I Did It: I Reached Menopause

liz margolies

 

 

 

 

 

Founder and Executive Director,
National LGBT Cancer Network

As published on Huffington Post’s new LGBT Wellness blog, see original at: http://huff.to/1lWNny6

I am in menopause. Unlike my other “I Did It” columns, this is not a description of a personal health challenge, as menopause occurred on its own. This is a coming out story about a life transition that has remained nearly unmentionable, even in queer circles. After successfully separating sex from reproduction, our community seems to still carry residual fear and aversion to the end of fecundity.

I always had a conflicted relationship with my period. At first I longed for it. I was the last among my peers to get her period, causing many years of secret worry that I wasn’t a real girl, exacerbated by being skinny and flat-chested. The long-awaited drip finally arrived the month before I turned 15. When I announced it to my mother she too expressed relief. Womanhood, here I (finally) come.

It was downhill from there, as I never mastered control over the leaking blood. It descended without warning after an unpredictable number of days. The flow would start and stop and, just when I was sure I was done for the month, I’d drip again. I experienced my period as a mopping failure. In a total of approximately 350 lifetime periods, I don’t think I made it through one of them without a leak or stain.

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Biologically, the point of it all is reproduction, and I had to remember that in my occasional dalliances with men. Living as a lesbian most of the time, I was encouraged to embrace my period as a womanly connection to the cycles of the moon. But, instead, my irregular cycles made the lunar identification impossible and later confounded my insemination attempts when I struggled for more than a year to get pregnant.

In my twenties, as a good second-wave feminist and environmentalist, I tried the menstrual sponge. Yes, it was an authentic, reusable, irregularly shaped blob of sea sponge. I purchased it at a health food store. It sounded promising but I didn’t foresee the humiliations of dealing with the sponge in a public bathroom. In the stall I had to reach inside myself to remove the bloody sponge. Holding it in one hand, I had to pull up my pants and flush with the other. Next, I carried the sponge out of the stall and washed it in the public sink (rinse and squeeze, rinse and squeeze, until the water went from red to clear). I could feel the horrified stares from the other women, followed by their disbelief when I carried the sponge back into the stall to re-insert it. By this point my stores of feminist bravery were completely depleted. The menstrual sponge was a short-lived phase.

Perimenopause is the term for the years before actual menopause; when the hormones that regulate our periods and moods get kind of wonky, before they conk out for good in menopause. Then, in addition to the unpredictable and unmanageable periods, I was assaulted with insomnia, night sweats and loss of my short-term memory. Word retrieval was an epic challenge. Perimenopause was a hellish phase, but it eventually passed, and my memory, vocabulary and sleep returned to normal.

One would think that, after all this, I would have noticed the arrival of menopause but I didn’t. I only realized the horror was behind me when asked by a doctor for the date of my last period. “Hmmm…” I answered, “Now that I think about it, I haven’t had a period once since my mother died and she died… a year ago.” Had I noticed, I would have celebrated. Twelve months without a period is the official definition of menopause.

What’s it like? Menopause is freedom. It’s been 10 years now and I have never looked back. I face forward with a confidence that every day will be the same; that my mood will be stable and nothing will ruin my pants or my plans. And, despite the myths of a withered life on the other side of the period, I still care about how I look, I still have sex, and I still have a fairly good body. My shape has changed in ways I find baffling but it is absolutely worth it. I am free.

I have shared much of this information with queer women in my age bracket, but have hesitated to speak of it with younger women and gay men. My silence can be traced to two powerful social forces: ageism and the “ew” factor associated with women’s bodily fluids. Perhaps, our community carries a leftover heterosexual shame about no longer being of reproductive age and, therefore, feeling less desirable to others as a sexual partner. The silence on the subject is dangerous and contributes to an unnecessary fear of menopause. In my case, menopause has been nothing short of liberation.

I Did It: I Made A Will

liz margolies

 

 

 

 

Founder and Executive Director,
National LGBT Cancer Network

As published on Huffington Post’s new LGBT Wellness blog, see original at: http://huff.to/1truSXM

 

I don’t want to die. I am healthy and active and merely 61-years-old. My 86-year-old father is a nationally ranked tennis player, reinforcing the belief that if I keep eating and living well, my genes will take me past 90. So, until now, I felt justified in postponing writing a will. Everything involved in creating one seemed hellish to ponder.

