You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
I am a strong person but....
- Thread starter JustDucky
- Start date
Emily65Roses
New member
That was the most lighthearted complaining I've ever heard. You're allowed to complain in the most depressing and dark of ways if you so wish, and even then I wouldn't ask or expect an apology. Too nice, you are. If anyone around here is Oscar the Grouch, it's me, not you. And I don't have nearly as many reasons to complain as you do!! Hahaha.
Anyways. Don't feel bad for complaining. I'm sure we don't care. And I'm sorry you feel lousy. Never know what to say more than that. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Anyways. Don't feel bad for complaining. I'm sure we don't care. And I'm sorry you feel lousy. Never know what to say more than that. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Emily65Roses
New member
That was the most lighthearted complaining I've ever heard. You're allowed to complain in the most depressing and dark of ways if you so wish, and even then I wouldn't ask or expect an apology. Too nice, you are. If anyone around here is Oscar the Grouch, it's me, not you. And I don't have nearly as many reasons to complain as you do!! Hahaha.
Anyways. Don't feel bad for complaining. I'm sure we don't care. And I'm sorry you feel lousy. Never know what to say more than that. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Anyways. Don't feel bad for complaining. I'm sure we don't care. And I'm sorry you feel lousy. Never know what to say more than that. <img src="i/expressions/face-icon-small-sad.gif" border="0">
jenn- you might want to ask your docs about your CO2 level..i have been in the hospital for about 2 and half weeks now and the first week i slept almost 18 out of the day and had been this way for a couple weeks befire i came in.. after a blood gas, (type of blood test) they found that my lungs were not getting rid of the co2. so they upped my o2 and gave me some more PT and meds and have been doing so much better..so, you might be tired because of your levels..make sense?
catherine
catherine
jenn- you might want to ask your docs about your CO2 level..i have been in the hospital for about 2 and half weeks now and the first week i slept almost 18 out of the day and had been this way for a couple weeks befire i came in.. after a blood gas, (type of blood test) they found that my lungs were not getting rid of the co2. so they upped my o2 and gave me some more PT and meds and have been doing so much better..so, you might be tired because of your levels..make sense?
catherine
catherine
I am so sorry you are feeling badly and I do understand how tiring it is to do all the medicine. It is almost contradictory really, because we are supposed to be resting and sleeping while on IV's and yet we have to be constantly awakened or think about when we have to do the next medicine. You are handling it better than I ever have and so much more positively than me as well. I have to go on antibiotics now actually, but am putting it off until April although that is stupid of me. My school is not letting me go in now and still get my student teaching credit so I am just going along somehow. But when I do go in I am going to remember how positive you are and try to be like you. I am sure my doctor will appreciate it, given how much I complain<img src="i/expressions/face-icon-small-smile.gif" border="0">
I am so sorry you are feeling badly and I do understand how tiring it is to do all the medicine. It is almost contradictory really, because we are supposed to be resting and sleeping while on IV's and yet we have to be constantly awakened or think about when we have to do the next medicine. You are handling it better than I ever have and so much more positively than me as well. I have to go on antibiotics now actually, but am putting it off until April although that is stupid of me. My school is not letting me go in now and still get my student teaching credit so I am just going along somehow. But when I do go in I am going to remember how positive you are and try to be like you. I am sure my doctor will appreciate it, given how much I complain<img src="i/expressions/face-icon-small-smile.gif" border="0">
Emily, LOL...you made me laugh with your Oscar the grouch comment! Hahaha...You think I am more like Elmo then LOL!! No wait, maybe Big Bird...the back of my head looks like a rooster, kind of birdly like because I have been in bed for a bit now. Thank you for being you <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi Catherine...I had that problem about a few years back, my diaphragm is non functional so my CO2 levels were climbing, I was on BiPAP and O2 at that time. Ultimately, I really declined (Nov 2004) and was on BiPAP 24/7 without improvement so the docs decided to vent me...this was prior to my CF diagnosis, I have a rare type of muscular dystrophy and since I couldn't breathe on my own, they as well as I thought this was the best course of action.Talk about a wild coincidence...a neuro disease and then the CF diagnosis. Since the vent however, I have been doing well with oxygenation as well as my CO2 levels, when I get really sick, my O2 levels drop but the CO2 levels remain fairly stable. When I first went to a CF center, the staff looked at me like I had five heads...CF folks usually aren't living on vents but they understood once I told them about the neuro problems. I sure hope you get well and get out of that hospital soon, I am pulling for you! I know I used to feel extremely crappy if my CO2 levels were rising, I was sensitive to those changes. My docs at this time feel it is the infection that is making me feel so tired and worn out. I am just fighting all of the time, which I know all of you can identify with....it would be nice to get a vacation from this, even just for a little while. But, I just keep telling myself that this too shall pass and it will and I will feel better, I just have to be patient and let time do its thing. If I continue to feel crappy despite IV's at home, the docs will admit which I do not want, so I am thinking positively.