insulin

The Case for CGM

It can be extremely difficult to get an insurance company to cover the costs of continuous glucose monitoring (CGM) systems. The excuses that these holdout insurance companies provide as to why they don’t want to cover CGM are becoming less justifiable thanks to research and advancements in the way we think about the needs of people living with diabetes. This is why I am a Diabetes Advocate.

So far in 2014, I have only been able to get four Dexcom continuous glucose monitor sensors out of my health insurance company. Four sensors is a one month supply. It is now July. That means for five months out of this year (so far) I have not been able to wear my CGM or benefit from the data that it gives me and the alarms that it uses to tell me when my blood sugar is dropping too low or rising too high. Each time I try to get more CGM sensors, I have to restart the approval process with my insurance company, spend weeks going back and forth between Dexcom, my endo, and insurance trying to get all of the documentation together to submit for approval, just to be denied because either Dexcom isn’t a preferred provider, or because the insurance company has decided that there isn’t enough evidence to support that CGM is a benefit and results in better control of diabetes. So then I appeal. And I know there are many, many other people struggling with getting CGM coverage by their health insurance just like I am.

This is also why I am a medical librarian. Challenge accepted, health insurance industry. Bring it on.

The most dangerous side effect of insulin is hypoglycemia, or risk of dangerous low blood sugars. The ability of CGM systems to alarm and notify a person with diabetes is one of the most valuable and beneficial advances in diabetes technology ever. EVER. The fact that there are small devices now that can warn us, as if to say, “Hey dude, your blood sugar is dropping. It might be a good idea to get a snack or something,” is incredible. This is an incredible benefit to people with diabetes so that they don’t get in a dangerous situation with a low blood sugar that can leave them incapacitated, unconscious, or possibly even dead if it happens in the middle of the night while they are asleep. Do you know how health insurance companies make money off of a dead person with diabetes? They don’t.

CGM technology benefits insurance companies too. It is incredibly cheaper to provide the technology that will alarm and cue someone to get a sandwich, a juice box, or a Level gel to get their blood sugar up on an ongoing basis than it is to pay for home or work visits by paramedics, rides in the back of an ambulance, hours in an emergency room, and likely overnight stays in the hospital depending on the severity of the lows. A low blood sugar can happen at any time, and is usually unpredictable based on varying amounts of food, activity, stress, varying absorption rates of body tissue from one spot to the next, and any other factor in life that can cause any amount of change. Sometimes they happen for seemingly no reason at all, and therein lies the danger.

How about…

…a systematic review from 2012 that concludes, “There are indications that higher compliance of wearing the CGM device improves glycosylated haemoglobin A1c level (HbA1c) to a larger extent.”

http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD008101.pub2/abstract

…the research that concludes, “CGM with intensive insulin therapy appears to be cost-effective relative to SMBG [self-monitoring of blood glucose] and other societal health interventions.”

http://www.ncbi.nlm.nih.gov/pubmed/21917132

…the research that finds that regardless of prescription approach, “…patient-led and physician-driven prescription. Both modes of using CGM provide similar long-term metabolic improvement.”

http://www.ncbi.nlm.nih.gov/pubmed/22208716

…the one with early analysis of cost-effectiveness of CGM that says…well, I’ll just let is speak for itself. “…the overall quality-of-life effect of CGM arises from its ability to both improve the immediate quality of life of diabetic patients as well as reduce future complications through enhanced glycemic management.” But wait, there’s more! “The provision of greater glucose control data may have improved the quality of life of patients by facilitating decisions related to food intake and insulin regimens as well as by reducing the risks and fears of hypoglycemia.”

http://www.ncbi.nlm.nih.gov/pubmed/20332354

…real-world benefits of CGM. “Personal CGM, in a real-world setting, improves glucose control and reduces the rate of severe hypoglycemic episodes.”

http://www.ncbi.nlm.nih.gov/pubmed/20551007

This is only a start. There is more research out there, and more research on the way that shows the benefits of CGM on the lives of people who use insulin to manage their diabetes. It is time for health insurance companies to get with the program, and it is time for us to speak up and shout from the rooftops what we need, and make it happen. Some health insurance companies are better than others (PPOs tend to be more willing to cover CGM than HMOs, for example). Until coverage of CGM is non-negotiable, our work as advocates for our own health and well-being is not done. We should not have to beg and plead to get this widely accepted diabetes technology that has already been and continues to be proven to improve and save lives. Coverage of CGM should be non-negotiable, expected, and mandatory.

