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!
Friday, June 30, 2006
Tuesday, June 27, 2006
You can call me Mrs. Director
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.
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.
Friday, June 23, 2006
A nice week
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!
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!
Sunday, June 18, 2006
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?
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?
Wednesday, June 14, 2006
Feeling better
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.
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.
Saturday, June 10, 2006
The funeral
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
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
Wednesday, June 07, 2006
6/6/6
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.
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.
Monday, June 05, 2006
catharine
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.
Sunday, June 04, 2006
Catharine
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
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
Saturday, June 03, 2006
not much blogging going on`
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
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
Saturday, May 27, 2006
So much for improving
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.
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.
Thursday, May 25, 2006
Trying to improve
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.
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.
Wednesday, May 24, 2006
same story different day
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.
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.
Friday, May 19, 2006
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....
One step forward, two back.
Deep sigh....
Tuesday, May 16, 2006
owie!!!
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?
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?
Thursday, May 11, 2006
No more funk
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
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
Wednesday, May 10, 2006
In a funk
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!
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!
Friday, May 05, 2006
Thought provoking
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!
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
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?
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?
Sunday, April 30, 2006
.....feeling groovy
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
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
Subscribe to:
Posts (Atom)
