22nd of Iyar

My mom's yahrzeit (Jewish anniversary of her death) was on the 9th of Iyar or May 14th this year. I forgot until it was the late afternoon, so didn't light a yahrzeit candle this year. I think she'd understand. We did 'visit' her and went to places she liked on May 1st, the regular calendar's anniversary. I had hoped to keep up my blogging more often again, but that hasn't worked out so well this month. 

Agender Pride Day was on the 19th. Again, an agender person is someone who doesn't have a gender. I didn't see many people putting it out there. Even in some of the LGBTQ+ pages I follow. Saw it briefly mentioned in an enby group on fb. It needs more visibility next year. There actually aren't many pages or groups on fb that are specifically centered on agender people. It feels like there aren't that many agender people in the enby group I'm in. They're mainly genderfluid.  

I wanted to join agender forums too, but there really aren't any. The neutrois forum I saw not long ago (which helped me realize) isn't active and is primarily archived. Good for looking up info, but no actual community on there. Neutrois is different, but they also had an agender side to that forum. It was a mix. Neutrois is a neutral gender. It does not mean they are without a gender, just that they are 'neutral'. 

Agender is aka genderless, genderfree, gendervoid, gendernull, and more. Agender seems to be the newest term. There are agender people that are slightly masculine or feminine. Of the small amount of agender people in that group, most seem to be like that. I'm neither. Absolutely no masculine or feminine sides to me. To me, those are more like styles, I guess? 

It was World IBD Day that same day. Their theme this year was making the invisible visible. IBD is considered an invisible illness, since most of it is internal or people are good at hiding the extraintestinal manifestations. Extraintestinal manifestations like arthritis, rashes, swelling, mouth sores, eye inflammation (multiple types), bone thinning, kidney stones, liver issues, anemia, and more. I've had malabsorption issues that contributed to things like my nails becoming more brittle, hair thinning, ankles swelling, and weird rash spots on my legs. We can look perfectly fine, but inside it's a completely different story. We're also more likely to develop colon cancer. 

Patients are often discriminated against, too. Some use handicap parking spots, and since they look 'fine' people hassle them. There are those that are denied restroom access, which can turn into a humiliating and frankly unsanitary event. Some avoid going out because they're worried they won't find or be able to use a restroom. Some are chastised for using a disabled (or I think some call it family) stall. Some patients need that extra space to empty their stoma bags and clean up. People have resorted to getting cards that have info on why they need to use an employee restroom (if there aren't regular ones), disabled stall, and those parking spots. Basically to prove it, which is kind of disgusting that they'd have to go that far. If people ignore the card, and they can't get access, they could sue them. 

Had my first rheumatology appointment last Tuesday, which also happened to be what would have been my mom's birthday. I was really nervous. I wanted to go through all my symptoms, making sure to correctly describe them, and remember to ask about certain things. I didn't get through all of the symptoms, since he asked a few questions on each one I brought up. 

Here are most of my symptoms: My muscles and joints are sore/stiff and weak, there are rashes on my eyelids and forehead (can't tell as much, but suspect that my scalp, part of my nose, and parts of my ears have them too), really itchy scalp that feels like it's on fire (burns more when I scratch it, so it's an endless cycle), hair loss (starting to see very small bald patches), lightheaded, jaw pain, earache, dysphagia (trouble swallowing), tongue pain, feeling really full despite not eating, less of an appetite, crook of elbows both have a weird bruised/cold/partially numb feeling that is especially painful at night, losing flexibility in a couple of fingers (surprisingly annoying when it was a pinky finger at first), weird hard bumps on some finger joints, nausea, occasionally hard to breathe, cough a lot at night, both knees feel painful and partially numb, spitting up very thick balls of bloody phlegm. It's a lot. 

He kept saying sorry every time I winced in pain while he was doing a physical and checking how my joints and muscles were. I'm going to be in pain whether I saw him or not. He told me that muscle pain and tenderness isn't common with dermatomyositis (dm). Yet, all the articles I've read so far say it's very common. It makes sense that it would since their muscles are being broken down. Reminds me of when I was told by one of the GIs that patients with IBD don't usually feel pain. One of the main symptoms is abdominal pain...In the many IBD groups I'm in on fb, everyone has said they were in pain. Even while in remission, which is true for me. The scarring of my colon causes more pain than I thought it would.

