csolarstormhealthjournal

[csolarstormhealthjournal]

"came back wrong" what about Came Back Afraid. You used to be brave. Too brave maybe, defying the odds at every turn, a fighter, cocky, playing with fire, first to throw yourself at the enemy. Until one day it all caught up to you. You came back, somehow, but now you know all too intimately how it feels to lose, to die, to be destroyed. Now you flinch and freeze and cower at the slightest provocation. Who even are you now if you can't be brave? The grave may have let you go, but the mortal fear still grips you tighter than ever.

[csolarstormhealthjournal]

[csolarstormhealthjournal]

Getting good sleep has become a serious thing for me. Every time I stay up past...let's say 3:00, because nothing good happens past three am (insert musical note here) there's a %30 chance I will have terrible, constant knee and hip pain the next day.

Like, I know sleep is important for pain management, but it's weird just how important it is for this specific pain issue. It's like a switch. I'll get one episode of hip pain on a good day, and then if I don't sleep, there's a 1 in 3 chance that the next day I'll get like fifty pain episodes, and I'll be lying down all day with all the medications.

And I don't really get knee pain except for when this happens. The doctor says it's early arthritis because that knee was messed up as part of my condition. But when the hip pain goes off, I tense up and that activates the knee pain, so the hip and the knee are like playing ping pong with each other.

I don't understand why it's so particular, like on an average day things are normal, if the dice rolls and this is the day not sleeping well gives me this pain, now everything sucks. My understanding is that not sleeping well makes things worse, but doesn't literally wreck you, unless you've been sleepless for a while.

But my problem with sleeping is psychological, and I need to bring it up with my new therapist. For one...I just don't want the day to end. I want the free time where I'm all alone, and my a few of my brain cells are shutting down for the night so I can do what I want a little more carelessly.

But two, I'm uncomfortable with just...not being, and laying down and closing my eyes just makes me anxious. I get that forgetting how to breath nonsense which is anxiety and probably a little OCD quirk. But on the other hand I honestly do choke in my sleep so the forgetting how to breathe thing might not be random at all.

And because of that anxiety, falling asleep just can't be automatic. It's like I'm watching the whole process. Sometimes my brain invents this fake sensation of going to sleep, and it feels like it's smothering me. Or I'll have straight out OCD invasive thoughts that make me open my eyes again. It's just not comfortable to close my eyes and they there in my mind, because my mind is weird.

This problem has gotten better since I started taking melatonin gummies pretty much every night. For a little while I was missing sleep every other day and this "insomnia pain" happened a lot more. Now it's once and a while.

Still too much for me!

[csolarstormhealthjournal]

Had more medical issues than normal in the past week. My leg braces need revising, because they caused sores on both my feet that Diane is helping me treat and bandage. It's weird to go places without my braces; my legs feel so fragile.

Then there was the psychological issue. My therapist raised my dose of Effexor to 1-2 pills per day up from one so I can raise my dose at my own comfort level. I try to raise my dose and then get really weird about it and go back. About a week ago now I tried to take two pills for just one day and then gave up the next day, and then a few days later my emotions went really weird; first I got really irritated and annoyed, and then after that for a few days I just settled on feeling really flat and zoning out. This was weird enough that I just slept most of the day hoping I would feel better when I woke up. And since then I've just been gradually getting out of that funk.

It's weird for any withdrawals to happen after just a day of taking two pills, and the pills are at the littlest amount possible, but who knows. I mean, I've already felt off for months, like I need a higher dose, so it makes sense that messing with the medication levels at all would affect things.

Things started getting weird on the Spring Equinox, in fact. Maybe it's not even about the medication, and I'm just having a really weird case of seasonal affect.

And then today I started botox to my hip pain again. Only thing is, the first day the botox really hurts a lot, so ironically there's a waiting period of a day or three where things hurt a lot before actually getting better, and that's how it feels today.

[csolarstormhealthjournal]

Journal, basically.

Diane's political outlook has really changed ever since she got that e-mail from her union about the Medicaid cuts. The politics are real to her now. Now she's keeping up with political news all the time, posting comments on Facebook, sharing videos with me about the latest thing Musk and Trump have done. It's weird when she shows me videos from the political channels I've watched for years.

We were really enthusiastic about that economic blackout day where nobody bought anything.

As a consequence she's accepted the likelihood that we might have to rethink our lifestyle in the event her job is cut. One slightly less bad thing is that the proposed Medicaid cuts seem to be 10% to 15%, and it wouldn't happen all at once, but over the course of years. Although what gets cut and when is unknown. And California already pays for half of its own Medicaid. And there's the 2026 governor race to think about. So we don't really know what will happen or when. The spending bill isn't even finalized yet.

