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.