So, my Addison’s is something I haven’t spent a lot of time writing about so far. The Lupus and Chiari have been more of an urgent subject for me in the last 6+ months or so, and my Addison’s has sort of been on the back-burner. I though perhaps it was more under control than the other 2, but I’m not really sure. It’s hard to know what’s what when you have more than one thing going on.
I went to see my Endo last night. He only takes night appointments, which over the years has become more of a pain in the ass as I’ve gotten sicker. I got there at 8pm and spent a fair amount of time in the waiting room, and then getting my height and weight and talking to his assistant about things other than health. The office itself has probably 2 windows, none of which are open, so it was stuffy and a million degrees in there, and to top it off I was having stomach cramps for some unknown reason. At one point I was actually trying not to vomit. It was kind of ridiculous.
Anyway, I’m underweight as usual, but I stopped losing weight so that’s good. I’m bummed that I didn’t gain any. I’m tired of my pants falling down. I’ll keep at it. It’s a lot harder than it sounds, because my stomach is a mess all the time and a lot of fattening foods just make me feel sick. I decided that I probably should just eat a bunch of soy ice cream (yup, lactose intolerant).
After a long wait and chatting it up in the lobby with the other patients, it was my turn. I talked to the doctor about the Chiari and the syrinx. He gave me the name of a neurosurgeon, so maybe I’ll get a consult with him so things aren’t so up-in-the-air. I’d like to talk with someone who has actually done the surgery to see whether they think I could handle it or not.
I mentioned that I have suddenly become salt-sensitive, which is weird for me considering I’m required to eat extra salt every day. So I’ll back off on the florinef a little bit and see how that goes.
I told him my sugar has been weird, not technically high or low but when it’s lower and elevated I’m having some hypoglycemic symptoms. He said I should just keep away from sugar for now.
My testosterone is nil. Which I am realizing is probably why I have no muscle mass. So I’ll be starting DHEA which is an over-the-counter supplement that converts to testosterone. Hopefully I’ll be able to get some muscle back so doing everyday things isn’t so tiring.
They took some blood and will be checking for celiac disease(basically an intolerance to gluten) and they will be looking at iron and D3, both of which I’m sure are low. It’s been hard for me to keep up with a vitamin regimen because my stomach is such a mess from all the other medicines I’m taking. And quite frankly I am just so tired of pills. I need to take vitamins though, there really is no excuse. I also need to take some magnesium for my leg cramps. We’ll see how that goes.
They gave me a pee-pee jug for a 24 hour urine sample. I can’t wait til I have to piss in that thing in the middle of the night. It’s loads of fun when you’re a girl. I think they are just checking cortisol with that, but I don’t remember. I was at the office til midnight.
So that’s it for now. Benlysta infusion next week. I’ll update on whether or not the DHEA and other things are helping at all.
I hate pills.