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?

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.

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.

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.

I am a rule breaker. I believe that the best way to know how something works is to learn how to cheat, at least medically speaking. Listen to the “rules”, test them, and then figure out something that works better for you. That’s how I learned how my body works with each diagnosis. I suspect that most chronic patients do this.

There are lots of costs to consider when choosing a new health plan. It’s not just premiums, or even deductibles or co-pays or coinsurance. It’s also the cost we pay in time. Calls to the insurance company checking what’s covered, figuring out what happened to the prescription we renewed, submitting out-of-network reimbursement forms, and on and on. All of that takes time you could be using to live your life

We had early Thanksgiving this year. It was awesome. I shared a room with my niece and nephews, like a giant sleepover. I was perfectly willing to sacrifice a little sleep when the 2-year-old popped up at six in the morning calling, “Wake up, guys. Wake up, guys. Wake up guys.” Best alarm clock ever!

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.

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.

I have never really been a joiner. Support groups and alumni associations never did anything for me. I didn’t feel like sharing with anyone except people I already knew pretty well. That worked for me for about 38 years.