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.
SQ I thought that was Spock? lol kidding! Honestly I think you just need to take things as they are, find the folks who support you, the ones that share it with you.
Sometimes it will come from the forum, other times privately. Sometimes it is hard to do but ignore those who hurt you. Susan said it so well, She is a hero, 9 times!
Till you decide who in this forum is real and has the best interests of everyone, it will be confusing. we are all sick, in different ways at different times, Post when and what you need to my friend, because one thing I can promise you, when you need help, we will be here, No matter what,
Sunqueen I want first lady cookies!
I just have to make it through Christmas, then probably back to hospital for transfusions.
Oh well, persevere!
Sometimes it will come from the forum, other times privately. Sometimes it is hard to do but ignore those who hurt you. Susan said it so well, She is a hero, 9 times!
Till you decide who in this forum is real and has the best interests of everyone, it will be confusing. we are all sick, in different ways at different times, Post when and what you need to my friend, because one thing I can promise you, when you need help, we will be here, No matter what,
Sunqueen I want first lady cookies!
I just have to make it through Christmas, then probably back to hospital for transfusions.
Oh well, persevere!
Hugs to you too Deb! Sorry you're not feeling well :~(
Epi - Sorry about your mum. My friend had the resection too.
I know this tx and illness is very serious stuff and I feel like I'm insensitive and negate people's experiences when I make jokes about it. I love what Eric said about having outside support and a loving family, but that they don't get what we go through, and all of you do. I think your question is an important one Epi because it puts things in a context. How do I feel about my own tx and sx? How do I feel when others talk about what they go through? How do the people who have been here forever still manage to answer the same questions over and over when a newbie comes in? How are we expected to behave towards each other when the tough issues are asked?
The forum tends to take on a utilitarian approach to most matters, or, as the great philosopher Spock once said "... logic clearly dictates that the needs of the many outweigh the needs of the few"
At least that's the sense I get.
Epi - Sorry about your mum. My friend had the resection too.
I know this tx and illness is very serious stuff and I feel like I'm insensitive and negate people's experiences when I make jokes about it. I love what Eric said about having outside support and a loving family, but that they don't get what we go through, and all of you do. I think your question is an important one Epi because it puts things in a context. How do I feel about my own tx and sx? How do I feel when others talk about what they go through? How do the people who have been here forever still manage to answer the same questions over and over when a newbie comes in? How are we expected to behave towards each other when the tough issues are asked?
The forum tends to take on a utilitarian approach to most matters, or, as the great philosopher Spock once said "... logic clearly dictates that the needs of the many outweigh the needs of the few"
At least that's the sense I get.
Sorry to jump in with a non-answer! I was intriqued by the question, curious as to what comment or comments sparked the query, and by the time I got to Susans post I got sidetracked. My ADD brain is always the culprit of impusilve writing.
Plus, this is my brain on steroids. I had to get a shot today to open up my lungs and now I'm more sleepless than usual.
Gives me time to read on the forum and post impulsively:)
Bug
Plus, this is my brain on steroids. I had to get a shot today to open up my lungs and now I'm more sleepless than usual.
Gives me time to read on the forum and post impulsively:)
Bug
You really ARE a nice person.
I think most of the time people are trying to be supportive and nice, but we're human and sometimes things "rub" us the wrong way. (speaking for myself as it's all about me, right?)
I cringe when I think of someof the things that I reacted stupidly to.
Bug
I think most of the time people are trying to be supportive and nice, but we're human and sometimes things "rub" us the wrong way. (speaking for myself as it's all about me, right?)
I cringe when I think of someof the things that I reacted stupidly to.
Bug
I hear ya! Sorry that my post came across as a criticism, didn't mean it that way.
I have been incredibly happy with all the responses I have had to any of my questions and journal entries and I find this place a godsend, witnessed by how many times a day I check in!
I consider myself a relative newcomer and this thread is more about me trying to understand the dynamics, expectations and boundaries of the site so that I/we can get the most out of it....
