A1C

OMG Scale

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.

OMG Scale

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.

We Are Broken

Getting Broken Things Fixed

I can feel it. It is slithering in like a snake through murky water. It makes little ripples as it moves in, just enough to sense it if you’re looking for it, but not enough to visibly disturb the peace and calm of everyday life. It is sneaky, resting still when you’re looking for it the hardest, hiding in plain sight. When you’re back is turned, it is busy, wrapping itself around everything that is good and dragging it under the surface, dominating.

It makes things heavy, without trying to lift anything. It makes my heart pound, even when I’m calm. It makes me want to cry, but the tears just won’t come. It makes me want to scream, but the effort is too great. It makes me want to fight, when I have nothing to fight about. It makes me forget hunger. It makes sleep something that I can only appreciate because I hear others talk about it.

It is awful.

It makes things awful.

It makes me feel awful.

After all my years with diabetes, it wasn’t until very recently that I learned that depression and diabetes go together like stink and manure. A quick Google search will tell you that depression from diabetes is due to the the daily stress of diabetes management. All the pricking and poking and stabbing and pinching and squeezing and dabbing and dripping and wiping and changing and checking and fixing and… Okay, I can certainly see how someone would get to that conclusion. Diabetes management is exhausting, and maybe that is part of the depression and diabetes picture, but it isn’t all of it.

Some sources say that it is the consequences of diabetes that drives depression. Things like nerve damage, loss of sight, loss of feeling in feet and hands, and weight gain all contribute to this sense of hopelessness. Having had diabetes for 30 years, I don’t subscribe to that. The consequences of diabetes certainly are nothing to shrug off, but I know many people with diabetes today, and those that do have diabetes complications definitely do not let those complications rule their lives. These are some of the most admirable people I know, who carry on in a daily pursuit of contributing to the world and helping other people. That is their focus, so no, I don’t subscribe to the “Oh, woe is me…” reason for depression when you have diabetes.

Sources even say that depression is the reason for depression with diabetes. No, that isn’t a typo or me repeating myself. Many sites, including the ADA, say that because of depression we slack on good diabetes care practices like regular blood glucose testing, eating right, routine exercise, and sometimes even insulin dosing. While slacking off due to depression our health declines, and then we feel bad about it, unintentionally making matters worse.

Something that doesn’t get reported enough is the science that also comes into play with depression and diabetes. In Will Dubois’s book “The Born-Again Diabetic,” he points out the often overlooked malfunction in the serotonin level production of people with diabetes, which can affect mood and cause depression. Will believes that all people with diabetes should be on anti-depression medications, and I’m starting to agree with him. Diabetes is hard enough without having to deal with feeling awful about it for no apparent reason.

The problem I have with depression, besides the general feeling of “blah” that comes with it, is that there is still such a taboo about it. I have a hard time admitting it to myself when I get depressed. Even now, I’m not certain that what I’m feeling is indeed depression. It could just be that I’m worn out from all the stresses of work, life, and responsibilities. Nevertheless, once I can admit to myself that I’m having a bout with depression, I start to blame myself for it. Maybe it is because I haven’t been taking as good of care with my diabetes as I could. Maybe I haven’t been making time to exercise as much as I should. Maybe I haven’t been eating as well, letting excessive carbohydrates creep into my diet more than I should. Never in all my maybe’s do I stop to say, “Maybe what I’m dealing with is something that has nothing at all to do with anything that I’ve done.”

I have felt it all day today. I’m upset, for no reason. I’m aggravated and annoyed, when I have absolutely nothing to be aggravated and annoyed about. I’m tired, yet I can’t rest. I’m not hungry, yet I haven’t had anything more than a pot of coffee today. I don’t know what is wrong with me. I just know I’m not me.

I have an endo appointment coming up in a couple of weeks, and perhaps I will ask him about it. But I probably won’t. As unrealistic as I know it is, there is a part of me that is afraid I’ll be judged as being weak because I can’t deal with things on my own; that I shouldn’t feel the way I do, and the way I feel is nobody’s fault but my own. I don’t want another prescription to pay for either, another pill to take, and another something to have to do on a daily basis. I’m also as stubborn as a mule, and I don’t want everyone trying to fix me and telling me what I need to do. I really don’t want anyone telling me what to do right now. (I know, I’m real mature like that. [sarcasm]) That sort of mentality is probably why the ADA says that depression begets depression. Writing this post took a tremendous amount of my courage, and I just don’t know if I have enough left to face depression (if that is even what this is) head on in the clinical setting.

