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When I Started HIV Meds: Step by Step on a Difficult Road

August 17, 2011

Lillibeth Gonzalez

Lillibeth Gonzalez

I was diagnosed with HIV in July 1992. Before starting HIV treatment, my T cells were 868 and I was in great shape, but I was angry at myself for trusting my husband and not wearing protection. I thought I was going to die, and I looked at my life from a different point of view. I started to hang out and drink. I didn't keep a good health regimen. That was the most ignorant decision I ever made. Due to that choice, my T cells went down to 0. I got tuberculosis, neuropathy, wasting syndrome, and had Pneumocystis pneumonia (PCP) four times.

I've dealt with many challenges: drug abuse; alcoholism; domestic violence, psychological and physical (coming from a dysfunctional family where my dad, an alcoholic, always beat my mom, I've had boyfriends and girlfriends who used to hit me); no support system; and all the stigma. I buried my sister and two brothers; I lost all three of them to AIDS. I lost my mom to breast cancer. I felt alone. I run into many people who feel the same. But you know what? All these obstacles helped me get stronger and always come out on top.

My doctor started giving me many different meds until I found one, or five, that worked. When I started taking medications I did not adhere to my dose (another stupid choice ... it's difficult since you're not accustomed to taking so many pills daily). I became "MDR," which stands for multiple drug resistance. It was very difficult; I was angry at myself for not adhering to the medication. I had to wait for a clinical trial that fit my criteria in order to participate (that experience was a horror, since you feel like you're running out of time).

I do want to say that HIV treatment has allowed me to live longer. I have been taking Epzicom (abacavir/3TC, Kivexa), Intelence (etravirine), Isentress (raltegravir), Norvir (ritonavir) and Prezista (darunavir) for the past two years and I would not change anything. They have helped me live a well-adjusted life.

My son was 9 years old when I was diagnosed, but I didn't disclose to him until he was 12 years old since I didn't want my condition to interfere with his school work. I wanted him to concentrate on going to school and pursuing college. I did not want to leave him alone. Today he's 27 years old; he graduated with a bachelor's degree and has a great job in the financial sector on Wall Street. He is happy to see that I'm still alive. He has his own apartment, car, a great circle of friends, and he travels a lot. We go out to many places together and celebrate life; we just celebrated July 4th in the Poconos.

I raised my son with great values. He doesn't do drugs or alcohol, or smoke cigarettes. I'm so proud of him; my circle of friends and family are always telling me he's such a good son. He is my greatest support system; he inspired me to do what I do today. He used to tell me a lot of times, "Mom, why don't you go out there and do something -- rather than complain about it?" So I took his advice! I changed my lifestyle, went to school, got a job, and now I love helping others empower themselves. I have done everything I wanted to do prior to getting the virus. I have gone on a vacation, on a cruise, horseback riding, and in August I'm going away again.

I have received awards for what I do, and hope to God I can help end this epidemic and get people to listen and practice safer sex, to keep as many as possible from getting infected.

I would advise people just starting HIV treatment to seek help in maintaining a healthy lifestyle. Seek a support system. Attend groups, listen to what others are saying about their experiences, ask for suggestions, ask questions, be very curious about the different types of medications and their side effects. Ask your doctor to help you find the medication that will work with your lifestyle (for example, if you're active and always on the go, get a medication that's taken once daily). Take into consideration what will work for you.

Reevaluate your priorities: What is important to you? Living a healthy life? Hiding and living in denial for the rest of your life? Do you want to be happy or do you just want to make others happy? It's all about you; you are living with a virus that can be easily controlled but you need to make the correct choices; seek help in making these choices.

I hope I can help others make a wise choice, and a healthy one. AIDS is not a disease; it's an adjustable lifestyle that can work for you if you make it work.

Lillibeth Gonzalez works as a peer health educator at Gay Men's Health Crisis, Inc. (GMHC), one of the world's first and largest providers of HIV/AIDS prevention, care and advocacy.

