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Author Topic: Pulled in two directions  (Read 4333 times)

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Offline kjonyou

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Pulled in two directions
« on: June 15, 2008, 04:44:21 PM »
As most of you long timers know, there was no hope in the early days which we some how seemed to make it through.  People testing positive today and being educated today such as doctors don't have this same kind of outlook.  So now I feel like I am being pulled in two directions and I don't know who to believe anymore. 

One the one hand, new doctors, psychologist are talking like its no longer a life ending disease if you take care of yourself.  Newly infected individuals have a great outlook for long term survival.  On the other hand, people who have lived with this for a long time know that its not that easy, people did drop like flys, and long term may be doable but with a lot of side issues and consequences.

I seem to be living in a world with two camps of people.  One group is total optimistic, doctors, family, friends (non of which are positive). The other group who watched people drop like flys, partners pass away, and doctors unable to help seem to be much more pessimistic, cautious and have sort of given up living out their dreams.  Many of these guys are living on Medi-Cal, SSI, Section 8 and given up on a career. 

My problem is I don't know who to believe.  I know its good to think positive (no pun intended) but all those people are negative so its easy to say that.  In some cases, its probably denial as its much easyer to pretend your family member will never get sick and die.  On the other hand, I have seen a lot of people sturgling with HIV and the side effects.  I know what some of theses feel like and I know working a regular job for some would be completely out of the question.  Their advice to me seems more practical for survival as they suggest it will be too late to be your own advocate by the time you are really feeling bad.  They know drugs fail, and remember it was a death sentence.

So my question is, which camp of thought do you think is more accurate?    Are the think positive people correct and everything is comming up roses or are they in some mild form of denial.   Conversly, do the long term survivors are suffering from a form post traumatic syndrome and ignoring all the good news or are they more closer to the truth since they have lived with it for 20 years?

P.S. I am not saying that all HIV postive people are this way, this is a generalization of my own little world of friends and supports groups, not trying to offend anyone doing great and felling great.

Offline bear60

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Re: Pulled in two directions
« Reply #1 on: June 15, 2008, 04:55:02 PM »
quote: So my question is, which camp of thought do you think is more accurate?    Are the think positive people correct and everything is comming up roses or are they in some mild form of denial.   Conversly, do the long term survivors are suffering from a form post traumatic syndrome and ignoring all the good news or are they more closer to the truth since they have lived with it for 20 years?
..........................................................
I just cant think in terms of black and white....one or the other.....which side are you on.  It is most likely that long timers have suffered more and have more problems with the meds. But newcomers to HIV are not all pictures of health. My impression is that its a crap shoot.
modified to say: crap shoot = roll of the dice.
Poz Bear Type in Philadelphia

Offline dgr20002

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Re: Pulled in two directions
« Reply #2 on: June 15, 2008, 05:39:19 PM »
I think the newly infected should have a very  good outlook because the virus hasn't wreaked havoc on them for many years and neither have the drugs. And by newly infected I mean just that, as opposed to newly diagnosed, but possibly infected for many years.

And I don't mean to be so blunt or to offend anyone but I also think those that have been infected many many years and are still waiting on a magic bullet or cure are kidding themselves. This virus wears you down. he meds keep it in check and they wear you down too. Eventually you will need different meds which will have different ways of wearing you down. So yes it is still a death sentence of sorts. It just takes longer to kill you.

All you can do is take the best care of yourself that you can and enjoy every day as if it may be your last.

That's the way I feel about all of it today anyway.... :-\

Offline BT65

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Re: Pulled in two directions
« Reply #3 on: June 15, 2008, 05:55:46 PM »
Well, heh.  I don't know that it's an all-or-nothing thing.  I know that 19 years ago, or even 12 years ago, I was expecting to die.   I believe living with the virus and all that surrounds that has taken quite a toll.  The meds today are certainly not as toxic as the ones that were used in the very early days.  But I wonder what permanent effects, if any, all those pre-HAART meds have had.

As far as a career, I've been on disability since 1994.  Right now I've got a year to go to complete my bachelor's.  I certainly don't have the enthusiasm about this that I would have had 20 years ago.  I don't see myself as ever being able to work full-time again.  Part of it is health issues (some other than HIV), part of it is I just can't afford to lose disability (Medicare etc.).  No insurance is going to cover me.  The waiting list where I live for ADAP and Ryan White is awful.  I do hope I can work part-time somewhere, at least to supplement my income.   But I certainly don't feel the same way I did when I graduated high school and was thinking about a career.

