Fly With Hope

Behind the Mask

2012-01-24T15:02:00.000-06:00

A few nights ago, after a rough day, I asked George to pass me my Nikon N5100. I asked him to look at me for a test shot. He had no time to pose or to think. He was tired. Here is the shot.

Then I told him to take group of photos of me with the same framing as the test shot. I did not pose for the photo, but looked into the lens just as I was.

Then, I did what every person with chronic illness does. I put on a mask. I re-did my pony tail. I put my glasses on, I stood up straight and I smiled. Here is the shot.

I know I still look don't look 100% with the puffy eyes, but the change is significant from the first shot of me even though they were a minute apart. Out of the several photos, he took, I asked George to pick the photo of me that he felt he sees the majority of the time. He picked the one of me above this one...without the glasses. In the second photo, you see my mask.

Yes, those of us with chronic illnesses put masks on all the time. We are pros. I put one on for my wedding day because I wanted to enjoy my day and not talk about how bad I felt the whole time even though I had cried in the bridal suite just before entering my reception. I think sometimes we don't even realize we have put on a mask because often that mask is for our protection.

I realized that I have unintentionally had a mask for a couple months online with everyone I keep in touch with online including my chronically ill friends (which is rare) as exemplified when I candidly discussed My Journey With OCD . In general, I have a lot of challenges with my illnesses and I share those; I also choose to focus on the joys in my life. I feel my Facebook statuses and blog posts reflect both. But, I don't tell the absolute nasty truth every day to every person.

There are so many reasons why, but the first one is that generally people don't and can't handle the truth. I learned to measure what someone really means whey they say "how are you?" because often times it is a question they don't want the real answer to. There have been times when I've shared my reality nad I've seen people pull away.

I am not sorry you cannot handle to hear about my life. I have no choice.

Second, when I do share how much I am suffering, people think it is an opportunity to share with me what they think I should do about it. I think I speak on behalf of everyone who has chronic illness that in this specific scenario, we hate this and find it incredibly hurtful. When a chronically ill--let me say that again slowly chron-i-cal-ly ill person shares about their suffering, what they need is encouragement/love/support, not an "idea" you heard about somewhere. As Ecclesiastes in the Bible says there is a time for everything; when someone reveals how deeply they are suffering, that point is NOT the time to be the umpteenth person to say "Have you tried/heard about XYZ?"

Daniel Hurley, MD wrote a phenomenal book called Facing Pain, Finding Hope: A Physician Examines Pain, Faith And the Healing Stories of Jesus. He wrote,

Even as we acknowledge the power of positive thinking and the presence of true grace, our human spirit can endure only so much before it is beaten down from its long-suffering.

This excerpt explains why lately, I have had a mask on to most everyone in my life except for George. I am beaten down. I am fragile and quite vulnerable: my body's betrayal & abuse, my situation, my jail cell, the nature of my illnesses. I am in survival mode. "Kelly Protection Mode." Lately almost daily, I ask God if today might be the day he would free me from this body and every time He says "No, I have plans for you." With His grace, I respond with "Okay. I trust you. I am listening." (Please note: I am not suicidal. I love my life. I'm just really weary. And I know God understands and can handle my weariness.)

Did you see George? Did you see his face? When I look at his face, it breaks my heart.

Beaten down. Long suffering. Need love. Need encouragement.

Mask back up. For my protection...

"Project Migraine Hope" Takes Flight

2012-01-20T09:41:00.001-06:00

Announcing the launch of Project Migraine Hope's website!!!

Calling ALL individuals (Migraineurs, Family Members, Friends, Co-workers) who have been affected by Migraine disease, please come and share your story at Project Migraine Hope!

Stories will start being posted on Monday, January 23rd!

Let's create awareness together and let's share hope!

I Have a Dream... "Project Migraine Hope"

2012-01-16T06:00:00.000-06:00

Happy Martin Luther King Jr. Day! Today I want to honor Dr. King by sharing with you all about my own dream. I am nervous to step with faith as the only person I've shared this with is George. But I feel so passionate about it and so excited that the I can only thing I can do is dive in. Are you ready? Let's go!

I have been brainstorming ideas with you all on how to get more signers for the Alliance for Headache Disorders Advocacy petition to urge Congressional hearings on the impact of Migraine and Headache disorders in my last two posts part one and part two. While brainstorming, I saw that other communities have done video projects to create awareness around a certain topic whether it be health topics, LBGT issues, bullying and the list goes on. You can see a 2010 article by Sarah Kessler: 5 YouTube Projects that are Making a Difference. I found watching these video projects very inspirational and motivational.

I have decided to start video project for Migraine disease that creates awareness by giving a face and a voice to Migraine disease and has a message of hope.

I am calling it "Project Migraine Hope"

Migraine is something that many people think of and dismiss as just a headache. But we know it is more than that. In many cases, such as mine, Migraines are chronic, debilitating and disabling. It creates a great burden on the individual and those around them.

So far, the numbers have been rising slower than we'd like on the AHDA petition. As I stated earlier, I would like Project Migraine Hope to be an avenue to give a face and a voice to those individuals who would be affected positively by a congressional hearing (the goal of the current petition) and every other future Headache/Migraine advocacy initiative. It is my hope that the personal nature of this project will bring compassion and greater awareness to this disease and those who suffer from it.

I am looking for individuals who have Migraines (chronic or episodic) and for loved ones/caregivers of those who have Migraines of all ages and backgrounds to share their stories with Migraine disease: the good, the bad and the ugly via a video submission. Often times, we put on a mask, but let's tell the world how it really is!

If you know me, you know I am about Hope. Therefore, I want this to be about hope as well: sharing our hope for positive outcomes in the area of funding for research and also reaching out to fellow sufferers in sharing what hope we hold onto when times get tough.

So many of us have been in a place with our Migraines where we have felt depressed, devastated and lost: when nothing is helping and you are lying alone in a dark room with excruciating symptoms; after another medication trial failed; when insurance did not cover a treatment; when the doctor said "I don't know what else to do" and/or "It is all in your head"...

We need to share with each other how we hold onto hope and to talk about what keeps us going amidst the struggle during dark times.

There IS hope for the area of more funding for Migraine research. And there IS hope for each individual Migraineur.

Are you with me? Do you desire to create awareness about how this Migraine disease has affected you or your loved one's life? Let's create a spirit of hope among the community with individuals sharing with each other: "There is hope."

Let's tell it like it really is. Let's dream with hope. Let's live with hope. Because there is hope.
Migraine hope.

What do you all think? Are you in? Do want to be a part of this? Let me know in the comment section your thoughts about this project.

As there might be some confusion because my personal blog has a tag-line that indicates I am a Christian. I want to make sure that everyone knows that Project Migraine Hope is non-denominational and persons of all groups, faiths and affiliations are encouraged to participate! Everyone's story is important!

In the next few days, I will be posting on guidelines of how to be a part of Project Migraine Hope, guide you through making/submitting your own video for contribution to Project Migraine Hope and will let you know when I will start accepting submissions!. I also intend on moving Project Migraine Hope to a new website. Stay tuned for that information.

OH! And by the way, if you have not yet looked at or signed the AHDA petition (which takes a minute), please do. Click here. And a reminder when you sign the petition: it is a legal document, so make sure you provide truthful information (i.e. no phony email addresses).

AHDA Petition Signing Brainstorm Part Two:

2012-01-12T17:26:00.000-06:00

It has been a cranky pants kind of day here in my house. My anxiety level is high, my OCD is knocking and I'm extremely depressed. It is not surprising given how difficult my life is right now. But, my husband shared with me something today that lived my spirits and I want to share it with all of you.

My Exciting Story:
As I mentioned in the update to my last post, George had handed out a few of the petition flyers to people who he works with that frequently ask about me. This week, he has continued to do so. What really touched me was when he gave the flyer to his boss. George's boss was shocked that there is so little research being done for Migraines and Headache Disorders. He told George that his mom had Migraines and would frequently hole away in a dark room for days.

His boss entered his office today to hand the flyer back to George thinking it was George's only copy and told George he had signed it. (This brings tears to my eyes.) Again, he said, "With how many people have Migraines, you would think that there would be more research." When George said that he had plenty copies of the flyers, his boss said that he wanted to keep his flyer so he could pass it on to someone else. (*tears*).

Maybe you are thinking: This won't work in my situation. It cannot help to ask! Go to your boss and ask them or just go to your co-worker friends individually. Maybe bring it up while you are discussing your health or if someone asks you how you are or if they can help you.

Petition Link: HERE
AHDA Flyer Link: HERE

While brainstorming about raising awareness for this petition, I have come up with an idea that I plan on announcing it Monday HERE, so please keep your eyes peeled. I am extremely excited about it.

Let's keep this going! Let's keep brainstorming!

Some Great Things I've Seen Happening:

Michelle at HealingYew is going to be putting the petition in the first edition of her January newsletter, New Yew News
Allison from Allison in Migraineland told me that she had made a flyer on her own initiative that she's been putting up all over the area and attached to the bottom the petition address that people could tear off as a reminder.
A few people have mentioned that they have asked their Migraine/headache specialists if they would post they flyer. One woman said she took the initiative to fax it to her specialist's office adn they told her they needed to get it approved by legal first. So it is worth the ask!
People are not letting awareness of the petition die on their Blogs, Facebook or Twitter. It is alive and well and I see people make comments on their FB posts saying "I signed." Yes!!

Let's stay positive! Let's stay motivated! As of this moment, we are at signer number 4301!! Could you or your family member or friend or colleague bring us to 4400...5000...10,000...15,000, our goal of 20,000 and beyond? It may seem like a big number, but it is attainable. 37 million Migraineurs and their loved ones. We've got this one.

We all have a reach. Let's use our arms to reach out to those around us! We are responsible for this. Let's make it happen!

Got some more ideas? Something crazy or something simple? Doing something to promote this petition? Please let me know in the comment section! I love to hear what people are doing.

AHDA Petition Signing Brainstorm

2012-01-07T13:55:00.000-06:00

So many Migraine advocates are banging our heads (OUCH!) about how to keep the numbers rising of people signing the Alliance for Headache Disorders Advocacy petition to urge congressional hearings on the impact of migraine and headache disorders. We currently have 3695 signers and need 20,000 by March 27th as that is when the petition will be brought to congressmen at the annual Headache on the Hill event.

I'm looking to brainstorm more ways of what I can do to raise awareness about and motivation to sign the petition in the Migraine community and outside the Migraine Community.

What I've done:

Posted all over Facebook the link to the petition, so many times that I'm sure my "friends" want to whack me with a virtual noodle Family members have re-shared it on their FB pages; not so much luck with non-Migraine "friends."
Shared on Twitter (my handle is @flywithhope)
Written blog posts about the petition
Shared blogs on FB of others who have more knowledge than I do about the petition an its development such as this one, Living With Migraines - Thoughts on a Sunday, from Teri Robert, who is a part of the Board of Directors executive committee of the AHDA,
Emailed family and friends that are not on FB or Twitter.
In late November I brought the petition into my headache specialist's office and shared it with him. (He was completely unaware of it.)

What I plan to do:

On the AHDA website, they have a link to a flyer (check it out!) they have made about the petition. My husband has expressed willingness to share it with concerned co-workers who are well aware of my disease, bring him Migraine related articles when they see them, and frequently ask him about me. George is an actuary (not in the health care field), so this could be applied to any workplace, given one has gotten permission from his/her boss first.
I plan on bringing the flyer to my headache specialist's office and to every doctor I go (that's a lot!) to and ask them if they would be willing to post it. (My headache specialist has fliers for other things such as the Rewrite Your Day Campaign, so it is worth it to ask.)
Continue talking about it on social media and my blog.

UPDATE- My husband passed out the flyer to a few people at work on Saturday (he's in his busy season) and they reacted very positively to it. I'm really excited that this could be a new avenue for people to take action as our caregivers/spouses/loved ones and those who are friends with them know this could impact them in a positive way.

What are your ideas about how to keep getting the word out to those who may not have heard it yet, have not signed it yet, or do understood why we need this petition signed? Have you signed it yourself? If not, that is a great place to start. It takes two minutes. Click HERE to read the petition.

I look forward to hearing from you: if you have signed it, what you've done to promote awareness for the petition, what you're struggling with and your ideas for what you are going to do to keep getting the word out.

Please see AHDA Petition Signing Brainstorm Part 2 for a follow-up of what people are doing!

What Does it Mean...to be a Warrior?

2012-01-04T18:55:00.001-06:00

That is the question I am asking myself right now. I grew up knowing that my name meant "warrior" because my parents had framed calligraphy of all our family names and what they meant hanging on the wall of our family home. If you do a search on meaning of Kelly, you will find "war, strife, bright-headed". I was bright headed as a child.

Thankfully, that precious little girl has no idea what is ahead of her.

I do not feel like a warrior at all right now. I feel weak and scared and defeated and overwhelmed.

Thankfully the definition of a warrior according to Merriam-Webster is broadly put, "a person engaged in some struggle or conflict." I say thankfully because 'warrior' seems like such a strong word, but only because we attach that meaning to it. A person engaged in the struggle must be endlessly strong. Right? Wrong. However in reality, warriors get tired and overwhelmed. Though I do believe if someone is in engaged in a struggle or conflict, they must have some inner strength (or be relying on the strength of another) if they are still fighting. But, warriors need rest and rejuvenation.

So, my dear readers, whatever conflict or struggle you are engaged in, know that you are a warrior. We can be weak, stressed, broken, abused, overwhelmed, kicked down, and afraid. Chronic illness does not take a break in fighting, but we need to give ourselves permission to take a break to renew our minds,our bodies and our spirits even if it is simply in minutes of resting our minds in a cozy chair with a warm cup of tea or perhaps a bit more like settling in with an inspirational book, for me: the Bible or a whole weekend devoted to rest. And then we must make sure to stand back up again emotionally, spiritually and physically. (Can you tell this pep talk is for myself?)

Look in the mirror and know you are a warrior. And do not forget to look around. You are not alone.

Chronically Missing Out & Chronically Living

2012-01-01T16:08:00.000-06:00

As the Rewrite Your Day campaign for chronic Migraine awareness demonstrates, people with Chronic Migraine sadly miss many events that are important to them because of this illness: big events and little moments. The first of several winners in the Rewrite Your Day Campaign had a Migraine that disrupted her whole wedding day. Her prize was to have celebrity event planner, Mindy Weiss, plan a ceremony where the winner and her husband had a vow renewal "wedding" ceremony of their dreams. Click here to see a bit of video of the occasion.

The holiday season of Thanksgiving through the New Year, brings many events big and small that Migraineurs and those with other chronic illnesses miss out on and probably wish they could rewrite. As the December 2011 Headache and Migraine Disease Blog Carnival demonstrated, we work hard to decrease triggers to prevent these situations. But inevitably, we will most likely face an event that we will miss out on or weigh heavily on whether or not we should push ourselves to attend only to regret it later.

George and I went to Kentucky for the Christmas holiday this year for ten days to be with my family. We almost did not make the trip because my health was so poor, but George muscled through packing our Honda Civic Hybrid to the brim, carrying myself and the three dogs into the car and driving the 5 1/2 hours (yes I do believe he was going pretty fast) to get there.

Making allergen-free cookies with my dad.

I had many wonderful moments of being with family: making cookies, doing a puzzle, talking with my sister-in-law, watching movies, going out to eat for the first time in months(!!!) and being present for Christmas morning's gift exchange. A dear friend from Cincinnati who had a miracle baby in September came to visit and ran to me once George had opened the door as we hadn't seen each other in almost five years. So many precious moments.

I also missed out on a lot, but I'll only mention the big things: spending the extremely special times with my family of Christmas Eve, Christmas Eve dinner and the second half of Christmas Day, spending time with good high school friends I had not seen in a while and meeting their children.

As I laid in my bed all Christmas Eve day, and during special Christmas Eve dinner, I could hear my family's voices echo through the house. I could picture what I was missing in my head: the food, the lively conversation, the smells. I only go to my parents' for Christmas-time every other year so it is a big deal for me to miss such meaningful times.

I allowed myself to be sad, to cry, and to be disappointed. Not being able to spend time with my family; friends during important times is something to feel grief about and to vent about. But, after crying and saying a few choice words directed to my body and to God, I made a decision not to feel sorry for myself and to limit my pity party. After the pity party, I decided that I needed to focus on taking care of myself. I made the choice by telling myself that this is just one day--an important day, but in the long run, I have other days I can make just as important.

My conditions are chronic, so unless I am some day miraculously cured of everything, I am not going to avoid having bad days health-wise on days that are significant to me, like Christmas Eve or a friends' wedding or an important get-together. Finding acceptance with this has helped me to go through disappointments with less stress and even a bit of peace. I have constant pain, chronic Migraines and several chronic illnesses that incapacitate me, yet I still have choices, even if sometimes it is only a choice of how I view my situation. But that is a big choice.

My brother, sister-in-law, myself, & George (not pictured my parents and uncle) at a restaurant!

And then on days, parts of days, hours or a handful of minutes where I am able to participate, I make an effort to make them as meaningful as possible.

Random Notes: MRF, Petition, and Wego Health Judges Panel

2011-12-28T15:24:00.001-06:00

Migraine Research Foundation:

Thanks to the generosity of an anonymous donor, all new donations made to the Migraine Research Foundation this last week of the year, December 26-31st, will be matched dollar-for-dollar! That means your gift of any amount will double its value to Migraine Research Foundation! $10 will become $20; $50 will become $100. Every dollar counts

Your donation strengthens our mission to invest in critical new research -- the only way to prevent migraine, develop effective treatments, and cure it! With your help, we can continue our fight to end the debilitating pain of migraine and help the 1 in 4 American families affected by this disease.

Since all of their costs are underwritten, 100% of your donation goes to fund research and support sufferers!

Urge Congressional Hearings on the Impact of Migraine and Headache Disorders

I want to remind you of the Alliance for Headache Disorders Action Alert I shared about in a November post. This petition is a real petition that Migraine and Headache Disorder Health Activists will be taking to the AHDA's annual Headache on the Hill event in Washington DC in March! The first step to getting funding for research is to get awareness which is what this petition is for: getting a congressional hearing on the impact of Migraine and headache disorders on the individual but also the country. It takes two minutes to sign this petition and can make a huge difference. Please take a moment to read it, be horrified at the statistics, sign it, and pass it on to your friends/family. If we do not stand up for ourselves, then we have NO right to complain.

Announcing the Wego Health Activist Awards Judges

I'm really excited to share that I have been selected to be a judge for the Wego Health Activist Awards. As a reminder, you can keep nominating for the ten different awards up until December 31st! This year I have found my passion to be more involved in the health activism side of my disease and pleased to get to read and learn from the health activists that were nominated.

Health Activist Awards from Wego Health

2011-12-23T13:46:00.003-06:00

I wanted to send out a reminder for those of you have not heard or for those haven't had a chance to participate yet.

The online health community and WEGOHealth are be celebrating all the awesome achievements made in healthleadership and patient advocacy in 2011! WEGO Health,a different kind of socialmedia company dedicated to empowering Health Activists, has just launched thefirst-ever Health Activist Awards program, to recognize Health Activists (bothnew and established) for all of their great work over the course of theyear.

This interactive program lets everyone get involved by nominating theirfavorite Health Activists and sharing what has inspired them, moved them, andmade a difference in the online health community. I have nominated some of myfavorite Health Activists and I hope you’ll take some time to recognize yourfavorites too. Anyone can make a nomination!

You can check out WEGO Health’s Health Activist Awards 2011 homepage for details on the 10 different awards and to find out what Health Activistswill win if they’re chosen.

Nominations will close December 31, 2011 and winners will be selected inearly 2012 - so get your nominations in now and celebrate the Health Activiststhat have made the biggest difference to you in 2011.

December 2011 Headache and Migraine Disease Blog Carnival

2011-12-12T07:00:00.000-06:00

Welcome to the December 2011 Headache andMigraine Disease Blog Carnival

The Headache & Migraine Disease Blog Carnival hasbeen created to provide both headache patients and people who blog aboutheadaches with opportunities to share ideas on topics of particular interestand importance to us.

The theme of the December carnival is "Reducing Holiday-Related Migraine Triggers: Share yourbest advice, tips & tricks for minimizing triggers while still fullyenjoying the holiday season." Please keep reading for thesubmissions on this topic.

Nancy Bonk shared December 2011 Headache and Migraine Blog Carnival posted at Migraine and Other Headache Disorders. In her post, Nancy shares her plan on how she will beavoiding holiday triggers this year including something new she’s trying thatis helping her to be more self aware and take care of herself better. Read her post to find out more about her new approach to self-care regarding triggers.

Diana Lee sharedMigainuers: Have Happier Holidays with Routines posted at Somebody Heal Me. Her post has many great tips on how to minimize triggers through keeping to normal routines. I found it particularly helpful when Diana challenged readers to consider the topic of expectations where among other things she encourages readers to respect their limits even during the holidays. Click on her post to discover other thoughtfulideas to keep in mind for minimizing triggers and having a happier holiday.

Migrainistashared Planning For a Holiday Plan posted at Migrainista. In her post,Migrainista discusses a commitment she has made to herself on how she is goingto approach the holidays. Check out her post to find out about her vow toherself.

Teri Robertshared “Bah humbug” to Holiday Migraine Triggers posted at Putting our HeadsTogether. In addition to listing a variety of resources, Teri discusses the needto be proactive in having a plan for the Migraines that will inevitably be triggered during the holidays. I imagine the title of her postwill draw you in as it did me.

JamieValendy shared Reducing Holiday-Related Migraine Triggers posted at Chronic Migraine Warrior. In her post, Jamie discusses a list of triggers we cancontrol and a list of triggers we cannot control. She shares tips on how to approachand manage each one. I found it intriguing that one of the tips she listed under our control is stress and thought her tips on this topic quite helpful to keep in mind.

Rebecka shared Getting organised: My migraine kitposted at teenmigraineur. Rebecka, a first time and very welcome contributor tothe carnival discusses her preparation for an exchange trip to France forthe holidays and what she will be including in her migraine kit she will be bringing with her. My favorite off herlist of what to bring was “a cute face washer towel with a picture of tweety bird and a lamb onit” as she plans on using it to wrap an ice pack and to cheer herself when she’snot feeling well. Find out what else Rebecka plans on bringing as a part of hermigraine kit.

Thank you for all your submissions and ongoing support of the carnival!

Submit your blog post to the January 2012 edition ofthe Headache & Migraine Disease Blog Carnival by sending your submissionsto Diana Lee by email. (Unfortunately some of us have had problems with thesubmission form on the blogcarnival.com site from time to time, so I suggestyou just avoid it. I apologize in advance for any inconvenience.)

The theme will be: "What do you resolveto do in 2012 to manage your migraine disease?"
Submissions are due by midnight (the end of the day)on Friday, January 6, 2012. The Januarycarnival will be published by Diana Lee at Somebody Heal Me on Monday, January9, 2012.

Dear Fellow Bloggers: Will you Consider Disabling your CAPTCHA?

2011-12-11T13:52:00.002-06:00

I have participated in Patients For a Moment Blog Carnival, which Sharon Wachsler has hosted twice in the last few months, first at her blog After Gadget and most recently at her blog Bed, Body & Beyond. When she calls for submissions, she asks that bloggers disable their CAPTCHA: the little word you must spell before some is allowed to comment. Sharon shares that this CAPTCHA is a huge hindrance with those with multiple disabilities. Often there is a handicap/auditory button, but if you try to listen to that, most of us cannot decipher them.

Sharon wrote a great post on this on this called Waspish Wednesday: Dear Fellow Bloggers About Captcha, that I will refer to you for more information on why CAPTCHA is so important to disable your CAPTCHA. I will also refer you to a recent post she wrote, Waspish Wednesday: New Wrinkle in CAPTCHA Problem.

I participated in both PFAM's that she hosted without knowing that I had CAPTCHA on my blog as I do not have to fill it out when I comment on my own blog. I am using Blogger's new format and found that I am completely unable to take it off in the new format. I had to switch back to the old format to disable it and then switch back to the new format and it worked! I still am able to moderate comments, but those with disabilities are also now able to access my blog & comments without hindrance.

To disable CAPTCHA with Blogger, switch back to Old Blogger by going to the "Blogger Options" cog icon underneath your photo on the right side of the page. A drop down menu will appear when you click on it. Click on "Old Blog Interface." Once in the Old Blog Interface, go to "Settings" Tab then under that go to the "Comments" Tab. Scroll down to "Show word verification for comments?" Select "No." Save settings. Go to top of page where it says "Try the updated Blogger interface" and you are set.

Please consider disabling your CAPTCHA if at all possible!

Last Call: December 2011 Headache & Migraine Blog Carnival

2011-12-08T12:59:00.001-06:00

Please don't forget tomorrow is the deadline for submissions to the December 2011 Headache & Migraine Disease Blog Carnival. Our theme for December is "Reducing Holiday-Related Migraine Triggers: Share your best advice, tips & tricks for minimizing triggers while still fully enjoying the holiday season." As always, posts on any topic related to migraine disease or other headache disorders are also welcome.

Entries are due by midnight (the end of the day) tomorrow, Friday, December 9th, and the carnival will be postedhere at Fly with Hope on Monday, December 12.. Please email all your submissions to Diana Lee (somebodyhealme AT dianalee DOT net).

Please note: Unfortunately some of us have had problems with the submission form on the blogcarnival.com site from time to time, so I suggest you just avoid it. I apologize in advance for any inconvenience.

I look forward to reading your entries!

Trigger Point Acupuncture for Fibromyalgia

2011-12-06T16:05:00.001-06:00

Late July, my fibromyalgia flared really horridly. When it gets to the back of the right side of my head and goes down the right side of my neck and into my shoulder, I am doomed. I medicated myself with muscle relaxers, NSAIDs and Norco to no avail for a week before I called my Migraine/headache specialist who also treats Fibromylagia. I asked for a medication and a non-medication treatment. He recommended TPA (Trigger Point Acupuncture).

First TPA treatment July 2011

I had had one prior experience with Chinese acupuncture and it was not a good, and quite painful one, so I was dreading this visit with the Nurse Practitioner for TPA. Since my Norco was not even touching the severe pain, I did not expect little needles to do anything. But lo and behold, those little needles were my miracle. I saw some relief immediately. I could not believe it. My pain had moved from severe to moderate after ten minutes of treatment! It took a few weekly treatments, but eventually I was pain-free in the area shown in the picture above. The rest of my body was another story..

After a quick search, I could not find any good references for TPA and Fibromyalgia, but I found an excellent website that explains myofascial (myo=muscle; fascial=skin covering muscle) pain which can coexist with Fibromyalgia. After reading about myofacscial pain, I believe that is what is happening in the right side of my head, neck and shoulder.

To understand TPA, you must understand that Fibromyalgia has trigger points and tender points. According to Dr. Ian Pardoe who wrote the content for the aforementioned website,

Trigger points are “nervous hot spots” which cause muscles to become abnormally sensitive. This nervous excitability results in the development of tight bands of muscle or fascia that, when pressed, cause local pain, as well as referred pain to somewhere else in the body. Trigger points are essentially nervous excitability in a muscle.

This also explains why massage makes my Fibro pain much worse. A Fibromyalgia flare started Monday with pain in many of my joints including my hips, knees, ankles along with what I'm self-diagnosising as myofacial pain in the right suboccipital region of my head, down the right side of my neck and shoulder.

A phone call to my NP yesterday morning got me a 1pm TPA appointment. I also get TPA for my Migraines/CDH as shown in the photo below. I usually get TPA along with cold laser therapy every three weeks.

This photo was taken in August 2011; Last week, I had 20 needles and most were in my right temple.

Usually when the needles are put in, I do not feel them at all. I was sitting in this photo above because I also had some needles inserted in the back which you can see. Usually with TPA for Migraine I lay down and often feel like falling asleep.

