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Updates from Lynn

May 10, 2012

I have been missing you women! I have been absent, but not gone. I get excited each time my email tells me one of my sisters has written a new blog. I’m sorry I haven’t been sharing my voice.

Updates: My health remains good. My mental health is a challenge. I started treatment for my eating disorder. Given the fact that I have been in and out of therapy for over 20 years, and am in the mental health profession myself, I am surprised how difficult this treatment has been. I have never worked harder in therapy. But I’m proud of myself for facing a demon. And truly everything is related. Learning to have a healthy relationship with food and with my body will contribute to my overall health-the ultimate goal. My labs continue to be great. No real concerns. This summer will mark 4 years of being HIV positive. I’m feeling like I might just make it after all. I say that a little tongue in cheek. I think we probably all went through the same initial thoughts of, “Oh my god, HIV? I’m going to die young!” I can’t say I’m totally over that feeling, but I can confidently say I believe I have a full life to live. I can’t change the fact that I have HIV, but I can work to change other things, like my physical health, my mental health, and my spiritual health.

Over the past few months there have been some HIV related events. We had an HIV educator at my place of employment to train staff. It was pretty nerve racking, knowing that I was sitting in the room with people who are talking about HIV and who have no idea of my status. Overall, it went pretty well. And I felt very supported by my boss for prioritizing this type of training. It brought me a step closer to wanting to be “out.” I am not ready yet, but I can feel myself getting more and more tired of the carrying the burden of secrecy. I am not helping others and I am hurting myself with the isolation, shame and stigma. As long as I stay silent I am doing it to myself.

I decided to disclose my status to someone who has become a good friend. I work with this person, and I waited over a year to make sure I really felt safe with her. Our friendship had gotten to a point where I couldn’t keep it a secret anymore. To really, really know me is to know that I have HIV. It is not who I am, but it definately colors my story. Her reaction was of course loving and supportive. She met me with a little denial-insisting that I would be ok and that we would grow to be old ladies together. I let her have her moment of shock and denial, I understand that I have had 3+ years to think about my status and find a way to accept it; it will take others a moment to accept it as well.

My baby will be 3 next week. Yes, I still have to call him my baby. As excited as I am to be witnessing such a beautiful little boy unfold I am still a mommy to that little baby boy who changed my life. I know I will be calling him baby into his adult years. And I believe I WILL be here to see those years.

Peace and Love and great Health to you all!

Not Being the NORMAL Mom

May 9, 2012

I can remember back in 1993 trying to get pregnant, via turkey baster and by standing on my head using a bowl, and going to the doctor to get a blood test to see if I was pregnant yet and the doctor telling me that I shouldn’t get pregnant. Then calling me on the phone after she, the doctor, with her newborn crying in the background, telling me that she didn’t think I was that kind of person to do that to a baby and I more than likely wouldn’t make it to even see my baby graduate high school. I then went to yet another doctor and told him I was trying to get pregnant and to test me and he sat there in silence, pondering his own thoughts and opinions, finally said ok and the appointment ended then. I then find out I was “maybe” pregnant. REALLY!!!!!!!!! I was so excited yet so confused. I was told to make an appointment with an OB/GYN. I went to that appointment and was told it was possibly a tubal pregnancy so blood work was done and an ultrasound scheduled. I went to the ultrasound appointment and there I saw my baby!!! A little peanut in my womb. He wasn’t in my tubes he was just still a lil thing, they tested me a little too early to give me a definite answer. As my appointments continued and I steadily got a bigger and bigger belly, my joy beamed from me. Still having doctors, family and friends look down on me for getting pregnant on purpose because of being afraid of me infecting my baby, all I could say was, “I know God will protect my baby”. They all looked at me as being stupid and having wishful thinking but I just knew my baby would be ok, just as I knew the sky is blue. The baby daddy (lol) was so excited, especially when we saw our little bundle of joy was going to be a boy. I wrote and scrapbooked every bit of information from each appointment (weight, t-cell count). I never took meds when pregnant even tho it was offered to me…well I should say it was forced upon me by doctors I did not trust and who looked down on me for getting pregnant so I refused.

