#also i have a doctor's appointment next week that i still need a referral for but i don't want to see my gp for the referral so i'll have to

[tkbrokkoli]

gotta get back to work tmorrow 😔

[neurodivergentbraingoblins]

This post is a shout out to all my chronically ill friends ❤️

"If you are in that much pain just go to the emergency room" 🤣🤣🤣 no, just no. The ER does not do what most people think it does. It exists for people who need to be stitched up or suddenly broke a bone. They do NOTHING for pain management and actually will verbally harass patients for going in and wasting their time. I know. I've been one of those patients harassed by the people who are supposed to help me.

"They gave you a referral to a specialist right? Are they going to see you next week then?" - it took 3 months for me to get an appointment with Neurology after getting the referral. Genetics took 2 months, cardiology was a month, and I'm still waiting to hear back from St. Louis about seeing a neurologist there (that referral was put in on August 9th). It takes months to get in to see these doctors, then they spend about 5 minutes (10 if you're lucky!) talking OVER you. Every visit is a fight against the doctors ego to see if you will actually get help this time.

"Maybe you should go to Mayo Clinic or some other place out of state!" - cool, who is going to take me? Who is going to take a few weeks out of their own life to drive me there and stay with me while the doctors do their thing? I can't see so I can't drive myself. I haven't worked since July because of being sick, so I can't afford a ride or place to stay.

"Can't you go a couple days without medication? I know the pharmacy ran out, but it really can't be that big of a deal right?" - I don't even know how to respond to this one. Seriously? The doctor put me on the meds for a reason. Most of them have serious and dangerous side effects when you go through withdrawal. Also depending on how long I'm without them, I have to start back at a lower dose and work back up to the dose I was originally on. Which means TWO prescriptions that I now have to pay for.

"Do you really need to bring your walker/cane with? It's annoying to try and get it in and out of the vehicle. Plus it just slows us down" - do you really need your legs with? It's annoying having to wait for you to put your shoes on. Plus when you wear those specific shoes you walk weird. If you can't stand someone using a mobility aid to help them get around then go find a new group of friends to do things with. I have just as much of a right to be able to go out and enjoy things as anyone else.

There are plenty more things I could add to this post but I'm exhausted.

[breelandwalker]

Oh Here We Fucking Go....

Me: Okay, so I need one referral for a derm and one for ADHD meds.

Doc: Okay. In the meantime, your blood pressure's a little high and let's talk about your weight.

Me: .....I'm currently smack-dab in the middle of a move, a bereavement, a sick pet, and a mental health crisis. If my bp is high, it is likely because I am STRESSED lol.

Doctor: Yeah but still let's get you back in in a month for a bp check and talk about some weight loss goals. You need lower bp for the meds anyway.

Me: ....Fine.

One Month Later....

Me: -aces the bp check- I've been feeling better and things are calming down, so I'm way less stressed now. I cut my salt intake and added some daily fitness goals just in case.

Doctor: So let's talk about setting some weight loss numbers-....

Me: Wait, why are we talking about my weight? That's not what I came in for.

Doctor: Well you're forty now and your bp was high and you're over 225lbs, so you should really look into losing-....

Me: -not loudly, but firmly- I CAME HERE TO GET A MOLE REMOVED AND GET ON ADHD MEDS. NEITHER OF THESE HAVE ANYTHING TO DO WITH MY WEIGHT. CAN WE PLEASE FOCUS ON MY INITIAL CONCERNS. THANK YOU.

Doctor: Well geez, okay, no need to get upset....

Me: It is 930 in the morning and I'm missing work to be here, just to have you completely ignore my concerns about skin cancer and mental health in favor of focusing on the size of my ass. I will handle my weight on my own time and if I have further concerns that are directly related to a number on a scale, we can discuss them. In the meantime, can I PLEASE have the referrals I asked for LAST MONTH.

Doctor: ....I'll need to get you in next week, I honestly thought we were here to talk about your weight and your blood pressure.

Me: -Four Second Death Stare- I'd also like to be assigned to a different doctor for my next appointment.

[cbk1000]

So, I have another crazy story about the clinic where I used to work; this time as a patient instead of an employee. Under a cut because it's very long.

So back when I first got really sick, I was in the hospital a few times primarily for really high heart rate. I work out a lot and my normal resting heart rate is in the 60s; back in February I suddenly started getting palpitations, and my heart rate was going up to like 140 bpm just standing at my bathroom sink washing my face. I wore a seven day monitor at one point and my highest recorded heart rate on that was 157 bpm--just shuffling like a zombie around the house. I was also super weak and just felt overall like death.

Hospital runs a bunch of labs and imaging tests and can't find anything that would explain it. The last doc I saw said there was a bright spot on my echocardiogram monitor that could just be flashback from the monitor, but taken with some of my symptoms, he felt OK with a presumptive diagnosis of pericarditis (inflammation of the sac around your heart), especially as the treatment is just high dose ibuprofen for a week, nothing invasive or drastic. I need to follow up with a cardiologist, but I don't have a primary care physician who can refer me to the heart clinic. I had just turned in new patient paperwork at a local clinic so I contacted them to see if I could get in, but they said it would likely be a month before I could be scheduled with anyone.

In the meantime, the ibuprofen isn't working and my condition is getting worse. I have my next period, and after a couple of heavy days, I get even weaker, my heart rate goes even higher, and I get really dizzy all the time. I also am now short of breath just rolling over in bed. I legit feel like I'm dying. Because my symptoms get worse after blood loss, it suddenly pops into my head that about 17 years ago after a blood donation I got really sick, and all my symptoms that I can remember having at the time are the same, especially the cardiac issues. I took iron back then and that resolved it. I started wondering if my iron was low, did a bunch of research into iron deficiency without anemia, and realized every single symptom, including ones I had been having for a while prior to the heart issues (terrible fatigue, brain fog, headaches, sleep disruptions, restless legs at night) could be from low iron.

So I need to get labs done, and also I do still need a referral to make sure my heart is ok. I can't get in with anyone, so out of desperation, I go back to my old clinic because I know they'll get me in quickly. They schedule me an appointment for the next day with a doc who is going to turn out to be batshit crazy.

I go to my appointment with my presumptive diagnosis of pericarditis, and the doctor asks if I had the Covid shot. I tell him yes, but my last booster was in 2021, so not relevant here.

Well boy howdy was I wrong. He launches into a whole-ass rant about how bad the shots are, how many people have been injured by them, tells me I, a formerly very healthy, athletic woman, now have heart issues due to the shot, etc. etc. I say, 'Ok, but would the shot really randomly cause me issues three years later when I was perfectly fine after I got it?' (The answer is no.) Doc stays the course in blaming the shot. I have paperwork I need filled out for medical leave from my job, and he PUTS ON MY PAPERWORK THAT I HAVE TO TURN IN that my cardiac issues came on and progressed after the shot (three YEARS after, you DUMBASS) and that his impression is post vaccine injury. I feel too badly to do much more than sway on the exam table and occasionally interject that I had the shot three years ago and I don't think that's the problem. The majority of my appointment is him ranting about the shots. Whatever, I'm desperate, give me my fucking referral to the cardiologist and order my iron panel.

