Frustrated, scared, alone....

mom2lillian · Feb 24, 2008

just a thought but in vivo and in vitro (meaning in dish compared to in body) are very different and what shows up on a culture doesnt always mean thats what is going on in your body. If the drug you were on was showing that it was effective but you werent feeling better then I would ask to be put on a different drug combo that you are also showing as susceptible to. For instance my studies show that Levaquin should still be effective and its NOT, every time I take that drug I end up right away sick again or I dont even make it to a bit better I end up in hospital after a few days, its like tossing a bucket of water on a burning fire. NOw since cipro only shows intermediate effectiveness via my cultures my docs alwasy try to throw Levaquin at me and I now remind them EVERY time that it doesnt work for me, maybe like 5 years from now I woudl give it another go but not any time soon, cipro DOES work for me.

Well all this to say that ask the docs to go back on IV's (pain I know) but get a different combo and see what that does for you dont just accept that they 'would have called' if you needed to change meds, they wont know that you need something different unless you share your side of things.

this is just my opinion, I may be way off, but its a thought

mom2lillian · Feb 24, 2008

just a thought but in vivo and in vitro (meaning in dish compared to in body) are very different and what shows up on a culture doesnt always mean thats what is going on in your body. If the drug you were on was showing that it was effective but you werent feeling better then I would ask to be put on a different drug combo that you are also showing as susceptible to. For instance my studies show that Levaquin should still be effective and its NOT, every time I take that drug I end up right away sick again or I dont even make it to a bit better I end up in hospital after a few days, its like tossing a bucket of water on a burning fire. NOw since cipro only shows intermediate effectiveness via my cultures my docs alwasy try to throw Levaquin at me and I now remind them EVERY time that it doesnt work for me, maybe like 5 years from now I woudl give it another go but not any time soon, cipro DOES work for me.

Well all this to say that ask the docs to go back on IV's (pain I know) but get a different combo and see what that does for you dont just accept that they 'would have called' if you needed to change meds, they wont know that you need something different unless you share your side of things.

this is just my opinion, I may be way off, but its a thought

mom2lillian · Feb 24, 2008

just a thought but in vivo and in vitro (meaning in dish compared to in body) are very different and what shows up on a culture doesnt always mean thats what is going on in your body. If the drug you were on was showing that it was effective but you werent feeling better then I would ask to be put on a different drug combo that you are also showing as susceptible to. For instance my studies show that Levaquin should still be effective and its NOT, every time I take that drug I end up right away sick again or I dont even make it to a bit better I end up in hospital after a few days, its like tossing a bucket of water on a burning fire. NOw since cipro only shows intermediate effectiveness via my cultures my docs alwasy try to throw Levaquin at me and I now remind them EVERY time that it doesnt work for me, maybe like 5 years from now I woudl give it another go but not any time soon, cipro DOES work for me.

Well all this to say that ask the docs to go back on IV's (pain I know) but get a different combo and see what that does for you dont just accept that they 'would have called' if you needed to change meds, they wont know that you need something different unless you share your side of things.

this is just my opinion, I may be way off, but its a thought

mom2lillian · Feb 24, 2008

just a thought but in vivo and in vitro (meaning in dish compared to in body) are very different and what shows up on a culture doesnt always mean thats what is going on in your body. If the drug you were on was showing that it was effective but you werent feeling better then I would ask to be put on a different drug combo that you are also showing as susceptible to. For instance my studies show that Levaquin should still be effective and its NOT, every time I take that drug I end up right away sick again or I dont even make it to a bit better I end up in hospital after a few days, its like tossing a bucket of water on a burning fire. NOw since cipro only shows intermediate effectiveness via my cultures my docs alwasy try to throw Levaquin at me and I now remind them EVERY time that it doesnt work for me, maybe like 5 years from now I woudl give it another go but not any time soon, cipro DOES work for me.

Well all this to say that ask the docs to go back on IV's (pain I know) but get a different combo and see what that does for you dont just accept that they 'would have called' if you needed to change meds, they wont know that you need something different unless you share your side of things.

this is just my opinion, I may be way off, but its a thought

mom2lillian · Feb 24, 2008

just a thought but in vivo and in vitro (meaning in dish compared to in body) are very different and what shows up on a culture doesnt always mean thats what is going on in your body. If the drug you were on was showing that it was effective but you werent feeling better then I would ask to be put on a different drug combo that you are also showing as susceptible to. For instance my studies show that Levaquin should still be effective and its NOT, every time I take that drug I end up right away sick again or I dont even make it to a bit better I end up in hospital after a few days, its like tossing a bucket of water on a burning fire. NOw since cipro only shows intermediate effectiveness via my cultures my docs alwasy try to throw Levaquin at me and I now remind them EVERY time that it doesnt work for me, maybe like 5 years from now I woudl give it another go but not any time soon, cipro DOES work for me.
 
