Moments of Wonderful

…rather than a lifetime of nothing special. A diabetes blog.

Moments of Wonderful - …rather than a lifetime of nothing special. A diabetes blog.

In my shoes

Or more precisely, on my shoes.

First, it looks like I haven’t officially mentioned it yet here on my blog, but about a month ago I accepted a job working for JDRF. I suppose that would explain why I have written two posts in the same amount of time. Not only am I busy trying to finish off the fundraising for my personal walk team, but I am trying to make sure that the entire walk is successful as well. I LOVE my job but it is awesomely exhausting!

walk sneakersObviously this means that I can’t exactly WALK the walk route this Saturday. I still wanted to do something to acknowledge the people who have helped me along the way.

That’s why I found the perfect pair of high tops sneakers and a white fabric pen and will be taking everyone with me as I meet all of our teams, cheer on the walkers, and thank everyone for all the work that they are doing to to make a difference for those living with type 1 diabetes (and I guarantee more steps than I would have on the actual walk route!).

A gluten free update

I was tested for celiac during the Friends for Life conference in 2013, but even before I received the results I decided to try living gluten free. In my mind, it was worth an attempt because I had a history of allergy and gut related issues tracing back to early childhood – long before diabetes – that had never been fully treated or resolved. I discovered that by removing the gluten trigger from my diet (more on that here and by Kerri here), most of my symptoms and complaints resolved. It hasn’t been hard to stay gluten free knowing how much better it makes me feel.

When I got the first round of results back from the Friends for Life screening – the negative celiac result – it stated that the genetic testing was still pending. After a few more months of waiting, I didn’t think much about how I had not received my results because I didn’t see how it would change my grocery list.

celiac screening

I was quite surprised when I got an envelope in the mail from Massachusetts General Hospital and Dr. Fasano a few days ago. The celiac result is consistent with the original result received shortly after the conference (with my history of lab errors), and now the genetic testing adds another dimension to the picture.

celiac HLA compatible gene

I tested positive (compatible) for the HLA-DQ2/DQ8 genes. This does not mean that I will develop celiac, but had I tested non-compatible it would almost certainly mean that I would not develop celiac disease. Researchers have found that 96% who have celiac confirmed by a biopsy have the DQ2 gene, DQ8 gene or some combination of the two (source). In addition, they believe that having the genes makes a person 10 – 14 times more likely to develop celiac (source).

And so I will continue to eat gluten free, feel better, and deal with the people who think I’m doing it just to follow the latest fad.

That was a first

… and hopefully a last!

I’ve been pumping for over 10 years now and for the first time I left my house this weekend without my pump on.

I was headed out to run errands a few hours after breakfast. I had just finished getting ready for the day, which explains why I had my pump off in the first place. I had packed a snack in my purse (like you do) and was watching my BG on my wrist with my CGM in the Cloud.

My blood sugar was hovering around the 90s and low 100s so I had no idea anything was wrong until about three hours after I left the house when trying to bolus for my snack. I did the quick waistband check and almost couldn’t believe I didn’t have my pump on. In fact, it wasn’t until I checked the actual infusion site and saw that nothing was attached that I actually convinced myself.

the missing basal rise

The much anticipated BG rise as I got back in my car to head home and grab my pancreas.

I got home and got back connected as soon as I could. I was in the mid 200s at that point which I thought was pretty remarkable. I bolused a correction dose and got a big glass of water. It makes sense that when I checked I had a small amount of ketones because I had been without insulin for several hours. It took a few more corrections over several hours, a few more glasses of water, and a small snack to get everything back on track.

I thought about why my BG didn’t rise quicker or tip me off sooner to the problem and I came up with one main reason that saved the situation from being any worse than it was. My breakfast bolus from that morning included a BG correction dose. That meant that I had insulin on board that covered more than just the food I had eaten. Basal insulin doesn’t really have an effect until about three hours later so it makes sense that the most dramatic effect didn’t start until that time. My silly mistake finally caught up with me.

Since it took over a decade for me to make this mistake, I hope it takes another decade before I make it again.

Good Things

Bigfoot style (because it’s impossible to mention too much good in the world)

1. At the end of a tough drive down the mountains from Nevada to Southern California was a close friend from college (the one who saved my life) and her adorable baby who was up past her bedtime so I could see her. I was more than happy to hammer the “BLUE!” column through the table over and over and draw a “rouwer” (flower? tower?) as many times as she wanted.

2 and 3. My mom who did her research before my arrival and found a local bakery with a gluten free line. Did I mention the shop is a three-time Cupcake Wars winner? (among all the other awesome mom-related activities)

4. Getting to share a meal with an awesome friend (and his family) in the same place we met for the first time in 2007.

5. Trying out a new diabetes accessory. I am always on the search for a new way to carry all my supplies when I travel. I spotted this one and drooled over it at the Friends for Life conference and had my first chance to try it out this weekend. Actual review to follow once I finish typing it.

good things

Proud

This weekend was a big amazing time for diabetes advocacy and I am proud to call these people my friends.

with Kim.

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First, Kim gave an amazing speech on the main stage at the Medicine X conference. MedX is an “initiative explores how emerging technologies will advance the practice of medicine, improve health, and empower patients to be active participants in their own care” (source). From my attendance last year, I know that the room was filled with health care practitioners, fellow patients, entrepreneurs, and all other involved in the healthcare experience. Kim’s message about the power of “me too” is something that touches everyone and it evident as I watched the tweets fly by.

with victoria.

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Meanwhile, just about a four hour drive northeast of the Stanford stage, Victoria and Jeff were busy riding 72 miles around Lake Tahoe in one of the JDRF Ride to Cure Diabetes. 72 miles! And between the two of them they raised over $11,000 to fund research towards better treatments and a cure for type 1 diabetes.

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I am very proud to count these wonderful diabetes advocates among my friends. Even if I don’t have matching dress pictures with all of them.

On cloud 128

cgm in the cloud updateI’ve been using the CGM in the Cloud system (Nightscout) for about six weeks now. I’ve gotten into a routine and it almost seems like second nature to have access to the data now.

The biggest problem to keep track of is the various devices that need charging.

The Dexcom actually doesn’t need to be charged if you have it plugged in to the phone most of the day because it draws power from there. The Pebble watch needs to be charged about once a week. This actually depends on how much I’ve been in range because the vibrating alarms drain the battery. I can get about sixteen hours on the uploader phone connected to the Dexcom.

I don’t want to lose remote access to my data in the middle of the work day or in the middle of the night, and that is where my routine seems to do the trick. I charge the uploader phone to a full charge a few hours before bedtime. Then in the morning while I am getting ready, I plug the phone back in to top off the battery. That way it lasts me until the pre-bedtime charge that night.

I’d love to have 24/7 access to the data I can get from the system, but think 21/7 information is pretty amazing too.

#wearenotwaiting

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