Tuesday, December 29, 2015

Smoke This

My husband held the palm sized device in his hand. It was a temperature gauge that bluetooths (that's a verb now, bluetooths) to his iPhone from his new smoker. Why couldn't I, he mused, bluetooth to some other device (for example, an Android phone) which would upload that to the web, download that data to my iPhone which was bluetoothed to my Pebble watch. In this way, he could monitor the temperature of the day-long smoking of meat from his desk at work, and presumably, issue orders to those at home (meaning moi) if coals burned too cool or too brightly.

His new toy
See what happens when you are exposed to Nightscout? It makes you think that you can fly data around the world and control your smoker from your desk or presumably, anywhere. And here's the thing: it could be done. Nightscout taught me that. It could be done, but I'd have to write the code for it. It might just be easier to go check the temperature myself.

Nightscout is a group of amazing people, gathered on Facebook with the motto, "We Are Not Waiting". Started before continuous glucose monitors had the ability to send blood glucose reading into the cloud, parents of children with Type 1 Diabetes got together and for no cost, shared code, websites, directions, time, energy, and support to many other parents trying to find a way to keep their children with T1D safe while sleeping or away from them. I have to say my association with them has been one of the most amazing and empowering experiences of my life.

Back to the smoker, husband has been very dedicated to his new project, even rising in the wee hours of the morning to check the coals. One night, William was having a low and I wandered downstairs to get some juice for him. I was startled when he sat up on the couch! So he can get up in the middle of the night in pursuit of the perfect brisket! We have been treated for about a week and a half to the most marvelous meats, but we are all needing a bit of rest from eating.

Diabetes notes:
Our first G5 continuous glucose monitor transmitter malfunctioned only one month into usage. It should last three months. Dexcom tech support was excellent, replacing the transmitters and the three sensors that it took for me to realize the transmitter was failing. Large gaps in data started occurring, and often at night which was the most troubling. We are back on board with a new transmitter and it seems to be going well.  To be honest, I miss the Nightscout data and rig, but my son, not at all. He much prefers just carrying around his iPhone. I still use Nightscout for my Pebble watch, displaying his BG on my wrist.

Homestead notes:
Perhaps I should get some stones, dam up the creek and make a pond? There has been enough rain for it.

Monday, December 28, 2015

Surprise!

I found out that I can totally hoodwink the guys in the family. They had absolutely no clue whatsoever. The surprise was complete and startling. Daughters, however, seem to be able to read thoughts and minds. Anna was not surprised. Well, I mean she was, but she wasn't.

Wanting to hone my lying skills, I asked her what I'd said or done. Perhaps it was when she overheard me on the phone telling Lauren in a sappy voice that we really were going to miss her at Christmas and we were so sorry she could not come until January or February. Maybe not even that, Anna said. Maybe, she just really very much wanted her sister for Christmas and was hoping it would come true.

The best presents are the ones you can't buy


Notes:
True story: I once picked up the phone to call my mom and she was on the other end already - calling me. The phone had not even had a chance to ring.

Diabetes Notes:
William's growth spurt (and resultant omnivore eating) has created a dilemma. An Omnipod insulin pod holds 200 ml of insulin which should last him two days. He's falling short by about 8 hours. Our pods prescription is based on two day usage so eventually, he could run out of pods. I don't normally restrict carbs for him, but I am going to calculate the number of carbs per day he can have to stretch out the pod for two days. If he wants more, he'll have to take a shot. The alternative is to switch to a tethered pump with tubing and higher capacity.

Cortisol: 
On a T1D parents forum, many people reported in that they've gained weight since their child's diagnosis. I didn't at first. Working retail and worry kept the pounds off. Since I've quit, it seems a few pounds found me again. One reason? Cortisol. It seems that lack of sleep and stress cause weight gain. I can exercise more and throw away the dag-nabbit Christmas cookies, but I can't always do much about sleep. I will in the coming year work on more naps. That's a good New Year's resolution! Here's to naps!

Saturday, December 26, 2015

Change


When I was a kid, things changed slowly. When new ideas or gadgets hit the market, you expected that major purchase or idea to last awhile. Bought a phone? Good for 20 years. My dad could keep a dryer running forever. Now, your cell phone is practically obsolete as you leave the store.


The silver lining to rapid change? My dad asked me if I thought there'd ever be a cure for William's Type 1 Diabetes. I said I did, and I mean it. With computers aiding data analysis, with lightening fast sharing of results and in communication, I have great faith that he will not live with this forever. It is why I walk for JDRF, fundraise for Faustman labs and read, read, read.

But thinking about the rapidity of change, or the lack of it when I was a kid, I started thinking of words you would not have heard if you grew up in my childhood
  • Put on your seat belt.
  • Are you wearing suntan lotion?
  • Where is the remote control?
  • Where is the phone? (on the wall, of course)
  • Where is your phone?
  • Are you downloading something?
  • The internet is slow today.
  • It's hot. Let's turn on the air.
  • Text me.
  • IM me.
  • Warm it up in the microwave.
  • Walmart
My era had a strong impact on language though. You still "hang up the phone" though it sure isn't as satisfying as slamming down a receiver. You still "roll up the windows" by pushing a button. We sometimes "nuke" our food, though we're a little more comfortable that the technology is safe.

What words do you hear now that would have had no meaning in your childhood? Can you think of any other words that are still used today but the technology or meaning has changed?