I’m trying my best to get through this funk. As much patience as I need from others, I also need to be patient with myself when it comes to navigating my way through it all. I’m going to stop stressing over the fact that I can’t keep a CGM sensor on my body for more than 24 hours before it falls off, no matter what kind of sticky substance I put on or over it, and keep trying to find a solution that works. I’m not going to stress out over whatever my next A1C is going to be, and just focus on getting through diabetes one day at a time. I’m going to try to not carry around the guilt of low blood sugars that sometimes happen that I need help with. I’m going to start riding my bicycle again, because there is no room for all this baggage on the road bike, and it is really hard to have a bad day after you’ve started with a good bike ride in the morning. I’m going to get things that are broken fixed, so I can stop looking at broken things (like my TV, washing machine, and my old cruiser bicycle).

I’m going to do what I do best: Focus on the positive.

And somehow through all of this, I will get the most important broken thing of all fixed…me.

NYC D-Meetup

30 Years With Diabetes

Today’s Diabetes Blog Week topic is diabetes bloopers. You know, those things that make you go, “D’Oh!” and facepalm yourself. I’ve had my fair share of diabetes bloopers: Dropping & shattering glass vials of insulin, running off on trips without all of my diabetes supplies, forgetting to dose for a meal, forgetting that I already dosed for a meal, finding the cat playing with rogue pump tubing, catching the dog gnawing on a perfectly good tube of glucose tabs…the list goes on and on.

The blooper that is really on my mind today is the one that my pancreas made 30 years ago when it decided to quit working. Or maybe it was my immune system that decided to work too well. Or maybe it was because I had chicken pox. Or maybe it was because someone got me wet or fed me after midnight. Or maybe it was because a butterfly flapped its wings in China. 30 years after the fact there is so much more we know about diabetes, but what exactly causes it and how to cure it are still not on that list, despite what we were told about how close we were to a cure when we were diagnosed.

Today is a day of celebration, of blessings, thankfulness, and appreciation. I have learned more in my 30 years with diabetes than some people learn in a lifetime. Living with diabetes has taught me so much, and coupled with other life lessons, I would be remiss to not stop for just a moment and appreciate the gifts that I have been given…thanks to diabetes.

The 1st 10 Years

  • If you’re low, anytime is snacktime.
  • Bananas and peanut butter on vanilla wafers is the best snack in the world.
  • You can’t go play when you blood sugar is high. But if you can sneak away when your parents aren’t looking, it’s fair game. The back door doesn’t squeak and make noise like the other ones do.
  • Swimming always makes you go low.
  • Visiting the cute nurses on the Pediatric floor at the hospital when you’re there for lab work is always a treat. They know you by name.
  • When you hear the term “A1C” you think of steak sauce and hamburgers.
  • You don’t know anyone else with diabetes.

The Teenage Years

  • If you’re low, it’s a nuisance, and you have to stop what you’re doing and take a break to feed it. Not always ideal when you’re being paid hourly at a part-time job.
  • Whatever is fast and convenient is the best snack in the world.
  • You hardly notice when your blood sugar is high. Until it makes you feel awful. Then it is all you notice.
  • Swimming still makes you go low.
  • Visiting the cute nurses on the Pediatric floor at the hospital when you’re there for lab work is still a treat. Other floors are acceptable as well, as long as there are cute nurses. You know THEM by name.
  • When you hear the term “A1C,” you also hear words like “goal” and “lower.” Those cute nurses are a good distraction.
  • You’ve heard of other people with diabetes, but you still don’t know anyone that has it.

The Last Ten Years

  • If you’re low, your CGM alarms and you drop everything and treat it. Except when you have low-brain and can’t seem to focus. Then it becomes more of a struggle, and is sometimes followed by a hangLOWver.
  • Cheese, nuts, and other low carb foods are the best snacks in the world.
  • Because you are in better control of your diabetes, you can feel a high blood sugar in the upper 100’s now. 200+ makes you feel like dog’s ass.
  • Swimming still makes you go low, and now you have to replace a pump site when you get done because the sticky doesn’t stay stuck in the water. You are able to ride a bike for over 100 miles in one day. You’ve discovered OTHER activities that have the same effect as swimming on your BG’s, and are just as much fun.
  • Visiting the cute nurses, wherever you can find them, has become a rarity. Now you mostly settle for Helga, the former wrestler with the mustache and gallon sized syringe and harpoon needle to do your lab work. She knows you as a number.
  • When you hear the term “A1C,” you start thinking all about decimal pointed numbers like 5.6 and 6.5.
  • You meet an amazing community of people online and in real life who also have diabetes. You start a blog, and start sharing your life with diabetes. They inspire you.

