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Hello from it s nice to meet you You ve just picked up a beautiful opportunity Words of Wisdom from Women living with HIV AIDS By the Women of Wisdom 2021 FOUNDED IN 2005

The messages within represent the voices of women living with HIV AIDS who are members of the Women of Wisdom WOW program in Portland OR This book was created to offer HIV women support in managing their lives and to realize they are not alone These messages of hope are not limited to the HIV community as all people in this world need to laugh love and support each other if we are to thrive We want to thank our family friends healthcare providers and HIV community for their support 2 3

We re here and we ve been there WOW Creed Dedication by Karen Stories Nikole Joyce Marion 2 6 10 16 20 TA B L E O F C O N T E N T S Glossary 28 Resources 33 1

A Message from WOW All sisters of WOW past present future and returning have the inner strength to share our truths whatever they may be Together we have no fear of change or growth WOW is where we are accepted not stigmatized where we find unity and love We can laugh together cry together have great memories and support each other in a safe non judgmental environment 2 To become a giant of our dreams we must face our fears or remain as hidden as our secrets We are not afraid to step out of our past and into our future as we emerge into our best selves We are women of the whole building a sisterhood of trust and bonds that never go away OUR CREED OUR CREED WOW is a place where we can share our feelings and express our emotions without condemnation and remove isolation We are not alone 3

WOW is a group for HIV women led by HIV women The Goals of WOW are to strengthen the capacity of women living with HIV to Define health and wellbeing on their own terms particularly in terms of HIV Reduce social isolation promote community and strengthen social support networks Employ a holistic health approach that incorporates social emotional psychological spiritual and physical wellness OUR PROGRAM The Benefits of WOW 4 With the host of trauma informed services and programs offered through Quest Center positive women have opportunities to make connections with others to build friendships to escape isolation and stigma to manage their health and to become advocates for their own health care The WOW group meets digitally every Wednesday on Zoom from 5 7pm To learn more about WOW please contact Quest Center WOW services include Weekly support groups One on one peer support from other positive women Empowerment and life skills workshops Community meals Fun monthly activity nights Free childcare during WOW activities Transportation assistance Access to Quest Center services include Non opioid pain management Mental health therapy Trauma counseling Addictions treatment Yoga Acupuncture In person Wellness retreats Medical services OUR PROGRAM What s WOW 5

D E D I CAT I O N Over 30 years ago a woman who had recently been diagnosed as HIV Positive approached a Catholic priest sharing her story that there was a need in the community for a women s support group She had been attending some of the meetings of the men s support group but there were many things a woman needed to share and talk about which simply could not be done in a men s group In time a women s HIV AIDS agency was established known as WIAR Women s Inter community AIDS Resource The agency was small but slowly grew over time to provide a variety of support services 6 In 1996 my family s lives were totally changed when two of us were diagnosed as HIV Positive due to a blood transfusion during a challenging pregnancy My son and I lived for 14 years without knowing our diagnosis I reached out to WIAR and from there with the support of another HIV positive woman the WIAR agency and a nun who helped write our grant Women s Wisdom now known as Women of Wisdom aka WOW was born It was a peer based education support and outreach program for women throughout the State of Oregon and SW Washington Women s Wisdom had outreach workers who were open to being available in their community to support other HIV Positive women Women s Wisdom also sponsored and facilitated the only all women s three day retreat in Oregon SW Washington Even though this disease impacts both men and women many of their emotional and support needs though similar can be different Having separate support venues groups is important I am deeply touched by the determination of women to continue nurturing Women s Wisdom the tiny seed I helped plant over 22 years ago Karen Pancheau Co Coordinator of Women s Wisdom D E D I CAT I O N Dedication by Karen Pancheau 7

WHAT DOES IT M EAN TO LOVE A bond between kindred spirits It is the essence of your soul It comes from within you and is the greatest gift you can share It begins with you WOW WOMAN 8 LOVE In front of the world s media Princess Diana shook the hand of a man suffering with the illness She did so without gloves publicly challenging the notion that HIV Aids was passed from person to person by touch She showed in a single gesture that this was a condition needing compassion and understanding not fear and ignorance 9

