People We Answer...That Never Come Back

[NYgirl]

On a slow lazy Sunday I'm sitting here wondering...

What happens to the people who come on and are frantic...and then we answer to the best of our ability and they never come back on.

It really bothers me that we don't know what happens - but do you think there is any possibility we give some people TOO MUCH input on their first try or something?

Do you think maybe we should just be more supportive until they ASK specific questions?

I know we all try so hard to inpart to them what we have learned - and some of us, the one's who are still here I guess - it was exactly what WE wanted and needed.

I'm just really trying to figure out if perhaps in any way we are approaching this from the wrong point or something.

Any input?

I just feel bad - I don't know what else to do to try and help them but I hope they found another place to talk, I really do.

[jmjm530]

You raise a very good point. Some are obviously seeking information/answers but maybe others just neeed more emotional support.

But also, I think we have to keep in mind that MH isn't an end destination for a lot of folks like it is for many of us. People new and confused (I think that is synonmyous :) often google their way here, ask a question, google their way someplace, else, etc., and maybe along the way get what they want and don't come back. Lord knows I've done that before with other discussion groups on other topics.

But again, you do have a good point. I don't imagine every new Joe or Jill is ready to handle one of our "treat or not treat" debates,  for example.  H*ll, I can't even handle it sometimes :) Something to think about the next time someone new shows up.

-- Jim

[Algernon]

I think you raise a really good point.  That whole exchange about whether wklaw shoud treat or not made me have second thoughts about whether I should be treating.  A little late for that considering that I'm already starting to look like a giant uncooked Tyson chicken breast (and I don't mean that in a good way--in fact I wouldn't be surprised if they use some of the same chemicas on those chickens that we're using...).

On the other hand, a real debate about all the issues is probably what most people are looking for.  I wish that I'd been on this site before I ever started treatment.

On balance, it seems to me like most people on this site are really good about qualifying their responses.  I find everyone's comments to be helpful even when they freak me out a little (cheap thrills).

[can-do-man]

Good question girl. I think for the most part the answers that are given is what their asking us for.

And i think jim is right, they bounce around asking questions. At first the news hits you hard when you find out about hep-c and you get scared trying to find answers fast. Then they kinda settle down and maybe forums is not for them.

And sometimes i just plain wonder whats up. After reading through several of there post some start to contradict themselfs.

I quess all we can do is try our best to help the ones that really want it and hope for the best for them.

[friscosue13]

As a new person, I don't really feel that I've paid enough dues in this area to be responding, so pardon me if I'm speaking out of turn.  I'd like to say, though, that I've always handled the big issues in my life by asking questions, collecting information, then putting my head down and forging ahead without discussing it further.  That has always worked for me and has been productive.  I just didn't grow up in an atmosphere where we talked about things a great deal -- just went ahead and did them.  Kinda like a semi-denial where if you don't talk about it, it isn't that bad, and by focusing on the positive you make things better.

I am very grateful for all the information, support and kindness that I've encountered in this forum.  It is a new experience for me.  Perhaps people who don't return come from the same background as I.  As for just feeling bad -- don't.  I, of course, can only speak for myself, and you've been not only most comforting, but your sense of humor has been just what I needed to get me even this far.  Thank you.

[anise]

Great question, nygirl!  

My take is that there might be several reasons people don't come back.  One, it is a lot of information to digest.  Or, it might be they are lurking in the background (something I do and did a lot).  Maybe, their post might have gotten lost (happened to me), or they post at the end of a thread and got no answers as no one saw it (also, has happened to me).  Possibly, there are lot of posts to read.  These are just some of my thoughts.

This site has been extremely helpful for me.  I not only learned a ton, but I got off my butt and made a decision after 5 years to treat.  By the way, since I made the decision, I find that I have been posting more.  

Algernon, I agree with you, some of the information freaks me out also.  Particularly when I read that some people who have immediate reactions after the shot means they have a greater chance at clearing the virus.  Yipes, what does that mean for me?  My husband is having a great laugh at me.  Before the shot I was freaked out that I would have a bad reaction.  Now I am worried that I am not having any reactions.  Go figure.