The input has been great to this thread and I've learned/still learning heaps each time someone posts, so thanks all.
Epi :)
I have been incredibly happy with all the responses I have had to any of my questions and journal entries and I find this place a godsend, witnessed by how many times a day I check in!
I consider myself a relative newcomer and this thread is more about me trying to understand the dynamics, expectations and boundaries of the site so that I/we can get the most out of it....
The input has been great to this thread and I've learned/still learning heaps each time someone posts, so thanks all.
Epi :)
I've treated 10 times and I can honestly say that every treatment had it's moments of sheer agony, feeling like I was hating life, etc. And there were also some periods of time during the treatments where I felt like I was having a really good day with no sides. It was really bad for me depression-wise when I always got the news that I had not cleared yet again, but thanks to the Good Lord in whom I believe, he picked me up yet again by my bootstraps, dusted me off and put me right back on track again. I've had my moments on here, where I was grouchy and irritable and I'm sure that I offended some people and then, I feel like I've given some good encouragement to people as well. I'm sorry that it feels like we're not interested in hearing about your sides, I can speak for myself (and some of the others here) that we all care about those who post and try our best to offer what support we can. There's the rare individual who, for what ever reason, will reply in a not so nice fashion, but perhaps they're having a bad side day themselves.
Susan400
Susan400
Sorry to hear you are not feeling well. I hope that you will feel better, especially for the holidays!
Best wishes, Marcia
Best wishes, Marcia
Sending you hugs SQ and Epi, not feeling so great, but wanted to wish all a Happy Holidays!
My Mum also had Crohn's but unfortunately it was diagnosed too late and she had to eventually have her bowel removed.
We also had some difficult times when she would have an attack and it wasn't until we all learned to laugh about it together that she was able to accept where she was at.
Laughter is certainly the best medicine, thanks for you post.
Epi :)
We also had some difficult times when she would have an attack and it wasn't until we all learned to laugh about it together that she was able to accept where she was at.
Laughter is certainly the best medicine, thanks for you post.
Epi :)
:-D
One of my best friends in the world was diagnosed with Crohn's in the 80s. Every time she had an attack in public, she would be completely mortified, shamed and humiliated. My heart hurt for her. For Chanukah, I bought her a children's book called "Everyone Poops." We read it and we laughed until we cried.
I didn't have any humor for the longest time after my dx last year. In a strange twist of irony, I had to go see an ES HCV patient about 2 weeks after I found out I had it. I asked her if she treated and learned that she was pulled because of sx. Her husband got through and was SVR. I was so upset that I made that my last visit of the day. My RN friends said "OMG - don't do it! The treatment is worse than the disease!" Well, they weren't in my body. I was scared by most of the things I read and resolved to shut up and do it.
I didn't find my humor too well until the toilet sx kicked in. We have one bathroom in my small humble cottage. You have no choice but to laugh when you walk into a room and people have their shirts pulled up over their face.
One of my best friends in the world was diagnosed with Crohn's in the 80s. Every time she had an attack in public, she would be completely mortified, shamed and humiliated. My heart hurt for her. For Chanukah, I bought her a children's book called "Everyone Poops." We read it and we laughed until we cried.
I didn't have any humor for the longest time after my dx last year. In a strange twist of irony, I had to go see an ES HCV patient about 2 weeks after I found out I had it. I asked her if she treated and learned that she was pulled because of sx. Her husband got through and was SVR. I was so upset that I made that my last visit of the day. My RN friends said "OMG - don't do it! The treatment is worse than the disease!" Well, they weren't in my body. I was scared by most of the things I read and resolved to shut up and do it.
I didn't find my humor too well until the toilet sx kicked in. We have one bathroom in my small humble cottage. You have no choice but to laugh when you walk into a room and people have their shirts pulled up over their face.
just wanted to say that my son is doing better. It looks like it was myalgia induced by a fever after having had his wisdom tooth operated. He had spasms, cramping and other symptoms similar to dengue and chungunya (both spread by tropical mozzies) He has to check again for dengue fever on Wednesday, to rule it out a second time.
