30 Years.

Yesterday I celebrated living with Type 1 Diabetes for 30 years. A milestone anniversary for a chronic disease may seem like an odd thing to celebrate. But, it’s a testament to the power of reframing to intentionally take time to celebrate that I’ve lived well for three decades with this disease, one that they said would be cured in 5 years back when I was diagnosed in 1993!

My family has grown accustomed to my “diabetes anniversaries” since I self-proclaim them every year. So, I received phone calls, flowers, and many “Happy Anniversary!” declarations from my loved ones!

I decided that 30 years should be set aside more specifically so we planned to be up at our family ranch for an entire day by the pool, reading, relaxing, and being together. Last week I said to Dennis, Sienna, and Mateo: “It may be presumptuous to assume my diabetes means anything to you… but for my anniversary can we just talk about my diabetes? I’m curious how it impacts you, how you feel about it, that kind of thing.” They all agreed to think about it. Bless them!

At dinner time, we started to talk about diabetes and Dennis jumped right in by saying he’s always been impressed with my attitude and ability to take care of my diabetes rather than to fight it. The kids similarly echoed that they feel like I manage it so well that sometimes they forget I’m even dealing with it. It sort of felt like I was fishing for compliments! But, they were sweet and sincere. Sienna said that she and Teo have only ever known having a mom with diabetes, so it’s just normal to them. Perspective.

When I try to put into words what 30 years of living with Type 1 Diabetes means to me, I struggle. It’s been a constant companion through so much of my life. I never doubted that I’d live a normal life, which may be partly because of the blind optimism that characterizes my outlook on life!

It certainly hasn’t been easy and managing diabetes has changed with the seasons of life. My teenage years involved a lot of highs and lows (both emotionally and blood sugar-wise!). I have memories of sitting down in the kitchen of my childhood home, eating excessively to correct a nighttime low in my late teens. Then in college, the biggest scare came in the summer after my freshman year when I experienced my one and only episode of diabetic ketoacidosis and was hospitalized with a Ph level “not compatible with life”. That was a wake-up call at age 19 that diabetes was serious and I had to pay much better attention.

Having healthy children after managing my blood sugar extremely tightly for at least a year is perhaps the accomplishment I’m most proud of. It brings tears to my eyes to remember the focus, devotion, and utter joy I felt during those seasons. It says a lot about my personality that I loved the rigor of logging my blood sugars and testing 12-15 times per day to achieve better than normal blood sugars during my pregnancies! My A1C in the middle of Sienna’s pregnancy was 5.0% which is lower than a non-diabetic! Oh, how I loved receiving those gold stars!

However, it wasn’t all unicorns and rainbows… when Mateo was born at 9 pounds, 1 ounce, he was considered a “big baby” and his blood sugar was low at birth. These are both common issues for babies of diabetics, which was reiterated to me over and over when he went to the NICU. The nurses and doctors continually referred to him as a “diabetic baby” which was like a dagger to my heart each time. I felt like I’d failed this time around, since Sienna didn’t deal with these complications. In the end, the hospital was being overly cautious in keeping him in the NICU for a week when he was strong and healthy. We like to tell Teo that, since he was so much bigger than the other babies in the NICU, it “looked like he ate the other babies!”.

A few years after Teo was born I took a break from wearing an insulin pump because I was tired of being tethered to it all the time. My inclination towards order and routine serves me well and I happen to not need very much insulin, so using multiple daily injections (MDI) works for me. One of the blessings of having diabetes in this day and age is the many options for managing blood sugar. I’ve liked the ability to change up my management to reinvigorate my focus and motivation.

About a year ago, I had a huge mental breakthrough with how to interpret the data from my Dexcom continuous glucose monitor (CGM). I’ve worn it consistently ever since and it really has helped me manage my blood sugar more easily. My family can attest that I still have moments when stubborn highs frustrate me and trigger feelings of failure, but they are few and far between.

Currently, I’m in the process of getting back on an insulin pump. The new technology involves integration with the CGM to provide a “closed loop” of sorts, which allows the pump to correct highs and prevent some lows by automatically giving a correction dose or reducing the basal rate based on the CGM data. I’m mostly looking for this to help with overnight highs that are more difficult to manage with injections. I’ll write more about this system as I transition to it, because I imagine it will trigger a lot of emotional challenges as I release “control” to the pump.

This milestone of 30 years of diabetes has passed and I woke up today to manage my diabetes again. It’s always there. My blood sugar always needs to be considered. There really is no day off from diabetes. But, for all the strife and struggle its brought to my life, it’s also encouraged me to each healthfully, exercise regularly, and generally prioritize my health. My feelings toward diabetes are complicated and really span the entire spectrum of emotions. There are times its a source of pride and accomplishment, times I hate it for all the hassle and feelings of failure it triggers, and many times when its just there, quietly running in the background, not causing any particular feelings.

Now I’m off to live my life, with diabetes just along for the ride.


Nothing in the way…

Being still is something I continue to struggle with, nearly ten years after starting a blog called “Be Still and Know” which is both ironic and a completely natural human experience. Lately, I’ve felt this lack of stillness in my need to distract myself from moments that felt uncomfortable. While I’ve grown a lot in recognizing when the desire to control my feelings has taken over, it turns out I’m creative in tricking myself into thinking I’m accepting my feelings when I’m actually not.

