Move along, Negative Nancy!

Truth be told, I haven’t posted as much because I’ve been a little too Negative Nancy and not enough Very Light, No Sugar for my liking.  Consider this an apology of sorts.  This disease, in my adulthood, has changed me.  I miss the carefree kid in high school who was a dorky, yet extroverted, fun-loving person.  Nowadays, I don’t know what happened to that girl.  I’m still Ally, but on the rough days, I’m Angry Ally.

“Anger is a secondary emotion,” my friend said last week, when we chatted about the typical emotional twenty-something-year-old female stuff.

I have always known that, but the way she said it just stuck with me.  She’s right.  There’s more depth to my anger.  I’m hungry, for starters.  On the bad pump days when my blood sugar hovers in the 250s and 300s, I avoid carbs as if they were the Grim Reaper.  Sometimes it takes the entire day to recover after a pump problem, and I have just adapted to the growling in my stomach and the hunger pangs lodged in my ribcage.

“You look skinny to me- skinnier than when I last saw you. It’s all of this ketone stuff with the pump, huh?” my nurse asked gently as she tried to identify good insertion sites for the pump.

“No.  I’m actually gaining weight from the grad school diet,” I defensively replied, convinced that she was wrong.

That night I stepped on the scale and was surprised to see the 5-pound weight loss.  While it is an easy coping mechanism for all of us to laugh it off and say, “Well, maybe ketones bring one positive to the table,” the reality of that statement is that it is not a joke. Losing weight due to ketones is never a good thing. It is your body burning fat for fuel. It is another painful pump site because you’re out of cushioning. It is how diabetic eating disorders can begin, and it is harmful to the body no matter the circumstances leading up to it.

 

Full disclaimer here: I wholeheartedly intend to eradicate ketones from existence whenever possible, and I would rather gain some pounds than suffer one more day with ketones. But I am mindful of how easily this could escalate into a larger problem. I believe that this is an issue that needs to be discussed more often in the diabetes community, so here is my limited knowledge on the topic and my best effort to get a more open conversation going. If you believe that you may have an issue related to this topic, please know that you are strong and that you owe it to yourself to feel better by getting help.

Beep, beep, beep. Snooze. Ten more minutes. No, eleven. No, thirty-five. Yawn. Working fulltime, grad school at night, and driving to Boston regularly while figuring out the diabetes dilemmas are exhausting in and of themselves. Then, as we all know, diabetes loves to come out to play from dusk to dawn; it’s like a Great White Shark or something. In other words, it is a large nuisance with a ferocious bite. We’ve all been there: Head on the pillow, deep breath, fading into sleep, and then… EEEEEE EEEEEE EEEEEE from the Dexcom on the nightstand. Dexcom is like the loyal dog which never strays from its owner, and I am so thankful to have access to this lifesaving product. (It’s as good a time as any to remind us about #MedicareCoverCGM, right?) But it is just another example of the many ways diabetes disrupts our rest.

Being tired and hungry, for me at least, means that my patience threshold is running on vapors by 10:00 am most mornings, no matter how many very light, no sugar coffees are consumed. Little problems seem like big ones when all you want is pizza for lunch but you know that salad with a few miniscule pieces of chicken is your untimely fate for the day.

Or that one dramatic coworker is going on and on about how much his head cold has negatively impacted his life, and you can barely contain yourself from throwing vocabulary daggers his way- something along the lines of, “I HAVE POKED MYSELF WITH 50 NEEDLES. IN. THE. PAST. THREE. DAYS!!!!!” But you let it slide because you don’t have the energy to fight another battle. But then you feel guilty because you missed a chance to advocate and enlighten the ignorant, damnit! And then you feel like your focus is only about you, when you know full-well that many other people suffer, too. And then you start to live-tweet your emotions, and you worry that you are annoying the heck out of the people in your virtual support team, whether a valid concern or not. And then you feel guilty again. And then your CGM buzzes and you’re still 278 after the second pump change…

I admire the people in the DOC who are open about their emotional struggles with this disease. It takes true guts to be vulnerable to that degree. So, yes, I have a front row seat in the fan club for, well, all of you. It is difficult to come to grips with one’s own emotions at times, but in the long run it provides a healthier mental and physical outcome, if history and science are any indication.

Although being Negative Nancy is not fun, maybe I should also give myself some slack here? Diabetes is a daunting, never-ending job, and those outsiders who say “Laughter is the best medicine” probably haven’t tried to laugh when they have moderate-to-large ketones. It’s just not happening, people. But I can promise to attempt to tap into that whole thing called “perspective” that diabetes gives us a bit more often. We all know that little things aren’t the end of the world because we have already lived through the end of the pancreatic islet cell world. Badasses.

Thanks for putting up with my grumpy tweets. Sometimes it just helps to be heard.

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46.

