My Greatest Joy

Joy benchmarks is all about pausing to celebrate life's little gifts. My greatest gift is my cello. I started playing the cello when I was nine. I was in 4th grade and there was a music fair at my school. The gym was full of instruments. We had a chance to try them all. I made a dreadful honking sound on a saxophone. I played a trumpet blast. I made an oboe sound like a dying duck.

When it came time to visit the stringed instruments, all of the girls wanted to play violin. I was about to try the violin when I heard someone play open C on a cello. That's the lowest note on a cello. Just that one note made me turn my head. I listened as he played a scale, and some Bach, and a little of bit Haydn. And something inside of my spirit jumped. I knew what I wanted to play. More than anything in the world, I wanted to play the cello.

Because of Tuesdays #2

Another week has ended and it is Toxic Tuesday again. I’m having a tough time. A work situation unexpectedly blew up. I thought I’d straightened it out, but I was wrong. Promises were broken. Trust was shattered. Now I feel lost and betrayed. I’m not going to get into the specifics, because they don’t really matter. What matters is how stress fills my normally joyful life with sh*t.

To tell you the truth, sometimes I look forward to Toxic Tuesday. Along side the chemo pills I take enough Ativan to wipe out my memories. I spend Toxic Tuesday in a mental haze. When I hurt inside, comfortably numb seems like a good trade. Chemically induced oblivion feels good for a while. It shaves the edges off. Puts me on an even keel. There is no frustration. No pain. No sorrow. But, no joy either.

Finding Courage

It’s been almost 15 years since I was diagnosed with myasthenia gravis. Fourteen years since I was diagnosed with cancer. And a whopping eight months since I was diagnosed with diabetes. All three of those have taught me the same thing: what fear feels like.

They showed me the kind of fear that starts as a small knot in my stomach. It spreads upward into my throat creating a lump so hard breathing hurts. Fear snakes around my heart making it thrash out of control. Sweat beads on my upper lip. I know what fear feels like.


Waiting for the outcome of the next test and worrying myself sick. What if the cancer comes back? What if MG goes out of control and I can’t breathe? What if diabetes makes me go blind? Or lose my feet? Or… Oh yes. I know what fear feels like.

I also know what courage feels like. Fear throws every kind of question at me, warning me of potential battles. Courage reminds me of where I have already been. Courage reminds me of battles I have fought, and scars I have earned.

My New Dexcom Is Coming Today

I’m like a little kid waiting for Santa right now. According to the FedEx tracking website my package is on a truck and on its way to my house. Less than a month ago I had never heard of continuous glucose monitoring. I read other people’s d-blogs and I’m blown away. They know so much. I am a newbie when it comes to diabetes. I thought I was getting a handle on things, until I spent a week with a Dexcom in my pocket.

Feeling Taxed

I just finished my taxes. Staring at my computer screen and looking at all the different numbers has made my brain ache. I hate doing my taxes!

To determine if you are eligible for the taxed beyond belief deduction, subtract line 23(a) from line 23(b), divide the total by the square root of 7, and add the number of fish sticks you ate in April 1974.

Every year I get the same big headache. The only good news is I'm done. My federal and state taxes have been e-filed. That was stressful. It's time to relax. No, it's time to kick back and laugh. 





Laughter. It's good medicine. (Even if I can't deduct all of my medical expenses. Grr.)

A Tip For Dealing With Double Vision

One of the more irritating symptoms of MG and other conditions that affect our eye muscles is double vision. Seeing two overlapping images gives me a headache and makes me dizzy. The medical literature all says the same thing:

• "Wear an eye patch. If you have double vision, using an eye patch can help relieve this problem."

Yes, an eye patch relieves the problem of double vision -- by exchanging it with this problem:

Because of Tuesdays: Part 1

It’s Tuesday and like every Tuesday I feel chemo sick. MG is a powerful disease and it takes powerful medicines to knock it down. I’ve been taking weekly chemotherapy pills for five years. I don’t get to stop treatment until a cure is found.

Dexcom Trial: Week In Review

It's been a week since I got to test drive a Dexcom Continuous Glucose Monitor. I've learned a lot about what happens between those finger sticks. According to my meter, yesterday’s readings were:

Before breakfast 106
After breakfast 156
Before Lunch 100
After Lunch 174
Before Dinner 100
After Dinner 126
Before bedtime snack 98

All of those readings are below the 180 threshold. Should I be congratulating myself? Let’s see what Dexcom has to say about that. Ahem...

A Service Dog Celebration

My service dog is on the couch next to me. Honey went to the groomer yesterday and came back soft and fluffy. She is nine now. We’ve been together since she was eight weeks old.

I didn’t realize I was getting a service dog puppy. I honestly thought I was getting a new pet. Until Honey decided she wanted to be something more.

February Blues

The DSMA Blog Carnival this month is about what can we do to help stop depression from hitting our community during the winter months.

