#so I have to get one of those GP appointments I can't get
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Update!
Hey everyone, just wanted to check in with you. I hope you all doing well!
Right now, I am feeling good about getting chapter 3 out by 4/30. It's a crunch for sure, but barring any disasters in the work itself or my personal life, I feel like it is doable. My aim is to get it to a point where it is release-worthy but will still need fine tuning after the fact. I generally like to edit things a couple times at least and have it play-tested, but I won't have time for all that. But, this is a work in progress, and I can always make improvements as I go. There are also a couple segments that I did not have time to add, but they're not pivotal to the story. I will add them if I find the time before the 30th (sorry to those who wanted to make a tasty cake for someone).
So far, I have gone through chapters 1 and 2 again and made some corrections to typos and grammar. I added a white hair option with some flavor text, and some other flavor text for purple eyes. The option to have your MC's hair turn grey (streaked or fully grey) from stress/illness was added, but I did not do it in the way I needed to, so if I have time, I'm going to fix that before release. I also updated some of the variable values of certain choices. A name bank was added for anyone who might struggle to come up with a name for their MC. I made all but one of them correspond to the marks. There's a wild card in there for the adventurous, lol. The codex was also updated.
Today, I am editing chapter 3. My very gracious boss encouraged me to take the day off, and I'm feeling pretty good, so I'm using this as an opportunity to get some serious work done.
If you're curious and don't mind my rambling about my life, you can read about my ordeal below!
I am feeling much better. I had a couple rough days in the past week, but mostly brought on by medication my dentist wanted me to take to stave off possible infection in a broken tooth. I had a less-than-stellar reaction to it, and it gave me insomnia and anxiety. Simply fantastic.
But, I had the root canal yesterday (got lucky and they had a cancelation so I was able to go in 5 days early). I am happy to report it was not bad at all. In fact, it may have been the easiest dental procedure aside from cleanings that I've ever had, lol. I was in and out within half an hour, and the endodontist numbed the fuck out of my mouth. The biggest pain was the drive there and back since I live so far away.
I chilled the whole day and took a glorious 2 hour nap, and have been sore but totally good. I even watched one of my favorite comfort-animes, Natsume Yuujinchou. If you are ever feeling poorly and down in the dumps or just need to relax, it is cute, a bit funny, and lighthearted - so I highly recommend it. So, all in all, I feel recharged and more than ready to see chapter 3 with fresh eyes!
Thank you to everyone who sent me encouraging messaging about the root canal. It really truly helped me show up for that appointment without feeling completely vulnerable. I was still anxious, because that is just what my brain do - I can't even see my GP without my hands shaking, lol. But, going into it knowing what your experiences have been helped so much.
Anyway, sorry for prattling! I'm going to get back to it now! ^_^
#god cursed if#asks#twine if#if wip#twine wip#interactive novel#if game#interactive fiction#gc if character development#gc if update
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dumped by my therapist for being too mentally ill 🙃
#personal#vent#tw suicide#told her I'm having constant suicidal thoughts#that are incredibly distressing#and a pervading sense of hopelessness#'sorry I can't help you figure out WHY you're depressed 😕'#like first of all did you even listen to what I'm saying#I find it bleakly hilarious that the one time I'm upfront about my suicidal feelings#she didn't ask aaaaaaanyyyyy safeguarding questions lmao#and blamed me for being difficult and rejecting her help#because I said I can't get a GP appointment and I can't use crisis lines#because my voice literally shuts down and I can't speak when I'm very distressed#(which she's witnessed first hand in our sessions)#so I have to get one of those GP appointments I can't get#and start the referral process over#hoping that this time they don't send me to CBT#or I could just save myself the trouble and jump off a bridge
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Learned recently that not only can tense neck and shoulder muscles cause headaches but the other way around works too! So if you have a headache! That can make your neck tense up! Except that will then of course loop around to giving you a headache! On top of your already existing headache!
I did not learn this in a pleasant way
#this is not fun and i don't enjoy this#like... usually i get tense muscles from not stretching enough after training#and the usual stuff like... sitting badly#but i know how to deal with those and some stretches + warmth + ibu + a good night's sleep make them go away usually#this one? I've had this one for days#it is punching through the ibu#anyway. got training tomorrow#we have a physiotherapist on the team maybe she'll fix my muscles after training if i ask nicely#(the original headache probably comes from the lingering but mild ear infection my gp refuses to properly treat)#(he sent me to the ear specialist but guess how easily or quickly you get appointments there)#(in this town like? 4 are on holiday? one i reached but doesn't accept new patients and one has the earliest slots in july)#(and bc it's so mild I'd probably get send away if i went to the emergency one)#(so.... yeah)#(gonna call two of the holiday ones on monday they'll be back then)#(and if that doesn't work guess I'll... idk. go to the emergency one and refuse to leave i guess)#(my gp thinks it doesn't need antibiotics and a proper cleaning of the ear would do it but he can't do it bc he doesn't have the equipment)#(i would simply like all the lymphnodes in my head to stop being swollen)#(did not know you had lymphnodes on the back of your head)#(but yes you do)
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RL Story
CW: Pregnancy, addiction
N. & I were in that drug clinic at the hospital, where I’m going to deliver. I had my usual prenatal check-up. I also asked the doctor for our babies sex. And yea, I was right! It's a BOY!!! 🩵Yeyy, I was so happy! I couldn’t wait for our baby to be born. And Nico was happy too. He was so excited. This time we could see our Baby really well on the screen. I saw his tiny hands, feet, his head and he also showed us his backside. He just turned around during the exam. Nico said our son looks like an Alien, because he had such a big head, but that’s normal, the doctor explained. And everything else was fine too. I was so relieved. I was always so worried about our baby's development. Those damn pills, yk? That’s exactly why I had an appointment at the drug clinic that day too, that was in the same building as the hospital. (A huge hospital.)
