New Beginnings.

new pump

I’m looking forward to fresh beginnings today, as I just started with my new Medtronic MiniMed pump, which was overnighted to me to replace my older pump.  I know that I have been vocal regarding pump issues, but as with anything diabetes-related, the problems are incredibly complex and multifaceted.  While there will always be the occasional bumps in the road when it comes to technology that steps in for a malfunctioning pancreas, the sheer number of issues that we have experienced of late insinuates that there is another culprit always lurking behind the scenes: diabetes being its menacing self.

The repeated issues are not a direct result of anything that I am doing wrong particularly, nor anything that Medtronic intends to happen.  We are all in this fight together, and no one likes bad pump days.  Period.  We all just want to feel healthy each day.  I would like to especially thank Angie of Medtronic who has spent many hours on the phone troubleshooting with me and has been incredibly kind and patient through out this process.

Praying for a smooth transition over to the new pump…  I wish all of you other pumpers and non-pumpers a drama-free weekend when it comes to diabetes.  We’ve got this.

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.

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.

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…

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