Wednesday, April 30, 2014

Goodbye Old Dr. & Hello New Dr.

Last year my neurologist retired. I held back tears in the car on the way home from my last appointment. Dr. F was amazing. He made me feel secure in my ability to manage MG. When MG got beyond out of control, it was Dr. F who suggested experimenting with IV chemotherapy. Although 23 cycles of moderately high doses of chemo was hard to deal with, Dr. F always made me laugh.

After I lost my hair, I went to my appointment wearing a soft purple cap. I was self-conscious and so uncomfortable in the waiting room. It was obvious I was bald and had no eyebrows. I looked at the floor, eyes full of tears.

Dr. F came into the waiting room and said, "Hey, Baldy! C'mere!"

I started laughing. The 18 months of chemo didn't put my MG into remission like we hoped. Clearly pounding the crap out of me for another 18 months wasn't going to do it either. So, Dr. F and my oncologist got together and came up with a different plan.
Now I take chemotherapy pills at home, and I grew back my long hair. Year after year I kept seeing Dr. F and every appointment I was reassured that I was doing OK. He always said, "For the shape you're in, you're in good shape."

After he retired, he passed his practice to a new doctor, Dr. P. Today I had my first appointment with Dr. P and I was nervous. Would she be as kind and compassionate as Dr. F? I've had some doctors that were rude and unkind. Meeting a new doctor turns my insides to jelly.

Dr. P went over the notes Dr. F left her. We talked about MG and how it's going. I told her I had weak breathing last week. She asked what I did about it. Wait and take Mestinon as always. She let me know I made the right choices. Dr. P reaffirmed what Dr. F said to me over the years, "You know your body and you know what you're doing."

When a doctor treats me with respect and affirms my competence, I know I am in good hands. If I didn't know how to manage MG, I would be dead. Instead I am here, thriving and growing.

I know when I need 90 milligrams of Mestion and when I need 60. Last time I came out of surgery, and my breathing muscles didn't want to wake up, I told the nurse I needed 90 mg of Mestinon. Dr. F must have written the orders, because she didn't hesitate or argue. One and half tablets were in my hand in seconds.

My new doctor gave me the same confidence that I know what I'm doing when it comes to MG. She also offered compassion. MG is an endlessly frustrating and ridiculously hard disease to live with. It is also frustrating for doctors to treat. They can see what is wrong, but cannot fix it. Suppressing the immune system, so the antibody attack is slowed down, is the best they can do. I know taking weekly chemotherapy for the rest of my life is not optimal. My new doctor let me know that she understands.

Compassion + Knowledge + Respect for the patient = an awesome doctor. I'm glad I met you today, Dr. P. Thanks for everything.

Wednesday, April 16, 2014

Grocery Store Lows Explained

I had my second grocery store low in the last few days. Unlike my last grocery store low, I remembered I had candy in my purse. I ate my candy and expected my blood sugar to rise. I didn't count on going even lower.

When my blood sugar hit 55, I considered getting juice, but the juice was in aisle 17 and I was by aisle one. I was right next to the bakery section, so I headed over there. In the window, I saw a red velvet cupcake with a mountain of white frosting. Of course, I couldn't read the sign, or remember how to talk. So, I just pointed at it and grunted.

The lady behind the counter carefully boxed up my cupcake in a cardboard box. I brought the white box to the kiosk and paid for it. Then I headed for a table. As soon as I sat down, my mind went blank. Well, not entirely. I knew I had a cupcake. And I knew that if I ate it, the shaking, sweating, insides trembling, numb face, frightened, wow I am so low, this sucks, feeling would go away. I picked up the cardboard box and could not figure out how to open it. I turned it around several times on the table. There weren't any flaps. How does this box work? What needed was right in front of me, but I couldn't get at it.

A table away from me was a police officer. Do I ask him to open the box for me? Will he think I am insane? I felt ridiculous. Part of my brain knew asking for help was absurd. The rest of my brain was screaming, "Must Eat Sugar NOW!!!!"

The cop got up to leave.

OK, it's now or never. I said, "Excuse me, can you help me?"
He said, "What do you need?"
"My blood sugar is 42. I need to eat, but I can't open the box."
The cop did not laugh at me, or look at me like I was crazy. His eyes got really wide. The officer snatched my cupcake box and opened it in a half a second. He handed me my cupcake. "Do you need a ride to the hospital?"
"No, I just need to eat this."
He looked worried. He asked again if I needed a ride. I assured him I would be OK. He left.

I crammed frosting in my mouth with my hands. I didn't have a fork or a napkin. I just sat there shoveling frosting in my mouth like a toddler. A store staff person came running then. Apparently the officer told someone on staff that I was having low blood sugar and if I needed to go to the hospital, he would take me.

This is not good.
People are staring at me.

