I’m not being overly dramatic when I say this should be mandatory reading for anyone who comes in contact with a person who has diabetes - and that is pretty much everyone in this country (and quite possibly, the world).
The best article I’ve ever read about the psychological manifestations of the physical issues of this disease.
one of the most the most well-known diabetes blogger in the U.S. (and quite possibly, the world) and a person who has seen my ups and downs of diabetes and life since we met online before the DOC existed, Kerri just simply put my heart’s and head’s unintelligible aches into words.
This disease is not just numbers and data. It’s more than that, but often (too much), we are thrust under a spotlight (sometimes self-directed) and grilled about things that we may not have control over.
The guilt of complications, whether you have been “perfect” or like me, just “perfect” by blog moniker, is the same. We wander through days and nights with a tremendous burden that no one can take from us, but can add to the weight and guilt without knowing.
We don’t talk about complications enough, because to do so is soul exposing and frightening for anyone who wants not judgement, but understanding and support. We often, unfortunately, get judgement…. but no one judges as harsh as we do.
So, thanks to diaTribe for allowing Kerri to say what needs to be said:
Complications happen, and discussions about them shouldn’t be relegated to whispered fears in the bedroom after the lights are turned out. The language around complications needs to change from one of fault and guilt to that of perseverance and renewed hope. We, as a patient community, have the right to disclose our diabetes complications without being blanketed – and suffocated - by judgment.
Kerri says we shouldn’t just talk about it when the lights are out and I also believe that the light in which we share our complications and fears about them shouldn’t be under a bright spotlight of interrogation… starting with ourselves.
I knew that I had diabetes before I was officially diagnosed. Sitting in class, reading Time magazine, I came across a PSA print advertisement from, I believe, the American Diabetes Association. On a blackboard style background, bold, chalky white letters asked me to check off any diabetes symptoms I might have:
- Excessive Thirst - A gallon of milk, seven glasses of water, and a jar of pickle juice one afternoon? I was always thirsty.
- Frequent Urination - My teachers told me to stop raising my hand and “just go”. Hey, free hall pass. I’ll take it.
- Blurred Vision - I thought I just needed new glasses. (I wanted new glasses. Mine were not fashionable.)
- Dry Skin - I kept a small bottle of Clinique moisturizer in my pocket and slathered my face all the time. There was a dry patch that wouldn’t go away, no matter what I did to it.
- Fatigue - Once a kid who bounced everywhere, I had begun napping after school. And on weekends. And on the bus.
- Unexplained Weight Loss - 12 1/2 years old. 64 pounds at diagnosis. I looked gaunt.
- Excessive Hunger - A yogurt and crackers for snack? No more. Clear the refrigerator.
I checked them all off in my head, but because I had no idea how serious and deadly untreated diabetes can be, I didn’t tell anyone. I assumed that it was something that was no big deal.
It’s a huge deal. I consider myself lucky. My blood glucose level was in the 400s when I was finally diagnosed. I was coherent and upright and able to function. I have met others whose families wondered if their children would ever wake up from a diabetic ketoacidosis coma in the ICU.
Additional Type 1 Diabetes Symptoms
Additional Type 1 diabetes symptoms that need immediate attention from an emergency room include:
- Fruity breath (It can smell like Juicy Fruit mixed with nail polish remover; it’s the body trying to clear itself of ketones - a toxin -through the respiratory system.)
- Nausea and vomiting
- Difficulty breathing, almost to the point of hyperventilation
Additional Type 2 Diabetes Symptoms
Additional Type 2 diabetes symptoms include:
- Tingling in hands and feet (It can be painful - or not)
- Wounds or infections that don’t heal quickly, if at all
- For women, frequent yeast infections
Type 2 diabetes symptoms may not present as “acute”, but if you have any of these (and others listed above), it’s still important to see a medical professional for diagnosis. Don’t delay…
If you have any of these symptoms (Type 1 or Type 2) or if a friend or a family member has mentioned any of them in casual conversation, or if you’ve noticed any of these symptoms in someone you care about, please get them to a medical professional for testing and possible diagnosis as soon as possible.
You can help save a life.
