POZ Community Forums
Main Forums => Living With HIV => Topic started by: emeraldize on July 31, 2006, 02:12:14 am
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http://www.usatoday.com/news/health/2006-07-30-hiv-toll_x.htm
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Interesting article and I could not agree more. One thing I'm beginning to see at my doctors office is selective hearing. They simply don't listen to my concerns if I cast negative information about my health or life. They only appear to be interested in anything positive and try to ignore the negative, even to the point of recording only the positive information and deflecting the negative information to age related issues. They haven't acknowledged the possibility HIV or the meds may make some other problems worse.
BB
54 and aging
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Interesting article and I could not agree more. One thing I'm beginning to see at my doctors office is selective hearing. They simply don't listen to my concerns if I cast negative information about my health or life. They only appear to be interested in anything positive and try to ignore the negative, even to the point of recording only the positive information and deflecting the negative information to age related issues. They haven't acknowledged the possibility HIV or the meds may make some other problems worse.
BB
54 and aging
First off this is my first visit to this forum. And this article interests me the most.
Why??
Let me tell you a story. Keep sitting and get that coffee.
I am now approaching my 60th birthday. I was diagnosed at 50. At the time of being placed into a cancer ward (there was no other ward at that time) and told I had approx 4 days to live. Why you may ask did I let my health go so badly wrong. It was because of ignorance on my part and simply not knowing what was going wrong with me.
I was married (past tense) and had (another past tense) a daughter. My daughter was conceived when I still blissfully unaware of the doom that was coming my way. My wife died from AIDS when my daughter was 5 years old and my daughter died one year later. Both from AIDS and secondary to my ignorance.
In my 56th year I lost most all that I loved. I say most all, because I had another daughter who is still living and expecting my first grand child.
Since the horrific happenings in my life I have only one blessing left.
And because I am now nearly 60 the question arises as to how does the meds that have saved me so far effect my future.
Since I am on Retrovir and two other pills on a daily basis I have asked my doctor if the headaches I get are a result of these pills. The answer has been "maybe".
My headaches are getting worse but the good news is that all other functions are OK.
I once gave a Q & A session at a local high school about HIV and what it can bring. I told the truth and half the audience of mid teens were in tears at the end.
I still live a very active working life but is that all I have to look forward to in my private life???
At 60 and becoming a granddad is very exciting but I miss my wife and second daughter so much.
Yes all is not lost when you are 60. But there is NO private life.
If I sound confused it's because I am.
:( :'(
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Hey Portway,
Not to highjack the thread, but first, welcome to the forums and the family here. It is a great place to find support and to "let it all hang out," so to speak.
You have had more than your share of tragedies and I hope the people you meet here may help to at least take the edge off the void you now feel in your private life.
Now, regarding the article (even though it appeared in USA Today and is, as usual, short on particulars) I have often wondered if living with this bug hasn't contributed to some of the other maladies that seem to come with growing older.
I think we will hear a lot more about this as time passes.
HUGS,
Mark
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Yep Mark, as I enter my twilight years I often wonder is any particular ailment HIV related, age, or a combo of both. As the HIV population greys it becomes yet, one more thing to worry about. I can hear my HIV doc now, "shut up you old coot, and take your pills."
I'm 54, maybe we could start our own old folks home?
Hal
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Old age, dementia.....Dementia, old age...All I know is that
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Hi emerald...
I found this article interesting, too. I am two years into my 50's now, part of this growing segment of the Affected Community.
One of the reasons for my intense involvement in these LTNP studies has always been due to 'not knowing' the affects of HIV as my body and cells age...I've actually said this to the many researchers I have met!
One thing I'm noticing, a lot, is my short term memory is just not as sharp as it used to be...somedays I think I'd forget my head if it wasn't attached!
Thanks for posting the link!
My best,
Zephyr
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Since I'm approaching the delicate age of 51...this article was most interesting if not a confirmation of what I had already suspected. Getting older and being HIV positive Sucks!
Portway...Welcome to the forum. Tragedy and death are no strangers to you I see...My heart goes out to you for the loss of your wife and your daughter...you have my deepest sympathies. I'm glad you decided to join us here because I believe you will find all the information you need to make informed decisions and a great bunch of people who will provide the support we all need at times. Congradulations on the birth of your grandchild.
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Of course HIV/AIDS will cause certain complications, BUT, look at aging people in general...our bodies wear out, it's a matter of fact. At 63 with HIV and on meds I am doing quite well thank you. I now many from my past who are not poz and have much more serious problems than I. Each medical problem has it's pros and cons: everyone who smokes don't get heart disease or lung cancer for instance. Statistics can be used wisely for research or to incite riot.
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Turned 50 a few weeks ago. Have been doing on/off meds for several years. The off times are fine. Numbers have been getting worse. Now Dr. wants me to get on different meds with a whole set of side effects. Is it actually worth the sleepless nights, rash, bloating.. etc and the host of ancilary treatment to treat the side effects to basically up your numbers and avoid a potential opportunistic infection. Or try to live well feel good and possibly ( possibly) sucumb to an infection) I do not know but at 50 I have no desire to put up with all the yellow skin "Buffalo Hump" etc to simply prolong the hassles of a "side Effect" life. Really would rather have a shorter better "quality" of my days then to puke, squirt, burp and itch that ani't no way to enjoy life, is it?
