2.

My 2-year-return-to-insulin-shots-anniversary came and went a few weeks ago.  The anticlimactic day was all the validation I needed to know that this was the right choice for me.  I no longer count down the days, weeks, or months on shots; they are my new normal until I switch things up again or diabetes is cured.

People probably wonder why I still harp on my defective insulin pump saga, and the truth of the matter is that one can talk as much or as little about trauma as one sees fit.  Medical trauma is particularly cruel; our already-limited “control” further fades away as our cells cry out for insulin.  I continue to harp on this because the wounds are still fresh, however many years after the triage.  Yet the bandages of an engaged healthcare team have eased the pain, and I finally feel better.

Two years ago I feared that I would die of ketoacidosis while sleeping on my couch.  I worried that the graduate school experience I had always dreamed of might slip between my fingertips.  Or worse, that the mental desperation would become too much- that in my attempts to be heard my voice would eventually fade away.

Multiple daily injections (MDI) are not always pretty, but they are a guarantee that insulin is getting into the body.  MDI is literally and figuratively another shot at life.  (More to follow, but not everyone has this guarantee currently; they deserve a chance, too.)

Two years later and I have successfully completed my Master’s degree.

I flew to California twice to participate in Stanford Medicine X.

I didn’t die on my couch.

And I was too busy living to remember that it was my 2-year Shotoversary.

Insulin makes it happen.

graduation-tulips

 

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“I never meant to make you cry, but tonight / I’m cleanin’ out my closet.” -Eminem

My apartment could easily get selected for a TLC special entitled Hoarders: The Diabetes Edition. I have mountains of old supplies stocked up just in case the apocalypse ever occurs and I for some reason need a 6-year-old infusion set for an insulin pump that I no longer utilize…  (Note: Proper medical guidance instructs never to use expired supplies.  I am in no way recommending that you do so.)

I have trouble discarding diabetes supplies because they represent my lifeline, even if they are expired.  The thought of running out of supplies freaks me out.  Temporary relief arrives when my mail order pharmacy prescriptions knock at my front door, providing life in predetermined 3-month packages per my insurance provider.  But what if I drop and shatter a vial of insulin accidentally?  I may need my fridge stockpile to get me through until my next order.  Most of us are privileged enough to obtain medication through various means, however much of a longwinded telephone loop-de-loop headache that process may render.  If we lived somewhere else or during some other time, we may not have been able to count these blessings.  My bedroom’s diabetes supply closet is a constant reminder of this privilege.

There are certain items that I can’t bring myself to throw out, but probably should.  I returned to multiple daily injections in December after going through the hardest time of my life- a period in which the only type of infusion set that would work with my body type just so happened to have a product defect in multiple lot numbers.  I spent a majority of my time on the couch chasing ketones and brainstorming with insulin pump company representatives and my medical providers as to how we could correct this problem.  I fought going back on shots tooth and nail, bitter that an infusion set component measuring only a few centimeters long could have such dire effects on my health when it was not functioning properly.

“My quality of life will be ruined on shots!” I exclaimed.

“Can you honestly tell me that you have much quality of life right now?  You’re on the couch with ketones every day fighting for your life,” my wise doctor replied.

And so I finally caved and returned to a Lantus and Humalog regimen.  It was rocky at first, but I am now enjoying my time (mostly) ketone-free.  The blood sugar management still has its ups and downs, an inherent trait of type one diabetes.  There are days when I miss the insulin pump’s fine-tuning aspects wholeheartedly.  I still glance down at my waist to check the time on my pump from time to time, only to discover that what was once such a major part of my life is not there any longer.

When I first transitioned off of the pump, my resentment was palpable. Screw you, pump! I’m moving on! This was a mental game in which I tried to convince myself that this was the right move.  A majority of modern day diabetics use pumps, and I felt crazy that this was not a viable option for me.  Yet time and time again, my infusion set changes proved that this was not working for me personally.

Subsequently, I grieved the pump’s loss under a mask of anger and sarcasm.  During some particularly emotional days, I still think it’s Halloween mask time.

Yet after this struggle, there remains a part of me that cannot bear to throw out the pump supplies.  They have defects, so I cannot donate them to charity for fear of putting someone else through ketone hell.  Instead, they crowd my coat closet by the front door, my bedroom closet from floor to ceiling, the space under my bed, and other spots below stacks of grad school books. I might need these supplies again one day, right? They are a lifeline to another time, another method of managing this jerk of a disease.

