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Main Forums => Living With HIV => Topic started by: Etay1207 on July 02, 2010, 12:17:17 am

Title: AIDS. My one year anniversary.
Post by: Etay1207 on July 02, 2010, 12:17:17 am
Well, this month marks a year of my AIDS diagnosis. Aside from being told that without meds I would be dead within 2 years, this has been a pretty good year for me. I did a little traveling, fell in love once again, I'm doing well on my job and reaching financial goals I set for myself, my retirement is healthy, my faith is strong, so many things are going well in my life that I don't even see my diagnosis as a "bad" thing. 
     I haven't made a video since Feb simply because I haven't had bloodwork since then. Because of insurance issues I probably won't get bloodwork til Jan when my HSA renews. There has been no health issues to report. As some of you know I had a cardiac scare in Jan. I was having chestpains and had tests done by a cardiologist (this is why I have no available funds in my HSA). Heart disease is common in my family so we take chestpains seriously. It turned out to be trapped gas. Apparently driving for 11 hours a day and not eating fruits and vegetables is not good for your digestive system. I exercise more regularly now and make it a point to eat fresh fruits and veggies.  
      As I mentioned I fell in love with a wonderful man who is also HIV+. He adopted two boys. So I'm a stepdaddy now :)  My partner and one of the boys are on HAART and doing well.  At first my partner was very concerned with me not being on meds and it was pretty evident one morning when I woke up not feeling well. I had a slight fever of 100 degrees. I dragged myself to work and ended up working a full 14 hour shift that day. I was miserable, but I got through it. The next day I was feeling much better and back to 98.6 degrees. 
    My wisdom teeth decided to grow in over the past month. At 29 I guess I'm a late bloomer. One of them gave me a little problem and got infected. Instead of rushing to the dentist I decided to monitor it and see what it would do on it's own.  While my tooth was infected my tonsils also got infected and my lymph nodes on that side of my neck swelled. The infection took about two weeks to clear up. But that was a painful two weeks! It hurt to eat, it hurt to talk, it just hurt! 
     The HIV wellness ministry at my church that I moderate is doing well. We now have HIV+ and well as HIV- persons who come together once a month and talk about issues faced by the gay and poz communities. We walked in the NYC AIDS walk this year. It was my first year walking in it. All I have to say is that it was LONG! My legs hurt for two days after that.  But we got alot of support and raised some money and feel good about participating. 
    I was thinking of making a video and talking about what it's like to live a year with AIDS. I don't know. There are many others who have had an AIDS diagnosis many years before me- decades even.  I think they would be more qualified to speak on the subject.  I've met some wonderful people in the poz community. Some adore me and some hate and ignore me. It's all good. We all have our respective journeys and I respect points of views that are different than my own. Since I started studying and thinking for myself I've leaned that it's not worth trying to please people and you have to be comfortable with what you believe. I attend a Christian church, but I don't believe Jesus is God and is coming to save the day while banishing the heathens to Hell.  That makes me unpopular among Christian groups. I'm also a black man who's thought and reasoning processes causes me to lean more on the republican side. We all know that it's blashemy for a minority to not be democratic and worship Obama. 
     Forgive me for writing such a long post. I don't post often so a lot happens between postings. Thanks for reading and I wish you guys all the best. 
Title: Re: AIDS. My one year anniversary.
Post by: edfu on July 02, 2010, 04:21:25 am
How unbelievably lucky you have been so far....
Title: Re: AIDS. My one year anniversary.
Post by: WillyWump on July 02, 2010, 08:45:40 am
Congrats Etay!

-Oppressed and Depresssed Will
Title: Re: AIDS. My one year anniversary.
Post by: OneTampa on July 02, 2010, 10:41:30 am
Etay,

Boilerplate you certainly are not!

As someone who was diagnosed with ARC (AIDS Related Complex) back in 1985 and is here to tell the tale in 2010, I am proof that there is not only hope but real survival. And, there are many others like me.

Take care of yourself.

Best.
Title: Re: AIDS. My one year anniversary.
Post by: RevMC on July 02, 2010, 01:40:23 pm
I know I have not been active on the forums in a long time, read your post and had to respond.

I was given the same of possibly 2 years to live...that was 22 years ago.  Your positive attitude and outlook will keep you around for a long time.  Congrats on your new love, I too found love and we've been together for the past 13 years and doing  great.

You will have a lot of new first in your life.  May you be blessed with so many more that you forget the anniversary day and remember it a few days later.

