Friday, November 20, 2015

Phone Ettiquette

I felt about two inches tall. It has been a long time since I've been chastised by a nun, and even in those days of elementary school, very rarely. She shook her head and looked at the back where I was sitting, my cell phone in my hand. "We will have to revise our cell phone policies to make them more clear." She wanted undivided attention to her talk on the history of the beautiful mother-ship we were visiting with an eight grade religious education class.

Protestations arose in me: "I'm using a medical device here!" I wanted to shout. Instead, I pocketed it until I slid out of her radar. Normally, this would not have happened. The iPhone receives from the "cloud" data on William's blood glucose levels. I have my iPhone paired with a Pebble watch and under many circumstances, have a continuous readout of William's blood glucose on my wrist available at a glance. This Church, however, was built to withstand a nuclear or radio wave attack, and I was getting no data on my Dexcom Share app (which needs cell phone coverage to run), and in turn, the watch also showed "NO DATA". As a chaperone, I sat down in the back, taking the opportunity to see if I could get it working again. William's BG will often drop low when casually walking around.

Her irritation with iPhones is justified, yet it made me aware of the disadvantage of using the iPhone as our receiver for CGM (continuous glucose monitor) data readouts. People will likely think we are checking our Facebook or Twitter feeds or texting friends. How dare we pull out our phone in a meeting? Even when I glance at my watch, it appears I'm checking the time, an "are we done yet?" sign. I wonder how many times I have said, "No, I'm just looking at his BG, we're good!"?

Though I tried to shake it off ("she has too much starch in her drawers"), I was raised to be the good little Catholic elementary school kid. It did make me think more about the use of iPhones as medical devices, though, and the need to educate the public that sometimes, they are a lifesaving tool.

We have the Dexcom G5 transmitters now for continuous glucose monitoring, and William is anxious to change over from his current system. The G5 eliminates the need for him to carry anything other than his iPhone. He no longer has to carry a small receiver every where he goes. You might think what is one small receiver? Well, when he leaves the house, he currently has to count nine things which must be in his bag and must go with him everywhere. If he is outside, he used to have to have his iPhone in one pocket, Dexcom receiver in the other. And, remember to bring them. I know to you that sounds like not much, but to a 13 year old boy, having to remember to get both pieces to just go outside to shoot some baskets - big deal. I do my best to stay right on top of the best technology, so here we go. I hope we like it.

Thursday, November 19, 2015

Slip Sliding Away

There I sat in the Walmart parking lot, wondering what I was going to do. I really, really needed chili powder. The chili was already in the pot and simmering back at home sans chili powder which really makes it not chili but meat and bean soup. Sure, I should have checked for the main ingredient before starting. Perhaps it is because I'm perpetually tired or maybe because I'm getting old. Probably just not organized enough.

How could I still go in? I had no choice really, it was close to dinner time and though I live only two miles from the store, at this hour it takes twenty minutes to traverse and that's if there is no train which, in the infinite wisdom of the town's forefathers, runs down Main Street with no quick way around it. 

My sandal had broken when I twisted my ankle getting out of the car. If you are my age, you might have said my "thong" had broken. In my growing up years, we always called them thongs - a slip-on sandal that had a strap between the toes.  I'm not sure when the word was usurped to mean a naughty pair of underwear, but I had to school myself to not use the word again. After all, if I told you that I could not go into Walmart because my thong had broken, well, I don't even want to put the image in your head given my age. And, after all, who could see? But clearly, my "flip-flop" was broken and and had no spare. I could not go in barefoot, could I?

I found a piece of old gum in my little trash container and stuck it on the shoe, shoving the strap down into it. My foot held the gum in place. This did not work at all, but I found that if I shuffled this foot forward, like a teenager in (appropriately named) "slides", I could use the band across the top to keep the shoe on. So, in I went, step, slide, step, slide. I pretended I was someone with a foot injury and should I encounter an acquaintance, planned to claim I'd stepped on a nail.

Fortunately, I did not see anyone and quickly grabbed the big $9 plastic container of chili powder, determined to not run out again. The minute I got home, the shoes went in the trash. The chili, however, was a success.

Friday, November 06, 2015

What's That Smell?

All families have stories about other family members that they retell. Since I won't be able to write today, I thought I'd re-post a story that likely will be recounted long after I'm gone. 

Published April 08, 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.

Thursday, November 05, 2015

The Pebblebee

Organization is not my strong suit. I'm a "piler". I have piles of things. Oh, I generally know where stuff is, as long as no one messes with my piles. Ironically, I've been "accused" (complimented?) of being organized by people that have clearly never visited my house. Perhaps they heard me talk about a great new idea I had for organization that I had one day (and discarded as too much effort).

