A1C

We Interrupt This Irregularly Scheduled Diabetes

I’ve been running high lately, and I don’t know why.

BG 220

That’s a lie. I know why. I eat too much, too often, and too late. Or I don’t eat, and then I go low or get super hungry, and then I eat all the things. Dang those holiday treats!

I haven’t been working out, exercising, or bringing sexy back. I have a gym membership, so accessibility to a place to exercise certainly isn’t the problem. I always find some seemingly good excuse for not getting there. First I was busy trying to find a new place to live. Then I was busy moving. Then I hurt both hands during the move.

Hurt Hands

Then I got even busier than usual at work creating something that I am extremely excited about. We are starting a new diabetes journal, available to all, and we’re now accepting research and volunteers to be peer reviewers. Check out The PLAID Journal. You can see a couple of videos and news articles about the The PLAID Journal on the Announcements page. Also, the Facebook page for PLAID. (Lots more to come on PLAID, so stay tuned.)

Then the knee that I hurt while cycling several years ago flared up again. Add to all of that an ever-growing to-do list, and there is always something that keeps me focused on something other than me.

I hate it. I hate the feeling of my blood sugar being high. I hate that I can’t get my BG to stay where I want it. I hate when I prick my finger and see a number that is dramatically higher than I feel because my body is getting used to it. I hate being thirsty. I hate waking up in the middle of the night to go pee. I hate thinking about it. All. The. Time.

I also hate being overweight. I hate feeling like I am the overweight that I am. I know that we’re in an age where we are supposed to accept our bodies and all that jazz, but this is not normal. I can’t just accept this. I don’t feel like me at this size. I feel like I’m stuck in a heavy fat suit, and everything I do is just that much harder because of it.

But for whatever reasons, I can’t seem to change it.

Before April of this year, I was on Weight Watchers, and I was doing pretty well with it. I had lost over 10 pounds in three or four months, and was feeling pretty good. I was on track to get back to a weight and size that I wanted to be. And stronger. And back to a more human shaped geometry, instead of just round.

Martin and Amanda on Bicycles

Today, I’m the heaviest that I’ve every been. Almost 207 whopping pounds. I put that out there for no other real purpose than to make it real. I should be about 170, in an ideal world. And I’ve seen a human skeleton. Short of an anatomical anomaly, there is no such thing as “big boned.” I’m just plain old overweight right now.

As joyous as April started out with Amanda and I tying the knot in beautiful Key West, it ended in tragedy with the loss of our precious little cat Squirt, and I know that losing her has played a role in where I am now. To some it may sound silly (she was so much more than “just a cat”), but she was a part of my life every single day for nearly 14 years. It feels like the loss of an immediate family member, because that is exactly what it is. I think dealing with that loss, on top of everything else already mentioned, has made me do things like eat my emotions and talk myself out of doing fun active things.

Working out and exercising has always been like therapy to me. Be it gym, walking, running, or cycling, it’s a safe place for me to get out all of my stress, frustration, anger, aggression, sadness, and any other negative emotions that I’m dealing with. Some days I only need 30 minutes or so. Other days I might need a couple of hours. It also makes sure that I have a few minutes during normal human hours of the day that are just for me, Martin Wood, where I’m not making sure that the needs of everyone else are being met.

It’s my career choice to help people, and it is a major part of who I am, and I love it, but sometimes in order to help people we have to make the time to help ourselves. I haven’t been doing enough of that. Now that we are in a neighborhood where there is less chance of going for a walk or run and interrupting a drug deal, I finally feel that spark of motivation to get out of the house and move around.

I also enjoy doing other things, like reading, video games, movies, and basically anything that doesn’t involve repairing yet another kitchen appliance in my house. Sometimes it’s hard to make room for those things, but we have to. Down time is as necessary to life as to-do lists and full calendars. A friend said recently that “cancelling a holiday commitment is like heroin.” Try it. Substitute an evening on the couch with the dog and the first half of this season of The Walking Dead. (Beth…noooooo!!!)

