I’m turning 30. Well, sort of. Again. On May 11, 2011 I will officially have had Type 1 diabetes and a busted pancreas for three decades. In all my years with this stupid disease, I’ve never celebrated my diabetes anniversary, so I’m making my inaugural celebration a hootenanny.
I could wait until May 11 to celebrate, maybe have a cupcake, create a piece of art, or eat an entire pizza by myself to give diabetes the proverbial pricked middle finger, but I’ve decided to start celebrating a little early. I’ve made it 30 years with diabetes, so I figure I might as well take a month to celebrate it. After all, 30 years of living with diabetes every single day is kind of a big deal. Even one year of living with diabetes every single day is a big deal.
On April 16, I kicked off the first event for my 30th Diaversary celebration by doing something that most people would never consider doing, but that I’ve dreamed of doing for years.
The day started like any other. That is to say, “It was a dark and stormy night…”
I got up early due to thunderstorms in the area, plus I was too excited to sleep anyway. I took care of the dog and cat, went through our morning routines, then met up with A-Flizzle and a couple of friends for the half hour long drive to a semi-deserted air field in rural north Florida. We might have also stopped at Starbucks so that somebody wouldn’t be cranky because he hadn’t had his morning coffee. Coffee is up there with such necessities as insulin and glucose tabs in my world. We all have our vices.
Fortunately the weather cleared and we arrived at our destination, where the nervousness that I had before was replaced with the excitement of the adventure that I was about to go on.
To kick off the celebration of my first ever and 30th Diaversary (and thanks to A-Flizzle for getting it for me for Christmas!), I was going to jump out of a perfectly good airplane at the School of Human Flight. (Feel free to draw your own parallels between skydiving and living with diabetes.)
First, my buddy and I had to watch a training video. The video, circa 1985, starred a short little attorney guy with a beard down to his belly who was an avid skydiver and needed about fifteen minutes to basically tell us that we were taking our lives into our own hands. I do that everyday with diabetes, so not a big deal to me. Skydiving Rumpelstiltskin at Law also shared that they wouldn’t be held liable if we plummeted to our deaths. Considering that I’d probably be more concerned about the ground than anyone’s liability if that were to happen, I took that for what it was worth and signed my life away so that I could get to the fun parts of my adventure.
So next we got on-the-ground training from our skydiving instructor. He was a cool guy, with angel wings tattooed on his back, long blonde hair, and A-Flizzle said that he reminded her of Patrick Swayze in Point Break. All I could really think after that comment was, “You mean that dude from the pottery scene in Ghost is going to be strapped to the back of me while skydiving?!” Fortunately, instructor dude was way cool, and even though he had jumped out of an airplane so many times that he had lost count, he was just as excited about my first jump as I was.
Then we came to the part where we had to put on the jump harness, also known as the apparatus that makes sure I stay securely attached to the instructor who has the parachute while gravity is pulling us toward the earth at 120 miles per hour.
All straps were securely fastened, and everything was tightened to the point of cutting off circulation. My chariot awaited…
Now let me tell you, there is absolutely nothing that feels anything remotely close to natural about jumping out of an airplane when you can look out the window of it and see clouds. When the pilot opens the cockpit door, and the cold wind hits you in the face with a hurricane’s force, and the instructor who you hope is securely attached to your harness tells you to step out onto the 12 inch jump platform on the plane’s wheel well, it defies every single instinct you have not to hold on for dear life. You take a deep breath. You find this eerie sense of calm inside where there is no room for panic. You hear the instructor count down “Ready, set, …” And then you jump, and you see the plane fall away into the sky, and you fly.
Skydiving is the single most exhilarating thing that I have ever done. I can’t wait to go again, and I’m now toying with the idea of getting certified so that I can eventually jump on my own, without an instructor. It takes 25 jumps to get there, so I have a long way to go. However, I’ve conquered three entire decades of diabetes, living a daily life of highs, lows, finger sticks and needle pricks. What’s 24 more jumps out of an airplane?
