The story of Macy
I was nominated by my mom to do the ice bucket challenge. Not for ALS (a great cause!) but for two disorders than personally affect our family. The ice bucket challenge has gathered so much wonderful attention and created much needed awareness for a devastating disease, but we’ve decided to stray from the trend a bit and challenge friends and family to donate to The Myositis Association (for me) and TheEpilepsy Foundation. So instead of dumping water over my head (mainly because, due to my autoimmune disorder, my skin reacts adversely to being wet and I would probably be in pain for a while after), I’ve decided to write down the main parts of my story and share them with you. Hopefully, with your help, we can remove the stigma of epilepsy and garner the same amount of awareness for my rare disease as we have for ALS! I encourage you to share this post as much as you can, with whomever you wish. Every donation puts us that much closer to a cure!
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I suffer from Dermatomyositis which causes severe skin and muscle inflammation. It’s one of the three types of Myositis; the first being Myositis, second Dermatomyositis, and third, Polymyositis.
My symptoms began in September of 2010 with a small rash on my right index finger. I thought I had gotten into some itch weed, but it didn’t go away. In fact, it quickly began to spread. When it reached my cuticles and caused painful inflammation, my mom decided it was time to see the doctor. He initially thought I had a Staph Infection, so they put me on some antibiotics. I didn’t get better, in fact, I got worse. At this point the rash had spread to my nose, and my face had begun to swell. Next we tried a Dermatologist. He looked me over and almost immediately decided it was one of three things: Lupus, Lichen Planus, or Dermatomyositis. He was a good enough doctor to admit that he was not confident enough to diagnose me himself, so he referred me to a Rheumatologist in Iowa City. 3 months, more rashes, and multiple tests later they decided in December of 2010 that I had text-book Dermatomyositis.
At this point I had been preparing to attend college 8 hours away. We asked if I should decline and stay near home, but the doctors encouraged me to go and live a normal life since I had nothing but an annoying rash at the time.
Not long after I started the spring semester of school the weakness and fatigue began creeping in. I didn’t notice it at first, I thought it was just the stress of college life and being away from home. Eventually I found myself sleeping 14 hours or more and still having trouble staying awake in class. Dressing myself in the morning was a struggle, working was a nightmare, and I had to rest after each set of stairs I took on my way to and from my classes. The rash had spread as well, causing my chest to become raw and at times even bleed. It also covered my elbows, knees, hips, and shins. I had finally reached my worst.
At my worst I was disabled. I couldn’t get up from a sitting position, so I would choose to stand instead, even though it exhausted me to do so. I chose the exhaustion over the embarrassment of asking passing strangers to pull my dead weight up off of the ground, since I had no strength to do it myself. I couldn’t undress without asking my roommate to help me, since my arms physically could not stretch over the top of my head. Bending down to put my shoes on was as much a chore as anything I’ve ever done, and tying them was out of the question. The rash that had once been confined to my knuckles had crept onto my palms and inside of my fingers, rendering me nearly completely helpless. I couldn’t open a ziplock bag without biting my lip to keep my mind off of the pain, as the tips of my fingers had become nothing more than what felt like raw and exposed nerve endings. The steroid cream they gave me to help with the rash made my skin so thin that putting my hands in my pocket would cause tears and rips in my flesh.
The real curse of this, if you ask me, was that I looked relatively normal. Professors didn’t understand why I was late to class and then couldn’t keep my eyes open. Supervisors rolled their eyes and sighed at me when I asked for help opening packages, didn’t have the strength to do dishes, and told them I simply couldn’t carry a bowl of soup across the room without dropping it (I had been assigned to work at the restaurant on campus). Even friends became exasperated at my helplessness. I couldn’t explain what I was going through, I barely knew myself. All I knew was that I hated how dependent on others I had become and how despicably helpless I was. I had always been so strong. If something needed done that took some level of strength, people looked to me because they knew I could deliver. I had strength, stamina, and determination. Now all of that was gone. I still haven’t gotten all of it back, and that’s a reality I struggle with daily.
After a few months, I don’t know how many more tests, and one new doctor later, I was finally improving. I left school after that first semester, and continued to get better at home. When I visited again in the fall, some people didn’t even recognize me anymore.
It’s been 4 years since I began this journey, and I’m sure it will be several more before it’s over. I hope to go into remission someday and my doctor said that she thinks I’m a very good candidate for it. I have continued to progress, slowly but surely, and only hope that this trend continues. The rash on my body has all but disappeared, all that’s left is the rash on my face and hands. I’m much stronger than I have been in years and the exhaustion is all but gone. Every year I go to Johns Hopkins for my follow up and every year there is a new treatment being researched. That research is possible because of donations, grants, and general awareness and interest in this disease. Please share my story and encourage others to do so. The more people know, the more people care, and perhaps, the closer we’ll be to a cure.
Update as of February 28 2015
Rare Disease Day
My doctor and I decided to reduce my does of Imuran last August since was dong so well. I have since had a relapse. The rash is back on my hips chest legs and elbows. I’m tired more often and have a harder time catching up on my sleep. As a result I am back on my normal dose and already feel much better. Hoping that we can try the reduction again soon!
(link to the full story with photos on my blog: http://thismessofme.blogspot.com/2014/08/a-little-twist-on-ice-bucket-challenge.html )