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]

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.

[Rockerforlife]

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....

[Rockerforlife]

"if i am in bed"....and my hair falls out.....i meant to say

[geterdone]

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

[epiphiny]

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.

[Fl_Gator]

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.

[Marcia2202]

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.

[Fl_Gator]

very well said...you are so very right

[ArthursMom]

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! ; >

[StormRider]

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...

[sunshine585]

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.
  
  

[Annie441]

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

[Harry Potter]

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.

[Marcia2202]

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.

[Andiamo1]

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

[Andiamo1]

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

[Andiamo1]

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.

[epiphiny]

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!

[charm27]

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

[R Glass]

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)

[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



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]

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.

[can-do-man]

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

[R Glass]

Now you’ve got me wandering if my wife made that part of the song up just to watch me try her clothes on.

[lapis]

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!

[lapis]

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!!!  : )

[Marcia2202]

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.

[jdwithhcv]

"Don we now our gay apparel"  ~  Put yer glad rags on!!!

Merry Christmas to all.

jd

[sunqueen]

:-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.  

[epiphiny]

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 :)

[Deb_c430]

Sending you hugs SQ and Epi, not feeling so great, but wanted to wish all a Happy Holidays!

[Marcia2202]

Sorry to hear you are not feeling well. I hope that you will feel better, especially for the holidays!

Best wishes, Marcia

[susan400]

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

[rita863]

Well said Susan~~~~

peace
rita

[epiphiny]

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 :)

[ladybug52]

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

[ladybug52]

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

[sunqueen]

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.

[Deb_c430]

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!