POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: newbernswiss on August 12, 2007, 06:46:46 pm
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:P What is your biggest concern for living longer with HIV/AIDS?
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:P What is your biggest concern for living longer with HIV/AIDS?
Tough question. I'm not sure I can come up with one issue that concerns me the "most". There are so many issues that most of us LTS are struggling with.
I suppose for me, right now, it's the financial issue. I retired from a well paying job on January 1 of 1994 cause I was told I had 18 - 24 months to live. I gave up a lot then, but even more if you consider where I'd be today had that not happened. I also did as so many others and lived as if there were not many tomorrows. (Once on a extended Prednisone treatment I went out and bought a Camaro Z28--I hated that damn car!)
Today I'm fortunate that I have a small LTD income in addition to my SSDI. When I turn 65, that will go away.
Living on a fixed income makes paying the bills every month hard (especially when there is a huge disparity in income between my partner and myself--we split everything 50/50 and I won't let it be any other way.) Doing it when I'm over 65 and beyond, doing it for another 20 -25 years (I fully plan of living to a ripe old age!), that just seems impossible. I don't know how to fix that.
The close second is maintaining my access to quality health care and the prescriptions drugs that keep me alive.
These two alternate positions frequently, but today, it's the financial issue.
RAB
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My biggest fear is when will I start looking sick. I constantly try to work at getting past this fear. I tell myself that we are all going to get old sick and die regardless of what disease it is. All I can do is make the best of what I have now and have faith that I will handle anything else that comes up
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Learning to deal with the ailments associated with growing older - on top of living with the issues faced by we hi-fivers.
It is one thing to face living with PN, lipo, etc. But just when you get somewhat acclimated, mother nature begins to add on the other things such as cataracts, arthritis and the like.
Then you add in the things that may be age related, or HIV related, or HIV meds related, such as high cholesterol.
There are times when it is a bit overwhelming.
I guess the only answer is to roll with the punches and come up fighting.
HUGS,
Mark
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My biggest fear is when will I start looking sick.
My biggest fear is about when I will start to look old!!! LOL :D
I actually have lot of not fears, but concerns.... will i be married? will i be lonely? who will take care of me when i would be weak? when will my relatives start to leave this earth? will i go first? will i be last one? if i stay alive.. will i be able to take care of myself?
Actually the list grows and grows the more i think about it... so i took a decission... i won't think about it by now. When i become 50 or more i will try to answer some of those questions, even though.... life could have given me the answer for several of them by that time.
Juan Carlos (living a day at a time)
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Hey Juan Carlos,
I am 50. :'(
Actually, come to think of it, I am 50!!! ;D ;D ;D
To date, it beats the alternative.
HUGS,
Mark
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Hi,
I am a long term survivor, I live in Brisbane Australia, I was diagnosed in February 1986. I have several concerns right now and I am not sure how to address some of them but after going through the crap this virus has delivered us all, I'm sure the answers will come to me eventually. :)
My health has improved in the past couple of years, I am feeling the best I have in years. But my major concerns are what am I supposed to do with my life now that I'm clearly not going to die anytime soon, I mean seriously where do you head after not working in a fulltime since May 1994. I am on the Disability Support Pension (An Australian government pension), I am made to feel like a bludger by our homophobic, out of touch with reality, mean and tricky Federal government who has made it hard for us to survive let alone live. (please let them be turfed out at the soon to be announced Federal election) Thank goodness these cheapskates weren't in power when the epidemic started in Australia!
I suffer from debilitating peripheral neuropathy in my lower limbs, my fingers are always painful these days, I can't feel things with my fingers much now, my grip sometimes isn't great and I drop things because of it. I can't type or write for very long periods of time, my hand writing has become illegible to the point of being embarrassing and I take painkillers to reduce the discomfort, so working on painkillers would be a health and safety issue I suppose.
I know at this stage my health wouldn't stand fulltime work, and being in a deadend short term job would be boring after the things I used to do. I have thought about doing a University degree part-time, I have been studying French at Uni since last year so I would built a degree around that hopefully.
