Month: September 2014

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…

#FreeDiabetics

I love this movement because it is short and sweet (pun intended).

Check them out at:   https://www.facebook.com/freediabeticsmovement   and   @freediabetics_

We live in a world very much capable of finding a cure for diabetes, but it will take lots of prayers, research, financing, and determination.  Until then, diabetics are imprisoned in a state of constant vigilance regarding high and low blood sugars.  There is no parole when it comes to type one diabetes.  #weneedacure

FreeDiabetics3

Side Note: Very Light, No Sugar suggests looking at Faustman Lab at Massachusetts General Hospital and donating whatever you can- even the $2.00 that you would normally spend on your morning coffee- to help us to one day rid the world of diabetes.

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Don’t Cry?

As type one diabetics- many of us diagnosed as children- we learned from a young age to be tough.  Grown adults cried like sissies getting their flu shots at the health clinic while we stood still with stoic faces.  One of my strongest memories is of my first endocrinologist’s office. I had just turned three years old and was getting accustomed to insulin injections and finger pricks. This particular office in the Worcester, MA, area performed A1C tests by drawing blood from their subjects’ arms with syringes and then sending the samples off to the lab. Pretty caveman-like if you ask me…

Well, I was three years old and a few nurses were pinning me down to stab me with a long needle. Naturally, I cried. We went back to that office a few more times. I can still visualize the indoor playground they once had in their waiting room, until someone became fearful of liability and it was removed. My mother tried to comfort me, telling me to be strong. “Try not to cry,” she said. What else could she really say? I was going to get shots for the rest of my life, so the sooner I learned not to fight this concept, the better for all of us.

At the next appointment, I bit my bottom lip and braced myself for the impact of the syringe in my tiny arm. I didn’t cry my usual amount, but I whimpered a bit.

“I didn’t cry!” I proclaimed as we walked through the parking lot afterwards.

“You didn’t…?” Mom asked.

She was not trying to come off as cold, but was rather incredulous at how my young mind had just rationalized away all of the tears flooding the examination room a few minutes earlier.

I had the three-year-old version of an “Ah ha” moment, in which I realized that okay, I had cried. But I wasn’t going to cry anymore. I resigned myself to this fact, and at the next appointment I did not cry. I had accepted my fate in some small way; shots were here to stay.

Shortly thereafter my parents took me to the renowned Joslin Diabetes Center in Boston, a decision partially prompted by the fact that their A1C tests were performed with simple finger pricks as opposed to modern-day torture tactics. Over two decades later, I am still a Joslin girl. And I still fight back my tears sometimes, but I am slowly learning that it can be healthy to let them out once in a while, too. There is certain strength in vulnerability, in showing that you hurt emotionally and/or physically but that you are going to get through that pain.

I cannot speak for every type one diabetic out there, but I would venture to guess that some of you have difficulties letting your guard down at times, too. How can we complain about a head cold when we have endured thousands and thousands of injections over the years? I can’t believe my boyfriend is upset that he lost his football game! Seriously?!!  But the reality is that these are human emotions and normal trials and tribulations of life, even if these situations are not a life or death fight as diabetes sometimes can be. It is more natural to express what you are feeling than to avert your eyes to the ground while feverishly blinking back tears. Trust me, I have been there, done that, and many times at that rate.

I see today that my mentality of always being strong was a survival tactic yet a detriment all at once. Some days I have a quick temper because it is easier to be angry than to acknowledge being scared or defeated.  I am my own worst enemy when it comes to epic PMS-y Facebook rants, but this is an excuse.  Sure, we were dealt very frustrating hands by being diagnosed with diabetes.  The general public misunderstands the constant battles we endure.  We rarely get a break from the burdens of this disease.

But at the same time, if I cut the BS and allow myself to say, “Okay, your blood sugar is high and you’re afraid of the long-term damage this could do to your body, and you’re tired from being up all night responding to Dexcom alarms, and you’re stressed with ‘normal people’ factors like work and grad school,” then yeah, I am a human being. It is okay to cry.  It is okay to be fearful.  It is okay to feel, to admit that sometimes pump site and CGM changes hurt like hell even though you told yourself that the pain was the least of your problems years ago.

And I said that yesterday, too. To which my doctor replied, “But it’s not the least of your problems if you’re shooting a pump site into muscle because you have no ‘real estate’ left that is free of scar tissue.”  Fair enough, and directly to the point.  She is right.  Acknowledge that it is a big deal, Ally.

Sometimes crying makes one braver than not crying.  At least crying invokes honest, real emotion from which we can grow.  I’m ready to ditch the war paint if it means connecting with others on a more meaningful, understanding level.

“My doctor is showing up, so I probably should be, too.”

A friend- let’s call her Kayla- made this comment in a grad class we are taking together this month in regards to her former interactions with a doctor.  As a teenager, Kayla was understandably a bit defiant in terms of complying with her physician’s advice.  Weren’t we all?  But one day she had an epiphany: What was the point of attending the appointments if she was not willing to be open, honest, and determined in the process of seeking care?  “My doctor is showing up, so I probably should be, too,” Kayla realized.  She changed her outlook and told the doctor her concerns while soaking up his recommendations, taking baby steps until she was comfortable to set more progressive goals along the road to getting better.

The class laughed and we all nodded our heads in agreement.  We can go to the doctor multiple times a month to get bandages placed on our respective health maladies, but this is only temporary relief for pain and suffering that is long-term in nature if it involves chronic illness.  We must not simply “show up” with our physical presences, but also with our attitudes.

I have a doctor’s appointment tomorrow and I hope to carry Kayla’s mantra with me.  I want to “show up” with my “game face” on, ready to tackle the issues.  My doctor is strong for me every time I seek her help, so I must, in turn, be brave when making the adjustments she suggests.

