Friday, November 22, 2013

Insulin for Life

I am a diabetic. I take insulin for life. Without it, I'll die. Getting insulin is easy for me. All I have to do to get more is trot down the street to Walgreens. Diabetes isn't easy for me to live with, but getting the insulin I need is as simple and easy as that. November is Diabetes Awareness Month. I write this blog to document what life is like with myasthenia gravis and diabetes. But, even on my hardest days, I always have access to insulin that lets me live and thrive.

After the tornadoes hit my state this week, my first thought was to my brothers and sisters living with diabetes. Even with houses destroyed and neighborhoods ruined, people living with diabetes in Illinois still have access to the supplies they need just because they live in the USA. Too many people aren't as fortunate.

For me, diabetes is frustrating, annoying, frightening, and upsetting. But, I never have to worry about this happening to me and my family:


Just like Sujata, adding insulin to my life felt like a miracle. I went from being deathly sick to feeling immesurably better with just with a few drops of insulin a day. Insulin matters so much to me, I want to share the gift with others. That's why I support Insulin for Life.

As you know, Typhoon Haiyan slammed into the Philippines. Unlike my brothers and sisters in downstate Illinois, access to insulin and strips is hard to come by after the storm. Insulin For Life is holding an appeal to deliver needed supplies to the Philippines. They need your help. You can donate on their website right here: http://www.insulinforlife.org/

Wednesday, November 20, 2013

Low Blood Sugar Response Squad

My kittens have made up for munching through my insulin pump tubing in a big way. Last night my Dexcom went off with the 55 low alarm. I'm a deep sleeper. Sometimes I sleep through Dexcom alarms. I wish there was a Shrieking Banshee mode, an alarm so loud it would wake the neighbors, but I would sleep through that, too. The 55 low alarm didn't wake me up, but it did wake up Fresh Air and Sunshine.

My kittens climbed on me and that woke me up. They started meowing and walked around my head until I sat up. Both kittens stayed with me while I treated the low, which took about half an hour. Low blood sugars at night scare me. Being low is disorienting any time of day, but being jarred out of sleep makes it worse.

Fresh Air and Sunshine stayed with me the whole time. They were my low blood sugar response squad, and I was so glad they were there.

Sunday, November 17, 2013

Are My Kittens Trying To Kill Me?

Sometimes when I get a high blood sugar, I know exactly went wrong. I ate more carbs than I expected. Or, I planned on giving myself an insulin bolus after a meal, and totally forgot about it. When this happens, I correct and move on.

Other times, a high BG comes as a total surprise. These high blood sugars take a little detective work to figure out. Is the insulin in my pump bad? Is my set faulty? Did I get my pump tubing twisted on a door knob and yank out my set... again?

Recently I had an experience like that. I woke up to a shrieking Dexcom. I tested and my blood sugar was 303. What the Fructose? I didn't even have a snack. I reached down to check my pump tubing and found it was split completely in half.



That did not happen when I rolled over on my pump tubing. This was no accident. While I was sleeping someone soft, fuzzy, and cuddly deliberately chewed through my insulin pump tubing. I have a paranoid feeling that my kittens are trying to kill me.

Let's have a look at our two suspects.

Was it dear little Sunshine? Look at her innocent little face. She is gentle and sweet. Would she eat through an insulin pump tube? Is this the face of an attempted murderer?



Or was it Fresh Air? He's as sweet as a gumdrop dipped in honey and rolled in powdered sugar. Aw, look at him. He's chewing on a little rag toy. Would Fresh Air try to kill me?



The answer is, yes. Yes, they are trying to kill me. My kittens have discovered I keep my insulin pump in my pocket. Every chance they get, Fresh Air and Sunshine dig at my pocket to get at my pump tubing. When I'm awake I redirect them to something appropriate to play with. There's nothing I can do when I am asleep.

Right before I fall asleep, the two of them conspire. They speak out their plans in whisper soft purrs. I used to think purring was a sign of contentment, but now I think that rhythmic sound is designed to induce sleep in their human prey. Purr. Purr. Go to sleep. All is well. Go to sleep. I'm not trying to kill you. Relax. That's it. Good Marie. Now, let's eat her insulin pump tubing! Duo Kitten Tag Team Activate!

Tonight I'm going to curl my excess tubing into a coil and tape it to my body with Flexifix. If anyone has any other suggestions on how to kitten proof an insulin pump, can you let me know? Thanks.

Monday, November 11, 2013

What The Fructose?

This morning I woke up and my fasting BG was over 200. What the Fructose? My morning BG is never that high. I got an insulin pump because of serious dawn phenomenon that couldn't be managed with Levemir or Lantus.

Dawn Phenomenon is a rise in blood sugar that occurs between 4 and 8 AM.

From the American Diabetes Association:
"Between 4 a.m. and 8 a.m., the body increases the production of certain hormones. These
natural body chemicals suppress the activity of insulin, a hormone that transports glucose
into cells to use for energy and reduces blood sugar levels.

The hormones include:

Growth hormone
Cortisol
Catecholamines
Glucagon
Epinephrine (adrenaline)

These hormones trigger the liver to release enough glucose to give the body the energy
to wake up. In non-diabetic people, the body responds to the excess glucose that
accumulates as a result of this process by producing insulin. The insulin then moves the
excess glucose into the cells. However, people with diabetes either fail to produce insulin
or cannot properly use the insulin that is available. As a result, glucose continues to rise
to abnormally high levels (hyperglycemia)" 


Since I got my insulin pump I have never had a fasting blood sugar over 200. Until today. What the Fructose is going on? I looked at my insulin pump tubing a little more closely and saw little punctures in it. What could have caused something like that.

Suspect A: Sunshine Smith

 

Or was it Suspect B: Fresh Air Smith

 

I took these mugshots this morning. Sunshine is fascinated with my insulin pump tubing, so I'm thinking she is responsible. Either way, they have the right to remain adorable. Any infractions will not be held against them. They have the right to be kittens and I'm the dummy who let my pump get too close to their little kitten teeth. 

I sleep with my insulin pump stuffed inside a stuffed ladybug. Tomorrow night I'll have to secure the tubing a little better. Speaking of better, I'm doing better. Adding two lively kittens has ruined my sleep, but improved my mental health, and that is making all the difference. Joy!

Monday, November 4, 2013

Better Times Ahead

Yesterday was a tough day. We went to a memorial service for my husband's cousin, Russ. It was good to be with the Smith side of the family, even though I was sad. I love them all a ton. Saying goodbye is never easy, especially two goodbyes in one day. When we came home from the memorial service, our 16-year-old cat Neptune crashed from kidney failure. Half an hour after getting home I was at the vet. Neptune was put to sleep around 5 pm. It was the kindest thing I could do for her, but it was hard.

