01 December 2012

Sailing and Surfing with Diabetes

Ginger Vieira did an interview with me for Diabetes Daily a while back. Thought I would give you all a chance to read it if you didn't catch it over at diabetesdaily.com.


Sailing and Surfing with Diabetes: Meet Erin Spineto
Erin Spineto is a sailor, surfer, triathlete, and she lives with type 1 diabetes and hyperthyroidism. She blogs her story at DiabeticSailor. She absolutely fits the definition of a Diabetes Powerhouse.

In my opinion, a “diabetes powerhouse” is a person who is faced with a variety of challenges, and yet they continue to accomplish awesomely exciting things, and do intensely cool things with their time and energy. And guess what, she’s working on a book, which you can pre-order here!
Ginger: What is your diabetes story in a nutshell? (diagnosis, age, pump? etc.)
Erin:
 I was a nineteen year old college student at UCSD when I got a cold I couldn’t kick. I had almost passed out on a strenuous bike ride home from school one afternoon. I went home to my family doctor and my mom pressed the doc to test me for diabetes. 


She had noticed that I had lost fifteen pounds in the last month (I had no idea) and asked about my water consumption. I was drinking almost a gallon a day and I hated water. I was getting up three or four times during lectures at school to get more water and use the bathroom, but I had thought nothing of it. 

My mom knew better. Mom’s usually do. I spent a weekend in the hospital near my home in Seal Beach, CA and then was off on a backpacking trip the next weekend.
I got a pump a year later after getting frustrated with the inflexibility of using shots the way I was taught. I wanted to surf when the waves were good, not when my insulin was not firing off. The pump allowed me to have that immediate flexibility.

 I added the Dexcom Continuous Glucose Monitor last year and couldn’t be happier with it. I have a tendency to not feel my lows at night and it has saved my life a time or two I know.
Ginger: What has been the number one most challenging aspect of managing diabetes while being a diabetes powerhouse?
Erin: One of the hardest things in my diabetes journey has been trying to figure out how to care for other people while not letting my self-care suffer. Diabetes was quite easy for me the first few years. I was living on my own with not many responsibilities. 

My parents were footing the bill for college and living expenses. I went to classes occasionally and I was on my own schedule. I surfed when I wanted and I slept when I wanted. So if I needed to slow down for a low, or take the extra time to prepare a meal plan and shop, I could. 

If I had a stubborn high, I could drop everything and go out for a run.
Now with two kids, a husband and a full time job, it is hard to focus all of my attention of taking care of the diabetes. When the kids were brand new, I had a really hard time with this balance. They often came first. 

I would go for an entire day without testing and meals were so chaotic I often forgot to bolus. I learned a few strategies along the way (it is okay to leave my daughter in her crib if I’m low and need to get sugar) and as they have grown they are less reliant on me.
I also had to learn how to teach while having diabetes. With a full classroom and only three minute passing periods, there is little time to tend to diabetes. I have learned over the years that it will not scar the kids for life if I test in the middle of class and whip out a juice box. 

They often complain because I don’t let them drink in class, but there is always one kid in class who will stand up and tell the complainer to back off because I have to drink it because I have diabetes. It’s actually been a good chance to educate the kids on life with diabetes.
Ginger: If you could make one aspect of diabetes/hyperthyroidism easier, what would it be?
Erin:
 I would like to Skype my doctor instead of making an appointment a month in advance, driving in to his office, and then waiting an hour to get in to see him. I hate wasting time. 


I would also like to have email contact with him. My last endocrinologist let me email anytime I wanted and that saved so much time and energy.
And I would love it if my insurance company was run by a “Yes Man.” Anything I wanted it was always “Yes” and “We’ll pay 100%.” “CGM? Sure. You need new running shoes and can’t afford them? No problem. You need to go to a diabetes conference in Florida? Here’s the company credit card. Book it”
Ginger: Do you ever experience “diabetes burnout”?
Erin:
 Definitely. I think anything you do day in and day out is going to produce burnout. Especially when there is no end in sight. But I think I’ve experienced a lot less burnout since finding a diabetic network. 


The first thirteen years I had diabetes I didn’t know another living soul with the disease. I had no one to share in my quirky stories and bad days with this disease. There were no blogs or Facebook to connect with other diabetics. It was only me.
Since I have joined Insulindependence I have this whole new network of friends who go through the same things I do. It’s not uncommon to get a text in the middle of the day with a picture of someone’s CGM and either a claim of having the worst diabetes day ever or a full 24 hours without going out of the zone. 

