Life.

I haven’t had a many ideas lately for writing a Type 1 Diabetes blog entry, but I do today. So here goes.

I don’t think I’d be way off base by saying I am a bit of a free spirit. I don’t like following orders, I don’t like people questioning my motives, I don’t like the rules… wait… this sounds darn right bratty… hmmm. Oh well. All our lives it seems we are taught to do the “right thing.” What is the “right thing?” For a middle class midwestern family I’d say it’s go to college, pick a good major, make sure your future is accounted for by the time you turn 18, settle down, have some kids, blah, blah, blah, rules, rules, rules. None of this is bad by any means. People are very lucky to have accomplished these things, but it isn’t always right for everyone. We are raised to follow our dreams, reach for the stars, all those other cliché sayings. What they don’t tell us is that yes, you should follow your dreams… as long as it’s financially responsible. Reach for the stars, but try to keep your feet on the ground. Now I’m not saying every middle class American family is like this, but in general? Yes. For the lucky ones (what I consider lucky, anyway), they break through and break free. As a type 1 diabetic, I don’t see how it’s possible to break free. Spread the wings and fly… (Is that a song? I think it is…I believe I can fly, I believe I can touch the sky, spread my wings and fly away… oh, R Kelly…) Anyway, We have to have insulin. It’s integral to living. Insulin is not cheap. How could we possibly drop everything and move to a new city, a new country, change our career path, or move to an island somewhere to sell coconuts on a beach? Anything but stay where we are? We have to have a plan, we have to have a job lined up, make sure it has a good health insurance plan, all that jazz. The kind of stuff that clips the wings of any sort of free spirited bird. The whole situation is frustrating.

I am not saying I want to run off to Mexico City and work for an amazing foundation that rescues big cats or anything, but I’m not saying it’s something I don’t want to do either. I want the option. I want to be able to think about my future and not have to consider my disease and limitations. I want to go scuba diving with some dolphins, gosh darn it! Being a free spirit for a healthy individual is hard enough in a small town middle class American society without throwing in an expensive chronic disease to go with it. I just wonder if there are any Type 1’s out there that have broken free of the expected? If so, I sure would like to hear their story!

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Leaky Pipes

Random #1: “Do you smell that?”

Random #2: “Smells like….(sniffs)…. a hospital?”

I hear this and I automatically grasp frantically at my stomach. Son of a bee sting. My pump is leaking.

“Sorry, guys. I have a leaky faucet situation going on here.”

My pump machinery is connected to a 26ish” tube that is attached to a little sticky thing that has a tiny tube about as small in circumference as a needle is, which is then inserted at my stomach or hip area for 3-4 days. Sometimes the sticky part can get loose towards the end of the cycle, and in turn can make the tube portion come out of my body and the insulin I should be getting on my insides is leaking onto my skin and a “hospital/medicine” smell ensues. I don’t always catch onto it right away because I’m used to the smell of insulin. It smells like…insulin or a hospital if you so choose. On that note, I hope I don’t always smell like a hospital. I don’t think I do. Do I?

Back to the post… Think of a Band-Aid being on you for a few days. Life happens, it loses its sticky goodness after awhile. My pump sticky thing is stronger than a Band-Aid, but maybe you are getting the picture? I feel like your eyes are starting to glaze over and you are thinking about some random acts that happened to you today. Maybe you are wondering if you turned the stove off or other such nonsense. Well, stop. I’m trying to explain things here in an unintelligent manner. Geez.

This is not me. I found it on the internet and I’m not trying to gross anyone out, but perhaps this gives you the jist…a picture is worth a thousand words, right?

It’s very frustrating when I lose insulin. That stuff isn’t cheap! 3 teeny tiny bottles of it is around $400 and lasts about 3 months…for me at least. Luckily I have insurance that covers it 100% after my deductible is met. Are you starting to see why insurance is so important to me? My pump itself cost around $6,000. The supplies that go with it are probably around $400 – $600 every 3 months, not including the insulin itself. My new continuous glucose monitor thing-a-ma-bobber (I call him “Bob”) involves sensors that are inserted every 3-6 days and they are roughly $42 each. Blood testing strips cost an arm and a leg. It’s crazy how much money this stuff costs. I don’t want anyone to feel sorry for me. I’m lucky and have good insurance, but some don’t and I can’t even imagine what they are going through…well, I can imagine I’ve had my fair share of insurance worries. It’s a punch to the gut. Or maybe a good wallop to the face.

Hims just a little guy.

Troubles When You Get High

Rewind to…oh… 21 or 22 years ago. It’s is the early 90’s. Saved by the Bell is the coolest thing since sliced bread. Scores of kids are either inside playing with their new Super Nintendos, watching an awesome tv show (Saved by the Bell or Full House) or maybe they are outside shooting some b-ball pretending to be Michael Jordan (Amanda, that was for you and your fam…ha! I’m totally kidding!).