I told her all I needed to do was eat my cupcake and I'd be fine. She brought me a spoon. I ate the cupcake and my blood sugar boosted all the way up to 50. What The Fructose? An hour later my blood sugar rose all the way up to 61. I just ate a cupcake with approximately 88,234.03 grams of carbs. Why am I still low? This isn't working right. I expected to be approaching orbit. What is going on?

A blood sugar of 61 is still low, but I can think with a BG of 61. So, as I brushed crumbs off my face, I wondered, why do I go low in the grocery store? Then I realized something. Walking on a treadmill or outside is called exercise. Walking in a grocery store is called shopping. Only, my body doesn't know the difference between a walk outside, or in a store. I don't just walk in grocery stores. I lift heavy things like bags of dog food and cat litter, and I push a heavy cart up and down aisles. Grocery shopping is exercise. Exercise lowers blood sugar.

Depending on how much shopping I do, I can walk for 45 minutes while pushing a heavy cart. Usually I worry about MG giving me trouble in the store, but now I realize all that exercise makes me exquisitely sensitive to insulin. I'm sensitive to insulin as it is; however, adding exercise turbo charges insulin and then I go low in the store.


Next time I go shopping, I'm turning down my basal rate on my pump. Maybe that will prevent the next epic low in public. How embarrassing. I'm glad I was OK, but that totally sucked.

To the Wheaton, IL cop who helped me, thank you. Ditto to the staff at Mariano's. You all rock.

Wednesday, April 9, 2014

NYT Diabetes Article

The NYT ran an article about the expense of diabetes. You can read it Here.

As I was reading along, I came across this: "That captive audience of Type 1 diabetics has spawned lines of high-priced gadgets and disposable accouterments, borrowing business models from technology companies like Apple: Each pump and monitor requires the separate purchase of an array of items that are often brand and model specific.

A steady stream of new models and updates often offer dubious improvement: colored pumps; talking, bilingual meters; sensors reporting minute-by-minute sugar readouts."

Wait! Did the author use the word gadget to describe insulin pumps and continuous glucose monitors?

My iPhone is a gadget. My iPad is a gadget. I love them dearly. When my iPad was stolen two years ago I was inconsolable. Yet, I know that these little devices absolutely qualify as gadgets.

A gadget is nice to have, but not necessary. My insulin pump is necessary. I need it for several reasons.

1. My basal insulin needs change significantly throughout the day. My insulin needs in the afternoon are far less than morning and evening. If I took enough Lantus to keep my blood sugar steady in the morning, I was low in the afternoon. 

2. Levemir and Lantus made me feel unwell. Perhaps I have a sensitivity to the drugs. When I used them I felt a low level of sick all day. I didn't realize it was the basal insulin making me feel bad until I switched to pumping.  With Novolog only, I don't feel ill all day. When my pump broke and I used Levemir for 24 hours, that same sick feeling came back.

3. Timing insulin makes a difference in how high my blood glucose spikes after meals. Half of insulin up front, the other half over the next three hours. A quarter of insulin up front, and the rest over the next four hours... My ability to give myself the precise amount of insulin at the right times makes a difference.

4. I can control how much basal insulin I receive. I can turn it up, or down, as needed.

My pump changed my life for the better. Yes, my pump is pink. Yes, my pump has a name. XPU Mark II. (eXternal Pancreatic Unit) But, my insulin pump is not a gadget. Having my pump compared to a gadget like an iPhone was upsetting, but what got me angry was what came next in the article.

"A steady stream of new models and updates often offer dubious improvement: colored pumps; talking, bilingual meters; sensors reporting minute-by-minute sugar readouts."

I can agree pumps don't "need" colors, but the rest of that sentence is a facepalm moment.

Talking meters are necessary for people who are visually impaired.

A bilingual meter would be useful if a patient spoke one language and their doctor spoke another.

Dubious improvements and Continuous Glucose Monitors definitely do not belong in the same sentence. The use of CGM technology changed my life even more than my pump.

At 2:56 in the morning, my CGM alarmed because my blood sugar was spiking. The alarm woke me up before a disaster happened.

Sometimes it's not just the alarms that help. Sometimes the graph over a period of time tells a story. That day I put in a new pump site just before lunch. Everything went wrong after that. However, if I tested my blood sugar at 6 pm and 12 AM, I wouldn't have realized that my set wasn't working properly. A minute to minute readout showed me what time everything went crazy, allowing me to connect the dots.

If my CGM only alerted me to high blood sugar, or high patterns, it would be worth it. But, for me, what makes me so grateful is when my blood sugar goes low.

Any time my blood sugar drops low, my CGM alerts me. The lowest blood sugar I have ever recorded was >20. A blood sugar of >20 was terrifying. I never want to see that again. My CGM warns me long before I reach 20.

My CGM is powered by batteries. So is a smoke detector. No one calls a smoke detector dubious. Please don't call CGM's dubious technology. It has saved my life too many times.

