#they wanted me to talk to my pcp about it which is fine but by the time the weekend is over it will be 5 days of symptoms so i don't think

[abyssalpriest]

From the Abyssal Heart: Bodies, 17/7/24

Channellings of points on the star, presuming the title Bodies can be put on this. Speaking of, all titles here are presumed, all details felt out and channelled, not specifically consciously translated into official forms

----

(Hidden) Secret:

The unspoken, the core mystery.

The unknown driving, the scent of blood, the unspoken, intangible. The future tense of time.

Provides motivation, the expulsion of Time from and to the Black Hole, the driving force of recognition of Self and Other

Ideally knowingly placed above and below, both stood on and looked towards, both ignored and sought. Intelligent and purposeful seeking of the (Hidden) Secret requires understanding it as both grasped and never touched, and having it both ruling and inconsequentially overruled and ignored in life.

Community:

The collective soul, worship, support, communal thoughts and both giving and taking

The cohesion of the community, the communal bodies, the Leviathan as a collective of bodies

This goes beyond mere feelings, and is not found just in literal senses, instead being a tangible-intangible medium between

The collective, the external environment-body to be experienced and changed and lived in

Ideally supported, nourished, but sustained as both separate and unified. It is a creature of many different flavours of all things, including good and bad, and it will never be cohesive in conscious mind agreements. Ideally it should be understood like a body is - in that its vascular system and organs and such should be understood as things to be nurtured and that need nourishment, understanding the various ebbs and flows it experiences both beyond and containing conscious divisions.

Sacrifice:

Ritual, burden, portioning off that which is or could be had to be given to something else

What is done to sustain the community, to keep the collective body fed, as well as nourishing multiple parts of the self, environment, and community at once

Not necessarily about giving from the singular to feed the community, but what is done and given to perpetuate the community - including the individual. Includes sacrificing conscious peace of mind to accept what is needed.

This is the act of giving and letting go, as well as building, working, putting things from "unclassified" and "unused" into the category of "materials" and "used", as well as the harnessing of the things in use

Plays a key role in identities and roleplay, the sustaining of the community and the amplification of uses of resources through giving and taking in identity-based exchanges

Ideally consciously taken part in, as all these heading are. There is a time to give and a time to take, and those are paradoxically always. Feeding the community should feed the self, the self can be fed alongside the community, there are calls we all feel towards sustaining something(s) and those should be consciously interacted with and approached with openness. Sacrifice is the fire that keeps the village warm, and that nourishes the earth with ash.

(Revealed) Secrets:

Divine mystery/revelation, knowing innately

The knowledge that is lived, embodied, known by the self through both mind and matter - or transcending just conscious mind. The present and past sense of time.

Ideally sustained for power. This is a religion where canines forever circle around and with us, the nose is a sacred object just as the paws are, and they know the dirt better than our conscious minds. All types of knowing are knowing, and while the conscious mind is a tool and an innate part of the self not to be ignored, all minds, all knowledge, is valuable. Memory - including muscle memory - boundaries between self and past lives, self and other-than-human instincts, self and unconscious self, none of these barriers need to be barriers and can instead be individual eyes to see the world, and ideally the self should allow itself to encompass all parts of the self that enable and improve navigation through the world.

Self:

Identity, core self expression, the clothed body, the solar system around and including the sun

Not the True Self outside of and detached from Reality, but the living self. The individualised body, including tight-knit groups, it's the individual words in the dictionary as their own things with lives outside and inside the language.

The embodied self, the Mind and Matter dancing together, Ardhanarishvara, the self as a single thing even amongst multiplicity.

Ideally kept dancing, expressing, balanced with meditative being. There is no dichotomy between the soul and the body if one understands all as information, and there is no more real god between Consciousness and Matter. Both exist to know and be known, even if one seeks Consciousness above all else, existence in a body doesn't have to be perceived as a trap, instead ideally one should seek expression: Be Consciousness, express Matter, become Real.

Transformation:

Movement, surrender, metamorphosis

The surrender of states and selfhood and so on. If Sacrifice is using the ritual, this would be the ritual itself, the means, the candle that is burned in a spell.

The self in movement surrendered to the ritual, surrendered to change, but also wielding that change.

Ideally stepped into with bravery, understanding the time to ebb and flow conscious to subconscious to unconscious to un-self and back again. Understanding traversal, understanding the maps of existence, and using them to travel into the unknown, and in lieu of them using signs from both the environment and the True Self to navigate, is the ideal form of transformation

[californiaquail]

they won't prescribe me paxlovid because of my antidepressants 😀🔫

ok i'm trying a teledoc appointment to get antivirals. don't know why i didn't just do that in the first place

[copperbadge]

Hi Sam! When you decided to go for an adhd diagnosis, is there a reason you went to the type of place you chose? I know you ended up having a difficult time with them after your evaluation. Did you go to your pcp first or try any other routes?

I’m starting to feel very heavily impacted by what I’m fairly certain is undiagnosed adhd, and I really want to try medication to see if it helps, but as I’m sure you’re aware, the process of making appointments is very difficult for one with undiagnosed adhd. Sigh. I’m wondering if it’s worth it to try and just make an appointment with my regular doctor to see if that gets me anywhere. But I know that doctors tend to be very cautious when prescribing, and I don’t want to bother with completely pointless appointments.

I just feel so overwhelmed when I think about trying anything else.

Yeah, I started working on getting evaluated in 2019 and only managed it in 2022, so I'm familiar with The Delay :D It never occurred to me to go through my primary care doctor -- I haven't had one for most of my adult life, because my insurance doesn't require it in order to see my specialist, and I just use a clinic if I'm sick. If you have a PCP you trust that's probably your best bet. You don't need to talk to them about prescribing, even, just talk about "I wonder if you have a recommendation for where I might get evaluated." You might even be able to get a recommendation without making a formal appointment. But if you get pushback on getting evaluated, then you can venture out on your own (more on this below).

I had a recommendation for a testing site, and I called a handful of times in 2019, but they never called back -- the desk person would say "Leave a message for our scheduler" and I'd say "Is there any way I can talk to a person? I keep leaving messages that don't get returned" and they'd say "Oh, they'll definitely return it this time" and that never happened. So by about mid-2019 I gave up and said I'd deal with it later. I started to research it in 2020, but then there was a global pandemic and I didn't want to be spending hours on end in a small room in a medical center.

And honestly, whenever I spoke about it to someone who wasn't a peer -- a parent, a doctor, etc -- I'd get a skeptical look and the response, "But you're so put-together and you're successful. Why would you think you have ADHD?" And I internalized that a little, to the point where I thought, yeah, I'm coping fine, it's not like anything would change other than maybe medication, why bother? Which...

That worked until it didn't, sometime in late 2021.

It worked until I looked at my life, which was not falling apart, and could see it fraying, and that if it did fall apart, it would be catastrophic. So my resolution for 2022 was to get evaluated. If it was ADHD, to get medicated; if it wasn't ADHD, to get help because clearly my life was not going as well as it looked.

So I just...sat down with an empty spreadsheet and I started googling "adult adhd evaluation chicago" (If you're not in a major city, I'd google your state or major cities nearby instead). Every site I found, I recorded the URL, my thoughts on the site, and their process for making an appointment. Once I had a list of places, I started "cold-calling" -- mostly via email, just reaching out to each place and recording the date and how I contacted them. When they answered, I recorded the date they replied and whether I responded.

