I have struggled with having chronic health problems. And I have struggled with not having answers or even a clear definition of what they were.
That part might finally be changing, and I'm excited about that. After fifteen years of wondering what in the world was wrong with me, it would be a huge relief to know--not only to know what it is, but the validation of knowing for certain it wasn't in my head all this time!
Every few months or so, I'll get back on my research kick and give a few more rabbit trails a try. On my most recent one, I discovered a pituitary center where all they do is pituitary problems (these are often the source of adrenal problems, in case you're actually keeping up with all this medical jargon). As I don't do well with traveling anymore, going to this center in California wasn't really an option. But I did some more checking and found another pituitary center in Atlanta at Emory.
This was exciting! My parents still live near Atlanta. I set up an appointment, drove several hours, and met this specialist.
I tried not to get my hopes up, but that's impossible for me. I can't help it. The doctor came in, was very nice, but she told me the dosage of hydrocortisone I had been living on for years was extremely high, I should not be on a dose that high, and in her opinion I probably didn't have an adrenal problem at all and didn't need the medicine at all.
Well, I tried not to, but I cried. And I kept crying. It was embarrassing, but 15 years of disappointed hopes is a hard thing to swallow.
She was so nice, and gave me great tips on tapering down on the steroids (which I had tried to do several times before but hadn't been able to because I kept getting sick) and told me to come back and do testing when I had cut the steroid dose down to half what I was taking.
I came home and spent 7 months tapering. It was not pleasant. My body was going through plain old drug withdrawal and it didn't want to. Every 2-3 weeks I would go down 1/2 a pill, experience a variety of symptoms on random days, then go down another 1/2 a pill, repeat symptoms, repeat, etc., etc.
The good thing was I lost 45 pounds. The bad thing was the headaches, body aches, nausea, throwing up, stomach issues, hormonal issues, etc. However, by the end I was very glad to be down to a normal dose and was thankful she had helped me do it.
I went back to Atlanta fully expecting her to look at my test results and tell me I didn't have an adrenal problem, as she'd expected, and would now have to taper completely off this medicine I had been living on for years.
It was a shock to me when she said yes, I definitely had an adrenal problem and I definitely needed the medicine--it wasn't in my head after all!
She did some more tests and I went home excited that I finally knew what to call my problem: Primary Adrenal Insufficiency, otherwise known as Addison's disease. John F. Kennedy had Addison's, and many historians think the famous author, Jane Austen, died from it back before they knew what it was.
It was such a new thing to have a "real" diagnosis. I didn't tell a bunch of people, though, wanting to wait until all the test results were in and everything was certain.
Well, all the results came in, but things were not all certain.
The doctor called me and told me she'd gotten the most recent test results back, and one important one had been the exact opposite of what it had been previously.
Which meant there had been an error somewhere, which meant . . .
(Don't give up--I know I'm probably driving you crazy not getting to the point, but this way you get a little idea of what it's been like for the past 15 years, waiting for results and wondering what they'll be!)