Wednesday, December 28, 2011

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

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.

Friday, December 23, 2011

Health Activist Awards from Wego Health

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 WEGO Health are be celebrating all the awesome achievements made in health leadership and patient advocacy in 2011! WEGO Health,a different kind of social media company dedicated to empowering Health Activists, has just launched the first-ever Health Activist Awards program, to recognize Health Activists (both new and established) for all of their great work over the course of the year. 

This interactive program lets everyone get involved by nominating their favorite Health Activists and sharing what has inspired them, moved them, and made a difference in the online health community.  I have nominated some of my favorite Health Activists and I hope you’ll take some time to recognize your favorites 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 Activists will win if they’re chosen.

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

Monday, December 12, 2011

December 2011 Headache and Migraine Disease Blog Carnival

Welcome to the December 2011 Headache and Migraine Disease Blog Carnival

The Headache & Migraine Disease Blog Carnival has been created to provide both headache patients and people who blog about headaches with opportunities to share ideas on topics of particular interest and importance to us.

The theme of the December carnival is "Reducing Holiday-Related Migraine Triggers: Share your best advice, tips & tricks for minimizing triggers while still fully enjoying the holiday season." Please keep reading for the submissions 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 be avoiding holiday triggers this year including something new she’s trying that is 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 shared Migainuers: 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 thoughtful ideas to keep in mind for minimizing triggers and having a happier holiday.

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

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

Jamie Valendy shared Reducing Holiday-Related Migraine Triggers posted at Chronic Migraine Warrior. In her post, Jamie discusses a list of triggers we can control and a list of triggers we cannot control. She shares tips on how to approach and 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 kit posted at teenmigraineur. Rebecka, a first time and very welcome contributor to the carnival discusses her preparation for an exchange trip to France for the holidays and what she will be including in her migraine kit she will be bringing with her. My favorite off her list of what to bring was “a cute face washer towel with a picture of tweety bird and a lamb on it” as she plans on using it to wrap an ice pack and to cheer herself when she’s not feeling well. Find out what else Rebecka plans on bringing as a part of her migraine kit.

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

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

The theme will be: "What do you resolve to do in 2012 to manage your migraine disease?"
Submissions are due by midnight (the end of the day) on Friday, January 6, 2012. The January carnival will be published by Diana Lee at Somebody Heal Me on Monday, January 9, 2012.

Sunday, December 11, 2011

Dear Fellow Bloggers: Will you Consider Disabling your CAPTCHA?

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!

Thursday, December 8, 2011

Last Call: December 2011 Headache & Migraine Blog Carnival

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 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!

Tuesday, December 6, 2011

Trigger Point Acupuncture for Fibromyalgia

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.

Thursday, December 1, 2011

Writing for my Spirit

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.

Tuesday, November 29, 2011

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

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 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-Like Symptoms

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 might 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 possible OCD. I am certainly overwhelmed by the symptoms and do not wish to have what seem to be 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-like symptoms 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 would be 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-like symptoms?
Through using the bio-behavioral therapy techniques-four step treatment program in Brain Lock, I am learning how to start to manage my symptoms. 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-like symptoms 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 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 OCD-like symptoms. 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-like symptoms.  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!

Tuesday, November 22, 2011

Stand Up: AHDA Action Alert

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.

Sunday, November 20, 2011

Coping With a New Diagnosis: PFAM Carnival

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.

Tuesday, November 15, 2011

Dum Geit!

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?
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 know what "dum geit" means, eh?
Do I look like a foreigner?
If you were, you would know that "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!

Tuesday, November 8, 2011

Birthday: Number 32

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.

Saturday, November 5, 2011

Five Things That Changed my life

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.

Friday, November 4, 2011

Coping with the Funk

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 " 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

Thursday, November 3, 2011

Dear 18 Year Old Kelly,

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,

P.S. Keep Dancing!

Ballroom Dancing Competion 1998
-This post was written as part of NHBPM – 30 health posts in 30 days:

Wednesday, November 2, 2011

Candle of Hope

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: I rebelled and did not use today's prompt.

Tuesday, November 1, 2011

NHBPM- Potential Titles of My Future Book

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:

Wednesday, October 26, 2011

2190 Days of Headache; 2201 Days of Sweetness

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.

 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.

Tuesday, October 25, 2011


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.