But.

I had a pretty good weekend. Pushed myself to go to both days of Unova Tour Global, and I was happy to realize today that even though I was exhausted, my hip felt fine. My back hurt the same way every middle aged human being's back hurts, but I was just tired, that it. Usually tired means hurt, but it didn't this time. And then after the three and a half hours of shiny hunting downtown, Dorothy took me to pick up my medications, and then we went shopping for groceries. And by the time we got back it was two hours after I meant to get home and Unova Tour was over, but my hips still felt fine.

Don't get me wrong, I was already physically tired ten minutes into the event (and my eyes - damn the Pokemon were crowded and tiny, and the sun was bright) but I didn't really want to go home before finishing the Unova Tour research, and of course there was more shiny hunting to do. So, Pokemon Go did some good for me as an exercise app.

[csolarstormhealthjournal]

I did Unova Tour downtown. The ticket worked since it's still Los Angeles, and I got tons of shinies. They had this cool feature where every time the hour changed, there were Zorua spawns all around you for two minutes! I think it was two hours in when I found the shiny 😁

[csolarstormhealthjournal]

My body and I had a little fight over Unova Tour tomorrow. I want to go and enjoy something I paid a lot for especially after missing the Beetlejuice musical after getting sick and not getting a refund last year.

But my body very reasonably argued "how can I get up at five in the morning and meet up at eight and spend nine hours in a high energy situation without laying down and only access to food truck food I might not be able to eat aaaaahhhh also I don't even feel good right now so take that"

So I'm meeting myself halfway and leaving around noon tomorrow. If I feel good enough to go.

[csolarstormhealthjournal]

Just got back from my psych appt. It wasn't a fun appt, but I got what I wanted: the doctor raised my prescription to 1-2 Effexor per day, as my digestion can tolerate. This is such a relief. My depression has been an on and off again issue since November. I have seasonal issues, but also the doom didn't help. They seem to hit their peak in early February and we're past that.

I'm not crazy about the therapist on my case right now. I'm not sure if it's more because she's very stiff and seems to doubt a lot of what I say, or because to be honest she asks better questions than my past psychs and that makes appts taxing. She's very thorough, but not very welcoming, so kind of a mixed bag. She recommended me the melatonin gummies, and they helped a lot. I'd eat a lot of things in the form of gummies.

Also I can't get another therapist because they haven't assigned me to anyone and the nurse case manager is handling my case. Budget cuts and all.

Nonetheless, her skepticism did help me be a little bit more forthcoming about my experiences, and that's how it should be. But when I see people in person I'm just used to putting on a polite and happy front. If you think about it, acting happy and healthy is an unspoken expectation in being polite, right? At least in our puritan-based culture. And especially if you don't like to disappoint people, it's hard not to put on that front, even when you're literally there to see a doctor about your health and happiness.

[csolarstormhealthjournal]

Okay, so the Medicaid cuts stressed me out so much that it made me feel sick. Or that could be a coincidence. In any case, I'm starting to gain some perspective on this whole scenario of living without benefits.

To be clear, Medicaid is just the beginning if it happens and things continue the way they are. SNAP cuts/the end of SNAP is also in the bill, and Musk is suggesting that Social Security is full of fraud. So in the longterm what I'm really afraid of is losing all of our income. Diane's job comes out of Medicaid, but Dorothy and I contribute Social Security money.

That said, my family without benefits would be hard -- we'd probably sell our house -- but we might still make it work. Diane always talks about actually becoming a nurse. I can picture her training for that while working at Walmart or Del Taco or something.

In the past we talked about all of us getting jobs, but it could be a while before I get work because I'm such a wreck. That's why SSI is a good fit for me. But without it, I can imagine Diane would support me for some time, maybe while I take a few tutoring jobs here and there, until either I find an online gig, or she has a suggestion for me that works out. Ticket taker at AMC? Walmart greeter? A lifetime of living off government checks has made me really self-conscious about being a mooch, so I would try my best, but I have a really bad constitution.

And in the long run...by myself, I'm not going to be able to work the multiple jobs it takes for someone to live in California. If we're not tethered to California's IHSS, we could move to a cheaper state. But ultimately? I've always known I am a product of the state, a kind of government project that doesn't exist without the motivation to fund me.

I was reading the disability Reddit, and one of the recommendations for someone to support themselves was to get into a relationship so someone can take care of you. That's one of the reasons I haven't tried to get into a relationship. I have a pretty hard time imagining roping someone into THIS after seeing the kind of stress my closest friends went through when directly exposed to my medical life.

