Aa
Confused and Need Help
I am confused about the purpose of this site.
I was of the impression that the site existed to help people who are treating by offering support, a forum in which to ask questions of those who have had prior experience, share new information and find ways of solving problems related to tx together.
Yesterday I read that some folks do not think we should post the reality of our side effects or experiences (especially if they are unpleasant) as it may 'scare off' people who may be considering treatment.
And yet, on other occasions, I have read other folk complaining about how angry they were to have NOT been told about the reality of txing and what might happen to them.
I would like to hear back from people what their perception of the site is, and what their expectations are.
I would especially love to hear from newcomers as I am curious to know what has brought you here and what you are hoping to take away with you.
Btw, this post is in no way an attempt to stir trouble or controversy, it is a sincere quest for answers and truth.
Thank you all for your time.
Epi :)
PS: I am unsure what side to post this in so I am posting in both the get more responses.
I was of the impression that the site existed to help people who are treating by offering support, a forum in which to ask questions of those who have had prior experience, share new information and find ways of solving problems related to tx together.
Yesterday I read that some folks do not think we should post the reality of our side effects or experiences (especially if they are unpleasant) as it may 'scare off' people who may be considering treatment.
And yet, on other occasions, I have read other folk complaining about how angry they were to have NOT been told about the reality of txing and what might happen to them.
I would like to hear back from people what their perception of the site is, and what their expectations are.
I would especially love to hear from newcomers as I am curious to know what has brought you here and what you are hoping to take away with you.
Btw, this post is in no way an attempt to stir trouble or controversy, it is a sincere quest for answers and truth.
Thank you all for your time.
Epi :)
PS: I am unsure what side to post this in so I am posting in both the get more responses.
When I started coming to the site (months before I started posting) I avidly read every post and every journal I could. I was grateful to read people's experiences, especially the people that were having a difficult time, as they gave me hope that if they could overcome their difficulties so could I.
I wasn't interested in all the in-jokes and lovey-dovey, "you're my friend forever" posts as my emotional needs are taken care of in the real world. I just wanted the hard cold facts and info on what difficulties I might expect and how to handle them should they arise.
Forewarned is forearmed, knowledge is power.
This is my 2nd tx. On my first tx I was woefully under prepared, NO ONE had told me how bad it could get and I was completely taken by surprise. That experience was dreadful, and the fact it was a failed treatment made it even more so.
This time I had that prior experience to help me better prepare and it has been easier because of it. It has also been easier because I was able to read other people's stories, warts and all, on this site.
I wasn't interested in all the in-jokes and lovey-dovey, "you're my friend forever" posts as my emotional needs are taken care of in the real world. I just wanted the hard cold facts and info on what difficulties I might expect and how to handle them should they arise.
Forewarned is forearmed, knowledge is power.
This is my 2nd tx. On my first tx I was woefully under prepared, NO ONE had told me how bad it could get and I was completely taken by surprise. That experience was dreadful, and the fact it was a failed treatment made it even more so.
This time I had that prior experience to help me better prepare and it has been easier because of it. It has also been easier because I was able to read other people's stories, warts and all, on this site.
I will post side effects as i contiune my tx.....right noe im not having any sides at all...except very mild head aches..and i mean mild...i will not try to scare anyone either...i will not sugar coat my sides either.....i am im bed and cant move and all my hair falls out and i turn into a human toothpick....i will post it....
Why would anyone want to stay and open themselves up in the low point in their lives and be subject to a gang mentality which has played out here in the couple of last months? Do you really expect to get honest feed back on this?
jasper
jasper
I was truly hoping that if people were able to clearly define what they want out of the site it might be less likely to end up in such a mess.
This whole thing yesterday has broken my heart and my spirit for the site.
Am I just naive, maybe I am. Naive, hurt and disillusioned.
This whole thing yesterday has broken my heart and my spirit for the site.
Am I just naive, maybe I am. Naive, hurt and disillusioned.
there are still pleanty of good people here who will listen when someone needs it and give good info/advice also...most of us here know who they are....besides they don't attack everyone...They sort of ignore some of us.
At this point we should all ignore the hostility...then maybe it will go away.
Cut off the head and the snake will die.
At this point we should all ignore the hostility...then maybe it will go away.
Cut off the head and the snake will die.
I at this point do not want to comment anymore on what has happened, but I would like to look to the future.
The ideal for this site would be a place where people can gain knowledge and share knowledge, open up about their feelings, be comfortable to be who and how they are, get support and give support without judging and being judged.
We all know that a perfect world is an illusion, but at least we should all try to respect each other.