[NYgirl]

How long have you been tx now?  I can never remember these type things while some of the others seem to post all our stats at will!

Just remember......sides come and go during the entire time.  Just because you are alright NOW doesn't mean you won't be sick as H3LL later on!  :)  Then it will PROVE it's been working ALL ALONG FOR YOU! YAY!

LOL I've never typed out THAT before hahahaha.

Seriously though - while I never got that huge FLU (until a few times recently 22/48) I did get the mega anemia problem ... oftentimes I wonder is the Riba working then I remember oh yeahhhh look at all these bumps and why you are still taking the Epogen.

Don't worry. Be happy you don't have any problems right now...I don't believe for a minute that just because you aren't sick as can be that it's not working.  I think you are just lucky.

[Mister beagle bailey]

This is a very good question and may need to be addressed.  I don't think there is a right or wrong way to answer any question, all we can do is pray we say the right thing for that person.  I for one found this MH forum to be a God sent with very caring and helpful people.  Some say as they see it, others sugar coat it, the forum is a melting pot of many personalities.
We all just have to deal with each one, one on one and do the best we can.

Getting read to do shot 8, will be back later.

        Beagle

[antman]

i haven't posted since the condom eating incident but i read nearly every day. my situation really has been answered by all of you good ppl. now the debate is in my hands. there is no easy answer for me. i'm 50 , geno 1a, 1/2 in good health, otherwise. i got good opinions from you guys. but the advice was that there is as good a reason not to treat as there is to treat. so, i'll keep weighing the decision and proceed as if i were going to tx this year.what more can anyone say? i don't know.
antman

[Mister beagle bailey]

Oh great all you had to do was ask and we will always answer you.  I just relized that you thought we were talking about the state of Texas, it wasn't.  This is something we can all address.  a few weeks ago, some of us posted the meanings to the words we use.  

I'm going to post them now and any one out there please add to what ever I forgot:

PCR: polymerase chain reaction (viral count)
GGT: gamma glutamil transferase
WBC: white blood count
ALT: liver enzyme
AST: ditto
FA: phosfatasa alcaline
TX: treatment
SX: side effects
BX: biopsy
VL: viral load
EVR: early viral response
RVR: rapid viral response
SVR: What we all want= sustained viral response

I hope this helps all the ones new here, we (including my self) never gave it a thought that there were some out there not knowing what we were talking about.  I'm sorry for that, but please in the future just ask.  I can't tell you have many questions I have asked that I felt stupid for asking, now I just ask away.

Please just chime in here with us and I promise you we will explain what ever you want to know. Please don't feel like your not a part of this group because you are. Remember we were all new here at one time.  You will also find that many friendships form here on the forum, and WE WELCOME YOU ALL.

     The Beagle

[strator]

oh great-I do understand your confusion when threads get sidetracked about matters seeming unrelated. I had that same confusion at first when I posted here. In fact when you mentioned the itch I realised it was me that hijacked your thread. I do apologise if it caused you confusion. Please understand though... sometimes we talk about a number of subjects for days because there is not enough room in a thread, othertimes(not in your case) an answer to person's question may have been covered pretty well already. Basically it gets down sometimes to those of us on here a lot not wanting to use up the few threads the forum gets a day for a question of someone/something in partucular, like I did that day. I still get confused though less, following threads. Again my apologies.

NY-Yeah I do wonder sometimes about those that don't come back on, but there are just too many reasons people may not hang
around. Again I think forums are like public modes of transportation. Some use em more often than others. Some choose to get places a different way or get where(what) they need and go off to find out more, or just deal with life. This may be the forum I came across once a year before I posted, and was scared away because what I read was just too much for me to handle at that time. No ones fault. I just wasn't ready to receive all the stuff about this disease and tx. Often takes me a long time to receive the help put in my life properly. Not much we can do if someone new is suddenly MIA, maybe put a post out asking how they are or keep a good thought for em. We have to remember this forum isn't the only mode of transport to the SVR stop.
All be well,
Don

[roxxiroo]

I made my  final decision to treat as a lurker of this forum. For me the information supported the info I was getting from my medical folks as to why with all my factors it was best to treat. Also during that lurking time, I was cutting and pasting things related to sides. Most of the highly informed posters of the summer are still posting now. I was very grateful that support was caring and giving. It was also helpful that most people were staying positive even if they were struggling with sides. Basics like the continued emphasis on drinking water, keeping the body moving, and healthy eating have to this day been helpful. If I was slipping in any area, I liked the pep talks. Laughing out loud often from some of the post has also been a good release.

