Friday, June 30, 2017

6th of Tammuz 5777

The beginning of Tammuz, or Rosh Chodesh Tammuz, was last Saturday night. (1st day being on Sunday.) The month is 29 days long. There's a minor fast day on the 17th of the month. There isn't any other holiday during that month. 

Had an appointment with my primary on Wednesday. It was really frustrating. She contradicted herself numerous times, and was saying ignorant things about it. The appointment could have been half as long. She did eventually give in to getting a referral to see a gastroenterologist, blood work as long as it's close to when my new gastro appointment is, and gave me a prescription to try for sleep. I apparently tried that med in 2008, but don't remember taking it. The blood work and med were like pulling teeth for her. 

She didn't understand at first why I would need blood work. She must not have that many patients with autoimmune diseases. She did mention she had some patients with chronic illnesses, but that's not really the same. There are a lot of different types of chronic illnesses out there. She didn't say they specifically had an autoimmune disease. These types react differently, are lesser known about, and have certain symptoms.

Also, I've been off of azathioprine for roughly 2 months, and haven't had blood work done in about 3 1/2 months. It's very important to monitor things, especially when you're not on anything for it. This means I haven't had anything to suppress my immune system, nothing to keep the inflammation down, and nothing just keeping me stable (even when in remission). This is serious stuff. Without an immunosuppressant, there's no stopping my immune system. Nothing to keep it in check. It's like I'm fighting myself.

She also said that I'm too young for a biologic when I brought up remicade. Nope. Even kids have to be on it to stay alive. It's heavy stuff, but they're my last treatment option besides surgery. I think there are quite a few options with biologics, though. Without anything, I'll inevitably end up at the hospital. Even if I'm in remission right now, when it flares it's going to be far worse than if I was taking something. I wonder if she wants it to get that bad with the way things went down this time. 

She also lectured me about fatigue and exercise. Exercise will not help the type of fatigue I have. Of course, there are many benefits to exercising, but it doesn't help in this area. It's a big thing for IBD patients. Scientists are researching on why this is currently. It's also common with other autoimmune issues people might have. It's not like you're just tired for a brief period of time. It's a constant feeling of being drained, having a hard time finding the energy to do things, etc. Some are so tired they can't sleep. 

I have this sort of fatigue, but the pain has been keeping me up. I'm getting less and less sleep. This adds to the fatigue, and feels like an endless cycle. Haven't had a regular night's sleep in just over a year. That can really get to you. Doesn't help with healing, either. I feel like a mess with just this stuff. I like how she ended it by saying my case is too complicated. Well, try living with this stuff...

Went to Seattle Trans Pride on Friday. I didn't have any agender or non-binary stuff to represent people like me. Marched in the parade. There were so many people there! It was quite something to see. I liked seeing all the rainbow flags on buildings along the way. Some people were cheering, too. Afterwards, we went to the booths. There were some interesting groups behind them. There was free candy, which is always great. 

One of the many reasons I wanted to go was to see if there was a non-binary or agender group. Non-binary's a huge umbrella term for anyone who doesn't identify with being just strictly a man or a woman. This can include genderfluid, pangender, androgynous, demigirl/demiboy, and so many more identities. This includes agender people. Non-binary is under the trans umbrella. However, some non-binary people don't feel comfortable with that. Like, non-binary is it's own separate thing. This seems more rare, but some agender people don't even feel comfortable with being under non-binary. They don't have a gender, so to them they don't belong with people who do. It's kind of confusing. I personally feel we are under non-binary, and trans (I'm slowly agreeing with this part), too. Most people think being trans is binary, so it can confuse others. Many people outside of the trans community think you have to be transitioning, too. 

Anyways, there apparently is a non-binary group in Seattle. I tried talking to them, but it was difficult since they were right next to the speakers blaring out loud music. They said there isn't a group closer to me. If I sign up for their newsletter, and write a bit about myself and the county I'm from; they'll try to get me in contact with others like me. It'd be cool if there were other agender people living near me. The newsletter sounded interesting, too. 

On Sunday, I went to Seattle Pride. It was a hot day at 93 degrees. Not the best weather to march in. It was the first time the local Pride group had a float in the Seattle Pride parade. I wore my ace flag as a cape. I tried to dance, but I probably looked silly. I saw one person with an ace flag from another group that was marching. I couldn't say hi, because someone wanted to talk to me right then, and they suddenly disappeared. There was another person with an ace flag in the crowd. They seemed happier and excited when they saw me. Couldn't talk to them either, though. 

I did have a few people ask me about the flag. Interestingly, someone thought it was a gender identity. They even said us trans people have to stick together. Based on the flag, it doesn't tell people their gender at all. It's a sexual orientation. They felt bad afterwards, until I said I am agender. 

