Collateral Losses

I am still not doing very well at keeping this blog up, am I?

I have been dealing, lately, with several physical issues, most of which aren't caused by the MS, but are part of living with disability.

My hands have been increasingly affected by the MS. By the middle of the day, it's hard for me to type. By the time I get home from work, I feel like I have flippers on the ends of my arms. This does not encourage me to write.

New solution: software called Dragon Naturally Speaking. It is a wonderful program that enables me to talk into a microphone while the software takes dictation and the computer types. As advertised, it took only a few minutes of training until the software was very accurate. I tried similar software about four years ago and it was pathetic. I would get so distracted by all the mistakes the software was making that I couldn't follow through with my thought. Here I am, at my new desk using my new software and completely out of excuses for not writing. We'll see what happens from here.

Getting Dragon software didn't cost too much money but it did have a significant price: it doesn't run on the Mac. I have been self-righteously a Mac person since I started using a personal computer. Switching to a PC ha s been a bit of a wrench. Sometimes reasonable accommodations aren't convenient or enjoyable. I end up choosing the lesser of two evils.

I have one last toenail than when I last wrote. A few years ago when we moved from California, my big toes experienced some injury that I didn't feel. My two big toenails were bruised and damaged and haven't looked quite right since. Using the wheelchair all the time, I travel the world feet-first, my footrests holding my toes out in front of me. Sometime in the last couple months, my right toe was damaged again. I assume I smashed it against a door, since the only way I can get through doors without handicap buttons is to push them with my feet. The podiatrist I visited removed my toenail. It may or may not grow back.

A couple of weeks ago I fell. It was my usual not-quite-making-the-transfer and sinking fairly slowly to the floor. This time, though, I pulled a muscle in my right thigh. Since then, not only have things been painful, but I am unable to transfer without Ralph lifting me from one surface to another. This is a big blow to my independence.

I went to church la st Sunday and the service included an anointing for people praying for healing. I didn't expect it, and as soon as I went up front, I started to cry. I hope not many people could tell. My friend Carolyn, who is one of my angels, lent me her shoulder. She had polio as a young woman and uses a wheelchair, so she knows the frustrations.

I hope that this injury will heal and I will be able to regain some independence. Meanwhile, this is a wake-up call that I need to identify some additional support for us. Carolyn helps me understand that I need to take responsibility for getting what I need.

I am mad that I can't just turn my case over to some social worker who can identify resources and get me connected to them. Case management seems like a huge, tiring, undertaking. I complain that it isn't fair and that the health care system is broken. That may be true, and I often think that I should become more of an advocate for systemic change. What I need to do right now, though, is start making some phone calls. It is better to light a candle than to curse the darkness.