Friday, July 27, 2012

Technical Difficulties



The Dexcom read 71 with a rapidly falling blood sugar. My meter read 152. Which is right? What do I do? I sat there laughing at my technology for a while. At least one of these devices was completely wrong, but which one? Could it be both devices were wrong and my blood sugar was really 124?

I tested and re-tested. Dexcom fell to the 60's while my meter stayed almost the same. I Tweeted my conundrum and got some replies from the DOC. Maybe split the difference? Dexcom buzzed again. It took me a while before the obvious solution came to me: Search your feelings, Luke. Forget what the meters were telling me. What was my body telling me?

My heart was beating faster than normal. I felt sweaty. I felt a little hungry. I felt that odd empty sensation in my chest that I get when I am going low.

I felt... Low. 

I counted out 15 Skittles and treated for a low. Fifteen minutes later my heart wasn't pounding. I didn't feel sweaty any more. The empty odd sensation was gone. Maybe Dexcom was right and my meter was wrong? Maybe my meter was right and my Dexcom was wrong? I'll never know the answer, but I think I learned an important lesson. My own body trumps technology. Next time I get ambiguous readings, I'm going to shut my eyes and tune in to how I feel.

A few minutes ago my Dexcom read 111. I tested. My meter read 111. W00t!  Thank you for your patience. We now return you to your regularly scheduled life.

Wednesday, July 25, 2012

One Year With Diabetes

Today is my Dia-versary. A year ago today I was in the hospital. I had an antibiotic resistant infection in my tooth and a blood sugar of 380. I can't say it was the worst I have ever felt, because it wasn't. The day after cancer surgery was the worst I ever felt. Still... It was tough.

Nurses came into my room and explained things about diabetes. Several of the nurses had diabetes themselves, so they were helpful. I met the CDE and she explained even more. I felt like I had mittens on my hands when I held an insulin vial for the first time. I didn't practice injections on a pillow or an orange. I gave myself my first injection with a syringe. It was terrifying, but I did it. And I did the next one, too.

I learned to use a glucose meter. I learned to pick food off the hospital menu using carb choices. My meals were limited to 5 carb choices. I think about that now and just laugh. 75 grams of carbs at one meal is rare now. In the hospital I worried a lot. I worried about Thanksgiving and Christmas. Oh and Halloween. Was I doomed to a life choking down sugar-free food? Did I have to trade cookies for kale and cupcakes for tofu?

I spent a week in the hospital before I was finally well enough to come home. After greeting family and pets, I stood in the kitchen and opened the pantry door. Noodles. Popcorn. Cans of this and that. How many carb choices is a bowl of cereal? How many carbs are in this thing? Can I eat that? What about these? I felt like I was dropped inside a dangerous place, blindfolded and abandoned, armed only with my meter and my insulin pen.

In the hospital the CDE kept talking over and over about low blood sugar. I thought she was kidding. My blood sugar was never below 200. I didn't have to worry about lows. That was never going to happen to...

Oh.

Oh!


WHOA!

My first low felt like someone very large squeezed my head. I sat in the kitchen and followed the rule of 15's. Fifteen grams of carbs and 15 minutes later I felt better. When I was low I knew how to do. But what was I supposed to eat for dinner? And breakfast? And lunch? How was I supposed to deal with diabetes all day every day?

I was afraid and alone. Until I found the DOC, The Diabetes Online Community. I found a network of people who live with diabetes. I found bloggers who write about diabetes. I found people who have had diabetes for more than 20 years. I wasn't alone.  I didn't have to live with this alone.

So I don't.

http://www.mydiabeticheart.com/wp-content/uploads/2012/06/meetup-group1.jpg

Instead I am part of a community of people living with diabetes. Both online and in real life I have the support I need to thrive. And I am thriving! I don't eat kale instead of cookies, and tofu instead of cupcakes. I eat a healthy diet that has room in it for cookies and cupcakes. And caramel lattes, too! I look after myself and surround myself with other people who are doing the same. We all have to life the D-life. We might as well live it together.

I want to say that every day my blood sugar is stable and always looks like this:


But I would be lying.