I’m living proof that if you work hard enough, are just stubborn enough, and absolutely refuse to never give up, there really isn’t anything that you can’t do in this world. Just remember to have fun while you’re doing it!
With the exception of maybe an insulin pump on our hip, to look at most of us, you would never know that we have diabetes. We may be standing right in front of you, and you may have known us for years, yet barring some extreme circumstance you will only know that diabetes is a part of our life if we choose to share that with you. Let me introduce you to the dumbest secret ever.
Being an advocate for people with diabetes, and increased awareness and understanding of what life is really like with this disease, I’ve become quite outspoken about diabetes. I’ve become outspoken about my own diabetes. I’m proud of our amazing Diabetes Online Community (DOC), and the contributions we make to ultimately improve lives with diabetes, and am honored to be just one of the voices in that chorus.
I get bothered though, because I know we all still try to keep diabetes secret sometimes. We don’t like to bring attention to ourselves in a time of need, show what we often (and mistakenly) translate as being weakness, and have to admit to ourselves that we actually need someone else to help us take care of us, if only for a few moments. I recently wrote about a low at work, and if I hadn’t had low brain and was more comfortable with turning on the billboard with all the flashing lights on it that says, “Diabetes alert, I need a little help please!” then I might could have avoided hours of feeling like my behavior made about as much sense as a Charlie Sheen interview.
I don’t think any of us were taught to share our diabetes like that. Our interactions with people and our condition made aspects of our situation become taboo. Yes, we know that when we feel low we should treat first and ask questions later. But in a world of structure, especially for children with diabetes who have a specific snack time, lunch time, this time and that time, it draws unwanted attention to us when we have to sneak to the back of the room or go to the nurse’s office because our blood sugar is low. Not all people understand that. Not all people with diabetes even understand that. Having to break routine seems like no big deal to the mom & dad of the child with diabetes, because they know how important it is that Junior gets his blood sugar level up before something stupid happens. But they don’t know what Junior has to deal with, the looks he gets from his friends, the questions about where he went and why he gets to have a snack when nobody else does, the lack of being able to explain why he gets special treatment in a way that his peers can accept. To us adults, those are easy questions to answer; to Junior, answering those questions risks not being accepted, and becoming (Heaven forbid!) different.
I lived with diabetes all through those grade school days, and still I don’t know what the solution to this problem is. The only thing I know for certain is that it taught me behavior that I wish I had never learned. We should never, ever feel like we have to hide our diabetes and needs. Yet we do hide it, and that requires us to make a conscious choice to act against instinct when what little bit of clear thinking remaining is what we need to save ourselves from a low blood sugar disaster.
Being diagnosed with diabetes, regardless of type, requires us to retrain ourselves. There are things that we formerly took for granted that we cannot ignore anymore. The more I talk about diabetes to people around me, the more comfortable I get with the idea of sharing what my diabetes needs are. Whatever it takes to get to what we need, we have to remove the barriers, even if those barriers are us.
Today was a day of rewards, a chance to recharge my batteries, and a disconnect from the ever present list of things that need to be done.
The #HAWMC blog post challenge for today is an unstructured “Health Activist Choice.” I’m good with lack of structure. I like being left to my own devices and given free reign to figure things out on my own. It may not be necessarily what I’m supposed to be figuring out, but a little freedom to wander and wonder appeals to the adventurer in me, and I always end up somewhere interesting.
My day today was a lot like that. I got to sleep in a bit, which was nice (and unusual). Having the option to sleep in is one thing that I can appreciate about having an insulin pump. Back in my multiple daily injections (MDI) days, I can remember absolutely HAVING to get up so that I could take my morning insulin dose. It’s nice having options, and something I try to never take for granted.
I got some fun things in the mail that I had ordered, which I wasn’t expecting until next week sometime. Squirt the Cat especially enjoyed giving the package a proper inspecting, and enjoying the delightful smells that it must have picked up along its travels from wherever it came from to our house.
Inside were new shorts for summer, which included (free of charge) just a touch of disappointment. Having shifted to a low carb eating lifestyle, I’ve lost a touch more than ten pounds so far, and the shorts I ordered were just slightly too big. Amazing the difference a week makes, back when I ordered the correct size. Oh well, shrink & be merry.