More From This Resource Center

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This article was provided by TheBody.
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Reader Comments:

Comment by: Anna (Corpus Christi) Wed., Sep. 11, 2013 at 10:49 pm UTC
Today Sept 11th i am in a funeral home at my Cousins Funeral & my 21 year old son tells me he has been diagnosis with HIV of all places to be told !! I am beside my self do not know what to do how to feel what to say he has know since March & he is barely telling me !! So he started smoking which is not good but reading your story gives me hope to think that my son can have a long life thanks again !!!!!
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Comment by: Remy Emodi (Abuja, Nigeria) Thu., Aug. 29, 2013 at 7:32 am UTC
Wow it the word for you Lillibeths. I don't know you but feel so much pride and gratitude for your inspiring story. You lit my life and world after reading your story. I know of stigma and discrimination which in my case is double. I am gay and HIV pos from a country that is considering passing a law that would further put salt to my injure. (Nigeria same sex prohibition bill. But I am finding a lot of reasons to live and enjoy life. one is like you a strong and personal relationship with God, a support system of MSM living with HIV in Abuja, and most the work I do. I work for an LGBTI organization in FCT which is devotion to the provision of HIV treatment, care and support for gay men and other men who have sex with men (MSM. I take alot of pride in my work. the sheer joy of being able to put a smile in the face of someone else espically if newly diagnosed or about to start ART is all the reward for me. I when i received my ART last July i hide it in my box for a month because i was still dealing with self stigma and the fear of all the side effects that may come with the drugs. but that all changed one day 10th August last year I disclosed to my boyfriend and he encouraged me to start medication and i started that same night and its been one year of ARV faithful love affair. I am proud that I stick to my drug and is yet to miss a single dose. reading about your story is a boost and inspiration for me. thank you for the work you and for sharing with us. Remy
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Comment by: carlos (georgia usa ) Mon., Aug. 12, 2013 at 10:41 am UTC
very good for this lady , god bless her heart love her.
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Comment by: Virginia (Uganda) Fri., Aug. 10, 2012 at 7:18 am UTC
Thank you for sharing your experience it is a great learning exp.
May i get the personal email for Lliibeth?
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Comment by: Jason (San Francisco, CA) Fri., Nov. 4, 2011 at 1:06 pm UTC
Here's my experience about starting HIV treatment: I went to the doctor, got my prescription, picked up the medication, took my one pill , and went to work the next day. Jeez! Starting medication really isn't that dramtic.
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Comment by: Mary (NYC) Wed., Sep. 7, 2011 at 11:48 am UTC
An amazing, inspiring story!
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Comment by: Alicia (New York City) Tue., Sep. 6, 2011 at 10:43 am UTC
This is one of the most inspiring stories I have ever read. I am personally honored to be a part of Lillibeth's life. She is my cousin and I say that with great pride. Lillibeth is the most amazing person I have ever known. Despite her trials and tribulations she is always smiling and more concerned about others, than herself. Her presence lights a room. Lillibeth truly ' lives' life. She enjoy every moment. She has a tremendous faith in God. I remember as a little girl going to Lillibeths home. Her mother was always cooking up a storm. You never left that home without a full belly thats for sure. Her siblings were kind loving people who simply took a wrong term in life for whatever the reason. Everyone has a different way of reacting to their circumstances. Some of us give up and some of us march forward. I too have had drugs( not of my own use) and domestic violence scar my life as well. Sometimes you feel like there is no way out but there is.
I must say Lillibeths son is as beautiful inside as he is outside. He is humble. He is caring. He is well educated. Ambitious and the best son a mother could ask for. She should be very proud for she did a great job.
When Lillibeth told me she was returning to school and then found a job she loved I shared in her joy. This is definitely her calling in life. Lillibeth can motivate anyone to do anything. She is uplifting. She is a walking medical miracle.
I know there is a stigma that comes with disclosing AIDS but I have told Lilly again and again to share her story. In doing so she has the ability to change so many lives. She can be the one to give that little push another AIDS patient might need. Just to see her living her daily life gives me the strength to persevere through my own dilemas in life. She has taught us how to savor every moment in life. How to stop and smell the flowers, how to dance in the rain and most of all how to trust in a great God. I LOVE you Lillibeth! Share this with the world!!!!!!!!!
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