For people who just test positive and are in good health, there's no reason they shouldn't have positive outlooks.  For people who are HIV-, they really don't understand everything LTS's have gone through and still go through.  I don't try to argue the point with them; I just say "we obviously feel differently about this."  I find that the financial part is almost as hard as the physical part.  If life was "normal," I'd have a nice house, a couple cars etc.  I think being in the lower-class takes it toll on health also i.e. worrying about paying the bills, deciding which bill gets paid etc.    I'm not grim all the time, but sometimes reality does hit one in the face.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline aztecan

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Re: Pulled in two directions
« Reply #4 on: June 16, 2008, 10:50:47 AM »
If you had asked me these questions in 1985, when I tested positive, I know it would have been pretty black and white - we were all going to die and it wasn't going to be pretty.

Today, if I tested positive, I think my attitude would probably be much rosier.

But, as Joel and others said, life isn't black and white.

The truth is probably somewhere in the middle, in the grey area.

So, too, is life with HIV these days. If the new docs and newbie pozzies want to be Sally Sunshine, let them. Eventually, life has a way of tempering such an outlook with a dose of reality.

On the other hand, it isn't all gloom and doom either. We have many new meds, a lot of new hope and the fact that some of us have managed to survive 20 or more years with the bug shows at least some tenacity.

So, greet the morning with a zest for life and make the most out of what you have.

That's about all we can do at this point.

HUGS,

Mark


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

Offline AlanBama

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Re: Pulled in two directions
« Reply #5 on: June 16, 2008, 03:08:27 PM »
I agree with dgr -- this virus does "wear you down"...it and all of the associated issues that accompany it.

We've had the "long termers attitude" vs. "newbie attitude" debates and discussions so many times in the LIVING WITH forum, it isn't even funny.   I'm not having that debate again.   If people are well, feeling great, and have a sunny outlook (and some not even on meds yet) I think they have every right to be positive and hopeful.

However, that just isn't reality for most of us LTSers.   As Betty so correctly states, the financial issues are a tremendous part of it all.   Being on disability, being unable to work full-time at a "real" job, no insurance....it all just gets to be too much sometimes.  (though some LTSers, like Mark, have never been on disability and continue to pursue their careers).   I just don't try to make too many generalizations, or paint with "big brushstrokes".   It's different for everybody, in every situation.

I consider myself to be grimly optimistic.   I hope for the best, but sometimes expect the worst.   I think a lot of my survival has been faith, support, good medical care (in earlier years, not so hot these days) and mainly just bulldog obstinancy.   I was not going to die just because my doctor said I had to, and I told him so.

I watched a great show on Oprah the other day, with Louise Hay and some other kinda 'new age' philosophers, who firmly believe that what we project OUT to the Universe (i.e. positive thoughts, what we DO deserve, etc) will come back to us.   I'm trying to work on that, and not concentrate so much on "gee, I'll never be able to go on that trip" or "I'll never be able to buy new furniture".   I've started visualizing myself living on lovely new Ethan Allen furniture.....what can it hurt? ;)

hugs,
Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline kjonyou

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Re: Pulled in two directions
« Reply #6 on: June 16, 2008, 06:49:03 PM »
 I've started visualizing myself living on lovely new Ethan Allen furniture.....what can it hurt? ;)

hugs,
Alan

If its Ethan Allen, chances are it will hurt a lot :)  .....Dream bigger!

Offline AlanBama

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Re: Pulled in two directions
« Reply #7 on: June 16, 2008, 10:00:49 PM »
Ethan Allen, Rooms to Go, just ANYTHING would be great!   I haven't bought a new piece of furniture in.......too long to remember.

Visualize:  me and new furniture, with black cat hair all over it......LOL
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline MarcoPoz

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Re: Pulled in two directions
« Reply #8 on: June 17, 2008, 02:51:55 PM »
Great topic!

I've never been out of work since my diagnoses.  I also haven't had some of the devistation that others have suffered.  My own little path has been hard and in moments, wonderful.  I lived SO long thinking in terms of six months-to a year down the road.  Its still hard for me to conceptualize the 'future'.  I fuck up whenever I plan anything so I'm begining to think that the whole in-the-moment outlook isn't so bad after all.  It fits with my spirituality and ADHD ;-)  Even now knowing that at any moment my brain might decide to take a short-circuited power nap, I find peace in hoping I can be the kind of man I've always wanted to be--and that only has to happen during the next breath.

Then I lose my focus--get spastic and pissed... fall into depression...then there's that one moment again---a next breath and I'm balanced on top of the ball again.

