The cushion arrived. The cushion itself is perfect. But there are new problems because of it.
1. My heels don't touch the platform of the scooter because of the thickness of the cushion (3") unless I wear shoes with a good heel, like my Keens. I'd rather not look like June Cleaver or a hiking version thereof around the house--I can't really see going in shoes all the time; it's not practical. Not having my feet supported well gives me more back pain.
2. I can't use the armrests or the lucite desktop because they're too low. I need the armrests as much as I can use them (they're a little low for me even without this cushion) for support/relief of pain. I might be able to get some padding for the armrests. I don't know. It's possible I could get the post of the scooter shimmed off by our service tech by an inch or so--he said he could do that to give it a slight permanent tilt while in motion if I needed, but I'm not sure if he could shim the whole base.
3. The tiller feels too low.
4. I can't get full function from the tilt-in-space because this means the seatback supports less of my back--I'm sitting higher. And I can only tip back so far this way without straining my neck/back.
But the cushion itself is perfect for my rear and spine and relieves pain. And I can only sit a few hours at a time otherwise, and am in great pain later. Does this help anymore? I don't know. The slimline cushion might give me an inch but is still going to cause a lot of problems--the original padding for the seat is very, very thin. The reduced thickness also means not sitting up as much--I need the padding for my spine and SI joints to be able to sit up.
So here are my questions:
1. Do I live with these additional changes as is?
2. Or exchange the cushion for another thinner one, the Slimline, from Allegro, which will take another month? This cushion might not help as much with pain.
3. Do I make an additional attempt to get a wheelchair, which could be more customized, from my insurance company (info below)? Even if I could get insurance to pay for a wheelchair, would they consider my specific seating needs medical necessity? I can't pay any money out of pocket.
4. If so, should I seek referral from my rheumatologist (who knows my limits) to a seating expert, which I didn't even know about a few years ago, or should I go to a PM&R doctor who works with SCIs and amputees and see if they can make recommendations and give a referral? While I have a PM&R doctor, he specializes in injections and spine procedures, and I don't know that he's prescribed any wheelchairs in the few years he's been in practice.
Sometimes I've shorthanded by saying insurance won't pay for DME--in theory they might, in reality not. Sparing you the long details of insurance bureaucracy, which I'm glad to type out if anyone's interested, I am wondering if I would be more likely to get them to pay for a wheelchair, which can be more customized, if I went directly to a PM&R doctor. Before deciding just to outright shelve and deny my claim, they told me that only PM&Rs and certain physical therapists can prescribe (which I only recently found out is illegal--internists and rheumatologists can prescribe and document medical necessity). I doubt I could get the tilt-in-space function since a friend with very high level of disability can't, even though my seating tolerance is very low. Now that I'm primarily couchbound I may qualify under the Medicare rules my insurance company uses too.
What cruelty, the Medicare rules--how many people are housebound, virtually imprisoned, by such archaic laws that deem if you can make it a very short ways in your house that you don't need a wheelchair, that shopping and medical appointments and participation in the world are not necessary?
I could weep. I have wept. Writers are not supposed to say this. I see why seating is considered an art rather than a science--there are tradeoffs that can truly compromise quality of life. I'm sorry to be a downer. I was thrilled when I first sat down.
Why didn't I get an engineering degree? This really is not so difficult. I know what I need. It's just apparently an impossibility. There are so many wonderful products out there, products people can't get and that inventors can't succeed with. What is the economic and social cost of people being on disability and needing more care rather than being more active? The right cushion and the right ergonomics--basically my home office chair with power, almost--can make a lot of us functioning rather than having to choke down hydrocodone just to enjoy a day out, a day out that will cost days and days of functioning later.