How much do you THINK about CF?

R

rubyroselee

New member
<span style="background-color: #ffffff; font-family: verdana,geneva; color: #333399; font-size: small;">As I was driving to work this week, I noticed that I think about CF a lot while I'm by myself.  Whether it be thinking about my CF friends who have been sick, how I'm feeling that day, how I forgot to take my enzymes this morning, how am I going to fit in my treatments tonight before I go out, how I'm going to pack my meds for my upcoming vacation, how I'm excited for VX drugs to come out, etc etc etc....obviously the list goes on and on.
<span style="background-color: #ffffff; font-family: verdana,geneva; color: #333399; font-size: small;">But then again, I'm quite a "thinker", so maybe I think too much about CF.  I would say that I think about CF several hours a day.  So when you think about it, that's a lot of time I spend thinking about CF on a given day.  What the heck would I think about if I didn't have CF....LOL <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

rubyroselee

New member
<span style="background-color: #ffffff; font-family: verdana,geneva; color: #333399; font-size: small;">As I was driving to work this week, I noticed that I think about CF a lot while I'm by myself. Whether it be thinking about my CF friends who have been sick, how I'm feeling that day,how I forgot to take myenzymes this morning, how am I going to fit in my treatments tonight before I go out, how I'm going to pack my meds for my upcoming vacation, how I'm excited for VX drugs to come out,etc etc etc....obviously the list goes on and on.
<span style="background-color: #ffffff; font-family: verdana,geneva; color: #333399; font-size: small;">Butthen again, I'm quite a "thinker", so maybe I think too much about CF. I would say that I think about CF several hours a day. So when you think about it, that's a lot of time I spend thinking about CF on a given day. What the heck would I think about if I didn't have CF....LOL <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

rubyroselee

New member
<p><span style="background-color: #ffffff; font-family: verdana,geneva; color: #333399; font-size: small;">As I was driving to work this week, I noticed that I think about CF a lot while I'm by myself. Whether it be thinking about my CF friends who have been sick, how I'm feeling that day,how I forgot to take myenzymes this morning, how am I going to fit in my treatments tonight before I go out, how I'm going to pack my meds for my upcoming vacation, how I'm excited for VX drugs to come out,etc etc etc....obviously the list goes on and on.
<p><span style="background-color: #ffffff; font-family: verdana,geneva; color: #333399; font-size: small;">Butthen again, I'm quite a "thinker", so maybe I think too much about CF. I would say that I think about CF several hours a day. So when you think about it, that's a lot of time I spend thinking about CF on a given day. What the heck would I think about if I didn't have CF....LOL <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

Mommafirst

Guest
I'm not answering, because I'm sure you are looking for the perspective of others with CF, but I just wanted to say that this is a great question and I'm curious to see how others answer. As a parent, I think about CF every single day, several times a day. But I hope that I am giving my daughter so many other things in life to focus on so that CF is just a minor part of her own thoughts. I'd like to hope she only thinks about it when doing treatments or taking pills. . . for now.
 
M

Mommafirst

Guest
I'm not answering, because I'm sure you are looking for the perspective of others with CF, but I just wanted to say that this is a great question and I'm curious to see how others answer. As a parent, I think about CF every single day, several times a day. But I hope that I am giving my daughter so many other things in life to focus on so that CF is just a minor part of her own thoughts. I'd like to hope she only thinks about it when doing treatments or taking pills. . . for now.
 
M

Mommafirst

Guest
I'm not answering, because I'm sure you are looking for the perspective of others with CF, but I just wanted to say that this is a great question and I'm curious to see how others answer. As a parent, I think about CF every single day, several times a day. But I hope that I am giving my daughter so many other things in life to focus on so that CF is just a minor part of her own thoughts. I'd like to hope she only thinks about it when doing treatments or taking pills. . . for now.
 
R

Ratatosk

Administrator
Staff member
Similar Response to Heather's as I'm a parent, so not answering the poll.  Will say I don't think of it that often -- was thinking the other day how automatic it is to sort out meds for the week without giving it much thought, preparing nebs -- more like 2nd nature and don't think of CF per say -- just that I'm in my routine.   DS doesn't ask or talk about CF much, we ask him from time to time if he has questions or concerns, he knows the routine and we're able to be fairly flexible if something comes up and still fit in his treatments. 
When things are going well, I hardly give it a thought -- it's just life, it's what we do; however, if DS isn't feeling well, feverish, complains about stomach pain, coughs --- then my mind goes into overdrive with what-ifs and I pretty much think about it non-stop, constantly.
 
