Sunday, July 1, 2012

Obsessively annoying.

While lying on my hospital bed in the cardio-wing of the Georgetown University Hospital, scores of doctors, endocrinology residents and medical students paid me visits to talk about my diagnosis and the affect my condition would have on my life.  While the medical students used me as a guinea pig to practice their bedside manor, the attending doctors used their experience to define for me the long journey I would have from that very bed to a "normal life" on insulin.  Describing the transition difficulty I would experience going from a care-free healthy life to the comprehensive incorporation of blood glucose into my every thought, they laid out a time frame for typical diabetes maintenance and care:
  • six months before I firmly established a diabetes routine and lived as a functioning diabetic
  • one year, or more, before they would discuss putting me on an insulin pump
  • at least two years before I'd be medically stable enough to consider adding the complication of pregnancy to my endocrinology care
Considering HB and I had just decided in the weeks prior to my diagnosis that we wanted to try for another baby in the new year, this time frame purely added insult to insulin-injury.  I was disheartened to hear it would be a year before a pump - a significantly more convenient insulin delivery option - would even be considered by my doctors.  And I was disgusted that the white coats assumed that something as straight forward as carb-counting, insulin bolusing and glucose reading would take this diabetic six months to figure out!

Quite obviously, this didn't go over well. My stubborn-headed necessity to beat the odds and control my life just didn't jive with anything less than go-get-em encouragement.  I wont lie and say there wasn't a learning curve associated with the differences between slow-acting and long-lasting insulin, how to inject, where to inject and how much insulin to administer for any given meal/day, but I was  motivated.  Essentially thinking "this is my new life, let's get on with it" I left the hospital and made it my J-O-B to make life normal again asap.

For the first couple weeks I had doctors appointments every week, then it was every other week, eventually working out to once a month.  By the third month of four injections a day, I walked into my endocrinology appointment at GTU in tears completely annoyed with the comprehensive hold diabetes had taken on my life.  It was at that moment, while looking at my glucose logs and new HgA1C reading of 6.1, that NP Su Chin looked at me and said "let's get you on a pump."

So... in three months I accomplished what the doctors initially told me would take a year to do.  I understood my disease, incorporated it into my life and was ready to take on the more complicated technology that would ultimately make my life as an insulin-dependent diabetic easier.  Go-frickin-me! Long story short, I take my disease very seriously and, as such, I've reclaimed my life from the time frame established by "those in the know." Logically following, I only want to work with competent medical professionals that take my aggressive control and my comprehensive treatment equally as serious.

Thus when HB and I decided we wanted to expand our family, we undertook a multi-month search for high-risk OBs and Perinatologists before beginning the journey we are now on.  By process of elimination we sifted through the chaff and finally selected the Perinatal Associates of NOVA as our go-to perinatologist of choice.  They (and the hospital I'll deliver at) are an hour away from where we currently live, but they are oh-so-worth it.  They treat me like I know what I am doing and they take my condition so seriously that Baby and I receive amazing, attention to detail care.  It takes a lot for me to say I am in good hands and, folks, I am in good hands.

However, as some of you know, I am in Vermont for six weeks this summer starting a new (may I add, really cool) graduate program at Middlebury and that means I need a VT-based doc while I'm here.  Seeing as this is a high risk pregnancy and I am here for several of the big-time pregnancy tests (the alpha fetoprotien test, the level III ultrasound and fetal echocardiogram), I shouldn't work with just any OB and - I kid you not - there is only one high risk OB in this state.   So Friday saw me driving up to Burlington for my first appointment with this doctor...

Beyond implying that I shouldn't be considered high risk because of my excellent diabetes self-care (thank you for the compliment, but my obsessive care doesn't reduce the increased risks as a result of insulin dependence...), this lady had the nerve to ask me why I consider myself to be a type-1 diabetic!  FIRST OF ALL, if you don't know the difference between type 1 and type 2 diabetes, you shouldn't be a doctor.  SECONDLY, if you really want to piss of a type 1 diabetic, call them type 2 - the conditions are NOT the same thing!!  Just because I was diagnosed later in life than most typical cases of type 1 diabetes does not mean that a) my islet cells are capable of producing insulin or b) I gave myself diabetes by poor lifestyle choices. HMPH.

Unfortunately this kind of ignorance (yes, even from medical professionals) about diabetes isn't uncommon. Between the misnomers given to each type and the type-2 centric public education campaigns that are prevalent today, type 1 diabetics are often left in the contradictory position of obsessively caring for themselves while fighting off completely-misguided assumptions of their self-care apathy.  And even within the endocrinology community, as I mentioned earlier, the expectation that diabetics will be apathetic to their condition is so prevalent that the time frame for disease comprehension is drawn out over multiple months if not years...  perhaps it is a lack of personal motivation for some that colors the disease for the rest of us, but speaking on behalf of all type 1s I know the lack of public education on insulin-dependence is simply annoying.

Ultimately this is one of the best diseases I, personally, could have gotten from the (silver lining) perspective that I am 100% in control of my well being.  That optimism aside, my skin isn't thick enough at this point to externally dismiss the uneducated references to my disease as "diabetus" or discouraging inquires about "my diet improvement."  Admittedly I am more hopeful of seeing my personal development of an immunity to stupidity because of diabetes than I am of seeing a cure to islet cell failure within my lifetime.  But let the record show that if the medical community would like to prove me wrong and beat me to the punch, I'll happily eat crow when that time comes.

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