Hello friends, it's once again Rare Disease Day today. If you're unfamiliar with what Rare Disease Day is it's a day to raise awareness and provide education about rare diseases, the populations they affect, and advocate for change. Currently there are over 300 million people living with at least one kind of rare disease in the world and the Rare Disease Day website has a pretty cool interactive map of events going on.
Unusually today is a happier day for me that I devote to advocacy work and raising awareness but this year I have mixed feelings about today. Perhaps its a result of having two extremely rare diagnoses tacked on to my already lengthy list in the past couple of months, or simply being tired of being sick. I don't entirely know for sure but there is a strange feeling that occurs when one slows down and thinks about the various strange habits they pick up when living with at least one rare disease.
For example this morning I woke up and as usual took my morning medication, the things I take with breakfast every morning so my GI tract hates me a little less, and the two pills I swallow once in the morning and once at night to remain in control of my voluntary movements, and one to keep migraines at bay. Then I take the first dose of the medication I take four times a day every day and will have to take for the rest of my life to keep my cells from multiplying out of control and causing cancer progression however slowly, it's really quite strange when you slow down and think about it, but it's just a part of my morning routine. I think that's whats at the heart of my mixed feelings this year- that with rare diseases no matter how hard you try to demedicalize life (something my therapist and I have worked on for years) you can never truly escape it, but all the same you learn to live with it and continue on with life in its "new normal" state. I think I''m still learning to live in the "new normal" state of LCH and ISM, even if they won't kill me, they're still serious things to deal with, and unfortunately extremely rare. That said, all things considered I'm doing well, things are controlled and I'm back in school and have time and energy for hobbies again. Flash Fiction February finishes up today as well which is always an enjoyable challenge and good way to explore different themes in disability and interpret prompts...though I'm looking forward to getting back to work on my backlog of longer projects that have been sitting in my drafts.
Wherever you are in the world, I wish you a happy Rare Disease Day, and heres to hoping that with additional research and funding we will eventually get cures or at least significant breakthroughs.
Until next time,
Max
No comments:
Post a Comment