I am AFRAID to post

[compulsive]

Okay here it is -

I feel like I am trying to navigate a mine field...  There are So many fights, agendas, and "taboo" topics that it is SOOOO much easier to just read and hope someone has info on my issue than to SAY anything.  I am NOT brave or socially adept and never have been.


  After all my posting yesterday - I finally noticed that somehow, the "food" topic was "a fight thread" for people.  I have no idea WHY such a thing would happen.  I don't get  how it got got to be a personal persecution issue - like right away.   I know  that I felt VERY uncomfortable about posting anything else after I read more of the other threads ...

But since I did post and I am posting now let me say this:

- I have no problem with other people doing well with tx - It's good to know that it is "okay" for folks.
  On the other hand I need reassurance that I am not the only one having a rough time with this tx.  I need to know that other people got through similar stuff and if they are okay or not and how they delt/deal with it.  I really really DO NEED this.

- I've been grouchy and moody 'cause I don't feel well and I never can tell whats going to 'cause hard feelings for other people or myself these days (for example: I get upset sometimes at "have a nice day" > my response - DON'T tell ME what to do!!!) Perhaps this could be true of others?

- I didn't mean to scare/hurt/or get in the middle of anybody elses anything -  I was just needy...

So - to make a bad joke - "am I okay??" or - any suggestions?

[beamishboy]

i certainly can share your feelin of isolation...my social world has literally crumbled under the hepC  gorilla inthe corner...i am a rural isolationist myself...a situation that worked much better when i was full-on mr. mingle & smooze..this trx has changed alot of things for me and now i am really examining my purpose,direction & situation...I love the woods,but i need to rub shoulders w/ my fellow man/women more..Seems like 48 weeks of trx and the spectre of mortality makes me treasure my moment inthe sun...I want to travel more,test myself & grab some gusto again...and i'm begining to think "i don't wanna live on Maggie's farm no more" -bob dylan.................i am seriously enertaining the idea of moving way south onto some beach and eating lots of fish-one of my youthful dreams that i have sporadically explored..hey.we only get one roll inthe barrel!!!!!! anyways,i encourage you to jump into the fray-whenever you can...i am thinking that i need to do what makes me uncomfortable..i need an edge of some sort..something i am sure you can relate to when riding your bike justa little too fast..

[beamishboy]

this is a GREAT big and wonderful (cyber) world ;lots of support,compassion and sympathy...use with abandon

[compulsive]

Gee - a person goes to the doc for tests and when she comes back, well gee guys - thanks...  

Cajun, I am so sorry to hear about MORE troubles for you, and really am sending my very best hopes for you.  Thanks for letting me know the mood thing isn't just me...

Thanks LindaK - nice to meet another newbie!!!


chcnme - I ALWAYS enjoy reading your notes too!  Even the ones that make me hold my breath hoping you'll be ok (the gasoline spill was scary!!!)  And you know - I AM gonna try "talking" more here - I really do NOT have any company out here, I live alone - nearest neighbor 2 miles, I wave at the mail man and trash guy - no visitors.  I guess I'll just have to get a little better at ignoring "things", take a deeep breath and dive in.


I-horm!!!  *laughing* I wanted to call the post "food fight" - couldn't get that out of my mind once it popped in - unfortunately I thought of it AFTER I re-read what I'd posted, it was too late by then of course...  Yep - I bet the Peyton Manning statement gets you some hot replys allright. *giggling*  WOW

Thank you Beamishboy.  I have always enjoyed reading your remarks.

[l-horn]

" After all my posting yesterday - I finally noticed that somehow, the "food" topic was "a fight thread" for people. I have no idea WHY such a thing would happen."

FOOD FIGHT !!!! It's the nature of bulletin boards. I've posted on so many sports and political forums over the years I think I'm numb to it. Forums tend to have a wider variety of views and communication styles than you find in person because, well in person you can be more selective about who you hang with, barring family of course.

When I get into a nasty mood I just go to a sports forums and post 'Peyton Manning is over-rated' on a Colts board and I get my 'mean fix' for the day.

Hang in there.

