Many times I’m one of the first to speak up. I don’t feel I do that because I know more than others. I do it because so many hesitate to speak up. So maybe I speak up 1. To fill the gap. 2. To get the ball rolling. 3. To prime the pump.

I mean if you pour a little water in the top of the pump, then try pumping you get plenty of water. Right? My analogy of the pump comes from my childhood when my grandparents only had a well and an outhouse.

We had to pull up buckets of water and then they moved up to a house which actually had a pump in the kitchen. (Still without indoor plumbing for a bath tub or a toilet.) When the pump wouldn’t bring up any water we had to prime the pump with a cup of water. You had to make sure to have that cup of water or we had to go outside and pull up a bucket of water. It didn’t seem too long without pumping before it would need primed again.

I thought about many times at a meeting of several to many people I am the first one to raise my hand and speak up. It’s not because “I know more” I feel it’s because “I’m priming the pump”. I speak up and something I said makes another person think of something to add or in another direction. My words can get the ball rolling, the ice breaker, or maybe overcome someone else’s fear of speaking first. I have many ideas, and not always a favorite, or maybe something someone else is thinking or their experience. I’m not afraid of disagreeing with the main speaker but I try to be polite whether I agree or disagree.

You don’t have to be a good speaker to speak up. It’s your thoughts, your feelings, or your own experiences.

We all come from different walks of life. We all have our own stories and experiences. Don’t think “no one” wants to hear your ideas or thoughts on any subject. Great minds think alike? Great minds also disagree but great things come from people with many ideas and experiences when they merge them together.

So be that “Primer” and Prime The Pump. What’s the worst thing that could happen? You wouldn’t get water. I don’t think that would ever happen as so many people have plenty to say, they just couldn’t find the words until “You” spoke up!

One of my favorite things that I say is “Speak Up And Speak Out”. And that can apply to advocacy or everyday life.

Don’t be afraid of being different, of being laughed at, and never be afraid of being wrong.

There is no wrong words but there’re many things never being said. So “Prime That Pump”. You never know what comes up could be Liquid Gold!

The Judge Not! Campaign was a big success! Even though we have a long ways to go, it was a start to reach a part of our  community that we have not dealt with because the stigma in the church community is so heart breaking that it is not an easy task. But someone has to do it, so why not us?

We say we are advocates and we want to see a change. What better way to make a difference in the the lives of people living with this health issue than to continue to stand up and advocate and be a voice for the voiceless. One way to end stigma is through community events. There are different approaches to being an advocate and it doesn’t matter how you choose to advocate as long as you have a purpose, the outcome will be great if you believe what you’re doing will cause change.

On March 9th, 2019 there was a change that took place in the community. Let’s Talk About It had a community event to celebrate Women & Girls HIV Awareness Day. The event was “educational, powerful, and fun, it brought unity to the community. It opened the door to other community establishment in our area” (M.E). We had the support of local politicians, pastors, artists, media, and community agencies. There was HIV testing, vaccines, and health screenings taking place and people were still getting tested when the event was over. To help end the stigma of HIV we gave some people hope and that’s what it’s all about.

Hope, tells people its not the end, there is life after HIV. It gives people an expectation, you’re expecting something to take place, a change to take place, a change in the stigma of HIV. It allows people to be free and to show you don’t need to be afraid to be who you are, to love yourself, and to accept yourself no matter your health issue. This is why you have to believe in the work you’re doing. The change may not happen in a day, but it will eventually happen.

“Not everything that is faced can be changed, but nothing can be changed until it is faced” –James Baldwin.

“It was another way I could be an advocate and reach out to a different part of my community where stigma has been the greatest.”

I first got involved with the LTAI testimonial media campaign, project (Judge Not!) two months ago. I thought the project sounded like a great idea because it was another way I could be an advocate and reach out to a different part of my community where stigma has been the greatest. Our hope was that the fotonovelas would help to reduce the stigma experienced by people living with HIV by educating others who have not been informed about the virus. My overall goal was to let people know that no one is exempt, that we are all affected by HIV.

We reached out to the church community to let them know that we felt that this is an issue that has been ignored and it seems as if the church community is afraid to talk about it. But why not talk about it because, it’s here and it does exist? The Word of God, John 10:10, says that the enemy comes to steal, kill and destroy and how does this take place—by lack of knowledge. It can be hurtful when someone enters a sanctuary and is judged because of their health condition. People come to church to be healed by the Word of God and to receive an inward peace. It should be a place for a life-changing experience, but sometimes I feel as if the community doesn’t have any compassion because of the stigma

“We hope to break the barrier of stigma and open up a new door in the church community to allow people to know they are not alone and its okay to be free.”

