Living with HIV/AIDS: What Can I Be Thankful For?

This post was written by BLC guest blogger Rob Quinn

The holidays are here and in New England the colorful leaves of fall release their hold on tall tree branches and float easily to the ground. Temperatures continue to dip. This can be a tricky time of year to navigate for so many reasons, so, to experience the holidays with minimal stress, it’s important for me to feel a deep sense of thankfulness for all of my blessings.

6643935221_7fb0c5195e_b

I can hardly believe it’s been twenty-two years since my HIV diagnosis. The news that I was HIV positive was delivered just days before Thanksgiving 1993. That year the Centers for Disease Control and Prevention estimated that newly diagnosed individuals would have a seven-year life expectancy. Although the journey has not been easy, and often grueling at times, today I celebrate life, peace, health, happiness, support, and simple living as I gratefully age fairly healthy with HIV/AIDS – sometimes struggling, sometimes succeeding.

An HIV-positive diagnosis can be a shocking emotional experience. Living with HIV can feel overwhelming and incredibly isolating. But, we are far from alone. Countless people and resources are available to help those of us during the holiday season and throughout the year. Each year I make a “gratitude list” as a way to focus on the positive in my life.

As a long-term survivor living and thriving with HIV/AIDS, I am grateful for many things, including surviving long enough to have gray hair, or as I refer to it, my “wisdom highlights.” The top five HIV-related things I am thankful for this holiday season are:

  1. HIV Care Is Better Than Ever

In the United States, and specifically in Massachusetts, high quality HIV/AIDS treatment, care (i.e., oral health) and support services (i.e., affordable housing) are more accessible than ever. We have a wide variety of providers to chose from, medication options, and complementary therapies (i.e., yoga, massage, acupuncture) that can be used to enhance our quality of life. With proper antiretroviral therapy (ART) and support, people like me can stay healthy, live longer, and significantly reduce the risk of transmitting HIV to others.

I am the expert on me! I am the most important member of my health care team and my own best advocate. My health care team members (a.k.a. coaches) and I work in partnership, striving for optimal health by talking openly and honestly about my concerns, asking questions of one another and then developing an ongoing personal health plan that’s right for me. I personally select experts who advise me about all my options and then the final decision is up to me. As my cousin Sarah once told me, “You are the captain of your ship, Robert, and ultimately it comes down to you when you experience such progress. Remember that!”

  1. I Am a Success, Not a Failure

All of us encounter difficult challenges in our life. HIV is something I never expected to happen. Both the challenges and triumphs have formed me and made me stronger. I truly believe that we can all overcome and grow from life’s obstacles when we learn to see them differently.

  1. All of Us Write Our Own Stories

I don’t live with HIV, HIV lives with me. Yes, I am HIV-positive. But, first and foremost, I am Rob. My HIV status, much like my gender, age or sexual orientation, does not define who I am, but it is part of my life and part of what made me who I am today—Optimistic, Confident and Determined! I am the person that I am today because of HIV, and I would not change a single moment, risking all that I have gained.

  1. My Health Is My Priority

My health and happiness are my greatest assets and highest priorities. Living with HIV, I am more conscious of how I am treating myself as a whole—mind, body and spirit. That’s important.

  1. There is Support Everywhere

Although at the time of my HIV diagnosis I had no idea how, when, or to whom to disclose, I knew one thing for certain: I could not continue on this journey alone. People living with HIV are part of a community that is compassionate, supportive, and kind. In addition to my trusted support, a wide range of people are available to provide me with emotional support – peers, trained professionals and other people with a sympathetic ear.

Gratitude is something that doesn’t just benefit us people living with HIV – it has uplifting and healing properties for everyone. And a little bit goes a long way. What do you feel grateful for even when you might be going through a tough day or time? I challenge you, for you, to complete the sentence: “I am grateful for…because…”

However you choose to celebrate this time of year, my wish to you and those you hold close in your heart is a safe, happy and healthy holiday season.

