Thursday, September 30, 2010

Celebrating 10 Years Since My Darkest Hour

September 2000 was a major month in my life.  It revolves around something I rarely talk about, and I think in big part it's because I once felt so defined by it and never want anyone to do that to me again, because I won't give it more credit than being an influence of my identity.  It's kinda long, but it's the shortest I can write it, sorry!

I have a chronic medical condition, fibromyalgia, for which the doctors thought I would never be able to be an active or very mobile individual, and in September 2000 I was in the depths of my darkest hour with the condition. I came out the other side but don't think I'm past it.  It's a condition I live with every day, it affects the choices I've made in my life, and it's a big part of why I'm obsessed with this sport of running and want to encourage so many other people to get active, because I know that if I could, others can!

A Quick Background
An overly simplified history of my illness, written as I recall it now, which may or may not be completely factually accurate, but it's the best retelling I have:
  • Age 13 - Occasional serious back pain is ignored by doctors as simply "growing pains"
  • Age 16 - Pain has become more chronic.  I'm put on heavy daily doses of Advil by a doctor who never should have done that.
  • Age 17 - I've resorted to sleeping on the cement floor in a sleeping bag in my college dorm room because the mattress seems to be only making my pain worse.  A doctor takes me off the Advil, puts me on a painkiller that gives me intense "real-like" nightmares.
  • Age 18 - Rounds of physical therapy are becoming routine life for me.  I've begun taking painkillers, anti-inflammatories, and muscle relaxers regularly to continue to function normally, all while getting great grades in college and holding a professional corporate internship in the actuarial field.  I feel a little crazy as the pain worsens in different parts of my back at different times with still no diagnosis.
  • Age 19 - I jump from specialist to specialist.  I've not had an agreed-upon diagnosis, just agreed-upon extreme measures.  While the pain is mostly in my back, I have generalized muscle pain and occasional phantom pains in other parts of my body.  Words like "disc disintegration", "lumbar facet syndrome", "osteoarthritis" are thrown around but often seem to be filler words for what the doctors can't figure out.  We try out different drugs, and I'm getting occasional cortisone shots.  The pain is strongly affecting what I can do - can't stand for long, can't sit for long, spending more time in bed, etc.  At that point, doctors are beginning of throw around the idea it could be "fibromyalgia" which unfortunately is not easily diagnosable (its a condition identified by a collection of symptoms so you can't just test for it in a blood test or something like that) or curable.  Some days I'm still not comfortable with the term because I'm a quantifier and don't like using a term for something the medical community itself finds so unquantifiable.  These doctors' negative thoughts send me into a downward spiral as I lose hope.  I'm told I need to consider having surgery to fuse the worst vertebraes affected together.  But that this normally leads to an additional 14 surgeries over time as the other vertebraes end up needing to get fused also.  I'm told I will never run and will very possibly not be able to walk past age 35 if this continues to progress and conditions continue to deteriorate. 
  • Age 20 - I'm frustrated by the only options being high dose painkillers or surgery and a specialist sends me to a "pain management clinic".  I'm excited until I'm confronted with the reality that their only ideas of pain management for me, on top of what we've already done, is cortisone injections straight into the bone routinely - very painful itself.  I refuse.   
The Month of September 2000
This brings me to September 2000. In the few months before this, I've turned 20, finished my Bachelor's degree in Mathematics with an emphasis in Statistics, gotten married, moved into our first apartment together, and begun a full-time job as an actuary.

My work is getting frustrated with the off-and-on sick days depending on my pain level and send me off for a one-month disability leave to see if we can make me better.  I'm hooked up to a portable neuro-stimulus unit a few times a day and feeling awfully bedridden.

I feel helpless, hopeless, and fearful. I spend hours on the phone arguing with and fighting through paperwork with my medical insurance and disability insurance company because that's the way the system works. I recall looking back that I cried a lot.

During this time, I start doing yoga and Pilates, which the doctors would have hated if I told them because of the impact on my bones and muscles.  Pilates helps me feel like I'm getting stronger - which shouldn't be possible according to the doomsday docs.  I start managing my stress level in my life better, getting more sleep, canceling all the doctor appointments, and finally - going off all the drugs. 

September 2000 was a game changer for me.  It was the month that I saw the bottom, hated it, and decided that life was not a life I wanted.

It's really the month that I feel like I took back my life.  Since then, I struggle some days. I wake up every single day in some level of pain and choose to live life and not let the world see the physical pain on my face.  I've carefully worked towards getting more active, sometimes with baby steps since it's a muscular condition and can flare up from time to time. We think the fibromyalgia was what made pregnancy more painful for me - the stretching of the muscles during the 9 month transformation was not something my body looked kindly on.  My world is influenced by the condition I was dealt, but I still make the decisions, not the medical condition.

Quite a Journey
I have defied all the doctors' odds, have not seen a doctor for the condition since September 2000, and am in the best shape of my life.  My first half marathon was walked with a finish time of about 3:35.  I've completed 20 half marathons in 5 years, even after a running injury in late 2005 that took a year to fully recover from and a hard pregnancy with my daughter in 2007.  I'm obsessed with encouraging others to get active, because I wish someone had been that little voice for me.  So I have volunteered a lot in the running world and spent hours coordinating running events just to see the smiles of first-timers crossing the finish line.  My husband, family, and friends have to endure hours of me strategizing my training, my racing, and my running.  My husband is the best window into my soul for all this obsession - it helps show me how justified it is.  He takes all this obsession in and listens and helps and lets me vent and watches me spend hours on the computer planning a race for others to enjoy.  And I know it's because he had to watch firsthand what I went through.  He took care of me in that darkest hour, and it made us stronger together for having been through it.

Ten years... it's been quite a journey.  I can't wait to see where the next 10 years leads.

9 comments:

  1. Makes me admire you that much more. You have a powerful story.

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  2. thanks for sharing this - makes me that much more in awe of you for all that you have taken on. And it goes to show that anyone can be active & work on being healthy and strong, no matter what obstacles they have in front of them! kudos, Libby!

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  3. Libby, I must say this choked me up a bit. Having a couple chronic illnesses myself (one being hypothyroidism, which actually mimics fibro symptoms), I've gone through the frustration and pain involved with not knowing what's wrong, and not knowing how to solve the problem.

    I'm glad you were able to take it into your own hands when no one seemed to be able to help. Now I understand why you do what you do...because you can!

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  4. Thanks for sharing Libby. You are amazing. Keep up the good work.

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  5. Wow. Thanks for sharing. You're awesome.

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  6. Another wonderful blog Libby! Thanks for sharing!

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  7. You are an inspiration. ;) I bet there will be a lot more half marathons in your future, lady!!

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  8. You are amazing!! Truly an inspiration. Keep on keepin' on Libby..you rock!

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