MeghanIsMe

My emotions have been yoyoing a lot lately, sometimes by the hour. On the downswings, lying down in a dark place and removing stimulation helps, so I've been trying to do that instead of doomscrolling on my computer, or freezing in place because I don't have capacity to make decisions about what I should do next. It's not very fun. Talking with Miriam about it last night gave me some insights, as talking with her often does.

I have more positive things in my life than I've had in a long time. In-person events, in-person friends, and confidence to reach out and look for community and connections are really all pretty new. That's a lot of disruption, and disruption is stressful, even when it's good. And there's some big bad stuff too that doesn't help. The US. My living situation and the clutter.

I regularly have moments when I feel really great in ways I haven't regularly felt in years, and that gives me a lot of hope. I very much believe that things are better now, and will keep getting better. But I need to incorporate all this change and find a new baseline.

Anyway, I sent in another job application: public services librarian in London. Which would be a crappy commute, but for a job that pays decently and gives me library experience for my resume, we'll move further from Hamilton and Toronto, even though I really really don't want to.

I can't help but wonder if any of the students at Miriam's final exam arrived high, given that it's 4/20.

The class is huge, so the exam is held in a gym along with another section, and so there were about 300 people there. There may be a more appropriate way to ask about accommodations than Miriam found, but the person she talked to about having a good chair and access to power for a heating pad said they didn't know how to do that. So I came with and brought my desk chair in for her. We also got a spot next to the AV equipment so she could plug in the pad. I think it will all be ok.

I hung out here for four hours reading manga while students wrote their comp-sci 110 finals.

A couple days ago, Miriam and I were playing Baldur's Gate 3 together and I was hit hard by the sadness of not having had girl experiences growing up. One of the characters reconnected with a childhood friend, and they talked about spending time together in a hidden place that other people didn't know about, doing things like talking and braiding each other's hair. I just felt a twinge of sadness at first, but it kept growing and then I was crying on Miriam's shoulder as she silently comforted me.

I wanted something like so much, though I didn't understand that. Even when I was older, in my 20s and 30s, there were a couple people in my life who I would have loved to have that with. But to various degrees, I didn't understand that was what I wanted, and didn't know how to ask. I think I could probably have that now, finally, except for Covid, and missing it now hurts just as much sometimes, when I think about it too much.

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The doctor appointment for Miriam came and we did not get a diagnosis. The rheumatologist has ordered more tests. MRIs, X-rays, and blood tests, including the blood test that the testing center failed to do last time for some reason.

Myself, I'm still in that sort of depressive span that I've been associating with the upcoming appointment. Maybe, since the appointment didn't resolve anything, I guess the anxiety and depression hasn't really gone away. In retrospect, I had so much more hope pinned on that appointment than I thought. And about half of it was self-centered hope that if we know what's going on with Miriam, we will have information to reconsider our precautions to avoid Covid exposure.

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I hear some of you are having warmer weather. While that's disturbing in itself in some cases, I am pretty tired of the winter here. We're in another cold snap and had a lot of snow over the weekend. I had to move my car to the street yesterday so the parking lot can be plowed, and there's enough snow on the ground to make it hard for Ella to find places to pee off of the sidewalk.

The temperature is -20C / -4F, so it's warmed up a little bit from the last couple of days. I managed to get out and buy a replacement car battery a week or so ago. The old one was on its last legs, and it's reassuring to know I won't have to go out there in weather like this and deal with connecting our jump pack to start the car, as I did a few times before that.

I just looked at Train Girl's Facebook page. I haven't tried to see what she's been up to in a long time because I have strong, conflicted feelings about her. She has unfriended me, so I suppose I don't need to worry about whether or not and how to connect with her. I don't really understand what happened, and I still have that 1907 book on automobile repair that I brought up from Kenosha to give to her.

Meanwhile, an old friend of my dad's who I knew as a little kid, and who I connected with on Facebook after his death, posted a stupid anti-Biden meme on his wall. I left a polite note saying that it was nice to reconnect with him after my dad's death, but that as the target of orchestrated campaigns of violence and attempts to strip me of civil rights on the part of the Republican party, I didn't want to see this in my feed. Then I unfriended him.

I miss my dad so much. I wish I could talk to him about some of the stuff going on my life. And now it looks like Miriam's dad's health is in question. He's in his 80s, and is scheduled for a bone marrow biopsy because of the possibility of cancer. How could we deal with the loss of her father on top of everything else that's been happening?

Other than that, I regret not writing here more and just putting lots of short bits on Facebook, but writing things at length requires more of some kind of energy than I usually have, and putting lots of short stuff here feels like it would be annoying. I'm not sure why that latter part is the case.

