Saturday, December 20, 2014

Researcher Needs Volunteers

 If any of you are dealign with diabetic kidney disease, a medical research company could use your help.

Here are the details:

My name is Laura Greer, I work with The Henne Group, www.thehennegroup.com, a small medical research company in San Francisco. We are contacting you to see if you can help us with our new project. We are looking for people, patients who are managing Diabetic Kidney Disease. We will be conducting in person interviews in different cities across the US. starting on the third week of January and participants will receive $100 as a thank you incentive to compensate for their time and effort.

No attempt will be made to sell anything or influence their thinking, and all participation is confidential.

If you think you can help us to spread the information of this study please feel free to post this email or to contact me by phone or email. If you know anyone who is interested, they can contact us on our phone number 415-348-2986 or 877.737.5782 x 286.

People can see if they qualify to do the study by taking this survey:
http://surveys.thehennegroup.com/survey/intweb.dll/project/cawi/1416_DKD_CAWI

My direct line, if you have any questions is 415.348.2918
 

Friday, December 12, 2014

Did I remember or forget an insulin shot?

When it comes to looking after my own diabetes, I have my pump to help me. I can look at my history and see if I remembered to bolus for that chocolate doughnut. Remembering if I gave my dog her insulin shot is becoming a problem.

I knew the day April was diagnosed, giving her insulin would become a routine. Routines are good and dangerous. My typical morning begins the same way:

1. Get up and take care of business.
2. Take April the diabetic dog and her best friend, Honey outside.
3. Come back inside with the dogs and clean up any puddles April left overnight.
4. Greet daughter while she feeds her cat, Cyclone.
5. Feed Fresh Air and Sunshine, my twin cats
6. Feed April
7. Feed Honey
8. Give April her shot--21u NPH.
9. Drive Evelyn to work

Unless, Evelyn has to be at work early. Then I do steps 1-3. Skip ahead to step 9, add a step 4.5 and feed Evelyn's cat, Cyclone. Then I do steps 5-8.

This morning I took my daughter to work early. I came home and fed all pets. Did I remember April's shot? I think I did. Wait, did I? Oh no, I can't remember. Open fridge, find an empty syringe. OK, no I didn't give April her breakfast insulin. Give April her shot. Whew.

Then there is Saturday morning. Saturday morning I sleep in, and my husband feeds April and gives her a shot. Unless, he is napping on the couch and I don't want to disturb him and then I give April a second breakfast and a second shot. OK, that happened once, but wow did that suck.

Do you know what a dog looks like with a blood glucose of 22? I do. Shaking, trembling, stumbling, glassy-eyed and very scary. Did you know a dog will not eat glucose tablets, or drink juice, or eat Smarties, or caramel sauce? We stuffed her mouth full of vanilla frosting. Followed by more vanilla frosting and peanut butter once her BG stabilized. That was so scary. Never again.

Steve and I now have a system in place on weekends. I assume he gave April her breakfast and insulin, unless he says otherwise. So, double insulin doses won't happen again. 42u of NPH at once scared the crap out of us. Morning pet feeding is a daily routine for me and it's hard to skip feeding April on the weekends. Steve reminds me and that helps.

Honey and Sunshine 2013
In the evening, I feed all pets again in the same order: Cyclone first, Fresh Air and Sunshine second, April is fed third and Honey is fed last. The hierarchy keeps things peaceful. Dogs are pack animals. Animals higher in status eat first. Humans-->cats-->dogs is how we avoid any food aggression in our home. I can feed a cat that is sitting on top of a dog, and not worry the dog will snap at the cat. There is only one alpha bitch in our house: me. Everyone knows their standing, and everything is peaceful between pets.

Remembering insulin is the only pet problem I have. I think I will start marking syringes with blue and orange marker. Blue for breakfast, orange for dinner. That way I will know at a glance if I gave April her insulin. If I see a syringe with a blue line on it in the fridge, I forgot April's breakfast insulin. If I see an orange mark, and it is morning, I remembered and replaced the syringe for dinner time.

This could be helpful for people, too. If you use syringes, marking them with marker could let you know at a glance if you gave yourself a shot or not. Timesulin caps for insulin pens are a good idea, too. I use the history function on my pump every day to keep myself on track.

April doing her thing in 2014
Looking after a dog with diabetes requires some extra patience. High blood sugar leads to excessive thirst which leads to puddles in the house. On the plus side, keeping April's blood sugar steady is easier than it is for people, because she is content to eat the same food at every meal. Except sometimes she steals bread off the table. Or gets in the garbage. Still, most of the time we have a good balance and I am grateful.


