POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: OutOfDarkness on July 04, 2008, 02:47:26 pm
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Hello everyone :)
Just wondering if you would mind posting how long you have been living/surviving with HIV/Aids. It has been awhile since I have felt optimistic, and I would really appreciate you sharing this info. I find it very inspirational and it does help me with my outlook since I have been communicating on this forum.
Peace!
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Hey OutofDarkness,
Living with HIV for Fifteen years,3 months....still counting.... . 1mar93-4jul08
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I tested HIV positve in 1989
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Hello everyone :)
Just wondering if you would mind posting how long you have been living/surviving with HIV/Aids. It has been awhile since I have felt optimistic, and I would really appreciate you sharing this info. I find it very inspirational and it does help me with my outlook since I have been communicating on this forum.
Peace!
Tested POZ+ back in 1987, I was 31yrs old, so that was 20yrs. ago THIS JUNE 08, but may have been POZ+ for a lot longer than 1987, my guess would be around 1982, somewhere close to that, when I was 25 yrs. old, ( but this cannot be proven) I've had an AIDS diagnoses for the last 10 yrs (1998) back then I was 41 yrs old, I'm now 51 soon to been 52 THIS NOV 08.........I'm still HERE, alive and WELL, I'm not going out of this world anytime soon, if I do, I can assure you that it will be under a lotta PROTEST, KICKING & SCREEMING to the very END ;D
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I'm not trying to negate your need for inspiration and I'm only speaking for myself, but sometimes I think folks put some kind of mystical quality to our survival. To me it is nothing more than sheer, dumb, luck to have stumbled across the finish line to life saving meds. To me I dishonor the thousands of people who didn't make it by suggesting that my survival has a special meaning. It doesn't. I did not do one thing different from those that died before me except live long for HAART.
There's plenty of inspiration out there and it's not measured in years.
edited for typo
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I tested positive in 1985 though likely seroconverted in 1981. I'll be 50 in 12 days, a miracle and a blessing :D
As far as inspiration goes, there are many inspiring stories here at the forums not just here at LTS.
I hope that you can find the inspiration you want, wherever you can !
Cheers
Paul
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I'm not trying to negate your need for inspiration and I'm only speaking for myself, but sometimes I think folks put some kind of mystical quality to our survival. To me it is nothing more than sheer, dumb, luck to have stumbled across the finish line to life saving meds. To me I dishonor the thousands of people who didn't make it by suggesting that my survival has a special meaning. It doesn't. I did not do one thing different from those that died before me except live long for HAART.
There's plenty of inspiration out there and it's not measured in years.
edited for typo
The request that I posted is just for my own personal issues and I hope no one takes offense to my inquiries. I have been living my life since I tested poz thinking that I was given a death sentence at the time, so I have many issues that I am trying to overcome and sometimes it helps to know there people that can live a long time with this disease. Just asking my own doctor has not helped with my concerns, as they can not give a prognosis because so much is still unknown, even with the life saving medications, because they have not been around long enough and who knows, really.
In no way do I feel that anything is "mystical" or unreal about long-term survivors, I believe we are all here for a reason and we all pass for a reason. And as long as were all here, might as well try to help each other out. I feel deep sorrow and a different kind of inspiration from those who have died and did not have the chance to be alive to see the day that we finally have some meds that we can somewhat or alltogether tolerate. Why are we so lucky?? I can only hope to live as long as some people have and it just helps knowing that it can actually happen for some people.
Peace.
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I'm not sure how long you've been positive and I'm sure your concerns about your survival are genuine. However, this forum is about LTS for LTS and we ask people to respect that request.
I'm sure you'll get plenty of the type of response you're looking for and as I said in my original post, I'm only speaking for myself.
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Hi,
Became exposed to HIV, around this week in 1985. tested positive in October of 1985. Was never on medication until October of 2003. In 1999 My t-cells were in the mid 900 range, and viral load about the same.
I never had my t-cell count/viral load checked again, until unfortunately I had an aids diagnoses in 2003, at which time, my t-cells were at 16, percentage around 4% and a viral load over 500,000. Make sure, to continue with those check-ups and bloodtests.
