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…
The concept is not pleasant, especially for the cat, but here’s the explanation of the paradox: a cat, a flask of poison, and a radioactive source are placed in a sealed box. If an internal monitor detects any radioactivity, the flask shatters, releasing the poison that kills the cat. “The Copenhagen interpretation of quantum mechanics implies that after a while, the cat is simultaneously alive and dead.” (Thanks, Wikipedia.) It’s both alive and dead…if you don’t look inside the box. Open that box and you see the cat either alive or dead, not both alive and dead. “This poses the question of when exactly quantum superposition ends and reality collapses into one possibility or the other.” (Yeah, Wikipedia. That totally went over my head, but it sounded cool.)
This post is about diabetes and not quantum physics or superpositions or reality collapses. Promise.
Here’s what I take away from this paradox:
- If I was Schrödinger’s wife, I wouldn’t have let him own a cat. Or a dog. Or a kid. Or even a plant. He probably had access to a radioactive source (esteemed physicists aren’t always sane, you know?), so…
- There are things in life that are in a state of unknown. (Here’s where the diabetes part comes in…) Before you are given a diagnosis of diabetes, you are the cat. You are simultaneously not diabetic and diabetic. You intelligently know that you might be, but might not be, so as long as you don’t open the box, you can live in that “quantum superposition” state of being both (even though we’d all prefer to be not diabetic…or alive, in the case of the cat).
I heard about the TrialNet Screening for Type 1 diabetes a good while ago. This isn’t a bunch of local yokels sitting around with pie in the sky ideas. There are centers all around the world working together for a common goal: prevent Type 1 diabetes.
TrialNet screens close blood relatives of people with type 1 diabetes because relatives of people with type 1 diabetes have a 10 to 15 times greater risk for developing the disease than people with no family history. I’m one of those “no family history” people. Would I want to know? Schrödinger’s cat would definitely be…out of the bag.
Please take a moment to stop and groan at that bad joke. I’ll wait.
What is the TrialNet Screening for Type 1 diabetes about?
The Pathway to Prevention Study is a two part study - screening and monitoring. A tablespoon of blood will give the study researchers enough to analyze for certain autoantibodies (proteins made by the body’s immune system) that could indicate that cells in the pancreas are damaged. What is amazing is that certain kinds of autoantibodies can be found in the blood years before type 1 diabetes occurs. The autoantibodies they test for are GAD, ICA-512, mIAA, ICA, and ZnT8.
Results are given to you by the researchers. If there’s no autoantibodies present, you can be re-screened at a later date (There’s nothing certain in life, so…). If the screening blood tests show that these autoantibodies are present, the study will ask the relative to participate in the monitoring part of the study.
Depending on the number of autoantibodies found in the sample, there could be annual or semi-annual monitoring.
Who can participate?
If you are the lucky relative of a Type 1 (and I say lucky, because we are a super duper bunch of peeps…):
- 1 to 45 years old and have a brother, sister, child, or parent with type 1 diabetes, OR
- 1 to 20 years old and have a cousin, aunt, uncle, niece, nephew, half-brother, half-sister, or grandparent with type 1 diabetes.
You might not be able to be in the study if you use certain medications, such
- Medicine to lower blood glucose.
- Medicine that affects your immune system.
- Steroids. (This may include asthma inhalers.)
Why would you do it?
For the fame and fortune and millions of adoring fans? Nope.
The decision is your own, but by participating in the study, you may (and when I say “may”, you know that means there are no guarantees) be able to participate in other studies if you do have autoantibodies, including prevention studies. Yes, I know that right now, there’s no way to prevent Type 1 diabetes (despite what some stupid people say on the Internet), but we don’t know what the next few years will bring. I never thought I would look down to see a graph of my blood glucose on a monitor next to me, but here we are. I’m hopeful for the future of medicine. Each person that is tested gives the researchers more data. That’s a good thing.
For more information on TrialNet - and how you can sign up for online screening and have blood drawn wherever you are in the United States (which is new and a very cool thing), go to the Pathway to Prevention site here. They will also be screening at the Friends For Life Conference in Orlando, FL in July, so if you’re going to be there…. consider it.
I always wondered how I would feel if I was my brother or my niece or daughter, who are all eligible to participate. With a single blood test, they could learn if they were at an increased risk of developing Type 1 diabetes.
And while it hasn’t happened to me, it has happened to my sweet friend, Christina of stickwithitsugar.com. (You can read her story of TrialNet and how she feels about Schrödinger and his cat.) (And you can give her a little love, too.)
I know that when the time is right, we’ll have our kiddo tested. And then we’ll open the box.
I’d like the box to be empty.
April 4, 2020
You knew what the doctor would say when she stood in the doorway of the examining room, staring at the expedited lab work . The checklist in Time magazine you read in class a week earlier gave you all the clues. (And sweetie, you really should have been studying…) Mentally checking every box next to the symptoms, it said: “You might have diabetes.”
Now it’s confirmed, but you have no idea what that really means. Mom and Dad do however, so their crying and whispering to each other is justified. You all will never be the same.