Advertisements

The Power of Support

This entry was written by our BSW intern, Anita Peete

For good ideas and true innovation, you need human interaction, conflict, argument, debate.

-Margaret Heffernan

Untitled

The Boston Living Center is a place of comfort and support for so many people. The Center holds so much value to those who utilize the many services provided here. This is the one place that many of the members are able to find a sense of peace, hope, happiness, or joy. This past month that I’ve spent at the Boston Living Center has caused me to re-examine what life is all about: enjoying the many moments we experience with others.

The members come to the Boston Living Center because they are in need of support around situations that are occurring in their lives such as homelessness, medication adherence, relationship issues and other various pressures, but it is through groups like Bridges, G.L.E.M (Grupo de Latinos en Movimiento), meals, pottery class, beading class and so much more that for that moment the pressures of life do not exist. There is so much that impacts an individual that is HIV positive. This includes stigma, discrimination (although we want to believe it doesn’t happen anymore), the inability to work because of their illness. All of these situations have a major impact on how an individual who is positive views life, but when you have a place of support such as the Boston Living Center you are more likely to progress in a positive manner. Research shows that support groups and a strong support network helps individuals thrive. You are in a group with other people who are going through similar situations, and this is very important when it comes to those who are living with HIV. When someone is diagnosed with HIV, they may begin to isolate themselves or be ostracized by others.

I have witnessed this on many occasions, especially attending Bridges. While in Bridges, I have noticed the weight that is lifted off of so many members as they share and receive feedback from their peers on their struggles. It is moments like this that I am forced to enjoy. The overwhelming feeling of community here at the Boston Living Center is great to witness. There have been many times when I have seen small gestures of help being given, such as a member needing help carrying their take out downstairs and another member is quick to assist them.

Our daily interactions with others are vital to our continuous growth as humans. The strengths perspective is a theory that all individuals have something that is positive on the inside or around that can be used as motivation. A strong support is often an overlooked strength for individuals. The Boston Living Center is a part of many individuals support system.

There is power in our interactions that cause us to feel hopeful, appreciated, grateful or thankful. We are motivated to succeed when we see others succeeding. We are saddened by that which saddens a peer. We feel what others feel when we care for them. It is important for all of us to remember that we are not in this alone. We have each other and it is important that we utilize others when necessary. Marianne Williamson stated it best in her well-known poem entitled “Our Deepest Fear” when she stated the following:

As we let our own light shine,
we consciously give other people permission to do the same.
As we are liberated from our own fear,
our presence automatically liberates others.”

So continue to let your light shine and consciously give others the permission to do the same. It is through our interactions with others that we will liberate ourselves from our fears and our presence will automatically liberate others. I challenge you to take the time after you read this to get to know someone new. You just might be the light that they need!

Community Engagement: Beyond the Consumer Advisory Board 

Rob Quinn is a guest blogger and member on the Statewide Consumer Advisory Board at the Massachusetts Department of Public Health, Office of HIV/AIDS.

download

Two years after the first AIDS cases were reported in the U.S. in 1981, a group of men and women, most of them diagnosed with AIDS, gathered in Denver to demand greater involvement in the crucial decisions that were affecting their lives. They developed The Denver Principles, the cornerstone of the people with AIDS (PWA) self-empowerment movement.

From its origins in early HIV treatment activism in the 1980’s, the need for community engagement has attracted increased attention in recent years. This is largely due to the highly vocal demands of HIV activists, the recognition that inclusion and transparency are ethical responsibilities, and the fact that experience has shown that people living with HIV/AIDS (PLWHA), like me, provide a critical and necessary perspective on the development, implementation, and evaluation of programs and services that are designed to ultimately meet our needs as the consumers of those services.

