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Author Topic: Recent article in The Chicago Tribune accurately describes life as a LTS:  (Read 277 times)

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Offline jm1953

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  • Posts: 283
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?

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: 4,022
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.
32 years hiv+ (oct. 2013) with a curtsy.

Offline jm1953

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  • Posts: 283
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

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

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  • Posts: 4,022

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.


32 years hiv+ (oct. 2013) with a curtsy.


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