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Oldtimers Need The Forum Too
It was brought up again yesterday that some people believe that the forum is really only for people currently treating so I thought I would explain why it is that alot of us old timers are still here and why we need the friendship and commraderie too.
Aside from the fact that indeed if the old timers did not post there would be nobody here to learn from, no one to ask questions to and expect an answer that you can trust, nobody to delve deeply into studies and explain in plain old simple English what they actually mean (I can never read that scientific mumbo jumbo)...
You see treatment might seem to be the end of the world but honestly, mostly, it is just an inconvenience compared to other things in life. You see treatment has a start date and an end date and you CAN if you are lucky beat this disease and then it is over. For others though - they need this forum because they have already treated but it did not work and they continue on again bravely fighting for their lives. They NEED to be here often times more than a new person starting out because they know how vicious the gamble can be and they have so much more riding on it because they know what it feels like to really relapse.
Over the course of my own personal treatment the friends here became as important as the knowledge that was given. When I was in fear of losing my job because I was so ill (like when my hemo went down 6 points in only ten days), it was the folks in here that I could talk with about it - who understood exactly what that felt like and were able to relate their stories to me to calm me down and give me hope that it would get better. People in my every day life could not understand what it was like waiting for the Procrit to work, but the guys in here - they sure did. When I had just finished treatment and woke up to find police banging on my door and then seeing my husband hanging dead on my front porch - it wasn't something I really wanted to talk about very much but again, the people in here let me cry and vent and never judged or were nosey - just supportive and understanding. My friends in here helped me to calm down enough so that I could help my children - my children who just watched their mother pretending she was fine for two years and pretending that treatment was really no big deal so that I could protect them from the worry that I was going to die, just like any good mother will do. But of course as hard as I tried they always thought that I would. Then their father did. So not fair. I could go on about tx bad luck and post tx bad luck all day but you get the gist.
The forum also gave me a place where I could feel useful during the dark times. A place where I could give back what I had received. Where I could feel that I was helping someone else walk through the treacherous jungle that treatment really seems to be when you are new.
So why are we oldtimers still in need of this place? Because as horrible as treatment might seem to be at the time - you can put it into a box and move on but life continues onwards. Post treatment illness can be more devastating than the treatment itself. Who if not the people in here understand what that is like?
So forget all about the fact that we come in here to help - we do. But there is so much more.
I hope this might bring some understanding to the situation and we don't ever have to hear that we're not as important as people currently on treatment. We are.
Debby
Aside from the fact that indeed if the old timers did not post there would be nobody here to learn from, no one to ask questions to and expect an answer that you can trust, nobody to delve deeply into studies and explain in plain old simple English what they actually mean (I can never read that scientific mumbo jumbo)...
You see treatment might seem to be the end of the world but honestly, mostly, it is just an inconvenience compared to other things in life. You see treatment has a start date and an end date and you CAN if you are lucky beat this disease and then it is over. For others though - they need this forum because they have already treated but it did not work and they continue on again bravely fighting for their lives. They NEED to be here often times more than a new person starting out because they know how vicious the gamble can be and they have so much more riding on it because they know what it feels like to really relapse.
Over the course of my own personal treatment the friends here became as important as the knowledge that was given. When I was in fear of losing my job because I was so ill (like when my hemo went down 6 points in only ten days), it was the folks in here that I could talk with about it - who understood exactly what that felt like and were able to relate their stories to me to calm me down and give me hope that it would get better. People in my every day life could not understand what it was like waiting for the Procrit to work, but the guys in here - they sure did. When I had just finished treatment and woke up to find police banging on my door and then seeing my husband hanging dead on my front porch - it wasn't something I really wanted to talk about very much but again, the people in here let me cry and vent and never judged or were nosey - just supportive and understanding. My friends in here helped me to calm down enough so that I could help my children - my children who just watched their mother pretending she was fine for two years and pretending that treatment was really no big deal so that I could protect them from the worry that I was going to die, just like any good mother will do. But of course as hard as I tried they always thought that I would. Then their father did. So not fair. I could go on about tx bad luck and post tx bad luck all day but you get the gist.
The forum also gave me a place where I could feel useful during the dark times. A place where I could give back what I had received. Where I could feel that I was helping someone else walk through the treacherous jungle that treatment really seems to be when you are new.
