Choices

On my first day of grad school, my pod alarmed in the middle of an orientation session and I had to rush home, still unsure if the bus I’d chosen was the right one to get me to my apartment. On the way, my iPhone 4 and I struggled with the spotty internet to email my advisor and let her know I wouldn’t be able to meet her – technical difficulties. That’s not really what I told her of course. I explained it all – because you can’t just explain a little bit of diabetes once you get going. It’s hard to just say “My blood sugar was low” or “My insulin pump malfunctioned.” I always feel like I sort of have to justify that statement with, “Oh and I have Type 1 diabetes. And I’m ok – I’ve just got to handle this.” The good-hearted people of the world want to know that you’re ok, which is touching. It can be really hard to give people who want to help and be there for you some reliable protocol to follow, because so much of diabetes is adapting to the moment. So much of it is being in-tune with your own body and responding in what might seem, to an outside audience, like a contradictory way from how you responded before. Sometimes I eat cake, sometimes I don’t. That doesn’t mean that in one situation I’m thinking about diabetes and in the other I’m not. It’s always there, presenting choices or at least weighing in on them.

This post is meandering because my thoughts are meandering right now. If there could be a central theme here, it’s choices and how they fit into our otherwise unpredictable lives. Diabetes reminds me that I make many choices in the day, from how I treat my body to how I communicate my identity, positionality and needs to others. It also reminds me that no matter how fixated we become on one choice or path or reality, our pod could always alarm right in the middle of it and we’d have to respond. This is another diabetes metaphor, but please don’t let that prohibit you from translating it to your own life if you are a person without diabetes (or not, maybe you don’t like metaphors). I’m just grappling with this – the contradiction between writing and reading our lives, both of which (I’m gently arguing), are quite necessary.

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.

Diabetic Backpacking Pack List

October 2011

SUPPLIES
Take an Original + a Back-up that you store somewhere different in your pack or in your partner’s
Glucagon kit (know how to use it and teach your hiking partners)
Meter + xtra batteries
Test Strips
Pen Needles (double what you’ll need)
Syringes (as many as you’d need if your pens malfunction)
2 forms of each insulin you use
Example: Novonordisk insulin pen
Novolog vial
Lantus Flexpen
Lantus Vials
What if your vials break! What if your pen breaks? Do you have backup? Do you have enough of a method of delivery (pen needles/syringes) to use just one form for your whole trip?
Hand Sanitizer
Hand Wipes
Lancets
Lancet Device
PELICAN CASE!So useful for all water susceptible devices and supplies. I keep my meter, test strips, a few pen needles, and an insulin pen of each type in my pelican case along with some hand wipes. One kit for all your diabetic needs during a break.
Frio Packs!Another wonderful invention that is especially useful on the trail. Frio packs have an inner layer of dry crystals that retain moisture and keep supplies cool. The packs can be re-wet in a cold mountain stream when they begin to warm up and dry out.

FOOD!

Essential food supplies will cover all of your carbohydrate needs if you are low. In addition you will need power food that you can snack on and enjoy that won’t be pure carbohydrate. Here are some tips:
Bring a lightweight mug and a spoon!
Straight-up carbs:
* A full plastic tube of honey – I take 12 oz. and have made it through half of this on just a one night trip. Be over prepared.
*granola bars
*dried fruit
*crackers*Fruitabu organic fruit roll-ups (taste good, no added sugar, organic fruit!)Real Food food:Breakfast Example:*Organic instant oatmeal packets (3 for two people) – add hot water – add freshly picked mountain blueberries – add walnut pieces
+ Coffee! = hot and delicious and slow to release carbohydrates
Lunch Example:
*Low-Carb spinach tortillas – I like “OLE Xtreme Wellness
+ powdered hummus (fantastic foods) just add water (the oil is superfluous)
+ fresh basil leaves+ Shelton’s Turkey Jerky
Note:  chew well, turkey jerky is not your usual sandwich meat.
Follow with one low-carb whole wheat tortilla spread with NUTELLA, sprinkled with cranberries and walnut pieces
Dinner Time!:
Darn’ Good Chili from Bear Creek or Bear Mountain, something along those lines
(just add hot water, stir and simmer
+ Dr. Kracker crackers in pumpkin seed cheddar flavor as edible spoons
* throw in a can of veggies, fresh herbs, or eat with carrot sticks for some fiber and nutrients
* munch on jerky for protein, or just enjoy plant protein from the beans

On one or two night trips simply rearranging a few ingredients has proved delicious and different enough to keep us pretty happy.

Miscellaneous Considerations:

*Bring a phone but keep it turned off so that you can check the time but not risk receiving a call if you hit an area with service.  What a bummer to hear a phone ring in the woods.
*Coffee
*Warm clothes, especially rain gear should always be in your pack.  The first trip of the summer we did was in June and by afternoon we were soaked and freezing despite leaving the city on an 85 degree day.
*Extra contacts and your glasses if you require them
*A headlamp! + xtra batteries
*nutella
*Water bottles (@ least two nalgenes each)
*Water filtration system (We carry a pump and laser purifier) + backup (either iodine tablets or xtra method)
*a Map (and know how to read it)
*Flame Orange Vest (if you’re going in hunting season)
*a lighter and matches
*coffee
*Sock Liners (no more blisters protect those feet!)
*bandaids + first-aid kit, benadryl, neosporin, alcohol wipes, etc.)
*biodegradable soap for poison ivy contact, dirty hands, etc
*t.p. and trowel
*plastic bags
*nutella
*Swiss Army Knife
*Camera!
*and all those other backpacking things you can find out about online or in an REI catalogue or from friends who go, like a sleeping bag, etc.
 – This is by no means a comprehensive list, it is just the things I’ve found particularly helpful/essential for me on the trail. I would say to make a written list of your diabetic supplies and pack that in advance, ensuring you have functioning supplies and backup.  Go over your list and go through a typical day in your head to make sure you don’t leave any supplies out.  Teach your partner/s about diabetes and your routine, as well as what changes to look for in your behavior that would indicate low or high blood sugar.  Teach them how to use a glucagon kit.  You should have a kit and your partner should have one in their pack.  Honey is a particularly valuable carb because it can be squeezed directly in your mouth if you encounter a severe low without the risk of choking.  Tell your partner/partners that if you are coming up from a barely conscious or unconscious low, to roll you on your side to avoid choking risk because vomiting is likely.  These things do not make for a very sexy talk, but the more you and your partners know the more you can enjoy your trip and not worry about your health.