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
Am
So
Embarrassed.

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.

Eureka!

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?

No.

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.

Friday, March 28, 2014

Medicare: Cover CGM's Now!

I live in tornado alley. A few years ago the sirens sounded and my family took cover. Across the street, trees were uprooted. Trees fell over on fences and garages. The tornado really did sound like a freight train. The sirens gave us enough warning to get to safety. I'm grateful my government provides that protection for the community.

Diabetes is like living in tornado alley. You never know when trouble is going to strike. Wouldn't it be great if someone invented an early warning system? Something small that I could carry in my pocket that would sound an alarm before I had a seizure from low blood sugar? Or how about a device that sounded a warning that my blood sugar was dangerously high? Wouldn't that device be life saving?

The early warning system for people with diabetes does exist. It's called Continuous Glucose Monitoring. I carry one in my pocket. Most of the time it is quiet and monitors things in the background. But every few days, I get an alarm.


Not only does the graph show my blood sugar is 50. It has an arrow pointing down letting me know my blood sugar is falling. Now is the time to intervene before something tragic happens.


This time my blood sugar was going up in the middle of the night. The high blood sugar warning sounded. I woke up and discovered the cat had chewed through my insulin pump tubing. Once again my CGM saved me from disaster.

A CGM is an early warning system that I have come to rely on. It's something I feel my life depends on. When I found out Medicare doesn't cover CGM I was surprised. Then I was angry. A device this remarkable needs to be available for people over 65. 

A CGM is as life saving as a tornado warning. Our seniors deserve the same protection I have. Medicare needs to cover them now. 

I'm joining the Crusade for CGM Coverage By Medicare. Do you want to join me? Here's how.






Tuesday, March 11, 2014

One of those lows

I had a sneak attack low blood sugar today. I was in the grocery store and it slammed into me out of nowhere. POW!

OK, I need some food. I'm in a store surrounded by food. But there are too many choices and the colors are too bright in here. I know, I'll grab a snack bar. Trudge over to the snack bars. Do I want a LĂ„RABAR? Kind Bar? Power Bar? Special K Bar? Do I want fruit? Nuts? Granola? Soft? Crunchy? Munchy rhymes with crunchy. So does punchy. Punchy. What a funny word. Now, what was I doing here? That's right. I need a bar because I'm low. But, I don't know which one I want. Wow I feel weird. My face is feeling all scrunchy. Which rhymes with crunchy, munchy, punchy... Hey this snack has Chia seeds. Cha-cha-cha Chia.

I have no idea how long I stood in front of these bars just staring and thinking up rhymes. I didn't grab one. The colors were too vivid and confusing. Instead, I left Aisle 12 and walked across the giant store to the deli. By this time my insides started twitching. At the deli I bought chicken salad. Understand, directly behind me was the bakery section full of donuts, cupcakes, cookies and eclairs. But, it didn't occur to me to get a cookie. Nope, I got a half a pound of delicious carb-free chicken salad.

Because I was low.

And going lower.

I managed to pay for my chicken salad at a little kiosk, but by the time I got my four cents in change, I had a hard time putting the money in my wallet. My heart started racing. The rhyming in my head got worse. I started sweating and shaking. Wow, I am low. I need carbs. This salad doesn't have any carbs in it. Why did I buy this? What am I thinking?

My legs didn't want to work anymore, but I mentally slapped myself into staying upright and walking all the way across the store again to the checkout. Candy. I need candy. Candy will fix this. I got a packet of Air Heads. The store was jammed and all 15 checkout lanes were packed. I had that horrible feeling that if I waited in line, I might need to sit down. The lady in front of me with a thousand items in her cart noticed I just needed to get a packet of candy. She let me go ahead.

As I was leaning on the counter, trying to remember which coins were quarters and which ones were dimes, I felt like a foreigner fumbling with unfamiliar currency. Why is there a national forest on the back of this coin? Is this a quarter or not? I felt so lost and confused I almost burst into tears.

While I was trying hard to stay upright and focused, a cartoon flashed through my head. It's from texting my pancreas. (Here's the cartoon: Supreme Awesomeness) Remembering it reminded me I'm not alone in this. I'm not the only one who has had a wicked low in public. In that moment, while I was trying so hard to keep from falling apart, thinking about that cartoon made all the difference. Thanks Kim.

(I ate the candy in the car, and the chicken salad, and waited until I felt OK before driving home. However, what made this whole episode even more ridiculous was I had glucose tablets in my purse the entire time. It didn't occur to me to eat them. Doh!)

Sunday, March 9, 2014

Maybe it's not my fault

For the past two weeks my blood sugars have been high and hitting the 300 mark way too often. I've tested, and done corrections, but nothing worked. I've been beating myself into a pulp because I can't get things to work right. Temp basals helped, but I stayed above 200 most of the time, which is not normal for me. I felt like a failure.


So, I started to wonder, am I eating the wrong things? I had a salad with zero carbs for lunch and two hours later my blood sugar was 259. What is going on? Maybe I have a bad set? Yank off insulin pump set, put in a new one. It didn't help.

Maybe the insulin in my pump is bad? I dumped the insulin in my pump and tried again. Now it is even worse than before. Blood sugar 283. Give a correction. Two hours later, blood sugar 268. Finally I got angry. OK, diabetes. You want to play rough, I'll play rough. Rage bolus five units. Take that! Two hours later, blood sugar 234.

