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Author Topic: could reply to a lot here.. but here's from an old hand..  (Read 2539 times)

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Offline Just_Need_A_Pain_Killer

  • Member
  • Posts: 8
could reply to a lot here.. but here's from an old hand..
« on: March 25, 2007, 10:29:52 AM »
Greetings everyone..

Maybe this is sychronicity at it's finest  - stumbling on this forum while looking for insurance with people with HIV/AIDS.. On SSD and have ADAP+ right now but taking aggressive steps to go "back to work" again.. My former "trade" (long haul trucking) is pretty physically demanding and not the MOST friendly to HIV+ but I'm pretty straight with my status, sometimes to my detriment. Kind of in a quandary right now..   

I want to try and stay "on topic" for the newly diagnosed..

I do want to say thanks to POZ for the forum.. I gave up on these things YEARS ago.. love the mag when I read it.. My wife is an old friend/acquaintance of River Phoenix (not the actor) who wrote a poem that I believe appeared in POZ (don't remember where I read it).  It was hard hitter and it just broke me right down.. for some reason, its still powerful when I read it.. This hits the nail on the head - when it finally dawns on you - just what you're dealing with..


Afraid of living
afraid of dying
walking empty-handed
         into the void.

No man
no money
no job
Just me and this imaginary
         disease.

Can't say what it looks like
speck of dust
flash of light
Mack truck
 

My "story" is very long and an an old catastrophic crush to my right hand makes it pretty painful to type for long periods. Ive been positive a long time guys and girls. I was no angel in the 80s.. had my share of sex drugs, and rock and roll, but I'm 99.99% sure this got me in a blood transfusion after I lost a fight with a hydraulic sheet metal break on Oct. 19 1983 (if you watch the movie "The Band Played On" you would know the irony of that date) @ 3:30 p.m. - 31 hours of surgery - 5 weeks in the hospital.. a bunch of blood and drugs that I reacted violently to. I couldn't have known about sero-conversion as I was fighting a staph infection - the last thing on my mind was HIV - the crippling injury was hard enough. That whole story could take up paragraphs but its the "recipe" or the "package" we're talking about here..

I had a REALLY long rambling post filled with drama working but the point is:

It took me a long time to come to grips with this, but I was angry and determined from the beginning. I could have been diagnosed with AIDS in 89 when I first became symptomatic. I refused the Western blot, but HIV test was positive, so I got away with ARC. My "official" diagnoses dates to Jun 97 when my t-cell was 16 (my diagnoses letter says 6.. ) My labs were misread the the first time when I was told they were 600 and change. When my GP (who I really did like) told me she made mistake, the fatigue and HORRIBLE thrush made sense. But it was like the virus had kicked in the after burners. My first specialist had me dead by X-mas of that year.

I have a little piece of imagery I like to use - It runs kind of like a little movie in a little part of my brain constantly dedicated to being pissed off at this disease. I walk the halls of my mind, and down one of them there is a closet. I open this closet and there is HIV/AIDS, a little gollum-like character in chains. I drag him from the dark and kick the crap out of him for awhile then toss him back in to his little dungeon. As I walk away I can hear sort of whimpering, and I truly almost feel sorry for him. He is weak and small and cries easily. I pity him, but will not feed him. I just walk away until I walk that hall again - When I will beat him again.

My numbers now have my doctor (she's top shelf) shaking her head. Ive been on basically the same regimen of Sustiva and Trizivir since 99. Undetectable (except for one or two labs because Im stubborn and can be non-compliant.. TAKE YOUR MEDS lol) .. my t-cells are nearly 1000. My feet are a bit numb from a previous regimen of Hydrox, DDI, Zerit and one I can't recall. Im lucky because the neuropathy was very severe at one point. Hydrox is no longer used. If you're on meds, and you start to experience this, tell your doctor. Im fairly thin, mainly because I don't eat enough and Ive lost the fat on the bottom of my feet. Listen to your body. If you experience sides that last more than a few weeks, talk to your doc. MAKE them listen. If that doc won't listen, go somewhere else.

The real thing (in my mind) is to get your head right with this. I spent over a decade in the bottom of a bottle and that is NOT the answer. This disease can build a prison of your mind. How many days I've spent, looking through the small window of my cell - watching the world through a tiny portal by which nothing good passed. It can make you bitter, sad and - hard inside. Right now.... I'm out on parole sort of speak. Though I'm kind of a hermit, I have a wife who loves me - who's walked the hard road herself and buried beautiful friends.  Despite a business failing miserable, I'm working on going back out and getting a "real" job.. and fast.. just passed my DOT physical, know I can pass the written test and just need a rig for the road test. I'm going back to the road and a steady check - fingers crossed. The insurance is a concern but New York is probably the best state to wage war on this enemy (entitlement wise.. can make nearly 60k a year and have some assets, and still get help with drugs).

