Where are all the people with CF on this forum when you need support?!
- Thread starter believingjesus
- Start date
Aw! Thank you so much for your very kind comments!! I try, but often feel like it's not enough, so your comment was nice to hear.
Believinginjesus,
I was not offended, and I don't think apologies are necessary. While you say you typed it out of anger, you were simply stating an observation and how it made you feel. You didn't swear, or name call, etc. I hope this place is a place where people feel free to express their feelings, and a constructive, respectful discussion can follow such as what has happened in this thread.
Autumn 34 w/CF
I was not offended, and I don't think apologies are necessary. While you say you typed it out of anger, you were simply stating an observation and how it made you feel. You didn't swear, or name call, etc. I hope this place is a place where people feel free to express their feelings, and a constructive, respectful discussion can follow such as what has happened in this thread.
Autumn 34 w/CF
I think this is an excellent point regarding not allowing yourself to "go there". Sometimes we as CFers are fighting so many of our own demons that it's hard to hear about others. I sometimes have to take a "break" from this site because it gets a little depressing if you allow yourself to really get swallowed up by everything you read. Sometimes something hits too close to home for me, and I can't even go there. For example, recently two young women with CF that I know of have passed away leaving young children.. I have a 3 year old daughter and honestly often lay in bed at night thinking about what it will do to her if something happens to me while she is young. When I hear about these mothers dying it's honestly something I have to try really hard to shut out, or it will consume me. It sounds cold, but it's really just a coping mechanism. I think that could be what goes on here on this site. People can't deal because they're dealing with so much themselves, or they see themselves in the post and can't go there.
Anyway, that's my extra 2 cents. Haha!
Autumn 34 w/cf
TreasureGoddess
Member
believingjesus, I think we all have been guilty of speaking when we should've kept quiet or saying more than we should have. Please don't feel bad about it. I think if nothing else, it made me more aware of the help I can provide here and there. I think some good has come of the post for sure.
I think some good has come of the post for sure.All:
This is really an incredible study of empathy and how far we come everyday as a community...and how far we want to go!
When this thread first came up, I was puzzled, wondering how this thread would play out and I thought...hmmm people are always so responsive and well- spoken.
I think the missionary work done here is magnificent.
I am the founder of the site and my husband and I keep the lights on and database solid....for searching.
I am always amazed that this community is in my life and through this platform you can make a difference in so many lives.
It is with compassion, courage and LOVE that we are evolving together.
So many aspects of the energy of suffering are laid out right here in this thread, from fear, misgivings, and doubt to wisdom, courage and love.
You are the Salt of the earth and the Light of the World.
Jeanne
This is really an incredible study of empathy and how far we come everyday as a community...and how far we want to go!
When this thread first came up, I was puzzled, wondering how this thread would play out and I thought...hmmm people are always so responsive and well- spoken.
I think the missionary work done here is magnificent.
I am the founder of the site and my husband and I keep the lights on and database solid....for searching.
I am always amazed that this community is in my life and through this platform you can make a difference in so many lives.
It is with compassion, courage and LOVE that we are evolving together.
So many aspects of the energy of suffering are laid out right here in this thread, from fear, misgivings, and doubt to wisdom, courage and love.
You are the Salt of the earth and the Light of the World.
Jeanne
Believinginjesus:
You didn't give your son CF, any more than my parents "gave me CF". My milder mutation is very rare and has been traced back to seven families in Northern Ireland. My 4th Great Grand Father left Northern Ireland in about 1820. I suppose that I could blame him but he too was an innocent host of the mutation. So, if I wanted to "blame" someone, I would need to go back to prior to 1776, the year he was born. My Mother passed Delta F508 to me but like my Dad, there is nobody in her extended family with CF. She, too, was an innocent host.
Give up the notion that you gave your son CF. You, like my parents and your husband were also innocent hosts. You had no more control of this mutation than you can control the colors of your son's eyes or hair.
You DID NOT DO ANYTHING WRONG.
