endo

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.

Seeing Things

I’m finally learning to accept some things. Not everything, but some things.

For example, I’ve learned to accept that cooked carrots and mushrooms are disgusting and have no place on the food pyramid. Except maybe underneath the pyramid, as compost, to grow delicious things. Like fried chicken strip trees.

I’ve learned that my dog doesn’t really detect low blood sugars like I imagine he does in my low-brained head. He just likes spoonfuls of peanut butter at 3:30 in the morning. And who doesn’t love that?

A big thing that I’ve learned to accept (sort of…okay, not really) is that I get nervous when it comes to tests. Or things that I perceive as tests, like doctor visits. I don’t know why, but I always dread these appointments. In my head, they are the worst, even though 99% of the time they turn out just fine. It defies explanation.

As well as my life has been with diabetes, my imagination has a tendency to run wild and make things up that don’t necessarily reflect the reality of what I do everyday with diabetes. I think my anxiety is because diabetes is like a really crappy retirement plan: You make decisions based on data every single day in hopes that your annual account statement doesn’t show that you’ve invested all your efforts into a poop factory.

Earlier this week I went to the eye doctor, or more specifically, the ophthalmologist. This is where they check my eyeballs and retinas and all the tiny little veins and capillaries and doohickeys that keep them working to make sure that I have my diabetes in good control and that complications aren’t running rampant in my eyeball holes and causing irreparable damage to my vision and kidneys (which are connected to my eyeballs, somehow). I’m sure it’s a little more complicated than that, but that’s basically the big idea.

I was extremely nervous. Anxious. Full on shakytown while waiting to sign in. It didn’t help that the receptionist had a look on her face like she had just bitten into a piece of cat litter in her sandwich. She wasn’t rude by any means, just not exceptionally welcoming. In her defense, my appointment was at 1:00pm, and she was probably hungry. Plus, cat litter in your sandwich isn’t pleasant no matter how famished you are.

After I signed in, I barely had time to do a quick BG check before they called me back (it was 89, by the way…perfection). The nurse was super nice, but I could tell she hadn’t really been exposed to too many people with Type 1 diabetes before. We went through the standard form field questions for an eye doctor appointment: Height, weight, do you wear glasses, do you have any health problems, what kind of insulin do you use, what book are you going to try to read after we dilate your eyes, will you please put your phone away, did you just roll your eyes at me? You know, the usual.

I told her that my blood pressure was probably a little high because I was very nervous. It was, and wasn’t a big deal at all. She said, very friendly-like, “You should be used to this for as long as you have had diabetes.” I just smiled and laughed. Truth is, I’ve never gotten used to it. I don’t think I ever will.

The biggest disconnect was when she asked, “What was your blood sugar this morning?” I fumbled for an answer. That was at least three checks ago. I don’t remember that kind of information. That’s what BG meters and insulin pumps are for. I have more important questions to answer from my short term memory. Like, where did I park my car? What pocket is my cell phone in? How did I think these clothes matched this morning when I got dressed? I told her what my last BG was, and just went with that. One BG on my patient chart out of all the data points that I depend on every day to keep myself alive really makes zero difference in the grand scheme of things.

So we got through the formalities, and then I met with my ophthalmologist. Through all of the anxiety and nervousness, the experience was rather uneventful, which is a good thing. Bottom line, my eyes look the same as they did when I saw my ophthalmologist two years ago. Very microscopic evidence of having had Type 1 diabetes for almost 32 years, but nothing at all to be worried about. No blood vessels bleeding into the back of my eyes. No kidneys waving white flags of surrender. All in all, a clean bill of health, and a free joke about me being the oldest “kid” that my pediatric endocrinologist still sees on a regular basis.

I’ll take it. Growing up is overrated anyway.

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.

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

Growing The DOC

National Health Blog Post Month, Day 10: The future of online activism. Our favorite social media sites are constantly undergoing renovations to become quicker to navigate, easier to interact with, all encompassing, mobile, and everywhere. Imagine the same thing about your community – how will they evolve, improve, and grow?

The Diabetes Online Community (DOC) is growing. People with diabetes (PWD’s) are discovering that there are other people out there in the world and on the internet just like them, who know what they are going through, and who deal with the same things day in and day out.

According to the World Health Organization, in August of 2011 there were 346 million people worldwide who have diabetes. Most of those 346 million people have never even heard of a diabetes community, much less a community that is online, worldwide, and accessible at any time, day or night.

Last week there were 111 people involved in the weekly Diabetes Social Media Advocacy (#DSMA) Twitter chat. That is 111 people who either have diabetes or who live with and love someone who does. For every one of them there are millions more who are living with diabetes alone, with no support, no encouragement, and nobody to turn to who truly understands the daily pricking, poking, counting, injecting, and correcting adventure that is life with diabetes.

DSMA is not everyone in the diabetes online community, by far. There are a host of diabetes online gateways and communication forums, including Juvenation, Children With Diabetes, TuDiabetes, dLife, Diabetes Daily, and ACT1 Diabetes, just to name a few. (If you know of other online communities for PWD’s, please share them in the comments below.)

