Components of Healing and Wellness

Before my diagnosis back in 2005, I had been sick for months. I knew nothing about diabetes (oh how much has changed!). In those months, I’d told myself that even though I could barely get out of bed, was losing weight rapidly, and once passed out in the library for hours, I was probably fine. Turns out, I was not. By the time I was diagnosed with type 1 diabetes (T1D), I was in diabetic ketoacidosis, which means that my body had started to burn muscle and my blood had become overly acidic due to a buildup of ketones. As a person with T1D, I am at risk of this life-threatening condition throughout the course of my life if I experience any interruption to my insulin, including if being sick means that I cannot take insulin as usual.

I preface with this because I want you to know that seeking help is not something that comes naturally to me – at least not until things get really bad. Which is why I was surprised when, overcome with intense dizziness and nausea, I found myself on all fours in the back of a plane yelling “Help!”

It was about a year ago when my friend (who is also my colleague), and I were on a flight back from Germany where we had participated in a conference talking about the need for equity when it comes to closed-loop insulin delivery technology. If that’s confusing, I’ll explain, so stick with me. We were approaching the last leg of our journey, headed back to London to spend one night in the airport hotel before I flew back to the States, and she returned to her town.

It could have been dinner the night before, it could have been our midday snack, it could have been travel stress or any number of things – the point is, I got violently ill on the plane. I will not go into details of that except to say, when I cannot keep food down, I run a greater risk of becoming dangerously dehydrated and going into DKA. If I cannot eat/absorb food, taking insulin becomes dangerous because of the risk of low blood sugar, but if I don’t get enough insulin, my risk of DKA is greatly increased. It can be a dangerous loop. That is why, at around 11 pm, when my friend and I had finally checked into our airport hotel, she suggested we consider a trip to the ER. This brings me to what I have identified as the three key components to my personal sick day wellness strategy with T1D.

1. Having a detailed plan

When I was first diagnosed and in the few years after, I prepared extensively for travel. As I became more comfortable with diabetes management over the years, I let some of my preparation slide. While experiencing less anxiety over what could go wrong has been really great, preparing for what could go wrong is still essential for me, which I was reminded of on this trip. I was also reminded that the time to prepare is when I am well. Luckily, I had support, but if I had been traveling solo, as I have in the past, I could have ended up in really bad shape.

2. Willingness to accept help

I admit that I was resistant to the idea of going to the ER. For the first18 years of my life I did not have T1D and I dealt with sickness differently. But my friend has weathered more sick days with T1D than I, and I really trust her. Once she finally convinced me, she called an Uber and set the wheels in motion. When we climbed in, she told the driver where we needed to go, she let the front desk know that we were checking out and would not return. I simply languished beside her as she orchestrated my safe passage to the ER. It was also she who sat next to me in the ER for 6 – 8 hours and reminded me to check my ketones, check my blood sugar, and generally kept an eye on me.

3. Available help from someone understands diabetes and can be your advocate

The other thing about having help from this friend was that she really gets diabetes. She knew what to say to the staff at the ER to get them to take my concerns seriously. She knew that my rising ketone levels were a problem. She minimized nothing and was an advocate for me when I could not be. I have thought about what I might do if I was alone in this situation and identified a few things I learned from her that I will carry forward, specifically knowing where the nearest ER is anywhere I go, and having an up-to-date sick day note that specifies what I need if I am sick. Even though I might know no longer need to reference these as written guidelines, it’s helpful to have them at the ready for medical providers or others I might be traveling with. Before I go on my next trip, I will do preparatory work ahead of time, when I’m well, in order to be that stable friend for myself if I need to be. *This post’s featured image is one of us a few hours before I became ill.

4. Supportive technology or access to supplies

This one I want to spend a little bit more time on. For the past year, I have used the Omnipod 5 system in conjunction with the Dexcom 6 CGM. This means my insulin pump, which delivers my insulin, can communicate with my continuous glucose monitor (CGM), which measures my blood sugar. This allows my insulin pump to automatically adjust my basal insulin, which is the continuous background insulin that I need, to help me stay closer to my target blood sugar range. There are still a lot of inputs required from me such as carb counting and bolusing for what I eat, adjusting based on my physical activity, and the logistics of site changes and troubleshooting. The pods, which I change every three days, are expensive, even with insurance, costing $140 a month. However, while in grad school, the amount of time and energy the system has saved me has felt invaluable, even though it has meant taking out loans to pay for school. Previously, I was making up for the work the system is now doing, and when I went on this system I became aware of a renewed energy and increased capacity to focus on my schoolwork and be engaged with part of my mind that had previously been allocated solely to diabetes.

