Tuesday, September 1, 2015

#DOCBurnout2015

I'm burned out. I've blogged about chronic illness. I've written two books about chronic illness. Trying to come up with something new to say makes me feel tired before I even start.

Right now I am recovering from losing my dog. I think about dogs all day. I think about how much I miss my dog. I think about how much I want a standard poodle puppy. I think I'll name her Clara. Or Claudia. Or Meadow. Or Clover.

I am thinking about dogs all the time. What I don't think about is diabetes management. I don't think about MG. I don't think about the intertwining craziness of having both conditions at the same time. Then I sit down to blog and there's no spark left. I've said what I wanted to say. Can I talk about something else now?

I get burned out when the DOC starts squabbling about Type 1 vs Type 2. The Crossfit dust up was the latest. It made me wonder if advocating makes any difference. Comedians still use diabetes as a punchline. People still post pictures of desserts with captions about giving themselves diabetes. Trying to use a unified voice to counter these misunderstandings leads to more T1 vs. T2 bickering. And I get burned out.

I've backed off of blogging because I've been sad. It's hard to blog about the joy in my life when I am sad. My service dog died. My husband's elderly dog has diabetes and Addison's disease. We are getting to the point where 16u is too little and her BG is in the 400's. 17u makes her crash into the 20's Have you ever seen a dog have a seizure from low blood sugar? It's heartbreaking. I know how to rescue April from lows, but every time I do it, I question if it is ethical. Just how much medical pounding does one dog have to endure? She's my husband's dog. I care for April, but the decisions belong to him, and he isn't ready to say goodbye.

I'm sad. I cry all the time. Blogging about diabetes and myasthenia gravis, encourages me to become Our Lady of Perpetual Uplift. Only I'm not uplifting. I'm just me, and right now I hurt inside.

Thursday, August 27, 2015

17 and 10

I'm 17 years cancer free. If my scar was a person, it would be a senior in high school. My scar would be borrowing my car and bringing it home without putting gas in the tank. My scar would be grounded from driving. My scar would be standing in the kitchen giving me sass because I won't let it stay out all night with its friends. Ha! 17 years! Wow.

Even more amazing to me is I'm celebrating 10 years of chemotherapy. No, not 10 years since I finished chemo. Ten years of continuous chemo.

Every so often, I'll come across an ignoramus on the internet (shocking, I know) who claims that chemotherapy is nothing but poison. Cancer doesn't kill people, chemotherapy does. These are the same people who claim diabetes is curable with okra water. Or was it lemon and baking soda? Or is it apple cider vinegar? Colloidal silver? No, silver turns people blue.

Before I started chemotherapy, myasthenia gravis wrecked my life. I lost the ability to chew and swallow. I couldn't hold up my head. I couldn't walk. I slurred my speech. MG compromised my ability to breathe. I was bedridden. My life was a living hell.

Then in August 2005, I started moderately high dose chemotherapy. With weeks, the antibodies circulating in my blood that attack my nerve/muscle junctions started dying. My muscles got stronger. I could chew and swallow again. I could hold up my head. I could walk. I could speak. I could breathe. I was no longer bedridden. My life opened up wider and wider each week.

I was on infusions for 23 cycles. We hoped it would push my MG into remission, but after 18 months, the experiment was a failure. MG roared back to life between infusions. In February 2007, I switched from infusions every three weeks, to weekly pills at home. My weekly pill cocktail keeps MG from destroying my life.

I know exactly what would happen to me if I stopped treatment. The chemo knocks down the antibodies in my blood, then they rebound by the end of the week. By Monday afternoon, I feel MG weakening my body. Tuesdays chemo kicks my ass. Wednesdays, I kick MG's ass.

Just how much chemo helps me became obvious when I skipped a week. I had a severe cold. I needed my immune system to be strong enough to knock it out, so I didn't want to take chemo. After missing a week, I sat down to eat a blueberry yogurt. I held a plastic yogurt cup in my hand and a plastic spoon in the other. Everything was going fine, until the plastic spoon was too heavy to lift. I stared at it in shock. How is it possible to be so weak a plastic spoon feels as heavy as a car?

