Living Well With Diabetes

A colleague of Pat’s owns a sailboat on the Great Salt Lake. He’s offered to take us out sailing this weekend.

That means I’ve been thinking a lot about two things this week: the weather and staying dry.

Weather-wise, Saturday’s forecast for the Salt Lake City area says it’s going to be partly sunny with a high of 54 degrees. Sounds dry. Sounds like a great day to be outside, right? Well, the weather forecast has changed dramatically each day I’ve checked it since last Friday, so who knows what it’s really going to be like on Saturday. It’s completely out of my control so there’s really little sense in worrying about it. The weather is what it is. End of story.

Staying dry, on the other hand, is something I can worry about and have some control over. I’m not talking about keeping myself dry either. I’m talking about the “stuff” I haul around with me all the time. At various times I’ve jokingly referred to this “stuff” as my “peripherals,” my “vital external organs,” my “diabetes IV”, my “artificial pancreas wannabes”, but whatever the name, it’s the equipment I carry with me for caring for diabetes and, well, to be perfectly honest, to keep me alive. It’s equipment like my blood glucose monitor, continuous glucose monitor, and insulin pump. When the manufacturer of this stuff says it needs to stay dry, I pay attention.

My plan to keep this stuff dry is to package it all individually in dry bags like this one:

Since they’re clear, I should be able to operate the electronics (mostly) without opening the bag and risking exposure to water. These units also have the advantage of coming with a lanyard so I can secure the bag to me, or if that’s not convenient, to the boat. That will reduce the likelihood of the other kind of “oops” that would turn a pleasant day of sailing into an expensive disaster, if not a crisis. That is, in a moment of pure clumsiness, dropping one of these devices into the lake.

We’ll see how well this works. More on the subject of sailing and staying dry next week. I promise there will be photos too.

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The online social networking scene has hit the diabetes world. Not that this is particularly new. Diabetes-related online social networks have been around a few years now and places like facebook, myspace, LinkedIn, and Flickr have been around even longer.

According to Manny Hernandez, founder of TuDiabetes, there are at least two dozen diabetes-related social networks (as of May 2009). I wouldn’t be surprised if there are even more now. Because I found eight in about 15 minutes of searching online. Below are the ones I found and I’ve also included a brief description taken from their site:

I’m thinking about joining one of these. No, actually, I want to join one, but I’m hesitating because, well, I’d rather be outside doing stuff, whether it’s bicycling or hiking or whatever, than sitting at a computer. With a job as a software engineer and a couple of personal blogs to maintain already, I’m hesitant to commit to spending more time online. Besides, anybody who knows me from facebook (another social networking site) knows that I don’t play the facebook game very well. Months go by between my logins. I’ve had my facebook account for a few years now and I still haven’t filled in anymore than the required elements in my profile. I’d rather spend my online time updating my blogs, I guess.

But, I’m still thinking of joining one, but only because they are specifically oriented towards people with diabetes. Manny Hernandez gave ten good reasons to join a diabetes social network. They’re ten very good reasons.

So, the next question is: Which one? Any suggestions?

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I read in the Wall Street Journal this morning about Kris Freeman’s experience last Saturday in the 30-kilometer cross country ski race at the 2010 Winter Olympics.

Kris was trailing the race leader by just six seconds. He was in a very good position be the first American since 1976 (five years before Kris was born, I might add) to medal in an Olympic cross-country skiing event. This achievement is made all the more impressive when you know that Kris has to manage type 1 diabetes right alongside his rigorous training schedule.

As the Wall Street Journal story describes it, Kris was suddenly down in the snow calling for help. His blood sugar had gotten low. He needed some sugar and he needed it fast.

In a bike race or just out for a ride, I have felt those symptoms of low blood sugar — the shakes, the cold sweat, the confusion, the weakness — and it’s not a good feeling so boy, I can relate to what Kris was going through. Of course, I’ve never had as much on the line as he had in this race.