-marco

Offline kjonyou

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Re: Pulled in two directions
« Reply #9 on: June 17, 2008, 11:04:46 PM »
I agree with all you guys, I know its not black and white, I am sure its in the middle somewhere but I just cant help feeling that people in my life who are negative find it much easier for THEM to feel good if this only listen to positive feedback because it allows them not to have to think about the worst.

I just had a conversation with one of my family members and before I could finish what I was saying they were cutting me off with how their doctor friend says it just like Diabetes.  Franky, I am tired of that comparison.  Besides the fact we can get that too, its not a fair analogy.  For one thing type 2 Diabetes can be controlled with diet, we have to take a hand full of toxic pills.  Secondly, there is no stigma like their is with AIDS.  Third, its not visually apparent like HIV.  And fourth, they don't burn through the medications is a few years like some of us do.  Its really a disservices to all of us when that comparison is made.  I am not saying Diabetes is not a serious disease, it is, but its also very different.

I realize doctors need to be optimistic, but the ones that use that comparison who are not even HIV docs are giving people false perception of reality.  In my world, its my family that seem to latch onto that everytime I tell them what's going on.  I get a "don't worry, you will be fine just take care of yourself" which is not something you would say to someone with Cancer, so why is that OK for HIV?

Doctors are not always correct even in large groups.  I seem to remember in the early days they were almost all in agreement they would find a cure within 5 years.  How did their expert advice pan out hu?

Even one of my own family members who is in the medical field, has known about my status for 20 years, saw my ex partner die and attended his funeral 2 years after I tested positive will now not even admit that back then it was a death sentence.  They only want to talk about how its like Diabetes.  While I agree its not a death sentence if you got infected today, it was back then and most of us who have made it this far have paid some price for that.

So what do you say to firends or family like that who obviously care, but don't want to hear the truth from someone who is actually going through this?  I fell like I am being looked at like some kind of hypochondriac because their doctor friend told them I would probably out live them or they read in some magazine about how many meds are on the market for HIV.

Offline Miss Philicia

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Re: Pulled in two directions
« Reply #10 on: June 17, 2008, 11:18:46 PM »

So what do you say to firends or family like that who obviously care, but don't want to hear the truth from someone who is actually going through this? 

1) I don't have to say much of anything, because they can all look at me over the past 7 years and see how lipo has sunken my face in.  Guess I'm lucky.

2)  I can then always tell them that my HIV meds didn't suppress my viral load for an entire 13 years, and that it wasn't until 2 years ago I even achieved that.  And to get there I ended up having to inject myself twice a day with Fuzeon, because I'm resistant to so many HIV meds.

3)  I can tell them endless tales of shitting in pants in public due to various protease inhibitors, or getting testosterone injects every other week for 4 years, or... or... or...

countless things

But it's different for everyone.  If you're no having, or haven't had, similar experiences then it's not going to mean much to your family.

I'm not sure what answers you want here -- you said, I see, in another thread that you've been positive for 20 years.  Why is this issue just coming up for you right now?  Hasn't your family seen what's gone on with you?  Or have you not had many health hurdles until recently or what?

Sorry, I'm a bit confused.
"Iíve slept with enough men to know that Iím not gay"

Offline kjonyou

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Re: Pulled in two directions
« Reply #11 on: June 18, 2008, 10:23:12 PM »

I'm not sure what answers you want here -- you said, I see, in another thread that you've been positive for 20 years.  Why is this issue just coming up for you right now?  Hasn't your family seen what's gone on with you?  Or have you not had many health hurdles until recently or what?

Sorry, I'm a bit confused.

Well, to awnser your question, my family knew 20 years ago, they went to my partners funeral, they cried when they found out but over time, since I didn't talk about crap in my pants, or being dizzy, or tired on a regular basis or the wasting going on in my legs and arms everytime we got together, they basically assumed don't ask don't tell approach.  I would bring it up from time to time but they almost never asked because I would talk about it.  Now that I have been bringing it up more I am realizing they don't want to face it.  They seem to make all sort of excuses about how it could be a lot worse.   They were not like that in the beginning, but some how because I am still around they think it has magically gone away.  I have been trying to make them aware of whats been going on lately but they just seem to tune it out to the point I have to reexplain for example that just because there are dozens of drugs to pick from, being resistant to one class eliminates a hand full of options at a time.  Their in the medical field, that kind of thing should register with them.  They do not live with me so they dont see the day to day.  But even speaking with them on the phone they say things like "we are all getting older".  ???

