Tag Archives: diabetes

Patient 13: A Possible Cure for Diabetes

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When I was diagnosed with Type 1 Diabetes at age 22 (19 years ago for those who don’t want to do the math), my doctor told me not to worry. Diabetics could live “nearly normal” lives, by which I figured he meant taking quiet walks on the beach and holding down a steady job. I was pretty sure my adventurous lifestyle was out of the question. He also told me that in the next five or ten years there would probably be a cure for diabetes. They were that close.

I believed him. I thought I had nothing to worry about. All the bad “complications” of the disease (isn’t that a nice way of putting it?) wouldn’t have time to set in. I was practically off scott free. No need to worry about blindness or amputating a limb or heart disease. They were ON THE VERGE of a cure. Besides I’m a bit of a perfectionist. Just ask my husband. Give me a goal, and I’ll outreach it. My A1C (the little blood test number used to check how good or bad you’ve been for the trailing 3 months, kind of like Santa’s little list but way more important) has always been in the normal range. My doctor once told me I was a “rockstar patient”. I tried not to let that go to my head.

I am also exceedingly optimistic. I kept repeating my doctor’s earlier mantra–there’s going to a cure for this disease ANY DAY NOW. I was sure of it. Until it dawned on me. No one had gotten any closer to a cure since I was diagnosed. The only news about Diabetes was of the Type 2 kind. T1 and T2 are actually not even the same disease at all. The result–a pancreas that doesn’t produce adequate insulin–is the same. But the cause is entirely different. And since most people have T2 diabetes, very little seemed to be happening on the T1 front.

Or at least that’s what I thought. A “cure” for T1 diabetes would be some way of transplanting the pancreatic cells that create insulin (aka islet cells). Until now, these transplants all lead to rejection. But now, Scott King and Hanuman Medical Foundation have created the Islet Sheet, which is a device that produces these cells but protects them from the patient’s immune system. King, a diabetic himself, will be the 13th patient in his own study, which hopes to implant these protected sheets under the skin of patients and essentially cure them of diabetes.

Needless to say, my fingers are crossed. Patient 13 is a documentary film based on the study, following the patient’s progress. While the study hasn’t yet started on humans, they are moving quickly.

Here’s a look at the trailer for the project. Let’s hope this thing works.

 

What Avalanches Can Tell Me About My Own Weakness

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How I Try to Pretend

Five Foot Crown in Bear Pits, March 2011

Weak layers in the snowpack are like fragile layers in our psyche. We can cover over them with slabs of bravado, carefully sintered together and work-hardened. We can pretend they don’t exist, or that subsequent snow has masked the flaw. As a diabetic and a rescuer, I prefer to bridge over my tendency towards low blood sugar reactions and pretend I’m in control.

Just like in the snowpack, weakness lingers. In fact, given the right conditions, cold temperatures and a shallow snowpack, those frailties grow even weaker. Sometimes ignoring those unsightly parts of myself makes them scarier foes, and yet I can’t resist. Who wants to stare her own ugliness down? When I have a low blood sugar reaction I hate to ask for help. It’s a weakness I try to bury. And yet its a ridiculous strategy.

A Ridiculous Strategy

Anna D. tossing a shot onto the slope, Southback Crystal Mt.

This morning I woke at 4 am. Hot sweat pooled in my clavicle and I threw off the sheets. “I’m having a low blood sugar,” I told John as I careened down the hallway toward the kitchen. I stood there naked and sweating and tried to prick my finger and smear the drop of red blood onto the tiny strip. When my brain is starving, it seems to shut off the less important functions like eyesight. I stared at my glucometer and tried to see the number blinking on the screen. It was either 64 or 34, either way a low blood sugar. I lifted my hair off my shoulders and let the sweat cool my skin.

