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, it quickly began to
spread. When it reached my cuticles and caused painful inflammation that kept me from being able to even put my hands in my pockets, 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 at all. 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 a painful 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 or out of a chair, 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 or reach behind my back. 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, most people didn’t even
recognize me anymore (they thought I was a new student!).
It’s
been 4 years since I began this journey, and I understand now that it will never be 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 mostly 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.
Below is a side by side comparison of the swelling in my face.
(Click to enlarge)
(Click to enlarge)
Summer 2010 Spring 2011 Spring 2014
(I do not have any photos where you can see my rash because I simply refused to have it photographed as a result of being so self-conscious.
I am wearing the same brand of makeup in all three photos, though.
You can see how swollen my face was, as well as how much my medicine had thinned my hair, brows, and lashes.)
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There
is so much more to my story than I was able to put in this little post. If you
have any questions, or want to know more, please feel free to contact me, I’d
love to speak with you!
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Update as of February 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!
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Update as of February 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!
Update as of August 2017
Thanks to a combination of pregnancy and IVIG infusions, I have been symptom free since the summer of 2016. Unfortunately I have developed severe reactions to my IVIG in the form of Aseptic Meningitis and am looking for alternative treatments to keep me on the road to complete remission.
Thanks to a combination of pregnancy and IVIG infusions, I have been symptom free since the summer of 2016. Unfortunately I have developed severe reactions to my IVIG in the form of Aseptic Meningitis and am looking for alternative treatments to keep me on the road to complete remission.