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In the end the choice to medicate or not is personal. I choose my meds and luckily have mild side effects. I've seen the alternative to not taking meds, and I don't like it.
Good luck to you.
Hal
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We aren't going anywhere. 17 years of hiv drug abuse cant be good for you, but everyday above ground is a pretty good day. The real problem is some of us were told we only had a couple of years to live, and we lived like we it would be that way. 54.
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I don't get this part of the article:
Brenda Lee Curry, 61, a great-grandmother from New York who has been HIV-positive since 1985, takes as many as 10 medications a day for HIV, high blood pressure and hepatitis, among other conditions. Curry says she developed neuropathy — trembling in her hands — from mixing so many medicines. She also has had depression and has had trouble finding resources for older women with HIV. "But at this point, I do not let this disease define me," says Curry, who founded Copasetic Women, a support group for HIV-positive women over 50.
My God, her hands tremble, she has high BP,and she's depressed. Then she says "BUT AT THIS POINT I DO NOT LET THE DESEASE DEFINE ME.
gOOD gOD, ARE WE ALL BEING BRAINWASHED?/?
I am personally sick and tired of being told that "HIV?Aids is a "manageable disease." Please someone explain this to me? I think my friends, that the reverse may be true. Hiv/AIDS manages the person who has it.
How can Brenda Curry(above) possibly say that she doesn't let the disease define her? I'm thinking about that river in Egypt.
This is a dangerous message that seems to be accepted by many people. It sends the wrong message to our youth. By saying HIV is a manageable disease just makes it easier for young people or any people to shrug their shoulders and "So what. I can just take a pill and be done with it."
Am I losing my mind?
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This is a dangerous message that seems to be accepted by many people. It sends the wrong message to our youth. By saying HIV is a manageable disease just makes it easier for young people or any people to shrug their shoulders and "So what. I can just take a pill and be done with it."
Jeff is right l hear this all the time.All of my friends know l am poz see what the disease has done to me. In the terms of telling folks and side effects from the meds and yet.......
They all think like that well if i get it l will take the meds and be fine.
It is not only our youth thinking that but people in their late 20'and 30's.
So no Jeff your not loosing your mind.
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I was focusing on the combination of HIV and aging. I still believe that HIV ages us prematurely. I have no science to back this up, but it is something I have observed in others and myself.
I also wonder what effect the ARVs will have on our aging internal systems.
Of course, it could be that I'm just getting older!
I agree with Jeff and our dear Bluelove, manageable is in the eye of the beholder.
The lady with the quivering hands who won't let the disease define her is making a "brave" statement popular with the media and the masses. Fact is, this disease does redefine us.
It changes how we react to others, how we live our lives and often the quality of our lives. We can choose not to allow it to be the sole focus of our lives, but it will always be an integral part of our lives.
Saying this is a manageable disease is indeed a dangerous message, because it breeds complacency.
An aside to Domymonke. We are about the same age, so I feel I can be blunt. Dying from an OI is not pretty, not easy and not necessarily quick. The side effects from the meds are nothing compared to some of the OIs.
Treatment is a personal choice and I respect the choice others make. It doesn't mean I agree. I chose to take my meds and, 10 years later, I'm doing very well.
Yes, I have a few side effects to contend with, but I probabaly wouldn't be here today had I made a different choice.
Just sayin . . .
HUGS,
Mark
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I just turned 50 myself this past December (which was less than a month after my HIV+ status was confirmed.) I think it adds complexity to be 50 and to be HIV+. The models and assumptions undergirding a great deal of HIV treatment seem to not take into account the longer term and the aging process. To be fair, I am not sure how they could...for many years, the desire to simply extend life in a meaningful way, was the more achievable goal of HIV therapy.
I think of it this way. I did not voluntarily "sign on" for this ride...but then, neither does the person with heart disease, cancer, diabetes, and other life-alterning diseases. Yes, we sometimes engage in behaviors that contribute to these conditions, but as was said in another forum thread "we cannot prevent the proverbial bus from hitting us if we are in the wrong place at the wrong time." Even though i didn't sign up for this...I am here (well, still adjusting to that.) Those of us 50 and over are going to be the ones that demonstrate how one lives in the 50s and beyond with this disease. No doubt, our experiences--good and bad--will assist others who take this journey at a later time.
I do hope there will be more sensitivity to the unique problems of the "fifty something" generation of those of us with HIV+. But rather than succumbing in silence (going gently into that good night), I want to take a stab at living a happy, healthy, and productive life. The unique kind of support we give each other for example gives me a reason to hope that this kind of happiness is available to us, even if the rest of the world is much slower in acknowledging it.
I'm not trying to be "pie in the sky" about all of this--this really is a burden and the journey is vey difficult and quite uncertain. I guess I am at least glad at this moment that I am not by myself and that I am accompanied by others on the same journey, having similar experiences, sharing similar dreams and nightmares, and generally supporting each other.
I wonder what "sixty something" will look like!
Gary :D