Thursday, October 24, 2013

Hermit Mode

I've been in hermit mode for a few weeks. I've withdrawn from everything and just about everyone. Life has seasons where I am busy and enthusiastic, vibrant and lively. Earlier this year I was busy writing my book and getting it finished. Winter into autumn is a highly creative time for me. When summer ends I'm excited to share what I've been creating.

Then the weather cools down and so do I. Leaves fall off the trees. When autumn comes, I back away inwardly and outwardly. I find myself in hermit mode, needing to be alone to reflect and renew. The leaves in my back yard are slowly rotting away. I find myself feeling like I am rotting, too. I'm backing away and turning into a quiet hermit.

It used to distress me when this happened. I wanted to force myself to be social, and outgoing, when in reality I'm an introvert at heart. I wanted to force myself into creating and panicked when I felt withdrawn and uncreative.

The truth is, I'm not blocked creatively. I'm resting and creating compost inside. Things will grow and bloom again, if I honor my need to back away. Right now I am in hermit mode. I'm quietly studying Japanese, and reading many books on my iPad. I'm spending eight to ten hours alone in silence every day. I'm giving myself the space I need to renew, and giving myself permission to embrace being in hermit mode.

Hermit mode used to scare me. Now I recognize it for what it is: my way of letting go of what was, and making space for something new.

I'm looking forward to sharing my cello and advocacy next year. I can hear music waiting to be composed in the rustle of leaves under my feet. I am thinking of things I want to say on stage, and how I want to express them. However, after sharing music and performances, I'll find myself in hermit mode again next autumn.

Grow, create, give life, wither, and die back, is the natural cycle on earth. I'm finding it to be the natural cycle for me as well. The trees are letting go of their leaves in my backyard. Now is a good time to gently let go of what was, and make space for what will be.

Tuesday, October 8, 2013

Pizza Bolus and my insulin pump

cheeses,fast foods,food,pizzas,slices,unhealthy,mealsAh, pizza. It's delicious. It's also one of those super tricky foods to manage with diabetes. Too much insulin up front and I'm low, then six hours later my BG is way too high. I've been trying to figure out the optimum dose for myself.

Turns out some scientists did some experimenting, too. Here's some research about how to bolus for pizza.  Does an eight hour bolus sound like a good idea? Has anyone tried it? If it works for you let me know.

Can you die from myasthenia gravis? Part 4

The four ways MG can kill you are myasthenic crisis, choking, falls and medication side effects.

capsules,healthcare,medicine,medicine bottles,Photographs,pills,vitamin e,vitamins
Since myasthenia gravis is an autoimmune disease, slowing down the immune system attack helps. It gives our damaged muscles a chance to regenerate, and prevents the immune system from destroying receptor sites.

Having a slowed down immune system makes us vulnerable to infections. Some of these infections can be fatal. Some medications also can cause cancer as a side effect. Others can cause diabetes.

I don't know what medication you are taking, so I can't tell you specific things about it. Your medication will have some kind of warning label on it. Reading it is a good idea, even if it scares you silly. At least you'll know what the risks are.

MG is a powerful disease and it takes powerful medication to control it. If your medication makes you more susceptible to infection, use your common sense:

  • Wash your hands frequently
  • Avoid people who are sick
  • Clean the handle of the grocery cart
  • Use a paper towel to open a public restroom door
  • If the food in a restaurant warming tray looks like it's been there awhile, choose something else.
  • Flu shots if your doctor recommends one
  • Hand sanitizer is your friend

What about the other side effects? The scary side effects can wreck your life long before you are diagnosed with an illness. They can keep you up at night. What if I get cancer? What if the medicine gives me leukemia? What if the medicine gives me lymphoma? Am I going to get cancer from this? What will I do if I get cancer?

These thoughts can get stuck in your mind like a recording that never shuts off. Fear can take away your quality of life almost as fast as MG did.

It took me a while to find a way to shut down the voices and regain my equilibrium. I've been a continuous chemotherapy patient since 2005. Unless a cure is found, I will be taking chemotherapy to control my MG for the rest of my life. How I deal with the fear of side effects directly impacts my quality of life.

The medication I take causes leukemia, lymphoma, lung cancer and liver failure as side effects. It can also cause a ruptured bowel and a host of other nightmare scenarios. Death from side effects is a shadow that follows me everywhere. Do I want to live in the shadow, or in the light?

For me, living in the light means acknowledging the shadow exists. The risks are real. But, so is today. Today I don't have to deal with leukemia, lymphoma, lung cancer, or liver failure. Today is a good day. Today the side effects remain a shadow and they are not my daily reality. Today is a good day. Today matters.

It isn't that I have learned to ignore the shadow. I just choose not to give it attention it doesn't deserve. I shut down the endless cycle of "what if" by changing my thinking to "when." I assume a nasty side effect is coming in the future. I assume that when it does come I will fight it with strength, dignity and honor.

Assuming my ability to deal with the worst case scenario fills my heart with courage instead of fear. Knowing that I don't have to deal with the shadow today makes the light shine brighter in my life. Today I choose to be fully alive. I choose to enjoy my life.

Today is a good day. Today matters.


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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