This holiday was yesterday. Tigers are one of my fave animals. More specifically, the white Siberian tiger. It's a day to raise awareness for tiger conservation. It was created in 2010 at the Saint Petersburg Tiger Summit.
I forgot to mention last time that I got new jeans. I was wearing my oldest pair for a while beforehand. The ones I mainly wore on laundry days. The 'newer' pair had a huge hole, so they had to be thrown out. They were also a couple of years old, the oldest pair was a few years older. I'm still in the 'Misses' department instead of 'Women's'. Women's is for the bigger sizes. Yay! I've gone back up a size, though. The pair last time was the same size I was in high school. Maybe keeping up with adding more exercise will help.
I've decided to switch up my strategy for my walks. I thought just before dinner would make it easier. However, that's often around the time when it starts to cool off during a hot day. It's often still too hot for me. So, I decided that right after breakfast or brunch would be best. It's usually not too bad then, and it'd probably fit for any season. I remember in the past I'd get up early enough to do one of my walks around sunrise. Easier to do that during winter. I'd also take a walk at sunset. This way I'd have incentive to go out. Might change to that sort of thing during fall and winter. If I do it after breakfast, I might be able to motivate myself to go again later in the day, too. I started this new way today. Was going to yesterday, but I was doing laundry for most of the day. Went out for a while for shopping and dinner. Probably got enough walking in with just that stuff anyway.
I thought about planning my meals for the week on Sundays. This way, at least for dinner, I wouldn't waste time thinking about what to have. I can plan out those Pinterest recipes then, too.
There have been 'new' visible symptoms of whatever's going on lately. I've had a weird blister-like or 'waxy' patch on one of my fingertips for a few months. It started small and barely noticeable. Mainly it was through touch, not much to see. It's grown and thickened over time. Much more visible and almost looks plastic-like. Takes up roughly 3/4 of that fingertip now. I've started to get more on other fingertips. They seem to be growing and thickening faster. They don't necessarily hurt until I grip something with them. Then, it's a searing pain. They're not callouses. I definitely know what those feel like on my hands. They're quite different.
My knuckles and skin have gotten shinier and tougher. I've also found lumps near some of my knuckles. They're growing. Most of the time they don't hurt. They just feel weird. There's another lump on the back of my neck that isn't growing, but is bigger than the others. Wonder if that's an enlarged lymph node?
I've also been getting weird flakes coming from the edges of my right eyelid. It seemed like it was around my tear ducts, but the flakes are slowly coming out of the upper middle edge area, too. I don't think I have ducts there. They're getting bigger and harder to pluck out.
Looking most of this stuff up, it seems I might have scleroderma. (Sclero is lit. 'hard', and derma is 'skin'.) It seems to fit even more than when I thought it was dermatomyositis (a skin and muscle disease). Especially, with these newer symptoms. It tends to start with joint pain, joint swelling, redness on the face and scalp and other areas, and muscle pain/weakness. That's how mine first started, that I know of. It often progresses slowly at first, and is misdiagnosed at the beginning. I haven't been tested for it yet. One of the few that I haven't had.
I almost wonder if I've been experiencing symptoms for longer. It can also cause collagenous colitis, which is a type of microscopic colitis. It's a more rare form of IBD than UC and Crohn's. A collagen band wraps around the colon while it's being attacked like colitis in general, with the ulcers/sores eating away at it inside. It creates scarring in the colon, too. The GI that told me there was a lot of scarring in mine was slightly puzzled at first by it. It would explain that. It also can cause LPR or larynpharyngeal reflux, which is what they said I probably have. It can cause dysphagia, too. It can affect the lungs, which makes me wonder about the lung issues I had a long time ago. It stiffens and hardens skin, blood vessels, the lungs, heart, the digestive tract, etc. It would explain a lot if that's what it is.
I plan to make an appointment to talk about this stuff with my primary doc soon. At least someone on my 'team' will know about it. My next rheumatologist appointment is at the end of September. That's a long time, but it's the soonest they had. I plan to make an appointment to see a dermatologist, too. Hopefully, it'll be for sooner and they might be able to help before that other appointment.
I plan to get back to playing my clarinet in September. My hands are still in a lot of pain, and I think my circular breathing is a bit more difficult now. Hopefully, it'll either calm down more by then, or I'll be on some sort of treatment to help. Even if it's the same, I'll try to push through it, but not push myself too hard. Hard to find that balance. I'd like to work up to practicing for an hour each time, too. Haven't played since February, because of this stuff. Long time for me. When I was playing more regularly, I thought it'd be great after a certain amount of time (playing more up to par) that I'd listen to recordings if there are any of the pieces I play. After a while of doing that and playing those pieces again, I was thinking of recording myself. Then, I'd play it back and try to correct things more. Eventually, I'd post the more 'perfected' recordings as vids to youtube. I don't want to share an actual vid of me playing. I'd probably mess up. It'll be interesting to read the feedback from it. I'll have to filter out the trolls.
