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

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

[Forseegood]

dear Susan, just wishing you the best of luck in whatever you decide to do...

Personally speaking, and I mean no offense, I think youre being a bit too hard on yourself...your posts do help a lot, and you shouldn't be ashamed if you cannot be all Raah Raah all the time about threatment, we all need all the perspectives here to make the right decisions for ourselves... the good, the bad and the ugly...in my view...

We should all know that this is an individual thing, and one person can have a bad experience and many people can have good or moderate expereinces, this is not one size fits all type of treatment, from what I can see anyway...

I feel so bad about the things you have to endure in your life right now...but just your example helps me out, I'm such a chicken-little-baby about things, looking at your experiences makes me know that things can be done and we do come out the other side, though a little chafed in the process...really, the best of luck to you...

[fishdoc]

hope your not gone yet... this is one reason  I am having a real problem with this forum, too many people dictating what this is supposed to be about, instead of just doing their thing and letting others do theirs.  The truth of the matter, support and optimism and honesty are not mutually exclusive.  Telling someone "oh you'll do fine" or just pray and you'll clear or treat no matter what... those are opinions, and what the newbies really need is the voice of 1000 experiences, not just a few dominant personalities that have their own opinions... because thats all it is.  Every perspective needs to heard, thats called an open and honest dialogue, and its how intelligent people form their own opinions.  If we're not going to listen to everyone, we may as well decompress into another political discussion, where facts are few and propaganda is the order of the day.  I for one feel the experiences of the old grey mares adds to the board, and as long as opinions aren't hurtful, they should be expressed...

[jmjm530]

Not to compare my treatment experience at all with yours -- but as someone who has had a difficult time both during and post treatment, I fully understand what you are feeling and saying in regard to posting your experiences.

That said, I've read many of your posts and never picked up anything at all negative or non-supportive. What I did get was a sense of honesty in regard to your treatment journey. IMO this type of honesty is what everyone here needs -- newcomers or not -- to give us all more information whether it be in regard to a treatment decision, or just wise words from the trenches for those either in them or about to enter.

Of course, you should do what is best for you, and a break sometimes is helpful. But I think I speak for most when I say you have been an asset to the discussion group as well as an inspiration for many. We need all experiences and points of view here, especially yours.

All the best, and hope you start feeling better soon.

-- Jim

[slowsouthernstyle]

you don't know me but I have been around here for a long time and i always heard that you were treating one after another after another.i wondered what kind of doctor would allow a person to do that.it is amazing that you are still alive after so many years of putting that **** in you.i feel the same way as you do that the truth should be told about the treatments for hepatitis c and that is why i don't say to much about my experiences but i had a awful time with the side effacts but i kept on working and never let it get me so down.these drugs are very bad and for some people it can do more harm than good.i do not believe there a lot of new people that come here so don't worry about that.slow

[FlGuy]

Just remember, this is not only a place to give support but to receive it as well.  Good luck Susan.  Even if you're not around as much, I'll think of you often. Hope to see you again - any time.

[DougV]

I'm new to this site, alas not new to hep.  There are two reason I log on to any hep site.  One is just in case someone has heard something I've missed on new treatment options.  But the other and most important is to help others.  I've got all the support I need, good family, good insurance, good friends, and fortunately adequate money to handle the health issues.  Hep or not I consider myself extremely blessed and lucky.  That being the case it is actually important to me that I help others, my way of balancing the scales if you will.

So if you or anyone else needs support I personally would hate to see you leave because you feel you are being selfish or self-centered, because then I feel like I fail at supporting you and others that need it.  There are those who need support and those who need to offer it, the perfect symbiotic relationship.

Wish I knew you better and hope if you stay so get the chance, and priviledge, to do so.

Doug

[fishdoc]

Doug thank god, someone that knows its all about me!!  Finally!!  Have I told you about my rash??  Have I told you about the horrible riba itch??? MY EARS have to be lubed three and four times a day.......I f@rt all the time.. oh never mind, thats not tx related..  sorry, couldn't help myself.... you have a great attitude.... this was your sense of humor test?? did you pass??

[Tater-ToT]

Awe Sweetie.. I Think FlGuy Said It Best.... It's not all about giving, it's recieving as well....

I feel your experiances are all to important for you to leave... being a fellow combo relapser, you have always been an inspiration, & admiration of mine.... You have ALWAYS answered my questions honestly & matter of factly...

