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Main Forums => Living With HIV => Topic started by: NY2011 on November 05, 2012, 12:34:10 am

Title: to hell and back: one year since the diagnosis, and doing well
Post by: NY2011 on November 05, 2012, 12:34:10 am
I guess I'm writing this mostly for people who are newly diagnosed, and for those who are trying to make sense of the news, and how it's impacting their life in the near-term. It's for those who don't understand how they could have failed themselves by taking their excellent health for granted, by screwing it all up by being so foolishly human.  For those who can't believe that the price for one bad decision is paid with your life and your health. For those of us who feel that it's such a heavy price to pay and it's just not fucking fair. 
   
I think about what I was going through a year ago, how the acute infection was really hitting me hard, and how I got pretty sick just two weeks after penetrating a guy I had met, unprotected, who didnt know he was infected. I had an initial fever of 104 F, and a rash on my body.  I was having awful night sweats, crazy dreams, and had no energy.  It was like the worst flu I ever had in my life.  I was talking to my friend about it, and the symptoms sounded suspicious to him, so he suggested that I visit his doctor and request a PCR exam.  It was the first time I've ever heard of that test.  So he arranged an emergency appointment, and I met with the doctor.  I was given a rapid HIV saliva test in the office, which was negative, but was told that the blood work is more indicative and would take a few days.  I spent those next few days begging God for this to be a bad case of syphillis.

Halloween Day 2011 - My appointment was at 1pm to meet with the doctor for the results of my blood work.  The office was empty.  As a gay guy living in NYC, I was no stranger to getting HIV test results, but something felt very tense about this visit. I felt the tension of being seconds away from the worst news of my life. The doctor asked me to come into the office. Closed the door. Looked right into my eyes and gave it to me straight; I'm HIV positive and that I'm going to be okay. Okay? WTF? I looked away, and heard "GAME OVER" in my head.  I started on meds that evening.  I was so embarrassed to go to the pharmacy and fill that prescription, but I found the courage to do it. 

Well, the weeks went on and I started to regain strength.  I wasn't 100% myself, but I had to get back to work, and begin picking up the pieces of my life.  Truth is, though my health began to improve, I had become extremely paranoid about germs and my well-being, and took extra precautions, obsessively, which meant leaving work early each day, taking full lunch hours, eating extremely healthy, taking lots of vitamins and washing my hands constantly.  The original med regimen was destroying my stomach, and several office employees commented about the bathroom after I used it.  I'm sure rumors began to swirl about me and this strange, distant, sick version of me. I was going for blood labs once per week. My liver enzymes were through the roof, and my cholesterol was climbing dangerously high.  In addition to my newly acquired health issues, I found out that I lost an important promotion at work that I had earned a few months earlier.  I was demoted, and the disease was now affecting my financial and professional life, as well as my health. 

Eventually, my doctor changed the drug regimen to Atripla, and within a week, my lab results and stomach issues began to improve substantially. I stopped feeling tired, and I felt stronger each day. I slept less and accomplished more. I was able to re-engage in social activities, and began showing my face again.  Spring was coming, and I signed up for several athletic things, and my ability to focus at work had returned.  Once I felt stronger, I realized that a formula for success for me is to eat healthy, take lots of vitamins, and be active.  To take calculated risks.  No more running outside barefoot without a jacket in the cold.  No more sketchy sushi places.  Less alcohol consumption in social situations.  A daily vitamin regimen. Exercise without pushing myself to unrealistic limits.  Smarter travel decisions.  Earlier bed times.  Scheduled doctor's visits.  A manageable work load that doesn't stress me or my immune system.

I'm confident that I'm going to live a life that will likely parallel the one I had prior to the diagnosis.  I've been dating a great person whom I definitely would never have met under different circumstances, and I'm completly re-engaged in traveling, in sports, in social events, and in life.  I take my meds every day with 100% compliance.  Never missed a day, even with a few trips across the country and a couple of trips halfway around the world. 

