Spice of the Unknown

“Well thanks for coming on this adventure with me today,” I said to my friend, without really thinking about it. We had planned to take a walk after class in the forest together and we accomplished that, but only because she stuck with me as I rode the waves of my blood sugar.

First as my post-lunch bg got up to 170 or so I stood by her at the bus stop, drowsy and dull. The bus was 11 minutes away so I suggested we walk down to the next stop or so, hoping that might bring me down a little. She pushed her bike alongside her and I tried to explain why I felt dizzy and why walking would help. Fifteen minutes later we got onto the bus and 45 minutes after that made it back to my house and my car, to the forest entrance, waited behind men in trucks doing something, and then onto the access road.

I loaded up my Ecuadorian fanny pack with glucose tabs and as we headed off into the woods I felt the muscles of my face and neck finally relax. Sometimes I hold tension when my blood sugar is high and I can’t exercise to bring it down but I also can’t take insulin because I’ll be moving soon. Since we had plans to walk together, I couldn’t just abandon my desires to walk in the forest and respond to high blood sugar by walking around campus in uncomfortable shoes to bring it down. I followed through. Sometimes I feel like following through is a rare event for me because blood sugar sidelines me. Or because I’m not feeling great I’ll decline plans with friends because I don’t want to drag them onto the rollercoaster with me.

We walked 2.5 miles in the splendid mid-October falling leaves, a little less luminescent here than in the mountains but still beautiful. Back at the parking lot I checked before driving and I was 67 mg/dl, so I suggested we wait while my bg came up. As I ate glucose tabs we talked about our classes. When I said, “I’ll check again, I think we can go now,” my friend admitted she had no idea what we were waiting on. People just don’t know! When you live so intimately with a condition you start to assume that it’s evident on your face or in your words, that people understand it like you do, but that is so rarely the case. I explained why before when my bg was high movement helped me feel better, and that when I am low I need to eat something. I explained why I would treat a mild low before driving vigorously with several glucose tabs whereas if I was just going back home I might eat one tab and then have a snack.

After I thanked her, back at my house, she thanked me for the education. I thought about the name of my (somewhat dormant) blog. Diabetes has a way of making everything an adventure because it always throws in that spice of unknown. You have to adapt to it constantly, get creative, think about solutions. You have to be willing to change plans, be thrown off course, and clamber back to your path. It’s like inviting that oddball friend on the road trip, the wild one who is always suggesting weird detours. How wrong my thinking was ten years ago when I was diagnosed: that life with this condition would be boring.

And maybe most importantly, letting my friend come along on the adventure of blood glucose with me and being vulnerable in that way created a deeper trust between us and gave to us both.

Ch-ch-ch-changes….

Pod changes that is.

First day of graduate school, pod alarms while I’m using someone else’s computer – sounds like I broke it but no, it’s just me. Going home to change it I am reminded (early on, so that’s good) that I’ve got to carry back-up (and maybe back-up for my back-up since this will be my third pod of the day). 3rd time is a charm!!

Getting Found in Lost Cove

Here’s a link to a recent article from Blue Ridge Outdoors online that I wrote after a backpacking trip with a bunch of friends in the Wilson’s Creek area of NC. It reminded me how much my friends care about my health and well-being and the way that Type 1 makes me think on my feet!

http://www.blueridgeoutdoors.com/go-outside/getting-found-in-lost-cove/

This is my friend Laura and I, super excited about life and the trail!

Ponies, pods, and Backpackin’ with Diabetes

I’m waking up dreaming of the trail and wishing that I was still out there in Grayson Highlands on the AT, trudging along with my loaded down pack and passing fields of wild ponies.

I want to talk in this blog post about packing the backpack with diabetes in mind because it’s a challenge on a physical and emotional level. Whenever I get ready for a backpacking trip, especially the first one of the season, I experience some level of dread at the thought of forgetting something vital. When I’m going through my mental and paper list I find myself playing through some of the ‘what if’ scenarios, that I might encounter if my pod alarmed, if my insulin vial broke or got too hot, if my pdm malfunctioned all together. To a large extent this sort of preventive troubleshooting is necessary, and it’s a little necessary, or has been for me, to spiral into the worst case scenario so that I’m literally prepared for it, because that is what T1 diabetes requires.

