Letter to a friend...

My very dear friend invented a "cover story" for the chunks of our life together that I don't remember because of the strokes and other neurological damage... Whenever they talk about something we did, and I don't remember, they say "and then you were tied to a tree" lol. So, there was the time that we went looking for the maple sugar bush, but it was closed, and I got tied to a tree... becuase I don't remember ANY of it. It makes the biggest difference, because it lightens, and takes the shame and some of the grief out of the fact that I've lost chunks of my history, and chunks of my life.

I'm so sorry to hear about you losing your writing. I can only imagine... I've found a bunch of mine in my computer, but lots of it is brand new to me, because I don't remember writing it. I'm reading it, thinking "hey, this is pretty good". lol.

I'm so incredibly glad to have met you. Thanks for being my friend. :) This stuff is so scary, and so fucking goddamned awful, and it's so hard to explain to people, because just talking about it feels like my heart is going to fall out of me with pain and rage.

My ex told me after a year and a half that I should be "over this", and I should be adjusting to life with this stuff. If it was just lupus, maybe... but it's CENTRAL NERVOUS SYSTEM LUPUS, and I'm still not past the first 5 years, yanno, with the 50% survival rate... Then there's the 2 clotting disorders that caused the strokes, giving the CNS lupus a focal point for the seizures, so epilepsy... Now there's fibromyalgia, so constant pain. Add to that, the pre-existing migraines, the reynauds, which means that my fingers, toes, nose, nipples and lips lose blood flow and turn blue when I get cold, and think we're close to done. Plus, memory loss, cognitive impairment, IQ loss, not being able to scuba dive anymore, or play as hard because of the blood thinners, or do breath play, or, or, or...

So, yeah, I'm OK! Damnit! But, I'm not over it, and I don't know that I'm going to be. I don't know if that's the point. If I get over it, and I accept it, then I think that I have to quit too. Because I'm a kinky girl, and calculated risk is something that I agree to live with. So, I have to do a certain percentage of what I want to do, dangerous or no. And then I have to do a certain percentage of resting, which I am not so good at... Ya.

(you never knew what you were getting into when you offered to let me rant did you...lol.)

Thanks sweetheart.

again, much love and light to you. the deep dark places feel a little less scary today, and that's all you. :)