#I need those appointments to get my meds and it takes 6 months to get one so I guess I’m missing class that day lol

[binders-and-beanies]

There’s always some sorta fuckin scheduling complication lol

[abalidoth]

Anon was looking for advice?

Right now: do something other than social media or reading the news. Play a game, pick up a hobby, go for a walk, try a new recipe, ground yourself in something. Let your brain process everything by putting it on the back burner, let it percolate. Remember that you do have a voice, that the worst thing you can do is check out, that the most radical thing you can do is be kind.

Next few weeks: Keep working on the things that bring you joy. Make plans for the future. Assess where you are and where you want to be — physically, mentally, personally, geographically. Schedule doctor’s appointments. Delete your Twitter. Make new friends, connect with old ones, talk to your neighbors, join a community group. If you have a supportive family, talk to them too. By propping up others, teaching others, reassuring others, you help yourself too. Find a mutual aid group. Keep your head up. Love yourself and don’t wallow in despair. Remember that you do have a voice, that the worst thing you can do is check out, that the most radical thing you can do is be kind.

Next few months: execute on the plans for the future. Keep going with those hobbies. Keep loving yourself. Read reliable, fact-based news. Delete your Twitter (for real this time). Bake bread for your neighbor. Celebrate the holidays. Buy concert tickets as far out as you can, give yourself things to look forward to. Volunteer at a community center. Take a class. Teach others about how us queers and faggots are just people too. Remember that you do have a voice, that the worst thing you can do is check out, that the most radical thing you can do is be kind.

Next 6 months: Keep executing your plans. Write your representatives. Plant a little garden. Learn an instrument. Go to a zoo. Keep reading fact-based news (AP, Reuters, ProPublica, NPR even though it’s a bit biased to the left). When the sun comes out, get some bread, cheese, apples, and grapes, put them in a basket, go for a gay little picnic. Don’t make another Twitter account. Stock up on meds. Learn a new TTRPG. Pick up a fibrecraft. Remember that you do have a voice, that the worst thing you can do is check out, that the most radical thing you can do is be kind.

Next 4 years: make little baby steps to move towards your plans. Keep building relationships. Vote in local elections. Volunteer for state or national elections. Recognize that you live in a stupendously large country with assloads of diversity. Love yourself. Lift up other people. Remember that you do have a voice, that the worst thing you can do is check out, that the most radical thing you can do is be kind.

Shit is going to be really really rough for many many people. But if you’re reading this, you can’t give up, you can’t give in, you have to keep going. If you’re trans, if you’re queer, if you’re a freak and a faggot, you have to live.

Full disclaimer that I live in western Washington state, I’m white, I have a tremendous amount of privilege. I do my damndest to help people and use my own privilege to help others. I’m not perfect nor infallible, but reach out if you need something.

And if you’re still reading this, I love you.

Thank you. That helps a lot.

[thebastardgerard]

Recently, after reading my friend @metalheadsforblacklivesmatter ‘s posts, I thought it was finally time to share my own story experiencing medical racism, transphobia and sexism.

TW: MEDICAL TOPICS, RACISM, TRANSPHOBIA, SEXISM AND EDS.

Somethings about me and disclaimers:

For those who don’t know me, hi hello, what’s the dealio? My name is Kuco, I’m a two-spirit black-indigenous mixed person. I am light-skinned, but most people can tell I’m mixed or assume I’m Latino, to the point where my medical documents mark me as Hispanic despite myself telling them to change it. I’m also AFAB.

While my experience is bad, it’s not unique to just me. Other people who are apart of the BIPOC community have faced the same or much worse. Regardless, please listen those in the community with darker skin. They often face much worse. If you’re only comfortable listening to those with lighter skin and feel more comfortable while claiming you’re an ally, you’re wrong and need to do better.

My story:

In 2021, I was experiencing nausea and vomiting after I ate. After a week of this continuously happening while working, I went to see a doctor who sent me to a surgeon, who sent me to a gastroenterologist to see what could be done without surgery.

This doctor was a cis white man in his late 60s who was apparently “retired.” After pointing out my symptoms and how they were getting worse, he looked through my medical history and noticed I had anxiety. He immediately went to the conclusion of a “brain-to-gut” connection, saying it was often found in woman. (Shock to no one, that wasn’t the case. Also, the issue was not my anxiety. My anxiety has progressive gone down and was at the lowest it had been in YEARS. My therapist at the time even confirmed this himself.) During this time, he also repeatedly referred to me using she/her pronouns, despite that my medical record points out that I am transgender and went by he/him pronouns at the time. (Despite me pointing this out, he continued to ignore this.) He gave me medications that were supposed to help, a doctor’s note (as I worked at the time) and sent me on my way.

Things only got worse. After 6 months of my symptoms getting worse and worse (to the point I could not eat solid food and started vomiting liquid) and several tests, he still believed it was a brain to gut issue. I had lost a lot of weight, to the point my own family noticed.

One of the last appointments I had with this doctor involved what’s called a gastric emptying test. For this test, a radioactive isotope (which isn’t harmful to humans) is put into some eggs and ingested. Pictures are taken of your stomach to track how long the isotope stays in your stomach after 2 hours, 3 hours, and 4 hours. Normally, your stomach is meant to empty at the 2 1/2 to 3 1/2 hour mark. (By what I was told, mind you.)