Perhaps I will try again.  Not yet.  But perhaps.  The pain is still too raw and we still have too much work to do on the shots before a new decision can be made.

I would be lying if I said that I am not still processing my frustration and disappointment in the entire faulty infusion set situation.  Heck, I’ve certainly blogged about it enough.  But I am more cognizant of the concept of forgiveness and enjoying the present moment now.  I saw firsthand how quickly health can change, what it feels like to watch yourself dwindle away into nothingness.  If it was not for determined doctors and nurses who believed me and did not give up, I may not still be here.  But I am here, so I need to make the most of this life.

Just in case I ever need the insulin pump collecting dust on a shelf, its infusion set and reservoir packages will decorate my room for now.  Whenever I move to a larger residence, I will box them up and put them in a storage closet, packed away neatly with the other memories of my life.  Out of sight, out of mind.

Honestly, though, whether insulin pump enthusiasts or shots supporters, we do not need bigger apartments with huge walk-in closets.

What we really need is a cure.

pump boxes

I Can Because Someone Believed That I Could.

I was running late one day during junior year of high school and our Spanish teacher, Ms. K., questioned me in front of the class.

“Why were you late again, Ally?”

“Umm… we got out of Math late today.”

“Fair enough.  And who is your Math teacher?”

“Mrs. H.”

“Okay, I’ll chat with Mrs. H. later on today.”

Umm, what?!!  Well, there goes my great excuse!  Mrs. H. knows that we were not late today! 

As my classmates filed out into the hall at the conclusion of class, Ms. K. held me back, deciding to give me one more opportunity to come clean.

“Ally, why were you late?  For real.”

“I didn’t want to say it in front of the class, but I was having issues with my blood sugar,” I replied, staring at the floor.

“I’m so sorry.  I wasn’t thinking of that earlier.  Anytime you have to leave the classroom and do whatever you need to do- please just take care of yourself, okay?” Ms. K. responded, suddenly concerned.

“Okay.  I’m sorry again.”

When I tell that story to my coworkers, I usually tell it as a joke.  In my head I know full well that it is a rationalization: Hardy har har, see, diabetes comes in handy sometimes!

The truth of the matter is, being so far removed from that incident in high school, I’m not entirely sure what actually transpired when I look back now. My best guess is that diabetes became a convenient excuse when I saw that I was going to be disciplined; there was not a major diabetes emergency going on that made me late for class. In that case, I owe Ms. K. a coffee/beer with my apology the next time I see her.

At the same time, did diabetes sometimes make me late because I had to make an extra stop at my locker to check my blood sugar, or go to the bathroom when my blood sugar was too high, or scarf down a granola bar when I was low? Absolutely. The mature thing would have been to discuss this with my teachers beforehand so that they knew that I was trying my best. Alas, I was a dorky high school kid just trying to fit in.

You are in the driver’s seat of your life; diabetes is just the pesky younger sibling trying to hang out with the cool kids. Do not let diabetes be the excuse that gets you out of detention. If you mess up, take responsibility. But also recognize that diabetes does like to throw some wrenches into the mix of life, and you should be upfront with those who may need to understand. Tell your teacher or your boss if you are not feeling 110% one day and need to take a breather outside. I wish that I had fostered that discussion in hindsight.

In grad school I have been blessed with professors who have taken a keen interest in my academic development. I am open with them about diabetes because I am more comfortable in my own skin now compared to high school. On the particularly rough days with my insulin pump problems in the fall, my instructors showed me selfless compassion. They respected that no matter how sick I was, I was going to get my work done on time and do it well. (Something about stubborn Italian pride, right?) Yet on many occasions, they held me back after class- not to scold me for being late, but to make sure that I was okay. Every ounce of hard work that I put into my degree is a reflection of the confidence that my instructors hold in their students’ abilities.

I can.  You can.  We all can.

I can because academic instructors believed that I could- diabetes and all.  In the process, I started to believe, too.

gpa

Sticks and Stones and Words

Many thanks to Douglas @salguodmai for being a supportive member of the #doc during the initial stages of writing this. And have I mentioned that he runs more miles in one weekend than I probably have in my lifetime?!  Inspirational!  Also, here’s a big shout out to Scott @Scott_InTheD for his Quotes that stick blog post, the concept of which I am borrowing here (with a somber spin on it- you’ve been warned!) with his permission.

