So Marty has another appointment on Monday at the CF center. I find myself getting so nervous for every stinkin appointment. Everytime we go there is always something going on. It is soooo annoying. The night before the appointment I can't even sleep!! I feel pretty comfortable there and Marty gives me no trouble at all about going. I just am terrified of more bad news. He has appointments so frequently that it is impossible for me not to go alone. Hubby usually as to work. He comes if it is something big but not for regular CF check ups. I just feel like everytime is a big deal. We are hoping for his PFTs to be up and I know he has lost more weight. I just don't know why I get so freaked out!! Ugh! I guess I am posting because I am tired of feeling so alone with this. The doctor did call me though with the results of the stool test and said he is still malabsorbing even with the high dose of enzymes. So at least I already know those test results and he didn't grow anything new in the bronch from the SA and PA. Such a relief!! So we know the breathing meds are correct! Just am feeling weird...like WHAT'S NEXT?? I don't know if I am just afraid of what the scale says or what?? Oh well...thanks for listening to my rantings and ravings!! <img src="i/expressions/face-icon-small-wink.gif" border="0"> I hope everyone is doing well!!
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Does this happen to anyone else?
- Thread starter martysmom
- Start date
So Marty has another appointment on Monday at the CF center. I find myself getting so nervous for every stinkin appointment. Everytime we go there is always something going on. It is soooo annoying. The night before the appointment I can't even sleep!! I feel pretty comfortable there and Marty gives me no trouble at all about going. I just am terrified of more bad news. He has appointments so frequently that it is impossible for me not to go alone. Hubby usually as to work. He comes if it is something big but not for regular CF check ups. I just feel like everytime is a big deal. We are hoping for his PFTs to be up and I know he has lost more weight. I just don't know why I get so freaked out!! Ugh! I guess I am posting because I am tired of feeling so alone with this. The doctor did call me though with the results of the stool test and said he is still malabsorbing even with the high dose of enzymes. So at least I already know those test results and he didn't grow anything new in the bronch from the SA and PA. Such a relief!! So we know the breathing meds are correct! Just am feeling weird...like WHAT'S NEXT?? I don't know if I am just afraid of what the scale says or what?? Oh well...thanks for listening to my rantings and ravings!! <img src="i/expressions/face-icon-small-wink.gif" border="0"> I hope everyone is doing well!!
So Marty has another appointment on Monday at the CF center. I find myself getting so nervous for every stinkin appointment. Everytime we go there is always something going on. It is soooo annoying. The night before the appointment I can't even sleep!! I feel pretty comfortable there and Marty gives me no trouble at all about going. I just am terrified of more bad news. He has appointments so frequently that it is impossible for me not to go alone. Hubby usually as to work. He comes if it is something big but not for regular CF check ups. I just feel like everytime is a big deal. We are hoping for his PFTs to be up and I know he has lost more weight. I just don't know why I get so freaked out!! Ugh! I guess I am posting because I am tired of feeling so alone with this. The doctor did call me though with the results of the stool test and said he is still malabsorbing even with the high dose of enzymes. So at least I already know those test results and he didn't grow anything new in the bronch from the SA and PA. Such a relief!! So we know the breathing meds are correct! Just am feeling weird...like WHAT'S NEXT?? I don't know if I am just afraid of what the scale says or what?? Oh well...thanks for listening to my rantings and ravings!! <img src="i/expressions/face-icon-small-wink.gif" border="0"> I hope everyone is doing well!!
M
Mommafirst
Guest
Ya know, it kind of sounds like post traumatic stress syndrome. Did I ever show you the artcile they did in Brazil about parents of CF patients and PTSS?? It really does a good job highlighting how so much of what we deal with is traumatic and we suffer in the same way that those with PTSS do.
You and Marty have been through plenty, so I can understand your fear. When we were told that we needed to think about a feeding tube and our doctor called us at home to convince us, I dreaded each CF visit and the weight checks. I'm a little more relaxed these days, but its always just there under the surface ready to poke its head back out as soon as something stressful starts coming up.
((((HUGS))))) You are not alone.
You and Marty have been through plenty, so I can understand your fear. When we were told that we needed to think about a feeding tube and our doctor called us at home to convince us, I dreaded each CF visit and the weight checks. I'm a little more relaxed these days, but its always just there under the surface ready to poke its head back out as soon as something stressful starts coming up.
