Since it isn't a condition most people are very familiar with, I've attached a good link below. It is a very rare autoimmune disorder that causes muscle weakness, stiffness, and pain, as well as a characteristic itchy skin rash.
I first developed the rash on my face in November of 2006, then it spread to my upper arms, chest and back. I was referred to a dermatologist, who diagnosed eczema and gave me a steroid cream, which didn't help. But it wasn't until September of 2007, when the muscle symptoms started, that things really went downhill. I had fevers, muscle stiffness, and was sleeping all the time. But it wasn't until a recreational volleyball game in mid-October that I realized something was really wrong. I was unable to straighten my arms to bump, couldn't hit the ball more than three feet when trying to serve, and couldn't lift my arms over my head to set the ball (once, it actually hit me in the face - so embarrassing). Not that I was ever a pro volleyball player or anything, but I used to be decent at it! That game, the mortification and fear, is still burned in my brain - I haven't played volleyball since.
My family doc did some tests and identified some abnormalities, but didn't really know what to do about it, so he referred me to an internal medicine specialist. However, I wasn't able to get in until late December. In the meantime, things got progressively worse. I couldn't lift my arms above my head to do my hair or get a cup down from our kitchen cupboard. I couldn't get dressed without help, or go up a flight of stairs without taking a break. I would work my 8-hour day, get home at around 4:30pm, and sleep straight through until 7 the next morning. Food held no interest for me, and I lost about 15 pounds from my already-slight frame. Finally, I started having trouble swallowing - food and liquids would just get stuck in my throat. At this point, I got really scared and realized I needed help quickly.
So, I went to the ER in the city where I was living at the time. I saw internal med docs, neurologists, rheumatologists, speech-language pathologists, a surgeon, and a dermatologist. Within a day, I had a (probable) diagnosis and an appointment for a muscle biopsy to confirm it. A few days later, I had the muscle biopsy, and received the confirmed diagnosis that same evening - "moderate to severe dermatomyositis" - the evening before my 25th birthday. I started high-dose steroids the next day.
Truthfully, the primary emotion I felt at this time was relief. I finally had a diagnosis, I was going to get treated, and I would get better! I knew DM was often a chronic disease, but I figured because I was young and otherwise healthy, I would be among the lucky 20% of people who have an initial flare, receive treatment, and then stay healthy.
I required almost two full months off work to recover my strength, and then several more working reduced hours. It was so humiliating, being 25, in my first real job, and having to take disability! I did physical therapy and (tried to) rest - although steroids made that difficult. I started methotrexate and plaquenil several weeks later as well. However, I approached it all with a fairly positive attitude, and figured that I'd recover from this disease and be back on track.
Unfortunately, that hasn't really been the case. In many ways, I am glad I didn't know what a long, hard road I was in for - it made it easier to focus on my initial recovery with determination and optimism. I had no way of knowing at the time how profoundly I was going to change. But more on that later...
http://www.mayoclinic.com/health/dermatomyositis/DS00335
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