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Category Archives: Personal

Ok, so I didn’t mean to scare people w/the Tweet yesterday, I just really love that quote! I do, however, have a diagnosis: polymyositis.

It is a degenerative muscle autoimmune disorder and yes, it does carry a much higher cancer risk. The Doc doesn’t think I have cancer (yet) but it is something I have to watch out for. This is especially true if I get the body rash again as that would make it poly-dermatomyositis and THAT carries an even higher cancer risk.

What does this mean? Well, similar to lupus I have to stay out of direct sunlight (without adequate sunscreen) and heat. I am likely to be on heavy steroids and really strong immunosuppressants for the rest of my life. Yes, this is currently NOT curable.

To top it off I also now have to watch my blood sugar even more than I did before because between the fact it isn’t well controlled now, when I am on steroids it is even LESS well controlled. I also need to have regular pulmonary function exams and checks on my lymph nodes.

Also I have to note that the Doc really didn’t like it when I told her I was taking 2000mg of Ibuprofen a day…and rather often at that. Her question to me was “Do you enjoy having kidneys? ‘Cause you won’t if you keep that up!” This was after asking me “You mean 200mg of Ibuprofen a day right?” and I had to respond with “Nooo, I am taking 10 capsules of 200mg each…2000mg.” I wish I had a picture of the look on her face (and I think I had a bruised shoulder from my mother going “I told you so, I told you so!”

So, TL;DR: I am not dead, I have a good diagnosis, more tests forthcoming, and polymyositis can suck a big, fat one.

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