12/6/11; Needles went up the right side of my head.

However, yesterday my body was not happy at all during my session. Apparently all the nervous excitability in my muscle was more than I could take. I stuck out the ten minutes so that my muscle would relax as my NP had explained it to me. But I think Dr. Pardoe explains it better:

12/6/11 Total 26 needles

"Acupuncture causes an immediate relaxation of the muscle because of the effect of the “micro-trauma” to the surface of the muscle being treated. This relaxation will then reduce a degree of the muscle spasm and consequently allow further stretching of the affected muscle group."

Thankfully I was prescribed some prednisone which seemed to help the last few times I've had fibro flares and will help the pain in the rest of my body.

Sunday night, I slept horridly because of this Fibro flare. Last night after the Trigger Point Acupuncture, I slept like a baby.

When I woke up this morning, I felt no pain. I did my Gentle Tai Chi and stretching like I do on a daily basis expecting to feel some pain. My right ankle was bothering me a bit. I took a short walk around the backyard because it was way too cold and windy to be out there without a coat on. And I was cheering inside because another TPA miracle had occured.

Mid-morning, I sat on my couch with my back support cushion behind me and with my computer on my lap began to check my emails. As I was sorting through, I noticed a twinge of pain shoot up my shoulder to my head. If you scroll back to the very first photo, it shows the line that my pain followed. I ignored the moderate pain for five minutes thinking, "oh this is expected." Then, the pain suddenly screamed up the pain scale like a speeding bullet and hit a 9.5/10.

With the exception of right after the surgery I had in March, I almost never say 10. Ten is reserved for the absolute worst, which is why I think it is ridiculous that people say on a scale of 1-10 my pain is a 12 or 100. Those numbers are not on the scale between 1-10! How can you realistically rate your pain on a daily basis if you don't use your high number (in this case 10) as the highest. I digress.

So, I stood up because obviously my posture and use of my right arm was bothering me and stupidly went to massage the area in my head. Immediate ten. It was scary. Ten is terrifying. Couldn't speak. I had already dialed George. Still couldn't speak. He waited. He knows if I don't speak it is because I am not well.

I stood for half an hour before the pain came down to a 9/10. After medicating myself, using a ThermaCare heating pad, sitting on the floor with my back support and mainly using my left hand (I'm right handed.) my pain throughout the day has stayed between 8-9/10. You can imagine my frustration. I am hopeful that sleep tonight will be as healing as it was last night. And that tomorrow I will wake up and avoid-as much as possible-the movements that created today's mess.

Needless to say, I cannot wait until my next TPA session next week.

Writing for my Spirit

2011-12-01T18:03:00.001-06:00

Sharon at Bed, Body and Beyond is hosting Patients For A Moment carnival this round which will be up on her site on Wednesday, December 7th. Sharon had many questions, but her main question was "Why do you write?"

I have always been verbal and got a minor in English at Purdue in addition to my minor in Spanish and Major in speech language pathology for no other reason than I loved to read and to write. Throughout graduate school, I had files on my computer of non-fiction books-in-progress that I wrote for fun.

I have kept a journal consistently since I was in junior high in 1991. I believe there are almost twenty in my closet. And years before I had met my husband, I started a journal in which I wrote to him (and gave it to him on the eve of our wedding). Though I had to get it out and asked to read it to him months later as he had set it aside, not appreciating it as much as I had taken joy in writing it.

Oddly the times when I didn't write were the times when I became sick with Chronic Migraine and NPDH in 2005 and for a period thereafter. It was almost as though writing for myself had become too painful. I still wish I had a document of how I felt during those times. I am particularly sad that those initial years 2005-2006 of my chronic illness was when I stopped writing because that is when I was engaged and had gotten married. I wish I could read back on how I felt at the time about being a sick newlywed. I remember it, but it is different when you go back and read your own voice. It is like a home-movie of the soul.

I do not know if I would be blogging if I were not chronically ill, but I know I would be writing--writing what I know as Louisa May Alcott's character, Jo, finally learned by the end of Little Women. Whether it be about speech language pathology or raising children or in a journal for myself, I would have continued to write.

I was introduced to the blogging world through the Migraine community. I quickly wanted to be a part of it. I concluded my second blog post on June 13, 2008, entitled "Gift of Pain" named after a book I had written of the same title by saying

Dr. Brand and his coauthor, Phillip Yancey wrote in The Gift of Pain, "Gratitude is the single response most nourishing to health." The reality of how the pain has affected and changed my life is sometimes difficult to swallow. But, I feel challenged to continue to find how to be thankful through and despite my pain.

One of the many reasons I write this blog is because I want to challenge myself and others to think of life with chronic illness in a different way, as Dr. Brand challenged me to think of life, pain and gratitude in a different way. I write because I want others to know that they are not alone and they do not need to be afraid to speak out about what they are going through or how they feel about it. Silence breeds shame.

Writing is a therapeutic process where my feelings spill out. Using these keys, I work through my vents, my fears and my challenges. The resulting tune may sound like a symphony or an angry dissonance of notes. Either way, it feels better out than in.

The heart and soul of why I write is because it is something that illuminates my spirit and brings me great joy. If no one ever read what I have to say, I would still write.

Announcing December 2011 Headache & Migraine Blog Carnival: Call For Submissions

2011-11-29T16:54:00.001-06:00

The theme of the December 2011 Headache & Migraine Disease Blog Carnival carnival will be ""Reducing Holiday-Related Migraine Triggers: Share your best advice, tips & tricks for minimizing triggers while still fully enjoying the holiday season." As always, posts on any topic related to migraine disease or other headache disorders are also welcome.

Submissions are due by midnight (the end of the day) on Friday, December 9. The December carnival will be published right here at Fly with Hope on Monday, December 12.

Please note: Unfortunately some of us have had problems with the submission form on the blogcarnival.com site from time to time, so I suggest you just avoid it. Apologies in advance for any inconvenience.
Please email all your submissions to Diana Lee (somebodyhealme AT dianalee DOT net).

For more information about the carnival visit the overview page here: Migraine Blog Carnival. Please spread the word to any migraine or headache, pain or chronic illness bloggers you know and consider posting an announcement on your own blog if you have one.

My Journey with OCD

2011-11-29T11:30:00.000-06:00

I have been having unique symptoms for years, but George and I always attributed the symptoms to something else-something related to my chronic illnesses. They went as quickly as they came and we did not think twice. However, gradually, for a couple months now, the symptoms have become so intense that I have struggled to function even on days that I have tolerable head pain.

On November 10th, 2011, I went to the psychiatrist, Dr. K, that I have seen for almost eight years for anxiety and depression. I told him in detail what was happening half expecting to be committed and half expecting him to increase my medication and send me on my way. But neither happened.

I was told I have Obsessive Compulsive Disorder.

Dear readers, I am so glad to finally get this post together so I might share with you what has been happening in my life. As you'll read I've been so drained that doing anything is an effort. I am hoping that sharing this intense struggle in my life will encourage you to feel comfortable to share your struggles as well. So many people think that they must "hide" from their friends and loved ones parts of who they really are. But, how can we truly feel loved if we are not known? I'm not suggesting everyone speak on a public platform like this, but telling one person in one's life a part of who one is can be freeing.

I am not ashamed of my OCD. I am certainly overwhelmed by it and do not wish to have OCD attacks in front of people because it is such a vulnerable place to be, but I'm not ashamed. I am not ashamed of my OCD because it is a disorder where my brain has malfunctioned just as I am not ashamed of my chronic Migraines where my brain does not work properly. From the moment I got this diagnosis, it has not changed how I thought of myself. In fact it was a relief to have an explanation for what has been happening. OCD is just another part of my journey.

What causes OCD?
Per Jefferey Schwartz, M.D, UCLA researcher and author of the book, Brain Lock: Free Yourself from Obsessive Compulsive Behavior, OCD is thought to be an imbalance of the biochemicals in the brain and a "locking" of four parts of the brain: the occipital cortex ("the error detection system"), the caudate nucleus ("the automatic transmission and filtering station for the front part of the brain that controls thought"), the thalamus ("the central relay station for processing the body's sensory information) and the cigulate gyrus ("It's wired into your gut and heart-control centers").

Basically according to Dr. Schwartz, "The brain starts sending false messages that the person cannot readily recognize as false." In short, my OCD brain lies to me. It is hard to tell the difference between a real message and a false one. For example, a person with OCD may be holding the prongs of the cord of an unplugged curling iron in their hand and still be getting a message from their brain that the curling iron is not yet unplugged.

What is OCD and how does it affect me?

***Please note that the following may be distressing to read.***

OCD is an anxiety disorder, not a personality trait. It can manifest it self in many ways: obsessions about dirt/contamination, need for order/symmetry, repetitive rituals (think Jack Nicholson in the movie "As Good As it Gets"), hoarding, nonsensical doubts, religious obsessions and obsessions with aggressive content.

Dr. Jeffrey Schwartz, author of Brain Lock describes obsessions and compulsions well. I'll be using his definitions to share about my OCD (bold, italics and color are mine):

Obsessions are intrusive, unwelcome, distressing thoughts and mental images. The word obsession comes from the Latin word meaning 'to besiege.' And an obsessive thought is just that - a thought that besieges you and annoys the hell out of you. You pray for it to go away but it won't, at least not for long or in any controllable way. These thoughts always create distress and anxiety. Unlike other unpleasant thoughts, they do not fade away, but keep intruding into your mind over and over against your will. These thoughts are, in fact, repugnant to you."

My obsessions and compulsions fall into the category of "aggressive content" and more specifically self-harm. I am decidedly NOT suicidal, yet for months, have urges to do things that would result in self- harm or death. To reassure my readers, Dr. K, my psychiatrist said, that if I were suicidal, I would have already killed myself a long time ago. Scroll back up and read the "Obsessions" definition again. Remember: these thoughts are intrusive, unwelcome, distressing and keep intruding over and over against my will. Against my will. I am not suicidal. I have OCD. Dr. Schwartz wrote:

People with OCD may even fear they are going crazy--they know that their behavior is not normal. Indeed, the behavior is apt to be foreign to their personalities or self-image.

My obsessions (intrusive, distressing, intruding against my will over and over) surround thoughts of hurting myself: jumping from high places (off of tables, over balconies), biting myself, hitting myself in the head with an object, seeing myself hanging in the hallway by a dog collar, choking myself with an electrical cord, stabbing myself with silverware and the list of unwelcome thoughts and mental images goes on.

As you can imagine, these obsessions create a huge amount of anxiety in me as they are unwanted and assaultive to my spirit. I see myself dead and hanging in the hallway on an almost daily basis. That in itself is extremely traumatic.

Compulsions are behaviors that people with OCD perform in vain attempt to exorcise the fears and anxieties caused by their obsessions. Although a person with OCD usually recognizes that the urge is ridiculous and senseless, the feeling is so strong that the untrained mind becomes overwhelmed and the person with OCD gives in and performs the compulsive behavior. Unfortunately, performing the absurd behavior tends to set off a vicious cycle. It may bring momentary relief, but as more compulsive behaviors are performed, the obsessive thoughts and feelings become stronger, more demanding, and more tenacious."

Intrusive thoughts (compulsions) come into my head and by trying my best to ignore them, I have panic attacks and high levels of anxiety that lasts for hours. The OCD makes me think that if I follow through on a compulsion (which is my obsession) I will feel better. So, I do and that starts a horrid cycle of continuing to do self-harm.

My obsessions turn to compulsions when I attempt to follow the false message being sent by my brain. My compulsive behaviors are to do the actions that my OCD is telling me. I have jumped off tables, put my leg over the balcony, bitten my arms so badly that bite marks and bruises lasted for weeks, hit my head with any object I can get my hands on, and used a spoon to make stabbing actions at my chest.

The week before Thanksgiving, I ran screaming into the bedroom slamming the doors because I saw myself-dead- (I call her the woman) hanging from a hook with a dog leash in the hallway. I saw the woman come down off the hook and come after me with a dog leash trying to get me to hang myself. Thus the screaming and frantic attempts to keep myself safe. I see this woman often. (Refer to "Obsessions" definition: intrusive, unwelcome, distressing thoughts and mental images intruding over and over against my will.)

When I shared this with my brother, he asked, "Do you really see the woman, or do just you think you see her?" And my answer was "Both". My brain is sending a false message that there really is a woman trying to get me to hang myself standing in front of me. So, my brain is telling me that I really see her just like I see George or my brother. On the other hand, in reality, she is not there, so from someone else's point of view, I just think I see her.

I know this all sounds wild and crazy, but I'm not crazy, my brain is simply locked/stuck and it is my job through therapy to attempt to unlock it.

How do I treat my OCD?
Through using the bio-behavioral therapy techniques-four step treatment program in Brain Lock, I am learning how to start to manage my OCD. This four step treatment program has been proven in research studies to enable people with OCD to change their brain chemistry. According to Dr. Schwartz, OCD is a chronic condition that will not go away, but through therapy it can be managed at some level. Often people with OCD are treated with SSRI medications. As my body and SSRI's are not compatible, I am unable to take medication to find relief.

How am I doing?
I am exhausted mentally and physically. I often find myself unable to remember things or find a day has gone by and I have not accomplished anything because I find it extremely difficult to think. My anxiety level is quite high even with medication. I find myself coping with panic attacks throughout the day as I am resisting the urge to do my compulsions. I scream so much I get hoarse a lot.

Since my OCD became daily and more severe, life has been extremely difficult to navigate. I can be triggered by anything and at anytime. My parents were here for three hours a couple weeks ago and I was triggered by the silverware on the table. I am triggered by discussing my OCD. I am most vulnerable at the end of the day, when my other chronic illnesses have taken a toll on me. Thanksgiving day was a trial as it was at George's aunt and uncle's house-nine hours from home- with seventeen people. I used my dog Zoe, who I trained as a therapy dog last year, to be my own personal therapy dog. I spent five days over the Thanksgiving weekend with my in-laws but spent most of it in my room, in bed, trying to cope with my OCD. Unfortunately I missed out on spending a lot of time with my loved ones.

I am only at the beginning of my biobehavioral therapy treatment process, so as time goes on I will be able to use my learned techniques to change the severity of my issues. Already we have seen baby steps of progress. Though last night, when trying to confront one of my fears, I actually passed out from fear. I thought that only happened in the movies with silly old women calling for smelling salts. Unfortunately I was holding my 8 year old dog, Mr. Knightley at the time but as George was with me, neither of us got hurt.

What can you do to help?
My brother made me feel quite loved when he asked, "How can I help when you are going through this?"
*If you are physically with me when I have an attack, the best thing is to allow me to do what I need to do to get through it using my therapy techniques. It is probably best not to try to engage me, but continue with the activity you were doing.
*If you are not someone that is physically in my life often or ever, being understanding that my energy is lower than normal is important to me.
*I'm fine talking about my OCD. Its not a taboo thing. If you have questions, please ask. I really appreciate my family members who have asked me straightforward questions. I am an open book. OCD is more common than once thought.
*Do not feel sorry for me. My life is full of joy. This is just another part of my journey.

If you made it to the end here, I am extremely thankful you stuck it out! Hugs to you!

Stand Up: AHDA Action Alert

2011-11-22T17:08:00.001-06:00

The Alliance for Headache Disorders Advocacy has sent out an urgent action alert. If you are reading this, please take the minute it takes to sign your name to a petition that will be going to congress.

The goal of the petition is to help end the federal neglect of chronic disabling headache disorders.

The action alert email reads:

Help end the federal neglect of chronic disabling headache disorders

Migraine and other chronic headache disorders cause tremendous suffering, disability, and economic costs in the US. Federal research funding agencies, such as the NIH, have neglected this burden partly because Members of Congress, with oversight of these agencies, are unaware of the huge scope of the problem.

A US congressional hearing has never been devoted to headache disorders. We seek to remedy this and educate your Members of Congress. But we need your help.

Right now, we ask you to please sign an on-line petition urging congressional hearings to be held on the impact of headache disorders. It takes only a minute to sign and we will deliver the signed petition to Congress.

Also, please forward this email to everyone and anyone that cares about someone suffering with a disabling headache disorder. Please ask them to sign too, and then pass the email further onwards.

Together, we can ensure that our lawmakers in Washington, DC appreciate the urgent need to reduce the huge burden of migraine and headache disorders.

Thank you very much, and happy Thanksgiving.

The Alliance for Headache Disorders Advocacy
*end email*

There are over 37 million Migraine warriors. Let's stand up for ourselves! If we don't, who will?!?!?!

And for those of you who are loved ones, friends or chronically ill yourself, please stand up for us!

Please click on THIS LINK right now

If you got the email alert, be aware that the links on the email did not work. I have corrected them below.

Blog it. Email it. Facebook it. Twitter it. Stand up for it.

Coping With a New Diagnosis: PFAM Carnival

2011-11-20T15:48:00.001-06:00

FibroDaze is hosting PFAM carnival that will be up on November 23rd and her prompt is: "when you have made some sort of peace and are coping with the chronic illnesses you do have and “life” throws you curve balls in the form of a new diagnosis, how do you deal? What are your coping mechanisms? How do you come to terms with the new diagnosis?"

This prompt is very pertinent for what I am dealing with currently. This year has been a year of curve balls. I was diagnosed with yet another disabling chronic illness, Meniere's disease in January 2011, which ended up in surgery on my head in March. It was devastating to have this disease, but more so because it sealed that my husband and I will not be able to become parents.

It has taken me all year to come to peace with my life as it is, even before I was diagnosed with Meniere's. And not just a peace, but a joy in the nooks and crannies of what my life is. I have found spaces where I have purpose: writing & photography. I am NOT my diseases/conditions even though they disable me and dictate what I can do in my life.

So, this November 10th (less than two weeks ago) when I was diagnosed unexpectedly with yet another chronic and currently quite disabling condition, I felt I had been thrown a huge curve ball. Although this diagnosis is chronic life-changing and life-challenging, it has not depressed me in the way that my Meniere's diagnosis did.

How do I cope?
*I learn about my diagnosis.
            -Knowledge is power. The more I know the truths of what my diagnosis actually is I can feel
             more confident in what I am facing. I am also able to discuss it with more confidence with
             those who have many questions. And I am able to find hope in possible treatments. I find
             this information by asking my doctor for reliable books and reliable internet sites.

*I reach out to those closest to me: those who I know I can break down in front of and feel safe and validated.
               -A new diagnosis can be quite overwhelming. and so I find that in the beginning when a
                diagnosis is fresh, I keep the group I share it with small. Taking care of myself is priority
                number one. As I feel more comfortable and knowledgeable, I share it with more people.

*I give myself the space to process what it means to have this new diagnosis and also space to grieve that things have changed.
              -I process by writing in my journal, by talking with God, by talking with George, by talking
               with my counselor. I find outlets to express my feelings.

*I delve into something that gives me joy, giving me a break from the grief.
             -As I love the art of taking photographs, I submerse myself in that. I also love to cook;
              although this is not something I am able to do often, when I can, I do because the
              creativity of altering recipes and creating something delicious holds my attention
              for a while.

How do I come to terms with a new diagnosis?
*Coming to terms is an active and passive act. It takes time.

*I come to terms with a new diagnosis by making sure that I do not let my emotions overwhelm me to a point that I am not able to move forward with my life.

*Living with chronic illnesses means living WITH them...not despite them. Learning how to live with a new diagnosis is critical in being able to move forward.

*Lately I have found my self writing "I have __________." The more I write it and say it out loud, the more real it becomes and the less devastating it is to write/say.

Chronic illness often makes us look into the face of a life of adversity and choose to find joy and life and love. When faced with another diagnosis, this is incredibly important to remember. We need to give ourselves the time and the grace to grieve what we have lost. And then we need to move forward and discover what life can be like with this new challenge.

As for my currently new and raw diagnosis, it is quite challenging for me right now to even think. I am quite verbal person, but as part of this new diagnosis and also my emotional reaction to it, I find myself unable to think, shutting down and often times withdrawing. I know at some point, whether the symptoms are better controlled or not, I will find a way to live with a fullness that I had before this diagnosis and all of the prior diagnoses.

Until then, I will give myself the grace to walk through this part of the journey how I need to as I know from previous experience, the rawness of it all will at some point fade away and I will find a new normal.

Dum Geit!

2011-11-15T17:07:00.001-06:00

I am struggling very profoundly because on Thursday I received another diagnosis completely unrelated to Migraine disease or Meniere's disease or Fibromyalgia or IBS that is very distressing to me in many ways. It is not terminal, but is chronic and currently has a vice grip on my life. As I am able, I will share more.

Since my diagnosis, I am have been having a difficult time coming out of my shell and talking with those I love, responding to emails and writing on my blog. So this post is one of many efforts of throwing myself out there and gaining some confidence back again.

I am coping by watching old movies. If you're a frequent Fly With Hope'r, you know I love old movies from the 1930's and 40's. They are like old friends to me. Last night, I re-watched part of of one of my favorites, 1948's I Remember Mama with Irene Dunn that had originally been a play. I want to share with you one of my favorite scenes.

To set it up, the very dominant head of a Norwegian immigrant family, Uncle Chris, has paid for his nephew, Arne, to get a critical surgery so that he can walk without physical difficultly. He is the only visitor allowed.

Uncle Chris?
Yes, Arne?
Does it have to hurt like this?
If you want it to be well and not walk always like Uncle Chris,it does, for little.
(Arne moans.)

Is very bad?
It is, kind of.
Arne?Don't you know any swear words?
What?
Don't you know any swear words?

No, Uncle Chris. Not real ones.
Well, then I tell you two fine ones you use when pain comes again.

I tell you Norwegian swear word.Is better.
When pain comes again,you say "dum geit."It help plenty.
I know. I have pain too.I say it all the time.
And if pain is very bad, you say "dum geit!"(yelling)
Just like that. Dum geit! But only if is very bad.

(As Uncle Chris sings Arne to sleep, Arne randomly yells "dum geit")
- It help, huh?- Is good!Then you sleep some.

(A nurse had been listening in and speaks to Uncle Chris.)
That's terrible. Teaching a child to swear.

You don't knowwhat "dum geit" means, eh?
Do I look like a foreigner?
If you were, you would knowthat "dum geit" in Norwegian means:"Stupid old goat."

Sometimes we just need to yell, to feel better--whatever we are yelling about we need to get it out. So many people keep their emotions inside until they come out in a self or other-destructive manner. We can't lock feelings away forever.

So, if you have cranky pants on, are upset about your illness, have had a bad day or have been diagnosed with something else like me, yell. Not a yell-er? Try it! Perhaps it will help you feel better, perhaps it won't. Maybe it won't change anything, but I know it sometimes makes me temporarily feel better. And it is one way that helps me release pent up emotions.

Be sure not to yell at any humans or animals. We wouldn't want our emotions to come out in an unmerited fashion at someone/thing we love. Perhaps get an object and yell at it, or yell at God (he can take it) or just yell in an empty room to get it out. And if you're surrounded by people, grab the nearest pillow and yell into that.

Today I'm yelling because I don't want to deal with another illness. Will you yell with me? What do you need to yell about/get out today?

Dum Geit!

Birthday: Number 32

2011-11-08T17:36:00.000-06:00

Yesterday was my birthday. I woke up in a major funk. My husband came into the bedroom softly singing "Happy Birthday" so as not to bother my head. I was depressed, anxious, in pain, and did not want it to be my birthday.
We have a tradition where George brings birthday hats, puts them on the dogs, himself and me and we sing songs in bed. Knightley loves the "Happy Birthday" song.

George had gone to get the hats, and when he returned, he said, "You've gotta see this." I followed him into another room expecting to see our "HAPPYBIRTHDAY" sign hanging up. But, he pointed out the front window and I started crying happy tears.

Someone had tied three happy birthday balloons to our mailbox and there was a present and a card inside the mailbox.This photo was taken at around 7am, so this person was very sneaky. :)

I was in such a crummy funk, but having a friend show that she cared this much by going out of her way to surprise me on my birthday? Well, there aren't words for how special it made me feel.

My Migraine was tolerable enough that I was able to cook, which I love to do but usually do not feel well enough to do.

I am very proud of these blanched tomatoes. It was my first attempt at blanching tomatoes for my first ever home-made tomato soup. I also made home-made gluten free soft pretzels and gluten-free yeast rolls. Over this last year of having to cook from scratch, I have found joy in cooking, but lately have not been able to very often. So, when I can cook, it is happy day for me and exactly what I wanted to do on my birthday!

Since I've been chronically ill, birthdays have been difficult for me and it stings even more when people say "I hope you have a pain-free day." Ugh. I haven't been pain-free in six years. Can they wish me something else? Like joy? Now that is something I can actually do something about. I can choose to have a joyful birthday even if I feel crummy.

George brought home a gluten free bakery cake which was so sweet that I could not even finish half a piece.

IWe got out three board games that I have been wanting to play. We got through two games of INGENIOUS but stopped when I was too tired to play anymore (or maybe it was because George had won both games!) I love Turner Classic Movie channel and we cuddled on the couch while watching a movie I had never seen, "Roberta" with Irene Dunn, Ginger Rogers & Fred Astaire. I fell asleep about ten minutes into the movie. George fell asleep too. We both woke up--still wearing our party hats! :)

It was a joy filled day.

Thank you.

Five Things That Changed my life

2011-11-05T21:07:00.000-05:00

Today's prompt: In regards to being a patient/health activist: What are 5 things that have changed your life? Were they events? People? Succinct moments or things that progressed over time? Feel free to write a few things that changed your life for the better or for the worst or whatever you think “changing your life” means.

*Connecting with other Migraineurs online via MyMigraineConnection, Facebook and blogs.
-This changed my life because I finally found people who validated my experience. They saw me, understood me and supported me unconditionally. And they still keep me afloat, daily.

*Reading A Third Space For Migraine Patients
-This article challenged me to find a third space: something that I am passionate about where I push through the pain in order to find peace inside. I found that focusing on my love of photography has helped me to get away from thinking about my chronic illnesses. Just this morning, I got all bundled up to go outside because the rising sun was casting a beautiful light that I could not resist. I used to think that the only time I could get a break from my Migraine would be in sleep. But now, I am transported through the lens of my Nikon 5100 to a world of joy.

*Learning to listen to what I think of me and not what others think of me.
-This changed my life as I used to be a people pleaser. I did not want anyone to have a reason to say a bad word about me. I was very concerned about what others thought of me. This has changed dramatically as I have had countless episodes in public that in the past I would have found incredibly embarrassing. I know myself and I had to learn to trust that what I know my truth. Other people can create ideas in their mind about me: positive or negative, but that does not change who I am. Once I embraced this truth, I stopped being a victim to others opinions and became strong in trusting myself.

*Learning I had responsibility and a say in my treatment.
-Pre-chronic illness, I was very naive about the medical world. That combined with what I hadn't learned in that I was chronically worried what others thought about me was a mine-field when it came dealing with doctors. Learning that my health care is my responsibility and that I need to be the head of my health care team changed how I approach doctors. I used to let the doctor tell me what he was going to do and then would leave confused. I was too scared to ask questions. Now. I don't let the doctor leave until he has finished answering questions and explaining what I don't understand.

* Being accused of being a drug-seeker
-There are very few chronic pain patients who have gone into the ER who have not been accused of being a drug-seeker. So many people abuse the system that the the person who is not a drug-seeker is the exception rather than the rule. The second time I had been admitted to the ER four months into my chronic Migraines (and very uneducated about them-mind you), I had been guided by a concerned family member who was a RN to ask for a certain narcotic because I was in so much pain. My naive innocent 26 year old self was mortified when the ER doctor stormed out of the room and slammed the door. He called my neurologist who confirmed my condition and was much kinder and helpful when he returned.

But from that moment on, I realized that I had to approach doctors (and even pharmacists) in a different way). I have been in the ER many times (often not for Migraine, but since I come in with a Migraine they want to treat it). How I have dealt with ER doctors in the past is to say, "Please do not give me narcotics because that will only mask the pain. Toradol (an NSAID) has always helped me the most in the past." And I never get a raised eyebrow.

