Living with an Auto-immune disease(s) is hard to describe. I have days I wake up, greet the world with a smile on my face and a skip in my step feeling as though I can run for miles. Sometimes, those days are followed by restless nights and mornings spent stretching and preparing my legs before trusting them with the weight of my body.
The ease and joy of the good days are all too often overshadowed by the hard days. It feels like a tease. Like, this is what your life should be, but nope, today your legs feel like they were trampled by an elephant a-a-and you have a bleeding sore in your nose. Good morning!
What’s weird is it wasn’t always like this. When I was young, I was nimble and wild. In middle school and high school I played volleyball. In the early years of college I worked out at our university gym and hiked my weekends away on the local trails.
In 2013/2014 I became very ill, so much so, that when I called my doctor, they thought I had meningitis. I went to urgent care, then sent me back to my PCP who ran blood work, then sent me to a specialist, who ran blood work, and then sent me to another specialist, who ran-… you get the idea. And I’m sure you’ve heard the same story from anyone with an autoimmune disease. I’ve certainly read my share of similar stories while doing my own research. So, after 1.5 years of ping-pong medical advice, I ended up at a rheumatologist who dug deep down into his vast repertoire of possible autoimmune diseases and came up with a Fibromyalgia diagnosis and the medication to go with it.
For 2 years I lived my life medicated for Fibromyalgia, and for 2 years I believed I was choosing the right options, taking the right medication. I thought I was treating all the symptoms as best as possible with the tools available to me. Unfortunately, my symptoms only got worse, nothing worked because the problem wasn’t Fibromyalgia. That last sentence HAS to be the most common sentence I’ve read in every autoimmune journey written online.
In 2018 I started experiencing symptoms that were taking over my life in a new way. I was having nerve pain, swelling, blisters in various areas, fatigue, issues with my digestive system and more. I had gotten to the point where my daily nap became 2- 3 daily naps, my “5 min late to work” became 20 min. My pain and discomfort was increasing and my control was slipping.