At that time there wasn’t enough information to let me know it would be safe for my baby. I did go into pre-term labor with my son and was hospitalized for a week to make it stop. That was at 34 weeks along. This was also the time I fought with the woman in charge of the hospital itself because they posted a Biohazard sign on my hospital room door. Needless to say, they removed it and moved me to a room by the nurses station.

I finally had my baby boy at 38 weeks along, vaginally, no meds and he was perfect!!!!!! 2 days after he was put in my arms and we were about to pack to go home I had a nurse come in and try to get me to have my baby tested for HIV. She quickly became pissed off when, at the age of 19, I looked at her and said, “I may not have a PhD but I do KNOW that if they were to test my baby then, the test would be positive because it would show MY antibodies”. She told me that the doctor might have a problem releasing him and left the room. I was fuming like a momma bear protecting her cubs. I gave her 10 minutes to return then I was leaving—with MY baby. They must’ve thought because I was young, I would do whatever they said. I had done my homework!! She finally returned to tell me they would release him. I went home that day consumed with joy and pride that I was a new momma with a precious gift from God.

I took my baby to his first doctor appointment and was then hit with yet another doctor who talked down to me and when I refused to have my baby tested just yet she then told me, “Any good mother would have their baby tested”. Of course we switched doctors. I did find a good pediatrican for my baby and had him tested at 9 months. His ELISA (test) turned up positive but his Western Blot (test) turned up negative. So we waited until he was 12 months old and had him tested again. Both tests came back negative. Then at 18 months he was tested again, so he would have 2 negative tests confirming he was negative. And of course, it was confirmed!!!!!! Through all the misery and judgement all those doctors and other people tried to put me through, I followed my heart, my instinct, my gut and disregarded what was said to me and I got to have my baby boy who was and is very healthy to this day!!!! I do not know why God protected my baby and doesn’t protect others, I just know that for me, I knew with every part of my being he would be fine. The stigma and condemnation then and now for a woman to want and go through with having a baby is uncalled for. The research today shows that the transmission rate is nearly gone when meds are used and the mother’s viral load is undetectable. We have come a long way since 1993 and I am a strong believer that NO ONE should judge when they have no clue and/or have not walked in our shoes.

I have since going through all of that above, did have another planned baby. I found a doctor I trusted and who knows what he is talking about and backed mine and my then husband’s decision to conceive again. I had a baby girl this time, c-section and on meds. She, too, is negative and healthy as ever. She is now 13 and definitely a teenager. I want to duct tape her to the wall sometimes lol.

So to all the doctors, family and friends who didn’t back me, just judged me, I say kiss my butt!! I am still alive and kickin’ and have been able to be a mom to 2 beautiful children that are NEGATIVE!!!!!!!!!

I hope this is helpful to some of you. Even through all the horrible negativity I have lasted and been able to stand up for what I believed in.

New blog post from Tiffany in “Voices From Our Allies”

May 9, 2012

New blog post from Tiffany in “Voices From Our Allies”: The Forgotten…

Many years ago my college roommate, Tawana Washington, wrote this hauntingly brilliant poem called “Fits the Description.” The poem spoke about the negative portrayals and criminalization of Black men within the American psyche. You know the descriptions she spoke of, the generic ones: “black male, medium build” that so astutely allow you to identify the “suspect.” After all, Black men only make up what… 6% of the American population, surely I know the Black man they mean. ALL OF THEM! I knew at the time that the piece was brilliant but I naively thought that such descriptors would have no place in my HIV work 15 years later.

Yet they do. Last week while being interviewed, I talked about the role of Black women in the HIV epidemic primarily from a purely American viewpoint and how it appears that we are often pawns in the search for a cure, prevention, or better treatment options. I say pawns because it never feels like the interest of Black women in HIV is relevant to the larger community unless it benefits them (the “them” not being Black women of course). If you want to have the face of HIV then let’s cart out a Black woman, who may unwittingly play into the racial dogma of Black men as predators. After all the only time Black men and HIV are spoken about is if we are looking at Black MSM populations or the highly popularized villain the Black heterosexual male on the DL. Or of course the Black man in jail who comes home to bring HIV to his female partner. Let’s not forget he is this hyper sexualized babymaking machine not unlike the Buck in the field.

