So I Have A Question For Others With Diagnosed Hypermobile Ehlers Danlos Syndrome

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?

More Posts from Sonny-ray-of-goth and Others

1 year ago
Big Shout Out To The Coalition Of Catholic Nuns Who Just Told The US Bishops To Stop Being Transphobic.

Big shout out to the coalition of Catholic nuns who just told the US bishops to stop being transphobic.

“As members of the body of Christ, we cannot be whole without the full inclusion of transgender, nonbinary, and gender-expansive individuals,” the letter reads. It goes on to argue that “we will remain oppressors until we — as vowed Catholic religious — acknowledge the existence of LGBTQ+ people in our own congregations. We seek to cultivate a faith community where all, especially our transgender, nonbinary, and gender-expansive siblings, experience a deep belonging.”

The letter also states transgender people are “experiencing harm and erasure” in various ways, listing daily discrimination, a groundswell of state-level legislation aimed at LGBTQ rights and “harmful rhetoric from some Christian institutions and their leaders, including the Catholic Church.”

Read about it here

1 year ago

Shout out to the girl in my class who loved to bring cookies and brownies and stuff to school to share with the class and when she found out I was allergic to wheat and soy she started bringing me skittles everytime she brought in baked goods so I wouldn’t be left out

Literally such a beacon of light, I love you so much

1 year ago

“Exclusionists are pathetic.” I absolutely love that last part because it’s refined nonsense.

Cripples are not “exclusionists” or “pathetic” for asserting that cripplepunk is for physically disabled people. That is literally just a fact.

Copy pasting your queer politics over every marginalized community you encounter is pathetic.

Calling people “exclusies” for experiencing traumas and oppression you don’t is pathetic.

Refusing to educate yourself is pathetic.

Lying about terms and a community created a decade ago by a dead person who EXPLICITLY STATED who it was for

is

so. fucking. pathetic.

3 years ago

My favorite LGBTQIA+ historical figure?

I am not sure.

I could list only a few of the top of my head in general.

I like Salvador Dali (asexual) for his art and his different view of the world but he didn’t really do anything for the community.

I read a while ago about someone who worked with Martin Luther King Jr, fought alongside him, who identified as homosexual but I can’t for the life of me remember his name. I saved an article about him somewhere but I can’t find it. If anyone knows who I’m talking about, help me find his name.

He would probably be my favorite LGBTQIA+ historical figure.


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2 years ago

Chronic Illness Tools Master post

Hi! I'm Laura. I am disabled with Ehlers Danlos, MCAS, and POTS. Here are a few mobility aids, physical therapy tools, braces, comfort items, and other things that I have acquired over the years that significantly increased my quality of life. I hope it helps someone.

Mobility aids:

Folding cane

Instant seat

Shower stool (nice quality)

Shower stool (cheap but works)

Physical therapy tools:

Exercise ball (small)

Exercise ball (large)

Exercise bands (with handles)

Yoga wheel

Cervical traction

Resistance bands

Theraband (get that GRIP)

Foam roller

Grip strength resistance bands

Adjustable ankle weights

Braces:

Neck brace

Wrist widget

Thumb splint

SI Joint Belt

K-tape

Knee brace

Wrist braces

K-tape (non-bulk)

Back brace

Elbow brace

Comfort items:

Heating pad

Neck and shoulders heating pad

Massage gun

Hand fan

Acupressure mat

Large Icepack

Leg pillow

Neck pillow

Bulk epsom salts (guess this could also go in the next category)

SALT:

Saltstick fastchews (orange and watermelon are my favorites)

Salt pills (that don't upset my tummy)

Cell Salts (these help my migraines)

Misc:

Quercetin (for allergies)

Neti pot

Bug bite thing

Hand warmer

Bed tray table

Toilet seat cushion

Yoga swing (yeehaw cowboy)

Cooling towels

TENS Unit

Huge Mason jar pitcher thing (revolutionized my access to water)

Pulse oximeter

*Notice* All of the above are Amazon Affiliate links.

As I am a disabled artist, I do not make much money. As I'm sure you know, it is very expensive to be disabled. These links wont cost you any extra to use, but I will get a small amount of the commission if you buy any of these items within 24 hours of clicking the link. Thank you!!!! (please boost this if you can, thank you, ily.) venmo

4 years ago

It’s come to my attest that I should probably post some of the art for Demons &Drag since I can’t focus long enough to finish the last eat chapter currently so

Here

It’s Come To My Attest That I Should Probably Post Some Of The Art For Demons &Drag Since I Can’t
It’s Come To My Attest That I Should Probably Post Some Of The Art For Demons &Drag Since I Can’t
It’s Come To My Attest That I Should Probably Post Some Of The Art For Demons &Drag Since I Can’t

In order we have Jem, Surri and Anitri


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2 years ago

I was having such a good morning.

I was volunteering at my favorite place to volunteer, cheering people on at a 1k and 5k for the holidays (for the holidays) and I was on my feet for three hours straight and I was okay.

But when they brought the volunteers back to home base, I stepped of them golf cart and my ankle shot pain up my leg.

God dammit.

So now I’m sitting in the ground waiting for my ride and trying not to aggravate my ankle anymore.


Tags
4 years ago

hello! just a lil smth, please don’t scroll!

tw // anti-asian violence

there’s been a fuck ton of aapi hate since the beginning of the pandemic and especially lately, with the georgia shootings today, and even the grammys last sunday

all this said i just wanted to share a few resources (none mine!):

- anti-asian violence resources (this resource is also linked in my pinned, it contains information, petitions, places to donate and a lot more)

- stop asian hate (contains petitions, places to donate, ways to spread the word and more)

- sites to donate to and share (if you have a twitter please consider retweeting)

- a cumulative twitter thread with a little bit of everything and more than i explained

+ stop asian hate gofundme

+ asian american resource center (an atlanta based foundation focused on housing and civil classes)

if you have any resources you wanna share reply and/or reblog and i’ll add it, and with that please share this with the same tags <3 sending love to my fellow aapi, please stay safe all of you and don’t be fucking racist :]

3 years ago

Would y’all be interested in a Suave and Cunning demisexual Villain x Himbo hero?

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sonny-ray-of-goth - Sunflower grunge
Sunflower grunge

I love all things frog, mushroom, rainbow high… I have Ehlers danlos syndrome and use both a rollator and a cane. Enby that is bad at making friends but likes to have them. I adore many cartoons but haven’t seen even more.

197 posts

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