Thursday, December 6, 2012

Take Two New Parents and Call Me in the Morning

When I was in medical school and faced with the BIG DECISION (i.e. which field of medicine to choose) I was really torn. I was one of those nerds who loved (almost) every medical rotation. I skipped from one field to the next and fell in love each time. While rotating through OB/GYN, I thought I had found my home. Until I realized I only wanted to follow the baby after he/she was born, not the mother. I would hang out with the Pediatricians in the delivery room, examining the squirming, wet little tadpole of a baby and drag my feet back to the delivery table when the Obstetrician called me over to stitch/clean/put lady parts back together.
I loved the idea of Pediatrics because children are so innocent. Unlike adults, when children get sick it is usually not due to self-sabotage with illicit drugs and drinking and unprotected sex. I felt this would keep me motivated throughout my career and stave off the unfortunate onslaught of resentment and anger that doctors can often feel toward their patients.
However, I worried about choosing Pediatrics for life. I feared that I would miss that adult connection and conversation that I experienced in every other rotation. As I delved further into my exploration of Pediatrics, it became clear that even though the child is the primary patient, Pediatricians largely treat the parents. So it was cemented -- I could work with the babies and talk to the adults! My cake was had and eaten.
But it isn't always puppies and rainbows in Pediatrics. The most frustrating component for me is the part I thought I'd appreciate the most -- the parents. Namely, the bad parents. Throughout my residency training there were stand-out stories that still haunt me to this day: parents leaving their sick children in ERs, abandoning them in the Pediatric Intensive Care Unit when times got tough, abuse cases, neglect, Munchhausen syndrome by proxy, etc.
And now that I am in training in Pediatric Endocrine, I am especially pained by the less than stellar families of children with diabetes. There are parents that lie to my face about how often they give their small children insulin injections, parents that make up blood sugar numbers and submit them to us, parents that do not bother to find the time/way to bring their child in for important blood tests or appointments.
I was very well-practiced in lying to my family and my Endocrinologist as an adolescent -- it was calculated and intentional. But my parents were absolutely stricken with grief and anguish and worry. I was always so angry with them for "nagging" and not being able to "let it go." I am SO LUCKY to have parents that weren't willing to let it go. Because of my personal experience, I naively thought that it was going to be only the children/teens who tried to lie and deceive. It is appalling to witness that parents -- adults -- are doing this, too.
So in a perfect world, after writing prescriptions for insulin and test strips, I would be able to write a prescription for a new set of caring, honest, hard-working, well-intentioned parents. It's just too bad insurance companies would never be able to cover "priceless."

Monday, December 3, 2012

Giving Thanks


I was scheduled to work over the Thanksgiving holiday and the following weekend. Given that I couldn’t leave town, I invited my parents to join my husband and me for the weekend. I warned them that I might not be totally available – I would have to go into the hospital when we have patients admitted – and that things like movies and day trips would not be possible because I have to be available via pager 24 hours a day for patients and community physicians with questions.

Once my husband’s family caught word of this arrangement, the weekend snowballed from 4 people to 14 people. I wasn’t sure how I was going to handle cooking for that many and my work responsibilities. I figured it would likely be manageable, since previous working weekends involved only a few hours per day in the hospital. Our practice gets, on average, 5-10 new-onset Type 1 Diabetes cases per month. So how busy could I possibly be on Thanksgiving weekend?

Busier than I ever imagined. Two days before Thanksgiving, I admitted 2 new kids with Type 1. The day before, I admitted 3 more. Over Thanksgiving and the day after, 2 more came. Seven new-onsets in 4 days? That was a record for us. And that meant I was barely home at all.

These patients all had to be admitted for multiple days in order to receive diabetes education, which is always a feat to accomplish through the hysteria of emotions that comes with the diagnosis. By now, I have diagnosed many kids and their families and it is always challenging…but the fact that it occurred on or so close to Thanksgiving laid an extra shroud over the circumstances. How sad that a time set aside to be happy and thankful was now showered with anger, sadness, and doubt.