Community engagement was given a working definition by the Center for Disease Control and Prevention (CDC) when its first edition of its Principles was published. The organization agreed that community engagement was:

“…the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the well-being of those people. … It often involves partnerships and coalitions that help mobilize resources and influence systems, change relationships among partners, and serve as catalysts for changing policies, programs, and practices.“

  • (CDC, 1997, p 9 – published in CDC, Principles of Community Engagement Second Edition, 2011, p. 3).

As defined by the CDC, “the goals of community engagement are to build trust, enlist new resources and allies, create better communication, and improve overall health outcomes as successful projects evolve into lasting collaborations” (CDC, 2011, p. 3).

Community engagement means bringing together PLWHA and other community stakeholders such as neighborhoods, communities, policymakers, advocates, governments, religious and cultural leaders, funders, international agencies and regulatory bodies to develop partnerships, address gaps and difficulties, and support families and individuals. Building on unique experiences and strengths, each stakeholder has a different role to play in the collaborative process of working towards optimal HIV health outcomes along the care continuum.

The Community Advisory Board (CAB) is one form of community engagement. CABs can play an important role, helping ensure that those of us most affected at the local level have a channel through which to voice our needs and concerns, and obtain information. Most CABs’ membership reflects the profile of HIV/AIDS in their community in terms of race, ethnicity, gender, sexual orientation, gender identity, mode of transmission, and geographic region. It is also vital to use other ways to engage and solicit input from the community.

Recognizing this need, the Massachusetts Statewide Consumer Advisory Board’s (SWCAB) community engagement practices have evolved over time. While still relying heavily on the SWCAB, we are moving in a new direction – identifying kinds of conversations for more consumer feedback and engaging a broader network of consumers. These conversations include drug user health, PrEP, gay men’s health, barriers to care and linkages to care. Moving forward other approaches, both formally and informally, may include consumer surveys, needs assessment surveys, interviews, focus groups, mobile meetings in targeted communities, suggestion boxes, consumer forums, public hearings and working groups, among others.

Engaging a community in discussion increases everyone’s level of awareness, allows individuals to advocate for their ideas, and offers a format to gather advice or guidance based on the community’s expertise and experiences. The diversity and the number of identified stakeholders are increased. Consumers and other stakeholders are educated on the issue and invited to contribute to the process, thereby expanding access to available knowledge and skills. When communities are engaged at the beginning and throughout the process they are apt to be more receptive to the outcome, have capacity to implement change, and may maintain long-term partnerships.

We PLWHAs provide a critical and necessary perspective on the planning, implementation, evaluation, and quality improvement of HIV/AIDS policies, programs and services that are designed ultimately to meet our needs. In my opinion, it is our responsibility to participate in community engagement discussions and decision-making that so significantly impact the lives of those of us living with, affected by or at risk for HIV/AIDS. Wherever you may be on the HIV disclosure continuum, there is an opportunity. Whether it be completing an anonymous survey, attending a consumer forum or educating Congress on HIV/AIDS—Your Voice Matters!

References

Center for Disease Control and Prevention (CDC). (1997). Community engagement: Definitions and organizing concepts from the literature.

Center for Disease Control and Prevention (CDC). (June 2011). Principles of community engagement. Second edition.

Welcome our new Bachelor’s in Social Work Intern!

Life is not a problem to be solved, but a reality to be experienced.

                                                                                       -Soren Kierkegaard

Hello BLC! Please allow me to introduce myself, my name is Anita Peete. I am currently a student intern here at the Boston Living Center. I am in my last year of working towards obtaining my bachelor’s in Social work and as a part of that I have to complete a field placement.  So I decided to come to the Boston Living Center to complete it.

I am very passionate about the work I do around HIV/AIDS and I felt it would only be fitting for me to come to the Boston Living Center, the beacon of hope for those living with HIV. The Boston Living Center is a place of comfort and security for so many people. I have been warmly received by staff and members alike, which has been extremely helpful in the process. Thank you!

I am excited to be at the Boston Living Center and I look forward to witnessing the progress that will take place for individuals and the Boston Living Center as an agency. I look forward to growing and learning more about who I am as a student social worker as well as a person. I am sure that my time here will be filled with rewarding and memorable experiences. Thank you once again for the warm reception!

