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

Wrap Your Arms Around Me! 

I’m getting excited about an upcoming conference with several of my friends and I will attend in a few weeks. It’s filled with so many old friends and we make new ones.

It feels so freeing to gather with so many people “just like us”.  A few hundred people doesn’t make me uncomfortable but envelopes me in warmth. Their arms are kind and loving.

The need to hide our status or health issues is forgotten and we can and do speak freely. So many people and so many friendly faces. It’s like a family reunion where we all may look different but we share a lot. We can catch up with old friends and share with new ones. And try to make all the “newbies” comfortable and welcome.

We cry over the friends we may have lost over the past year. We cry over the strangers we never had the chance to meet and now they are gone. Gone but not forgotten. We try to make sure each person is mentioned and we celebrate their life. I hope once I leave this world my name is mentioned at this conference too.

We attend workshops to learn new ways to make our voices heard. We attend to learn about medicines, side effects, government programs. We learn new skills and we get inspired by so many others doing just what we do.

We have a few guest speakers who tell us their stories and make us feel included. We even have some comedy and laughs.

We have lots of laughs and smiles are big. And that is what feeling free does for us all.

The meals are great. They offer us tasty food and the hotel staff treat us with the most respect. The free time we can spend on the beach, use the pools or go shopping. Of course, some just take a nap. Lol.

After dinner and the host’s presentation, we choose what to do. The nights are filled with activities as well as Karaoke, dancing, or just music. Sometimes the hot tub or a cool drink is all we need. Then off to our nice beds and sleep for tomorrow is another busy day.

I come back home usually exhausted but excited to share or try out new things I learned at the conference. Best of all is the friendships and bonds that were started or renewed.

HIV: Through a Different Lens

Testing positive for HIV is a hard pill to swallow, no doubt. As you come to terms with losing the life you once knew, questions race through your mind, “How did this happen? How could I let this happen? What am I going to do?” If you’re anything like me, you’ve probably been called a liar, have been shunned by “friends” and family, and have had job opportunities taken away- all from disclosing your status.

But what if you’ve been living with HIV all you life? The old life others have had to let go of never existed for you. I wonder if anyone ever stopped to think about the stigma for someone like me. For example, Is it easier to live with? Harder? How does a young child comprehend what HIV is? How does a child deal with their diagnosis, how does their body react to the medication? Do they internalize stigma much sooner or is it easier for the unformed mind of a child accept their diagnosis much easier? Are people born with HIV more likely to develop a resistance? When HIV is discussed, it’s typically geared toward newly diagnosed individuals. However I believe people like myself offer a unique perspective when describing their diagnosis and outlook on life.

I was five years old when I learned about my HIV status. I also learned from an early age how important secrecy was and how deep-rooted confusion and irrational hate could be… even from your own family members. You could say that I’ve never lived a “normal” life; judgment and stigma have always been unwelcomed friends of mine. But who ever lived a normal life anyway, right? While my life has been filled with many tribulations, I’m happy that I’ve been able to meet people who are compassionate and understanding. I’ve had a lot more time than most to come to terms with my diagnosis, and I have grown to understand that ultimately the world needs more education.

I understand that being born with HIV can tempt someone to harbor anger and blame, and that’s totally normal—I don’t blame you. Still, I want to show that just because of your diagnosis, you are not “different” and there will always be someone who will listen to you, who will believe, and who will accept you. The most important part is to believe that your life is not over and that you can make a difference in your life because the only opinion that really matters is your own. Look at me, the person who was once labeled by so many people. I’ve taken power into my own hands to label myself happy and proud of all that I am and have accomplished regardless of HIV: a young woman turning 27 in August and a son that is healthy and HIV-free, could you blame me? 🙂

Voice of the Youth

As the grandmother of the author below and a person living with HIV for 35 years, it is very important to recognize the voice of our youth on different issues that they are passionate about. They are our future leaders. Whether they are fighting for people living with HIV, stigma, discrimination, or better education, it is crucial that we hear what they have to say because it’s their future we are talking about. This is the way to get our youth involved: by letting them have their voices heard. So please continue to read what this brilliant young lady has to say about some of the issues she fights for.