“Sticks and stones may break my bones, but words will never hurt me.”  Maybe on Opposite Day?

Diabetes scares the people who love us on occasion. In moments of weakness or misunderstanding, they may say things that hurt us, often unintentionally. This blog post has been batting around in my head for a few weeks now, and my inner English major keeps reminding me to let it out.

Words from others are only words. They do not have to define us, but they may explain things like the subliminal pain masked by epic Twitter rants or the irrational self-blame that we impose on ourselves when the CGM graphs look like Mount Everest.  It’s sometimes there in the background, that internal voice that says you’re not good enough. The truth is that you are doing your best despite a rather difficult job as a substitute pancreas. Choice of words perhaps clouds this idea.

To quote Jay-Z, “Allow me to reintroduce myself.” Or at least to explain where I’m coming from on the bad days.

*****

“You’re a straight-A student, but you still can’t get it through your head!”

You’re right. I should have bolused more and eaten fewer carbs. But guess what? I’m going to be diabetic for a long, long time, and there’s always tomorrow. I messed up at a disease where you can give 110% and still not see the results that you want to see. I could do without the lecture.

^ That’s what I should have said. In reality, I probably walked away, did my homework to maintain those A’s, and hid my tears. And for the record, I’m still a straight-A student in grad school, and I still can’t get it through my head. But I know now that trying counts for a whole lot.

 

“If you didn’t eat _____, your blood sugar wouldn’t be 400.”

Because everyone loves a blood sugar value of 400…

 

“It IS your fault!”

No, it’s really not. My diabetic relative was simply trying to maneuver through a social setting, forgot about this pain-in-the-ass illness for a few minutes, and didn’t bolus until after the meal. You try doing this job and see how you like it.

 

“If this was Survival of the Fittest, you’d be long-gone by now.”

At the time, I laughed with the rest of the group. We were naïve high schoolers and the joke was not as tasteless as it looks on paper now. But there is that element of survivor’s guilt that still lingers. What if I had been born in another place or another time? He’s right; I wouldn’t have survived. But am I not ‘fit’ to survive as one of the ‘fittest’ now?

The consolation is that it isn’t another time, nor another place. It is here and now. I’m here. You’re here. Right now. We have survived as type one diabetics. It’s not a question of Why? but a question of What are we going to do with this life? We’re all doing a decent job in my book.

 

“Tons of people use the insulin pump. You’re the only one who had the problem, so it must be you.”

Look, diabetes is a blame game in society. We all experience this to some degree. What hurts is when people you love, who you’ve explained this to a million times before, take the cop-out option here. It’s easy to shrug pump problems or whatever it may be off on the user, the person with diabetes. None of us should ever have to defend actions we take to preserve our health, however unconventional they may be.

What I really want to say to you is that we both love each other. I do not want to keep rehashing the difficult stuff. You should inherently respect the decisions that I make regarding my own health. I may never know exactly why my pump problems happened, but they did. And every doctor and nurse involved came to the same conclusion: the issue was not caused by me, but by the product. I don’t want to have to prove it to you over and over again.  I have moved forward, and I would like you to move along with me.

 

“I’ve learned a lot from watching you handle your degenerative disease.”

Who said it’s degenerative? Not me.

Sure, there’s the term “complications” which none of us like to hear. But the good news with diabetes is that it doesn’t always have to be “degenerative.” We have a lot of tools in our toolboxes at this stage of the game. These tools enable us to potentially live better than those with diabetes in the past may have lived.

Diabetes will never be a walk in the park, for me at least, but I refuse to go down without a fight. And I also know that if it does become “degenerative,” it is not my fault. It will hurt, yes, but it is not my fault. There are too many outside factors that affect diabetes to hold myself solely accountable. For starters, I’m snitching on faulty islet cells, stress, hormones, inaccurate carb counts, exercise, not enough exercise, and many more variables which are all guilty as charged. But heck, there’s nothing “degenerative” about a heart and soul that refuses to stop fighting the good fight- whether we are speaking about diabetes or any other challenge. Keep doing your thing, #doc.

 

“If I were managing someone else’s diabetes and could take insulin freely with no personal repercussions [hypos and hypers] experienced, I’d be a good diabetic.” -Me

“Are you aware of your language?” –My doctor

What? I didn’t swear, did I?

