POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: aztecan on February 20, 2011, 05:27:06 pm
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After surviving a foray into the Living With forum, I decided to post this is more familiar territory.
As Alan said, I really can't expect someone diagnosed in the last decade to understand where I am coming from.
Recently on The Body, there was a study about longevity for pozzies, and the statement was made that the average life expectancy for someone with HIV is 69. The catch is, that is the average and would include those recently diagnosed who have access to good medical care, meds, etc.
I know that isn't always the case, but that is another topic.
What I find scary is 69 may sound old if you are 30, but I will be 54 this year. That means that, if my life follows the average pattern, I have slightly more than 15 years left on this planet.
I find that scary, not because I fear death, but because of what may precede it. I watch my elderly mother as she tries to adapt to the ever-growing list of health concerns, and I know that, thanks to the virus, internally I am catching up with her.
I see threads posted about lipo worries and getting Medicare to pay for facial fillers, but nobody is talking about our dirty little secret. HIV is causing us to age rapidly, giving many of us in our mid 50s the immune system of someone in their 70s or 80s.
I have noticed changes in my body. Regardless of how much I exercise, I cannot seem to stay in shape. There are flabby deposits showing up and my body just feels differently than it used to.
My counts are still good, the HIV is controlled, at least in the bloodstream. But the rest of me seems to be heading down the road to senior citizenship at a rapid pace.
Perhaps I am just feeling out of sorts, but I can't help but wonder what the next decade or so has in store for me.
During the first decade after I learned I was positive, back when treatments either didn't exist or, later, were very limited, I developed a mindset of living for the day, not counting on having any tomorrows, and hoping that, when my time came, I would die quickly and with minimal pain.
Fast forward to today. Living with HIV for 25-plus years has taken its toll on me. I still try to live for today, but it isn't as easy as it once was. Every time I think I have things under control, something new is added to the mix. Sometimes it is side effects of the meds, other times side effects of the virus, often a combination of both.
It is like running on a treadmill. At some point, you just get tired.
Now, I am facing becoming elderly 20 years early. That prospect frightens me, because getting old isn't for sissies.
I am just not ready for that yet. I was hoping to remain active and vibrant until time finally took its inevitable toll. I never planned on that prospect being placed on fast forward.
I guess I have no choice, just as we didn't 30 years ago. But I am becoming tired of being a pioneer.
Just my rant for the day. If feels good just to get it out.
HUGS,
Mark
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Hello Mark,
You are so spot on in many ways. I'll be 60 this year ( in December, which will put me at 26 years of living with HIV, and 8 years on meds. I am going to try to respond more later on. meantime, the forums are causing to many problems right now. Too many pop-ups going on. These popups are showing up right over the post box.
Your right, no matter how much one exercises, it doesn't seem to have much if any affect. More later on...
Ray
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I think about this often myself , because of my age its getting to the point where I wonder if the pain of going to gym is really worth it .
I'm not in a relationship so I'm going to wait a bit before I give up and let myself go like so many of my married friends ... J/K kind of .
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Rapid aging of T-cells after HIV infection:
http://www.aidsmap.com/page/1624151/
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Perhaps those of us who outlived our contemporaries have a better chance. I believe a lot of our success at living so long came from sheer inner strength. Maybe we'll have to draw upon that strength again in our golden years.
As Dolly always says, I don't plan on aging gracfully, I plan on fighting it every step of the way.
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Oh, look on the bright side -- if the shit starts hitting the fan you can always hasten the demise by halting your daily med intake. Personally I have no desire to be 80 years old in a rest home playing scrabble.
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Recently on The Body, there was a study about longevity for pozzies, and the statement was made that the average life expectancy for someone with HIV is 69. The catch is, that is the average and would include those recently diagnosed who have access to good medical care, meds, etc.
Oh, look on the bright side -- if the shit starts hitting the fan you can always hasten the demise by halting your daily med intake. Personally I have no desire to be 80 years old in a rest home playing scrabble.
