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HIV/AIDS Blog Central

The Long-Term Survivor Dilemma

By Nelson Vergel

February 14, 2011

"Nelson, what am I going to do?"

This sentence is part of a conversation that I seem to be having everywhere I go with my seminars -- one that manifests from a communal concern that many of us are sharing as we age as HIV long-term survivors.

A long-term survivor and activist friend of mine in San Francisco sat down with me for dinner and shared his fear of financial doom as he gets older with HIV. Like many of us, he left his career over 15 years ago due to HIV-related disability during years when we thought we had little ahead of us. As years went by, he became part of the large group of us who were committed full time to getting healthier again. Overcoming side effects, fatigue and other issues became a full-time job for years. Thoughts of replacing this full-time self-care job for a remunerated one never crossed our minds. Short-term goals were all we had for years.

With the advent of friendlier drugs and long-term virus suppression, many of us are confronted with a dilemma faced by few healthy people our age. Fear of financial doom in old age has replaced the fear of death that was part of our psyche for so many years.

Many people with HIV on permanent disability struggle by on less than $1,000 a month to pay all their bills. Others who get payments from private disability policies from their last job will lose them when they reach age 65. But who thought we were going to live to be 65 anyway!?

"Nelson, I am afraid to live to see my 80s and be a broke old man." "I would like to make money but am afraid of losing my disability and health care." "I am 57 and have a 16-year vacuum in my resume." "Who is going to hire me at this age, especially now in a recession, even if I tried to do what I used to before disability?" "If I did get a job, I am not sure if I can hold it with my frequent bouts of fatigue." "Is my fatigue related to not having a full-time job?" These sentences come from different mouths connected by a communal energy that is bursting to be expressed, but too ashamed to admit it.

As lucky survivors of a whole generation eroded by death, most of us are looking forward to a full life while searching for clarity and courage to regain financial security as we age with this disease.

In my PozHealth Yahoo group of over 3,200 people, most of us have lived with HIV for over 15 years and are aging with HIV. Some of us have only gotten to an undetectable viral load in the past three years. A few are still struggling with multidrug resistance. We often discuss obscure back- to-work programs that are scattered around the country. Some mention disability back-to-work programs like PASS or a trial work period to try to see if one can hold a job before getting out of disability. Most people's denial, confusion, inertia, fear of future health issues and/or just plain lack of trust in the system have been barriers to accessing these options. Some now stand on a cliff with a halting courage, poised to jump into the unknown.

Most of us have learned that a life purpose is key to health. Some of us have opted for reinventing ourselves without losing our benefits by being volunteer activists, writers, advisory board members at research sites, going back to school while strapped for cash, or doing cash-paying odd jobs for which many are overqualified. Most wonder how or if this work can lead to skill building or networking to ready us for the jump.

As we speak more about the science related to aging with HIV in conferences everywhere, the communal anxiety of surviving and aging with HIV is not addressed.

The social aspects of surviving HIV while living under national poverty income levels and with fragile medication access through financially troubled ADAP systems need to be addressed much like we address access to care and scientific research in HIV.

This is a great opportunity for large nonprofits that are now losing their funding. They may want to redirect their missions to empowering those of us who want to become part of a financially productive work force. Survivor training programs that coach people about their options while addressing their anxiety of the unknown are desperately needed.

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See Also
More on General Financial Planning

Reader Comments:

