I want to stay positive… but how?

I just don’t know how to stay positive anymore. It’s like some higher power is out to get me. I feel like I can’t complain because there are always people that are worse off and I don’t deserve to complain. I’m so used to taking care of everyone else, that this is really killing me. I rarely take a self-portrait, but I figured it wouldn’t hurt to add to my collection. The one is me right after I had Ava, and the one on the right is about a week ago and the 3rd one is right before half died, then there is a picture of how boring I look anyway 🙂

I never went to bed the other night because it literally felt like if I shut my eyes, they aren’t ever going to reopen. Nobody gets it, nobody. Until April 2008 I went to the gym 3 times a week. Now I can barely move. In the last 3 months I have gone down hill so rapidly it’s taking a real psychological toll. I’m so angry at myself, angry at my medical providers, and I just feel bad. I have turned into a 31 year patient with what I can only describe as dimentia-like. I don’t want to go around anyone and I don’t want to drive. I have lost a lot of capability to remember short-term things. When I say short-term, I mean, I will be told or tell myself to do something, like open a web page for instance, and in the process of doing it I forget what I’m doing and never do it. This happens to everyone, which is normal, but this happens to me about 150x a day. This all started back in November when my sister was trying to talk to me at thanksgiving and she said, “What the hell is wrong with you?” because I wasn’t making sense and it felt like my brain would stop functioning but my mouth will keep going. It’s been a steady progression downhill except the last 2 weeks have been advancing even worse. I can’t even begin to describe it, but normally I am a really good multi-tasker and can do 5 complex things at the same time, and now it has gotten so bad that it takes me 8 hours to do one thing if I’m lucky, 3 days otherwise. E-mail sit half composed for 2 days. This blog will take me a day to write if I’m lucky. My medicine and my iron intake is completely affected by my current blood situation. It’s not absorbing right and has absolutely no effect. Out of nowhere in the middle of the night while I was sitting here watching the Five on Fox News, both of my feet at my toes swelled up, started hurting really really bad, and lasted about a half hour and mildly went away for the rest of the night. That scared me. It’s freaky things like that that scare me. That day I felt like it was the end. I had absolutely no will to continue on. Thank god I haven’t lost my ability to type, but carry on a conversation, not really.

Out of nowhere I lost the ability to speak. I wasn’t even sick, just one day, no voice. I get recurring staph infections on my face, my hands hurt bad, some days worse than others, and now my feet. It’s just my extremities so far. The last thing I need is for whatever to spread to my back. This was supposed to be my year!!!!!! It is starting to affect me because I started this year on a positive note, not feeling very well, but hoping it was just temporary. I trusted my clinic that they had my back and would tell me when something is wrong, instead they hid it. Now I’m paying. Over the past 7 months I pretty much convinced myself that it was all psychological. Then I decided to start taking photos and videos of all the weird shit my body does. Right now I have a pretty good convincing collection. It went with me to the hematologist the other day. If I hadn’t of had those photos, who knows how things would have been. Ultimately I got very few answers anyway, which sucks.

Well, i’m temporarily publishing this unfinished so I can eat something, and then i’ll finish writing when I’m able to think and remember too, but hopefully I won’t forget, I have too much more to say.

Ok, here we are almost 12 hours since I started this message. I never went to bed because I had so much to do, and one of them was finish my blog posting. I kept meaning too, but I kept forgetting. I’m never this bad. My medicine just won’t work like it’s supposed too. I don’t think it will start working until I build my blood back up I’m supposed to go twice a week for the first month to have my blood replenished and then monthly for the rest of my lifef. I wasn’t happy when they said that.

So anyway, I have a lot of weird stuff happen to me. I have face “ulcers”, out of nowhere I have really bath arthritic limbs that swell and get so very painful. I can’t do much about it because I can’t have NSAIDS and trust me, I have tried. I get a burning sensation in the stomach and then feel ill. I’m stuck on Tylenol, which I have to take in moderation. I will sleep for days, then not sleep for days, like now. I’m so overwhelmed as if I don’t have any time in the day. It also is bad that it mentally just going very downhill. I have to pause and think how to use my iPhone, which I am good at. I sit and stare blankly into nowhere. I will stand up to do go do something and immediately forget.

Here are some photos of things that happen to me:

Profuse bleeding and staph infections: