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Medical Forum / Diseases and Disorders / Hepatitis / October 2004

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Daniel - 27 Oct 2004 15:54 GMT
Well I have some good and bad news.
The good news is I don't have to take any more shots!
The bad news is that after 38 shots I found out yesterday
that the virus is not responding to tx.  The numbers are actually
going up instead of down.

Strangely I was almost releived to get the news.  I have been
sort of sitting back since yesterday watching myself in a detached
objective way.  Observing my reactions.  I immediately ran the
whole gamut of feelings.  Though I had tried to prepare myself for
this, I don't think you can until it actually happens. I even took a long
walk by myself by the river, even though it was so cliche.(read:
like an ABC family movie).

I have so many other issues going on.  The deafness, the AIDS,
the diabetes.  I needed for my own peace of mind to KNOW that
I had at least done what I could do.  When you walk a road like I am
walking there IS going to come a time when even though your doing all
you can you are still going downhill.  I have spent the better part of a
year fighting tooth and nail with beaurocracies, the Govt, State medical
insurance companies, Dr's, labs etc.  It had actually become my life.
I feel now that I would more than anything else just like to live this
last chapter of my life on MY terms.  I truly feel that I would rather
live 2 or 3 years happy doing what I want, when I want, than fight,
fight, fight to get another extra month or a year and be miserable.

Bottom line, even if the tx had worked and I cleared,  I'm still looking at
all the other things.  I'm not being morbid, I'm truly trying to be
practical.
I'm fortunate enough to have found that there is not going to be several
more chapters to my life, this is the last one.  Many people don't get that
opportunity. When you reach the point where it is all going to be downhill,
you can spend your remaining time fighting gravity, hopelessly trying to
garner more time, or you can just kick back, remove all the stress and just
enjoy the ride.

The hardest part for me yesterday was telling my partner.  We've been
together for 25 years.  He was always there for me throughout all
the boozing, the detox centers, jails, the hospitals.  I had tried to temper
him to the fact that the tx might not work.  But I had to watch as his face
fell, he looked so helpless, so all alone, I amost wept.  It was then that I
REALLY realized that this tx wasn't just about me.

I'm sorry to have to bring bad news to the group, I even debated just not
saying anything, but I think you all have the right to honesty and the
honest
truth is this tx doesn't allways work.  The honest truth is that we ALL are
going to have a last chapter.  But try to arrange it so when yours comes
your calling the shots (pun intended).  For me passing is going to be like a
graduation, I'll be going to a different level.  I am pleased with that, but
aware that my passing will be painful for others who may not share my
spiritual outlook.

So folks for me it's full steam ahead.  Were going to go places and do
things and write this last chapter our way.  I feel like I have a repreive!

I want to thank the group for being here. It really helped me.  And I know
you help others also. I'll be decloaking into lurk mode now,
but I'll be around.

Thanks again all.

Daniel
Thip - 27 Oct 2004 21:36 GMT
Daniel, the last time I had to give up tx and throw in the towel, I was
about ready to go ahead and shoot myself.  Then a co-worker said to me,
"Maybe it's time to focus on quality of life rather than quantity."  She is
SO right.  I'm taking each day as a gift.  When it's over, it's over, and
I'm ok with that, but meanwhile I'm smelling every rose I find.

Enjoy what you've got.  Stay with us here so we can be here for you if and
when you need us though, will you?

> Well I have some good and bad news.
> The good news is I don't have to take any more shots!
[quoted text clipped - 59 lines]
>
> Daniel
elmoemerson@webtv.net - 27 Oct 2004 22:01 GMT
sh.t, Daniel!  I'm not sure what to say.  Part of me is saying to 'stand
and fight', the other part of me agrees with you.  Wish I could climb
into your shoes to fully grap what you're going thru, but I can't.  All
I can do is let you know that I'm behind you emotionally and
spiritually.  Please don't go into lurk mode.  Have you consulted anyone
who specializes in both HIV and hepc?  The nurse practitioner that was
treating me does and I can hook you up with her if you're interested.  
Elmo  

http://community.webtv.net/elmoemerson/DocElmosHepFile

http://community.webtv.net/elmoemerson/TheFamilyAlbum
Daniel - 27 Oct 2004 22:57 GMT
Thanks Elmo,

Actually that's what my Doc does.  He's an HIV and
infectous disease specialist.  They told me 15 years ago I had
about 5 years at best.  So I can't complain.  I just want to concentrate
on what life I have instead of battling for more time, clinical trials,
hassles etc.  I truly feel better than I have for decades.  I just want
it to stop.  I'm tired, so tired.  You know what I mean.

Thanks
Daniel

> sh.t, Daniel!  I'm not sure what to say.  Part of me is saying to 'stand
> and fight', the other part of me agrees with you.  Wish I could climb
[quoted text clipped - 8 lines]
>
> http://community.webtv.net/elmoemerson/TheFamilyAlbum
elmoemerson@webtv.net - 28 Oct 2004 05:14 GMT
Give every day your best, Daniel.  You got my email and know how I feel.
I"ll be with you every inch of the way.  Keep your head up!
Elmo
///////////  
Thanks Elmo,
Actually that's what my Doc does. He's an HIV and infectous disease
specialist. They told me 15 years ago I had about 5 years at best. So I
can't complain. I just want to concentrate on what life I have instead
of battling for more time, clinical trials, hassles etc. I truly feel
better than I have for decades. I just want it to stop. I'm tired, so
tired. You know what I mean.
Thanks
Daniel
<elmoemerson@webtv.net> wrote in message
news:29063-41800CC1-217@storefull-3254.bay.webtv.net...
sh.t, Daniel! I'm not sure what to say. Part of me is saying to 'stand
and fight', the other part of me agrees with you. Wish I could climb
into your shoes to fully grap what you're going thru, but I can't. All I
can do is let you know that I'm behind you emotionally and spiritually.
Please don't go into lurk mode. Have you consulted anyone who
specializes in both HIV and hepc? The nurse practitioner that was
treating me does and I can hook you up with her if you're interested.
Elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
Red Dwarf - 28 Oct 2004 05:49 GMT
Daniel,
When I first read your post earlier today, I was stunned speechless, and did
not know to react. I only hope that when my time comes that I can deal it as
gracefully as you apparently are. May I come over and borrow a cup of
backbone. I'm truly impressed by your concept of quality of life, as opposed
to quantity.At the very least, you are lucky to have found somebody who
loves and cares for you, and have spent years together.You have a beautiful
attitude.
John
> Thanks Elmo,
>
[quoted text clipped - 20 lines]
> >
> > http://community.webtv.net/elmoemerson/TheFamilyAlbum
Don - 28 Oct 2004 01:32 GMT
>Well I have some good and bad news.
>The good news is I don't have to take any more shots!
[quoted text clipped - 9 lines]
>
>Daniel

Daniel, I don't know what to say except the best of luck to you.  And
keep optimistic about the future.  It makes life more enjoyable to
keep that ray of hope.  Gets you through those tough times so you can
get back on track to the good.
 
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