I get labs done and sure enough, my iron is low. I start supplementing and shortly afterwards get a call from the cardiac clinic; I lucked out and got in just a few days after my referral was sent to them because someone canceled their appointment last minute. I see an ARNP at my first visit and she says the echo I had done at the hospital looks fine to her, but they'll do a seven day monitor, a repeat echocardiogram, and have me follow up with the cardiologist just to make sure they don't miss anything.

So they do this, and in the meantime, after a couple of weeks on iron supplements, I start slowly but steadily feeling a bit better. My fatigue and brain fog that I was having every day improve significantly after only a week on supplements. My dizziness goes away. I feel a tiny bit stronger every day and now can sit up longer and start holding conversations with people. It's slow but steady progress for about three weeks: and then I get my period again. It doesn't knock me back to square one, but I definitely take a couple of steps back in my recovery. It's a little lighter this time, though, which is a good sign.

I follow up with the cardiologist. He says actually my heart is in really good shape; no signs of pericarditis or anything wrong with it; my high heart rate isn't due to a cardiac issue. Cool. I didn't think so at this point, but good to hear I don't have heart issues.

So I go back to follow up with my doc and plan to ask to really focus on the iron issue since the cardiologist confirmed my heart is fine. I have come a long ways but am still mostly bedridden; it is very slow to get your levels up on iron supplementation, and every time I get my period, it sets me back a little. Maybe some low dose iron infusions would help boost my levels so my recovery doesn't go backwards on account of me bleeding for a week every few weeks.

Doc comes in the room. He is clearly Not Happy cardiology did not confirm his conspiracy theories about the shot injuring me. I tell him about the symptoms I have seen improve and even resolve after about six weeks on iron supplements, and how I think most if not all of my problems are from low iron. He pretty much completely ignores this. He asks me if my fatigue and brain fog have improved. I say, yes, they were some of the first symptoms to improve after I started taking iron. He does not even acknowledge I have spoken. He tells me he thinks I have a combination of chronic fatigue syndrome and POTS (postural orthostatic tachycardia syndrome) caused by the shot. I remind him I just told him my fatigue had improved a lot since starting iron. And my heart rate is coming down too and not spiking as much, my issue is that every period after I've been improving, I suddenly get a little worse again. He ignores this. He tells me he is going to refer me to the neurologist to check for chronic fatigue and POTS. Ok, whatever, I'm pretty sure I don't have those things, but fine, have another specialist tell you you're wrong.

After about eight weeks on supplements, I really feel like I'm starting to turn a corner. I don't feel normal, but my heart rate has come down quite a bit, I can stand and walk around a lot longer without feeling like I'm going to pass out, and I feel the closest to normal that I have been in months.

And then I get my period again and my heart rate goes back up. I'm super frustrated at this point because I was So Close to being a functioning human again, so I decide to push for a low dose iron infusion. I just want to boost my levels high enough to get me over this hump so every period doesn't set me back right as I feel like I'm coming back to life. I've read lots of papers on iron deficiency without anemia (meaning your hemoglobin is normal) and decide to make an appointment armed with one paper in particular which was written by a doctor who has been treating iron deficiency for decades, and which lays out really comprehensively the numbers at which patients should be considered deficient based on their labs and symptoms, what numbers you should shoot for when treating the iron deficiency (I am higher now but still quite a ways away from the goal), and also lists a bunch of symptoms women in particular have reported that have resolved with iron treatment. I highlight all the symptoms on the list that I have had, as well as other sections particularly relevant to my specific case. (Spoiler alert: I did not even give him the paper.)

So I go to my appointment and he asks if I've heard from the neurologist yet. I say no, I'm sure it will be a while (there's only one in town, and I'm sure it takes a long time to get in). In the meantime, I really want to focus on getting my iron levels up. I lay everything out: all the improvements I've seen, how my period keeps setting me back, and how I want to try just a low 100mg infusion to boost me up so I don't take two steps back every time I get my period. He tells me I have chronic fatigue and POTS as a result of the Evil Shot. I tell him, once again, that my fatigue has greatly improved on iron supplements. He does not even acknowledge I have spoken. He tells me a local doctor is being PERSECUTED and PROSECUTED for prescribing Ivermectin for Covid. Ok, that doesn't relate to my personal medical issues that we are here to discuss, and also, Ivermectin is not approved for the treatment of Covid. I ask him again if I can get a low dose infusion. I understand insurance probably won't cover it, that's fine, I can pay out of pocket, I just need him to order it. He tells me he personally takes Ivermectin. Good for you. Again, not related to my medical issues that I am here to dicuss.

I mention that I have had restless legs at night for a long time, because I know this at least is commonly associated with low iron, maybe that will get his attention; nope. He totally ignores me again. I even try blaming the shot for low iron (sorry, Covid vaccine, sometimes you have to take one for the team). I say I have read Covid and maybe even the shot can deplete your iron; maybe the shot did this to my iron. No dice. (Mr. Jenn did applaud me for trying when I told him about it, though.)

He starts in about my POTS again. I say, ok, but POTS is a postural issue, right? He says, yes! I say, ok, then if I have an issue where my nervous system doesn't regulate my blood flow properly when I change from sitting to standing, why is my resting heart rate way higher than normal when I'm just lying in bed doing nothing, and why has my heart rate been coming down and is not spiking like it was after several weeks on iron supplements until I get my period? I'm not sure that fits with POTS.

He again does not even acknowledge I've spoken.

I ask again for an infusion to help boost me up so I'm not set back every period. He says as long as I'm menstruating it will set me back. Yes, I am aware I will lose more iron on my period, what I am asking is that while I am in ACTIVE CLINICAL IRON DEFICIENCY can we please do something to speed up getting my levels high enough so every time I bleed it doesn't knock me down again. He asks if I have considered a hysterectomy or uterine ablation for the bleeding (you know, invasive surgeries, instead of talking about birth control pills, which he didn't even mention). I said that was kind of extreme and I didn't want to consider that right now. I ask him about the infusion again. He says it's not a concern. I say, yeah, it is, I am having debilitating symptoms that have left me bedridden for three months. I need to get back to my life and my job. He tells me Congress is investigating the shots and it will come out how bad they are, but a lot of people won't believe it. I say, well, that's Congress' business, can I please have an infusion. He tells me insurance won't cover it. I say I know, I already mentioned that earlier (while you were ignoring me in favor of ranting about a vaccine I had three years ago), I have a health savings account, I can pay out of pocket. He tells me he's pretty sure I have chronic fatigue and POTS but we'll see what the neurologist says. I need to call and see if I can get in more quickly with the neurologist. I say, ok, in the meantime, since realistically it could take months for me to get in with the neurologist, can I PLEASE HAVE A FUCKING INFUSION. He tells me if I want one I will have to badger another doctor into it. (I can't remember the exact word he used, but the way he worded it made it sound like I was trying to bully him. No, you jackass, I am asking for an extremely common, low risk medical treatment for issues that have left me unable to work or leave my house for anything other than doctor's appointments for THREE MONTHS.)

So I left incredibly frustrated, needless to say.

