The Best Dressed Mom

If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written?  Is it diabetes related or just life related?  If you are a new blogger and don't have a favorite yet, tell us what motivated you to start sharing your story by writing a blog?  (Thank you Laddie of Test Guess and Go for suggesting this topic.)

My kids could instantly answer this question as it has become a family inside joke:  "What's that smell?"  The joke is at my expense, but lovingly.  More concerned about facilitating the activities of my children, running our mini-farm, and never a fashionista, often pressed for time, I have found myself in some embarrassing situations. 

Nothing says love like being on time to pick up your teenage daughter from an evening art class, but finding that in your haste to do chores, you have chicken sh*t all over your jacket.  Few things make your children more proud than horse poo on your shoes while touring a potential university.

How does this relate to Blogging Diabetes Week?  As parents of a child with diabetes, it is nearly universal that our first reaction is how could I have prevented this from happening and what did I do wrong?  We are assured that we did nothing wrong, that there is nothing to prevent it, and yet, we hear mixed messages as they continue to search for a cure.  It could have been triggered by a virus, our food sources and composition has changed, we are too anti-bacterial and anti-microbial in our search for cleanliness.  Our kids don't get dirty enough and play in dirt.  

At about age 5, William liked growing carrots

Dirt?  We had plenty of that.  Micro-organisms?  Check out our creek.  We've had chickens, dogs, cats, horses, rescued birds and small mammals, fish (not to mention fishing), hamsters, to name but a few.  We have gardened and even eaten a few bugs.  I think they need to keep searching.  

Foods on Friday

Today's assignment: Write a post documenting what you eat in a day!  Feel free to add links to recommended recipes/shops/whatever.  Make it an ideal day or a come-as-you-are day – no judgments either way.  

(Nothing written on this blog is intended to give medical advice or suggestions but is only our own personal account.  If you have medical questions, please consult your doctor.)

You really want to know?  This is not going to be an ideal day, I warn you in advance.  I try to fill my home with fresh made food, with food as close to nature as possible and as unprocessed as possible. One of William's favorite dishes is a cauliflower casserole.  Perhaps you should see a less perfect side of us. Today, I'm going to talk about two foods we don't eat often, but just coincided with today. (Really!)

One of the first things you hear on diagnosis is that the patient can eat anything anyone else can eat if they just bolus for it, which is both true and utterly simplistic.  This ignores that some foods will have you questioning your child in StuffMart, "Are you high again?" risking a report to CPS.  All carbohydrates are not created equal.  One of those foods that can be challenging is breakfast cereal.  

William would like to eat breakfast cereal often but it results in a very sudden, very steep rise in blood glucose.  This morning, he had slightly over a serving of Chocolate Cheerios with 1 cup of 2% milk.  He will only eat cereal if his BG is on the lower side.  It was 87 this morning.  He pre-bolused at 9:24 a.m., waited about 10 minutes and started eating.  I headed to the barn to feed our horses. Normally, as soon as I see the rise start, we add a temporary basal insulin rate of 50% for 1/2 hour to an hour, but I missed it.  I texted him and he put it on at this point, about forty minutes after eating.

BG 142 and double arrows up (quickly rising)

The temporary basal helps him with keeping the peak lower and he topped out at 180.  By three hours later and lunch time, he was down to 125, not too bad.  This seems to work for us.

For lunch, he made himself two "hockey pucks" (chicken patties) with spaghetti sauce and melted cheese on top, no buns.  For a side, he roasted broccoli with melted cheese. 

He is going to practice golf today and go to Tae Kwon Do practice, exercise affording the ability to hand a little more of a carb load for dinner.  Tonight will be pizza and a movie, a much anticipated treat for all parties.  Pizza has a bad reputation in the diabetes world.  Loaded with carbs and fat, it can be difficult to manage.  

For us, we've found that the two most popular delivery pizzas do not mix well with diabetes.  Sugar in the large crusts and high fat content make BGs hard to manage even by using the pump to extend the bolus, or deliver the insulin over a long period of time. Papa Murphy's pizza, however, doesn't seem to have the same effect.  We get loads of vegetables (and yes, pepperoni) on it, and pre-bolus. The insulin is set up to deliver 60% right away and 40% over the following two hours.  Though it may also require another correction to keep him out of the dreaded 200s (which is like getting caught in the doldrums), he can eat, at least at home, what seems to have become the national food of teenagers. 

Changes

Today let's talk about changes, in one of two ways.  Either tell us what you'd most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people's perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?

In a word:  sleep.  Scott Benner of Arden's Day says that his post about how tired he sometimes looks has gotten the most hits.  Why do you think that is?  If you read around the DOC (Diabetes Online Community), sleep is a constant refrain among parents of children with T1D.  (I'm not going to post my no-sleep D-Parent photo, even for increased traffic.)

Sleepless nights.  Zombie days.  Sometimes, it feels like my brains are liquefying.  He goes low some nights because of exercise, because he's not growing today, because no reason.  And, I can't. go. back. to. sleep.  If I do, I might actually sleep and he might go low again.  I might miss it. So why, I was once reasonably asked, not give him carbs before bed, run him higher so that I can sleep?  Well, here's a secret:  once in a very great while, I will.  Not really high, mind you, but just a little higher. Sleep is so sweet. 

This is not something that I can, out of love, do long term.  I can't risk future complications by letting his blood glucose always be high at night. He won't feel good in the morning, and the day will follow suit.  On good nights, I can fine tune the basal rate and his BG is normal, as good as mine would be with a normal pancreas.  I take advantage of those nights to give him the best average BG and best possible chance for a long, normal lifespan.  I get more sleep, glancing at my Nightscout and going back to sleep.  The basal rates will be like the perfect idle setting on an engine.  And then, it isn't.  