I had looked at this site and others in years past, when I was basically in denial about my Hep C, and I found what I read on them about sx and tx a bit disturbing. Working in healthcare, I've also been responsible for the care of people with cirrhosis and endstage liver disease. Although I haven't had friends or relatives who've died of it, I've seen plenty, and it scared the **** out of me. And I couldn't really talk to anyone (colleagues, especially) about my feelings, because there were few who knew I had HCV. So my fears stayed inside and I was seldom unaware that I have this virus, though I chose not to act on it. I was really afraid of tx, since I've had a long hx of depression.
The events in my life recently led me to begin tx, and it all happened rather quickly. By reading this site, I felt prepared for the possibilities, and very clear in the understanding that we all experience tx in our own way, that there are many variations in our individual experiences.
In my first weeks of tx, as I began to feel the effects of the drugs and the impact on my life, I chose this site as a place of support. I didn't actually post till my 4th week of tx, when things were getting especially challenging, and the feedback I got from others was tremendous! I cherish some of the things that were written to me, and I am so grateful that someone on this site helped me to rediscover my sense of humor, which I find to be invaluable at this time.
This first post made me feel like I'd found my tribe, people who totally understand what I'm going through, who can give tips on dealing with sides, direct me to research, share their own experience, or just bolster me up when that's what I need. My mood was considerably lifted that weekend, when I felt like SOMEONE (or many someones) understood my experience. So I keep coming back, checking the site frequently most days. I've made some personal connections, which is also very supportive right now. Does the value of this site come through in my writing? I honestly don't know what I'd do without you guys. I am filled with gratitude; it goes well with the drugs!!! : )
The events in my life recently led me to begin tx, and it all happened rather quickly. By reading this site, I felt prepared for the possibilities, and very clear in the understanding that we all experience tx in our own way, that there are many variations in our individual experiences.
In my first weeks of tx, as I began to feel the effects of the drugs and the impact on my life, I chose this site as a place of support. I didn't actually post till my 4th week of tx, when things were getting especially challenging, and the feedback I got from others was tremendous! I cherish some of the things that were written to me, and I am so grateful that someone on this site helped me to rediscover my sense of humor, which I find to be invaluable at this time.
This first post made me feel like I'd found my tribe, people who totally understand what I'm going through, who can give tips on dealing with sides, direct me to research, share their own experience, or just bolster me up when that's what I need. My mood was considerably lifted that weekend, when I felt like SOMEONE (or many someones) understood my experience. So I keep coming back, checking the site frequently most days. I've made some personal connections, which is also very supportive right now. Does the value of this site come through in my writing? I honestly don't know what I'd do without you guys. I am filled with gratitude; it goes well with the drugs!!! : )
Come on, now guys, don't you know that the word "gay" used to mean "Joyous and lively; merry, bright; brilliant, as in "gay colors." Funny aside, there is a children's summer camp in NC mountains, once it was called "Gay Valley." It's a working farm, where children get to experience simple country pleasures like shucking corn, fishing for trout. Anyway, in recent years they "had" to change the name, they changed it to "Gwynn Valley."
I'll be donning my gay apparel soon...
Merry Christmas, everyone! Happy Holidays!
I'll be donning my gay apparel soon...
Merry Christmas, everyone! Happy Holidays!
Now you’ve got me wandering if my wife made that part of the song up just to watch me try her clothes on.
R Glass.........Don we now our gay apparel
Well you could have knocked me over with a feather, But hey if Mrs. Glass don't mind, enjoy.
BTW, before the P.C. police come after be......... JUST KIDDNG
Well you could have knocked me over with a feather, But hey if Mrs. Glass don't mind, enjoy.
BTW, before the P.C. police come after be......... JUST KIDDNG
My quote from Epi in the post above was extracted from an almost identical post of hers on the same subject over in the other forum.
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.
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)
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
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.
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!
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