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

https://www.amazon.com/hz/wishlist/ls/2JWR2Z5DYS03F?ref_=wl_share

For direct funds here is our
PayPal link:

https://paypal.me/DFlexer?country.x=US&locale.x=en_US

After waiting 8 (!) Months for the appointment, I met my dermatologist today and YAY im gonna get my immunosuppressants again, starting tomorrow! 🎉🎊
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!

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

@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

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 😬🙈😞

化膿性汗腺炎の塗り薬はどんな成分を使っていますか？あなたはどんな成分？今すぐ答えて自分の成分と他の人の成分を比べてみましょう！ #化膿性汗腺炎 #塗り薬 #アンケート

このアンケートとツイート文はBingのAIが作成しました
選択肢にない場合や期限切れの場合はリンク先のアンケートにお答え下さい
https://wp.me/pekwjr-16a
#化膿性汗腺炎 #化膿性汗腺炎の患者 #慢性膿皮症 #慢性膿皮症の患者 #塗り薬 #hidradenitissuppurativa

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

あなたは化膿性汗腺炎で苦しんでいませんか？塗り薬はどんなガーゼに塗って貼りますか？
普通の綿ガーゼ派👍特殊ガーゼ派👌機能性ガーゼ派👏それともガーゼは使わない派？
アンケートに答えて、自分の治療法を共有しましょう！ #化膿性汗腺炎

このアンケートとツイート文はBingのAIが作成しました
選択肢にない場合や期限切れの場合はリンク先のアンケートにお答え下さい
https://wp.me/pekwjr-15A
#化膿性汗腺炎 #化膿性汗腺炎の患者 #慢性膿皮症 #慢性膿皮症の患者 #ガーゼ #hidradenitissuppurativa

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 🙈👍😬

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.

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 🥺

Let's hope for reduced swelling by tomorrow morning 🤞

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

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

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

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 💜🌻

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

Reflections on illness after showing 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 💜🙏

#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

I decided to CW this post because it's got some "OUCHIE" pictures, and I decided to educate you using my own body (please be kind 🙏)

So, I have #HidradenitisSuppurativa. Feel free to Google it, but beware it's rough to learn about. I cried when I first researched it after getting dxed in 2010.

ANYWAYS:

notice how in the 1rst picture, I have it labeled "stage 1" , and I drew a white arrow that points to a red line, or streak, that forms on the skin. Usually in HS, the streak goes from one lesion/spot and travels to form another spot, before the two just merge into one swollen, red-hot bit of hell that just keeps expanding and spreading (people can lose affected body parts from it).

Notice in picture 2 it's labeled "stage 2"

This is when the two have merged.
This is the point I have buckled and chose to seek virtual urgent care, because it's very difficult to walk and sit in an office for 3 hours like this. I was able to show the doc this picture on the screen and they got the point real quick.

This CANNOT, should not be lanced, as there is no head anyways. It will just spread infection into the bloodstream and risk getting sepsis (that's happened to me before, in 2018, and I am LUCKY to be here!)

I was prescribed Keflex and an increased dose on my Prednisone. I already have an appointment with my specialist on the 12th, so hopefully it will be better or close to gone and we can decide on next steps.

I hope this can educate anyone who is unsure about what to do, or when to get care. I honestly shoulda gotten care right when I saw the line. That would've been even better timing.

I'm leaving this helpful, informative article about cellulitis here for you. It's got information on what it is, it's stages and symptoms and what treatment entails and how long to expect to be sick with it:

https://www.dispatchhealth.com/blog/how-long-does-it-take-for-cellulitis-to-heal/

I'll keep you posted on how I'm doing.
Fingers crossed 🤞

このアンケートと投稿文はBingのAIが作成しました
選択肢にない場合や期限切れの場合はリンク先のアンケートにお答え下さい
https://wp.me/pekwjr-151
#化膿性汗腺炎 #化膿性汗腺炎の患者 #慢性膿皮症 #慢性膿皮症の患者 #服装 #hidradenitissuppurativa

【化膿性汗腺炎】あなたはどんな服装が好き？ 服装が症状に与える影響を教えてください！ 超簡単なアンケートです！ ぜひ参加してください！ #化膿性汗腺炎 #アンケート #服装 #hidradenitissuppurativa

臀部にしこりや膿が…化膿性汗腺炎？それとも痔瘻？痔？原因や見分け方、治療法を徹底解説！放置は危険！重篤な合併症やがんになる可能性も！この記事を読んで、自分の状態を確認しよう！ https://wp.me/pekwjr-11b ↓↓↓

この記事と投稿文はBingのAIが作成しました

#化膿性汗腺炎 #痔 #痔瘻 #慢性膿皮症 #hidradenitissuppurativa

How many people with worsening #HidradenitisSuppurativa flares because of this polluted air?

My skin is weeping

I can't show you pictures because they are graphic and they are where the sun don't shine.

My lungs are a mess, my GI tract is a mess, my skin is scaring me.

FYI --
#KarlMarx had HS, and the worst places he had it was right up around his scrotum and cheeks. He was freaking miserable. There's lots written on his condition. He lived next to heavily polluted areas too.

Also, I wish the worst case of HS on the world's #Billionaires

#Marxism #Communism #industrialization #consequences #pain #pollution #ClimateCrisis #ClimateChange