Support Groups

[zoe4life]

NOTE: THIS IS BEING POSTED BY MEL A/K/A JAZZYSMOM


This is a very controvertial topic. Since I am from the age bracket that CFers roomed together etc before the cross contamination factor kicked in.....its difficult for me to consider living otherwise.

I have met & will continue to meet other CFers in person. I am cautious & sadly have had to say No visiting at times. Most recently with my friend Ellie who passed recently. I kick myself in the butt now for not sucking up feeling poorly & going to see her, but its done with.

I also feel that as you get older (JMO) you tend to ease up on the stringent things of CF. I do understand & agree with the physical health being important, but for some the mental/emotional aspect is just as influential if not more so.

As to whether you will find enough people "willing" varies according to the group & the day I believe.

Just remember that most clinics will not approve of a live/in person support group. Our clinic tried a phone conference style with Ellie, myself, Joni & a few others. It wasnt the same & died out rather quickly.

If you are able to accomplish this.....cover your basis with precautions & restrictions.

 

[zoe4life]

NOTE: THIS IS BEING POSTED BY MEL A/K/A JAZZYSMOM


This is a very controvertial topic. Since I am from the age bracket that CFers roomed together etc before the cross contamination factor kicked in.....its difficult for me to consider living otherwise.

I have met & will continue to meet other CFers in person. I am cautious & sadly have had to say No visiting at times. Most recently with my friend Ellie who passed recently. I kick myself in the butt now for not sucking up feeling poorly & going to see her, but its done with.

I also feel that as you get older (JMO) you tend to ease up on the stringent things of CF. I do understand & agree with the physical health being important, but for some the mental/emotional aspect is just as influential if not more so.

As to whether you will find enough people "willing" varies according to the group & the day I believe.

Just remember that most clinics will not approve of a live/in person support group. Our clinic tried a phone conference style with Ellie, myself, Joni & a few others. It wasnt the same & died out rather quickly.

If you are able to accomplish this.....cover your basis with precautions & restrictions.

 

[zoe4life]

NOTE: THIS IS BEING POSTED BY MEL A/K/A JAZZYSMOM


This is a very controvertial topic. Since I am from the age bracket that CFers roomed together etc before the cross contamination factor kicked in.....its difficult for me to consider living otherwise.

I have met & will continue to meet other CFers in person. I am cautious & sadly have had to say No visiting at times. Most recently with my friend Ellie who passed recently. I kick myself in the butt now for not sucking up feeling poorly & going to see her, but its done with.

I also feel that as you get older (JMO) you tend to ease up on the stringent things of CF. I do understand & agree with the physical health being important, but for some the mental/emotional aspect is just as influential if not more so.

As to whether you will find enough people "willing" varies according to the group & the day I believe.

Just remember that most clinics will not approve of a live/in person support group. Our clinic tried a phone conference style with Ellie, myself, Joni & a few others. It wasnt the same & died out rather quickly.

If you are able to accomplish this.....cover your basis with precautions & restrictions.

 

[zoe4life]

NOTE: THIS IS BEING POSTED BY MEL A/K/A JAZZYSMOM


This is a very controvertial topic. Since I am from the age bracket that CFers roomed together etc before the cross contamination factor kicked in.....its difficult for me to consider living otherwise.

I have met & will continue to meet other CFers in person. I am cautious & sadly have had to say No visiting at times. Most recently with my friend Ellie who passed recently. I kick myself in the butt now for not sucking up feeling poorly & going to see her, but its done with.

I also feel that as you get older (JMO) you tend to ease up on the stringent things of CF. I do understand & agree with the physical health being important, but for some the mental/emotional aspect is just as influential if not more so.

As to whether you will find enough people "willing" varies according to the group & the day I believe.

Just remember that most clinics will not approve of a live/in person support group. Our clinic tried a phone conference style with Ellie, myself, Joni & a few others. It wasnt the same & died out rather quickly.

If you are able to accomplish this.....cover your basis with precautions & restrictions.

