What about Linburg-Comstock?
It has been an odd week. With Dad back to work at a location instead of WFH, the general care in the house fell on me. Taking care of my grandma and the family dog is not particularly difficult, but change is something my anxiety reacts to poorly. Some part of me recognized on day 2 that this sudden schedule offered a structure I desperately needed. With certain time to do certain things, I could focus heavily on some projects that desperately need progress — the completion of every gecko enclosure, which benefits both them and me. Unfortunately, a somewhat ‘reversed’ sleep schedule created an impassable exhaustion.
The amounts of certain drugs dwindled as well. Anxiety medication narrowed down to a handful and then less. E-liquid seemed to dissipate at an extreme degree. The money to spend on absurd amounts of caffeine in cans had flown from my wallet, and half-caf coffee doesn’t quite cut it. Change, and falling back on some creature comforts, created a great degree of stress. Anticipation of a regular wellness visit exacerbated the stress. “White-coat-syndrome runs in the family,” said my mom. I reject the label.
It still was no surprise when my finger-biter read out a heart rate of 112–130. Tremors, powered by caffeine, not enough food, and anxiety, made it very hard for the poor critter to even get the reading in the first place, and the only way I could hold my hands for it to read me deprived me of viewing the little wiggly line that pops up on it.
That wiggly line is oddly calming.
So was probably one of my favorite individuals being in the office, and we had a laugh about the wiggly line.
The last time I was there my blood pressure had spiked a lot. While I held a similar degree of anxiety about going in for a regular visit, having someone unfamiliar talk to me first was a difficult thing. As predicted, this other individual got a much closer to normal reading (although it was still higher than it ought to be, but…anxiety).
Now I don’t really understand certain agreed upon, unspoken rules. After reading various reddit threads and listicles, I am under the impression that bringing up Something New in an appointment is generally The Worst. Maybe. So I asked. Not “if this is the worst thing ever,” but “when the right time to bring stuff up” is. Well, specifically, it was “when is the right time to bring up everything I’ve self-diagnosed?”
Everyone’s favorite. Let’s go talk to Doctor Google, Doctor Google has the answer. I am clearly, in this moment, dying of every disease known and not known to humankind, and I know far more than you about it.
I know nothing.
Except sometimes when there’s a cyst behind my knee and I figure that one out. Even then, I didn’t know. It was a decent guess, it was correct. It was a decent and correct guess when my grandma hit her first week on her second blood pressure medication and ended up with hyperkalemia, but the most important factor was getting her to the hospital where the diagnosis could be made, and she could receive treatment.
Glossing over some things I’d written excessively long ramblings about — PMDD (functional by taking on different actions/exercises, more experiments required), pectus excavatum (literally who cares if it’s not squishing stuff) — I asked, “What about Linburg-Comstock?”
Beautiful. My absurd degrees of explaining this to others and writing down everything I found was practice for this moment. Internally I found myself in the midst of a battle. Open up this other document where I wrote down the correct terminology to explain it and be That Person, or demonstrate and explain in my normal, plain description? Maybe all of the above, because I can’t fucking help myself.
Already feeling like I was existing on time that was not mine to exist on, and knowing that my approach was all of the worst things wrapped into one, I tried to cull down some of my rambling about my concern about it, concerns about treatment, trying not to be an absolute ass. I’ll be thinking about it for months. But true to the last time I wrote about it, it felt important to note that, although it’s likely pretty common, those who experience it as painful and seek treatment are very few, and treatment is a rare surgery. I would be willing to talk to anyone, if they have experience with the surgery that’s awesome, but otherwise I’d certainly be happy to go with someone who was willing to give it a shot. In the meantime, I wanted help to start the search.
I left with a referral for a hand surgeon.
It is tremendous and exciting to take the first steps on the journey. While the monetary requirements are still so far off, the preparation — geckos getting their own spaces that can be easily dealt with, learning some left-handed skills, finding some games to occupy my time — can truly begin. Talks can start. Talks have technically started. It may take time to find the right person, but I have a place to put my feet on the ground for now.
Everything leading up to the point of asking a stupid question and using qualifiers around my statements was primarily monotonous. I have become somewhat more aware of this tonality after a discussion recently where I asked. I’d heard myself in a recording and found it odd how certain things sounded way different than I thought, from my intonation to the way I hit the sibilant in “menace.” Of course we hear ourselves differently, but there was just something about it that made me question things. Perhaps I am often monotone in speaking, and I noticed that for a bulk of the appointment. In retrospect, a few things got me away from that, but in those moments I didn’t really notice.