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi Catherine...I had that problem about a few years back, my diaphragm is non functional so my CO2 levels were climbing, I was on BiPAP and O2 at that time. Ultimately, I really declined (Nov 2004) and was on BiPAP 24/7 without improvement so the docs decided to vent me...this was prior to my CF diagnosis, I have a rare type of muscular dystrophy and since I couldn't breathe on my own, they as well as I thought this was the best course of action.Talk about a wild coincidence...a neuro disease and then the CF diagnosis. Since the vent however, I have been doing well with oxygenation as well as my CO2 levels, when I get really sick, my O2 levels drop but the CO2 levels remain fairly stable. When I first went to a CF center, the staff looked at me like I had five heads...CF folks usually aren't living on vents but they understood once I told them about the neuro problems. I sure hope you get well and get out of that hospital soon, I am pulling for you! I know I used to feel extremely crappy if my CO2 levels were rising, I was sensitive to those changes. My docs at this time feel it is the infection that is making me feel so tired and worn out. I am just fighting all of the time, which I know all of you can identify with....it would be nice to get a vacation from this, even just for a little while. But, I just keep telling myself that this too shall pass and it will and I will feel better, I just have to be patient and let time do its thing. If I continue to feel crappy despite IV's at home, the docs will admit which I do not want, so I am thinking positively.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Emily, LOL...you made me laugh with your Oscar the grouch comment! Hahaha...You think I am more like Elmo then LOL!! No wait, maybe Big Bird...the back of my head looks like a rooster, kind of birdly like because I have been in bed for a bit now. Thank you for being you <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi Catherine...I had that problem about a few years back, my diaphragm is non functional so my CO2 levels were climbing, I was on BiPAP and O2 at that time. Ultimately, I really declined (Nov 2004) and was on BiPAP 24/7 without improvement so the docs decided to vent me...this was prior to my CF diagnosis, I have a rare type of muscular dystrophy and since I couldn't breathe on my own, they as well as I thought this was the best course of action.Talk about a wild coincidence...a neuro disease and then the CF diagnosis. Since the vent however, I have been doing well with oxygenation as well as my CO2 levels, when I get really sick, my O2 levels drop but the CO2 levels remain fairly stable. When I first went to a CF center, the staff looked at me like I had five heads...CF folks usually aren't living on vents but they understood once I told them about the neuro problems. I sure hope you get well and get out of that hospital soon, I am pulling for you! I know I used to feel extremely crappy if my CO2 levels were rising, I was sensitive to those changes. My docs at this time feel it is the infection that is making me feel so tired and worn out. I am just fighting all of the time, which I know all of you can identify with....it would be nice to get a vacation from this, even just for a little while. But, I just keep telling myself that this too shall pass and it will and I will feel better, I just have to be patient and let time do its thing. If I continue to feel crappy despite IV's at home, the docs will admit which I do not want, so I am thinking positively.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi Catherine...I had that problem about a few years back, my diaphragm is non functional so my CO2 levels were climbing, I was on BiPAP and O2 at that time. Ultimately, I really declined (Nov 2004) and was on BiPAP 24/7 without improvement so the docs decided to vent me...this was prior to my CF diagnosis, I have a rare type of muscular dystrophy and since I couldn't breathe on my own, they as well as I thought this was the best course of action.Talk about a wild coincidence...a neuro disease and then the CF diagnosis. Since the vent however, I have been doing well with oxygenation as well as my CO2 levels, when I get really sick, my O2 levels drop but the CO2 levels remain fairly stable. When I first went to a CF center, the staff looked at me like I had five heads...CF folks usually aren't living on vents but they understood once I told them about the neuro problems. I sure hope you get well and get out of that hospital soon, I am pulling for you! I know I used to feel extremely crappy if my CO2 levels were rising, I was sensitive to those changes. My docs at this time feel it is the infection that is making me feel so tired and worn out. I am just fighting all of the time, which I know all of you can identify with....it would be nice to get a vacation from this, even just for a little while. But, I just keep telling myself that this too shall pass and it will and I will feel better, I just have to be patient and let time do its thing. If I continue to feel crappy despite IV's at home, the docs will admit which I do not want, so I am thinking positively.