What Patients Want

I recently attended a conference that I really enjoyed. But one thing that struck me as a little discordant was that panelists and speakers seemed completely baffled about what patients want. The way they spoke about us reminded me of how biologists speak about a newly discovered species or astronomers talk about a newly discovered comet or asteroid. They are curious about what they will learn from it, but it is a complete unknown.

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What Is Activism?

I’m not an activist. Or I wasn’t. Too much of a commitment. Takes too much time. Too public. Too much baggage attached to that word. I just wasn’t interested. But the same change in perspective that helped me start sharing my experiences on this blog also caused me to start rethinking other positions I held. I was hesitant when the first activism opportunity came to me. I was already spending several hours a week on the blog in addition to my full time job and taking care of my conditions. But they – the Chronic Disease Coalition – were only asking an hour phone call a month, and I strongly agreed with their mission of supporting or opposing state legislation that affected patients. So, I dipped my toes in the water and became one of several patient Ambassadors who discuss their work and support each other’s efforts where we can.

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A Pedestal is No Place for Children

I have avoided addressing this subject for a long time because I was afraid of offending. But lately I have been watching a channel that runs the St. Jude’s commercial on every break, and all I feel is the overwhelming urge to change the channel. So I’ll just say it. No matter how bad the disease, no matter how tragic the circumstances, young patients aren’t heroes.

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The Magazine People Conundrum

I went on a long car trip this weekend, four plus hours each way. I enjoyed the drive. My brain goes into driving mode on those trips – half focused on the road and half free to wander. I get a lot of thinking done that way. This weekend I was thinking about an event I was going to miss and how not upset I was about it. One of my closest friends was hosting a board game night with several other friends I’d met many times over the last decade or so. Thinking back to the last time we had all gathered, I remember thinking I was happy to be there for my friend’s event, but could have done without all the rest. But my friends obviously enjoyed their friends’ company, so why couldn’t I?

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It's Only FAERS

Some of you may be familiar with the difficulties I’ve been having with my very expensive, cutting-edge Class III medical device. In a nutshell, I discovered the first month that the cutting-edge tech, which was supposed to act as an intuitive pancreas, did not work for me. I called the manufacturer and they had no solution for me. I asked to talk to someone who knew more about how the algorithm worked, an engineer, but of course, there was no one like that available. All they had was the customer service reps who knew less than I did. I had to turn that part of it off.

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174 Units: The Story of a Pharmacy F-Up

Once upon a time, there was a woman whose large employer violated reasonable accommodation laws, which had a severely negative impact on her health. So, she left the large employer for a much smaller one. It wasn’t perfect, but it was much better. Then, after just a year, another large company came along and ate the smaller company. The woman was not encouraged by her first interactions with the large company, and she dreaded the change of health insurance – the second time in two years.

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The Humiliation of Financial Help

Resilience and self-sufficiency are defining American values. From the reverence shown for revolutionaries and homesteaders to the pedestal on which we put entrepreneurs and small businesspeople, it is hammered into our cultural consciousness that a primary goal of our lives is to stand on our own. It is an admiral goal, certainly, but not easy, and not always achievable. When it isn’t, the people who need assistance are often judged as needy and less than.

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On The Horizon

These are turbulent times for healthcare. We are paying too much on all fronts. There have been some phenomenal breakthroughs, like personalized medicine, but for every step forward, it feels like we take a step back. Measles, once thought eradicated, have returned. And recently, the British Medical Journal released a study that found a lot of people who had knee surgery, a common and longtime treatment for certain issues, saw no improvement. But the future is now. What is on the near horizon that could change healthcare for the better?

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Get What You Deserve

How do you want to be treated in a relationship with your provider? I was never bullied. It would have been difficult had anyone been inclined. Out-of-control diabetes took me out of school an average of 40 days a year. And I was always treated like a little adult by my teachers and parents’ friends – also a side effect of my early triumph over medical adversity, for better or worse. But it took a long time for me to understand how I wanted to be treated, how I deserved to be treated, by medical professionals. In fact, I had to be taught by a few special providers that my relationships with my medical team should be no different than any other professional relationship – framed by mutual respect, supported by teamwork, and undaunted by judgment or questions, even if they came in an avalanche.

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