Disturbing Posts

I, for one, was taken back by the tone and language occurring in some of the recent posts over Christmas.  I have recommended this forum to other people I know with HCV and became embarrassed that I had after coming home from family and friends yesterday night and reading what was going on.

I

[The gaffer]

Riba baby. :) Don't worry, be happy.

[DreamAngel]

Tri-Guy-Thank You for posting this, it is my thoughts exactly also. A few people on here definitely are out of line, I am not sure what that think they are gaining by hurting someones feelings, but they seem to do it over and over again, and terrify new people who do not know "THEIR RULES". Not sure who owns this forum, maybe the ones making the rude comments think they do. I hope that poor girl is alright, as well as all the other people that have been run off and offended in the past. Take Care

[kennedge]

well i'm not gonna make any freinds with this...but

new-sogurn (sp)...you say you are disease free...then what is your problem...you did not even get a gift for your partner who stands by you...what is your excuse...do nothing...poor me i almost died...quit smoking so much dope and maybe you could get up out of the chair and show some thanks for those around you...

sorry

[louisep]

I feel so sad about all this....it really is terrible....what happened to all the compassion that I've felt here?  It's such a difficult time of year for everyone.
I'm not too happy about being told not to respond to people in need of a few comforting words, especially at Christmas time....geez...I've probably been a pain in the a-- myself, with all my questions and all you patient people out there trying to simplify stuff for me...it's hard to think straight and not be impulsive when you hit a crisis in life!  
Please be HAPPY everyone....I need your positive energy to help me get through this.  TX IS NOT GOOD for me right now.
Wishing you all the best
Louise

[ringading]

well well well.....hummm, not sure how this should go...i will say, i haven't "run" anyone "off"...as i have only been here for 3 weeks total.....
now, if you do go back and READ every post from dear catglo, you don't NEED to be terribly intuitive to figure out that there is definatly an alterior motive happening here....re: abortion, and a fairly elaborate way of justifing one....I WILL SAY IT AGAIN.....WE CAN NOT TELL ANYONE TO ABORT...IT IS A PERSONAL DECISION...her questions......several of the SAME have been answered 30 different times kindly, lovingly and then increasingly, impatiently.as clearly, her "delemia" which is NO DELEMIA AT ALL, because most of us have children and ALL are hep free, that were carried with mom being infected...and she has been told this over n over n over..certainly pales in comparpison to what many many people here are experiencing and this was explained to her in 30 ways...it minimises others struggles..you can only tell someone something so many times, so many ways....i felt like my daughter was trying to debate GETTING OUT OF DOING THE FRIKKEN DISHES....OVER AND OVER AND OVER 30 different ways.....until FINALLY the blow up yesterday....now, i will not take back what i said...I WILL HOWEVER acknowledge that i was SLAMMED WITH RIBA RAGE and it was very unsettling, (i had 2 bad dreams about my behaviour here)i definately also acknowledge that my "delivery" was harsh, and apoligise for the foul langage...but i tend to be "foul mouthed" anyway and don't expext that that will change a whole hell of a lot when ever i am that pissed off....so i won't pretend to tell you that i'll never swear again...BIG DEAL like no ones heard/said the words before..shall we tailor this site to be ARTIFICAL for some...finally yes, she is confused and does probably need proffessional help, of a different sort.....but my point remains the same...she got tons of answers, and KNEW the ones that were from erin and STILL persisted, waiting til someone perhaps was stupid enough to tell her what she wanted to hear .....okay, bloods beginning to boil again.....

[OkieJim]

Hey there Merry Christmas,
So sorry to hear your having a rough time. Today the Riba has really been tweeking me also. This is usual until tonight when I do my shot it does seem to calm the riba down for a couple of days. Plenty of water which I haven't done today HAHAHA!!! Oh you know everyone knows what we should do. I hope you get a couple of good days during this holiday season. We all deserve this. TX is just such a wonderful thing when it is working but of course we do have to feel sick sometime.
Love Peace and Happiness.

[Space Coast]

Quit using full of rage as an excuse! ringading your just full of **** like someone else I posted this same thing about! And if the truth hurts, kiss my ass and just don't come back!

[ringading]

ho ho ho ha ha ha....well......our "first fight"!!!!
sounds like yah gotta little RAGE going on yourself baby!
kissing ASS has NEVER appealed to me
cheers

[Tri-guy]

I know how easy it is to go off.  For myself there wasn't a response that hadn't also crossed my mind while reading her posts and/or the posts of other people to don't bother going through previous days comments before asking questions.  