Now that we are staring down the barrel of the potential for the bionic pancreas in a few more years, the need for CGM acceptance by insurance companies is only going to grow. Without insurance companies accepting that CGM is indeed a good idea for people with diabetes, and without insurance companies making CGM technology accessible without the barriers and complicated processes of getting approval, and without more research documenting the cost benefits and effectiveness of CGM versus emergency responses to hypoglycemic episodes (low BGs), the bionic pancreas will never make it past the prototype phase. And we need this forthcoming technology that the bionic pancreas, and the research behind it, provides.

I’m tired. I’m so very tired. I’m tired of living every single day and running every decision that I make through a diabetes filter. I’m tired of having to prick my finger before I leave for work in the morning to make sure that my blood sugar level is okay for me to be able to drive. I’m tired of checking before meetings to make sure that my blood sugar isn’t dropping, for no other reason than so that I don’t get caught in the middle of a meeting not making sense because my blood sugar dropped too low. I’m tired of having to check before I put any bite of food in my mouth, and then having to check an hour or two after to see if that food and the insulin that I took to cover it worked the way that I thought it would. Sometimes it does, and sometimes it doesn’t. Most of the time it defies explanation. I’m tired of having to decide if I get to go to the gym and workout today based on what my blood sugar is right before I go. I’m tired of having to check so that I can drive home. I’m tired of having to check before I can go to bed. I’m tired of not being able to go to bed because I did check, and having to wait for my blood sugar to go up or come down.

I’m tired. I’m tired of the hassle. I’m tired of the bullshit. I use that word because that is just how tired of it I am. I don’t have pipedreams of a cure for diabetes. I’ve had diabetes for 33 years. It’s all I know, and all I have ever had to deal with, and I don’t walk around with imaginary hope that a cure is coming in five years, ten years, or even necessarily in my lifetime. I hope it does. Maybe it will, but short of a scientific breakthrough, I don’t feel like that is the best place for me to invest my energy. In this age of technological advancements, this age full of the smartest people that have ever lived on this planet, and this age where people are open to change and progress and opportunity, I want to be able to rest my mind when it comes to diabetes. Let’s work together to support things like the bionic pancreas, CGM coverage by insurance companies, and these things that simply make life with diabetes easier and better.

I don’t feel like making life easier with diabetes is really asking too much. If you think it is, then you try it. See if you can make it 33 years counting fingerpricks, carbohydrates, activity levels, insulin doses, times you’ve found yourself in a room waking up and not knowing where you are because of a severe low blood sugar, a tongue chewed up from a low blood sugar seizure, bruises that you don’t know how you got, and cracked ribs from the physical exertion of just trying to survive that low. Survive that, and then I dare you to tell me how CGM isn’t effective and isn’t necessary.

I double arrows down dare you.

CGM Double Down Arrows

Update, 7/30/2014:
I am so fortunate to have received a few sensors from other PWD who had the extras to spare. Thank you! You know who you are, and you have been a big help (he types, as he is recovering from a BG of 39 and still a little shaky). I received a call from Dexcom this afternoon, confirming that they finally got all of the pieces that they needed with insurance approval and documentation from my endo, and they are overnighting me new sensors. Yay! It took 7 months, which is ridiculous, but people with diabetes are experts at being stubborn and steadfast until we get what we need (*cough* bionic pancreas *cough* encapsulation *cough* smart insulin). So thankful that it appears to have finally been worked out. Ciao for now! (Did I really just type “Ciao for now!”? I must still be low…)

Update, 8/21/2014:
Order got delayed, again, before it could be shipped to me. Today I finally received a 90-day supply of Dexcom sensors, allegedly with auto-renew when I need more. Still not clear on what took so long, aside from the explanation from my Dexcom rep that it was dramatically delayed by all of the authorizations required in order for insurance to approve. I’d demand more of an explanation, but it’s been a long battle, and I’m tired. Glad to finally have CGM data again, even if it did take 8 months longer than it should have.

Dealing with Rx Coverage Changes

Open Enrollment is that magical time of year when you have a brief window of opportunity to make decisions about your retirement, savings, life insurance, health insurance, and whether or not you want to join the local granola grocery co-operative via payroll deduction. Okay, so maybe some parts of Open Enrollment are more important than others.

At my work, we have a health and wellness fair during Open Enrollment where all employees can show up and visit vendors, talk to various company representatives, have their blood pressure checked, get flu shots, and participate in testicular cancer screenings. It’s usually a complete madhouse, with way too many people, so I tend to avoid it if at all possible. This year, however, I went so that I could get some information on my health insurance options, and make the rounds taking advantage of free information and basic health services.

Wait…what do you mean nobody was supposed to be performing testicular cancer screenings? Dangit! Fooled again!