At least, it was for me. My heart broke for these families, with the youngest patient just barely two years old. I was angry that I couldn’t spend that time with MY family. I figured everyone I had admitted felt the same, until they proved me wrong. Several parents were incredibly grateful that the diagnosis was diabetes, and not an incurable form of cancer. Others with broken Thanksgiving plans had huge numbers of family members visit them in the hospital for a make-shift holiday meal. The families of the newly diagnosed kids came together to support each other, instantly bonded through their holiday hardship.

One newly diagnosed patient happened to have two friends with Type 1, and upon hearing of her diagnosis, they visited her with a beautiful, hand-made blanket that read “Diabetic Sisterhood”. This touching gift made me realize that diabetes provides a bond that goes beyond friendship – it is a sisterhood and a brotherhood that connects us and through it, we find strength and understanding.

The stories of that weekend helped me appreciate that there was a positive side to it all, even if it was just a silver sliver on a very black cloud. These families and their friends handled these children’s diagnoses with such grace, and exemplified the idea of Thanksgiving and family in a way I hadn’t thought possible under such circumstances.  

I went home to a beautiful Thanksgiving meal that my parents cooked without me, in a home brimming with family. My Thanksgiving was full of hefty boluses of insulin and of love, and it was one I won’t soon forget. 

Thursday, October 4, 2012

Preach It


They say doctors make the worst patients, and it’s often true. Sometimes it’s because we think we know it all, and other times it’s because we may know a lot but fail to utilize it in our own lives.

A large reason why I was able to a 180 with my own diabetes was because I didn’t want to be “that doctor” that asked so much of her patients without doing it herself.  Now that I’ve been seeing and treating patients with diabetes for a few months now, I’m appreciating that there is so much power in being the example. In these last three months, I have had several heart-to-heart conversations with wayward Type 1 teenagers. The ones that I used to be, the ones barely keeping their heads above a hyperglycemic sea of hopelessness and self-doubt.

I hate that I took such horrible care of myself for so long, but I love that I can now look them straight in the eye and say, “Hey, I get what’s going through your head right now. I know you stressed all day (or longer) about this appointment. I know you’re dreading what your A1C is going to be and what your parent’s reaction to it will mean. I know that you don’t do readings because you don’t want to face the fact that it’s going to be a sky-high number.  I know you snack and don’t bolus because it’s incredibly annoying. I get that this diabetes thing absolutely SUCKS and that paying less attention to it is just EASIER.”

But then I get to follow it up with my little revelation: Even though treating it is more work and such an amazing pain in the ass, the freedom and pride and weightlessness that comes with giving it attention is SO MUCH BETTER than the carrying the guilt of ignoring it.
And when these teens give me the side-eye of doubt, I can re-assure them that I’m living proof of this. And then, if they’re interested, I can share the little ways and steps and changes that I tried, which ones failed and which ones helped. And how it might not work for them but we’ll figure it out together. And that it won’t be a great big success story all at once, but that little changes add up to big changes over time.

These conversations are sometimes successful in motivating these patients, but they’re always successful in motivating me. For every one thing I teach a patient, I learn 10 more.  So I’ll continue to open up to the ones that are ready to hear me admit my failures, so they can hopefully share in my successes.

Practicing what you preach is an art form, and one that I’ll be perfecting for years and years. I just have to keep reminding myself that there’s a fine line between preaching and being preachy :)

Wednesday, July 18, 2012

Broken

[Not to dwell on diabetes-related sadness, but I haven't been able to shake this feeling and must write about it. I don't know how I'll ever be able to handle these experiences without feeling so much, though I'm not sure that I even want to have that ability.]