Ray
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Outofdarkness, I was diagnosed HIV+ in 1989, AIDS in 1994. So, for some unknown reason, I'm still around.
I don't know how long you've been HIV+, but I'm thinking it's pretty recent. I understand you wanting to get some inspiration from us LTS, but if you post in Living With, there are other people who have good stories. Good luck to you.
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Outofdarkness, I was diagnosed HIV+ in 1989, AIDS in 1994. So, for some unknown reason, I'm still around.
I don't know how long you've been HIV+, but I'm thinking it's pretty recent. I understand you wanting to get some inspiration from us LTS, but if you post in Living With, there are other people who have good stories. Good luck to you.
What do you consider LTS?
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Thank you to those who have responded without judgement, it is appreciated. :)
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There has been some discussion/threads here about who is or what is an LTS.
You might find these useful.
http://forums.poz.com/index.php?topic=20519.0
http://forums.poz.com/index.php?topic=11342.0
As Betty Says, you might find some inspiring stories at Living With or perhaps start a thread there seeking inspiring stories and include a bit about yourself. Just a suggestion.
You might want to look at a web site called The Body.com
The have several sections with inspiring stories of folks with HIV/AIDS.
I'm glad to see you reaching out. I hope you find the hope, support and inspiration you're looking for :D
In Peace
Paul
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Thank you Paul -
Should someone introduce themselves for each individual subject?
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Thank you Paul -
Should someone introduce themselves for each individual subject?
I don't believe Paul was saying to give a complete introduction every time you start a thread. If you've never posted in the LTS forum before, we usually appreciate folks introducing themselves and telling us how long they've been diagnosed.
I think what Paul meant was, if you're going to do a thread on like "inspirational stories," you might want to include why you would like them. At least that's what I'm assuming he meant. I could very well be wrong.
I wasn't judging you; please don't take it as that. I don't believe Dachs was either. We're a little defensive about our LTS "group." We do ask that people respect our "space" as far as starting threads and posting. Of course, anyone can read the threads.
Good luck. :)
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I tested HIV positive in 1992 diagnosed with AIDS in 1994. Likely infected in 1991.
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Funny thou shouldst ask (been watching way to many programs on the revolution today) but as of this month, it will be 23 years since I tested positive.
I tested positive in July 1985, but I don't remember the exact date. I do remember getting drunk.
My first doc thought I was infected in the spring of 1980, for a lot of reasons I won't go into at this point.
Hang in there OoD. It is very possible for you to live a normal life span if you take good care of yourself. There are no guarantees, but, as I said, it is entirely possible.
HUGS,
Mark
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Hi Out~
I tested poz on 12/22/93, so about 14-1/2 yrs for me. I prob seroconverted in 1992, no sooner.
You may be interested in reading our stories in the thread "Introduce Yourself" also in the LTS threads here. I am Reply #93. :)
http://forums.poz.com/index.php?topic=11342.0
~ Cindy in Maryland
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Hi Out...........I have been dianosed Poz for 23 years, not sure how long before that, that I was infected I think at least 2 - 3 years. Still healthy and going strong at 60 viral load undectetable and CD4's bounce around at 475 to 650
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Hey Betty
Thanks for the clarification on what I was attempting to say :D In my hurry to respond as I was headed out the door for a 4th of July barbecue, my words got a little muddied.
Cheers
Paul
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I have been living my life since I tested poz thinking that I was given a death sentence at the time, so I have many issues that I am trying to overcome and sometimes it helps to know there people that can live a long time with this disease. Just asking my own doctor has not helped with my concerns, as they can not give a prognosis because so much is still unknown, even with the life saving medications, because they have not been around long enough and who knows, really.
Have you considered addressing these obsessive death thoughts with one-on-one therapy sessions? Your HIV doctor should be able to give you a referral. Your HIV doctor is there to look at your lab work, etc. -- not deal with mental issues, and don't take offense at my suggestion. Something like 60% of HIV patients need mental health assistance, but probably only half of that figure actually actively seek it out, and even less on a regular basis.