I don't have a problem when people are told, in no uncertain term, not to waste comment threads or not to post ad's or unrelated questions.  What bothers me is when responses back to people take on a personal and almost abusive tone.

O.k. off the soapbox.  I

[Space Coast]

I have a problem when people on this board are "are told, in no uncertain term, not to waste comment threads" why don't people just trying asking them!

[GreatBird]

This board doesn't belong to any one of us. Although it is called "Ask the Doctor" there is no doctor, and although we are allowed a limited number of questions, these slots are used by folks (new and old) not always for questions. It has become a support forum and those who continue to come here have managed to do that even with this awkward structure. New people don't know this unless they lurk for some time before jumping in. Not everyone does that.

Most of the people who come here are in some great state of anxiety or another and one of the most important things that they can take away from here is knowledge and kindness.

But compassion does not seem to be dispensed equally on this board, nor has it ever in the almost year and a half I've been here. We could all try a bit harder to be compassionate. We don't have to all get along, but it sure would be nice if we did. If a response will only serve to inflame then what is the good of it?

I appreciate all the good folks here who come day after day for support and to support others. I don't post often, but I read often and I care so much about how all of you are doing.

Pax.  

[jonihs]

I am a really mellow person, not even very much riba rage, but you really can't help becoming impatient w/ a person who asks the same question over and over, looking for differtent answers. If I run into the wall a couple times, I move over until I find a door. She was given several sites for looking into her questions. Even I got irritated and that's not like me. We need to not only be patient w/ newbies, but w/ each other, also.    Joni

[Eyedeas]

While I too can get upset at reposts and those who don't seem to get the help they are asking for, I am very disappointed with those who turn this into an excuse to let the Riba Rage dogs loose.  Now I'm sure my disapointment doesn't mean much to anyone, it is simply my disapointment.  

Swearing and attacking at the level I saw is uncalled for.  Tell them to go away until they are willing to listen if it bothers you, or simply ignore the posts.  I'll rage at the snake oil salesmen who come into our support group, but no one who comes here looking for help should be abused.  catglo, I'm sorry you are so upset and I am sorry in part for the reception you receved here.  When you ask for help, you need to be willing to accept it, even if it's not what you wanted or needed to hear.

To all my friends, remember that if you attack someone here you may drive off a dozen others who lurkred and were offended.  Think before you post and then think again.

Kim

[GwithHepC]

Louisep:

I hope tx gets better for you.  I'm sending some positive energy your way.  Have a GREAT holiday and New Year!!!!!

Ringading:

I have read you post a few times now that all the people on this board with hepatitis C have children and none of their children have been infected; this is simply not true.  My 12-year-old daughter is infected; she acquired the infection from me while I was pregnant with her or through childbirth.  Transmission to children does occur; but it is very rare (about 5%.)  So while it is something that one should not be overly concerned about, it does happen.

Everyone:

I hope everyone had a great Christmas.

G

[GwithHepC]

Just reread my post; I said "...all the people on this board with hepatitis C have children."  I meant to reference those that do have children.  Didn't mean to imply all people on this board are parents.  I hope I didn't scare anyone :)

G

[louisep]

Thanks Okiejim.  Sorry to hear you're not doing too good either.  Yesterday was a long, long day, wasn't it?  Kinda glad it's nearly over....it's hard work tryin to keep that smile on your face for family & friends.  Hope you're feeling better soon.
Gwithhepc, got that energy back, thankyou so much!
Hope we're all doing ok here???  You guys all mean so much to me.
Best wishes to everyone
Louise

[catglo]

This is a comment not a question... First and foremost, I think there are people on this post that may have some personal issues to be worked out amongst themselves. I am not looking of advice about having an abortion because that is the last thing i would do under normal circumstances. However, it is a matter of bringing a child in this world to suffer from a disease that could be fatal. I did my research mothers with hep c have a low chance of passing it to the fetus or child at birth. But, mothers infected with hep b have a 90% chance and usually the all of those babies will be chronically infected and develop liver damage, in other words their immune system is not strong enough to fight it off like an adult. And my questions are concerning two different hepatitis B and C so it is not asking the same question. Unfortunately both of those tests were not conclusive. I was able to make it to my regular doctor today and she informed me that because i was tested repeatedly for hep c antibody not to worry about the riba test being indeterminate. She said i dont have hep C. And she believes, not 100% sure though, that the isolated hep b core antibody with everything else negative suggests the same thing GI-PA posted. So, I have no "alterior motive" just concerned about this situation and if i could pass it on to an innocent child. The neonatal care center at hospitals are full of SUFFERING babies slowing dieing from hiv and other terminal diseases that was passed on by their mothers and if i had a motive it would be to prevent that from happening!!! I will not be visiting this site no longer not even for comments. Infact, I will terminate the membership and erase the site effective immediately. I am appauled by the insenitivity of some on this site. Again i wish everyone a healthy and long life. GOD BLESS!!