No. I don't live a perfect life with diabetes. I live my life with diabetes. And my life right now is running circles around how I felt last year. A whole year with diabetes. I made it!  Yahoo! If you have diabetes, you can do it, too.

Monday, July 23, 2012

Goodbye Paula

Paula Morgan died on Sunday. The news hit me like a fist in the chest. Paula's family lived on our block for many years. Paula was six when my family moved here. She was one of the neighborhood little girls who played on the swing sets in our backyards. She ate ice cream from the ice cream truck with my daughter and the other neighborhood kids. I watched Paula grow from a little girl to a young lady before her family moved away.

She struggled as a young adult, as young adults often do. She moved back into her mother's house and brought her young son with her. Early Sunday morning someone set fire to her mother's house. Paula's mother was out of town. Paula and her little boy were inside. Nicholas got out safely. Paula didn't make it. Now her mom is grieving the loss of her only daughter and her home.

This wasn't a tragic accident. Someone murdered Paula Morgan. Someone deliberately destroyed her mother's home. I can't believe this is real. In the middle of my grief is a coiled spring of anger. Police have a suspect in custody. But it doesn't undo the damage.

Paula who ate potato chips during the block party. Who I handed a Coke and a Popsicle. Who I talked to and laughed with. That Paula. Our Paula. Someone killed her on purpose! I don't understand. Why would anyone do that? Even if I knew why it wouldn't make any sense. Making sense of nonsense is hard to do.

Today is Paula's birthday. She would have been 25. I'm remembering her today.

Happy birthday Paula. I'm glad I got to know you when you were little. I close my eyes and I still see you smile.  You taught us to live life, laugh and have fun. Thanks for that. It matters. I'm sorry your light was taken from the world. It's a little darker without you shining here. Goodbye Paula Rae. Rest in peace.



Paula Rae Morgan
 July 23 1987 -- July 22 2012




Wednesday, July 18, 2012

Oh, THAT Basal

When I cook soup I add enough basil to flavor the whole pot just right. But what about my basal? You know that background insulin my pump delivers every three minutes. My pump makes a happy SNICK sound. A little drip of insulin flows into my body and makes everything work just right. However, On Monday I found out the hard way what happens when good cannulas go bad.

Monday was one of those days. I had a problem with my computer power cable and called technical support. After spending an hour chatting with someone from Utah, I got the green light to take my defective power cord to the computer store. They said they would be able to swap it out for a new one. They also said I didn't need an appointment. It should only take a few minutes. That's what technical support said.


Friday, July 13, 2012

4:15 AM with Diabetes

It is 4:15 am. I am not sleeping. Instead I am trying to troubleshoot this problem.


Sleep? What's that. Groan.

Wednesday, July 11, 2012

Super Diabetic Mario Brothers = Super Offensive

I saw a clip from Conan. Take a look at the first 32 seconds.



It was meant to be funny. I get that. To Conan diabetes is a joke.

This morning Conan didn't wake up at three AM, test his blood sugar and find out he was 403. He didn't look at the result, look at his insulin pump and realize he was disconnected for hours and on his way to DKA.

He has never had a low blood sugar and fainted.

He doesn't solve an algebra equasion before every meal. Bolus = (x -- y/z -- a) + n/k

To him a Gusher is a type of fruit snack, not 10 blood soaked paper towels after removing a bad set.

He has never run out of test strips during an electrical storm, or worried about keeping insulin cold after losing power.

Losing a foot is an abstraction, not a reality he might one day have to face.

To Conan diabetes happens to fat people who deserve their fate. It doesn't happen to babies and toddlers. Or young kids. Mothers and fathers don't have diabetes. Only people who don't matter. People on the margins of society. People who deserve to be bullied.

Mr O'Brien, I have diabetes. I didn't deserve it. I live with it. It's hard. I prick my fingers 10 times a day. I worry about how every bite of food will effect my body. I live with a kind of vigilance you will never know. Diabetes kills more people than breast cancer and AIDS combined. If you wouldn't laugh at someone with breast cancer, or AIDS, don't laugh at diabetes. It's not a joke. It hurts a lot. You hurt the millions of brave people who get up and deal with diabetes every day. I didn't deserve to be laughed at. I deserve your support. Diabetes is already hard to live with. Please don't make it harder by laughing at me and taking pleasure in my pain.


