Category Archives: Lessons Learned

A Mother’s Love: Living with HIV and Caregiving

Inspiring Stories, Lessons Learned, Support,

My daughter had graduated from high school and was preparing to become a nurse, when she suffered a stroke from complications of sickle cell anemia.

When my daughter first came home from the hospital, it was very rough on me because I didn’t get the proper rest that I needed. In the beginning, I did not have any help and I realized that to make it easy for me, I had to have a plan.

I managed my time by having a calendar and writing down things I had to do throughout the day. For example, having a schedule for what time I had to do things for myself and her, including both of us taking our meds. I started my day at 6:30am. I would get up, take my shower, and get myself ready. By 8:00am, I needed to have these things done because, from that time on, my focus was on my daughter. She needed to have her breakfast, medication, and bath, and then I had to make sure her room was clean and that lunch was prepared. I had to be up throughout the night and all day—and just be on top of life itself. I thank the Lord that my daughter had Medicaid so that I was finally able to get home healthcare for her, which gave me a little relief. They helped out with bathing her and things like that.

What advice would you give to caregivers?

Know the individual. With her being my daughter, I knew what her likes and dislikes were, I knew what would trigger her. I’ve been there through the ups and downs with her, trying to take care of myself as well.

You know, living with the virus that I’m living with, I don’t advise anybody to do what I did. I would be on my meds, then off my meds, and not eating properly. I thought that it was all about her. I felt like I had lived my life and I wanted her to have the best life that she could have, dealing with the stroke that she had. So yes, I don’t advise anybody to do what I did.

I was focused. I did everything that I had to do, but when I would take my meds, it would make me so sick that I was not able to take care of my daughter. I felt like, “Hey, I do not need these meds. I need to be focusing on her.” So, that is the reason why I got off my medication. I just thank God that my HIV health status had not become worse, reducing the number of my T-cells and reducing my immune system, creating an AIDS diagnosis.

It has been over two years since my daughter passed away, and I am thankful that I am in good health. My advice to caregivers is to take their meds, make sure to get the proper rest, eat right and stay up on their doctor’s appointments. If they need to go and talk to someone about their mental health, go and do it. There is nothing wrong with you getting that assistance. But, with me at that time, I felt like I didn’t need to get mental health counseling. I felt like, “I can do this, I don’t need their service.” But, as the years went by, I started saying, “Hey gal, you really need to reach out to somebody else, you need this help.”

Another suggestion would be to join a support group that allows you to talk to other people that have been down the same road. They can give you good pointers and you can share your experiences. It’s also good to have a support system. My support system was not my family. I had to go outside of the box. I had to go to my sisterhood, support, and advocacy group of women living with HIV. And once I went to them and began to tell them what I was going through, they comforted me. They were there for me, they came and asked if there was something they could do and reminded me that they would be there for me.

Throughout the care of my daughter, I felt stigma, even from my doctors, that those of us living with HIV, are physically limited, that we are not going to live long, and that the meds that we are taking are going to take a toll on us. However, I am still standing and I am strong, thanks to all of the support.

– Punkin

Challenging Stigma

Advocacy, Inspiring Stories, Lessons Learned, Stigma, Support, ,

After I found out about my HIV diagnosis, I was trying to find somebody that understood what I was going through, so I disclosed it to my pastor. I was not necessarily trying to get sympathy, but just trying to find a way to cope without allowing it to affect my Christian walk. I didn’t want to play the blame game thinking, “God, you allowed this to happen.”

During my visit, my pastor said, “It’s okay, you know I dated a woman who was living with HIV. Everything is going to be all right.” I think that was just his pep talk, but still, at that moment, I didn’t want to hear about the woman that he dated. I was going to him for spiritual guidance. I was already crushed, and feeling like my life was over. I was looking for an ounce of hope, to let me know that God allows us to go through things in order for us to have enlightenment. I wanted him to say, “Do not look at the problem, look at what is going to come after the problem.”

Honestly, I felt like his response was the typical thing I hear every day. When I ask somebody what do you know about living with HIV, the response is usually, “Oh my cousin has HIV,” or “I know someone that has it.” I know that’s their connection, but they can’t come and say that they understand, that they know how I feel and what I’m going through if they have not personally walked in my shoes. There are levels to finding the acceptance point of living with HIV: anger, depression, and the denial stage. At the first point, a person may feel like they want to walk off of a cliff because they feel life has effectively changed from that moment on. I think I walked back out of the pastor’s office not feeling any better than when I walked in. It didn’t do anything for me at that time but at least it allowed someone else to know that I was living with HIV.

I was always the type to be at the altar. I loved to sing at church and when I found out that I was living with HIV, I was heartbroken and just felt that I couldn’t participate in any church function. HIV is not something that you can come out and talk about like you’re talking about diabetes or mental health. It’s not a conversation that someone breaks out and feels comfortable talking about.

