Hello everyone,

I have a very important #mutualAid request for a dear friend.

This is the first time they've reached out for help: they're really struggling to survive as they wait for their application for disability benefits to be reviewed.

They been trying to sell art work and crystal collection, without much luck at all. They have no other income but this.

Any amount helps, and please do circulate this fundraiser, as the more it gets seen, the more chances of donations.

Here's where to send funds:

Cashapp is $Charlight
PayPal is @charbarley

Thank you so much for your help!

I've attached their #collage work and a picture of their precious #FurBaby.

#Queer #Autistic #Disabled
#MutualAid #Community #Fundraiser #LGBTQ
#CommunityCare #ChronicIllness #Artist #SocialSecurity #USA #COVID #covid19

Hello everyone,

I have a very important #mutualAid request for a friend of mine. This is the first time they've reached out for help-- they're really struggling to survive as they wait for their application for disability benefits to be reviewed.

They been trying to sell art work and crystal collection, without much luck at all. They have no other income but this.

Any amount helps, and please do circulate this fundraiser, as the more it gets seen, the more chances of donations.

Here's where to send funds:

Cashapp is $Charlight
PayPal is @charbarley

Thank you so much for your help!

I've attached images of their beautiful #collage work and their precious #FurBaby.

#Queer #Autistic #Disabled
#MutualAid #Community #Fundraiser #LGBTQ
#CommunityCare #ChronicIllness #Artist

Request for Mutual Aid
(Links at end of post)
.
My partner and spouse wrote this fundraiser for our family because I haven't the brain power to do this.
.

Please read, if you can:
.

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

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

I always felt that fat-shaming was far more sinister than just far shaming alone.

Fat shaming covers up the responsibility of public health officials to provide us with clean water, clean soil, and clean air. Fat shaming and disability shaming covers up what's really going on.

"PFAS are a family of ubiquitous synthetic chemicals that linger in the environment and the human body. PFAS exposure is linked to problems like cancer, obesity, thyroid disease, high cholesterol, decreased fertility, liver damage and hormone suppression, according to the US Environmental Protection Agency."

https://www.cnn.com/2023/07/05/health/pfas-nearly-half-us-tap-water-wellness/index.html

#WaterIsLife
#FatShaming
#environment
#ForeverChemicals
#water
#disability
#ChronicIllness

I need to stop doom scrolling as that won't help me heal 😭

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

They see you when you're out and about, when you've had the energy to dress nicely (or nice enough) and go somewhere. They see you socializing and bubbly and might wonder if it's really that bad, this #ChronicIllness of yours.

Hi, I'm Kiki, and I'm bad at intros. So, regarding #streams:

I mostly steam #FinalFantasXIV, #SuperAnimalRoyal, and #TheSims4. But often get dragged into #PlateUp, #Tekken7, and StreetFigher6.

However, due to suffering #chronicillness any schedules you see here will be tentative only, as I can't predict when I'll be well enough to play.

If you ever see me ingame, please feel free to say hi and/or poke me if you need another party member.

#intropost #vtuber #ffxiv #sar #ts4 #indievtuber

“Hold on, I think you might not be bi-polar. I’m going to get a second opinion on this and email you.” - my psych

Thank GOD. Bipolar meds always make me feel awful and I end up not taking them.

We’re having fun going through new meds right now until she can get a finger on it. Oh the joys of having a weird brain and being extra neurospicy.

#Neurodiverse #Therapy #ChronicIllness #T1D

A beautiful essay from my brilliant and kind colleague Heidi Harley

#chronicIllness #MS #linguistics @linguistics

https://medium.com/@heidi.harley/the-power-of-pos-or-how-my-ms-diagnosis-improved-my-life-or-lexical-semantics-relative-16fe222d7d4a

Got admitted to the hospital last week. Discharged after three days with a #PICCline and training to self-infuse at home. Currently I don't have as much fluid prescribed as I'd like but hopefully I can get that resolved soon. Doing much better in general though, despite the #CFS flare that is, predictably, hitting hard. My body is completely wrung out but my brain feels like it's finally awake again after 5 months of deep fog. #ChronicIllness #MCAS

It's "funny" how a few words can seemingly undo months and years of work on your #self-esteem, #self-worth, and #BodyImage. Writing this blog post was hard and I cried a lot as I wrote it. But I want to share it with the world anyway, hoping that maybe other people feel a little less alone because of it.

https://roadtomytrueself.wordpress.com/2023/04/01/on-body-image-issues-disordered-eating-shame-and-guilt/

#ed #EatingDisorders #DisorderedEating #Shame #Guilt #ChronicIllness #MentalHealth

This week my kiddo turned 21 and the day after was diagnosed with ME/CFS. This diagnoses just adds to a long list of disabling, chronic conditions. Even though the diagnosis doesn’t really change objective circumstances, it’s still hard to process. And getting it involved yet another medical appointment that felt invalidating and confusing. This kid has been through so much, has fought so hard, and I couldn’t be prouder of the strong, compassionate person they are. I’m sad for what they have to navigate in this world, and wish there was a better way to lessen that load. #ChronicIllness

As so many of us do, I struggle a lot with #ImposterSyndrome. It's one of the many things I work on in #therapy and bit by bit it's slowly getting better. I think? Maybe?

Either way, in my latest #BlogPost I wrote about my own experience with it, hoping that by reading it, others will feel less alone with their experience of it.

Here is the link: https://roadtomytrueself.wordpress.com/2023/02/24/imposter-syndrome/

#MentalHealth #neurodiversity #ChronicIllness #AuDHD #ActuallyAutistic #ADHD #HeardOfHearing

I did too much physically this morning, then too much cognitively this afternoon.

My brain feels like radio static & tv snow, with a catalogue of jukebox brain, of songs I either greatly dislike or loathe 😵‍💫

ThisIsFine.jpg

#ChronicIllness #ChronicFatigue

I've been sick. #LongCOVID in the form of #MECFS. Low appetite.

Had an appointment yesterday and learned why my clothes are so baggy: I've lost 45 pounds.

So here I am, the sickest I've ever been, having the first such appointment I can remember that didn't include a lecture about "calories in and calories out."

I was way healthier when I weighed 45lbs more. I had great cholesterol and blood pressure, and I could be as active as I wanted to be. But any real health concerns I had were dismissed due to weight.

Sigh.

#fatphobia
#ChronicallyIll #ChronicIllness

@rebeccajtiffany I'm going to add a few tags to see if they help: #ChronicIllness #ChronicallyIll #Mobility #Wheelchair

I can't help, but the comment about peppy nonsense resonates with me. Doctors are always sure that a walk around the block will cure me. Gee, thanks, a walk to the next room gives me chest pain, but go on.