Tuesday, July 10, 2012

Freckles Three, Leave Them Be

When I was a Girl Scout I learned to recognize poison ivy with this rhyme: Leaflets three, leave them be.

 This picture of poison ivy provides visual verification for the rhyme, 'Leaflets three, let it be.'
This is poison ivy. Knowing what it looks like is half the battle. Three leaflets growing together on one stalk. Touch it and you'll be sorry.

I learned another rhyme a few days ago, it goes like this Freckles Three, Leave Them Be. I have three freckles in a row on my tummy. The first time I put in an insulin pump set, I put it right next to the row of three freckles. When i went to change my set, I got a gusher. What a mess! Ten paper towels and still bleeding. That was my first ever set change. Needless to say I was pretty nervous the next time. But, nothing happened.

Since that time I've moved my set all over the place without incident. A few days ago, I returned to the spot with the three freckles. I put my set in and instantly knew something was wrong. It's not supposed to hurt like that. The rest of the evening my set got more and more painful. I couldn't sleep that night so I got up and yanked out the set. And got another gusher.

That's when I saw the three warning freckles. Freckles three, leave them be. That's not a good place for an insulin pump set. If I remember my rhyme, hopefully I won't have to deal with another gusher. I'll be glad when the bruise heals. But, at least now I know what to avoid.

Does anyone else have a way to avoid bad sites?

Thursday, July 5, 2012

Of Course We Are Still Friends

Ever since I met KB she has had health problems, but nothing prepared me for the panicked phone call I got from her husband two years ago. KB had a stroke. The next day KB had another stroke. In a few short days she had three more. Five strokes. KB was a few days shy of her 28th birthday. Her daughter was six.

We want to read stories about remarkable recoveries, how modern medicine is able to repair everything that goes wrong. That's not what happened this time. Two years later KB has severely limited hearing. She has only three intelligible words. None of them are her husband's name, or her eight-year-old daughter's name. Yes. No. Uh-huh. That's KB's entire vocabulary. The rest of the sounds she makes are nonsense words. She suffered from repeated seizures the first year after the strokes. Thanks to new medication she has less seizures now. KB can still read, although she doesn't always understand everything. She can write, but often the words come out of order due to aphasia. Five strokes changed her life profoundly.

Today I took her to a doctor's appointment. After getting lost we finally found the professional building. We got out of my air conditioned car and both grunted in dismay over the heat. It was 105 in the shade. I have no idea what the temperature was in the parking lot, but I swear I saw the Devil sipping lemonade and fanning himself. I walked with KB into the hospital and we both let out grunts of joy at the air conditioning.

Sunday, July 1, 2012

Waiting for Monarsen II

This is the medication I take for myasthenia gravis. It's called Mestinon.

 

Mestinon was state of the art medication in 1935. Do you know what else was state of the art medical care in 1935? 




 

It's been 77 years since there was a new medication specifically created to treat myasthenia gravis. FDR was president in 1935. There wasn't a new medication during the Truman administration. Or the Eisenhower, Kennedy, or Johnson presidencies. Nixon, Ford, Carter, Reagan, Bush, Clinton, Bush, Obama. 77 years, 13 Presidents.  Nothing new. How is this possible? Medicine has advanced so far since then.

I have an insulin pump. I have a Dexcom. I could spend hours reading about how the treatment of diabetes has advanced since 1935. I still rely on a 77 year old medication that works and doesn't work, that overdoses and under-doses and has so many side effects the main effect gets lost. Mestinon hurts almost more than it helps. I want something better.

I am waiting for Monarsen. The promise of a new medication that has no side effects, that works on the RNA level of MG antibody cells is almost too much to hope for. It's real. It's not available anywhere in the world. So I wait. I wait in the Twilight Zone where it is always 1935. 

Maybe I need to ask my pharmacist for a bleeding. Here's one with a bowl of leeches in 1935.

 

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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