I felt so empty. For the first time in 25 years, I didn't have a cat to love. I mentioned in my last post that we've had two deaths in the family this year.  It's been dark inside our lives. What my family needed today was a little bit of fresh air and sunshine.

So...

I'd like you to meet the two newest members of the Smith Family...



This is Fresh Air, my first tuxedo cat. He has quite a dapper mustache.


And this is Sunshine. She is our lucky black cat.


These two are bringing new life and new joy to our family. They are former barn cats. A professional kitten cuddler brings just weaned barn cats into her home, cuddles them, and socializes them, so they make excellent pets. Fresh Air purrs as soon as I touch him. Sunshine takes about three seconds longer, but she has a lovely purr. They are brother and sister and about 12-weeks-old. They've already figured out how to get on the bed, and how to raise plenty of chaos, and make us laugh. It was very hard to get these pictures because these kitties are built for speed.

On a day when I didn't think anything would make me smile, I needed a little Fresh Air and Sunshine to brighten up my day. I hope they brightened up your day, too.



Friday, November 1, 2013

Having a hard time


I know it's diabetes awareness month, but I'm having a hard time. Yesterday I found out my husband's cousin died. Russ was 45 and very dear to our family. He had cancer and fought hard. My heart hurts for his mom and brother and sisters. I close my eyes and I see his smile. Russ had a wonderful way of being in the world and it's not the same without him. We always celebrated Thanksgiving with cousin Laurie and her baby brother Russ was always there. Now there will be a vacant chair.

At the same time my 16-year-old cat is dying. She's skinny and stopped eating. I've had cats for 25 years and I've been down this sad road before. I'm in the middle of trying to decide to have my cat euthanized, or just let her pass away on her heating pad. Neptune doesn't appear to be in pain. She's just weak and sleeps all the time.

Part of me thinks the humane thing to do is take her to the vet and have her put to sleep. The other part of me has dealt with too much death this year already. My mother-in-law died in July, and Russ died yesterday. Now Neptune... I'm lost in the weeds today, unable to tell if I'm heartbroken over my mother-in-law, Russ or my sweet cat. It's all a lump of sadness.

Diabetes awareness month and National Novel Writing Month are both in November. I always wanted to try the NaNoWriMo challenge and perhaps I still will. I don't know how much help I can be in promoting diabetes awareness right now, except to say that emotions impact my blood sugar as much, or even more than, food sometimes. Grief is a roller coaster ride.

The diabetes management skills I'm practicing now are:

  • Remembering to test, even when I don't feel like it.
  • Remembering to eat, even when I don't feel like it.
  • Remembering to bolus, maintain my pump sites, and my pump.
  • Remembering to exercise, especially when I don't feel like it.
  • Remembering to be kind to myself and my family, because sometimes life punches like a fist in the face, and we need to help one another fend off the blows.
I am in tears and I can't see my computer. More later.


 


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.

Thursday, September 26, 2013

Can you die from myasthenia gravis? Part 3

In Part 1 and Part 2, I discussed two ways myasthenia gravis can prove fatal. Here is the third: falls.

Myasthenia gravis makes walking unsteady. Ha! Unsteady. The truth is, MG can turn you into a card carrying member of the Monty Python Ministry of Silly Walks. I have several silly walks, depending which muscle group is offline.

If MG played fair, it would weaken muscles symmetrically, which it doesn't. It would weaken the same muscle groups every day so you could adapt, which it doesn't. MG is not fair.

The more you move, the weaker you get. This has got to be the most frustrating aspect of life with MG. People move all the time. We blink. We use spoons. We reach for things and pick them up. Before I had MG I could move without thinking about it. Now, I think things through.

The way MG weakens muscles makes falling particularly dangerous. MG tricks you into thinking you're fine. Walking begins like it always does, but then something shifts. A muscle in your trunk goes offline and you lose your balance. Or, your left thigh muscle is no longer operating within design specifications and has switched off. Your entire center of gravity is thrown off, and down you go.

This can happen without warning. I used to fall a lot. Then I got some help.


Honey chose to be a service dog. When she was about eight months old, we went for a walk. Suddenly Honey started pulling, dragging me toward a park bench. I sat down, and she sat at my feet. Not wanting to sit down, I got back up. Honey jumped up and pushed me back down on the bench. She did this about four times before I decided to pay attention to how I was feeling. My leg muscles felt like rubber bands. Honey knew my muscles were weak before I did.

She learned to give me a specific look that says, "Mom, sit down." I learned that she was right.  Honey taught me how to pay attention to little warning signs a fall is coming. When I start to stumble, it's time to sit down. When I feel unsteady, I need to rest. Honey is retired now. She spends her time hanging out with me and being my friend. She's 11 now and has earned her rest, but I can't thank her enough for what she taught me about falls.

Cuing into your own body is key here. What do weakening leg muscles feel like? What are the early warning signals? No one else can tell you what your MG feels like. Your own wisdom will protect you from falls, and so can tools like canes, crutches, walkers and powerchairs. I have all of them and I use all of them, depending on how my legs are working on a given day.

The hardest part about using tools is mental. Using a tool identifies you as "disabled." That outward sign of an inner reality may be hard to take. Questions from people, "Why are you using that? You don't really need that thing, do you? I saw you walking yesterday and you were doing fine." All of this sucks. MG is rare. Almost no one has it and most people have never heard of it. What do you mean the more you move the weaker you get? That's just crazy. You know what you need? A good exercise program. My Aunt Sadie had something like that, but she took these herbs...

Facepalm!

Sometimes I wish I had a big, flashing "Stop Talking. You're Not Helping!" sign on my forehead. Click a button and that sucker would light up. Most people don't know what you're going through, and they won't get it. What I don't want for you, or anyone else with a new physical disability, is to decide the words from strangers matter more than your own safety. If you need a tool to prevent falls, use one. Fear of what other people will think, or fear that you're making a big deal out of nothing, and refusing to use tools, is one way myasthenia gravis can kill you.

Pay attention on stairs, wet surfaces, transitions from rug to hard floor, ladders and bathtubs. I had to stop taking baths after I realized I can't get out of a bathtub safely. I need to use my arms to lift myself up. Only, being me I forgot this. I knocked my head hard enough to see stars when I slipped.

Be careful when you bend over to pick something up. Ask for help when you need it. Or, maybe you can find a furry friend to be by your side. Service dogs can pick up a paperclip and hand it to you. A service dog can stop you from falling and might even save your life. For more information about service dogs, click here.






