It's that time of year again. It's now been six years since I've walked a step. Before that I did have a great deal of trouble with balance and couldn't get out of a chair on my own but... Anyway, I've been thinking about this lately quite a bit. Things I really really miss:

- Going to the bathroom whenever I want to, since I can't go on my own and someone needs to transfer me out of the chair. This kind of leads to the second thing, drinking whatever I want. You tend to cut out things that would make you have to pee more when you have limited access.

- Standing in the shower. I still take showers, but I sit in a shower chair and need help with many things. I really miss standing on my own in there.

- Dancing. I loved to dance. I still would really. Dancing was like a stress relief... Turn on the music really loud and just move.

- Being able to get out of bed whenever I want. When I can't sleep sometimes there is nothing more I want to do than wander around the house for awhile. Also, being able to roll over in bed myself. As it is I have to call someone and I hate doing that.

- Going into other people's houses. It's not like I haven't been in anyone's house since I've been in a wheelchair, however, it's a huge pain in the ass. I always had to make sure there was enough people to carry me and the chair up the stairs. Also, now that I have an electric wheelchair nobody is going to be lifting that with me in it.

- Driving and being able to get into other people's vehicles. I can't just jump into a car and I stopped driving myself about 6 years ago. I can get into our minivan (the front passenger chair turns sideways and moves out and down for easier transferring) but it's only really practical for fairly decent weather. In the winter, it takes a long time and I'm freezing and man I miss just getting in out of a car without a huge production.

- Not being stared at. When I go anywhere there is always someone (or everyone) who has to stare. Part of it is the respirator/trach thing as well (and people did look when I could walk and had just the trach as a difference), but man... It's the worst when people rubberneck.

- It's harder to be close to people when in a wheelchair. The chair is always kind of in the way. It's harder to hug someone, to kiss them... snuggling on the couch, whatever. It's just more difficult. It sucks.

Also, when you have people taking care of you all the time, which requires them touching you, most of time in places that people wouldn't normally touch you, except say a significant other... Doing things any normal person would definitely take care of themselves... You stop feeling when someone, anyone, touches you. When someone tries to touch me unexpectedly I tend to either jump or flinch or both. If someone hugs me or if I have a boyfriend, I have to remind myself to feel. If anyone touches me in a way that a caregiver would it doesn't even register. I'm not sure what I'm missing there exactly, but it's definitely something.

Mostly because we hardly had one again. It's warm out today though, finally.

I got the stitches out of my arm on Thursday. At the same time the doctor took a look at my stomach tube and said it was healing ok even though it looks kind of bad. My arm hurts once in awhile now in the inside. I think it's the little disc thing they stuck in chaffing a bit. It's weird, it feels like someone sewed a nickel under my skin. Except it's thicker than a nickel.

My sister's fiance broke up with her. I keep just saying they broke up and for some reason assume it was her idea. I'll say it that way because it was not her idea at all. She is moving in here (with me and the parents) for awhile. She is bringing her 2 cats and german shepherd, which should totally throw my cats for a loop. Bit of chaos thrown into the mix. Anyway, I remember what it's like to be dumped by the guy you thought you were going to spend the rest of your life with... It's really really tough. Everyone always says stupid bullshit to you like "It's probably for the best" or "It wasn't meant to be" or "It'll be okay". My personal favorite was "You'll find someone else". I always hated that crap because in the beginning it's not okay and frankly even though you might know you will be okay again someday, you don't really give a fuck. In fact, even if any of those statements are true, you don't really care for the first few months. In any case, I never thought they would break up and I feel really bad for my sister because I know what she is going through. It's so hard to lose your whole life.

So I go the procedures done on Monday and both went well with no complications. The permanent IV hurt quite a bit just because they didn't give me very much sedation (I wasn't even relaxed much less sleepy) and local anesthetic hurts going in. It was also kind of disturbing to watch a bit of it. I couldn't see my arm but I could see their hands and all the stuff they were using. Apparently, the tube goes in my arm and threads all the way up to just outside my heart. I find that kind of spooky. During the second procedure they gave me enough drugs so I fell asleep. It went ok as well but has turned out to be the most painful of the two. It hurts to move or touch the area (they fixed my stomach tube by putting in a smaller tube and stitching it up). I'm a little bit worried it's not healing properly just because it's so painful. I'll be at the hospital on Monday though for an enzyme treatment so a doctor can check it then. I've been taking Tylenol 3s and they seem to help somewhat. They don't do much for the stomach pain though really. I feel fuddled when I take them during the day and they keep me awake if I take them before bed. I'm also on antibiotics for a bladder infection and I'm not sure if they are working or not. I don't want to finish them up and have it flare up again, ugh. I'm tired of feeling like shit.

My parents started their 2 week camping holiday on Monday as well and it feels like years since they left. Since we only have 3 caregivers now it's a bit tough to organize everything properly sometimes. It's a bit tougher since I'm tired, fuddled and in pain alot of the time. I can never decide what to eat either, I'm so terrible for that. It's kind of frustrating really.