So why are we oldtimers still in need of this place? Because as horrible as treatment might seem to be at the time - you can put it into a box and move on but life continues onwards. Post treatment illness can be more devastating than the treatment itself. Who if not the people in here understand what that is like?
So forget all about the fact that we come in here to help - we do. But there is so much more.
I hope this might bring some understanding to the situation and we don't ever have to hear that we're not as important as people currently on treatment. We are.
Debby
The Old-Timers and The Newbies: we are like the Yin and the Yang~ we fit together perfectly xoxoxoxo
Wow....what a reminder of treating. I guess I was feeling riba-sassy when I went off on the moderator, lol!
TImeless, Deb!! Nice job-as per usual!
Good to see you, Susan. Thought of you today when I spoke to "our nurse" at Mayo. Hope you're doing well.
Izzy
TImeless, Deb!! Nice job-as per usual!
Good to see you, Susan. Thought of you today when I spoke to "our nurse" at Mayo. Hope you're doing well.
Izzy
Please don't take this wrong, I don't want to sound selfish.. But, after years of being on here constantly and feeling like my whole life was about Hep C, for my own mental health, I had to step back from here. Maybe if I had cleared the virus after 2 or 3 TX's, I'd have a different mindset. Or maybe if I wasn't in this constant state of limbo-not getting any worse, but not ever clearing..., then, I'd feel like I had something of value to offer here. I do come on here and post from time to time, but not as much as in the past. It's just too hard. But, I think of you all often and worry about my friends who haven't cleared.
Susan400
Susan400
yeah... this is a good reminder and a great thread to "revive" occasionally. Debby and others were our beacon when we started tx after FDA approval of inhibbies in 2011. They were the ones who proved we could survive and gave a plethora of support and advice.
It feels kind of good now. I consider myself an old timer even though I just hit 6 mos SVR. I am still dealing with stage 4 cirrhossis as a result of hep c and love the cirrhossis forum, but need to hear from my buddies who are tx survivors as we continue to deal with the aftermath of the virus. Unfortunately, it's part of who we are, even after SVR. I'm glad to see the newbies slaying the dragon as well. This is a strong, compassionate place to be for anyone at any stage of living with hep c and it's aftermath.
xo Karen :)
It feels kind of good now. I consider myself an old timer even though I just hit 6 mos SVR. I am still dealing with stage 4 cirrhossis as a result of hep c and love the cirrhossis forum, but need to hear from my buddies who are tx survivors as we continue to deal with the aftermath of the virus. Unfortunately, it's part of who we are, even after SVR. I'm glad to see the newbies slaying the dragon as well. This is a strong, compassionate place to be for anyone at any stage of living with hep c and it's aftermath.
xo Karen :)
Great post Cin. Imagine - you dont need to test anymore you know. You have SVR it aint going anywhere! :)
Hello everyone, great to see some us oldies on here. Have not been on for while. Hope all is well. Hubby and I finished tx in 2007 and we were both recently told 5 yrs SVR which is great. I still have some long term effects from tx (unless its just age) but nothing I can't handle. Hubby doesn't have any. We were lucky we did not have many problems on tx. I think treating together kept us both going. Hope all is well and to the newbies that might read this, stay calm and focused and you will get through this.
6 weeks into tx dont know if i can finish 6 months genotype2 i am miserable started procrit last week i am new to this sharing dont get on computer much
From now on I will keep my lips closed after reading what this was all about . Going about my business .
Hi Denise-
Thanks for the links. My impression (perhaps it is flawed) is that this forum works quite, is general positive (not always) and there is a lot of mutual respect between all of us regardless of when we joined. It seems like about 99 percent of the time experience is respected. Whenever you get a bunch of people together online or for in person, somebody is bound to rub someone else the wrong way.
- Dave
Thanks for the links. My impression (perhaps it is flawed) is that this forum works quite, is general positive (not always) and there is a lot of mutual respect between all of us regardless of when we joined. It seems like about 99 percent of the time experience is respected. Whenever you get a bunch of people together online or for in person, somebody is bound to rub someone else the wrong way.
- Dave
don't have much time right now but it very well could have been this thread:
http://www.medhelp.org/posts/Hepatitis-Social/An-Honest-Question/show/1266314?personal_page_id=1164125#post_5801778
Denise
http://www.medhelp.org/posts/Hepatitis-Social/An-Honest-Question/show/1266314?personal_page_id=1164125#post_5801778
Denise
I'm not NYgirl but I think you will find the answer to your question (who would post that the forum is for current treaters) here:
http://www.medhelp.org/posts/Hepatitis-C/According-to-Wikipedia--the-definition-of-chemotherapy-is/show/1271106#post_5824120
Denise
http://www.medhelp.org/posts/Hepatitis-C/According-to-Wikipedia--the-definition-of-chemotherapy-is/show/1271106#post_5824120
Denise
IF it wasn't for the ole timer's Why do I feel bad when I stay away to long ?