Comment by: Scottie (Tennessee) Tue., Sep. 22, 2015 at 9:44 am UTC
Having lived with HIV/AIDS now for 25 years, I can totally relate to this situation. Learning to navigate the waters of disability/fixed income, has become quite the struggle. Not just in a financial sense, but moreso, a mental sense. Feeling the urge to try and re- enter the work force, and run the risk of losing current benefits, such as medicare, and other social services, I have come to depend on for survival, in and of itself, adds more stress to the mix. While I am grateful for improved health, I find myself wondering what the future holds, as a now nearly 54 year old, who has been out of the workforce for 20 years. How, or where do I begin??
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Comment by: Bud Hardy (New York, NY) Thu., Sep. 19, 2013 at 9:34 am UTC
Times are a changing. As a person who has lived with HIV for 27 years, retired from my previous career 18 years ago; living off private disability insurance and Social Security since then.
Just this year my Infecticous Disease doctor has decided that he would no longer accept Medicare, or participate in as a provider under any health insurance plan. The cost of an appointment to see him has gone from approximately $20.00 a visit, to a staggering $325.00 per visit. I spend in excess of $500.00 per month in Medicare and private health insurance premiums; and neither plan works with my doctor. The private health insurance would kick in under the out of network providers once I have reached the $1,500.00 deductable; of course the $1,500.00 can only be made up of costs that the insurance company sees as normal and customary.
Have we got challenges living with HIV and affordinding treatment.
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Comment by: Robert M (kirksville,MO.) Wed., Sep. 18, 2013 at 5:35 pm UTC
Just good to hear someone else that feels this, 17 years and counting with good numbers but I've wondered the same thing. Looks like a broke old man and this isn't a very bright outlook either!
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Comment by: Ric (America City, KS) Mon., Jun. 27, 2011 at 10:54 am UTC
Great report and something that all of us between the ages of 60-65 should be worried about. I've been lucky and have disability from my last job and health insurance (I have a MBA) but it will run out in a few years. Then I will have my SS which will be below $2000 a month (because of deductions for the different parts of the health program)plus some money in savings and those wonderful 401 plans (haha, they might not even be worth anything in a few yrs). My money won't last until I'm 80! Without a drug insurance program I will be paying (at current pricing) $1500 per month for the one AIDS med I take daily! I also have 4 other meds that I take daily plus many supplements. I have been thinking of becoming a prist (there's a real shortage in my area, they have great benefits and they are not required to retire at 70 if they are doing a good job) or marrying a GayWomen who has health insurance...some of my dearest friends a real "L's". You may think I'm joking but I have several friends who have made this arrangement work for several yrs now. Of course I have several friends who have taken their lives recently because they couldn't deal with the stress of losing's a sad situation. I think our country isn't doing enough for us "seniors".
I do have several "off spring" from previous relationships and I could go live with them but I don't want to cramp their style by having a sick "old fool" (one thing worse then a fool is an old one) in the house. So I need to start planning my "golden" years which will be here before I know it. Thanks again for a great article.
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Comment by: Russell (Santiago, Chile) Mon., Apr. 11, 2011 at 6:36 pm UTC
Dear Nelson:I'm 56 y/o and 25 years living with HIV. I've been sick many times in the hospital due to Aids related problems. My pension is $100 (one hundred dollars) a month. Oviously I can't live with that. I pay mortgage: US$500, plus utilities, food, meds, doctors visits, med. exams, hospital, etc, etc, I only get the Therapy (Tenofovir, Atazanavir, Stocrin, and Norvir) from the government. I work part time with lots of difficulties,( I often get sick) to make the money I need to survive. I'm alone and and the friends I used to have, don't want to get involved with any of my problems. How much longer do I have to suffer? There will never be a cure for Aids !! I've been waiting too long and I'm about to give up.
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Comment by: River (Jersey) Thu., Mar. 3, 2011 at 10:44 am UTC
I too am a long time pos , 20 years. And have had to re-adjust my life and the being in the work force. I actually went off disability 3 times to go back to work full time. But each time after awhile for one reason or another I couldn't work past a year or two. And let me tell you , the folks at Social Security were great. They appreciate a person that trys to get back into the work force. I went through my trial work period and am now just working and staying within the guidelines. And for those that don't know you can make up to $980 gross per month . Add that to your SSD ( must be SSD ) and although it may not be what you were accustomed to, you learn just another of the many lessons that come with being pos, that is you live life simplier. And with a simplier life comes less stress. The hardest part is accepting this new challenge. And if you have always been a workaholic , well know that there is more to life than just work work work . Some of the best times come from the simplier times in life.
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Comment by: Joseph (Springfield, MO) Tue., Mar. 1, 2011 at 3:55 pm UTC