February can be a depressing month. Right now it is 40 degrees and drizzling in Chicago. When I took the dog out, I remembered the last time I was depressed. It felt like it was cold and drizzling inside my spirit.

Low Blood Sugar: When Fifty Ain't Nifty

Last night while I was sleeping, my blood sugar dropped below 50. I know because my Dexcom recorded the drop. Unfortunately I didn't wake up. Instead I woke up a few hours later feeling sweaty and confused. My blood sugar read 112. Dexcom no doubt alarmed about the drop but I didn't hear it.

Dexcom Seven First Impressions

Just in time for Valentine’s Day I have a new love in my life. It’s small, electronic and taped to my arm right now. This week I am trying out a Dexcom Continuous Glucose Monitor and I am in love. I love electronic gadgets anyway, but this one is just plain cool. It has a sensor that takes a blood glucose reading every five minutes. I thought it would hurt when the nurse put it on, and I was scared. Fortunately it didn't hurt at all. It doesn't hurt now, either. I notice the pull of the tape sometimes, but nothing else.

My endo recommended I try out a CGM because I have wild blood sugars overnight. Sometimes I go to bed with a normal reading but wake up with my blood glucose reading 197. Sometimes I wake up drenched in sweat, because I went low in my sleep and didn't wake up. Every night is an adventure and I’m not sleeping well.

I’ve looked for a pattern and I haven’t found one. Maybe this monitor will help me find a pattern. It already alerted me to five low blood sugars I wouldn’t have noticed without it. It also confirmed my suspicion: I can go low in the middle of a meal.

It happened at lunch today. I tested my blood sugar and shot up insulin after my food was in front of me. I started eating and felt shaky. Dexcom went off. BUZZZ! LOW! That’s what I thought was happening. Why am I going low while eating? I figured out the answer: too much insulin upfront. Now the easy solution to this problem would be to give myself part of my insulin before I eat and part of the dose after I eat. But that would be seven shots a day and I’m brave, but not that brave. I can see the future and it involves a pump.

Still, I think I’m in love with my little friend here. It beeps and buzzes to warn me. I think I’m naming it R2D2.

How is Myasthenia Gravis Diagnosed?

One definitive test for myasthenia gravis is a Tensilon Test.  It involves an injection of a medication called Tensilon, also called edrophonium. The technical specs behind how Tensilon works uses imaginary words like acetylcholine and acetylcholinesterase. Since twenty letter words generally take twenty sentences to explain, I'll simplify this. If someone has MG, Tensilon improves how muscles and nerves communicate.

When the test is positive, the results can be dramatic. How dramatic? Well, watch the video.

An Ounce of Prevention

After I almost injected the wrong insulin dose, I've been on edge. I know how absentminded I am and I also know this is not going to change. I tried to fix it for 35 years. Then I gave up and just accepted that part of myself. Some people find it easy to focus on what they are doing, and other people don't. I'm not always aware of what I am looking at.

Last spring, while in a local forest preserve, my photographer husband said to me, "That's a beautiful tree."
"What tree?"
"The one you're standing under."
Less than three inches away from my nose was a tree in full bloom. Pale pink flowers covered every branch, and I did not see the tree. If Steve hadn't said something, I never would have noticed.

Exercising With MG? Yes, Wii Do!

When I was in the hospital after my diabetes diagnosis one of the doctors told me how important it is to exercise. Exercise helps move insulin into cells. Starting an exercise program sounded like a good idea, except I have myasthenia gravis. MG makes it hard to move.

Sick Puppy

I don't feel well tonight. My stomach is bothering me. Guess I'm a sick puppy. So, here's a picture of Honey when she was a puppy.

Be well. More tomorrow.

Another Joy Benchmark

The mission of Joy Benchmarks is remembering to find joy in the smallest things. Benchmarks are important. They are how we measure things that are difficult to quantify like greatness and success. Most of the time we reach upward toward benchmarks. Joy isn’t like that. Joy benchmarks are set low.

Stress!

I had a stressful weekend. A long term freelance writing project spun out of control and dragged me along for the ride. 

I’ve discovered that stress makes my blood sugar do strange things. On Saturday it shot up from 113 to 228 and beyond. The rocketing blood sugar made my head throb. But, what really scared me was the throbbing inside my eyes.

What Does Myasthenia Gravis Feel Like?

For me, one of the hardest parts of having a rare disease is no one else knows what I'm going through. It is profoundly lonely to have a chronic illness no one has ever heard of. I've often wanted to flick a switch and give other people MG for 24 hours. I want them to have a taste of it, to allow people to understand what it feels like to have a body that works, and doesn't work, and works again.

But of course, I don't have a magic switch.

#dsma

Tonight I discovered #dsma on Twitter.  Diabetes social media advocacy. It is an online community for people with diabetes that meets at 9:00 eastern.