Because of the help they have given me and so many others .I can't beleive anyone would say such a thing and truely , honestly be able to say it on here . A true person that helps others is like gold ... You don't consider yourself rich by the money you have but by the friends you keep . If I stay away a year and come back it's always the warm welcoming ole timers you can TRUST that always welcome you back with open arms and IF you don't know the answers to all the questions , ask .They all explain to each and everyone they are not Drs., but experience does help in this so called experience of disease that we have , or had or are still battling .
I'm sorry Deb that someone could make you feel like you did ... I just want to say , Thank you very much for being here for me and others and it REALLY doesn't matter what one person thinks , verses what many friends FEEL ! Your awesome ...
P.S. I am gonna make T-Shirts . Get the over it ! Not meant for you :)
Because of the help they have given me and so many others .I can't beleive anyone would say such a thing and truely , honestly be able to say it on here . A true person that helps others is like gold ... You don't consider yourself rich by the money you have but by the friends you keep . If I stay away a year and come back it's always the warm welcoming ole timers you can TRUST that always welcome you back with open arms and IF you don't know the answers to all the questions , ask .They all explain to each and everyone they are not Drs., but experience does help in this so called experience of disease that we have , or had or are still battling .
I'm sorry Deb that someone could make you feel like you did ... I just want to say , Thank you very much for being here for me and others and it REALLY doesn't matter what one person thinks , verses what many friends FEEL ! Your awesome ...
P.S. I am gonna make T-Shirts . Get the over it ! Not meant for you :)
I am surprised actually to hear that some actually said " the forum is really only for people currently treating" I guess people say all sorts of things.
I believe generally there is mutual respect on the forum for all contributors regardless of whether they have been part of the forum for a long time or not. Of course there are also many people that have not been part of the forum, that have spent a lot of their time educating themselves about the disease.
Many of you old timers have formed a bond over the years of communicating with each other and have gotten to know each other well. There is no replacement for old, tried and true friends!
I believe generally there is mutual respect on the forum for all contributors regardless of whether they have been part of the forum for a long time or not. Of course there are also many people that have not been part of the forum, that have spent a lot of their time educating themselves about the disease.
Many of you old timers have formed a bond over the years of communicating with each other and have gotten to know each other well. There is no replacement for old, tried and true friends!
Oldtimer rock! Always have... there is nothing much more to say, the fact speaks for itself!
Love you guys!
Love you guys!
You old timers are what we are here for. When I recently knew that it was time to treat, much of the questions or searches I entered in google kept bringing me here. People support each other through treatment and are supported and advised by the old timers. The board just perpetuates itself with new teachers and new students.
I believe that those of us that are new to treatment or those that are newly diagnosed are looking for guidance from you, and you are well respected and appreciated. I know that I feel that way. I have tried to stay well informed over the years since diagnoses, but the wealth of information, support and friendship have been invaluable here.
Thank you all!
Dave
I believe that those of us that are new to treatment or those that are newly diagnosed are looking for guidance from you, and you are well respected and appreciated. I know that I feel that way. I have tried to stay well informed over the years since diagnoses, but the wealth of information, support and friendship have been invaluable here.
Thank you all!
Dave
This is pretty nifty. It's like old home week on this thread. And look at all the SVR's, how cool is that.
♫ Where have all the oldtimers gone, long time passing ♫
♫ Where have all the oldtimers gone, long time passing ♫
parden my bad english it probably should read" is to realise one really don´t know anything
at all".
at all".
The highest kind of knowledge anyone can reach to is to realise you really don´t know anything at all.
How can anybody blame anyone for wanting to share that!!
ca
How can anybody blame anyone for wanting to share that!!
ca
Not a good business, rabbits. Usually you can only sell two. There's no tail, and that ain't good.
Goofy - It's been so long since I've managed to sell a chicken I'd probably screw up and ship rabbits instead ;)
NYGirl - It's like coming home. I oughta do it more often :)
NYGirl - It's like coming home. I oughta do it more often :)
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