Reese’s Cups and Hamster Wheels

I first fell in love with memoir as a junior in high school during a course aptly titled Rewriting A Life.  There, I was introduced to the work of Mary Karr, and to this day I soak up her words like a sponge absorbs a misplaced glass of cabernet: fully, and scattering droplets where they are most needed (the only clean part of the carpet, for example).

Here’s a droplet:

When you’ve been hurt enough as a kid (maybe at any age), it’s like you have a trick knee.  Most of your life, you can function like an adult, but add in the right portions of sleeplessness and stress and grief, and the hurt, defeated self can bloom into place.

-Mary Karr

That’s sort of how I feel lately.  The perfect storm of life stressors- past, present, and future- has left me questioning my moral successes and failures, my worthiness as an advocate, and where to go from here.  The answer is that there is no black or white response- only more questions, and more places to go.  The best work I can do at the moment is simply to voice this.

I am angry that our fellow people with diabetes are dying because insulin is inaccessible and ludicrously expensive.  I am angry that the people who can afford insulin- myself included- are under the constant pressure of maintaining positive disease outcomes with rusty toolboxes.  I am angry that we do not have a cure.  I am angry that we are so fragmented as a community, that when we voice dissent we are quickly hushed by the status quo of comfortableness and the diabetes industry- luxuries that so many others do not have.  Finally, I am angry that I am angry, that I have scapegoated much of my anger on diabetes, and that I have not always handled life’s difficulties with the grace and dignity that I know dwell within my heart.

However, I am grateful that despite the bad stuff, there are friends and supporters who still believe in the good stuff.  Their love has never wavered, and has inflated into a life raft when needed most.  (Thank you).

Rewriting A Life does not mean you get to copy and paste a Cinderella ending to your story.  You simply get to live it, and to describe the good and the bad in detail that has the potential to resonate with someone else who desperately needs to hear you.  Perhaps you desperately need to be heard, too.

Recently, emotional and physical health have felt like running on the hamster wheel while nursing a sprained ankle and a hangover.

So, I switched things up and adopted a guinea pig.

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This is Reese.  She is colored like a Reese’s cup.  

She is currently petrified of me, but I hope the same thing that I hope for you, or me, or any living creature: that she feels loved nonetheless.  

 

 

 

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Ally-gator Scratching for Answers

A few weeks ago, I attended some follow-up appointments at Mass General Hospital (MGH) in an effort to identify allergies that may be triggering an inflammatory response in my body.  In other words, #JustSayNoToKetones, random fevers, crappy BGs, and the typical symptoms of a type 1 diabetic’s response to the dreaded “normal person sick” (NPS).  A WordPress glitch is not allowing me to link to content tonight, but the background to my MGH visit can be found by searching for the blog post “Sleuthing” on verylightnosugar.com.

In April, a scratch test confirmed what we already knew.  I am allergic to the following culprits.  Do not let their pleading-innocent faces fool you in their mugshots!

 

 

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 #WhoMe? #TootsieWithTheGoodFur

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#FreeAceDog

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’16 Bonnie & Clyde

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Scratch test and shoe game

We scheduled more intensive allergy patch testing in June, in which potential household irritants are temporarily placed on the skin to elicit reactions and identify allergy triggers.  I visited MGH on Tuesday, Thursday, and Friday, logging hundreds of miles on my car and refreshing my memory on just how difficult Boston traffic is in the summer.  I averaged 2 hours on the way there and 3 hours on the way back to Rhode Island due to traffic.

On Tuesday, a nurse placed the patches on my back.  She carefully explained each step in order to keep me calm and informed.

“Now I am going to clean the area… Now I am going to dry off the area… Now I am going to place the patch.  It’s like a big sticker… Now I am going to secure the sites with tape… Now I am going to draw around the sites with marker so we can track the reactions and the locations… You may feel a little itchy… Do not get the sites wet or super sweaty… Try not to scratch so we can examine things clearly when you come in again… Call us with any problems…”

“That’s it?  I’m free to go?!”

And off I went for 48 hours of fun.

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I’ve always wanted to say that a crocodile, an alligator, a Great White Shark, a mountain lion, or a bear bit me.  Seize the day, folks.