The problem for me is when that attitude carries over into the rest of my packing, and sometimes my life in general. I think the necessary preparedness of Type 1 makes it easier for me to keep this worst case scenario thinking, which often leaves me with a very heavy pack and a pretty stressed out mind, until I get about a mile down the trail and feel my whole body and being relax into the mountains.

On our trip this past weekend this moment came decisively after we had crested a small windswept knoll and entered a calm stretch of forest full of ferns and rhododendron, tulip poplar and beech trees. I was breathing heavier because my pack was so gigantic and on one inhale it felt as if I’d taken in the peace and simplicity around me. I exhaled out and came into the environment and felt my worries about the future and the stress I was holding onto from the past week fall away completely.

I did find that I could have left out a lot from my load. After all the necessary diabetes supplies and back-up supplies were in I didn’t have much time for finesse with the rest of my packing. Next time I will not throw in a whole pack of tortillas for one overnight trip in which I might eat 3, maybe 4 maximum. I won’t bring tupperware, but instead will use baggies for my celery and carrots. I won’t bring 5 oranges! Whoops. I wasn’t counting, I was just tossing things in.
I also probably didn’t need two water filtration systems on a trip with others who were bringing their own method too, but this is something I go back and fort on. I have really enjoyed using aqua mura because to me it is simple, I know it’s working, and it tastes…frankly I like the way it tastes which is almost imperceptible, but a little lemony. However I’m looking for any good water filtration recommendations and leaning towards a ‘Sawyer System’ that my friend recommended.

I plan on designing some methods and gear to help myself stay organized and cut weight on the trail, but I’m not there yet. Right now all I can think about is the next trip. One thing I won’t cut out is the tiny bottle of hot sauce I brought, because it easily pushed our food experience from good to great.
Wearing the pump was a really positive experience on the trail but only because I avoided disaster and changed a pod early the night before we set-off. I could see in the pod window that a little blood was pulling up and even though I was getting insulin because I was trending low, I decided to change it there on my wooden cot, versus in the woods. As soon as I removed the pod blood streamed from the infusion site and I knew I would have soon enough encountered a problem with poor absorption. My next placement seemed perfect, pod right below where my waist belt would fall, and it held firm the whole trip. I was also able to turn my basal rate way down and lessen the constant lows that I usually just eat my way through, drinking honey straight from a honey bear or eating clif shot bloks or glucose tab after glucose tab on the trail. I still ate constantly, but my mind was clear and my body felt strong most of the time.

I’m eager to hear any other T1’s experience’s hiking and backpacking, so please leave your tips and comments!

When Insurance and Supply Companies Get You Down

Strap on your skates and get ready for a ride round and round the insurance-supply company roller rink! It’s a place full of big ups and downs, of enthralling personal emergencies, of fantastic defeats that you have to pick yourself up from so you can try, try again, because next month, you’ll still have a chronic condition and you’ll still need those supplies, gosh darnit!

A couple weeks back I’d just walked in the door of my little sagging bungalow and was headed for the fridge to make myself a cheese plate and celebrate Friday afternoon on the porch. As I was taking the insulin for my appetizer, my pod suddenly alarmed, a long high pitched drone, that was clearly not going away. The pdm said “remove pod and call customer service.” I was very distressed to be interrupted on the way to cheese, but I called the number, because I had to. You can’t choose to do diabetes later. After a long conversation and being instructed to stick my pdm with a paper clip numerous times, it was determined that my pdm, still under warranty, would need to be replaced. The company rep was very helpful and friendly and the whole thing went pretty smoothly, considering the way it interrupted my vision of an afternoon. She asked me that thing that supply company and pump reps ask when you have diabetes and some part of their process or technology screws up, “Do you have a backup method of insulin delivery?” One time a customer service person went so far as to say to me, “I recommend that you use a backup method of insulin delivery.” Well I guess she did! Luckily I always have novolog and lantus in the fridge and plenty of syringes. The fact that anyone would present it like there was another answer besides “Of course I do!” that would work is laughable to me. But I started thinking, what if I was in the woods? On a plane? What if I had packed enough novolog and pods for any pod malfunction, but hadn’t considered that at a normal moment the whole system could crash?