The second appointment with Miriam's new rheumatologist is coming up next week. It turns out that the labs who do bloodwork here just completely failed to do one of the tests the doctor requisitioned. We've tried to follow up with the doctor's office a couple times, and they have finally figured out that the test never got done. They contacted LifeLabs, the place that does the blood draws, and LifeLabs said that test was not ordered. This has happened before, so Miriam had a picture of the req form on her phone to send to the doctor, complete with a big red arrow pointing at the test.

But at this point, it's not going to be done before the appointment, and if this causes another month or two of delays in diagnosis and treatment, I'm going to be very angry. I fervently hope, if that's what happens, that the doctor will make a special appointment to follow up after the test, but I'm not holding my breath. Miriam has suggested that maybe her x-ray results are sufficient for a diagnosis already and that's why the office hasn't followed up yet, but I suspect that's wishful thinking.

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She and I went out to a local winter festival here in Regina called Frost. There was a stand making maple syrup taffy: she wanted to share that with me since it was something she had on field trips growing up in Ontario and I'd never had it before. It was fun. It was tasty. But the experience was also sad. The limitations she has going to things like this just keep reminding me that things will quite possibly never be the same for her as they were before the progression of this illness, and by extension, very often will not be the same for me either. I miss just being able to do something as simple as go grocery shopping with her without worrying whether the activity will cause her pain for the rest of the day, or if she won't be able to stay with me in the store because of pain. We did go to CostCo together yesterday and it was a nice little trip. Some days and some activities are worse than others at different times and it's hard to know why.

The winter festival also had a few metal firepits going, burning wood and making a cheery warmth and glow. I caught the scent of woodsmoke once and felt a surge of fear and did my best to avoid them the rest of the time we were there. There's another way certain things may never be the same for me.

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Despite the above few paragraphs, my mental health has been better of late. Regular attendance at the weekly online Still Coviding group I've been going to, regularly having a group of people who understand a big part of my situation in ways that most other people don't, has been a blessing.

I've been trying to connect with other folks in other ways, but without much success. I wrote someone who posted on the Reddit T4T community who is on the US west coast and described herself as a "Covid-conscious cutie looking for flirty friends." We exchanged a couple of messages, but I haven't heard back in a couple of days. She's a little over 10 years younger than me, so that may be an issue.

I posted on the Discord channel for the local trans support group. I said that it's been hard for me to attend the online meetings because health concerns for my partner mean I need to minimize Covid exposure, and it hurts to listen to people talking about all the things they're doing that I can't do. But, I said, being around just one or two people who are masking is an acceptable level of risk, and I would *love* to have a person or two to get together with and which anime once in a while. I got one message of sympathy and an offer to talk, but no interest in actually getting together.

I've looked at other posts on T4T lately, but haven't found anyone I felt like making contact with. It's funny; I am actively wishing for flirty/sexual connections with other people, and I'm a lot less demisexual than I once thought I was, but contacting people who seem to *just* be looking for people to sext with, or to get on video for sexytimes with, is not appealing. I need there to be *something, anything* beyond that. And the ages of most of the people posting there means my options are fairly limited. But I'm still looking.

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My mental health has been good enough to get absorbed in a couple of hobbies. It's really good to break out of the vicious circle of mental health not being good enough to get absorbed in anything that's good for mental health. I got parts together to refurb the vacuum tube-based audio generator I bought from a Kijiji seller last year, but before they arrived in the mail, I got started on coding LED control algorithms. My friend Posi sent me hardware to do some of that after the fire happened, but I just hadn't been together enough to figure it out. We got on voice chat together and he walked me through setting up the software, soldering some wires to an Arduino and an LED strip, and basic use of existing libraries to make them light up.

Since then, I've spent a lot of hours writing code. I still have a lot to do and learn, but I did manage to finally get trans colors scrolling up and down on the front of the case the way I've imagined since putting this computer together more than a year ago, and it makes me happy. In general, my computer increasingly looks like unicorns and faeries are holding a rave in there and I am pleased. Here's a short video of one of the effects I have working:

https://www.youtube.com/shorts/fVvkrH4GTj8

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CW: food/body/weight talk

I was managing my eating really well for quite some time, and am currently at my lowest weight since 2018 (which is still 40 pounds or so heavier than I would like) and I've been really happy about that. In the last week, though, I've had trouble again. I think it's possible that as this appointment for Miriam gets close, it's causing me a lot of stress, fear, anxiety, and anger at the medical system. It's so easy to use food to deal with those things.

