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Author Topic: thoughts on going quietly into the night...  (Read 6405 times)

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Offline Lis

  • Member
  • Posts: 593
thoughts on going quietly into the night...
« on: March 29, 2007, 06:46:06 PM »
I wanted your opinions on the concept of living your best life, and when its time to let nature take its course...  I feel myself at a crossroads...  I wonder if there are any people like me? 

poz 1986....

Offline Matty the Damned

  • Member
  • Posts: 12,228
  • Ninja Please
Re: thoughts on going quietly into the night...
« Reply #1 on: March 29, 2007, 06:51:00 PM »
Lisbeth,

Oh babe.

Matty the Damned knows that things have been unbearably grim for you for a while now. You have battled this ghastly disease for 21 years now and if your accrued wisdom tells you it's time to stop the meds then, to my mind, that's a totally valid decision.

You should know that Matty the Damned loves you muchly.

MtD

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: thoughts on going quietly into the night...
« Reply #2 on: March 29, 2007, 06:51:44 PM »
More than you might think my dear, more than you might think!

It is one of the bears that haunt many of us.  We all have to make those decisions on our own, and unfortunatly, that is just the way it is.  What is important is that all the people in that persons' life are supportive of that decision.  You absolutely know in your heart that you have my complete support, no matter what that decision is.  

Be strong, HIV is not for sissies!

Love,
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Ihavehope

  • Member
  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Re: thoughts on going quietly into the night...
« Reply #3 on: March 29, 2007, 06:52:45 PM »
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Lis

  • Member
  • Posts: 593
Re: thoughts on going quietly into the night...
« Reply #4 on: March 29, 2007, 07:03:28 PM »
I found myself this day unable to force a positive direction for all of this.. I see parts of myself fall off every day.. and i find myself useless for those that depend upon me...  shit... if i had a giant CD4... then I'd give it more of a try.. but so far, I'm still below 200.. puke for 45 min a day at least.. and whats really funny.... as i make the beds in the morning... I gag... (really not too attractive)  I gag when i make the breakfeast, i gag at the laundry... and i mean that.. any physical activity sets my gut off...  I have become accustom to that vile acid spit in my mouth... 

isn't that a precisios picture...

thank you all for the love...
poz 1986....

Offline Christine

  • Member
  • Posts: 1,069
Re: thoughts on going quietly into the night...
« Reply #5 on: March 29, 2007, 07:07:04 PM »
I have been there most of this past year. With each thing that happens, and each trip to the hospital, the thoughts become more intense.

My mind understands going gently into the good night, but my heart is not calm with the choice, so I go on.

This past trip to the hospital, I felt like my body was failing me, but my spirit still wanted to fight. At this point I fear my body will stop working, before I stop fighting.

But that is my thought for today. Tomorrow, I might think of going gently.

The conflict that I have tells me I am not ready yet. Sometimes I wish I would be ready. It would be so much easier.

So, yes, I understand all to well what you are thinking.

Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Christine

  • Member
  • Posts: 1,069
Re: thoughts on going quietly into the night...
« Reply #6 on: March 29, 2007, 07:14:33 PM »
I went through a period where I was throwing up all the time. I went everywhere with a vomit bucket. Disgusting visual, but it was that, or throw up everywhere.

Presently, I am in diarrhea mode. Projectile diarrhea. Anytime, anywhere.

I wish I knew when it was time for it to all stop.

Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline mjmel

  • Member
  • Posts: 2,069
Re: thoughts on going quietly into the night...
« Reply #7 on: March 29, 2007, 07:24:34 PM »
I read this post and kinda froze-up on how to respond. Just kinda stunned me for a spell. Maybe it's not for me to respond--but I have to.
You, of course, are likely directing this inquiry to those you know on this forum. You have a right to do what you want with your life. BUT....from one stranger to another, it is somewhat unsettlling to think someone is giving up. Then, I read your follow-up post and I understand the distress and level of suffering. I feel so helpless about what to say--as I've not been sick in my 17 years of HIV+.
I have seen some of your posts here.  You encourage people and reach out to scold, reprimand or otherwise offer wisdom.  So, I have deduced you aren't a quitter. Now, on the second post I read you have family that depends on you.
So I am compelled to say follow the convictions of your whole heart.
xxx,
Mike

