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.

Read More

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.

Read More

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.

Read More

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.

Read More

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.

Read More

What Is Activism?

I’m not an activist. Or I wasn’t. Too much of a commitment. Takes too much time. Too public. Too much baggage attached to that word. I just wasn’t interested. But the same change in perspective that helped me start sharing my experiences on this blog also caused me to start rethinking other positions I held. I was hesitant when the first activism opportunity came to me. I was already spending several hours a week on the blog in addition to my full time job and taking care of my conditions. But they – the Chronic Disease Coalition – were only asking an hour phone call a month, and I strongly agreed with their mission of supporting or opposing state legislation that affected patients. So, I dipped my toes in the water and became one of several patient Ambassadors who discuss their work and support each other’s efforts where we can.

Read More

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.

Read More

The Magazine People Conundrum

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?

Read More

It's Only FAERS

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.

Read More

174 Units: The Story of a Pharmacy F-Up

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.

Read More