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Articles tagged with: My Fabulous Disease

Oct24

Playing the Last Scene of a Marriage

Monday, 24 October 2011 Written by // Mark S. King - My Fabulous Disease Categories // Gay Men, Living with HIV, Mark S. King

Mark S. King hears the words no one wants to hear “I’m not in love with you anymore.”

Playing the Last Scene of a Marriage

He said this at the dinner table as he made the first cut of his steak, a beautiful ribeye he had grilled to perfection. I put down my own knife and fork and stared at him.

“This isn’t new, or else you haven’t been listening,” he said, a bit wary of my gaze. “You knew I wasn’t happy a year ago. And we’ve just ignored it.” He took a bite and I hated him for it, for having the digestion for this.

I had dropped the butter, that’s how this started. I had been setting the table and I dropped the butter and it made a mess and the dogs were licking it up and he got mad. But it was an accident so I got mad too because he always seemed angry and I told him so and then I provided a litany of complaints about his moodiness and then he sat down to start eating his steak and

“Mark?”

and if I hadn’t dropped the butter we wouldn’t be having this conversation and I could keep pretending we were still in love with one another.

“Mark. I care about you. You know that. But this isn’t working.”

Twice, I wanted to say. Twice this hasn’t worked. In our nine years together, we had tried this twice. The first breakup was the result of my disastrous drug abuse. During our first four years together, I became an increasingly deceitful, outrageous mess. When at long last my pitiful lies were exposed and I checked myself into a drug treatment program, he ended it.

That time, that was the bang. This steak and baked potato dinner was the whimper.

I could feel the emotion swelling inside me and didn’t feel like being the first to cry, so I left the table for the bedroom. As I began heaving deep, guttural sobs I realized I was watching myself, from a distance, like a performance. I saw the way I held my body, arms wrapped tightly in a hug, knees bent from the force of the sobs. What’s my motivation? I found myself wondering, still in the midst of it. Why am I crying? How do I really feel about this?

No sooner had I asked myself these questions, tears streaming, that I posed another. And it was far more manipulative.

How should I play this, exactly?

There were so many options. The shocked and devoted lover. The vindictive injured party. The delicate, recovering addict, shaken to the core by the breakup.

I indulged in this sick game of posturing for only a moment, but it was long enough for me to spot my disease on display. It was my drug addict mindset, always looking for an angle, always trying to deflect blame or skirt responsibility or come out ahead. Despite three years of sobriety, that mindset still enjoys hijacking my emotions.

Mark, I muttered, my face wet with tears, stop it. You crazy fuck.

After the first breakup, he and I didn’t talk much. I moved back to Atlanta and, after some false starts, I finally got a foothold on my recovery. Life opened up again. I created My Fabulous Disease. I rediscovered my joy.

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We began speaking tentatively to one another, then more often, and as I approached my first year of sobriety we finally admitted we still loved each other. It was such an unexpected turn of events, and so achingly romantic, that we both followed our hearts completely. I returned to Florida and we resumed our life together, minus my drug use and the dramatic sideshow that went with it.

And yet. And yet.

Within a year, we knew. We tried counseling, which only reopened old wounds and created new resentments. Something unspoken told us to stop the sessions, to not reach the finish line with so much misplaced anger. Instead, we coasted silently for another year, and we looked away.

The postscript had been written, like a paper holding an obituary for a movie star that will probably die soon. They’re just waiting to print it.

And now, despite my philosophical approach to this, my faith in my sobriety and my gratitude for my friends, I have moments when I am crushed with fear. Being alone. Starting over. Dating. And then there’s the HIV.

HIV likes giving a certain zing to relationships. It makes starting one rather tricky, what with the disclosure and the sexual negotiations and the vague fearfulness on either side. It loves ending them as well, but not always in the way you might think.

When HIV treatment drastically improved fifteen years ago, there were people celebrating the world over about their sudden renewed health and vitality. And they often marked the occasion with surprising pronouncements. “I’m going to live another thirty years,” one would muse to the partner across the breakfast table, “and not with you…”

Thankfully, my HIV status had no role in the breakup. But it will surely become an issue as I navigate whatever romantic life awaits me.

