Obsessive Compulsive Testing

My fingertips look like a detonated mine field.  Miniscule craters cover and distort the whorls of fingerprints in a disturbing image of the self-inflicted damage of diabetes.  They are emblematic of the irony of this disorder that forces you to harm yourself in order to maintain care.  Unfortunately, I am not daunted by this unfortunate consequence, quite the opposite.  I monitor away, with aplomb, in an almost obsessive manner.

The definition for obsessive-compulsive disorder is as follows: an anxiety disorder characterized by repeated intrusive thoughts and associated ritualized behaviors intended to alleviate that anxiety. www.neuropharm.co.uk/glossary.php When I began monitoring 19 years ago, my testing clearly fit the criteria.  In spite of the fact that my strips were not covered by health insurance, which meant my parents had to cough up $300+/month to cover the minimum, four, daily tests, I found reasons for performing more: feeling high or low or somewhere in between.  The root cause was truly one issue, uncertainty.  If you consider the definition above, this uncertainty was the source of my anxiety, and the testing a way to alleviate it.  I truly did feel a sense of order through the numbers, regardless of the results.  At least I knew where I stood, and that had to count for something.

My compulsiveness did wane during adolescence.  I became savvy about my overall disposition, and how it was a reflection to my glucose level.  I’d frequently play a game of “guess the test result” just to verify how in tune assumptions were.  Most often I was within close range, but in time, hormones raged, and coupled with my athletic endeavors, I lost my “sense of sugar level”.  Fortunately, my strips were now covered by insurance, allowing me to strike at will, and strike I did.

Which is very much the position I am in today.  One glance at my logbook reveals that I test, on average, 12-15 times daily.  On my “light” days, I’m checking around 8.  Apparently I’ve again found solace in the numbers, and need them to quell the anxiety roiling within.  As a husband, parent of two, full-time English teacher, and dedicated athlete, life is hectic.  I cannot afford to have large gaps of time where I am unaware of what my level is.  I need to know so that I can appropriately adopt, both physically and mentally, to whatever demand presents itself.  It is impossible to concentrate under the intrusive inner monologue: What’s my level?  Should I test?  I don’t know, I think I’m all right.  Should I test? Therefore, I bludgeon away, in a sacrifice to sanity.

Is all this testing healthy?  Am I truly obsessive compulsive?  Honestly, I don’t know.  All I am assured of is that it works.  Someday, maybe, I won’t feel so bound to know, so often.  Possibly I’ll get back in touch with my ability to sense my level.  Or most likely I’ll apply for a continuous blood glucose monitor.  As the adage goes: Insanity is defined by repeating the same action and expecting different results. I already know the results will be a mixed bag, but the comfort of knowing is always the same.

By the Numbers

Here’s my Thanksgiving in its bare bones, the story of one holiday and the glucose readings that marred it.

I woke up at 8am and tested, 105 mg/dl. Excellent. I ate a light breakfast prior to my workout, with just enough carbohydrate to cover for the exercise. I burned through and waited a half hour post-workout to test again, 170 mg/dl. What? I chalked it up to the atypical hour for my physical endeavor, bolused a unit and then went about getting my children ready to leave for my aunt’s.

I tested, again, for the first pre-meal, 125 mg/dl. Excellent. All seemed back in line and I had no concerns about diving in. Which I did with gusto and yet a nagging reminder that I had to repeat the scenario in a few hours with the in-laws. I enjoyed the meal, nonetheless, was thankful for the company, and then was soon on my way.

We arrived at my wife’s aunt’s house and I did what any mindful person with diabetes would, I tested. 307 mg/dl. Excuse me? I stood in the bathroom and stared at the screen and wondered where I’d miscalculated. After 19 years with this disease I’m adroit at carb counting, even for pumpkin pie, but obviously I’d missed something. I bolused four units and anxiety settled in. How was I going to eat another meal in less than an hour? I pulled myself together and joined the conversation in the family room. Sitting on the couch, however, brought a pain to my side. I lifted my shirt to investigate my infusion site and it appeared purple.

I promptly got up, grabbed an infusion set from the car and went back to the bathroom. I inserted the new site before dislodging the old. Beneath the tape my suspicion was confirmed, a circular, purplish/green bruise that oozed a viscous droplet of blood sat as an ominous warning. I wondered about the insulin I’d just injected. Had it made it past this disgusting barrier? I filled the new cannula and hoped for the best.