Next day Mr. Jenn goes to his appointment at the clinic I initially tried to get into to follow up on labs he had done for an annual physical, and his doctor tells him his cholesterol is slightly high, but not enough to be concerned, he just needs to watch his saturated fats and red meat intake. Mr. Jenn tells him we've actually temporarily increased our red meat intake because of my health issues. He then mentions all of the issues I've been having, my lab results, and how I've improved a lot on supplements, but keep getting set back by my period. His doctors goes, 'Have you guys looked into infusions for her? You should try that.'

I DID BUT MY DOCTOR IS CRAZY.

Mr. Jenn explains that I had asked for an infusion and my doctor refused. His doctor gives him a weird look and wants to know why. Mr. Jenn explains it's because he's super set on it being chronic fatigue and POTS and won't consider anything else even though my 'chronic fatigue' and 'POTS' symptoms have both improved on iron supplements. The doctor again gives him a weird look and asks why he's stuck on those diagnoses and won't consider iron deficiency.

Because he's crazy, good sir.

Mr. Jenn's doctor then suggests we see if I can self-refer for an infusion and just pay out of pocket, but you need a doctor's order even if you're not going through insurance, so the next day when the clinic opens, I call, explain I tried to establish care there earlier so they have my new patient paperwork, but that I needed an urgent referral, and had to go somewhere else because they were a month out, but I really (REALLY) want to change doctors, is <Mr. Jenn's doc> taking new patients? He is not, but they'll put in a note with one of the ARNPs accepting new patients to see if they're willing to schedule me.

However, I know the new manager of the clinic (actually an old coworker from the crazy clinic that I'm friendly with), so the other day I texted her, briefly explained the situation, and she asked which doctor I wanted to see and said she'll talk to him when he's back from the long holiday weekend and see if he would be willing to see me. She will let me know later this week (he's not back in till Wednesday). So fingers crossed I can get in with a non-lunatic soon.

[creations-by-chaosfay]

WOOOOT! I'm getting into pulmonary therapy almost two months earlier than planned! It was originally schedule for October 23rd, but I'm on the waiting list and someone cancelled their appointment. It's in just a few days! As for what it is, my asthma has been a nightmare, and the asthma specialist I've been seeing doesn't know what more they can do for me seeing as I'm allergic to one of the ingredients (milk protein, which is used to mask the flavor of the medicine) in the COPD medication she wants me to use. It makes my eczema flare up like fireworks on New Years Eve. She suggested and immunosuppressant, which I'm strongly opposed to seeing as I already get sick with extreme ease. The therapy is going to help me figure out how to basically breathe again. My doctor thinks I may also have reduced lung capacity due to the covid infection I had in 2022. Fun times!

Next week is going to be packed with doctor appointments now. Let's see, I have pulmonary therapy, an appointment with my PCP, and my twice monthly therapy. The following week, I'm getting an ECHO and EKG on the same day, and will leave with very angry skin because I'm allergic to adhesives. I'm still waiting for a PT clinic to contact me about the referral my doctor sent out when she diagnosed me with hEDS.

The place I had gone to for PT before the diagnosis is horrible. The doctor I was assigned to was an absolute nightmare, and the PT specialist was less than helpful. That doctor diagnosed me as hypermobile, but wouldn't say anymore "because that's not what this appointment is for." She spoke to me for less than ten minutes, told me I'm just imagining the pain in my wrists, informed me I must be incorrect about the ligament removal" in my right wrist "because that's not how things are done," and I need to give up my hobbies if I don't want to have problems.

Y'all, I gave up drawing, jewelry making, calligraphy, and writing by hand because of my right wrist. I'm not giving up making quilts nor playing video games, and need a keyboard I can physically split and set up at angles most favorable to me. A friend has helped me with the latter, but it's out of my budget for now.

Busy busy busy!

[shiroi---kumo]

Guys Bust style commissions are open for now. I have very limited slots so I have time to work on them and I don't overwhelm myself before I accept more.

I only take commissions through artistree and

you can find the link to do so here

I am not offering anything other than bust commission right now and I am only offering 1 character because I am thinking about speed. Please be patient with me I'm doing what I can to replace some of the money I'm losing from being off work. I'm still off and they're making me stay off for a whole 'nother week because of the mess that happened today.

My workman's comp claim got denied and they didn't tell me until monday (HR did, workman's comp hasn't contacted me since) and the doctor I was supposed to see tomorrow was my workman's comp doctor who took me off work in the first place. (Due to this concussion business)

So since workman's comp got denied

(because I didnt sign papers to release medical records but i havent gotten any papers from them in the mail? And apparently it was denied the same day workman's comp called and said they were mailing things for me to sign)

that means tomorrow's appt got canceled and my referrals for PT for my neck got lost and never acted on. So I have to see my personal doctor now but the one i used to see at my office is gone now so a new one and i cant see him until next Weds but work refuses to let me come in unless a doctor releases me.

SO that's where commissions come in.

I have money in savings, so i'm not dying but I also have bills to pay and car insurance coming out and I want to make sure that things dont go to hell BEFORE I get back to work. This also means I'm paying for all my medical appointments because of this concussion and possibly PT now because workman's comp fucked me over. So I need to make some money and work won't let me work. So here we are.

(FMLA is in progress; we'll see how that goes)

So for now I am offering bust commissions to you and I will doodle for you. I just ask if you have OCs please give me visual reference to work from. Thank you.

[spicybees]

congrats on getting top surgery soon! May I ask how the process went for getting the consultation and all that? And what sort of options you had going into it if it’s not too much to ask… I’m hoping to get top surgery myself in a couple years and I don’t know where to start. Thank you so much!

THANK YOU SO MUCH I still can’t believe it’s happening I keep having to pinch myself. I’ll explain below the read more because it gets quite long but I’m more than happy to answer!

Okay so first of all I live in Australia so the process is drastically different than other countries like the US (sorry if you don’t live there either lol) but I can share my experience of the Australian process!

I could have just called up a surgeon without a referral if I chose to but if I did that I wouldn’t receive a Medicare rebate (which takes about 1k off the surgeons final price) so I went to see my GP first and asked for top surgery lol. Keep in mind I had not brought up my chest dysphoria at all to my GP in the 18 years she has been my doctor so it was quite a shock to her. And idk about other states but in Queensland they do require a year of supporting documentation to be considered for top surgery. But I got my way around that with sharing photos of me wearing a binder from when I was 14 LOL. That and my psychologist knowing a tiny bit but really nothing more that I was unhappy so mostly the photos.

I don't have private health so this was done uninsured which means I pay out of pocket for everything but honestly it wasn't too bad all things considered (private health wouldn't cover this anyway so I wasn't losing much) it totaled to about 9.3k for the surgeon, 2.6k for the anaesthetist and 2.8k for the day hospital. That with my rent and bills and food on top totalled to about 17k overall, but it would be much cheaper if you don't need to take as much time off as I do. I get a rebate from Medicare of about 1k (maybe more for the anaesthetist I don't know yet) so when I get that back in my account I would have only spent 16k.

I got asked some basic questions such as if I had any other parts of my body I was unhappy with in a similar way but it really wasn’t that invasive or much. I got my referral and received a call from the surgeons office the next day booking in my consult for the following month! I got asked if I had anyone specific in mind at my gp appointment and before I even replied she suggested the person I was about to say lol, turns out they were in the same year at medical school!

