After my last entry on Tuesday night, I woke up in surprisingly little pain. Fret not, though, for there is always something to write about.
First off, I’m such a regular at our hospital now that the ultrasound tech knows me by name, the phlebotomist knows me by my voice in the waiting room, and the front desk receptionist knows me on sight; I’m so amused. “You know you have a chronic illness when…”
Wednesday was my appointment with an Internist/Infectious disease specialist. He’s primarily an HIV specialist, but at the request of my primary doctor I went to see him to get tested for any viruses that could be playing a role in my immune system being so overwhelmed. I’ve only been tested for viruses when I first fell ill with the M.E., and that was just to see which pathogen had caused that fateful infection which triggered the disease. Since then, I haven’t been tested for any viruses except influenza during my Christmas Eve ER visit last year.
He only ended up sending me for a bunch of random blood tests, most all of which I’ve already had: things like CPK, ANA, Sed rate, and immune system panel to check on my eosinophilia, which he seems very interested in. The “real visit” as far as I’m concerned isn’t going to be until two weeks from now when he wants to see me again. He apparently wants to rule out other things first (but I’ve already done this; that’s why I ended up at your office!) instead of just straight out testing me for obscure viruses. So right now the only infections he’s testing me for are HIV and syphilis. I’m actually unnerved, because…
Okay, I could possibly have XMRV, and I already have Lyme, so my paranoid brain is thinking, “Oh crap what if they cross react and give me a false positive?!?” I mean, if syphilis can cause a false-positive on a Lyme disease test, why couldn’t Lyme disease cause a false-positive on a syphilis test?! And we have no idea what impact XMRV could have on other retrovirus testing, and HIV testing simply uses a western blot and is notoriously bad… What else could happen???
But anyway, when all the other stuff comes back negative like it always does, then we’ll see what he does with me. In the mean time he wants me to see an ophthalmologist because of my retinal migraine attacks. I agree with that, of course. He described me in his very long report (he spent at least an hour with me!) as a younger female with autonomic dysfunction, tachycardia, and.. something else I was unable to hear because a huge semi-truck drove by outside. But he was very kind and patient, and seemed to want to figure things out, which I appreciate… I just hope him being an infectious disease specialist doesn’t automatically make him into a “it has to be this way or nothing” kind of doctor. :\
Wednesday in general was really, really bad. I should have known things weren’t going in the best direction when I woke up and needed my oxygen after only an hour. My POTS symptoms were also very exacerbated, which of course greatly contributed to my poor oxygen uptake. From the car I made about a forty foot limp to the hospital entrance before I collapsed in their doorway, being unable to breathe and my leg muscles having failed. They quickly brought me a wheelchair for the remainder of my stay. However, I probably could have avoided the collapse had I outright requested it when I first stood up and knew “this is bad,” due to my legs feeling so severely weak and having sporadic contractions/spasming. I also began having dystonia symptoms in the middle of the day (including in his office), which is unusual, since they usually occur later in the evening…or when my oxygen is low. But by that evening, things had gotten progressively worse. “It” was also happening again, and by “it” I mean when I dehydrate extremely quickly for no apparent reason. (A rant on that in a moment…) As soon as we got home I went into a fight mode, double dosed all of my electrolytes, had upwards of 40-50 ounces of fluid, took my Co Q-10 supplement, and did not move. I even slept for two hours. It seemed to be enough to keep me from another emergency room visit.
I feel.. relieved, that it has passed. I was so nervous about this end of the month, because the past few weeks I’ve had multiple signs that things were aligning for a pretty bad incident to come… And yes, it did happen. The “multiple-infection flare” that tries to bring me down every few months, it seems, when two or more of the things I have within me coincide and my body just can’t handle it… But I won this time! (Around December 24th: Hospital / Around July 24th: Hospital / Novemeber 24th: NO HOSPITAL! :D)
But, right. For years I’ve had a terrible habit of dehydrating at the drop of a hat–I even mentioned this to my doctor that afternoon!–even though I do drink enough fluids and in fact have had to start supplementing every single day with all of my electrolytes (calcium, magnesium, potassium, sodium, etc.). They do help immensely. But I often wake up, having seemingly dehydrated overnight. And I don’t mean, “Hmm, I’m really thirsty, perhaps I should drink more fluids.” I mean, “Uh oh, my muscles aren’t responding normally and I can’t sit up and I can’t breathe and I think I need to go to the hospital again.” This time… I don’t even know. I honestly thought being off of caffeine would prevent these episodes, I really did, because it’s the only factor that I can control, that has been present during these “attacks.” But it’s obvious now that it’s nothing I’m doing. I haven’t had caffeine in two weeks because of the Sporanox, and yet it STILL happened. I mean, yes, there’s a little caffeine in my Fioricet, but I take half a tablet, and that’s the equivalent of drinking three guilps of coffee per day, and I don’t care who you are, that’s not enough to invoke spontaneous, rapid dehydration. Why I don’t get any warnings is beyond my comprehension. I wish I knew that this happened to someone else; I’d feel a lot better just knowing this isn’t just a random quirk of mine that can’t be helped.
♥ a rainbow at night