Category Archives: Action Tips

Being a Supportive Caregiver

Action Tips, Emotional Health, Support, , ,

As a caregiver to my mother who is living with HIV, I have found that being an emotional support is a crucial aspect of helping maintain her health. Sometimes, it may not seem like much to be that shoulder to lean on but remember, stress can be a huge factor in the state of one’s health. Showing support to the person you are caring for can help relieve those feelings of being overwhelmed and stressed. In the long run, this can help improve their health.

For me, I have found three things to be very important when I think about the type of support I provide my mom.

• First, being non-judgmental is key. People living with HIV are living every day with stigma and judgment from our society. Be a safe haven for the person you are caring for. Provide a judgment-free zone, where they can freely open up to you.

• Second, assist them in reducing stress through interaction with others, through their faith, or through exercise. Staying upbeat is important. Stress is the number one factor that causes health to go down because that’s when a person wants to give up.

• Third, you have to take a moment to reflect on yourself and your role as a caregiver. It’s very important to self-care. The role of a caregiver is to be a support to someone you love, but if you are giving all of yourself, this can cause you to burnout.

You don’t have to be someone’s only source of support. Part of supporting your friend or family member is providing them with resources they can use to seek support from others. This is important for the person you care for, as they can gain even more strength from others. This is also important for you as a caregiver. Helping the person you love build a network of support will help you to not get overwhelmed as well.

– Nanny

Finding the Courage to Survive

Action Tips, Advocacy, Emotional Health, Inspiring Stories, Lessons Learned, Taking a Stand, ,

When it comes to people who are living with HIV and AIDS, stigma in the church didn’t just start in 2020. It’s been around for quite some time.

Several years ago, I was invited to speak at a church. When I arrived, no one knew I was the speaker, so I just sat in the pews next to two ladies who were talking about people living with HIV, talking in such a negative manner that it got under my skin a little bit. Somehow, I managed to hold my composure.

When it was time for me to speak, I focused on those two ladies as I talked about how I was abducted, got shot, and left for dead on the side of the road. I looked directly at those two ladies when I said that’s where I contracted the virus and because of that, I am living with HIV. I could see their jaws drop, the shock when they realized they had been sitting right beside a person living with HIV. At the end of the event, the two ladies came up and apologized for how they had spoken about us. But, even though they apologized, I had already heard the way they really felt about people living with HIV/AIDS. It’s sad to say that in churches, where everybody is supposed to be about love and God, God may not discriminate, but men and women do.

Another time, I was a visitor at a church where everyone already knew I was living with HIV. At the end of the service, when everybody gathered together to hold hands for the last prayer, I reached out my hands but no one would take them. That was a very, very bad feeling. I was shunned by people who are supposed to be serving God, supposed to love their neighbor as themselves.

There are other times that I’ve overheard people in churches talking about people who are living with the virus. I’ve heard from some of my peers how they have been treated in churches, how they have been made to feel “some kind of way” after they have told their stories. To me, claiming you are God’s children should mean loving one another and caring about your sisters and brothers no matter what, whether it be HIV/AIDS or any other type of illness.

I feel that if I walk up to someone and say, “I’m living with cancer, “I get all the support in the world. If I walk up and say, “I’m a diabetic,” I get all the support in the world. If I walk up and say, “I’ve got HIV or AIDS,” then the stigma shows on their face. A word doesn’t have to be spoken. It’s just the instant reaction that you see from a person when they know or find out you’re living with HIV or AIDS. It changes 100% the way a person reacts with you. You would think, that in 2021, people would be educated when it comes to HIV and AIDS, but they’re not.

However, I would tell the person that is living with HIV that you have to find the courage within yourself. It’s a type of bondage that holds you when you have something bottled up inside that you need to set free. Your pastor is the one you should be able to confide in to help ease that bondage. The pastor will have whatever message God has given them to give to you. So, I would tell someone living with HIV to feel free to talk to their pastor and let them know because that’s where you get your support. You need that spiritual support. But the pastor can’t help you if you’re not sharing it.

When I got the courage to step up and say that I am the face of HIV, I felt that I had to tell people, to help build up the confidence of others who are living with it. To let others know that it’s ok to walk in those shoes – they are your shoes and you shouldn’t let anybody bring you down. The virus doesn’t dictate your life. For me, it was taking my power back. Once you take ownership of it and stop allowing it to control you, you can live. You can live a productive and happy life.

