musclemania70
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What do you mean 'the God card'?
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Need to vent
- Thread starter missT
- Start date
musclemania70
New member
<p>What do you mean 'the God card'?
W
windex125
Guest
yes what do you mean God card??? I wld be interested in hearing that one for sure... Pat-56/CF
W
windex125
Guest
yes what do you mean God card??? I wld be interested in hearing that one for sure... Pat-56/CF
W
windex125
Guest
yes what do you mean God card??? I wld be interested in hearing that one for sure... Pat-56/CF
I have been having a lot of those feelings lately! I also always feel like I shouldn't complain because I am so healthy (for a CFer). But, you know what? I am SICK.OF.IT. I am sick of breathing treatments, cleaning nebulizers, dealing with insurance, running to the pharmacy, going to the doctor, making sure I get enough sleep, etc. I am sick of feeling totally stressed out because CF takes up so much of my time that I can't keep up with the other stuff, and no one gets it. I want to be able to spend more time with friends and family. I want to be able to cook dinner every night. I want to be able to just get up in the morning and go out to breakfast or go for a run instead of having to do breathing treatments. I've been sick for three out of five months this year, and I am DONE. Yesterday I actually threw a bowl of cereal across the room because I was so frustrated.
This year has been really hard - not only have I had the CF crap, I need to go to weekly physical therapy (since October) and do daily at-home PT because I suffered some trauma during delivery, I hurt my foot and have had to go to the podiatrist every three weeks (since November) and have to do daily exercises for that, my cat got really sick and I had to take him to the vet once a week for months - and then he died <img src="i/expressions/face-icon-small-sad.gif" border="0"> - and my daughter was very colicky and now is having some developmental problems that is probably going to require physical therapy for her (she is getting evaluated this week). And then, to top it off, my husband's job suddenly has him traveling all the time. And we have no family around to help-out.
Yesterday I told my husband, "I just want a normal life for a little while." And he said, "You are never going to have a normal life."
I keep thinking about VX-770. Based on everything we've discussed about it for our genotype (R117H), I really have my hopes up that it will work for us. I know I shouldn't but I can't help it. I was even thinking the other day about how it's kind-of frustrating that there is a drug out there that might have prevented me from getting sick like I have been this year, but I can't have it (although i totally understand why the FDA approval process is necessary). And, I to have another child in a few years, but, when I think about another kid, I think "I can't, it will be too hard when I get sick." And then I think of 770 and a sense of relief washes over me. I am going to be devastated if it doesn't work for us.
Ok, so there's my vent.
This year has been really hard - not only have I had the CF crap, I need to go to weekly physical therapy (since October) and do daily at-home PT because I suffered some trauma during delivery, I hurt my foot and have had to go to the podiatrist every three weeks (since November) and have to do daily exercises for that, my cat got really sick and I had to take him to the vet once a week for months - and then he died <img src="i/expressions/face-icon-small-sad.gif" border="0"> - and my daughter was very colicky and now is having some developmental problems that is probably going to require physical therapy for her (she is getting evaluated this week). And then, to top it off, my husband's job suddenly has him traveling all the time. And we have no family around to help-out.
Yesterday I told my husband, "I just want a normal life for a little while." And he said, "You are never going to have a normal life."
I keep thinking about VX-770. Based on everything we've discussed about it for our genotype (R117H), I really have my hopes up that it will work for us. I know I shouldn't but I can't help it. I was even thinking the other day about how it's kind-of frustrating that there is a drug out there that might have prevented me from getting sick like I have been this year, but I can't have it (although i totally understand why the FDA approval process is necessary). And, I to have another child in a few years, but, when I think about another kid, I think "I can't, it will be too hard when I get sick." And then I think of 770 and a sense of relief washes over me. I am going to be devastated if it doesn't work for us.
Ok, so there's my vent.
I have been having a lot of those feelings lately! I also always feel like I shouldn't complain because I am so healthy (for a CFer). But, you know what? I am SICK.OF.IT. I am sick of breathing treatments, cleaning nebulizers, dealing with insurance, running to the pharmacy, going to the doctor, making sure I get enough sleep, etc. I am sick of feeling totally stressed out because CF takes up so much of my time that I can't keep up with the other stuff, and no one gets it. I want to be able to spend more time with friends and family. I want to be able to cook dinner every night. I want to be able to just get up in the morning and go out to breakfast or go for a run instead of having to do breathing treatments. I've been sick for three out of five months this year, and I am DONE. Yesterday I actually threw a bowl of cereal across the room because I was so frustrated.