The ideal for this site would be a place where people can gain knowledge and share knowledge, open up about their feelings, be comfortable to be who and how they are, get support and give support without judging and being judged.
We all know that a perfect world is an illusion, but at least we should all try to respect each other.
Give me the cold hard facts, anytime.I am of the opinion that sugar coating anything in life, is not ultimately helpful or kind. To me, dealing with reality is much healthier.
I haven't posted much because there doesn't seem to be anything useful I can add to what is already here, but, opinions I have and this is one!
Cheers and good health wishes to all! ; >
I haven't posted much because there doesn't seem to be anything useful I can add to what is already here, but, opinions I have and this is one!
Cheers and good health wishes to all! ; >
Well said.
As a newbie, I can say my intention for visiting this forum is to gain knowledge on HCV and dealing with SX. If I can piggy back on others experiences it helps a lot as my own treatment moves forward and the SX creep up on me. Did I mention the itching? I want to hear about the good, the not so good and the the bad, it all helps. As an observation, I think we all know this, each of us deals with HCV and treatment differently, some breeze through it, others have a very diffucult time and others are some where in between. All should be respected. Also, lets not lose the humor, it can bring out a laugh or smile and it feels good! Just my two cents... Take care...
As a newbie, I can say my intention for visiting this forum is to gain knowledge on HCV and dealing with SX. If I can piggy back on others experiences it helps a lot as my own treatment moves forward and the SX creep up on me. Did I mention the itching? I want to hear about the good, the not so good and the the bad, it all helps. As an observation, I think we all know this, each of us deals with HCV and treatment differently, some breeze through it, others have a very diffucult time and others are some where in between. All should be respected. Also, lets not lose the humor, it can bring out a laugh or smile and it feels good! Just my two cents... Take care...
My impression of the purpose of this site, is the same as yours. I got on this site, as I was having a rather difficult time with the sides. Even though my friends and family tried to understand and be supportive, they really didn't get it. I NEEDED to hear from other people who had experienced the same, so I wouldn't feel like I was going through it alone, and also so I would feel like I would be ok. Of late there have been quite a few criticisms of people, that scares me. It makes me a little nervous to say too much in case someone tells me to "suck it up", or get over it. People in their most vulnerable state do not need to be criticized. I also know, others have it worse, I would not want anyone to use that to make me feel guilty.
I first came to this site over a year ago when I was diagnosed with Hep C and at that time I was scared, very overwhelmed, and just reading everything that I could trying to learn about the disease. In coming here I gained a lot of knowledge about the good, the bad, and the ugly of this treatment. When I decided that tx was the avenue I wanted to take I read everything I could about the side effects of the drugs and the best information that I found came from the personal experiences of the people on this site. Reading all of the horror stories did make me a little scared but in reality I was able to start treatment with my eyes wide open.
When I first started treatment I had terrible diarrhea and could have been alarmed but I had learned it was a normal sx by reading other peoples posts. At wk 2 or 3 my mouth became inflamed with awful sores but I knew that was a normal sx and already had special mouthwash in the medicine cabinet for when I needed it. At month 2 I had gotten to the point of where I was functioning on about 3 hrs of sleep a night, but because I knew that sleeplessness was a sx and had effected many other members of this forum I already had ambien in my cabinet waiting for me incase I needed it. The magic mouthwash and the ambien are 2 things my GI did not think to give me, but I knew to ask from them b/c of the posts that I read.
I could go on and on about how people posting their experiences with tx has made me more prepared and more in charge of my own tx. I am able to go in and talk to my Dr as a well-informed patient who’s not afraid to disagree and he respects me for it.
I consider myself very lucky to have found this site and I am thankful for the people posting all of their experiences.
Ann
When I first started treatment I had terrible diarrhea and could have been alarmed but I had learned it was a normal sx by reading other peoples posts. At wk 2 or 3 my mouth became inflamed with awful sores but I knew that was a normal sx and already had special mouthwash in the medicine cabinet for when I needed it. At month 2 I had gotten to the point of where I was functioning on about 3 hrs of sleep a night, but because I knew that sleeplessness was a sx and had effected many other members of this forum I already had ambien in my cabinet waiting for me incase I needed it. The magic mouthwash and the ambien are 2 things my GI did not think to give me, but I knew to ask from them b/c of the posts that I read.
I could go on and on about how people posting their experiences with tx has made me more prepared and more in charge of my own tx. I am able to go in and talk to my Dr as a well-informed patient who’s not afraid to disagree and he respects me for it.