((((HUGS))))) You are not alone.
M
Mommafirst
Guest
Ya know, it kind of sounds like post traumatic stress syndrome. Did I ever show you the artcile they did in Brazil about parents of CF patients and PTSS?? It really does a good job highlighting how so much of what we deal with is traumatic and we suffer in the same way that those with PTSS do.
You and Marty have been through plenty, so I can understand your fear. When we were told that we needed to think about a feeding tube and our doctor called us at home to convince us, I dreaded each CF visit and the weight checks. I'm a little more relaxed these days, but its always just there under the surface ready to poke its head back out as soon as something stressful starts coming up.
((((HUGS))))) You are not alone.
You and Marty have been through plenty, so I can understand your fear. When we were told that we needed to think about a feeding tube and our doctor called us at home to convince us, I dreaded each CF visit and the weight checks. I'm a little more relaxed these days, but its always just there under the surface ready to poke its head back out as soon as something stressful starts coming up.
((((HUGS))))) You are not alone.
M
Mommafirst
Guest
Ya know, it kind of sounds like post traumatic stress syndrome. Did I ever show you the artcile they did in Brazil about parents of CF patients and PTSS?? It really does a good job highlighting how so much of what we deal with is traumatic and we suffer in the same way that those with PTSS do.
<br />
<br />You and Marty have been through plenty, so I can understand your fear. When we were told that we needed to think about a feeding tube and our doctor called us at home to convince us, I dreaded each CF visit and the weight checks. I'm a little more relaxed these days, but its always just there under the surface ready to poke its head back out as soon as something stressful starts coming up.
<br />
<br />((((HUGS))))) You are not alone.
<br />
<br />You and Marty have been through plenty, so I can understand your fear. When we were told that we needed to think about a feeding tube and our doctor called us at home to convince us, I dreaded each CF visit and the weight checks. I'm a little more relaxed these days, but its always just there under the surface ready to poke its head back out as soon as something stressful starts coming up.
<br />
<br />((((HUGS))))) You are not alone.
Heather,
((((HUGS)))) thanks!! You always have such great advice!! I do think I am pretty traumatized and I always walk out of the CF center totally fatootsed. I always act like such a wierdo when I am there too!! HAHAHA! Last time I was so nervous I tripped and made a fool out of myself <img src="i/expressions/face-icon-small-happy.gif" border="0"> Thank goodness I did not fall on my face!! When ever they tell me something else that is wrong or perhaps another diagnosis I always try to argue with them so they will take it back! They must think I am crazy!! I do hope this passes soon and I get use to this. I have been taking him to doctors his whole life to find out what was wrong. Now that he is 5 and has a diagnosis....I keep looking for answers when we already have them. I can stop playing detective now and it is hard to accept some of these answers. Thanks again!!
((((HUGS)))) thanks!! You always have such great advice!! I do think I am pretty traumatized and I always walk out of the CF center totally fatootsed. I always act like such a wierdo when I am there too!! HAHAHA! Last time I was so nervous I tripped and made a fool out of myself <img src="i/expressions/face-icon-small-happy.gif" border="0"> Thank goodness I did not fall on my face!! When ever they tell me something else that is wrong or perhaps another diagnosis I always try to argue with them so they will take it back! They must think I am crazy!! I do hope this passes soon and I get use to this. I have been taking him to doctors his whole life to find out what was wrong. Now that he is 5 and has a diagnosis....I keep looking for answers when we already have them. I can stop playing detective now and it is hard to accept some of these answers. Thanks again!!
Heather,
((((HUGS)))) thanks!! You always have such great advice!! I do think I am pretty traumatized and I always walk out of the CF center totally fatootsed. I always act like such a wierdo when I am there too!! HAHAHA! Last time I was so nervous I tripped and made a fool out of myself <img src="i/expressions/face-icon-small-happy.gif" border="0"> Thank goodness I did not fall on my face!! When ever they tell me something else that is wrong or perhaps another diagnosis I always try to argue with them so they will take it back! They must think I am crazy!! I do hope this passes soon and I get use to this. I have been taking him to doctors his whole life to find out what was wrong. Now that he is 5 and has a diagnosis....I keep looking for answers when we already have them. I can stop playing detective now and it is hard to accept some of these answers. Thanks again!!
