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Medical Forum / Diseases and Disorders / Hepatitis / June 2008

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Do others GET what you are experiencing on TX?

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TX-012 - 28 Jun 2008 01:12 GMT
Just a question for those on treatment, or for those of you who have
gone through the process--how well did those close to you, in your
estimation, comprehend and appreciate exactly what you were enduring
while on tx?

In my case, while I have a few very supportive individuals helping me
out, I feel...much, if not most of this experience remains...very
difficult to adequately communicate...or be understood, by those who
have not actually...walked the walk...
greyhackles - 28 Jun 2008 01:41 GMT
>Just a question for those on treatment, or for those of you who have
>gone through the process--how well did those close to you, in your
[quoted text clipped - 5 lines]
>difficult to adequately communicate...or be understood, by those who
>have not actually...walked the walk...

Before beginning treatment, the carpet to my office was worn out by peeps
lining up for help and guidance - being the senior engineer in a company of
roughly a thousand technoid dweebs it was my lot to provide counsel to pretty
much everyone, from techs through code monkeys through marketing veeps. The
flood didn't let up a bit until I got worn down to the point that I was taking
naps during lunch time instead of padding down to the cafeteria to join them
at the communal tables.

I'm not sure anyone can truly comprehend what battling dragons entails. And
I'd have to say, that until I had lost 40 pounds, was just able to put one
foot in front of the other, and looked like death-warmed-over, coworkers
didn't really understand that I was in the depths of treatment. Once I got to
that inescapably obvious point, however, folks generally got the clue that
this was a battle royale I was going through, and began to cut me just a
little slack - and let me snooze in peace.

That said, nobody ever relaxed a stretch-goal, never mind a deadline, or
picked up any of my responsibilities. That mid-day nap invariably cost me two
or three times the on-line time from home to keep things moving apace.
Management has little sympathy for the plight of the worker-bees, after all -
their bonus plans ultimately trump employee health, regardless.

On a more positive note, family and friends didn't have dollar signs ruling
their behavior. Thank goodness. They were much more sensitive to the changes
they were witnessing as time passed, and far more willing to extend themselves
to help me along the way. Without them, I suspect the sheer weight of
treatment would have dragged me much further down then it did.

So...basically, for some folks, treatment just beats the snot out of you, and
you just have to keep on keeping on, regardless, and take what solace you can
gain from those few who have a clue, and don't waste energy holding a grudge
against those who don't.

Hang in there, kiddo...

/greyhackles
TX-012 - 28 Jun 2008 02:36 GMT
> >Just a question for those on treatment, or for those of you who have
> >gone through the process--how well did those close to you, in your
[quoted text clipped - 42 lines]
>
> /greyhackles

Thank Ewe;)
Waterspider - 28 Jun 2008 04:40 GMT
> Just a question for those on treatment, or for those of you who have
> gone through the process--how well did those close to you, in your
[quoted text clipped - 5 lines]
> difficult to adequately communicate...or be understood, by those who
> have not actually...walked the walk...

Impossible to communicate, impossible for anyone to understand unless they
have been there... but you could say the same thing about smashing your
thumb with a hammer :-)

My boyfriend was a rock. Although only here on weekends, he cooked and
cleaned, ignored my craziness and hid my guns. He came as close to
understanding as anyone who hasn't been there, and I think the reason for
that was I shared many of the posts on this board with him, back in the old
days of Elmo, Lady Marmalade, Geb Bixer, Shawn, Dez, etc. (Russ, you were
around then too, weren't you?) in the Friday Night Shooters Club. Certainly
the pamphlet on Pegetron didn't provide any clue to the degree of physical
and mental side effects. Most of my "friends" stayed right the hell away
from me and I can't blame them because I did NOT want company and made it
clear.

You might find it helpful to google some of the old discussions on this
group. They were not nearly so kind, gentle and restrained, but certainly
you will be able to identify with much of the conversation. I guarantee
you'll get some good laughs out of it too. Hang in, hang on, your trip to
the dark side of the moon is a solo flight. But, you'll be back soon enough
and the light at the end of the tunnel isn't an oncoming train. I promise.
dBo - 28 Jun 2008 14:11 GMT
My experience, with work, fairly large tech company, where I have
worked for many years now, was fairly positive. Good benefits, when I
decided to do Tx I went to HR and explained the situation, that it was
apt to be a long grueling haul, and there was no way for me to
anticipate how I would react/handle it. They were able to put me on
"modified FMLA" which meant that I could continue to work, and if and
when, as needed, use FMLA time for absences etc.

I discussed the actual problem with my Manager - a co worked of many
years standing and a great lady, who said "What is Hepatits C I've
never heard of that, what does that mean....???" Jeez!

My "supervisor" was aware of my "status" tho we never discussed the
actual "problem" I suspected that he had a pretty good idea of what
the problem was, as the son of a doctor! He was a great young man,
very nice, always concerned, there to ask "how are you doing" etc
witout being intrusive.

Other co-workers if course were pretty much initally in the dark.
After I had lost the first 20 pounds, lots of women stared asking what
my "secret" was, if I had a special diet I was using haha! ever the
clown, I told them I was on the Ice Cream Sandwich Diet - no beer, no
wine and eat only ice cream sandwiches.....little did they know how
true it was! The ice cream sandwiches were my "fat" to take my Riba
with as well as one thing that would always go down...