FAVORITE FOOD HERO Ceviche Anna Nicole Smith DIAGNOSED ENJOYS November 8th 2011 Good people good food and true crime NIKOLE Nikole is a Powerhouse of spirit and honesty and a warm welcoming member of WOW She ll be the first to tell you about her past and how far she has come Nikole s happiest moment was the day she finally met Anna Nicole Smith She even has a tattoo on her ass to commemorate the moment Anna gladly signed the exact same spot on the day She is hoping to someday help other women facilitate their own HIV AIDS journeys maybe by 10 starting her own YouTube channel stay tuned Q How did you feel when you found out your diagnosis and what gave you hope for the future A I felt suicidal and what gave me hope was my best friends not giving up on me and their support got me through and moving away from the person who gave me HIV helped also What is your funniest memory after diagnosis Ten years later reflecting on my life and saying what took me so long to accept that I am a woman living with HIV So what Who is your favorite HIV celebrity Anyone with the courage to tell their story to help someone else cope and find strength to me that is a true celebrity If you could give words of encouragement or advice to women living with HIV what would they be HIV saved my life I d been a prostitute 25 years and didn t have respect for myself It forced me to change my life I found acceptance for myself and the disease and then found peace That d be my advice for others NIKOLE Nikole 11

Victimhood The depths of ratchet survival by Nikole I can lead a victim to the exit of the hood But I can not Make them leave I can just stay out the ratchet victimhood myself It s the victim that I see that gives me desire and strength to want to help It s the natural to defend my growth and demand It doesn t return Remember to look out for the unnatural for the strength to be in the present the right now not the past or the future It s my purpose to live by example Knowing the knowledge of the difference Knowing the struggle doesn t have to Fear me it needs to release me I no longer want to be the queen of the Hood victimhood I want to thrive not just survive womanhood is my remedy 12 VICTIMHOOD A POEM BY NIKOLE It s the victimhood that makes me fear its return to me 13

WHAT IS LAUGHTER FOR YOU I d rather laugh than cry When I laugh in a bad situation it eases me cuts the tension Hanging with my friends laughter is a type of medicine to deal with the stress in our lives it s how we enjoy ourselves it makes you see things in a new light and it makes you feel good at a cellular level Laughter MEMBER OF WOW 14 15

Pizza Canadian bacon and pineapple and coffee ice cream FAVORITE FOOD FAVORITE SHOW Grey s Anatomy easy question Richard Weber is her favorite character he taught everyone how to be a surgeon and how to be a better person Would live in Hawaii dream place to go to since was a little girl DREAM HOME JOYCE Joyce is one of the most active members of WOW both within the group and within our community Q How did you feel when you found out your diagnosis and what gave you hope for the future A Scared and I cried for two hours when I first found out afraid of what this meant for my life First person I told found out they were positive too that helped have hope and not feel alone during 16 that difficult time WOW women sharing their status and stories gave me courage and hope that in the future I would be able to share my story too What is your happiest memory after diagnosis Going to retreats with HIV folks over the years has been the happiest time for me Not just WOW retreats but others such as Strength for the Journey as well which I have attended over 5 times Getting creative and creating art with people like me has been a game changer It gave the feeling like I belonged somewhere For the longest time I didn t feel like I belonged in any part of life I felt like an outcast even now But I always felt like a part of something within the HIV community There is so much about being HIV that was positive If you could give words of encouragement or advice to women living with HIV what would they be Never give up Don t give up on yourself because you re more than your status JOYCE Joyce Hol 17

WHA T DO E S SU P P OR T MEAN T O YOU MEMBER OF WOW Since coming to Congress Barbara Lee has authored or co authored every major piece of HIV AIDS legislation She founded and has served as a co chair to the HIV AIDS Caucus and built bipartisan support for HIV AIDS education and treatment 18 SUPPORT When I think of support I think of bed I love my bed because throughout my life I have spent most of it homeless and was made to sleep on the floor or nasty couches I spent so many nights in shelters up and down the west coast when I was younger I told myself I would try not to become homeless and I wanted a big bed like a princess Four years ago I got the bed of my dreams Dark cherry and color with a big headboard and matching furniture 19