[chcnme]

Hey! no no no no no no NO NO NO DO NOT be afraid to post please!  :)  but I can relate to that inner voice saying "if you have nothing good to say, then say nothing at all" .  Some people are going through SO much and need to talk about it.  This is HEP C and the treatment for it (not just some crappy 9-5 job or bad supervisor we don't like :).  If there is EVER a time to allow others to talk about things in perhaps not such a "positive light", it's certainly time when Hep C and treatment come along.  Sure, a positive attitude goes a long way, but when a diagnosis of Hep C has been thrown in your bowl of cherries, life changes.  To imply anyone with Hep C or someone going through treatment should remain "cheery" and "positive" is ... well - (that's true),  but to rely on that cheery stuff all the time after Hep C and treatment enters that person's life is simply to deny that Hep C is what it is - a dreadful disease that requires "support" for the person who has it.  It's a special kind of disease requiring a special kind of support.  Everyone with Hep C needs a place to talk about what they are going through, and it's impossible for anyone going through an awful time with their diagnosis or their treatment to say "I'm having a really good day" when in fact they're having just an awful day.  When someone starts feeling they can't talk about how they really feel, then that person might begin to believe they have NO support.  That is why GOOD support is so important.  So listen up - :)  you just come here and dump whenever you want to, OK?  Talk about your fears, your sides, your...whatever!  Talk about your dreams, what you miss in life, what you can't WAIT to get back to doing, etc.   Just know that there are SO MANY who genuinely care about you.  

And lol on the  "errrr .... forum conflicts"  It's a trip at times.  I try to ignore it, too, but sometimes I find myself "caught up" reading it and giggling (and even responding sometimes in silly ways.)  I've come to adore some (most) of the personalities here.

You hang in there!  I have enjoyed reading your notes so much when I have time or see them.   I don't have a lot of time on and miss so many notes and wish I could respond more than I do, but I have truly enjoyed reading yours (and so many others, too)

And remember - you're going to be racing that dirt bike when your 80 (and targetting those beautiful trout, too, with a beautiful flyrod :)  

[LindyK]

Don't worry about what some may be saying.  I am relatively new (since Sept or Oct) and at first I asked every question I could and got a lot of good information.  Then after a while, sometimes I would post a question and some of the responses were downright mean.  It kind of hurt my feelings and I didn't post for a while - just read.  Now I kind of post like I am in my real life - kind of quiet but will ask questions when I need to.  Now when I post and get a weird response I just let it go AND consider the source.

Don't stop posting - we need everyone here!

[ladybug52]

Well, on the bright side you have kids to keep you busy. I have one senior son left at home but he's always at work or school. He plays soccer and while I've always loved to watch him play, I would much prefer a nice warm basketball gym this year!
Sounds like you're doing a great job with all that's on your plate. Good idea to just walk away instead of contributing to the argument. I bet that tongue gets pretty sore from biting it so hard! I think it's usually easier to bite the tongue than try to get the foot out of the mouth!
Hey take care, and slip the husband some of your A/d's!
Bug

[cajunlady]

Please do not be afraid to post.  I was intimidated when I first started to post here.  Some personalities stronger than others. I am usually mellow; but I can disagree with people at times.  I shoot from the hip as gentle as I can, say what I have to say and it is over.  I do not think people here should bring subjects into a full on DRAMA DEBATE!!! (for attention)(my opinion).  
It can be a very hard struggle on tx; not an easy thing to do; but if you hang in there and get the right rescue drugs for the sides you will be okay. Not say you have to have every single rescue drug they have for tx; just the ones you really need.  My rescue happened to be AD's and ativan.  I fought that for 12-13 weeks before I did give into the drugs.  Talk about THE PHYSCO BBBB+TCH FROM H*LL until I did.  My poor family and what they had to deal with.  I know what I am feeling and acting like, so I can just imagine what they were thinking sometime.  It all did get better.  Out burst were way fewer.  
Sometimes just a noise or a sound can trigger this physco/anxiety behavior and for no reason except the tx and how your body deals.

Please keep posting here; you will gain alot of knowledge. And, just ignore the idiots that you care not to communicate with.

Welcome to the forum.

Cajun

[cajunlady]

Thanks for asking. NOOOOOOOOOOOO he is not.  Wish he waaaas, that is going to have to be a suggestion from his doctor, before he listens.  Hope it happens soon, I am just about to SNAPE his head off sometimes. LOL LOL  I just try not to react in anyway to him, let him finish his rant or whatever is going on with him, then walk away and really want to go pull my hair out. LOL  Funny thing, I do not have much left to pull out and can not afford to loose anymore. LOL

We should be hearing from the Dr. at Stanford University any day now, according to his oncologist.

It is nice to check in here now and again.  It gets hard to stop and post sometime.  My oldest is in Basketball and Football in high school, keeping my youngest up in school work, waiting for all this poison to escape my body, and trying to handle hubby.  You Think One Day I Will Be Sain again.  ONE DAY!!!!  LOL

I have always been crazy, and I think that is what keeps me from going insane. LOL

Cajun

[ladybug52]

Glad to read your comments. It's hard when we know our actions are crazy but we can't stop ourselves. I'm glad I'm on a/d's.
How is your husband? Is he on a good antidepressant? Hope your family is doing ok, I know this is really a rough time.
take care
Bug/Janice

[compulsive]

You all are GREAT.