By the time I was approaching the 10 month mark, it must have been
showing. There's a lot to be said for having been a single parent of
long standing with a finely honed auto - pilot and a strong ability to
just suck it up and say "so you feel like sh.t, so what things still
need to be done, nobody's gonna pick up the slack for you"...but the
days at work had gotten really rough, the Brain Fog was tremendous, I
spent way too much time staring at the computer monitor mopping my
face with my hands trying to figure out why I had flipped from one
application to another, haha! Then I came down with pneumonia,
followed by a MRSA infection and it was really "all over" for me and I
did spend two months on Short Term disability, I really could not
dredge up anything with which to carry on at that point, I had to
stay down for the count and put some energy into jsut surviving and
recovering...

On the other hand, I DID make the decision going in to put myself
first for once in my life, and determined for the "next year" my main
focus would be on getting thru tx and getting well, whatever it took.
Even while I dragged myself bravely to work, I came home at the end of
the day and collapsed into be to prepare myself for another day to
face.

I was very blessed in support - family and loved ones. While they were
all unbelieveably supportive, carried on the world around me, my
boyfreind as well, handled everything while I slept for months and
months. But then again he had been a single man all his life before me
and knew very well how to take care of himself. And his focus during
my tx was simlply
'"all that matters is getting you well". My youngest son, who is still
around, was there to run errands, make "herbal" purchases for me, with
complete understanding, as well as to offer half his liver as soon as
I let him know when I needed it, haha!

My brother found me a beautiful Dragon Slayer Sword on Ebay which he
bought me to hang on my wall where I could see it first thing when I
awoke every morning and last thing at night before I went to sleep...

All that being said, I have to agree that despite all the "support" it
was still a mystery to all of them. Boyfriend could not believe ANYONE
could sleep as much as I slept. Family would ask constantly "how are
you feeling" and all I could reply was that I "felt the same as I had
felt all along and the same way I was going to feel until I got thru
this thing." It was almost annoying to have them constantly asking me
how I felt when it seemed to me that al they had to do was LOOK at me
and must be OBVIOUS how I felt....you could see the pain and the
concern and the inability to really "get it" etched on all of their
faces. I got used to, but tired of,  the look of Puzzlement that was
always on everyone's faces.

Bottom line, Treatment, like everything else in this journey of life,
is best and often ONLY truly "understood" by those who have as you say
"have walked the walk"

And that, TX, I believe is why many of us are still here, despite
having gotten thru it, and for some, having actually managed to kick
the Dragon's a.s Out of the Building. We have walked the walk, and we
do understand, and at this point can only offer our expeience and
support to folks like you who are trying to make it thru.

YOU CAN DO THIS!

I offer you {{{HUGS}}} and the words of a very wise 9 year old who
once, at the lowest point of my life, gave me a hug and said "Don't
worry Mom, someday you will look back on this and it will all seem
like it was all just a bad dream........"

KICK a.s!
TX-012 - 28 Jun 2008 18:27 GMT
> My experience, with work, fairly large tech company, where I have
> worked for many years now, was fairly positive. Good benefits, when I
[quoted text clipped - 89 lines]
>
> KICK a.s!

Thank you--I really appreciate all the insight and detail...
Woofmix@gmail.com - 28 Jun 2008 22:47 GMT
All I can say is what everyone else has said.
I can't remember how many times I tell people I'm on the treatment
for 48 weeks and I'm X weeks into it and when you see them a week or 2
later they say "oh you must be finished treatment now", and I explain
it to them yet again only to receive the same comments next I see
them.

I work in Satellite Ccommunications and we have an equipment room with
high power amplifiers that have have noisy cooling fans that pump out
hot air, I was caught standing in front of them warming up a few times
as I sometimes feel cold due to Tx and that gave my workmates a laugh
although thay never seemed to grasp why I felt so cold.

Unfortunately my dogs have no concept of my plight and when I settle
into my comfy chair with a blanket on my knees and the TV on feeling
knackered and happy to just be doing nothing they decide it's time for
walkies and harrass me as only dogs wanting walkies can do, I once
told them "walkies later" but all they heard was "WALKIES" and were
even more insistent :-)  still I can't blame them and they give me a
good laugh most of the time.

Paul

> Just a question for those on treatment, or for those of you who have
> gone through the process--how well did those close to you, in your
[quoted text clipped - 5 lines]
> difficult to adequately communicate...or be understood, by those who
> have not actually...walked the walk...
greyhackles - 29 Jun 2008 02:03 GMT
>All I can say is what everyone else has said.
> I can't remember how many times I tell people I'm on the treatment
[quoted text clipped - 18 lines]
>
>Paul

lol. Cripes, my wife and I long before tx had resorted to spelling out the "W
Word" lest our doggies pull total nutties on us :-)

There's nothing quite so comforting when you're feeling like crap as curling
up on the bed with a pair of warm Labradors, though...

Cheers

/greyhackles
Waterspider - 29 Jun 2008 08:07 GMT
> There's nothing quite so comforting when you're feeling like crap as
> curling
> up on the bed with a pair of warm Labradors, though...

Except maybe a snuggling, purring cat :-)
 
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