The sites were a little itchy, but nothing unbearable.  In true diabetes form, my skin was more agitated by the medical tape than anything else.  Eventually I could tell that a baseball cap and perfume overload were not going to cut it; I needed to wash my hair without getting my back wet.

The first attempt in the kitchen sink resulted in me inadvertently mopping the floor with my soaking wet hair.  I moved on to the shower, my back carefully padded with towels and sweatshirts to avoid contact with water, which would jeopardize the test results.  I craned my neck into the stream of water and scrubbed as best I could.  The next day resulted in a “hat day” as well, my hair a total Punky Brewster disaster.  Shout out to the Betes On Tap crew for sitting next to the smelly girl at happy hour.  You are good for the soul.  🙂

On Thursday, I returned to MGH for the patch removal.  A nurse gently peeled off the tape and then the patches, always cognizant of how much her patient was flinching in the background.  The skin is understandably angry after all of that, so a 20-minute waiting period takes place before the sites are examined to allow the skin to cool down.  One of my top ten favorite healthcare interactions of all time resulted:

“Try not to scratch, okay?  I’ll be back soon.”  -Nurse

“Okay.” -Me

*Frantically scratches back as nurse leaves the room*

20 minutes later:

Nurse, lifting patient’s shirt: “Did you scratch…?”

“No…..I mean, yes!” -Me

Now I know how Tootsie and Ace feel: guilty as charged.

Further examination revealed some irritation to certain patches.  The nurse bid me farewell with strict instructions not to scratch at home.

On Friday, I met with the doctor.  The skin irritation had quieted down at that point, and she did not believe that I was reacting to the patches we tested.  Further testing of a wider range of patches was recommended.  TBD what that will reveal… But at least I’ll know how to wash my hair better for the next time.

We also did a penicillin test, which involved scratch testing of the skin, shots, and eventual ingestion of penicillin.  Being a healthcare nerd, I know that penicillin allergies are often misdiagnosed or that patients will outgrow the allergies, and I was hopeful that the one time I broke out in hives and ran to the bathroom every few hours while taking penicillin in college would be a fluke.  It was.  Your girl is free to take the antibiotic again, which is nice to know in case of any serious infections in the future.  Now to update my MedicAlert bracelet!  I will bask in the glory of removing a medical jewelry condition rather than adding one this time around!

I took everything in stride the week of the appointments, mostly because of the superb care I was so blessed to receive at MGH.  The appointments ran on time; I was seen by an expert in the field; the nurses were considerate and thorough; the receptionists were friendly; a volunteer greeter walked me to the elevator I needed; just wow.  From the moment I stepped foot in the main lobby at MGH, I was treated respectfully.  I was not just a patient.  I was a human being.  Just like everyone else in the building.  This is a welcome change from some of my experiences at other facilities, and I urge those clinics (you know who you are) to take a page out of MGH’s book.  There is a reason why MGH is repeatedly numero uno.

The following week, exhaustion and burnout reared their ugly heads, and I was just… done.  Done with diabetes, with healthcare, with publicly sharing my health story, with traffic, with pretty much everything.  I wanted my privacy and my identity back- to not submit myself to one more needle poke or to being a patient incessantly pingpong-ing around the healthcare system.  Alas, after lots of sleep and lots of time spent in good company, I can see the light more clearly this week.  I am extremely fortunate to live near Boston and to receive topnotch care.  It is okay to be tired.  But I have to keep going, not allowing health woes to take over; rather, to know that I am trying.  We all do this because we have to.

Goodnight.  Don’t let the scratch tests bite.

-Ally-gator

 

 

 

*My condolences to those mourning the loss of friends and family members from the diabetic online community this week.  I hope that this blog post provided some comic relief, but on a more serious note please know that you are all in my thoughts and prayers. 

#weneedacure

 

 

 

 

A+ for NuGo Bars

In May I was contacted by NuGo Nutrition in regards to sampling and reviewing their diabetes-friendly NuGo Slim bars.  I respect companies like NuGo Nutrition which value the opinions of their potential consumers enough to reach out and interact with us.  So I thought, Sure, why not? Chocolate-covered bars that are supposedly well-liked by the body?  Yum!  The only way to know for sure was to actually taste the bars and see for myself.