 Well all this to say that ask the docs to go back on IV's (pain I know) but get a different combo and see what that does for you dont just accept that they 'would have called' if you needed to change meds, they wont know that you need something different unless you share your side of things.
 
 this is just my opinion, I may be way off, but its a thought

ladybug · Feb 25, 2008

Thank you all for your kind comments and suggestions. I'm glad to hear I'm not alone in this (although I knew my CF community would understand... you always do!)

I feel a bit more positive today, but still not feeling physically well so I'm still calling the doc in the morning. I will post when I find out what they decide to do.

It means so very very much that this community is so kind and thoughtful to respond to my post. You guys have no idea how much it means to me and how much it lifts me up when I log on and find I have so many responses and people letting me know I'm not alone and they've also experienced their own personal frustrations with this dreaded disease (though I wouldn't wish these frustrations on anyone).

I do know so many people in this world have it far worse than I. I've done considerably well throughout the years, though have always been extremely compliant and pro-active with regard to my treatments/therapies/exercise, so I think that is why it makes this so hard to take. I guess I just hate feeling out of control over something that, until this point, I've thought I could control by adding treatments, doing IVs, etc. I know I'm so very very blessed that I even have the means to get the treatment and therapies I have throughout the years. When I'm sick my mind often wanders to those who do not have the resources I've had and have to suffer far worse than I've had to. I mourn for those who have also fought the good fight and are no longer with us. I often wonder why I've had it so good when others don't. Even when thinking about others without CF, in third-world countries, without insurance in THIS country, etc., I am saddened and realize one doesn't have to look far to find someone who indeed has it worse.

I guess I just have been coming to grips with my own disease process and though I remind myself that others do indeed have it worse, in my bleakest moments, I am shaken to my core that no matter what I do, this disease will in fact have its own "mind" and plans for me. Just as it has its own plans for every one of us. Sometimes I guess I just have to have a selfish moment and grieve for the loss of lung function and grieve for the loss of control that I thought I possessed.

Either way, I will keep everyone posted on this recent battle I'm facing and know you are all facing your own battles. I keep you in my thoughts and prayers and know we are all fighting the good fight.

God Bless,

ladybug · Feb 25, 2008

Thank you all for your kind comments and suggestions. I'm glad to hear I'm not alone in this (although I knew my CF community would understand... you always do!)

I feel a bit more positive today, but still not feeling physically well so I'm still calling the doc in the morning. I will post when I find out what they decide to do.

It means so very very much that this community is so kind and thoughtful to respond to my post. You guys have no idea how much it means to me and how much it lifts me up when I log on and find I have so many responses and people letting me know I'm not alone and they've also experienced their own personal frustrations with this dreaded disease (though I wouldn't wish these frustrations on anyone).

I do know so many people in this world have it far worse than I. I've done considerably well throughout the years, though have always been extremely compliant and pro-active with regard to my treatments/therapies/exercise, so I think that is why it makes this so hard to take. I guess I just hate feeling out of control over something that, until this point, I've thought I could control by adding treatments, doing IVs, etc. I know I'm so very very blessed that I even have the means to get the treatment and therapies I have throughout the years. When I'm sick my mind often wanders to those who do not have the resources I've had and have to suffer far worse than I've had to. I mourn for those who have also fought the good fight and are no longer with us. I often wonder why I've had it so good when others don't. Even when thinking about others without CF, in third-world countries, without insurance in THIS country, etc., I am saddened and realize one doesn't have to look far to find someone who indeed has it worse.

I guess I just have been coming to grips with my own disease process and though I remind myself that others do indeed have it worse, in my bleakest moments, I am shaken to my core that no matter what I do, this disease will in fact have its own "mind" and plans for me. Just as it has its own plans for every one of us. Sometimes I guess I just have to have a selfish moment and grieve for the loss of lung function and grieve for the loss of control that I thought I possessed.

Either way, I will keep everyone posted on this recent battle I'm facing and know you are all facing your own battles. I keep you in my thoughts and prayers and know we are all fighting the good fight.

God Bless,

ladybug · Feb 25, 2008

Thank you all for your kind comments and suggestions. I'm glad to hear I'm not alone in this (although I knew my CF community would understand... you always do!)

I feel a bit more positive today, but still not feeling physically well so I'm still calling the doc in the morning. I will post when I find out what they decide to do.

It means so very very much that this community is so kind and thoughtful to respond to my post. You guys have no idea how much it means to me and how much it lifts me up when I log on and find I have so many responses and people letting me know I'm not alone and they've also experienced their own personal frustrations with this dreaded disease (though I wouldn't wish these frustrations on anyone).

