“Heaven is a Curse Inside My Mind”

I tried to get back to sleep Sunday morning (10-25-26). We like it cool when we sleep but in winter it can get very cold in our bedroom so I use a few blankets, always using this one that my mother crocheted for me. My mother died a little over 5 years ago, so it means a lot to me.

I took Aaron to his treatment. I get bored waiting for hours, but I’ve been enjoying the drive home. Driving into the city this time was…an experience. New Yorkers have this thing where the lanes on the roads seem to be only suggestions. It’s a little stressful, but not as bad as I expected it to be. Aaron says I’m his hero for going to these appointments with him and giving him the rides home as these are not activities that are easy for me. It’s nice that recognizes and acknowledges this. I need some days where I don’t need to worry about anything like this, really consecutive days, because I have to go to bed very early to be up in the morning for these things and I’m wearing a bit thin on that front. I just need to find a balance. I only have so much energy in a single day due to my disability, and I had been doing really well with exercise and I need time and space for that which has been lagging of late. I’ll try to work that out with Aaron.

I was worn out from that little trip. Like I said, I only have so much energy to spend and these appointments involve driving for an hour, then me sitting in a waiting room for about 2.5 / 3 hours, and then me driving us home. It’s a lot, even though I’m not very active during these sessions, but that’s part of my frustration. I watched quite a bit of television. I watched more SVU, started re-watching AHS (with “Freak Show”, due my new viewing order – I watched the first 1.5 episodes), and I also watched another Avatar episode (S01E09 “The Waterbending Scroll”). I went to bed early again last night because I needed to be up early today for my own appointment.

This morning, Monday, October 26, I caught the A train at 181st and took it down to Penn Station (34th). Exiting the subway my immediate view was of the distant Empire State Building, then I walked by Madison Square Garden. This new appointment was in the same building as my anal pap, but this was a totally different doctor. Today I finally saw an endocrinologist. It only took 3 or 4 years. lol I did try to get in sooner, but there are a whole series of unforeseen hurdles and unexpected delays. My doctor was nice and informative and so now I have another member of my care team, which is extensive, for which I’m grateful.

When I got home, I ate. I had egg whites + a blueberry zucchini smoothie. I changed my clothes. I started a new poem when I was a the doctor’s office, which I finished. Then I went for a walk, stopping by to see Aaron visiting with his former coworker, said hi, then I was off to the park.

I showered when I got home. I had walked my usual 2 miles, plus today’s appointment, and I’d eaten well. I felt good. I relaxed with some Zelda (BOTW). Then decided I’d post this.

Oh! The nurse at the doctor’s office asked me if I was in the fashion industry, and when I went to the park, a woman stopped me to tell me how much she loved my pants. That was nice.

Today’s journal entry title song quote is from “lovely.” by queer synth pop artist and producer Gregory Dillon, from his 2020 EP “Sad Magic”. I’ve curated a large collection of LGBTQ+ inclusive / themed music and I stumbled on Dillon’s work a few years ago. I love this song.

“I Did All My Best To Smile”

This week there was Marvel news and I’m sure there will be more tomorrow. This excites me. I’m a huge Marvel fan, so there’s that.

I got outside for several walks this week. I’ve lost weight. I was actually thinking that I weighed 207 pounds in March, but it turns out, I actually weighed 211 pounds then – and I now weigh under 194, so that’s a considerable amount of weight lost, and I’ve not been doing anything crazy. I’m just making healthier choices in my diet and getting a bit more exercise than I had been. So that’s pretty exciting, because since I’m enjoying this time, I feel like this might be something I can keep up with and not worry about it all coming back, as I’ve heard others talk about. I was originally aiming to get to 180lbs but my program says that my ideal weight 172lbs. It also told me recently that my “metabolic age” was 52, which I thought was fair since I’ll be 52 in just a few weeks, but now I’m down to age 51, so I’m assuming that’s a good thing? I’m so clueless about this stuff. But that’s just what I make sure to tell my doctors. Treat me like I don’t know anything, because if it relates to food or exercise, I probably don’t know much! lol But I’m doing great. And I think I’m finding a good balance between what I love, what I enjoy and what is good for me. It’s not about giving up everything, it’s about balancing it out with other options, which I also like. My snack plates lately are all fruits and seeds and things, but I legitimately didn’t notice or think about it until Aaron pointed it out to me. I just thought they were fun choices. lol Oh, and I’m cutting some sugar from my smoothies now; putting 3 quarters of a cup of fruit in (instead of a full cup) and then using a quarter cup of zucchini, which is great for you, apparently, but which I’d never had before. I can’t taste a difference, so that’s great.

I’m so fucking tired. I woke up at 2am when Aaron got up for something. And then I realized that today was Brian Lounsberry’s 50th birthday. Or it would have been. And then I knew I needed to write something and I got up. And I did write something. And also rewrote an older poem that I’ve often referred to, but have never been truly happy with. So that’s accomplished. I should probably be trying to write this in some semblance of order.

Monday we got the first “Avengers: Doomsday” trailer, which I posted. Excited for that. Tuesday we got the final “Spider-Man: Brand New Day” trailer and I’m excited for that. Later I took the train to the park and then walked home, which is about a mile.

Tuesday (July 21) I had therapy that went well. I’m sure there was some kind of drama that day but I can’t remember what it was. Oh. And we watched another Star Trek: The Next Generation episode (S03E10 “The Defector”) – which we both enjoyed and had both forgotten most of. Indeed, I had mistaken the plot in my head for a completely different subplot from a different Trek episodes (S06E14 “Face of the Enemy”), which in my defense, also involves the Romulans and a defector, but in that case, it’s a human defector who joined the Romulans and returns to the Federation – I remember that actor and that story and assumed that this Season 3 Romulan episode about a defector was the same thing. But it wasn’t. lol So that was kind of funny.

Wednesday (July 22): Aaron went on a walk with me. We went to Starbucks on our way home and the barista complimented my “whole vibe”, which I’m not sure I thanked her for, which makes me feel like a jerk. Really, I’m just caught off guard when people compliment me.

Thursday (July 23): I went for a walk. There was plenty of drama though. We’re going to Florida next week, but it’s quite a lot of stress for me as I’d rather not travel and I wasn’t planning on going at all, but the trip got moved up and if I want to see Spider-Man with Aaron, which I do, I have to go. And there are issues with me going but we talked it out and we’re reducing the risk of all that as much as we can – and if it’s bad, I’ll either come home earlier, or go to a hotel or something.

Later I rewatched “Thunderbolts*” for the first time since seeing it in theaters. I think I enjoyed it about the same as the first time, but I forgot how much I cried during the second half, so I was bawling for awhile. lol Then right after that, Aaron and I watched the new Season 4 premiere of Star Trek: Strange New Worlds (S04E01 “Valles Marineris”), which we both enjoyed, despite both of us being a bit distracted by other things.

Also, someone betrayed Aaron this week. I’m sure he had his reasons, but it was really horrible and I knew that Aaron was hurt but I didn’t think there was much that I could do. On top of that, it left him in a very precarious position as far as his company is concerned, but that was solved in a truly gracious manner that I will forever be grateful for.

I went to bed after Trek, going to bed around 9 and drifting off around 10. And then Aaron woke me up around 2 and now we’re up to date.

I’m going back to bed.

Today’s journal title song quote comes from “Song to the Siren” by various different bands that I enjoy, but the most popular seems to be This Mortal Coil; but it was written by by Tim Buckley and Larry Beckett and released by them in 1970. The version by This Mortal Coil was released as their first single in 1983 and then on their album “It’s End in Tears” in 1984.

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