It's Complicated

I have been non-compliant -- or non-adherent, if you so choose -- for many years. Not with every single aspect of diabetes, but overall.

Yet each of those years I faithfully attended my Endocrine and Ophthalmology appointments. I nervously gave blood and urine. I anxiously sat in front of retina scanners with dilated pupils.

I sweated and fretted with each trip, worried that the day had finally come for me to pay for my neglect in the form of protein or microaneurysms.

Miraculously I walked away with a clean bill of health each and every time. And each time I promised myself that I would right my wrongs before my luck ran out.

But I found myself sweating and fretting the week before major appointments again and again. It took me a long time to get around to righting my wrongs. But I got help and I did it.  It's been about 7 months or so that I've been a WORLD more compliant with my diabetes than I have been since the days when my parents were doing my night-time checks for me. In this time, I've felt empowered. I have been feeling in control of myself and my future. Confident. Optimistic. In the clear.

I woke up to get ready for my annual retina exam feeling fantastic despite never, ever being a morning person. Protein shake in hand, I waltzed out the door and hopped into my car. The radio magically played all of my favorite songs while the sun kissed my skin. It was going to be a great day.

And then the haze came, but not from the distorting eye drops or the searing lights in the exam. My doctor rolled his chair away from the machine, looked at me and said, "You have a tiny bit of disease."

I blinked my once-perfect eyes and the tears instantly streamed down my face.
"Some small hemorrhages."
Unsteady. Dizzy.
"Let's follow up in six months instead of one year."
Suddenly swimming in questions and concern. Drowning.

The irony of it all hit me fast and hard and knocked me out for the majority of the day. How cruel to finally, FINALLY feel an ounce of pride and hope for this disease and then get slapped with the news that I had expected every time but this one. I am angry at diabetes, but I am more angry at myself for hiding from it for so long.

My regret is dark, desperate and clawing. I was getting so good at looking forward, but today I cannot help but close my eyes and think sadly on the past.

Diabetes Blog Week - Fantasy Device

Today let’s tackle an idea inspired by Bennet of Your Diabetes May Vary.  Tell us what your Fantasy Diabetes Device would be?  Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc.  The sky is the limit – what would you love to see?

1.) There are few things more irritating than going hypo and still having multiple units of insulin on board. Wouldn't it be lovely if there was an insulin anti-dote that did not involve consuming something? Maybe I'm not hungry/thirsty. Maybe I might want to lose a pound or two instead of gain them. If I'm low and more lows are on the horizon, I want to push a button on my pump that infuses an insulin "eraser", of sorts.

2.) I've only been using Hans (my pump) for the last month, but it has been sufficient time for me to become thoroughly annoyed with excess tubing. It pokes out at the side of my waist from under my shirt, it peaks up from it's cozy bra nest, and it incessantly tries to snag on everything and anything. My fantasy device would be quite easy for manufacturers to produce -- RETRACTABLE TUBING!
Measuring tapes are retractable. Dog leashes are retractable. Come on, pharma!

I want these things! Pleeeeease! Please? Pretty please? With sugar on top? Ok, not sugar. Splenda?

Diabetes Blog Week - One Thing To Improve

Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at.  Today let’s look at the flip-side.  We probably all have one thing we could try to do better.  Why not make today the day we start working on it.  No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!