On my first visit at this hospital, 5 months ago, they told us what my treatment here will look like. As you already know, I didn’t like it! But I had no choice. I did this for my baby. Because IF my baby is affected by that Neonatal abstinence syndrome (NAS), he is in the best hands here. Her are the pros, so.... I just had to deliver at this hospital. (I’ve explained it all before and I don’t want to do it again.)
However, a doctor called me into his office/examination room, after I took a drug test....
Doc: Well! So far everything is fine. And after delivery, you have to come here once a week to get your pills.
Me: Yes, I’m aware of that. But how long do I have to do this treatment? Actually, I already have a doctor. Also I wanna quit those pills.
Doc: Before we talk about quitting, there are a few other things to deal with. Believe me, you don’t want to go through rehab after delivery. You will need good nerves! Heroin addicts never really quit anyway. And as for the duration of the treatment, we usually plan to accompany you and your baby here for a year. If everything goes well, you can switch back to your GP earlier.
Me: I have nothing against being treated here, I just don’t understand why a social worker has to accompany me? I mean those home visits. It's a invasion of my privacy. 😒
Doc: I’m not a social worker, I’m just taking care of your substitution treatment. And frankly, I don’t have time to argue with someone like you. My job is your addiction!
Nico: Your job doc, is to help and answer questions all day long.
Me: N.!! 🤦♀️...😬
Nico: What?🤷♂️😠 .. We're off the beaten path here. It’s unreasonable to come here with a little baby once a week just to get your pills. Besides, parking in this damn area is almost impossible or costs over 30 euros. I have to drive all the way across town to get to that hospital. How are you going to do this on your own? With a baby? I won’t always be there. One of us has to work. Abroad! But heey... maybe that social worker can help you and even pay all the tickets you need just to get here. At this... wonderful place.
Doc: Well-
Me: Thanks! Until next time, doc! 😬
We got up, heading for the door....
Nico: Now you're mad at me.
Me: No! Really not! You're right!. This place sucks! I’m sorry you have to come here because of me. But.... that’s the way it is N.🤷♀��.. You can’t talk to these doctors like this. Maybe our baby will need their help? That's why we're here.
Nico: This fucking doc can't help our baby. This guy can’t do anything! Except warm up the office chair with his lazy ass for the real boss of this.... damn institution. This wasn't even his office.
Me: Yeah, I think he just represented the doctor the other day. Anyway, once this is over, you can be.... mean to them! 😉I wouldn't mind.
This hospital is gonna drive me to hell!! 😒 Anyway! We went to my parents after that. I wanted to talk to my mom. I told her I was moving in with Nico.
My mom already knew. Nico’s mom called her and she also invited us all, my parents & me, to..... talk. 🤨 And Ana also talked to Nico & me. It was about Philip. Yep! Ana has seen Philip a couple of times during the summer. However, Ana has agreed to help Philip in court to get custody of Annabelle back. And she also needed Nico's and my help for this. So we’ll talk to Philip and help him of course. But what really was going on between Ana & Philip??? I didn't understand yet. 🧐
Also, I met Daniel. I was on my way home after work. This meeting was purely coincidental! It was not agreed between us.
The more shocked I was when I saw Daniel with another girl. I was..........just crying. 🤦♀️💔💔💔And since I’m such a jinx, he saw me too. 😖But the worst thing was........... I’m gonna do something unforgivable. 😢
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Just read your latest post and I am so sorry that you’re going through this. I can’t imagine what sheer hell it must be. Sorry if this is overstepping, but is there a way to go through a private practise to get what you need? I am sure I am not alone when I say I would be more than than happy to contribute to any crowdfunding effort if the cost is an issue - I mean that with complete sincerity and concern for your wellbeing.
i have a lot of messages suggesting going private but the trouble is that the only usual treatment for this kind of sleep disorder is medication (and usually, quite a lot of it). even if i can afford or save the cost of the initial private appointments, it would leave me stuck paying private prices for medication too, because most gp's wont be able to accept private prescriptions. this happened when i got my autism diagnosis- i went private and then was told no support or referrals were available to me, partly because they didn't really exist, but also because the nhs won't often accept private diagnoses- you can't be referred between the two. you have to be reassessed under the nhs. i could go private for initial answers and potentially be seen faster, but i'd have to rejoin the same waiting list and then be reassessed again to receive treatment and long-term care. so its not really an answer. in my family, the phrase is "don't go private unless you can afford to stay private."
i think this has changed in some departments (i know a lot of friends who are 50/50 private and nhs for things like adhd assessment, minor surgeries, etc) but for more complex departments like those of sleep, it isn't an option. my gp won't even discuss any kind of temporary treatment until i've seen a sleep specialist because she doesn't believe she has the experience to try and navigate it with me 🥲
(while we're here i'll also mention that you can't simultaneously be on the waitlist for two clinics- had a lot of messages about that too. it doesn't work that way unfortunately. it's one referral. if i want to change list, i'll have to go to my gp and ask her to move my referral).
i appreciate the suggestions and if anyone in the uk has experience in these areas please let me know. im really at my breaking point. idk how i can keep doing this day after day
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Rant about my health and life coming it's alot so only do it if you're interested and also very important TW mention of end of life.
I am going to the hospital again tomorrow.
I had a break down last night. Saying I can't do it anymore.
If it wasn't for my cats, I would end it all.
Being in pain 24/7 drives you crazy.
I've been in survival mode so much that even certain organs don't function the way they should.
