Thursday, November 14, 2013

The Girl Who Was Hungry

A little less than two years ago, my sister came to visit. We are both type 1 diabetics, and there's a sort of sad hilarity in our conversations at dinner.

"I'm out of reservoirs for my pump. You have one I can borrow? I need tubing, too. And maybe an insertion set if you can spare one."

"How many carbs do you think are on that plate? I bet I can calculate the carbs on this table faster than you."

"Yay! Food with lots of fat! Fat slows the absorption of carbs! Fat is a diabetic's best friend!"

"This entire side of my abdomen is now over-saturated. I've run out of places to put the needles that will still absorb; I think I'm going to have to start sticking the needles in my feet."

"Your pump is purple! That is so cool!"

"Your pump is blue! I love it!"

"Did you hear about that celebrity that was diagnosed with diabetes and claimed it was type 1 and that she cured herself by not eating sugar? Bahahahaha!!!!"

Yeah. It's pretty hilarious. Sometimes it's like a code no one else at the table gets.

Two years ago, though, she pulled out a new drug to shoot up before dinner. Something called Symlin that her endocrinologist told her every T1D should take now. I'd never heard of it.

"What's it for?"

"It makes me feel full. I never felt full before. I used to just stop eating because I saw other people stop."

That was the oddest thing I'd ever heard. She never felt full? How could you not feel full?

After she left, her words stuck in my head. In the afternoons, I realized I was always famished. Like eat a horse and the saddle with it kind of hungry. I'd eat lunch, and feel like I'd eaten nothing. The entire day from lunch to dinner was a struggle not to shove everything in the house into my mouth. I'd been that way for so long, I thought that was normal. Wasn't that everyone's afternoon? Isn't that what vending machines in office buildings are for?

But now I was thinking about it. And I realized that when I put dinner on my plate, it had nothing to do with how hungry I was, but how much I thought a reasonable portion should be. I didn't get seconds most of the time because I didn't think I should. But I rarely left the table full. I mostly left the table thinking I could eat an entire new plate of dinner if someone placed it in front of me. Or not. But probably I could if it were there.

And slowly I realized... I was hungry all the time. And I realized that maybe wasn't how everyone else felt all the time.

It's easy to think we are always at the pinnacle of science and medicine. Sure, we don't have a cure for many diseases, but gosh look how far we've come! Look how much we know! I thought we knew everything about T1D except how to cure it. In reality, we are still, every day, learning things.

Just a decade ago, the thought was to cure T1 diabetes with pancreatic transplants. If diabetes is caused by the pancreas breaking down and not working, you just replace it, right? When the transplanted pancreases also stopped working, some smart scientist discovered that the pancreas doesn't just break down... it is attacked by a person's own immune system. The immune system, for some unknown yet reason, sees the organ as a foreign object and attacks it. Put in another one, and it'll attack that, too. The problem isn't even the pancreas... the problem, it turns out, is the immune system.

In light of this sudden awareness that I was hungry all the time, I began researching this new drug my sister was taking, and I found out something mind-blowing. A scant few years ago, scientists discovered that the pancreas, contrary to popular belief, actually makes TWO hormones... insulin, and something called amylin. This second hormone, amylin, is the hormone that helps your body use the insulin it produces better and more effectively. It keeps the liver from dumping excess sugar into the bloodstream and helps keep the glucose from the digestive track from building up in the blood. Beyond that, though, it slows the digestion of your food and sends the signal to the brain that you feel full.

Mind. Blown.

When type ones lose their beta cells, they not only lose the ability to produce insulin, they lose the amylin as well, and over time, like a frog in cold water set to boiling, you forget what it feels like to feel full. Food goes in the mouth and through the stomach like water, barely stopping to fill it up. You brain doesn't get the signal that your stomach is full. And all that glucose from the food (not just sugar foods, but everything from milk to vegetables have glucose in them) rushes straight into the bloodstream, where the insulin cannot possible work fast enough to catch up.

This is all so complicated. Much more complicated than it sounds, because everything is connected.

Type 1s don't make insulin, so they have to take it in the form of shots (or through a pump). That insulin, over time, makes many diabetics gain weight. (This is controversial, unfortunately. Science has shown it to be true, just ask the NIH, but insulin manufacturers and many doctors and websites resist this idea.) The more weight you have, the more insulin your body tends to need. The more insulin you take, the more weight you gain. It is a vicious circle that I've found screamingly, cryingly, depressingly true.

Add into this not being able to feel like you've gotten enough to eat.

Over the past five years, despite a five-day-a-week gym membership for two years, despite walking miles a day for the others, despite kettlebells and zumba and small-portioned meals, my weight kept going up.

And here... suddenly here is the key.

A synthetic hormone called symlin that mimics your natural amylin, that will make me feel full, slow the glucose into the bloodstream so that the insulin I take has time to work, makes the insulin work better and blocks the liver from dumping glucose so that I take less insulin, so that I can finally lose weight, so that my blood sugars are more even and low.

It sounded like a miracle.

Do I hear angels singing?

I began hounding my endocrinologist. My endocrinologist was frustratingly resistant to symlin. He didn't think it was effective. He didn't think it worked. He thought it was far too expensive. He told me if I wanted to lose weight, I should walk more. He told me my blood sugar averages were fine, even though they'd gone up above the acceptable range. He disregarded my research. He wouldn't listen to my reasons. He shooed me out the door.

