Confused and Need Help

[epiphiny]

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.

[epiphiny]

Ooops, it feels like my original question here has been a bit lost.... and so I'm just going to repost what I said on the other side...

"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."

Hope this clears it up..

Also, I was really keen to hear from people what THEIR expectations of the site are, especially the newcomers...  

I think it's helpful if we are all on the same page!

Epi :)

[lonn]

Quite blown away by this...I've seen great vital information..thrown back and forth.  My advice would be...take what you can get from it..and discard the rest.  Important to remember...each person is very different...so there is not a "constant variable".  

[merryBe]

this is not intended as like a hospital site with just the pertinent treatment facts. This is intended as a place to get help support, medical issues discussed etc.

that said, honesty becomes very important.  And yes, there are going to be some svary accounts because the MOST NEEDy, MOST SICk, are going to naturally gravitate towards a forum where they do get support and answers....and that may scare some away. But what cost freedom??

If someone needs answers or just encouragement or whatever, that's what forums like these are for.
The only way to never scare anybody would be to stop discussing the disease, or what to do about side effects. How much help would we be then....and to whom.

I wondered myself if some discussions, such as the occult residual virus and others should be in a separate red zone (readers beware)...but the truth is the the only way to learn about this disease, it's treatment options, and way to preserve the liver are to discuss all these issues openly. One is likely to find out more in here about the nitty gritty than one may have wanted to know....but the best advice to newbies is just to take it slow...don't try to learn it all in a day, or week...and don't assume every bad thing will happen to you.

Still, for me, and I think most will agree, just knowing what the sides were...and that they were common, helped me get through them. It helped me to not panic about mouth sores or eyes sores, but to know when to get help for anemia and so forth. I probably ignored 3 doxens sides just cause I knew it came with the territory...that made it less scary to me.  
I guess it just depends on who you ask, but I think Medhelp, and the forum members are doing a great job and should be very proud of themselves.

mb

[zazza]

Talking about side effects anybody know what happened to the vertex rash? I came upon this thread yesterday which is pretty descriptive of the rash when they first encountered it.

Hope nobody minds me posting this link. Prettydamscared was eventually cured from hep C but she and her husband got killed in a car accident. Very sad.

http://www.medhelp.org/posts/show/94513?personal_page_id=214829&post_id=post_728703

[pjhep80]

the purpose of this site is whatever you want it to be... support, information, just somewhere to vent, whatever....

[epiphiny]

Thanks for posting those links.  

You know, I had never considered the post tx side effects as, although tx was heII for me first time round, I seemed to bounce right back and actually felt better than pre tx.  I certainly hope it will be the same this time and of course I hope to be SVR as well!

Having read those posts I understand more your 'watch and wait' advice.

I think that it's great that people can get the big picture when deciding to treat and I also think that if some people are "put off" by what they read they were probably looking for reasons not to treat anyway...

The human mind is very good at finding evidence to support what it knows it wants to do in the first, if that makes sense....

Anyway, thanks again, this thread is tremendously valuable and I am learning heaps, thanks all!

Epi :)

[Tippyclubb]

When I first found this site I was scared to death, and knew very little about the Hep C virus.  I came here looking for information, whether it be good or bad.  I especially wanted to know about Interferon and its symptons, side effects, etc, seeing as my doctor really couldn't tell me for he's never done treatment.  How would he know?  I wanted to hear it from people who have and are experiencing it.  I wanted to know the chances of clearing the virus and upon clearing did that person feel better after enduring such harsh treatments.  I have found answers to all my questions from reading this forum, and learned so much.  It all came down to this simple answer.  Its a 50/50 shot, and people handle tx differently.  Its a gamble!  The question then became was I willing to take the chance.

