The end of posting blitz…

…for now.

Today is last day of Diabetes Awareness Month. Wish I could say it’s the last day of diabetes. I hope you’ve become more aware. Unless of course you are living with diabetes, in which case you will remain as aware as ever. And if you were getting tired of diabetes posts every day, guess what? We are pretty tired of having to deal with it every day and we get to keep going after November is over.

I am pleased that I met my goal of posting every single day, even though there were a few close calls. Getting the app helped a lot. Hopefully this means that I will be posting here on more regular basis. There are still a couple of posts simmering in my head, needing to be written.

Thank you for reading, commenting, following this blog, and helping us spread awareness!

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Happy to recycle

Last night as I was organizing some drawers, I stumbled across a few folders from the hospital. In them was a bunch of info and documents from the hospitalization when V got diagnosed with T1D and from her first Endo follow up visit. I have to give it to the hospital: they pulled out all the stops and gave us a ton of info and resources. There were even flyers for medical bracelets. And there was a folder from JDRF with a welcome letter that started out with “You are not alone.” They did it everything to set us ip for success. And it was with some amusement that I looked at the records of our follow up appointment. Initial A1C: 12.3. Uncontrolled diabetes. Possible Celiac (wish that didn’t change to “definite Celiac” a couple of months later.) And at the bottom of the page, there was our first sliding scale.

Yep, like many others, we started with the sliding scale, where we had three types of insulin, mixed two of them once a day into one shot, and had to stick to a fairly rigid meal schedule both time and carbs-wise. It was ok for the first couple of months and in some ways it was actually helpful because if gave us some structure and some concrete rules to follow. It also allowed us to not need an injection at lunchtime in school, which made things simpler. But as we gained more experience in diabetes management, it started to feel more and more forced. We felt like we were feeding to V’s insulin schedule instead of giving insulin to meet V’s needs.

We ditched the sliding scale a few months after diagnosis and never looked back. And last night, after looking over those papers from 2013, I was happy to recycle them. We’ve come a long way since V’s initial diagnosis and we keep moving forward.

It takes a village

Today, ok World Diabetes Day, I thought it would be fitting to talk about how many people help us make it work. I often hear stories of other PWDs and parents of T1 kids feeling alone. I am beyond grateful that from the moment V got diagnosed, we never felt alone or isolated.

When V was diagnosed and hospitalized, our friends and her friends came to visit and cheer her up.

Practicing doing shots at the hospital

Before she was even discharged, our amazing school nurse called us and helped us formulate a game plan. She was our strongest advocate and supporter as we learned to navigate how to manage T1D in school.

V’s teachers showed nothing but care and support and tried their best to accommodate her needs.

V’s friends are her cheerleaders and advocates. She is loved and accepted for who she is, with all of her dietary needs, medical supplies and robotic parts. They don’t flinch when she has to poke her fingers or do a shot. And their parents are also very supportive and accommodating. Many of them even welcome her for overnights, which includes helping her manage things at times, even at night.

Soon after V’s discharge I got a phone call from JDRF parent volunteer who checked in with me and connected us to a local network of T1D families. This gave us an opportunity to connect to others in real life and online. The group had been a tremendous source of support for our entire family. And V got to meet many other kids with T1D.

V and her diabestie!

Then we discovered DOC – Diabetes Online Community – where we learned so much more and met amazing people.

V’s endocrinologist rocks. Every single visit she takes time to address our questions and concerns without judgment and with lots of care and consideration.

We are so fortunate to have two local diabetes camps. V had been attending one or both every year since diagnosis.

Fun at diabetes camp!

Our family and friends have stood by us from day one. They may not understand all the intricacies of T1D management but they sincerely try. Many of them go out of their way to make sure V is always included and her needs are taken into consideration.

Love my tribe!

V’s swim coaches take great care of her. They remind her to test during practice, are calm and supportive is she has a bad hypo (like a 29!), and otherwise treat her no differently than any other teammate.

Living with T1D can be a lonely experience. We are so grateful for our village. Our hope is that as V is gets older she will continue to surround herself with supportive people. No one should go it alone.

Sometimes they get it right!