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Sue, we can be a stubborn bunch huh?? I know I used to be that way...well, maybe I still have a bit of that in me still LOL! I hope you stay out of trouble until April...I am sending good thoughts to you. It is interesting how we know our bodies...especially regarding treatment. Also thank you for your kind words, I do think that attitude does help when dealing with such repetative treatments in our day to day lives. Even though I am a bit cranky now, I know that this ordeal will pass.
My doctors used to yell at me, I would be running temps coughing up things that crawled and would wait until almost a week went by before I called my doc. I would hold my phone about a foot from my ear and cringe when she called back because she would be so upset that I waited so long and you could here her very clearly from that distance!. These days, I just resign and say uncle...I found out that if I waited, I would be in a hospital rather than my home and I absolutely positively am HATING hospitals! But, like I said...if I have to go I do. Besides, I think I have the respiratory therapy staff trained as far as my routine goes LOL! They take one look at my name and go "oh no" But honestly, they are a good crew and have a good sense of humor and tease me relentlessly when I am in.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
My doctors used to yell at me, I would be running temps coughing up things that crawled and would wait until almost a week went by before I called my doc. I would hold my phone about a foot from my ear and cringe when she called back because she would be so upset that I waited so long and you could here her very clearly from that distance!. These days, I just resign and say uncle...I found out that if I waited, I would be in a hospital rather than my home and I absolutely positively am HATING hospitals! But, like I said...if I have to go I do. Besides, I think I have the respiratory therapy staff trained as far as my routine goes LOL! They take one look at my name and go "oh no" But honestly, they are a good crew and have a good sense of humor and tease me relentlessly when I am in.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Sue, we can be a stubborn bunch huh?? I know I used to be that way...well, maybe I still have a bit of that in me still LOL! I hope you stay out of trouble until April...I am sending good thoughts to you. It is interesting how we know our bodies...especially regarding treatment. Also thank you for your kind words, I do think that attitude does help when dealing with such repetative treatments in our day to day lives. Even though I am a bit cranky now, I know that this ordeal will pass.
My doctors used to yell at me, I would be running temps coughing up things that crawled and would wait until almost a week went by before I called my doc. I would hold my phone about a foot from my ear and cringe when she called back because she would be so upset that I waited so long and you could here her very clearly from that distance!. These days, I just resign and say uncle...I found out that if I waited, I would be in a hospital rather than my home and I absolutely positively am HATING hospitals! But, like I said...if I have to go I do. Besides, I think I have the respiratory therapy staff trained as far as my routine goes LOL! They take one look at my name and go "oh no" But honestly, they are a good crew and have a good sense of humor and tease me relentlessly when I am in.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
My doctors used to yell at me, I would be running temps coughing up things that crawled and would wait until almost a week went by before I called my doc. I would hold my phone about a foot from my ear and cringe when she called back because she would be so upset that I waited so long and you could here her very clearly from that distance!. These days, I just resign and say uncle...I found out that if I waited, I would be in a hospital rather than my home and I absolutely positively am HATING hospitals! But, like I said...if I have to go I do. Besides, I think I have the respiratory therapy staff trained as far as my routine goes LOL! They take one look at my name and go "oh no" But honestly, they are a good crew and have a good sense of humor and tease me relentlessly when I am in.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
My doctor knows how hard it is for me to do home iv's. Even if I did nothing else around the house (which will never happen....LOL), the scheduling of the ivs at its best takes a toll. This is the main reason I prefer to be in the hospital (dont anyone come down on me about the bacterias etc) because I have learned that doing the ivs, treatments etc does no good if I am so run down from it. No the hospital isnt the best place to rest, but I have to say that I can concentrate on me & only me. But you do what you have to do......My heart goes out to you with a big hug & some "umpf" to get thru it......