My stomach emptied finally at the ladder end of 4 hours. This was considered on the way lower end of normal.

Once my doctor got this result, this was his response: The test says that your empty is at the lower end of what was normal, so that’s normal. Just keep taking your meds. It’s more common for Caucasian (white) people to have more serious gastric problems. Just so you know, I’m not writing you another note for your work, it’s not what I do.

This is what broke the camel’s back.

I called my primary care doctor and let her know that I wanted a different doctor who was a woman to see. I told her that he wasn’t listening to me nor taking me seriously and I refused to see him again. I also let her know that he was refusing to write me anymore work notes, despite the issue not being resolved. (A small time after this, my job let me go due to not having a return date. They said I was allowed to reapply afterwards, but I didn’t for different reasons. That’s another story for a different day.)

My primary care doctor sent me to a different doctor who was a woman and also happened to be a POC.

I had an appointment a week later, in which I told her all my symptoms and how I was barely able to eat it drink anything without being nauseous and vomiting. She listened to me while looking at my previous results from previous tests, in which she saw my gastric emptying test.

Her response was: Your test says your emptying is on the lower end of what’s normal, but by what you’re saying, it’s only gotten worse. Why didn’t he give you anything? I’m surprised you’re even talking to me right now.

I told her that he had said that due to my anxiety, it was a brain to gut issue, which was common for “woman” and continually insisted on that, as well as his other comments. She concluded I have a condition called Gastroparesis, or delayed gastric emptying. This is a condition that affects the stomach muscles and prevents proper stomach emptying. While there isn’t a certain idea of why it happens, it’s thought that those who previously suffered from EDs and have diabetes contract it more. (I had suffered from EDs when I was younger and have a history of diabetes that runs in my family, which is where I believe my causes came from.)

I suffered 9 months with this condition without proper treatment, in which my symptoms were prolonged, got worse, and almost passed, all because if ONE doctor.