April is a normal dog who happens to have diabetes. We're doing all we can to look after her. She will be 12 in February, which is old for a weimaraner. She is about 89 in human years. April has two autoimmune diseases: Addison's disease and type 1 diabetes. Both April and I have multiple autoimmune diseases and we both do what we can to deal with it. April hasn't let it wreck her life. I won't let it wreck my life either.

Since I mentioned my pets, I think it's fair to add a few pet pics. Here are the Smith Family kids:


 Cyclone, my daughter's cat. (She pays for his food and vet bills. Her pet, not mine.)


A good mouser and a good boy. I love my grand-cat.


Fresh Air and Sunshine are my cats. Fresh Air is wearing a tuxedo. 
Sunshine is all black and softer than mink. They are both rescued barn cats and littermates. 
They came to live with us in November 2013.
 
 
 We call them "the twins." If you took a gumdrop, dipped it in honey, and rolled it in powdered sugar, it would be no where near as sweet as these two cats. They are amazing friends and I love them dearly. I've had cats for 25 years. These two may be the best cats I've ever known. Fresh Air purrs when he sees me. I don't even have to pet him and he starts purring. Sunshine makes me laugh because she's a clown and kind of dopey in a sweet sort of way.
"There are two means of refuge from the miseries of life: music and cats." - Albert Schweitzer

Honey. My retired service dog, chemo buddy and all around best friend. She is much younger in this picture. Honey just turned 12 in August.


The one and only April, my husband's dog and our loyal friend.


"When the Man waked up he said, 'What is Wild Dog doing here?' And the Woman said, 'His name is not Wild Dog any more, but the First Friend, because he will be our friend for always and always and always.'" —Rudyard Kipling



Monday, December 1, 2014

Good Vibes


I am vibrating with excitement for two reasons today.

Reason number 1: Check out Kerri's blog. YES! OH YES!

Reason number 2: I won NaNoWriMo. For those who have no idea what that is, National Novel Writing Month was in November. I sat down on November 1st and began a novel. I completed a 50,000 word novel draft by November 30th. I have always wanted to do the NaNoWriMo challenge, but I've never been able to do it.

Until this year.

After four years of creative drought, finishing a novel draft made me feel alive again. I love blogging, and writing non-fiction, but writing stories gives my life meaning. I've been lost and disconnected inside without having a story to write. I knew the only thing that would heal me was writing fiction, but I couldn't find my storyteller voice. It was stuck. I was stuck. I've been sad inside for many years, because I couldn't write a story.

Last month, I found my voice. I wrote an entire novel in a month. I feel like I've reconnected with myself. It feels good to be back home.



Wednesday, September 17, 2014

Trying out the Comfort Short

I've been using Inset 30's since I started pumping. Once I got over the fear of the introducing needle, I learned how to put on a new set without too many tears.

The one thing I couldn't get used to was the sound of the insertion device snapping. I'd wince every time I heard it. Line up the little plastic feet against my skin. Adjust the angle. Adjust it again. Take a deep breath and get ready to squeeze the trigger buttons. Wait. I didn't do it. Take another deep breath and SNAP! Wow, that's loud. Way too loud. Scares me silly every time. SNAP! Knowing it just jabbed that long needle into my flesh was bad enough. The SNAP sent me around the bend. There had to be a better way.

After I use my Inset 30, I reach in the center of it with a needle nose pliers and pull out the plastic needle. I toss that plastic bit in the sharps container and recycle the rest of the freaky little race car. I have hyperacusis from myasthenia gravis. The little muscles that move the bones in my ears get weak. When that happens, the entire world is way too loud. Sound hurts. It's like someone put in earbuds with the music full blast. Only, it's every sound everywhere and there is no escape until MG decides to move somewhere less annoying.

I needed to change my set. The eeeeee-eeeeee-eeeeeee of my pump rewinding was so loud I left the room. I couldn't deal with the SNAP from the Inset 30. So, I looked inside the Inset 30, and discovered I could rip the needle and the set loose from the insertion device. This left me with a long needle with an unused set still attached. I fumbled around a bit, and discovered I could put in a set without the insertion device.

It was quiet. It didn't hurt as much because the needle wasn't pushed into my skin with a spring loaded SNAP. After I taped it in place, I realized maybe I should look into a different set. My next order was the Comfort Short.

From Here


This picture from Animas makes the set look less intimidating. Flip the set over and the needle is a lot longer. Still, once I got over the fear of sticking that long needle in my skin, I found I like the Comfort Short.

There are two differences I've noticed.

1. The connection from the tubing to the set is not universal. There is only one way to connect it. Flip the connector upside down and it won't click in place. This is different from the Inset 30.