My doctor knows how hard it is for me to do home iv's. Even if I did nothing else around the house (which will never happen....LOL), the scheduling of the ivs at its best takes a toll. This is the main reason I prefer to be in the hospital (dont anyone come down on me about the bacterias etc) because I have learned that doing the ivs, treatments etc does no good if I am so run down from it. No the hospital isnt the best place to rest, but I have to say that I can concentrate on me & only me. But you do what you have to do......My heart goes out to you with a big hug & some "umpf" to get thru it......
It is exhausting to be on the IV schedule.
And being responsible, upbeat, and couraeous can get old too.
I hope you have help with everything else, Jenn, so you can just do the medical thing and just do what you want to the rest of the time.
Maybe nape and watch good movies.
And a hug now and again can't hurt....
Will be keeping you in my heart,
LisaV
And being responsible, upbeat, and couraeous can get old too.
I hope you have help with everything else, Jenn, so you can just do the medical thing and just do what you want to the rest of the time.
Maybe nape and watch good movies.
And a hug now and again can't hurt....
Will be keeping you in my heart,
LisaV
It is exhausting to be on the IV schedule.
And being responsible, upbeat, and couraeous can get old too.
I hope you have help with everything else, Jenn, so you can just do the medical thing and just do what you want to the rest of the time.
Maybe nape and watch good movies.
And a hug now and again can't hurt....
Will be keeping you in my heart,
LisaV
And being responsible, upbeat, and couraeous can get old too.
I hope you have help with everything else, Jenn, so you can just do the medical thing and just do what you want to the rest of the time.
Maybe nape and watch good movies.
And a hug now and again can't hurt....
Will be keeping you in my heart,
LisaV
rebekahphillips
New member
Jen,
I just signed on this week so i don't know all the specfics of your life besides this post. Have you had any breathing troubles before your diagnosed?
I had to deal with Cf for the past 27 years. I just turned 28. It's still a struggle to deal with the hospitals but you will get the hang of it.
What has helped me is excersing on a regular basis, eating right, doing my treatments, and prayers. Of course, talking to others is a great way to deal. Everyone needs to vent or just plain talk.
Let me know if I can pray for you in any way or just to talk.
Rebekah
I just signed on this week so i don't know all the specfics of your life besides this post. Have you had any breathing troubles before your diagnosed?
I had to deal with Cf for the past 27 years. I just turned 28. It's still a struggle to deal with the hospitals but you will get the hang of it.
What has helped me is excersing on a regular basis, eating right, doing my treatments, and prayers. Of course, talking to others is a great way to deal. Everyone needs to vent or just plain talk.
Let me know if I can pray for you in any way or just to talk.
Rebekah
rebekahphillips
New member
Jen,
I just signed on this week so i don't know all the specfics of your life besides this post. Have you had any breathing troubles before your diagnosed?
I had to deal with Cf for the past 27 years. I just turned 28. It's still a struggle to deal with the hospitals but you will get the hang of it.
What has helped me is excersing on a regular basis, eating right, doing my treatments, and prayers. Of course, talking to others is a great way to deal. Everyone needs to vent or just plain talk.
Let me know if I can pray for you in any way or just to talk.
Rebekah
I just signed on this week so i don't know all the specfics of your life besides this post. Have you had any breathing troubles before your diagnosed?
I had to deal with Cf for the past 27 years. I just turned 28. It's still a struggle to deal with the hospitals but you will get the hang of it.
What has helped me is excersing on a regular basis, eating right, doing my treatments, and prayers. Of course, talking to others is a great way to deal. Everyone needs to vent or just plain talk.
Let me know if I can pray for you in any way or just to talk.
Rebekah