Mea Culpa

I have an apology to make. I muted someone on Twitter based on a gut reaction and an assumption.. I didn’t want to get into a Twitter conflict, and I have been trolled before by people looking to get me to give medical advice, so I hit mute and went about my day.

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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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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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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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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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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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