Offline Optimistic

  • Member
  • Posts: 326
  • An Apple A Day Keeps The Doctors Away!
Re: thoughts on going quietly into the night...
« Reply #8 on: March 29, 2007, 07:28:45 PM »
HIV is a pain in the butt to handle sometimes.  I have not experienced what you are going through but in my opinion where ever there's a will, there's a way (I know it's easier said than done).  I hope whatever your decision may be, it will be the best choice for you.  Many of us have been to the crossroads; some have made good choices and others not so good.  Please weighout your decision very thoroughly because there may be no turning back.  Always make sure you will end up with no regrets.

Love,
Justin
« Last Edit: March 29, 2007, 07:33:12 PM by Optimistic »
12/06 (Atripla): cd4 - 260; cd% - 33%; vl - 169
1/07 (Atripla): cd4 - 267; cd% - 38.1%; vl - 132
4/07 (Atripla): cd4 - 373; cd% - 33.9%; vl - <50
7/07 (Atripla); cd4 - 287; cd% - 35.8%; vl - <50
9/07 (Atripla); cd4 - 356; cd% - 39.5%; vl - <50
12/07 (Atripla); cd4 - 517

Offline AlanBama

  • Member
  • Posts: 3,613
  • Alabama: the 'other' 3rd World Country!
Re: thoughts on going quietly into the night...
« Reply #9 on: March 29, 2007, 07:36:12 PM »
Lis honey, my heart goes out to you.   I know you are struggling, and have been for quite some time now.   I also know the reason you keep fighting is for your husband and mainly the kids....

I have always hoped and prayed that when the time came to "give up" I would know it, and be at peace with that decision.   I'd say it is something that no one can really advise you on, it's just something you know in your heart.

I will say that I respect whatever choice(s) you make, and will defend with every breath I have your right to make them.

I love you very much......

Alan  :'(
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Grinch

  • Member
  • Posts: 325
Re: thoughts on going quietly into the night...
« Reply #10 on: March 29, 2007, 07:47:22 PM »
Lis you've fought the good fight, no one can tell you it's OK to quit, nor can they tell you to keep fighting. During chemo I constantly asked for a dignified death.  I understand exactly what you're asking for.  That being said,  when ever I feel ready to quit some little thing reminds me I really should keep fighting.  A look from my wife that says I love you, or the laugh that escapes my lips as my dog wakes me up by dropping his ball on my face, or my friends sitting around the table so stuffed full of home made ravioli they can't even stand up.
Ask yourself, are there these little moments left in your life that offset the puking?  (BTW is it yellow acid goop?  I puke that up every morning.) Are there enough of these moments to offset the pain and the discomfort that you feel?
AIDS brings us a lot of pain but life can bring us a lot of joy.  Hang in there.  Make your choices for you and you alone.  Some times you have to be selfish.

Offline heartforyou

  • Member
  • Posts: 1,105
  • I must be a survivor in many ways...
Re: thoughts on going quietly into the night...
« Reply #11 on: March 29, 2007, 07:54:52 PM »
Lis,

Oh yes, more then you know. That is why I replied.
I wished I could take a ride to nowhere tonight and not return.....

Best of love

herman
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline Jnm594

  • Member
  • Posts: 111
  • Fight! Fight! Fight the Good Fight!
Re: thoughts on going quietly into the night...
« Reply #12 on: March 29, 2007, 07:59:33 PM »
I'm there myself. I just got my latest blood work back and I'm at 150cd4 from 155 three months ago. I'm tired all the time, am either throwing up or sitting on the john if I can make it in time.... :o :o..Collection agencies suing me for hospital bills that I can't pay, No help from my ASO, Everybody wanting their pound of flesh in more ways than one.....And Yes I too have thought many times lately if this is worth it..Is this a life worth living....

When I wake up in the middle of the night and run to the bathroom I think will I be alone the rest of my life, Will I get even sicker, Will I. Will I. Will I. And the answer is I don't know.