((((HUGS)))) thanks!! You always have such great advice!! I do think I am pretty traumatized and I always walk out of the CF center totally fatootsed. I always act like such a wierdo when I am there too!! HAHAHA! Last time I was so nervous I tripped and made a fool out of myself <img src="i/expressions/face-icon-small-happy.gif" border="0"> Thank goodness I did not fall on my face!! When ever they tell me something else that is wrong or perhaps another diagnosis I always try to argue with them so they will take it back! They must think I am crazy!! I do hope this passes soon and I get use to this. I have been taking him to doctors his whole life to find out what was wrong. Now that he is 5 and has a diagnosis....I keep looking for answers when we already have them. I can stop playing detective now and it is hard to accept some of these answers. Thanks again!!
Heather,
<br />((((HUGS)))) thanks!! You always have such great advice!! I do think I am pretty traumatized and I always walk out of the CF center totally fatootsed. I always act like such a wierdo when I am there too!! HAHAHA! Last time I was so nervous I tripped and made a fool out of myself <img src="i/expressions/face-icon-small-happy.gif" border="0"> Thank goodness I did not fall on my face!! When ever they tell me something else that is wrong or perhaps another diagnosis I always try to argue with them so they will take it back! They must think I am crazy!! I do hope this passes soon and I get use to this. I have been taking him to doctors his whole life to find out what was wrong. Now that he is 5 and has a diagnosis....I keep looking for answers when we already have them. I can stop playing detective now and it is hard to accept some of these answers. Thanks again!!
<br />((((HUGS)))) thanks!! You always have such great advice!! I do think I am pretty traumatized and I always walk out of the CF center totally fatootsed. I always act like such a wierdo when I am there too!! HAHAHA! Last time I was so nervous I tripped and made a fool out of myself <img src="i/expressions/face-icon-small-happy.gif" border="0"> Thank goodness I did not fall on my face!! When ever they tell me something else that is wrong or perhaps another diagnosis I always try to argue with them so they will take it back! They must think I am crazy!! I do hope this passes soon and I get use to this. I have been taking him to doctors his whole life to find out what was wrong. Now that he is 5 and has a diagnosis....I keep looking for answers when we already have them. I can stop playing detective now and it is hard to accept some of these answers. Thanks again!!
I agree with Heather. I get those anxious feelings as well sometimes. Clinic days are so overwhelming anyways because of all they squeeze into one visit. Always worried right before did we do everything we were supposed to from last visit? Will she behave or will we have to hold her down for cultures? Is her weight gain enough?
All that to say, don't feel like you are the only one. I try to remember that we are all on the same team, the clinic and I. We all want to know and do everything we can to keep her healthy, even though during some visits I feel like I am in the middle of a final exam <img src="i/expressions/face-icon-small-wink.gif" border="0">
Hope he has a good visit!
All that to say, don't feel like you are the only one. I try to remember that we are all on the same team, the clinic and I. We all want to know and do everything we can to keep her healthy, even though during some visits I feel like I am in the middle of a final exam <img src="i/expressions/face-icon-small-wink.gif" border="0">
Hope he has a good visit!
I agree with Heather. I get those anxious feelings as well sometimes. Clinic days are so overwhelming anyways because of all they squeeze into one visit. Always worried right before did we do everything we were supposed to from last visit? Will she behave or will we have to hold her down for cultures? Is her weight gain enough?
All that to say, don't feel like you are the only one. I try to remember that we are all on the same team, the clinic and I. We all want to know and do everything we can to keep her healthy, even though during some visits I feel like I am in the middle of a final exam <img src="i/expressions/face-icon-small-wink.gif" border="0">
Hope he has a good visit!
All that to say, don't feel like you are the only one. I try to remember that we are all on the same team, the clinic and I. We all want to know and do everything we can to keep her healthy, even though during some visits I feel like I am in the middle of a final exam <img src="i/expressions/face-icon-small-wink.gif" border="0">
Hope he has a good visit!
I agree with Heather. I get those anxious feelings as well sometimes. Clinic days are so overwhelming anyways because of all they squeeze into one visit. Always worried right before did we do everything we were supposed to from last visit? Will she behave or will we have to hold her down for cultures? Is her weight gain enough?