These days, Time magazine isn’t left in a classroom for someone to read…
Like Maria von Trapp sang in the movie: “Let’s start at the very beginning/ it’s a very good place to start.” She wasn’t talking about diabetes, but work with me on this. Before we discuss what diabetes is, we need to learn some basic anatomy.
Our bodies are amazing, intricate machines. Our hearts pump blood throughout miles of tiny vessels, lungs fill and empty without us even thinking, a bite of food starts a series of events that boggle the mind. Hey! Let’s follow that bite of food and see where it goes, shall we? (We won’t follow it all of the way. Promise.)
It’s Party Time
Before food even hits your tongue, the brain is working to prepare your digestive system. It’s the equivalent of an announcer booming: “Start your engines!” The autonomic nervous systems revs up and gets ready for that, what one can only hope will be, delicious morsel to be ingested. (And your pancreas is already putting on its dancing shoes, releasing insulin if you don’t have diabetes. It likes to party.)
The salivary glands are the early partygoers of your digestive system, hitting the floor for the first wave of breaking down food into smaller and smaller bits. Amylase, an enzyme, begins to rip apart starches into simpler forms. (Polysaccharides down to disaccharides, if you want to go all technical on me.)
That bite of food, which doesn’t resemble what you put in your mouth, goes down through your esophagus to your stomach, where it hits an acidic pool party in full swing. Chemical reactions break down that food even further as the stomach churns and spits out chemicals and enzymes and acids. (If you’ve washed down that bite with a beer, the alcohol makes an early exit right there, absorbed through the stomach membrane and into your bloodstream.)
That food is now called chyme and is a slurry of nutrients and small molecules when it enters the small intestines, going from a pool party to a mosh pit, mixing with additional liquids: bile, intestinal juice, and pancreatic juice. Some of the food is absorbed and shipped off to the liver through the blood and the rest party on in the large intestine.
If there’s sugar to be had, the small intestine screams: “Winner, winner, chicken dinner!” (Although chicken is a protein, not a carb.) Think of sugar as a beautiful woman. She never leaves a party alone. Insulin is the hot guy who offers her a ride home. Home in this case is the cells throughout the body, where the sugar is either immediately used as energy or stored as fat. (Not all sugar stays pretty. Some stick around and start a cat collection.)
Wait. What About Diabetes?
It’s all about the hot guy, insulin. Insulin is a hormone that is supposed to be produced by the pancreas. I say “supposed”, because sometimes the beta cells that produce insulin decide to take a permanent vacation. (I’m hoping it’s somewhere warm and tropical and that they brought sunscreen.) In Type 1 diabetes, it’s a mass exodus, leaving all those beautiful sugar cells to dance around slowly in the blood, looking for partners. In Type 2 diabetes, there may be some insulin hanging around, but it’s not enough to clear the room. (Or the insulin is an awkward shy guy who needs help holding hands with sugar.)
In Type 1 diabetes, without insulin bringing the sugar home, they just hang out in the blood vessels. No insulin means no way for the body to get energy, so it uses the fat stores (Siyonara, cats!) to eek out energy. When the body uses those fat stores, it “burns” or coverts the fat into usable energy, leaving toxic waste behind in the form of ketonic acid. Too much ketonic acid and diabetic ketoacidosis can occur… and that can be deadly. (That’s a story for another day.)
In Type 2 diabetes, insulin may still be made, but not enough to keep blood sugars in the proper range.
Type 1 diabetics must take insulin from an external source (subcutaneously), which may involve injections or infusions using an insulin pump. No insulin = party is permanently shut down. Type 2 diabetics may use insulin or oral medications to help sensitize the body to use the insulin it produces.
So, Insulin Is The Cure, Right?
Au contraire, mon frère. (Which is French for… nice guess, thanks for playing, but no.)
Insulin is not a cure. The pancreas is broken and no amount of duct tape will fix it. Insulin is an essential hormone for the body, so when it’s not made by the pancreas, it’s got to come from somewhere. A cure for diabetes doesn’t exist. Treatment does. Careful dosing of insulin and other diabetes medications, monitoring of blood glucose levels, careful food intake, exercise and much more goes into the balancing act that 26 million Americans face.
And that concludes today’s post.
Party on, Garth.