One night, I got the brilliant idea that while waiting (treat, wait 15 minutes) I'd practice some yoga.  I made up that first pose, butt in the air, head on the ground.  Slept well in that pose on his rug.  A 3 a.m. check of Facebook shows I'm not alone, and I've messaged friends "You up?".  Like the Apostles, I fell asleep trying to pray. So cold sometimes, I'll just sneak back under the covers for just a moment....Nope.  Get up, trip over the dog.

The change I want seems impossible.  I want parents to sleep and not have to get up to tickle the bottom of their child's foot to see, to not put a hand to their abdomen.  I want them not to feel guilt because they missed the alarm and it got serious.  I want them to have the energy to get through their next day.  I want people who can't sleep one night to realize you are telling someone who will not sleep through the night until their child is an adult, and maybe not even then.  I want to sleep.

Addendum:  My first thought this morning was "oh, that was an incredibly selfish way to answer that question". Sleep is elusive and craved but the reason for the lack of it should be clear:  unchecked lows can result in emergencies and death.  Adolescents and teens often don't wake to a fire alarm, much less a low that makes you drowsy and unresponsive.  So, more to the point, I guess I would like a way to ensure that my son is safe at night.  The CGM helps but isn't fool-proof.  Neither am I.  But, it's the best we've got right now.

Clean It Out

Today’s topic is Clean it Out.  Yesterday we kept stuff in, so today let's clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you're mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?  (Thank you Rick of RA Diabetes for this topic suggestion.)

One impact of the Great Depression was the mindset that one must never throw out something that one might use one day.  I know that lately I've aged at an accelerated rate, so before you get ahead of yourself, no, I'm not that old.  My husband and I, however, were raised and influenced by people who did experience the Depression.  It is hard for me to throw things out.  If I want to be rid of them, I must find someone to whom I can pass "treasures".

These canisters, reminiscent of film canisters (and yes, I am that old), hold 50 strips for testing blood glucose.  Using one every four to six days, I saved a basket of them.  They perfectly hold quarters in my car.  They could be used for craft projects!  Someday, someone might have a use for them!  One day, I realized I would need a bigger basket. Or..gasp...throw them out.  Recycling them mildly reduced the guilt.  I'm sure tomorrow someone is going to need them.

Keep it to Yourself

Today's Prompt:  Keep it to Yourself.  Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself? Simply let us know what kinds of stories we will never hear you tell, and why you won't tell them.)

"What you don't know can't hurt you".  Hopefully, you will never know.  Type 1 Diabetes is relatively rare.  Yet, I knew two people that have it before his diagnosis.  But I didn't know them, not really.  Until you live with this, you don't know.  And likely, I'll not be the one making sure you feel the full force of knowing.  

It's not that, moving forward, I will write only of the good things, of our successes.  Some of what we experience might help others, might raise awareness, might save one child.  If I thought that going Full Monty would be of benefit, I would.  But the truth is, most people don't want to know, not really. They want to be assured he is okay and we are handling it.  And we are.  But that's not the whole story.

I Can....

This week is Diabetes Blog Week.  Participants sign up to blog each day of this week and write in respond to a provided prompt.  My blog, started back in the dark ages, is not a diabetes blog. I thought about starting another blog that was just about diabetes, but Lifetime Learning seems to fit. Few challenges in life require more learning for a lifetime than a diabetes diagnosis. And though diabetes inhabits our thoughts every hour of every day, we still learn and laugh and make all kinds of messes in the rest of our lives.   But this week, I will try to keep up with the writing prompts and write about diabetes.  If you are just here to find out what fool thing I've done lately and really don't want to read about diabetes, come back next week.  I won't mind.

Today:  "I can..."

The arrow turned quickly.  From everything was hunky-dory to a straight down arrow meaning that it was headed to the toilet.  That's how fast our life turns on a pin and in seconds.  The arrow has become part of our lives.  They jump out at me now.  That arrow means to exit the highway, but my mind see blood glucose rising.  This arrow means "one way"; I read that all is steady and good.  It's kind of like when you are pregnant: everyone is pregnant.  When your life is governed by a continuous glucose monitor, you see arrows everywhere.

I still fight to stop the ice water dumping into my veins when I see that down arrow, or worse yet and thankfully rare right now, a double down.  It has been over a year since I can see a continuous readout of how we are doing, and I am learning.  I am learning to calm down.  (I need the t-shirt: Calm Down and Eat Carbs.)  I am learning that though I am at any moment subject to an emergency, that I can handle it and better yet, so can he.  "I'm fine, Mom," he'll say.  I pace.

Reading online about the experiences of others and with my experiences, I've figured out that William and I have this.  It's still scary sometimes, some shake-your-head moments, and I'm still dead tired but I can do this.  I can.

Flying High with Diabetes

Airport security can be a tense situation for any unseasoned traveler.  Negotiating it with an anxious adolescent who is wearing unusual devices glued to his arms heightens the experience.  In Cincinnati, it was painless.  Wearing an Omnipod pump on one arm and the Dexcom G4 Continuous Glucose Monitor (CGM) on the other, both were visible and accessible to the TSA employees.  I held out the Dexcom receiver, declared it a medical device that could not withstand xrays, and we breezed through.  

Once through, one employee approached us and began asking more questions. We tensed at first."Do you like it?" she asked my son.  "Does it help?" Her roommate has diabetes, and being Type 2, has had difficulty in obtaining the technology.  "Cool," she said, smiling.

On the return trip, his blood glucose could tell the story.  On entering Denver's airport, he read a 119 flat but the long lines and palpable stress soon had him in the 140s going up.  Again, I explained his diagnosis and that the receiver should be hand checked.  The older TSA guy gestured to a uniform up ahead.  Turning to another employee, he said within my hearing, "What?? Am I a doctor?" Real comedian, that one.  ("Excuse me," I said inside my head, "I mistook you for someone with compassion.")  I moved forward.  