While I got better for a time, I’m still battling with this condition, as well as other conditions that came along.

~~~~~~~~~

When those in the BIPOC community tell you we don’t trust white people, especially doctors, it’s because we’ve been shown time and time again the complete disregard for our care and safety.

Use your allyship for good and protect us.

I would like to thank my friends for your help, but especially with my partners and my friend @metalheadsforblacklivesmatter . They helped me so much through those 9 months, and even now continue to help and support me. I love you guys so so much. 🩵🩵🩵

[nvcr]

Lots of surgery questions

I know that it's dependent on doctor and whatnot but I have a few questions just to get a general idea

1. How long did it take insurance to approve your surgery after sending in your therapist letter?

2. How soon after approval did your surgery get scheduled? How far out?

I have my consults on the 6th (telehealth) and 7th (in person), and I'm hoping to get scheduled before July, but I'm worried my insurance just won't process fast enough to get it there. The hospital said they're currently scheduling out to late May/early June, so I feel I have a chance, but just concerned something may happen that'll delay it

I already have my therapist letter, I just haven't sent it in yet because my insurance plan doesn't start until April 1st.

Just trying to see if you all think it will be possible for me to get my date scheduled before July

Other questions as well:

1. How many post-op appointments did you have? I've heard different things from different people. Some people say one (to get drains removed and everything) and some people say they've had multiple. If you've had multiple, what was each one for?

2. I know there are plenty of essential item lists, but anything you 100% stand by needing to buy before surgery to have for recovery? Any recommendations for a second chest binder? I would like to be able to switch mine out and wash it every once in awhile since I'll be wearing it for about a month or so

3. How soon did you stop taking prescribed pain meds? I have problems with prescription pain meds (they make me really emotional) and I was wondering if it'd be possible to stop taking them just a few days out

4. Any overall tips? I'm just super nervous! Surgery is one of those things that I've only had once, and my first time was terrifying. I'm definitely not as scared this time around, but just want to be prepared for anything. How did you all feel after waking up? Etc etc

6. To trans people in TN (since that's where my surgery will be), do you think it'll be risky going out in public? Should I just go to the hospital and straight home? (I live in a border state). I'm just scared with the new bills, so being put and about in TN is something I'm anxious about. What do you recommend?

7. How did your recovery look? Like, how many days before getting drains removed, how long until you could shower, could take off your compression binder, etc. Again, I know it's different for everybody, but I want a general timeliness

Sorry for So Many Questions, I just want to be prepared as possible. Feel free to ignore this or just answer a few questions, no need to answer them all! Just whatever you can and are willing to answer

Thank you guys So So So much!!!

[shinra-makonoid]

I had the appointment with the anaesthetic, he was an intern and he was so so cute. Sadly he won't be the one doing the surgery so I was big sad. He told me the objective is 0 pain 0 nausea for the duration of the stay. He explained everything to me in a sweet and simple way.

I was fully thinking I'd have to pay the hospital beforehand but everyone told me I wouldn't have to, and google tells me I have 30 days to pay them after the surgery so basically legally I'll be getting the life insurance from my grandmother before I actually have to pay anything for the hospital. The surgeon is 400 euros for 6 months so that's not really expensive.

I'm not even anxious about it anymore, I trust like they're going to take good care of me, which is wild to me. I asked the anaesthetic what meds he'd use so I have the list, I already knew about propofol and curare though. He told me the hospital didn't have the antianxiety I use, so I'll have to try xanax and maybe a sleeping pill. He told me they were very into the idea of taking meds only if needed and I subscribe to that 100%.

Also I wondered about something, am I the only one not being sure how to respond to "do you have heart/breathing issues?" "Do you bleed normally?" Or stuff like that? Like... Not that I know of but? I can't be sure lmao I'm always super hesitant to answer those questions because I don't really know for sure. I feel like anytime it happens people are being weirded out by me not being sure but like??? I'm not a god I can't really know for sure, my body functions without me for a majority so like... Yeah.

[killian-whump]

Obligatory Health Post

Some of you might remember my right ear from such happenings as “What the fuck is this noise in my right ear?” “Why won’t this noise go away?” and, my personal favorite, me likening the noise to this:

At some point, I stopped bitching about it. It didn’t go away, mind you, but I just got sick of talking about it and - I assume - everyone else probably got sick of hearing about it. I did, however, continue seeing doctors and trying to figure out what the fuck was wrong with the damn thing. Well, long story short, my ear is perfectly fine - but I got a CT Scan a few months back that showed, and I quote, “a constellation of abnormalities” inside my motherfucking head.

Chief of which is “severe” venous sinus stenosis - fancy medical words that basically mean the main vein that moves blood (and cerebral spinal fluid) out of my head and into the rest of my body is functioning about as well as JJ Sneed’s knees at this point. The noise I’m hearing is the blood (and CSF) literally having to force its way through the vein.

Allegedly, I can somehow continue being not-dead with this shitty hardware malfunction going on, but it’s causing a back-up of cerebral spinal fluid inside my skull, as it’s not able to drain properly. So my head is, right now, literally full of shit you guys. There’s so much shit in there, and the situation’s been building up for so long, it’s actually changing the shape of my skull. Fascinating.

Pictured Here: a slightly less alarming way to reshape one’s skull.

Aside from remodeling my brain cavity, the fluid also causes headaches and dizziness and nausea and coordination problems and visual disturbances... that eventually lead to blindness. The condition’s called Pseudotumor Cerebri, because the symptoms basically mimic those of a brain tumor. Or, as my sister puts it, “All the fun of a tumor without the cancer.” I mean, I guess.