Thursday, December 17, 2015

Hope


https://cclou.org/wish-list/baskets-of-hope/


We can choose to allow hatred and fear eat at our very souls, or we can chose to bring hope to the world. We can listen to politicians tell us that we must turn away those seeking solace and safety, or we can open our arms and hearts.

There is risk in this. There are people that wish us harm in this world whether because of their religion, their politics, or perhaps just because there is something very wrong with them. I will not let that fear guide me. I have yet to find the Bible passage that tells me to take the safe route. 

I am an older woman who seemingly can't really make much of an impact on this world. I have no great wealth nor power, no outstanding talent or voice. It would be easy to fall into the apathy of not doing anything or saying anything because it would have no impact. What is my voice against a billionaire's? But there are thousands, no, hundreds of thousands of us with enough, more than enough riches - yes, to other countries, we have riches - and if each added her drop to the bucket, the bucket would fill. 

The program is called "Baskets of Hope" but I think the gift of hope is to the giver.


Monday, December 14, 2015

I'm Too Old For This

As my daughter said, it makes for a good story. Eyebrows certainly go up when I respond that I injured my hand on a BMX course. "Excuse me?" I know to them I'm an old woman; a small old woman. My bike had a fat, BMX-type tire and I didn't see the jutting rock on the trail. Over the handlebars I went. I'll spare you the photos of my injuries, which extend beyond my hand. The good news - no broken bones.

See those rocks? #Imtoooldforthis
How did I come to be on an underground BMX course? Groupon. It will be the death of me. I look on Groupon for places to take William and his friends. My goal is to keep him physically active. The Louisville MegaCavern frequently has different activities - zip lining (BTDT), ropes course (BTDT), Christmas lights (BTDT). So this was intriguing.

Carved from beneath the Louisville Zoo and a now defunct KMart, I envisioned some big jumps, yes, but perhaps small swells for pleasant riding for the newly initiated. No. The only other people there were two adult BMX racers who declared that this course was harder than BMX race courses.

Why was I there? Spectators are verboten. You must have a bike to be on the course. I said that I was there to assist my son with Type 1 Diabetes. The manager assured me that they had a Gator and if they found him passed out, they'd bring him to me in the room where I could wait.

"Excuse me," I said, "I usually try to treat him BEFORE he passes out."
"No sorry, can't do," she says. "Insurance," she says.
I wonder what the insurance people might say if he passed out on the course and they didn't see him on their monitors (I saw them not watching).
"I'm sure you don't have someone who is trained to administer glucagon."
"HOW DO YOU KNOW??" - she says (nastily).
"Okay, you're right. Do you?"
"Well, we have people trained in first aid.  And we can call EMS." and "We've had people here with autism."

It was all downhill (excuse the pun) from there. There was no making her understand.  I got on the bike. My second reason for going was to make sure that the hills didn't bring out bravado and end in broken bones. The boys started out wisely and built up their abilities. It seems I was worrying over the wrong bones.

The three amigos
In the end, I found that the CGM and cell phones did not work at all underground. William experienced only one low later in the ride, which he felt rather than was alerted to by technology. The boys came home with only a few scratches, conquered their initial trepidations, and had a good time. The good news for me is that though I am old, my bones aren't that easy to break.

Saturday, December 05, 2015

Rabbit Holes

Do wooly worms predict the severity of winter? In search of the truth, William and I watched videos online about the species. We've found several in our walk-out basement (which, to me, predict that it is currently cold outside). The video taught us that the "hairs" on the wooly worm allow it to freeze more slowly and with cryogenic properties, it can winter outside and not in my basement, become frozen, and be revived in the warmer spring days to become a moth.


Drawing more out the lesson, I asked if he knew the root word, "cryo" (cold) and the uses of cryogenics. Always interested in the bizarre, he became intrigued with the idea of someone with a disease being frozen and revived after a cure was found. But then, of course, 100 years from now the world would be different and most people you know now would be gone. 

We did a bit of internet research and found that in some cases, only the brain is frozen. Presumably, the owner of the brain is hoping that brain transplantation will become possible and they will be able to find a donor body in the future. This discussion segued into space travel and distances and eventually tapered off.

The ideas continued to swim around in my head. What were the ethics and implications of brain transplantation? I asked my elderly father, mostly wheel-chair bound, if it were possible for his brain to be transplanted into the body of a healthy twenty year old woman, would he do it? No way, he said. I pushed - so if you knew you were dying, you'd rather die than be a twenty year old woman with your own brain, but another full life ahead of you? No, he'd rather not. Women, he said, have to put up with too much from men and he had no desire to try to live as a woman. I've asked several people this question and the answers are very enlightening. Would you do it?

Sometimes, I have the experience of an new idea coming up several times in a short time span. I have never thought much about brain transplants but in the book I'm reading, Stiff: The Curious Lives of Human Cadavers, Mary Roach discusses this very subject just when I was contemplating it! (And yes, I read and think about weird things. Sue me.) In it, she discusses that medically, it probably can be done but it hasn't been pursued because of the many problems it raises. One is that a donor body can supply many donated organs and save several lives, where as a brain transplant saves only one and would be available to only the very wealthy. (My medical insurance harasses me over insulin pumps. Imagine if I asked for a whole new body!)

Notes:
The wooly worms I've seen are mostly brown.

It is 29 degrees outside. William and I are collecting blankets for the homeless to be given out at Christmas. We've collectd 187 so far. I'm thinking Christmas cannot come soon enough for those that won't come in to the shelters.

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.

Notes:
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.

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