The receiver was carried through with frowns, but without question.  After the body scan, the TSA agent explained that he was going to pat down the pod that was now on my son's leg and under his jeans.  I nodded assent, thankful they were only doing that.  (I had just heard of two Denver TSA agents fired for inappropriate gropes on male travelers.) William's hands were swabbed for explosives, but this TSA agent was more friendly and told my son to relax, all was well.  

We had packed Nightscout for the trip but since he was by my side, did not hook it up.  The unusual connection of a device to a cell phone with cables can look a bit MacGyver-ish to those not familiar with it.  The ride out and back encountered some turbulence, but like security, was nothing we couldn't handle.

Ha, Ha, Ha, Very Funny

Just about every evening, right after dinner, William is very energetic and begs his dad to go "shoot some hoops" out in the driveway.  As young adolescents often do, the seemingly low intensity activity can morph into more competitive "someday, I'll be able to kick your butt" play.  He can't yet, but we all know it's coming.  Each day he looks like a different boy, he is growing so much.

It's not the best choice, I tell them.  Right after dinner, William has a boatload of insulin on board. Exercise right away will increase insulin sensitivity.  His blood sugar was near normal.  I advise him, but I get an oft used refrain, "Trust me, mom".  I'm again told they are just going to stand and shoot baskets.

Halfway into my cup of coffee, he comes back inside, checks, BG 64.  The continuous glucose monitor (CGM) says he is headed straight down.  I swallow "I told you so" with my next sip of coffee.  He downs a half a cup of juice with relish and heads into his computer, surprising me with voluntarily finishing up some homework.

After finishing my coffee, I go to the office to get a book, and freeze.  Ice picks of adrenaline stab me in the chest!  William seems slumped in his chair, head to the side, no movement.  Did he pass out?  WILLIAM, I say loudly.  He looks up.  All is well, but my heart pounds and I'm about to pass out myself.

With two computer monitors, he was looking at an image of text rotated 90 degrees on the right hand monitor, so he had tilted his head and was trying to read it.  That's when I walked in.  He laughed and laughed when I told him that he'd just about given me a heart attack.  "You need to put that one on Facebook."  Laughs some more.  Ha, ha, very funny. I wonder if they sell my hair dye in multi-packs?

The Devil Made Me Do It

I left my son at home to represent my daughter at a meeting about an art competition.  She was out of town.  I normally won't even look at donuts while in the presence of my son.  It's not that, as a Type 1 Diabetic, he can't eat them.  He can - with a good amount of insulin for dessert.  It's just not the best choice for him.  He's into quantity more than quality these days.  But there it was in front of me - free donuts and hot coffee. And - no one was watching.

My mother saw this photo on Facebook and asked, "Is that a donut?" and I cheekily responded that it was a low carb protein bar.  One day, with my genetics, I'll have to just do coffee. But for now, I will occasionally "cheat".  Overall, I eat lower carb meals.  But boy, was that donut good! It will have to last me for a long while.

I congratulated myself that I had only one.  The lady beside me of similar age had a donut and what looked like some kind of long flattened donut covered in sugar.  I sat smugly. See, I made a wise choice (cough).

It was interesting being in the downtown office building, me in my jeans, walking past women in their power suits, coffee in one hand, leather-bound notepads in the crook of their arms.  I could have been like them, I told myself.  It's funny how after twenty four years as a stay-at-home mom, that occasionally have a twinge to my self-esteem. I could feel the power attitude in the hall.  They were important.  Then I shook my head.  So am I.  I am a pancreas today.  And I headed home to my job.

Quotes

Sometimes I hear someone say something I want to save, and so I will on this post which I will update periodically.

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William told me in the car that he had a "cow's foot".  What did he mean?  Well, his foot hurt after two hours of basketball and gym time.  Likely, from shoes slightly too big for him but way cool shoes.  But, a cow's foot?  Turns out, he meant that he had cramps in his toes, like a Charley horse.  (And who is Charley?)
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From "All Joy and No Fun: The Paradox of Modern Parenthood" by Jennifer Senior:
"The researchers found that the more time fathers spent in leisure activities while they were at home, the greater their drop in cortisol [stress hormone] at the end of the day, which came as no surprise; what did come as a surprise was that this effect wasn't nearly as pronounced in mothers. So what, you might ask, _did_have a pronounced effect in mothers? Simple: Seeing their husbands do work around the house."

This confirms my long held belief that there is nothing sexier than a man doing dishes.
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Dr. Who Saved His Life

It aggravated us to no end, but Dr. Who saved his life or at least his quality of life.  His refusal to use his own private bathroom was somehow linked to a Dr. Who episode he had watched. Not a fan myself, I'm unsure why the ventilation duct in the ceiling had become a horror, but he insisted on using our bathroom off of the master bedroom.  Either an alien creature or a portal to a distant world resided in his.

Not knowing anything was amiss, we groggily issued commands from the bed, "Use your own bathroom!" But then we began to notice that he was using our bathroom in the middle of the night, and with increasing frequency.  My husband asked me if I'd noticed.  The thought hadn't really coalesced until dh said something.  Likely UTI, I thought.  I promised to schedule an appointment with the pediatrician soon, but I was off to celebrate my birthday that day with my dad an hour away.

Away from daily routines, I noticed that day the trips to the bathroom, the number of drink refills, the repeated "I'm still thirsty".  And, I knew.  I knew and pushed in way down inside me.  Since, in reading many stories of diagnosis, most parents remember in blinding detail and emotion, the date, the hour, what they did that day, many were on vacation or away from home.  Perhaps just being away from routine focused us on what was happening. Sometimes, parents and doctors dismiss symptoms which mimic the flu, strep throat, or other illnesses.  A missed diagnosis can be catastrophic, deadly.  The truth lurks, like the fear in the bathroom ceiling, but closing the door and refusing to go in the room won't make it go away.  