NuGo Nutrition sent me a box of Nugo Slim bars with various flavor samples.  Normally, grocery-store-bought nutrition bars collect dust in my kitchen cabinets.  As for the Nugo Slim bars, though, I liked each flavor and consumed all of the samples with surprising speed.  I plan on purchasing a supply the next time I am near my local Whole Foods store.  For locations nearby which sell NuGo products, you can use NuGo Nutrition’s online search feature (see here).

My #doc friend, Laddie, over at testguessandgo.com also reviewed these bars, and if you would like to read more: please see here.

NuGo Slim bars got the “Ally A+” nod of approval because they performed as they were advertised.  They were yummy, they did not spike my blood sugar, and they, in fact, kept my blood sugar stable when I needed a little boost of carbohydrates through out the day or night.

Being back on multiple daily injections has proven to be a challenge overnight, simply because once that Lantus morning dose of insulin is in you, it’s in you for the whole day and night.  Historically, whether on the insulin pump or on shots, my blood sugar tends to drop quite a bit over the course of the night.  If I was going into bedtime with a lower blood sugar value than I would normally like to see (knowing that I will generally drop more overnight), by eating half of a Nugo Slim bar before bed, I kept the line on my CGM graph stable and pretty as I slept peacefully.

During a visit to Newport, Rhode Island, with one of my siblings and some friends, we were more active than I originally anticipated.  Again, being back on multiple daily injections, this situation is a bit more complicated because I cannot simply reduce my basal, which was already injected into me for the day, like insulin pumpers can do with temporary pump basals.  I needed a snack that would keep my blood sugar at the healthy range that it was in, without spiking me too high while also preventing the impending low due to exercise.  NuGo Slim bars got the job done, and I was able to enjoy my time with my friends without diabetes interrupting our day.

The healthy ingredients, low sugar, moderate amounts of protein and fiber which helped stabilize my blood sugar, low net carbs, and real dark chocolate in NuGo Slim bars were a winning combination for me.  While I disclose that I received sample products from NuGo Nutrition, the opinion presented here is my own.  I am sharing my thoughts with the #doc because I believe that NuGo Slim bars offer a high-quality snack option for diabetics.

Favorites and Forgiving Diabetes

My favorite post is one that mostly flew under the radar:  24. P.S. I forgive you.

This post describes how I chose to forgive diabetes for the bad and to reflect on the good I have received during my 24th “diaversary.”  While it was not my most popular post of all time, it openly represents my emotions on a day that is always bittersweet.

Stephen’s short yet powerful comment on this blog post meant a lot to me, as did another I received via Facebook from the mother of a diabetic child who thanked me for writing the things that her son could not yet articulate at a young age.  Those little moments make blogging so worth it.  We can use our words to connect with and encourage others who face similar obstacles each day.  #DOC in a nutshell!

Diabetes Campfire Stories

“Back in my day, we used pork-sourced insulin when I was diagnosed!” I may one day proclaim to my future grandchildren.

At this point in time, there will be a cure for diabetes and they will laugh off my fireside tales of the struggles of the past, oblivious to the hardships that generations before them have faced. Honestly, that’s how it should be if we aim to improve the world during our brief time here.

So many changes have occurred in diabetes treatments since my diagnosis just before my third birthday in the early 1990s. And I have not endured half of what rockstars like Supreme Court Justice Sonia Sotomayor have lived through regarding diabetes management processes! Change does not have to be a comparison battle, rather it should grant a clear perspective of just how blessed we are today despite a conniving autoimmune condition.

Almost one year ago I began using the Dexcom CGM (continuous glucose monitor) in the hopes of alleviating anxiety surrounding my diabetes. From the first day, I was absolutely floored by this product. Sure, it is technology and it is not the same as a properly-functioning pancreas. I have to carefully prep my insertion sites to avoid blistering rashes. And I am still waiting on my winning lottery ticket so that I can make my first purchase: a fulltime nurse who will check my blood sugar at night and will perform Dexcom insertions on me so that I do not have to do the one-handed pretzel move to get a sensor in my lower back.