Nonetheless, if I can't make the kind of money I need to support myself in an SSI-less future, what would I do without my parents? At least they chose to bring me about. And they knew I was going to be handicapped and decided to go through with the whole thing. Not that I want to mooch off them either! All this time I've been mooching off the government, not my parents. And if Diane ends up working to support us for the first time the mooching will feel more personal, more direct and kind of embarassing.

I suppose what I'd do is go back to the Department of Rehabilitation - if that still exists - okay never mind - we'd try to save up to send me on back to grad school, but likely at CalState or somewhere besides CalPoly, or just go for my teaching credential and attempt to teach in grade school.

I told my counselor the other day that what really counts is that even if we lose all of the benefits and the house what counts is that life goes on. Hopefully.

I mean without Medicaid, my pain meds and antidepressant are dependant on our paycheck. Diane promised to keep buying them for me, and ideally I would if I could start affording them.

It especially makes me feel kinda sick to think of losing my doctors because they keep me alive, and I've gone through a traumatic experience where I tried to go to a local hospital for an infection, and almost died there. I need these specialists, and I can't just substitute any doctor in that field, even if they're really good, they might not have that specialty knowledge that I need.

Wait. I mean if there is no Medicaid - well hopefully California will at least offer something. At least while Social Security is around, they could still offer some watered down insurance to SSI recipients.

I don't know how getting health insurance outside of a job works, but if there are no state programs at all, that's what we'd have to do. Diane gets health insurance through IHSS, and Dorothy gets Medicaid.

And that's my perspective. It's not immediate doom but my disability and health will make things a lot harder - but I'd also have my family's help.

[csolarstormhealthjournal]

So, it's happening: the Republican spending bill wants to cut $1.5 trillion, with part of it being Medicaid and SNAP. They insist they are not cutting it entirely, but the text of the bill suggests they're cutting most of it.

And then Musk is now identifying Social Security and Medicare as full of fraud, which is the codeword for cuts.

I'm pretty scared. My family is too, but they're having trouble really confronting what's happening.

I don't know what to do - it's all our income and my insurance. How do you respond to that?

My response has been "we need to prepare", but there's also a decent argument that there's nothing we can do except wait. Even if I got an online job with just a BA in English, I'd have to wait until Social Security definitely ends, or surrender it prematurely. Which sounds like it might be a good strategic move if such a job exists. And in the meantime if California says that my Medicaid was all federal and cuts it off, my pain meds and antidepressant will cost a ton and it'll be dehabilitating to get off of them, and live without them.

I didn't want to post this, but it's the truth.

[csolarstormhealthjournal]

Tomorrow I have a psych appt, and I'm going to ask for them to raise my antidepressant dose. Since my digestion has gotten better, I think I can handle the higher dose now.

My depression has been bad since about November. It feels like a little black hole in my chest, sucking in my energy and making anything intolerable. Fighting it isn't about keeping my mind occupied so much as feeling strong feelings. Ironically the day Medicaid was under threat was a good day for me, because fear and anger are feelings. They aren't numb, nearly physically painful...anti-feelings.

The coup isn't helping my mood overall. It's depressing to see how apathetic the media and Congress are to Musk seizing the treasury. It's so beyond illegal it's an attack on the country. And of course Trump has no jurisdiction to authorize it. Moving to my selfish concerns again, it's only a matter of time until CEO of America Elon Musk uses his illegal position to slash Medicaid like they tried a week ago. If nobody stopped him from taking the department and the data, nobody will stop him from deciding rules tomorrow. If they decide Trump doesn't need his followers anymore, he could go after Social Security and Medicare too.

It's getting weird to hear my parents telling me about this is that that Trump did. Weird when the government is basically taken. Of course they got rid of MLK day celebrations. It's like coming to me with news that an old restaurant in Alta Dena burned down. Yeah, all of Alta Dena is burned down.

It just contributes to my feelings of alienation.

[csolarstormhealthjournal]

So Diane is being a bit nicer today. We're going to have a family night where we play some Jenga and order in, to "get us out of our heads". I'm getting there.

Only problem is I didn't get much sleep last night. It's hard to when I'm trying to distract myself from the news. I mean Dr. Oz was just picked as head of Medicare and Medicaid. What the fuck does that mean? Did they pick a salesman because they want to pawn off the program?

I'm very much trying to ignore all of it right now, but the election stuff is bearing down on me worse than I thought - when I ignore it, it feels like a slow moving disaster unfolding just behind me. I don't know if they can cut Medicaid or Social Security. Nobody will tell me. So I just try to rely on the idea that there are guard rails that will make it at least difficult.