Offline Tempeboy

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Re: Pulled in two directions
« Reply #12 on: June 18, 2008, 10:45:04 PM »
Hey kj

I hear you,

Even though it can be true to say that HIV is no longer a terminal illness, but a chronic health issue (all things being equal) the experience of living long term with HIV is tough.

There is the trauma of having lived through the epidemic, current and ongoing health issues as well as concerns about the future.  From time to time it's a real f*&^%ing pain.

Good read - http://positivelife.org.au/files/GOWIA.pdf

cheers babe,

keep the faith.
Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

Dean Kiley

Offline OneTampa

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Re: Pulled in two directions
« Reply #13 on: June 20, 2008, 08:04:33 PM »
Excellent discussion.  I can relate to each and every one of you and still post a slightly different experience.  As someone who has been HIV+ for 22 years, I too was told in 1986 that I had--at most--a year to live. I absolutely did not believe my doctor and told him so, in no uncertain terms.  Today, I have the same doctor, and have taught HIM a thing or two.

As far as the attitude thing goes, I am naturally a positive (also no pun intended) thinking person and have mostly remained so.  Yet, I too, can tell you that being HIV+ all these years has not been a picnic in the park on a nice Spring day.  True, I have had no major illness or truly awful reactions to the medications except the lipo that stopped about ten years ago after I went off Crixivan. The lipo blew my self esteem but I kept working, earned my undergraduate degree and am now finishing a graduate degree. I only recently got a Sculptra makeover and kept on trucking.  Sadness sometimes overwhelms me when I recall the deaths of my partner, friends and family members from various  ailments and yet I remain grateful and rebound knowing that I was around to see my son and my partners children grow up.

Nowadays I swing back and forth sometimes between hope and joy that I am alive and feeling well and other times I think at 22 years I may  be approaching my expiration date.  That is when I get scared and think about all the medications I've taken all these years  and the toll they are taking on my body chemistry.   

I guess to sum up, the difference I see today with the newly infected is that doctors do not immediately assume that they  will be dead in six months like the old days. Newly infected people are at least given some semblance of hope that they will have some longevity. Of course, the new cadre of medications help.   We long term survivors in the early days had to find the strength to manufacture our own hope.
« Last Edit: June 20, 2008, 08:07:44 PM by OneTampa »
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaŪto frito."

Offline BT65

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Re: Pulled in two directions
« Reply #14 on: June 20, 2008, 08:50:16 PM »
 We long term survivors in the early days had to find the strength to manufacture our own hope.

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

Offline Peter Staley

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Re: Pulled in two directions
« Reply #15 on: June 21, 2008, 10:40:34 AM »
Excellent discussion.  I can relate to each and every one of you and still post a slightly different experience.  As someone who has been HIV+ for 22 years, I too was told in 1986 that I had--at most--a year to live. I absolutely did not believe my doctor and told him so, in no uncertain terms.  Today, I have the same doctor, and have taught HIM a thing or two.

As far as the attitude thing goes, I am naturally a positive (also no pun intended) thinking person and have mostly remained so.  Yet, I too, can tell you that being HIV+ all these years has not been a picnic in the park on a nice Spring day.  True, I have had no major illness or truly awful reactions to the medications except the lipo that stopped about ten years ago after I went off Crixivan. The lipo blew my self esteem but I kept working, earned my undergraduate degree and am now finishing a graduate degree. I only recently got a Sculptra makeover and kept on trucking.  Sadness sometimes overwhelms me when I recall the deaths of my partner, friends and family members from various  ailments and yet I remain grateful and rebound knowing that I was around to see my son and my partners children grow up.

Nowadays I swing back and forth sometimes between hope and joy that I am alive and feeling well and other times I think at 22 years I may  be approaching my expiration date.  That is when I get scared and think about all the medications I've taken all these years  and the toll they are taking on my body chemistry.   

I guess to sum up, the difference I see today with the newly infected is that doctors do not immediately assume that they  will be dead in six months like the old days. Newly infected people are at least given some semblance of hope that they will have some longevity. Of course, the new cadre of medications help.   We long term survivors in the early days had to find the strength to manufacture our own hope.

OneTampa -- thanks for that beautiful post.  I related to much of what you said.

Peter

Offline aztecan

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Re: Pulled in two directions
« Reply #16 on: June 22, 2008, 06:46:13 PM »

IWe long term survivors in the early days had to find the strength to manufacture our own hope.

Beautifully put.

HUGS,

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

 


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