2. The tubing is more opaque, and the texture isn't as smooth. The plus side? My cat doesn't seem to like chewing the tubing.


The Comfort Short is not for the needle phobic. There's nothing between you and the reality of a long needle going into your skin. But, you can go at your own pace, and there's not a loud snapping noise. I think it's going to work well for me. YDMV.

Saturday, August 23, 2014

16 Years Cancer Free




My cancer free anniversary came and went without me even pausing to notice it. Sixteen years ago a tumor was wrapped around my aorta twice. Sixteen years ago my sternum was split in half with an electric saw. Sixteen years.

I was 29. Now I am... not 29.
My daughter was eight. Now she is 24.
Weeks after my surgery, my husband and I celebrated our 9th wedding anniversary. In just a few days, on September 9th, is our 25th wedding anniversary.

During the last 16 years, the trees in my garden have grown taller. My dark hair has fallen out from chemo. And grown back. And fallen out again from more chemo. And grown back all over again. Now it is streaked with gray.

After my surgery, I got carded at the liquor store. Now my daughter gets carded. Through my bifocals, I watch her pull out her ID. When she pours herself a cocktail, I wrestle back the urge to tell her, "Hey, what are you doing!" Then I remember she is 24 and I am... not young anymore.

Aging means aches and pains in the morning. It means middle age spread. It means wrinkles and gray hair. And it means you have survived. You survived close calls and near misses. You survived failures and set backs. You have been knocked over, and pushed down, and held down, and stressed to tears. And gotten back up again. You have learned to deal with pain, because pain is as much a part of life as laughter. No one tells you this. You learn it the hard way, the ugly way, the way that leaves seven inch surgical scars that still ache 16 years later when you turn your head to back up the car in the driveway.

Aging is the most amazing thing that can happen. It is proof you lived, even when death was an option. Aging is a gift to be celebrated. Gray hair, scars, and all.

Monday, August 11, 2014

If Suicide Makes Sense

Today the world learned Robin Williams committed suicide. I'm feeling shocked and saddened. I've read comments that he had everything to live for, that he was selfish, and on and on they go. The hard truth is, when someone is badly depressed, everything stops making sense. Everything is dark and the pain is excruciating. I am so sorry Robin was in so much pain. I couldn't help him. Maybe I can help you.

If I had to choose between having a nine hour chest cracking cancer surgery again, or be suicidally depressed again, I would choose surgery. It hurts less.

If I had to choose between 24 more cycles of intense chemotherapy again, or be suicidally depressed again, I would choose chemotherapy. It hurts less.

Deep depression is isolating, and frightening, and so painfully lonely that no love can enter inside. Depression feels like being trapped in a hole so deep no light can penetrate. People flippantly say that, "Suicide is a permanent solution to a temporary problem," but this just isn't true. If you are trapped in a place without light, or hope, or love, feeling like committing suicide to escape makes sense. When you are that depressed, suicidal thoughts are the only light you can find on your own. And that is a scary place to be.

Suicide is an attempt to solve a problem of intense emotional pain with impaired problem-solving skills--Kalafat & Underwood, 1989

 Thoughts of suicide feel like a comfort, and way out of this hellish trap. Suicide is the only way out  you can come up with to make the pain stop. If you are in that place right now, and found this blog because you are suicidal, please understand this: The reason you cannot escape the dark is because someone else has the key to let you out.

You need to ask someone for the key. Tell someone that you hurt inside. Someone who won't laugh it off. Someone who will hear you. You can call emergency services, or go to the hospital. Speak to a doctor. Speak to a crisis hotline. A teacher. A neighbor. A parent. A spouse. A sibling. A friend. The person who hears you has the key to unlock this dark pit.

You don't have the key, and you can't think your way out of depression. You need to ask someone to help you escape. They will unlock the door and lead you to the help you need. The key exists. I know it does, because someone unlocked the door for me. I am alive and well now. It wasn't easy to get better, but I did get better. So will you.

There are medications that can help. Doctors and nurses who can help. There are tools you can learn to help you problem solve. There is hope on the other side of the dark pit. Ask someone for help. Please. I've lost three friends to suicide, and I don't want to lose another friend. If you are here reading my blog, you're my friend. Your life matters to me, even if it doesn't matter to you right now. If you hurt so much inside that suicide makes sense, please get help. Please.

Saturday, August 2, 2014

Good News

We increased April's insulin dose and now she is back to her old tricks.






I never thought I would be glad to see April getting into the garbage. Thanks to insulin, we have our old dog back. I'm a lot less stressed now.

