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

 

 

 

 

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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