R

Ratatosk

Administrator
Staff member
Similar Response to Heather's as I'm a parent, so not answering the poll. Will say I don't think of it that often -- was thinking the other day how automatic it is to sort out meds for the week without giving it much thought, preparing nebs -- more like 2nd nature and don't think of CF per say -- just that I'm in my routine. DS doesn't ask or talk about CF much, we ask him from time to time if he has questions or concerns, he knows the routine and we're able to be fairly flexible if something comes up and still fit in his treatments.
When things are going well, I hardly give it a thought -- it's just life, it's what we do; however, if DS isn't feeling well, feverish, complains about stomach pain, coughs --- then my mind goes into overdrive with what-ifs and I pretty much think about it non-stop, constantly.
 
R

Ratatosk

Administrator
Staff member
<p>Similar Response to Heather's as I'm a parent, so not answering the poll. Will say I don't think of it that often -- was thinking the other day how automatic it is to sort out meds for the week without giving it much thought, preparing nebs -- more like 2nd nature and don't think of CF per say -- just that I'm in my routine. DS doesn't ask or talk about CF much, we ask him from time to time if he has questions or concerns, he knows the routine and we're able to be fairly flexible if something comes up and still fit in his treatments.
<p>When things are going well, I hardly give it a thought -- it's just life, it's what we do; however, if DS isn't feeling well, feverish, complains about stomach pain, coughs --- then my mind goes into overdrive with what-ifs and I pretty much think about it non-stop, constantly.
 
C

chrissyd

New member
I think about it a lot.  I don't work so I spend a lot of time alone, and when I'm by myself I can sort through my feelings...and most of the time it is about CF. 
 
 
 
C

chrissyd

New member
I think about it a lot. I don't work so I spend a lot of time alone, and when I'm by myself I can sort through my feelings...and most of the time it is about CF.
 
C

chrissyd

New member
<p>I think about it a lot. I don't work so I spend a lot of time alone, and when I'm by myself I can sort through my feelings...and most of the time it is about CF.
<p>
<p>
 
T

theLostMiler

New member
Liza, thats kinda how my mind works. When you are feeling okay, and "normal" then CF is just another part of your life, like brushing your teeth and showering everyday... when it starts acting up though I really concentrate on how "different" it makes me feel from other people.
When something feels wrong or I feel bad, I kick in with those "what-ifs" so fast these days. I think that has to do with where I am at with my CF progression (sick but not quite sick enough for transplant, so my QOL is sucky, and I can't really do much, but I still am too healthy for transplant). So I think, "Is this whats going to take me down?" "How sick is too sick?", "I am 4+ hours from my CF clinic and 8+ hours from my transplant center, how will I get there?"
Also ever since I joined the online world of CF I have 2 sites I visit and then FB groups and friends that I pretty much talk to daily. I text my cf friends about how they are feeling, what they have learned works for them etc. We do also talk about a lot of things non-cf related, but of course its nice b/c they 'understand' why something happened in our life... like my friend who is in grad school wrote a freaking article that will be published, and so thats not CF related, we are jumping for joy b/c of her accomplishments regardless of CF.
I also feel like I can really relate with Leah, b/c thats how my thoughts seem to evolve. I think about what I should/could have done differently, what I should still change, if I really am this "person" who can't do much anymore b/c its my true self, or b/c CF is hindering and disabling me (thats something I deal with daily... am I really just the laziest person on earth, or do I really have no energy)
I also am not working or going to school, most of my tasks I need to do are related to CF, treatments, exercise, eating a lot, calling the insurance, calling my doctors, checking out when i need to refill prescriptions. And if they aren't cf related, now I concentrate on how cf is limiting me. I want to run around with my dog, but I cant b/c I cant breathe, I want to go to the grocery store but I have a fever and no energy. I want to paint my computer room, but the smell and the energy again.
I actually get jealous of those that say/do CF isnt what defines them but just a part of them, b/c now more than ever I feel like I am sooo defined by this disease.
Well, there is my word vomit, just finished a treatment so I'll be back on later I suppose...
 
