My T3 Hero

Who is your hero?  I've celebrated  my community previously in other blogs, but today I am taking time out to celebrate an unsung hero in my life, my husband, my partner in sickness and health.  My favorite definition of partner is either of two people who dance together.  I often joke that I married my husband because he dances. (which is only partially true)   I realized early in life that dancing is an integral component to celebrating life.You don't have to actually dance with me, but you do have to dance.  It is even now more important as he gets ready to dance with my daughter in her recital and as we continue the rest of our life together in this dance with diabetes.

I am not aware of many men who will get up at 5:30 every morning to make their wife breakfast and lunch.He does. I have all these food rules now which he adheres to including a fresh chop, no soggy bread, and no microwaved anything. Miraculously, my hero manages to get me out the door with breakfast and lunch by 6:15 every day for the last two years.  His commitment has made my morning sugars level out.   This matters.  One of many reasons he is my hero.  Now if we could work in a little more dancing, life would just be perfect.

Saturday Snapshots

Our dblog challenge today is to tell it in pictures, what does diabetes look like. All of these pictures were taken while I was under the influence of insulin.  Just press play.  

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What You Need to Know

I can never escape my reality. NEVER!  That's what people should know. I can't drink it away, eat it away, or run it away.  I never get a personal day, a vacay.  No one with a chronic condition can afford it.  Wearing a pump is awesome because I have some levels of freedom. But I also have the ability to monitor myself every five minutes and can see the immediate effects of life choices.  And they are life choices that I make each moment.  Maybe that's why I confront life head on, I just don't have time to play.


You should also know that:

1. This disease is expensive to manage.
2. Obamacare makes me sleep better at night because I would still be insurable.
3.  I can eat sugar, frankly its about the carbs.
4.  Managing this disease is an art not just a science. (Stolen from Marzano)  Even my endo knows that.
5.  When I tell my medical practitioners about my disease, LADA, I am their teacher.
6.  Most of the time I can manage just fine; the other times I am just pretending that its easy.
7.  Getting out of routine, unplanned random acts of eating or last minute work\events you might want me to do,
     not so good for me.
8.  I won't say yes as often and don't be mad when I don't drop everything for you.
9.  I don't have what your friend, sister or grandparents have.
10.  Sad that it took a disease to help me figure out what is really important.

In spite of it all, I have a joyful life with my family and a community of friends, co-workers, and teammates who put up with me.  Who could ask for more?

Fantasy Device

A want, a desire, a wish...my obvious yearning might be for a closed loop system, but researchers are working on it.  I truly long for dia-athletic clothing, not technically a device. I might be sick, but I can still play.  Last weekend I just put in such a request with my cousin who is will be studying at the Fashion Institute of Technology in Manhattan in the fall.  I asked Kelsey to design some sporting accessories\clothing for pump wearing female athletes like me.  (Proud of you Kelsey for pursuing your dreams!)  

Snorkeling in Alaska

For the female athlete, I would like a sports bra that allows you to wear your pump on your back with a neoprene case or something to protect it.  I have pieced together such a device.  I can't sew, but have enough skills to make it work. If someone could sew it for me, wow, we might have an awesome product. Just wondering who thought that wearing your pump between your breasts in middle of your sports bra was an ideal design?  Have you ever dove for a volleyball? Laid out for a frisbee? The equipment gets in the way. Other bra designs that I have checked out have you put your pump under your arm.  Sounds a little off balance to me.  Have you ever tried running this way? I have. It doesn't work for the long haul.  Right now, I just make do.

Which gets me to my next issue, bathing suits. The sole reason that I picked my Animas Ping was due to the fact that it can stay in water for 24 hours at a certain depth. I haven't had to do that lately, but who knows.  I live in Florida and often joke that I am part mermaid. If I don't spend time in the water at least once a week, my brain begins to shrivel.   In the summer, it's time for spring hopping. I spend at least one day a week in a spring snorkeling or floating in 72 degree water. I spend just as much time in the ocean.  I love body surfing and boogie boarding and this summer after about 20 years may try to pick up surfing again.  I know I complained about the sports bra and having to put your pump between your breasts, but I would like a bathing suit in which I could swim or surf carefree with my pump. 

Certain bathing suits are definitely out. No V-Necks, there is not safe place for the pump. No tankinis---the exposed leash, a dangerous situation.  I love my modest one-piece Speedo with a square neckline, I have one in every color.  The shelf bra and the extra material are perfect for  keeping my pump safe in the water.  But I have some design ideas.  Have you ever tried to gracefully unhook your pump in order to go in and out of the water? We need a fix there.  Did you know that your infusion site can get clogged up with sand in rough water if you take your pump off?  (Yeah, that's what those two pink things are for that come in every box of infusion sets). I would love to surf and swim without being afraid of my pump being lost at sea.  I don't have that peace of mind.  For once, I would love that peace of mind.  I have enough worries while in the water.  What do I do if I go low?  Is my insulin getting hot?  Will someone steal my pump if I leave it on shore?  A million worries circle through my brain.

