My one major message as an advocate for Type One Diabetes is that it is a personal disease. None of us are similar. None of us have the same struggles day in and day out, none of us can treat the struggles we encounter the same way.
I just want a little recognition outside of the diabetes world (and uh...sometimes inside too) that while this chronic illness comes with similar symptoms it is not a similar disease when we go from individual to individual.
I wanted to make that clear before I go on with this post because it's a doozy, and what I do (and expect from me) is probably completely different than what you, your mom, your kids, your sister, your cat does and that's ok. It talks about balancing mental health, a personal life and diabetes all while maintaining a cool outer shell.
I don't judge anyone for any of their own choices when it comes to their diabetes, and I wouldn't ever judge anyone because of a number they chose (or choose not) to share.
Ok. We clear on that? Good? Good.
I met my new/old doctor today. I had my lady check up, my 3 month blood work, and a fascinating conversation with her. She is truly one of the most fabulous people I have ever met and if anyone is meant to be a caregiver and doctor it's her.
I sat in the room waiting nervously with my list of questions/medications in hand. She breezed in with her cool red haired bob bouncing and apologizing profusely as she hadn't had her coffee yet and she was running behind (um it was still 3 minutes before my appt. time.)
She looked me over thoughtfully and said "I don't remember your face, but don't be offended, talk to me like we're old friends and it will come back to me. Tell me your story."
So I explained that I had moved around and bounced from family doc to family doc over the past 7 years since I have seen her. She nodded and asked me questions here and there about my life. Spouse, interests, job, family history etc. Then we got to the good stuff. She looked at my blood work and she said "well, everything is great." and rhymed off cholesterol, etc. And she got to the A1C of 6.1 as soon as she said it I looked at the paper for confirmation and I whooped right there. A deep sigh of relief post whoop made me realize...I hadn't told her I was Type One. She didn't know (or remember). I looked at her and said "That's pretty good for 23 years on Insulin, yeah?" And she smiled big and said "well you didn't tell me you had diabetes, and judging by this I wouldn't have really known."
We chatted more about the pump, the Dexcom, and other treatments. I explained my woes with my endo, and she referred me immediately to her friend who is an endo and said she will see me in 3 months.
I respect people who don't post their A1Cs. I respect people who do. It's a totally personal choice and how you get to those numbers is your personal adventure. I blog about mine because it helps motivate me.
So I posted my results on my Facebook. Most of my Facebook people are friends or people with diabetes in their lives.
One friend (a fabulous d-mom, you probably know her as Lea) asked me: "Is it worth it?"
My answer? Yes and no.
It's hard work. And it's not even to say that people who have higher A1C's are not putting in just as much, possibly more (though from how I feel...maybe not) work into their treatments and self-care. It's just this whole taking care of yourself thing while living with a chronic illness is hard. It's hard mentally, physically, emotionally. It's hard on your job, your relationships. It's hard on your wallet.
What have I changed? How did it happen for me? Over the past 1.5 years here are the changes I have made, all thanks to members of the diabetes online community. (I have not been to an Endo or CDE since I started my new pump in April 2012....so uh don't do what I did. Get a doctor's advice.)
-I don't eat if my blood sugar is above 8.0 (144) anymore.
-I cut my food intake in mornings in half (no more nice big brunches or breakfasts.).
-I noticed foods that set my sugars off and have stopped consuming them.
-I check my blood sugar ~8-10x a day.
-I am extremely aggressive with corrections, temp basals etc.
-I bolus 1hr before breakfast no matter what my blood sugar is. AND I eat the exact same breakfast every single day.
-I started wearing a CGM, and adjusting my basal rates aggressively to match the patterns. Almost Obsessively (I currently have 9 basal settings which work GREAT.)
-I read and took heed to the book Pumping Insulin (changed my whole outlook!)
I have made some sacrifices in my personal life too.
-I don't get to sample as many yummy cocktails as I would like & beers are getting fewer
-My coffee is getting darker (as in not using as much creamer, despite my love for it)
-My mornings are getting earlier so I can get ahead of the hormonal spike
-My eating at restaurants is well planned, and I try to avoid the fried stuff unless I am 100% emotionally prepared for the BG spike BEFORE ordering.
-Driving anywhere takes longer because I will not put the keys in the ignition unless I have checked in range in the past 30-40 mins.
-My social media is annoyingly filled with information about diabetes, mostly on a selfish basis as it motivates me. I think this has caused some of my friends to distance themselves from me. Really, I do. And that hurts.
So is it worth it?
Doctors, family, friends, researchers tell me a resounding YES. Some days are worth all of it. Every grape-counting, pasta-measuring, cheese and olives instead of ice cream for dessert eating moment.
Some days I curse it and just don't want to care and it's a resounding NO. For a day, an hour...even for a minute I don't want diabetes in my mind. But I don't have that option. We don't have that option. So we do what we can when we can and that is how it is.