When I became sick abroad, my perception of the system as something that I had to justify to myself shifted to something that was a life-saving necessity. All the while that I was unable to eat and finding it hard to even think about diabetes, my CGM was reading my blood sugar and my insulin pump was giving me little micro-boluses to compete with its rising levels as I slowly drank soda and other fluids. By the end of the 24-48 hour period, it had given me an amount of insulin within my usual daily range, and kept me hovering from 150 – 180 mg/dl, which for me was a good sick day range. That is work I could have been doing, giving myself shots with a half-unit pen, but not nearly as precisely and definitely not as effortlessly. In fact, that would have added a new level of error that would have most assuredly brought more difficulties my way, which I say from previous sick day experiences.

It was amazing to be able to just focus on healing, instead of micro-managing blood sugar all day. In fact, once I made it through the nausea, I remember my recovery day as peaceful, rather than miserable, in part because I was not working, not in school, and not really focused on diabetes. Just resting and being cared for.

For years, in fact from the first weekend of my diagnosis, the narrative I have heard from many healthcare providers and diabetes organizations has been “if you take care of yourself, you can live a completely normal life with diabetes.” I get that this can empowering for many people, but I wondered for many years why I felt like I was failing to achieve that normalcy. Yes, I was managing to pursue my dreams, but I was working so hard, filled with anxiety, and felt like I was struggling to keep up. It might have looked normal from the outside, but from the inside, it felt like a continual marathon. Since I began using this system my life has felt a lot closer to normal – and I can barely afford it. I think my more accurate narrative for many years was, “if you work constantly, other people will think that you live a normal life, but you will know that you can keep fooling them only as long as you are willing to keep working 24/7 and say that you’re fine.” Or maybe, “you can live a normal life, but only if you have really amazing health coverage and a good deal of expendable income and supportive family and friends and adequate time off from your job…”

Now, at this point, my narrative has shifted to encompass the emotional adaptation to T1D that has been part of the journey for me. After many years of T1D I think my most accurate narrative is, “your new normal will be planning and adapting to the unexpected. It will be asking for and accepting help and meeting really amazing people who are navigating T1D too. It will be learning to rest and do less every day so that you are able to enjoy what you do. And it will be feeling like you are failing sometimes and living in fear of your health insurance coverage changing or ending.”

It makes me think that maybe if we said all of that, rather than saying, “you can live a normal life if you take care of yourself,” we would be forced to confront the need for support and the reality that without adequate, reliable, affordable access to diabetes management supplies, normalcy is a false promise. Moreover, we would take the relieve some of the burden from the person with diabetes and center it appropriately on healthcare systems, which are currently leaving many people out and bankrupting others.

I’m concerned that when I’m no longer in grad school, I will not have an insurance plan that allows me to get supplies at even the cost I currently pay, and I will have to go back to shots. It’s amazing the reservoir of mental and physical energy that going on such a system opened up for me, and I want that for anyone with T1D who is interested in such technology. That requires prioritizing insulin access as a human right. For many people in the world, shots or even vials of insulin are not guaranteed, and this is a horrific injustice. Battling supply scarcity and paying a huge chunk of your income just to have what you need to live steals the energy needed to dream and thrive. So as this amazing technology progresses, my hope is that for each advancement in diabetes tech, there is the same energy and eye to access for all people with T1D, both for the technology itself, and the insulin it requires.

*As always, I share my personal reflections on T1D and my writing is not medical advice.*

On the fourth day of blood sugar…

my meter gave to me, a 146 mg/dl.

Well, we all know that this is the most wonderful time of the year. There are gatherings and celebrations almost every night – and for a person with T1D, this can be a little exhausting. Last night, I was really excited to have no plans other than eating my leftovers from fancy Monday night dinner the day before.