Wednesday, April 2, 2014

Waiting to Inhale

It is 2:31 am. I am waiting to inhale. MG is attacking my breathing muscles, making it hard to inhale. I took some Mestinon and I am waiting for it to work, waiting to inhale. My brain is screaming at my chest muscles, BREATHE! BREATHE! Just breathe. My muscles around my lungs cannot hear what my brain is saying. So I am here, waiting to inhale.

The way myasthenia gravis weakens breathing is not like an asthma attack or a coughing fit. It's not that kind of shortness of breath. It feels like a giant hand has covered my mouth and my nose, making it hard to inhale. I can exhale just fine. I just can't pull in a normal breath. Every breath is a struggle.

I know what triggered this breathing weakness. It has been super windy in Chicagoland. I went to the store and the disabled parking spots were full. I parked far away from the store in a huge parking lot. I got out of my car and the wind filled my lungs so much I couldn't breathe. Ducking my head helped me gulp in air, but breathing around the rushing wind overwhelmed my muscles. Trouble breathing happened on the way into the store and on the way out. Now it is after two in the morning and I am here, once again, waiting to inhale.

This feels awful. I want to breathe comfortably, like you do, like anyone does. Every second my brain is screaming for air, but my muscles cannot respond. My own body is suffocating me. I want to breathe like there is still air in the world. MG pushed me out of the airlock. I want back in. I am doing my best to wait. I am pushing back the frantic feelings, remaining calm and focused. I tried to yawn. I can't breathe well enough to yawn.

Why am I blogging? Shouldn't I be calling 911?


Going to the emergency room with MG is a nightmare. 14 people in 100,000 have MG. How many people come into the local ER with MG in a week? None. A month. None. A year. None. I have an illness the emergency room doctors have never seen before. 99.99% of the time I get treated with contempt in the ER. I complain I am short of breath, but don't look upset by it. Doctors don't understand that I feel frantic and look blank.

The more trouble MG causes, the less able I am to make facial expressions. I feel dismayed and uncomfortable, and look utterly expressionless, like nothing is wrong. Except that I am mentally ill and I need a psych consult.

Hand them my medical alert id. They read it. Sometimes they mispronounce myasthenia gravis. No thanks. It's not worth the hassle. I am here at home, because I know if I rest and wait long enough my brain and lungs will synch up again. Mestinon will help if I wait. It takes about 40 minutes to work. So I am here, waiting for the medicine to work.

If I had a magic wand and could zap MG to one location in my body where it would stay for the rest of my life I would choose my legs. My legs are the least useful muscles in my body. I need to breathe and eat and speak. I need to see. I need to move my arms to play my cello. I'm not a runner, a dancer, or an athlete. I don't need my legs to live a happy, fulfilled, functional life. I love my powerchair. How odd it must sound that a good day is a wheelchair day? If I am walking that means MG is screwing up some other part of my body. Walking means I'm having a crappier day than a wheelchair day, not the other way around. Right now I want that magic wand. I want to send MG to stay in my legs forever.

I don't have a magic wand. I don't have any control over which muscle groups need to reboot. I am waiting for my breathing muscles to reboot. I am quietly sitting here and waiting to inhale.

I took a deep breath. Probably shouldn't have done that because now it is even harder to breathe. I'm frustrated and tired.

Usually it is diabetes that keeps me up at night. Blood sugar shooting high from that snack. Or dropping low because I didn't eat a snack. MG is here with me now, reminding me it hasn't gone away. Of all the things MG does to my body, choking and breathing weakness are the worst. I laugh when my arms stop moving. I crack up when my torso weakens and I lose my balance and walk at odd angles. MG makes me laugh when my speech goes haywire and I sound like Daffy Duck. Right now I can't breathe well enough to laugh. MG placed an invisible hand over my mouth and nose, breathe in through the tiny cracks. I'm getting enough air to survive, just not enough to function. It will get better. I just need to wait.

When Mestinon kicks in it works like spinach for Popeye. It is the weirdest thing to have a switch flip and suddenly muscles move again. (MG medicine looks like a miracle happened. Like this!)

Mestinon just reached my breathing muscles. I just coughed. Wow! I can cough. And I yawned. I can breathe well enough to yawn. Yawning feels good after three am. I'm not waiting to inhale. I'm all right now. My brain is speaking to my breathing muscles and my breathing muscles can hear the message. Thank you Mestinon. Thank you Dr. Mary Broadfoot Walker. Because of you I can breathe.

It feels so good to just breathe.

Mestinon makes me drool. It makes my stomach tie in knots. It makes my eyes tear up and nose run. It fills my lungs with goo. Mestinon is a drug discovered in the 1930's and has side effects to match. Right now, I don't mind. I can feel the air move through my nose, fill my lungs, expand my chest. I can breathe. It is wonderful to be able to breathe. I love how good this feels. I invite you to pause a moment and treasure the ability to breathe. Breathe in. Breathe out. Breathe in. Breathe out.


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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