Saturday, June 2, 2012

Starting Meds or HIV Sucks

Let's start this way: I have an amazing job with amazing people, especially my co-director Amber Hollibaugh and my Shelter Program Director Jay Toole. I've known them both for years and years before working with them and I love them both dearly.

Though I live with HIV, I am healthy. I am fed. My bills (except my student loans) are paid. I have an awesome roommate and a beautiful dog. My family loves the Hell out of me, and I have seven siblings that hold up their big brother always. I have friends/family/complicated definition folks in my life such as JT Mikulka, Bebe Zahara Benet, RJ Thompson, Roojie, Kamal Fizazi, Sam Matin, Di Sands, Jennifer Molina Balbuena de Hannon, Jason Ruiz, Coya Hope Artichoker, Anh Thu Pham, Betty Tisel and Sarah Farley, Susan Raffo and Rocki Simoes, Rigo and Nubia, my beautiful nieces and nephews, my godson Santiago aka Baby Rufus, Troll Baby and Rebs, Gracie, crazy ass and brilliant Ebony, my brother from another mother and father Carlitos Blanquitos, and so so so many others. I am so blessed and full up on love, and I KNOW that so many folks walking around this earth experience or believe that they have a love deficit. I don't. I NEVER have had. I have ALWAYS in every moment, in my deepest poverty, during the greatest violence, and in my fiercest hurt, and during my most self induced crazy, been held by so many with such compassion that if any one of them walked down to Hudson River park and commanded the River to split open, I wouldn't have been the least surprised. It would be nice though, if they do, if I could at least grab my good chancletas first.

We might be going to Jersey, but we don't have to LOOK like we live in Jersey.

My life changed this week. Only slightly. Only nominally. But it changed.  After ten years of being so very blessed.  After ten years of having my body, and all I've put it through, kick HIV's ass (I am one of those super rare and magical creatures called a nonprogressor......not a super nonprogressor...but a nonprogressor....there is an important distinction that I am about to talk about), my amazing doctor, Steve Dillon at Gotham Medical, recommended that I start HAART treatment.

Nonprogressors go years, in my case a decade, without needing HIV meds. Supernonprogressors never need them. My body just got a little tired. It fought so hard for so so so long. From 25 to 35 it fought a war that it will win but now it needs just a little help. Just a bit. 

PS Dr. Dillon and the practitioners are Gotham Medical, formerly the Chelsea Doctors.

Lets be real. For ten years my body kept my HIV viral loads at or near undetectable ON ITS OWN. My Tcells, are at "normie" levels. Near a thousand (and usually over....most normies aren't even that high).

And, to quote my girl, Lezbehonest....the news that I have to start HAART treatment kicked my motherfuckingass.

I ain't dying. So far from it. I ain't sick. So far from it. I get to start a new state of the art med (Complera) particularly designed for folks like me that have a natural resistance to HIV. The side effects are almost non existent besides some initial fatigue and headaches. I AM SO FUCKING BLESSED.

And today, I broke the fuck down.

My walk with HIV is MY walk. And if I stop to compare it to other folks journey, I have nothing to complain about. But my feelings are real. My experience is real. My sadness and hurt is REAL It's not cute. It's not easy. It's not a tragedy. It's not a crisis. But it is hard. It does hurt. And this transition and its incumbent feelings are all valid.

Thank you everyone who picked up the phone or sent a text today. I needed it. I needed you. I still need you. Thank you. I love you. And anyone else that walks this walk...know that it's gonna be alright but its gonna hurt when you take those first few steps...whether it's a week after your diagnosis or after a decade.

Imma love and live well. So will you.

10 comments:

  1. Thank you for your honesty and can relate that after a really good stretch I too, had to start treatment. I am sooooo glad the medical world has improved on the drugs cause the side effects are minimal compared to what friends had to go through in the early 90's...onward and upward

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  2. Sending you love, love, love. So proud of you!

    Yogi

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  3. I'm so glad to hear the drugs have progressed while you were non-progressing. I'm glad that you don't have to take the heavy-duty stuff that has a lot of side effects. Keep us posted!

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  4. Brandon -- so blessed to be with you on this walk. I am sad/enraged for you. And I am here to help you hold the hurt and press on, as I know you will. Thanks so much for sharing this. xoxo

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  5. I want something more wise or comforting to say, but all I have is that I'm with you.

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  6. Lanise Waites CoatsJune 2, 2012 at 9:01 PM

    Brandon, of course you write beautifully, but what has impressed me the most by this read is your 'intouchwithyourhonesty' quality...love, pathos, humor, worry...all of it is there and reachable by you and then shared with us...To me,all this is what makes for a good,strong immune system, in large part. I cerainly wish you minimal effects other than the desirable ones..no sucky 'side' effects...and, anytime I can be of any service, please call on me...new friends only add to your love load!

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  7. You are brave and strong in your honesty and your heart is far too big for any ole virus to try to take you down.

    But more than anything, you are an incredible person whom we are all lucky to have in our lives, the same person you'll be with the meds in your body, the same person you'll be regardless... unless you get killer abs, then you'll probably forget we all exist and spend all your time dancin' on the bar at splash or some shit.

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  8. Thank you and love to all y'all. Xoxoxo.

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  9. Dearest. Not so fast with giving up your hard-earned - SUPER DUPER MAGICAL NEGRO title. Babe, that shit takes a life time to build, and, because your are you, this is like a promotion - SUPER DUPER MAGICAL NEGRO NON-PROGRESSOR (and progressive!) THAT HAS A PICK ME UP TO KEEP BEING A SUPER DUPER MAGICAL NEGRO! I am certain if anyone can wear these drugs well, it´s you. Worry not.

    And, if it sucks, tell us about it. This is your gift, using your vulnerability to remind us all how fucking human we all are. So, cry your tears TINA T.! Then pick you ass up and get back to changing this world.

    Love,
    Julio

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  10. you ar sooo lucky , when I found out I was pos, my T cells were less than .5.... I had to live in a hospital room for 3 months in a bubble ....I nearl died twice , had bone marrow biopsies, spinal taps, went into kidney failure 3 times and I am still here , ive never known anything other than meds since I found out 3 years 10 monts and 43 days ago, and since my sister has been pos for almost 11 years and my aunt died a few years ago from ARC my immediately family has been more supportive than i could ever have imagined ... as I play with my nephew(he is sooo precious) I can only think of how inspirational you personally have been to me over the past few months of our friendship ... do know that you inspire people everyday and please never lose faith ......Thank You

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Thank you for sharing your thoughts, feelings, and insights. And thank you for reading!