Category Archives: Inspiring Stories

My Journey: It Could Happen to Anyone

As a woman living with HIV, I have been through a lot in my life. As someone who was born with the virus, I grew up taking medicine, going to numerous doctor appointments, and getting stuck with needle after needle. This was normal to me, as I never had a life before my HIV diagnosis. Being born with HIV puts you in a different category from those that acquire it later in life.

I was born in the ’80s, at the beginning of the AIDS epidemic, and the virus was still so new that people didn’t really know what it was or how it was transmitted. At that time, they had no medicine to treat it, and I was not expected to live past the age of four years old. My birth mother had her own problems and so almost immediately after I was born, I was taken from her and placed in foster care. Thankfully, I was placed with a foster family that would become my forever home. Growing up, I never knew why I had to go to so many doctor appointments or why I had to take pills every day. Most of the time, I would find ways to not take my medication because it made me feel sick and I felt better without it.

My parents would set out my pills for me each day and I would flush them, throw them away, and do everything with them but take them. I ended up in the hospital for a month with stomach colitis because of the inconsistency with which I took my medication. Seeing me struggling to take the medication and my poor numbers as a result, my parents finally sat me down at the age of 12 and had the family therapist tell me my HIV-positive status. At that time, I did not really have any idea of what HIV was, so I immediately told my two best school friends. I was lucky that they never told anyone, or if they did, I never heard about it or was ever treated any differently. As I grew up and went on to high school, I started becoming aware of how negatively those living with HIV were perceived. I made the decision not to tell another living soul, and I did not. I still was not taking my medication consistently, so I had no trouble hiding that part of it. If I spent the night at a friend’s house, I would not even worry about not taking my medication. My friends would sometimes ask me why I would not donate blood when they were doing it, and I would just tell them it was because I was afraid of needles. I kept quiet about my status for the rest of middle school and all through high school.

To this day, those classmates and friends that I grew up with, still don’t know that I’m a woman living with HIV. This unique perspective is one of the many factors that have shaped me into the person and woman that I am today. I have always been motivated but became even more so after the birth of my son, who is negative. Being a single mother, while also living with HIV, has brought out a strength in me that I did not know existed. I grew up in a stable, loving environment and this is the kind of life I am motivated to give my son.

I recently graduated with my master’s degree in Business, with a focus on Healthcare Management. It was an online-only, 2-year graduate program, and in those two years, there were many times when I wanted to give up and throw in the towel. I stayed up late to work on assignments. I was exhausted, nervous and stressed, etc. But I put my nose to the grindstone and kept pushing forward because I knew, in the end, it would be worth it. I would be one step closer to achieving the goals and dreams I had planned out for my son and myself. During the two years I was in school, I still had to keep up with taking my daily medications, going to my doctor’s appointments, getting labs drawn, and working a full-time job. There were some nights I would be so busy with my son and doing schoolwork, that I would forget to take my medicine. On other nights, I simply wanted a break from swallowing pills, so I would make the conscious decision not to take them at all. During all this time, my viral load never increased beyond undetectable, but my CD4 count did drop some, which I attribute to the constant stress and exhaustion of it all.

Being a mother, single or otherwise, is definitely stressful in its own right. But, when you add school, living with HIV, making sure to eat healthily and exercise regularly, working, and so on, to it, everything becomes one big melting pot that often threatens to boil over. I have always found ways to push through the hard times because I have had no other choice. I have a little person depending solely on me to make the right decisions. I am thankful and appreciative to have the support and generosity of great friends and family, which is not something that a lot of people have. Their love, empowerment, and inspiration, it helps motivate me more to live a life that is successful, rewarding, and courageous.

– Crittlecakes

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.

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

 

A Woman Living With HIV

My name is Pattie and I am living with HIV since 1992. It’s not easy living with this disease,  but you can live a pretty normal life if you want it. You have to work at it. You have to be your own advocate -no one will lead the way for you. I think the more you worry about the disease- it the harder it will be for you. Try to live a normal life and make sure you take your meds every day -at the same time everyday -no matter what. There were many times in my past that I would party all weekend and didn’t eat- but I still took my meds at the same time and that is one reason I believe I am still living today.

 “Your tracks will never end as long as you go to meetings and make friends.”

The support groups really helped me to understand what my body is going through. You are not alone -there are a lot of women living with HIV. You have got to have the will to live when things start to go wrong with your body. My friends from the groups, that I go to, really help me in life- where to get help with any problems that I have. Talk to people in your situation who are HIV positive.

For the first 20 years when my husband and I were diagnosed, we didn’t tell anyone. So all of those years we never talked about it unless there was an article in the paper or we had a doctors appointment. I didn’t know anything about HIV- only that it kills you. When the word HIV or AIDS came up I would freak out and leave the room and conversation because it wasn’t good things -it was always bad things people said. All the people were so uninformed- it used to get me so mad. They always talked down about people living with HIV. Some doctors didn’t even want to touch me or take care of me- they looked at me like I had leprosy. But when I found out about the support group on HIV, I was the first one there. I wanted to know and learn about everything that went along with the disease.