Thursday, September 19, 2013

Can you die from myasthenia gravis? Part 2

Can you die from myasthenia gravis? Part two

In my last post, I told you about myasthenic crisis. For newly diagnosed people, MG crisis is a terrifying complication. But, I actually fear choking to death far more than a myasthenic crisis.

2.) Choking

If myasthenia gravis weakens the muscles in your mouth, you will slur your speech. Because I am extra talented, I actually have two different types of slurred speech. The first one is when my tongue extends past my teeth and flattens. I sound like Sylvester the Cat. The second way I slur my speech is when my tongue won’t extend to my teeth. Then I sound like I’m drunk.
Signs > First Aid > First Aid, Injury, Emergency
On days when my speech is weak, that is a red flag warning that my ability to swallow is compromised. I have a weak gag reflex, so I can't always know I've reverse engineered a swallow until I have food in my lungs. I feel like I waterboarded myself and cough until I puke. Choking to death is a possibility, so I have learned to be cautious.

On bad eating days, I choose my foods carefully. I don't eat mixed textured foods. What in the *#$% is a mixed textured food? Anything that is a thin liquid and a solid together, like milk and cereal, noodles and soup. My mouth can either swallow the liquids, or the solids, but not both. Ripe fruit is out of the question.

The real danger is a piece of food getting past my weak gag reflex and cutting off my airway. Meat, popcorn, corn, peas, grapes, hot dogs, anything with little parts, careful. Foods that shatter into crumbs when you bite them like granola bars, and crackers, careful. Even if choking doesn't cut off my airway, getting bits of food in my lungs can cause aspiration pneumonia.  If aspiration pneumonia happens, see cause of death #1.

Eating with MG is tricky. Some things I think will be easy to eat, like mashed potatoes, can be hard because I can't move them around my mouth. Whipped cream has the same problem. It’s fluffy. It melts into a completely different texture. My tongue tends to push it out of my mouth instead of swallowing it. Yogurt has the same problem. Sauces help foods stick together so swallowing is easier. However, nothing helps more than your own inner wisdom. Look at your plate, determine what you could possibly choke on, and eat that first when you have more energy during the meal. Your ability to eat will diminish later in the meal.

On a day when you are slurring your speech, choose your foods wisely. Nothing runny, or sticky, or hard. I have survived on Boost drinks and Boost Nutritional Pudding for weeks. Then MG got bored attacking my mouth and moved on to my legs.

Remember, no matter what crazy thing MG is doing, chances are it will relent at some point. The only thing stable about life with MG is how unstable it is. The good news is, we’re smart enough to outsmart it.

Wednesday, September 18, 2013

Can you die from myasthenia gravis?

People have been asking me, "Can you die from myasthenia gravis?" Most of these people are surfing the internet at 3:19 in the morning. They were just diagnosed with MG and are looking for someone who knows what they are going through. If this is you, make yourself a cup of cocoa and have a seat. I've had MG for 15 years. I'm still here. In 15 years chances are you'll still be here, too. Here's a hug.

The answer to the question, "Can you die from myasthenia gravis?" is yes, but probably not. It's the same answer to the question, "Can you die from driving on the freeway?" Yes, but probably not.

The four ways myasthenia gravis can be fatal are:

1.) Severe respiratory weakness
2.) Choking
3.) Falls
4.) Medication side-effects

Because people are asking about it, I'll be blogging about these one at a time over the next few days. Let's start with the scary one: respiratory failure.

Severe respiratory weakness in myasthenia gravis can happen. This is called a myasthenic crisis and it can be deadly without treatment. A crisis happens when MG attacks the muscles involved in breathing. It feels like someone covered your mouth and nose with their hand and you just can't breathe in.

My last crisis was in 2005. I blacked out while practicing the cello. Darn you Popper Etude Number 36! That piece of music is one of the funnest things to play on the cello, but I got out of breath playing it. I'm lucky I didn't drop my cello.

I was so weak I couldn't cry out that I needed help. I couldn't walk from the practice room to the living room, so I crawled. My family called an ambulance and I spent a few days in the hospital. It was no fun at all.

But, my crisis didn't come out of nowhere. In the weeks leading up to it, my MG symptoms increased dramatically. Only, I was too dumb to know where I was headed. MG symptoms fluctuate. Some days are better than others. What I learned to look for was a pattern. Bad days, followed by worse days, followed by bedridden days, are something I pay attention to. If MG is sliding, I take that as a warning sign.

What causes a crisis? Infections can trigger them, especially respiratory infections. Coughing makes chest muscles weaker. So do fevers. Hot weather can weaken muscles. Surgery, trauma (including emotional trauma) can weaken breathing muscles.

If you are afraid of a crisis, and can't sleep right now, here's a suggestion. Learn how MG "normally" feels in your body, so you can know if something changed. You don't have to be paranoid, but aware. Think of monitoring your MG like monitoring your driving on a freeway. You know how the freeway is supposed to feel. But, sometimes there is bad weather, or that crazy person texting, or that lunatic in the truck. Signaling left and getting into the right lane? Are you insane? Driving closer to me doesn't make my car go faster, you know. What are you a snow plow? Get off my tail, buddy. Look at this guy. The long thin pedal is the accelerator you jerk! The brake pedal is not the clutch. Quit riding it. Hey you, with the bumper sticker, forget world peace. Visualize using your turn signal! That it'd be the change I wish to see in the world.

Wait. What were we talking about? Oh yeah. Sorry. Tangent got lose again. Here Tangent. Here boy. Back into your kennel. Good Tangent.

Ahem.

With MG you know how you feel on a "normal" day. If you feel worse than you have ever felt, if breathing feels like someone stuck a plastic bag over your face, if you feel like crawling instead of walking, call an ambulance. Don't, ahem, ignore all this and do something dumb like, oh I dunno... practice the cello. Darn you Popper No. 36.


Sunday, September 15, 2013

Bolus insulin before or after meals?

One of my favorite moments on my vacation was meeting Diane. Diane is... Oh, let me see if I can get this right. She is my husband's aunt's sister-in-law. We were all vacationing together up in Wisconsin. Diane has Type 1 diabetes and uses a pink Medronic pump




My ping looks bigger, but it cracked me up that we both had pink pumps.

Diane boluses after meals. I bolus before. I was wondering if there is any advantage to bolusing afterward? Do any of you bolus after?

I was taught to test, bolus, eat. I just found it interesting that Diane does it differently. Either way, it was neat spending time with someone else who speaks my language. Carb counting with friends is the best way to go.

Thursday, September 12, 2013

Rest is a verb

For the past few months I have been finishing my book and preparing for a performance at the same time. I've been pushing myself hard to get it all done. I performed on Tuesday and it was fun. It felt good to play my cello for people again.