I've cried more than I ever thought I could lately trying to figure it out and I finally got sick of thinking about it but it's always there like a ghost following me around. I see someone that I'd like to say something to and get scared and go well I can't get close to anyone because I have the plague, the phone rings and I freeze because it's someone calling me for a bill that I can't pay, I get the mail and it's filled with nasty notices and when I go to get help they tell me to go on disability...Try and explain that you just need $5000.00 to pay medical bills and would even take out a loan and pay it back if you had any collateral left and they look at you like your crazy.

And if one more person goes "Oh Honey it'll all be okay" I might just wind up spending my last days in jail because I shot someone in the middle of town. This shit is hard........

You have what I have, this group of deranged, mildly psychotic, loving, crazy, bitchy, fighting, people that have the same thing I do that I can read all about their trials and tribulations and not feel alone. This is all I have, a computer screen where I watch other people's lives go by. I don't have anyone else. No kids, No Family close, No One. Nope. Just a bunch of pills and a body that's giving out

So yes I have thought many times like you do, remember you are not alone. If I could give you a big hug til you cried your eyes out I would because then you could give me one while I did the same.


Quote
I will say that I respect whatever choice(s) you make, and will defend with every breath I have your right to make them.
Ditto....

When it gets hard I always listen to my favorite song of all time..........

http://www.youtube.com/watch?v=qJEYu3KgWCE

Offline MSPspud

  • Member
  • Posts: 613
  • Joined Mar 2005 - Formerly UofMurbs
Re: thoughts on going quietly into the night...
« Reply #13 on: March 29, 2007, 08:46:21 PM »
Lis - I am just beginning to understand the struggles of life and the fact that it will only get tougher with this disease.  Knowing this, I respect your need to contemplate the will to move on.  I also know there are a lot of people who love you a great deal and need you beyond what the physical body provides.  You give more than you realize just by being here with us.  You're a beautiful and sensible person - when the times comes you will know.  Be brave and trust in that.   

Offline Jerry71

  • Member
  • Posts: 955
  • {Lexiva, Norvir, Complera} Still Breathing!!!
Re: thoughts on going quietly into the night...
« Reply #14 on: March 29, 2007, 08:47:03 PM »
Hey Lis don't give up girl. Keep the fight I know you can be strong. Just been two years for me and I have still not reached the 200 mark yet. Not sure if I really will either. But I'm not going to give up on trying my damnest to beat this dreaded disease. Just wish I could do this again with a true friend. Hugs to you my friend and you are in my prayers.  :-*


                                                                     

Offline Jody

  • Member
  • Posts: 1,823
Re: thoughts on going quietly into the night...
« Reply #15 on: March 29, 2007, 08:55:44 PM »
Heck no Lis is no quitter, and she wants so much to be there for her beloved family...And we love her too so we want her to keep going in the hopes that sooner than later things will be better for her and all of us...But we don't want to be selfish in asking people to do more than they can.  If it was just mind over matter she could lick this easily.

Keep on truckin' dear Lis.

Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline dtwpuck

  • Member
  • Posts: 1,013
  • дано мне тело, что мне делать с ним?
Re: thoughts on going quietly into the night...
« Reply #16 on: March 29, 2007, 09:16:04 PM »
I am going to quote my favorite poem....

A body is given to me, so unitary, so mine
What should it be that I am to do with it?

(translated)

I think that your life is fundamentally yours.  All ethical considerations aside... you and you alone decide if your life is complete and if it's time to draw the curtain.

I hope with all my heart that you feel that you have loved, and will leave the world a better place in which you found it.  Judging from the love expressed for you in this thread, I would say it is so.

Lis.. I don't know you.  I can only empathize.  I have held many hands as a hospice volunteer, and watched the beautiful transition of a life passing on.  There is no horror, no shame. 

Life is a beautiful thing.  I firmy believe that.  Your life should have the quality you need.

What does your heart tell you?   

With love and respect,
Scott
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 24,601
Re: thoughts on going quietly into the night...
« Reply #17 on: March 29, 2007, 09:35:47 PM »
Lis, if only hugs could do more.

To read what you have written and what others have said to makes clear that for anyone to call this a manageable disease is an obscene lie.

There's a lot of love showing for you here. If that has any power it ought to make something better for you today. I sure do you want you to stick around but I admit that might just be selfishness on my part.