At the end of the week, I was clicking around doing research and exploring my options for 2014, and I stumbled across some panicked discussions of changes to prescription drug coverage. As I lurked, and got caught up on what was going on, I realized that the prescription drug insurance company that folks were talking about was the same as the one that I use to get those things that I can’t live without, like insulin and BG strips.

Word has been getting around that Express Scripts is changing their coverage, or preferred coverage, or well, really it just depends on how you look at it and what your contract with Express Scripts says. But don’t take my word for it. The CMO of Express Scripts lays it out pretty clearly: It’s all about money. Shocker, right? (That’s sarcasm.)

For me and my diabetes, my biggest concern had to do with the coverage of Novolog shifting over to a questionable category in the Express Scripts 2014 Forumlary (PDF) called “Excluded Medications.” What does that even mean? Does it mean that Novolog is no longer covered at all? Because that is what I think when I see the word “excluded.”

Well, despite being on a list of “Excluded Medications,” I was able to confirm with my HR representatives and pharmaceutical reps that “excluded” really means that those drugs and products are no longer “preferred” medications, but are still covered as non-preferred medications, which means they fall under a higher copay, as well as possibly requiring the patient to pay the difference between the non-preferred brand name medication and the preferred alternative. As an alternative to Novolog and Apidra, Express Scripts is suggesting Humalog. When I talked to a physician friend of mine and he mentioned a recent visit by a Lilly rep (who manufactures Humalog) to his office, the word he used to describe the Lilly rep’s reaction to the Express Scripts formulary changes was “jubilation.”

But don’t worry folks, Viagra is still covered and preferred.

The shared reasoning behind so many drugs moving over to the non-preferred list at Express Scripts is because they do not believe that many newer, more expensive, more recently researched medications are as effective as their cheaper counterparts. They feel that patients already have enough options. Besides, patients are all the same, right? I mean, if you have diabetes, and I have diabetes, then we’re basically twins. Right? No.

I know what I need for my diabetes. My immediate healthcare team knows what I need for my diabetes. My A1C says that what I’m doing is working pretty well. This is MY diabetes. There are many sort of like it, but this one is MINE. Pharmacies and prescription drug insurance companies focus on how much I cost, and how much money they stand to make or lose from me, which is the biggest decider in the level of service that they provide. That is business, and as someone with a chronic condition who needs prescriptions on an ongoing basis, I’m not worth as much to them as a person who pays a monthly premium but never uses prescription benefits. To hedge their losses, they move prescriptions that are actually working better over to a non-preferred status so that they don’t have to lose as much money filling orders that are more expensive. To be honest, I’d probably do the same if it were my finances. The difference is that my personal financial savings decisions don’t usually require other people to make decisions about how they are going to live and survive. < /rant >

In some situations, where your physician feels that you need the brand name medication that is on the non-preferred list, there is a solution that may help. I was advised by my benefits group of the following:

If you request a preferred brand-name drug when a generic is available, you must pay the difference between the generic cost and the preferred brand-name cost, plus the appropriate copayment or coinsurance. If your physician writes on the prescription that the preferred brand-name drug is medically necessary or“dispense as written” and the reason, you pay only the appropriate copayment or coinsurance.

Maybe none of this information is helpful to you. Maybe you are covered at 100% and don’t have to worry about copays, preferred and non-preferred medications, or notes from your doctors that include the words “medically necessary.” Or maybe you’re wondering how you’re going to be able to afford insulin in 2014, along with BG strips, pump supplies, glucagon, doctor appointments, and other diabetes randomness. Whatever the case, DON’T PANIC. In most cases, you still have time to get an appointment with your healthcare team to talk about your needs and build a plan for what is next. With insurance, prescriptions, and even diabetes advancements, the only thing that is constant is change. Diabetes is a different beast every day, and we adapt to it constantly. This too, we will adapt to.

Just Ask

It’s the 4th Annual Diabetes Blog Week! If you want to participate, or if you want to see what other diabetes bloggers have to say about the daily topics over the next seven days, head over to Karen’s blog at Bitter~Sweet and jump in.

Today’s blog prompt comes from Melissa over at Sweetly Voiced.

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

Unless I’m traveling or just too busy to stop what I’m doing (or in denial…yes, that happens), I see my endocrinologist (endo) and CDE every three months, my ophthalmologist (eye doctor) every year, and my dentist twice a year. That amounts to, at the very least, four hours a year in the office of my healthcare team with my pancreas hanging out, my pupils dilated, or my mouth wide open. Sometimes at the same time.

