Days of Shades

Monday morning when I got up my arms, and then my whole body, started shaking and twitching involuntarily. This happened spring of 2016, too, right after I upped a med dose. That time I guessed/assumed it was a reaction to the drug dose being raised, talked to the specialist who'd prescribed it, and weaned it out of my regiment, which worked. It took weeks of shaking before whatever-it-was cleared my system. Fun times.

This time I hadn't really changed anything in my drug regimen recently, so I called my general practitioner, who made me a very last minute appointment after I told the nurse that no, I was NOT going to call 911 for something that had already happened once and notably failed to kill me. I'm very glad I went to see him, because it turns out it's serotonin syndrome which, er, can kill people. Oops. Makes me feel a bit bad for being so flip, but here I am, still not dead, so that's cool.

The trick is that I'm not 'reacting' to any particular drug; the anti-depressant plus the drug cocktail I'm on to try to control the auto-immune itching results in raised -- and at this point toxic -- serotonin levels. At the doc's office I had a high-for-me blood pressure and pulse, a fever so slight I hadn't noticed it, and dilated pupils. I suspect I should be grateful my basis level BP and heart rate are low; there's room for a big surge without it being dangerous.

Anyway, I have entirely cut out an OTC antihistamine that's the only thing new in the last month, cut the anti-sad drug by a third, and am titrating down on one of the anti-histamines-that-is-also-an-anti-depressant. Of course, that means i'm just waiting for the moment when I itch all over again. So far it's not too bad, though -- we discussed it, and while gabapentin might be contributing to the serotonin syndrome, I'm staying on that one for now. It's done the most to control the itching (which suggests neural rather than allergic response, fun times).

I quite enjoyed staying at home yesterday, but I'm really tired of being a chemistry experiment.

 To recap: Mom and I had blood tests run because my little brother was just diagnosed with celiac, and it's genetic.

I got a call from the nurse saying my results were clean (Yay, CAKE!) yesterday, and mom didn't, so neither of us were surprised this morning when she was told her test was positive. The test they ran does throw false positives, but it seems likely she has some level of gluten intolerance, and she has to move up to the next stage of testing.

(She also wants me to go back and cajole the doc into testing for iga deficiency, because the test we had doesn't work with that. I'd be inclined to leave well enough alone, but mom has also offered to foot the bill.)

It's all rather exciting because I can still have cake since it's offering a chance for significant improvement in quality of life for my brother, who desperately needs some kind of break, and now possibly for my mom as well -- who isn't suffering acutely from anything but a serious overdose of my brother, but does tend to get sick more than the rest of us, need more naps, and have chronic canker sores and occasional anemia.*

Potentially less irritable mom added to who-knows-how changed brother could be an amazing, amazing thing, guys.

*Actually, anemia is one of the reasons I feel weird getting tested for antibody deficiency. Mom's decided that I MUST be tested for anemia at least three different times in my life. I've never had it. It's a projection sort of thing apparently based on the fact that if I was away at college she didn't see me changing from summer to winter plumage and the result was startling pallor. :P

This morning mom and I went in for blood draws (together. Yay mother/daughter bonding :P). Yesterday, my brother was officially diagnosed with Celiac. We'd been fairly certain he had it -- he'd had the blood work and the endoscopy in November or December, but he couldn't go in to get the official diagnosis and doctor's interpretation of the numbers until January because of *waves hands vaguely and mumbles something about insurance*. Apparently his antibody numbers were off the charts.

So, my brother has celiac -- and looking back, probably has had it all his life*. A lot of the things he's dealt with -- seizures, anxiety, depression, irritability, learning issues, anemia -- may either be caused or exacerbated by this disease no one ever thought to look for, because there were so many other, obvious things to worry about and/or blame. As an infant who'd survived massive open heart surgery, everyone was just glad he was alive. When various issues seemed to get worse rather than better with time, he had MRIs done, which showed stroke-like brain damage that probably occurred in infancy, pre-open-heart-surgery. The ADHD meds to deal with learning issues can cause irritability and stunt growth. Mom and I both have depression and it clearly runs strongly in her family. There were already loads of causes to blame -- you can see why one might never think to look for anything else.

The diagnosis of Celiac is kind of exciting, because it's something that you can actually improve. Not that I assume the diet will improve everything, or be some kind of magic fix, but any thread to pull in this mess is a Good Thing.

...we'll just try not to dwell too much on how different he might be if he hadn't been effectively malnourished for 26 years.

So, that's the news with my little brother, and the reason my mother is vigorously de-glutinating her kichen -- which is highly entertaining to watch**. The reason we had blood drawn is that it's a genetic condition, and can be a apparently symptomless while still causing long-term damage. If a first-degree family member has it, getting screened yourself is wise.