This year has been really hard - not only have I had the CF crap, I need to go to weekly physical therapy (since October) and do daily at-home PT because I suffered some trauma during delivery, I hurt my foot and have had to go to the podiatrist every three weeks (since November) and have to do daily exercises for that, my cat got really sick and I had to take him to the vet once a week for months - and then he died <img src="i/expressions/face-icon-small-sad.gif" border="0"> - and my daughter was very colicky and now is having some developmental problems that is probably going to require physical therapy for her (she is getting evaluated this week). And then, to top it off, my husband's job suddenly has him traveling all the time. And we have no family around to help-out.
Yesterday I told my husband, "I just want a normal life for a little while." And he said, "You are never going to have a normal life."
I keep thinking about VX-770. Based on everything we've discussed about it for our genotype (R117H), I really have my hopes up that it will work for us. I know I shouldn't but I can't help it. I was even thinking the other day about how it's kind-of frustrating that there is a drug out there that might have prevented me from getting sick like I have been this year, but I can't have it (although i totally understand why the FDA approval process is necessary). And, I to have another child in a few years, but, when I think about another kid, I think "I can't, it will be too hard when I get sick." And then I think of 770 and a sense of relief washes over me. I am going to be devastated if it doesn't work for us.
Ok, so there's my vent.
This year has been really hard - not only have I had the CF crap, I need to go to weekly physical therapy (since October) and do daily at-home PT because I suffered some trauma during delivery, I hurt my foot and have had to go to the podiatrist every three weeks (since November) and have to do daily exercises for that, my cat got really sick and I had to take him to the vet once a week for months - and then he died <img src="i/expressions/face-icon-small-sad.gif" border="0"> - and my daughter was very colicky and now is having some developmental problems that is probably going to require physical therapy for her (she is getting evaluated this week). And then, to top it off, my husband's job suddenly has him traveling all the time. And we have no family around to help-out.
Yesterday I told my husband, "I just want a normal life for a little while." And he said, "You are never going to have a normal life."
I keep thinking about VX-770. Based on everything we've discussed about it for our genotype (R117H), I really have my hopes up that it will work for us. I know I shouldn't but I can't help it. I was even thinking the other day about how it's kind-of frustrating that there is a drug out there that might have prevented me from getting sick like I have been this year, but I can't have it (although i totally understand why the FDA approval process is necessary). And, I to have another child in a few years, but, when I think about another kid, I think "I can't, it will be too hard when I get sick." And then I think of 770 and a sense of relief washes over me. I am going to be devastated if it doesn't work for us.
Ok, so there's my vent.
I have been having a lot of those feelings lately! I also always feel like I shouldn't complain because I am so healthy (for a CFer). But, you know what? I am SICK.OF.IT. I am sick of breathing treatments, cleaning nebulizers, dealing with insurance, running to the pharmacy, going to the doctor, making sure I get enough sleep, etc. I am sick of feeling totally stressed out because CF takes up so much of my time that I can't keep up with the other stuff, and no one gets it. I want to be able to spend more time with friends and family. I want to be able to cook dinner every night. I want to be able to just get up in the morning and go out to breakfast or go for a run instead of having to do breathing treatments. I've been sick for three out of five months this year, and I am DONE. Yesterday I actually threw a bowl of cereal across the room because I was so frustrated.
<br />
<br />This year has been really hard - not only have I had the CF crap, I need to go to weekly physical therapy (since October) and do daily at-home PT because I suffered some trauma during delivery, I hurt my foot and have had to go to the podiatrist every three weeks (since November) and have to do daily exercises for that, my cat got really sick and I had to take him to the vet once a week for months - and then he died <img src="i/expressions/face-icon-small-sad.gif" border="0"> - and my daughter was very colicky and now is having some developmental problems that is probably going to require physical therapy for her (she is getting evaluated this week). And then, to top it off, my husband's job suddenly has him traveling all the time. And we have no family around to help-out.
<br />
<br />Yesterday I told my husband, "I just want a normal life for a little while." And he said, "You are never going to have a normal life."
<br />
<br />I keep thinking about VX-770. Based on everything we've discussed about it for our genotype (R117H), I really have my hopes up that it will work for us. I know I shouldn't but I can't help it. I was even thinking the other day about how it's kind-of frustrating that there is a drug out there that might have prevented me from getting sick like I have been this year, but I can't have it (although i totally understand why the FDA approval process is necessary). And, I to have another child in a few years, but, when I think about another kid, I think "I can't, it will be too hard when I get sick." And then I think of 770 and a sense of relief washes over me. I am going to be devastated if it doesn't work for us.
<br />
<br />Ok, so there's my vent.
