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Leaning into my loss

April 15, 2014

Photo_2014.04.14March has marched on and I feel I have let it drift over me. It began well and I visited my specialist hospital, following a referral from their HIV midwife who I consulted in November. I’m not pregnant but I was considering trying. That in itself is amazing, as I was sterilised when my daughter was born by c-section in 2001. I had been advised to abort because I had a 15-year life expectancy. The midwife cried when she gave me my diagnosis and I couldn’t even look at the 21-week scan.

How times have changed. Just 13 years on and I met a doctor who said he was prepared to help me ‘on this journey.’ He explained the percentage chance and the cost of conception. The birth would be free and fully supported as a natural vaginal birth, if there were no complications. How wonderful and inspiring to know that women living with HIV can now get this support. How great is the NHS – well in Chelsea and Westminster! Actually, even in my local hospital I was the first HIV pregnancy they had, and after I refused an abortion they did get a consultant for me and I started on AZT.

My daughter was removed still in her water sac, and has grown to a healthy, beautiful, strong young woman, but the birth was very traumatic. I felt so ill and scared, my husband was there covered head to toe in scrubs, the nurses had visors and the smell of burning flesh as they cut me was repugnant. ‘It’s like slaughtering a goat,’ he said. I cried, then more comforting he soothed ‘Tiga wana, Nĩngwendete’, and held my hand. We had told no family or friends of our status and I just felt out of control and alone.

A totally different experience from my son, who was born in a missionary hospital in Kiambu. There was no doctor around, but many mamas and nurses and nuns, and even though just before his delivery, mama Kamau was in the bed next to me screaming, there was a sisterhood, a curtain, and I was happy, excited and full of faith. That evening I hobbled to the telephone, told his baba, ‘It’s a boy, 10 fingers and 10 perfect toes’, then spent the night in the dorm with him in my arms, intoxicated with his beautiful smell, and in the morning I woke to hymns and waited for all our family to visit. All was great with the world.

Last year he died of suicide. I still don’t know how to follow that statement. I still don’t believe it. My arms ache to hold him, and I spray Lynx Africa and smell his pillow to remember. I want a baby, but I know rationally that this is grief reaction and I can’t replace him.

So thank you my doctors for allowing me to process that and to be given the opportunity, and feel supported. Thank you my daughters for suggesting adoption or fostering, but I need to focus on you, as you’re grieving too. I have learned my mistakes, leaned into my loss, and painted his portrait. I know he is still with me and when the sun shines I can feel his light. He was there for me, protecting me, so brave and bright. His heart got broken too many times and I couldn’t put the pieces back. You don’t have to be infected with HIV to be affected.

I Made a Vow…

April 10, 2014

Sonya posted a new blog, I Made a Vow… on A Girl Like Me’s Voices from our Allies:

Lynette was in a Harlem hospital on the 3rd floor in a room alone, and refused to give her life to Christ as I stood there begging! Quarantined due to the opportunistic infection, her body was plagued with things besides her AIDS diagnosis. I pleaded with her that people said God was a just God, healer, a loving God, and most of all a forgiving God… “Let’s give him a chance together.” Lynette, just stared ahead as if off into a dream, she bellowed “Sonya, F&%^* you and F&%* God.” I truly thought the ceiling was going to fall on our heads, and I held her hand, squeezing as if our lives depended on the squeeze, and in essence it did. She wouldn’t budge, she just wanted me to go to the corner and get her something to get her high, as she was telling me the imaginary man in her room was there to have sex with her.

My best friend, confidante, ride or die partner, neighbor, & sister friend was on the brink of death, pointing her finger and directing her anger at me because she was positive and I was not. Lynette was upset beyond words because life dealt her an unfair pair of cards according to her… no spades to cut to win the book. Yes, she knew she was positive; we went and got tested together. Instead of her taking her meds and living a sober life she spread the disease knowingly to men and women and some say the family dog. She wanted to take out as many as she could because no one cared about her or told her anything about this thing called HIV/AIDS, so why should she care about anyone else! Besides, she was only 27 years old without ever experiencing a few simple things in life like being a mother, purchasing her first home, going to her high school prom, or driving her own car.

Those were the last words I ever heard my friend mutter…she died before Monday could grace the calendar. She left the world angry, upset, and cursing me and God out. I made a vow to God at her funeral…the funeral where they didn’t even open her casket for us to say our goodbyes because they thought HIV/AIDS was going to jump out of the casket on to them! Foolish Stigma thinking people!