The place I ended up going wasn't the first to call me back but they WERE the most responsive, and the first to schedule me for the evaluation (I did save the spreadsheet in case that fell through). They did a good job, more or less; I had struggles with them, but those were more to do with the fact that the woman who evaluated me already had one foot out the door and left my eval unwritten, meaning someone else had to take up the slack, which took time. And it at least helped to be able to say to my prescribing psych, during our first meeting, "Look, I have a diagnosis but I'm struggling to get the paperwork from them, and I'm really hanging on by a fingernail here." He gave me a much-abbreviated evaluation (basically a 20-minute questionnaire) and was able to prescribe for me that day.

So your other option is to just...find a psychiatrist who specializes in adult ADHD and/or ADHD medication management, make an appointment, and say, "I don't think I have it in me to set up a longform evaluation for this. I'm wondering if you can help me get evaluated and get some help." One of my goals was to get medicated but your overall goal is not medication -- the goal is help, and that just often happens to be medication. This isn't like, a trick to get a prescription or to manage a suspicious doctor (those have their place, believe me I know) -- your goal in getting treatment should always be to improve your life. But it's okay to want medication, you just have to want it in terms of improving quality of life, not medication qua medication.

So on the one hand, you sound like you need help, and you should work towards getting it -- but on the other, bear in mind that this sometimes just takes the time it takes, and keep your eyes on the goal. If you can be doing something, do it, and if you can't, then don't feel guilty that you can't.

Good luck :)

[lastoneout]

I s2g these like...third party? clinics that doctors send you to for MRIs and x-rays and stuff like that are run by absolute clowns.

I get an order to go an ultrasound of a weird spot on my skin that's probably just torn soft tissue just to make sure nothing's going wrong and I call them and they schedule me for the 6th of June, but tell me that the order I got from the urgent care place needs to be from the clinic supervisor, not the NP who saw me, so I need to go get that fixed, and also to tell them that the NP isn't in their system so they need to fax them documents to update her info. Okay, I'm not an employee there so idk how that last bit is my problem, but whatever.

In between this call and me having time to go to the urgent care clinic I get a call telling me actually they don't have anyone who can do the ultrasound on the 6th so I need to come in on the 30th. Great, whatever. This has happened before, sometimes DAY OF with these types of places so while it's annoying, I'll live.

There's less time before my appointment now so same day I go down to the urgent care place and explain all that and the desk lady seems to have no clue what the hell I'm talking about and just gives me a copy of the order and says if the ultrasound place needs updated stuff they have to request it, which is the opposite of what I was told but whatever!

So I call the ultrasound place and explain and the guy is like "uh no you should be fine with the order" and then to be sure he checks the info and is like "oh this doctor's info is out of date" and then he has me stay on the line and give him the urgent care clinic's phone number and address and again! I am not an employee there!! Why is this my job!! But whatever, he says I'm good, so I'm good.

Today, the 29th, I get another call from the ultrasound place informing me that actually, they don't even perform this procedure in Tucson AT ALL and if I want to get it done I either have to GO TO PHOENIX or get my order sent to a different clinic that does these. I do not understand why this information was not given to me immediately the first time I called, and now I have to go down to the urgent care clinic AGAIN and beg them to update the order, and idk if they'll even be able to do that bcs this is an urgent care clinic not my PCP, but whatever guess I get to go beg! And continue to worry about the soft-tissue tear bcs it isn't going away on it's own and idk if there's something legit wrong with me or not.

I fucking HATE these little third party clinics so much they are always canceling the day before or telling me actually I need to go to another location bcs they can't do it at this one or claiming they called me to tell me the date got moved when I didn't get a phone call AT ALL. Why are they so poorly managed. Why does no one know who works at what location or what location does what procedure. Y'all are doing serious diagnostic tests to confirm if people have like cancer or some shit, I've had procedures done at them twice to make sure I don't have cancer, but they still play SO fast and loose with people's time and yank us around.

I genuinely miss the days when they would just send you to the hospital to have this stuff done, they aren't great but at least when they say they can do something they can actually do it. Jesus christ. I'm so tired.

[librarycards]

hey there cav. this is sort of a fraught question but. how do I engage with psychiatry when I'm antipsych? I need treatment but I have so much distrust and I feel like it's all bullshit. I don't really have a support system and there's few peer support resources in my area. I can't do this myself but I cant trust this system. soooo... tips for finding therapists that don't suck & getting the most of it? really appreciate your blog and posts, thanks

thank you for entrusting this message to me, I appreciate it! I have answered questions like this a few times before (they're buried somewhere, if you can't find them in my "ask" tag, lmk and i'll try to dig them up!). it's definitely fraught inasmuch as we're never (as people who hate psych but need specific, urgent support that communities aren't by default set up to provide) going to get an answer that we 100% want, but also very not-fraught inasmuch as most of us agree that surviving in this sea of partiality is something we can do together, with love and nonjudgement.

so, for context: i was in therapy - first behaviorist OT as a toddler and elementary school child, and, beginning at 7, talk therapy - nonconsensually basically from the time I could remember until adulthood. i likely would never have tried it again, except for the small hiccup of needing letters for Transing Genders. so, this was when i first sought out "trans affirming care," as it were, and i didn't expect much. i went to my college's health center and got a list of possible providers, and ended up getting an excellent PCP, as well as a therapist who was a genuine cis accomplice: she wrote letters for Mad/psych disabled clients whose genders wouldn't typically qualify us for surgery/hormones in the eyes of the M/PsyIC. i did not share with her the things i "ought" to have shared, but she knew I had survived abusive therapy / forced institutionalization, and accepted that, and accepted my cynicism along with it. i was also first genuinely understanding foucault at this time, so rest assured i was quite a little shit (affectionate).

when she left to practice elsewhere, i went to a therapist at the same practice she recommended. she was fine, but not what i needed. by this time, I'd gotten the requisite procedures, so my therapy attendance wasn't required. i basically just ghosted this new therapist around the time covid hit.

when i came to grad school, i initially wasn't looking for therapy, though i had idly considered something for OCD, which I was (and am) managing in part through medication. after getting outright rejected for, essentially, being too crazy for normie OCD therapy, i directed my search specifically for Mad/abolitionist providers. i began by going through some of the archives of places like the National Queer and Trans Therapists of Color Network, and some people who have posted guest articles on Mad in America / The Fireweed Collective -- many are providers seeking to disrupt/abolish the system. That provided some leads, though no openings (there are very few of them, and they are, understandably, in high demand).

I then turned to my community connections: over the years, I've amassed a large number of Mad colleagues in various fields. Many are a half-step from radical/antipsych circles, so I asked them. This time, I asked specifically about a possible therapist who was interested in critiques of "eating disorders" as a category, who had an abolitionist, harm-reductionist, and anti-"health" approach to care, and who, accordingly, refused to cooperate with institutions of psychiatric confinement. I was directed to a list of people, of whom my current and beloved therapist / colleague / comrade was the first to respond.

my trajectory with her has been a steady building of trust through a shared ebbing and flowing of closeness, frustration, enlightenment, and curiosity. it has been close to a year and a half now, and we only began speaking frankly about more "dangerous"/"risky" topics a few months ago. early in our relationship, i did a great deal of boundary-testing, and reacted with anger and shutdown the first time she asked a question that proved risky/activating for me. my biggest recommendation when engaging with ANY provider is to ask them explicitly, repeatedly, and critically about their relationships with your own risk/harm level, their ongoing history wrt patient institutionalization / "referrals" to "higher levels of care". take note about the way they reference past patient situations, as well as their own past experience. take note of how they respond when you choose not to provide the information they seek.

also take note of what info they're willing to provide upfront, including at a consult: what methodologies do they work with, what was their training, how do they feel about said training? what are their politics? ask whoever recommended them to you, too. look at reviews. this is obvious -- what might not be is looking up their work on google scholar. who do they cite? what do they advocate, who do they associate themself with?