I cannot focus on one small thing to improve, as there are so many day to day things. With diabetes, there is always room for improvement with SOMETHING, right? I'd rather focus on the one BIG thing I want to fix: My fear of managing diabetes during pregnancy.
Most little girls have dreams of prince charming, fairy-tale weddings, and of being a mother. Didn't so many of us sing that first comes love, then comes marriage, then comes the baby in the baby carriage? I was square in the middle of that group, but especially concerning motherhood. Fast-forwarding to age 28, I am happily married for over one year and the thought of starting a family is one that frolics through my mind now and again. Except the thought doesn't really frolic. It cyclones through my psyche, ripping apart images of a happy pregnancy, clobbering the idea of a healthy baby and leaving only stress and anxiety in it's wake.
I have a very real fear of pregnancy fostered from years of sub-optimal control combined with years of medical school and residency lectures that detail the nitty-gritty facts linked to children of diabetic mothers.  I work in Pediatrics, I rotate through the Neonatal Intensive Care Unit. I see the premature babies, the babies with caudal regression, the babies with hearts that more resemble swiss cheese than intact organs.  I see these infants of diabetic mothers get ushered everywhere BUT the regular newborn nursery - far away from the mothers than long to bond with the present they waited nine longs months to receive.
When these patients are discussed, my colleagues sheepishly look at me and bleat their well-meant words...but I can only focus on the pity flowing from their eyes like invisible tears.
I find myself jealous of friends and family when I hear of their pregnancies. Many girls feel green with envy in these situations, but it is because of their fear of failure to conceive -- mine is a fear of conceiving and THEN failing. When all these girls are showing off their bellies and requesting ice cream and pickles, I'll have to worry about where to place my next pump inset, keeping my readings between 60-95 (!) before meals and only as high as 120 after, and how my every move plays into the routine. Forget the ice cream.
I fear that such a happy time in my life will be clouded over by around-the-clock worry that I'm messing it all up. Many pregnant women are hyper-aware of their health and fear that they will do something to harm the baby, but my hour-to-hour activity could ACTUALLY pose a very real risk.
So I need a better outlook on this topic. I have been reading DOC community blogs that pregnant women with diabetes have written and I've learned that fear is normal, but the situation can be controlled. I am not the first and won't be the last. I am still horrified, but I'm working on it.

First comes love, then comes marriage, then comes excellently tight diabetic control, then comes the baby in the baby carriage :)

Diabetes Blog Week - One Great Thing

I'm participating in Diabetes Blog Week: 

Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”.  But today it’s time to give ourselves some much deserved credit.  Tell us about just one diabetes thing you (or your loved one) does spectacularly!  Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes.  Nothing is too big or too small to celebrate doing well!

It feels strange for me to post about what I do best concerning my diabetes, because for so many years I didn't really "do" diabetes. I'm only recently starting to test like crazy, obsess over every carbohydrate, and pay attention to my body. I scraped by on the bare minimum for so long --- really doing just enough to not land myself in the hospital. The one common denominator that ties both extreme phases of my diabetic life is that I never let diabetes hold me back from my goals.
I worked my tush off to make straight A's through middle school and high school. I played varsity tennis in high school for four years. I went to every social function that interested me. I joined every club that caught my eye. I applied to the universities that appealed to me and took my pick. I made it into med school and then to residency. I dated some wonderful guys and married the best of them. I maintained beautiful relationships with my family, and my friends. 
I did all of this with HORRIBLE blood sugars. I sometimes went for a full month without testing. I guessed my boluses with reckless abandon. I felt more tired than I should have - all the time. I peed five times more than the average person - almost every day. I was irritable and snippy when I shouldn't have been. I blamed it all on everything but diabetes. Maybe deep down, I thought that paying so much of my attention to diabetes would hold me back from everything else.  By ignoring it, I refused to let it hold me back.
Then I turned my life around, and I feel like a new person.  I have energy, I'm in a better mood, I feel in control. I look back at the old me and I am flabbergasted at how I managed to do so much, so successfully, all while feeling SO CRAPPY. I paid so much attention to every other aspect of my life but the part that was so central to it all -- my diabetes, my health. A part of me is impressed by the thought that I was able to fight through it and still accomplish what I set out to do, but it makes me wonder what I would have been capable of had I not always been working as a fraction of myself. 
So now that I can count myself among the diabetics that holds it together and can make their Endocrinologists proud, one might appreciate that it would feel massively overwhelming. I went from 0 to 60, but not without a lot of hard work. And the funny thing is that I feel more free than ever. Despite the 10 checks per day. Despite the pump tethered to my hip. Despite the hyperawareness of the ins and outs of my body. Diabetes is still not holding me back. And I'll make sure that it never will.

Diabetes Blog Week -- Find a Friend

Find A Friend - Monday 5/14

It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends.  With that in mind, let’s kick off Diabetes Blog Week by making some new connections.  Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!!  Let’s all find a new friend today!