T

theLostMiler

New member
Liza, thats kinda how my mind works. When you are feeling okay, and "normal" then CF is just another part of your life, like brushing your teeth and showering everyday... when it starts acting up though I really concentrate on how "different" it makes me feel from other people.
When something feels wrong or I feel bad, I kick in with those "what-ifs" so fast these days. I think that has to do with where I am at with my CF progression (sick but not quite sick enough for transplant, so my QOL is sucky, and I can't really do much, but I still am too healthy for transplant). So I think, "Is this whats going to take me down?" "How sick is too sick?", "I am 4+ hours from my CF clinic and 8+ hours from my transplant center, how will I get there?"
Also ever since I joined the online world of CF I have 2 sites I visit and then FB groups and friends that I pretty much talk to daily. I text my cf friends about how they are feeling, what they have learned works for them etc. We do also talk about a lot of things non-cf related, but of course its nice b/c they 'understand' why something happened in our life... like my friend who is in grad school wrote a freaking article that will be published, and so thats not CF related, we are jumping for joy b/c of her accomplishments regardless of CF.
I also feel like I can really relate with Leah, b/c thats how my thoughts seem to evolve. I think about what I should/could have done differently, what I should still change, if I really am this "person" who can't do much anymore b/c its my true self, or b/c CF is hindering and disabling me (thats something I deal with daily... am I really just the laziest person on earth, or do I really have no energy)
I also am not working or going to school, most of my tasks I need to do are related to CF, treatments, exercise, eating a lot, calling the insurance, calling my doctors, checking out when i need to refill prescriptions. And if they aren't cf related, now I concentrate on how cf is limiting me. I want to run around with my dog, but I cant b/c I cant breathe, I want to go to the grocery store but I have a fever and no energy. I want to paint my computer room, but the smell and the energy again.
I actually get jealous of those that say/do CF isnt what defines them but just a part of them, b/c now more than ever I feel like I am sooo defined by this disease.
Well, there is my word vomit, just finished a treatment so I'll be back on later I suppose...
 
T

theLostMiler

New member
<p>Liza, thats kinda how my mind works. When you are feeling okay, and "normal" then CF is just another part of your life, like brushing your teeth and showering everyday... when it starts acting up though I really concentrate on how "different" it makes me feel from other people.
<p>When something feels wrong or I feel bad, I kick in with those "what-ifs" so fast these days. I think that has to do with where I am at with my CF progression (sick but not quite sick enough for transplant, so my QOL is sucky, and I can't really do much, but I still am too healthy for transplant). So I think, "Is this whats going to take me down?" "How sick is too sick?", "I am 4+ hours from my CF clinic and 8+ hours from my transplant center, how will I get there?"
<p>Also ever since I joined the online world of CF I have 2 sites I visit and then FB groups and friends that I pretty much talk to daily. I text my cf friends about how they are feeling, what they have learned works for them etc. We do also talk about a lot of things non-cf related, but of course its nice b/c they 'understand' why something happened in our life... like my friend who is in grad school wrote a freaking article that will be published, and so thats not CF related, we are jumping for joy b/c of her accomplishments regardless of CF.
<p>I also feel like I can really relate with Leah, b/c thats how my thoughts seem to evolve. I think about what I should/could have done differently, what I should still change, if I really am this "person" who can't do much anymore b/c its my true self, or b/c CF is hindering and disabling me (thats something I deal with daily... am I really just the laziest person on earth, or do I really have no energy)
<p>I also am not working or going to school, most of my tasks I need to do are related to CF, treatments, exercise, eating a lot, calling the insurance, calling my doctors, checking out when i need to refill prescriptions. And if they aren't cf related, now I concentrate on how cf is limiting me. I want to run around with my dog, but I cant b/c I cant breathe, I want to go to the grocery store but I have a fever and no energy. I want to paint my computer room, but the smell and the energy again.
<p>I actually get jealous of those that say/do CF isnt what defines them but just a part of them, b/c now more than ever I feel like I am sooo defined by this disease.
<p><br />Well, there is my word vomit, just finished a treatment so I'll be back on later I suppose...
 
R

rubyroselee

New member
To the mom's of CF children - this poll was absolutely intended for you too! I think the parents' perspective is just as important because you do most of the thinking about CF for your child.
I also agree with you guys when you say that you think about CF more when things aren't going so well. When I'm not feeling well, I have to start to question things like - is this an exacerbation? do I need to call the doctor? do I need to be seen at clinic? etc
And to theLostMiler, I also question myself as I'm lying on the couch dozing off for a nap - am I being lazy? or does my body really need this afternoon nap?
 
R

rubyroselee

New member
To the mom's of CF children - this poll was absolutely intended for you too! I think the parents' perspective is just as important because you do most of the thinking about CF for your child.
I also agree with you guys when you say that you think about CF more when things aren't going so well. When I'm not feeling well, I have to start to question things like - is this an exacerbation? do I need to call the doctor? do I need to be seen at clinic? etc
And to theLostMiler, I also question myself as I'm lying on the couch dozing off for a nap - am I being lazy? or does my body really need this afternoon nap?
 
R

rubyroselee

New member
<p>To the mom's of CF children - this poll was absolutely intended for you too! I think the parents' perspective is just as important because you do most of the thinking about CF for your child.
<p>I also agree with you guys when you say that you think about CF more when things aren't going so well. When I'm not feeling well, I have to start to question things like - is this an exacerbation? do I need to call the doctor? do I need to be seen at clinic? etc
<p>And to theLostMiler, I also question myself as I'm lying on the couch dozing off for a nap - am I being lazy? or does my body really need this afternoon nap?
 
You must log in or register to reply here.
Top