i think that it's also a good idea to ask them explicitly about their experience in other/"higher" levels of care - most therapists have done some kind of rotation during their education, often in a hospital, group home, halfway house, similar. if you have ever been institutionalized, you may have even spotted / been abused by some! observe how they discuss these experiences. take note.

if and when you've established this person as someone you want to continue working with, trust notwithstanding, think personally about what you are actually looking for. they will ask you about your goals, surely, but it's a good idea first to think about your own personal goals outside of the verbalized relationship between you two. do you need a confidante, and of what kind? what sort of accountability do you need, and what are you willing to try to figure that out? *what are you paying this person for that you feel others cannot or will not do*? what part of this person's expertise can be of use to you, and for how long?

i think one interesting approach to therapy is to regard the provider as a teacher - they're there to share knowledge with you, and you're free to accept or reject it. they have some kind of training/experience you don't have, and you seek them out because you think it may be of use in your own life, and perhaps even to redistribute that knowledge if and when you gain it. at the same time, you also have knowledge to share with them - not to be extracted, but to be incorporated in their own work and practice. the biggest insight on the practice of good therapy i've gleaned is that, ideally, you're both teaching and learning forever. this is true of all good relationships. there is an exchange of knowledge based on shared trust - values - priorities. once you are in a space where you know that this person shares your general relational orientation (aka, doesn't want to institutionalize, etc. you and people like you) it's possible to begin sharing knowledge in a way that benefits from this imposed structure. the benefit, imo, is that it's okay that you "monopolize" the convo and direct the knowledge-production toward your needs, because that's the service you're paying for!

i guess, to close, i'll return to the classic Mad Pride framing of us as "psych users/consumers." this isn't the perfect term, but i think it's enlightening, as we can and should be able to seek out services that work for us. just like i go to a person who knows wtf they're doing when, say, i need my nails done or my car fixed, so too do i go to an expert interlocutor when i am interested in developing my self-/relational knowledge and/or am seeking support in times of emotional tumult. this doesn't confer them a status as superior to me, just like someone isn't superior to someone else by being a nail tech or mechanic. it simply means that we are entering into a relationship where my needs and their expertise meet. seek a therapist who understands this, and understands themself as someone who can learn from you, too. this approach to therapy, and to care, mean that you can't just throw someone away or lock them up when they say things you don't like. it means that, even in those moments, there is something to be learned, and that the relationship will grow in that process of edification.

[castielspahdehrah]

Post-Therapy Vent

Keep reading or don't. Either is fine, but just know that my therapist gives y'all her seal of approval.

So, I told her about my experience w/coming back to Tumblr and how empty and meaningless it seemed.

First, she was proud of me for being vulnerable enough to take that step of even logging back in. She knows how isolated I've purposely kept myself for a long time now, so the fact I'm even back here and talking to people is a giant leap in the right direction.

Second, I told her what I write and why. Believe it or not, it's not just for the smut lol. The angst stuff I've written was me workin' through things, maybe not specific to my life, but workin' through general pain nonetheless. She said it beats her advising me to start a journal because she can see the value in writing fanfic and bringing about catharsis via fictional characters which is a safer, baby step towards IRL catharsis.

Like you guys have all said, she also hopes I keep my foot in the door, at the very least, because shutting this door and locking it back up now would only unravel the progress I'm making on my own, even without her help. She's told me before it's not so much that I need therapy, per se. I know very well where I stand and I know what's wrong and why it needs fixed. I just need a support system to keep going forward and she'll gladly be that for me.

Now, for the heavy.

When I first started seeing her, I told her I wanted to start fresh. I didn't want to tell her about my past history with therapy; the good, bad, or ugly, and I wanted her to give me her 2 cents after getting to know me. Now, without me ever saying a word, she knew I've already been or damn well should've been diagnosed w/C-PTSD.

She was absolutely correct on that one and I told her that I am ready and willing to do what's necessary to start working through it. She was surprised and impressed that I'm open to EMDR (Eye Movement Desensitization and Reprocessing) and/or DBT (Dialectal Behavioral Therapy). I do draw the line with Cognitive Behavioral Therapy and Group Therapy though. Even without giving my reasoning, she's not a fan of them either, but at this point I'm open to almost anything that will allow me to feel again, instead of shutting down like a damn robot. I don't even care that I could potentially feel 12-24 years of trauma all at once...at least I won't be both numb AND heavy at the same time.

Today, I felt comfortable enough to give her another breadcrumb...a diagnosis I was given at 16 yrs old and believed wholeheartedly that I had up until about 10 yrs ago. Like she said, it's like my symptoms had upended themselves and did a complete 180. Well, not only is that diagnosis "fluid" or "transitional" or can go into "remission" in a sense, it can also exist alongside a diagnosis that my surrogate sister thought I had. This is all to say that she agrees with me that a "re-diagnosis" is in order especially considering it's been 30 fuckin' years since the last one.

So, here's where we stand...

I'm gonna get referred to a psychologist for the "re-diagnosis" testing. In that same building, there should be a psychiatrist who can not only handle the C-PTSD therapy, but take over for my Primary Care Physician and put me on some meds that might actually help me.

Don't get me wrong, my PCP gets major points because he thought ahead enough to do a GeneSight test to see what medications I can metabolize and what ones I can't which is a damn sight better than anyone else has cared to do...however, he still didn't quite pick the right ones, as far as she's concerned.

In the meantime, she wants me to channel my inner nerd and really research my previous diagnoses compared to how I feel now. She's adamant (and correct) that nobody knows my body as well as I do and if I have a general direction to go in, the psychologist that "re-diagnoses" me won't waste anyone's time by looking in the wrong places first.

This is my healing era and it's been a VERY long time coming...but I had to be ready and willing to face it in order for it to do any good. The fact that I recognize this speaks volumes on how much I've already healed and just didn't realize it.

I'm no longer upset with myself for waiting this long to get back into therapy. I'm proud of myself for recognizing that it was finally time.

[never-not-ever]

It’s February. I can’t believe it’s February and I feel like I say this every new month. It’s February and I’ve been here since September and it boggles my mind. But that’s coming to an end soon. I say this all the time and then it always gets pushed back. But I’m fairly certain it’s happening this time. Let’s rewind a few weeks…

On the 22nd they officially put the state application in. Last I was talking about it on here it was only a “threat”. But I’m not going. I knew that when she first mentioned it a month ago, I knew that when she told me she wouldn’t send me there, I knew it when she actually submitted it and I know it now. That day she told me 2 weeks without self harm and I can discharge. Two weeks would have been two days ago. But I only lasted a week and last Monday she put me in the quiet room and on bathroom supervision. I was still able to wander the unit and have my stuff which didn’t make any sense but that’s the usual lately- things not making sense.

Last Friday things went back to normal: level 1 -> level 2 (and able to go to the rec center). 5s -> 15s. No more bathroom supervision and able to sleep in my old room. All privs back and with that, urges back too. I’m still on sharps though. When you’re on the state list you can’t be off sharps or on level 3 (can go on off grounds passes with family).

Last Friday she said “you could leave today as long as you have a therapist and psychiatrist lined up” which I don’t. And this was after there was talk of me signing a 3 day. That was also the first day she didn’t leave the meeting early and said I was finally starting to open up more and she’s willing to work with me, but it won’t be easy, only if I want to. So I said if there’s no self harm or SI then there’s no reason for me to stay, insurance won’t cover that and she said to not worry about that.