I kept the carb count low on the second meal, biding my time and allowing my body to absorb whatever insulin it could before I hit it with dessert. And hit it I did, with another four units to cover the cheesecake and pumpkin tart. I felt bloated and swollen and not even close to hormonally balanced.

An hour later, I tested. 66mg/dl. No! I ate some zucchini bread and figured I would be fine. An hour later, now at home with my children running around I tested again, 44 mg/dl. I didn’t even want to fill my mouth with the air I was breathing, let alone stuff it with another sugar-loaded treat, but I did, and in an hour I was…56 mg/dl.

At this point I went against all regulations. I did nothing. I put my pajamas on, told my wife my glucose level and went to bed. I hoped that my body would mend itself. Yes, it was unwise, but I was out of patience with my body, and it was time it took care of itself.

I woke up on Black Friday and tested, 276 mg/dl. So it goes. I bolused and skipped breakfast and started the day anew. Was it the Thanksgiving I wanted? No. The numbers don’t lie. It was not a day of tight control. But one day in 365, or in my case, 4,380, doesn’t make much of a difference. But I do hope next year is better, that I’m more controlled, either in my eating or my calculations. If so, for that I will be thankful.

Thankful for the Contradiction

                                                     Undoubtedly there is a plethora of advice about how to enjoy Thanksgiving while having diabetes. I am not going to offer any such advice. Instead, I will suggest that we with type 1 be thankful for insulin.

Plain and simple, we’d be dead if it weren’t for the discovery by Frederick Grant Banting. That’s stark, and I mean it to be. Thanksgiving should represent a time for taking stock and regaining perspective, and not solely a meal where overindulgence is the goal. Therefore, when we sit at the table and pile on too much, or too little, skip dessert or taste all five, we should first give a silent thanks to the man who gave us the option and gave us our lives.

I believe that Dr. Banting would suggest that we do not feel guilt over our meal, that we do not feel shame. That we simply enjoy, in whatever way works for us. He didn’t work so diligently so that we should feel ostracized in our own skin. There is no reason to apologize for this disease, no reason to care what the relative across the table from you is thinking about your food choices. You live with this disorder day in and day out. No one else can do that for you. Therefore, allow yourself a day to be thankful that we have science and medicine that have provided us more than was ever thought possible before 1931.

I contradict myself. I am offering advice. So be it. We are unique and we are the same. This disease has so many common features that we fight alone and on teams. We are forever in it together, even though we are always separate. Be thankful for that. And revel in the immortal words of Whitman:

“Do I contradict myself?
Very well then I contradict myself,
(I am large, I contain multitudes.)…”

 ”I celebrate myself, and sing myself.”

                                     Walt Whitman, Song of Myself, 1855

Good Enough

I was recently asked if I had experienced a “good” childhood. I didn’t know how to respond because my first instinct was to laugh, and that would have been grossly inappropriate. Yet, so was the question, because it is impossible for me, or for anyone with a chronic illness acquired in childhood, to answer honestly. I don’t believe anyone wants to hear the truth: No, because I don’t know how to define “good”.

Growing up with type 1 has meant a series of good and bad days, many tied to blood glucose levels, many, however, not at all. When my diabetes management was under control I was free to focus on other elements of my life, to be a child, which was certainly good. I do not have statistics that indicate the percentage of these days, but that doesn’t really matter. Memory, as I’ve written about previously, has a way of figuring its own statistics.

“Good” for me could also mean something vastly different than for someone else. I had it good in the sense that my mother was a nurse, which made figuring out this illness much easier. However, I have met children with diabetes whose parents are nurses or Certified diabetes Educators or doctors, and they feel smothered, as if who they are as a person has been lost to the label of a disease. They are primarily “patient” and a problem to be solved. I see no good in that.

I believe it boils down to perspective, as I think almost everything in life does. Currently our economy is failing, people are at their wits’ end, and yet, research indicates that society feels somehow better at being relieved to no longer participate in the rat race. When you have diabetes you are always in the race. As the adage goes, “There are no days off.” But we can all make the best of each day, for good or bad, regardless of complications or blood sugar fluctuation. This is life, yes our unique life. But life, inherently, is good.

Memories like stones

Certain segments of life take precedent over others. It only makes sense that we remember the life-altering events over the mundane. We like to return to  the good: birthdays, weddings, holidays. These fragments remind us of how wonderful life has been, and hopefully, how good it will again be.

