An Hour's Worth of Emotions

Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

I present to you the story of the events of Monday morning, with words describing our wide-ranging emotions about said events highlighted in bold print:

On Monday, my kid arrived at school anxious- not about the first day of standardized testing, but about which teacher had been chosen to proctor her private testing room. Her 504 plan has accommodations allowing her to stop and restart testing to deal with any diabetes issues, so she is separated from other kids since her test might be timed differently than that of others. "It's so awkward, mom, I hope it's a teacher I know at least." She checked the list posted in the school lobby and was confused. She had, inexplicably, been assigned to a room with a large group of special education kids. The texts to me began...

"Help! What do I do?"

"Go to guidance and explain that you've been told you were testing alone."

We texted back and forth for 25 minutes or so while she sat in the guidance office. People came in and out asking her questions and then disappearing for stretches of time. All of the teachers not assigned to a testing room were summoned to the principal's office via the PA system. She eventually stopped answering my texts at which point I assumed the situation had been resolved and that she had started taking the test somewhere- with someone.

Scrolling back through those texts, the words and emojis described the following emotions:

Surprise
Anger
Confusion
Frustration
Boredom
Impatience
Sadness
Anxiety
Loneliness
Aggravation
Annoyance
Hope
Disbelief
Stress

Those were interspersed, because how else were we going to cope, with

Amusement and
Laughter



In the end she was relieved that it got resolved, and amazed that the stress hadn't spiked her blood sugar. We were surprised that the rules required 2 teachers to be in the room with her and thankful that they were two teachers she knew and liked. They helped her settle in well and she feels confident about how she did on the day's tests.

In the end, I was proud of her for handling the situation herself and happy that technology allowed me to support her via text.

I would be embarrassed, however, if school officials discovered the number of circus-themed emojis I sent over the course of the morning.

While this story highlights in a somewhat lighthearted way how diabetes can lead to a wide range of emotions in just an hour of every day life, the possibility of long-term serious mental health issues is real. Depression, burnout, anxiety and other mental health issues impact most people with diabetes and their caregivers at one time or another. To read other perspectives on this topic, click here.

Lost in the Dark

I chose the 'wildcard' option for my Diabetes Blog Week day 3 post:

Whether you or your loved one are newly diagnosed or have been dealing with diabetes for a while, you probably realize that things can (and will) go wrong.  But sometimes the things that go wrong aren’t stressful - instead sometimes they are downright funny!  Go ahead and share your Diabetes Blooper - your “I can’t believe I did that" moment - your big “D-oh” - and let’s all have a good laugh together!!

Okay- a caveat- this one was stressful for my daughter. But because I didn't hear about it until everything was resolved, I'm able to laugh about it:

She boarded the dark roller coaster and discovered the seat was cramped. Before using the safety harness, she decided she'd be more comfortable if she removed her Dexcom receiver which was clipped to her waistband. She stashed the receiver in her string backpack and put the bag in the pouch area in front of her.

The ride was scarier than she'd hoped. She got off, grabbed her bag, and quickly headed for the exit.

Once outside, she opened her bag to grab the Dexcom. It wasn't at the top where she'd put it. She frantically removed every item from the bag. It wasn't in there. She had her friends double-check. No Dexi.

She approached the attendant at the ride entrance. "I lost my medical device on the ride."

She described the device, an electronic item in a black case with a belt clip. She answered questions about which seat she'd been in and how long ago she rode.

The attendant checked his station first since all lost and found items ultimately ended up there. He didn't have it. He called the person at the stand next to the ride, where any lost items would be turned in by riders who found them in their cars, and was told it wasn't there either.

"We may have to shut down the ride and turn on all the lights if it doesn't show up."

My daughter was horrified. Her mistake could potentially shut down one of the most popular rides at the amusement park.

"We'll wait a few more minutes and see if anyone turns it in."

At that point, it was time for the ride attendants to rotate stations or take their breaks. The guy helping my daughter left and was replaced by the person who had been at the stand next to the ride.

"Describe it to me again?" he asked.

She did.

"OH ...  Yup. I have it. I thought it was an I-Pod."

It was a scary 15 minutes.

Lessons were learned about securing valuable items.

Ultimately everybody lived happily ever after, and now we can laugh about it.

Want to read more stories about 'Diabetes Oops Moments?' Click here!