So fast forward through the weekend. Of course self harm happened. I think it was a week without it. Monday morning I met with my doctor and even after telling her I self harmed it wasn’t a bad meeting. It was sort of productive and she actually met with me a second time too. Even though shit happened none of my privs changed except I can’t go to the rec center which I don’t really care about anymore. So meeting with my doctor was actually good but then I met with my social worker…

Usually my doctor is the hard ass and my social worker is more calm one and we sort of talk more. But when I met with my social worker this past Monday and I said “I don’t know” to one of her questions regarding self harm and she did what my doctor did all last week “okay Deb I’ll see you tomorrow” and left early. Iwas so pissed off I left a few steps ahead of her, went to my room so fucking angry and then went and actually signed a 3 day.

Long story short, I met with my social worker that day, talked and retracted it. My doctor said I could leave tomorrow, meaning yesterday but I said I’d rather plan better for discharge and leave the end of the week. She said that’s fine I could shoot for Friday so long as I have aftercare set up but she’s still willing to work with me if I want to and doesn’t think I’ll be ready by Friday but if Friday comes and I say “I’m done” she’ll let me go.

Todays meetings were uneventful due to my part. I didn’t really talk to my doctor that long. Said shit happened again yesterday and that I just really want to work on planning discharge. Like what’s the point in all the other stuff, talking and “doing the work”. My doctor said how we’ll have to have a family meeting with my Nana so that she knows I’m still actively self harming. I said that’s stupid, I’m an adult and I live alone and she said how she’s basically my care giver and I live in her house.

So today I called my insurance company in between my meetings and finally did that task. My new plan starts Friday and I can get the information then. I met with my social worker, told her that I’m going to reach out to my PCP and my therapist.

I called the health clinic where my PCP is and asked if I could just have them refill meds since I’m not looking for new diagnoses. They said they’d get back to me. I emailed my therapist to see if she’d be up for coming here for one last meeting and to talk about aftercare and me possibly still seeing her and I’ll just do private pay.

I wanted to leave Friday but the insurance thing makes it hard. So my next choice was Monday but my therapist said she could come on Wednesday. And the kicker is that she’s out of office for 3 weeks starting on the 20th…

I’m not saying this to my team but honestly I’m either going to end up back in here during those 3 weeks or I’ll be needing to come back mid March (when she’s back) when anniversaries pop up and the hardest month of the year starts. So I’ll schedule a bullshit appointment with some random therapist at the local mental health center and not show. It’ll just be there as me having “aftercare appointments” lined up.

Even if my therapist wasn’t going away, maybe I’d make it to the first one or two sessions before needing to come back here.

In the end things aren’t as bad and hopeless as a few weeks ago. My thinking back then was very “I’m just going to end up back here in 2 days tops” and even though I’ve mentioned it in this post I really don’t feel like I’m angrily saying it like before. More so nonchalant “it may happen, it may not” but mostly likely yea. The self harm part… back then I was like “what’s the point in stopping in here when it’s just going to start up again out there” and now it’s just like who knows. I’m not defiantly saying I’m going to start it back up/continue it but honestly who knows what’ll happen.

That brings me up to speed. If I’m going to continue to update on here I should probably do it more often instead of months later and it be long as fuck.

[regular-lord-reckoner]

well, what a week this has been !!

our downstairs ac unit and our water heater decided to tear up at the exact same time !!

so, i spent a good chunk of yesterday just cleaning out the space to get the water heater so my mom wouldn't have to do any of it later

that was one good thing about it being 59 degrees down there! the upstairs one still works just fine but like....hot air rises so i even double checked, but yeah, 70 degrees with the fan on and it didn't do a damn thing for the downstairs so

anyway

i got it all cleared out and a plumber is supposed to be on his way now. he had some emergency cases come up but said he still wanted to come check it out.

my dad had told my mom that the water heater was going to go soon, so we kinda figured. i have taken two...very cold showers this week but it's all good. made the pink stay in my hair longer so there's that

had therapy after that but it was a good session so that was nice. she said i was doing better than i was a year ago and i guess i can see that. even a little bit of progress is still progress and even if i'm the only one that sees it

mostly what i've been dealing with is just...exhaustion. with all this wacky thermostat shit there have been so many nights the aux heat has kicked on downstairs and made it insufferable upstairs so i wake up at like 4 am and just can't get back to sleep

i've been working 50 hour weeks pretty much nonstop for months now but i'm trying to at least not get so stressed during the work day, especially when doing chores eats up all my time like it did yesterday

i ended up having to do all the work i was supposed to do yesterday today which ended up taking all day but i just took my time for the most part and tried not to get too overwhelmed for no good reason

good news, though!! i got it all done. i've been trying to help out my mom more since this whole neck/arm situation started a few weeks ago. i hate that she's been in pain for so long and we still don't really have any concrete answers.

her pcp just wanted to talk about other shit besides this injury but she did at least order an mri which i'm going with her to get done tomorrow so hopefully that'll give us some answers or at least figure out what to do next.

she's been able to get some relief but not entirely and it's also been causing her to lose sleep so we're a pretty sad bunch by the end of every week the pair of us but we're pulling through !!

in the mean time, someone did come out earlier about the ac and i think it ended up being something about the compressor? they'll have to order a part so it'll be sometime next week but i think the weather is supposed to get warmer then so if it takes a minute i think we'll be okay because i can then at least run the cool air upstairs and it should be fine downstairs

mom's keeping warm by the fireplace and has a heated blanket as well and she said at night she can run a little heater in her room and it works just fine so we'll be okay with that and i can take more cold showers if need be especially if it does heat up that's no problem

wild how the other day it started out 70 damn degrees and humid as shit and then it rained and dropped down to 40 degrees immediately

can't wait to see what kinda interesting spring weather we're about to have. also can't believe it's already march holy shit

the way i'm perceiving time these days is just completely and utterly fucked so that seems especially unreal to me

alright, i think i've rambled enough for now and i've typed a lot today so i'm going to give my fingers a rest (lol) and just scroll for a while, turn this old brain off as best as i can even though it never goes off completely

hope it's a good weekend for you if you're reading this, even if you have to work or have some other bullshit you don't want to do. try to get some rest somewhere in there and so will i <3

ps: plumber just got here !!

[vtforpedro]