Jayzus, I almost forgot I turn 69 this September. My days are truly numbered. I had been doing pretty well, thank you, all things considered, but now not so. Last week the Governor of Connecticut decided to delete all ADAP state funding from his budget, and if the state legislature agrees, I'm a goner. The shit (and everything else) will hit the fan. I will indeed have to halt my daily med intake. I don't qualify for Medicaid because of my measly Social Security, and I can't get into a Big Pharma Patient Assistance Program because I'm on Medicare Part D. Don't know how I can get my daily ARVs. Sayonara.
Too bad, really, because it's in the genes. My 93-year-old father is in a "rest home," but he don't play Scrabble, that's for sure. And my great-grandmother in Poland lived to 110.
And I was looking forward to aggravating Miss P for 20 more years....
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Too bad, really, because it's in the genes. My 93-year-old father is in a "rest home," but he don't play Scrabble, that's for sure. And my great-grandmother in Poland lived to 110.
I'm afraid of the genetics for myself too. There I thought I wasn't going to make it out of my 30s, as I kept ending up in the hospital on my birthdays, and yet in a few weeks I'll be 49 and frankly doing fairly well. (Well, except for already feeling 69.) I just returned from visitng my 93-yr old grandmother (her mom lived to be 98) who still lives alone unassisted, drives herself and her friends around, does the crossword puzzles first thing every morning, takes only a few pills, and still cross-stitches.
Egads! Just thinking I might have another 20 yrs (to reach that study's age), much less maybe 44 yrs (to reach Nana's age), living on disability and taking meds is too scary to fully contemplate. :D
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Oh, look on the bright side -- if the shit starts hitting the fan you can always hasten the demise by halting your daily med intake. Personally I have no desire to be 80 years old in a rest home playing scrabble.
I don't know whether that would hasten my demise. I went 11 years without meds after diagnosis and my CD4s never dropped below 400.
And, based on my mother's side of the family, they don't live to 80, they live to 90 and beyond. Good Slavic stock, you know.
But since I am already starting to experience some minor geriatric complications, I can but wonder what living another 30 or 40 years will include.
Oh, and Philly honey, you know you won't be playing scrabble, you'll be chasing the other old farts in the nursing home, whether they want you to or not. ;)
HUGS,
Mark
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Mark,
I always appreciate what you have to say.
Thank you.
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Hoover, I understand that you mean well, but as someone who was not diagnosed before 1996, you are not permitted to post in the LTS forum. Please read the Welcome thread that appears at the top of this forum.
Do not post in this forum again. Thank you for your cooperation.
Ann
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Jayzus, I almost forgot I turn 69 this September. My days are truly numbered. I had been doing pretty well, thank you, all things considered, but now not so. Last week the Governor of Connecticut decided to delete all ADAP state funding from his budget, and if the state legislature agrees, I'm a goner. The shit (and everything else) will hit the fan. I will indeed have to halt my daily med intake. I don't qualify for Medicaid because of my measly Social Security, and I can't get into a Big Pharma Patient Assistance Program because I'm on Medicare Part D. Don't know how I can get my daily ARVs. Sayonara.
Too bad, really, because it's in the genes. My 93-year-old father is in a "rest home," but he don't play Scrabble, that's for sure. And my great-grandmother in Poland lived to 110.
And I was looking forward to aggravating Miss P for 20 more years....
edfu- Will Medicare not pay for your meds? Since I am only 55 I haven't researched my options for obtaining Meds should I live to retirement age.
Billy
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No offense David, but I think refusing to eat would be a quicker demise than stopping meds.
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Billy
Wish it was that uncomplicated my freind. Kurt and I are now both on Medicare. He: due to Disability and me due to age.
He, for example, is eligible for ADAP. Medicare does not pay for drugs.
I, however, have the Medicare plan PLUS a supplemental plan that includes a prescription plan. In my case Medicare is not paying for drugs either.
There are several people here who have this Medicare nightmare with the dreaded :"donut hole" where you have to pay for all your meds until you reach a certain $$$$. Maybe they will chip in.
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Mark
Its hard not to see how my partner Kurt has aged. He looks older than me and he is 12 years younger. On the plus side he is in pretty good health right now. After some rough times he is stable and feeling good. So.....he is off to Germany for a month to study German at the Goethe Institute.