Thankfully, I only have some headaches and the infernal noise from hell inside my right ear. However, I have an appointment with a new doctor on Friday - who is going to give me some kind of massive eye-and-head exam that’s supposed to take 3-6 fucking hours. He’s gonna tell me how bad the fluid issue is and what I might have to do about it (could be nothing, could be meds, depending mostly on whether or not he thinks I’m in danger of losing my sight). I’m hoping he can determine that through the eye exam and the scans I’ve already had done - otherwise, he might order a spinal tap to measure the pressure on my brain. The only way that’s gonna happen is if he gets me so motherfucking high I have no clue where the fuck I am or what’s going on - which would be like any other day for me, really, aside from the ginormous needle in my fucking back.

The doctor’s also going to tell me what we’re going to do about the stenosis itself. That’s likely going to be “do nothing and keep an eye on it” or “put in a stent” - depending on which route the doctor feels poses less of a stroke risk. If he does nothing, then I’ll probably need to be on meds (reportedly unpleasant ones, yay) to control the fluid in my head and keep getting CT scans to keep an eye on the stenosis’s development. If he opts for the stent, it should fix everything all in one quick shot, but it means 24 hours in the ICU and fucking brain surgery. If I need to be higher than a kite to even consider getting a spinal tap, just imagine the kind of carnival of insanity I’m gonna need to survive that.

However, the stent is metal, so maybe I’ll set off metal detectors? Also, I might be able to get away with calling myself a cyborg afterwards. I mean, it’s not a pacemaker or anything, but it’s metal in my body, right? If I can’t be a cyborg I just don’t see the point of any of this at all.

Anyway... Despite my attempts at humor here, I am scared to death. Humor’s just my way of dealing with... Well, everything. The only alternative is not dealing with it at all, which... Well, let’s just say that there’s at least a 50% chance that on the day of whatever procedure I have to get that I’ll just be here posting Colin pics and talking about his butt like nothing’s going on at all - because I’ll be hiding in the fucking coat closet of the medical clinic, praying the wifi signal holds because Colin’s butt is magical and might be the only thing that can save me 😭

Pictured Here: Magical Leather-Clad Butt of Wonder

So that’s your update! Friday’s the day. Please send me good vibes, positivity, prayers, Colin shower GIFs, butts, or whatever it is you feel comfortable doing. I could really use the help. I’m (probably not really, but maybe) dying here 😭

[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.

[iamthecomet]

Hoot!

(Finally replying, heh)

I honestly really hope that the meds will work too. I‘ll keep on taking the same ones I take now and take the other ones in addition, but they actually benefit? each other (as in, both probably will work better when taken together)

I‘ll most likely start tomorrow, but it will take 4-6 weeks for them to actually make something change. And also my symptoms of like dizziness and headaches will likely get worse at the beginning (this will get better over time tho)

They can also make you feel more suicidal in the beginning (which is because they make you more aware, including more aware of problems) but that also gets better after those 4-6 weeks when the actual effects set in (the new one is a kind of antidepressant)

So like, I’m pretty nervous about that

Yeah, going outside is pretty good but also hella hard to do. Sometimes my friends manage to drag me along, which I very much appreciate (they also need to go slower when we go somewhere by bike because of me, but they do that without ever complaining, for which I’m very thankful).

And you‘re so right. In the past, I’ve sometimes not treated them very kindly because of my insecurities and how I’m scared of being a burden, which is also why I isolate myself a lot, but whenever I feel a little less bad they always welcome me with open arms (they‘re also the reason I can watch movies/series, because 2 of them are so aware of my phobias that they will make me feel safe whenever something triggering happens. It’s literally so damn good, because when I’m watching with them, I can actually enjoy watching without being constantly scared that something triggering could possibly happen)

Also seriously, the way one of them immediately offers her hand for me to squeeze while simultaneously covering my eyes is just the sweetest thing ever

But like, there are other good news I think!

I‘ve been thinking about using a cane for at least months now. I sometimes feel very dizzy, to the point of pre-syncope (even though I never actually fainted before) and especially in the past few days, I feel even more unstable when walking than I usually do. I‘m very scared to go outside, especially on my own and just really don‘t feel safe. And especially during disability pride month, people where explaining what mobility aids can be helpful for what, and dizziness was often mentioned for canes.

And I honestly really think that it would help me a lot, and give me a sense of standing/walking more safely.

I always wanted to wait because I was/am scared that I’m just telling myself all that because I want a cane to get attention.

But my dear ex roommate (and one of the sweetest people alive) actually was like “well if you‘d benefit from it, who cares even if would be partly for attention? What about attention is so bad?“

And I think that they are very right. (They also added that canes do look cool as hell and they are also very right about that. I cannot wait to put stickers all over mine if I actually get one)

So on the next appointment I’ll have with my doctor, I’ll ask her if I can get a prescription for a cane.

Oh god, this got long again. Sorry about that

At least it included a lot of (pretty) positive things I think

At least for me, engaging a lot in fandom content helped me with my post-Ritual depression (as far as it was related to that cause I got regular depression going on as well xD)

But it seems like you‘ve been doing that /pos

~ @owlishanon

Finally digging this out of my drafts SORRY! ♥ I'm so glad things have been looking up! I hope that your meds aren't too hard on you during the adjustment period, and that your side effects are minimal. I'm glad you're friends have been so supportive, and are so good to you. I've probably already said it, but real friends are going to be there for you no matter what--they love all of you (even the not as fun parts) and I'm glad you have some like that. I'm with your ex-roomate on the cane stuff. If it's going to help you, you should do it. Who cares what other people think. If it makes you feel safer, more stable, you shouldn't hesitate to get one. I hope that your conversation with your Dr. about it goes well and you can get one and that it helps! Lots of love to you, I hope things are still going well!