Call me shallow, but it is all about the work out clothing for me as I head into summer.  While I am waiting for my fantasies to come true, I won't stop living actively.

Confession

Blueberries for the picking in Florida. 

The D-Blog insists upon a reveal today, a reveal of our weaknesses or the flip-side of Tuesday's entry, one thing to improve rather than celebrate.  Wow! Really too many to count here.  I've overcome some small things like leaving my pump at home in the morning or not having the right parts in the right places at the right times.  Lately, I've been working with a nutritionist and a PA to work on my long-term goals or make improvements.

True confessions...my major obstacle is figuring out how to manage my afternoon food issues.  Breakfast and lunch go well; I eat at 6:30 am and lunch at 10:30 am with both meals prepared for me by my husband. These meals are perfect and my blood sugar response is close to perfect.   I Am Literally Starving by Three, maybe a little hyperbole, but the afternoon is my trouble zone. Maybe it is the variability in my schedule, sometimes meetings, sometimes working out, or sometimes in a car racing somewhere.  When my world is sane and I am not thinking with my stomach, a quick snack (15 carbs) and workout after school temper these issues.  Otherwise, I end up scavenging as my office, classroom or car which are not always set up for the perfect snack.  Sometimes snacks left in those places mysteriously disappear.  Does that happen in all work spaces? Just wondering!

In a perfect world, I know I must eat dinner before six and no eating after 7 and have a planned snack at 2:30 before I am starving. In the real world, I am not as perfect as I want to be.  Fortunately, the first key to solving this problem is recognizing it.  Yeah! I've done that and now you know it too. Another step is getting help.  I have a nutritionist who is working with me to combat these troubling times. She has many suggestions, perhaps the plain Greek yogurt with blueberries and walnuts can turn up more often at snack time rather than at breakfast.  She suggests almond butter and tofu, but a variety of food options isn't really my problem. It is portability and reliability. What can stand the heat in my car all day?  (For example, good for me Justin's classic PB gel packs with crackers).  What can I eat in my car on my marathon 16 hour days heading from one job to the next?  (Fast food not an option!) Where can I hide things to make sure that they are there later or when I need them?

I know I can't make changes without a goal, support, and check-ins aka progress monitoring in the teacher world. I have these in place. The next step is practice and more practice.   If you reading this and have an idea or a suggestion...feel free to help me out! I would certainly love to your advice.

Tooting My Horn

Sectionals, 2009, Insulin Pump on My Back, Catch For a Score

Celebrating what I consistently do or in my words "Am great at" is the topic of today's d-blog!   Staying active has always been a part of my life since my mother first enrolled me in swim lessons at nine months old, ballet at 3, gymnastics at 10, and then soccer in 5th grade, the only girl on a boys' team.  Later I played volleyball, basketball, softball, and track.  In college, I continued to play volleyball. My late twenties led me to ultimate frisbee and I have been playing that for over fifteen years.

At the time of my diagnosis, I had been running up to 5 miles a day and playing ultimate frisbee.  But all of that stopped.  It was, as I have shared in a previous blog, scary to be dropping to a 42 in the middle of a run and making a 911 call to your husband to bring you a coke. It was embarrassing to eat candy while working out at the gym.  It was frustrating to realize to realize that I could just die while doing the one thing I loved and knew would help me live life longer. I let that sideline me.


Last May, I said, "Screw it!"  I won't get well if I sit on the sidelines, so I jumped back in and began to play through the pain in my Achilles and the lurking fear manifested by my chronic illness.    I have been great at working out this year.  By the end of this school year I will log an average of 12 miles per week or 500 miles, maybe more since August.  I am proud of overcoming obstacles to stay active in my life.  In writing this post, I realized that I am consistent at facing the obstacles in my life and staying active has always been one way that I have worked to surmount them.

