I may have been sick but I wasn't dead

[jmjm530]

Anyone find themselves like completely excluded from family or business stuff while on treatment?

Recently, I found out about a whole bunch of family stuff going back about 8 months where "they" decided I was best left out of any decision making because I was sick and treating. You know for *my* benefit.  

I wanted to tell them -- hey, I was sick, not dead. Maybe I couldn't do this or that but at least tell me and give me the option. Do you guys think laying all this on me now makes me feel any better? Thankfully, the riba is leaving my system as I used every once of self control I had not to say something that would permanently stick.

I have a feeling this is how the world often treats the sick. By shunning them either consciously or unconsciously. Gosh, I hope I will never do that.

Coincidentally, as my treatment ends, just got a call from what I thought was a close friend -- hey knew him from childhood. Well, he sort of became MIA after about week 12 of my treatment. One day he asked me how I felt and I guess I didn't hold any punches as I described my anemia, nausea, eating disorders, skin problems, etc. LOL. I guess now that he heard through the grapevine I'm back in the saddle, it's OK to be friends again.

Big difference between friends and activity partners and often hard to tell the difference until s*hit hits the fan. From my experience the former are pretty rare.

Well...got that off my chest :)

-- Jim

[sunspot]

A friend will help you move. A real friend will help you hide the body.

[friole]

Got to agree with your assessment.  That's why I am, for the most, in the closet.  I am sure if I had told family, they would have not come over for holidays and left me be more than I wanted to be left.  Same at work.  Altho I am sure all my co-workers know I am not on top of my game, none of them feel sorry for me because they don't really know the cause.  Fortunately my tx has been mild enough to carry this off.  I know that many here who are not so fortunate.

Sorry about your fair weather friend.  Reminds me of that old blues tune "nobody knows you when you'r down and out"

[Dale_Ray]

Sunspot hit it on the head with her comment. Same thing for me in many cases they just don't want to intrude or they know I need my rest. Truth is I'm not as much fun as I used to be so they took me out of the race. I think all of us have had this happen to us with friends and family. It's nice to be asked for your input by the family even if they don't use it. My standard reply to family and friend when they ask how I'm doing is Great, just like Tony the tiger. Then I ask them how they are doing. I'm going to get a Hillary Clinton mask and start wearing it so they will think something is really wrong with me. There's a woman that could eat corn on a cob through a cyclone fence. PS I'm a demopublican too.

[52TELE]

Sooooo true. After I was diagnosed with HCV , like most ,I had no symptoms , but people felt compelled to ask "how I was doing". I was fine and told them so.They treated me like I was about to die and didn't understand why I was doing so well.  Now when asked how I am doing , after I say "fine" , the ones that really care say , "how are you really".

jmjm530-Mrsockert , how are you really?

[jmjm530]

Mrs sayhs: I know exactly what you mean about the friends thing, tho. I've had "friends" ask me how I'm doing then walk away in the middle of my answer. I've had to realize that few people really want to know when they ask. Most of the time all they want to hear is "fine."
-----------------------
Aint that the case. LOL. One relative starts out the conversation by asking how I feel and before I can answer starts telling me about how many problems they have.

My poor shrink. Not sure how much he's helping me work through any psychological issues, but for the last year I've had a 45 minute captive audience where I could unload and unload about how bad I feel and about and what sh*ts half of my doctors are. At one low point, I think I was able to go non-stop without hardly a breath. LOL. I guess the morale is sometimes you gotta pay someone to listen.

-- Jim

[MrsOckert]

Thanks for the laughs!  I really needed that!

:)

I'm fine.  thanks for asking.  And I look good, too.

[jmjm530]

As a related thought...so what do you do with these "friends" and relatives that once were, then weren't, and now want to be again. I know what I want to do LOL but I also don't want to become a recluse which I've gotten pretty close to this past year. Throw it in their face and tell them how you feel -- well, that doesn't work in my dysfunctional family. Forgive and forget? Find some new "friends" who probably would end up doing the same thing? Yup, this must be post treatment. Welcome back to the world.

