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

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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

True Life: I’m afraid of spiders and insulin, in that order.

Without fail, every summer night when I go outside to get in my car, a few yellow spiders are hanging out on the hood and roof.  When I approach, they look at me as if I am interrupting their block party.  After catapulting myself into the driver’s seat a la Angelina Jolie in Tomb Raider, I give myself the “spider pep talk.”

“Ally, you are better than this.  It’s one moment in time.  Try to forget about them and get on with your life.”

If only the “take your insulin” pep talk was that easy…

Every type 1 diabetic understands the rocky relationship that we entertain with insulin.  We can’t live without it, but sometimes living with it makes the act of living really, really difficult.  Like the times when it almost kills us at 3:34 am with a blood glucose reading of 45 mg/dL when we inadvertently over-calculate the spike effect of pizza for dinner by bolusing heavily.  Or the times when we hit a bad pump site at insertion and the cannula kinks and suddenly we want to drink water out of a fire hydrant like dogs do in 1960s cartoons.  Those times, and any other times that insulin doesn’t work perfectly.  Which is almost every time.  Because. insulin. does. not. replace. a. normally. functioning. pancreas!!!!  As we have all heard many times before, insulin sustains life, but it is not a cure for diabetes.

I will delve further into my own struggles with insulin as we progress in our blogger-bloggee courtship, but for now just know this: I sincerely appreciate the discovery of insulin and how much diabetes technology has changed over the course of my 23 out of 26 years of life spent as a type 1 diabetic.  Every time I go to Joslin Diabetes Center in Boston, I look at the murals on the walls in the lower level of the building which depict some of the history of insulin, and I am so thankful to be a diabetic “now” as opposed to “then.”  But I also fear and respect this life-saving commodity for the abusive lover that it sometimes is to all of us.  I have a tendency to “under-bolus” because of the trauma that over-bolusing has caused in the past.  Whew- the hardest step is admitting that you have a problem, right?

We are stuck in an ongoing oxymoron of sorts.  We can’t take too little insulin or our sugar will be high; we can’t take too much insulin or our sugar will be low.  And many of us grew up with the dreaded lecture from (insert whoever is applicable for you) ____________ (doctor, parent, school nurse, etc.) if we did not perform flawless algebra to compute the correct “insulin to carb to exercise to stress to illness to social life” ratios every time we took insulin.

But you know what?  Once I admitted that the problem was there, a doctor looked me in the eye and told me that it was okay.  Hers was not a lecture of blame.  She told me that I could forgive myself, that I did not have to spend the rest of my days in self-imposed “diabetic timeout.”  She told me that it was normal to be frustrated, that trying to play the role of a perfect pancreas every day was “not a good look” because it was essentially bullying myself, giving myself that loathsome lecture that I never really deserved in the first place.  But why give yourself that negative commentary when you fully understand that diabetes is not so cut and dry?  You are not an outsider to the disease, so do not treat yourself like you are.

I understand that I have the tools to do this, to improve and maintain my health. Not carrying “survivor’s guilt” of sorts is difficult for all of us who put in 110% effort every day only to have diabetes knock us on our asses with a herculean effort when we least expect it.  What truly matters is that we have already entered the boxing ring.  We have given ourselves the “insulin pep talk.”  We have calculated the carbs in the 5 crackers that we snacked on and pressed a few buttons on our insulin pumps to account for them.  And if we forgot to do so, or if we mistakenly took half a unit of Humalog less than what we should have taken to achieve an ideal blood sugar goal, so be it.  We have tomorrow, and the next day, and the next day.

And we keep showing up at the boxing ring ready for a fight, which is more than most people can say…

Coffee helps diabetic eyesight? Count me in.

According to the Journal of Agricultural and Food Chemistry, drinking coffee may help protect diabetic eyes from retinopathy.  See the article here: http://www.battlediabetes.com/news/diet-and-nutrition/coffee-could-prevent-retinal-damange-in-people-with-diabetes.