For people who maybe don't know. Our instincts come from back in the days where we had to maybe flee from a big animal for example. And when you have to survive, you can't get tired, because you need to run. You can't get hungry, cause you need to run. You can't feel happy or anything, because you can only think of survival.
I started to notice my morphine didn't do anything, neither did anything I took after. One day I took morphine, muscle relaxer, sleeping pills, and I felt NOTHING. No pain relief, not feeling high.
I also had my chronic migraines again, my period again. (I take meds for the chronic migraine and have to take the pill for my endometriosis)
Turns out I have gastric paralysis from the situation I'm in. So my meds didn't go in my blood etc, just straight through the body. Which is why nothing worked. I now need medication to to make my stomach work to.. Take my medication..
I have a depression again. I am $uicidal.
I won't hurt myself don't worry, I wouldn't leave my cats. My partner, best friends, my mom are also all suffering from my condition. As in it pains them to see this all and they care.
A condition doesn't only affect the person who feels it. But also the environment.
I went in this procedure with pain on 26th of September, and because it went wrong, I also came out of it with pain.
In total now when it comes to my face, I've been in pain and surviving for 6months now.
I am done. I need either a period that they say okay we'll give it 2 more months and then we really need to take steps, or give me pain relief NOW.
But just hearing '' it can take up to months until the nerves fix themselves, it could be okay '' doesn't cut it. Because sure they can heal in their own time, but I cannot be in pain for all those months? This isn't humane.
And then the doctor of the hospital called this morning after my mom reached out to them saying it can't continue like this. And we said specifically let the doctor call my mom. But then my phone rings, they called me. And I hear
'' - what do you want me to do..''
'' - I think it's important just to get you calm right now. ''
But I can come by tomorrow. With my mom because the issue is I am scared to stand up for myself and will say to quickly '' it's okay''. And it's not. Which is why we wanted them to talk to my mother.
After that call, I called my mom crying that they are pushing these meds on me that have a shit ton of side effects, I already take 7 pills a day (now even 10). And they wanna add more.
I don't wanna become a '' junkie'' depending on the morphine. Because i' m scared I often just sit through the agonizing pain. But if I don't get decent pain relief, I will have to dependant on it. Because if I have to do this for more months.. I am scared I will do something stupid eventually that will be unreturnable.
My best friend told me yesterday '' you have no quality of life. ''
And it's true. And he hates it, and I hate it aswell.
My mom then called to my doctors office (GP) the secretary picked up. She told me afterwards that she was crying to her that it's an emergency to please let her talk to my doctor. And they did. My mom also cried during that conversation. And my doctor agreed, it's going to far, someone needs to help. So he moved heaven and earth to say it like that and got me an appointment with another neurologist in another hospital, the 15th of January. It normally takes months. But he made it happen. And I swear.. This man.. Saved my life more times then he knows.
I am very nervous for tomorrow tho and if they will do something or just tell me again '' sorry it happened I wish I could do something but most likely after months it will heal. '' I feel rage, cause it's easy to say that when you aren't feeling it.
Today I also broke down at my chiropractor.
She said I looked pale. I said I had been crying for 2 days now. And when I told her that I felt suicidal, she said '' no no no, if you ever feel like you're gonna do something, you call me okay?? " and I cried and she hugged me. And then sat with me to talk. And she wants to take me out on walks in her private time.
I also have my psychologist tomorrow, she is also fighting to help me. Last time she literally took me in on the weekend in her private time.
I am glad for my support. But I just can't anymore.. The pain is driving me crazy. Which is also scientifically proven. Your brain changes.
So again, the fact that my content has changed so much is because of that.
Because I am not me.. Not anymore.
But hopefully I will find a way. Even just a little.
If you read all this, wow. You're a star. And thank you ❤️
And eventho I prefer not to let people see me this way. It's the truth, it's how bad it is, it's not pretty, I don't sleep, barely eat, don't feel feelings of fun, my skin is bad,.. But it's me. And because I love you guys, most of you are so lovely so it's only fair to share.
Love you.
#My illness#Chronic pain#Trigeminal neuralgia#Operation gone wrong#Facial pain#nerve pain#Chronic illness#My text
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Personal: For Profit Healthcare and Me
So remember how Peacehealth drove all the independent offices in four specialties out of business, thus forcing everyone to use their clinic, then closed those clinics to force everyone to go to their central clinic two counties to the south? And remember how both the Doctors who were running that clinic made a deal to operate out of a clinic a regional medical conglomerate was opening near the hospital? so instead of me spending all day on a sixty mile each way trek for my treatment I was using the last three months of skeleton crew treatment at old clinic which ended the last Thursday in September? Remember how they said we could all follow our doctors there?
Yeah, about that.
I've been dutifully calling ever two weeks to see if they were letting people schedule appointments yet. They sent out a letter saying they were open. I stayed up Tuesday to get in sorted. it was a whole drama because the automated maze to get to the scheduler was as much of a hassle as Peacehealth's and prone to dropping calls, forcing one to start from scratch each time. so that was frustrating and tine consuming.
Apparently they have no access to our health records, so it was a start from scratch situation. Me, mentally: Shit! This is going to be HOURS. Only it wasn't for all the wrong reasons. They take Medicare, but not Medicare Advantage. So if I want it covered I have to lose most of my benefits including having Medicaid pay my big Medicare copay. O.o. Or I can pay for expensive treatments myself as uninsured.
I was upset, but I remembered superstar medical social worker lady personally calling around town to talk dentists into taking medicare dental coverage for me thus opening up my small city so that medicare patients can now get root canals and crowns instead of learning to live without chewing.