I fit into the same category as most who have posted to this topic (50 and a Long Term Survivor) and I can only share what goes on here in Missouri. Perhaps your state has similar options. But first of all, I dont know if this is a well known fact, but Social Security (SS) allows you to make up to $1,000 a month and remain on disability without affecting your benefits. Just make sure that you report this income to SS. It seems that SS rewards those who try to work part time and they offer an "extra help" option which covers the donut hole period and Part D insurance companies cover almost the entire cost of almost any med. I pay $1.10 for generic meds and $1.60 for name brand meds, such as Atripla. You must go to your local SS office to apply for this "extra help". I'm working part time at my local ASO as a peer advocate and the extra income has been a life saver. Also here in MO, we have something called the MO Health Insurance Pool (premiums may be paid by Medicaid), check to see if something similar is available in your state. On a federal level, there is a program called Pre-existing Condition Insurance Pool. It is expensive, but Ryan White funds may be available to pay the premiums. Each state should have their own web site for this program; the link to the MO site is
We do have options out there, its just a matter of finding the right person who knows all of the options. Dont give up if someone tells you there is nothing available, or they dont know, just keep asking someone else. As far as what employment options are available to people in our situation, a good place to start is with businesses that work with or support your local ASO or gay friendly businesses. Most jobs are acquired via nepotism, so start putting out the word that you are considering a part time job. Also, we all have our own talents, so self employment is an option. My e-mail is if I can help!
Good Luck!
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Comment by: B.A. (Northern Minn.) Sun., Feb. 27, 2011 at 10:18 am UTC
I'm Baaaack! I did want to clarify from my earlier post that it isn't impossible to return to employment after a significant's just going to have a few 'speed bumps'. After taking stock of your situation, and taking firm control of your own is possible to re-enter the workforce. Start small, live spartan. Impress your employer....going to work even when you're not exactly feeling up to it.... Establish an excellent track record. Return to technical education (short term, best return on investment), but don't take too many education loans! This small formula embarked upon in 1994 has proven effective for me, all these years later. (Life was a struggle before HIV, alright? ;) Keep looking ahead, and keep your head up......
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Comment by: Russell (Santiago, Chile) Sat., Feb. 26, 2011 at 9:50 pm UTC
I've been HIV + for 26 years (1985)on meds since 1990. I'm 56 y/o. I can get the HIV therapy from the State, but I need to pay all the rest (Doctor's visits, medical exams, X-rays, hospitalization, antibiotics, and all the medication I need). I live alone. I work part time as a teacher and I can afford all my expenses with great difficultties. However, I still have the optimism and energy to feel alive again.
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Comment by: Travis M ( Kansas City) Fri., Feb. 25, 2011 at 10:36 am UTC
I am 56 and work full time at what is my second rsing.....I have been positive for 5 years....sometimes it does seem like too much...having diarrhea at work...the fatigue but not working seems worse.....but I do feel grateful to have a job and be able to do it......
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Comment by: Don S. (Los Angeles) Fri., Feb. 25, 2011 at 1:28 am UTC
Thanks, Nelson, for including my pessimistic but real appeal among the comments to your timely blog. Somehow there's an odd discouragement yet comfort in knowing that so many of us are wrestling with similar issues and circumstances. Recent upheavals in the middle-east and the general consensus of political and economic pundits that a "double-dip" Recession seems all but inevitable have further complicated my choice of whether or not to risk my nearly-paid-for home by refinancing it for the sake of physical restoration. However, as a Gay man, the need to look one's best, to appear as well as possible, is an undeniable necessity for those of us who yearn for even the slightest degree of physical intimacy in the uncertain period of time before the final extinguishment of Existence. Would the future look more bleak from the deepest cesspool of America's class system, or in the arms of another man, perhaps no better off than myself, but sharing with me our mutual struggles? I just don't know. I've often thought I suffer from Traumatic Stress Disorder after living through the '80s and '90s and seeing every Gay man I knew die, usually miserably, always before his time. I haven't enough knowledge to identify the effect of this new dilemma, nor the hope or strength to combat it sanguinely. Perhaps the youngsters who succumbed early-on to this pandemic were spared more suffering than we, at the time, realized. Don.
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Comment by: David Knight (Myrtle Beach, SC) Thu., Feb. 24, 2011 at 6:42 pm UTC
I am very saddened by all of the stories I am reading here. I am a 56yo man living on SS disability. In order to maintain some quality of life I have tried to find a roommate so that I would have enought income to keep my home and be able to make the payments. I have a lovely and large 2,000sq.ft home which is plenty of room for two people. I live near the beach in a growing area. Straight and non-HIV+ people want nothing to do with someone that's HIV+. HIV+ people only want a roommate that is 18yo, very pretty and one that they can jump their bones every day. It's all about sex. Guys, this is not going to happen. If you don't want to be out on the street you better humble yourself, find someone that you're compatible with and give living together a try. Like the Golden Girls. If I had one roommate that would be all I needed to keep my budget in the BLACK each month. As it is I am slowly drowning and in a couple of years lose my home. I have also had the problem of finding someone that's HONEST.
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Replies to this comment:
Comment by: Susan (London England) Tue., Mar. 1, 2011 at 6:15 am UTC
Hello David,