Getting Our Money's Worth

It's Day 2 of Diabetes Blog Week! Today's topic is: Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

I'm grateful that our family is able to secure what most in this country would consider 'good' health insurance through an employer and that we're able to afford what are still extraordinarily expensive premiums, deductibles and copays. There are so many people who are unable to afford care which would allow them to live...let alone live well...with diabetes. Having access to quality diabetes care is not, in this country, in this day and age, something to take for granted. Instead, both because it's not guaranteed and because we pay dearly for it is, for us, a precious resource which should be used wisely in lots of ways, including these:

We prepare well for, and take full advantage of visits to the endocrinologist. Our copay to visit a specialist is $50- no small price.  We choose our specialists carefully, and if we're not happy we don't go back, just like we wouldn't return to a restaurant that served a sub-par $50 meal. Fortunately, after some trial and error, we found a great endo years ago. In the days leading up to the appointment, we talk as a family about what problems we're hoping to get solutions to and what questions we need answered. Once we're there, we give the 20-30 minute conversation all of our energy and focus. We take notes, and when we get home we implement the suggestions.

We also choose and purchase our diabetes equipment carefully. We pay a 20-30% copay for pump and CGM supplies. So we do our homework there too, extensively researching options. Then we talk with the doctor to choose the best insulin delivery and glucose monitoring methods for my child's particular needs. Over the course of many years I have managed to stockpile some extra pump and CGM supplies in case there is a lapse in our insurance or in our ability to pay that 20-30% copay.

We find opportunities to save money on supplies when it's reasonable to do so. We recently had the choice whether to pay full price for Lantus to keep in the fridge- and hopefully never use- for pump failure, or to receive a different long-acting insulin for no copay at all. That was a no brainer. We chose last year to stick with the longer-lasting transmitters and sensors of the Dexcom G4 instead of upgrading to the G5 which would cost us more in maintenance supplies. On a much smaller scale, I stock up during juice box sales and buy out the Smarties post-Halloween.

Despite the alarming annual tally of medical costs I compile each year for the income tax file, we are among the fortunate ones. Those costs don't preclude our ability to pay for housing, groceries, or even annual family vacations. So when there are unneeded supplies in the closet, or a charitable organization to support, we try to help those who are unable to afford the costs of diabetes. We've donated test strips and meters to Insulin for Life. We participate in an annual JDRF walk. We share information on social media about local organizations willing to take and redistribute unexpired diabetes supplies. We write letters and make phone calls to government representatives, insurance companies, and medical companies.

We do what we can to use our resources wisely and to help and advocate for those who don't have adequate resources to use.

More Diabetes Blog Week posts on the cost of diabetes can be found by clicking here.

Stuff Happens

 

Today's the first day of Diabetes Blog Week! (!!!)

Today's topic is: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

 

I try to maintain a family-friendly blog here, so I'll put it this way: Diabetes stuff happens. Like sitting down to lunch only to discover there's only a unit of insulin left in the pump. Or being so low all day that you run out of glucose tabs. Or discovering the meter battery is dead while you're on a sleepover. The stuff is not always preventable. So we try to be prepared for as many eventualities as possible.

 

At home or at school there are plenty of supplies to address any diabetes disaster. When we're out but close to home I can run over to a friend's house with a battery or we can stop home between errands for a new infusion set if we need to.

 

But sometimes we travel further afield. For day trips, excursions while on vacation and school field trips, we throw this Ziploc bag (or a facsimile thereof from school) in the backpack:

 

THE CONTENTS INCLUDE:

A spare vial of test strips

Spare batteries for both the meter and the pump

Glucagon (even though there's usually one in my purse)

The current open vial of insulin

Long-acting insulin for pump failure - at least if we'll be more than an hour or so away

A couple of syringes

Everything needed for a site change including 2 insertion sets

Dexcom tape
Extra glucose tabs

 

 

If it's hot, we put the contents in this insulated zipper bag.

 

It's a lot to carry around. We usually also carry extra juice boxes and water. But it beats the possibility of having to return home (or to our home away from home) if the infusion set rips out, or the pump battery dies, or somebody accidentally dumps all the test strips on the ground.

 

Nobody ever said having diabetes was predictable. Stuff happens. That stuff is less likely to stop us if we're prepared for it.

Want to read more posts about the Unexpected? Click here!
 



Uni-solve

Tips and Tricks - Friday 5/20 Let's round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There's always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)

I love this stuff.