I've noted that in your profile you live in the northeast (though you don't say where specifically) but that you've been diagnosed for 8 years and have had a difficult time locating support and services. Could you please perhaps elaborate on these difficulties in this thread and perhaps that might result in some worthy suggestions. You stated you've seen a therapist, but it seems by reading between the lines that it wasn't on a consistent basis.
Obsession with death can lead to chronic anxiety issues for HIV patients and speaking from experience such thought patterns, while treatable with benzodiazepines that is only an appropriate short-term solution, and for longer term results you need to avail yourself of consistent cognitive behavioral therapy sessions.
Frankly asking others how long they've survived is a false approach -- you could also ask how many LTS's have croaked in that same period. It's a futile exercise. Best to simply focus on what's going on in your head and/or if you're simply inventing worries where really there should be none, or at least very few.
I'd be happy to describe my fabulous lab numbers, my years of surviving HIV, and all of the atrocious things that also happened to me during that period -- but I doubt it would be a lot of help for you at this point in time. I'm sure you'd find it interesting, but I think it would just negate what needs you seem to be having right now.
Best of luck though, and I hope you can talk more about what your experiences have been with this "death" issue and resulting therapy you've sought in the past.
David
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Diagnosed with HIV in 1984, LTNP for 21 years have had AIDS diagnoses the last 3 years so a total of 24 years.
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Infected 1983
Diagnosed July 1987 = 25 years, but 21 officially.
Full blown AIDS diagnose 1995
Stable now.
Undetectable since 1996. CD4 count 750.
Good luck
Hermie
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While the initial voyeuristic bent of the thread bugged me, I'll add in.
Infected Labor Day weekend 1982 (frozen CSF from a year later had bugs in it)
Months of seroconversion illness pursued by docs as mono, Epstein-Barr and other conditions
....denial is a treatment option!
+ ELISA 12/94 unknown to me at the time, due to a surgeon cutting himself during brain surgery
+ ELISA known to me 5/98 when Dx with hep A
went off meds for study 01 Oct 2005
I can ascribe my longevity only to freaky genes, chance, and the wisdom of those who have gone before me.
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Diagnosed June 97
Meds June 97
Undetectable, CD4 around 1500 46%
Though it s been a long time I personally dont consider myself a
LTS, but it's debatable.
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Tested for the bug in 1983, reinfected too many times to remember :o , full blown aids 2001 and started on meds. Doing good except for nagging neuropathy.
1983 - 2008 = 25 years/half my life "living" with the AIDS Virus, excellent healthcare, AARP Medicare RX takes care of the meds, my home and vehicle paid for, Life is good... 8)
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While the initial voyeuristic bent of the thread bugged me, I'll add in.
Voyeuristic? Not at all. Just trying to figure out if there is a good possibility that I will be around for awhile. Thank you for replying, I didn't mean to make people feel uncomfortable about this, really. I just thought it would be easier to ask and didn't have the time really to take a tally. I figured most people give out this general bit of info. anyway.
Thank you to all of you who have replied so far. You have helped me and I appreciate that, I think it's great that you all can share in this one thread with a newbie. :) Peace.
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While the initial voyeuristic bent of the thread bugged me, I'll add in.
Voyeuristic? Not at all. Just trying to figure out if there is a good possibility that I will be around for awhile. Thank you for replying, I didn't mean to make people feel uncomfortable about this, really. I just thought it would be easier to ask and didn't have the time really to take a tally. I figured most people give out this general bit of info. anyway.
Thank you to all of you who have replied so far. You have helped me and I appreciate that, I think it's great that you all can share in this one thread with a newbie. :) Peace.
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I can't even post right, sorry about the duplicate and my response being in quotation format :-[
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I tested positive in 93' when I was 23 years old, diagnosed with AIDS in 2003, and have been on Reyataz and Combivir since. Currently I'm undetectable.
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It's good to hear so many of you doing so well. Hang in there!