So I still thought it was salvageable. Problem is she's gone and the woman replacing her is a busy supervisor who likes to call me two hours into my sleep cycle without warning and then gets angry at me for not being charming. Previous lady asked when was best to call and would schedule calls in advance for a time when I was able to be awake and functional. it is a lot easier for me to be charming when I wasn't just ripped out of REM sleep and am now being interrogated about something.
New lady is a supervisor and super busy with supervisor things and is made of no and is snippy. I can not make her understand that not only is a 120 mile round trip over mountain passes dealing with the traffic mess along the highway in the major metropolitan area where I once got caught in a four hour traffic jam and couldn't get off to pee, is an entire exhausting day for me and that plus a treatment would not only mean i could do anything useful that day, but the next day to. She can't grasp how much pain is involved in long car trips or how much treatments take out of me. She keeps hard selling me on this and then calling me resistant and recalcitrant like I'm the one being unreasonable for considering this basically insurmountable at my level of disability.
She did not fight the in town clinic for me. She did not try to argue them around.
Her, repeating a suggestion she has made over and over since the closing announcement: You should just get your GP to do it.
Me, explaining for at least the third time because we have this conversation every time we talk: I asked my GP last spring like you asked. They can't do it. It can't be administered by a GP. They'd need to hire a specialist and build new facilities for compounding and for special storage of medication.
Her: Well just ask you GP to give you a different treatment.
Me: There are no other treatments. I have medications to manage symptoms. These treatments are the cure. There is only one cure.
Her: You are being recalcitrant!
Me: There is literally only one cure. No new ones have been invented since last February. The cure is working. I'm getting better. i will get worse again with only symptom management.
But she kept arguing with me because I was being stubborn about facts being facts. My GP can't pull an entire brand new treatment regimen out of her ass. She would not let it go or let me go and I was exhausted because it was hours past when I would normally be asleep at this point and also what was the point of her hard selling me on demanding the imaginary alternative treatment or the 120 mile trip. I ended up giving and and saying something like, "I have to go now," which I know is rude, but we spent this entire conversation with her neither listing not understanding and basically acting like I was the asshole here.
So I'm fucked and I'm frustrated and angry. I was literally at the point where I was going to get better really quickly if I kept doing treatments, but if we stop now I'll be back to square one with it all to do again if another clinic opens.
And it's all like this because Obama and Biden didn't have the balls to stick to their universal free healthy care guns and decided to adopt the capitalist give away Republican health plan in pursuit of bipartisan buy in they did not get, which anyone paying attention told them they could not get, which Mitch McConnell vowed they'd never get as part of the project to make Obama a one term president at all costs. They burned all their political capital on a bullshit give away to insurance companies when they could have taken the same or less of a hit just giving up a developed country level health care system. No fucked up website needed for sign ups. No red tape or copays or catch 22 shit like I'm dealing with now.
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i have a neurologist appointment in about a month that i'm quite nervous about due to previously being dismissed/not having my concerns listened to, so gonna post this to ask for some advice on getting Taken Seriously or if anyone knows things about the type of condition i might have about what i should be asking them to do/test.
might be quite long so putting it under a read more, and tw for medical stuff and doctors being dismissive. also i am So So Tired and therefore not able to think very clearly so apologies if i've messed up any of the medical info about conditions i mention and apologise just generally for the rambliness of my writing.
summary of why i'm going:
bunch of disabling symptoms that have continually progressed over the past 5+ years, including: muscle weakness, fatigue, muscle twitches/small spasms, nerve pain, blurry vision, lack of coordination (have this from autism, however has gotten significantly worse recently so might also be related to neuro stuff). first symptoms were difficulty having my arms over my head (like having to take multiple breaks while putting my hair into a ponytail because i couldn't hold my arms over my head for the like.. three minutes to do a ponytail) and blurry vision (that optometrist has said seems like might be due to a systemic disease because of how variable it is) since i was 13, which was seven years ago. i started getting more impairing symptoms when i was 15, and began needing a wheelchair for anything that required standing or walking for more than 10 - 15 minutes. i'm currently 20 and need my wheelchair whenever i leave the house, i can't leave the house or do things around the house often, i can stand for a max of like four minutes and can't hold my hands above my head for more than like 30 seconds to one minute. pretty much all my symptoms get a lot worse with any exertion.
GP thinks i have myasthenia gravis, but the test for acetylcholine receptor antibodies was negative and he doesn't have the ability to do other tests.
the neurologist has already said he thinks i have functional neurological disorder and that i should do CBT and pysio to improve my functioning (i already know CBT is horrible for me, i'm in other therapy which is good, i've done some psyio before but she just taught me some stretches and that was it, more psyio could be good but it'd have to be with someone who isn't trying to do a graded exercise therapy type thing since i get PEM). he has mentioned doing a spine MRI but this hasn't been done yet. he said he doesn't want to do further testing for myasthenia gravis but i will probably try to get him to agree to doing a repetitive nerve stimulation EMG or something.
i also have scapular winging on the side of my body with worse muscular symptoms which has also caused a lot of nerve pain, and i might also have some sort of spine issues (straightening of cervical lordosis was seen on a CT scan, they said it was probably due to muscle spasms, and i get a lot of neck pain which might be due to that? as well as a ton of back pain along my spine. might have CCI but haven't been tested yet). since it seems like i'm getting some structural changes in areas where i also get a lot of the pain and weakness and spasms i'm hoping if i bring that up the neurologist might maybe look more at organic causes + the state of those structural changes but i dunno.
