A misty summer day in Austria

…that looks not very different from this misty winter day in North Carolina. Except for the cows, and the ice cold glacial stream and the rugged evergreen peaks.

In this mountain town in Austria the water was piped directly from the source, glacial springs high in the mountains, and poured out of copper pipes into intricately carved basins. Here in NC I can turn on my faucet and fill up my water bottle and not worry about bacteria and contamination.

Managing Type 1 diabetes or any chronic condition in an area where you don’t have access to clean water would be terrifying! Today I am so grateful for water.

Can’t stop thinking about…

Costa Rica right now. It’s cold here in North Carolina! Here are some pics now and then, side by side. It’s crazy how much our climate shapes us. Right now I’m going to the gym or bundling up for walks, down there I was rambling outside and running by the surf.

Diabetes was wild in Costa Rica. It was the first time I’d ever introduced myself to new people as a person with diabetes. Before that it was all about telling people who knew me that I’d been diagnosed. In some ways, it was sort of a relief to not have to explain how I got sick, stayed sick, and was finally diagnosed. To not have to fight people’s expectations of how I would be based on how they knew me before.

It’s nice to have better words to explain diabetes now. It’s taken me ten years – there have been a lot of hard emotions to sort through when it comes to how much to share, how much to ask for help. Being vulnerable with friends though, and there is a lot of interesting research right now about vulnerability that seems to confirm this, in my experience has blessed me with deeper relationships and more trust.

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.

Asheville: City, Mountains and Sky

My writing and experience is heavily influenced by managing Type 1 diabetes, which I’ve been doing for the past 8 years.  My experiences, “Living fully with T1D in mind” will be the major current of this blog.  Having diabetes has changed my life in innumerable ways, and through meditating and processing and writing, I strive to capitalize on the joy and teachings that have come into my life through my journey with a chronic condition.  We all have some sort of chronic state we battle (or dance) with, even if it’s the force of our habits and history.  For me, joy and openness have been a product of acceptance and adaptability.  

WordPress is a new space for me.  I’ve previously been blogging at: http://sweetadventurer.tumblr.com/ and thought that I might recopy everything here.  Instead of doing that I’m just going to start fresh at this point, but reblog my past entries from time to time because our past informs our present! 

Asheville City, Mountains, and Sky

My favorite view from a downtown spot that never disappoints