I remember one time, I had a conversation with one of my friends from church about my health condition and she ended up telling me that if I wasn’t her friend, she wouldn’t want to touch me, hug me, or do anything around me. At that point, it was like radars went up and I was thinking, “What the heck is wrong with you?” She said she has a phobia about people who have been diagnosed with full-blown AIDS (even though we know there’s no such thing). Because I went to her with my personal business, it made me feel diminished and lowered in terms of who I was as a person. I didn’t know how to respond. I had emotions, but I didn’t want to display them. I felt hurt and upset because I considered her to be a friend. So, I just took what she said and I walked away. At that time, being a person living with HIV, I didn’t think about where the other person was coming from. The only thing you think about at that very moment is what they said and how it made you feel, and that they had no idea this could happen to them or anyone.

Stigma is a very difficult thing to deal with because it’s something thrown in our faces from others every single day. I think if we can handle it head-on, we can begin to change the cycle. I found out some of the root causes of stigma; fear, lack of knowledge, discrimination, or lack of education. All of these things come from people not knowing and not wanting to know.

I deal with stigma by challenging it, just by letting people know the correct information. HIV is not something that we ask for, but it happens. You just advocate and stand up for yourself and not allow people’s words or slurs to bring you down or affect your self-esteem. I feel like you have to let them know that just because someone is living with HIV, this does not define the type of person they are. I didn’t give up, it just made me only go harder. At the time, I was still trying to get my bachelor’s degree but I did not allow the stigma to continue to affect me. I still graduated and I got a great job that I felt I was not qualified for. I was showing all of the people around me what I was doing by trying to affect change within society and our community.

I would say to others living with HIV, “Do not be afraid to be you. Do not be afraid to tell your testimony because this too is your testimony.” That person sitting in front of you or next to you, may be living with HIV and going through the exact same thing you’re going through and they are probably just looking for that one person to just stand up and say something. God placed it on my heart to do a lot about living with HIV. I want others to know that living with HIV, you can still have a life and continue to thrive.

– Diamond

My Journey: It Could Happen to Anyone

Advocacy, Emotional Health, Inspiring Stories, Lessons Learned, Support, , ,

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

HIV: Through a Different Lens

Emotional Health, Knowledge Buster, Lessons Learned, Stigma

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? 🙂

Suicide, My Dirty Little Secret

Emotional Health, Inspiring Stories, Lessons Learned

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

Accessing Services, Action Tips, Emotional Health, Inspiring Stories, Lessons Learned, Physical Health, Support

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.”

 

Conquering Your Inner Enemy

Action Tips, Advocacy, Inspiring Stories, Lessons Learned, Support, Taking a Stand, Uncategorized

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!

Ways That Help Me To Be Free From My Inner Enemy

Emotional Health, Inspiring Stories, Lessons Learned, Stigma, Support, Taking a Stand, Uncategorized

confidence-wordsI battle with low self-esteem because of things I have been through in my life, or things that have been spoken or done to me.

I never knew how to break free from it, I always felt less than anybody around me because of the way I looked or how I spoke and all I wanted was to feel love. I was finding love in the wrong places or things. I was looking for a way out, wanting to know how to escape everything within me and learning how to love me.

These are ways that help me to be free:

  • Taking responsibility for my own life and decisions, which can be hard at times, but I have to do it.
  • Forgive, which is a choice, not a feeling. Never give a person or something so much power over me that I choose not to forgive.
  • I no longer rely on someone else’s validation to feel good about myself. When I started taking responsibility for myself, it began to build my self-esteem and stability within and gave me hope. I started feeling good about myself.
  • Self-esteem problems can damage many important parts in my life, like relationships, ambitions, achievements, and health when playing the victim role.

I never want to be powerless and helpless another day in my life. I lost many years of my life by being powerless and helpless. I was giving someone else command over me, and allowing them to have control of my responsibilities and relinquishing my God given power and will.

I replace a negative with a positive by:

Changing my mind to what can go right instead of wrong. I learned the mind can only think one thought at a time.

  1. Using affirmation.
  2. Using humor and fun or being around someone that makes me happy.
  3. Reminding myself that the negative thought that I’m thinking is only negative, it has no power other than what I give it.

Most of all fall in love with me!

 

 

 

The Fear of Attending a Support Group

Advocacy, Emotional Health, Inspiring Stories, Lessons Learned, Support, Uncategorized

Doorways Through IPemmy ElderSupport groups are everywhere. There are support groups for drinking, sex, gambling, health issues, etc. Having a problem that requires a support group is hard enough but then you add the fear of attending that first meeting. You don’t really know anybody, but you do know that they all have the same problem going on that you do and that’s a comfort. A million thoughts are running through your head when attending the first meeting. Will I have to speak? Am I being judged? How will this help me?

Most support groups are non­judgemental and a safe zone where you can share your thoughts and feelings with people who understand what you’re going through. Being the newest member of anything is always hard, but being part of something that is helping you better, or get through your life is the best.

I was a new member of a support group about three or four years ago and I was terrified. I didn’t know anybody and was hesitant about people finding out about my status. The ladies of that first group were wonderful, though, and made me feel very welcome. Now it’s years later and this group has become such an integral and important part of my life. I love every single person so much and I can’t imagine how I would get through life without their support.

Support groups are there to help us and most of the time they end up being our biggest supporter. I encourage everybody to try one.