As I was driving to work today, I was thinking of what to post about, feeling a bit intimidated about making 30 posts in a row. Then I thought it was silly. Diabetes makes itself known and present every single day of our lives. Surely an opportunity would present itself.

Indeed it did as soon as I opened my work email. In my inbox sat a monthly health and wellness newsletter. I don’t pay much attention to these newsletters, to be honest. I scrolled quickly and was about to hit delete. Then the headline of “diabetes month” caught my eye. So I decided to see what the article had to say. I braces myself for the worst. To my amazement, it launched into an explanation of T1 vs T2. And it described things scientifically but simply. And it talked about genetic predisposition for T2. And the tone was free of stigma and shame. And the links were pertinent, credible (ADA), and helpful.

We see so much misinformation out there and it was refreshing to see someone doing it right. Surely, I would rather them not open up with description of complications. And I’d prefer they mentioned insulin therapy and medication as important components of T2 treatment. But overall this was so much better than what I usually see, when T1 and T2 get lumped in together and there is an implication that diabetes can be cured with diet and exercise. I decided it was important to email my positive feedback:

ROI = Awesome

Riding on Insulin unveiled their snowboard/ski camp schedule for 2016/2017 and it broke my heart a little. There is no longer a camp within an easy driving distance from us. The closest camp is a monster of an 8-plus hour drive, and that’s in ideal conditions. I don’t know what we will do. On one hand, of course we really want to go. On the other hand, we can’t justify two days of solid driving for one day of camp. And travel expenses plus lodging won’t be cheap either. But we really want to go! But we most likely won’t.

I was discussing this dilemma with my running friend during a recent long run. Oh yes, by the way, I signed up for my third half marathon. I’ll be running Revel Canyon City half on November 12th! So I am minding my miles and getting ready for it. And there is no better opportunity to talk through my dilemmas than on a long run with a good friend. I don’t always find solutions but more often than not I find clarity.

So as I was weighing the pros and cons of going, I had an epiphany of sorts. Why do I want V to go to ROI camp so badly? Surely we can find cheaper skiing lessons nearby. She’s good at managing diabetes and we can stay close by if she needs support. We can do it in a way that is fun and safe. But ROI is so much more than snowboarding/skiing lessons in a safe environment. To me it is all about the people. ROI volunteers are the people I want V to look up to. Not just because many of them are amazing athletes with Type 1 Diabetes. What I love most about ROI peeps is their passion for life, their determination and ability to live life to the fullest, their perseverance in the face of challenges, their desire to push themselves, and their infectious enthusiasm. That is a lot to love and that is the primary passion driving my own ROI fundraising.

Yesterday, 40 ROI volunteers competed in Ironman Wisconsin. 20 of them have Type 1 Diabetes; rest are family and friends. They raced their hearts out and I am so proud of them! They also fundraised their hearts out to grow the program and make camps more affordable and numerous.

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Thank you ROI volunteers for everything you do. Even though we may not be able to make it to camp this season, you are still giving all of us an example of how to live with T1D.

It is with renewed commitment that I carry on with my training and fundraising as a ROI Global Athlete. Please support my efforts by making a donation to RIO.

In Diabetes Hacks We Trust

This was supposed to be another uneventful dinner at our local eatery, just me and my girl. As we sat down, V told me she felt low. Two things are noteworthy: 1) she’s just getting over a cold and her numbers have been crazy high past couple of days, but trending much better today, which actually made her BG more unpredictable, and 2) her Dexcom has been acting out and showing ??? or out of range most of the day.

She tested and her BG was 56. OK, no biggie, we are at a restaurant anyway. She asked for regular soda but I told her no, she would only be able to have a few sips anyway. We settled on one glucose tab to bring BG up just enough to be able to bolus for dinner, and she ordered a diet soda. Miraculously, at the same time Dexcom came back to life and started alarming us of the low. Yeah, thanks buddy, tell me something I don’t know, I told it. But I should not have been so short with it because of what happened next.