T

This photo will always entitled "Before".  Before needles, before insulin, before counting every bite he eats, before worrying while he runs around like a normal kid, before watching him sleep and looking for the rise and fall of his chest, before wondering if I just made a mistake that will kill him.  We had stopped the day "before" at a state park, Big Bone Lick, and there he visited the bathroom and declared again his thirst.  Yet, that day, that day we were blissfully ignorant of what was to come.

We were lucky.  Because of Dr. Who, we caught it fairly early.  Not everyone is so lucky.  Please, if your child is sick, as a precaution, just take their blood glucose level or ask a doctor to.  The meters and strips can be purchased at any retail store.  And yes, it is overkill.  And worth it.   

Here are the other symptoms besides a confirmed high BG level:

• Extreme thirst
• Frequent urination
• Drowsiness and lethargy
• Sugar in urine
• Sudden vision changes
• Increased appetite
• Fruity, sweet, or wine-like odor on breath
• Heavy, labored breathing
• Stupor or unconsciousness

We are all afraid to confront the monster in the ceiling but it is only in knowing that it can be tamed. We are not so afraid anymore, but life has changed.  As I heard Scott Benner say, "It won't get any easier; you'll just get better at handling it."  Someday, maybe someday, it can be cured. (And yes, now he has conquered some of his fears and uses his own bathroom.)

"After"

shown with another Dr. Who fan

What is the cure for this?

"So, why aren't toe nails on the bottom of our feet to protect them?" my son asks in the car, the vehicle of all serious and not so serious conversations.  He must think my name is Siri and frankly, I don't know what I did without the woman in years past.  I hand him the iPhone and tell him to Google "why do humans have toe nails?" because he didn't accept my answer that they were to protect our toes.  His search reveals that toe nails might be a leftover evolutionary feature that, like the appendix, has lost usefulness.  Obviously, Siri doesn't paint hers, for my next answer was that they are decorative.

Aside from being expected to name all the constellations and know the names of all birds at the bird feeder, I try to picture my mom when I was a child, playing basketball with me.  [pause]  Nope, doesn't come to me.  My mom did not play basketball.  My son, grant you he is the only one left at home, thinks this old woman, his mother, should play basketball with him.  We live in a fairly rural area, no kids outside, and I'm evidently his playmate.  If I don't, well, there is always the computer and he knows that seeing him in front of it makes me simultaneously angry and guilty.

These roles I'm expected to play these days, it is interesting because I come from a different universe.  For example, when you were being raised, if asked to describe herself or what she "did", what did your mom say?  Mine would have said "housewife".  She was an excellent mom, don't misunderstand, but roles were a bit different.  A housewife ran the house, and children didn't have the same roles that I see today.  A woman or man staying home today to raise children are called stay-at-home moms or dads, not housewives or househusbands.  I'd never thought of it before until I heard a podcast on Fresh Air with the author of All Joy and No Fun, Jennifer Senior.  She writes about the interesting things that are happening in our culture as it relates to "the paradox of modern parenthood".

Our children, they are the focus these days.  It has become even more vivid for me now that I became William's pancreas and at-home endocrinologist after his Type 1 Diabetes diagnosis in 2013.   I read a lot, searching Siri and books for answers.  Unfortunately for those with Type 1, Siri doesn't have an answer.

Reading Between the Lines

On Humans of New York, this jumped out at me:

"And Everest is a perfect example why. The weather can change at any moment, and even though you did everything right, and trained the correct amount, you can still fall short. And if you’re thinking of nothing but the final goal—all those years, all that effort, and all the personal growth that you achieved, becomes worthless if you don’t reach the top.”

This is Type 1 Diabetes in a nutshell.  Everyone wants the perfect blood glucose numbers, the sparkling A1C, an athletic body to show off.  We hack medical devices because #wearenotwaiting, parents waken to test their children in the middle of the night, we fight insurance companies, count carbs, inject our children over and over and over.  And sometimes, it comes down sometimes to a number:  What's your A1C?  

Despite the fact that your child and/or you might have done everything right and tried to find the solution to every question, the questions change on a daily, sometimes hourly basis like the weather on Mount Everest.  The human body is an amazing creation, able to handle complex changes with seemingly little effort - until it doesn't. Then, we are left to guess, to calculate, to take notes and read books to try to achieve it with imperfect tools.

Our A1C came back today - our "report card".  The A1C is a blood test that indicates the average blood glucose levels over the past three months.  Normal is below 5.7 and for a teen in puberty, they are happy if it is below 7.5.  So you want to know, don't you?  How did we do?  Did it go down or up?  Did Nightscout or pumping make a difference?

And I read again the paragraph above again.  We've grown.  Grown to not be afraid all the time, grown to trust each other and give in decision making that could have dire consequences if wrong. Grown to see what is really important in a life.  Learned to not be daunted by less than perfect results but to move past it to solutions. Learned to let go and realize some days, there is no answer and diabetes sucks.  Learned to function while dead tired from night testing or exercise induced lows.  Learned to live in the moment and enjoy the view from where we are.  Reaching the top isn't nearly as important as the climb.  

One day, I'm hoping that there will be no arduous climb, and there will be no reason to be on the mountain. I'll be walking to try to reach that day.

Quotes from Men

Dh:  Your hair is like a casserole.
Me:  Excuse me?
Dh:  It always looks better the second day.

In to see doctor for swollen tonsils.  I can feel them in my throat.
Doctor:  You have children?
Me:  Yes, three.
Doctor:  You breastfed?
Me:  Yes, all of them.
Doctor:  Well, you know how after you finish breastfeeding things hang a little lower...?
Me (thinking):  Did you just compare my tonsil to a boob?