People have to understand that HIV is a health condition, just as if it were cancer or any other health issue. There are people sitting in the church dying inwardly because they are afraid to come out as living with HIV. They have a condition and want someone to talk to but they have no one to talk to. So by being a part of this campaign, we hope to break the barrier of stigma and open up a new door in the church community to allow people to know they are not alone and its okay to be free, it should be okay to talk about it in the sanctuary. I want them to know that a lot of times people want to be accepted, but it starts with accepting yourself first.

What I enjoyed the most about making the fotonovelas was the joining of many people from the community, it wasn’t just one voice, it was many voices, thanks to the participation of religious leaders and women from the Women’s Leadership Initiative joining the women of Let’s Talk About It. We were able to develop the stories by looking at the issues from different perspectives. It wasn’t just any one person’s issue, it was an issue of justice.

Have you done anything in your community to reduce stigma? Let us know in the comments below.

I felt like writing and updating my CD4 numbers. Then I thought “How many people know their numbers can and will fluctuate while on HIV meds?”

 Maybe our life is like a merry-go-round too. Around and around our health issues seems to go. We go up, we go down like the horses on the children’s ride. One thing gets better and something new starts or an old issue flares up.

 I didn’t know it until it happened to me. And it can be a shock, thinking you’re sliding backwards. It’s like being on a roller coaster UP, DOWN. UP, DOWN! And it can or will happen often to many of us with HIV. 

Isn’t it fun living with HIV? It may not be fun and games but it’s better than the alternative which is death. We’re so lucky to live in the new times of surviving HIV. The new medicines, new ideas, and new treatments. Thankfully most of our doctors are educated or can be educated about the new medicines and treatments.

I got side tracked now back to my new CD4 numbers. Mine have dropped a little bit again. I was at 513 in Jan. 2018. My CD4 now is 433 for June 2018. My viral load is still undetectable, less than 10, and my percentage at 28%. My doctor once told me the percentage is more important than the actual CD4 or T cell count. 

 I’ll add this explanation I found online to help some to understand this percentage importance. I googled “percentage CD4 numbers” and found answers to often asked questions there. It’s a little confusing but please ask your doctor to explain it well enough. That is the most reliable information

The CD4% is a more stable marker than the absolute CD4 count. The CD4 percentage refers to the percentage of total lymphocytes that are CD4 cells. If your test reports CD4% = 34%, that means that 34% of your lymphocytes are CD4 cells. The average normal CD4% for HIV-negative adults is about 40%.

What is the normal range for CD4count?

As HIV infection progresses, the number of these cells declines. When the CD4 count drops below 200, a person is diagnosed with AIDS. A normal range for CD4 cells is about 500-1,500.

 Find more answers on this link. https://www.hiv.va.gov/patient/diagnosis/labs-CD4-count.asp

As I posted above it’s a roller coaster. It’s a merry-go-round. I guess we could say it’s an amusement park or a circus. The main thing is, it’s our life and most of the time it’s not fun. We need our “sisters”, our friends, our support circle around us and close. We’re a “family” and we’re in this together. We can laugh together and we can cry together. The important thing is “we have one another.” We Are Not Alone. Reach out and you’ll find one of us

The holidays are coming, which means that everybody is probably stressed out. When you are living with HIV, this can be an especially hard part of the year. To get through it, we really have to try and relax and worry less. Being stressed has such a bad impact on our bodies, and it can make us sick and also unhappy. For those of us living with HIV, it can be really hard to stay positive- but there is nothing more important than being optimistic.

“Some of the things I focus on are the beauty of being with family, being able to go out and do things with friends, the beach, the fresh air, my plants and my animals that I love so much.”

Because of that, I’m trying to find practical ways to be more positive and in control of my own feelings. It can be very exhausting to be sick all the time, especially during the holidays. As bad as we feel, we are still so lucky to be on this planet. So, we have to try and be grateful and mindful of the little things. When we talk to people, we have to focus more on the awesome things about life. Some of the things I focus on are the beauty of being with family, being able to go out and do things with friends, the beach, the fresh air, my plants and my animals that I love so much. It is way too easy to sit on the couch and feel bad, so I push myself to get out and take advantage of every single day.