personal/med update

My brain is fried mush right now. I survived my disability hearing on Tuesday. It was definitely informal, a little intimidating, but I feel I got through it well enough. My attorney said it’s a toss up because this judge is extremely professional and won’t give any indication and he sure didn’t. The vocational expert narrowed me down to like 3 jobs, then 2, then 1, then 0. I felt that was a good thing? Like am I not disabled if I can’t do any jobs? Either way, my age is working against me so we shall see. It’s very strange that you can be completely disabled and unable to work, but not by US law so they won’t provide aid. Blegh. Gotta wait another 1-3 months for his written decision. ._. Last Thursday, I noticed I had a ‘spot.’ I call them spots b/c I have eczema but I also had a bad ringworm infection in 2015 and called them spots then. Red spots that turn into rings. Anyway thought it was gonna be eczema but by Friday I was covered in many more. Cue me having multiple meltdowns about it interfering with my hearing if it got too bad lmao It didn’t, but it is bad! I had 49 ringworm spots as of last night and they grow in number by day. So, I went to see an NP b/c my dr couldn’t fit me in. Went as well as every other medical professional interaction has, which was terribly, and left me in tears and feeling beat down yet again by the medical field. She wants disabled me, who was bedbound for eight months and currently in PT to recover, to put cream on 49 spots and counting. With IIH and nerve damage that limits my movement and ability to stand for longer than 10-15 min. But she kept interrupting me and wouldn’t let me explain any of this. Her notes said ‘she is not usually terribly active’ so I guess being bedbound translates to that somehow??? She also said I had 3-4 spots on my breasts which is not what she was told by me or what her MA wrote down. lmao so guess who had to message her pcp again!!!!!!!! A completely healthy person can’t be expected to put cream on 49 spots 2x a day. For me, this involves washing my skin since I am unable to shower every day cause of the whole disabled thing. She said a lot more bullshit about my swollen feet and fatigue, so basically I got zero help. It was barely a 10min appt. Fucking hate them, I swear. She refused to give me the oral anti-fungal cause of my other meds, but my mom asked the pharmacist today and she said I’d be fine to take it. The pharmacist asked, unprompted, if an NP, urgent care or ER doctor said no to the oral pill and my mom was like YES! And she said they don’t understand it and won’t give it despite it being used every day even for yeast infections and athlete’s foot. She said her friend went through this shit too trying to get the oral pill. Back in 2015, I suffered this infection for 5mos while applying for health insurance/getting approved/waiting for a pcp because no NP, UC or ER doctor would give me the oral med lmao I saw my new pcp finally and he was like uhhhh no here’s a prescription for it you have way too many spots to worry about putting cream all over your body. Y’all I had been washing my sheets, towels, clothes, taking apple cider vinegar baths, soaking my spots in ACV, then applying one of five or six otc and prescription creams EVERY DAY. I spent two hours twice a day in my bathroom. Ringworm was what I did every day all day for five fucking months. I cannot fathom doing that again. It’s insanity. I was close to a mental breakdown and I only had MH issues back then, none of the physical stuff. I hate it here man Also why do I keep having shit happen every time I turn around. No idea why my feet are swelling, no idea why I have this abnormal fatigue that makes me teary because I sit here and stare at my screen unable to think of anything else but how tired I am. Like for long periods of time. She said to talk to my psychiatrist about it HOOOOOOOO. I woke up this morning and immediately started crying. It’s triggering being treated this way after three years of it. I should’ve waited to see my pcp and used otc in the meantime or something, but my pcp wanted me in asap for my swollen feet so I could get lab orders. Which, according to this NP, ‘there are no labs for swollen feet.’ Where did they get this lady She’s like WHAT ABOUT YOUR LEUKEMIA DID THEY CURE IT? I’m like my chronic, lifelong leukemia? No, it is in remission lmao chronic is right there in the name ma’am. It’s the first word. HHHHHHHHHHHHHHHHHH I’m gonna go cry again sorry for ranting I am so so so fucking sick of medical professionals and I cannot wait for it to slow down but my february is completely booked and march is halfway there. Chronic pain life baby!!!!

[wyrdify]

This is not at anyone here. This is at the U.S. healthcare system, particularly as it relates to neurodivergent trans people. Rant below the cut.

So, back in April, I asked my med manager for a referral to get evaluated for autism. Said med manager does not do it herself since she doesn't do diagnoses, and neither does the facility she works at, so she referred me out. I was then told that the place will be in touch with me to get me scheduled, and this may take up to 6-12 months as they have a waiting list. But, I can check on that referral at any time by calling them. Cool.

More background information: I started taking Effexor more than a month ago (probably close to two months now) since Zoloft, my old anti-depressant, wasn't really working. I noticed that, on the 75 mg dose of Effexor, I sometimes experienced brain fog, muscle weakness, and other things I associated with my seizures. Effexor worked, but I felt it was also lowering my seizure threshold. Med manager, who prescribed the Effexor, told me to contact my neurologist about it since my neurologist handles my epilepsy. Fine. No problem. That usually isn't an issue.

I couldn't reach my neurologist. I called her office at least twice and had her medical assistant call me back, who promised me my neurologist would call me back. That never happened. So, I tried another method, which was MyChart. I sent a message to my neurologist there on July 6, and I never heard back. Nothing. I don't see her until the end of November, so now I need to try and basically move up my appointment just to get a basic question about a prescription answered. I schedule my appointments with her a year in advance, so I don't know how much luck I'll have there.

So, that's one fail of the U.S. Healthcare system. Let's move on to what happened yesterday and today.

Yesterday, I meet with my med manager to go over a few things. I bring a list with me because not only has it been about a month since I last saw her, but I wanted to get the ball rolling on a couple other things. I wanted to see if an evaluation for ADHD was separate from the one I was getting for autism, and I wanted to get a referral letter for top surgery. For those who've known me for a while, you've known I've lived with gender dysphoria since 2016-17. It's been a long time. I want to get that started now and not keep waiting around.

What she ended up telling me: an ADHD eval is part of the autism one I'm going to have since it's a full neuropsych eval. Okay, that makes sense. Cool. I move on to the next subject: top surgery. She tells me to go to a place in the city to talk to them about surgery. They don't do anything with top surgery. Yes, they do gender affirming healthcare, but I was specifically asking for a referral letter. I looked into what I needed for top surgery in my state before this appointment (not directly before, but days before). I need at least one letter from a mental health provider for it. Why did my med manager refer me to somewhere that doesn't do that and will likely just tell me to go back to her?

She said that she or my therapist, who works in the same facility, could write the letter, but still. STILL. She sent me to another place first. I am a trans person who doesn't need hormone therapy. I need top surgery. My gender dysphoria is well documented in their system. I checked. It became abundantly clear to me in that moment that she doesn't have many trans patients. At all. That facility in general probably doesn't considering the last med manager I had there was transphobic. Anyway.

Today: I called this morning to check on the status of my referral for the neuropsych eval. It turns out that they couldn't accept my referral because they don't have a specialist, so they sent it back for my PCP to handle (same facility as my med manager and my therapist). My med manager didn't see this at all. I'm not even sure she was looking at my chart to be honest. If she did, maybe she would've saw this and said, "Oh, I need to refer you to somewhere else or have your PCP do it." But no, I get to be back at square fucking one again. Because I couldn't ask my med manager to get that referral for a neuropsych exam. I had to go through my PCP to do it. Make it make sense.

I am so goddamn frustrated with this system. I'm just trying to take care of my health and be somewhat proactive about it, but I fucking can't. At this point, I don't know what to do. I might leave this facility all together and start over with a new PCP, new therapist, and new med manager. But, then I run the risk of not being in therapy for months, not seeing a med manager for months to a year, and not seeing a PCP for months to a year as well. And I'm in the middle of a med change too. Not only that, but I don't want to be a difficult patient or someone who just quits doctors or places willy-nilly. This is my third med manager, fourth therapist, and fourth PCP since I moved here nearly 10 years ago.

I don't know what to do. What the hell do I do? I want to cry, scream, rage. I hate this healthcare system so much.

[findingmypeace]

3/26/2023-TW: eating disorder

I’m going to put this behind a cut because I’m going to mention specific ed behaviors and some medical symptoms I am experiencing. (Edit: this turned out really long. Long story short: Ed behaviors are out of control. I’m experiencing some medical symptoms which is overwhelming for so many conflicting reasons, and now the talks about me going back to treatment have started.)

That’s the summary but you can read the long version if you want, lol.

Ok, the ed really isn’t good. Like at all. As part of the distraction/avoidance the b/ping has been out of control. Like this is the worst it’s ever been. It’s such a numbing behavior. I’m not thinking about anything if I’m b/ping. At this point I am utterly addicted. I have tried a few times to cut down on this behavior but by the end of the day I’m back at it. I am spending way too much money on binge food. That’s one of my motivators to reduce the behavior (and I really do try to reduce money spent) but so far it’s not something that stops me from doing it long term.