We order it, of course, to remove the tape and its residue from my daughter's pump sites.  I love, of course, that it helps dissolve the adhesive and makes taking off pump site tape a little less painful than ripping off a stubborn Band-Aid.  But I love it for other reasons too.

There was a day, many many years ago, when I couldn't get the price-tag gunk off of a very nice piece of glassware I was giving as a gift.  Rubbing alcohol didn't work.  Neither did mineral oil.  What could I use?  Well, there was something in the site change supply box that seemed to remove stickers from my kid's body with amazing ease. One Uni-solve wipe and you would have never know that vase had ever had a price tag on it at all.

That was the beginning of a long love affair.  In addition to countless other price tags, Uni-solve has also removed

-temporary tattoos- even the stubborn ones- instantaneously. 

-a substance called 'spirit gum,' used to attach a beard when my daughter played a rabbi on stage.

-permanent marker from our windshield after a weekly beach pass was attached before the ink dried.

-adhesive leftovers from many other friends' and family members' hospital experiences.

-pine sap from fingers, feet and flip flops

-gum residue from shoes

Uni-solve is one of the happy little discoveries diabetes brought into our lives.  It's like having a secret weapon; a tool most people don't even know exists. With all the reasons diabetes makes us feel challenged and put-upon, this stuff is our little reward.

For more diabetes tips and tricks, click here!

I'd Rather Get a Mani-Pedi

The Healthcare Experience - Thursday 5/19 Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

My daughter attended her 8th grade 'semiformal' dance last weekend.  As a treat, she and a few friends went after school the day before the dance to get  manicures and pedicures. She was there for an hour and half, had her feet and hands pampered, sat in a massage chair, ate a coffee flavored hard candy and came out feeling relaxed and good about herself.  The price was half that of the coinsurance we'll pay in a couple of weeks when we go to the endocrinologist, and that doesn't even factor in the cost of health insurance in general.

I realize that the endocrinologist has significantly more education, expertise and support staff than the women who work in the nail salon, but bear with me here. 

What if she'd arrived at the nail salon and there had been a dozen people in line ahead of her, forcing her to wait in an uncomfortable chair for an hour?  What if she sat down at the little table to have fingers done and after the seventh digit, the manicurist sent her home because she was out of time?  What if once her fingers were done she went over to the pedicure area and was told pedicures required a separate appointment time at this salon so that even though she thought she'd booked a combination package there was no way she could have one today?  What if once she'd chosen the perfect polish color to match her dress, she was told that color was not included in the price and that she'd have to purchase the entire bottle at an exorbitant fee in order to proceed? 

Are you catching my drift yet? The crux of my argument is this: if any of these scenarios happened at our local nail salon we'd go elsewhere and write a scathing Yelp review for good measure.  Yet in the healthcare marketplace we put up with so much.  Our choices are limited, and while we sometimes put up with issues at a mediocre medical practice in order to get good care from a provider we trust, we shouldn't have to.

Most of us are paying through the nose for diabetes care.  Shouldn't we get a friendly welcome? Shouldn't there be a comfortable chair (massage chair preferred but not required) during a short wait, and maybe a complimentary cup of tea or glass of water? Shouldn't we expect the visit to have a seamless flow from vitals to data download to face-to-face time with the doctor?  Shouldn't the provider look us in the eye and ask what diabetes issues we need to talk about?  Shouldn't our insurance cover the diabetes care and equipment we and our doctors believe to be most appropriate for our individual needs?  Shouldn't our face to face and phone conversations with diabetes care and supply providers leave us feeling like the customer is always right and always comes first?

It's a huge problem to which I wish I had a solution.  We've been proactive over the years in shopping around to find the best endocrinology practice we have access to based on our insurance and geography in any given era.  When it's possible, I advocate for access to what we need both on an individual level and on a larger scale.  Nevertheless, in annual copays alone, we're spending an extravagant vacation's worth of money each year for service we'd almost always rate poorly in the 'reviews' section on a given website, and which we'd often choose never to pay for again.  If we had a choice.

What do other people think about their healthcare experience?  Click here to find out!

A House Divided

Language and Diabetes - Wednesday 5/18 There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.

"Words mean more than what is set down on paper. It takes the human voice to infuse them with deeper meaning."   -Maya Angelou

We are a house divided.

My daughter calls herself a 'diabetic,' and talks about the other 'diabetics' at school.  She thinks it's ridiculous that I avoid the word at all costs. 