The point is that we, as a diabetes community, have a lot of room to grow. So far we’ve really grown organically, and often accidentally. Someone may be searching for something about diabetes and spot a link to a diabetes blog. From that blog they may find references to other blogs, different types of information, and maybe even reach out to an online community with questions.

Healthcare professionals need to better recognize that patient advocacy and support is not going to go away, and that it is not a bad thing, and encourage patients to get more involved with the online communities that are there for them. From those that I’ve talked to, the overwhelming majority of doctors do not like their patients getting information online relating to their health condition. Most doctors would prefer that a patient contact them directly for support. Meanwhile, these same doctors go to great lengths to remain incommunicado, often having an unlisted personal phone number, not sharing their email address, staying off of Facebook, and forwarding patient calls to voicemail instead of a real live human being after hours.

If you, as a doctor, expect your patients to look to you to be their primary contact for questions, then you must be available 24/7 just like the online communities are. Otherwise, change your expectations, because patients are not going to stop looking for the information and support that they need to live with their chronic condition.

I realize that doctors are cautious about patients contacting other people who do not know their medical history and asking clinical questions. It’s a valid concern, but it doesn’t cover the whole picture of what it is like sharing a world 24/7 with diabetes.

The Diabetes Online Community is about LIVING with diabetes. Our doctors and healthcare professionals play a critical role in our living with diabetes, but they are supporting cast. We, the people WITH diabetes, are the stars of the show. Doctors need to make sure that the patient views them as part of the solution, a partner, not some overbearing dictator of their health.

Diabetes is a chronic illness that requires people to manage almost all aspects of their disease independent of a physician’s watchful eye. We look to our endocrinologist, CDE, or primary care physician for overall guidance, but ultimately we are the ones taking action on all of the diabetes decisions we have to make on a daily basis. Nobody calls their doctor every single time they need to inject insulin. We educate, we calculate, and we dose accordingly.

The diabetes online community also provides something else that most doctors simply can’t, and that is time for the emotional side of the disease. We take time to get to know each other, and bond. Diabetes is an incredibly emotional disease, and the online community is more capable of providing support and encouragement and understanding at the point of need than any doctor’s office can, because those in the community deal with the same emotional triggers day in and day out.

If there is anything that I have learned about diabetes in my 30+ years with it, it is this: The only diabetes quick fix is glucose when you’re low. Everything else takes time, patience, and deliberate action to make it better. Having a community of people available who understands is the difference between thriving with diabetes and simply surviving with it.

Photo by C.

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

This is also my belated post for dblog day 2011: http://diabetestalkfest.com/blog/?p=461

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.

Prendojitters

I’ve got the Prendojitters, and maybe even a new entry to the Diabetes Terms of Endearment. You’ve probably contracted the Prendojitters before too, but you just didn’t know what to call this particular collection of symptoms. The Prendojitters are a collection of nerves, angst, and apprehension that you get before an upcoming endocrinologist appointment. Thus, pre-endo-jitters…Prendojitters.

It takes a couple of weeks for the Prendojitters to fully present themselves. They start with a mild case of reflection. You look back at the last few months of your life with diabetes and start to examine and evaluate how well you have been taking care of things. No matter how well your diabetes has been managed, if you’re anything like me, you’re probably overly critical of yourself. Maybe you haven’t done as many BG checks as you should have. Maybe you haven’t been wearing your CGM sensor around the clock like you had planned to do when you went into debt to buy the thing. Maybe you’ve let a few too many desserts invade your sensible diet, derailing your weight loss efforts and sabotaging your summer beach body.

Once you’ve given all these self-defeating thoughts a breath of existence, your case of Prendojitters progresses to the next level. You can diagnose yourself with stage two of the Prendojitters when you find yourself unceremoniously scrutinizing data. You compare your weight at your last doctor appointment with what that lying bastard of a scale in your bathroom is telling you now. You look at that last A1C and marvel at how good or bad it was, and go to work convincing yourself that this next one is going to be far worse and even less explainable. You look at your daily carb counts and exercise efforts from the logs you’ve been keeping (Right? Riiiiiight.) and settle on the data driven fact that you’ve been having too much of the former and not near enough of the latter.

In a blink, your Prendojitters progress to stage three, the third and final stage before intervention is scheduled to occur. Now you are at full alert to everything that is going into your mouth, every fingerprick and blood drop squeezed, every unit of insulin entering your subcutaneous layer, and every BG altering activity that you might be engaged in. The anxiety of the upcoming visit with your endo has sculpted you into a well-oiled diabetes managing machine.

Unfortunately, it is going to have little to no effect on your weight, A1C, cholesterol, or chances of winning the lottery, because your appointment is tomorrow morning and you’ve just caught on to what you should have been doing all along. So what do you do?

You finally relax a little in the blissfulness of seemingly defeat. You go see the endo, and then realize that things aren’t quite as bad as you worked yourself up to believing. Your endo is on your side, and he gets it: Diabetes is a lot of work to keep up with, and not every progress report is necessarily going to be all sunshine and daffodils with flying unicorns that poop sprinkles and sneeze glitter onto carbohydrate free cupcakes.

And just like that your Prendojitters are cured…until next time.

	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