Letter to a Diabetic

I was recently contacted by a young woman who has diabetes, looking for information about how to live healthier and happier, in other words, as a Liveabetic. But note, a Liveabetic can be ANYONE, not just diabetics! So whether you are diabetic or not, read on because there are some good nuggets here. That said, hopefully the "Know This" points will give diabetics jump forward in their day-to-day care.

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First a bit of quick history about my diabetes:
I was originally diagnosed as “pre-diabetic.” This progressed to a diagnosis of “Type 2”. Then eventually to a non-diagnosis of “you have an interesting presentation of diabetes” in January.

From late summer 2009 to January of 2010 my diabetes went from being manageable with diet, exercise, and oral medication (Metformin 500mg 3x daily at meals) to increasingly elevated glucose levels (eventually over 200) that remained high regardless of how carb controlled I ate, how disciplined I was at taking my medication, or how much I exercised. I was trying to do P90X at the time (an extreme home exercise program) and the workouts which originally lowered my glucose level resulted in extremely high levels near 300 and over. I became frustrated, and nearly apathetic about my care – especially since I had seen my primary physician about the issue and was told to “eat more carbs in the morning and less in the afternoon and evening.” I asked him if there was a diabetic specialist, nutritionist, or any classes locally where I could get more help, but he didn’t know of any.

Missy researched and found a Joslin Diabetes Center located at UC Irvine, about 15 minutes from where I live. Associated with Harvard Medical, they are one of the premier spots for diabetes management (as in day-to-day care, not “doc I have a boo boo), and are the only one located in California. How lucky is that? My mom (also diabetic in case you didn’t know) is jealous and always curious about what I learn from them to help her care.

Why is all this relevant?
The first thing you MUST know about your diabetes is that it will change over time. As you age, as your metabolism changes, as your pancreas or insulin resistance changes, as your lifestyle changes, so too will your diabetes change. I belabor this point, because nobody told me that, and I JUST figured it out (although I am overly dense in many instances – this being one).

KNOW THIS #1 YOUR DIABETES WILL CHANGE

So why all the weird diagnosis?
At my heaviest I got up to 203 pounds. Pictures of me at the time show a chubby desk surfer who worked too many hours with poor nutrition and no exercise. I’m not proud of that. Anyway, I think my doctor speculated that my diabetes was Type 2 because A) I was more than 10 pounds over my BMI which has a 50% increase for things like diabetes, and B) my mom is diabetic so it may run in the family.

Now that I’ve got some history, I can look back and see what was really going on. In some people the pancreas “putters out.” This happens gradually, and over time. In other words, I was never Type 2, which is better described as insulin resistant (I hate the terms Type 1 & Type 2). Late last summer my pancreas took a turn for the worse. It is still working, and through good diet, regular exercise, and diligent insulin treatment, my levels are phenomenal. But to my earlier point, my diabetes WILL change. I don’t know when or how, but I MUST look out for it.

KNOW THIS #2 YOU MUST LOOK OUT FOR YOUR DIABETES TO CHANGE

Be All About the ER
Before I knew I was diabetic I started changing things little by little. I’m all about the “ER”. Live healthER, eat bettER, or you’ll end up in the “ER”. (Catchy? I’ll make T-Shirts :-P) I won’t cite all the research that shows that incremental lifestyle change is sustainable more so than rapid dramatic change, but I’ve assumed this to be true. However, to be successful you need to A) have health goals you are trying to achieve, and B) track your progress.

Before my original diagnosis I had changed what I was eating, going from regular soda to diet. Not that diet soda is the BEST choice, but it IS healthER than the empty calories of regular. I started exercising in little bits. I wasn’t going to do a triathlon in my shape, but I was moving which was bettER than my 100% sedentary lifestyle. I created a program called “the credible threat”, where you take an embarrassing photo of yourself (I was dressed like George from Seinfeld in the infamous underwear couch pose – google it), tell 5 friends your goal by a date of your choice, select a sponsor who can validate your success or failure, and if you don’t make it all your friends get to see the picture. I gave myself 3 months to loose 10 pounds, Missy was my sponsor, and 5 of my work buddies were aware and eagerly waiting. I made it down to 180 pounds ahead of schedule, so my picture was never released.

About 6 weeks later I learned I was diabetic. I was frustrated because I felt like I had worked so hard, won the battles, lost the war. Now I know that weight was likely not the culprit, because my diabetes is due to my pancreas “puttering out” and not being 500 pounds of insulin resistant out-of-shapeness. But ultimately its about being your own advocate. YOU are responsible for trending toward being healthy or sick. So the question isn’t are you healthy, the question is “how are you trending?”

KNOW THIS #3 YOU ARE RESPONSIBLE FOR HOW YOU ARE TRENDING

So What Do You Do About It?
On a side note, I know there is a lot of stress, but few professions compare with the number of overweight, smoking, overworked, under-rested, and generally unhealthy lifestyles as the medical profession – especially nurses! Of course, this is anecdotal based solely on my own experience, so it may be unfounded. Even so, don’t let this happen to you, it isn’t worth it.