In my mind, using the word 'diabetic' labels a person with a disease. Hearing or using the word makes me uncomfortable. 'Person with diabetes' makes the diabetes part more peripheral to the whole person, so that's what I use (and PWD for short).

Maybe it's my social work degree talking.  Labels are limiting, I've been taught.  There's more to a person than (insert any one personal characteristic here).  Labels separate us rather than bring us together.  Using one word to describe someone eliminates all of the other important characteristics which make up a whole, unique, interesting person.

I'm also concerned about the negative connotations of the word 'diabetic' in the popular media.  Do I want my kid grouped in with a collection of people the media (wrongly yet repeatedly) portrays as fat and lazy? You and I know those are all ridiculous, inaccurate depictions, but the general population does not.  Why go there unnecessarily?

Most importantly, I know my daughter is so much more than her diabetes. I fear that the 'diabetic' label will somehow supersede all of the other characteristics which make her her.

But yet, and not just to keep the peace, I'll admit that I can see my daughter's point.  A diabetic is something she is, just like she's a musician, a scholar, a reader, a baseball fan, a cook, a friend, a cousin, an actress and a teenager. 

Maybe, as long as it's not the only label, 'diabetic' is an okay self-describing word to use. She's not using it negatively or positively.  She's not using it exclusively of other descriptors.  She's using it matter-of-factly.

She uses it because words are, in the end, tools to convey information.   'Because I'm a diabetic, I got to eat a snack on the way back from the field trip.'  'All the diabetics got called to the office for a group picture to publicize the school's JDRF walk.'  'I'm following this one diabetic's Instagram account and it has hilarious memes on it.' 

Let's revisit the Maya Angelou quote I started with, "Words mean more than what is set down on paper.  It takes the human voice to infuse them with deeper meaning." 

I'm not going to start using the word 'diabetic.'  In my mouth, it sounds negative, limiting and simplistic.  My daughter will keep using it because to her, 'diabetic' is simply one of the many interesting things a person can be.  I will not be upset when she or others in the diabetes community use it because I am sure that, for them, it is conveying the meaning they intend.  Perhaps a house divided against itself can stand after all.

For more thoughts on why words do, or do not, matter, click here!

In The Back Of My Mind

The Other Half of Diabetes - Tuesday 5/17 We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

Always, in the back of my mind, is the possibility that, due to diabetes, my child will become unconscious when I'm not with her or that she will die at night.   When I hear an ambulance headed towards her school I wonder if my phone is about to ring.  When my child is sleeping in, or when I don't hear from her early on the morning of a sleepover, I wonder if she's asleep or passed out, or if she's even alive. Despite our attempts to push it into the background of an otherwise productive and happy life, diabetes is a dangerous and sometimes deadly disease.

I feel better when she's wearing the Dexcom. With it, I know she's got a safety net when it's a strenuous gym day or when she's out with friends.  When she's sleeping in I can check the graph and wake her if necessary. But even then a lost signal or a night of inaccurate readings will leave me glancing at her bedroom door, wondering.  Will I need the glucagon? What if she doesn't wake up?

It's not an overwhelming fear, nor do I dwell on it.  It just lingers in the back of my mind. Yet it certainly sets my concerns apart from those of other parents. They complain about their sleepy, lazy teenagers, but they rest assured that by noon these kids will appear in their kitchens no worse for wear.  This isn't a conversation I have with the mom's night out crowd.  It's a huge jump from, "I wish Susie would get her butt out of bed and do something useful on Saturday mornings," to "Well at least you know she's getting up- when my kid sleeps in , I seriously consider the possibility that she's unconscious or dead.  Please pass the chardonnay."  Sharing this anxiety could, mental health professionals may contend, be helpful to me, and it would certainly be a form of advocacy and awareness-raising.  So far, beyond a couple of very close friends, I'm not there.

How, then, do I keep these thoughts from paralyzing me...how do I keep them in the back of my mind?  Fortunately I'm generally not prone to episodes of panic, so my overall temperament helps. Writing and reading here in the diabetes blogosphere reminds me that I'm not alone, which is a huge source of support. When I notice I'm beginning to dwell on this (or any other) anxiety, I know it's time to take better care of myself. I push myself to engage in incredibly simple but sometimes seemingly impossible tasks like making myself a cup of tea, taking long walks, eating well, ensuring that I'm spiritually engaged, doing something fun, and/or talking to someone I trust. I can't eliminate this particular anxiety without eliminating diabetes altogether, but I've remained able to keep it from becoming more than an occasional fleeting thought.

