Whoops!

XPU the insulin pump just beeped at me. Beep! Beep! Why are you beeping? I pulled her out of my pocket and looked at the screen.

"Check BG in two hours."

Wait. XPU only says that if I've bolused for food. I didn't bolus! What the fructose is going on?
A split second later, I shouted something that rhymes with goalie mitt as I scrolled to the history screen. And there it was, clear as day:

Normal  0.00 units of 0.00 units
COMPLETED.

My pump is in my pocket. I must have bumped her and given myself a stealth bolus. At least it was for zero units. That could have been interesting. I just locked my pump so that won't happen again. Whoops!

Guess the picture

What is this a picture of?

A rare sea creature?

Nah...

Pump tubing. Cool, huh?

Spare a Rose, Save a Child

Insulin. It's as necessary to survival as air. Everyone needs it to live. I recently went to the pharmacy to buy insulin and had to leave because I couldn't afford my prescription. It was frightening, but I could go back to the pharmacy a few days later and get the insulin I needed. Other people aren't so lucky.

Children with Type 1 Diabetes in the developing world need our help. The Life for a Child program, which is an International Diabetes Federation program aiming to take “contributions from donors [to] go to established diabetes centers enabling them to provide the ongoing clinical care and diabetes education these children need to stay alive.”

This year the Diabetes Hands Foundation is asking each of us to donate the cost of one Valentine's rose to Life For A Child. For more information click here.

To donate: Click Here.

Feeling Better

Thanks for the support. I'm feeling better now. I've ordered 900 test strips. They will come in the mail tomorrow. I have one box of sets for my pump and I will be ordering more. I picked up my insulin vials on Monday. Having supplies in the house is reassuring.

It will take a while for me to get used to the new insurance. I have to remember I am adaptable and able to handle changes. I also have to remember that panic and fear are as much a part of life as tears and laughter. I've been knocked down. I'm climbing back up.

Health Insurance And Stress

This is my first year with a high deductible health plan and I'm stressed. My husband's employer made the switch in late December. I have always had traditional health insurance. Lots of co-pays and a $1,000 DME deductible, but it was spread throughout the year. Now I need to pay upfront for everything until we meet our deductible. I went to pick up my two boxes of insulin pens. Instead of my normal $50.00 co-pay the bill was $713.99. I was stunned. I told the pharmacy I couldn't afford my insulin and they were understanding. I will get my prescription changed to vials. I'm grateful I got a pump last year, except now I have to figure out how to afford supplies. I don't know how I am going to manage and I am afraid.

My husband's boss did not help us start a health savings account, or give my husband a raise to cover the out of pocket slam dunk. It felt like being dropped into a dark hole. I've been crying a lot. Doesn't chronic illness cause enough suffering without an added financial kick in the face?

My parents helped my husband and me start a health savings account. I am beyond grateful that they were able to help. I know that I will adapt to the changes in time. Right now it feels overwhelming. These past few weeks have been hard on me. Are my doctors still in-network? What are my in-network sources for pump and Dexcom supplies? How will I afford my medicine? And test strips? I am feeling cornered, frightened, and stressed.

Stress is hard for me to deal with. I don't process it well because of chemo brain. Between 2005 and 2007 I had 23 back to back cycles of moderately high dose chemotherapy. One week I would get an infusion and then I had two weeks of rest. Every three weeks the cycle repeated. I did this for 18 months. The chemotherapy was a derivative of a World War I chemical weapon called mustard gas. One of the few drugs that can cross the blood/brain barrier, the toxic medication bathed my brain in poison.

I had problems with memory almost immediately. I had trouble finding words. What is the name of the box on the counter you put food in and it gets hot? I called the oven the dishwasher. I called the dishwasher the washing machine. It felt as if my words were in drawers and I couldn't access the right ones. At first it was funny, but my cognitive impairment got worse.

I had trouble understanding what I read. I could recognize the symbols, but they lost their meaning. I had a 4.0 GPA in college and I couldn't read my own grocery list. A few weeks later I couldn't figure out what a shopping cart was for. I held the handle for a long time. Tears streamed down my face. I knew I should know, but I couldn't figure it out. When I finished shopping I couldn't remember how to write a check.

As bad as this was, my dementia symptoms increased. I got lost four blocks from my house and couldn't remember how to get home. I knew I was supposed to know where I was, but suddenly nothing looked familiar. I was scared senseless. Fortunately I wasn't alone. My service dog noticed I was distressed. I followed Honey as she made left and right turns. She took me home. I never trained her to do this. Honey just knew I needed her and helped because she is my best friend. My hero has fur and a tail.

