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In a half-hearted attempt to organize the chaos that is life, my Gmail is full of color-coded folders.

Diabetes is red, like blood and rage and sunsets all in one.

Grad School is blue, and there is a whole rainbow of colors designating each course in the sub-folders category.

Finance is green, and it is often ignored until it can no longer be ignored.

Quotes folder is pink.  Because “On Wednesdays, we wear pink,” a la Mean Girls.

Speaking of quotes, C.S. Lewis and Mary Karr (The Liars’ Club) are my go-tos.

“I have seen great beauty of spirit in some who were great sufferers. I have seen men, for the most part, grow better not worse with advancing years, and I have seen the last illness produce treasures of fortitude and meekness from most unpromising subjects.”

-C.S. Lewis, The Problem of Pain

“For me, everything’s too much and nothing’s enough.”  -Mary Karr

And one more for good measure because it reminds me of all of the bloggers/tweeters who I’ve come to love:

“She spoke with unhesitant authority, as though we had just picked up a long-running conversation in which her opinion mattered greatly. However frail the rest of her was, all her strength was in her voice.”

-Gail Caldwell

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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.

Are you there, God? It’s me, Very Light, No Sugar.

Did you just laugh?  Because God did.  Or I like to think He did.

I know God is there.  I know people from the diabetic online community are there, partly because I tweeted that it was 3:00 am and I was awake and frustrated with diabetes and I knew that people from the #doc were up, too, and it got a few favorites rather quickly.  It’s funny how those simple gestures can make one feel less alone.  Excuse my rapid-fire Twitter vent session following that tweet, but I’m tired and I’m aggravated and maybe this blog post should be called “My Stream of Consciousness Regarding Diabetes at 3:48 am is actually ‘Very Dark, Corny Humor'”?

Well, this is real.  This is what those #FreeDiabetics pictures portray without sugarcoating it.  We all want to be free and we deserve to be free.  This is the side of diabetes that society doesn’t often see; this is the suffering that I wish none of us ever had to endure.

I’ve been on the phone with diabetes companies all week trying to sort out insulin pump problems that I am having.  I owe ya’ll a blog post about that, I know.  Consider this the precursor post.  We are troubleshooting every element to see where the problem arises.  Is it the infusion sets?  Is there a product defect?  Is the pump functioning properly?  Is the reservoir releasing insulin correctly?  Am I inserting into scar tissue?  Muscle?  Am I sick?  Am I stressed?  These are the constant questions when something goes awry with diabetes; rarely is the culprit caught red-handed.

Ketones are my nemesis.  They make me buckle at the knees and revert to being a whiny, miserable child.  Even small amounts of ketones send me straight to bed.  Unfortunately, with all of these issues going on in the background, ketones rear their ugly, ketonic heads quite often nowadays.  It is a testament to how great my nurse is that she is one of the only people who I can definitively tolerate in these moments of weakness.  Well-intentioned friends and family members are unjustly used as scapegoats for my anger when ketones appear.  It is easier to allow a nurse or a doctor to tend to the invisible wounds.  Alas, they are in Boston and I am in the Providence area, so it’s Ally versus the Ketone Crusader at what is now 4:00 am.

I struggle with taking in a lot of carbohydrates during the day.  Years and years of traumatic experiences- from inadvertently taking too much insulin to having a bent pump cannula while eating pizza which led to a blood sugar above 500 on my birthday, etc.- have led to a “fear of extremes,” as my doctor put it.  We’ve all been there to some degree.  But I am being honest with you all in that I am somewhat stuck there right now.  I go to the doctor all the time to work on this.  Part of the process comes with trusting my insulin delivery mechanism.  Let’s narrow down the potential problems list until we find something that works in terms of insulin pumping, and then we have to work on ingesting more carbs and properly dosing insulin once we can be confident that insulin is delivered.  Back to the basics.

