Missing in Action
Hi there…yes, I know that I’ve been MIA here for a while now. But honestly, every time I sit down to share, I get frustrated, overwhelmed and well, sometimes, just…stuck. Writers block? Hmmm. Not really. So much is happening so fast and sometimes, I just can’t keep up. Sort of like my Type 1 diabetes.
29 Years of Type 1 Diabetes
How do I start….? First of all, the Type 1 thing is doing as good as can be expected. I’m coming up on 29 years of managing this irreverent little punk. As per usual, it’s a day to day, moment to moment reality that has already been written about countless times by myself and just about, well, everyone who writes about Type 1 diabetes. We’re all in the same boat, those of us with insubordinate pancreases. We have our challenging days and those less challenging days. We do the best we can and we acknowledge that our best will change all the time because our circumstances change all the time. We continue to fight with our insurances companies, and sometimes our healthcare team. We get our eyes checked and our bloodwork done and well, whatever it takes.
Something is Different
This past year, I’ve been busier than ever, advocating ferociously for continuous glucose monitoring (CGM) coverage, Type 1 screening, Type 1 awareness, diabetes legislative reform, healthcare coverage for my tribe and funding for research. I’ve been on planes, talked for hours in person, in cars and on phones, pounded the pavement in DC and testified in the State Senate. And while doing all of this, minute by minute, I’m taking care of this little “monster” called Type 1 diabetes, even though some days, I feel like I’m walking around in a fog of overwhelmed self-responsibility. And this is normal, I know, to feel this way from time to time. I get that. But something is different now. Something has shifted. I used to chalk it up to the occasional diabetes burnout that all of us go through. So, what’s different?
My Heart is Broken
Ask anyone who knows me personally and they will tell you that I’m very positive, upbeat and a bit annoyingly perky from time to time. And that is truly my personality. Even though I may be feisty, raw and sassy, I’m actually the “glass half full” kind of gal. But if I’m honest here, in all my optimism and passionate energy, I’m flat out sad and exhausted. Not just about having Type 1, but about holding my breath, over and over for the past year, every time there’s a vote on whether I can buy health insurance. I’m wearied from having to explain the difference between Type 1 and Type 2. I’m tired of explaining AGAIN that Type 1 wasn’t caused from too much sugar. I’m drained from not trusting my doctors to help me because, frankly, many times, I don’t trust them. I feel guilty about being a financial burden on my family. Ever ask for CGM sensors for your birthday? I have. Oh, and yes… I’m jaded and skeptical from waiting “5 more years” for the cure. (Either cure it already or stop saying that. It’s cruel.)
I Keep Going
Yet, I keep at it. I keep going and going…poking my fingers, changing infusion sites, listening for the beeps from my continuous glucose monitor, counting carbs, calculating the amount of insulin that is still floating around in my body, balancing exercise and stress and my worry about health insurance and co-pays. I live by numbers, beeps and alarms, all while trying my best to balance the ever-changing dynamic that is my body.
I do what I do not only for myself but also for others in the same situation. I’m fueled by a deep desire to create a momentum of awareness of Type 1 diabetes, healthcare coverage and ultimately, a cure. Sometimes, I feel like I’m on autopilot, going through the motions. Other times, I’m fierce and passionate in my messaging. It all works together I suppose. It’s the advocate life with Type 1 diabetes.