I have some money saved, but my biggest asset is the coop apartment I own in NYC. It is my deep love and my sanctuary. Once I’m dead, it will be instantly transformed from a beloved home into a series of onerous chores for others; someone has to clean it out, sell my stuff, list the apartment for sale, and distribute the proceeds.

Sell my stuff? Who am I kidding; my things are of no monetary value to anyone but me. I think of myself as a curator of found objects, carefully choosing and displaying old discarded items in ways that please me when I look at them: an old Duck Food sign, a red tin bucket, 15 broken clocks, a child’s toy sewing machine, a 1962 pennant from the Grand Canyon. Each thing is a memory or treasured fantasy to me, but their value surely dies with me.

I am no better at thinking about people who will survive my death. My son will turn 22 next month; he is a mercurial artist whose entire life has been a hopscotch board of crises, a third of which have been life threatening. Who will run or fly across the world to save him when I no longer can? My partner has three children of his own and lives out of state with them. If I imagine him re-marrying, I am filled with resentment. When I imagine my friends getting together without me, I am filled with FOMO.

Then, two weeks ago, a Facebook friend posted a link to a blog and I immediately recognized the face in the photo as belonging to my dear friend, Jo. She was forced to move back to the UK after the immigration laws tightened here post 9/11. We ultimately lost touch about 10 years ago. In that time, I now learned, she was diagnosed with ovarian cancer and is currently fighting for her right to die with dignity, at her own hands, in her own time frame. Soon. I reached out and we reconnected instantly.

Yes, it’s an odd time to (re) find a friend, as she is in the process of dying and leaving me again, but our interactions have been profound and I am incredibly grateful for this time together. In sharp contrast to my whining about my death and the subsequent poor fate of “my stuff”, Jo is focused on her survivors. Her heart breaks for the pain her illness causes her mother, and she has planned a death scene that she hopes will soften the grief for her sisters and friends. (She spoke eloquently about this on British television the other day.)

Jo’s courageous fight for her death woke me up to the responsibility I have to those I love. Although, today, I have no idea when I will die or how, I owe it to my son and my partner, family and friends to make plans, to make a will. It is an act of love for them, not a befriending of the grim reaper.

I called Carrie and Elisia Ross-Stone, the two lawyers who own Rainbow Law, and asked for their help. I knew that they started the organization in 1999, soon after President Clinton signed DOMA, to help all LGBTQ people get their legal “ducks in a row”. They still give away advance directives (DPOA, living wills and medical powers of attorney) for free, and offer 6 basic legal document packages — specific to state laws — designed to fit a variety of circumstances and queer family types, all for insanely low fees. It’s possible to fill out most of the required information online, but I decided to call and have them hold my hand through the decision-making.

Planning my will wasn’t fun, but neither was it difficult. I faced all the odd facts that are my life, including who most needed my financial help, who could be trusted to climb the paperwork mountain that being an executor might be, and how to honor, in will-language, the many people who have loved and supported me throughout my life. Carrie and I spoke for an hour. She had a way of making something scary and legally daunting into a gentle, intimate and kind conversation. Based on what Carrie told me, I probably should have set up a trust, but I think I reached my planning limit this round.

I am waiting for the rough draft of my will to arrive by email. I already think there are some changes I want to make before I sign it, and I know Carrie will be fine with that. Once it’s complete, I plan to tell Jo that she has inspired me to think of my death and take care of my survivors. Her plan, assisted suicide, is illegal in the UK and in 45 states here, all the more reason to take advantage of the legal tools we do have. I did it: I made a will.

Press Release: CDC Launches Full Press To Educate On Dangers of Smoking for HIV+

PRESS RELEASE: July 16, 2014

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Press Contact:
Dr. Scout
(954) 376-2701
CenterLink

CDC Launches Full Press To Educate On Dangers of Smoking for HIV+ 

New CDC Tips Anti-smoking Campaign Focuses on Getting HIV-positive Smokers to Quit

Ft. Lauderdale, FL; July 16, 2014-The CDC’s Tips From Former Smokers Campaign marks a historic partnership between the CDC’s tobacco and HIV divisions to spread the news about the synergistic bad effects of smoking while HIV+.