“…You need to try to give yourself something! Have a positive outlook and celebrate yourself!”

In 2018, focus on YOU! Don’t worry about everyone else. You have to focus on yourself. In order to get through the holidays, prioritize yourself. This season is about giving, so you need to try to give yourself something! Have a positive outlook and celebrate yourself! Wake up and be thankful that you’re here. We are so lucky to be here. Think about the things you love that make life beautiful. Try to get out. I am excited to get out on the water, to kayak, to do yoga, and walk around the yard. There are so many amazing things in life to enjoy. When I’m at home, I am thankful for the quiet and the peace that surrounds me. I enjoy hearing the birds in the evening. I go out right before sunset and talk to my plants, listen to the animals. Every night I want to go to bed thankful and happy to be alive.

Happy Holidays and here’s to a great New Year coming up!

“Being a pen pal helps me as much as it helps the other person,” she explained. “I can take that and use it.”

Based on many of the conversations we have had with the women who participate in our Let’s Talk About it Sisterhood Pen Pal program, it seems like one of the hardest things to deal with when living with HIV is the isolation and alienation that women are often forced to deal with. Our program seeks to break down some of these barriers of isolation, but it can go so much farther than that. Many women make amazing and profound connections between their roles as pen pals and other justice work they are involved in.

“You learn that you can’t give up. No matter how bad what’s happening is.”

I am thinking, right now, of one specific woman I spoke with who linked her pen pal-ship with work she is doing and has been doing for incarcerated women. She drew fluid connections between these two spheres of her life. She discussed the connections she makes with women currently incarcerated, and how it “means so much to hear from someone who has been in the same position…it’s the power of reaching out to strangers, who maybe you will never meet, but are in a situation that you know. That’s so strong.”

She discussed how she draws power from her role as a pen pal and applies it to the other work she is involved in. “Being a pen pal helps me as much as it helps the other person,” she explained. “I can take that and use it.” She talked about the power of resilience and persistence that women living with HIV and women trapped in the prison system have to learn. “Being a pen pal, or being there for someone who just needs it…that’s huge. You learn that you can’t give up. No matter how bad what’s happening is. You keep up.”

“We are only given today and never promised tomorrow.”

Yesterday we spent two and a half hours at an amazing concert. It started with Kenny G, then Adele, next was Celine Dion, then Barry White, and finished with some Frank Sinatra. It was the best time we’ve had in months if not years. It was extra special.

Now I’ll tell you why it was so special and the music was so varied. We were bedside visiting my 87-year-old Mother-in-Law at a nursing home. In July she suffered a massive stroke and the room is her home now. The stroke sped up the Alzheimer’s and dementia that she was living with for the last several years. After her stroke she didn’t know her name or recognize her five children or other family for days. She did start to recognize familiar faces but couldn’t match a name to a face. Months later, she still asks for ones not there and sometimes they are but she doesn’t know them. She slips back into childhood and asks for Grandmother, Grandfather, or other long gone family members. She at times thinks her children are those grandparents.

So the music was so special because my Mother-in-Law smiled, kept time with the music, and tried to sing a few words when she recognized the song. She told me one time “I’ve heard this before.”

“Her eyes were lit up and she was really enjoying herself.”

Seeing her so animated made us happy as we turned away to hide the tears. She lost the use of her whole right side and seeing her left foot moving to music and her head or hand bobbing was wonderful. Her eyes were lit up and she was really enjoying herself.

I had been looking for the “perfect” music player or boom box and suddenly decided yesterday to just use my phone and watch her reaction. Oh my God! She would keep her eyes on my screen until she’d look up and smile at one of us with her shining eyes. I was wrong to wait so long.

I know this is not my usual blog or subject on this blog group but I wanted to share my family’s experience and to remind us all of that quote: “We are only given today and never promised tomorrow.”

“I hope I’ve changed her life like she has changed mine, and I feel like I probably have”

Being a pen pal holds a different meaning for each woman who takes on the role. Through the Let’s Talk About it Sisterhood Pen Pal Program, women can explore their unique needs as individuals and foster friendships that help them address these needs. For some of our members, a pen pal can help ease a sense of isolation or loneliness. For others, a pen pal can serve as a boost of excitement or support.

