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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Encouragement from a long term survivor
      #188598 - 04/29/06 10:12 AM

As many of you know, I was diagnosed in September 1985 in Atlanta by the Red Cross after I gave blood at a company sponsored blood drive. I was lucky I found out early in my infection. I have always had the best of care since my diagnosis and maybe that is mainly why I have survived so long; but I believe there are so many other reasons for my survival, beyond medicine.

The meds are greatly improved since those early days when we had to take the only med available, AZT, around the clock every four hours. These days I take just a handful of pills every night before I go to bed. Soon, a combo therapy will be available that will require just one pill once a day, truly a miraculous thing.

My CD4 count is the same as it was eleven years ago, around 400, and my viral load is undetectable. If I hadn't had PCP a few years ago, I wouldn't even be classified as having AIDS; I would merely be HIV positive.

My doctor is so pleased with my results that he is considering taking me off Dapsone and maybe in a few months Norvir. My swollen liver lept for joy at the news, which since I am always aware of it was no surprise.

I have had some side effects over the years from the meds. Some were short term and corrected themselves, some were so painful or debilitating that I demanded their removal from my regimen. The doctors have always been able to find another drug that worked without side effects.

I have tried numerous nutritional therapies. For many years, I was an organic vegan, but my blood work responded negatively to that regimen, and so I quit. I was for many years treated by Dr. Jon Kaiser in his San Francisco practice and I followed his diet, exercise, and herbal treatments. I felt much better and my CD4 rose to nearly 900, only to drop back after a few years.

I tried testosterone therapies using first a cream rubbed on my thighs and then a patch. When my PSA tests started trending upwards and my prostate enlarged, I stopped it. However, while on testosterone, I did feel much better.

I had my stool tested every month for parasites and immediatley treated myself for infestation with Flagyl and walnut bark. The Flagyl made me feel like I was full of ants and the bark gave me painful BMs, so I stopped that.

One therapy that did and still does work, was the years I spent working with psychiatrist Gerald Jampolsky in Tiburon, California. He and his people taught me the value of healing my attitude toward my condition and with the Universe. I am eternally grateful to him and I will always honor the debt I have to him to spread the miracle of his program, Attitudinal Healing.

I was a faithfully practicing Christian for over a decade, until I read Joseph Campbell's Hero with a Thousand Faces. That book showed me that an Eternal Truth lies behind the ritual and dogma of the world's faiths. Since reading that book, I have sought an understanding of the Eternal Truth. Sometimes, I feel in my heart that I know the contours of it; but, I am like the blind man who seeks to know the elephant. I may know what I can feel, but I cannot compehend the totality.

I hate old men who deign to counsel from the benefits of their experience, perhaps because I refuse to believe I am not still a vigourous twenty year old with a seeming eternity of life before me. Nevetheless, I offer these simple guidelines for long term survival with HIV --

@ Have your blood and liver tested every three months
@ Work with your doctor as a partner not a patient
@ Take your medications regularly
@ Following a life of moderation with nothing in excess, but do not deny yourself the pleasures of this world
@ Work diligently toward union with the Eternal, however you define it
@ Learn to walk in other's shoes, before you judge them
@ Find work that answers your needs in life. No blessing is so great as rewarding work, and no curse so onerous as soul draining work
@ Learn something new every day

And that poppets is how I have survived this long.

Lux eternum,

--------------------
Life is a river.
Carpe diem.

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Jenni
Master

Reged: 11/06/05
Posts: 149
Loc: Texas, USA
Re: Encouragement from a long term survivor new
      #188600 - 04/29/06 10:24 AM

Your posts are always so encouraging... Thank you for sharing with us. I really admire you for your strength and honesty.

--------------------
It's you that I live for and for you that I die.
So I'll lay here with you until the final goodbye

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Encouragement from a long term survivor new
      #188603 - 04/29/06 10:34 AM

Chuck, "that" is why I love you!

Signed - mini Poppett

Edited by EricCO (04/29/06 10:35 AM)

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Stresser
Expert

Reged: 03/29/06
Posts: 117
Re: Encouragement from a long term survivor new
      #188608 - 04/29/06 10:51 AM

U know ScottCharles, I have been coming to this website since october of last year worried sick that I might have been infected from a 1 time (PROTECTED VAGINAL GOD AM I STUPID) at a bachelor party. I have tested negative at 5 and 7 months via EIA. What I really want to say is that, here I am worried sick of having been infected from a sex worker, and all of U guys here are living with this, keeping your chin up, living life like all of us should. All of U guys, EricCo, Bear, AIDS2HIV, BLIXER (U will make it my friend) are an inspiration. I mean U guys HAVE this disease and so many 1000's of people (myself included) test negative past the window period and continue to torment them(our)selves and keep testing over and over and over and over. Somehow we think we are smarter than doctors. I guess the guilt trip and maybe some other sickness that are normal to the human body make us think we have hiv. Life has it's ironies and at the end of the day it's how U live your life and how U come to terms with yourself regardless of what cards U were dealt. All the best to all of U....