Live for the day.
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Mark, I wouldn't worry too much about your demise, just live your life, whatever is left of it, I'm considering moving into a senior's 55+ living, as I'll be 55 this yr. I look at it this way, at least I'll be around others my age
and if all I have is a good 15 to 20 yrs of life left, then, I d better get my ass-in-gear.
I still want to see a few places right here in the US, before my demise, I've been across the USA in my lifetime, and lived in several large cities, but, I haven't seen everything in the US yet, of course, all of this is contingent on if I can afford to do any of this at all , and if I remain healthy enough to even do any of this, it's always been a goal of mine, so that alone keeps me going, and gives me a reason to live for something ;)
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Mark
You sweet young thang...I'll be 58 in 8days :o What happened to February. It was just Valentines Day...and that Groundhog needs to be fired.
Why don't we just open a B&B on the beach and play Bingo, and Yahtzee while taking care of the guests? ;D
I appreciate you
and fully expect you to be around for many years.
You have too much knowledge and experience not to do otherwise. ;)
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edfu- Will Medicare not pay for your meds? Since I am only 55 I haven't researched my options for obtaining Meds should I live to retirement age.
Billy
Medicare alone, Part A and Part B, does not pay for meds. You need to acquire Medicare Part D for any (partial) medication payments, and that usually requires an additional monthly premium, ranging from c. $30 to $100+. Those of us living on Social Security income of less than $20,000 cannot even afford those premiums. The only alternative is to acquire a Medicare Advantage plan with a private insurance company that provides Part D with no additional premium. The disadvantage with that is that you are limited to the private insurance plan's network of doctors and hospitals, which can be a real problem when that network's providers are unfamiliar with the co-morbidities of HIV disease, as I have sorrowfully learned.
Part D will change in 2014, when Obamacare goes into full effect, if indeed it does, and some of its provisions will change in 2011, but I haven't completely researched all of that. In my case, I cannot wait until 2014. Drug costs are supposed to be discounted in 2011 during the Coverage Gap, known as the donut hole, but that means only that you will remain in the gap even longer. For now, this is how Part D works, in three stages.
1. Initial Coverage Period. You generally pay a copayment/coinsurance for each prescription. The initial coverage period ends when your total drug costs reach the initial coverage limit of $2,830 during the coverage year. The total costs for your drugs in this period include the amount Part D, you, and all others making payments on your behalf have paid for your prescriptions so far this coverage year.
2. The dreaded Coverage Gap. This is the period after the initial coverage limit during which you and others making payments on your behalf are responsible for ALL your drug costs. Part D doesn't cover any drug costs during this period. This period ends when you spend $4,550 in out-of-pocket costs.
3. Catastrophic Coverage. This period begins once your out-of-pocket drug costs reach $4,550. This is the period when you pay the GREATER of either 5% coinsurance or up to a $6.30 copayment for your covered drugs for the remainder of the coverage year. (Guess which of the two alterrnatives is applicable for ARV costs.)
How does this work in reality? Here is my own example. For calendar year 2010 I was covered by a premium-free Medicare Advantage Part D and by ADAP. My total drug costs for calendar year 2010 were $28,162 (gasp). Of that total, $5,626 was paid by ADAP, and the balance by my Part D.
I can't afford the $5,626 that ADAP paid last year, since my only annual income, after deductions for my Medicare Part B, for medical insurance (yes--you have to pay a monthly premium for that as well), is $18,492, my age-related Social Security.
Frightening, isn't it?
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I can't even use my medicare part D, if I do use this, I wouldn't be able to afford ANY of my H.A.R.R.T meds on part D as this would cost me almost half of my monthly income, so luckly my local ASO put me in my States
Insurance risk pool, and this pays for my ADAP Meds, however all of my other non-aids-meds, I have to pay for outta pocket, like lipitor being the most expensive $115 a month, well after paying 2 months of that I enrolled in the lipitor assistance plan, (qualified for this due to my income) so I will hopefully get a whole yr. of lipitor at no cost to me, all of my other non-HIV meds are all different prices form $10 to $20 a month, yeah this stuff is very scary, and seems to get worse every yr that passes ??? if i have to chose between MEDS or FOOD
guess what I'll chose, screw the MEDS, if I can no longer afford them, @ my income level I almost can't afford them anymore, and I can't get medicaid, I make a dollar to much to qualify for that ???