He's not sure about the rash. The eyelid rash he showed me seemed like an extreme case. The main pic that pops up in a search looks an awful lot like mine. I even showed him the pics I took last month. He was surprised by them. He tried to look at my scalp, but I still had so much hair that he had a hard time seeing anything. He didn't say anything about it, either. 

He briefly said that lupus might be a possibility, but spent most of the time bringing up fibromyalgia. Even gave me a 15-page info pamphlet on it. I noticed after reading some of it that they do that to prepare patients for the possibility that all the blood tests will come back normal. I don't think it's lupus or fibro. Neither would make sense to me. Plus, not all my results have been normal. The C-reactive Protein (for inflammation) was high, and ANA screen (for autoimmune diseases) was a strong positive and had an unusual pattern. 

He did order a bunch more blood tests. Many testing for certain protein enzymes, antibodies, Sjorgren's, a myositis panel (there are other types of muscle diseases), and a rheumatoid factor. So far, they've been negative or normal. There are still a few more. These tests are mainly used to narrow down the possibilities. They may need to do imaging like an MRI, ultrasound, electromyogram (like an electrocardiogram, but for muscles where they measure their electrical activity, as well as the nerves), or biopsies. 

He referred me to their Speech, Language, and Learning department for a modified barium swallow exam to look more into my dysphagia. I made an appointment for it next month. It sounds like an interesting test. I don't have to fast beforehand, and there won't be a copay. A speech pathologist will be observing while the radiologist runs it. I have a feeling I might have to see her for a follow-up. They gave me her name. I think he mentioned it'd be good to see one since they can help me with my dysphagia. They have you stand for 10 minutes for the first part. During that they give you drinks and food infused with barium, tell you to eat/drink them, and they take images (not sure if there's video...That would be cool) at the same time. The barium makes it visible in the images and easier to see what goes on while you swallow. There are a lot of muscles in the throat and any one of them could be involved. They watch each stage of the swallowing process. I've read that treatment for dysphagia often depends on what part is not working correctly. For the 2nd part, you lay on a table on your belly. They ask you to do the same thing. That's going to be uncomfortable. I could see why they'd want imaging with different positions, though. 

He also referred me to their Dermatology department. I tried to make an appointment, but they didn't have anything until October. He wants me to be seen sooner and that seems like a long time to wait. So, they gave me the names of 2 clinics they contract out-of-network with and their phone numbers. If they have something sooner, I need to call Dermatology again and have them send a referral. He wanted a dermatologist to check out my rashes, hair loss, and scalp issues. I might call Dermatology again and ask about appointments for other locations. They had me call the Silverdale location before, but maybe the other ones will have openings sooner. 

I made sure to ask him about prescribing something for the pain. This is difficult. I've been told to avoid NSAIDs, because they can trigger a colitis flare. Opioids have a similar affect. Sometimes they prescribe antidepressants for pain. I take Lamotrigine, which keeps me well balanced and stable. It's technically an anticonvulsant, but it can have negative interactions with antidepressants. I really don't want to mess with that. So, he left it up to me to decide. I went with an NSAID. I'd rather have a colitis flare than mess with my mental health. 

I was prescribed Celebrex. It's an arthritis painkiller. He put me on the lowest dose possible: 1 50mg capsule twice a day. (They're so tiny!) Understandable. The site for it suggests you start out at that lowest dose, plus I think he wants to see how it affects me. If I flare, maybe it won't be as bad with such a low dose. They say I won't get the full benefit of it until around the 2 week mark. So, I still have to wait and see. I think it's helping a little. 

Finished Duolingo's Korean course yesterday. Also, made it to the sapphire league, which is the 2nd to highest league. Yay! It goes bronze, silver, gold, sapphire, and I don't know the highest. You get 'promoted' to the next league if you're in the top 10 at the end of a week. It's based on xp you've earned. Every lesson is 10xp. I barely squeaked by at #10 yesterday. 

Their Korean course was awful, but not awful enough to drop it like I did with Russian. The 'correct' translations of sentences had very poor English grammar, which made it harder to answer correctly. Made it very awkward. There were no speaking exercises. That's important to have. Sometimes the recording of the speaker wasn't clear. I did learn quite a bit. I can read the alphabet now, too. 

