Amber’s CRPS Journey to Walk Again

I miss the life I had. I miss the running, the paddle boarding on open water and - most of all - I miss the spontaneous slow dances with my husband.

It turns out my whole life I’ve been walking around with a silent Chronic Disease just waiting to take over my body; think a glow stick that has finally been cracked and is now glowing and this painful debilitating glow is spreading.

On October 3rd, after a LONG day of helping friends & family with Hurricane Ian clean up, I wasn’t paying attention and tripped over Breezy, our dachshund, and rolled my left ankle. It hurt like hell, but as I’ve done in the past, on that very same ankle, I knew right away it was either a torn ligament or a REALLY bad sprain. It was nothing a good cocktail, elevation, and some ice couldn’t fix, or so I hoped.

Three days later, the situation had escalated quickly. I now can no longer bear any weight at all on it, I cannot touch it, even shower water sends me into tears from the pain, and the color…. It’s bruised, purple & blue, but now is also blotchy red and pink. The whole foot is a completely different color than my other foot and is so swollen it feels like my toes will burst. My foot & ankle are constantly ice cold and at a pain level of 6-8.

Multiple Xrays, MRIs, and tests later, I now have a team of 6 doctors and have been painfully diagnosed with CRPS, Complex Regional Pain Syndrome, a disease that attacks the nervous system.

Super fun, right? We now have a diagnosis, so let’s fix it! Well, that’s where I have seen all 6 doctors go from hopeful to the hope leave their faces and heartbreak take over. You know it’s bad, when one doctor tears up with you, as you cry hearing the diagnosis and the explanation.

Turns out, there is NO cure for CRPS.

They can throw a bunch of drugs at it, hoping something helps mitigate the pain, but there is no cure.

So here we are! I have tried multiple pain medications and am now living on a large dose Gabapetin which keeps my pain at about a 6, with occasional spikes to a 9. I have lost all use of my left leg from the knee down. I had a nerve block injection on Dec 3rd, which my body rejected, and at my follow up, I was told that my CRPS is spreading and that it’s just a matter of time until it will spread to my other leg. They are certain that I will be in a wheelchair within the next year, if left untreated.

Me! A Mom of 3 girls! Wife of the most active man in the world!! A runner!!

And now a FIGHTER!!!

I will not accept losing the use of my legs.

We have found a specialist in Arkansas, Dr. Katinka at The Spero Clinic, the only treatment center of its kind in the world, and the only one in the country that specializes in treating CRPS. They only accept a small number of patients at a time, and they have accepted me!! I will start my 14-18 week treatment at the Spero Clinic April 10th! It’s important that I start right away, because it is spreading so fast, and my chances of a full remission are better the sooner they can get it under control.

This is a pivotal moment in my life.

I’m the “caretaker”, I’m the “fundraiser”, I’m not the one asking for help. It’s so hard for me to ask, to take off my caretaker hat and let those around me, take care of me. But I have to. I need my tribe.

My treatment cost approximately $50,000! Non of which insurance covers because it’s considered “experimental”.

I will have to be away from my family for 14-18 weeks and live in Arkansas for the treatment. We are trying to find an affordable VRBO now. This is all happening so fast, I feel like I’m drowning. I’m terrified, but trying to stay hopeful. I cry all the time, in pain or in the heartbreak of all the things I will miss while I’m away. Ava’s 5th grade graduation, Avery & Addison’s 13th birthdays, our growing business, Chad’s snuggles every night, and the weenies. But I have to FIGHT! This disease is not only affecting me, but so many around me!

I have to fight for them, for me, for everyone that I need to be here for, and be the best me for. The Spero Clinic will give me the treatment to fight and get my life back from this terrible disease. Dr. Katinka told me, when I leave there, I will be at a pain level of zero and I will be running again!

A return to normal life is possible, but I cannot get there alone. With your prayers, donations, and help reaching others there is a chance that my daughters can have their mom back. There is a chance that my husband can have his partner back. There is a chance I can have myself back. Please, we need your help.

For more info on CRPS & The Spero Clinic:

https://www.thesperoclinic.com/conditions/complex-regional-pain-syndrome/