It made me think too about kids with type 1 who wear systems like this, or even those who just use injections, who do not have a lot (and I mean a LOT) of parent support. The following week my saga continued. I called my pod supply company no less than 6 times, because over the course of the past three weeks I’d been waiting on pods that never arrived, and each time I spoke with someone they assured me something like, “We have to wait on approval from your doctor, they usually get back to us in two to three days.” I had to give them my endo’s number at that point, then call my doctor and confirm they received the request, then call the supply company back to notify them that the approval was in, and they still did not automatically request reauthorization from my insurance co. Every year, EVERY YEAR, my doctor and insurance company have to re-authorize that I do in fact still have Type 1 diabetes. Why would common sense and accepted medical knowledge not trump procedure here? If I am requesting pods to deliver insulin, obviously I need it. And type 1 diabetes, unless you’re in a swanky new clinical trial that I don’t know about, does not go away. We know that, or at least it’s very commonly accepted in the medical world, so can we please give those of us who live with these conditions a break and let them just manage their blood sugars and lives, instead of spend the majority of their self-care time on the phone trying to determine if their pods are on the way or if the approval has even yet been requested.

And that is all I better say about that, except that I am lucky enough to be able to take time off work to make these calls, have a cell phone with unlimited minutes, and have the awareness that you must be a strong self-advocate every step of the way. I can’t imagine what a parent would do if their child was just diagnosed with type 1 and they did not have this flexibility in their work schedule, they were trying to learn about the condition itself and navigate the slippery world of insurance policies and secure their child’s supplies each month. I don’t know how a parent of or someone with type 1 would do it if they only had a limited number of minutes on their phone or if they didn’t know that you have to have backup for your backup. Or if they didn’t have the support of family and friends with type 1 and without like I have been lucky enough to find.

Travel Pic of the Week

I want to start a little project called ‘Travel Pic of The Week.’ I plan to pick a picture at semi-random and then narrate the context around it. I have so many amazing pictures from travels in the U.S., Costa Rica, and Europe that I think this will be a nice way to bring life back to those memories. Thanks and Enjoy!

a deceptively tranquil path leading to the Cote Sauvage:

In 2011 I traveled to France to explore, meet my father’s family, and speak as much French as I could. My father flew over and spent the first two weeks of my three month trip with me. We started in Paris visiting his aunt, my great-aunt and then worked our way to the Loire Valley to visit cousins. We rented a car and drove from Paris up along the Cote Sauvage, which means ‘Wild Coast,’ staying at a couple of inns along the way, one that was right on the seashore. This was a path leading to a peaceful stretch of beach that one spilled out onto after stepping out of the sliding back door of our room. At the peculiar little inn where we stayed we dined on toast and preserves in the morning and played game after game of pool at night in the parlor. During the couple of days we spent there I roamed the coast, which is indeed fantastically wild and craggy, with waves beating against the rocks and shooting up foam and fisherman in long rubber overalls hauling writhing sea bass in on their lines.

A Matter of Perspective

I went to a yoga class this weekend at the gym/community center where I work as the coordinator of preventive health programs. The yoga teacher knew me as such, a coordinator of a program for people with diabetes, not as a person with diabetes. With Type 1, I was still under cover, even though my omnipod sticks out in my tight yoga pants and threatened to give me away.