So, when people ask me why I do what I do pertaining to HIV/AIDS Awareness…I think back over my life. I think back to that day we went and got our results together and one of us was positive. I understand that pivotal moment in my life of living was at that precise moment. I was mandated with a charge to keep and a God to Glorify. I do what I do because I want others to live stigma free, live without judgment, to be aware that most people don’t care about spreading the disease to others, to use protection, and get tested. I do what I do because I made a vow to God, and I made a vow to my best friend Lynette to learn as much as I could about the disease, and to ensure that no one else would knowingly just spread the disease because of fear and anger.

My HIV Life Today

April 4, 2014

posgirl photoI am in the process of changing HIV doctors. I am going back to the MD that I initially saw when I moved back to Missouri but at that time I was abusing prescription drugs and he saw right through me and that pissed me off. My present MD is okay but I just don’t feel a connection to him. So I will go back to the first MD, tell him he was right and that I am now in recovery. I am a little scared but know it will be okay.

I have a lot of issues with my son who I adopted when he was 5 and is now 13. Putting him through my addiction brought back all of his memories and distrust of his biological mother. He also has Attention Deficit Disorder, Oppositional Deficiency Disorder, and a trauma history. So we deal with a lot.

He gets very angry and says very hurtful things at times. We are working with counselors and positive reinforcement. It is hard for me because I don’t deal with my feelings well because I am an addict. I get emotional and start yelling easily so he does the same thing back to me. Through the power of God I am learning to listen and be patient, not reactive to him.

I am considering telling more of the friends I have met about my HIV status but I am still not there yet. Once you tell you can’t take it back, nor do I have control over who they decide to tell. This is a big fear for me, especially living in Conservative Missouri. There is not much in the way of supportive services here.

There is one place that does my case management, St. Louis Effort for AIDS. I get Ryan White funds through them which gets me by every month.

I am keeping my spirits up. I am starting a new supplement program to help my aging body. I don’t feel 50. I stay active, keep thinking positive and try not to think like my mother. lol

Hiding Behind the “Good Book”…

April 3, 2014

Sonya posted a new blog, Hiding Behind the “Good Book”…, on A Girl Like Me’s Voices from our Allies:

Why is it so hard to understand that getting infected with HIV/AIDS is possible and can happen to you?

Just because you saved and sanctified and running for your God doesn’t exclude you….yes, you!

You can remember when:

- You were sneaking and not listening to anybody, but only to the one who made you feel like you never felt before.

- You were so in love with the notion of being in love, you only wanted to be with them 24/7 and simply make love.

- The reality of being safe and being careful was clearly thrown out the window, because you didn’t want to mess up the moment!

Why is it so hard to understand that our reality today is that no one is talking about HIV/AIDS, herpes, or any other STI because that simply isn’t a cool thing to do?

So you rather sit on the pew and hide behind the big book or should I say the “Good Book”, and believe that your prayers are reaching heaven and you are simply…good!

Wrong. Let me interject for a moment or two, and just share with you some facts that many may wish I wouldn’t do:

  • Every 9.5 minutes, someone becomes infected with HIV in the U.S, and that could you be in the next 5 minutes.
  • HIV/AIDS cases have been diagnosed in every state across America…including yours!
  • An estimated 21% of people living with HIV are undiagnosed, so you never were tested…21% could include you how would you know?
  • Since the AIDS epidemic began in 1981, 1.7 million Americans have been infected with HIV…it’s knocking on your door…are you looking through the peek hole?

Why is it so hard to understand that getting infected with HIV/AIDS is possible and can happen to you?

Just because you saved and sanctified and running for your God doesn’t excuse your behavior!

So…stop hiding behind the “Good Book”!

