By far the most positive thing that has come out of getting this stupid chronic illness is meeting incredible people. Who knew there were so many wonderful kindred spirits out there, before I began connecting with others who struggle all day every day with carb counts and insulin dosing calcs and potentially dangerous blood sugar lows?
First off, let me say that Catherine wrote a post about living with Type 1 diabetes in the New York Times Well blog recently, “Thinking About Diabetes With Every Bite.” Reading this nearly knocked me out. It’s simply one of the best D-testimonials ever presented to the public, to my mind. Catherine, you speak from my soul here! (Note: I’ve bookmarked the link to send to family and friends, in the event that they really wish to understand my existence.)
Catherine’s also a regular contributor to the newest smart and sassy online diabetes publication, A Sweet Life.
Talk about understanding my existence, it took all of 2.5 minutes for me to feel an immediate connection with Catherine. We met on a cold afternoon in a funky little San Francisco café that turned out to be in a sketchy neighborhood (I passed about 7 homeless people on my three-block walk over there). Catherine quickly surveyed the cafe’s chalkboard menu for something “safe” to order. That turned out to be “a cup of decaf, please.” But this being the funky little San Francisco café it was, she was served up an elegant but teeny-tiny cup of decaf espresso. Meanwhile, I was pushing buttons to cover a creamy latté (post workout indulgence!)
We talked for an hour and a half nonstop, about diagnosis (she was 22 and attending Yale at the time) and clinical studies (she was in an early T-cell intervention study with Kevan Herold at Yale) and about the quagmire of medical bills that comes with diabetes (last year she exceeded her $6,000 annual deductible by the month of April). But mostly we talked about her use of the Abbott Navigator and Symlin injections.
I was humbled, actually, knowing the amount of work that goes into just living with an insulin pump — especially when you’re fairly athletic — let alone fussing with CGM sensors and extra injections before every meal. How does she fare with all that gear?
Catherine smiled at me. Again. Some more. She’s a very “up” person. The kind you just want to hug. And then she said, about Symlin:
“I love it! I feel happy every time I give myself a shot… It’s amazing because I can eat and my blood sugar just goes up gradually — whereas before it would shoot up into the stratosphere quickly after every meal.”
I was in turn amazed by Catherine’s enthusiasm, knowing of other Sylmin users’ struggles with nausea and severe lows.
Apparently for Catherine, the nausea was very short-lived (“just a couple of weeks“), and while the lows are a concern, she’s learned to carefully manage them. “When you treat lows, you have to keep the sugar in your mouth so it absorbs through your mucous membranes rather than sending it to your stomach (which isn’t emptying so quickly). Sometimes I put honey in my mouth, but a lot of the time it’s skittles or some other solid sugar source that I suck on slowly to try to get it to seep through my cheeks…. I’ve just worked out a system where I wait for a while before taking insulin and usually do it as a dual wave so that I’m not hit with a huge bolus all at once. I think that’s where you get into the most problems — when you take insulin in a lump too quickly after you eat, so it starts working before your stomach starts emptying,” she explained.
Gotcha. That still sounds awfully fussy to me. Sylmin lows ‘suck’ in more ways than one, I guess.
Meanwhile, Catherine’s been wearing the Navigator CGM system for a full year. She finds it “very useful” in alerting her to impending highs and lows, she says.
“And you haven’t been woken up again and again by unnecessary alarms all night? That was a big factor in turning me off,” I admitted.
Apparently, Catherine’s been able to disable the alarm that’s most bothersome most of the time. “But there have been nights where I have had to stuff the thing under a large cushion on the window seat so it wouldn’t wake us up,” she says.
And the adhesive (my other big CGM bug) is an issue, she adds. It just won’t stay stuck to her skin, especially when she she’s working out.
“I’ve learned so many things about sweat… I just keep trying to put the sensor on spots where I sweat less, so it won’t come unstuck, as it frequently does,” Catherine says.
So there’s that and, being a pumper (Catherine uses a Minimed) there’s always the inconvenience of double-infusion sites, especially bothersome when you’re trying to partake in sports.
“The rock climbing gym is like a diabetic disaster. I disconnect my pump, but I’ve still got that sensitive infusion site, and then the CGM sensor bumping into that big harness, and sensor keeps coming unstuck and all. Sometimes I just think, could this get any less convenient?”
I’m so with you, Catherine! Which is why I personally am not using either a CGM system or Symlin at the moment, both great tools that could surely improve my BG control. But life with diabetes is always a trade-off between striving for optimal control and striving to have a life.
I started kvetching about all the stuff I have to do and organize and carry around for my 3 children, on top of all the diabetes stuff in my life, and how I’d simply opted to simplify as much as possible. Catherine nodded empathetically. And it was so wonderful to know that this person, who I’d met less than an hour ago, gets me in ways that people without this illness will never, ever understand.
Thank you for that, Catherine, and thank you to all the Kindred Spirits I’ve had the good fortune to discover since my diagnosis. You are greatly appreciated, in ways that only YOU understand