Bill
You didn't give your son CF, any more than my parents "gave me CF". My milder mutation is very rare and has been traced back to seven families in Northern Ireland. My 4th Great Grand Father left Northern Ireland in about 1820. I suppose that I could blame him but he too was an innocent host of the mutation. So, if I wanted to "blame" someone, I would need to go back to prior to 1776, the year he was born. My Mother passed Delta F508 to me but like my Dad, there is nobody in her extended family with CF. She, too, was an innocent host.
Give up the notion that you gave your son CF. You, like my parents and your husband were also innocent hosts. You had no more control of this mutation than you can control the colors of your son's eyes or hair.
You DID NOT DO ANYTHING WRONG.
Bill
W
windex125
Guest
Imogene you hv helped me several times concerning my problems with posting, and other issues. This site has helped me so much. Esp. concerning all the issues I've come across. which the CF brings on. I thank you for yr. time and dedication always. I thank all the people with CF who have given me the help and answers, I sometimes am looking for. Sometimes no answers, but that's how it goes? At first I looked at the post and got very pissed off, then I waited a day to sit and write. Sometimes that is the best. Guilt is a terrible thing to feel, and I think getting professional help is a very good source, I know it's helped me. I was told I wld never have children so for the first 11yrs. of my marriage I did not use birth control. Then the EPT test stick turned pink I was 36 not in the best of health. My son is a carrier, sure I feel bad about that as well. But someone had other plans for me and blessed me with a son. Never to have another baby either just one. We CF's were dealt a bad deck of cards what can we do? that's how I try to look at it. As for getting information off the computer it was always more upsetting than hearing from someone that may hv experienced such issues. So I say thank you to you and yr husband, and all the CF's out there that hv helped me many times with their own experiences. Pat/60
believingjesus
Banned
Printer: Thank you for responding and telling me that. I appreciate it. Nothing changes the way I know though but I appreciate you responding. I value that.
believingjesus:
If you want to beat yourself for no reason, help yourself. The fact is that you, and your husband, did nothing different in producing your "healthy" son than you did in producing the son with CF.
It was "divine intervention" that chose the genes that your sons were given, you had no part in it.
Bill
If you want to beat yourself for no reason, help yourself. The fact is that you, and your husband, did nothing different in producing your "healthy" son than you did in producing the son with CF.
It was "divine intervention" that chose the genes that your sons were given, you had no part in it.
Bill
believingjesus
Banned
You know even though I know its my fault I also know that God does not want me to be afraid or my son. I know that fear is not of the Lord. I try but I have a worry-filled mind and I keep trying to take it out of the hands of my Jesus and I should just leave it there. He has kept my son healthy to this day. My sons pft's are over 100. The doctor he has now only always says how wonderful he is doing and how he is able to live his dream and I should not worry as he is so fortunate. I keep taking it back when I should just leave it with God as my son is in the best hands with Him. When I have been afraid I lean on Jesus and He has not failed me and He will never fail me. My son is doing wonderful and I have got to not let this "eat" at me and trust Jesus. I should follow my own advice and remember Matthew 11: 28 - 30; 2 Timothy 1:7; 1 Peter 5:7; and Hebrews 13:8; and Hebrews 13:5. I concentrate on the bad but there is so much to be thankful for especially that God IS taking care of my son and will continue to do so.
hdpeterson
New member
I tend not to reply to anything that people are seeking compassion/uplifting because well I just suck at it. I am horrible at empathy. I am a very blunt person and most of the time the way I say things come out mean so I just tend to not say anything. Plus I can't relate to parents/siblings/friends etc of someone with cf. I have cf myself so I don't quite know how to relate and don't want to say the wrong thing. Now if it is a cfer and I can make what I say not so horrible then yeah but even then it is hard.
believingjesus
Banned
I appreciate your reply. My son is the same way. He is very private and seems to only relate to others going through similar circumstances. I know not everyone is the same. I posted this when I was upset and have tried to apologize. I love having people to ask questions of that are going through similar situations. I am thankful for this forum. I understand how u feel, as my son does also. I am not going through it all as he is. I wish I could tho for him. Nobody deserves CF.
