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News update...
Aug. 5th, 2014 07:52 amSo - I saw a neurologist. He was doing a big, scattershot approach. I'm a tiny bit peeved that he's all "you said you feel your case is hopeless, but then you come to me and I'm going to test you for everything, as if you hadn't ruled these things out." But - better a scattershot approach than a "it's not something I see in my specialty so it's nonexistent". And I like him - he seems to feel it would be a personal affront if he can't figure this out. Well, good. He might well end up either as frustrated as other docs, *or* might be the lucky one because TLE or something similar *is* what I actually have. But at least he's not going to walk through the motions, just another cog in the machine, and say that everything's okay, maybe I should see a psychiatrist.
(That is one of the next steps - but the goal is avoiding deep depression, not actual, you know, *relief*. In my less hopeful moments, I'll confess there's a part of me that wants to skip this step. (Those of you who understand these things can probably figure out what that means in a few seconds. The rest of you... probably don't want to try. Seriously.))
I got some blood work to recheck hormone levels and B12 (I'm sure these have been done before) a suggestion for a sleep study (probably going to skip - I could be having a really good day, feeling awake and alive and then an hour of gentle exercise leaves me suddenly much worse off, how the heck could that be apnea? but it might be time to put my pride in my diagnostic guesses to rest and rule the damn thing out), and orders for an MRI, a regular EEG, and a four day EEG.
I got through another MRI - I'd forgotten that they're full-body jobs, but one side effect of constant fatigue is a moderate tolerance for dropping to a lower state of consciousness. I kind-of napped, I know they were playing good music to me, I remember thinking several songs were great rock classics, but darned if I could remember more than a couple after the exam - and none, now.
And then - the 31st rolled around, and I had to get new insurance. And I'm starting to understand the frustrations of a new bureaucracy.
The website for the health exchange wouldn't let me shop for insurance. I was *insured* and open enrollment was *closed*.
(For those of you living in civilized countries, and those who don't know the new law in the US: the Affordable Care Act allows you to buy insurance without a pre-existing condition exclusion. Now, since the penalty for not having insurance is pretty tiny, there's a reasonable fear that a person goes in for the first checkup in a few years, and learns, wow, they have high blood sugar, or even has a case of "damn, this heartburn is... radiating to the left, crap!" and *now* they buy insurance. This means, rather than paying some insurance money each month, they only pay into the pool when they suddenly are getting a lot more in benefits than they are in premiums - and that makes the costs rise if enough people do it, so that fewer people can afford it, so more people do it, etc., in what's called a "death spiral," and not entirely inappropriately.
So they reduce the chance of this happening by allowing you to buy it only during a relatively brief open-enrollment period each year. But I'd lost a type of insurance coverage called COBRA (alas, nothing exciting in that name: it's C(something) Omnibus Budget Reconciliation Act). That makes me eligible to purchase out of the open enrollment period. I checked, very carefully.)
Where was I? Oh, yeah, getting screwed.
Well, see, if you pay your premium after the 23rd of a month, you can't get insurance on the first of the next month - you have to wait for the first of the month after that.
And when I called the support line to point out that this is completely fucking insane (no apologies for language here - this is completely fucking insane, not merely "completely insane") I was told I should have called in earlier, they'd have worked something out.
I *DID* call in earlier, and was told there was no way to do anything! Can't buy insurance until I'm actually uninsured, and if I wait for that, I can't buy it until a month elapses!
So now I'm waiting while a case winds its way through the bureaucracy, uninsured in spite of doing everything right to the best of my ability. Sigh.
On the plus side, I have a new espresso machine. I'll review that later. But I wish I had some good Irish whiskey to lace it with. No, not really - that's for coffee, and this machine makes espresso too fine for adulteration.
(That is one of the next steps - but the goal is avoiding deep depression, not actual, you know, *relief*. In my less hopeful moments, I'll confess there's a part of me that wants to skip this step. (Those of you who understand these things can probably figure out what that means in a few seconds. The rest of you... probably don't want to try. Seriously.))
I got some blood work to recheck hormone levels and B12 (I'm sure these have been done before) a suggestion for a sleep study (probably going to skip - I could be having a really good day, feeling awake and alive and then an hour of gentle exercise leaves me suddenly much worse off, how the heck could that be apnea? but it might be time to put my pride in my diagnostic guesses to rest and rule the damn thing out), and orders for an MRI, a regular EEG, and a four day EEG.
I got through another MRI - I'd forgotten that they're full-body jobs, but one side effect of constant fatigue is a moderate tolerance for dropping to a lower state of consciousness. I kind-of napped, I know they were playing good music to me, I remember thinking several songs were great rock classics, but darned if I could remember more than a couple after the exam - and none, now.
And then - the 31st rolled around, and I had to get new insurance. And I'm starting to understand the frustrations of a new bureaucracy.
The website for the health exchange wouldn't let me shop for insurance. I was *insured* and open enrollment was *closed*.
(For those of you living in civilized countries, and those who don't know the new law in the US: the Affordable Care Act allows you to buy insurance without a pre-existing condition exclusion. Now, since the penalty for not having insurance is pretty tiny, there's a reasonable fear that a person goes in for the first checkup in a few years, and learns, wow, they have high blood sugar, or even has a case of "damn, this heartburn is... radiating to the left, crap!" and *now* they buy insurance. This means, rather than paying some insurance money each month, they only pay into the pool when they suddenly are getting a lot more in benefits than they are in premiums - and that makes the costs rise if enough people do it, so that fewer people can afford it, so more people do it, etc., in what's called a "death spiral," and not entirely inappropriately.
So they reduce the chance of this happening by allowing you to buy it only during a relatively brief open-enrollment period each year. But I'd lost a type of insurance coverage called COBRA (alas, nothing exciting in that name: it's C(something) Omnibus Budget Reconciliation Act). That makes me eligible to purchase out of the open enrollment period. I checked, very carefully.)
Where was I? Oh, yeah, getting screwed.
Well, see, if you pay your premium after the 23rd of a month, you can't get insurance on the first of the next month - you have to wait for the first of the month after that.
And when I called the support line to point out that this is completely fucking insane (no apologies for language here - this is completely fucking insane, not merely "completely insane") I was told I should have called in earlier, they'd have worked something out.
I *DID* call in earlier, and was told there was no way to do anything! Can't buy insurance until I'm actually uninsured, and if I wait for that, I can't buy it until a month elapses!
So now I'm waiting while a case winds its way through the bureaucracy, uninsured in spite of doing everything right to the best of my ability. Sigh.
On the plus side, I have a new espresso machine. I'll review that later. But I wish I had some good Irish whiskey to lace it with. No, not really - that's for coffee, and this machine makes espresso too fine for adulteration.