Anita Peete

BSW Student Intern

2015-2016

 

A Story of Recovery and Resilience

 By BLC Guest Blogger Rob Quinn

September is National Recovery Month.

Untitled

National Recovery Month (Recovery Month) is a national observance that educates Americans about how addiction treatment and mental health services can enable those with a mental health and/or substance use disorder to live a healthy and rewarding life. National Recovery Month spreads the positive message that behavioral health is essential to overall health, that prevention works, that treatment is effective and that people can and do recover. I am living proof of that!

Join the Voices for Recovery: Visible, Vocal, Valuable! is the theme for Recovery Month 2015 and  highlights the value of peer support in educating, mentoring, and helping others. This year’s Recovery Month theme encourages “…others in the recovery community to: be visible—emphasize the prevalence of mental and/or substance use disorders; be vocal—share personal stories and be advocates for others seeking help; and be valuable—notice warning signs and symptoms and bring awareness to the resources available.” (Substance Abuse and Mental Health Services Administration)

I have this mantra: We talk, we share, we learn. Here is my story:

Today, I celebrate 21 years of surviving, living and thriving with HIV/AIDS, openly since World AIDS Day 2010. And to think that in 1993, when I was diagnosed HIV-positive, the Centers for Disease Control and Prevention estimated that newly diagnosed individuals would have a 7 year life expectancy. In 1999, it happened: my worst fear. I was no longer living with HIV—I had been diagnosed with AIDS. In year six of the seven years I was predicted to live, I was diagnosed with Kaposi’s Sarcoma (KS), which is a strain of skin cancer common to AIDS patients. Due to failing health, I was in need of an extended medical absence from my career. Short-term disability ensued, and then turned into long-term disability. I was not prepared for the darkness that would follow; with my professional identity stripped away, I lost the sense of life purpose I so valued and fell prey to addiction, subsequently attempted suicide, and ultimately hit my rock bottom.

In 2001, just weeks after 9/11, I left New York City and returned home to Springfield, MA — “to die.” But, I never missed a dose of my HIV/AIDS medications. So, upon reflection, I believe there was always a flicker of light within willing me to live. In Springfield, I did an addiction transfer from drugs. I gained 70-plus pounds–mainly the result of excessive alcohol consumption, a sedentary lifestyle and my loss of will to live. In early 2007, during one of my appointments with my nutritionist, she mentioned that I needed to become “accountable.” I knew at that exact moment that my nutritionist not only meant accountability in terms of my nutrition, but accountability in my life! The word “accountability” resonated with me. After trudging down a long, bumpy road, I became sober in 2007 and remain sober today! That was my turning point: the beginning of my recovery (after having previously relapsed once), the discovery of my resiliency, and a reinvention of me.

I was once again confident and beginning to think about a life purpose. Merging two worlds — that of my child life career and my personal journey — I started to make a difference in the HIV/AIDS community. I knew too well from my experience as a child life specialist the value of support, specifically peer support. I had always believed that the support given in child life should be available to adults in crisis as well, and now it was. The child life skills I learned at Wheelock College are transferrable to any arena. I have reinvented myself and applied my child life skills and personal challenges and triumphs in other settings, fostering hope and resilience in myself and others. In my speaking engagements, I frequently share that as difficult as it may be to stay on track during life’s hurdles, it’s a lot harder to fall off and try to get back on. I truly believe that we can all overcome and grow from obstacles when we learn to see them differently.

Today, I am a passionate, openly gay, HIV-positive activist, blogger and educator. During my 25+ year career as a certified child life specialist and my twenty-one year journey as a long-term survivor living and thriving with HIV/AIDS, I have evolved from being an unheard voice to a voice for the unheard. Through local and statewide activism, education, outreach and social media, I am increasing HIV/AIDS awareness and reducing HIV-related stigma. I am continually seeking additional opportunities to further my work advocating for increased awareness, ending HIV-related stigma, and the ultimate goal of an AIDS free society.