[bobbyullc]

i just got a call from a friend asking if i would talk to her recently diognosed neighbor. she mentioned she may not want to talk as she is so ashamed of having it? i hear that too often and it is a shame. this is a sickness not a criminal behavior. hey everyone....i got hep c.....so what.
bobby

[mikesimon]

When you spoke about your "friend" or "activity partner" I was reminded of a time when I was so sick and alone at home watching my TV when a black Preacher with a Neru jacket appeared pointing right at me saying: "You can get sick but don't stay sick tooooo long cause people get tired it. When you first go to the hospital you're getting gifts and flowers and visitors all the time but after 6 months or so no one wants to know you anymore - they're tired of you being sick". Man, that Preacher was talking to me. I knew just what he was talking about and I suspect that maybe you do too. As to being cut out of the loop: I think that's okay and really shows that they love you enough to want to protect you. Of course we men have a lot of trouble when we're not fixing all the problems but, believe it or not, the world goes on just fine without us occsionally. You've got a great family and I will bet that the better you feel the more they'll expect from you. I hope so anyway. Stay well Jim. Mike

[can-do-man]

Oh my gosh, you mean you had hep-c? Next thing i'll find out either everyone here has or had this thing. And here i thought this was a hep board. You know like cool, hep and groovy. Well i never. Hope i didn't catch it though the puter. Can chatting that way cause it? I better run a virus scan on my puter, heck it might be infected.

Serious though, only a very few at work know. and they have been great. Never covering their mouth and nose when i go by. But do on their own help me with my work. Even though i don't ask. Friends has also been good but just very good friends i've told. Have had a couple family members that act different. Just grew tired of explaining it over and over.

[timedog]

I think I understand your anger (dare I ssay that). But I would venture to say you might try to be a bit understanding of others outside of our world or problems. I would like to believe thatfriends and family do the best they can. I would like to believe that they were and are trying to be helpful not hurtful. Jim I have seen you express a lot of compasion for others here and I have to think that same approach would be helpful with friends and family.

I grew up around a lot of illness and know from experince that it  is a hard think for many healthy people to deal with. I try not to be too judgemental.  It is impossible for someone not going through what we are going through to understand or to know how to help. I go through this with my girlfriend on daily bases. I want her to know what I am feeling with having to tell her. I feel like she should know by now its been 8 weeks.

I don't know you are your family but if they are anything like you come across here I am sure they are thoughtful caring people who only have your best interest at heart.

what ever! from deep deep brain fog

[dyce]

Ha jim, if ya can put up with my brain fog, my best pal hasn't called since I started tx and I know for sure he knows . Kind of disheartening people think the ole dyce is out of it. At work I told a few and they've accepted it and they know the tx is messin with me , because of my performance has slowed down. Nobody knows what the meds do to us but us ! My grandmother didn't even want me around when she 1st found out , now how bad can it get when granny thinks your a leper or sumthin . Oh well life goes on . Thanks for bringin this to the surface , least I know I'm not alone here.

[MrsOckert]

Well, haven't found out about any family stuff....but that may be cause I'm still in dark.  LOL

I know exactly what you mean about the friends thing, tho.  I've had "friends" ask me how I'm doing then walk away in the middle of my answer.  I've had to realize that few people really want to know when they ask.  Most of the time all they want to hear is "fine."

The one thing I've learned through this whole experience (for myself anyway) is how to talk to sick people.  Ask leading questions and give them an opportunity to talk if they want to.  There've been many times I wanted to talk about it and no one wanted to listen or they want to tell me about how they've had it worse/better/sicker whatever.

I've had sooooo many people tell me "how good I look".  I feel like ****.  I really don't want to hear "how good I look".  It's almost like by saying I look good, then I can't really be that sick.

ARRRRRGH!  Thanks for giving me an opportunity to vent with you.

Valorie

[Forseegood]

well, that's a grabber of a headline if anything!!! you know, my problem is almost the opposite, and I dont want to sound boastful, but I myself am shunning friends, whether consciously or unconsciously, and it's something I'm talking over with a wonderful psychiatrist I've found in my area...who actually does "talk" therapy and my insurance pays for it (many psychiatrists now are just for the most part very educated pill proscribers)

maybe I'm kinda ashamed I have this? (they all know and are fine with it though) though not overtly...and maybe I feel they are the "pictures" of health as they go through their lives, their vacations, etc...and I don't want to be jealous or at least envious and being around them makes me so? who knows?

but I think I'm hurting some people's feelings who have never done anything to me to where they deserve this kind of snub from me...I've always been kind of a social animal and I've managed to meet a lot of really great people and I don't want to lose them as friends... I guess I just don't want to socialize like I've had in the past - But I at least can blow in a call now and then, for that I have no excuse...anyway, saw your "by-line" and I thought I'd blow in a hey, how you doin? to you anyway...hope youre feeling progressively better, I have no doubt...stay away from the wasabai this week...

[Forseegood]

oh, and I can totally see why Goof would be off enjoying his newfound freedome from the meds, but I still do miss em...