I consider myself very lucky to have found this site and I am thankful for the people posting all of their experiences.
Ann
I was dx'ed about two years ago & this site was one of the first I came to to read about people's experiences w/the disease. As a newbie, I gained the most insight from the "Recently diagnosed, what now?" type of posts. Since I knew I wasn't going to tx, and still am not, I pass up a lot of the posts about tx, but do like to read a few here & there as time permits. The first few months after diagnosis were the worst, I was like a zombie, and remember being on the internet & this site every day, for hours on end. Now I check in maybe once or twice a week & use it to fill in the blanks, so to speak, when I have a nagging issue or question on my mind. I haven't read here the last few days, so am kind of puzzled as to the bugaboo/brouhaha that went on; I guess it's been taken care of.
Yes, it is in the process of being taken care of and hopefully forever. The first steps have been taken by NYgirl and I and I hope that everyone else will follow.
Hepatitis Social Community: This forum is for questions about medical issues and research aspects of Hepatitis such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you have a medical question, comment or research study pertaining to Hepatitis, please post it in our Hepatitis Forum
MedHelp's version but we all know its much more than that. I don't like what it's turned into. "Social" gives way to too much leeway on the part some. It's all relative, each person thinks they are entitled so this would be a very difficult and tedious subject with varied opinions and no resolution. There's always the other forum which is why I stay there most of the time.
Trinity
MedHelp's version but we all know its much more than that. I don't like what it's turned into. "Social" gives way to too much leeway on the part some. It's all relative, each person thinks they are entitled so this would be a very difficult and tedious subject with varied opinions and no resolution. There's always the other forum which is why I stay there most of the time.
Trinity
What we are all seeing on the site recently is transitory. I have watches the forum for many years and it constantly changes.
Many of us that treat experience difficult psychological problems that make us impulsive and sometimes angry -- that is angrier than we would normally be. I believe that much of the recent fighting is a result of the drugs impacting us far more than we realize.
I am sure that next year will be different, since the forum has constantly changed over the years and shows of stabilizing.
I am hopeful that it will be a change for the better. The only thing I am sure of is that it will be different. People stop treating, other people start, new people join and others leave. There is constant change and hopefully, some of us old timers can learn from our mistakes.
Eric
Many of us that treat experience difficult psychological problems that make us impulsive and sometimes angry -- that is angrier than we would normally be. I believe that much of the recent fighting is a result of the drugs impacting us far more than we realize.
I am sure that next year will be different, since the forum has constantly changed over the years and shows of stabilizing.
I am hopeful that it will be a change for the better. The only thing I am sure of is that it will be different. People stop treating, other people start, new people join and others leave. There is constant change and hopefully, some of us old timers can learn from our mistakes.
Eric
I didn't answer the question posed by epiphany so her goes: I came here to find the state of the art treatments. The forum was very different many years ago. It had no social side to it and threads were more technical.
I used it to find a doctor that believed in protease inhibitors and was influential enough to get selected for trials. I know that I did not have enough time to wait for new drugs to become available to the general public.
I succeeded in finding a great doctor, got into the trial with the best drug at the time and now I am SVR after twenty years of constantly battling the dragon.
So this forum is great. It now has a social side to it and I think that is great as well. I suffered from depression all my life and adding interferon into the mix really put me over the top. Reading other peoples descriptions of their problems made me feel that I was not alone. I have a loving wife and a great family, but they have no idea what I went through. You all do.
Eric
I used it to find a doctor that believed in protease inhibitors and was influential enough to get selected for trials. I know that I did not have enough time to wait for new drugs to become available to the general public.
I succeeded in finding a great doctor, got into the trial with the best drug at the time and now I am SVR after twenty years of constantly battling the dragon.
So this forum is great. It now has a social side to it and I think that is great as well. I suffered from depression all my life and adding interferon into the mix really put me over the top. Reading other peoples descriptions of their problems made me feel that I was not alone. I have a loving wife and a great family, but they have no idea what I went through. You all do.
Eric
I should add that by this sentence "You all do, " I really meant all, not just people that have treated. Anyone that puts time in reading all the outpouring of emotion and descriptions of our feeling gets a great understanding of what it means to treat.
I think we ALL need words of support, that's for sure...
Yes, I do gets lots of emotional support in my real world BUT there is that tiny yet significant difference of being in a place where people "get" what you are going through in a way that our nearest and dearest can't grasp, not because they lack compassion, but because they haven't walked in these shoes...
With this thread I was just trying to get to the grass roots of why I started coming here and why I continue to come here, and I was curious to know why others do as well.
