My friend Kathy contracted shingles last Fall.  She is still suffering.  Her biggest regret, she tells me, is that she didn't listen to her doctor when he told her last spring to get the shingles vaccine. Because her insurance didn't cover it, she didn't follow through.

Kathy is just miserable. She has shingles on many parts of her body, in her hair, and on her eyelid, swelling it almost closed.  Sometimes the pain seems to fade a little, but then she gets new flares of it.  She just can't get rid of it.

"I couldn't believe I got shingles," she told me.  "I mean - I had chicken pox when I was a kid.... I thought that meant I couldn't get shingles!"

But it turns out, that's the opposite of the truth.  Shingles (Latin name: Herpes Zoster) attacks people who DID have chicken pox during childhood. So, if you had chicken pox, then you could end up being one of the one in three Americans who contracts shingles as an adult.

And it's a miserable condition to suffer through. According to the Mayo Clinic, the first symptom is pain, followed a few days later (for most but not all patients) by the rash.  It may last just a few weeks, or it can last (as it has for Kathy) for months.

One of the biggest problems is getting it near an eye, which can result in loss of vision.  That's Kathy's biggest fear, of course.

Recently we've been seeing commercials on TV for Zostavax, the shingles vaccine.  The vaccine has been around for awhile, and has been found to be safe, causing only a bit of redness and some achiness in the arm from the actual shot.  Kathy tells me she'd give anything to have put up with only a couple days of a sore arm not to have shingles.

I'm not a huge fan of TV commercials for drugs or other medical substances.  In fact, I'm quite vocal about getting rid of them!  But I AM a fan of vaccines for preventing diseases that can be prevented.  Shingles is one of them, and unlike vaccines like the flu vaccine, the shingles vaccine is specific and doesn't change from year to year.

And - a big change for 2012 - is that the shingles vaccine IS covered for those who have Medicare Part D for prescription coverage, and possibly Part B for those who don't have Part D (check with your primary care doctor.)  I know my TriCare coverage will pay for my shingles vaccine.  You will want to check your insurance to be sure it covers you for the vaccine.  But even if it doesn't, you should discuss the possibility with your doctor if you are over the age of 50, especially if you are over age 60.

I'll be getting the shingles vaccine in about three weeks.  I've seen my friend suffer. My mother suffered with shingles, too - although not nearly so badly as Kathy has.  I just don't want to even think about it.

What about you?

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Just back at my desk after several days in Washington, DC where I attended (and spoke!) at a patient safety conference which both astounded and delighted me - and gives me hope that progress is being made, even if it's ever so slight.

Among the VIPs were many highly respected attendees and speakers were some names you might recognize.

•  Capt. "Sully" Sullenberger, the captain of the plane that safely landed in the Hudson River in 2009,  described the 208 seconds from when he realized his jet had lost an engine until the flight came to rest in the Hudson... riveting.  He was there to show us how airline safety lessons can be applied to healthcare, too.

•  Farzhad Mostashari, MD, the National Coordinator for the nationwide implementation of electronic health records spoke about "meaningful use," including the need to be sure patients have access to their own records to help them in decision-making and their own safety, too.

•  And Nancy Conrad, wife of astronaut Pete Conrad. A space flight hero, Pete flew four space missions and was the third person to walk on the moon. While the official notices of his death say he succumbed to injuries from that motorcycle accident, it turns out he died due to a medical error in the hospital. Since then, Nancy has been working with patient safety leaders to try to affect changes in how safety issues are reported, and how safety steps can be better implemented in hospitals.

Hearing Nancy's story, and seeing the strides she has made to promote patient safety, and further rubbing elbows with some of my co-patient-safety-colleagues, reminded me of the fact that we all have that possibility in front of us - the possibility that we can take our very negative experiences and turn them into something very good for others.

I call it Proactive Survivorship.  It's the concept that says that once you've had a horrible, negative experience, you can dwell on it, and suffer from it.  Or you can turn it around into something that will help others - perhaps preventing them from suffering in the same ways you did, or fixing a wrong that exists in the system.

I've written before about some of these folks, several of whom were in attendance last week:  In addition to Nancy was Regina Holliday, whose husband died after a number of horrible experiences.  Now Regina tells her story in a variety of venues and even more impressive, Regina paints her impressions of safety conversations.  Karen Curtiss founded Campaign Zero, has written a book for patients and caregivers, and speaks on issues relating to infection safety.  Tiffany Peterson survived years of attempts at getting diagnosed, and still has trouble working with her providers sometimes. But Tiffany blogs and tweets to help fellow Lupus patients.

And me - yes - I am a proactive survivor.  Had I not suffered my own medical mistake (being misdiagnosed with terminal lymphoma), I would not write and speak to help patients today.

Who do YOU know who has turned their negative experience into something good for others? Maybe it's YOU. Or maybe it's someone you know or care about. Or maybe it's a stranger whose proactive survivorship you admire...

Maybe that person has started a non-profit organization.  Or maybe he or she simply phoned someone who needed support.  Turning bad into good doesn't have to be done on a large, grand scale. The biggest steps AND the smallest, help other people.

So - here's an official invitation to you to share a story of a proactive survivor - you (yourself!), a friend, a loved one, or simply someone you admire.

Share your story of turning healthcare lemons into lemonade to encourage us all to help others which, in turn, helps us even more.