[GoofyDad]

Missin' you too kiddo. Neither one of us is around as much as we were, huh? I pop in nw and then and always look for ya. Are we ever going to see your smilin' face up this way? Be nice to see you 'fore ya get all hairy 'n stuff.

[GoofyDad]

I was out traveling and missed your relapse report. My head reeled. I realy feel for you -- a reminder that it can and does happen. Your positive outlook will carry you through this.  

Curious about your enzymes. Were they always elevated -- or do you know when they started to rise?

Best wishes my friend.

[FlGuy]

Good to hear from you. All will be well. Just a longer investment than I anticipated, or wanted.  About a week before end of tx ast/alt were 29/37. 3 Months later, 51/72 and reconfirmed at about that level a few weeks after that - four months post tx.  Then, about a week ago, 5 1/2 months post tx and before the 'News' they were at 36/60.  Not off the chart levels by any means.

[cquest]

Thread from below: yes, one rubber room please, to go...I just had the biggest fight with the dog warden this last weekend over my ex-husbands dog that he left here while he parties w/ hookers in Costa Rica...oh yes...I shouted at her not to lecture ME...yada yada yada...the dog is back home...

Anyway, speaking of 'looking so good' somebody at work asked me how I feel, same old question and of course I said well if this esophagus thing would clear up I'd feel better and she said 'But you look so GOOD' and I said well that may be so, but I don't feel so GOOD and she said it again this time with more vigor that I looked so GOOOOOD...around and around we went...and finally I said 'Forget how I look, it's how I feel and that's pretty crappy' and she shut up...oye...
Cin

[BronxRican007]

Brother,

I hope you're feeling better!

I know exactly how you feel.  Nobody tells me squat for fear of "stressing" me.  However, the junk I do hear, I wish I didn't. So I guess it just balances out.

I'm hanging in there, I have 3 months left ... tx seems to suck more, the closer to the end of therapy that I get. I'm going through bottles of Gold Bond lotion just to keep from scratching my skin off. I've just started losing my hair again too.

I'm begining to get tired of being sick and tired...but the alternative is unacceptable to me. So, I still keep fighting.

Take Care
br007
PS...I'm gonna be pissed if this tx doesn't work ...LOL!

[Forseegood]

Timedog: do you, by any chance, study Buddhism? you have the reason and compassion of someone who does, just wondering...

Cquest: someone told me a long time ago now in a Hep C support group...just tell them this is the "Look Good - Feel Like Sh*t" disease...that about explains it...

FlGuy: you and so many others here who have relapsed, Kalio, some others, really prove how strong the human spirit is...you just keep on plugging and helping others, God bless ya for it...this too shall pass, you'll look back on this like everyone else...

Goof: yeah, I know I keep threatening to go up north, Califia's already telling me where we have to go to get the pies...so if anyone here wants to make up the 4th Stooge,(anyone live in No.California?) though I never liked Shep...like the Stooges when it was just Curly Moe and Larry...just keep a lookout when you leave your door in the morning...it'll prob be sooner then later though...hey, do you have a George Hamil-tan? now that youre back from whence? did you remember to bring us some vacation favors? all of us?

Jim: hey, I was in the Vitamin Shoppe yesterday and I was looking to buy a new greenie powder, (and no Goof, not THOSE kind of greenies) to just give me those constant shots of anti-oxidants throughout the day, you know....some of us get our kicks in the strangest of ways...and I remember Rocker Dude told you about a greens powder, do you remember what it was? Rocker if youre reading this???...

[jmjm530]

Thanks everyone for the input. I was probably a little cynical about human nature before treatment, and this experience certainly hasn't helped. I hear those who say "don't judge". Usually I'm really good about this, but when it hits real close to home, that little riba voice in my head just gets a bit pissed off. Treatment among other things is definitely a growth experience -- physical sides aside -- none of us will ever look at things the same way. This is good but it also can be painful.

-- Jim

[OnAPrettyPoison]

It is amazing to find who your friends are.  I am alot closer to family that I chose than family I grew up with.  I am so much more likely to confide in them.  I feel closer to my friends on the forum while fighting this disease, I know they understand the fears, stress, and drugs - than the others directly in my life.  I have only one real life friend that has treated, one that died of liver cancer from HCV, two that have been diagnosed that haven't yet.

[OnAPrettyPoison]

Here is the link Rocker posted for the vege greens.  I bought the GNC version and I have to say it does make you feel better:

http://www.befit.ca/vegegreens.html