Let It Go! Let It Go!

This post was written by BLC Guest Blogger, Rob Quinn

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Welcome Spring; a time of renewal. The season of new growth and the signs of change are all around us. This is a perfect time to pause, reassess your life, and make changes that are more appropriate and satisfactory for where you are right now. Stuff has a way of creeping into our life, and before you know it, it starts to take over.

As a long-term survivor not only living with HIV/AIDS but also thriving, I choose living a minimalist life of decluttered simplicity. For me, clutter affects my ability to focus, process information, and be productive. A happier, freer, more peaceful life promotes optimal health outcomes. Now that Spring has sprung, it’s time for Spring cleaning. Time for taking action to clear more space–physically, emotionally and spiritually.

Decluttering is a lifelong practice, one that we can repeat when needed. Decluttering, simplifying, simple living, minimalism–whatever you wish to call it–has health benefits. Clearing clutter provides me more clarity and focus. Less is more equals less physical and emotional stress. Opening up space affords me an opportunity to reach my full potential and thrive in a meaningful, productive, independent, and connected life.

There are countless online resources, self-help books and more on decluttering. Decluttering in four steps, five steps, ten steps, forty steps and more. However, living a minimalist life, I find that keeping decluttering simplified leads to successful outcomes. I ask myself a few basic questions, “What’s cluttering my life, why am I keeping it, and what parts of my life seem out of control? Is this stuff bringing me closer to my goal of optimal health and happiness or further away?” If the answer is the latter, then as Elsa says, “Let it go, let it go!”

Prior to March 9, 2016, at the end of each day I would ask myself, “Why I am up at night, tossing and turning, my mind racing?” Maybe it’s aging, wisdom, having had an implantable cardioverter defibrillator performed on March 9, 2016 due to HIV-associated cardiomyopathy, or a combination thereof, but today I have zero tolerance for any negative energy in my life. Person, place or thing. In the past, I can assure you that the source of my sleeplessness was most likely getting a restful night’s sleep, not being awake thinking of myself. Now, cue Elsa, “Let it go, let it go!”

At the end of the day, the only person I can be accountable for is me. Now each morning I ask myself, “What stuff deserves my time, my focus and my attention?” The answer, “The stuff that I am responsible for, can control, and can do something about.” And NOT the stuff that I am not responsible for, don’t control, or can do very little about.

Note to self: Remember, today is your day to let go of stuff that no longer serves you. Let it go, let it go!

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Time for a HAART-to-HEART

Written by BLC guest blogger Rob Quinn

Along with Valentine’s Day and Black History month, February marks American Heart Month, a great time to open up the conversation around HIV and cardiovascular health. When someone fashioned the handy acronym HAART (Highly active antiretroviral therapy) in 1996, very little was known about long-term side effects, if any, or the connection between heart disease and HIV medications that we know today. Who knew HAART would put some people living with HIV/AIDS (PLWHA), especially long-term survivors, at a higher risk for HEART disease? One long-term PLWHA being me. This is my story.

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At age 56, it has been 22 years since I was diagnosed HIV-positive, and 16 years since I was diagnosed with AIDS. I currently take fifteen medications daily, even having downsized over the years to only two pills for HIV. The rest of my prescriptions, a crowd of white-topped orange plastic bottles, are to treat the many ailments and conditions that are a result of aging with the virus, along with years of taking the sometimes toxic medications to treat it. Being a long-term survivor, I face a myriad of challenges rooted in HIV. My highest hurdle to clear right now is a recent diagnosis of HIV-associated cardiomyopathy and coronary artery disease. My cardiac cocktail consists of five medications daily–a flashback to my early days of HAART. My recent relocation back to Boston last fall was in large part due to my own need for the more intensive medical care and the support services to PLWHA, the latter including a peer-led long-term survivor support group.

 

In 1986, my Dad, at age 53, passed away suddenly and unexpectedly from congestive heart failure. My recent diagnosis of HIV-associated cardiomyopathy and coronary artery disease brought me back to 1999, a dark place in my life and when I was diagnosed with Kaposi’s sarcoma (KS), a strain of skin cancer common to AIDS patients. That year I suffered a heart attack related to chemotherapy treatment for KS. Just like back in 1999, I recently saw HIV as a death sentence again. What if I wasn’t HIV-positive? If I wasn’t a long-term survivor who took countless older generation HIV medications which we are now just seeing the side effects of? What if I were diagnosed HIV-positive today with access to the newer generation medications? My thoughts, although cognitive distortions and not rational, were real to me.