For what they're worth sending you big hugs,
Andy Velez

Offline koi1

  • Member
  • Posts: 713
Re: thoughts on going quietly into the night...
« Reply #18 on: March 29, 2007, 10:17:18 PM »
Lis,

I felt like you in December, and I know that I could end up there again. This disease is beyond horrible. There is no way to candycoat it. I wish I could cure it. I wish noone would ever get this. I only hope something is coming down the road to make our lives better. Please hold on.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline dad1216

  • Member
  • Posts: 135
Re: thoughts on going quietly into the night...
« Reply #19 on: March 29, 2007, 11:04:09 PM »
Lis,

I made the decision in August to let nature take it's course.

Please PM me
23 years HIV+ (Oct 88)
11 years AIDS (March 00)

CD4=83  VL=47,000  (May 2011)
CD4=63  VL=78,470  (Oct 2010)
Prezista..Norvir..Truvada

Offline Life

  • Member
  • Posts: 2,388
  • Member 2005
Re: thoughts on going quietly into the night...
« Reply #20 on: March 30, 2007, 12:06:19 AM »
Lis.......

This is a time to listen to that voice deep within you........

I cannot bare the thought of such a decision having to be made, please make it with the support of your family.

Love,

Eric

Offline Central79

  • Member
  • Posts: 527
Re: thoughts on going quietly into the night...
« Reply #21 on: March 30, 2007, 04:17:33 AM »
Hey Lis

I read this thread, read some of your past posts and I don't really know what to say. You are going through so much, but you have so much you'd have to let go of in order to stop the meds. When I read about your family, or your husband I want to shout "keep fighting", but life at any price isn't life.

I hope you are able to come to a decision, and be at peace with it. I think the latest entry on Jonathan's blog says a lot for me - it was the subject of a seperate thread, and encapsulates the peace I want to feel when I finally die, from whatever cause.

At the end of the day, this is an incredibly personal decision. I have no experience that is helpful really. But I wanted to let you know I'm thinking of you, and wishing you the best.

M x.
Diagnosed January 2006
26/1/06 - 860 (22%), VL > 500,000
24/4/06 - 820 (24.6%), VL 158,000
13/7/06 - 840 (22%), VL 268,000
1/11/06 - 680 (21%), VL 93,100
29/1/07 - 1,020 (27.5%), VL 46,500
15/5/07 - 1,140 (22.8%), VL not done.
13/10/07 - 759 (23.2%), VL 170,000
6/11/07 - 630 (25%), VL 19,324
14/1/08 - 650 (21%), VL 16,192
15/4/08 - 590 (21%), VL 40, 832

Offline Bucko

  • Member
  • Posts: 1,947
  • You need a shine, missy!
    • The Spin Cycle
Re: thoughts on going quietly into the night...
« Reply #22 on: March 30, 2007, 04:35:44 AM »
Lis-

Whatever decision you make, at your own pace and in your own time, make sure that it is respected by all concerned.

Your life is yours to live til completion. When your time comes, make certain that no one can second-guess your judgement.

With all the love I have,
Brent
(Who only hopes as much for himself)
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline DanielMark

  • Member
  • Posts: 1,475
Re: thoughts on going quietly into the night...
« Reply #23 on: March 30, 2007, 06:26:25 AM »
I wanted your opinions on the concept of living your best life, and when its time to let nature take its course...

Hi Lis,

I find your questions intriguing, in the sense that I've also given good thought to how I'd like to go "into the night."

Having faith in a loving God and a belief in an afterlife is something that sustains me through times of sickness or fear of major sickness, and I've drawn up Powers of Attorney for Personal Care which I have to trust will be respected when my time comes. In other words, I hope to experience the most dignified death possible, but recognise that may be out of my hands if Im out of my senses.

Until then I plan to go on living the best of me living loving and stumbling on any given day, and not ask for more than that.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline RapidRod

  • Member
  • Posts: 15,286
Re: thoughts on going quietly into the night...
« Reply #24 on: March 30, 2007, 06:49:50 AM »
Lis, I'm not in a hurry to rush my demise. Even as sick as I have been, I'm not even close to being ready. Here I have A/C and were I'm going it's not air conditioned, so I prefer to stay here as long as I possibly can. I hope you make the decision to stay around too. I would hate to die and a month later find out they found a cure. That would be my luck too. Think about it real hard Lis.