Many blessings to you, your partner and your children  :)
Title: Re: AIDS. My one year anniversary.
Post by: Etay1207 on July 05, 2010, 11:20:44 am
Forgive me for taking so long to respond. Thank you all for your encouragement and well wishes.
Title: Re: AIDS. My one year anniversary.
Post by: leatherman on July 05, 2010, 11:42:10 am
I haven't made a video since Feb simply because I haven't had bloodwork since then.

 one morning when I woke up not feeling well. I had a slight fever of 100 degrees. I dragged myself to work and ended up working a full 14 hour shift that day. I was miserable, but I got through it.

Instead of rushing to the dentist I decided to monitor it and see what it would do on it's own.
Hey again Etay! ;D
Egads, man! You're still doing nothing to alleviate our fears here about you, are you? LOL ;D

We already know you ignore medical advice and don't take HIV meds ::) ; but now fevers and you don't go to the doctor but go into work, and dental infections and you decide to "see what it would do". Damn, man! :o  :D That's kinda irresponsible health care, don't you think?

At least the scary chest pains sent you to the doctor :D, otherwise I would suspect that one day someone might you find you keeled over and dead somewhere for just ignoring all your health problems. ;)

I would ask that you consider something though. Consider that all these health issues are related. Instead of going a year with "so many things going well in your life", consider that you've actually had 3-4 health problems that you didn't treat very well. Just something for you to think about. ;)

as usual, best wishes to you and may your amazing luck continue ;D
(cause it'll be an ugly sad day when your luck runs dry ;))
Title: Re: AIDS. My one year anniversary.
Post by: Etay1207 on July 05, 2010, 06:23:02 pm
Leatherman: I would have to disagree with you that I am irresponsible about my heathcare.  Quite the opposite is true.  I would also argue that taking medication to treat symptoms is not heathcare.  As I assume that is the way you would define healthcare.  Would you have wanted my cardiologist to prescribe me drugs instead of telling me the truth - that I needed more exercise and less fast food?
        You tell me that I have 3-4 health problems that I didn't treat well.  If I didn't treat them well, then why did they go away?  My tonsils were infected when my tooth was infected.  Why did the infection go away? Why did my tooth grow in?  You've never seen someone who is HIV- have an issue when a wisdom tooth is growing in? You've never seen an HIV- have a day where they weren't feeling 100%? Why would I be sick ONE DAY and assume that I'm dying of immune collapse?
        I am kinda getting offended here.  I feel as if you are insulting my intelligence.  My partner is a clinical scientist.  He is on HAART and loves it.  He told me that the pain in my tonsils is still there and I don't feel it because I have developed a tolerance to the pain.  That is to say that me, a college educated 30 year old, is too stupid to know when I'm feeling pain!   Not only that, but I'm dying of this horrible disease and I'm too stupid to know that I'm sick.  When someone is sick, you don't have to tell them.  They already know it! Because I don't take any medications or treatments doesn't mean that I don't take a VERY active role in my heatlh.  I do listen to my doctor, just as I read and learn from you guys here on sites like this one.  I am not opposed to the medical system or medications.  I have taken medications in the past.  I don't believe that it's my doctor's job to keep me heatlhy.  That's my job.  And it is also my job to ask her advice, do dilligent study, and make an informed decision as to how I will handle my HIV infection.
Title: Re: AIDS. My one year anniversary.
Post by: Ann on July 05, 2010, 08:45:25 pm
Etay, yes, you are being irresponsible where your health is concerned. You refuse to take life-saving meds. End of story and sadly, it will be the end of you too.

What the fuck is your problem anyway? There are people who died of this shit for the sole reason that they didn't have access to the meds you do. Why are you on this suicide mission?
Title: Re: AIDS. My one year anniversary.
Post by: Joe K on July 05, 2010, 10:12:56 pm
I am divided on how to respond to you. The 26 year AIDS survivor in me, wants to tell you what a mistake you are making by forgoing treatment and that eventually HIV will kill you. However, that same survivor recognizes that we each have the right to determine our own course of treatment, which includes not treating or medicating. I share your joy at the happiness you have found, I just hope your reluctance to treat your HIV disease, will not cause you to lose it all... including your life.
Title: Re: AIDS. My one year anniversary.
Post by: bocker3 on July 05, 2010, 10:19:37 pm
I would also argue that taking medication to treat symptoms is not heathcare. 

Etay,

Sorry mister but HAART is most certainly healthcare.  You don't take HAART to treat symptoms, you take it to suppress the virus.  If you suppress the virus you are not likely to have small things blow up into big things -- and big things, become big enough to KILLYOU.

