sonny-ray-of-goth

[sonny-ray-of-goth]

#pcos #chronic illness #chronic pain #invisible illness #chronic fatigue #heds #hypermobile ehlers danlos #autoimmune #ehlers danlos life

[sonny-ray-of-goth]

I feel the need to clarify that penetration doesn’t just mean sex, not that OP was implying that, just cause that’s what I immediately thought.

It can also mean using tampons, which I can’t do because of this, and I just found out I have pcos.

Lease take care of yourselves lovelies!!!!

I wonder how many ppl with vaginas deal with vaginal atrophy without being on HRT but don't know and were given shitty little dismissals or incorrect diagnoses from their doctors

Bc I learned what it was from trans men and knew that's what I was dealing with, had a doctor check and say "oh yeah" and put me on oral estrogen which fucked me up, the correct treatment is vaginal estrogen cream or suppositories

IF YOU HAVE PCOS OR ANY OTHER HORMONE BASED DX and you have a vagina and penetration HURTS, please ask your doctor about vaginal atrophy. This is not something I was ever told about with any of my diagnoses but it's affected me since puberty. I use cream now a couple times a week and penetration doesn't hurt anymore and I don't struggle with dryness. This is a common symptom of having higher T in your body whether it's natural or due to HRT. This does not only affect post menopausal people or trans people on HRT.

Also atrophy can become bad enough that you deal with chronic pain constantly without penetration. Pain anywhere isn't normal and pain in your vagina at all is certainly abnormal.

#pcos #pcosawareness #chronic pain #chronic fatigue #chronic illness #transmaculine #transmasc #non binary #nonbinary

[sonny-ray-of-goth]

“You’re too young to be so tired”

Madame my brain is melting out my eyes from exhaustion, will you shut up

“You’re too young to be in pain”

I will end you.

#chronic illness #chronic fatigue #chronic pain #chronically ill #autoimmune #mobility aid #spoonie #chronically ill teen #heds #ehlers danlos #ehlers danlos zebra #ehlers danlos life #hypermobile ehlers danlos

[sonny-ray-of-goth]

[sonny-ray-of-goth]

10 children a day lose their limbs in Gaza. All hospitals in Gaza are basically barely functioning and the amputations are done in unsanitary conditions and without anesthesia

[sonny-ray-of-goth]

Help Me Get New Mobility Aids!!!

Happy Disability Pride Month! I initially wasnt going to make a post to try to get new mobility aids/tools, but I really need them, so what the hell.

I am a multiply disabled Black lesbian and I have been without proper supportive mobility since the start of the pandemic. I had many of my things broken or thrown away during this time period, and I thought I could go without but its been so long and I really cant anymore.

I need smart/ergonomic forearm crutches because regular forearm crutches wreck my fragile hypermobile wrists, I need braces for both legs and ankles, a shower bench and detachable showerhead. All of this combined is a bit over $550.

I REALLY need this, esp the crutches! My mobility and bodily autonomy would be GREATLY increased If I was able to get these items. I

CA: $sleepyhen

VN: wildwotko

Dm for P@ypal

TLDR?: Disabled Black Lesbian needs new mobility aids for increased mobility and autonomy.

[sonny-ray-of-goth]

Soooooooo

I’m making my official recommendation for the girl of the year 2025 (I know 2024 just started but I’m down a rabbit hole right now)

So a lot of us are upset about the fact that there’s a continual of variety in all of the lines that American Girls produces (other than World by us, which is currently one sale and I think that says something)

I know we mostly focus on race but I personally would also like to see so more disability representation (they don’t even have a walking stick or cane available)

So, my suggestion is an Albino girl of African descent with a beautiful Afro who is blind. She could have an interest in anything (I like the idea that she’s a writer) but maybe give her a story about how she stands against the ableism, racism and hairism of the world. There are still little girls who get sent home from school because of their natural hair.

I personally think this would be a beautiful chance to share educate kids of all walks of life about the challenges all types of people face.

Anyway. I was thinking about it.

(Unrelated but I’m about to snatch up an Evette and I’m so excited cause I love her design so much and am so excited to read her story)

#american girl #american girl dolls #girl of the year

[sonny-ray-of-goth]

I don’t think I’ve talked much about having a service dog on here, but maybe I should

Boom used to be my service dog, I got him the summer before my last year of high school bcuz I needed a nurse 24/7 to ensure I could eat/sleep/stay alive due to a recent very traumatizing event in my life and my mom came up with the service dog idea.