CDC has been hosting national webinars with all of their tobacco grantees, all of their HIV grantees, and directly with HIV community based organizations to highlight the new Tips From Former Smokers ad featuring Brian, a gay HIV+ man who suffered a stroke from smoking. On the webinars CDC’s Dr. John T.  Brooks, a medical epidemiologist in their Division of HIV/AIDS Prevention explains how we now understand HIV and smoking both exacerbate each other. “Even when your HIV is well managed, there’s still a level of chronic inflammation. This HIV-related inflammation is a risk for many of the same health problems that smoking causes. When a person has HIV and smokes, emerging data suggest there is a combined negative effect.” According to Dr. Brooks “If a person’s HIV is under control, the risk of smoking remains and becomes a greater and often leading preventable risk for illness and death.” In 2009, an estimated 42% of HIV+ individuals smoked, compared with 20% of the general population. CDC has also partnered with the American Academy of HIV Medicine to promote the new ad. The Academy will be running a series of articles on the campaign and offering special posters promoting the ad to their membership. Dr. Tim McAfee, the head of CDC’s Office of Smoking and Health, stated “We’re especially concerned with how people with HIV overlap with the LGBT communities, another population we know smokes at much higher rates than the general public.”

Dr. Scout, the Director of CenterLink’s Network for LGBT Health Equity, is especially pleased with the media investment accompanying the ad campaign. “Three years ago CDC’s Tips From Former Smokers Campaign created one little rainbow ad. Last year they created a print ad featuring two lesbians. This year we see them not only creating this new ad featuring an HIV+ gay man, but also buying placement for it in dozens of LGBT specific regional and national media outlets.”

The new Tips campaign features Brian, a gay HIV-positive spokesperson who suffered a stroke as a result of complications from having HIV and smoking. You can see Brian’s tips videoHERE. In the video Brian talks about his experience rebounding from advanced HIV infection, how despite successfully controlling his HIV he continued to be a smoker, and how he went on to develop  a stroke that required surgery on an artery in his neck. “It took a stroke for me to actually stop smoking,” said Brian, “smoking is something that you do have control over. You can stop. And it’s worth your life to stop smoking.” The video educates people that smoking with HIV increases the risk of certain cancers, heart disease, and stroke. Additionally, information on the CDC’s Tips website states that HIV-positive smokers are more likely to develop HIV-related infections than a nonsmoker with HIV; including thrush and Pneumocystis pneumonia, a dangerous lung infection. The print ads will run for the next seven weeks as part of the larger Tips From Former Smokers campaign. Digital versions of the ad in English and Spanish as well as social media buttons featuring Brian are downloadable from the CDC website.

Dr. Brooks noted that there appear to be no major drug interactions between medications for HIV and smoking cessation that would limit using cessation medications in most HIV-infected smokers. The ads urge smokers to talk to their doctors or call 1-800-QUITNOW for more information on how to quit. The Network for LGBT Health Equity has been working with quitlines to ensure staff serving many of the states in the country are trained in LGBT cultural competency. “Again, that’s all through CDC funding,” says Dr. Scout. “Many people in my communities don’t trust that they will be welcome when they call quitlines, but CDC is making a demonstrated effort on many fronts to eliminate our smoking disparity.”

Concludes Dr. Scout: “These new Tips ads speak to vitally important information that HIV-positive tobacco smokers need to hear; that once your HIV is under control, the next greatest threat to your health has a cure.”

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About CenterLink: The Community of LGBT Centers

CenterLink was founded in 1994 as a member-based coalition to support the development of strong, sustainable LGBT community centers. Serving over 200 LGBT community centers across the country in 46 states. Puerto Rico and the District of Columbia, as well as centers in Canada, Mexico, China, Cameroon and Australia, the organization plays an important role in supporting the growth of LGBT centers and addressing the challenges they face, by helping them to improve their organizational and service delivery capacity and increase access to public resources. (http://www.lgbtcenters.org)

About CenterLink’s Network for LGBT Health Equity

The Network for LGBT Health Equity is a community-driven network of advocates and professionals looking to enhance LGBT health by eliminating tobacco use, and reducing cancer risk through enhancing diet and exercise. The Network, one of eight CDC-funded tobacco and cancer disparity networks, directly trains state health departments and other policymakers in LGBT cultural competency and forges bridges between those agencies and local LGBT health specialists. The Network also actively monitors national and state health policymakers and urges community action when there is an opportunity to enhance LGBT wellness. (http://blog.lgbthealthequity.org/)

Blogging scholarship announcement- LGBTI Health Research Conference, Aug.7-9 2014

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 BLOGGING SCHOLARSHIP ANNOUNCEMENT- LGBTI Health Research Conference 2014
Cleveland, Ohio
August 7th- 9th, 2014
 
APPLICATIONS DUE BY:
Wednesday, July 16th, 2014 at 5pm EST
 

The Network for LGBT Health Equity is looking to send three LGBT health researchers or students to participate in, and blog about, The National Lesbian, Gay, Bisexual, Transgender, and Intersex Health Research Conference Thursday, August 7, 2014 at 5:00 PM - Saturday, August 9, 2014 at 1:00 PM (EDT) in Cleveland, OH.