At my consult I explained what I was there for (she was unsure if she had it right bc I do identify as a woman socially and that’s not going to change) but she was amazing and understood exactly what I was looking for! She let me know I needed a psychiatrists letter of approval within 3 months of my surgery date just saying I’m like.. mentally stable and making an informed decision but I knew that already so I had my psychiatrist booked in the following day! I also had my surgery date booked the day of the consult (consult was 29th of August and surgery date is 25th of October) which was tentatively locked in until I got my psychiatrist letter. I also received my estimated cost for everything on consult day.

When I saw her the next day it was my last sorta time I had to explain like yes I’m a girl yes I know what I’m doing which had at this point become kinda annoying but luckily she was cool with it and wrote me the letter. I emailed that to my surgeon and then I got sent my admission paperwork and a bunch of forms I needed to return lol. I also got my pre op appointment booked and got told when I needed to pay by.

At my pre op appointment (earlier this week) I got measurements taken for my compression binder I have to wear 6 weeks post op and I also got pictures taken (awkward), and I was able to ask as many questions as I needed about the process. I suggest writing down a little list because you will forget in the excitement of it all (I had my best friend Shannon come with me for my pre op appointment to ask questions as well because they are going to be my caretaker post op).

Since that’s done and I’ve paid my surgeon I just need to pay my anaesthetist and hospital but that’s done closer to the surgery date. All future costs related to my surgeon such as post op appointments are all covered by the initial cost I paid, but if I need revision surgery that is an additional cost later down the line.

Now for procedure specific things..

Because of my breast size I was able to get keyhole and periareolar as well as double incision as options. I did end up going with double incision purely because I do not want to keep my nipples lol and the scars are meaningful to me. I was happy to know I had the options though! Felt really nice. She explained the options for scar placement and shape and asked whether I wanted to achieve a flat look or more a pec like look too. It was nice to work with someone who understood exactly what I am going for in this and it was really euphoric.

My surgeon does do drains BUT they do not need to be emptied or ‘milked’ as some people say online. She laughed and said that was an American thing and that I just need to monitor the output once a day. She also said I’ll be pretty tender but honestly won’t feel too shitty after and that I don’t need to worry about doing T rex arms lol, and to just work within my bodies limits. If my body hurts I don’t do it essentially.

As for time off from work I do work a physically demanding job that requires me to do heavy lifting, so I needed at least 6 weeks off. I ended up taking 9 off because it was leading up to Christmas and I don’t want to risk stretching my scars. I am going to be very short on money because of this but my health comes first. My boss was super chill about it and I have already sorted out a replacement for my hours since I am a manager and do need to be covered consistently lol.

Outside of that it’s really just waiting now! Shannon is taking 3 weeks of work themself to care for me but I really don’t think I’ll need their help physically for longer than a week, but the moral support is everything. My friends are also helping me out food wise the first week or so :3

I’m happy to answer any other questions people may have but do keep in mind I haven’t actually had my surgery yet so.. I only know so much right now.

[coridallasmultipass]

Vent/personal/health/long post

Omggg so today has been so unbELIEVABLY shitty

First i wake up in pain still from my back going out on sunday when I woke up. That was expected though. My dental aligner trays hurt like a motherfucker to pull out still. Then im getting a quick breakfast together and I get a text from the clinic saying my doctors appointment i needed before tomorrow is canceled AGAIN. I had to check with the clinic and the specialist (appointment tomorrow) if its okay if I have renewed referral clinic appointment next week. So fingers crossed thats okay, because thats whats happening its not possible to see the clinic before the specialist, and ive had the specialist appointment for months, and the clinic only told me i need to renew the referral on last friday, and ive had appointments every day this week. Whatever. It is what it is.

Then im pouring cereal, drizzle a little agave on top because its unsweetened, and then immediately knock the bowl over all over my lap, sticky side down. I still cant go pick up the bits under the table now, because its killing my back to even pull the chair out, my back is in such bad shape. (Was gonna ask the clinic doctor to help out w it too but i guess im going this whole week without a treatment plan, just taking old painkillers lmao.)

Speaking of painkillers, i have one left of this bottle. I have another painkiller type, but its way too strong, and even if i cut it in half itll be too strong, but im gonna have to use that if i dont have any improvement.

So all that above was the easy peasy part of my day. Next is my appointment to renew state benefits (for food). I get EVERYTHING ready all gathered into the one spot in my room i know i can get consistent cell service, and settle down. Phone appointment time comes. I hear the landline downstairs ring. Fuck. I grab my phone and paperwork and i cant make it in time both because of my back problems and also because the landline only rings twice. I literally grabbed the phone as the case worker stopped speaking on the machine. Fuck again. I cant understand the phone number they said on the machine. It takes me a minute to realize its the same number on my paper work. I try to call but my house is a dead zone. Go back to my room, get put thru to the robot answering machine because its the general number. Not a callback number. Fuck. The robot then hangs up on me saying theres a high call volume and to call back later.

But my appointment is now! I call again and get hung up on. I call again and finally get put on hold. This is like 20 minutes after my appointment time because it takes like 7 minutes of talking to the robot to get put into a call. So im on hold, i hear the landline so i rush downstairs to try and get it again but im too late (probably a robo call, we get a lot). There was no new message, so i stay on hold, where im expecting an 80 minute wait time.

Completely fucked up process when i had an appointment scheduled! I shouldve been able to call the worker back on the available phone.

Anyway. Im dying in pain and sobbing on the phone and end up having to sit on the kitchen chair thats hard wood because i got reception in there and i wanted to be closer to the landline just in case. Im sobbing for like the first 2 hours bc of pain from exterting myself rushing around the house. I try sending off a message on the online portal. But its like 'we'll get back to you within 5 days' lol.

My battery gets low so I risk bringing my phone to my room to use the bathroom and grab a charger, take off my dental trays (more pain) so i can eat and drink something. More pain when i get back downstairs.

Im on hold for longer. So i start looking for someone higher up to pester because the whole situation is fucked. Around 3 hours on hold i send off an email to someone whos the director of that org at the county.

Its at this point i realise i might be racking up a huge phone bill, so i start telling myself 'ok sunk cost fallacy this isnt worth the wait' and i start trying to log back into the portal (which id already been doing like 20 times already this day) to request a new appointment. Then the portal keeps logging me out as soon as i log in. And i cant reset my password or do anything.

Im about to give up, going nuts after hearing the same note played over and over on the hold music. And someone fucking answers the phone.

Ho lee shit. I couldnt believe it.

A 4 hour hold that actually produced results????

Apparently all their systems are down and the worker was like 'okay yeah youre gonna be the last person i process today i am not able to access anything right now' and even had to do some stuff manually, but my case is renewed and everything should be settled now

So yeah that was over 4 hours of torture being in the uncomfortable kitchen for so long, when i WAS prepared for my appointment ahead of time. Ugh. I shouldnt have to hurt myself to get this done, but no one else was in the house to catch the landline for me, and i didnt know i could get reception in the kitchen.

