Check Your Tone
June 21, 2013
Let me preface this entire email with two
facts:
1. I’m very grouchy when I’m tired. My sleep was patchy at best on Thursday
night.
2. I’m
sort of touchy and OCD about my boys’ A1C levels. Sort of.
With that being said, I now fire off!
Part of managing and following Type One Diabetes is annual
Ophthalmology appointments for the boys to evaluate for and manage any diabetes-related
eye complications. I took the twins
today (Friday). It was Aiden’s second
visit, and Asa’s first visit since he was diagnosed after last summer’s
appointment.
These appointments are LONG. Check in. Fill out update papers. Wait.
See Optical Tech. Get eye drops. Wait for 30 minutes while dilating drops take
effect. See Other Optical Tech Guy. Wait.
See Dr. Ophthalmologist…..Times Two.
Because of my other son’s eye problem, I’ve done this at least yearly
for the last TEN years. There’s no
getting around it. Now, I get to do it
times three.
I’ve NEVER had a problem in the Ophthalmology office before. Never, and we’ve been coming, as I mentioned,
for 10 years now. I can’t remember what Mr. Other Optical Tech Guy’s title
actually is, but he does measurements, assessments, etc., before the actual physician
arrives in the room. The guy today (Mr.
OOTG), we’ve never seen before.
Well, he rubbed me all sorts of wrong.
He saw Asa first, who has never had an Ophthalmology exam
(although he’s familiar with the process from being forced to tag along all
these years), and he has only been T1D for 10 months.
Mr. OOTG: “What was his last A1C?”
Tired Grouchy Mommy: “Asa’s last A1C was 7.3.” (Just for the record, that was DOWN from the
last visit)
Mr. OOTG: “Is your Endocrinologist happy with that?” (His name is now Mr. Judgmental Tone)
Now, the question itself is harmless enough. That wasn’t the problem. The problem was the TONE in which I felt it
was asked…in front of my child. I let
this one breeze by.
Next he evaluated Aiden.
Aiden has been T1D for 16 months now….16 months today…thanks for forcing
me to think of that!
Mr. Judgmental Tone: “What was his last A1C?”
Tired Grouch Mommy
(who doesn’t like his tone): “Aiden’s
last A1C was 8.0”
No comment from Mr. Problem Tone, but clearly, Aiden saw the
elephant in the room.
Aiden: “Is that good, Mommy?”
Tired Grouchy Mommy:
“It could be better”
Mr. Judgmental Tone: “Yeah, you could say that. It could be better.”
He finishes and leaves.
We see the Ophthalmologist who reassures us all is well with the boys’
eyes, and after 1:45 minutes, we are set to leave (after paying yet another steep diabetes-related bill).
As I ponder and brew over the course of the day, Mr. OOTG’s
tone and remarks bothered me more and more.
My husband, knowing me better than anyone, reassured me that I wasn’t
being an ass. Mr. Judgmental Tone's tone and remarks were
inappropriate.
So, here’s what I’d like to say to him, and I just may when
I have to return to the same office on Tuesday for my non-T1D son. (Oh, sweet justice!) I’m sure EVERY T1D parent can echo my
sentiments.
Mr. Judgmental Tone
Guy,
I am a Registered
Nurse, and I am a Mommy (first and foremost).
I was thrown into dealing with this craptastic disease against my will….twice. I KNOW what my boys’ A1C levels are. In fact, I obsess about them. Despite being
encouraged and instructed to NOT view it as such, I view the A1C as MY report
card…and I dislike making anything but A’s! I KNOW what my Endocrinologist would like them
to be. I’d like them to be even better
than that. I am an intelligent and educated professional, but unfortunately, I
was NOT born to be a pancreas. It’s a
tough job, there are many factors that impact it, and there’s a steep learning
curve.
I am doing ALL that I
can to combat and manage this invisible beast.
I stay up late at night, well past my bedtime, defying my fatigue
level. I get up in the middle of the
night to check on the boys again in case they need carbohydrates for hypoglycemia
or additional insulin for hyperglycemia. I do frequent bolus and basal testing
to make sure the insulin ratios are as good as I can get them. I increase
insulin one week, just to have to reduce it back down (or raise it
additionally) the very next week.
Mr. Crappy Tone, I am
dealing with active 8-yr-old boys who are growing by leaps and bounds. Aiden,
in particular, has exited the “Honeymoon Phase” of this disease earlier than
expected. He has grown several inches
and gained almost 20 pounds in the last 16 months. Both of these factors complicate managing his
glucose levels and insulin ratios. After
only 10 months, Asa, too is rapidly exiting the Honeymoon Phase of this disease
as both boys have ALL THREE antibodies attacking their tiny pancreases at once!
He is growing like a weed, and he has gained 16 pounds in 10 months. It’s not easy at all.
I read anything and
everything I can get my hands on regarding this disease. I’m staying up-to-date on research. I’m doing what I can to aid in fundraising to
help find better treatments and a cure.
I’m working very hard at being TWO pancreases, which is a job for which
I’m ill-equipped. I take my boys to the Endocrinologist quarterly, who is
pleased with how my husband and I are managing our boys’ care. I take them to
the Pediatrician yearly (and as needed).
And, I take them to you yearly, too. In the meantime, I’m still trying to be a
mother to two adult daughters. In the
meantime, I’m still trying to manage THREE other boys who have their own sets
of issues. In the meantime, I’m still
trying to be a stellar wife, the arm candy, the envy of my husband’s
friends. In the meantime, I still have
to work. Most importantly, in the
meantime, I’m trying to make sure my twins still have a CHILDHOOD despite
dealing with very adult issues!
So, trust me when I
say I’m doing my best. Believe me when I
say I’m investing ALL I CAN into this disease and managing my boys because I love
them with every ounce of my being, and if ANYTHING happened to my “babies”, I
would NOT be ok….ever…again.
With that being said,
until you walk a mile, a minute, a day in my shoes, keep your tone to
yourself. You DON’T KNOW what dealing
with this disease is like until you have to deal with it every minute of every
hour of every day. There is no
remission. There is no vacation. I’m aiming every day for ideal A1Cs. I think about it EVERY DAY. I want that A on
my report card. Just like a fat person
doesn’t need you to point out that they’re fat, I don’t need you highlighting
that my boys’ A1Cs are more than we’d all like them to be! You worry about the
eyes, the Endocrinologist and I will worry about the A1Cs! If you give me
nothing else, keep your tone under wraps and give me bonus points for at least
being able to pronounce and spell “Ophthalmology”.
Sincerely,
Rhonda
Not born a
pancreas, but I play one in real life.
