Friday, November 30, 2012

Language Matters

If you haven't had a chance to read this Diabetesaliciousness post about never saying someone has severe diabetes, take a look. Kelly reminded me how much language matters. She also reminded me how inadvertently hurtful people can be. The ignorance of saying someone has severe diabetes based on the use of an insulin pump is cringe worthy. But, instead of cringing, or getting instantly angry, Kelly took a moment to teach a little more about diabetes. Thanks to Kelly one person learned something new and got a perspective adjustment.

An anonymous African American slave is credited with the proverb, "Each one teach one." If you learn to read it is your duty to teach one other person how to read. If you gain any knowledge pass it along to one other person. Kelly did this and then shared the process on her blog. It gave me a huge smile when I read it. Each one teach one.

I've only dealt with the crazy Disney World teacup ride of diabetes for a year and a half. I have dealt with disability for 15 years. I've used a powerchair off and on for eight years. Depending on where MG is attacking, some days walking just sucks.

"Severe diabetes" made Kelly cringe. "Confined to a wheelchair" makes me cringe. One of the most liberating experiences I ever had was the day I took my first powerchair out into the world.

I spent an entire summer with leg muscles that grew weaker every day. When my legs wouldn't move more than ten steps without collapsing, my world shrank. Getting an ice cream from the ice cream truck was impossible. Going to a store, a movie, out to eat with a friend vanished. Going to a wedding, a funeral, a graduation, a school play, a concert, a park, the zoo, a museum -- all of these ordinarily things that make life worth living disappeared. For five months I was on house arrest. Not because I committed a crime. I was trapped because I needed a powerchair and did not have one. That was the most confined I have ever been.

I received my first powerchair in November of 2004. I rocked my hand forward on the joystick and moved by myself. I went for a cruise on the sidewalk a whole block away from home. Two blocks. Fifteen blocks. I went to a park and watched the leaves fall. For the first time in five months I wasn't confined anymore. I was free. The joy I felt still echos in my life.

Confined to a wheelchair? Confined? Really? Confined is needing to move and not being able to move. I can move! I am anything but confined. My powerchair, like my insulin pump, transformed my life for the better. Confined to a wheelchair is cringe worthy in its inaccuracy. Ditto with wheelchair bound.

Instead, we can say Marie is a wheelchair user. Or Marie uses a wheelchair. She is a powerchair user. She uses a powerchair. A powerchair is a tool I use, not a destination, or a reflection on the joy in my life. I love my powerchair. I love my insulin pump. I feel blessed to have both in my life.

Terms like confined to a wheelchair, or Wheelchair bound, assume that a wheelchair is a trap. I am trapped by the distance my legs can move before I fall down. Confined to a wheelchair and wheelchair bound convey pity and a sense of hopelessness when the opposite is true. The terms heap negative assumptions about the person who uses the chair. A wheelchair is adaptive equipment and not a state of mind. Adaptive equipment is commonplace. After all, eyeglasses and contact lenses are also adaptive equipment.

 Confined to glasses. Contact lens bound. No one would say that because it sounds ridiculous. Glasses and contacts enhance life. They don't restrict it. Everyone knows that.

The perspective shift is this...

Glasses are for eyes. Wheelchairs are for legs. That's it. That's the only difference between them. Knowing this, consider the terms confined to a wheelchair and wheelchair bound. Don't they sound ridiculous? Wheelchairs don't restrict life. They enhance it! Now, each one teach one.


Monday, November 26, 2012

Bad Insulin. Bad! Bad!

I was dozing on the couch when I heard a buzzing noise. My Dexcom was on the coffee table buzzing away. Buzz! Buzz! May I have your attention please. Your blood glucose is high. Repeat, your blood glucose is high! This is not a drill! Buzz! Buzz!

I saw the number 350 on my Dexcom and assumed it was the time. Except the time doesn't usually have an arrow beside it. And doesn't the time usually have a colon between the numbers? Wait, is my blood glucose really 350 and rising fast?