Since I started learning a new language every 3-4 months, I've studied German, Chinese, Italian, and now Korean. Chinese was the only one that wasn't through Duolingo. It was through HelloChinese. They had a really amazing course, which would have been great for other languages, too. Duolingo should take lessons from them. I'm thinking of starting Dutch today. I've had ancestors that came from the Netherlands, so that would be interesting. Of the Germanic languages, Dutch is considered the closest to English. It's a lot like German, which I also liked. They're more likely to have speaking exercises.

Managed to start coloring in the full body drawing of Shadow last week. It's a bit difficult figuring out exactly what colors I want in Photoshop. I might shade it a bit, too. Also, managed to edit up to chapter 17 of Alliance last week. I think there are 20 chapters, so I'm close to the end.

Dropped Perfume on Netflix. It's a German detective show based on a novel. It had way too many sex scenes. That's saying a lot. I normally can just look away and wait. I don't particularly like those scenes. It's like some of these shows couldn't come up with anything, so they just threw in those scenes to fill up time. The story was interesting.

Black Summer on Netflix was surprisingly good. It's a zombie show. Hope they make another season, because it really didn't have an end. 

Dramaworld on Netflix was very interesting. The main character is played by the same actor that played Abby, Sheila and Joel's daughter, from Santa Clarita Diet. They recently came out as non-binary, which is cool. Nice to see them in something else. Anyways, this was basically a Korean drama within a Korean drama. The main character, who's American (the actual actor is Australian) and doesn't understand Korean, gets sucked into Dramaworld. It's where all the K-dramas come from. She's a huge K-drama fan. She has to save their world. She can understand the other characters because they're subtitled for her, and they can understand her since she's subtitled for them. Although, the 'leading' man knows English and mostly talks to her in it. The person who introduces her to their world, is also from the 'real' world. He hands her a book of rules and tells her that they facilitate characters. They make sure things go smoothly. He speaks both English and Korean. He played a really good villain. It basically mocked (in a fun and lighthearted way) K-drama cliches. I don't know too many of them, since I haven't seen many K-dramas. Especially, romantic ones. A lot of them were similar to ones in J-dramas, though. In their world, every time a woman's about to fall, a man is there to catch her. Although, that rule was broken once. There's an obligatory shower scene of the leading man. If a woman saves a man, the man falls in love with her. Same with the other way around. Random drunk women jump on the backs of men they don't know, and the men carry them home. It partially reminded me of Westworld, too. The only thing I didn't like was how short the episodes were. They left it wide open at the end, too. They should make a 2nd season. It was a collab between American (plus that one Australian, who acts in American shows) and Korean actors. They also shot most of it in South Korea. Seems more authentic that way. 

I'm almost done with watching Slasher: Solstice on Netflix. It's the 3rd season, and every season has a different story. First season is just Slasher, 2nd is Slasher: Guilty Party. It's a Canadian horror/detective series. They recycle some of the actors from other seasons, but they play different characters. This season's apparently based on real murder cases. Makes it a bit scarier that way. I think it's been even better than the other 2. Every season has had at least 2 LGBTQ+ characters. This one has a lot of them. There's even an ace character. They showed the process of her figuring it out after a bi character suggested it. They even mentioned it. This seems like a pretty big thing. Especially in a series that's popular enough to get 3 seasons. There's quite a lot of sex scenes, but not nearly as much as Perfume. I can at least ignore it in this one. It seems a little different to have mostly LGBTQ+ characters in those sort of scenes. The ace character even has sex. That shatters a stereotype, so kudos at least on that front. She also has a boyfriend she seems romantically attracted to. Often a stereotype with portraying ace people in media is that they're aro and not interested in dating or being in any close relationship with anyone. It would be cool to see an aro ace character in a qpr in main stream media, but I think that's too 'out there' for people. It tackles some tough topics like LGBTQ+ hate, racism, Islamophobia, and more. The majority of the cast are people of color. That's cool to see. The murders are really brutal. I'm still unsure who the killer is. They're hiding it a lot better than they did with the other seasons. Most of my guesses have died already or weren't around when some of the murders happened. I do think there are 2 Druids. The killer's referred to as the Druid. The first one committed the first murder a year ago. The second one's been killing a lot of people on the anniversary of it. Seemingly people that were related in some way to the first murder. They seem a lot more calculated, cruel, and planned with the second killer. That's my theory anyway.