One Day at a Time With Cystic Fibrosis

Last post

2007-05-13T09:32:00.000-07:00

Hi everyone. This is my last post on Carol's blog. I have started my own here. I want to thank everyone who came here everyday or once in a great while. You'll never know who much it meant to her that people read what she wrote and shared her pain and joy of life.

Yesterday

2007-05-12T09:11:00.000-07:00

Yesterday was the best day I've had since, well... since. I genuinely felt good and happy. Not in a manic way like "I'm going to be happy if it kills me". But I felt centered, grounded and focused. I thought I'd just share that with everyone because the last post seemed kind of bleak. I am amazed ever day about this process of loss. The process of losing love is equal to having it. Simply amazing. For me anyway. From what everyone says, it's different for everyone.

Some of you may or may not know that a friend of mine died six days after Carol. I am very close now with his wife, Jess. In all of this, it is nice to know I'm not alone with the loss. We talk and hang out a lot. For awhile we thought about getting T-Shirts made that say "It sucks to be Us." I was told about a service called the Grief Recovery Institute. I looked it up and checked it out. I talked to Jess about it and we both signed up. It is for three days in Sherman Oaks on the 22 June. We both are committed to getting through this. We both don't want to be the person who 5 years later, can't walk down a Hallmark isle in a food store. We both want to continue living life and enjoying everything it has to offer.

I've been exercising, sleeping better, praying, meditating, writing in a journal, and staying close to friends. I'm not sure which one is working to help me so I think I'll keep doing all of it. My gratitude goes out to everyone who has called, email, and come over to check on me. I may not return your call but know that it helps a lot.

Well, I'm not as good as Carol at blogging but I try.

May 7, 1962

2007-05-07T16:29:00.000-07:00

Today would have been Carol's 45 birthday. She would have been so happy to have another birthday but would have been so sad she was getting older. I think it's a female thing. In a few days it will be 2 months since she died. I miss you.

I have been sad a lot. Depression is like a black sea that I am in the center of and can't see the shoreline. I tread water but it is a heavy thick water that slowly pulls me down. I look around and everything reminds me of her. I have tried to do what I can, but nothing takes the pain away.

I tried to go back to work but could not control my emotions and I couldn't seem to concentrate very long on anything. I plan on returning to work on the 30 of May. That gives me a month to get my shit together.

I'm not sure why I'm writing here. This is Caro's blog. She expressed herself here the life she had one day at a time with Cystic Fibrosis. But today was her birthday and I didn't want it to go unnoticed. I don't think anyone comes here anymore anyway.

Carol, I hurt still and miss you so bad...

#1fan

Carol's first post

2007-03-20T07:55:00.000-07:00

Almost a year to the day, Carol made this her first post.

Thought I'd let her tell it in her own words.

Kel

Carol Sweeten 1962 - 2007

2007-03-15T17:14:00.000-07:00

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Update: 16 March 2007

Viewing will be on Wednesday, March 21, 2007, Family from 4 to 5 P.M. and all others from 5 to 8 P.M. for friends, at Todd Memorial Chapel, 570 North Garey Avenue, Pomona, CA, (909) 622-1217.

Her funeral will be graveside services at Pomona Cemetery 502 E. Franklin Ave. Pomona, CA 91766 at 11 A.M. on Thursday, March 22, 2007.

Kelly has invited everyone back to the family home in Upland, 1362 Darlington Avenue, after the services.

Everyone who wants to attend are welcome to come. Everyone.

***********************************************************************************

Carol died today. I will post more later.
I'm not doing good right now.

Kel

Two topics, Lungs and my weekend

2007-03-07T21:50:00.000-08:00

First, lungs. Well, I had an interesting call last week, that I have had to take time to digest. My transplant coordinator from USC called. He, another nurse and the social worker were in the room with me on speaker phone. They wanted to talk to me about living donor transplant. They are worried about my bleeding and they don't want me to have any more embolization surgeries as they are so risky. As I've talked about, each time I go in I risk paralyzation, stroke, numbness, or chronic pain. Also, all the extra veins and arteries growing into my lungs, makes the transplant harder. Also as I have said, with my blood type and size, it will be a long wait till a cadaver comes available. So they are worried and told me it might be a good idea to start looking for donors.

That scared me and I had to wait a while to think. Then I emailed my wonderful cousin Darrell about my situation and ultimately asked him if he would consider donating a lobe. He was willing to talk about it and help if he could. So I called and he was actually excited about helping me. He had talked to a doctor friend of his and gathered a little information, but to no avail. He is the wrong blood type. Thanks anyway Darrell, I thank you for wanting to help!

So while I have one potential donor (my best friends daughter) I need to line up several more to be tested as I don't even know if she will work out. So here is what I need.
O+ blood type. No smoking, or having not smoked for a lot of years. Under the age of 55.
5'10" or taller. They said look at tall males, but my friends daughter is 5'11 so it doesn't have to be male.

I feel really weird and awkward asking everyone, but it seems a lot of people read this and maybe someone will know someone who fits the bill and would want to be tested as a donor.
I know some people want no part of it! and that is ok! I have no problem with people not wanting to donate. But some people know people who would love to help, but I can't think of who they are, so maybe they'll write to me. My email is cutecarols@gmail.com

On a good note, they said my antigens are 0, so my chance of rejection is really low! Yahoo, one good news.

Now lobe donors, line up! hee ehee

As for my weekend, Kelly and I went to Michelle's in Arizona. We had a really nice time. I went out shopping a little bit (only a little cuz there isn't much there) and out to eat. The wind was blowing so hard I had to cover my nose so that I could breathe in my 02. I was so tired by the end of the day, but it was nice. We got there late Friday, leaving after Kelly got off work and then left Sunday after I got ready, so we really only had Saturday to play around. Kelly went to play craps on Saturday night. He actually doubled his money! Yipee. Kelly and I like road trips and being together so it was nice. The drive, not so nice. Lots of traffic. I feel sorry for people who live in the high desert and have to do that commute every day. yikes!

So that's it for me. Contemplating not making it to transplant, having to ask people for a body part just in case, hoping I don't bleed any more before a cadaveric transplant...and going to cut quilt parts at my sisters tomorrow night. That will be a blog in itself!

2007-03-02T02:04:00.000-08:00

Lizzy from the United Kingdom, how do I get on your blog? When I click on your name in the comments section, it shows me your profile, but no way to get to your blog. If you know what I should do, let me know. I'd love to read your blog!

Correction

2007-02-28T22:54:00.000-08:00

I have to make a minor correction to my post titled, Wicked. In it I wrote Kelly was snoring that puffly snore. I was mistaken, he was snoring a manly man snore. He is no Puffly guy.

I stand corrected:)

Wicked

2007-02-27T12:12:00.000-08:00

The title sounds like I'm going to talk about something mean and wicked...but I'm not!

The play was wonderful!! It was almost as good as in New York. I have to say almost because it was, well, in New York. The whole night went well. We got there really early so we got to park right across a small street and because of my handicap placard we got to park right up front. Then we got inside and yikes, no elevators and my tickets were for up in the top. But Lynn carried my oxygen and we just took a little at a time. The seats were great, the audience quiet (I'm used to movies where no one can shut up) and the show was wonderful! I forgot how funny Galinda was. I think the set was identical, if not close to what I saw before. We laughed, got goosebumps, a little teary eyed and a big smile at the end.

The usher lady was very helpful in getting us in before everyone else and letting me go first in the bathroom line. I had to laugh at that, my lungs are broke, not my bladder! But Lynn said there were benefits to going out with me, parking up front, first in bathroom lines...see she rolled my oxygen so that she had to go in first with me too, heee heeee, sneaky. We were trying to figure out how we could get to be first in the snack line, but that didn't happen. Darn. I was hungry!

It was funny on the way home that Lynn said Galinda reminded her of me in high school. I was all "WHAT?" I was smart and was not popular and was nothing like Galinda. We were laughing. Funny how you think you are and how others see you.

On the way home we were starving, but there was no where to go. My mission is to find a Denny's by Lynn's house, or what?, a Coco's, are they open late? So I had to come home and scrounge the fridge and there was nothing there either.

The next day Kelly and I just hung out. We were both tired, it had been a really long week. So we took a nap and I was thinking it was total bliss even if just for a few minutes. Kelly and I were resting, snuggled together and he fell asleep with that little puffeling snore, Carrie was asleep on my pillow with her head resting on my head. The blankets were warm, nothing really needed to be done, ahhhhhh.

So that was my weekend. A perfect weekend with the people I love. (Yes Carrie Carrie is a people, just a furry four legged one)

Bog, Blog Blog

2007-02-23T11:28:00.000-08:00

Well, I figure the only way to get the picture of the blood to the bottom of the page is to put other blog posts and move it down. So here I am.
Not much new, I'm still in pain and now I'm having chills and last night, night sweats. Great.
But I refuse to get sick.
Tomorrow night I'm taking my sister to see "Wicked" at the Pantages Theater. I will make it. I will not cough all night. I will not bleed. I will not sweat. Got it?

Anything else? Hmmmm. Was supposed to take in my taxes today but I feel like crap and haven't got them put together so I had to call and cancel. That's the second time. Once the Friday I went to the hospital and now today. I've got to get my act together!

I did go and have lunch with my friend Darcie yesterday. We went to Chili's and had a nice time.
We can talk like there is no tomorrow. What do we talk about? Who the heck knows?

Mmmmm, the weather is cold? I like the rain.
My house is a mess.
I need to gain weight.
I need to get stuff ready for transplant.
I'm tired.

Ok, one blog down, maybe the blood picture will move down a bit!
Bye

blood and hubbies

2007-02-20T20:56:00.000-08:00

So I see that my wonderful hubby, who never, ever, ever has time to put a picture on my blog, because he doesn't know how, really he doesn't, found a way to put a picture of blood on my blog. Such a helpful guy he is. That is a pic of the first bleed of the day Friday. It is the smallest of the bunch. Try picturing this being thick and texured, not like water. It was almost like jello as it starts to thicken. And the sink is clean, that's just a shadow you see! Anyway, I was trying to aim so that the doc's could see that it was bigger than the drain hole, since that's pretty universal in size and sorta taller, but it didn't show that it was thick.
Anyway, just wanted to explain what the heck that was.
Thank you so much honey. Now do you think you can remember how you did this and put something pretty on here?

2007-02-20T14:49:00.000-08:00

Hi everyone,
Just thought I'd write an update. I just got out of the hospital yesterday. I had been bleeding again, a lot. Not a lot in terms of blood, but a lot of times a day. For a week, 2, 3 or 4 times a day. I really wanted to have surgery again, but my doc's said no. They just put me on IV's which I knew wouldn't work. Then I had a week of no bleeding (nope not due to IV"s because I got mad and didn't start them till 5 days after I was supposed to) and then on the day I was to go to the doc's, I started out my morning by bleeding more than the other week. I bled again at the doctor's office, and they still didn't want to do anything. I was so frustrated. I knew it would just get worse. Well, I had 3 more that day for a total of 5.
By Friday, I had a large one that seemed to just go on forever. I actually got a stool so I could sit down with my head over the sink. It finally stopped, but 3 hours later it started again. My husband just walked in the door as I was getting the stool to sit. So I called the doc and this time talked to a different one. Told him I just couldn't do this, that the bleeds got much worse that day and I even took pictures so they wouldn't think I was faking about the amount just so I could have surgery. He called radiology and had me come in, to have surgery the next day. As I was trying to get ready and pack a bag, I had a large, long bleed. My husband was so afraid to drive me to the hospital, it's about an hour away. We were trying to figure out each hospital en route in case it got to be too bad. But I made it. Got in a room, long story, but moved to another room and promptly started bleeding. A LOT. The nurses were freaking out. My husband was out getting my stuff from the car so I was alone. I actually clogged up the sink because clots kept coming out and had to move to the trash. It was a long hard bleed. Finally it stopped. It was so weird then because they were trying to get me settled, trying to clean up the mess, and one of the nurses was putting another extension on the 02 tubing so I'd have more room to move. When she pulled it apart and the 02 stopped, I immediately started bleeding with only about 5 minutes rest from the last time. It was again bad and scary.

Well, finally it stopped. I was too afraid to go to sleep, but just read and stared at the wall. About 1 am, it started again and I had two more. Finally I made it to the morning and had surgery about 9am. The surgery went well in and of itself. But they had to block some significant arteries or veins and I'm in a lot of pain. My arm hurt so bad as one of the arteries also went to my arm. Plus as soon as I was able to sit up, I started throwing up. Miserable. That went on for 2 1/2 days. We tried all kinds of pain med's but nothing much helped . ( no not for the throwing up silly, I was on something for that too, can't remember the name, but each time they put it in my (IV, I threw up) I'm just doing a low dose fentanyl patch and Motrin for the inflammation. The surgeon said that I would be in pain for a while, that they had to go deep and do a lot of repairs. He said each time I have to do this it is going to get worse and worse, as they have to go deeper into my lungs and the veins are being recruited from all over so that the other body parts will hurt too, like my arm. They saw veins growing from my diaphragm, something they've never seen before. And there are a lot in my shoulder area, upper chest, that they couldn't get too but they will in turn be a problem.

So, I'm home, feeling sore, but much better than bleeding. I'm hoping I will have my transplant before I need to do this again. So much bad news about my health in such a short time is so hard to hear. But it looks like transplant is the only way. Now if I can only make it. Deep sigh.

So that's it for me. I have to go figure out what to have for dinner. I'm not sure which is worse, having to cook and clean or having to sit at a restaurant. Hmmmm, sleep, I'm sure that will help. Think I"ll do that!
Bye

Coming home today?

2007-02-19T09:53:00.000-08:00

Carol was admitted to the hospital on Friday night. The frequency and volume of the bleeding kept increasing. Surgery was Saturday morning. After surgery, she was in a lot of pain. She has been throwing up anything she eats since the surgery. I'm taking the day off and doing things around the house and then go to the hospital. I just talked to her and she said she thinks she will come home today....

Please, no visitors other than family or very very close friends. Call me before you visit to make sure she is up to it.

Kel

what to call this day

2007-02-16T00:26:00.000-08:00

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!

trying to stay awake

2007-02-12T21:47:00.000-08:00

So, not so many people are looking at my blog it seems, so I guess it is ok if I write just random thoughts!
I have to do IV's at 11 to 12:30 or so and I'm really tired now so I thought writing would help keep me awake. I have been feeling so poorly since starting IV's. I am itching terribly, my head is pounding and I think it might explode, my muscles ache like the flu, I can't keep any food in me, and I feel like I'm going to pass out every time I walk around. By walk around I mean down the hall way. So I'm hating life right now.

My friend Cheryl went to the grocery store for me today. I was originally going to ask her to go with me but today I didn't think I could make it walking around the store. So she went for me. It helped so much. I ate a bowl of chicken noodle soup and felt ok enough to stand up to take a shower. I'm sure the kitties and Kelly are glad about that!

So, people who read my blog a lot might remember a post I wrote about Kelly's job and his uber stupid mean bosses....and then that blog was gone? Well, I was politely asked to remove it as someone at his work read it and then took it to the bosses. Fine. I didn't care as Kelly was looking for a new job any way and everything I said was true, but I did as requested. Well, Kelly has been at his new job since December. He likes it so very much. He likes the people, he likes how they are direct with what they want and even trust Kelly to do his job. He isn't micro managed, back stabbed and harassed. And then, like someone coming to you out of the grave, he gets a review from his old boss. It wasn't asked for, it isn't needed (they have another system where he works now) and it is a moot point. But his boss sent a review and said they had to have it back right away. It is so full of what I call slander it is ridiculous. Every statement about Kelly ends with a dig such as he can do such and such, but he shouldn't be taken by surprise. What does that mean? He can't handle surprises? He let's the job go until he's surprises with the mess? Either way, it is just stupid. It said he shouldn't make commitments as he can't honor them. Excuse me, are we back to me almost dying and him taking time off of work? It went on and on with things that are just lies. It even says he was given one person to do something and that person quit....implying that it was all Kelly's fault for someone finding a better job? Then he was dinged on not finishing a project and writing all the procedures when in fact he was "given" the new job and no training what so ever only a few weeks before he left. With all the crap he was given did they think he would just work from or after his new job (the real new one where he's at now) to finish something they never taught him to do any how? I know I'm rambling but it is just stupid. So he wrote a comment back that he didn't think this review was accurate, that no one is available 24/7 (oh, that was one of the criticisms, they said he should have been available 24/7 and no one could reach him...what, they had his pager, his cell, his home #. How come when I called I could always reach him at his desk?) and that was true when he was out of the office due to the illness of his wife, that it wasn't his fault if someone quit and he was without support of management when he was there, so how could he perform his job to any standard let alone get improvements made? These are my words but that is the gist of it.

He let his current boss read the full evaluation and his boss said he also received something else, but hasn't told Kelly what it is or what it says. It's like they can't stand that he has moved on and is doing well. The current bosses don't care at all what it says. They have told Kelly that sometimes you just end up working with someone who is intimidated by your skills or is just a jerk and they treat you badly. All they have seen from Kelly is good work and they are thrilled to have him. They said that he has done even more than they hoped for when they hired him.
So there :D old bosses. You are out, you can't hurt Kelly any more. In fact we are finding out that there is a work benefit for time off for medical or family medical, that can be figured out before any emergency comes up, and then you have, I forget how many days you can take off a year, but there are no repercussions from it. Funny how the other job never told him about this. He has also been told how they demoted him without any warnings or being written up, is totally not allowed. That the HR person should have stepped in. Kelly let them know that there is no HR where he came from. And the things his first boss said to him when he got the promotion...could have been reason for that person to be written up... I don't know but it was not ok and would never happen at a true facility where there were people to monitor these people and their behavior.

So we're happy, Kelly is happy and he just keeps on doing is job and helping everyone he can!

Next...I got turned into collections again. Are you ready for this, it is for the huge amount of ...da da da da....$35.00 I am so sick of this. I called and again, they didn't bill medicare. And the letter says that CHOC has a new system and may never have even billed you for this....

So they don't bill you they just turn you in to collections? Is that legal? I'm not paying though, I'm making them do their job and bill medicare. It would be easy to pay and make it go away, but it's the principle. I hate these people. And I continue to get a letter a day, even thought I've talked to them. I talked to my other insurance about another matter because they have not been paying bills. I was told it is all taken care of...but today all the statements came again and nope, they still aren't paid. They are not going to be happy when I call tomorrow, because I feel like crap, and if I have to use my limited energy on them they are going to hear it!

So that's it at the Sweeten household. I didn't go to school tonite and we watched Lost and 24 (tivo'ed). Kelly is sleeping and I'm itching. You should see me in between sentences! itch itch itch.
Well, guess that took a little time, now I'll go watch General Hospital. There's a hostage situation you know? Robin has been shot, Sonny beaten up and Elizabeth is in labor...what's next?

Ok...USC visit

2007-02-10T18:58:00.000-08:00

So, as a few days have gone by and my brain has rested I guess the USC visit wasn't too bad. I met with the director of surgery. I think that was his title. Anyway, he went over how they do the surgery, where they cut, how long it takes, where they attach the new lungs. All things I already know. But then he started telling me that with all my extra veins and arteries that keep growing, the surgery would be harder (for the surgeon) as they would have to take a lot of time either cauterizing those veins or doing something so that they wouldn't bleed. It sounded like it will make things harder. He also talked about having to put me on a heart lung bypass for 3 or 4 hours of the surgery. I think that is so that they can get all the veins taken care of. I thought he implied that it would be something they needed to do in my case, that they didn't do that for every one's surgery, but since I've been thinking about it after talking to my aunt, I think maybe they do do that with everyone. I'm going to have to find out about that. But it still freaks me out. He talked about time in the hospital, like 3 weeks. And we talked about my score. He said that he felt I would be placed in the low to mid 20's range. He didn't know my calculated score. Now remember the scoring is 0-100 and the higher the number, the higher on the list you are. So low 20's sounded good to me. But also remember that people get transplanted in the 30's and 40's, it just depends on the situation. He let me know that the average wait at USC is 96 days. That almost made me faint. 96 days? I don't think I'll be ready in 96 days. I thought maybe next year or so. But he did let me know that one person was called in 12 days and another has been waiting something like 272 days. He doesn't know that I know Mr. 272 days. He is anxiously waiting and I hope his lungs come in time.

Anyhow, further adding to the having no idea when it can happen is the fact of my blood type. I'm 0+ and can only accept blood or organs from other 0 people. But if I were an A or B...I could accept an organ from the type I was (A or B) and from the 0 people and I think there's other combinations. So my availability of donors is smaller and when an 0 does come up, everyone can use that organ, not just other 0's. So that can make it take longer. I told him I was ok with that!

So I came home with my head reeling...thinking of 96 days. And of course I had to have a couple bleeds that day to make sure I was even more confused. After I got home I wrote to the transplant coordinator to ask a couple of questions. He let me know that my score had been calculated and that I was actually higher than average. Higher??? What is the average? I forgot to ask. He also said my bleeding played no part in my score, that it was based on all the tests I took, not anything else. I thought that the bleeding was what put me higher. How can I feel so ok and be told that I really truly do need a transplant and that if I had no bleeds (which are our major concern) that I would still be scored higher than average and be told I need a transplant?So they tested my heart pressure which is a little high as shown by my right heart catheter, my ability to walk as far as I could in 6 minutes ( I thought I did so good), my PFT's, did anecho and ekg...what else did I do? My kidney test, at least they are fine... my psyc eval should have knocked me out of the running I'm such a mess :) I can't remember what else.

So to make a long story even longer, I have absolutely no idea what is going to happen or when. I'm going to start making my lists. Lists of who to call for what, who can do what when, who will just want to know, my advanced directive, my will, my power of attorney, my phone list....

