fluffy rambles (Adhd)

I use an app called Medisafe to give me my medication reminders. It’s useful because it tracks my doses and also tracks how much I have left so I know when to order refills and so on. I’ve been using it for years.

Unfortunately it has a critical problem in that it only sends three easy-to-miss reminders spaced ten minutes apart with no way of configuring it. So often I’ll end up taking my medication a few hours later than the scheduled time, because I head to bed and notice the pending reminder that I meant to fulfill.

Today I had a followup with my doctor after the cessation of gabapentin. My blood pressure is the lowest it’s been in years (118/75!) and she was really happy to see how much less stress I’m under. After discussing the current medication status we agree that I should stay on the nortriptyline for now, and she’s glad that physical therapy has been helping me a lot, as well as me getting better at mindfulness and other stress reduction things.

She also encouraged me to get going with a psychiatrist again so that I can possibly get back on Adderall or to try something else. I think before I do that I’ll see how well I tolerate caffeine. Which I’ve had a bit of over the past few days and it’s not been hecking me up at all, so this seems really promising.

Anyway she gave me a lot of words of encouragement and is also grateful that I’m taking such an active role in trying to make my own life better on multiple fronts. Hopefully this trajectory can continue.

I have always been a night owl. Society in general shuns the night owl; waking up early is to be praised, you’re a go-getter, you’re proactive. Waking up late means you’re lazy, you’re irresponsible. Medicine is finally waking up¹ to the reality that different people have different natural sleep cycles, and this is okay, but their way of describing this is by calling the late-shift folks “delayed sleep phase disorder.”

People who are trans are told they have gender identity disorder.

People whose brains process stimulus differently and have a tendency to hyperfocus on problem-solving are told they have attention deficit disorder.

These aspects are framed as being outliers, deviations from the norm, problems to be fixed.

Disordered.

All these things that are inherent to me are framed as being problems. Things to be ashamed of. Things to cure.

But they are the things that make me who I am, and which give me strength.

So, the update from yesterday is that I am now on anticoagulants again, and I am not terribly happy about it. On the plus side I’m on Xarelto which takes way less management than Warfarin, but on the minus side I am told that I likely need to be on them for a long time (at least a year, possibly forever) due to my prior clot history, and so far it’s been giving me a headache and I’m also constantly worried about, you know, bleeding out and dying.

I’m also still in considerable pain, both in my leg but also in my everything else, because this fibro flare just will not end. And I’m under a lot of stress right now, and I’m frustrated at a lot of things.

So, I am using way more soap than usual when washing my hands, which has been drying out the skin a lot. To try to counteract that I’ve been using lotion a lot more. But it turns out that this leads to more tactile stimulation on my fingers (basically I constantly feel like I’ve just been soaking in the bathtub for an hour) which in turn leads to a sensory overload/pain flare, and it doesn’t even help with the dry skin anyway, and the dry skin also leads to its own level of sensory issues too. And Fiona’s insistence on sitting on my lap while I work isn’t helping at all. Just before lunch I had a bit of a meltdown because of it.

I guess I need to figure out a better way to periodically clean my hands without leading to other issues.

I could also really use a haircut, because my wild scraggly hair getting in my face is making this worse. Of course all the hair stylists are (rightfully) closed right now. I suppose I could break out my Flowbee but that feels like it’s taking the “mental stress due to isolation” look a bit too far. (Plus I don’t want my hair to be that short right now. I need every femininity cue I can get these days.) Maybe it’s time to finally learn how to use hair clips, but I suspect feeling them bouncing against my face would make me flare too.

Why is my brain like this? Ugh.

I’ve mentioned before how I used to self-medicate my undiagnosed ADHD with a trickle of caffeine until I started getting anxiety problems from it. I’ve also mentioned how post-diagnosis I’ve had trouble finding a medication which has worked for me, and I’ve tried slowly reacclimating myself to caffeine during periods between medications.

At my new job we have a pretty decent automatic espresso-drink maker, and out of curiosity I’ve tried slowly consuming one coffee drink over the course of each morning, and so far that’s actually working pretty well for me. Inasmuch as it’s not giving me a panic attack. It hasn’t really helped me with my focus, but maybe this is a sign I can try having more and maybe it won’t make me feel like I’m going to die!

I’m not about to start slamming the energy drinks or anything, but still, I’m glad that I’ve at least been able to get back a thing that’s been missing for the past decade.

So, in anticipation of my new job starting next week I’m trying to figure out what the right balance of medications should be for my various neurological issues, and I’m not sure where the balance point should be. I’m mostly thinking out loud here, but I am going to try to walk through it and maybe folks with more experience can comment, or something.

So, on the plus side, Adderall XR has been helping me quite a lot with my focus and executive functioning.

On the minus side, I’m having several of the unpleasant side effects: greatly increased blood pressure, numb toes, migraines/nausea (starting yesterday or so), and constipation.

I was really hoping I finally found something that works for me. Maybe I should stop taking it for a couple days and see how I feel. Because right now I just feel bad.

