Diabetes has a sick sense of humor.

Following my hypoglycemia “incident,” I have been trying to get my medical ducks all lined up for a thorough inspection.  Making doubly sure to scrub behind my ears, floss between my teeth (ironically this broke my permanent retainer requiring an emergency trip to the orthodontist, but hey, it was in the name of hygiene), take my vitamins and do an extra plank or two before bedtime, I went into my May endocrinology appointment with the expectation that I was doing everything that could be done for optimal self-care.  Upon seeing that my HgA1C had dropped from 5.8 to 5.3 over the past three months, however, my doctor concluded that I’m probably doing too much to address my diabetes and that’s likely why I had the “incident” in the first place.

“You’re treating your diabetes like you’re still pregnant,” she says. “Your glucose control is too tight and you need to let your overall numbers rise or you’ll be facing more frequent occurrences of severe hypoglycemia.”

Stressing that my concept of the “ideal glucose range” (70 - 140 mg/dL) is only truly necessary for the conception and gestational development of a healthy fetus, my endocrinologist encouraged me to recalibrate my expectations and sight my blood sugar goals above 100 mg/dL so as to provide a buffer between me and, well, the pavement.  Attempting to introduce the concept of leniency into my daily regimen, she argued that my typically aggressive approach toward glucose management will only create more problems rather than solutions as time goes on.  Explaining that while it would logically follow that I become better at diabetes control the longer that I am a diabetic, she said the opposite is actually true because the disease becomes more erratic and more difficult to pin down the farther you go away from your honeymoon phase (which, if you remember, is the period of time following diagnosis where the dying beta cells in your pancreas still makes a small amount of insulin).

“But, what about the adverse consequences of letting my glucose numbers rise?”  I asked.  “Won’t slacking off on my self-care only result in organ damage down the line?”

Taking a deep breath, she responded with the thoroughly uninspired “maybe.”

Explaining that the technology for HgA1C measurements have only been around a short while and that there hasn’t been long term research done on the correlation of A1C management to complications or the lack there of, she said that doctors don’t really know what glucose range to recommend because there are life threatening consequences if you go too far toward either end of the spectrum.  On one side, tight regulation like I do creates frequent medical emergencies for diabetics due to the severe hypoglycemia it creates; whereas unconstrained hyperglycemia on the other end of the spectrum directly causes organ failure, neuropathy, blindness and a whole host of other issues one would rather avoid.  Thus framing my position (rock-me-hard place) as one requiring a very delicate balance, she indicated that she, at least, would be more comfortable with my HgA1C being between 5.8 and 6.0 by my next appointment in August.

Pulling another rendition of my all too familiar phrase of “yes, but” into the discussion I told her that “the perinatologist said that, were we to get pregnant again I should keep my A1C under 5.2 to prevent the complications we saw with this last pregnancy.”

“Well, that’s ridiculous,” she retorts.  “With an A1C that low, you’re more likely to have a hypo-fall and hurt any future babies than to protect them from macrosomia or polyhydramnios.”

Stating that such “minor” complications were (and likely will be in any future pregnancies) unavoidable due to my lengthening history with the disease, she explained that my “diabetic-age” essentially undermines the effects of tight regulation and probably caused the complications with FG’s pregnancy in spite of my stellar A1C throughout the ten months.  So although my A1C this go around ensured a perfectly formed heart, prevented the development of spina bifida and made all concerns about miscarriage or stillbirth a non-issue, it simply wasn’t enough to safe guard against all of the high-risk nuances of a diabetic pregnancy in the face of my crippled pancreas.  But, in light of the existential dangers more frequent hyperglycemia would cause for a growing baby, I think I can cope with the unpreventable complications of larger babies and excess amniotic fluid so long as my glucose management efforts to avoid the worst continue to pay off.  And, frankly, FG definitely counts as paying off!

So long story short, the rational side of me knows the only action plan from here is to set the longer term question about potential future pregnancies aside in favor of very real, here and now self-care concerns and choices.  The emotional side of me, however, is completely upset and frustrated by the “a’int nothin’ you can do about it” attitude I feel like my pancreas is giving me and no matter how I fight its sass-mouth, it still seems to find a way to breach my defenses and leave me vulnerable to its whim.   It’s completely unfair that my growing knowledge of and comfort with my body on artificial insulin doesn’t easily equate to a well balanced, healthy lifestyle.  In some sense, I am envious of those people who have Type 2 Diabetes as their positive effort to address their condition through diet and exercise directly impacts their overall outcome for the better… whereas I can go run a marathon, cut whole food groups to nurse, monitor my glucose numbers, drink water by the gallon and it won’t matter.  No matter what I do, I’ll still be a diabetic and no matter how much “expertise” this brings, I’ll perpetually be relegated to rookie status thanks to the sick humor of chronic illness. 

Last Pre-Baby Endocrinology Exam

Going into day four with my CGM down and no estimated delivery time for my new transmitter battery, I went to my endocrinologist's office today for yet another pregnancy check-up with very little confidence that my sugars have been as tight as they ought to be this week.  Knowing full well that these few days won't have a huge effect on my HgA1C as it's a three month average of my blood glucose readings and since I'm getting measured more frequently than is typical, I could somewhat safely estimate that today's A1C reading would be relatively close to last month's of 5.5.  

Sans kids, Grandmama or HB (aka taunting the traffic Gods to let me get home from NOVA in anything resembling a reasonable amount of time), all of my attention was focused on the appointment and I cannot even begin to tell you how mystified I was by the ignorance of my nurse as she asked me questions about my diabetes. 

"Are you still taking Dexcom G4?"  she inquires.

"Yes, I still use it,"  I respond patiently. 

"How many units of that do you take a day?"