So that is that. This weekend I'm not doing anything. I talked to my Aunt Sharyn for about 2 hours Thursday night. She really helped me by just letting me talk. I think I repeated myself over and over and she's heard it all before when she was here. But she also gave me a lot to think about helped me to just absorb it all. She also talked to me about a friend in her life that just died, and as morbid as it is, it helped me to just think about someone else for a change. It was a really sad thing that happened, but it was an elderly gentleman and I guess it was his time. I wish my aunt lived closer, but she's always available if I need her.

So that's it for me, transplant and panic. Hopefully it will get easier over time and I'll feel comfortable with whatever decision I make. Oh, my bleeding has finally seemed to stop. I bled about 2 or 3 times a day until Thursday. Nothing Friday or today so keep your fingers crossed. I'm feeling pretty congested though and I don't know if it's infection or just left over crud from bleeding but I started IV's even though I swore I wasn't going to do them this year!

Stay tuned to hear about other events that are annoying in the next blog!

It's time to blog

2007-02-07T16:32:00.000-08:00

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.

I'm listed....yipee?

2007-01-27T23:27:00.000-08:00

Well, I got the call Wednesday that I am in fact a candidate for bilateral lung transplant and that they have accepted me into their program.

I was getting my nails done Wednesday afternoon, and my cell phone rang. Well, as the only person that calls me on my cell is Kelly, and I knew I could call him back, I ignored it. My nails were goopy at that point. So when I went out to my car and listened to my message, the transplant coordinator said, in a grave voice, that he needed to talk to me about what they discussed at the meeting today. He hemmed and stammered a bit and said, please call me and told me what times he'd be in the office. The tone of his voice and that we needed to talk...I thought crap, they aren't going to list me. What do I do then? Everything is getting so hard, breathing is a chore, what if I can never have a transplant? What if they found something with my health that says I can't have one? Panic.

So I went home and called him. He told me I'm listed! I immediately thought, what if they call me right away? I'm not that sick. I don't really need a transplant.

Can you say schizophrenic? Neurotic? Plum loco?

He said he hadn't calculated my score yet, but that when he did he could let me know if it looked immediate or long term for waiting. I am getting to know a man that is listed at USC also, and he has had the social worker calling him to tell him that he has almost been called twice, but the lungs were no good. So he is someone that is ready, and wanting a transplant now. I'm assuming they won't say I'm that ready (health wise) yet. This man has been listed since June and he wants a transplant asap...so I'm sure I have at least 6 months to wait till I start to panic in earnest!

I'm as confused as ever, but closer to knowing that it will happen one day. It's the walking down the hallway and being out of breath that has me feeling that way. I did one of the 5 planters in the front yard Thursday. Sitting on the bricks pulling weeds is ok, even though my legs are killing me now. But each time I had to get up to empty my box of weeds, I had to rest before I could start again. Bending over to reach the back of the planter makes it very hard to breathe. When I was done I swept up my mess and I thought that would kill me, but I refuse to not be able to do something. It's just so hard. Then I hosed off the driveway and I had cleaned off the porch the other day...had to get rid of the frozen crunchy plant...and that's it for me! But the front of the house looks nice. Just don't look anywhere else! I need to prune 6 more roses, then the 5 climbing roses, then the rest of the palms and the weeds. I should be done by spring!! The back yard? Well...let's just not go there! Anyway, the point of this rambling story is that I shouldn't have been so out of breath, literally just from standing up. It shouldn't have taken me 3 hours to do one planter, and I didn't even get to the climbing roses. So I am aware of my lungs getting worse. I'm trying my best to stay in some sort of shape, but it's not easy. I feel like I spend all my time cleaning or doing chores, because it takes me so long. I'm the one who wants my house clean or my yard done, so I'm the only one putting pressure on me. Kelly would never get mad at me if I couldn't do stuff. But I like it a certain way. But then I get so sick of working every day, errrrrr.

Next week is going to be a busy one. I have a drug study appt. on Tuesday and I hope to get home in time to go material shopping with my sister. I have the dentist on Wednesday...do you think that will ever be over? Thursday I have a procedure..surgery..what ever you want to call it. I'm having a CT angiogram to see if any of my arteries are enlarged enough to be worried about them. I'm not sure if they'll actually do the embolization at that time if there are problems or if they'll have to get insurance approval and then have me come back. I hope it will be in one fell swoop. The drugs are fun, but the laying flat is sure not, nor is the pain that comes after.

My cousin Merle and I are going to see a movie on Monday, so that will be nice. Michelle will be coming down next weekend, I hope I feel ok. I got most of the house clean yesterday and today so I just have to do the guest room. Cross your fingers nothing is wrong, no embolizations and no pain.

Tonite Kelly and I went to dinner with a friend from his old job and his wife. They are the nicest people. I wish we saw each other more often. They don't live that far, it just seems like stuff always comes up! We ate and talked and talked...they are all smart people so I told them I would just talk in sign language and then I'd be the smart one! ha

So guess that's all. Later I'll tell you about the mean lady at the grocery store, my sign teacher at Chaffey and other fun stuff! Good night!

many topics

2007-01-19T21:53:00.000-08:00

So, what a long day. Fun, but long. Yesterday I met Lynn at the quilting convention and went to a lunch and demonstration with her. It was very fun. The teacher was hilarious. Lunch, not so much. But it was a short time and then I left. Today, she picked me up at 11 and we didn't get home till 5 ish. There was a 1 hour showing of quilts, but other than that and a short stop to eat I was on my feet, walking, walking, walking. With 100 pounds of 02 on my back. Well ok, it wasn't 100 pounds but it sure felt like it by the end of the day! There has to be an easier way. Yes there is the kind you pull, but the arthritis in my elbows prevents me from doing that for more than a very short (30 minutes) while. Anyway, I got some very cute material. "Carol, I didn't know you quilted", you say....well heck I don't! But the material was so cute I couldn't resist and my sister swears she is going to get me to make a quilt! We'll see! I was wiped out, but Lynn went back for a quilt class or group, whatever it's called, to do a quilt from 6 PM to 6 AM. Yep, she's gonna be there all night! I gave her a key so she could come sleep here if she can't make it home.

Anyway, after she dropped me off, Kelly and I went to eat and then to sign language class. His is from 6:30 to 7:30. He did great! Now he can understand me when I can't talk ( I lose my voice a lot) but do you know what he told the class, in sign language? The teacher asked how much sign language he knew. He was supposed to say a little, some, a lot.... He said and I quote "crazy woman, her". Meaning that's what he knew.. the words "she's a crazy woman". Hey, that's not nice!!! But the class enjoyed it. Then he went home and my class was from 7:30 to 9. Now I'm home and tired but thought I'd write. What a fun day it was!

Let's see, what other topic...hmmmmm. Oh, transplant eval. As far as I know, I've done all the tests, some twice. But still no answer. The transplant coordinator called while I was gone and told Kelly I have to do something more, not sure what it is, but that it wouldn't slow down the process. I'll find out Monday I guess. On the regular medical front...my primary doc did regular blood work which showed my three month blood sugar level is 6.3 (should be under 7), my cholesterol is 183, my other levels are all good, but I'm anemic. So wanted more testing to see if there was a problem like bleeding and no there's no other problem but I'm low in iron, B-12 and folic acid. Weird. So yup, more supplements. I'm hoping if we get the anemic part fixed I won't be so tired all the time.

Lastly, I'm afraid all my plants are dead. They are crunchy and not happy at all. My few potted plants are ok because I put them in the garage with blankets on (towels on them) but the outdoor stuff...not so good. It will be interesting come spring to see what grows and what doesn't. I'm not supposed to be playing in the dirt (aspergillis from the dirt can get in your lungs...yea yea yea...I've been playing in the dirt for years) but think this year I'll be in the dirt a lot replacing plants. Hmmm, my chance to relandscape, what do I want?

So I think that's all. I'm off to do med's and see how long my eyes will stay open. Oh, in case anyone wondered, Kelly is really loving his new job. People, good, drive, good, work load, good, fun, yep. Whewwww. I'm so happy for him. Ok, really that's all now. Bye

It's too darn cold!

2007-01-17T22:16:00.000-08:00

What the heck is going on? Is California having a REAL winter? Good thing I've got really warm coats. The other morning, Kelly woke me up to look outside and said "look, everything is white". Well my brain was still asleep and I was thinking "yea, so?" Then he had me look out the sliding glass door and I saw a two or three inch layer of white stuff on the brick planters. Oh, I get it. I thought it was snow but he said it was hail. And then I noticed all the white yards and roofs he was trying to show me before. I was afraid for him to drive to work if the roads were frozen. It started raining and the "white stuff" didn't go away!

Well, he waited a while to leave for work and I went back to bed. When I got up it was sunny, not a cloud to be seen, and no white stuff left. I'd have never known if he hadn't shown me! I do have a picture and will post it if I ever learn how!

I've received a picture from my friend who was in Albuquerque for Christmas, it snowed there about a foot. She grew up there and it never snowed there that much. I received a picture from my Aunt in Oregon. She lives on the coast...another picture, another snow, another snow man!
It doesn't usually snow that much there, if at all. I'm not sure.

What the heck? Freezing in Dallas and Austin? I've had to put little blankets on my plants so they don't die. The plant in front is all crispy and I don't think it'll make it back. I just pruned all my roses a few days before this weather. I hope they live. I don't want to replace 15 rose bushes!

Other than that, I went to my first night of sign language class at Chaffey. Only sign I is open, but I think it will be too easy for me. I recognized the teachers name so stopped to ask her if she was related to...She said yes but we got divorced 6 years ago. Oops, next subject!
Before class it was very cold (class starts at 8PM) and all the stupid teenagers had on windbreakers or those half sweater that they think are so cute. Some even had on flip flops. They were all shivering and blowing their noses....heee heee. I may have looked dorky in my mountain man coat, but I was warm as toast! The class before us didn't get out and didn't get out. Finally I went in and said we were waiting, so the other class was let out. You'd think someone would have thanked me, but NOOOOO. They were all afraid to even look at me with my 02 on. It was sounding really loud out there in the quiet cold air. No one even sat by me when we got in. But if I stay in this class, they'll want to sit by me soon enough when they find out that I already know most all from this class! I'm going to try to get into Sign II at the Norco campus of Riverside Comm. College. Then maybe I can go on to III. Novel idea...how many schools can you take I and II at?

So that's it for me. I'm having lunch at the quilt show tomorrow and Friday with my sister. She makes the coolest quilts. Me, I do real good at snuggling in them! All summer I complain the quilt she made for our bed is too hot, too heavy. Well not now!! And the cats like it too.
So, off to make Kelly's lunch, do meds and treatments and try to get up early tomorrow. Yick. I hate early!!!
Good night

A thought provoking day

2007-01-09T01:38:00.000-08:00

This may be a bit rambly, long winded, confusing...but that's how I think! So hang in there readers!

Yesterday, Sunday, was a very odd day. A very sad day. My uncle has been very sick for a long time. He was in a nursing home. He started out in his own apartment, where they do your sheets and towels, cook for you and serve in a main dining room...that kind of thing. But not too long after being there, he began to have problems. Actually now that I think about it, the real problems seem to have started after a dental treatment in which the dentist gave him the wrong antibiotics. Anyway, he deteriorated to the point of being in and out of awareness, not eating, not talking, on oxygen, not getting out of bed at all, losing weight...
His one daughter, my cousin, lives here, near him. She takes care of him, sees him almost daily and puts up with all his stuff. The other daughter lives in Oregon and sees him when she is here.
Well, my uncle was doing very poorly and they didn't know how long he had. It could be days, or weeks, but nothing in a way that was good. He had no life.

So the cousin came down from Oregon. She and her sister were with their dad, just waiting, talking to him off and on. My other cousin and I went to see them on Sunday afternoon so that we could see the cousin from Oregon. I was in shock at how differently my uncle looked. It's been a while, 6 months or longer, since I'd seen him. If I had been looking for him I would have passed right by his room knowing that man wasn't him. It couldn't be.
Well, we visited for a while, then decided to go have a quick lunch. The four of us were only gone 30, 40 minutes and my cousin gets a call from her son, telling her the home just called and her dad had passed away.

We knew it could come at any time, but it was still a shock. I went thru a myriad of feelings...from we should have never gone to lunch, (guilt) to maybe that's why we were put in this situation to keep the cousins from having to watch their father die (mabye useful) to I didn't even say good bye (guilt again) to even feeling thankful that he no longer looked like my dad so that it wasn't so hard for me (feeling very selfish). I didn't know what to do, there was no point to rush, but wanting to get them back. Wanting to help in some way, but there was no way to help. Wanting to comfort, knowing that the hard stuff is still coming.

As I was driving home I got to thinking about all the family I have lost. My dad came from a family with 7 girls and 3 boys. My dad was the youngest. Each of them were married. I knew and loved all those people. With my uncle gone, there is now only one aunt left. I was thinking about all the grave stones with all the different names, about how I used to visit those people and now they are gone. Wondering how strange it must feel to be the one sister left. Her whole family, just gone. Then I got to thinking about my grandparents that died, my parents, my brother and sister even though I never met them. And the countless amounts of friends with CF. So many people gone.

Today I just read an email from yet another cousin of mine :) and her mother in law passed today. I never knew her but it just seemed to make me sink a little lower.

I'm not depressed, but just a lingering saddness. Again with the feelings of needing to say kind things to people, of wanting people to understand that life is too darn short and you need to take care of things. Today I went to lunch with a friend on the spur of the moment. I didn't want to go because I had so much to do today. But I went and had a nice time. The house, the yard, all that will be here tomorrow. I don't intend to not ever do anything agian using life is too short as an excuse to excape my responsibilities, but I need to put it in perspective and get my priorities straight. I try to do a good job of that, but I want to do better.

I also want to learn to not feel so guilty. It wasn't my fault we went to lunch at that time, it wasn't my fault my uncle died while we were gone. And as for the past, it wasn't my fault that my dad died. I couldn't have stopped it. I still FEEL like maybe I could, but my brain is saying I couldn't and let it go. So I'm going to try. I will try to stop feeling guilty all the time for so many things, like not being the kind of wife I want to be because I'm so tired all the time. I can't help it. I need to stop beating myself up for being afraid.

I could go on and on. My brain is still running in circles from yesterday.
I hope my uncle is in a better place and that he is at peace now. He was not happy for so long.
Maybe he and my dad are raising some kind of hell, riding motorcycles and visiting with all the other family that is up there.

It is just odd, to be so close to death, but knowing that it really doesn't effect me ( I didn't know my uncle that well, he lived in Arkansas all his life). It is odd how life just goes on. It's like it should stop for just a minute to acknowledge what has happened. It is so odd to wonder what's after, if anything. It's sad to really think about all the people you've lost and even how you lost them. It's sad to think of when it will happen to you, will anyone remember you, think about you, or do you just cease to exist in the minds of those who come after you. I have no children, so I expect I will quickly fade away. So sad.

Happy New Year

2007-01-01T00:31:00.000-08:00

I hope everyone had a wonderful New Year celebration, whether that meant staying home, going out or going to sleep! I hope for everyone a New Year filled with love, peace, hope, health, family (that includes pets!) and friends.

Two people in my world (CF) died this season. One wonderful man on Christmas Eve, one young woman on the 27th. Both were wonderful people and will be so very missed. Know that life is short, too short to hold on to grudges, annoyances or petty differences. Let your loved ones know how you feel. Don't assume they know or that they don't need to hear it. It can make all the difference if you can just say how you feel.

Happy New Year
All my love to my family and friends that mean so much to me
Carol

A perfect Christmas

2006-12-26T23:56:00.000-08:00

This Christmas weekend was the best! I haven't had such great time around the holidays in years. I was surrounded by family and friends, great food and good times.

I got to start my weekend by having dinner with my cousin Kris from Oregon, her sweet husband David, their kids Trevor and Griffen and Kris's dad, who calls me his other daughter, Gale and his lovely wife Cheryl. Kris and the family were able to come to Calif for Christmas to take the kids to Knott's Berry Farm, Disneyland for a few days and Universal studios. So we met for dinner at the chicken place at Knott's. It was so great to see Kris. I always think of her as about 18 and when I see her she still looks 18, but is a great and loving mom. I had so much fun talking to her and getting to know Griffen. He is the cutest boy ever. I wanted to scoop him up and take him home! Trevor was at the far end of the table so I didn't get to talk to much to him, except in line. He has become shy, except when it is time to talk about Sneaky Pete. I think that's the name. It's a guy in jail at Knott's and Trevor wanted to break him out of jail but just couldn't do it. But he did win numerous stuffed animals which mom and grandpa and grandma loved carrying around!! I sure wish they all lived closer. I miss that part of my family.

But, on to the next day which was Christmas Eve. I got to start the day by having lunch with Michelle and Allen. They came down to spend some time with Pat and Cheryl for Christmas. We just went to lunch at Applebee's and exchanged gifts. It was very fun. Michelle's friends Chacho and Elaine were there too. Again with the eating! But I was glad to see her for Christmas this year. Since she's moved we haven't been able to be together at the holidays.

The annual Forester Christmas Eve party was at Lynn's. The hose looked beautiful and the food was great. Everyone came and I know Lynn was so happy. There was enough dessert to put someone diabetic in a coma! (Not me, I kept taking shots!)
She was surprised when people started showing up, as somehow she thought the party was at 7, and it was at 6. Good thing she was ready! I had so much fun talking to everyone and eating till I about popped. Patty, if you're reading this, Noel is waiting to become Leon!
I took my friend Becky with me to the party, since she had nothing to do. She was not amazed at the amount of people since she is one of a set of 9 siblings. I can just imagine how many are at their Christmas.

On Christmas day Kelly and I opened gifts here before going back to Lynn's and Denny's. Kelly got me the most beautiful earrings...diamond (Hearts on Fire) studs from our favorite store. They are so perfect, and white..they make my other diamond earrings and necklace look grey. I told Kelly he started it and now we have to start upgrading! I think he choked! He also got me a couple other things and I got him gift certificates since I'm computer illiterate and would have no idea what to get him. I did pick up Kelly Pickler's CD because he thinks she should have won American Idol. Who knew she sang country? He hasn't listened to it yet!

At Lynn's we had ham and I actually fixed all the sides. I even made yams, that's a first for me! I don't eat them so I've never tried to make them. All my clean boxes that my med's come in when they are delivered to my house were perfect to pack all the food containers. One for cold and one for hot. Guess it's a good thing I was on IV's last week! We did gifts there and I scored. I won't brag but I got the best gifts ever!!

Today we went to Frye's because Kelly can't let a certificate sit in his pocket for too long. The parking lot was a zoo. I don't think anyone went to work, they were all at Frye's!!!

The only sad note was that Kelly got me the most beautiful Christmas card. I just started crying my little eyes out. I so much hope we have 40 more years together because Kelly is the love of my life, my strength and my best friend. He said no more nice cards, from now on it's cartoon characters for me!

Now it's time to see if I can get to sleep early for a change. I think pruning roses should round out this perfect weekend. Hard work, it's good to do after all I ate! I wish Christmas was every other month. What fun would that be?

I hope everyone had a wonderful Christmas or whatever holiday you celebrate. I hope friends and family were near, hope was abundant, and peace was with you for this weekend.

More transplant stuff

2006-12-18T00:41:00.000-08:00

So I said I would get the results on Wednesday of last week as to whether or not they accepted me as a person for transplant and listed me. Well, I still haven't heard about that. I was told to go forward, meaning have more tests. So this past Friday, I had to go back to USC and have an EKG and Echo and a right heart cathater.

The same as last time, there were many problems, from where I was supposed to go, to what time, to when the procedures were and in what order, to even what procedures I was having.
It was all very frustrating and I almost walked out. I was there at 7, ended up having the procedure at 11:30, and then the echo and EKG after that. It was a mere 15 1/2 hours with no food and water. Not good for a diabetic or for someone with CF. We had to force them to put me on glucose so I didn't crash.

They also put me in a room with other people. Bad for germs and me. But they insisted the people were only there for out patient surgery and weren't sick. The second guy they put in my room was throwing up mucus....now tell me he isn't sick. I'm still waiting to see if I get something!

This whole process has been so bad with the right hand not knowing what the left hand is doing that it terrifies me to have actual surgery there. If we are accepted on the list and then meet with the surgeon, I guess we'll talk to him and see what he says. I do have the right to go elsewhere, even to be listed at two places, but the insurance won't pay for another round of evaluations and that is a huge cost. I don't know if I'll stay at USC or not. They are supposed to be a top notch hospital, but from what we've seen it is awful. Clear down to they've got rid of the cleaning staff. You should see how dirty it was.

Outside of this, I've been not feeling well at all. I've been on IV's for about 10 days now and not feeling any better. Today I had a small bleed. The med's I'm on make you have fatigue, muscle pain, diarrhea, cramps, headache and no appetite. I've lost 3 or 4 pounds so far. I'm trying to keep up but not making it. Liz helped me with the housework and that helped a lot. But between doctors and dentist appts., guests at the house a few times, wanting to decorate, getting up early for USC, having hair and nail appointments (can't not go to those!), going to an xmas program.....it seems endless. I started my Christmas shopping tonite. I got one person done, yipee. Only 5 more and grab bag to go!

Man, I hate feeling this way. Today I was very sad and tearful. I feel like crud, but the possible fix seems worse. I bled and worry that it will continue. It seems to never just come once. I just hope I'm off IV's before Christmas so I can get the med's out of my system and feel better, or at least have more energy before the holiday. I'm looking forward to Christmas, I love it!

So that's it for now. Think I'll try to get some sleep. If I don't get back to the blog before, have a Happy Christmas everyone!!!

Transplant evaluation

2006-12-01T16:21:00.000-08:00

Yesterday was a really long day. I tried to go to sleep early to be ready, but since I usually go to bed around 3, I couldn't just fall asleep at 9, or 10, or 11. I finally went to bed at 1, but took what seemed like a long time to fall asleep. I got up at 4. My little eyeballs didn't like it, not one bit!

