Small Thing, Big Victory

 

What do you get when you combine an all beef hot dog, pickle relish, chopped onions, tomatoes, sport peppers, mustard, pickles and celery salt on a steamed poppy seed bun?

 A Chicago style hot dog of course. It's a local delicacy. There's a hot dog joint across the park from my house. They make them perfectly. Putting ketchup on a hot dog is blasphemy in Chicago. At the shop by my house, anyone over the age of 12 is fined 10 cents for asking for ketchup on their hot dog. Not that I would ever do such a thing.

Well, That Explains It

Yesterday I had an appointment in an office building. I made my way to the elevator and pushed the up button. It took longer than usual for the elevator to arrive. Maybe the car was on the top floor? Eventually the doors opened and I stepped inside.

The doors closed. I listened to the elevator music and identified it as a song from 1983. I remembered some of the lyrics. The pianist played nicely. I wondered if anyone ever stopped to notice that. It was musical, lyrical, not like a robot.

Wow, I'm admiring elevator music. What is wrong with me right now? I don't like elevators. I don't like the closed space. How come this thing isn't moving? What's taking so long. I'm going to be late for my appointment. As I stood there I felt uncomfortable. Hot and sweaty. I listened to another song. And another. My heart beat fast and I felt shaky. I really do hate elevators. How long have I been in here? Why isn't this thing moving? Oh no. Is it broken?

Well, something was broken, but it wasn't the elevator. I never pushed the button for my floor! Well, that explains why it wasn't moving. Blood sugar at the time? 52 mg/dl.

Is it really possible that I got in an elevator, forgot to press the button for the floor and instead stood there listening to elevator music and admiring the musicality? At 52, all things are possible. Except for rational thought. I trapped myself in an elevator! That has to be the craziest thing I've done while low.

Doh!

Zombies, RUN!

This evening it looked like I was walking my dog. I had my leash and poop bags, walking shoes and my iPod. What I was really doing was evading hoards of zombies.




Obviously, I can't run. But, that doesn't matter. The game can be played while walking. I'm so glad. Right now the daily walk is crucial. It lowers my blood sugar and strengthens my leg muscles. I don't know if the daily walk will prevent MG from attacking my leg muscles, but it can't hurt. I won't give in to MG without a fight. Every time I go for a walk I'm fighting diabetes and MG. I might as well fight off zombies, too.

Zombies, RUN! has transformed my daily walk into an adventure. I  walk and listen to the story and when zombies are detected, I walk faster. Undead fiends growl in my headphones. I quicken my pace. I tell my dog to hurry and she trots beside me until the danger is over. Zombies evaded. Whew! More than once I have looked over my shoulder, expecting to see a real zombie chasing me in the local park.

It looks like I'm walking my dog. In reality I'm Runner 5 and I'm on a vital mission from Able Station. Oh no! Warning! Zombies detected! RUN! (Or in my case, walk away... fast!)

For more information, surf here.

Well Now There's Your Problem

I've been running high blood sugars for the past week. I tried everything to fix it. I changed how many carbs I ate. I went for a walk in the morning. I just couldn't figure out why 27 grams of carbs sent my blood sugar all the way up to 259. It didn't make any sense. Until I changed my set.

Well, now, there's your problem.

It's my first ever bent cannula. It explained why I never saw numbers below 150 and why everything I ate made my numbers go crazy. The cannula is bent. OK, I'll change my set.

After I changed my set I awaited the magical drop in blood sugar and it... didn't happen. Instead my numbers stayed the same. I did a correction bolus and went higher. How is that possible? I'll tell you how that's possible...

Ah yes, bent cannula number 2. This one gave me even more alarming numbers than the last one. So, I yanked that set and started over. 

Right now my BG is 138. Much better. New rule: When my numbers don't make sense, change my set. See, I can be taught!

Waiting for Monarsen

As a person with myasthenia gravis I rely on a drug called Mestinon to help me function. Mestinon is a little bit like insulin because neither medication is a cure. They help, but cannot heal what's wrong.  Mestinon helps muscles and nerves communicate. Since the rest of the explanation of how Mestinon works uses imaginary words like acetylcholinesterase and cholinesterase, I'm going to skip that part. I'll refer you to the Mayo Clinic instead.

The first treatment for MG was discovered by Dr. Mary Walker. She had a patient who was suffering from myasthenia gravis. Dr. Walker noticed her paralysis symptoms reminded her of curare poisoning. Since the treatment for curare poisoning at the time was physostigmine, Dr. Walker wondered if it would help her patient with myasthenia gravis. She injected her patient with physostigmine and her patient... well, it must have looked like this:



That dog has MG. Notice how quickly the symptoms reversed? That was a diagnostic drug called Tensilon, which is similar to the physostigmine Dr. Walker used on her patient. Now this was a huge advancement. A life saving advancement. In 1934.