 

The Center for Health Disparities Research and Education (CHDRE) at Baldwin Wallace University is hosting a National Lesbian, Gay, Bisexual, Transgender, and Intersex (LGBTI) Health Research Conference in conjunction with Cleveland State University, and MetroHealth Medical Center Aug 7-9 prior to the Cleveland+Akron Gay Games.

The conference will be able to provide students, researchers, and community members with opportunities to learn more about LGBTI health research, to network with existing researchers, and learn of opportunities for training in LGBTI health research.

Speakers from the Center for American Progress, Center of Excellence for Transgender Health, Columbia University, Fenway Institute, Indiana University, University of Pittsburgh, University of Minnesota, Williams Institute, UCLA, and representatives from Latin America and India among others will discuss strategies to reduce LGBTI health disparities.

Senior staff members from the National Institutes of Health (NIH) will discuss the current activities of the NIH LGBTI Research Coordinating Committee and the resources available at NIH to help students, early career researchers, and other interested researchers to develop their careers and funding support for LGBTI health research.

If you are selected to attend the conference you will be asked write a minimum of four posts for the Network blog, use social media to disseminate the posts and your experience at the conference, create video footage that can be uploaded to our social networking sites, and to overall assist us in documenting the conference (and of course, have an amazing time!).

Please note: The scholarship will include travel to/from the conference (including travel to/from Cleveland airport), hotel for the nights of Aug. 7 & 8, and a per diem.

APPLICATION DETAILS:

Applications are due by Wednesday, July 16th, 2014 by 5pm EST

Applications will only be accepted by email at healthequity@lgbtcenters.org

Please ensure the subject line reads: Health Research Conference Scholarship

To apply, please email BRIEF responses to the following questions:

1) Briefly describe why you want to go, and what you are hoping to get out of the conference.

2) Briefly describe your involvement and interest in LGBT tobacco and cancer.

3) Please let us know whether you are comfortable posting a minimum of 4 blog entries while at the conference, representing the Network and have your own computer (or other device) with wireless connection.

4) Include where you would be coming from?

Applications will be reviewed and decisions will be made no later than Friday, July 19th. If you have any questions please contact daniella@lgbtcenters.org

 

New Tips From Former Smokers Ad Features Effects of Tobacco & HIV

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     Felecia King

    Project Specialist

   The Network for LGBT Health Equity

 
 

This week, the CDC launched the next phase of the Tips From Former Smokers Campaign, and this time they are tackling the issue of tobacco and HIV. The ad features Brian, who smoked for 30 years, and suffered a stroke as a complication of his HIV and tobacco use. (read more about Brian’s story HERE)

Smoking is especially harmful to people who are living with HIV. For example, smokers with HIV:

  • Are at higher risk than non-smokers with HIV of developing lung cancer, head and neck cancers, cervical and anal cancers, and other cancers;
  • Are more likely than non-smokers with HIV to develop bacterial pneumonia, Pneumocystis jiroveci pneumonia (PCP), COPD, and heart disease;
  • Are more likely than non-smokers with HIV to develop two conditions that affect the mouth: oral candidiasis (thrush) and oral hairy leukoplakia; and
  • Have a poorer response to antiretroviral therapy.
  • People with HIV who smoke are also less likely to keep to their HIV treatment plan and have a greater likelihood of developing an AIDS-defining condition and dying earlier than non-smokers with HIV.

(the above examples are from Aids.gov <– Click the link for more info!)

For these reasons, smoking is a significant health issue for all individuals, but it is even more of a concern for people living with HIV, who tend to smoke more than the general population. According to the U.S. Centers for Disease Control and Prevention (CDC), approximately 19% of adults in the United States are smokers. However, the smoking rate is two to three times higher among adults who are HIV-positive.