Ultimately, you will have to rely on yourself. "Love" leaves, but it can find you again. There are tons of drugs in the pipe, so IMO, don't rush. Watch and wait to make your move then make this virus pay - with it's life. Im pretty straight with my status. When I had to leave my job in 97, I received a letter from the owner of the company, encouraging me, and inviting me back. Not all employers are that way, and Ive had a one or two that were a little leary but f-em. HIV is still a dangerous disease, but there are more options, and a little less stigma today.

SO - cry if ya need to.. smash a few things if you must.. then wipe off the tears and put that brave face on.

My little brother sent me a few lines of this poem the other day.. he said it reminded him of me.. he struggles with his own demons.. about to be laid off form a company of over a decade's employ and now MS.. I really needed it at that time, cause let me tell ya.. the pressure will  be ON sometimes.. When you're really feeling under the gun, something will come your way.. if it doesn't come - go and find it...

Happy Trails For Now.. Will

Invictus by William Ernest Henley

OUT of the night that covers me,   
  Black as the Pit from pole to pole,   
I thank whatever gods may be   
  For my unconquerable soul.   
   
In the fell clutch of circumstance         
  I have not winced nor cried aloud.   
Under the bludgeonings of chance   
  My head is bloody, but unbowed.   
   
Beyond this place of wrath and tears   
  Looms but the Horror of the shade,   
And yet the menace of the years   
  Finds, and shall find, me unafraid.   
   
It matters not how strait the gate,   
  How charged with punishments the scroll,   
I am the master of my fate:   
  I am the captain of my soul.

Offline RAB

  • Member
  • Posts: 1,895
  • Joined March 2003
Re: could reply to a lot here.. but here's from an old hand..
« Reply #1 on: March 25, 2007, 10:44:05 AM »
Just need:

Welcome to the forums. 

WOW!

Remarkable post--(truly) that I hope everyone reads, great advice, powerful story, moving. 

(Love the part about keeping the virus chained, locked in a closet down a hall, and . . . . :))

Good luck to you on your new job search, I hope you keep us posted!

RAB

(another long termer)

Offline HIV? poz about being neg

  • Member
  • Posts: 160
Re: could reply to a lot here.. but here's from an old hand..
« Reply #2 on: March 26, 2007, 01:47:41 PM »
Thank you so much for posting your story, you have truly given me hope and I truly hope you find your glory.
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%
May/27/14    VL UD              CD4 750

Offline Miss Philicia

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  • Posts: 24,111
  • celebrity poster, faker & poser
Re: could reply to a lot here.. but here's from an old hand..
« Reply #3 on: March 26, 2007, 01:58:05 PM »
I haven't heard anyone mention hydroxyurea in ages.  I was on that for a while in the mid-90's and always wonder, as it is not FDA approved for HIV treatment and was considered "experimental" what it did to me in the long run.
"Iíve slept with enough men to know that Iím not gay"

Offline Esquare

  • Member
  • Posts: 237
Re: could reply to a lot here.. but here's from an old hand..
« Reply #4 on: March 27, 2007, 12:45:30 AM »
Greetings Just Need. I am newly diagnosed, well half a year now, time flies. My wife and I are making the best of our lives and moving on since my diagnosis. Hopefully the drugs keep me well for a long time, they have so far. It is very encouraging to read your post as it teaches me more about moving forward and keeping on. I hope to see you around the forums more often in the future. E

Offline Just_Need_A_Pain_Killer

  • Member
  • Posts: 8
Re: could reply to a lot here.. but here's from an old hand..
« Reply #5 on: March 27, 2007, 09:59:47 PM »
ESquare - Philly - RAB.. Im just beside myself.. (and I so appreciate your comments).. had a visit with docs today and I was just blown away!.. I want to make a post to all forums here, but I think the most appropriate is the "Living With HIV" forum.. please go and read it and TAKE HEART my friends!.. Philly.. I hear ya.. Im pretty damn certain it was the Hydorox that gave the neuropathy (was on it mid to late 90s as well).. .. could have been the DDI (which I just chewed up) but I had taken Zerit for 2 years with no adverse effects.. My numbers DID get a boost on that regimen, but I remember (J&J?) got a serious slap on the wrist for promoting the Hydrox as a treatment for HIV.. hard to say what the benefits were, but I sure I wish I had quit that stuff before it felt like I was walking on fire bricks lol..

Offline megasept

  • Member
  • Posts: 478
  • Steven here...
Re: could reply to a lot here.. but here's from an old hand..
« Reply #6 on: March 28, 2007, 01:20:53 AM »
"Welcome" seems a little lame after a wise and eloquent post like that. But, welcome!

I mainly work blue collar too, but can't handle anything more than two axles. NY State is better as far as social services. The huge shortage in truckers also ought to work in your favor. Maybe the employees are doing better than the owner/drivers these days. I think you'll have lots of work options. How about either short-haul or working in tandem (I think that's what it's called)? 

When an employer reaches out to you, that definitely feels right. It happened to me once. My coworkers and leads included a number of rednecks but the manager is a Buddhist convert (related?) who showed real love towards me when I revealed my HIV in a written exchange with him (after leaving employment).

Anyway, welcome!  8)  -megasept
« Last Edit: March 28, 2007, 01:28:38 AM by megasept »

 


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