At this point, I realized that to tell my tale properly, I have to first get through this lengthy sidebar. You'll have to forgive me for jumping here and there - I'm not a professional writer by any stretch of the imagination, haha.
Let's just cut to the chase. In 2011 I was diagnosed with Juvenile Dermatomyositis. At the time I had no idea what it was, and how it was going to affect my life. All I knew was that I was extremely fatigued, even after resting and sleeping. My muscles ached, and I didn't have the strength to lift my violin.
Soon after I couldn't get up from squatting. They put me on oral steroids (Prednisolone 60mg), and told me I'd be good within a week. Well, that was a lie, haha. Little did my medical team know that I wouldn't respond well to the medication. Once again, what was supposed to be a week, turned into months, and now years.
Note - I realized again that I should explain what 'JDM' is. It's essentially an autoimmune disease, i.e. your body's own immune system mistakes your muscles and skin as 'foreign invaders', then attacking them mercilessly.
A few months from my diagnosis, in about April/May of 2011, my muscles' inflammation and destruction was so extensive that I was left bedridden. I had difficulties breathing, and barely had the strength to swallow my food. I was then put on a cocktail of drugs; Methotrexate, Cyclosporine A, Intravenous Immunoglobulin G, later on Mycophenolate Mofetil.
I'm not sure which one of the drugs worked, perhaps it was the mixture of them all that set me off on the road to recovery. Every day it was physiotherapy, learning how to walk again, how to stand up straight without my back collapsing on me - and how to take care of myself.
As you can imagine, none of this worked out very well for my gender dysphoria. The steroids and cyclosporine gave me more body hair, more facial hair. It packed on pounds and pounds of fat. My face was swollen, and my skin was torn with purple striae. Not fun in the slightest, even for a 'regular' person - let alone someone with such negative self-image to be given more reasons for self-loathing.
Side Note - I remember prior to the steroids giving me all that fat, however, I had to see a nutritionist/dietician. She gave me the worst advice possible - that it was 'impossible' for a person on steroids to 'not be fat'. And that I should just 'give up' on any notion that thought otherwise. That triggered something in me - perhaps my brain saw it as a challenge. I ended up losing weight to a point where it was dangerous; I ate one slice of bread a day and got to 60kg for a person who's 5 foot 9. I guess she was right, ultimately, the steroids did give me dozens more in pounds after that...
Somehow though, I managed to smile my way through 'JDM'. I'm not sure if I was just used to wearing that mask, or if I really was just so happy-go-lucky with it all. The only times I cried during my rehabilitation and treatment, was after my muscle biopsy (they had to cut a 5cm wound in my thigh and take some muscle fibers for laboratory testing). The anesthesia had worn off, and the pain was a little to much for little-me...but I couldn't move in my bed to make the pain a little better, I was too weak. And I was certainly far too weak to reach for the nurse's call-bell. I just cried with the pain throughout the night.
That being said, the pediatric ward is an environment in which you have to grow up quickly. Patients in the beds next to me were passing away on a daily basis. Some from congenital heart diseases, some from other rarer conditions like Duchenne's Muscular Dystrophy. Hundreds of cases of childhood depression, diabetes, inborn errors of metabolism. It's a lot.
At one point I had thought to *never* do medicine. The wards were as dark a place as any, and little-me had a pretty intense fear of blood. But...again, I had put my head down and focused solely on work. I had the grades for it, and a unique experience that meant I knew what it was like to be a patient, first-hand. What it feels like to suffer, what makes us feel better. It's the little things.
Eventually I felt that...if I didn't get into medical school, it would be a waste of my potential, and a disservice to society. But...I can't help but think that this experience was just a golden ticket handed to me. As I said in my last post...it's a saga in and of itself. A tale tantalizing enough for any medical school interviewer to drop the purpose of the interview and just listen to said 'life story'. I don't know - I worked hard, and I got here. But the internal demons will never stop me from discrediting myself.
In any case - for anyone reading/wondering - I'm a lot better in terms of JDM. I can now walk, run, jump, and do the things that I like. I still have to take a bunch of meds, and that sucks, but I'm prepared to do that with HRT anyway :). It's been 10 years and counting...
~ Macy/Hearth
Comments