My internal monolog: "Seriously, are you freaking kidding me? It's my continuous glucose monitor, woman! It doesn't use or even measure units! And come on, there are only so many of them available on the market and used by this office! Are you seriously asking me this as if it were a prescription drug?!"

My answer: "It's my glucose monitor."

"Oh.  Are you still taking Medtronic Minimed?"

"Yes..." I said in attempts to mask my skepticism of what was to come next. 

"Is that a pill or something?"

My internal monolog:  "O. M. G.  You have got to be kidding me!"

My answer: "It's my insulin pump.  I use it with humalog." 

"Oh.  I'm new to this diabetes thing."

My answer:  "You're lucky."

Scurrying out of the room after checking my blood pressure (98/80 - um, shouldn't that have been of concern?) and taking a sample of blood for my A1C, she skips several of the typically routine pregnant-diabetic questions and leaves me to wait for the significantly more competent and well trained Doctor.  

Surprised to see me without entourage, Dr. Rogacz dives right into my chart and the CGM trends I've provided for her covering the previous week.  Reporting that my HgA1C is up to 5.9, she theorized that this increase - while in the wrong direction - is likely as a result of less prevalent overnight hypoglycemia and an apparent growing trend in mid-afternoon highs.  Merely suggesting that I add Symlin to my late-morning coffee or adjust my bolus settings for my mid-day meals, she snaps my chart shut and announces that as far as she's concerned I'm doing beautifully.

"The next time I need to see you is two weeks after delivery.  Otherwise, make sure that you set your pump to your lowest basal setting for delivery and that your husband knows to turn off or disconnect your pump at the infusion site if you need to have an emergency c-section.  If he doesn't do that, anesthesia will just rip it out and you'll need it after the procedure is complete." 

Finding it terribly ironic that she didn't really feel like she needed to see me today and that the more serious conversation she planned to cover was intended for HB instead of myself, I appreciated the vote of confidence from my go-to diabetes expert that I'm doing everything motherly-possible for Baby #3 and that on her scale of patients - both pregnant and not - I'm one of the few she's not slightly concerned about.  Wishing she could send those exact words over to the perinatologist for their diabetes-rant days where I come away feeling like I'm the biggest diabetic screw up on the planet, it was nice to know that at just shy of 34 weeks of gestation that I'm off the hook for additional "you need to be monitored" appointments until the end of February.  

Again: go me. 

And to top it all off, there wasn't a bit of traffic on the way home and door-to-door my typical 2.5 hour Friday afternoon commute took me 52 minutes.  Now that's a good way to end the week on a medical high note! 

Week 29 Endo Appt

While the changes with Baby over the next two months transition my perinatal appointments from every four weeks to every two weeks and soon to be twice per week, I take comfort in the clockwork predictability of my pancreas and the resulting routine schedule I have for my endocrinology appointments: when pregnant, I see my doctor every four weeks and when not, every three months.   Seeing as there are still at least eight weeks to go with this pregnancy in the best case scenario, I find myself regularly annoying the receptionists at NOVA Endocrinology with my requests for non-existent appointments in my doctor's overly-booked schedule.  Always tacking me on to the tail end of my doctor's Friday afternoon schedule, I have plenty of time to mull over her suggestions and feedback as we fight our way through the I-95 traffic leaving Washington DC at rush hour - which, thank God, wasn't too bad today. 

 

After the last three weeks of vitamins and omelets, I anticipated that my HgA1C, like my weight, would be lower today than it'd been at my last appointment on November 12.  But while the scale did indicate that my weight is down, my HgA1C remained stagnant at 5.5 despite my drastic reduction of insulin from roughly 55 units per day down to between 30-35 units daily.  Inquiring about my glucose trends, I then presented the doctor with my latest CGM logs...

 

 

Finding my post-breakfast hyperglycemia to be still of concern, she asked if I'd continued the 30 unit injections of symlin with my breakfasts since swapping over to my monotonous diet.  Given that my omelets sometimes include a skosh of milk and sometimes not, I told her no, but seeing as I continue to struggle with post-prandial highs and insulin resistance kicks in to full swing during the third trimester of pregnancy due to the wonderful world of hormones she instructed me to start back up on my morning needle to the stomach routine for better numbers.  Moving on to inquire about my basal rates, I rattled off the nine (yes, you read that correctly: NINE) settings I have programmed throughout the day:

 

1)  12:00 AM to 1:30 AM:  0.450 Units

2)  1:30 AM to 4:30 AM: 0.625 Units

3)  4:30 AM to 6:00 AM: 0.950 Units

4)  6:00 AM to 7:00 AM: 2.50 Units

5)  7:00 AM to 8:30 AM: 0.875 Units

6)  8:30 AM to 4:00 PM: 1.45 Units

7)  4:00 PM to 7:30 PM: 1.75 Units

8)  7:30 PM to 9:00 PM: 1.25 Units

9)  9:00 PM to 12:00 AM: 0.475 Units

Grand total: 28.075 Units

 

Recording this with some annoyance (apparently this kind of nuancing of basal rates isn't terribly common at her office), she honed in on the one number that stood out in it's oddity: 2.5 units from 6:00 AM to 7:00 AM.  Otherwise surrounded by practically negligent doses, this "high" dose demonstrates my sensitivity to the body's natural rhythm of hormone production that happens between 2:00 AM and 8:00 AM that is commonly referred to as the dawn phenomenon.  As the knock on effects of this phenomenon haven't been something I've necessarily struggled with previously (maybe I did and just didn't notice), my doctor explained that at some point my honeymoon phase as a new type one diabetic will end and my insulin requirements will plateau to some degree of predictability.  As I've only been a diabetic for three (almost four... golly...) years, she doubts that my pancreas has fully given up the ghost and she thinks this new found requirement for additional insulin for one specific hour each morning may actually be a step closer to life post-honeymoon with my ball-and-chain pancreas.  

