Victory #1

Today I walked a mile on the treadmill. It took me 25 minutes, but I did it. This is the first standing-up exercise I’ve done since May.

For perspective, remember that I used to walk/jog three miles a day in about 40-42 minutes six days a week.

I am going to go lie down now.


The Answer is Sort of Inconclusive

Just wanted to give the quick update after my endocrinologist’s appointment yesterday. The first thing he said was that none of the test results provided any insight into my fatigue; he said he had “no endocrinological explanation” for why I’d been so sick.

He said the test results showed that my thyroid, pituitary, and adrenal functions are all fine. This means I do not have the two things he had conjectured were possible, subacute thyroiditis or Addison’s Disease. He also said I do not have Late Onset Congenital Adrenal Hyperplasia or LOCAH, something that I had been diagnosed with in Michigan, a diagnosis that had been arrived at without a couple tests that he said were crucial. He ran those and determined that my adrenal function is fine.

What he did say I have (which had been misdiagnosed as LOCAH) is Polycystic Ovary Syndrome, or PCOS, and in conjunction with that, Impaired Fasting Glucose. IFG used to be called pre-diabetes. He said this puts me at risk for diabetes, though it doesn’t mean for sure that I’ll get it. He also said that my diet, healthy weight and (usual) exercise regimen were the best things I could be doing to keep diabetes at bay.

So as to the incredible fatigue and the lingering malaise? He said he thought I had gotten a really bad virus, something on the level of mono or Epstein-Barr (though we were able to show it was neither of those, since we tested for them).

It is good to know that my endocrine system is fine, but I admit it’s quite frustrating to hear “virus” and know that there’s really nothing I can do for that but continue to slug it out with whatever it is. He said that he could send me to an infectious disease specialist, and then said that there are three infectious disease specialists in town, that one of them deals almost exclusively with AIDS patients, and that he didn’t want to send me to either of the other two.

So I am going to keep on keeping on as best as I can each day. Thanks again for your sympathy, attention, and patience throughout this ordeal.

The Tests

Okay. Tests were today. A Great Deal of Blood was removed from my body. What was nice about this round of tests was that the ACTH test necessitated an IV, so there were not multiple pokes – they put in the IV, take blood, give you the Cortrosyn, then take blood a half hour later and an hour later. The crummy part was how much blood was needed. She told me beforehand that she needed a lot of blood, but didn’t say exactly how much. It turned out that the first time she drew, she took six tubes. Not the little ones either. I was laying there, trying to be calm, when all of a sudden I got that hot all over/instantly sweating feeling that (thanks to my flu shot last year) I now know precipitates me passing out. Michael said that was around tube four. Even he was worried about what the removal of two more tubes was going to do. I don’t know if she was trying to get it out fast or what, but I felt pretty awful there for a few minutes. The nurse did a great job, by the way – she was the matter-of-fact type and I felt like apologizing the whole time. I did apologize a lot, praised her technique, and thanked her for her patience.

The puncture is always the worst part – the EMLA helps a great deal on keeping me from reacting to it. I know how the procedure goes when you have blood drawn, but there must be something different about putting in an IV. She cleaned my skin about six times, I think. I don’t know what the whole succession of things were, but I kept thinking, okay, now my arm is clean and I try my best not to shake while she takes aim at my (thankfully very prominent) vein. Okay, now my arm is clean. Okay, how many things is she going to swab on my arm? Eventually she did do it, and I think it hurt less than a typical blood draw going in. This is the first time I have had an IV while awake – the last time was when I had my wisdom teeth out when I was 20, and I had taken a tranquilizer beforehand, so I don’t even remember it.

I stayed flat on my left side through the whole hour, and kept my arm (and all the implements on the cart) out of my line of sight. If I don’t have to look at it, it’s all a lot easier. This is the technique taught to me by Dr. Goldstein, my childhood dentist, who always seemed to shine the light right in your eyes after he reclined the chair. It made you close them, which meant you didn’t have to look at the scary stuff. This is why I don’t fear dentists. Go Dr. Goldstein.

So I felt a little sleepy about halfway through, but who knows whether it was just that I was allowing myself to relax somewhat after getting myself all worked up, or whether the Cortrosyn was actually doing something. At some point, Dr. Hawkins came in to say hello and apologized for taking so much of my blood – he said he wanted to get as many tests done at once as possible. Very good, I said, I’m really looking forward to seeing what this tells us. He said not to assume that it would give us all the answers, of course, and I’m not, but I’m happy that something is being done to work on figuring it out.

I brought my shredded wheat and soymilk with me, so I was able to eat before going home, which was helpful. I felt very weak afterward, and I still don’t feel quite myself, but when have I felt myself lately?

Michael and I figured out (mostly Michael, who was able to look at what was being done and also able to think clearly, not having had so much blood removed) that I probably had half a unit taken. This proves to me that I should probably not give blood, not that there was much danger of that up to this point.