I'm actually quite lucky. I have a good, knowledgeable doctor, a husband and son who put up with all the many changes Lyme disease and an active mold infection/invasion/whatever you call it brings, and I try to remember there is indeed hope.
But knowing I'm lucky and acting like I'm lucky are two entirely different things. I've been trying to process what's going on with me and I find myself being sad, angry, hopeful, back to mad as hell. I think that's probably normal for anyone who gets bad news about their health. I also think a lot of people in similar situations are afraid to say they're mad, because so many other people have a life that is much worse. I know this. I mean, I *really* know this. But it doesn't help when you're shaking like a leaf from pain or so sick to your stomach you can't move. To hear "this is good, this means the bad bacteria are getting clobbered!" doesn't do me a bit of good then. It makes me get all bitey and stabby.
I guess I'm just not an inspirational kind of person these days, and that makes me all kinds of sad (and mad). Right now I'm not the kind that can be joyful in the midst of swallowing 15 pills, thinking "at least I don't have to have an IV every day." And I don't like me anymore, either, which is pretty sad, too. It's not surprising to me that many people have backed away as if I had a toxic waste tattoo on my forehead. I don't blame them. I'm a pain in the ass to deal with right now.
I miss me.
My latest appointment brought up a lot of new issues, all of which mean I can be treated that much better, but none of which felt like particularly happy news. I have an active mold infection (I guess that's what you call it) three times the toxic level expected. We have no idea where the mold is coming from, and mold is in all sorts of forms. Most people think of icky black mold, but I learned that all my books, especially my antique books, and pretty much anything antique or vintage I've brought into the house, could contain whatever it is I'm infected with. I need to see an allergist to find out, but worst case scenario, I'll have to discard a LOT of treasured things. My life is more treasured, but I don't think there's a single one of us who would cheer to see your carefully curated things go in the burn bin. So we're getting a home inspection, and will go from there.
I try not to think about it.
Ha. Actually, trying not to think about it is getting easier. The doctor said I had the worst case scenario of Lyme and mold together because they both can mimic each other and make it difficult to know what you're actually killing. And my tests showed that both the mold and the Lyme has entered my brain.
To which I say, getoutgetoutgetout I did not invite you in. Get OUT.
(OK, time for a station identification where Lori reminds herself why this is all worth fighting.)
That little boy is the love of my life and I have to be here for him. But many days, I'm not. Adding new supplements and medications to fight even harder has rendered me on some days almost incoherent. I sleep for hours and hours and don't remember where I am or what day it is or what time it is when I wake up. Again, all this is good because it means my body is really giving it the good fight. But I HATE it. I hate missing an entire weekend of seeing Zack, reading to him, ANYTHING.
Having this stuff in my brain means it's harder to hide, too. I stumble, bump into walls, need my cane, walk with stiff legs, all until I can sit and get under control for a few minutes. I can't go for long drives anymore, which used to be a way I got my grouchies out. It's difficult to read because I can't remember what I read. I can't remember if I got all the right presents for the holidays and they're certainly not wrapped. And I'm having my pretty long extensions, all that lovely pink and purple, taken out tomorrow, in part because I just can't take care of it. I'm afraid I'll cry when I see what's left.
We also discovered I have a genetic mutation that means I can't process folates, and the medicine I was given when they thought I had lupus was actually toxic to my liver. Yay.
But really, I should say YAY! with all sorts of enthusiasm because knowing all this, finally, means I can start to heal. The doctor says at least 18 months. That seems short sometimes, forever other times. And I'm bitter about the year I lost, getting sicker and sicker and not knowing why. But some people go years without knowing. I'm trying to be chipper, I swear to pie I am, but it's very, very .... very difficult.
I have no idea what next year will bring. I know I'll do the Bead Soup Blog Party but it will probably be a little different. I can't make any real plans, as far as dates yet. I'm sitting upright at this moment, typing, but tomorrow I could be flat out again. Or not. I just don't know. And I HATE that. I'm going to try to be more cheerful and be easier on myself. I hope.
I'm just really frustrated. And I can't seem to put it into proper words. It all sounds whiny and pathetic and I can't seem to make the lemonade out of Lyme right now, today, but who knows about tomorrow.
I have absolutely no idea if this post made any sense. I'll leave you with my best boy, making his mark in the world. I hope to join him soon, making our marks together. Ya know? And I have to fight in order to do that.
Lori Anderson creates jewelry and bead kits as well as collaborative mixed media art with her son, Zack. Visit her shops by clicking on the right side bar of this blog (please and thank you!). She is also the creator of the Bead Soup Blog Party® and author of the book "Bead Soup".