On the other hand, as much as I really, really, want to downplay it I am experiencing some medical symptoms. I have so many different emotions related to these symptoms that in the end I just kind of shut down in frustration. But this week things kind of came to a head. A lot of it involves my coworkers aka my new closest friends but I think I’ll address that in a different post.

Starting at the beginning of last week I just wasn’t feeling that good, physically. I have felt this way before and most of the time I just brush it off, push through it, and it goes away. It’s usually just dehydration so I try to drink more hydrating fluids and move on with my day. This time it didn’t go away. By Thursday it was pretty bad. The symptoms I was experiencing was mostly weakness/fatigue, feeling like my legs were going to collapse if I got up too fast, and (I don’t really know how to explain this) I guess feeling like I would also collapse (not faint) if I walked or stood for too long. Additionally, on Thursday night, as I was changing into my pajamas, I noticed that my feet were swollen. Like really badly, the same way they were a couple of years ago which led to everyone freaking out about my heart and pushing me to go back into treatment. (This has been going on for a few days now and it’s only gotten worse. I literally can feel the skin on my feet stretching from how swollen they are.) Honestly, because everyone freaked out about this last time it happened I’m kind of worried about it.

My therapist asked me to call my PCP so on Friday morning I did. They sent me to urgent care and urgent care sent me to the ER. Again, this is where I get so overwhelmed that I end up just feeling frustrated and then shutting down. There’s just so much going on in my head, a lot of conflicting emotions and thoughts, that I can’t deal with it.

Past evidence has shown that NOTHING is ever wrong. Like ever. I am fine. I always am. So while I was feeling so many different things I vacillated between being scared and on the verge of tears for being in the ER and not yet know what was going on and also feeling really frustrated with having to spend my day there. I was pretty sure I was just dehydrated. Give me a bag of fluids and let me go home. And guess what? I WAS RIGHT!. All tests came back normal (as always) except my labs showed that I was dehydrated so they gave me a bag of fluids and let me go home. Hahaha! I do still have to follow up with my pcp (appointment scheduled for Thursday).

At the same time, if I’m really honest with myself, I don’t feel very good. Like I mentioned above my feet are still really swollen. Like to the point the skin is stretching. And I feel really, really weak. To the point that I can’t walk very far without getting out of breath and feeling like I need to sit down. I still feel kind of like I’m going to collapse. It’s just not as bad as it was. I really don’t know what is going on which, once again, causes me to feel very overwhelmed with a million different emotions. Just make it stop! Let’s pretend nothing is wrong!

Since the ER I have tried very, very hard to do better with hydrating and in a weird way also reduce the b/ping. I’m taking in more fluid. I don’t want to end up purging that fluid because I know my body desperately needs it so I wait a little while and then I b/p. Just by waiting like that the number of b/p’s in a day has reduced.

Last thing, but probably the thing I am most upset about. My new therapist is an ed specialist. She knows her shit. For me, I see that as both a really good thing and something I hate. I’ve been keeping her updated about the ER, etc. I got a text from her on Saturday and she wants to have a session asap (we’re currently not scheduled until April 4th), like at first she suggested to have one that day aka this past Saturday! We end up scheduling for Wednesday. However, the thing that really upset me was her saying that we need to talk about getting me on some waiting lists (ie: for treatment/HLOC). Uh no! I am NOT going back to treatment. I told her I didn’t want to go back and she said we would talk about it in our next session but that she wants me to get on some wait lists because it usually takes a few months to get to the top. Still, no! Not after last time. Not now that I have my dream job. No! Not happening! I can’t. I will lose too much of the life I have tried so hard to build.

Now that this is super long, as you can see the distraction/avoidance is relieving the actual emotions of the depression but reality is peaking through and, honestly, it’s making me freak out. A)I just hope nothing is seriously wrong medically. I do NOT want to go back to treatment and B) It’s nice to not feel such incredibly painful depression every second of everyday. Seriously, the distraction/avoidance, as unhealthy as I know it is and as much as I know it’s making things worse, it’s so much more pleasant than being in so much emotional pain that you want to die. Double-edge sword.

[shoutsindwarvish]

i had what might’ve been a neurological event over a month ago (that i wrote off as psychosomatic until my therapist told me to talk to my doctor) and my pcp referred me for an mri to find out for sure. all well and good (albeit nerve-wracking), especially since i’m lucky enough to have the money for it right now. i’m scheduled to get it in about a week.

i had an regularly scheduled appointment with my psychiatrist a few days later and told her what had happened and also that i have a lot of anxiety about it but otherwise feel fine. she freaked out and told me to reduce my antidepressants immediately because she thinks it might be serotonin syndrome. even though 1) i looked up the symptoms of serotonin syndrome and literally none of the symptoms match, 2) it makes absolutely no fucking sense because i’ve been taking the same meds for over a year and never had this happen until now (and the other two similar events in the past happened BEFORE i started taking new meds) and 3) she didn’t even bother saying i could have adverse effects or ask how i’d like to proceed. i mentioned that i know i’ll have withdrawal and if it’s necessary she just ignored me and told me to do it

that was thursday and the ssri withdrawal is starting to hit real bad and i’m bitter because i don’t think she gives a fuck that she’s causing me suffering and she just wanted to feel like she was doing something and now i’m dizzy and nauseous and feel Wrong™️ and it could’ve been completely fucking avoided, i felt perfectly fine other than anxiety (which lowering meds will not help). this is not the first time she has made a med change without giving a shit about my input. (yes, i could disobey her, but that creates other problems.)

basically i wish psychiatrists who actually give a shit weren’t almost impossible to find so i don’t have to settle for one who doesn’t treat me like an addict when prescribing adhd meds

[area51-escapee]

I’m sorry I’m still so pissed off about this. I’ve been dealing with this for nine months now. I’ve been seeing doctors for eight months now. I have repeatedly been dismissed and brushed off, misdiagnosed multiple times, outright lied to, I’ve left multiple appointments in tears after once again being told my tests are clear and that’s that, but today??? This shit????? I feel like I’m losing my goddamn mind, this was by far the worst and I just keep repeating it but I’m so angry, I’m angry that it happened and I’m angry that I didn’t tell this doctor to fuck off like I should have, but also I was just so stunned I spent most of the appointment just staring at him like

For nine months now, I’ve dealt with a series of symptoms that seem to have appeared just. Out of nowhere. What started as a minor ache in my left knee progressed into serious pain, pins and needles in my legs, severe fatigue, a constant tremor in my hands, losing the ability to walk unassisted, I began using a cane in December because I become so unsteady after a short while, a noticeable change in gait, I developed weakness in my legs to the point it took four months of physical therapy to get me close to where I was before, and finally involuntary movements in my limbs, including dystonia in my right leg. And I don’t care if I’m over sharing my medical issues online I don’t give a shit I’ve spent months talking to medical professionals who won’t listen so who gives a shit if I share it all here too since it doesn’t seem to be that important.

I’ve been to several doctors about it, all of them say the same thing, my tests are normal, so I’m fine, or I need to see a different doctor, or I need to make a second appointment if I want to address the thing I originally came in for that they chose to ignore. I had to stop seeing my PCP after she told me that my problems were above her pay grade, that they are too overworked and underpaid to do the things they say they will, and then cutting me off of a necessary medication because she was angry that I asked her to switch me to the generic version. I started seeing a new PCP and when I told her all my problems she referred me to this neurologist. This is the second neurologist I’m seeing for this issue. The first ran all the tests, they were normal, I’m out of luck. I also saw a neurosurgeon who told me that my symptoms weren’t neurological and to see someone else. So I’m referred to this neurologist, who specializes in movement disorders, particularly for the spasming in my right leg. The first appointment is with an internal medicine doctor who gets all my history and symptoms and also told me the leg spasms are dystonia. Today was the second appointment with the movement disorder specialist and I’m just. I’m going to list the things he said to me

He told me that wearing a mask is useless and ineffective.

