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.

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.)