I rolled over and fumbled for my testing supplies. I used my iPad as a flashlight when I checked my blood glucose. 338. It was 338 at 3:34 in the morning. I sat up. Sleepiness evaporated. Why in the %#$* is my blood sugar so high?

Last time my blood glucose was that high I forgot to reconnect my pump after my shower. I felt my pump tubing and the connection was solid. It took me a moment to figure out what to do next. Troubleshooting at 3 am is hard on the brain.

My head felt like someone hung me upside down by my ankles. That head rush, my blood sugar is soaring, feeling made my stomach hurt. I headed for the laundry room closet where I keep my syringes and then realized I'd forgotten to get more. Crap! Ok, I'll use my pump to correct. I told my pump what my blood sugar was. XPU the Pump said, "You need a crap load of insulin." She suggested a bolus and I clicked OK. I felt the sting as the insulin went in my site.

I went back to the sofa and waited. At some point my blood sugar was going to go down. Half an hour later Dexcom Buzzed. Warning! Warning! Your blood sugar is higher than a kite. I checked. 301. Well that's an improvement. Another hour went by and then another. Sunlight streamed into my living room. Three hours later my BG was 280. That cannot be right.

I yanked off my set, put in a new set and tried again. Three hours later my blood glucose drifted down to 250 and then stayed there. I had more insulin in my body than gas in my car. Why isn't this working? Is my pump broken? I primed my set and watched insulin pool on a paper towel. My pump was working fine. I let out a groan. I was so tired. It was eight in the morning and I hadn't gone to bed yet. My daughter and husband got up and had breakfast. I was telling them what was happening with my blood sugar when Dexcom buzzed again. Danger! Danger! Your blood glucose is high!

I felt like crying. My head hurt. I was hungry. No matter what I did I couldn't make my diabetes behave. Ten hours later I decided to yank the new set, dump the insulin in my cartridge, open a new vial and start all over again. One rage bolus later my BG fell immediately and settled into a happy 118.

I can only come to one conclusion: the insulin in my pump was bad. Bad insulin. Bad! Bad! I was pumping skunky insulin the whole time. This experience taught me a few things.

1. Dexcom rocks. I get upset with it for being inaccurate sometimes, but it woke me up when there was a problem. I love my little guardian angel egg.
2. Not getting sleep sucks.
3. Always have syringes. Always.
4. Insulin is magic sauce. Except for when it is bad and needs to sit in the time out chair.
5. Don't wait 10 hours before changing the cartridge and the set. When in doubt, throw it out.

By some miracle I only tested positive for small ketones. Maybe it's because I started intervening right away? I've decided to stop using vials and fill my pump with insulin pens instead. That way when Dexcom wakes me up in the middle of the night I'll be ready. But right now... I need a nap.

Monday, November 19, 2012

On Failure

I have spent the past few months writing a book. It's the sequel to LIFE MUSIC: Lessons Learned at the University of Catastrophe. You can read an excerpt here. The new book is another collection of essays reflecting on living with (and around) diabetes and MG.

I've gotten 34,396 words done of a 60,000 word draft. I am just past the halfway mark. Or at least I thought I was. For the past three weeks I have had a nagging suspicion that I am writing the wrong book.

At first I denied it. I wrote endless journal entries about self-doubt and read about writer's block. Am I letting anxiety and doubt cloud my thinking? Determined to finish the book I kept working on it.

Only, the more I wrote, the worse my doubt became. Am I lost? Am I running a marathon race in the wrong direction? Am I doing this wrong? Have I... failed? Last week I looked over my draft and vacillated between finishing it and starting over.

 On Saturday my doubts overflowed into a meltdown. In tears I told my husband that I think I am writing the wrong book. That's when Steve reminded me the same thing happened when I was writing Life Music. I wrote the wrong book first and then I wrote the right one. I'd forgotten. As soon as he reminded me, the nagging feeling went away. My current book draft is a failure. A 34,396 word, 109 page, failure. I have spent several months on a journey using a broken GPS and an upside down map.

Marching with great confidence in the wrong direction is part of writing, or any bold endeavor. Fear of failure has hindered me in the past. Now I realize that failure is part of creating. Failure throws bricks at me. It doesn't feel good to be hit by bricks, but it happens sometimes. I can choose to stay buried under my failures, or I can stack them up and stand on top of them.