A wheelie big decision

I've enjoyed an almost 2 year remission from MG. She's back. I'm in a progressive phase again. MG moved outward from my shoulders and is now in my facial muscles, mouth and throat. I'm having a tougher time eating. It's amazing how complex eating is. The number of muscles that need to work together in concert in order to swallow one bite of food is mind boggling. I'm having difficulty coordinating my swallowing muscles. It's hard because eating is a social experience. It is isolating to struggle with something most people consider so basic.

I know from experience it is only a matter of time before MG moves downward into my hip and thigh muscles. I have choices to make. The progression from cane, walker, to wheelchair can take as little as six weeks. I'm aware I can preserve my leg muscles by dividing my life into essential walking and non-essential walking. What types of walking matter to me most? What types matter least?

June Is Myasthenia Gravis Awareness Month

June is Myasthenia Gravis Awareness Month. I bet you didn't know that. Don't feel bad. I didn't know it either and I've had MG for 15 years. Since this is awareness month, let me give you a quick run down of the symptoms of MG.

• drooping eyelids
• blurred or double vision
• slurred speech
• difficulty chewing and swallowing
• weakness in the arms and legs
• chronic muscle fatigue
• difficulty breathing

All of these symptoms come and go. They are usually worse in the evening. Not everyone with MG has all of these symptoms. Severity varies.

OK, that's the official list. Now, let me give you the Marie Smith's Unofficial Guide to Myasthenia Gravis.

• Drooping Eyelids. Drooping Eyelids will cause you to tilt your head at unnatural angles while you drive 70 miles an hour on the freeway. To solve this take one hand off the steering wheel and use your index finger and thumb to prop open your eyelid. Much better. Now that you can see, you can now drive 80.

• Blurred or Double Vision. Blurred and or double vision is solved using the pirate method. Keep one eye closed behind an eye patch while propping the other eye lid open with your index finger and thumb. Continue driving down the freeway. When you switch the eye patch to the other eye, use your thigh to steer. Continue driving 80 miles an hour. 

• Slurred speech. Slurred speech is a misnomer. Its more like a stutter on certain letters. S is particularly hard to s-s-say. Singing along with the iPod will tire out the muscles inside your mouth. You will sound like you have marbles in your mouth. Don't worry. You are not on American Idol. You can keep singing anyway. You're in your car on the freeway so go ahead and s-s-s-sing.

• Difficulty chewing and swallowing. Again a misnomer. It's not an instant difficulty. It's more subtle. You pull into a truck stop and order chicken fried steak, because if you wanted something else you wouldn't be eating at a truck stop. You start eating and everything is just fine. Then about halfway through your meal you stop chewing. The food is still in your mouth, but you are no longer able to chew. It's weird. You think about chewing and resume chewing for a few more bites. This cycle of chew, pause, chew continues. You try to swallow and can't coordinate getting your food to the back of your mouth. You're stuck with a mouth full of food and no way to swallow. You have no choice but to go into the bathroom and spit your food in the toilet. You clear your mouth with your fingers and remember that people with myasthenia gravis live normal lives. Normal... on Saturn. You're done eating. You weren't still hungry were you?

• Weakness in arms and legs. You leave the truck stop and reach for the heavy door. You want to pull it, but you just can't seem to yank it. Frustrated you give the door a good hard pull. Your stance was so awkward that you are now holding the door open with no way of going through. At this very moment a tour bus pulls up with 93 members of the Ulysses S Grant High School Marching Band. And they all think you are holding the door open for them. Your elbow is shaking and so is your shoulder. You finally make it back to your car and don't have the strength to open the car door. You wait for your arm to reboot and open the door. You get your right foot into the car just fine but your left leg has decided it prefers the parking lot. It has no intention of getting into the car. You grab your jeans with your hands and drag your left leg into the car.

• Chronic Muscle Fatigue. You continue driving down the road and all is well. Until you end up in a construction zone full of orange cones and flashing lights. Traffic is moving one mile an hour. Inch by inch you drive along. You notice your right foot is having trouble getting off the brake. So, you switch feet. Driving with the wrong foot is no problem. This strange contortion is part of your normal life. You get through traffic and your left foot is too tired to drive any more. Your right foot, which had a nice rest is ready to go. You press the pedal down and go 80. OK, 93 because that construction put you behind schedule.

