Saturday, April 28, 2012

WEGO Health Activist Writer's Challenge Month - Day 27

Today’s topic: 5 Challenges & 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

The Challenges

  1. Dealing with how incompatible myasthenia gravis and diabetes are is the number one most challenging thing in my entire life. Should I listen to this advice about dealing with diabetes?

It’s hard to find a medical condition that exercise doesn’t improve, and type 1 diabetes is no exception. But some types of exercise are better than others for people with type 1 diabetes.
"We know that exercise will prevent cardiovascular disease, and patients with type 1 diabetes are at risk [of cardiovascular disease]," says Jennifer Goldman-Levine, PharmD, a diabetes educator and associate professor of pharmacy practice at Massachusetts College of Pharmacy and Health Sciences in Boston.

If you have diabetes, here is what else exercise can do for you:

  • Reduce blood pressure and blood sugar levels
  • Raise good cholesterol levels, lower the bad ones
  • Improve how your body uses insulin
  • Reduce the odds of having a stroke or developing heart disease
  • Promote a strong heart and strong bones
  • Reduce your odds of falling
  • Help you shed pounds
  • Provide more energy
  • Reduce stress levels
— From Help Manage Type 1 Diabetes With Exercise
By Krisha McCoy, MS
Medically reviewed by Pat F. Bass III, MD, MPH

Wow. That’s great advice. I can't wait to get started. Except…


Many things can exacerbate myasthenic weakness temporarily, including infections (such as a cold, pneumonia, or even a tooth abscess), fever, excessive heat or cold, overexertion, and emotional stress. Here are some everyday tips on how to conserve energy.
  • Don’t stand when you can sit.
  • Plan all activities and eliminate extra steps; assemble all the necessary equipment before beginning. Don’t be embarrassed to ask for help.
  • Use a cart, wagon, or basket to carry several things from one part of the house to another, eliminating unnecessary trips back and forth.
  • To ease difficulty getting up from a sitting position, try leg extenders to elevate chairs.
  • Try a shoulder pad or intercom phone to completely free your hands when talking on the phone.
  • Avoid hot and cold weather extremes; they exaggerate weakness.
  • Try an electric toothbrush and toothpaste pump to conserve hand strength.
  — Adapted from

I feel like yelling...

How am I supposed to exercise while conserving energy? Can someone please explain it to me? Which disease wins? Is it diabetes? If I don’t look after it my blood sugars can skyrocket and put me in a coma. Or is it MG that needs my attention? If I overexert myself I can wear out the muscles involved in breathing and have another myasthenic crisis. Exercising makes me breathe deeper and harder. Which of course makes my breathing muscles weaker. The line between exercising and overexertion changes every day.

It’s frustrating trying to live inside a body that is falling apart around me. Every day is opposite day. My entire life is a paradox.

2. Fear. What am I going to get next? My thymus gland had a tumor in it. My thyroid is enlarged. My muscles have MG. My pancreas isn’t working. What next? Which endocrine gland is next? I live inside a sandcastle and it is high tide. I watch the waves steal pieces of my life but I have no ability to stop it.

3. Chemotherapy sucks. Chemotherapy weekly sucks. Chemotherapy weekly for the past 6 years really sucks. Every Monday I hold those pills in my hand and wish I could just switch it all off.

4. Mestinon, a medication I take for MG has some violently unpleasant side effects. Muscle spasms, diarrhea and my personal favorite, drooling. Four hours after I take it it signs off by making my chest muscle cramp. Ever been kicked by a horse? It feels like that. Every. Four. Hours. For 14 years.

5. Fatigue. Not a physical tired. I feel a psychological fatigue that no amount of rest or therapy can touch. I’m weary inside. I’ve been in the arena fighting lions since 1997. I’m sick of fighting, even though I know I should keep going. There are times when I don’t want to do this anymore. I consider setting every treatment aside and simply letting go of this life. Today is not that day. But I am aware that I am tired of holding up this sword and I cannot swing it forever. Here comes the next wave of lions.

The (not so) Small Victories

1. I am writing again after a terrible battle with writer’s block. Writing is how I make sense of the world and my place in it. I’ve been blindfolded and trapped in the dark since 2010. There have been days I’ve been too blocked to even send a Tweet. I’m writing again. Hibernation has ended and I’m out of the cave.

2. My insulin pump is coming on Tuesday. I am hoping that adding a pump will simplify my diabetes life. I test my blood sugar before I eat anyway so telling the Ping to bolus will be nice. I won’t have to get my insulin pen, find a needle, clean my skin, dial up the dose and inject. After testing I'll be able to push some buttons and eat. I’m looking forward to doing that. I want to wake up with a blood sugar below 100. That would be amazing.

3. I am finding the strength to walk in a local forest preserve almost every day. Going for a walk instead of using a powerchair has been a huge victory for me. It feels good to move. It might not be the kind of exercise that experts recommend, but the experts don't have MG. I do. I'm doing the best I can. I get to be proud of that and not ashamed.

4. Blogging has been a powerful change in my life. I’ve struggled with shyness and being unsure of myself. Blogging has given me confidence and strength when I needed it.

5. Tweeting more and connecting with other people dealing with diabetes has been life changing. Through #DSMA and #DOC I’ve discovered I’m not alone. I even connected with Caragh who lives in Northern Wales. She has both MG and diabetes. Connecting with her made me feel wonderful. I’m not the only one trying to do the impossible dance. No matter how hard this is I’m never alone in my fight. Lions will continue to charge at me and I’ll keep swinging. My family, my friends, the DOC are cheering for me. I know it. I feel it. And it matters.

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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.

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