My memory of the story

Hi Everyone,
Well, I've had a few days to process all that has happened and am going to try to write it down. I'm writing it for my own purging and for those that are like me and need details, details! I'm not sure how far I'll get tonite as I am still having a hard time with my brain being a very sad little guy. I cry at most things, a song, 100 years by Five for Fighting, some hallmark commercial, something going wrong at the house such as blood still being in the bathroom... I've read Kelly's blog over and over and I can't get past him hearing me say I love you without breaking down. I figure someday when I can read that without crying I'll be making real progress. Oh, shit, now see, I'm crying.

So, deep breath, here goes.
Friday night, about 9 or 9:30. I'm just sitting on the couch watching TV. I had been out watering the lawn till about 8:30 as it was so hot. Don't know if that means anything or not.
But I felt the first rush of blood, different than anything I've ever felt before. I knew from the second it started, literally the second, that is was different from all my other bleeds however large and that I might die. I ran down the hall with no time to try to get to a Kleenex or sink. I don't remember yelling for Kelly, but he came in quickly. I think he could hear me breathe and splat blood in the sink. I ask for air in a frantic sort of way and then ask him to turn it up. Putting on 02 didn't seem to help, but maybe it did a little bit to help me before the paramedics got there. I couldn't inhale and started asking for 911. I kept saying I can't breathe. Every time I tried to inhale it was like being in the ocean only with really thick water and trying to breathe that water. I can't really remember Kelly calling 911, but I sort of remember him explaining that his wife had CF and was bleeding from the lungs.

I could hear him telling me it would be ok, that I'd be ok. We talked before about a study I had read about people who had stopped bleeding when they were told it was ok to bleed, but then when the wound was clean, they were going to stop bleeding and be ok. And it worked. So I asked Kelly a while back, that when I had a bleed to say that to me. I was trying so hard to think it too, it's going to stop, it's going to stop...but all I kept thinking in between that was I'm going to die, I'm going to die. I can't breathe.

Kelly stood beside me and I remember him putting his hand on my back and I just pushed him away, hard. I will never forget the look of hurt in his eyes, it kills me. I don't know why I pushed him, but when he put his hand on me it just felt so hot, like it was taking any last bit of air I had. I just wanted to have cold on me. I am now crying like a baby, because the last thing I want to ever do is hurt Kelly. He is my life. Then I just remember saying I love you, because I knew I would die then. I remember him saying it back and that's all I remember.

Cut to Sunday or Monday, I'm not sure. I do remember Leona and Connie coming into my room. I think they came one by one and just hugged me or kissed my cheek or patted my hand. I don't remember any words. Kelly says that's weird cuz I had my eyes closed the entire time I was on the vent. There doesn't seem to be any way I could have known they were there. I remember Kelly and Wendy standing over me...but again no words. I remember Kelly's voice saying it would be ok, that I was ok. But I don't know when.

My first real memory is of waking up to Lynn. I don't know what we talked about, but I started crying because I thought Kelly hadn't been there the whole time! Apparently he had just told me he was going to go eat and take a shower and I had said that was fine. That was shortly after I got off the vent. The med's have made an early alzheimers patient out of me! Lynn had to call Kelly and tell him to come back. I think it was Monday when I remember Michelle and Allen, Liz and AJ. They were all there, but I think at different times. Or wait, Sunday if they had to leave for work? Anyway, Michelle and I cried because she had to go home and I didn't want her to. She didn't want to leave either, but she had to go to work. At that point, thankfully my memory was so lost, I forgot that till later. I remember saying I had a boy pee pee...what a doof I am. I remember my catheter coming out, I think that was Monday. I was thankful it didn't hurt. I remember Kelly being there, then leaving to get something for my transport to Orange and AJ stayed with me till I left. I remember the paramedics transporting me to St. Joe's and being very dizzy. (me, not the 3 female paramedics) And telling them where the mall was and the food. They liked that idea.