[Hepa-Friend]

I am one of those people who lurk in the back ground. I have taken in alot of information. I have tested positive for hep-c
and have since started treatment which for me is working out great. When I first found out I was really confused, but reading
what everyone else has learned about their own treatment, I now
have alot of knowledge and knowledge is Bliss.
I did'nt really have anyone to talk to about it and concerned for my wife of 18yrs, if maybe she contracted it from me. And also how my friends and family would handle it, there was so many questions and so few ansewers. I have since told all my friends...who have turned out to be a great support team...My
wife has tested negative and been by my side through the good and the bad of this treatment...And I have found a really good hepatoligest....What more could I ask for. I could'nt have done all this without lurking on all of your comments. I finish treatment on May 17, 2006 and I just keep my fingers crossed and a positive attitude. I may not always say much, but I am always listening and learning.

  Thanks To All.....Us lurkers need you

[jmjm530]

It can definitely seem that way. But what you have to understand is that the structure of this discussion group is different from most.

In most discussion groups, someone starts a thread -- asks a question or makes a statement -- and that then becomes the subject for all posts. New threads are somewhat unlimited.

Here, we are limited to opening only 6-8 threads a day. So what on the internet is commonly called "hi-jacking" (changing the subject or answering a question with a new question) is a pretty well accepted practice out of necessity here.

I personally prefer the more structured approach where threads are topic oriented and a new post brings a thread to the top. That way people can participate or ignore threads they're interested/not interested in, but more important follow them easily. One great example was a thread at another group which started I believe when the person was first dx. This person's tx history was followed through end of treatment. Then, no posts for six months -- and then presto -- he posts his six-month PCR (Negative!)bringing the thread from the bottom dregs back to the top. A wonderful completion.

That said, this place offers some great information if you take the time and trouble to wade through the threads and different discussions within.

I guess what I'm saying is that no one was being rude or disprectful to you, it's just the way we have all adapted to the Med Help software. Like everything else, this place has its pluses and minuses.

-- Jim

[can-do-man]

Your question was........I just found out that I tested positive for the Hep C antibody.

I did count 13 responses to what was a very limited question. Im sorry if you found it upsetting as no one here would mean for it to be. Just not that many ways to answer that type of question. And yes we do highjack threads but were limited to so many threads a day. So if a question has been answered a few times and theres really not anything that can be added that wouldn't just be repeating ourselfs. We try not to let the rest of the space go to waste. That way if anybody comes in that needs help theres a thread they can open. But please do come here as often as you like with any questions you have. Best of luck to you

[GoofyDad]

I think people probably pass through, maybe read some, maybe post a question, and maybe don't remember where they've been.  Most people plop in on us from a google search and have probably hit numerous new sites that day. I think the retention is actually remarkably high, all things considered.

There's no question that people get informed answers to their questions here. The knowledge here is truly amazing.

Unfortunately we also seem to have our share of personal attacks. Well respected people here, who have proven their patience, knowledge and compassion, are besmirched and slandered. It's unfortunate. If I were to pop in for the first time during one of those flame wars, I think I head right for the exit.

It's ironic. The wonderful people here, combined with the balanced debate are probably the place's biggest assets. At the same time, when the debates get out of hand, those same qualities turn on us and become our greatest liabilities. Go figger.

[bodellen]

Hey There ! How is everybody ?

