No Longer Waiting

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GS drove the thirty-minute drive to my doctor’s appointment so that I could sidestep stressing about the freeway traffic.  Yet as I sat in the passenger seat, I could feel my anxiety build thinking about the impending appointment.  My neck tightened. My shoulders tightened.  I could feel subtle pressure in my head. That led to nausea.  When I get anxious or stressed I decide to take shallow breaths with no rhythm.  Good strategy, right?  I focused on remembering to breathe and GS rubbed my knee and maneuvered the freeway traffic.

One of the things I love about GS is that he has never asked me a litany of questions about diabetes or celiac disease. Diabetes and celiac disease are integrated into my lifestyle and therefore, something I prefer to talk about only on an as needed basis.   I appreciate that in moments of stress or anxiety with diabetes or celiac he asks one question, “Is there anything I can do to help?”

When I was first diagnosed, one of my biggest fears was that others would define me by these chronic conditions.  I didn’t want people to think of me as “Katie the diabetic” or even worse “Katie the diabetic with celiac”, I just wanted to be me.  Diabetes and celiac disease are only a small part of me.  Yet if I’m having a rough week or month managing either one or both of them, they start to feel like they do define me. This is what I’ve been feeling for several weeks.

 

For the last six weeks my blood glucose readings have been three to four times the target range.  It began when I decided that I was not comfortable with the gluten-free food offerings at the diabetes training I attended in June.  I left the training early. Although I felt empowered in taking care of my health, I was disappointed about missing out on an opportunity to experience bonding with a community of people with type 1 diabetes.  Little did I realize there was an unexpected twist about to unfold.

 

Since leaving the training I have accidentally ingested gluten twice.  Yes, you heard me right, twice.  By accident!  It’s ironic not only because I left the training to avoid the health risk, but also because I practice meticulous care and good communication in navigating my gluten-free lifestyle.  The first incident happened after kissing GS.  He had brushed his teeth and washed his face after drinking some home-brewed beer made by my brother-in-law.  We thought we were safe since he had taken precautions, but I knew I was in trouble when I could taste beer on his lips.

 

The second incident happened at a work function.  Everyone brought “gluten-free” food yet somehow I got really sick for five straight days after the barbeque and had four weeks of elevated blood sugars.  My guess is that the food was gluten-free but there was cross-contamination.  Maybe a cutting board was not completely clean or a salad dressing was made using a condiment that had remnants of breadcrumbs from a previously made sandwich.  Cross contamination for someone with celiac is much harder to avoid than gluten itself.  There are countless variables.

 

For the last two months I have been thinking I will wait to post on the blog when I am feeling better, when diabetes and celiac disease are back to feeling like a small part of me, not the definition of me.  I keep thinking of reasons to postpone writing.  I will wait until I have a fully functional replacement insulin pump.  I will wait until I have this summer head cold beat.  I will wait until my blood sugars stop swinging from 389 to 42. But, what good does waiting do?

 

As I pondered this question, I chose to revisit an article by Catherine Price titled, “Thinking About Diabetes With Every Bite”.  It was through her honesty in hating diabetes and wishing that she could take a vacation from it that I found myself not feeling alone in the ups and down with diabetes and the desire of wanting to get it right. For the last two days I keep repeating one of the closing sentences in her article as a mantra, “The best I can do in the meantime is to control my disease without allowing it to control me…” So here I am, no longer waiting.

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CatherineKatie DeckerMichelle SHeatherJeff Horacek Recent comment authors
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Catherine

Katie, 

I was traveling when I first saw your post and have been meaning to write you ever since to thank you for sharing your experiences and frustrations. I’m so happy to hear that the piece I wrote has been helpful — knowing that also makes *me* feel better in my own moments of frustration. Best of luck with everything — and keep writing, during your ups AND your downs! 

Marlin Barton

Thank you Heather and Jeff.  I have your interview with Kristin Neff bookmarked from Transforming Diabetes Radio to listen to this week!  Looking forward to being inspired from your show. 
 
Michelle, thank you for sharing and your words of encouragement.  It is nice to hear that others do the same thing when traveling.  I am going camping Saturday and was thinking this morning about the food plan.  Planning is key for us, isn’t it? 

Michelle S
Michelle S

as a type 1 diabetic living gluten free as well, i can totally relate to your frustration.  this coming weekend we are heading out of town to visit friends, and I will take a cooler of food with us!  i can hardly trust any person or restaurant to understand how I eat.  I have other food allergies and am vegan… i love the way i eat but of course it would be nice for it to be safe to eat out with others!  i hope your sugars settle down soon.  Be kind to yourself. 

Heather

Beautifully written as always :)   I love your honesty, and I’m so glad you are “no longer waiting” – I just read in “Self-Compassion” by Kristin Neff that suffering = pain x resistance. You are no longer waiting (resisting) and I hope you are feeling better! Your blogs always make me feel better!! :) Thank you for sharing, Katie…..

Jeff Horacek

Living courageously may not always control the blood sugar but it is good for the soul.  Thanks for an inspiring dose of honesty Katie.

Marlin Barton

Thank you Jess and Jen!

Jennifer Jacobs

What an honest post that we can all relate to — thanks for sharing. 

Jessica Apple

Katie, I’m sorry you’re been having such a hard time.  Thanks for sharing with us and I hope you are the road to a full recovery! 

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