W
windex125
Guest
hdpeterson I agree with you 100% well said people think I am quite cynical and I do not care, most times I want to do that smack from the movie MOONSTRUCK
Snap out of it.... sorry can't help it.... Pat-60/CF
Snap out of it.... sorry can't help it.... Pat-60/CF
LittleLab4CF
Super Moderator
Listening is a gift or a hard learned craft. By profession and personality I am a problem solver which blinds me to the frequent need for commiseration, and emotional support expressed by a post topic. Around the time I began reading CysticFibrosis.com, a cry for support had deteriorated to an embarrassing brawl, in relative terms.
Somebody was not having a "quality" hospital experience and she had a very sick little CFer. In a way, advice on solving her problems led to a disconnect between what people thought she was asking for, advice or consolation, and it wasn't advice. Almost to the person men leaned toward advice and the ladies hit it like radar. It seems more people who want support or to rant are making that clear. I've learned to listen and to hear.
How often and how much I contribute depends a lot on my own joys of CF management. Being a scientist, I answer at length when someone has a question about CF medicine and such. We all could do better at connecting with fellow CFers in a low moment.
Thanks for the reminder that we are a family and it always feels good to defray the moments others are in need.
LL
Somebody was not having a "quality" hospital experience and she had a very sick little CFer. In a way, advice on solving her problems led to a disconnect between what people thought she was asking for, advice or consolation, and it wasn't advice. Almost to the person men leaned toward advice and the ladies hit it like radar. It seems more people who want support or to rant are making that clear. I've learned to listen and to hear.
How often and how much I contribute depends a lot on my own joys of CF management. Being a scientist, I answer at length when someone has a question about CF medicine and such. We all could do better at connecting with fellow CFers in a low moment.
Thanks for the reminder that we are a family and it always feels good to defray the moments others are in need.
LL
mamaScarlett
Active member
Support is an EXTREMELY important part of Cf, and emotional health too. Since Cf is an isolating illness, its even more important. I believe for too long its been an overlooked aspect of Cf care.
I've been coming to this site for 10 yrs. When I come here, its not to get scientific recommendation. I leave that to my practitioners whom I have a long standing relationship with.
Its to learn what you can't learn in the clinic..what works for you, what hasn't worked, to hear inspiring stories and to inspire others.
For mental health, during a crisis ect, I turn to either my spouse or siblings, and to health providers. There are the day to day stresses of life with Cf (and life in general) that we all need support dealing with. And there are other critical times where real emotional help is needed and sometimes the best course is through your doctors or therapist. To turn to a web site or even a friend just isn't enough sometimes.
I've been coming to this site for 10 yrs. When I come here, its not to get scientific recommendation. I leave that to my practitioners whom I have a long standing relationship with.
Its to learn what you can't learn in the clinic..what works for you, what hasn't worked, to hear inspiring stories and to inspire others.
For mental health, during a crisis ect, I turn to either my spouse or siblings, and to health providers. There are the day to day stresses of life with Cf (and life in general) that we all need support dealing with. And there are other critical times where real emotional help is needed and sometimes the best course is through your doctors or therapist. To turn to a web site or even a friend just isn't enough sometimes.
C
Cardinal
Guest
I think it's a good idea to raise awareness of the fear and despair and need for support that surfaces on bulletin boards. It's important to respond to people. If we can all be better about that this year and ongoing it's a good thing.
It is motivating to anyone to come here to read... and provides motivation to work longer and harder and smarter. I love how patients share tips and tricks and remedies and make each other feel better. There is a huge amount of body wisdom that the patients themselves own. Scientists need to pay more attention to the patients and their observations.
It is motivating to anyone to come here to read... and provides motivation to work longer and harder and smarter. I love how patients share tips and tricks and remedies and make each other feel better. There is a huge amount of body wisdom that the patients themselves own. Scientists need to pay more attention to the patients and their observations.
