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Friday, September 14, 2012

AFRAID to get back into HIV care: WORST MISTAKE I ever made!

Forget the dizziniess, puking, diarrhea and other wacko-side-effects that come with starting the once-a-day antiretroviral (ARV) pill Atripla (um - this is my experience, I have friends who are fine with this ARV);  it was when the killer whales came out at night swarming the wooden raft I was trapped on in the middle of the black sea; [me] deathly afraid as they smashed the corners of the raft trying to get me to roll into their death-jaws; AND THEN WAKING UP BREATHING DEEPLY DRENCHED IN SWEAT; that made me think twice about popping this pink sucker daily ever again! These effects. . . these wicked evil dreams went on for weeks. . . I couldn't take it! I simply just couldn't take it anymore! So I stopped.

Fact is when people asked me if I was taking my meds (after I stopped) - I lied. I told them I was. It was none of their business and I certainly didn't want to hear the damn lectures about the importance of taking HIV meds. ["Blah, Blah Blah in my head!"] I had big muscles, my diet was good and after my first blood checks, I was undetectable. So there was no need (or so I thought) to have to go through the hell of getting past the side-effects of the medication anymore. I "took control" of my own health (meaning stupid-in-my-head-kicked-in) and I stopped taking the pill. As long as I could see big muscles on the outside, I figured my insides were okay. Besides, I figured if this one medication had all these side effects I could not handle, all the rest must be the same; so there was no reason to even ask my doctor for another dose [prescription] of punishing.  So in plain-jane-terms. . . I said to myself,  "Fuck-it! I am done!"

In a previous post I talked about my baby brother Andy and his struggles; I share the story about when he called me [back in 2010] and I had to rush to the hospital because he told me that the doctors were about to intubate him (he refused to take meds - back then AZT); he couldn't breathe on his own. He couldn't handle the med's side-effects. He asked [begged] me to not let the doctor's do this to him. He wanted to just die.He was done fighting for life. When I arrived I was too late - the tubes were inside him; However, even the doctor's told me it was too late - even with the tubes inside him; with PCP and so many other complications his body would not win. Regardless, I had to honor Andy's wish and have the tubes pulled out of him. What was really scary for me was the very moment my eyes laid upon him. I froze! OMG!!!!!! I thought I stared death [my own death] in the face! I was now truly afraid - sooooo afraid - to tell anyone that I had stopped my medication. I was ashamed.

Early June 2011, I was rushed to the hospital by ambulance as a result of various health complications; following tests and more I learned that my t-cells had crashed. UGH!!!!!! I figured there was no saving me now. I figured I would become just like Andy. DEAD so early in life. Man was I scared shitless!

REALITY!!! The doctors told me I still had a fighting chance, but only if I stayed in care; it was my choice to make. So I dropped the ego, let go of my fear and listened! I took an active role in following direction and I started on new meds. Truvada / Kaletra cocktail. Once I got past the puking and "shit" (literally) and saw my t-cells climbing and my viral load decreasing, man did I ever feel better about myself. 1-year later I have managed to get back on stage, live my dreams and fight for every fiber of life I have with which I have been blessed.

I can't tell you how grateful I am to be back in care and living a VERY HEALTHY lifestyle. I am living like I have never before. Every 3-4 months I go to get my blood checked just to make sure things are still good; I am beyond anal retentive about taking my meds in the morning and night! Actually I now freak out if I am an hour late! HA! That's how important I now realize it is to maintain regular care of living with HIV.

With all this said, I hope others - out there - who have dropped out of care; including those of you who have stopped taking meds - no matter the excuse- that you - ALL OF YOU  - will reconsider!

If my blog and personal experience is not enough, then this coming Tuesday, I invite you to join me as I sit on a panel for a Partners In+ Care webinar session to learn about the importance of staying in care. YOUR LIFE MATTERS! SO PLEASE JOIN ME IN RETURNING. . . COMING BACK TO MANAGING YOUR HEALTH CARE.

Here's the info:

Partners in+care Webinar Series
Reaching Out to Keep Our Friends in Care
Tuesday, September 18, 2012 at 4:00pm ET

Agenda: We all know people who know their HIV+ status, but are not in care. How do we work with our friends, family, lovers and others to make sure they get into and stay in care? Tyler TerMeer of the Ohio AIDS Coalition will talk about his experiences in working with loved ones on staying in care. In addition, we will have a panel conversation to flush out issues why our loved ones are not in care and how we can respond to make sure they lead happy and healthy lives. The panel includes Dr. Loida Bonney of Emory University College of Medicine and Daniel Bauer of Living Pozitively in addition to Tyler TerMeer!

Dial-in#: 866.394.2346
Participant Code: 394 154 6368 #


I hope this post inspires at least one person living with HIV/AIDS to consider the importance of getting back into care. I hope you will join in next Tuesday and chime in [or simply just listen]!

I am curious - has anyone else stopped care? Why? And what did it take for you to get back into managing your HIV care? I want to hear from you!

I am Daniel and I am living pozitively. Thank you for following my blog!

p.s. I encourage everyone to JustGetTested! Sex is fun! Infection is not!!


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