#but if you take them and aren't low on them they are immunosuppressants (I am not a doctor though so don't take that as medical advice)

[hongtiddiez]

man last twilight hit me particularly hard today and i'm still crying after finishing the episode.

i spent a good chunk of my day at my specialist today and it wasn't great. my disease is getting worse. my weekly shots aren't enough anymore. i'm so tired and i can't stop fucking crying.

my immune system is fucked up, i produce too many white blood cells and those white blood cells have chosen to attack my skin. it leaves me with holes across my body - some of my wounds are now over a year old. when they heal they leave atrophic scarring - but they aren't even healing anymore.

the specialist gasped at the sight of me today. (i'd never seen her before, my state of being was new to her.)

"you're bleeding."

"i know."

"you're bleeding like, a lot."

"i know. i take iron supplements, it's okay."

"it's going to get all over your pants."

"it's okay."

"are you in pain?"

"yes. i'm used to it."

"are you in a lot of pain?"

"yes. it's okay."

she was so concerned, so alarmed, and i couldn't help but just smile and laugh it off. if i don't i'll end up like i am now, sobbing at my desk hidden away from my family because there's nothing they can do for me, they'll just hug me and say they're so sorry, they wish there was something they could do. but there's nothing anyone can do, this is just my life now.

"how often do you take your shots?"

"every friday."

"the recommended schedule for that medicine is once every two weeks"

"yes, they increased the frequency for me because i'm stage 3"

"and you never miss a dose?"

"no, i take it on schedule every week."

"i don't think it's working anymore."

i try to be strong about it, most of the time i am - this is just my life now, wallowing about it isn't going to fix it. i'm stage 3, the only thing that will fix it is a cure, but that doesn't exist yet.

i recently had to buy those washable period underwear because one of my year old wounds just won't stop bleeding and i'm so tired of washing the blood out of my pants. i've gotten so good at preventing bloodstains. (a mix of dawn dish soap, water, and baking soda as a pre-soak works wonders)

i bought an antimicrobial soap in bulk last week to prevent infection. it dries out my skin, but it's not as bad as the diluted bleach baths. i have to start using 10% benzoyl peroxide as a body wash. "do you have a fever?"

"no, i check regularly."

"your wounds are really deep, we're worried about you potentially going septic."

"i'm very careful and keep them clean."

i buy bandages and tape in bulk. my allergic reaction to the tape adhesives are the lesser of two evils. sometimes they get so bad i bleed, but it's just an abrasion. it's okay.

and now i have to take another round of antibiotics that make me nauseous.

and they're changing my medication. i'm 'lucky,' a new medication was approved by the FDA recently that shows good results in reducing the symptoms of my disease. but how long will it be before i don't respond to that anymore?

it's another biologic, an immunosuppressant shot, and i'm sure just like last time it's going to make me so, so sick. adjusting to biologics is so hard, it's not totally unlike low dose chemo (obviously there are differences) and last time it made me sick for weeks.

i don't want to be sick. i don't want to take these antibiotics that make me nauseous. i don't want to keep scrubbing the blood out of my pants. i don't want to use the soap that dries out my skin. i don't want to wear perfume to cover up the smell of my dying flesh. i can't even have sex with my husband. we recently went a year without having sex and i know he understands, he gets it, but i can't help but think part of him resents me. we got together when i was 22, when my symptoms were still mild, i got my diagnosis at 25. i quit my office job and lost my insurance. we eloped at 27 so he could add me to his insurance and i could afford my treatment. his family spent the next year asking why we were in such a rush to get married, we didn't know how to explain to them it was because my doctor was preparing to declare me completely disabled.

i don't want to be in pain anymore. it's been almost 10 years.

i'm okay, i'll feel better tomorrow, maybe even in a few hours, but i can see why people kill themselves over this. i'm so tired. i'm so defeated. i have to hope there will be a cure someday, something better than just pushing down the symptoms.

if you read this far thank you. like i said, i'm fine. i just wanted to get my thoughts and feelings out and i'm bad about talking to my family - they worry too much, pity me too much.