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Blixer
Legend

Reged: 01/10/06
Posts: 599
Loc: Missouri
Re: Encouragement from a long term survivor new
      #188610 - 04/29/06 10:55 AM

Stresser, I think you say it all so well. Now I hope that you have been able to move beyond your worry and get on with your life in the greatest way possible too!!!

--------------------
David
Sustiva, Epivir, Videx EC


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Blixer
Legend

Reged: 01/10/06
Posts: 599
Loc: Missouri
Re: Encouragement from a long term survivor new
      #188612 - 04/29/06 10:57 AM

ScotCharles, I have to admit that sometimes in the past I thought you were a bit on the negative side. This post today was great. It was really encouraging to me at a time when I need it. Thanks so much and I loved all of your bulleted guidelines at the end. It has taken me many years and much heartache to learn some of those things. You summarize it so well. Thanks...

BTW, I obviously feel some better because I'm back here reading and responding to posts... something I haven't done in over a week....

--------------------
David
Sustiva, Epivir, Videx EC


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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Negative? new
      #188625 - 04/29/06 12:01 PM

Crochety maybe, opinionated maybe, bitter maybe, angry maybe, cruelly honest maybe, indignant maybe, but I always greet the dawn as a new day full of promise. You have to remember I was trained by British professors, who were always cruelly honest in tutorials. I guess I picked up the habit from them; but behind my crustiness is a compassionate heart and eyes that easily mist up. I welcome brutal honesty. Isn't that the point in every movie where the truth is revealed?

I have never cared a fig what people thought of me, but I do have a big heart and a compassionate nature. Thank you for your post, David.

Lux eternum,

--------------------
Life is a river.
Carpe diem.

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Blixer
Legend

Reged: 01/10/06
Posts: 599
Loc: Missouri
Re: Negative? new
      #188627 - 04/29/06 12:09 PM

Charles, I replied to your private message. I have gained a much better understanding of you and of myself in this instance. I now see things in a different light. And that is a good thing. Thanks!

--------------------
David
Sustiva, Epivir, Videx EC


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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Negative? new
      #188630 - 04/29/06 12:36 PM

Thanks, David. The play Angels in America teaches us that god is sorry he cannot help us even though his compassionate heart desperately wants to help. AIDS is a metaphor for all that is wrong, great and good in this world. We who have HIV/AIDS have much to teach the world. Now Comes Millenium!

At the end of the play, the hero has a monologue in which he dismisses the endless disputes of his friends and directs the audience's attention to the trees in Central Park that turn gold and red in the Autumn. As he says, to paraphrase, the Bethesda Spring is flowing with healing water, we need only to find our way to it.

Cheers mates and fellow travelers,


--------------------
Life is a river.
Carpe diem.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Negative?
      #188632 - 04/29/06 12:46 PM

Chuck, I bought AIA but am afriad to watch it due to the nature of the AIDS topics. Am I missing out and should play it or wait a few years until I have grasp of myself first?

Signed Crochity...

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Negative?
      #188634 - 04/29/06 01:03 PM

Put in on, put your arms around William, have a big box of Kleenex nearby and watch it. Originally, the play was presented in two parts, for a purpose. The first part plunges the audience into the depths of dispair and anticipation. The second part, resolves into acceptance and hope. I would take a break of a few days between the two parts, so you can digest the messages.

The meds are discussed, the only drug available when the play was written was AZT, but the discussion is still pertinent.

Tell us what you learn once you watch it, I for one would be very interested in your thoughts.

Now Comes Millenium!

--------------------
Life is a river.
Carpe diem.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Negative?
      #188635 - 04/29/06 01:09 PM

Ok Chuck, Ive got Thur, Fri, Sat nights off this week... Just please dont send me over any edges!!! I will report back to you on my completion of the moooooovie...

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Negative?
      #188638 - 04/29/06 01:17 PM

When man encounters The Abyss, he must learn to look into it no matter how painful and wrestle with the Angels and Demons that lie therein. The reward of The Encounter is peace. The Encounter resounds through all the Holy Books of the world.

And if you need help, well, there is always medication to round off the edges.

Have a good trip.

--------------------
Life is a river.
Carpe diem.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Negative?
      #188640 - 04/29/06 01:31 PM

Chuck what really got me when I watched the first 5 minutes of AIA (then stopped) is us flying over America and winding up at the Bethesda Fountain and the "eyes opened". The last time I was there I splashed around in that same fountain (without HIV) as well as remembering the film GODSPELL when Jesus was baptized in that same fountain along with everyone else back when there was no HIV to speak of... That was in and of itself very strange for me.... I want to become more a tuned to myself and my world I live in. Me and William will get our box of cleanex out and find the meaning..

Love

Eric

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Negative? new
      #188648 - 04/29/06 01:48 PM

The eyes open because god knows we need healing in this time and he desperately wants to give it to us and take away our pain, but he cannot, so he sends an Angel who... well that's the point of the play, isn't it?

Lot of Old Testament allusions in the play, which is why you need time to ponder the symbols. But the play is no anthem to the OT God, far from it. Healing is not a release from physical pain, but ever so much more as you will learn.

I would recommend heavy duty Kleenex, then after the first part, maybe a Xanax and some monkey sex with William.

Cheers,

--------------------
Life is a river.
Carpe diem.

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