So I am at a cross road in my life. I now find myself in a position where I need to make the sorts of decisions I could have made 25 years ago but didn't because I left school at year 10 instead of going to year 12 and then onto Uni. Only difference is I'm a lot older and that is one thing I never thought I'd have to go through, was getting old!
There are so many issues it's hard to write them down but I hope this gives you an idea of how I'm going and the things I am now dealing with after years of illness. Finances are a huge barrier to doing lots of things and paying for some drugs that are not listed on our Pharmacutical Benefits Scheme. This is a great site and so many of your stories are truly inspirational, I will try to put one together in the next week to post on the "Introduce yourself" topic.
Until then take care and keep fighting your way through this as we now live in interesting times!
Hugs to all.
:)
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My health has improved in the past couple of years, I am feeling the best I have in years. But my major concerns are what am I supposed to do with my life now that I'm clearly not going to die anytime soon,
Double edged sword!! Great to still be alive, but there was also, for me, some relief in thinking I might die soon after years of waiting. But I faced that one 10 years ago and went back to doing what I do best - being a nurse.
I guess living with the continuing fear of descrimination is fairly high up there. But probably biggest is the fear that, having rebuilt my life to be better than it was before, I will have to face losing it again, sooner or later - could I face that bravely a second time?
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Hi,
I agree with Aztecan, I am 29.
I am 29 and counting.
I've been going with this for 13 years now, and I can only pray that I make it to 40.
But I was praying I'd make it to 30, and now I am 29.
I'll just keep on going and going until I don't.
Nicole
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:P What is your biggest concern for living longer with HIV/AIDS?
Preventing my brain, from turning to mush....Plus I am 55 years young, so I ain't no spring rooster !!
Ray
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1. Becoming a political radical who would be willing to risk anything and do anything to create change.
2. Staying young and beautiful -- I certainly subscribed to "live fast, die young and leave a pretty body" for years. Thank goodness I got a free face lift during my last brain surgery in Dec 1994, though I don't think I'll ever need the neurosurgeon again.
3. Being kept in a style to which I could grow accustomed in my golden years -- I'm fortunate enough to be able to save about 10% of my income now, and I push my partner to do the same, but living into my eighties and nineties like most of my elder relatives looks less attractive every year, though I'm certainly I'll still be a hot sexy Daddy at any age.
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staying sane...hoping treatment doesn"t stop working...also the effects HAART will eventually have on my body
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Dementia or Alzheimer's and not being able to take care of myself and have to depend on someone else. Being in a nursing home.
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Which is going to get me first, the virus or the complictions from the meds?
On the other hand, how long can I survive the financial strain and not become homeless and alone?
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:P What is your biggest concern for living longer with HIV/AIDS?
Less hair, less sex and more wrinkles.
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My biggest concern is when there will be no more meds that are not resistant to the four virus mutations (strains). I just learned this afternoon (Thursday) while with my doctor going over the genotype results, that Lexiva is resistant to three of my virus strains (mutations). But, there is no resistance to Truvada to any the four strains (mutations).
When I asked what this means, she replied, "currently there are no meds in the Lexiva class available that you are not resistant to". Then I asked if this meant another med holiday for awhile, she said afraid so.
Although, on the horizon, there is a third stage clinical drug trial for a new Lexiva class drug, she said I should consider becoming a participate to control the viral load that has risen to 87,000 and is sure to rise quite higher.
Hmmm..what should I do, I was thinking while she left to room, thinking about the horrible experiences in the past with drug trials.
Well, when she comes back in the exam room, my mind was made up. Next week is my birthday on the 29th and I am going to spend 4 days of my family on the coast. Of course, turning 51 next week, actually makes my 25th anniversary of 25 Years with HIV/AIDS.
I will give it some thought and will let her know when I see my doctor the 2ND Monday in September.
Although, I am feeling really well, stopped smoking for good and the depression is getting better since my psychic doctor started me on Lexapro.
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Less hair, less sex and more wrinkles.
In hindsight, that's not so scary.
;)
Mike
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There have been several things posted here that I hadn't thought about.
I'm not sure if that is a good thing or not.
