Fox

Physical Nonhuman | it/its | Physically Disabled

[heartstonefox]

This is an Intro:

You can call me Fox. I use it/its pronouns.

I am a Red Fox that was forced into a human shape. The human doctors also mixed in some fae blood as well. The entire process was flawed and this form has many health issues and needs medical intervention from the humans to stay alive.

I use the clinical zoanthrope label to find others like me but basically I am a fox. My form may have been twisted and altered but I am a fox.

I am in my mid-20’s in case it matters to you.

[hellallamerican]

a ton of people have unexpectedly followed me over the last 2 days so here is my rent-lowering gunshot:

the american south is the most racially diverse and poorest region of the united states, and any political sentiment that treats the south is stupid or expendable is inherently racist and classist. a lot of y'all are racist and classist. the south is also the heart of american culture. argue with a wall. you cannot deny that everybody in the entire world does not emulate artists from atlanta. there is vested interest in keeping the south poor and uneducated BECAUSE this is the most racially diverse region in this country. if you actually give a fuck about progress, you would fight for the south, not mock us.

[wheelie-sick]

I have a hard time getting along with animal rights activists for a number of reasons but one of the big one is like.... I can get on board with better treatment of animals but you're also against animal testing for medicine which means you would literally rather I die than an animal be given a treatment that could save my life. ok. well. I don't think we're on the same team anymore.

[wheelie-sick]

this point makes people so uncomfortable too. they haven't put two and two together. they see the removal of animal testing as some nebulous goal that has 0 impact on anything except for the animals

when someone says they don't support animal testing for medicine my immediate response is "so you prefer that die of lupus?" and suddenly they start doing mental gymnastics to wrap their head around their philosophy and the fact that I am standing right in front of them and would be literally dead without animal testing.

they see animal testing as theoretically beneficial, not the process that every single medicine has gone through and has to go through. every single autoimmune disease patient, cancer patient, blood disorder patient, etc. that has survived has only survived because of animal testing.

and the situation gets realllyyyy uncomfortable when you point out the number of lives saved by animal testing.

[wheelie-sick]

People with a type of EDS or HSD that affects skin, what is the most successful method of closing large wounds on your body?

steri strips/butterfly bandages

sutures/stitches

staples

glue

something I'm missing here

I've never had success with any of these that I've tried

I've never tried any of these

I don't have a type of EDS/HSD that affects skin

Remaining time: 5 days 1 hour

some types of EDS and HSD make closing wounds difficult whether it be stitches ripping through skin or adhesives falling off prematurely.

if you've only tried one pick that as your answer if it was at all successful and no success with any that you've tried if it was not successful

feel free to tag your type of EDS/HSD and your answer

[heartstonefox]

My new heart med was approved by insurance and I took my first dose today.

Here’s to hoping it helps the heart rate without crashing my blood pressure.

[briarpatch-kids]

That stupid hierarchy of disability pyramid in the cripplepunk tag pisses me off so much. Physical disabilities are not more respected or treated better and they listed psychiatric disabilities as the ones with the least social capital. Apparently they suffer more than christ, even though I literally got denied the psych ward during a crisis for being too physically disabled.

[heartstonefox]

It’s not as severe as your experience but last time I was admitted to psych doctors kept insisting that the propranolol I was prescribed had to be for anxiety and they wanted to switch me to a different as needed anxiety med. They would not believe that I also had a physical problem.

Every time I have talked to someone who’s been in the psych system with physical disabilities they tell me similar things happened to them.

[heartstonefox]

Update on the Leaf Razor -

I had a much easier time using it with a thin shaving cream rather than the thicker foaming kind. I didn’t nick myself at all.

I’m using the Cool Iced shaving cream by Lush. I was planning on switching over to a more eco-friendly product anyway but I went ahead and made the switch earlier to see if it would help.

Don’t worry tho - my mom likes the thicker shaving foam so it will still be used just not by me.

[heartstonefox]

I was able to take a full shower this morning and I feel like a new person honestly.

I’m laying down in bed with a fan now but I feel much better.

[mxjackparker]

Don't leave your friends and even acquaintances to go to the hospital alone. If they don't have someone already going with them and don't explicitly tell you they don't want you there, go to advocate for them. Outcomes for sick people change dramatically when they have someone else there to observe doctors (making them know they can't get away with negligence) and note symptoms from an outside perspective.

Going to the hospital is scary and even someone totally unprepared to be a medical advocate or physical support will be better than nothing, purely from their presence. You can grab food, be there with your phone to search if theirs dies, go in search of a doctor, distract them from pain or discomfort... go with them.

[flowercrowncrip]

This disability pride month I would like the community to understand that Sometimes wheelchairs aren’t freedom.

Sometimes using a wheelchair means you can no longer get to the places that used to be important to you, and not because of man-made inaccessibility. I have sat with someone as they cried because they could no longer visit the place they had scattered a loved one’s ashes because not even the most expensive wheelchair in the world could handle the terrain. As much as I wanted to, my wheelchair meant that I couldn’t position myself in a way that would allow me to give them a proper hug. In that moment, our wheelchairs felt more like heavy weights than freedom.

And sometimes wheelchairs are like the legs of someone who can walk but would maybe benefit from a wheelchair themselves. Sometimes wheelchairs are exhausting and painful and you’re counting down the time before you’re able to be lifted into bed. Sure, like painful legs, you can do more with them than without, but constantly performing gratitude for something that hurts you is exhausting. And again, not because you need a better wheelchair, but because those are the limits of your body and the technology that exists.