I still have a lot of life in me and many good, good friends that have helped me get to this point in my life. I am Happy and most of all UNDETECTABLE of this disease because I always took my meds every day at the same TIME.    “Your tracks will never end as long as you go to meetings and make friends.”

 

Caring For An Adult Daughter

 

It’s a hard job being a caregiver for an adult child. Sometimes it’s harder than when she was a little girl.

My daughter suffers from “Sickle Cell Disease” and had a severe stroke when she was only 20. Before that she was a college student and very independent. Her stroke made her almost helpless. Thankfully she survived and grows stronger everyday.

I had to take charge of her care at home. I learned her medicine schedules, side effects, when to re-order her meds and pick them up. I cook her meals at her scheduled times and what doesn’t interfere with her meds. I also cook what she likes and I have to refuse some sweets and snacks that are bad for her.

I have to follow her doctor’s orders, keep her appointments, and schedule around my own doctor requirements.

She receives some outside help with a caregiver aid however I am still her main caregiver and support. I bathe her and take care of her personal needs and put her to bed.

My social life is almost non-existent but I try to get some much needed time for myself.

My charity program is a time away and I attend my support groups when I can.

My own health is not good but I push forward for the needs of my daughter.

That is what it means to be a Mother. I always answer to “Mommee, Mommee”.

 

It’s Me Again

I was diagnosed in October 2009. I was given my test results in Jan. 2010, my CD4 was 12 and my viral load was over 157,000. I was started on Isentress twice a day plus Truvada once a day. Three months later my viral load was undetectable (under 75) and my CD4 was 57. I have posted my continuing growing results on LTAI’s Blog before. Now on Jan. 9, 2017 my CD4 is 445, my CD8 is 473, and my helper cells are at 28% (CD4-CD8 Ratio). My health continues at a pretty good condition for an old gal of 65 years young. My health issues, which I had before HIV, have not
worsened, such as my IBS, acid reflux, etc. I have some heart issues (at 11-12 years old and had rheumatic fever) and suffered a mild silent heart attack 18 months to 2 years ago. I suffer some mild-hard chest pain and have been on continued long- acting nitro med (Isosorbide). I take blood pressure medicine and anxiety meds and both are said to be related to my HIV and other meds. However at 65, in today’s world, I think I would be on both even without HIV. It’s always important to see our doctor, take our meds and try to stay positive and active when we can.              

I attend my “Let’s Talk About It” support group monthly and attend other advocacy meetings whenever I can. I talk with my support and advocate friends often, and I send Pen Pal letters to 5 other women living with HIV who I help to advocate for. I
also have a special email pen pal in Croatia, who is also living with HIV, that I email and have for almost 7 years. I feel this support and advocacy helps not only me but the other women as well. I am a member of a newly formed Leadership group for women of our communities. We have to remember that if we don’t advocate and fight for ourselves, we may get lost in the shuffle. Today’s political world is crazy and we must not be forgotten or pushed aside. We can’t allow someone else to make choices for us, without us!

Remember the words of Elizabeth Taylor:
“I Will Not Be Silenced. I Will Not Give Up. I Will Not Be Ignored!”

 

Conquering Your Inner Enemy

We all feel at timpics-for-natalie-blog-2es that we are defeated by our past mistakes or past experiences, but we have to believe that we are overcomers! And, no matter what happens and comes our way we will defeat it.

  • These are some things that help me to overcome my inner enemy.
    Changing my mind to what can go right instead of wrong

    1. If I am thinking that am going to fail at something, I tell myself I will pass.
    2. Expecting the best will happen when my family and I get together.
    3. He or she will accept me, as I am, when I tell them my diagnosis, and if not, it is not the end of the world, there is more life to live. They’re missing out, not me, I understand that rejection is God’s protection.
  • Using affirmation:
    1. My self-esteem is high because I honor who I am.
    2. I am grateful for my healthy body. I love life.
    3. As I forgive myself, it becomes easier to forgive others.
                                      – Louise Hay  
  • Affirmation:
    1. I am beautiful.
    2. I will succeed
  • Using humor and fun around someone that makes me happy.
    1. Laughing
    2. Skating
    3. Shopping
    4. Going out to eat.
    5. Fishing

Remind myself that the negative thought that I’m thinking is only negative; it has no power other than what I give it. When I give it power, it controls my destiny.

Watch your thoughts, they become words.
Watch your words, they become actions.
Watch your actions, they become habits.
Watch your habits, they become your character.
Watch your character, it becomes your destiny.
                                                              -Lao Tzu

I surround myself with positive people, who are headed in the same direction as me, or who are already there. Don’t be afraid to jump into something new, live outside your comfort zone. Enjoy life!