[GwithHepC]

catglo:

I hope you read this before you go.  Good luck with your pregnancy if that is what you choose; I hope you have a beautiful and healthy baby.  

G

[jonihs]

Anyone who is offended by the language that was on here, shouldn't read it. We all have the same disease, but different problems. Riba rage is something we don't understand or can't predict.I see you expect us to understand people that irritate us, so maybe you should do the same.   Joni

[Tallblonde]

You're missing my point.  Language isn't my primary concern here.  It's about treating people with a reasonable degree of respect.  I'm irritated with you right now, so is it okay for me to call you a *****?  Of course not.  What kind of forum would this be if that was considered acceptable behavior?  You're defending the indefensible.  

Susan

[cuteus]

It is so refreshing to see that there are so many posts of people who don't try to justify insensitivity with their illness, tx or menopausal condition, also (not yet included) with having hot latin blood.  I could use all of them, but what is the point? Justification only.
Like Dh bill said, this site acts as a sanctuary to most of us, and those who wish to be controversial could consider building their own website: ragers or venters.com.  WE NEED HOPE not hate.

I also get annoyed with people that post questions on subjects answered just the day before, but some of us have been trying to search prior questions in this forum and  can't seem to access them.  I keep getting years old questions when clicking on archives, nothing in the current year.  For those of us who do try to research a question before posting, how do we go back in the forum (say Jan or Feb?)

[terriri]

Hi all. Wow! This is the time of year for high emotion & there sure is a lot of that going on here. I hope those of you who were upset by others actions--- don

[Space Coast]

You freakin people and your stupid reba rage, get a frickin life! I've been doing 1200 daily of the **** for 9 months and yes it makes me crazy, but grow the f up would you!!!!!!!

[ringading]

okay everyone....once and for all....i think whats happening here is things have spirlled WAY outta control..and maybe those responding here are doing so only seeing a small peice of the on going  conversations with catglo..if you re-read ALL the posts from beginning with "catglo" you will clearly see, i,  as well as many others new-sojorn included, responded very lovingly several times over........yes susan, i agree with you and when i woke today, after 2 terrible dreams about my loss of control, and cutting words i felt ashamed of myself...sadly, guess the huge lesson here for me is not to so quickly push that POST COMMENT botton, when i am motivated by any kind of impatience or anger, (riba or otherwise)....it can be hurtful and a BIG MISTAKE, sadly, once pushed, we can't retrieve it, even though within moments we wish we could, take it back...it is there to hurt, and for all the world to see..LESSON LEARNED!...now, if you read my post this morning, i clearly acknowledge responsibility for my words and do admit my delivery was very harsh an DO apolise for the laungage...there also were some very other horrible things said here that have NOT been acknowledged...by space coast, telling me to "kiss his ass, and don't come back"....and kennedges horrible words to new-sojourn as well..we are all accountable for our words, sometimes they come out faster than the good judgement that should guide them....etc etc. i do humbly apoligise for my impatience and very poor taste and judgement...and thank you eyedeas...how beautifully simple., i could have choosen to just NOT RESPOND...i didn't...and clearly have injured feelings...i can't erase what has happened...(and i STILL FEEL similar as i did about WHAT i said...but...HOW I SAID IT WAS HORRIBLE....for that i am truely sorry...i should know better..catglo, i apoligise, these are powerful drugs and althugh it can not be considered an excuse for poor behaviour, there are other things at play here that you can't understand as you are not infected with this and are not being treated with these horrible drugs that can at times do strange things to our better judgement...if you RE-READ the posts, you will CLEARLY SEE that you really are not in ANY danger, NOR is your child!!.PEACE!
ringading....kimmy

[DH Bill]

OK! For some reason what you said made me laugh. Just like when I looked in the miror this week and realized the tx was chasing my hair away. I'm on 1400 mg of riba a day. Maybe the more you take makes ya laugh huh or laugh instead of cry?

