International Tiger Day!

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.

13th of Tammuz

Sunday was International Non-Binary People's Day. Since I'm agender, I fall under the umbrella as well as the genderqueer and trans ones. Enby is a popular shortened form. Apparently, using nb is controversial. Yet, they sound the same. Some find enby too cutesy. I like it, though. 

Agender means I don't have a gender. Despite not having one, I think it's amazing to learn about all the different genders out there. It really gives a broader look of what makes us human. Men and women are only a small sliver of them. I think a lot more people would realize they're enby if they were introduced to it. It's still not talked about seriously that often. 

Bigender's another one. They experience 2 genders at the same time. That can be any combo. Man and woman, or man and an enby gender, woman and an enby gender, 2 enby genders, etc. Similar with trigender, but with 3. Pangender (meaning all genders) is controversial, considering there are genders that only come from certain cultures that people can experience. Like, 2-Spirit for Native Americans. Polygender (many genders) has been more accepted recently. Genderfluid's when people are fluid through genders. So, for a time they might be a woman, later a man, then agender, etc. They could flow through many genders, not just related to the binary. There are genders that only intersex people can have, too. 

Apparently, in the past, Judaism had 6 genders. Although, it was more related to sex. Looking at it gender-wise, I think according to that I'd be considered a tumtum. They were told they should try to fulfill all of the mitzvot. Mitzvot are commandments, but they're more like good deeds. There are 613 of them. Traditionally, there are some that man are permitted to do, some women, and the majority of them everyone's encouraged to do. Of course, it's ok for either gender to do the other's mitzvot, but that's considered doing more than they need to. Tumtums apparently also could step in for many different traditional roles. I'm sure people of many different genders would have been similar. It'd be cool if we went back to a multiple gender system.

There are also some genders within or related to agender. Demigenders are considered apart of it. They could be demiboy or demiman, or partially a boy/man. Same with demigirl or demiwoman, and many other enby identities. There are also some that are slightly masculine or feminine leaning. Personally, I'm not partially any gender. I don't have a masculine or feminine side. I just am. 

We got a new TV. It arrived today. A TV stand will arrive soon. We got a new receiver, too. So many new things! It might be a pain taking down the old TV stand/furniture, put the new one up, take out the old TV, and put the new one up. Somebody's coming by to help with putting the TV up. That'll be great. My wrists and arms are still not doing great, and I have a hard time picking up things sometimes. This is 70 lbs, so I don't think I could help. We needed an upgrade. The current TV is around 10 years old. It's time. The receiver and stand are older. Both the receiver and TV sound much more advanced, and will probably give an even better experience. 

Made a 2nd recipe I found on Pinterest yesterday: Crockpot Sausage and Potatoes. Seem to be following that at least 1 or 2 recipes from Pinterest each week so far. Although, it's only the 2nd week...It called for pork polska kielbasa. Instead, I used the beef version. They wanted me to use 28 oz, but I used 24 oz. They were 2 huge links. It was plenty of meat. It used frozen shredded hash browns. They had me let it defrost for 2 hours. It was still somewhat frozen by then. I was able to chip at it, though. I thought it wouldn't fit in the large mixing bowl. It seemed to shrink a little after a few minutes, and I was able to fit everything in. The other ingredients were cheddar cheese soup, evaporated milk, and garlic. I wasn't used to using evaporated milk, so that was interesting. It called for 4 minced garlic cloves. I added roughly twice as much. It really came through, which made it even better. That combined with the seasonings in the sausage made it burst with flavor. The cheddar I think made it richer tasting. Maybe enhanced it. It didn't really taste like it had cheese, which is all good to me. Kind of suspected as much, because it didn't seem like a central ingredient. Most of the hash browns turned into mashed potatoes. That was an interesting reaction, and a plus to me. After mixing everything together, which was a bit difficult because of the quantity of things, you add it to the crockpot and cook it on high for 3 hours. That's the only thing I don't like about crockpots. The wait and smelling it throughout the house in the meantime. It's a good thing at the same time, though. You don't have to think much about it unless you need to stir it halfway through or something. They suggested sliced green onions as a garnish, and adding salt and pepper. I didn't do either. It didn't need anything more. Pretty salty anyways. 

I've decided the last couple of nights to not use the wrist splints. I think I've been sleeping better and a little less painfully since. This makes me wonder... Roughly a year or 2 ago, I noticed a lump in the crook of my left elbow. It's been there since. Checked it out a few days ago and it's gotten much bigger. The crook of my right elbow has a smaller one, but it wasn't there in the past. They're both hard when I press down on them. I'm curious as to if they've grown so much they're interfering with things like tendons. Pinching them off, for instance. That would make sense with my wrist thing. I had a sebaceous cyst in between my spine and left shoulder blade a while back. It's tendrils grew long enough to wrap around things, making me think there was something wrong with my left shoulder/arm. It was affecting my nerves, veins, etc. Eventually, it got so bad I went to Urgent Care. The nurse looked at my back and noticed the huge lump. She took it out, but had to really dig to get most of it. I think she told me it was the worst one she's taken care of. I wonder if this is similar. I would hope they're not dangerous lumps. I'm nervous to bring it up with my primary.

Keeping up with walking most days. Often when I don't do my 2-mile walks, I've already walked plenty while shopping or something. This week I'm doing 15 sit-ups 2x a day. I'm starting to feel those more. 

I've decided that when I get my next haircut I'll dye it, too. The white hairs are coming in more often. Plus, it might be fun. Those white hairs have been popping up since I was in junior high. (I wonder if it's a hormonal thing...) I used to pluck them out. Now it's just too many to do that. I would like to have it in colors related to the flags I'm under. I'm thinking purple, green, and blue mixed throughout. Purple is in the ace, genderqueer, and enby flags. Green is in the aro, genderqueer, and agender flags. Blue is in the trans flag. It would look somewhat sea-like. I don't want white or grey in it, which is what most of the flags have. Another idea would be red with yellow highlights. It'll look somewhat like flames. I'm obviously going to have it done professionally. I've never dyed my hair before. I remember the smell of when my mom would do her own. She dyed it red for decades. It was difficult and that was in an enclosed space. I haven't been following the haircut every few months thing that I promised myself. Last one was around my birthday, so 8 months ago. It's too long at the moment. I've been unsure of it since it started coming out, but a trim shouldn't hurt. It'd be nice to dye it before our local Pride, but that's on Saturday. Not sure if they'll have an opening before then. I don't think anyone would get it, though. I can always explain it. It's cool if it's after Pride, since it's really for myself anyways.