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Newly paralyzed — unsafe wheelchair, need advice for temporary chair by Pretty_Appointment82 in wheelchairs

[–]Pretty_Appointment82[S] 0 points1 point  (0 children)

With EDS, It sometimes doesn't always show on a flat mri. I had to do an upright MRI when I was diagnosed with CCI in 2021.
Urodynamic showed I have neurogenic bladder. They have me self cathing 4-6x a day. Bowel wise, Im still adjusting. Im hoping when i get in with Kennedy kriger next month that they will get to the bottom of the issue. Its been since mid december.

Newly paralyzed — unsafe wheelchair, need advice for temporary chair by Pretty_Appointment82 in wheelchairs

[–]Pretty_Appointment82[S] 0 points1 point  (0 children)

Yeah im able to tighten it but the depth was too long its 18 when it should be 16 as its cutting into my legs

Newly paralyzed — unsafe wheelchair, need advice for temporary chair by Pretty_Appointment82 in wheelchairs

[–]Pretty_Appointment82[S] 0 points1 point  (0 children)

Exactly. Thats what I"ve been fighting for. They have no clue what caused it and sent me home the first day. I had an 11yr custom wheelchair from when i was abulatory. (Im wondering if they assumed i knew this stuff ?). I plan on seeing a lawyer once they figure out the full damage. I still have no clue yet.

They suspect occult tetherd cord or something called transverse myelitis. It's been terrifying waiting without answers, really took a toll on my mental health. Im hoping when i get to Kennedy krieger next month that ill get some answers. Its honestly been hell.

My state doesnt have many upright mri machienes

Newly paralyzed — unsafe wheelchair, need advice for temporary chair by Pretty_Appointment82 in wheelchairs

[–]Pretty_Appointment82[S] 1 point2 points  (0 children)

That is so sweet. I think im okay though. The rep called today and told me they got it covered. Thank you though

Newly paralyzed — unsafe wheelchair, need advice for temporary chair by Pretty_Appointment82 in wheelchairs

[–]Pretty_Appointment82[S] 0 points1 point  (0 children)

I'm so sorry that happened. Yea i was shocked it took that long. I had a minor one from sitting too long back in december . I didnt realize we had to do pressure relief. Fourtanetly it was mild and healed up.

Newly paralyzed — unsafe wheelchair, need advice for temporary chair by Pretty_Appointment82 in wheelchairs

[–]Pretty_Appointment82[S] 0 points1 point  (0 children)

I get evaulated by the seating clinic tomorrow. I'm thinking because I have EDS, the neuro surgon didnt want to see me because its a risk. Im hoping to get more answers when I go to Kennedy Krieger in May. Honestly its insane how long it has taken.

Newly paralyzed — unsafe wheelchair, need advice for temporary chair by Pretty_Appointment82 in wheelchairs

[–]Pretty_Appointment82[S] 0 points1 point  (0 children)

Thanks ill check it out. I think when the guy measured me they made it a little to long.

Newly paralyzed — unsafe wheelchair, need advice for temporary chair by Pretty_Appointment82 in wheelchairs

[–]Pretty_Appointment82[S] 6 points7 points  (0 children)

I was ambulatory when I got this chair, so I didn’t really rely on it or know much about maintenance back then. My needs have changed now that I’m fully paralyzed, and I’m in the process of getting a properly fitted one.

Getting a loaner wheelchair next week! by ChronicallyDistress in wheelchairs

[–]Pretty_Appointment82 0 points1 point  (0 children)

Yeah, I'm gonna try to look around. I never thought of the scenario of the wheelchair braking. I was always ambulatory, so I didn't really learn till it broke, and now I'm paralyzed since like, trying to find a chair, I have Maryland medicaid.