My brain screamed at my arm, "Quit screwing around and pick up the damn spoon. It's not heavy! A newborn can pick up a plastic spoon."

My arm did not move. The spoon was too heavy to lift.

I am not paralized. I can feel my body. But that stupid little gap where nerves tell muscles to move, failed. No matter how much my brain cursed and swore, the little plastic spoon was too heavy. Tears filled my yogurt container. I bolused for the yogurt and I was too weak to eat it. What a lonely moment that was for me.

Who knows what that feels like? Who knows what it is like to be so weak a plastic spoon is heavier than a box of bowling balls? Fourteen in a 100,000 people have MG and I feel so alone. Sometimes I feel like I live on the wrong planet. A moon astronaut in reverse, trapped on a world where gravity is too strong for my body to function. And the loneliness I felt as a I stared at a plastic spoon overwhelmed me.

Then I remembered chemo day. I remembered I would take a nasty pill that tastes like a rotting fruit. I'd take chalky pills, and flavorless pills. I'd curl up in bed and sleep most of the day. But, after that... After that I could use a plastic spoon again. I could cook dinner for my family. I could walk April the weimaraner around the block. I could drive, and eat, and play the cello. I could have arms and legs and a jaw that moved. Chemo would fix my misery. Chemo would give me back my life.

Chemo is a gift! It's a toll booth on the highway of life. It's not a disaster. It's a gift that makes everything worthwhile.

Ten years. Ten years. Ten years. I can dress myself. I can feed myself. I can talk. I can brush my hair. I can play my cello. I can drive. I can go, see, do, walk, play. I can. I can live. Insulin and chemo made my life better in thousands of ways, millions of ways. I am so grateful I have no words.

I am sitting here, 17 years cancer free, and 10 years as a chemo warrior. Right now I am aware that little things matter. Like, being able to lift a plastic spoon, and eat yogurt instead of tears.

Sunday, August 2, 2015

Loud Silence

On July 22, my dog died.

A Little Bit O' Honey CGC, SDX August 26, 2002--July 22, 2015

I sat here, staring at my computer for 20 minutes, unable to come up with the next thing to say. I'm a word smith. Words are how I make sense of things. Here I am, lost for words. I'm lost without my dog.

My black cat, Sunshine, is sitting on a chair and looking out the window. I'm glad she is in the bedroom with me. Cats are family, no question about it. However, my relationship with my cats is not the same as the relationship I had with Honey. When my cat jumps up on my bed in the morning, she purrs and purrs, rubs her head on my hands and chin. Is she affectionate because she loves me, or because the food dish is empty? After I fill the bowl, Sunshine eats and disappears. Affection is a coupon exchanged for food.

When Honey jumped on my bed to see me, it was to be with me.
She followed me from room to room, not because she wanted anything. Honey liked being with me. She liked walking beside me, staying beside me. When I was sick, my family had to force her to go outside. As soon as they let her back in the house, Honey jumped on my bed beside me. Nurse Honey. Gentle Honey. Faithful Honey. For 12 years she was with me. Now, I am alone.


Steve still has April. Our weimaraner living with diabetes is still here. I still check her blood sugar (464) and correct her with NovoLog. I wake up in the middle of the night and check her blood sugar (38) and rescue her from the Sugar Reaper. I let her out. I let her in. I put food in her bowl, water in her bowl, insulin needles in the folds of skin between her shoulder blades.

I care for April, but, she isn't our dog. April is Steve's dog. It's Steve she wants when it's time to cuddle with someone. She follows Steve from room to room. April is a great dog, a sweet dog, a funny dog. I love April. She's just not my dog. My dog died.

Steve is on the couch, watching videos on his computer. April is stretched out next to him. I am in the bedroom with the door shut. I have a pillow on my bed where Honey used to sleep. No one is curled up on the pillow. No one is cuddled against me with her chin on my ankle. No one makes little wuffling noises when I open a bag of crackers. It's the silence that reminds me Honey is gone. I never realized how loud silence could be. Or how much it hurts to say goodbye.