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:)To all who have helped me out by replying thanks so much. :-*
I never could really get peace of mind with this disease and not knowing how long I have. Your replies have helped me out tremendously, making me feel at ease about mortality and the fact that it's going to happen when it was meant to happen and I really have no control over it. Although I would tell myself this, I think I just needed to see some flat out black and white proof. Over the past few weeks I have had to check myself and my own attitudes and how some ways that I think need to change. I am even feeling more confident enough to begin to think of how I will speak to my kids about this. I actually want to have this discussion with them, they are old enough to understand if I can explain it to them simply and factually and do it in a way that does not leave them worried for my life. I will be spending my days this summer coming up with a way to do this and going to a new support group that I attended this week, and also by chatting with you all now and again.
This has not been an easy post and I apologize to anyone who became offended, I now realize that I could have gone about it differently. I just saw an icon to use for polling, which I should have used.
Peace to all of you.
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Hello all
As an answer to how long have some of us been living with Hiv/Aids? I am a 60 yr old married woman and have been living ithe aids as far as i know now over 21 yrs along with HepC. Well my HepC has been gone now Thank God for over 8 yrs now! I have been married for 15yrs but we have been together now all together 21 yrs that's why i say ive had it over 21 yrs because my husband is negotive in both diseases! I obviously got it b4 we even met.How i dont know 4 sure.i found out about 2 years after we were married. I had no symptoms til then and didnt even know what hiv/aids was plus when we went ot get married i thought we were suppose to get blood tests but we didnt have to i was going to but my husband said we didnt have to!So who would of though!lm pretty healthy and working.Have been working for a long time!l work 6 hrs a day at 5 days a week and i luv it.I also have Neuropathy/asthma/bronchitus.But the asthma/bronchtus is no bother any more since i quit smokeing a lil over 8 yrs ago.So this is a little of my story.Please feel free to e-mail me at anytime i always answer my mail.And God Bless and Take care to all. Love carol
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Hi Carol,
I just wanted to welcome you to the forums.
Very inspiring story. Life is very strange. You have certainly shown that in your marriage.
Glad that you have survived HepC, ashtma and bronchitis. Sorry about the Neuropathy. I share that with you.
Congrats on 8 years of no smoking. I don't smoke, but there are several here who do and are trying yo quit.
Looking forward to hearing more of your story of surviving 21 years of being positive. Have you ever taken any medications for HIV?
welcome again,
ronald
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Hi Carol....I have been + for 23 years now, no aids related illnesses thank goodness. My CD4 is around 5 to 600, and viral load is undetectable, I have been on meds since '95, guess I am just one of the lucky ones. I am glad you have a life partner....that is the only thing missing in my life. I am 60 and been alone for all of my + days except for a three month dating scene about 3 years ago. He said it didn't matter, but in the end it did. Oh well I have many other blessings so it is best not to regret what can't be changed. Wishing you good health and many many happy years to come.
Hugzzzzzzzzzzzzzzzzz
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Poz here 23+ years and 61 years old and to be honest I wish I could die. I am having non HIV related neuromuscual spinal problems due to chronic pinched nerve that doctors ifnored untiil my legs watered to almost nothing kept saying it was HIV, 7 years in azt adn zerit also did a lot of nerve damager which doctors deny.
My condition worsened a lot duriing the past 3 months, Iused ot have 23" thighs and 16" calves form decades of long distance cycling and hiking, not left calf is 10" and righy is 13" and thights are 18" I am in constant pain legs and feet feel like they are being crushed in a vice. wait months to see one neurologist after another who pulls a blank, had back surgery 2 years ago improved slightly but now worse than ever. They're pretty much preparing me for life without legs, when you're 61 and poz you get kicked to the curb
I have no living family and no friends for support, plus on disabiliity between ssdi and private insurance make over the limit for any sort of aids plus have money in money markets which i was planning in using for retirement
Life is hell today
Ray
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Actually tested in 91 after finishing grad school. I was getting rashes and problems due to stress so it was no surprise, especially since most of my friends and ex partner were all dying in mid-late 80s.. I made it till 95 when the cocktails came out.