So when I was asked about my interactions with Black heterosexual men and HIV,  it wasn’t a simple answer. But I must say I find it much easier to talk about HIV with Black heterosexual men because point blank they are rarely, if ever, included in the discussion about risk or prevention. Therefore when it comes up there seems to be the willingness and excitement to be involved in the discourse. If Black women are pawns, Black heterosexual men are plain FORGOTTEN! And if we in the HIV/AIDS activist community are serious about preventing HIV, we cannot simply neglect an entire segment of population even if we fell for the okie doke of descriptions regarding Black men.

My absence…

May 8, 2012

Well I’ve been away for awhile. However, I’m excited to return!

I had a family crisis which consumed all of my spare time. I fell behind in work life, home life and personal life. Now that the problem is resolved I have had to play catch up for awhile to get back into the swing of things. I’m happy to put that chapter behind me and enter this new chapter.

Life is very unpredictable. Just as you begin to say, “Hey, it’s going to be okay” life gives you something else to overcome and it seems that you are right back to where you started, or even further behind. The only positive thing I can say from these experiences is that you learn something each and every time. I can honestly say that I have learned a great deal from my many challenges. It is because of the challenges that I am who I am today…a smarter, more intelligent woman with even more to share and give.

Oh Baby!

May 3, 2012

Today I step into my third and final semester of pregnancy. Each time my baby kicks me it brings me immense joy and closer to understanding what it meant when all you sisters mentioned the joy and lease of life that you got when you saw your children. I am so looking forward to motherhood.

My medicines began with my second trimester. Health has been a little unpredictable – initially I use to throw up a lot, my appetite decreased and on and off there were fevers, severe headaches, weight loss and other ailments. Most people who didn’t know the truth would say “You are having a difficult pregnancy..” and I would agree, only I knew there was more than just that. With the excitement was a lot of nervousness and anxiety. I just prayed everyday my baby is safe inside.

Then last week I visited my practitioner. My viral load had gone down to undetectable and the happiness of that moment made me forget all the discomfort I was going through. Eagerly waiting for these couple of months to pass soon and praying every day.

Your’s Sincerely,

Sonia

My Body May Feel Weak Sometimes, But My Spirit Always Pulls Me Through

May 2, 2012
Maria

(But even sometimes my spirit has a limit!!) 

Sometimes I feel like I can’t continue. I feel that the energy gets low. This is normal to me…it has always been like this. Ever since I was a teen I had this fear that I had to live every moment to the extreme. This is a good thing, but it can be a bad thing also for people living with HIV or any disease—and even for someone that is healthy.

I think what happens to me is that I live on a constant roller coaster. Ever since I changed my eating habits and practice forgiveness– trying to be in the light and send light to others that may not have love for me–it’s getting better. But as many of us know, we have good days and not so good days…and sometimes I suffer from fatigue and I HATE HATE HATE to feel fatigued!!! Just being there doing nothing…I know I am a very hyperactive person and I am a high energy person. Even if I am laying down trying to relax or even meditating, my mind always tries to roam somewhere on the things I have to do. So basically when my body shuts down, I push it with my spirit! I refuse to let my body control my spirit, but I am learning that I have to balance everything and not go from one extreme to another!

It’s ok if we don’t get to do everything we planned to do today…there is always tomorrow.

It’s ok to just be lazy and not do anything. It’s ok to say NO to others when you don’t have anything to even give yourself! Because in the end, if you get sick or overwhelmed, you won’t be able to give ANYTHING to anyone…including yourself.

I am learning to try and not stress on the future…the what if’s…the future is not promised! Our past is gone, so I want to live for today! But here is where it gets tricky for me: LIVE TODAY TO THE FULLEST, BUT NOT WITH THE ANXIETY THAT THERE WON’T BE A TOMORROW. So yes, my spirit is strong as hell! Yes, I am a strong woman! But even the strong fall.

I don’t want to fall. I want to continue on living healthy and having that perfect balance. So even though many years have passed living with this virus, I am still in cycles with it…or maybe I am just getting older and wiser…I don’t know.