No, wait, that’s not true. I’ve had just as much on the line as Kris did. Hypoglycemia is a dangerous condition that, if not treated, can very quickly leave a person incapacitated or unconscious or in a coma or even worse. So, Kris and I and all other athletes out there with type 1 diabetes — and there are a lot of us — put our lives at risk every time we go out to exercise, no matter what the activity is. It’s only through careful monitoring of our condition and knowing very well how our bodies react to exercise that we know that we have minimized that risk.

If a person objects to that risk, well, the alternative is to do what the doctors used to tell newly diagnosed diabetic patients back in the 1970’s when I was first diagnosed: take it easy, don’t try to do too much, don’t think about strenuous activities because the risk of severe swings in blood sugars was too great. Well, you know what I say to that? To hell with that, is what I say.

There are endless ways that people can receive a wake up call that life is way too short and must therefore be lived to its fullest. Diabetes, for me, was that wake up call. It took probably 15 years for that wake up call to register inside my thick skull and sometimes I wonder if it still hasn’t fully registered, but I think the diagnosis of diabetes is probably one of the more gentle wake up calls to receive. I mean, think about it. The other classic “hey, stupid, life is short. Enjoy the gift while you can” wake up calls are things like cancer, a serious car accident, the death of a close friend or family member, etc, etc. I could go on, but you get the point. Getting diabetes is really pretty tame compared to those things.

So, I will continue cycling for the rest of my life. With any luck, on the day I die, I will finish my daily bike ride, dismount, and fall over dead. And until that day, I will do any and all other things that look like fun to me whether it’s bicycling to all 50 states (only Hawaii is left), learning to sail, reading all of the Modern Library’s 100 Best Novels of the Twentieth Century, climbing Mt. Kilimanjaro, visiting New Zealand, bungee jumping from the Royal Gorge Bridge in Colorado, or simply taking a long nap on a rainy summer Saturday afternoon.

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I was scanning through my previous posts and realized I hadn’t mentioned some very big news from 2009: my insurance plan now covers continuous glucose monitors and supplies!

I think I forgot to mention this because I’ve been using a CGM since 2006, but not very much back then because of the cost. I used it as much as I could afford though because I could see the value of the device in my HbA1C test results. In 2006 and 2007, I had to pay for 100% of the supplies because my insurance company didn’t cover them. At that time, they barely knew what a CGM was, I think. In 2008, they covered a ridiculously small portion of the cost. How ridiculous? If I had bought sensors as often as they would allow (every month), by the end of the year, I would be about 10 dollars short of satisfying the annual deductible which I recall was 250 dollars. Part of that was because the CGM manufacturer was considered “out-of-network” and therefore was covered at a lower amount.

In 2009 I saw an end to that though. I remember placing an order for supplies in early January of 2009 and having two things be different. First, they were allowing me to place an order for a two-month supply rather than the one-month supply they allowed in the past. That alone meant I would be paying half as much in shipping. The second thing that was different was amount they were charging to my credit card. In the past, it had been about 250 dollars and now they only needed a 10% co-pay (about 30 dollars). Very nice!

As happy as the end of this story has been for me, people all across the country continue to struggle with their insurance companies to get coverage for what is, I think, the best thing to happen in diabetes care in the twenty-first century. This is despite numerous studies (for example, here and here) showing their effectiveness in helping to manage blood sugar levels.

If you’re still fighting for coverage, check this site out:

CGM Anti-Denial Campaign Website – All you need to fight for CGM coverage.

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This is the tag line of Zip The Cure, an online fund-raising campaign of Pittsburgh teenager Monica Oxenreiter. The idea is to raise $100 in donations to the Juvenile Diabetes Research Foundation (JDRF) from each and every one of the 42,000 zip codes in the United States. One hundred dollars doesn’t sound like much from an area as large as a zip code, but as the saying goes “a hundred dollars here and a hundred dollars there, and pretty soon we’re talking about real money.” When all of the zip codes are represented by $100, $4.2 million will have been donated to the JDRF. That’s a lot of money for a great cause!

The campaign started in November 2009 and so far they have 147 zip codes sponsored. Well, actually, 148 now since I made a donation this morning. Check out their web site at www.ZipTheCure.com. They have a map of the United States so you can see what zip codes are already sponsored.

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