I Get It Wrong Often

Last night my Middles, (13 year old teen boy) was over 400 before going to bed.

He was 238 before dinner and bolused (used his insulin pump to deliver insulin into his body) for dinner with extra insulin to correct the high.

That was 4 hours before he was going to bed.

He was surprised by the high blood sugar before going to bed.

The infusion site he had on was only 36 hours old.

I chose not to drill him regarding what he might have eaten after dinner that could have resulted in the high but I did assume he had eaten something or somethings.

I just told him to correct (bolus insulin for the high) and to go to bed.

I set alarms (two) on my phone to wake up and check his blood sugar around midnight.

I don’t remember hearing the first alarm.

I do remember hearing the second alarm and I remember silencing it.

I awoke with a start at 4:11am realizing my neglectfulness.

In the moments walking between my bedroom and my sons bedroom my heart pounded against my ribs. The fear parents of children with diabetes experience when we know there is the slightest possibility our kids could have experienced a sever low at night can be monstrous. The relief when we see our child sleeping peacefully while their chest slowly rises and falls with each breath is equally as immense.

My boy was sleeping soundly and breathing normally. Exhale.

I checked his blood sugar.

403.

Fuck.

My assumption that he had eaten some rogue food between dinner and bed was incorrect. Instead the high before he went to bed was very likely due to a failed infusion site (place that insulin from his pump is infused into his body). The site needs to be replaced a minimum of every 3 days – his most recent site was only 36 hours old and shouldn’t have failed.

I had to wake the child and ask him to come downstairs to replace the site and insulin in his pump.

He didn’t complain. He felt like crud and he knew that insulin was the only way he would feel better.

Ok he whined a little. It was 4:15am and he didn’t sleep as soundly as I had first imagined.

New site, new insulin in his pump and a large bolus to correct his blood sugar.

We don’t own a ketone meter (a small device similar to a glucometer that checks the amount of ketones are in the blood via a finger stick/drop of blood), ketones are often present during periods of extreme high blood sugars. Ketones are produced when the body burns fat for energy, excessive ketones poison the body and when combined with dehydration can result in ketoacidosis, a life threatening condition.

Before he came into the kitchen to get his new site and insulin I heard him in the bathroom. It was too late to ask him to use the ketostix (paper strips with a small patch on the end that is chemically treated to change color if ketones are present). The ketostix are not a very accurate way to test for ketones – because the paper sticks check the urine for ketones the result is about 4 hours delayed, meaning not the most accurate ketone level, but at least it is an indication of what was happening in this body. Alas – he used up all his urine so no ketone check.

Sent the boy back to bed.

He will need to go to school regardless today. I am scheduled to work.

In the hour since I awoke with a panic I have been berating myself for yet another fail.

We own Dexcom CGMs (continuous glucose monitors). CGMs check a person’s blood sugar every 5 minutes and have alarms that can alert the wearer and others that blood sugars are high or low. Had he been wearing his CGM we likely wouldn’t have ever got to be in the 400s last night and certainly wouldn’t have stayed in the 400s all night as I slept through phone alarms.

Had I done the nagging parent thing at bedtime to determine if he had actually eaten between dinner and bed I might have been able to determine that the high was in fact due to a failed infusion site rather than by a teen that likes to snack and forgets to bolus.

Had I just stayed up between 10pm and midnight I would have not been sleeping at midnight and I would have been able to replace the failed infusion site 5 hours ago vs. letting my son sleep with such dangerous numbers.

Like I said, I get it wrong often.

I’m sorry middles.

Ps. In the 40 minutes since I wrote this and went to take a shower for work I spoke with my husband. He confirmed that he observed Middles eating multiple tangerines before checking his bedtime blood sugar. Thus, it is likely he was high before eating the tangerines but also likely he forgot to bolus for the tangerines. Suggesting that while he bolused for the high before bed he neglected to take insulin to cover the tangerines.

Sigh……

You Are Enough For Me

IMG_1063

What does insecurity cause?

Fear

Anger

Depression

Resentment

I have been insecure with myself for nearly my entire life.

I’ve rarely thought of myself as attractive or smart or funny or worth anyones effort.

Insecurity leads to destructive behaviors and poor decisions fueled by fear, anger, depression and resentment.

So my wish for the remainder of 2015 and all the years to come is that my family and my friends always feel they are enough for me.