Living with diabetes means living with a unique collection of stressors, fears and other emotional challenges.  I'm curious to read how other people deal with the ways diabetes impacts their mental health, interpersonal relationships and sense of self.  Click here to read more posts on today's topic.

Why Am I Doing This Anyway?

Message Monday - Monday 5/16 Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

A half a mile into a windy and drizzly JDRF Walk my two year old daughter turned around in her stroller and asked, "why are we doing this anyway?" 

"To raise money to help people find ways to make having diabetes easier and to eventually make it so people don't have diabetes at all anymore," I replied.

Satisfied, she turned back around and enjoyed the overhang feature of her stroller which was keeping her dry.

Her question still rings in my head in a variety of circumstances. When engaged in any endeavor, either as an individual or as part of a group or organization, it's important to know, 'why are we doing this anyway.'  Essentially, today's diabetes blog week topic translated in my head to, 'why are you writing this blog anyway?'

The answer is similar to the one I gave my daughter about the JDRF walk.  While I can't cure diabetes with a blog, I hope I can make it easier.  Difficult situations are easier when there is someone to share the journey with.  The best people to share a difficult journey with are often those who've been there before.  Not everyone has a collection of people in their neighborhood who are also raising kids with diabetes.  Even those who spend time with others in the same boat may be looking for alternate perspectives and ideas. 

That's why I'm doing this.  The 'diabetes awareness message,' as the prompt calls it, that I'm trying to get out there is, 'you're not alone.'  See also, 'I'm not alone.'

While I sometimes write about advocacy issues and current diabetes-related events, I mostly try to share everyday stories about our everyday life with diabetes.  More specifically, I write stories about a girl between the ages of 9 and14 and her parents, with occasional flashbacks to the earlier years. These are stories about school, hanging out with friends, what we had for dinner, vacations, afterschool activities, and stuffed animals. These are stories about how diabetes factors into the every day life of a kid and her family.  I write because I hope someone out there is nodding her head and saying, 'me too.'  I write because I hope someone out there is scratching his head and saying, 'I never thought about it that way.'  I write because it makes me feel less alone on this journey too.

For other bloggers' thoughts on why they are doing this anyway, click here!

Bits and Pieces - Catching Up Before Looking Ahead

May is upon us, and the pace is picking up again.  In case you missed them, here are a few interesting bits and pieces of the big world of Diabetes which have crossed my computer screen in the past week or two:

This NPR podcast entitled, 'The Robot Vacuum Ate My Pancreas,' tells the story of Dana Lewis who invented her own artificial pancreas.  Not only is it fascinating to hear that (extremely intelligent, technologically trained) people are successfully doing this, but the piece does an excellent job of explaining her motivation.  A comparison of maintaining level blood sugars to trying to keep a car going exactly 70 miles an hour without cruise control was one clever example of how this piece describes the kinds of frustrations diabetes management brings.

The new Miss New Hampshire has Type 1 Diabetes and hopes use her platform to raise awareness throughout her state and during the Miss America Competition.  Awareness raising is always good in my book.

There was a huge stem cell therapy conference at the Vatican last week which received press in the mainstream media.  The attendees were addressed by both the Pope and Vice President Biden, along with many others. Diabetes and its community of advocates were well represented along with a multitude of other issues stem cell therapy may eventually provide help for.  The conference was designed to encourage collaboration between scientists using similar technology to treat different diseases.  You can sample the conference and its media coverage via the twitter feed.

Diabetes Blog Week is coming!  The week runs from May 16-20th with wildcard topics for those who want to keep going into the weekend.  I'm excited to respond to the prompts, and to read the thoughtful posts they're likely to evoke. 

National Nurse's Day is this Friday, May 6th.  Our school nurse will get a bottle of Bath and Body Works' Stress Relief Hand Sanitizer, and a card from us.  Don't forget the nurses who are important to you!

In my daughter's little world this month will bring big events like the annual standardized tests, at least 4 birthday celebrations, the 8th grade semi-formal dance and an all day music field trip which includes both performance competitions and time at an amusement park.  These should all prove to be incredibly exciting.  Will diabetes cooperate?  Stay tuned for details!

Everybody's Different

I'm still thinking a bit about Diabetes Blog Week and some of the themes which ran through it.  One of them, which was intentionally brought out by the 'keep it to yourself' topic but came out somewhere almost every day, had to do with things we're reluctant to share about our lives with diabetes.

