I haven't updated my blog since right after my crisis, so that would have been in Nov. There is not a lot to report. Not good stuff anyway. All of my Cushing's symptoms have returned! I can't think of one that I have not had come back.
I've gained about 35 lbs. since Nov.! Talk about frustrating! With 10 more lbs., I'll be where I was when I went in to have my adrenals removed! Every bit of progress I made has quickly faded away. I'm back at square one, only it's a bit different. This time, I have no adrenals, with all of the same symptoms. All of these symptoms went away for about a year. The weight loss took a while to kick in (I think 3 or 4 months). Once I started losing, I lost pretty quickly, but the weight loss stopped at 7 months. I was able to maintain my weight for close to a year, as the symptoms slowly began creeping back in.
With my weight holding steady, I could blame the symptoms on something else. I really didn't think I could have rest tissue (regrowth of tissue where the adrenals were removed). As time went on, more and more symptoms came back. Hormone labs looked good, so we couldn't blame any symptoms on any of that! My good doctor in California said I needed to test, because he had no idea what else would make these symptoms come back. The good part is, he got to see it first hand in his office. My face was swollen that night, and flashed red, while I was sitting there talking to him. It randomly does this, and I don't know why. It did it all the time when I had Cushing's. It went away when it appeared I was cured. It came back with the other symptoms.
I have done some testing. Most of it, I send to California. I forgot to add my fax number, so the lab is holding my reports hostage! There are a few local ones that I need to pick up. The only result that I did pick up local that showed something was a 17-Hydroxycorticosteroid reading while on Dexamethasone. Dex is not suppose to show up in our testing. A friend of mine has rest tissue and she doesn't get anything to show on this particular test. I usually had good results with that test in my previous testing. The thing now is, I have no adrenals, so I shouldn't be producing cortisol at all! Nothing detectable.
I know that I am still cycling. I've been on 10 mg. of hydrocortisone for over a year. That's not much for someone with no adrenals. I've been lower too, and did good. I went back up to 10 though because I was working so much, I was afraid of having a crisis. That's another tell tale symptom.... working like crazy, but gaining weight. Anyway, when I'm on the hydrocortisone, I can tell the cycles more than when I'm on the dexamethasone. For some reason, dex seems to even me out more. I still cycle on it though. I have periods where I am all energy, working like crazy, breaking out in zits, and others where I hurt all over, and can hardly move! I have times I can't seem to get enough sleep, and other times I don't sleep but a few hours a day. My sleep cycle is a mess again. I didn't have to deal with this during my "cured" period after surgery.
The brain fog is really bad again. The emotional aspect of this disease is bad! Some days, I feel chipper. Other days I feel blah. Still others, I feel downright depressed and end up crying. I'm so very tired of this disease. I wish it would leave and never come back. It was bad enough to face my kids having the same disease, but even worse now that I'm going through all of this again!
My mind goes in so many directions. If my kids are left to progress through this disease, they will be as bad as me, for sure. They are worse than I was at their ages. The part I struggle with is this. They aren't "THAT" bad yet, and I worry that they will face recurrence after recurrence like me. I worry what this will do to them in the long run. How will they be able to function as adults. I don't function very well, and even at my best, in the "cured" state, it still had limitations. I don't think you ever fully recover from this disease. You can feel 100% better than you do with the disease (I've been there), but not feel 100% like you never had a disease. The damage it does is often permenant. You have to live the rest of your life with those problems. I'm really scared of sending the kids through surgery, and have them come out on the other end of it feeling worse than they did going in. There are people who feel like that. It's great when you get cured. When you don't, not so much. It's something we have to do. We have to take the chance at getting cured. I know that. It's a much easier decision for my own body, than for my kids'. It's a decision I don't want to have to make. I really don't want to wear big girl panties any more!
If you think of us, say a prayer for our family. We surely need it.