I wanted to contact you to send my best wishes and hope that you have been successful in finding an honest compatible individual to share your home with.

Comment by: Frank (new york) Thu., Feb. 24, 2011 at 6:29 pm UTC
I recently applied for disability and was deniede , I've been hiv positive for 13 yrs but now the fatigue and depression has hit me . I'm 53 now .All these years of working . thank you for all the comments now I know I;m not alone
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Comment by: Milton (San Antonio, TX) Wed., Feb. 23, 2011 at 6:20 pm UTC
Thank God!, I finally found this site! I've beenpoz. for 23 yrs now and just recovered from a nasty bout with MAC, talking about being hit by a ton of bricks! Right now I'm struggling with "mortality anxiety" but lately I'm getting better..........keep in touch!
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Comment by: JH (Cleveland, TN) Tue., Feb. 22, 2011 at 12:37 pm UTC
I am glad to know I'm not the only one in the situation you describe. I had wondered often and deeply about it. Even if one could work, there are not the kind of opportunities in the country that once existed. And, with getting older, there are less and less.///Thank you for writing about this as it was a sort of cold comfort to me.
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Comment by: GlennM (Ft. Lauderdale, Fl.) Mon., Feb. 21, 2011 at 4:10 pm UTC
Me too to all of the above. I'm leaving disability though. Its a trap as far as I am concerned. Go back to school. Get training. Do something positive. Seek out the help you need. There are many, many resources available. Hit the Google and go for it. I may or may not be successful but I'm sure gonna try it. A Pozitive attitude will take you a long way.
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Comment by: anonymous (los angeles) Sat., Feb. 19, 2011 at 11:18 am UTC
Agree with Ron T. This is a wake-up call but nothing more. There is a generalized assumption here that we are all capable and willing to "make the jump." Encouraging non-profits to redirect their missions to us wanting to become "part of...a work force" is dangerous and threatening to many of us. We are not all frustrated gym heads dying to punch a clock in order to drive the right car. It's possible to live on very little and still fight the disease and have a life. There's little time or energy left for anything else.
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Comment by: B. A. (Northern MN) Fri., Feb. 18, 2011 at 3:11 pm UTC
I am 57 years old and was diagnosed in 1990. (21 years back ;) Although disability was an option at the time, I chose to go ahead and continue working. Since the 1990's I have retrained in 4 separate career fields (do-it-myself-version), and am happy I chose to continue. The work, although exhausting at times, has been good therapy. I now have a "desk" job, am self-employed, but still do projects on the side.
I'd recommend to those currently on disability to remain there, and hopefully be able to find a work-for-cash option on the side. The most important attribute regarding this approach is to maintain a low profile, as people tend to be "haters" and report to Soc.Sec. anonymously.
Being a realist, esp. in these economic times, it's gonna be hard to return to work with a huge gap in employment. If there was a govt. funded program for this, that would help.....but that's probably a long shot with budget cuts. My employment now is well below my "earnings potential", but I'm making the best of my situation. I live one step, one day at a time. Should I be fortunate enough to retire (Soc. Sec. is all I have), I'll downsize significantly and ride a bicycle for transportation, and live a very spartan existence.
My suggestion is get creative and make the most of your own situation. You are all you've got.
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Replies to this comment:
Comment by: D.M. (New York, NY) Sun., Feb. 20, 2011 at 11:56 am UTC
B.A. makes some good points. Others have said that for those receiving disability benefits, the only way to go is self-employment after reaching full retirement age. The money may be a lot less, but it will carry one through in the long haul of life. Being self-employed one never has to face being laid-off or fired.
Comment by: Mary G (St. Paul, MN) Thu., Feb. 24, 2011 at 2:18 pm UTC
B.A. - if you are on Program HH we may be able to help, to some degree. We have a return to work program, with a class soon in greater MN, that may be able to provide some assistance. Call your case manager (f you have one) or our program line (800-657-3761) and ask about EFL.
Comment by: XAvier (NYC) Tue., Mar. 1, 2011 at 11:55 am UTC
I have been Diagnostic a year ago, I have read alot bout this, And honestly this is the best article i found, thanks man, I like what you said you are all you've got" and we are the best!