So first thing in the morning was flippen cold!!! 34* according to PFF on Euclid and Foothill. I was shivering! When we got to USC at 6:45, the appointed time, it was still freezing. The parking lot was in the shade, duh a parking building, and so was the walk to the hospital. I couldn't breathe it was so cold. I was longing to get inside, just to find out when we did that they had the huge entrance doors not working well, and it was 40 something inside the building also.

We finally got thru admitting and went upstairs for the first test and we were so happy that it was warm! First thing they did was a blood gas test. For any of you that haven't had this, it can be extremely painful if you get someone not good at it. They need to take blood from the artery in your wrist, not from a surface vein like usual. But my guy did a great job and I only felt the first stick. Then I did a full set of pulmonary functions tests. Took two hours. I was beat. After that a 6 minute walk study. The point is to see how far you can get in 6 minutes. Without my 02 I might add. Well I took off like a bunny, but slowed down after I was sucking air. I was surprised that a place as advanced as USC had me walk up and down a hall way instead of using a treadmill. I ran over a few people, oops. But I went 1580 feet. A mile is 5280 feet. So I went about 3.4 miles per hour. I actually think I went way faster for a while, and then way, way slower! The guy kept saying don't push yourself so hard. Well isn't the point to see what I can and can't do? By the time 6 minutes were up my legs were burning so bad I wanted to sit and never get up! I was surprised the difference between walking 30 minutes or more at a much slower pace and walking 6 minutes really fast. Well, fast for me. I guess my walking around the mall isn't the work out I thought it was!

Next, blood work, then xrays and CT scan. After that met with the transplant coordinator, then the doctor. The doctor is the pulmonologist, not the surgeon. I've met the pulmo guy before and really like him. We bantered back and forth and argued about my weight again. He wants me to get to at least 110. I said, mmmhmm. That was my total response, with a smile of course! He asked what had changed from when he saw me two years ago when I was checking out USC for their CF clinic. Told him about how hard everything is getting, about being short of breath all the time with any effort extended. Told him about the bleeds and about the "event" in July.

After that was...oh, financial coordinator. I hate insurance. They gave her the wrong information. I wish what they told her was true, but I've been paying long enough that I know it's not. Too long of a story. They were very impressed that I know each of the three parts of the insurance, how they work and have a name of who I talk to at each. Also fax numbers that they needed to send info over. Well after all, isn't that my second job?

Lastly was the social worker. I don't know if I impressed him or if I made him think I'm so not right for this procedure! But he remembered us after we talked about the last support group we went to and Kelly raised a little stink because there were no masks for patients to wear. He said he was really mad, not at Kelly, but at the people who put him in the position to not know about this. They now have masks at the support group meetings. He kept looking at his watch though and I didn't know if he was bored, running late or what. We were there only for our scheduled hour so I'm not sure what was wrong.

So that was it. When I was listed in 2000, it took about 4 months to get the results. This time it should take a much shorter time. They, a team of about 20 people...actually not sure how many, but everyone I met, plus the surgeon and some others...meet next Wednesday to talk about me. I wish I could be a fly on the wall. They will reach a decision and then and let me know if I'm accepted or not. If I am, they will not tell me my score (the people on the list are scored from 0-100. The higher the score the closer to the top you are. Meaning the higher the score, the more in need you are of a transplant. But often people in the 30's and 40's get their tx) but they will tell me " your score is too low to be called soon" or "with your score you can expect a very short wait"...or something like that.

So now it's a waiting game. Oh, if anyone is interested in being part of my support group, they want names. It would be people who come to visit me in the hospital, people who can bring food or help when I get home, people who can drive me to doctors appts once I'm out as I have to go twice a week for quite a while. And as a long shot, they are also asking for names of anyone who wants to be a potential lobe donor. This is for the back up plan. You need to be type O and in fairly good shape. The 50 year old rule no longer applies, so you can be over 50. Also you need to be 5 or 6 inches taller than me, I'm 5'3". You can contact me personally for more information.
I told them I have lots of cousins and friends who will help me, because you can actually be denied a transplant if you don't have a support group. I know of one girl this has happened too. How very sad that someone is so alone.

It is a darn good thing Kelly was with me. I had him running back and forth all day, carrying my stuff...the air in that place was so dry, I thought my blood sugar must be skyhigh I was so thirsty and my mouth was so dry, so I had him go to the car and get my testing kit. Blood sugar was normal, so I had him go get me a soda. It didn't last too long. Then I needed another, then we went to the car to get lunch (I had packed us good food, remember the diet!) and took it to the cafeteria to eat. Kelly brought it back to the car because my walking legs were done. He waited, he comforted, he talked to me and for me, and kept me fed and watered! What a guy. It must have been so boring but not a complaint came from him. Maybe it took his mind off the stress of the first day of his new job, MONDAY!

So, I guess that's all. I've been so tired since then. Thursday night I slept for 12 hours. Friday night for 13. I didn't get up until 3 pm today. I couldn't believe how late it was. The kitties loved it. They were both curled up and asleep beside me. One leaning on my legs and one on my head. They're so cute!!! I am going shoe shopping tomorrow with my sister so I have to get up at a reasonable hour, wish me luck!

Getting ready for Thursday

2006-11-27T22:37:00.000-08:00

Nope, not Thanksgiving, that was last Thursday. I am going for my transplant eval this Thursday. I'm so stressed. I don't actually think about it and stress out, but I've had insomnia for a week now even with melatonin, valerian root and 3 benedryl. About 4:30 or 5 am, there I am staring at the ceiling and wondering if I should just get up and read or continue to lay there.

So everyone cross your fingers for me, that all my tests say I qualify, but that for now I'm too healthy! Those of you out there reading this, and you know who you are, who has had a lobe removed and are smoking again, stop it! You don't want to do this too. Others of you out there who have no idea what I'm talking about...well, yell at him for smoking! ( and say a little star light start bright...for me!)

Kelly and I were walking this weekend, and this other couple were standing still so we passed them. The guy looks at us then taps his girlfriend and tilts his head our way. She looks and he says that's the most romantic thing I've ever seen. I guess he was talking about Kelly carrying my 02 while we walk. It is kinda romantic. We are literally "tubed" together! But it is also embarrassing! Oh well, at least he didn't say that's sick or something.

Turkey day we went to Lynn's and Denny's. We had boxed dinner from Marie Calendar's. So good and so much easier than cooking from scratch! Lynn had everything ready soon after we got there. I just ate and felt fat..for then and the next two days! I can hardly wait for xmas food.
For those who read this, yes xmas eve is at Lynn's. Invitations will go out soon. We're going to have spaggetti and garlic bread, how's that? And of course everyone needs to bring dessert!

So I guess that's all, just trying to keep up. I am so tired after not sleeping that I don't get much done but I'm trying!

I loved the rain, but want more of it. Let it rain, let it rain, let it rain. Bow to the left , bow to the right...thank you. Good thing you can't hear me!

Yipeee

2006-11-20T19:15:00.000-08:00

Well as of December 1st, Kelly will no longer be working in Anaheim. He was offered the job in Azusa, with a raise I might add, and will start on Dec. 4th. I am so so happy for him. His immediate boss is not working this week, so he told the next boss up and the man had virtually nothing to say. He didn't ask why Kelly is leaving, if they can do anything to keep him...nothing. He told about his time at Azusa in the 70's..,,yea so?
I'm just so excited. Drive time cut by over half, a boss that really wants Kelly to be there and close to home in case I need him. Yipee!
I think it will be a perfect fit and from there he can start moving up the ladder. Yes I'm talking in years, but hey, it takes time.

As for me, I'm still trying to get us healthy. Last week I walked 3 out of 7 days. Not too good, but better than usual. I walked 2/3's of a mile on Monday and Tuesday and one mile on Thursday.
Today I walked one mile also. The problem with the walking is I get so tired when I get home I just want to sit. Kelly cooked dinner tonite. We had whole wheat pasta with organic pasta sauce, no sugar, no fats. We also had sautaed (?)mushrooms in Pam cooking spray. I have to say, it wasn't as flavorful as Paul Newman's or mushrooms in butter, but we'll get used to it and maybe doctor it up a bit. I don't know much to cook for dinner that is good for you so I'm just doing a little at a time. Breakfast is easy and I"m not up long enough for lunch and dinner. I make Kelly's lunch and other than his peanut butter, it's a really good lunch. He's also cut his coffee down from about 10 cups a day to 2 or 3. His heart should be happy.

Other than that not much. Having Thanksgiving at Lynn's. We're going the Marie Calander box dinner. We went to the actual restraunt last year and it was really good, so this year we'll have left overs. Guess that day will blow our healthy eating plan right out of the water!
I'll have to walk more!

So now, I have to go iorn. Such a fun life!

What is Blogging good for?

2006-11-13T18:00:00.000-08:00

Hmmmm, let's see. Blogging is good for venting, so you don't have to yell and scream, or cry, or rant and rave. Guess that's the same as yelling and screaming. Blogging is good for keeping up with everyone without having to write 45 separate emails, or run up your phone bill.
Blogging is an easy way for people to check on you without them having to email or run up a phone bill. And blogging is a good way to kill time! Which is what I'm doing right now.

So in my last message I ask what is omentum? Well, for all those who wanted to know, it is a tissue type stuff, under the fat on the surface of your belly, under the muscle of your belly, that holds on to fat. It is that look of men who are 7 months pregnant. Hard, round, fat. yick!
I learned about this from Dr. Oz, on Oprah of all shows. I don't usually watch it but I like Dr. Oz so I tuned in. I even recorded it and watched it again with Kelly. I saw the continued story on Discovery Health. And I got the book.

Kelly and I are trying to eat healthy. Lucky for us neither of us has to lose 10 inches around our waist, as the people in the show do, so it's more about eating healthy. The book talks about how it's your waist size that is more important than the scale. For women your waist should be under 32 1/2. For men, under 36. I'll check my facts to make sure that is right. But it's about learning to eat in such a way that you don't have to obsess about eating. About learning to turn on the chemicals that tell you you're full. Did you know Fructose actually shuts that off, so even if you eat a ton of junk with fructose, you'll still think you're hungry? I'm the queen of fructose!

For me, I have to improvise a bit though, because I can't lose any weight. So I am eating a bit more stuff with fat than would be recommended, and yes, even some stuff with sugar. Lucky for me I don't gain a ton of weight, cuz I love sugar. But now I know how to turn it off and not eat the entire bag of marshmallows.

We also have to incorporate exercise. That will be easier for me than Kelly. He hates it. I started today by starting to walk again. I walked 2/3 of a mile, it took me 20 minutes. I'd like to cut that down, but it's the muscles I'm looking for. I'll try to do my girly girl push ups later. I also did a lot of house work today like laundry, and vacuuming the furniture in the front room, cleaning the front room and the kitchen. . So my arms are already tired. I think that's good.

Other than that, not much. May have to start IV's. Feeling a lot out of breath just walking around the house. It makes doing everything harder. But I'm going to persist! I have to call the doc's tomorrow. Looking forward to a funny movie tomorrow, Stranger than Fiction and cousin lunch on Wednesday. Wednesday is also our 9th wedding anniversary...yahoo! Amazing how time flies. I'm so happy to have Kelly in my life, even if he doesn't do house work, hee eheee.
He's kind and funny and he makes me laugh. He takes care of me when needed and listens and goes to get me bananas on the weekends or cotton candy at the computer fair. I couldn't ask for a better guy for me. Love you Kelly! (don't tell my number one fan, he'll be sad)

Is it Christmas?

2006-11-04T21:03:00.000-08:00

I think it is Christmas! I got the best package from my friend Joycie, of, well, a lot of years!
She sent books galore, several of the cutest socks with cats on them, a pen and note paper set and a yoga DVD that she assures me isn't superwoman style, and country music CD's.
Country Music? She must have meant to send that part of the package to someone else! :) But I'll try it out. I just kept taking stuff out of the box, more and more...what did I do to deserve such a great gift?
Thank you so much miss Joycie!!!!

Tonite Kelly and I went to the Cheesecake Factory. Oh my gosh I'm so full. I wanted to go to a kareoke (can't spell it) party tonite but I totally forgot. Kelly reminded me at dinner, of course too late. I asked him why he didn't remind me before this...his evil grin told me why, he didn't want to go. Brat!! I was all ready to sing Black Horse and a Cherry Tree. If I sang too badly I could do it in sign language! I don't know all the words in sign, but no one else would know any of the words so I could fake it! Now I'm too full to do anything.

I had pineapple upside down cheesecake for dessert. Ymmmmm. My blood sugar was in the 300's and hour and a half after eating...oops, bigger shot please. But it was so good. AND, Kelly got me cotton candy at the computer fair today. What a yummy day. I think I'll have to do that yoga about 6 times tomorrow.

So that's about it. They did finally finish the requisition for the job Kelly is trying to get in Azusa. It has to post for 5 days, and he has to apply, then ....who knows what then, but eventually he should have the job! Keep your fingers crossed.

Guess that's all. I sure wish I was bulimic. I'd feel better right now. But tomorrow is another day to work on our omentom. What is that you say? Stay tuned for the next installment to learn what your omentom is.

Menopause

2006-10-30T19:56:00.000-08:00

The play....not the real thing!! My sister and two friends and I went to see Menopause at the little Grove theater in Upland. It was great!! I haven't seen my sister laugh so much in I don't know how long. I could sure tell who has gone thru or is going thru the things they were talking about because they almost blew a gasket at some of the songs. Two rows in front of us there was a man and wife (I'm assuming) and it was almost as funny watching him laugh and watching his wife look at him with that sideways eyebrow up look. All you women know that look!
But the actresses were great, the words to the songs they sang were hilarious, all in all a very fun time.

My friends and I ate at Antonio's first. Yummy food. It's that one on the corner of Vineyard and Foothill. Same parking lot as Bobby Baja's. I will be going back there again. I would say better than Macaroni Grill food wise and definitely better ambiance. Quiet, you can actually hear.

Anyway, that's all I did this weekend. Not much going on this week, the normal appts. and such.
So I guess that's all!
Yes Cambria, I love the comments! And if I have my way we will be at the party Saturday!

Kelly and the doc

2006-10-24T23:04:00.000-07:00

Things turned out well today for Kelly so far. They said by seeing the place in his chest that hurts, it's skeletal? I put a question mark because what does that mean? But at least it isn't his heart. They did an EKG while he was there and did find a slight anomaly. The doctor said normally with it being so small they would do nothing, but with his fathers history of heart disease they are going to do a chest x-ray, a stress echocardiogram and an upper GI test for his heart burn. It has been really bad for years. He takes protonix or nexium whichever our insurance decides to pay for at the time but still has some problems with it. When he told the doctor how much coffee he drank, she about flipped and told him to stop it! At least the upper GI is one where you drink crud then they do an xray or a CT or something. They wanted to do a down the throat tube thing a long time ago, but Kelly was having none of that!
So it looks like things are all ok but he has to start getting in shape. Number one fan, are you out there? Could you come and kick Kelly's tush for me?

As for me, I went to see Marie Antoinette today. I really liked the movie, but the ending. It was very anti climactic. I won't tell you what it is in case you go see it. My cousins Merle and Donna went also. We were all saying we'd never have made it in those times with baths once a month or so, and all the clothes they wore and the hair do's. Oh my gosh. I can't get ready in time now, I'd have never made it then. Of course she had 25 people helping her every day. How annoying!

But looking at Versi sure made me think about my trip to France to see my wonderful friend Joycie. It was so beautiful there and Joyce made it so fun since she already knew where everything was. I wish someone lived in Italy, I want to go there too. Anyone up for moving to Italy or France again, or hmmmm, anywhere exotic? If you do let me know and I'll come visit!

Tomorrow is the cousin lunch, so I've got to try to go to sleep early so I can get my tush out of bed on time. Wish me luck!

Me and my big mouth

2006-10-23T21:26:00.000-07:00

So, boring eh? Got the bill for the ambulance, they are not going to write it off (though I'll call BCBS again because they said they'd try to get them to write it off) to the tune of almost $500.
It seems they are not a PPO provider. Next time I'm about to die, I'll remember to go online first and find an in network provider. yea right. Blue Cross actually said that there are no PPO providers for ambulance in the state of Calif. So the ambulance wants to make lots of money, not just the pidley $750 my insurance already paid. Crazy.

Then for the first time I went on line to register my for my Shell card so I could pay on line. I have most of my other stuff on line but never did this credit card. Anyway, I get all registered, go on the part to make a payment and low and behold, it is almost $300 more than my statement that came in the mail said. So I looked at new activity and there are three charges in El Monte (you all know how often I go there) all on one day, each larger than the other. The final charge is an even $100.00 So of course I call customer service immediately. They said there was a red flag on my account already, and that she could see that it wasn't my normal pattern of purchases. She sent it to the fraud dept. but then tells me she can't pull it up so I need to fax what I have seen on line. Now wait a minute, she already said she could see it wasn't my normal purchase pattern, so how could she know that if she couldn't pull up those charges?
Then I had to force her to cancel my card...she actually had to go ask someone if she should. When I asked her what was going to happen, she said fraud should get back with me in 7 to 10 working days. I asked her if I would be responsible, and she said, "well usually when a card has been stolen or lost, the person doesn't have to pay. But since you still have your card, I don't know what will happen." As if I gave it to my friends and let them use it? And the fact that they have my number and she didn't want to cancel the card because it was still in my possession?
Yikes. I can already feel a fight coming on. I sure hope not. It would be nice to have things go easily for a change.

Kelly has to see the doc tomorrow. He has been having chest pains for a while now but neglected to tell me. They come and go, but it's making me nervous. When I called the doc today, they set the appt for Nov. then asked what it was for. When I told the receptionist, she was not going to let him wait. Good!!! So Kelly thinks it's stress. I hope so. But whatever it is, I hope they get to the bottom of it quickly and it gets taken care of.

Still no call from USC. I think they don't want me. I guess I'll wait a few more days then call them and see what's up. Hmmmmm. Other than other insurance issues I'm still working on from forever ago, I guess that's all. Only can handle so much at once! Ok, it's enough!

Joycie and Kim, I'll try to stick to boring, I like it better too!

Sunday

2006-10-22T22:55:00.000-07:00

Not much to say. It's been a slow weekend. We've done nothing. I did get some yard work done today, almost got the whole patio area cleaned, and trimmed the plants that grow along the patio. Got to hire someone to trim those trees, they are way too big.

Still waiting for USC to call, when I spoke to the lady on Tuesday, she said she'd call back later that day or the next day. That's how it's been every time I try to talk to them. Makes me very uneasy. But hopefully if you are actually a patient they will respond to you in a more timely manner.

My big yahoo this weekend was I got an attachment for my vacuum cleaner so that I can vacuum under the bed or the couch or wherever. I know I'm weird, but I've wanted that for so long. I can move the couch if I feel ok, but the bed is impossible. So now I can get rid of those dust bunnies hiding in the carpet. Yipee! There is something seriously wrong with me!

I also got a computer disc that has regular games on it, like chess, backgammon....even mahjongg (sp?). Maybe I can learn to play that, it looks way confusing. But now I'll have something else to do when I'm bored at night instead of writing these boring entries :)

k, off to do breathing treatments, pills, inhalers, shots, the vest and maybe eat. Hmmmm,
what to eat... night night.

sad, confused and a mess

2006-10-17T23:01:00.000-07:00

Ok, so I talked to USC and will be starting the evaluation process for transplant. (they have to verify my insurance will cover the tx and the prescriptions afterwards, before I can go in) Just typing that sentence is making me tear up again. I don't want to be sick. I don't want to have a transplant. I want to run up the street, and go skiing, and dance till I drip with sweat. Is that really so much?

If they say I qualify for a transplant, that they think it's time, what do I do? I know I still have a choice, but I don't feel like I do. I feel like I'm being led down a path that I don't want to take.
I just want to be ok now.

At my last visit with the CF doc's I got the one that feels like it's very close to time that I have a transplant if I'm going to. He tells me I'm very sick. (my words, not his) He tells me with all that he knows about me I will definitely qualify. But he tells me that I have to think about if I really want to live at all costs, because it is at all costs. It is very hard, painful, life altering, a new life long condition and possible death or a life that is worse than what I have now. He barely mentioned the upside as he doesn't seem to see it happen too often, or not for long. This is a doctor that I so respect and like, he's been a CF doc for about 30 years. He just lost a patient that was 29, and he said they started seeing her when she was 6 months old. He and the nurse were so sad. But I digress...

And then again we're back to what keeps going thru my brain. I like my life now. Things are getting harder. I get tired easier. I do less. But I'm fine with that...sometimes not...but ok enough that if it just would stay this way I'd be ok. Will it just stay this way? Do I risk it all? Do I risk hurting those I love or is not risking it risking it? I know I go over and over this, but it all seems so impossible. I don't want to wait too long, like my friend Katie, or Catharine. But I know so many whose transplant didn't work out for one reason or another.

I told someone recently that I have to take my oxygen with me when I go to the gym and she just laughed. You do? I felt sad that she laughed, it truly isn't funny. It's hard and embarrassing. I haven't even gone in probably a year or more because of it. I need to get in shape in case I do or don't have a transplant...if I don't I need to do what I can to be stronger. If I do, it's easier to recover from the surgery if you're stronger going in. I'm so weak it's pathetic.

All this began because of my anger and sadness over another bleed on Saturday night. It was small, but I'm so sick of it. This, after the discussion with my doctor has made me want to just stay in bed till it's over. Let someone else decide. Where the heck is my fairy godmother?

Rain?

2006-10-14T19:20:00.000-07:00

What's the deal? Rain in October? It is supposed to be Santa Ana weather, not rain. But I love it. I love it for two reasons. One I just do. It is so pretty, cleans things up (although I don't know if we got enough for that) and sounds good on the patio roof. Two...I was going to work in the yard today and now I don't' have to!! I don't have to water either. Yahoo!

