Okay, so. The system that brings me my sleep-hack medication is so convoluted that its inability to reliably deliver treatment for my condition automatically renders any commitment I might make into something tenuous, dependent on numerous circumstances I can't control.

Walking through it... )

The upshot of all this is that every thirty days, my ability to Person is left hanging by a thread, and I'm furious that all the interlocking systems are okay with that.
403: Reduce - Reuse - Reanimate (Reduce - Reuse - Reanimate)
( May. 7th, 2016 06:30 pm)
After learning in mid-March that my liver was markedly unhappy after six-ish months of danazol, I decided to give the Mirena IUD a try. Cut for medical content. )

Being poked and prodded for the ultrasound has ratcheted my pain level up to the point where OTC medications are not adequate, and it's lingering.

All I wanted when this saga started was to experience less pain, goddamnit.
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The writeup has been lingering half-written in a tab for a while, and I finally finished it off because I need to reboot. Here it is.

Cut for medical discussion. )
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As of yesterday afternoon, I have a "transition" refill of sleep-hack medication. W00t!

I'm still all kinds of tired, from the time on half-rations. That will take a little while to resolve. Appointment with sleep specialist to get things properly moved over to new health insurance is tomorrow morning.
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403: Reduce - Reuse - Reanimate (Reduce - Reuse - Reanimate)
( Mar. 5th, 2016 07:00 pm)
Sleep disruption is a migraine trigger. (And sensitizer to other triggers.) Apparently halving my dose of sleep-hack meds counts as 'disruption'.

There went today.
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Due to doctors' offices not being able to get their shit together enough to transfer my records (even after I did the voodoo dance to get them to actually talk to one another!) in a timely manner, the window of opportunity in which I could have a doc-appointment and get all the insurance garbage out of the way in time for a refill of my sleep-hack medication to ship to me before I ran out has closed. Launch postponed. Houston, we're screwed.

I'm stretching the amount I've got left by rationing it at one dose per night rather than the usual two. Which is why I've been up for nearly two hours and have only 5h of sleep behind me. Unmedicated, my sleep is located at random times throughout the day, in intervals of 2-4h, and has around 50% of full efficiency. (So to feel similarly alert during the times when I am awake, I now expect to need somewhere between 10 and 12h. My normal requirement is 7.5h.)
403: A rack of test tubes with the caption "If you're not part of the solution, you're part of the precipitate". (Solution or precipitate)
( Aug. 20th, 2015 03:40 am)
So, uh. I lost the week of 8/2 to medication-induced depression. Unfortunately, the med in question was for management of endometriosis symptoms. So I also lost the following week of 8/9 to the pain resulting from no-longer-controlled symptoms. When told what was going on, my doc promptly sent in a prescription for acetaminophen + oxycodone, and having the option of proper pain management was a really nice change. But it isn't long-term acceptable because my primary narcolepsy medication is not compatible with opiates under any circumstances, ever. So I had the options of taking sleep-hack medication & waking up from pain, or taking adequate painkillers and having neurologically dysfunctional (therefore non-restful) sleep. Neither leaves me able to carry on normal activities, and this past week I determined that alternating them doesn't either.

On Friday of last week (8/14), I started the next round of treatment things. 400mg/day of danazol counts as a 'moderate' dose and is supposed to switch off my ovaries entirely, without the nasty side effect of osteoporosis. (Instead it has the nasty side effect of, if you're on it for long enough, eventually trashing your liver. But since when is that new?) The normal course of use is up to 9mo, after which most people are free of symptoms for a year or two, and some lucky proportion get longer than that. I should be reaching steady-state on it by the end of the week, and we'll see how things go after that.
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403: Red-ink fail stamp. (FAIL)
( Aug. 7th, 2015 03:02 am)
Took today as a mental health day; not doing appreciably better at the end of it. Just going to have to hope that tomorrow is magically better somehow.

I've been on the new OC for 27 days, now, with no break for dummy pills. There's enough else going on that it's not yet evidence of anything, but experience suggests that'd be the prime suspect.
..but I decided I'd rather write about cherries, instead. So I'll do the other thing, now.

First up, sports-surgeon:
* X-rays say that I'm healing up good, but I still shouldn't descend stairs in the normal way (reach-with-toes) because taking a step like that puts stress precisely on the fracture site.

* I most likely have a bone bruise right at the sacro-iliac joint (the join of spine and pelvis), and those take their time about healing. I'm to go easy on it for the next month or two, which is going to mean accepting some functional limitations. (I'm not good at this, but the choices are 'try anyway' or 'be in gratuitous extra pain', so.) If it's still giving me trouble at the eight-week follow up appointment, that will be worth investigating, but not until then.