I think I'd rather discuss all this and my emotions in a big family meeting than have a family night where we try to ignore it. But I just talked to Diane about it yesterday and we got our wires crossed really badly, so I dunno.

On the other hand, the analysis of N's cube is coming along awesomely, so there's that, and I now have the opening banner for the theory which I will brag about anywhere:

[csolarstormhealthjournal]

We're not handling the election constructively here. Dorothy has been sulking in her shed, and Diane has been just kinda barking at us to stop letting it bother us. We're poor now and we'll be poor tomorrow, Trump has all these regulations in his way, etc etc.

I really wish Diane would just have some compassion. Maybe she does know something we don't and Trump won't be any worse than he was in 2016. But I don't think that makes it irrational to worry about him doing what he says he wants to do.

Dorothy is worried because apparently Project 2025 talked about taking away voting and property rights from women. I think it's rational to be worried about that, especially in this climate where current events are so volatile! I'm guessing that this is a more long term priority for Christian nationalist Republicans since the 19th amendment is still a thing and there's a fair number of women in Trump's cabinet and on the Supreme Court - but I don't think that erases her grief over the possibility of it.

Diane says she's sick of everyone talking doom and gloom around her, and my reaction is just...that's tough? There's a good reason for them to. It's one thing to tell them to stop moaning and take action, but Diane just wants them to stop, period. And as much as she says she's not stressed about Republicans cutting Social Security or coming for her job or my insurance, it kind of seems like she just doesn't want to be reminded about what could happen.

And then when we finished talking, she said she's going to stop following politics. Okay. I was going to do research on whether Trump can actually slash Social Security or my Medicaid, but it seems like she doesn't want to hear it. So now I'm all flustered and I feel like I can't communicate effectively, and my parents are both isolating themselves in some way or another.

It seems most news outlets are more concerned about Social Security running out of money by 2031 than Trump cutting Social Security payments. But I also can't find information on whether Trump can cut Social Security payments, though I'm guessing there is procedure to do it because Social Security cuts have been in the news before, for Trump and Biden. And if anyone would cut Social Security, it would be a Republican president who has the kind of power Trump does, and who isn't worried about getting re-elected.

My mom's job probably depends on the governor staying Democratic after 2026 - so we probably have two years.

[csolarstormhealthjournal]

I talk a lot about my OCD, but something I haven't written about in a minute is my PTSD. I have some kind of dissociative issue. It seems to be depersonalization. These episodes happen after a specific trigger related to my OCD. And it's related to my threatened feelings of agency and self control, but of course I can't literally describe the trigger without...triggering myself, obviously.

These episodes last for a few days or more, and they fade as they go on. I'll get brain fog, and this feeling like cotton or syrup clogging up my mind, like shifting around. And I'll be really emotionally sensitive and quick to irritate, really self-depreciating and down on myself. It kind of feels like being trapped inside myself, like I'm behind a glass barrier.

I'm talking about this right now because I'm in the middle of coming down from one of these episodes. It was stupid because I was researching something I knew would probably trigger me, but I did, and I paid several days for it. At least Effexor dramatically makes these episodes less common for me, and makes it much easier to talk to people and show emotion while I'm going through them.

I remember I was going through one of these episodes when the cover for Harry Potter and the Deathly Hallows was revealed, and it sucked because I couldn't feel anything. It was like my hype was there inside the cage with me, but it couldn't get past the glass. And what is the fandom news cycle without hype? Just sad, that's what.

It's hard to do research on this stuff because it feels like the typical conception of PTSD is that you get triggered by reminders of your traumatic experience. But my trigger is more abstract and fantastical in nature, like the escapism is baked into it. Like, I know surgical wards are a whole different, more predictable kind of trigger for me, but my reaction to that is actually really mild compared to how I react to a trigger that's fictional/metaphorical in nature. It's ironic!

I've been having these episodes since the middle of my first year in college, which was a really bad time for me. But more generally, I've been having a lighter version since my gender change, and even really my whole life. My parents tell me that when I was really little, they'd take me to the doctor and I'd go mute as if I was a doll, to the point that the doctors didn't believe them when they insisted I could talk. XD So it really seems that actual doctor's offices used to trigger disassociation back then.

The only "cure" to ease down from the episodes seems to be...fun. Like, just doing fun things that re-exercise my reflexes for things I'm passionate about, to gradually defrost me. Music, visiting with people (however painful that can be when I'm feeling like this) watching something funny, etc. So that's what I'm trying to do.

[csolarstormhealthjournal]

Also, while taking hormone treatment as an adult did lead to "mood swings", I had no idea what the term was until Effexor withdrawal. These are mood swings.

