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Author Topic: Nineteen Years Ago  (Read 4989 times)

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Offline DanielMark

  • Member
  • Posts: 1,475
Nineteen Years Ago
« on: September 08, 2007, 03:19:08 PM »
Nineteen years ago today, my family doctor called me into his office and said, ďWell this isn't the kind of news I like to give anybody, but  . . . Ē He then proceeded to tell me I was looking at a life expectancy of six months or so. That was September 8, 1988.

I had clues for a long time that I was likely infected with HIV. The previous December I spent a month in Rehab in New Hampshire to get a handle on my alcohol and drug abuse and it was during a routine checkup there that they discovered swollen lymph nodes and told me to get tested for HIV as soon as I returned to Canada. A positive test there would have meant being deported back to Canada and missing treatment. So although I was somewhat prepared, it still shook me up Ė especially that prognosis. This was of course still the 1980s.

I very stubbornly and stupidly declined protease inhibitors for years, until November of 2002 when I collapsed in line at a checkout of a grocery store. My viral load was more than 500,000 at that point, and HIV had finally hijacked me, as my doctor put it. Now when I hear or read other peopleís stories about the meds back then, Iím kind of glad I held out, regardless of the result.

Iíve been taking Kaletra (lopinavir and ritonavir) with Combivir since then, and things have improved over time. My viral load remains undetectable and my CD4 counts are currently above 900.

Everyone handles life and life changes in their own way. I would say that during the past nineteen years (and with age Ė Iíll be 48 in December) my values and life priorities have changed, and to me thatís as it should be anyhow, HIV positive or not. Iím also more aware of the value of time and what I do with mine Ė what is important to spend time on and what isnít Ė and this is directly linked to reaching a level of honesty in me too. No more do I say yes when I really mean no, or the other way around. I donít tolerate that which is not genuine any longer, including people.

That six-month prognosis has become nineteen years now. Sometimes Iím glad no one can predict the future, doctor or otherwise.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline MOONLIGHT1114

  • Member
  • Posts: 1,918
  • Cheech 2.2.94 - 4.23.10 We miss you so much!
Re: Nineteen Years Ago
« Reply #1 on: September 08, 2007, 06:18:05 PM »
I'm glad you're here.   :)
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Nineteen Years Ago
« Reply #2 on: September 09, 2007, 05:02:41 AM »
Thank you, Cindy.
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: Nineteen Years Ago
« Reply #3 on: September 09, 2007, 10:37:36 AM »
Hey Daniel,

I agree.  I am often glad nobody can truly tell the future. I am glad yours did not go as the doctor planned and that you are here today.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Nineteen Years Ago
« Reply #4 on: September 09, 2007, 06:22:58 PM »
Thank you, Mark.

Some days life is just baffling to me, but I guess as long as we are still breathing there's hope.

I see you are a hugger, so hereís a big one from me to you.

MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline komnaes

  • Member
  • Posts: 1,893
Re: Nineteen Years Ago
« Reply #5 on: September 10, 2007, 02:18:09 AM »
19 years! I look up to you Daniel.

Actually I kept thinking even before my test result that I would not have 19 more years of life; I didn't even know if I wanted another 2 decades of this. I would be close to 60 and very possibly unbearable and a destruction to anyone who care about me, if there'd be any left at that point. Honestly I didn't think I would live that long.

I still don't know if I want more life, and despite I do have my share of suicidal thoughts since the test result, I am not saying it because of my HIV status. I know what I need now is that one reason to hang on to that I was looking before when I felt constantly lost and did destructive things that lead to my HIV status, and now that it has come to this, the only option is to find it soon, and I have this feeling that I will achieve this.

I also want to keep the option that I can end it - I know it sounds bad - but I am beginning to admit to myself that there's a point to stop and when or will I reach that point I cannot know, but I think this sense of "control" is making me a stronger person now.

Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline Ithaca_Nights

  • Member
  • Posts: 47
Re: Nineteen Years Ago
« Reply #6 on: September 10, 2007, 04:06:28 AM »
Daniel,
I am glad you are still here as well.  Life does go on after HIV.
Hugs, Dan

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Nineteen Years Ago
« Reply #7 on: September 10, 2007, 05:09:30 AM »
Thank you both.

Life does indeed go on after diagnosis Dan, and to me the importance of living is not so much in what I accomplish, but how I handle the challenges that come my way. I have made plenty of mistakes and will make many more no doubt, but I have learned from those mistakes and try not to repeat them.

Try not to look up to me very far Shaun. Youíll only get a sore neck and be disappointed when I fall the next time. :-* I am not so concerned with how many more years Iíll live since I donít believe anyone can know that for sure. I am more concerned that when I die it will be with the fewest possible regrets.

And at this point Iím going to hijack my own thread and share with something a friend sent to me yesterday that made me smile.



If a dog was a teacher you would learn things like:

When loved ones come home, always run to greet them.

Never pass up the opportunity to go for a joyride.

Allow the experience of fresh air and the wind in your face to be pure Ecstasy.

Take naps.

Stretch before rising.

