Worth the insulin

 

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Here are a few Bolivian specialties that I declare are worth the extra insulin. Salteñas, various baked and fried goods at street markets such as this one that appeared to be purely cookies, and small batch Greek yogurt w blackberry beet sauce at ‘Frozz’ icecream and yogurt shop in Sucre.

Glucolift, checklists, and a lot of luck

My Glucolift is packed, I’m ready to go…

glucolift
I love Glucolift. It’s the only glucose tab that I don’t dread eating. I buy it on Amazon. Vegan, gluten free, no artificial flavors or colors.

I’ve been marking through checklist after checklist for the last two weeks. The nice man who works at CVS doesn’t need to ask for my card number anymore, he just remembers it.

Today I went to the pharmacy twice, yesterday once, and the day before, yep, at least once.

The last time I traveled out of the country was in 2011. At that time I was preparing for a three month long trip. I quit my job, packed up a huge suitcase and my backpacking pack and filled a lunch box sized cooler full of insulin. This time it’s just a three week trip, and yet I feel like my wheels are spinning as I try to get organized with all these medical supplies.

It’s my first trip out of the country since getting the Omnipod insulin pump. I wore it when I flew to San Antonio for a business trip and to San Francisco to visit two great friends, but never on an overseas adventure and never to a place where I’m not sure what obtaining supplies will be like.

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These are some of the diabetes-related supplies I have to carry, and yes, before you say anything, chocolate is a necessity. In the past, I’ve felt so burdened by all of this ‘stuff,’ but in this moment, embarking on this project, I feel so exceptionally lucky.

I am so lucky to be able to afford and obtain these supplies. I am so lucky that this technology is available in the U.S. and that my insurance covers at least a portion of it. And I’m lucky to have so many amazing friends and family supporting me.

When I was diagnosed with T1D 10.5 years ago, a doctor looked at me in my hospital bed and said, “You know, it could always be worse.” At the time, that was not the wisdom I was hoping to hear (actually I was hoping for, “most cases of diabetes clear up in two to three weeks…”). Yet, nearly a decade later I realize how right those words were, although maybe not in the way that doctor intended. I am so very lucky to have been born in this time, with these resources, and this support network, and have such a good starting point for managing diabetes. Not everyone is.

One more thing this time: if you enjoy my blog please go ahead and become an official follower (see the little button bottom right of the screen). It’d be a big help to me and I’d really appreciate it! You can always unfollow or change your email settings if you feel like you’re getting too many notifications from me, but I rarely write more than once a week.

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.

A Change-Up

So I’m pretty excited about this. A few days ago I wrote about my recphoto 3(4)ent 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.photo 1(9)

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.

oh mysterious blood sugar…

Oh mysterious high blood sugar and insulin resistance, you come without warning and occupy my space.

Perhaps you travelled with a sunburn that snuck onto my back where my arm couldn’t reach

or with the sleeplessness of this warmer weather, time playing outside and into the night.

Maybe you’re here to tell me the fridge is too cold, that my insulin froze

or that when I was sick and reverted to potatoes and rice for the first time in 8 years, I finally built back up some of that stored sugar that low-carbers lack (can that even be?)

You make me speculate, you furrow my brow.  Perhaps you are simply a cycle – I heard last weekend,

“Worry is a misuse of the imagination.”  Instead of worrying that you will be high for another day, I will imagine it was all these things that have now been beautifully resolved, and the budding springtime with its flowers and sunshine will increase my sensitivity to all things, insulin included.

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Ok?

 

the path less traveled

There are two ways to talk about this “disease.”  I can say to myself:

“This is so unfair!  I hate having to prick my finger, match my insulin to everything I eat, and think about what supplies I need to have with me everywhere I go and for everything I do!”

or I can say:

“I’m so lucky!  I get the chance to live and all I have to do is monitor my blood sugar, think about what I put in my body, and show up prepared!”

today I choose option #2, thanks to a little help from my friends