I just know that every time I get up and feel 100% healthy, I try to do it all…live it all, but then the time comes when my body says: Maria, slow down or I will make you slow down! So what does my stubborn self do? Push myself to the limit..that is why I know that my spirit is stronger than my body and mind!

I believe that is why when I am emotionally sad or I feel my spirit weak is when I have felt the sickest and this is like a vicious cycle. I hate to feel sick, but I make myself sick taking my body to the limit. So then I find myself laying in bed, not feeling well..thinking too much! And BAM! My spirit stumbles. So I can’t do this to myself anymore!!!

I need to step back and relax and breathe…really enjoy life and the days I am feeling 100%.  Sometimes I also think that I do this to myself because I feel that I want to take advantage of feeling strong. I dont know…

I also have to accept that I am HUMAN…and that we don’t feel 100% all the time! HIV negative people get sick also. They get low on energy also! I have to stop being so hard on myself and my body…even if my spirit always pulls me through.

I have sat and thought–and even friends that observe me have noticed–that I don’t rest how I should. I think I am resting…but am I? Really, let’s think about it…do we really rest our bodies and mind?

Maybe this is one of the reasons that I have been undetectable for more than 11 years and my T-cells never go up more than 399..never ever! Even though I don’t get sick or hospitalized (thank God), this is causing a form of stress in me that I have learned to live with all my life!

So this woman will try and chill and relax. I hope if someone can relate to this, you will also do the same.

There is always tomorrow. Enjoy today, but with measure…hold your loved ones…take time to walk, to watch your favorite show, to share with your family…just put yourself first! There is always tomorrow! And if tomorrow never comes, at least you will leave this life knowing you gave your best and lived the best you could without pushing yourself.

So yes, my SPIRIT pulls me through, and I am thankful for this! But I want spirit, mind, body and soul in harmony as one.

Love and Light,

Maria T Mejia

ACT UP

April 26, 2012
Maria

WE NEED TO HAVE THE PASSION AS ACTIVISTS AND ADVOCATES THAT THOSE IN THE BEGINNING OF ACT UP DAYS DID!

ACT UP = ACTION AND PEOPLE FIGHTING FOR OUR RIGHTS TOGETHER AS ONE!

I want to start my blog talking about the story behind it for those that don’t know what it is (from ACT UP’s Wikipedia page):

AIDS Coalition to Unleash Power (ACT UP) is an international direct action advocacy group working to impact the lives of people with AIDS (PWAs) and the AIDS pandemic to bring about legislation, medical research and treatment and policies to ultimately bring an end to the disease by mitigating loss of health and lives. ACT UP was effectively formed in March 1987 at the Lesbian and Gay Community Services Center in New York. Larry Kramer was asked to speak as part of a rotating speaker series, and his well-attended speech focused on action to fight AIDS. Kramer spoke out against the Gay Men’s Health Crisis (GMHC), which he perceived as politically impotent. Kramer had co-founded the GMHC but had resigned from its board of directors in 1983. According to Douglas Crimp, Kramer posed a question to the audience: “Do we want to start a new organization devoted to political action?” The answer was “a resounding yes.” Approximately 300 people met two days later to form ACT UP.

I am one of those who believe that we have to go back to basics, and back to the Larry Kramer times and throw ourselves to the streets and fight for our rights … rights that are being taken little by little from us! So many new infections and not enough funding! So much we want to do … but people are not dying as in the times when ACT UP started … this is a good thing that we have new medications that are making us live longer. But this DOES NOT MEAN we have to just live, be silent and take our medicine and let others do the work for us! HIV/AIDS is still killing people all over the world.

Why are people getting infected every 9-1/2 minutes just here in the U.S. alone? Why are people not respecting the virus? Why if we have the knowledge do we continue to put ourselves at risk? WHEN WE KNOW BETTER, WE DO BETTER!

I know many of the answers that people tell me — like HIV is not a death sentence anymore, there is medication and we can live long and productive lives! But AIDS IS A BITCH! And you have to live it to know it!

