Joy in Prison

Until today, I had not left my house for four weeks. The psychology that goes into being bound to your bed and your bedroom is maddening. To be dependent when you are by nature driven... The term "cabin fever" hasn't applied to me since the beginning of this six and a half year long ordeal. I got used to being in my house.  But, aside from God's grace and the joy my husband's presence brings and the knowledge I have certain family and certain friends actively supporting me, my life for these last many weeks have been misery. Unless you are close friend/family and have read my Carepages, you are not aware of the severe neurological attacks I have been getting that have kept me bed bound. During these attacks:

*I cannot walk (i.e. looking down at my leg and willing it/telling it to move and it won't)
*I cannot lift my arms (feel like the force of gravity has increased)
*I have difficulties with swallowing (I'm an *SLP and I know the symptoms.)
*I have severe chest/rib pain
*I have muscle weakness/twitching/tingling/numbness in extremities
*I am confused about where I am, (Again I'm an *SLP.)
*I have difficult forming words/talking (*SLP.)
*I have difficulty concentrating and thinking (*SLP!!)
*I have blurred/double vision
*I am completely unable to regulate my body temp (shivering with layers on under several blankets or turning the bedroom fan on high even though it is 60 degrees in the house)
*I am so fatigued (beyond fatigued-forced to be unconscious) that even after a night's rest that I am UN-able to stay awake (George said I fell asleep eating with my face in my food one time), and the list goes on but items that are leading me to see a urogynecologist.(*SLP= Speech Language Pathologist-I worked with adults and children with swallowing and communication difficulties.)

I KNOW something is wrong. These attacks started in 2010, but did not last as long as this latest attack.  I saw a neurologist who specializes in MS on January 9th. And he referred me to Mayo Clinic. I've been denied twice because they do not have the resources and I've already had a lot of testing done, but the neurologist we saw did his internship & residency at Mayo and has made a personal referral as a last resort; we are waiting to hear back from that. If we do not get in... Well. I'm just gonna trust that God is taking care of that. Worrying is not going to change the outcome.

So, I have been trapped not only in my house, not only in my bed but also my body. It has been maddening. I have thought I would lose my mind at times. My anxiety, OCD and depression are all heightened because of the nature of my situation. Anyone would have these issues in my circumstances. One day when I was improved,  I called a good friend in a full-blown panic attack because I  had tried to leave my bedroom. I had been in my bedroom so long I was actually terrified to leave it even though I desperately wanted to. Thankfully she skills to know how to help me. And I made it to the living room.

Early this morning was my appointment with my headache specialist.  You would think I would be jumping for joy to leave the house. But, my anxiety was so bad I was tempted to call off the appointment.  This may have been my prison, but it is what I know, it is my world, and I know that my body does not function well with a lot of activity.

*If I take a shower, I am done for the day. No joke. Bed bound.
*If I try to work on gently increasing my stamina,  I am unable to move for 12-24 hours.
*If I walk from the bedroom to the living room, I must bring my walker so that I can get back.
*The one time I didn't bring my walker to the bathroom last week, I fell and had to wait until George got home from work because I was not strong enough to get the phone which was on the bed. For however long, I laid staring at the bottom of George's dresser, wondering how much time was passing and thinking among other things that I hate that dang dresser because it is oak.

There I said it. I hate his oak dresser. Its ugly.

But what does decor matter when you can't get your body to move?

With anxiety medication in my system, I made it to my appointment and back with my wheelchair; it was much less traumatizing than my last trip to get Botox in early January where I shook the whole appointment and George had to carry me up the stairs over his shoulder. I was so overstimlated, hypersensitive, and unable to move or communicate that he just left me with my winter coat & shoes on laying on the bed and went to work. I don't know how long it took for my body to respond to my cognitive commands.

Today, I was thrilled with how my appointment turned out; we are making positive changes in my prevention protocol. I feel the ball might be finally rolling in the right direction again. I got trigger point acupuncture and cold laser therapy for my Migraines. I got to spend extra time with George.

I was fine (relatively speaking) the hour drive home until George turned left onto our road, in which we immediately see our house and a scream that felt like it started in the pit of my stomach came out of my mouth like a roaring fire. It surprised  me as much as George. I completely lost it without knowing it was coming. One second I was talking about prescriptions. The next minute I was completely freaking out. I cried and begged him to take me anywhere but home...to his work....I'd lay on the floor of his office...he said it would be too overstimulating for me there...so I said I'd stay in the car in the parking garage...he said I needed to rest...Take me to Kentucky to my parents or to Iowa to his parents. He said he would but he couldn't- not now at least. He promised on his next day off he would drive me somewhere even if just around the block (I'm too weak by the time he gets home to even walk much less go down stairs to the car).