John handed me a glass of orange juice and told me to drink. It was sweet and delicious. Diabetics can’t normally drink juice; it contains far too much sugar. I miss drinking orange juice. I wondered for a moment if drinking juice made the threat of a seizure worth it. I ran my tongue along the slick above my lip, leaned over the counter and rested my face in my hands. I was very tired and starting to get cold.

John helped me back to bed, where I buried myself in the damp sheets. My blood sugar was returning to normal and I shivered. John kept waking up thinking my shaking was the start of a seizure. I told him not to worry; I’d be fine.

Buried Facets

What used to be a forest now lays on the ground just uphill from my house

Just a few feet from my window, century-old trees lay in a jumbled mess. Last season a huge avalanche slid nearly from the top of the mountain and stopped within feet of our apartment. The aftermath of that slide was humbling. Trees and rocks were uprooted, or snapped in half and sent a mile down the slope, to rest just uphill from where I now lay shivering and clutching the sheets against my weakness.

While pretty on the surface, once buried facetted crystal become a dangerous weak layer

When the slide let loose, having been triggered by explosives thrown from a helicopter, the slab failed on an old weak layer. Months before, a rain event followed by cold temperatures had left faceted crystals that later were buried by late-season snow. When the stress of the new snow overcame the strength of the snowpack, huge slides let loose all over the mountain, running on that layer of beautiful, diamond-like crystals that wouldn’t bond.

I couldn’t control my shivering. The wet sheets provided little warmth, and the clock blinked 4:35 am. Between the tree tops outside the window the sky grew lighter. These very trees acted as the last defense against the tons of snow and debris that had nearly buried the bed I now lay in and the window I looked through. Faceted crystals will not bond to anything, will not ask for help from nearby slabs. Buried surface hoar harbors air pockets that create a growing weakness, nibbling away at its surroundings until a layer of crystalline dominoes is poised and ready to fail. The symmetry was almost too much to bear.

With a Little Help From Our Friends

When I look over the past few years of our lives, so many things had to go right. John lived through an impossible diagnosis. The cancer didn’t spread. He got the transplant. We weren’t in our apartment when the avalanche came down. We didn’t get buried.

During a recent interview a radio personality asked me what I’d learned since writing my book. I answered quickly. I knew this one.

My happy place: skiing powder with my husband

I have learned to be grateful. If we didn’t have buried weakness, gratitude wouldn’t come quite as easily. If John hadn’t nearly died we wouldn’t be living so large right now. If I didn’t have diabetes, I might forget to be humble in the face of risk, both on and off the mountain.

Weakness reminds us of our humanity. If we were perfect we wouldn’t need each other. John’s ordeal sintered our marriage, bonding the very crystals of our being together into a cohesive slab.

I looked at the clock again, it was almost 5 am, time to wake up and check the weather forecast. John and I looked at it together this morning, mapping the timing of the storms lining up in the Pacific, strategizing about how to get the mountain open.

If the forecast pans out, we could be open by early next week. Our lives are about to shift again–this time towards the yearly start to our ski season. I look forward to skiing again, feeling gratitude and joy and weakness.

It’s American Diabetes Month and I Feel Fine

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November is Diabetes Month. I suppose, like with any National Something Month, the goal is to raise awareness and money to fight the Something. October has Breast Cancer Awareness; February owns Heart Health; April is a double-whammy with Irritable Bowel Awareness and Distracted Driving Prevention. For every health concern, there’s a month, and Diabetics have November.

A Life With Diabetes

A moment alone checking levels

I rarely mention that I have Type 1 Diabetes; it doesn’t define me. But it is a regular part of my day. It comes up so often in my memoir that I probably should have given Diabetes her own book. But I’m not sure I wanted to give the disease her own stage. We have a rocky relationship, Diabetes and me. I would much rather write a book about my husband’s illness, giving Diabetes only a bit part in the narrative. And I had thought I succeeded until readers reacted with such horror at my near-death low blood sugar reactions. I guess I didn’t realize it was such a big deal.

