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Author Topic: Recent article in The Chicago Tribune accurately describes life as a LTS:  (Read 6890 times)

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Offline jm1953

  • Member
  • Posts: 295
This article explains my life living as an LTS to a tee.  Definitely worth a read.  Most likely you will relate to many things in the article.  I think one part that sticks with me is feeling like you are living in a body 20 years older than you are, this quoted from a 50 year old.  Also feeling out of the social loop because of fatigue, chronic pain, diet restrictions, and going to the doctor all the time.

Do you feel this article is somewhat representative of your life as an LTS?

http://www.msn.com/en-us/news/us/as-people-with-hiv-live-longer-aging-presents-challenges/ar-AAbY4a3
Positive 29 years. Diagnosed 10/1987.  Current CD 4: 720: Viral load: almost 100.  Current drug regimen, Tivicay, Emtriva, Endurant, Wellbutrin, Clonazepam, Uloric, Losartan Potassium,Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline mitch777

  • Member
  • Posts: 4,087
Articles such as this one always hit home with me as well.

I don't face as many ailments as those in the article but mine still make me feel a decade older on my better days and maybe 15-20 years older on my worst days which at this point brings me into the 66-76 age "feeling" range. (kinda like the HIV windchill factor.)

The first 20 years for me from infection seemed pretty easy-breezy but these past 12+ years have been getting much tougher in so many ways. Worsening fatigue, chronic pain, more gut issues, muscle loss, arthritis, isolation, 4 surgeries, depression and anxiety, and of course the never-ending medical visits.

I don't know too many LTS mountain climbers but I can say that I am not one of them. Still, I'm grateful to be alive.
33 years hiv+ with a curtsy.

Offline jm1953

  • Member
  • Posts: 295
Hey Mitch777.  Sounds like this article hit home for both of us.  And we share quite a few of the same health and emotional issues as you listed.

It's interesting when you mentioned the first 20 years being poz seemed easier to live a more normal life.  Same for me, and then I would say since 2007 strange things started to happen, seemed like I was falling apart.  Went to the doctor today and found out i have to have a blood procedure, kind of like a transfusion.  Also my kidney function is almost at stage 4 he said. 

I'm almost scared of going to the doctors, which like you, is often, to find out what new things they have found, or if a procedure is necessary.

I kind of figure there would have been more reactions to this article by LTS members, kind of sharing what they are going through, and just general feelings about this article.

The lack of response, aside from you, indicates perhaps there might be more LTS members who are very active and have a fairly normal life.  Or perhaps we all don't really want to look in the mirror, or are in denial, about talking openly about what ails us.  I guess the reality is this is a very individual disease, but I do believe Long Term Survivors are caught in a stigma and the public, and some doctors just don't know what to do with us.  I will say my family, and many of my friends have dropped off the map since I have gotten sicker.  Even those who are HIV but not as advanced.

My doctor today, who is an oncologist, said he doesn't hear much about AIDS anymore with Prep now on board, and newbies presented with a wealth of new, much less toxic medications than us old timers.  He seems very interested in my case, as I have unusual blood problems he has seen mainly in his very senior patients. 

I am trying to get the most out of life, but in my situation, it is now controlled by my being loyal to my schedule of doctors visits and procedures, which last year, by the way, totaled over 120.

Anyway, its good to hear you step us and share.  Your post actually really made me feel much better as I feel rather alone in all this.  And a little scared.

Thanks a bunch

JM
Positive 29 years. Diagnosed 10/1987.  Current CD 4: 720: Viral load: almost 100.  Current drug regimen, Tivicay, Emtriva, Endurant, Wellbutrin, Clonazepam, Uloric, Losartan Potassium,Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline mitch777

  • Member
  • Posts: 4,087
JM,

I know how discouraging it can get at times. During the past four years I had 200 medical appointments... one a week on average. 120 for you last year? Now that's a full time job!

If I can offer any encouragement it would be that this year I am down to a medical visit every other week, so far at least. Hopefully you will catch some breaks!

