I’m tired of pretending that I’m okay. I fake it in front of family and friends. I don’t want people to get upset and that’s totally on me. I guess I’m a people-pleaser after all. I mean, what can happen if they know? I just think that it might be worse if I keep hiding it from them. Then there’s the fact that I am having a hard time facing new diagnoses and symptoms. There’s no one to talk to about this either. I suppose a counselor may be in order.
Having CRPS is one thing, but I’ve been diagnosed with several rare diseases and now have a plethora of other “minor” diseases like fibromyalgia, diabetes, and kidney disease. I was just diagnosed with Dysautonomia and Lymphedema, so that sucks. My life expectancy just took a nose dive and no one understands.
It’s also getting dangerous to go places on my own. Dangerous because I can get hurt if I fall, which I do often and I certainly can’t depend on the kindness of strangers to help me. I’ve broken bones in both feet at the same time, twice, yes, twice. The last time I broke my CRPS leg too.
How do I make this transition from playing fine to letting people really know what’s going on?
Fist of all, wearing shoes sucks! Plus, I just got diagnosed with Lymphedema (Swelling like you’re going to pop.) I started my CRPS journey in 2001 after surgery to repair torn ligaments. I wasn’t diagnosed until 2014 after more surgeries made the CRPS obvious to my orthopedic surgeon.
In the early years of dealing with CRPS pain, I wore lace-up boots rather than ugly and uncomfortable braces. I limped from 2001 to 2013 not knowing what was wrong with my foot. Not one podiatrist or doctor could give me answers. They just tossed some hardcore drugs my way and sent me to physical therapy. The boots hurt, the drugs ruined my kidneys, and I was at a loss.
Today, I can wear shoes for a while because I now have a Dorsal Root Ganglion Spinal Cord Stimulator and I am taking medications that aren’t as debilitating and harmful as narcotics. The shoes I wear the most are called ChayChanx, which are very cushioned and feel great. I also buy a full-size larger shoe no matter what I get.
All that to say, the icy burning pain is still a struggle, and my skin is dry and discolored. I’m getting blotchy dark areas mottled with the redness and the purple tones. My feet look like they’ve been run over by a truck and dragged 10 miles through the wilderness. Okay, I’m exaggerating, but that’s seriously what it feels like to live with CRPS.
Along with dry, cracked skin, decolorization and pain, I have obvious circulation changes which may be causing the discoloration. My primary doctor sent me to a vascular surgeon who diagnosed me with Lymphedema. I have to wear these hot neoprene leg wraps now (Like for the rest of my life!?). And honestly, I have eight doctors right now and I don’t remember what else they are going to do. Jeez. I’ll have to call them in the morning.
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