Considering that there are 8760 hours in a year, I spend about .5% of my year in doctors offices in various compromising positions (not counting labs, time on the phone with insurance, time spent hooking so that I can afford my copays, etc.), which begs the question… How the heck am I still alive?

There are plenty of other doctors that I could spend time with too. Presently on my list of docs to find include a dermatologist, a podiatrist, and a psychologist. That last one will likely make my doctor time (and spend) increase exponentially, but that’s a conversation for another day. When I’m less crazy. Because that happens too.

The thing is, I need all of the services and advice of all of these doctors in order for me to stay at my optimal health status and achieve my health goals. Yet, I struggle. What little bit of time I have with each of these doctors, we don’t have a chance to talk about some of the things that they could really help me with probably better than anyone.

At my endo, we talk about diabetes, pump settings, high and low blood sugar trends, A1C’s, prescriptions, and sometimes even new diabetes research and technology. We don’t talk about my struggle with my weight, and how it affects me both physically and mentally. We don’t talk about my depression, and how sometimes I’m smiling on the outside and absolutely falling apart on the inside, and nobody ever truly knows the extent of it. We don’t talk about stress, and ways to manage being overloaded, and strategies to cut it down so that I don’t have to add hypertension and heart disease to my laundry list of sh–stuff to deal with on a daily basis.

At the eye doctor, we talk about diabetes, A1C’s, and the importance of keeping and EYE on things (see what I did there?) in the back of my eyeballs. We don’t talk about how prescription glasses are expensive, especially when you need multiple pairs (stylish regular glasses, plus sunglasses that make you think you look stylish, plus sport sunglasses for when you play volleyball on the beach with no shirt on all Top Gun style). We don’t talk about how much time I spend staring at a computer screen, and whether or not that is good or bad. We don’t talk about anything to allay my fears and anxiety from potential and, in reality, way over-exaggerated diabetes complications. We don’t even differentiate between Type 1 and Type 2 diabetes, but rather treat it as just this overarching definition of diabetes that sucks and makes you go blind, your feet fall off, and your wenis not work properly. And I need my wenis to continue to work properly dangit! (I don’t even know how I got from eyeballs to wenis, but I’m mildly impressed and entertained with myself right now.)

I want my healthcare team to know that, just because it isn’t their area of expertise, all of these various other things in Martin World impact me, and are related in some way, and have the potential to impact my health in both positive and negative ways. Because I’m stressed out that my BG’s are running higher than normal may mean that I don’t check my BG as often because I don’t want to deal with the stress that I feel when I see that high number on my meter. So then I go get something awful to eat to feed the stress with, and then my pants start fitting a little tighter, and I feel like I’m the size of a whale and the idea of an 19th century style corset sounds like a pretty great idea if it will make my pants fit better. Then my pants get too tight and the pressure makes my eyeballs fall out and my teeth point forward.

What I also want my healthcare team to know is that I have absolutely no clue how to bring these things up and talk about them in the time limit and in a way that makes sense to them before they have to run off and see the next patient. I’m doing good to remember to even show up for the appointment most days. If it’s not on my Outlook calendar with an alarm, don’t expect me to be there. If there was one thing I wish they would all ask, it might be, “So all of these numbers aside, how are YOU doing? Feeling okay? Any particular issue not related to insulin, BG test strips, and pump supplies that I can help with?”

Just ask. The answer might be no most of the time. But sometimes it might be yes. And that’s when it is most important that you asked, and that you are there to listen.

To view other posts on this topic, click here.

Just Another Day

This past weekend was a good weekend. No deadlines except that one that made a nice whooshing noise as it went by, nowhere to be, just an opportunity to enjoy things at a leisurely pace.

Saturday, A-Flizzle and I got a wild hair and decided it would be fun to go on a six mile urban hike, which is a more adventurous way out saying that we walked through a few neighborhoods and down a few sidewalks. It’s kind of amazing the things you notice when you are on foot that you never see from driving around in a car. We found a house with a dinosaur in the front yard, several Florida rooms off the sides of houses with beds in them that we were hoping to catch someone dozing in, a new sports bar and restaurant being built, and we learned that the pedestrian crosswalks have absolutely no rhyme or reason for when they decide to let you cross the street.

Throughout the day, I thought I had done a really good job of counting carbs, factoring in activity, and doing a good job of keeping tabs on things so that I didn’t go low from the activity or high from any of the delicious things that I ate, like the banana and Nutella crepe that I may or may not have had for lunch at about mile 4.5 of our urban hike. And by the way, this is my blog post, and I call it Nutella, not Noo-tella…because there’s a freakin’ “nut” in it. YPONMV. (Your pronunciation of Nutella may vary.)