Learn More:

National Recovery Month
http://www.recoverymonth.gov/

Child Life Profession
http://www.childlife.org

Decisions, Decisions and Downsizing: Switching Over Highly Active Antiretroviral Therapy (HAART) Regimens

By Guest Blogger Rob Quinn

As a long-term survivor on antiretroviral therapy living and thriving with HIV/AIDS, I have thought countless times through the years of switching over to a new HAART regimen. Downsizing to one involving fewer pills to take each day with fewer possible side effects and fewer doses each day. The thought of one pill, once daily with little known side effects sounded almost too good to be true. On the other hand, I’m from the early days of HIV treatment in my thinking where we had few if any options. Thoughts of “if it ain’t broke, don’t fix it,” “side effects are just a way of life,” and “what about drug resistance?” created a barrier to this possibility. Sound familiar?

Untitled

It was at an AIDS Project Worcester, World AIDS Day 2013 event where Leif Mitchell, Senior Community Liaison, Boston/New England, Gilead Sciences made a presentation on the HIV Treatment Cascade. Part of his presentation included a discussion on engagement and retention in care. This included: HIV medications, possible side effects of both older and newer generation medications. I recall Leif indicating that with the newer generation medications, HIV-positive individuals experiencing medication-related issues, such as gastrointestinal, may no longer have to. This immediately caught my attention as I had been experiencing such unpleasant side effects for over ten years, often many times weekly. However as fast as it caught my attention, it lost my attention. I was just fearful of switching over. What if the newer medications don’t work? Why change if I am technically doing well (meaning I am virally suppressed) on my current regimen?

A month later at my first quarter 2014 routine appointment and blood monitoring with my infectious disease specialist Dr. Claudia Martorell, owner and director of The Research Institute in Springfield, MA , I was reviewing with her what was going on since my last visit and what I was currently experiencing, such as “my usual diarrhea.” Dr.Martorell said, “you never mentioned diarrhea.” My reaction was simply, “it is part of the journey.” Dr. Martorell echoed and reiterated what Leif had said just a month prior; “it does not have to be.” Dr. Martorell went to further evaluate if what I was experiencing was a side effect of the medications, and sure enough it was. After much discussion and thought, and more than a decade on my previous Highly Active Antiretroviral Therapy (HAART) cocktail of Kaletra and Truvada and still dealing with known side effects of lipodystrophy, lipoatrophy, gastrointestinal (diarrhea several times weekly), I made the decision to say goodbye to the old and welcome a newer generation cocktail of Tivicay and Truvada.

Why now? Dr. Martorell informed and reassured me that todays research shows that HIV-positive individuals, like myself, who are treatment adherent with their HAART, have a stable CD4 absolute count, and have a consistent undetectable viral load, can now switch over with an understanding that if for some reason their body does not respond favorably to the new HAART cocktail, he/she can resume their previous HAART cocktail. A few years back this was not an option for me, as there was a great likelihood of drug resistance. Having this new knowledge made me more confident in switching over. From past experiences, I knew the initial adjustment period for HAART HIV regimens may present many hurdles to clear. However, the time was now and I was ready! I took the next couple of months to physically, emotionally and spiritually prepare myself and my body for this newest path on my journey of living and thriving with HIV/AIDS.

Under Dr. Martorell’s close supervision, the first steps included final routine blood monitoring and now new baseline blood monitoring. For me, this switchover decision meant downsizing to two pills daily and with less known, if any, possible side effects over my current regimen. I recall early on in my journey twenty-one years ago taking upwards of forty pills daily, the first being AZT and at one time Norvir, which required refrigeration – side effects too long to list.

