#hidradenitis

[againstme]

so tired of posting about housing shit lol i feel like if i rot into the earth it is what it is. but i don’t have a place to stay past thursday again. going to a youth resource center to do a screening but i feel like nothing’s gonna happen in time and that my option is just gonna be shelters for the night and wandering during the day.

still having a chronic illness flare up. meds i was on was causing horrible side effects so my doctor told me to stop taking it and i have to wait until my appointment with a derm next week to start treatment, long process.

i feel so hopeless and alone and tired. i just want housing and i hate that this is so hard. i literally just want to work and have a place to sleep. and i don’t have the money for anything, let alone a hotel again. i don’t even have money for my chronic pain meds when i see my doctor because i’ve been out of work for the week and will probably have to be out this week as well.

why does it have to be so hard? i didn’t ask for chronic illness. i just want to live a normal life. i don’t have the support team or anything to have stability if i started the process of applying for disability if i stopped working. but i like my job, a lot. my body just hates me and i hate it.

anyways. venmo chaseallxn paypal.me/chxseallen whatever whatever i don’t think i’m gonna make it out of this one alive folks

[lady0mandy]

I feel like a fat oaf, waddling around oozing blood and pus. The medications I need are there, but insurance won't let me have them. They just dangle them in front of my face and then transfer me to another team member.

Do you know how frustrating it is to be transferred again and again just for them to send you back to the startup menu?

[lovelyv0id]

i was supposed to take my close friend’s engagement photos yesterday and bailed at the last minute because my autoinflammatory condition has been flaring up and was causing me so much discomfort and pain and i can’t help but to feel like a super terrible friend over it. there’s no other opportunity for me to take the photos for them in the remotely near future since one and then both of them will be moving out of state soon and she hasn’t talked to me since. a part of me feels like i should’ve just pushed through the pain and discomfort even though i likely would’ve been miserable the whole time. like, ever since my best friend passed away a year ago i haven’t really had much of any friends in my life anymore, so this longtime friend i’ve been close to for more than a decade now moving away so soon was already bad enough, but now i worry she wants nothing to do with me and won’t ever talk to me again even though that’s probably not true.

[pistachio-2]

its me i am friend

[navelgazed]

Mmm the hs cysts in my neck are having a severe time

[snowieluna]

Dermatologist put me on spironolactone for my hidradenitis. Took my first dose today and I've been kinda dizzy, but I guess it could be worse. I'm dehydrated by default, so maybe that's why the excessive peeing hasn't kicked in? I've had a can of ice tea, a small bottle of water, and a can of Coke today.

[astrayan]

Omfg my sister is so fucking cool

She’s launching a research project to raise awareness for Hidradenitis Suppurativa. Here is the project’s instagram and, when it’s ready, I’ll share the website as well ❤️

[bidhuan]

FDA Menerima sBLA untuk Bimekizumab-bkzx dalam Pengobatan Hidradenitis Supurativa

Majalah Farmasetika – Bimekizumab-bkzx (Bimzelx; Union Chimique Belge) adalah antibodi monoklonal imunoglobulin G1 manusia yang dihumanisasi yang menghambat interleukin (IL)-17A dan IL-17F. FDA menerima aplikasi lisensi biologis tambahan (sBLA) untuk bimekizumab-bkzx (Bimzelx; Union Chimique Belge) untuk pengobatan hidradenitis supurativa (HS) sedang hingga parah pada orang dewasa, menurut rilis…

[smoov-criminal]

happy disability pride month to those with conditions no one talks about, online or in general:

multiple sclerosis (me lol)

marfans

cerebral palsy

bells palsy

hidradenitis suppurativa

cauda equina syndrome

mixed connective tissue disorder

hyperadrenergic pots

non hypermobile eds types

stickler syndrome

mitochondrial disease

cystic fibrosis

sickle cell disease

myasthenia gravis

post-cholecystectomy syndrome

SWAN (syndromes without a name)

...just to name a few. i see you and you deserve awareness and understanding.

this list is non exhaustive, rb with other conditions you want to see represented!!

[ID: a post banner with dark red background and medium grey bolded text in the center. it reads “This post is about physical disabilities, do not derail.” On each side there is the dynamic disability icon, a gray symbol of person in manual wheelchair leaning forward with arms bent behind them mid-push. /end ID]

[kaijugifs]

[420spoons]

Meme painting of a woman adorned in royal clothing and jewels. The text over the image reads, ‘Disabled people, watching all of the accommodations that were created because of COVID get ripped away as part of able-bodied peoples’ “attempt to get back to normal.”

[hannahcrazyhawk]

We live in a world where chronically ill and disabled humans seeking help are treated like criminals. No one should feel like they need lawyers to litigate for their bodies and minds.

[spankoffski]

i headcanon ruth fleming as having hidradenitis suppurativa because yeah girl! sometimes pits really do be getting pus in them and that’s okay!

my chronically ill queen they could NEVER make me hate you ‼️‼️‼️

[awellboiledicicle]

Shout out to the chronic illness peeps who are bleeding from somewhere like 90% of the time and just barely not curled up in pain all day

And only not shout out to the ones that ARE curled up in pain all day because loud noises are the enemy of literally any rest. The shout out is there in spirit.

And to the poor bastards up all night with painsomnia-- may the universe conspire to knock you out. Amen.

[snarp]

May have just figured out why the lesions have been getting worse! I got the new bottle in early December.

TL;DR, sulfate-free cleansers tend to require more scrubbing for effective cleaning/rinsing. This isn't good for people with skin conditions that are aggravated by friction. Which is, practically-speaking, most people with skin conditions!

And since this cleanser is marketed towards people with "Itchy, Dry Skin" (major symptom of eczema), reviews since the formula change in November have been almost 100% negative. Most reviewers aren't sure why it's now irritating their skin, but they know that it is.

(Notably, in my case, hidradenitis suppurativa-affected hair follicles can easily become inflamed to the size of a thumbnail if the hair gets tugged on too hard. However, since HS also affects the skin's ability to fight off infection, failing to clean the area well enough is dangerous, too! Sulfate-free products are trying to kill me.)

[fefairys]

i love how every time i have a flare up i look up online what to do about it as if the answers will have changed. i’ve looked this shit up a million times already. i’m just like. maybe there will be something new that will work immediately and cure me forever! lol