“Good diabetic” and “bad diabetic” don’t exist. There is the diabetic, or the person with diabetes, or whatever you choose to call yourself. There is the human being, who is more than diabetes. But let’s lose the self-destructive adjectives. There is only the doing-the-best-I-can-diabetic.

 

“Camping. Soccer in Montreal. St. Patrick’s Day Parade. There are so many things that I still want to do with you.”

My former college roommate said this genuinely and nonchalantly. We were planning future trips with friends and daydreaming of warm summer weather. What resonated with me was how much I wanted these things, too, and how far away they had seemed a few short months ago when it felt like diabetes had the upper hand. There are so many things that I still want to do with my friend, and with others, too. Thankfully, I’m going to be around to do them now, whether diabetes likes it or not.

 

“You’re not saying you can’t do something. You’re asking for help. We all do it. It’s life.” -My boss

Wait, I’m not weak if I ask for help? (Sarcasm)

Also, you are a really cool boss. (Not sarcasm. That was a significant learning moment for me.)

*****

My doctor and I are working on this thing that we call The Wall. Sometimes I let her remove a brick from the wall with a tiny chisel. Other times I try to deflect attention away to something of lesser pain value.  I email her when I take a big bolus, a number that would have frozen me in fear in the past.  A few bricks tumble down.  We cheer via email and smiley face emoticons.  Slowly but surely, our masonry skills are improving.

The Wall impacts how I feel about and handle my diabetes management at times. It’s a learning curve, and there are days when I am not proud of my behavior or my attitude. There are disheartened tweets which I later feel guilty about. Curse words may be said to people who I care deeply for. Feeling sick is no excuse, but sometimes feeling sick negatively affects my emotional inhibitions.

I joined the #doc with the promise of being transparent, so I’m confessing my stumbling blocks here and giving my written word that I want to work on this. I hope to one day sledgehammer the stumbling blocks- rather, the bricks- into smithereens.

If this post rings all-too-familiar to you, I want you to know that you can be a straight-A student and still not get it.  Please know that it is okay.  You are smart, not dumb.  You are a fighter, not a failure.

Maybe diabetes is not yet meant to be fully understood? Just show up every day and work on it. That’s all anyone should ever ask of you.

 

Weird.

Today was weird.

It started off with getting called to the front of a 200-person meeting to participate in Dance Dance Revolution.  My coworker won the dance-off, but now the whole office knows who the real #LeftShark from Katy Perry’s SuperBowl halftime show was.  (That would be yours truly).

006

Later I discovered a 300+ blood glucose reading at lunch and a blood test confirmed some ketones.  Yikes, considering we had another meeting on the way.  No more Dance Dance Revolution for this girl, though!  I felt like this lizard that I encountered on a recent trip to Florida, as in Leave me the heck alone, intruders! [in this case, ketones].

009

I bolused quite a bit and played the “wait it out and let the insulin do its job” game, otherwise known as “patience is a virtue, but it’s really freakin’ difficult when you don’t feel well!”

Trusting in insulin after all of my insulin pump drama in the past has been a challenge for me.  I’m still getting accustomed to the idea that when I bolus, insulin generally does something.  Before, it was not always the case.  Today, it did its thing, although I’m still running too high.

Tomorrow we shall try again.  Bring it on.

Pros and Cons, Do’s and Don’ts, X’s and O’s

001

I could write a 200-page manifesto about the ups and downs of 2014 while insulin pumping and then transitioning to shots, but for the sake of not straining our eyes by reading a mile-long exhaustive blog post, here are some main points worthy of highlighting:

Pros of Shots:

