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
Sunday, April 30, 2006
Friday, April 28, 2006
Test strip fiasco
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!
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!
Tuesday, April 25, 2006
thinking and a dinner
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.
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.
Saturday, April 22, 2006
Part II, The good news or the Bad news
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!
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!
Friday, April 21, 2006
The good news or the bad news?
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
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
Friday, April 14, 2006
a good blog, see I knew it could happen
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
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
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!
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!
Saturday, April 08, 2006
It's me, in the club and NOT loving it
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.
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.
Wednesday, April 05, 2006
Back to Club Med
#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
-#1Fan
Sunday, April 02, 2006
Home again and half alive
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!
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
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.
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.
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