philosophy of care

[Wheezie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>deeznuts</b></i>
on a side note, i get really annoyed at the fact that we often have to take more stuff to counteract the effects of others. abx and culturelle, for example. or miralax with enzymes. this cycle gets really annoying and seems to stop short of mental well-being. docs are quick to throw on more abx, supplements, and enzymes, but shudder when you ask for anti-anxieties, sedatives, or painkillers to deal with the increasing constraints on our time and the fundamental state of existence we're in.
k-</end quote></div>

I never really thought about it like this before - but it IS true that the medical community seems ever so happy to pile on miralax and revolting cans of ensure and 'why don't you do pulmozyme TWICE a day?', yet remains reluctant to offer treatment for pain management, anxiety, lack of sleep...

But that's not what you asked. I don't always do exactly what the doc tells me - it's not that I don't trust him, but sometimes his ideals just aren't realistic for my lifestyle. I try to be as compliant as I can, without being too hard on myself if I skip a neb or miss a dose of vitamins. I've also been keeping a sort of journal that details what I do each day - sounds tedious, I know, but it feels good for me to see those little check marks and monitor my progress. I secretly tell myself if I have a month of 100% compliance, I will do something nice for myself. I have yet to accomplish that goal, ha!

 

[Wheezie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>deeznuts</b></i>
on a side note, i get really annoyed at the fact that we often have to take more stuff to counteract the effects of others. abx and culturelle, for example. or miralax with enzymes. this cycle gets really annoying and seems to stop short of mental well-being. docs are quick to throw on more abx, supplements, and enzymes, but shudder when you ask for anti-anxieties, sedatives, or painkillers to deal with the increasing constraints on our time and the fundamental state of existence we're in.
k-</end quote></div>

I never really thought about it like this before - but it IS true that the medical community seems ever so happy to pile on miralax and revolting cans of ensure and 'why don't you do pulmozyme TWICE a day?', yet remains reluctant to offer treatment for pain management, anxiety, lack of sleep...

But that's not what you asked. I don't always do exactly what the doc tells me - it's not that I don't trust him, but sometimes his ideals just aren't realistic for my lifestyle. I try to be as compliant as I can, without being too hard on myself if I skip a neb or miss a dose of vitamins. I've also been keeping a sort of journal that details what I do each day - sounds tedious, I know, but it feels good for me to see those little check marks and monitor my progress. I secretly tell myself if I have a month of 100% compliance, I will do something nice for myself. I have yet to accomplish that goal, ha!

 

[Wheezie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>deeznuts</b></i>
on a side note, i get really annoyed at the fact that we often have to take more stuff to counteract the effects of others. abx and culturelle, for example. or miralax with enzymes. this cycle gets really annoying and seems to stop short of mental well-being. docs are quick to throw on more abx, supplements, and enzymes, but shudder when you ask for anti-anxieties, sedatives, or painkillers to deal with the increasing constraints on our time and the fundamental state of existence we're in.
k-</end quote></div>

I never really thought about it like this before - but it IS true that the medical community seems ever so happy to pile on miralax and revolting cans of ensure and 'why don't you do pulmozyme TWICE a day?', yet remains reluctant to offer treatment for pain management, anxiety, lack of sleep...

But that's not what you asked. I don't always do exactly what the doc tells me - it's not that I don't trust him, but sometimes his ideals just aren't realistic for my lifestyle. I try to be as compliant as I can, without being too hard on myself if I skip a neb or miss a dose of vitamins. I've also been keeping a sort of journal that details what I do each day - sounds tedious, I know, but it feels good for me to see those little check marks and monitor my progress. I secretly tell myself if I have a month of 100% compliance, I will do something nice for myself. I have yet to accomplish that goal, ha!

 

[Wheezie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>deeznuts</b></i>
on a side note, i get really annoyed at the fact that we often have to take more stuff to counteract the effects of others. abx and culturelle, for example. or miralax with enzymes. this cycle gets really annoying and seems to stop short of mental well-being. docs are quick to throw on more abx, supplements, and enzymes, but shudder when you ask for anti-anxieties, sedatives, or painkillers to deal with the increasing constraints on our time and the fundamental state of existence we're in.
k-</end quote>

I never really thought about it like this before - but it IS true that the medical community seems ever so happy to pile on miralax and revolting cans of ensure and 'why don't you do pulmozyme TWICE a day?', yet remains reluctant to offer treatment for pain management, anxiety, lack of sleep...

But that's not what you asked. I don't always do exactly what the doc tells me - it's not that I don't trust him, but sometimes his ideals just aren't realistic for my lifestyle. I try to be as compliant as I can, without being too hard on myself if I skip a neb or miss a dose of vitamins. I've also been keeping a sort of journal that details what I do each day - sounds tedious, I know, but it feels good for me to see those little check marks and monitor my progress. I secretly tell myself if I have a month of 100% compliance, I will do something nice for myself. I have yet to accomplish that goal, ha!

