Thursday, August 29, 2013

The Worst Disabled Parking Abuse Ever

accessibility,assistance,communities,disabilities,Fotolia,parking spaces,pavement,sidewalks,signs,transportation,bricks wall,wheelchairsDon't you hate it when you see a so-called disabled person park their car right next to the store in a crowded lot? Then they just get out of the car and waltz their way into the store. They don't even have a limp. What gives with that?

Those parking placards are too easy to get and people abuse them all the time. Nothing is wrong with this person, and yet they get to park in a special spot. They aren't disabled. Disabilities are obvious.

You know what this person needs? Someone to set them straight. Maybe a note on the windshield, letting the driver know she's a bi#ch. Or a hard stare. Or even better, a loud confrontation.

 "You shouldn't be parking there. There's nothing wrong with you. I ought to report you to the police."

Yeah, that's exactly what you should...

NOT
EVER
DO.

Not all disabilities are obvious. There are dozens Invisible Disabilities. I don't look disabled all the time, but I am. Myasthenia gravis is so rare almost no one has it. Picture all the fans at the Superbowl. Imagine 14 of them stood up and waved at the camera. That is how many people have MG out of a hundred thousand.

MG can turn my muscles on, and off, without much warning. Heat makes my muscles weaken faster. I may have no problem walking into a store, but on the way out of the store I might be stumbling behind a shopping cart. Or, I might still be able to walk just fine. I don't know how my body is going to function ten minutes from now. Everything might be wonderful, or I might be drooling, struggling to breathe and crawling on my hands and knees.

Just because I can walk right now does not mean I will be able to walk in ten minutes. I have to adapt my entire life around MG. Sometimes being able to park near the store exit saves me pain and struggle.

Since MG is rare, few people know what it feels like to live with it. Having MG feels like being dipped in invisible tar. Every move I make is through this awful goo that no one can feel but me. I don't "look sick," except for when I do. When I do look sick, my body turns limp and I can't hardly move. The problem is, I have no control over when MG is going to take my strength away. It might be in the middle of the store when I'm shopping, and I always have to be prepared for that. So, yeah, I park in disabled parking, not because I am lazy or faking, but because I have a disability. You just can't see it right now. Being rude to me in the parking lot isn't going to make me less disabled. It is just going to get us both angry. I hate feeling angry more than I hate MG. There has to be a better way.

Here's a tip for you:

If you have to make an assumption about someone with a disabled parking placard, assume they need your compassion, because invisible or visible, disability is hard to live with.

Remember: the worst disabled parking abuse ever is when able bodied people jump to conclusions about who has a disability and who doesn't. Just because you can't see it doesn't mean it isn't there.

Monday, August 26, 2013

Exciting News X2

I have exciting news2 and I have the DOC to thank for it. First bit of news is, I have a cello performance scheduled for September 10th at DuPage Medical Group in Glen Ellyn. I'll be sharing my solo cello compositions, and my crazy health adventures, woven together into a one-woman performance called A New Beginning.

I've been performing about my health adventures for several years. My first show was called Weaving: An Inspirational Journey. In Weaving I shared how I was diagnosed with MG, and cancer, and what life is like as a disabled person. During the show I demystified disability through humor, and truth, and music. Between short talks, I played 10 solo cello compositions I composed. Weaving was well received.

Marie Smith is a remarkable woman.  She plays cello artfully.  She composes
evocative music.  And she tells an incredible  story of overcoming two
life-threatening illnesses.  She joins cello, original music, and her story
into a powerful, even mythic performance: Weaving: An Inspirational
Journey.
 
... It's a triumph of the human spirit that from which every
person will benefit.

Weaving is more than good, it's extraordinary."

                                   — Rev. Edward Searl, Unitarian Church of Hinsdale


"Weaving" is a culmination of talent, humor, music and living life.  There really is no better combination than that, and Marie brings it out in each of us.

                                 — Hannah Alkire, cellist in Acoustic Eidolon

From the very beginning, I found myself on a visual journey of a life that has walked through the valley and the shadows and survived.  The narration of Marie's journey was so descriptive, moving, and involved that I felt caught up in each moment and felt like I was able to feel every experience personally. ...May the wind always be at your back. Thank you for sharing your life pages with us.