Type 1 Diabetes, though, well, that requires that I become more organized at least concerning diabetes things. I do have it in me, it just doesn't come naturally. See, T1D requires a lot of "stuff" and all that stuff has to go everywhere that person with T1D goes. Some of that stuff is VERY expensive cutting edge technology. Losing these things would be disastrous.

Before those of you with no T1D connection tune out (yawn - "she's talkin' about di-uh-BEE-tus again), listen in. I'm going to tell you about a product that everyone should have. And, by the way, I am in no way connected to the company nor receive anything from the company to review this product.

Pebblebee Honey is a small disc that can be attached to anything you don't want to lose. I have attached one to William's continuous glucose monitor (CGM), and one to his remote control for his pump (PDM). It uses bluetooth technology to communicate location to an iPhone. Using the Pebblebee app, he can locate the misplaced device by causing it to either chirp a sound, or by flashing a light. The display shows if you are getting closer or farther away. Should it have been left somewhere (agh!!!), it will tell you the last place you and the Pebblebee were in the same place. Those of you with a pancreas, you could attach one to your keys or your purse instead of an insulin pump.

Connected with a key ring to the CGM

Hidden behind the PDM in the silicone "skin"

Why the Pebblebee and not the Tile? The Pebblebee is $25 each but lasts 2 years. The Tile is reported to last one year. At the end of two years, you can replace the battery on the Pebblebee for a low cost and continue to use it. The Tile, on the other hand, must be discarded and a new one purchased each year. So, it has a slightly higher up front cost but long term, a better value. 

We do have a procedure for not losing these devices: he is always to return them to a basket that holds his supplies while at home or to his backpack when he is away. Yet, sometimes, he'll forget or take the CGM outside with him or lay it down while doing something. Gone are the "well, where were you when you last saw it?" questions, replaced with "use your app and find it".

The word "pebble" seems to keep popping up. I wear a Pebble Smartwatch to monitor his BG.

Recently, while reading The Story of Science by Hakim to William, she writes that the Latin word for pebble is "calculi". So the words calculate and calculus came from the root for pebble.  Until numbers were widely used, pebbles were.

I heard coyotes last night. In. Our. Yard. I went outside to gather the cats in and worried over my horses. Using a flashlight, I walked up the dark driveway. I convinced myself that the rustling noises in the woods at the fence line were deer. I didn't see anything and heard no more, but was relieved to see my horses unharmed this morning. Glad I don't have chickens anymore.

Wednesday, November 04, 2015

Bearly Making It

It's safe to say that I'll not ever get William to sleep in a tent again, and getting him to hike with me might even be more of a challenge than it already is. In an effort to show him how books can be funny and wildly interesting, I've been reading aloud "A Walk in the Woods" by Bill Bryson. Chapter 2 is about bears.

For some unknown reason, William has always had a concern about bears. I've assured him that Kentucky has almost no bears and sightings are very rare. This proclamation was ruined several years ago when he, my sister, nephew, and I booked a cabin near the Red River Gorge. All the trails were closed because - you guessed it - a bear was sighted. See? We do have bears.

The chapter on bears (thank you Mr. Bryson) did nothing to assuage his fears. The book has a few words probably not appropriate to but very interesting to a middle schooler:

What on earth would I do if four bears came into my camp? Why, I would die, of course. Literally shit myself lifeless. I would blow my sphincter out my backside like one of those unrolling paper streamers you get at a children's parties - I daresay it would even give a merry toot - and bleed to a messy death in my sleeping bag.

After I explained what a sphincter is, he laughed for several minutes after this passage. He begged that I continue reading, and although I think in part out of interest, read aloud time is also a delay in other school work.

While reading to him, I had my iPhone timer checking the ribs I was cooking for dinner: sear for 6 minutes on the grill each side.

I guess we are having pizza for dinner. Luckily, I don't expect the charred meat to attract Ursus americanus.

Trying to stay on the edge of technology, I have ordered the Dexcom G5 continuous glucose monitor. The upgrade means the transmitter will bluetooth directly to his iPhone with no need for an extra device to capture the data. One less thing to carry is good. Diabetes requires lots of "things" to carry around.

Friday, October 30, 2015

The Elephant in the Room

I remember it was a beautiful day, warm and sunny, the last days of summer. It was also the last day of life as we knew it. We were fearless and completely ignorant of what the next day would bring.