* Got properly referred to physiotherapy, so that my insurance will pay. Eval appointment is Thursday. (Err. 11 hours from now.)


Then there was my GP:
Me: [Augh, symptoms.]
Doc: "You probably have endometriosis, but I'll order an ultrasound to make sure."
Me: [knowing that it doesn't image well] "Huh?"
Doc: "If we don't see anything out of the ordinary, it's almost certainly endo."
Me: "...Oh. That makes sense."

* Upshot is that I have a continuous-dose prescription for a new OC. We'll see what it does for my pain levels. (And conversely for my depression symptoms, since it's using a different progesterone-mimic.)

Fun stuff. And now, sleep.
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Oh, right. I fed them to PubMed and the NCBI digital bookshelf because being mobility impaired is keeping me from doing most useful things. I'm restless and frustrated as a result.

It's difficult to keep myself reined in and not go back to normal activities where I'd risk re-injury in the attempt. Last night I tried to put away my own groceries and my body forcefully informed me that bending my left knee that much was not going to happen.

One more week until X-rays and check-in.
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Good: I do not need surgery. The sports-doc estimates that I'll need the brace for another week, and crutches until two weeks from now. I'm due back in a month for follow-up X-rays, at which point I can hope to be pronounced 'recovered'. In the mean time, I have a renewed script for pain meds. Thank fuck.

Bad: Being poked at and having my knee wiggled out-of-plane to reach those conclusions left me hurting worse than yesterday. I already had problems with stress from out-of-plane bending on that knee, thanks.

Ugly: Opiate painkillers are effective and addictive in equal measure. I'm watching myself carefully because the animal part of my mind is smart enough to get us into trouble, but not enough to get us out of it.
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403: Reduce - Reuse - Reanimate (Reduce - Reuse - Reanimate)
»

Ow.

( Jun. 8th, 2015 11:29 pm)
Today I got poked and prodded and X-ray'd some more. The doc I saw this time was more informative than the ER staff, probably due to not juggling a dozen or more patients at once.

The specific problem is that I have a vertical fracture through the head of my fibula. It's "minimally displaced", which is good. Doc is optimistic that it will turn out to be stable without further intervention, but still wants me to go back tomorrow (11h from now) to see the sports-medicine surgeon who's in a couple mornings each week. Between them, they'll decide whether I need the broken bit surgically reattached to the rest of the bone to make it hold still and heal.

Today's exam has left me quite sore. 9h after getting home, I'm still needing extra painkillers to do anything besides lie here and hurt. So I'm not really looking forwards to the next one, even if the result is likely to be good.

All this has got me thinking about how I'm never sure how much pain one is expected to be able to tolerate. If we're going for functionality targets, there's a pretty big difference between what I need in order to reach 'able to do most basic self-maintenance if provided with ample distractions in between', vs. 'able to produce in-depth analysis of X.' - The latter being my bread and butter; the former being where I'm at right now. (Aside from which, it's disturbing to be left clinging to a rock rather than swimming in the ocean of data that I call home. Am I beyond the low-tide line? Will there be a hospitable tide pool to limp to if I am?)

At any rate, I have to get up early for that appointment. Goodnight, Dreamwidth.
0) My mom accompanied me to a brain-adjuster appointment at awful o'clock in the morning (the only schedule slot that all parties could arrive for). It was Good and Useful.

1) [livejournal.com profile] zeightyfiv became Dr. [livejournal.com profile] zeightyfiv.

2) Departing after the ceremony, I tried to circumvent the traffic jam on the stairs and instead fell + slid down five rows of auditorium seats. Injured right wrist, lower back, left shank.

3) The following 6.5h were spent at the ER, during which I had a total of 12 15 X-rays taken. They probably could've left off the last set, but the orthopedist wanted to look at my right ankle to compare with the left.

4) I was discharged around 21:00 with diagnosis of a minor fracture at the top of my left fibula. I have a straight-leg brace, crutches, and instructions not to bend my left knee until my orthopedics follow-up in a fortnight. Shall be seeing my GP far sooner than that, though, because the prescribed pain meds are utterly insufficient for that span of time.

5) I am home and medicated. Sleep now.
403: Listen to the song of the paper cranes... (Cranesong)
( Nov. 2nd, 2014 05:56 pm)
I keep meaning to update, but then before I'm done composing a post, more stuff happens. Going to change strategies and just hit the most important high points.

* Around the beginning of summer, I was diagnosed with narcolepsy. Suddenly the excessive difficulty of the last two-ish years made sense.

