Oh yeah, I said, life goes o-on

Long after the thrill…etc.

Well, I have PLENTY of thrills, thank you. Like a new Chromebook! Keith got it for me for Christmas, it’s so pretty and I finally have a new keyboard under my fingers after losing my old laptop (who was too cool and old to have a name, I like to think it was an eldritch horror trapped in plastic casing–Cthulu Computer. Anyway, that thing survived way too much to have been a mundane laptop).

Anyway. I have a new computer. And I’m typing on it and it feels like coming HOME. The steady tap tap tap of the keys, the invigorating movement of my fingers, the satisfying stream of words appearing on a screen. It’s beautiful and I want to experience it forever. And now I can for quite a while, hopefully. I will be doing my best to not break this one. Especially because it’s so small and cute. I feel like it’s a bunny computer. Maybe I will name it Small Fry in honor of my once-pet Small Fry, the dwarf rabbit I had once that I thought was male and ended up being female (her partner was Paige, thought to be female but was actually male–funny story, I asked both my divorced parents separately for a bunny for one holiday and they both obliged and were both told the wrong sex of the bunny. I had a lot of bunny babies after that).

Anyway! Life is pretty good. For the most part. I have to be honest, one thing is really weighing on me, but I want to talk about the good/mixed stuff first.

  1. Mixed: Edwin’s progress report from his mixed assisted ed preschool came in, and I had a long convo with his speech therapist (he’s autistic, like me, for those who don’t know–severe language delays, moderate fine motor delays, mild gross motor delays, processing issues, sensory issues, especially with food, etc.). He’s made a TON of improvement since last year, but he still has a long way to go to be “caught up” (aka matching his neurotypical peers, which I don’t think he necessarily needs to do–as long as he learns at some point, I don’t care how long it takes him, and even if he never learns some things, that’s okay, we will work with it). We think a lot of his issues is not processing incoming information, so his receptive speech is weird. Which of course throws off his expressive speech because he doesn’t know what he’s responding to, he just says whatever when you ask him a question. Example: He was asked “How was your Thanksgiving?” He replied, “Christmas.” Which is cute but not an appropriate response. So we’re trying to find where he’s not processing novel questions and see if we can help him understand. It’s a lot of work but I don’t mind, he’s my baby and I will do anything for him.
  2. Good: Keith is great. I know we’ve had a LOT of issues (and I will write about those at some point, proably soon). But we’ve worked through them, we STILL work through them, and he’s been amazing lately. Less rage, fewer downswings, longer time between downswings, and less severe downswings. He’s been very supportive, very understanding, very compassionate, very generous. Very sweet and attentive. I mean, he has limited time and energy, and he’s STILL taking care of me and helping me around the house. He only sleeps 4-6 hours a day, works the night shift, then does housework with me, maybe takes a nap and a shower, goes to class three days a week, does tons of homework and projects (he’s an engineering tech student, he’s doing really complicated math and he’s had to solve problems for actual companies and they might be implementing his group’s idea for efficiency and waste saving, it’s so cool), spends time with me and the kid, and he works over 40 hours a week, and then he sleeps just a little bit. Weekends are the best time, because he usually doesn’t have that much overtime and he can get a full night’s sleep next to me (I miss sleeping next to him at night, I LIVE for Saturday nights when I finally can). He works so hard, and he still finds time for us and supports us and has an active role in his son’s life and that’s amazing.
  3. Good: I have pain medication! For now, while I can afford it. I can only take it when the kid isn’t around or when I’m home from work, because it lessens my ability to function, but I have pain free time every day now and I feel incredibly about it. It doesn’t stop me being tired from all the pain I do have, and I’m still pushing myself too far, but my flare ups are fewer and farther between. I haven’t had any severe back  or leg spasms since I started them about three weeks ago. I’m also using fewer of my muscle relaxers, which don’t just make me a little woozy, they send me right to sleep so I can’t take them during the day unless I have time to nap.


Work. I love love love my job, I really do. It’s a small business, locally owned and operated, one store with a bakery, deli, and coffee bar, plus a little bit of a convenience store as well (we have like dairy products and eggs and snacks and condiments and butter and a truly impressive amount of sodas/energy drinks/teas/etc.). The sisters running it are incredible, they’re just so cultured and beautiful and poised and committed to the store and to the community and they’re just so wonderful, seriously. My job is good, there are amazing people working at this place, and it’s work I like doing. And it pays really, really well for food service/retail mixture that it is. Way above minimum wage, with regular raises if you’re a good worker (I am, I already got one raise after three months there, and not a small raise either). They’re generous and understanding and are working with me on my disability. And that’s what’s bad.

See, they’re having attendance issues. Girls calling off left and right. Doing it multiple times a week. No medical excuses, no shift coverage, people refusing to come in to cover a shift, but insisting others take their shifts anyway. I am part of this, but the difference is I have legit medical reasons and I get doctor’s notes to corroborate, because I know how unexcused absences can add up and tarnish your reputation. But alas, I have been sick a lot, and my son has been sick a lot. Often one leads to another so I’m out multiple times for each of us. And a lot of it is because the stress of my Ehlers-Danlos Syndrome is fucking with my immune system. I just get under the weather more often than non-disabled people. Today, after seeing a new policy on absenteeism posted on the board by the schedule, I got sick and threw up–because I had my flu shot yesterday and I get sick from those sometimes. So I had to go home. But I talked to the office first, with the help of the floor manager whom I’ll call L, and talked about how I don’t want to be  burden to the company and I feel like I’m an unreliable worker and I’m sorry for that, but my body isn’t cooperating, and I want to do better, but I’m under a lot of physical stress. They researched my disability on the spot, and are going to be reading up on it some more, and I think that’s lovely that they’re going to that effort to talk about it. I said I want to try lessening my hours, maybe, making myself take shorter shifts and spread out further, instead of my usual consecutive 6-7 hour days. However, if they decided I wasn’t right for the job because I can’t do the work, they can let me go for medical reasons without drama, I won’t fight them or sue them or something. They said they’d talk it over amongst themselves, and get back to me.

So I’m like…well, either way, my job is going to change. Either fewer hours, or I lose it completely. I really don’t want to lose it, but if that’s what I need for my health, then that’s what I have to do. I am going to be pursuing disability once I get all my medical records together. I just have to request the records from my pain doctor and my psychiatrist, both of whom I see this month. Then…a lawyer my therapist recommended out in the next city over. If he wins it for me, I pay him out of my monthly disability payments. If he doesn’t win it for me, I don’t pay a dime. It’ll probably take a year or so to get this all through, but…we’ll see how it goes.

So. There you have it. A long-ass post glimpsing into my life right now. Seriously, how long is this damn post? And it’s only a fraction of what’s going on lately. Man. I have a lot of life.


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