After a few moments of opening meditation and one or two poses, she walked over to my mat and said, “Hi Katie, nice to see you here.” I was surprised she knew my name, but we had met before and we pass each other in the hallway: usually she walking zen-like to class and me in a half-run back and forth to the fax machine. She squatted down next to me as she spoke and asked me if there was anything going on with my body she should know about like past injuries, issues, or any concerns at all. I scanned my internal landscape silently, and then sort of shook my head and shrugged ‘Nope.’ Usually at a studio I will mention to the teacher that I have type 1 and they may see me eating glucose tablets or drinking juice in the middle of class, but at the time I felt pretty stable in my bg and had my tablets handy, so I just went with that everything was just fine. She looked at me as I shook my head no and began to shake her head yes. She replied almost before I had spoke, “Yeah, you’re a pretty healthy lady,” as if to acknowledge her asking was just a formality, that she could see my health in a force field around me. And I felt a wave of gratitude for this part of me, the healthy part, which is always there with me even when diabetes is throwing me for a loop. The part that exits simultaneously with the other parts that throw me into exhaustion, dehydration, and frustration. We are not just a sum of the whole, but we are who we are based on the perspectives we allow in. So I am remembering today that labeling me with a chronic disease is just medical pragmatism, not the only reality. Find what works for you.

On the Road with Diabetes

Lately I’ve been on the road a lot. Which is a way I love to be! I love the adventure of navigating a new place. I like to go at it without a GPS (which is good since I don’t own one) and ask for directions as many times as possible from as many different people as I can. This seems strange, I know, but it is a fabulous way to discover the hidden nooks of a place and to get a sense of the general friendliness and openness of a community.

When you ask a local for directions, you can often tell right away how they feel about that place. People will light up when describing a route to you through a town or countryside that they love. They will shake their heads and look down and make scoffing, grunting sounds, or else, like when I landed in the worst neighborhood in San Francisco dragging my big red suitcase, with no cash, they will make purse-lipped, “Mhmm,” sounds with a furrowed brow and tell you not to make eye contact and to just keep moving. That’s not my style, so I asked a cop for directions further down the road hoping he might offer to transport me in his squad car. He didn’t, he just made more, “Mhmm,” sounds of worry and confusion for me.

When I’m traveling half of my mind is engrossed in the outer landscape and the other half is engrossed in my inner physiological landscape. I simultaneously hate and appreciate this. As much as I try to tell myself beforehand, “I’m going to just not care what my blood sugar is on this trip,” I always still do! When I have high blood sugar and have an hour or two of a drive yet, I feel like frustration is swelling inside of my heart. Having high blood sugar already makes me feel like a caged animal, and having it while being in a car is like that feeling times two. I can’t even (quite literally) shake it off, by going for a walk, or jog, etc. And I’m always puzzled between the fine dance of ‘conservative’ bolusing, so that I don’t go low if I’m driving, and extra bolusing or increased basal for the more sedentary time of travel.

Diabetes management thrives on routine or else requires the operator (me) to become a lot more involved. Which is the opposite of what I want to do on vacation. I want to say to my friends, “I don’t care where we go to dinner, take me to your favorite place!” Or, “Yeah, cheesecake sounds great!” Sometimes, I have an impulse to do that thing called…relaxing, where your mind sort of goes blank and you stop strategizing for the best possible way to achieve balance and you just sort of…veg.

But instead I pack a rigorous cooler full of literal veggies and nut butters, snack foods of all kinds, instant coffee (can’t really attribute that to diabetes, but it helps), and try to picnic as much as possible. The picnic is key because usually a good spot for picnicking is also a good spot for walking, which is a really useful tool on car trips. Often I park far from my ultimate destination and play the ‘ask for directions’ game on the way to wherever I’m going, which usually helps me get a good walk in. But I think the best outcome for me on the road comes from that good cache of snacks that I can use to fill-up a little before and meal at a restaurant that might not have as much to offer in the way of non-spiking foods or to munch on in the morning before my companions wake up. I would recommend the noble avocado, as the perfect snack for morning, afternoon, or night, compatible with sweet and savory, filling, and rich in happy making omega-3’s. I have more to say on this topic, but for now I’ve got to move.

Recipes To Not Try

This was actually some really good purple soup that I made the other day…couldn’t really tell you how though.

Hello Dear Readers,

Sometimes living with type 1 diabetes means that you have to experiment with certain substitutions and switches in your diet in order to achieve better blood sugar control. Often I use romaine lettuce instead of tortillas, make ‘pasta’ out of raw zucchini, or I eat lentils instead of rice.

