Saturday, January 9, 2016

Is it Gossip or Caring When You Relate Someone’s Health Status?

Whether we like it or not, HIPAA (Health Information Privacy Act) no longer extends to just medical professionals but has invaded every aspect of life including our relationships with one another. For generations, when someone was ill, injured, or in trouble, people would pass this information on at church, Grange, Sunday supper, a quick phone call or another community gathering spot and respond accordingly. Today, discussing someone’s health is pretty much akin to gossip in our uber confidential society.

I was recently reminded of this because of an individual’s behavior that’s putting others at risk. “We’ve done the best we can and have let people know of the situation,” one person noted. However, that isn’t true.  Those who know are very concerned, but for the most part the community is unaware because there is an unwritten rule that health related information not be shared.

So what’s the difference between giving information because you care and gossiping? Should you do it?

Lets be clear, every one gossips. We talk among friends, colleagues, neighbors and family. It can be meaningless, but it’s also a way people bond and most importantly, it’s how we come to understand societal norms and acceptable behaviors. So in essence, there is value in this practice.

What’s not okay is passing along information that you don’t know to be true, and/or which can be very damaging. It is also harmful when you vicariously describe someone’s pain and suffering or gloat over their difficulties. Getting pleasure out of someone’s misfortune isn’t okay and it generally doesn’t bode well in the long run for those who like to “gossip” in this manner.

The arrival of HIPAA brought about a societal shift where it’s no longer okay to talk about health status, including your own to some extent. In fact, people have been sued and lost jobs because of it.

One of the worse examples I recall was when a teacher was dying and the school adopted a “confidentiality” gag order, with students being kept in the dark. Without belaboring it, things did not go well for the students and some of the faculty when the teacher died.

My concern with this approach is that we are fostering secrecy to a level whereby those most in need of support and help aren’t getting it. Further, by needing to keep things “secret” more power is given to disease then it deserves. When this happens, instead of fostering support, caring and compassion, we encourage fear, shame, and guilt. 

Bottom line-unless you are acting in a professional manner under HIPAA, you aren’t governed by it. That said, use discretion and tact about what and to whom you share information.

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Wednesday, January 6, 2016

Take a Break: One a Day Projects in January

Some times it feels like a “jumpstart” is needed when January rolls around. In Vermont, temps are in the minus readings and hibernation can lead to “cabin fever,” which is less than desirable. Last year’s Fun a Day project was a good boost to get the New Year off, so this year it’s One a Day projects.

My theme is making something every day with recycled aluminum cans (beer and soda cans). Since the Christmas tree is still up, reflectors for the lights on the tree have become an obsession. Some I like, some not so much, but I’m finding that my first thoughts of the morning are about a new approach to creating the reflectors, which is an improvement over worrying about something I have no control over any way.

While many communities have One a Day or Fun A Day shows, you can easily share your projects on social media to help inspire yourself and others. Also, don’t feel you need to limit them to something artistic. There are just two simple rules
• It’s enjoyable (fun)
• It’s something you want to do or try.

Consider the following One a Day projects
• Draw, sketch, color, paint
• Cut, saw, piece, sew
• Glue, tear, construct
• Write (short story, chapter, poem, essay)
• Photograph
• Organize: Could be a room where you do something every day so that by Feb. 1 it’s a new and inspiring place to be. Have a collection of stuff? Spend time each day organizing them into a unique display
• Read
• Meditate
• Hike, bike, swim, walk
• Yoga, Qigong, Tai chi

Need more ideas? Check out the Take a Break Pinterest for lots of Take a Break ideas. 



Saturday, January 2, 2016

If You Have a Rare Chronic Condition

Affected by a very rare condition? While the various posts on this blog can be very helpful, it’s hard to find a peer group that you can participate in, let alone readily obtain information about effective treatment. The good news is that there are 30 million Americans living with a rare disease and thanks to the Internet, there are resources that can help you.

Consider the following:

• Rare Genomics Institute:  Gene sequencing can provide the hope of a diagnosis, which often comes as a relief after years of traditional (and fruitless) tests, confusion and debilitating illness. Because of the cost associated with this testing, RGI has a crowdfunding website where families can solicit donations.