I screamed so loud he stopped halfway up the driveway. He didn't even open the garage door. If someone had been home in our neighborhood I'm sure they heard me.

He was bringing me back...to my cell, to my prison, to nothing, to no interaction...back to where my chronic illnesses live: the Chronic Migraines, the constant daily head pain, the OCD, the anxiety, the panic attacks, the depression so bad I wish to have someone else's cancer so they can live a full life and I could die and get away from this misery.  All these live in my body, but he was bringing me back to the place I experience them day in and day out.

He said "I understand." But he couldn't. No one can. I begged him to not make me go in.

And then he said..."But Giselle needs you." Giselle, my little 10 pound four year old rescue cavalier, that has an anxiety disorder and clings to me. I got quiet and thought, "he is right. She needs me."

I cried when he opened the door to the car and when he assisted me up the stairs (I was stubborn and determined to get up myself though that was impossible.) He brought me to the couch and my body gave out.

And then I heard it: it what the running of the bulls must sound like in Pamplona, Spain. He had gone to the room where the dog's crate is and let them out. They were trailing my scent with full speed ahead.

Giselle made it first. Her tail wagged so hard that her whole body was wagging. She licked me and rolled on me and rubbed herself into me. She was jumping for joy.

 And then Zoe plowed through to get some love and some licks.

And then my Mr. Knightley with his absent ball&socket hip joints and arthritis got up on the couch, stepped over all Giselle and Zoe and let me know he was there in the way only Knightley can.

There is always joy in prison. You just have to search, find and be thankful.

Hurt People hurt people.

Woah......

Time out.

Step back. Cool down. Take a deep breath. Now take another.

Hurting people hurt people. It is true. We often don't mean to but we still do. In October 2011, I shared about when George did something to upset me and I unleashed my hurt upon him. I encourage you to read it even if you've read it before Yesterday, I lost my temper.

If you are hurting for whatever reason:
physically
financially
emotionally
family issues
relationship issues
someone was unjustly cruel to you
you've been abused in some way 
you feel lost
you are lonely
you have been abandoned
you have been betrayed
something complicated that you can't explain
for a reason you don't know,
(fill in the blank)                ,
or all of the above combined:

First of all let me send you some compassion for enduring your hurt. Next, I think it is important when we are hurting that we remember to take a breath before we talk, phone, write, text, IM, email, tweet, message or communicate period.

We need to be aware of and take responsibility for:

our pain,
             our rage,
                          our anger,
                                       our sadness,
                                                          our frustration,
                                                                               our irritation,
                                                                                                our bitterness,
                                                                                                                       our darkness.

Our hurt.

Hurt People hurt people.

• Hurt magnifies and fogs everything at the same time. We do not see as clearly. We do not think as clearly.
• Our hurt may lead us to ramp up the defense and put us on the offense.
• Our hurt might lead us to lash out.
• Our hurt may lead us to give up and shut down.
• Our hurt makes us susceptible compare by saying "I have it better/worse off than s/he does"
• Our hurt might make us feel like yelling, "If only they knew ____!"
• Our hurt may lead us to ask "Why don't they/do they _____?" 
• Our hurt (fill in the blank)                                                                       .

Hurt People hurt people.

We are a global community, national community, health community, friendship community, family community all of hurt people.

I am a hurt person. You are a hurt person. We may not often or always feel it or show it, but we all have had hurt at some point in our lives.

Being aware and taking responsibility for our hurts is the first step in not hurting someone else. Choosing to have compassion for others is another step. Today I was hurt by a hurting person. I am betting so were some of you. (((Gentle hugs.)))

I am going to conclude this post the same way I concluded Yesterday, I lost my temper by saying,

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

I do not like writing posts that "label" people one way. My belief is that we have many facets to us and in this post I write about just one of those facets: hurt.

Project Migraine Hope-Rising Up

Project Migraine Hope has officially lifted off and even has its own Facebook page. We are working on an official logo and will share that with you as soon as it is ready.

Check out the videos that have been posted to get ideas on what to include in your post! Please be yourself. This is not a professional thing so do not think your post needs to be perfect or even close to it! We are just a group of people sharing with each other. We want you to be who you are and be real. If you have any questions or concerns, make sure to email us at projectmigrainehope AT gmail DOT com

The community needs to hear your story of how Migraines have affected your life and how you get through times of darkness and find hope.

Don't forget to "Like" the Facebook page!

Behind the Mask

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

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"

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:

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.