The Next Ten Years

  • Your diabetes is tightly controlled, and you don’t have any of the complications that others who don’t take their diabetes seriously often suffer from.
  • You’re slim, fit, and eat right so that you’re able to do the things you love and experience the world. You look fantastic naked.
  • You accept that there will always be things that make you go low. You’re prepared for them, and never let diabetes keep you from being able to do anything that you set your mind to.
  • You have a family now, and your diabetes is not the center of the universe, but just a piece that helps explain your awesomeness during bedtime stories.
  • You vow to only have lab work done from cute nurses in the future. You have diabetes, so you deserve it.
  • Your doctor rarely mentions the term “A1C” anymore. He’s more interested in what awesome things you did in the last three months so that he has success stories to share with his other diabetes patients.
  • You continue to write about diabetes, speak about diabetes, advocate for diabetes research and better treatments, and share your world with diabetes. You challenge others to take control of their own diabetes, and cherish those stories of how you inspired someone else to save their own life.

Today, May 11, 2011 is my 30th Diaversary. Thank you all for being such an amazing part of it.

“You only live once, but if you do it right, once is enough.” — Mae West

 

NYC D-Meetup

Allison, Caroline, me, and Brenda at a May 2011 D-Meetup in New York City

Oh The Places You'll Go Low

Oh, The Places You’ll Go Low!

Thanks to a little help from Dr. Seuss, this is a story to me and so many others as a kiddo with diabetes.

Oh The Places You'll Go Low

Congratulations!
Today is your day.
You’re off to Great Places!
But you’re awake, and afraid!

You have low brains in your head.
You have sticky feet in your shoes.
You can’t seem to steer yourself any direction you choose.
You feel all alone. And you know what you know. And YOU need SOMEONE to know that you’re LOW!

You lay there in wet sheets. Thinking over with care. About next time you say, “I’ll remember to have glucose right there.” With your head full of low brains and your shoes full of sticky feet, you’re too clumsy to make it to the kitchen to eat.

And you may not find any snacks sitting around. In that case, of course, you’ll cry out and growl. It’s easier when stuff is right there.

Out there things can happen and frequently do to people just as low-brainy and sticky-footsy as you.

And when things start to happen, don’t worry. Don’t stew. Just go right along. And drink you some juice.

Oh! The Places You’ll Go Low!

You’ll be on your way up!
You’ll be doing alright!
You’ll do a quick blood test and everything will be fine.

You won’t be all shaky, because you’ll have what you need. You’ll keep up with the world and you’ll soon take the lead. Whatever you eat, you’ll dose it the best. Wherever you go, will be with less stress.

Except when you don’t.
Because, sometimes, you won’t.

I’m sorry to say so but, sadly, it’s true that birthday parties and pizza can happen to you.

You can get all hung up in a high blood sugar perch. Pause, and you’ll realize, you feel like you could lurch.

You’ll come down from the perch with an unpleasant tumble. And the chances are, then, that you’ll overdose and stumble.

And when you’re on the glucoaster, you’re not in for much fun. Un-stumbling yourself is not easily done.

You will come to a place where the guilt is so harsh. Diabetes is like that. It can get very dark. A place you could stay in and feel like you can’t win! Do you dare to stay out? Do you dare to go in? How much can you lose? How much can you win?

And if you go in, should you turn left or right…or right-and-three-quarters? Or, maybe, not quite? Or go around back and sneak in from behind? Simple it’s not, I’m afraid you will find, for a low-brained mind-maker-upper to make up his mind.

You can get so confused that you’ll start to race down long wiggled roads at a break-necking pace and grind on for miles across weirdish wild space, headed, I fear, toward a most useless place.

The Waiting Place…for people just waiting.

Waiting for a chance to go or a thought to come, or a sound to make or the cry to come, or the door to open or the phone to ring, or the light to come on or waiting around for a Mom or Dad or waiting for the world to slow. Everyone is just waiting.

Waiting for the apple to eat or waiting for juice to kick in or waiting around for the night when waiting will end, when low-brain will subside, and sanity will return, or you can stop focusing on things you must learn, or another chance. Everyone is just waiting.

No! That’s not for you!
Somehow you’ll escape all that waiting and staying. You’ll find the strength to rise up and stop praying. For one brief moment, you are strong! Ready for anything under the sky. Ready because you’re not ready to die!

Oh, the places you’ll go low! There is fun to be done! There are carbs to be scored. There are alarms to be silenced. And the magical things you can do with the DOC will make you the winning-est winner of all. Fame! You’ll be famous as famous can be, with the whole wide world watching you win an awesome A1C.