I do know so many people in this world have it far worse than I. I've done considerably well throughout the years, though have always been extremely compliant and pro-active with regard to my treatments/therapies/exercise, so I think that is why it makes this so hard to take. I guess I just hate feeling out of control over something that, until this point, I've thought I could control by adding treatments, doing IVs, etc. I know I'm so very very blessed that I even have the means to get the treatment and therapies I have throughout the years. When I'm sick my mind often wanders to those who do not have the resources I've had and have to suffer far worse than I've had to. I mourn for those who have also fought the good fight and are no longer with us. I often wonder why I've had it so good when others don't. Even when thinking about others without CF, in third-world countries, without insurance in THIS country, etc., I am saddened and realize one doesn't have to look far to find someone who indeed has it worse.

I guess I just have been coming to grips with my own disease process and though I remind myself that others do indeed have it worse, in my bleakest moments, I am shaken to my core that no matter what I do, this disease will in fact have its own "mind" and plans for me. Just as it has its own plans for every one of us. Sometimes I guess I just have to have a selfish moment and grieve for the loss of lung function and grieve for the loss of control that I thought I possessed.

Either way, I will keep everyone posted on this recent battle I'm facing and know you are all facing your own battles. I keep you in my thoughts and prayers and know we are all fighting the good fight.

God Bless,

ladybug · Feb 25, 2008

Thank you all for your kind comments and suggestions. I'm glad to hear I'm not alone in this (although I knew my CF community would understand... you always do!)

I feel a bit more positive today, but still not feeling physically well so I'm still calling the doc in the morning. I will post when I find out what they decide to do.

It means so very very much that this community is so kind and thoughtful to respond to my post. You guys have no idea how much it means to me and how much it lifts me up when I log on and find I have so many responses and people letting me know I'm not alone and they've also experienced their own personal frustrations with this dreaded disease (though I wouldn't wish these frustrations on anyone).

I do know so many people in this world have it far worse than I. I've done considerably well throughout the years, though have always been extremely compliant and pro-active with regard to my treatments/therapies/exercise, so I think that is why it makes this so hard to take. I guess I just hate feeling out of control over something that, until this point, I've thought I could control by adding treatments, doing IVs, etc. I know I'm so very very blessed that I even have the means to get the treatment and therapies I have throughout the years. When I'm sick my mind often wanders to those who do not have the resources I've had and have to suffer far worse than I've had to. I mourn for those who have also fought the good fight and are no longer with us. I often wonder why I've had it so good when others don't. Even when thinking about others without CF, in third-world countries, without insurance in THIS country, etc., I am saddened and realize one doesn't have to look far to find someone who indeed has it worse.

I guess I just have been coming to grips with my own disease process and though I remind myself that others do indeed have it worse, in my bleakest moments, I am shaken to my core that no matter what I do, this disease will in fact have its own "mind" and plans for me. Just as it has its own plans for every one of us. Sometimes I guess I just have to have a selfish moment and grieve for the loss of lung function and grieve for the loss of control that I thought I possessed.

Either way, I will keep everyone posted on this recent battle I'm facing and know you are all facing your own battles. I keep you in my thoughts and prayers and know we are all fighting the good fight.

God Bless,

ladybug · Feb 25, 2008

Thank you all for your kind comments and suggestions. I'm glad to hear I'm not alone in this (although I knew my CF community would understand... you always do!)
 
 I feel a bit more positive today, but still not feeling physically well so I'm still calling the doc in the morning. I will post when I find out what they decide to do.
 
 It means so very very much that this community is so kind and thoughtful to respond to my post. You guys have no idea how much it means to me and how much it lifts me up when I log on and find I have so many responses and people letting me know I'm not alone and they've also experienced their own personal frustrations with this dreaded disease (though I wouldn't wish these frustrations on anyone).
 
 I do know so many people in this world have it far worse than I. I've done considerably well throughout the years, though have always been extremely compliant and pro-active with regard to my treatments/therapies/exercise, so I think that is why it makes this so hard to take. I guess I just hate feeling out of control over something that, until this point, I've thought I could control by adding treatments, doing IVs, etc. I know I'm so very very blessed that I even have the means to get the treatment and therapies I have throughout the years. When I'm sick my mind often wanders to those who do not have the resources I've had and have to suffer far worse than I've had to. I mourn for those who have also fought the good fight and are no longer with us. I often wonder why I've had it so good when others don't. Even when thinking about others without CF, in third-world countries, without insurance in THIS country, etc., I am saddened and realize one doesn't have to look far to find someone who indeed has it worse.
 
 I guess I just have been coming to grips with my own disease process and though I remind myself that others do indeed have it worse, in my bleakest moments, I am shaken to my core that no matter what I do, this disease will in fact have its own "mind" and plans for me. Just as it has its own plans for every one of us. Sometimes I guess I just have to have a selfish moment and grieve for the loss of lung function and grieve for the loss of control that I thought I possessed.
 
 Either way, I will keep everyone posted on this recent battle I'm facing and know you are all facing your own battles. I keep you in my thoughts and prayers and know we are all fighting the good fight.
 
 God Bless,

beleache · Feb 25, 2008