I always see the same people in the conferences and events here in South Florida where I am from. Where is everyone else that is infected? They are hiding because stigma and discrimination after 30 years still exist everywhere! This is a reality, but if we want a change the change starts with the man in the mirror! I know in the Larry Kramer times things were different and a direct threat was happening … people were dropping like flies and people were dying over and over. So many of my friends are gone in these 23 years of me being infected with the virus.

In 1989 when I was infected, I was 16 and I didn’t even know who Larry Kramer was. I was diagnosed in 1991, when Ryan White passed. This was someone that I saw on TV and saw as a great activist and a great inspiration that fought for our rights! I learned about ACT UP and Larry Kramer later on in my years living with the virus.

HIV activists are different now in the aspect that we have more resources like media. I myself use it all over the world to get my message across. The story never changes and I believe (for me) telling our testimonies and showing our different faces is the most effective way to change the stereotypes of people living with HIV/AIDS. We are no longer the people that were shown in the 1980s dying and looking very thin. I will always be grateful to people like Larry Kramer that fought for our rights and paved the way for us newer activists. They didn’t have the Internet. They didn’t have the information that is available now. All they knew is that something had to be done and people in their community were dying of GRID!

I also noticed they were very united and they didn’t give a damn to say what they felt. The newer activists have to have that passion inside of us to fight for our RIGHTS! Every day I hear of another ASO being cut off. Why are we sitting back and letting things like this happen? Are we going to permit ACT UP and other activists to have worked so much in vain? Do we have to actually see people dying and dropping like flies to do something? I know many are in denial, feel shame, have fear and they just are dealing with life or protecting their families; so the ones that are available to do something must get together and FIGHT! FIGHT FIGHT! and never tear each other down.

The reality is you have to have a deep passion to be an activist, and you can get burned out! There is no money in this passion. No one wants to be a poster child for HIV/AIDS (at least I don’t)! Please let’s be one and follow the example of ACT UP before things get worse.

Thirty years and I feel the candle is burning out slowly! Why? Do we think nothing’s going to happen to us … and if it doesn’t, who cares what happens to others?

Are we in denial of what is happening? I know many fierce activists all over the world! But we can’t do it alone … we have to leave all our differences aside if that is the problem and fight for our fellow man! If we don’t do it, no one will do it for us! Believe that!

So yes many things have changed in HIV activism … but the story is the same! We are human beings that need to make that change… and become one force. Only then we will be able to be listened to with respect and authority. I have hope that this will happen … I see no other way.

UNITED WE STAND, DIVIDED WE FALL: real talk.

As always …

Love and Light,

Maria T. Mejia

This blog was cross-posted from The Body.

Sisters

April 25, 2012

A lot has happened since the year started. I got new friends or should I say sisters. When my fiance proposed they were the 1st people I told, coz I knew they would celebrate with me. Even if we are miles apart it sometimes feel like we live together. What’s gonna make my wedding special is the fact that they will be there, they r even making sure I don’t wear a hideous dress by offering to go with me for fittings. It means a lot to me to have their support.

I’ve been struggling to put on weight and have a healthy BMI, but with their help I gained 5kg and my BMI is 20.

What I love most about this group of women is their sense of humour, their ability to turn mountains into mole hills and the fact that we can talk for hours without mentioning HIV.

These people are my rock, my Divas, my guardian angels.

I know they are reading this, from the bottom of my heart I wanna say Ndiyabulela.

If you are in South Africa or Botswana and want to be part of us, feel free to comment and we’ll take it from there.

