Wow, I happened to look at the post I threw up the other night. Interesting point: while I was posting said piece, Norman the tibetan spaniel was, in all reality, throwing up. Mr. Shoe was coming through the door with his dinner after a visit with his personal trainer, and I was in a race against time to get the barf up and out before Mr. Shoe had to see it. He doesn’t do well with that sort of stuff.
So the typos are understandable, I guess. Just didn’t imagine I’d see that many.
When you see a doctor who is willing to spend three hours with you, and work through his lunch, and he shares that he’s lost lots of weight by eating every two hours or so (not as a hint, as an incidental), I can say that he held up damn well for someone that was obviously getting cranky due to low blood sugar. But I am glad that the lab techs figured out the test that he ordered from Mayo’s “send us your tired, your soon to be poor, your patients who need weird blood labs” test facility, because I think if they’d interrupted him before he could scarf down a cookie and an orange juice, they may have needed the emergency room next building over.
At this point, the most heartening thing to take away is that there’s a guy who specializes in immunity who is intrigued and interested in following along. While I hope to hell I’m surprised and this is figured out on the order of weeks as opposed to months, I think the possibility of this going on as an unknown quantity for several more years is really unlikely. I have my ex-thymus to thank for that. Because believe me, when most doctors worth a damn hear that one, they do take notice. I mean, even if it’s “I know it isn’t the stuff that falls in my jurisdiction going on that can be related to that, but I’d be really curious to know what it is that they find…” because it all points to a screw up with your immune system (things like myasthenia gravis, are neurological manifestations, Addison’s and Graves are endocrinological, and then, of course, there’s the weird anemias and deficiencies that are associated with naughty thymus glands — all start with immune problems of some sort, or even further up the lymphatic/bone/blood production line).
The only doctor who really didn’t give a crap was the one downtown who is, oddly, also an immune guy. But before either of us knew I had the thymoma, I’d already figured out that he wasn’t worth a damn.
So as far as active impact goes: enemy sighted. Well, mostly. Battleground sighted. I am encouraged that his remarks about the fact I had no sign of auto-immunity on my labs was followed by, “And no sign of… inflammation. Oh.” Usually I hear it said as though it instantly dismisses the idea that anything is wrong — even when the doctor ordering the test saw outward evidence of inflammation (swelling, redness, heat) or when there has been evidence of infection in the same lab reports. He said it like… Well, like it wasn’t exactly normal, but that the possibility of these things occurring isn’t completely bizarre and isn’t what you could immediately call insignificant.
I still think I have a wait ahead, though. I can’t say I’m honestly holding my breath over the test results — while I feel pretty craptacular, it is not as full tilt as it has been, so even if this line of testing shows little now, it might later. There really are so few tests that are truly diagnostic, and none of the few truly diagnostic tests are for this stuff. But it gets us closer, and certain combinations of results point out directions. It is painfully slow, though, and it completely sucks to hear that I might have to wait for it to hit the fan again before we can explore further, or even if tests come back oddly, really confirm what’s going on. So I have a lot of weird, objectively measurable stuff going on, but in an area littered with diseases characterized by weird, objectively measurable stuff that it still seems as though these signs become the ubiquitous “flu like symptoms.” But at least my quirky flu like symptoms take me out of the larger “flu pool” and into the hot tub of weird, related disorders.
It’s odd, because a quarter of the time I feel like I want to skewer the medical profession, but mostly right now I feel like I am obliged to — apologize on their behalf. I get it, this is a difficult case. I am not kidding when I say (to doctors, family, friends, the street sweeper guy) that there is a lot of stuff here that on first glance makes no sense, on second look makes not a damn bit of sense, and then you really have to think about what the hell all this stuff has in common. And given the fact that immune things are slow to manifest, tend to look the same at opposite ends of the spectrum, and tests don’t always accurately reflect what it is doing at any given time beyond “overdrive” or “underachiever” and sometimes, I’ve gathered, the over/under active modes can be carrying on simultaneously — it ain’t a job I’d want.
I guess the sad fact is, there is no one to blame and for some reason, we all always want someone to pin it on. Oh, for certain, I am pissed about all the doctors I’ve seen who have been dismissive right off (and there are more than a few). I am annoyed that some had good ideas, and when they didn’t pan out, it was easier to suddenly take what information had been gathered and say that it was meaningless, and there’s nothing wrong at all. Look, I’m an adult. It is hard to hear you can’t help me because you don’t have the time, energy, or hell,interest in my case at this point. But if it’s the truth, tell me. Because it’s better than hearing I’m fine when we all know I’m not. And it takes some real faith in yourself as a human being to say it to a patient, I’m sure. But I’ve heard it was in my head way too many times when it was clear that even the doctor saying it didn’t believe it.
But even though the journey thus far has felt way too long, and isn’t over yet, I can’t say any of it is necessarily the failing of the medical profession. In a perfect world, with every doctor having oodles of time, and getting paid oodles of money, and insurance not being an issue ever for anyone, this would still happen to some extent. All else aside, we don’t know nearly as much as we think we do. So I say we fund science and technology education at all grade levels and encourage more college kids to pursue careers in research. Some sort of answer, with some sort of solution is out there for me, and I will get there. Of course, I’ll send you all a postcard when I do.