After my surgery in March, I had been told by my surgeon, after a phone call to him one night, to go to the ER immediately for stronger pain medication than he could prescribe over the phone. Even though my head had obviously been operated on, I knew I had to be proactive because I was going in and asking for strong narcotics. I explained to the ER doctor my situation and said, "I'd love it if you'd talk to my surgeon. His name is Dr. W and I have his number." The older doctor with a kind face smiled and gently said "That won't be necessary." And he gave me exactly what I needed.

I recently had a situation where my doctor had prescribed a narcotic but since I had filled it had told me to use it differently. When I called my pharmacy for a refill, the pharmacist refused to fill the prescription and told me "You've obviously taken more than prescribed." With his information, I had. He was very angry even though I explained the situation to him. Finally I said, "I would really love it if you would talk to my doctor." The moment I said that, he seemed to calm down. My doctor office got it straightened out. But you can bet that it stung to have someone tell me I had abused a medication when I absolutely did not. It felt very cruel to have somone not beleive a word I said because so many other people have lied. I am paying for someone else's sins. The bottom line is that I learned that since there are people out there who do abuse medications, people like me have to be extra patient, understanding of the doctor/pharmacist's perspective and be proactive when it comes to these situations.

-This post was written as a part of National Health Blog Posting Month -30 health posts in 30 days.

Coping with the Funk

2011-11-04T21:04:00.000-05:00

Aviva at Sick Momma is hosting PFAM this round which will be live on Nov 9th.

So what do you do to get yourself out of the doldrums when you fall into a funk?

*I dance. Dancing=joy for me. If my Migraine is too bad, I don't actually get up and boogie, but I remember dances that bring me joy. And when I'm able, I will stand up and dance around by myself. This morning, I was quite overwhelmed and depressed. I was seated in bed talking to George; he took my hands in a dance pose, started rocking back and forth and sang the song we had done a choreographed dance to at our wedding. He did this because he knows it will make me smile. I've even danced with the dogs (with their eyes bugging out).

*I watch movies depending on my mood. My grandfather worked in the film industry, so movies of every genre and decade were part of my education. I find black and white movies from the 1920's-40's the most comforting (i.e "My Man Godfrey," "The Thin Man" series or "I Remember Mama"). Sometimes my mood calls for an upbeat lift-your-spirits-in-song movie like "Enchanted" or "Mama Mia". Other times, the dork in me is my comfort when I watch "Star Trek: The Next Generation". But, my fail-safe is the television series, "The Golden Girls". You cannot go wrong with Betty White.

*As my three dogs, Knightley, Zoe and Giselle are my constant companions, I usually turn to them when I'm in a funk. There is nothing like having a ten pound furry creature nestle herself into your chest when you need a hug.

*Daily, I read devotionals from different perspectives: a catholic pastor that suffered from depression, Bread for the Journey by Henri Nouwen; a diverse group of chronically ill Christians with different illnesses, Mosaic Moments: Devotionals for the Chronically Ill by Lisa Copen; and a woman who became a quadriplegic at the age of seventeen after a diving accident, More Precious Than Silver by Joni Eareckson Tada. I find if I go a day without connecting to God through reading these, I sink deeper into my funk.

*Ironically the November 4th devotional from More Precious than Silver is entitled "Had Enough?" She quotes a verse from the bible where Elijah says "I've had enough Lord...take my life." (1 Kings 19:4) Ms. Tada went on:

The record shows that the Angel of the Lord agreed that "the journey is too much for you" (1 Kings 19:7) Then God presented Elijah with a new work to do. Sometimes switching focus onto others is just what the doctor would order.

What she described is exactly what helps me when I'm in a funk: focusing on others. I often find that going to forums such as MyMigraineConnection, ChronicBabe and Rest Ministries Sunroom help me to connect with those who are going through troubles that I understand and may even be able to offer some support and hope. It is very uplifting to know that I can help someone else and it reminds me that I do have worth.

How do you keep on keeping on when your pain is high and your fatigue is even higher?

*'One moment at a time' is a very frequently used term in our community, but it is very true. Sometimes, I have to pull on an invisible rope to get me to the next second. And then I do the same for the following second. Practically speaking, I keep on going by setting up and keeping to a routine as much as I can. Evenings are the hardest for me because by the end of the day, I have used up my ability to cope with the day. But, if I have a routine that I follow, evenings are easier to get through.

What (or who) inspires you and gives you hope?

Paul, a man who wrote many books of the new testament in the Bible, inspires me. He inspires me because he went through so much pain and hardship yet he kept on going. He said "..in Asia. We had great burdens there that were beyond our own strength. We even gave up the hope of living." (2 Corinthians 1:8b) Wow. I certainly can identify with Paul here. Later he writes "So we do not give up. Our physical body is becoming older and weaker, but our spirit inside us is made new every day." (2 Corinthians 4:16)

Sometimes the funk seems so big that I can't see to the other side. I am going to take a note from Paul here and not give up.

-This post was written as a part of NHBPM- 30 health posts in 30 days http://info.wegohealth.com/NHBPM

Dear 18 Year Old Kelly,

2011-11-03T14:10:00.000-05:00

I know at 18 you would love to get a letter from your almost 32 year old self and see a bit of the blueprint of the next 14 years. You are so anxious to fly through college and to marry the boy you are dating. Time seems to be your enemy.

Celebrating my 18th Birthday at Purdue

Mom always says "The joy is in the journey." Yes, her mom-ism has grown on me. Try not to wish the time you have away. Things change so slowly that you don't notice it. And sometimes they change so fast that all of the sudden what you think you have is gone. Kinda like how Grandpa just passed away? Remember how you were walking in his house among all his things, expecting to hear his voice and feel his presence in the room, but he really wasn't there? It had all changed so quickly.

All you really have is today. If are you absorbed with what tomorrow may be like (i.e marriage), you will miss what is right in front of you. Appreciate what you have. I'll let you figure out what that is.

Your future husband told me to tell you to be patient. *smile* He should know about that; he waited a while for you.

Keep being driven and determined as those qualities will serve you well on the road ahead.

In reading your journal writings, I see how much you want to deepen your relationship with God. I see that you are seeking His will and purpose in your life. Keep praying and reading and asking questions.

You have a great sense of discernment. Trust your gut. It is your most treasured guide on your journey. When you sense something is "off" in a situation, follow that sense. And please listen to your body.

Kelly, you push yourself so hard. I know you feel pressure to live up to expectations of being the best person you can be. But it is okay to take care of yourself. Somehow you have translated these expectations into expectations of perfection. It is okay to make mistakes, to veer off course, to fail, and to disappoint those you love. Mistakes are a part of life. Attempting to be perfect will only lead you to depression and anxiety.

Finally, you are enough just as you are. You do not need to try to be a superwoman. Just be you. And when you are yourself, you will be more content and more ready for what God has in store for you.

Love you,
Kelly

P.S. Keep Dancing!


Ballroom Dancing Competion	1998

-This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Candle of Hope

2011-11-02T07:59:00.000-05:00

Some days, hope is hard to find, much less hold onto.

Research has not caught up with me yet Migraine-wise. With my Migraine disease treatment, we are going down a route that my specialist uses as a last resort. We're also tweaking other treatmetns that aren't really working, but are better than nothing.

Most of this year, my mantra has been: "I'm not going to be concerned about tomorrow because we'll figure it out then. There are no tomorrows. Only todays." Now, when I have frequent episodes where I am not finding relief, I find myself quite concerned. I need to have hope that tomorrow is going to be better.

It is not so simple to just "have hope/faith." People have said "have faith it will be okay." And I have lived through it not being okay so many times. And after so many times of seeing things not work out, it starts to wear on you.

A pastor of Mars Hill Bible Church, Rob Bell, once shared a story about a person who told him they were hopeless and he told that person, "I will hold onto hope for you until you can hold onto it yourself."

I have used this phrase with my friends and they have used it with me. "I will hold onto hope for you." Because the truth is that some days, no matter what people say, hope seems to slip through my fingers.

Recently, the hope that I'm going to find any type of treatment that will make my life more tolerable and more functional (i.e. do housework/cook meals) feels dim.

In conversing with those of you who comment on my blogs, I came up with the idea of buying a candle that says "hope" on it. What I got is actually a tea-light candle holder (no scent!). I light a candle every day and it is a great visual for me. My parents just gave me a Willow Tree figurine called "Angel of Freedom" for my upcoming birthday. It is an angel holding up a butterfly and I have placed it next to the candle.

This candle reminds me that there is hope for my future. It also reminds me that someone is holding onto it for me when I cannot.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J I rebelled and did not use today's prompt.

NHBPM- Potential Titles of My Future Book

2011-11-01T14:14:00.000-05:00

It is National Health Blog Post Month and I'm taking the challenge!

Today's prompt: Titles of my future book. Say you’re writing a book about your life, community, condition, or Health Activism. Come up with 5 working titles and a quick book jacket synopsis. I'm changing it up a bit and writing 5 titles and a synopsis for each potential book.

In reality, I really want to write and publish a book. It is a dream of mine that I desperately want to fulfill. Here are a few random ideas off the top of my head that I just thought of today.

-"Choosing Life" This would be a book about choices we make every day that can help or hinder how we live well with chronic illnesses.

-"Fly with Hope" Well this is a no-brainer title since I use it for my blog. It is a title that is very personal to me so it would have to be about my life and faith. It would be about how I have fought with God, wrestle through my faith and the teachings of the bible, and how I got to a place of choosing a relationship with God despite the unanswered questions and anger.

-"Migraine Free" This would have to be a book about Migraine disease itself...not another book about the ins and outs of what it is. But, a book on why more research, activism and involvement is crucial to those of us who have Migraine disease. There is no cure, so none of us with the disease are ever "free" from it, but we can never stop fighting individually and collectively. This book would contain stories of Migraineurs at different levels of being affected by the disease.

-"Chronic Illness Meet the Internet" When I was headed off to college, an email address was something everyone was just starting to have. I never experienced an adult world without email or the internet. Wouldn't it be interesting to interview those who have had chronic illnesses before and after the internet age and see the pros and cons of how the internet has helped/hindered the lives of those with chronic illness.

I cannot think of a fifth right now. Looking forward to reading other people's ideas!

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

2190 Days of Headache; 2201 Days of Sweetness

2011-10-26T05:00:00.000-05:00

Six years ago today, my life changed. My life had also changed six years and eleven days ago.

As of today, I have had a constant headache for two-thousand one hundred and ninety days. Diagnosis of New Daily Persistent Headache means I can remember the date my headache started. I remember October 26, 2005. It also was the date of my first Migraine attack which turned into Chronic Migraine as I had a constant daily Migraine. As I described in a previous post, Scariest Migraine Attack Ever: What I Didn't Know, the mishandling of treatment and diagnosis of that first Migraine attack was a nail in my neurological coffin.

Yep, six years ago was a changing day in my life, but six years and eleven days ago was even better!

Saturday, October 15, 2005, George proposed and I said yes. It happened to be "Sweetest Day" a silly Hallmark holiday in this part of the country that I don't recognize or understand. But that day was pretty sweet!

Saturday morning, George picked me up at my apartment and we went to our favorite breakfast place for brunch. We must've been really glowing because the waitress commented on how obviously in love we were. Little did she know, we would remember what she said because it was ironic that it would be on the day George proposed.

I had helped George pick out my engagement ring a couple weeks before though I walked away when he paid for it so I would not know when it would be ready after it had been sized or when he'd propose. My engagement ring is a ring with three diamonds and detailing on the side that has special significance to us. "You, me and Jesus." When we're going through an exceptionally difficult time (which is often), George picks up my left hand, pointing to each diamond he says, "you, me and Jesus are going to get through this." Jesus being the one that is holding us together.

After brunch we went for a walk because it was a beautiful day with the leaves changing colors down a path that was special to us. We passed up the wooden bench under a willow tree where he'd first kissed me and where I had always thought he'd propose. But we kept walking and walking and the sidewalk was covered with goose droppings. George made a game out of it and we jumped around the goose poop laughing. And then we came to the end of the trail in a clearing where he stopped me with a squeeze of the hand and got down on one knee.

Remembering that moment, I can see in my mind how beautiful a day it was with blue skies and rustling trees of different shades, the sun was truly shining and I remember him picking me up and spinning me around in happiness. Of course we had to come back through the goose poop as it was the only way. We danced through it, back to my apartment where we told Knightley and called my parents and George's. My head was in the clouds and it stayed there for eleven days.

Engaged

Then the goose poop hit the fan. But George did not leave. He could have. and I remember when I was trying on wedding dresses with my mom, she told the store attendant that "most men would've left." My mom and dad were by my side on the two hospital stays before our wedding in July of 2006 and she saw George lovingly care for and tend to me.

We have had to walk through a lot of goose poop together, and even though today makes me remember the day all this started, I am choosing to focus on and be thankful for the fact that George has been by my side the whole time.

Sanctuary

2011-10-25T16:28:00.001-05:00

Most of you know that I'm home bound. I have driven a car three times this year. I have been home bound so long that I have gotten way past what people call "cabin fever." My house is now my sanctuary. Not as in Merriam-Webster's first definition of sanctuary: "a consecrated place" but more like the second definition: "a place of refuge and protection." My house and backyard are a refuge from my diseases.

It seems strange that the place I am essentially bound to because of disease would also be a place where I find refuge. It has not always been this way. I used to think there might as well be bars on the windows and doors as this house has at times felt like a jail. But, over the years I have learned that I have to work at finding a way to live with joy. And changing my home into a sanctuary has been part of that work.

A wood framed rocking chair with vinyl cushions covered with cloth used to belong to my paternal grandparents and now sits in the room that was going to be a nursery but now is referred to as the "sitting room". Surprisingly, the cushions are comfortable, the rocking is comforting and there are enough dog beds to go around for the dogs that do not fit on my lap.

George, myself and our three dogs live in a bi-level home, but when my Migraine is severe or I'm having a Meniere's attack, it is impossible for me to make it safely down the stairs. Last November, we completely remodeled our lower-level living area because we were in the process of starting a family through adoption. It was not until this June that the beautiful space stopped being a storage area and became another calming living area.

We even bought a Beta fish at the recommendation of my counselor/therapist and I must say that watching "little blue" swim around his tank is soothing to the soul.

We have two blue Adirondack chairs on our deck to remind me of our time at the beach house in the Outer Banks. We also have a shaded cushioned bench swing in our yard.

Last night George and I discussed rearranging furniture upstairs so I could have yet another upstairs place that is not facing a television to be, to cuddle with the dogs, to read and to write.

This is my sanctuary. Except my bedroom.

Last week, I was bed bound. Being bed bound is the worst. When I am bed bound, my Migraine is so severe that I cannot get vertical (i.e. sit up in bed) without feeling a trillion times worse. If I could get vertical, I'd be out on the couch because I hate my bedroom with a passion. Walking the ten feet from the bed to the bathroom is a form of torture. My bedroom becomes a jail cell of sky blue walls and dark navy black-out curtains and an item not included in most cells, a brain-sucker: a Samsung flatscreen television, which with the exception of a couple shows is a necessary evil.

I have spent so much time in my bedroom over the last six years that it has become traumatizing for me to be in it. After periods of being bed bound, I often sleep on the couch in the living room. As each day of the last six years has ticked by, my hatred of the bedroom has grown so that if I do not have a set evening routine, I get a full-blown anxiety attack in my attempts to simply walk down the hallway and go to bed.

Over the course of time, in brainstorming ways to change-up the look of our bedroom, George and I have re-arranged furniture, bought a bigger bed, changed the pictures on the walls, changed the color of the black-out curtains, and switched sides of the bed that we sleep on. After five and a half years of blue sky walls, I would love to feel well enough to paint them a new color.

My six year anniversary of chronic Migraine disease and constant headache (New Daily Persistant Headache) is tomorrow and most of those six years were spent watching mindless tv because I could do nothing else. When I could knit, I did. When I can write, I do. When I can photograph, I try. When I can read, I will. But, when I am bed bound I usually cannot do any of these. I desperately hope the hours will pass quickly with each tv show I watch. I am an early riser these days, and the middle of last week I broke down into tears when the clock read "9:07am" because I had thought it was closer to 11:00am. Time stretches during Migraine attacks and for this reason, I try to avoid looking at the clock.

I have not yet gotten to finding sanctuary in my bedroom, and never may. So far, the only sanctuary I have found in my bedroom is within myself. I have found refuge in my inner sanctuary where I am with God and he is with me.

very few words

2011-10-23T12:40:00.002-05:00

there really are very few words to say when it is this bad: when the Migraine lasting for days and days is constantly the most severe it could be on a pain and disability scale and there is no relief to be had or in sight.

The Force (of gravity) Was Strong With Me

2011-10-17T17:48:00.000-05:00

Yesterday, Sunday, I went on my first non-medical related outing since we got home from our vacation last month. Our outing, our couples small group, was wonderful even though I stayed too long: longer than my body said I should. My head pain was incredible, but it was SO worth it as I will discuss in another post.

By the time we had gotten home, which took all of two minutes, I was ready to lay on the couch and calm my body down. As George guided me up the stairs of our bi-level home, I was not experiencing vertigo. I was strong enough to walk by myself and hold myself up, but needed his arm for reassurance.


Photo from 2009 remodel

We walked into the bathroom and as I started to sit on the toilet (yes TMI, but it is part of the story!), I somehow slipped (our toilet seat had a wardrobe malfunction) and the momentum I had landed me face first in the bathtub that is parallel to the commode and only inches apart. I instinctively put my arms out to brace my fall. And with the way I had fallen, I had pulled the shower curtain, heavy metal hooks and rod down on top of me. The force of the falling rod hit the back of my head straight on. Yes, gravity pulled that silver bar in just the right direction: down.

George watched it all but too far away to do anything. His Jedi skills had abandoned him at the moment. (We will not tell Master Yoda about this.) These days he has a tight grip on me when I'm feeling off kilter because I have slipped out of his hands and hit my head on the floor a few times from Meniere's attacks or simply passing out. Actually, more than once a week, I pass out or have a drop attack. After so many falls, we have come up with a system of prevention. Though, we had not yet discussed what to do in case the toilet seat decides it wants to come off the base while I try to sit on it. Go figure.

It happened so quickly that I do not remember falling. I only remember being face down in the tub underneath a pile of curtains and a rod that had used the temporal and occipital part of my skull for target practice. I cried as I was stunned: first that I had fallen and second that I had been hit in the back of my head.

In those few seconds I knew I had a choice. I already had quite intense head pain from our outing and a was Migraine brewing. Crying is a huge trigger for me for headaches and Migraines. I do not usually stifle crying, but this was a time when crying would not make me feel better physically or emotionally and it actually would make me feel worse.

I took several deep breaths trying to slow my breathing and stopped crying. I was stuck because my left arm from my shoulder to my elbow is useless as fibromyalgia is causing it to scream if I use it. So I hung over the side of the tub until George regained his Jedi powers and helped me to the bed. Once I was laying flat with an ice pack the back of my head, I looked up a him and started laughing. That kind of uncontrollable giggle you get when something really "tickles" you (as they say down in Kentucky).

I did not know why I was laughing other than it was my body's way of coping. I'm pretty darn worn out physically and emotionally right now. Other than asking George what had happened, the thing I kept saying (while laughing, mind you) was "Really!?" "Really?!" "I just got hit on the head by a shower curtain?! Couldn't it have hit *anything* else!?" It wasn't a sarcastic laugh, but a laugh from my gut. George was staring at me. Maybe he was using Jedi mind tricks to make me laugh instead of cry? Hopefully he wasn't thinking "my wife has finally lost it!" :)

I told George "I feel like I've been beamed in the back of the head with a baseball bat. He picked up the shower rod and said, "You have."

I am thankful the fall was not worse. I am thankful George was nearby to help me and that this had not happened when I was alone. I am thankful I had the presence of mind not to get worked up.

And I really am thankful for those things, but I don't feel thankful. I feel like I want to punch something and simultaneously I want to sob until I feel better.

And those things are options, but instead, I am putting one foot in front of the other, which is proverbial because I'm not actually able to get out of bed today. And I'm hoping somewhere a researcher who cares about Migraine disease is also putting one foot in front of the other and working on a brilliant something-or-other that will one day benefit myself and the millions of people like me.

"Look at the new thing I am going to do. It is already happening. Don't you see it? I will make a road in the desert and rivers in the dry land." Isaiah 43:19

Migraine Research Foundation

Click the above link to find out more about the MRF and what you can do to help.

We Few Are Fighters

2011-10-13T18:07:00.001-05:00

I have so many things I want to write about, but I am blocked and not because I have "writer's block". I am blocked because I feel I need to be writing more positive posts. But I cannot.

An estimated 10% of the 32 million Americans that have Migraine disease suffer from Chronic Migraine. Chronic Migraine basically boils down to that sufferers have fifteen or more Migraine days a month. I found this information in articles by Teri Robert: Chronic Migraine - The Basics and Rewrite Your Day for a Chance to Relive a Day Lost to Chronic Migraine.

I have seen a stat somewhere of the percent that I fit into. The tiny percent of those of us with intractable Migraine that is also refractory. The percent of us that no matter how many trials, how many medications, how many medication combinations, we do not respond to treatment. We have constant pain and daily Migraines. We rarely mention them until they are so severe we are at our breaking point.

In one of the support groups I am a part of, several of us are disabled by our Migraines. And by disabled, I mean absolutely laughable that you might suggest we could try to work. Disabled in that we would love to do things "average" people do like household chores, errands and sometimes drive a car.

We are a group where we have tried so many medications that we have run through the list. Some cannot take triptans, a group of medications that are designed to specifically abort the Migraine process. Those of us who can do not respond to them, or get marginal help. There are a variety of rescue medications used, and for the lucky ones, these medications mask the pain for a few hours. But, they don't take away the other symptoms of migraine. The ones that we can't really put into words. To George I call them my "neurological" symptoms...what makes Migraine different from my constant 24/7 headache.

We are a group individually grasping at straws, going from specialist to specialist as they throw up their hands saying "we don't know what to do." We are a group that cling tightly to each other and to our faith in God. We are a group that knows that there is not any more suggesting "Have you tried this?" The only thing we can do for each other is to support, encourage, pray, and love and the biggest one: understanding.

We are a group that often feels defeated. We want to have hope. We want to believe. We are strong and we are fighters, but when you are fighting a war and you lose most the battles coming home injured, you feel defeated.

But I look at this group of women and I think. Wow, they are the ones who are so strong.

Yesterday, I lost my temper.

2011-10-11T13:49:00.000-05:00

"Why?" you ask.

"George bought the wrong chicken stock," I reply.

I can count on one hand the number of dishes I have made in the last six to eight months. So, when I cook, I cook so that I can freeze the dish and eat it later. Over the weekend, George went to the grocery store which I am not currently able to do and have not been able to do since late Autumn 2010-almost a year. As usual, I gave him a detailed typed list and always write next to questionable items "check ingredients' because I have many food sensitivities and triggers.

Yesterday, I was excited I felt well enough to cook and so I made a huge batch of white chicken chili. When I picked up the empty box of chicken stock to throw it in the recycling bin, out of curiosity, I read the label and found that it was not organic and had ingredients I could not eat, thus making my dish uneatable. Two hours of spoons down the drain making a meal I could not eat.

Should I have looked at the label *before* I added it to the dish? Of course.

Did I? No.

Why not? Because I trusted George. He has always call me from the store when there was anything questionable on a food label before he bought it. George knows how important it is that I don't eat these ingredients and is the one person aside from myself that I trust when it comes to my food.

Who's fault was it that I now could not eat the chili? Completely mine. But that did not stop me from losing my temper.

With steam pouring out of my ears, I dialed George's work number. I can see my gentle husband pick up the phone, not having a clue that a train of ruthless words and anger was about to hit him.

I am ashamed at how I acted, how I yelled, how I cried, how I said some nasty things that I wish I could take back.

It took thirty minutes after I had hung up the phone for me to cool down, be convicted of how wrong I was in how I had treated my loving George and to call to apologize.

After much thought, I realized that the anger I had was not because George bought the wrong chicken stock. The anger I unleashed was anger surrounding emotions that have a hold of me. This little event triggered how upset I feel about my situation of being disabled, debilitated and needing to rely so heavily on others. It is difficult it is to face the reality that I am so reliant on George for so many things...help to the bathroom, support in the shower, walking back to bed, pulling me up off the floor when I have a Meniere's drop attack (which is frequent these days), shopping for groceries, doing household chores, driving me everywhere. The list is long. For a woman who by nature is independent and driven, a life of so much dependence and extreme limitations is a very cruel way to live.

My anger had nothing to do with chicken stock or George and everything to do with the disabling, debilitating nature of my chronic illnesses. And I'm sure as I was getting it all out, my anger about the daily severe pain I experience fueled the fire too.

I know I'm not alone in wrongly accosting someone with pain-driven anger because I have had others take out their anger on me. How often do we take our anger out on someone who did not deserve it? Someone who was just trying to help? Someone who loves us dearly? Someone who takes care of us when we cannot?

So many people bail when times get tough. Let's not hurt the ones that stick around.

Scariest Migraine Attack Ever: What I Didn't Know

2011-10-07T13:02:00.000-05:00

The theme for this month's Headache and Migraine Carnival is "Scary Migraine Episodes: What is the scariest migraine attack you've ever suffered or witnessed?"

The scariest Migraine attack I've ever suffered was my very first severe Migraine attack. As you will read, it is not the scariest because it was the worst one I have had, but because at the time I did not know what was happening to me or what to do about it.

I have had headaches most of my life. I have vivid memories of taking much more Advil than any teen should take in one day. I had chronic sinusitis (sinus headaches) as a late teen and young adult. Then I started having a chronic daily headache that was triggered by the high levels of mold that were in my workplace.

October 26, 2005 was field trip day for the self-contained special education class I was working in.
I was working as a speech language pathologist in an early education center for children with varying levels of disability. I usually rode the bus with the class on field trips, but that day I opted to drive myself since I was not feeling well. As we wandered through the pumpkin farm's activity area, I was a bit disconnected and not present most of the morning. By the time the children were loading on the bus to go back to the school late morning, I was feeling so ill I knew I needed to get home-and fast.

I remember the drive as if it were yesterday. I was so dizzy that I was having trouble concentrating on the road and certainly not feeling myself. On the thirty minute trip to my apartment, I was so scared that I called George, who I was newly engaged to, but got his voice mail.

Climbing the stairs to my second floor apartment felt like I was climbing a mountain. I barely made it over the threshold of my doorway when I sank to the ground. I crawled to the nearby bathroom and after I vomited, I lay face down on the olive green pile rug. And then the pain came with such a punch of intensity that I thought I was dying. I heard the phone ring, but I could not move. I couldn't make out the words, but I heard George's voice and remember thinking to myself that he was going to find me dead.

The next days and months were terrifying. I went to the immediate care center which led to the ER, which led to my PCP's office which led to being hospitalized for dehydration and severe headache (they were not calling it Migraine at the time), which led to a neurologist who did testing and gave me a diagnosis that was not Migraine. I was given so many meds that did not help and some that made us think I was going crazy-literarally. The anti-depressants I was put on for pain caused me to be suicidal. I was frequently attempting to jump over our house's balcony and saved only by George holding me down or friends he had called over to help him by sitting with us. One friend told me that at one point, I was referring to myself in the third person and talking as if I were satan saying I was going to kill "Kelly." It wasn't until I saw a psychiatrist that said "You are not crazy. It is the medication." I stopped the medication and the mental instability/suicidal issues stopped as well. Yes, I'd say that was traumatic and scary for all involved!

Looking back, what I have gone through in the years since then has been much worse and much more horrific. But this time in my life between October 2005 and February 2006 was scary because I did not know what was happening to me or what to do about it. I had no compass or reliable guidance. Everything I did led me navigating a path of confusion and pain.

