Weekend Thoughts

And the weekend is here. Have taken down a lot of family portraits so I can can put up christmas decor on Black Friday. Can't bring myself to shop on that day after trying it once decades ago. Too much hassle, too much traffic, too many crowds, and it seems that everyone shopping is in panic mode that they won't get that holy grail of a bargain that will make their holiday experience true magic. Nah, I'll stay home, play holiday music and decorate to my heart's content.

No plans yet for Thanksgiving Day. Turkey doesn't sound like something I want on the menu this time. Is that American blasphemy? Barbeque is what is running through my head, or steaks on the grill. Key lime pie, baked potatoes or fried, cornbread, Le Soeur baby peas, salad, clementines. Just not the same ol' same ol'.

I've cleaned this morning, and need to do laundry. Every other day is a load of sheets and whites along with a load of bath sheets. I can go longer between times of doing laundry, but it takes a long time. Easier just to stay on top of it.

A half a pain pill and a two and a half hour nap have made a world of difference. Nah, I'm still blind, but my back feels much better. It would be amazing if a pill could let me see again, I 'm hoping to get in on a clinical trial in '14 that implants a microchip in the retina. I hear the initial trial in Europe went really well. It's for patients with Retinitis Pigmentosa, but perhaps I can talk (or bs) my way into the trial anyway.

What gets me is that in my dreams I can see perfectly. Everything is clear and in great detail. Everything is the way I remember it being, and so enjoyable, no squinting or headache from straining to try and focus. Then I wake up to three of everything, tunnel vision and what can be seen is a horrible blur. Is it any wonder that I enjoy sleep? 

Last night and this morning I was studying up on my eye disease. I do that frequently, looking to see if there are any new treatments that are promising for AutoImmune Retinopathy. There's just not much out there. The disease has no established treatment, no cure. Taking down the immune system may slow it down, possibly stop it for awhile. It won't restore my sight. 

Some of the treatments being experimented with have possible life threatening side effects. So, how much health to risk in order to see better? Is it worth dying in the first 24 hours of treatment? Is it worth kidney failure and a lifetime of dialysis? Is it worth melting the cornea and not knowing if the treatment is a success until someone dies and their corneas are transplanted into my eyes? The other risks are just as bad. Where do I decide that the risk is worth the treatment in order to see one or two more lines on the eye chart? My sight is at finger counting range now. If it could get my sight to the point where I could see with eyeglasses then I might think about the risks differently. Getting my sight to where I can read letters smaller than inch tall without a magnifying glass is another thing.

That's part of the problem with a rare eye disease. There's not tons of money being thrown at treatments leading to a cure. Not enough people even have it to do any large scale clinical trials. One hoped to get 7 people in order to have 5 to make it through the trial. Another tried 14 people. Just not enough cases. I'm the first patient my eye specialists have ever seen, and these are the guys who teach other eye specialists. It's a learning curve for all of us, and I'm studying just like my doctors are.

So now I've done my research and studying for a few days. I'm going to just enjoy life now, spending time with my Darling Husband and pets, make some more purses and take life as it comes.