 

[Wheezie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>deeznuts</b></i>
<br />on a side note, i get really annoyed at the fact that we often have to take more stuff to counteract the effects of others. abx and culturelle, for example. or miralax with enzymes. this cycle gets really annoying and seems to stop short of mental well-being. docs are quick to throw on more abx, supplements, and enzymes, but shudder when you ask for anti-anxieties, sedatives, or painkillers to deal with the increasing constraints on our time and the fundamental state of existence we're in.
<br />k-</end quote>
<br />
<br />I never really thought about it like this before - but it IS true that the medical community seems ever so happy to pile on miralax and revolting cans of ensure and 'why don't you do pulmozyme TWICE a day?', yet remains reluctant to offer treatment for pain management, anxiety, lack of sleep...
<br />
<br />But that's not what you asked. I don't always do exactly what the doc tells me - it's not that I don't trust him, but sometimes his ideals just aren't realistic for my lifestyle. I try to be as compliant as I can, without being too hard on myself if I skip a neb or miss a dose of vitamins. I've also been keeping a sort of journal that details what I do each day - sounds tedious, I know, but it feels good for me to see those little check marks and monitor my progress. I secretly tell myself if I have a month of 100% compliance, I will do something nice for myself. I have yet to accomplish that goal, ha!

 

[Jane]

We were in the blindly "trust your doc" camp until the boys got really sick. Then we didn't trust them at all. Hitting bottom and <i><b>working together</b></i> to find a treatment plan really opened our eyes about how the doctors approach a medical problem. Sometimes they are exactly right other times they choose a more generic approach and sometimes they just plain guess.

Our doctors are conservative and aggressive (which we repspect and appreciate). However, they are not familiar with current trends in alternative or natural treatments. Now we listen to them, do our research* and make the decision we think is the best for our kids.

*AND let me just add, some of the best research has been done here with the members of this forum.

 

[Jane]

We were in the blindly "trust your doc" camp until the boys got really sick. Then we didn't trust them at all. Hitting bottom and <i><b>working together</b></i> to find a treatment plan really opened our eyes about how the doctors approach a medical problem. Sometimes they are exactly right other times they choose a more generic approach and sometimes they just plain guess.

Our doctors are conservative and aggressive (which we repspect and appreciate). However, they are not familiar with current trends in alternative or natural treatments. Now we listen to them, do our research* and make the decision we think is the best for our kids.

*AND let me just add, some of the best research has been done here with the members of this forum.

 

[Jane]

We were in the blindly "trust your doc" camp until the boys got really sick. Then we didn't trust them at all. Hitting bottom and <i><b>working together</b></i> to find a treatment plan really opened our eyes about how the doctors approach a medical problem. Sometimes they are exactly right other times they choose a more generic approach and sometimes they just plain guess.

Our doctors are conservative and aggressive (which we repspect and appreciate). However, they are not familiar with current trends in alternative or natural treatments. Now we listen to them, do our research* and make the decision we think is the best for our kids.

*AND let me just add, some of the best research has been done here with the members of this forum.

 

[Jane]

We were in the blindly "trust your doc" camp until the boys got really sick. Then we didn't trust them at all. Hitting bottom and <i><b>working together</b></i> to find a treatment plan really opened our eyes about how the doctors approach a medical problem. Sometimes they are exactly right other times they choose a more generic approach and sometimes they just plain guess.

Our doctors are conservative and aggressive (which we repspect and appreciate). However, they are not familiar with current trends in alternative or natural treatments. Now we listen to them, do our research* and make the decision we think is the best for our kids.

*AND let me just add, some of the best research has been done here with the members of this forum.

 

[Jane]

We were in the blindly "trust your doc" camp until the boys got really sick. Then we didn't trust them at all. Hitting bottom and <i><b>working together</b></i> to find a treatment plan really opened our eyes about how the doctors approach a medical problem. Sometimes they are exactly right other times they choose a more generic approach and sometimes they just plain guess.
<br />
<br />Our doctors are conservative and aggressive (which we repspect and appreciate). However, they are not familiar with current trends in alternative or natural treatments. Now we listen to them, do our research* and make the decision we think is the best for our kids.
<br />
<br />*AND let me just add, some of the best research has been done here with the members of this forum.

 

[ktsmom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NoExcuses</b></i>


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.

</end quote></div>

I agree. Not sure which way you think the difference in choice goes (and don't care), but I think I work harder at caring for my daughter than I would if it were me. That's why I do tons of research on everything, including all of our doc's recommendations. It is a huge responsibility. I want to be completely accountable to her that we did the absolute best job that we could when the time comes to transition her over to being responsible for her own care.