My Name Is…

April 2, 2014

square sologirlI am invisible, yet you see me everywhere
I am grief and despair
I feed off ignorance and fear.
I am caution thrown to the wind
I have a beginning with no end.
I am anger, I am shame
I’ve spent fortunes
I’ve destroyed fame.
I like the old
I like the young
Even unborn babies
My work is never done.
I’ve been uptown
I’ve been downtown
I am your brother, sister
Co-worker and friend
They did not ask for me,
I let myself in.
I’m in your office
In every school
The local clinic,
That seedy bar playing pool
I make new friends every minute.
They can’t wipe me out
This is war.
I don’t care to whom you pray
I visit churches everyday.
I don’t care if you’re rich or poor
The color of your skin
Your ethnicity
Nothing matters to me.
I’m in your neighborhood
On your very street
I will be in your home
Part of your family
If you continue to ignore me
My name is HIV

Intro – posgirl77

April 1, 2014

posgirl photoYou can call me Dee. I am 50 years old an have a 13 year old adopted son. I was diagnosed in Atlanta on November 1, 1996.  I was having severe fatigue and just knew I needed to be tested for HIV. I have a substance abuse problem and while I never used a dirty needle (I am an RN), I was in recovery and having unprotected sex with recovering drug addicts in Ft. Lauderdale, FL. The medical field was just catching up to HIV in FL, and we still thought it was only gay men and Haitians at that time. We were so uninformed…

When I got my test results I don’t even remember what the man said to me or driving home. My whole life had changed in seconds. My boyfriend was a real jerk about the whole thing and tried to tell me I didn’t have the virus. I told my ex-husband, who was negative, thank God. He told me to come back to Ft. Lauderdale and he would hook me up with insurance, acupuncture and herbs and help me get better. I owe my life to him and I didn’t deserve it because I had left him for my jerk boyfriend.

My parents were hesitant. They were supportive but wanted me to move back with them to St. Louis to cut down on expenses as they were  supporting me. But they let me move to Ft. Lauderdale and people came out of the woodwork to help me. I found myself connected to a lot of amazing people. I began to physically heal and started on a spiritual journey to find myself. I was very lucky, many new meds came out that year and soon my t cells were in the 300′s not 84. There was no viral load test at this time. After 10 years of searching, I came to know Jesus Christ as my Lord and Savior. Life got good. I adopted my son through the foster care system when he was 5.

I began taking prescription drugs for back pain. My using got quickly out of hand. I lost my job due to my addiction and decided to move back to St.Louis to be close to my family, which has been a very big adjustment for us. It’s cold here!  I have managed to find health care but not the kind I got in FL. I am isolated, only my adult family members and two other people know I am HIV positive, after all this is Southern Missouri. I have great respect for those who are standing up and putting a face to this disease.  After 18 years, I am not able to do this. The prescription drug abuse took me to the edge and I went back to Narcotics Anonymous. I have been clean for 8 months. I go to meetings but have  not disclosed my HIV status. My son doesn’t know but he has other emotional issues from trauma from his first 5 years, and then my fall off into active addiction which made all his memories come back, so I don’t feel I can tell him just yet. But I do have faith in God and that gives me hope. I see his actions in my daily life. My life is so much easier when I let Him be in control. Today my viral load is undetectable and my t-cells are 1000, praise God.

Why Dee wants to be a part of A Girl Like Me: I want to blog for A Girl Like Me because I  am isolated and need to connect with others who know what I am going through. I also want to address HIV and substance abuse as I know it affects many of us. I hope my experience may help someone else escape the disease of addiction and learn to live with HIV. Someone told me “it’s not a death sentence, but it is a life sentence.”

AIDS Clinical Trial Unit

March 28, 2014

Kate image Hope Tatoo appI love writing my blog and truly enjoy the global aspect that it brings.  It has helped me grow more comfortable and accepting of my status.  Through this experience, I’ve been searching for a way to get involved locally.  I’ve reached out on several occasions to a local AIDS Service Organization only to be ignored each time.  I don’t know if they truly have no need for additional volunteers, or I simply didn’t meet their needs by being female.

While sitting in my doctor’s office for a routine appointment, I saw a pamphlet for the Community Advisory Board of The Ohio State University AIDS Clinical Trial Unit.  I contacted them via email and was surprised to hear back from them almost immediately.  The coordinator expressed enthusiasm to have me join their group and welcomed me with open arms.  I’ve now attended a couple of meetings and absolutely adore the people involved!

The Community Advisory Board reviews proposed HIV/AIDS clinical trials and provides input.  I like to think of it as providing my opinion in a non-scientific approach.  For example, I think about whether the study would be beneficial as a whole or would anything about this study deter me (or anyone else) from participating.  I’m naturally pretty geeky (I love learning and educating myself in any way possible) but this really is fascinating.  I’m thrilled about this opportunity and grateful for the people involved.