After three months of seeing me, the neurologist I was seeing told George that he thought I was just depressed and it was all in my head. The nuerologist had me on Esgic Plus around the clock for months. I still have a script from him that says for quantity #100. What was he thinking? Of course any person with headache or Migraine tendencies would immediately be rebounding. And I was. I keep the script to remind me not to implicitly trust doctors, but to question and research and get multiple opinions.

Eventually on February 8, 2006, I had to leave work mid-day after a parent meeting. I went to the emergency room and my neurologist prescribed a VERY strong narcotic. The time between February 8th and February 17th (when I saw a headache specialist for the first time and was admitted to a hospital inpatient headache unit) was the scariest for George and for me. I laid in bed every day in agony. We did not know what to do. Like a good patient, I took medication as prescribed and of course as it was a narcotic, the relief wore off. As I was unfamiliar with narcotics, I did not understand why and so I suffered tremendously. After going to the ER multiple times and calling my neurologist multiple times, I was lost as to what to do.

Without sharing my opinion, I recently asked George what the scariest Migraine he's seen me go through was and he referred to that time in February 2006. Here is what he says about the time.

It was scary because it had been going so long and it had gotten so bad and we were at our wits end. Kelly was on percocet and trying so hard and I would come home from work and see this desperate constantly horrified look in her eyes because she was in constant pain. The ER couldn't do anything and neurologist didn't do anything and we didn't know what to do. It was horrible.

The doctors were not telling me what was wrong and the treatment I was given was not helping and probably making things worse. The neurologist never told me about Migraines. We certainly did not know about Migraine/headache specialists, Status Migraine or chronic daily headache or preventatives or abortives or rescue medications or rebound headache or IV treatment for Migraine and the list could go on and on!

It is hard to remember the mindset I had back then...to remember how it was and how scared we were because Migraine disease has since become a daily part of my life and I know so much about Migraine disease now. But remembering the terror we had keeps pushing me to keep reading, keep researching, keep questioning so that I keep myself educated and do not find myself in that situation again.

If you are looking for somewhere reliable to learn more about Migraine Disease, a couple of great places to start are Migraine.com and My Migraine Connection.

Vacation Handicap

2011-09-23T07:54:00.000-05:00

George and I took a much needed vacation for eleven days! George had an actuarial conference for a couple days near our destination so we expanded the rest of the time into a much needed get away. We were so thankful to get away to a place that we both love and enjoy so much.

And we had a blast. Every day was soaked with love and enjoyment. Every second, we countered the intense difficulty of this year with a determination to be swept away in the joy of a place we both love so dearly.

A few weeks before the trip, my Migraines and Fibromyalgia improved enough so that I could start working on increasing my stamina. I started walking on the treadmill five minutes a day on the slowest setting and after three weeks had worked up to twenty minutes a day, four days/week. After eight months of being bed bound and house bound, I thought, "Wow, I'm going to be okay for our trip!"

We knew we would have to bring my wheelchair as I was not up for the amount of walking required. But little did I know how much stamina I would need to simply sit in a wheelchair and be helped in and out. It is much more work than I expected. Every muscle ached...even my smile muscles. And unfortunately, the short two hour twenty minute airplane ride triggered my Meniere's. I was spinning all eleven days.

Photo property of KLW

My body was in shock and so exhausted that when George went to his conference after we'd been at our destination only 36 hours, I slept for two days, just about all day. We were staying in villas just outside our resort's main lodge, but I could barely get myself to the resort to mail postcards. And when I was unable to make the walk to any of the resort restaurants for lunch (room service wasn't available at that time of day), I felt the bitterness of how dependent I was/am.

I was humbled. Not only did I need the wheelchair, but I could not do much of anything without it or my driver (George). I got to know exactly how to be loaded and secured on a resort bus, boat and monorail. About mid-way through the trip, I could barely get myself in and out of my wheelchair without an enormous amount of help from George because of how weak I was and because my Fibromyalgia was flaring horribly. George actually fell between the tracks of a ride (Test Track in EPCOT) as he was helping me out, sounding off the ride's alarms.

Photo property of KLW

The last day before we flew home, I was unable to get out of my chair at all. We went to several shows and also on rides that allowed my wheelchair to go in the vehicle including Kilimanjaro Safari (photo on left), Buzz Lightyear Ranger Spin and Toy Story Mania. We also only used companion bathrooms where George could assist me.

No, it was not the "best" idea to continue to push through each day on little sleep with the amount of pain, disorientation, weakness, vertigo and over-stimulation that I was experiencing. But, I needed to. Did I mention that my immuno-supressed husband got a cold that lasted throughout? I'm not surprised that he got sick at the Happiest Place on Earth where so many kiddos and germs lurk. But he continued on, pushing me in my chair which bothered his arthritis as he was walking incredible distances. However neither of us questioned ourselves. We had an unspoken knowledge and agreement that the benefit of being there and doing what we could was so much more than the difficulties.

Photo property of KLW

Flying home was...different. I could not pass through normal security screening because I had no strength to get out of my chair to walk or stand on my own. So, I a female officer got to know me very intimately as I was patted down extensively. I had to be transferred onto the plane by being strapped (four belts) to a special chair that fit down an airplane aisle while two men carried me. I was unable to use the bathroom during the flight which was anxiety-producing (thank goodness I'd downloaded movies to my iPad as a distraction). And when we arrived at O'hare and they had to bring me out of the plane to my wheelchair using the special aisle chair. I cannot explain the humbling nature of it all.

Actually, it was more than humbling; it was humiliating. As soon as I was in my own wheelchair and away from the gate, I cried.

Our trip was so lovely, but there was no getting away from the limitations that have increasingly encroached on me. My view was mainly of people's rear-ends and children in strollers and I frequently had to ask George what was happening because I could not see. I had a fellow vacationer tell me "that is where the handicapped people go." I did NOT like being called handicapped even though I have come to terms with being called "disabled". I had a woman scoff at me as we were getting off a ride and say "I can walk better than she can." And she could..though I'm not sure why she felt the need to point it out as she was using a wheelchair herself to get around. Maybe because I am young? Maybe because if I put makeup on and a nicer outfit and have a huge smile on my face because I am genuinely happy, I can look like I'm not sick?

Photo property of KLW

I took 4700 photographs on our trip as I am enjoying my new spankin' new DSLR. As I was looking through my photographs today, I had intentionally taken photos of all of the "handicap" signs that directed us everywhere. But, I also found something I hadn't done intentionally...photographs of handrails that look more like bars in the images. I did not realize how trapped I felt, even in this fantasy vacation with my best friend and love of my life. I had wanted to get away from it all, but as I cannot get away from myself, I cannot get away from my limitations.

Photo property of KLW

We had been to this destination on our honeymoon in 2006 and again in May 2010. Even though I had used a wheelchair much of the time during our last visit, I had walked some days and it was sad to see how I truly could not do what I could do less than a year and a half ago. We had so much joy everyday and I hate that I'm writing so much about my limitations but that was just part of what we experienced.

Photo property of KLW

So even on a vacation that was intended to take us away from reality into a fantasy, joy and pain still coexisted. So this is my much needed vent, but what I will remember are the connection George and I had and the rejuvenation we experienced of our spirits.

Migraine and Suicide: Links to Blogs

2011-09-10T06:00:00.000-05:00

To conclude our series, here are links to blogs who have either written about their own experiences with Chronic Migraine and suicide or are discussing others' stories of Migraine and suicide. Always remember you are not alone and we are here as a community to support you.

This Suicide Was Senseless and Preventable by Teri Robert at About.com is a story of a woman who completed suicide because of her Migraine disease and how the health care system failed her.

Migraine and Suicide II by Heather at A Journey of a Migraineur is a discussion about a private conversation Heather and I had. She quoted me saying, "I want to live. But I don't want to live like this." She also discusses how depression is a disease and it is okay to be on medication for it.

Signal Boost: Migraine and Suicide by Sharon at After Gadget is a post that reaffirms the need for the discussion of suicide as it relates to chronic pain. Sharon also discusses her own feelings of being suicidal at one point in her life.

A Little on Suicide and Migraines by Myth at Brainless Blogger is a very candid post about her experience with attempting suicide.

About Suicide Prevention by Jeanne at Chronic Healing is a post where Jeanne shares what she learned in a class called safeTALK which stands for ‘Suicide Alertness For Everyone’/'Tell, Ask, Listen, KeepSafe.' What she learned is a lot of information on how to help someone get the resources they need when they are suicidal. Great read for family and friends.

Miracle by Katharine at Healing My Migraines is a post from a couple years ago when Katharine was having some improvement in her anxiety and level of pain after a very difficult period. She discussed her feelings on how she had been at the end of her rope and didn't want to live in pain anymore.

Migraine and Suicide by Jamie at Migraine: Living in Pain is a post where Jamie shares a time when she attempted suicide and wound up in the ICU. She wants others who may have had a similar situation to know that having feelings in the darkness is nothing to be ashamed of and to speak out when you are feeling that way because you are not alone.

migraine kills by Grieving Mom at My Migraine Connection is a post by a member who's son took his life because of Migraine pain was not relieved and he could not find any hope. Take time to read the comment section as it is very moving.

Migraine, Stigma, Suicide, Stop! by Nancy Bonk at My Migraine Connection is a post where Nancy asks why aren't we stepping up as a community to fight for the research dollars we need as Migraine is the 12th most disabling condition in the US? A very emotion-filled post written after a man who was told he had to live with his pain took his own life. The point being that this is a deadly disease and we need to fight for it.

Migraines Never “Nice,” Sometimes “Fatal” by Teri Robert at My Migraine Connection is another empassioned post after hearing of a young man who took his life because of his Migraine pain.

Do You Ever Wonder? by Wendy at Picnic With Ants is a post from earlier this year when Wendy discussed a very difficult day she had and was very honest about how she felt.

Maria Marotta, a Life Lost to Migraine by Teri Robert at Putting Our Heads Together is a post on Maria Marotta, wife to Rich Little and how she took her own life because of the hopelessness she experienced with Migraine Disease.

I would like to say a special thank you to everyone who contributed to this blog series. Your effort has meant so much to me and I know will touch many many people. You are wonderful! All my love and support to you!
Kelly
Fly with Hope!

Migraine and Suicide: Experiences From The Community- Perspective Determines The View

2011-09-09T07:30:00.000-05:00

The following is a personal story from someone who is a Christian.

"I don't pretend to understand what it is like to carry the burden of chronic pain - like you do, like my sister in law the hospice minister does. I've got no first hand experience with migraines, but I have attempted suicide - as a Christian. Too often Christians feel like they have to put a "happy face" on everything, and deny that anything is wrong - and we do a real disservice to a hurting world when we do. Following Christ doesn't guarantee you a stress free, pain free, rich and happy life...and we need to stop telling people that it does, 'cause when they find out otherwise they get real disillusioned. Our reluctance to be honest about our suffering also isolates us from those who would come alongside to assist and support us - if they knew what we were going through.

My conversion experience happened at age 13, but I had little in the way of discipleship. What I DID have was an overprotective, controlling, dominant father - and a mom who had died the previous year. Roll the clock forward a few years, make me a hormone-filled undergrad at college, and finally give me some freedom - and the results were pretty predictable. I found someone to lose my virginity to - and fall head over heels in love with. When she eventually decided to leave me in order to marry a previous boyfriend who had been physically abusive to her, I fell off an emotional cliff. Eventually, I had a long talk with God, and told him that I was ready to come home - now. I wanted no more of the pain I was going through.

Then I followed through with my plan and cried myself to sleep.

Waking up was one of the strangest experiences...I was both relieved and disappointed. Eventually, I planned another attempt. But before I put that plan into action, I ended up spilling my guts to a good friend of mine (my daughter is named after her). She invited me to a prayer group that she was in - at the time, the "group" consisted of her, and the woman I would eventually marry. To say that group changed my life is a something of an understatement...

I find myself amazed at all I would have missed out on down here, if I had succeeded in going home on my timetable. Deep friendships...marriage...kids...a fulfilling career...an amazing church...being used by the God I love - I had no idea of all He had in store for me. We can only see so far with the tears in our eyes blurring our vision - at those times, we just need to trust that our Father sees more clearly than we do."

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

Migraine, Suicide and Faith; What Does God Really Think When I Feel Suicidal

2011-09-09T07:26:00.000-05:00

This post is written by a dear friend and Migraineur, Cyndi Jordan. Her compassion flows through her words and I am honored that she would be a guest blogger on this topic:

The subject of suicide is frequently a contentious topic amongindividuals of the Christian faith. Itseems to run counterproductive to all that the Bible teaches, and there aremany who treat individuals with depression or suicidal ideation as if they havecommitted an unforgiveable sin. Toooften Christians with depression are made to feel that their depression is asign of spiritual weakness. They aretold to “trust God,” “to pray,” and “to ask for forgiveness.” Frequently the basis of their very faith ischallenged by those who believe that a true believer would never even considertaking their life.

While it is clear in the Scriptures that our bodies are thetemple of God (I Corinthians 6:19 and that it is He who determines our days(Proverbs 16:9), it is equally clear that “there is no condemnation for thosewho are in Christ Jesus.” (Romans 8:1) We are dearly loved children of the Lord and while our depression andthoughts of suicide may grieve Him, they are not something that can separate usfrom the love of God. (Romans 8:38 &39) I believe that it is that sense of separation, of feeling not accepted forwho we are and how we feel by God and by others, that causes further estrangement,isolation and depression.

For that reason, it is important that when we feel the mostdepressed and anxious that we draw near to God, knowing that He draws near tous. (James 4:8) He knows who we are and what we think andknows that we are but human, sinners, ragamuffins in need of a loving heavenlyFather. (Psalm 103:14) We come to Him,at all times - in need and in plenty; with feelings of desperation or of joy -as beloved children. He does not lookupon us with disdain, condemnation or disappointment. He does not hold back good from us because weare behaving in what some may consider an unfaithful manner. No, He regards us with love, compassion andmercy - the very things we need most from the people in our life and the churchas well when we are suffering. (Matthew7:9-11)

It is not God who scoffs at sinners or has no mercy for thosewho are depressed and feeling suicidal. In fact, the Bible has several examples of great men of God who at onetime in their life felt that desperation and wanted to die. Elijah, one of the greatest prophets, ranaway to the mountains and there said “I have had enough, take my life.” (IKings 19:4) Scripture says that in his weariness, he sat down under a bush andprayed to die. How those words resonatewith me when I am feeling most depressed - how many times have I said thosevery words! I may not have sat under abush, but I have withdrawn and just longed for it to all be over with.

As I read 1 Kings, I can visualize Elijah so despondent, beggingGod for relief, begging God to show Himself. I see him being like me when I cry “God, if you are really God, takethis pain away from me.” Interestingly,Elijah also looked for evidence of the Lord - he looked for it in a powerfulwind, an earthquake and a fire - mighty manifestations of strength. And like Elijah that’s what I want, but alsolike Elijah, I find that God doesn’t come to me during those times withpowerful healing or miraculous insights (although it is certainly within Hispower), but rather in the still quiet voice like Elijah heard.

I believe when I am most desperate God does not require anythingof me, but to be still and to wait so that He can whisper in my ear how much Heloves me, how He promises to get me through what I am experiencing, that He hasa plan and a purpose for me in spite of my condition and that it is for good.(Jeremiah 29:11) He does not rage at mydisbelief, at my emotions, at my desperation. He does not chasten or punish me. He does not ask me why my faith isn’t stronger or tell me to praymore. He just accepts me.

There is so much freedom in that - freedom from the judgement,shock and disdain that many in the Christian community portray when the wordsuicide comes up. There is nothing I cando to shock God or to separate myself from Him. The Scripture is comforting when it says “wedo not have a high priest who is unable to sympathize with our weaknesses, butwe have one who has been tempted in every way, just as we are--yet was withoutsin.” (Hebrews 4:15) Jesus himself cried out “my God, my God whyhave you forsaken me? (Matthew 15:34). Moses in Numbers asked God to kill him if life was going to continue theway that it was. Jonah, because of thesituation in which he found himself, said “Now, LORD, take away my life,for it is better for me to die than to live.” (Jonah 4:3)

We are not alone in our feelings of desperation. They do not make us a lesser person or alesser Christian. They do not prevent usfrom going on to doing good things and being a treasured and productive childof God (i.e. Elijah, Jonah, Moses). Ourdesperation amplifies our need for God, our dependence on Him. It also amplifies His amazing, non-condemninglove for us. Those who feel less thanbecause of their suicidal ideation or are made to feel less than by otherChristians or church goers are not listening to the voice of God as portrayedin the Scripture. God never bringscondemnation, only conviction, and with that conviction comes the love and thegrace to make it through the dark night of our souls. God longs to walk with each of us during thatdark night of pain, of depression and to give us hope when things seem mosthopeless.

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

Please read today's personal story, Perspective Determines the View.

Migraine and Suicide: Experiences from the Community- I Want to Live! But I Don't Feel Like I Am!

2011-09-08T07:00:00.002-05:00

The following is a personal story from someone wholives with Meneiere's Disease (this has caused her to have severe hearing loss over the last two years, with profound tinnitus, and disequilibrium or vertigo most of the time), Chronic Migraines. chronic pelvic & hip painand bi-polar illness (which has been under control for 16 years).

"I think people with chronic illnesses are muchmore likely to think about, and attempt suicide. I have, twice. The first timewas because I was undiagnosed with bipolar illness. Before I was being properlytreated for bi-polar illness, it was a rough time. One moment I didn't think anything could hurtme, the next I'd be stuck in months of despair where I couldn't imagine gettingout of it. I was involuntarily committedto a mental illness facility after that suicide attempt. I know they often get a very bad rap. But the facility I went to really saved mylife. I was there for 2 weeks, and I wasamazed at how much they could help in such a relatively short period oftime. A lot of the help came from theother patients. We had camaraderie,perhaps if we'd had that type of support before, we wouldn't have ended upthere...but that's not fair. We hadmedical issues that needed to be addressed, however, having the support of somany others who were in the same boat, was very therapeutic.

The last time was because I was so sick. I was sodown. I felt like such a burden, and so useless. Finally, I reached the end ofmy rope. I locked myself in my bathroom and started to follow through with myplan. Luckily, my husband broke in the door and stopped me. He was devastated.I've never seen him in such a state. He was broken. I had not gotten to the point where I was in immediate danger. I began to see that he needed me, even if I wasn't"useful" in my eyes. It hurt me so much that I had hurt him. All Iwanted to do was to relieve his burden. I wanted to make things easier on him. Itruly felt like the world would be better off without me. But I was wrong. Atleast one person, would have been permanently hurt. When I saw the horror in hisface, how he lost control...I had never seen my husband in that state, andnever want to again. It pains me to say, that at times I still wonder. I justwrote in my journal this morning, that I still wonder, if the pain would stop,would it be better, would the noise stop, would I stop being such aburden...but, I would never do that to my husband ever again. Please, know,that I don't want to die. Really I don't. I want to live! But I don't feel likeI am. I feel like I'm stuck between life and death...in torture. I have tobelieve it will get better. My husband and I received a lot of help from counselingand we feel closer now, and able to talk more about my disability without guiltbeing involved. Because we were seeing a therapist together it made us stronger.We communicate better about our feelings about my disability. About everything."

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

For the next post in this series, please go to: Migraine, Suicide and Faith: What Does God Really Think When I Feel Suicidal

Migraine and Suicide: For Family, Friends & Caregivers

2011-09-08T07:00:00.000-05:00

One in 10 suicides linked to chronic illness, study finds. Click on the link and you'll find an article about a study done in the UK that found just how at risk those with chronic illness are. Globally, we are suffering and we need support.

This post is from those of us who have Chronic Migraine and Chronic Pain to you, loved ones, family, friends and caregivers. Thank you for reading this post because it means you must care and that means a great deal to us. In this post, we want to tell you how we feel, why we need you and what you can do to support us. I have also included linked resources that you can use for your loved one in crisis.

When I asked the community to share what they would want you, family/friends/caregivers to know about why they sometimes feel suicidal, here are what three individuals said:

I sometimes feel like I'm at the end of my ropebecause of my chronic migraines because it's unrelenting. It has changed somany things in my life that I sometimes don't even recognize my own life. Ithas flipped my world upside-down, and there's no guarantee that things will getbetter. It can be very difficult to accept that my life has completelychanged.

I would want them to know its not thatwe’re crazy or that we just have emotional issues.When you are sick and you don’t think you are ever going to get well againsometimes you want to make that sickness or that pain stop. Its not that you’rementally ill. It is a matter of just wanting to stop the pain/illness.

When you have chronic, intractable migraine (andfibromyalgia), a loss of quality of life is inevitable, especially if you areyoung and in the prime of life. At my age, I am supposed to be building acareer, saving money, having children, and moving about in the hustle andbustle of society. But I am not doing any of these things. I am stagnant. Ihave to say "no" to the majority of activities my friends go out anddo, because even if I am not in pain at the moment, I have to carefully weightthe consequences of my actions on what I might feel like the next day. As muchas I love my friends, I think if they had just one 24-hour bout with migraine theymight understand why I hesitate to put myself in a position to bring one on.Therefore, it cuts me to the core when I have to say, "I cannot attendyour function", and it adds to the stress of having migraine because Ifeel as if I am a letdown. I am happy to know that people want me around, butit hurts that I know I'll pay for being someone's company. This disease silently takes things from you that youtook for granted before. Things that other people do daily withoutthought. Migraine causes a constant battle within.I just want my friends to understand that I lovethem, but migraine has radically changed my life and in some cases it's changedme. I am not who I was 6 years ago. I am not in a good place. There are manydays when I don't enjoy life and it's a rare day when I don't have to pushmyself to leave the house. This is not life. It's imprisonment.

When a person who has chronic Migraine/pain is suicidal, that person cannot see a way out of the unending physical trauma that is happening to them. That they are talking about suicide or feeling like they want to leave this life is not a commentary on how they feel about you. In fact, their thoughts of suicide have nothing to do with you. Yes, it affects you, but in the moment our feelings are about ourselves.

Before I share with you the community's list of how they want you to respond when they are going through a dark time, please read the National Suicide Prevention Lifeline's What if Someone I Know Needs Help. There you will find some information on topics such as guiding someone whoneeds help online, how to be helpful to someone whois threatening suicide, how to be aware of the feelings that the person isgoing through. The following is what the National Suicide Prevention Lifeline says to do when someone is threatening suicide:

Be direct. Talk openly and matter-of-factly about suicide.
Be willing to listen. Allow expressions of feelings. Accept the feelings.
Be non-judgmental. Don't debate whether suicide is right or wrong, or whether feelings are good or bad. Don't lecture on the value of life.
Get involved. Become available. Show interest and support.
Don't dare him or her to do it.
Don't act shocked. This will put distance between you.
Don't be sworn to secrecy. Seek support.
Offer hope that alternatives are available but do not offer glib reassurance.
Take action. Remove means, such as guns or stockpiled pills.
Get help from persons or agencies specializing in crisis intervention and suicide prevention

Click here to find out common warning signs of suicide. “What to do if you think a person is having suicidal thoughts” is a guide that will help you talk with someone you think might be having suicidal thoughts.

I had spoken with a friend for a few hours on the phone after she told me she was suicidal. I had supported her in many different ways, but she was not following through on getting help and I was very scared she was going to hurt herself. So, I decided to call the lifeline. The person on the phone supported me in supporting my friend. The lifeline was a vital resource for me at that time. Do not hesitate to use it. I was very relieved to get an outsider's opinion on the situation I was going through. If you think your family member or friend is in crisis or you simply need support, call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

So, now I want to share with you the ways the community want you to know how you can help support them when they are feeling suicidal or close to the end of their rope.

Ways To Respond:

“Just be there for me.”
“Just be there to listen."
"Ask: how can I support you?"
"Pay attention."
“I would tell others to make sure they expresstheir love and support, but without any judgment.”
"Extend meaningful hope to the pain sufferer not triteeuphemisms."
"We just need to know you care. The words“I love you,” “I’d give anything to be able to help you feel better,” and “I’mon my way over” are powerful words. There is great hope to be found in love."
“ Try to help the person in question realize theyhave a purpose, they aren't just a burden.”
“Try to talk me down lightly.”

Things To Avoid:

"Don't try to keep us from attempting only by saying you would miss us and you would be heartbroken. It makes us feel you are not acknowledging our suffering and that you think this is about you when it is not."
" Do not be judgmental of my feelings or actions."
“Do not make light of the subject no matter howmany times you hear someone say they wish it was over, and they don't doanything. You never know when they may reach the end of that rope.
“Anything other than being supportive is probably not agood response.”
“I do not want them to freak out.”
“Don't go the, 'This is stupid! You know better!'route. That makes the feelings only worse."
"When someone is saying you'replaying 'woe is me, people has it worse than you', that makes the feelingsworse, because it brings up the thoughts, 'well others have it worse than me,than I'll prove I can make my life worse.'"
“Don't act like you know what I'm going through,unless you've been through something very similar."
"We who are in pain, don’tneed to hear that “it’s going to get better,” “it could be worse,” or “justtrust."
"Don’t try to solve our problems."
"Saying "don't say that around me" is terribly disempowering. If I trusted you enough to say that I feel awful and that I'm reaching out for your hugs or support, the fact that you shut me down means that I'm not going to ever going to feel the same way about trusting you with my intimate personal feelings again."

One community member summarizes this section very well when they said,

Do not freak out when the pain sufferer says “I can’ttake it anymore.” Don’t try to reasonwith them about how selfish they are or how much you’d miss them; just bethere. Try saying “Boy, I don’t know howyou handle this - you truly amaze me by your strength.” Also, don’t be afraid to use the word“suicide.” It’s okay to ask if theindividual is thinking about harming themselves. If they are, form a “no suicide” covenantwith them. Be the person who will bethere during the dark times - not to keep them safe - but to let them know theyare loved and not alone. You may not beable to take away the pain, but you can take away the sense of isolation. Words don’t do it; presence does.

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

As a family/friend/caregiver, I recommend you read this very short post written on another site by a mother about her son called migraine kills.You might also read the comment section as it is very moving.

Please read today's post from a community member, I Want to Live! But I Don't Feel Like I Am!

Migraine and Suicide: Experiences from the Community- When Living Seems Too Hard

2011-09-07T07:28:00.000-05:00

The following is a personal story from someone who lives with Migraine with and without aura, Retinal Migraine, Fibromyalgia and Chronic Fatigue Syndrome.

“Yea though I walk through the valley of the shadow of death, itis not death I fear but living.” Theseare words I wrote several years ago when trying to process my own desire toescape the pain and isolation in which I was living. I use the word “escape” rather than suicideas I never really wanted to die, I just wanted to somehow escape the chronicpain and loneliness I was experiencing. Some would call that desire “selfish,” I see it as desperate and,frankly, normal.

About five years ago I began experiencing chronic daily migraines(rather than the “normal” two to four a month). Having already exhausted all the resourcesfor migraine help in my hometown over the years, I began to travel visitingmigraine specialists around the country. I began each of these journeys with great hope - sure that someone wasgoing to be able to tell me what to do to manage the unrelenting pain in whichI lived. Yet time after time, I ran upagainst the fact that I have migraines that are “particularly difficult totreat.” The Bible is quite right when itsays that “hope deferred makes the heart sick.”