We outed ourselves for things like being angry about diabetes, or being happy about something it's brought into our lives.  We were reluctant to share that we do not use every available piece of technology, or that a particular dietary choice is helping our control. We didn't want people to know that we test overnight or that we choose to eat cupcakes or cheeseburgers.  People said they were afraid to disclose who they choose to tell they have diabetes, or the language they use to do so.

I'll start by saying I'm guilty myself.  Sometimes I get past it, but sometimes I don't.  There are things I'm reluctant to share here because I care what other people think of me.

When I posted what my daughter ate on blog week's Friday I thought twice about it.  I imagined all kinds of potential judgments out there.  Some would be appalled that my kid eats what many would consider 'old people cereal' every day for breakfast.  On the opposite end of the spectrum, people would be alarmed that she was eating cake for dessert, or at least one made from a box mix.

There were days not long ago when reading through blogs, I could legitimately assume we were the only people out there not using a CGM.  And that we might be the only people whose kid wasn't attending diabetes camp or Friends For Life.  I felt a weird sense of --- if not guilt --- then at least uncomfortable different-ness.

But here's the thing: I'm almost certain I'm not the only person whose kid eats old lady cereal, enjoys birthday cake whenever possible, chooses (adamantly) not to attend diabetes camp, and took several years to decide to try a CGM which she still requests time off from now and then.

And here's the more important thing: all of that is o.k.  Really o.k.

And the most important thing?  It's also really o.k. if your kid eats fruity pebbles for breakfast, or has never had a bite of cake, or spends the whole summer at diabetes camp or chooses to use multiple daily injections or has never told anybody but the school nurse and his grandmother that he has diabetes, or wears an "I have diabetes" t-shirt to school every day.  Whatever works.  It's o.k.

As my daughter progresses through the middle school years she's becoming increasingly aware of the range of people there are out there and of the range of decisions they make. I find myself searching for words to help her understand and accept that there are all kinds of people who make all kinds of choices which may or may not be the same choices she'd make in their shoes. I find myself repeating the same sentence, which applies here as well:

Everybody's different.

And that's o.k.

Two - Many Favorites

Yesterday was the day for 'Continuing Connections' to conclude Diabetes Blog Week.  My delay is two fold:

Yesterday got away from me- it was a gorgeous Sunday packed with activities.

Secondly, and more to the point, I always have a hard time with this d-blog week topic.  I'm never able to read everything and therefore fear that my REAL favorite is still lurking somewhere on a link list waiting to be read.  I also don't want to leave anyone out who I've discovered or particularly enjoyed this week. Narrowing it down is difficult.

But narrow it down I will, to my two favorites from the Diabetes Personified category.  Both are from blogs I hadn't seen before.

From Bustin' Diabetes For Justin, Justin's own picture of diabetes was excellent.  And I love that his mom shared Justin's own words to go with it.  Diabetes is, indeed, "a poop head evil jerk."

Sweet and Sour- The Type 1 Diabetes Roller Coaster compares her diabetes to Moaning Myrtle of Harry Potter fame.   I like the thought that despite all of  Myrtle's faults, there are things we learn to like about her.

To see other bloggers' favorites, click HERE for the link list!

Today's Menu

Breakfast

              

This is one of our protein-containing, 5+ grams of fiber cereal choices which somewhat diminish the post-breakfast blood sugar spike.  

More excitingly, I bought a whole pint (well, several pints actually) of blueberries for less than one million dollars this week!!!

Lunch

Sunflower butter to protect her peanut-free friends at lunch, with great grandma's homemade spiced pear jam, which she makes special with less sugar just for my daughter.  With an occasional substitution of pretzels or sun chips, this is lunch every day.   

Snack

Snack varies every day.  Sometimes it's more substantial, like a smoothie or peanut butter crackers.  But today she's saving room for Grandpa's birthday dinner.

Dinner

I'll smash up half a sleeve of townhouse (ritz, etc. are all fine) and mix them with 3-4 tbs. of melted butter.  I might remember to squeeze in some lemon juice and add some pepper.  The fish goes in a greased (or better yet, buttered) glass baking dish.  The cracker mixture is spread on top.  Bake at 400 for 10-15 min. until it's flaky.  Yum!

We've nicknamed this rice blend 'crazy rice,' at our house.  It's got tons of flavor and a variety of textures.  Much more fun than regular brown rice.

