#degenerative disabilties

[duality-disability]

happy disability pride month to those with degenerative/progressive disabilites:

-Those who know what their disability is and why its getting worse

-Those whos disability hasnt been diagnosed yet but the symptoms and degenerative nature of their illness is still taking effect

-and those who have to watch their bodies steadily decline while their healthcare professionals refuse to treat them (for no fault of their own)

-to the ones who are told they are too young to have their body declining

-'too young' to be using their mobility aids, or seeing certain specialists, or who notice they're the youngest patients in certain clinics by years if not decades

You deserve to be seen, and heard, and supported; You deserve kindness and respect and to be taken seriously about your medical concerns and the nature of your disability/ies

having a degenerative disease can be really fucking scary, I wish that tomorrow is kinder than today was.

[yamimichi]

Ya know, I can understand that some people who are disabled want to keep working. They don't want to apply for SSI or SSDI. And that's fine. More power to them.

What bothers me though is when they say things like "I don't want to live off the system" in a very derogatory manner.

Some of us can't work. And SSI and SSDI don't really give us enough to live on. So we need food stamps. Some of us rely on subsidized housing. We struggle to get through each month. And we don't need people being derogatory to us because of our disabilities. We don't need people acting like we're "less than" because of our disabilities. And we especially don't need this coming from other disabled people.

[melodymorningdew]

You have inherent worth.

[rat-kings-things]

I don't want to be stuck in this withering body my whole life holy shit

[wronggalaxy]

MY LEFT LEG PROBLEM:

I have an unknown condition or long-term injury that has impacted me for a few years, but has been steadily getting worse. In the past couple weeks alone I've become reliant on my cane 100% of the time, lost all physical abilities with my legs outside of walking(including running, sports, jumping, kneeling, walking quickly, kicking, etc.), and have become almost completely bedbound outside of school. I go to school, stumble through classes half awake and in indescribable pain, try and fail to eat lunch because the pain is so bad, go home and spend the next 12 hours lying on a heating pad until I have to do it all over again. I have intense pain 24/7 that randomly spikes from anywhere from a few seconds to hours multiple times every day. The pain comes from my knee, but everything below it hurts as well. I can't stand for longer than a minute and walk for more than 5 at a time, on a good day. Even after just 5 minutes of walking I can't move my leg for 10 plus minutes. After a minute of standing or 5 of walking(often times less) I will uncontrollably collapse and be unable to move at all for 30-60 minutes. Even after all that time I can still only move to go from the floor to my bed or a chair/bench if in public where I have to rest for longer. It's not a muscle or bone problem. My PT and GP think it's a torn meniscus(knee cartilage), but we won't know until I have an mri which my insurance won't currently cover because it's "not medically necessary". A torn meniscus is usually treated by surgery if severe, sometimes not even that much is needed. Since it's been at least 5 years since the tear happened(if that does end up being the problem), surgery might not even be an option. I need a wheelchair. I can't afford one, my house isn't wheelchair accessible, my school is 2 stories and the elevator is constantly broken, I wouldn't be able to ride the bus(my only way to school), where I live if you home school in high school they force you to get a GED not a diploma. If I get surgery recovery time is 6 months, so I'd have to quit the Speech & Debate team. If you quit for any amount of time you can never be on the team again. I regularly get called slurs and insulting nicknames, get fake claimed, have had people try to steal my cane, and have been intentionally pushed down my school's staircases multiple times. I tend to chew on my cane's handle when anxious which has gotten me sexualized, a lot. I'm also suspected for tendinitis in my ankle. The longer a torn meniscus is untreated the bigger the tear becomes and the more likely you are to develop degenerative knee arthritis. I'm also suspected for knee arthritis. Knee braces only make the pain worse and irritate my skin condition, leg braces don't do anything. My cane barely works anymore. I can't use a walker because of my back or crutches because of the school's broken elevator. My GP can only prescribe me ibprophen because of a lack of diagnosis. It does nothing. Nor does any other pain medicine I've tried for anything. I took a pill once that's so strong that it can kill you to take more than 1 a day. It brought me down to what able-bodied people would probably call a 'five'. That was before it got bad.

I don't know how much longer I can survive.

[melodymorningdew]

[melodymorningdew]

Grateful for the people coming to help me out today!

A couple of friends are coming by to help me clean and my mom's friend came by and is going to do all my laundry that backed up, so I'm freaking happy about that.

I gotta figure out a way to keep things clean, so they don't get this bad again, though. Trouble (my bf) and I were brainstorming last night about things that could make life more accessible for me:

-a couple of Roombas (one for vacuum one for mop)

-an Echo connected to a smart-home someday

-someone to cook a huge meal once a week that I can freeze and heat up

-someone to do a load of laundry once a week

-someone to occasionally do dishes or take out the trash every so often, so it cuts down on how many times I have to

-a shower chair

-an outdoor wheelchair for events where there is a lot of standing/walking

-a rollator or a walker of some kind to help me on bad days

-I need to create a capsule wardrobe so I can cut down on the amount of choices I have to make on a daily basis

-getting rid of all the junk I don't use

-a mini fridge/freezer and a microwave for my room

So far that's all I can think of... Anything else that has helped you that I could potentially add to the list?

[melodymorningdew]

It feels like I'm fighting a whole country by myself (I know I'm not). The amount of ableism embedded in this culture is heartbreaking. The hand that's supposed to help is clamped over every disabled person's mouth.

[melodymorningdew]

Oh my God there is nothing like a clean room+bathroom. Thank Jesus Christ.

[melodymorningdew]

My parentals are going to help me get my diagnoses, specialists, accommodations, and insurance covered this summer.

I do have to move back in with them, but it's temporary and hopefully it'll speed things up and take a bit of a financial burden off of all of us. Grateful for them.

Also get to see my doggo again :)

[melodymorningdew]

Haven't been able to move all day and I'm so hungry. I asked the 'rents if I could order delivery, but no response so far. Idk what to do. I feel like I keep asking one person for favors all the time, so I feel like I should leave her alone. Might just go back to bed bc idk what else to do.

[melodymorningdew]

But I don't want to have MS

[yamimichi]

I'm so tired of it all. I have various mental health diagnoses. I have various physical health diagnoses. And it seems like every time I turn around, something else gets added. It's getting to be all too much. I have too many specialists to keep up with. I really can't take this anymore. I'm trying hard not to break down and cry.

Yes, I'm currently feeling sorry for myself because I don't have all the medication that I need. I'm praying that Kroger has my prescriptions ready for me tomorrow.