health and sundry

Sometimes I just want to ramble about something and don’t know where to put it… so I’m putting it here. I feel like it’s so confusing trying to track my health. tl;dr because I’m too tired to go into TMI right now but basically I’ve been diagnosed with two genetic disorders which are sort of the same thing? They’re mutations of the same gene, but two different diagnoses, that are sort of like saying the same thing but one is more rarely diagnosed than the other and they have slightly different risks. Anyway, I’ve known about the one diagnosis since my way early 20’s when I got genetic testing. I learned about the second one only about 5 years ago maybe? If that?

I’ve had to do regular preventive screenings every 1-3 years because I forgot to mention my genetic mutation basically 100% causes cancer. It’s less a question of if and more a question of when. I was born with the mutation so I can’t really do anything about it. It’s definitely something you can live through if you catch it early enough and if you get major surgery to remove an organ. Any kids of a gene mutation carrier is 50% likely to be born with the mutation as well, and I have a big family, so lots of people in my family have already gone through the same. Each generation, for some reason, it seems like the mutation becomes more dangerous a decade earlier. So like, my grandma I think got all the shit in her 50’s but fought it off and then later didn’t. My mom’s generation mostly got the surgery in their 40’s. My generation is 30’s.

Where I differ is, at 35, I’m already 3 years older than my brother was when his doctor rushed him to surgery upon diagnosing him. He already got the surgery. I’m actually not sure about my cousins; I tend to know more about my aunts and uncles and mom. But the thing is, every time I had my screening, they said I was mostly fine.

What worries me is I’m overdue for my latest testing. I should’ve gone in at least 1 year ago, if not 2, but I didn’t get notified by my doctor and didn’t realize it had been so long. I only found out because this other doctor I recently started seeing at a new clinic for a totally unrelated (I thought) matter, actually gave a shit about me and asked me lots of questions and looked at my history and told me I was overdue.

So here’s where we’re at now and why I’m in a rambling mood: I’m feeling overwhelmed trying to find a new doctor. Not the great dr I mentioned; I mean one for the screening. The one I had before is fine but I’m realizing he isn’t actually that versed in my specific mutation and genetic issues, and I probably should be seeing someone who knows a bit more about it. He definitely is aware, but he just never really talked in detail about things with me.

So anyway I was recommended this site that tells me a list of medical professionals who are more versed in my specific semi-rare mutation, and it’s a short list, but somehow it’s so hard deciding between people. I thought I knew who I wanted to go to at one hospital, then I looked at the hospital I want to go to and I found a lady there who seems great, and then at a THIRD hospital there’s ANOTHER lady who seems super versed in genetics too. And I’m like, where do I go??? This is the first time in my life I’ve found multiple options of people who may know wtf is going on with me.

The one at the hospital I want to go to seems like she might be good because she has some overlap into other areas I need checked as well, plus she’s part of the same group as the doctor I love, so sharing information would be super easy. But there’s also this lady with the second hospital who’s basically exactly aware of my specific issues and is way versed in genetic clinical nurse capabilities, and I used to go to that hospital years ago back when I first got genetically tested. The third hospital is one I’ve never gone to except for eye things.

I’m feeling overwhelmed, not knowing which is the right choice.

I suppose one way to do further research is determine if there will be a price difference between them, and find out which of them can do the screenings I need, and more. Or I could go to the genetic clinical nurse lady, find out everything I need to have the dr at the hospital I like do, and give them permission to talk.

What’s making me hesitate is I didn’t always have great vibes from the hospital with the well-versed lady, so I kind of don’t want to go back?, meanwhile the new hospital I love saved my dad’s life through early cancer diagnosis and treatment. But the new hospital doesn’t seem to have a whole section devoted specifically to mutations like mine and especially at my age I probably really need someone who knows what’s what.

I’m just rambling, I know… trying to figure this all out seems like so much to me, even though I know it’s dumb.

Also a big problem is my insurance has always billed me full price for the preventive procedures and that’s expensive AFFFFFF so I’m trying to figure out how much I can even afford. New hospital was really helpful trying to help me with coding in the past but I still got hit with a massive fucking bill 10 mos later. Old hospital never did jack shit to help but I don’t remember if I had to pay. Interim doctor I went to who is independent always cost me $2000 each procedure.

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Excuse me while I nerd out

I had two characters I played ages ago in an RPG based originally on Terry Goodkind’s Sword of Truth series until he made it clear he didn’t want any sort of fandom anything online and sent out cease and desist letters. The creators of the rpg (which was a text-based RPG) created a new story that still included magic but had a different system, to allow us all to transition over and to not lose our characters or work.

