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.

14238285_10153917052433030_1052663657950197217_n.jpg

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….

IMG_3432.jpg

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.

 

Reality Check

Dear gentleman at the Aquatica Water Park:

At about 1:15 PM today you saw my 11-year-old daughter run up the stairs of the Tassie’s Twister ride with two of her friends and beeline straight to the head of the line. You called her out for cutting the line. I understand why you were upset: line cutting is not cool, and you purchased a quick access wrist band after all. But then my daughter showed you her RAP (Ride Accessibility Program) pass and explained that she has a medical issue that entitles her to go to the head of the line. You were still upset. She did not owe you an explanation – if park staff issued her a pass, this means she qualifies for it, and it gives her no joy to discuss her medical condition with total and unsympathetic strangers. However, she still tried to politely explain that she has Type 1 Diabetes. You proceeded to sarcastically tell her that she was still able to run up the stairs just fine. She tried to defend herself but you were mean. She was upset enough that she chose to turn around and leave.

What you do not know, and did not care to even try to understand, is that diabetes, water parks and long lines in heat do not mix. My daughter can be in a real danger of experiencing low blood sugars. Swimming and playing in water makes her BG plummet more than any other activity. Add heat and waiting, and it’s a ticking time bomb. She does a great job of managing her BG, but things can unravel very quickly and unpredictably sometimes. That’s just the nature of T1D. My daughter normally carries a backpack with all emergency supplies with her, so that if she starts to experience symptoms of low blood sugars she can test and treat. However, this is a water park. She is running around in a wet swim suit. She cannot simply carry her supplies with her. Where could she even leave her backpack before going down the slide/water ride and how could she pick it up afterwards?

IMG_3002

V’s diabetes backpack goes everywhere she goes

My daughter has been living with T1D since age 8. We’ve been to a number of theme parks in the three years since her diagnosis, and even though she is usually eligible for a disability access pass, we have never before asked for one. For starters, we have no tolerance for long lines. But even if she’s stuck in one, she has her supplies on hand, and it is easy to step out and take care of her medical needs when necessary. As I explained earlier, it’s both not so easy and more dangerous in a water park. I did not want to hover over her all the time – she wants to be a normal 11-year-old and run around with her friends. I am sure you remember being 11 and enjoying your budding freedom, and you’d agree that she deserves to experience it too.

So for the first time in three years, I asked for a disability access pass, a pass that gave her front of line privileges on four rides in the water park. This gave her safety. Safety that she should not be stuck in a long line without any of her supplies, feeling sick and not being able to take care of a potential medical emergency.

The disability created by Type 1 Diabetes is invisible. Aside from the cyborg parts and various diabetes paraphernalia, you see nothing. Yes, my daughter can run up the stairs without problems. Yes, she looks fine. And yes, she has a real, serious medical condition that creates a real disability. For the most part, she lives a perfectly normal life. However, there is a lot of diabetes management work that happens in the background that allows for this normal life to happen. And at times she has to deal with real limitations.

Unknown

My daughter did not look right when she came back to me. When I asked what was wrong I fully expected her to tell me she was feeling low. Instead, she proceeded to tell me about you, what you told her, and how you treated her. She was hurt by your words and taken aback by them. So far, we’ve only encountered supportive people. Sometimes they were uninformed, but always kind and willing to listen. You were judgmental and mean. Sadly, there are many people like you out there. I’ve heard all kinds of stories from other people with diabetes, so I knew it was just a matter of time before my daughter got her first dose of harsh reality. People with diabetes are routinely the butt of everyone’s jokes, the recipients of unsolicited advice, the targets of insults and ridicule. This was unavoidable but knowing it did not make it any easier.

I gave my daughter a hug, told her that I was sorry, and told her that unfortunately there are lots of people like you out there – people who judge quickly and are not interested in learning or understanding; people who, despite not knowing anything about diabetes, feel compelled to make hurtful comments about and to people with diabetes. I told her to try to shrug it off and not allow mean people and comments to ever, ever ruin her fun. Then I sent her back to the ride, reminding her that you must have been long gone from there and the coast was clear. My girls is a tough cookie. If having diabetes is not bad enough, she has to develop thick skin and learn how to deal with the deluge of ignorant and hurtful comments. After a few hugs, some venting, a show of support from me and her friends, and a blood sugar check, she went back to having a blast.

In the highly unlikely event you are reading this, let me leave you with a few parting words. You will undo all the wrong you did by learning more about Type 1 Diabetes and educating others about it. Also, please understand that just because you cannot see someone’s disability, it does not mean that it does not exist. And if someone tries to explain it to you, please listen and refrain from judging. If you think someone is cheating and taking advantage of a disability pass system, address your concerns with a staff member. And please be kind. All of us can surely use more kindness in this world.

hug_a_diabetic_tshirts-r7fcf904c017e48edb422dd138facd904_804gy_324

MasterLab 2016: The Lessons

Disclosure: Diabetes Hands Foundation provided me with a scholarship that paid for my flight, hotel, and registration to the MasterLab workshop. All opinions are mine.

I’ve been doing some thinking, some introspection. As I have shared before, I started this blog as an outlet for myself. Soon, I realized that by sharing our story I am also trying to make the world a friendlier place for my daughter and all other people with diabetes. But what lies beyond sharing our story? What diabetes-related issues do I want to focus on? What organizations do I want to support?