Many of us are still living in the closet. The stigma shouldn’t exist at all. It should be like, “I contracted the virus. It’s not your business how, but, yeah, I’m living with it because that’s what it is. It doesn’t make us the men or women that we are. It doesn’t proclaim our spirituality. We are still the loving beings God created. We should be able to walk around with our heads up high, with a smile on our face, and say, ‘This is me!”

-Marvene

A more convenient, monthly treatment for HIV cleared a key hurdle

Action Tips, Physical Health, Resources, , ,

Once-a-month injection of antiretrovirals works just as well as a daily pill regimen, trials show

In two clinical trials, a monthly injection of antiretroviral drugs was shown to be just as effective as a daily pill regimen at controlling HIV.
SERGII PETRUK/ISTOCK /GETTY IMAGES PLUS

By Jonathan Lambert
MARCH 4, 2020 AT 5:00 PM

People living with HIV are one step closer to having a once-a-month treatment alternative to downing two or more pills a day.

There is no cure for HIV, the virus that causes AIDS. But combination antiretroviral therapy, or ART, can effectively halt the replication of the virus, nearly eliminating it from the bloodstream and prolonging life expectancy (SN: 11/15/19). For the therapy to work, though, people must stick to a daily regimen of two or more pills, which experts say can be a challenge for many.

Now, the results of two phase III clinical trials suggest that a monthly shot of antiretroviral drugs works just as well as daily pills, researchers report March 4 in two studies in the New England Journal of Medicine. If approved by regulators, the therapy could be a more convenient treatment for the estimated 1.1 million people living with HIV in the United States.

“From a patient perspective, these results are very positive,” says Elizabeth Tolley, an epidemiologist at FHI 360, a public health nonprofit based… click here to read more.

8 minutes, 46 seconds: A love letter to our people

Action Tips, Awareness Days, Resources, Taking a Stand, , , , , ,

*** Content warnings: anti-Black racism, violence, pain, killing of Black people by the police, lack of accountability by the State, KKK *** 

June 2, 2020

PWN family,

We love you.

We have been rocked and our hearts are broken by the footage of George Floyd, murdered by Minneapolis police officer Derek Chauvin, who held Floyd under his knee for a full 8 minutes and 46 seconds. George Floyd cried out for his mama as he was dying.

Eight. Minutes. And. Forty. Six. Seconds.

We are breathless with grief, rage, pain, and despair.

But Derek Chauvin did not act alone. Officer Thomas Lane pulled… Click here to read more.

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.”

 

It’s Me Again

Action Tips, Advocacy, Emotional Health, Inspiring Stories, Taking a Stand, Uncategorized

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

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!

At Let’s At Let’s Talk About It- we stand up and speak out against gender-based abuse!

Action Tips, Advocacy, Emotional Health, Resources, Taking a Stand, Uncategorized
reprinted from:  http://www.huffingtonpost.com/shannon-weber/women-hiv-and-trauma-towa_b_10489298.html

Women, HIV and Trauma: Toward Resiliency & Healing

06/17/2016 02:52 pm ET | Updated Jun 18, 2016
  • Shannon Weber Love note writer + public displays of affection + mapping the end of HIV transmission

    • Co-authored by Karishma Oza, HIVE Program Coordinator. 2016-06-15-1466025254-1904082-LoveNoteHeal.jpg

    One in four U.S. women have experienced gender based violence. Among women living with HIV, one in two has experienced intimate partner violence, and more than 60% have been sexually abused – 5 times the rate of the general female population.

    For over twenty-five years, Zuckerberg San Francisco General Hospital & Trauma Center-based HIVE clinic, has provided compassionate, expert reproductive and sexual health care to women living with or affected by HIV. The impact and consequences of violence against women, particularly women living with HIV, is magnified through the lens of women’s reproductive health. Reproductive health highlights the intersection of violence and reproductive justice at the individual, community and institutional level.