He told me I’m addicted to my ADHD medication (I am not)

He told me repeatedly that all my symptoms are drug induced (I have been assured several times, including by the internal medicine doctor I saw two weeks ago, that the meds I’ve been on since long before these symptoms started are not the cause)

He told me things like “the garbage in our food” and “plastics” and implied that even childhood vaccines cause the symptoms I experience

He told me I need to get off all my meds and find alternatives for them

He told me I need to replace my preventative migraine medication with Botox injections (solely because Botox injections aren’t Pharmaceuticals I guess. Also it took me many painful years to find the right migraine medication for me)

He told me I’m overly anxious and terrified of catching an infection and dying (his only source was I’m on anxiety medication and I choose to mask)

He kept saying my symptoms weren’t “too severe”. When I tried to explain the extent to which I cannot walk without a cane he just doubled down and told me it’s not that bad because I can still “get around” (I am 24. I started using a cane at 23. I am not ashamed of using a mobility aid but needing one suddenly at this age is a sign something is WRONG)

He sent me home with information about diets that cut out anything slightly enjoyable and prescription protein drinks that aid in intermittent fasting (if he had listened to me for even a second I would’ve explained how my symptoms stopped me from preparing food and how I have no appetite and no interest in food the majority of the time. I have a feeling he wouldn’t have cared and would’ve continued to blame it on the Drugs™️)

I kind of wanted to laugh, I kind of wanted to cry, I kind of wanted to start beating him with my cane. And I’m still so angry. I waited months for this. I took off work for this. I paid a copayment for this. I put so much hope into this and all I got was. That.

I want a second opinion before messing with any of my medications. They have overall been a positive in my life and especially the psychiatric meds are not something I want to play with lightly. I’ve already scheduled a follow up with my PCP who referred me to him to. Discuss all that. Ideally I’ll be less angry by then.

I just feel hopeless. I’m scared because I don’t know what exactly is disabling me, I just know I suddenly became disabled one day, more than I was already I guess, and it’s been nine months and I still don’t know. Why. I don’t know what happened. I don’t know what’s going on. I don’t know if it could get worse or happen again. I don’t know how to treat it, if it can be treated, I don’t know anything, and all the people who are supposed to know keep looking at the tests and telling me it’s good news! My tests are clear! And then ignoring the fact that all the symptoms are. Still there. I don’t know what to do. I think about walking into traffic or jumping off something high up not to try and kill myself but to just be hurt enough that people can see it, that people will believe me, that finally something will be done to help me. It’s not something I would actually do and the thoughts scare me but I’m so scared from not knowing what to do. If it were a broken arm or a fractured leg they could see that, they could treat that, but they can’t see it, they only have my word to go off of and the test results, and my word says I’m falling apart and the test results say I’m perfectly normal so what is there to do I guess. I don’t know.

[bittwitchy]

i’m gonna be a thousand percent real w you guys for a min, its gonna be under a read more, and it revolves around fears and pains and scary medical things and g/ov3r/nm3nt bullshit and stuff which is uhhh destroying me mentally and physically ig ahahahhaa

so like as some ppl know, when i was leaving work late nov/early dec of 22, i fell and injured my ‘leg’, it was a few days before i turned 26 and i couldnt get a doc appt in time w a real doc, and ofc bc i was on the male parentals insurance and it was based out of texas despite US being in california, i got completely fucked over bc they didnt want ro cover shit and i had to argue with them til almost the very end of december or so just to see a nurse practitioner who didnt know wtf she was gonna do, and refused to listen to me when i said i was not going to have insurance in a week. i cannot afford any expansive anything right now and anything that i have to do needed to be done before the end of december. all she said was ‘i hope you get better then, but they will call you when they feel like it.’

its been over a year, im still not better, because i was not clocked in at the time, and was injured in the parking lot, hr already said they wont cover it. even if i was only at that location (not my home location) for them, i was not clocked in and therefore they hold no responsibility, and the parking lot had no cameras anyways. its all just word of mouth so. i got fucked there too. C/alo/ptima has been fujcing useless and wont even send me my new insurance card so i can get a new regular pcp who will refill even just my fucking inhaler because the guy they gave me refused to even refill that.

now, when ive gotten the leg scans, they cant find anything. they dont know whats wrong. ‘oh youre just fat, lose weight and you’ll be fine.’

breathing shots pain into my leg. and the pains been spreading. ive been getting a little bit of weird treatment at work despite dlat out ignoring and pushing through my pain to please people and that wasnt even enough because i still got some pretty weird ass treatment from some ppl in management despite the fact im not choosing this, and ignoring it makes everything worse.

and ive been trying to push through and ignore it and hope it heels, because the medical system isnt going to help me, neither is the company, and i live in california. i really just cant afford the medical system here anyways.

i think when i fell, it clipped a nerve into my spine, because for those unaware im that special brand of au/tistic who can tell you the exact point of origin of my pain. from tooth pain to headaches to even searing body aches, i can tell you where it starts and where it ends. but i also have a massive pain tolerance (ive had 8 root canals and local anesthesia doesnt work on me thanks to adhd, i can and have had 9 bottles injected in and nothing happened, so i just dont use it and ignore the horrendous fucking pain of your nerves being killed because i dont want to bother anyone. THAT is my pain tolerance level, and i cant tolerate this.)

the pain is spreading to both of my legs, and when i ignore it i end up toppling over. i used to be a hula dancer, professional as a kid, still for rec until i got hurt. i cant do it anymore. i can barely walk. when i force myself into events and shit that requires walking, it feels like my entire body is being crushed the next day, and during the actual day of doing but thats obvious.

i dont know how to take it anymore, nothing is helping, no one is helping me, and even people who try to help me its like the system is working for them despite refusing to work for me. i really well and truly dont know what to do about this anymore. the pain from my spine isnt only in that leg now, its in both legs and keeps creeping to my arms. im obviously not gonna get help from the company, and even talking to a lawyer its a fucking long shot that i could get anything done from them at all since the parking lot didnt have cameras. i already have eds, and this has been setting off the issues relating to it even more. i was meant to get tested for pots before i lost insurance back then, but new doctor doesnt believe women can experience pain at all, and are lying for attention if they admit to it.

breathing is fucking painful, and i dont know what to do. i can just keep doing what im doing and ignoring my pain and pushing through to please everyone because its not like the system helps, but the system is working for others and when i do what they recommend i do it not only still doesnt work for me, but i get threats from it. i dont know if its because im autistic or not, indont know why it works for others and not for me, i dont understand and when i try to get answers all people say is ‘just push through’ but im trying and its making everything worse and im breaking my body more and more by just pushing through and indont want to get kicked off of c/alo/ptima for bothering them too much by not getting answers despite my efforts because i did get threatened and incant afford $250-500 monthly fees from my state if i dont have insurance. $250 is more than i earn a week. jts not like im getting hours at work. and i really just am so fucking broken and tired and confused and done i dont know what to do and im tired of being in pain. i just want the pain to go away. i dont want to cry anymore. i dont want to be confused and scared and alone anymore. its like everythings collapsing down and i dont know what to do.

