Saturday, October 01, 2016

A Snake in the Grass

Many people know that Nancy Lincoln, Abe's mom, died from milk poisoning. Before a weekend trip to Lincoln's boyhood home in Indiana, I was not familiar with the plant that causes this disease. Meat or milk from a cow which has ingested snakeroot is toxic to humans. The plant is also toxic to horses and other animals, but apparently, not cows. Poor Nancy would likely have lived with today's medical intervention.

We hiked a bit about the national and state park, and having learned its appearance, I began noticing it. I wondered its purpose and why it wasn't eradicated. "It should be pulled up," I thought, "Poisonous nasty stuff." I resolved to look for it at our own place when I returned home, worried about my horses.

Here's what I found:

Yep, we not only have snakeroot, we have a hedgerow of it. Little did I know.... 
It just goes to show, don't go judging someone else's snakeroot until you look in your own yard.

"There I grew up." - Abraham Lincoln

Note: Seven deer regularly visit our backyard and eat my hostas and lilies. They apparently know better than to eat snakeweek. 

Wednesday, September 28, 2016


(In my best impersonation of The Donald)
My son is very, very, very good – let’s just say – he does a tremendous job at managing his diabetes. Everyone says that he is doing a really, really great job. All the doctors are amazed at how good his A1C is. He does tremendously. His A1C – really, really good. Believe me! You’d be impressed.

Unlike many of Donald’s statements, this one is true. William really does do a tremendous job. He really does rock his A1C. He does surprise doctors that marvel that testosterone and puberty haven’t gotten the best of us. They ask how we do it. We fight from becoming smug and thinking “we’ve got this”.

This boast to you has a purpose. We manage very well. We work hard. We put in place routines and double checks. We remind each other. I nag. And nag. We get the best technology. We are planning for a diabetic alert dog for another layer of alerts. I study. I go over reports. I try new recipes, encourage exercise. And yet, last night could have ended very badly.

It is important to understand, (and yet I know you won’t really unless you live it) that even with the greatest effort, T1Ds and parents of T1Ds live with the knowledge that the slightest mistake could be serious, even deadly. I want you to understand because there are T1Ds and parents out there struggling, working hard to achieve just normal health.  

Last night, William’s pod ran out of insulin. It gives a very high pitched alarm which neither of us heard. It’s Jeffie’s, my cat’s fault. He usually wakes me multiple times a night and I instinctively glance at my Pebble watch for William’s BG. Perhaps I was just too tired, but I didn’t wake until 5 a.m.  William, surprisingly, was already awake. (He normally will not wake to alarms.) His pump had been out of insulin for four hours! The longest one should go without insulin is two. His blood glucose was close to 300 mg/dL and he had small ketones.

You might ask where was the Dexcom (continuous glucose monitor) alarm? My high alert was off – I’d sometime turned it off because I knew he was high and the constant alarming was disturbing something or someone. I’d forgotten to turn it back on.  William’s phone was silenced. Both of these things should not happen – but it did. We screwed up. William didn’t want to wake me – he knew I must be tired if I didn’t answer the alarm.

How many times have you accidently left the house without your mobile phone? Or lost your keys or work ID? Forgot to get gas the day before and you’re running late, and now need to fill up? Forgot to bring the checkbook or cancel that appointment? Imagine that forgetting or making one mistake would make you deathly ill. I can't fault him for forgetting to change the pump. It is so easy to do.

In debriefing, we think that his intense workout before bed kept him from going really high. We put in place a better before-bed check list. We learn often, with this disease, to forgive ourselves, improve our routines, and move on. There are nights when I’m outside and I look up at the stars and wonder – how did this happen?  Why did this happen to my precious boy? He is so strong and so good. Believe me.

Note: We will be volunteering this year at the JDRF Walk this year at Churchill Downs on October 15th welcoming new families. Because we'd already asked your support during fundraising for a JDRF bike ride, we are not forming a walk team or fundraising. William and Kurt are joining a JDRF bike team in training and plan to use this way to participate next year. If you'd like to ride with us or find a JDRF bike team in your area, drop me a line.

Friday, September 09, 2016

Timing is Everything

Mass was about to start, so I turned down the volume on my iPhone and silenced it. I slid it into the handy pocket on my thigh of my new capris. Every once in awhile, I slid the phone out and checked William's blood glucose. It was still good. William was home sick with a mild stomach ache and no other symptoms. Something he ate? Appendix problems developing? A virus?  A chance to sleep in? (Turns out it was a virus.) There was no way to know and only time would tell. With BG monitoring technology and only 2 miles away, I deemed it safe enough to leave him at home alone while we went to Church.

Yet, I was concerned, as any MOD (Mother of Diabetic) would be. If he were to throw up, a crisis could develop rather quickly. My Pebble watch which normally displays his BG at a glance and notifies me if he texts, was not working. And so, I pulled out my phone periodically to check the "Follow" app displaying his BG.

