MSU Founder and President, Jerry Williams, shares his #MyositisLIFE for Myositis Awareness Month and MSU’s #MyositisLIFE project.
You may be aware that I have a condition called Polymyositis. Maybe we have talked about it, maybe we haven’t. But today I am sharing my #MyositisLIFE in hopes that you gain a better understanding of my rare, autoimmune disease and how it affects me. This, of course, is the very short version.
There is no cure for any form of Myositis, and very few treatment options. I was diagnosed with a refractory case of Polymyositis in 2003, at age 27. This means that I have not responded well to treatments. However, I continue to try and help inspire others to live their best #MyositisLIFE by keeping a positive attitude, wearing a smile, and educating others. My diagnosis was a two-year long process where I was called a liar, told pain is not a part of Myositis (pain being my main symptom at first and to this day), and shunned from various doctors stating that whatever I have is not in their speciality.
Although I have been hospitalized several times due to Myositis, it wasn’t until 2014 that I experienced major complications.
I was hospitalized for the majority of the spring and summer of 2014. It began with a really bad flare where I lost over 90lbs in a 2 month period. I was then diagnosed with cachexia, or failure to thrive, as my body was not absorbing proteins and a host of other issues that, to this day, my doctors do not understand. To try and add weight, we first started with medications which had no affect. Then, my surgeon determined we must try something more aggressive and inserted a PEG tube for feeding. After trying this for several weeks we realized it just was not helping. Then, after many months of insurance appeals and doctor office delays, I was approved for TPN (IV nutrition) which helped put some weight back on. I was on TPN (infused) for 12-14 hours a day, every day. Each night my husband had to play nurse, setting up the infusion, injecting vitamins and insulin into the bag, etc.. TPN was working and I gained a few pounds, but then a serious complication arose that almost caused me to lose my life, twice.
The complication begin with a bowel perforation that may have been caused directly by the autoimmune disease itself, or long-term, high dose prednisone. I was told that either one may thin the bowel walls making them prone for perforations. The subsequent emergency surgery, where they removed half of my colon and 6 feet of intestine, led to an infection, drainage tubes, and almost losing my life.
When the radiologist removed the drainage tube it sliced my iliac artery, a major artery that branches off of the aorta, right in half. My blood pressure bottomed out and I was rapidly bleeding out internally. I am thankful for the quick response that day and for the those who donate blood. Had it not been for that blood being available, I would have certainly died that day.
To this day I am still experiencing a major flare, but a new treatment regimen is starting to help, albeit very slowly. I am currently on Rituxan infusions, IVIG infusions, Tacrolimus, and prednisone. Fatigue is one of the major symptoms that I struggle with daily, as do most of those living with an autoimmune disease. My other symptoms include muscle weakness in my legs, hips, and upper arms, as well as severe pain.
Since my Polymyositis diagnosis, I have been diagnosed with Lupus and Vasculitis, thereby causing skin rashes, irritation, and eruptions requiring me to avoid the sun as much as possible, and/or wear UV protected clothing, which is costly.
Many do not understand life with a rare, sometimes invisible disease, and I have made it my life’s mission to try and help others to understand and better recognize Myositis. I am fully committed to the mission and goals of MSU and look forward to the helpful patient-centered programs and services that we are developing.
I have made such wonderful friendships as a result of being diagnosed with and becoming involved in Myositis. I am grateful to have had the chance to meet so many others facing the exact same circumstances and to have several support options that allow us to learn through shared experiences. No one should ever have to feel alone living with this, or any other complicated disease where little is known in the medical community.
Tags: myositis awareness myositis story