(The hormone treatment still caused bona fide mental instability, not just because being a teenager is like that but because that's what taking an artificial shortcut to rewiring my brain at 18 years old was like in general. And not considering the hereditary depression that pops up with maturity, and also doing all this while I get into traumatic situations and college.)

[csolarstormhealthjournal]

Got myself into a dumb situation. I should know that it's a bad idea to just quit a medication cold turkey. But when the prescription for my antidepressant lapsed because of a mixup, my first instinct was to see how long I could go without it, because I've had a suspicion for a long time that the management strategies I learned from talk therapy do the heavy lifting. And that's what I'm experiencing. So far my OCD hasn't changed since I stopped taking the med a week ago. I'm just really sensitive and irritable. And the next day a little bit more, and the next day a little bit more...

AND HOLY CARP AS OF TWO DAYS AGO THE WITHDRAWALS ARE TERRIBLE. Everything that hurts hurts worse. Everything that itches itches worse. I am sweating worse in the heat and shivering in front of the fan. My hip spasms are combining with the shaking to create some kind of malicious awfulness.

It sounds weird because it is, but I realized I need to go ahead and get the medication again when I was watering my fuschias, and I did the little flourish I usually do at the end where I a little water on the plant, but when I did I felt angry, like I was slapping it with the water. And then I felt teary eyed because my fuschias don't need that negativity! They're just a plant and they're trying their best 😭

I've never felt mood swings like this. The Morphine came somewhat close. It really feels like that mood chip episode of Kim Possible.

Effexor has done a lot for me, like basically shutting down my depression when it was eating my neurons and making it much easier to socialize. And also making the OCD thoughts easier to manage! And I know any psychoactive medication is like this to some degree so I'm not going to join the crowd saying Effexor is evil or whatever. BUT IT'S NOT MAKING A GOOD CASE FOR ITSELF -

Whatever I decide about Effexor in the future, it's clear I should've known I can't just stop it suddenly like this. I was just distracted by my doubts about the Effexor and I guess that normal antidepressant insecurity about wondering if you really need it or not, and if you're not "yourself" enough.

But I can explore that in a safer way if I habe the medication to taper down. And I will taper it down to the very last orb if I have to if it makes the withdrawals better - ! I have too many health problems already to just willingly bring on a sudden condition that feels like the kind of sickness I have to watch out for already.

[csolarstormhealthjournal]

My medical issues are eating away at me. There's no good position to get into to just sit and relax. My pain and other stuff prevent that. And when all conditions are good and I just *decide* to lay down and sleep, my OCD makes me really aware of my breathing. And then I get loud music in my head. But I'm afraid to take Benedryl, because pain is worse at night, and half-sleeping because of pain is hellish. There's just very little to room to sit and savor things. I can't eat the things I want to. And the games I supposedly enjoy playing, the shows I like watching...they get old. I don't find myself as hyped by anime. The same games start to feel like a creepy loop. I don't know how much serotonin I can get from games and shows. I want to leave, go out, try new things. And I am doing that with the Pokemon Go group - at least within the confines of the same town I already walk through - but when I come back from days with the group my medical issues just get worse. It's hard on my body. Doing things I *actually* like is hard on my body. But I do them, because what else can I do? If I don't, this void inside me eats away at me.

And I don't think I can tell my parents this, or at least it won't do much, because they don't know what to do about it. They're burnt out too. It makes for a real unmotivating environment around here. The cats and board games are really what keeps the dopamine flowing around here.

I'm two weeks late on my testosterone because the doctor's prescription isn't reaching the pharmacy. She's sent it in twice, according to the online portal. This happens every time now. I didn't even have the energy to call her today. What would I do differently this time if I did call her? I was completely out of it this morning. I started serving myself up pills without realizing it. I started to call the doctor and looked under "E" for Endocrinology. That's not how it works. And it took me a minute that too.

In fact there are two prescriptions now that just aren't reaching my pharmacy for no reason I can understand. The other one has been stalled like this for a month. Insurance is good, they just don't like being in different counties. But that's how it has to go for me. I don't know what to do about this other than to go to the hospital.

I don't want to get to a point where this is all just my medical problems hurting me all the time while I distract myself with shallow stuff like media and popsicles. Except I think that's where I am. ADHD makes it hard to finish at-home projects that feel more fufilling. I start them, I get close to the finish, but then when it gets frustrating...ain't no more dopamine coming from this task. And it's not like doing sedentary projects at home is what I want in life anyway. But like, too bad.

Not a lot of dopamine coming from a lot of places.

At least I confirmed that my cousin in law/friend...soon to be ex-husband in law/friend...was not hitting my cousin. My friend was not a domestic abuser! Hooray!