Not freaking out at what you said; just clarifying this parent's <b>philosophy of care</b> for the OP.

 

[ktsmom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NoExcuses</b></i>


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.

</end quote></div>

I agree. Not sure which way you think the difference in choice goes (and don't care), but I think I work harder at caring for my daughter than I would if it were me. That's why I do tons of research on everything, including all of our doc's recommendations. It is a huge responsibility. I want to be completely accountable to her that we did the absolute best job that we could when the time comes to transition her over to being responsible for her own care.

Not freaking out at what you said; just clarifying this parent's <b>philosophy of care</b> for the OP.

 

[ktsmom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NoExcuses</b></i>


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.

</end quote></div>

I agree. Not sure which way you think the difference in choice goes (and don't care), but I think I work harder at caring for my daughter than I would if it were me. That's why I do tons of research on everything, including all of our doc's recommendations. It is a huge responsibility. I want to be completely accountable to her that we did the absolute best job that we could when the time comes to transition her over to being responsible for her own care.

Not freaking out at what you said; just clarifying this parent's <b>philosophy of care</b> for the OP.

 

[ktsmom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NoExcuses</b></i>


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.

</end quote>

I agree. Not sure which way you think the difference in choice goes (and don't care), but I think I work harder at caring for my daughter than I would if it were me. That's why I do tons of research on everything, including all of our doc's recommendations. It is a huge responsibility. I want to be completely accountable to her that we did the absolute best job that we could when the time comes to transition her over to being responsible for her own care.

Not freaking out at what you said; just clarifying this parent's <b>philosophy of care</b> for the OP.

 

[ktsmom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NoExcuses</b></i>
<br />
<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 /></end quote>
<br />
<br />I agree. Not sure which way you think the difference in choice goes (and don't care), but I think I work harder at caring for my daughter than I would if it were me. That's why I do tons of research on everything, including all of our doc's recommendations. It is a huge responsibility. I want to be completely accountable to her that we did the absolute best job that we could when the time comes to transition her over to being responsible for her own care.
<br />
<br />Not freaking out at what you said; just clarifying this parent's <b>philosophy of care</b> for the OP.

 

[welshwitch]

i trust my doctor and listen to what he says, HOWEVER the person i trust most is me.

for example, i know my body better than anyone else....if i sense that something is not "right" or "normal" i slow down and really give myself a chance to heal.

it's a mixture of being proactive (treatments, exercise, meds, eating right, sleep) and also enjoying myself. do i slack off on getting all the tests and bone dex scans done on time? yes. would i ignore my body if i felt that something was really off? no. so it's a mixture of my own knowledge of my body and my doctor's expertise.

 

[welshwitch]

i trust my doctor and listen to what he says, HOWEVER the person i trust most is me.

for example, i know my body better than anyone else....if i sense that something is not "right" or "normal" i slow down and really give myself a chance to heal.

it's a mixture of being proactive (treatments, exercise, meds, eating right, sleep) and also enjoying myself. do i slack off on getting all the tests and bone dex scans done on time? yes. would i ignore my body if i felt that something was really off? no. so it's a mixture of my own knowledge of my body and my doctor's expertise.

 

[welshwitch]

i trust my doctor and listen to what he says, HOWEVER the person i trust most is me.

for example, i know my body better than anyone else....if i sense that something is not "right" or "normal" i slow down and really give myself a chance to heal.

it's a mixture of being proactive (treatments, exercise, meds, eating right, sleep) and also enjoying myself. do i slack off on getting all the tests and bone dex scans done on time? yes. would i ignore my body if i felt that something was really off? no. so it's a mixture of my own knowledge of my body and my doctor's expertise.

 

[welshwitch]

i trust my doctor and listen to what he says, HOWEVER the person i trust most is me.

for example, i know my body better than anyone else....if i sense that something is not "right" or "normal" i slow down and really give myself a chance to heal.

it's a mixture of being proactive (treatments, exercise, meds, eating right, sleep) and also enjoying myself. do i slack off on getting all the tests and bone dex scans done on time? yes. would i ignore my body if i felt that something was really off? no. so it's a mixture of my own knowledge of my body and my doctor's expertise.

 

[welshwitch]

i trust my doctor and listen to what he says, HOWEVER the person i trust most is me.
<br />
<br />for example, i know my body better than anyone else....if i sense that something is not "right" or "normal" i slow down and really give myself a chance to heal.
<br />
<br />it's a mixture of being proactive (treatments, exercise, meds, eating right, sleep) and also enjoying myself. do i slack off on getting all the tests and bone dex scans done on time? yes. would i ignore my body if i felt that something was really off? no. so it's a mixture of my own knowledge of my body and my doctor's expertise.