In coming out of today's appointment and having the traffic jam to think about it, I'm torn in to two emotions: frustration with my HgA1C remaining stagnant despite my concerted efforts and shock, I guess, that something may be progressing with my diabetes separately from the pregnancy.  I've become so accustomed to think of my medical situation as a high risk pregnancy due to diabetes that my diabetes just being my diabetes is odd... I'm probably putting too much thought into it and overanalyzing the whole thing, but being diabetic is so... normal... for me now that the thought of being considered as "newly diagnosed" floors me.  I understand that there are men and women out there who have had type 1 diabetes since their childhoods and at my age they are likely settled into their insulin routines with a decade or two of experience under their belt, but I feel so settled and so diabetic in my own skin that the comparison takes active consideration rather than passing acknowledgement to register.  

Well, for better or for worse, my diagnosis anniversary is just around the corner on January 25 and, if we're going with traditional gift choices, that means my pancreas and I should exchange either flowers or fruit to mark the date... we'll see how my next endocrinology appointment goes on January 9th, but I have a feeling we'll be skipping the carbs and going straight for the floral arrangements since that, at least, wont mess with me and Baby ;)

Accessorize your Triceps!

With the littlest man growing and making my formerly soft-squishy belly the taut, thin skinned home to exclusively my uterus I've had to start moving my infusion sites and my CGM away from my go-to, formerly pain-free spots on my abdomen to both old-reliable locations and new, um, more revealing sites.  With my pump cannula pushing upwards of 55 units of insulin into my body a day (30.7 of which is now basal - which is holy cow high!), I'm swapping my infusion sites from hip to hip every few days as it's one of the few spots left around my middle with enough subcutaneous fat to avoid searing pain upon insertion.  Struggling to work up the gumption to shoot that huge needle into my skin is hard enough with that nerve-wracking claaaaaaaaang the spring makes upon release, let alone with the anxious knowledge that if I get the spot selection wrong, it'll sting not only now, but five minutes from now and - if thoroughly wrong - until I change the site all together.

As I've narrowed my go-to site options from four alternating spots (near my belly button and on my hips) down to two (hips only), the reality that my CGM transmitter and my pump cannula cannot be within three inches of each other for accuracy purposes creates the necessity to use previously avoided site locations.  As I only change the CGM once per week, I can't place it on one side and my cannula on the other because of the rate at which my cannula needs to be changed and the requirement that it be placed in a "fresh" spot every time I change.  Requiring more creativity and, well, diabetic confidence than I've previously been willing to display, I'm quite clearly wearing this inconvenience on my sleeve.

Literally.  

Both the CGM and the pump cannula are required to be inserted in a sight that will not only appropriately transfer insulin to my blood stream but to also accurately read the current glucose levels circulating through my system.  These locations, while seemingly everywhere, are actually pretty limited: the abdomen, the hips/glutes, the thighs and the triceps.  Having long since lost my comfort with my cannulas in my thighs due to running (OW!!), the options for my new CGM sites were pretty limited.. either a pain in the butt or the back of my arm.

Cannula and CGM location options

Not finding this first option at all appealing (who wants to sit on a lump all day?), I've had to swallow my insecurity to a large extent and be okay with the possibility of my CGM being visible to the world with my short sleeves shirts.  Knowing this will cause a lot more weird looks from strangers and probably several many pointed questions from curious kids, I wiped down the spot, adhered the tape to my skin and, due to the awkward angle, asked my Mother to push in the needle.  Both of us wincing at the mere idea of this new experience, it actually turned out to be much, much more pleasant a location than my abdomen had been previously.  Barely feeling the pinch of the needle, it seems that I am trading comfort for concealment...

Not quite as trendy as a bracelet or watch,
but, hey! It works! 

Fortunately, in the few days that I've been rocking this new look (note the implied confidence) I've seen more accurate readings popping up on my CGM receiver screen for my calibration tests and it showed in my endocrinology appointment this week.  Meeting with Dr. Rogacz to adjust my pump settings, get a grasp on appropriate symlin usage and run a new HgA1C I'm thrilled to report that all is looking tight and tidy.  My A1C is down to 5.6, my symlin dosages have been increased from 15 units once a day to 30 units up to two times daily and my settings are as accurate as they can be for the next five minutes.  So thank you for that, Dexcom!


Long story short, as this is my first pregnancy with a CGM, this new equipment is forcing me to actually have new experiences with my diabetes and my body.  Feeling like this whole disease is pretty much old-hat now and that there isn't much it can throw my way that I haven't already figured out, it's oddly refreshing to have to learn something new and different for a change... course I probably just tempted Murphy there (knock on wood) and will come back to redact these words in a few weeks, but for the time being, I am learning how to work my new arm-accessory and, fingers crossed, I wont ram it into too many walls or rip it out accidentally.  That would NOT be fun.

All for now.  Fetal Echo on Monday.  Keep your fingers crossed!

Actively Passively Aggressive.

With HB starting a new job and our switching insurance providers (thank you US Congress for removing pre-existing conditions clauses!), the bureaucratic flaming hoops pushed my three month endocrinology check-up back from June to July and I must admit I am feeling anxious about my next A1C.  I'd been slacking back in December with a general apathy toward the world of diabetes and let my A1C increase into the abnormal range with a reading of 6.5.  Feeling self-depricating and flat out pissy about my inability to be under 6.0 without constant focus on my blood sugar readings, I remember Dr. Rogacz looking at me and plainly saying "get over it, perfection just isn't gong to happen."  You can imagine the dismissive internal monolog my brain launched into at this...