Within the next few weeks I will be starting treatment and its comforting to know this forum is here.  I do have a wonderful husband, family & friends but I choose not to burden them with my treatment.  Instead, I will come here.  First of all no one really understands unless you've been through it--how can I expect my loved ones to understand?  I .can't--only you people can.  For that reason this site is so important.  Not only is this site informative , its a support system also.  For some, this is a family of sorts and deep bonds are made.

I have been reading this forum for a year and a half.  Within that time I've come to learn there are those who are really knowledgeable, and some who are not, even though they present theirself as being so.  I've learned some just complain to complain--I think of them as whiners, and some like to start trouble, and be sarcastic.  I think its so important that new people are able to weed out the useless information from the good.

Overall, this is a great site and most people offer great information, and are dedicated to eliminating the virus, and in the process are sharing the experience with others, whether its good or bad.

[jmjm530]

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.

[jmjm530]

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

[konyha]

Hey Lady~
I read most posts when I can and I am amazed and impressed to hear you have not started tx yet. I should have been as "confused" (or proactive)  as you indicate you feel at times before I started.

I have always felt lucky to have the commitment and insight from those with past experience with HCV. ...But really I should just remove the qualifiers and state it like this:
             I am fortunate to benefit from those with experience with HCV.

¡Feliz Navidad y Próspero Año Nuevo!
k

[bajawoman]

I came here looking for information like you the cold hard facts  I am not a chat person

I am interested in this disease we all have and knowing as much as I can  I was not scared off by the reality of tx

It was an eye opener for sure for me I was totally ready to just jump in and tx that would have been an error with the little knowledge my doctor has  

And I read the informative posts and am not turned off by bad experiences I really feel for the people here and what they are going through on tx or not

I plan to tx at some point in the future when it is the right time for me

I feel a bit excluded as I am not on tx  so I cannot chime in with any helpful
comments ore personal experiences

Not being on tx new people to the site can feel like an outsider
and may not post for that reason  as it is very techincal info here at times and hard to read for a first time visitor but everyone speaks up eventually at least they will have info to discuss with their doctors

Over all I think all the symptoms and sx that one has even though many are the same
and some have totally different experiences some not so bad and some absolutely
horrible

Since there is no research or info on how one may react as in individual as no consideration seems to be taken into account of a persons weak areas before tx
everyone is treated the same this I do not find acceptable so I want to know my weak areas

I know this disease can kill me maybe not now and maybe soon
No one knows this but there are many insightful comments and experiences here that I have learned a great deal from

Any censorship of the bad and ugly and nitty gritty truth would be totally unfair  and an injustice to a new comer

Having hcv is no walk in the park especially when your body is creating it's own interferon and fighting the disease making it hard to be the person you used to be

The more I know the better I can relate  

And truthfully it is a informed proactive person that will have an easier time making decisions about their treatment and when to treat and what they need during treatment if they cannot get it from their doctor they can come here for advice

So Epi it was a good question  
I have felt confused too with the forum but you just have to pick and choose what to read and when the need fits to ask and  or to chime in

I have posted questions that may not have answers
however I find the answers I do recieve informative
and the people here true warriors

Bless us all
baja

[PegOnPeg]

I've seen this type of battle within this forum under a few different subject matters.

The bottom line, for each instance, is that we are all human & different people expect different things..different experinces teach different people different things.  

You can't keep everyone happy...and there are some truly bitter people out there...sometimes, they post here long enough to stir up s*** and they move on...the rest of us are still here, because we get what we are looking for here.

I'd say, overall, the vast majority get what we came here looking for..support, deep understanding, hand holding, appreciation for the whining that many of us earn.

[desrt]

Subjective experiences of others are a valuable reference - as long as they're labeled as such and as long as people are made aware of how varied the tx experience is.

[scratchinghead]

operative word: "forum"

[konyha]

I'm not sure about your confusion related to the MedHelp website or the Hepatits C Community Forum, but the description above seems pretty accurate and consistent with your impressions :)

This forum is for questions about medical issues and research aspects of Hepatitis C 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 would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum

[epiphiny]

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.