Ever forward,
Mark
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I just thought of one....... running out of good places to draw blood.
In june at NIH and in April at Labcorp, the phlebotomists noted that my veins were getting doubly tough to puncture because of the scar tissue they've developed over the decades. They are deep and roll, to begin with.
Ugh..... and in just over four weeks I get poked again by Labcorp for my 104-week (2 years) off meds labs. When they come back, I fax them to my study coordinators at NIH and Mass General (elite controllers), then wait to see how much blood they want from me before Thanksgiving.
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Continuing access to good health care is probably my biggest concern. As health care costs escalate, it seems that each year my insurance becomes more expensive and more restrictive. I was able to get Fuzeon through my insurance, but they sure didn't make it easy. Raltegravir is due to be approved soon. If Merck prices it too high, I bet my health insurer will put up similar obstacles for continuing that drug.
My drug regimens have played havoc with my metabolism--high cholesterol, triglycerides, and glucose. I take meds for all these conditions, but I'm still way over the "normal" range on all these tests. I'm sure this will eventually take its toll on my physical health. I'm resistant to many drugs, so it's not possible to pick and choose a regimen that will minimize these side effects.
Allan
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Money will always be my major problem. I have a fixed amount of money to live on and no hopes of making more at this time. I get my health care through Ryan White and when things happen my doctor tells me that unless I can come up with the money then we cant do much to find out what is causing me problems since i cant afford to pay for the test or any meds not covered by Ryan White.
God bless this country and the morons who run it.
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My biggest worry at one time was how much time I have left? Focusing on health... how to maintain my health? Reading everything, anything etc... now here I am after 16 years of hiv... Now I worry about will I live 5 more years for full retirement? I'm selling material possessions that I've inherited, accumulated over the years... what will I do when I retire? how long will my insurance last through my retirement years? Will my income be enough? How should I re-invest for the future? Who do I give power of attorney? so many things I never thought I would need to do... What will I do when I can not argue with my doctors on my best treatment? so I'm just chilling and taking one day at a time... I remeber when one of my doctors was warning about the possibility of having a stroke or a heart attack from high triglicerides etc... I told the doctor... Would that be so bad if I just fell over dead? I have faith that I know where, who etc... I will be going and turned the conversation in their direction... Do you know? needless to say theyve never pursued more warnings... I'm just doing the best I can... if that's not enough then so be it!
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I have to agree with your tag line Dixieman, getting old ain't for sissies.
HUGS,
Mark
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Hi,
I am a long term survivor, I live in Brisbane Australia, I was diagnosed in February 1986. I have several concerns right now and I am not sure how to address some of them but after going through the crap this virus has delivered us all, I'm sure the answers will come to me eventually. :)
..I have been studying French at Uni since last year so I would built a degree around that hopefully.
So I am at a cross road in my life. I now find myself in a position where I need to make the sorts of decisions I could have made 25 years ago but didn't because I left school at year 10 instead of going to year 12 and then onto Uni. Only difference is I'm a lot older and that is one thing I never thought I'd have to go through, was getting old!
:)
OK, we're all afraid of being sick and poor, especially if poor means without the meds or care we need! That fear has caused me to save what I don't need to spend, over the last 25 years. When income is low, savings aren't possible. But maybe there are ways to add another income, no matter how small (the poorer you are, the more you will appreciate every additional dollar). Creativity is the key. And then jump in and see how it works!
Need more money? Love French? Tutor French! Tutor anything you're good at. I have a highly educated POZ friend who tutors "any" subject in his apartment. You could even work by webcam (still got to shave and wear a shirt). Survive if you must, but LIVE when you can!
8) -megasept
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I am not at all afraid of losing my looks and becoming old. It happens to every human and there is nothing we can do about it, HIV or not its a fact of life.
What does concern me is that is seems that being HIV poz intensifies the aging process and those things that may seem to be inconveniences to neggies will become serious maladies to deal with later in life.
My older relatives and friends complain about aches and pains in their 60s and 70s.....here I am at 48 and I am experiencing those same things now. I can't imagine living another 20+ years and having to deal with a body that is constantly wracked with pain due to arthritis and other such things.
