Pyramid

All chronic patients depend on their providers, some more than others. It’s kind of like a cheerleaders’ pyramid. I’m at the top balancing precariously depending on how well I’m doing with my own care. Holding me up are a couple of levels of supporters – providers, family, friends, even my employer. Some are bearing more weight than others, and if something happens to that support, it can bring the whole pyramid tumbling down.

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This Is Us

We try to stick to the healthcare lane here at The Patient Advocate’s Chronicle, but it’s become abundantly clear in the last week or so that this election has become much bigger than one policy issue, or even entire policy platforms. Not that we were perfect before, but in the last, say, three years, we have become a place where it is ok to solve perceived problems with violence against anyone perceived as “other”: other than white, other than male, other than the “right” religion, other than from here.

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And Stigma for All

Today I learned that someone very young and close to me has Celiac Disease. It made me sad. This young’un will have to live within some very strict guidelines for the rest of their life or risk serious damage to their body, anything from malnutrition to an increased risk of certain kinds of cancer. No kid should be so constrained at the outset of their life. They should be able to grow and explore the world around them—including food! – however they like.

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Channeling Fear

With 18 days to go until the midterm elections, there is no denying that healthcare is taking center stage. It’s smart strategy for candidates, considering that voters still name healthcare their #1 issue. There has been a host of action and activism around preserving pre-existing condition protections (that’s us!), lowering prescription drug prices (us, too), and ensuring access for all (oh, look – us again). It’s such a big issue that, after eight years of trying and failing to repeal Obamacare, Republicans have stopped mentioning it at all on the campaign trail for fear that their positions will further enrage voters.

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Down the Rabbit Hole

Devona Jefferson, frustrated with the toxic work environment that was wreaking havoc on her lupus, reached her wit’s end and jumped down the rabbit hole. But such jumps are never simple. Devona was already doing fine art photography when she left her job, and knew she wanted to expand that into a business. The problem was she had no business plan beyond a vague idea that she should approach galleries to display and sell her art.

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Wit's End

This is Devona Jefferson. I met her through a mutual friend and found out that she has recently achieved something many of us have dreamed of, but are too afraid to try. Devona has always been creative. She picked up a camera for the first time when she was just 11. It was a Kodak 110, one of those flat black rectangles with a flash bulb that looked like a giant Lego piece. She was immediately taken with the artistic medium, and her father got her a 35mm camera for her college graduation so she could run with it.

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It's A Start

Over the last couple of years, I have been fighting the weight gain that accompanies out of control Type 1 diabetes when you get it back under control. In the past two years, I have gained nearly 50 pounds due to some pretty big circumstantial and psychological stressors. I have often felt desperate and helpless against the onslaught of this kind of weight gain, and there have been times where I have had to make a conscious choice not to do things that would be overtly harmful to my body, like allowing my blood sugars to stay high so I don’t gain weight. (The weight gain happens when your body goes from high blood sugars that don’t allow you to absorb all the food you are eating to good blood sugars, where your body absorbs every calorie. Ten pounds every time.)

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Personae

If you’ve ever seen that word before it was probably at the beginning of a cast listing for a play, which only makes sense since it’s the plural of persona, “a role or character adopted by an author or actor.” But it has also come to mean the face we show the world. Without a public persona, there would be no privacy. Everyone we know would know everything about us. My colleagues see a version of me that is completely different from the one the friends I grew up with see. And, of course there is little or no persona with family. Hard to hide anything from the people who were there to witness you develop all your flaws.

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