That may sound odd, maybe even a bit arrogant. That isn’t my intention. I can’t change how others in this world make my children, husband or friends feel, but I can change how I make them feel. I want them to always know that they are enough, that they are my joy, that I am their biggest fan and that they are my world.

I don’t ever want to be the source of their insecurities.

That is a hard wish to fulfill as a mom of 3 children with diabetes.

There are endless questions regarding diabetes.

“Did you bolus?”

“Did you check?”

“What’s your blood sugar?”

“Do you have fast carbohydrates on you?”

“Why are you so high?”

“How much insulin is in your pump?”

“When did you do your last infusion site?”

Those questions can often feel like attacks. They aren’t. They are just questions.

The hardest part is those questions are asked daily often to different children at different times, but that doesn’t matter since the other children hear the questions all the time. It is an almost endless narrative.

I don’t want it to be their internal narrative.

Diabetes is hard. It is constant. I want it to be nothing more than white noise.

Feeling like you are enough is a powerful thing. Feeling like you make a difference in the lives of others gives you strength and motivates you to do more while knowing you don’t need to. Feeling unconditional love encourages us to love ourselves.

I don’t ever want my kids to think they aren’t enough and I’ll be damned if I let diabetes get in the way.

 

 

 

 

 

 

Can You Spare a few Dollars? My Blood Sugar Is Low.

Yesterday I took my daughter and 3 friends into Seattle for a concert.

The concert was scheduled to begin at 8pm. It was general admission seating and a sold-out show. That meant lining up outside the venue hours before the show in order to get a good seat.

Of course it’s December in Seattle which meant constant rain and wind gusts.

We got into the city at 4pm and I got the kids settled outside the venue in the line with water-resistant blankets, ponchos and hot chocolate.

My daughter had put on the Dexcom G5 CGM (continuous glucose monitor) sensor a few hours before and was able to monitor her blood sugar via her iPhone. Thanks Dexcom – what a great advancement in diabetes care!

There was construction happening on the bridge connecting the Eastside with Seattle and I had no intentions of having to sit through the traffic so rather than dropping the kids and returning home I hung out at a shopping mall, had dinner, took in a movie and relaxed in Barnes and Nobel with a coffee and a book.

After a enjoying a salad and some crab fritters in the mall I ventured out onto the Seattle sidewalks to get some shopping done.

Among the many holiday shoppers, families visiting the Nordstrom Santa and riding the carousel, there were many homeless souls holding signs, playing music, and huddled under overhangs for a brief respite from the rain.

I always try to have a few dollars in my outer pockets for those in need. I gave out $7 in my first excursion from the indoor shopping center.

I put the few items I purchased in my van in the parking garage and went to check on the kids. They had been out in the weather for a bit over 2 hours at that point. The so-called ‘water resistant’ blankets were soaked through. The venue doors were due to open in 30 minutes so I collected the sopping wet blankets, gave some reminders to the kids to not accept any food or drink from strangers, always stay together and locate emergency exits before taking their seats.

I avoided asking my daughter about her blood sugar. She had it covered and I wanted her to know I trusted her to manage her diabetes. Still wish I would have asked her to ‘share’ her CGM info via the cloud but alas – she is such an independent soul.

I put the sopping wet blankets in the van and headed up to the theater to watch a movie.

I was actually extremely excited I was going to have the package of Red Vines completely to myself.

I saw the Tom Hanks movie. It was decent albeit a little slow.

After the movie I returned to Barnes and Nobel and purchased a latte from the cafe. The rest of the mall was closed.

It was 9:30pm. The concert only began 1.5 hours earlier and there were two opening acts. I knew it would likely be 10:30 or even 11pm before the concert ended (concert didn’t end until nearly 11:30 btw). Despite the mall being closed the streets were still alive with pedestrians and shoppers enjoying deals at businesses outside the mall.

I meandered up and down the avenue window shopping and people watching. I had finished my coffee but was thirsty due to the copious amounts of popcorn I had enjoyed with my Red Vines. There was a small market open about a block up. I set off to get a soft drink. As I waited for my turn at the cross walk an older black man approached me.

He had a backpack and a number of coats on. He walked with a limp and wore a baseball cap. His beard was graying but well-trimmed. He was an average height with a slight build. His face was friendly but worn.

“Excuse me, I’m a homeless veteran. My blood sugar is low and I was hoping you could help me get some food.”