Mom wasn't going to get screened, since she's going gluten free anyway to help bro, but when she demanded I get screened I said "Okay, if you will."

And that's how we ended up carpooling to the doc's office today to have a mother/daughter blood draw that managed to amuse the phlebotomist so much she ended up in stitches.

Now we have a few days to get results back, and then we can see if either of us has to go for step B (invasive diagnostic procedure). If that's positive... well, mom's going GF anyway, and I'm not too worried. I have A Plan.

It is a good plan. It's almost like I've coped with major medical surprises before. :P

---

*This is not a given. You can have the genetic predisposition for celiac without it ever being triggered.

**She has a big tub full of glutiny things from her capacious kitchen drawers (my mom loves to bake, and loves to cook, and loves to buy ingredients because she doesn't know what they are).

Dad: "This is the perfect chance to get rid of things I don't like! 'This has gluten in it! Into the bucket!'"
Mom: "No, that pile of weird stuff is the stuff WITHOUT gluten!"
Dad: "But I don't like ANY of this stuff."
Mom: *sobs* "We're only going to have the weird stuff left."

also, as E and were getting ready to leave:

Mom: "Hey guys, do you want this acorn flour?"
E: "Acorn flour has gluten?"
Mom: "No, it's just really nasty."

I'm still busy, but far less stressed than I have been, and a maniness of good things is shaping up today. I had my shoe appointment, and instead of being frustrating and draining it was relaxing and fun, because instead of the old corp I went to a tiny place run by the music friend* who got fired by the big corp five years ago, the guy I've always liked, the one shoe guy who's always been absolutely genuinely honestly dedicated to not changing things that work and treating me like the expert on my own body. His office consists of him and an office manager, who also seems super sweet, and my 'appointment' was an hour and a half during which we also caught up on what we'd been up to for the last five years.

Before the appointment I went to pick my baby rent-a-tree up from Puget Sound Plants, which involved a few navigational failures on my part and quite a nice drive around the libby road/36th area. :P (I know the area and where I was; I just forget which roads actually go through. Answer: Not the one I was aiming at, apparently). It was a little weird because it's a wholesale nursery without a big public face, and I went in the wrong driveway, so I had to be pointed at the office -- but in the office was didotwite2001's little brother, who recognized me and has (she said in a tone reminiscent of an elderly aunt) really grown up into a nice young man. :P (He seems super happy to be working there too, H! He said he really likes it. Awesome!). I got my baby tree and four of the dwarf red osier dogwoods (3 for me; 1 for my cousin Kelsey, in Seattle, just because it's the 'kelseyi' cultivar :P), and a nice chat to boot.

To top it all off, I have a whole week off to look forward to, and Caladri and I are finally figuring out plans for dinner, which is both fun and makes me feel less like a social failure. When I get really stressed I avoid making plans, and then worry that people will think I'm avoiding them, so finally getting it worked out is a marvelous thing. :)

*"Music Friend" can refer to a wide range from close friend to acquaintance. It's really "Member of my music community", and it could be someone I see every week and have known for 15 years, like Tom the Dulcimer, or someone I haven't seen for years, like Brett The Shoe Guy. There's still a big sense of community because we know so many of the same people, and are there in an emergency (for instance, Brett is the guy who had the low-lying farm that was flooded a few years ago; I went down and helped with a work day for that).

Studio is still paused for lighting research/confusion, bus parental helper, and holidays. Had another relaxing weekend. It feels kind of wrong, though, like there are eleventy-twelve things I should be doing and I just can't remember any of them. I probably should have cleaned the house nicely, and balanced the checkbook (which I've been avoiding, because who really wants to know how much money they've spent on a big project?), and worked on various personal projects. Instead I made and sent the thumbnails for my painting commission (yay!)... and played in the Skyrim Creation Kit.

That last holds two bits of profound insight into my psyche and coping strategies, I think. First and most obviously, I like to use games to give myself control over my world when I don't have it otherwise (Minecraft! Skyrim remodeling!).  Secondly, I love learning new things. I love learning new things to the point where it's actively detrimental, because I'm so bad at focusing on old things. And I'm good at it, too -- my initial learning curve goes ZOOM, which provides a really nice ego buzz for awhile. And then, eventually, I realize I've been doing the thing long enough that it's not new, the learning curve has slowed, and I really should be better at it by now, or more focused, or whatever.

I am SO GOOD at being a newb. That 'focus until mastery' thing is the bit where I have trouble.

I really hate level grinding.

I only want quest XP.

(This is the opposite problem from that experienced by a few friends of mine, who are so used to being really good at what they do that being a beginner is hard).