Saturday, June 27, 2015

A slow goodbye

My dog is dying of cancer. When I brought her home 13 years ago, and she sat in a sunbeam in the backyard, I knew this day would come. But of course, that was years, and years, and years in the future. I had a puppy. The dog I whined, begged, and pleaded for was finally home.

We named her Honey because of her yellow fur. No, I just lied. We named her Honey because when I picked up the puppy and held her, I babbled, "Oh honey, oh honey, oh honey."

Steve said, "That's a good name for the dog."

"What is?"

"Oh Honey, oh Honey, oh Honey!" he teased.
I didn't care. I had my puppy. The dog Steve said we were never, ever, ever, quit asking, no, never getting, was home in my backyard. And I was happy.

Honey grew, as puppies all do. She went to obedience school and earned her Canine Good Citizenship. Of course, I dressed her in a cap and gown and took lots of photographs. When I got Honey, my MG was in remission. Then one afternoon in January, my hand was too weak to hold a cup, and I knew the nightmare was starting all over again. And I was sad. But, Honey was there.

I dropped my pen on the floor in front of my puppy. I thought she was going to chew it into bits, but she did the most unlikely thing. She picked up the pen and brought it to my hand. Then she sat at my feet. Thank you, Honey. Good dog. If Honey can pick up a pen, without any training at all, what could she learn how to do?

This was when Honey became a service dog in training. Being a service dog was what Honey was born to do.

Unload the dryer. Open the refrigerator, get a pop, bring it through the house to my hand, return to the kitchen, close the fridge door. She learned to pick up anything I dropped: a hair brush, a quarter, a credit card, and give it to me. She learned to do what would help me most.

Even if it was just keeping me warm when chemo made me bald, cold and exhausted.


She stayed with me when I started needing a cane.

And a wheelchair.


We performed together on stage. While I played the cello, Honey stayed on a mat by my feet. She snoozed while I spoke and played for audiences big and small. Then, on cue, she strutted her stuff for the audience. She let them know what a service dog can do. Honey retrieved keys, a credit card, a pen. She showed adults and children how to approach a service dog, and why not to pet them. She taught hundreds. She taught me.

Honey taught me to be bolder, because she wouldn't listen to an uncertain leader. She taught me to be brave. She gave people something more interesting to stare at than the lady in the wheelchair. And she was with me. Always.

Now she is lying on the floor. I hear her breathing hard and heavy. She has cancer. It spread to her lungs. Honey is still helping me, even now. I dropped my glucose meter on the floor. She picked it up and gave it to me. Here you go. You dropped this. Aw, thank you, Honey.

About a month ago, the vet said she had two months to live. The tumors in her lungs look like a thousand snowflakes. Her breathing is raspy. She pants a lot from the prednisone. Other than that, she is still herself. Honey still likes eating, which is good. She likes ice cream cones stuffed with peanut butter and dog treats. She liked the hamburger and french fries I brought her. And the Dairy Queen ice cream cone with sprinkles. She likes all the spoiling I'm doing. She's been my helper dog. I'm honored to help her right back. Honey is a happy dog, but sometimes she has a tough time breathing when she lies down.

Truthfully, I think I am suffering more than she is. Honey just had a dog biscuit. Not wanting to share it with April, she took off running from the kitchen to the living room, with that cute little scoot of hers. No limping. No crying. Still doing things she loves to do. Right now she's on the bed and eating Ritz crackers. Honey keeps making little wuffling noises, trying to see if I will give her any more.

Honey isn't ready to say goodbye. I'm not ready, either. It's just, I'm aware of what is coming, and it's breaking my heart. So, I am focusing on making each day as magical as possible by spoiling her.

If you have any dog spoiling ideas, please leave a comment.