There are lots of people who go to their doctor, get a referral to an endocrinologist, take their meds and hope for the best. My insulin actually says “take between 5 and 10 units at meal time.” Good to know, except for the fact that this would kill me or leave me in a permanent diabetic coma. Here are some things I recommend:

Find a GREAT Endocrinologist
[note: if you are NOT diabetic, substitute "great doctor" or "great specialist specific to your condition" here]
You definitely SHOULD find a great endocrinologist. Do what it takes to find one, because you probably need meds now, and if you don’t, you WILL at some point. Remember, your diabetes WILL change, and you need a great diabetes specialist there when it happens.

KNOW THIS #4 YOU MUST FIND A GREAT ENDOCRINOLOGIST

Find a Diabetic Nutritionist
[note: if you are NOT diabetic, I would still recommend an appointment with a nutritionist. Understanding GOOD nutrition is not the same as good eating]
You definitely SHOULD find a nutritionist who specializes in diabetes. You need to learn about calories, carbs, offsets like proteins and fats, and how to manage portion size. But the BIG TAKEAWAY here is that generally speaking, you just need to eat a healthy nutritious diet, like any other person, non-diabetics included. Even though you are a nurse, you will learn things from a nutritionist.

KNOW THIS #5 YOU WILL BENEFIT FROM A DIABETIC NUTRITIONIST

Track What Your Body Is Doing
[note: this is relevant to non-diabetics as well. You may not need to track your blood glucose, but you might need to track your blood pressure, or something else. Understanding what your body is doing is HIGHLY RELEVANT for EVERYONE!]
Carbs are not the enemy. You know you need them for energy. Lack of carb control however is another thing. Pay attention to how many carbs you can handle. My meals are generally between 15g and 45g, or 1 to 3 carb units. I know my meal time adjustment of 1 unit insulin to 1 carb unit. However, unique to me, I can handle 1 carb unit if my glucose is between 100 and 150. Also, I subtract a unit if my blood glucose is under 100. At first there was a lot of information to figure out, and I had to learn how my body works. I did this by tracking all my daily information, and now I can tell you my average fasting bloods (between 100 and 110), my average meal time insulin (2 to 3 units), average daily long acting insulin (7 units), average exercise (currently zero minutes, but was 50 minutes daily as of a couple weeks ago), average sleep (7 hours), stress level (was about 2/10, but is up to 4/10 lately), and energy level (was 8/10, but now about 6/10).

Ouch, lots of number crunching there. I hope you don’t have an aversion to numbers, because you will be dealing with them more and more. On a positive note, my simple math computation skills are making black jack much easier, and I’m ready for my next vacation to Vegas!

My point here is that you need to track what is going on with your diet, exercise, medication, blood glucose, sleep, stress, and energy. There may be other things specific to you worth tracking as well. For example, cholesterol and high blood pressure, combined with high blood glucose form the trifecta for diabetics. I’m lucky to not have issues with cholesterol and blood pressure, but you never know, and since I know things will change, I track it as a method of monitoring. If you don’t track it, at least for a little while you WILL NOT KNOW what is going on with YOUR BODY. To point #3 above, YOU are responsible for how you are trending, but if you don’t know what your body is doing, you don’t know what to do to stay in the right direction.

KNOW THIS #6 IF YOU DON’T TRACK YOU DON’T KNOW HOW TO TREAT

Be Personally Accountable About Your Total Health
Unless you go in to an appointment and tell your doctor “doc, I’m tired all the time”, they will never ask you if you are getting enough sleep. Moreover, the ads for meds on TV that say “if proper diet and exercise are not enough, talk to your doctor about X” are somewhat misleading, because my guess is that MOST people do not exemplify a failure of proper diet and exercise (as a nurse you probably see a lot of this).

What does this mean for you as a diabetic? You need to be more vigilant than ever about your health. And I’m sure it will agree with your training that good nutrition, sleep, and stress reduction are all positive things for your health. Your doctor will treat illness, which is important and something I want when I’m dealing with whatever it is. Your endocrinologist will help you treat your diabetes. But YOU need to pick it up on these other fronts. I wish someone had told me this, but again, some of the most self-evident things are what we tend to miss. In other words, it is impossible to live poorly and expect medication and medical science to be the only things pulling you into balance, because that is a fix to a problem, not a sustainable day-to-day lifestyle.

This brings me to my tracking sheets again, and why I track all of that information. It is like I have a daily journal of how my body is operating. I print out my sheets, 3-hole punch them, put them in my binder, and record daily. I’m a little crazy, anal retentive, excessively organized, or whatever. That said, I HAVE NEVER HAD BETTER SUCCESS at managing my TOTAL HEALTH, than when I am tracking ALL of this information. At the end of the day I have a wonderful wife, beautiful daughter, and I have a responsibility to be healthy and live a long happy life with them. These are important things for you as well, being married and looking to start a family. Your health can’t be taken for granted, or handled lightly. You are a diabetic, which requires a serious commitment.

I have to say, I don’t know enough about your organization or discipline. I don’t know if keeping up on something like a daily tracking system is sustainable for you. I know that is asking a lot of my mom as well (but I can’t live without it). Even so, I’ve got her tracking, and will check in with her from time to time to do a week or two of tracking sheets. This exercise as an occasional reset can be fairly productive, and allow you to make course corrections. It also reinforces the self-accountability you will need.