Kelly and I are having a lazy day. I told him he could be off the hook, since I kept him so busy with my stuff last weekend. But I can't stand to sit any more. So I vacuumed and am now doing some computer stuff. How can anyone sit all day? I don't get it!!

Riet, thanks for posting a comment on my blog. That's so cool you read it! If I had pic's of the wedding I'd send them to you. If she sends me any, I'll send you some. The girl who got married, her family is from Holland. I don't think she'd ever been there though. I have been once, I loved all the tulips at Kukenhof (sp?). It was beautiful.

All the rest of you out there, give me some comments...even if you just say, Carol, your writing is boring :)

Off to find something quiet to do so my hunny can continue on his day of TV! Bye

My weekend

2006-10-09T21:35:00.000-07:00

I'm happy to say I had a very very nice weekend. I started it by having dinner with my cousin Darrell, his wife Hannah and their son Andrew and of course Kelly. I haven't seen my cousin for about 15 years I guess and have never met his wife and son. Andrew and I got along great, he's a cool kid. Hannah is so pretty and sweet, I guess she got all that Southern stuff being raised in Oklahoma. The weather was perfect, not to hot, not too cold, and the conversation was fun. They came to the house after for a while and Kelly regaled them with stories of Myth TV. Don't ask. He was very impressed that Hannah knew what he was talking about. When he talks to me my eyes glaze over and he can tell I'm thinking about, oh, dinner or a movie... sorry honey.

Saturday was Helen and Doug's wedding in Long Beach. It was very nice, the priest was great. Helen looked so beautiful, I guess it's a bride thing. Doug was looking very handsome himself.
The reception was in Orange at their friend's house. It was decorated so pretty, it could have been a show on HGTV. It was in the backyard and again the weather was just perfect. We didn't stay till it was dark, but I bet it would have looked wonderful then with all the lights and candles.
Michele, the maid of honor, has been a friend of mine since 3rd grade. She looked very beautiful, not much change since high school. Kelly and I had a great time talking to Michele and Jill and the people sitting at our table. The food was great and you know how I love food! They put little jars or pots of M&M's at each place setting so the next night I gave one to Andrew and it can't be opened! Everyone at our table tried it and it is impossible. I think Helen planned it this way and is laughing knowing no one can get their little gift open!

Sunday Kelly and I went looking at new homes. We found a bunch in Rancho in the foothills I guess. They started at a mere $850,000. It's ridiculous. Yes they were pretty and spacious, but my gosh, who buys those homes? Then we drove around Claremont and found an older home for sale. It was up in Clairavoya (sp?). It was a mere $767,000. But it at least had a beautiful view. I wonder how much fixing up it needs? So needless to say, we'll be staying here for a while, a long while!!!

Then we had dinner with the entire family, or most of the family, at Vinces. Andrew and I had fun flicking straw wrappers at the others. But I think I got him in trouble when he didn't quite know when to stop. Oops! Got to talk more with Darrell and Hannah. Kelly and I wish they lived here. We could move to Dallas if I never wanted to go outdoors during the humid season and what is that 9 out of 12 months? No thanks! After dinner, I needed a ride home as Kelly had left early so they took me, but we went to Starbucks first and it was nice to talk. Got to spend a little time with Vicki there too. Now they are off to the Grand Canyon and then Albuquerque for the Balloon Festival and then home. What a lot of driving! But I'm so glad they came.

Today the fun continued. I had lunch at my favorite place, Red Lobster, with two of my friends Cheryl and Susan. We haven't had lunch in a long time so it was great to catch up. They went to a movie, but I was so tired from the weekend, I came home. Did some errands and some chores then went to sleep. I think soon, I'll go back to sleep!

So that's my fun weekend! Tomorrow is off to the doc...no more fun! Back on the study drug, which while a pain is a good thing. The weather is getting cool and I love that! I might even pull out the Halloween decorations I feel so motivated after this weekend. Who needs stinkin therapy when you can just have fun instead?
(we missed you June) (you too Kofie)

October 1

2006-10-01T19:28:00.000-07:00

Well it's the first of the month and I was going to start my new get fit program. I was supposed to at least go walking today. But I am so tired :( I didn't do much of anything. Figures!

I had a nice time yesterday. I got up early, 8am which for me is non existant, and went to get my hair done. I HAD to get it done and there were no more days as my hair person only works on Saturday. So I went straight from there to the bridal shower. It was really nice, lots of food, perfect weather for an out door garden shower and the bride seemed to be really pleased. There were the usual games and then my favorite, the opening of gifts. She got some great stuff. I hope the car was big enough! It was so funny and cute that they registered for the dog too so they got a new dog bed, dog bowl and two boxes of urine be gone. I got her one of those, had to, it cracked me up when I read that on the list!

Then home and not much else. Today I had all these plans, but my body said nope! The cats kept waking me up last night and this morning so I didn't get enough sleep. That just means my list for tomorrow is even bigger!

So, no one has a tree that they know the name of? I am taking some leaves to Mt. Fuji tomorrow to see if they can tell me what I have. I want my kid to have the coolest leaves.
Guess that's all. Talk to you all later.

Feeling ok

2006-09-28T20:32:00.000-07:00

It's almost one week after surgery and I guess I'm back to normal. No problems like some of the other times, just still a bit of my back hurts around the area they were gluing. On one of my other blogs I said that I wasn't going to do this any more, but that was just a test to see if anyone was paying attention. Now I'm really, really not going to do this any more. Really..

Had breakfast/lunch with a friend today, Miss Cheryl. It was good to get out and about. We went to Target after and she did normal real shopping, I did shower and wedding shopping. Think I can make it to one without getting sick? Shower is Saturday and the wedding is next Saturday. I can do it, I'm sure of it! So far I've missed every party, shower and wedding I've been invited to this summer. Enough already!!

My cousins are coming out to visit next weekend. Not to visit me per se but I get to see them. I'll see Vicki and Doug and their son Darrell and meet his wife Hanna and their son Andrew. Andrew gets to go to Disneyland, that should be fun for him! Anyone have a 9 year old that wants to go to Disneyland with them? It would be cool for Andrew to have some company.
I guess there'll be a family dinner on Sunday. It's been a long time and it will be great to see them!

Hmmmm, what else? Nails and toes tomorrow...it's about time. I think my nails are going to fall off. Then my hair on Saturday before the shower. They are having a garden shower at 2, then change to go out on the town at 6. I think I'll stick to the garden shower. By 6 I'll be sleeping in my soup after getting up at 8 to get my hair done in time. But it's truly necessary, you should see my roots! If you live within a ten mile radius you probably can see my roots!

Ok, I think I'm rambling. I'm waiting for those circus peanuts.. And who told you about rule number 14? I disagree!! But I did take a nap today, was exhausted after getting up early and hanging out for a while. What a wimp I am!

Ok, guess that's all! Love you people!

Home again

2006-09-24T18:26:00.000-07:00

I'm home. Came home yesterday. I couldn't write on the blog on Thursday because it was down, but Thrusday about 2 am I had a fairly large bleed. I did my good girl thing and called the doctor the next day, actually Thrusday morning and look what it got me. A trip to the hospital, surgery, pain, lots of throwing up (that's a new one) and more pain. But I'm home and all is well. The surgeon said he's so sad that he keeps seeing me, that most people have a few of these over their life time, never anyone having 5 embolizations in 8 months. But he found an artery that was, I forget how he put it, but he used the word aneurysm, so I guess it's good I went. I'm on IV's for a while now but I didn't do any after I got out of the club or today because I need to find out what is making me throw up. Like down to bile...ohhh, pretty pea green. YUCK!! I haven't thrown up since I was a small kid. Well, I did in July after being on the vent but I don't remember so it doesn't count. I don't know if it was the pain meds or the IV's. I've been on both before with no problem, but the pain med, which comes in a patch, looked a lot larger than what I remember having before. Maybe it was too strong. And the IV's, every time on I'm one they ask if I need something for being nauseas, and I say no. Well, maybe my body is tired of it and now it makes me sick? Who knows. But I've had a banana, a carnation instant breakfast and a little bit of potato and everything is staying put. So toned I'll try one IV, then start the next tomorrow. I'm hurting but I don't want to take any pain medic like I had before. Lynn just brought me a lidocain patch so that might help. It is for just the spot that hurts, not the blood stream. This time it's my back instead of my chest.

So that's it for me. I have been sleeping most of the time, I can't stay awake. I guess it's part of the healing process. Up for 30 minutes, asleep for hours. Hope that continues into tonite, so I can sleep all night. I missed a friends wedding today, I'm so bummed. I missed the shower because I was sick. ERRRR. I hope I get to see picutres.

Well, great. I just found out my best friend's brother is in the hospital, just up the street. They don't know if it's his heart, kidney stones, gall bladder....I'm hoping it's kidney stones, that's way easier than the heart. I'm not supposed to go to the hospital becasue of my ex but if my friend's daughter needs me, I'll go any way. I don't really care.

So I guess I'll go shower just in case, yes, it's 6:45 and I haven't showered yet. No smart elick remarks!!!:) Bye

not a fun night

2006-09-21T13:10:00.000-07:00

Well here we are again. We have been talking about Kelly's job possibilities...meaning places he might apply, what that would mean in terms of where we live, what if he was gone a lot....
I keep telling him it doesn't matter because I'm alright. No more getting sick, at least not badly.
So about 2 am, I go to bed. Get out of chair, walk to bed room, lay down (lie down?), start gurggling, run to the bathroom and bleed for quite a while. After a few minutes, seemed like a lot of minutes, Kelly came in, got my 02 and my water. I kept telling myself not to panic. It was not the same as the other, I could still breathe even though there was blood, I was not going to pass out, I was going to be fine. When Kelly came in I just shook my head yes. He put his hand on my back and I knew he was feeling to see how bad it was. As it slowed down, I just sat in the front room for a while, was afraid to lie down. Kelly slept on the couch. Then I went to the bedroom and sat up reading. Finally, I don't know when, I started to slowly inch my way down and got to go to sleep.

It is such bad timing, I didn't want Kelly to worry about me when looking for a job. I want him to do what is best for his career, not what is best when he's worried about me. This is so frustrating.

I had a dentist appt this morning. I didn't go, didn't call, I don't care. I have to go back, my teeth are a mess! But I was afraid of how they lie you down so far that you feel like you're on your head. All I needed was to bleed at the dentist office. Had other things to do today, but I'm just taking it easy. A little picking up, I need to run a few errands, but mostly sitting pretty still.

As Kelly put it, just another day in the life of a CF'er.

My little world

2006-09-19T21:35:00.000-07:00

Well, tomorrow was supposed to be cousin lunch. I've been working on the yard for two weeks, I've cleaned carpets and windows, (only 2) and I've cleaned house. But now there is no lunch!! Some people are sick, some have other appointments or engagements. We're going to try again next Wednesday. So, I have to watch for errant weeds for another week? I went out tonite and threatened the front yard that if weeds grew I'd just let everything die. I think the yard knew I was bluffing! Nothing like the motivation to get off my tush and keep the house clean! I think we should keep postponing for a few more weeks. I'd really get things done! I may just go ahead and make that desert tonite anyway, and eat it all myself. yummm

Kelly is doing better. He has resigned himself to the new position. He'll keep looking for new job opportunities, but until that happens he'll do the best he can with the new job. My sister brought over some books for Kelly to have on the matrix system and Kelly is learning as much as he can about it. He's a better man than I am. I'd be sulking still.

Saw Lynn last night. She and Kelly and I went out to eat and she helped me figure out how to put thread on a bobbin. It looks so easy after she did it. She just had her hair done yesterday. Man it looked so pretty. I wish I had her hair. I wouldn't know what to do with more than my six hairs. She should be on some shampoo commercial.

Other than that not much going on. I have a dentist appt on Thursday, my nails on Friday and my hair on Saturday. I'll be a new woman. Hope two days in a row of breathing chemicals doesn't cause an adverse reaction!

Oh, I also am participating in a Leaf Pals group. A woman I know is a teacher for a 3rd grade class. She does a leaf project each fall where the kids are hooked up with an adult pen pal who tells them about their state and sends leaves for the entire class. I don't know what they do with the leaves but I think it helps them share about their project. I have to find 32 leaves, preferably after they turn colors (yea right) and press them, huh? and then send them along with other goodies such as maps and info to the child. I'll also get letters from the child telling me about them. It should be fun. If any of you have great tree leaves and know the name of the tree let me know! I don't know the names of the trees on our street. And ours don't really turn colors, they more likely just die. I will have till the end of October to send them out. Before that will be letters and the other stuff I send. Maybe I'll go the the mountains and get pine needles too. The class is in Arizona, what kinds of stuff don't they have in Arizona that I could send?
I'll take all suggestions. I want my kid to have the coolest project!

So, I guess that's it. Bye

pissy mood

2006-09-14T23:08:00.000-07:00

It's been a really sucky day. Two doc appts, one painful. Seems like a day where everything you touch turns to crud. I seem to do that alot, must be me. I even managed to lose an entire blog entry. Correct spelling errors...hit...not delete...shoot.... and it had the best comment ever from my #1 fan. Maybe some day he'll give me a comment again.

Still no word from Nissan. So much for the "we'll fix it in 24 hours". Still no word from my perscription insurance. I sent in the perscription over 5 weeks ago. I keep calling. I keep having everyone tell me it's not acceptable that they don't know what the problem is. On Tuesday I spoke to a supervisor, who called back later that night and said the order was to be expidited...yea right. I'm supposed to start that medication tomorrow. As I said in my missing blog, of how I do 28 days study drug, then 28 days off. Well, tomorrow starts my 28 days off, in which I do another drug instead. Except, no drug. I'm so tired of this. We started this new great insurance on July 1st. Already they've changed 2 perscriptions supposedly with my doctors approval, my doc's say they've never heard from them, they had a delay of my Pulmozyme, and now they can't seem to send this. Of course both of the delays are the very expensive drugs. Pulmozyme is $1600 a month and this drug, colymycin is about $3500 a month. I suppose they think I'll give up. Wrong.

So that's it for me. I'm going to bed. Tomorrow has to be better or I'm crawling into bed after the doctor and giving up.
\

Nice and quiet

2006-09-05T22:45:00.000-07:00

There is absolutely nothing going on. It is too darn hot to do anything out side. I'm hoping the weather man is right and it is in the 80's this weekend. 88 will feel so wonderful! My roses are calling me, but I can't get to them!
Wow, I really can't think of anything at all to say. Fine, guess I'll write when something is going on!
Hope everyone is having as quiet a time as we are, it's a good thing sometimes!

It's all Kelly's Fault

2006-08-31T00:51:00.000-07:00

Well, I've been doing ok, but not great. Feeling a little winded, but still going about my business. Then today on the phone Kelly asked me if I'd had any bleeds lately, since the 4 a couple weeks ago and the streaks last week. So I told him no I hadn't.
A little later he comes home, early from work ( he had to go to work at midnight tonite, he left about 11:30) anyway, he comes home and wouldn't you know it, I go to lay down for a little afternoon nap and here we go. I feel the gurgling. I run to the bathroom. It was only small but you know, it wouldn't have happened if he hadn't asked me that. I think he reminded my lungs about it. So he's not allowed to ask me any more!

I've got such a busy month coming up. I have 3 weddings, a shower, a 15th b-day party...this is sounding familiar, did I already complain about this? I've already missed a going away party (Allyson's) and a bridal shower (Nicky's) because of feeling like crap...how much more am I going to miss. I try to not be too tired, try to not need to sleep from running fevers, try not to bleed (darn you Kelly, hee e heee) but I don't know how I'll do this month. I even volunteered to have the cousin lunch at my house. Silly girl. But I can do it....I'm sure!

I have another dentist appt next week, I have two doc appts, let's see what else I can fit in.
Ok, I'm just rambling now. It's weird having Kelly gone at this hour. I should be hearing him snoring, instead the cat is. Oh well, let's see if I can go to sleep!

Oh, and by the way, Little Miss Sunshine, yes, Wicker Man, yes, Night Caller, yes, Beerfest, a big fat NOOOOOO. Sorry number one fan!

blog blog blog

2006-08-28T11:06:00.000-07:00

I'm up early and nothing to do. I was supposed to go out with a friend, but she can't make it. But I didn't know that until now and I'm already ready. What to do? There's lots of house work to do, but I'm already all ready to go out. There's lots of yard work to do, but it's hot, blah.
I could go to the grocery store. That's always fun. Hmmmm. A movie? Nothing on.
Read my emails. Ok, guess I won't keep you all as bored as I am. Thing is if I sit still, I'll go back to sleep. Maybe I should just do that and re do my make up later.

I had a hard weekend. Felt sick all weekend. I felt like I was short of air and about to pass out all weekend. Not short of breath, which is different. I had this happen in the hospital, but only for a few hours, not for days. Today is better, not gone but better.

What else? I have no idea. I'll think of something really interesting to say and write later.
Bye

Time

2006-08-25T23:15:00.000-07:00

Wow, where does the time go? It is almost the end of the month, summer is almost over, even if in Calif. you'd never know by the weather. I can't believe it has been a month since the big event. Can't believe things are going on just as usual. Why is it when you are a kid, summer is so long, sometimes boring and you couldn't wait for something to do, or to go back to school even.
Now, the time runs by. I can't keep up with anything and there are never enough hours!!

Well, enough of that. Kelly is not going to Vandenberg for work, he is sending someone else. So I feel relieved. I really wanted him to go, but was nervous about it. Yesterday he came home and caught me on 02. I told him I had a little blood, not much, but 02 is the only thing I know to do, that and sit still. He had some other obstacles also, so he decided not to go. Then I was able to tell him I'd had some blood streaking Wednesday and Thrusday. Both the days after working in the yard. So last night and tonite I haven't really done anything. I did go to lunch and to the mall with a friend today, and I had a problem with the coughing and needing to get out after being in Cost Plus. I love that store but it is so dusty. So maybe my problem is dust, the dry dirt, dust in the store...hmmmmm.

Not much else going on. Like I said before lots to do. I have 3 wedding coming up, a shower, a dorm warming party, a 15th birthday party (quinceanera), and a block party. Yikes. This and house work, yard work (I am going to get it done!), and try not to bleed. So annoying.

Things are going well

2006-08-24T00:27:00.000-07:00

So far so good. No more problems since Friday. I've worked in the yard last night and tonite. I got one planter completely cleaned out, only 3 more to go in the front yard. I had a company come out to give me an estimate of how much to clean up the front and back, fix the automatic sprinkler thing, you know, the thing, and to trim all the trees and bushes. The cost, $1000. I about fainted. But I told them I'd call them back and let them know. I never called back. So I'm trying to do what I can and Kelly will do the mowing and edging and the top parts of the climbing roses this weekend.

Then he leaves for Vandenberg on Sunday for two weeks for work. I'm a tad bit nervous about that. But I'll get thru it. I don't know if I'll do any more working in the yard while he's gone. I don't want to push it with no one home!

So this is short and sweet. No problems health wise. Yahoo!

And the winner is....

2006-08-20T17:24:00.000-07:00

Megan...as in Kim's daughter. I forgot about copy/paste. That's not fair.
Tell her the prize is a hearty pat on the back, hee heeeee. Not the way to make for me being the favorite cousin that she doens't know anyway, huh? Did that make sense?

Ok, real letters

2006-08-20T16:26:00.000-07:00

Did you like the previous post? I just had to do it. Who knew there were letters like that? If anyone can figure it out you get the prize!! Yes it really says something.:)

Ok, so today I woke up and decided I'd take charge of the situation. I will not be the scaredy girl. I feel great, back to normal. Maybe I had a virus that messed up my already precarious veins. Anyway, I've picked up the house, vacuumed, did two loads of laundry, email, bills, filing, went to CVS and the grocery store, unloaded and put away groceries and now I'm resting a bit.

I'm wearing my dorky, I've fallen down but I can't get up necklace. I'm doing extra breathing treatments and I will not bleed again! Guess that is a little contradictory, if I really believed that I wouldn't wear the necklace! But I figure anything that will make my head feel better is good. So I've decided that dorky is the in thing...don't you wish you were as cool as I am? heee heee. Ok, so you can run and I can't....tough, I have the stomach muscles of ...well, ....of a CF person who coughs a lot.

Now I'm off to go read for a while before hunny gets home. He had to work today. Was supposed to yesterday, but he stayed with me while we were both on pins and needles. Dinner, hmmm, what for dinner? Anyone?

2006-08-20T16:24:00.000-07:00

Well today has been a good day. I wenwent to the store, I vaccummed, I ran some errands.. And no problmes. yahooo

Now if anyone takes the time to figure this out, I'll crack up!

P.S.

2006-08-18T23:56:00.000-07:00

10:30pm, another bleed. The 4th for today. Larger than the first 3, but not what they would call large. Long...took a while to stop. After a couple of minutes, I got Kelly up to wait with me. Was that wise? Should I call the doc? Should I go out to Orange? Should I sit and wait to see if there are more? What if there are, what then? Can I safely lay down and go to sleep? I'm so nervous.
These aren't the "I'm gonna die" kind. But 4? How big are they going to get?
Deep breath. Just relax. Wait and see. Worry. Hope. Cry. Alone.
I don't want to play any more.

starting with the good stuff

2006-08-18T19:47:00.000-07:00

Well, I thought I'd write all the happy stuff here. The fun, the good, the cool...
Ok, our weekend went great. I amazed myself by not thinking about bleeding in the middle of the desert until an hour into the trip. Only 3 more to go....But there were no incidents, no problems. Our little prius got 50 miles per gallon. Not bad with the wind, the hills, the traffic.
We just had a slow weekend, Kelly gambled and lost, Michelle and I watched the movie Fried Green Tomatoes...bad idea. Best friends, one dies. Hmmm, hand me the kleenex.
But nothing special, just relaxing. No problems on the drive home either. So yea for me.
I made it, no anxiety attacks.