And how do we take our coffee, everyone?  Oh, that’s right- very light, no sugar.  😉

Microsoft Word’s “Lost and Found” Bin

According to the record in Microsoft Word, I edited what would later become the bones of this blog post almost exactly one year ago.  It was a project for Faustman Lab at Massachusetts General Hospital for a Facebook forum titled “Share Your Story” to raise awareness for type 1 diabetes research at the Lab.  Crazy grad school hecticness must have gotten in the way, or for once in my life I may have been a little shy- I’m not sure, really.  But for some reason, I did not share my post a year ago. 

Today I feel differently.  Part of writing this blog is to be vulnerable- to take the chance that people might brush off my story, that some might laugh, that no one will care.  Something tells me that there are other diabetics out there who “get it,” though, and that hopefully this will resonate with some of you. 

 

It was a simple question, really.  “Come on, Ally, you’re going to have a bigger piece of cake than that, right?!!”

I had just met Kate a few minutes earlier upon arriving at a birthday party for our mutual friend, Sean.  Kate clearly meant well, but she had no idea what she was really asking.  She was unaware that I had been eyeballing the frosting from across the room as if it was some sort of monster lurking in our presence while I calculated the sugar content and the havoc a few bites could wreak on my body.

Kate had no idea that my blood sugar had been double and triple the normal levels all week thanks to a head cold and the usual pump problems of bad insertion sites due to scar tissue build-up; no idea that it had been hard to focus at work but I had no remaining sick time coverage; no idea how much a “ketones hangover” can put the aftermath of any college fraternity party to shame; no idea how guilty I felt after snapping at a well-intentioned coworker who happened to cross my path in the midst of a diabetes-induced temper tantrum, which included flinging a few pens at the walls of my cubicle as they closed in on me; no idea that I would spend my Friday evening unlike almost all of my twenty-something year old peers: setting alarm clocks during the night to deal with the anticipation of a blood sugar crash; and no idea that the next day my pump would kink while traveling and I would have to find an abandoned shopping plaza for some privacy to change my pump site and shoot up insulin.

She had no idea that after all of that- about 15 hours in the life of a type 1 diabetic- many nights I go to bed thinking, You should have done more!; no idea that society, even close friends, seem to imply that it is your fault when your control lapses.  Just avoid candy bars and life should be easy, right?

 

My good friend, Jessica, knew what that larger piece of cake might entail for me, and quickly intercepted any further questioning from Kate with a stern, “No, just no,” shaking her head.

Kate, a bit bewildered, thought better than to pursue the topic and shrugged it off.

Most days, I would pounce on the opportunity to discuss type 1 diabetes with those willing to listen.  I probably would have displayed my blood glucose meter, explained how diabetes has affected my life and the lives of my loved ones, with careful emphasis on how much technology has changed things for the better during the course of my twenty-two years with this disease.  Then I would have described how people like Dr. Faustman and her team at the Faustman Lab have been a reason to keep waging the good fight against diabetes, and how they top my long prayer list each morning and evening.  I could go on to describe people of all backgrounds, those who traveled from Seattle or Mexico or right down the street in Newton, Massachusetts, who I have witnessed over the course of hundreds of endocrinology appointments, all coming to the Boston area for the common goal of improving the health of their family members at the best hospitals in the world.

Alas, tonight was supposed to be a relaxing occasion, a time to enjoy nice company and to forget the stressors of the week, whatever they had been.  Yes, I could have gotten on my “diabetes soapbox,” but I opted not to for the sake of Sean’s birthday.  Instead, I scooped up a forkful of my tiny sliver of cake, pressed a few buttons on my insulin pump, and took a bite, savoring the sweet chocolate flavor.

Everyone has his or her cross to bear.  I do not blame Kate for asking an innocent question that happened to touch upon my cross during a rather difficult day.  I truly hope that she has the freedom to live her life without ever having to contemplate why a large piece of cake might be a negative thing; it should not have to be!  I am confident that one day my future children and grandchildren will enjoy that same freedom and can go back for seconds, without a care in the world, whenever birthday cake is served.

 

With sincere thanks to Faustman Lab for all that you do,

Ally