In the second day of HAWMC,
my true love gave to me… I’m supposed to: tell you a little about my “condition” and five things I would want someone to know about it, as well as some links that would help those who are newly diagnosed.
Before I talk about my condition, let me introduce myself if you’ve never read my blog before.
My name is Christel and I’m a wife, mother, sister, daughter, friend, early adopter of the podcasting world, traveler, polyglot, lover of Diet Coke with Splenda, lollygagger, instigator, conspirator, giggler, and rabble rouser.
I am also a Type 1 diabetic, celebrating 30 years of living with it (This week, in fact.) and having a life (Sometimes in spite of it.).
There are way more than five things that I’d like you to know about Type 1 diabetes, but you don’t have time for a 4 hour Powerpoint presentation, do you? (If you do, contact me. I’ll make you a cup of coffee and we can chat. And chat. And chat even faster when the caffeine kicks in.)
Here’s my five:
1. Type 1 diabetics are an expensive group of people. (But we’re very worth it.)
Diabetes is gut-wrenchingly costly. There are no generics when it comes to the one thing we can’t live without: insulin. A single vial of Humalog, which doesn’t even last a full month for me, is $148 with my current insurance policy before the $4K deductible (which is crappy, but that’s for another rant-filled post for another day.) There are other expensive supplies I use to manage my diabetes, but I’ll get to that later*. So, when I belly up to the pharmacy counter, I hand them $296 every month. If I don’t, I’m dead. Really. As a doornail. Or a duck. (I can visualize a duck being dead, but having trouble with the doornail.) But dead, none the less. Which leads me to point number…
2. We can die at the drop of a hat. (Ooohh, sorry to be so morbid so quickly, but that’s the way I roll.)
Or the drop of a blood sugar level. The intricate daily balance we do, keeping our blood sugars inside a target range can have unforeseen consequences. For those seeking “intensive control” regimens, it’s not uncommon to have low blood sugars in the 40’s (the normal range is between 70 and 110, according to my endo.) or even lower (My all time low? 27. I was still conscious, but not verbal.). Go too low and you fall unconscious. Without outside intervention, we (I’d say simply, but there is nothing simple about it.) just don’t wake up. And that scares the hell out of most of us.
Of course, go too high and it’s a different physical reaction, but the same outcome. High blood sugars signal a lack of insulin in the body. Insulin is what’s needed to bring the glucose that swims (the backstroke, if you must know) in our bloodstream, to cells where it’s used as energy or stored as fat. Think of insulin as a life raft. (And it is.) Too few life rafts and the cells can’t get energy, so it burns fat, releasing a nasty little toxin called ketonic acid in the process. Too much of that coupled with high blood sugars sends us into diabetic ketoacidosis (DKA). Without outside intervention, we…this is sounding like a broken record, isn’t it… just don’t wake up. And that also scares the hell out of most of us.
3. We have an invisible disease, but that doesn’t stop us from being discriminated against.
If you met me on the street, you wouldn’t know I had a chronic illness, unless my continuous glucose monitor (CGM) and/or my insulin pump were clipped to my belt. You may even know me in passing or have hung out with me a few times, but never knew I was one of those “five-percenters” (Type 1’s are only five percent of the whole make-up of the diabetes population. An exclusive club that no one wants to be in.). However, the minute I have a hypoglycemic episode or sit down to eat, you know that I’m different. And in some cases, that means discrimination.
Friends have been harassed at TSA checkpoints by agents, despite clear guidelines set by the TSA about insulin pumps. Schools try (and sometimes win) to get Type 1 children moved to a different school so they don’t have to deal with them – or parents being told that they just can’t send their child to public school at all and either homeschool them or send them to a private school. A nursing student was recently denied her clinic practicum because she had a severe hypoglycemic episode and the school was “uncomfortable”.
We can’t be commercial air pilots. Join the armed forces. Easily scuba dive. Easily drive a tractor-trailer. In some cases, drive at all.
We aren’t contagious. We don’t bite (Um. Well, most of us don’t.). We may be a little more high maintenance than the rest of you, but we are people, too. And we can fight for our rights and often do…
4. We are lucky. (Lucky? Are you kidding me? Wait…)
If I was born less than a hundred years ago, I wouldn’t be writing this blog post. (The fact that the Internet hadn’t been invented by Al Gore yet is beside the point.)
Without the discovery of injectible insulin, no Type 1 diabetic would last very long. We’re lucky to live now, in an age when we have ways to treat and manage our disease. When I became a Type 1 diabetic back in 1983, there was already glucose meters and insulin pumps. They weren’t small and technologically advanced as they are today, but we had the tools to fine tune. And it’s only gotten better.
Now, I have a continuous glucose monitor (CGM) that gives me a glucose reading every few minutes for up to seven days. I have an insulin pump that is the size of a pager (Shout out to the eighties and Aquanet, too!) and supplies me with the insulin I need in the amounts I want. Look, it’s not perfect. We have a long way to go, especially when we’re looking at a cure, but right now? I’m not complaining. (At least not about that.) We’ve come a long way.
But best of all, I have the DOC. And that brings me to my number five…
5. The Diabetic Online Community (DOC) is, without a doubt, the best thing that ever happened to my diabetes.
Let me tell you a quick story.
Once upon a time, there was a Type 1 diabetic who felt pretty down, struggling, and alone. Then that Type 1 diabetic found another Type 1 diabetic, then another, and another… That’s the story that most of the DOC can share. We look to other diabetics for support, validation, and help. Once a small rag-tag group that felt like we were yelling into the wind, the DOC now keeps growing as more and more of us find that we need the emotional support of other Type 1s just as much as we need our medical teams. Back in 2005, when I started diabeticfeed, the first podcast dedicated to diabetes and diabetes research (may it rest in peace), there wasn’t a lot of ways to connect. That’s how I started to connect. Without the DOC and their virtual handholding, I wouldn’t have made some important decisions that have changed my life. And now I am giving back through this blog, sharing my thoughts about living with Type 1 diabetes.
And now, for something completely different. ::snicker::
My list of good resources for the newly diagnosed:
Joslin Clinic – Info for the Newly Diagnosed (This is where I went after my diagnosis. One of the top diabetes centers in the world.)
Children With Diabetes Forum (Parents who have answers to all the questions about Type 1 because they’re living with it.)
Six Until Me (Kerri is a gateway drug. Just go to the site and you’ll see what I mean.)
Tudiabetes.org (If you’re an adult or a teen, this is a great community to join and get answers…)
There are so many more, but for now…I’m off to live my life. With Type 1 diabetes.
* So, here’s the later. This is a monthly cost of my diabetes life:
2 vials of insulin = $296
Pump reservoirs and insertion sets = $200
CGM sensors (4 of them is one month) = $304
Glucose test strips (I use 200+ per month) = $243
Low blood sugar glucose gels/tablets/unexpected stops to get fast acting sugar = $20
That’s $1063 per month (at minimum…) until I reach my deductible. Let’s just say we’re making financial choices that make me cry, because if it wasn’t for this disease, we’d have a lot of extra money for daily living.
I’m supposed to see my endo every three months, but I’ll throw it in so you can see this…a single appointment with my endocrinologist and labs: $960 Just throwin’ that little cost in for kicks. Except it’s not that funny to me. At all.