 

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Missouri Case Study 8 – Maximizing Our Missouri Hospital Outreach

Andrew Shaughnessy, Manager of Public Policy for PROMO
Andrew Shaughnessy
Manager of Public Policy, PROMO Missouri

Building off of the successful strategy in sparking Missouri hospitals into reviewing their LGBT welcoming policies, Missouri LGBT health advocates knew the potential we had to maximize our engagement with area hospitals. In this installment of the Missouri Case study, we will provide health advocates a few tips that helped us to maximize our engagement with our target hospitals.

Before beginning my work in public policy, I spent several years working on individual campaigns as field staff, and for three years as PROMO Missouri’s Senior Field Organizer. Bare with me as I put my organizer cap back on. As an organizer, you learn fairly quickly how to engage, communicate, and work effectively with several different types of community members. You help to educate and provide community members with the tools they need to be champions for a cause. The same rules apply when it comes to policy outreach. Here are a few of my organizing tips that will help you maximize engagement:

Tip # 1 – Follow-Up is Key

After mailing the second letter, we waited roughly two weeks before we attempted to make contact with our targets. We followed up with two phone calls within a two week span to Assistants of the Senior-level officials, making sure to leave voice mails.

Tip # 2 – Build Relationships with Assistants

Why should you follow-up and build relationships with Assistants? For many reasons, but 2 reasons will suffice:

  1. You want to know if the Senior official had received the review letters, correct? Most of their mail would be combed by their Assistant, who would likely be able to confirm this.
  2. Assistants should be seen as the gatekeeper. In order for you to schedule meetings with, and even sometimes talk with your official, you will need to go through their Assistant. The more they get to know you the comfortable they will be giving you access.

Following these simple tips will help you maximize your engagement with hospitals. From the beginning of our first outreach letter to this point took us roughly 60 days to complete. After finishing our follow-ups, we walked away having engaged 70% of our list in some way. 35% had confirmed that they were reviewing their current LGBT policies, and 25% confirmed they were actively trying to change their LGBT policies. In the next installment of the Missouri Case Study, we will discuss the nature of our conversations with Senior officials and tips for communicating effectively with them.

 

June 2014 Updates from the Health Equity and Cancer Networks

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June 2014 Update

June was full of huge wins for the Network! The month was kicked off with the release of the results from CenterLink’s 2014 LGBT Community Center Survey Report. The survey, which we worked with CenterLink and MAP to add specific questions around health-programming, was a huge success at providing us with needed data and ideas around the existing policies, and desired programs, of LGBT Community Centers.

Next, Scout was invited to NIH to kick off their year of trans awareness activities. Scout and a new Network guest blogger then headed to Philly to attend The National Trans Health Conference, which is the largest of its kind. We’re hoping to inject even more wellness programming into that conference next year. Scout then took a short detour to Pittsburgh to help with a book on LGBT research and turned in a chapter on LGBT cancer policy for a forthcoming book, then headed to Colorado where he conducted nine consecutive cultural competency trainings for the National Jewish Quitline. This training partnership, spurred by Michigan Department of Health, was only the beginning of more work we’re going to do with that quitline. Read more about the trainings HERE.

Our Needs Assessment continued to pick up steam during June, resulting in 687 completed surveys from the Michigan Centers by the end of the month. Network staff and the Fenway Evaluators held weekly check-in calls with the Centers and closely monitored incoming data to ensure accurate demographic representation. Additionally, the Pride Center of Vermont (formerly RU12) is currently working on their outreach plan, and will be launching the Needs Assessment in late July.

At the end of June, CDC and the Office of the Surgeon General released a video in honor of the 50th anniversary of the Surgeon General Report and Pride Month, featuring Scout discussing tobacco in LGBT communities. Read our press release about the video HERE!

 

LGBT-Cancer-Network

June 2014 Update

1) Held a Take Care of That Body Webinar on June 4th

2) Followed up with Webinar attendees and calling Centers (identified with help from Denise) to promote uptake of TCTB programming

3) Working with TCTB materials for centers (paper materials, prescripted text for email, website, social media, etc)

4) Preparing for webinar on LGBT Cancer Survivor Forums

5) Conference Call meetings with Francisco Buchting (consultant) for continuing the Best Practices document processes

6) Conference calls to discuss and final due date for submissions of section for the Summit Action Plan

7) Consulting (TA) with Myron B. Thompson School of Social Work, University of Hawai‘i-Mānoa, on developing an anal cancer and health program

8) consulting with Susan G. Komen on a plan to provide cultural competence training to their own staff and local cancer screening facility staff.