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.
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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.”
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.
I love sex. Really I do!! I love to talk about sex, I love to educate people about healthy sex and of course I love to engage in healthy sex. The best part though is the look on peoples face when I tell them I am HIV poz and that sex is awesome in my world today. Ooohh the blushing I witness on a daily basis!!
The majority of people have a mindset that if your HIV poz, 1) No one will want you, 2 Poz’s can’t EVER have sex so they don’t transmit HIV to anyone, possibly go to jail or prison, and 3) You’re gonna die so what’s the use? FOR REAL!!! I have actually had that one said to me. Well, I’m here to tell you that sex is “doable” Ha ha get it, doable?
Sex is the major route of transmission for HIV. However when I was diagnosed I wanted, no… I NEEDED to blame someone. Once I grew up a bit (emotionally, spiritually and mentally), after being Poz for 13 years, at 42 years old, I realized that I was ultimately responsible for my Poz status. Then, I forgave myself. Once I grew up a little I came to be ok with me; I decided that I do like sex and that I want to have more of it!!!
So what’s a girl to do?!?! I mean really!?!?! Dating sites are great, but when do you disclose? In your profile? First date? After he’s in love with me and will not want to leave me? Well, I will tell you that I have done both and it ended well both times. One walked away…the “after he falls in love” one. Then the “first date” one, he stayed and got educated about HIV. He started taking PReP, along with condoms, and it was on for us. That relationship ended after 13 months. But before it ended…I learned a lot about me and my orgasms. That’s right I said it loud and proud “ORGASMS ARE FUN”.
Although I am currently single, I am hopeful for a life partner with the same mindset and sexual drive as me. It was a long road to get here and I am thankful for every part of it. Today I am an HIV + 49 year old sexually active happily orgasmic woman.
Stigma is a cancer. If we allow it to, it eats at your soul. We can’t allow stigma to take over or overshadow us as individuals. HIV is such a small part of our DNA. We were who we are before we contracted or were born with HIV. It is nothing that is our fault and we can’t let it overshadow our goals. HIV is something that moved in, uninvited. We have to be stronger than HIV.
I am a mother. I am a grandmother and great-grandmother. No matter how great the obstacles we face, God never puts too much on anyone that can’t handle it. Believe in yourself. Look in the mirror and tell yourself that you love yourself.
Put HIV in its place and love your life. Continue to live your life and be confident with the woman that you are. I was diagnosed 29 years ago and today I stand before you, undetectable.
I received my new labs on Thursday. I reached a goal I had set for myself when I was first diagnosed. My CD4 is 265, up from 178 three months ago. Yay!
When I was diagnosed almost 3 years ago my CD4 count was 12. This may not seem so great to a few, but this is amazing to me. I really didn’t expect to reach my goal this soon. Especially since one doctor had told me it took one of his patients 7 years to reach a CD4 of 200. I am very happy to reach this milestone and am now thinking what my next goal should be. I know my main goal is to always stay as healthy as I can. I try to avoid other illnesses but still live my life.
I take all my meds daily (12 pills). I see my HIV doctor every 3 months and I go to all my other appointments with other specialists. I try to obey their orders. I see my therapist every few weeks and try to keep my stress level down. I am happy to be alive and fairly healthy. I hope all my fellow tribers are too.
*This post was adapted from a message originally published in the “Let’s talk About It Magazine.”
Last week we heard from LTAI Peer Advocate “Linda” with her tips to take control of HIV. You can see her first four tips HERE. Read below for the rest!
- Staying organized: Make a medicine notebook where all your medications are listed. Everyday, check off what you’ve taken and at what time. Use a big calendar too, to keep track of your doctor’s appointments.
- Being comfortable with your provider: Honestly, if you don’t care for your provider, change! Because if you’re not comfortable, you’re less likely to go to your visits.
- Taking your meds: You need to take control of your own situation. The disease is in your body doing what it wants to do. So by not taking your meds, you’re not taking control. If you don’t take the meds, you’re not in control.
What tips would you share with your peers about taking charge of your health? Share below!