Saturday, May 16, 2015

Diabetes Blog Week: Favorites and Motivations


Here’s today’s prompt: Favorites and Motivations.  If you have been blogging for a while, what is your favorite sentence or blog post that you have ever written?  Is it diabetes related or just life related?  If you are a new blogger and don’t have a favorite yet, tell us what motivated you to start sharing your story by writing a blog? Click for the Favorites and Motivations - Saturday 5/16 Link List

One of my favorite posts was after a diabetes event in Iowa. It summed up my experiences being diagnosed with diabetes as an adult.

***

Differently the Same

I was at TCOYD in Des Moines Iowa over the weekend. Bea drove us from Illinois to Iowa in George the Beetle. We listened to The Beetles and the songs are still stuck in my head. I got a chance to meet several people living with diabetes. It was fun. Sitting together at a long restaurant table, seeing everyone else test their blood sugar, use pens or pumps to dose insulin, made me feel less alone. It was like summer camp for grown-ups.

While I was laughing and listening I realized so many people grew up living with diabetes. They found out when they were five, six, eight. l found out I had diabetes at 42. While we were counting carbs and figuring out insulin doses, I realized our initial experiences with diabetes couldn't have been more different.

I wondered what it would be like to grow up with diabetes. The idea that they "didn't know any different," doesn't ring true to me. Kids know more than they let on. Growing up with diabetes in the way must have been challenging.

It made me think of trees that grow through fences.



The fence couldn't stop the tree from growing. Diabetes didn't stop my friends from growing up, either. They grew up around diabetes. They grew up with all the needle sticks and glucose tests. Highs and lows knocked them down, but they got back up and kept going. They share a familiarity with diabetes that I will never have. I didn't grow up with diabetes. I spent the first 42 years of my life without it.

Diabetes arrived in my life like this:



Like a sudden storm, diabetes knocked me over and shocked me down to the core. I don't have strong roots that nurtured me as a child with diabetes. I don't have my parents to shield me from the uglier realities and worries about complications. I have to learn to live after a storm and reinvent how I go about doing this. It is a tough task.

During dinner I realized how differently the same I am from my friends. Adjusting pump settings, trying to determine how many carbs are in the Cajun food and laughing, I can do with everyone. Adapting to a new life with diabetes? That is a different task. Thanks to the DOC, I don't have to face it alone.

Friday, May 15, 2015

Diabetes Blog Week: Crazy Stories Wildcard


I started playing Assassin's Creed Black Flag after dinner. I got kinda engrossed in being a pirate. "There's booty to starboard, Captain". Sheesh, I'm starting to sound like a pirate. OK, that's it. I gotta put the controller down and blog. And... and crap, now it's almost Saturday. BLOG WEEK! Oh no!

Sorry folks, I'm taking a wildcard.

Diabetes can sure bring some crazy moments.  So tell us your Top 3 craziest D related stories!  If you can't think of three, don't worry.  We're just as happy with one or two . . . .   (Thank you Maria M of My Life: A Long Trip with T1D for this topic.) Click for the Crazy Stories Wildcard Link List.

This is a re-post, and no doubt the craziest thing that has ever happened to me because of diabetes. Enjoy the laughs.

****

How NOT To Insert a Dexcom Sensor

A Dexcom 7 sensor insertion requires some finesse. Bill 1 Happy Diabetic and Kerri of Six Until Me do a fantastic job of explaining the process. As you can see from their examples, a Dexcom Sensor insertion is a simple process. Well, it is simple, assuming the person inserting it is not me.

Bill and Kerri have helpfully illustrated exactly what to do. I often suspect my function in life is to serve as a warning to others, so with that in mind let me tell you how Not to insert a Dexcom 7 sensor.

Step 1. Begin With Skin Adhesive. Skin Tac Skin Adhesive comes in small pouches that look like larger versions of alcohol pads. When you pull them out of the pouch they will feel similar to an alcohol pad. This is a devious trick. This stuff makes flypaper seem slicker than Teflon.

