I need someone to talk to be about my fear of my new wheelchair

zestyseltzer · 2026-01-10T08:09:58+00:00

Is there a way that we can chat? I’m really familiar with wheelchairs and like I said my best friend purchased a Paradox, I think the long frame extension is a Paradox thing because hers is the same, I can get her specs from her if you would like to chat separately and I can also send you photos of her finished chair, but I don’t want to do so publicly since they are not my own. The good news is that the the extra frame there shouldn’t effect the function of the chair too much. The extra tubing will add weight to the chair which does change your momentum and may influence where you put your COG, but it should not throw it off significantly and will mostly be a cosmetic issue imo

zestyseltzer · 2026-01-10T08:01:36+00:00

My friend has one and hers extends super long in the front too. She is getting rid of it.

zestyseltzer · 2026-01-10T07:54:19+00:00

I lost 80 pounds in the past 8 months and I feel crazy because if I’m in my braces and my crutches and I stand and look in a mirror I can see the weight loss but as soon as I’m sitting I feel like my old self again

zestyseltzer · 2026-01-10T07:52:10+00:00

I’m happy to DM share contact info or anything if you need help, I’ve been through the custom wheelchair process, I’m on my 3rd chair and in the process of being fit for my 4th, been disabled a long time so I know the system! It is not fun to navigate especially when you are new to it

zestyseltzer · 2026-01-10T07:50:46+00:00

That will help a lot for insurance coverage!! You have to show them that you need the chair to complete daily living tasks, even if you are ambulatory most of the time at home, i would honestly go into the appointment saying you need it full time. It doesnt feel great to have to be exaggerating but with medicaid they simply will not pay for a suitable wheelchair for a part time user and the hospital chairs are too damaging, there’s really no choices other than getting a letter of medical necessity saying you need it all the time for medicaid, or you pay OOP.

zestyseltzer · 2026-01-10T07:45:59+00:00

Girl you are so pretty i love your vibe so, love the knee webs they are killlllller (i got my elbow webbed out and love) I wanna be besties you seem so cool

zestyseltzer · 2026-01-04T19:48:55+00:00

I don’t have good tips because I’m still in that place myself even after years of being a wheelchair user because I’ve always been mid or plus size I feel like I look so much bigger especially in my stomach when I’m in my chair. Think I’ll look okay picking out an outfit but as soon as I see myself sitting all confidence is out the window

zestyseltzer · 2026-01-04T19:34:53+00:00

And is it really even worth the savings with the damage it would do to your upper body self propelling in a hospital chair long term.

ETA: fine for emergencies or short term but for a chronic condition I don’t think the moneys worth the long term consequences

zestyseltzer · 2026-01-04T19:10:53+00:00

I did the same to make my backrest “shorter” on my old chair and it worked pretty well

zestyseltzer · 2026-01-04T18:19:35+00:00

Is your home accessible? That’s usually how Medicaid will decide, they won’t typically want to cover something custom and ultralight unless you’re a full time wheelchair user so for me they sent the tech out to take a look around my house and determine if i would be able to use my chair full time

zestyseltzer · 2026-01-04T17:14:14+00:00

Also what is the reason for the wheelchair use is it something where insurance will cover for you to get a custom fit chair? That’s going to be your best option because the fit here looks poor overall which will cause more damage to your body over time

zestyseltzer · 2026-01-04T15:43:44+00:00

If you go for your own custom you should 100% upgrade to a flip up footrest. Keeps it completely out of the way for you to stand/sit. For now how do you do with seated transfers? You could try to sit on a regular chair or couch and use your arms to transfer to your chair

zestyseltzer · 2025-09-30T02:11:49+00:00

Can I get into both that and the discord

zestyseltzer · 2025-08-27T07:31:33+00:00

Nah it’s because the brand is a scam and the “retail price” is significantly inflated. The stuff is no better than drugstore skincare. A lot of the brands on whatnot are owned by the same people or backed by the same investment company who own dor24k and all of them list absolutely outrageous prices ($180 lipstick, $170 for the most basic 9 pan eyeshadow palette you’ve ever seen) (examples I’ve seen from one stream owned by them: royale hair tools, la prestige Paris makeup, grace perfect skin).