  • I know with certainty that insulin is getting into me.  A reliable insulin delivery mechanism is something that I will never take for granted again.  There is something to be said for a good, old-fashioned jab with a syringe.  Plus, ketones have packed up and moved out for now.
  • The mental relief that this offers is difficult to articulate.  We are slowly but surely building back trust: a trust in insulin that it will do its job, a trust in eating a nutritious meal and knowing that insulin in my body will cover that food, a trust that I will not wake up in the middle of the night in a ketonic state, and- frankly and in violation of the “double negatives rule”- a trust that I will not not wake up one day due to ketones.
  • Trusting in the doctors’ knowledge:  While taking over twenty units of long-acting insulin such as Lantus after a decade of pumping might not be a big deal to some diabetics, for me it was a huge mental mountain to wrap my head around.  Multiple doctors chimed in throughout this process, thankfully.  One in particular yielded emails at all crazy hours of the weekend.  And the other reassured me over the phone that I would be okay, her voice calm and confident.  On the first day of injecting, I said a quick prayer and reminded myself that these doctors went through graduate and medical school and have been doing this for many years; I had to believe in their expertise.  So far, they have proven that they know their stuff!
  • Taking long showers without rushing to get out and reconnect to life-sustaining medical equipment.
  • Only one insertion (Dexcom) about every two weeks.
  • Wearing only one site (Dexcom).
  • Crossing a “Never Have I Ever” trump card off my list- at least if playing with other diabetics.  (I never liked that game, anyway).  “Never have I ever given myself an insulin injection in the stomach…”  Oh wait, I just did it three times today without flinching.
  • Finding the humor in the situation.  For example, shooting up at a rest area recently while a horrified mother spotted me and promptly peeled out of the parking lot, the wheels of her minivan screeching, after she unfairly assumed that I was a heroin junkie.  Far from it…
  • I don’t need a behemoth-sized-suitcase filled with back-up pump supplies when I travel.
  • Trying new things:  Even three months ago, I never would have consented to trying a different way.  I have the #doc and some very patient, compassionate doctors to thank for renewing my strength and for holding me up on the bad days.
  • Honesty.  This process has made me more upfront with myself and my doctors.  For years, I skirted around the issues, felt trapped in one method of diabetes treatment, and perhaps did not accept how multifaceted my insulin pumping problems had become.  No one likes to feel desperate, but I can see in my old blog posts, emails to pump reps, tears cried to my doctor, and so on that what I was doing on the pump was not working as optimally as it is intended to; hence, we needed to at least try something else.  A few weeks later, here we are…

Cons of Shots:

  • I’d be lying if I said I didn’t miss the pump (very strong emphasis on the “good pump site” days).  The stability in my blood sugar was better on the pump, but perhaps some of the severity of the recent “shots rollercoaster” is the fact that it’s only a few weeks into the trial and we have a lot of insulin dosing details left to address.
  • The pump is much more convenient.  Out of habit, I still reach down to my side to take a correction bolus with my invisible pump friend, only to find him missing in action.  I am in the process of waiting out an insulin pen prescription, and I hope that this makes things a bit easier in the day-to-day aspects of shots.  Currently, I prefill some syringes with typical Humalog doses or I manually fill the injections, making it a somewhat timely and tedious process.
  • Shots require more thinking.  I have to really focus when I draw up the amounts.  I quadruple-check that I have drawn up twenty-three units of Lantus, rather than Humalog.  (My doctor recommended using nail polish on the insulin boxes and bottles to help differentiate between them.  I know that there are colored lids, ties, etc., that you can also purchase.  The bottom line is that you want something that will catch your eye and make you focus on taking the correct type of insulin).
  • Where, oh, where, have my temp basals gone?  Plus one for the pump in that regard.
  • Once the insulin is in you, it’s in you for the day.  Currently, I take one Lantus dose daily, but we may transition to twice a day for some fine-tuning.  I am too high during the daytime, but at night I crash harder than a college kid at her first keg party.
  • Bruises.  Lots of them.  My hand-eye coordination has always been a bit defunct (i.e. my kindergarten teacher sent a note home telling Mom to have me practice cutting and coloring in-between the lines over the summer).  Perhaps this deficit is why I simply suck at shots.  It’s the opposite of “you can give it out but you can’t take it.”  Actually, I am pretty darn good at taking shots without any tears, but when it comes to giving them, the “stab repeatedly” method doesn’t work so well.
  • Lantus burns.  It’s not excruciating, but it’s there.
  • Socially, it’s either inject in public, or scurry off to the bathroom for every injection.  Because I find that I really have to concentrate when taking Lantus to make sure I’m drawing up the right dose, of the right medication, at the right time, I often take that shot in the bathroom at work so that I can have some privacy to focus.  I do not have much shame about taking injections in public, but it is more the “always having to have the diabetes conversation” element that I sometimes would rather avoid.  However, I have done many injections in my abdomen at work and in the local coffee shops, and no one has noticed.  On the plus side (I think?), my friends are eager to puncture my skin with a needle whenever they can have the chance; so far, I trust my mediocre injection skills over theirs.