Back in 2015, I was a complete mess, and I did everything I could to hide it. I was still having panic attacks regularly, and they would be brought on by the slightest provocation. But I felt, working in tech, that I had to be quiet about it, and just let things pass and things would get better if I ignored them.

One day a coworker did a thing that triggered a pretty big panic attack. It wasn’t anything malicious on his part, just a cavalier, morbid joke in gestural form that happened to tread upon one of my biggest triggers.

I felt awful, and I wanted to keep from feeling that way again.

So I messaged him on our work chat, and told him that the gesture he made happens to be a huge trigger for me and I was having a pretty major panic attack as a result. And his response was incredibly helpful: he didn’t realize, he understood, and he wouldn’t do it again. And he stuck to that.

I’ve been on Adderall XR for a bit over a week now. It’s going pretty okay, except for the stuff that isn’t.

So after Concerta turned out to be not a great fit for me I stopped taking it, and decided to wait until my next psychiatrist appointment to try something new.

That appointment was on Wednesday, and the psychiatrist decided that Adderall XR (10mg/day) would be the next logical thing to try. The prescription arrived yesterday (Kaiser’s mail-order pharmacy works fast!) and so I took my first dose this morning.

So I was taking 18mg of Concerta for about a month and found that I tolerated it well, although it wasn’t helping my focus any (and if anything it made me drowsy). So I asked to go up to the next dosage.

So, yesterday I took 27mg for the first time (at 8:30 AM as usual), and it didn’t help me with my focus, but it sure as hell made me feel irritable all day, and my heart rate just progressively went higher and higher throughout the day. At 9 PM it suddenly went up to 130BPM while I was sitting down, and I could feel it pounding too. I finally fell asleep at around 2 AM, and my bed said my heart rate pretty quickly went back down to normal.

Today I opted not to take it at all and I emailed my psychiatrist saying I was going to discontinue it, and I’ll just try self-medicating with caffeine until my next psych appointment in a few weeks, unless she has a specific recommendation for a different thing to try.

Sure would be nice if brains came with user manuals.

So, a new decade has started¹. Hopefully this next one will go a lot better than the last one.

That ended up not going very well.

It’s still a good to-do list of stuff I want to do, but making comics, working on AR stuff, and generally being in pain/depression while also figuring out my ADHD meds has taken a lot more out of me than I expected.

Really gotta stop being overly ambitious.

I have an official ADHD diagnosis, and a psychiatrist I also think is pretty darn good.

(Her actual statement: “I think it’s pretty clear you have ADHD.” Go figure.)

Anyway. My HMO has a very specific medication schedule and the only non-stimulant medication they allow needs a very good reason, so we’re going to try Concerta (which is a time-release form of Ritalin) and see if that hecks me up too much. Also being basically legal meth, one of its side effects is weight loss, and I certainly wouldn’t mind that one.

I’ve been spending the last few weeks slowly ramping up my caffeine consumption and while my tolerance isn’t nearly where it was before the garbage fire that was late 2011, so maybe this won’t be too much of a shock to the system.

On that note I’ve been enjoying my return to coffee snobbery. I ended up buying a Fellow Prismo (obligatory James Hoffmann review) and some of their fancy tasting glasses. They should arrive on Friday. It’ll be interesting to have “espresso-style coffee” out of my Aeropress. Also I seem to be accumulating quite the collection of coffee brewing paraphernalia.

I am also very tempted to get a Rok now. Maybe I should, like, get a decently-paying job first.

I feel like it’s been a little while since my last checkin post so let’s do one now, I guess.

So, GeekGirlCon was yesterday and today, and for once I vended at it, having been put on the waitlist every time I’d applied for the last few years.

I already have quite a few thoughts about how things went and how they could have gone better for me, and my thoughts about my future as a potential convention vendor. Which is to say, I probably won’t be doing this again – but not because of anything wrong with GeekGirlCon. (Just to get that out of the way.)

Note that this isn’t my first time tabling at GGC, as I had previously done so with the Seattle Indies in 2017. But that was a completely different setup for a completely different intention – promoting games and the Indies organization.

Oh I guess I haven’t blogged in a while. Like, a whole week. This can’t stand.

So, what am I up to?

Today was a travel day to Portland, for Retro Game Expo. So of course just as the train was ready to take off was when my HMO decided to call me to do the ADHD diagnostic intake. I asked if I could just call back later when I wasn’t likely to lose coverage in 3 minutes, and eventually I got the phone number to call.

So, when I got to Portland I called the number, where they immediately put me on hold for 30 minutes. After which they asked me what I was calling about, and when I said I was calling about getting my ADHD screening, they put me on hold for another 15 minutes. Not a great start.

So, this post about signs of undiagnosed ADHD showed up on one of my fibro communities and so much of it seemed PRETTY FAMILIAR, and I also found out that fibromyalgia and ADHD are highly comorbid, and then I was realizing that I stopped being able to focus on work and Getting Stuff Done when I had to go cold turkey on caffeine when my panic disorder started in 2011, and, wellp.