<br />
<br />All that to say, don't feel like you are the only one. I try to remember that we are all on the same team, the clinic and I. We all want to know and do everything we can to keep her healthy, even though during some visits I feel like I am in the middle of a final exam <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
<br />Hope he has a good visit!
<br />
<br />All that to say, don't feel like you are the only one. I try to remember that we are all on the same team, the clinic and I. We all want to know and do everything we can to keep her healthy, even though during some visits I feel like I am in the middle of a final exam <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
<br />Hope he has a good visit!
AleksandraKaczynska
New member
You're not alone. I always feel anxious the day before and worry "what'll be next". I guess we are parents for no reason... My husband seems not to worry - but, on this day, he calls me like 4 - 10 times so I tell him what now, what this and that doc said and so on... <img src="i/expressions/face-icon-small-smile.gif" border="0">
I just try to do thing slower so I don't do or say something I didn't want to <img src="i/expressions/face-icon-small-smile.gif" border="0"> but the nerves are there all the time....
Good luck on the visit.
I just try to do thing slower so I don't do or say something I didn't want to <img src="i/expressions/face-icon-small-smile.gif" border="0"> but the nerves are there all the time....
Good luck on the visit.
AleksandraKaczynska
New member
You're not alone. I always feel anxious the day before and worry "what'll be next". I guess we are parents for no reason... My husband seems not to worry - but, on this day, he calls me like 4 - 10 times so I tell him what now, what this and that doc said and so on... <img src="i/expressions/face-icon-small-smile.gif" border="0">
I just try to do thing slower so I don't do or say something I didn't want to <img src="i/expressions/face-icon-small-smile.gif" border="0"> but the nerves are there all the time....
Good luck on the visit.
I just try to do thing slower so I don't do or say something I didn't want to <img src="i/expressions/face-icon-small-smile.gif" border="0"> but the nerves are there all the time....
Good luck on the visit.
AleksandraKaczynska
New member
You're not alone. I always feel anxious the day before and worry "what'll be next". I guess we are parents for no reason... My husband seems not to worry - but, on this day, he calls me like 4 - 10 times so I tell him what now, what this and that doc said and so on... <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />I just try to do thing slower so I don't do or say something I didn't want to <img src="i/expressions/face-icon-small-smile.gif" border="0"> but the nerves are there all the time....
<br />Good luck on the visit.
<br />I just try to do thing slower so I don't do or say something I didn't want to <img src="i/expressions/face-icon-small-smile.gif" border="0"> but the nerves are there all the time....
<br />Good luck on the visit.
I used to get soooo stressed out when we'd go to the local cf clinic. Had issues with the pulmonologist who'd criticize everything -- medications our primary cf doctor in the City prescribed, our childcare and extracurricular sports choices... Even what we fed ds. I was sooo stressed out going into the appoinments being on the defensive...
Added stress was caused by the tiny crowded waiting room and concerns with cross contamination due to their "musical rooms" policy. Patients went from room to room to meet the doctors and staff, not the other way around. So I was worried DS was going to get sick FROM his appointment.
The appointments took most of the day, mostly spent cooling our heels while DS threw himself against the exam room door trying to escape. And then some well meaning staff member would bring in a toy from the community waiting room to entertain DS. It was a nightmare!
So I understand the feelings of panic, being overwhelmed with what ifs. We have a different clinic situation nowdays, so we're not as stressed out. I still have some worries, but not sheer overwhelming panic and insomnia.
Added stress was caused by the tiny crowded waiting room and concerns with cross contamination due to their "musical rooms" policy. Patients went from room to room to meet the doctors and staff, not the other way around. So I was worried DS was going to get sick FROM his appointment.
The appointments took most of the day, mostly spent cooling our heels while DS threw himself against the exam room door trying to escape. And then some well meaning staff member would bring in a toy from the community waiting room to entertain DS. It was a nightmare!
So I understand the feelings of panic, being overwhelmed with what ifs. We have a different clinic situation nowdays, so we're not as stressed out. I still have some worries, but not sheer overwhelming panic and insomnia.
I used to get soooo stressed out when we'd go to the local cf clinic. Had issues with the pulmonologist who'd criticize everything -- medications our primary cf doctor in the City prescribed, our childcare and extracurricular sports choices... Even what we fed ds. I was sooo stressed out going into the appoinments being on the defensive...
