The club I did not want to join

[90szeitgeist]

Yet here I am, a full-fledged member.

I am a 28 year old bisexual from Denmark.

I tested positive a few months back(september), 5 weeks after what I believe to be the primary infection. CD4: 440 VL:16000. I lost 9 kilos in 3 weeks(seroconversion). After 2½ weeks on Stribild, CD4 was at 890 and VL undetectable. I have since regained 5 kilos(hopefully some of it muscle - never stopped going to the gym). As such, I am physically fine. Financially, I still have my great job and treatment is of course 'free' here.

My initial reaction to my status was reading all I could on the disease, treatment etc. Probably too much, to be honest. When I am positive about the future, I accept the situation and however many good years I will have left. When darkness resides in my soul, I fear the coming loneliness and also losing myself to neurocognitive disorders. Sand in the machinery is scary. The fear of somehow being lesser than what I could have been. Then I read what long-term survivors have been through and what people in poor countries are going through and I feel blessed as to when and where I am.

I have lost many things in recent years. My father committed suicide and I lost my 1 year old daughter to heart failure, all within the last 3 years. I think it brought me on a path of self-destruction with a rampant sex drive and drug (ab)use (although never intravenous drugs). I don't blame myself for getting into this situation - que sera sera. Depression and HIV seem to go hand-in-hand.  Whenever it rains, it pours.

I spend a lot of time in the gay community, HIV seems to be more accepted there(and I don't like to have sex without disclosing status - even though it is legal here). Plenty of men show willingness to date me, which feels nice, although it also feels like vultures surrounding the corpse of my heterosexual love life. When I have been undetectable for a year(easier to sell yourself as non-infectious), I will try to go into the straight world again, as I am pretty much heteroromantic and I realize that I'm just avoiding the pain of rejection.

I want to thank all of you. Whenever I feel anxiety, I read some posts here and feel better from all the warmth shown.

 

[Angel-Ronnie]

the club is not that bad at all, as long as you adhere to your meds you'll be fine. i don't think any of us here ever thought of joining the club, but we did. it didn't make us less of human finding the support and empowerment on this website.

hiv has no face, no colour, no race it is how we deal with it and how we find peace within ourselves.

it's all about educating yourself and to maintain a healthy lifestyle. we all did it so can you.

sorry to hear about your dx and your losses, welcome to the family.

[JonJon]

Hello and welcome 90szeitgeist,

Your post was interesting to me.  Although my numbers are much worse than yours  (I am so jealous of those who got to UD so fast!!!!  j/k...well, not really), I feel the same as you when you think about the future.  Most days I am feeling optimistic and that I can move forward thanks in part to a therapist I see regularly.  But at certain points of the day I still get depressed, thinking about what the future holds for me.  I think about my life span being shortened often.  But I know I cannot dwell on this too much.  Anyways, I have found this forum very helpful and read it often.  I think you will find the forum helpful as well.

John

[leatherman]

I think about my life span being shortened often.  But I know I cannot dwell on this too much.

I'm glad you're choosing to not dwell on that kind of out-dated thinking and incomplete information. For over a decade studies have shown that PLWH on successful treatment will live a "normal" lifespan. There are many Long Term Survivors here proving this! (I've lived with HIV for 31 yrs already myself and am planning for living another 30+ years). There are newer studies that are showing that PLWH with good access to healthcare and who remain on successful treatment live even healthier lives because of the extra health care monitoring we receive compared to people without HIV who rarely see a doctor.

I'm quoting a post of mine from this past summer where we talked about this issue because it contains links to more information

honestly that's 1997 thinking.....For over a decade, studies have been showing that people who get onto successful treatment and remain adherent should plan on living a normal lifespan

http://www.aidsmap.com/Many-patients-diagnosed-with-HIV-today-will-have-normal-life-expectancies-European-studies-find/page/1437877/
http://www.poz.com/articles/hiv_life_exectancy_survival_761_14989.shtml
http://www.medpagetoday.com/HIVAIDS/HIVAIDS/10250

this is just a sample, but really, for over a decade now we have known that if someone gets on meds (from nearly any point - early or late diagnosis) and remains adherent and UD, then their lifespan can be as long as someone who does not have HIV. The only people who die early from HIV these days are mostly people that are diagnosed just way too late OR people who have stopped taking their meds. What I'm trying to tell you is that you sure as heck better be planning on more than 2 years!

....If LTSs (who had less effective meds for a long time and more issues) have to worry about living to 85 then somebody like you sure better be thinking about living to 85. Thinking and hoping about living only 2 yrs is just short-sighted and not scientifically valid.

Your future holds whatever you work towards and your lifespan is not shortened by living with HIV (as long as you stay adherent to your meds, that is ). If you're dwelling on/ thinking often about your lifespan being shortened, then you're wasting emotional and mental energy on a non-problem and you're wasting time that you could have used to work towards whatever it is you want for your future.