This morning, The Kid donned her furry Halloween costume and, with the promise of candy, traipsed behind a kind lady to a room filled with older ladies and gentlemen. We were part of a toddler parade at the local Memory Care & Alzheimer’s facility and I watched as the faces of these individuals lit up when small fairies, Spidermen, Supermen, ladybugs, Dorothy clutching a stuffed Toto, and my daughter, cavorted around.
They were all in varying stages of the disease that robs them of the thing I hold most dearly: their memories.
Some clapped and joyfully engaged with the children, asking them about their costumes. Others sat quietly, staring without emotion at the hullabaloo. One man didn’t speak at all, but when The Kid batted an orange balloon at him, he smiled and tossed it back to her. She fell down, giggling, in front of him and he reached down to grab her foot and shake it playfully. She grinned at him, he grinned back, and then she took off to look at the fish tank.
When I glanced back thirty seconds later, he was gone; physically still there, but lost in himself. I saw his spark ignite and extinguish in the space of a few minutes. My heart didn’t so much as break as melted.
One of my great uncles (my grandfather was one of thirteen, so there were a lot of great aunts and uncles growing up), Bill, drifted off into the horizon with Alzheimer’s when I was young, but I was shielded to the devastation that it wreaks on a family. It’s one of my greatest fears to be diagnosed with it (along with having a fatal myocardial infarction at a young age) and here I was, face-to-face with those who live with it - and in it.
Scientists are linking diabetes to Alzheimer’s disease these days. You can read about the link here , or here, or get your scholarly info here.
In a nutshell, the people who are a lot smarter than most of the world say that blood vessels in the brain are damaged by high blood sugars and that inflammation also plays a part in the aging of brain cells. The damage can be done years before the first signs of Alzheimer’s disease show up, so all anyone can say is the same as we always hear: keep your glucose levels within range, eat healthy, and get regular exercise.
I can’t forget the happy look on that man’s face - and then the absence of any emotion - and I sit here now, wondering if diabetes will take away yet something else from me in the years ahead.
If you wonder why I advocate and raise my voice for diabetes awareness and healthy living, this is one reason. One reason of many.
I gave up.
“Jump high,” I smiled, holding onto her chubby arms and watching the curls bounce as she descended to the floor. The Kid stopped and cocked her head towards the machine. “What’s that?”
“It’s going to tell me what my A1C is. Mommy thinks it’s going to be higher than last time.” She’s already off, trying to open the cabinets underneath the sink.
And like I said, it was higher.
I texted John. “7.0% - Boo”, I type. And then Mr. Wisdom texts me back and with one sentence, puts it all in perspective.
“You used to be happy to see that number.”
He’s right. When the pendulum swung and I started to care about my diabetes and my body and my future, I had a long way to go before I saw 7.0% - and when I did, I was on cloud 9 (or cloud 7.0%).
You see, there were years that I would have been happy to just have a single digit A1C lab result. Truth be told? I think I hit above 14.0% in my teens. Yes. I know how high my blood sugars must have been. It was an overwhelmingly dark time in my life. I shudder even now, but have learned to accept the damage that I may have caused my body. It’s tough to swallow.
Nowadays, I shake my head at the old me, but I should also be shaking a finger at the current me. When I sat down with my CDE and talked about my cortisone injection and the crappy blood sugars that went on for weeks, she told me to stop berating myself for the A1C result. And I had been beating myself up in the exam room while attempting to prevent The Kid from stealing a box of alcohol swabs, thinking I should have been trying harder and doing more.
So, I am going to try harder and do more.
Try harder to not be so hard on myself.
Do more celebrating of the A1C I have.
Try harder to remember that I’m doing more now that I did in past years.
Like I said, it was higher.
It’s a good starting point.
A little reminder to all - I’m not comparing myself to anyone else when it comes to A1Cs.
Everyone has a different A1C and if it’s 14.0% or 10.4% (Another quite popular A1C for me…) or 8.0% or 5.5%, it’s O.K. - it’s one point in our life, but it’s not the end. It’s a point and it’s always a starting point. You can choose to share it out loud like me or keep it to yourself, like my esteemed colleague, Scott of Rolling In The D, who gives his own great reason. I choose to share because somewhere out there is someone who thinks that they’ll never go from 14.0% to a “normal” A1C… and I want that person to know that it is possible.
And I’m rooting for you. And me. And all of us.