• Difficulty Breathing. Difficulty breathing is no laughing matter. This is how myasthenia gravis kills people. In order to breathe your brain sends a signal through your nervous system to the muscles around your lungs. This happens 23,000 a day. What would happen if your brain told your muscles to breathe but your muscles didn't get the message? You would stop breathing and die in minutes. Myasthenia gravis can shut down breathing muscles with little warning. Respiratory failure, choking, and falls are the leading causes of death in myasthenia gravis.

I live with MG all day every day. When my body lurches, I laugh. When a fork is too heavy to hold, I laugh. When I choke on food and cough until I vomit like I did on Thursday, I don't laugh. I pause and remember I am mortal. I remember how close I am to the edge of the cliff. I pause for a long time. And then I return to the dance. MG is serious. That does not mean I have to be. All I have to do is be... me.

Making Yogurt in the.. Oven?

When I met with the dietician she mentioned eating more yogurt. Now, I like yogurt, but I'm not a big fan of paying for it. Fortunately it is easy to make yogurt at home. No, you don't need a fancy yogurt maker. Just 2% milk, powdered milk, a small pack of Stonyfield yogurt, a little time, and a 100 watt light bulb.

Step 1: Unscrew the oven light bulb and screw in your 100 watt bulb. This needs to be an old school, non curly light bulb. Turn on the light. Do not turn on the oven, just the light.

Step 2: Pour 1 quart of organic milk into a glass mixing bowl. Stir in 2 T of Honey and 1 T vanilla, and 1/2 cup of powdered milk. Mix until blended. (Vanilla is optional.)

Step 3. Cover the glass bowl and microwave on high until it reaches 180 degrees. (Start testing temp after six minutes.)

Step 4. Once the milk is hot remove the small container of yogurt from your fridge and put it on the counter. Let the milk cool down from 180 degrees to 110 degrees. It should take an hour or so.

Step 5. Stir two heaping tablespoons of the Stonyfield yogurt into the warm milk. Stonyfield yogurt works best because it contains the most live cultures.

Step 6. Cover the warm bowl with plastic wrap. Cover the plastic wrap with a clean towel. Put it in your oven far away from the light bulb.

Step 7. Leave it in the oven, with the light on, for six to eight hours. The longer you leave it, the more tart and thick it will be.

When you come back you will have a quart of yogurt. The clear liquid on top is called whey. You can drain that off. It won't mix into the yogurt because homemade yogurt doesn't have stabilizers like guar gum, gelatin and modified food starch.

Save two tablespoons of your yogurt to start the next batch. Should be about 15 grams of carbs per cup. Enjoy!

PS. Remember to remove the 100 watt bulb before using your oven again.

Stare If You Dare

I was at 7-Eleven getting a sugar free mango Slurpee. As I stood in line I had the odd feeling someone was staring at me. I turned and noticed the man next to me was staring at my pump tubing. Normally I keep all the tubing carefully tucked under my clothes. But, I've noticed that my pump tubing is magnetically attracted to door knobs. It has a way of sneaking out from under my shirt when I move. That's what happened in the store.

The man had a puzzled look on his face, as if he was trying to figure out what the plastic tube was for. So much for diabetes being invisible. My MG is usually invisible, too. Except for when it attacks leg muscles and makes walking hard. Then I use a walker or a powerchair. Of the two I prefer the powerchair. Using a walker seems to invite rude comments. "My grandmother has the same walker you do," has to be the worst.

A Side Benefit of Walking

Apart from the health benefits of the daily walk, another benefit is finding beautiful things. My husband Steve and I walk in our local forest preserves. On Saturday we were at Timber Ridge when Steve noticed something in the grass.

 

The painted turtle was inches away from us. Instead of running away it stretched out its head and walked toward us. The turtle greeted us and let us pet her. I stroked her head gently. She was beautiful. Vivid red on her side.

After spending several minutes together the turtle left and we went on our way. A few minutes later Steve and I heard and then saw a blue grosbeak. We didn't get a good picture. They are uncommon in Northern Illinois, but not unheard of. 

Seeing two rarities in the same day would have been enough, but we left Timber Ridge and went to East Branch Forest Preserve. There we saw swans. At first I thought they were plastic bags on the lake. I've never seen swans there. Now I have.

When I walk I look for beautiful things and I find them. A turtle, and a blue grosbeak, and swans all in the same day. Side benefits of the daily walk. Or perhaps they are the main benefit. I breathe in fresh air and breathe out what's bothering me. Walking is good exercise. Good for the body and good for the soul.