Rodney

Offline woodshere

  • Member
  • Posts: 1,477
  • ain't no shame in my game
Re: thoughts on going quietly into the night...
« Reply #25 on: March 30, 2007, 09:08:23 AM »
We are all familiar with living wills and what they can do for us if we are unable to decide.  However many people find themselves in a situation similar to yours Lis, fully capable of making decisions, but a quality of life that is declining.  I am reminded of the movie It's My Party, where Adian Quinn made a decision to end his life rather than suffer through the devasting disease.  I cannot imagine what it must be like, but I hope that if my life leads me to the point similar to  yours I will have the courage to actually face and make a decision, of which either outcome is difficult.  I think this says it all

I am going to quote my favorite poem....

A body is given to me, so unitary, so mine
What should it be that I am to do with it?

(translated)

I think that your life is fundamentally yours.  All ethical considerations aside... you and you alone decide if your life is complete and if it's time to draw the curtain.

I hope with all my heart that you feel that you have loved, and will leave the world a better place in which you found it.  Judging from the love expressed for you in this thread, I would say it is so.

Lis.. I don't know you.  I can only empathize.  I have held many hands as a hospice volunteer, and watched the beautiful transition of a life passing on.  There is no horror, no shame. 

Life is a beautiful thing.  I firmy believe that.  Your life should have the quality you need.

What does your heart tell you?  

With love and respect,
Scott

Be strong,
Woods
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,619
  • 31 Years Poz
Re: thoughts on going quietly into the night...
« Reply #26 on: March 30, 2007, 11:24:37 AM »
Dearest Liz,

Of course there are other people like you, who sometimes have to face some of the most intense human experiences.  I've often pondered my demise but I do not fear death, just the loss of a bearable quality of life.  That is the core question for me in maintaining my existence and I suspect that if my health were to decline dramatically (again), I might be faced with very different decisions.

Liz, the bottom line is you must ultimately follow your heart.  You have an intense commitment to your family and given your medical history, one would think you would become bitter, yet you still display a wonderful temperament, albeit tempered by your physical reality and I urge you to let that become your guide.

You know I am always here for you and I will support you in living your life as you see fit.

Yes there are other people like you, millions in fact, but right now you are the only one that matters.

All my love.

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: thoughts on going quietly into the night...
« Reply #27 on: March 30, 2007, 11:58:25 AM »


  Sorry things are so bad Lis.  I just wanted you to know you are in J and my thoughts.
I despise the song Love is in the Air, you should too.

Offline Teresa

  • Member
  • Posts: 1,753
Re: thoughts on going quietly into the night...
« Reply #28 on: March 30, 2007, 01:42:31 PM »
Lis,

I have such a hard time putting my feelings into words. I just want you to know that you are in my thoughts and prayers.

Big Hugs
Teresa
Hubby HIV+ 5/5/06
CD4:320
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)
 

Offline gemini20

  • Member
  • Posts: 262
Re: thoughts on going quietly into the night...
« Reply #29 on: March 30, 2007, 03:35:03 PM »
Lis,

I really feel for you at this time - this is a place I have thought about often in recent weeks and wonder what path I will follow.

Currently I am staying off the meds and so to some extent I am letting nature take its course with the knowledge that this may hasten the onset of ill health and whatever might follow. But the pace at which that might happen cannot be known so rather than focus on what might happen I focus on the here and now because that is all I have.

I am fortunate in many ways because I am not suffering any ill health at the moment and perhaps my judgement would be somewhat different if I had to deal with the stuff you are going through.

All I might suggest is that you listen to your gut instinct on this one, somewhere within you are the signposts you need to follow to come to a decision that is right for you.

My thoughts and best wishes from London.