What The FRUCTOSE is this? Why is this happening? What am I doing wrong? I stayed awake in bed trying to figure things out. No, that's not true. I stayed awake in bed berating myself for being horrible at diabetes management. I put myself down. After putting myself down, I dragged myself face down through the mud.

But, then I remembered something. Everything went haywire after I opened that new vial. Maybe it's not my fault.

I got a new vial, put in a new set, and my numbers have been averaging 100 points lower ever since. All that time I was beating myself up for having crappy diabetes management, the problem was crappy insulin.

I've learned two things from this:

1. Insulin that lost its potency makes my blood sugar numbers go haywire. It works, but not nearly as well. If my blood sugars are averaging 100 points higher than normal, get a new vial.

2. I also learned not to beat myself up for being crappy at diabetes management. I'm not stellar at it, but I don't suck nearly as badly as I think I do.

I wish I could tell you I've learned not to beat myself up, but... I'm still me. There will be a next time. Hopefully it won't last nearly as long. In the meantime, I'm sorry, Marie. Sorry for being mean.

Wednesday, March 5, 2014

One potato, two potato

I've been a potato this winter. There. I said it. This winter has me creating a comfortable @ss shaped groove on my sofa. Normally, winter is my favorite season. I love the cold on my face and the smell of snow. I love the beauty of ice sparkling on lakes. Most winters I love walking in the snow. But this winter...

couch_potato_204705[1]
Found here
Winter smacked the Chicago area with an ugly stick this year. We've had 73.9 inches of snow so far. And it is snowing right now. It has snowed 45 days this season. It never snows this much. Our usual snow fall is less than 25 inches a season. Not only is it snowy, but it's been bitter cold.

Usually, I love below zero cold weather, because it is an anomaly that doesn't repeat itself. During the first polar vortex, when it was -19 I was outside playing with boiling water and soap bubbles. The boiling water turns to vapor, and the bubbles freeze in mid-air.

But, then there was a second polar vortex. And another. My spirit animal is a grizzly bear. It's time to hibernate. So, I've read a lot of books and carved a comfortable groove in my sofa. It's been too icy, snowy and cold to take a walk. My balance isn't stable and walking in bad weather is tough for me. Even when I've tried walking outside I've ended up returning to my comfortable couch.

What I have done to get some exercise is store walking. Walking laps around the store, followed by laps through every aisle, and back to laps around the store, gives me a 45 minute walk several times a week. So, technically I haven't been a potato all the time, but without walking outside I feel like a potato.

Does anyone else have trouble exercising in the winter? What are you doing to keep from turning into a potato? I could use some inspiration. 

Friday, February 28, 2014

Rare Disease Day 2014

It's Rare Disease Day. "A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time."

What does someone living with a rare disease look like?


I've officially been living with myasthenia gravis since 1998. But, I had my first symptom of MG in 1973. I was four. My family went to downtown Chicago to look at the Christmas window displays. We walked and walked. Then I sat down on the sidewalk. My parents picked me up and stood me up again. I sat back down. My legs wouldn't hold me up. My parents tried several times to help me stand, but I physically could not walk another step. My three-year-old brother had no problem keeping up. I had to be carried.

I was weaker than my siblings. They could swing across the bars at the playground. I could only make it halfway and then I would fall. Every year my elementary school had a fitness competition. Every year my siblings won and every year I lost. My siblings won patches and certificates. I felt shame because I tried my hardest and failed anyway.

Myasthenia gravis causes rapid muscle fatigue. Rest makes muscles work again. The works/stops working/works/stops working aspect of myasthenia gravis makes people who live with MG look lazy. No one recognized there was something physically wrong with my muscles. Instead, I heard...

You need to build up your stamina.
You need to try harder.
You need to practice.
You just need to...

Twenty-four years later, I found out I have MG. The puzzle pieces clicked into place. Mild MG goes undiagnosed because a simple rest makes muscles work again. So, a child who rides her bike, then reads a book for a while, and goes back to riding her bike, appears normal. My parents didn't know something was physically wrong. Neither did my pediatrician. MG is not on the medical radar screen. 

Myasthenia gravis affects 14 in 100,000 people. 


If 14 people in this stadium stood up would you notice? 

Getting diagnosed with diabetes was easy. I was in DKA, my blood sugar was almost 400, and my A1c was 13. It took one doctor two seconds to diagnose me with diabetes. Getting diagnosed with MG took 17 doctors and 18 months. Why did it take so many? Two reasons.

1. Doctors don't notice the 14 people waving in that stadium any easier than you do. MG is so rare, odds are a doctor will see one patient in their entire career.

2. MG symptoms fluctuate. That is the nature of the disease. The muscle weakness symptoms are often difficult for the patient to describe. Because the symptoms are vague and come and go, 16 doctors pulled out the, "It's all in your head," script. None of them took the time to look up my symptoms. It was easier to dismiss me than help me.

The, "It's all in your head," script needs to be retired. Rare diseases are out there and people living with them deserve a diagnosis and a treatment plan. On this Rare Diseases Day, if I could institute one rule for all doctors it would be this:

If a patient comes into your office and says she has some odd symptoms that make no sense, come and go, and are distressing, please consider autoimmune illnesses before you dismiss her as mentally ill. 

Rare diseases are real. I'm living proof.


















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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