As a result of the pain of migraines and its accompanyingsymptoms, I had to leave the job I loved and found the social and familialframework of my life becoming smaller and smaller. I became a virtual prisoner in my ownhome. I was in pain, with no discernible help for my migraines,feeling alone and not understood, and experiencing the death of my goals, hopesand dreams. Pain is one of the mostisolating conditions one can experience - particularly chronic, invisible painsuch as caused by migraines or other illnesses that the world, in general, doesnot categorize as being catastrophic. Yet, I believe there is nothing quite as catastrophic as being in pain andfeeling like there is no hope,no solution and no understanding. Penney Cowan,founder of the American Chronic Pain Association, said “Living in pain isdevastating, and not having others believe you is even more isolating.” I don’t have to tell my fellow migrainesufferers how exhausting it is to have to “justify” your illness. We don’t have cancer or a broken bone or someother syndrome that others relate to and understand the pain associated withit. We often face individuals whobelieve that our pain is exaggerated or the result of our emotions. “Chronic pain is an illness in its ownright,” says Dr. Portenoy. “Patients seeking care for pain should be given thesame respect as those with any other ailment.” (Both quotes are from Women’sDay magazine, April 1, 2011.)

As a mental health therapist, I have walked with many clients whofelt desperate and saw suicide as one of their only options. As an individual who suffers from depression,I have personally experienced that desperation and seen suicide as my onlyoption. Fortunately, I am one of thelucky ones who responds well to SSRI’s and have found an outstanding therapistmyself. Suicide hasn’t been in a viableoption in my mind for well over twenty years; however, the desire to escape -to find any way out of the prison in which I live has become a regularcompanion. How many times have I been inpain so intense that I just wanted to put my head through a window? How manytimes have the platitudes of caring family and friends made me feel like therewas no hope? How many times have Iwished I just wasn’t me?

At this juncture, one may ask “how is that not suicidalideation?” The only answer I can provide is that I have made a stalwart promiseto myself and to others that suicide is not an option for me. I do not wish to minimize the desire of thosein pain to “just end the pain” by making this seem simplistic, for it is farfrom being so. There are times when I amhurting so badly and feel so alone that I actually wish suicide was an option. It simply is not."

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

For the next post in this series, please go to For Family, Friends & Caregivers

Migraine and Suicide: What Are You Doing for Prevention?

2011-09-07T07:27:00.002-05:00

I have heard the phrase “suicide prevention” in the past, but never really stopped to consider what it meant. Dr. Paul Brand, who wrote the book The Gift of Pain said,

You do not want to start weaving the parachute when you're about to (need it). You want to have been weaving the parachute morning, noon, and night, day in, day out. And then when you need it, it might actually hold you.

Suicide prevention is something that we must do every day as we all know too well the ups and downs that Chronic Migraine and chronic pain bring us. For me, prevention means having a routine in place that will support me over the course of time especially when things get tougher. Some prevention ideas discussed will be familiar as they were also mentioned as coping mechanisms as they are effective tools for both. However we will be flushing them our as a prevention measure as opposed to just a rescue measure.

-In the post, What to Do When You're Close to the End of Your Rope, we discussed coping mechanisms. It might be a good idea to write down a list of coping mechanisms you find helpful so you can easily turn to it when things get tougher.

-Over the years, I have kept a ragged pocket notebook that I call my "Chronic Migraine/Pain Toolbox." Having a personalized booklet put together ahead of time is quite handy when I am having a close to the end of my rope moment. Inside its pages are the following:

inspirational quotes from books
encouraging things others have told me
Bible verses
lists of non-medication ideas to use when medication is not available (i.e. diaphragmatic breathing or taking a bath by candlelight)
a letter to my husband on how to handle me when I'm freaking out from pain
a letter I wrote to myself.

This letter was from the self who had seen some improvement to the self who is scared and despairing because she is so ill. You can read the letter in my post, Letters to Myself.

-One of the coping skills we talked about was getting professional help. In my opinion, seeing a therapist on a regular basis, not just when you are in crisis, is a vital way to work through the emotional side of chronic Migraine and chronic pain. Sarah Gomez, PsyD from the Jefferson Headache Clinic in Philadelphia who contributed to the article A Third Space for Migraine Patients said:

The pain and isolation that migraines produce commonly rob migraine sufferers of the things they enjoy most. This is tremendously taxing; managing both the symptoms that migraines bring with them, as well as what they take away is exhausting. In psychotherapy we spend a lot of time processing this complex experience, as well as exploring ways to counteract the clutches of the disease.

I have been seeing a therapist since my Migraines/pain became chronic. She has become part of my support system as I navigate the ups and downs of my chronic Migraines and chronic pain. Going to therapy has helped me work through self-worth issues that many chronically ill people face. I have discovered I am worthy and loved just as I am even if I do burden those around me and am not able to contribute to society in the way I wish. Chronic Migraine and chronic pain often affect every aspect of our lives and having someone to talk with about this is invaluable. My therapist also makes makes home visits when I cannot drive to her office and I am aware there are therapists that do phone visits as well if that is what you need.

-Stay involved and active in the Migraine/Chronic Pain community.

Finding out how you can be involved/become an advocate will help you to feel better knowing that you are doing something positive for the future of your disease or pain condition. If you have Migraine disease or other headache disorder, check out the Alliance for Headache Disorders Advocacy (AHDA) to see how you can get involved. Join the mailing list and participate in action alerts. The Migraine Research Foundation is another great place to get involved.
Follow the current research, read articles or simply read blogs that summarize the research for you. If you are informed, you will feel empowered about your disease.
Reading blogs of those who struggle with similar chronic illnesses will help you to commiserate, collaborate and may lead to personal connections. Through my connections on forums, and blogs, I have found friends who I email and talk on the phone with regularly. They are like family to me and because they know me in the better times, I trust them to support me in the worse times.

- Dr. Bill Young a headache specialist of the Jefferson Headache Clinic wrote an article I highly recommend called A Third Space For Migraine Patients. His article was not scientifically based, and was great food for thought. He discussed how how chronic Migraine/pain can become all consuming and he suggests that it might be helpful for patients to diversify their interests. More specifically he suggests chronic Migraine patients find what he calls a "third space" or an activity/space outside of Migraine that one finds to be meaningful. Dr. Young said,

Migraine disease is so consuming, and has such animpact on family and work relations, that finding this third-space sanctuarybecomes an ever more critical inoculation against becoming overwhelmed.

Photography is my third space sactuary. When I am composing a photograph, I am completely drawn in and all thoughts of how I am feeling drift away. There is a joy and enjoyment I cannot describe and I can feel my spirit take a refreshing breath. This seems to be the purpose of a third space. Dr. Young recommends to "keep trying until you find something meaningful." The Migraine patient he referred to in the article had a third space of singing once a week at synagogue even though it made her pain worse temporarily, it was beneficial for her emotionally in the long run. Perhaps your third space is poetry or writing letters or drawing or dancing or knitting or volunteering. Whatever it is, finding a third space seems to be a good way to help prevent becoming overwhelmed.

The following prevention ideas were put together by a community member. They are incredibly insightful. Items discussed include making a commitment to yourself when you are not hurting, providing yourself external ways to remind yourself why you chose to live and have hope, making a covenant with a safe person, and normalizing your desperation.

"First, as one who desires to escape pain through “whatevermeans,” it is important to establish boundaries - that you make an unerring commitment toyourself when you are nothurting. I have found that in the midstof pain and loneliness, there is no room for clear thinking. For this reason, I sat down and wrote a listof promises to myself when I was “in my right mind.” When I am going through a difficult time andmy thinking is driven by pain, I pull these promises out and read them to myselfin order to remind myself of what is truly important to me.

Second, provide yourself with an external means of remindingyourself why you choose to live and have hope. In my case, I personalized a number of Scriptures and laminated them soI could read them during difficult times. One of the ones I wrote was “MyRomans 8: 37, 38” “In all things I aremore than a conqueror through Him who loves me. For I am convinced that neither pain nor depression, loneliness orinsecurity, self-doubt or condemnation, rejection or ridicule, people’s opinions,finances or personal productivity, the ability to be involved in the church orthe community, anxiety or an inability to meet earthly standards can separateme from the love of God in Christ Jesus my Lord.” However, for those for whom Scripture is nota source of hope, you may ask a good friend or close family member to write aletter to you outlining why you are important to them and what you contributeto the world around you for you to read when you need to. (A note to those who are writing such aletter: your job is not to talk them out of suicide but to state for them the“truths” of who they are as you see them.”)

Third, make a covenant with a safe person. I personally have several people who when Iam going through a particularly difficult time, I text the word “pray” tothem. They don’t text me back asking mewhat is going on, they simply text back that they are praying for me and thatthey love me. It keeps me grounded -connected to others - so that I don’t feel so isolated in my pain anddesperation.

Fourth, normalize your desperation. It is normal to feel desperate when you arein so much pain. It is normal to want todo almost anything to get out of pain. It is normal to fear what the future holds when today is so bleak. BUT remind yourself that you have been inthis place before and that you made it through it. It wasn’t easy - it may have been the hardestthing you ever did, but you know that your pain isn’t a sign of weakness. In fact, it is a sign of your strength. Not many people can live day in and day outlike you do and emerge victorious. Thevictory isn’t in overcoming the pain, but in learning to live with it - to makeit through the next flare-up - to continue on when many would give up. I frequently say to myself “of course, I’mfeeling desperate - who wouldn’t in this kind of pain or when they feel soalone. This is a normal feeling, andI’ve made it through it in the past and I will again in the future."

Do you have any prevention ideas you'd like to share? Please post in the comment section!

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

Please check out today's personal story from a community member: When Living Seems Too Hard.

Migraine and Suicide: Experiences from the Community- Greater Appreciation

2011-09-06T07:08:00.001-05:00

The following is a personal story from someone who lives with Chronic Migraines and Fibromyalgia.

"For me, the chronic pain and how it affected my life was very depressing. The worse things would get the more depressed I would get. I never really sought help for the depression and when it was offered, I refused. I felt like I just had to stay strong and would do it on my own. After I had been in and out of the hospital for migraine treatment several times, I knew the doctors didn't really have any more ideas on how to treat me and they didn't understand why I wasn't responding to treatment. I felt hopeless like they weren't going to help me get better. As that hopeless feeling kept growing I kept getting more and more depressed. I didn’t know how to get out of the hopeless helpless depressed state I was in. This is when I would start to think, “if I don’t have any more options, I am either going to live like this the rest of my life or I’m going to stop my life.”

Suicidal thoughts would come into my mind, but they weren’t so severe that I was going to act on them. I would try to find hope in things, such as if a migraine doctor appointment went well or if I had a good day or so. But the more hope diminished, the more depressed I would get, and I would start to feel more helpless. Then I started having more serious suicidal thoughts.

After my last hospital stay for Migraines, I was still in more pain than I thought I could handle. They had tried everything they had thought of to try and I felt completely hopeless. I got out of the hospital thinking I was going to be constantly ill. And I thought I couldn’t do it. I didn’t feel strong enough to keep doing it.

When I got home from the hospital feeling this way, I also had to face the family issues at home. The combination of the stress of fighting with family, and thinking that there was no other way to treat my chronic Migraines was so overwhelming that the suicidal thoughts I had before hit me hard. It was a matter of “I’m done now.” I decided then to try to end my life.

My parents intervened and got me to hospital. By the time I got to the ICU (Intensive Care Unit), I was at risk for a heart attack, kidney damage, liver damage and brain damage and the doctors were worried about all of these. They questioned if I would wake up or if I did, I could have the damage that they were worried about. I spent four days in the ICU. When I first started waking up, I was surprised I was alive. As I was more conscious, I became more thankful I was alive and that I had survived with out any damage. I wasn't meant to die at that time. I knew for a fact that God wasn't ready for me to come home yet, I still had purpose in my life and He had saved me. The depression did not get much better. But I knew that there was still a purpose and that gave me a little bit of hope. I realized I didn’t want to die. I thought that I did but I truly didn't want to die. I still had something left to do with my life.

It has now been nearly a year and a half since the attempt and the hospital stay. I have definitely struggled since I was released from the hospital and behavioral health unit. I can’t say it has been easy, it is like a roller coaster ride. I start feeling hopeless sometimes and that can affect how depressed I get. But finding and having hope will lift the depression and that will get me through. It is definitely up and down. I have had bouts of the depression and when I did, I thought about how I attempted before and how maybe I could complete. But then I would remember I made it through for a reason. I was given that second chance and I didn’t want to take it for granted. The second chance gives me hope of a better life ahead of me. I remind myself that there was still a purpose for my life. This would be enough to bring me out of the the depression or suicidal thinking.

I definitely changed after the attempt. I know now that it is okay to reach out for help. After the attempt, when I was suicidal again, I reached out and called my best friend for support. I got into therapy. I didn’t just keep the suicidal thoughts to myself because I knew that I could reach the point that I would act on them again. I knew I needed to have help to get out of the way I was thinking once I got to that point. I know to reach out now, and I don’t want to attempt suicide again. But life hasn’t been all about fighting off suicidal thoughts. Surviving my attempt gave me a new appreciation for life. I still struggle with chronic pain and depression, but I cope with it better now. I know that I can still do something with my life and that keeps me going."

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

For the next post in this series, please go to: What Are You Doing For Prevention?

Migraine and Suicide: What to Do When You're Close to the End of Your Rope

2011-09-05T08:05:00.001-05:00

Sometimes as chronic Migraine and chronic pain sufferers, we find ourselves not necessarily in crisis or immediate danger, but close to the end our rope.The photo of the stuffed panda represents how I feel when I am close to the end of my rope. I see myself exhausted and vulnerable. Its sparse fur that stands on end, reminds me of how on stressed out I feel.

In the place where I am close to the end of my rope, I have had enough of chronic Migraines/pain and feel quite frazzled. In that moment, I have difficulty coping with it all and I feel stuck. The truth for me and for others is that when I am close to to the end of my rope, I might not be thinking about suicide as an option, but I need a way out of the place I am in because being close to the end of my rope could turn into being suicidal and being at the end of my rope.

However being close yet not at the end of my rope means I have at least a small amount (even if it is a tiny bit) of hope enough to think there might be a way to improve my situation. In the past, hope was just a wish that my situation would improve because I didn't know how to turn that hope into reality. And when you are close to the end of your rope, you are often too exhausted to try.

Let's talk about hope becoming reality. When we are close to the end of our rope, we need to rely on coping mechanisms to support us. Coping mechanisms will be the things that will help change our state of mind. Remember, if you're close to the end of your rope, you're probably pretty exhausted, so your ideas should be things that you can reasonably do. The following is a list of ideas came from some community members (whose responses are in quotes) and myself.

“Call your doctor. See what can be done/changed. Tell your doctor something has to change because you are having a hard time coping with the pain.”

A couple months ago when I was pretty hopeless about the severe state of my fibromyalgia, I called and asked my doctor if he had any non-medication ideas for me. He did and much to my surprise it made a huge difference in my pain and thus my mood! Often times even a small amount of change can lift my spirits about the state of my chronic pain.

“Get professional help. If the first person you see, doesn't seem like a good fit, seek out someone else. I can't stress enough that not only the person with the illness needs a neutral party to talk to and help, but also the caregiver needs help too.”

Getting professional help may be seeking out a therapist or even a psychiatrist to evaluate if you need anti-depressants or anti-anxiety medications to help you through this phase. I see a psychiatrist and both my husband and I have been seeing a therapist jointly and individually for many years for support in journeying through chronic pain.

“Journaling has been literally my life saver a couple of times.”

Journaling helps me to express and work through my feelings. Screaming on a page often feels very good.

“Dressing up to make myself feel better.”

I wrote a post on this topic called Wearing the Turquoise Dress.

“Use your faith....I write bible verses daily”

I have found great comfort in prayer. For me prayer is a practice of quiet mediation of listening and connecting with God. Whatever your faith practice is, perhaps reconnecting with it will center you in times when you feel you have come close to the end of your rope.

“Go to a mental health group.”

“Going for a walk.”

Sometimes even when I am unable to walk around the block or on a treadmill, I will do some simple stretching or gentle tai chi which calms my mind and body.

“Start talking to friends and reaching out for support to get past hard times.”

This summer I was in such a difficult place health wise that my husband, George, was having a difficult time keeping up with household tasks. A friend who lives close-by was persistent and started getting our groceries for us. I wrote about it in a post called Being Chronically Ill and Asking for Help

-Sketch or draw. Sometimes I'm quite literal in drawing the things things that are bothering me and sometimes I take a black or red crayon run and it back and forth across the page. Below is an example of some art I did about how I physically felt when I was having a difficult time.

-Reach out to others in the chronic illness community. Often I feel much better after talking with someone who has Migraines or another one of my chronic conditions because they “get it.” When you are close to the end of your rope there is no substitute for having someone validate your experience because they have lived it too.

-Though these websites are not meant to be lifelines like the National Suicide Prevention Lifeline. Below are a list of some websites where I find support. I specifically seek out the “forum” sections and join the groups pertinent to my health conditions because that is where I meet people with my conditions, ask questions, support others and am supported myself.

Health Central/MyMigraineConnection

Chronic Babe

Rest Ministries

Migraine.com

Chronic Illness Support Groups on Facebook

Do you have any ideas of what you do when you are close to the end of your rope that you'd like to share? Please post in the comment section! I would love to keep adding to this list.

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255).

For the next post in this series, go to: Experiences from the Community: Greater Appreciation

Migraine and Suicide: What To Do When You Are in Crisis (Suicidal)

2011-09-04T07:12:00.004-05:00

This week, September 4th through September 10th is the 37th Annual National Suicide Prevention Week. September also happens to be Pain Awareness Month. In honor of National Suicide Prevention Week and Pain Awareness Month, I will be continuing the series I started with the post Migraine and Suicide. Please check in every day as there will be posts with contribution from the chronic Migraine and chronic pain community on topics related to chronic Migraine/chronic pain and suicide including how to cope when you are close to the end of your rope, personal stories from those who have been there, on suicide and faith, a post especially for loved ones (family, friends, caregivers) and links to other blogs/articles on Migraine and suicide. As I mentioned in my previous post on Migraine and Suicide, my goal is to decrease the stigma of the discussion of suicide so that we might be more supportive in the chronic Migraine/chronic pain community on this issue. So let's get talking.

If you, or someone you know, is in suicidal crisis or emotional distress please call the National Suicide Prevention Lifeline 1-800-273-TALK (8255). Click on this link to the National Suicide Prevention Lifeline’s website where you will find information on why you should call, who should call, who and where you are calling, what will happen when you call, and how you can call. It even gives numbers for TTY users for those who are deaf.

“Anyone who feels sad, hopeless, or suicidal; family and friends who are concerned about a loved one; anyone interested in mental health treatment and service referrals” should call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255). I have called this crisis hotline for a friend before and the people I spoke with were very kind, non-judgmental, understanding and helpful people. They talk to people who are suicidal or having suicidal thoughts every day, so if you feel you need to call, please do so right now. They are there to help.

In preparation for this series, I reached out to the chronic Migraine and chronic pain community for input. I will be sharing with you a combination of their thoughts and my own.

The overwhelming consensus of the community is that when you are in crisis (feeling suicidal, at the end of your rope, depressed), find someone who you trust and contact that person. If you feel there is no one to call, please refer to the above section and call the lifeline.

One community member expressed beautifully what I think many of us feel at one point or another about our suicidal thoughts:

When I'm at the end of my rope, I feel defeated and ashamed. I hate feeling like I've let the chronic pain "win." I feel ashamed for even have a fleeting thought of ending things.

But, do not let such feelings keep you from reaching out. Remind yourself that having suicidal thoughts can be common among chronic Migraine and chronic pain sufferers. When you have them, it is vital to reach out to someone. Find a trusted person and start talking and keep talking. Keep talking until someone hears you. One member said, “My best friend is my ears and shoulders most days.” When you call the hotline or your trusted person, be honest. One member said when she calls her trusted person, “I talk about my feelings.”

Are you feeling suicidal? Tell them. Tell your trusted person what you need. One community member suggested that you might ask someone if they could come stay with you for the day or for the night if you feel that might be helpful to get you through this difficult period. One time I had a friend ask me to call a behavioral hospital for them to ask questions for them because they didn't feel comfortable doing so at the time. Per my friend's request, I even set up an appointment for them to see a therapist that same day. You never know what is possible if you reach out. If you have a psychiatrist or a therapist, this would be a good time to reach out to him/her.

Check out the National Suicide Prevention Lifeline website. It has a lot of really helpful information for how to get help. Remember, you are not alone.1-800-273-TALK (8255)

For the next post in this series, go to: What To Do When You Are Close To The End of Your Rope.

Could Have Been Me

2011-08-30T13:45:00.000-05:00

This morning, I was about to pull into a parking spot, and I saw a yellow diamond shaped banner on a car an SUV away from the spot I had my eye on.

I forgot to breathe for a second. It really was not what the sign said that got to me. I have a few friends who are pregnant right now and even more that have babies. I'm used to managing my feelings about my loss of baby. But this "BABY ON BOARD" yellow caution sign was on a car exactly like mine. Exact make. Exact model. Exact color.

Before I had a chance to wrangle the thought, it flew out of my head: "That could have been me." *sigh* I pulled into my spot and glanced to see if the car was really real. Yep. Still there.

I drew in a big breath. No, it was not me. The sadness left as quickly as it came. I opened the car door, reached in and grabbed my camera gear. I was a woman on a mission. I have been working on a shot for a chronic pain photo contest for weeks and today was the day I needed to get the shot. The thought of the car faded into the background.

After my hour and a half long photo shoot, I was back in the parking lot opening the door of my rather dirty blue Saturn coupe. I looked up when I saw a young woman about my age and smartly dressed walking toward me. She had said, "Hey!" I saw a Bluetooth in her ear and assumed she was not talking to me, so I simply smiled and got in my car.

As I was reaching to pull my door closed, I looked to my left and saw that the young woman was the owner of the identical Saturn on the other side of the SUV between us. She had probably thought I was getting in her car.

Her car. Her life.

It could have been me.

But instead, I chose my own.

Mine is dirty and probably not what you'd chose if you were looking at it from a far.

But, I chose it. I am thankful for it. And the more I am thankful for it, the more happiness I find.

Stimulation Stamina

2011-08-29T14:24:00.000-05:00

My husband, George, and I went to two grocery stores this weekend. It was the first time I have been to one since the end of 2010. We walked through the automatic doors at Jewel, a local supermarket, and looking to my left I froze and gasped, "Look at all that produce." It was almost as though I had never seen a grocery store before that moment. I truly had forgotten how much food exists in a grocery store and what it is like to experience that.

Sound silly? My world has been the rooms of my house, my back yard, my neighborhood, and the inside of George's car on familiar paths to specific doctors. I have had occasional outings to a friend's wedding, a couple trips to the Botanic Gardens and a trip to North Carolina and Iowa earlier this year. But, my daily life is the definition of a sheltered, home-bound life. I don't run errands and until recently I barely did chores.

The next day, we trekked to Whole Foods; Sunday at noon was a very crowded time to go, but it was when it worked for us. At one point, I was so overstimulated that I could not figure out what to do next and simply stared at my list re-reading the word "yogurt". "y-o-g-u-r-t" was a safe place from all the assaultive sounds, intrusive visual objects and bustling people. So George pushed the cart with one hand and held mine with another and led me around the store. Have you every looked at how many spices are available at your local market? That aisle alone freaked me out. I wanted to stare at each one and take each one in. Why? I don't know. My brain just needed to for some reason. George and I are going on vacation soon and we both know that I need to be exposed to more stimulation so that I can handle the vacation which is why we went to these stores together, but I did not expect to be so overwhelmed.

Fortunately, my chronic illnesses have all improved somewhat making it so that we think our vacation is a possibility. I have been working hard to increase my physical stamina. Three weeks ago I started walking on the treadmill five minutes a day .5mph (the slowest it will go) and worked up to twenty minutes and 2.2mph! I am more active around the house and these things will help me to tolerate the vacation better. But, my experiences this weekend made me realize that it is not just my body's physical stamina that needs to be increased. It is my tolerance of stimulation that needs to be increased.

Isn't life with chronic illness interesting?

Taking Control of my Out-Of-Control IBS

2011-08-23T13:08:00.005-05:00

My Irritable Bowel Syndrome (IBS) has been flaring for about a month now. It is not pretty. I am used to chronic constipation, but I am currently on a see-saw of extreme constipation then extreme diarrhea. There is no in-between. And along with that is daily, almost hourly severe abdominal cramping and nausea.

In the last week, I have had so much diarrhea that my body has become moderately dehydrated a few different times. I'm still recovering from one right now. We thought it was only dehydration, but since I push enough water to make my pee run clear, according to every hydration resource I can find, this is supposed to mean I am hydrated.

Yes, I know we're getting into the Too Much Information category here, but you're still reading. So...

I picked up my book, IBS for Dummies, by Carolyn Dean, MD, ND and L. Christine Wheeler, MA yesterday to see if I could gleam any new information. As I was chauffeured by George the hour long trip one way to my acupuncture appointment, I read aloud. We found that perhaps, I have not just been experiencing dehydration, but also malnutrition. With the rate the food I have been able to get into my system is flying out of my system, it has not spent enough time in my intestines for the important nutrients like magnesium, calcium, sodium and potassium to be absorbed. Why is this a problem? Because those are the vital nutrients for cells. You don't have those nutrients, you body stops working properly.

Reading the symptoms of having the different deficiencies were eye opening to George and I as I have been having unique complaints this last month that may be explained by my lack of consuming these nutrients.

Most everyone's solution for dehydration and restoring electrolytes is "drink your preferred sports drink." When I spoke with the nurse practitioner who did my acupuncture about my situation, she said "Maybe you should drink some Gatorade."

You have to search to find places that tell you how to restore your electrolytes (magnesium/sodium/calcium/potassium) by other methods than drinking Gatorade. I told my NP that I was frustrated that the common answer was to drink a sports drink. Ick. Just thinking of drinking Gatorade makes me want to gag. I have a lot of food allergies and corn is one of them. Sports drinks have this ingredient called: High Fructose Corn Syrup. *shiver* As an aside, I found online where you can make your own rehydration solution with salt, sugar and water. Apparently they save thousands of people in Africa with this formula from dying of diarrhea.

From my searches online and reading the Dean and Wheeler book, I've discovered one can restore magnesium by eating leafy green veggies, avocado and potatoes. One can restore calcium (and probitotics) by eating yogurt and kefir. One can restore sodium in a healthy natural way by eating celery (who knew?!) And of course one can restore potassium by eating bananas. Oh and there are supplements galore, but I would not touch that without first speaking with my doctor.

In addition to restoring my electrolytes, I'm working on my IBS triggers. Up until reading the section on triggers yesterday, I had eliminated all triggers except: dairy, sugar and stress. For weeks, there have been many days I could not force myself to eat much of anything because of the extreme nausea, but I could tolerate homemade rice pudding that has cane sugar and milk. I thought I was feeding myself, but I may have been contributing to the problem. Apparently sugar (and dairy) in the system creates excess yeast which irritates the lining of the gut. The easy things will be cutting down on dairy and cutting out sugar (as I don't eat much of that anyway). Stress. Well that is another post completely, but I think the key to stress is managing it.

So, the point is that I feel empowered now that I know something to do. I have an appointment set up with my GI doctor for early September. In the meantime, I have a medication that he prescribed a while back to help with IBS bouts of cramping.

Reading up on IBS has led to other important discoveries for me. I have been experiencing unexplained tachycardia (fast heart rate) since December 2010. After seeing a cardiologist and negative test results, my primary care doctor does not have an answer when I repeatedly ask him why this tachycardia suddenly cropped up. From my reading about IBS, I found that being magnesium deficient might possibly be the culprit. I have borrowed a book from the library on magnesium deficiency and plan on reading up on it and sharing the information with my primary doctor at my next visit in late September.

Sometimes I have felt as though I have been at the mercy of my chronic conditions. Being empowered today feels so good.

Chronically Living

2011-08-21T15:50:00.003-05:00

I am participating in the Patients For a Moment blog carnival. The challenge is to wordlessly tell the story of our lives with our chronic conditions. Press play to start. (To view the images full screen, click the arrows on the bottom right. The photos get a bit blurry, but they are bigger.)