(Kind of worked out tho bc i wouldve had to hang up if my doctors appointment today didnt cancel, and also i wouldve hung up if the online portal functioned)

The sad thing is im not even done. i gotta deal with another appointment tomorrow in another town. (Already had to go out of town on tuesday for the teeth aligners/tmj appliances), like the car is not comfortable for my injured back lmao

I dont think the appointment tmr is anything big its prob just a check up and to renew meds, but getting there, early in the morning, is gonna be fucking hard. I doubt this doc will do anything for my back or regular level of chronic pain, but im gonna make a big stink about it because i havent stopped being in pain for like ever, and the past month has just been so fucking hard on me with trying to help family do labor intensive stuff (which is probably why my back got fucked and gave up on sunday)

It really fucking sucks being in chronic pain and no doctors wanna do anything to treat the pain. Ive already been on every type of antidepressant and none of them helped my fibro or depression. Ive actually felt a LOT better since stopping them last winter. But im still in a lot of pain all the time. I dont wnna be like 'give me painkillers' but... give me painkillers. I was so comfortable when i was on them regularly in the past. And then the whole opioid crisis thing happened and now no one gives them to me except when i had endo flare ups (which. Lol. They barely do anything for endo pain. Which is why i was so surprised they did anything at all for my back pain when i took one on sunday!) I have always been responsible with them and always took the lowest dose (cut them in half back then) because i dont like the feeling of painkillers lololol

God tho this back pain... on sunday it was so humiliating, i kept getting stuck where i was because the pain was so bad. Even just lying flat on my back was excruciating. I was Almost at the point where i wouldve needed help to use the bathroom. Even now, while my back is much better (still terrible tho) and with painkillers, i can barely twist to grab toilet paper or reach to dry myself. It fucking sucks. Getting clothes on and off? Sucks. Especially reaching to get my feet out of pants or socks on and off.

You dont realize how much you took for granted until you struggle to do basic daily movement. I thought i was doing so well too because ive been lifting weights since februrary! Just arm workouts tho. Was doing situps until i had another endo flare up in spring. I always forget how bad severe pain situations are, either with an injury or my endo flare ups. Im living in constant fear of the next endo flare up and that sucks too. My current back problem is like, spikes of level 10 pain with movement. The endo flare ups is sustained level 10 pain. So theyre not even comparable but its still super severe.

Anyway. This has been super rough on me. Especially the added pain and overstimulation of the new back pain, and now the constant pain and headache from the teeth aligners, which is another thing im super scared about. What if it ends up making my jaw worse? What if i pull out a tooth? God just prying them off my teeth is like getting teeth pulled it hurts so much. Im like crying when i have to take the bottom one off, the hook digs into my gums and then when one side comes off its excruciatingly stuck on the other side. Literally feels like teeth being pulled. Im surprised my one crown is still in place (ive been pulling from the opposite side to try and save it). And ive already lost a bunch of the tooth spikes they added to keep the aligners in place, but the office is like a 2 hour drive away so i cant just go get the spike replaced. I dont even have a car or license i have to coordinate with family lol. And the brand is like so new theres no online discussions about it so i cant even commiserate or see how people manage to cope with this level of constant pain from the trays, pulling them out, or the extra large bite guard i cant even close my lips around at night. My teeth are so crooked i cant even tell if its in the right placement bc my teeth dont fit in the bite guard tray. So lol. Im trying.

So yeah i dont have faith in my doctors im scared starting treatment is just gonna make things worse especially because thats been the case my whole life. Ill try to get treated for something and then it reveals or causes something much worse i need to treat. But im trying. Its just hard when i have to treat so many fucking illnesses all at once, and theyre all super painful.

Im fucking tired. Want this week to be over. Want to just sleep, but i cant even do that without being in excruciating pain every time i try to move position. Life rly sucks for me rn.

So thats my vent.

Oh yeah, also dermatillomania has been severe lately too lol. So i look a mess but thankfully my lips get covered by my mask. I was so scared the tmj doc was gonna comment on it but i accidentally forgot to take my piercings out before the appointment so he ended up making conversation about those instead of the glaring wounds on my lips and fingers. (He did notice my bandaids on my fingers lol)

So yeah. Send prayers and gay vibes my way pls i rly need it. Fffff time to go cry and put my trays back in

[skuldsbane]

I may be in trouble

I’ve not been saying much, because that’s generally not my way (if I can help it). There’s been mention on my discord, and the people there have been incredibly supportive. But I’ve not said much here.

Today I can’t even knit socks. Not because I’ve forgotten how, or because it takes too much brain power, or my hands aren’t working or anything like that. It’s because there’s something very wrong. We don’t know what it is yet.

Pinning it down is going to be difficult at best. It’s completely inconsistent, so being able to get a diagnosis will be... something less than straightforward. We think it started when I was put on one medication and taken off of another a week later. (The doctor who removed the medication never bothered to ask why I was on it, whether the numbers in the blood test should be slightly high for a reason, etc. He just decided I didn’t need it anymore. He’s also not going to be getting any more referrals from my primary care doctor’s office anymore.) The effects of the added medication were not exactly welcome, but expected, and I had started evening out. Then the other was removed and the world went sideways.

They put me back on the one that was removed, and took away the new one. But that’s been two weeks ago and there has been no significant improvement. There are appointments with various specialists scheduled for the next month and a half to see if anybody can figure out what happened. I’ve been put on medical leave from work until the end of August - and thank goodness for short term disability insurance, but they’re not paying 100% pay rate for that full time.

I’m sleeping between 12-14 hours a day, and am still exhausted. A train of thought will board at the station, and I can hold a brief conversation, but somewhere something just breaks down. Out of nowhere the thought just disappears - sometimes mid-sentence. Or partway through a word. It’s just gone. I’m unable to do much of anything today because of dizziness and mental fatigue. I can’t even go lay down and take a nap because I was able to strip the bed to wash the sheets (for the first time in over a month) this morning, but physically can’t put other sheets on again.

Why am I telling you this?

Well... Because I miss streaming. I miss sharing crafts, and playing video games, and just hanging out. Even if only one or two people would show up to watch, it helped me feel less alone. That’s a difficult thing to face when necessity means you can’t see many people.

Because I had planned to try to stream today, even if it was for an hour. Maybe two. Since it’s nearly impossible to keep focus and keep up enough energy to do anything for much longer than that. Even without the energy output of streaming, the most I’ve been able to stay awake at a stretch for weeks is about a 6 hour stretch.

Because I want everybody to know I’m still here, and still fighting, even though it’s hard.

So. There we are. I’m doing what little I can. Part of that is trying to figure out pricing for quilted coaster sets, since that’s something I can work on (almost brainless) for a couple of hours at a time on most days. And with the summer months here, and the US turning into a red, white, and blue smear... there are some sets in that color scheme which will be going up for sale as soon as that pricing gets figured out. (Then Halloween ones, and Christmas ones, then probably more Halloween/goth ones because that’s my jam.) Part of that is trying to use what little brain power exists to deal with insurance companies. And part of that is watching terrible youtube videos and staring off into space. It’s a rough thing to do, but somebody’s got to.