Thank you to everyone who offered words of support during my rough day yesterday.  Unfortunately, those days happen more often than I would like for various uncontrollable reasons.  Chronic illness is like trying to stop a leaky faucet by clogging it with a piece of Swiss cheese.  When you fix one spot, another issue can always arise.  My pump site is working well today, but my allergies might cause my liver to release sugar and my blood glucose levels to increase, for example.  Alas, it is a new day and I am thankful that the diabetic online community understands what I mean.

Enjoy the rest of your weekends.  Here’s to a week of good health for everyone.

Blue Fridays

*Edit as of October 15, 2014: In my original Blue Fridays post from September, I featured Project Blue November, but I also should have mentioned that Blue Fridays is the brainchild of Diabetes Social Media Advocacy.  See more here.

Meet Ace, everyone!

Those people (and dogs) that you see with the blue circles on their social media account profile pictures are participating in the Project Blue November movement.  I encourage you to check out their Facebook page.  November is diabetes awareness month, but we all know that advocacy takes place every day.  Each Friday is “Blue Friday.”  We are sporting our blue today in order to promote diabetes awareness.  This is a fun, easy way to get your friends and family involved in diabetes advocacy efforts.  We’re all in this together- one giant sea of blue.  Let’s do this thing.

Ace Blue Friday

#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

Dear Concerned Caregiver,

Thank you for being brave enough to reach out to Dear Ally.  Seeking out help is never easy, but it gets simpler once you actually ask for it.  Congratulations on accomplishing the first step.

“D” sounds like he is conniving at times, but judging from your editorial, I think he can be tamed.  It will require you to put in hours of work every day, and some days no matter what you do he will not listen.  I would never recommend that someone stay in an abusive relationship unless serious counseling and professional help is sought, and even then it can be a tricky situation.  But your relationship with D doesn’t quite fall into the abusive category.  It seems that he is intertwined with your life, and this does not have to be in a hurtful manner.  You are not D, and D is not you; but you are an essential part of one another.  I mean, 20+ years together!  You can’t simply throw in the towel now.

Some days D will ruin your mood, and that is okay.  This is part of being human, and no one should make you feel badly about it.  The people who offer corny advice are not worth the frustration.  They may have suffered in other areas of their lives, but this is a topic that they may never understand if they are belittling you during your difficult days.  Do your best to enlighten them, but do not get hung up on them.  Focus on you and D and what you need to do to create a more open relationship.  Take care of yourself first and foremost- emotionally, physically, intellectually, socially.  Once you are revived, you will be able to offer D more of what he needs.  And he, in turn, may start to treat you better.  Every relationship has its peaks and valleys, and yours will be no different.

Keep the faith.  Hold your head high.  You are trying your best.  One day D will mature and comprehend everything you have done for him.  For now, when he stubbornly wreaks havoc on your day, try your best to remember the other people in long-term relationships with D’s of their own.  These people are survivors, fighters, dreamers, advocates, friends, coworkers, cousins, and so on.  They mean something to the people who love them, whether D is involved or not.  Listen to them.  Soak up their advice, their lighthearted takes on subjects like D that others do not understand.  Be strong for each other and you will all be okay.

Best of luck,

Ally

Dear Ally,

I hope you read my editorial.  You see, I have this boyfriend- let’s call him “D” for short.  We have been together for over two decades now.  You’d  think he would have proposed already, but in his usual fashion D always takes me on an emotional rollercoaster.  There are lots of highs and lots of lows.  Some days are okay, and those are the days where I think D isn’t so bad.  I mean, he loves me!  I swear he does!  People always look at us on the street together.  We have all the fanciest technology and we sport it around town wherever we go.  Some people stop me and say that they’re proud of us, of the relationship that we’ve built.  It’s not easy, they say.  But they don’t really know the reality of living with D.

D keeps me up at night a lot.  He is loud and needy and incessantly wants to eat.  In some ways it’s like tending to a child.  And then I have to go to work the next day, and then go to graduate class after work, and society tells me that I should not complain.  “D is not THAT bad.  There are always worse boyfriends to have.  Plus, my grandma dated a guy like D- haha D type 2!- and she just took a few pills to get over him.”  They don’t see that D makes me cry sometimes.  He can be a jerk, and he always acts up whenever something important is happening.  On the good days, he makes me laugh, though.  And I have found other people who also date D’s, and they have made me feel like we can do this.  They are strong people.  They are funny people.  They know exactly what to say to make me feel better about D.

What can I do to improve my relationship with D?  I am not ready to give up hope that we can work things out yet.

Sincerely,

Concerned Caregiver

Sun’s out, pump’s out.

99.987% of the time that I change my insulin pump, I deal with stubborn high blood sugars for a few hours afterwards no matter what I do.  It frustrates the heck out of me, but in some ways I don’t blame my body.  I’m sure its internal dialogue goes something like this with every new poke and prod: Why the efffff does this girl hate me so much?!!!  More to come on pump site changes later, but my simplified theory for the time being is that there is a learning curve where the body adjusts to the new site.  Whatever, it still doesn’t make it any easier to endure…

Anyway, I woke up this morning around 5:00 am to see that my BG had dropped to 180 after being in the 250s post-pump change.  Progress, but not good enough considering I wanted oatmeal for breakfast.  My bladder wasn’t happy, either.  As I dragged myself out of bed to get to the bathroom and to take a mini-correction dose of insulin, the light from the window attracted my eye.  Diabetes generally has horrible timing, but in terms of catching the sunrise, it was right on point this morning…

Sunrise