Less Bitter More Thankful

2011-08-18T16:24:00.000-05:00

Glancing over today's news headlines I saw Being Bitter Can Ruin Your Health. I clicked on the article and half-heartedly read it. Many people who have chronic illnesses that cannot be seen on tests, read an article like this and cringe. My MRI is normal, so does that mean my chronic daily headache and chronic intractable Migraines exist because I am bitter?

Oh you've been lucky if you've escaped the phrase "its all in your head" in the chronic Migraine community. So, some of us are a bit sensitive when someone suggests anything mind-related might be affecting our health.

According to this article, bitterness can contribute to health conditions, create them, and if bitterness is removed even take the created health conditions away. Do I think it is that simple for us? No. But there is a take away.

Chronic illnesses have given many of us every reason to be bitter. Chronic illness has changed our lives in some form or fashion. For me, the sum of my chronic illnesses has meant for George and me that we are not able to become parents though it was a huge dream of both of ours. We made this devastating realization and decision when my body exhibited yet another chronic illness that became disabling when we were most of the way through our adoption home study this past winter. Oh yes, that stung having that particular dream ripped from our hearts.

I have lost many dreams. Have you? I have lost the ability to work in a profession I loved. I have missed dear friend's weddings, been separated from family on holidays, and spent endless days sequestered in a house, in my bed or on a couch. I do not lead a life that resembles anything close to what most people consider an average life.

This year, my body has come up with new and creative symptoms that make my specialists shake their heads and say, "Kelly, your body is just so sensitive." After having the same trusted doctor compassionately say this on a few different occasions, I realized that my body is so sensitive that not even educated specialists know how to tame it.

Over the last several months, I have been hating my body. I mean, really hating it. I have felt like it has betrayed me. Why is it so over-sensitive? I've cursed and told my body where it can go many-a-time. And yesterday, in the midst of more body-frustration, the thought came to me that I needed a different approach: to be thankful. I needed to thank my body and not hate on it any longer.

The truth is that my body could be doing a lot worse. I'm not having severe vertigo right now, and I know how hellish that can be. Thank you, Body for no severe vertigo! I have a Migraine right now, but it is not so severe I am curled up in a ball in a dark room with the shades drawn. Thank you body. Recently, I have experienced not being able to communicate because my body was malfunctioning, but I am able to write this post. Thank you, Body.

I am going to have chronic illnesses the rest of my life. I do not want to be bitter and miserable the rest of my life and at least I have a choice about that.

Oh I like that. I have a choice.

Venting is healthy. Hating is not. I am going to try to be less bitter toward my body and more mindful about being thankful.

Just Float

2011-07-28T14:09:00.000-05:00

From the age of six until I left home for college, I had a swimming pool in my backyard and as I've always enjoyed swimming, I felt like one lucky girl. There is something about being in the water that makes me feel free.

I was just laying on my couch feeling like I'm sinking. The weight of my health issues are heavy. They all are simultaneously pitching fits: Migraines, Chronic Daily Headache, Fibromyalgia, Meniere's disease, IBS and my most recently diagnosed seizures. And as I just started yet another medication that did not agree with me, I have been pretty much weighted to whatever piece of furniture I am on with wicked dizziness, nausea and sedation. Lately, I have found a head space to get through all of these things. I release the frustration, the sadness, the anger, the helplessness and focus on what I can do: like Wearing a Turquoise Dress. Today I'm wearing a grape soda purple one!

Over the last few months, I've been slowing going through the book, Little Ways To Keep Calm and Carry On: Twenty Lessons For Managing Worry, Anxiety and Fear by Mark A. Reinecke, PH.D. I highly recommend it. There was one lesson on influence and control. It helped me see that perhaps I may not be able to control a situation, but I usually can have some sort of influence even if it is very small.

Earlier, I had a moment of panic. Today, I had to make a second preventative medication change in a week and the enormity of everything my body has been going through hit me and I panicked. When I panic, I know I'm going to drown in fear and depression. And that simply is not an option.

As I was laying here starting to panic, the thought came in to my head: "Just float."

There is a theory that people who are heavier tend to float easier. I'm feeling pretty weighed down, so this should be easy. I'm gonna relax and focus on floating (not sinking)...in my grape soda purple dress!

Wearing the Turquoise Dress

2011-07-26T18:12:00.001-05:00

I am terribly moved by the response I have gotten to my July 19th Migraine and Suicide post. So many people have been so brave in sharing their stories with me. It brings tears to my eyes to see what a beautiful caring community we have. I feel excitement because I feel such purpose and passion and cannot wait to write more. Every now and again, I pick up my laptop, write a few sentences or do some research and then have to put it down.

My limitations are keeping me from thinking straight and I must wait to work more on the posts for series for which I have so much passion. My mind is scrambled by the sedation and dizziness from a new medication, my body is fried from the constant stabbing nature of Fibromyalgia and a relentless Migraine and I am exhausted from the frequent seizing. So, instead of pushing against the limitations, I'm not going to struggle.

I was sitting up in bed this morning, trying gather the courage to spend some spoons (energy) on taking a shower, which I had not done since Thursday because it had been too painful and costly. I was about to grab for my khaki shorts off a straight backed wooden chair, but stopped. I wandered into our second bedroom and pulled a dress out of the closet.

"Why not?" I thought.

After my shower, with the spoons I had left, I spent some on Tai Chi to calm my spirit, and stretch my body. I called my dad because it his fifty-seventh birthday today and spoke with both of my parents via speaker phone for thirty-eight minutes. With only a few spoons left for the rest of the day, I have been laying on the couch coping with what my body throws at me the best way I know how. And I'm wearing my turquoise dress. The last time I wore it, I was walking on a beach in Corolla, North Carolina. Looking down at the short flowing dress, memories of relaxation and calm flood over me.

During these days, when I am so sick by any and all of my health conditions, sometimes all I can do is mark time. If you are disabled in any way, you probably know what I mean. Some days, you simply have to wait for the hours to pass while your body goes through the disease process and then while it recovers. With drive and a purpose, this is the ultimate challenge.

So today, I want to say that I chose to live...not just exist, to live. I may be marking time, but I am still living. To me, living is embracing the right now for what it is and choosing to not let it defeat me. I may not have a choice in the war inside my body, but I do have a choice about how I live.

Today I am living by wearing my turquoise dress. What is your turquoise dress today? What are you doing to live despite your circumstances?

Migraine and Suicide

2011-07-19T19:25:00.009-05:00

A private conversation with my friend, Heather, inspired both of us to speak out about Migraine and suicide. Heather wrote blog post, Migraine and Suicide II, which was a follow-up post to one she wrote a few years ago on this topic. As a result of our conversation and much thought, I have decided to do a series here on Fly With Hope about Migraine and suicide. Heather and I both realized that more needs to be talked about than is being talked about in regards to Migraine and suicide. In this series, I plan on discussing what to do when you are feeling suicidal, and ideas of what to do when you are close to the end of your rope. I also hope to share personal stories from those who have gone through attempts, and advice from sufferers for family, friends, and caregivers. And finally I hope to discuss faith and suicide.

Suicide is largely stigmatized and judged in our society, which is why I think we do not discuss it openly very often. If one talks about having suicidal thoughts or feelings, or if one actually attempts suicide, that person is looked at as “crying out for help” and often is ostracized or preached to. The general population often does not know how to connect with someone who has had these feelings and experiences. However, quite often those of us with chronic disabling conditions that involve chronic pain are brought to the point of thinking of suicide, contemplating it, making plans for it, attempting it and even completing it. We're not crazy. We're in pain. We are suffering. I would guess that at one point or another most every chronic Migrainuer/chronic pain sufferer has thought “I want to live; I just don't want to live like this.” I’ve said this to myself, to George, to my doctors, to my counselor, and to my friends.

My goal is to try to help decrease the stigma of discussion of suicide so that we can be more supportive of each other in the community on this issue. Let's face it, most of us have felt so depressed by our condition that we have thought of suicide. If you have not, you are part of the very lucky minority. For those of us who have, if we come out and say, yes, we have felt suicidal, yes we have gone through depression and despair, then those who are feeling depressed and suicidal will realize they are *not* alone! And we can form stronger bonds with each other and be there to support one another when we are depressed, in despair and perhaps even suicidal.

So, hear me say, yes, I have often been so depressed that I did not want to live anymore because living with chronic pain is so overwhelming and consuming. Yes, I have thought about how I would do it. Yes, I have thought that the world would probably be better without me. Yes, I have thought that my pain would never end and the only way to end it was by stopping my life. Yes, I have thought about completing suicide. Period. (Though not end of story.)

If you are a loved one or friend of mine, that may be difficult to read, but it is the truth. And it is the truth for many many many other people who suffer from chronic Migraine and chronic pain. This leads me to my other goal, which is to create awareness so that those who do not suffer from chronic Migraine/pain can understand just what it means to feel like we do and why we get to the point of feeling like we don't want to live anymore. I want friends and family to understand that we aren't crazy and selfish, but that in times of endless pain and despair, we feel stuck with no way out. We are tired of having this burden.

Losing hope seems to be a common thread for people who consider or have thoughts of suicide in general. We lose hope that tomorrow, or even the next moment will be better or different than the one before. We feel powerless to change what has been going on for one hour, one day, one month, one year, five years, ten years, ___ years. We feel as though there is no way out as the pain feels as though it is unending and all encompassing. Because of chronic Migraine/pain, we have lost who we were, who we want to be, our dreams, our desires and the list could continue at length. It is like being in the middle of the storm and not being able to see an end. It is as though pain has a grip on our eyelids and all we can see is its misery in front, in place and behind. I know that when I am in the middle of a bad spell, I get so depressed that I cannot see the that the storm will end and the sun will come out again.

We do not want to die. We just do not want to live the way we are living. We fight to live in so many ways: attending endless doctor visits, taking piles of medications, doing trials of complementary therapies, doing a complete change in diet, participating in support groups, having a stock pile of ice packs, making heroic efforts to exercise, finding methods of distraction, reading research and connecting on blogs. We fight to have hope. We fight to find strength in each other, in a higher power and in ourselves. But sometimes, we do not have the strength and the burden feels too heavy and we just do not want to live this way anymore. Don’t judge. Don’t judge yourself if you’ve been here. Don’t judge us if you haven’t. We don’t need lectures. We need love and support. We need to love and support each other; we need to love and take care of ourselves.

I look forward to sharing this series with you and hearing your feedback. My hope is that we will grow together and that through our discussion, we will not feel like this is an unacceptable or strange topic.

Migraine and Suicide Series is currently underway. Please check out the following posts:

What to Do When You Are In Crisis (Suicidal)

What To Do When You're Close To The End of Your Rope

Experiences from the Community: Greater Appreciation

What Are You Doing For Prevention?

Experiences from the Community: When Living Seems Too Hard

For Family, Friends & Caregivers

Experiences from the Community: I Want To Live! But I Don't Feel Like I Am!

What Does God Really Think When I Feel Suicidal

Experiences from the Community: Perspective Determines the View

Links To Other Blog Posts on Migraine & Suicide

In the meantime, a great article to read if you are feeling at the end of your rope is an article by Teri Robert, Migraines and Feeling Hopeless. If you are in a difficult place right now or just want to talk, please reach out or call a family member or friend or check out the National Suicide Prevention Hotline . Or call The National Suicide Prevention Lifeline toll-free number, 1-800-273-TALK (273-8255), which is available 24/7, can be used anywhere in the United States, and connects the caller to a certified crisis center near where the call is placed..

For those who may be concerned about my own well being after reading this article, please know that I am in a good place right now and not suicidal.

Would you like to share your story?

-Please post in the comment section. Many people read this post and would benefit from hearing that they are not alone! Please note, I will not publish comments that give detailed descriptions of suicide attempts. But feel free to discuss feelings and experiences.
-If you are a blogger and want to join in on creating awareness and support in our community by writing your own blog post on Migraine/chronic pain and Suicide, please post the link in the comment section so that I might share it! Feel free to reference this post as well!

Being Chronically Ill and Asking for Help

2011-07-15T13:52:00.003-05:00

Seven Star Farms organic plain vanilla yogurt with fresh dark sweet cherries in a bowl is what I had for breakfast. I haven't had such a fulfilling breakfast in months and months. The freshness of the cherries and the goodness of the yogurt felt so delightful to my body. There is something about eating such simple delicious food.

In May 2010, I started seeing a nutritionist and started this program called LEAP. My blood was tested individually for the 150 most common foods in the American diet to see if I was sensitive to them. I went on an extreme elimination diet and now only eat foods that my body was not sensitive to. Apparently, the foods I am sensitive to were triggering Migraines! Currently, I do not eat gluten, processed sugar, processed food period, soy, or corn among other random food items. I do not eat fast food and can only eat at a handful of restaurants which means all my food has to be homemade. When I started this food plan in 2010, I was much healthier and felt well enough to cook for every meal. Once 2011 rolled around and I was not feeling well, I resorted to George's cooking. If you know George, before he met me he had never used his oven, stove or microwave. So cooking *my* food was a challenge for him. And when things continued to get worse for me health-wise, George had so much on his plate he was unable to cook for me anymore.

We found two restaurants that have gluten free/allergen practices, which means they use separate cutting boards, utensils, parts of the kitchen to prepare food for people with allergies. So, for months we've been alternating between restaurants for our meals. And our fridge has been empty. Why? We were on survival mode. When one is on survival mode, one has a very narrow viewfinder.

A friend who lives a block and a half away from us has been asking to help for a while. Recently she emailed me and offered to grocery shop among other things. I spoke with George and we realized that we really need help. It is a difficult place to be. George and I met volunteering at a food pantry. I never really realized how difficult it was for the clients I worked with to come in for food. I knew from talking to them it was hard, but I never really understood.

When I was growing up and when I was working, I loved to be the giver. I was in the helping profession, I volunteered and it filled me up. Ever since October 2005, it has been hard not to be able to give in the way I want to give but it has more so been a humbling experience to need others' help. George sometimes holds me up on the toilet or helps dress me when I am too weak or dizzy to do so myself. He also drives me everywhere as I am unable to drive. These are a few common examples of how I depend on him in our daily life. My life requires that I look to others for help...usually George or lately his parents. It is exhausting feeling like a "needy" person. Chronic illness means you require more than the regular person does and that is difficult to accept.

Part of having so many needs that one cannot fulfill themselves makes one feel like s/he is lacking something or that something is wrong with him/her. I know this is not the case, but not being able to take care of one's own basic needs would affect anyone's self esteem. Sometimes being chronically ill makes me feel chronically needy and I hate that. I'm not sure if it is hard for me to accept help or if I'm just so tired of having to be helped or a combination of the two that has kept me from really reaching out. As humans, we were made to be in community with each other with a healthy balance of give and take. I see it every day in my chronic illness community. Even though we all often are depleted, we make an effort to reach out to each other as much as we can...especially when someone needs us for support, encouragement or just to be listened to. And they are there for us when we need support. It is a beautiful interaction.

So, why is my fridge full of fresh fruit, yummy veggies and meat ready to cook today?! All because my dear friend was persistent in asking me to let her help us and because I said yes. A lot of people say "Call me if you need anything" which is extremely thoughtful and kind, but as the person that needs help, I wonder, what exactly are they willing to do? Walk my dogs or clean my toilet? When someone is specific and persistent about how they can help and what they are willing to do to help, it really helps the person who needs the help to accept the help. It also helps if the person who needs the help, (me), let other people help her. I wish I could express to my friend how much it means that she would take care of me and George in a way we are not able to take care of ourselves right now. It is a beautiful thing. Truly, one of the bests gifts I could ever receive

Deep, Full and Reverberating

2011-07-13T20:20:00.000-05:00

I grew up dancing and the last two years of high school was in color and winter guard. So much of dance is stretching. In color/winter guard we had an exercise at the end of our warm-up routine where we would lay on our back, flex most muscles by stretching our arms and legs away from our body and then relax and simply lay there in a relaxed state.

In biofeedback, I learned how to focus on a set of muscles and relax them. You'd be surprised how much you are tensing yourself up until an electrode taped to that muscle is giving a tone that says "you're too tense" and it won't shut up unless you relax yourself enough to bring it below a certain threshold.

I had an MRA today. It is like an MRI, but looks at the blood vessels in the brain rather than the brain itself. If you've never had the pleasant experience of an MRI or MRA as I have...too many to count actually, you are missing out, my friend. In the background is a whirling machine going round and round. You lay on a moving table (like a moving sidewalk, but better!) that draws you into this huge machine. When on, it makes noises that are so loud your whole body vibrates. I could feel what part of my head or neck was being imaged by how much that part of me was resonating. They don't call it magnetic resonance imaging (MRI) or angiogram (MRA) for nothing. Per the online dictionary, resonance means "The quality in a sound of being deep, full, and reverberating" which may not be the definition when technically describing an MRI. But in an experiential definition, it fits quite nicely.

The insanely loud vibration flowing through my body felt like when you hit a very low note on the piano very hard over and over again. And I happened to be the piano key that was being hit. I was trying to imagine I was getting a deep tissue massage, just with a really angry therapist. As the resonance changed, the frequency and way it sounded also changed. At one point, it sounded like a tractor continually being started inside my head. And yes, it is so loud, you wonder why they bothered to give you ear plugs and put headphones with music. Haven't they ever heard of bone conduction!? It is laughable that you might hear even a moment of the calming music.

Unfortunately I have a Migraine today that did not respond to any abortive or rescue medication I threw at it. No, not a headache where you say "it hurts...ouch." I mean a Migraine: complete nervous system dysfunction, empty energy reserves, nausea that feels it might bubble up to vomit at any moment, the weight of a mountain crushing me, oh yeah and headache pain too. I didn't have a choice to postpone this thing as my second neurologist (yes I have two) is looking for a possible TIA or aneurysm given my current symptoms.

I took some valium so that I would at least be calm during the torture otherwise known as MRA, but it didn't kick in until two thirds of the way through. So what do you do when your body is revolting and you're being assaulted by resonance? You tense up and panic a bit. At least I did. And then I remembered those stretches we did in dance and color guard. Though I couldn't really move, I thought of each muscle in my body and paid attention to it. What was that muscle saying to me? Though the assault didn't change, I did and was able to handle it a bit better.

When the MRA stopped and I was waiting for the tech to come out from behind her window and detach the elongated ecru football mask that was keeping me to the table, in my earphones, the "Mission Impossible" theme song was playing. I didn't think that was very funny. We're going to find some answers. I believe it...mostly.

It Takes A Village

2011-07-06T15:14:00.003-05:00

My in-laws arrived last Monday June 27th and stayed until this Tuesday, July 5th. They arrived earlier than we anticipated to give George and I a hand as I have started to have seizure-like episodes the last few weeks. I did not know how behind we were in running our lives. My father-in-law went to the grocery store no less than eight times as we had barely any eatable food in the house; he mowed the lawn, made meals, did dishes, vacuumed the house, and fixed a curtain rod that was falling down. And my mother-in-law helped him in doing about ten loads of laundry. We really have needed assistance.

George and I have a hard time realizing when we are sinking. I think we both know that we are struggling for air, but we are in such survival mode that neither of us thinks to call for a life raft. All we can think to do is to tread water and keep going.

George and I joined a couples small group from our church almost a year ago. When we first attended, I was doing so much better. Since then, my health declined and I have only attended a handful (maybe four) sessions. George has tended a few without me. Because of chronic illness, I rarely get to spend time with people and people I newly meet usually shy away from me because they don't really understand my life. But not this group. This group has overwhelmed me by showing love to someone they barely know. And the best part for me is that they realize that George needs support too and when he comes alone to group, they are supportive of him which makes me so happy.

I am in the middle of finishing thank-you cards that I started two months ago for when people supported us in many ways as I was recovering from my Endolymphatic Sac Decompression Surgery in April. Friends and one family member, my brother's wife, made meals for me for two weeks straight which is no easy task as it is difficult to cook to my meal plan. A long time church friend who had just given birth about a month or so earlier made me a meal! One of my friends from Purdue, who now lives in Seattle, asked her mom if she would make a meal for me because her mom lives within 30 minutes of my house. Her mom, who I had only met once in person, cooked several meals for me! And a friend I know only from the internet who also has chronic Migraines sent me homemade allergen-free brownies from Seattle, Washington!!!! I was overwhelmed with love.

The other people who cooked meals for me for two weeks? Every couple in my couple's small group made a meal (or several). These were not family or even people who knew me very well, but people who have kind and thoughtful hearts. They reached out to support George and I when we desperately needed it.

One of my mom's high school friends and another internet migraine friend sent stuffed animals. My paternal uncle sent a movie, other friends I know in real life and who I know solely from my internet Migraine support group sent cards (one friend mailed one each day of my recovery), others sent notes through my CarePage, a handful of people texted George to tell me they were thinking of and praying for me, a close friend of mine texted me every single day of my recovery, my parents sent love in tangible ways through flowers and gifts, my sister in law phoned and my parents-in-law stayed for a week during my surgery doing all of the household tasks that needed to be done.

It is so hard to ask for help because it feels like we are in constant need of help lately. But every time someone has reached out their hand or heart to support us, we have felt so loved! I thank God daily for those people who care enough to care for us when we don't have the resources (time, energy, health, emotional stamina) to take care of ourselves.

Content in Every Situation

2011-06-16T16:21:00.001-05:00

I was sitting on a blue leather couch with George in the darkened living room of a close friend couple of ours who are like family to us. I had shared through tears that I had been experiencing extreme uncontrollable anxiety lately that had been overwhelming. I was a bit embarrassed at what I was describing, but the truth was the truth and I needed our dear friends to know what we’d been going through.

Looking at my lap, I listened as George’s best guy friend validated my situation. He knew what to say. He described all the ick I’ve been going through over the last many months and iterated that he knew I go through more suffering than even he would know I go through. Talking to my friends, I felt like I had been wrapped in a warm blanket of validation, something we all need as chronic illness sufferers but don’t often get. Actually, my friends helped me to start to grasp onto why I was having day after day anxiety attacks.

Daniel Hurley, M.D., a physiatrist, which is a doctor of physical medicine who works with chronic pain patients helping them to restore their quality of life, wrote a book called Facing Pain, Finding Hope. A few years ago, I found his book randomly when searching Amazon.com for books on pain and hope and when the book arrived on my doorstep to my surprise I realized I had just bought a book that had been written by a doctor I was currently seeing! Dr. Hurley was my physiatrist from 2007-2009.

In his book Dr. Hurley wrote, “Even as we acknowledge the power of positive thinking and presence of true grace, our human spirit can endure only so much before it is beaten down from its long-suffering.”

Beaten down. Yes. That is how I feel. I saw my therapist, counselor, psycho-analyst, life coach whatever you want to call her just days after I shared about my terrible anxiety with our friends. I told her how I’m completely unable to function. This physical transformation of anxiety takes over my spirit and my body and I react accordingly. She mentioned the word trauma. Trauma is a strong word. But if we apply her word to my experience, I have being going through so many “traumas” over the last eight or so months, my spirit could not endure anymore.

It sounds weak, doesn’t it? And you know what, it is weak. I am weak. Weak is okay. I think strength is a word that is so overrated in our culture. Strength implies we can do it on our own. But, we cannot do it on our own. I don’t know about you, but I need people around me to lift me up, to validate my experience and encourage me. I also need God. God is not looking for the strong people who can do it on their own. He is looking for the weak, which just so happens to be all of us.

I read a devotional recently which had a verse at the top that said “I have learned the secret of being content in any and every situation.” Philippians 4:12 “REALLY!?” I wrote next to the verse on the page in big block letters. That’s a pretty incredible thing to say. And as Paul, the writer of Philippians, had gone through much suffering in his life and was in jail when he wrote this verse, I was curious what this secret was. The devotional did not give me a satisfactory answer, so I went to the Bible to read what Paul wrote after claiming something so inconceivable. Philippians 4:13 says “I can do all this through Christ who gives me strength.”

Click click click. My brain began turning and I pondered this for a long while. Paul was not saying Christ makes me stronger so I’ll be happier. He’s saying, in any situation, even when I’m beaten down, I can be content because Christ gives me strength. Thankfully, I do not have to have the strength, because honestly if that was the solution, I’d throw the Bible across the room. (Yep, I’ve done that in the past). But there is someone who I can rely on to hold me up with strength when I need it: Christ.

This week I have taken a daily sabbatical during the majority of the day by disconnecting from the computer, television and phone. I’ve sat in a brown cushioned chair with beech veneer armrests, and told God through journaling how beaten down I am. I have been spelling it out. Every detail. Every item.

Content? Well, as I'm pretty fickle, that depends on the hour you catch me, but when I'm deep in my journaling and reading my nine books from Maya Angelou (who I call Mama Maya) to Henri Nouwen to a book called, Keep Calm and Carry On to an application commentary on 2 Corinthians, even when I'm crying, I'd answer, yes, I'm content. I don't gotta worry about being strong cause Christ is being strong for me.

I'll leave you with a quote from Mama Maya from a her book I'm reading called Letter to My Daughter.

The ship of my life may or may not be sailing on calm and amiable seas. The challenging days of my existence may or may not be bright and promising. Stormy or sunny days, glorious or lonely nights, I maintain an attitude of gratitude. If I insist on being pessimistic, there is always tomorrow. Today I am blessed.

Baby Blue Sleeper with White Clouds

2011-05-14T13:57:00.000-05:00

I worked all last summer to reduce the amount of stuff we had in the house. I threw so much away as both George and I are "savers." My motivation was that we were going to be parents soon and needed to make room for baby. Now there is room for baby, but baby is not here and may never ever be here. Sometimes, I walk into what was going to be the nursery and is now a sitting room, and slide open the mirrored closet door. On the top wooden rack next to my wedding gown hangs a single outfit for a 0-9 month old. A blue sleeper with white clouds in animal shapes and an applique that reads "I love mommy." My mom bought this for me last summer during an outing we took while she was going through chemotherapy treatments for stage 3 colon cancer. The bright light in our lives at that scary time was talking about the adoption process that George and I were starting.

Dealing with extreme exhaustion from the chemo, we'd lay on Mom's bed and I'd float baby names. Mom loved talking about anything baby especially baby names. I loved the look on my dad's face when we told him that the tradition in George's family is to have the male child's middle names be the first name of both grandfather's. My dad said, well, I guess Grandpa's name will be used twice (my brother was named after my dad's dad). And I said, "Dad, no, you are gonna be the grandpa." The realization of "woah" was written all over his face. Classic. A happy memory.

George and I read many books and researched adoption. My health was better than it ever had been and we simply expected that it would continue. My days of disability were over. We prayed and made sure that our hearts were aligned. We felt that even if my Migraines relapsed, we had a plan of how to take care of a child.

I was prepared for Migraines, but I wasn't prepared for another chronic illness. I started to have vertigo that was mild at first and eventually became disabling along with right ear pain, tinnitus, hearing loss and "drop attacks". Diagnosis: Meniere's disease. At first, I blew off the symptoms and tried to pretend they were not affecting my life as much as they were. Several ER visits later and finally being unable to function, I could not ignore reality. Unfortunately my Migraine preventative also started to give out and I was disabled by both Migraines and Meniere's. Oddly enough, the Meniere's was worse.

George and I had gone through months of classes, tests & interviews, written 10 page autobiographies, gotten CPR certified, spent thousands of dollars and were almost finished with our home study process. But, it was not to be. My body said no and we had to listen.

We made the painful decision to stop the adoption process in mid-January. The grief is unimaginable. So many women deal with infertility and miscarriages.. And I believe there are many of us women who experience loss of being able to be a parent due to chronic illness. We got our chronic illnesses young enough that we did not have children yet and so the chronic illness factors in to our decision making in becoming a parent.