LadderThis year I feel like I've been climbing stairs without a break. When I have a project to write, it consumes me. It is the first thing on my mind when I wake up, and the last thing on my mind when I go to sleep. If I sleep at all.

In the middle of a creative project I have trouble sleeping. Falling asleep is no problem, but I just can't stay asleep. My mind is active, running up internal stairs.

It isn't unusual for me to work 16 hour days, seven days a week when I am actively creating. The fires of creation drive me to go, go, go, go all the time. I am aware of how unhealthy this is. I just don't know where to find the off switch. This is nothing new.

I was driven as a kid. I woke up before school and practiced scales, etudes, and Bach. Then I went to orchestra rehearsal and school. During study hall I practiced sonatas. After school I practiced orchestra music and concertos before dinner. After dinner I practiced concertos until my mom asked if I did my homework. Homework? CRAP! I'd put my cello down and do my homework. Well, most of it anyway. The next morning, I was up and practicing at dawn again. Nine hours a day during the school week, I practiced the cello.

I always put in at least 20 hours a weekend practicing. My goal was 24 hours of practicing in a weekend. Stacks and stacks of empty Diet Pepsi cans piled up by my cello endpin. I didn't stop to eat unless forced to. I just practiced. No one told me to practice. They told me to stop! But, even when I wasn't playing the cello, I was practicing it in my mind. I was driven by an internal creative need, one I don't understand, but still feel all the time. When MG weakened my arms and playing the cello became difficult, I rediscovered writing. Now writing consumes me the same way practicing used to. The only off switch I have found is finishing a project.

 Life Etudes is finished.

Maybe someday I will discover a balance between creating and resting. Then again, I've been saying that to myself for the past 30 years! My creative mind seems to have two speeds: 300 miles an hour and off. Right now, off feels good. Rest is a verb. Rest is an active thing, an important thing. A few days ago my husband and I went on a vacation to Wisconsin. We celebrated our 24th anniversary. We also rested.



No phone. No internet.


Just tall trees and sunlight by day, and a billion stars at night.


I traveled across a bridge from frenzied activity to quiet reflection.


I found a magical spot to cool the fires of creation.



A chance to refuel the inner wellspring.

And dream of what to create next.


________________________
To learn more about my new book, please CLICK HERE. Thanks!




Thursday, September 5, 2013

Memories Matter


The memories always linger...

I watched this video about Fred Stobaugh this week. If you haven't seen it yet, take a look. It's a video about a song Fred wrote for his wife Lorraine, who passed away earlier this year. They were together for 75 years.




My husband's parents were married for 65 years before his father passed away. My parents were married for almost 50 years before my mother passed away. The loss of my mother, and Steve's parents is rough sometimes. Steve's mom died on July 11 this year. Steve's birthday was yesterday and it was the first time in his life his mother didn't wish him a happy birthday.

The hard truth is life ends. The beautiful truth is, love remains in our memories.

On a far happier note, our family just celebrated our favorite aunt and uncle's 60th anniversary this summer. We had a family reunion party that I will never forget.

Those strong examples of long term marriage have helped my husband and I weather many storms. On Monday, September 9th, Steve and I celebrate our 24th anniversary.

This song moved us to tears. It reminded us to pause and treasure the time we have together. I'm glad for all the memories we've made over the last 24 years. I'm also glad that we are still enjoying our life's song together.

For our anniversary this year, Steve and I are going to the little cottage by the lake where we spent our honeymoon. Just like we did 24 years ago, we'll be making memories under the stars, memories that will linger on.

Thank you Fred for sharing this song with us. Thank you Green Shoe Studio for making it all happen.

Thursday, August 29, 2013

The Worst Disabled Parking Abuse Ever

accessibility,assistance,communities,disabilities,Fotolia,parking spaces,pavement,sidewalks,signs,transportation,bricks wall,wheelchairsDon't you hate it when you see a so-called disabled person park their car right next to the store in a crowded lot? Then they just get out of the car and waltz their way into the store. They don't even have a limp. What gives with that?

Those parking placards are too easy to get and people abuse them all the time. Nothing is wrong with this person, and yet they get to park in a special spot. They aren't disabled. Disabilities are obvious.

You know what this person needs? Someone to set them straight. Maybe a note on the windshield, letting the driver know she's a bi#ch. Or a hard stare. Or even better, a loud confrontation.

 "You shouldn't be parking there. There's nothing wrong with you. I ought to report you to the police."

Yeah, that's exactly what you should...

NOT
EVER
DO.

Not all disabilities are obvious. There are dozens Invisible Disabilities. I don't look disabled all the time, but I am. Myasthenia gravis is so rare almost no one has it. Picture all the fans at the Superbowl. Imagine 14 of them stood up and waved at the camera. That is how many people have MG out of a hundred thousand.

MG can turn my muscles on, and off, without much warning. Heat makes my muscles weaken faster. I may have no problem walking into a store, but on the way out of the store I might be stumbling behind a shopping cart. Or, I might still be able to walk just fine. I don't know how my body is going to function ten minutes from now. Everything might be wonderful, or I might be drooling, struggling to breathe and crawling on my hands and knees.

Just because I can walk right now does not mean I will be able to walk in ten minutes. I have to adapt my entire life around MG. Sometimes being able to park near the store exit saves me pain and struggle.

Since MG is rare, few people know what it feels like to live with it. Having MG feels like being dipped in invisible tar. Every move I make is through this awful goo that no one can feel but me. I don't "look sick," except for when I do. When I do look sick, my body turns limp and I can't hardly move. The problem is, I have no control over when MG is going to take my strength away. It might be in the middle of the store when I'm shopping, and I always have to be prepared for that. So, yeah, I park in disabled parking, not because I am lazy or faking, but because I have a disability. You just can't see it right now. Being rude to me in the parking lot isn't going to make me less disabled. It is just going to get us both angry. I hate feeling angry more than I hate MG. There has to be a better way.

Here's a tip for you:

If you have to make an assumption about someone with a disabled parking placard, assume they need your compassion, because invisible or visible, disability is hard to live with.

Remember: the worst disabled parking abuse ever is when able bodied people jump to conclusions about who has a disability and who doesn't. Just because you can't see it doesn't mean it isn't there.

Monday, August 26, 2013

Exciting News X2

I have exciting news2 and I have the DOC to thank for it. First bit of news is, I have a cello performance scheduled for September 10th at DuPage Medical Group in Glen Ellyn. I'll be sharing my solo cello compositions, and my crazy health adventures, woven together into a one-woman performance called A New Beginning.