Marion Q What was your first favorite movie as a child A Dumbo FAVORITE FOOD Soul food Greens FAVORITE SONG Sexual Healing by Marvin Gaye If you could live anywhere where would it be Still Portland OR 1985 BIG GEST FEAR Being blind Still is This is NOT Marion but IS her favorite HIV celebrity Marion is a bit of a celebrity in her own way though Considered a Matron of WOW having been a member for 1 000 000 years Born and raised in Portland her favorite show is Law and Order and her hero happens to be God MARION She is often seen sitting and listening quietly as the rest of the women in group chatter away but don t worry when she needs a moment she s certainly not afraid to tell it straight 20 Marion is clinically blind but she see s all Who is your favorite HIV plus celebrity Magic Johnson Marion followed his career from his college days at Michigan all the way to the NBA What s your biggest fear Being blind Still is What would you change about yourself if you could Sight so I can see again How do you feel and what if anything gave you hope for the future After diagnosis a dark thought process set in I won t live with this This led to a difficult time which involved hospitalizations and an impact on not only my well being but my family s life has well What turned this around was the words of my son in law when he asked Do you want to create a legacy for your children and grandchildren 21 MARION DIAGNOSED

It was this the thought of how my actions can affect my family present and future that sparked glimmers of hope MARION However it was my 23 year relationship with my partner Lawrence that truly allowed me to have hope for the future Lawrence was the first person that did not run away when I disclosed my status and stayed by my side until his passing It was this love and acceptance that gave me hope What is your happiest memory after diagnosis Some of the happiest moments of my life after diagnosis was the time spent with Lawrence and the love we had One memory that stands out is a trip to Klamath falls where Lawrence convinced me to hike all the way to the top I can remember how beautiful the view was and worth the struggle I also remember that someone took a photo of us at the top with me holding on to him Another important memory that meant a lot to me after diagnoses was the time I wept with my mom 22 and she told me There is nothing wrong with me What is your funniest memory after diagnosis Telling my partner about it The way I told him If you could give words of encouragement or advice to women living with HIV what would they be Tell them that there is life and love after diagnosis with HIV Continue to love yourself follow all medical advice take all the required medications and prayers Since Marion has been a part of WOW for the longest amount of time she brings a unique perspective regarding the concept of aging while living with HIV AIDS Aging Well is a community that supports the well being of aging adults living with or affected by HIV AIDS For more information visit www AgingWellnw org or call 503 223 5907 23

A letter to herself April 13th 2011 Dear Marion Always remember to put God first Remember that you can do all things through Christ Stay focused on not being negative but always positive because there is a pot of gold at the end of every rainbow Remember to love yourself as only one other person can Believe in yourself because with God all things are possible Remember to stay strong and when you feel weak remember God s got your back I love you Marion PS in case you don t know who that other person is who loves you more than yourself it is the father the son of the holy Spirit 24 25

Power is what we have individually and with the numbers of women living with this disease Be strong have courage Love yourself and never give up Hope That s power 26 WOW WOMAN Tori Cooper recently became the first Black transgender woman to serve on the Presidential Advisory Council on HIV AIDS and she hopes her historic appointment helps shine a light on the disparities in health care for the Black trans community POWER WHAT DOES POWER MEAN TO YOU 27

Adherence Adherence means taking HIV treatment exactly as you are advised to by your healthcare professional including what time of day how often with or without food and so on Poor adherence can lead to drug resistance which means your treatment will stop working It s particularly important to make sure you don t run out of drugs as a break in treatment is dangerous AIDS Acquired Immune Deficiency Syndrome a disease in which there is a severe loss of the body s cellular immunity greatly lowering the resistance to infection and malignancy GLOSSARY Antiretroviral drugs ARVs ARVs are drugs used to treat HIV and stop it from replicating in the body ARVs keep the virus at a low level in the body strengthen the immune system and reduce the likelihood of passing HIV on Effective treatment can reduce the virus to undetectable levels Antiretroviral treatment ART ART is the treatment for HIV a combination of three or more antiretroviral drugs that target different stages of the HIV lifecycle AZT 28 Zidovudine AZT is the first HIV drug CD4 count Your CD4 count is the number of CD4 cells or T helper cells in your blood measured by a simple blood test This tells you how healthy your immune system is your CD4 count should go up when you have HIV treatment It s often talked about at the same time as viral load the amount of HIV virus in your blood Generally when your CD4 count is high your viral load is low and vice versa Center for Disease Control CDC A U S federal government agency whose mission is to protect public health by preventing and controlling disease injury and disability Co infection Co infection is when someone has more than one serious infection at the same time For example when a person with HIV also has tuberculosis TB they are said to have an HIV TB co infection This can make treatment for both infections more difficult but also more important Comorbidity Comorbidity describes two or more diseases or health conditions at a time For example a person with HIV may also have high blood pressure Disclosure When a person tells someone that they re HIV positive Although the word disclosure has been used for a long time it is now preferable to use the words sharing or GLOSSARY Glossary 29