Tuesday, July 8, 2014

Slow and Steady Makes Me Crazy

Yesterday's blood sugar readings:

8:00 -- 509
11:00 -- 478
2:00 -- 482
5:00 -- 537
8:00 -- 486

This morning's fasting blood sugar: 533

The only good news is, these aren't my numbers. They are my dog April's numbers. My dog's blood is turning into pancake syrup. I see these numbers and I want to scream DO SOMETHING! I call the vet and she is worried about April going low.

Low. LOW? Are you sh*tting me? If April had a low, I would have a party in celebration! A low would be welcome news. Treat the low, adjust insulin back one unit, and move on. A fasting BG of 533? All I see is death. I fear I am watching my dog die from under-treated diabetes.

April is still losing weight. At this point I am afraid to walk her around the block because someone will call the ASPCA on me for not feeding her. Her rib bones are sticking out. Her hip bones are showing. I can see her spine. This dog is going to die from high blood sugar and my vet is worried about going low.

Maybe if I didn't know what high blood sugar feels like it wouldn't bother me so much. Maybe ignorance is bliss. I know what super high blood sugar feels like. It feels like you're gonna die. This super conservative approach to April's diabetes is making me crazy.

Slow and steady might win the race, but at least running around in circles feels like doing something. I want to bang my head against the wall. We just adjusted her up 4 more units a day. I hope it's better. It has to be better. I can't take much more of this.

Sunday, June 29, 2014

My Dog Has Diabetes

It's been an overwhelming month around here. Our dog April was bitten by a tick during our trip to West Virginia. She got very sick and I rushed her to the emergency vet at one in the morning.

We had to force feed her for a few days, but she got better. The following week we went on vacation again, to Wisconsin this time. At my aunt and uncle's cottage, April kept rushing down to the lake to drink. She drank and drank and drank. And peed, and peed, and peed.

At home, she started having accidents in the house. The water dish was always dry. I wondered, does April have diabetes? We took our 11-year-old dog to the vet. She weighed 58 pounds. A month ago April was 75 pounds. A 17 pound weight loss in a month!

Excessive thirst, check.
Excessive urination, check.
Weight loss, check.
Always hungry, check.
I know these symptoms. I've been here before. This sounds a lot like diabetes. So, I told the vet, "I think I know what's wrong with her."

The vet said, "What do you think is wrong?"

"I think my dog has diabetes." The vet thought it was a whole bunch of other stuff, but maybe not diabetes. To humor me, the vet checked April's blood glucose. April's blood sugar was 644! No wonder April was feeling horrible. I diagnosed my own dog with diabetes. After a night in the vet hospital getting fluids and starting on insulin, we took our dog home.

It's been a stressful adjustment. April is on NPH insulin, twice a day. Keeping her insulin on one side of the fridge, and mine on the other, was the first thing I did. Also, her insulin is cloudy and mine is clear, so that helps. I prefill two syringes before I go to bed. That way I can tell at a glance if I gave April her shot. Right now giving April insulin is new, but in a few weeks this will become a routine. That's when mistakes can happen. I'm doing my best to head them off.

April is improving. Insulin is magic that way. I've been testing her blood sugar at home using a Onetouch meter. She's ranging from 325-205. If this was me, I would correct. I hate being high. With two shots a day of NPH, I have no way of correcting April's blood sugar. I am trying not to let this bother me. But, of course it does bother me. I know the long term damage high blood sugar can do. I know what high blood sugar feels like. I don't want my dog to feel like that.

Still...

I'm having to adjust my thinking. April's diabetes does not need to be micromanaged like mine does. A weimaraner's lifespan is 12 to 13 years. She is 11. If we treat her diabetes aggressively, April has a year or so to live. If we don't treat it aggressively, April has a year or so to live. I test her blood sugar three times a day to help the vet adjust her insulin dose accordingly. Once we have things dialed in, I won't test as often. There is no need to test her 10 times a day like I do myself. She eats the same food, at the same time, in the same amount, every day. Her blood sugars aren't going to go crazy because of something she ate. Keeping her stress down is important to me as well. She's not a young pup anymore. But, she is still a great dog.

April isn't having accidents and is doing better every day. She likes to snuggle on the couch with her dad and her favorite cat, Fresh Air. She likes short walks in the woods. She's a good dog. A great dog. And now a dog living with diabetes, just like me.

Here are a few pictures of Miss April over the years. The yellow dog is her best friend, Honey. The first picture is from 2003. The last one was taken in December 2013.







Monday, June 2, 2014

Dexcom Darn you!

Dexcom woke me up, beeping at three am. Warning! Warning! You're below 55. Wake up! You're below 55! Beep! Beep! Warning! Warning! Danger!