Except when they don’t. Because, sometimes, you won’t.

I’m afraid that some times you’ll play lonely games too. Games you can’t win ‘cause you’ll play against you.

All alone!
Whether you like it or not, alone will be something you’ll be quite a lot.

And when you’re alone, there’s a very good chance you’ll meet things that scare you right out of your pants. There are some, down the road between hither and yon, that can scare you so much you won’t want to go on.

But on you will go though the weather be foul. On you will go though diabetes may prowl. On you will go though the CGM howls. Onward up many a frightening creek, though your arms may get sore and your pump sites may leak. On and on you will hike. And I know you’ll hike far and face up to your problems whatever they are.

You’ll get mixed up, of course, as you already know. You’ll get mixed up with many strange birds as you go. So be sure when you step. Step with care and great tact and remember that life’s a Great Blood Sugar Balancing Act. Just never forget to be dexterous and deft. And never mix up your right sites with your left.

And will you succeed?
Yes! You will, indeed!
(You’ve got an army of people with diabetes who agree!)

Kid, you’ll move mountains!
So…be your name Martin or Jacquie or Kerri or Scott…you’re off to Great Places!
Today is your day!
No lows, no waiting.
So…get on your way!

Diabetes Acrostic

Diabetes Acrostic

The folks over at WEGO Health are hosting a Health Activist Writer’s Month Challenge (#HAWMC), prompting health activists and advocates to write prompted blog posts every day for the entire month of April. Typical me, I took a big ol’ bite, so here goes…

HAWMC Blog Challenge - Day 1

Today’s challenge is to “Write a health acrostic using your condition’s name.” So here is mine. Lee Ann Thill over at The Butter Compartment would be proud.

Diabetes Acrostic

Emergency Low Kit

5.6 Degrees of Frustration

I like reading about the experiences my friends in the DOC have when they go to their diabetes doctor appointments. Good experiences or bad, it teaches me a lot about what I want and need from my own endo, and things I should be thinking about.

For example, it’s no secret that diabetes and heart disease are BFF’s. Observing the thoughts and conversations that are shared in the DOC about statins, ACE inhibitors, blood pressure, cholesterol, and the effects on the heart of sticking your finger in electrical sockets makes me realize that I  don’t give this component of my life with diabetes near enough attention.

At my endo appointment last Friday, we talked about some of these things. No mention was made about my weight, but I know that I want to be lighter than I am. I’ve lost 7 pounds thus far with the switch to a low-carb lifestyle, and am making satisfactory progress toward my goals, so I have to take things one step at a time on that front.

My blood pressure was normal, so that was good. I’m not one of those folks that shoves an arm in the free cuff & fluff machines at the store, EVER, so if the endo says I’m good and it isn’t an issue right now, I’m taking that and rolling with it. He did order a full lab workup for my next visit, which should add all kinds of interesting new data points to talk about.

The results of the BIG test on Friday, that almighty diabetes report card mother of all tests, the A1C, took the wind out of my sails. I set a goal at the beginning of this year to get my A1C down to 6.2 or better. On Friday, my A1C was 5.6. I have never had an A1C in the 5’s before, so I should be celebrating that, and throwing myself a party. Instead, I feel like a failure.

Diabetes is a candle burning at both ends. You can monitor your BG’s closely, and stay as close to on top of everything as possible, but often when you focus too hard on one problem (too many highs) and fix that, you end up with another problem (too many lows). Diabetes doesn’t give very much room for error, and that frustrates me. Maintaining perfect blood sugar control is like trying to balance on a tight rope, hanging over a cliff, while juggling bowling pins and riding a unicycle. It’s possible, but good grief it requires a lot of attention!

I want to celebrate a 5.6 A1C. I want to upload my pump & BG data to my endo’s computer and see on the screen that I am an all-star diabetic, with nearly flat data charts with very few low or high BG’s. I want to EARN that 5.X A1C, and that is where I feel like I have failed. I did not earn my 5.6 on my terms. I have managed to keep from having very many high BG’s, but in turn I have had way too many lows, some dangerously low, and it leaves me screaming at my diabetes, “I just cannot win with you!” Then I throw a pot and pan at it, tell it to get out of my sight, and pour myself a big glass of Diet Coke and have a good cry while watching an ASPCA commercial. Don’t judge, you know you tear up too every time you see one of those commercials and those poor animals that need loving and adopting.