He had large clear dark brown eyes. I can’t remember if he wore glasses. Weird I would forget if I had to look through glasses to see those bright eyes but I just can’t quite remember. He spoke confidently but with humility. I could sense he didn’t like asking for help but also recognized he needed help.

“I’m sorry, I’ve given out all my cash.”

Pause

“But I’m heading up to that market. If you wait here I will come back.”

He walked beside me, other pedestrians parting or moving aside for us as we walked.

I asked him which branch of the service her served in.

Army.

He had served for 28 years. He told me of his various deployments, his job in the army when stateside, and the hostile engagement that left him with shrapnel in his right leg and cost him his career in the service. He was given good medical care when he returned from deployment, including rehabilitation services. He still has a good deal of pain. The pain and PTSD lead to substance abuse and ultimately left him homeless at times or struggling to stay a float at other times. He was receiving VA disability assistance due to his combat injuries but he said the government reclassified his disability and reduced his benefits in September. He said the same has happened to many of his VA friends. He still receives medical services at the VA clinic but it can be 3-4 months before he can be seen. He said despite his past substance abuse he had been sober for a long time now. I don’t know what a ‘long time’ is but I remembered thinking – living on the streets, having to ask strangers for help, not knowing where meals would come from or how long his medications would last – to me I would think a day would be a long time. I believed it had been much longer than that for him.

I went into the market alone and purchased my soft drink and took $20 cash back.

I returned to the gentleman and handed him the cash. Instead of walking off he walked me back to Barnes and Nobel. There was a dinner buffet place he planed to go to around the corner.

On the way back I asked him how he was feeling. Was he taking insulin?

I had remembered how he said he felt a low blood sugar. He said he was ok and going to eat. He didn’t take insulin, he used Metformin (an oral medication used by many people with Type 2 diabetes that can help manage blood sugars when used with meal planning). I didn’t ask anything more about his diabetes.

The remainder of the block we chatted about how so many Veterans are forgotten after returning from deployment with service related injuries causing them to be medically discharged. How he wishes more can be done to take care of the soldiers that return home but are less than what they were when they left. I could see so much in this mans eyes. Pain and pride and hope.

Before we parted he held out his hand. A thin yet strong hand with calloused fingers and trimmed nails. He said his name was Kevin. I shook his hand and told him I was Tina. I thanked him for his service to our country and said what a pleasure it was passing the time with him. He did the same and continued walking.

After he left I pondered why this man chose me in the huddle of folks waiting for the cross walk. I hadn’t made eye-contact until he addressed me. Would I have engaged in a conversation with him had he not said diabetes? Other folks had asked me for money after I had exhausted the $7 in my outer pockets but I had just shaken my head and kept walking mumbling an apology that I was out of cash. Why this man?

I’m not a big believer in religion let alone angels, but if I was, I would have thought I had met one.

He may not have meant to leave me with anything but a hand shake and a smile, but he left more.

He left me with humility and gratitude.

 

 

Elle & Coach

IMG_0879

Back in September I was asked if I would like to receive and review a copy of Elle & Coach by Stefany Shaheen.

Coach is a D.A.D, a diabetes alert dog. Elle is a CWD (child with diabetes).

I responded to the invitation with candor. While I have not been anti-D.A.D. I haven’t been pro-diabetes alert dogs either. I have a couple of friends who had awful experiences with a particular dealer in DADs and I also had some misgivings regarding how having a service animal for diabetes could potentially label the PWD (person with diabetes) as being disabled. Without knowing where Coach came from I shared that I would be happy to read the book and provided that Coach didn’t come from a particular dealer I would be happy to share my thoughts.

I received my copy of Elle & Coach in September. It happen to come on a day I wasn’t scheduled to work and for a few hours I devoured the first half of the story. However, before I started reading I flipped through the book until I came to the chapter that revealed where Coach had come from; the organization that trained Coach was not the dealer I am familiar with so I was happy to invest my time in learning about Elle, her family and her best friend Coach. Life, a new school year, work, and the beginning of the holiday season meant less time to read and write blog posts so here I am a few days into December finally sitting down to share my thoughts about Elle & Coach.

