What Else is Coming My Way?

This is one seriously messed up set of circumstances that I try to maintain some equilibrium within.

One short week ago, I was speaking to a group of volunteers about how palliative patients can be assisted by maintaining some normalcy in life wherever possible, and how much it has meant to me that my team of volunteers has helped me in doing that.

A meeting with my occupational therapist was set up for today, requested by one of my nurses who is keenly aware of my declining health. On the list were the following items: a wedge for my mattress to hopefully allow me to breathe more easily at night (laying down causes shortness of breath, severe enough that I have to try to sleep sitting up on some nights), and a wheelchair since it's becoming increasing difficult to walk or stand for more than a few minutes at a time.

The occupational therapist also recommended some amendments to the bathroom to make bathing easier.

All well and good, yet our regional social services have recently changed their policy so that palliative patients no longer receive any assistive devices. I can have a loan for twenty eight days, but no longer. So I'd better plan on passing within the month or I'll find myself back at square one.

On top of this, the rubber wheelchair pad that many of you have seen me toting around gets taken away too. This has allowed me to tolerate the drives to hospital appointments in Toronto, to sit on harder surfaces for a short while. I've fought that battle for some months, but solidly lost that one today.

The suggestion was to see if my doctor would take me off palliative status in order to get these devices (??? You get help if you're not as sick?) In which case I'd lose my volunteers - so there go the outings that have brought me a lot of joy of late - so no point in getting that wheelchair. To add to this, if I move to Oakville (the neighbouring jurisdiction) I could have all the assistive devices I could want at no cost. I can't even afford many of the basics in the one bedroom where I'm living now, much less move to that affluent community. Moving from the cheapest place I could find with handicapped accessible doors is not an option.

My ex-husband's insurance might possible cover some or all of these assistive items, but the legwork is beyond my current physical and technological capabilities (getting around to the various suppliers to get quotes is a challenge, and the computer has died on me once again, so no printer, scanner etc.) On top of that I need to get a denial letter from the government plan (which I already know I don't quality for because of a short-sighted decision re Canada pension plan contributions when opening up my photo business ten years ago). If you live in my province, you're probably aware that filling that requirement will take months.

Is it any wonder that my head is reeling right now, wondering how the heck I'm supposed to manage all of this on my own? I've tried so hard to believe that life continues to throw challenges at me as part of a bigger plan. I'm getting to the point that the longer this goes on, the less I understand how one lifetime can be filled with so many obstacles. It's very difficult to get on with the process of just trying to do some living when one has to spend so much time answering the question being asked of why I'm still kicking around. It's an answer I don't have.