It's time to blog

So, what about the mean lady at the grocery store, you ask? Well, I had finished my shopping and was putting my stuff in the trunk. I parked in handicapped. There was a trashy red car next to me with this huge, huge, huge lady trying to get out. In the time I put my groceries in the back, walked my cart back to the holding area, and was on my way back to my car, she still hadn't been able to get out of her car. As I passed behind her, she yells, "and what's so handicapped about you?" in this really rude voice. I turned around and just looked at her, my 02 in my nose. I glared the glare of the killer eyeballs. She should have whithered and gone away, but she didn't. She goes, "oh, well, then I guess it's ok" I just stared at her and said "you have no right to be so rude." She starts mumbling to herself that she just doesn't know these days, about people. I felt like saying, just cuz I'm not fat and trashy like you doesn't mean I don't have my own problems. The only reason I could see for her being in handicapped was the fact that she weighed 500 lbs and couldn't get out of her car. I would never accuse her of not needing to be there. It just really pissed me off. I always get dirty looks, especially if I'm only going in somewhere for one thing and don't wear my 02. Why does everyone think they know,or have the right to know, what is going on with people they don't have a clue about?

Ok, so writing it down doesn't make it sound as bad as it felt that day. But I was mad!!!

And next subject...hemoptysis..or bleeding from the lungs. I am so MAD, ANNOYED, SICK OF IT, and scared. I went to have a CT angiogram on Thursday the 1st. This was supposed to show a good view of my veins and arteries to see if there were any that were enlarged, overly infected or that looked as if they were going to break. They didn't keep me there or call back that day, so we assumed there were no immediate problems. Two months ago I bled about 8 times in 28 days. Small amounts, not such a big deal. In the last 30 days, I had no bleeding at all. Very good.
In the days after this CT...I bled Saturday night, a good size amount, Sunday morning, Sunday evening, Monday afternoon (at the movies, I'm sure Merle loved it) Monday evening right on the way to school, Tuesday just after midnight, and then Wednesday about 4am.

On Monday I talked to the CF doctor. He tells me the CT angio showed nothing, everything is fine. I tell him I'm bleeding daily and it isn't all fine. I wanted to know if the flushing of 200cc's of contrast dye could have been causing this? If my already weak veins were pushed too hard and are now bleeding? He says if it was going to happen, it would have happened on the table. I still have my doubts and think the dye caused this. Anyway, all he wants to do is put me on IV's. Well IV's have never helped me with bleeds before. I haven't started them yet. Maybe tonite. If I keep bleeding though, I will insist on having another surgery as obviously something is wrong. I really like this doctor, but he is so the laid back of the three I see, he always just wants to wait and see. Well, I don't feel like I have time to wait any more. I DO NOT want to have a repeat of last year. I don't just mean in July. I mean the entire year of being on pins and needles, of having 5 surgeries. I want to be proactive and take care of it now. I'm so very frustrated.

Oh, and while I'm talking to him he lets me know that the CT did show a "hollow spot" in my left lung. I can't remember if he said the upper or lower, but it's left back. I didn't know what a hollow was. Basically it's where my lung has rotted away and there is no lung tissue left. Yep, my lung is gone. Not the whole thing, maybe 1/4th of it or more. I just felt sad. He said that it can be completely gone or just a slimy lump of rotted tissue. Like decomposing. How disgusting. If it causes problems in terms of holding puss or infection, it may have to be removed. At this time we don't think that's what any of my problems are. They wouldn't know if there is any infection unless they went in I guess. But for now, nothing will be done.

It is just so hard to keep hearing more and more bad stuff about myself. I feel good. I don't feel sick. I have put myself on prednisone this week because I was having such a hard time breathing, so now I feel really good! I wish I could be on it all the time, but that's not an option. But when your brain says "I feel good" and your doctor says, "Your lungs are rotting away", it's hard to make it all make sense. Wanting to have surgery to take care of one problem and having the doc that says...let's just wait...very frustrating. If I had spoken to the more aggressive doctor, she would have had me in that day probably. Maybe not. I just don't know any more. It hasn't been large amounts, meaning a cup or more, but I'm sick of not feeling like I can go anywhere because I might bleed. Monday when I put my hand on the doorknob to leave for class and started bleeding, I waited for it to be fairly done, then grabbed a bunch of tissues and left for school. I figured if I was still oozing by the time I got there, I wouldn't go. ( I always ooze for a while after the original bleeding is done ) But it had stopped enough that I went to class, walked very quietly and slowly and prayed "Please don't bleed, please don't bleed." I don't want to stop doing what I do, but I'm afraid. Kelly is even more afraid. I wish he could be given the same drug I was given in July so that he would forget too. He has nightmares about me bleeding to death, and I have nightmares about watching myself bleed in the mirror. We're both tired.

Anyway, yesterday was a visit with the transplant surgeon. That is too much for my fingers to type now. Or rather, too much for my brain to assemble. More bad news, more scary stuff, more cognitive dissonance. So till I blog again....I think I'll go eat sweets.