philosophy of care

C

Chilemom

New member
I use alternative medicine to prevent, i used usual med to attack a sickness.
I trust my doc, but i ask him everything ten times, and i do my own research, and send him paper´s , and i am a really pain in t..., but at the end i do whatever he tell me to do.
I keep a special eye in my daughter nutrition, i think that this is an important key for her future, i don´t save any effort in give her the best qualities of calories...
 
C

Chilemom

New member
I use alternative medicine to prevent, i used usual med to attack a sickness.
I trust my doc, but i ask him everything ten times, and i do my own research, and send him paper´s , and i am a really pain in t..., but at the end i do whatever he tell me to do.
I keep a special eye in my daughter nutrition, i think that this is an important key for her future, i don´t save any effort in give her the best qualities of calories...
 
C

Chilemom

New member
I use alternative medicine to prevent, i used usual med to attack a sickness.
I trust my doc, but i ask him everything ten times, and i do my own research, and send him paper´s , and i am a really pain in t..., but at the end i do whatever he tell me to do.
I keep a special eye in my daughter nutrition, i think that this is an important key for her future, i don´t save any effort in give her the best qualities of calories...
 
C

Chilemom

New member
I use alternative medicine to prevent, i used usual med to attack a sickness.
I trust my doc, but i ask him everything ten times, and i do my own research, and send him paper´s , and i am a really pain in t..., but at the end i do whatever he tell me to do.
I keep a special eye in my daughter nutrition, i think that this is an important key for her future, i don´t save any effort in give her the best qualities of calories...
 
C

Chilemom

New member
I use alternative medicine to prevent, i used usual med to attack a sickness.
<br />I trust my doc, but i ask him everything ten times, and i do my own research, and send him paper´s , and i am a really pain in t..., but at the end i do whatever he tell me to do.
<br />I keep a special eye in my daughter nutrition, i think that this is an important key for her future, i don´t save any effort in give her the best qualities of calories...
<br />
 
N

NoExcuses

New member
i feel like a lot of CF parents trust their docs more inherently. part of it is just inexperience with the disease.

by the time we get into our 20s, we've seen so much, some of us have more experience with CF than our docs (how many 25 year olds see a doc who has been treating CF for 25 years? some, but i bet not all....).

i collaborate with my doc. he learns from me. i learn from him. i owe it to myself to educate myself as much as possible because at the end of the day, my doc gets to go home and hang out with his family and leave CF at work. at the end of my day, i live with the decisions he and i make and my live is extended or shortened by then.

this brings up another point i think. CF parents are making decisions for someone else. not that CF parents don't care for their kids, but i think frequently when one cares for onesself choices are different than if you're caring for soemone else. again, for those who enjoy freaking out at what i say, i'm not saying CF parents don't care. but advocating for yourself is simply different than someone else doing it for you.

so bottomline: i'm aggressive; i question everything; not sure what you consider "natural" but i do things like NAC which is an Rx everywhere else in the world but in the US; i research research research and read read read until i understand.

if i didn't understand the science, i'd take a community college class to understand it.

last thing - i think some have the luxury to not do much for their CF and still stay healthy enough to lead "normal" lives. some of us get sick right away if we're not obnoxiously agressive. so that's worth taking into account as well. if i didn't do meds, my PFT's would drop by 20-30 points.
 
N

NoExcuses

New member
i feel like a lot of CF parents trust their docs more inherently. part of it is just inexperience with the disease.

by the time we get into our 20s, we've seen so much, some of us have more experience with CF than our docs (how many 25 year olds see a doc who has been treating CF for 25 years? some, but i bet not all....).

i collaborate with my doc. he learns from me. i learn from him. i owe it to myself to educate myself as much as possible because at the end of the day, my doc gets to go home and hang out with his family and leave CF at work. at the end of my day, i live with the decisions he and i make and my live is extended or shortened by then.

this brings up another point i think. CF parents are making decisions for someone else. not that CF parents don't care for their kids, but i think frequently when one cares for onesself choices are different than if you're caring for soemone else. again, for those who enjoy freaking out at what i say, i'm not saying CF parents don't care. but advocating for yourself is simply different than someone else doing it for you.

so bottomline: i'm aggressive; i question everything; not sure what you consider "natural" but i do things like NAC which is an Rx everywhere else in the world but in the US; i research research research and read read read until i understand.

if i didn't understand the science, i'd take a community college class to understand it.

last thing - i think some have the luxury to not do much for their CF and still stay healthy enough to lead "normal" lives. some of us get sick right away if we're not obnoxiously agressive. so that's worth taking into account as well. if i didn't do meds, my PFT's would drop by 20-30 points.
 