46

Excuse the blurry image, but I’m sure many of you can commiserate: It is near impossible to take a good photo when your hands are wobbling like leaves in the wind, your heart is beating so far out of your chest that it has relocated itself to your brain where it continues to throb so loudly that you can hear it in your ears, and, to quote Eminem, your “palms are sweaty, knees weak, arms are heavy.”  Yup, that’s a 46 mg/dL hypoglycemic event for ya…

Check out that diamond level ski slope on the CGM, too.  This was not your average low.  This one knocked me on my ass; sorry, but there isn’t a better way to put it.  It was a total beat-down delivered by the notorious bully, type 1 diabetes, and it left me pretty banged up.  I have not had a hypo like that in years.  I iced my bruises and got on with my life afterwards, but the sting was still there, and in some ways, it still is a few days later.

I remember waking up the morning of my senior year of college to a reading of 39 on my blood glucose meter, but I do not remember the same level of “you just got run over by a bus filled with screaming diabetics and then it reversed over you while shooting insulin into your wounds” sort of blood sugar hangover that I endured this weekend.

I must admit that I drank alcohol the night before.  He is a cute guy, he was driving, it was our first time getting drinks, and we frolicked all over the city.  I ate more than I normally do that day, and I monitored my blood sugar closely the entire time.  (You know you’ve found a potential winner when he makes sure to ask if your blood sugar is okay through out the night, FYI).  Anyway…  I am not sure if alcohol played a role here in terms of my liver’s functionality to release sugar.  This hypoglycemic event happened 12 hours after we had been out, and I was not severely intoxicated by any means.  I guess the diabetes guilt trip thing is taking precedence because all I seem to see is “well, this was somehow your fault” if I close my eyes and think about it.  It makes dealing with the reality of the really, reallyyy close call that I had a little bit more bearable in that I can control it in that way: “Bad Ally, be more responsible.”  It’s like the self-imposed diabetic version of the nuns in Catholic grade school, only with fewer trips to the timeout corner.

Well, I’m 26 and I think I deserved a drink with a friend after working and studying all week.  I know that is what my kind doctor would say if she even heard me mention the blame game.  This was not entirely my fault.  I will blog about this extensively later, but I am not in the mood to tell the tale right now.  The long story short is that I experience many problems with pump site insertions almost every time I change the pump.  It is a combination of bad timing and annoying factors; when my nurse finally finds a good location with “virgin skin” to try for a pump site (right now we’ve moved onto the lower back), then there will be some odd defect in the pump product randomly, and so on.  It is a series of unfortunate events that we are working to fix.  I had changed my pump after I got back from going out.  I woke up a few hours later to the Dexcom alerting to a 350 and the nausea that only ketones can cause.  Blah.  I dragged myself out of bed and changed the site, took a manual injection, and set alarms to check on my sugar for the remainder of the evening.

I slowly but surely came down from the high like a deflated balloon.  350 to 300 to 240 to 190 to 150 to 90 to 70 at wake up.  Perfect.  I made a mini bagel which was 20 carbs, ate it quickly, and planned to make eggs.  But then I felt so nauseous that I had to rest my head in bed again.  The nerves kicked in.  I’m low but I feel sick.  Should I call an ambulance?  Relax.  You just talked about this with your doctor.  She told you that you could do it, that you know exactly how to treat a low, that you are not dumb, that you are strong enough to face this.  That conversation had occurred on Monday, and in some soul-searching kind of way it rang in my ears as I consciously made a decision to fight for my life in that moment.  I did not quite realize what was happening yet because my mind was hazy from the low.  I was not simply “low”; I was in fight or flight mode, moments away from passing out.  It was like someone hit me over the head with a few unintended units of Humalog and I was staggering to keep my balance.  I wish that I was being my normal 20-something-year-old-female-dramatic-self, but I am not; this was a dire situation and it pains me to admit that.  I live by myself, so it was up to me to solve this problem in its immediacy.

The Dexcom continuous glucose monitor snapped me out of my fog momentarily to comprehend what was happening.  It was alarming repeatedly and I looked over and saw “LOW” in red writing.  Yeah, I know.  I clicked on the center button to see what my actual glucose reading was and gasped.  46 with a down arrow.  I lethargically stumbled to the fridge and chugged a bottle of juice before eating an entire cabinet full of food.  The rebound high blood sugar was very persistent, but I suspect a lot of that had to do with the fact that my liver had released sugar to keep me conscious while in the throes of the low.

All in all, 46 scared me.  It was a reminder of just how fragile life sometimes is with diabetes.  It knocked me off my pedestal and left a handprint across my face that lasted for hours.  My friends sent nervous text messages; my parents called to check in multiple times during the weekend.  I must accept that sometimes these lows may come out of the blue, as diabetes is a malicious jerk; we’ve been over this.  However, my doctor was right: I have 23 years of practice handling diabetes since my diagnosis at age 3; I know what to do.  But I sure am grateful that the Dexcom CGM was there to remind me as well.

I do not believe that the outcome would have been as favorable had Dexcom’s persistence not been there during the 46.  This is all the more evidence for Medicare and private insurance companies to cover continuous glucose monitoring for all diabetics.  And it is also all the more reason to hug your family, friends, doctors, and nurses tightly, to get down on your knees and pray for a cure, and to continue to support the diabetic online community in its advocacy efforts.  In the past, others were not as blessed to have CGM access as I was this weekend.  That concept is not lost on me.  I carry you all in my heart, and I promise to keep fighting on the bad days because of inspirational people like you.  Thank you…