You can say all you want that you are in charge of you health, but, you are wrong -- right now, the HIV is in charge of your health.  You can stomp you feet and say, "NO" all you want -- but just like a 2 year old who acts this way, you clearly do not know what is best for you.  I feel badly for you stepkids -- it's going to be very hard on them when you succumb to this virus -- or even if you just get so sick that you are forced to lift your head out of the sand.  At the end of the day, you are simply be selfish.  If you want to go down your chosen path -- go forth -- no one should tell you that you can't do it.  However, please stop trying to convince us (and yourself) that you are doing the right thing for you health.

Mike
Title: Re: AIDS. My one year anniversary.
Post by: leatherman on July 05, 2010, 11:00:09 pm
I am kinda getting offended here.  I feel as if you are insulting my intelligence.
I tried to put enough smiley faces to not get you too mad. However, your posts do seem to stir up a honest's nest, don't they? I've tried to chat politely with you, but sometimes your attitude about things is just too appalling. I feel that you are insulting the collective intelligence of the AM members when you bother to post here. It's really amazing how glib you are about your health and simply astounding that you still keep posting here when you clearly do not believe what this site is about, nor what the members here think/ agree upon. But what I am actually offended by is your refusal to treat your HIV and the glib way you believe you are amazingly immune from what HIV will do to you - when it killed so many friends and lovers of mine and others here.

Because I don't take any medications or treatments doesn't mean that I don't take a VERY active role in my heatlh.  I do listen to my doctor, just as I read and learn from you guys here on sites like this one.  I am not opposed to the medical system or medications.  I have taken medications in the past.
According to the story you told us in your previous thread, your "active" role was to do NOTHING
Quote
I dragged myself to work and ended up working a full 14 hour shift that day. I was miserable, but I got through it.
Quote
Instead of rushing to the dentist I decided to monitor it and see what it would do on it's own.
I'm very glad that fever didn't turn out to be a symptom of PCP or something else, and I'm sure glad that tooth didn't abcess and lead to some sort of sepsis. However, please be honest about these incidents. Doing NOTHING (no doctors, no meds, not even staying home to possibly not infect co-workers etc) was NOT an active role in your health care.

I am kinda getting offended here.  I feel as if you are insulting my intelligence.  My partner is a clinical scientist.  He is on HAART and loves it.  He told me that the pain in my tonsils is still there and I don't feel it because I have developed a tolerance to the pain.  That is to say that me, a college educated 30 year old, is too stupid to know when I'm feeling pain!
It actually sounds more like you are upset and more offended by your partner's comments - which sound similar to the things to that we have said to you here. Do you ever wonder when everyone seems to be thinking that your actions don't sound logical (you know you have HIV, you know your lab counts, you know the science of the meds and HIV - and yet you ignore modern medical treatments) that perhaps you are wrong about this? You're risking your life (not to mention the happiness of your partner and your children) by going against over 30 years of medical science.

Not only that, but I'm dying of this horrible disease and I'm too stupid to know that I'm sick.  When someone is sick, you don't have to tell them.  They already know it!
not true. Plenty of HIV+ people are going about their business today never knowing that they are even postive until they present into a hospital ER in a few weeks - hopefully surviving the PCP that ends up putting them into the hospital.

my late partner had non-Hodgkins lymphoma cancerous tumors growing inside him for several years without any real symptoms or reasons for him to get tested to find this out. By the time the mysterious fever and flu-like symptoms hit, he was in the hospital within two weeks - and then dead 69 days later.

Yes, I know it was a low blow to mention your family earlier; but I know the position you're putting them in. Because my own partner did not get tested or treated all those years, he left me behind when he died. I still desperately love him, and share part of the blame of NOT forcing him to get tested or to get treatment until it was too late. However, forgive me for saying this Jim, but the main responsiblity of fault lies with my partner for his death and for leaving me alone. Each day you go without treatment against the HIV in your body, is another day you take the responsibility of the risk you take in leaving your family behind.

The 26 year AIDS survivor in me, wants to tell you what a mistake you are making by forgoing treatment and that eventually HIV will kill you. However, that same survivor recognizes that we each have the right to determine our own course of treatment, which includes not treating or medicating.
How very true, Joe. However I would like to point out (mainly to the OP) that you are a 26-yr survivor because of the meds you have taken. Without meds, the possiblity is quite high that Etay won't be a survivor.
Title: Re: AIDS. My one year anniversary.
Post by: Joe K on July 06, 2010, 12:22:04 am
How very true, Joe. However I would like to point out (mainly to the OP) that you are a 26-yr survivor because of the meds you have taken. Without meds, the possiblity is quite high that Etay won't be a survivor.