<br />
<br />This year has been really hard - not only have I had the CF crap, I need to go to weekly physical therapy (since October) and do daily at-home PT because I suffered some trauma during delivery, I hurt my foot and have had to go to the podiatrist every three weeks (since November) and have to do daily exercises for that, my cat got really sick and I had to take him to the vet once a week for months - and then he died <img src="i/expressions/face-icon-small-sad.gif" border="0"> - and my daughter was very colicky and now is having some developmental problems that is probably going to require physical therapy for her (she is getting evaluated this week). And then, to top it off, my husband's job suddenly has him traveling all the time. And we have no family around to help-out.
<br />
<br />Yesterday I told my husband, "I just want a normal life for a little while." And he said, "You are never going to have a normal life."
<br />
<br />I keep thinking about VX-770. Based on everything we've discussed about it for our genotype (R117H), I really have my hopes up that it will work for us. I know I shouldn't but I can't help it. I was even thinking the other day about how it's kind-of frustrating that there is a drug out there that might have prevented me from getting sick like I have been this year, but I can't have it (although i totally understand why the FDA approval process is necessary). And, I to have another child in a few years, but, when I think about another kid, I think "I can't, it will be too hard when I get sick." And then I think of 770 and a sense of relief washes over me. I am going to be devastated if it doesn't work for us.
<br />
<br />Ok, so there's my vent.
W
windex125
Guest
someone tell me what is 770 drug is, what will it do for us? - sorry out of touch / also I guess Cerulean meant me and the God card since I was the only one that mentioned God in their post. But if you cld also get me to pull a good BM out of my ass I wld be as gratful......Pat-56/CF- MAC
W
windex125
Guest
someone tell me what is 770 drug is, what will it do for us? - sorry out of touch / also I guess Cerulean meant me and the God card since I was the only one that mentioned God in their post. But if you cld also get me to pull a good BM out of my ass I wld be as gratful......Pat-56/CF- MAC
W
windex125
Guest
someone tell me what is 770 drug is, what will it do for us? - sorry out of touch / also I guess Cerulean meant me and the God card since I was the only one that mentioned God in their post. But if you cld also get me to pull a good BM out of my ass I wld be as gratful......Pat-56/CF- MAC
theLostMiler
New member
bwhahaha Pat
theLostMiler
New member
bwhahaha Pat
theLostMiler
New member
bwhahaha Pat
coltsfan715
New member
Pat
I mentioned God as well and quite honestly don't really care what he meant by it. There are many that deal with chronic health issues that denounce a belief in any "God" and that is their prerogative. I personally have very strange beliefs at times, but none the less I have faith. I say this - if not believing helps you then fine, but don't knock the ones that do believe and have faith that helps them just because you don't feel the same.
Regardless of how we get through our bad times it is simply important that we get through them.
Lindsey
I mentioned God as well and quite honestly don't really care what he meant by it. There are many that deal with chronic health issues that denounce a belief in any "God" and that is their prerogative. I personally have very strange beliefs at times, but none the less I have faith. I say this - if not believing helps you then fine, but don't knock the ones that do believe and have faith that helps them just because you don't feel the same.
Regardless of how we get through our bad times it is simply important that we get through them.
Lindsey
coltsfan715
New member
Pat
I mentioned God as well and quite honestly don't really care what he meant by it. There are many that deal with chronic health issues that denounce a belief in any "God" and that is their prerogative. I personally have very strange beliefs at times, but none the less I have faith. I say this - if not believing helps you then fine, but don't knock the ones that do believe and have faith that helps them just because you don't feel the same.
Regardless of how we get through our bad times it is simply important that we get through them.
Lindsey
I mentioned God as well and quite honestly don't really care what he meant by it. There are many that deal with chronic health issues that denounce a belief in any "God" and that is their prerogative. I personally have very strange beliefs at times, but none the less I have faith. I say this - if not believing helps you then fine, but don't knock the ones that do believe and have faith that helps them just because you don't feel the same.
Regardless of how we get through our bad times it is simply important that we get through them.
Lindsey
coltsfan715
New member
Pat
<br />
<br />I mentioned God as well and quite honestly don't really care what he meant by it. There are many that deal with chronic health issues that denounce a belief in any "God" and that is their prerogative. I personally have very strange beliefs at times, but none the less I have faith. I say this - if not believing helps you then fine, but don't knock the ones that do believe and have faith that helps them just because you don't feel the same.
<br />
<br />Regardless of how we get through our bad times it is simply important that we get through them.
<br />
<br />Lindsey
<br />
<br />
<br />
<br />I mentioned God as well and quite honestly don't really care what he meant by it. There are many that deal with chronic health issues that denounce a belief in any "God" and that is their prerogative. I personally have very strange beliefs at times, but none the less I have faith. I say this - if not believing helps you then fine, but don't knock the ones that do believe and have faith that helps them just because you don't feel the same.
