Dear Family,
What it is: I've been diagnosed with Dermatomyocitis. Derma = skin, to = and, myo = muscles, and citis= disease. So literally, skin and muscles disease. This is an auto-immune condition where my body attacks my skin and muscles as if they are viruses and tries to eliminate them from my body. No one knows how it's triggered. I will have it my whole life and it can be serious. At the moment, I'm considered a mild case because my heart and lungs aren't affected.
When it started: The earliest I remember was Valentine's Day, 2010. I felt slight soreness in a few muscles that seemed out of place and I didn't think much of it. Over the next weeks, the soreness developed in most my arm and legs muscles and was mildly sore. I was began to feel a little tired, but not a normal kind of tired.
March 1st: By this time I knew someone was wrong with me but thought it still might resolve. I felt I had exercised really hard with mild/moderate pain, was tired all the time, and noticed that things I normally did took more energy. Books and laundry became heavier, it was harder to shampoo my hair, I couldn't type on email. My legs and arms were heavy. This is actually your body losing muscle strength .... though it took us a while to realize that.
March 14th: This was Alyssa's 7th birthday. During church I was so tired I went to lay on the lobby couch for 20 minutes. I had developed high nausea and felt pretty yucky most of the time. The next day I went to my family doctor who ordered a standard blood test. By now I couldn't climb into bed, use stairs, or walk even far enough to do the shopping. During these weeks things were the worst. The pain became severe and tiredness turned to fatigue, and the nausea made me eat crackers and gatorade if I could even keep it down. I laid in bed 100% of the time trying not to move. I used willpower and a overly developed sense of responsibility to go to work, but I mostly sat at the desk and held on.
April 12th: After shuffling into school and being told by another teacher that she'd never seen anyone look so bad, and I cried in the hallway because of pain and fatigue, and I agreed to take a sick day and left work. I went to the doctor instead and saw a different family doctor. All my tests had come back negative, but he could see how weak I was, and ordered another round of more aggressive tests. I begged a bottle of narcotic painkillers from him and took those as often as possible to get by.
April 15th: I met with my Gastroenterologist. He found the disease inside my stomach and convinced me to start a one week steroid treatment. I felt so much better on those steroids, that he convinced me to start a low dose of prednisone. He also gave me something for the nausea. So the rest of April and first part of May, I lived on narcotics and steroids, and was not nearly as nauseous. I also felt better, could get up and move around, get dressed again, and generally hang on a lot better. The goal at this time was to survive until I could see my rheumatologist.
May 12: Finally the day arrived for my appointment with the guy who could give me answers. First though, they needed me weaned off the prednisone I had been taking. That drug is very harsh and messes up all the tests they needed. It was also decided I needed a muscle biopsy, which couldn't be done until I was off the prednisone either. So I began lowering the dose 25% each week. As the prednisone left my system, the pain, weakness, and fatigue returned, but this time I was ready with the narcotic painkiller and used those anytime I needed it.
June 6: I met with my doctor who assured me that no matter how the test results would come back, that I would need to start an aggressive high dose of prednisone. She wrote me half a dozen prescriptions right there while listing side effects for 10 minutes.
June 8th: The hospital took out a piece of shoulder muscle around the size of a Tootsie-Roll as a biopsy. I started my pills that night. By the end of the week the results were in ... the muscle biopsy showed the classic Dermatomyocitis pattern and it's definitely what I have.
So now what?: So now I've been taking my drugs for 10 days and I am so much better. The pain has disappeared as well as the crushing fatigue. I have lost around 80% of my muscle strength, but in the 10 days of drugs, I've gained back up to 50%. I have a few side effects from the prednisone, but I manage them ok. I'm up doing things I haven't done in months, like carrying laundry, unloading the dishwasher, climbing up stairs again. I still can't walk a long way or carry anything remotely heavy. But every day I do get a little stronger and feel better.
So what about your treatment drugs?: I will lower my 60 mg down to 40 after 4 weeks. Then I'll lower after another 4 weeks to 20 mg. The doctors monitor my blood and enzyme levels as I go to be sure I'm not relapsing. I'll then wean from the 20 mg, but that takes a long time to do ... but eventually I'll be off the prednisone completely. I start an immuno-suppressant drug, methotrexate this week, which takes some time to build up in my system. As the prednisone declines, the methotrexate inclines. The prednisone is supposed to kick this into "remission" and methotrexate maintains the remissions. So by Christmas time, I should be on my maintained drugs.
What about the future?: I have a good shot at staying on the maintenance drugs and never seeing this again. That is our best case scenario. I'll have to stay on the methotrexate for at least a year or two before I can choose to stop, but I assume at this point I'll never stop. The doctor tells me stories of people who left the meds and relapse, but of others who left the meds and don't relapse. Some are on meds but their condition declines chronically anyway ... that would be worst case scenario.
And how do I feel about it all?: This diagnosis isn't a great one and I know many people have understandably been sad and worried. But it's also not the worst one either and for that I feel gratitude. I'm just glad to have a definite answer. I worried they would never know what it was and would never be able to treat. So knowing a name and having a treatment plan in place is great. As for right now, I feel so much better. I'm slowly working my way back to normal life and normal activities. The hardest part will be regaining the strength I lost, so if I can't do some things for a time, just know I'll get there eventually.
And one funny thing: I watched a lot of tv while laying in bed trying not to move. I came across an episode of Seinfeld where Kramer enlists Elaine's help to "pull the plug" if he was ever in a coma. Kramer and Elaine debate the different scenarios offered by the lawyer. My very own condition, no muscluar function, came up in the conversation. Does Elaine "pull my plug" or "stick"?
Lawyer: Situation number four. You're breathing on your own, you're
conscious, but with no muscular function.
Kramer: Well, would I be able to communicate?
Lawyer: I don't see how.
Elaine: Ach, I don't like the sound of this one.
Kramer: Huhh, yeah, let's pull the cord.
Elaine: Yank it like (pops open soda can) you're starting a mower.
Love, Jena
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