#HidradenitisSuppurativa

Rebecca Esther (they/she)RebeccaEsther
2024-11-12

Why is it so hard to wrap a wound that's in an underarm/armpit? Especially as a fat person?

Advice invited and appreciated!! πŸ™
*about wound care and HS in general, NOT about intentional we*ght l*ss. Thanks.

2023-08-11

Request for Mutual Aid
(Links at end of post)
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My partner and spouse wrote this fundraiser for our family because I haven't the brain power to do this.
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Please read, if you can:
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We are a family of five living in Bath, #Michigan. All five of us are disabled in different ways, but we have found a way to get by and thrive for many years. However, one parent had a sudden severe downturn of health at the beginning of this summer that has left us unable to continue getting the income that we need. The parent has several chronic medical conditions, #HidradenitisSuppurativa , Elhers Danslos Syndrome, and #POTS, as well as #autism

An infection brought home from school in May has led to a cascading series of medical emergencies, which resulted in hospitalization and a surgical procedure for a deep abscess in the thigh which will take months to heal, as well as physical therapy. The parent was bedbound for over a month, causing me to lose my job. I will still be unable to get a job for several more weeks, but I will be able to resume substitute teaching once the school year begins again and the children return to school in September.

We have to get through one month without being able to work, and we are asking for help to support our family through this difficult period, so that the parent can remain on bed rest and fully recover from the medical procedure.

Our family's chronic health conditions require a very specific diet to prevent events like this. Our children also have many severe food #Allergies This makes us unable to utilize food banks. I have already tried going to many different pantries. There was only one thing that we could eat, and we could not choose what we got, so we ended up with a lot of food that we had to throw away. This is the first abscess like this that the parent has had in four years, and it came when we were low on food and had to eat something we normally would not.

We greatly appreciate any who take the time to read this. We are also unable to get basic household needs and are having to get by without many medications and other essentials. We have an Amazon wish list with household items that we need but will not be able to buy for several months, which you can find here:

#Trans #Disability #Disabled #COVID #Autistic #MentalHealth #Crisis #MutualAid #Fundraiser #CommunityCare #ChronicIllness

amazon.com/hz/wishlist/ls/2JWR

For direct funds here is our
PayPal link:

paypal.me/DFlexer?country.x=US

2023-08-09

After waiting 8 (!) Months for the appointment, I met my dermatologist today and YAY im gonna get my immunosuppressants again, starting tomorrow! πŸŽ‰πŸŽŠ
My autoimmune disease #hidradenitissuppurativa was flaring up badly since September, had to get surgery twice, was away from work for 6 weeks...
Let's hope this puts an end to this!

2023-07-25

What the hell? The Pads i need for my #hidradenitissuppurativa cost DOUBLE now than they did 3 months ago?!
😳😭😳

2023-07-18

@skippingmoonrocks

I have #hidradenitissuppurativa thanks to which I get abscesses all the time.
Most of them go away on its own, some unfortunately require surgery

2023-07-12

The scar of my last #hidradenitissuppurativa surgery is very swollen and hurts, and I feel pretty sick, like a flu. No fever though, but I kinda never ever have fever.
But I don't want to go to the doctor, because then they cut another fist sized hole into my butt πŸ˜¬πŸ™ˆπŸ˜ž

2023-07-11

My autistic grandfather dutifully cared for his wife (the grandmother I never got to meet) at the end of her fight with breast cancer.

Grandma Mary really wanted marijuana joints to cope with her pain, but the doctors only permitted her to use morphine (this was in the late 1970's). She couldn't administer it to herself so my grandfather injected it into her veins for her.

He told me this story one summer day when I was over at his apartment with my father. I was 10 years old at that time .

What prompted the story was grandpa Bill giving us a tour of his tackle box. I saw a syringe next to the rubber worms, and I asked what it was for. He explained that the fake worms injected with air made them seem life like to the fish, they'd wriggle about in the water, and were more likely to get a bite.

Then, he paused and told the story of that needle, and what it was originally for. After grandma Mary died, he kept all those remnant from that time, and everything seemed to have a repurpose . I watched him grimace as he took the morphine syringe in his hand and he angrily snapped it in two, and threw it away.

That was the first time I ever seen the gentle man look angry, actually, full of rage.

Only now, as I lay here in the hospital bed, after having a dose of Dilaudid, as the burning hot pain relief sears through my veins and breaks open my weary heart. I feel my grandmother, and I didn't have to meet her, to begin to feel her pain.

I feel grandpa's pain too. Repurposing the hurtful memories, the tools we are are actually given , when what we needed was something totally different. The autistic tendency to survive and "make due" with rampant unfairness.

