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.”
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”.
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!”
We all feel at times 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
- If I am thinking that am going to fail at something, I tell myself I will pass.
- Expecting the best will happen when my family and I get together.
- 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:
- My self-esteem is high because I honor who I am.
- I am grateful for my healthy body. I love life.
- As I forgive myself, it becomes easier to forgive others.
– Louise Hay
- I am beautiful.
- I will succeed
- Using humor and fun around someone that makes me happy.
- Going out to eat.
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.
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!
I 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.
- Using affirmation.
- Using humor and fun or being around someone that makes me happy.
- 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!
I was watching The View when I heard Cookie Johnson say when her husband ”Magic Johnson” confessed that he was HIV she had to make a choice. Her choice was to leave and let him die or stay and help him live!
She said how hard it was for her when he had to close himself in a room and call all the women he had, had sex with over the past 10 years. I heard her say this and I thought “This is my story in reverse.”
I’m the infected spouse and my husband decided to stay and help me live. He stood by while I had to talk to the health department and disclose my sexual contacts. He wasn’t literally in the room but he knew I was online and on the phone giving names and contacting those I may have exposed or who may have exposed me to HIV. He chose to stay and in the early days or months he probably thought I wasn’t going to be in his life and our children for much longer. He chose to stay and help me fight this disease. He was tested within hours of my diagnosis and tested negative. I thank God for that. He chose to care for me when I couldn’t get out of bed. He drove me to every appointment to sign up for care, for medicines, and everything connected to infectious disease. He keeps me on schedule and checks for any new side effects or symptoms. He drives me to the hospital when I have to go and stays until I force him to go home and rest. I wouldn’t say he’s a Saint but he’s pretty darn close to it.
We still argue as many couples do that have spent so many years together. They are not big fights more of disagreements because we don’t agree on a lot some days. One thing I guess we do agree on and that is that it’s better staying together than being apart. And alone.
I love this man whom I decided to marry so many years ago and will try to make up for the terrible choices I made in a bad time in my life. If he asks something of me I can not refuse and part of that request is keeping my status private from most of our life. Secrets are hard for me and lies are a close second.
Now in our later years we care for one another. I guess the part of the marriage ceremony fits here. “In sickness and in health” We are the elderly couple sitting together on the park bench or walking on the beach. We may not be always holding hands but we will be very close together.
A few years ago, I started a new journey on my own when I moved to a new city. I have been HIV positive for many years, and sometimes I found myself having too much on my mind at one time. It would become very chaotic and overwhelming, so one day I decided to go and sit in my yard to try to relax. I wanted to sit outside and get the sun on my face because I felt like I could draw energy from the sun.
I would breathe in slowly, thinking about nothing but drawing in energy. I keep breathing in until I felt like I bottled up all of the energy I could manage. Then, I would breathe out slowly. While breathing out, I let everything go. I let go of stress. I let go of the things that are outside of my control. I just let everything out while breathing out. I tend to let my arms out too while I’m breathing out because it helps me get rid of that extra energy. When I breathe and meditate, it is about me letting go of the things I cannot control.
My advice for anyone who would like to start meditating is that, first of all, you can meditate anywhere. I used to live by a beach, and I would walk on the beach in the mornings when it was quiet to do my breathing. You can also meditate in your bed before you go to sleep. I suggest sitting up in your bed, crisscross if you can. Then just slowly breathe in and out, focusing on letting go of the things that are outside of your control. The most important thing about meditating is finding a quiet place where you can focus on your breathing.
What I have learned from meditating is that worrying isn’t going to change anything in your life. With meditation, I’ve learned that it is important to let things go and not focus on the things that are outside of your control. It helps to make life’s hardships a little easier to deal with. We have to be okay with not always being in control.
Support 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.
First, I want to start off and say, I am not a presenter. I never have been. Getting up and talking in front of people seemed to be the worst kind of torture to me. I hated it and I never could remember all I was supposed to say or do. They say the only way to conquer a fear is to do it often and repeatedly.Recent events have allowed me to put this theory into practice. I have had to come out of my shell and actually speak to people. At first I was terrified about speaking in front of people and having all their eyes on me, it was a nerve-wracking feeling. Well, I gritted my teeth, buckled down to practice and got through it with a lot of help and support from others. Now I have been making presentations on a pretty regular basis, and this mostly involves talking to people about living with HIV and how it has had an impact on my life. Wanting to help other people living with HIV is what gave me the push to tackle more public speaking. I wanted to educate others on the disease, those living with it and those who are not.
Being able to help and educate people was important to me. It’s important that the word get out there that living with HIV is not a death sentence anymore, you can live a long and healthy life. I can’t say I still don’t get nervous before a presentation, but once I’m warmed up it’s usually a piece of cake. I usually practice what I’m going to say the night before, and it really helps when you have a partner to practice with. That way you have somebody besides yourself listening to your presentation, and they are able to give you feedback on it.
I would say you can really start speaking out anywhere, but probably keep it small at first. As long as you have the passion to educate, inform and help people you will be able to speak up anywhere. It doesn’t matter if you have the experience or not. Your passion will shine through.
June 27th is National HIV Testing Day. As we observe this day, take time to create awareness and encourage testing. So, I challenge you to take the first step as well and speak out.
Here are a few sites for additional information:
Share with us the steps that you take in observing this day.
As human beings, we automatically are taught to nurture others and that makes us start on the road of learning to”cheat on myself.” I never thought about that until today. I should be on the path to help myself when it comes to things like bubble baths, going clothes shopping, getting my hair done, etc. I should be open to learn how to see the positive in everything and learn how to enjoy everything that I am doing. If not, I am“cheating on myself.”
Sometimes I have family, friends, or significant others who try to take all of my time away and sometimes it feels as if I am being taken advantage of. The time that I have set for myself should maybe be marked as an important appointment on the calendar and even put it on the phone with an alarm. When I do this, I will make sure to tell others that I am going to be busy and stick to it because I deserve it and so do you. It’s just as important to do this for myself and makes me just as important as someone else is. If I stand up and say “NO” or just saying that I am busy, that should be enough. I don’t feel guilty because this is me that requires rejuvenation.
Just because I learn to say “NO” doesn’t mean that I don’t love others, it’s just that I have decided to do things for me as a women with HIV and it makes me learn about myself, then I will be better at helping others. As a matter of fact, it makes me stronger and maybe I have learned not to “cheat on myself.”
I decided to write about this because I have been letting others dictate my choices and that is not going to continue because it will stress me out and cause me to be sick. “Cheating on myself” makes me forget all of the little things that make mehappy.
Get back to doing you, and stay on track, so that you will be able to have strength to show others why you are so happy, maybe it will catch on.
What makes you cheat on yourself and what would you like to do for yourself that will help you stop?