Obviously this particular "get over it" method of diabetes management is beyond my scope of comprehension, so I decided to implement a more passive-aggressive approach toward my pancreas by starting on the Dexcom G4 Continuous Glucose Monitor (CGM).  Instead of making me prick my finger or forearm several many times a day to check my glucose levels, my CGM enables me to weekly insert a (rather bulky) sensor into my abdomen and then passively glance at the number and trend line displayed on my i-pod sized display screen.  Letting the CGM do the active work of testing every four minutes (yes, essentially constant), I can pretend I'm non-diabetic all I want without having to endure bruised and sore fingertips.   Granted, I have to calibrate the sensor daily (+) so I am not test kit free, but at least there is some emotional distance between me and my pancreas that didn't exist when my apathy shot my A1C up to 6.5.  

In a circular logic kind of way, my creative interpretation of "passive diabetes management" with the CGM is actually much more actively aggressive than it was before -- even when I was testing 10+ times per day during the pregnancy with GV.  By rarely testing my blood sugar but regularly monitoring the constant sensor information about my glucose levels and trend patterns, I lowered my A1C from December to March all the way down to 5.9!  It seems that despite my continued annoyance with the reality there's no "getting over" being diabetic, I owe all credit for my sanity and overall health to the technology that I'd previously been avoiding...  ironic.

Perhaps in being curious about what another three months of CGM usage will do to my next A1C I am actually starting to take Dr. Rogacz's advice to some degree and I'm finally curbing my apathy towards my diseases.   I definitely have my hopes up that I'll have an even better reading than 5.9 this go around and, as much as I may try to pretend otherwise, that shoots my "don't give a dang" facade straight in the foot.

My July 3rd appointment can't get here soon enough.

Endo Check Up

I am so beyond frustrated with myself for having thoroughly dropped the ball on my blog posts recently... with the best of intentions I keep logging on to start writing and then immediately get distracted by something shinny and wind up hitting save after typing the most basic reference note to come back to in my "free time."  What with unpacking the new house, GW starting pre-school, GV being just moments away from walking and trying to really sink my teeth into my work with Team RWB, I've hardly had time for sleep let alone a coherently written sentence.  Fortunately for tonight, however, I told myself that I am not allowed to unpack another box until I put on background noise and, in order to do that, I decided I need to publish at least one timely blog update first.

So here it is.  

I went in for my every three month check up with the Endocrinologist this past Wednesday, Sept 11.  Beyond the issue that I couldn't provide recent blood glucose logs to her because I've lost my pump download USB in the move, I knew going into the appointment that it wouldn't be a stellar one.  The last couple months have been beyond difficult for me and not because of stress from running, Vermont or any of the other drama that has magically appeared, but because of the gosh darn fact that I'm diabetic.  I'm just done with it and I don't want to play any more.

I am sick of checking my blood sugar so often that my forearms get bruised and my finger tips are painful to touch.  I am sick of needing to count every dang tortilla chip I eat to make sure my carb counting is right.  I am tired of shopping for clothes with an eye to where to put/hide my pump rather than what actually looks good.  I'm frustrated that people glare at me in mass because my "pager" is going off.  I'm annoyed that my training runs resemble more of a staccato sprint than a crescendo of distance because of carb stops.  And, dagnabbit, I am jealous that HB gets a milkshake with his meal and doesn't bat an eye at the massive amount carbs he's inhaling absentmindedly.  It's just not fair.

Yeah, yeah, yeah, I know - life isn't fair.  And, yeah, I got it - God gives us what we can handle.  But that doesn't diminish the acrid reality that chronic is as chronic does and I don't want to "is" or "does" any more.  And, going into my appointment today, I knew that this attitude would come back to bite me  in the butt with my HgA1C reading.

Back at the beginning of June, my A1C was a 5.8  - which as you recall is within the limits of "normal." Today, it's up to 6.1, which in all reality is pretty tight for most diabetics, but is wildly loose for this one.  Between my current (hopefully ephemeral) apathy for the disease and an increasing difficulty with hypo- and hyperglycemic awareness it was no surprise to me that the numbers were up into the abnormal range, however marginal. I rationally understand that I need to do better and that it's just a matter of exerting a bit more effort into self-care, but, seriously, what stay at home Mom has time for self-care? Maybe some have figured it out, but I certainly haven't.

Of course, Dr. Rogacz was generally encouraging as usual and, knowing me far too well, she went out of her way to merely make a gentle nudge on the CGM topic rather than hit me over the head with my own bad attitude.   The latter would probably have been far more effective and appropriate, but I think she knew that I'm ready to give in to her this time anyway and give a CGM a chance since I'm already blowing off active participation in my disease... and since HB wont let me do that (however super model skinny that'd enable me to be) and our NFP requires better of me, I'm planting a white flag of general diabetes resignation and forfeiting the other half of my abdomen to Dexcom.

Sigh...

I don't know what my deal is... perhaps I'm just overextended?  I'm trying my hardest to be the best parent, wife, catholic and veteran advocate I can be, but I know I need to seriously step up my game at writing, home decorating and (oh yeah, supposedly doing a marathon) running -- maybe if I drop out of diabetes 101 the rest of life's course work wouldn't seem so heavy?  Figures, the one thing I don't want, is the absolute one thing I can't get rid of...

Diabetes, I seriously don't like you.

Endo Check Up

It seems funny to me how our perception of time changes based on whatever it is that makes up "normal" every day life.   Last fall, when I was pregnant with GV, I had so many doctors appointments that my days, perhaps even my hours, seemed to be measured in trips up and down the I-95 corridor to Fairfax INOVA Hospital.  But now that I'm back to "normal," fireman rain coats and matching wellies accent my routine far more than white coats, which are soooo last season.  Doctors appointments now merely indicate the passing of yet another three months -- either in the form of a well baby visit for GV or a routine endocrinology check up for me.