You never know why people respond here or not. I think the topic of aging with HIV has been discussed a few times. Also, many have casually mentioned the "getting older" factor while discussing their ailments of the moment in other posts. Some even like to be more private for many personal reasons.

I on the other hand wear my sleeve on my shoulder and whine. lol. As long as one doesn't go on forever about an in-grown toenail I think expressing one's life experiences, fears, sorrows and pain is helpful. This IS a support forum after all.

Wishing you my best with your blood procedure and your kidney issues.

Hugs,
Mark

33 years hiv+ with a curtsy.

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Greg Sanchez, the guy in the article, is a very good friend of mine.  I was in LeMac, the HIV organization he put together.  Even though he moved, we talk often. He's pretty remarkable and very, very sweet. It's a great article and trust me, he's sorely missed around here.

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline heartforyou

  • Member
  • Posts: 1,132
  • I must be a survivor in many ways...
I imagine it is a very personal thing.
Meaning some of us do feel like 20 years older, while other have more energy.

I do respond, although I am still very active skiing, hiking, doing yoga and graduating as an interpreter next year. All of this at age sixty and having spent more then half my life being hiv+. I only take my hiv meds, nothing else. Bloodpressure is fine  and so is my cholesterol.
But I don't smoke, do yoga a lot and drink a glass of wine or two every day.

I am only writing this to show that it can all be very different from person to person, but I do understand the position you're in.
I do share one experience, and that is the harsh periods we all have had  to work ourselves through, because of this virus.
I have suffered from depression more than once. And lost hope on more than one occasion.

I only hope we can all keep looking at the bright side of life, and that is that we survived...

love

Herman
Infected 1983. Diagnosed in 1987 and still kicking
Dovato once daily. Hydrea

Happiness is the freedom of breathing fresh air every day.

Offline flashdance

  • Member
  • Posts: 35
  • Reach out and touch me....
Re: Recent article in The Chicago Tribune accurately describes life as a LTS:
« Reply #6 on: September 02, 2015, 12:35:18 pm »
As my life has it own ups and downs....even with all of the concerns we report...coming back here from time to time always makes me feel better.
You are never alone...and if you start to feel lonely....search me out...or grab your cat!

Offline timmm55

  • Member
  • Posts: 51
  • Unapologetically HIV Undetectable
Re: Recent article in The Chicago Tribune accurately describes life as a LTS:
« Reply #7 on: September 14, 2015, 10:06:53 pm »
I imagine it is a very personal thing.
Meaning some of us do feel like 20 years older, while other have more energy.

I do respond, although I am still very active skiing, hiking, doing yoga and graduating as an interpreter next year. All of this at age sixty and having spent more then half my life being hiv+. I only take my hiv meds, nothing else. Bloodpressure is fine  and so is my cholesterol.
But I don't smoke, do yoga a lot and drink a glass of wine or two every day.

I am only writing this to show that it can all be very different from person to person, but I do understand the position you're in.
I do share one experience, and that is the harsh periods we all have had  to work ourselves through, because of this virus.
I have suffered from depression more than once. And lost hope on more than one occasion.

I only hope we can all keep looking at the bright side of life, and that is that we survived...

love

Herman

I think it depends on when you started meds and what your health was like then. POZ since 1985  (tested) probably 1982. I started the cocktail in 1997 with just under 400 T-cells. 1000 or so now.   I'll be 60 in November and am doing well. I do take a few other pills, I work out, work on my feet......HIV just hasn't been much of a problem.

Offline undeniable

  • Member
  • Posts: 17
Re: Recent article in The Chicago Tribune accurately describes life as a LTS:
« Reply #8 on: December 30, 2015, 07:21:43 pm »
Enjoyed the article..  It has been moved though.

http://www.chicagotribune.com/news/ct-aging-with-hiv-20150614-story.html
Speaking my peace to the past
I can't help but wonder, who is this wind at my back
A whisper to walk on, come on from all that

Undeniable by MAT KEARNEY

 


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