I discovered the DOC thanks to Ellen Ullman (@curet1diabetes) and am forever thankful for her introduction. I love this community and the overwhelming support it offers! She has a website (not really a blog by conventional standards) with many helpful links.

As far as the link list goes, I must give a shout out to Julie (@persinable)!

PersnicketyPancreas

I really enjoy Julie's writing and her perspective as a mother of a diabetic. I know there are many wonderful blogs written by parents of diabetic children, but her struck a chord with me and I find myself reading post after post despite a to-do list screaming at me in the background. 

I don't even have children yet, but as a diabetic diagnosed at age 9 I was often acutely aware of the effect my diagnosis had on my parents. I know I kept a lot to myself in an effort to shield them from unnecessary pain.  I've discovered that reading her posts allows me to step into my parents' shoes for a few minutes, and although I often find it heartbreaking, it provides a certain catharsis. 

Writing about her son's thoughts and experiences remind me of my own --- feelings that I haven't allowed myself to touch on for a while. It makes me wonder what my own mother might have blogged about had it been an option for her almost 20 years ago.

Thank you, Julie, for offering an unfiltered view into your life! Many can and will learn from you. 

Re-Birthday

Today is my 28th birthday. Which each passing birthday, that same old question gets thrown around: "Do you feel any different?" The answer is usually no, unless it is a particularly special year that brings along much anticipated privileges such as driving, voting, drinking, etc. Turning 28 doesn't bring along any special perks, but I do feel different today.
Today, I am more in control and feel more like myself than I ever have. I woke up today and gave myself a minute to appreciate that. For years and years I harbored the burden of uncontrolled diabetes all by myself, unwilling to share or open up to anyone, ashamed of the person I was. It was easier to ignore and deny it than to face it or to force the heaviness of it onto people I loved. I maintained a happy and controlled facade, but was spiraling out of control on the inside. As I blew out my candles on each birthday, I secretly wished that the coming year would be different. That I would find the strength to get a grip on something, anything, diabetes-related. But each year, I let myself down.
Except this year. A new doctor reached out to me 6 months ago. She helped me find help and she helped me help myself. It has been a long, bumpy road and I'm still walking it. But I don't walk it alone anymore and I know I won't ever have to go back to being the girl that uses bright birthday candles for such dark wishes.
Today, I will blow out my candles and send off strength to others who are still fighting my old fight. I will do a blood sugar reading, I will carb count, and I will bolus. I will enjoy every bite of that piece of cake, as it is no longer sprinkled with guilt. I am a born-again diabetic :) And I'm planning an even bigger celebration on May 5th, the 19th anniversary of my diagnosis.

Patiently Doctoring

Today is day 17 of the Health Activist Writer’s Month Challenge and the prompt is: Learned the hard way.


I have been reading these HAWMC posts this past week and finally decided to jump on the bandwagon. Better late than never, right? This prompt is loaded, and I could take off running in many different directions. But it didn't take long for me land on the topic I most wanted to settle on.
I knew for a long time that I wanted to pursue a career in medicine, as most physicians do.  Perhaps it was my early exposure to medicine, being diagnosed with T1 in elementary school. Perhaps I was always destined to be in the field, regardless of my own personal health roller-coaster. A lot of doctors will tell you that earning those two little letters behind their name is no easy task, and they're right. Sacrifices are made on a daily basis for the benefit of the patient. Long hours in the library, unhealthy habits, neglected family members, a mountain of debt. I batted my way through those things, but they do not comprise "the hard way." 
The hard way of learning how to be a doctor was to be the patient. It still is, as I'm learning every day. I ended up choosing the specialty of Pediatric Endocrinology because I know, beyond the books and the lectures, what it means to be diabetic. I learned by hospitalizations (not just rotating through the ward), injections (not just administering them to others), and despair (as the nonadherent patient, not the frustrated physician).
And in the future, when I have the most difficult, hard-to-reach diabetic patients out there, I might not be equipped with all of the solutions or a cure. But I will be armed with one phrase that I believe is immensely poignant and has the power to reach people:


"I understand exactly what you're going through." 


I may have learned to be a physician the hard way, but I wouldn't have it any other way.