and to top it all off, the skin welts and lesions that my old doctor was so terrified of me having are back. theyre a symbolism of my white blood cell count, and last time i got them he had me get blood tests every few months because he was worried about my developing leukemia. and everytime it got too high he gave me something to try snd prevent it, and ultimately i was ‘almost there but narrowly escaped’, and i dont know how im supposed to just keep pushing and keep living and keep going it that happens too. especially when incant afford a blood test right now. i dont know what im doing or who i am anymore and its destroying every semblance of who i am that i had left, and i just want to make everyone happy but im not happy. im not happy snd im not getting help snd i feel so defeated and indont understand how other people can argue andnits fine but i do it and i get threatened or retaliated against.

indont understand how if i do whats recommended im misbehaving and being wrong but others can do what they want. its like im a kid again but instrad of being beaten im just getting fucked over medically even more snd my body gets to further destroy itself and i dont know whay the fuck left there is to do. its like everythings collapsing down on me, jm not getting the samw care or treatment others get, and i dont think im going to because i cant keep fighting a system thats going to only verbally threaten me because they wont respond to emails. i cant use recorded conversations in court here. im scared and im tired and im in constant pain and had to beg my old doctor to send an inhaler refill without my seeing him because the new one wouldnt and my lungs were giving out. i dont want to die but it feels like its heading rhat way whether i want to or not because nothing and nobody will help me and when they try they get mad at me for ‘not trying harder’ but im doijt everythint they say and more and its nothing. nothings coming crom it but my suffering. but if i say its not my fault its ‘making excuses’ and injust cant keep doing this anymore. im so tired, and im in so much pain, and indont know what to do.

[steamishot]

end of oct

since my last post:

went with my parents to toyota north hollywood with the intention of test driving a corolla cross hybrid - they are looking to replace their 2003 highlander. my parents had purchased the highlander in 2003, a lexus sedan in 2013, so it *made sense* to purchase another car in 2023 lol. instead, we walked out purchasing a gas rav4. it was a 5 hour process, and i left early because i had I&I's wedding to attend. it's a cute panda color car but i haven't had the chance to drive it yet. there was a lot of negotiating on the price; they would not waiver on the markups and we ended up purchasing the car for about 11% over sticker price. i didn't get a chance to do much research before the car buying process and it seemed my dad just wanted to get the process over with because i was in town. so, we got an OK price - not the best but wasn't overly ripped off either

my ultrasound results came back fairly normal. the gyno office also looked at my results and said things are fine now, and to do a follow up ultrasound in 6 months. the transvaginal thing wasn't too bad. there is a 14mm echogenic area around my right ovary that may represent a small benign ovarian dermoid. i should keep better track, but i think i feel the most tension during ovulation. i have scheduled an in-person visit with my PCP in january to do a physical examination and pap smear.

I&I's wedding was very sweet, my first and last korean wedding (as i have no other korean friends). we were surprised that we got invited because the wedding was pretty intimate (<120 people) and we haven't kept in touch besides a few zooms for years. G&I got ready at M's place, where she helped me do make up. it was much heavier than usual, so i felt uncomfortable looking in the mirror that night lol.

the stress of everything (matt's long working hours - he again had to work a 100+ hour week, job search failures, not moving at the same speeds because of his work hours, constant state of limbo, also my moms daily questioning of his job prospects) had me feeling extremely overwhelmed after this whole redlands incident. i had asked for chatgpt to give me some advice, which it churned out very insightful words- the thing i struggle with most is having *realistic* expectations. it's been difficult for me to come to terms with choosing to stay in NYC longer than i want to, because i feel we should be more in control of our situation after training. anyway, recently i have taken job searching into my own hands. now there is a better understanding of what jobs matt is looking for. i have way more time and energy to search for jobs/email people and monitor job postings. norcal, we may be coming for ya. thanks chatgpt for helping me with writing cover letters and for being a virtual therapist.

i arrived in NYC last wednesday morning (red eye flight), and we had a weekend getaway at the same machimoodus getaway cabin on saturday. hertz gave us a chevy bolt this time. it was a little stressful to figure out the charging situation (and it charges much much more slowly than a tesla). i actually quite enjoyed driving the car and may consider purchasing a non-tesla EV in the future. we got to hike and see beautiful fall foliage. prepared hot pot this time, and a yummy miso-garlic butter pepper steak (marion grasby recipe). i also enjoyed skim reading the "how to get away book" written by the getaway founders.

i saw my japanese friends M&K yesterday, and got to meet baby girl E. it was about a 3 hour hangout, and we were at a coffee shop's rooftop the entire time. we stumbled across this coffee shop randomly and it worked out perfectly. the rooftop was private, spacious and the weather was great. per my usual self, i was very nervous to meet them again because i had not seen or talked to them much in 4 years. my social anxiety is dormant more frequently in my 30s, but it still reactivates often enough haha.

there were two friend's bdays this month: S & K. K was supposed to meet us at the getaway, but ultimately she and M have decided to break up. it was one of the hardest decisions she's had to make and it's been a difficult time for her.

[health-insurance-struggles]

Types of Health Plans

This post is going to suck to read. I know it will, because it sucks to write it because it’s boring.

Time to put on your big kid pants, because it’s important.

Let’s talk about the three major types of plans and three major types of healthcare accounts, and the talking points of each.

Preferred Provider Organization (PPO) - A general health insurance plan, and (in my experience) the most common. You can go wherever you want for healthcare, but you’ll pay less if you stay within the preferred provider list (a fancy way of saying in-network providers). You don’t need a PCP to refer you to a specialist.

Exclusive Provider Organization (EPO) - You only have coverage for in-network providers. You have no out-of-network coverage, except for emergencies. You don’t need a PCP to refer you to a specialist.

Health Maintenance Organization (HMO) - A very specific insurance policy that covers only certain healthcare provider systems (think hospital systems across a large metroplex). It is usually cheaper, but your choice is significantly more limited. You will need a PCP to refer you to a specialist, and you’ll need special permission from your insurance for an out-of-network provider to be covered.

Fun, right? Not confusing at all. It gets better! There are also healthcare accounts that your policies can offer. Let’s talk more about them.

Health Savings Account (HSA) - Pre-taxed money lets you pay for medical expenses (that qualify). You can invest money into the HSA and it rolls over every year to any employer. Basically, the funds never go away—new employer, new policy, and retirement don’t affect your HSA. This is usually associated with a high deductible, lower premium plan.

Flexible Spending Account (FSA) - This is associated with more traditional health plans. It’s also pre-taxed money, but it expires at the end of the year. Both you and your employer contribute to the fund, but anything you don’t use goes back to the employer, not you. The money doesn’t roll over each year or accumulate between employers. There are FSA plans all over the map in terms of deductibles/premiums, so it’s hard to generalize which one it’s associated with the most.

Health Reimbursement Account (HRA) - I’m going to be honest, I don’t know as much about this one because I personally haven’t worked with one. From what I know, it’s an employer-owned and funded account to help members bridge the gap on their health insurance. You can usually use it to pay copays, deductibles, and coinsurance. This doesn’t roll over and you don’t carry it with you, but your employer is the only one who pays into it.

Confused? Yep.

So how do you pick one? Well. I can't tell you, because it's up to you. But in my opinion...

I have a lot of health problems, so I want the largest network possible. I don't want to try to make a PCP appointment every time I need to see my specialist(s). I'm young and I don't plan on staying at the same employer forever. I'd pick a PPO HSA plan, because of the flexibility of the provider network and the rollover of the account. This will probably be a more expensive premium each month, but for me, it's worth it.

Maybe you're in excellent health. You've worked at your company for decades and have no plans of leaving, and you go to your annual check-up and that's it. Great! Maybe you are fine with an EPO or HMO plan and an FSA. Those could be cheaper premiums.

It's up to you. It depends on your needs and your spending preferences.