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Seth Travels to D.C. with Jill Zarin

by Seth Ginsberg — last modified Nov 09, 2009 11:48 AM

Our dynamic duo address the "United Nations" for arthritis.

bone_joint_decade01.jpgIt has been an action-packed past few weeks.  Just last week I had the opportunity to accompany everyone's favorite Real Housewife, Jill Zarin, to the U.S. Bone and Joint Decade conference in Washington, D.C.  Jill was the closing luncheon's keynote speaker.  She talked about being the mom of a daughter with arthritis, as well as having a stepson battling Still's disease.

It was great to watch her relate to everyone and have a very meaningful conversation about raising the profile of arthritis among the general population.  Even though I wrote a few notes ahead of time for her to reference, she didn't look at her notes once -- she didn't need to.  Instead, she spoke from the heart about arthritis in her household.

Addressing an audience of about 300 people from 60 countries around the world humbled me quite a bit, and re-emphasized the global nature of arthritis and bone disease.

I had the chance to introduce her and say a few words up front about CreakyJoints and our opinion of what advocacy should mean.  Addressing an audience of about 300 people from 60 countries around the world humbled me quite a bit, and re-emphasized the global nature of arthritis and bone disease.  It was kind of like the United Nations for arthritis -- there were doctors and advocates from all around the world, including every continent -- coming together with a singular mission.

bone_joint_decade.gifEven though the Bone and Joint Decade -- originally created as a 10-year push to raise awareness about, pool resources for, and elevate the profile of arthritis -- is nearly completed, the future is bright for all of us living with these conditions.

 

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Catching Up with an Old Friend (Knock-on-Wood)

by Seth Ginsberg — last modified Oct 05, 2009 08:00 PM

Seth rides the wave ... of good times.

Feeling great didn't deter him one bit from charging ahead and searching for answers and the pursuit of feeling even better -- and I think that's what impressed me so much.

This weekend I caught up with a friend who happens to have moderate-to-pretty-bad anklyosing spondylitis.  I've known him for a while (he's actually the father of some friends), and I've seen his ups and downs over the years -- trying new meds, desperately clinging to old meds, searching every which way for answers.  And some days have been better than others.

This weekend he was doing great, and we chatted over light snacks and club soda (what one does at such gatherings) about how well he was feeling.  I must have knocked-on-wood a dozen times (I'm That Guy), but was really happy to hear that things were going well.

Feeling great didn't deter him one bit from charging ahead and searching for answers and the pursuit of feeling even better -- and I think that's what impressed me so much.

Needless to say, he is on a roll and I wish him well.  I told him to go celebrate.

 

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Seth Talks About Two Types of Volunteering

by Seth Ginsberg — last modified Sep 22, 2009 05:47 AM

There's the "good" kind of volunteering, and the "other" kind ...

I go to her house and we talk about life and she tells me stories from "the old days" -- which are extremely entertaining.  She knows she's a pistol, and has impeccable timing when she delivers a joke or tells a funny story.

There are two types of volunteering:  the kind that helps make the world a better place ... and the kind in which you tell the gate agent you'll accept a travel voucher in exchange for giving up a seat on an overbooked flight.

While both leave you feeling incredibly good -- especially when your travel plans are flexible and you were smart enough not to check any luggage -- the former (helping the world) has a lasting effect on your mind, body, and spirit.

I found a new kind of volunteering lately, one that's my speed and incorporates one of my favorite things in the world:  laughter.  Like the old saying -- "If you like your job, you never work a day in your life" -- the best kind of volunteering doesn't feel like work and is something I have enjoyed doing:  spending time with a senior citizen on weekend afternoons.

I go to her house and we talk about life and she tells me stories from "the old days" -- which are extremely entertaining.  She knows she's a pistol, and has impeccable timing when she delivers a joke or tells a funny story.  It's what I love about spending time with her -- I always leave happier than when I got there.  And I know she does, too.