Monday Kelly started back to work. I actually felt ok about it. I really haven't been worried. I've had a really busy week, actually too much to do. I've been to the dentist twice, I hate my teeth,
had cousin lunch (thanks for the ride Carrie) had my nails done and did some shopping for a bridal shower on Saturday. I have been feeling great, not using my 02 at all, having lots of energy.

Then yesterday late afternoon happened. Tired, achey, chills, little temp. Ok, take two aspirin and call me in the morning. Today I had an appointment scheduled to go back on the study drug. I almost called in to say I couldn't come. I was sick. But that's stupid, I need the med.
Woke up cold, turned on the bathroom heater and took a hot shower. I had a hard time getting out cuz it was cold out. Headache, body ache, temp, chills, short of breath. By the time I got to the doc's it was 102. My heart rate was elevated, no one knows why. They had me walk down the hall to do my PFT's and I had a bleed. Not large, very small by comparison, but I lost it. Not in a big way, just scared and frustrated. I cried, boo hoo. Here we go again. It's been three weeks since surgery. Each time it's 3 weeks after that it starts again. But like I said it was very small. So I cheered up and went about doing the stuff I needed to do. But they weren't sure if I could go on the study without doing PFT's, but I wasn't about to do them and possibly have another bleed. So the doc wanted me to go on the drug anyway, and he put me on two other antibiotics, in the form of pills. I've only been off of IV's one week. I will go back on if I need to but I really don't want to. So the drug study people called "sponsor" and they said I could go on the drug.
So I'm on three antibiotics. I was told if I don't feel better in 2 or 3 days to call back. Then when I got in my car, I thought I was bleeding agian. The drug study guy, Luis, walked me to the car. He asked if I wanted to be checked out and I said no, go ahead so he left. Bad idea. It was another bleed. I sat in the car for about 5 minutes spitting out blood. Now I'm really nervous. I have a long drive home and there will be traffic. Ok......go.

Driving, driving, driving (singing to music). Think I'll call Kelly and see if he can get off early and we can drive home together, or follow each other. Hello, hello, phone cuts out. Darn it!
Ok, I can do it. Driving, driving, driving. Should I drive in the fast lane and hopefully get there quicker or should I drive in the slow lane in case I need to get off the freeway? But the slow lane will make me crazy and I'll kill someone! I finally made it home with no further incident (in the fast lane).
Blah, blah, dinner with Kelly and tell him about my day, blah blah, savon for perscriptions, blah blah, Kelly goes out for a while (now) and I have another bleed. Larger than the other two. Ok, that's 3 in one day. What should I do?
I have my 02 on, I have my phone ready in case.... I hate feeling this way. I hate living this way.
Guess I'll go be very still and not do anything, although I wasn't doing anything but talking on the phone when this one happened.

A collective crossing of your fingers, toes and anything else that crosses would be appreciated.
Talk to the fairies, do your no bleeding dance. If I can just make it 2 more months I'll have surgery again. Yea, two months.....

Yet another doctor visit

2006-08-10T21:57:00.000-07:00

Yep, it was off to the doctor again today. But it was great. I'm finally off of IV's after a long 4 weeks. And my PFT's (pulmonary function tests) came back very good. My FVC (forced vital capacity) came back with an all time high of 51% of predicted. I haven't had a score that high in over 2 years. My FEV1 (forced expiratory volume in 1 second) came out at 35%. I usually hover around 31 or 32%. That may seem like a small difference, but 30% is when they like you to be listed for transplant. So I'm now further away, yahoo!. Also, FEV1 is the number they go by for qualification for a handicapped placard for your car. You have to have an FEV1 of less than 1.00liters. Mine is .99, so I just barely made it. I'm almost not handicapped any more, heee hee.
Oh, FEV1 shows how your large airways are working, your main stem bronchi and your trachea.
FVC is kinda like your lung capacity.
The only bad part was my FEF 25-75% (forced expiratory flow) is down to 12%. Yep, just 12. That shows what your actual lungs are doing, the small airways, like the lower and outer portions. So while my lungs show only 12% functioning, I am still able to do as well as I am.
They weren't happy that I lost a pound from last week. What's a girl to do?

Kelly and I then went to eat and to the mall in our new Prius, getting over 50 miles per gallon, and walked around. I did the whole mall with no oxygen and didn't walk any slower than normal. Only one coughing attack and it was a short one. Next thing you know I'll be jogging....maybe not!

So it's been a very good day. This weekend we are driving out to Michelle's house in Arizona.
It is sorta my implosion tactic to get over my fear of being out of reach of help. Wish me luck and hope I don't have an anxiety attack! We are only staying till Sunday morning then anxiety attack again on the way home. Kelly goes back to work on Monday, so I have to get used to being on my own. I think I'm ok really, but I guess we'll see!

So that's it. A very good day for me. Hope it was a good day for all of you!
Carrie, I'll see you next Wednesday! Merle too.

P.S. Check out USACFA.com Click on about us. I'm at the bottom.

nerves of steel?

2006-08-09T00:25:00.000-07:00

Last night and today I had adventures all by myself. Last night I went to the grocery store alone. I was nervous and more so when I realized I forgot my cell phone. The shopping part was ok, no rush, took my time. When I got to the check out line I was the only one there, cool you'd think. But no, then 5 or so people lined up behind me. So I'm trying to hurry, but bending over the cart to take the stuff out, putting it on the belt, trying not to let my 02 smack into the junk in the isle, trying not to use my arm with the IV in it...I was so out of breath. Then I paid and out I went. Putting the stuff in the trunk...a little hard. Then I came to the 12 pack of sprite. They put it down under the cart. I can barely squat down and get back up with the 02 on my back. And now I have to lift a 12 pack of soda? So down I go, I really struggled to get up, didn't think I'd make it but I did. Yea me!!!
I did leave it in the car when I got home for Kelly to get. That along with the other heavy stuff that didn't have to go in the fridge. Thanks hunny!

Then today, the dentist. I started getting nervous on the way there. What if they tilt me back too far and I can't breathe? What if the shot of novacain makes my heart race (it always does for me) and that makes the blood flow too fast and I break a vein or artery? What if.....

But it all went ok. I didn't let them tilt me too far. I did panic a few times with the water in my throat, just felt too drowning, like, well you know. But the shots didn't make my heart race, maybe it already was so I didn't notice the difference:) This is such a good dentist. The shots didn't even hurt except one or two times. So, whew, made it thru that!

After that, Kelly and I went car shopping. As of tomorrow we will be the proud owners of a Toyota Prius. Our payments are sky high cuz we were upside down on the truck, but the higher payments and gas will still be less than the truck payments and gas. And we'll be good for the environment! Yea us!

Lastly, I sometimes just want to hit people. Someone at Kelly's work actually ask him if he was now on vacation. Yes I'm doing better, no I'm not able to do all the stuff I used to and frankly I'm paranoid about being alone. I'm trying, that's why I had my adventures, but what a jerk. It's the way he said it, like accusatory. Yep, my wife almost kicked the bucket, so now we're on vacation, living it up! With no pay check for now I might add. Jerk. I feel good, but I can't imagine all this time being home alone. I'd be a basket case. Maybe I still am but more so!

I do have a good news item. We actually got approved right away for the hospitalization at San Antonios and at St. Josephs. Wow, they actually figured I should have been in the hospital this time with no arguments? Cool. Guess that's it. Off to do IV"s again.

chatty cathy

2006-08-04T23:21:00.000-07:00

I'm just being miss chatty cathy this week aren't I? Tonite it is because I just wanted to tell you what cool thing happened. My sister and I went out to dinner tonite at the Montclair mall. We were going to go to Olive Garden but it was packed with many people waiting outside. So we looked at Red Lobster, same thing. So we decided on Chili's. The parking lot was packed, but the waiting area wasn't. So Lynn dropped me off so I didn't have to walk far and she went to park the car. Well I went in the door and realized immediately it was some side door, not the front door to the place. There were two uniformed people sitting there which at first I thought were security. I asked them where the front of the building was and the guy said, "Hey weren't we just out at your place a couple of weeks ago?" Ok, hear brain clicking in, firetruck in the parking lot... not security. I said, if you were in Upland with a person covered in blood and not breathing, yep it was me. But I don't remember anything. And it was him. It was so cool to be able to meet one of the guys that came to help me and to say thank you so very much. I told him I was so happy they didn't let me die! We talked a bit about CF, he had questions and wanted to know why I was bleeding. He has a friend with a child with CF. I teased him and said "and you ask if I had a DNR" He said they have to ask, and I said, no that's when you know it's bad, you don't ask people with a broken leg if they have a DNR. He laughed. I wish I could have met the entire team, but it is nice to put a face to at least one empty memory. They were amazed I was out and about especially when he realized it was just two weeks from tonite that they had been called.

The big coincidence is that he is Upland Fire and I live in Upland. This restaurant is in Montclair. He said he was just helping out in Montclair today. If he hadn't been helping out outside his usual city and we didn't feel like waiting at Olive Garden or Red Lobster, then we would have never run into each other. Now that's cool!

2006-08-03T12:08:00.000-07:00

Just a quick pointing out that I said 2/3, as in two thirds of a mile, not 3 miles!!! I wish I could go 3 miles.

And, nope, I hate bon bons and I hate coconut! So there!

:)

Doc visit

2006-08-02T23:52:00.000-07:00

Had my visit today and it went well. The bug I was exposed to is no big deal, nothing to worry about. Whew! My PFT's were the same as before the big "event". Actually a little better. I knew they had to have scraped out some gunk while they had me on the vent. I'm still on IV's for another week, I'm still supposed to gain weight, and I'm still supposed to take it slow. I don't know about that...there is so much to do!

Kelly and I walked around Ontario Mills today. As you may or may not know it is 2/3 mile around. I could walk it just fine. Walking and talking however...not so good. So Kelly got to hear silence for a while! But I felt fine during and after. That could be because after the doc's I came home and slept for almost 2 hours. I just can't get up that early, blah.

Tomorrow, we are going to stop being lazy here. Kelly doesn't know that yet, heeee heee.
But he will! There are chores to be done. Yep Jeri is right, I've always been the cleaning girl. But I've been slacking and it's time to get back in gear! I know my hunny will be so happy. :0

K, that's all, off to do more IV's!

What, no white light?

2006-08-01T22:35:00.000-07:00

I have been doing some thinking and I just have to say, I didn't see no freakin white light last week, or any of my loving passed on relatives to guide me into the missing light...what the heck? My life didn't flash before my eyes, and I didn't relive any great or sad moments. Hmmmmm.
Because that is all hooey or because it wasn't my time? I don't think I mentioned, because I didn't recall, that Kelly had just gotten home about 15 minutes before the "crisis". Hmmmm. It really must not have been my time. But we've decided that we are not going to do this again. It is not acceptable. So you won't have to read any more stressed out blogs, we're just not going to have this happen again. K? Ok!

I have a doctors appointment tomorrow. I've been coughing a lot and found out today that I have been exposed to Serratia, which is a rare gram negative bacteria. From a visitor that didn't know she had it. So now I'll have to be tested. Don't know if that's what is causing my cough, or if I just have allergies. I wonder with this weird weather if my sinuses are hating life.

Anyway, nothing new on the home front except that I feel pretty back to normal. No worse for the wear. Isn't that odd? You'd think there'd be something lingering. But other than my wacked out mind, I'm fine. And maybe my mind has always been wacked out...another, hmmmmmm.

Thanks for all the comments posted during this time. It really helps to read them. I love getting comments! I hope to see everyone soon and you'll say I just look like normal. You will say that, right?

My memory of the story

2006-07-30T00:15:00.000-07:00

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.

hi everyone

2006-07-25T21:36:00.000-07:00

Hi everyone,
I"m not up to date on what everyone is doing but I sure hope everyone is good. I'm doing ok...trying to be upbeat! I know Kelly has kept you all updated for me, he's my hero! I'm having another surgrey tomorrow. I guess they went back and were looking at all the reports, scan's whatever, and found a few more places they think need to be glued. I'm telling you, take stock out now. I don't want to have another surgery but I'm very glad they are trying to get everything before I go home. I am pretty terrified still of it happening again and me being alone. What would happen then? Anyway, I'm more upbeat than this email sounds. I'm just tired tonite. I have lovely blue arms from fighting the vent guys, hate those vent guys, hee heee. They probably aren't thrilled with me either! But they saved me. You all helped save me too. Your messages and prayers mean more than you'll ever know. I cried reading them. I will try to get back to everyone eventually. Oh, I did get to lower my 02 to 2 liters again. I'm not sure if that is enough, but we'll see. It's my usual for sleep or exercise.

So, I'll keep this short and maybe write more later. Thank you all for being there.
Love,

A Long Day

2006-07-24T09:37:00.000-07:00

DISCLAMER: Details may too difficult for some with similar tragic experiences.

Some days start when I wake up to go to work and end when go to bed. Those are short days. This day started at 9:30pm PDT on July 21 and ended 12 noon on July 23.

“Kelly!” Is how it started. I ran into the bathroom and heard it before I saw it. The sound of thick fluid poring into the sink was something I had heard before but this was different. It was louder and thinker. Then I saw her. Blood was everywhere. “Air! Air!” she said. I ran to the machine and put it on. She signaled to crank it up. The blood still was coming. “911!, 911!” She said. Our greatest fear was becoming a reality. I called and waited. Helpless and powerless I waited. I thought I would try something we had talked about.

“Carol, your body is going to stop bleeding now. Your body is starting to heal it self. The paramedics are on the way and will be here soon. You’re going to make it to the hospital and your going to be ok.” I said this one more time and she started to drop down. I think she knew if she sat down she would never get back up again. She kept pushing me away. I held my and hand on her side and could feel and hear the blood in her lungs. Then she sat down on the toilet. As the firemen came down the hall way I could hear her whisper, “I love you.” All I could do was say, I love you too. Then her eyes rolled over and the firemen took over.

“Does Carol have a DNR?” one said to me. Shock set in. They where looking to me. I was trying to remember what we had talked about before if something like this happened. I couldn’t remember. What I did know is that Carol loves life and has never wanted to die. I said no we do not.

10pm.
I arrived at the hospital and was terrified they and ventilated her. I kept asking to see someone to tell them not to vent her. Finally the doc came out and started asking questions about why it was not good to vent. Then he said they had already done it. Her saturation levels when she arrived were 20%. The only option to keep her alive was to ventilate. If I wasn’t in shock before, I certainly went into it then. I asked about transplant and he said she was ineligible while she was on a vent.

Sometimes the best decision is no decision. So I said I would just ride out the night. At 4am she was transported to ICU. I stayed a few min and went home to rest. But when I got home I couldn’t sleep and went back at 7am. We got to meet the lung doctor at around 10am on Saturday. He seemed to be nice but was not experienced with CF. I found out later that when she came in, they didn’t believe she had CF due to her age. They thought it was an example of people thinking they have something but never been tested for it. Well, seems they got it wrong.

About an hour later her doctor from CHOC called ICU and asked to speak to me. He told me that the numbers on the Vent showed that Carol was doing most of her own breathing and that he didn’t see any problems when she came off on Sunday. I can’t begin to express my relief. So I stayed till 9pm on Saturday and tried to come home to sleep. I had a friend stay with me. I finally got in bed at 10 or 11pm. However, I just couldn’t sleep. And gave up at around 2am and got dressed and went back. I stayed with her through the rest of the night and into the morning.

11am Sunday
The lung doctor arrived and said they where ready to remove the vent. They took her off the drug which kept her under and she slowly began to come awake. He told her they where getting ready to remove the tube. He asked her if it didn’t work, does she want it put back in, she said yes. I asked a friend of Carol to come to the hospital. She knows sign language. Her efforts helped us understand that she was in pain from the tube. When we told her they where going to take it out she started to point and say, “They are going to kill me.” We helped her understand that she was not going to die when they took the tube out. It took a few times but I think we helped her.

Then the tube came out. She breathed on her own. And she cried. I cried. This very long day for me had finally ended. The nightmare was over and I finally woke up. I still didn’t get to bed till about midnight on Sunday. After 6 solid hours of sleep, I’m ready to face another day with living with someone with Cystic Fibrosis.

Kel, (AKA #1Fan)

Carol

2006-07-22T02:32:00.000-07:00

Carol is in ICU. She had a major bleed and is now on a ventilator. Please think of her in your prayers.

Kel

Feeling bad

2006-07-16T15:09:00.000-07:00

Wow, I'm sure having a hard time with my IV's this time. I started on Friday evening and went to bed with a raging headache. It was still there Saturday morning, but not too bad. But my whole body aches. I feel like a walking bruise. I went and did some things, saw my cousins, saw my friends, then came home and did IV's again. My head felt like, and still feels like, it will explode if I cough. I took a two hour nap yesterday, still woke up with my head hurting, I've taken ibuprofen, tylenol...what else is there? Last night I took a sleeping pill because my head hurt so much I didn't think I could sleep. I woke up several times, running a fever, having chills, and of course my head and body hurting. It's 3:00 now. I am supposed to do my GI cleaning today. I don't know if I can do that also. Running up and down the hall way to get to the restroom doesn't sound like it is going to help my head any. I'm going to call the doctor tomorrow and see if he can do something. I can't hurt like this for a solid two weeks.

I'm sure the heat isn't helping. Our airconditioning is running almost non stop. It is so hot! Last night at 9 I went out to turn on some water and it was still hot. Well, I'm off to go close my eyes and try to think un painful thoughts.

My doctor visit

2006-07-13T20:28:00.000-07:00

Tuesday was my doctor visit to see the GI doc. I have been having all kinds of problems, least of all is that I look pregnant! So after meeting with this obnoxious man, who mellowed out at the end of the time, is having me do a total clean out, not fun, and then I have to take a medication to keep me from...well....getting pregnant looking again hopefully, then I have to start taking more enzymes with the other medication. On top of that I have to have a pelvic xray and ultra sound to see if there is anything there that shouldn't be and blood work. Did you know hypothyroidism can cause stomach problems? Well, I already know I have hypothyroidism but I'm on medication for that. Yes I have that too. He is wondering if I'm not on enough.

Then on top of that I have to go on IV's. I had no plans to see a pulmonary doc. I just saw one on Thursday prior. But since I've had all kinds of stuff and am so short of breath he decided to put me on IV's so I'll be good for our trip. I told him I'm also going to take prednisone on the trip. It helps so much I don't care about the side effects. He said that's fine and we discussed doses. I actually have been taking it for two nights now and I feel wonderful. I don't think I need IV's but oh well. I will only take the prednisone for 5 days then go off and will feel like crap again so the IV's will probably be good!

Other than that things are good. I finally finished my bag today. My sister came over last night to show me the last stuff, then I almost finished but of course sewed the bottom up wrong so I had to rip it out. I did that last little bit today. yahoo!!! That only took me how long?
My cousin Kim from Washington is here to see her sister and her dad. She's going to stop by on Friday afternoon, then a bunch of us cousins will have lunch on Saturday at the Olive Garden.

Oh, my arm is a tad ripped up. Only 3 cuts really. We were trying to trim our cat's claws. They're so long. So we got the first cat done but it was way harder than the other times we've done it. She wanted no part of it but we finally got them done admist much howling and yowling. I always wanted to use that word, admist. Anywho, then I went to get the other cat. She usually has no problem with me picking her up and she didn't even like that. On the kitchen counter she had a hissy fit. Kelly could only get one and a half feet of claws trimmed. She just went crazy. Then she tried to jump down and I didn't want her to because she's so old and crickedy I didn't want her to get hurt, so I tried to help her down. Bad idea. So I'm not sure when I got the cuts, but they hurt! I had about 15, but only 3 really bled and are still visible. My gentle kitty is not nice. So, it's off to the vet with her! She won't give them a hard time. Plus she has a sore on her tail, so she needs to go any way.

Otherwise, it's just hot. I'm keeping busy, more busy than I really want to somehow.
Oh, Kelly's friend Cambria came to stay for a night. They got to spend some time together and then she and I did after he went to sleep. I had the doc appt the next day so we didn't get to spend too much time the next day but we went to lunch. I'm so glad she doesn't like the stupid TV shows Kelly does, it was 2 against one. Yahoo! If you're out there Cambria, thanks, heee heee. We hope she'll come again when she and we have more time. Nope, not one of those we wanted her to go away quicker!

Guess that really is it. Kelly's truck is in the shop, again. It's only two years old. Too many problems. So he has my car and I'm stuck. It's too hot to be out and about any way!
Have a good day everyone!

hey, i have a picture

2006-07-09T23:02:00.000-07:00

Cool huh? Kelly figured out how to do a picture for the bio I had to do. I hate taking pictures! I have a crooked face! And don't tell anyone, but my shirt didn't match my shorts, hee hee. They wanted only a head shot, but that's just too darn close for me.

K, gotta go. Lot's to do tonite! Bye!

test pic

2006-07-09T19:13:00.000-07:00

Test Picture of me.

be bop do dooo deee

2006-07-07T16:34:00.000-07:00

Not a whole heck of a lot going on. Let's see. I have to send in a short bio by the end of the week, with a picutre. Jpeg?, for the CF Roundtable, a news paper that the USACFA puts out. What the heck is that? I dont know how to send in a picture. Oh no, I'm in trouble already. And I have to write an article about myself. That will be ok. I can just say I'm married and have two cats. Think that's enough?

I am looking forward to the conference so I can get some more info about what is expected of me. I'm also looking forward to the cooler weather up there. I remember last time I went it was wonderful. I really want to live up there. But can you say, expensive?