So, okay. Fine. Diabetes is challenging. Insulin is a fickle mistress. And yes, far too often I go into diabetic shock, which is, for lack of a better word, a full-blown seizure.

Why is that so hard to admit?

Coming to Terms

Summit of Mt. Baker, WA

For many years after I was diagnosed, I pretended to be invincible and unflappable. I wasn’t going to let this two-bit, penny-ante, no-count, nothing of a so-called disease get the better of me. I would climb mountains, I would kayak big rivers, I would spend weeks in the backcountry. And I didn’t care what Diabetes said; she wasn’t going to stop me.

I remember waking up one night in a remote cabin in British Columbia. Ten of us were sleeping in our bags, batting the mice from our pillows and dreaming of the powder-filled glaciers we’d skied that day. But I wasn’t dreaming exactly. It was more like a drugged reverie. The age-dark beams of the roof bowed up and down. Bats flew around my head, lifting the light fabric of my down bag and threatening to carry me away. I almost tapped into the darkest truths that skiing and remote mountains and a blood sugar-addled brain could reach before I delved into a full-on seizure.

Predictably I started sweating and shaking. I screamed and cried. I closed my eyes and moved my head from side to side. My body reared up a few feet off the ground and slammed down.

My friends knew what to do: feed me glucose tablets and orange juice until I came around. And when I woke up, I laughed. Oops. Sorry guys. Didn’t mean to wake you. But their stares were full of fear. We were remote, at least a day’s ski to a phone. What if they couldn’t wake me? What if a helicopter couldn’t pick me up? The look of responsibility weighed heavily on all of us, and I realized I had to strike a peace accord with my sworn enemy.

Balancing Act

After carrying this disease around with me for over 20 years, I’ve had a few scares. Most often it’s not the disease that kills you, but all the complications. Diabetes is hard on your body. The American Diabetes Association has a sobering statistic:

Diabetes kills more people each year than breast cancer and AIDS combined.

Diabetes affects every organ, every blood vessel, every brain cell. If I eat too many carbohydrates without enough insulin, or have too much stress, or get sick, my blood turns to 30 weight car oil, bursting blood vessels and nerves. If I eat too little, or exercise too much, or give myself too much insulin, I can have a low-blood sugar seizure.

Diabetics can do anything

Diabetes is a balancing act between exercise, food, insulin, stress, illness and other factors. But it is also a window into my health. Since I check my blood sugar levels several times a day, I can watch with a transparency unavailable to non-diabetics how my lifestyle affects my body.

The Upside

I can be healthier seeing the fruits of my exercise and the effects of my transgressions. A Chinese proverb claims, “No disease short life; one disease long life.” Because when you have a disease like Diabetes, you have to pay attention. You have to manage your stress and exercise even when your husband is dying. You can’t drink too much, or eat too much or push yourself too hard. Nor can you take a day off and eat a bag of Fritos while watching television.

Hail National Diabetes Month! This is our month and I’m going to celebrate. And by “celebrate” I mean drinking a diet soda, sucking on a sugar-free candy and climbing a peak. What did you think I meant?

Diabetics Pushing the Edge of Normal

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Sean Busby

Sean Busby, a Type 1 diabetic, has lately been bagging big lines in Iceland, Antarctica and Patagonia. According to an article at Espn, Sean is preparing for a trip to Greenland with a few first descents in his sights.  While most adventurers worry about their water freezing or their boots getting left out in the cold, for Sean if his insulin freezes while he’s on a remote continent, nowhere near a drugstore, he’s toast.

I should know. I’m a diabetic too, and learning to compensate for the disease in an outdoor setting offers a unique set of challenges. Sean uses a OmniPod, which attaches to his skin, keeping the insulin close to his body, away from freezing temperatures. Containing 3 day’s worth of insulin, the pod can maintain his latest doses, but the vial, the one he will use to refill the pod, must also stay out of the elements.

