About

Gutsy Girl

Gutsy Girl

This is the story of my journey with CRPS.  Though I now know that I’ve had CRPS for the past 10+ years since my reconstructive surgeries to both legs, it’s only recently been diagnosed as such.  While I’m grateful to have a name for the burning and pain, I’m also sad to see that there is no cure at this time.  I hope that by sharing my story, those who love someone who has chronic pain (whether it’s CRPS or another disorder) will come to understand the experience more fully from the patient’s point of view and see how much we appreciate their care.  For those who are in the fire directly (whether Survivors or those who love a Survivor), I hope you will join me in the firefight and not lose heart.

I also write at http://www.naturallygutsy.com about surviving multiple gastrointestinal disorders and doing so with a smile.  🙂  I believe that God will give me the strength to continue living and smiling through the pain for His glory and my ultimate good. I’m not alone, and neither are you.

Welcome, and thanks for reading.

Gutsy Girl (Sarah M. Bosse)

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Comments
  1. Sarah Bosse says:

    I was afraid to count how long I’ve had RSD. I believe 13 years is about right if I remember my surgery date correctly. I had surgery on both legs to correct worsening birth defects from cerebral palsy, but nobody recognized the RSD in the first leg that they “fixed” and so I then had the 2nd surgery and guess what? RSD there too.

    I wasn’t diagnosed with RSD until Feb of 2013. True. Since I never knew it was RSD, all I knew was my bones were breaking a lot (nearly 30 fractures in those 13 years followed by a number of times that I thought I’d fractured and it was the RSD bone-breaking pain instead) so I was often casted, in-and-out of my wheelchair or using forearm crutches. On Dec 2, 2012, the beast flared to a proportion I’d never experienced before and I knew that “idiopathic peripheral neuropathy” didn’t answer any of my questions nor satisfy the “why?” and “what do I do about this?!”. The surgeries I had to prevent me from becoming crippled for life ended up crippling me in stages and now in a worse way.

    I’ve not had any sight of remission since 2012, just “atomic flare avoidance”. I now have a Spinal Cord Stimulator, implanted December 14th and revised on March 15th of 2014.

    The RSD spread to my right arm in 2013 because I was exercising. I had just received the diagnosis and knew that being inactive could make it worse, so I decided I would carefully exercise myself back to fitness (allowed by my doctor). Instead, a combo of exercising a little too much plus being on a medication that caused the most massive flare I’ve had to date (ER). It also traveled to my bladder and sigmoid colon. I’d already had it in my SI joints and lower back from a car accident in 2007, however, and in this area I’ve had some remission with times when it flares, but I now consider my lower back to be the tamest RSD area I own except for my right arm.

    I’ve mostly been in remission with my right arm except for flares when I type or do anything too much with my hands, and the bladder and colon are iffy at best, always riding the edge. No more remission for my legs, however. And no more treatments are available.

    I’m now learning to use my SCS to help with the pain. For some types of pain it works wonderfully well (such as allodynia)! For others, it does little to nothing (like the burning pain). Otherwise, my “worst” symptoms tend to fluctuate every few weeks or so, like the bubbles in a lava lamp that rise as others fall, juggling around in there.

    I pray one day there will be a cure for CRPS / RSD!

  2. Patricia says:

    love the lava lamp . prefect description.

    u truly r not alone and i don’t mean me, but Our Lord & Savior. Only way i am surviving . Thanks for sharing ur blog w me.

  3. Michael says:

    Hey Gutsy, Hello from your future…. I feel your pain in so many ways…….. and can totally understand what it is like to grow up with a rare disease. You see, I just turned 56 years old, and have been fighting Juvenile Onset Parkinson’s Disease since symptoms first showed up 41 years ago when I was only 15, and a sophomore in high school. Last year, I had DBS surgery (deep brain stimulation) and thus far? I’m holding my own again……………….. So, although you can never win the fight, it can be managed…

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