So, I guess that's all!
Oh, wait. I went to the doctor's yesterday. Was planning on starting the drug study drug again. But noooooo, I have to wait another 28 days. Suck. They have the approval but not the consent. What is the difference you ask? I have to sign the consent and apparently they didn't send it yet.
So another month of no good med's. I hope I don't end up back on IV's because of it. I'm doing 28 days of colymycin (sp?). It is for IV's but I'm doing it nebulized. Hopefully it will hold the bugs at bay for a while. I am highly allergic to this med when used in IV form. But so far no problem with it. It is one of the few drugs that all my bugs are susceptible to.

Ok, now that's all!
Bye

The party

2006-07-03T23:22:00.000-07:00

This past Saturday was Lynn and Denny's house warming/reception party. It was very nice. I think people had a good time. I know I ate like a cow and paid for it later. But I did get to take left overs home, yummm. Lynn seemed very happy with the turn out and says she wants to have more family parties.

After I came home I was so tired, I didn't do anything but take a nap. Sunday I just couldn't get motivated. I don't know if it's the heat or what. I got up at 10:30ish, took two naps during the day and didn't take a shower till 5 o'clock when I couldn't stand my self any more. I did make dinner, frozen pizzas. Whew, a lot of work:)

Today again, I just felt lathargic. I got a few errands run and cleaned one bathroom. woo who...
Tonite I did get a lot of watering done. The cold water felt good. I think I watered myself as much as the plants. While I was watering I was looking at all the weeds and thinking, I should really pull those. Maybe when it cools off....in October!

I hope when I go to the doctor on Thursday and get back on my med's I won't feel so bad. I'm tired of wearing 02 even at home and tired of being tired. My house needs me to feel better.

I think that is all. Tomorrow is the 4th of July. I always want to go to really see a fireworks show, but it's so hot, when the time comes I don't want to go. At Upland High School, I think I saw a sign that said gates open at 5. Oh my gosh, it doesn't get dark till after 8. What are you supposed to do in this heat for 3 hours? So yes I want to see them, nope not going to. Maybe next year I'll find a beach house to rent and see the one's at the beach. That would be nice.

That's it I guess. Going to go stare at some more TV.

Is it winter yet?

2006-06-30T22:51:00.000-07:00

Oh my gosh, it is so hot I think I'm going to die! I went shopping today. I made it to all of one store. I couldn't believe how many people were at Victoria Gardens, outside. I guess people are a lot tougher than me!
Nothing much to say except I'm not feeling too great. Haven't for several days now. Using my 02 a lot more and doing more breathing treatments. My blood sugars are off the charts. In the 5 and 400's. Then I finally got it to 250 and for days couldn't get it below that. Then tonite out with Kelly of course I crash. It was at 60. Had some cake. Still felt bad. It was at 40. Had a candy bad and some soda. Two hours later it's at 318. Here we go again.

I figure if I can just make it 7 more days, then I go back on the study drug and hopefully it'll help the infection so I can breathe better and less infection will help me get my sugars back in control. It's so very annoying.

Anyway, I wish it was December and raining and cold. Yep I need to move to Washington!

You can call me Mrs. Director

2006-06-27T21:24:00.000-07:00

Well, I got the notice that I was voted in as a Director for the United States Association for Cystic Fibrosis Adults, Board of Directors. Now I just need to know what the heck I'm supposed to do!
I did find out that they pay for the CFRI conference, that's cool. If I had known I was going to apply and that they pay for the flight, hotel and conference fee's if you get voted in, I wouldn't have used the last of Kelly's frequent flyer miles. But they are going to pay for the hotel and conference fee's. That will help so much. They pay for spouses also, but the spouses have to work. They have to serve food at the meals, as people with CF can't touch serving utensils, salt and pepper shakers, water pitchers, all for cross infection purposes. He'll also have to help with setting up and tearing down some of the conference stuff. We practiced at Coco's the other day when I made him pepper my food! Hee heee heee. I'll be playing this for all it's worth!

I was helping at Lynn's today, organizing her kitchen. I had fun, yes I know I'm weird. I think I made it much more efficient. I've decided she definately needs kitchen stuff, serving bowls, a new coffee pot, towels. I think everyone should get to have a old house shower every ten years so we can all get new kitchen stuff! That would be a fun tradition. But we'd spend so much on buying stuff for everyone's party that we might as well buy our own. Although it is more fun to buy and receive gifts than to restock your own kitchen!

So now I'm wooped. I'm going to go sit on my keishter and watch tv.

A nice week

2006-06-23T23:02:00.000-07:00

Hi all,
Boy I had a really nice week. My friend Joyce from Austin Texas came out this week.
She is always one person that while we don't see each other too often, or even keep up with our emails for that matter, when we get together it is as if we see each other all the time. No awkward pauses, no lack of things to talk about. It's so nice.
I'm sure she had an agenda that I totally messed up! She wanted to help me out, make food to put in the freezer, clean house... But I was feeling good so I drug her all over the place, took her to cousin lunch (and it was a big one this time!!, 18 people.) I got to see my cousin Scott that I haven't seen in 30 years. That's sad. I met his wife and their kids. What nice people. Anyway, I took her to Lynn's house, took her to the mall. I cooked once and we wanted to take her out to eat once and she cooked once. That's about all we managed to get done together. I did make her eat about 100 more times at really cool places like Del Taco and Weinerschnitzel (sp?). Sorry Joyce! The dinner she made was really great. I can't remember the name but I remember how she made it. And Kelly liked it so now I have to cook it! Darn!

While I was sleeping, Joyce was also a very busy girl. She cleaned out shelves in my garage that I had been meaning to clean for ages. She fixed a sprinkler problem we were having (of course requiring that we go to Orchard 25 times) and she cleaned off the entire patio, with water, and spray painted the old ratan chairs and table bottom so they'd match the white wicker. She also recovered the patio chair seats.

But today was a sad day. Joyce had to leave...and she had to leave with 15 stitches in her leg. She was putting the patio back together and the glass table top fell and cut her leg in two places. She comes in and quietly wakes me up....Carol, we need to go to ER.
Yikes! I felt so bad. I could care less about the table, I was so worried about her leg. It didn't bleed too much but was sure deep, about 3/4 inch. They had to put stitches inside then outside. It was interesting to watch, but I'd just as soon not repeat. I haven't talked to her since she got home, but I hope no one bumped her leg on the flight or that hanging it down for so long didn't cause too much pain. Because we all know how Southwest has oh so much room between seats!

I want Joyce to move to California! Maybe some day. Kelly was calling Joyce, Joycie like I do. I don't think my brain can call her Joyce. Kelly thought Joycie was her real name. :) He was even like, she was here all week and I wasn't all wanting her to leave! We've had some guests that by mid week, we're done! Anyway, I so appreciate all she did for me. She was so mad at herself for getting hurt because she wanted to clean the house before I got up and vacum while I was in the shower. Ha, no extra work for you! And I got to be useful for a couple of hours. When I was pushing her in the wheelchair she just shook her head and said now isn't this ironic. Kinda funny once she was ok.

Kelly came home from work after I called him from the hospital. He cleaned up all the glass and told Joyce the bad news is now that the table is broke, we're going to get a new set and all that spray painting was for nothing. What a brat! I was teasing him that he used Joyce to get off of work early. But I was suprised, well not suprised but my heart felt all squishy that he was truly concerned for her and didn't want our house guest to be doing anything while she was hurt. He wanted to help. He kept saying how bad he felt. I kept telling him, and Joyce, it was just an accident. But I felt horrible for Joyce too. It didn't hurt too much she said, I just hope that continues.

Joycie if you're out there I hope you are still ok and that Paul lets you come back!

But we wouldn't want TOO much good news. So I had a nice medium size bleed tonite, just to calm the tone down around here. I'm thinking that I can be all normal....not, says my body. Baugh humbug. We'll see about that.
See Joyce, stubborn it is!

Tomorrow is tea with Michelle, Liz and I don't know who else. Sunday I'm helping my sister with some organizing, which is my thing you know. Need to shop this week, party coming up! And Wednesday a lunch with my friend Shannon. Busy, busy. I like that. Think I'll squeeze in a movie or two also. Hmmmm.
I'll sleep on Thursday!

Good night!

2006-06-18T22:12:00.000-07:00

I'm so excited! Tomorrow my friend Joyce is coming from Texas to visit. I got to see her last year for a few hours but not for 3 years before that. She said I'm not to do anything special for her coming out. So ok...but I did clean house for ya!
I have so much I want to do. We'll see how it goes. If it stays 100* I'm staying in the house the whole time!

Last night my friend Michele, that I"ve know since 3rd grade, her girl friend Jill and their friend Helen whom I used to work with at Mervys years ago, came out to visit. We went to dinner at a little restaurant in Claremont and then hung out at the house. It was so fun talking and hearing about their work and what they do. I sure wish we lived closer to them, it would be nice to see them more often. Helen is getting married in October and her house won an award for historical restoration. They live in Fullerton. Cool.
Michele's business is going strong and "morphing" into other dimensions. She has some really interesting clients. I don't understand it all! But what's new. Jill is a nurse practitioner in gynocology. Such busy people.

Got a call from Lynn today. The housewarming and/or reception is going to be July 1st. I'm going over next weekend to help with some organizing. It's my thing. It's what I like to do!
Her dogs have been sprayed with skunk again. The big dog, this is his 3rd time. He just doesn't understand why the striped animal doesn't want to play. The little dog got it for the first time. Anyone know of a good remedy to get rid of skunk smell?

And that's it. I wanted to work on the patio today, but it's just too darn hot. Is is going to be winter soon?

Feeling better

2006-06-14T19:47:00.000-07:00

So, I'm feeling better, emotionally and physically. I worked in the yard Monday evening and trimmed a row of overgrown plant in the back yard. No power tools needed, but it was still hard work for me. But I did it! And I went shopping today for 2 hours without any 02. I took it with me, but when I went to turn it on the air pressure all left so I couldn't get any 02. But I did ok.
Crashed once and had to go get a cookie, oh darn, and then back to shopping. I found some nice summer clothes. Tomorrow I'm going to get more!

My point is, I'm gaining some strength. A month ago in the grocery store, the boxes of bananas were on the floor. So I squatted down to get some bananas and with the weight of the 02 on my back, I couldn't get up. How humiliating. I had to grab the counter and try to pull myself up. Today, I was able to squat down, wearing the 02, and then get up without aid of a counter to pull myself up on. I am feeling more comfortable carrying heavy objects for a short distance. I think I can walk further. So I'm getting better..

I ran into one of my ex sister in laws today. She seemed suprised to see me. I was a bit embarrassed as I don't like people whom I haven't seen in a long time to catch me wearing 02. Oh well. She said she was shopping there to relax, but after we talked I think sh jetted out the door. Chicken!

Let's see, what else? Oh, I applied for the USACFA. I found out I can't apply for Catharine's position. I have to be a "director" for a year first. So, ok, I apply for that. Then I find out I need to send an actual resume, not a letter. Shoot, I haven't had a resume for 14 years. I haven't worked in 8 years, my how time flies, and then had my job for 6 years before that. I don't even remember what to put on a resume. Won't it look bad with 8 years of nothing? Plus, I can't really put what my goal is, or my understanding of the job is, as I have no idea! I just figured they'd tell me what to do and I'd do it. I have looked on the website and no where does it say what directors do. Kelly said he'd help me with the resume...hmmmmm

Think that's about it. Joycie is coming on Monday. I'm so excited. I got to see her last summer, but only for a few hours. It's been a lot of years since we spent any real time together. I went to Texas for her 40th birthday, but I was so sick I was no fun what so ever!! So hopefully we'll do some stuff that's fun. Saturday Michele, Jill and Helen are coming out for dinner. I think we'll go out. Where to go? And that my friends is my life. Not too exciting, but not too bad!

And my number one fan isn't an ass for saying "nice to see you" to Ken at the funeral. It's just one of those things. Funerals are hard and your mouth sometimes just says stuff. The people in line before us asked Ken if he'd be at work next week...Peggy was apalled and said are you joking? The man just stammered, oh, I forgot. Where the heck did HE think he was?

So things are good. Hopefully for a long while.

The funeral

2006-06-10T22:25:00.000-07:00

Today was the funeral of Catharine Martinet. It was a Catholic funeral mass. It was nice but I found it to be a bit impersonal. But even with that I couldn't stop crying. It was very interesting that they had Jewish readings for Catharine, as they said she was very proud of her Jewish heritage. They also served Matza as the communion wafer. I was really happy that a Catholic church would make that concession. The priest was also a close friend of the family and it seemed that he struggled with the idea of doing her service. But he did a wonderful job.

At the end of the mass they had Catharine's best friend speak. I learned a lot about Catharine from her and it only made me wish I knew her better. Also two of Catharine's cousins spoke. They seemed more real and sad about losing "little Cathy" as they called her. They spoke of an intelligence and humor that I only was able to see glimpses of. I still can't believe it is real.

After the service I got to speak with her parents, Ken and Peggy. They are both still in shock I think. Her father said they just couldn't believe it. That in just a few house she would have had her transplant. When her mom hugged me...really hugged me and held me, I just sobbed. She said she's been doing the same thing, that she can't believe this has happened. I wish so much that I could make it all better for them.
I saw Ray at the service, he was with her parents. But we didn't see him after. It may have just been too much.

We did see Judge Lance Ito. He performed the wedding service only just over two months prior. He looked very sad. There had to be 300 people there. Catharine was such an inspiration to people she met. There was just something about her that made you want to be in her circle. Apparently many others felt this way too. Outside they had areas set up with food and cool drinks and a few tables scattered around. That seems much easier than having to have all those people at your home when the last thing you really want to do is serve or entertain or clean up after them.

It was a hard day for Kelly and I. I'm so glad he went with me. He had to go to work this morning for an emergency and I wasn't sure if he would make it but he did. I would have been a real mess without him there. I'm so glad he is my rock. I wish Catharine and Ray would have had more time together.

Cystic Fibrosis...such a cruel disease. It takes so many before their time. It breaks up families, drains you of your money, your energy and your hope. At the end of the entire service, the priest ask us to all take a deep breath for Catharine. It was a beautiful sound.

If you'd like to see pictures of Catharine and learn a little about her, go to www.cathymartinet.com

6/6/6

2006-06-07T00:38:00.000-07:00

It's been a busy day. I've tried to keep myself as busy as possible because if I don't, I find myself crying. So I went to two movies today. First, The Break Up. Not so good. Much too true to life. I grew up hearing and watching fighting, so it was't too fun. Not as much of a comedy as it presents on the previews. But it was nice to have to get up and get ready to do something. Then I went to the grocery store, had dinner with Kelly and went to see the Omen tonite. Darcie and I were going to see it at 7, but it was sold out. We ended up hanging out for a few hours and then went to see it at 9:45. It was really nice to hang out. We went to eat, talked and then to the movie. I couldn't believe the idiots who brought kids. Babies were crying, but at least they weren't old enough to be frightened. Then there were 5 thru 10 year olds there. What kind of parents bring young children to the Omen? I hope they get no sleep for the next two weeks becasue of the kids nightmares. It serves them right. Although I would hope the kids wouldn't have to suffer thru nightmares.

Anyway, now it's after 12 and I have to do all my night time stuff. Hope I don't have nightmares :) My kitties and Kelly will keep the boogyman away.

So during this day of trying not to think, I did anyway. I have decided to try to volunteer for Catharine's position on the Roundtable news paper. It is a news letter for CF adults, by CF adults. I've written a couple of article for it before. She was the corresponding secretary. I don't even know what it envolves, but I will try to do it. I will never be as good as Catharine was no matter what the job is but I'll try. I wrote to the person who founded the paper, a wonderful woman I met a couple of years ago. She said it is a great idea and that I need to send a brief resume to the current president. So I'll do that tomorrow. I hope if I hold the position I will do what ever it is in as good a fashion as I can to help me hold on to the memory ofCatharine. Does that make any sense? Elections are in August at the CFRI conference which I think Kelly and I are going to.

The funeral is Saturday. I just ran out of things to say. I'm sitting here blankly staring at the monitor so I think I'll quit.

catharine

2006-06-05T17:02:00.000-07:00

My friend Catharine died today, just after her 45th birthday. I will miss her. She is so smart, kind and giving. She did a lot for CF, was very involved in writing, raising money, and just encouraging people when the needed it. She and her husband only got to live in their own apartment 2 weeks. Her parents must be devastated. I am devastated.

Catharine

2006-06-04T23:13:00.000-07:00

Well, Catharine was intubated tonite. I know that like me, this is one of her greatest fears. I am so praying she will find a donor on time. I guess live donors are going to start testing on Monday.
I am not a praying person, much, but Catharine is just such a sweet person. Not that anyone should die like this, but Catharine especially. I will be going on out Tuesday to see if her mom is there, also to attend the tx support group to hear about the changes they've made to the program. I hope she'll be a little better by then? Off the vent? Please

not much blogging going on`

2006-06-03T22:55:00.000-07:00

It seems like a long time since I've posted. But it's not for a bad reason, it's because nothing is going on. I have been feeling good, running fevers almost every day, but oh well, they are just little any way. I've been doing a little yard work, but today it got so hot, I will be doing very little till, oh, October! I get about an hour at night when it is a bit cooler and that's all I can handle.
I've been doing some house work. Don't need to hire the maid back yet! She did a good job, but I like not paying someone. Oh, I'm cheap!
I'm in the mood to go shopping, in a bad way. But I won't. Or maybe I'll just look...that will always get me in trouble.
So, now I just have to get my tush to the gym, start playing piano, practicing sign and Spanish...and I'll be doing everything I want to. Yikes, I need more hours! I should give up TV, but I love my soaps. Thank goodness for soaps now, there is nothing else on TV. I tivo them and watch them at night when Kelly is sleeping. But then that leaves the weekends. I finally might get to the movies Merle loaned me. I've watched two of them. So far so good. After I get off here, I'm going to watch another one tonite.

So, all is good. Cross your fingers for a long streak of boring posts with nothing bad going on!

Oh, I forgot. Over Memorial weekend, we went to Lynn and Dennys for a bar-b-que. They had the best steak...I ate enough for 3 people. Everyone was laughing at me, because I guess I eat steaks different than everyone else. It was this big ole steak, it had a bone and some fat on one side, so I ate up the middle. Then a little to the left...it had a bit of an "L" in it by the time I was done. I started cracking up when Lynn called it to my attention. I didn't realize...ok, so I'm weird. I used to eat corn on the cob funny to. I'd make a checker pattern by eating every other bite. But I don't do that any more...I'm an adult, humph. My nose is firmly up in the air!
Anyway, we had corn on the cob, garlic bread, a couple salads that I never got to and then watermelon. I ate about 6 servings of that. I am such a cow. Lynn said she hadn't seen me eat like this in a long time...that it was good. I told her yea, and she can buy the new wardrobe!
We are going to try to do this more often. It was fun.

The welcome to her new house and happy getting married party will probably be sometime this month. Toward the end I think. I'll be getting her some out door stuff or some kitchen tea towels and stuff. She needs it! It is so weird to call Denny her husband..it's been so long as her boyfriend. They seem very happy with the new house and with being married. Yahoo! That's the way it should be.

The bad news, my friend Catharine is in the hospital at USC. She is awaiting a lung transplant. She got sick and had to go in and she also has pulmonary hypertension and that is causing huge problmes. I found out today she is in ICU becasue she broke open a bleb. It is a cyst filled with air near the lining of the lung. It pushes air out and can cause a pnuemothorax. For her it didn't but she is in ICU and they are having to keep an eye on her. Today is her 45th birthday. I wish so much there is something I could do. She is getting offers of lobe donors, so I sure hope two of them are a match. She is one of the, if not the, nicest person I know. Her parents are wonderful and supportive and she also just got married a couple of months ago. If you would say a positive word for her to whoever you talk to be it wishing on a star, calling grandma ( or in our family Aunt Mertie) for help. She can use all the help she can get.
Thank you

So much for improving

2006-05-27T22:14:00.000-07:00

Well, I woke up this morning shivering. I was awake for quite a while before I could force my self to get out of bed because I was so cold. Kelly was up and in tee shirt and shorts so I knew it wasn't that cold. My temp was 100.8. I also was feeling very tight. Not congested but like there was a lot of inflammation. I kept my 02 on. I ate breakfast and by then was shivering so badly, I wasn't sure whether to call Kelly for a blanket or what. But I went in the bathroom, got the little heater and just sat there till I was warm. Finally I came out and just sat for a while. I have worn my 02 all day almost. I have felt bad all day. My hips, back, ribs, knee's and elbows hurt. Laying on my bed felt like laying on bricks. Kelly and I went out to eat and all was the same. Got home and my temp was back up. About 9pm, I had a small bleed and a temp. Of course at dinner we were saying it's been 5 weeks since I've bled. Us and our big mouths.

On top of this, Kelly is sad. A friend of his died yesterday while waiting for a liver transplant. He didn't tell me until today. My depression was lifting, but after today, I don't know. I think I'll just sleep all day tomorrow and forget it.

Trying to improve

2006-05-25T22:23:00.000-07:00

I read another blog of a person with CF. Her name is Debbie. She has gone many months without getting sick and is feeling so great. I wrote to her and ask her how she has done this.
This is what she wrote back. Debbie, I hope you don't mind that I publish this.

So how to explain the improvement.....well, about Jan 2-3, I was pretty freaked out.....knew I had to do what I could to stay in good mental health
I went to counseling
I read a lot of books
I asked for help, very hard to do as you know! But people came and cleaned my house, did errands for me, etc.
I began meditating and visualizing
I watched funny movies
I talked to people
i began taking some vitamin and fruit supplements
And I began walking. In Jan of 2005 I could only walk for 4 minutes including 1 break. I am now up to 24 minutes without stopping.
I did all my treatments, I took all my meds
I went and sat outside every day even in winter and only for a few minutes but it helped
I changed my pajamas everyday, and tried to shower every other day at least
I drank, and still do, a scandishake every night

So, thank you Debbie for these suggestions. Also thank you Bonnie (another person with CF) for your input. I will try to put some of this, if not all, into action. If anyone reads the comments on the last post I wrote, you can click on their name and read their blogs. Very great people.