Life with diabetes is freaking hard, man. Life with diabetes is about so much more than just diabetes. Life with diabetes is a complicated balance of biometrics, medical therapies, activities, unexpected events, important considerations, random emotions, bright sides, dark places, and things left unsaid that have to be factored into an inarticulate equation that hopefully results in a personal definition of success.

All of this is what it takes to get my A1C where I want it, to get my BG’s on a more level plain instead of high or bouncing all over the place, to get back to Weight Watchers and better control of all of the delicious things that I’ve been cramming into my face hole, to develop the strength and stamina to avoid future injuries, and to drop some pounds and be able to haul ass without it taking two trips. That is what it takes to focus more on the things that I do have in my world that bring joy, for me, Martin Wood. Like these two…

That is what it takes to start to feel better. To feel happy. To feel able. To feel normal. And if I can’t do it on my own, then I’ll have to figure out who the right people are and get them on my bus to help me get further along down that road. For now, it’s one mile at a time.

–MW

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.

Team Type 1 and Life With Diabetes

Friends For Life is not just for children with diabetes. It isn’t just for adults with diabetes. It is also for parents, grandparents, siblings, significant others, and friends of people with diabetes. Friends For Life is for those who need hope, who need help, and who need reassurance that anything is possible for people with diabetes, whether they themselves have diabetes or not.

Phil Southerland, founder of Team Type 1, lives to prove that anything is possible with diabetes. I’ve seen the presentation of the story of Team Type 1 several times, but Friends For Life was the first time that I’ve seen it directed to parents and caregivers of children with diabetes.

Phil started by introducing himself, and sharing the story of how he and his mom dealt with the reality of the diagnosis of Type 1 diabetes when he was a small child. I can relate to Phil’s story, as I was diagnosed at about the same time he was. I was two years old when I was diagnosed, and though doctors tried to fill my parents with hope that a cure was on the way, the reality of the diagnosis at that time, and for me at such a young age, was not as optimistic as it is today.

But Phil and I both made it, and we got to experience the Team Type 1 session at Friends For Life 2012 with one of us on stage, and the other (me) out in the audience observing how parents with the same diagnosis as our parents received about us were trying to figure everything out.

I was so happy to see the room full of orange bracelets (worn by those without diabetes). Friends For Life is ultimately a Children With Diabetes conference, and with the exception of an Adult T1 Track, it is geared primarily to children and their caregivers. For this session, I was actually the one in the room that wasn’t where I was supposed to be. Not really a surprise, as I’m rarely where I’m supposed to be, but still, it thrilled me to see so many parents who were interested in learning that their kids can do ANYTHING with diabetes.

Several of the parents in the room had specific questions for Phil about how to manage their child’s diabetes in various situations, such as while swimming, playing soccer, and other sporty situations. Something I see often with parents, especially those parents whose child is recently diagnosed, is that they want black and white, straightforward, no argument answers about how to deal with some aspect of their child’s diabetes. They don’t want it to be as “bad” as it is.

The truth of the matter is that diabetes is not black & white. It is gray, purple, green, yellow, and every other color of the rainbow. Although it has its tough days, living with diabetes is one of the best things that ever happened to me. If you ask Phil, he will tell you the same. With diabetes, you have to really know your body, pay attention to it, and as a result many people with diabetes (PWDs) are as healthy or healthier than a lot of people without diabetes. I find a lot of strength in that.

The specifics of diabetes varies for every single person. Honeymoon periods (the period of time for some recently diagnosed Type 1 diabetics where their body is still producing small amounts of insulin, which typically decreases as time goes by) last for weeks, or months. Low blood sugar symptoms show up at a BG (blood glucose level) of 110 mg/dl or 45 mg/dl, and sometimes not at all. Every single person with diabetes varies.

Phil’s best advice to the parents, and something I agree with him 100% on, is to let children become the CEO of their own body. Keep focused, but learn and let children learn from their diabetes successes and mistakes. Blame does not breed learning.