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Hi Graywolf............Sorry to hear you are having such a bad day, I sure hope tomorrow is better for you. We have a program at our local ASO where you can get hooked up with a buddy. Is there anything like that in your area? I have been a buddy to 3 others so far and I find I get as much from being their buddy as they get from me as a volunteer. Life stinks sometimes and we as LTS's can at times feel very left out and ignored. Anytime you want to chat just send me an email. Take care and big Hugzzzzzzzzzzzz to you
Dennis
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I tested poz in 88 but pretty sure i became poz in 87, was sick in 97 with only 29 tcells and vload over 20,000. I started meds. then. I am doing great with the hiv. my tcells count is about 700 and vload is undetectable.I think the reason i am still alive is because i am just too stuborn to give in to it. Now if i could just stop getting older and having the medical problems related to age i would be feeling really good. I have COPD, and had full knee replacement on my right knee this last Jan. I seldom think about being poz and i think its because of all the age related health problems i am having. Oh to be young again. lol, Oh well, there are some advantages of being old, i just don't know any right now. lol. No really i have found if you have a possitive attitude about live in general and only try to live one day at a time and not let the little things get to you, then life is better. Plus a little green once in awhile doesn't hurt either.
Wendy
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Oh to be young again. lol, Oh well, there are some advantages of being old, i just don't know any right now. lol. No really i have found if you have a possitive attitude about live in general and only try to live one day at a time and not let the little things get to you, then life is better. Plus a little green once in awhile doesn't hurt either.
Wendy
Wendy...I like the way you think about being HIV+ ..........you took the words right-outta-my-mouth ;D
and I just wanted to say THANK YOU!!!
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Hello Out,
My name is Joe and I have been poz for 24 years. I am also a parent and while I applaud your wanting to tell your children, please wait and consult a professional for guidance. I became poz when Kate was 3 and we worked with a child psycologist to devise a plan that met her needs and not ours. I can tell you that what matters most is your reassurance that you love them, they had nothing to do with your infection and your promise (and commitment) to always tell them the truth.
Trust me, your children already know that something is amiss, and they will look to you for guidance on how to react to your diagnosis. I am not trying to scare you, rather make you aware of some of the experiences we had with Kate. In the end, it all worked great and Kate spent years going to my ASO and doing community work. Once she understood the situation and knew she could ask questions, and get honest answers, her fears appeared to be minimal.
If you are newly diagnosed, take a deep breath and try to slow down. What you are experiencing is perfectly normal and it will take time to adjust. For now, take it one day at a time, be kind to yourself and your family and enjoy what you have, as all the other can wait. Life is not a race and should never be lived in fear, so cut yourself some slack, do something nice for yourself and recenter yourself on the present, rather than questioning your future.
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21 years, 7 months and going strong. I was diagnosed at the age of 22 in 1987 and was sure I'd be dead within 2 years. Wow, was I ever wrong! Started meds around year 9 while my cd4 was hovering in the 400s, and thanks to finding the right combo of meds, I now have a cd4 that hangs around between 1000-1100. Don't despair... If you stay on top of your treatment, religiously take your meds, stay involved with other HIV+ people (either in person or thru the web), you can have a happy, healthy and fulfilling life!
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yes I agree farb, damn but it would be good to share life with someone though lol, not had a boyfriend since I was diagnosed
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Positive since 1990, Cd4 count was 30 when diagnosed. That was a life time ago. After many pills swallowed, at deaths door knocking, I'm still strong and going. VL undetectable, Cd4 500 give or take a few, work and live life full time. No time for Living with HIV. HIV lives with me. :D
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I always strongly believed that I would survive.... and that is what connects me to a lot of other LTS.
Although it is no guarantee for a long life I think it is absolutely conditional for survival to have a positive look on your survival chances.
Stay strong and love yourself.
Hermie
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Out started this thread in July, and hasn't bothered to chime in since that month. Have we decided that this is still a valid thread or question?
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Out started this thread in July, and hasn't bothered to chime in since that month. Have we decided that this is still a valid thread or question?
good question. I say let it fade away
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Hi All,
My name is Miro. This is my first post. Nice to see you. Now I live in the UK but I was born and used to live in Poland.
