Thursday, December 27, 2012

Reflection Of Progress

When I started this blog I had just been through living hell. Four pancreas attacks were behind me. CFS/ME had been pinned down as a very real virus that infected my central nervous system and severely eroded the integrated systems of my body. While not "gone" (viruses don't leave) that too was treated and managed and I had resumed a quality of life previously unattainable. Meaning I could work part time and somewhat function as a contributing member of society. Fibromyalgia was not behind me, per say, but I had jumped off the merry-go-round of intense pharmaceuticals and their life altering side effects and found a better way to manage it. Everything I'd been forced to learn through my years of illness started making sense. I experienced the awesome power of the human body's ability to heal itself through the fruits of holistic principles. No, I hadn't abandoned modern medicine, but instead utilized its slim offerings in conjunction with myriad other ways to get back to livin'.

I sat down at my computer one spring day in 2010 and, having never even read one, started a blog. Figured I knew a thing or two about how to survive this monster called Fibromyalgia and thought it would be an excellent way to practice and improve upon my writing skills. I'd set my sights on starting my graduate degree in English Literature and knew I needed the practice. So I wrote. It was like a journal. Sure it was technically published on the world wide web, but if nobody knew about it how on earth were they to find it? I certainly didn't have the guts to actually tell anyone about it. However I believed the worst was behind me and it is from that point of view I focused my perspective, as a survivor. But how does one know the worst is behind them when they haven't lived the future? Because by the time summer was nearing its end I'd gone and had two strokes, severely life threatening ones I barely survived by the hair on my chinie chin chin. And that's when life went real bad. 

The first six months on high dose steroids were easy, in retrospect. I got those guts I didn't previously possess and shouted my blog from the rooftops. I became enraptured with the cause, devastated by each personal story I heard of how horrifically detrimental Fibromyalgia can be to a life. Sweeping urgency consumed me. I had to do something about this and I had to do it now! The state of affairs was in shambles, patients were terribly mistreated, a clear and absolute voice on how we were going to change things didn't seem to exist. Feverishly I blogged and started an awareness campaign and Facebook page and became full of frenzied certainty I was going to be the one to turn this very big problem on its head. And then I got off steroids and discovered I was actually a hot mess of the worst proportions. I'd gained 40 lbs. Fibromyalgia pain consumed me like when it had previously disabled me. My cognitive abilities were screwed up. I possessed absolutely no stress response and would melt into a puddle of jello if someone so much as gave me a dirty look. I couldn't problem solve or think quick in a fast situation. I couldn't even do two things at the same time, like walking and talking, for crying out loud. Like I said, it was bad.

So bad, in fact, I will assign the last two years as the worst of my life. More than a few times I didn't think I was going to survive. But through the grace of God I did. One step at a time, one day at a time, one challenge at a time. All the while I tried hard to stay true to those holistic principles which helped me reclaim health once before. It was with great challenge I attempted to maintain my voice as a Fibromyalgia survivor when my own personal walls were caving in around me. Sometimes I could and sometimes I couldn't. But if there is one certainty in life it is that time moves forward, and slowly I found my footing again. I started jogging and dropping weight. I stopped reacting to every bit of strife with epic meltdowns. I remembered how to roll stuff off my back, not freak out about what I couldn't control and put my energy into things which yielded goodness. I didn't so much wake up one day and everything was better. No, not at all. But I did pause one day not too long ago and look back to see a lot had improved. So I kept going. I reduced some medications, started keeping up the house a bit more and began counting on myself again. I took a creative writing class and got some great feedback on the novel I am penning. Checking my messages and answering the phone were no longer fear gripping activities. I wasn't burdened with the sheer weight of my own existence anymore, I was actually living my life. Not the life I lived before all these health problems took over, but one where I discovered there still is a lot to smile about.

This blog has ridden every wave of my journey with me. High and low, ecstasy and agony, good and bad, laughter and heartache, it is all here. Raw and imperfect, as I myself so certainly am. I'm not the superwoman who started The Fibromyalgia Crusade. My lofty ambitions have fallen very short. But in redefining life so it works for me I've had to reassess my commitment and discovered nothing has changed. My heart still beats to see a world where Fibromyalgia patients are not blamed for their illness, treated like it is an optional condition they are too weak to push through. My efforts still very strongly promote this cause, but are far more conservative and reflect what this one woman show can actually do. I am honored to have shared my experiences with those who have searched for ways to cope and found me. Without this blog, without you readers, without the anchor of responsibility as not the, but a voice of this illness, I don't believe I would be standing where I am today.

Thanks for joining,


  1. Leah I'm just starting this journey and came across your blog. This is the first post I have read. I will go now and read your others. Thanks for sharing your experiences.

  2. Leah, just found your blog and wanted to tell you thank you for having the courage and strength to write it! I've spent 3 days pouring over blogs from Britain and Canada (could not find much from the states) and blogs for learning disabilities, trying to find SOMEONE who may have gone through what I am going through. I was diagnosed with Arthritis when I was 4 and now I am told all this pain is Fibromyalgia. My life is a mess and I am struggling. But thank you! I have hope now I might actually get through this thing that makes me so sick but no one can see or tell me why I am so sick! Gonna go read more of your posts!

    Thanks, Joanie

  3. Leah, just found your blog and wanted to thank you for having the strength and courage to write it! I spent 3 days searching blogs, trying to find one that might help me through this struggle of a mess I now call my life! I was diagnosed with Arthritis at age 4 but recently been diagnosed as having Fibromyalgia! Another invisible illness that most people will not believe I have and tell me to "suck it up". yea right! Its nice to know you made it through this horrendous painful, exhausting ride! I am on Cymbalta ans just started on Neurotin. Thanks so much!