I think I HAVE managed to master the pork-and-bell-pepper stir fry I've been making, so a good dinner was one of the weekend accomplishments, and E and I read Nine Goblins aloud to each other while making/eating/digesting.

Monday sucked. Manufactured emergencies at work and bills when I got home. One account cancelled a recurring payment, informed me of this via email, then said my email wasn't registered when I went to the site. The podiatrist's revised bill arrived, and while they did remove the charge for the X-ray I didn't need and wasn't willing to pay for, they tacked on another one, on a totally different day, which they just flat-out made up. And I still haven't dealt with the insurance company (or the administrating insurance pool -- not sure which I'm supposed to be calling) about the deductible adjustment I was *supposed* to get, so there's that to do, too. Then I still have to pay the $400 bill... which is chump change as far as the American Medical Industry is concerned, but still a lot of Do Not Want.

Oh! And my little brother may have celiac; may, in fact, have had it since he was tiny, but had too much other stuff going on for anyone to notice. Which means it may have done irreparable damage. So, since it's genetic, my mom now wants me to get tested for that if it turns out he has it (it can be asymptomatic and still damaging), and I'm more in the mode where I don't want to go to the doctor unless something is actually falling off, just because money. (And there's all sorts of lovely familial emotional stuff from oh-god-his-whole-life-could've-been-different-if-we'd-noticed-this-sooner-how-much-is-our-fault, too, but let's not even GO there).

The 'upside' of the foot injections is that I've now burnt through my deductible, which means IF I can find shoes and IF I can get them in to be modified before the new year, the first pair'll only cost me $50 instead of $550. Except I hate shoe shopping (for all the obvious reasons) even when I don't have a time crunch. Joy.

Why does the expensive shit hit the fan around the holidays?

(Oh -- and my org DOES offer a lower deductible plan, but as a pro-rated part timer it's cheaper for me to have this one... at least it was. It's hard to tell, since they sent out no information and they kept stalling over union negotiations so we don't actually know how much work'll pay even though the open enrollment period is over).

And I still feel like I'm forgetting something. Something really important. Like I'm letting people down and flaking out, and I'm not sure on what.

Damn it, though, Beth's coming down from Vancouver today, we're all going to eat a lovely dinner at the thai house, and there'll be the session. Then it's only one more day of work until the turkey fest, and I get to relax with family and chosen-family and drink wine like it was an endurance event, and then I get to meet Stasia in meatspace!

Oh, and put someone up from that crowd in my 'guest' room... which means oh shit, I need to clean.

And we need a folklife application by saturday.

And I'm going to miss the deadline for reducing my deductible next year... but wtf, it doesn't seem to be working for me this year.

I suppose if the money crunch didn't happen all at once, it wouldn't really be a money crunch. Still... why does everything have to happen at once?

Calliope's vet visit was $100 yesterday. Monkey has his annual checkup next week, which won't be quite as much, but is still one more thing. The bills for my foot injections have just started to come in -- $120 per the insurance company, and $208 per the doctor's office, which appears to have double billed me for the x-ray. There are two more injections bills yet to arrive, so I have two more (slightly smaller) chunks to look forward to.

The insurance billing paperwork states my deductible as $500, but I jumped through a ton of hoops last year in order to get a 'healthy bonus', so it's supposed to be lowered to $350. I can't make heads or tails of how any of this is calculated, though apparently the expertise required to stick a needle in my foot bills at $160 for five minutes. (the injection meds themselves? Six bucks).

I totally have the money to pay for all of this, but I'm also at the point where my remodeling war chest is getting low, and it's nearing the end of the year, which means holidays and, worse, shoe shopping. The shoe shopping is all tied in with the medical expenses; it makes financial sense for me to get several pairs of shoes modified this year, while my deductible is A) lowered and B) paid for by my foot injury, because otherwise the first pair of shoes would cost me $500. After that each one is only around $50, so obviously, better to do them in a bunch!

...except then I have to find and purchase the actual shoes, which is really rough, and since I have to have all the work done on them I like to get nice shoes that last forever, so each pair will probably cost over $100. 

When I was little, my mom promised me she'd always pay for my shoes and birth control. Birth control because she's an awesome mom and she never wanted that important life choice to come down to money; shoes because she could see that shoes would always be an expensive source of stress for me. I don't like having to invoke that promise (she's probably paid for more than half of the shoes in my closet now, but I usually do part, and at least go in ready to pay -- if she offers instead, sure!), but I think I might -- even if it's just in the form of an interest free loan, helping with shoes before the end of the year would be a really big deal. 