I know on Monday I had some phone calls, but I've lost that already. I think I slept a lot except for my vitals being taken 100 times. Kelly came, Lynn came, Dr. Y came...I knew that I was NPO after 12 so I could have surgery the next day. And I was so very hungry. I heard stories about Lynn having KFC and me wanting it! But I also heard stories about my barfing every time I tried to move, so no KFC for me! That was at San Antonio's not St. Joe's.
I know that I was very tearful. Everything scared me. I could still feel some gurgling in my lungs and was terrified that I'd start bleeding again. I believe I took a shower on Monday night and finally got the last of the blood off of me, from under my nails, out of my hair. It felt wonderful. Then Tuesday I had surgery. It didn't last too long, only about 2 hours. But I still felt scared. The surgeries make you cough up gunk, and I had lots of old blood to be rid of still. Every time I coughed, I thought it was blood. I think Kelly and Lynn were there. Kelly was not there when I went into surgery because the air conditioner was broke and he was trying to find a fuse for it. So Candice, my drug study person came to be with me. She's been a huge help. Kelly got there right as I got out of surgery. Lynn was there later.

Repeat on Wednesday except Kelly was there early. Rest on Thursday and home on Friday.
It is usually me who is fighting to go home and Kelly telling me to just rest and take it easy. This time he wanted me to come home and I wanted to stay there. I was like, nope, I think I'll just live in the hospital now. I'm still dizzy, my back and chest hurt a bit, I'm tired and feel like I'm going to pass out often. Last night was my first night in my own bed. Ahhhhh. I went to bed late after IV's and didn't get up till 1. I wouldn't have gotten up then either but I was starving! Today we went to eat, to the grocery store after a two hour nap on my part.
We got the bathroom cleaned up, I couldn't stand the blood any more. It was pretty clean, someone washed the rugs and towels, but there was blood on the walls, the counter, the mirror. I couldn't stand looking at it. I think I've talked to or emailed most people. I know Kim has called a couple of times, Merle called, I think on Monday and was surprised to hear me answer the phone, and a few other times. A friend or two has called.

I am re reading this and hear it all coming from my head. That's because my heart still is so sad. I don't know how to get past this. I don't know how to do anything alone any more. I'm always afraid. I've already had some blood in my sputum. Just miniscule amounts, but it scares me. I am on 02 most of the time. I don't feel very great without it. I had an 'almost' passed out in the shower at the hospital and couldn't breathe. They had to put me in the bed with my head down, crank the air.... what if that keeps happening?

Kelly keeps reminding me I was on a vent a week ago, plus two surgeries not even a week ago. So I need to give it time. Kelly is going to take off work for a few weeks to help me, to try to get me strong enough to be ok. But who is going to fix my brain? We were coming home from the grocery store and the Five for fighting song came on. I turned it up cuz I really like it and half way thru I just lost it. I crawled into bed last night crying and I couldn't stop. Kelly is like my "bankie" and I need it all the time. That has got to be annoying. And conversation...forget it. I turn it back to me and this last week. So if anyone wants to hear it I guess I'm needing to say it over and over! Hopefully this writing will help too.

I do like hearing the stories of when I was out of it. I'm so thankful I can't remember all the horrible stuff. Being suctioned, crying and crying, thrashing against the restraints, saying no, no , no in sign language. Although apparently I'm a funny girl...oh polite too, guess I told Donna thank you very much for coming to see me! I don't even remember her being there.
I like knowing I told everyone to back away cuz I was gonna barf, but Liz held the bucket anyway. I like knowing I was signing to people that they were trying to kill me, he heeee. I don't like all the bruises on my arms and legs. Guess I was not too happy either. I was hurting I told them and I guess they woke me up enough to ask me if they took me off the vent and it didn't work, did I want to go back on and I said yes. Yea me. Of course you better keep trying.

I thank Merle for getting there so quickly, and my sister for being there for so many hours. And for everyone who helped Kelly just by being there. I'm so glad Wendy stayed with him and kept him company. I never knew so many people cared about me and that makes me happy and sad all at the same time.

So, long story short, drug induced alzheimers is good, barfing is bad, surgery is painful but necessary, even if two days in a row. Friends, family, priceless. Thank you.