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Exercises in Absurdity (or, Getting a Wheelchair, Part One)

When I started writing this, I had just broken down crying.

It happens sometimes. I’m constantly fighting, every day, for everything – insurance companies, doctors, etc. I feel like I handle it all pretty well, and I don’t have many moments like these, but sometimes the frustration becomes too much to bear.  I had just spent a couple hours on the phone with insurance (which would make anyone cry) and medical supply companies, trying yet again to get a wheelchair. Unfortunately I have several symptoms that make a wheelchair necessary, caused by EDS – fatigue, lack of energy and stamina, chronic pain. We’re hoping that having a wheelchair will allow me to be more active than I am now. What I’ve been looking for is a very lightweight, small, folding wheelchair, easy to propel myself, that I would be able to put in my car myself. Simple, right?

Don’t be silly.

My insurance technically covers wheelchairs. However, as seems to happen every time I need medical supplies, I have not been able to find a supplier in my area that takes my insurance AND also carries wheelchairs. Here’s how it goes:

  • I call my insurance and ask if they cover wheelchairs. They do.
  • I ask where I can get one. They say all they can do is give me a list of DMEs (Durable Medical Equipment companies) in the area, which is hundreds of companies. They can’t tell me which companies carry wheelchairs, which is a problem, because DMEs can carry oxygen supplies, nursing supplies, tube feeding, etc. See the problem?
  • The best they could tell me was to start making phone calls, which is what I had to do when trying to find a supplier for my Liquid Hope tube feeding formula (I was never able to, but was given a case worker who figured it out).

So I did start calling, but I struck out, because every company I called either didn’t carry wheelchairs, didn’t take my insurance, didn’t take any insurance, or didn’t exist anymore. After calling 30 places, it seemed like an exercise in futility. I kept working on this off and on for months. I would my insurance and ask them the same question again and again. They were very nice but unable to help. I’m honestly shocked they don’t have a better system; it wouldn’t be hard to have a better database with a front end that can query parameters like “wheelchair.”

I even asked my insurance caseworker, who did finally find a company near me that took my insurance and carried wheelchairs. So I called them and asked if they had lightweight wheelchairs and if I could try different models and see what I liked, and they said yes. Finally! But when my husband and I went, we were disappointed. It was basically a pharmacy that also sold a few wheelchairs. They had two different models, standard and what they called lightweight, which still seemed heavy to us.

However, because my prescription said “wheelchair” and not “lightweight wheelchair” they could only give me the standard wheelchair. Which is insane, because how would I know I needed to specify that? Why would I not be able to choose the kind that best suited my needs? Because this is the American Healthcare System, that’s why. The two different kinds weren’t much different, though, even the lightweight one weighed over 30 pounds, so either way I wasn’t going to be able to lift it into my car. We thought we could work out a ramp so I could get the standard one into the car, and I really needed one, so we decided this way the probably the best we’d be able to do, and took it.

Unfortunately, as soon as we were in the car with it, even though it was in the trunk, we both noticed the smell. It reeked of chemicals and set off my mast cells, giving me a bad headache and other unpleasant symptoms. Even my husband couldn’t stand it. When we got home, every time I got near it I reacted. We left it on the porch for 2 weeks hoping the smell would dissipate but still, I couldn’t even get near it. I felt totally defeated.

This story has a happy ending, I promise. To read more about how I finally got the right wheelchair, subscribe to receive future posts!

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