Sorry about all that candy that you won’t be able to eat, left in the pastel-colored Easter basket and thrown away while you will be at Joslin Clinic. It’s a big bummer to be diagnosed the day after Easter. I’ll let you in on a secret: years from now, you will enjoy chocolate and candy in small quantities. Not that sugar-free crap that is a waste of carbohydrates and only makes your stomach sound like a garbage disposal, but the good stuff. You know what I’m talking about.
It’s going to be rough for a while. You and your parents are on the steepest learning curve that you’ll ever experience. There’s an expression: “Drinking from a firehose…” and you’ll have your lips wrapped around it for a good, long time. You, Mom, and Dad will sit in classes with other shell-shocked patients and parents, wondering if the universe will collapse under the weight of all that knowledge.
Eventually, you’ll get into the swing of things, and it will feel like everything is almost back to normal, except for the shots and the testing and the measuring and weighing of every.tiny.morsel.of.food. I’m telling you now: It’s not. It’s not normal, and even thirty years from now, it’s not. But I am here to tell you that it’s better.
Here are the most important things you should know:
- That lady you will meet early on in the patient lobby at Joslin Clinic with the backpack thingy? It’s called an insulin pump. It gives you freedom: to eat when you want, sleep in, take extra insulin when you need it and less when you don’t. They get a lot smaller over the next 30 years, and you will wonder how you ever lived without it. You waited until 1999 to get one, but it will be worth it.
- People who give you that pitying look or tell you horrific stories about someone they know with diabetes? You will quickly school them, but be nice about it. Smile when you tell them the difference between Type 1 and Type 2 diabetes (Or whatever we called it back then, because the names keep changing…) and that you know a lot of people who are healthy with this disease. Smile even though you want to kick them in the teeth.
- You will diagnose four people in the next thirty years, because they came to you asking questions about their symptoms. (Sorry, you are not a doctor. Remember that fear of needles and blood? Never goes away.) They came to you because you eventually were not afraid to tell the world you had diabetes. There will be a time in your teens when you want to keep it a secret. There will be a time when you lie about your blood sugars to your parents and your doctors. You will regret that later. You will also regret a lot of other things, including that one night… Oh, never mind. You’ll find out.
- Food will be an issue for you. Remember how much you like pizza and bagels? They are not your friends. (Neither is tequila.) I’m warning you now, but you won’t heed most of this. Thirty years later, you will still try to keep your blood sugars in range when you eat these, but you still haven’t figured it out yet. (Although we are getting close. Dual wave bolus. Yeah, you have no idea what I mean, but that’s O.K.)
- Complications will happen to you, but you will consider yourself lucky that they are ones that are “fixable”. You will also consider yourself invincible for a while, which is perhaps why the complications developed in the first place. You will feel guilty for what you did - and didn’t do - and you will hate yourself. Please. Love yourself. We have one body and I’m now trying to love it as much as possible for the rest of our long (crossing fingers) life.
- Why? Because someday (And I’m not telling you when, because there has to be some mystery…), you will meet a funny, sweet, and sexy man who thinks that you are also funny, sweet, and sexy. And he doesn’t care that you have a chronic illness. He will stick by you when you are sick and watch over you when you are low. (OK, I’ll give you a hint. It’s not that guy you currently have a crush on. He becomes a loser who used steroids and shrunk his testes. Eeww.) (Second hint: It’s not Michael J. Fox. He’s still hot, but he’s got his own health issues these days.)
- Diabetes technology will get better, but you won’t think it’s fast enough. Lancets hurt for a long time, needles don’t get shorter for years, and some technology downright fails. (Avoid the Glucowatch. I know it looks like a fabulous solution and you will cry when they announce it. You will also cry after you realize it’s burning your skin.) But, things will improve, and even now, I see great things on the horizon.
- Unfortunately, one of things I don’t see on the horizon is a cure. When someone tells you a cure is only “five to ten years away…”, just nod. You will believe this for five years. You will believe this for ten years. You will stop believing, but you will never stop hoping. And that’s what will keep millions of us going in our darkest hours. Hope.
- You don’t know any other diabetics right now. You’ll meet some at Joslin, but you won’t get close to anyone. There are camps, but your parents want you to not feel different, so they’ll send you to camps with healthy kids. To this day, I have no idea how you survived - and I’m talking about the bugs. You hate them. You still do.
- But one day, you will know a lot of them. You will meet them via computer (Not the one Dad uses for work in the basement that you play Zork and Adventure on and create simple Basic programs…). You will meet them in person. They will welcome you into their homes and their lives. You will laugh with them and cry with them. You will share your deepest fears and they will not placate you or blow you off, because they will have the same fears. They will become part of your family. Embrace that. I wish I could have found them sooner.
Thirty years from now, you will sit in front of a computer, staring out into a rainy afternoon, grateful to be who you are and wishing you could have heard all this after your first insulin injection in the ER. I’m not sure it would have helped, but it couldn’t have hurt.
And the one thing I really wish you knew back then?
That class 30 years ago that you took at Joslin, where they told you someday you could have a successful pregnancy?
They were right.
All my love,
April 4, 2020