[cakesexuality]

Psychiatrist appointment kept getting rebooked on both our ends and was cutting close to the 6-month mark (when I'd be officially considered discharged if I didn't come back) but it finally happened yesterday

Last time I saw him, he said my main problem was psychosis, which is true and that probably was my biggest problem at that point

This time, he said he doesn't think I have psychosis at all

I asked if we could try a depot, because I'm having issues taking my meds as part of my relapse and a depot would make it a little bit easier

He says he can't do that because I don't have a diagnosis for something an antipsychotic would be used for

I have a diagnosis for something that an antipsychotic would be used for and have had this diagnosis for the last 9 years

I ask why I need a diagnosis of something specific in order to receive a depot

He tells me "I need to tell them why you're taking it"

Who the fuck is "them"?

He wants to increase my Seroquel to 100mg

Even 75mg of Seroquel is too much for me to take on a daily basis and I have to cycle my dose throughout the week between 75mg and 50mg

He wants to change my antidepressant from Wellbutrin to Prozac

I give him the heads-up that Wellbutrin doesn't do anything for my MDD but works for my ADHD, so taking me off it would leave my ADHD unmedicated, but this doesn't seem to bother him

I've taken other antidepressants similar to Prozac in the past and they didn't do anything for my anxiety, sometimes made my anxiety worse, usually didn't do anything for my depression, and were not worth the stuff that would happen to me like hair loss, hallucinations, rapid mood swings, dissociation, etc., but this is fine to him

He wants to give me the liquid form of Prozac because it's easier to control the dose, but oral suspensions have been the hardest medications for me to take right now and I'd fare better with a pill

I just finished taking 28 doses of a liquid medication in 7 days, please give me time to breathe before starting a new one

He wants to change my antidepressant because I'm in a bit of a relapse and one of the potential side effects of Wellbutrin is reduced appetite

One of the potential side effects of Prozac is reduced appetite

The increased hunger caused by my Seroquel outweighs any possible reduced hunger from my Wellbutrin

He says my main issue right now is anxiety and that's another reason why he wants me on Prozac

I ask him what had led him to say anxiety is my main problem so I can clear up any possible misunderstandings, since I don't feel like that's my main issue at the moment and I don't know what I've said or done to make him believe that

He says "Because that's my opinion"

I ask if it's my body language, my tone of voice, my word choices, etc. leading him to that conclusion

He says "None of those things"

I ask, if not one of the things I listed, what else could it be?

He says "Because that's the impression I get"

I ask why he gets that impression

He says "I just do"

I can see that he apparently gives prescriptions based on vibes rather than actual symptoms

After going around in that conversational loop at least 5 times, I say "Okay" and disconnect the video call

I talk to a social worker at CMHA who doesn't know what the fuck he's talking about when he says I need a diagnosis to get a depot and she convinces me to reconsider whether I want to give up on this doctor already

I call his receptionist the next day and she says that he meant he would need to tell my diagnosis to the drug manufacturer

The receptionist also says I'm already officially discharged less than 24 hours after speaking to him, so I guess the decision of whether to go back has already been made for me

I talk to a nurse at CMHA, a pharmacist at my pharmacy, and a receptionist at my GP's office, and none of them know why he would have to tell my diagnosis to the manufacturer

[gwydionmisha]

Personal: New GenZ Friend Arrived Safe

I had to stay up for a Thursday morning appointment to meet my new Doctor.  He seems nice and we vibe okay so far.  We just focused on blood work today.  I'm going to go back once a month for the next three months to focus on one area each since my case file is basically the collected works of Thomas Aquinas in size and even with my beloved previous GP's help, no one can get up to speed all at once.  It turned out we'd missed a test a couple of weeks ago and I needed an extra vial taken today.  All of this took the whole morning for obvious reasons.

Which would have been fine except a very nice addition to the friemnd group was arriving today and the ride to go pick them up fell through.  Techie Millenial called me and rightly so, so we went to pick them up.  This is the person who visted around last Diwali and fitted in right away.  Seriously, they are a delight and weren't safe in their state any more.  Trans Overground railroad got them out and they have an apartment with a roomate I am told is cool lined up and are staying with Tecie and Art millenial for a week until they can move into new the new digs.

The problem is the pain situation has been escalating to the point where Extreme pain wakes me and then i have to figure out how to roll over with only 2/3rds of my body working and the "I just got run over by a bus" level pain involved in shifting positions, which does not make for restful sleep.  This is the kind of pain able bodied people would be in the hospital for, but here I am at home trying to shuffle around and somehow feed myself and beasts.  (hospital would be no good.  I don't want a drug seeking note in my file and the kind of medication this would require would make me trip balls.  It's a big risk, because people in my family with this reaction to opiods also respond this way to anti-psychotics.  I've never tried them, but you get someone with extreme paranoia, another side effect of the opiod reaction, who is having an obvious psychotic break, they are apt to give them anti-psychotics, which is a viscious circle.  It was lucky they summoned me to the east Coast my Mother's second to last time in the ICU or they would have shipped her to a psch ward instead of tapering her meds, at which point she was fine except for the whole lungs failing thing.  New doctor wouldn't know to stop them and they might not listen to Techie Millenial who is Officially in Charge if I can't speak for myself.  Note to self: Next month explain my weird inherited response to opiods to New Doctor).  Before you start suggesting things, trust me, I've tried all the mitigation I can reasonably do.  What I really need is accupuncture which I can't afford.  Instead i just have to endure thisand keep chipping away until i'm back to my usual pain scale 6-7 which is a functional level of pain.  This in not.