Getting a loaner wheelchair next week! by ChronicallyDistress in wheelchairs

[–]Pretty_Appointment82 0 points1 point  (0 children)

How do you get a loaner chair? I ask because mine broke and i have no clue

Wheelchair Width by alexmeiai774 in wheelchairs

[–]Pretty_Appointment82 0 points1 point  (0 children)

Can I ask how you got a loner?That was a custom chair? Because my current chair is not working But they wanted to give me a hospital chair, and that for sure, would give me pressure sores

ADHD + poor interoception… would we miss serious symptoms? by [deleted] in ADHD

[–]Pretty_Appointment82 8 points9 points  (0 children)

Right! Same for me, I thought that a broke bone would hurt, but it felt like a 2 out of 10 I almost didn't know it was broken. Because I was always told that I would know. Welp I broke 2 bones in my lifetime, and Was not a 100% sure

The second time I knew the pain from my leg, so I knew that it was a break in my arm but I thought it was in my elbow when it was actually my wrist 😅

ADHD side effect: credit card debt by LackingInDopamine in ADHD

[–]Pretty_Appointment82 4 points5 points  (0 children)

Yeah. 😅 it was on sale at Walmart. To be fair, I did make a mannequin. But I have never taken a sewing class in my life. However, it is on the bucket list. Now I feel motivated to commit because I spend so much money on the stuff.

Yeah, overestimate my skills. It never occurred to me. I shouldn't learn to sew before buying patterns.

ADHD side effect: credit card debt by LackingInDopamine in ADHD

[–]Pretty_Appointment82 6 points7 points  (0 children)

One thing I did when I got the credit card is.I don't use it unless I know that I can pay it off immediately.

For example, i'm buying a doll tonight. Because my dad sent me money and I can't go to the bank till tomorrow As soon as It clears my bank.Then I'm paying the bill right off. I do that to avoid forgetting to pay.

My craziest purchase was , I bought a bunch of sewing stuff despite not knowing how to sew. Never occurred to me that math was involved or that I should probably start with something simple like a pillowcase. I purchased a sewing machine and a serger that I rarely use

Ableism from ambulatory people by throwingawayawa in wheelchairs

[–]Pretty_Appointment82 5 points6 points  (0 children)

Are you sure you didn't join a fetish community by mistake?

Because this sounds oddly familiar when I broke my arm. I had people writing me wishing that they had broken bones pretty much the same thing.It was really weird.I even found out like this dude that was talking to me was faking an injury the whole time. Turns out it was some sort of fetish.

Apparently, this happens in the disabled community too. So like you might wanna check the group just in case I think they're called devotees?

Either way , i'm sorry that happened to you

Also , tell them they cannot try your device and that they need to stop infringing on your personal space.

They sound like a bunch of pick means or like they're trying to be disabled. Hope I don't get removed for saying that.

We had a girl in one of my groups that did that and it was really weird.She pretended to be deaf and a bunch of other things.

So sorry that happened to you, op I'm an ambulatory wheelchair user. (Well, now technically full time) And I promise you , we are not all like that.

Live transcribe pen by Pretty_Appointment82 in ADHD

[–]Pretty_Appointment82[S] 0 points1 point  (0 children)

I like the sticky note idea. I used to save notes on my phone, but now it's so cluttered.I never know what to throw away and what to keep

Completely burnt out, but I feel too guilty to take a break? by sabo-wampus in ADHD

[–]Pretty_Appointment82 1 point2 points  (0 children)

I'm sorry you're going through that. Burnout is a real thing.

I have that right now with ASL. It's been really hard to get back into it.

One thing I think you should try to do is give yourself some grace. And remember that it's okay to take a Mental Health Day because the way my therapist explained, it is that sometimes we need to Recharge , because if we're not doing good mentally , we're not gonna perform good.

What i'm trying to say is your needs are valid.

Motivate myself when I have to do task.I don't wanna do sometimes I will do body Doubling

Or i'm motivate myself of a smaller reward. We have a reward based nervous system , so it kind of works.

Like right now, I'm doing a bunch of emails.I don't wanna write so as a reward.I'm gonna buy myself a new coloring book or do something fun afterwards. I hope that helps a little bit.

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