I dried my face and walked from the bedroom to face him again. I knew what was true, and I held on to it tightly, unwilling to play this scene for effect or advantage. And I finally grasped what an amazing, unlikely gift had been offered to me.

We should have broken up like this the first time, I realized. It should have been this way, and now it can be.

This time, I can do this gracefully.

He was sitting at the sofa and looked up to me, sadly, hopefully, and I sat down across from him. There was a moment of mutual assessment, and we saw the truce in each other’s eyes. Some of the stress melted.

And we began to talk.

This article first appeared in Mark S. King’s own website My Fabulous Disease http://marksking.com/.

Oct06

Patients take the lead: the internet - and blogging - are changing the way people learn about health.

Thursday, 06 October 2011 Written by // Mark S. King - My Fabulous Disease Categories // Social Media, Health, Mark S. King

Mark S King and the social media revolution where patients seek info, help and support online and we hear from bloggers/advocates at the forefront of this paradigm shift in health care delivery.

Patients take the lead: the internet  - and blogging - are changing the way people learn about health.

You’re part of a healthcare revolution in cyberspace, my friends. It’s changing the way people find treatment information, relate to their doctor, and support one another. And you’re about to meet some of the marvellous people who are leading the charge.

Did you know that 80% of internet users spend time gathering health information  That makes it the third most popular online pursuit, following only e-mail and using a search engine (and yes, that means more than porn. Is your mind officially blown?) The ramifications are enormous for patient empowerment – and for the companies who want to reach us as consumers.

In this new video episode of My Fabulous Disease, I attend e-Patient Connections 2011,  a conference devoted to showing healthcare how to reach patients online. You may remember from my previous video blog “Should AIDS Activists and Pharma Just Get Along?” that my relationship with Big Pharma is a complicated one, so this new episode sidesteps most of the e-Patient Conference program and focuses instead on something truly remarkable.

I participated in a gathering of twenty bloggers the day before the conference, all of us living with chronic disease and writing about our experience (watch the episode, and prepare to be inspired).

The meeting, co-sponsored by HealthCentral and Klick Pharma, was a revelation. Never have I had the privilege of meeting so many online advocates living with other health conditions – cancer, diabetes, rheumatoid arthritis, multiple sclerosis, lupus, and more – and hearing about their lives and challenges.

In a day-long session moderated by Digital Health Coalition, the group began drafting a set of values – sort of a digital health consumer Bill of Rights. It’s a work in progress (organizers promise follow up sessions to continue the process) that seeks to define and protect us as “e-patients,” such as transparency when it comes to online messages from pharma, or asking that our physicians get savvy enough to email lab results if we want.

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As much as I tend to view HIV/AIDS as “terminally unique,” there’s something comforting about how much I had in common with the other bloggers. Yes, it did occur to me that I was the only person in the room with a condition that could get me arrested for having sex, for instance, but this wasn’t the time or forum to announce our differences. What we shared, and what they taught me about being a more effective advocate, was considerable.

I’ll let my new friends speak for themselves in the video. Meanwhile, check out their sites, especially if you might be living with one of the conditions they are blogging about. My fellow workshop participants were Eileen Bailey (ADHD) Ann Bartlett (Diabetes), Phil Baumann (Men’s Health), Robert Breining (HIV/AIDS), Donna Cryer (Ulcerative Colitis) , Dave deBronkart (Cancer), Bennett Dunlap (Diabetes), Lisa Emrich (MS and Rheumatoid Arthritis), Amy Gurowitz (Multiple Sclerosis) , PJ Hamel (Breast Cancer, Osteoporosis), Tiffany Peterson (Lupus) , Jenny Pettit (Sjogren’s Syndrome, Fibromyalgia), Teri Robert (Migraine), Casey Quinlan (Cancer), Rudy Sims (Disability), Michael Weiss (Chron’s Disease), and Kelly Young (Rheumatoid Arthitis) .

Finally, those who use the internet (and are discerning about what they find) are far more likely to bring ideas to their care provider, or understand side effects or otherwise take an active role in their care. So keep it up, fellow e-patients!

