McGinnity
November is T1D Awareness month
St. James Pottery is teaming up with the Beaver Island Rural Health Center, and Island Treasures Resale Shop to raise funds for the Health Center to purchase an HbA1c machine, Diabetes Management Analyzer.
Where did this idea come from?
Since my son's diagnosis of Type One Diabetes, I have wanted to raise awareness about what it is, and how it affects those who live with it. For me, that means doing it through art. I came up with two ideas- Dexcom vases, and mugs. In some ways these were two separate ideas. The vases were to express the day to day life of living with T1D, and the mugs- to raise awareness of the symptoms one might experience before diagnosis.
For the mugs, I was thinking of the words "Tired" and "Thirsty," both would go great on mugs, and they are two major symptoms. I wanted half of the proceeds from these mugs and vases to go toward T1D awareness. The problem was, there is not a whole lot of organizations doing that from what I could tell. I was trying to find an organization that was truly having an impact, but it was so hard to tell which ones were. I didn't know where this money would do the most good. That's when I started to look at who had the most impact on us, what would have helped us more at the beginning, and in the future, help others. It was the Health Center just down the road from me. They did an amazing job saving Killian's life by knowing the urgency and getting the Coast Guard to come pick us up, but one thing I remember in that frantic blur was someone explaining over the phone "We can't do that test here, we have to fly bloodwork off for that." I don't know what it was they wanted to test, but I do know how limited the Health Center is in that regard.
Now we need to have his A1c checked every 3 months, and I wanted them to have the ability to do that from our Health Center. I inquired about an A1c machine, and considered buying one (they make some pretty simple ones), but through that I found out that they were trying to purchase a machine that would do that, and more. That's when I knew where the money should go, and started taking steps to make that happen.
Starting in November my vases will be on display at the Beaver Island Rural Health Center, and available for purchase. T1D awareness mugs will be available to purchase at St. James Pottery Studio. Half of everything raised will go to the Health Center, and Island Treasures Resale Shop will match my donation.
Dexcom Vases
A Dexcom is a brand of CGM (Continuous Glucose Monitor). It reads blood sugar by measuring the fluid just underneath a person’s skin, and reports it every 5 minutes to a graph that can be read on a smart phone. The facets, and dots going between them, on these vases are what blood sugar looks like on the graph of a Dexcom. For those who live with T1D (or their caregivers), they sometimes live in 5 minute increments. Every 5 minutes a new dot appears. Each of these 5 minutes are the longest minutes of my life when my son has low blood sugar. In the middle of the night I stay awake, being patient in hopes that he will soon rise above 70 mg/dl and I can get back to sleep. When he is at school I watch and wait to see if it goes up, or if I should make a phone call to see if everything is ok. You see, low blood sugar can be fatal if not treated immediately for someone who is insulin dependent. Insulin injected into the body will continue to pull glucose out until there is nothing left. The brain needs glucose, the entire body needs glucose to function (and insulin to put it into the cells). Thankfully, the treatment for hypoglycemia (low blood sugar), is easy. It's sugar! Juice boxes are literally life saving implements at our house.
When the dots are running steadily in range, there is little worry. The day can move forward as normal, and these dots can fade into the background, but they will never go away. When the alarms go off, it becomes front and center again whether you want it to or not. Deciphering these graphs to see patterns and know how to adjust insulin dosing is a regular task for someone with T1D. A person’s insulin needs change like ebbs and flows, affected by activity, food, growth hormones, sickness, and stress. Too much can kill you, and not enough will kill you, or cause major health problems in the future. So staying in range is a daily goal that is not always reached, but everyday we try.
T1D facts
There is no way to prevent T1D. This is because it is caused by an autoimmune disorder. The immune system of people with T1D, attacks the insulin producing cells of their pancreas until they can no longer make insulin.
When this happens, the person (many times) will experience DKA (Diabetic Ketoacidosis), a life threatening condition that needs immediate attention.
DKA Symptoms: Intense thirst, frequent urination, extreme fatigue, weight loss, dizziness, blurred vision, irritability, vomiting, acetone smelling breath, labored breathing, dehydration, sugar in urine, sharp pain below the ribs.
My son had all the symptoms, but I had never heard of DKA. Many people haven't. And many parents take their kids to the emergency room only to be turned away being told it is the flu. There are children who die every year, needlessly because of this. If you take your child to the emergency room, or an urgent care facility for flu like symptoms, insist on checking their blood sugar. I guarantee you they have a meter and test strips, and it takes only 5 seconds, but could save their life.
A bit of our personal experience
The flu was going around, it was early January after Christmas Break. Killian stayed home from school complaining of a sore throat. He slept all day, then felt fine in the evening. The next day he went to school with no problems. The following day he went to school, but asked to be picked up at lunch. When I picked him up he complained about dizziness, blurred vision, and nausea. He said he thought it was a blood sugar issue. I didn't know why he thought that, it sounded like the flu to me (I'm embarrassed to say. The only thing I knew about diabetes at the time was type 2, which is a gradual onset). When he got home he slept all day. He ate dinner, but he could not keep it down. The next day, he couldn't keep anything down, not even water. Two things that got my attention as being weird at this point was that he never had a fever, and he never lost his appetite. In fact he was starving, begging for food and water, but anything we tried he could not keep it down. It was night time and I was googling things like appendicitis, and pancreatitis because he said he had a sharp pain below his ribs. Everything I tried googling didn't fit, but at this point, I just knew something wasn't right. He was throwing up, and begging for water all through the night. In the morning I called the person on call at the Health Center to see if I could bring him in for an IV. He never really woke up when I got him dressed, and we had to carry him to the car. He is a deep sleeper, so I didn't think much of it. When we got him there (less than a block from our house). The practitioner took one look at him and called 911. She said he had to go to the hospital immediately.
Looking back, in the weeks leading up to this event, I now see all of the signs. He was thirsty, and because of that he was peeing a lot. I never thought to google these symptoms, and when he started feeling sick, I didn't put two and two together.
I remember noticing that when I was cleaning the bathroom, the floor around the toilet was sticky. I even googled "sticky pee" because I wondered if this was something I should be concerned about. Not much of anything came up, by the way. But if you have a boy, and you notice sticky pee around the toilet where he missed...yes, be concerned, it does mean something! It means he is peeing out sugar, which means his blood glucose is over 180 mg/dl.
Sometimes I get angry thinking of how I missed all of the symptoms, and I want there to be more information out there about DKA, and T1D. When I asked the nurse in the PICU how people normally get diagnosed she gestured to Killian and said, "like this." I couldn't believe it. I thought, "why do people have to come so close to death, to be diagnosed?" Especially healthy kids who are just going about their life. It feels like it just came out of nowhere. It basically does. T1D is not something that happens gradually over years like Type 2. The onset is quick- within weeks, and there is nothing that can be done to prevent it. It is not brought on by lifestyle or anything that we have any control over. It can happen to anyone, and it can happen at any time.