Terriri, have you got 6mo test back?

[Tallblonde]

Way to go Kim!  You are a woman of integrity!

Susan

[willing]

I'm sorry you were treated so shabbily over the past couple of  days. You had legitimate questions about ambiguous and hard to interpret test results in the course of your pregnancy.  Though you received some sound information and support, you were also the target of unjustifiable mean-spiritdness. It's a holiday, many people are away, and unfortunately, you probably came away with a very negative view of this board. Sad.
On the plus side you last post suggests you've come to a good understanding of the situation for you and your baby.  HBV and HCV  have different maternal transmission risks : for HCV it's about 3-7% <a href="http://hepatology2.aasldjournals.org/scripts/om.dll/serve?action=searchDB&searchDBfor=art&artType=fullfree&id=ajhep036s106#head4">see</a>), for HBV this can, in fact,  be up to 90% ( <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10921375&dopt=Abstract">see</a>). So knowing whether you are an active carrier of HBV is important. Testing negative for presence of the virus (negative surface and core antigen) but positive for antibody (surface or core antibody) suggests past infection. Since you only test positive for one of the antibodies either the surface antibodies have lapsed or they were never made. Having a direct, sensitive, test for HBV RNA seems a good way to confirm the virus is not active.
The HCV riba test,  is and older and less reliable test for active presence of the virus ( I believe GIPA mentioned a while back that her office no longer uses that test). The two anti-hcv tests trump the single positive c22 antigen result (<a href="http://www.labcorp.com/datasets/labcorp/html/chapter/mono/hc001100.htm">see</a>). If there's any doubt, following up with an HCV RNA test would be worthwhile, but here it really doesn't seem worthwhile. All the best to you. If you have further questions please post!

[new-sojourn]

Well, I use 'cured', b/there is no universally recognized criteria for a 'cure'.  I use 'disease free' altho we don't know if the tx is permenenat or temporary or an illusion.  I have such permanent and long lasting effects caused by the hep c that I will never recover.

For instance, I had a minor eye injury that the bleeding behind the eye would not stop, I was in 2 hospitals-one 150 miles away-and permanently lost the sight in my right eye.  Which is ironic since I was a prof. photo journalist.  The tx permanently damaged my left eye so I'm legeally blind.  My platelets were non-existant b/no one checked for hep c, altho I once again almost died on the emergency operating table b/c the blood just kept on flowing.  Massive infusions of platlets, b/no hep c tests.

In Mexico, I fell down some steps @ the villa and ruptured 3 disc-the bleeding thing again-and didn't walk for 4mo and still no tests-b/it was Mexico and I did have a 'private doc'-US doc who gives 'advice'-very common.  So I have the whole back thing now.

My liver failed, so I haven't read yet they can re-comp a de-comp liver, so I assume that's normal now-a decomp liver that can go anytime.  The encephalitis seems to not be permanent, as long as I keep ammonia levels down-ie, red meat-b/I still have huge gaps which may or may not resove itself.

As to my partner, we're like Opraph and Steadman-we don't exchange presents-we do something for each other and together.  We are laughing today how great it is to have had a great Christmas, w/everyone satisfied and no debt, mess or post holiday let down.

Our gifts to each other are trips, and we have a biggy planned next fall and winter.  We are renting a place in Amsterdam for3-5 mo and touring Europe and S Africa, using the flat for a home.
He's on a music quest-incl the homeland, and I'm goin to start documenting this historical musical journey,

Remember, I was suppose to be dead, not seeing 3 more Christmases and planning a major ccommercial project.  I was planning my funeral 2 yrs ago.

I don't bring my problems in other areas of my life here.  I just want to see if this is a'cure', a false cure, a respite.  Also, I like to encourage the very, very sick to still seek treatment and that its doable, even w/no insurance or big bucks.

[DH Bill]

I agree with Kim this is disapointing to me at a time I don't need it. I work in construction and can keep up with the best of them just ask some of my crews. Add riba rage and I can really excell! This is NOT the place to "Let the Dogs Loose"
If I want to hear cursing and anger I have a whole world out there to get it from but please not here. This should be OUR sanctuary. At 5.5 months I'm a little weary and sad and look here to the ONLY people who understand how I feel right now.

One of the things I see on this site is that someone is always worse off than me and it humbles me a lot but still some of these same people have taken the time to incourage or cheer me up and I just want to say thanks to all of you for that it keeps me going when sometimes I want ot quit.