believingjesus
Banned
I don't mean to step on anyone's toes or hurt any particular persons feelings by posting on this thread. I know this is not a perfect community and that it is online. I do so appreciate all the helpful advice and tips I have got on this forum. I know many, many people have found tremendous support on here which had to be so helpful in their life. I know many people have expressed fears and concerns and have had many people respond to them which I'm sure was such encouragement to them when they needed it. I don't want to spell out any certain persons on this forum or the fears or concerns or advice they were asking for but I am thinking of 2 in particular in the last week that barely got a response. I know many of you may not be going through their particular situation or facing the same thing they are facing but you can read it their words that they just wanted a friend or encouragement or needing to know they are cared about and just plain encouragement. It makes me very sad that some people can post on here and get little to no responses. Even if you are not going through what they are going through or have no helpful advice I feel words of encouragement or compassion are much needed. I do not understand how their posts can be read and nobody responds - just goes to the next thread.?! I honestly don't get it. These people are valuable and loved and may be in situations that they have too much to handle and just need a word of encouragement or hope or compassion. I am not perfect as everyone on here knows and I hope that I don't have to apologize for saying this and that I did not offend any of you kind folks out there. I, too, need the helpful advice and wisdom that you all out there have to help me in my everyday life too. I do not mean to offend anyone in particular at all. And, some of you out there ARE going through what they are going through and no responses. Even if you are not in their situation or having no advice on their situation, words of encouragement and understanding are always appreciated. And who knows that some of you may be in their particular situation someday or see a loved one in their situation. I know you would want this particular community to extend their love and support for you or your loved one then. I know I will probably take a bashing for this and I don't want anyone to think I am giving negativity. This statement may even be ignored which is fine as long as you all can try to include everyone that posts on here with support. I am not talking about myself in case it is not clear to any of you. I have not started any threads in the last week. It breaks my heart the pain and situations that some are in and I do not see how it is overlooked.
Dang! You testify, sister-girl! Seriously, I think you have very valid points "Believing". I think it draws attention to the fact that we are all struggling to some degree in our lives and it's tough. Sometimes it's hard to galvanize everyone on a particular subject like disability, SSDI, employment, etc. And that's really unfortunate. Some people rolls their eyes and yawn, yet it continues to affect each and every one of us, causing the very struggles we discuss. People just want to give up. But I do believe we all care about the subject as well as each other. Solving some of these problems it is the challenge. A kind word only goes so far.
Could we do a better job collectively? Darned right! And I think people really want to and care. Given the massive response of this post show that we all care. We should all try to stop, think and rally around fellow patients. Yes there is struggle and isolation. Sometimes we think nobody cares. Well of course we all care but we aren't always sure how to help. No one person can save the world but we can offer individual support. I've been beating a dead horse about disability and employment, while encouraging everyone to voice their opinions on this forum as well as at the Cystic Fibrosis Foundation. CFF needs to here our voices loud and clear, just as we all should let our voices be heard and responded to on this forum. Otherwise, how will we be able to help ourselves or how will CFF be able to help us in the future? It's academic. Common since. But...it takes a village.
As for those who are down and out, speak up. Tell us how you feel. Let us show you that we really care and want solutions. We struggle with you, sometimes in silence. But we all need to speak up and support each other, no matter how painful the situation. We are a very unique and small group of people. Those outside of CF don't care. It's all up to us. Okay, now I'm done testifying! After all, I'm preaching to the choir! Can I get a halleluiah? ;-)
Excellent post, "Believing".
Could we do a better job collectively? Darned right! And I think people really want to and care. Given the massive response of this post show that we all care. We should all try to stop, think and rally around fellow patients. Yes there is struggle and isolation. Sometimes we think nobody cares. Well of course we all care but we aren't always sure how to help. No one person can save the world but we can offer individual support. I've been beating a dead horse about disability and employment, while encouraging everyone to voice their opinions on this forum as well as at the Cystic Fibrosis Foundation. CFF needs to here our voices loud and clear, just as we all should let our voices be heard and responded to on this forum. Otherwise, how will we be able to help ourselves or how will CFF be able to help us in the future? It's academic. Common since. But...it takes a village.
As for those who are down and out, speak up. Tell us how you feel. Let us show you that we really care and want solutions. We struggle with you, sometimes in silence. But we all need to speak up and support each other, no matter how painful the situation. We are a very unique and small group of people. Those outside of CF don't care. It's all up to us. Okay, now I'm done testifying! After all, I'm preaching to the choir! Can I get a halleluiah? ;-)
Excellent post, "Believing".