To paraphrase a golden oldie, the healthcare revolution will be televised… on Youtube and Skype and TheBody and Wego Health and HealthCentral and even right here, on My Fabulous Disease.

Please be well, and as always, you’re welcome to use the “share” feature below to enlighten your friends and colleagues. ;]

Mark

This an abridged version of a blog entry first appearing in Mark S. King’s fabulous blog, My Fabulous Disease. Read it here.  

Sep20

GIPA in Action: How the Denver Principles changed AIDS (and health care) forever.

Tuesday, 20 September 2011 Written by // Mark S. King - My Fabulous Disease Categories // Conferences, Health, Mark S. King

Mark S. King with an important review of how GIPA (the Greater Involvement of People Living with HIV/AIDS) - which movement we often despair over – has actually made great strides since its kick-off with the Denver Principles in 1983

GIPA in Action: How the Denver Principles changed AIDS (and health care) forever.

You must know this, because it matters. Because it has already changed your life and you may not even realize it.

It was 1983. Just a year prior, Acquired Immune Deficiency Syndrome (AIDS) became the fearful nameplate for the murderer of gay friends and lovers. The virus that caused it, HIV, had only been identified a few months earlier.

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Amidst this atmosphere of unremitting grief and fear, a group of activists met in Denver as part of a gay and lesbian health conference. Among them, a dozen men with AIDS. (And among their number, the inspirational Michael Callen of New York City, pictured at right, and Bobbi Campbell of San Francisco.) They were about to do something that would change our response to AIDS — and health care in general — forever.

As the conference drew to a close, the activists asked to address the attendees. Rather than having a report presented about the state of the AIDS crisis, they wanted to speak for themselves. If the word “empowerment” hadn’t yet been a part of the health care lexicon, it was about to be.

The group took turns reading a document to the conference they had just created themselves, during hours sitting in a hospitality suite of the hotel. It was their Bill of Rights and Declaration of Independence rolled into one. It would be known as The Denver Principles, and it began like this: “We condemn attempts to label us as ‘victims,’ which implies defeat, and we are only occasionally ‘patients,’ which implies passivity, helplessness, and dependence upon the care of others. We are ‘people with AIDS.’”

The seminal moment in AIDS activism was arguably those few minutes, when the principles were outlined by these brave “people with AIDS.” Identifying themselves as such, that alone, was startling at the time. How could they not be seen as anything but victims of an arbitrary and cruel killer? But they would have none of it. And they did not stop there.

They outlined 17 principles that covered everything from health care decisions to civil rights to sexual conduct. And their impact on all of us is so obvious today it can easily be taken for granted. Please honor their service and read on.

They demanded that physicians see their patients as “whole people,” and provide “accurate information.” They believed their opinion on their care should be awarded equal weight, and this was revolutionary. The next time your doctor consults you about a change of medications or whether a diagnostic test may be required, you can thank The Denver Principles.

They asked “all people” to fight against AIDS discrimination in the workplace and in housing, which was a provocative concept in the fearsome days of 1983 when people recoiled from those with HIV.

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Astonishingly, they even advocated for “as full and satisfying sexual and emotional lives as anyone else” for people with AIDS. Imagine that, at a time when a new blood- and sexual contact-driven disease was in full bloom, a group of people suffering from it wanted sexual rights. Amazing. And yet today, if you are HIV positive and disclose your status to potential partners without feeling like a diseased pariah (or you have observed sexual evolution, like serosorting and sex clubs for positives), you can thank The Denver Principles. For that matter, if you’re HIV negative and negotiate sex with partners of any stripe, you can thank the Principles for believing that we all deserve a satisfying sexual life.

While gay men were the designers of the document, The Subversive Librarian notes that this was a situation in which lesbians and gay men worked together really effectively. As Walt Senterfitt wrote in 1998: “Part of the widespread acceptance of the notion of self-empowerment must be attributed to lessons learned from the feminist and civil rights struggles. Many of the earliest and most vocal supporters of the right to self-empowerment were the lesbians and feminists among the AIDS Network attendees.”

A clear line can be drawn between how all of us participate in our own health care decisions and The Denver Principles. It has influenced the doctor/patient relationship in every disease category, benefiting millions of patients.