Although I can totally understand where you are coming from, & I know my mere two rounds are a walk in the park compared to what you have endured... but you are a wealth of information as are many others here... I consider you an experianced honest major contributor to this board...

I tip my hat to you all of those like you!
Folks like you, jm, cutie, rev, snooks tnhepguy, califia mike simmon, dalfonzo... ect that have the ability to consistantly give your luv & devotion to this cause, & share your experiances... (& If I left anyone out I deeply appologize) but hope you understand where I am comming from)... I mean newbies come on & ya'll don't ever seem to mind answering what I am sure must feel like the same ol relentlous questions!

I have the uttermost respect for you & hope you will reconsider, but understand & respect your decision with what-ever you decide....

Gezz... & I even had some thory's on our genotype too but was waiting till Thursday depending on results to present them.... Please reconsider, but in the interum... please know that my thoughts are & always will be with you!
Sincerly... just little ol me!

[Morgaina]

Did you read that box of chocolates thing? You're one of the sweet ones in there, just have been bumped around a bit too much. The truth is what we look for and what we need. You are an inspiration, nothing near negative!

[DougV]

Oh yeah fishdoc I passed the humor test.  Humor is the best medicine, my problem is having to restrain myself.

And I gotta know, fishdoc have any meaning?  Among the zillion odd things I've been involved with aquariums and aquaculture are two of them.

Doug

[Tater-ToT]

psst I ment utmost...LoL

Anyway Susan... the board just wouldn't be the same without you!
:)

[fishdoc]

actually I am what is known in the business as a fishsqueezer..not so much aquaculture as the genetics end of things... shall I say a glorified matchmaker??

[beamishboy]

restrain yourself and squeezing the fish.....y'all talking about my personal exercises agin!!!???......
SUSAN-i think your being way too hard on yourself -your experience&perspective are priceless here!!....imho

[fishdoc]

Hey beamer, glad your sounding so chipper...love the rock thread..holy schist batman!! Great vats of molten magma! Hope your stalagmite isn't mistaken for a fish, well unless you want someone too......

[FlGuy]

Do you talk dirty to them to make them want to do what you want them to do?  Someone (Algae? mentioned Alan Arkin in the non-hcv post yesterday ) do you have his errr, situation in one of his more famous roles?

[fishdoc]

uummm don't know HIS situation, but I can think of one thing he's got I don't...Hate to say this FL guy, knowing where you come from (bikini strewn beaches).... talkin dirty is probably not the easiest way to get folks to do what I want!!!  Now knockin em over the head with an axe handle...that might work!!

[DougV]

Oh no, another Florida hepper, must be the water.  Me too, in Land O Lakes.

Doug

PS Avoid sturgeon, them suckers got teeth.

[Pdilly]

I do understand about how easy it is to overload on what life deals you.  I too went through 6 deaths of family in 8 months, 3 heartattacks and 3 cancers.  Right after that I found that I have HCV.  There are times you just don't feel that you have the strength to continue but somehow you pull through.  Do take a break if you need to,  but do come back.  You have not been as negative as you think and we really do enjoy your advice negative or positive as it may be.  Not all negative is bad and actually sometimes it is quite positive.  You have been there for us and maybe it is time for us to return the favor when you decide to come back. Sending prayers your way.

[FlGuy]

There are a lot of us Florida folk including Susan, Beagle, Snook, I Will Beat and others.  I'm near Lauderdale.

[DougV]

I know quite a few folks here in FL with hep.  Just for the record, if anyone is in my area and needs help with anything, ride to the doc, company, lunch, or heck, Friday's I generally cook a pretty elaborate meal and anyone is welcome with 24 hours notice, whatever, I'm available.  I guess I'm not allowed to post my email or phone number here but if someone wants it let me know I'm sure I can get it to them.  My stats are happily married, 17 year old son, male, had 22 29th birthdays, 1a, liver 3/3, relapser, compensated and symptom free, mildly insane.  I've also got experience with end stage care and hospice care as I kept my bro-in-law with me here for three months prior to his passing.  My wife is used to people calling and emailing with hep, both male and female so no problem there.  Well unless Angelina Jolie happens to have hep and calls, her well maybe she wouldn't be so cool about that.  I'm retired so time isn't much of an issue with me.  I do confess to being an odd duck, but a nice one. <grin>

Doug

[GrandOak]

Sometimes purification means we have to go through the fire to remove the dross and the only way to the mountain top is through the valley (sometimes the one of shadows and death).