N

NoExcuses

New member
i feel like a lot of CF parents trust their docs more inherently. part of it is just inexperience with the disease.

by the time we get into our 20s, we've seen so much, some of us have more experience with CF than our docs (how many 25 year olds see a doc who has been treating CF for 25 years? some, but i bet not all....).

i collaborate with my doc. he learns from me. i learn from him. i owe it to myself to educate myself as much as possible because at the end of the day, my doc gets to go home and hang out with his family and leave CF at work. at the end of my day, i live with the decisions he and i make and my live is extended or shortened by then.

this brings up another point i think. CF parents are making decisions for someone else. not that CF parents don't care for their kids, but i think frequently when one cares for onesself choices are different than if you're caring for soemone else. again, for those who enjoy freaking out at what i say, i'm not saying CF parents don't care. but advocating for yourself is simply different than someone else doing it for you.

so bottomline: i'm aggressive; i question everything; not sure what you consider "natural" but i do things like NAC which is an Rx everywhere else in the world but in the US; i research research research and read read read until i understand.

if i didn't understand the science, i'd take a community college class to understand it.

last thing - i think some have the luxury to not do much for their CF and still stay healthy enough to lead "normal" lives. some of us get sick right away if we're not obnoxiously agressive. so that's worth taking into account as well. if i didn't do meds, my PFT's would drop by 20-30 points.
 
N

NoExcuses

New member
i feel like a lot of CF parents trust their docs more inherently. part of it is just inexperience with the disease.

by the time we get into our 20s, we've seen so much, some of us have more experience with CF than our docs (how many 25 year olds see a doc who has been treating CF for 25 years? some, but i bet not all....).

i collaborate with my doc. he learns from me. i learn from him. i owe it to myself to educate myself as much as possible because at the end of the day, my doc gets to go home and hang out with his family and leave CF at work. at the end of my day, i live with the decisions he and i make and my live is extended or shortened by then.

this brings up another point i think. CF parents are making decisions for someone else. not that CF parents don't care for their kids, but i think frequently when one cares for onesself choices are different than if you're caring for soemone else. again, for those who enjoy freaking out at what i say, i'm not saying CF parents don't care. but advocating for yourself is simply different than someone else doing it for you.

so bottomline: i'm aggressive; i question everything; not sure what you consider "natural" but i do things like NAC which is an Rx everywhere else in the world but in the US; i research research research and read read read until i understand.

if i didn't understand the science, i'd take a community college class to understand it.

last thing - i think some have the luxury to not do much for their CF and still stay healthy enough to lead "normal" lives. some of us get sick right away if we're not obnoxiously agressive. so that's worth taking into account as well. if i didn't do meds, my PFT's would drop by 20-30 points.
 
N

NoExcuses

New member
i feel like a lot of CF parents trust their docs more inherently. part of it is just inexperience with the disease.
<br />
<br />by the time we get into our 20s, we've seen so much, some of us have more experience with CF than our docs (how many 25 year olds see a doc who has been treating CF for 25 years? some, but i bet not all....).
<br />
<br />i collaborate with my doc. he learns from me. i learn from him. i owe it to myself to educate myself as much as possible because at the end of the day, my doc gets to go home and hang out with his family and leave CF at work. at the end of my day, i live with the decisions he and i make and my live is extended or shortened by then.
<br />
<br />this brings up another point i think. CF parents are making decisions for someone else. not that CF parents don't care for their kids, but i think frequently when one cares for onesself choices are different than if you're caring for soemone else. again, for those who enjoy freaking out at what i say, i'm not saying CF parents don't care. but advocating for yourself is simply different than someone else doing it for you.
<br />
<br />so bottomline: i'm aggressive; i question everything; not sure what you consider "natural" but i do things like NAC which is an Rx everywhere else in the world but in the US; i research research research and read read read until i understand.
<br />
<br />if i didn't understand the science, i'd take a community college class to understand it.
<br />
<br />last thing - i think some have the luxury to not do much for their CF and still stay healthy enough to lead "normal" lives. some of us get sick right away if we're not obnoxiously agressive. so that's worth taking into account as well. if i didn't do meds, my PFT's would drop by 20-30 points.
<br />
 
S

Sevenstars

New member
What do you view as natural remedies? I guess I do a few things that aren't your standard doctor prescribed stuff, but that's all in addition to my normal medicines and treatments. I take garlic, use a neti pot, and take a boatload of other vitamins (actually half of them were recommended by my dr, I suppose).

I probably have a weird philosophy of my treatment and care. Yes, I want to stay alive and I fight for my health, but I almost feel like I've been given a gift (not in the relgious way) in that I've seen so many friends die, yet I'm still here. I feel like I owe it to them to do as many studies as I possibly can, so that others can benefit from new medications, and not suffer as they did. I feel kind of like a walking guinea pig, and I don't really mind that. I actually wish there were MORE studies I could help with at my CF center.

I want to get involved with fundraising too, just to feel like I'm making a difference more directly, but haven't really gotten into that yet. (I blame depression) This seems to be straying a bit from the topic but it's really the pervading thought I have when I do treatments "stay alive, help others"... I think without that I'd be even more depressed than I already am.