 

My cardiology team at the Institute for Heart, Vascular and Stroke Care at Massachusetts General Hospital in Boston recently recommended that I consider the strong possibility that I will need an implantable cardioverter defibrillator (ICD), a small device that’s placed in the chest or abdomen, in the very near future. Doctors use the device to help treat irregular heartbeats called arrhythmias. As a gay, HIV-positive man already dealing with body-image issues resulting from lipodystrophy and lipoatrophy, the thought of an ICD protruding from my chest was just too much for me to cope with.

 

Initially I wanted nothing to do with this potentially life-saving medical intervention. I was done! Many times on this journey I have asked myself, “when is enough enough?” After much trusted support from family, my healthcare team, friends and peers living with HIV/AIDS, I came to the realization and made an informed decision that it is in my best interest to proceed with the recommended ICD. If this technology was available to my Dad 29 years ago, I believe he would still be alive. I believe if my heart disease was found to be genetic, that I would have coped with this experience differently. I have known since losing my Dad that I was genetically at a higher risk for developing heart disease. However, it wasn’t until after genetic testing, thyroid testing and a second angioplasty to rule out additional blockages (all of which came back negative) that I was diagnosed with HIV-associated cardiomyopathy and coronary artery disease.

 

Heart disease remains the leading cause of death in the United States, regardless of HIV status. The good news? Heart disease can often be prevented when we make healthy choices and manage our health conditions. Prevention is the best medicine. So, regular monitoring by our providers of our overall and cardiovascular health should be part of our plan for living longer and living well. Getting on treatment for HIV is one of the best things we can do to stay healthy. Scientists say that newer antiretroviral drugs may be easier on our heart. If you are HIV-positive, check with your healthcare provider to find the best HIV medications for you. While we cannot control all of our risk factors for heart disease, there is a lot we can do to reduce our risk such as quitting smoking, improving our diet, exercising regularly and stress management. By setting small, achievable goals and tracking those goals, we can make a big and lasting difference in our health.

 

In closing, I again no longer see HIV/AIDS as a death sentence and believe that I can still live a long, healthy life if I commit to making a few changes and respect my heart condition. I have always been a non-smoker. Already having successfully overcome multiple high risk factors, including an alcohol addiction and morbid obesity, along with being virally suppressed for years, I am in a good position to reach my full potential and thrive in a meaningful, productive and connected life.

 

“We are human too!”

This post was written by our BLC intern, Anita Peete.

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I had the pleasure of sitting down to talk with one of the Boston Living Center’s longtime members. This member did not want their identity to be disclosed, but as you read the conversation you will see that they had a lot to say. For privacy purposes, their name and any other identifying information has not been used.

How long have you been positive?

“I was diagnosed Jan. 8th 1992. So that makes it 14 years.”

What was your reaction?

“I wasn’t surprised or shocked. I was scared for one thing. I was dating someone and I didn’t want to tell him. I cried like a baby when I was told because I was hurt.”

What motivated you to keep living after your diagnosis?

“My family.”

How did your family react to the news?

“My family was very accepting and understanding.”

Do you remember the first person you told?

“Yes. The guy I was dating.”

You have been living with this virus for 14 years, what keeps you going?

“God’s blessings. This is my second chance at life. Being a recovering addict and also being diagnosed with HIV, how is that for a hell of a combination? Life itself [keeps me going].”

What are you hopeful for yourself as well as for the future of the virus?

“I just plan to keep on living. I thank God for every day that I am still alive. I hope I can live to see a change when it comes to HIV being so stigmatized. We get looked at like we are a walking disease. They don’t twist cancer or any other disease. But as soon as you mention HIV you are looked at crazy.”

What are some words that you want to leave with those who read this?

“Understand that we are people too. We have feelings just like you do. Don’t look at us any less than you would anyone else. We are human too!”

**Anita’s note**: There are a lot of people that do not experience the support and love of family members like the member interviewed here. I am hopeful that one day families and friends will obtain the necessary knowledge so that they can fully support their loved one that is positive. As a community, it is our job to continue to speak up and speak out on behalf of those who are positive. We must educate those who do not know, so that they do know. Education is key!

Living Positive with Purpose

This post was written by BLC guest blogger, Rob Quinn

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In 1999, I was diagnosed with Kaposi’s sarcoma (KS), a form of of skin cancer common to people with AIDS. Having previously been diagnosed HIV-positive in 1993, I now had an AIDS diagnosis. Short turn disability ensued, turning into long-term disability when I suffered a heart attack related to chemotherapy treatment for KS.