I've been performing about my health adventures for several years. My first show was called Weaving: An Inspirational Journey. In Weaving I shared how I was diagnosed with MG, and cancer, and what life is like as a disabled person. During the show I demystified disability through humor, and truth, and music. Between short talks, I played 10 solo cello compositions I composed. Weaving was well received.

Marie Smith is a remarkable woman.  She plays cello artfully.  She composes
evocative music.  And she tells an incredible  story of overcoming two
life-threatening illnesses.  She joins cello, original music, and her story
into a powerful, even mythic performance: Weaving: An Inspirational
Journey.
 
... It's a triumph of the human spirit that from which every
person will benefit.

Weaving is more than good, it's extraordinary."

                                   — Rev. Edward Searl, Unitarian Church of Hinsdale


"Weaving" is a culmination of talent, humor, music and living life.  There really is no better combination than that, and Marie brings it out in each of us.

                                 — Hannah Alkire, cellist in Acoustic Eidolon

From the very beginning, I found myself on a visual journey of a life that has walked through the valley and the shadows and survived.  The narration of Marie's journey was so descriptive, moving, and involved that I felt caught up in each moment and felt like I was able to feel every experience personally. ...May the wind always be at your back. Thank you for sharing your life pages with us.

                             — Linda Eastman, Diversity Days in La Grange Illinois Co-Chair


After this morning, I left church wishing that everyone (in the world!) could hear you speak and hear your soulful music.

                                   — Holly Lydigsen

Dear Marie,


I am not a musician.

I am not a concert attendee.

I am not a cello enthusiast....


BUT MY WIFE AND I THOROUGHLY ENJOYED YOUR PLAYING THE CELLO AND YOUR LIFE STORY. WE HOPE YOU CONTINUE TO SHARE YOUR TALENTS WITH OTHERS.  MAY GOD CONTINUE TO BLESS YOU AND YOURS.

                                                                  — Milt & Rosalie Honel
 
Well, I am continuing to share my talents with others, thanks to the DOC. For two years my cello was broken and I tried to save money for repairs, but the chronic illness dragon kept stealing it. I didn't think I would ever play Sir Barclay again, until the DOC reached out and helped me raise enough money to fix my cello. You can read about how I got my cello fixed, and my cello advocacy at diabetesmine.com

Ever since my cello was repaired, my goal has been to share what I've learned as a person living with diabetes and myasthenia gravis. I want to use music, and humor, and honesty to bring healing and hope to people. Tuesday September 10th I get a chance to be the cello bard again. @Cellobard is not just a twitter handle, but who I am at the core. I love being a bard. I am honored and excited to get another chance to do it again. Consider yourself invited.

For more information email me, thecellochick@gmail(dot)com


OK, that's the first exciting news. The second exciting news is...


My second book, Life Etudes: Studies In Thriving At The University of Catastrophe, is published. It's on sale now at amazon.com in print and for Kindle. You can also get a copy for your Nook. The iBooks and the audiobook editions are coming soon. 

Life Etudes: Studies In Thriving At The University of Catastrophe is about learning to adjust to life with diabetes and MG. 
  
etudes /noun/ musical compositions practiced as a study to improve technique

life etudes /noun/ compositions about thriving after a catastrophe through changing perspective, finding meaning, strengthening endurance, reaching for transcendence, and making a difference

Life Etudes is in five parts.

Part 1: Perspective I need to keep stretching my perspective so I am not consumed with anger and bitterness. Stretching a wider perspective reminds me I am not trapped. It reminds me I’m not the only student at the University of Catastrophe. I don’t face my problems alone. Neither does anyone else.

Part 2: Meaning I need to continue to find meaning in my life, so I am not dragged down by hopelessness and despair. On the surface, having both MG and diabetes is a disaster. Fortunately, I can see below the surface. I can find the sweet things in my life and enjoy them. I can share them with other people. Knowing I am making another person’s life sweeter gives my life meaning.

Part 3: Endurance  I need to keep strengthening my endurance because this race has been long and I am not at the end yet.

Part 4: Transcendence Every day I need to build my ability to transcend disability and diabetes. They are not the core of my life. They challenge me and create tasks for me to do, but they are not a place where my thoughts and spirit need to dwell. 

Part 5: Shine I want to use my inner light to make a difference for others. I’m not the most important student at the University of Catastrophe. I’m not the bravest or the smartest. The lessons I’ve learned aren’t for me alone. I want to use them to make life better for my classmates.

In Life Etudes: Studies In Thriving At The University of Catastrophe, I shared my struggles and triumphs in learning how to live a peaceful, joyful, meaningful, life even as a perpetual student at the University of Catastrophe. I hope you enjoy reading it as much as I enjoyed creating it.

Could you help me out and spread the word about my book on Twitter, Facebook, and other groups you belong to like Tu Diabetes and Daily Strength? I would appreciate it a lot. The show A New Beginning is booking now. Have cello, adapted bow, and will travel any where, any time. Please email me here: thecellochick@gmail(dot)com if you would like for me to perform for your group. Sir Barclay the Cello and I would be honored. JOY!

Wednesday, August 21, 2013

Dear Cancer

Dear Cancer,

15 years ago today I kicked your ass. It wasn't easy, but I did it. I went to the hospital at five in the morning unsure if I would leave in a body bag. You see Cancer, I only had a 40% chance of surviving my surgery. I was warned ahead of time it would be easier to die than survive. You were with me that morning, growing silently in my thymus gland, wrapping your cancerous tentacles around my aorta twice. I had two choices that morning: kick your ass or die. You wanted me to drop dead. I wanted to live. You lost. I won. Do you remember how?

I undressed in a locker room and put on a hospital gown. I put on support stockings that barely fit. Knowing what was coming next, I took a deep breath and faced you down. After I put on a hospital gown, hands guided me and I stretched out on a gurney. I got an IV in my arm and watched as a man taped the IV in place. I sat up and got a spinal catheter in my back for pain relief after surgery.

Then the anesthesiologist said something about medication to help me relax. Relaxing sounded like a good idea. I watched her hands moving, putting a needle in the IV line. Then I looked at a hideous yellow-green wall. The wall clock said it was a little after six in the morning.

I blinked.

I looked at a hideous yellow-green wall. The wall clock said it was a little after five in the evening. Hands touched my arms and face. Voices chattered words I couldn't comprehend. "Mrs. Smith. Mrs. Smith?"

Who is Mrs. Smith? Where is Mrs. Smith. For that matter, what is a Mrs. Smith?

"C'mon. It's time to wake up. Surgery is over. You did great."