I was only a week into my training to become a Pediatric Endocrinologist when the call came from the children's emergency room.
We have an 8 year old little girl with no past medical history who presents with polyuria, polydipsia, weight loss, and an elevated blood sugar.
My heart dropped anchor into my stomach. The diagnosis is irrefutable, but I found myself making excuses for her. Maybe her blood sugar is elevated because she just had a whole carton of juice right before they tested. Maybe this is a temporary, false reaction.
But I knew this wasn't true. I whispered these impossible excuses over and over, and to protect whom? Her? Her family? Myself?
I walked from my office to the emergency room, each step becoming harder. I could feel my eyes welling up. Why? This isn't a death sentence. This is manageable. I've had to do it every day since I was her age, and I'm okay. Right?
And of course, she was the most adorable little girl. Her high blood sugar had been caught early thanks to a family member with diabetes who recognized the symptoms and tested her with a home meter. Her mother and her grandfather were sitting with her on the stark ER stretcher with faces equally stark, though she was still shrouded in naivety and ignorance and thus happy, cheerful.

But her family knew what I was going to tell them before the words could come out of my mouth.
And this relieved me.
I thought the blow of the words would be lessened by their knowledge of the disease. But as I laid out the facts of the matter as gingerly as I knew how, I realized I was wrong.  How could any parent's reaction to this news ever be buffered by anything at all?
I could feel the world shifting under this girl's mother. Her face was a million emotions that swirled into blank stupor.  It was as if her brain, to protect her body from this immense trauma, had simply gone unconscious. I couldn't stop myself from wondering what was going through her head; were they the same thoughts I was having? Was she starting to mourn the end of her daughter's innocent childhood, like I was? Did she even know enough about what was to come to realize the severity of this diagnosis? The impact this will have on every hour of every day, for the rest of her life?

As physicians, we cannot mention these things right off the bat, as it does more harm than good. You present the most simple picture, and the rest unravels over the ensuing hours, days, months, years. It's far too overwhelming in the beginning and would not be understood, anyway.

But I know. I know every tear over needles and lancets, every fit over not wanting to count every damn carbohydrate anymore, every dreaded appointment, every fear. And even though I'm convinced that this disease has shaped me into a better person than I ever would have become otherwise, not a day goes by that I don't wish things could have been different. I know what this family is about to go through and it makes me feel like I'm free-falling into nothing. I can help with their insulin doses and their meal planning, but I cannot cure the disease or the emotions that come barreling with it.

I finish explaining the very basics, and ask them if they have any questions, though I know they are too stunned to ask any right now. But the little girl says,
"Can we get someone to fix this TV? It's broken, and I really want it fixed!"

Yes. And we'll add your pancreas, your mother's heart, and my strength to that list of items that are broken and need fixing.

Tuesday, June 5, 2012

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.





Thursday, May 17, 2012

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?

Wednesday, May 16, 2012

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 :)




Tuesday, May 15, 2012

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.

Monday, May 14, 2012

Diabetes Blog Week -- Find a Friend


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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)!

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. 

Friday, April 27, 2012

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.


Tuesday, April 17, 2012

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.