My life is better than I would have expected it was going to be a year ago. I gave myself the time to grieve, to lament, and to sort it all out for myself, on my time.  I read about it. Alot. I learned about it. I learned about what is available now, and what is on the horizon. 

Be prepared to impress yourself with what you can overcome and work though.

Be well.
Title: Re: to hell and back: one year since the diagnosis, and doing well
Post by: Common_ground on November 05, 2012, 01:29:42 am
Hi NY and thanks for sharing your story, truly inspirational.

I can just second that I never thought being HIV positive I could feel as well as I do today and even thou I was never very sick the news made me a mental wreck and NOWHERE could I imagine or think during the first few weeks following the diagnosis that I could write such a thing that life post diagnosis is pretty good.

Just as you did, I read A LOT, everything I could lay my hands on and it helped me to get a better understanding of basically everything HIV related and made me more comfortable with myself.

Good health and best wishes to everyone!

/C

   
Title: Re: to hell and back: one year since the diagnosis, and doing well
Post by: weasel on November 05, 2012, 11:11:58 am


  Hi   NY2011    :)

        I am glad to here you are handling your HIV   so well .

        Life goes on ,   With my new meds I feel like the old me    ;)

        Personally I have so many things I want to do  , I just try to keep

        my HIV  on the back burner  .

                                                Be well ,   Weasel 

           
Title: Re: to hell and back: one year since the diagnosis, and doing well
Post by: Cojo on November 05, 2012, 11:13:28 am
Thanks for this excellent post. I was just reflecting on the same reality of how the first few months after dx was an anxiety roller coaster and I am going to add a new post as well. Very inspiring - kudos
Title: Re: to hell and back: one year since the diagnosis, and doing well
Post by: NY2011 on November 05, 2012, 03:52:11 pm
Glad to hear. I like reading about other people's experiences. 
Title: Re: to hell and back: one year since the diagnosis, and doing well
Post by: lincoln6echo on November 05, 2012, 04:31:22 pm
Hey, thx for the post. Oct 31 was two mo's since I got the news, infected this past June.

Have had some pretty good days as of late,,today, not so much. Having a rough go of it these past few days but glad to read things like this to get some perspective.

ups and downs like others along the way.
Title: Re: to hell and back: one year since the diagnosis, and doing well
Post by: NY2011 on November 05, 2012, 05:40:54 pm
@lincoln6echo: I just read some of your posts, and noticed that you mentioned thinning hair.   I forgot about the noticeably thinning hair that I was experiencing within the first few weeks, especially before starting meds.  It grew back though, and nothing looks different.  No facial changes.  Nothing.  It helped alleviate the anxiety that I was having.   

Very happy about that.

 
Title: Re: to hell and back: one year since the diagnosis, and doing well
Post by: Anqueetas on November 06, 2012, 05:36:11 am
Its feel pretty to read your story. I gut the feeling the your first combination must be with some PI probably Lopinavir/ritonavir. I have the same experience with it, you have to poooo all day. Glad you get the right med for you. The period of trial and error on one own med can be very distressing mentally and physically.
Title: Re: to hell and back: one year since the diagnosis, and doing well
Post by: Jmarksto on November 06, 2012, 07:46:03 pm
NY2011;  Thank you for your post, it is inspirational.  I am 6 months in now myself and parts of your story seem so parallel - like the embarrassment filling the first prescription.

Good to hear you are doing well,

JM
Title: Re: to hell and back: one year since the diagnosis, and doing well
Post by: jayson702 on November 09, 2012, 01:25:19 pm
Wow great story I'm so glad your doing well.

You cd4 numbers are incredible. I wish to have those numbers someday myself.
Title: Re: to hell and back: one year since the diagnosis, and doing well
Post by: Fisher on November 09, 2012, 08:54:09 pm
Thank you buddy! Hope I follow in your foot steps!

-fisher