Despite these minor issues, Dexcom is, in my humble opinion, the best quality product on the diabetes market. Due to many diabetes hurdles this year, I cannot boast of an A1C that drastically improved while on Dexcom, but I can say that my mental anguish regarding diabetes has lessened substantially thanks to Dexcom’s accurate readings. That, my friends, is half the battle. I still fear overnight lows, but I am much more confident that I will wake up thanks to Dexcom rattling and alarming from an empty coffee mug on my nightstand. I owe my life to Dexcom, as do many others. In the past, we all had to make do with what we had, and plenty of us survived prior to CGMs. But Dexcom is an added safeguard that makes life less complicated. It is the sort of change that is easy to embrace.

The Dexcom Facebook group was my true introduction to the diabetic online community. For the most part, this group is wonderfully supportive and non-judgmental- a place where we can all feel at home. We are able to share our scary moments and our triumphs with an audience who “gets it.” As I ventured off into the blogosphere, I fostered genuine friendships with others in the community, but I will always have Dexcom to thank for being the springboard to finding some of my largest supporters in fighting diabetes.

In grade school my mother used to drive to the auditorium to check my blood sugar every day at lunch. These were the infamous NPH and R days, and lunchtime was primetime for lows. My mother recalls seeing me file into the cafeteria with the rest of my class looking white as a ghost; she does not know how I had enough energy to even walk on some occasions when my blood sugar hovered in the 30s and 40s. There was no Dexcom back then to alert my teacher to the rapid decline.

On the playground in fourth grade, Michelle spoke the unfiltered truth. “I’m sorry that I didn’t invite you to my sleepover for my birthday. You could come if you weren’t diabetic, but my Mom doesn’t know how to take care of your diabetes so you can’t sleep over.”

In fairness to Michelle’s Mom, after twenty-four years of diabetes, I’m still trying to crack its code. I give her credit for recognizing that this disease is much more serious than an herbal cure remedy. Perhaps she could have coached her child on her delivery of the bad news a little more, but we can’t always have it all.

When I see the parents of children using Dexcom CGM post in the Facebook group about little Joey or Susie attending the first big sleepover of the school year, it never fails to bring tears to my eyes. Those kids put up with enough pokes and prods, fingersticks and pump site rotations, Dexcom insertions and limited cake consumption that they warrant having some fun with their friends every once in a while. They deserve to stay up all night eating popcorn and watching movies, forgetting that diabetes exists while Mom and Dad rest comfortably at home watching the steady line of the Nightscout Project’s Pebble watch display or the Dexcom Share apps.

Enjoy that good type of change. Remember the freedom that this product affords us, even on the days where the calibrations seem a bit off. After all, we are dealing with type one diabetes; diabetes’ “calibrations” to everyday life are rarely on the mark. Innovative products like Dexcom CGM allow us to live life in the moment, to have an additional security blanket onboard, to do things that diabetics in the past may not have been able to do.

To the parents of the kids going to the sleepovers where Dexcom gets the invite, too: Your kids will thank you for allowing them to just be kids one day when they are old enough to realize the sacrifices that you made for them. One day we will all sit with our respective families around the campfire and talk about that first sleepover as a diabetic, the first time fast-acting insulin was introduced, and so on, until we can finally talk about the first big meal after the cure.

Keep up the good work.

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.

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Thumbs Up for the New Endo

Transitioning from one endocrinologist to another can be emotional and stressful.  We’ve been over this.

As many people expressed similar anxieties about perhaps having to switch doctors at some point in time when I first blogged about this topic, I wanted to provide a quick update on that front:

Today I met my new endocrinologist, as my former endo relocated far away.  New Endo was kind and understanding.  There were no lectures, which automatically earns her many (sugar-free) brownie points in my book.  We set realistic goals which will help improve quality of life a bit.  (Think along the lines of decreasing basal rates to avoid treating multiple lows in the early morning hours with old Christmas candy stash goodies.  And of course, I renewed my vows to put on my brave face and try to take more insulin each day.)

A lot of this stuff seems so obvious now that I’m writing it down.  But it helps to just speak it out loud to a knowledgeable endo’s ears and to have her input in making adjustments which can have big impacts on my health.

We’re going to get where we want to be in terms of my diabetes management eventually.  It has been a year of SO many big changes, but I am learning that change can be good, especially if you have the right people in your corner helping you to keep on, keepin’ on.