"Before" at Big Bone Lick State Park - the photo of a very sick (undiagnosed) little boy

And yet this year, it was a week before I realized that the two year anniversary had passed unnoticed. It's not that the elephant is no longer in the room. It surely is. It raises a loud trumpet every single day, sometimes moment, of our lives, but we've moved into a new stage of experience and the non-D part of our life has moved to the forefront.

I read posts by parents in online forums and you can smell the fear. I remember it. I remember thinking I gave the wrong dose, my hands shaking as I called the endocrinologist at 1 a.m. for reassurance on more than one occasion. I remember being so sleep deprived that I accidentally increased his basal insulin instead of decreasing it, causing his blood glucose to go even lower. I remember how I would feel ice water in my veins when I saw a number in the 50s.  I remember raw emotions that over-reacted.

William has asked me what I thought the day he was diagnosed. There was no fear. I didn't know enough. I knew enough to know the symptoms but not what life would become. I was in the stage of unconscious incompetence - I didn't know what I didn't know.

Maslow's Four Stages of Competence

Then, we got home from the hospital with our box of supplies and I realized - I don't know shit! I pledged to William that no one would work harder than I would to learn about this disease, but my reading and study, though necessary, highlighted my Conscious Incompetence: I knew what I needed to know and do but not enough experience to handle it. Fear kept me from making, as Scott Benner puts it, "bold" decisions. In fact, at first, I was mad at Scott for advocating to be bold with insulin (another blog post coming) through his podcast. But, he was right.

What makes this disease so hard is that the only way to rid myself of fear was to take risks, to make mistakes and forgive William and myself for them, to be bold, to work hard. Experience will move one to Conscious Competence: diabetes will never get better but you'll get better at managing it. There are days when we dip in and out of Unconscious Competence, where moving through our day we add temporary basals on the fly, throw in a unit or two of insulin, oops too much here's juice, "okay, whatever". (Double arrows down still give me a heart attack so I'm not a ninja yet.) It feels a lot like flying, diving, dipping, taking currents around obstacles. But don't for a second congratulate me. I can't ever turn my back on that elephant. Although humans have sometimes learned to manage them in captivity, they've been known to kill.

Disclaimer: This blog is about our love of learning, and more recently, also about my son's diagnosis and life with Type 1 Diabetes. It is in no way intended as advice, medical or otherwise. Consult your own doctor if you have questions about your medical care.

Wednesday, September 16, 2015

Where are you, Abi?

His eyes were hazed and unfocused.  Clearly, mental illness, drug addiction, or alcoholism had him in its grips. My "job" at the soup kitchen that day was to go around with pitchers and refill drinks. Each time I passed him, he waved me over.  "Come here," he said in a thick African accent, smiling broadly. Each time, he quietly said something. He wanted more spaghetti. I have pretty eyes, a nice smile. He wanted a hug. I hesitated briefly. He was none too clean. I asked his name.  Abi (aa-BEE).

Later, he got up to leave and came back to our drink station. He put his arm around me and said to someone, I don't remember who, that I was now his sister. He walked out into the world where he lived, on the streets. I think of him often: how he came here, why he was on the streets, did he have family? Of all the people I encountered that day, his openness, his insistence on interacting with me burned him in my memory.

One other client struck me hard. A young girl sat quietly eating her lunch.  At her side, was a stroller holding, I'm guessing, her three month old brother. Her five year old sister sat across from her, her backpack still strapped on. Where were their parents? Who leave a three month old with a girl looking to be no more than eleven years old? Who sends children to eat a soup kitchen filled with (mostly) homeless men? I wanted to take them home. What happens to that baby when the two older ones started school this fall?

As I poured, I made sure to look directly at the lunch goers and smile. All were polite, thankful, grateful for a smile and direct look.

"Where'd you get that swab?" I was asked.  What? What is a swab? Familiar with swag but not swab. He touched his head, "Swab. Cap." I was wearing a white ball cap that was a Junior PGA Golf hat, taken from William. I'd have given it to him but I had to keep my hair covered.

One man went around asking all the workers for a rag. He wanted only some clean, dry cloth to clean himself. Imagine: no wash cloth to wipe your face. Something so very basic we take for granted. Just those couple of hours really have dug at me. At night, I look up at the stars and the night sky. Winter is coming. Where will they all go? How will they stay warm? Yes, I know the woman with the scarred face doesn't really have allergies (as she told the kids) but is a meth user. Yes, I know a good number made bad choices and that some, like in the general public, aren't good people. Nowhere have I read that we are called to serve the "worthy" only. Mostly, I saw people that wanted someone to really see them and smile.

My "brother" is out there somewhere. He needs a blanket for the winter. William and I are going to try to collect enough blankets to give each person served there, up to 500 people, a blanket for Christmas. It should be a good Christmas!


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