Getting him was hard. And expensive. No trainers were up to my standards. I, who could barely take care of myself, had to train my own dog. The problem is no matter how hard I worked, my own family or other trainers would ruin it all by messing up my commands, by letting my dog do things I had trained him not to do. It wasn’t training anymore, I ended up simply having breakdowns because everyone kept ruining my dog. People close to me thought they could be an exception to the rules I had taught my MEDICAL AID because surely my DOG would learn the difference between them and strangers.

Eventually I brought him to school. Printed papers explaining what a service dog was and how to behave around him and I plastered them all over the place.

People barked at him, petted him, tried to grab his attention.

His harness was hot pink, patches and signs on it that very clearly said “DO NOT TOUCH” and shit like that.

Someone defaced one of the papers.

Going to school was already hard, I could barely leave the house, my mom had to accompany me to the school doors every morning and then a social worker at school would greet me there and take care of me throughout the day.

I had my own locker at a floor mostly unoccupied so I wouldn’t see other people much and my dog wouldn’t be too distracted.

But it was still to much and I ended up dropping out four months before graduation.

I couldn’t leave the house. I had Boom but he wasn’t perfect yet. People kept ruining him.

But eventually I managed to leave the house. Go to a shopping mall from time to time with him to just walk and have fun.

Too many times people came up to me to tell me the gear I used was hurting my dog. Too many times people came up to me to tell me that their own dog died. Too many people came up to him and pet him without even acknowledging my presence. Too many people telling me they wished they could bring their pets anywhere. Too many people disrespecting me and my service dog.

I stopped going out. I stopped being with my dog.

All this stress and trauma drove a wedge between my dog and I. I consider him my mother’s dog now.

I had to learn to handle myself alone when I went out. It took me years to learn to go out by myself. Only last year I started doing that.

My dog doesn’t live in my room with me anymore.

Having a service dog did still save my life. But those around me ruined that. They made it about themselves. They prioritized my dog over me. My dog that LOVES working. If you tell him “do you want to go to work” chances are he’ll get so excited he will attempt to do a backflip.

We used to have a deep bond. That bond is now broken. People took that from us.

So I guess what I’m trying to say is:

Let people and their service dogs alone.

You are not an exception.

You are not special.

You are disrupting the dog’s training and distracting it.

You are endangering a human life because you can’t resist petting the cute dog.

This isn’t about you. This is about a disabled person trying to simply live their lives.

You don’t know what you’re talking about, your advice is unsolicited and lacks understanding of what the life of a working dog is.

Just leave us alone.

[sonny-ray-of-goth]

This rings true in so many ways

[sonny-ray-of-goth]

[sonny-ray-of-goth]

A struggle that's not talked about enough with chronic pain: wanting to sit a certain way (ex: criss cross applesauce, knees up to chest, on knees) but not being able to because of the pain and having to keep your legs straight out

[sonny-ray-of-goth]

Not my dad having called me a slur used for physically disabled people anytime I was injured or in pain during my childhood, long before I was diagnosed with my disability. I didn’t know it was a slur at the time.

Not me assuming that after I actually was diagnosed with a physical disability that he would stop calling me that out off respect or at least ask me if I mind. No one really cares about a child understanding words that are meant to be used as an insult because if they don’t teach them they’re an insult they think they can get away with it. That’s not good.

But I was having a bad pain day and my dad once again called me the G word, which not everyone knows.

He didn’t say it in front of anyone other than me and my mom, and he didn’t say it in an insulting way, however he has a tendency to say rude and cruel things with no intention of them being either (or with the intent but not caring)

I don’t actually have issues with the word itself on reference to me. Gimp(y) and Cripple aren’t words that I am afraid to use to describe me but I don’t need my father to assume I’m okay with using it as an adjective.

I wonder how he’d react to me referring to him as it? Another chronic pain haver who happens to use a cane on occasion.

Hmm

#chronic pain #joint pain #chronic fatigue #ehlers danlos syndrome #hashimotos disease #chronic illness #ehlers danlos problems #heds #hypermobile eds #possible fibromyalgia #fibromyalgia #cane user #walker user #rollators #rollator user

[sonny-ray-of-goth]

Hey y’all!