[cakesexuality]

8 months Lupron, 1 month add-back

I've discovered that I'm now slowly growing a very small amount of dark facial hair that isn't super visible but I'm p sure it wasn't there before, and I mean if you're hoping to do testosterone later on or if you're using testosterone as your add-back then this is probably a desirable effect for you, but I'm using estrogen and progesterone as my add-back for a reason lol

(I didn't know this was something that could happen!! Bc it turns out that it's not about your testosterone on its own but your testosterone in proportion to your estrogen and my testosterone has hardly budged while my estrogen has gone way down, and I'm still working on how I feel about this but it might be helpful info for someone else)

I don't think my body shape has changed at all, since I feel like my fat has redistributed since starting Lupron, and I know for a fact that my bra size hasn't changed either, but it can take a few months to begin to see those sorts of changes with estrogen

Progesterone helps with my digestive issues but the two days on, two days off with Jencycla is causing some :^) flip-flopping of symptoms and I need to talk to my gynecologist about that, like if I could do every-other day to help even it out, although this is preferable to when I was on Depo and it would wear off after a couple months and things would get worse for weeks on end instead of only for like... half a day

Ever since my 2nd shot (my 1st 3-month shot that I got in October), my site (left arm) keeps getting a lil bit sore on and off when it shouldn't be even though that's never happened to me with stuff like Depo-Provera and flu shots and even my COVID shots stopped hurting after the first few days, and I had pain go down my arm when she did my most recent injection (April) which also has never happened to me before when getting any sort of injection, but I have muscle and nerve issues in my arms due to scoliosis so I think I'm gonna ask if we can try a different site like my thigh next time (July) so we can see if it's actually from the Lupron or if it's only from my shoulders being fucked up (or even if my body is just angry at me for always using the same site!!)

(I think I had mentioned that my arm kept getting sore in a previous update?? But I'd been spending a lot of time at a friend's house around that time where the way I sit on his couch puts weird pressure on my site so I thought it was from me being stupid and sitting wrong, but I haven't been to his house in a few months now and it still happens so it's probably not actually that)

I said last time that we weren't sure if I would transition to doing my shots at home bc I don't have the pain that I did when my Depo would wear off, but bc I've been having to go to so many appointments for other things, doing my shots at home might help take stuff off my plate

I still haven't had a consult with the anesthesiologist to talk about laparoscopy bc I haven't heard from anyone, I don't know who the doctor is so I can't reach out directly, and I called my gynecologist's office last week to ask if they knew what was up with the referral so I could maybe get my consult booked, since my gynecologist was hoping to have the surgery done before my next injection, but the receptionist doesn't know who the anesthesiologist is either, so she was gonna talk to the gynecologist and get back to me

[lunatasticdinoface]

the exact same issues were present in denmark until like 2019 (and still are, to be honest)

forced sterilization for trans people ended in 2014.

there was outcry for trans healthcare reform, as it was linked to the psychiatric sector until 2019, but all the psychiatrists asked the same insane questions of "did you play with dolls or action men as a kid" "did you like rollercoasters as a kid" "did you ever fantasize about having sex with your own mother" stuff like that.

these psychiatrists work at sexologisk klinik. (sexological clinic)

in 2019, they reformed it to be under the medical sector instead. moved the clinic to another building, center for kønsidentitet. (center for gender identity)

so doctors run it now, but you still have to speak to psychiatrists for a year or two before you start treatment. so they need to borrow some psychiatrists from somewhere

in their infinite logic, they brought over the same psychiatrists from sexologisk klinik. the ones who were awful at their jobs in the best case, or maliciously transphobic in the worst case. because, after all, on paper, they were the current foremost experts on treating trans people.

so the reform essentially just moved the building over a few hundred meters.

i'd like to take you on the journey a trans person goes through:

you schedule an appointment with your doctor. if you do not say the right things, they can reject you because you didn't fulfil the criteria for referral. if you have been in any psychiatric treatment within the past 6 months you are not eligible at all.

you wait 6+ months for your appointment at center for kønsidentitet

you finally go in and talk to a person. you are not yet admitted for any treatment, this is just establishing a baseline of what you want. in this room, you are sat next to a clearly visible monitor that shows your deadname and assigned gender.

the person asks you some obviously important questions: how do you feel wearing gender-affirming clothes? how do you feel about your body image? how long have you felt this way? what treatments are you looking for from us? which name would you like to go by?

the last one really should have been asked -before- you go in, and there is an official guideline somewhere that says they should ask this, and refer to you only by your chosen name, but they do not

they also ask less obviously important questions: how often do you masturbate? would getting genital surgery affect how often you masturbate? are you able to masturbate to completion? what is your sexuality? are you sure of your sexuality? how are you sure of your sexuality? how many friends do you have? online friends do not count. have you told your family yet? why haven't you changed your legal name and gender yet?

i was told that, if you have not yet come out to your family, this is a significant factor in whether you can get admitted to treatment. because abusive families don't exist, right?

anyway, you're sent home after like 40 minutes of this. you are told that they will have a group meeting with doctors and psychiatrists where they will decide whether to go ahead with treatment for you.

the person you were talking to promises you that they will tell your side of the story at this meeting. but they often only write down the answers to their checklist of questions, not any extra details, so they risk forgetting most of the things you said, as the meeting is several weeks after your appointment. maybe months.

you are not invited to this meeting.

if the person forgets any important details, or does not speak in your support, it can affect whether you get admitted for treatment. you won't know if this happens, because you are not there

finally, you most likely get your rejection letter. it will cite vague and typically wrong things. and it'll deadname you one last time for good measure.

that's the journey of a trans person going through the trans healthcare system here.

my friend mentioned at her appointment, that she had known she was trans for over 10 years. she was rejected, because they did not want to risk treating an "episodic case of gender dysphoria". like it was just her brain going "oopsie doopsie we're trans for this month".

how'd they come to that conclusion? who fucking knows! you're not invited to the meeting to defend yourself from misrepresentation.

another friend of mine showed me her rejection letter. it deadnamed not only her, but another patient at the clinic. i share it here, censored, with her permission:

that's right, she got a copy-pasted response with ANOTHER PATIENT'S NAME on it.

(also, notice that they used the "episodic" term again, at the end of the second paragraph.)

anyway, icing on the cake:

you cannot appeal this decision. you cannot legally re-apply for treatment for a YEAR after this rejection. nevermind the fact that the rejection will likely leave you critically depressed and in need of either extensive therapy or anti-depressants. which forces another 6 months wait time to start psychiatric treamtent. and then forces 6 ADDITIONAL months wait time to even TRY re-applying for gender-affirming treatment.

so you're looking at a 1½ to 2 year minimum before you can try again.

you're locked into a brutally vicious loop of "you're too broken for us to treat you, currently," and "you're not broken enough that we want to waste time treating you"

and if you've got an existing mental disability, like autism? your chances plummet even further.

honestly, it's a matter of time before someone throws a molotov cocktail into that place and i would not blame them. several of the employees there genuinely deserve prison sentences. but there are no laws that say they are committing a crime.

my sources are anecdotal and i have no hard evidence. believe me or not. here's how people (patients) rate the place, if that matters to you:

and here are the closest things i can get to independent sources. they're from amnesty international, in cooperation with local trans communities.

(i know amnesty caught some flak recently, but these are among the only groups i can find that are actually politically fighting for trans rights here.)

