(or How to Financially Advocate for Yourself Without Going Totally Crazy) FRUSTRATING! I am sure most of you have had difficulties dealing not only with your insurance company, but also your doctor’s office, the hospital and their doctors. I am going to try to help you out here with what I have learned and how I am dealing with all those different entities. I will try to keep it clear and easy. You may contact me for more detailed explanations and understanding for why I do what I do. [See comment section at the end of this blog]. There are...

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I’ve applied to a lot of companies over the years for a variety of jobs. You know how it goes. They tell you what type of superhero employee they’re looking for, and you tell them how your particular superhero cape comes in every size, shape and color that they happen to need. You land the job and after a short period of time, you’ve conquered the learning curve, multitasking like a pro. Everyone relaxes, and you start arriving home most evenings at a reasonable hour. Even when you love your job, there still is that moment each day when you...

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[Editor’s Note: Over the years Patient Power has heard from many patients and care partners. With our ongoing “Where are they now” campaign, we get an opportunity to check in and hear updates from Patient Power’s amazing community members. In this blog, Diana Riley shares with us her latest news. For previous conversations with Diana, click the link below.]  Diana’s Story: A 17-Year MPN Journey “…For the times they are a-changin’.” Bob Dylan wrote those words in the 1960s and, though change is never easy, those of us with MPNs are happy to see change. When I was diagnosed with essential thrombocythemia in...

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[Editor’s Note: This blog has been reprinted by permission. It was originally printed in the publication, Patient Resources.] In March 2008, at 52, Randall (Randy) Broad was active and in good health, except for a nagging cough. Chest X-rays and an endoscopic examination showed nothing and, according to his primary care physician, his symptoms didn’t warrant more expensive tests such as an MRI or CT. It wasn’t until he coughed up blood nearly two years later that he was sent to a pulmonologist for a bronchoscopy. A 3-centimeter mass in his lower left lobe was hiding behind his heart, and...

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World Lung Cancer Day…August 1, 2016. Four years ago was the very first World Lung Cancer Day. It isn’t a fun day like Grandparents Day or a birthday. It isn’t a silly day like National Pizza Day or Hammock Day…There are 365 days each year, and we celebrate birthdays and anniversaries, graduations, and weddings. World Lung Cancer Day isn’t there to celebrate—just the opposite. We are trying to raise awareness for the deadliest of all cancers—worldwide! In 2012, there were 14.1 million new cases of lung cancer with 8.2 million deaths. That’s not cause for celebrating. It’s ironic that the...

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Late last month, Vice President Joe Biden held a Cancer Moonshot Summit at the White House, the intent of which was to vastly accelerate the “…understanding, prevention, diagnosis, treatment and care of cancer…” This summit had over 350 guests including Andrew and Esther Schorr, as well as 6,000 others participating throughout the United States. I became aware of this initiative when Tom Brokaw interviewed Vice President Biden on national TV just days ahead of the summit. Mr. Brokaw has been with NBC News since 1966 and was network news anchor for over 20 years. During the interview, Mr. Brokaw talked...

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In my last blog, I had an aha moment where I realized that I am becoming an advocate. I have had many titles over the years: daughter, sister, wife, mother, military spouse and volunteer. In all of those titles, I also realized that I tend to be a little controlling and driven. But never once did I associate the title “advocate” with who I was. Today, I’m learning what that new title means as I try to figure out how it is that I evolved into this new role. Being an advocate is sort of like being a mom. One...

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I have to begin this blog on a sad note. There have been personal and national tragedies that occurred since I agreed to write a blog about hope and optimism. I lost three friends to cancer in a week's time ... and last night, my city lost five police officers who were gunned down in cold blood while doing their job of overseeing a peaceful protest march. Sometimes, events make it hard to see joy and optimism, but it's still there. We just have to look a little harder. Even though I will miss my friends badly, they each outlived...

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Patient Power Europe ha ganado el Communiqué Award 2016 en la categoría Excelencia en Comunicación Digital - Productos de prescripción / Salud del Paciente. La ceremonia tuvo lugar en Londres el 7 de julio y reunió a centenares de profesionales de la comunicación del sector salud. Los jueces destacaron que Patient Power es un "proyecto enfocado a los pacientes" y "un recurso valioso de gran credibilidad". Los Communiqué Awards están diseñados para "reconocer y elogiar las mejores prácticas en comunicación de salud a nivel local, europeo e internacional." El equipo de Patient Power Europe está muy feliz por este reconocimiento y agradece a...

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Patient Power Europe won the Communiqué Awards 2016 in the category Excellence in Digital Communications - Prescription Products / Patient Health. The ceremony was held in London the 7th of July and gathered hundreds of professionals in the field of healthcare communications. The judges highlighted that Patient Power is a "patient-focused project" and "a valuable and nicely designed resource for patients that clearly conveys its credibility." The Communiqué Awards programme is specifically "designed to recognise and commend excellence and best practice in local, European and international healthcare communications." The Patient Power Europe team is very happy for this achievement and thanks...

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