Son is cleaning off table.
Dh/dad:  Son is cleaning off table??  (clutches chest)This is the big one! You hear that, Elizabeth? I'm coming to join ya, honey!
Son:  Who's Elizabeth?

My Life as a Vampire

Each night, most of  us sleep unaware of the most interesting of things.  Vampires like me, those drawing blood regularly to check the blood glucose of a child with Type 1 Diabetes, often roam the house, zombie-like, seeking juice. I pour him a cold one (juice). He flings his arms, unaware and I'm doused with sticky liquid.  I set a timer, twenty minutes for his body, waiting for a better number.

Sometimes, I'll look at my Kindle, sometimes Facebook, looking to see who else is up.  I know the blue light might interfere with my ability to sleep, but that is a good thing.  Can't. Fall. Asleep.  So I sit on the rug waiting...reading...and learn that STINK BUGS are attracted to blue light.  One lands in my hair. Instinctively, I brush it off and use my favorite flashlight to look for it.  Mistake.  Attracted by that light, it dive bombs me.  There is something in his aggressive approach that repels me.  I don't know where he went.

At 3:00 a.m., still waiting, the electricity goes out.  Silence.  We had been warned this would happen for repairs, so I'm thinking it might be awhile before it restarts.  I marvel at the silence, at how very quiet - BOOM - everything rushes back on including my son's two fish tanks which now seem unbearably loud.

This event wakes our elderly dog, who decides this would be a great time to go out to the bathroom.  Ignoring this request has lead to nasty surprises in the past, so we head downstairs. All of the considerable number of animals are confused, and decide it must be time to get up and go outside. As for Daisy. does she run out, pee and come back?  No, she goes on a walkabout.  I cross my fingers because I can smell skunk in the air.  Fifteen minutes go by.

She returns with an air of total innocence

I observe things like the way my son sleeps, always on the side we've placed his continuous glucose monitor (CGM) sensor.  (If slept on a long time, it can produce a false low due to compression.)  His cat, who likes only him, comes by to see what I'm doing to her boy.  She never sleeps at night.  She licks his fingers of blood smears, and then begins to bite his legs.  I wonder to myself if I could train her to be a diabetic alert cat, but muse that cats are too unpredictable.  She would only work when she felt like it.  

"Don't mess with me" face

After living another whole day, while everyone sleeps, I return to my now cold bed, but find a cat in the middle and it is warm under him.  I move him over and take his spot.  Time to grab an hour or two for myself.

A Certain Age

My husband wiggled his eyebrows at me while I changed into my "at home" clothes after Church.  "You're looking good," he smiled.  I looked heavenward and thanked God that aging means that eyesight begins to fail just about the time he might say, "I didn't need to see that."  That is an argument for intelligent design.

I still haven't figured the evolutionary or intelligent design principle in making a random hair begin to grow on one's jawline after a certain age.  Is it supposed to make one (it hasn't happened to me yet, of course) less attractive?  What would be the point?  A clear message from the powers that be that "those days" are over?  I pretended that I'd been cooking with orange juice and got sticky, and one of the dog hairs flying through the air attached to my chin.  Now, I have to get my glasses to look periodically, for my eyesight has also failed and as far as I could see, there was nothing there.

Part of me is motivated to see I can get those abs back I had when I was younger. Unfortunately, that part is in my brain and isn't connected to my legs which would have to move to accomplish this.  On a cold day, a cup of tea and a good book do not move me forward but do bring comfort.  Stay warm, y'all.

The Sweet Truth

Having a son that is a Type 1 Diabetic means that one of my "jobs" is learning about nutrition.  Blissfully ignorant before his diagnosis, now I know the effect of foods on our bodies even if we who are not diabetic cannot immediately see a graph showing the minute by minute impact.  (My son wears a continuous glucose monitor.)  I thought I was a pretty savvy mom when it came to food.  We don't eat out a lot, we cook at home with fresh ingredients.  We always have a salad. We don't drink a lot of soda, and if we do, it is diet.  After his diagnosis, we paid much more attention to portion sizes.

The diet soda is a concession to eating pizza or spaghetti.  It's required.  It's written in the Constitution or the Magna Carta or somewhere that you must have Coke with spaghetti, pizza, oh, and Cincinnati Chili.  Must.  Don't consume artificial sweeteners?  Spare me the lecture.  With T1D, "all bets are off" I was once told.  You do what works.  So in our house, artificial sweeteners may mean you can have an apple and peanut butter with your pancake and (artificial) syrup.  You'd rather have the maple syrup?  Me, too.  But tell a growing boy who is still hungry after that one pancake.

So, thinking I'm smart, I make as a very special treat - Cinnamon Sweet Rolls - but...I use Splenda brown sugar.  Splenda = artificial sugar = lower carb.  Right?  WRONG!  After figuring up the carbs by calculating the amount in each ingredient, I tell my husband how these rolls will be healthier because I used Splenda, less carbs.  How much less, he asks? Good question.

I get out Calorie King app and look up brown sugar.  4 grams = 4 carbs.  I look at the Splenda label.  2 grams = 2 carbs.  BOTH have 1 gram per carb and the same number of sugars.  Only difference?  Per gram, Splenda has more, not less, calories.  I began doing what I should have done before lovingly spreading the weighed Splenda over the buttered dough and cinnamon.  The manufacturers want you to use half of the amount of Splenda as the amount you might have used for brown sugar.  Tricky.  The Splenda is sweeter, gram for gram, so they intend for you to use less.  But, that doesn't work in all recipes. Sweet rolls are made by spreading the sugar over the dough and when rolled, gives a particular appearance.  These rolls were no more healthier than had I used (less expensive) brown sugar.  

I was totally taken in.  