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I always think that I am too young, to feel this old. But old I feel and I guess I just don't care. I'm living on borrowed time and while I do not welcome death, I think I'll be ready for a rest, when the time comes. Living with HIV is damn hard work and I am damn tired of being tired. I know you know what I mean and I see no reason to worry about things that may never happen, or over which I have no control. I have enough challenge in my life, without borrowing worries from the future.
Stephen and I have a pact, that if life gets too shitty, we go together and that works for me. I always thought I would fear death, but strangely, the closer I come to it, the more comforting I find the thought.
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But, what if you found out that you would have to make the decision between food or meds? what would you choose? and I DON'T say this lightly cause this is what we all might be faced with, if our Govt. doesn't get it's shit together about ADAP & AIDS funding, this is a very scary reality NOW playing out in a lot of States here in the good ole USA.....
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Food or meds is horrific. However, it can get even worse. Food or rent or meds. Trifecta!!!
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Food or meds is horrific. However, it can get even worse. Food or rent or meds. Trifecta!!!
Yeah I remember 35 to 40 yrs ago when most SSA recipients had to eat Dog Food cause they couldn't afford to buy any food, of course, your 15 yrs older than me, so I think you may recall hearing this back then....I wouldn't eat Dog Chow now-a-days as most of it is made in China, and we just don't know what's in it :D
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I always think that I am too young, to feel this old. But old I feel and I guess I just don't care. I'm living on borrowed time and while I do not welcome death, I think I'll be ready for a rest, when the time comes. Living with HIV is damn hard work and I am damn tired of being tired. I know you know what I mean and I see no reason to worry about things that may never happen, or over which I have no control. I have enough challenge in my life, without borrowing worries from the future.
Stephen and I have a pact, that if life gets too shitty, we go together and that works for me. I always thought I would fear death, but strangely, the closer I come to it, the more comforting I find the thought.
I think we get to a point somtimes where death seems like the easy-out. Not long ago, I was welcoming Mr Death as I'm no longer scared of him either. Throughout the years I've had many dates with him, and I was engaged to him not long ago. This last illness brought about a peace that I can't express. I don't want to expire but am no longer terrified by the prospect.
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Mark, I turned 54 last November. I feel like you and I are so alike, in many ways; perhaps we were "separated at birth" or something...LOL. Anyway, your post hits home with me honey. I am on that treadmill with you, and to tell you the honest truth, if it all ended tomorrow it wouldn't be that damn bad as far as I'm concerned. I've had a good life, been given a lot of years that I never thought I'd live to see. Sure, I'd like to see my niece have children (she's my closest thing to a 'child of my own'). I find myself extremely tired these days, and feeling mostly like I'm just "going through the motions" of everyday existence. In other words, not a lot of overwhelming joy. The news is all bad, and depresses me to read or listen to....like others, I am genuinely concerned about our national financial crisis, and truly believe that one day it could all come to a screeching halt (I am referring to the ADAP system, Medicare, etc). Once again, it's February and I am in the donut hole. I'll be in it the rest of the year.
I used to have a "back-up" plan, if things got to be too much to handle...I'm sure some of y'all did too. I had all kinds of pills. My personal pharmacy has dwindled, and all that stuff was way outdated. So I don't really have a "Plan B". Stopping HIV meds is something I would not like to try, because I know what would happen...I've been there, done that (pre-protease).
