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.
Very Light, No Sugar 
Hi lovely, just wanted to say thank-you for this! I am a T1 diabetic and struggled (still do a bit) with an eating disorder. Recently my recovery has hit a stumbling block because i have switched to injections, from the pump, due to lack of sites from ‘lack of padding’! So reading this was a real comfort for me, thank-you and sending all my love and best thoughts xxxx
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Thank you, Sophie. Your comment means a lot to me. As you have blogged about also, diabetes has so many factors (physical and mental) involved in getting through the day. At times for me it is a daunting task, but knowing others understand helps exponentially, so thank you. I pray for all the best for you, and if I switch back to trying insulin shots soon I may be reaching out to you for some advice!
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I usually ignore the emails from twitter “Do you know so &so?”, but today I actually opened the email and you were one of the suggestions, to which I now owe Twitter a thank you.
There’s totally a time and place for Negative Nancy-ing, and I think when we try to present the “happy” side all the time, its ultimately a dis-service not just to ourselves but also to the people who end up searching for commiseration on a bad day. I have to convince myself to tell other D-folk about the crappy side, because on the one hand you want to present as “Sure, we might have D, but we’re strong, confident, healthy people and we make stuff happen because we’re not victims!”, but at the same time, its hard, and when you’re feeling down and crappy you at least want to know that that’s normal too.
I think we’re in similar places, you and I, despite being on opposite ends of the spectrum. If I could lose 5 pounds “accidentally”, that would potentially appease my doctor temporarily (but would still leave, oh, 30lbs to go, and 50 in a “ideal” world); but by far my bigger issue is that my infusion sites suck. They hurt. They’re irritated. They work poorly, and for a maximum of 48 hours, but closer to 24 or 36hrs, which leaves me changing sites out so often I’m out of real estate despite having plenty of extra padding. Not to mention the day it takes to recover from a day of stupid highs, which is about every other day now given the short lifespan of sites. And to add insult to injury, I guess I’ve jacked up my basal rate to average across the days with lousy absorption (which is effectively 2 out of 3 days), so when I actually do get a good site, I spend the day fighting lows. I guess that works out better for my averages, but its not very good for anything else. (For what its worth, I sat down this past weekend and finally figured out some of the patterns, so now the goal is fixing, but I didn’t get that far yet.) Negative Nancy, I hear you!
My tentative plan, is to find an allergist and hope to find some underlying mild allergy thats setting off other problems (my sister has a history of such things, like the 2 years of “mono/chronic fatigue” that turned out to be a milk allergy and literally within 2 days of cutting dairy she was back to normal, after 2 YEARS of run-around by the standard medical world!). If allergies aren’t the answer, then I’ll go searching for an acupuncturist or a chiropractor or a “naturalist” or someone who believes in the healing power of yellow crystals… whatever! because I think at this point conventional medicine isn’t the answer. Sure, I can keep changing sites daily or increase my insulin to attempt to bring down highs faster, but I’m convinced there’s something going on underneath it all that needs addressing.
Anyhow, I appreciate finding someone else out there having a hard time so I at least don’t feel like I’m the only one….
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Wow, guess I owe Twitter a “thank you!” Nice to virtually meet you, Skye. So much about your comment resonates with me. (There is a longwinded post on my blog called “Broken Record” which really goes into all of the pump issues I’ve had if you’re interested. I owe the blog an update on recent trials and tribulations since that post, but need some time to sit down and articulate things clearly). Anyway, I love what you said about there possibly being an underlying problem causing some of this. For years I have speculated that allergies have something to do with my high blood sugars. It seems that every weekend when I have a major pump meltdown, I have also been fighting a stuffy nose/sore throat thing and random skin rashes, all which have never really been diagnosed. It makes the already-confusing pot of diabetes factors even more complex. What is causing what? I truly believe that some of that is part of autoimmune disease and needs to be explored more in science. For example, I have a friend with muscular dystrophy who breaks out in hives for no reason- same sort of stuff as we sometimes see with diabetes. I appreciate your honesty with your struggle here and I agree with you that it is a disservice to ourselves to not experience all of the emotions that diabetes entails. I want the real deal! 🙂 You will be in my thoughts and prayers and I hope that your insulin pump problems are mitigated somehow in the near future. Thanks for reading!
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Oh, you should definitely give yourself some slack here. I think you’ll get the pump thing down cold. Sorry about the ketones, but I never suspected any Negative Nancy-ing from you. Good luck!
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Thank you, Stephen. We’re getting there, slowly but surely. Thanks for the support!
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