I got a call from my nurse yesterday saying she needed to talk to me about my synergie study. That doesn't sound like good news. But she also said she wanted to talk to me about trying colymycin nebulized. That sounds like a good idea to me since I can't take Tobi. It would be on the off months of the study drug Aztreonam. The only problem is that I am allergic to Coly. Severe itching, like rip your skin off itching. Hopefully the nebulized coly will not be as strong in my blood stream and I'll be able to handle it.

So, I have to go now and do my breathing treatments, pills, shots, inhalers, and maybe even a vest. See, I am going to start now. After this I'll make Kelly's lunch, pick up the house and read a bit. So, me first. Oh, I need to go to the grocery store, shoot, it's 10:30. Darn it. See, ok, maybe after the store I'll do all this. YIkes.

same story different day

2006-05-24T18:03:00.000-07:00

Boy I bet you all are tired of reading this stuff. Let's see. I've been depressed since Saturday. There is really no reason, just am. I get up in the middle of the night and cry, no reason, just do.
I try to keep myself busy during the day so I don't notice being alone and so I'll be tired at night. But I have been having terrible insomnia again. I go to sleep very late and then after only a couple of hours I wake up. I'm so tired but can't go back to sleep. It is so frustrating.
Right now I have more time alone and I have lots to do. Much housework or closet cleaning that really needs to be done. I want to work on the guest room. I have a bunch of weeds to pull. The list of chores is endless but I don't want to do them. I can work on my bag, I really want to finish it but I don't. I can knit and watch TV but I'm sick of that. I can go to the mall and spend my gift certificates, but it's so hard carrying 02. It makes my back just ache. I can go Orchard and buy yard stuff, but I don't want to. I don't know what I want to do.

Last night I took my friend that is in the hospital a goodie bag. I hoped it would just give her a little smile and something to do. She is in the hospital with CF, pulmonary hypertension and waiting for a transplant. She is #1 on the list at USC. She is my age and just got married in March. She workes on an adult CF newsletter, is so sweet. I just wanted to do something nice. I brought a book to read, crossword puzzle book, a drawing pad and colored pencils, a coloring book and crayons (in case she is artistically challenged like me) a little cross stitch a bag of candy and a beany baby and a game of Uno. I figured if she didn't want to eat the candy she could use it to bribe the nurses! When I got to USC, she and her brand new husband were sitting outside on a bench. So I gave her the bag and we talked for a while. She didn't once look in the bag and when I left she and her husband weren't looking in it still. I hope she isn't mad that I did that, or worried about germs. I think others are much more cautious than I am. I don't think I would have left germs behind. Was I being stupid? I hope I didn't do something wrong. She seemed a little embarrassed that I was there. Maybe she and her husband were discussing "things" and I interrupted. Anyway, maybe it's just my frame of mind right now too. Who knows.

I had lunch with my other friend who is also sick, not with CF though. He is moving next month and I am so worried about him. I hope he gets the proper medical care and insists on treatment right away. I don't see him much here now, but I will miss him.

Tonite I'm running a temp again. 100.6. I've only been off of IV"s since April 27. I hope it is just a one day thing. It is hot out.

So, I've been wanting to write, but feel like I have to write something deep or exciting because people read this. But I guess it is for me, not for others. Kelly reminded me of that. So if no one wants to read because of the same old boring story over and over, I totally understand!!
I get tired of me but don't seem to be able to get a handle on it. I want to plant flowers and make my yard look great. I don't think I should be in the dirt that much, especially if I'm going to run a fever. I want to feel like doing all kinds of things, but I don't. More bills have come up that are not being paid, for my first surgery in Feb. One for $1200 and one for $4836. The insurance says they have not been sent the proper information. Does that story sound familiar? But this time it is the insurance telling me, not the SHPS that supposedly makes the decisions. So who's making the decision on this one? It'll get settled I'm sure. I was bleeding like a stuck pig for goodness sake. Ok, I guess I'll quit. I just feel like this is my only connection to anyone right now. I surely can't call and whine all the time! Well, back to TV.

2006-05-19T15:27:00.000-07:00

Well, the good news is that the $38,000 bill was approved so we won't have to fight that any more. The bad news is that the company that sends my home IV's called and said my insurance says I've been cancelled since 2003. This is the same company that says I owe them $4400. Are they now going to tell me they haven't been paid since 2003? I ask about the letter I sent them regarding that bill and of course the person I needed to talk to can't come to the phone. How interesting!

One step forward, two back.
Deep sigh....

owie!!!

2006-05-16T22:26:00.000-07:00

This could have been a really great blog. It could have been full of drama and crisis. It could have been a really great story. You see, I woke up Monday morning in so much pain I couldn't sit up. Or let me rephrase that, I didn't try. I was sleepy. It was dark out and I hurt so bad in my left lower rib cage area. No matter how I tried to lay it hurt. But you know me, I went back to sleep any way. When I woke up later it still hurt, a lot. I took a hot shower, it didn't help. I took ibuproen and bextra (yes I'll now have a stroke). It didn't help. So finally I gave in and called the doc's because I didn't know if it was my lung or my muscle.
Well, they never called me back. I went out with Kelly Monday night and as long as I sat very still and didn't say much, it didn't hurt.

Well, Tuesday morning it still hurt, a lot. The doctors office called about 11. They said to come in and have an x-ray. It could be a pneumothorax (collapsed lung) or a cracked rib (never thought of that) or a muscle.

So I drove out and got Kelly from work so he could help me walk from the doctors office to the x-ray building and back. It took forever since I didn't have an appt. But it could have gone something like this. Oh no, get to ER now. You have a pneumothroax, you need a chest tube now. So they cut a spot between my ribs and shoved the tube in. It hurt more than all 12 children I had....

Oh, that didn't happen. But it could have been like this. You have 3, no 4, no FIVE cracked ribs. Are you sure you coughed that hard or did you have a fight with someone? No? Then your osteoporosis is so bad we are going to put you on strenous weight lifting soon as your ribs heal but for 5, no 6 months you can't do anything that could cause the ribs to further break and puncture a lung.....

Ok, that didn't happen either. How about, we can't see anything wrong with your lungs or any cracks on your ribs. You probably sprained, yes sprained a muscle while coughing in your sleep. I say,"I don't cough in my sleep." My husband is behind me betraying me with a shaking head, "yes you do." So take something for pain and go home. I got a perscription for a pain killer, that isn't working by the way and went home. All this took from 12 when I left the house to 6:30 returning home. I'm whoooped. Yes, that really did happen.

See, weren't the other stories better? Not very fun to happen, but more fun to write about! And I was finally going to get my hair done today. ERrr. So the pain patch they gave me is helping a little with the strong stabbing pain, but is not helping with the constant pain. And since I know I'm holding my self weirdly because my back hurts, now my back on the other side is hurting. I give up! I think they should have given me a muscle relaxer. That would probably help more.
Oh well, didn't think of that while I was there. Just felt stupid for even going in. The doctor was very nice and assured me I did the right thing because on the phone we couldn't tell what it was.
Ok, so I'm only a half of a goober. Think I'll have to pay the guy who lugged my 02 around for me all day and missed half a day of work?

No more funk

2006-05-11T21:10:00.000-07:00

Well, not much has changed but my mood. I'm in the drug study, yahoo. No problems.
So that's a very good thing. I even get paid a little bit.
hmmmm, la la la, thinking, thinking,
not much else to say I guess. Talked to my cousin Kim, Oregon Kim as opposed to cousin Kim that is Washington Kim, for a while, that was nice. Get to sleep in tomorrow...um, yeppers, so,
um,...ok.
Guess that's it. I'm either brain dead or boring! I think boring!
Bye bye

In a funk

2006-05-10T22:39:00.000-07:00

So, nothing much is going on but I'm in a funk today. I went to lunch and a movie with my cousin Kitty and a friend Darcie. We had a nice time. I got birthday presents too!! I love presents! I did some knitting...I changed yarn and am actually doing it now! Cool. But somehow I'm in a funk. I think I'm getting ready for tomorrow. Back to phone calls for the insurance. I've been on the phone for literally hours this week and so far the virdict is, one hand doesn't know what the other hand is doing and so they have decided that I didn't qualify to be in the hospital. Even though 3 of the 5 days were approved, they do only one blanket statement and if any is denied, it is all denied and there is no "clinical" findings that I should have been in the hospital after day 3. Hmmmm, guess not being able to walk across the room doesn't count. Anyway, the person I've spent hours with finally told me she isn't really the case manager anyway and to call someone else. So I get to start over.

I also sent a letter to the comopany wanting $4400 on April 11 and have not heard from them so I need to call them.

Also need to pick out our new insurance, that's such a fun guessing game.

Let's see, I need to call the collections office and see how they are, and I have an appt. at the doctors office tomorrow to see if they'll let me back in on the drug study. I sure hope so. I believe that the drug was helping me. But there is some issue with the fact that I had to use 02 after both surgeries and that may disqualify me. Amazing that people who really need the drug are disqualified becasue they really need it. I understand they have to follow protocal to get drug approval some day, but geez.

And I think most of all, I'm worried about next week. There seems to be a correlation between my lungs and arteries bleeding when it's my cycle. It has happened 3 months in a row we found out. It may have something to do with hormones. So starting Sunday, I'll have to be very careful again to not do anything that can set it off such as lifting, or bending over or moving too fast, or smelling chemicals or....who knows! I just hate the bleeding, yea both kinds, tee hee! But the lungs is just too scary.

Anyway, nothing really is new, just the same ole junk. Some days just bothers me more than others. For some reason today is that day.

For all you cousins out there, I'll be more chipper by cousin lunch, though I may just sit and not move. I'm not supposed to go out next week! I may fianlly get to those movies that Merle gave me to watch.

Oh, my sister came over again this week and we did more on my bag. I'm almost done. It's not bad, but funny with my crooked seams. A born seamstress I am not! But it's fun. She took me out to Red Lobster for my b-day dinner. Ymmmm. Love those 240 calorie biscuts!
Ok that's really all now. Talk to you later!

Thought provoking

2006-05-05T21:39:00.000-07:00

I have been reading the book The Anatomy of Hope by Jerome Groopman, MD. It was sent to me by my cousin Kim in Washington. I really thought it was not for me, not about me and wouldn't help me. As I read along, it was very interesting if for no other reason than I like reading about people's stories. I'm a person who likes to listen, to watch and to read about other people.
So as I'm reading all I keep thinking to myself is, the stories are great but they don't pertain to me. This book about how the doctor learned about hope and how it effects treatment is all about cancer patients. It is about people who have a disease that is possibly curable, however remote that possibility is, there is a chance of a cure or at least remission. So of course these people have room for hope.

My disease has no cure. Not that the chance is remote, it is not there. Nothing is revesible, nothing will get better. The ravages done to my lungs, my pancrease, my gall bladder (which is gone) cannot be changed, cannot be fixed, cannot go into remission or be cured. It is progressive and will follow it's course. Yes, some people's CF path moves slower than others, but there IS NO CURE. So what the heck can this book tell me?

I'm not quite finished with it yet, but there is something that has been going around in my mind for a couple of days now. I told Kelly about it at dinner tonite. There was one man, Dan, who had a cancer that was curable. And fairly easily so. Yes a tough round of chemo and radiation but curable. But this man knew he was going to die, refused treatment no matter what they said to him and was just prepared to die. They sent in the priest and the psychiatrist and no one could figure out what his despondancy and refusal of treatment was all about. Then by accident his wife figured it out, without even knowing she did. See, Dan was in the military and had very good military friends from long ago. One of them died from the same cancer he had. It was a horrific, painful death. The doctors told him also he could be cured. But it never happened and he died an awful death.

Now this was many years earlier and treatments had changed so much since then, they know so much more now...and in talking to him about his friend figured out what he needed to hear. That he was in control of his treatment and that he could stop it at any time. That they would not let him end up like his friend. They realized that he had in his head that he was going to be like his friend no matter what and they had to get past what he had stuck in his mind. He had identified his disease path as the same as his friend's. So they convinced him to go only one step at a time with the knowledge that at any time he could stop if he felt it was no longer something he wanted to do and he got better. They often had to remind him HE WAS NOT HIS FRIEND. He was himself. He did get better and lived some 30 years more I think.

What I took from that and had to process for a while is this. You all know I struggle with the idea of transplant. I believe I will die. Why do I believe that? Because it is what I hear over and over from the people I call my support group and friends on an on line mail group. There are about 600 members on this list and I get anywhere from 20 to 60 messages a day. Many aren't to me directly or don't pertain to me, but they are always filled with information, compassion, kindness, happiness, yes hope, sorrow, and death. These are people I say things to that I would to no others and they understand. They either have CF, or their friends, family member or children do.

But the down side is, that as a support group, we all write in when we need help, hand holding or just to vent our frustrations, fears or grief. And this grief happens many many many times about death from a transplant. Be it the person never gets out of the hospital, or goes home only to be healthy for a month and then dies, or has horrible side effects and doesn't live a full life...The list goes on. Of the people who have a transplant that goes well, I can only count on a few fingers. Or there are others but we never hear from them because they stop "needing" the list. Or they just read but don't post any more. So you at times feel inundated with all the bad things that happen from transplant.

So I've decided I need to start trying to focus on the positives instead of believing that the worst will happen to me. I'm not those people. It won't take a day, but I'll work on it. I will still read and support those that need it, as they will me. But I will ask for those who are doing well to weigh in. To let us hear from them too. I will start going to the support group at USC as the one time I went 3 months ago, it was all annoyingly upbeat people. :) I have a book about succussful transplant stories, many organs not just lung, but I've never read it. I truly put it aside because to me it was so much bull.....

Like Dan, I have identified with the people or person who died. The agony that person was in and I have given up all hope that it can be different for me. I will try to recover that hope.
Now again, Dan had it a bit easier...he had a cure. CF can't be cured and when it's time for a transplant that won't be a cure either. It's hard work and may not work at all. But there's a chance.
A chance to live. I will fight tooth and nail to get healthier so I can put this off as long as I can, you know gives me a longer time to make this transition :) But I will be healthy then also for the surgery as that too can save your life.

So, hope this wasn't too long and rambly. Just something I have to work on. I don't know if I've written it well enough, but I hope this makes sense to someone!

Insurance strikes again

2006-05-05T21:31:00.000-07:00

Wow, I was still in a good mood. I am making this my birthday weekend instead of just my birthday on Sunday. I went to have a facial today that I've been wanting to do for some time. My freind Michelle got me a gift certificate for xmas but I haven't been able to use it till now.
So I did that, then went out with Kelly to walk around the mall, took his truck into the shop, went out to eat. Then when we got home I had the mail to open and I got 4 birthday cards. Yahoo.
Then I stupidly opened the envelope from BlueCross/Blue Shield. It was to inform me that the information they were provided has shown no justification for me being in the hospital and that they won't pay the bill. They did pay the $85 portion for education...but have denied the part for the hospitalization. It says I may owe provider a mere $38,000 and some odd dollars. Again, I am so very tired of this. Still haven't gotten the correct test strips, still have one bill in collections, one that is on the way there and one that we haven't answered the phone call for yet.
And, the statement doesn't even have the correct dates on it. How hard is it to get your insurance to do what they are supposed to do? I give up. I told Kelly he needs to divorce me, put the house and the cars in his name only, I'll use only medicare and then just not pay anything and they can't ruin his credit. Think it'll work?

.....feeling groovy

2006-04-30T23:05:00.000-07:00

da da du la da da da da, feeling groovy...
Thought I'd write quickly while the mood is here, cuz I'm sure when I'm calling 02 companies and insurance companies and pharmacies tomorrow I won't be singing.
Today was such a great day. Absolutely nothing happened. Nothing. No crisis, no problems, no pain, no gasping, not even wearing any 02. My nose thanks me.
I have nothing to say, no complaints to make. I even nagged and bugged Kelly all day. He said he could tell I was feeling better. I claimed I was spunky.
So there. That's my story and I'm stickin to it!
xxoo

Test strip fiasco

2006-04-28T23:17:00.000-07:00

Hi,
I am just wanting to vent here. I am so frustrated I am about to pop a gasket! Now I'm sure that statement shows my age!
In Nov of last year, I was sent a brochure by my prescription company. It was of 4 new glucometers. I was to pick one and get it for free. Because we all know how important testing is.
So i did. It arrived, no problems. In January, I went to my primary to get a prescription for the new lancets and test strips. My insurance insists we use the 3 month mail away program. I've had several problems, but little did I know what was to come. I got my lancets in the mail along with a letter saying they couldn't fill the test strips. Now these prescriptions were written on one piece of paper. They sent it back to me with a letter saying they no longer filled prescriptions for diabetic supplies, as per my husbands employer. What, isn't a lancet a diabetic supply? And my insurance changes on July 1st, not in January, so there had been no changes. So mid January, I call a few times and get the same answers. Some times if you call enough, you'll get someone intelligent. Nope, not this time. So I called my husbands HR person. Who then takes till APRIL. to get it fixed. I can't tell you how many times I repeated the story to her, over and over and she'd come back with some lame answer that had nothing to do with my problem and we'd start again. Funny when I ask who her supervisor was she got it taken care of. So my primary doctor calls and tells me the insurance called to find out what kind of test strips. He says to call the front desk and tell them if what he said on my machine was correct, so he could call the insurance. I called, talked to someone, said yes the doctor has the correct type and told her again just for good measure.
Today the bag filled with 3 months of test strips, to be used at a rate of 4 a day, came. IT HAS THE WRONG KIND!!!!
I'm so very very mad.I guess I have to find out what the doctors office told them and go from there. Do you think I have any test strips left. Uh, no. Actually I have some for the old machine. But this is just absolutely ludicrous.
I'm trying to fiugre out who to yell at first. And this came one day after getting off of IV's that I've been on for a month and then running a temp all day, up to 101.3.
Can you say AHHHHHHHHHH.
Ok, all better for a while.

Take care everyone.
Oh, I got someone to clean the house since I've been struggling so much and guess what? THey broke the radio in my bathroom, tried to hide it and didn't do the front room.
Can you say ERRRR.
Think I'll take some benedryl so I can sleep!

thinking and a dinner

2006-04-25T21:02:00.000-07:00

What is most on my mind is transplant. Should I have one, should I not have one, when is too soon, when is too late. This is the most difficult question I have ever had to grapple with. If I continue to lose ground like now it will come sooner rather than later. If I keep bleeding and the surgeries don't help me, it will be sooner rather than later. But when is that? While I was in the hospital I spoke with one of my doc's and he said with my PFT's the life expectancy is 3 to 5 years. With a transplant, the life expectancy is 3 to 5 years. So at this point, why would I trade my 3 to 5 with everything a "known" entity for 3 to 5 "unknown" possibly deadly years? But if I wait too long and am too weak to have the transplant, I have signed my own death warrant. I could go back and forth for days.

The doctor told me of one patient who is quite a bit worse off than I am. He has been living for 10 years with numbers less than mine. Then the doctor made a comment, "thank goodness he didn't have a transplant." Implying that he wouldn't have been alive as long. How do I internalize that information and make it my own? That I should wait at all costs? That transplant is too risky? Or will I be one of the ones that waits too long and doesn't make it off the table or only lives a few months? I've known so very many of those people. More than I can count.

The bottom line is I don't want to ever, ever, ever have a transplant. I am absolutely positive it will kill me. Don't ask me why I feel this way, I just do. When I had the embolizations I had no hesitation, no fear, I knew all would be well with me. Now an embolization is no way near as difficult as a transplant, but there are some really bad side effects like stroke or paralysis . But I knew that would not happen to me. Again, don't ask why, but I just knew.

But the fact is, I will have a transplant. I'm not sure when but I will. I'm not ready to die. If I continue to get worse or continue to bleed I will. I will soon be starting to make the appts. to have consultations to get the transplant doctors advice. I guess I need to get scored, so I know how I fair. ( The allocation for transplant goes by a score, the person with the highest score is the worst off and receives lungs first if they fit the person.) Sometimes what the doctors think is really a slap on the face and I don't realize how bad I am. When I have to fill out forms and it says how is your general health, I always hesitate, I don't know whether to put fair or sick? I feel fine most of the time. I don't hurt, I don't gasp for breath, ok, unless I'm trying to walk and talk. But I think I'm fine. Hmmm.

So for all those that have asked, I will have a transplant. I have to somehow get my head to believe it won't kill me. I don't know how to get there. I want things to just stay how they are. Not how I feel today exactly, but how I was before all this bleeding junk and pneumonia. I was just fine. If I can get healthy again, I would love to be the person who has waited 10 years and thank goodness she didn't have a transplant. But who knows. If there is anyone with some wise advice, I'll take it!

On a little up beat, thank you to my friend Cheryl who made us a pot roast dinner yesterday. It is so good. I had it last night and tonite! I want to know where he gets the meat. Mine is never so tender! Thank you from the bottom of my heart!

Ok, that's all. Off to do more thinking. My head hurts.

Part II, The good news or the Bad news

2006-04-22T19:49:00.000-07:00

Ok, if you haven't read the good news, do that first. It's a much better read!

So while all that good stuff was going on....as I said, I really was feeling so much better. On Tuesday night Sharyn and I decided to go to Target. I wanted to check out the clearance Easter candy and Sharyn needed a pair of shorts. She packed warmish clothes and it got pretty darn hot this week. So off we went for a very quick shopping trip. And boy was it short. We no more walked in the store than I could feel that weird sensation, but I couldn't tell for sure if it was just crud moving around because I was walking or if I was bleeding. I went to the bathroom and I started bleeding in a big way. All of the stalls were full so I had to just grab paper towels and was coughing up blood in them..towel after towel. I was so mad, I had to squat down on the floor the coughing is so harsh and it hurts me so much, in my stomach still, not my chest. I was so mad because I finally felt almost like myself again, and there I go again bleeding. My surgery was exactly 3 weeks ago from the Target event. I was also so mad becasue there were these two women standing in the bathroom waiting for their 5 children, who took up all the stalls, and they just stood there staring at me. No one ask if I was ok, no one tried to get their kid out so I could have a stall and they saw me trying the doors so they knew I wanted in. By the time a couple of kids came out, I was coughing too much to move around, so then kids then stood there and stared at me too.
It's so humiliating as well as angering. Don't know if that is good grammar, but I was pissed.