 

Girls Stand Up

Young women everywhere are limited to certain things whether it be sports or something as simple as working. People may think, “So what? That’s how it’s always been.” My response to those people is that it doesn’t have to be like that anymore. We can stand up and make a change for what’s right.

For example, lets take a school sport: basketball. The boys’ team always has nicer uniforms and they always seem to be more praised. However, when you look at the girls’ team, hardly anyone attends the games and their uniforms are probably the same as the year before.

Well here’s what I think about the treatment we get compared to the boys. We can work and play as hard as they do, so what’s the big deal! Us women should be able to have the same opportunities as men—we are just as strong as they are, maybe even stronger. Just because we look weak and small doesn’t mean anything. Women everywhere should take a stand and show the men in this world what we are made of because we are more then just a pretty face. We should be the voice for other women, but most importantly be the voice for ourselves. Stand for what you believe in and do whatever it takes… just be you.

Now for us teenagers (young men and women), we all know what’s been happening in our schools. We’ve lost lives and now we are scared of what’s going to happen next. I know we all ask ourselves questions like, “Will I be next? And what are the adults doing about it?” Nothing is my answer. In my opinion, I think we need to get up on our feet, stand up, and speak up for what we believe in—don’t be scared.

I just read something that a girl posted. She’s trying to get into a better school, of course for better opportunities, but it’s hard because now the school is taking steps that are unnecessary and she said, “EVERYBODY should have the right to a good education and GOOD Resources!! But, right now the school system is only worried about MONEY, giving teachers guns, and the school population makeup. PRIORITIES HAVE GOT TO BE STRAIGHTEN OUT in the School system.”

Here’s what I think about that: she is right, but what about us? The school system is worried about giving the teachers more safety—what about OUR safety? What about OUR voices? I see teens fighting everywhere for a change and the administration is not budging. So what are we supposed to do? Well here’s something… don’t stop fighting for what you think is right. Be the change you want in the world, but don’t change because of the world. All it takes is a leap of faith and a little bit hope to keep fighting.

Hooray, it’s National HIV Testing Day! 

So why is it important to get tested? There can be so many different reasons NOT to go get tested and the reality is many people don’t believe that they are at risk for an HIV diagnosis. You may be thinking, “I don’t participate in that kind of lifestyle, I work on Wall Street, or I’m married, etc.”

But you see there’s this stigma surrounding HIV- that diagnosis is directly related to behavior and lifestyle choices -as if some people do not “qualify” for diagnosis and are immune to HIV. This is not the case. The ugly truth is almost everybody is at risk for an HIV diagnosis. If you’ve ever had a sexual relationship, are currently in a sexual relationship, are pregnant or planning to become pregnant, you might be are at risk. Understand that HIV is a health condition, not a punishment for behavior.

Now let me ask you a better question… Are you ready to go and get tested? If you’re answer is no, then I’d say that’s even more of a reason to get tested for HIV. The bottom line is it’s better to know than not to know, believe me.

There are lots of ways to prevent the transmission of HIV. You have PrEP*, condoms, abstinence, the list goes on, but the very first step is knowing your status. When you don’t know your status, you run the risk of transmitting HIV to others, or even worse, dying prematurely from lack of necessary treatment. But on the flip side, when you DO know your status you can begin treatment sooner and with consistency, live a long, healthier and productive life, and prevent transmitting the virus further.

So why not get tested or retested? When we examine the issue at its core, what’s really holding people back from knowing their status is fear. Please know that it’s absolutely normal and okay to be afraid, but you can’t let that stop you. It’s your health and potentially your life at stake—you have to take control!

Someone once told me, “If I had known my status earlier, I would not have been diagnosed with AIDS. That’s what made me get tested.”

