Thursday, March 22, 2012
I have this fantasy (one I can share), a common enough one, about winning the lottery. Depending on the amount, of course, I would give a significant amount to each of my family members. Then I would set up a medical trust for myself, and another, smaller amount would go to living expenses. I’d give what was left to friends and charities. The end.
I am sick to death of depending on my family for support (beyond the tiny amount I get for disability). I want to find somewhere else to live, somewhere less expensive, though moving would be incredibly difficult. I like where I live; my providers, except for the main one at the University of Washington, are within a ten minute drive from me. Finding a different therapist, dentist, healer, etc., would not work well for me, and driving any further would not work either.
This is what is so darn hard about chronic illness, especially when that illness involves intractable pain. Pain that is relentless. And yet I’m trying to back off all my pain meds because of what they are doing to my body. But I have horrible pain strikes; I went out for dinner (a seldom experience) with a friend Saturday nigh…driving home, my legs and butt where screaming in pain. Zinging so bad you could practically hear the buzz. So I’m not sure backing off is a good idea, but I can’t stand it anymore. The side effects, I mean. I am so tired of trying to balance it all, it makes my head spin.
Another fantasy is that someone from a distant planet with remedies unheard of here on Earth will come down and make me all better. And give me the power to make others better. You know something? I’d go with them if they asked. Or maybe they would just take me. Of course, people who claim to have been abducted never have anything good to say about Aliens. Mind you, these are the same people who don’t have anything good to say about most people on this planet so it’s hard to say for sure.
When I meditate, I think about these things. If I can make my pain take a backseat when I meditate, why can’t I make it go away for good? I mean, our cells regenerate (or something like that) every 24 hours (or every month, can’t remember) so if that’s the case, why can’t they come back in a different form, without the pain? They regenerate as carbon copies of themselves, so the tumors are still there and of course, so is the pain. Not everyone who has NF has pain, of course. The new neurosurgeon I saw a few weeks ago said that people like me, whose tumors are mostly inside or on their trunk have pain, but those with tumors all over their faces, hands, legs, arms etc., usually do not.
It grieves me that NF is more common than so many other well known disorders and diseases, but you almost never hear about it. Probably because we live in the shadows because of what we look like, or how horrible we feel because of the pain. I would love to find a spokesperson for NF who everyone knows. Let’s all work on that, shall we?
Posted by Sherri at 12:37 PM