Hugs,

Emma

Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline bimazek

  • Member
  • Posts: 781
Re: thoughts on going quietly into the night...
« Reply #30 on: March 30, 2007, 03:52:08 PM »

these were very difficult posts to read for me a newly diag. person not even on meds yet, i have lost so many friends, lovers, boyfriends, and mentors over last 25 years, i have no idea what to say but this

seems to me they are very close to having lots of powerful new meds and gene therapy and treatments

are you on HGH that has been shown to restore the nodes and lymph system somewhat and the rich in LA poz for 25 years are on that and androgel and at least staying stable

can your dr. rx HGH and such

are you in city
can you get in a gene therapy trial or vaccine trial?

what is causing these issues.. the side effects of the meds, or the reduced state of body from the hiv?

i read that when we orgasm for a second that we feel connected with universe
that death is just infinately a orgasm because we are connected with universe
become one with the universe

i am not good with emotional things

i support you in what ever your decision


Offline Dragonette

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Re: thoughts on going quietly into the night...
« Reply #31 on: March 30, 2007, 05:37:17 PM »
NOT AN OPTION

And yes I thought about it many times... I even tried it.
When I was diagnosed, CD4 77, 3 days before moving in with a guy that I loved, and he threw out my clothes, and I had to sleep on the floor, and it was bitter cold, and I had no health insurance, and I felt like something scraped off someone's shoe, I gave myself 1 year to live, but at the time, even a week was unbearably long, and it got better, so much better it is like science fiction sometimes.

I believe there are other reasons for living we just need to find them. It might not be for love, sex, travel, success, beauty - all the things that made my life worthy until now. It might be for articulating a thought or looking at a plant or keeping a pet or helping someone else....

Look at Steven Hawking

Look at this guy:
http://en.wikipedia.org/wiki/Jean-Dominique_Bauby

"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Dragonette

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This is actually a better link....
« Reply #32 on: March 30, 2007, 05:39:22 PM »
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Oceanbeach

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Re: thoughts on going quietly into the night...
« Reply #33 on: March 30, 2007, 07:33:56 PM »
My Dear Lisbeth,

Even though we have never had the opportunity to meet in person, I have read many of your postings over the past couple of years and believe I understand the battle you have been fighting for all these years.  AMG 05 and 06 was so far away and so costly, I could not even consider going.  There is a long list of people I hope to meet at AMG 07 and you are in the top 10!

Meanwhile back to your topic and going quietly into the night...  I found myself so alone in the world when I left my friends in L.A. for a free house in the country.  It was 13 hours away from my life on I-5, the years I spent there and the years I have spent in Sonoma County have all been empty and void of friends and family.  Yet every couple of years, I would go to Los Angeles, run into many friends and it seemed like we had all been together recently as opposed to the years.

That free house had belonged to my family and every adult resident of that property had passed away in that house.  I was the first adult to ever move out of that house and not in a pine box.  That house was haunted but all of the ghosts were members of my family.  My mom was in the living room, cousin Jim in the kitchen, an aunt was in the dining room and another aunt and an uncle were in the yard.  The only visitors I had over a 4 year period were paid employees in the healthcare network and two nurses from the local ASO.  I knew that with one nurse coming per month, that if I were to die in that house, it would be months before anyone noticed.

I made the decision that when the dog died, I would stop taking my meds and let the disease take it's course.  Then one day, I moved and found myself becoming active both socially and professionally.  It is through and with the support of you and so many other forum members and my volunteer work with the Sonoma County Commission on AIDS, that I have found that I can make a difference and this motivates me more than any other reason.

Your daughter has posted a few times over the past couple of years.  One can tell by her writings that she has love and dreams of a future.  I hope you continue to fight the fight and continue to take your meds because you need to dance at her wedding.  Have the best day
Michael   

Offline Moffie65

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Re: thoughts on going quietly into the night...
« Reply #34 on: March 30, 2007, 07:37:22 PM »
NOT AN OPTION

Look at Steven Hawking

Dragonette,

Please make sure to look at the photo above of that wonderful woman who is Lis!  Look at that face, that smile and oh those eyes.  This is not the face of a woman that gives up easily.  She was told to give her new born son away back when she was diagnosed, and she told the case manager to go to HELL and take her shit with her.  She watched him grow, he is now out of high school and starting his new life as an adult. 

For anyone here, it is imperative that we do not accept that choosing not to treat any more is absolutely an option, and should not be scorned because someone chooses that route.  This is a very expensive disease if you don't have the luck to live in a country that supports you with medications.  Some of the members here don't have the choice of taking medications, for there are none available where they live, nor could they afford them if they wanted to.  Please remember, after 20 years of fighting this disease, one must at some time question the inevitable.