Well I made it back, seems as if I may have jumped off my pitty potty too soon..For those of you who dont know or dont remember I had a completley misserable BX. a couple weeks ago....
  Well I stuck it out till friday afternoon , by then I was sure I should be getting a baby out of the deal...turned out not to be labor which was good since I had a complete hyst. several years ago,instead I had a major hymoriage going on doc not so nice hit the major artery a couple big veins  took 5 1/2 hours of surgery and a couple units of red cells but I made it..Dont want to jinx myself but I think I actually might feel better for real this time...I think 1 more bag of iv fluids and they could have floated me in the macys day parade,,ha! ha!
any way I guess my point is somtimes although we appericate all the good words of wisdom , circumstances above and beyond our controll interupt our intentions...

have a great day>>(dang I think I better lay off the pain meds)

GOOFY BUT OK....BODELLEN

[can-do-man]

Hep a friend, now i like that screen name, hope to see you post more.

Tator, thanks, thought i was maybe the only one that had that view on forums.

Poor girl, you and your bottom. Whether its bottom feeding, or bottom burning, or just getting to that itch. Or useing it for a chestboard, i don't know.

But hey its sunday evening should be plenty of threads left so for once be a top feeder and open one. Come on now i know you can do it.

[can-do-man]

Hey girl, i remember ya, i was the one betting jims riba that youd have a smile on that pretty face. Don't think jim ever caught that post though. Glad to hear from ya

[cquest]

I'm still laughing about the Texas/tx comment...never thought about how all this talk must sound like Greek to people...I can just imagine the bewildered 'Why is everyone always talking about Texas?' look on your face...ahhh...I'm dyin here...

I know what you're talking about, the starter of a thread feels a certain ownership of that thread and probably would like more  answers directed towards them. I understand. I'll try to be more concious of that in the future. I certainly don't want to scare anybody off...

It does take some time to feel like you belong but don't be afraid...just jump in w/both feet! Pretty soon you'll feel right at home!
Cin

[Mister beagle bailey]

Hi cindy, haven't seen you in a few days.  That's why I posted above some of the lingo to how we talk.  I to couldn't stop laughing about Texas, but then I realized they had no idea what we were talking about I felt bad, just wish someone had said something earlier. How are you doing?

Hi Ellen, Glad to see your alot better.  Any word on the results of your bx?  What's your next step?  Let us know.

     Beagle

[HCA]

I've thought a lot about the day trippers who we answer with such diligence and concern,and I'm glad we are having the debate.
The principal reason I suspect people don't return is they are intimidated by the great rush of knowledge that is dispensed,and as rookies don't feel qualified to become involved.
Most of the regulars have done countless hours of internet study whilst the novices are still wondering if Milk Thistle will make everything all right.
I have a lot of experience in support groups where I am sick to death of counselliing people who are scared to treat.
Acceptance and wisdom of HVC status takes time-maybe eighteen months,and I expect that some of the ephemeral questioners will return to the forum.
Funny how, as many of you have observed,a desperate patient checks in here-we all give a big welcome,and generally speaking consistent advice then poof!!!!!!!!!!
Lately we have said 'let us know'-but they don't!
We just have to continue,without expecting gratification down the line.

[anise]

Lilmoma, if you feel like talking just jump in and say how you feel.  This forum is both informative and just plain everyday stuff, from what I have seen.  I and others will respond and tell you how we feel.  By the way, how do you feel after your 1st shot?  I read somewhere back that you didn't feel so good.  My 1st shot went quite well, I am still wondering when I will get hit.  My next shot is coming up this thursday.  I'll see how I do then.

Roxxiroo, when did you start treatment?  How many more weeks do you have?

Nygirl, this was a great post you started, thanks.

[harty29]

And then there are people like me too......love and appreciate everything I read here.....the humor, the advice, the suggestions.  But, never feel comfortable giving my input.  Maybe those people come here.......ask their questions.....and then sit back and take in the knowledge.

[can-do-man]

Would like to also add this.

For some people they need forums where everybody signs off with hugs this and hugs that, or love this and love that. And have those fancy sigs. If thats what they like then great. Just not my cup of tea.

Then there is some people that want the forums that are always serious and everything seems to be dreary and strickly business only. Once again, if thats what they want great. But also not my cup of tea.

Then theres med help. Where i find that just about everyone here does care. If a hug is needed they'll get it, if its something thats serious then we can be serious. then theres the humor side to it, which i find sometimes laughter does more for us then the meds do. Here you find a little bit of everything.

I find that between the folks that have won the battle,losing the battle, or still fighting the battle. We have more knowledge here then all those other sites combined.

