Yearly Archives: 2017

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.”

 

Long Distance Friendships: Expressing Yourself with a Pen Pal

“I hope I’ve changed her life like she has changed mine, and I feel like I probably have”

Being a pen pal holds a different meaning for each woman who takes on the role. Through the Let’s Talk About it Sisterhood Pen Pal Program, women can explore their unique needs as individuals and foster friendships that help them address these needs. For some of our members, a pen pal can help ease a sense of isolation or loneliness. For others, a pen pal can serve as a boost of excitement or support.

One woman who I spoke with told me how her pen pal friendship is a release for her. She lives an incredibly busy life and is often swamped with everyday duties and caregiving work. She described her experience as a pen pal as something that lets her step away from the chaos of daily life; something that forces her to find moments for herself. Her pen pal gives her advice, shares resources and provides wisdom. “I love having her because she has been through it longer than me. She helps me out a lot. It’s like I have somebody different outside my house, and my world…it’s really an outlet.”

“She just gets me,” she said. “She’s really just a good friend. It’s like someone you haven’t seen, but you can rely on.”

She expressed a deep sense of love and commitment to her pen pal. and told me about the connection they have. “She just gets me,” she said. “She’s really just a good friend. It’s like someone you haven’t seen, but you can rely on.”

We also discussed the reciprocal benefits of having a pen pal, and she said that she feels like she probably adds a lot of positivity to her friend’s life. “I hope I’ve changed her life like she has changed mine, and I feel like I probably have,” she said. “I feel like I cheer her up a lot. I’m kind of like her cheerleader, you know? We just put in a lot of work to explain how much we appreciate each other.” And when I asked her how she would sum up her friendship in a few sentences if she had to, she laughed and told me, “Well, she’s so sweet! I feel like she was picked out of the candy jar. I love her to death.”

 

Staying Positive: the Power of Pen Pal Support

“It is not every day that you encounter a friendship that has had the power to transform someone’s life”

It is not every day that you encounter a friendship that has the power to transform someone’s life. And it is even rarer that these types of friendships happen between near-strangers who live miles apart. However, when I interviewed one of our Let’s Talk About It Pen Pals this week, that is exactly the type of beautiful relationship I discovered.

I spoke to this inspirational woman on the phone after she attended the OASIS Positive Living Conference, and she shared with me her journey living with HIV and the beauty of her experience as a pen pal. Through a stunning twist of fate, she actually got the chance to meet up with her pen pal and the rest of the Let’s Talk About It women at the conference. She happened to be talking to an LTAI member about being a pen pal, and this member mentioned that conversation to someone else, and then the women all pieced the information together. This was the pen pal of somebody in LTAI! It sounded like an extremely emotional and touching experience, and by the end of the weekend she had inspired the LTAI group so much that one of our women spoke up and talked about how powerful the whole meeting had been.

 

I asked her what it means to be a pen pal, and she told me that it means the world. “It’s something positive you can rely on, when it feels like everything else is going wrong,” she explained. “When you live with HIV, you have to be positive, and having my pen pal makes me stay optimistic.” I asked her to expand on that, and she told me about the feeling of having a difficult day, and then going to her mailbox and finding a package filled with loving, unique gifts. “It’s very optimistic, and it just helps me feel good about myself. I also pass these things on to other women. It’s like passing on little pieces of positivity.”

“…describing the growth she has experienced from a shy, reserved person into somebody who is passionate about expressing herself, networking, meeting up with other women and sharing resources.”

We discussed the strength that she has gained through this program, describing the growth she has experienced from a shy, reserved person into somebody who is passionate about expressing herself, networking, meeting up with other women and sharing resources. She is goal-driven and learning how to speak up and advocate effectively for herself and others. “Doing this with Let’s Talk About It is just inspirational,” she said, “and it reminds me always that I’m not alone, you are never alone.” And when I asked what her current goals are, she happily told me “Well, hopefully one day I can get out to a meeting and join you all. That’s something I’m going to grab in the future.”

Sharing Joy with a Pen Pal

“Writing to her pen pal, and receiving letters in return, is a way for her to ‘pass on’ happy thoughts that she has towards herself and others.”

Through the Let’s Talk About It Sisterhood Pen Pal Program, women are able to reach out to those far away from them and give and receive uplifting, positive messages. Oftentimes, living with HIV can seem overwhelming, negative, and isolating. However, through the interviews I have been conducting with women who are a part of our Pen Pal program, I have been honored to witness some incredibly positive and optimistic moments.

One woman in particular who I spoke with showed me the sheer beauty of having a friend to write to. She was so bright and lovely when we chatted, and very happy to answer my questions with simple statements like, “Well, I just love having a pen pal!” She told me her favorite part of the experience was the simple, fun nature of the relationship. It didn’t add any stress to her life and instead was an uplifting, light thing that kept her upbeat. Her and her pen pal communicate about once a week and they send each other poems, bookmarkers, inspirational quotes, and share pieces of wisdom they may come across throughout the week. “I wrote her this little poem this week,” she told me, “and I just can’t wait to see how much she loves it! I know she’s going to love it.” Writing to her pen pal, and receiving letters in return, is a way for her to “pass on” happy thoughts that she has towards herself and others.

Pen Pals: Fighting Isolation with Friendship

“When I get one of her letters, it makes me feel wanted,” she said.

As we enter into Fall, a period of reflection, we want to take some time to look back at accomplishments and the growth that we have seen here at Let’s Talk About It. Many members have been pen pals through our Sisterhood Pen Pal program for a couple of years, and we want to spend the next few weeks looking back on the impact of these friendships through weekly blog posts about interviews with women who are pen pals.

As individuals, we have the power to heal, process and grow through pain. Often these things happen alone, or through personal struggle. But having a sense of community and solidarity to aid one through a difficult experience can mean the world. With Let’s Talk About It, we have clearly seen the benefit of having a pen pal to help women living with HIV through lonely or hard moments.

One of the members of the Let’s Talk About It Sisterhood Pen Pal Program recently spoke to me about the power of her friendship with her pen pal. She talked of the love she has for her, and when I asked what she feels she offers her pen pal, she immediately replied, “Well, I love her to death.” When discussing what made the pen pal friendship different than others, she talked to me about the power of breaking down barriers and stigma. “When I get one of her letters, it makes me feel wanted,” she said.

It can be hard living in isolation, especially when you have HIV. And as she said, her pen pal keeps her relaxed and certain that she is not alone. Even when other people may reject her, she has the support of her pen pal. With her, there is no barrier and no judgment. She is able to overcome her isolation with the love she has fostered through this friendship.

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!”