Elite Controller Those who are infected with HIV but never develop symptoms and require no medication HIV Human Immunodeficiency Virus is a virus that attacks the body s immune system If HIV is not treated it can lead to AIDS Mixed status couple A mixed status couple is when one person has HIV and the other does not It is also known as a serodiscordant couple a discordant couple or a serodifferent couple GLOSSARY NIH The National Institutes of Health is the nation s medical research agency making important discoveries that improve health and save lives Post exposure Prophylaxis PEP PEP is short term treatment that stops HIV spreading throughout the body It must be taken within 72 hours of possible exposure to HIV for example after unprotected sex to be effective Pre exposure Prophylaxis PrEP 30 PrEP is a course of antiretroviral drugs that can prevent HIV infection It s for men and women who are HIV negative but who may be at higher risk of HIV infection For example someone who has an HIV positive partner or is unable to negotiate condom use or has regular sex without a condom may benefit from PrEP When PrEP is adhered to exactly as prescribed it eliminates the risk of HIV infection but the risk increases significantly if doses are missed OAR The Office of AIDS Research coordinates HIV AIDS research across the National Institutes of Health NIH Opportunistic infection Opportunistic infections are a type of infection that occur in people with a weakened immune system for example people living with HIV Self testing HIV self testing allows you to take an HIV test in your own home or another private place These kits are becoming more widely available and give a result in 15 to 20 minutes Sexually transmitted infection STI STIs are infections that can be passed on when you have unprotected sex or close sexual contact with someone who already has an STI Examples include chlamydia genital herpes gonorrhoea hepatitis C and trichomoniasis HIV is also a sexually transmitted infection although there are other ways it can be passed on GLOSSARY telling This is because disclosing can often reinforce stigmatising beliefs that a person has done something wrong if they are living with HIV 31

Undetectable virally suppressed A person living with HIV is considered to have an undetectable viral load or to be virally suppressed when antiretroviral treatment has reduced the virus in their body to such low levels that blood tests cannot detect it Having an undetectable viral load means you can t pass HIV onto others and your health won t be affected by the virus It is essential to adhere to treatment and have your viral load monitored by a health professional to make sure it stays undetectable GLOSSARY Viral load A person s viral load is the amount of HIV virus in their blood It is measured by a simple blood test It can tell you how well a person s antiretroviral treatment is working 32 Window period The amount of time it takes after infection for the body to produce enough HIV antibodies to be detected on an HIV test in order to get an accurate result This is between 2 and 12 weeks depending on the type of test Resources General Local HIV Programs QUEST CENTER 503 238 5203 CASCADE AIDS PROJECT 503 223 5907 HIV HEP C PREVENTION PROGRAM 503 988 3030 MULTNOMAH HIV CLINIC 503 988 5020 OHSU PARTNERSHIP PROJECT 503 230 1202 OREGON AIDS STD HOTLINE 1 800 777 2437 OUR HOUSE 503 595 6134 Multnomah Co Health Dept HIV STD Hep C TESTING 503 988 3700 Want to know more about WOW Call Justine Justine DaCosta HIV Services Program Coordinator 503 238 5203 x 311 JDaCosta Quest Center org www Quest Center org RESOURCES Stigma Around HIV A negative attitude and belief about people with HIV It is the prejudice that comes with labeling an individual as part of a group that is believed to be socially unacceptable 33

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Free low barrier HIV testing AT QUEST