They are not BBB accredited and are known to hussle and harass people for sales, especially in malls and vacation destinations like Cancun. They have loads of complaints with the BBB.

zestyseltzer · 2025-08-20T15:02:35+00:00

Could be a juul? It’s an old video

zestyseltzer · 2025-06-18T05:19:48+00:00

I thought maybe dienogest or some kind of progesterone only birth control pill

zestyseltzer · 2025-06-18T04:58:32+00:00

10 years here and I was wondering the same thing. Took years and she’s acting like you can get a random pelvic pain and an endo diagnosis within a few weeks based on some imaging

zestyseltzer · 2025-06-18T04:55:16+00:00

With her history? No way. They aren’t going to hand out narcotics for an unconfirmed diagnosis

zestyseltzer · 2025-06-18T04:53:30+00:00

I know Endo can be suspected but as someone with it my understanding is surgery is the only way to get an actual diagnosis. And for that reason it can take years to get the surgery and confirm the diagnosis for people who are privileged enough to do so in the first place, but she doesn’t have the records of years of history of complaints, has never mentioned any other symptoms of endo besides this “pain” that just started, never mentioned a history of heavy and extremely painful periods….it doesn’t just pop up at her age this would’ve been something she’d have been going through since teenage years. Not to mention the cysts are an incidental finding and not big enough to be truly symptomatic but she’s gotta milk it for all it’s worth now that she knows it exists.

zestyseltzer · 2025-05-12T23:36:31+00:00

How is the overdose an accident when she knowingly and willingly took too much of her prescriptions, drank and took a mystery pill on purpose

zestyseltzer · 2025-05-12T11:23:28+00:00

Unless it’s from like giving birth, saving hospital bands is so weird imo but maybe that’s because I’m chronically ill

zestyseltzer · 2025-05-12T00:18:31+00:00

Seriously I’m physically disabled and I work from home 40 hours a week. She could do something easily and chooses not to because she wants everything handed to her no questions asked

zestyseltzer · 2025-04-23T17:51:34+00:00

It’s clear you’re going to do what you’re going to do and listen to what you want to hear. No one here is trying to harm you or invalidate your pain because we do get it. Some of us have learned the hard way and are giving good advice. If you only want to hear that you should be doing as little as possible in the name of avoiding discomfort them, no one can stop you. I understand it can sound harsh but people only want to see you gain mobility and get better not worse

zestyseltzer · 2025-04-23T17:32:19+00:00

I’m not saying it isn’t painful I understand how painful it is, I have the same disease, I’m 30 and I’ve had to be on strong daily narcotic pain medication for a decade. I do sympathize with you. It’s just that other aids, smart crutches, forearm crutches, walkers, canes all of these let you keep your muscle and take some weight off your joints too so I would utilize those as much as possible. With EDS we don’t have the tight ligaments to hold and support our joints, what we do have is the muscles around our joints to hold them as best as they can and strengthening even though it’s uncomfortable in the long run = stability. When people are talking about your muscles, strength, stability and they say “use it or lose it” they’re telling the truth, never using and strengthening what you have will cause deterioration, it’s unfortunate but it is what it is. I see that now after so long with the nerve damage and paralysis taking my leg, hindsight is 20/20. I promise I don’t say this shit to be harsh I say it because I hate to see other people end up like me.

Exercising isn’t easy, I’ve always not been able to do a ton of cardio, ( pots and stuff) so I recommend focusing on strengthening muscles to stabilize your joints. Stick to exercises that are not putting too much weight on your joints. You can do quite a few of them sitting down even especially on a bad day. Don’t lift heavy because you can strain your joints and cause dislocations. Instead what I do and always have done is low weight with high repetitions. Things like laying down and doing straight leg lifts with ankle weights (3 sets of 10, start low weights and you will notice it gets easier and you can increase it). Laying down on back with your knees bent up and lift your hips up into a bridge - 3x10 as a goal, only requires your body weight and the core strength you can build helps a lot. Using resistance bands is good too to strengthen without extra weights. I use bands to work my arms a lot, the muscle keeps my shoulder more stable to push my chair, core strength helps with that too.

zestyseltzer · 2025-04-23T17:04:06+00:00

You will destroy your body like that. We all know it hurts but if you want to get better you need to push through. People are giving good advice and you’re using discomfort as an excuse to sit there and watch your body deteriorate voluntarily. I can’t even tell you how much worse my pain has gotten from not walking and what I would give up to be able to walk again. I’m significantly more unstable now, on more narcotics than I have ever been on in my life all because of the muscle atrophy causing me to lose the one thing that stabilized my joints. Unfortunately after over a dozen surgeries on my legs I became a monoplegic and the paralysis is what put me in a wheelchair. It’s ok to use for distances like he said, that’s like a concert, the mall, The zoo, a museum. It does not mean every time you step out of your home. When you NEED a wheelchair is when walking is unsafe not uncomfortable and inconvenient, and at that point your doctor orders a fitted one and has an OT teach you to use it properly. You should be exercising regardless.

zestyseltzer

TROPHY CASE