For my own treatments and meds, I am proactive, and I do trust my doctor, but that only comes from years of seeing lots of doctors that were not trustworthy. You kind of have to see the bad to recognise the good when it's in front of you.
 
S

Sevenstars

New member
What do you view as natural remedies? I guess I do a few things that aren't your standard doctor prescribed stuff, but that's all in addition to my normal medicines and treatments. I take garlic, use a neti pot, and take a boatload of other vitamins (actually half of them were recommended by my dr, I suppose).

I probably have a weird philosophy of my treatment and care. Yes, I want to stay alive and I fight for my health, but I almost feel like I've been given a gift (not in the relgious way) in that I've seen so many friends die, yet I'm still here. I feel like I owe it to them to do as many studies as I possibly can, so that others can benefit from new medications, and not suffer as they did. I feel kind of like a walking guinea pig, and I don't really mind that. I actually wish there were MORE studies I could help with at my CF center.

I want to get involved with fundraising too, just to feel like I'm making a difference more directly, but haven't really gotten into that yet. (I blame depression) This seems to be straying a bit from the topic but it's really the pervading thought I have when I do treatments "stay alive, help others"... I think without that I'd be even more depressed than I already am.

For my own treatments and meds, I am proactive, and I do trust my doctor, but that only comes from years of seeing lots of doctors that were not trustworthy. You kind of have to see the bad to recognise the good when it's in front of you.
 
S

Sevenstars

New member
What do you view as natural remedies? I guess I do a few things that aren't your standard doctor prescribed stuff, but that's all in addition to my normal medicines and treatments. I take garlic, use a neti pot, and take a boatload of other vitamins (actually half of them were recommended by my dr, I suppose).

I probably have a weird philosophy of my treatment and care. Yes, I want to stay alive and I fight for my health, but I almost feel like I've been given a gift (not in the relgious way) in that I've seen so many friends die, yet I'm still here. I feel like I owe it to them to do as many studies as I possibly can, so that others can benefit from new medications, and not suffer as they did. I feel kind of like a walking guinea pig, and I don't really mind that. I actually wish there were MORE studies I could help with at my CF center.

I want to get involved with fundraising too, just to feel like I'm making a difference more directly, but haven't really gotten into that yet. (I blame depression) This seems to be straying a bit from the topic but it's really the pervading thought I have when I do treatments "stay alive, help others"... I think without that I'd be even more depressed than I already am.

For my own treatments and meds, I am proactive, and I do trust my doctor, but that only comes from years of seeing lots of doctors that were not trustworthy. You kind of have to see the bad to recognise the good when it's in front of you.
 
S

Sevenstars

New member
What do you view as natural remedies? I guess I do a few things that aren't your standard doctor prescribed stuff, but that's all in addition to my normal medicines and treatments. I take garlic, use a neti pot, and take a boatload of other vitamins (actually half of them were recommended by my dr, I suppose).

I probably have a weird philosophy of my treatment and care. Yes, I want to stay alive and I fight for my health, but I almost feel like I've been given a gift (not in the relgious way) in that I've seen so many friends die, yet I'm still here. I feel like I owe it to them to do as many studies as I possibly can, so that others can benefit from new medications, and not suffer as they did. I feel kind of like a walking guinea pig, and I don't really mind that. I actually wish there were MORE studies I could help with at my CF center.

I want to get involved with fundraising too, just to feel like I'm making a difference more directly, but haven't really gotten into that yet. (I blame depression) This seems to be straying a bit from the topic but it's really the pervading thought I have when I do treatments "stay alive, help others"... I think without that I'd be even more depressed than I already am.

For my own treatments and meds, I am proactive, and I do trust my doctor, but that only comes from years of seeing lots of doctors that were not trustworthy. You kind of have to see the bad to recognise the good when it's in front of you.
 
S

Sevenstars

New member
What do you view as natural remedies? I guess I do a few things that aren't your standard doctor prescribed stuff, but that's all in addition to my normal medicines and treatments. I take garlic, use a neti pot, and take a boatload of other vitamins (actually half of them were recommended by my dr, I suppose).
<br />
<br />I probably have a weird philosophy of my treatment and care. Yes, I want to stay alive and I fight for my health, but I almost feel like I've been given a gift (not in the relgious way) in that I've seen so many friends die, yet I'm still here. I feel like I owe it to them to do as many studies as I possibly can, so that others can benefit from new medications, and not suffer as they did. I feel kind of like a walking guinea pig, and I don't really mind that. I actually wish there were MORE studies I could help with at my CF center.
<br />
<br />I want to get involved with fundraising too, just to feel like I'm making a difference more directly, but haven't really gotten into that yet. (I blame depression) This seems to be straying a bit from the topic but it's really the pervading thought I have when I do treatments "stay alive, help others"... I think without that I'd be even more depressed than I already am.
<br />
<br />For my own treatments and meds, I am proactive, and I do trust my doctor, but that only comes from years of seeing lots of doctors that were not trustworthy. You kind of have to see the bad to recognise the good when it's in front of you.
 
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