However, negative memories don’t simply dissolve under the rainbow of cheer. Unfortunately, they often cast shadows too heavy to see beyond. For anyone with a chronic illness, this poses a particular problem, because so much of our identity is tied up in who we once were. I have a stretch of time from my life where the memories are concrete, full and exact slideshows.

Seventh grade can be troublesome for all, with the gangliness, hormones and confusion. It’s easy to understand how anyone could have an event from this time exist like a scar or tattoo, a permanent reminder. Now make that event the acquirement of a chronic illness and that scars runs deep into tissue, that ink permeates to the bone.

I can see myself, in my neon green shirt and acid washed jeans, so popular at the time, starting seventh grade with all the standard awkwardness. Then I unfold in the ensuing months, dropping weight, going sallow and finding my clothes too loose. There’s the exhaustion in class, while my teachers cover history and math and English. Then, of course, the day I was diagnosed. The images so crystal, they pierce upon reflection.

My doctor, unable to hide the turn of her mouth, and my mother, her tears. The searing pain of a first injection. The rising sickness after realizing just what “chronic” means. The first meal, laced with everything but flavor, for how could food every taste the same when wrapped in “enemy”?

The year spilled into the holidays and frustration and downright anger over volatile control and tempting treats, now off limits. No amount of presents could make up for what had been taken, and the winter stretched cold, white and depressing.

I feel those days in their entirety, not merely as remembered snippets. I can still touch on my first hypoglycemic episode and sneaking candy in class. I sense the shame of testing at the nurse’s, keeping everything hidden, a secret, but worse, because the deceit festered. I lost the ability to know myself, who I had been previously, and nothing, absolutely nothing could bring that back.

It’s all there, and I could regurgitate the details ad nauseam, but the act would be futile. Rehashing doesn’t help. Remembering won’t make the pain go away. That year transformed me, molded me and helped to create who I am today. Those memories, like this disease, are a part of me. They are stones for me to step from and create more impressionable moments, all of my own.

Incapacitated

My child is sick and there is nothing I can do to help.

I am certain this is exactly how my mother felt upon my diagnosis. Fortunately, when I thought this, my daughter was only dealing with an upper respiratory virus that swept through our community, and not a chronic illness.

However, the initial antibiotics did not help, nor did switching to alternates, twice. She even presented red welts across her head and back, without improvement to her condition. All my wife and I could do was watch helplessly. It is this inability to act that is crippling for any parent of a sick child. This impotence becomes its own chronic condition for the caretakers of those whose illness will not one day disappear.

This is yet another of the difficulties type one diabetes management poses. The vast majority of newly diagnosed individuals with type one are children under 12. Therefore, some parental figure must direct the path toward diligent care. I was fortunate. My mother is a registered nurse. Her medical training was invaluable for us both, and I owe an overwhelming amount of my continued success to her guiding hand. However, most families do not have this dynamic, and are, instead, often comprised of one sick child and one befuddled parent.

The best assistance for all is education through support groups. Although I was staunchly against such as a child, now as an adult, I fully comprehend the vital role such services provide both parent and child. Eighteen years ago I never considered that my mother’s cajoling toward a support group had just as much to do with her well-being as it did my own. Today, I owe her an apology. I should have gone.

I now understand my mother’s initial paralysis regarding my diagnosis and her need for support. What was she supposed to do? How was she supposed to act? I understand her dilemma in a limited fashion because of my daughter’s everyday illnesses. I am a “fixer”, and relish applying a kiss or a band-aid or a dose of Tylenol to make everything all right. When medicine is not enough, I don’t know what else to do. And If I were to couple that feeling with the realization that it will always be this way, my anxiety would certainly skyrocket. I would need therapy, with utmost certainty.

My youngest is now laughing and smiling with her newly cut teeth, her resiliency is astounding. A child with type one, however, doesn’t get better. He or she only learns how to stay healthy, and that knowledge only stems from the parent’s ability to deliver the proper instruction, which is an education no one wants to give, and for which there is no curriculum. But there is help. My thought, and the one I assume my mother felt is false. Millions have been there, have done that, and are in support groups helping patient and caretaker alike. If you are in this, on either side of the token, know that you are not alone, and that to a degree, it will get better.