As I’m losing weight and eating low carb, I don’t need as much insulin to keep things level. I’ve decreased my basal rates overall by about 5-10% so far to keep from running too low. Also to prevent over or under correcting for meals, I have to be more accurate in my SWAG (Scientific Wild Ass Guess) bolusing, and estimate the amount of carbs as closely as possible. I’m not following Dr. Bernstein‘s diet specifically (and I admit, I haven’t even finished reading his book yet), but eating low carb definitely agrees with my diabetes. At least, it agrees with my not having post-meal BG spikes, which is great since I hate being high. I’m continuing to make slight adjustments to ward off the lows, so that’s still a work in progress. But honestly, what isn’t a work in progress with diabetes?
The rest of the day I spent with friends watching baseball. Even though both of my teams lost, I still had a great time.
Today reminded me that we need a day every once in awhile (more often if you can get it) to do some things we enjoy. If that is sleeping in, shopping for shorts that sort of fit if you tighten the belt enough, or going to baseball games, it’s important to unplug from all the daily stresses (even diabetes) for a few moments.
I’m already looking forward to next Saturday, when my adventure continues…
I have questions about it every single day. People without it have questions. People who are new to it have questions. Parents of children with it have questions. Everybody wants to know…what’s up with diabetes?
The #HAWMC blog post challenge for today is to “write a poem where every line is a health question.” Because diabetes often has no rhyme or reason, I figure my poem full of questions should be somewhat similar in lack of sense. I tried to put myself in the shoes of someone new to diabetes, and all the questions that must come with being diagnosed, whether you are an independent adult, a parent, or even a child. So here goes…
What is this thing called diabetes?
And what is with all of these Types?
My doctor says I should be grateful, but why do I still want to gripe?
What is the deal with these numbers?
And what do they all really mean?
I log all this data for everything, but why am I sucking at winning?
Why are my hands so shaky?
And why do I feel awfully drab?
I’m learning that this is low blood sugar, so where are my glucose tabs?!
Why am I peeing near constant?
And why do my thoughts feel like they’re in Jell-O?
If this is what high really feels like, can I just tell it to go on to hell-o?
Does anyone ever get the hang of this?
And will it haunt me the rest of my life?
Or will I be able to do everything I’ve ever dreamed of still…maybe even do it twice?
Today is one of those days that I suck at diabetes. I woke up this morning in a complete fog because of an early morning low. My work was calling wondering where I was, and I vaguely remember talking to my boss and telling her, “Oh crap, I’ll be there as fast as I can.” Fortunately, she’s understanding. A few glucose tabs, a clean shirt and a necktie later, I made it. The rest of the day has been spent trying not to be angry at myself about it.
Today’s #HAWMC blog post challenge is to “leave your health a text or voicemail.” Since I spend all of my money on diabetes supplies, my health is apparently too cheap to pay for voicemail, much less text messaging. I’m just going to have to send it a message in Morse code.
-.. . .- .-. / -.. .. .- -… . – . … .-.-.- / -.– — ..- / … ..- -.-. -.- –..– / .- -. -.. / .. .—-. — / – .. .-. . -.. / — ..-. / -.-. .-.. . .- -. .. -. –. / ..- .–. / -.– — ..- .-. / — . … … / – — -.. .- -.– .-.-.- / … – .-. .- .. –. …. – . -. / ..- .–. / .- -. -.. / ..-. .-.. -.– / .-. .. –. …. – .-.-.-
The term “intimacy” is something usually reserved for romantic situations, emotions and secrets best shared in the dark, by candlelight, maybe with Barry White or Marvin Gaye lending their vocal stylings to the mood, and cookies on the nightstand…you know, just in case of a low. However, when I give myself a chance to examine what and why I share about my life with diabetes, I realize that “intimacy” is the perfect word for it.
The #HAWMC blog post challenge for today asks bloggers to reflect on “why you write about your health.” I write to advocate for people with diabetes, for better treatments, and increased awareness. I write to encourage, to show that a positive outlook and an amazing life is still possible even with a death defying disease.
