I think that I should take a break from the boards...

[susan400]

I think that I need to leave the boards for awhile.  I apologize to everyone who I've been negative to lately.  I am not as selfish of a person as I may seem on here.  I do help others. My son, who is unable to reciprocate my love, who is seriously mentally ill, a friend with lung cancer, my cousin who has AML Leukemia, etc., etc.  I'm not all about me.  But, I feel that I am having trouble with being supportive with reguards to treatment and that makes it unfair to newbies.  I want to be supportive and everything that I say, if I'm truthful about it, does not seem supportive.  I'm having a hard time with it and need to quit coming on here for awhile.  I don't blame anyone for MY decision for treating all those times. I take full responsibility for my decisions and knowing the risks, I took them.  But, I can't stay on here and be honest about my experiences with lack of response to treatment and still sound encouraging.  When I can come back on here and be supportive without sounding so negative, I may be back.  But, I won't lie or sugar coat what happened to me.  That's not who I am.  I say the truth.  Finally, I think that treatment helps a lot of people and gives them SVR and protects their liver.  I still believe that. But, I do not think that it is best for everyone. I do not think that I made the right decision in doing the multiple treatments that I did.  In hindsight, I wish I had stopped at around the 3rd round.  Take care everyone.  I'll be thinking of you.

Susan

[scubadiver30]

Madrid, please drop by if you ever come back to Spain :-)

saludos
scuba

[Magnum]

Gonna miss you Susan. After all you've been through you deserve a break. I will say a prayer tonight for you to get rid of this problem once and for all, and to put your mind at ease. Drop us a line once in a while to let us know how you're doing...

Your friend in arms,

Magnum

[DougV]

Come on by.  Where in Spain?  Think I'd rather come visit you, been a long time since I've been there.

Doug

[scubadiver30]

Hi Doug
I'm not from Florida or US but my wife's cousins live there and we go visit quite often.
Wouldn't mind paying you a visit someday :-)

regards from a fellow hepper in Spain
scuba

[PasoPerson]

LOL big time.  I think you're onto something there.

[sfbaygirl]

We could just fill some bowls up with tranq's, AD's and sleeping pills, sort like a Pharm parties I have heard about. If someone gets Riba Rage and outta control, we just pour some of those pills down um'.

[PasoPerson]

NOOoooooo, please don't go!  Please reconsider leaving this board for awhile.  Between you and Friole ... I have valued your input, your friendship, your wisdom.  AND who said you have to be cheery all the time?  RIBA RAGE is rampant (say that 3 times fast) among most of us, being happy all day is NOT among most of us.

You have a lot to offer, and I for one am a person who's been helped by your input.

Just food for thought.

PS everyone - I'm in Florida too ... a Florida cracker if you will, born and raised in south Florida, now in Ocala.  Maybe we should have a Florida Hepper Convention ... at DougV's digs!

Carolyn

[DougV]

Carolyn,

Ocala must be a popular hepper place too, already met one couple from there.  They come down to eat down the road with family so I actually got to SEE someone for a change.

Several of us did talk about getting together just never pulled it off.  Sometimes it's nice to put a face to a name.  Plus, come on as a group we gotta be pretty mild mannered, don't drink and most of us ain't exactly spring chickens.  Worst problem would be someone having RIBA rage and heck I'm sure between us we have plenty of drugs to sedate them.

Doug

[Snookmiester]

I'm not sure if you have ever been over to "out of bounds", but I'm sure that one particular lady there can relate to what your going through.. Her name is Kathi...She has done tx 5 times, I believe this is her 6th, and is currently undergoing daily infergen for two years.. During her first 5 tx's, she never went undectable, if I remember correctly, and now with infergen she has been undetectable for like 12 or 13 months.. Kathi is one of the strongest, most inspirational people I have ever met.
the link, is www.hepcoutofbounds.org
Kathi is the co host, and you can usually find her in chat. Tell her Snook sent ya...

[DragonSlayer45]

I agree with a lot of the comments here. #1 I never sensed that you were negative at all. #2 I am not interested in sugar coated information, I appreciate it when people are honest. if you had a rough time on treatment, tell people, if you had no sides at all tell people. I really feel bad for you because you have treated so many times and for all that you have going on in your personal life, you definitely have a full plate girlfriend. I hope you stay and continue to share your experiences with all of us.

[cuteus]

it is so much easier to give than to receive sometimes, but you have to let others give to you, for their own good.  
Yours is a special case, given the many times you have endured tx.  If you were looking for SVR, I think you are right that 3 tries would have been enough to realize it will not work on your strain. But if you were looking for histological improvement, that is another story, and since it did not happen in your case, tx might have been the worse thing for you, given the post tx issues you are facing, but that is hindsight and you tried.  take a break, but not for long.  Your experiences are not matched by anyone else here and can not be related by anyone but you.
take care

[merlino]

Hi, the Dr.'s office didn't tell me anything except get blood work prior to 10/3 appt. and they will order meds same day as my visit. Have everything pretty much in order. Unless things change during my appt. 10/6 is the DAY. I am starting to panic a little!! Been eating everything in site trying to put on a few last lbs.