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Longtime activist and POZ Magazine founder Sean Strub delivered the keynote speech at the Campaign to End AIDS’ 5th Anniversary event last year. He devoted his powerful remarks to the historic importance of The Denver Principles and announced a plan to create a Denver Principles Empowerment Index that will hold AIDS groups accountable to the people they serve. That work continues today, with a planned meeting of activists underway to map the criteria of the Index.

Sean knows a thing or two about accountability. When I worked for various AIDS organizations through the 1980’s and 90’s, we were shaking in our boots each year when POZ Magazine produced their chart outlining which of the country’s AIDS organizations met certain criteria. The chart rated things like financial transparency, the cost of fund raising, and how many HIV positive people served on the Board (for which, by the way, you can thank The Denver Principles, which demanded people with AIDS “be included in all AIDS forums.”)

The Empowerment Index that Sean and others are creating (he’s open to input) would chart similar criteria for AIDS organizations and other health care providers, by measuring the degree to which their clients feel empowered and involved in their own decisions. It would tangibly rate things like fund raising, transparency, HIV+ representation and the delivery of services.

So the Denver Principles live on. A list of profound basic rights were outlined during the dawn of this epidemic that continue to have an impact on us today. Anyone facing a chronic illness should laud the amazing journey and profound importance of this document.

(When I was invited to participate in an “e-Patient Bill of Rights Roundtable” at a conference for internet-based health bloggers and web sites next week, The Denver Principles immediately sprang to mind. So why not revisit this part of our history as people living HIV/AIDS and their advocates? This is a revised version of my posting from May 4, 2010. — Mark)

This post originally appeared on Mark S. King's regular home My Fabulous Disease, which, if you're not familar with it,  you should cherck out here.

Aug14

Facebook Put My Life Together Again

Sunday, 14 August 2011 Written by // Mark S. King - My Fabulous Disease Categories // Social Media, Mark S. King

Mark S King says: “Facebook has allowed me to tell the truth again. It has shown me how to be authentic and the same person to everyone in the various corners of my life.”

Facebook Put My Life Together Again

Today I accepted the Facebook friend request of someone I knew in high school. We haven’t spoken in more than thirty years. She is married with a load of kids, and God knows why she wants to befriend the scandalous queer who wore knee-high platform boots to the junior dance in our home town of Bossier City, Louisiana.

I did what I always do. I accepted her request and included a link to My Fabulous Disease, labeled as a blog chronicling my life “as an HIV positive gay man in recovery from drug addiction.” Based on past experience, I’m unlikely to hear from her again, and that’s okay.

For most of my life, I’ve kept my social circles far away from one another. The family section never mixed with the gay contingent. These segments were then dissected into those who knew my HIV status and those who did not, which were then divided by whether or not they knew I did comedy drag, and then finally separated into those who knew I did (a lot of) drugs, and those who did not.

When I finally put a stop to my exhausting existence of lies and fakery that accompanied my drug addiction, I knew that in order to live a life of integrity I would need to be the same Mark for every person in my life. No more masks or crafting my personality to suit the audience.

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Then I joined Facebook, which allowed me to invite all of these segments into one pool of friendship. My nephew would see my posting about my HIV treatments. My AIDS work colleagues would be treated to videos of me in drag. My friends in recovery would post encouraging words about our shared disease of addiction, and all of this would happily exist on my profile page alongside my nephew’s picture of his baby boy.

Facebook has allowed me to tell the truth again. It has shown me how to be authentic and the same person to everyone in the various corners of my life. Becoming a whole person again cannot be understated. After many years of deceit and hiding out from one group or another, Facebook presented an exercise in transparency that has saved me from the counterfeit personas I relied upon for most of my adult life.

With all the excitement and hype about Google+, I know it’s a format I will never embrace, because it promotes a feature that allows you to separate the people in your life into “circles.” They trumpet this as a real innovation, but it would be a huge step back in my personal development.

I need all the positive structure I can get. Overcoming my addictive nature is still a work in progress, and sometimes my insecurities can still find their way into my Facebook life.