We just need to let some things roll off and try not to take it to personal.. (plus the food fights can be fun at times to, and its always free).

[lilmoma]

I am pretty new here,...I haven't posted alot, and I just took my first shot, I would like to post more, but "you have to post a question" what about if someone just started a thread to say hey, anybody out there, anybody wanna talk?.
I know I thought about that earlier today, then I wondered,...what would I say, I don't really know anybody and some of you seem to have  "private conversations",going on. Don't get me wrong, I think that's great, it can feel a little intimidating to feel like "one of the group" sometimes.
I hope I am not wording this all wrong, I prolly am though.
I really like alot of the stuff I read, I get a kick out some of the humor.
Have you ever been around a group of people for the first time and they have their private jokes, or maybe they just have alot of history, it is hard to break through that.
I hope I have not offended anybody, I sure dont mean it like that, I just figured this was a thread I could contribute to.
lilmoma

[harty29]

It's good here becuase you don't just get a ton of positives or a ton of negatives.  Everything is well balanced.  Everyone seems open and honest.  I had found other boards where it seemed like only the negative people posted.  I started to have a "woe is me" attitude.  This board here helped change that.  I feel more in control.

[ohgreat]

NYGIRL,

To tell you the truth, I have been scared away for a while.  I just returned from earlier this week out of curiosity.

I think what scared me away was the back and forth between seasoned forum users about what I think now are different subjects than I originaly asked about.  I am refering to my "Im am pretty upset" thread.

It seems like a lot of verteran thread posters just cant wait to talk to one another and they will just threadjack a posting completly off course.  I think it would be more helpful to me if those people would respect the original poster more and then create a new post for what they want to talk about.

I was so upset that I was missing the fact that people were not talking about what I was asking and going onto the fact about itching and creames and TX and stuff.  It became confusing.  I still dont even know why people talk so much about texas here.  Is that the best place for treatment or something?

It really kind of confused me and I got the feeling that people just wanted me to get lost until I could come back with a definate answer with more results more results, perhaps "yes I have HCV."  

Going to get more results is a hard thing for me that I am having to face emotionally and finacially, but I will save that for another post.  This is just my 2cents on your question.

[can-do-man]

Hope you don't mind me asking this, but just how did you come up with the nic antman?

On the condom thing, i just wish he/she would post back and answer us on how that happened. I mean did he/she take a "header" face first or sumin?

[sideline]

Hi, I may be one of those who didn't come back.  My husband is on his third week of treatment.  In the beginning I think there is just to much information to take in all at once.  All of you were incredibly helpful.  I check this site every day from work and find incredible support and information.  My husband seems like he is having the life sucked out of him.  Nausea, dizzyness and severe headache.  Any suggestions?

[anise]

Nygirl, I just had my first shot last thursday, so I have a long way to go.  I shouldn't complain about not having a reaction after the first shot.  When I read that those who have a reaction after their first shot had a better chance at SVR, it freaked me out.  If I continue to be lucky is something I am not holding my breath on.

Lilmoma, I am glad  you posted, as we are starting at †he same time. We can compare notes and I would love to help you feel welcome.

[antman]

lol. your the 1st person to ask how i got the moniker antman. it's not very exiting but here you go. a friend of mine from south philly said i reminded him of a guy he knew growing up named anthony. they called him antny, so that friend started calling ME antny. that got shortened to ant, then antman. now my brothers even call me that! so there you have it. btw-my real name is, get this- scott! thanks for asking.
antman/scott

[can-do-man]

Well im sure gald you cleared that up. I've been trying to fiqure it out and nothing made sense. Im just glad its not no ant fetish or something.

[lilmoma]

thanks, I think friscosue said she was starting in a couple of weeks. There will be a few of us going on the same ride at the same time.
I think its comforting to know I am not alone.
I appreciate it when I can talk to someone, as I never get to "really " talk to anybody.
I work in customer service, so I spend all day saying what they want to hear, it would feel good to just "tell it like it is"
I think a board like this allows that,...still I dont like the idea that the threads are for posting a question,...most of the time I dont have a question, I just want an exchange that is real with another human being.
lilmoma