(danish language only, 2016): amnesty criticizes the current treatment of trans people and recommends removing (most) psychiatric screenings: https://www.ft.dk/samling/20161/almdel/SUU/bilag/322/1758066.pdf

(danish language only, 2014): amnesty shares the experience of several trans people who were admitted to treatment: https://amnesty.dk/wp-content/uploads/media/2263/amnesty-transkoennedes-adgang-til-sundhed.pdf

some key points from the second link: none of the patients felt safe to be honest with their psychiatrist or doctor. none of the patients felt that the questions they were asked were fair or relevant. all of the patients felt that their boundaries and rights were violated.

sorry for the infodump but i have genuinely lost sleep from thinking about these things. not many things make me actually furious, but this always will.

most enlightened, most happy countries in the world, my fuckin ass.

(if i made any mistakes in the post i won't go back and fix them, i can't think about this anymore right now)

wish you guys would hate norway for the intense medical transphobia the way you hated swedes for not feeding people. we couldnt get a legal gender marker change without forced sterilisation until 2016. theres 1 board in 1 hospital in the whole country that's allowed to give HRT and they go by 1950s gender roles (i.e. if you're a trans man who wears nail polish, or a trans woman who wears pants, or you're gay, you're denied), and there's a minimum of a full year of psychological evaluations before any treatment is given (they ask helpful and relevant questions like "did you play with cars or dolls as a child" and "do you think about your parents when you masturbate"). anyway burn down rikshospitalet

[bortbytingen]

I'm currently suffering from Autistic Burnout and I've been trying what I can to get some kind of support for months. I wasn't sure if I should write anything about this here, but decided that I need to word some of my frustrations with being sent around and no one really willing (or able) to help.

26 Sep 2023 - Medicine review at my Community Mental Health Team (I'm diagnosed with autism, adhd and ptsd, and take adhd medications). This was my first time to this specific CMHT, so the doctor went through a questionnaire. While there, I mentioned to him that I've had many bad experiences in the past and that it takes a lot for me to open up. The doctor apologises and hopes I'll find it better here. When the question comes about hurting myself or self-termination, I'm honest and tell him about my exhaustion, decline in abilities and that I've had "dissociative walks" (I walk around and I'm aware, but also not, I don't feel anything and I can't control where I'm going and so on. I usually can't speak then either) and that one of them almost ended with me jumping off a cliff. To this, he just hummed and then continued with other questions. This plus some other things didn't make me feel very seen or listened to.

28 Sep 2023 - Appointment at my GP surgery to ask for help and get a sick note. The GP I met was great and seemed to understand me. She was the first one ever thanking me for giving her a letter and didn't mind written communication or my way of experience emotions in colours. I got a sick note and a date for a follow up appointment.

12 Oct 2023 - Follow up appointment. The GP I met was sick and I got to see another who literally made me cry. He might be good with other things, but he absolutely do not know how to handle autistic people with mental health issues.

16 Nov 2023 - Appointment with my GP surgery's Mental Health Nurse. The meeting in itself was ok. Got a referral to the Primary Mental Health Support Services and to some course by Mind. I was supposed to get an email with link and notes of what we had talked about, but I never did (and yes, I checked spam and that they have the right email address).

3 Jan 2024 - Triage appointment at Primary Mental Health Support Services (PMHSS). They are a resource aid and doesn't have any support themselves, but the triage nurse at least acknowledge that autistic people require adapted support and adapted therapy for it to work and not risk being harmful (first time someone ever admitted that to me). I later got a letter that summarised the meeting and with links to help: online CBT, online self-help resources and contact details to the Integrated Autism Services. Online CBT: My symptoms is too severe to be accepted and I was told to contact my GP for more correct support (so back to square one). Online self-help resources: Very basic. Nothing new and nothing geared towards autism. NHS Autism Services: Eventually e-mailed them, although they seem to prefer phone calls, which I'm unable to make. Another Autism Service: I've contacted them before and they never answered.

23 Jan 2024 - Meeting with Mind. They were uncertain what to do help me, so the person I met wanted to talk to their supervisor and then we'd meet the next week. Due to me later realising I already had two big meetings that week, I emailed and asked if we could rebook that appointment. I still haven't received and answer from them.

20 Feb 2024 - Got an email from the NHS based Autism Services (AS) and all it contained was links to National Autistic Society and to their own website. Both being places I've checked several times before.

As of today, 21 Feb 2024, I still haven't received any actual support. I have no one that can help me. I've tried to find an advocate, but have so far not succeeded. All that has happened is that I feel completely ignored and unseen, and I seem to keep having a decline in my life skill abilities as well as my abilities to speak. I live with a friend, but she isn't doing well herself and can't join me for meetings due to her working, but she does make phone calls for me now and then. Unfortunately, our relationship is a bit strained atm due to her new roommate (a friend of hers) that I don't get along with. AS was basically my last hope and that didn't go exactly well, so now I'm not sure how to proceed. I don't even know if I have energy to proceed at all anyway.

[three--rings]

NaClYoHo Day 1-2

So, I DO want to do NaClYoHo this year, as I really need it and I’m not Nanoing.

But this week has been Something since Monday was Mr. Ring’s oral surgery.  That was a Whole Emotional Day, and the next day also involved an early morning follow up appointment and it wiped me out physically.  My big accomplishment of the day was calling (THREE TIMES) and getting an appointment for myself with an ENT to follow-up on a referral from my PCP.

Day Two I went to said appointment, only to find out that I need to go to 4-5 more appointments before anything really gets done.  I was beat by the time I made it home and three days of doctor visits and driving have my back revolting.  On the plus side Mr. Rings did the laundry and took out trash, which at least accomplished something.

For today, I’m still feeling urgh in my back but I think my goal will be to gather trash from the back end of the house and maybe re-gather all the clothes I set aside to donate like a year ago and never did. 

[crippleprophet]

looking through your AS doc ive had a bit of an "oh" moment... it explains me and my symptoms so well. i dont really know what to do next, because i have a feeling going through the nhs is going to get me nowhere.

one question: do you know if theres a link between RA and AS? my grandmother had RA and i was wondering if there could be a familial/ genetic link or if its just chance

(thanks so much for your info on AS!!!!)

:)

thank you so much, i’m so so glad it’s been helpful for you!! i actually have the unique experience of going through both the us american healthcare system and the NHS due to studying abroad, so this was my experience:

US (note that i had a really good rheumatologist, my gf looked at reviews for every doctor in the state)

i & my doctor thought from my symptoms i had AS

diagnostic blood tests for ESR, CRP, HLA-B27, RF, ANA, complete blood count, complete metabolic panel

pre-medication blood tests for hepatitis A & C, HIV, tuberculosis

urine panel

chest x-ray

MRI of spine and SI joint

after getting these tests and while waiting on results, my rheum put me on 20mg prednisone daily for a week.

results: elevated ESR outside normal range, elevated CRP within normal range, low vitamin D. everything else was normal. negative x-ray; MRI showed herniated disk but not inflammation.

because my bloodwork showed inflammation and the prednisone helped my pain and fatigue, my rheum said my pain was definitely inflammatory, diagnosed me with AS, and prescribed me Humira. i started out with injections every other week and then increased to weekly after 3 months when i still had a lot of pain in other joints. occasionally received short-term 20mg prednisone daily during flares.