[Dale_Ray]

Dear Susan; While I understand your concern for newbies please remember there are several of us oldies that have gained insight from you and value your friendship and support. The load just seems to have gotten heavier on you lately and we are here for one purpose, to pull one another through. I perceive myself as one thing but others tell me they do not see what I am seeing. This medicine can and does play terrible tricks on our self perception and our own realities. Please remember we are about the only ones who understand where you are at and can completely comprehend and understand what you are going through. You've been a bud and I like to hang onto my buds. I started my journey with you here and I'd like to end it with the same crew. Love ya, Dale

[FlGuy]

How's it going, getting all those ducks in a row?  All the rx's in some stage of progress? Any insurance speed bumps?
Have appt with tx doc and endocrine doc early next, will get baseline blood work and the rx's for the IFN and Riba.  Meet with the hemotogogist about 10 days before tx begins.  Calm before the storm kind of stuff.  If you still plan to start 10/6 will be 1 week behind you.

[NYgirl]

First off ----- we ALL go through moods and you'Ve seen me act like a complete AZZ at a whole bunch of times...this disease is **** and we go through.

Take a day or two off and regroup but don't disappear altogether. I had to do it too. Otherwise you might start to isolate or something and you know what that will do.  We have the tendancy to take EVERYTHING straight to heart and magnify it big time.

You've been through too much.  You just have.

I have the feeling (and no I'm not being negative) that I might be hanging around here for a long time to come and I would HATE it if it's just me .... so please just take a little break and then post again becauseI would miss you.

We've been through too much together, unfortunately, but it's been good to have someone so wonderful to go through it with.

Debby

[friole]

susan -- golly girl, I would miss you.  Don't believe in sugar coating myself -- If I did, I would have said -- Susan - go on, take a 10th treatment of the same stuff -- or continue with the same treatment - do 40 more.  Instead my take has been stop, wait for new meds or new studies.  Let your body heal.  Susan, people need to know there are highly resisitant strains of Hep C. They do need to hear your story.

But furthermore, you can't leave us hanging in the soap opera I call MedHelp.  We need to know your post tx symptoms.  We need to know how you heal and what happens.  Whatever you do, keep in touch.
kathy

doug -- you're my kind of guy.  You can do all the cooking.  Wish I lived in Florida

[merlino]

I wish you the very best Susan. I think you have tremendous courage for all you have been through and  all you are still  dealing with.

[mikesimon]

I want to wish you good luck Susan. I've admired you for quite a long time but I'm sure you know about that. If you feel like stopping by this place will be here for you and you'll always be welcome. Mike

[Paris47]

I want to say something, and just don't know what to say
except ....I can relate only too well.
good luck, hope you get back here if you want, if you can..
as I said, I only know too well what you might be going
through, my thoughts and prayers are with you!

[Snookmiester]

Susan,
I truely understand you position..The thing you need to realize though, is nobody wants the sugar coating....The honesty is what is needed. There are different perspectives, different points of view, and everyone of them is warranted and needed to give the best "full" picture. HCV sucks, treatment is worse, but we grit our teeth and deal with it the best we can..I'm sure all of us wish we where dealt a better hand in life, but we can't look back. All we can do is move forward. I know that all those rounds of tx must have played their toll on you, and you question why? But Susan, you're a fighter!!!! Don't ever question why, because you did what you had to. We can't turn back time and make changes to the past, only learn from it.
I wish ya the best, and hope you stay around to keep dishing that "honesty"...

[amirtracy]

susan,
i just wanted to wish you the best. btw, your opinion is warranted and much needed. no need to sugar-coat. it's vital and people need to hear the truth. take care and don't stay away too long.   tracy

doug,
hello from orlando florida. I like you. alot.
There's many here from fla like beagle and flguy, snook, roaming, susan (who posted this thread), robbetz, many more...
So welcome to you!    tracy

[GoofyDad]

I too think it's important that your story is heard. There's a point for everyone at which tx is not worth the risks and degradation in QOL. We all draw that line in our own different places, but I personally would hope this discussion kindles folks to question whther tx is right for them at this pont in time. Doesn't matter whether it's a first tx, or 7th, it's a soul search that should have its fuse lit.

So please don't feel that your posts need to cross some imagined hurdle of positivity. This is a sucky situation, and it's senseless to pretend otherwise.

I think that's why the poop threads are so popular.... fecal matter is an uplifting breath of fresh air. Know any good fart jokes?

[Forseegood]

always good to see you! this thread is making me hungry, I say go all out if it's a holiday!!!! anyway, did you happen to see that shot of Tiger at the Masters on the 16th hole? YIKES!!!!

[anise]

I am sorry you won't be frequenting this site.  Truly I will miss you.  You had wonderful  interesting information post treatment.  If anyone knows about treatment, it is you, and I always respected your input.  You got me thinking.

I wish you luck in your life situations, I understand taking a break to deal with other family, etc. issues.  But let me tell you, you will be MISSED!