• National Organization for Rare Disorders: A patient advocacy organization, NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. Provides a wide array of information, including the NORD database of reports on various conditions. 

• Global Genes: Patient advocacy organization for those with rare diseases. Begun in 2009, there are now 500 global organizations and each year they hold a summit as well as provide news, resources etc. 

• Office of Orphan Products: Mission is to advance the evaluation and development of products (drugs, biologics, devices, or medical foods) that demonstrate promise for the diagnosis and/or treatment of rare diseases or conditions. 

• NIH Genetic and Rare Diseases Information Center: provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.


• Organizations to Help Connect with Others


• Rare Disease Day: The last day in February 

Wednesday, December 30, 2015

Take a Break: Celebrate Breakin’ Up Christmas

Tonight is “Breakin Up Christmas” at our house. This is an Appalachian tradition that celebrates the time between Christmas and January 6 (Old Christmas) or the Twelve Days of Christmas.

The song associated with this time of year has the following lyrics:




“Hooray Jake, hooray John,
Breakin’ up Christmas all night long,

Way back yonder a long time ago
The old folks danced the do-si-do

Way down yonder alongside the creek
I seen Santy Claus washin’ his feet.

Santa Claus come, done and gone,
Breaking up Christmas right along.

The tune most likely was composed by Preston ‘Pet’ McKinney, a fiddler and Civil War veteran from Lambsburg, VA.

There are lots of folklore connected with these 12 days:
• Called “ruling days,” the weather that occurs on each of the 12 days predicts the weather for each month of the coming year.
• Old Christmas, Twelfth Night, Feast of the Three Kings (January 6th) is the time when animals are given the power of speech. if a person would stay awake until almost midnight on old Christmas Eve, then sneak quietly out to a barn or a field where any cattle or sheep were kept, they could hear the animals pray. At the exact stroke of midnight on Old Christmas Eve, the animals would start moo-ing and baa-ing and bellowing… not in their normal way, but almost as if they were crying.
• On the Day of Epiphany a person should never lend anything to anybody because the lender would never get it back.
• The Holy Spirit would manifest itself on the eve of Epiphany in subtle ways.

People would go from house to house, having a dance, potluck, story telling and in general enjoying each other’s company. Furniture would be moved to make room for the guests, dancing and music. The night before Old Christmas (January 5) bonfires and firecrackers would be set, while January 6 would be celebrated with church, family meals, community Christmas trees, and stockings containing fruits, nuts and candy.

While the tradition of “Breakin’ Up Christmas” died back after WWII, it experience a new resurgence in the 1970s and today many of these celebrations are held in dance halls and civic clubs.

Ways to celebrate Breakin’ Up Christmas

• Read the poem Old Christmas From Old Christmas and Other Kentucky Tales by William Aspenwall 1917. 

• Watch legendary fiddler Tommy Jarrell play the tune Breakin’ Up Christmas 

• Host a potluck supper and/or bonfire













Saturday, December 26, 2015

What’s the Most Important Thing for a Good and Healthy Life?

As 2015 draws to a close, and there are many things calling for my attention, I wasn’t sure I was going to have time for a post the day after Christmas. However, watching a TED talk on the outcomes of the Harvard Study of Adult Development, which reached its 75 year mile stone in 2013, I realized how we all approach it from different vantage points, but we reach the same conclusion.

The secret to a long and contented life is love. Having born witness to many people as they close out their lives, it’s not how much money they have, their status, fame or fortune, but rather the family and friends that love them and who they love in return. As one of the researchers on the Harvard study noted, “The seventy-five years and twenty million dollars expended on the Grant Study points to a straightforward five-word conclusion: Happiness is love.  Full stop.”

According to Robert Waldinger, the current director of the Harvard study, there are three very important take away points of the study:

• Social connections are really good for us, loneliness kills

• It's not just the number of friends you have, and it's not whether or not you're in a committed relationship, but it's the quality of your close relationships that matters

• Good relationships don't just protect our bodies, they protect our brains.


On that note, wishing you much love and joy in 2016.