As much passion as I have for other PWD’s living their lives to the absolute fullest, I also write for me. For 28 years I lived my life quietly with diabetes, only really broadcasting it in very close circles of friends and family. Many people who knew me my entire life never knew that I had diabetes.
For the most part with my diabetes, I kept the intricacies of what I feel, experience, get frustrated with, and celebrate to myself. Several years ago while on a bike ride I got the idea for Diabetically Speaking, but it never really got the support to grow much bigger than just an idea; or maybe I was the one that didn’t get the support. Last year, with the encouragement from A-Flizzle and maybe my own desire to finally accept my life with diabetes, I broke through my diabetic wall. I couldn’t take being alone with it anymore. I needed to let my world with diabetes out of the box, out of its cage, out of the proverbial diabetes closet.
I began by following other people with diabetes on Twitter. That was the first time in my life that I really started interacting and sharing intimate details of my life with other people who deal with the same things that I do every single day, who understand how it feels, and know what I really mean when I say, “I’m high” or “I’m low.” The Diabetes Online Community (DOC) helped me find my diabetic voice, and has helped me to stand up for myself and for others with diabetes.
Diabetes is an invisible illness. You may see an insulin pump or a blood test kit, but you don’t see what the person actually lives with. You don’t feel what the person actually lives with.
I write to share my life…OUR LIFE…with diabetes. Our needle pricks. Our nights waking up having sweat through our clothes because of a low. Our embarrassment of having wet a bed while sleeping over at a friends’ house because of a high blood sugar. Our guilt from the burdens we unfairly must place on our friends and families. Our heartbreak at hearing our children say they wish diabetes had never happened to them. Our wishing diabetes had never happened to us.
I write to share my life…OUR LIFE…with diabetes. Our time together at diabetes camp. Our excitement when we hear another insulin pump beep in the wild. Our ability to make a joke at the expense of diabetes. Our incredible diabetes community. Our hopes. Our celebrations when we overcome the challenges that are thrown our way.
I write because OUR diabetes is best managed with the strength of a community behind it.
I had a book of haiku poems once. I think I got it at Barnes and Noble on their clearance rack one day, a total impulse buy. I thought I’d be poignant sometime and feature a haiku in my email signature, in a presentation, or maybe just a simple Facebook status. Alas, it never happened, and I think the book ended up going to the used bookstore for lack of use (and because I get tired of lugging around books I don’t read every time I move to a new place). Kind of kicking myself for that decision now.
Today’s #HAWMC blog post challenge is to write a health haiku. A haiku is a “miniature Japanese poem consisting of 17 syllables – five syllables in first line, seven in second, and five in the last. No rhyme or meter scheme is employed when writing haiku. The aim of the haiku is to create something greater than the sum of the parts.” Oh boy…
A disease that makes me want
To go a bit mad
No, that’s not quite what I want…
To live with this thing
Is like life with a monster
That is always pissed
No, I don’t like that one either…
Writing a haiku
And life with diabetes
Are both hard to do
I see headlines from time to time touting various ways to “reverse your diabetes” and “cure your diabetes once and for all.” I’m not of the “diabetes is a temporary situation” camp. For Type 2 diabetics, symptoms may subside and you may be able to get off your medications at some point (such as once you lose weight, or adjust your diet and exercise regimen), but your pancreas and insulin producing mechanics never function quite up to normal specs like they used to. Yes, I’m even talking to you Halle Berry and Drew Carey. For Type 1’s, let’s just face it, thinking you can wean yourself off of insulin is effective suicide.
Today’s #HAWMC blog post challenge asks health activists to focus on a “ludicrous headline or cure about your condition.” The intent seems to be for folks to share the ridiculous “cures” for our conditions, laugh, and write a lighthearted post about it. Instead, the more research I did for this post, the more angry I got.
We all dream of a cure, whether we have diabetes, cancer, or foot-in-mouth disorder, and someday there may very well be one. However, we will never be able to outsmart chronic stupidity. Too many people believe everything they read. If it’s on the internet, then it must be true, right? Wrong.