#memories #pain #chronicIllness #cancer #autism #GoldenGeneration #millenials #thoughts #family #FamilyHistory #hidradenitisSuppurativa

2023-07-07

Again #hidradenitissuppurativa makes that I feel really ill and my whole body hurts 😭
I SO hope to get humira soon.

2023-07-06

My acne AND my #hidradenitissuppurativa are acting up right now, and now my body decided to add body aches to the mix... wonderfull 😭

I hope I get Humira again when I have the appointment in August, I can't take this anymore πŸ™ˆπŸ‘πŸ˜¬

2023-07-04

Cautiously "good" news:

My partner checked the area and redness has gone down. It is swollen but not as red. No streaking. Took my 12th dose of Keflex (40 doses total is the full course). Basically, the point at which I was going to go to the hospital is if there was no positive change in the direction of healing or it got worse.

To go to the hospital, we are looking for signs of worsening such as :

1) Increased redness + increased swelling

2) Red streaks moving outward to new tissue

3) fever

4) disorientation

The reason why it's wait and see at home, has to do with the fact that my immune system has been put to sleep from the Prednisone (why healing from infection has been so slow), and so I can catch a plethora of things at the hospital including COVID.

This could be so so so much worse,

KNOCK ON WOOD.

Please still keep me in your thoughts, I'm not out of the hot water quite yet πŸ₯Ί

Let's hope for reduced swelling by tomorrow morning 🀞

#HidradenitisSuppurativa #Immunocompromised #immuneSystem #cellulitis #ChronicIllness #Pain #anxiety #hospital #HealthCare

2023-07-03

Another coloring/activity sheet:

"All the feels inside
PAIN
you can write them here"

How you write them is up to you-- pain as an acronym, all the P, A, I, N words in each respective letter... I dunno, whatever you wanna do with it.

I'm going to be filling this out for myself later.

#ColoringPages #ActivitySheet #Pain #ChronicIllness #Emotions #HidradenitisSuppurativa #Lonely #Healing #FreeArt

A coloring activity sheet with big letters in the center that spell PAIN. Inside the letters of that word are lines to write words of the feelings in your particular pain. 

Above the letters PAIN it reads: 
All the feels inside.

And below it reads: 
You can write them here.
2023-07-03

Here's another #ColoringSheet
I made for anyone who wants it.

Some of the nuts have text bubbles, so you can fill in what you want them to say.

"Ahhh nuts"

"Is it that kind of day?"

#ChronicIllness #stress #anxiety #pain #HidradenitisSuppurativa #coloringPages

A black and white line drawing coloring sheet that's done using symmetry. Walnuts are on the bottom two corners, then there's hazel nuts above those, then almonds above those, then more hazelnuts, sunflower seeds in the middle, and an almond and two hazelnuts above those. All the nuts have tiny faces and some have blank text bubbles. Text at the top reads " AHHH NUTS!" 
at the bottom of the page it reads: "Is it that kind of day?"
2023-07-03

The world is too much right now. I been trying to cope with all the sorts of pain I got rushing through me today. It's wanting to come through as self-soothing art.

I made a coloring page for you to color, if you want to.

Remember, somebody loves you πŸ’œπŸŒ»

#Pain #HidradenitisSuppurativa #anxiety #fear #grief #ChronicIllness #love #coloringPages

Black and white line drawing coloring page of four sunflower heads, symmetrically placed: 2 are forward facing and two are side views. The leaves are sprawled also in a symmetrical way. A cloud frames the top sunflower head and rainbows pour forth from the sunflower head at the bottom. At the top it says: 

The sunflower always turns it's head toward the sun... 
May your head always turn toward kindness.
2023-07-03

Reflections on illness after showering this morning:
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So, I just finished showering and checking the infection and applying antibiotic ointment to it. I may need a script for diflucan filled. Yeast overgrowth also causes my #HidradenitisSuppurativa to flare, and I expect that my gut biome is taking quite a hit with this blast of high dose #Keflex.

I wish I could have many of the #dietary sources of probiotics that everyone in the #HS group recommends, but, I CANT HAVE DAIRY! ahhhh! Or #sugar, or a lot of the ingredients that are mixed in with those health beverages. I can't have #kombucha because of the #alcohol and yeast in it. I can't have any amount of yeast. I can't even have grain. Any kind of grain, except for oats in moderation (I make it plain with a bit of stevia -honey + a splash of oat milk).

I been eating the same food for breakfast since 2018. Oatmeal. Sometimes yellow fin tuna packed in olive oil.