       

I’m still a bit of rugrat. Crazy hair, crazy shoes, crazy face. So, one day I’m heading home from school on the school bus sitting next to the weirdo who tried to give me a cupcake when I first became type 1 diabetic, We shall call her Al. Al and I are sitting on the edge of our brown, plastic bus seats, ready to jet off the contraption and head to her house where we will get a Nutri-grain bar from her cupboard, pull up a couple of kitchen stools as close as we can to the TV and watch…wait for it….wait for it… Saved By the Bell. On this particular day I happen to be quite a bit more on the edge of my seat as I have to pee…and I mean really really really have to pee. Finally, after years and years of waiting for our 10 minute bus ride to end we are out. We rush to Al’s house and as we get to her front door it happens. My pants are getting wet and a puddle is developing at me feet. Uh oh. I peed my pants… again… only five feet left to salvation, but I didn’t make it…

It is not until years later (and constant teasing from Al) that I realize what was happening to my body. My blood sugar was high. See, when we diabetics have high blood sugars it means there is an excess of sugar in our blood and our bodies are trying to dispel it through urine. I can always tell when I’m high because I constantly need to use the restroom, and if the blood sugar is higher than high the need for a restroom can be extreme. Think about a time you really really had to go then multiple that by 100. That is how bad it can get if you don’t go in a reasonable amount of time. I have since gained control of my bladder regardless of the highs. I haven’t peed my pants since the early 90’s, although there was an almost accident a few years ago during a vacation to Long Beach Island, NJ with a college chum for chum. (“a chum for chum” is from Finding Nemo), but that’s another story that would take too much time to type right now. Also, I’m trying to cut back on the length of my posts before I start losing my readers…

One more thing…for future reference… sometimes when I say or type a word it may remind me of a movie quote and I must say/type it or my head will explode. And I’m still typing… ok.. I’m done! Geesh! Peace out, and as Ellen DeGeneres says at the end of all her talk shows… “Be kind to one another.”

Below is a link to a “You might be a 90’s kid if…” type of thing. Might bring back some memories.

http://youtu.be/Agl8K5NgXfU

A friend in need is a friend indeed.

Open curtain. It was a dark and stormy night, the wind was howling like a pack of angry coupon clippers who got denied at the cash register. Cue in on a young 5-year-old girl fighting her way through the night to deliver a single package containing a prized cupcake. She arrives at her destination, cupcake in hand, only to be denied at the door with a “She can’t have any sugar!” (This sounded a lot like the infamous line from A Few Good Men “You can’t handle the truth.”) The door is then slammed in her young impressionable face as a single tear rolls down her face…

Ok ok…that was an extreme exaggeration. The truth, without all the drama, is that when I was diagnosed with type 1 diabetes my best childhood chum, who lived a few houses down the street from me, found out I was “sick” and decided to bring me a cupcake to make me feel better. She didn’t know that I wasn’t allowed to eat the amount of sugar that would be found in the cupcake. She only knew that her friend was sick and she wanted to help. She has since learned her way around my lows and highs and gives me the tough love I need to take care of it.

Like her, I have had other great friends who have been a constant source of support throughout my journey, and I’m sure I have taken for granted how lucky I am to have them. They know when I am being weirder than my normal crazy self and prompt me to check my blood sugar. They let me know if I’m about to hop in a pool and I forget to disconnect from my pump (sadly, I have done this multiple times…I forget it is there sometimes). In grade school they would have me fake a low blood sugar and go get my “low blood sugar food stash” from my locker, so we could snack while watching videos about Bill Nye the Science Guy. In hindsight, it was not the best idea to fake lows for their gain and mine, but we were kids and kids do crazy kid things. In my mind if I was going to deal with this disease the rest of my life, I might as well use it to my advantage… That sounds bad, but that’s how I felt at the time.

When I decided to do this blog I went to a couple of my nearest and dearest friends for their opinion and they were nothing, but supportive. Actually, one of them, Julie Wilkinson, helped me come up with the name of this blog and she has also written a nice little ditty about it on her own blog, Wilkipedia. She is a smart, creative and funny lady. If you need a good chuckle you should probably head over to her page and check it out. In the words of the Nike slogan, Just Do It.

Anyhoo, there are times I can get very frustrated and angry that I have this stinking diabetes, and the only people who can truly understand that feeling are the ones that also have a chronic disease. The stress of making sure you always have supplies on hand, dealing with insurance, the highs and lows, dealing with insurance, trying to act like a normal person, and dealing with insurance builds up until you just want to punch someone in the face. I know it is a manageable disease, and it’s not like I am dying of cancer, but it can still get the best of me at times. Luckily, I have wonderfully magical friends that will make me laugh and put my issues into perspective. I’m not dying of cancer. My disease is manageable. If I want to run around in circles screaming in joy, I can do that… and do sometimes. It’s how I roll, I’m a bit of nut.

The moral of the story is this: I love my friends, and am thankful to have them in my life. I will close this out by singing the theme song from The Golden Girls…

“Thank you for being a friend
Traveled down the road and back again
Your heart is true, you’re a pal and a confident.”

Note: I really did sing this in a strange high voice creation that I concocted on the spot. It was awesome… the cats (I have 2) were terrified. Success.

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