Comment by: Don S. (Los Angeles) Fri., Feb. 18, 2011 at 2:16 am UTC
Dear Nelson-I approach you needing advice on aspects of HIV that seem insurmountable to me. I'm overwhelmed with fear that alleviation of HIV's killer effects, along with the certainty of governmental budgetary cut-backs will force me back to an alien workplace which I exited (expecting imminent death) 18 years ago. During those years, my line of work has transformed. To re-adapt to my profession as a paralegal would require a minimum of 2 to 3 years of education to familiarize myself with changes in the law, along with having early on dismissed from my mind such simple skills as using a law library, which dox are required for which circumstances, even which forms are used to file dox with whichever court has jurisdiction over a matter. Also, back in the early 90s a computer was a rarity in Century City, certainly not widely used by the larger, prestigious firms which had heavily invested in dedicated word processors. One simply spoke into a tape recorder, then revised drafts which the legal secretaries replaced on our desks. My wardrobe would have to be updated on Social Security income. It now consists of a smattering of ancient ties and a few designer sport coats and suits which hang on me like shrouds. Along with the anxiety and uncertainty attendant to these matters, I am currently applying for a loan secured by several hundred thousand dollars of equity which, after the Great Recession, my home maintains. I intend to use this sum for repair work, mostly for my vanished buttocks (I plan to visit Dr. Luis Casavantes in Tijuana) and also to replace my balls--once respectable limes, now shrunken to grapes and threatening to scurry back up the canal from which they dropped before birth. I can't decide if this investment in my body is defensible or a waste of cash which could be better used by AIDS orgs to which I've bequeathed my estate. All is in a muddle. I need feedback, but have no surviving friends. These circumstances overwhelm me. Please help. Thank You.
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Comment by: Larry (New York, NY) Thu., Feb. 17, 2011 at 11:37 pm UTC
Great posting. I am thus far fincially lucky but healthwise it has been "so so" for the most part. My career that I gave up at 35 required a lot of hours and caused much stress. Since my start of dealing with HIV, I have no vision of a long term future. Now I am 50 relly have to try some other otlets.
The question is how will I pay for my drugs? I take ~15 per day paid for through Medicare D.
Could I actually get insurance and earn enough to pay health insurnce premiums? I highly doubt it. The economy is very bad , I know of several professional whom are unempoyed for three years and they are worried.
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Comment by: D.M. (New York, NY) Fri., Feb. 18, 2011 at 1:35 pm UTC
Larry, you bring up a good point. There are others in the community who may or may not be HIV POZ, and have been unemployed for, as you wrote, three years or more. From what I read and hear in the media is that these people become "un-employable" as a result of having not worked for an extended period of time. I'd like to know how they survive and what I can learn from their similar situations. How can we find a vision to a long term future? I gave up on support groups years ago because the conversations were around a lot of whining, but no solid strategies for what to do with the future that remains.