Do’s of Shots:

  • Consult your doctor(s).  Consult the diabetic online community.  Weigh your options.  Take action if you are ready to try something new.
  • Write down all your pump information, such as basal rates and carb ratios, so that you have it handy if needed in the future.
  • Tell someone what you are doing.  Transitioning from the pump to shots after many years of pumping is scary and it is an educated-guessing-game under the guidance of medical professionals, as most diabetes-related things are.  During this time, there is a slightly-elevated risk that something out of the ordinary may happen, such as a severe low blood sugar due to an inadvertent insulin dosing mishap.  I emailed a few friends at work one day when I was not feeling well, on the off chance that an emergency did occur; I told them the name of my diabetes clinic and some basic information about my transition back to shots, on the very rare chance that I may not be able to articulate these facts myself to an emergency responder if a bad situation occurred.
  • This is another reason to have proper medical identification.  You can read more about this under disclaimers and disclosures, but MedicAlert has served me well for over twenty years.  I feel comfort in knowing that my medical and contact information is stored in their database, and that if I were ever unconscious an emergency responder would know that I was type one diabetic simply by reading the back of a MedicAlert medical identification bracelet that I wear at all times.
  • Restock on supplies: glucose tabs for the car, juice at the office, etc.
  • Understand that you may require more insulin in your boluses than you currently do on the pump.  My correction factors and insulin to carb ratios have changed significantly as we iron out the Lantus details.

Don’ts of Shots:

  • I do not regret trying shots.  My doctors and I were ready to do this in this moment.  In hindsight, however, I picked a rather difficult first week to test out multiple daily injections again.  Guys: You’ve been warned.  The next few sentences discuss female stuff.  #sorryimnotsorry 
  • A few days prior to the beginning of my cycle, my hormones seem to have an epic party where they are up all night chugging Red Bull and taking vodka shots within my body.  My blood glucose refuses to budge from its perch high atop the elevated blood sugar peak, despite increased insulin doses which are sometimes quadruple my normal amounts.
  • Dealing with this frustration on top of re-learning shots, as well as having planned a purposely-conservative Lantus dosage with my endocrinologist for the first few days just to be safe, created a high blood glucose dilemma for us.  I was stuck in the 300s and 350s for days on end, and was more or less feeling miserable.  Once the hormone block party subsided, things evened out a bit and I began to feel much better.  So, for the ladies, I would recommend planning around the week of your cycle if you are interested in transitioning back to shots anytime soon.
  • Don’t switch back to shots solely because you do not want to be attached to a medical device at all times.  To be honest, I have not felt an overwhelming sense of “freedom” being without the pump; in fact, I miss it for its good aspects quite a lot.  It was cool for like, a day, to have one less site to worry about while showering, but all in all, this should not make or break your insulin management decision.
  • Don’t throw in the towel quickly.  I’ll admit, I was ready to do so based on the first few days of non-stop highs.  I verbally committed while on the phone with my doctor to try for a week, and then I tweeted it out to make sure I held myself to that goal.  On the first week of the trial, the stubborn Italian part of me was not going to give up until Saturday, which would mark the full seven days of shots.  On Thursday, I emailed another doctor and asked the question that I wasn’t answering for myself: “So, I should try this shots thing for more than a week?”  She encouraged me to continue with the shots.
  • I was looking for her affirmation and for someone else to make the tough call, and I am happy now that she gave me the tough answer.  It was a difficult first week, but by the second week it was infinitely better.  Now on the third week, we still have things to tweak and my blood sugars are far from stellar, but I do feel better and there is insulin getting into my body.
  • The back to the basics, simple things about insulin are now appreciated more than ever.  I take a shot and I watch insulin do its thing.  In that regard, I am truly blessed to have access to this life-sustaining medication and to doctors who can tell me how best to use it.

X’s and O’s:

Consider this a big virtual hug to each of you for being my sounding board during a trying time in my diabetes journey.  Knowing that someone out there was reading this and perhaps going through a similar trial, receiving innovative suggestions to insulin management, perusing your blogs and tweets, and overall feeling the strong sense of community is what made the hardest part – taking the first step, or, in this case, the first shot – totally worth it.

My long-term plan is to continue this shots trial for another month or so and then perhaps switch back to the pump with reduced pump basal rates and some background injected Lantus basal as a precaution for faulty-pump-site days.

I feel blessed to have made so many friends in the diabetic online community and to have a health care team that has steadfastly worked to make me feel better.  One day many months ago, when my head spun from ketones-induced nausea after another failed pump site, I thought to myself, Maybe I should start a blog?  There must be someone out there who “gets it,” too?  Today, having been encouraged to fight for my health through the inspiration of the #doc, I lift my very light, no sugar coffee cup to you.