After a day of near perfect BG’s, around bedtime on Saturday night I realized that I wasn’t feeling too well, so I did a quick check to see where things were. 342. I was pissed. Are you for real?! I counted everything! I know I got the math right, or at least in the ballpark enough to not merit a stupid 342 BG. What the #$@#%#$?!!!!

After I got done pitching a fit, I tried to think what might have jacked my BG up so high. Surprisingly, I don’t think it was the banana and Nutella crepe. There was nutritional info, and I’m pretty sure I was in the ballpark on that one. Since it was sunny and over 90 degrees outside when we were urban hiking all over town, I settled on the idea that the insulin in the tube of my pump probably got a little too warm during the activity and had lost its effectiveness. Insulin is supposed to be kept cool or at room temperature, and let’s face it, late Spring and Summer in Florida is far from being room temperature by any stretch of the definition. Something you have to be aware of if you’re going to sport an insulin pump is that, every once in awhile, heat happens.

I dosed down the 342 BG with a shot of insulin via the old faithful syringe, and then switched out the insulin in my pump. Either I overestimated how much I needed to pull that 342 BG back down to normal, or the activity of the day finally caught up with me, because I woke up around 3:00am at BG 35. After a juice box and a couple spoonfuls of peanut butter (which I may or may not have shared with Hopper dog), I woke up in the morning with a perfect BG of 88.

Diabetes is a total game of numbers. In order to stay alive we have to count everything. And guess. A lot.

We have to know how many carbohydrates are in everything that we put in our mouth, what our blood sugar (BG) level is at the time, and guesstimate how much activity (or lack thereof) is going to affect our metabolism and BG level. Then, on top of that, there are ever present questions about how accurate our BG meters are, we never really know for sure how effective the insulin that we’re injecting is going to be (especially after it has been in an insulin pump for a few days), and our bodies sometimes process that magical life elixir differently than yesterday, when we had the same food, the same activity, and the same BG levels.

My endo says that “doing the same thing over and over again and expecting different results is insanity…unless you have diabetes.” In Martin World, it’s just another day.

Why You So Stubborn, Diabetes?

I think of myself as a typically optimistic person, especially when it comes to my diabetes, because really my life with diabetes is better when I’m able to cast it in a positive light. Even so, that doesn’t mean that I don’t spend a few days in the trough of a wave every once in awhile.

Today was one of those days. I didn’t sleep much over the weekend, so this morning I got up early and fed the dogs and then decided I would try to sleep a little bit longer, considering it was Sunday and all and I didn’t have to go to work or anything. About the time I got comfortable, some masochist with a lawnmower decided that 8:00am was a fine time to mow the grass next door. Seriously, how do you get up so early on a Sunday and think, “I’ll go mow the grass this morning.” Read the paper and have a cup of coffee for Pete’s sake. Have a whole pot if it tickles you. Just don’t go outside and crank up the mower and wake up the neighborhood! </rant>

I like to make a big breakfast at least one morning on the weekend. I’m doing good to get dressed and get to work on the weekdays, so Sunday mornings are my time to pause and enjoy the thrills of a pot (or two) of coffee, eggs, sausage or bacon, and Meet the Press with A-Flizzle. If you ordered that meal at Denny’s, it would be a Grand Slam Nerdy, and could you leave a carafe of coffee on the table please?

I found a little bit of Bisquick left in the fridge, which is weird because most people put that in the pantry, but I decided to use it up and make a couple of pancakes. I limited myself to just one pancake, the one that came out looking like it had been put in somebody’s pocket instead of in the skillet, because I didn’t want my blood sugar to go through the roof or anything crazy. And it didn’t. It just hovered around the stinkin’ penthouse suite all day long, making me real frustrated because it wouldn’t come back down to the lobby where all the normal BG’s hang out.

That was the only starch that I had on the day, and I hovered around 200 mg/dl all day long. Being used to running a BG of around 100 lately, I felt that 200 in full effect. I even resorted to rage bolusing, just throwing a max amount of insulin at it to try and get it to budge. We went to see Hunger Games with some friends, and I barely touched the popcorn. Then we went to dinner afterward, and I couldn’t even eat because I was so nauseous and thirsty from the stubborn high BG. Finally, after I got home and gave up, I started to sink back down to normal again.

I ended up having to take over 100 units of insulin today to combat diabetes. That really, REALLY frustrates me, considering how a normal day for me (with carbs) is closer to 60 or 70. In hindsight, I shouldn’t have eaten that pancake, but there was no way of knowing that it would have been so stubborn all day long. The beauty of the conundrum is that it might not have even been the pancake. It could have been that my insulin lost its potency, or that I’m fighting off a virus of some kind, or that I was wearing green today instead of blue and my diabetes was offended. In other words, who knows?