Grandpa's Birthday Cake

I know- all kinds of problems with this.  Its's processed beyond belief.  It contains artificial everything.  The glycemic index is off the charts.

But it's Grandpa's favorite, and a family tradition.  So we'll indulge!

Food is one of my favorite topics to read, think and talk about.  So I, for one, am looking forward to reading the rest of today's Diabetes Blog Week posts which can be found HERE!

Messy

The bloody tissues are the grossest part.  

There are always used test strips in the bottom despite the designated tic-tac container in which to stash them.  

I'm not sure how long that half roll of smarties has been in there.

But this is a snapshot of the meter case in all its typical glory.

Why does it stay this way?  Why are we keeping all of this trash in here?  Because testing is among the least interesting parts of the day.  Meter, test strip, lancet, blood, tissue, number, go.  It's time to eat, or head to volleyball practice, or go back to whatever was happening before the Dexcom alarmed.

We typically don't clean it out until  the mess diminishes its functionality.  Or until there's an impending risk of dumping test strips all over the floor of a friend's house or a fancy restaurant.

Otherwise, I sort of see this mess as a good thing.  It means we have better things to do than tidy up the meter case.  It means we have better things to do than worry about diabetes for a second longer than we have to.

It's an excellent excuse anyway.

More Diabetes Blog Week posts on the 'Clean It Out' topic can be found HERE!

Anonymous

As you may have noticed, I do not share my daughter's name on this blog.  And I have never posted her photo here.  It makes for some awkwardly phrased sentences, but it's important to me to maintain a sense of anonymity.

I made this decision when I started blogging.  "Why?" my daughter often asks.

"It's for your own good," sounds like such a terribly 'mom' thing to say, but I believe it to be true.

In this age of Google and instant information, I know that once I attach her name to diabetes via this blog, I can never take it back.  I'd rather not have my blog come up as the first item when her name is searched. Today she may not care, but some day somebody's going to google her name when she applies for a job or a learning opportunity. Or when somebody sets her up on a blind date.  I'd rather newspaper articles about academic or extracurricular events pop up instead of my blog posts.  If diabetes is going to come up in that search, I'd rather it be her name as part of an advocacy or a fundraising effort she's been involved in.

I know lots of bloggers share their kids' names, and I can see the other side of the coin.  It makes the stories feel more concrete.  It allows the child to take on a bigger advocacy role within and outside of the blog.  I think that's absolutely great, and consider it another in the long list of ways different things work for different people when it comes to living with diabetes.

For me, maintaining her anonymity and allowing her to choose when and how to disclose her diabetes is what works. I do sort-of wish I'd come up with a pseudonym though.  I've spent way too much time trying to rework those awkward sentences.

This is today's contribution to Diabetes Blog Week.  To read more about things people with diabetes are keeping to themselves, click HERE.

I Can Do So Many Things All By Myself!

When my daughter was between the ages of one and four, we participated in a program called Kindermusik. It was a weekly parent-child music class where over the years she progressed from teething on maracas to dancing around the room with scarves.  One of the songs, which has now been stuck in my head for a week thanks to this prompt began, "I can do so many things all by myself!"

The song included call and response verses sung with great toddler pride: "Can you brush your hair?"  "I can brush my hair!"  Or, "Can you wash your hands?" "I can wash my hands!"

Over the years, my daughter has added a long list accomplishments to the list of things she can do:

She can wash her hands before a fingerstick all by herself.

She can read her blood sugar numbers all by herself.

She can unpack boxes of supplies all by herself.

She can check her blood sugar all by herself.

She can go to school all by herself.

She can tell if she's low all by herself.

She can treat a low all by herself.

She can read a nutrition label all by herself.

She can count her carbs all by herself.

She can go to a birthday party all by herself.

She can go out for lunch all by herself.

She can disconnect and reconnect her pump to swim all by herself.

She can have a sleepover all by herself.

She can manage her diabetes on stage all by herself.

She can go out to a buffet brunch all by herself.

She can change her site all by herself.

When she was two, I couldn't imagine leaving her to play in a different room from me.  When she was five, I couldn't imagine leaving her at a birthday party.  When she was eight, I couldn't imagine a sleepover. When she was ten, I couldn't imagine sending her to a restaurant without me.  But the independence has come, slowly and steadily.

While it's hard to imagine now, the day will come when she can go on an overnight trip all by herself.  In the blink of an eye, she'll be going off to college all by herself.

