We discussed the disease progression, the inevitable outcome, possible treatments. I felt comfortable that she was familiar with my disease, and after discussing pros and cons of each treatment we agreed on how to begin. Note that I did not say cure, there is none and I will eventually lose more vision, possibly every bit. All that can be done is to possibly slow it down.
So, in the next couple of weeks I'll have one more multifocal ERG, a specialized test in order to get a baseline of where my retinas are in terms of damage. Then we'll begin the first course of treatment.
Treatments will destroy my immune system. For a few years I'll be unable to do many normal things like drinking tap water, eating at a buffet, being in public without protection against simple things like colds or flu. An infection could be fatal. Yuck! Worth it to see for a few more years (we hope)? Sure, grand babies faces alone are worth it. Heck, being able to watch Survivor is worth it.
I'll be meeting with a low vision specialist also, getting training to use that white cane, learning how to adapt the things I need and want to do into things I can do again. Getting ideas on how to make my life easier, thinking outside the box. Organizing better so I don't brush my teeth with Fixodent or Aloe Vera anymore. Yeah, it'll be helpful.
I've been thinking about how it is now fact that I will never drive a car again. My beloved Subaru will be sold.
Probably for the best, that way I won't be reminded every time I step into the garage. Hey, the local taxi company knows me by name now, so it'll be alright. I'll never get a traffic ticket, or have my auto insurance go up.
I will find good things to make up for the long list of cants. There are many things I've always wanted to do and try. New hobbies, new things to learn, new places to go. I'll still enjoy my life, just in different ways. I'll adapt and adjust. It'll be fun!
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