I feel much older than my actual age, most days. (of course my sense of humor is still in 6th grade). I know part of my problem, that I wrote about in a post in L.W. I think, is that I am on so much anti-depressant medication....60 mg of Paxil, 150 of Wellbutrin, with .5 Synthroid as an "adjunct", and at night, there's Trazodone and Clonazepam. To be honest, I don't know how I REALLY feel, emotionally. I feel like this house of cards could all come tumbling down one day. It's really best for me to stick to this forum, and Off Topic, because these newly diagnosed folks are looking for someone to give them a high five, and tell them life is good, and that they'll be o.k. For their sake, I hope they will. I'm just not the person that can give them what they need at this time. This little young twink was scheduled forthe appointment ahead of me at the psychiatrist's office yesterday; he blew in 10 mins late (I was already there, of course) and he stayed back there a good while (running me late and pissing me off - LOL) I was imagining in my head what he might be back there talking about.....how awful it is that he contracted HIV, and how could someone DO this to him ? I'm glad the psychiatrist was there for him, 'cause I just can't be "the listener" to that stuff anymore. I'm done with it. They seem p.o.'d that they have HIV (yes, and how DID that happen?) and p.o.'d to be inconvenienced to have to take a pill each day.....and they don't want to hear anything negative from us old folks. When a poster in the L.W. forum responded to me that he "had taken care of someone years ago who had AIDS, so therefore he felt he knew all about being a LTS" (I'm paraphrasing here) that was the final straw for me. How do you even respond to someone who thinks that? I had a hard time falling asleep the past two nights (even with my elephant knock-out meds) and as I think more about it, this was probably weighing heavily on my sub-conscious. I can't help but feel bad, as if I am no help or have no advice for these guys....but really, I should't be the one to feel bad. I just honestly never dreamed that we'd have to defend ourselves (as far as our opinions) as LTSers, or that we would have to be in pissing contests with newly diagnosed people who want to 'challenge us' or denigrate our experiences. As I told some friends in PMs, I think a lot of that is mis-directed anger.
I'm too tired to get really mad these days. LOL It takes too much effort. So back up on the treadmill I go, plodding ahead.....I'm rambling now, so I'll shut up. Anyway Mark, I feel you honey. I really do.
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Mark-
I suspect that you'll live to grow quite old, and knowing you, you'll pull it off in a rather disgraceful manner one hopes. ;) I know I hope to be able to do so. I wish I had kids and grandchildren so that I could scandalize them with my antics. Much like the grandfather in Little Miss Sunshine.
That said, I can well identify with the things that go through your (and our) head(s). I wonder what will happen when the time comes and I no longer am able to work, losing my benefits and unable to pay for the meds. I have decided not to worry too much about it, after all as an LTS of 23 years, not much, if anything scares me anymore. You tend to lose a lot of your fear after the fourth or fifth time a doctor tells you that you're going to die. At least , that's how it worked for me.
So here I am, gonna be 46 this summer, been Poz half of my freakin' life with no clue as to what the future holds for me. But here's the reality of this situation as I see it:
You (we) would probably have pretty much the exact same fears even if we were totally healthy. To be sure, there are some HIV-specific aspects, but by and large, I think a lot of this type of thinking is common to most people as the age. HIV might be causing us to go through some of these thought proccesses a bit earlier than most, but I think that for the most part these fears are the norm. Even the issue of meds is something most people will have to deal with. Being pozzies, we are tuned in to meds and the different aspects of them, earlier on in life, but overall, non-positive people will be facing much the same situation as we will. The just have the luxury of not knowing it yet, which may make it harder for them. We are already used to trying to figure out how to arrange for our needs. For the others, it will be something that they will have to learn later in life when it will be more difficult.
Perhaps a conversation or two with some people your age who are not HIV postive is in order to help with a different perspective.
I hope that this helps a bit, cold comfort though it may be. In the meantime, put a really big turbo on the Miata and go racing every chance you get. After all. if you're gonna age prematurely, it doesn't mean that you have to do it quietly.
See you in Seattle big boy.
CaptCarl
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Until reading the article on T-cell ageing posted earlier in the thread, I had not heard about anything about accelerated aging and HIV. I admit to only skimming the article, but I didn't read anything comparing acceleration caused by HIV to acceleration caused by anything else like stress, depression, smoking, Twinkies, etc., so I'm not really sure how to use this information. But I do know I'm not going to worry about it. I take care of my health in ways I see fit, and I have no control beyond that.