I opened one eye. The screen said 48. I fumbled for my testing strips and checked my finger. 160. Dexcom!  You woke me up for no reason. Shut up!

I entered 160 in Dexcom and shut it off.

I'm not one of those people who can fall back to sleep after I wake up. My brain starts playing remember when? Only these are never pleasant memories. Why do they come pouring into my brain in the middle of the night? Flick on the Apple TV. Scroll to Netflix. Pick a random documentary on Ancient Egypt. Netflix has them all listed for me. Based on my profile I am fascinated with Ancient Egypt. I'm not. Shows about Ancient Egypt put me to sleep.

I slept for another hour. Dexcom woke me up beeping at four.

Warning! Warning! Your blood sugar is high! I repeat, your blood sugar is high! Danger! Danger! Warning! Warning!

I opened one eye. The screen said 237. I fumbled for my testing strips and checked my finger. 130. Dexcom! You woke me up for no reason again! Shut up!

Twice in one night it woke me up with false alarms. I wanted to throw my Dexcom across the room. I turned on another documentary about Ancient Egypt and fell asleep.

 My alarm clock went off at 5 in the morning.

Urgh! I'm not a morning person. I'm especially not a morning person when Dexcom goes crazy. The first night with a brand new sensor sucks. Hopefully, tonight is much better. Of course, tomorrow I don't have to get up at 5 in the morning. Thanks Dexcom. Thanks a lot. 

Friday, May 30, 2014

When you gotta go

My brother-in-law invited us to visit his cabin in rural West Virginia. For a few days we enjoyed mountains, rivers, waterfalls, winding roads, tall trees, and a billion stars. We even fed the deer on his property. Being there was relaxing. Unfortunately, getting there wasn't relaxing, thanks to diabetes.

Before the trip, I had everything planned. I know because I made a checklist. I also made a checklist of things I was going to put on my checklist. Insulin, check. Back up insulin in case I drop my vial, check. Sets, check. Extra sets, check. Extra extra sets, check. Test strips, check. Extra test strips, check. Dexcom sensors, check. Glucose tablets, check.

I packed our clothes, treats for the dog, our pillows, assorted electronic gadgets, and then I programmed the GPS. The route was simple. A straight shot all the way across Indiana and Ohio, wander into Pennsyvania for a bit, then cut into Maryland and finally West Virginia. Six states. 12 hours in the car.

My husband and I left in the middle of the night, because we are not insane. Leaving in the middle of the night means avoiding Chicago traffic on the Tri-State Tollway and the Borman Expressway. A quick zip and a zigzag and we were flying down the Indiana Tollroad. West Virginia, here we come.

Then... Dexcom alarmed the sound of doom. Blood sugar is rising, double arrows up. 180. 209. 224. 257. 310. What The FRUCTOSE? I corrected. I corrected again, and set a temporary basal rate. What is the one thing you don't want to have while on a road trip? The two hallmark signs of diabetes: excessive thirst and excessive urination.

We were on the Indiana Tollroad when "it" hit me. I had to go. NOW! There are five rest stops in Indiana. There are eight in Ohio. I know because I counted! By the time I walked from the rest stop back to the car, I had to go again. This was ridiculous! A 12 hour car ride extended to a 14 hour trip. Thanks diabetes. Thanks a lot.

Still, the trip was wonderful and I enjoyed being away. It's good to travel. It's good to come home.

Wednesday, April 30, 2014

Goodbye Old Dr. & Hello New Dr.

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

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

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

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

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

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

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

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

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

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

Wednesday, April 16, 2014

Grocery Store Lows Explained

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

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

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

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

The cop got up to leave.

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

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

This is not good.
People are staring at me.
I
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...

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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.


















Tuesday, February 25, 2014

Feeling Older

It's not my birthday, but I'm feeling older today. Maybe it's because I'm waiting for my first pair of bifocals. I ordered them on Saturday and now I'm waiting for the phone call telling me my glasses are ready. I'm looking forward to getting them. I can't see my insulin pump screen. Unless, I drop my insulin pump on the floor, then I can see it just fine.

I had one of those frightening, "Is that a six or an eight?" moments when I was trying to bolus. The difference between 6 units of insulin and eight is a high waiting to happen. Or an epic low. I can't see my pump and it's driving me crazy. It's also scaring me because I can't tell if I have 80 units left in my pump or 20 units right now. When did the print get so small on my screen?

My cats were neutered and spayed last week. The surgery went fine, and everything is going perfectly with their recoveries. However, in the office when it came time to write the check, I couldn't see what I was writing. I feel like I have drops in my eyes from the eye doctor and everything up close is fuzzy, only it doesn't go away.