I’m about to make a website for an organization I’m creating to help those with hidden/invisible disabilities and illnesses.

I want to be able to make this website accessible for people with all types of conditions and wanted to reach out on here to get any suggestions from people with those types of conditions.

I also created an Instagram for the organization but it’s still in the very early stages so I won’t be sharing yet…

Let me know if you have any suggestions or questions!

#disability #physical disability #sensory disability #mental illness #chronically ill #ehlers danlos syndrome #fibromyalgia #Hashimoto’s disease #chronic pain #joint pain #chronic fatigue #hashimotos disease #chronic illness #ehlers danlos problems #heds #hypermobile eds #blindness #deaf #deaf community #hard of hearing #diabetes

[sonny-ray-of-goth]

So recently I’ve bee considering applying for a balance and mobility support/service dog, but I want a bit more information from people who actually have them and aren’t paid to give a good review

(It’s also alarmingly difficult to find organizations that train balance and mobility service dogs)

I understand the financial drain and the time you need to put in to make the team function properly. I understand that a service dog is considered a medical device and not a pet, but they still need love and support and breaks like all loving things should. I understand that given my allergies a poodle would be the best option but I could also push for a less common breed.

Does anyone have an info, tips or blogs to recommend?

I really want to be independent once I move out and I really think a balance and mobility support dog would be helpful.

#chronic pain #joint pain #chronic fatigue #ehlers danlos syndrome #hashimotos disease #chronic illness #ehlers danlos problems #heds #hypermobile eds #possible ehlers danlos #possible fibromyalgia #posturaltachycardiasyndrome #potsawareness

[sonny-ray-of-goth]

Crab Day

okay, so here's a new info post from the top.

the problem: tumblr is extremely extremely in debt. the current model is not profitable. this is why they are trying to turn the site into a shit clone of every other social media site, so they can attract new users and their money.

solution: not a ton of people can afford a long-term subscriptions like ad-free. however, many of us CAN afford $3 to inflict crabs on another unsuspecting user. (and those that can't, can still enjoy crabs everywhere)

the idea: in the grand traditions of mishapocalypses and goncharovs and tumblr users' obsession with [random inconsequential thing] Days, we create a fund drive/holiday on July 29th, dubbed Crab Day. buy your friends crabs. buy your enemies crabs. blaze posts. post memes. change ur icon. whatever. actually put your money where your mouth is and show @staff that there actually IS profit motive to listen to the current users about what we want this site to look like. (and yes, that means accessibility features too. we currently have zero leverage to demand these features. let's change that.)

i don't know if this will actually go anywhere. worst case scenario, a few of us have fun, tumblr gets a small amount of money, and nothing changes. best case though, we actually provide incentive to keep our stupid hellsite unique.

[sonny-ray-of-goth]

So I have a question for others with diagnosed hypermobile ehlers danlos syndrome

When I was diagnosed, the doctor said to me that there are no pain meds that can help with my pain that he is willing to give me because the only ones strong enough to work are highly addictive or can make you “high as a kite” in his words.

Has anyone else been told this? I mean it’s true low level pain meds don’t work on my joint pain but still, is there anything?

#chronic pain #joint pain #chronic fatigue #ehlers danlos syndrome #hashimotos disease #chronic illness #ehlers danlos problems #heds #hypermobile eds #disability #actually hypermobile #hypermobile problems #hypermobility #hypermobile ehlers danlos

[sonny-ray-of-goth]

Housing is a privilege.

“Fewer than 5 percent of units have the features needed to accommodate a person with moderate mobility difficulties. The percentage of wheelchair-accessible units is even smaller; less than 1 percent of all units are equipped with features that would allow a wheelchair user to live independently.”

Marriage is a privilege.

“The [SSI] monthly maximum Federal amounts for 2023 are $914 for an eligible individual, $1,371 for an eligible individual with an eligible spouse.”

Minimum wage is a privilege.

“Section 14(c) of the Fair Labor Standards Act authorizes employers, after receiving a certificate from the Wage and Hour Division, to pay special minimum wages — wages less than the Federal minimum wage — to workers who have disabilities for the work being performed.”

We still need to fight for accessibility and equity for all disabled people.

Despite the ADA, equity is still out of reach.