I finished dinner at 7. At 9:30, my bg was 176 mg/dl or so. The past couple nights I’ve corrected and gone a bit low, so I decided to be more conservative and take just 1 unit of insulin, even though what I probably needed was something like 1.3, as my correction is 1 unit for 60 mg/dl, roughly. What’s a correction dose? you ask – it’s a ratio to understand how much 1 unit of insulin will bring your blood sugar down from a static level. So for example, 1 unit should have brought me down to about 116 mg/dl if my correction factor was correct. But it’s never that simple. This is like the correction factor in a controlled weather chamber. So if we could separate everything else that has happened in the day out from this individual measurement of blood sugar, then we might be able to make a precise estimate such as this. But here’s the thing, so many factors affect blood sugar.

Let’s play a game. Guess which of the following do not affect blood sugar:

stress
fat content in a meal
protein content in a meal
baths
exercise 2 hours ago

If you guessed baths, you fell for the trick! All of those things can affect blood sugar. In fact, I’ve been in a bath habit of late, because it’s relaxing, but it’s also caused me a few false lows. The heat of a bath or a shower can activate insulin such that you’ll have a blood sugar dip unexpectedly if you’ve injected insulin recently. For me, I tend to go low and then bounce back up. It seems like it is speeding up the insulin action, rather than magnifying its impact overall. For other people though, it might be a magnifying effect.

Anyway, I went to bed in the 140’s, I woke up at 2:30 AM in the 140’s, took roughly half a unit of insulin (which is a little tricky using insulin pens that only measure in 1 unit doses) and woke up at 6:40 at 146 mg/dl. Can I explain this? No. But my guess is that the fair amount of fat in my meal was slowly digesting and keeping my bg slightly elevated, despite the correction doses I took.

Moral of the story – in diabetes, nothing exists in a vacuum. No two days are the same. Rules make a complicated mess of factors sound simple when they are really not.

Happy Wednesday!

Katie

*https://pixabay.com/en/photos/question%20mark/?

119 mg/dl

On the first day of blood sugar my meter gave to me!

a 119 mg/dl at 9:20 AM.

9:20 AM?! – I know! Who gets to sleep that late in adulthood? The weekends are my sleeping time. I am like a bear, storing up for the next 5 days of waking up at 6:30 AM.

NOTICE: I am going to use “bg,” “blood sugar,” and “blood glucose,” interchangeably in these entries. They all mean blood glucose.

So how did this 119 mg/dl come to be? Well let me tell you, it was hard fought.

When I came up with this bg blog reporting idea, I didn’t consider the fact that it would expose my schedule and social activities, or lack thereof. Last night, Saturday night, I had no plans, which was exciting, so I cooked dinner, finished before 8 pm, and thought, “I’m well on my way to one of the four days!”

At 8:30 my bg was 96 mg/dl. Whew! I love a 96. Sometimes when I feel down about life, I check my blood sugar and it’s in the 90’s and I think, “Well, I’m sure doing something right!!!”

But I did not trust the stability of this reading. At 9:30 I checked again, just to see the trend. 149 mg/dl. Hmm, a slow rise that could very well have stabilized. “Great,” I thought, maybe I’ll even dip back down a little before bed.

At 11, I checked once more, just prior to laying down. 220 mg/dl. “Ugh”. Not good. So you know, my ideal range for prior to bed, if insulin action has ceased is 90 – 130 mg/dl. That’s just me. I was well above that.

I chose to take 2 units of fast-acting insulin. I also took 2 units of long-acting insulin, because on weekends when I sleep in past my morning dosing time, if I don’t take a little the night before, my bg will creep up in the AM hours.

At 2:30 AM I awoke, still caught up in my dreams, and feeling a little confused. 2:30 AM is sort of confusing time of day anyway, but I decided to check just in case. 101 mg/dl. Hmm. “Great!” Right where I wanted to be. I went back to sleep.

5:30 AM, I awoke again. Slippery mental state. Definitely low. 59 mg/dl (I hate to admit this, because night time lows scare people, but my body is great at waking me up…thanks body). So I ate 2 small spoonfuls of honey (about 1 tbsp in all), 2 cheddar crackers, and half a spoonful of peanut butter. Not scientific, just going on feeling.

Back to sleep!

I expected to wake up around 8 and be a little bit high. When I woke up at 9:30, I thought, “Ugh, I’m going to be really high.” But! But!? Somehow, 119 mg/dl.

So, there you go.

That was tedious huh?

Thanks for sticking it out.

Until tomorrow,

Katie

Worth the insulin

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…

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.

diabetesmeds

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 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.

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.

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