It’s Amazing to Me

April 24, 2012
  • It’s amazing to me that I am still here after all these years of being HIV+ when in the beginning of HIV/AIDS coming out it was considered a death sentence.
  • It’s amazing to me that as I sit and fill out and plan for my son’s graduation party, that when I was pregnant with him, there were doctors that told me I wouldn’t live to see him graduate high school.
  • It’s amazing to me that after finding out that I am HIV+ and how I became infected, I still have friends and family that have unprotected sex with people that have never been tested.  The mentality is still there that “It won’t happen to me”.
  • It’s amazing to me that I am the only person my friends know, that is HIV+ , when there are so many folks out there that are infected. Really makes me think about all the folks that are infected and don’t know it or don’t want to find out.
  • It’s amazing to me that people look at me when they first find out about me being HIV+ and say and think things like, “So that’s why she is so skinny”. Everyone in my family is skinny.  I weigh 105 lbs.  I want to say to them, “No that’s not why and what is your reason for being fat”.  Can you feel the frustration coming out in me today? lol  I am a very loving person and would never say such a thing but it really makes me mad that the perception of being HIV+ is so crazy.
  • It’s amazing to me that after all the information that is provided out there on HIV/AIDS that people still don’t want to learn or listen to people like me and become educated to not only protect themselves but to also not be afraid to hug me or eat after me.
  • It’s amazing to me that there are still people out there that think HIV is a gay disease.  Hello people–I’m straight–AND I didn’t have anal sex to get it!!!!
  • It’s amazing to me that after all of these years of being infected that it’s only been in the last couple of years that my health has been an issue.  I wonder sometimes why God let me be stupid and have sex with the “wrong” guy but then again I feel that God has taken the bad and turned it to good because I now can help others to stop and think.  When you do not have your health you have nothing.  I know my blog seems a little crazy but I thought I would share my thoughts.

Doc told me he thinks not only do I have HIV arthritis but also HIV neuropathy in my entire body.  I hurt everyday but taking Lyrica has made suuuuchhhhh a big difference.  I feel I can function and be a Mom and wife. I also take Hydrocodone to help with my body pain and my neck, I have a bulging disc and pinched nerve in my neck.  But today has been really rough as my neck is hurting really bad and going down my back and the pain med is not kicking the pain.  HIV and pain are in my face everyday now but I have to stay strong and not let my children see me in pain.

I want so badly to be able to work but I never know from day to day how I am going to feel.  I want to be “somebody” and help others.  I pray something in this blog will help someone somewhere.  I am such a people person and love to laugh and be goofy.  When I meet some people after talking with them for just a little while and they find out I am HIV+ the shock on their face is priceless.  I guess people think I should be sickly looking or something.  I am very open with my status but I don’t tell everyone I meet of course because I have had bad experiences.  And that to me is amazing because it shows just how uneducated people STILL are about this disease and how it is spread.  It’s not just a gay disease anymore, it’s a people disease.

I hope all of you AMAZING women are doing wonderful!!!

da sassi diva – Intro

April 23, 2012

The Journey

Well I don’t even know how to start. I have always thought I would be one of the last people who would contract the illness. I mean, I’m from the urban areas, went to multi-racial school and quite educated if I should say so myself, even though I’m not from a well-to-do family. My mother was able to provide for me and my two siblings. I waited till I was 19 before having sex, prior to being raped at 18. Even after that horrible experience, I picked myself up, learnt from it and grew stronger–even managed to get myself at university. I knew the consequences of having unprotected sex but I was ignorant. I will never blame anyone for being infected as it was also my duty to insist on condom use every time. Being an open person that I am I did not hesitate telling my family and friends…that has helped me a lot as I have received so much love and support. Basically the journey starts now and so much better is yet to come!

More about da sassi diva:  I was born in Swaziland, raised in the Free-state and bred in Johannesburg. I’m 21 years old and currently residing in Cape Town as I’m pursuing higher education in Cape Peninsula University of Technology, doing my 2nd year in the applied sciences faculty. I was diagnosed with HIV in June 2011 during a routine check up. I was infected by my very first boyfriend who cheated on me while I was here in Cape Town. He stays in Johannesburg and unfortunately we broke up as a result of his infidelity. I don’t hold any grudges against him. My family fully supports me, especially my mother whom I am eternally grateful for having. She is the reason why I push myself beyond my set limits. I know I have a long way to go but for some odd reason the future looks very bright thanks to the advanced treatments, understanding and healthy diet in conjunction with exercise.

Why da sassi diva wants to be a part of A Girl Like Me: My main reason is that I want to eradicate the mentality that university students do not get infected and also show South Africa that they are still people living with this illness…despite them making notions that once infected the result is death even though there’s medicine and change of lifestyle.