Run, romp, and play daily.

Thrive on attention and let people touch you.

Avoid biting when a simple growl will do.

On warm days, stop to lie on your back on the grass.

On hot days, drink lots of water and lie under a shady tree.

When you're happy, dance around and wag your entire body.

Delight in the simple joy of a long walk.

Eat with gusto and enthusiasm.

Stop when you have had enough.

Be loyal.

Never pretend to be something you're not.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline komnaes

  • Member
  • Posts: 1,893
Re: Nineteen Years Ago
« Reply #8 on: September 10, 2007, 05:26:43 AM »

Try not to look up to me very far Shaun. Youíll only get a sore neck and be disappointed when I fall the next time. :-* I am not so concerned with how many more years Iíll live since I donít believe anyone can know that for sure. I am more concerned that when I die it will be with the fewest possible regrets.


I know Daniel - what I mean is that it's fact that you HAVE lived that 19 years, that's what I need to look up to. I know too well we only have ourselves to look up to.

In the meantime, a big cyber HUG

Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline ubotts

  • Member
  • Posts: 347
Re: Nineteen Years Ago
« Reply #9 on: September 10, 2007, 10:48:20 AM »
Iam glad we are all still here..
I was told in 1986 about being hiv..Then it was a death sentence..
My lover of 10 yrs died from aids...........So i thought i was next.
I didn't take meds till 2002 when i was so weak i couldn't get up out of bed.

So then and only then did I start taken meds..
I saw what my lover went though in the 80"s from azt alone, and did not want that for myself..

I might of waited 16 yrs too long, but at least i waited till they came out with
some better medicines...........

My t cells were down to 27 and VL was sky high..
My tcells never went up very far..Maybe one, they were 301..that was a big
yahooooooooo for me..
I am still in the hundreds, have been for 5 yrs..........last tcell count was 294.
I don't know why my cells don't go up higher,,,
                        But
I do feel good, so I stopped worrying about numbers..
They fluctuate from time to time, and i still feel the same......thank god.
                       So..with that being said,
Guess we are all gonna be around for a long time........I don't see nothing
wrong with that, as long as no one is in pain...ride on my hiv friends..luv ya Ubotts
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline Zicon13

  • Member
  • Posts: 8
Re: Nineteen Years Ago
« Reply #10 on: September 10, 2007, 12:17:39 PM »
Well, where do I start.  ::)  OK, Happy 19th Birthday.  I will also be 19 this month.  Glad you are here, alive and still kicking. Take care Bro and wishes of many many years to come.
LIVE life to the fullest, then regret it! :)

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Nineteen Years Ago
« Reply #11 on: September 10, 2007, 02:51:40 PM »
It's ironic in a way Jean-Pierre since I always felt I'd be dead by 19 years old (never mind live for 19 years with this virus in me). Six months my foot! Instead of an old-timer club Iíd like to propose a long-timer club. Oh wait.  Weíre already members of that one.  :-*
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline bear60

  • Member
  • Posts: 4,104
Re: Nineteen Years Ago
« Reply #12 on: September 10, 2007, 02:55:46 PM »
Hi Daniel
Congratulations on overcoming the odds. It's always so easy to look back and say ..." that wasnt so hard"...but few look ahead and say..."Its a piece of cake".
One day at a time, Daniel, one day at a time.  Thats how we do it.
Poz Bear Type in Philadelphia

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Nineteen Years Ago
« Reply #13 on: September 10, 2007, 03:43:53 PM »
You got that right, Mr Bear! ;D
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline water duck

  • Member
  • Posts: 397
Re: Nineteen Years Ago
« Reply #14 on: September 10, 2007, 05:45:04 PM »
Dear Daniel,

Thank you so much for sharing your adventure with HIV; may we draw inspiration from your example !!

YES i can relate to how you have change values and life priorities and also not tolerate things that are not genuine including people : THANK YOU HIV !!

Wd

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Nineteen Years Ago
« Reply #15 on: September 11, 2007, 06:37:10 AM »
Thanks WD,

When the nay sayers and fake ones try to drag me down to where they are, I just step over their crap like so much dog poo on a sidewalk and keep going. LOL Oh, and itís just as easy to tell yourself you are living as it is to say youíre dying. If you canít laugh at it you canít live with it and letís face it, people can be outrageously funny sometimes.

And to hijack myself again, here's one of my favourite songs in the world.

