what to call this day

So another day that went awry ending tonite with me looking on my blog for comments and finding none new. That made me sad. No that's not a plea for comments! It just makes me smile when people let me know they've been here. I've had another day of brain numbing words coming from people that have changed their tunes and I don't understand why, plus my own physical problems set me up for depression once again. I must be related to my dad.

It started this morning at 6:30 am. Kelly had just finished doing my IV's and said good bye before leaving for work. Once awake I always realize I have to run down the hall, wonder why that is, you can sleep thru it but once awake there is no way to go back to sleep without answering the call. Anyway, I get back in bed and immediately start bleeding. Not huge amounts, but very annoying because I'm afraid to lay back down and make it worse. So I try to sit up for a while and then finally go to sleep.

I had to get up early anyway at 8 to get ready for a doctors appointment. So off I go to see the doc's, crossing my fingers I get one I like. Traffic was terrible, it was stopped from the minute I got on the 57 to almost Brea, then a bit of free flow, then stopping for the next umpteen miles due to the left overs from a 5 car pile up. But I made it only 5 minutes late and no more got settled in the waiting room than I start bleeding again. I run into the bathroom they have in the waiting room (usually avoid that room like the plague) and proceed to mess up their sink, get blood on my jacket and try to figure out what to do. Finally I go out and ask the receptionist for help. She says come on in...well, it's kinda hard to pick up all my stuff and try to hold something to my mouth so I don't bleed all over your carpet. So she helps me and puts me in a room and shuts the door. Ok. Wait, wait. Well the bleeding stops except for the oozing and they bring in 02. Finally the doc comes in and I'm so happy, it's the aggressive one. She takes my chart to catch up and then comes back. I tell her I want surgery. Long story short, she said no. She said I have to balance this all....having surgery too often isn't good, it is risky and hard on me. She said if I keep bleeding for weeks, yes weeks, then they'll see. She said to rest and stay quiet at home. I got mad and told her I wouldn't live like that. It went on. Out of antibiotics, go to ICU to be desensitized if these I'm on now don't work, rest, but do normal activity, exercise, but don't work out... Every thing was so contradictory and confusing. It was hard for me to understand her today. She has a heavy accent but usually I don't have a problem. I think I was just so stunned and mad I didn't listen well. Then she really hurt me. She told me to get ready for transplant. That it would come sooner than I want it to. That I need to prepare myself.... I don't even remember all that she said. This is the doctor that has always told me if we can control the bleeding, I didn't need a transplant yet. Why the big change? Is she giving up on me too? It sure feels like it. Why?

We talked about my CT angio. She actually showed it to me. It was cool to see, but hard to understand what I was seeing. She did show me the "black holes" or hollows. The look like black holes, that's why I call them that. There are several. I also saw where things that should have a very thin lining is very thickened (like the stems on a bunch of grapes being overly fat) and the areas of total white scar tissue. There is little that looked good I think. I wonder if that is what has made her change her mind about me. I wish I'd never had that CT scan. They say my veins in the scan looked fine, I don't need surgery. They say my lungs look bad, I need a transplant. If I had never had that scan, they would be helping me for the bleeds and helping me think there is hope for much more time before a transplant. Right now I feel like I'm doomed to this all. And while I am waiting, I feel like that balancing act she is talking about is impossible. Don't have surgery, die from bleeding. Have surgery, die from surgery. Hmmmm. Fun toss up. I never felt that way about surgery until my friend died from the same procedure. But this bleeding is making my life impossible.

So, whatever. I try not to cry at the office, thinking just get to my car. I drive home and decide to stop for lunch. Another thing she got really mad at me about, my weight. So I try to put my new 02 bottle together and I can't make it work. No matter how tight I turn it, it leaks. I put it on so tight I can't even get it off, but it leaks. So I throw it on the floor, and just let it leak. I can do fast food without 02, I always do, but am worried because of the bleeding. So while sitting in my car, literally taking the keys out of the ignition, of course I start bleeding. I use up all my tissues and have to throw my water out of my cup so I can spit into that. How disgusting. I wait and wait. Finally I'm back to ooz but decide to go home instead of trying to eat. I'll just cry.

So home it is. I call Kelly and talk to him a little (at his insistence, I didn't want to talk while he was at work. I just wanted to know what time he got off today) and he came home early to help me. Help meaning just sit by me, listen to me vent, ask what ever he wanted to know that of course I had no answers for and then we took a nap. I would be such a basket case without him. But I don't want to mess up his new job too. When we were trying to nap, of course I had another bleed. And just a while ago, yet another. That makes 5 today. I'm supposed to do that for how long before they think it is enough? Shouldn't I decide whether or not I want to risk surgery? If I keep bleeding like this, there is no way I can go to school or shopping by myself...
I truly can't do this. Why have they given up on me?

As I was leaving the doctors, she is all smiles and tells me I'm one of their special patients and if she can do anything for me... I just shook my head.

I will keep trying to go on. I don't mean that in any kind of a suicide way, so no one panic! But I mean doing the things I need to do, and want to do. I'll try to figure out how to handle bleeding in public without panicking me or them. Know what's sad? I hadn't had a bleed in a week. Then I went to cousin lunch on Wednesday and school that night. Then today, bam. Is something as simple as sitting and talking, walking to class and sitting, that bad for me? Or is it just a coincidence? Who knows.

Oh, on an earlier post Carrie said I had been slacking and she wanted more posting, to make it up if I had to! Oh how I wish I was making this up. Sorry Carrie, no rose bush attacking me stories for a while, but maybe I'll check out the kitties and see what they are up to! Thanks so much for the Christmas pictures, that'll help my little book out a lot!