If your child has a low blood sugar, it’s not your fault, and it’s not their fault. If your child has a high blood sugar, it’s not your fault either, nor is it their fault. The same applies if you have Type 1 diabetes yourself. That is diabetes, and over three decades of living well with diabetes has taught me that it is critical to remove the emotion from diabetes numbers, such as blood sugar levels and A1C values.

It’s just data, and it isn’t telling you that you are doing it right or doing it wrong. Only a human can assign emotion to math. A blood glucose meter cannot do that. Take diabetes data with the same face value as a road sign or a traffic light: It is a cue that some sort of action needs to take place, whether that action is to make an adjustment, stop, proceed with caution, or keep going and you’re doing great!

The next time your child comes home from school, resist the urge to immediately ask them what their last BG reading was, or how they are feeling, if they need a snack, or how many carbs did they eat for lunch. Instead, ask them to tell you about the most exciting thing to happen to them that day. You may be surprised to learn that diabetes is not the most exciting part of their world, so don’t make it the most exciting part of your world either (unless you’re at Friends For Life).

Life comes first.

2012 Goals & Resolutions

Last year I put together a post of some of the things that I wanted to accomplish in 2011. My first goal was to get my A1C under 6.2. At my last three endo visits, my A1C was 5.6, 5.7, and 5.6. Goal achieved, sort of, but with that low A1C came a couple of dangerous lows. Those A1C’s don’t make me a “good diabetic” anymore than those dangerous lows make me a “bad diabetic.” It’s just proof that an ideal number goal that signifies that diabetes is in good control is also very close to the edge of a low blood sugar disaster.

I made a resolution last year to wear my CGM more regularly. I did mostly, yet those two aforementioned lows both outran my CGM’s ability to predict the low blood sugar in time for me to fix the problem myself. During the first low, my CGM started beeping while A-Flizzle was feeding me glucose tabs. (See also: This CGM technology stuff has got to improve if we ever hope to see a closed-loop artificial pancreas in reality.) Unfortunately, due to expired sensors, supply refill woes, and now a CGM transmitter that is no longer transmitting, I’ve been without my CGM for 2-3 months, and I can definitely tell because my BG’s are all over the place. Like that sweaty 35 this morning, followed by a headache inducing 237 at dinner tonight. I’m concerned about my next A1C, but I know that it is just data, and I know that I’m struggling, and I’m just going to put my faith in my endo, my CDE, and myself to work together and turn this beat around. Diabetes is hard enough. Why beat myself up about it?

My #2 and #3 goals were really all about exercise, and if I look at them explicitly, I failed them both. I did not run a 5K, nor did I find a group to start cycling with on a regular basis. I did, however, discover the joys of spin class, so I’m chalking those up as a sort of win.

One goal I had that I’m extremely disappointed about not achieving is to get down to a stable 165 lbs. The first half of this year I did phenomenal at losing some weight, eating low carb, getting some exercise in, and really feeling like I was on my way to a more fit me. Then I had that low BG seizure at the beginning of July, where I chewed up my tongue and could only eat really soft, bland, room temperature foods for about 2-3 weeks, and that sunk my battleship. I was traveling at the time, so I resorted to eating total garbage like macaroni and cheese, soft cookies, potatoes, and starchy things that I had done so well at resisting in the first half of 2011. Now, here at the beginning of 2012, I’m right back to where I started, maybe even a little heavier. I have some new weight-related goals in mind though, so rather than throwing myself a pity party, I’m going to try a healthy helping of encouragement instead.

Another resolution I had was to go to the ophthalmologist. I’ve written about this experience, but suffice it to say that I did indeed go, and I got my card the other day reminding me to make a new appointment, and it isn’t something I’m as afraid of as much as I once was. I’m calling that an accomplishment.

Other goals and resolutions involved having adventures, paying off some bills, getting diabetes stuff that I needed (like a new medical ID bracelet), and remembering that even though diabetes is ever present, it isn’t the only thing that is important in life. All of those things I can mostly say I succeeded at, and am not opposed to carrying those ideals forward in the new year.

