Usually Type 1 Diabetes presents earlier in life. I was 23 when I was diagnosed. A year out of college, newly married, a new homeowner. Diabetes was not on my agenda. It was surprising.
I was feeling not entirely well, I was losing some weight, very thirsty. The symptoms were alarming enough to get me to a doctor. He drew some blood and told me he’d touch base in a few days, but by the time I got back to my desk at work, he was calling saying that I needed to go the hospital right away.
I checked into the hospital a naïve, relatively worry free 23 year old, and two days later, I left as a Type 1 diabetic.
I had lived 23 years a certain way, and those 23 years of experiences shaped what I thought was normal. Now, having this disease just show up out-of-the-blue, 23 years into my life, in an instant, my idea of normal had to change. I had no other choice.
It was a lot to wrap my head around at first. It was complicated in the beginning. I had to be hyper-aware of sugar intake and balance that with my activity level and my insulin and meal schedule. It was all very precise in those days, not a lot of room for error.
My blood sugar can drop quickly and that would sometimes happen at times I was stuck. I was newly in the workforce, just a year out of college, and I’d be sitting in a meeting at work and all of a sudden I’d start sweating and noticing the insulin push my blood sugar down. When that would happen, I would often push it as long as I could and hope it wouldn’t turn into a problem before I could resolve it in privacy. I didn’t want to be a burden to anyone else.
My wife learned to see the signs quickly. Often, before I would notice, she’d encourage me to check my blood sugar. 9 times out of ten she was right, my blood sugar was low. I hated that she had to worry about that. I didn’t want her to have that burden.
Now, having lived with it for 20 plus years, that awareness is just part of our daily lives. We found a new normal.
“In an instant, my idea of normal had to change. I had no other choice.”
All in all, I’d say day to day, having to manage my type 1 diabetes doesn’t hinder my quality of life. I’m happy. I’m still active. I have a good life. I try not to dwell on the “work” of diabetes.
But, the potential long-term effects of diabetes is always on my mind. Thankfully, with a very tight routine, I have managed to keep my blood sugar levels under control for the most part.
I am very fortunate, in that the physician who first ran my blood tests all those years ago, is still my physician to this day. He’s very consistent with how he stays on top of my regimen, with quarterly wellness checks and blood panels twice a year.
He’s been very vigilant and has instilled that vigilance in me. He genuinely cares for my well being. That’s pretty rare these days.
I think my wife and my kids would say that the more immediate impact of this disease is a constant worry. I don’t always notice when my blood sugar starts to drop. It can turn into an emergency pretty quickly.
A few years ago, I was out-and-about, solo with my kids and my blood sugar went dangerously low, suddenly and without any change of routine. My body just started reacting differently to the particular insulin I was taking. Thankfully, my oldest called my wife and she was able to track us down, using the Find my iPhone feature, and get an ambulance out to us.
The next day I called my doctor and started the process of getting a continuous blood glucose monitor approved through insurance. I had heavily resisted getting a continuous monitor, because I didn’t like the idea of having a device constantly attached to my body, but it was for the good of everyone.
It stays attached to my arm 24-7 and I’m notified of my sugar levels through my phone. It brought us all peace of mind.
“My doctor has been very vigilant and has instilled that vigilance in me.
He genuinely cares for my well being. That’s pretty rare these days.”
I think most people don’t really understand Type 1 Diabetes.
Recently we were at a beer garden and we were standing around waiting for our food and there were these two guys around my age cracking a typical joke about consumption and diabetes and blood sugar. I just happened to overhear and was in the mood, so I said “oh that’s funny, I am a Type 1 diabetic, so I actually do have to worry about my blood sugar.” They clammed up pretty quickly. I probably ruined their good time.
I do have a sense of humor about it though. My wife and I regularly pronounce it “Diabeetus” thanks to that old Wilfred Brimley commercial. There’s also this Parks and Rec episode where Chris Traeger jumps into screen with an air punch, emphatically shouting “Diabetes!!! Fight it!!!”
It’s hard not to laugh. But in the end, these jokes just perpetuate the misunderstanding.
Recently there was a Congressman [read: Matt Gaetz] that suggested something along the lines of “oh, well, we don’t have to put a cap on insulin prices, we just need to have people eat better and be more fit.”
That would not solve a thing for me. I would still need insulin. My pancreas has decided to no longer produce insulin, or very little. I exercise every day, I eat relatively well and I am still and always will be a Type 1 diabetic.
They either don’t get it, or just don’t care to, trying to allow the drug companies to keep making as much as they can possibly make, and physicians to make as much as they can possibly make, and insurance companies to make as much as they can possibly make.
Diabetics just seem to be expendable here.
“I exercise every day, I eat relatively well and I am still and always will be a Type 1 diabetic.”
It’s very expensive to be a Type 1 Diabetic in America. Insulin should not be a luxury.
Congress needs to do the right thing and put the limits in place. It’s great to see this has been addressed recently by President Biden and some of the drug companies. But it’s still a problem.
My out of pocket cost for insulin has depended entirely on the employer-sponsored insurance plan I have at the time. I’ve worked for a few different companies since being diagnosed 20 plus years ago and each insurance plan has varied wildly. Some have been very good where the cost of insulin is not intrusive, and others have been nowhere near as good, and until limits are reached or deductibles are met, it’s been more than $1000 for a three-month supply of insulin.
I’m fortunate in that I have been able to pay for insulin out of pocket when I needed to. I know many other people are not as fortunate. I hear stories of people having to ration insulin because they can’t afford to pay for it when the insurance company doesn’t cover it or they don’t have insurance at all. It’s unreal!
Managing my diabetes with the necessary insulin, and the care from my doctor, has produced very good results over the years. If I was forced to manage it differently, not having the ability to pay for insulin, that flies in the face of what that Congressman had implied, that people just need to take better care of themselves.
That’s what insulin does for Diabetics. It keeps us healthy. It prevents long-term health problems that impact your heart, kidneys, liver, nerves. People who are living with diabetes are not able to do their best, or take care of themselves without access to insulin and regular doctor check ups.
My life literally depends on insulin and regular care from a physician.
I have a good life, I want to stick around as long as I can.
“People who are living with diabetes are not able to do their best, or take care of themselves without access to insulin and regular doctor check ups.”
A Note from NHU:
Shortly after completing this interview our interviewee started a new position with a new insurance provider. Per the usual, insulin coverage via employee sponsored health plans is always a game of hide and seek.
In this case, just one type of insulin used (he uses two types) would have cost $900 for a three month supply via his new insurance provider. After some digging, and some help from a pharmacist, this is what he discovered (spoiler alert, it’s a needle in a haystack search that shouldn’t have to happen in the first place.):
“Often, the pharmaceutical companies offer discounts that a user can enroll in. It’s not really a broad program. The discounts are not just given. The insulin user has to find them online and enroll for a “discount card.” There is no cost to the patient, and this gives a code that the pharmacy can apply when filing the Rx, providing a discount.
Because of some of the newer things happening with insulin (lower costs for Seniors via Medicare = bad press regarding high costs for everyone else) the makers have these cards to give discounts. One of mine went from roughly $900 for a 3 month supply to $99 for the same amount (which still isn’t feasible for people on a fixed income).
The pen needles are a whole other thing. Those would cost $270 for a three month supply and I have not been able to find a discount for those. An Endocrinologist I saw recently suggested going specifically to Walmart because they have generic versions of the pen needles for a fraction of the cost. I was going to check that out and see if it pans out.”
This is the life of a diabetic in America; scrounging around for affordable insulin that literally keeps them alive. How does that make you feel?
New Horizons Un-Limited 