I do not want to go to bed with my stomach growling anymore because I am afraid of eating a big dinner on top of a potentially-faulty pump site.  I promised my doctor last week that I was going to try, that I wanted to do this.  “I do not want to go to bed hungry at twenty-six years old, and that’s one thing I can commit to changing,” I said as she smiled and nodded, proud of our progress.  But tonight I did go to bed hungry.  I had eaten a larger than usual dinner (but still not large enough) and changed my pump site afterwards, while then babysitting my blood sugar as it slowly but surely went up and up.  My stomach churned as ketones formed, but I convinced myself that they were not there and went to bed, ignoring the persistent emptiness in my gut by sleeping it off.  Later I woke up with a ketones level of 1.2, probably a combination of my body burning fat for fuel in its hungry state as well as a bad pump site…  again.  This happens on a weekly basis, hence the ever-growing bags under my eyes.

Back to the drawing board.  My goal tomorrow (well, later today at a normal hour) is to eat more carbs and take a “perceived risk” by dosing more insulin with my spiffy new pump site once I wake up in a good range and know that the site is doing its job well (fingers crossed).  I would greatly appreciate it if anyone who has gone through similar trials with insulin pumping and low carb intake would offer advice, whether in comments here or in private messages.  (See Contact page on the blog).  I know that I’m not crazy, that there truly is a problem going on even though I feel like a broken record talking about pump site issues, that someone out there has to relate to this somehow.  Please, help a diabetic Sista out.  If I can pay it forward in any way at a later time, or even if this post resonates with you in some manner, my work here is done for 4:30 am.

Time to go count diabetic sheep.  Goodnight, #doc.  And thank you for listening.

#dsma Hashtag Awesome.

Yesterday was my inaugural #dsma, or diabetes social media advocacy, Twitter chat.  Beforehand I was both nervous and excited all at once, but hey, this was like the diabetes version of the stereotypical prom night, so what else do you expect?

I have randomly favorited #dsma tweets over the years and probably interjected myself into a few conversations, but I have never sat down to fully participate in the process.  I did not really know how to begin, or what to do.  Thankfully, other diabetic online community members pointed me in the right direction and offered me the invite to sit at the #dsma lunch table with the seniors on the football team and the diabetes advocacy cheerleading squad (all of you).  For starters, everyone was super welcoming.  In my less-than-two-weeks of blogging and online posting in a diabetes capacity, I must say that I am thoroughly impressed with everyone’s writing talent, passion for advocacy, knowledge of this selfish jerk of a disease, and overall support for one another as we all fight the same battle from various battlefields sprinkled all over the globe.  It is empowering to know that people out there “get it,” and to see this come to life online every day.  I know that there has been some talk of exclusivity in the diabetes online arena, and I am too new to the game to really have a firm understanding of all of the many players and puzzle pieces involved.  But from my own perspective I have observed that everyone helps in his or her own way.  That is life, and that is important.

Maybe a single mother working fulltime to support a diabetic child only has time to blog once a month, but her blog touches another parent of a type one diabetic who faces similar hurdles each day; Super Mom has done her job well, if that is the case.  Others may have more time, financial resources, energy, et al. to invest in diabetes social media advocacy, and that is fine, too.  We have all filled the shoes that we needed to fill simply by typing these posts on our respective laptops, IPhones, etc. from time to time.  A lot of us still have room to grow into our figurative footwear, but the good news is that there are always chances to move on to bigger and better shoes.

For the hour that I participated in the #dsma chat, I was surrounded by others who “got it,” too.  I did not have to censor myself for fear of boring to death someone who did not care about diabetes.  We all care about diabetes to the point where we are not going to sit back and let it smack us into unrecognizable versions of ourselves.  We may show up to work or school each morning with bumps and bruises from iffy pump site changes or injections gone awry, but our spirit is still there, even on the rough days.  Diabetics are relentless.  We all have our days where we feel down and defeated, but we all rise each morning to face a disease that never rests.  I am convinced that diabetes’ blood is straight up Five Hour Energy drink mix.

We are the real life “Diabetic Davids” going against a Goliath of epic proportions, and he is always waiting to beat us up after school.  But this time we have come equipped with an army of Diabetic Davids who are not willing to give up.  We have discussed our tactics, polished off our technological diabetes weaponry, and run onto the field a la Braveheart- except we have used our words and have held hands virtually in an organized chat called #dsma, and we still have a lot of fight left in us.

Thank you for inspiring me with your willingness to go into battle every day and for not being afraid to take the dorky freshman of the diabetic online community campus under your wings.  For this, I am eternally grateful.

Love,

Ally