So without further ado, I present my 2012 goals and resolutions.

Goals
1. A1C <= 6.2. Less would be good.
2. Pay off at least two debts.
3. Have an adventure…regularly. Take pictures. (I really can’t emphasize this one enough. It’s a MUST!)
4. NEW for 2012: Drop some heft. Goal weight, 175 lbs. I will re-evaluate once this goal is achieved.
5. NEW for 2012: Complete an urban disturbance/warrior 5K, where you climb walls, jump fire, wade through mud, etc. I don’t know the exact name of these types of races. I just know I want to do one.
6. NEW for 2012: I will have a pool nearby this year, so I’m going to start swimming again. I miss it bunches. Plus, I need to get my bikini body ready for…*cough*…nevermind. Nothing to see here. Move along people.
7. NEW for 2012: Be successful with at least one big thing for diabetes advocacy. Measure of success to be determined based on specifics of the diabetes advocacy activity. That should leave me plenty of room to cause trouble.

Resolutions
1. Wear CGM consistently.
2. NEW for 2012: Find and go to the dentist, in addition to endo and ophthalmologist.
3. NEW for 2012: Exercise at least 3 days a week, even if work, blogging, and rest have to be sacrificed in order to do so. This will help my strength, energy level, blood sugar stability, and entertainment value while strutting around without clothes on.
4. NEW for 2012: Blog consistently, but only if it meets self-imposed quality standards. Or includes a good laugh. Or both.
5. NEW for 2012: Stop letting other people dictate my emotions. Their Jedi mind tricks are no good here.

Yeah…that’s a good start.

Best Of: Oh, The Places You’ll Go Low!

National Health Blog Post Month, Day 19: “Best of” post. Grab a post from your archives and repost it! Add a few sentences at the beginning to frame it. Why you chose it. Why you liked it. And why it should be shared again.

In May of this year, during Dblog Week, participants were encouraged to write a letter to someone about their diabetes. I chose to address my concerns from myself as an adult to myself as a child with diabetes. I was diagnosed at age two, so I’ve never really known a life without diabetes. I don’t have a before and after perspective, or memories of my diagnosis, or stories of transition. Based on my memories alone, I have always been a person with diabetes.

Still, diabetes has a lot of unknowns. In all of my years with diabetes, I have learned so much that was never shared by a doctor or a nurse, because so much of what we know about diabetes comes from living with it day in and day out. I wanted to share a story that I could understand, as a child, and appreciate throughout my life and years as an adult with diabetes. So I picked one of my favorites, and gave it a twist…

(Click to read…)

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

The Plus Factor

National Health Blog Post Month, Day 13: Open a book. Point to a page. Free write for 10-15 minutes on that word or passage. Post without editing if you can!

Presently I’m in the midst of a couple of books, magazines, and academic journals at one time. That might actually explain why I am such a slow reader these days. My reading adventures are as varied and overbooked as my daily schedule. The top book that I’m reading at the moment and getting the most joy out of is “How to Be Like Walt: Capturing the Disney Magic Every Day of Your Life” by Pat Williams.

I am presently about halfway through the book, and I absolutely love it. I have deliberately taken my time with this book, savoring it in small portions, because it is a joy to read and I find it so interesting. It chronicles the life of Walt Disney, both from the personal perspective of Walt, but also by the people that he worked with and inspired throughout his life. I’m a fan of Walt Disney to begin with, but I really appreciate the details and stories surrounding Walt’s life, ideas, and inspiration.

You can find something interesting and thought provoking on just about any page in the book you turn to. I can’t say that about most books I read. To honor the spirit of this blog prompt, I opened the book up and turned to page 154, to a section titled “The plus factor.”

Sometime in the 1940’s Walt Disney coined the term “plussing,” a verb meant to give people more than they expect.

Sometimes we get in the habit of only giving people what they expect, and not much more than that. I don’t think we do it intentionally, but we just get accustomed to a certain level of performance and we ride that wave for as long as we possibly can, until events force us to swim back out and seek the next big swell.