he did a basic neurological exam in my initial appointment with him and said that i have give way weakness/waxing and waning weakness because when he got me to do the pushing my limbs against resistance i could do okay for a couple seconds but couldn't maintain it. he also said in the letter that i had positive hoovers sign however i am.. very confused by this because from my understanding hoovers sign is mainly looked at when someone has one limb that's at least somewhat "normal" and one that either can't be moved or is very weak, and then the person can't move the weak leg but when asked to push the stronger leg against resistance they push the weak leg down. both my legs are strong enough that i can stand and whilst one leg is a bit weaker they're relatively similar. i lifted and pushed against resistance with both legs so.... i am not sure how hoovers is applicable here? does anyone know why it was applied and if that was correct or if i should be challenging that? he's saying that the give way weakness and positive hoovers are indicators that the problem is "non-organic" and therefore should be treated with CBT and pysio.
i'm not sure what i think is actually going on. i think myasthenia gravis might make sense, but also so could other neuromuscular diseases like a mitochondrial disease or something. also very possible it's myalgic encephalomyelitis (aka chronic fatigue syndrome) but obviously that one is a diagnosis of exclusion so i want to rule other things out if possible. i want to know what's going on so i can have the best chance of being as well as is possible for me. i know CBT is not right for me and whilst some type of pysio could help a bit/prevent some decline (based on past experience i know it won't Cure Me but obviously it can help a bit to build some muscle or maintain range of motion and things like that which are important) if there's other things i can do on top of that i want to.
i've tried to do research to work out the best tests to ask for and i think EMG might be good but also know a normal EMG doesn't typically pick up myasthenia gravis so it needs to also have repetitive nerve stimulation i think?
i can't see a different neurologist at least not anytime soon, so i need to get this neurologist to do as much to help as possible. a social worker from where i get therapy is coming to the appointment to help me so that should be good but i need to work out what the best way to advocate for myself is and what tests are going to be the most useful to ask for.
if anyone has any advice for getting doctors to take you seriously or for any tests i should be advocating for or conditions i should be looking into or anything i would really appreciate it <3 (emoticon description: heart)
#in case it's relevant: i also have type one diabetes autism and POTS#things i've had ruled out : FSHD and multiple sclerosis (had brain mri and spinal tap) tho a nurse told me she thinks i should get checked#for multiple sclerosis again because it can have false negatives? not sure#FSHD was tested through a research project thing and the result was negatiev#medical tw#doctors tw#gonna put this in a couple of tags so people who have had similar experiences/might have advice might see it#cripplepunk#actually disabled#neurological disease#neuromuscular disease#ME/CFS
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oh im gonna hsdgfjk
okay so three+ months ago i discovered I had a Fun Condition called perioral dermatitis. basically, just this Extraordinarily persistent face rash that looks like a bunch of small pustules in a circle around my mouth, but it also went around my nose and eyes. reacts to literally fucking Everything, deeply annoying to treat, even with antibiotics it takes weeks but usually months to clear. causes are ?? can be anything from inhaled steroids, face cream, toothpaste, hormones, etc. basically impossible to pinpoint. i have some guesses about what triggered it but ofc no real way to know for sure.
i go on 90 days of antibiotics. cool, whatever, condition dissipates but doesn't go away entirely. i think nothing of this bc I know even With oral antibiotics, it can still take months.
halfway through this treatment i develop arthritic symptoms. i also think nothing of this bc I have Some sort of illness undiagnosed anyway + family members have it so while I am definitely not happy w this development, I'm resigned.
i finish the pills.
less than 24 hours later, dermatitis has Returned. i know that allowing this to happen makes it worse and last longer. i cannot stress enough how bad it will be for my mental health if this happens. yes this probably sounds overly dramatic but I'm pretty sure watching my face flare up in any way is a legitimate trigger atp after dealing with cystic acne.
anyway. i book an appointment with my gp bc the pharmacist cannot refill the antibiotics. great except the appointment is at the End Of The Month, and I know this is going to be bad in a few days time. like, in the last few hours the inflammation has already accelerated, who knows how bad it'll be then, I'm assuming it'll be like I never even took the pills to start with. i am going to have a nervous breakdown.
mysteriously, the arthritis symptoms have Also started to decrease after stopping the antibiotics. that's weird, I think, that wasn't brought up in the list of side effects when I asked, but the timing is literally exactly when my face started flaring up so I know I definitely don't have those in my system anymore. i look this up, to see if there's a link.
'''acute polyarthritis''' also described as 'drug-induced lupus' are you Fucking Kidding Me
so i am now back as Square Fucking one for this shit, my skin is about to be so goddamn inflamed & I apparently can't even take the drug that was working to clear it up. because it causes inflammation in my joints.
and like i cant really express properly how mad this makes me lmfao because of Course. i spend a solid year on Accutane finally after being deterred for nearly a decade, i get maybe 4 months of enjoying my skin after I'm off of it and then This Shit. can i win?? can i Fucking win??????? no one else in my genepool seems to deal with this shit its just me and ohhh my god i am This close to walking straight into the ocean.
#the frustration is actually getting to me.#like. holy fucking christ.#and for what??? for WHAT.#i havent even been really going out or wearing makeup At All bc its the internship semester so !!! there was No Fucking Reason for my skin#to react to ANYTHING in the first place#its so shallow i feel so stupid but like I've actually cried multiple times over this#n o t h i n g i do works. every treatment every attempt it doesnt matter#it TANKS how i feel about myself. i cant help it.#and like idk what to do!!!!#looks like im gonna try to see a derm again but that's always a multi-month waiting process.#the thought of still looking like this when I graduate is so so upsetting. i want Pictures I want to look good. please?? fucking please???#thats several months away now but the timeline for curing this is so slow and that's assuming your treatment works anyway.#90 days of an antibiotic Should have done it idk whats wrong with me#anyway fgfhjh i Am going to cry now lmao I hate this.
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Help me get my shit together!
