TMI re T1D
My wake up call was actually an email.
At the age of 29 I was diagnosed with diabetes. Latent autoimmune diabetes in adults, managed as type 1, to be precise.
No family history. No real warning. Just an email at 6:36 on a Tuesday morning.
Subject: Urgent lab results
Good Morning
Unfortunately you have diabetes and your blood sugars are so high that your health is not good and at risk.
Can you come in to discuss this today? Would 1:30 PM work for you?
Rob
Unfortunately you have diabetes.
…say what?
Subject: RE: Urgent lab results
Yes, I’ll be there at 1:30 PM.
Ken
Preface
I hope that writing about my experience can act as a kind of coping mechanism. will help me better understand how I have changed — physically, mentally, and emotionally. I’ve been drafting this on-and-off over the past few years. At first I’d only get a few thoughts out before I am overwhelmed by emotions. On the bus on my morning commute. On the plane ride back from a conference. In bed late at night when I can’t sleep.
This won’t be a sob story (even though I sobbed uncontrollably at times while writing the first draft). It’s a story of success.
One day I’d like to share this story to a wider audience. But my brain forms a thought or recalls an experience, and I visualize standing in front of a crowd saying that thought and, boom, I’m gut-punched by my emotions.
I hope, too, that someone with a new diagnosis could read this and think, “I’m not doing anything wrong, I can still achieve my professional goals, things will be okay.”
This is also a chance for me to practice and build a habit of writing. It’s much easier to write what you know — what is extremely personal — than it is to assume expertise or authority.
Feeling bad
I was always tired. Easily fatigued. I used to work on first and Virginia. Sometimes I would walk down to Pike Place Market for lunch. Walking back up the hill would leave me tired, gasping for air. I would get home, and when we would usually spend time together, going to the dog park, watching an episode of a TV show… I could barely stay awake and would fall asleep on the couch.
I was thirsty a lot. Insatiable thirst. I would get this urge to drink and just chug a glass of water, fill it up again, chug it, fill it, chug it.
This happened a lot at night too. Which made the late night trips to the bathroom make sense. I would wake up in the middle of the night and have to pee, a lot. Then I would chug more water, straight from the faucet, go back to bed. Wake up, do it again. Three or four times a night. I remember it felt like sleepwalking, like I was on auto-pilot.
That went on for a few weeks before I decided I should get a check up.
Between the fatigue and the thirst and all, I was probably experiencing symptoms for 8–12 weeks before doing anything about it.
Getting help
At the time, I didn’t have a doctor—a primary care provider, someone I see regularly. When I get a cold or feel like I have the flu, I don’t go to the doctor. I don’t know how many people my age are the same way, but my guess is quite a few.
I had also built up a distrust of doctors. I’m not against science or medicine, not an anti-vaxxxer — I had just never had a good experience with a doctor. They’ve always seemed impatient or not thorough enough or quick to judge… When I was a young adult I was treated as a child. So that didn’t help.
All that made getting help difficult, just another hurdle.
I had to find a doctor in order to get help. Analysis paralysis. And how the hell am I supposed to know which doctor is covered by my insurance? Websites that aggregate sparse or empty profiles of doctors are not helpful, and how do you know if they’re accurate or up to date? Why the hell would you build, let alone promote, a review feature for your website if 98% of the people have zero reviews. Zero stars.
I used Zocdoc because I remember reading about their logo design on a design blog. The app was user friendly, they prioritized insurance as a way of filtering providers…
That’s how I found my doctor and was able to schedule an appointment.
The first visit was brief, casual, on a Monday. He drew some blood, felt my neck. I told him my symptoms. I asked if it could be some kind of anemia. He told me if I googled my symptoms that I would see diabetes. I must have nodded or kept a poker face because I just didn’t think that could be the case. This was something within my control that I could correct.
He had me step on the scale, something I don’t do regularly. I had lost a lot of weight. At least 20 pounds. That was a surprise, and concerning. For Sarah, that may have been the hardest part; that I had changed so drasticaly, basically deteriorating right in front of her, undetected.