I'm getting older. My nephew is getting married in August. Thinking about this is making me happy, and amazed. My hair is turning salt and pepper. My hands have wrinkles. It's weird to watch this happening. It's wonderful to watch this happening.

I was seven days shy of my 29th birthday when I found out I had thymoma cancer. Instead of scheduling a 29th birthday party, I was scheduling a sternotomy and resection. All I wanted for my 29th birthday was a 30th birthday. Now I'm old enough to need bifocals. I'm aging. I've lived long enough to show signs of aging. How wonderful is that?

Thursday, February 20, 2014

Dear Miss Manners

Dear Miss Manners,

You recently wrote about diabetes finger pricking in public and suggested we do this in the bathroom.

"GENTLE READER: Absent an emergency, medical applications (like bodily functions and grooming) are properly done out of sight — meaning in private or in a restroom — unless they can be done so surreptitiously as to be unrecognizable as such. 

communications,newspapers,objects,papers,periodicals,publicationsThe technology associated with diabetes is fast approaching this standard, although Miss Manners draws the line at drawing blood. Restrooms exist to provide a proper location for such necessary activities when away from home, and those who use them have no business monitoring the respectable, if sometimes unaesthetic, activities of others."

How about, no. No, I am not going into a germ filled public bathroom to check my blood sugar. I can check my blood sugar without anyone knowing I'm doing it. I don't cut a vein open and wave it around. It's done in a flash and no one knows but me.

The same goes for using my insulin pump. I can dose insulin and it looks like I'm using my phone. Yes, I do these things in public. I do them because I have to. People do all kinds of bodily functions in public: fart, burp, sneeze, cough... No one runs to the bathroom before they sneeze. Diabetes doesn't go away when we go in public. Sometimes a blood sugar test can mean the difference between walking out of a public place and leaving in an ambulance.

However, what upset me most about what you said is this: you don't have diabetes, and yet spoke as if you know best how to manage it in public.

There is a phrase in the disability rights movement that goes like this: "Nothing about us without us." That means make no assumptions, or decisions, without first discussing it with people who live with disabilities.

I live with diabetes. I'm open about it. So are many other people. There is a group called Diabetes Advocates you can contact with questions about diabetes issues. Learn about our issues. Become educated. Then you can speak about manners.


Sincerely,
Marie Smith

Wednesday, February 12, 2014

On Health Insurance Denials



(Photo by Mike Durbin)

My friend Mike has been dealing with health insurance denials. I've been there, too. A few years ago, my wheelchair was denied as not medically necessary. I was overwhelmed with frustration. Why is it that the doctor who knows me and my needs can be overruled by an insurance company -- people who don't know my needs and have never actually met me? Why does this have to be so frustrating?

A few months ago I ran out of insulin before my prescription was due to be refilled and my insurance company said no. I had 28 units left in my pump and according to my insurance company that was supposed to last three days. Um, no. A few phone calls later, everything was straightened out, but worrying about it raised my blood sugar.

Insurance company hoop jumping frustrates me so much sometimes I want to show up in person at my insurance company and say...

Hi. According to your files, I am Client XJ83-56, but my name is really Marie. I'm a person. I'm not a a collection of diagnoses, or data points on a chart. I'm a human being with a family who loves her. I've noticed that some decisions regarding my health appear to be automated. A vial of insulin will last exactly 17.2 days. Insulin pump sets need to be changed every 3 days. Insulin test strips will last 30 days. These data points would work perfectly if I was a robot. I'm not a robot. I'm a human being.

I'm a human being who gets her insulin pump tubing wrapped around door knobs and yanks out a brand new set. I'm a human being who has had a cat chew through an insulin pump tube. I've dropped an insulin vial on the hard floor and watched it shatter. I've spilled an entire vial of test strips in a bowl of soup. I've done these things because I am a human being who does not live a perfect life.

My family pays for health insurance, which is not like car insurance at all. Car insurance is only valuable if something goes horribly wrong. Most of the time, nothing goes wrong, but I keep paying my premium anyway just in case. However, my automobile is a choice. If it gets in a wreck, I can choose to file a claim, or I can junk it and get a new car. Health insurance is different. My pancreas broke down. My nerve/muscle junctions broke down. I can't get a new body. Until cures are found, I have to do my best to live with dignity and meaning despite broken body parts. It is not easy.

Decisions you make about covering my healthcare can make the difference between living a life with dignity, or a life in agony. Now that you have seen my smile, and shaken my hand, will you still treat me like a file number? A broken automobile? Or will you treat me like a human being?

Monday, January 20, 2014

Google Contact Lenses?