(Shout out in the very rare chance that someone from Towers of Perdition/ToP and later Towers of Jadri/ToJ runs across this!)

Anyway I had 4 main characters there, but one was a bit of a throwaway and another’s story was very intertwined with my friend who played his brother.

My two favorite characters couldn’t have been more different. One was Trinity who was a bit of an homage to Trinity from the Matrix like it was ridiculous you don’t understand lol She was a renowned thief who I played when I wanted to do the whole dark underbelly of society route. She was amoral in a lot of ways, not an outright asshole but uncaring of her impact on others if it was necessary for her to get what she needed, and she had definitely not lived a sheltered life.

The other was my main character Kyra en-Terrell, who I loved. She was a magic user who tried to be as fair and kind as she could be and who often put others before her. Because I was an OG from the ToP days and by that point I talked to the creators a lot and I often volunteered to help newbies and for a hot second I was also one of the people who built a city in game, when it switched to ToJ I got to advance Kyra into the new storyline at an elevated level. She became the leader of one of the main magic cities that people spawned into. She was fair, just, and often liked to walk around talking to people as equals rather than be sequestered in the palace. I really loved playing her, and loved her as a character, and it was a lot of fun because she was high enough politically to garner attention from various plotlines but she was a very moral person so she could skirt past some of the darker things. Yet there were plotlines where people were trying to manipulate her into certain storylines. It was a lot of fun, especially because playing Trinity as well (who was far less important of a character and therefore oftentimes invisible to others), I got to see the other side of some of those machinations–Trinity knew what was coming, but Kyra didn’t.

Kyra died unexpectedly mostly because of a glitch in the game that I later learned shouldn’t have happened. I should have kept her alive. But at the time, I didn’t want her to miraculously make it through an illness that had killed lesser characters. It didn’t seem fair. So I permanently deleted her when I thought she should die, only to later learn the thing which made her contract the illness wasn’t supposed to have been where it was.

Although I played ToJ for a while after Kyra was gone, it was never the same for me. I missed her a lot. Even more than I expected.

There’s a character in Incarnations’ history who has reminded me a bit of Kyra, that I think I made as an homage to her. She was a beloved leader of Magedom, fighting for equality at a time with many disparate beliefs, but ultimately she was killed because of her efforts for peace. She’s so far in the past of Incarnations that her name is mentioned a few times, and she’s definitely an important part of history, but she can never appear because she’s been dead for hundreds of years.

When working on Incarnations years ago, I needed a character who would be a mentor for a renowned thief. This thief was a bit of an homage to my Trinity character but not by much; mostly in her description and job. She otherwise was nothing like her. Which is why when I realized I needed a mentor for her, I thought of Trinity again and decided this time I would just import Trinity into the world in a new, relevant version for this storyline, to give her new life. She has remained offscreen because that’s her way, but she is relevant to the plot through her protege. I changed her name from Trinity to Trey, to keep with the theme of 3 while not being so obviously Matrix or religious affiliated.

For years, this was the only connection that old RPG had on Incarnations.

Until today.

I needed to name 5 Councilors in charge of a political aspect of the main magic city/Magedom. I already knew one, so I had her written down. Then another was introduced in story so that was two down. The next two I made based on what felt right/made sense. I got to the fifth, and had to pause. I had an idea for the sort of person I wanted to fill this fifth spot, so I was thinking about what name she could have, what her story would be, and so on.

And that’s when it hit me: Kyra was perfect.

She was exactly the sort of person I wanted in this spot, and she would represent exactly what I needed represented on the council. For a second, I couldn’t remember her name, and then I couldn’t remember the spelling. (The way I remembered her name is because back then DS9 was on TV, and I liked the character Kira, so I took inspiration from her name for Kyra’s name in the RPG……. yeah, I know, there were a lot of inspirations/homages going on for my characters in this RPG but I was 14 so I hope you don’t hate me too much lol)

Now I’ve officially been able to import my two favorite RPG characters from ToP/ToJ into Incarnations, and that’s on top of already importing my two favorite RPG characters from a different RPG I played online with friends (the RPG where Sin from ICoS came from initially). This made me so happy! Of course, they change as characters and become different people to some extent once they join this new world. But I’m so happy to be able to give them a space to grow and breathe, to expand, to live again.

Welcome to Wildwood Rising, Kyra. I hope it finds you well.