* I'm trying out a medication for it - so far, so good. Still feeling tired all the time, but it's an order of magnitude less than before. I can do stuff, now, and I'm actually interested in doing it.

* In line with that last bit, if all goes well I should be getting my B.Sci in May. Finally!

So yes, there's a thing. Hi again, everyone.
I've had what appears to be the common cold for just about exactly a month, now. My dysfunctional asthmatic lungs, further irritated by the sub-freezing Boston air, can't kick it out. A week ago, I started trying to damp down the inflammation with my seasonal steroid inhaler. It couldn't keep up, but the only changes in symptoms were progressive exhaustion... and I stopped wheezing. I was initially naive enough to think that was a good thing. Oh so not.

I landed in urgent care Friday morning, with symptoms that were apparently minimal until I started coughing. Things I don't want to hear a doctor say again: "You're not wheezing... Oh. You're not moving enough air to wheeze."

They gave me four rounds on a nebulizer (another way of aerosolizing medication), which turns out to be intensely dislikable. Oh, and a chest X-ray. There aren't words for how happy I am to not also have pneumonia on top of it all. They sent me home with a bottle of prednisone, which is the 'stop that right there!' of steroids for suppressing immune response. I "should" start seeing the positive effects today. Still waiting...

Also got a peak flow meter, the relationship of which to my oximetry readings I'm still trying to figure out.

So far, so good? But God I'm tired.

[ETA 01:49, 2/10/2014 - Prednisone does seem to be having an effect. The little airways are synched up better with the big ones, rather than delayed (and making crackly-bubbly noises) from being nearly closed off as they were before. It's not magic, but it's something.]
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[livejournal.com profile] zeightyfiv and I fly out to Seattle in a single-digit number of hours. He's got some sort of stomach bug, which has knocked him flat and left me responsible for ~2/3 of the setup that needs to be arranged before we depart. In the past two days, the longest continuous period of sleep I've had was three hours, and it ended at noon today.

As soon as we board the airplane I'm going to wrap myself in a shawl, pull my head under it, use my crochet bag as a pillow, and not come out until the plane lands.


Oh, right. This past Tuesday, final X-rays showed that I'd healed enough to resume full normal activity. If I was still having trouble walking, we'd already be SOL.
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403: Fractal of nested rainbow curves. (Edges)
( May. 22nd, 2013 04:27 pm)
[livejournal.com profile] zeightyfiv ferried me to campus via zipcar, since the nearest bus stop to our apartment is roughly a third of a mile away and getting there on crutches wasn't going to happen. Despite assorted communication failures between the professor and I*, the exam was taken and I think I did alright.

Being on crutches seems to make everyone automatically extra-nice. Complete strangers keep asking if I need help. It's... a little bit weird, really.

Regardless, standing in line at the cafeteria was agonizing. My good leg was complaining about being overworked before I got in there, and so were my wrists. I'd like to go home and cancel everything forever the rest of the day so that I can hide under the covers.



* "How are we going to communicate?" she asked, in her thick Hindi accent. "The evidence says 'badly'," I replied.
403: Red-ink fail stamp. (FAIL)
( May. 19th, 2013 12:24 pm)
On Friday, I missed the last step or two of a set of stairs and met the ground with great emphasis. Long story short, I'm glad that I let myself be convinced to go get X-rays, because I turned out to have a minor fracture in my right ankle. I have a brace, crutches, and pain meds. I have no prior experience using crutches, and learning has made for Interesting Times. It's something of a triumph to have managed to shower on my own this morning.

And now you know. I'm off to sleep some more.
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I don't know if it's the weather, a cascade effect from ordinary "earned" aches being worse than normal this week, or something else entirely. Whatever it is, right now I'm uncomfortably aware of joints that I normally don't even remember that I have. OTC painkillers take the edge off, but that's about it. (I'm currently rotating among acetaminophen, aspirin, and ibuprofen, so that I don't get too close to the maximum dosage of any of them. Checked for negative interactions first; none are known.)

What's to be done about the rest of it? )
403: (The Human Condition)
( Feb. 3rd, 2012 02:13 pm)
I've been trying to adjust from my native schedule (sleep 02:00-10:00) to one compatible with this semester's classes (sleep 23:30-07:30). It hasn't been going well, so I've spent the past two weeks chronically sleep-deprived. Now the inevitable has happened and I've got the cold that [livejournal.com profile] zeightyfiv brought home.

Day 1 - Sore throat, leaden fatigue.
Day 2 - Sore throat, fatigue, joint aches, vertigo.
Day 3 - ???

I can't decide whether the vertigo is irritating or entertaining.

In the mean time, have a link: The Fibershed Project is really cool. If you like crochet or knitting, you should check it out.
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