The latter is what I did today. 

The past couple months have been ROUGH diabetes wise and, to be completely honest, I've been dreading this appointment for fear of the criticism I feel is entirely appropriate for my self care.  It isn't that I have been slacking on the job or purposefully blowing off my blood sugar (although, to be fair, I simply forgot to bolus once... yikes), it's just that I'll be going along just fine and then WHAM! my blood glucose is in the high 200s and there is no simple explanation for it.  My pump will indicate that I have enough active insulin in my system to cover the correction, but my glucose will have shot up like the insulin wasn't even there and, quite similiarly to when I was pregnant, come crashing down an hour or two later.  Without understandable rhyme or logical reason for this, I've just been rage bolusing and enjoying a few extra doses of whatever something sweet I'd happen to be craving at the time (currently pecan pralines).

Thus expecting an abnormal HgA1C, which if you remember is anything above 6.0, I brought my support group along for the telling finger prick that would inevitably quantify the amount of flack I'd justifiably be given.  Dispensing with the "oh what an adorable baby" and "you must be such a good big brother" comments and getting down to it, I held my breath and gritted my teeth as I waited for the results in the same manor I did while checking the mail box for my college acceptance letters...

Doctor Rogacz entered the room.  We exchanged our pleasantries and, with little ado, got down to my diabetic trials and tribulations.  Explaining that some things have changed - I'm running more, I've been under more stress and that I'd been sick without singular cause - but that most of my lifestyle factors remain the same, I blushed in embarrassment as I handed her my blood glucose logs for the last two weeks which included daily ventures into the 200s.

"Hmm, I don't know what to tell you," she said. "The timing of these highs are inconsistent and you've got a number of lows as well.  But your HgA1C is good at 5.8 - so you're doing something right even with these numbers."

SHOCK.

Reading my face and plainly hearing HB's comments of "I told you so" (he relishes those opportunities), she then not only didn't give me a hard time about my hyperglycemic excursions she was incredibly encouraging of my dedication.

"You're never going to have perfect blood sugars, no matter how hard you try, so try to relax.  You're doing a great job!"

Frustrated with the medical recommendation "to relax" I professionally dodged her compliment with a question or three about my marathon training to which she merely said "do what you have to do to not pass out" which, in endurance running and diabetes management, I take as excellent advice.

So without jabs about my continuing lack of CGM, lectures about abnormal blood sugar ranges or prescriptions for whatever else might be ailing me, I felt like I dodged a bullet today as we walked back to the car.  I thoroughly expected my HgA1C to be in the high 7 range and I lost significant amounts of sleep last night because of anxious dread of medical criticism... but I guess all that worrying was for not.   My Nana, may she rest in peace, always said that the things you worry about never come to pass and until now I'd figured that was just her way of recommending I "relax" but, hey, perhaps she was right.

We'll see where I'm at in another three months.

3 Month Check Up

So I am having a really hard time believing that it has already been 3 months since my last endocrinology check up, but since GV is already 14 weeks old and time just seems to be flying past I guess I buy it.  Originally, my appointment was scheduled for two days ago, but seeing as this is Northern Virginia and any sign of snow makes the entire region shut down, the "snowquester" got it pushed back to this afternoon.

With GW, GV and Grandmama in tow, I met with the wonderful Dr. Rogacz for a routine diabetes check-up for the first time!  Pleased with my weight loss and new HgA1C number of 5.8 (that is down from 6.2 mind you), she announced she wasn't concerned about my diabetes care in the slightest and that I am doing remarkably well.

Inquiring about my longer term plans for additional pregnancies and care planning purposes, I told Dr. Rogacz I intend to spend the next 12+ months training for and running in endurance races.  Since pregnancies, diabetes and running don't work together in the slightest, she seemed a bit relieved to know we wouldn't be putting my body through more of that any time soon, but it did cause her to use a term that I dread from endocrinologists: CGM.

Pump with infusion site on right; CGM on left.

CGM, Continuous Glucose Monitoring, is a technology that works with insulin therapy to keep a diabetics blood sugar as tight as possible.  As an additional attachment to the body, the CGM tests blood sugar every four minutes and logs the results so as to indicate the trending direction of your blood sugar and therefore making it easier to catch it as it goes up or as it goes down.  It'd be incredibly helpful for me on my training runs, it'd ensure my safety overnight by alerting me to lows before they happen, it'd help me keep my A1C lower by giving me constant readings and I'd generally be armed with much more information than I currently get with just my Free Style Lite test strips.  Essentially it is an extraordinarily handy tool and wonderful technology to have... I just don't want it.

Here's my logic:

Because I wear an insulin pump and have an infusion site adhered to my body 24/7/365, I constantly carry a 2" by 3" by 1" visual reminder in my pocket that I'm diseased.  Granted it is an extremely helpful piece of plastic to have and I'd be worse off with out it (multiple injections are so not my thing), but I resent the fact that I LOOK diabetic because I wear this tubed device everywhere I go.  Now, if I were to add a CGM, not only would I be attached to the insulin port that is necessary for my pump to operate, I'd have this transmitting device inserted into my subcutaneous jiggle that would make it all the more difficult to hide my disease under my clothes.

I understand that it is incredibly superficial of me to be concerned about "looking diabetic" and how this beneficial technology would impact the fit of my sweaters, especially since most people don't know what they're looking at anyway, but hasn't diabetes already consumed enough of my life?  I mean I can't even have a cup of coffee in the morning without needing to compose my little grey cells enough to test my blood sugar and calculate my bolus, why should I give another portion of my abdomen over to yet another accessory for my broken pancreas?