Everyone should volunteer.  The world would be a better place if people gave back with their time or their skills.  While past volunteering has taken me to the side of the FDR Drive in midtown Manhattan to clean up garbage (prisoner style!) or in to children's wings of hospitals to juggle -- hanging out with Ruth and making one another laugh is just as much a good deed.  A good deed at my own speed.

 

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Taming the Purple Elephant in the Room

by Seth Ginsberg — last modified Aug 12, 2009 08:31 AM

Seth talks health care.

How can anyone afford to ignore what's going on?

Most people opt out of politics unless there's a juicy scandal involving an intern, a bag of money in the freezer, or an escort.  Which really grinds my gears, because when a subject like health care comes up, we all need to pay attention.  The old saying goes "if you don't have your health ..." -- so I ask myself, how could anyone afford to ignore what's going on?

Here's the problem:  it affects all of us (especially those with arthritis) because we're the ones living with a chronic condition who rely on good health care to live a decent life.

If you've ever gotten a referral, been prescribed multiple medications, needed a test (like an MRI) or even a second opinion, you've likely had difficulty navigating the complicated mess of approval, authorization, and reimbursement that is health insurance benefits.

It's hard not to get angry at the thought of an insurance company denying a claim.  I remember way back when I was prescribed a Prilosec (proton pump inhibitor) to keep the other medicine I was taking from causing an ulcer.  That one little pill (back then it was prescription-only) was so annoying to get approvals for, it must have taken a dozen phone calls a month between the doctor's office, pharmacy, insurance company and my mom.  And why?  Because an MBA graduate at the health insurance company made a formula that kicked back costly drugs because there were other alternatives available.

Even then I never understood how an insurance company could challenge a doctor's decision to prescribe a certain medicine.  Why even separate the two?  If we're going to get screwed by the insurance company, why not take out the middleman and have Blue Cross open clinics for their doctors to tell us up front that the medicine or tests we need aren't covered, so we won't even bother.

Whichever "side" or whatever opinion one might have about the health care conversation, it's best to at least get involved and know more.  And know more doesn't mean learn everything from Fox News or even MSNBC.  It comes down to learning and thinking about some of the complexities that comprise the issue.  Boiling down health care into small sound bites or news stories (like disruptive town hall meetings) doesn't scratch the surface.

And it doesn't do us any good if we're going to actually get hooked up and stop being jerked around.

 

 

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Put Me In, Coach!

by Seth Ginsberg — last modified Jun 16, 2009 04:46 PM

Seth joins a softball team. Of senior citizens.

Words aren't adequate to describe the level of soreness that I still feel, an entire week later.  I tore things, shifted things, ripped things, dislocated things.  It was a mess.

This past week was either the end of an era or the beginning of a new one, depending on your point of view.  I joined a softball team.  But not your everyday-after-work softball team -- I joined a club team comprised of "active" men and women in their 40s, 50s and, yes, 60s.

Finally, a team game I can play in, feel good about, and look like a young all-star.

It's like the old saying, "If you want to look thin, hang out with large people."  Well, if you want to feel good with arthritis, play softball with people 45 years older than you.

The problem became pretty apparent, however, that after being sidelined for all of these years, I totally over-did it.  Words aren't adequate to describe the level of soreness that I still feel, an entire week later.  I tore things, shifted things, ripped things, dislocated things.  It was a mess.  The 63-year-old third baseman made me feel like a moron -- he said, "You better stretch kiddo," and I said, "I did, I did."

Well, I didn't.  And I'm feeling it today.  Pretty annoying.  But, despite the pain, it felt great to be out there.  Kind of corny, of course, but I'm still looking forward to our next game.

And, for the record, we lost 15-1.

 

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Seth Ginsberg

Location: New York, NY
Seth Ginsberg
Just a boy with arthritis who was tired of feeling alone out there -- in a world full of great people in similar situations.
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Seth Ginsberg

Location: New York, NY
Seth Ginsberg
Just a boy with arthritis who was tired of feeling alone out there -- in a world full of great people in similar situations.