    • Trauma is associated with: increased HIV vulnerability, higher HIV incidence, faster disease progression, more hospitalizations.
    • Unaddressed trauma is associated with twice the rate of death among women living with HIV.
    • The aftermath of violence and/or trauma ruptures women’s relationships with themselves, their partners, family members and the medical system.
    • Women living with HIV have higher rates of tubal regret – meaning more women second guess their decision to have a tubal ligation, for some this decision was made for them.
    • Partner contraception sabotage increases rates of unintended pregnancies.
    • 33 U.S. states with HIV criminalization laws enforce long histories of systemic oppression, further stigmatizing women.

    Pregnancy, contraception, trauma and HIV vulnerability intersect in ways that dramatically impact women’s lives. Even in the face of these overwhelming statistics and devastating outcomes, there is hope. Our collective resilience is cause for a standing ovation. We can seek solidarity in our advocacy efforts and heal through relationships even as we continue efforts to create systems-level change.

    Progress at the national level to integrate trauma-informed care into the primary care setting and specific references to trauma-informed care in the updatedNational HIV/AIDS Strategy, shifts institutional approaches. We share strategies for operationalizing these guidelines at the clinic and individual level with a lens toward healing and resiliency-oriented approaches for working with women living with HIV who’ve experienced trauma.

    1. Shift our focus from “What is wrong with you?” to “What happened?” Moving away from blame, allowing space for her story, staying curious, seeking to understand her worldview creates opportunity to meet women where they are and understand their lived experiences.

    2. Commit to self-care and resiliency oriented approaches to our work. More than just practicing what we preach, this integration of trauma-informed principles become the touchstone for truly becoming a trauma reducing, healing system. This begins with a commitment to heal ourselves.

    3. Include women. Ask women for feedback on provider and program approaches, integrate women’s lived experiences when designing new programs or crafting policies, hire women for important roles. Create space for women living with HIV to lead.

    4. Use trigger warnings at the beginning of emotionally intense meetings or online content. Those with primary or secondary trauma are among us. Invite self-care. Create awareness and respect with an overview of what to expect. Respect the self-care measures others take.

    5. Universal screening for intimate partner violence, with counseling and referrals. Preventative education about the intersection of intimate partner violence and health can be provided to all patients, not just those who have disclosed a history of violence. Ask questions in non-triggering, nonjudgmental language with the goal of patient empowerment and safety.

    6. Rape and other forms of violence remove women’s sense of power and control. The medical system is inherently hierarchal. However, medical visits should not create more pain, violence, or humiliation. Turn commands into questions, create space for her response, provide opportunities for women to be in control.

    7. “Difficult” patients may have experienced sexual trauma. She isn’t difficult; she’s had a difficult life or experienced traumas that are difficult to integrate. What might be difficult is the system she’s trying to navigate. Reframing allows space for the experience she is living, invites you to meet her where she is today.

    8. The body of a survivor remembers traumatic experiences. We are somatic creatures; this is our vulnerability and our strength. Through our interactions with survivors, we can change the way we see her, then change the way she sees herself.

    Toward resiliency and healing, we share this poem.

    beyond compassion
    By Silvi Alcivar, The Poetry Store

    the gates call you
    to move forward,
    to pass through thresholds
    that make you able to sustain you,
    the work,
    that make you able to sit in service,
    to model dignity,
    to recognize trauma,
    to take care of community,
    self,
    to live your intellect through your heart
    and be wise.

    the wise one asks:
    what’s the beauty of what we attract?
    what’s the beauty asking me to heal?

    the wise one remembers the breath.
    the wise one drinks the waters of nourishment and release.
    the wise one works with the shadow knowing the shadow means
    there’s always a source of light.

    the wise one asks:
    what are you teaching me?
    what isn’t being seen, held?

    oh, the gates call you, wise ones,
    to move forward, to attend
    to what needs attending, what wants attention
    in ourselves and our inheritance.

    call in your support. breathe.
    honor the spaces between.
    hold intention. clear. release.

    put on your golden cape.
    heal. and be healed.

    Resources:
    Positive Women’s Network-USA

    Women’s HIV Program at UCSF

    HIVE’s Beyond Compassion Trauma Symposium Resources

    Don’t Cheat on Yourself

    Action Tips, Emotional Health, Inspiring Stories, Lessons Learned, Taking a Stand, Uncategorized

    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 bacalmness photo for blogths, 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?