                             — Linda Eastman, Diversity Days in La Grange Illinois Co-Chair


After this morning, I left church wishing that everyone (in the world!) could hear you speak and hear your soulful music.

                                   — Holly Lydigsen

Dear Marie,


I am not a musician.

I am not a concert attendee.

I am not a cello enthusiast....


BUT MY WIFE AND I THOROUGHLY ENJOYED YOUR PLAYING THE CELLO AND YOUR LIFE STORY. WE HOPE YOU CONTINUE TO SHARE YOUR TALENTS WITH OTHERS.  MAY GOD CONTINUE TO BLESS YOU AND YOURS.

                                                                  — Milt & Rosalie Honel
 
Well, I am continuing to share my talents with others, thanks to the DOC. For two years my cello was broken and I tried to save money for repairs, but the chronic illness dragon kept stealing it. I didn't think I would ever play Sir Barclay again, until the DOC reached out and helped me raise enough money to fix my cello. You can read about how I got my cello fixed, and my cello advocacy at diabetesmine.com

Ever since my cello was repaired, my goal has been to share what I've learned as a person living with diabetes and myasthenia gravis. I want to use music, and humor, and honesty to bring healing and hope to people. Tuesday September 10th I get a chance to be the cello bard again. @Cellobard is not just a twitter handle, but who I am at the core. I love being a bard. I am honored and excited to get another chance to do it again. Consider yourself invited.

For more information email me, thecellochick@gmail(dot)com


OK, that's the first exciting news. The second exciting news is...


My second book, Life Etudes: Studies In Thriving At The University of Catastrophe, is published. It's on sale now at amazon.com in print and for Kindle. You can also get a copy for your Nook. The iBooks and the audiobook editions are coming soon. 

Life Etudes: Studies In Thriving At The University of Catastrophe is about learning to adjust to life with diabetes and MG. 
  
etudes /noun/ musical compositions practiced as a study to improve technique

life etudes /noun/ compositions about thriving after a catastrophe through changing perspective, finding meaning, strengthening endurance, reaching for transcendence, and making a difference

Life Etudes is in five parts.

Part 1: Perspective I need to keep stretching my perspective so I am not consumed with anger and bitterness. Stretching a wider perspective reminds me I am not trapped. It reminds me I’m not the only student at the University of Catastrophe. I don’t face my problems alone. Neither does anyone else.

Part 2: Meaning I need to continue to find meaning in my life, so I am not dragged down by hopelessness and despair. On the surface, having both MG and diabetes is a disaster. Fortunately, I can see below the surface. I can find the sweet things in my life and enjoy them. I can share them with other people. Knowing I am making another person’s life sweeter gives my life meaning.

Part 3: Endurance  I need to keep strengthening my endurance because this race has been long and I am not at the end yet.

Part 4: Transcendence Every day I need to build my ability to transcend disability and diabetes. They are not the core of my life. They challenge me and create tasks for me to do, but they are not a place where my thoughts and spirit need to dwell. 

Part 5: Shine I want to use my inner light to make a difference for others. I’m not the most important student at the University of Catastrophe. I’m not the bravest or the smartest. The lessons I’ve learned aren’t for me alone. I want to use them to make life better for my classmates.

In Life Etudes: Studies In Thriving At The University of Catastrophe, I shared my struggles and triumphs in learning how to live a peaceful, joyful, meaningful, life even as a perpetual student at the University of Catastrophe. I hope you enjoy reading it as much as I enjoyed creating it.

Could you help me out and spread the word about my book on Twitter, Facebook, and other groups you belong to like Tu Diabetes and Daily Strength? I would appreciate it a lot. The show A New Beginning is booking now. Have cello, adapted bow, and will travel any where, any time. Please email me here: thecellochick@gmail(dot)com if you would like for me to perform for your group. Sir Barclay the Cello and I would be honored. JOY!

Wednesday, August 21, 2013

Dear Cancer

Dear Cancer,

15 years ago today I kicked your ass. It wasn't easy, but I did it. I went to the hospital at five in the morning unsure if I would leave in a body bag. You see Cancer, I only had a 40% chance of surviving my surgery. I was warned ahead of time it would be easier to die than survive. You were with me that morning, growing silently in my thymus gland, wrapping your cancerous tentacles around my aorta twice. I had two choices that morning: kick your ass or die. You wanted me to drop dead. I wanted to live. You lost. I won. Do you remember how?