KNOW THIS #7 PERSONAL ACCOUNTABILITY IS ESSENTIAL

You Are Absolved Of Your Sins
It always bugs me when I hear things like:

“Diabetes results from obesity.”
This is true, but not always true. I think it leads non-diabetics to think that getting diabetes is a result of living a crappy lifestyle. I thought this too, and believed I did it to myself. I carried some guilt about it for a long time. Bottom line is, whatever the cause of your diabetes, if you start trending healthier and make regular steps in that direction, forget the past and work forward. It’s the “every day is the first day of the rest of your life” attitude, so put a fist in the air and go kill it today!

“Diabetes can be managed with good diet, exercise, and medication.”
Also true. However, what is implied here is that if you are having issues with YOUR diabetes it is because YOU are sucking at YOUR treatment. I think it leads non-diabetics to believe that it isn’t a serious issue like cancer or Aids or you name it. Look you can loose toes, go blind, end up in a coma, oh yea and DIE. It’s a serious thing. And remember, your diabetes WILL change. So yea, take care of yourself with extreme vigilance. But know that when things go haywire it isn’t necessarily your fault. Its all about the response, and if you work to correct and trend healthier, then you aren’t just living with diabetes, you are a full on diabetic warrior!

“Diabetes can be cured by dropping the weight.”
I like The Biggest Loser. It motivates me. What can I say? But I always cringe when I hear these enormous people saying “I’m off of my diabetic medication, whoo hoo, I’m not diabetic anymore, I’m awesome and all you diabetics suck eggs because you haven’t lost 400 pounds like me and cured YOUR diabetes.” Ok, some of that may be implied, I’m just paraphrasing here. I guarantee you that they WILL be diabetic again. They might not be insulin resistant at this point, but their body has changed as a result of gaining so much weight. In time it will likely catch up with them, and they will once again be diabetic.

Good News About Pregnancy & Diabetes
This last point is particularly important since you are trying to start a family. Many women get prenatal diabetes. Often this goes away following birth, and the loss of pregnancy weight. But in most cases diabetes will return. It may be years, but it catches up. You already have diabetes and will need to deal with that through a pregnancy. But there is GOOD news here.

I like to think of diabetes as the bad guy in a horror movie. He always walks with slow lumbering steps, but no matter how fast the victims run they can’t escape. I’ve always been suspicious of their failure to get away, but I digress. Diabetes follows you around, slowly, creeping, persistent. It won’t go away. If you find out about it when you get pregnant you are dealing with everything from morning sickness, hormones, mood swings, hot flashes, and on and on depending on how easy or difficult your pregnancy is. Then on top of that you have to deal with learning and managing diabetes? UGH!

So the silver lining is that you already have diabetes, and can learn how to manage it BEFORE you get pregnant. I guarantee you, if your diabetes is managed well, your pregnancy WILL be better. Even if it is a difficult pregnancy, it will be easier than if your glucose levels are though the roof or crashing to lows!

Ah, but remember that your diabetes WILL change. So once again, I’m back to the tracking sheets and all the information you need to know in order to manage your diabetes. I would suspect that in preparation for becoming pregnant, this will be especially helpful, and once you are pregnant it will be essential.

What About Tracking With an App?
Yea, I’ve looked into that.

Missy found one called Track 3 (http://www.coheso.com/track-d.html) but it was for iPhone only – app store download here (http://itunes.apple.com/us/app/track3-diabetes-planner-carb/id318622618?mt=8).
I’ve got a blackberry, which isn’t supported by this app. Otherwise I would have tried it.
Also, while this app tracks meds, glucose, and carbs, it doesn’t account for my exercise, other nutritional requirements, sleep, stress, and so on. In other words, I like a more complete picture of my total health that isn’t supported in any app I’ve found.

If you look you will find apps for dieters that track calories and exercise. But I have similar issues with them. I’ve thought about building an app based on my worksheets, and know engineers that could help with the development. Even so, it will take investment to build so it is a nice dream for now. I’m a techie and the old pen and paper approach is workable for me for now. Such is life.

Hopefully All That Helps
Having diabetes sucks. It takes me longer to prepare food and eating out or without nutritional labels is difficult. When my blood is high I’m irritable. I have to carry a tester and insulin and food with me everywhere. [Insert more complaints here]

But what are you going to do? Life isn’t fair, and so you deal with it. Hopefully my data dump here gives you a jumpstart on things that took me years to learn. If I think of anything else I’ll send it over.

For my ongoing thoughts about health and diabetes I would also encourage you to read and follow my blog www.liveabetic.com. Liveabetics can be ANYONE committed to trending healthier, not just diabetics, but it is certainly a critical topic for us.

Ultimately your good health is the most important thing in your life. Without it you lose everything else, especially the time and quality of time you have with those you love – and quite frankly what else really matters?

Feel free to ask questions via email, but I would also encourage you to give me a call. I regularly talk through diabetes issues with my mom, and it helps inspire both of us to live healthiER.