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Last but not least, I finally got that new piercing done that I've been planning to do with birthday/Chanukah money from Miriam's family back in November. I decided my mental health is finally good enough to take care of it, and I now have a helix done on my left ear. So many elf-girls in fantasy art have piercings in that area - probably a way for the artist to emphasize the exotic ear shape I suppose - and I want to have a pretty elf-girl piercing too. I'm also glad to have piercings connected to both my parents and Miriam's parents; that's really meaningful to me.

Miriam said she didn't mind if I wrote about her doctor appointment today.

The office of Miriam's GP made an appointment to see her after the X-ray results (showing polyarticular degenerative changes at the DIP joints - this is not fibromyalgia) from December came back. We were both hoping that she would have something to say about...something? Some kind of progress toward a diagnosis? But it was nothing so informative.

The doctor asked what the appointment was for, so Miriam told her that her office had requested one about the X-rays. She looked at the X-rays and basically said that it looks like rheumatoid arthritis, but the rheumatologist will have to confirm an actual diagnosis. She seemed to think that Miriam would have a diagnosis soon, and I said that I hoped so after three-years-plus of trying. (Rheumatoid arthritis seems less likely than psoriatic arthritis given our understanding so far, but we'll have to see. She isn't a typical presentation of anything exactly.)

The doctor asked how her pain was. Miriam said that it hurts. It hurts enough that without some kind of effective treatment, she's really been considering stopping pursuit of the career she wants and trying to work part time because it's been so overwhelming. (This is why I've been considering jobs anywhere in Canada at this point.)

The GP didn't have any solutions for pain, but did renew a few medications that needed renewing for her, so that's something at least.

Miriam's last lab work was done in December and all of the results have come back *except* one blood panel. It's not clear why that one isn't done yet when the others were done weeks ago, but she was kind of waiting on that to try talking to the rheumatologist again. But today she called to make an appointment anyway and the next one is near the end of February. (I'm wondering whether that panel was somehow missed on the requisition, which would be incredibly frustrating bad luck since it has one of the only tests on that she hasn't had before.)

So that's how all that's going. No real news, but maybe there'll be something from the rheumatologist in a month and a half. Altogether, it also seems increasingly likely to me that this is a post-viral immune condition triggered by Covid infection just after we moved to Europe, though there isn't a way to be sure of that.

I hate that this all takes so long and she's in so much pain so often and there's nothing I can do about it. I'm still angry at the first rheumatologist who gave her a fibro diagnosis and told her to have her GP manage it.

Tests ordered by Miriam's second rheumatologist are providing more information that may be leading toward a diagnosis of psoriatic arthritis. It's one of the things we've been suspecting for years. I just hope so much that we have an answer for her soon and she can start on treatment that will reduce her pain and make her more physically functional.

Because people with mental illnesses can be really bad at following up on things, I was out of my meds for about a week. I finally got in to see the doctor who is managing my HRT and she renewed all the things for me and I'm hoping I will be a bit more stable being back on bupropion as an anti-depressant. Seeing Dr. Clark was affirming and reassuring and just wonderful as always. She really is a provincial treasure.

I was still kind of crashy yesterday evening even though I had a fantastic experience at the optometrist.
The doctor and her staff were all wearing masks. This is why we chose the place, but it was still just fabulous to see. Everyone was super supportive in their interactions with me. Being with Miriam, we both talked a bunch about face appearance stuff with one of the staff members, and she gave us a recommendation for somewhere for eyebrow threading. All my interactions with them were positive and gender affirming and it was just wonderful. I told the doctor about what I was doing in grad school in Syracuse and she asked me to "please run for mayor." *laughs*

Still, there was a lot of social time when I'm not used to that and it was kind of exhausting. I napped when I got home and then did a bunch of laundry (or maybe it was the other way around?) and that helped, but I was still down afterward. I sat next to Miriam and tried watching an anime series called Dragon Goes House Hunting because it seemed fun, but it actually made me cry a lot. The dragon, who is written as though he's about 10 years old, gets kicked out of his house and is attacked by various groups, including dwarves who want to vivisect him. He keeps getting away, but he's so sad and scared and lonely and just wants to go home and it hurt my heart.

At the end, he meets the elf he's been looking for who runs a construction and real estate company (I think?). The elf finds him while a group of self-proclaimed "heroes" is harassing him and shooting arrows at him because he is an evil creature who must be destroyed.