I undressed in a locker room and put on a hospital gown. I put on support stockings that barely fit. Knowing what was coming next, I took a deep breath and faced you down. After I put on a hospital gown, hands guided me and I stretched out on a gurney. I got an IV in my arm and watched as a man taped the IV in place. I sat up and got a spinal catheter in my back for pain relief after surgery.

Then the anesthesiologist said something about medication to help me relax. Relaxing sounded like a good idea. I watched her hands moving, putting a needle in the IV line. Then I looked at a hideous yellow-green wall. The wall clock said it was a little after six in the morning.

I blinked.

I looked at a hideous yellow-green wall. The wall clock said it was a little after five in the evening. Hands touched my arms and face. Voices chattered words I couldn't comprehend. "Mrs. Smith. Mrs. Smith?"

Who is Mrs. Smith? Where is Mrs. Smith. For that matter, what is a Mrs. Smith?

"C'mon. It's time to wake up. Surgery is over. You did great."

I did what? Surgery is over? How can that be? It's only been a second. I turned my head a millimeter to the left. Apparently, my little head bob was the cue for the gorilla on my chest to dance. I'm not kidding. Right under my chin an invisible 500 pound gorilla wearing extra sharp golf cleats danced! Now, that woke me up! The pressure directly under my chin stunned me. I could hardly breathe. The pain was just off the scale. Not surprising, considering for the past nine and a half hours my entire rib cage was ripped in two down the center. Hand me the bone saw. Anyone seen my rib spreader? Sorry, I think I left it hanging on my barbecue grill.

There are no words to fully describe the pain of a median sternotomy and I know why. When the English language was in its infancy, and some poor dude got a battle axe embedded in his chest, he died before he had a chance to cry out. He certainly didn't invent a new word on his way to a dirt nap. Whack! Dead. Meanwhile, after being split open with an electric saw, I clung to life.

Cancer, you tried to kill me that day and the next day, when my heart and lungs swelled. When I got an infection you almost did kill me. But I was stronger than you. I am still stronger than you.

Surgery to remove you hurt so badly I cried every time I changed the channel on the remote control. I couldn't hold a book. I couldn't bring my hands together. I couldn't play my cello for a year. You stole my music for an entire year, Cancer. I didn't bounce back from surgery. I crawled back. Inch by painful inch, I crawled my way forward until I won my cello back. I couldn't have a hug without pain for two full years. Two years without the comfort of a hug because of you, Cancer, and guess what? I survived that, too.

I didn't know if I would live to see my 30th birthday because of you. But I did live. I turned 30. And 31. And here it is 15 years later and you're still gone, Cancer. I kicked your ass. Remember me. Remember my name. If you ever come back into my life, I swear I'll kick your ass again. Because life is worth fighting for. It's worth crying for, struggling for, striving for, and pushing ahead no matter what. Life matters. Even when it hurts so much just breathing makes you cry, fight anyway. I fought you and I won. You came. I saw. And I conquered you, you son of a bitch. Goodbye Cancer. Good riddance.

Ever so insincerely, your arch nemesis,

Marie

Strip Safely Campaign

Strip Safely_BANNER 

Test strips. I use about ten every day. My fingertips have tiny holes in them. I've seen thousands of numbers on my meter screens. Every single number helps me cope with diabetes. Or does it?
On my meter I've seen this.
And I've seen this.

I make daily decisions about my health based on the numbers on my meter. But, what if those numbers are wrong?

I don't mean what if my meter says my blood sugar is 120 and it's really 119. I mean, what if my meter says 200 and my blood sugar is really 120, or 280. Or somewhere in between.

If you think that's impossible, take a look at the eye opening quiz on Strip Safely.

http://www.stripsafely.com/


Did you know the accuracy standards for glucose meters were set in 2003? How long ago was that? Well, in 2003, the iPhone hadn't been invented yet. YouTube hadn't been invented yet, either. Facebook and Twitter didn't exist. A lot has changed since 2003. Our meters need to change as well.

Although the standards set in 2003 require meters to be accurate +/- 20%, 95% of the time, not all meters are meeting that standard. Some meters are off by as much as 40%.

