Best day of the week! Caturday! This post always gives me some smiles 🙂
Smiling immediately helps your mood. And keeping your mind off your pain is important. So hey..check out these cool cats 🙂
On thechive.com every Saturday!
❤ Heather Lynn
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Life as a CRPS fighter 
Hi Heather! I know we only met (& most if it through a curtain and ketamine) but your web site has touched me. I enjoy the mixture of personal stories and education. I often thought if “sharing my story” in efforts to increase awareness and help others. However; never did. I can rationalize it in many ways. Laziness? Probably. Timing? Most defiantly. As I explained to you at GW, RSD took five years of my life (& my leg). Still pretty angry and refuse to let it define who I am. Therefore, I don’t spend time blogging. However, I do owe it to so many who are suffering to share what I have learned in hopes of helping just one. So… Here I am!
I was dx with RSD 5 years ago after falling off a school bus. I broke my hip. Not sure if it was the fall or the surgery that triggered the RSD. I have tried over 70 medications. Done spinal blocks, sympathetic blocks, radio frequency ablation, spinal stimulator, pain pumps, PT, OT, Reikie, and just about every other tx you can imagine. I recieved my fury three high dose ketamine infusions (700-900mg) with Dr Kirkpatrick in Tampa. I believe he is the best. In 2011my body completely shut down. Unfortunately I was driving at the time. Flipped my car. It was then I decided that I needed to take my tx into my own hands. Stop being a guinnie pig for doctors to “try one more thing” on. I elected to have my right leg amputated. Against the advice of so many, fearing I would go full-body after the surgery, and clinging to the fact that it really was my only chance to be a “mom”, wife, daughter, and friend again… It was the only clear choice. My leg was rotting off my body. I was too weak to fight the RSD and the infection developing in my leg. It had gone too far and needed to die. I’d like to say that I was able to kill the snake by cutting off the head but, I can not. The amputation did not cure me but it did give me the fighting chance I needed. I am NOT suggesting anyone go out and cut off a limb because of RSD. That is not my message. Thanks to sites like yours Heather, & foundations like RSD.org (& many others) education and early detection has proven successful. For me, it was too late to save the leg but….. I’m alive and currently pain free (5 months now). My RSD still triggers. Use to be about every three months. A bee sting, a kite hitting me in the face, routine cavity fill, silly things have triggered and flair up in the past two years. I am very lucky in that the ketamine works for me. It literally dries up the blisters & open sores during the first few hours of infusion. It truly is amazing to watch.
Anyway, my message to you and all of your readers…. In short: you CAN live with RSD. Early detection is key. Be aggressive in your fight for tx. Don’t become all consumed with it, there is a life you chose to lead. Don’t let your family become all consumed with your disease. They need to have a break from the pain too. Support and Educate but find the fight to LIVE. I am currently in remission. Once my head clears from my most recent ketamine infusion, I will strap on my prosthetic, hit the gym and yes, even return to ice skating ( my passion)!! My life is DIFFERENT with RSD. Heck, it’s DIFFERENT with one leg but… I chose to LIVE and it’s MY LIFE (not my illness) that I want my kids to remember!!
Thanks for the inspiration Heather. I hope this helps (even one)!! Stay in touch!
Heather Myers
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Hey Heather!!! I hope you were able to see the post that I ended up making with this amazing comment that you left! It’s under “a woman who inspires me” 🙂
I’ve tried emailing you!! I wanted to talk to you about the doctors you go to. Especially the dentist! But I just realized that I sent it to the wrong person 😦 Oopsies! Lol.
I’ll try that again! 🙂
Thank you so much for sharing your story. ❤
Love, Heather Lynn
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