Friday, September 28, 2012

Sick

Most stories posted here and titled 'sick' would describe a home littered with test strips.  They would include details about ketones and wild blood sugar fluctuations.  

This story has a different angle.  I am the one who's sick.  This is day 4 of the illness, and I've decided it's likely I'll survive it.  The doctor visit confirmed it's 'just a virus,' but it's the worst I've felt in a long time. 

I've spent three days managing the activity of my household from one corner of the sofa.  I am surrounded by tissues, drinks, phones, reading material and the remote.  Yesterday, I managed to take my daughter to ballet class after school. Upon returning home I felt as though I'd run a marathon.

Unable to muster the energy for much thought, let alone activity, it's been necessary to prioritize. Despite sore throat and cold medicine induced delirium, there were still balanced meals to be made, carbs to be counted, sites to be changed, and blood sugars to be carefully considered.  Unlike the rest of my daily activities, this part could not stop for a couple of days until I felt better.

My daughter has been an enormously good sport.  While we usually share responsibility for making breakfast and packing lunch, and for managing the diabetes aspects of snacks and meals, she's taken most if it on herself.  She'll go out to the kitchen and count out her snack, appearing at my sofa-nest to confirm her bolus before giving it. She's been helpful with meal preparation and with responsibly testing her blood sugar and adding her carbs before eating.  Yet the questionable blood sugars were mine to decide how to treat, and site change had to be done.

It doesn't stop, this diabetes stuff.  So hopefully this illness will, so I can get back to my pancreas duties and my daughter can get back to being a kid.

Monday, September 24, 2012

Diabetes Art Day

The blue circle is the symbol for World Diabetes Day.

 
 
 
The logo was created in 2007 to mark the passage of the United Nations World Diabetes Day resolution.  It symbolizes the unity of all people of the world, under one blue sky, to conquer diabetes.
 
This art was created by my daughter with cardboard, marker,crayon and test strips for:


Diabetes Art Day
http://www.diabetesartday.com/

Thursday, September 20, 2012

Early Reviews Are In

You may recall that we had a surprise when we opened our packet of information from the middle school.  We learned that although we had met and liked the nurse in June, she had moved on. We would soon become acquainted with Mrs. Not-the-one-you-met-in-June

We stopped by a few days before school started.  My daughter proudly navigated our journey to the nurse's office where we met the new nurse.  We reviewed my daughter's medical plan and her schedule.  My daughter showed  how she checked her blood sugar and programmed her pump.  I provided an index card with every bit of contact information for myself and my husband and encouraged its use for any question, no matter how small.  We left feeling comfortable.

Due to her nervous stomach as school has begun, my daughter has gotten to spend even more time than usual in the nurse's office.  Throwing up in someone's wastebasket is a quick way to develop a unique and lasting bond.  Whatever the reasons to get to know eachother, my daughter and the nurse are getting along.  Things are going smoothly, diabetes-wise.

"All my stuff is where I can reach it, so I just go right in and check and show her what I am and how much I'm giving."  The perfect balance of support and independence.

My daughter may pick up the phone and call me if she's uncertain about something.  The nurse will do the same, asking good questions. 

Most importantly, though, "she's nice."  The minutes spent there waiting for juice to kick in, or for her stomach to settle down, have been pleasant and calming. 

We're fortunate to be at a point in our diabetes journey where my daughter is fairly independent in the basic tasks of her care.  She doesn't need a CDE or other accredited diabetes expert to manage her care at school.  It's important that there is someone who can handle her diabetes if she becomes unable to do so herself due to a low blood sugar.  She needs someone available who can intelligently walk her through any unusual diabetes circumstances.

On a regular day, though, she simply needs someone she's comfortable visiting 2-4 times a day and who can tell her a good story while she waits for her blood sugar to rise.

So far, so good.

Tuesday, September 18, 2012

Fun and Functional



Re-purposing a tic-tac box for used test strips keeps (most of) them out of the bottom of the bag!




Until about a month ago, we carried our diabetes supplies in their original containers.  The  meter, lancet and strips went in the meter case, with bits of tissue and a roll of smarties.  Then there was a container of glucose tabs.  And a juice box.  And a separate bag with glucagon, a syringe, spare strips, spare batteries and more smarties.