Midway through, the deacon stood at the ambo, trying to make sense of the readings exhorting us to leave our families to become a true disciple (Luke 14:25-33). "Did God truly want us to hate our fathers and mothers, our wife and children, ourselves?" I'm not quite sure what he concluded. As the homily came to a close, he turned to go back to his seat, and it was deadly silent in our large, cavernous Church. I - unwisely - felt for my phone to check on William.

"SORRY, I'M NOT SURE WHAT YOU SAID" echoed around the walls of the Church. Somehow, without meaning to, I had wakened Siri. Why was she not silent?? My phone sounds were off!!?!! Mortified, I tried to silence her, but too late. I heard simultaneously a collective gasp and laughter from the congregation.

Oh, but, maybe no one would know it was you, you might say. No, see, we sit off in a section nearly by ourselves. During flu and virus season, there are less chances of having a really sick person sit behind us, having to exchange a handshake with someone that just sneezed into that hand. Getting the flu or a virus, can be serious now. So there we were, on display, so to speak. The timing could not have been worse.

We could have maybe pretended we didn't know who just did that, except my husband turned the purple color of his shirt and put his face in his hands. He could not fit under the pew, so that was the closest he could come to hiding.

This is one of those stories that will be passed down to my grandchildren, I have no doubt. I hope I lightened the day for those that laughed. I hope those that gasped can forgive me. I walked out with my head high though. I will protect my T1D warrior at all costs. And Siri, you bitch, I'm turning you off.

Wednesday, June 29, 2016

A MODern Society

When a woman is sleep deprived, constantly fighting ignorance and insurance or both, balancing many plates in the air and always worrying about the life of their child(ren) with Type 1 Diabetes, and has social media access, you do NOT go and tell said woman with already raw nerves to go anything-yourself.  

Mississippi State Rep. Jeffrey Guice, R-Ocean Springs, because a basic lack of decency, crossed that line this week. Looking for help getting through Medicaid red tape for supplies her daughter needed to, well, stay alive, this asshole representative fired off a quick email telling her to get a job to pay for it herself. Already qualified for Medicaid even with a husband working two jobs, Nichols was looking for help navigating and improving the system, not a handout. 

The reaction in the DOC (diabetic online community) was explosive. Mr. Guice has been feeling the wrath of many a MOD (mother of diabetic) as word spread of his insensitive and butt-face ignorant reply. Poor guy (not really, not an ounce of sympathy), I'm betting he doesn't know what hit him.

Increasingly, the collective force of the DOC in educating, changing technology, pushing forward treatments, and supporting each other amaze me. It reminds me of bonobos. Yes, you heard right: the smaller, cuter cousin of the chimpanzee. Bonobo females experience less physical aggression and violence from males than the female chimps because bonobo females band together and prevent it. They prefer mates that are nicer. As a result, over time, as a society, bonobos have self-domesticated and become a less aggressive, more peaceful species.

If apes can do that, why can't we humans also chose representatives that show compassion and concern for the welfare of our children and country? 

Monday, June 27, 2016

Judge Not

My impatience grew. Why were they coddling this child, letting a toddler bring offertory gifts up the main aisle of Church? Either the basket was too heavy or the child was resisting. We all sat and waited. From where I sat, I couldn't see the child. Why didn't they just pick the child up? We all sat waiting. And waiting. 

I looked at the deacon. He was smiling, not impatient. Then, I saw her. A tiny girl struggled up the aisle. She was not carrying any gifts for her hands gripped tightly the handles of her tiny walker. (I didn't know they made them that small.) Each step took great effort, her back hunched over, her legs not quite cooperating. Her mom, dad, and brother turned and smiled at her. She made it the whole way! She must have been new to the walker for their joy was unmistakable. 

More than one churchgoer wiped away tears. Several minutes of sitting seemed inconsequential now. The parents, not permissive and indulgent, were exalted.

Truly, I don't remember much of the homily that day. I just remember the lesson I learned from a little girl - Judge not. You can't always see exactly what is going on in someone's life. You can't always understand all the challenges that each family faces with their children. Have patience, and maybe, the light will shine down and show you that we each struggle. We each rejoice with small achievements. We are all truly blessed. 

Monday, May 30, 2016

Dead Tired

Two nights ago, my husband reached over in the dark and tapped my hand. My Pebble watch was vibrating that it was time for a glucose check. I didn't respond. He tried tapping my shoulder. Nothing. Alarmed now, he started shaking the top of my head. He was thinking, "Oh, God, please she didn't just die and leave me with all of this to manage." I finally woke and half awake, stumbled out of bed to go check William who had thought it was a good idea to have a midnight snack and had been a bit high at bedtime, gave himself insulin (too much, too little?) before he fell asleep.

The next morning when my husband told me his panic in the night, I laughed. I told him I'd hoped he'd miss me a little for myself and not just that he'd now have to manage all this alone. Of course he agreed that he surely would.

I was just really, really tired. Lately, the light vibration of the watch doesn't wake me. Two nights ago, I missed the alarm, but later, randomly woke up to find William had been low for two hours. Guilt set in. He was 55 mg/dL when I tested and the graph showed he'd been lower. Possibly, that was a false compression reading, but I'll not know since I missed the alarm.