Added stress was caused by the tiny crowded waiting room and concerns with cross contamination due to their "musical rooms" policy. Patients went from room to room to meet the doctors and staff, not the other way around. So I was worried DS was going to get sick FROM his appointment.
The appointments took most of the day, mostly spent cooling our heels while DS threw himself against the exam room door trying to escape. And then some well meaning staff member would bring in a toy from the community waiting room to entertain DS. It was a nightmare!
So I understand the feelings of panic, being overwhelmed with what ifs. We have a different clinic situation nowdays, so we're not as stressed out. I still have some worries, but not sheer overwhelming panic and insomnia.
Added stress was caused by the tiny crowded waiting room and concerns with cross contamination due to their "musical rooms" policy. Patients went from room to room to meet the doctors and staff, not the other way around. So I was worried DS was going to get sick FROM his appointment.
The appointments took most of the day, mostly spent cooling our heels while DS threw himself against the exam room door trying to escape. And then some well meaning staff member would bring in a toy from the community waiting room to entertain DS. It was a nightmare!
So I understand the feelings of panic, being overwhelmed with what ifs. We have a different clinic situation nowdays, so we're not as stressed out. I still have some worries, but not sheer overwhelming panic and insomnia.
I used to get soooo stressed out when we'd go to the local cf clinic. Had issues with the pulmonologist who'd criticize everything -- medications our primary cf doctor in the City prescribed, our childcare and extracurricular sports choices... Even what we fed ds. I was sooo stressed out going into the appoinments being on the defensive...
<br />
<br />Added stress was caused by the tiny crowded waiting room and concerns with cross contamination due to their "musical rooms" policy. Patients went from room to room to meet the doctors and staff, not the other way around. So I was worried DS was going to get sick FROM his appointment.
<br />
<br />The appointments took most of the day, mostly spent cooling our heels while DS threw himself against the exam room door trying to escape. And then some well meaning staff member would bring in a toy from the community waiting room to entertain DS. It was a nightmare!
<br />
<br />So I understand the feelings of panic, being overwhelmed with what ifs. We have a different clinic situation nowdays, so we're not as stressed out. I still have some worries, but not sheer overwhelming panic and insomnia.
<br />
<br />Added stress was caused by the tiny crowded waiting room and concerns with cross contamination due to their "musical rooms" policy. Patients went from room to room to meet the doctors and staff, not the other way around. So I was worried DS was going to get sick FROM his appointment.
<br />
<br />The appointments took most of the day, mostly spent cooling our heels while DS threw himself against the exam room door trying to escape. And then some well meaning staff member would bring in a toy from the community waiting room to entertain DS. It was a nightmare!
<br />
<br />So I understand the feelings of panic, being overwhelmed with what ifs. We have a different clinic situation nowdays, so we're not as stressed out. I still have some worries, but not sheer overwhelming panic and insomnia.
You are not alone. I used to be wiped out after clinic day, totally. Hard to explain, just brought up alot of feelings. Maggie had been doing so well, these feeling had diminished and CF clinic day turned into a special mom and daughter day(weird I know)...
Now, she's had a few set backs and we are going to clinic again in a few days after just having been there 2 weeks ago...I am anxious already, worried about PFT's, what her culture will show, etc. Lots of questions...Still hoping to make it to Target after though......
Now, she's had a few set backs and we are going to clinic again in a few days after just having been there 2 weeks ago...I am anxious already, worried about PFT's, what her culture will show, etc. Lots of questions...Still hoping to make it to Target after though......
You are not alone. I used to be wiped out after clinic day, totally. Hard to explain, just brought up alot of feelings. Maggie had been doing so well, these feeling had diminished and CF clinic day turned into a special mom and daughter day(weird I know)...
Now, she's had a few set backs and we are going to clinic again in a few days after just having been there 2 weeks ago...I am anxious already, worried about PFT's, what her culture will show, etc. Lots of questions...Still hoping to make it to Target after though......
Now, she's had a few set backs and we are going to clinic again in a few days after just having been there 2 weeks ago...I am anxious already, worried about PFT's, what her culture will show, etc. Lots of questions...Still hoping to make it to Target after though......