Dear Dr. Edelman and Staff,
I was diagnosed with Ulcerative Colitis in my early 20’s and struggled for what seemed like an eternity (3 1/2 years) trying to maintain it. During that time, I was on extremely high doses of steroids that I was never able to titrate off of. After no success, I resorted to surgery and had a total colectomy in 2003. Felt great! No problems. Surgery was a success in my eyes. In 2007, my life turned upside down. I was diagnosed with type 1 after a visit to my PCP for a recurrent infection. Ok, no problem. Being the optimist I am, I said “I got this!” No big deal. I can handle this. I went to my endo appointments every 3-6 months as directed. I followed their recommendations and I “dealt” with diabetes. Over the years, I thought I was doing great because my A1c (6.2, 6.1, 6.3) was great. However, I was misguided by that number. That number was driven by frequent lows, followed by skyrocketing highs. So much that I’ve lost the ability to feel my lows, even in the 30’s and 40’s. But I thought this was “just diabetes”. This is how it was for everyone with T1D.
Since that time, I’ve become a different person. I don’t laugh as much, I hate food (it’s just a necessity), I don’t smile as often as I used to and I would most likely be diagnosed with depression if I went to my doctor. I’ve become so obsessed with keeping tight control that I’ve completely lost control of my diabetes. I’ve become such a control freak that it’s spilled into other areas of my life and I feel I shouldn’t rely on anyone else to help because it’s my disease. I can’t burden them with it.
I recently had a low that caused my co-worker to call a Code Blue (luckily I work in a hospital). He said, “The lights were on but no one was home.” I decided that was it. I couldn’t deal with diabetes on my own anymore. I needed help. And about the same time I learned about Loop. Long story longer, I started Loop with Omnipod in June.
Fast forward to this past weekend. I registered for the TCOYD ONE Conference and attended by myself. I’m just going to copy what I posted on Instagram about this past weekend that made my mom and daughter say, “We haven’t seen you laugh like that in a long time. You look so happy!” I’m the cyborg in the photo with the Omnipod/Dexcom on my arm.
Thank you to this group of #diabeauty rock stars. I came to this conference by myself. Nervous. Shy. Uncertain. Intimidated. Scared. Feeling burnt out. Feeling alone. And ended up laughing until my sides hurt. Dancing until I couldn’t dance any more and just plain having fun. You can’t know the burden that had been lifted from their kindness and the lift it gave my tired spirit. Y’all gave me something I knew I was missing but didn’t know how important it was to have. Thank you @tcoyd for giving me the opportunity for human, face to face interaction with others who are just like me -#pancreaticallychallenged. I see now how important it is to find #diabuddies who “get me”. My heart is happy.
From the bottom of this pancreatically challenged, cyborg’s heart I THANK EACH AND EVERY ONE OF YOU FOR THIS PAST WEEKEND and the renewed HOPE you’ve given back to me. You all have truly lifted my spirits.