I think of my life with diabetes, and how sometimes I don’t want to do the work required to exceed the expectations of myself (which are impossibly high), my endo, or my CDE. I do only enough to get by, and hope that I get a lucky roll of the dice when it comes to my weight, my A1C, or my blood sugar graphs.

Walt would say that sort of behavior is ludicrous, and won’t ever allow me to grow and be my best. I don’t have to be perfect, but “plussing” is saying that I can always do just a little bit more in an effort to exceed expectations, even if those expectations are my own.

Walt was never satisfied with “good enough,” and that is how our life with diabetes is a lot of the time. We always want to have a little bit better blood sugar numbers, a little bit lower A1C, a little bit less weight, a little more exercise, a little bit less carbs. So much of what we deal with is just data, but it’s hard not to assign emotions to all of those numbers, especially when those numbers keep us from achieving something that we want.

“Walt Disney was adamant about quality. He always found new ways to ‘plus the experience.’ He wanted to give people more than they anticipated.” – Dan Viets, Disney Historian and Coauthor, Walt Disney’s Missouri

Dare to plus your world. Even if you have to take a step backward to move forward, always aim for a bit better than where you are right now.

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

Monday Motivation

National Health Blog Post Month, Day 7: Case of the Mondays. Write about something that gets you down, burns you out, or makes you sad. Purge it in a blog post. Turn it around at the end. Tell Tuesday why you’re ready for it.

Based on popular opinion (or at least the folks on my Twitter and Facebook feeds), most people are not fans of Monday. Color me odd, but I don’t mind Monday that much. After the weekend, I’m ready to get back to work and get things accomplished.

I like to feel productive. That doesn’t have a specific day of the week for me. Monday provides me with an opportunity to set the tone for the entire week, and get off to a good start. My intent is that by getting things rolling on Monday, the momentum will carry me through to Friday, when I can look back at my list o’ stuff and feel good that all or most of it is crossed off and completed.

Now, not every Monday is that big of a success. But neither is every Tuesday, Wednesday, Thursday, or Friday. I feel like if I spend my day on Sunday dreading tomorrow, then I don’t really have much choice but to have a sour Monday.

It helps me to set goals for my week. I need to feel that sense of accomplishment, like I’m doing something progressive, getting things done, and moving forward.

This week, for example, I’m going to try to wear my CGM all week long. I’m really having a difficult time wearing it lately. My slacking has resulted in me watching my BG’s tick upward (and I HATE being high with the fire of a thousand suns), along with my BG averages and probably my A1C too. I’ve had sensor errors galore, gushers, and now the few sensors I have left are expired, so I’m trying to get as much use out of them as I can before they all quit working and I have to throw the remainders in the garbage. I’ll get new ones on my next supply order, so I’m not overly concerned, just trying to make those diabetes supplies stretch.

I’m also going to go to spin class at least twice this week. Spin and the gym is yet another thing that I’ve been slacking on lately, and the way my clothes fit is bringing it more and more to the forefront (and waistline) of my attention. I’m not going to start the week saying that I’m going to go every single day. I won’t. Not yet. I need to ease back into it. Two or three 45 minute sessions of spin should be a great start to turning the beat around.

I’ve got some work things to do, and I’m sprinkling in some blog posting, spin classes, and CGM wearing to get my Monday started off right. What’s your Monday motivation?

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

Back On Track

188. That is the number that greeted me Saturday when I stepped on the scale to see just how bad things were. After making significant progress in losing some of my heft, making as much progress as getting down into the mid-170’s by June of this year, at the beginning of July I had a bad diabetes moment, and despite my intentions to throw myself back into exercise and eating low carb, I’ve really lost focus.