If we are never tested, we never know how far we have come and will not realize how much farther we've yet to go.  But we can rejoice in knowing that we will never be tested with more than we can handle and an escape is always provided.  Many of the fruits of the Spirit seem to only ripen under these trials.  Perhaps why Paul rejoiced when receiving them?

This may be a mystery to some, but somehow I think you understand.  Everything fits The Plan and our part was decided when the stars were being placed.

Last week I was led to Rev 12.  An interesting read, particularily since it talks about the red dragon, his defeat, his fall to roam the earth, and verse 11 in particular describes how it was achieved.  The part that really struck me about it were the many references to the red dragon and how hepos often describe our fight as battling the dragon.  Hence, in the passages, the red dragon becomes the blood dragon.

So take heart, realize that the battle is not entirely yours, and in the end:

Rom 8:26-33 [AMP] "Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered. And he that searcheth the hearts knoweth what is the mind of the Spirit, because he maketh intercession for the saints according to the will of God.  And we know that all things work together for good to them that love God, to them who are the called according to his purpose.  For whom he did foreknow, he also did predestinate to be conformed to the image of his Son, that he might be the firstborn among many brethren. Moreover whom he did predestinate, them he also called: and whom he called, them he also justified: and whom he justified, them he also glorified.  What shall we then say to these things? If God be for us, who can be against us?  He that spared not his own Son, but delivered him up for us all, how shall he not with him also freely give us all things?  Who shall lay any thing to the charge of God's elect? It is God that justifieth."

[sfbaygirl]

Hey, how about us California folks, are we invited for dinner too? I am usually hungry on Friday night? What's for dinner?

[Mister beagle bailey]

Susan, Flguy said it best and I hope you return to the forum.  I can't imagine what your going through, with all your relapses.  Please reconsider leaving the forum.

Flguy and Doug-  Yes, there are many here from Florida.  Also ameritracy is from Fl and I bet there's many more.

Beagle

[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'.

[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!

[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!!!!

[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?

[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

[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"...

[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!

[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

[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.

[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

[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

[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.

[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

[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.

[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

[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.

[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...

[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

[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]

Sure come on by.

Let's see, this Friday, not sure yet, but start with Cheese or Chicken Tortellini in chicken broth.  Salad romaine and what every fresh stuff catches my fancy or sometimes simple Ceaser and I do make my own dressing.  Homemade rolls or I might do Italian in which case my son will also force Bruschetta.  Snow peas, carrots, onion, brocolli, zuchinni stir fry.  Probably a pasta, not sure which one yet that is a Friday decision, but most likely with either homemade alfredo sauce or perhaps a tomatoe double cream sauce.  Leaning towards a bone in prime rib roast with a mustard/pepper rub that I'll start marinating Thursday.  Not sure about dessert yet.  I let my son and his girlfriend make that decision but I may push creme brulee as I like the smooth cool creamy taste as a contrast to the spicy meat with dinner.  Every Friday is different, sometimes Italian, sometimes Spanish/Cuban, sometimes French, sometimes Cajun or Creole, sometimes old style Southern cooking, sometimes a mix like above, sometimes Mexican, etc.  Usually four course but nothing firm about that.

And I promise, only the freshest ingredients and not one single thing will come from a box.  Only have some Rosemary growing right now, but usually grow a half dozen fresh herbs to use.

I do most of the cooking (self defense) and Friday is my more elaborate day.

Thanksgiving and Christmas are open too.  Usually have 20-40 people show up (Most of the times I do know most of them) so seating is pretty random, inside, outside, bar counter, floor around coffee table, whatever.  Oh and starting Dec 1 I traditionally cook one different sweet each day, candy, cookie, cake, or pastry until Christmas day, oh which also always includes homemade cinammon rolls and pecan sticky buns.

Warning, I use sugar, butter, pork fat, ham bones, cheese, or whatever I think works and tastes best, oh but I use very little salt if that helps.  Rest of the week I'm careful, but Fridays and Holidays taste is my only consideration.  However FWIW fire rescue is close by.

Not a pro, just love to cook.  Instead of anti-d's or other meds cooking is my therapy.  Been doing it all my life and have traveled all around the world so I like a wide variety of foods.  Weak on pretty, pretty good on taste.

And believe it or not I even clean the kitchen and dishes as I use them.  Unfortunately due to hep I am otherwise extremely allergic to other household duties.

Doug

[PasoPerson]

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

[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

[DougV]

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

Doug

[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

[scubadiver30]

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

saludos
scuba