Learning To Live

It has been more than SEVEN months since I have had IV antibiotics for my cystic fibrosis. I know I say this every time another month passes, but I used to have to do them every 2.5 to 3 months. So this is a BIG deal. But it's not like I thought it would be. I thought I'd have more energy and be SUPER CARLA! Able to do many crafts and babysit and dance and socialize all in one week! And able to organize and keep her house clean! And she now does the dishes and laundry too! Except that's not what this is like at all. And it confuses me. I should be super excited that I have gone this long without a hospital stay or doing home IVs. I haven't had to risk losing more of my hearing or doing more damage to my liver and kidneys. Those are very positive. I haven't gotten so sick where I can barely breathe and barely move. I enjoy that. But again, I'm confused because I thought this would be different. I still sleep a lot. More than most people. More than...

I can't sleep. I really want to sleep because I have to get up in the morning. I have a fun day planned for tomorrow and the next day - and they will be full days. I want to be at my best. I need to get sleep. But instead of sleeping I am up typing because I found myself hurting myself as I was trying to fall asleep. I was thinking about the things that are bothering me and I was clawing at my back. Physical pain is easier to deal with than emotional pain. I know how to deal with physical pain - it's the emotional stuff that really gets to me. I hate that I'm still awake. I keep thinking about one thing over and over and it's driving me nuts. I'm thinking "what's so special about her?" and "what's so wrong with me?" I don't get it.

Insomnia of the worst kind. This is the "Jump out of bed you have so much to do!" insomnia. Not the, "Man I'm tired but I just can't fall asleep" insomnia. Then, at least I am content to stay in my bed eating Popsicles until my blood sugar is high enough that I fall asleep (don't worry, it's not really dangerous, just not good in the long-run). This is the "why don't I get out of bed and use those dorm decorations I made like two years ago to decorate the back of my bedroom door, because that's a GOOD idea for 2 am!" This is the "Let's finish cleaning that mess in the living room that was the contents of THAT desk - and then move on to the front closet - and remember to move all the stuff from your CURRENT desk to the family room to sort THAT stuff - especially the stuff on top of the desk - because I want to get rid of that. OH, and how about cutting apart magazines to finish the back of the bedroom door project? That...

It's 6:55 and I've been up for an hour and 1/2. Wooo hooo. I slept until 5:30 this morning instead of waking up at 5. What happened to me waking up at oh, 10 am and then being able to go back to sleep? It died on that plane ride back from Europe. I can't even nap successfully any more. Today I have a CT scan - and I know what the Dr. is going to say. "You need surgery." And I'll say, "Can it wait until late August because I'm kind of busy enjoying my summer, and it'd totally suck to have surgery when all my friends are more available to spend time with me. Thanks." I guess I'll go shower because I have nothing better to do. Yay me.

Out of the last 24 hours, I have slept 21.5. Go ahead and try to tell me I don't have a problem.

Here's my daily update. I'm not sure what to say yet, but here goes. The Queen of Sleep is back. Last night - 5pm to 9pm, and then after realizing what I had done and fixing it, about 10pm to 11am this morning. 17 hours of sleep. And I'd like to go take a nap. And I've doubled my does of the med that is supposed to help me stay awake. But I'd really like a nap. I am going to take baby steps to get better. Today I want to pour my meds. If I get that done it is a good day. If I also take the trash out, it is a great day. Boy and I are no longer dating. I got really angry. "I'm going to string him up by his toes and beat this shit out of him" angry. And yes. Some of the things he said to me would have totally deserved me doing that. And I'm not going to go into the things he said to me - but I'm so fucking tired of my friends trying to "fix" me. This is the 2nd email I sent to Boy last night: "I'm sorry the last e...

The Queen of Sleep Can't Sleep. Alert the news. I've now gotten myself all worked up and I need to figure out what is wrong with me and what I want and what I need and I need to fix it all before I can fall asleep. And we wonder why I sleep through the day? Maybe it has to do with me being up all hours blogging because I can't sleep. I can't shut my stupid brain off. I am now trying to figure out why I am bleeding. Let's go to webMD (my worst enemy - I HATE that website) and see what they say is wrong with me. Okay, so I am suspecting that maybe I have a yeast infection - so here are some of the things webMD has to say (my symptoms fit): "Rarely, the yeast infection may spread throughout the body. In systemic candidal disease, up to 75% of people may die. Even common mouth and vaginal yeast infections can cause critical illness and can be more resistant to normal treatment Yeast infections that return may be a sign of more serious diseases such as diabet...

Maybe why I haven't been able to stay awake is because I haven't been taking my iron - I swear, I am so stupid sometimes. I am chronically anemic and have no iron stores so if I don't take the iron bad things (like sleeping all day) tend to happen. Hahahaha I hadn't noticed I wasn't taking my iron until my mom asked me if I was - and then I remembered it's in my lunch meds, and no, I haven't been taking them because, WOW, um, that weight loss stuff. So now I am taking my iron again and hopefully the blood flow will return to my body, I will stay awake and be able to keep a body temperature above 50 degrees without being cuddled up in bed. And things are coming together for my costumes for the showcase - I guess I need to try them all on and sew what needs to be sewn, etc, but that would take time and energy - two things I lack. Oh well.

I still can't shake this extreme exhaustion. My mother is worried that my lungs are failing, as am I, and I just have to make it one more week. One more week until showcase is over and it is close enough to the trip to Italy to do home IVs. I will crap my pants if I have to be hospitalized - I don't want that. Although it'd be nice to lay in bed for two weeks straight, they keep waking me up and that's just obnoxious. This sleeping thing is interfering with my ability to get things I said I would get done, done. Like for the CF Foundation. And for my Great Strides Team. And for the Dance team. And etc, etc, etc. I don't know how I'm going to pull my shit together, but I will. Somehow.

Let's see if I'm more or less clever at 2am. I went to bed at 9pm hoping to get a good night of sleep before a huge day of dancing tomorrow. May not be quite as huge if one of the kids in our two-step routine can't make it back because of the snow. Then I might hit my head against the wall because we are going to suck. Less than a month until showcase. Are you kidding me??? **** I got my mystery rash again today. I woke up and it was SNOWING - and I had a cute, adorable, irresistible spring outfit planned out. Man, was I bummed when it was snowing. I ate breakfast, got said mystery rash, and went back to bed. My brother got into a car wreck because of the snow, so I was upset because I had asked for help, and now since my brother wasn't going to be able to come down, my parents were ignoring me. My mother yells at me because doing my laundry is hard. I'm sorry I get worn out when I do laundry, but I do. That's just the way it is. I started my laundry ...