Thursday, August 21, 2014

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.

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.

Wednesday, August 20, 2014

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.


Saturday, August 16, 2014

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.

Friday, August 15, 2014

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".

Wednesday, August 13, 2014

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 1/4th 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.

Tuesday, August 12, 2014

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 23rd.  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.


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