They were, however, by all reviews, delicious with black coffee.

Merry Christmas and Happy New Year!

I would say that sending a paper copy of our Christmas and New Year’s letter is “so last year”.  I would, that is, had that letter materialized.  Posting this one online, I can argue that I’m saving trees (paper) and printer ink.   Maybe, it will sit here on my old blog, lonely, or maybe, it will stare at me accusingly, daring me to write yet again.   So, with this letter, a beginning to a new year and perhaps a new habit.  We hope that you enjoyed the Christmas season in health, surrounded by family, and made wonderful memories to relish during the coming good year.

Many changes give stories to write this year. Our “farm” grows quieter, though we still boast a few too many domestic animals for my dear husband.  Moving to town is a draw for us, yet what would we do without the scream of the fox at night, or the sight of deer crossing the backyard in the evening?  Each night, I look up at the stars after feeding the remaining horses, and I think about life. 

William remains at home, pursuing more indoor activities such as building a computer gateway to his virtual world, earning his second degree red belt this year in Tae Kwon Do, and at nearly thirteen, setting a good pace to soon be taller than at least all the female family members.  

In the mountains of Colorado, lives musical newlyweds who love, laugh and forge a future.  After each earned their Bachelor of Music degree from Baldwin Wallace University this past spring, our daughter, Lauren, married her best friend, Jesse Hodgson in an intimate wedding in northern Ohio.  Settling in Denver, they work, teach music, and Lauren is studying to complete her certification in Dalcroze Eurythmics (a method of music education using movement).   We are joyful to be joined with the Hodgson family and so happy for Jesse and Lauren.

“Storylines” was the theme of Anna’s senior thesis show to complete the requirements for her Bachelor of Fine Arts.  Three beautiful paintings, each 5’ x 7’, were hung in the Grunwald Gallery of Art.  She will graduate this coming spring with minors in art history and French, planning to take a year to work before continuing to graduate studies. 

Mid-summer also brought career changes for K, as he joined Restaurant Supply Chain Solutions, a company contracted with YUM! Brands here in Louisville. He has already delved into interesting projects for the fast food industry.  His side “occupation” is as chief builder of floating frames and canvases for Anna’s paintings. 

As for me, I have spent this year as a pancreas.  Yes, you heard right.  Late in 2013, William was diagnosed out of the blue with Type 1 Diabetes.  I have spent a year studying endocrinology, nutrition, nursing, exercise physiology, and hacking medical devices to provide better control of a disease that never takes a day off.  We remain hopeful that the research to cure this disease is moving forward quickly, and in the meantime, we push for any advanced medical technology available, and some that aren't yet.  #WeAreNotWaiting

Being a pancreas is a full-time job, so I have retired from Lowe’s paint desk, having developed strong arm muscles and much knowledge about home improvement that I do not plan to use anytime soon. 

If you are still reading, know that we cherish every connection and friendship, and look forward to being part of this coming year with you.

Throw Back Thursday: The Best Dressed Mom Award

I often tell my children that if I don't embarrass them sometimes, I'm not trying hard enough. It seems, looking back at old blogs, I have done a fine job of it.

http://lifetimelearning.blogspot.com/2009/04/it-was-912-p.html

First posted on April 8, 2009

It was 9:12 p.m. last night, two minutes past the time I must leave to pick Anna up from art exactly at 9:30 if I don't get behind someone going well under the speed limit. Still, I took time to go to the big chicken coop, fearing that the raccoons might strike. Before shutting the door, I reached over as is my custom to feel the backs of each one, counting them in the dark and training them to be accustomed to my touch. Each gave a "bawk!" and I closed the door.

Returning to the car, I wasn't five feet up the driveway before the smell hit, an overpowering, nasal opening odor. I must have stepped in "it". Or, could it be the dogs, as I had two of them with me. Did they have an accident? No matter, I could not be late, and I decided to just drive and figure it out once I reached the art studio twenty minutes away.

As I drove, the smell became overpowering and I thought that Anna was going to object highly to to the smell in the car. While still driving, I slipped off one shoe, and then the other, smelling each to see if it was the offender. Perhaps I could drive home barefoot, tying the shoes to the roof of the car or something. I could not throw them out - my beloved "cow pie" shoes. But, it wasn't my shoes. The smell, I had decided, however, was distinctly chicken sh@t.

Shrugging, I inched down the windows, but it was so cold outside, I was obliged to also turn on the heat. The fan blowing the heat also blew up the offending smell, so turning off the heat, I shivered the remaining miles.

Arriving at the studio, I stepped inside to tell Anna I was there. "Uh, MOM!" she said pointing at my knit jacket. I looked down and saw that I was covered in chicken crap. Down my front and along my sleeve, I had a nice, green chicken "cow pie". Evidently, when reaching into the coop, and being short of stature, that isn't all that easy, I had rubbed against the door where a chicken had sat and shat.

Quickly, I unzipped the jacket, balled it up, and stuck it near the door for retrieval as I left. I had a pleasant conversation as usual with the ladies there, and we left.

Once in the car, Anna and I started laughing. Very grateful I was that she saw it before anyone else.  I told her I could hear her instructor coming out and in her Georgia drawl wondering "what is that smell"? Anna began to laugh that hysterical beyond funny tearful laugh as she pictured her mother coming into the studio covered in chicken crap and being found out by the ladies there. Because she is soon to get her driving permit, I was thankful she didn't have it yet given that she could not stop laughing which might have impaired her driving.

I guess I'll never get the "best dressed mother" of the year award, or even the "doesn't really smell that bad" award. I supposed this is one of the stories that will go in the "remember when mom....." book.