Some of you may be reading this and thinking, “Wow, he’s got the diabetes real bad.” You may be thinking, “He really isn’t taking care of himself having to dose that much to get his blood sugars to cooperate.” You might even be thinking, “I would have been pissed too if that guy had woken me up with that damn lawnmower!” Or you might just be thinking, “Yup, been there, done that.” I’m convinced that some days diabetes has a mind of its own and does whatever it damn well pleases, regardless of what we try to do to “control” it.

Fighting back the tears, I was telling A-Flizzle about how frustrated it makes me when I feel like I have no control over what my body and diabetes has decided it wants to do. I hate feeling like I’m just strapped in and along for the ride, wherever it may take me. That is why I have the CGM, why I check my blood sugar on average 6-8 times a day, and why I try and count everything that goes in my mouth so that when I do make a mistake, hopefully it isn’t a complete disaster.

This situation is a good reminder to myself that we can do seemingly everything right in our lives with diabetes, from correct carb counting, insulin dosing, BG checking, and everything else, and yet we can still have those days where all of the pieces just refuse to fit together.

Tomorrow is a new day, with a new inset, and a fresh reservoir of insulin in my pump. So bring it beetus! I’ll be your Huckleberry.

Cake or Death?

If you have diabetes, regardless of type, it is inevitable that at some point you have encountered some form of THE question…

“Can you eat that?”

Sometimes it takes on the shape of “Should you be eating that?” or “Is that good for your diabetes?” or “I’m eating for two, even though I’m a dude, so why are you eating that when I was counting on eating your share?!”

When I’m asked this question, sometimes I will respond with some well-deserved diabetes education. “Yes, I can eat this. I just have to know how many carbs (carbohydrates) are in it, and what my blood sugar is, so that I can give myself the correct amount of insulin to keep my blood sugar from spiking too high due to not enough insulin, or going too low because I dosed too much.”

That is usually enough to get either understanding or slightly confused looks of acceptance. Math and science, for the win! And truthfully, I’m typically happy to educate. I like it when people learn about real life with diabetes.

If I’m in a mood though, or if I’m having a low BG (low blood sugar) and don’t have the patience for a diabetes learnin’ session, I might just respond with a snotty little question of my own, such as, “Should YOU be eating that?” That’s always a show stopper, as the guilty party takes that last bite of chocolate cake and shamefully makes their way back to the other room while I feel only slightly guilty with my shaky, moody, slightly confused, sweat-drenched self. Cake or death? Whatever, I’ll apologize later…GIVE ME CAKE!

Since I got my CGM (continuous glucose monitor), even more questions have been introduced to my world with diabetes. A-Flizzle is getting good at recognizing the different tones of the CGM alarms, but most people around me and my beeps and bonks aren’t able to decipher if I’m low, high, have a low reservoir, a low battery, or if I just forgot to hit “OK” after my last BG (blood glucose) check. Still, I’m glad when it beeps and they stop to ask, “What does that alarm mean?” It doesn’t matter to me if they were able to define the alarm or not. What matters was that they heard it, and recognized that it was diabetes related, so that if I need something, I have their attention. Diabetes win!

Another diabetes win happened this past weekend when A-Flizzle was supervising, I mean, helping me organize my diabetes supplies. While sifting through test strips, glucose gels, infusion sets, and alcohol swabs, we came across this little gem when I got my paws on a fresh box of CGM sensors.

Do you see it? Look a little closer.

Cake! On a diabetes supply container! For a device that helps monitor glucose levels!

Cake or death, you ask? CAKE! Definitely, cake.

Don’t Be Evil

Sometimes life has a way of showing you that there are things that you need to work on. I’ve got plenty of examples lately that have left me running a gamut of emotions. (See also: Blog post theme for the week.)

One such example that spurs a looming sense of overwhelm is my work email Inbox. At the end of the day on Friday I had 496 unread emails. 496! How am I supposed to do my job effectively when I have more emails coming in than I can read and take care of and respond to? Plus, I just assumed an additional ton of responsibility, a new project, and another staff member to supervise. How in the world am I ever going to keep up with it all? My answer: Post-Its.

I love Post-It notes. All shapes, all colors, lines, no lines, doesn’t matter to me. I color my world with them. Well, that and glucose tabs. My favorites are the original square Post-Its. Like Chuck Taylor All Star’s and golf carts with the word “Prius” spray painted across the front, nothing beats the original.