I always wanted to parent. I loved working with children as a speech language pathologist and have a special connection with them. Right now, not being able to parent hurts my heart so much that it almost takes my breath away. Presently, it is so incredibly hard for me to see others have that joy. All of my high school friends have children, just had a baby or are pregnant. I probably know five people who are currently pregnant that are my age. I am thrilled for them. But, it is awfully hard for me as I was supposed to be "pregnant" too. Right now, George and I were supposed to be on a waiting list for a child.

Some people have attempted to be comforting in saying "Well, you'll be an aunt someday and that will bring you joy." To me, that is like if I were single and they said to me, "Well, your sister is getting married, so that will bring you some happiness." Well of course, but not the same as if I were going to be the one in the marriage. Nothing is a substitute. Some say: "You are young and have plenty of time." Well, not really, as George is 8 years older than me. As he approaches a certain age, he will not want children anymore. And regardless of all these things, my grief is now. Can we just acknowledge that please? That I'm sad now?!

My grief over this is not just for myself, but for my parents and George's parent's. My mom wants grandchildren so badly. I used to tell people she wanted me to have a baby yesterday. And I know it has been difficult for her. My parents would be fabulous grandparents. I wish I could bring some joy into their lives in the form of a grandchild as the cancer really wrecked havoc. George's parents are ten years older than mine and I feel so much pressure on my shoulders. They would be great grandparents too and if I have children I want them to know their paternal grandparents as well, but time is ticking. I feel incredibly guilty that I (my chronic illnesses) am the reason that no grandchildren exist.

I shut the closet door. The baby blue sleeper with white clouds represents my hope that I will be a parent someday. We are going to paint the sitting room green. Green for change and growth and investing in a life together whether or not we are able to parent.

Preparing For Battle

2011-03-25T19:25:00.000-05:00

I have an upcoming surgery: Endolymphatic Sac Decompression Surgery on this Tuesday, March 29th. We are hoping that this surgery will relieve the disabling vertigo I have been having which seems to be caused by Meniere's disease. I have many concerns. I am not looking forward to major surgery or general anesthesia. Nor am I looking forward to having a hole drilled into my head. Hasn't my head been through enough?

But, I just read a passage yesterday that encouraged me. I was reading a devotional in a book called One Year of Hope by Nancy Guthrie. She shared Ephesians 6:10-18. It is a passage that discusses how we are to put on God's armor to protect us in battle. As my surgery has been approaching, I have been faced with so much uncertainty and great anxiety. Even though I have asked many questions of my neuro-otologist, spoken with a dear fellow blogger, Wendy, who has shared with me her experience with the surgery, researched it on the internet and actually watched a video of the surgery, I still feel very unprepared. I do not feel I know what to expect after the surgery happens. Will I be one of the people who recovers quickly and with little pain? Or will I be one of the ones whose pain goes on for weeks and recovery is slow? How will my Migraines react? Will I go into rebound because of the pain killers I'm taking for the surgery pain? I don't know.

But, reading Ephesians reminded me how to prepare for a battle. And, with my anxiety, I need a plan of how to prepare for the uncertainty and unknown of what happens Tuesday and beyond. So, here I will paraphrase the passage by writing how I will be preparing myself to face the unknown.

-Stand your ground.
-Put on the sturdy belt of truth
-Put on the body armor of God's righteousness
-Put on the peace that comes from the Good News
-Use faith as a shield
-Put on the helmet of salvation
-Take the sword of the Spirit (the word of God)
-Pray at all times.

What does this mean for me? I will lean on the strength of God to get me through. When I am scared, have doubts or concerns, I will remind myself of God's truth that he loves me. I will tap into God's peace as I struggle through. I will hold firmly to my faith. I will read the bible and my devotionals to keep me close to him and his thoughts. And I will pray at all times to get me through.

Another Severe Medication Reaction

2011-03-16T18:22:00.000-05:00

My body has always been quite sensitive to medication. Over the years, my psychiatrist, Dr K., has always chuckled at the dose of anxiety medication I take because it is so tiny that almost no one would be helped, but me.

I wrote about my horrifying reaction this weekend to a medication Dr. R prescribed to attempt to help my vertigo. At the same visit, we had agreed to increase the dose of my Migraine preventative, Gabitril. I was on Gabitril in 2009 for ten months, in 2010 for eleven months, and so for in 2011 for six weeks. With each trial, I had side effects in the beginning that were quite mild, but went away quickly. When I started on Gabitril agin this February, I did not have any side effects. So, on Friday at my appointment with Dr. R., we decided to increase the dose to one that is just a smidge higher than a dose I had been on for about four weeks at the end of my last trial in December 2010/January 2011.

I weaned myself up to the new Gabitril dose within a few days. Yesterday after my morning dose, I started to have symptoms that reminded me of how I feel during a Meniere's attack. I was having severe vertigo, and so I assumed that I was in fact having a Meniere's attack. But, as the day went on, the medication that helps resolve my vertigo was not helping at all. Because in my mind, I was experiencing a Meniere's attack, George and I focused on how we could best manage it. We were both concerned that the medication I take for Meniere's was not helping, but by the time he got home from work, I was okay enough that he was able to get me from the bed to the living room in a wheelchair. Until he came home, I had been unable to get up for food or even the bathroom.

This morning, I woke up feeling just horrid. I thought I was still experiencing severe vertigo from the Meniere's and treated it as I would when I have a Meneire's attack. But as the morning went on, it became clear that this was not just a Meniere's attack. I was having other symptoms that were scary. Again, I was unable to walk and I was severely uncoordinated. Before he had left for work, George had put a clean set of clothes next to my bed as I had been wearing the same set of clothes the last few days. It took me about 45 minutes to put on my clothes. My body would not listen to what I was telling it to do. I could not will my arms to go where I wanted them to go, so I was overshooting my target (i.e socks, shirt, feet, ect.). I knew I had laid a white ankle sock on my orange panted lap, but I could not figure out how to find it, see it or grasp it. My hands were tingly, partially numb and partially painful. I could not focus on the task at hand. My vision was bad. I had bad vertigo which was making the world spin counterclockwise, but everything was blurry and no matter how hard I tried to concentrate on an object, I could not "see" it.

My cognition was horribly off. I could not figure out how to call George. It took me a while to figure out where the phone was and what I was to do with it. And when I was eventually able to call him, I found I was unable to make any sense when I spoke. He had to interpret my words. I kept crying because I knew what I wanted to say but I was completely unable to say it. I would say words that were unformed or distantly related or just jargon that made no sense. As a speech language pathologist, I have a new appreciation for what some of the clients I worked with must have gone through.

It was a terrifying situation because I could not be in control. I couldn't think straight enough to even have my mind in control. As my cognition was poor, it took me a while to even consider that the increase in Gabitril was the reason for all of my symptoms. And once I had the thought, communicating it to George was a problem. He eventually figured out what I was trying to say and he called Dr. R immediately. But before he called, I made him promise to take me to the ER if I did not improve or if I did not answer the phone. George said he felt strongly it was the Gabitril as all of my symptoms were possible side effects. However, he told me if there was any doubt in Dr. R's mind of whether or not it was the Gabitril, he would come home and immediately take me to the ER. But, Dr. R agreed it was the Gabitril causing the symptoms I was having and I will be taking a much lower dose from now on. As I started to show signs of improvement, we figured it probably was the Gabitril and I did not need to go to the ER.

Thank goodness Gabitril has a relatively short half-life as I am better ten hours later. Of course better is a relative word. when I walked to the kitchen to finally get something to eat an hour ago, I ran into wall several times and spilled my apple juice in the middle of the floor because I was having to remind myself to keep holding the cup and I forgot. I also attempted to put the half gallon milk jug in the cabinet with the glasses a few times before I realized what I was doing and that it did not go there. My hands are still tingly and I am not able to type with the speed and agility that I usually can. I can focus better and read the computer screen, though I'm taking frequent breaks because as I'm still dizzy, it is an extra effort to focus on the scrren. Obviously, as you can see, I can now put words together. I'm still getting words mixed up, but as I revise and edit my posts obsessively, you won't find any evidence of that here.

Am I worn out? Yes. Am I stressed? Yes. Am I completely tired of everything that my body is being put through? Yes. Do I feel broken down emotionally? Yes. Do I feel depressed because I am stuck in my bed in my room alone by necessity? Yes. Do I feel anxiety that things get so completely out of control? Yes. Do I feel horrible that my even-keeled husband is so stressed that he has been crying every day the last several days because of his concern, sadness, and worry for me? Yes.

BUT... I have hope that things will improve. I have faith that God is with me and is using these situations to draw me closer to him. I do not have strength on my own, but I know who to go to to find it. I have someone to hold me physically in George, but spiritually in God. God isn't just this supernatural mystical being that I'm blindly following in hopes that he will make me better or heal me. Sure, I hope I get better, but I am not clinging to him because of that hope. I am clinging to God because he loves me unconditionally and promises to love me no matter what happens to me. He very real to me, especially in these times when I am confined to bed, cannot move and cannot speak. He's inside of me comforting me and giving me what it takes to persevere. I have fight in me that I will not let go of. I will keep fighting because I know that God's plan for me is greater than me.

So, yeah, this has been a really crappy time. But, storms do not last forever and I know the sun will come out soon.

Phone Call Follow-Up From My Headache/Migraine Specialist

2011-03-14T18:41:00.000-05:00

This morning, George called Dr. R. Usually what happens when we call Dr. R's office is that the nurse or receptionist who answers the phone takes very detailed notes. We are usually detailed in our messages and we can tell they are writing everything we say down because there are long pauses and questions of clarification.

Let me go on a tangent here and say just how much I love and appreciate Dr. R's staff. One staff member has been there for nineteen years. After nineteen years, she knows a lot about headache/Migraine and the same is true for the rest of his staff. When many Migraineur's experience frustration simply with their neurologist not being up to date on the topic of Migraine and headache, it is refreshing to encounter a staff who are educated and have great compassion. As I have seen his staff almost every month since December 2009, I have gotten close with them. They are some of the most caring people I know. They remember what is going on with me from visit to visit without looking at my chart. Every visit, they ask about my mom who went through and survived a battle with stage 3 colon cancer last year. I receive random phone calls from them where they are calling just to check in with me, find out how I'm adjusting to new medications, or just to see how I'm feeling. I get told to call if I ever need anything. I appreciate that they are different than any other doctor's office I have encountered. But, I digress.

Usually when George or I call Dr. R's office, they take the message, speak with Dr. R and the nurse/receptionist calls George or I back to let us know Dr. R's response. George called this morning because I was very sedated from medications I've been taking to manage the side effects. When Dr. R got the message, he called George back himself. He clarified that I had that terrible reaction to just a quarter of the pill. George confirmed this was the case. Dr. R basically said that he will avoid any medication of that class in the future.

George mentioned that I had not had good experience with other medications in this class of drugs. George said Dr. R acknowledged that he was aware of this information, but was genuinely surprised I had such a horrid reaction, as the medication I took on Saturday is much milder than other medications of that class, and that I was starting at a mere one tenth of the regular starting dose. George said he could tell that Dr. R genuinely concerned and cared that I had such a reaction. Dr. R even said he was "sorry about that".

Maybe it is because I'm emotionally labile from everything I have gone through the last several days, but it made me cry to know that Dr. R cared so much to personally speak with George, to get more details and to express his concern for me. I would expect most any doctor to be concerned, but I am moved that he that he apologized for his part in prescribing a drug that had such horrible affects.

Currently, I am still having quite a bit of medication-induced anxiety from this drug, some difficulty concentrating and milder confusion. My body also must be quite worn out as I'm sleeping a lot and kind of "out-of-it". In my last post, I mentioned this medication's half-life is 96 hours. However, I was mistaken: it will take 75 hours for half of the medication to get out of my system. Although, for people who have difficulty metabolizing the drug it can take up to 144 hours for half the medication to get out of their system. I'm rooting for the smaller number! :) If you are not familiar with half-lives of medications, even for people with a normal metabolism, this drug has a long half life compared to most medication half-lives and it certainly has a longer half-life than any in its pharmaceutical class. To compare to other medications you may be familiar with, the half-life of Topamax, a common Migraine preventative, is 21 hours. The half-life of Gabitril (my current Migraine preventative) is 7-9 hours. I am staying positive and hopeful that I won't be dealing with any bothersome side effects much longer!

Cervical Facet Blocks Overview: One Patient's Experience

2011-03-14T11:45:00.001-05:00

The statistics of my blog show that by far the most viewed blog posts are ones I've written on cervical facet blocks apparently because people's Google searches are bringing them to my blog. So, I thought I'd write an overview post where you find all the information I have written on Cervical Facet Blocks in one place. Please follow me through my journey that started two and a half years ago.

I have had Migraines since October 2005, but I started having neck pain in March 2008. In my post on Wednesday, September 17, 2008 Cervical Facet Blocks: Undercover Investigative Report, I described how my first set of blocks went, explaining every detail of the procedure. I described exactly what cervical facet blocks are and provided some helpful diagrams. So if you are looking for a good description, please see that post. I was sedated for my procedure, but I know of many people who are not sedated.

In my post on Thursday, October 16, 2008 Update: Cervical Facet Blocks I gave a five week follow-up report. The pain from the injections had lasted seven days and I only had a few weeks of relief. I discussed how my physiatrist had mentioned that Migraines and neck pain could affect each other. He said that I may have a continual battle with my neck because my neck is holding up my head, the source of my Migraines. Supporting a hurting head can cause neck tension and pain. This is something important to remember as my story continues.

In my post on Tuesday, March 24, 2009 March 2009 Update on Cervical Facet Blocks, Nerve Blocks and Botox, I described how in the weeks following my December 2008 injections, I had about a month of relief with my neck pain but also decreased frequency of Migraines and decreased intensity of my chronic daily headache pain. However the relief did not last through my menstrual cycle which triggers nasty Migraines. I had another set of injections at the end of January 2009 and the decreased pain lasted through March 2009.

In April 2009, I scheduled another set of injections for June 2009, but I kept postponing them and then finally canceled them. The receptionist asked why I would not be rescheduling and I said, "Because I feel better! I don't need them." In March 2009, I started a new Migraine preventative, which has brought me good Migraine management off and on since then. From March 2009 until January 2011, I did not have any occipital or neck pain. Then, when I went off of my Migraine preventative in January 2011, I started having neck pain again. I want to refer back to what my neck physiatrist mentioned at my appointment in 2008. He seemed to think that neck pain and Migraines are intertwined. When my Migraines were better managed, my occipital pain/neck pain was better managed. Insightful. Maybe the key to occipital pain/neck pain relief is better Migraine management. At least that was true in my case.

My current Migraine specialist treated my neck pain with Botox injections February 7th, 2011. It has been too long since I've had the cervical facet blocks to compare which helped more. Botox has been an extremely helpful tool in treating my Migraines. As far as treating my neck pain, I would rather do Botox injections because they are much much much less painful than cervical facet blocks.

I hope this overview is helpful. If you have any questions about my experience big or small, please ask! This post is meant to be about my experience. As each experience is different, your doctor is the best person to consult about questions specific to your case.

March Headache and Migraine Disease Blog Carnival

2011-03-14T10:52:00.000-05:00

Headache and Migraine Disease Blog Carnival on Life Hacks: Tweaking Work and Life to Deal with Migraines is up HERE at No Extended Warranty.

When Medications are Dangerous: My Weekend

2011-03-13T18:11:00.006-05:00

I saw my headache specialist, Dr. R, on Friday. Since 2001, he has been given the honor of being named one of America's Top Doctors in his specialization by his peers. He does not take insurance. He is heavily involved in research in the Migraine field. With other headache specialists, I always had my guard up, always second guessed, always questioned, and always talked something to death if I was uncomfortable with it, which is what a smart patient should do as I discussed in Reading "YOU: The Smart Patient" As A Migraineur. As Dr. R is the fourth neurologist and third headache specialist I have seen, I know how different he is from the rest. He is a cut above. His manner is professional, but extremely compassionate. He is knowledgeable and always seems to have a new treatment idea up his sleeve. He educates his patients, in office, with handouts, through his website where he posts the latest research, and through his doctor's blog. I do not trust doctors as a rule, but in the year and three months I have been a patient, Dr. R has gained my trust.

At my appointment on Friday, I forgot one important thing. Dr. R may be one of the top Migraine/headache experts, but he is not the expert on me. I am. When I sat down in front of his desk on Friday with George, we engaged in conversation, and went over my typed outline point by point (which includes a summary of my symptoms, details and questions). As we talked, he recommended a medication for me to try.

Let me preface this by saying, I am extremely sensitive to medications. The road to finding that out has been a scary one. It started with my first neurologist who tried me on two medications that caused me to have panic attacks and to be suicidal. The neurologist thought I had some sort of mental illness and when I went to a psychiatrist, the psych took me off the medications and the side effects resolved. I wasn't mentally ill; my body simply could not tolerate the medications. I learned the valuable lesson that I need to do my own research and keep my own records. I even bought a Nursing Drug Handbook and now when I start a new medication, George and I read any and all possible side effects together.

Five and a half years and more than 60 medications later, I have had my share of bad reactions to medications. Going into my appointment with Dr. R on Friday, I knew all the medications and classes of medications I cannot take and why. But, for some reason, in a moment of stupidity, I forgot that I know myself better than any doctor, even one as knowledgeable as Dr. R. He suggested a medication and I felt uneasy about his plan, but because I have so much trust in him, I did not question him or speak what my gut was saying. My gut was screaming: "This is a horrible idea!" I have tried three medications in the same class of medications he recommended. And each medication gave me some sort of horrifying effect: hallucinations, panic attacks ect. But, for some reason, I did not speak up. The fact that he had prescribed an extremely tiny dose was of some comfort to me. So, Saturday morning, I woke up and took the sliver of this medication. To give you an idea of it's size, here is a photo:

Top pill is the size I took (roughly a quarter of the middle pill). Middle pill is the size of the pill I quartered (smallest dose this medication comes in). Bottom is the size of my mulit-vitamin just for size comparison.

My body revolted. To date, this was the scariest reaction I have ever had to a medication. Sure, I had milder side effects such as nausea and hot/cold flashes and more severe side effects such as, I remember when my feet started tingling; later I was unable to will my arms and legs to move. As the medication started to peak in my blood stream, the torture began. I only remember bits and pieces of what happened. So, what I am telling you is mostly from George's perspective. He says I lost touch with reality. He says I screamed most of the day: a "tortured scream." George says I was confused and kept asking where I was and who he was. My words were jumbled. I was hostile. I was yelling at and hitting him. I was threatening to kill myself and I told him I would if he left me alone. He believed me. I said someone else had taken me over. I have vague recollections of feeling like I would be present and then someone else would step in and I have black parts in my memory.

George called Dr. R's office, but they were out of the office and do not have an answering service. George has since told me that when he mentioned the ER, I got more violent. I am not surprised. I am not a fan of the ER or the doctors there, but that is for another post. George gave me medication that calmed me enough to sleep fitfully through the rest of the "peak" hours and he did not end up taking me to the ER. So, to sum it up, the sliver of this tiny green pill did not agree with my body. As the half life of this medication is 96 hours, I am still suffering the side effects but in a not as severe as yesterday. I feel like someone is inside of me, running on a treadmill. I still feel agitated. I did not sleep but a couple hours last night. I sometimes get confused. My anxiety level is through the roof.

What did I learn? Trust my gut. All the way home from our appointment on Friday, I told George how I did not want to take the medication because of my history but was willing to try it if it would help. And we both thought that the dose was so small, if I got any side effects, they would be mild or at worst case moderate. We had discussed me not starting the medication until Monday so that I could enjoy my weekend with George. However after reading the list of potential side effects, we ultimately decided it would be safer if I tried it while he was home as a precaution because of the reactions I had to the three other medications in the same class of drugs. I am so glad I did. If I had taken this medication on Monday, I can say almost for certain that I would have died at my own hand under the influence of this medication. I say this because I have black parts of my memory of when George said I was threatening to kill myself. He is shaken by this as he feels that had I taken this medication when I was alone, I may not have survived the side effects. I am sure there are people who may think I am being dramatic, but I am not. And I'm sharing this scary event so that others might learn from my experience.

The lesson here for me and for anyone who takes prescription medication is to research, read, question and trust our gut. As I described earlier, I am a good communicator with my doctors and usually very conscientious, but on Friday I failed myself. I should have asked more questions and I should have discussed more of my concerns about the reactions I had to other medications in this class. I read the black box warnings on this medication that it can increase the risk of suicidal thinking and behavior, and I'm glad we heeded that warning by having me take the medication with George present. Migraineurs tend to come in contact with many medications because the process of finding a preventative and even abortive and rescue medications is trial-and-error. We can't know how our bodies will be affected by each medication as side effects listed in nursing drug handbooks or leaflets from our pharmacies are only possible side effects. Therefore, we must not let our guard down and must be diligent when it comes to taking medications..

Please read this important article by Teri Robert on medication safety. I just re-read it, and I am glad I did. 11 Tips for Using Migraine Meds Safely

Friendships Within and Outside of the Chronic Illness Community

2011-03-10T15:55:00.005-06:00

I was reading a post, Change: Life Since Accident, by Jamie at Chronic Migraine Warrior that made me think about friendships in regards to chronic illness. She wrote that since her life-changing accident, one of the aspects of her life that significantly changed was her relationships and specifically that her relationships with her friends were "strangely absent."

I found this to be true in my experience too. At the onset of my disabling Migraine disease, there was this rush of support from both family and friends. Friends from work, friends from places I volunteered at, friends from church, and my close friends called, texted, and asked what they could do to help. My first hospital stay for Migraines in early November 2005 lasted four days. I received a multitude of cards and gifts. I was visited by my supervisor from my job, my mom, my dad, probably about eight to ten friends, and my then fiance/now husband. Then days turned into weeks, weeks into months, months into years. Five hospital stays later, I was in the hospital for two weeks in October 2009. George, my husband, was the only one to show up. As it was my sixth hospital stay, I did not need nor did I want my parents to drive all the way up from Kentucky to visit. But, I could have used a visit from a friend or local family member. Sure, people commented on my Facebook status, but really, how hard is that? I guess it is better than nothing...

Life threw me a huge curve ball when I realized that I was losing friends because of my chronic illness. I wasn't in the places I used to be that cultivated those friendships: work, volunteering, church, small group, going out and parties. Even though, I tell myself, I would not forget or leave a friend who has been suffering no matter what, I cannot expect that others would respond how I would respond. So, I have learned to lower my expectations and accept that my friends have limitations. And over the years I have learned not to blame my lack of connections on my friends. Henri Nouwen says very beautifully in Bread for the Journey,

As people who have hearts that long for perfect love, we have to forgive one another for not being able to give or receive that perfect love in our everyday lives. Our many needs constantly interfere with our desire to be there for the other unconditionally. Our love is always limited by spoken or unspoken conditions. What needs to be forgiven? We need to forgive one another for not being God!

Having disabling Migraines and Meniere's inherently presents problems in maintaining friendships. While my friends without chronic illness have other limitations that affect our friendships; my illnesses are some of mine. When my Migraines or Meniere's symptoms are severe, I am unable to interact with anyone, inclulding my husband, George. When my Migraines are more moderate, it is extremely difficult for me to have phone conversations or in-person conversations. They wear me out and I "pay" for them later with more intense pain and fatigue.

I try to step out of my shoes and into my friends shoes and realize that it is difficult for them too. They do not want to "bother" me. Many say they don't call me because they don't want to bother me with a phone call despite my reassurance that I will not answer the phone if I am not able to and I love getting voice mails. And I imagine after many unanswered phone calls, they may feel they are being ignored or are unwanted. It is complicated.

I find that friendships with others who have chronic illness are somewhat easier than having friendships with those who do not. Friendships with those who are chronically ill require patience, understanding and persistence. And when you are chronically ill, you are more prone to have those qualities in interacting with someone else who has chronic illness because you "get it." We check up on each other and we don't take offense if the other does not get back with us. I have found my friendships with others with chronic illness at times to be more authentic than my friendships with those who are not chronically ill. We usually are more honest with each other about the issues we are facing and how they affect us. We usually go into the details of how we are managing our illnesses and share helpful strategies with each other. We also tend to know what to say or not say when the other is going through a particularly difficult time.

A friend loves at all times and a brother is born for adversity. Proverbs 17:17

I have formed relationships that are as close to me as family with my friends who have chronic illnesses. I do not have any biological sisters, but I have many sisters in the chronic illness community. Adversity has draw us close together. Though these friendships bring me much satisfaction, most of these sisters live in other parts of the country. I wish I had more close friendships with people who lived near me who are not chronically ill. I have had five and a half years practice and I am still trying to figure out how to maintain friendships with those who are relatively "healthy" and lead relatively "normal" lives when I don't live a "healthy" or "normal" life.

How do you maintain your friendships with those who are not chronically ill?

I Want to Know How To Get Through This.

2011-02-26T22:47:00.000-06:00

I have been spending a lot of time thinking about Paul lately. Paul lived a hard life. He endured a lot of suffering, emptiness and pain that God did not take away. I can really identify with Paul. I feel like I am imprisoned by my illnesses and my house right now; Paul spent a lot of time in prison. I have been so tired of being in my body that I have yearned to be released from it and go on to heaven. Paul felt like that too. Paul who? Paul who wrote many of the letters in the New Testament in the Bible. Paul, the guy that was brutally killing Christians and then was blinded on the road to Damascus, saw Jesus and became a Christian. That Paul.

Paul wrote in 2 Corinthians 5:1a and2a, "We know that our body--this tent we live in on earth will be destroyed...but now we groan in this tent." I hear you Paul, I'm groaning!

My question recently about my life is not "Why?" but "How?" How do I get through all that keeps being piled on my plate? How? As I've been journaling, praying and reading, my thoughts have turned to Paul. With everything he endured, how did Paul do it? So I have been turning to the second letter he wrote to the Corinthians to hear it directly from the man himself. 2 Corinthians 4:7-10 (New Century Version)

We have troubles all around us, but we are not defeated. We do not know what to do, but we do not give up the hope of living. We are persecuted but God does not leave us. We are hurt sometimes, but we are not destroyed. We carry the death of Jesus in our own bodies so the life of Jesus can also be seen in our bodies.

How:
*We are not defeated.
*We do not give up the hope of living.
*God does not leave us.
*We are not destroyed.
*We allow the life of Jesus to be seen.

Defeat. There have been many days where chronic illness has made me feel defeated. So much has been taken away because of my Migraines and Meniere's. Many of the hopes and dreams I have had for my life have been defeated. I wonder if Paul is talking about the bigger battle here. No matter what my chronic illness takes from me, I am still me. I am here: a fighter, a survivor, a warrior with God's Spirit inside of me.

"We do not know what to do." If we were in a church where the listeners gave choral responses, I would expect to hear an "amen" from all my chronic illness sisters and brothers. How many times have I felt like I have no clue which way to turn? Too many to count. When another preventative fails, or when a treatment option does not work, I feel so frustrated with not knowing what to do. But, Paul says "we do not give up the hope of living." Hope is having faith in something we cannot see. Paul is calling me to faith in the future God has planned for me.

God does not leave us. This can be hard to remember when we feel like God is not doing anything to change our circumstances. When healing does not come, when relief does not come, I have asked "God where are you?" But he is here. Another key of how to get through: remembering God is always near.

"We are hurt sometimes but not destroyed." I have been hurt to the point of feeling as though I were destroyed. I have laid in bed in such agony that I thought nothing could be worse than what I was going through at that moment. Perhaps how I am to get through those moments is to remember that this will not last forever; it will not destroy me. Whatever I am going through may attack or even kill my body, but it will never destroy my spirit.

I feel so connected to vs 10 which says, "We carry the death of Jesus in our own bodies so the life of Jesus can also be seen in our bodies." I can only hope that in some way through my suffering, God will be glorified. It is something I pray for daily. Paul is telling us to allow Jesus to work in us and through us. When I feel God working in me, I feel fulfilled and it helps me to get through my suffering.

Thanks Paul. I needed your wisdom today.

