I tumbled into what the Aflac commercials call “major medical” just before I turned six. Not one to do anything by half measure, my body decided to go with B strep meningitis.
During my recovery, I got my first taste of defying expectations.
First, I was expected to die.
Then I was expected to be in a persistent vegetative state.
Then I was expected to be confined to a wheelchair for the rest of my life.
I had other ideas.
Less than 10 years later, I was diagnosed with type 1 diabetes. This time when I defied expectations, it wasn’t such a good result. I was non-compliant for six years before I started developing major complications that threatened my vision (retinopathy) and my ability to walk (peripheral neuropathy). Thinking about all the work I had done to regain my ability to walk after the first round, I was literally scared straight.
Even after getting myself under control, I learned the hard way that the worst thing about diabetes is that sometimes it doesn’t matter. Complications are often delayed. I ended up with kidney disease and a bunch of other, less serious complications. I am lucky, though, because for the last several years, all of my conditions have either remained stable or improved, including the kidney disease. I have no idea how (and neither do my providers), but I have somehow gone from stage 3 to stage 2, which means I may not need a transplant down the line after all.
Put it all together and I have been a cog in the wheels of big healthcare for over 30 years. I have been patient and caregiver. I have built a team to help me stay on track. I have managed complicated insurance coverage, studied policy, and acted as a counselor to friends, family, and colleagues. I have clarified the system for them, helped them avoid painful mistakes, and advised them how to make themselves heard. Now I would like to share my expertise with you.
Email email@example.com to get in touch!