Here are  recommendations from the Strip Safely Website:

  • Recognition that the accuracy of BG strips is a public health and safety issue. ◦ 25 million PWD in USA are at risk.10
  • Ongoing testing of BG strips to assure compliance with regulatory accuracy standards.
  • Quality assurance should be done on strips sold through normal distribution channels.
  • Standards for accuracy should improve to the latest ISO standards.
  • The standards that meters and strips are failing to achieve is 2003’s +/- 20%, 95% of the time
  • We need better accuracy standards than ones created in 2003.
  • CMS competitive bidding should create a process that consider quality not just price.
  • Public awareness of how to file an adverse event complaint on BG testing systems.
  • Contact information to file an adverse outcomes report should be on all BG testing devices.

 I wouldn't accept a steering wheel with +/- 20% accuracy 95% of the time.  Can you imagine having a speedometer that registered your speed +/- 20% 95% of the time. Or a brake pedal stopping your car  +/- 20% of the time? As a person with diabetes, my meter is my speedometer. It's my steering wheel. It tells me when I need to give myself more insulin, and how much.

Right now my meter says my blood sugar is 100. Or is it 120? Or 80? 60? 140? The truth is, my blood sugar is somewhere between giving myself a correction through my insulin pump, and eating a glucose tablet. All I want to do is look after my diabetes. What good are meters if I can't trust them?

http://www.stripsafely.com/

Take a look, and then make some noise. It matters.



Wednesday, August 7, 2013

A Note to Writers: Diabetes And Drama

I was watching a show on Netflix, and in the opening scene there was a character who had diabetes. He was shaking, and sweating, and fumbling for his glucose tablets.

Wait...

No, that's not what happened. The character was showing signs of severe low blood sugar, and of course he treated himself with insulin. Because, that's what all diabetics do when they are low... on TV.


 http://i0.kym-cdn.com/entries/icons/original/000/000/554/facepalm.jpg

As a writer, I can understand different ways diabetes can fit into a plot.

-- Syringes freak out most mere mortals
-- "Drink the juice, Shelby!"
-- Insulin vials can be spiked with a toxin, or poison, or...

Besides, some symptoms of low blood sugar, like sweating and shaking, look good on camera. So do syringes. I mean, they are sharp, and go into the skin, and ewwwww!  Maybe writers don't realize how high blood sugar--which really is treated with insulin--could fit into a plot, too.

For example... A character at a restaurant drinks 9 glasses of iced tea during one meal. I, ahem, actually did this a week before I was diagnosed with diabetes. I drank nine glasses of iced tea, and three glasses of water, and I was still thirsty. Excessive thirst is, well, excessive. Excessive can be interesting in a story.

Maybe a character finished three water bottles in the parking lot, walked into a building only to find out the water cooler is empty. Maybe there some sort of emergency and the water is cut off to the whole building, so the character grabs a flower vase, flings the flowers on the floor, and drinks water from a vase.

How many different ways could excessive thirst play a role in a crime drama? Something nasty in the water? Foxglove flowers in the vase poisoned the water with digitalis?

Here's a thought, have a character test their blood sugar. Blood always looks good on camera. If you need both panic and insulin to be part of your storyline, just make the meter look like this...

Look, the meter says HI.  Isn't that sweet? Hi Nano. Hi back. Oh... wait. That's not a friendly Hi at all.

That HI means holy @#^% my blood is turning into pancake syrup. A possible dramatic reaction to seeing a HI on a meter might be akin to seeing the toaster is on fire. (I, ahem, yelped pretty loud.) That reading will upset anyone with diabetes, real or imaginary. After seeing a HI on the meter, and flipping out, NOW the character can fumble for an insulin syringe.

Your job as a writer is to invite your audience to suspend their disbelief and enter into a fictional world you created. The more reality you bring into your fictional world, the easier it is for your audience to join you. If your character is talking about pine trees, and pointing to an oak tree, the audience backs away from your fictional world. Eating an orange, and calling it a banana, will do the same thing.

To wrap up... Low blood sugar is treated with candy, not insulin. If a character is shaking and sweating and nervous, they need a snack.

High blood sugar is treated with insulin. High blood sugar triggers excessive thirst. Feel free to use out of control thirst, a meter reading HI, to establish the need for insulin. After that, go ahead with your insulin based plot line. Your story will be more believable. Remember, the audience wants to believe your fictive world is real, so play fair and we will join you in your story.

Now, go write something amazing. I'll be watching.

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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