Financially, I am fortunate to be in a good place and will be for years to come. We have a home that is paid for and at this point, it is comfortable......hope it stays that way.
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Very good question ???
My first thought concerns my initial reaction when triple combo drugs came into being and I realised I was not going to die so soon
Great - Stigma, now with a longer shelf life!
Seriously though, I guess what concerns me most about living longer with HIV/AIDS is ;
(a) I start to get physical symptoms like facial wasting and will not be able avoid detection therefore be subject to stigma all over again.
(b) I will finally get over my obstacles and personal fears and realise I'm 75 years old
(c) Be told I'm "too old" for something when I spent most my youth/adulthood life struggling with HIV issues
(d) get really worn down yet kept alive due to newer pills and cannot travel or be as wild as I want to be
(e) start to show really serious side effects to the drug trials undertaken during the 90's
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yea...as Buca says...the house is paid for..I just dont want to be alone....as in...all my friendfs are dead and I have noone.
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Hi,
I am a long term survivor, I live in Brisbane Australia, I was diagnosed in February 1986. I have several concerns right now and I am not sure how to address some of them but after going through the crap this virus has delivered us all, I'm sure the answers will come to me eventually. :)
OK, we're all afraid of being sick and poor, especially if poor means without the meds or care we need! That fear has caused me to save what I don't need to spend, over the last 25 years. When income is low, savings aren't possible. But maybe there are ways to add another income, no matter how small (the poorer you are, the more you will appreciate every additional dollar). Creativity is the key. And then jump in and see how it works!
Need more money? Love French? Tutor French! Tutor anything you're good at. I have a highly educated POZ friend who tutors "any" subject in his apartment. You could even work by webcam (still got to shave and wear a shirt). Survive if you must, but LIVE when you can!
8) -megasept
I agree however Australia does not have as much opportunity as America does in terms of diverse areas of employment nor does it have the modern social and intellectual mindset that America seems to explore - we are a democratic yet capitalist Banana Republic if you like! We have definitely gone backwards in leaps and bounds by way of HIV support and compassion. Aside from HIV stigma we are a very ageist culture. I also think the Disability Support Pension is misleading as the word "disability" itself creates stigma. I was never eligible for that in times of need and when I was really ill I had to hire lawyers to fight my insurer to pay me out. Skeetua, go do University - learn teaching or anything to get yourself out of this loop. I did two masters degrees after surviving lymphoma. I packed supermarket shelves at night for $22.00 hour while studying (good money). If you cannot afford University apply for a scholarship or HECS. Australia is not like our parents time. The golden age is over! We are not hand fed with wealth or opportunity anymore and you need to accept that reality. It can become a trap to be on a pension and rely on the Government or community to help you out. John Howard tapped into greed and Australian culture was hungry for it - those less fortunate were trampled in the stampede! Waiting for things to happen just wont happen and thinking a new Government will make things easier - think again. I think you are OK. Brisbane is a fantastic place - plenty of beaches and plenty of tourism. Learn French, move to Byron Bay and translate for tourism. You can do many things. Just don't become frustrated by Government or social issues and mix them with your personal concerns dealing with HIV. It will make you feel isolated and lost.
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Well, since my last post about this comment and reading what everyone said, I guess one of biggest concerns is if I make it into my 70's that I don't look like Donald Rumsfeld sprawled out on a nude beach somewhere.
Hospitals stays are a big concern of mine as I live longer and the level of care I will receive with medicare.
As someone said, all his friends are dead, alot of mine are to, but I always find ways to meet new friends without going to the bars. I have my dog, my 3 TVs, computer, Internet, cell and home phone, to call someone.
My ASO case managers always complains when I call her just to talk or request a volunteer for some help here at the house. But, as usual, nobody will come..
I at times, I find myself thinking about how many people will attend my funeral once pass away to enter heaven, I know God is watching over me.
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FEAR OF FINANCIAL INSECURITY !!!
gOOD OLD uNCLE sAM HAS HIS HAND SO DEEP IN MY POCKET IT IS RIDICULUS.