(customary dont tag as d0nati0n or fundrai$er, dont get this nuked lol)
Hey yall, in case you thought I was exaggerating about having to make this here we fucking go :'). Ngl this feels really really weird but I'm having a Bad Time atm and would be really thankful for any help. I'm trying to get some assessments done but the NHS waiting list is literally 9 years long for the specific department I've been referred to. My only other option is going private, which sucks but I need this done ASAP :')
My goal is (read: has to be) £1800 -> for a cost breakdown check the read-more
EDIT: I've changed the goal to just £895 just to take things step by step
to help -> click here
Once I am stable on the medication, I will be able to continue forward with my usual GP and will no longer have to pay for medication.
My family has helped where they can but aren't able/willing to help with this (fuck me I guess :/) I'm currently in the process of finding a job which will help but in the meantime, if you're able to help a disabled, queer jew I would be beyond thankful. For those interested, or if you're curious as to why this is so expensive I've included a cost breakdown beyond the £895 in the read-more.
If it helps sweeten the pot and you're in the UK, send me proof of a dono of £5+ and I can make you a small cross-stitch hoop (about 3in diameter) with a design of your choice - I seem to specialise in Stardew Valley designs and will happily turn your pet into your farm assistant <3
If you don't want to donate through the link, you can tip the blog, or if you can't donate I would really appreciate boosting this so folks who can donate see it.
Breakdown:
Assessment - £895
Follow-ups x4* - £900
Estimated cost of meds - £50 per month (I can squeeze this into my current budget for spending)
* They request 3-4 follow-up appointments, one per month, to titrate meds appropriately, the cheapest option is £225 per appointment. I've set up for 4 here because A. knowing my luck it will be that and B. I would much rather be prepared for this than have to be on the hook for an unexpected £225.
Here is the link to the clinic's fee page for full transparancy.
Again, once I am stable on the medication, I will be able to continue forward with my usual GP and will no longer have to pay for medication.
#mutual aid#help#signal boost#how do you tag these things#help your tumblr elders ive been here for 10ish years now
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I put off getting a doctor so long that it's now been 3 full years since I had an appointment and I have my like. Introduction appointment with a GP on Thursday which has been making me nauseous for a month. I keep rehearsing it over and over in my head but at the end of the day I have no idea what this Dr is gonna be like or what questions he'll ask etc. I had to wait 8 months for this appt bc of the Dr shortage and I still have to drive 30 min to get to him so if he's a dick idk how I'm gonna be able to avoid him or if this is just who I'm stuck with forever. And since my lungs and sinuses have been worse lately i feel like I'm gonna have to go in and be like 'yeah I can't breathe. I have seen doctors. I have had testing. I have tried many medications. No one and nothing has helped. I'm just one of those people who can't breathe I guess." and hope he's not one of those people who thinks it's an easy solution that he can be the hero for fixing by giving me antibiotics and then getting weird when I say I don't wanna take them bc antibiotics don't help with it. Like. I'm literally just going to say hello and be like 'i am here for three (3) referrals to specialists and then we can end this agonizing charade, please don't make this worse than it needs to be'
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Awwww, thank you so much. I like to think that my college education was put to some use, my degree isn't doing much since I'm not working in my field, but fanfic writing skills be popping off. My editing skills are still nonexistent, like proofread, whose that, who does that, I don't.
Allow me to give you some more possible ideas, since the ideas are ideaing today.
Naeyon getting into a catfight with Shiah. Maybe after Jay puts her in her place, she running her mouth and starts some shit which causes Naeyon to act. I feel like Naeyon is definitely a hairpuller and would probably scratch her up real good with her fake nails.
Shiah knows Jay prefers all employees to leave their company macbooks at the office unless they are leaving for a business trip, she notices y/n taking hers home, not knowing Jay allowed her to, she then decides to steal it one night when y/n leaves it not needing it. The next day she tries to get y/n in trouble with Jay for having 'lost' the macbook, possible not knowing they have gps trackers on them just for this exact reason, incase they get stolen or anything. Jay is all oh we'll just track it, and she absolutely freaks out like track it what do you mean track it, and Jay's just like yeah remember your hire paperwork it says all company macbooks and phones that we provide come with a gps tracker just incase you misplace it, and now she's gotta explain how it ended up at her house.
Shiah trying to mess up y/n by forwarding her the wrong dates for a international meeting, so Jay and her show up a week early, y/n shares the email she has with Jay, and he's just like it's okay, it's been a while since I've visited here, and turning it into a mini vacation, meanwhile Shiah is just like he's fired people for less.
Shiah getting into Jay's office, possibly he's in a meeting and y/n is out that day so no one is there to see her do it, and somehow getting through his password and going into the employee management system and firing y/n in the system. Possibly y/n is off that day, a doctors appointment or something, and Aeri working in hr sees it pop saying she needs to collect some paperwork from Jay regarding it and schedule and exit interview for y/n. She immediately texts y/n freaking out and then goes to Jay to get the paperwork signed, and he's just as confused why it says he fired her, and Shiah's little plan fails since she doesn't realize it has to go through like 4 other people, one of which being Jay, who would notice it and assume it was a system error.
Shiah purposely spilling her coffee on y/n, soaking her white blouse and ruining it, not realizing Jay was watching her. She tries to say y/n ran into her or something, but Jay just gives her his suit jacket and is like here is the company card you can run to the shop across the street and replace your shirt since it wasn't your fault, and Shiah's just like he doesn't give the company card to anyone usually. Possibly it wasn't the company card either, it was his personal card, and he feels that slight tinge of joy knowing he's taking care of her and she's wearing something he technically bought, also get a massive love boner from her wearing his jacket.