Throwing Cold Water on Your Party

When the ice bucket challenge hit the media, I was amused and impressed that the idea was generating loads of cash for ALS research. I wondered what JDRF (Juvenile Diabetes Research Foundation) could come up with to draw similar attention.  Maybe it is a “fad”, but a very profitable one.  I hate cold water and shivered  just to watch it, and yet still laughed and called some people "babies". 

Already, much has been written about the merits of this campaign.  Hey, they raised a good amount of money. They even got celebrities to take notice. We only wish we’d thought of it first, and yes, we should all be donating to a number of charitable causes.  The ice bucket challenge brought some fun to it. 

Here is MY challenge to all of you who did the ice bucket challenge:

Look up:  what is ALS?

Describe:  how do you know you have it?

Know: what it is to live with it?

Research:  is there a cure?

Donate:  the video is cute, now put your money where your ice cubes are. 

At our house, another incurable, life-threatening disease took up residence, uninvited, changed our lives.  Before it did, I knew NOTHING of what some parents go through on an hourly basis for their children.  I knew NOTHING about parents that shook in their beds wondering if they gave the right dose and their child would accidentally die and it would be their fault.  Now, I know.

Empathy comes with great challenges, and so I think – I know NOTHING of what it is to live and die with ALS.  Because of the ice bucket challenges, I looked it up.  Here are challenges that brings more serious awareness from a wife of a man with ALS: 

"Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.

Before you eat your next meal, take a good, long look at the food. Inhale deeply and appreciate the aroma. Now, imagine never being able to taste that – or any other food – for the rest of your life.

·    Put two large marshmallows in your mouth and have a conversation with your friends. How many times must you repeat yourself? How does this make you feel?”

This, this is ALS.  And so when you dump that water, and for a second feel that cold ice water on you, remember that there are people out there that live with that anxiety of cold ice water in their veins on a daily basis because they have ALS, or Type 1 Diabetes, or Cystic Fibrosis, or Cancer, or love someone who does.  This was fun, but the diseases are serious.

You will change your clothes and go back to school or work or your normal schedule, congratulating yourself that you somehow today made the world a better place.  But did you?

Come walk with me this Saturday for just a mile in my shoes.

http://www2.jdrf.org/site/TR?fr_id=3953&pg=personal&px=9191327

 

Mirror, mirror....

I won’t deny that I've looked in the mirror before and thought about giving myself a redneck face-lift with a little duct tape.  I smooth my skin back from my nose and mouth carefully to not affect my eyes.  “There, that’s what I used to look like.”  I can imagine being at some function and having someone say, “Hey, you've got a little piece of gray tape stuck behind your ear”. Worse, having one side come loose and not the other, causing innocent bystanders to think I've just suffered a mini-stroke. 

Vanity really isn't my thing and the older I get, the less I care what other people think about me.  Family and friends, mind you, remain important feedback.  I sometimes do hear that my shirt has cat hair all over it or my hair is a bit frizzy or I have a wild hair growing from my chin.  All duly noted.  I try to maintain a little standard – basic make-up and deodorant, but lately, well, occasionally I’ll find I was so wrapped up reading that research paper, that I ran out the door without mascara!  Gasp!  And then, I’m like “screw it”, who is going to care what I look like anyway??  Kind of freeing, that.

I seesaw between embracing the older woman I’m becoming, and despairing.  I don’t recognize myself sometimes because inside, I’m just a stronger and smarter version of my younger self.   And then I go to Walmart and “Gary” asks to see my ID for a case of beer.  I laugh.  You’re so sweet to pretend, I tell him even though I find that kind of flattery annoying.

“No, really, I must see your driver’s license to purchase beer.” Seriously?  Gary, it is quite obvious I am not under 21 years old.  Really.  Gees.  (And my driver’s license is in the car.)  I tell him what a dumb rule that is and that they don’t card old women at restaurants.  But at Walmart…well, an employee was fired last week – didn’t card an undercover policeman.  See?  I tell him to keep his beer.

Today, I was prepared and Chelsea was given my driver’s license before she asked.  She said she thought it was silly to card anyone over forty, but then told me she would have carded me because I look under forty.  I decided I didn't mind such flattery after all and kept my receipt to take the online survey to report what a good cashier I had today.  Perhaps I retain a bit of vanity after all.

Don’t Let the Pricks Get You Down

“My wife has a big mouth and told my doctor.”  As a result, my farrier* explained, the doctor tested his blood glucose levels with an HbA1C test.  It was 8.8, not bad for someone doing nothing to control it, but raising the possibility of future complications.  (For most people without diabetes, the HbA1C, an average measure of the levels of your blood glucose over the last three months, would be less than 6.  For an adult with diabetes, doctors recommend working towards under 7 and for tight control, between 6 and 7.)

He was in denial.  His mother has Type 1 Diabetes.  About ten years ago, he started having symptoms but couldn’t stand the thought of pricking his fingers.  This man, stepped on while shoeing horses, likely other injuries due to the physical nature of his job, could not prick his fingers to draw blood.  “You don’t understand,” he said, “my fingers are so callused from work I have to use the highest setting.” He mimicked holding the lancet a foot from his finger. "Man, you have to hold the lance a little closer," I laughed, "not come at yourself like a knife stabbing."  My son, I told him, pricks his fingers upwards of ten or twelve times a day.  He’s twelve.  The farrier giggled.  (Yes, this big brute of a guy's laugh sounds like a giggle.)

He didn’t know if he has Type 1 or 2 or a variation in between.  At least five variations of diabetes are described.  Greatly overweight but with a family history, it could easily be either.  Working hard physical labor with horses, insulin caused him to go low and he almost passed out once so he quit worrying about diabetes.  “I can’t do shots.”

After telling him how easy the pump is, how insulin delivery can be suspended, and how the insertion is automatic, (“I could do that”), William’s pump insertion failed last night and the needle failed to retract, causing pain.  We had to do it again.  Don’t tell the farrier!