I'm also thinking of doing my own vlog on youtube in September. I tried once, but my phone wasn't the best for it. I now have a webcam built into my 'new' computer. (It'll be a year old this October. I think that's still new.) I've never used it, so it'll be something to test out. It should be better. I've always had a weird thing about seeing/hearing myself in media. Even after losing so much weight and having my hair styled the way I want. This might help with that. I'll do an intro vid, then some vids about what some things mean (like aro, ace, etc.), details, and my story with things. Then, either go over topics people ask about or updates on my life. Some ideas for it, at least. I'm thinking of doing it once a week like many youtubers.
I want to be more observant, so I'll try going in steps. Little things at first like, at the very least, lighting the candles/blessings at the start of Shabbos (Friday night). Doing that either before dinner at home, or if I eat out, when I come home. I can have my own services with the siddur or prayer book I have, or follow online streaming ones. The online one I tend to use the most is Central Synagogue in NYC. Might try others in the future, but it's a beautiful building and I like most of their services. They stream them live every Friday night and Saturday morning. So, you know they're consistent. They're archived, too. So, if you miss when they streamed it, you can still catch it. That's handy considering they're 3 hours earlier. Start with doing the Friday night ones every time. Then, add Saturday morning ones. Read the weekly parsha, eventually do Havdallah (the ending ceremony), and more. The siddur I have also has weekday prayers. More observant Jews pray 3 times a day. (Morning, afternoon, and evening.) I might add that, too. They're shorter than the ones for Shabbos. We'll see. I might add in the blessings before and after meals in the distant future, as well. I've just been off and on with Shabbos stuff. Sometimes I'll go for a few months without even lighting the candles. I feel I need to change that. I'll also try to cut my social media time more that day. Eventually, it'll be great if I stayed away completely from it then.
Since I've been immunosuppressed, and my current med works similarly, I've stayed away from going to shul. (Shul is Yiddish for synagogue.) I felt weird about our local ones as it was at the time, anyways. The last High Holiday services I went to, which was just after starting my 1st med for colitis (azathioprine, which is a strong immunosuppressant), I was very sick afterwards. I think that was the last time I went to services. I'm not taking that risk in the future. Even if I did things like put a high-grade hospital mask on and sat as far as I could from people (and told them not to hug me), it wouldn't seem right. There's also still that risk. I feel even more nervous then before when I'm in a very crowded room in general because of it. Before being on immunosuppressants, I only had to handle having agoraphobia, which is bad enough.
I'm going to try and cut down on social media during the rest of the week, too. It's just felt like too much. I still want to stay on top of it, so I'll go through it occasionally. I'll time it in small chunks. I'll always check notifications if I have them, and will post personal stuff like statuses, my blog posts, art, check-ins, etc. the rest of the time. I might go through more of my feeds when I'm waiting for food or something. This will help a lot. It already has a bit this week.
I got my haircut recently. I was hoping to get it dyed at the same appointment, but they didn't have the time. They cut it a little shorter than I expected. I told her shoulder length, and she did it a little shorter. Took off 6" or 7". About 4" or 5" of that was from the 7 months in between. It's been growing faster than it used to. It's falling out a lot more than it used to, as well...Makes it feel a little weird. The bald spots still aren't that visible unless you lift up certain patches of hair. A shorter style is good for the summer, but next time I might say a touch passed the top of my shoulders. They had a 'color consult' at the end. I want to have purple, green, and blue in it. I imagine those colors being a mixture throughout. Hard to describe, I guess. I was able to show them something similar from a Google search in pics. Some call it a mermaid style or oil slick. They'll bleach my hair first, then tone it and add color. Everyone there sounded so excited about it. Even about the concept. Those 3 colors are in the LGBTQ+ flags I'm under. They told me they get a lot of enby clients that get theirs dyed. For many people it's a thing because that's what they can have control over, and may be able to afford more than the medical stuff for transitioning. It'll be my first time, and I wanted something different. Also, the hair loss makes me feel like doing something fun with it for the time being. Getting more of those white hairs, too. Lots of reasons for me, actually. They told me it'll take 4 hours. That'll be interesting. I'm having it done next month.
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