Don't get me wrong I have vented on this site and will do so again as some of you know. Just try to keep it cool.I hope everyone has a better holiday time.
Bill

[Tallblonde]

Ladies (and I use that term very loosely),

Shame on you both!  Please re-read your posts from yesterday tell me that you feel good about how you chose to express yourselves.  And on Christmas Day, of all times!  

You both owe everyone here an apology (instead of excuses about Riba rage.  I hope you each have the integrity to make amends for your deplorable behavior.

Susan

[new-sojourn]

Well, I'm not sorry.  I wish someone sometime had told me I wasn't neurotic or psychotic or menopausal or depressed and I didn't have to almost bleed to death before I was listened to.

I think we did listen and try to figure out what the hell catglo was talking about.

Once it became clear she wasn't reading, researching or absorbing the info and good vibes, I just crossed over into her mind and talked in ways she would listen.

Like the suffering aids babies line posted earlier-what the hell does that have to do w/tx sx's?  If I want to hear about the suffering aids babies, I go to Oprah's site and the angel network.

  In fact, our trip to Africa next fall is involved in a musical project for such kids.

[Tess Marie]

Upon reading the various comments yesterday, I too was schocked and amazed at the anger and language. I do not post alot, but I do read the site almost daily. I believe that we can receive more information here than we can get from our doctors, so let's not berate each other by using anger and offensive language.We need each other and if the same questions are asked over and over, it is probably the "brain fog" which has set in. As we all know this is a very serious disease which the medical profession is just beginning to understand, and that is why we are having so many different sides, and unanswered questions.I was on peg-intron for 48 weeks and was just told that I am a relapser. I am now appealing my case with my insurance carrier,as I have found a Hep. Specialist in the FL. area, which of course does not happen to be on my plan. I will not give up, and I have found that anger does not help.
I hope that everyone had a good Christmas, and please, let's not show anger and frustration to others on this site. We are carrying enough of this on ourselves and we all really need the support of each other. My wish for you all is that 2004 brings you a year of health, happiness and continued growing love.
Tess Marie

[Tallblonde]

If you think calling someone a ***** on Christmas Day isn't worthy of an apology, then you and I are from different planets.  HCV is the least of your problems.  I truly pity you.

Susan

[DreamAngel]

Tallblonde-Ditto to what you said. You are absolutely right, if someone can not apologize, then there Heart is in need of repair also. This site is for people who need compassion, when they feel no one else understands. The Name calling-telling people how to spell (the list goes on) and not giving positive emotional feed back when they need it is very selfish of that individual. Kind words can go a long way. Made to feel like your a child asking to many questions when you are an adult hurts very deep. I sure hope people look back at this and are able to change there ways. This has definitely ruined my day, it has given me the worst headache I have ever had since my Tx began.
I thought I could depend on positive feedback from people here, now I am not sure about that anymore.

[scruffy]

LOL:)

[susan400]

What ever happened to Peace, Love, Joy, Hope, etc. on Christmas Day? I'm not real thrilled with the language that was used on this board.  Well, since I don't want to get involved in the "Cat Fight", that's all I have to say.  Susan400

[jonihs]

DITTO,tomorrow is another day. We will still have heated debates and rudeness, but like I said before " If you let someone ruin even a part of your day,especaially when we don't know how many days we have left,we lose.   I choose not to let people upset me(try not to)   I had to take a deep breath and ask myself, Is this really worth bad feeling when I work so hard at good ones?    Joni

[ringading]

hey there,SUSAN400, not to be rude, but maybe you missed the apoligy i posted TWICE now...one more detailed than the first, concerning the HARSH INAPPROPRIATE LANGUAGE I USED..when is it enough of saying sorry, think the point has been made AND  responsibility accepted for the behaviour.... and there is nothing else to be added here now.....I GET IT....CAN WE ALL SAY ENOUGH NOW.....AND JUST MOVE ON.....LET IT GO....AND STOP BEATING THIS DEAD HORSE!!

think i'll post and post and post til,the thread is DONE

BECAUSE WITH EVERY NEW POST REGARDING THIS...THE "CAT" FIGHT AS YOU SAY.....ONLY GAINS MORE POWER AND NEGITIVE ENERGY....

IT'S OVER!IT SHOULDN'T HAVE HAPPENED, BUT IT DID SADLY, BUT NOW ITS OVER....LET IT BE OVER

[ringading]

PEACE

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