 

Self-Sabotage

I have an athletic competition this weekend, and in preparation have been carefully planning my workouts and monitoring my progress. I have also been mindful not to sabotage such effort. Athletes fall victim to this all the time, suffering an injury just days before an event, under the guise of intense training. I don’t buy the ruse, because if you are training intelligently, you know to rest before a competition. I believe many of these injuries are caused by unconscious fear. The athlete is afraid to be put under the scrutiny of competition, and, therefore, designs an honorable way out. People with diabetes use the same ploy, undermining the best self-care regimens from an inability to maintain or out of a fear of success.

How many times have you blown off your diet or have skipped testing or have not injected/bolused the full amount of insulin? We all have, but the better question is: why have we? Of course there are a myriad reasons, and often some combination of many causes is the true root, but many can be boiled down to the following two areas.

The Inability to Maintain:

You’re doing well and you know it; it’s almost frightening how everything is falling into place, just as your doctor said it would. You’ve been diligent with testing and logging your results and carefully proportioning your food, to the point where you feel almost regimented. That unnerves you. You begin to wonder if you have to live this way, in this lock-step manner, in order to achieve that elusive sub 7% A1c result. Worse, you question whether it’s even worth it. Therefore, you abandon your care and find yourself back where you started.

Fear of Success:

You’re the “diabetic” of the family, the office, the group of friends. That title and all its associations and trappings are your identity. As much as you wish you were wrapped in a different label, you embrace the role and actually enjoy the care and concern those around you express regarding your disease. You appreciate the contact, but know it would all change if you altered your care, sought tighter control, resisted the unsavory foods, lost weight and resolved to maintain an exercise routine. You wouldn’t be the “diabetic” you anymore, and so who would you be? The inability to answer that question is what immobilizes you.

It’s difficult to consider the nature of a problem from the inside out, to be truly objective.  For athletes and those with diabetes alike, we have to determine the answer to one fundamental question for all our actions: Why am I doing this? Once we know that answer and understand the reasons for our behavior, then we can change, then we can act appropriately. However, not until we see ourselves for who we truly are, can we step back and stop sabotaging who we want to be.

This weekend, I’ll bust my tail to succeed and will be vigilant over not allowing destructive thoughts to creep in. I have both athletic and wellness goals, and I am to succeed equally. I will, so long as I have faith in who I am and my capabilities. Once there, the possibilities are limitless.

Alive or Trying?

Do you feel as if you are living or that you merely exist? The daily battle with diabetes often muddies the answer to such a question. It is impossible to feel fully free and independent at all times with diabetes. Some days you just slog through. However, if that is more the norm than the exception, then something must be done. I have found that nutrition and sport have allowed me to harness diabetes and live my life, as opposed to having diabetes dictate me through it.

Unregulated blood sugar makes us feel awful and is the classic indicator of being a victim to this disease. Tight control is how to waylay such wretchedness. Diet, then, becomes an overwhelming factor in the fight, but how many of us know what our diet consists of and whether or not it is circumspect?

Keep a log of your daily carbohydrate, protein and fat intake. Do so for a week and then get an average amount of grams for each per day. Once you have all the grams, convert them into calories. Carbohydrate and protein carry 4 calories per 1 gram. Fat carries 9. Now determine your daily caloric intake by adding those numbers. Next, deduce the percentages of each category. Consider your numbers. If your carbohydrate intake is over 40% of your total diet, then you might be looking at an indicator for why tight control is elusive. The more carbohydrate eaten, the more insulin required, and the greater propensity for blood sugar swings.

I eat roughly 2,100 calories a day, with a breakdown of 20% carbohydrate, 30% protein and 50% fat. I have found this works best for me. It allows me a degree of control so that I am less subjected to the peaks and valleys of diabetes. Instead, I walk a level line that I assume feels something close to normal.

Exercise is the other component in working this disease. We, as humans, are designed to be active and play, not to sit all day long. Unfortunately, the latter is the more apt depiction of our typical day. Therefore, we must work at making exercise a priority. The key is finding a sport or program that keeps you coming back for more. The essential element for such success is variation.

I use a program where every day is different from the last. I never know what’s coming at me. This platform has kept me disciplined to five days of workouts per week, for two straight years. The hours I’ve spent sweating and toiling with weights and cardio have been exhausting and rewarding. My body now demands the rigors of physical activity. I am much more alert, energized and alive then ever before.

The exercise coupled with my nutrition has skyrocketed expectations of my capabilities. I am now only beginning to understand the term potential. That is because I have diabetes in check. My lifestyle is forcing it to adhere. Not the other way around.