The bottom line is, it’s not all about you. Think about your friends, family, and partners; they are affected when you don’t know your status and we’re trying to get to zero! Now that I know my status, I would love for you to know yours as well because Silence=Death. So, don’t be afraid and don’t be ashamed. Get tested, everybody’s doing it! 🙂

*PRep is a medication for those who are not living with HIV, but are at risk. It is said to be estimated at 99% effective when taken as prescribed, in preventing the transmission of HIV

Local Testing Sites-Alachua County:

Not in the Gainesville/ Alachua County area? Check out the website to find a testing site near you: https://locator.hiv.gov/

Some of the events will feature counseling and testing, education, free condoms, and referrals to other resources in the community that deal with HIV/AIDS issues.

Wednesday (6/27/2018)

GRACE Marketplace
3055 NE 39th Ave

Time: 8 a.m.-12 p.m.

The Heart of Gainesville Thrift Store
125 NW 23rd Ave.

Time: 3-6 p.m.

HealthStreet
(Please call and schedule an appointment and be sure to arrive 30 minutes earlier if you are not already a HealthStreet member (You must become a HealthStreet member (FREE) for the free testing)

2401 SW Archer Road
Time: 11 a.m.-5 p.m.
Phone: (352) 294-4880

Friday (6/29/2018)

University of Florida Health Family Medicine
1707 N. Main St.

Time: 5:30-8:30 p.m.

*****************

Citrus County:

Wednesday (6/27/2018)

Florida Department of Health
3700 W. Sovereign Path, Lecanto, FL 34461
Time: 9 a.m.-3 p.m.
Phone: (352) 527-0068

“As an advocate for Women living with HIV, this is very close to my heart. In this day and age, this test can change your life! You can live a long and great life as with many diagnoses. We must end the stigma attached to so many medical conditions.”

SaveSave

Suicide, My Dirty Little Secret

I live each day with a dirty little secret. Suicide. My sister and I were only 13 and 17 when my mother left; she died just a day shy of her 35th birthday. She was hospitalized after taking some pills three days prior. I lived over 100 miles away. I called that morning to check her status and a nurse said, “Hold on, the doctor wants to speak with you”. Shortly after, a stranger came on the phone and said, “Your Mother just died.” “Why? How? She was listed in fair condition for the past three days,” I asked. I had so many questions, but it was the stranger’s next response that would forever change the world my sister and I have come to know.

“Her heart just stopped.” I was married and five months pregnant when she died, and my sister had been sent to me by greyhound bus two days before. Handling all of the details of hospital releases, funeral homes, etc. is a lot for anyone, but especially for young people. My Aunt who was 27 and seven months pregnant helped my small family deal with it all, and my reliable young husband supported us.

Guilt! Survivors always feel guilty.

Guilt kept me from making that final choice a few times. Since those early days of my life there’s hardly a day that goes by that I don’t think about suicide in one form or another. My Mom’s, my own, and people around me. My dirty little secret. But I never want my children to suffer the way I have, and the way my sister has suffered. My Mom missed a lot by leaving us in July 49 years ago. She never met her grandchildren or her great grand children. I never want to miss out on that special time of life.

When I was first diagnosed with HIV I was in a fog, but in facing reality I knew that my dirty little secret would keep me company and would always be there for me. It was an “out” if I ever couldn’t handle it, or if my family abandoned me.

Do I consider myself suicidal? No!  But I think I understand how or why any person takes that escape choice—it’s like a hidden escape. Someone once said it takes more courage to live than it does to die and I believe that. I’m a strong, stubborn fighter and my courage has held me here for many years. Suicide is not an easy way out, it’s final! And there’s no coming back! So I’ve decided to fight the fight a while longer. Besides, there may be some people who’d like to see me gone and I’m not going to give them their wish. Lol.

Talk to a  counselor—A 24-hour hotline:   (800) 784-2433

Additional Reading: My 10-Step to-Do List for Enduring Depression, Josh Middleton.

http://www.thebody.com/slideshows/my-10-step-to-do-list-for-enduring-depression?ap=818

 

Happy Holidays – Celebrate Yourself!

 

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!

Making Connections as a Pen Pal

“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.”

Moments of Gratitude

“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.”