I wrote the following a month ago, but didn't publish it. I wasn't sure what was going on with my body. I didn't want to post this to worry people, or ask for any sympathy or advice. I wasn't going to put it up here at all. Then I remembered, I don't really write here for the benefit of a reader. I write here to keep an account of what's going on in our lives. And this was something that affecting me and my family.
written 8/24 embargoed until more info is provided
I just got a spam email that had the subject line "It's all right. I can take it."
And for some reason, this email (with the contents promising for a larger "member" in days with a magic pill) was more comforting to me than Jim's greatest attempts at consolation last night.
"It's all right. I can take it."
My body is doing something weird right now. My muscles are leaking enzymes. Apparently everyone's muscles are a little leaky, but mine are extra leaky. We found this out when I told the fantastic Dr. B that my muscles were sometimes pained in a way I can only describe as weird shooting crampy dull industrial rubber bands around parts of me. And sometimes the rubber bands are pointy. Sometimes it lasts 20 minutes, sometimes only a few seconds. Mostly it's in one limb at a time. Sometimes it happens several times in an hour. Sometimes it takes a few days off. So, we did blood work and my CK level came back high (150something). She ordered another round of blood work and it got to 176. I didn't really know what any of this meant, so I did some online research and proceeded to have the pants scared off of me by a list of diseases that are diagnosed with an elevated CK level.
By the way, when capri's came out, I swore I would never wear them. Now most of my summer pants are at least cropped. Damn fashion trends.
This week (8/20) has been difficult, as my whole body is achy. It might be totally unrelated to my extra leaky muscles, but last night I got scared by the "what if" parade (including floats from ALS and MD, as well as the Lupus high school marching band).
And poor Jim. Well, what with all that testosterone, he went into problem solvin' mode. Very sweetly saying things like, "Why worry now? We don't know what it is. All this worry isn't going to make you feel better."
He's right. My brain knows that. But I needed a little window to sneak into a pity party. And again, all that maleness didn't get that all I needed was a hug. And a box of tissues.
But this invisible spammer sends me a virtual chill out.
And he's right. It's all right. I can take it.
And now for the latest info (written on 9/21)
I saw a Rheumatologist on Monday and he ordered more blood work. The results came back and I got a phone call to say that my Vitamin D levels are very low (most folks have a count of 30, mine is 13). This would account for the pain and the pain accounts for the elevated CK. In this round, my CK is back down to 158 - good news. I am taking a prescription strength D supplement, and trying to soak up the sun as much as possible. I've spoken with my Dr. who told me that this isn't related to my vegetarian diet. I go back for a check up in 6 weeks.
If the answer is this easy, I am a lucky girl. Big breath in, and a giant PHEW out.