[tj-crochets]

Hey y’all! I have a dilemma. Warning: talking about medical stuff

1. I might be finally getting a diagnosis for the adrenal problems! 2. It’s because I tested low on one thing, but it’s not the thing I thought I’d test low on 3. If I have the thing that being low on cortisol can mean, I not only *finally* have a diagnosis after more than a decade, I get the good meds 4. The good meds (a replacement for a different hormone than the one I’m already on) will almost definitely help literally all my other health problems, and there’s a chance that if I take them long term, I might not have allergies anymore?* 5. the problem: stress raises the levels of cortisol. Testing low on cortisol is how I get a diagnosis. I need to not panic before/during this blood test, and it involves being in a room for an hour and a bit because they have to take samples at different times to see how I react 6. It is very very difficult for me to not panic, knowing that if I *don’t* test low again, I will not get the diagnosis, and without the diagnosis I do not get the good meds (because if you don’t have Addisons, long term steroids are Very Bad for you in several ways, including messing up your immune system)  7. but if I DON’T have Addisons, and I am on the good meds, my immune system will be messed up in the middle of the pandemic 8. so I am stressing about potentially testing low, getting a diagnosis, having it be wrong and increase my covid risk, while also stressing about *not* testing low and being left a medical mystery again after coming so close to finally getting a diagnosis. It’s been twelve years since the first doctor told me I had salt issues, and nearly a decade since they got bad enough to affect my quality of life severely. I really, really want a diagnosis.  9. Either way, I really really need to not stress so that my levels are accurate, whatever they turn out to be So, tl;dr: I am stressing, and, for medical test reasons, it is very important that I not stress out for the next two days (so, until 6/22/22). To help me not stress, I am asking today for fanfic recs, and if y’all can send me like cute animal pictures and/or quilt inspiration on Wednesday morning? I’ll post about the cute animal pictures/quilt inspiration request tomorrow night so I can look at them in the morning *one of the roles of cortisol, as I understand it, is helping your body process histamines. I do not have IgE mediated allergies, I have “excess of histamine” allergies, so if I can process more histamine I might, functionally, be allergy free

[queerautism]

Why are rheumatologists so often like that one ask (rhetorical).

Finding one that doesn't have nonsensical arbitrary cut offs for stuff and that actually listens to patients is so hard. I had to get my Lupus diagnosed by a freaking nephrologist after it had already really damaged my organs because the hospital rheum didn't listen and didn't even consider it or any other autoimmune the first time I ended up in the hospital because of it (I was "too young" and my facial rash "wasn't the right shape".)

Meanwhile the (weirdly good) nephrologist took two seconds to see all the telltale symptoms, ordered a biopsy, and boom. Guess what. Lupus that had become lupus nephritis. That didn't start that way for sure back when I first started having symptoms.

Now I have end stage renal disease, aka full kidney failure, and it could have been prevented if my lupus had been properly controlled.

And my experience with rheums hasn't really improved. My current one is overall nice and does believe I have the symptoms I list, but still doesn't fully consider patient needs.

She's still left me suffering at a low dose of my lupus medicine for weeks while we wait to find out if I'm even approved for funding and going to get infusions at all. Which supposedly is to help prevent infection and make sure I am well enough for immunosuppressant infusions, but uh. If I can't function, clean my surroundings or myself, and can't eat/drink because med doses are too low and my lupus is running rampant damaging my body again? That's not going to put me in a good place to be infection free.

Also good luck trying to get in touch without an appointment. And she's one I've overall had positive experiences with.

Tldr Fuck Rheumatologists. The good ones are supposedly out there but good luck getting an appointment if you aren't rich. The ones that have openings either don't listen to patients or they don't consider patient needs when making treatment plans. I know that's an overall doctor thing in general but like, I swear the bad rheums take it to the next level.

FUCK rheumatologists for real. I had one appointment after waiting about a year, it was five minutes and he literally did fuck all. I hate them so bad. Sorry you had to go through that, god that's so shitty

[torque-witch]

wait chemotherapy? aren't you just taking methotrexate? I mean, it sounds like it's being used to treat your rheum which is a common use for the drug. the way you're framing it just seems so misleading? it's like saying that I'm being treated for high blood pressure by taking Clonidine (a hypertensive med) but it's used to treat my ADHD, etc. I get how frustrating it is to not have any answers but there's no way this is helping (and it could be confusing for people who look to up to you)

Yes and no. I do get this point and I agree with it, which is why I stated low-dose chemo. Because in the prescription packet it says “only to be used to treat cancer and severe overactive immune system diseases” which in my personal opinion, means it’s some nasty shit. I am also on adhd meds for Crohn’s disease, so I understand off-label use - however this is directly label use. I have an overactive immune system.

If you want to categorize my response to my doctor blatantly not telling me what these meds were or how they work - he said “we don’t know, it’s like an anti inflammatory” - as dramatic, then be my guest. I had to find out that it is another immunosuppressant commonly used for cancer treatment, RA, and for inducing abortions after picking up my scrip. If that sounds as destructive as anything else I’m taking, then I clearly haven’t been paying attention.

I just don’t think I should be excited about taking something that makes most people throw up, gives them migraines, can cause infertility, cause birth defects, my hair my fall out, my liver has to be monitored. It’s not a pleasant drug.