 

[zoe4life]

NOTE: THIS IS BEING POSTED BY MEL A/K/A JAZZYSMOM
<br />
<br />
<br />This is a very controvertial topic. Since I am from the age bracket that CFers roomed together etc before the cross contamination factor kicked in.....its difficult for me to consider living otherwise.
<br />
<br />I have met & will continue to meet other CFers in person. I am cautious & sadly have had to say No visiting at times. Most recently with my friend Ellie who passed recently. I kick myself in the butt now for not sucking up feeling poorly & going to see her, but its done with.
<br />
<br />I also feel that as you get older (JMO) you tend to ease up on the stringent things of CF. I do understand & agree with the physical health being important, but for some the mental/emotional aspect is just as influential if not more so.
<br />
<br />As to whether you will find enough people "willing" varies according to the group & the day I believe.
<br />
<br />Just remember that most clinics will not approve of a live/in person support group. Our clinic tried a phone conference style with Ellie, myself, Joni & a few others. It wasnt the same & died out rather quickly.
<br />
<br />If you are able to accomplish this.....cover your basis with precautions & restrictions.

 

[megcfgirl05]

true, but they do carry bacteria, that can turn into that. A simple cold can trun in to a bad bacteria. Everyone has their own opinion, do what you want, dont waise time on arugments like this.

 

[megcfgirl05]

true, but they do carry bacteria, that can turn into that. A simple cold can trun in to a bad bacteria. Everyone has their own opinion, do what you want, dont waise time on arugments like this.

 

[megcfgirl05]

true, but they do carry bacteria, that can turn into that. A simple cold can trun in to a bad bacteria. Everyone has their own opinion, do what you want, dont waise time on arugments like this.

 

[megcfgirl05]

true, but they do carry bacteria, that can turn into that. A simple cold can trun in to a bad bacteria. Everyone has their own opinion, do what you want, dont waise time on arugments like this.

 

[megcfgirl05]

true, but they do carry bacteria, that can turn into that. A simple cold can trun in to a bad bacteria. Everyone has their own opinion, do what you want, dont waise time on arugments like this.

 

[ej0820]

hey there!

I've always wished there were live action support groups in my area for CF. I would TOTALLY go! Unfortunately, I have MRSA now and probably would not go for the sake of others. But, if I didn't, I would be there any chance I got! I think it's good to connect with people, not just online. I guess my feeling of being around other sick CFers is, I'll only live once and if spending time with someone who COMPLETELY understands what I go through on a daily basis and doesn't judge me for me issues gives me a little peace and comfort, then I'm all for it.

As far as exchanging bugs, there are various types of masks out there that are designed to not let ANYTHING in or out (i.e. TB masks, which are not the same as regular hospital masks). I would feel completely safe talking with another CFer if one of us (or both) were wearing one.

Also, I can understand not wanting to be around someone with cepacia or PA for fear of catching these, but...if your local grocery store doesn't keep up with their produce maintanence well, you can catch these suckers the next time you shop for onions or tomatoes, ya know? That being said, why not get to know someone who could be really cool and understanding? Chances of cross contamination may not be as high as some think.

I don't mean to put down those who choose not to be around other CFers, or disregard valid thoughts and concerns on this subject. Like I said, I get it...I'm just stating my opinion on meeting with other sickies like me. I also don't mean to make anyone paranoid the next time they need fruits or veggies. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[ej0820]

hey there!

I've always wished there were live action support groups in my area for CF. I would TOTALLY go! Unfortunately, I have MRSA now and probably would not go for the sake of others. But, if I didn't, I would be there any chance I got! I think it's good to connect with people, not just online. I guess my feeling of being around other sick CFers is, I'll only live once and if spending time with someone who COMPLETELY understands what I go through on a daily basis and doesn't judge me for me issues gives me a little peace and comfort, then I'm all for it.

As far as exchanging bugs, there are various types of masks out there that are designed to not let ANYTHING in or out (i.e. TB masks, which are not the same as regular hospital masks). I would feel completely safe talking with another CFer if one of us (or both) were wearing one.

Also, I can understand not wanting to be around someone with cepacia or PA for fear of catching these, but...if your local grocery store doesn't keep up with their produce maintanence well, you can catch these suckers the next time you shop for onions or tomatoes, ya know? That being said, why not get to know someone who could be really cool and understanding? Chances of cross contamination may not be as high as some think.

I don't mean to put down those who choose not to be around other CFers, or disregard valid thoughts and concerns on this subject. Like I said, I get it...I'm just stating my opinion on meeting with other sickies like me. I also don't mean to make anyone paranoid the next time they need fruits or veggies. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[ej0820]

hey there!

