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!

A Story of Recovery and Resilience

 By BLC Guest Blogger Rob Quinn

September is National Recovery Month.

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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?

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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.

Guest Blogger Rob Quinn: Our Voice Matters!

By Rob Quinn

On April 13 and 14, nearly 400 HIV/AIDS advocates from 30 states, Puerto Rico, and Washington, traveled to Washington, D.C. to AIDSWatch 2015, the nation’s largest annual constituent-based national HIV/AIDS advocacy event.

It was so inspiring to be among these members of our community, including my fellow members of Massachusetts Delegation, to share our journeys of living positive with over 200 Members of Congress to educate them about the important issues at stake for people living with HIV/AIDS in the United States. My twenty-one year journey as a person living and thriving with HIV/AIDS has evolved from being an unheard voice to a voice for the unheard. This year’s ask included: Protect, Fund, and Support Implementation of the Affordable Care Act (ACA); Ensure Ongoing Investment in the Ryan White Program; Modernize the Housing Opportunities for People with AIDS (HOPW) Program; Remove the Ban on the Use of Federal Funds in Support of Syringe Exchange; Support Adolescent Sexual Health Promotion Programs and Eliminate Federal Abstinence-Only-Until-Marriage Programs; Support the REPEAL HIV Discrimination Act; and, Ensure Funding of a Comprehensive Federal Response to HIV and AIDS.

This experience was a strong reminder of how grateful I am to be living and thriving with HIV/AIDS in Massachusetts. As a member of the Massachusetts AIDSWatch Delegation the past two years, I have come to relearn that Massachusetts, in my opinion, is the platinum standard for HIV care in the United States, which includes HIV prevention, testing, treatment, medical case management, and other health and social services.

My health and happiness are my greatest assets and highest priorities. The foundation on which I continue to build these is through Massachusetts’ affordable housing.  Housing is healthcare; it is fundamental to our overall health and well-being and improves quality of life. Next on my priority list is access to healthcare, which includes world-class academic medical centers that offer outstanding patient care, as well as expert providers that understand the most advanced developments and break new ground with ongoing, innovative research. Continuing on is access to approved lifesaving drug treatments. This in large part made possible through the Massachusetts HIV Drug Assistance Program (HDAP), designed to help those of us who cannot afford to pay the full cost of the lifesaving HIV-related drugs we need. HDAP helps pay for my medications and Medicare Part D health insurance through the Comprehensive Health Insurance Initiative (CHII) program.

Essential to anyone’s overall health, regardless of HIV status, is oral health. I, like many others, am underinsured and do not have dental insurance. Those of living with HIV are at special risk for oral health problems. Many of these problems arise because our immune system is weakened and less able to fight off infection. Massachusetts to the rescue again!  The HIV Dental Ombudsperson Program (HIV DOP) is a comprehensive dental access program for persons with HIV/AIDS in Massachusetts, funded under Ryan White Part A and with funds from the Massachusetts Department of Public Health.

Lastly, having recently relocated to Boston and as an aging HIV-er, one of my primary concerns is accessing medical case management and other health and social services for people living with HIV/AIDS. Thankfully, there is strong sense of community and belonging that Massachusetts, Boston in particular, offers.

AIDSWatch 2015 may be over, but our advocacy for increased awareness, decreased stigma, and the work towards an AIDS-free generation must continue. Let’s keep the momentum and conversations going. Advocate on behalf of yourself and our community. You can use the power of your voice and journey to make a difference right here at home, in the Greater Boston area. To find out whom your state Representative and State Senator are, type in your address at http://www.wheredoivotema.com/bal/myelectioninfo.aspx. To get the contact information for your State Senator and State Representative, go to https://malegislature.gov/People/Search.

You can also get involved locally with Project ABLE (AIDS Budget Legislative Effort) a statewide coalition of AIDS service providers, advocates and people with HIV/AIDS. Since the early 1990’s, Project ABLE has successfully increased state funding for HIV/AIDS by working effectively with several governors and their respective administrations, the Massachusetts legislature, and through mobilizing a grassroots network of HIV/AIDS service providers, advocates, and people with HIV/AIDS. Much thanks to Project ABLE’s efforts, just last week the Massachusetts Senate Ways and Means budget proposal for Fiscal Year 2016 added  approximately $800,000 to the HIV/AIDS/HCV Line Item (4512-0103) over this year’s funding and over the final House budget for Fiscal Year 2016. The Senate funded the line item at $33 million. This is over a $3+ million increase over the Governor’s budget for the line item, which he funded at $29.9 million. This is the largest increase in funding for HIV/AIDS/HCV in several years, and it is great news. Please contact your state senator to thank him/her for supporting funding at $33 million for the HIV/AIDS/HCV Line Item (4512-0103) in the Senate budget.

Whether or not you are directly impacted, we are all affected by HIV/AIDS. We are advocates united: issues over egos; solutions over personal gains.

Link for AIDSWatch 2015

http://www.aidsunited.org/Policy-0024-Advocacy/AIDSWatch-2015.aspx.

Link for Project ABLE

http://projectablema.org/

Tune in every 4th Friday to read more from Rob! 