Diagnosed Jun 1991 HIV + HEP C
Meds 2000 (CD4 500 VL ?). Now: Reyataz+Kivexa+Norvir+Tenofovir
Cure HEP C in 2002
CD4 around 1100
VL Undetectable sometimes around 100,
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Out started this thread in July, and hasn't bothered to chime in since that month. Have we decided that this is still a valid thread or question?
Well I have noticed that there still are a few that join so I would say for their sake just to leave it as is. It is not what I expected or waas looking for when I joined but I still check in to see what is happening and to make the odd comment
Dennis
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Hello everyone :)
Just wondering if you would mind posting how long you have been living/surviving with HIV/Aids. It has been awhile since I have felt optimistic, and I would really appreciate you sharing this info. I find it very inspirational and it does help me with my outlook since I have been communicating on this forum.
Peace!
hey I just found out I was postive in april but the doctors say I have been postive for about 18years or so. showing how low my count was and how messed up I was when I went into er. At this present moment when I wake up each morning I thank god that I woke up. Been feeling really bad hope these feelings will go away someday. LIFES GOOD!!!!!!!!!!!!!!!!!!!!!!!
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Uh, how exactly does one definitively determine that they were infected 18 years ago?
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Hi Bigrob, glad to see you made contact. I felt the same way in the begining but 23 years later I am still here and as healthy as I was when diagnosed!!!!!
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hey I just found out I was postive in april but the doctors say I have been postive for about 18years or so.
I would like to know how this is when you tested negative not too long ago.
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This past summer makes it 20 years for me. I was told that there was a good chance I was infected 20 years ago this month, but the docs said to wait for 6 months to be sure, so I was diagnosed in January of '89. I know who I was infected by, though I can't remember the exact date or anything, nor do I care about it. It was sometime in late July through the middle of August. It was right around my birthday. Aaaaahhhhhh HIV, the Gift that Keeps On Giving ;)
CaptCarl
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Uh, how exactly does one definitively determine that they were infected 18 years ago?
Good afternoon everyone! Well for me when i first got tested it was about 15yrs ago and t-cells were 56. and i tested as having Aids not hiv!But i have had it for well over 22 yrs.How could i be sure of that?Well because me and my husband have been together for 22 yrs now and he has been tested from day 1 and he is Negative thank God! So i did not get it from him i obviously got it b4 we met!You can most likely tell how long you've had it by knowing that you have only been with that 1 partner for that long and never cheated i guess! Oh i also tested HepC and my husband is negative in that also.And thank God it has now been over 8 yrs since my Hepc VL has been Undetected and my Liver Enzymes have also been Normal!And boy am i glad cause my Lil old legs were getting so sore and tired of over 500 Interferon Injections for almost 3 1/2 yrs:( I am very healthy and work 5 days aweek standing on my feet for 6 hrs a day even with Neuropathy!My t-cells today are over 700 and my Hiv VL Has been Undetected for over 10 yr's Thank God again! Ok enough out of me LOL OH! And finding out how i got it or from Who Has been the fartherest thing from my mind! Living and Surviving with it is! God Bless and Have a Great day! Love Carol (AKA) Granny715
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Been living with HIV since 1989 - 19 years and counting - not progressed to AIDS yet. Still no opportunistic illnesses just close to death a few times due to side effects but the meds. a positive attitude and a passion for life has kept me going for all these years.
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Hi and welcome kajnjewel, glad to hear you are doing so well!!!! The positive upbeat attitude really is paramount to our good health
Hugzzzzzzzzzz Chip
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Hi Jewel,
Welcome. It's always good to know other woman LTS. Please consider joining us ladies in the "positive women" part of the forums. There's a particular thread entitled "Ladies Thread" where we women talk about our daily lives, struggles, little victories, and support each other. It's a great place and we would love to have you with us.
Luv,
Betty
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i tested poz in 1987, so 21 years, 3 months. i don't have any big secret to survival; i eat well, never miss a dose and try to follow my doctors orders.
i have my share of issues though, i just deal with them as they come along. i don't dwell on what ifs or the past. it can not be changed.
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Thanks for the welcome everyone. It is nice to have a home again.