Not Diabetic Enough

For the past week I have been mildly obsessed with Twitter and the Diabetic Online Community (DOC). I did not know it even existed before then, and I completely jumped into the deep-end, cannon-ball style. I check the site throughout the day, following people and reading their blogs. Clicking their links that take me on a meandering course through the internet. I cannot stop and have little desire to do much else.
Perhaps I am making up for lost time...all of those years that I completely ignored my diabetes. I couldn't even call it MY diabetes because I took zero ownership of it. Complete submerged in this denial, I floated through years of my life blissfully unaware of what it was really like to live with the condition. I took my insulin, sure, but guessed my way through boluses and could go over a month (!) without ever checking a blood sugar. I am embarrassed to even type that, but I refuse to hide anymore.
Though the whole time I thought ignorance was bliss, I was simply fooling myself. I harbored a deep-seeded guilt that reared it's ugly head before Endo appointments that I desperately tried to cancel and re-schedule. And floating my way through the years is a bad description; I mainly trudged my way, feeling tried and grumpy and bogged down by sky-high sugars.
So over the past 7 months I've been slowly walking from those dark days into the light. And many days it felt blinding, overpowering, intimidating and I was tempted to hide again under the sweet, soft, dark comforter that is denial. But with each blood sugar I tested and each number I forced myself to face, I changed a little part of me. I learned that they're just numbers, and they can be corrected. Each day I got a little bit stronger and a little bit more determined to beat this thing into submission.
I always hid from my diabetes because I thought it was freeing me from the burden of it all, but the truth is that by owning it, I finally became free. No more overwhelming, ugly, shameful guilt. No more hiding who I really am.
So in my silent stalking of all of these online people with diabetes/type 1 diabetics, or whatever they choose to be called, I feel inadequate. For the first time in my life, I do not feel inadequate BECAUSE I am diabetic, but because I do not feel diabetic ENOUGH. These people seem to have such amazing control over their numbers, such openness with their issues the times that they do not, and such confidence in how they conquer the everyday, monotonous tasks. They know about CGM's, and fancy pump settings, and strategies to cover the craziness that ensues after eating pizza. They throw around puns and funny t-shirt designs. They are cool, knowledgeable people with diabetes. I feel so behind and so desperate to be a real part of it all, like a little sister stepping on the heels of her old sibling, trying to keep up and imitate all that she does.
Despite being diabetic for 19 years, the shedding of my denial phase has made me feel like I've gone through a diagnosis all over again. I'm not sure I even really went through it the first time around, the way many do when they are diagnosed at an older age. I also feel like an extreme newbie because I have only been on the pump for 1 week. The entire process is foreign and a constant adjustment.
So I'll keep looking to these sweet strangers for input, experience, and opinion and weigh it against my own as I build more of it. What a fantastic resource - and despite feeling so "little sister" about it all, I sure am grateful to be able to look up to all of these people.

Sunday, April 15, 2012

Presence of the Pump

It's been a while since I've written and SO MUCH has transpired. My pump delivery was held up because Animas experienced a glitch with some pumps on leap year day (2/29/12) that messed up some pumpers' date/time. This delay stretched on and on, but I finally got my very own pump on 4/03/12! Still pondering a good pet-name for my pump!
I attended my first pump class the very next day and spent the following week pumping saline. I had a few highs and lows during that time (emotional, not BG), mostly grappling with getting used to something "attached" to me 24/7. After 19 years of shots, I am happy to see them go but am taking a while getting used to the presence of the pump. I find myself waking up every hour or so, slightly panicked that I broke it in my sleep.
My second challenge came on 4/11/12, when I replaced the saline with insulin. I felt so excited and confident in the second pump class, and then as soon as the crowd cleared and my husband left me to go back to work, I suddenly felt so alone, so tiny, and so enveloped in my anxiety. But I talked to myself and reminded myself that beginnings are scary, but I'll get used to it with time. How many new beginnings have I gone through these past 19 years concerning my diabetes? So many. I got through them all, and this will be no exception. And after my pep talk, I started feeling pure confidence. I also felt so much pride that I thought I might burst unless I shared that I was now a pumper! I went back to work, proudly told several close colleagues, and felt like a certified super woman.
I can do this - and I'll do it well!