Food Issues

I have issues. Primarily with food, but as anyone with diabetes can tell you, the food is only the tip, the root is deeper, much more substantial. Yet, it starts with the food, comes back to the food, and will always, in some sense, be about the food. If only I didn’t have to eat.

 But of course, to eat is to live and to have such a bountiful selection is to be human. The conundrum of the omnivore, which Michael Pollan so eloquently details, is in the selection. For us with diabetes, the decisions aren’t as plentiful, especially if we truly want to be healthy. Because we can take our medicine(s), monitor our glucose, work our tails off in the gym, and have it all undercut by too many morsels. That is why I have turned my back on so much of what exists on the menu, in the grocery aisle and even in my fridge.

 Years ago I stopped eating fast food. Why not? I knew it was terrible for me, wreaked havoc on my blood sugar and left me feeling—gross. That step worked well and I have never regretted it. Invariably, one step leads to another and soon enough, the journey unfolds. The overarching theme of the quest: What else isn’t good for me?

 Thus began a slippery slope, which I have boiled down to one maxim, a sort of black box warning that embosses itself over all food items I see: DO NOT EAT ANYTHING PROCESSED. The simplicity is beautiful, but the execution is anything but. Take a minute and think about all that would go on a list that adheres to such criteria. It’s a short one, and sometimes it isn’t sufficient.

 All the variety of fruits and vegetables and nuts and meats cannot replace the bread and pasta and desserts. Even though I am far healthier, with A1C’s that support the change, I am unsettled. Even though I know I’m right, I still have issues. I have not solved my dilemma by simply eliminating what I should not have. Even though I agreed with my Endocrinologist when he said, “You don’t even crave the refined food after a while,” I was lying. I do crave it. All the time.

 But the problem is that I do not know if I feel such longing because I have set the wedge of my plate away from me, or because my disease has done so. Does it matter from whence these teeth-gnashing issues with food have stemmed? Yes and No.

 Food for us is not the same as food for anyone else. Anyone who is on a “diet” or “lifestyle plan—or whatever else we’re calling it—may have similar problems, but at root for us is the lackluster, or dead, pancreas. Therefore, food is a danger and it is a savior. It can make our blood sugar swing unnecessarily high on one occasion, leaving us miserable and sluggish, and in another instance bring our level up to save us from the dangers of hypoglycemia. We live between these encounters and it is no wonder we feel the bars of paradox press against us.

 Therefore, maybe my path is convoluted. Possibly my issues run deeper than the plate. Quite conceivably it is a combination and sadly, not an isolated outlier. No, we with diabetes have issues, that’s a given. What isn’t is in how many ways they manifest.

Success: One Day at a Time

I am successful and I hate it.  Really, I do, because I cannot make a mistake or people will say, “Oh I guess he wasn’t that good to begin with.”  I find this idea so laced with irony it is borderline ludicrous.  The notion behind such a statement is the crux of the problem with our quick-to-judge society, or possibly the nature of this disease.  Inherent in it is the accepted definition of success: Winning one day doesn’t make you a success.  Winning today and the next and the next, for the rest of your life does. No wonder so many people quit before they even get started.

Who wants to be defined on the basis of taking a test and doing well, only to find that another will be given the next day, of similar content, yet slightly varied?  And, no, there is no way to prepare for the tweak.  Certainly not many are interested in such, and, of course that scenario is the essence of diabetes.  Succeed one day, only to find your methods turned into ineffectual shuffling the next.  Therefore, what do you do when you suddenly find yourself down and out?

Let go.  That’s how I’ve made it work.  I’ve had no complications, excellent HbA1c results, and most importantly, a good quality of life.  I dismiss the aforementioned definition of success and play by my own rules.  I do not expect that what worked one day will work the next.  I hope that it does, and I track my results diligently, but this isn’t a perfect science.  When the theory doesn’t work I don’t try to force the square peg into the circular hole.  It will never fit.

I recently had a friend, who is currently overwhelmed by life, ask me how I manage, how I do so much with so many obstacles in my way.  My answer: “I just roll with it, because my ability to make something positive out of the negative is the challenge, not getting everything right, all the time.”  I do not know if this brought any solace, but I have a feeling it at least allowed a bit of space for the notion to grow.

I like a line form a Beatles’ song, “Life is what happens while you are making other plans.”  There’s an essence of indispensable truth in those words, especially for us with diabetes.  Life and “living” easily equate to success and being successful.  Therefore, if we throw out the belief that the only way to one is through perfection, then we may actually start living.