The doctor taught me how to inject myself, had me do a test run with this weird hunk of rubber. But it was all so matter of fact. Like, this is your life now, and you need to learn how to put a needle into your stomach. No easing into it. Just, here you go.
What do I do?
I’m lucky that there are a lot of times when I don’t think about it. There are also times when I forget. Forget I have this disease. It’s not a conscious feeling. More like negative space, or that moment between inhaling and exhaling. Usually I remember because I realize I forgot something. Forgot I had to do an injection before going to sleep. Forgot to do a reading of my blood sugar, so I can have the data.
You’re supposed to inject the needles into the fatty part of your stomach. Either your love handles or the area around your bellybutton (but not too close). Its awkward for me to reach across and stab myself in the side, so I focus on the space around my bellybutton. I’m always running out of room. I often have faint bruises. It hurts to put the needle too close to a bruise.
I go through this thought process three to six times a day. When it’s easy it’s fine. When it hurts it sucks. My wife used to tell me I would never be able to get a tattoo because I don’t do well with small pain. Maybe she’s right, because I hate when the needle hurts.
Changing diet
Diet is important. It’s sad that it takes coming down with a chronic disease to really learn about nutrition and how your body reacts to different foods. I learned more about my health in three hours of diabetic nutrition classes than I did in 12 years of grade school.
So I know more about how carbs and fats balance out.
I still eat pizza and cheeseburgers. I do better about portion control… that’s big. “Everything in moderation” is no joke.
I check the nutrition label on everything now. I look for carbohydrates first and serving size second. I don’t count calories (yet). It’s amazing to me how much sugar is in everything we eat, and at how much sugar is in really sweet stuff… and then I think about my diet before. It wasn’t horrible, but still, we’re training our bodies to crave sugar. It’s one thing to see it on a PSA, it’s another thing to feel it.
Early on traveling was a pain. If you want to go on a two week trip, pack ahead.
CGMs, Freestyle Libre, Dexcom G6
Put it in the wrong spot and it’s gonna hurt or be uncomfortable. You can feel it get caught on a shirt or door or jacket… and that feels weird.
I consider myself lucky that I’ve never had to prick my finger as the primary way to track my blood sugar.
How does it make you feel?
Early on, my levels would swing a lot. I would go low, feel light headed with a pit in my stomach. Have to eat some glucose tablets, which are like big smarties. Made yard work difficult.
It could be in my head, but one side effect of one of the prescriptions is appetite suppressant. I feel like I always have a blank space in my stomach, never really feel too hungry.
Other than that, you feel normal. Until you don’t.
Fearing the future
The hardest part might be thinking about the future, aging with the disease. Time was I could hope to roll the dice… maybe I’ll live well into my 80s without serious health issues. But now it’s just a fact that I will have higher risks of, well, everything.
And in some ways I got a preview of what that might be like. To all of a sudden find yourself feeling different and unwell and to have it be something serious and something deadly. The next time that happens to me (and the pessimist in me knows there will be a next time) it’ll turn out to be kidney failure or something really bad.
While I didn’t have a family history before, I certainly do now. Should I choose to have children, I will pass on a higher risk to them.
Any child we have, biological or otherwise, will be extremely fortunate. We’ll spoil the shit out of them and teach them to be a good human, and they’ll have a big family that will love and support them unconditionally. Which is why it is scary to think about introducing any risk of life-long hardship to them. Let alone risk of a genetically inherited chronic disease, to deal with from a young age, in a society that is increasingly cruel and devoid of compassion to those who are different, in a dysfunctional system of healthcare that prioritizes profits over people. There’s a 1 in 17 chance of passing it on.
If I am being optimistic, then this diagnosis is a constant reminder to make good decisions, to learn what truly matters to me, and to let go of what doesn’t. And to enjoy time I spend with friends and family. Getting out of my own way is not easy, but life is short.