All your responses have helped a WHOLE BUMCH...

Because:

   There was a part of me that was wondering if I was imagining things happening on here - nope!  :-)

    There was another part of me that thought that "if you can't come up with something upbeat to say about your sx - say nothing"  - also nope :-)


    Never been so happy to be wrong on TWO counts before.... *grinning*

  Can't say that I'll become "chatty" here (but ya never know - I've not been myself lately!) but - your responses have convinced me that I might be a little less conservative about posting in these forums.


AND - Thank you all for your support and advice about how to handle the errrr "Forum conflicts"...  

The big cowardly part of me REALLY doesn't want to get in the middle of a "thing".  Seems like the consensus is to ignore it as much as possible - so I'll try to do just that.

[Htownwife]

I hope you don't stop posting! Your food topic post helped me (for one) a lot!
I'm not treating but my husband is, and it really helps me to see what others are going through. His appetite has decreased tremendously, and it is comforting for me to know this has happened to others and they have survived it! I never know if his sides are something I should be alarmed about, or are they normal sides for this treatment!  
The fact of the matter is that some are having less side effects than others, for whatever reason we may never know. We need to hear from everyone what their experience is, the good, bad and ugly! It helps to know you're not alone!
Keep posting, Compulsive!

[aquarius64]

hi everyone, it's me the newbie. how is everyone doing? i was afraid to post when i first came around, now i think i'm getting the hang of it. sometimes i want to reach in my computer and grab someone. when i feel like that, i just shut my computer down and do something else. when i have too much time on my hands, that can be a not so good thing. fortunately(or unfortunately,not sure which) i don't have much free time. my little ones keep me so busy. i am thankful for these forums, i just don't let the bickering get the best of me(for the most part). i have learned sooo much, maybe too much, but it is a great place to come and i won't be leaving anytime soon. my tx meds are supposed to be here this week, so they say. i just want to get this going and see where it gets me. good luck to everyone!

[ladybug52]

It's kind of like walking a fine line sometimes around here. I have strong opinions but I'm much more comfortable settling for the middle of the road and trying to not offend anyone. Not that I haven't offended anyone, my mouth always gets me in trouble. But I've learned to try to stay out of conflicts if I can.
This place has its ebbs and flows, I'm constantly surprised (though I should be used to it) when things go from friendly to UGLY!
Bottom line: don't be afraid to post your feelings. Conflict happens. This forum is the only place that ties all of us strangers together. The ties that bind us!
Bug

[Cindy10]

I agree with Jim, to much drama here and the meds can't be helping. We are talking about meds that mess with the mind. I think we all think a little weird sometimes on the junk (forgive the expression) we take.

I also think we should stick to tx, sx etc, leave personal opinions about religion and politics out of it (not you - but a few others).

I heard a saying once, take what you need and leave the rest behind.

Don't ever feel strange about posting good or bad days, thats what this place is for. You cant be worried about how others are going take it.

You hang in there hun ;-) and we are all here for each other!

[Imagine]

Please don't be afraid to post. This disease and the treatment for it is different for EVERYONE. No two people will go through it with the same experience. I think you just have to look at it as it applies to you. You should never feel "bad" to share your own experience be it good or bad or someplace between. If someone takes exception to what you say just voice your feeling about it and then move on. Use it as a strength exercise (you don't have to do much moving :)). I don't think you should ever be afraid to share. There will always be those that disagree but don't let that get to you. Keep posting. Tx seems to aggravate or magnify your emotions at times so be yourself it's ok. Don't sweat the small stuff it's our own health that is the most important thing.

[jmjm530]

You're more than "OK", in fact your story is one of the many inspirational ones here at MH. Unfortunatly, there is just too much drama here, some very understandable given the drugs we are taking and the topics discussed and some that really has no place her but for some reason is allowed. Also, a lot has to do with the internet and how things get interpreted and misinterpreted when relative strangers write to each other without the benefit of a true interactive exchange with voice intonation, facial expressions, etc. Anyway, please keep on posting because it would be a shame for you not to take advantage of the information and support and it would be a loss for all of us if you just disappeared. Try to simply ignore the bad stuff and/or let it roll off your back. Easier said than done, but doable. If nothing works, then take a vacation from here -- I have several times.

All the best,

-- Jim