Dragonette, I am not trying to pick on you here, only provide guidance as to how to handle subjects like this.  As an AIDS worker and an advocate of 25 years; it has been my observation that to choose NOT to treat is just as valid a choice as to go ahead and treat.  Each one of us must make that decision, and each one of us need to support those decisions.

I know Stephen Hawking, and he is not in any pain comparred to what Lis and a few others here are living with on a daily basis.  His inability is with movement, not 24/7 pain and vomiting.

Please take this as a loving commentary and try to remember it in the future.

Love,
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline way.out.west

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Re: thoughts on going quietly into the night...
« Reply #35 on: March 30, 2007, 07:38:00 PM »
Lis, Im so sorry that youre having such a hard time.  I hope that you find peace in whatever decision you make.

Offline Dragonette

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Re: thoughts on going quietly into the night...
« Reply #36 on: March 31, 2007, 04:13:22 AM »
Dear Moffie

I meant not an option for me... I thought Lis asked if readers thought about it. I did (and I tried) and now it is not an option. Maybe because I tried it a few times and I realized that I like living no matter what (that was pre-HIV).

As you know I live in Holland right now were euthenasia is an option and I have heard of people getting their family doctor to do it (not necessarily with HIV; for example a friend of a friend, mother of small kids, was euthenizeed for cancer), at the same time my social worker at the hospital told me that they had AIDS patients choose to die by quitting meds and they did not stop them. They do that here.

But for me it is not an option. I don't know what will happen when I am severely ill (cancer & Alzheimer's scare the crap out of me). I don't judge I just know that things are very fluid when it comes for HIV/AIDS, there are so many stories of people being told they will die or have a year or so to live who are around and walking. Not just with HIV... My friend's aunt, in her 50's, had her lungs collapse and she was told that she would have to spend the rest of her life lying down connected to machines (this is in the UK). Well now she is driving a  car few months later and independent, and she only uses a machine a few times a day. But I can imagine, that when she heard that she has to spend the rest of her life in the former situation, she wanted to throw in the towel.

I think neausea and illness are extremely unimaginably depressing, when I barf I want to die and it doesn't happen so often, so what it if happened every day? It's so hard to seperate mind from body, to hear your spirit and let it fight (or give in) but the main point is IS LIFE STILL WORTH LIVING? I only "butt in" because I don't want someone to make the irreversable choice unless there is no other choice

Hugs
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Dragonette

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Re: thoughts on going quietly into the night...
« Reply #37 on: March 31, 2007, 04:19:19 AM »
one more thing... I didn't mean to scorn or sound as if I did. Who the F am I to scorn?
It is empathy not scorn and it IS an option even in countries where it is not strictly legal (for example when my grandma had cancer my family gave her the "control" over the morphine). It is always an option. But life is also an option.

Love you too
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline scud44

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Re: thoughts on going quietly into the night...
« Reply #38 on: March 31, 2007, 07:32:25 AM »
To Lis and any one else out there in a similar situation...

I have been poz for about 5 years and habe a 308 CD4 count and a low VL. I also have been afflicted with various other health problems over the past year which unfortunately has caused me to be off work since last August.
It turned out that I have benign brain tumor which was being a nuisance and causing me to have falls and not be able to remember small things. I am also unable to drive for any great distance and have been advised not to drive in traffic, which doesn't give me many driving opportunities.
The Tablets that I am on at the moment are causing daily grief - 4 x Indinavir, 4 x Retonavir, 4 x Abavavir and 1 x Lamivudine (3TC) plus assorted other painkillers and 25mg of Cortozone.
Vomiting and diarrhoea are regular daily companions along with bad body aches and pains and other things to help make life miserable.
On the "plus" side, I have a very supportive partner, a damn good doctor and a good network of friends.
On weighing all this up, I still often wonder if it is all worth the trouble - how much more misry do I need to take physically? Mentally I still read and play on the computer.
Finacially the burden is hard and I often think that I would be better away fromthis situation (wouldn't we all!) and that I don't want to spend my last years, months or days living this way and causing further grief to my friends. I think I would rather pay for them to have a good "Wake" after my funeral than keep on with expensive medication that just prolongs the the arrival at the inevitable destination.