Comment by: D.M. (New York, NY) Thu., Feb. 17, 2011 at 6:05 pm UTC
Thank you for writing this article. A serious discussion concerning HIV, aging, and financial insecurity is long overdue. I am 60 years old and am receiving private disability benefits. Although my monthly check provides most of my needs, there is little left over for savings. My income level is slightly too high to qualify for ADAP, so I bear the burden of paying over $6,000.00 a year for HIV drugs, in the Medicare Part D, drug program. As age 65 approaches and my disability benefits end, I am terrified to think of how I will survive. There is a 13 year gap in my resume and in this terrible economic recession even those with recent employment experience are unable to land a job. Ageism in the the workforce is a stark reality. I fear trying to seek part-time or even "off-the-books" employment since it may result in losing my disability benefits. The system has me locked into a problem of having to choose between finding financial independence with a part-time job (that could possibly lead to full-time employment)or completely losing my disability benefits that enable me to survive. The stress of my fears of aging with HIV have increased my problems with depression and fatigue. Loneliness forces me only deeper into clinical depression. Although I live in a large city, many of those my age have died of AIDS. I am aging without a cohort.
Mention of programs to employ people over age 65 and disabled due to HIV sounds like a great idea, but the conversation regarding all of this needs to start taking place, and very soon. Many of us are college educated and if employed could make significant contributions to our communities. But, GOOD programs need to exist that will override the multiple stigmas attached to living with HIV, having received disability benefits for a long time, and having lived to age 65 or older.
I'm grateful for the advances made in HIV drug research that have kept me alive, but the question that consumes me with fear is, "NOW WHAT ?"
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Comment by: Bobby (Boston) Thu., Feb. 17, 2011 at 5:46 pm UTC
You hit the nail on the head with this article. I am a 57 year old long term survivor. I fight exhaustion every day of my life. When I turn 65, all of my benefits will stop, and I will be on the street. I don't know where to turn. The way I feel now, I would rather be dead than old and broke.
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Comment by: MARY S (LOS ANGELES, CAL) Thu., Feb. 17, 2011 at 4:41 pm UTC
I say you are doing us all a great service.
Many thanks for the eloquent und prudent advice.

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Comment by: Ron T (Tampa) Thu., Feb. 17, 2011 at 3:02 pm UTC
I am a long term survivor,62, getting meds thru ADAP- however my neighbor is on ADAP waiting list for meds. He is 65 and had heart surgery last year successful. But because he has such a low medicare payment and as we all know all meds for HIV are still level 5 cost he has donut hole.Doesn't have money. Where is the conscience? Where are the cheep copies? No answere in this article. Only a wake up call
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Comment by: J W (Halifax, Nova Scotia) Thu., Feb. 17, 2011 at 1:50 pm UTC
This is a timely article for me. I am 47 healthy except for the various side effects I have. I could work but never full time and I am maxed out financially(deeply in debt). I work under the table in a couple of places but am really trying to hang on till my car is paid off in 2 years. I have 2 joint replacements so a car is a necessity but it`s killing me financially. I am afraid I will be caught and thrown off disability but I don`t know what else to do. I am bi-polar so the stress of it all is causing depression that I can`t fix because the cause of the stress never goes away. Suicide is a real option for me, I`ve thought of bankruptcy but I would lose my car and I wonder if living with chronic poverty is worth it. There are not many things to do with no money so...I feel trapped. I think about having a great time for 6 months and then going screw it but I am afraid that at some point the things that keep me from killing myself (friends, family ) won`t be enough to keep me from doing it when something like a tooth falls out and there is just no more money. thanks for the article it helps kinda.
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Comment by: Butch Thompson (Atlanta, GA) Thu., Feb. 17, 2011 at 1:19 pm UTC
Thank you for this article. As a person living with HIV for 24 years I have found myself on and off disability several times. A year ago I made the decision to return to work full time for an AIDS organization. I had been working part time for the agency and the decision to move forward into full time work was tough. I took advantage of the "back to work" period and today, over a year later, I am still working. My health has seen some issues, mostly from the stress of my work and at times being on my feet to much. I have worked with my doctor and my therapist during this transition and will continue to monitor my choices. The biggest problem I faced was having no one to talk to about the decision that has made the transition. However now I have the opportunity to share my experience. I agree with your assessment. There needs to be more focus on growing ( I don't like "growing older" lol) with HIV. As a 50 year old man I have much life left to live and much talent to offer this world. I know I will be working on presenting this issue locally and hope others will join across the country.