A couple weeks ago, while home in Humboldt, my sister Sarah gave me Ann Voskamp’s book Waymaker to read. I’ve been in a bit of a reading slump after a couple books (one for fun and one for school) that I didn’t enjoy at all. So, I embraced this bookish serendipity and started to read. Sometimes just the right book comes along at just the right time. Thank you, Jesus!

After marking several passages throughout the book, I came to these lines: “…Driven and motivated to always feel okay is not a steadying way to navigate your one life. If your only way to navigate your inner landscape is to manipulate, control, and dominate your outer landscape, you’ve lost the map to joy” (Waymaker, pg. 302).

Oh, this is so relatable! Previously in life, my attempts to control my outer landscape involved excessive planning, many rules around food and exercise, and generally avoiding anything that would upset me. In recent months, I’ve found myself turning addictively to an afternoon coffee, alcohol at night, bedtime snacking, and a compulsion to scroll social media. I somehow started watching cheerleading stunt and jump roping reels on a regular basis!

While I’d learned that planning, monitoring, and rule-making were red flags that I was controlling my emotions and needed to practice acceptance and surrender to my beloved Savior, these newer habits crept up on me slowly and insidiously. They were little, common activities that I could easily justify. However, in my heart of hearts, in those moments I became still enough to listen, I knew that these activities were all meant to make me feel “good” and/or repress feeling “bad”. They were control strategies, many of which (as a diabetic) had real consequences for my health.

Years ago I read a book called Women, Food, and God by Geneen Roth. Since many of the routines I was noticing surrounded food, I decided to pick it up again to see which passages I’d marked in my previous read. This one hit home:

Eventually, we get so tired of trying to fix ourselves that we stop. We see that we’ve never been able to make ourselves good. Never been able to accomplish ourselves into being someone else. And so we stop trying. We see there is no goal, no end place, no test to take. No one is keeping score. No one is watching us and deciding whether we are worthy enough to ascend. As one of my teachers once said: “You can’t be stuck if you’re not trying to get anywhere.” Eventually we see that it was the investment in brokenness, the constant effort to fix ourselves, that was the very thing that kept the wholeness at bay. If you think that your job is to fix what is broken, you keep finding more broken places to mend (pg. 72-73)

My attempts to fix myself are, again, somewhat more concealed than they used to be. Now, it seems that I’m trying to fix my emotional reaction to life by repressing my feelings and continuing to cope well, regardless of the hard moments I experience. On some level, I decided to keep marching on and handling everything well by not breaking down or letting the difficult feelings in. But, I needed to control my inner landscape through my outer landscape of distraction, stimulants, and/or numbing.

Being still is not enough, in and of itself. Learning to trust God in moments of struggle, anxiety, or fear is the most rewarding work. When I distract and/or numb, I am literally blocked from accessing the peace that trusting God delivers. Allowing myself to feel pain and discomfort is the path that leads to experiencing God’s love and provision. He’s is always God and always tenderly in-charge of my life. True peace and comfort comes when I rest in His goodness with nothing in the way to distract me.


Coping Strategies.

It’s been a very challenging year and I haven’t written much about it because the events are more my mom’s story to tell than mine. Also, I don’t want to leave the impression that my time spent caring for my mom this year was a burden. While it was hard, I also feel fulfilled to have walked many parts of this journey with my mom and sister.

As soon as school got out, the kids and I headed to Humboldt to spend time with family and care for my mom. This trip coincided with another hospitalization due to an electrolyte imbalance, but it also led to finding some important answers in her ongoing healing. We came home in late June and then I flew back up to Humboldt in early July to spend another week helping my mom, including taking her to her pre-op appointments before her surgery, which was just yesterday.

I’m so gratified to say, the surgery was a wonderful success and she’s on the road to recovery!

During these months of making many visits up north to nurse my mom, I found myself using coping strategies that weren’t very healthy. Drinking wine routinely, zoning out on social media, and after a couple very stressful days, eating several bowls of potato chips (with wine!) while watching TV. At the time, I joked about eating my emotions, which was certainly the case.

Now, I could be all perfectionistic about my habits and berate myself, but honestly that’s just a very human response to acute stress. But, now that I’m able to reflect on it, I see that there were many emotions that I didn’t let myself feel during this hard season. In many ways, I felt present in the moment, but I didn’t give myself space to feel the emotions of fear, anxiety, and overwhelm that were certainly happening.

Coping strategies involving food, alcohol, and distraction are numbing, in the short term. But, what I want to do with my emotions is be present to them, feel them, turn to God for support, and lean on my wonderful family and friends for connection. Repressing my feelings just cuts me off from authenticity and my deep need for God’s provision and care.

As we gear up for another trip to Humboldt in a week, I’m prayerful that I will be more present and in touch with my feelings, without the need to numb or distract myself. I’m not making any drastic rules about my eating and drinking habits, though the reforming perfectionist in me keeps trying to set them! Instead, I will ask God for his provision in being mindful about my behaviors so that I don’t turn them into coping strategies that don’t help in the long run.