Bonus points?  My right front break started to grind while I was taking Techie and new GenZ back to their place.  I have no money except the gas money they slipped me and an emergancy tener for meds.  (I have my food OTC left and no EBT even.)  I've scheduled with honest Mechanic for May 1st.  I can already see next month's bill money draining away, but that is a next month problem.  Sigh.

Today would have been a great day to order delivery food.  Instead I stood weeping in the kitchen because there was an electrical issue and the air fryer wouldn't work.  (Squirrel solved it).

I am so glad we got GenZ out of that hell state though. They never knew how tense and constantly braced for attack they were until they came here.  I know that feeling.  My whole body used to relax whenever I crossed the Rockies and the PNW has felt like home since I first stepped off the train all those decade ago.

[jedi-bird]

Vent post ahead because I need to get this out before I can start my relaxation exercises and meditation.

I've been going with my mother in law to get medical appointments lately, on her request. She doesn't remember a lot of what the doctors say and then because she doesn't like "western medicine" (her words) she will purposefully misinterpreted what they say. Her son and I take notes and email and text them to her and her other son so there is no chance of her lying to him about what was said (we don't live with her but he does).

It's been a constant fight and struggle and it's beyond frustrating.

She has long covid and never got treatment during her initial illness because of an incompetent doctor. Five months ago, we managed to convince her to join a treatment program. Four months ago, they put her on a medication that's an antiviral but also a dementia medication (she has a family history of severe dementia in every family member). The difference was immediate. She could hold a full conversation again. She had energy and could get through a day without crashing. She was mostly remembering things; this was always a struggle but having her back to where she was before covid hit is great.

Then, she got it into her head that the medication was making her sick so she stopped it. And it was very noticeable. Turns out, it wasn't that medication. It was the stupid supplements that she was taking without telling anyone. Her other son took it away, her doctor's all told her not to take it again, she started a high blood pressure medication (very much needed, her numbers were in the dangerous zone), and restarted the other medication. She got much better again and we thought things were fine.

She apparently had hid some of those supplements and retook them again orders. They have now (hopefully) been purged again.

She had a blood test done. Her liver numbers are twice the maximum level and she's freaking out. She does not have hepatitis per the results and it's very likely it's just family genetics (husband has a fatty liver as well) and diet. She's insisting that it's the new medications and that she needs to stop them immediately.

Her doctor told her to keep taking them. We've told her to keep taking them. We've pointed out that she hadn't had a blood test in years and neither of these medications affect the liver. That fatty liver syndrome doesn't come about in just a few months unless something else is wrong. Her doctor isn't worried and doesn't want her to move her appointment up. We're literally fighting with her to keep taking her medications.

I'm so fucking tired and stressed out right now. I know I can't make her do what they tell her so I've basically told her that if she wants to ignore medical advice then I was done helping. There's no point in me giving to multiple days a week for her appointments if she's going to ignore everything they say.

I'm about to be the bad guy and I don't think I fucking care anymore. She's upset that I texted her back at 6:30 this morning but she's the one that sent the text in a panic. She wanted to go back to sleep after the initial text and apparently my actually responding upset her. Especially since I didn't agree with her stopping the meds. We put a rule in place that she can only stop things if she gets it in email from her doctor, not that she'll actually do that.

I want to go punch something but also I can feel my blood pressure rising so I'm going to go do my relaxation exercises and try to calm down.

[alienvauvva]

Read about atypical cardiac arrest /vascular disease symptoms and wow. Whose legs are fucking deceased after walking less than 1,5km??? I have ear pain with a pulsating rhythm and ear ringing also Jesus Christ the stabbing pain I feel in my back/chest area sometimes when I move my arm... Ughhhh... These might be explained by some other things too but also the article just kept mentioning how people just brush these symptoms off (there were many more and some rare diseases mentioned with their own set of niche symptoms [that don't seem like they might be cardiac]) and think of as the run of the mill pains or just something normal acting up.

Like ughhg I have a retainer and the pains of not having it were as horrible as these that I interpret as the healing pains and the jaw affects the ear and the balance sense. It's sucking the life out of me. But I have the leg symptoms !!!! Might as well be a fucking plantar fasciitis or whatever it was... But I don't feel the pain exactly where the point should be but they mentioned it as a side effect that the pain resides in the outer foot.

Ugh I don't have the knowledge of what to do like do I take these as the retainer doing its job and moving my jaw slowly to the right place and having the retainer out for the day and just sleeping with it is too little at this point and I need the new smaller retainer I can use at the day... Lord I hated taking those pressure point biting tests I almost threw up from those and not the mold making. I am disgusted. I would want the slimmer smaller retainer.. .but I immediately feel agony bc I have to use the public health care of course and it should've been scheduled like 4-6 months ago so that I would have some relief soon. I have eaten pain meds everyday now for more than a week bc I had the spiciest fucking menstrual pain and these migraines.

I have so many things to schedule and find out but it just doesn't help knowing it I completely get paralyzed from the information I should know for the appointment and scheduling it. Like yes they ask questions and I should be able to answer so the check up might go smoother but it's just pain I won't remember all the shitty nitty little things that should be looked up. Like my molars are really sharp? And I'm worried about the bruxism. And the retainer. I should exercise more all these muscles that's for sure.

