I quit my job last fall because I was overwhelmed with the near impossibility of balancing work and family. I was so overwhelmed, in fact, that I was diagnosed with situational depression and anxiety (more on that topic in my next blog entry). This was not an easy decision for our family for a variety of reasons, including the loss of my salary and benefits. We all know that having good insurance is not negotiable. When I quit, I had to wade through the complexities of buying insurance for our family, and while I am grateful that Obamacare eliminated the madness of “pre-existing conditions,” the outcome isn’t cheap.
The plan I selected was one of the cheaper options, and while it allowed us to continue with our beloved pediatrician, it is not accepted at the Medical University of South Carolina (MUSC) where my endocrinologist, ob/gyn, psychiatrist, and dermatologist have practices. I waited until my prescriptions ran out before I started looking for a new endocrinologist. I know, bad idea. I’d gotten accustomed to the ease of sending my endo a message through the MUSC patient portal when I needed a new prescription, and when I realized it was time to renew, I was shocked to discover that as a “new patient” it was going to be 90 days before I could get an appointment. “But I need test strips and insulin!” I shouted at the person on the phone. “I can’t wait 90 days!” I knew that I only had myself to blame, and I also knew I could buy cheap test strips at CVS, but still, 90 days? I wasn’t a new patient, not really; I was a patient who’d been managing Type 1 diabetes for 30 years. Couldn’t we bypass all the ridiculousness of the “new patient” paperwork? Couldn’t a doctor just write me a script for test strips? Why did I have to wait 90 days to buy something that I needed to survive? My breathing quickened. I started to sweat. I hung up the phone and called every other endocrinologist in the area and got the same answer. No one could see me. I took a deep breath and made an appointment for three months in the future.
Ninety days later I met my new endocrinologist. I was wary. There is a part of me that feels like I don’t really need an endocrinologist. I’ve lived with this disease for 30 years (and studied and researched and written about it), and I often feel like there is nothing the doctor can tell me that I don’t already know. I realize this sounds haughty, but it’s true. I tried to put on my good patient persona when the new doctor entered the room and answered his questions respectfully until he started talking about the pump and seemed surprised that I didn’t use one. I explained, as I have explained many times before, that I don’t like wearing a piece of medical equipment on my body. I knew it was an old-school approach, but I tried the pump and have realized that multiple daily injections works best for me. I left the appointment with renewed prescriptions for test strips and vials of insulin, but as I walked to my car, I felt like I’d gotten a bad report card. This is my disease. I am the one who has to live with diabetes every single hour of every single day, so why did I care what the doctor thought?
Some days I feel like I deserve a medal for managing this relentless disease. This disease that is mostly invisible (unless I wear a pump). Logically, I know that I’m not doing this for a medal. I’m doing this work because I want to be here, in good health, to see my boys grow up and grow old. I’m doing this because I don’t have any other choice. But sometimes, when I’m feeling sorry for myself, I wish that my relationship with doctors and insurance providers was more supportive. My mom, who is a therapist, tells me my expectations are not realistic. I know she’s right, but I also will continue to search for my ideal endocrinologist. In case he or she is out there reading this, here’s my dream doctor:
• A doctor who knows about all the latest technology and has the supplies in the room for me to play with.
• A doctor who tells me I’m doing a great job and has a sense of humor.
• A doctor who has Type 1 diabetes.
• A doctor who believes the best treatment plan is one that is sustainable over the long haul.
• A doctor who can talk to me about running and low-carb diets.
• A doctor who can connect me with other patients.
This is my dream doctor — what about you? What qualities would make up your dream doctor?
How can you safely fast for Ramadan with diabetes? Bookmark DiabetesSelfManagement.com and tune in tomorrow to get tips from nurse David Spero.