I was not prepared for the darkness that followed. My professional identity stripped away from me, I lost the sense of life purpose I so valued and fell prey to addiction. In early 2007, during an appointment with my nutritionist, I remember her mentioning that I needed to become “accountable.” I knew at the exact moment in time that my nutritionist meant not only being accountable in terms of my nutrition, but being accountable in my life! The word “accountability” resonated with me; after trudging down a long, bumpy road, I became sober later in 2007. That was my turning point: the beginning of my recovery, the discovery of my resilience, and a reinvention of myself. I was starting to think about a life purpose to improve chances of a longer, healthier life.

In addition to the emotional and psychological benefits, having a sense of purpose is correlated with lower stress, better health outcomes and an improved overall sense of well-being. Maintaining a sense of personal control — even in the face of difficult situations — improves health outcomes. In this guest post, “purpose” refers to work–which includes work, work reentry, volunteerism and/or pursuit of higher education. I truly believe that we can all overcome and grow from life’s hurdles when we learn to see them differently.

New advances in HIV treatment have effectively made HIV a manageable chronic disease. People living with HIV/AIDS (PLWHA), like me, who maintain a positive outlook on our future, may manage stress better than those who do not, leading to improved coping behaviors and optimal health outcomes. Today, early diagnosis and powerful HIV drugs mean we are living long, healthy and productive lives. With proper care and treatment, many PLWHA lead normal lives, including work. Most PLWHA can continue working at their current job, look for new employment opportunities in their chosen field or even consider a career change. And with improvement in morbidity and mortality, PLWHA, including long-term survivors, are increasingly contemplating a return to the workplace.

However, despite compelling reasons for workforce (re)entry, a number of issues and concerns impact HIV-positive individuals transition from disability/unemployment to the workplace, and may actually contribute to overall declines in health outcomes. These issues may include disclosing one’s HIV status, the reality of HIV-related prejudice and discrimination, the fear of stress, and the challenge of balancing health, appointments, connection to services, identity and relationships.

In my opinion, the working HIV-positive community is an underserved community when it comes to accessing some services, particularly support services. Many local AIDS Services Organizations (ASO) currently operate weekdays, 9am-5pm, making it difficult if not impossible to access services. Although many of us may be virally suppressed, are retained in medical care and have stable housing – and are therefore not considered “vulnerable” – we do have needs. Because of this, do ASOs really know what the needs of this population in our community are if they never see or hear from us?

Recognizing this gap in services, The Boston Living Center’s (BLC) BLC Academy, a collection of workshops on job readiness, computer classes and a HiSET (High School Equivalency Test) test prep program for people living with HIV, will launch Working POZ. Working POZ is an evening biweekly peer-led (by me) support group for HIV-positive people to talk about balancing work, health and identity. The group meets the 2nd and 4th Monday of every month starting February 22nd from 6:00-8:00pm, with dinner being served from 6-6:30pm. To sign up or for more information, call/text (857) 400-9052, email: mphillips@vpi.org, or stop by the BLC front desk.

Working while living with HIV/AIDS presents its own challenges, but for those of us who can, it pays off—and not just in the bank account. People who live with purpose are able to find meaning in the things that happen to us…hence my reinvention as an HIV/AIDS activist and educator. With “my OCD”: not obsessive compulsive disorder, but rather Optimism, Confidence and Determination, I will continue to improve the quality of life in the HIV/AIDS community, including my own, by raising awareness and reducing HIV-related stigma.

How will you inspire a world of good?

 

A Final Word From Tia

Did you know that African Americans have been estimated to have 44% of all new HIV infections? Men in general have been estimated to have 70% of all new infections. For some reason, these numbers did not surprise me – they instead made me think of questions such as: why is the black community at higher risk of getting infected? Is it based on our history?

The first day I arrived to BLC, Morrigan, the program director, sat me down in a room with paper, packets, and articles on HIV. She wanted to make sure I understood and was familiar with HIV and how it is impacting our community. A lot of the articles I read were survey based and showed the same conclusions.

African American male youth age 13 -24 was estimated to have over 5000 new HIV infections, the highest amount on the bar graph in the article I read. Hispanic / Latino and white males followed behind them with about 2,000 new infections, less than half of an African American male. Then came the woman; although African American females had only one forth new infections compared to an African American man, when compared to females of other races their number was about five times more.

The fact that African Americans are leading with the highest new HIV infection relates back to history because HIV is not the only thing that affects people of color. They have to deal with things such as: high rates of poverty, stereotypes, and lack of access to resources. African Americans have been on the bottom of the socioeconomic ladder for years, starting with slavery. That was a time when they were not only dehumanized but had to step up and prove their worth. Racism and negative stereotypes arose and have followed them for centuries. Also for some people of color trying to access resources for HIV can be problematic, especially if they are either homeless, ashamed of their sexuality, or uneducated on the virus.