 

Google develops contect lens glucose monitor: ​This undated photo released by Google shows a contact lens Google is testing to explore tear glucose.I saw the Google contact lens glucose monitor. At first, I was like, Bionic Robot Eyes! Cool, sign me up. But, then I started wondering...

1. What about accuracy? Yesterday my meter said 205 but Dexcom said 97.

Which is right? What do I do? Correct or eat a snack? I need the right information and it frustrates me when I can't get it. (In case you were wondering, I washed my hands and re-tested and got 111. When in doubt, wash hands and retest.)


2. What about when I'm sleeping? My Dexcom wakes me up and beeps when I'm too low, or too high. That below 55 alarm has saved my life.

3. What about driving? What if a distracting alert happens in my lens when a kid runs into the street after a ball?

Those were three serious concerns I had right away. But, even if all those questions were answered, these lenses would still give me the heebie-jeebies.


The idea of wearing these things make me seriously paranoid.

First off, these lenses are being made by Google. Not a pharmacutial company, but by the people who created Google Glass. What is preventing Google from putting something else in these lenses that transmits information about how my blood sugar is doing to an unknown third party?

Following that paranoid rabbit hole a little further, would these lenses be able to spy on me? From what I understand, Google is planning on integrating technology that relays information from the lens to my smartphone. How do I know what else is being transmitted? Are the lenses sensing what I'm seeing? Products I buy? What I'm watching on TV?

I know it's tinfoil hat territory, but it is also the world we live in. I choose what I put online. Could these lenses be used without my permission to monitor my habits and record the data?

Google provides information. Not just useful information for me, but useful information for advertisers.

Alert: Client XJ0461 just surfed for information about glucose tablets, try to sell her diabetes swag, quick!

Client XJ0461 gets side bar ads for meters, pumps, and strips, and diabetes treatment plans...

This has happened to all of us for years. It happens so often we put ad blocker on our computers so we don't notice being tracked. This is why the Google glucose monitoring contact lenses give me pause.

Imagine I have wireless lenses in my eyeballs that are transmitting data. My eyes lock on a cookie. I reach for the cookie, and...

And ten members of the food police show up at my house. "Warning! Warning! Warning! Our sensors indicate you are about to eat a cookie."

Or, maybe ads for cookies will flash on my contact lenses. Or cookie ads will show up on my iPhone. Hello there, Marie. We noticed you like cookies. Try our soft, delicious chocolate chip cookies. They're made with 100% natural spyware.

Yikes! There is something very creepy about wearing lenses that transmit data from my eyes. It feels like something out of a spy movie and I'm not sure if I'm the hero, or the dupe. So, I'll go ahead and stick this tinfoil hat on my head and say it... Yeah, I'm a little paranoid about the Google glucose monitoring contact lenses.

Truthfully, I don't even like the camera on my laptop staring at me. I struggle against the urge to cover it with tape, because even I know that's just crazy. Although now that I'm thinking about it, the little hairs on the back of my head are standing up.

Someone is watching me through the iSight camera.
Relax, no one is watching you. You are so damn boring they would fall asleep.
Someone is watching me.
No, they aren't.
They are! They are! I just know it. AHHH! Shut it down! Shut it all down, pull the plug and stick the computer in the garage!

Given how I feel about the camera on my laptop, I can't imagine wearing contact lenses that transmit data, any kind of data. It's too freaky for me.

Now if you'll excuse me, I'm going to poke my finger, bleed on a test strip, and check my number. Then I will proceed to bolus and devour a chocolate chip cookie while I am 100% certain no one is watching.

C is for Cookie that's good enough for me...

 

Monday, January 13, 2014

Normal People Problems

I've got a normal problem for a change. Last week when it was -17 degrees outside, I went outside and tried to start my car. Click, click, click... The engine wouldn't turn over. Try again. Click, click, click... Nope.

Get out of the car and go back in the house. Warm hands on the dog.

http://officeimg.vo.msecnd.net/en-us/images/MB900355883.jpgMaybe it just needs to charge. I brought the emergency jump start battery to the car. I pulled the lever inside the car to open the hood.  The worst part was finding the lever under the hood to unlatch it the rest of the way. My fingers burned like I touched a hot stove. Prop open the hood, attach the red jumper cable to the red battery terminal. Attach the black cable to a piece of frozen metal. Push the button. Charging.

Get out of the driveway and go back in the house. Warm hands on the cat.

Go back outside into the Polar Vortex. Feel like I've dropped on Mars without a space suit. Get in the car, sit on the rock hard car seat, turn the frozen key. Click, click, click.

Get out of the car and go back in the house. Warm hands on other dog.