I did what? Surgery is over? How can that be? It's only been a second. I turned my head a millimeter to the left. Apparently, my little head bob was the cue for the gorilla on my chest to dance. I'm not kidding. Right under my chin an invisible 500 pound gorilla wearing extra sharp golf cleats danced! Now, that woke me up! The pressure directly under my chin stunned me. I could hardly breathe. The pain was just off the scale. Not surprising, considering for the past nine and a half hours my entire rib cage was ripped in two down the center. Hand me the bone saw. Anyone seen my rib spreader? Sorry, I think I left it hanging on my barbecue grill.

There are no words to fully describe the pain of a median sternotomy and I know why. When the English language was in its infancy, and some poor dude got a battle axe embedded in his chest, he died before he had a chance to cry out. He certainly didn't invent a new word on his way to a dirt nap. Whack! Dead. Meanwhile, after being split open with an electric saw, I clung to life.

Cancer, you tried to kill me that day and the next day, when my heart and lungs swelled. When I got an infection you almost did kill me. But I was stronger than you. I am still stronger than you.

Surgery to remove you hurt so badly I cried every time I changed the channel on the remote control. I couldn't hold a book. I couldn't bring my hands together. I couldn't play my cello for a year. You stole my music for an entire year, Cancer. I didn't bounce back from surgery. I crawled back. Inch by painful inch, I crawled my way forward until I won my cello back. I couldn't have a hug without pain for two full years. Two years without the comfort of a hug because of you, Cancer, and guess what? I survived that, too.

I didn't know if I would live to see my 30th birthday because of you. But I did live. I turned 30. And 31. And here it is 15 years later and you're still gone, Cancer. I kicked your ass. Remember me. Remember my name. If you ever come back into my life, I swear I'll kick your ass again. Because life is worth fighting for. It's worth crying for, struggling for, striving for, and pushing ahead no matter what. Life matters. Even when it hurts so much just breathing makes you cry, fight anyway. I fought you and I won. You came. I saw. And I conquered you, you son of a bitch. Goodbye Cancer. Good riddance.

Ever so insincerely, your arch nemesis,

Marie

Strip Safely Campaign

Strip Safely_BANNER 

Test strips. I use about ten every day. My fingertips have tiny holes in them. I've seen thousands of numbers on my meter screens. Every single number helps me cope with diabetes. Or does it?
On my meter I've seen this.
And I've seen this.

I make daily decisions about my health based on the numbers on my meter. But, what if those numbers are wrong?

I don't mean what if my meter says my blood sugar is 120 and it's really 119. I mean, what if my meter says 200 and my blood sugar is really 120, or 280. Or somewhere in between.

If you think that's impossible, take a look at the eye opening quiz on Strip Safely.

http://www.stripsafely.com/


Did you know the accuracy standards for glucose meters were set in 2003? How long ago was that? Well, in 2003, the iPhone hadn't been invented yet. YouTube hadn't been invented yet, either. Facebook and Twitter didn't exist. A lot has changed since 2003. Our meters need to change as well.

Although the standards set in 2003 require meters to be accurate +/- 20%, 95% of the time, not all meters are meeting that standard. Some meters are off by as much as 40%.

Here are  recommendations from the Strip Safely Website:

  • Recognition that the accuracy of BG strips is a public health and safety issue. ◦ 25 million PWD in USA are at risk.10
  • Ongoing testing of BG strips to assure compliance with regulatory accuracy standards.
  • Quality assurance should be done on strips sold through normal distribution channels.
  • Standards for accuracy should improve to the latest ISO standards.
  • The standards that meters and strips are failing to achieve is 2003’s +/- 20%, 95% of the time
  • We need better accuracy standards than ones created in 2003.
  • CMS competitive bidding should create a process that consider quality not just price.
  • Public awareness of how to file an adverse event complaint on BG testing systems.
  • Contact information to file an adverse outcomes report should be on all BG testing devices.

 I wouldn't accept a steering wheel with +/- 20% accuracy 95% of the time.  Can you imagine having a speedometer that registered your speed +/- 20% 95% of the time. Or a brake pedal stopping your car  +/- 20% of the time? As a person with diabetes, my meter is my speedometer. It's my steering wheel. It tells me when I need to give myself more insulin, and how much.

Right now my meter says my blood sugar is 100. Or is it 120? Or 80? 60? 140? The truth is, my blood sugar is somewhere between giving myself a correction through my insulin pump, and eating a glucose tablet. All I want to do is look after my diabetes. What good are meters if I can't trust them?

http://www.stripsafely.com/

Take a look, and then make some noise. It matters.



Wednesday, August 7, 2013

A Note to Writers: Diabetes And Drama

I was watching a show on Netflix, and in the opening scene there was a character who had diabetes. He was shaking, and sweating, and fumbling for his glucose tablets.

Wait...

No, that's not what happened. The character was showing signs of severe low blood sugar, and of course he treated himself with insulin. Because, that's what all diabetics do when they are low... on TV.


 http://i0.kym-cdn.com/entries/icons/original/000/000/554/facepalm.jpg

As a writer, I can understand different ways diabetes can fit into a plot.

-- Syringes freak out most mere mortals
-- "Drink the juice, Shelby!"
-- Insulin vials can be spiked with a toxin, or poison, or...

Besides, some symptoms of low blood sugar, like sweating and shaking, look good on camera. So do syringes. I mean, they are sharp, and go into the skin, and ewwwww!  Maybe writers don't realize how high blood sugar--which really is treated with insulin--could fit into a plot, too.

For example... A character at a restaurant drinks 9 glasses of iced tea during one meal. I, ahem, actually did this a week before I was diagnosed with diabetes. I drank nine glasses of iced tea, and three glasses of water, and I was still thirsty. Excessive thirst is, well, excessive. Excessive can be interesting in a story.

Maybe a character finished three water bottles in the parking lot, walked into a building only to find out the water cooler is empty. Maybe there some sort of emergency and the water is cut off to the whole building, so the character grabs a flower vase, flings the flowers on the floor, and drinks water from a vase.

How many different ways could excessive thirst play a role in a crime drama? Something nasty in the water? Foxglove flowers in the vase poisoned the water with digitalis?

Here's a thought, have a character test their blood sugar. Blood always looks good on camera. If you need both panic and insulin to be part of your storyline, just make the meter look like this...

Look, the meter says HI.  Isn't that sweet? Hi Nano. Hi back. Oh... wait. That's not a friendly Hi at all.

That HI means holy @#^% my blood is turning into pancake syrup. A possible dramatic reaction to seeing a HI on a meter might be akin to seeing the toaster is on fire. (I, ahem, yelped pretty loud.) That reading will upset anyone with diabetes, real or imaginary. After seeing a HI on the meter, and flipping out, NOW the character can fumble for an insulin syringe.