Butch Thompson
Assistant Director
AIDS Alliance for Faith and Health
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Comment by: Dante J (Long Island New York) Wed., Feb. 16, 2011 at 2:58 pm UTC
You hit the nail on the head and topping it off the 20 year relationship is over he is negative and I have a 16 yera odl daughter and my pennies He caused me bankruptcy I Allowed him to control m y finances trusting he would do right and he did not do right he screwed me - and I think about 65 and worry I should be eating dogfood! This who hting is a messss from how your treated to what they do not do for you whe they suppose to assist you! Any form of showing an emotion the ywant yo to get psychiatric assistance! Knuckleheads wake up WWIII is here I am living it 1988! And I have nobody to ask questions too they are dead. Thank God for your group! THANK GOD FOR YOUR GROUP! Peace Dante
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Comment by: GB (Portland) Wed., Feb. 16, 2011 at 1:55 pm UTC
Great article Nelson. After being HIV+ for 25 years, on meds since 1993, and now taking 6 HIV meds (including Fuzeon) for the past 5 years, I have much to be grateful for, but the AIDS fatigue and feelings of "what next?" relentlessly linger.
It's crazy, because part of me wants to give up and crawl in a hole, another part wants to go to Nepal and trek for a couple of weeks in order to feel alive again.
I don't know what the answer is...
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Replies to this comment:
Comment by: Pete (United Kingdom) Sun., Feb. 27, 2011 at 9:24 am UTC
GB, go to Nepal, or somewhere similar, and get your fill of excitement and adventure. But then come home and remember the reality. And then, after a while, get back out there and grab some more fantastic experiences.

For us HIVers it's all about balance. We can't pretend we are not in a tragic and precarious situation, but at the same time we have to make the most of any good possibilities that we have.

What I do is face the music, accept the facts, but two or three times a year I go off and LIVE. As the years pass I have clocked up quite a list of extraordinary adventures that I am pretty sure I would not have had if that wretched virus had not got hold of me.

Good luck.

Comment by: Michael L. (Sacramento) Tue., Feb. 15, 2011 at 8:32 pm UTC
if you just can take your med one day a a time
that all it takes
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Outsmarting HIV: A Survivor's Perspective

Nelson Vergel is a chemical engineer who has become a leading advocate for sports nutrition, supplementation and the promotion of wellness in the HIV-positive community since his positive diagnosis in 1986. He is also the author of "Testosterone: A Man's Guide" and co-author of the book "Built to Survive"; the founder of the nonprofit organizations Body Positive Wellness Clinic and Program for Wellness Restoration; the Nutrition and Exercise forum expert at; and a bilingual speaker on lipodystrophy, wasting, exercise, nutrition, testosterone replacement, metabolic disorders, HIV medication side effect management and HIV salvage therapy. Nelson also moderates PozHealth, one of the largest HIV health discussion listservs online.

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HIV Nutrition (and Proper Pooping) With Nelson Vergel, Food Detective: A Video Blog (January 4, 2011)

Hitting the Gym With HIV Fitness Stud Nelson Vergel: A Video Blog (January 24, 2011)

Second Bioplasty Congress in Mexico: PMMA for Facial and Buttock Lipoatrophy (December 9, 2010)

Updates From the 1st International Workshop on HIV & Aging (October 21, 2010)

This Month in HIV: 2009 Update on Body Shape Changes and HIV/AIDS (April 2009)

Nelson From Houston: Activist Since 1986 (May 2007)

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