Don't get me wrong, that was an entirely rhetorical question and I understand the benefits of it.  I mean, okay, there is something to be said for having an HgA1C estimate whenever I want and, hypothetically, it'd protect me from severe hypoglycemia by averting it's onset in the first place, but I'm incredibly sensitive to lows as is and assuming my daily readings stay within a certain range I know my A1C is where I want it to be without knowing exactly where it is.  Perhaps I am being stupidly stubborn on this, but STILL.  I'm just not ready for that.  I feel diabetic enough as it is.

Maybe sometime down the line I'll come around and will willingly participate in the next level of self-care, but for the time being my answer is HELL NO.    Sorry to disappoint you, Dr Rogacz, I'd love to be your shining star patient with all the bells and whistles, but I'll take my low-tech stellar A1C and go on my way.  See you in June.

Blah A1C

After four weeks of no appointments (I missed my last appointment when I was at the hospital), I went into the endocrinologist this morning for a regular diabetes and pregnancy check up.   Seeing as my blood glucose numbers have been all over the chart for the past several weeks, I wasn't surprised to have Dr P report my HgA1C has gone up.  At my appointment in August my number was fantastic at 5.3 which is completely within "normal people" range, but this go around my number is 6.2 which although it is still "healthy" for a diabetic, it is higher than I ought to be while pregnant.  The perinatologists don't want my HgA1C over 6.0 for fetal growth purposes, but given the steroids they injected to mature Baby's lungs if she needed to be delivered it's not at all surprising that my numbers are inflated.  As long as the number is heading back down the right direction for my next endocrinology blood panel this number should be no big deal, but if it's still high or continues to go higher, then we'll need to start worrying a bit more about the impact diabetes (on top of all the other complications) may have on delivery and Baby's health.

To give me a better shot at a lower HgA1C in a few weeks, Dr P helped me fine tune several of my carb ratios (the lowest is now 7.5 carbs:1 unit insulin) and a few of my basal rates to reflect trending dips and peaks my logs illuminated.  Given that I haven't been eating much since I've been home it's much easier to see where my respective basal and bolus rates are off; for example, my postprandial after dinner has been high several nights in a row indicating that my bolus rate after 5 PM is too low, but my afternoon blood sugars consistently dip into the 50s and 60s after several hours without food so that means my after 3 PM basal rate is too high.

I'm sure all of this will be out of date and need to be changed tomorrow (hoping and assuming my placenta is still working it's "magic"), but for the time being I should be on the right track.  Seeing as the best performance of my placenta is hell for my blood sugars and that I'm supposed to be on more bed rest rather than less, Dr P suggested that I fax her my blood sugar logs twice a week starting Monday rather than coming in to the office once a week for further insulin adjustments.  While I'm admittedly stubborn about dealing with my disease on my own, I'm actually really grateful to her for this flexibility and for her willingness to provide whatever support and assistance she can given the complexity of my situation.  I expect that if my non-existent appetite continues that she'll be mostly monitoring my basal rates for accuracy...

I honestly don't know what to make of my weight or my appetite at this point in the pregnancy, but the perinatologist on Tuesday didn't seem concerned so I'll take my cue from her.  The nurse I had today, however, was the most concerned I've seen any medical professional be about my weight. In fact, she ironically (given the number of Type 2 patients they see) encouraged me to go straight out to get a cheeseburger "or better yet, a double cheeseburger and fries" to pack on a few more pounds.  I'm still six pounds down from when I went to the hospital and I'm at the bottom end of "acceptable weight gain" for week 31 at 17 lbs, but even if my weight is a problem I highly doubt that high-fat, high-sodium fast food is the solution for me or for Baby.  Super indulgent chocolate cake with fudge, maybe, but I have yet to hear a doctor of mine prescribe that.  Perhaps that'll be a point of conversation next week?

Or maybe I'll just go for it with extra cherries and insulin on top since tomorrow is, after all, GW's 3rd birthday :)

And that, my friends, is the Webster's definition of amazing.

So my endocrinology appointment on Monday came and went with next to no fanfare.  I anticipated the doctor to tell me that my numbers this past week were atrocious and that my body is obviously becoming insulin resistant, but instead she looked at my numbers over the past three months and decided that I actually need to turn my sensitivity levels down from 80 ml/dl per unit of insulin to 85 and that if I continue to see regular lows I should decrease it even further to 90.  Fair enough...  beyond that she had nothing else to say about my self care and asked to see me every three weeks until the baby  is delivered.

Unfortunately their office was out of the in-office HgA1C test kits and they were unable to tell me right away the most important information of the appointment.  HB, GW and I trotted down stairs to the hospital lab to have them run the test and I must say that I had the best phlebotomist I think I've ever encountered draw my blood with absolutely zero pain.  Maybe I'm getting too used to needles, but seriously this girl managed to get four vials of blood without even the smallest pinch!

Any way, I had to wait and wait and wait and wait and... wait before finding out what the number was.  But instead of eventually receiving a random phone call from the nurse's assistant, the doctor herself called to deliver the news. My HgA1C is down and that it is the wholly impressive number of 5.3!  Yes, people, that is in non-diabetic range and, yes, I have been doing that well with my blood sugar control.  Little party for me!

For the time being, I'm continuing as is until my next appointment with her on September 14. The reason she wants to see me every three weeks until delivery is to make sure that my sugars are in the range they need to be in for the third trimester of pregnancy.  It's particularly important that my blood glucose be under control now because if they are too high too often then the baby will grow larger than she ought to and that could lead to issues with delivery.  Furthermore, it is very important that my sugars are in control with regards to my other pregnancy complications because if Baby could arrive whenever it is extremely important that my sugars are normal so that the baby is born with normal blood sugars as well.  If my sugars are high, that glucose is transmitted via the placenta to the baby and causes her pancreas to increase insulin production to combat her resulting high bgs.  But if she is born while I am hyperglycemic and she is subsequently disconnected from the placenta (aka the source of extra glucose) she will be born hypoglycemic and will need to be put in the NICU until her sugars stabilize.  Which I, obviously, want to avoid to the best of my ability.