Of course I am still alive because of my choice to medicate. That's why I said I was divided about Etay and his choices. He's been posting for a year and we have shared our thoughts on treatment and it has not changed his mind. So at what point, do you just stop trying? I wish him well, even though my gut tells me he is a dead man walking. I simply choose to spend my energies elsewhere, helping those who really need help.
Title: Re: AIDS. My one year anniversary.
Post by: mecch on July 06, 2010, 03:54:32 am
  I am kinda getting offended here.  I feel as if you are insulting my intelligence.  My partner is a clinical scientist.  He is on HAART and loves it.  He told me that the pain in my tonsils is still there and I don't feel it because I have developed a tolerance to the pain.  That is to say that me, a college educated 30 year old, is too stupid to know when I'm feeling pain!   Not only that, but I'm dying of this horrible disease and I'm too stupid to know that I'm sick.  When someone is sick, you don't have to tell them.  They already know it! Because I don't take any medications or treatments doesn't mean that I don't take a VERY active role in my heatlh.  I do listen to my doctor, just as I read and learn from you guys here on sites like this one.  I am not opposed to the medical system or medications.  I have taken medications in the past.  I don't believe that it's my doctor's job to keep me heatlhy.  That's my job.  And it is also my job to ask her advice, do dilligent study, and make an informed decision as to how I will handle my HIV infection.

Jesus. You come in  here with the good news you have a lover and a new family and then give us news that is so incomprehensible - that your clever bf also thinks you are on a deluded path.

With the "good news" about your great condition that we have dissected to show is a mirage.

All and all, I get the distinct feeling you are ego-centric and will cause many people a lot of pain from your own demise, and all so needlessly. 

I don't think you should be banned in these forums but I am glad that many AM members do this, in so many words - a public warning to all who read your threads -

ATTENTION - THIS IS A BULL HEAD

Title: Re: AIDS. My one year anniversary.
Post by: tommy246 on July 06, 2010, 07:43:29 am
We all feel well until we get sick
Title: Re: AIDS. My one year anniversary.
Post by: WillyWump on July 06, 2010, 10:03:04 am
Etay,
 
"I haven't made a video since Feb" ..."I was thinking of making a Video "

I see your dropping teasers on your videos... Before you link any of your videos again I thought I would refresh your memory regarding what happened last time. To wit.. http://forums.poz.com/index.php?topic=31260.msg382532#msg382532

I don't want to see you get banned as I think your situation will one day be used here as a good example of what can happen if you dismiss HAART, I want to see it through to the end. I hope you keep posting updates on yourself, both good and bad.

I embrace your tenacity and strong will, and I know that nothing anyone can say will make you take HAART.  While Im saddened to know that you are sick and fail to recognize it I try to see the good with the bad, the good is that one day we will have a valuable lesson to look back upon, that lesson being you.

-Will
Title: Re: AIDS. My one year anniversary.
Post by: skeebo1969 on July 06, 2010, 11:49:34 am
All and all, I get the distinct feeling you are ego-centric and will cause many people a lot of pain from your own demise, and all so needlessly. 

I agree, after seeing his videos and postings I've come to the conclusion that we have a good guy here making the wrong decisions for himself, it will be sad especially for those close to him to comprehend the "Why?". 
Title: Re: AIDS. My one year anniversary.
Post by: tommy246 on July 07, 2010, 03:36:42 pm
Having read some of your posts Etay you seem like a nice intelligent man thats why i cant understand you living in denial . Its not rocket science hiv destroys your immune system and without haart treatment eventually you get oportunistic illnesses and die it really is that simple. Your god wont save you your cd4 defences will .
I have a question for you , when you end up sick in hospital very shortly would you then start taking haart if its not to late?
Title: Re: AIDS. My one year anniversary.
Post by: tommy246 on July 13, 2010, 08:05:05 am
Etay never answered my question hope hes ok
Title: Re: AIDS. My one year anniversary.
Post by: skeebo1969 on July 13, 2010, 08:35:13 am
Etay never answered my question hope hes ok

I hear ya Tommy, it's always been this way though.  Etay's been around since posting this, I figured he likes to give us time to swallow his reality before responding.  Hell, at this point I wouldn't be surprised if he comes back telling us he's been fishing on a crab boat for the last few weeks in the Bering Sea while enduring 60 ft swells with an earache left unattended, which most likely was caused by subfreezing temperatures and went away on it's own during his bike ride back to Cali.