Another blink of an eye, suddenly you're wise.

This is something I don't feel comfortable writing about out in the open, but it's something that must be written. Maybe I'll end up posting it to the more public site once I get my friend to take my last name off the freaking link he has on his website. I asked him before, but whatever. I hate the idea of someone finding me through google, especially some future prospective employer or something.

Anyway, I have to write about my lupus tonight. I don't know why, but it's something that I've been wanting to talk about lately and I find that I can't. I want to really talk about it. With someone who understands. My friends are great and all, so are my parents, but I just want someone who knows what I'm going through and there doesn't seem to be anyone fitting that description around. It can be such an isolating disease. Especially because it's so hard for people to get it, I mean really get it. (Okay, I know I'm getting a little too happy with the italicize, but I'm making a point here, yo).

I was going to say I don't know why, but actually I do know why I've been thinking back to the early days of my disease/diagnosis a lot lately. Lately I've just been feeling so damn foggy, like I can never quite wake up, even though trying to sleep lately has also been a challenge. Is this a part of the disease? I have no clue. I read the forums and a lot of people talk about insomnia and the brain fog so it could be, or I could just be tired and lazy for no reason. Who knows? It reminds me of the days when random joints would start to ache and I wasn't sure if I was really sick or hurt myself carrying groceries. That's probably the most frustrating thing about this disease, it makes you question yourself constantly. Is it this? Or is it the lupus? Or is it that? Or am I just freaking losing my mind here?

What also frustrates me is that I don't think my friends or family really know what I've gone through. Not that I want pity, far from it, I just want them to get it. I know my parents definitely get that this disease is a big deal, that it affects every part of my life, every decision, every single freaking day where I wake up and walk around and breath air for God's sake! I recently read this thing called The Spoon Theory and it made me feel so relieved...like maybe I can send it to my friends and they'll get it now. But I don't know. It's hard for them to know because they weren't there when I was really sick. They weren't there for the days where "simple" things like brushing my teeth, getting dressed, putting my hair in a ponytail, even wiping my own ass (pardon my French) were monumental challenges and made me want to give up and cry. How do I explain that to them without sounding like I'm looking for "poor pitiful you," which is totally not what I want. I don't even know why it is I want them to know or understand, I guess it's just human nature to want to feel like other people see where you're coming from.

I just have all this unreleased ranting inside me and it makes me feel so alone. I know that I'm one of the lucky ones, that it was caught in time, that I've responded so amazingly well to the medication, but some days it's hard to feel lucky living with this disease, knowing how different it makes me from all the happy-go-lucky folks my age. People are worrying about their careers, partying, fitting expensive purses into their budgets and I'm worrying about whether or not the medication I'm on is going to ruin my chances of having a baby. If I'm going to be "cleared" for having one at all. If I have enough money to pay my medical bills. If prospective employers will somehow find out about this disease and not hire me because of it.

I try to be optomistic and positive about it, but sometimes I can't help but feel...jealous. Jealous of my friends who see the doctor once a year when they have to go to the gyno for a refill of birth control. Jealous of my friends who don't know all the ins and outs of their insurance plan and who never even max out their deductible. I know it's pointless, but sometimes I just can't help it. And sometimes I want to cry because I feel so lonely. I look through the long list of "buddies" on my instant messenger and I know that there is not a single one who will get what I'm going through. And I guess I wouldn't want them to, because I wouldn't wish this on anyone, but I do just wish I had someone. The Hubs is great and he has seen the worst this disease has inflicted on me, but, well, I guess this is all coming out right now because he's away and I can't talk to him about all this.