I scan every posted update from hundreds of friends, “liking” with consistent generosity. Anyone who wants to be my friend makes the cut, except for the Eastern bloc hoochie mammas that sometimes come calling. Do they knock on your Facebook door, too? They show far too much boob in their photo and love older men and “hanging out.”

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Men on Facebook who show too much boob, well, they mostly get a pass. But beware of those who are always shirtless, and their friends are always shirtless, and so on. We’re not talking “at the beach” pictures, but holding-the-iPhone-aloft-in-front-of-the-bathroom-mirror type pictures. If you can’t ask a friend to take a shirtless picture of you, I figure you must be up to no good.

My OCD still sneaks out, and it adores Facebook. Someone might post a picture and I look at it and then I start browsing their other pictures and one of them has some interesting guy I don’t know and so I click on his profile and check out his pictures and stare at his many friends whom I do not know and carefully scan their photo album of a very nice dinner at a restaurant I have never heard of in a city I’ve never visited, and then notice some fabulous pictures of a birthday party for an adorable complete stranger and decide to look at the pictures of each and every birthday party guest and then I look up and it’s one o’clock in the fucking morning.

These behaviors are sometimes slow to change. I’m working on it. In the meantime, you can always friend me. What you see is exactly who I am.

 This article first appeared in Mark S King’s regular blog My Fabulous Disease .

Jun04

Heroes Week: Can I blame gay culture for my drug addiction, please?

Saturday, 04 June 2011 Written by // Mark S. King - My Fabulous Disease Categories // Gay Men, Mental Health, Health, Mark S. King

Mark S King: after a lifetime of sporadic, recreational drug use, I became a full-blown crystal meth addict ten years ago, and then eventually got clean and sober in January of 2009. But why would I, or anyone as engaged in life as I was . .

Heroes Week: Can I blame gay culture for my drug addiction, please?

 . . . . morph in to a drug addict?

It seemed an unlikely turn of events for a gay advocate and outspoken community leader living with HIV. Was my drug addiction some sort of post-traumatic stress from the AIDS horror show of the 1980’s?

Maybe it pre-dated AIDS, and resulted from the stress and shame of growing up gay. It’s easy to understand why anyone who came of age believing they were perverted (and going straight to hell) might need a stiff drink. Research indicates that gay men and lesbians are more likely to smoke, drink and use drugs. Was I born this way, GaGa?

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So I was immediately drawn to the new book, Gay Men and Substance Abuse: A Basic Guide for Addicts and Those Who Care for Them. I thought the book might bolster my hypothesis that I was a victim of gay culture and doomed from the start.

Because, my dear friends, even after more than two years living clean and sober, I still jump at the chance of blaming my behavior on something other than myself.

Alas, the book is a helpful, informative guide but it doesn’t let me off the hook. It hasn’t the least bit of interest in finger pointing. Instead, it offers practical information and advice about addiction, treatment, relapse and recovery – written specifically for gay men and their families. I would strongly recommend it for gay lovers or allies trying to understand the addiction and recovery process, and required reading for those working in the field.

I spoke to author Michael Shelton, M.S., C.A.C., about the ways in which addiction and recovery are different for gay men, and he pointed out the importance of family support, and the fact that gay men often don’t have it.

“The number one precipitant for a person seeking help is family,” Michael told me. “If they have no close relationship with their family or a significant other, there’s no one on their back telling them to get into treatment.”

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But what about gay culture itself? Michael wasn’t ready to make blanket pronouncements about gay culture’s perils, but he did note the connection between our preoccupation with sex and the almost mythical sexual reputation of drugs like crystal meth.

“We absolutely have created sexual monsters” he said. “I see these guys every week (in my practice), and the only way they can engage in sexual contact with another man is through the use of substances.”

Michael does allow that gay media plays a role in this hyper-sexuality. “The norms of our community say that one of the primary goals is hot sex as much as possible. Gay male culture is a hyper sexual culture. Pick up any gay paper and notice the sexual content.”

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Michael was quick to add that “this doesn’t deny the fact there are many long term gay couples,” but that statement didn’t fit my agenda – Gay culture contributed to my addiction! I had something to blame! – so I ignored it and called my gay BFF Charles to announce my findings.