[leatherman]

When I am positive about the future, I accept the situation and however many good years I will have left. When darkness resides in my soul, I fear the coming loneliness and also losing myself to neurocognitive disorders. Sand in the machinery is scary. The fear of somehow being lesser than what I could have been. Then I read what long-term survivors have been through and what people in poor countries are going through and I feel blessed as to when and where I am.

what I wrote to JonJon applies to you too, 90s!

"however many good years you will have left" - how many years until you hit your 80s? That's how many good years you can have - if you work on making them good. HIV doesn't have to make you "lesser than you could have been". Many people have used their diagnosis to change things for the better and end up more than what they would have been.

and don't feel bad for us LTSes. You'll find some of the most positive attitudes amongst us. How do you think we managed to live this long and through some of our experiences? By getting through the bad parts and moving on with the good parts - just like anyone with or without HIV should do.

[Tonny2]

         ojo        Hello 90s, welcome to the "club", where, as you mentioned, (poor countries), some of us, are V.I.P. members, because we are getting the best meds and healthcare there is, while our other members have to take what there are offerd, old meds, even AZT,, let's talk about old, (tho, now doctors know the right dose, bc its a good med), and poor health care services, so, as you 90s said, we are blessed to live where we live, its makes a HIV/AIDS dx easier, just a thought

90s and jon jon, it is ok to feel down and depresed after a dx, what we have only two choices, two ways, to take, either get adjusted to our new "NORMAL" and keep moving forward, keep dreaming and obtaining our goals, or play the vicyim ca's card, why me?, so, the sooner you make a decision the better your outcome....you guys talk about the future, who knows what the futures is going to be, did you know you were going to get hiv?, but one thing is for sure, that we the news meds, you will be around for a long time, as long as you take them as ordered...there are long timers like me, leatherman, Jeff, Wade, etc, etc, who are still around even when hiv was a death sentence, so, I just ask you guys, tthat, look forward, there are other who have it worse than us, that we will worry about the future problems, is there are, when they are here, we might be striken by lighting tomorrow, and we are worying about the future, it is your destiny to live with hiv, face it and keep enjoying life, because there is llife afteer a HIV dx, ..my take...best of luck...hugs                ojo

[CaveyUK]

The whole question or even concept of 'lifespan' is interesting.

I have lived an unhealthy lifestyle all my adult life. The wrong food, smoking, no exercise, risky sex, recreational drugs...the lot.

One thing I know my positive diagnosis will provide is motivation to change my lifestyle. Improve diet, quiet smoking, regulate sex and drugs, get regular exercise and so on. Allied to the increased frequency of clinic visits and monitoring of my vital functions, which would hopefully pick anything else up quickly, I have no doubt whatsoever that my 'lifespan' will be significantly greater than would have been had I never tested positive.

And anyway, I have never once compared myself to someone the same age as I am, and thought that because I smoke I have a shorter lifespan...or at least I've never dwelled on it (maybe I should). I've never stood next to a triathlete and thought 'I'm going to die before you'. Said this to my gf tonight and she said that the triathlete is probably taking years off their life by putting so much strain on their body...so there's always different ways to look at it.

Bottom line is...no one knows what their individual  'lifespan' is. Paying attention to diet, exercise and general wellbeing will ensure your time on this planet is maximised, and exactly the same thing is true regardless of whether you are hiv positive or negative.

Sure, people with HIV do have a slightly increased chance of certain cancers, but thats true of my mum who worked in some hideously asbestos-filled offices back in the 70s, or farmers who use weird and wonderful pesticides etc.

But to the original poster....none of us wanted to join this club, but now we are here - it's all about getting the right treatment which means we all live full and rewarding lives. The medications today are also significantly better than years ago and new treatments are being developed all the time. The future is still bright

[JosephP]

90szeitgeist, Quite an interesting post! None of us wanted to belong to this club but yet one way or another we are all here to give each other comfort and a ray of hope. Like you, I am a bisexual man and I got it, most likely, from a woman that I didn't know was positive and I believe she did know she was positive. Like you, I jumped into the hiv 'thing' upon dx and I read too much. So much that I was making myself sick!!! Treatment nowdays is way better than what it was, and we owe a debt of gratitude to those LTS who are still with us and to those that have departed. Their sacrifice has made medicines what they are now. I still get upset during the day and remind myself that 'life must go on'.. Keep a good raport with your medical team and adhere to your meds... Life will continue.. Shortened life span? Maybe, maybe not... Having to see the id doctor four times a year and being monitored constantly could actually prevent other illnesses that those HIV- may ignore. In summary, while the reason for the club sucks, the club itself is great! 

[harleymc]

There are lots of amazing people in this club. It's sizzling hot!