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Author Topic: A dinosaur who survived the crunch  (Read 3101 times)

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Offline DannyW

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  • Posts: 2
A dinosaur who survived the crunch
« on: October 29, 2016, 01:00:47 pm »
Hi, i just arrived here.  Those of you familiar with "Company" will get the above reference.  That's pretty much how i feel these days.

In 1981, at the age of 18, and ridiculously sexually active after moving to the city at 16, i had a weeklong horrific illness (temps, explosive diarrhea, whole body in revolt) and all my lymph nodes came up (underarms, groin and neck), and they're still up 35y later, thankfully not noticeable or painful.  After visiting a bunch of drs for months to try to work out why my glands were still up after the acute illness had passed, i ended up seeing a fairly eminent immunologist in 1982, whose words have stayed with me since.  After taking my history and giving me a physical examination, we sat down and he said:  "There must be something going around because i've seen a dozen young men in exactly your situation, with exactly your symptoms."  And then the giant newspaper headlines began, "GRID", "gay cancer" etc etc. and all the hysteria and i'm sure some of you remember how it all went from there.  Many friends died.  My friend Richard died at 30 in 1986 and then his boyf, my friend Keith, died at 30 in 1991.  And then when *I* was 30 in 1994, my own tcells went to zero and i was on a deathwatch, hanging on somehow till the new combinations became available the next year and went straight on them and slowly my numbers crawled back up.  I don't know how, but i avoided any serious OIs during that time.  Luck.

I'm 53 now and was very healthy and fit till around the year 2000, when my lipodystrophy and other health problems really started.  It's been quite difficult, but i try and keep it together and swim laps when i can, eat a good diet.  Still, i have pretty severe chronic fatigue (i suspect from mitochondrial damage from the very early meds ... i started on AZT in the late 80s), and really, my lipodystrophy, which is severe, and seems to be resistant to sculptra treatment, is the dominant issue day to day now.  I can see myself moving towards being a shut-in at some point (although i fight against it), because i can't bear the looks and stares i get when i go anywhere in public.  When i'm with someone it makes it a little easier.  If anyone has any great coping mechanisms for withstanding the scrutiny when you have severe lipo i'd love to hear about them.  On a day when my energy levels are good and i feel more confident, it's somewhat easier, but it's still there.  I will be writing something over on the lipo forum and generally having a look around.

Thanks for reading (if you did!)

DannyW in Sydney.

Offline wolfter

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  • Posts: 5,471
Re: A dinosaur who survived the crunch
« Reply #1 on: October 30, 2016, 08:37:16 am »
welcome to the forums.  Wish I could provide something valuable in ways of coping.  I no longer have concerns of other peoples' opinion so I don't even think about them.   Back when I was a dead man walking with a skeletal frame, I had those fears for a while but soon realized my opinions of me were all that mattered.

take care and best wishes.

Being honest is not wronging others, continuing the dishonesty is.

Offline DannyW

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  • Posts: 2
Re: A dinosaur who survived the crunch
« Reply #2 on: October 30, 2016, 02:57:24 pm »
Yes i need to learn how to not care about the looks and stares.  I haven't got there yet.

Offline Wade

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Re: A dinosaur who survived the crunch
« Reply #3 on: October 31, 2016, 10:01:02 am »
Here's to the Ladies who Lunch...
I remember those days well and try not to think much about them anymore.
Living in a small gay resort town , I lost more friends than I can even remember, which is sad.  I also hate the term GRID to this day.

For the lipo...I was on the clinical trials for New Fill , which was later approved as Sculptra . It is only a temporary result at best and expensive as well.  I consider myself lucky, my face has filled in gradually on it's own in the past 15 years but it was very slow and I have read this from some others also.
Might have happened because I also developed fat deposits and had a hump surgically removed, who knows ?  That was a decade ago and has never come back.

There are some permanent facial fillers out there now have you tried any of those ?
I have learned through the years to wear my battle scars as a badge, god knows we earned them !
Anyway it was nice to meet you Danny and look forward to hearing more from you.

Best, Wade
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Offline stargate12

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  • Posts: 31
Re: A dinosaur who survived the crunch
« Reply #4 on: January 19, 2017, 02:37:06 am »

I have been infected in December 1988  I hade lymphoma, liver cancer, hepatites B and C  and many others illness  from 1993 to 1996 (lowest CD4 "9" )... And i m still here    - 54 years old -....
« Last Edit: January 19, 2017, 02:40:20 am by stargate12 »

Offline aztecan

  • Member
  • Posts: 5,522
  • 33 years positive, 61 years a pain in the butt
Re: A dinosaur who survived the crunch
« Reply #5 on: February 12, 2017, 10:18:14 pm »
Hi Danny,

Welcome from one dinosaur to another.
I also have had to deal with lips issues. While the lipoatrophy has more or less resolved after years away from AZT, etc., the lipshypertrophy is still very evident.

I had surgery to remove the hump. It was somewhat successful, although a humpette did return. Not as big as the original, but still there.

The bottom line is I finally stopped worrying about what others see. Part of that could be my age, 59, and part of it is just deciding that if all people see is the physical, I really don't want to deal with their negativity.

I hope you can find that "sweet spot," so to speak. Glad you're here.


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

Offline weasel

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  • Posts: 1,892
Re: A dinosaur who survived the crunch
« Reply #6 on: March 28, 2017, 10:13:16 am »

  Hi Danny !

     Nice to meet you  :)

       The only time I have issues with facial changes is when someone says to
    me , OH !   You guys don't look like twins !

     It really pisses me off , I've been POZ over half my life , I do not have any severe wasting , but the term " Identical "   makes me sad .

   Last week I went to a funeral with a cousin I had not seen in a few years , We
 sat down and she said : Oh GOD you look AWFUL !     I just said it is what it is .

  She asked the Minister to pray for me and my husband of 38 years , Bob has stage four cancer  :'(

   As for hiding , I do not really care what people think . I spent my young years afraid of my own shadow , Those days will never return .

   I hope you get to be more comfortable with going out , seclusion is not good
for any of us .

                                                            Be well ,
" Live and let Live "


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