<br />
<br />Regardless of how we get through our bad times it is simply important that we get through them.
<br />
<br />Lindsey
<br />
<br />
It seems like it's all been said.. I think we have all had many of the feelings you are experiencing & it can be overwhelming at times ..
I also know what you mean about being saddened about the death of someone here that we have come to know <img src="i/expressions/face-icon-small-sad.gif" border="0"> but I also know I need this site & the ppl here for the same reason you said, that the ppl here understand !
I have at times gone on some meds (short term) when needed , have been in therapy for it (which was helpful) & for me (i understand it is not for everyone) have prayed to God & have been prayed for by many ppl..
I think all the feelings you are having are normal for what a CFer goes through, so dont feel guilty about them.. Please know if you want to chat about anything pm me & I will give you my phone # ..
Thoughts, Prayers & {{{hugs}}} to you <img src="i/expressions/heart.gif" border="0"> joni
I also know what you mean about being saddened about the death of someone here that we have come to know <img src="i/expressions/face-icon-small-sad.gif" border="0"> but I also know I need this site & the ppl here for the same reason you said, that the ppl here understand !
I have at times gone on some meds (short term) when needed , have been in therapy for it (which was helpful) & for me (i understand it is not for everyone) have prayed to God & have been prayed for by many ppl..
I think all the feelings you are having are normal for what a CFer goes through, so dont feel guilty about them.. Please know if you want to chat about anything pm me & I will give you my phone # ..
Thoughts, Prayers & {{{hugs}}} to you <img src="i/expressions/heart.gif" border="0"> joni
It seems like it's all been said.. I think we have all had many of the feelings you are experiencing & it can be overwhelming at times ..
I also know what you mean about being saddened about the death of someone here that we have come to know <img src="i/expressions/face-icon-small-sad.gif" border="0"> but I also know I need this site & the ppl here for the same reason you said, that the ppl here understand !
I have at times gone on some meds (short term) when needed , have been in therapy for it (which was helpful) & for me (i understand it is not for everyone) have prayed to God & have been prayed for by many ppl..
I think all the feelings you are having are normal for what a CFer goes through, so dont feel guilty about them.. Please know if you want to chat about anything pm me & I will give you my phone # ..
Thoughts, Prayers & {{{hugs}}} to you <img src="i/expressions/heart.gif" border="0"> joni
I also know what you mean about being saddened about the death of someone here that we have come to know <img src="i/expressions/face-icon-small-sad.gif" border="0"> but I also know I need this site & the ppl here for the same reason you said, that the ppl here understand !
I have at times gone on some meds (short term) when needed , have been in therapy for it (which was helpful) & for me (i understand it is not for everyone) have prayed to God & have been prayed for by many ppl..
I think all the feelings you are having are normal for what a CFer goes through, so dont feel guilty about them.. Please know if you want to chat about anything pm me & I will give you my phone # ..
Thoughts, Prayers & {{{hugs}}} to you <img src="i/expressions/heart.gif" border="0"> joni
<p>It seems like it's all been said.. I think we have all had many of the feelings you are experiencing & it can be overwhelming at times ..
<p>I also know what you mean about being saddened about the death of someone here that we have come to know <img src="i/expressions/face-icon-small-sad.gif" border="0"> but I also know I need this site & the ppl here for the same reason you said, that the ppl here understand !
<p>I have at times gone on some meds (short term) when needed , have been in therapy for it (which was helpful) & for me (i understand it is not for everyone) have prayed to God & have been prayed for by many ppl..
<p>I think all the feelings you are having are normal for what a CFer goes through, so dont feel guilty about them.. Please know if you want to chat about anything pm me & I will give you my phone # ..
<p>Thoughts, Prayers & {{{hugs}}} to you <img src="i/expressions/heart.gif" border="0"> joni
<p>I also know what you mean about being saddened about the death of someone here that we have come to know <img src="i/expressions/face-icon-small-sad.gif" border="0"> but I also know I need this site & the ppl here for the same reason you said, that the ppl here understand !
<p>I have at times gone on some meds (short term) when needed , have been in therapy for it (which was helpful) & for me (i understand it is not for everyone) have prayed to God & have been prayed for by many ppl..
<p>I think all the feelings you are having are normal for what a CFer goes through, so dont feel guilty about them.. Please know if you want to chat about anything pm me & I will give you my phone # ..
<p>Thoughts, Prayers & {{{hugs}}} to you <img src="i/expressions/heart.gif" border="0"> joni