Sunday, February 26, 2012

Opening Up and Spilling Out

Since taking on this personal challenge to dissect my own diabetes history and get to the bottom of my long term denial, I have not been discussing any of it with my parents. This was partly due to the encouragement of my therapist, as she explained that this is about me and not my parents. That I need to work on my own feelings and not be so concerned about hurting their feelings or pleasing them. After the first session or two my mother tried to get me to open up to her over the phone and I shut the idea down. She tried to push further and I held my ground with conviction and confidence that was new to me. And since that time, they have kept their distance in regard to this issue. I think they recognized how desperately I needed this change and growth and were willing to respect my attempt to save myself.
I'm sure this was amazing hard for them, as I am an only child with an incredibly close relationship with both of my parents. I cannot recall a time in my life - especially one as difficult as this - that I have not shared with them.
So last night my mother lightly asked how I was doing. I could have said "fine" and moved on, but I felt I was at a good point in this journey and wanted to share. She put me on speakerphone so my father could listen, and I told them about how I had a follow-up with my doctor and my A1C went from 10.4% to 8.6%. That required me confessing that my A1C's were higher this past year than I had led them to believe. I told them that I applied for the pump and approved, so far. And how I was excited about it.
I talked about how some of my issues with food are likely related to my previous high blood sugars, and that some of my other issues with food may be related to the fact that I had to be so restricted at such a young age. Then that led to talk of how my diabetes care used to go.
Through all of these therapy sessions, I found myself trying to remember back to the time when I was in good control. I have absolutely no recollection of the time when my parents were REALLY involved in my care. I just remember getting diagnosed (when we were in Mexico...on 5/5/93 according to my dad) and learning shortly after that how to inject myself by practicing on an orange on the floor of my parent's bathroom. And crying for hours about it until finally just doing it and finding out out it wasn't that bad. Then the next memory I have is our move from Mexico to Florida about 2 months later. My father performing a glucose reading on me at 2am while I was asleep in our temporary apartment while we were looking for more permanent housing. I was 9. I don't remember anything else until roughly 4 years later, when my control started to wane. When I started menstruation. I remember my Endocrinologist explaining that glucose becomes harder to control with the storm of emotions brought on by periods.
And then I remember the struggles, fights, yelling, lying, sneaking, and crying that followed for years on end. The empty promises I made to work harder, the desperation in my parents' faces when they listened to my lies and looked at my sky-high A1C's and believe me when I told them that I was doing everything as I was told, and that the system was failing me. That I wasn't failing myself. But it was a little of both, I see now. I could have done way more, this is true. But the system DID fail me. When asked, my parents responded that psychology services were never suggested to them. My doctor knew I was lying to him, as I found out when I confessed everything in one of the first appointments I went to alone.  That was not until I was 17. Why did he not ask my mother to step out of the room, even if for 5 minutes, from the beginning of those appointments to talk to me one on one? Kids are willing to be honest, just not with everyone.
Through my discussion with my parents, I learned that they had kept meticulous records of my readings for years. I don't doubt this, I just don't remember it at all. As I grew older and more independent, my parents allowed the responsibility to shift to me more and more (as was suggested).
At one point during this conversation, my mother got incredibly defensive. She was audibly upset and teary, and went on the usual speech about how she loves me more than anything and would do anything she thought was right for me, and I'll only understand that when I'm a mother myself, etc etc. She went on about how painful it is for her to go through this, and if she could go back in time to change things, she would. I put a stop to this immediately. I told her that this conversation is necessary because it is why I'm driving to Boca for an hour each way, every week, paying out of pocket to get to the bottom of where things went wrong. I told her that this is about me, not her, and that in order for me to heal I cannot get distracted by feeling the need to assuage HER feelings. I also told her that many diabetic children lie to their parents in order to protect them from difficult feelings and stress, and that I was done with that.  My father also helped talk my mother down, being the more level-headed/rational one. It worked, and our words got through to her, and the conversation continued very calmly and productively.
Overall, I am very happy that this all transpired. It was difficult and exhausting, but ultimately cathartic.  I feel like the last bit of the diabetes denial slate has been wiped clean.

Saturday, February 25, 2012

Finally Pumped Up!

So I let two months go by without a word here. And so much has transpired! I went to Africa for 2 weeks at the end of January and managed to pay more attention to my diabetes there than ever. I realized that my vacation would be so much more enjoyable if I wasn't so consumed with drinking water and finding places to pee. I ended up doing 5-6 readings per day to make that happen, and I didn't mind one bit.
And through it all, I started to appreciate how the pump could really help me. I still do not love the idea that I will have this tangle of tubing hanging off of me, and worrying how to conceal it...especially when I already have enough body issues to deal with on a daily basis. But I will deal with it.
So I submitted by pump papers and got word that my insurance plan covers it all. Now I'm just waiting on my doctor to send some information back to the pump people and one final round of insurance approval and the pump will be all mine! I actually feel excited about it. Never in a million years did I think I'd be saying that...I've come a long way :)