I've always wished there were live action support groups in my area for CF. I would TOTALLY go! Unfortunately, I have MRSA now and probably would not go for the sake of others. But, if I didn't, I would be there any chance I got! I think it's good to connect with people, not just online. I guess my feeling of being around other sick CFers is, I'll only live once and if spending time with someone who COMPLETELY understands what I go through on a daily basis and doesn't judge me for me issues gives me a little peace and comfort, then I'm all for it.

As far as exchanging bugs, there are various types of masks out there that are designed to not let ANYTHING in or out (i.e. TB masks, which are not the same as regular hospital masks). I would feel completely safe talking with another CFer if one of us (or both) were wearing one.

Also, I can understand not wanting to be around someone with cepacia or PA for fear of catching these, but...if your local grocery store doesn't keep up with their produce maintanence well, you can catch these suckers the next time you shop for onions or tomatoes, ya know? That being said, why not get to know someone who could be really cool and understanding? Chances of cross contamination may not be as high as some think.

I don't mean to put down those who choose not to be around other CFers, or disregard valid thoughts and concerns on this subject. Like I said, I get it...I'm just stating my opinion on meeting with other sickies like me. I also don't mean to make anyone paranoid the next time they need fruits or veggies. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[ej0820]

hey there!

I've always wished there were live action support groups in my area for CF. I would TOTALLY go! Unfortunately, I have MRSA now and probably would not go for the sake of others. But, if I didn't, I would be there any chance I got! I think it's good to connect with people, not just online. I guess my feeling of being around other sick CFers is, I'll only live once and if spending time with someone who COMPLETELY understands what I go through on a daily basis and doesn't judge me for me issues gives me a little peace and comfort, then I'm all for it.

As far as exchanging bugs, there are various types of masks out there that are designed to not let ANYTHING in or out (i.e. TB masks, which are not the same as regular hospital masks). I would feel completely safe talking with another CFer if one of us (or both) were wearing one.

Also, I can understand not wanting to be around someone with cepacia or PA for fear of catching these, but...if your local grocery store doesn't keep up with their produce maintanence well, you can catch these suckers the next time you shop for onions or tomatoes, ya know? That being said, why not get to know someone who could be really cool and understanding? Chances of cross contamination may not be as high as some think.

I don't mean to put down those who choose not to be around other CFers, or disregard valid thoughts and concerns on this subject. Like I said, I get it...I'm just stating my opinion on meeting with other sickies like me. I also don't mean to make anyone paranoid the next time they need fruits or veggies. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[ej0820]

hey there!
<br />
<br />I've always wished there were live action support groups in my area for CF. I would TOTALLY go! Unfortunately, I have MRSA now and probably would not go for the sake of others. But, if I didn't, I would be there any chance I got! I think it's good to connect with people, not just online. I guess my feeling of being around other sick CFers is, I'll only live once and if spending time with someone who COMPLETELY understands what I go through on a daily basis and doesn't judge me for me issues gives me a little peace and comfort, then I'm all for it.
<br />
<br />As far as exchanging bugs, there are various types of masks out there that are designed to not let ANYTHING in or out (i.e. TB masks, which are not the same as regular hospital masks). I would feel completely safe talking with another CFer if one of us (or both) were wearing one.
<br />
<br />Also, I can understand not wanting to be around someone with cepacia or PA for fear of catching these, but...if your local grocery store doesn't keep up with their produce maintanence well, you can catch these suckers the next time you shop for onions or tomatoes, ya know? That being said, why not get to know someone who could be really cool and understanding? Chances of cross contamination may not be as high as some think.
<br />
<br />I don't mean to put down those who choose not to be around other CFers, or disregard valid thoughts and concerns on this subject. Like I said, I get it...I'm just stating my opinion on meeting with other sickies like me. I also don't mean to make anyone paranoid the next time they need fruits or veggies. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[Transplantmommy]

Since there are so many people being so negative on here. I wanted to put more positive into it. My CF doctor has NEVER stopped me from seeing other patients with CF. I know the risks and I know to stay away from cepacia and MRSA (even after transplant). My doc even took me into another patients room not too long after my transplant (when I was at clinic) because he wanted me to talk to a guy who needed double lung and liver transplant (just like I had). I take the proper precautions...wear a mask and wash my hands after I leave the room.

Even my transplant doc has told me that it was okay for me to meet other CFers in person. Heck, I have met about 5 in the waiting room at my transplant clinic. You can't always avoid the 3 foot rule while waiting in a crowded waiting room. Had I not been talking to people and another person say "You have CF? So do I." I wouldn't even know that I was sitting next to someone who has CF.