“People are stupid; given proper motivation, almost anyone will believe almost anything. Because people are stupid, they will believe a lie because they want to believe it’s true, or because they are afraid it might be true. People’s heads are full of knowledge, facts, and beliefs, and most of it is false, yet they think it all true. People are stupid; they can only rarely tell the difference between a lie and the truth, and yet they are confident they can, and so are all the easier to fool.”
We as people with diabetes and people with loved ones with diabetes, we all want a cure so bad that we will believe anything that anyone tells us in the off chance that maybe, by some long shot stroke of luck, it just might work. Remember being told when we were diagnosed that there would be a cure in ten years? I do, and that was 30 years ago.
Some would argue with my stance, but I believe that we will get much further in life by learning to live WITH our conditions, rather than fight acceptance of them. Don’t get it twisted, we should absolutely fight the disease or condition, but not our acceptance of it. With diabetes, we cannot possibly give it the attention it requires if we’re too busy living in denial that we have it.
Right now, today, there is no known cure for diabetes. Not for any type of diabetes. That is fact. But there are some amazing treatments, and modern medicine has come a long way in helping those of us with diabetes to live healthy, productive, and amazing lives with the disease. I overcome diabetes every single day, not because I’m cured, but because I refuse to let it overcome me.
Now excuse me while I go mainline cinnamon…
In a few weeks I am slated to speak to a group of middle school students about diabetes. I’m not entirely sure what to expect when I stand up in front of this group. I know I probably should avoid talking about diabetes in my typical colorful adult way, so I’ve been trying to think about where my head was when I was in 6th, 7th, and 8th grade. Go ahead, try to think about that. It’s a brain full.
Today’s #HAWMC blog post challenge asks health activists to “Write your own health Q&A. Your question can be a real, genuine one about your condition or you can make it a strange, humorous, or satirical health question. Once you’ve asked the question – answer it however you want to.”
Given the challenge, I am going to try and imagine what kinds of questions I might get from 150 middle school students so I can try and craft a response that is middle school age appropriate. I don’t expect that every question is going to have an easy answer, so I don’t want to end up saying something like, “Hell if I know. Diabetes sucks. Next question!”
Ask a Diabetic Librarian
Question: How did you get diabetes?
Answer: My pancreas stopped producing insulin when I was a baby, which is necessary to convert the food I eat into energy so that I can do fun things like play sports, ride my bike, and lead a healthy and active life. Since my pancreas does not produce insulin, I have to take injections of insulin with a shot or my insulin pump.
Question: Do you use drugs?
Answer: In short answer, yes, but not the bad kinds of drugs. Not all drugs are bad, and some are necessary to keep people like me alive. The drug I use to help me live with my diabetes is a hormone called insulin. Without insulin, I would not be here today.
Question: Can you eat sweets?
Answer: Absolutely! However, like anyone, we should only eat sweet foods like candy and cake in small amounts. Nobody needs that stuff, but it is a delicious treat every once in awhile. With diabetes, I simply have to know how many carbohydrates are in the food that I eat. That way, I know how much insulin I need to take to convert that food to energy that I can use.
Question: What happens if you don’t take insulin?
Answer: Have you ever had your finger pricked at the doctor? I know it can be scary, but that finger prick and that tiny blood drop tells us what our blood sugar level is. That is very important for people with diabetes. We use that number, along with what we eat, to determine how much insulin we need. Insulin is responsible for lowering blood sugar levels. Without insulin, our blood sugar would rise to dangerous levels, and eventually cause serious health problems.
Question: Can you die from diabetes?
Answer: Yes, you certainly can. You can also die if someone drops a piano on your head, or if you lose a wrestling match with an angry bear. Having diabetes, by itself, does not mean you are going to die. In fact, people lead amazing lives with diabetes every single day. People with diabetes can be musicians, actors and actresses, pro athletes, or anything else they want to be. As long as you take care of your diabetes, you can live a long and healthy life, and do just about anything you can imagine.