Yes it’s important to challenge the idea that wheelchairs are always a tragedy. And yes, there are lots of people who have a positive relationship with their chair. But for a lot of people, including me, the pressure to love your wheelchair and see it as freedom is painful and feels like it erases huge amounts of my experiences with disability.

[heartstonefox]

Cardiologist appointment went okay. Trying a new med that isn’t a beta blocker but she is also referring me to a pulmonologist because apparently my breathing is abnormal.

I’d really like a freaking break.

[heartstonefox]

Also she redid orthostatic vitals and I had 30bpm increase going from laying to sitting upright not even standing. So it’s reasonable to assume my orthostatic intolerance is worsening.

[heartstonefox]

Cardiologist appointment went okay. Trying a new med that isn’t a beta blocker but she is also referring me to a pulmonologist because apparently my breathing is abnormal.

I’d really like a freaking break.

[briarpatch-kids]

I’m thinking about switching doctors because I feel like he’s been too quick to diagnose me with hEDS. The argument is that I have POTS and gastroparesis so my joint and muscle pain must be hEDS.

Everyone keeps telling me how hard it is to get a hEDS diagnosis and I should be happy about it but I just feel like something is wrong. Am I just being paranoid?

You are not. Part of an hEDS diagnosis is the ABSENCE of other explanations, last I checked. If they don't look for the other explanations how do they know it's not something else? I was actually a hEDS misdiagnosis case myself, turns out mitochondrial disease also explains pots and gastroparesis and I just happen to also be hypermobile.

There's not necessarily anything wrong with accepting it as a potential explanation and then keeping an eye out for symptoms that are not part of hEDS either though if that's the route you go. I was starting to have real bad muscle rigidity and spasms and was getting worse much faster than mechanical damage from hEDS could explain and thats what finally got me down the diagnosis path.

Be careful to get your info on EDS from clinical studies rather than asking other people because people will say so many things are a normal symptom these days and you're basically looking for symptoms that aren't actually normal for EDSers. I worry a lot of people are misdiagnosed and its becoming a "wastebasket" diagnosis like fibro and ME where it's a real condition, but doctors also put people they want to shut up and neglect because "oh it's not like there's a cure, you just have to get on with it." (What happened to me)

Even if that wasn't the case, I would still request that they rule out possible explanations with disease modifying treatments. The only thing they can do for hEDS right now is what's called supportive treatment: they can't fix your collagen, but they can send you to physical therapy to build muscle that supports your joints, treat pain, monitor your heart, stuff like that. Ruling out problems that have disease modifying treatments like rheumatoid arthritis, MS, stuff like that, WHILE ALSO PROVIDING SUPPORTIVE TREATMENTFOR HEDS IN THE MEAN TIME, is the best way to avoid long term damage if it does turn out to be something else and is what I would personally ask my doctor for even if it's just so I don't spend my life wondering if I could have had more.

[heartstonefox]

Was there something specific that made you or your doctor look at mitochondrial disease?

I’ve been doing PT and the recommended treatments for hEDS but my condition is continuing to deteriorate.

I’m really concerned that this is something progressive. I feel like every month there’s a problem with a new organ system. First it was the orthostatic intolerance, then esophageal dysmotility and gastroparesis and now my cardiologist is concerned about my breathing.

[heartstonefox]

Maximalism and Underconsumption Pt 4:

Take Care of Your Things-

Basically care for your things so that they last longer. There’s really no such thing as throwing something away - it just ends up somewhere else on the earth.

So if you’re able take care of your things. Repair that hole in your shirt instead of buying a new one. You can get fancy with it if you want or just keep it practical. Look up visible mending if you want to get some ideas on the things that you can do.

It does take time and energy and some skills. If you can’t see if there’s someone/an organization who can. I personally love the barter system and use it with family and friends when they have different skills. I think it should be used more often.

[growinggoblin]

Repairing is great! I'm not amazing with actually doing repairs of appliances (I bought a kit to repair my joycon six years ago. I still haven't fixed it), but I do try to repair any holes and other issues with my clothes regularly.

For holes and tears: immediately stop wearing it if possible, and don't wash it. Any movement will add more wear and exacerbate any damage. It's much easier to repair a small hole than it is to mend one that has grown bigger to neglect!

I'm no expert, but even with very little skills and time, you can give many clothes a longer lifespan :)

[differentlylimbed]

happy disability pride month to people who have never questioned if they're really disabled. happy disability pride month to people who never wonder if it's all in their head. happy disability pride month to people who can't be invisibly disabled even if they don't use a visible aid. happy disability pride month to people who don't question if they belong to the community. happy disability pride month to everyone who carries the trauma of spending their whole life as their parent's "disabled child". happy disability pride month to people with no interest in validating others. happy disability pride month to people who wish they could identify out of being disabled. happy disability pride month to people who don't even have the option of questioning whether they might really be able bodied

[illusion-of-death]

Happy disability pride month to people who aren’t permitted an identity beyond their disability. Happy disability pride month to people who are always used as an example to point out that “it could be worse you could be like that.” Happy disability pride month to people who have spent their entire lives as an afterthought. Happy disability pride month to people who are considered “too disabled” even by other disabled people.

[differentlylimbed]

congrats you're one of the only people to correctly interpret one of my posts

[cheese-whiz-barber]

Psychotic have the right to take 'too many' medications

Psychotic people have the right to not take their medications

Psychotic people have the right to self medicate

Even if it might hurt them

Even if it goes against doctors orders

[heartstonefox]

I will be going to the human cardiologist by myself next week. I am capable of driving and do so locally but going to the hospital on my own is very frightening. However the human mother should prioritize her father so this is something I must do.