Thursday, October 13, 2011

We Few Are Fighters

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

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

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

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

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

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

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

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

14 comments:

  1. Sweetie, you are strong, too. You are strong in faith and spirit. I wish we weren't part of the minuscule percent... but, we do the best we can to get through each day... each moment... I love you, dear.

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  2. Wow Kelly, I'm so happy to have found your blog. I've been looking for a few blogs to recommend to my chronic headache and migraine clients. Yours is topping the list! I love it, and I'm sure my clients will too.
    I'm so glad that you have the support group; what a priceless resource. I wish you all the best!

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  3. Amen! Great post. Makes me feel less alone.

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  4. Jamie,
    I opened my email this morning and imagine my surprise to wake up and find I had comments on a blog that I did not publish. I had drafted this post last night during a horrific Migraine when I was *really* down emotionally. Tears were flowing down my cheeks as I was writing. I actually wrote a couple other posts which I'm glad to see did not accidentally get posted. I was really in a bad place emotionally.

    I do NOT remember pressing "Publish". I actually was a bit horrified because I did not remember what it said and I KNOW I did not edit it. I usually go edit my posts to death. And frankly, I don't know if I would have posted this after a day or so of thinking about it. I already see I need to link to Teri Robert's two articles.

    But as horrified as I still am that such an unfinished post got sent out, I am glad it posted. Perhaps it was meant to be this way. It was how I was feeling. And I think the feeling was that those of us who are really so sick we can barely function, often don't get the support/validation we need except from each other. And I am so glad we have each other.

    I don't mean to say that those who are more "able" are not fighters. But, in my sorrow I was wanting to say to the world and get some acknowledgement that we live a really difficult and horrific life on an hourly basis with sometimes no tangible hope to look toward (very few if any new treatments to try). Last night after a specialist appointment, I was out of hope at all. George kept telling me, "I'm holding onto it for you, Kelly". And if I decide to edit the post at all, I would change the last sentence from "they" to "we are the ones who are strong"...strong in Christ...but also strong in other ways too...strong in ways that the world and sometimes even ourselves cannot see.

    I love you too, my dear friend, lots and lots!

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  5. mdhealing,
    I'm glad you feel my blog is worth sharing! That means a lot to me.

    Support groups are so integral to surviving with chronic Migraine or any chronic illness really. I am connected to a few online ones and it really helps to have others who "get it" because they are going through it too. We usually end up connecting through text of phone calls and some people even skype!

    A couple of great websites I'd recommend as Migraine/headache resources are www.mymigraineconnection.com and www.migraine.com

    Thanks again and I look forward to connecting with you and your clients more.

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  6. Sue,

    If you read my comment to Jamie, this post was not supposed to get published, but now I am glad it did. It was raw emotion and I'm glad it helps you to feel you are less alone. That is so important with chronic illness, isn't it? To feel like someone understands. Thanks for sharing and I look forward to getting to know you better!

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  7. I am not quite to the very severely debilitated group of migraineurs, but I am dangerously close. I have been teetering on the edge of being completely refractory for quite awhile. It seems that the triptans will work on some headaches and then do absolutely nothing for others. My head hurts about 5 days a week, every week, to varying degrees. I force myself to do the things that moms do, because I have had to quit working years ago. I often feel broken and alone in this fight, because even amongst my family members (who all have migraines), I am the most ill. I was recently diagnosed with fibromyalgia and I am still coping with that diagnosis. Thanks for reminding me I am not alone in this fight and for giving me the courage to go on. :)

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  8. Oh Andrea,
    I'm so glad that you commented. My heart hurt as I read how difficult your journey is too. And coping with yet another diagnosis is really a difficult thing. Bless your heart for being a mom! I am in awe of chronic Migraineurs who are moms too. From what I can see with my friends, being a mom is a difficult and challenging job by itself (though I also understand it is rewarding)! I cannot imagine how much you must deal with physically and emotionally.

    That must be really difficult to be the most severe of your family. And it sounds like you are very severe. Sometimes people who are not as severe as us do not understand why we don't respond to treatment like they do and that can be difficult.

    I hear you about feeling broken and alone and I hope you know you are not. You sound like one courageous and strong woman to journey through what you go through.

    My email is posted on my blog homepage if you ever want to connect that way.

    Sending gentle hugs your way.

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  9. Andrea, I also found this link that I thought might be helpful for you:
    https://www.facebook.com/pages/Moms-With-Illness/194959140577037

    Apparently it is a facebook page, but it is for mom's who have chronic illness.

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  10. Thank you for sharing your strength with us. <3

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  11. Kelly, I'm glad I found your blog (through a random google search, that I found Heather's "war on headaches" and clicked through to yours). My journey parallels yours. Chronic headache/migraine, not responding to treatment, fighting it, and holding onto a hope and peace that only God will provide me. And living in a pain that only others who experience this can understand. So thank you for sharing your heart. I am glad I found your blog.

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  12. Caylyn,
    Sorry I'm so delayed in responding. I completely missed your comment! Thanks for sharing and commenting. I am going to check your blog out as soon as I can focus on the computer for longer than a few minutes at at time! I'm so sorry to hear you are on such a difficult path too. I am happy to hear we share our faith in God. I look forward to getting to know you better! Keep in touch!

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  13. Kelly,
    I too am part of the" migraine elite". While I would never wish them on anyone, there is comfort in the knowledge that I am not alone.
    I have searched for so long for someone that may be able to truly understand how I feel– physically and emotionally. While reading your posts I wept. It was like you looked into my life and my heart and wrote down the words.
    Thank you Kelly for sharing... You are making a difference! In that knowledge may you find strength and hope. You are in my prayers...

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  14. sasynrs,

    Your comment made me tear up. Thank you for letting me know that my blog has been helpful for you and that someone else understands what you are going through.

    I am so sorry that you are in these shoes too. :( And you are right, you are not alone. Connecting with people online has been so important for me. I'm so glad you reached out. This disease can be so isolating and we really needing each other.

    Thank you for the prayers and I will be asking God to bring your some comfort, hope and relief as well. Gentle hugs.

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