I’ve set a new rule to write down everything that I want to get done for the week on a single Post-It. Mostly work-related stuff, with the occasional “order insulin” or “pay Medtronic again” thrown in for good measure. Once that note is full, I’m not going to fret over anything else getting done until I’ve crossed off everything on that list. If I can get everything on that one Post-It done, then my hope is that it will help me to stay focused and make progress, while also helping me to reduce the other “ess”…stress.

Inspired by Mike (What Some Would Call Lies) and Karen (Bitter~Sweet), there is also something else involving Post-Its that I want to start doing: Monday Mantras. I’ve started looking forward to seeing what Mike and Karen are going to post each week, and I think it really sets the tone for the week. Which is to say if you see me post a Monday Mantra that says, “Don’t strangle anyone,” it would probably be a good idea to tell me how fantastic my hair looks that day, or some other pointless nicety. You know, just in case.

So without further ado…

Unconscionable Numeracy

Last week at the 6th Annual Education Forum on Diabetes Prevention & Management conference, I witnessed clinical healthcare professionals learning and sharing about the impact of diabetes, issues from the patient perspective, issues from the healthcare professional perspective, and enough data and PowerPoint slides to make Bill Gates proud.

Two presentations really stood out to me. As a person with type 1 diabetes, or a type 1 diabetic if you prefer (you say “noo-tella,” I say “nuh-tella”), I gravitated toward those portions of the conference that I could identify with the most. I like hearing various perspectives of my particular flavor of diabetes, especially from the side of people who work with and deal with diabetes without having the disease themselves.

First, there was a presentation about numeracy.

Numeracy: adjective; able to use or understand numerical techniques of mathematics.

In other words, numeracy is the ability to understand and use numbers in our day-to-day lives. Those of us with diabetes, especially type 1 diabetes, do it all the time, seemingly without thinking because we’ve done it for so long that it has become almost habit. We can do carb and blood sugar math like it’s nobody’s business! For example, I know that my insulin to carb ratio is 1:8. That means if I have a meal or a snack with 20 grams of carbs, I’m going to have to take 2.5 units of insulin to cover it so that my blood sugar doesn’t spike and make my head explode. (Not really, but my blood sugar will go high, and I hate, hate, HATE being high.)

I loved this presentation because the presenter really linked it to the patient perspective of living with diabetes. She highlighted the fear of all the numbers that sometimes paralyze us to take action. That applies no matter what type of diabetes you have. She said, “Something that healthcare providers have to realize is that if we make a mistake in math in our checkbook, it’s really no big deal, but if a type 1 makes a diabetes math mistake, they can die.” There is not a lot of room for mathematical forgiveness with type 1 diabetes.

The next presentation I went to was awesome because the presenter was my endo. I love my endo, so pardon me a minute while I gush. I really appreciate him because, even though he doesn’t have diabetes himself, he gets what it is like to live with diabetes as well as anyone I have ever met. He was sharing with the room some of his experiences with helping children and parents adjust and learn to live life with type 1 diabetes. Having grown up with diabetes myself, since age 2, I could appreciate a lot of the stories he had to share; many of them could have been about me.

He opened his presentation by telling every single diabetes and healthcare professional in the room that “it is absolutely unconscionable what we ask people with type 1 diabetes to do to stay alive.”

Unconsionable: adjective; not in accordance with what is just or reasonable.

Yes, yes, and more YES! I’m paraphrasing here, but he explained that sustaining the constant counting and checking and pricking and poking and dosing and everything else it takes to live with diabetes is really not reasonable or realistic. He said, “Albert Einstein said that doing the same thing twice and expecting different results is the definition of insanity,” then added, “…except with diabetes.” A person with diabetes can do the same exact thing and eat the same exact foods for two days in a row and get totally different results. The best that can be hoped is that people with diabetes will do as much as they can.

Something that I’ve always appreciated about him, and the reason he is still my endo even though I am 32 years old (still a kid at heart people, don’t get it twisted!), is because of the perspective he shared at the end of his presentation. He said that in his practice, he refuses to tell a person with diabetes to “test” a blood sugar. A test you can pass or fail. A blood sugar check is just a check, returning a number that is neither good or bad, just possibly something that needs to be addressed. All these numbers that come with diabetes are just data. Just. Data.

What we have to do to live with diabetes may sometimes be unconscionable, but the numbers that we see staring back at us should never be that. We have to learn to use all of these numbers in our diabetes world to make decisions, and react to the best of our abilities.

That has to be enough.

