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I’d like to say that I’ve bounced back from being diagnosed with osteoporosis last year, but there’s not a lot of bouncing going on at the moment. I’ve persevered but it’s kind of like that dark cloud always hanging over my head. I feel like I aged overnight.
Last week, I found out that someone I know who has the same type of muscular dystrophy was also diagnosed with osteoporosis/severely low bone density. For privacy reasons, I don’t want to give anymore details than that but from this discovery, I read some case studies online and guess what? This is in fact, a thing. Because the type of muscular dystrophy I have is considered a rare disease and is also not usually fatal, there’s just not a lot out there about it nor has there been very much research dedicated to it. But there are some very concrete examples of people with this type of muscular dystrophy also being diagnosed with osteoporosis (at lots of different ages too—very young to older than me).
The neurologist I saw said it wasn’t likely that my osteoporosis was caused by my disability, but I’m now convinced that it absolutely was. There’s enough evidence out there now to support it. One of the case studies I read was on a 52 year old woman with the same type of MD as I have who fell and fractured her knee. They gave her a DEXA scan (bone density test) and it came back positive for osteoporosis. After her knee healed more, they did another DEXA scan and it showed her bone density had decreased even more. They put her on the exact injections I’m getting now which got her to a point where her bone density was better, and she didn’t have anymore fractures.
Reading this case study did two things. Firstly, it gave me a whole lot of hope. I wasn’t sure I wanted to do the injections for a long time because I wasn’t sure it would even help. We’re still not sure that it will help long term, so that’s a bridge I’m going to have to cross eventually. Hearing that someone else was successfully treated with the injections was a huge relief though. Secondly, the case study freed me almost much completely from the idea that it was my fault that I got osteoporosis. I thought I wasn’t active enough or my lack of exercise once the pandemic hit caused it. Now I know I may have actually had this for a long time and just never known (and was lucky to have not fractured anything after the 100s of times I’ve fallen). I know I never should have blamed myself to begin with, but it was hard not to shake the feeling that maybe, if I had done something differently, I wouldn’t have ended up here.
It was like a huge weight lifted off my shoulders to hear all of this. Now I have to decide if I want to go back to my healthcare provider and pick up the fight again to see an outside specialist. I’m sure they’ll discount my findings or say it’s not enough—anything to get out of paying for me to see someone else. I’m essentially a walking case study of my own now. You can’t be on the injections long-term because they cause too many side effects, so I have to get off them eventually. Then we’ll have to see what my bone density does after that.
I’m not a particularly religious person, though I do believe in a Higher Power (and she’s female btw). Things like this make me doubt the existence of any kind of God so much though (a lot of things going on right now do). Being born with a disability that causes us to fall a lot and then getting a disease on top of that that causes bone fractures—it’s a cruel, cruel irony. I definitely don’t subscribe to the idea that God doesn’t give you anymore than you can handle. Sometimes I think sh*tty things just happen to us. It’s not a punishment and it’s not fair, but it just is. I’m trying to keep the Pity Party to a minimum, but am allowing myself to feel all the feels too.
For now, I’m grateful I ended up choosing to go with the injections because it sounds like those might be the best treatment option for me anyway. I will keep the updates coming for sure.
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I appreciate your honesty and, even more, the depth of your experience. I hope you continue to advocate for yourself and that doctors truly listen to what you have to say.
I know you'll keep fighting to get the care and treatments you need, and I'll continue to hope you don't have to fight so hard to get it.