IMG_3174

I can advocate everywhere. I cannot advocate for everything.

In his opening remarks at MasterLab, Scott Johnson talked about paying attention to and feeding “your fire.” That message struck a cord. I want to advocate for something I am passionate about, something I truly believe in, something I can throw myself into without any reservations. I need to advocate where my heart is.

My heart is with #DiabetesAccessMatters. Having diabetes is hard enough. We don’t need constant battles to get access to and coverage for needed diabetes supplies. We don’t need insurance companies to play doctors and tell us what treatment is better for us. We don’t need to worry about being able to afford insulin which, for Type 1 diabetes, is literally a life-saving medication.

My heart is with diabetes tech. Sure, a cure would be nice and it will hopefully happen one day. In the meantime, diabetes tech is what continues to make  the biggest difference in easing diabetes burden, improving safety and effectiveness of diabetes management, and improving overall quality of life.

IMG_3177

I got to touch iLet!

My heart is with Riding on Insulin, and not only because they organize amazing adventure sports camps for T1 kids. ROI people are the kind of role models I want V to have in her life. I want her to be around T1’s who can show her via their actions that everything is possible and who will encourage her to follow through on her goals, challenge herself and live her life to the fullest. I am determined to continue my fundraising for ROI until I reach and surpass my goal.

IMG_3055

Proud to be RIO Global Athlete

My heart is with Camp Conrad Chinnock. Diabetes camp is such a special place for T1 kids. It’s a safe place where they can be totally free and where everyone “gets it”. I want to make camp work weekend a family tradition so that every year we can help get camp ready for summer. I may also fundraise for it in the future and participate in other volunteering events/functions. And while I am not officially fundraising for camp now, I have selected it as my charity via Amazon Smile.

IMG_3295

Having a blast at diabetes camp. Image credit: Camp Conrad Chinnock

My heart is with being a patient voice on behalf of my daughter. I want a seat at the table with health care providers, tech developers, policy makers, drug and device manufacturers, and other involved parties. We are all in it together and I want us to have a joint discussion on how to improve care, access and quality of life for all people with diabetes. I’m getting that seat at the table, literally, at the Diabetes Mine Innovation Summit in October. I am so honored to have been selected as one of the Patient Voices winners.

Unknown.jpeg

Not long before I left for MasterLab, I created a new category for my blog: advocacy. Looks like it’s going to get quite a workout. Chaaaaaaaarge!

MasterLab 2016: The People

 

california-1

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.

IMG_3182

 

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

Quiet before a storm

I haven’t posted in a month. I guess after Diabetes Blog Week wrapped up, I needed a little break. Consider it a quiet before a storm because tomorrow I’m getting on a plane and heading to hot and humid Florida for MasterLab! I am beyond honored and excited to have been selected to participate this year. I can’t wait to meet all other advocates and presenters and learn how to take my diabetes advocacy up a notch. There will be many posts in July. The storm is right around the corner.

masterlab

 

 

Global Athlete

Back in January our kids went to ski/snowboarding camp that was put together by Riding on Insulin. Kids and a blast I wrote about our experience in this post. We were really inspired by staff and volunteers of ROI. It was then and there that I decided that I absolutely needed to get involved with RIO somehow. I did so by becoming a Global Athlete so that I can fundraise for ROI to keep the programs going.

ROI has a thriving endurance team. It is comprised of Type 1’s and other Type 3’s (friends and family of Type 1’s). Most of the people train for Ironman races. Now, I am definitely not cut out for Ironman for many reasons, but I can run a little.

IMG_3087

And I am crazy inspired by anyone who does an Ironman. Fortunately, I did not have to sign up for Ironman (or any triathlon, actually) to become part of ROI endurance team. As a Global Athlete, I can stick to running. I’ve made a commitment to run at least three races and raise at least $1500 by the end of this year.

It’s interesting how things work out sometimes. Prior to January camp, I’d been on a racing hiatus. I experienced a major training burnout while preparing for New York Marathon in 2014, and after I completed it I took a break. I kept running but went for over a year without doing a race. My decision to fundraise for ROI kicked me out of my complacency and abruptly ended my hiatus. We came back from ROI camp on Sunday evening; I was enrolled as a Global Athlete and signed up for a race by following Tuesday afternoon. I was one of those things that just felt right.

I decided to stick to half-marathons because I am not yet ready to do another full marathon (though I think I might have one more left in me.) It seemed challenging enough anyway given my hiatus, and that even prior to it I was typically doing only two races per year. My training and fundraising took off.

In March, I completed my first of three – San Diego Half Marathon.

IMG_2844

Yesterday, I completed my second of three – San Diego Rock-N-Roll Half Marathon.

IMG_3055

Actually, our family completed a little triathlon of sorts: all except for my hubby had races yesterday. V had swim meet, her brother had BMX race, and I ran my half. We had to do some crazy juggling to get everyone to their events but we pulled it off.

IMG_3090

My third race is TBD in the fall. I have not made up my mind yet. So many good options out there!

Of course I have to close out with the link to my fundraising page, if you are so inclined to support my fundraising. No amount is too small, every dollar is appreciated, and you know that your donations will go directly toward awesome adventure sports camps for T1D kids. We can’t wait for our next one!