Friday was a bad day, but it progressively got better the more I digested that 5.6 A1C. It could be so much worse. That 5.6 could have come with severe low side effects, including occurrences of unconsciousness, seizures, ambulance trips to the Emergency Room, car accidents, or the inability to shut up while talking nonsense in front of a crowd of people. It could have resulted in the embarrassment of a low while at work and my coworkers having to help me. It could have included feelings of shame and inadequacy because I needed someone in a way that I can never repay.

My endo and I talked about what I have to treat a low. I have not had a Glucagon pen in…well, maybe not since I lived at home with my parents. That was 13 years ago. It wasn’t until this last year that I even kept a stock of glucose tabs. It’s really a wonder how I survived so many years without them. I did keep glucose gel, so I guess that is worth something, and keeps me from being a total bad diabetic. Now, however, I have an “Emergency Low Kit” so that I have as many weapons in my arsenal as possible to combat diabetes.

Emergency Low Kit

My "Emergency Low Kit" including Glucagon and glucose gel & tabs

I have settled on the fact that it is 100% okay for me to be frustrated with diabetes and an A1C of 5.6 that I don’t feel I earned by being an all-star diabetic. I have settled on the fact that I am going to be working closer with my CDE to adjust my basal rates so that I don’t have so many lows, and still avoid those highs as well. I have settled on the fact that there is no such thing as a perfect diabetic, but striving to be one may very well have played a part in keeping me alive and healthy all these years, and I don’t intend to stop now. I have settled on the fact that there are side effects to diabetes that I absolutely can control, and some that I cannot do a damn thing about.

Diabetes had just better get settled with the fact that I’m not going anywhere, and there is a good possibility that I am more stubborn than it could ever dream of being.

Stuart Smalley

Endo Affirmations

When I set my goals at the beginning of this year, #1 on my list was to get my A1C down to a 6.2 or better. That is a formidable goal, trying to achieve an average blood glucose over time of around 120, depending on what research you consult. At my last endo appointment back in December of last year, my A1C was still reasonable, but it had ticked upwards. I couldn’t let that upward trend continue.

I had gotten my Continuous Glucose Monitor (CGM) and new pump just after my previous appointment in September of last year, and with all the change, I was burnt out. Or maybe just overwhelmed. But really, is there a difference?

I was wearing my CGM intermittently, and was dealing with major information overload with all the beeping and pricking and checking and counting and pumping and beeping and…I was exhausted.

After I wrote my A1C down in my notes, and realized that I had allowed my control to slip in the short three months since my previous appointment, I knew that I had to turn the ship around. I don’t want my A1C to continually creep northward, and me pay for it with problems down the road. I have too much life and dreams ahead of me to get lax with my diabetes management.

So I sat myself down and gave myself a stern talking to. I said to myself, “Self, all is not lost. I want you to look in that mirror, and I want you to repeat after me. I can do better. I have some awesome tools to help me get to where I know I can be. I can wear my CGM all the time, and not take several days off between sensor changes. I can carry around glucose tabs right there in my little pocket to treat a low. I don’t have to be a great diabetic. All I have to do is be the best Martin I can be. Because I’m good enough, I’m smart enough, and doggone it, people like me.”

Stuart Smalley

Daily Affirmations with Stuart Smalley

 

I’m glad we had that talk. Since then, I’ve done really well with wearing my CGM. Every time the sensor battery runs out of juice, it hits the charger, and I’m already putting a new site in and getting everything ready for another round. I’ve gotten to where I really don’t enjoy being without my CGM, and am hoping that I didn’t do too much damage for all the years before now when amazing technology like this didn’t exist.

Lows are still creeping around occasionally, but they are manageable. Nothing a few glucose tabs can’t fix in a pinch. I expect my CDE and endo to want to make some adjustments, and I’m open to that. I’ve started a low-carb journey now, so I don’t expect that I need as much basal rate insulin at certain times of the day as I did with a diet heavier in starches.

Something else that I’m not happy with myself about is that I let myself get lazy, and stopped exercising the way I physically and mentally need to. The scale showed me the truth about that. So far I have lost six pounds, down to 184 lbs. It’s not a lot, but it’s progress, and that is the most important thing right now, to be moving forward. I’m making some big changes to my lifestyle to eat smarter and make better choices. I have my eye on my goal cycling weight, and to slim up and firm up so I look good naked, or at least in a swimsuit. Yes, I’m vain like that.

Back to the A1C, I know that we can’t base our entire diabetes report card on the A1C alone, but it still resonates with all of us where we are in our journey with diabetes when we see that number. I am confident about this upcoming appointment. I am determined. I have a plan. And it’s true, I don’t have to be the best diabetic. I just have to be the best Martin I can be. The rest will find its proper place.