Regards

Scud44
CD4 = 110 - 30 July 2007 - 10%
VL = 139000 - 30 July 2007
CD4 = 252 - 6th August 2007
VL = 16400 - 23rd August 2007
CD4 = 240 - 23rd August 2007
VL = 400 4th Sept 2007
CD4 = 96 - 4th Sept 2007
CD4 = 120 18th Sept 2007
VL = 386000 19th Nov 2007
CD4 = 160 19th Nov 2007
CD4 = 110 10th Jan 2008
CD4 = 311 29th Jan 2008
VL = <50 29th Jan 2008
CD4 = 148 2nd April 2008
VL = 110,000 2nd April 2008
June 2010 and nothing has improved

Offline mjmel

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Re: thoughts on going quietly into the night...
« Reply #39 on: March 31, 2007, 08:33:24 AM »
Lis,
Have the replies to your posting been helpful?
xxx,
Mike

Offline Christine

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Re: thoughts on going quietly into the night...
« Reply #40 on: March 31, 2007, 10:04:05 AM »
I have been thinking about Lis's question all night, and the responses.

Many of the posts have been about choices, don't stop fighting. But, there will come a time when there is no choice. Your body just stops working, medications stop working. Your spirit and soul become so tired, so unimaginably tired.

For me, and I think for some other people on the forums, the conflict and the questioning happens at this point. There is illness either way.

It becomes a question of how long do I want to live with suffering.

And there is no weakness of spirit at that moment. There are few questions in the world which require more bravery and courage.

Lis you are a brave and courage woman. You are not alone.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Moffie65

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Re: thoughts on going quietly into the night...
« Reply #41 on: March 31, 2007, 07:39:53 PM »
Dragonette,

Thanks so very much for coming back and clarifying your first post.  It sounded very judgemental to me, but I can see what you meant now.  This is the very reason why most of my posts have more words than are necessary, simply because English is so difficult to use sparingly, as it can be so easily distorted. 

Thanks again,

Love,
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Lisa

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Re: thoughts on going quietly into the night...
« Reply #42 on: March 31, 2007, 08:16:48 PM »
Hey Sis,
You know I feel you on this one. If my daily life becomes a hideous nightmare without end, I will take whatever measures are at my disposal to end my own suffering.
However, until that day comes, they will have to pry my meds out of my cold dead hands!
We all have the right to a dignified death. It seems the problem lays with the people who are unwilling to let us go.
I have instructed my kids to let me go, and I have already made my own prepaid cremation plans. They can either take me to the ocean, or sprinkle me in the tomato patch(cause I hear bone meal is a great soil nutritive).
And, since we're on the subject, I have also made provisions for them to sign in here to let you all know that I'm gone.
      ......but that is a long way off, and you and I still have another meeting or two to accomplish before anybody starts talkin about havin' to go.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline tigger2376

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Re: thoughts on going quietly into the night...
« Reply #43 on: March 31, 2007, 08:53:52 PM »
Lis, you seem, (and look like), a beautiful person.
i'm sorry you've been through so much shit.
for me, it would feel like letting 'the bitch', my 'pet virus' win, but I'm sure as hell not going to let it make me suffer an undignified painful death either. Have made a living will myself, but hope to god i'm compus mentis enough to make sure the docs etc stick to it!
all I can say is, This post made me cry, even though I don't know you
Don't want to lose any more people to this
You are in my thoughts
Jo
x
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline Nico

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Re: thoughts on going quietly into the night...
« Reply #44 on: April 01, 2007, 08:32:28 PM »
Lis,
You and only you know where you are how your life feels.  Your will is a driver and this forum is your navigation. 

That being said, I reflect on Jonathan's blog a few months earlier.  Please read it if you have not already.  The purpose is to highlight where he was then and where he is now. "Thank you Jonathan".

I wondered, if I was at the road to choose some years ago, what would I do or want.  I just kept on listening to my body, mind and soul.  I cannot give you an answer, but to say you are not near the finish line.  The race is tough, you hurt and you are tired, but there is a crowd cheering you on and clapping.

Whatever happens, you do your best. 

Keep on and hang on.
Rog 
Poz since 1990.

 


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