Togetherness – Stronger Together

Yesterday I was invited to join a Zoom call with some women from a support group we all belong to. At first, I hesitated joining in.

Since the call was several hours away, I went on with my scheduled activity. We had workers rebuilding our front deck floor.  It took 10 hours with breaks, etc. By the time the workmen left, I was exhausted. I had worn down, as if I had used the hammers and nail guns myself.

While I freshened up my hair and added a little make-up, I debated about not joining the call. I felt almost like crying, I was that tired or exhausted. My husband kept coming in to interrupt me to help handle the paying and saving goodbye to the young men. I told him I was preparing for something for myself. Finally, the guys left and hubby wanted to rehash the work, etc.

By this time it was past the 6:45 scheduled connect time. Again, I debated skipping the call. No! I am doing this. aSo I quickly rushed around gathering up what I might need, my phone, my laptop, my drink, a snack, a few things I wanted to show them. Whew! I settled on my bed, rearranged my pillows, my throw, and checked to make sure nothing was showing that I didn’t want seen. Lol. Gave my laptop a fast glance to see if I could quickly figure out how to use it for the call? No, I don’t think so, too complicated for my brain now. I clicked on that link and ….it tells me I have to download an app. Wth? This seems ill-fated from the get go.

Finally loaded, click link, enter number, password, okay…..what? It says the person is not ready yet. Lol. Lol. Lol. OMG.

Finally a face pops up…..wearing this strange looking GET UP!  Oh yeah, I know that face. Lol. Now I get it… nothing unusual here. Lol. Looking fabulous even in this funny hat, mask, and necklace.  Another face pops up. OMG, I know her too but what the heck is she wearing? Then another, and another. Wow! These gals really planned and here I thought I was prepared. Lol.

I think eventually we had 9 – 10 – 11 or so women log in to the Zoom meeting. I am not the best technical person so I only saw one face at a time, except for Mama and daughter, and they kept changing. Lol. One or two were only instant glances, then gone. Technical difficulties for a few and we lost them.

After all the greetings, hellos, and laughs at the get ups we started a real gabfest. Due to some previously unknown planning, one fearless leader asked what we’ve been doing while in “lockdown”? We discussed our lives and a few difficulties we’ve had. Thankfully no one has been down with coronavirus in our support group. There have been some family, more distant, suffer and survive the virus.

We were asked what we miss most during the stay at home requirements? Some really good answers. Most say family, going out in public, our friends, our group, and shopping (A woman’s 7th or 8th sense you know? Lol). Our little male mascot made an appearance and added to our fun. A very, very smart mascot he is too. A couple gals showed a few pets and we all enjoyed them.

We discussed our fears and worries over our health, our families, and COVID-19. It seemed like our worries and fears sort of matched one another’s. Some of us are all alone at home, and some have family and loved ones that need care as well.  We discussed worries about doctor visits or not going to a doctor. We talked about our stress and what is causing it even more. We talked about many things, but the connection was what was most important! At least it was to me. (I did speak to a couple other women that were on the call and they agreed how great it was. And the connection was needed.)

I’m not sure how much time was planned for the Zoom call but as I was one of the last to sign off,  I’d say 3 hours at least. Lol. (I am a bit of a talker.) And only ended due to a family call and needing to end our talk.

I really, really, really enjoyed this connection with “My Friend’s,” my support group, my sisters, and our little mascot “E”. The bond is strong with these women and I don’t know if anyone else can understand it, unless you have a similar bond with a special group of women or men.

For anyone sitting at home and feeling alone, feeling disconnected or afraid of COVID-19 or some other fear– “Reach Out.” Sound the alarm. If you only talk to “One” person you may feel less alone. You may feel happier. You may feel more loved or just love inside. It’s not an instant fix but it could lift your spirits a little and that sounds a whole lot better to me. I know I felt happy after the call and the “Connection” with my sisters. We are not connected by blood but by our hearts and spirits. ❤️

P.S. When someone I know, even if only on Facebook, loses a loved one, I will send them a link to a song. My go to is Michael Jackson’s “You Are Not Alone”.  It always makes me cry. I cry for every loss, every hurt, every sadness I or anyone else feels. I’m a softy on the inside of this old hard lizard skin.

From HIV/ AIDS to COVID-19

This pandemic brings me back 37 plus years to the dark days of HIV. As a woman living with HIV little was known back then, as little is known about the coronavirus, except we all know how we can stay safe from contracting this deadly virus! The scientists are making great strides on a vaccine.

We must all do our part by keeping safe and educating as many people as possible.
So, sisters, let’s do this ! We are all in this together and much better equipped with knowledge.
“Again, stay in and educate”

Read more…

IRS Launches New Way For People To Get Coronavirus Rebates

Arthur Delaney
HuffPost April 10, 2020

The Internal Revenue Service unveiled a new website Friday where people who don’t normally file tax returns can enter bank account information so they can receive coronavirus payments.

The new site is on IRS.gov. There’s a big blue button that says “Non Filers: Enter Payment Info Here.”

Since Congress passed a law calling for cash payments to most households in the U.S., people with low incomes… Click here to keep reading.

Interim Guidance for COVID-19 and Persons with HIV

Last Updated: March 20, 2020; Last Reviewed: March 20, 2020

This interim guidance reviews special considerations for persons with HIV and their health care providers in the United States regarding COVID-19. Information and data on COVID-19 are rapidly evolving. This guidance includes general information to consider. Clinicians should refer to updated sources for more specific recommendations regarding COVID-19.

Click here to continue reading.

Priming the Pump

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!

Judge Not! Celebrating Women & Girls Month

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.

 

 

Moving Ahead

Today is National Black HIV/AIDS Awareness Day, and as a community, I think it is very important that we understand the reason why we have to fight so hard to end the epidemic again HIV/AIDS.

As people of color, we are already fighting against the injustice of racial barriers, which increases the stigma of those living with HIV.

We wanted to share this straight-to-the-point blog by Venita Ray, a woman who has touched many lives. Click the image below to visit her blog. We hope that you will find the strength to speak out and advocate for yourself, your sisterhood and your community.  We want you to know that you are not alone and if you feel that you are in need of support, we are here for you. You can reach us at letstalk@rwhp.org.

Justice

 

“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