I finally left, the women and kids were still in the bathroom and I wanted to get out even though I was still bleeding a little. Luckily Sharyn was in the isle a ways up and saw me so I waved her down and we left immediately. Of course the bleeding stopped but I just cried. I'm so tired of this.
Later that night at midnight, I had another very small bleed.

Wed. The 19th was my doctor appt. My doc was not happy that I didn't call or go to emergency on Tuesday. But I didn't want to. She wanted me to have surgery again right away, but I said no. I really want to wait and try to get healthy again, at least a little bit, before I have surgery again. I wonder if I wouldn't be having such a hard time if I hadn't had the last surgery when I was already sick. So she said ok, but she'd call the surgeons so if I came in to ER they would be up to date on what is going on and be ready for me. I also had to promise her I'd call if I had any more bleeds. She told my aunt that I always tell her stories, but never call when things are happening. So I promised to call but assured her I was not going to bleed any more!

On the way home from the hospital we picked up Kelly to have lunch so Sharyn could see where he worked. After that we were supposed to go to the cousin lunch so we could have krispy kream cake I had been raving to my aunt about. (Cousin Carrie makes it....Almost as good as stale peeps, tee hee) So we get Kelly, go to a little Philly Cheesesteak place and sit down to eat and...you guessed it...bleeding again. Sharyn ran to get the key to the bathroom for me and we went in to bleed. Sounds like medievil torture!! This time a medium amount I guess. All I can say is SHIT
We went home and I just needed to sit so no wonderful cake and company. I called the doctor and left a message. She called later while I was asleep and told Kelly to tell me not to do anything. I'm basically on chair restriction. I'm having a really hard time with that, but I'm tired so it's not completely hard. And that's the scoop. Just waiting. Not much else I can do.

My aunt left Friday afternoon. It was so quiet when she left I didn't know what to do. I got used to her and the dogs really quickly. Hi Sharyn!! Miss you.

Today was the Cystic Fibrosis Family Education Day at the hospital where I go. I was asked to be on the adult panel and you all know how I love to talk so I said ok. I did it last year and it was really fun. But we got there and I just didn't feel good. We only stayed about an hour and I told Kelly I wanted to leave. I talked to the doctor and he checked my pulse, my color, blah blah blah and said I seemed fine. Sorry, I feel like I'm gonna pass out. So we left. I came home and slept for 4 hours. Maybe I was just too tired, and was running a temp again.

If anyone knows of a magic spell to make me feel more energetic and alive, let me know. Voodoo anyone? Rain dance? Hmmmm

Guess I'll go take another nap. Told you you should have read the good day!

The good news or the bad news?

2006-04-21T18:48:00.000-07:00

Hi, I haven't posted for a while, so there is a lot to say. I figured I could do two entries. The first one will be the good news, and there is actually quite a bit of it. Let's see, Easter weekend, that is a good place to start. On Saturday my sister came and got me and we went to eat, I finally got my nails done thank goodness, Lynn had a pedicure, then we went back home to do IV's. Then we went to the fabric store and got some stuff to make me a large bag to carry all my junk in. It was kinda late by then, oh, we went to a Rite aid too and Lynn got me vitamins and stuff, so we ran out of time and didn't get the bag made, but some other day. I move slow, takes a chunk out of the day. For the most part I did ok. Lot's of coughing, but I made it.

Easter, Lynn and Denny came over. They brought ham and rolls and yummy strawberry cheesecake over. We had smushed potatoes and veggies too. I think I ate enough for 3 people. I always eat an 8pm snack and a midnight snack: not on that day. Sharyn got here about 5:30 and ate a little, but I think she was just sick of driving!

Sharyn had her little doggies with her, so they stayed out in the back yard and slept in the car. They seemed ok with it. They would cry occasionally, they didn't understand why they were left outside all alone! One cat just stayed in the bedroom and stuck her nose in the air. The other had to come out and growl just to make sure they knew whose house it was! No major conflicts. The dogs were so cute, Kelly had fun playing with them and I talked to them too. On Thursday evening I was sitting outside with the dogs and one went to sleep on my lap and the other was playing with me. They're so cute!

The week went by and I began to feel better. By Tuesday I was feeling so much better. I am not needing 02 all the time, am not feeling like I need to sleep all the time, though I am sleeping a lot at night. But I'm sleeping without waking up for many hours, it's so cool. My aunt cleaned the entire house, changed sheets, did laundry, even pulled clover while she was out with the dogs. She did more before I crawled out of bed than I do all day. I would say "ah, youth" but she's not younger than me. Ah, healthy people! She called and we got some interviews for house cleaners set up, had one already. So things are getting done and that is such a relief.
We at least got to go out to eat a couple of times. Poor Sharyn, I get up so late then want to go eat around 3. So she'd go with me, then we'd need dinner for Kelly around 5:30. Of course I can eat again, but I think I over loaded Sharyn with food a couple of days! We drove around and found her old apartment in a little part of Upland that I didn't even know existed and her first apt was still there. But other than that I did a lot of sitting.

Sharyn left today. She wanted to stay another day, but I really wanted her to have a day at home before she had to go back to work. She really worked a lot here, stayed up late and got up early.
If you read this Sharyn, thank you so very much.I don't think I can ever say how much I appreciate it.

Tonite Kelly and I went to eat, so much for home cooked, Sharyn where are you?..and are just going to sit tonite. I'm going to a CF family education day tomorrow. I'm speaking on the adult panel. Not really speaking, just answering any questions that are asked. I'm not going to stay for the whole day...I'm supposed to be at home so I'll keep it short. Hopefully my doc, who will be there, won't get mad at me!

So, it's been a pretty good week. I am feeling better and hope to get even better. But for the little glitch...stay tuned for part 2 of The good news or the bad news?

Oh and by the way...my number one fan is the best fan in the whole wide world. I don't think I could exist without him!!!! Love you honey

a good blog, see I knew it could happen

2006-04-14T19:54:00.000-07:00

Well, well well. I told you I'd have a good blog to write some day and here it is already.
I broke down today and ask my aunt who lives in Oregon if she could come down to stay for a bit and help me. She had offered a few weeks ago but of course I said no, I didn't need any help. But knowing what Kelly is going thru and knowing I just can't keep up my end of the deal right now I ask her for help. Ok, really Kelly made me promise I'd ask. I didn't want to. It makes me cry to think I have to have help with things as small as house work and preparing food and getting to doc appts. But she quickly said yes and is leaving tomorrow morning. She is driving down so she can drop her puppies off at a friends house in No. Ca. I know she is not used to huge traffic, I hope she'll be ok. I am so grateful, I cried again. Been doing a lot of that lately.

Then my sister called. She is going to come over tomorrow and help me even if all I have energy for is getting some food and walking. You know you have to walk me like a dog now. But she's going to bring her sewing machine and teach me (or kill me cuz I'm a dummie) to make a quilted bag. She was going to teach me to make a quilt but I really need a bag cuz I have to carry so much stuff around all the time and I don't have enough hands. So if I have energy after lunch and a walk and finally getting my nails done, we'll work on the bag. We can get the guest room clean too for Sharyn.

I got in trouble cuz I don't ask for help. I told her I know she's too busy, she has a job, a house, two horses.. but she said for me she'd find the time. For me! Ok, cry again.
Even now. And then later Lynn, (my sister) called again. I had told her not to plan Easter, I'm too tired to go anywhere. She and Denny called from the grocery store and said they would bring Easter to us. So we'll have yummy food! I hope she gets jelly beans or marshmallow eggs, my favorites, peeps, circus peanut bunnys, white chocolate bunnies...wow, I've missed all that being sick. I usually buy Easter candy for weeks before Easter!

So there it is. The cavalry has arrived and probably would have sooner if I wasn't so stubborn. But like I said, I don't have much left to base my life on so I want to be able to do everything here. I guess I'll be dropping my class again...I'll never get past sign II. What's kinda scary now, I feel better tonite than I have in a while. Not "all better" but not so sick. Maybe the relief of knowing that I'm getting help. By the time my aunt comes or my sister, they're going to wonder what all the fuss was about, and smack me! But that's ok.
So, off to do another breathing treatment. Maybe the vest? ick.

Smiles

2006-04-14T00:32:00.000-07:00

Well I'm still home. Did I say I got released from the hospital on Monday? The doc discharged me from the hospital even after the other doc said I was staying. It's hard to know who is right. I had an appointment at clinic today. I was feeling really, really badly. I was in the room shivering under a blanket. I kept telling them that I was freezing and that I didn't know if had a fever or if it was just cold in the room. They said it was just cold and never checked my temp. That's not true. They did when I first got there (45 minutes prior)and I had been drinking a soda. It was 97.5. Isn't that a clue it's not quite accurate. Anyway, I told them I felt awful and all that ails me and they didn't even check out anything. The doc did say, do I want to go back in the hospital, but the way he said it was like he was laughing at me. So here I am home. After the doctor I had to go drop off a couple of checks, and I really didn't think I'd make it. I couldn't breathe, felt like I was going to pass out and I only had to walk maybe 20 feet. I know it was hot out, but I was cold. When I got home, my temp was 101.8. Guess it wasn't just cold in the room.

I'm feeling better tonite as far as that goes, but the stabbing pain in my lower abdomen is still there. One of the things they didn't check. People with CF get intestinal blockages...I'm lucky I've only had one in my life. I hope this isn't one, they said maybe I pulled a muscle with all the coughing I'm doing. Hmm.

Then my number one fan comes home with what he thinks is good news and knocks my socks off with heart break. He asked his boss to find a position for him where he could work from home and only go in one or two days a week. He'd give up a job he loves, the promotion he just got a few months ago and the rush of the work he does, to be home and help me. I am so sad. I hate that he should have to even think of this. He says he is burning the candle at both ends and something has to give. But we talked for a long time...I really don't want him to do this. I don't want him to give up any more for me. So we decided to give me a couple more weeks to see if I can get better and we are going to get housecleaning service. It's so hard to give up the one thing left that I do. It sounds so stupid to think I'd say no to a maid but I have nothing else left. Who am I? I want Kelly to stay at work and do what he loves. I want him not to have to worry about me so much. I want to stop feeling so bad.

At the same time I'm so overwhelmed that he'd give that all up for me. He kept telling me his priority is to take care of me and sometimes we have to do things we might not want to do. Who'd a thunk it? It made my heart hurt more than ever. I have some friends who are in these sucky relationships, they aren't happy, but they won't do anything about it. And it makes me so mad that they have 30 or 40 more years to be with these people and they don't even care when I love Kelly so much and want to be with him and our time is scarily short. Is that a word?

So it's been yet another emotional day. I'm sitting here crying now because as I reread this, it just doesn't say what I feel. I'm not a good writer, I don't know how to put things in flowery words and really make my point. But it's been so hard for the last 6 months or so and I just want it to be easy. I know, whaaaaaa. Sorry.

On a good note, I called a friend to see if her son's could do the yard work. Our lawns are out of control. Between rain, going to work, going to the hospital, Kelly hasn't had time to do it. Anyway, I left her a message. Then after about 3 hours of sitting on the couch, waiting to see if my fever would come down and just staring out the window, too tired to read, to uncomfortable to sleep, I realized that the lawn was done. And not just the lawn but the bushes and weeds too. I had no idea who did that. I felt so stupid when I had to call my friend back and tell her cancel that last message! It turns out a friend of mine told a friend of Kelly's who does yard work that ours really needed it. And he came over and did it. I guess he did it while I was at the doctors and I didn't even notice it when I came home. Now that's not feeling good! I'm not sure if it was an insult, telling someone our yard looked like scum! But it did and now it doesn't so yipee. We're not the white trash people any more!

Well I guess that's all. I know someday I'm going to have a great blog post. Something will go really good and you'll all be so surprised. I can smile and laugh, I swear it! Just you wait and see!
Happy Easter everyone, or Passover, or what ever it is you celebrate. We celebrate the Easter Bunny and all that is good and chewy!

It's me, in the club and NOT loving it

2006-04-08T20:01:00.000-07:00

Hi anyone and everyone,
Kelly brought me his lap top to use so I can have some contact with the world. It is hard to type with my claws for fingernails...got to get to the salon...for some reason they don't have them here, salon, not claws....anyway, so I get to say hi and let you know what all is going on.

Well, I'm still here in the club and doing better. I got some results back today... the xrays show pnemonia in my right lung, but by now is surely getting better. My tobra levels are too high, which can cause kidney failure or deafness, my protein levels are too low, my sats are still to low for my taste, don't want to be wearing 02 all the time, and we don't have my culture back yet but it is obvious that the drugs are working. So no trip to ICU that's a good thing. They are putting me back on lipids tonite, an extra 1000 calories a night. Can you believe that? Lot's of people live off of 1000 calories a day!

The trip here has been ok. The doctors ok, most of the nurses ok, the rooms, terrible till I got transferred last night and now the room was great and the nurse terrible. I give up. Hopefully tonite will be better, it is shift change so cross your fingers. The food, yikes. My sister came to see me today and brought me some knitting and crochet projects. If I can't figure out how to knit with them, I can at least have something to stab the staff with. Later in the day I got partially dressed so my ID and IV's wouldn't show and we snuck down to the cafeteria. I had the same stuff down there as they send to the rooms, but I swear they put more seasoning in it for the public, plus that getting it hot is a nice thing. I had a big ole chocolate milk. AHhhhh.
Thanks sis.

So now, just looking at a little mail, getting ready for my next IV at 8 I think. Then midnight, then 1 for lipids, then 4am, then back to lipids, no wonder I get no sleep.
I took off my pain patch today, I got it my first day here. So far so good, but my lower back is hurting from all the sitting. But I have to wear 02 and I don't have any for walking around, not that there's far to go anyway. So hopefully the pain was the pnemonia and it won't hurt any more.

Guess that's it. I'll maybe write tomorrow and tell you I'm all better! Whew, feel like I dodged a bullet. I'll have to tell you all how it was Mon-Wed. before Kelly brought me in. Yikes.

Back to Club Med

2006-04-05T19:05:00.000-07:00

#1Fan here for CuteCarol. She is in the hospital with pneumonia. I was taking her temp every hour this morning and watch it go up and up. Called the doctor and they said bring her in. They expect to keep her for about 2 weeks. Seems the antibiotic she has been taken is not working. Her last culture gave list of effective antibiotics to use. The problem is she is allergic to them. So if she doesn't respond in a few days she will have to go to ICU to start using the ones she is allergic to. Oh well, just another day with CF...

-#1Fan

Home again and half alive

2006-04-02T20:43:00.000-07:00

So, here I am at home. The first 4 days were he.... I'll be nice, no swearing.
Thank my lucky stars that the surgery didn't cause the kind of pain it did last time or I don't think I would have made it. The vicious cold I had, that I got from Kely who is also still sick? Well, it waited till after surgery to make it's real appearance. The first two or 3 days I was coughing so violently, that again we were afriad that I would put a hole in my lung. If I hadn't had the surgery, I probably would have bled a great amout also. I can't remember ever coughing like that. All day, all night. I took every over the counter thing I could think of. My sore throat that started the Thursday before the surgery was raging. I had sores on my tounge still.
I tried to sleep setting up, but that didn't help. After two nights of this I just cried I was so tired and could do nothing about it. Finally last night I got some sleep, better than I had so far. Still woke up numerous times, but was able to go back to sleep. My throat is still sore, and my voice is completely gone, not a little, but like bye bye voice! My throat and tounge itch like a food allery, go figure.

But with a little sleep I actually felt better. I put on makeup even. Kelly took me to MiMi's and then just drove around. I stuck my head out the window like a dog, hee heeh. I'm a goober. I am coughing up such disgusting stuff that I was sure I had pnemonia. But the fevers have been low and not for a couple of days. Still crud there...ewwwwwww. I am terrible to live with right now. I disgust myself even! I hope this all goes away soon.

Kelly stayed home from work all week, he too was afraid that what happened to my friend could happen to me. It was horrible and haunts us both. He got me cookies, KFC and I couldn't even eat it. Well, i did later. He even cleaned the bathroom for me, yahoo. I want to milk this, (you're not reading are you honey?) maybe he can clean the whole house! I'm very lucky to have someone who doesn't run for the hills, even though I'm sure some days he'd really like to!
So that is my story. More than you ever wanted to know probably. Told you on the front page CF isn't so fun!

I'll try to catch up on emails and phone calls. Obviously emails first since no one can hear me!

The story of surgery...boreing

2006-04-02T20:23:00.000-07:00

Well, it's been a long time since I've felt even remotely like being on the computer. I sure have a lot of email and phone calls to catch up with. Thanks for anyone who called wishing me well with the surgery. After a bit of confusion, it went well. When I first got to the doc's office, the one I talked to on the phone (and who wasn't there) had the nurse tell me that she wanted me to go in the hospital till I was not as sick and then have the surgery. She didn't want me at home in case I bled out basically. But I refused to go in the hospital for countless days because of a nasty cold which could take weeks to get better. I'd lose my ever loving mind! So the doctor that was in the office came in at the request of the nurse and he made a few calls and set the surgery up for that same day. Guess he thought it didn't matter if I was sick. Two doc's, one office, two very seperate opinions. Makes it confusing sometimes. Anyway, checked in around noon on the 28th and had surgery at 3.

The first time I had this surgery was very difficult thing. It lasted about 2 hours. I didn't have much in the way of drugs because they talk to you during the surgery, hold your breath, turn your head... There was no pain during the surgery, but after, oh my gosh. You can't move for several hours, and when I finally could I had to high tail it to the bathroom after like 9 hours.
I thought I was going to die. My leg hurt so much where the inserted the instrument into the femoral artery. I have never felt such pain...well, gall stones, kidney stones...ok, you get it.
Plus during the surgery I guess my sats dropped (for you non medical folks, that is when my system wasn't getting enough oxygen to my blood) and they had to put me on 02.
The leg and the 02 problems lasted for about 2 weeks. I was really scared. I use 02 to sleep or for walking long distances or when I don't feel good. But that time I couldn't even sit in a chair without panting for breath. I was honestly ready to say, ok let's do the transplant thing, I felt so bad. But it eventually resolved itself and I definately now know what my limit is for saying ok to a transplant!

This surgery was very different. It lasted 4 hours. The first shift of people kept me very drugged, which was fun. But after two hours I guess it was shift change and the new lady was not as fun as the guy. I started being in a lot of pain. I kept telling them, but they didn't really respond. They gave me versed which didn't help. Before it was fentanal? Anyway, finally 2 hours later I told them if they were going to continue, they were going to have to give me some very good drugs. They quit.

The first surgery they only embolized 3 arteries. This time they re did the arteries and the doctor said he lost track of how many veins. But he said there were many more he could have done. We hope this will do the trick and I don't have to go back. The first surgery they were amazed at how large my artery was, said they've never seen such a large artery. The CF doc said if they hadn't fixed it, soon we'd be attending my funeral. Well that was fun to know!

So, spent the night, got some good pain killers one time...more confusion, you can have them, no you can't....and went home on Wednesday afternoon.

yicky sicky

2006-03-27T16:47:00.000-08:00

Well, got in touch with the doctor today. I have to go to the office in the morning, then get admitted to the hospital for IV's and surgery. I'm so not looking forward to this.
But I"m sick of bleeding so what can ya do.
I have to be there by 10am. I may even have the surgery tomorrow.
Let the fun begin.

Newport Coast weekend

2006-03-26T19:51:00.000-08:00

My husband and I went to Newport this weekend. Not just Newport Beach but Newport Beach Coast. Who knew there was another town called that? We stayed at a beautiful condo complex that is a time share. We had to go thru the sells pitch, but the guy was really nice and didn't get too mad at us for not buying. It actually was a better price than I expected. We even thought twice about it!
We did a lot of sleeping in, I've had insomnia and Kelly has been sick, so we slept late. We walked around the Fashion Island mall, had some great food and sat for a while by the water. I could sit and listen to the ocean for hours.
Sadly, the day we left for our weekend, I started the morning having a sore throat. After Friday, I had that , a tounge full of sores, go figure, a headace and very sore legs from walking. Boy I'm really out of shape. So on Saturday after a late start we went to eat at a nice restaurant and half way thru my food, I started bleeding. It was a pretty big bout of hemoptysis, with me using up napkins, getting blood in my food, and scaring a waitress or two trying to get in the bathroom.
I didn't want to even move after that, but we had a long way to walk to get to the car. I had ask Kelly earlier in the day if he would mind if we could go home as I wasn't feeling well. We were going to do that, but not so early and not for this reason! But we went back and packed up and left. I felt so tired I could barely stay awake, but I didn't go to bed till 1ish and still couldn't fall asleep. I don't know what my problem is. I did finally get some sleep.

This morning I woke up feeling not so great. I hurt all over, throat, tounge, legs, even one part of my leg that feels like my bone is exploding. I feel tired and short of breath and today I'm running a small fever. We drove up the 395 to look at some houses my husband's friend told him about. The houses were beautiful, but the area and traffic were both terrible. So we came home and that's about it for today. Kelly went out this evening and I was going to go to sleep, but again, I can't fall asleep.

When I call the doctor tomorrow about the bleed, maybe I'll ask for some sleeping pills also.
So, so much for our romantic weekend. I'm such a bummer of a wife!
Well, maybe this not sleeping can be good, I think I have a test tomorrow in sign language so I'll study tonite.

Bye Bye!