Is it ADHD symptom that I don't remember all my symptoms and I usually feel like every little thing is just normal it will go away it's not something to focus on. And then it will get worse. And I keep the loop until it's so fucking bad. Idk maybe it's trauma response.

[lpfreakification]

My age has caught up

Im 30.

I've turned 30 last month but was super busy with school that I didn't have the time to process it.

Having this free time this week b4 I plan out what I wanna do in July, I think im overwhelmed with options.

Reading this BL in the past hour doesn't help with my emotions. They make them go haywire. God, boys are cute 😭

My timing is terrible when it comes to dating. I think it was 2 or 3 years ago now that I read a BL manga called Love Doctor that got me into a spiral of emotions + an overwhelming longing for a boyfriend. I did try. He was alright. I could do better. Then school started.

This feels selfish of me wanting a boyfriend just to recreate fluffy yaoi moments. That's a delusional way of thinking, Perla! *whines*

From experience, I do have ideas:

Step 1: Go to a place of frequent visits (such as internet, Tumblr, school, computer lab, library, lobby, coffee place, restaurant, workplace???)

Step 2: Do my doodle thing until someone walks up to you + compliments them

Step 3: intros

Step 4: talk about work/hobbies

Step 5: Repeat steps 1 - 4

Step 6: Exchange contact info once u get comfortable/confident, when your face lights up when the other person arrives, or can't stop thinking about them.

... + idk. I never gotten as far as that 😅 I remember one piece of advice I was told that I struggle with, + suck at: follow-up/following up. Why does it have to take so much energy 😫

I feel troubled. I know that I don't really like to give, just take. Eventually, I will have to learn to give more often. I constantly think to myself that I'm gonna give them something in return for what they've given me. In the end, I can never physically execute those thoughts, and I end up wallowing in bed in guilt.

Either:

- depending on future boyfriend, I'd do anything

- stay the same

- feels the same way + we can both agree not to spend on each other but for ourselves.

...

Man, what am I doing with my life this week, wasting away in bed? I guess I'm just being lonely as hell since the wedding two weeks ago. Dammit, the cute aggression is stirring up.

Also, aren't I supposed to be taking a break after two months of animation grinding, too?

I... don't have a good work-life balance. I've explained this so many times, so I'll skip it. Hmmm, little bit of things here, little bit of things there, + a few days off for myself to do absolutely, positively nothing.

I do have an ideal routine that worked out so perfectly when I had an internship in 2020:

I did get the right idea of starting animation work at 8 am. After my sister's wedding, I started taking my meds earlier at 5:20 in the morning. Huh, the 9pm hour is still an accurate time for chilling. I have been falling asleep earlier than usual nowadays, b4 11pm.

...

Since I'm here, let's organize my ideas.

- KH:DDD

- Kickboxing

- School stuff

- Improving on some animations, need a specific list for that

- Haircut

Those are my main points. There's bound to be more little things in between that may come along the way. Like, my psychiatrist appointment tomorrow morning, the local annual 4th of July Parade, + Traverse City, Michigan in August (more details when the date draws near).

...

I'm feeling a bit better now that I got these thoughts out of my system :)

Imma go grab a cheesecake from the kitchen X)

Yep!

[stardustinmyhands]

6/5/24

I still won’t say what my jealousy is ok. I told a few people. I don’t need to reveal it at all, and I feel a little guilty about it.

Today I’m just sore, no pain. Taking meds to help it. My stomach hurts a little bit. And somehow I got chub rub on my thigh well I slept, baby powder is helping.

Our car completely died on Sunday. We are gonna go look at cars on Saturday after work. Wish us luck. 🍀

I have to appointments this week, luckily I get free rides through my insurance to medical appointments. So I set those up. Tomorrow is my infusion and Friday I see a cardiologist.

I’ve been staying on top of taking my medicines as I should. So I don’t emotionally spiral again like I did a few weeks ago. It didn’t it like it, I felt so out of control. Like I just cried and felt so helpless. I like that I can control most of my emotions.

I take my Adderall everyday now cause it helps me human. I have its molecule tattooed on me. I wanna add more molecules to it of the medications I take to regulate myself. I’m thankful I found medicine that works beautifully for me.

All cause about 20 plus years ago psychiatrists said let’s try a seizure medication with an antipsychotic medicine. I was put on lamictal and Abilify. Today I’m on triliptal and Abilify, trileptal is a seizure medicine so that combo works amazing for me.

I didn’t get put on adderall till I was in my 30’s. It was a fucking game changer, even my gf cried at improvement she saw in me. I was on several other stimulants before I got put on adderall. I even tried Ritalin, which helped some but not nearly as much as adderall improves my life. My doctor even gives a big dose. I’m on 50 mgs a day. He said the highest dose gives out is 60 a day.

I felt jealousy over not having babies. I told my boyfriend there is a part of me who still wants to get pregnant. And I said I know it would be selfish and dangerous to me and the baby. He said yes it would. I also said I wouldn’t even attempt to get pregnant without his ok. That would also be getting my mirena out, which I wouldn’t without his ok either. For two years I had unprotected sex with my donor, no baby. I wrote in my journal I told the universe since I was a kid, I wanted to be a mom. I mean I was raised that everything happens for a reason, my name literally means that I was told that my whole life. I guess kids were not in my life book this life anyway.

Look how fucking that smile is. I love her so much. I’m 43 and proud to be a Little Monster. One of my managers said when he first met me he wonder what my sexuality was, then he saw my Lady Gaga necklace and knew then. I love that story. I felt safe enough to tell him I was bisexual and polyamorous, and that I have a gf and boyfriend. Where I live now is very Mormon-ville, so I was weary to reveal who I really am till I trusted a few people.

I put cinnamon in my coffee and I’m drinking it with a chocolate protein shake. It’s so good.