A pipe breaks in the office, destroying y/n's desk and all since it was right over her desk, it's only going to take a day to fix, so Jay lets her work from his desk, since he's going to be meetings doing performance reviews all day, and she can't be in those, and so all she has to do is respond to emails saying he's in a meeting and unavailable and schedule other days, and Shiah is just seething with hatred seeing y/n sitting in Jay's chair in Jay's office, since that's her man and that should be her.
Jay has to leave for a sudden meeting, y/n unable to go with him, and so Heeseung invites her to come work in the marketing department for the day, since he knows how Shiah treats y/n, and doesn't want her to have to be around her all day especially with Jay gone. Shiah thinks y/n finally quit or got fired, so she celebrates seeing the empty desk, just to get crushed with reality as the next day y/n is back since Jay is back, and realizes y/n didn't quit or get fired.
read these this morning and you bet your ass i'm going to make use of at least one of these 🫣 the way your brain works will never leave me stunned and speechless like especially the one with y/n sitting in jay's chair and the one with the company card is so erotic romance novem coded and i love it so much URGH this makes me want to just post several times a day just to get to these plots 😭 thank you so much baby
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We got 6in/15cm then 14in/35 cm of snow right after each other, which is a lot, and it took some digging out, so there hasn't been school since Tuesday. We had online school, but that's exhausting and pointless. Felix can't go to daycare if I can't drive there, so he's been home, which he doesn't really mind. I think he misses his friends and activities, but...he's a sweetie. He likes google meets.
It's been a lot. I've had a headache since Wednesday too, which is annyoing. I'm pretty sure it's a migraine, it was worse for two days, it's different today, so it might be more of a ending kind of thing? it's a lot. I will ask my GP when I go in, but my appoitnment was supposed to be Thrusday and...that didn't happen. Thanks snow. I'll try again. I'm not sure how much they can even do for migraines. Other peoople I know who have them just...have them, and meds. MAybe the meds are good.
On a normal workday I really just have to make dinner, but we're home so it's breakfast lunch and dinner and entertain Felix and my dad is a lot and it's just...constant.
Like I got to be alone long enough to shovel out the car, drive the car to the big parking structure downtown, take transit back to the house. I'll have to go get it after breakfast tomorrow. Then grovery shopping and standard weekend and...
I can't even take a nap when he's home because he doesn't nap and he has to be entertained and he will snuggle up and watch part of a movie but he wants me to be awake. He has opinions and he likes to act it out and run around, which is adorable, but it's really hard when my head hurts.
I aalso don't parent well when this happens. I don't read to him enough or come up with enough ideas, and I have to start things before he'll do it. He's too little to decide "oh I want to color" so I have to start coloring and color with him, and he's too little to want to paint, so if I want him to paint, I have to start it. There are too many toys and some I should get rid of because he really doesn't play with them. He likes scaarbes and running around. Again, this is great, he's great. I'm not doing the best job.
It's the out of spoons wall again. On the upside, it's not a "oh I'm out of spoons for fic, because I did get some of that done, but it's a definite out of spoons for my life. (great).
But it'll be all right. We caan go places and I'll figure out something it's just so much starting and responsibility. Like... dad doesn't do chores unless I start them. He'll load and unload the dishwasher, but I have to feed him and Felix and decide what we're going to do, and balance if Felix is annoying him and try to come up with food both of them will eat.
and I don't want to. Feeding Felix is fine, and I love him, and he's honestly a pretty easy kid. I fail him so much more than he does anything. He's going through a "oh I'm not hungry" phase which leads to losing it, because not eating is bad for tiny humans but he doesn't get why.
and it's one thing if he's having a tantrum and I have to deal with it, and I usually do okay. It's weird when we're being watched, or dad wants to be involved, because it's not...it's not helpful. I'm not sure what would be helpful, but having this other parasitic adult around isn't it.
I expect the constant caring for Felix, he's 4. It's hard when it's another adult. There's no reciprocation. It's just... "your coffee is on the counter" "you haven't showered" "I thought you were going too..."
I'll get it. I'll do it. stop needing things from me. (even input, because I have to constantly do...things and say things and comment on things and I already am at my maximum of giving.
I think it would be less if some things were different. Snow days witout work or no migraine or like...dad went somewhere. He doesn't leave the apartment unless it's a medical appointment, and he really doesn't have enough of those. I don't think he realizes how nice it would be just to sit in silence.
I can kind of get it at 3am, but I pay for it the next day.
#personal#it's that really tired I'm going to cry feeling but I won't#maybe I should#it'll be fine it's heavy today
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I'm very sorry to interrupt the wholesome bf fest, but I need moral support. My fantastic gp of 10+ years has relocated. Three months ago I mustered up the courage to ask if I could be evaluated for ADHD and she was immediately on board with it and said she'd look into it. I just met the new gp and she says that there's no testing for ADHD, that undiagnosed ADHD in a grown woman is practically unheard of, and that the treatment is amphetamines and anybody would get a boost in concentration if they took that, with or without a disorder. I'm not sure if I want to melt into the asphalt or commit a crime. I don't really have the money to go to private healthcare for this, so for the time being I'm just chugging down caffeine.
get a second opinion. most surgeries don't assign you to any one specific GP at the practice so you can either 1) make an appointment with a DIFFERENT doctor there or 2) register with a different practice within your catchment area
personally before doing those I would turn up with a stack of scientific journal paperwork proving her dumbass wrong and forcing her to do it before then reassigning myself to a different GP anyway because I'm a petty bitch
if you don't get anywhere with a different GP at the surgery, or for some reason they won't let you see one, file a complaint. first with the surgery (basically just write a thing to the practice manager - hand it in to reception making it clear you are filing a complaint - detailing your concerns with that doctor denying you access to healthcare and being uneducated on the topics but refusing to research it leaving you Utterly Fucked).