Cultivating Friendships

In my professional life a community of colleagues sustain me and help me grow as a teacher.  In my personal life, my friends sustain me, but none offer me the unique perspective or growth opportunities to learn about living with my chronic disease.  I have plenty of friends and colleagues, but I have also been slowing growing my DLN, a diabetic learning network.  That network isn't too large.  I like to dip my feet in slowly.  For example, I started this blog over 13 months ago, but it wasn't until the 12th month that I actually started writing regularly.  Likewise, I researched my Honda Fit purchase for four years until I actually took the plunge.  I am a late adopter.  Although my initial diagnosis, LADA, was almost four years ago, I never actually met another type 1 diabetic until this past January, actually 2, my new PA, and one of my college students. Still these relationships aren't personal, they are professional.  I haven't been actively seeking anyone as a "friend." Though it has been refreshing to talk to people on a professional level who get it, I haven't found anyone on a personal face-to-face level who does.  Instead what I have discovered is a DLN, a diabetic learning network via Twitter and Blogging. Both give me enough distance and connectivity to dip my feet in slowly and make "friends."

My favorite space for discovering new friends is on Twitter.  Twitter is actually how I discovered more of my kind. I have been actively tweeting for about a year now even though I have been on Twitter for about 3 years. (Remember late adopter here!)  Twitter has helped me follow my professional rock stars---Kelly Gallagher, Jeff Anderson, Lee Ann Spillane, Diave Ravitch, Susan O'Hanian, and Stephen Krashen to name a few.  In the last few months, I have discovered friends and started building my DLN, new friends.  The first friend that I made is @ConnectinMotion.  Although CIM is located in Canada, I always look forward to the #MondayinMotion question that is posted. I participate knowing that my experiences as an athlete, coach, and now diabetic are valuable as well as the responses that others post are. CIM also helped me find a Chat devoted diabetes. These spaces are my "best friends."  I have been lurking on the Diabetes Social Media Advocacy Chat on Wednesday nights at 9 pm for the past two months. I think that I may have actually tweeted last week.  If you don't use Twitter, I suggest that you check it out as a potential friend.  Twitter led me to this Diabetes Blog Week Challenge.   I just finished a month-long Slice of Life Story Challenge which was hosted by Two Writing Teachers and just completed a 10-Day Slice of Life Story Challenge with my students so I knew that I could manage a week of a topic focused writing.

One of the blogs or new friends is Celine the blogger who writes Running on Carbs.  I love her focus.  Sometimes my endo looks at me strange when I tell him about how my sugars go crazy high when I play ulty. It is great to find other diabetic athletes on the web. Their story and struggles make me strong.  It reminds me of the importance of athletics in my life, but also that the constancy of my disease and its effects are manageable.  Another d-blog friend that I have discovered today is smartDpants. I was drawn to the title and the contents of her blog kept me there.  The pictures of juice boxes placed strategically in the car made me laugh, not a mom thing, but a d-thing.  By participating in Diabetes Blog Week, I hope to find more of my kind so that I can live, laugh, and learn, not just professionally or personally, but diabetically.

Falling Numbers

Although I have a chronic disease, one that I will manage for the rest of my long life, I am pretty lucky.  I have great health insurance that covers such things as a pump and a continuous glucose monitor, expensive tools to purchase and maintain. I won't go into the cost or thank Obamacare here since I moved out of the permanently uninsurable category four years ago.  Nobody teaches you that, about the importance of health insurance until you actually have a need for it. Then you figure it out quickly.

I also have been lucky to have a team of medical experts that I have been working with for over three years to help me manage, but that hasn't been enough. I had been lacking a great coach\mentor for this process. My team is responsive with listening and answering my questions, but they don't have all the answers.  I realize that great coaches don't have to play the sport to have insight, but those who have played the sport have insight that only playing the game will reveal.

Fortunately, my great coach, Mike, entered my my life in January 2012.  He is a PA, who not only has the same disease I have, but runs marathons. One of his specialties is diabetic athletes. You only have to listen to other Type 1s across the country to realize how rare he is.   He provides unique insight into aspects of my disease that my endo cannot provide.  My endo understands the science and treatment of my disease; Mike understands the art of living with it.

Mike works with me every six weeks to review my data, evaluate my progress, and reset my goals.  He is helping me reach my long-term goal. He understands the balance of managing the demands of work with the nature of the disease.  Many don't.  He understands the hard work and confusing results.  He understands how our work can be fraught with disappointment and how the science of our disease is actually not so perfect after all. He understands the life circumstances that might make you forget a critical step in your daily life...actually putting your pump on.  He understands that there is an art and a science to managing my disease.  Therefore when my numbers were down on my visit yesterday; he understood the cost of that achievement and the value of celebrating.  One of the few areas in life where lower scores matter most.

I'm lucky. I only have to participate in a few support groups or read the d-boards to figure out how lucky I am. I not only have a wonderful supportive community of my colleagues, friends and family, but I am also fortunate to have an expert coach mentor me through this tricky world.  

PS:  I celebrated by purchasing an expensive pair of running shoes at The Track Shack.