My clothes fit a little more tight than they used to, and certainly more tight than I want them to. I look at myself in the mirror and I’m not happy with what I see. I want to look and feel sexy, and make the mistake of asking my reflection for my phone number when I walk by. I need to get new clothes too, as most of my clothes are well worn, some even with holes in them. But I refuse to go buy them when I’m at a weight and size that I’m not happy with. I don’t want to buy the size clothes that I am. I want to buy the size clothes that I want to be.

I’m also tired all the time. I don’t really sleep that much, and when I do it is restless and dream filled. Part of that is because I’m stressed all the time. I feel like I have for more to do than I have time to do it, all the time. It’s not just work, or life at home, or people I need to see, or things I need to do. It’s just the culmination of everything. It’s as if I can never get enough accomplished, and despite my generally optimistic view of the world, lately I feel frustrated because I end every day with a list of things I didn’t get done.

My eating habits are just plain gross since July. When I had my seizure, I really chewed up my tongue and mouth. For two weeks I could only eat soft foods like macaroni and cheese, applesauce, soft cookies, breads, and sometimes soup if it wasn’t too hot. Because I could barely chew or move food around in my mouth with my tongue, it completely broke down my low carb routine that I had been sticking with and was doing so good at keeping up. Now, because my routine changed, I’ve gotten accustomed to foods that I can eat fast, because I don’t have a lot of time to stop and put together a meal that is healthy and good for me. Rather than a breakfast made of something in the 20 grams of carbs or less family, I end up grabbing the blueberry or banana nut muffin that is 58 grams of carbs, just because it is fast, easy, and available. Rather than opt for a healthy salad or protein heavy lunch and taking time to pause and use both hands to enjoy it, I end up with the carb loaded option that I can eat with one hand so I can continue working with the other.

Emotionally, because I feel so far off track, I’m not happy. Sure, I still have a good time with friends, when I can find the time to get to hang out with them at least. A-Flizzle and I still enjoy doing things together. It’s not a social unhappiness, but rather a disappointment in myself for putting back on nearly all of the weight that I was so proud of myself for losing in the first half of this year. I don’t like the way I look, and I don’t like the way I feel.

So, all that said, the first step is looking at the situation objectively and admitting that there is a problem. Now what?

I looked over my 2011 goals, and I still have a lot of work to do, but I’m not severely off track. I got my A1C down, I joined a gym and started taking spin classes to have a group of people to regularly pedal with, I paid off my insulin pump, I’ve gotten to have adventures in Washington D.C., New York, New Orleans, Tampa, Orlando, Jacksonville, and I celebrated 30 years with diabetes and jumped out of an airplane.

I still struggle with wearing my CGM every single day, I haven’t ran a 5K, I haven’t made it to the dentist yet this year, and obviously (given the topic of this blog post) I haven’t made it to my goal weight yet.

I’m making an effort to be transparent. I want others to know that diabetes isn’t easy, but there are other things in life with and without diabetes that are also challenging. I’m going to get back on track. Maybe it’s shallow, but I want to look in the mirror and like what I see, so much that I throw dollar bills at my reflection.

Starting yesterday, I’m back in the gym. My BG’s are better when I’m active and working out, my disposition is more positive, and in time it will all translate to a lower number on the scale and a higher number on the miles I can go on my bike and the things I can accomplish with my body. I have to make time to do this, for me, and I have to stick with it, stay motivated and encouraged, and share my progress. That means my friends on Twitter and Facebook get to endure my constant status updates about my gym adventures, how I’m in spin class, working on my core, flexing in front of the mirrors, and looking like a complete amateur with my weak self trying to bench press and look all hard in front of all the juice heads.

I may not accomplish every one of the goals I’ve set for 2011, but I’m okay with that. If you achieve every single goal you set, you’re not setting them high enough.

I will feel better about myself and my body. I will get back to liking what I see in the mirror, enough so that I sneak my reflection a high five or a wink when nobody else is looking.

Right now I’m telling myself, “Self! You can do this.” And I will too.

	Rick Phillips on I Lied
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	Heather Gabel on Diabetes as a Disability
	Martin on Diabetes as a Disability
	Heather Gabel on Diabetes as a Disability