But sometimes adventurous substitutions can go too far.

I got onto pinterest so I could follow my officemate’s cooking interests. She is an amazing chef who cooks “Rainbow in My Tummy” style food for the kids who participate in the programs where we work and she also regularly tells me about the professional grade cakes, soups, and vegetable dishes she makes. I actually have many friends who are excellent chefs and who’ve managed the art of following recipes to such an extent that they can now improv successfully.

I don’t think I’m there yet.

On pinterest, people have boards full of ‘recipes to try.’ I would like to offer you what might be the first in a series of blog posts called:

Recipes To Not Try

I’m Sure It Will Be Good Soybean Hummus

Ingredients:

1 can soybeans (minus a few bites)
garlic powder (shake it)
chili powder (a shake)
olive oil (just whatever amt happens to splash into the container)
lime (a squeeze)
salt (some)

Step 1: Dump all that into a hand-blender approved container and blend on low or high, just whatever feels right at the time.

Step 2: Blend until viscous

Serves: not even your worst enemies

Because here is the thing with soybeans: even though at first, when blended up, you might be tempted to call this soy hummus ‘creamy’ the truth is that it’s slimey, and that even throwing it into the trash is a disturbing experience.

So tack this up onto you dispinterest board and don’t assume, like I am oft to do, that you can just ‘wing it’ yet again (or if you do, let me know so I can add it to my own virtual tackboard).

A Change-Up

So I’m pretty excited about this. A few days ago I wrote about my recent disgust with my own optimistic attitude about diabetes, even though that attitude is what has pulled me through over the past nine years. I’m happy to announce, I can feel it coming back! Largely because diabetes does teach me some strange and interesting things.

For the past few days I haven’t been sleeping well at all. I’ll feel tired, reading my book wrapped up in an afghan in a cozy chair, spits of snow coming down outside. Then I’ll lay down in my cozy bed, warm and tired. And then…

I’ll get this feeling like my bones are hollow and I’m a little bird on a windy branch and I could just blow away, and the feeling is sort of in my heart and mind too, like I’m a reed humming in the wind.

Being low around bedtime often feels to me like I’m vibrating slightly, but lately that feeling has extended to include a low-grade but constant mental agitation. Even when my blood sugar has been elevated, I’ve been edgier. The only and best way I can describe it at this point is a swirling feeling of being unsettled.

A couple of weeks ago I was craving more carbs and food in general at the same time that it felt like my blood sugar was frequently stuck. I wasn’t receptive to insulin like usual. I would hit 250 and stay there on and off for hours. I woke up one morning, mouth dry, feeling like I’d been on a long road trip with no water, and I could tell I hadn’t been getting the insulin I needed from my pod.

So I switched from my usual sight on my upper glute to my belly. I don’t really like having the pod on my belly because I’m more aware of it and it gets in the way of yoga, but immediately my insulin needs and the time it took for insulin to start working went down.

Unfortunately these benefits came at the same time as my sleep troubles. At first I thought I wasn’t sleeping well because the different site was less comfortable to me, but I sensed that there was something beyond that at work.

For two pod changes I kept the pod on my belly. For nearly a week I slept like a guard dog, waking up at every creak and rattle in our albeit pretty noisy house.

Then, suddenly it hit me. That swirling unsettledness was centered around my navel.

Yesterday I changed my pod back to its old favorite spot.

Last night I slept like a champ.

Now the good news is I’m back to better responsiveness to my insulin with the pod in that old spot. I suspect that area did need a break; maybe I had hit some scar tissue or my bun muscles of steel were bending the cannulas. Who knows, maybe I’ll have to eat some more of these truffles from the Chocolate Lounge where I’m writing this.

It’s snowy out today, but not icy, so we spent all morning building snowball players. The title of this post comes from the lady pitcher who’s about to throw a change-up. It’s a pretty weak pun, but she is very strong, so I wanted to put in a picture of her.

So I’m curious to know what other people’s experiences have been with how their blood sugars, emotions, and sleep patterns respond to varying pod or infusion sites. Any feedback or comments are welcome.