“Ebola has nothing on HIV”

By Nick Emard

On Thursday, October 16th (our Third Thursday Forum- ask us about them!) we continued with the BLC’s “End The Stigma. End HIV.” campaign by having a discussion panel addressing stigma in the lives of people living with HIV/AIDS. Our panel included a diverse group of individuals, each with their own experience and perspective on HIV-related stigma. Of our distinguished guests we had: Dr. Stephen Brady, Catrina Cooley, and our very own Ed Jacobson. Dr. Stephen Brady is a professor and psychiatrist at Boston University’s School of Medicine; he works specifically with the Mental Health Counseling & Behavioral Medicine Program. His area of research interest is HIV/AIDS risk and mental disorders. Catrina Cooley works for the Multicultural Aids Coalition (MAC) but has been involved with HIV/AIDS work and advocacy for over 16 years. Ed Jacobson, a member here at the BLC, was recently diagnosed with HIV and gave his perspectives on being HIV positive at the age of 76. As you can see, we collected a dynamic group who, through their own experiences and perspectives, spoke about stigma in today’s epidemic.

You may be wondering, wait, who are you? Why are you writing about this stigma panel? Well I’d be happy to tell you… (If you don’t care, please skip to the next paragraph). I’m a Medical Anthropology student at Boston University’s School of Medicine. I’m interning at the BLC because I will be doing my Master’s thesis on the HIV/AIDS stigma. Specifically, I plan to address the intersecting layers of stigma and how they construct identities with the HIV/AIDS communities. I’m working under the lovely and talented Morrigan Phillips and Caitlin O’Gallagher. Together we plan to address stigma through the BLC’s “End The Stigma. End HIV” campaign. Enough about me; lets move on to more important things.

Caitlin and I facilitated the panel, which mostly consisted of Caitlin doing all the work while I provided my beautiful looks and somewhat decent handwriting. I was the Vanna White to her Pat Sajak; together we spun the wheel of stigma and discrimination. We began the panel by addressing how the audience members define stigma and how it affects their daily lives. From there we had discussions with the panelists and fielded a question and answer session where members addressed the panelists with inquiries. To end, we looked at ways in which stigma can be alleviated from future generations. From our discussion the following topics emerged:

The New Face of the Epidemic
Over the years, the face of the HIV/AIDS epidemic has changed. People, nowadays, don’t see being HIV positive as a death sentence. However, HIV isn’t immediately detectable when you look at someone; you cannot see it, which causes people a lot of anxiety. Instead of overt discrimination, many people face the pervasive, insidious stigma that is often “behind closed doors”. This often manifests as stigma in dating and relationships, access to care and treatment, and interpersonal interactions. In addition to these areas, many HIV positive individuals face intersecting stigmas from other areas of their lives, whether from being gay, using drugs, or being an ethnic minority. These identities also intersect and combine (ie. gay male who uses drugs) which creates multiple layers of stigma and discrimination. Navigating these layers can be stressful and emotionally draining.

Disclosure and Relationships
Online Dating– What do you gotta do to get some action? Who do you gotta do to get some action? How can you get some action? As we all know, just because you have HIV doesn’t mean sex is off the table. Many people still want to have active sex lives and many times online dating is a way to facilitate that. What happens when you actually meet someone? Do you disclose and see what they say? Do you provide your status up front? Do you wait to meet the person and see how things go? All are valid questions and each depends on the situation and the person. However, in todays Grindr, Tinder, Craigslist, or whatever you employ to find a date, there is a need to be “DDF” (Disease and Drug Free) “UB 2” (you be too). For someone who has HIV that just isn’t an option. This stigma of “UB 2” often forces people to either 1. not disclose or 2. be further stigmatized. In combating stigma, addressing these situations and finding out ways to work around them may be beneficial.

Relationships– Who cares about dating? You’re done, you want to live your life, forget the dating world (for the time being). You want to spend time with your family and friends. However, many times people are often unaware of what having HIV means, what causes transmission, and how to act around someone with HIV. Discussion around what it means to be undetectable and the stigma that family members and friends often emit can really affect someone with HIV. It’s important to address these areas, to have discussions with your family, and educate people on what living with HIV actually means for your relationships.

Identities
Yes, HIV changes someone’s life. However, it does not need to define them. Many people expressed the need to go on living their lives, that they were not just someone with HIV. They are fathers, brothers, friends, sisters, wives, husbands, partners, PEOPLE. In order to understand stigma, these identities need to be recognized and emphasised. Agencies like the BLC allow an outlet for people. As Catrina Cooley says, “Stigma is torn apart because you can go to a place where everyone knows your name.” (Cheers!) However, taking this and adapting it into ‘real world’ setting can be challenging and frustrating.

The panel ended in looking at ways to prevent stigma for future generations. In doing so, there was an emphasis to “meet people where they are”. This can be taken in two ways. One, meet people where they are physically, go to their locations: bars, grocery stores, college campuses. This way those working in the HIV community can help get people tested, distribute condoms, and advocate. Second, meet people where they are mentally and emotionally. Facilitate models for people to help disclose, navigate relationships, help people create discussion with partners and families about what it is like to live with HIV and how they can move from there.

As you can see, the conversation was robust. Stigma is something that has been apart of the HIV/AIDs epidemic since its origins, but it doesn’t have to remain that way. As addressed at the national AIDS conference, ending stigma may be one of the quickest ways to end the epidemic.

This stigma panel is just one of many discussions that will be ongoing at the BLC regarding HIV-related stigma. Please join us on the Third Thursday of every month to talk more about stigma and many other public health, advocacy, and policy issues. Upcoming topics include HPV and HIV, HIV and Nutrition, and Understanding Your CORI Rights. We look forward to seeing you at the BLC!