#pyoderma gangrenosum

[fantailandfern]

Study day today.

I'm still getting over a cold, so I'm studying from home today.

Today's goals:

Finish up module on kaupapa Māori approaches to research

Start next module on intergenerational trauma in education

Start editing work so far and update portfolio

[batwynn]

So the dermatologist said it would take at least a month to know if I lucked out and the Humira is working again, or if I landed on the other side of the 50% and my body decided it doesn’t work anymore. But… I don’t know I’m supposed to tell? 🥲 It has always worked a bit slowly for me, from the first time I took it. I’ve also always had some break through PG wounds pop while taking it. I’ve currently got 2-3 wounds right now and I’m not even sure what to be looking for. This is not the kind of thing you can wait around forever for to see if it’s working, PG wounds can take off sprinting if they feel like it. I’m just. I hate this shit. Diseases with no money for research, and very few professionals who know anything about it. Having MULTIPLE of those is extra bullshit.

I’m a fucking zebra unicorn with a bunch of rural doctors who don’t even want to look for horses, never mind treat said horses.

[sodapuppers]

URGENT!! PLEASE READ/SHARE 🚑‼️📢

My parents have started a GoFundMe for my mothers medical expenses because insurance doesn't cover all of her medicines, supplies to wrap her deep wounds, or hospital bills anymore. My mother is disabled and requires constant medical care. I'm begging you to spread this as far as you can!! Even just sharing the link helps! https://www.gofundme.com/f/4hu3ma-uncovered-medical-costs?utm_campaign=p_lico+share-sheet&utm_medium=copy_link&utm_source=customer

[chronically-crying]

One time before I even got sick I said (mostly joking) to my mom and sister that the American healthcare system has a personal vendetta against me (I have now been cucked by blue cross blue shield, COBRA, PrefferedOne, and for both lifesaving and not strictly necessary medical things) and my sister's response was "IDK the American healthcare system hasn't been particularly kind to me either" (she had a broken leg that needed surgery but she had to come home and wait several days before she actually went back and got the metal screws in her leg that she needed for the bones to heal properly)

but joke's on her because no I have been 1) in preauthorization hell for HRT for 3 full months (my gender care doc had never seen it takes that long) 2) I had a full psych eval scheduled bc I suspect I have ADHD and a psychiatrist I saw was like "yeah you should probably get the whole deal" and it was cancelled the day before, 3) I got diagnosed with IBD, given 2 months worth of Prednisone and told "you'll see someone in 6 weeks" only for the appointment to cancel the day of bc I was 17 and they weren't licensed for peds, 4) I've been on 3 different biologics now for IBD, Remicade which barely worked, Entyvio which did not work, and now Stelara which is great. IF ONLY MY INSURANCE LET ME HAVE IT because reauthorization came around in March and it got denied and ever since I have been living on the edge of a Crohn's flare

BONUS: this isn't insurance related but I got a fancy rare skin condition called pyoderma gangrenosum (DONT GOOGLE THIS ITS HORROR MOVIE SHIT) which is heavily related to Crohn's but because of how it presents it doesn't totally seem like an autoimmune condition and I was treated for the wrong thing from mid-May to the end of July before someone went "have you seen a dermatologist yet? Bc this is definitely not an infection" and I basically suffered for 7 weeks for no reason

[02ofcups-archive]

tw for chronic illness, medical gore, and general venting about my disease under the cut 🤕 sorry mobile besties

last year i had open ulcers the size of baseballs on my body. they started off small like pimples and spread to like, huge gaping holes. no one knew what was wrong with me. for months i was going to the doctor every week to try a new treatment, while all the while the wounds spread and spread like my skin was eating itself. i had doctors, residents, and interns looking at my breasts and photographing them constantly, scrutinizing one of the parts of my body i already hated most without having a mystery illness eating me alive. the phrase “pyoderma gangrenosum” (don’t google images it) floated around a couple of times and after seeing horrific images of what this disease can do on the internet, i said “if this is what i have, i’ll kill myself. i can’t live like this.”

obviously i haven’t killed myself yet, but i have been diagnosed officially with PG. i was in remission for almost a year. my scars bothered me sometimes, and i got painful cysts in other places but they healed up just fine. i could move out of my family’s home. i could get a job again. now, i’m working all but full time and living by myself, and i just got my life back, which is why it’s all the more devastating and terrifying to see that one of my scars has dissolved into a gaping hole in my body the size of a coin. i had a huge panic attack about it at work and had to be sent home yesterday, and now i find myself calling in sick to a job i have used up all my sick days at (because i’m always, ALWAYS sick) to try to schedule an emergency meeting with my doctor. i can’t even begin to explain to my boss what’s wrong with me. how am i supposed to articulate that i have a rare, incurable, life threatening disease that nobody has ever heard of with a 30% mortality rate ??

i just needed to get that out. thank you 💕

[torn-and-frayed]

I know I don’t have a lot of friends here anymore. Most have either left the platform to go live their lives or others can’t stand me for one reason or another. Either way, it’s one of the only places I have to express myself without people I don’t want to see seeing what I’m saying. So here it goes.

I’ve talked about my struggles with Hidradenitis Suppurativa here a lot. I’ve had people tell me I’ve helped them to figure out that they have it too which is amazing. Mine is flaring out of control. It’s constantly leaving me with open wounds, bleeding, pain, etc. I literally asked myself how could it get any worse than this? Stupid question.

Over the last few weeks 2 spots on my legs that originally looked like mosquito bites have opened up into 2 incredibly painful, bloody, itchy, open wounds. My dermatologist is about 99% sure it’s another autoimmune condition called the pyoderma gangrenosum. I made the mistake of googling it and joining a Facebook support group. It’s one of the most terrifying things I’ve ever seen. I saw wounds where nerves and bone were completely exposed. This isn’t something I can live with. I’ve dealt with so many things. I don’t think I can deal with this.

My biopsy is scheduled for 7:45am tomorrow morning. Then in a few weeks I’m going to be tested for crohn’s. 70% of people with HS have crohn’s and a lot of patients with PG have crohn’s, ulcerative colitis, or rheumatoid arthritis.

On top of that, my dad was diagnosed with melanoma in his face and is having surgery Tuesday to remove it. The CT looked good and they don’t think it spread but it makes me so nervous. I need my dad around. He’s my best friend. My rock. I can’t lose him.

I’m so scared. And I feel like I can’t tell anyone because I’m always the strong one. I just want things to be normal again. I don’t wanna be in pain anymore. I wanna be able to go have drinks and dinner with @impalaimagining and @mrswhozeewhatsis again. I want @plaid-lover-bay25 to be able to fly out so we can all go to main event again. Right now I just feel like it’s never gonna happen.

[i-cannot-live-without-coffee]

I think pyoderma gangrenosum might actually be one of the most painful conditions ever.

[batwynn]

My dermatologist laughing when I told him taking a simple shower triggered my autoimmune disease to the point where I had 20+ blisters/potential wounds pop up and telling me to “be more careful” was my last fucking straw after years of his mistreatment and refusing to classify my disabling and chronic disease as a fucking disability.

Letter to the office sent with file request. Official complaint to the medical board drafted and ready to go.