(Comments are welcome - but stories should not be shared in the comments section.  Please share your stories so they won't disappear like blog comments do!)

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That word is a mouthful:

DIS-auto-NO-mee-ya

I had never even heard the word until about 10 days ago when it was described to me by Dr. Rich Fogoros, our About.com Guide to Heart Disease.  (Now - don't go running because you think this post relates to heart disease - it doesn't!  Hang in there with me...)

I had actually just completed my new articles about Lyme Disease, and as many of you know, anytime we Guides cover medical topics, they get reviewed by medical people - like Dr. Rich.  He was asked to review the Lyme articles and felt that some of the information I'd written about "chronic Lyme" wasn't entirely kosher.

(It has since been corrected, and does relate to this piece - so hang in there with me a bit longer....)

It was at that point he described dysautonomia to me.  I was fascinated.

As a disease / syndrome / disorder it's a tough one.  But as an ANSWER, it's a V-8 moment! (Yes, picture me slapping the palm of my hand against my forehead!)

Here's why:

The causes and symptoms are described to me on a very regular basis by people who tell me they cannot get a diagnosis, and they have heard a half-dozen times from doctors that there is nothing wrong with them, and that their problem is all in their head.

They are described to me by people who are ultimately diagnosed with chronic fatigue, or fibromylgia, or IBS - or any of a number of other disorders or syndromes that might be diagnosed, but don't seem to have a real CAUSE.

Yet (except for one form of genetic dysautonomia, called Riley-Day Syndrome) there does seem to be a cause - some sort of trauma.  It might be trauma in the classic sense (from a bad accident to PTSD from a roadside bomb).  OR, it can be trauma from a virus gone crazy in one's body or even (you guessed it) an previous rampant infection, like from Lyme Disease.

So to me, based on what I've heard from hundreds of patients over the years, dysautonomia is an ANSWER.  It subtracts the "all in your head" and the "no known cause" - and helps patients and their doctors figure out what to do next.

If you are one of those patients, you owe it to yourself to learn more. Here are the basics about dysautonomia, aligned with known causes, symptoms and eventual diagnoses.  Included in the article are some great resources for follow up, too.  Included is a place on Dr. Rich's site where patients share their experiences. They might be interesting to you.

So thanks to Dr. Rich for opening our eyes.  And, I'll pass on YOUR thanks if you find something in here that helps you.  If you do, please let us know!

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WATCH THIS VIDEO BEFORE IT'S TAKEN DOWN!

How many of those emails have you received?  The ones with a link to a video that is either political in nature or in some way proves that "they" are out to get us....

In the same vein as all those email claims that are written by either:

• Conspiracy theorists who want you to believe the government is trying to take us over by insisting we be vaccinated with something that is going to kill us (whereupon I have to ask - if that's so, then how will "the government" get paid when all the taxpayers have died?)
• Conservatives, including Super PACs, who issue frightening email claims to rally the masses to tell lies about healthcare reform or political candidates.  (And yes - they are all written and sent by conservatives.  In the 20+ years I have had an email inbox (yes, since 1989) - I have yet to receive a claim in my email written by a liberal making false claims about a Republican or Conservative stand or politician.)

You know you've received them in your email too!  (And let me remind you before I continue - that I am a registered Republican, and on many issues, I shamefully admit that I am considered to be on the same "side" as those who would scam us.)

Many of these emails and links are health-related - from the Muslim practice of Dhimmitude which will preclude Mulsims from having to buy health insurance (not true), to the diseased green monkeys that are used to develop vaccines (also not true), to Senior Death Warrants (not even close) and more - they are scams and hoaxes and are put together to scare you away from getting good  medical care, or to get you to  decide against specific non-conservative policies, or  to encourage you to vote for a Republican.

And you know what?  For too many of you they work!  And worse - you pass them on! I don't say that to cast dispersions on anyone. You can read here why it happens, why you are so willing to believe what you read, and why it's important to vet the information before you send it to someone else.

Now - this is important.  Sometimes good, informative material does cross my desk. And once I double check to be sure it is true, I do learn quite a bit.  The problem is - there will be only one of those for every 50 that are just outrageous.  Further, most of them have some little modicum of truth to them - which too many people take to mean the entire set of claims is true and correct.  That's just not so.  The entire piece needs to be reviewed before you send it to someone else.

So I have some new and updated tools for you - to help you review any of these links and videos that are sent to you, so you can make a wiser decision about their veracity:

1. I have updated the list of resources you can use to do an objective review.

2. I have started a list of those emails and links so that when we do review them, they will be easy for you to find.  Some of these claims will curl your toenails. In other cases you'll find people who have lied about their credentials telling you things that aren't true.

3.  There is a place here at About.com Patient Empowerment where we are collecting the outrageous claims you find and either supporting their truth, or debunking their lies. You can make your contribution here.

In particular this year, as the election cycle picks up steam, and as those Super PACs continue to send out their lies and hoaxes - you owe it to yourself to stay on top of the truth before you share bogus information, too.

Because, I swear, it won't be Obamacare that kills Granny. It will be the heart attacks that result from the lies and vitriol that were fabricated by those who stand to lose money if healthcare reform continues to be implemented and if the president is re-elected .... the same lies and vitriol being shared by people who don't know they are being fooled.

P.S. I'm a Granny. And I have no fear (although yes, some concerns) about ObamaCare.

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