A woman who inspires me

Hey everyone!

This past Tuesday and Wednesday, I headed down to Washington DC to try the Ketamine infusion again. The first one didn’t do much of anything. In fact, the CRPS has spread to all four limbs now. But, I was told that the 2nd treatment is more effective, I still don’t know if it’s worked yet, but I’ll let you all know!

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While I was there, I met another woman with RSD…her name happens to be Heather too! (We are just everywhere hehe) And I am extremely happy that I met her. She is truly an inspiration to me.

As we were both side by side, with ketamine getting pumped into our body… we were attempting to have somewhat serious conversations ( lol Maybe not the smartest thing to do,especially if it’s a convo with useful information..because you will not remember a thing!). It was also reassuring to know that there was someone else there, with the same syndrome, receiving the same treatment. CRPS is NOT rare! It is NOT new! Yet, no one has really heard about it, including those in the medical field. Even though it was only 5 hours a day for 2 days, I didn’t feel so alone and it was a good feeling (the Ketamine didn’t hurt either hehe)

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I am sharing all of this information for one reason, and that is to share with you Heather’s story..

I had asked her (during our ketamine adventure) if she would be open to sharing her story for this website. After logging on to this site,I realized I had a comment to approve! And this is what is said…

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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 rx you can imagine.

I received my fury three high dose ketamine infusions (700-900mg) with Dr Kirkpatrick in Tampa. I believe he is the best.

In 2011 my 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 rx into my own hands. Stop being a guanine 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 RSDS.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 flare 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 M. 

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Heather,

I am almost 100% sure your story just inspired many. Thank you for sharing your story. And I will definitely stay in touch!

Thank you all for taking time to read this post! Until next time, have a great and pain free day!

Sincerely,

Heather Lynn

Click here to go to my gofundme page!

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4 thoughts on “A woman who inspires me

  1. Heather Gilmore says:

    Hello to Both Heather’s!

    I’m glad to meet the new Heather that you met thru her story & being there during Ketamine infusions. Yes, trying to have convo is hard but it’s powerful and nice to know that you are not alone.

    I too have RSD. Very bad!!! It’s caused me to die 3 times, but I’m alive and fight daily. Yes, I joke to amputate my leg but my doctors say it’s the worst however not all cases as we know are not similar but what we do know is this: we are NOT alone.

    Please feel free to find me on Twitter, Facebook or email.

    RSD family sticks together! Lets educate!

    Stay strong & thanks for being there for Heather thru the curtain.

    Love,
    Heather
    Another RSD patient!!!

    Like

  2. shazzagirl70 says:

    Really? Are we up to 3 Heather’s now? Hee hee. Thank you Heather number 2 for sharing your story and you have made so many great points about having your family get away from the pain too. Heather-Lynn the RSD arm bands look great. And thank you again for your blog it does make a difference. Hoping today is a relatively good one for everyone…including all of the Heathers!

    Like

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