Don't give up
It's just the weight of the world
When your heart's heavy
I...I will lift it for you

Don't give up
Because you want to be heard
If silence keeps you
I...I will break it for you

Everybody wants to be understood
Well I can hear you
Everybody wants to be loved
Don't give up
Because you are loved

Don't give up
It's just the hurt that you hide
When you're lost inside
I...I'll be there to find you

Don't give up
Because you want to burn bright
If darkness blinds you
I...I will shine to guide you

Everybody wants to be understood
Well I can hear you
Everybody wants to be loved
Don't give up
Because you are loved

You are loved

Don't give up
Everyone needs to be heard

You are loved

http://www.youtube.com/watch?v=ls7ila3srzI

You Are Loved (Don't Give Up)
Josh Groban
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline hudstar

  • Member
  • Posts: 130
  • 2010
Re: Nineteen Years Ago
« Reply #16 on: September 11, 2007, 10:44:23 AM »
Hey Daniel, the hardest part is to start counting the first year of the rest of your life. I know where you are at and haven't quite waved a flag for year one just yet so big hugs. For some of us we dropped most of the shallow things in life and got on with living in fastforward mode. Triple pill combo came and kept us around longer but we did not stop living life without that inner quest. My frustration is not HIV, it is that I continued to think clearly about my place in life (still in fast forward mode) while I viewed most of the world trapped by $$$$, ranking job titles or bad relationships.  I saw most lived life as a financial product that expired with age. Don't be dismayed, you are on the right track being complete as a thinking and conscientious person. In truth, most people didn't go through what you went through and I know it is hard to sit and listen to useless babble others see as important :) Don't lose contact with the world no matter how mundane/shallow it seems. I was more scared I would become biblical in my self righteousness! I didn't, I only evolved to see sh#t for sh*t. and knew a truly good thing when I saw it! I'll let you know when I get orientated myself
diagnosed 1988
POZ personals - hudster

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Nineteen Years Ago
« Reply #17 on: September 11, 2007, 03:24:41 PM »
Hudstar,

I still see the things of the world in a different light since diagnosis. Many things that the masses chase and glorify are empty pursuits to me. Basically I find those things a waste of time, and time is something I highly value these days. If I seem self-righteous because of that I donít mean to.

Where people are concerned, I know I am a lot more patient and try to be more understanding of other peopleís problems and struggles than I was pre diagnosis and pre honest self-examination. I say ďtryĒ because I can still be impatient when people whine about things instead of changing them. I have to keep reminding myself that a problem is a problem if it is a problem to someone else. There can be no degree of severity really.

Getting in touch with whatís important (for myself) is a lonely road in a sense, but only some of the time. Because when you meet up with like-minded people, it generally leads to some very rewarding friendships. The payoff is more than worth it.

Sorry if I'm rambling but I'm a little wired on coffee at the moment. Ď-)

Thanks for your feedback and big hugs to you too!

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline hudstar

  • Member
  • Posts: 130
  • 2010
Re: Nineteen Years Ago
« Reply #18 on: September 11, 2007, 09:54:10 PM »
Daniel, by no means I thought you self righteous. If it came across as that I'm really sorry - it was actually something I was concerned about for myself - just a bit of humour really. I connected a lot to what you said.  I fight my impatience every day and avoid what I see as useless. That combined with knowledge of what people can and still do in regards to HIV makes it hard for me to connect (with ease and trust) back into the general flow of things. Like yourself, I also feel I should be doing more to change people's minds. Warning - my ramblings to follow. In Australia we are well behind in activism. I see those in activism became complacent after they secured a stable job and started lining their superannuation funds under the new workplace laws. They stay comfortable and earn their keep by writing politically correct policies that never filter down to street level. You never hear about HIV here unless it is derogatory. Misogynism and homophobia is still active and HIV related abuse/murder still occurs within our South Pacific neighbourhood. It is hard to be complete in yourself and place yourself into a very incomplete environment.
diagnosed 1988
POZ personals - hudster

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Nineteen Years Ago
« Reply #19 on: September 12, 2007, 03:42:22 AM »
Um, actually Hudstar I don't feel I should be doing more to change anyone's mind. I am not an activist beyond educating people about HIV/AIDS on a personal level by sharing my own experiences. I shun the politics of most organisations in fact.

Case in point: I used to be involved in the AIDS Committee here in Ottawa and the ones in charge there were mostly control freaks who made many questionable decisions. But because they were the decision makers (who would go through the motions of asking for input then go ahead with what they wanted regardless) I left them behind. Last I heard the whole organisation was going down the tubes.

Everybody's different. C'est la vie.

Daniel

MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline hudstar

  • Member
  • Posts: 130
  • 2010
Re: Nineteen Years Ago
« Reply #20 on: September 12, 2007, 01:15:48 PM »
Um, actually Hudstar I don't feel I should be doing more to change anyone's mind.

And you never mentioned it. Must be my jet lag. My only input or views regarding HIV is solely expressed here, you are well ahead of me if you educate anyone by speaking about your personal experiences.
diagnosed 1988
POZ personals - hudster

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Nineteen Years Ago
« Reply #21 on: September 12, 2007, 01:26:54 PM »
Phew! I thought I was going senile again.  :D

I like the usefulness of the Internet but I do wish they'd hurry up and develop the
technology to overcome all of its pesky communication limitations!
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline hudstar

  • Member
  • Posts: 130
  • 2010
Re: Nineteen Years Ago
« Reply #22 on: September 12, 2007, 01:57:07 PM »
Nah, you're senile when you put your drivers licence into a automatic cash machine  ::)
diagnosed 1988
POZ personals - hudster

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Nineteen Years Ago
« Reply #23 on: September 13, 2007, 05:37:23 AM »
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

 


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