There's no doubt, this forum is invaluable, it has helped me immeasurably, and while I didn't come looking for friends or a social group I have met some cool people as I've walked the boards.
I still consider myself a newbie and I'm trying to get a perspective on things, and I'm the kind of person that likes to "talk" things through. It's been really great to hear other people's idea and opinions about the site's purpose, especially people we don't hear from often, for whatever reason.
So it seems that we all pretty much come here for the same reason, which is very reassuring, and sometimes it's helpful to remind ourselves of those reasons, yes?
Personally, I love the medical talk and problem solving best and I really love to be able to help someone who is having a difficult time. That makes my journey easier and takes myself away from my troubles.
It's human symbiosis in action!
Yes, I do gets lots of emotional support in my real world BUT there is that tiny yet significant difference of being in a place where people "get" what you are going through in a way that our nearest and dearest can't grasp, not because they lack compassion, but because they haven't walked in these shoes...
With this thread I was just trying to get to the grass roots of why I started coming here and why I continue to come here, and I was curious to know why others do as well.
There's no doubt, this forum is invaluable, it has helped me immeasurably, and while I didn't come looking for friends or a social group I have met some cool people as I've walked the boards.
I still consider myself a newbie and I'm trying to get a perspective on things, and I'm the kind of person that likes to "talk" things through. It's been really great to hear other people's idea and opinions about the site's purpose, especially people we don't hear from often, for whatever reason.
So it seems that we all pretty much come here for the same reason, which is very reassuring, and sometimes it's helpful to remind ourselves of those reasons, yes?
Personally, I love the medical talk and problem solving best and I really love to be able to help someone who is having a difficult time. That makes my journey easier and takes myself away from my troubles.
It's human symbiosis in action!
Marcia,
Ca posts is fine and very true. MedHelp has not given you the job of moderator and you should not tell people to remove their post. We are adults.
Ca posts is fine and very true. MedHelp has not given you the job of moderator and you should not tell people to remove their post. We are adults.
There will always be someone here to answer your questions. Sometimes people disagree and you learn just to stay away till it quiets down again. Its unfortunate but true.
But regardless of personalities on this forum please know there are always a bunch of very good people to help you no matter what the question is.
Its a great forum if it werent for this place and the people that have helped I dont know what I would have done, since I did go thru the tx alone.
Good Luck
Charm
But regardless of personalities on this forum please know there are always a bunch of very good people to help you no matter what the question is.
Its a great forum if it werent for this place and the people that have helped I dont know what I would have done, since I did go thru the tx alone.
Good Luck
Charm
Tis the season to be jolly,
Fa la la la la, la la la la.
Don we now our gay apparel,
Fa la la, la la la, la la la. (I never really understood that part)
Fa la la la la, la la la la.
Don we now our gay apparel,
Fa la la, la la la, la la la. (I never really understood that part)
epi: On my first tx I was woefully under prepared, NO ONE had told me how bad it could get and I was completely taken by surprise.
------------------
Sorry you had such a bad time.
I guess you missed the numerous times I posted a list of previous posts regarding side effects both during and post treatment. I've invited others to post this list -- and expand upon it -- but so far I'm the only one who posts it and frankly it would be nice if those like minded did a little heavy lifting on this. So if you reallly feel people aren't telling the whole story -- and many here -- both publically and privately -- have stated they don't post negative stories becuase they don't want to discourage people -- then why don't you at least post the list when relevant in the future.
Here it is:
http://www.medhelp.org/posts/show/286686
http://www.medhelp.org/posts/show/286686
http://www.medhelp.org/forums/Hepatitis-Community/messages/965.html
http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html
http://www.medhelp.org/forums/Hepatitis/messages/45385.html
http://www.medhelp.org/forums/Hepatitis/messages/45437.html
http://www.medhelp.org/forums/Hepatitis/messages/45337.html
http://www.medhelp.org/forums/Hepatitis/messages/46376.html http://www.medhelp.org/forums/Hepatitis/messages/46380.html
http://www.medhelp.org/posts/show/303629
BTW the above threads, which may be construed disturbing by some as to the extent of the side effects noted -- represent statments of people both pro and con treatment, people who have had an easy time as well as a hard time treating. They are simply snap shots in time of MH members and the side effects they report both on and post treatment.
Many will make the argument that they are not representative because people who don't have side effects don't post in forums like this. On the other hand, as stated, I've heard many say the opposite -- that they don't post negative side effects for fear of discouraging people from treatment. My opinion is that it's a wash and these threads are representative of what someone could expect on treatment or after.
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