Thankfully there's only one hugely expensive part of the remodeling project left (the floor heat and floor). We can do the electrical work a hundred bucks at a time. The landscaping at the end may cost a packet, but I'll have six months to do it, so that's workable. It's just the... *waves hands distractedly* everything else.

I'm slowly being convinced to refer to my various shoe modifications as a prosthesis. We've (parents, me, doctors) always referred to them as either prostheses or orthotics, depending on what insurance felt like covering at the time, and it never really mattered. But three visits to a podiatrist has convinced me that if you call it an orthotic (on the basis that it's a shoe modification and shoe insert), people don't think about it right. Prosthesis seems like an overkill kind of word, but since the lift is functionally replacing an inch and a half of leg, it actually fits the function better.

I reached this conclusion this morning, as the nurse asked, for the second time, whether I'd been 'wearing my inserts'. Which she may have called 'prefab', meaning apparently 'our office could not charge you for them since they came from elsewhere.'

YES, OKAY, THAT IS THE ONLY WAY I WEAR SHOES, IT WAS CUSTOM MOLDED TO MY FOOT AND HAS NOTHING TO DO WITH STEPPING WRONG IN A FREAKING CAVE.

The podiatrist gave me exactly what I needed for my injury (yay, miracle injections!) but it is sooo painfully clear that their day-to-day is totally not built for patients like me. :P

1. I got the (hopefully last) injection in my foot, today. It's a little achy, but not nearly as painful, unsettling, and shaky-making as the one two weeks ago -- I think the prior one the needle must've hit something it wasn't supposed to.

2. As I was leaving the doc's office, I saw a dog, so I stopped to say hi. The dog's person looked up from across the street and called me by name.

He remembered me from elementary school.

I have no idea who he is. Even after he told me his name and described himself age whatever. I don't even remember some people from high school, and he remembers someone from elementary school, despite being in recovery from a traumatic brain injury.

And apparently I still look like I did when I was nine.

3. I'm realizing that a lot of the worst fan arguments I've had on tumblr happen because I'm criticizing the whole story, while the other person is arguing within the context of the story, as if the work of media was a given. I think those are both valid models for different types of criticism, but damn, they don't play well together. They really don't play well together if you don't acknowledge that you're actually talking about two different things.

And I may find the 'only capable of seeing it within it's own framework' a bit simplistic. :P /snob

As always, tumblr exacerbates this by not having any clear threading, so a conversation that clearly started on a meta/societal level can be derailed by someone reading it at an in-context level -- and I can't even really blame them. But it is rather tiring to have to explain "Yes, of course it makes sense within the story, the creators made the story that way. But WHY DID THEY DO THAT?" And try to do it without using your all-caps Internet Outside Voice. :P

One of the reasons I'm finding the doctor's visit scheduling irksome is that I'm still not sure I should be going at all. I probably should have gone two months ago, so I could be fine now, but it's so late now that the whole thing might be pointless -- and then it's hassle and money down the drain.

This is all from that caving injury to my foot in early June. I didn't go to the doc at the time because there was no visible swelling, no visible bruising, I could move everything that I should be able to move, and the initial recovery rate was fast (couldn't walk that night, could hobble with stick the next morning, could hobble without stick the next day, and on upwards). On Friday the doc said that was a totally reasonable decision,* and, indeed, when I'd called and chatted with the nurse about it the week after the injury she said not to bother coming in.

Buuuut, that was early June. It's now mid September, and driving Kiyoko to the airport and back (2 hr round trip) still causes me a distracting amount of pain by the end. I've had to opt out of a hike my parents made last weekend, that under normal circumstances would be difficult-but-manageable for me. I've had to severely curtail my summer biking, sticking to pretty much commute-and-errands only -- the longest ride I've done since the injury was 18 miles, and that was at Kiyoko's super easy pace, not my normal one.

Still, though, it mostly hurts when I use it intensely -- which has, naturally, included every step of the remodel, because 'walking on cement all day' = intense.

Oh, and my gait all summer when not wearing shoes has been weird, because I normally walk up on the ball of my right foot a bit to make up partially for the limb length discrepancy, and the ball of my right foot is where I did... whatever it was I did. By now, there are days when I *can* walk normally-for-me, though... so maybe I'm better just being patient.

My doctor said that if I was ANY of his other patients he'd tell me to rest and let time do it's work, but he figures that I'"m active enough that it's a real hassle. He's right, and I really appreciate the personal attention, but... ugh. Not sure anything'll speed up the process, now.

*I have a big ol' scar from a time I decided not to go to the ER when I really should have, so I was pleased to hear he didn't think I'd made the same mistake this time. :P In my defense, the first time I was also in shock and mildly concussed. I'm very capable when in shock, but not necessarily very wise.