V guzzled down her soda, we ordered the food and she re-tested. 96 – BINGO. She pre-bolused for the food and got a soda refill while we waited for food to come out. About ten minutes later I noticed that Dexcom was showing BG of 110 and going up. How could BG have gone up that much already and still going up? One glucose tab was not enough to do this. If anything, since she gave herself some insulin but had not consumed any carbs, I’d expect her to be trending down. And then a suspicion hit me: did they refill her glass with REGULAR soda? Soda full of sugar? Because it would explain everything.

V drank just a bit of her refill, thankfully. She asked me to taste it. I can’t tell a difference between regular and diet! But then in a flash I remember reading about a diabetes hack that involved testing sugar in soda with a glucose meter. Instead of blood you put a drop of soda on the test strip. Regular soda will yield a high number. Diet soda will yield a LO reading or a meter error.

I whipped out V’s meter, fired it up and put the strip in a drop of soda. Aaaaaannnnd….Drumroll….

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OMG. She was drinking regular soda indeed. If we did not notice an upward trend and test the soda, this would have been V’s BG in an hour or so, and it would have been a monster to deal with.

I gave her a generous dose of extra insulin and we asked for a different glass of diet soda, complete with a clean straw. You bet I tested it when it came out. Meter error message confirmed it was diet. Whew. We carried on with dinner, keeping an eye on BG trends all the while. Afterwards we went for a nice long walk with the dogs. BG maxed out at 250. We can live with that!

Whoever came up with this hack, I can’t thank you enough.

 

MasterLab 2016: The People

 

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I am traveling home after a full day of MasterLab in Orlando – a diabetes advocacy workshop put together by Diabetes Hands Foundation. I spent a day flying across country to spend 8 hours in workshop and then turn around and travel another day to come back, and it was worth it. I will write a little later about what I learned. Today it’s all about people.

I love my d-peeps of all types. None of us asked to join this elite crappy club but somehow we beat some serious odds and got in. Turns out it’s a club filled with incredible and awesome people. Maybe it’s the diabetes that makes them awesome? Or maybe you have to be awesome in the first place to get into the club?

Diabetes creates an instant bond and a feeling of trust between people. By the virtue of being in this elite club we have a lot in common, we speak the same language, we share similar stories. I knew some of the people from DOC (Diabetes Online Community); others were perfect strangers. I finally got to meet them in person and it was fabulous.

I loved talking to adult T1s and learning about their journey with diabetes. A few of them shared how, at the time of their diagnoses in the 70s, they were told that they would not live past 40 years old. Let that sink in. Imagine what it’s like to hear it from the doctors when you are a child, a teen or a young adult. Imagine what it’s like as a parent to have a doctor tell you that your child has 20-30 years to live, tops. And that they would die slowly from awful and painful diabetes complications.

Fortunately, treatment of Type 1 Diabetes has come a really long way. These people who were not supposed to live past 40 are living healthy, productive, active lives. And when V was diagnosed three years ago, the only message that we received was that it was going to be OK, that diabetes was manageable and that V would be able to live a normal, healthy, happy life. We never considered any other alternatives. I am so grateful for that.

It was also interesting to learn that most, if not all, PWD (persons with diabetes) I spoke with don’t care about the cure but are very excited about new treatments and technologies. There is a shared acceptance that the cure is far, far away but better treatments and technologies are here and they are making diabetes management easier, safer and more effective.

I am thankful for the opportunity to hang out with d-peeps. There is nothing like sitting down over a few drinks and having an honest talk about life with diabetes. I got to hear a few diabetes war stories too – some shocking, some funny, some a little scary. One person was concerned that she was scaring me off with all the information she and others were sharing. On the contrary! Being surrounded by people sharing their real-life experiences gives me hope for V’s future. We cannot protect V from the reality of life with diabetes, but by understanding it better we can give her the tools to do well. There I sat, surrounded by vibrant, resilient people, who surely had their ups and downs and made many mistakes along the way. Their diabetes management was not perfect and perhaps at times it was downright awful, but they found ways to live well and thrive. That’s good enough for me. No, it’s better than good, it’s inspirational.

Thank you for allowing me to into your lives and giving me a glimpse of my daughter’s future. Her future is bright.

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Disclosure: I applied for and received a scholarship from Diabetes Hands Foundation that covered my flight, hotel, transportation and registration. All opinions are mine.