One woman who I spoke with told me how her pen pal friendship is a release for her. She lives an incredibly busy life and is often swamped with everyday duties and caregiving work. She described her experience as a pen pal as something that lets her step away from the chaos of daily life; something that forces her to find moments for herself. Her pen pal gives her advice, shares resources and provides wisdom. “I love having her because she has been through it longer than me. She helps me out a lot. It’s like I have somebody different outside my house, and my world…it’s really an outlet.”

“She just gets me,” she said. “She’s really just a good friend. It’s like someone you haven’t seen, but you can rely on.”

She expressed a deep sense of love and commitment to her pen pal. and told me about the connection they have. “She just gets me,” she said. “She’s really just a good friend. It’s like someone you haven’t seen, but you can rely on.”

We also discussed the reciprocal benefits of having a pen pal, and she said that she feels like she probably adds a lot of positivity to her friend’s life. “I hope I’ve changed her life like she has changed mine, and I feel like I probably have,” she said. “I feel like I cheer her up a lot. I’m kind of like her cheerleader, you know? We just put in a lot of work to explain how much we appreciate each other.” And when I asked her how she would sum up her friendship in a few sentences if she had to, she laughed and told me, “Well, she’s so sweet! I feel like she was picked out of the candy jar. I love her to death.”

“It is not every day that you encounter a friendship that has had the power to transform someone’s life”

It is not every day that you encounter a friendship that has the power to transform someone’s life. And it is even rarer that these types of friendships happen between near-strangers who live miles apart. However, when I interviewed one of our Let’s Talk About It Pen Pals this week, that is exactly the type of beautiful relationship I discovered.

I spoke to this inspirational woman on the phone after she attended the OASIS Positive Living Conference, and she shared with me her journey living with HIV and the beauty of her experience as a pen pal. Through a stunning twist of fate, she actually got the chance to meet up with her pen pal and the rest of the Let’s Talk About It women at the conference. She happened to be talking to an LTAI member about being a pen pal, and this member mentioned that conversation to someone else, and then the women all pieced the information together. This was the pen pal of somebody in LTAI! It sounded like an extremely emotional and touching experience, and by the end of the weekend she had inspired the LTAI group so much that one of our women spoke up and talked about how powerful the whole meeting had been.

I asked her what it means to be a pen pal, and she told me that it means the world. “It’s something positive you can rely on, when it feels like everything else is going wrong,” she explained. “When you live with HIV, you have to be positive, and having my pen pal makes me stay optimistic.” I asked her to expand on that, and she told me about the feeling of having a difficult day, and then going to her mailbox and finding a package filled with loving, unique gifts. “It’s very optimistic, and it just helps me feel good about myself. I also pass these things on to other women. It’s like passing on little pieces of positivity.”

“…describing the growth she has experienced from a shy, reserved person into somebody who is passionate about expressing herself, networking, meeting up with other women and sharing resources.”

We discussed the strength that she has gained through this program, describing the growth she has experienced from a shy, reserved person into somebody who is passionate about expressing herself, networking, meeting up with other women and sharing resources. She is goal-driven and learning how to speak up and advocate effectively for herself and others. “Doing this with Let’s Talk About It is just inspirational,” she said, “and it reminds me always that I’m not alone, you are never alone.” And when I asked what her current goals are, she happily told me “Well, hopefully one day I can get out to a meeting and join you all. That’s something I’m going to grab in the future.”

“Writing to her pen pal, and receiving letters in return, is a way for her to ‘pass on’ happy thoughts that she has towards herself and others.”

Through the Let’s Talk About It Sisterhood Pen Pal Program, women are able to reach out to those far away from them and give and receive uplifting, positive messages. Oftentimes, living with HIV can seem overwhelming, negative, and isolating. However, through the interviews I have been conducting with women who are a part of our Pen Pal program, I have been honored to witness some incredibly positive and optimistic moments.

One woman in particular who I spoke with showed me the sheer beauty of having a friend to write to. She was so bright and lovely when we chatted, and very happy to answer my questions with simple statements like, “Well, I just love having a pen pal!” She told me her favorite part of the experience was the simple, fun nature of the relationship. It didn’t add any stress to her life and instead was an uplifting, light thing that kept her upbeat. Her and her pen pal communicate about once a week and they send each other poems, bookmarkers, inspirational quotes, and share pieces of wisdom they may come across throughout the week. “I wrote her this little poem this week,” she told me, “and I just can’t wait to see how much she loves it! I know she’s going to love it.” Writing to her pen pal, and receiving letters in return, is a way for her to “pass on” happy thoughts that she has towards herself and others.