Repeat this several times. Finally, I gave up. The car battery is dead and it's way too cold to replace it with a new one. A few days later my husband and I wrestled the dead battery out of the car, went to the store for a replacement. Ka-ching! Ow! That was expensive. We went home and wrestled the new battery in place. I turned the key in the ignition... VAROOOOM!

Yay!

While the car was warming up, I noticed a trail of exhaust coming out from under the driver's side. Um, I don't think the car is supposed to smoke like that. But, it's probably steam from melting snow, so I'm good to go.

Two days later, I started my car and instead of the happy VAROOOM, my car made a roar loud enough to be heard three counties away. VAROOOOOAAAAAARRRRRR! OK, maybe that smokey trail under the car wasn't just steam from melting snow after all. VAROOOOOAAAAAARRRRRR! VAROOOOOAAAAAARRRRRR! OMG, I have the world's loudest Ford. Something is wrong. Very wrong.

The world's loudest Ford is at the shop getting a new "flex pipe." Or, at least that's what the mechanic told me. "The flex pipe is broken at the flange." He could have told me, "The snargle-fargle is broken." I wouldn't have known the difference. Still... Ka-ching! Ow! That was expensive.

In the middle of all this, I kept thinking, "Wow, I have a normal problem." Car trouble happens to everyone. It's not, my blood sugar is soaring at three am and I'm too tired to deal with it. It's not, chemo is making me feel horrible. It's not, my left arm won't move from MG. Nope, I've got a normal people problem. Even though it's expensive, at least it's a problem everyone can relate to for a change.



Friday, January 3, 2014

Chronically Adapt

This morning, Chicagoland rediscovered what Lake-Effect Snow means. Wave after wave of snow fell along the Chicago side of Lake Michigan, sometimes as much as two inches an hour. When it is snowing that hard, it’s hard to clean off the car. Clear one side, go around to the other side, and the first side is buried in snow again. Shoveling the driveway is an exercise in futility. The municipal snowplows can’t keep up, either. We have 13 inches of snow, which may not seem like a lot to some of you. In Chicago, we usually get 3 inches at a time. 13 inches is an event.

This morning my daughter had to get to work two towns away. Together we dug out the car, and the driveway. Into a blinding snowstorm, I backed out of the driveway. The moment I turned the car onto our un-plowed street, I realized how deep the snow was. I had no traction and the back end of my van skidded. My heart was already in my throat and I hadn’t even traveled more than a yard from my driveway. Driving Evelyn to work normally takes 16 minutes. Today it took 40.

As I steered out of skids, struggled to see through the snow, and did my best to stay on the road, I realized how much driving in bad weather reminds me of life with chronic illness. I can’t always tell what is up ahead. Will diabetes complications sideline me? What about side effects from long term chemotherapy? My visibility is limited and I have to deal with the fear of not knowing what is up ahead. I do my best to pace myself and focus on what is in front of me right now. I will deal with what is around the bend when it comes.

Just like driving in the snow, I have to steer my entire life with calculated precision. Too much insulin and I will go into insulin shock and die. Too little and I risk DKA and death. Every day I make adjustments to stay in range, but I don’t always get it right. A few days ago I had two below 45 lows in the same day. The next day my blood glucose was 356. Like driving in the snow, losing traction happens to me. Then I risk skidding into an emotional tailspin.

I want so much to stay in range at all times, but I can’t. I can’t control a bad set, or funky insulin in my pump. Highs happen. Extra insulin to lower high blood sugar is called a correction bolus, not a punishment bolus. I need to remember this and not get down on myself. Even though it is difficult sometimes, I don’t always screw everything up.

When my blood sugars are in range for days on end, and everything is working smoothly, I feel like I’m driving on a clear patch of road. The plows came by and got rid of the snow. Salt dried up the blacktop. The sun is out in my life and all is well. But, even then, it’s still winter and I still have to be on guard, because trouble is as close as my next meal.

Maybe next time I eat, the bowl of soup will have less noodles than I predicted. I’ll use too much insulin to cover it and go low... again. Or maybe before bed tonight, I’ll misread the label on my snack and confuse sugar grams with total carbs. I’ll figure out my mistake around 3 am, when my blood sugar and the time are the same… again. Even on a clear day things can go wrong.

The only predictable thing about driving in bad weather is, it’s going to suck. The only predictable thing about living with chronic illness is, it’s going to suck.  Knowing that diabetes sucks, and MG sucks, reminds me that it’s OK to get upset about it. After all, diabetes is upsetting. MG is upsetting. I have every right to feel upset over upsetting things.

I found out this morning that driving in a blizzard sucks. I couldn't stop the snow, so I adapted. I can't stop chronic illness, so I guess I'll have to chronically adapt to it.

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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