Thank you…

XOXO,

Ally

Housekeeping

002Sure T Insulin at Connector Site002

Before I publish a lengthy manifesto on the pros and cons of insulin pumping versus injections in regards to my recent switch over to shots, there are a few long overdue housekeeping details that I would like to highlight for those interested.

1.)  Meeting of the Diabetes Minds

Around Halloween, I had a big appointment with an insulin pump representative and my nurse.  My doctor also sat in during her lunch break.  I know that it was around Halloween because I brought a bag full of insulin pump supplies as well as Halloween cupcakes coated in frosting (see above) as sustenance for those who were kindhearted enough to meet with me on their free time.  So, it was a meeting of the multifaceted diabetes minds, fueled by large amounts of sugar for those with properly-functioning pancreases.

We went through every scenario, including a live insulin pump site change.  They all nodded their heads in agreement when I showed them how Humalog bubbled up quickly in the reservoir.  We were all baffled as to why the Sure T infusion sets continued to pool insulin at the connector site.  And so on.  Basically, we knew there were problems, and we had to try to tackle them each individually.

2.)  Sure T infusion sets

Regarding the Sure T, I have said it before and I will continue to say it: I like Medtronic.  Their pump rep nurses were as gentle as possible when we did the “human pincushion” trial and error game of inserting into different sites during appointments over the past two years.  Those days were not easy for any of us, on a mental and physical level, but their confident reassurance that it was going to be okay is something that I will always carry with me.  Medtronic’s customer service is timely, polite, and helpful.  One manager in particular has logged dozens of hours on the phone with me while we documented and troubleshooted what we believe to be a rare Sure T product defect.  Medtronic has sent me various lot numbers of Sure Ts to try, and I have sent them back my problematic sets for analyses, the results of which are still to be determined.

In a nutshell, we have tried repeatedly to make the Sure T work for me, but maybe the Sure T doesn’t like people with very light, no sugar coffee orders.  Sure T might perform better for a different diabetic coffee enthusiast on a different day.  You tell me.

The recent product warning sent out by Medtronic is believed to be unrelated to my issue.  See image above; note that insulin droplets pool at the connector site and do not get into my body.  The proof is in the sugar-free pudding: after many site changes, subsequent ketone spikes, stubborn high blood sugars, and droplets of insulin falling out at the site, we have decided to hold off on using the Sure T until new lots are manufactured in the future.  Although I like the steel needle aspect of the Sure T, as bent cannulas cannot occur, if/when I transition back to the insulin pump after doing multiple daily injections for awhile, I will most likely give the Medtronic Quick Sets another try.

Whenever I switched a Sure T site out, I always ate low-carb for a few hours afterwards in case the insulin was not getting into me.  My fear is that someone who is unaware of this risk might consume a big pasta dinner and have an infusion set failure unbeknownst to that person, leading to a very dangerous situation very quickly.  I disclose this information so that you are at least aware of this potential problem if you also use Sure Ts.

Note: If you experience any insulin pump problems, please contact your respective pump company so that they can document the issue and investigate safely.

3.)  Bubbles in insulin pump reservoirs

I detailed this extensively in Broken Record, but to summarize briefly: These were more than champagne bubbles, they blocked proper insulin delivery, and they caused blood sugar to stagnate at high levels until the problem was identified and the reservoir changed out.

A Facebook user recommended that I pre-fill a reservoir a day before an expected site change, let it sit undisturbed to allow big bubbles to settle, and then prime those bubbles through the tubing on the day of the site change.  For some reason, letting the reservoir sit for a day helped immensely.  I also found that Novolog produced bigger bubbles which were easier to eradicate than Humalog’s millions of feisty bubbles which had a knack for procreating over time.  Get a room, Humalog love birds!

Please note that this trick is not recommended by pump companies, as insulin has been shown to lose efficacy over time in the plastic reservoirs.  However, given the frequency and degree of problems I encountered with pump site changes, I found that pre-filling the reservoir was a risk I was willing to assume, and I was always cognizant and on the look-out for problems related to this risk.  So far, the benefits have outweighed these risks.

I hope that this update is helpful to anyone who was curious about the possible solutions identified for my insulin pumping problems.  Thank you again to all who offered encouragement and advice along the way.  More to come soon with a post chronicling the transition back to insulin shots.  Yeehaw!