If that doesn't force a referral - doctors don't like it when you embarrass them in front of the whole surgery I speak from experience this normally works - you can complain to your local NHS board
it's a shit process and a lot of work but sadly there are many GPs across the UK who know shit-all but won't bother learning and they are part of the REASON it's so underdiagnosed since we can't get a referral to psych without their approval
people without ADHD don't get a "boost in concentration" on amphetamines. they get HIGH lmao has this woman never heard of speed. does she think people do speed at the club to work on math problems
the ADHD diagnosis guidelines for scotland (written for patients) acknowledge this and are basically like "keep annoying the everloving shit out of them until they do it"
until then: caffeine
#i also used cocaine which is about as strong a stimulant as adhd meds but shorter acting#however the usual caution is advised when procuring and using illegal narcotics#obviously speed would also work it just depends which is easier to get hold of where you are
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Today's been such a complete mess.
My stomach decided to flare right back up over two Bacon Bits and a damned Olive, of all things (literally. I'm so annoyed!). So I'm stuck eating mashed potatoes again for another week. Huzzah!
Then my Savella didn't get delivered Monday like it was supposed to be. So I waited yesterday to just see if they needed to order it, and if they'd deliver it tomorrow. That wasn't the case, though, so we had to go all the way down there today- only to find that it's on "indefinite backorder and they have no idea when they'll get it in". Which, like, it really would've been nice for them to call and tell me that when I initially made the fill order Monday so I didn't have to scramble to find a solution on the very last day I had any doses for a medication that puts me in severe shaking pain and withdrawal! But I fucking digress, I guess ?????
At the very least, we think we may have found a pharmacy that can get it- but it means I have to skip tonight's dose so that I have one for in the morning, so I'm not putting my body through too much of an immediate shock ... And pray they manage to actually get it ordered and in; I'll find out after about 10 am tomorrow.
If not, I have no idea what I'm going to do. I still have the bottles of both Cymbalta and Gabapentin from when we were initially trying to find meds that worked for me. So if it comes down to it, I guess I'll just try and take those despite the fact my body very clearly doesn't work with them and I have very adverse side effects to both. But I mean, what else can I do if no pharmacy in my area has any in stock (we called all of them today) and would have to order it anyways, and it's on backorder everywhere?
My GP (thankfully I had an appointment already scheduled with her today for our routine; thanks Lyrica- the drug that doesn't give me any form of withdrawal but is still unnecessarily scheduled as a Class III for no actual reason!) suggested calling insurance and getting the info for whatever mail-order service they're contracted through, and seeing if I can't get a dose through them instead, if none of the pharmacies can get it. But that still doesn't really help the whole withdrawal situation while I'm waiting on shipping.
If it comes down to it, I'm probably just going to have to deal with full body wide pain so bad it causes an inability to move to so much as use the restroom, medication withdrawal, and searing migraines for who knows how long (can you tell I've been through part of this before?) ... It's not like I have any other choice right now.
Garden updates in a different post for the sake of y'all's sanity.
#I hate my body and this doesn't help me love it any more#It's Not An ED It's Just ✨Gastroparesis✨ + ✨IBS✨#Fibromyalgia: The Fuck You For No Reason Disease!#Personal#Alphabet Soup#Body TMI#Trigger Warning#2023#NonTrad Housewife#NonTrad Homemaker#Healthblr#Pagan Homemaker#Pagan Housewife#Homemaker#Homemaking#Housewife#NonTrad Homemaking#Pagan Homemaking
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Yet another health update
My anorexia seems to be dormant again now, so my GP has given the okay for me to try out Latuda
My GP's not comfortable with anything other than giving repeats for prescriptions other people have written, so my options are staying on Seroquel, changing to Latuda, or going unmedicated
I'm having to put my Wellbutrin on hold for a while bc I can't take it without an antipsychotic, so I've been feeling tired from not taking it as much, but cutting back on Seroquel now is giving me some energy back
We've been trying to get me a new psychiatrist, but 4 different hospitals so far have all said no 🙃 so CMHA is gonna see what strings they can pull for me to get a consult for recommendations which might make my GP feel easier about giving me psych meds
My gynecologist has a new receptionist, so now there's 2 of them, and I like the new one better than the old one, who ignored most of my calls when I tried to call 24 times in 1 month while I was in a lot of pain and distress
The new receptionist had called me to make an appointment for the end of August to have a surgical consult and I mentioned to her that I'm changing my psych meds, so I wanted to just say ahead of time that even though I might have trouble communicating when it comes time to sign my consent forms, I've been wanting this surgery for months already, in case anyone has any doubts about my ability to consent when I'm doing my consult
(Not that I think my gynecologist would do anything with the intention of being an asshole, but in case she wanted to delay anything out of an abundance of caution)
That receptionist then called me a few days later to say she found out I can have my consult at the same time as my July injection, and she asked for clarification about what I said about my psych meds, and she and I decided that I can keep my August appointment and do my consult in July or in August, depending on how able I feel to fill out those papers when I go for my injection next week
(I like this new receptionist, she was really nice about the whole thing with my antipsychotics)
I think I'm gonna ask the gynecologist if I can try being without Lupron for a lil while after surgery?? Bc I don't like how it's altered my body shape or my facial/body hair, but maybe I just need to stick with the Estrace and Jencycla for a bit longer... I have my kit for this time around and it's another 3-month injection, so it won't be for a while that it would even be possible for me to be without any gynecological medications
#the estrogen is slapping right now#speaking of not well adjusted#maybe she was born with it maybe its body dysmorphia
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