“Charles!” I began. I had caught him at a subway stop waiting to commute home from his governmental public health work. He does the green thing. “It’s no wonder I became a drug addict, Charles.”

“Really? How do you figure that?” he asked.

“Because I’ve been such a totally gay man!” I was lightheaded with blame deflection. “And being gay is all about hyper-sexuality and taking steroids and looking hot and dancing on boxes at circuit parties, just like I did. Oh, and don’t forget sex parties!”

There was silence for a moment. I could hear a garbled announcement on the subway speakers at his end.

“Well, that pretty much negates my life,” Charles finally said, flatly.

Charles has never been fond of drugs. His sex life has been more conservative than mine, meaning, in the realm of sanity, and his party days consisted of dance floor celebrations that ended before last call. He’s never seen the inside of a sex club.

“Oh Charles, I didn’t mean –“

“Your view is so small, Mark. You think when you stopped that behavior and going to those places… did you think you had reached the far limits of gay culture?”

I was properly chastised. “Yeah,” I said. “I felt like that for a while.”

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“Then welcome to the rest of the real world, Mark. Say hello to all the gays who have real lives and real jobs and are standing at subway stops waiting to get home to feed the cat. Is that not gay enough for you, because I’m not stopping at a bathhouse on the way home? I’m going shopping later to find a hippie outfit to wear to a touring production of Hair I’m seeing tonight. I’m thinking love beads or pooka shells. Gay enough? Or should I shoot up meth during intermission?”

“Yes, yes, Charles. You’re plenty gay.”

“Gee, thanks. My train is here. Talk to you later.”

Charles did his usual stellar job of pointing out what should be obvious to me. My self centeredness and limited viewpoint keep getting in the way. There hadn’t been room in that view for other gay men who enjoyed lives without drugs or alcohol, or who were capable of using moderately.

There is a saying among people like me that we are not responsible for our addiction, but we are responsible for our recovery. It suggests that I should not blame myself for how I got in this predicament, and while I’m at it, I probably shouldn’t blame my local gay dance club, either.

My road to recovery as a gay man looks remarkably like the road everyone else must take – paved with equal parts honesty, open-mindedness and a willingness to keep trying. That willingness, no matter how much I try deflecting and blaming others, is entirely up to one person.

That would be me. Big, flaming, gay ‘ol me.

Read more of Mark S King on his own website My Fabulous Disease. http://marksking.com/

Apr25

Six Tips for Choosing your HIV Doctor

Monday, 25 April 2011 Categories // Health, Living with HIV, Mark S. King

We get to meet Mark S King’s doctor, who walks us through what to look for in finding HIV and primary care

Six Tips for Choosing your HIV Doctor

I had to say goodbye to my doctor recently. I was moving out of state, and Dr. David Morris of Pride Medical Group in Atlanta had been nothing but a patient, supportive teacher to me. Over the years he’s seen me through Hepatitis C, a few crystal meth drug relapses and three boyfriends. I love him and what he’s done for me, and I hated the prospect of finding a replacement in Florida.

Fortunately, Dr. Morris agreed to give me some tips to make the process easier, and in this video episode you’ll see me take his advice. From medical records to being honest about my history, you can watch me use his advice during my very first appointment with Dr. Dominic Riganotti in Ft. Lauderdale.

That’s right. Dr. Riganotti allowed me to film our very first meeting, and I appreciate his willingness to educate others through this process. And here’s the biggest lesson: don’t be afraid to ask questions about anything you think is important (several suggestions are provided in the video). It is perfectly customary for potential patients to question the doctor’s qualifications to treat them.

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If there is anyone is our lives for whom nothing is “too much information,” it’s our doctor. As a patient I used to be more hesitant disclosing private issues like my sexual habits or drug abuse history, but I got over it when I realized my doctor wanted to help me, not put me in jail.

If you visit a doctor who doesn’t like the questions or gives you attitude, you can thank the jerk for their time and go find someone else (or request another provider at your HMO or community health center). This relationship is too important not to feel completely confident in his or her abilities.

I hope this video is helpful to you or someone you know. Thanks for watching, and please be well.

Find Mark at his regular home My Fabulous Career http://marksking.com/ for more great stuff.

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