Stefany writes in a way that allows the reader to believe she (Stefany) is sitting at the kitchen table sharing her story over a cup of tea. Stefany begins her story with something anyone who has diabetes or has a child with diabetes can relate to, the diagnosis story. While all diagnosis stories have unique circumstances they are also very similar to each other. Something isn’t right, there is excessive thirst, exhaustion, excessive urination, changes in behavior or attitude and often times the belief that the person about to be diagnosed has a stomach bug or some other minor illness. For parents of children diagnosed one or both parents often just know something isn’t right. Some diagnosis stories coincide with other events such as a family vacation or a holiday while other stories begin on a random weekday and culminate in an extended hospital stay. Regardless of what time of year, the location of the diagnosis, the age of the person diagnosed or other life circumstances of the family, one thing remains the same for all those with a diagnosis story – life changes for everyone involved and a new normal emerges.

As a mother of 3 kids diagnosed with Type 1 diabetes I am no stranger to diagnosis stories and while the two subsequent diagnosis were less eventful than my youngest sons diagnosis (the first child diagnosed) I remember vividly every moment of each. Still the first diagnosis; the one that landed my son in the ER where he lost consciousness, was revived and stayed 5 days in a room in the same hospital wing as children with cancer while his dad and I learned about diabetes and how to keep our 2-year-old alive, is the diagnosis I relived as I read Elle’s diagnosis story. Stefany shares her experiences in the hospital with Elle in a way that allows all readers, regardless of past experiences, to experience the fear, pain and exasperation of learning about diabetes and how to keep a child alive after diagnosis. I tell you this because this book isn’t just a book for people ‘in the know’ to read and relive. It is a book that will allow extended family, friends, neighbors and the general public a better understanding of what it is to manage diabetes. It is never a pity party or a plea for sympathy. It is a story of a brave and clever girl diagnosed with a life long chronic disease that while difficult to manage is manageable and as the reader continues on through the book he/she will understand that diabetes doesn’t restrict what can be done – it just changes how things are done.

Oops – I got ahead of myself, back to the story.

I believe the most powerful moments of each persons life typically begin with “me too”.

I didn’t count the number of ‘me too’ moments in this book but I assure you there are many, including how for parents of cwd and pwd – diabetes is often the last thing we think about before bed and the first thing we think about in the morning. Then there are the daily diabetes reminders and the fear that our questions as parents are seen as nagging. No parent wants to be the nagging parent and we all wonder if we nag too much or not enough. Since I have a fully functional pancreas I can’t speak for pwd but I know as a parent I am constantly asking if I am doing enough, do I have the best tools for my child(ren), do I do too much, will they be safe, etc. I am guessing many adults with diabetes ask the same questions of themselves. Stefany’s questioning of her own support, the tools she and Elle used to manage diabetes and some unique events, lead her to research diabetes alert dogs.

I don’t want to tell you where Elle and her family got Coach. I really want you to read the story for yourself because I don’t want to take away from the moments in the story you will experience the same joy and relief that I did while reading it.

I will say that while I still have concerns regarding diabetes alert dogs being the best option for all pwd or cwd I do feel Coach has been a priceless addition to the Shaheen family.

A pet is a full-time job. Well, maybe not all pets – cats are pretty self-sufficient and I’m pretty sure a fish won’t wake you up in the early morning for a walk, but a dog is a huge commitment. A service dog is an even larger commitment because the dog needs to work. It can’t be a part-time service companion and Elle agrees. If you are considering a diabetes alert dog or any service dog for the many reasons dogs are trained to be service animals, it is another reason to read Elle & Coach.

You can pick up a copy of Elle & Coach at a bookstore near you or order a copy online at Amazon.

You can also read more about Elle & Coach on their Facebook page.

Diabetes is never a one-size-fits-all disease. Every person, every child, diagnosed will have different experiences. There is no magic formula that allows for perfect diabetes management. What worked last year, last month, last week may not work tomorrow. The human body is ever-changing. Our life circumstances are ever-changing. I believe the best way to approach diabetes care is acknowledging the ebb and flow of it all and finding the resources that best fit your family and life. For some that may be a CGM (continuous glucose monitor), for others it may be a huggable, playful companion that has your back. It could also be that having an endless stream of numbers or a pet (service dog) that has to be fed, walked, and with you always may be too much. The point is – everyone is different and the best thing we can do for each other is respect the choices of our brothers and sisters in the diabetes community and beyond.

Act Justly, Live honorably, Walk Humbly and Love Fiercely