Your job as a writer is to invite your audience to suspend their disbelief and enter into a fictional world you created. The more reality you bring into your fictional world, the easier it is for your audience to join you. If your character is talking about pine trees, and pointing to an oak tree, the audience backs away from your fictional world. Eating an orange, and calling it a banana, will do the same thing.

To wrap up... Low blood sugar is treated with candy, not insulin. If a character is shaking and sweating and nervous, they need a snack.

High blood sugar is treated with insulin. High blood sugar triggers excessive thirst. Feel free to use out of control thirst, a meter reading HI, to establish the need for insulin. After that, go ahead with your insulin based plot line. Your story will be more believable. Remember, the audience wants to believe your fictive world is real, so play fair and we will join you in your story.

Now, go write something amazing. I'll be watching.

Monday, July 22, 2013

Insulin Pump Set Maneuvers In the Dark

I'm not good at insulin pump set changes. I'm not skilled with Dexcom Insertions either. Still, I manage to muddle my way through. On Friday night my pump alarmed. XPU was low on insulin. Ten units left. For me, ten units is enough for several more hours of basal and a snack. After doing some calculations I decided I could hang on until midnight or so.

Around 11:30 a thunderstorm blew through town. A tree bender with vivid lightning and a massive downpour. We couldn't see the house across the street. The street light flickered. It flickered again. And then the power went out in our neighborhood.

Uh-oh. I tripped over the panicking dog and went into the kitchen to get a flashlight. Of course, I flicked on the light switch to help me find the flashlight. Click. Still dark. Duh! I found a dim flashlight. I also found out I had two units of insulin left in my pump. I had no choice. I had to do a set change in the dark.


I shined my dim flashlight on the laundry room light switch. Click. Still dark. Duh! Glad no one saw me do that, I opened the laundry room closet and gathered my insulin pump supplies and returned to the kitchen. After washing my hands, I set my flashlight down on the kitchen table.

Now, I am not good at filling pump cartridges under optimal conditions. Filling one of those bad boys in the dark was stressful. Do I have any air bubbles in there? I dunno. I can't see what I'm doing. Maybe this would be easier if I turned on the kitchen light. Click. Still dark. Duh!

I filled my syringe, pushed insulin back in the bottle to try and get rid of the bubbles I couldn't see.  After doing this a few times, I decided it was going to have to be good enough. But how was I going to get the pump set in? Bending this way and that, I tried to get the flashlight on the table to shine in the right place. Fortunately my daughter heard me thumping around and came into the kitchen. She held the flashlight for me while I got my set in place.

I set the pump on rewind, got the old insulin cartridge out and put in the new one. Insulin pump set maneuvers in the dark was a success. The power came back on at 5 AM. The roar of the airconditioning was a welcome sound. Five AM is also when I realized I could have saved myself a lot of stress and hassle if I did the emergency set change in the car. Duh!

Thursday, July 11, 2013

A Happy And Sad Day

Today is a happy and sad day. Today is my daughter's birthday. She's 23. This morning we found out my mother-in-law passed away. Cake and candles and funeral songs all at once. My blood sugar is reacting the same way I am, and being anything but stable. Tomorrow is my birthday and I expect I'll feel pretty much the same way I do now.

Even though it's the middle of summer it feels like it's snowing inside.


Tuesday, June 25, 2013

Myasthenia Gravis Awareness Month: Speaking Up

Today MG is making it tough for me to speak up. MG stole my speech. I was supposed to record a few chapters in my audiobook tonight, but my speech is unintelligible.

I can feel exactly what is going wrong with my facial muscles and tongue. I'm having trouble closing my jaw, so my mouth is hanging open. The muscles that control my cheeks and jaw are moving in slow motion. Some aren't moving at all. My tongue cannot reach my teeth. It takes 100 muscles working in perfect synchronicity to speak a sentence. Many of my facial muscles are offline right now. Of all the crazy ways MG screws up my body, speech difficulty is one of the most distressing.

Losing my speech separates me from other people. This separation is painful and lonely. I can still participate in community events from a wheelchair, or sitting down at a table. However, without speech, I cannot connect unless people are willing to wait for me. Text to speech technology is clumsy and frustrating. By the time I am ready to make a comment, conversation has already moved on without me.

There is a difference between choosing to be silent and having silence chosen for you. MG has chosen to silence me against my will. So I am speaking up through my blog.

Although I find the loss of speech isolating in person, I can still connect online, and that matters to me.

Sunday, June 9, 2013

MG Awareness Month: Vocabulary Lesson

It's June and that means it's Myasthenia Gravis Awareness Month. What is myasthenia gravis? Well, here's the description from Medscape: "Myasthenia gravis (MG) is a relatively rare autoimmune disorder in which antibodies form against acetylcholine nicotinic postsynaptic receptors at the neuromuscular junction of skeletal muscles."
 
If that made sense there is no need to read further. You won a video of a cat riding a Roomba.

On the other hand, if you read that sentence from Medscape and it sounded like, "Myasthenia gravis (MG) is a relatively rare sumthin-er-other-immune condition where thingamajigs form against doohickey dealiebopper thingamabob whatchamacallits at the humminahuh of whatchamawhoozit." Have no fear, I have a painless vocabulary lesson for you.

Our vocabulary words for today are: autoimmune, acetylcholine, nicotinic postsynaptic receptors, neuromuscular, and skeletal muscles.

1. Autoimmune
 Contrary to popular belief this does not have anything to do with vaccinating your car against muffler failure. An autoimmune condition is when the immune system goes haywire and mistakes regular normal parts of the body as dangerous and attacks them.

2. Acetylcholine
Acetylcholine is the main ingredient in nail polish remover. No, wait that's acetone. Sorry. Actually I am not really sure what acetylcholine is. Let me Google it.

Wikipedia says: "Acetylcholine (ACh, pron. ah-See-tul-KO-leen) is an organic, polyatomic cation that acts as a neurotransmitter in both the peripheral nervous system (PNS) and central nervous system (CNS) in many organisms, including humans."

Well, that just cleared everything right up.

Let's try that again, using words that don't cost 25 bucks a piece. Ready? Acetylcholine is a substance that activates muscles.

3. Nicotinic Postsynaptic Receptors
 What is that, some kind of newfangled ashtray that disposes of nicotine after use?

Wikipedia says: "Nicotinic acetylcholine receptors, or nAChRs, are cholinergic receptors that form ligand-gated ion channels in the plasma membranes of certain neurons and on the postsynaptic side of the neuromuscular junction. As ionotropic receptors, nAChRs are directly linked to ion channels and do not use second messengers (as metabotropic receptors do). Nicotinic acetylcholine receptors are the best-studied of the ionotropic receptors."