Once Skin Tac comes in contact with human skin it becomes stickier than the La Brea Tar Pits. You want to swab this adhesive on your skin where the Dexcom is supposed to get stuck. What you do not want to do is get this adhesive on your hands. Do not, under any circumstances get Skin Tac on your fingers or hands. And exactly how do you swab adhesive on your skin without getting it on your fingers? By using your other two hands, of course. However, if for some odd reason you only have two hands proceed to Step 2.

Step 2. Remove plastic locking device from Dexcom inserter. Because of Skin Tac the lock will instantly get stuck to your right index finger. All attempts to shake it off will only get it stuck more firmly. Flailing is of no use. Simply ignore the roughly three inch piece of hard plastic adhered to your hand. You will get used to it in time.

Step 3. Remove white backing from your Dexcom sensor to reveal the sticky bandage. White backing is now stuck to your left thumb. Try to ignore this as well.

Step 4. Place Dexcom Sensor on top of now extremely sticky skin adhesive. Using your left big toe, smooth down the bandage. You cannot use your fingers because they are now webbed together in a club.

Step 5. Do not remember to pinch up your skin. Instead, place your thumb on the plunger and jam that 26 gauge insertion needle right on in. After you pass out it won't hurt a bit. Before you pass out you will probably look like this guy:


Step 6. When you regain consciousness, let go of the plunger and pull up the ring shaped collar on the insertion device. Pulling up the collar is the only way to get the 26 gauge harpoon out of your skin. Pulling up the collar is quite easy until you realize your hand is adhered to the plunger with Skin Tac! You're stuck! How is this possible? This didn’t happen in the demo!

Step 7. Let go of the plunger. It’s OK. It’s OK. You can do this. Don’t panic.

Step 7. Let go of the plunger.

Step 8. Let go of the plunger.

Step 9. Appeal to deity of your choosing to assist you in letting go of the plunger.

Step 10. Cry.

Step 11. Take a deep breath. Yank your hand away from the plunger. Ignore ripping sound. Ignore painful tug from Dexcom Sensor, too.

Step 12. Place fingers under the collar and pull up. There. The needle is out. You did it!

Step 13. Now, let go of the collar.

Step 14. Let go of the collar.

Step 15. You can’t let go can you? You’re stuck! You’re going to be stuck like this forever. And ever. And ever! And ha ha ha! Ha ha ha ha! And… They’re coming to take me away….

Ahem…

Step 16. Rip hand away from collar and let go of insertion device. Squeeze tabs and pull insertion device out of your Dexcom Sensor bandage. While you are doing this a thought will occur to you. Removing the insertion device would be a lot easier to do if the Dexcom wasn’t attached to your skin. Resist temptation to rip off the sensor and unhook it the easy way. If you squeeze the tabs and yank the insertion device upward and outward, it can be removed. Just ignore the pain.

Step 17. Place the gray sensor in the slot. Yank your sticky thumb and forefinger off the gray sensor. Lift up on tab A while pushing the sensor in slot B. Turn around twice, do the Hokey Pokey. Push Tab A up until you hear a click. Twist off tab A.

Step 18. You’re all done. Start sensor on Dexcom.

Step 19. Pour stiff drink.
 
 OK, maybe I exaggerated slightly. But, I really did manage to glue my hand to the insertion device and I did forget to pinch up my skin. It's my job to make stupid mistakes so you don't have to.

A tip for using Skin Tac: never touch the pad. Use a glove or even hold a corner of it with an alcohol pad or Tac Away pad while you prepare your skin. I learned the hard way that touching the Skin Tac pad creates webbed fingers. You don't want to get your hand stuck to the insertion device. Trust me on this. Just... Trust me. OK?



Thursday, May 14, 2015

Diabetes Blog Week: Changes




Here’s today’s prompt: Today let's talk about changes, in one of two ways.  Either tell us what you'd most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people's perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you? Click for the Changes - Thursday 5/14 Link List.

As far as changes to how I manage my diabetes, May 14 is a special day. On May 14, 2012, at exactly 4:44 pm, I started pumping insulin.