That isn’t easy when you’re climbing in subzero temperatures. For that matter, it’s pretty challenging even on the slopes at Crystal, or any overnight backpacking trip. Extreme temperatures, either hot or cold, will render the insulin useless.

I use an insulin pump (the Medtronic Paradigm). It has many of the advantages of the pod, but I can take it off when I jump in the shower or even go surfing. I’d be afraid the pod would get ripped off in the breaking waves. Furthermore, if I have a low blood sugar, John knows how to disconnect the pump, in the event of an emergency.

When I was first diagnosed with diabetes nearly twenty years ago, my doctor told me not to worry. Innovations in diabetes management were on the horizon. A mechanical pancreas, capable of monitoring blood sugar levels and dispensing insulin accordingly was just around the corner. Twenty years later, they haven’t gotten much closer.

Instead, most diabetes research funding goes into fixing the Type 2 epidemic. 1.9 million people were diagnosed with Type 2 diabetes in 2010. Many of those are due to lifestyle—the wrong diet and lack of exercise. Whereas Type 1, on the other hand, is an auto-immune disease.

Mt. Rainier

When my doctor told me that I could live a “relatively normal life” as a diabetic, my heart sunk. I didn’t want to live a normal life, and any scale diminishing that even by a fraction seemed devastating. A year later, I climbed Mt. Rainier. I recently published an article about that trip—the first post-diagnosis physical test of my body and my medication—in Diabetes Forecast Magazine. I hadn’t yet figured out the ratio for hard physical activity to insulin levels. My doctor had told me to cut my insulin in half on the climb up, assuming that the aerobic exercise would bypass my caloric intake to metabolize my food without the help of the medication. Too much insulin and I ran the risk of a severe low blood sugar reaction. Instead, I went the opposite way and when I reached the summit and checked my blood sugar, it made sense. I’d struggled the last few hours, each footstep a gargantuan effort. When I saw my blood sugar on my glucometer, I understood why. At 365, all the calories I’d been eating were just sitting in my blood stream, causing long term damage, but not getting into my muscles. Without insulin, sugar stays locked in your blood, where it can’t do anything but harm. Too little insulin in the blood stream and your brain could starve. Too much and you risk vascular damage. It’s a balancing act more difficult than the tallest of slacklines.

So, this is why I’m even more impressed with Sean Busby. Props to him. Way to advance the edge of diabetic normal, Sean. If bagging first descents in Greenland is “relatively normal”, then I guess it isn’t so bad.

Check out Sean’s website, Riding on Insulin, where he offers skiing and snowboard camps for diabetics. Go Sean!

Tim Duffy took on the Coast Guard and won

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Tim Duffy is an adventurous guy. He ski patrols in Utah, guides clients in the mountains in Alaska and just bought Pangaea Adventures, a kayaking outfit in Valdez. Like me, Duffy is a type 1 diabetic.

While he and I have quite a bit in common, I had never heard of him until I saw the May issue of Diabetes Forecast Magazine. Here’s the link: http://forecast.diabetes.org/magazine/features/outdoorsman-tim-duffy-pushes-limits?page=0%2C0

Seems that when Duffy sought to buy the kayak company, he also needed to captain a boat for his clients, for which he would need a license. After reviewing his health history, the Coast Guard denied his license.

With the help of a lawyer, Duffy fought the Coast Guard, who ultimately reversed their decision and granted him his Master Inland license.

This guy didn’t give up.

When I was first diagnosed with diabetes. I was 22 years old, and I thought it was a death sentence.  A year later I climbed Mt. Rainier, the tallest volcano in Washington. I realized that while I’d have to make adjustments, my life didn’t have to be diminished. In some ways, having a chronic disease has forced me to expand my horizons, challenging me to try ever more challenging obstacles. Just to say I can.

An ancient Chinese proverb posits “one disease, long life; no disease, short life.” Ever since I was diagnosed, this has been my motto.

Obviously, Tim Duffy got the same memo.