I'm planning to keep my sugars on lock down until she's out, but even during delivery I am planning to run my own diabetes management.  Typically most hospitals want to take over checking a diabetic's sugars and administering insulin via an IV drip for the patient, but I am not comfortable with anyone's standards but my own - so I'm going to do it.  Either HB or I will check my bg every 30 minutes and we'll keep my pump on so that we can fine tune as necessary to keep me at 120 mg/dl or under throughout labor.  If I have to have an emergency c-section, obviously that goes out the window, but in all other scenarios I'll fight anyone tooth and nail to maintain as much control over my body and my pancreas as I possibly can.  It's my responsibility, after all, to grow this baby and raise her once she's out, so while I am willing to accept outside help I reject anyone's suggestion that I hand over the responsibility for my baby daughter while she is encountering the world for the first time.

Yes, I am stubborn, but you probably noticed that already.  Ah well, this stubbornness is why my HgA1C rocks the socks off of my endocrinologist... pardon me while I keep it up!

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.

So I've made the announcement...

As of this past week, everyone who knows me personally should know that I am expecting baby number two.  My husband and I are very excited about this and can't wait to meet "Baby" (our name for him/her) later this year!  My due date is December 11, 2012.

The thing about this pregnancy, unlike the first one, is that this go around I am diabetic.  I can't tell you why or how my body's islet cells continued to function properly under the stress of pregnancy back in 2009, but the reality is I will never have a "normal pregnancy" again.  From here on out, all pregnancies I may have are considered to be "high risk" due to the elevated probability for birth defects and other complications caused by insulin dependence.

To be completely honest I've spent much of the past year and half since my diagnosis worrying about the implications of pre-existing diabetes to my subsequent pregnancies.  I've done quite a bit of extensive reading on the topic to arm myself with the knowledge necessary to make the most informed decisions about building our family and I feel like I've formed the best possible medical team I can for my location to help me get through it.  It still scares me to think that my body can harm the precious thing growing in me, but all I can do is be aware of my own actions and what they mean for the baby.

Comprehensively explaining the complex biological issue of diabetes in pregnancy is best left to the professionals, but for those who are curious the most basic implications are:

• Poor blood sugar control (an HgA1C above 6.0) at the time of conception is likely to cause birth defects in the first trimester as this is the time when the baby's major organ systems (particularly the nervous and cardiovascular systems) are developing.
• As the pregnancy goes on, the placenta acts as a sponge for insulin and makes the mother's body not only insulin dependent, but insulin resistant as well.  This means daily insulin requirements can double or even triple just to be able to control the body's glucose response to hormones and ingested carbohydrates. 
• Poor blood sugar control in the second and third trimester causes the baby's body to increase insulin production and therefore the storage of glucose.  This means that the baby will be putting on extra weight to protect itself from hypoglycemia and can result in an overly large (10lb+) baby.  

While there are definitely factors of this short list that can be greatly expanded upon (what defects are probable, which tests are done, what all this means for delivery, etc), I will only be writing about what I experience in this pregnancy here rather than the laundry list of possibilities.  The take away from this list, however, should be that tight blood sugar control is CRUCIAL for the mother to have well before conception and during the pregnancy to ensure the best probable odds for her baby's safety.

That being said, my husband (HB) and I worked extensively with my medical team for five months prior to conception to get my blood sugars under tight control and to get all aspects of my medical profile up to best possible condition before adding the complication of pregnancy.  I got my HgA1C down to 5.2 (the best number I have had yet) and, God willing, that number reduces the risk of diabetes caused birth defects to normal pregnancy standards.  In order to maintain this reduction in risk, the doctors have given me a ceiling of 120 mg/dl or less for my 2 hour postprandial blood glucose readings... which FYI is wicked tight control.  So far, I'm doing pretty well by testing 10+ times a day and my numbers have been relatively consistent in the 65-120 mg/dl range with the occasional unexpected high reading.  I will say though, my insulin usage so far has gone from roughly 18 units a day to about 45 units a day... we'll see what my ratios and numbers are as the second trimester wears on and the placenta begins to work its oh-so-unappreciated-magic of insulin resistance.

One thing I am really enjoying about being diabetic at this point is that I get a sonogram almost every appt.  With GW (my son) I had four ultrasounds throughout the entire pregnancy, but at only 16 weeks along in this pregnancy I've already had four and expect two more in the next month or so.  By the third trimester I can expect bi-weekly sonograms and stress test to check in on the baby, so I know he/she is in good hands and I am thrilled that I get to see the development a bit more closely this go around.

The final thing that I think ought to be shared at this point (more to follow over the next several months of course) is that because of the third point listed above, the doctors will not be allowing me to deliver the baby after 39 weeks of gestation (first week of December).  This means that based on what they find with the ultrasounds in that final trimester, they will either schedule me to be induced or (if necessary) to have a c-section before the baby is full term.  Ideally the baby will stay put as long as possible, but we'll just have to wait and see what happens come November. (I am secretly hoping for a Thanksgiving baby, just don't tell the Doc on call for that day... ha).

 All for now.  I head to the doctor tomorrow again tomorrow, so I'll report back soon on how Baby is doing.