It took us almost 10 years, but we finally realized there was a better choice.  I invested all of about $10 in this cheerful little make-up case from Target, and now it's all together.

We were inspired by a friend who re-purposed a cute pencil case for her supplies.  Why not keep these things we use so many times per day in something more fun than a black case?

We were also inspired by a greater need to keep all of these items in one place.  It is increasingly common for my daughter to go places without me and my giant purse.  She now does not need to rummage through the giant purse for the odds and ends of diabetes care, transferring them to a giant tote bag of her own.  They are now all together in this handy bag for her to grab and go.  We even chose this design over the flowery one so my husband could carry it more proudly for the walk to the library or around the park. 

A great improvement in the fun and functionality of daily diabetes drudgery.  For only $10!


This post is my September entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/september-dsma-blog-carnival-2/

Friday, September 14, 2012

Wishing For Invisibility

What middle schooler hasn't wished to be invisible?  The reasons are too numerous to count:

Acne

Bad Haircuts

Clumsiness

Mean kids

Forgotten homework

Sports blunders

Social faux-pas

Being in public with one's parents

Diabetes

Wait...that last one is invisible.  Sort-of.  Which is good.  Sometimes.

With her insulin pump in her pocket and her supplies stashed away, nobody knows my child has diabetes.  Until she disappears from the classroom every day before everyone else.  Or starts squeezing blood out of her finger at a birthday party.  Or gets all glazy eyed and starts chugging an Elmo juice box.  Then it's actually be helpful to know that she has diabetes and hasn't gone off the deep end.

She's not embarrassed about her diabetes, though she may go through a phase some day when she is.  For now, she's open to questions.  But it's not the first thing she wants people to know about her.  She'd rather talk about books or music or American Girl Dolls or the Red Sox.  She'd rather people know she's sweet and funny and smart.

Yet I suppose if the first impression was a choice between dropping all her stuff while tripping up the steps at the new school, or being seen testing her blood sugar on those same steps, she'd choose the latter.

Would you?

This week is invisible illness awareness week.  More information and the opportunity to link your own post can be found here.

Thursday, September 13, 2012

Brunch?

The fifth grade eats lunch at 10:17 a.m. 

"Most of my friends don't seem to mind," was the report.
 
My daughter minds.  A lot.  Because she's a normal person. 

Her response to the problem is our challenge.

The first day, she ate most of her lunch.  The second day she ended up in the nurse's office chugging a juice box since she'd bolused the carbs and then decided she couldn't finish. 

Over the weekend, the lunch issue became an all-consuming, awful problem in the way problems do best when you're in middle school.  All of the anxiety about every aspect of this new school experience was funneled into the lunch predicament and there was no possible solution.

By day three, she had herself so worked up about it that she was sick to her stomach.

Thankfully she's pumping, so we have some flexibility in eating patterns.  But from a regular-people perspective, she has to eat something between 7:40 a.m. and 2:52 p.m., and keep it down.

While she's got flexibility, she's used to eating regular meals on a regular schedule.  It's likely that while the pump allows for different mealtimes, a regular eating pattern makes it easier to keep her blood sugar more stable. Perhaps most significantly, it's her preference (which isn't really odd at all) to eat lunch at noon-ish and small snacks between meals.

Yes, she has her 504 plan which would allow her to eat anytime.  But she can't eat while practicing  the keyboard during music class.  Or while trying to do weather experiments in science.  And, along with every other middle school child, she doesn't want to be 'different' any more than she has to be.  So we seek a way to make this schedule work. 

Our next experiment is two snacks.  One at 10:17, and one at 2, when all 5th graders are allowed to snack if they need to.  A generous policy to make up for the ridiculous lunchtime.  She can then have another substantial 'snack' when she returns home.

Today the anxiety seemed to be dissipating a bit.  Yesterday she ate her two snacks and spent the whole lunch period with friends instead of the nurse.

Perhaps an omlette station in the cafeteria would help.

Tuesday, September 11, 2012

The 504 vs. The Details

My daughter's 504 plan works in conjunction with her medical plan sent to the school by the endocrinologist. It lays out 'accommodations' which protect her from being discriminated against because of her health, and it provides her with accommodations for situations in which her healthcare needs get in the way of her academic ones. The 504 and medical plan work together to provide information and guidelines for staff, and medical orders for the nurse to follow in assisting with her care. 