Never Trust A Sweet Potato

Wednesday was one of the hardest days with diabetes I’ve had in awhile. Well, at least since this day, which actually wasn’t that long ago. But anywho…

This episode began on Tuesday night, when I noticed that my blood sugar was stubbornly high after having dosed enough insulin to take down a small rhino. I thought I had dosed correctly for the sweet potato that I had for dinner, but apparently sweet potatoes put on a good show, with their sweet and seductive scent, but they are actually full of lies and half-truths when it comes to their nutritional info.

This is a Public Service Announcement: Sweet potatoes are not to be trusted!

I woke up with a BG of 235 mg/dl on Wednesday morning, which I attributed to the fact that I probably didn’t dose enough before bed. Not a huge deal, go-go-gadget correction bolus, and it was off to work I went.

The correction bolus should have done the trick. Instead, my BG wavered a little, but mostly it just hovered in the mid 200’s all morning. For some, that isn’t that high and they can go all day long in that range and not be out of sorts. For me, it made me want to dig a hole and throw myself into it. I’m accustomed to numbers closer to the 90-100 range. I had a headache, I was nauseous, I felt like someone had replaced my blood with syrup, my insides ached, I had no energy, I wanted to go lay down, and all I could focus on was how awful I physically felt.

After giving the insulin plenty of time to work, and still being high, I corrected again. I wondered if maybe the morning BG spike had also included the dawn phenomenon, along with the errant sweet potato bolus, so maybe that was why my BG was being stubborn and not dropping down to normal.

I tried to get into working and distract myself from the awfulness I was feeling, and give the whole situation a little time to work itself out. Apparently it worked too well, because by lunch I had dropped down to 45, after ignoring my CGM alarm and then getting busy and forgetting about it. For future reference to you CGM-ers out there, don’t do that.

Lately I’ve been working through lunch, only to look up at the clock and realize it is mid-afternoon and I haven’t stopped to eat yet. Since I was at 45 and low brain had kicked in with full force, I quickly grabbed some chicken nachos for lunch. I figured there would be enough carbs in that to cover the 45, but not so many that I couldn’t easily manage a proper insulin dose for it.

I thought I dosed properly for it. I even looked up the nutritional info online. Still, I was back up to 245 by the end of the workday, and also back to feeling like someone had replaced my insides and physical well-being with frustration flavored Jell-O.

I remained sky high for the rest of the afternoon and well into the evening. By 8 o’clock that evening, I was physically ill. I thought I was dropping at one point, and that it was safe to eat and dose for dinner, so I had one serving of eggplant parmesan so I didn’t skip a meal and end up low again. Unfortunately, the eggplant parmesan had much more of an effect on my blood sugar than the insulin I had dosed to cover it.

I can’t say for sure, but I really think I spent all night and day dealing with insulin that had lost its mojo, its libido, its life force, its essence, its right stuff. What the French call a certain… I don’t know what.

Once I got home, I cracked open a cold one (a new vial of insulin, that is), refilled my pump, and my BG’s since then have been rock solid and right where they are supposed to be.

Moral of the story: Beware of skunky insulin. And never trust a sweet potato.

The Big & Small of Diabetes

Diabetes is sometimes larger than life.

There are all these really BIG prescriptions, written with really BIG pens.

Then you've got all these BIG tests you have to take.

Sometimes you get to eat really BIG food.

But then you have to take really BIG shots.

And if you do it right, you end up a BIG success.

All the BIG things that go along with diabetes are important, but it helps to remember the small stuff too.

As A-Flizzle reports…

I think most people would consider me creative, but not artistic. I love crafts, but I also like detailed instructions on how to get it “just like the picture.” What can I say? I have OCD and am a type A personality to a tee. Nevertheless, I was very excited when Martin asked me to participate in Diabetes Art Day and make something that expressed how I feel about being a Type Awesome. I feel like the whole undertaking of the craft project brought us closer together and, of course, was so much fun!

This is what I consider my “family” (featuring Martin’s dog, Hopper, but absent my dog, Bindi and Martin’s cat, Squirt) and how sometimes I feel like Martin is in a bubble with his diabetes, where he takes on too much all on his own and no matter how supportive I am (as evidenced by my “Good Job” ribbons) there will be some things I just can’t and don’t “get.” This is perfectly okay, but a hard pill for me to swallow, as I am a fixer and like to take care of people. In the end, I think we are both continuously working to pop the bubble and find a greater understanding that while it’s his disease, we are in this together.

	Rick Phillips on I Lied
	Tina on A Bunch of Sensitive Pric…
	Heather Gabel on Diabetes as a Disability
	Martin on Diabetes as a Disability
	Heather Gabel on Diabetes as a Disability