In 12-Step recovery I've learned to not fret about the things I have no control over, and I think the rate at which my T-cells age is probably one of those things I have no control over. I'm just gonna live as best I can.
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How is our Mark feeling today? If we were neighbors we could go shopping and go to the spa and have a mud bath and a massage....
I've never experienced any of the above, except shopping, but they say they help improve ones mood..so I'm open. :D
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Reflecting on aging:
I have lived the roller coaster of HIV since 1984. I was diagnosed with AIDS/Cancer in ´96 and to this day I feel happier than most people I know.
Yes, AIDS and Cancer gave me an different outlook on life. I take things as they come and never worry about things I can´t change, just go around them.
As my father once said: "As you grow older, find something you enjoy doing, have a passion for, something that doesn´t involve anyone´s approval." It works!
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Mark I read your piece and cheered out loud. That bought on a coughing fit where I banged the foot whose ankle snapped due to the osteoporosis in Jan this year and now remembered I am late for the drug that needs 2 hours before and after with no food but I loved your piece and wanted you to be in no doubt about that
love theyer
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And Hello Alan you hit some nail heads for me also Love to you all
theyer
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I always think that I am too young, to feel this old. But old I feel and I guess I just don't care. I'm living on borrowed time and while I do not welcome death, I think I'll be ready for a rest, when the time comes. Living with HIV is damn hard work and I am damn tired of being tired. I know you know what I mean and I see no reason to worry about things that may never happen, or over which I have no control. I have enough challenge in my life, without borrowing worries from the future.
Stephen and I have a pact, that if life gets too shitty, we go together and that works for me. I always thought I would fear death, but strangely, the closer I come to it, the more comforting I find the thought.
This sums up my feelings on the matter completely. Honestly, if I truly believed that I had 15 years left, I'd be overjoyed. And I'm only 51 (though I feel much, much older most of the time).
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I just turned 51 last summer waiting on 52 this summer. Frankly I don't really want to be an old fart and the drugs have already dammaged my body drugs and HIV That is prescrition drugs . I allways when I get over one thing something else pops up and know I have about 20 something things bothering my body. How am I going to cope with these when I get even older. Very depressing thought I must say.
The best thing is not to worry about your age and worry about the things at hand. I have two terrible things to deal with AIDS and Anti-Thrombin3 deficiency. The Aids drugs cause my blood thinner which I have been on for 30 something years, make my PT-INR go up and down this never happened when I was negative.
So already I know what it is like being old and I really don't like what I am feeling or seeing happen to myself. Most drugs I either are resistant to or I can't take them because of other reasons. I don't see a happy longivity. Jerry
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I've removed the various messages that derailed this important discussion, started by Mark. We're not expecting another intrusion.
Carry one.
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I've removed the various messages that derailed this important discussion, started by Mark. We're not expecting another intrusion.
Carry one.
Thank You Tim. This is too important a discussion to have it derailed.
Until reading this thread, I never really gave the subject of aging with HIV a thought. I hadn't realized the cumulative effects of several decades of infection as well as the meds, can have on the body. Thank you, Mark, for bringing this to my attention. I will be watching this discussion closely, and learning as much as I can from it.
CaptCarl
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Thank You Tim. This is too important a discussion to have it derailed.
Until reading this thread, I never really gave the subject of aging with HIV a thought. I hadn't realized the cumulative effects of several decades of infection as well as the meds, can have on the body. Thank you, Mark, for bringing this to my attention. I will be watching this discussion closely, and learning as much as I can from it.
CaptCarl
Here's what makes me a little sad about aging and having HIV/AIDS, I wish I wouldn't have gave up my career 12 yrs ago, due to being very sick, having 90-t-cells, and a VL of way over a million, and having this stomach condition, that I now understand that's not even AIDS-related,
It would have been nice to have this treated
back then, as I would have gotten better, and would still be able to continue my career, Carl, my advice to you is, if you are still able to work, and you enjoy doing so, do THIS as long as you can, your body, will tell you when it's time to STOP ;) it's a real bitch to be sick & old, I will tell you that much ;)