This is XPU Mark I, my first insulin pump. I named her XPU because she is my eXternal Pancreatic Unit. When I started pumping, I had no idea how much it would change my diabetes management.

I know I am supposed to write about how pumping lowered my A1c. Or, how pumping helped me with my dawn phenomenon. It did both of those things, but that's not the biggest change.

The biggest change is, well... OK, we're friends, right? I can be completely honest, right? Deep breath. Here comes the hidden truth.

Good evening, welcome to Scatterbrains Anonymous. My name is Marie S. and I am a scatterbrain. When I was using MDI to control my diabetes, I did my best to keep my insulin pens separate. The bright vivid orange pen is NovoLog. The deep green pen is Levemir. The manufacturer probably assumed that the difference in color would be sufficient enough to prevent error. They did not consult me.

What I needed was for the robot from Lost in Space to pop out of the NovoLog Pen and shout: Danger, Will Robinson!



This might have prevented an epic scatterbrain mistake. A few weeks before I started pumping, the inevitable happened. I grabbed an insulin pen and injected a great deal of what I assumed was Levemir. Only, it was NovoLog. A whole lot of NovoLog. I really screwed up. When I noticed, I said something that rhymed with Oh puck! That was not my first mistake mixing up two insulin pens, but it was my last.

As a scatterbrain, I pump for safety reasons. Using only one type of insulin prevents me from being a danger to myself. All day, every day, NovoLog is in my pump. I don't have to look for the right pen. I can't lose my insulin. I cannot lose my pump because of the tubing.

As much as I like the design of the OmniPod, I cannot be trusted with something as critical as a meter remote. It would get lost, probably within an hour after I got it. An hour? Who am I kidding. It would get lost the second I opened the box. My pump tubing is my safety line, and I'm grateful for it.

Mixing up my two insulin pens is what drove me to seek help with Scatterbrains Anonymous. Since I've been a member, I've learned I am scatterbrained because I am physically here, but mentally elsewhere. My name is Marie S. and I am a scatterbrain. This, above all other reasons, is why I pump.

XPU Mark I had an unfortunate accident and was replaced with XPU Mark II. My new pump is an Animas Vibe, XPU Mark III.

Pumping has changed my life for the better. I am less fearful of making a mistake. If I can't remember if I gave myself a bolus or not, I press a button and see my insulin on board. Or, I click my history. My pump remembers things for me, so I can keep my scatterbrained self safe.

Now, all I need is a robot to follow me around, making little notes about where I put things. Marie set her phone on top of the washing machine. Marie set her iPad on the kitchen table. Marie left her purse on the bedside table.

Robot? Where is my phone? Your phone is on the washing machine, right where you left it. Robot? Where is my iPad? Your iPad is on the kitchen table, right where you left it. Robot? Where is my purse? Your purse is on your bedside table, right where you left it. Robot? Where is my brain? Your brain is scattered across fifteen known galaxies. Ah, progress.


Wednesday, May 13, 2015

Diabetes Blog Week: Clean it Out


Here’s today’s prompt: Yesterday we kept stuff in, so today let's clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you're mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?  (Thank you Rick of RA Diabetes for this topic suggestion.) Click for the Clean it Out - Wednesday 5/13 Link List.

I have a glucose meter collection. None of them have batteries. I don't have any strips for them.  I have a stack of dead meters because... Well, I actually have no good reason to keep them.

Sooooo, that's it then. Yup, I have a collection of used, dead meters. They aren't going to sprout batteries, or grow new testing strips. So, yeah, I, er, have a glucose meter collection, and um, what else can I say about that? Excuse me while I get a trash bag.

Stupid meters. Should have thrown these out years ago. iBGstar. Doesn't fit my phone anymore. What's this one? A meter remote from my last insulin pump? Great. That's useful. Here's a One Touch Mini I stepped on when I was getting the vacuum cleaner. What's this? Some kind of Accu-check...

Man, that post was rough. What did I keep all those for? What will people think of me? If only I could come up with some kind of distraction.

Ladies and gentleman, Mr. Conway Twitty.


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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