Daily Goals Getting me Through

2011-02-24T16:37:00.000-06:00

I wrote on Sunday in my post, Chronic Illness Blues and My Plan, about what I was going to do to help my emotional/spiritual health and my physical stamina as my Migraines and especially my Meniere's attacks have kept me pretty immobile and have been draining my stamina.

I am so glad I wrote out that plan because it has helped me to strive for those things. Every day since, I have read, written in my journal, prayed and reached out to the chronic illness community. I added a book by Joni Eareckson Tada More Precious Than Silver: 366 Daily Devotional Readings that I also read from. Reading from different books has daily brought me out of my funk. I've written in my journal even on days I did not think I had anything to say and I have been surprised at the emotion that has poured itself onto the page! I have a lot going on inside that I was not acknowledging. I started contributing to MyMigraineConnection Forum again after a nine month break. I also joined another chronic illness community Chronic Babe and have already had some great discussions with women with a variety of illnesses. One thing I want to do more of is devote more time to praying. I say sentence prayers here and there, but I have not been giving it the actual time and space that I used to. As Dr. Paul Brand wrote in his book, The Gift of Pain,

Prayer helps me cope with pain by moving my mental focus away from a fixation on my body's complaints. As I pray, nourishing the life of the spirit, my tension level goes down and my consciousness of pain tends to recede.

As far as my physical stamina goes, I re-started Gentle Tai Chi. I know this routine so well that I could do it in my sleep. Actually in the summer, I go outside and do it in my back yard as I find it especially relaxing with the warmth of the sun shining down on me. On Monday, I did part of the routine seated. On Tuesday, I did part of the routine standing. And yesterday and today, I completed the full routine standing! I've also managed to fold some laundry. Small things that are huge victories! I cannot wait to get on the treadmill, but before that happens I have to work on getting up and down the stairs.

At first, when I wrote the blog about my chronic illness blues, I was only going to vent and not create a plan. But as I wrote, I realized I needed a plan and writing it out helped to keep me motivated. Having a plan has given me structure and goals to get through my day, and this has actually helped my emotional health even more.

Dependence on Our Caregivers: How do you cope?

2011-02-23T22:13:00.000-06:00

I cannot remember the last shower I took where George was not in the room to make sure I was safe. The severe vertigo episodes from the Meniere's has made it so I often lose my balance and I get drop attacks. So, having George nearby during a shower is a safety issue. When we remodeled our bathroom in 2008, we had a permanent classy handicap bar installed, though George miscalculated the height and it is several inches too low. So, we have placed removable grab bars that I can use to steady myself, but they would not hold my weight if I were to grab them while falling. Additionally, a couple years ago, while spending a couple of weeks caring for me, my in law's bought me a shower chair so that when I am weak I can sit. But, now I must have George present to help not only because of my extreme weakness but also because a few weeks ago, George came home from work to find me on the floor after I had tried to take a shower by myself and had fallen from a Meniere's attack.

George is in the midst of his busy season. He is only home awake two hours a day, six days a week. When he gets home, he is mainly caring for me. I have a lot of guilt related to this because I know he would just like to plop down on the couch and relax but he loves me and wants to take care of me. I have had family, friends and my counselor all tell me to drop the guilt and I am attempting to, but if you would step into my shoes you find it is not so easy. I see George's care-worn face on a daily basis. So, because of my sadness and frustration at my limitations and necessary dependence on him, I often go without some basics. This is embarrassing, but true: I usually go four to five days or more between showers. I'm not really doing anything to get dirty, but still, we all feel better when we're clean.

So, today I was stubborn. I honestly can't remember the last day I showered. I know the reason is a combination of the days blurring together and the fact that it has been a while . I did not have any vertigo, so I felt safe I would not fall from the Meniere's and midday decided to attempt taking a shower by myself. As I got out of bed and gathered my clothes I felt quite shaky and weak. I got through the shower okay, but as I was getting out, my legs were starting to give out from under me. I sat down, threw my clothes on, made it to the bed, turned on the television and immediately fell asleep. My body was so worn out that I slept for quite a long time. On days like today, taking a shower is a work-out.

I would love to hear your stories of how you have had to be dependent on others, how it has made you feel, and how you have coped emotionally. I know that I am not alone, but it would be a great comfort to hear others' stories.

SootheAway Continuous Thermal Therapy Device: A Migraineur's Review

2011-02-22T14:24:00.002-06:00

I was not really looking to add to my Migraine toolbox when I found SootheAway in an advertisement on a Migraine.com I searched for and read Teri Robert's review. All things considered, the SootheAway device seemed worth trying, but since it was expensive I discussed it with George. In the end, we thought it would be a good investment especially if it helped me even just a little. I ordered the SootheAway device from their website (which comes with one free pad of your choice: mine was the front/side head pad). I also ordered the rear (occipital) pad and the car power charger. I placed my order online the evening of February 17th; I paid standard shipping, and FedEx got it to me during the day Saturday, February 19th! Incredible! I have only had the SootheAway for a few days but because so many people have been asking me my opinion, I have decided to share what I think thus far.

Instead of writing a review, it seemed more fitting, to do a video review. I had to upload it in two parts, so make sure you watch both parts! I have included all the information that I wish I would have known before I bought the device, so again make sure you watch both parts because I summarize my thoughts at the end of the second video. Please let me know if my review is helpful for you. Also, if you have any questions, please ask away!

Part One:

Part Two:

As is it is probably apparent after watching both videos, I had a pretty severe Migraine which I had treated with Frova, both of which were making it incredibly difficult for me to think clearly. I probably would win an award for the number of interjections (um/er/uh) that I said. I hope that it did not interfere too much with my ability to convey what I wanted to say. I guess my Migraine made this a true Migraineur's review.

Chronic Illness Blues & My Plan

2011-02-20T20:05:00.002-06:00

It has been a couple weeks now that my Meniere's attacks have been keeping me bed bound. Thankfully today was my first day in weeks without vertigo (*knock on wood*). However an hour ago, I got the intermittent hearing loss and tinnitus, which often means vertigo is just around the corner.

Here is a typical day in my life these last couple weeks : I wake up in the middle of the night/early morning with severe vertigo. Vertigo makes it impossible for me to sleep/walk/see/concentrate/focus/think. I take a full dose of the acute medication to knock out the vertigo. It also knocks me out and I am sedated for six plus hours. Around late-morning/midday, I fight through the medication, grabbing for the television remote on my nightstand in order to hopefully wake myself up with some tv. Sometimes the vertigo has calmed down enough that I am able to get dressed and lay on top of the bed but under the quilt that some Amish women made especially for me.. Sometimes the vertigo is so severe I am not coordinated enough yet and I'm stuck in my pajamas, under the covers for the majority of the day until I am steady enough to stand up and get dressed, not just throw myself to the bathroom and back. My body is so fatigued. On these bad days, I am trapped in my sky blue bedroom. The four walls are like a cell. I can almost feel the cold chains around my body weighing me down.

On a better day, after the morning debacle of waking up with severe vertigo, taking medication and then fighting myself awake, the vertigo comes in mild to moderate waves throughout the day. On those days, I load up my rolling walker with books/iPad/computer/medication/water/a stuffed panda bear/neck pillow and make my way to the leather couch in the living room. My two faithful followers, Knightley and Zoe nest in on either side of me.

You read that correctly, I have to use a walker right now. My stamina went downhill so fast that my legs frequently give out from under me. As you can imagine, this is quite humiliating. I do all I can to keep up my strength, but some days it simply is not possible to do any more than I am. The Meniere's makes it extremely difficult, not to mention the constant severe Migraines.

So as anyone who would be in my situation, I have the blues. Actually, I'm depressed and fighting anxiety. I had George move the dirty laundry into the other room because I was so sad that I am unable to do something as simple as laundry. Being so extremely limited can take a toll on one's emotions. So I have committed to fight back. I have created a plan to get me through this rough spot until the limitations are lessened. My plan is twofold: Do things to support my emotional/spiritual health and do things to support my physical stamina.

Plan for my Emotional & Spiritual Health:
-Read daily. I am committing to read from one or more of the following: Bible, One Year Book of Hope by Nancy Guthrie, Mosaic Moments: Devotionals for the Chronically Ill by Lisa Copen, and A Place of Healing by Joni Eareckson Tada (for which I'm anxiously waiting to arrive in the mail).
-For distraction, I have toyed with the idea of getting a fiction book, The Outlanders, on the Kindle app of my iPad, but that will come down the road when focusing on a computer screen isn't such a struggle.
-Journal daily. Even if it is simply copying a passage or verse that is meaningful to me, I commit to writing once a day. Hopefully though, I will spend more time actually writing about my emotions. As I am a verbal processor, I know writing will help me process through my emotions about my situation.
-Reach out to Chronic Illness Community daily. Whether this be by writing blogs, reading blogs, participating weekly Migraine Chat, and/or participating in forums, staying connected will help me stay grounded.
-Pray daily. Keeping a close relationship with God is vital to getting through each day and that means talking to him must be a daily priority.
-I have many other ideas, but I think this will be a good start.

Plan for my Physical Stamina:
-George is in the midst of his busy season at work where he is gone from 6:30am-7:30/8pm and sometimes later six days a week. So, taking care of myself is good for keeping up my stamina. It may seem simple, but walking to the kitchen to get my meals and letting out the dogs will help my stamina.
-I love doing Tai Chi, but unfortunately I am not yet strong enough to stand in one place for fifiteen minutes, but I am trying to do it in increments. I plan on starting it seated and then will work up to doing it standing. Eventually I hope to make it back to the treadmill. Of course, my vertigo has to cooperate, but this is my plan.
-I plan on stretching. I can do simple stretches, even from bed, that will keep me flexible.

So I'm going to keep taking things one day at a time. I'm gong to try to not get overwhelmed by the things I can't do (i.e. laundry). I'm going to focus on what I can to to help improve my situation.

My Plans: Parenting; God's Repsonse: No

2011-02-19T16:48:00.000-06:00

I have been trying to get through my "update" blog posts (What Happened to me in 2010?, Change Change Change and Another Chronic Illness? Really?) so that I could start getting to the nitty gritty of what I want to write about. Today I want to write about something that I think most young women of child-bearing age think about: having children.

Growing up, what I wanted to be was a mother. I went to four years of undergraduate and two years of graduate school to become a speech language pathologist (SLP), but oddly enough even as I was working my butt off in school, I never saw myself as an SLP. I saw myself as a stay at home mom. Being an SLP was my back-up plan if you can imagine. I was an SLP serving three to five year-olds with varied disabilities for almost three years. Then Migraines entered my life and I was quickly unable to work at all.

Over these past years of disability, George and I had many discussions about having a family. He always said, "If it happens great. If not great." I must say George is the most easy-going, contented man I know. Of course my mind was set on having a family. As the years went on, we had many discussions over whether or not we should have a biological child or adopt a child. We have so many genetic issues in both of our families: Migraines, Crohn's disease, Parkinson's, Depression, Arthritis, Anxiety, Multiple Sclerosis, Cancer, ect. As genetically a biological child of mine would have a 50% chance of developing Migraine disease, it makes one wonder whether or not I'd want to bring a child into this world that may suffer just as much as I have. Ultimately though, we realized that we have so much knowledge and resources in regards to our genetic histories that we would be prepared to deal with them. And actually, with any child, biological or adopted, there will always be the potential for chronic health issues. However pretty early on in our marriage we decided against trying for biological children because we felt that the toll it would take on my body would be too much. I would have to stop almost all my prescription medications and this simply is not an option.

Fast forward to July 2010 when George and I realized that I had turned a corner Migraine-wise. I was functioning more like a "normal" person and though I was still very much affected by Migraines, they were much better managed and we both felt that we were in a place to start exploring starting a family through adoption. We read books and we researched adoption agencies. We met with an adoption counselor at the beginning of September 2010 and officially started the home study process. We attended classes; we completed piles and piles of paperwork; we had background checks completed; we had family and friends fill out extensive reference forms; we completed ten page autobiographies; we went through several interviews. We had decided that we were going to adopt domestically and since there is a need, we decided we would adopt from the African American community. We attended a support group of families who had adopted transracially so that we could learn more about what our family would be like. We started to research baby items and did some renovations to our house that we had not planned to do for years down the road. Our dreams to start a family were becoming reality!

We knew that one of my Migraine triggers is not getting enough sleep, so having a newborn, George and I had made plans how we would manage. I would be a stay at home mom and if I had a bad Migraine day or week, we had child care lined up. With Migraines, we knew what to expect. If my preventative decided to quit, we knew it would be a struggle but we were willing to face it and work through it. We knew that we would have challenges that parents without chronic illness wouldn't have. However, we were committed to working through whatever my Migraine disease would bring.

But we were not prepared for Meniere's disease. My vertigo had started as we were working through our adoption home study process. In the beginning my neurologist had told me that the vertigo would be self-limiting so I was not concerned that it would affect my ability to become a parent. In December 2010 when my Migraines and Meniere's disease went from bad to worse, I got this horrid feeling in my gut that proceeding with the adoption process was not a good idea, but I could not accept it at the time. In early January 2011, we went to another adoption class as part of our home study. I remember taking rescue medications for my Migraine and medications for my vertigo just to get through the four hour class. I was miserable. Over the next couple weeks, the voice inside me saying that we should not pursue starting a family got louder and louder. George and I had a painful conversation where we both pushed through the denial and realized that starting a family is not for us...not know and most likely not ever. We agreed that if we would ever start the adoption process again it would be after having at least two years of my health being reliably manageable.

When we decided not to proceed with starting a family, I was unable to process the emotion. But now, the grief has hit me with a sledge hammer. As I am trying to come to acceptance of the chronic and disabling grip that not only Migraines but now Meniere's has on my life, I am having to accept that perhaps I am not going to be a mom after all. I love George dearly and I know that my life with him will be full of joy, laughter and fulfillment. But, I am sad beyond words that I will most likely not have the experience of parenting my own child.

Someone said to me, "You are still young. You have time." I am thirty-one; George will be forty next year. Yes. We have time. But, I'm not sure that it is about "time" per se. I feel that this is about what God's plan for my life is to be and I am starting to feel quite strongly that being a parent is not part of his plan for us. In my wildest dreams, I would never have expected I would ever say that! I feel I have so much love to give! Why wouldn't God want me to be a parent? But I have to stop clinging to what I want and let go to what God wants.

Over the years, I have read and re-read a book called The One Year Book of Hope by Nancy Guthrie. The book is divided into fifty-two sections on different topics such as "Joy," "Storms," "Sufferers," "Why?" "Who am I?" ect. Each topic has five one-page passages on something related to the topic. I recently read a section called "Looking to the Cross." This time around, I had committed to reading the book straight through and that day I certainly did not want to read about the cross; I wanted something comforting. So, I got to the devotional entitled "The Cross Calls Me to Humble Obedience" on pg 141. Ms. Guthrie wrote:

Do you think Jesus has called you to a job or role of service that's "beneath you" and an utter waste of your talents? Do you think you deserve better? Look at Jesus and see how he let go of the rights of deity to willingly become a slave... When you hear the call of Jesus to die to yourself, does it seem too much to ask? Look at the Cross. See the depths to which Jesus sank in obedience to his Father and the lengths to which he went to love. Then make your choice to follow him.

Oh did this passage strike a cord. Do I think that my life right now is an utter waste of my talents? HECK YES! I was meant to be with kids. I was meant to work with kids. I was meant to be with people. I was meant to be a mom. Yet, I am in a silent house all alone left with not much to do but read and pray. Do I think I deserve better than a life struggling through chronic illness? OF COURSE! I am really having to learn what it means to die to myself and to my desires. I must surrender to God my desires to become a parent because I know that is the only way I will be truly fulfilled. If I cannot let go of my desire to become a mother then I will never feel happy with what I do have in my life. Jeremiah 29:11 from the Bible says, "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." I have to trust in that. And this is where I am.

Take Action for Continued Funding for Migraine Research!

2011-02-18T19:43:00.000-06:00

I may be too late in sending this post. Today the House of Representatives was supposed to be debating whether or not to make significant funding cuts to the NIH. This would severely impact those of us who would benefit from the continued research for Migraine disease.

I don't know if it is too late or not, but please go to the Alliance for Headache Disorders website to take immediate action. There is a letter that has been pre-written with a place for you to write a personal message if you so wish. It is extremely easy to fill out the form. Even though it is already the end of the day, it is never to late to express our desire to keep funding for Migraine research.

Another Chronic Illness? Really?

2011-02-18T18:47:00.000-06:00

I believe it is common for those of us who have chronic illness to have more than one we are battling. Though Migraine disease has been the major chronic illness I have faced, I also have other health issues including IBS, anxiety, environmental and food allergies, tachycardia, fibromyalgia and a history of asthma. But in the last few months I have been diagnosed with another chronic illness and it has completely turned my life upside down.

In August 2010, I started having symptoms that were not usual for me, but not alarming. I was more fatigued than normal and quite dizzy. As a rule, I have a low blood pressure and if I am not well hydrated, I can get these symptoms, so I attributed them to lack of hydration. However, by September, the symptoms became more severe. I would be woken up in the middle of the night with symptoms that made me think I was dying.

As an aside here, I loathe the emergency room. After years of trips to the ER, I feel that the doctors know much less about my body than I do and I simply do not trust them. So, I fought my husband when he wanted me to go. I wanted to push through and wait it out. Finally at 4am, my condition had deteriorated so badly that he was unable to get me to the car and had to call an ambulance. Later, we found out I was suffering from vertigo and learned from a health professional that it is one of the most common reasons people go to the ER because it can be so severe they think they are dying. So, I was not alone nor was I being dramatic.

I started out seeing an ear nose and throat doctor who was convinced my vertigo was related to my Migraines. Since I was not experiencing Migraines at the time, it did not make sense to me. However, my ENT insisted that my Migraine specialist be brought into the conversation. Dr. Robbins, my Migraine specialist, sent me to a physical therapist for vestibular rehabilitation to help treat the vertigo. However, I was discharged after my second visit because the PT felt my case of vertigo was "special" and that I would not benefit from the therapy.

I had also started to develop symptoms in addition to the vertigo. I noticed that I would have intermittent hearing loss in my right ear. It felt as though I was hearing underwater. I felt fullness in my ear and had ear pain. Later I started to get ringing (tinnitus) in that ear as well. And then I started falling down. I have since learned these are called "drop attacks". It is nothing like passing out, which I have had my fair share of. I am conscious, and fall straight to the ground. It is almost as though my body has forgotten where it is in space. I have my fair share of bumps and bruises, but thankfully have only hit my head once.

After an MRI, audiological examinations and other tests to rule out certain forms of vertigo, my ENT began discussing Meniere's disease. Like Migraine, Meniere's does not show up on a test or a scan; it is something that is diagnosed over time mainly based on one's symptoms. And I have all of the symptoms.The National Institute of Deafness and Other Communication Disorders (NIDCD) has a wonderful information on Meniere's Disease. Meniere's is a disease of the inner ear that eventually takes one's hearing. Usually Meniere's is unilateral (in one ear), so when I showed up at an appointment with my ENT saying that I was noticing intermittent hearing loss, and ringing in my other ear as well, she became quite alarmed. She expressed that having bilateral Meniere's disease is an extremely disabling condition and felt as though I needed to see a specialist, a neuro-otologist to determine what is going on.

I saw the neuro-otologist, Dr. W, late January 2011 and I really like him. When we discussed my Migraines, he actually got on a soap box saying that not all Migraine specialists are good eggs. It was so exciting to hear a physician know that and actually advocate for his patients to get the best care for their Migraines! Anyhow, after taking an extremely detailed history, Dr. W discussed how Migraine Associated Vertigo and Meniere's disease are on a spectrum. In the beginning, my symptoms seemed to be more Migraine related even though they occurred in the absence of Migraine, but given my current symptoms, he believes that I probably do have Meniere's. He said he wants to hold off judgment on whether I do in fact have Meniere's in my left ear, but he feels that I most likely have it in my right ear.

The unfortunate part of this chronic illness is that there are not any good treatments out there for Meniere's or really for vertigo. I have an acute medication, diazepam, to take for my vertigo, which helps, but unfortunately sedates me for 6+ hours. I have tried oral steroid, prednisone, with no success. On February 8, 2011, I had an outpatient procedure called intratympanic steroid injections. Dr. W injected steroid through my ear drum in hopes that this would help my Meniere's symptoms, and more specifically my vertigo. Unfortunately, this painful procedure has not help me at all. According to research, the percentage of people who are helped by this procedure is low, but as there is no risk of damage to the ear, it is a procedure worth trying. The next level up would be to inject an antibiotic, gentamicin, into my ear, but that has a high risk of taking my hearing. Currently, I only experience intermittent hearing loss and my base-line hearing is quite excellent. So, if we decided to take this step, it would be quite a risk.

Unfortunately my Meniere's symptoms have become disabling. When vertigo hits me, I am unable to walk, focus, concentrate, or see straight. And of course the episodes of falling down are quite scary. The thought of having Meniere's the rest of my life and not knowing how disabling it will become is frightening. I am just coming to terms with what having Meniere's, another potentially disabling chronic illness, means in my life. I guess it all comes back to the word I wrote about in my last post, acceptance. I am not there yet. Actually, acceptance in regards to the Meniere's disease seems far away. There is so much I don't know about Meniere's and therefore I have a lot of fear. So, I need to educate myself more and next on my list is to seek out others who have Meniere's disease. As I have found the community of Migraineurs has helped me along my path, I hope that meeting others with Meniere's will help me on my path to acceptance.

Change Change Change

2011-02-17T18:58:00.000-06:00

As I mentioned in my last post What Happened to Me in 2010?, for 8 months in 2010, I had incredible improvement in the frequency and severity of my Migraines and additionally the daily headache I had had since October 2005 had ceased. Unfortunately all that has changed.

From October to mid-November 2010, I had a 3 week spell without one Migraine! This had been the longest I had gone without a Migraine since they started in 2005. So, when I got my menstrual Migraines mid-November, I expected that once they were over, I would be Migraine-free again. But that ended up not being the case. Triggers that had not bothered me for months were triggering Migraines almost daily. At first I thought it was just a fluke. But come early December, when I was not improving. I called my headache specialist, Dr. Robbins, and he increased the dosage of my Migraine preventative, Gabitril. A week later after no improvement, he had me come into the office for a round of Botox and further increased my Gabitril dosage. Gabitril had quit on me in 2009 after 5 months of moderate improvement and Dr. Robbins had warned me that this may be happening again. Despite the Botox and the significant increase in my Gabitril dosage, I did not see any improvement. My Migraines quickly became constant and severe.

When I saw Dr. Robbins mid-January 2011, we tried another round of Botox. However, we discontinued the Gabitril. The plan was that after a few weeks break, my body would "forget" the medication and I would be able to retry it with the same results. At my February 7th appointment, I received more Botox and we decided to restart the Gabitril. Currently I am taking the dose that I had so much success with last year, but I have only been at this dose for a week. I have a lot of hope that I will find success with the Gabitril again. Last year when someone asked me what had caused such significant improvement, I would say that I thought it was a combination of all I was doing: medications, supplements, Botox, food changes and exercise. I still believe that all those things were important puzzle pieces in my improvement, but obviously Gabitril was the glue.
The decline of my Migraine status has been quite disheartening. However, I have been diagnosed with another chronic illness that has been wrecking just as much if not more havoc than the Migraines have. I will share about this new adventure in my next post.

From what I have experienced this last year, I want to share with you, dear readers, a valuable lesson I learned. When I had such success with my Migraines for eight months in 2010, I thought I had turned a corner and was home free. I finally had a new life with better Migraine management. My life was not Migraine free and did not resemble my life pre-disabling Migraines in the least. However, my life was finally not driven by Migraine. It was a life I had dreamed of when my Migraines were debilitating. Even though I knew it was a possibility that the Gabitril would quit again, I felt as though I had all those other things in place that would keep me from falling back to the debilitating/disabling place that I was in for so many years prior. I believed that dealing with disabling Migraines would be part of my past and never my future. The shock and grief of being here again is quite difficult. Last night, in Migraine Chat , which occurs every Wednesday at 6pm CST hosted by Diana Lee at Somebody Heal Me, the word acceptance was brought up. Before I had the eight months of improvement in 2010, I had come to a place of acceptance of the role Migraines had in my life, but now I am realizing that I have to do it all over again. I have to accept that they will be something I will always have to deal with at some level. I will never get away from them. Sometimes I will have less limitations and sometimes I will have more.. And I believe once I am finally able to accept this, I will be able to move through the grief and fully embrace what God has placed before me.

What happened to me in 2010?

2011-02-15T17:25:00.001-06:00

So much has changed in regards to my health since I was last blogging regularly in 2009. Actually, the majority of 2010 was a much better year for me Migriane-wise as I will share in this post. I was doing so well that I left most connections I had to the Migraine community in the dust. Simply speaking, I did not want to think about, talk about or read about anything Migraine related. On one hand it seems very selfish on my part that I would abandon all the avenues that had got me through the rough spots and I am sad I did. But on the other hand, it only makes sense that after years of being chained to Migraine disease, if I had the chance to have a break, that I would want to take it. So, I hope that as I re-join the community I used to be so active in that my story of success with Migraine management will encourage those of you who are wondering if it is possible for someone who is severely disabled from Migraines to ever find relief.

The end of 2009 was a nightmare. I was hospitalized for another two weeks in October 2009. After realizing he had no clue what to do next, I fired my headache specialist at Diamond Headache Clinic. A phone conversation with Migraine advocate, Teri Robert, helped me decide to travel to Dallas, TX early December 2009 where I received treatment for a week by Dr. John Claude Krusz at Anodyne Headache Clinic. Late December 2009, I started seeing a headache specialist here in Chicago-land, Dr. Lawrence Robbins at Robbins Headache Clinic.

By February 2010, thanks to Dr. Robbins, my life was starting to change. It was a slow process. At first I could not have hope for the new treatments I was doing such as Botox which I started that first appointment in December 2009. Up until that point, I had tried so many treatments that had failed that I didn't really expect much success. Dr. Robbins also decided to do a second trial with a preventative medication I'd had moderate success with in the past, Gabitril. I also started a natural Migraine preventative, Petadolex (butterbur). In March 2010, I started to take a low-dose estrogen plant based birth control pill to enable me to go 3-4 months between periods so that I could avoid the horrid menstrual Migraines as much as possible. Late May 2010, I met with a nutritionist who did an MRT blood test and created a LEAP food plan. The blood test found that I have many food sensitivities that were triggering my Migraines. I started a food plan that included a drastic elimination diet and I currently eat whole foods (mainly organic) that are unprocessed and have no preservatives. After years of being mostly homebound, it took a while, but my stamina gradually improved. By June 2010, the constant daily headache that I had had since October 26, 2005 ceased to be daily. My Migraines stopped becoming as severe and as frequent. By my standards, it was a miracle.

A new life emerged. I read back on old posts I wrote on this blog and cannot believe that every dream I had for my Migraine disease management had come true. My Migraines were still present as were my headaches, BUT they were manageable and I was a functioning individual contributing to society! I say a new life emerged because it was not like the one I had before Migraines/headaches were disabling. Migraines would/will always be a part of and affect my life, but the limitations on my body were significantly decreased. I started volunteering. I took my two year old dog, Zoe, to dog therapy training classes and we passed the test to become a therapy team. I started reading with first graders, using my speech language pathology background to help them along. I also started talking with an organizer at my church to be a part of the hospital visitation ministry. Finally, the most exciting news was that George and I had decided to start a family through adoption and we were knee deep in paperwork and classes.

My life had completely changed as the grip of chronic illness seemed to have relaxed its hold. Though I am currently not doing as well as I'll discuss in my next post, the fact that I had eight miraculous months of improvement showed me that anything is possible. I never believed that my Migraines could be so manageable and because they were for so many months, I know they can be again. Hope is never lost, even though it might seem that way.