This went on for a year. Finally, last May, I parked myself in the chair and said, "I want Symlin. It is my money, and my body. I want the chance to have what your body makes naturally. I think I should have the chance to at least try it, and see if it works. And I'm not leaving until I get it."

So I got a prescription. And a healthy dose of skepticism.

Three months later I went back. I'd cut my insulin use by a whopping 30%. My blood glucose averages (taken by a test called an HbA1C), which had peaked at 7.5 - a whole point above what is considered decent control - were down to a near-non-diabetic 5.5. I'd dropped 17 pounds. My doctor was speechless.

I feel fantastic for the first time in years. I have energy. I am not falling asleep at 2pm every day in the middle of work or struggling to stay awake while driving. I hardly ever have to correct a high blood sugar reading.

I am not hungry. I didn't even remember what not hungry felt like.

I feel like... like me.

Today is World Diabetes Day. It is Type 1 Diabetes Day. We, as type 1s, are suppose to help others know what it is like living with diabetes.

Yes, it is shots. Yes, it is counting carbohydrates and being careful of what we eat. Yes, it is the danger of heart disease and kidney failure and amputations and blindness, but less and less of that as knowledge increases and medicine catches up. Yes, it is pricking my fingers ten times a day to check my blood sugar. It is all of this.

It can be feeling hungry. All the time. Not because we have no self-control. Not because we crave the foods we shouldn't have. It is because we don't have the hormone you have that tells us we are full. It's because we don't have the hormone that let's our stomachs fill up as we are eating.

I may not be a celebrity who is able to somehow, miraculously, reverse the damage done to the pancreas and make myself not diabetic anymore. But a little science on my side goes a long way to making me feel like I am.

Friday, November 1, 2013

Why NaNo's Not for Me

This is that time of year people lose their sanity and sign up for the monster novel writing rush of the year. Kudos to you! The idea that one could, during holiday season nonetheless, write something like 2,000 words a day - every day, unless you want to heap the extra unwritten words on the next day - frankly astounds me. you, you crazy writers you, you amaze me.

But it will not be me.

Not last year, or the one before that, or the one before that. Not this year, and not any future year, unless I am invaded by the soul of Stephen King or Danielle Steele or some equally prolific writer.

Before anyone else asks me whether or not I'm up for this, here are my reasons why I won't be NaNoing.

1. I write consistently on a normal basis. I think NaNo is a great motivation for people who don't write all the time - who need some external push, something to strive for and a community to write in. It gives a reason to sit the butt in the chair every single day. We all need challenges sometimes. That's why I recently did one with a few of my writing group friends. I need the challenge that comes with accountability to push forward when I am letting my fears keep me from going forward. But mostly, I am a writer. All the time.

2. I write slowly. Honestly, every other reason somewhat hinges on this. Some people are fast writers. Some people can be fast writers for a short time, if they need to be. I can never write fast. Never. If I manage 2,000 words in a day (I think I've done that three or four times in my entire career), it is because I had hours and hours to write. And I pretty much knew what I was going to write. But on average, 1,000 words is a really great day for me. And I've discovered that those days add up if there are enough of them strung together.

3. Stress is not something I need more of. My life is already more stressed than I want it to be. I am going in more directions than I'd like. I like being busy, and I like having purpose, but I don't like when that starts interfering with being the best me and mom I can be. Having an artificial deadline hanging over my head is something my blood pressure doesn't need, especially when the daily goals are already beyond my abilities.

4. I have a job now. I know, I know - probably the majority of people doing NaNo have a job. On top of parenting, I mean. I have been spoiled for the last fifteen years. Raising my kids has been my number one job, and that takes up most of my waking hours. Writing is something I consider a job, but not one I have to answer to anyone about other than me. Now I am adding 20-30 hours of work, and I think I am not as talented as the rest of you who have figured out how to juggle parenting, writing, and a job. I bow to your awesomeness. I don't know how you do it.

5. It is November. Hello? Short month, six weekdays off for my kids and husband, still high school football/marching band season, holiday in which we are hosting not only extended family but also half the British embassy. I'm not sure I'm going to make it even without the NaNo.

6. I would be setting myself up to fail. I am a slow writer, I am busy and stressed. I am a pathetically slow writer. All this is established. The thing is, I can look at this kind of challenge and know that I am defeated before I begin. If I missed one or two days, making those up would become utterly unmakeupable. And there is no way I could not miss one or two days.

7. I am on the eighth or ninth draft of this novel. I do not need a ton of rough pages. I need some really, really good ones. Ones that will be the last I write on this novel outside of very minor edits.

This is not to say I don't enjoy a good challenge. On Sept. 15, Brit challenged me to write 100 pages in 45 days, and I wrapped that up yesterday with 107 new pages for my now well-under-way novel.  It was about half what NaNo would be, with 15 more days to write. But I did it - every day at least a little. And 45 days later, I have some pages I am really proud of.

So I won't be NaNoing this month, but I know what it takes to do that, and I am impressed by those taking that challenge. I can't wait to see what you come up with, how this month challenges and changes you. I hope you get a novel out of it. Or the start of something good anyway. Check in every now and then, when your eyes are blurry and your fingers sore, and let me know how you are doing. :)