The decision of whether to change regimens and what to change to was complicated and a bit overwhelming. I have to admit I was a bit anxious about changing the life-saving medication regimen which worked so well for me for so long. On the other hand, I was looking forward to a “new color pill” that will undoubtedly improve the quality of my life. In partnership with Dr. Martorell, I made the decision to embark on this new path which I approached with great excitement and positivity. As an inspirational peer recently once shared, “Positive. Just like my blood…positive.”

Other than experiencing an adjustment side effect of insomnia, my body responded favorably!  The baseline switch over results – one month on new HAART Tivicay/Truvada combination: CD4 Absolute at 550 (stable), CD4% at 25.0 (up from 20.7%) and viral load remained consistently undetectable. Insomnia, a common side effect of Tivicay, only lasted about a month. Important to note was that within days my gastrointestinal issues ceased. Well, it has been over a year now and I am happy to report my June, 2015 routine blood monitoring findings: CD4 Absolute is stable, CD4% at 30.4% (a 9.7% increase), and I remain virally suppressed and without gastrointestinal issues!

It is imperative to note that medication effectiveness is only as good as medication adherence. Skipping medications gives the HIV the chance to multiply, increasing one’s viral load. Poor adherence also increases the risk of drug resistance. Therefore, before changing to new medication it is important to talk with our provider about adherence, if this is an issue.

Like everything else on my life’s journey, the more I put into managing my HIV, the more I will get out of gracefully aging  while being fairly healthy with HIV/AIDS. Unlike the early days of HIV, today those of us living with HIV/AIDS have so many viable options for starting or changing HIV treatment. It’s important to not only find another regimen that works for us, but one we can also live with. Lesson relearned: keep informed and up-to-date on medication advancements, new “recommended” regimens, and be sure to honestly share with my provider anything and everything as it relates to my HIV care and overall health and well-being. What was once “a way of life” or unpleasant medication side effect, such as gastrointestinal issues, no longer has to be. The choice is ours!

Thanks much Dr. Martorell and Leif. I am always moving forward and never looking back, except to see how far I have come.

A Farewell from Julie

Written by BLC Intern Julie Lee

As I get ready to leave the Boston Living Center, I wanted to reflect on some of the experiences I’ve had here and what I’ve learned. I can’t believe it’s already my last week here. I remember my first time walking through those large front doors – I was incredibly nervous because this was my first time doing an internship like this. I was new to Boston, and new to the BLC, and I had no idea what to expect. But I now realize that I had nothing to worry about. I felt truly welcomed that first day, and the members and staff have been so friendly to me every day that I’ve been here.

I’m glad that my internship had elements of direct interaction with members and also some work behind the scenes because it allowed me to do a variety of work. I really think that every conversation I had with a member, no matter how short, helped strengthen my ability to communicate with others and to just be a more pleasant person to be around. I enjoyed participating in the walking group, serving lunch on Tuesdays, and facilitating Game Day! I also really liked attending groups – Chat B4 Dinner and Bridges on Wednesdays – there was a real atmosphere of support every time we all gathered in the library, through the somber moments and through the joyous ones. I remember being ecstatic the first time I got to check in about my week, and I felt supported by everyone in the room.

I’ve learned a lot about HIV/AIDS – way more than I could have learned in any classroom at Dartmouth. I’ve learned about different types of government assistance programs that exist, like housing and food stamps. I’ve learned about HIV medications, healthcare organizations around Massachusetts, and healthcare policies. But beyond facts, I’ve learned some skills as well – through changing the bulletin boards every other week, I learned how to be a better researcher. I learned how to talk to people with different experiences than my own. I learned that even though we might have different priorities, or be busy, we all love a good game of dominoes.

I want to thank everyone who’s contributed to my experience here, even if it was just saying hello. Having grown up in a large city, I wasn’t used to saying hello to everyone I saw or even acknowledging their presence. Saying hello to everyone I saw in the BLC came naturally, though, because it’s clear that we’re here to support one another, and we care. Thank you for teaching me how important support systems are, and making a difference in my life. I hope that I was able to do the same, or at least brighten some of your days.

Thank you and best wishes,
Julie