At the end of the first episode, the elf uses some kind of magic that near instantaneously leaves the heroes as a smouldering pile of bones and armor, and I was pleased. I still cried on Miriam's shoulder for a while after. Maybe it'll be less hard on me when I'm in better headspace and am more regulated by meds.

Miriam and I drove to Saskatoon to see a second rheumatologist in the ongoing pursuit of a diagnosis for her. We are both cautiously optimistic about her. While we were in Saskatoon, we went to the zoo for an hour before they closed too! Over the winter, they do admission by donation, and there is a lot of outdoor stuff that's pretty Covid safe. Little Meghan has wanted to go to a zoo for a long time (I used to bike to Lincoln Park Zoo in Chicago sometimes and I really miss that), and we both had a really fun time looking at cute aminals. The dingoes kept trying to sniff and lick our hands through the glass of their enclosure.

So now I'm waiting to hear back on the job, and trying to be a bit less crazy. And making cookies. Right now, this moment, I am cooking cookies!

These past couple of weeks were difficult in a few ways. Miriam's parents were for a week. Her dad is pretty conservative in a lot of ways and I got kind of upset with him a few times. I got sick about halfway through their visit. My best guess is I caught something while at the dentist without a mask while people were in close vicinity of my open mouth for an hour or more. Today, I finally feel like the symptoms are just ghosts of their former selves.

I reaggravated my neck and shoulder in the same place that I hurt it while I was in Wisconsin. I think it's because of all the coughing I was doing while sick. That started around when her parents left on the 15th, got really bad on the 16th, and is still giving me twinges as I move around today, but it's finally mostly better after a week of pain meds and a heating pad. I need to be careful not to type too much or do other things with that arm though, or it gets worse again.

Five days ago, I wrote:

"I think I've aggravated whatever was giving me pain in my neck and shoulder while I was in Wisconsin. (Maybe related to all the coughing I'm doing?) There, it was some of the worst pain in my life: far worse than when I broke my wrist. It's not as bad now: I am functional and able to write. But it's around a 7 when lying down and is keeping me from sleeping. I can get in a position while sitting up where it's more like a 4-5. That's while on several painkillers.

I'm also still dealing with symptoms from being ill and trying to manage all of that on like four hours of sleep. And when I did sleep last night, I had a dream where my dad told me that if I needed him he's a phone call away, and obviously he is not, so I kind of don't want to sleep anyway, except I'm exhausted. So I'm basically a mess right now. Sorry for not being communicative."

So yeah, there's some grief too that's keeping me down. That was exacerbated today by going to CostCo to pick up prescriptions and seeing Christmas decorations. I've been expecting some kind of holiday grief to come along, and today was the first big wave of it. I managed to not cry in the store at least.

On the way home, between grief, loneliness, and isolation, I ate a bunch of cake bites. I bought some after deciding that I was not likely to binge-eat them all too quickly. I was wrong. I ate half the CostCo sized container on the way home. I was feeling pretty disappointed and upset with myself while I ate them and thoughts of self-harm were in my mind, but then I thought of the inner-child work I've been doing with myself. If I was taking care of Little Meghan, and someone wanted to hurt her, I would fuck them up. And I am Little Meghan, and sometimes she eats too much because she is really sad and hurting, and that does not mean she is bad. It means she is a human being who hurts and deserves love.

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My birthday was nice, if kind of lonely. At least Miriam and her parents were there. We ordered tasty Regina style pizza and pretty unremarkable cheesecake from a local place, Western Pizza.

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I've been having some one-person girls' nights on the couch, snuggled up with my dog and my stuffed animals under a warm blanket and watching sapphic media. Those really help get me away from my thoughts sometimes. Miriam helps a lot too: I was feeling particularly bad on the morning of the 11th after my attempts to reach out in a few places online didn't get anywhere. We were at a grocery store to get something her parents needed and while she was inside she bought me a bouquet of flowers. I cried sad, happy, and deep tears against her in the car, feeling loved, and thought of, and cared for, and validated. I would be lost without her.

Miriam finally got an MRI done after waiting for I forget how many months. She (and I) have been hoping for information that will provide a diagnosis. Whatever is going on with her, we'd really like to know what it is.

But while the results show abnormalities, they could be related to a vast number of different things. Maybe along with other symptoms they will point to something solid. The results were only posted to her health record last night around 1 AM, so she's hoping for a call from the neurologist today. If not, she will likely call tomorrow morning.

The relevant portion of the report:

Few T2 and FLAIR hyperintense foci are less than centimeter in size and scattered in random distribution in subcortical and deep white matter of frontoparietal lobes, likely mild arteriosclerotic leukoencephalopathy.

She is anxious. I am too.