It doesn't happen often, but that is the fear T1D parents carry - that it will be their fault if something bad happens. Often, parents are told to run BG higher at night to preserve their own sleep and to give more of a cushion from serious lows. Eventually, the artificial pancreas will replace pumps and nighttime lows will become more of a rarity.

As we work for tighter control, William doesn't feel his lows as much and likes to be in the 70s and 80s. This is where he says he feels good. The difficulty is that 70 isn't that far from the 50s and 60s, where I don't want him to stay for long. It takes vigilance (and a great deal of nerve) to let him stay there. Sometimes, we have to ignore the number and go with how he feels.

I re-wrote the basal program to avoid lows in the morning. I was successful, sort of, as he was 186 when he woke up. Back to the drawing board.

I'm almost done with my Coursera course "Gut Check: Exploring Your Microbiome". Next on the docket is a course about Type 2 Diabetes since I certainly have the genes for it.

Wednesday, May 25, 2016

The Poor Monkeys!

Early on, I used to go in and look at him, just to make sure his chest was rising and falling. My knowledge, after discharge from the hospital, was enough to tell me that I could make a mistake with serious consequences. I knew what I didn't yet know, the experience I was lacking. It made my heart race, my hands shake, ice water fill my veins. The greatest fear of parents of T1D kids is the "dead in bed" syndrome or finding the child unresponsive.

Not anymore. I'm not going to say that I don't have concerns about low blood sugar or that we are overly casual. We certainly treat low or dropping blood glucose levels. You won't, however, hear me say I saved my child's life with a box of juice because it just isn't true. It sounds very dramatic. It certainly engenders sympathy from people that don't and won't ever understand the awfulness of the disease. My child and I are working on saving his life daily, but not by rescuing him from lows, but rather, from lowering his A1C without significant number of lows and without a large standard deviation. Long term, this will be more important to him than a 59 mg/dL here and there. 

I was reading yesterday:

In studies of insulin-induced hypoglycemia in monkeys, 5–6 hours of blood glucose concentrations of less than 20 mg/dl were required for the regular production of neurological damage; the average blood glucose level was 13 mg/dl. Fortunately, hypoglycemia of that magnitude and duration occurs rarely in people with diabetes.

Five or six hours of low blood sugar for neurological damage. Well, now you know why I don't sleep. I don't 100% trust technology and I do check his BG at night. Extended hours of low BG are dangerous. So, I am losing sleep over lows, but I'm no longer putting a mirror under his nose to see if he fogs it up.

Plasma glucose concentrations of less than 18 mg/dl occur occasionally in people with diabetes, and dying brain cells, presumably neurons, have been reported following episodes of hypoglycemiaat plasma glucose levels of 30–35 mg/dl — but not following episodes of hypoglycemia at plasma glucose levels of 45 mg/dl — in rats. Thus, it could be reasoned that these categories are not binary and that there is a continuous spectrum with increasing risk of neuronal death at progressively lower plasma glucose concentrations. Nonetheless, seemingly complete recovery follows the vast majority of episodes of clinical hypoglycemia.

How low is damaging?

With the CGM and Sugar Surfing, we're able to head off most all lows, rarely dipping below the high 50s, which are followed by a "seemingly complete recovery". 

So while I'd like you to see me as a superwoman complete with cape and juice box in hand, the life saving efforts are more boring and long term. Day to day tweaking insulin ratios, assessing data, figuring out meal plans, pushing exercise. The dangers of high A1C and high BG are more likely to lead to complications and death than low BG. 


Had an endocrinologist appointment yesterday. A1C was 5.9, down from five months ago at 6.1. Obviously, the good doctor had not looked at William's chart because he asked if we'd ever considered getting a CGM (continuous glucose monitor). I almost snorted. William has used one since 3 months post diagnosis, 2.5 years. Yeah, don't think we could have achieved lower A1Cs without it. 

Key actions for William:

  • Becoming more comfortable with lower numbers (Note: William is 14 years old and numbers we are comfortable with are in part due to his age/maturity. I know everyone will have different comfort levels based on size and age.)
  • A tighter range for his target: right now at 70 - 160 mg/dL
  • Pre-bolus (if in normal BG range) 15 minutes before eating or longer if high
  • Not treating numbers in the 70s if steady and awake
  • Lower sleeping target: around 100s if steady, but won't treat until lower 80s and that is just so I can get some sleep.
  • Lowering the amount of complex carbs, e.g. rice, noodles, gluten free bread. Still eats them, but in smaller quantity
  • LDN: can't prove it, not recommending it, but I'm seeing smoother numbers. Just saying.
  • Exercise
  • Gluten-free and limited dairy
  • Probiotics, Vitamin D, and other supplements

Disclaimer; Nothing you read on my blog is intended as medical advice. If you have questions about your medical care, please consult a doctor, I am not a medical professional and do not offer this as advice but only my own thoughts for our own situation. 


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