I’m hoping that our experiences can in some way help me to help other people.  As he climbed up into his old rusted truck, I told him I expected an update by the next trimming.  

Now, if I can get the horse dentist to understand that my horse's stall is NOT "the little boys' room" aka a porta-potty.....

*For you non-horsey people, a farrier trims horse hooves about every six weeks, so we see each other regularly.  They also shoe horses, but my horses go "barefoot".

If It's Broke, Fix It

It comes in threes.  No, I’m not talking about celebrity deaths though it seems to be heading that way this week.  I’m referring to things breaking.  I’m at two, and waiting for number three. 

The first “crisis” occurred yesterday morning when the Keurig seemed to have encountered a kidney stone and could not pass water.  It moaned like a man who equates these stones to having a baby (never having had that experience, mind you) and dispensed 1/4^th of a cup of coffee.  We were faced with breaking out Mr. Coffee and the Folgers, a bad way to start any day.  I’m usually pretty good about keeping up with the descaling every few months but it has been a bit busy here, yeah?   We left the “Precious” with vinegar in it all day and I’m happy to report the stone has been passed and all is well with the world.  (Well, the coffee might taste a wee bit like a pickle, but that will resolve.)

The second breakage was not a crisis but an annoyance.  I am a Dexcom G4 junkie.  My son wears a CGM, continuous glucose monitor, which gives a constant readout of his blood glucose levels.  Using this constant feedback, I can fine tune his insulin levels and try to run his BG as close to normal as safely possible.  I can also stand back during sporting events and know that he is okay or throw carbs at him when needed.  (Not literally, silly!)  We were flat-lining it yesterday due to walking nine holes of golf and recent level changes.  Then awaking in the night as I often do (I’m old, give me a break), I looked at the receiver to see “Transmitter failed.  Replace soon.”  The transmitter is the “brain” of the CGM and is attached to his body via a sensor. 

A quick Google taught me that though I’d been under the false assumption the transmitters last a year, the new “improvements” mean that it might only make it six months.  We’re at eight months.  (I’m wondering if these improvements are similar to the geniuses that forced Windows 8 on us?)  Seriously though, love our CGM and very grateful for it when it is working.  It may last a week after you see the error, and it may not.  Phone calls to order one, insurance to contact and trying to insert a new sensor next on my list.  They are not cheap!

So that is two things broken, but possibly fixable.  Maybe that means there won’t be a third?

Update, on further reflection and more coffee, I realized I was overlooking that the iron is breaking (it will work if you smack it hard), my computer mouse died, and the computer itself has a fan not working and it is beginning to malfunction.  That makes a group of three, so I'm on my second group of three.

Stepping Up

I overheard the Senator ask the CDE (Certified Diabetes Educator) with genuine concern in his voice, “But it is getting better, right?  There are better treatments out there now.”  There to receive a “Hero” award for helping the Juvenile Diabetes Research Foundation (JDRF) obtain much needed $150 million dollar funding, he had it right that this time in history, technology is making it possible to more tightly manage Type 1 Diabetes, an autoimmune disease for which there is currently no cure and no definitive cause or prevention. 

While a cure is dangling out there just beyond our reach, parents hack iPhones to get a readout of their children’s blood glucose remotely because T1D is always lurking, we connect our children to devices, take blood samples a minimum of eight times a day not to mention multiple injections or pump insertions, getting up multiple times in the night to make sure their child's blood glucose doesn't slip dangerously low, there are more and more children being diagnosed at an alarming rate.  Dr. Kupper Wintergerst, a leading endocrinologist and researcher for T1D, indicated at a recent JDRF chapter meeting that the fastest growing population of newly diagnosed is among the very young.  Babies, toddlers.  Think of it – poking your baby’s finger over and over throughout the day, followed by multiple injections.  Babies.  It used to be that T1D mostly reared its ugly head during the early teen years, hence the old moniker of “juvenile” diabetes.  In today’s world, T1D is still ahead of the race, claiming more each day, in fact during the next hour and every hour of every day, 3 or 4 families will be diagnosed with Type 1 diabetes, changing their lives forever. Those diagnosed will range in age from newborn to over 40 years old.

Even while at this reception, one of the moms, there with her T1D diagnosed son, worried about her younger daughter.  Home with the “flu”, the symptoms were not unlike those that her son exhibited prior to diagnosis.  I heard she had taken her to the hospital last night “hoping” her daughter had the flu because the alternative was shattering. 

While I can tell you Type 1 Diabetes has brought some “gifts” and is making me a better parent, the balance of the catastrophic changes to my son and our family outweigh the good.  I don’t mean to whine – I am more than grateful that I live in the United States, that we have excellent medical care and insurance, and that my husband and I are capable of making life as normal for our son as possible.  But we are of the privileged.  Not everyone is, and for them and us and for my son, I will be writing and asking you to consider learning a little about the horror of T1D so that we can continue to obtain funding to find a cure, or at the very least, prevention for my grandchildren.  (There I a genetic link to T1D and autoimmune diseases.)

My son would like that I stay silent and that no one “know” about his disease.  He is twelve years old, so of course he doesn’t.  Yet, the only way to beat it is to embrace it and find people, like the Senator, that are willing to find the funding for continued research.  My son has stepped up, been on the news twice already, and is going to be walking with us at the JDRF Walk to Cure Diabetes.  My son is “my” hero, because despite the difficult turn his life has taken, the daily obstacles and risks, the long term possible complications, he is standing up and walking forward. 

I’m hoping that you might consider walking for a day in our shoes by joining us at Churchill Downs on August 23^rd.  If you already have plans, maybe you could send William an encouraging note (I’ll share the comments with him) or make a $5 pledge so that he knows you walk with us in spirit.  I intend to never give up and always to fight.  I hope you’ll join us.

William's page