NHS

got set up with a GP in mid-September, had appointment in early October for referral to continue Humira. they referred me urgently and because i already had an AS diagnosis and had been on 20mg prednisone as-needed before, they gave me some prednisone for flares (although definitely not enough to last the wait time).

received a rheumatology appointment for February 4. they said they needed to confirm the diagnosis and put me on etoricoxib (NSAID not available in the US).

got switched to celecoxib (NSAID) after 9 days because the first med didn’t do anything and gave me bad side effects (GI upset, vertigo). new med was not very effective but helped slightly and didn’t give me side effects.

blood tests for CRP, HLA-B27, hepatitis A & C, HIV, tuberculosis. chest x-ray; MRI of spine and SI joint. same results as before.

i received a phone appointment in April and they said because there wasn’t inflammation in my MRI, i was in remission and any pain i was experiencing was “leftover” from previous inflammation, but i was no longer inflamed. this was obviously bullshit because i was in the worst pain of my life and wholly unable to function. they kept me on celecoxib and referred me to physical therapy, and didn’t do anything else. i survived until i got back to the US by taking prednisone that i acquired extralegally.

so you could either try to go through the NHS and be prepared to go private later if you didn’t meet their strict diagnostic criteria (they follow the NICE guidelines) or fundraise etc to go private without going through the NHS if the waitlist was too long. personally i think it’s worth considering going through the NHS until you’ve gotten imaging and bloodwork so you don’t have to pay for that, but it depends on your time-sensitivity. i also don’t know how common it is for private UK doctors to contradict the NHS in their diagnosis.

we don’t know enough about how AS and RA work to know how they might be connected, just that certain things (mainly rheumatoid factor versus HLA-B27) are associated differently, but seronegative RA is definitely possible as is HLA-B27— AS. as with the overlap between a lot of autoimmune diseases, some people have both AS and RA, although if the true rate of comorbidity is known i haven’t been able to find it. anecdotally my grandmother had RA, too!

thank you again and best of luck to you 💕💕 feel free to send me another ask or DM me if there’s anything else i can help with!

[dracox-serdriel]

Things you should be able to get with a single doctor's visit:

Prescription pain medication

Comprehensive pain treatment & management plan

A referral / coverage for unlimited physical therapy / etc. treatment appointments to address the underlying cause of the pain

A referral / coverage for unlimited psychotherapy to address your needs as a human person living with chronic and/or acute pain

Someone may not need a comprehensive pain treatment plan for an acute injury, but so many people get sent home with nothing more than "do the R.I.C.E. method and come back if it's still bothering you in two weeks" -- and of course pony up another copay with that next visit. Why do they need to come back? Why can't you be sent home with, "Listen, if this is still bothering you after a week or two of R.I.C.E. and pain meds, make an appointment with a PT for assessment." Or whatever the next step is after that. Why do I have to come back and be like, "You know the pain you didn't actually address two weeks ago? YUP, still there!"

Putting pain management behind a never ending paywall with hoops you have to jump through is just... never okay.

Also, pain management for things like root canals should never be absolutely limited to OTC medication just because the endodontist doesn't want the DEA crawling up their ass with a flashlight because they prescribed necessary pain medication. Nobody should have to deal with unnecessary pain just because an Rx is too much of a hassle for other people. If OTC pain management works for most patients, by all means, recommend it. But don't lecture a patient that they "don't need" (or "shouldn't need") stronger pain management meds just because most people don't need it.

Addiction is a serious neurological disorder that humanity has been treating like a behavioral issue for far too long. All these restrictions on pain medication aren't doing jack shit to stop addication - they're just tripping up people who need so-called "controlled substances."

It is actually way better for 100 addicts to get their fix on pain pills than a single person in pain go without. I call this the "Torture is bad" principle. You should be able to get the good stuff forever after a single doctor's visit. If you're worried about addicts fund rehab centers and needle exchanges instead of torturing people.

[whatshouldwecallchronicillness]

How does a person go about asking their doctor what kind of tests could be taken to figure out a medical issue? And how do you ask them what they tested for on a blood draw. Finally getting mystery bone/joint issues looked into but I don't know how to be assertive if I need to be

Great that you are interested in getting more involved in your care!

A doctor should absolutely be able to share their clinical reasoning in terms you can understand. In fact, anyone in healthcare should be able to explain what they are doing and why. There's things you can do to help get that info out of them.

A good place to start when embarking on self-advocacy is to have some goals. As an OT, I make my clinical and personal goals about function. Here's what my process looks like:

I had a goal to increase my sitting tolerance to unlimited during the middle of the day so I could do computer work and hobbies. Once I had this goal, I looked at what my barriers were. One was an obscenely low blood pressure. So when I went to my doctor I told him, "Here's what my sitting and standing blood pressure has been this week. It's preventing me from sitting up as much as I need to. How can we figure out why this is happening? What can we do to address this?"

( I could also add in my own opinion here if I have good rapport with the doctor. This can be tricky though, so proceed with caution. If you do add an opinion, it's great to phrase it as a question, "I've heard of a condition that causes joint pain called Ehlers-Danlos Syndrome. Do you think that could explain some of my symptoms? What other types of things are you looking into?" That gives you some agency, while still respecting the doctor's expertees. It makes them happy and happy doctors are better doctors, imo. If your doctor acts dismissive, it could be because they are a jerk, or it could be because they have excellent clinical reasoning behind them not thinking the issue is *insert diagnosis here* but generally don't offer that info to patients because they have enormous pressure to make their visits quick. Either way, you can get some good information with something like, "Can you explain why you dont' think it could be x? What other things are we looking into?")

Anyway...

My Doctor ordered some tests. I happen to be pretty medically literate, so I didn't need to ask what he was ordering or why, but this would be where I would ask those questions. They may look like, "What is an MRV?" "How would an MRI of my brain tell us something about low blood pressure?" I tend not to ask questions like, "What if all these tests are normal? What are the steps after that?" because that's just borrowing trouble from tomorrow. haha Those questions can come at the follow up appointment. The reason why I might ask those questions is if I would not have continued access to the doctor for some reason (financial, distance, appointment waitlist, etc.).

At the end of each appointment, I ask to summarize things and quickly go over the next steps. This makes sure we are on the same page and I know what my responsibilities are and what others' responsibilities are moving forward. That looks like:

"Ok, so we are looking at the circulation in my brain causing the low blood pressure. You ordered an MRI with contrast at X hospital. What are my next steps? Do I call the hospital, or will they call me to schedule and figure out insurance stuff? Should I see you again after you get the results?"

In my case, some tests results were normal and some were not. At my next appointment we went over the abnormal results and I asked what they meant and got a good explanation of the processes going wonky in my body that led to my functional impairment. My doctor suggested a referral, but if he hadn't, I could have asked, "What kind of doctor treats this? Do you have any recommendations?"

I saw the specialist and had a procedure to address the issue. My blood pressure is much better and I have unlimited sitting tolerance now. Goal achieved! Yay!

This is a medical fairytale and not what I can expect every time. But it's nice and neat, so it's a good example of the process.

It would also be really rare if you could jump into full advocacy mode right away. It can be pretty scary and intimidating! I still have trouble with self advocacy with some doctors. Write your goals and questions out ahead of time and bring them with you to your appointment. If asking all of them is overwhelming, maybe have one or two highlighted and focus on those. It will get easier with practice, but slowly and over time.

You got this!