Tomorrow is my IVIG infusion. This hospital doesn’t use the bottles they come in, when you arrive the let pharmacy know and the pharmacy put it into a little bag. So I get no bubbles. 🫧 I liked seeing the bubbles. My port Tony makes my infusions so much easier. I have an endoscopy next Friday, that will make it easier too. No iv’s for this girl. I’m getting to infusion early tomorrow so I can eat breakfast at the cafeteria and find the infusion center. It’s like on the second floor in the middle of the hospital. At the Phoenix hospital it was like 100 feet from the entrance, which was right by the parking garage, with covered parking.

I will watch the Chromatica Ball tomorrow while getting my infusion. I watch it at least once a day now. I also have to search for car dealerships, and call and make an appointment with my rheumatologist, I don’t have a follow up yet, and it’s a several month wait to get into him.

I rambled on a lot today. Ok I’m done for today. I have to finish my 2nd coffee and finish cleaning the kitchen.

[help-help-i-need-an-adult]

But damn if that isn’t realistic.

My biological mom used to give me her prescribed (for her) oxycodone so I wouldn’t miss school for my periods but never thought to take me to the doctor for that and find a reasonable solution. Without those illegal to give me pain meds, I wouldn’t have been able to get out of bed. There was the occasional time that she just let me miss school because I couldn’t get out of bed and she didn’t have the drugs to spare.

Teachers and doctors and parents and friends alike were telling me to walk it off. “Cramps suck, but they aren’t that bad. Up you go, you lazy bitch.”

My high school principal had to tell my mom to get me on birth control so my periods would at least be more regular so I could maybe function when I was menstruating. She didn’t know about the illegal drugging. All she knew is I’d show up to school and be ready to fist fight anyone who so much as looked at me wrong. (This was a several hour argument because mom didn’t want to “give me permission to have sex”.) Having a period every month instead of every 6 did help a bit but I was still bed ridden for the first day at least. I was less of a bitch too. That worked for a few years until that birth control made my blood pressure too high. Then I got switched to one that made me not menstruate all together. But it did cause other problems.

I finally at almost 30 got a new OBGYN who talked to me for like 10 minutes in my first appointment and said “sounds to me like you need a hysterectomy.” The one before that just told me “we don’t do hysterectomies unless it’s medically necessary” and then never looked into if it was medically necessary. She did tie my tubes for me, but that didn’t solve the “I’m on a birth control pill that’s causing me problems” problem. I still took the birth control until after my hysterectomy. Now I get period symptoms once a month (because I still have ovaries if nothing else) but it’s not nearly as bad as it used to be. Ibuprofen actually fucking works now.

Padme being told to walk it off is too damn relatable.

I can not fucking imagine how much worse that would be if I had to wear those fucking outfits. Bras and heels and choir uniforms were bad enough.

padme body horror is supreme bc when you think about it, her very existence requires constant agony. in real life that red invasion gown took several weeks to build. and the costumes were so uncomfortable that kiera knightly, who was sabe for like 2 seconds, cried every night while filming. the main way natalie portman describes her prequels costumes is “painful” . and sure “beautiful” usually follows but dude. imagine being 14 and in constant pain bc your job requires you be pretty as possible while defending your planet from fucking invasion. i can’t imagine how estranged i’d feel from my own body and sense of self in that moment. you can take that (already extreme) rigor over the body to all kinds of violent ends. possession. some sort of creature. self-mutilation. fic writes itself tbh!

[red-hibiscus]

My experience getting testosterone pellets for those interested

This was my 2nd time, but my first time was a year ago so I don't remember that clearly.

They insert the pellets around the same area you'd inject testosterone (upper/outer corner of your ass cheek). I don't know what the average amount of pellets is, but my doc always does 10 pellets. I've seen them. They're pretty small. They put some local anesthesia first. That hurt way more than expected and it was a long injection. My doctor took his time and it was not fun. After that it gets numb really quick. You just feel pressure and the occasional pinch. They tape down some medical paper or whatever around the site to keep things safe and sterile.

Most of the time I was scrolling through instagram and tumblr as I laid on my side. I was as chill as it could be. I occasionally chatted with the doc and the nurse. I fainted this time (didn't the first) because I felt a bit more than I wanted to. Not super painful, but more than I wanted to feel. I do have a bit of a history of fainting for various non-dangerous reasons in all kinds of situations so I suspect I'm more susceptible than most. It was fine though. They were almost done and once they gave me water and made sure I was ok they inserted the final two pellets. I don't think this is too much of a concern. Probably about as common as people fainting when they get blood drawn.

Once everything was done they bandaged me up (no stiches, just bandages), had me laying there to recover for a bit. From fainting, not for the procedure. After like 3 minutes I got up and made my appointment for the blood tests in 2 months. The next time I would need to get the following round of pellets would depend on how my hormones are doing then. Usually it's every 3-6 months.

I would say I was in and out of the office in about 30 minutes. It was relatively quick.

Recovery:

The larger bandage stays on for a few days (didn't specify but I'm going for around 3-4). Has to stay dry for at least the rest of surgery day. The steri-strips stay on until they fall off naturally.

I would say it's a bit more painful than those vaccines that give you a major sore arm so whenever you move you feel it. Mostly dull pain with the occasional sharp pain, but nothing I would desperately need pain meds for. It's manageable and could be ignored with the proper distraction. It's annoying though due to it's placement. Sitting and laying down is obviously weird. But walking sometimes is annoying. Very uncomfortable.

In conclusion:

It's a bitch to get done bc most doctors don't offer it and insurance takes a while to approve. The surgery itself is pretty simple and quick. Don't let my fainting scare you off. I almost fell asleep the first time, and even this time was actually pretty chill. I'm just a wimp. The worst is the anesthesia injection. The recovery is fast, but annoying. You forget about it after a week from what I remember. It's satisfying to not have to worry about gel or injections for months.