I tried writing a book and 34,396 words later I failed. How liberating! Now I have freedom to let go of what doesn't work so I can search for what does. This failed draft isn't my first draft, or my rough draft. It is the compost draft. Grind up the words that don't fit and turn them into compost. The next 34,396 words will be better, closer to my vision, and worth all the panic attacks and tears. Tonight I am stacking failure bricks and standing on them.

I am taking a break from my book project until January. After I toast the new year, and recover from my hangover, I'll be back at it. You can count on it.

"Put down everything that comes into your head and then you're a writer. 
But an author is one who can judge his own stuff's worth, without pity, and destroy most of it."   Colette (Sidonie-Gabrielle Colette)


Wednesday, November 14, 2012

World Diabetes Day

Today is World Diabetes Day. I celebrated by going for a walk. My blood glucose was 153 mg/dl when I started and 126 mg/dl when I was done. The entire time I was walking I thought about The Big Blue Test. I thought about #DSMA. I considered how many millions of people around the world live with diabetes.

When I was diagnosed July 24, 2011 I felt alone. I felt like I was the only person who had diabetes. I didn't now how I would handle all the changes in my life. Then I found the DOC. I found other people living with diabetes, thriving with diabetes, sometimes cursing diabetes. I saw how they took care of their diabetes and managed it. I discovered there are other people who start their morning with a blood drop, a meter and a soft grunt at the result. Millions of people do this every day. And so do I.

The people who live with diabetes, and live around it, and parent around it, are my tribe. We are a worldwide tribe of people who "get it." I have to live with diabetes. World Diabetes Day reminds me life is best lived....

Together!

Thursday, November 8, 2012

Bubble Trouble

Several nights in a row my Dexcom has woken me up.

BUZZ BUZZ. Excuse me, Marie. I hate to be a bother, but your BG is rather high right now.

BUZZ BUZZ It's me again. I hate to disturb you, but it seems your BG is high again.

BUZZ BUZZ Oh I am terribly sorry. My programing requires me to inform you that your blood glucose is high.

BUZZ BUZZ...

Shut up! That thing is more demanding than a puppy.

It was also right. My blood sugar was rising overnight. I got into a routine of testing and correcting with my pump, getting frustrated and giving myself a rage bolus with a syringe. My blood sugar fell as predicted. So, why wasn't my pump working.

droplets,nature,splashes,water,bubbles,waves,ripples,airI got up, changed my set, primed my tubing, went back to sleep and everything was fine. For a day or two. Then the same thing happened. I was so frustrated. Finally I pulled out my cartridge instead of my set. Then I saw it. Bubbles. Hundreds of them. Bubbles everywhere, like some lunatic spit at the top of my cartridge. Where did these evil things come from? I primed out the bubbles and everything worked better.

Now I have a new and improved pump filling routine. I fill my cartridges 48 hours in advance. This gives all the almost invisible bubbles a chance to migrate to the top of my cartridges. Then I push them out of the cartridge while my pump is rewinding. Bye bye evil bubbles. Finally I stopped having bubble trouble.

So of course yesterday I forgot to plug my pump back in after my shower. Yeah, that was kinda dumb. It turns out not having insulin for several hours wasn't a good idea. I did get to see what a ketone stick looks like when it turns purple. And I learned that high blood sugar can make my face buzz like I am playing an invisible trumpet. Between my pump and yet another syringe, I got it straightened out.

Bubbles I can fix. Being an absent minded professor, not so much. Ah well. Two steps forward, one step backward. That's still forward progress and it matters.







Disclaimer

I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

If you are enrolled with your own major at the University of Catastrophe, please consult your doctor, therapist, attorney, auto mechanic, veterinarian, plumber, dietician, arborist, acupuncturist, manicurist, mother, local dairy council, shoe shine boy, or other equally qualified professional, for advice and assistance.

If you email me your personal information will not be shared without your permission and your email address will not be sold. I hate spam. Even with eggs.

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