After reading the articles those thoughts were my take aways; however, I wonder what others’ initial thoughts were as well. Why do you think African Americans are leading with the highest new HIV infection rate? Is it based on history ? How can the community and organizations such at the BLC contribute? These are questions we need to answer and discuss in order to bring awareness and help lower the HIV infection rate for people of color.

 

Tia’s at the BLC: Part 1

Tia's pic    Hello, my name is Tia Murray. I am a highschool senior at a small charter school, Codman Academy. My school requires every student to complete two internships, one as a junior and the other as a senior. They believe it is important for students to go out and take on real jobs in order for them to learn how to be responsible. Also, as college is the next step in our lives, these internships give us an insight on what it would be like to join specific fields.

My mom inspired me and was the key factor in why I want to join a field such as social work. When I was younger, I struggled to cope with how little I saw her. As a single mother of three she was constantly working in order to provide us with everything we needed. She made no excuse, we were her priority. As a senior in high school, and still to this day, it amazes me how she was able to not only support us but have the time to give back. When we took family trips back to my birthplace, Jamaica, my mom always brought  barrels with her. Inside of these containers was cooking oil, rice, clothes, etc. She would then share it with the people who lived in our community on the island. My mom never forgot about where she came from. Even though she did not have a lot of money, she knew there were families who struggled more than ours.

I am at Boston Living Center shadowing Morrigan because I want to see what it feels like to be a social worker. I want to be able to take part in activities such as yoga and art in order to get to know the members more. I believe everyone one has a story and a purpose and it would be a pleasure to be able to build relationships within this community so that I can learn more. An experience like this will never be forgotten, it is a step in building my future.

I have only been here for three days but I have learned so much. The first day was more informational. I read articles on HIV and was introduced to the staff. The second day I felt like a businesswoman, traveling from one location to another for meetings. I really appreciated having the opportunity to sit in on these discussions. The first group was representatives from different organizations coming together in order to discuss what they have been doing and different ways to get the youth more involved in the fight against HIV. My second meeting took place at Boston Living Center with the members from CAB (community advisory board). Apart from their humorous personalities, I was intrigued by their rigorous ideas on how to improve the program. The third day was more hands on than any other day because I was in the kitchen. I learned how to cut different vegetables and then was able to serve the food. During this time I conversed with the kitchen staff and volunteers where I got to know them on a more personal level.

Though I am only in my first week, I already feel some sort of acceptance and bond from the BLC community. I am excited and honored to continue to participate in activities and meetings in order to better understand this organization and its purpose.

ALL THAT “JAZZZ”

This post was written by our BSW Intern, Anita Peete

“Not to fear it. Try to understand it. Accept that it is among us. The best way to fight it is to come together.”

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While here at the Boston Living Center, one of my main goals is to get to know members on a collective level; but even more on a personal basis. In order to fulfill this goal I sat down with a member of the Living Center named Jazzz. It was a pleasure to have the opportunity to get to know Mr. Jazzz, with an extra “Z”!

Jazzz is originally from Lewiston, Maine. He lived there until the age of 19. Jazzz has been a member of the Boston Living Center for the past 4 years. Although at first he wasn’t interested in coming to the Center, even after knowing so much about it; he came to the realization that it was “difficult to maintain the day to day routine.” He needed the support of those who fully understood what it means to live with this virus. No one understood what he was going through, so he came to the Center in order “to be in touch with the community. Those who were living with HIV.” Other ways that Jazzz works to maintain his life on a daily basis is through various hobbies. His hobbies include writing poetry and short stories, painting, being a member of the acting group. He also loves traveling, especially international travel. He has been to 5 different continents in his lifetime. He even had the opportunity to study in Mexico.

Just like the music, there are many levels to the person that is Jazzz. I discovered that he recently retired from teaching in the Boston Public Schools after teaching for 27 years. He taught everything from general education to Bilingual education. Yes! Bilingual education! Jazzz is fluent in Spanish! His best advice when learning Spanish is that you go to a Spanish speaking country and immerse yourself in the culture to learn the language.

Jazzz is a very vibrant and well-rounded individual. It was a pure joy to be able to sit down and get to know the wonderful soul that is Jazzz, with an extra “Z”! In closing, I asked Jazzz what he wants the world to know about HIV and those who live with it. His response was “Not to fear it. Try to understand it. Accept that it is among us. The best way to fight it is to come together.” Americans as a society has been known to come together in order to fight injustices, so it is important that we continue our fight against HIV, so that we can get to zero! It is because of the brave men and women, Like Jazzz, who share their stories that others are able to start to tear down the walls of stigma.