My grandpa also had oatmeal for breakfast for over 50 years (he proudly would tell me). A small bowl of UNSWEETENED, UNBUTTERED OATMEAL without milk, a small glass of orange juice and a diner-sized mug of black coffee. FOR OVER FIFTY YEARS. He was in the best of health, but, he also didn't deviate from his "same foods".

My dad, in contrast, had the worst bowel problems and cysts that were so bad, I heard him howling in the bathroom with my mom when she would drain them herself (she was a nurse during Vietnam and delt with a lot of wound care). My dad chain smoked, ate foods he was allergic/sensitive to (for example, he couldn't have dairy but ate ice cream anyway), and he NEVER DRANK WATER, only soda pop and coffee! The only way my dad would drink water, is by mixing several tablespoons of sugar with it 😭 My mom would yell at him to stop eating all that "crap" because he would cycle through periods of illness that he would have to power through in order to go to work every morning at 4:30, as a dispatcher for HoneyWell.

This is all in inner city Cleveland, near the LTV steel mills, mind you. It was a toxic environment that all of us in Cleveland had to endure. Just about everyone around me had some sort of skin or metabolic issue. Oh, and kidney disease ran rampant in my neighborhood. (Cleveland Clinic did research on our population, btw, but hell if we actually got medical care for it.)

So, anyways, I just think it's awful how a lot of the info on HS and what causes it makes it seem like it's all within the power of the individual to control. That's only minimally true, when a lot of the factors are depending on racial disparities, socioeconomic class, gender status, marital status, genetics, and where someone lives, and more factors I can't even imagine yet.

#Industrialization #ClimateChange #Pollution are huge factors of HS, but no #Dermatologist will write about that.

Ok, I have to go now and rest more.

Thanks for making it this far πŸ’œπŸ™

Stressed Out Maikel πŸ‡ͺπŸ‡Ίmaikel@fedi.maikel.dev
2023-07-03

@Sensualme@strangeobject.space I do DRY intermittent fasting in winter. In summer it is too hot here. It helped with the worst bouts of #hidradenitissuppurativa .

Now, I just eat less but calculated to be more protein and almost zero fats.

2023-07-02

#HidradenitisSuppurativa anxiety is high in me today

I don't even think #anxiety is an accurate label for what I'm actually feeling, though.

It's like a slowly-descending terror, the sort that comes from insights on one's own current moment and feelings of inevitable catastrophe or doom, and the inability to escape or change its course.

For example:

a new bump or nodule felt under the skin while bathing can cause a nervous twinge in the back of my mind, like; what will this develop into? Then, after such a discovery, my logical course of action is to get out the anti-inflammatory ointments and the antibiotic creams and immediately apply them to the area(s) of the suspect lump(s).

I already use hibicleanse as body wash everytime I shower. #Hibicleanse kills normal #bacteria and #microbes on the skin, like #staph, #strep, #candida (yeast). To the average person with a healthy immune system, these microbes on small, balanced amounts don't trigger a response to go to 'war' from the #immuneSystem. My immune system however, is distrustful of whatever is on my skin, to the point that even the very texture of clothing can set it off, and my skin develops nodules-- not on the surface like #acne, which is usually a reaction to what's in the pore, oil glands, etc, but rather, a pocket of fluid forms in the nodule, sort of like a blister, almost, and it turns to pus (note: acne is plenty awful on its own-- I do NOT want to minimize that condition, my own brother had it awful).

It's also important to note that for every one with HS there can be different completely factors and triggers for each person, some being hormonal only, some environmental, or diet only or a combination of factors, including lifestyle, and what are considered #comorbid conditions and diseases that intersect with HS and or make it worse.

For me personally, it's a combination of environmental toxins, food and allergies and unregulated blood glucose levels, that and GI disease and Elhers Danslos Syndrome ( #EDS) and #POTS. Some of these intersect with #Autism and the nervous system which also are things that affect me and the severity of my conditions.

So, back to the HS infection risk--
Remember how I wrote that I must wash with hibicleanse all over my body?

Well, if I don't get rid of most of my skin surface microbes, the microbes could infect and culture the fluid-filled nodules and could develop (but not always in some people) a serious infection. This is where the slowly descending terror factors in. Once the process of infection starts, it's already in its path, and there are sometimes very limited ways to act, and every option puts me at the mercy of the medical system and the home environment I live in. Mobility disabilities and developmental disabilities complicate this all, because it takes much executive functioning to keep on top of skin care AND taking a bunch of pills that require different times and procedures.

I might edit this later, but I have to go an eat.
Thanks for reading if you made it this far

2023-07-01

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