2:59am June 6, 2015

I still remember getting diagnosed with adrenal insufficiency.

My doctor was extremely cautious about interpreting the initial cortisol results, which said there was not enough cortisol to measure. He sat me down, got very serious, and told me I might have this thing called adrenal insufficiency which would be a very serious problem if I did. But first he would have to replicate the test results, then do further testing.

He told me if I went on steroids, we could expect minor improvements in several areas. He asked a lot of random seeming questions, like when was my last period (age 28). And he sent me off for further testing which only confirmed that not only did I have it but it was pretty severe.

The steroids got me out of bed and able to exercise for the first time in years. Understand these are the Josie if the steroids athletes use. This mind can actually cause lots of muscle mass. But when they replace a near total lack of cortisol they can get rid of exercise intolerance,.

Exercise intolerance is when your body responds to even minor everyday exercise with symptoms like going limp, nausea, vomiting, shaking, temperature changes, etc. That is gone now. Within weeks I was doing fifty jumping Jack’s (but injured myself due to lacking the muscles to back up my loose joints) and climbing eleven flights of stairs. Prior to this I could not jump even with a grab bar and could not climb one flight of stairs.

I haven’t used wheelchair in a year or so. I’d gotten a manual one not dreaming that even that would be mostly unnecessary. Even with bruised ribs I’ve been walking long distances.

I know this is still serious because they insist on me carrying emergency steroids in injectable form, wearing a medical bracelet, and always informing EMTs I have adrenal insufficiency no matter why I called them. And they said I’ll be on steroids the test of my life. But thanks to my GO and my endocrinologist, the rest of my life could mean 40 to 60 more years when we were expecting more like single digits, low single digits, before this.

And yes I’ve actually posted the test results before.

I still have trouble believing it went from “you may have something really serious but likely don’t” to completely changing my life. I used to wake yup at the times of day cortisol is the lowest, so limp my neck hurt from holding into my floppy head, unable to move my arms far enough to call for help and unable to stay awake, but waking up again and again totally limp, until it passed within hours. That went away on steroids. But I’m told it meant my life was in immediate danger at the time. I’m glad it’s gone.

But the adrenal insufficiency?. Very real. No question even among the doctors who hate me the most. They can’t argue with test results any more than the myasthenia anymore. My GP meanwhile is so excited that he is trying to fix everything now.