My diagnosis

In December 2010, amid finals for graduate school and extensive family drama I began to loose weight uncontrollably.  I'd been doing Sean T's Insanity work out program for about five weeks and thought that it was going exceptionally well, but the changes happening with my body started to seem like more than pure cardio...  I was drinking water by the gallon, using the bathroom every twenty minutes, eating whatever I could get my hands on and, quite literally, wasting away into thin nothingness.  

Let's get the embarrassment over with and
on my terms.  Me Summer 2002.


Don't get me wrong, I am constantly fighting to rid-myself of the fat-girl mindset that has gripped me ever since my overweight high school days.  Back then I weighted in around 200 lbs and for the past several years I have been - medically speaking - in range of my ideal weight and perhaps a bit low on the body mass index.  But when the scale began to read three to five pounds lower every day and my weight sank down to 115 lbs (ideal weight calculators say I shouldn't weigh less than 135 lbs) I knew something had to be wrong.   My husband and I even experimented to see if I could gain weight one Saturday night and I ate an extra large supreme pizza, half of a sheet cake and three pints of ice cream with ease... the next morning my weight was down four pounds.  So I put a call into the doctor Monday morning fearing the worst but wanting an answer.  

After the lab work was done and xrays were completed, my husband and I anxiously waited for a prognosis.  Eventually we heard back that my labs conclusively showed that I have diabetes.  Unfortunately, the initial doctor we saw wasn't well versed in the intricacies of the pancreas and he made the assumption that because of my age (24 at the time) I must be a type 2 diabetic.  He sent me home with a prescription for medication that would cause weight gain, a basic test kit (without showing me what to do with it) and a recommendation I take diabetes education classes the following month.  Ignorantly feeling relieved I didn't have anything "serious," I accepted the general diagnosis and went home. 

It wasn't until the next day that the pieces of information the doctor gave me seemed to ill-fit my situation. I'd been left completely clueless as to what being diabetic meant and questions began to overwhelm me...  My lifestyle is very active, I eat well and I am otherwise healthy, so how the heck can I be type 2? How do I use this test kit and what the heck do the results mean? What is it that I am not supposed to eat?  You want me to spend how much on 30-days worth of weight gain pills?!   Um, no. 

Instead of waiting the five weeks for the class I was told to take, I decided to call my God Mother in Colorado who - thank God - is a diabetes nurse educator and the mother of a type 1 diabetic.  Gingerly she walked me through, step by step, the process of checking my blood sugar... I pricked my finger, held the test strip to the blood and waited for the reading to appear on the screen.  But my first reading didn't come back as a number.  I told her I must have done it wrong and tried again.  It said the same thing.  

"What does it say, sweetie?" She asked. 

"It just says the letters 'HI'," I responded. 

"Honey, that means your sugars are high.  Find the instruction manual and tell me what ranges the kit reads to."

Not knowing what it meant to have her say that my sugars were "high" (yes, the doctor skipped over all of that information), I dug through the book until I found what she requested.  

"It says that it reads up to 460 mg/dl,"  I said. 

"Jaime, I don't mean to scare you, but you need to go to the hospital right away.  Don't eat anything, take your test kit and go there now.  Blood sugars that high are very dangerous and it sounds like they have been this high for a while, you need to get to the emergency room."

"Uh, okay..." 

Advising me to go to Georgetown University Hospital in Washington DC because of their national reputation in endocrinology, my husband and I packed up our son, cancelled our evening plans and went on our way.   

At the hospital I felt like I'd walked in with a gushing gun shot wound based on how quickly the staff responded to me saying "newly diagnosed diabetic" and "blood sugar over 460 mg/dl."  Within a few short minutes I was on a gurney, getting new labs, attached to an IV drip and officially diagnosed as a type 1 - NOT TYPE 2 - diabetic.  

Using unfamiliar phrases like "hemoglobin A1C of 11.6," "ketones," "hyperkalemia" and "diabetic ketoacidosis" to describe my situation, the doctors explained in no uncertain terms the severity of my situation and the probability my pending admission to the hospital would be to the ICU.  I quickly found out that if I hadn't come to the ER for treatment, I likely would have gone into multi-system organ failure within weeks and very possibly could have died as a result of the damage.  

Well that explains why my God Mother told me to go to the ER, eh?  

My stay at GTU Hospital lasted four days and it was in those 96 hours that I got a crash course on the impact diabetes would have on my life:   I learned that the islet cells in my pancreas were attacked by my immune system, but there is no way to know why... I learned I would be dependent on artificial insulin via injection or pump for the rest of my life...  I learned that I must count carbs to stay healthy and that nothing should enter my body without knowing its carb content...  I learned what it meant to test my blood sugars and that I'd need to do it at least 5 times a day, preferably more...  I learned what consequences my body may face if I don't take care of my diabetes...  needless to say, overwhelming and scary. 

It's been a year and a half now since I left the hospital and started to actually live life as a diabetic.  I'm on an insulin pump now and that makes life much easier than four-five injections a day, but even with the convenience of automated insulin-delivery I am still amazed by the pervasiveness of diabetes in my general existence.  It affects so much more than what and when I can eat... it impacts when, how and if I can exercise, what clothes I can wear and how I wear them, whether or not I can do simple tasks like drive a car or take a shower, and - most disheartening to me -  it impacts the safety of future pregnancies.   

For a die-hard foodie who loves to run and wants several many kids, talk about a one two punch to the pancreas!  

But such is life and, hypothetically, God only gives us what we can handle so I must trudge on and work on acceptance.  It's definitely not the end of the world, but life with diabetes is hard, it is complicated and it is often very misunderstood.  In the following blog posts I will be focusing on the challenges I face as a diabetic as they arise and we'll see where this takes us.  I'm hopeful that my rambling will help the people in my life understand my situation and help dispel the erroneous assumptions associated with this unavoidable, incurable disease. 

Thanks for reading!