When I first shared my story here, I kept it vague for 2 reasons. First of all, I was still annoyed that my professor assigned diabetes as my blog topic and felt it was nobody’s damn business. The second, and more important, reason is because I felt like my story was, well, weird. At the time I didn’t know the D-OC as well as I do now and I wasn’t quite yet convinced that there was anyone else out there “like me” no matter how much support I was seeing as I slowly became more immersed in the community.
The longer I went without talking about it, the harder it became for me to talk about. But then last week I found myself talking about it with such ease it was as if I’d been openly talking about it all along.
I know that you’ve all probably noticed that while I talk about injections, I’m not talking about basal rates and units of insulin.
That’s because I’m on Byetta.
I owe my health to the lizard spit. But it took a long journey to get me here.
I was at a point where I’d given up on doctors, on ever feeling healthy again, and then that scary night happened.
I remember crying in my PCP’s office telling her all of the symptoms I was having. I’d wake up in the middle of the night either starving or thirsty. I’d be working out at the gym and suddenly feel like I was going to pass out. I was randomly getting excruciating headaches and sometimes my teeth felt weird. I was exhausted and it seemed as though my vision was changing daily which is exceedingly frustrating when your parents are opticians. My PCP referred me to an Endo in town.
When I walked into the Endo’s office, I was scared. I fully expected this to be another doctor who had no idea what to do to help me. The nurse took me directly to the god forsaken scale. I nervously stammered that I’d rather not know what it said and she said “I don’t need your weight to know you’re wonderful.” I just stared at her dumbfounded. In that moment, I was hopeful that even if this doctor couldn’t help me, she’d know who could.
The Endo came into the room and sat directly across from me. Not on her stool, not standing by the exam table, but right across from me as if we were having coffee and chatting. I nervously stared down at my list of weirdness and told her I didn’t really know where to start and most of it didn’t make any sense. She smiled and said “take your time and tell me anything that’s on your mind – it’s my job to make sense of it.”
I let it all out. I told her everything I could think of and she patiently listened while furiously taking notes. She looked like she was studying for an exam – she had 3 or 4 different sheets of paper she was writing on and I could tell she was using them to organize her thoughts.
When I was done she said “I can’t promise we’ll find the answers right away, but I CAN promise that whatever this is, we won’t stop until we figure it out.”
I was so relieved. I knew she wanted to help and – more importantly – I knew she didn’t think I was crazy.
She told me that diabetes was likely because of my history with PCOS but she also didn’t think I was Type II from what I’d reported to her. She wanted to get her hands on the tests that were “inconclusive” from the times I was in the hospital in the middle of the night. While we were waiting for those, she ordered every kind of test you can think of examining my thyroid, my ovaries, and my pancreas – ultrasounds, CT scans, blood work, specialized glucose tolerance tests, and a few weeks later I was called to go in.
After adding up the results of all the tests she determined that I did, in fact, have diabetes. But this was before there was much chatter about people being diagnosed as Type 1.5 and I was having a hard time wrapping my brain around the whole thing. She just told me that I was “in the middle” and that she’d never come across a patient at that point in their journey before – more often than not, these patients were insulin dependent before their PCP had referred them to her. She also told me that usually within 6 years patients became completely insulin dependent. Since then I’ve had a ticking clock in the back of my mind counting down til the time when the Byetta doesn’t do the trick anymore.
The more I read the stories of other PWDs, the more I realized that diabetes in general – especially diabetes when there’s other medical conditions to consider – is really one huge puzzle and that my story wasn’t as weird as I thought. I just couldn’t get my thoughts together to write about it.