Anyway, I wrote a few different paragraphs there and kept one of them, it is meaningless filler.
I am left wondering if I disappear within the day, or if I become one of those patients who is the story. I’d rather the former, but I acknowledge that sometimes my actions and statements are too outlandish not to be notable. A shame, that one. I did go into it with what I hope to be a derisive tone about my self-diagnoses, as I know it is the bane of everyone’s existence (although it certainly does have its place at times). I am not sure if that makes anything better. But this is not the thing I should keep finding myself thinking about. …although it certainly is and will be forever. I’m exhausted of myself.
All the same, there is a degree of freedom in throwing away the filter. Get excited about something, even if it is obvious as I am apparently so outward about my interest in anatomy and how things work. Hell yes I am. Here we are, this disastrous, terrifying assembly of barely-functioning, but beautifully-functioning, bits and bobs, little pivotal points, pulleys, stretchy weird noodle stuff, and meat. We are electrical meat in a skeleton mech draped in a suit of grotesque fleshy bits. That is amazing, and I love it.
I did have some bits from a document I opened to write unfiltered thoughts for the appointment in that I enjoyed looking over, many of the thoughts are either reflected here or in my actions earlier, including listing it under the umbrella of self-diagnosed nonsense:
“Linburg Comstock. This is the big one. I spent ages upon ages wondering what on earth was wrong with my wrist but had chalked it up to ‘some tendon thing.’ Technically, this was correct, and while following a promising lead one night I put some search terms into Google and there it was staring at me. LCS.
Due to its rarity (not in actuality, since it is relatively common in the population, but it is understudied), Linburg-Comstock syndrome/anomaly/whatever is an anomalous connection between tendons I do not remember the name of — that of the index finger and thumb. It causes action at the end of the index fingertip when the thumb tip is also bent. I absolutely looked into the terminology but as I am writing this nonsense document, I do not recall what everything is. I’d ask forgiveness but also no I’m not going to, why would I? You know what I mean. If you do not, simply ask and I will demonstrate. Actually I am likely to demonstrate anyway and you should see it to confirm, so…yes, demonstration.”
Although I ended up reading from the better-read document I assembled, but never finished:
“[sometimes called Syndrome/Variation/Anomaly], it occurs from anomalous tissue connecting FPL and FDP. Bending of the thumb at IPJ also causes flexing of DIPJ of index finger.”
There was a word used within that conversation that I cannot say I’ve heard in some time as well, “synchronously.” It makes me miss a lot of things, music, reading, just generally not wasting my time with things that do very little to keep my brain active.
The flip side is being at this location in my mind, anxious about being a fool, saying silly things, being silly, being so damn wound-up that it is genuinely impossible to focus on any one thing, but being too tired to do anything with this energy. So then we are left with the duality of exciting things, or good bits in a day full of heart rates you’d think I was exercising for once.
Well, no, I mean…
I suppose I was an ass at the checkout counter where I saw a little printout on, perhaps weight? of which I asked about and was offered the option for it to just be pitched.
There is this wholly disgraced tree in the back yard that had the audacity to drop its dead bark chunks onto my lilac bushes, and I fished a heavy piece over 6' long out of it. I am not particularly concerned about my exercise (this is in part a lie). The ability to pull that kind of useless activity out of my body, throw that chunk of heavy bark onto my shoulder and move it to the deck so I can admire the work in having moved the piece is certainly something. Just sometimes feels like perhaps I should be doing something so heavy-duty on a regular basis. But as we exit this central part of my cycle and delve back into the hellpit that is PMDD, I am certain I will find some hardcore things to keep myself occupied with.
It feels good to exercise. To feel as though I am in the ‘right’ body, as particular shapes change. It is ultimately not something I do rarely, but I cannot say that I partake in anything that keeps my heart rate elevated for quite the same duration that it did itself today due to anxiety. I suppose then my very real exhaustion and lack of focus makes that much more sense.
I am unhappy about that lack of focus, how I sat down to write something with an end-goal, and couldn’t find it. I am distressed by the amount of anxiety I find myself in over conversations that amount to very little in the end, at least…hopefully to others.
Anyway, it was not a bad day. Some very good progress in certain areas. Steps to take. I am happy about that.