With the same instinct a toddler has to want to do as much as possible 'all by herself,'  my daughter continues to strive for independence in her diabetes care.  It's a delicate balance between keeping her safe and giving her wings. There are mis-steps and stumbling blocks along the way, but each success is cause for celebration, just like when she learned to brush her hair.

Today is the first day of Diabetes Blog Week.  Click HERE for more information about the event. Click HERE for a link to a list of participants in today's prompt of 'I can!'

Thank You!

Last one: As we wrap up another Diabetes Blog Week, let's share a few of our favorite things from the week. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or a comment left on your blog that made you smile.  Anything you liked is worth sharing! 

One highlight of D Blog Week for me was getting comments on my posts.

I love writing a post or two every week.  It's a good way to put the whole experience of caring for my daughter's diabetes in perspective for myself.  It helps me think through the particular issues we face, and to process emotions about them.  That's enough, and for just that I'd keep writing.

But I always hope someone is reading.  I hope someone is finding something to identify with, or something that will help.  Maybe my story will make someone laugh or, if needed, cry.  Maybe it will make a couple of people realize they're not alone.

I get scattered comments here and there, but the feedback this past week has been great. To all of you who commented on my, or anyone else's blog, thanks.  It's fun to know you're reading and thinking, and that you enjoyed the words you read!

While D Blog Week has been a particularly busy one for me,  I promise to return the favor slowly but surely over the next couple of weeks!

Sippy Cups

Today's Diabetes Blog Week topic:  Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes.  Want more tips?  Click here!

Despite our attempts to keep it on the QT, most of my daughter's friends know that despite being 12 years old she sometimes drinks out of a sippy cup:

The lids are long gone, replaced by fun straws.  The spill-proof aspect is no longer (usually) the important part.  We keep them around for the numbers down the side.  They allow us to measure how many ounces of juice she is drinking when she is low.

On the go and at school, it's Elmo or Clifford juice boxes all the way.  But my daughter really likes orange juice, so when she's low at home, that's her preference.  Enter the sippy cup.  We can measure varying amounts based on her blood sugar number right into the cup she'll drink it from.

It's strange to still have sippy cups around, and will be stranger still when she takes them to college with her, but measuring juice quickly and accurately is great when we're in hurry to bring that blood sugar up.

What Brings Me Down

Today's topic: May is Mental Health Month, so now seems like a great time to explore the emotional side of living with, or caring for, someone with diabetes.  What things can make dealing with diabetes an emotional issue for you and/or your loved one, and how do you cope?  More  posts on this topic can be found here!

What brings me down as a parent of a child with diabetes is when the disease impacts what my child can and cannot do.  With her cell phone, insulin pump, Dexcom and growing self-awareness, my daughter is now able to do most things other kids her age do.  But not always.

A couple of weeks ago, I wrote about having to say 'no' to an overnight birthday celebration at a friend's vacation home two hours away.  If you'd like to read the whole story, it's here.

Looking back on the post, it tells the story from start to finish.  It explains the logic of our decision and touches on the difficulty of making it.  Yet the emotions are not adequately conveyed.  I mentioned tears, but the whole thing was a real downer.

Reading the invitation?  Deflating.  Anxiety-producing.  Disappointing.  Saddening.

My daughter's reaction?  Like the stages of grief.  They were all there, though not necessarily in order:   denial, anger, bargaining, depression and acceptance.   Fortunately she moved through the whole thing in under an hour, but she was and still is deeply disappointed she can't be there.

How do we deal with it?  With this situation and others like it, we tend to combine two tactics to face the curve balls diabetes sends us.

One, I suppose, comes from our stoic New England and Pennsylvania Dutch roots. With this party invitation, as with other situations in the past, we didn't dwell on it. We had a little cry over the whole thing and unleashed a healthy tirade over diabetes' awfulness.  Then we had lunch.  What else was there to do?

The second is the fun part.  It's the 'when life gives you lemons, make lemonade' idea.  No, she can't go to the party, but we did arrange a fun sleepover at our house for the same night, and there's likely some mini-golf on tap for the weekend as well.  Is it as good as the original opportunity?  No.  But fun will be had, gosh-darnit.

Diabetes can be awful, painful, isolating and depressing.  It takes conscious effort every day to keep it from taking over our household.  Some days it takes everything we've got.

A Limerick

There once was a girl with a meter.
They said diabetes would beat her.
She rose very tall
And said with some gall,
Fall?  I won't even teeter.