Bureaucracy Sucks

My independence is directly tied to a motorized wheelchair, without it I am unable to move around my house nor can I leave my house on my own. Last August, I quickly learned how dependent I am on this one item.

I had been sitting out on my deck visiting with an old friend, I headed inside, turned off the chair so I could reach across and turn on a lamp so as not to bump the controller and crash into something but when I went to turn the chair back on nothing happened.Well, something did happen, an error message flashed, but power, I had none. It turned out a motor had died which would prevent the chair from operating until it was replaced.

Luckily, I keep a manual chair on hand that I can take in friends' and family members vehicles so I had a friend help me get this out while I sat helplessly watching.

I should probably explain at this point why the manual chair is so limiting. First I have very little upper body strength which meant I couldn't cross some of the thresholds in my house with this chair nor could I control the chair with my arms to be able to sit out on my deck. There was no way I would be able to go to the store or any number of other things I enjoy doing.

I also removed all the carpets in the house, which is great normally but with the manual chair the bare floors allowed the chair to tip when trying to transfer and nearly spilled me out several times.

My chair was paid for by my insurance (Medicare) and I was assured any necessary repairs would be covered as well. Unfortunately, no one told me repairs must be approved first. The company who provided me with the chair is no longer in business and it turns out Medicare only approves a certain number of companies to work on these chairs.  Calling Medicare, I was informed there were nine companies who were approved to work in my area but they would only give me three names at a time. If those three companies refused to do the necessary repairs I could call back and get the next three company's contact information.

It took two calls to Medicare to find one company willing to do the work. They scheduled an appointment to come look at the chair two weeks from the day I spoke to them. I patiently waited, trying not to break my neck with my back up chair. On the day of the appointment I was informed that the technician would then contact Medicare who might take up to six weeks to approve the repairs and only after approval would the part be ordered.

Six weeks later I still hadn't heard anything. I contacted the company and was informed they needed a letter of need from my doctor before they would submit the request to Medicare. In order to be approved for the chair I had to meet and be evaluated by my doctor, I had to visit a physical therapist of Medicare's choosing for another evaluation, and then submit to an in-home evaluation as well.

Medicare has all this but I now had to go back and start the process all over just to have a repair made on equipment Medicare approved in the first place.  Did I mention I have no strength to get around? The only chair Medicare paid for is sitting in a corner unusable, yet they expect me to get out and visit my doctor!

To make a long story shorter, I was without my chair from August 15th until December 28th! Four and a half months it took to have a working chair back.  In all that time, no one cared that I was now a prisoner in my home completely dependent on others for the most basic of my needs.  Bureaucracy!

*The F.I.C.

I'm sorry, but I can't...

Anyone with a chronic illness knows the feelings of guilt that go with "I am sorry but I have cancel..." at the last minute because their condition stopped them.

 

A friend (with her own chronic illnesses) and I had been making and breaking plans for a long time. During one of our middle of the night texts conversation she cancelled plans for the following day. She started apologizing and I could tell she felt bad about it. Although disappointed, I understood completely. Telling her I understood wasn't helping her feel any better about it. So I found another way to say it.

 

F.I.C.

That was how the F.I.C.( Fuck It Clause or Forget It Clause) was created. I told her from then on we would consider any and all plans tentative until someone actually left their house. The F.I.C. is the understanding between people with disabilities, chronic illnesses, etc, that sometime we can't do what we planned to do. Doesn't matter if we made those plans an hour ago or a month ago.

 

Those of us living conditionally have called the F.I.C. many things. We said "I'm too tired", "I'm not feeling up to it", "I'm having a bad day." But all of those things, though true, have been invalidated by people saying they are just "excuses". Its not an excuse, that's my life. So, from now on we use a new saying. "Sorry, F.I.C., lets reschedule."

 

Do you have different ways of saying F.I.C.? Tell us about them in the comments below.