Life is full of risks, no matter what you do. You can try to keep yourself as healthy as possible, but believe me, it's not going to last forever. I'm not going to live my life in a bubble...I have places to go, friends (including CF ones) and family to see, and a life to live.

 

[Transplantmommy]

Since there are so many people being so negative on here. I wanted to put more positive into it. My CF doctor has NEVER stopped me from seeing other patients with CF. I know the risks and I know to stay away from cepacia and MRSA (even after transplant). My doc even took me into another patients room not too long after my transplant (when I was at clinic) because he wanted me to talk to a guy who needed double lung and liver transplant (just like I had). I take the proper precautions...wear a mask and wash my hands after I leave the room.

Even my transplant doc has told me that it was okay for me to meet other CFers in person. Heck, I have met about 5 in the waiting room at my transplant clinic. You can't always avoid the 3 foot rule while waiting in a crowded waiting room. Had I not been talking to people and another person say "You have CF? So do I." I wouldn't even know that I was sitting next to someone who has CF.

Life is full of risks, no matter what you do. You can try to keep yourself as healthy as possible, but believe me, it's not going to last forever. I'm not going to live my life in a bubble...I have places to go, friends (including CF ones) and family to see, and a life to live.

 

[Transplantmommy]

Since there are so many people being so negative on here. I wanted to put more positive into it. My CF doctor has NEVER stopped me from seeing other patients with CF. I know the risks and I know to stay away from cepacia and MRSA (even after transplant). My doc even took me into another patients room not too long after my transplant (when I was at clinic) because he wanted me to talk to a guy who needed double lung and liver transplant (just like I had). I take the proper precautions...wear a mask and wash my hands after I leave the room.

Even my transplant doc has told me that it was okay for me to meet other CFers in person. Heck, I have met about 5 in the waiting room at my transplant clinic. You can't always avoid the 3 foot rule while waiting in a crowded waiting room. Had I not been talking to people and another person say "You have CF? So do I." I wouldn't even know that I was sitting next to someone who has CF.

Life is full of risks, no matter what you do. You can try to keep yourself as healthy as possible, but believe me, it's not going to last forever. I'm not going to live my life in a bubble...I have places to go, friends (including CF ones) and family to see, and a life to live.

 

[Transplantmommy]

Since there are so many people being so negative on here. I wanted to put more positive into it. My CF doctor has NEVER stopped me from seeing other patients with CF. I know the risks and I know to stay away from cepacia and MRSA (even after transplant). My doc even took me into another patients room not too long after my transplant (when I was at clinic) because he wanted me to talk to a guy who needed double lung and liver transplant (just like I had). I take the proper precautions...wear a mask and wash my hands after I leave the room.

Even my transplant doc has told me that it was okay for me to meet other CFers in person. Heck, I have met about 5 in the waiting room at my transplant clinic. You can't always avoid the 3 foot rule while waiting in a crowded waiting room. Had I not been talking to people and another person say "You have CF? So do I." I wouldn't even know that I was sitting next to someone who has CF.

Life is full of risks, no matter what you do. You can try to keep yourself as healthy as possible, but believe me, it's not going to last forever. I'm not going to live my life in a bubble...I have places to go, friends (including CF ones) and family to see, and a life to live.

 

[Transplantmommy]

Since there are so many people being so negative on here. I wanted to put more positive into it. My CF doctor has NEVER stopped me from seeing other patients with CF. I know the risks and I know to stay away from cepacia and MRSA (even after transplant). My doc even took me into another patients room not too long after my transplant (when I was at clinic) because he wanted me to talk to a guy who needed double lung and liver transplant (just like I had). I take the proper precautions...wear a mask and wash my hands after I leave the room.
<br />
<br />Even my transplant doc has told me that it was okay for me to meet other CFers in person. Heck, I have met about 5 in the waiting room at my transplant clinic. You can't always avoid the 3 foot rule while waiting in a crowded waiting room. Had I not been talking to people and another person say "You have CF? So do I." I wouldn't even know that I was sitting next to someone who has CF.
<br />
<br />Life is full of risks, no matter what you do. You can try to keep yourself as healthy as possible, but believe me, it's not going to last forever. I'm not going to live my life in a bubble...I have places to go, friends (including CF ones) and family to see, and a life to live.