The agender flag looks even more cumbersome than the current aro flag. The ace one has 4 stripes, aro one has 5 stripes, and the agender one has 7. Why couldn't they all be 4? I feel like the aro and agender flag look very similar, too. The current aro one has green (for aro), light green (for the spectrum), white (for friendship and other forms of love besides romantic), grey (aces), and black (sexuals). The agender flag has black, grey, white, green (more like bright green), white, grey, and black. They represent: black and white for complete absence of gender, grey for semi-genderless, and green for non-binary gender. By the way, the non-binary flag is: yellow for those whose gender's outside of or without reference to the binary, white for those who have many or all genders, purple for people who feel their gender is between or a mix of male and female (sometimes seen as gender fluidity and uniqueness of non-binary people), and black for those who feel they are without gender. Apparently agender might fall under the genderqueer umbrella, too. That's green for those outside the gender binary, white for agender and gender neutrality, purple for those whose gender is between or a mix of male and female. Crazy. Almost like people weren't sure where to put us.

I think I want to find little aro and agender flags at the local Pride fest. If they're not there, I think I know where I can find them online. There's a site that has stuff for almost every identity. It has clothing, keychains, flags, iPhone covers, etc. I might just peruse it in the future anyways. I like that I can represent my identities, and I want to be out with them. Also, I feel strange to split them up, since as a whole they make up who I am. So, if I only represent being ace, what about the other 2? I guess I have a lot of intersectionality going on.

I was too exhausted to go to the fest part. As we were waiting for something, someone went up to me and asked where I got the flag. They seemed disappointed with my answer. I'm wondering if they were ace, and they're not open about it yet? They were quite a bit older than me. 

I like learning about the older generations, and have read about it from older members of the fb ace groups I'm in. AVEN has quite a few, too. They even have a separate section for older aces to discuss things related to that. I think the oldest one I saw out of both was around 75. They have quite a different experience. Many of them haven't had very pleasant ones. They didn't have a word for it for so long. Some people used to identify as bi, because they thought that was the only other option besides gay or straight. The bi community was very welcoming, as well. What little history I've learned about aces has been very interesting. In many aspects, we've actually been apart of the LGBTQ+ community since the beginning. Some homoromantic aces identified as gay or lesbian, because they didn't know where they really fell, either. They knew they were attracted in some way to the same gender. Some older aces actually seem bitter about a lot of stuff they've gone through. Some seem to be envious of the younger generations. It's easier to figure out this stuff now, because of the internet and there's a known name for it. They didn't really have the internet when they were growing up. There also were no known activists for it. They had other issues if they were aro on top of that.

Today marks a year since I came out on fb as ace. I had fully realized a few weeks beforehand. I was nervous, and it took a while to talk myself into it. Most of my friends and family are fb friends of mine. So, I realized lots of people would see it. Then, I thought: You know, I shouldn't care what other people think. I should just do it. I also wanted to do it since I was going to start posting ace stuff. I got a lot of love and like reactions. Positive comments, as well. Nothing negative, which was great. I hadn't looked into my romantic orientation yet. I didn't realize that until the end of October or early November. I was really hoping I'd be heteroromantic. Then, I was hoping for demi-heteroromantic when I thought that wasn't quite right. I really wanted to feel 'normal' or like the 'majority' with this part of myself. Nope, I'm most definitely aromantic. About as aro as you can get. Not even on the spectrum. Now that I know I'm also agender, I seem even more out there. Agender stuff is even harder to find. (Stuff like news, communities, info, memes, etc.)

For the 4th of July, the local Pride group will be marching in one of the local parades. Kind of like our local slice of the Pride parade. There are a lot of different groups that march in it. I'll probably wear my flag again. Our local Pride fest is on the 15th. I'll try to print off a flyer for the ace group, and info pamphlets about asexuality and aromanticism. Might need more ink for my printer, though. Not sure if I'll wear the flag at this one. There is a local LGBTQ+ film festival, too. I don't think I want to see anything they'll show. Many seem to represent the LG part. I think there was one or two trans movies listed. There aren't that many movies available that represent other identities. The ace group meets tomorrow, but no one but me has been showing up for a while. That might be different after Pride. I might put the only printed copy of the flyer I have at the moment tomorrow at the cafe. Might get more people this way.

The memoir is really coming along. The sequel to Alliance has been a little slower. Makes sense, since the memoir pretty much writes itself. It's all based on events and memories from my past, and how I feel about things. The material's already there. With the sequel, it's not. There's new stuff, and I don't use an outline. I grow the story on what already has taken place. Sometimes this can really flow and it can come along quickly, other times I have to 'create' new aspects of it. It's weird, but fun. Takes longer, too. I still haven't come up with a new building name and some new character names from the beginning of this one. It's turning out to be interesting so far. Maybe more so than the first book. At some point, I should come up with titles for both books. I do have some ideas for the memoir. Not much for the other, though.

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