There are actually people who understand words like these! I am not one of them. If you are not either, here's the simple version. Picture a game of catch. One person throws the ball, and the other person catches it.  The nervous system throws the acetylcholine ball. The muscles catch the acetylcholine with nicotinic acetylcholine receptor mitts. Once the acetylcholine ball is caught, muscles move.

4. Neuromuscular Junctions

Neuromuscular is a 25 dollar way of saying nerves and muscles. Neuromuscular junctions are where nerves and muscles meet up.

5. Skeletal Muscles

A skeletal muscle is any muscle you can move by thinking about it. Can you move your index finger, hold your breath, chew a cookie? You're using skeletal muscles.


Vocabulary Review
 1. Autoimmune

a.) A vaccine to prevent cars from breaking down
b.) When an unhealthy immune system mistakes part of the body as foreign and attacks it.

2. Acetylcholine

a.) An ingredient in nail polish remover.
b.) A substance that activates muscles

3. Nicotinic postsynaptic receptors

a.) A politically correct term for Newfangled Ashtrays.
b.) Receptors on muscle fibers that receive acetylcholine

4. Neuromuscular

a.) A therapist who specializes in treating sad and neurotic muscles
b.) Muscles and nerves

5. Skeletal muscles

a.) Skeletons don't have muscles. That's why they look so creepy. Duh!
b.) Muscles you can move by thinking about them.

Easiest test ever. Well done. You got a gold Star.

Golden star


Now that we have learned some new words, let's take another look at that sentence from Medscape: "Myasthenia gravis (MG) is a relatively rare autoimmune disorder in which antibodies form against acetylcholine nicotinic postsynaptic receptors at the neuromuscular junction of skeletal muscles."

Remove all 25 dollar words...

Myasthenia Gravis, MG is a relatively rare disorder where the immune system mistakes critical parts of the human body as dangerous and attacks them. In MG the immune system attack is targeted at the junction where nerves and muscles meet. In all people, receptor sites on muscle fibers act like catcher's mitts. It is their job to "catch" acetylcholine, a substance that activates muscles. This how nerves tell muscles to move.

In MG, the receptor sites on muscles are destroyed by the immune system, stripping the receptors of their catcher's mitts. Without a way to catch acetylcholine effectively, the muscles are not able to move properly. The attack is focused only on muscles a person can move by thinking about them. The muscles of the heart and gut are spared. Without properly functioning skeletal muscles, people with MG experience rapid muscle fatigue.
 There, now you know more about MG. Congratulations! You just won a cat riding a Roomba





Friday, June 7, 2013

Busy Bee

animals,bumblebees,insects,nature,stings,self-defence,cartoonsI've been a busy bee. I'm working on finishing my book Life Etudes: Studies In Thriving At The University of Catastrophe. The print edition is almost ready. So is the e-book. I'm currently recording an audiobook. It's been fun reading the book out loud.

I'll be recording cello music for the audiobook over the weekend and working on the final production after that. I'm looking forward to sharing the book with you. I hope you enjoy it as much as I enjoyed creating it.

Thursday, May 23, 2013

Have you seen this?

Here's a short documentary about diabetes. http://www.diabetescostars.com/casting-call.aspx Take a look. When the documentary passes 10,000 views, The Diabetes Hands Foundation will receive a second $10,000 donation from Sanofi matching the first $10,000 they gave last year when the casting call for the documentary was announced.

http://www.diabeteshandsfoundation.org/ 

Wednesday, May 22, 2013

Guest Post by Molly Clarke: Myasthenia Gravis and SSD

This post is written by Molly Clarke. Molly writes for the Social Security Disability Help blog where she works to promote disability awareness and assist those throughout the Social Security Disability application process. You can reach Molly at mac@ssd-help.org.

Applying for SSD Benefits When You Have Myasthenia Gravis

Myasthenia gravis (MG) is a neuromuscular disease that affects the autoimmune system, and can cause groups of muscles to become significantly weakened for a period of time. As this condition becomes more severe, individuals may find it increasingly difficult to function at work.

Lack of income and medical insurance can cause severe financial distress.  If you find yourself facing these circumstances, you may qualify for Social Security Disability benefits.  The following article will give you a better understanding of the Social Security Disability benefit system.

Myasthenia Gravis and Social Security Disability

Myasthenia gravis affects each person differently. In some cases, the condition can be mild and easily controlled with treatment. In other cases, MG progresses quickly and becomes completely debilitating. To determine whether you qualify for disability benefits, the Social Security Administration (SSA) will evaluate your specific symptoms and how they affect your ability to work.

To qualify for disability benefits with myasthenia gravis you must meet at least one of the following criteria:

Trouble Talking and Breathing – The SSA acknowledges that individuals who have myasthenia gravis often experience difficulty breathing, talking, and swallowing. If you are experiencing substantial trouble with these tasks, even after receiving treatment, you will likely qualify for Social Security Disability.

Difficulty Using Arms and/or Legs – Myasthenia gravis can cause difficulty controlling the muscles in the arms, hands, legs and feet. This can complicate simple tasks like walking, standing, sitting, grabbing, pulling, pushing and carrying.  If considerable muscle weakness and/or fatigue make it impossible for you to complete typical workplace activities, you may be eligible for SSD benefits.

Disability Programs
It is important to note that the SSA offers two separate disability programs that each have their own set of technical qualification requirements.

Social Security Disability Insurance (SSDI) provides benefits to sick or disabled workers. This program is funded by Social Security taxes.  To qualify for SSDI, applicants must have adequate work history. To learn more about SSDI, visit this page: http://www.disability-benefits-help.org/ssdi/qualify-for-ssdi.

Supplemental Security Income (SSI) is a program that is designed to assist low-income individuals that are blind, over the age of 65, or meet the disability requirements.  Eligibility and the amount of monthly assistance provided are determined by the applicant’s financial standing. Learn more about these requirements here: http://www.disability-benefits-help.org/ssi/qualify-for-ssi.

Preparing for the Application Process


The SSA is flooded with applications for disability benefits, and majority of these applications are denied because the applicants do not meet the requirements, or do not provide medical evidence to support their claim. You can increase your chances of approval by thoroughly preparing for the application process.

To build a strong and compelling disability application, you will need to provide detailed medical records that demonstrate the severity and frequency of your symptoms. These records should include documentation of your medical history, including all of the times you have received treatment and/or been hospitalized due to complications of myasthenia gravis. It is also wise to include assessments and recommendations from your physicians that explain your prognosis and the limitations you face due to your illness.

The Social Security disability application procedures can be overwhelming; however it is important to remember that this program exists to provide you with the financial assistance you need. To learn more about Social Security Disability benefits, visit Social Security Disability Help or contact Molly Clarke at mac@ssd-help.org.

Disclaimer

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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