The 504 plan addresses big picture items like being allowed extra time on tests in the event of low or high blood sugar and being allowed access to water and the bathroom at any time.

At the start of the school year, though, it's the little logistical issues which require attention.  The existence of the 504 plan allows us to address these without argument, but they would seem ridiculous as bullet points on the acutal document.

  • Student may leave math textbook and snack in nurse's office to eliminate need to return to locker between gym and math.
  • Student may store chocolate covered pretzels in nurse's office in case of unexpected birthday celebration.
  • Student may check out books first during library time to allow sufficient time to check blood sugar before lunch.

We were fortunate at the elementary school to feel we really didn't need a 504 plan. It was a small school with wonderful staff who valued the individuality of each child. They would not let my daughter's diabetes come between her and a full school experience. We chose to implement the 504 in first grade not because of any concerns, but because of how well things were going. We wanted to put what was happening in writing so it would follow her through her whole school career.

It's our hope that we will feel the same at the middle school.  But it's comforting to know that, should an argument arise, there's a document to back up my daughter's right to available chocolate-covered pretzels.

Friday, September 7, 2012

Travel Trouble

A couple of weeks ago, we took our final trip of the summer.  It began with a familiar journey of four and a half hours to grandma and grandpa's house.  We would spend a night there and then travel another hour and a half with them to a cabin on a pond in the woods.  We make this trip once or twice each summer, and I mistakenly believed I could easily pack what we needed without the extra concentration required for, say, our trip to Florida earlier in the year. 

The bad omen came three quarters of the way there, when there was a thunk and a subsequent dragging sound.  Sadly it was not from a nearby vehicle, but from our own.  The muffler had come loose and was dragging down the highway.  My husband heroically secured the muffler to the car with a bungee cord and we traveled slowly but steadily to our destination.

We enjoyed a pleasant supper and researched the hours of nearby muffler places for what we hoped would be a quick fix before continuing on our way in the morning.  The only other piece of business for the evening was a site change.  Which would require insulin.  Which I realized, with a sinking feeling, was at home, four and a half hours away. 

Hoping against hope, I peered into my in-laws' fridge. Because we visit often, we leave vials of lantus and novalog there for just such a circumstance.  Sadly, my memory was correct that the last time we visited, we discovered the insulin to be near its expiration date and brought it home to use and to replace upon our next visit. 

It was 7:45 p.m. If we wanted to enjoy the rest of our vacation, we needed a source of insulin by the time the muffler was fixed in the morning. Our other options were heading home, or visiting the local hospital by evening. 

As much as I'm a supporter of small local businesses, this night is why we use a national pharmacy chain.  The pharmacist found my daughter's name quickly in the computer system and submitted the request for a refill.  Their pharmacy would be open until 10. 

Then, "Did you just refill this prescription last week?"

"Yes, but I'm visiting family here and am 250 miles from home.  I left the insulin at home."

"I'm sorry, but it's not going through on your insurance."

"Ok...well...how much would it be out of pocket?"

"Let me see...Oh WOW...it's a lot.  It's $169."

"Hmm...that is a lot." 

Funny how fast your mind can work in these moments.  I was considering the obviously higher value of my daughter's life, but also the comparative cost of traveling back home to get the insulin and the immeasurable cost of losing out on a vacation when the pharmacist offered, "Let me call your insurance for you.  I see they're still open.  Sometimes they will override the cost in an emergency.  I'll call you back within the hour to let you know."

Twenty long minutes later, the phone rang.  Our insurance would pay for it, and it would be waiting for me to pick up in a few minutes.

Site change waited until morning, but was easily done while my husband went to the muffler shop.  We very carefully packed the rest of the insulin vial into our significantly quieter car and hit the road.  The subsequent discovery of the forgotten water toys, and the need to re-wear the same shorts a few times were issues which seemed trivial compared to the trip's beginning.

Too many people pay $169 every time they need a vial of insulin.  Lots of  people end up at the hospital because they cannot afford that $169.  Countless people have advocated for insurance companies to cover the cost of insulin, even for people dense enough to leave it at home on vacation. 

While it was a stressful start to a vacation, the experience made me grateful for what our family has, and for those who make sure we have it.  It was a reminder that there's more to do out there to ensure everyone has access to basic diabetes care.