I was in my mid 30's and suffering from increasing dementia because of the chemotherapy. My doctor and I had a discussion and she brought up The Hippocratic Oath: "First, do no harm." The treatment had become harmful. We decided to stop the experiment. Twenty-three cycles of chemotherapy later, MG refused to go into remission. There was no point in trying a 24th. I still take chemotherapy to manage my severe MG. It's just less toxic and I take pills at home.

After I stopped the intensive chemotherapy, the dementia symptoms went away, but they left a shadow. The shadow makes it harder for me to cope with stress. When I am stressed the dementia symptoms return. They are milder, but still hard to manage. Fog rolls into my mind. It clouds my ability to think and make decisions while intensifying my emotions. Having my health insurance change dramatically has increased my stress and lowered my quality of life. We make too much money to qualify for federal or state programs, but not enough money to afford health care with a high deductible. Ever since I saw a bill for $713.99 for insulin, I've been frightened that I won't be able to afford my health care. I'm having a tough time keeping my fear in check. I've fallen down. I need help getting back up.

If anyone has any suggestions or tips on managing diabetes with a high deductible health plan, please let me know. I've been stressed out. Can you help me find my way out of the fog?

Diabetes Art Day

Glucose Meter Steampunk!

An Open Letter About Myasthenia Gravis

In response to a heartfelt e-mail I received, I am writing an open letter. People have misunderstood her MG and attributed her muscle weakness to laziness and being "all in her head." This is far too common and always hurtful.

Please feel free to copy and reprint it. All I ask is that you keep my name and link to the blog at the end. I hope you find it helpful.

An Open Letter to Friends and Family about Myasthenia Gravis

Dear Friends and Family,

As you know I have myasthenia gravis. MG is a rare neuromuscular disease. The word myasthenia means muscle weakness in Greek. The word Gravis means Grave in Latin. Put them together and it spells out Grave Muscle Weakness. MG causes muscle weakness throughout my body. MG isn’t an easy condition to live with. It is also difficult to explain why I can move sometimes and a few minutes later I can’t. This leads to misunderstandings that can be hurtful to me. Since I know you care about me and wouldn’t hurt me on purpose, let me take a moment to teach you about MG.

In MG, the immune system attacks and destroys critical parts of the nerve/muscle junctions. This is hard to picture, so let me give you an analogy. Imagine an old fashioned telephone, one with a base, a curly cord and a handset. When the phone rings, you pick up the handset and talk to the person on the other end of the line. Normally, everything works fine. But, what if there was a problem with the plug between the curly cord and the handset? What if, at random intervals, the curly cord fell out of the handset?

Right in the middle of talking the cord falls out and the line goes dead. The person on the other end of the phone is still speaking, but you can’t hear anything. You pick the cord up, put it back in the handset, and continue your conversation. You talk until the cord falls out again. Over and over this happens. It is frustrating. You only hear bits and pieces of what is being said. With a broken junction between the curly cord and the handset, a conversation is almost impossible.

Are you thinking you would buy a new phone? Hold that thought.

Nerves and muscles communicate in much the same way. The base of the phone is the brain. The curly cord is the nervous system. The handset is any muscle you want to move: index finger, big toe, arm. The clip where the curly cord meets the handset is the nerve/muscle junction. In your body the junctions between the nerves and muscles work properly. Mine do not.

Just like that broken phone, my nerves and muscles cannot always connect. It as if the curly cord falls out and no signal gets to my muscles. My brain is still telling my body to move, but my body cannot respond. Rest allows the connections to work for a while, but then the connection fails again. This happens to me all day every day. Until a cure is found, I have to live with a body that does not always move when I want it to. Unlike a broken telephone, I cannot get a new body.

Myasthenia gravis is a physical illness. It is not a mental disorder or something that I am faking to get attention. It is not laziness. It is not an excuse to lay in bed and do nothing, even on days when I have to stay in bed and do nothing. Some days I have more strength than others. Hot weather, an illness, PMS, stress and random reasons make MG worse.

Stress weakens my body, sometimes severely. In other words, stress makes the curly cord fall out of the handset more frequently. When someone mistakes my physical illness for a mental one it makes me feel misunderstood and sad. Sadness makes my muscles weaker. I need for you to understand that MG is not all in my head. It isn’t something I can “snap out of" or wish away.

MG can make it difficult for me to walk, talk, see, move my arms, chew, swallow, and on terrible days, breathe. MG is treatable, but it is not curable. When my body is weak the best thing for me to do is rest until I get stronger. The best thing you can do to help is understand that I am doing the best I can. MG is difficult to live with. Your support makes it easier.

I hope you understand a little better what it is like to have MG. For more information please contact the Myasthenia Gravis Foundation of Illinois http://www.myastheniagravis.org/ 800-888-6208

by Marie Smith ©2013 www.joybenchmarks.com