APRIL 2015
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End Lupus Now!
Getting excited about the May 3, 2015
Walk to End Lupus Now™ event in Tampa.
Can't wait to wear my purple pants and running shoes again! I invite you to join my team or check out my story at: Join Cindy.
Hi Friends,

April showers bring May flowers, unless you live in Florida. We don't have many showers in April and the flowers are already blooming! Although we always seem to need rain, I love sunny days (yes, I wear sunscreen always). Sunshine and smiles go hand in hand for me. That is why I live in the South!

I hope the weather where you are is beautiful and bringing a smile to your face. If not, feel free to come on down and join all our visitors celebrating Spring Break!

Hugs, Cindy 
featured article | Love Beyond Lupus   
On April 30th, I will have been married to the same man for 38 years. Wow, that is many years over half of my life. And the really great news is that the marriage is still going strong! Although it is a bit cliché, I can honestly say I love him more today than I did the day I married him. The love is more mature (and so are we), we understand each other better and, yes, we both still love Florida State football, fishing and spending time together. I count my blessings every day.

I feel especially lucky when I read the statistics of divorce in America, which hover somewhere around 50% depending on all kinds of factors like age, number of previous marriages, etc. But here is the really amazing, yet not surprising thing: The National Health Interview Survey reports that the divorce rate for those with chronic illness is 75%. When I speak to groups living with chronic illnesses, I often realize how many people in the audience are divorced. But when you think about it, it is not surprising. Chronic illness places a tremendous toll on a relationship.

I was diagnosed with lupus three years into our marriage. When we stood on the altar and promised to love each other in sickness and in health, I can tell you we both envisioned "in health."  We were young, athletic and competitive, and thought we would stay that way forever. My lupus diagnosis rocked our world. It created physical, mental and financial stress that, quite honestly, we were not prepared to deal with. As I look back on that time of our life, I can understand why many marriages do not survive the unexpected forced change that accompanies a diagnosis of chronic and invisible illness. However, in our case, we both took
April 30, 1977 with new husband Tony
our vows very seriously and loved each other beyond the lupus. We worked hard and learned to communicate in ways that were effective. We held on to the things we loved about each other and tried to see past the immediate struggles. It was not easy, but I'm one who believes the great things in life are worth fighting for and, luckily, my husband feels the same way. Not all who suffer with illness are so fortunate and for this I'm very sorry. It is challenging enough to live with lupus; I cannot imagine doing it without the love and support of my husband, friends and family. That love and support is what gets me through the really tough days.

So, when the end of the month rolls around and I celebrate over three decades of marriage, I'll also whisper a little wish that everyone reading this has someone who loves them, someone who makes them laugh, and someone who looks past the wrinkles and sees the beauty within. Love to you all!

"Everyone wants to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down." ~Oprah Winfrey
 
books |What Cindy's Reading

The Patient Will See You Now: The Future of Medicine is in Your Hands
by Eric Topol, M.D.

I love to think and this book definitely got me thinking! Dr. Topol's mantra throughout the book is: Nothing about me (the patient) without me. He points out that medicine is the only place where a purchased product does not become the property of the purchaser. He goes on to explore all the technological advances that will make owning our own medical information a reality some day. His focus is on the shift from doctor-centered care to patient-centered care and his examples are fascinating. As I read the book, I could envision the healthcare that he spoke of and found myself wishing that some of it were available today. Although we are moving in this direction and I've been privileged to bring the patient voice to the table at many meetings with doctor's and researchers, I do believe that a system where the patient is at the center of all decisions and in full control of all data will take both doctors and patients working together toward this common goal. Although many support the concept of patient-centered medicine it is a paradigm shift that will require a new mindset by both patients and their healthcare professionals in order to come to fruition. I highly recommend reading this thought provoking book.

A Dangerous Place: A Maisie Dobbs Novel 
by Jacqueline Winspear

This is a purely for fun book, which I needed after I got my brain buzzing on The Patient Will See You Now. A very special family member who later succumbed to cancer recommended this series to me. She read the series while she was undergoing chemotherapy. This is the 11th book in the historical series about a woman who is an investigator and a psychologist that cannot help getting involved in solving mysteries. The books are free of foul language, sex and violence. I've thoroughly fallen in love with Maisie Dobbs! Sending a thank you to heaven to Ester Sparks for recommending them!

P.S. Also read The Boston Girl: A Novel by Anita Diamant and enjoyed it. Needed more fun reading than thinking this month with all the changes going on in my life!

encouragement
Read Cindy's latest blog entries Visit our blog
3-30-2015 

During a recent doctor's visit, a new (actually old, recycled in my case) medication was recommended [cont]...»

 

3-23-2015

Now that we have officially sold our home of 31 years, everyone, including my husband, keeps telling me this is a great time to sort through all we've collected and get rid of things [cont]...»

 

3-16-2015

I've always loved the quote, "Home is where the heart is." There is something about it that just rings true for me. [cont]...»

 

3-09-2015 

Have you ever gotten to the point where everything in life just seems way too serious? [cont]...»

 

3-02-2015 

I do not like peas. I have never liked peas. [cont]...»

Voluntarism | Healthy Benefits

Research has shown that one of the things happy people do is volunteer. I'm a HUGE supporter of this concept and find it impossible to be sad or consumed by my own challenges when I'm helping others.

Five years ago, as a national board member of the Lupus Foundation of America, I helped start the Walk to End Lupus Now™ event in Tampa. So many lupus patients have never met another person with the disease, leaving them with feelings of loneliness and isolation. For newcomers to the event, imagine their faces when they see 1,500 participants in purple who raise over $150,000 a year! It gives everyone with lupus HOPE and that's what I'm all about.


Find the event in your area or join Cindy's team in Tampa!


Thank you to EVERYONE who has supported me in the past.
I love you all and don't know what I'd do without you!
 
Where's Cindy? | Upcoming Appearances

airplace-takeoff-sunset.jpg Baycare Patient Centered Medical Home Seminar
Keynote Address-Partners in Healing
May 19, 2015, Clearwater, FL

Walton County Prevention Coalition Leadership Training
Mission, Money and Multitasking: Sustaining Your Nonprofit
May 13, 2015, Florida Panhandle

Walton County Prevention Coalition Leadership Training
Is My Board Bored or Onboard?
June 24, 2015, Florida Panhandle

Scleroderma Foundation National Patient Education Conference
Opening Keynote Address
July 17-19, 2015, Nashville, TN
More Information
I would love to speak to your group. Simply contact me at cindy@cindyconey.com and we'll work out the details!
 
ABOUT CINDY CONEY Nationally recognized keynote speaker and resiliency educator Cindy Coney has assisted thousands in moving beyond "coping" with limitations to recapturing joy, balance and freedom through her speeches and pioneering educational training for patients and healthcare professionals. Diagnosed with lupus in 1980, Cindy has traveled the globe to share her story of thriving after a chronic diagnosis. Read more.