Waiting

Last week I found out that they need me to come in for additional, more detailed imaging of my left breast. It is hard to keep myself from considering worst case scenarios. Well, the worst case scenario. I can’t even type it. Cancer.

It’s a cruel, horrible process, the waiting. You get a call that sets off a claxon of an alarm bell in your head, then they tell you next to nothing. It forces you into a state of hyper anxiety that can’t be eased until you know one way or the other, which could be a day, a week, a month, depending on your schedule and theirs. For me it is going to be eight days. A very long and distracted eight days during which I have to pretend -- even to myself – that everything is normal.

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Bracing for the Worst

Today, all I want to do is curl up with a book and pretend the world doesn’t exist.

I had two routine procedures last week, a mammogram and an ultrasound of my kidneys and bladder. On Saturday, I picked up several neglected voicemail messages. The radiology center had called asking that I call them about one of the procedures I’d had. With my history, I couldn’t help but worry. These are the times you really hope it’s about billing.

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Dangerous

There has been a lot of news lately about the efforts on many fronts – grassroots, federal and state lawmakers, and patient groups – to address astronomical drug prices. Although there are a lot of essential medications that need to be more affordable, the headliner drug for these efforts is insulin. Insulin is a “clean cause”. That is, you don’t “do something” to get the associated condition (Type 1 diabetes), it affects children, and people die without it. Also, since 1972, it has gone from $1.49 per vial (~$9 adjusted for inflation) to an average of about $300 per vial. Since they can’t afford it, many diabetics who need it are rationing – they are only taking as much as they can afford, as opposed to enough to keep them healthy. Eventually, if they don’t get what they need, they die.

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Beyond Nuisance

I’m dragging and I can’t figure out why. My blood sugars aren’t right, and I feel like I have overcommitted on some projects. But this is different, not something that can be addressed with more sleep or caffeine. I know this because I am getting 8-9 hours every night and I have tried caffeine, which I don’t really drink unless I need it to not fall asleep at my desk. No, this is a long-lasting fuzzyheadedness that is affecting my productivity. I probably would have spent last weekend in a Game of Thrones watchathon anyway, but I shouldn’t have felt like I needed to. And on Monday, I was tired enough to trip over a free weight right in front of me, and I think I sprained my pinky toe. Even if it’s not sprained, it did bleed all over my off-white carpet.

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Minimized

A few weeks ago, I marveled at a panel of healthcare professionals and policy experts who seemed to never have talked to a patient before. I wanted to stand up and say, “We’re right here! TALK TO US.”

Recently, I spoke with someone who pointed out that it’s not that simple. He told me a story about a woman who had migraines – some of the worst pain a person can experience. She minimized how difficult her condition was to the point that her teenaged son, someone who lived in the same house with her, didn’t understand how her condition impacted her life. He thought they were just headaches and didn’t understand why she couldn’t just get over it.

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The Other Fine Print

A conversation last week made me realize that there may be some things that employer health coverage provides that people are not aware of. There has been a big push toward workplace “wellness” programs in the last few years. After all, prevention of a condition is much cheaper than treatment. (In this case, I mean conditions that are affected by diet and exercise.) And if we are going to pay through the nose for that coverage, we might as well take a page from the insurers’ playbook and squeeze every last cent we can out of them.

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Actions Speak Louder Than Words

 I was going to do a political update this week, go over some of the proposals 2020 candidates have been putting forward, but today the Trump administration finally revealed their true intentions for healthcare. House Speaker Nancy Pelosi promptly countered with the announcement of a bill aimed at fixing loopholes in the ACA that are hurting Americans.

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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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