That network has helped, not only emotionally, but educationally. Most of the diabetes tricks I know come through my own trial and error. Now I have the communal experiences of hundreds of diabetics doing their own experiments and sharing their results with me. They share tricks I would never have thought to try.
This group has made being a diabetic the norm. It is not uncommon to come to a party at my house and see ten glucose monitors lined up along the counter. Or to hear a pump go off and have five people grab for their pump to see if it’s theirs. (They need to make a way to personalize the alarms on diabetes devices like downloading ring tones on your phone). 

Later today I am off for a weekend in Palm Springs with my husband, Tony, my Type 3, my friend Michelle, a fellow Type 1, and Nate, a diabetes researcher. Diabetes will naturally be a conversation topic and every aspect of managing this disease is understood by all. No one will be asking me why I got up at three in the morning to down a mug of chocolate milk. They just get it. And that has made diabetes much less taxing.
Ginger: How did you go about learning how to balance your BG during all of your sports?
Erin:
 I was told by my doc when I was diagnosed that I would need to exercise everyday for the rest of my life. I fell in to triathlon naturally. I would run with a good friend, bike to school and work and I was a natural fish. 


I simply trained and did whatever I could to regulate my blood sugars. I knew very little back then except that food makes my blood sugar go up and exercise makes it go down. I tried to match my intake with my output. A lot of trial and error. 

Surfing was especially hard because it was impossible to test in the water. I would stick PowerGels up the leg of my wetsuit in case I got low and tried to up my sugars before going out. 

It wasn’t a very precise system at the time, but it was the best I could do and I certainly was not going to stay on the shore for any reason. So I went and learned from screwing things up and from trying new things.
Ginger: And…hold on a second, I read on your website that you built your own boat?
Erin:
 I am a sailor living on a budget. There’s no way I can afford my own boat and I want to get the kids hooked on sailing before they get too old and too cool to go with me, so I built a boat. It had to be small enough to fit on top of our minivan, but big enough to fit the whole family. I built a 11’6” boat out of plywood, epoxy resin, and fiberglass. 


I haven’t had much more training than my seventh grade wood shop class and my twenty years experience with resin fixing surfboards. The good thing about resin is that it fills in all of the holes I made cutting not-so-straight lines in the wood. You just smear some resin on it and you’re all good. 

We’ve taken it out a few times and the kids just love it. One of the best investments of my life. Tony and I are planning a camping/sailing trip in it this summer.
Ginger: I know you’re working on a book, too…tell me more!
Erin:
 The idea was spurred on by a conversation I had at an Insulindependence party with a guy I had just met. We somehow got on the topic of lows and passing out and he busted out with a recent story of how he passed out on the street from a low. He admitted he hadn’t told anyone about it, not even his girlfriend. 


And I realized that there is something in the sharing of stories that relieves this intense burden that diabetics carry around with them. I was so grateful for having Insulindependence to provide those casual experiences of sharing, but realized that there are so many diabetics without anyone to tell them their crazy diabetes stories. I figured I could share mine. You can pre-order my book here!
The book is an overlay of two stories. One, the story of my diagnosis and eventual acceptance of diabetes with all of the stages and crazy stories that go along with it. The other is the story of a five-day solo sailing trip I took last February in the Florida Keys. 

I was looking for a way to take back my life which had slipped into the monotonous and safe suburban existence. I had stopped taking risks and looking for adventures. When I was diagnosed I was warned I could not fly solo, I could not drive a big-rig, and I could not sail solo. That was enough of a reason for me to go. 

So I took a 22 foot Catalina from Key Largo to Key West, 100 miles of open ocean and some pretty hairy weather along with it.
Ginger: What do you do when you’re feeling “lazy”?
Erin:
 I take the kids to the pool and let them entertain themselves while I bake in the sun. There is nothing better than time spent letting your mind wander while heating up in the sun. It has always been my favorite lazy pastime.
Ginger: What’s your favorite junk food?
Erin:
 When I write it’s Diet Dr. Pepper and a bag of Rold Gold pretzel sticks, a habit leftover from my time studying in college. Any other time I feed my sweet tooth. Usually it’s a cake or brownies that I make, but that leaves way too many leftovers to nibble on over the next few days. 


So lately I have been making the single serve microwave cakes. Only 150 calories and enough chocolate and gooeyness to satisfy me without undoing all the work I’ve done during training.
Ginger: Thank you for sharing your story, Erin!

26 November 2012

P.S. I Love You a Lot Less Than the Movie

I have always been intrigued by the process of making a book into a movie. 

It is interesting to see the changes that get made as the story goes from being the creation of one person to a completely different creation of a whole group of people each with their own vision and talents. 

It also fascinating to me what the two mediums do to a story.
      
Every time I see a good movie, I look to see if it came from a book. I order it online immediately if it is and spend the next few days pouring over it. 

Most of the time I end up liking the book ore than the movie. I have even started searching for the book before I watch the movie so that I can enjoy the book in it's intended state before the images of the movie director have been imprinted on my brain and before I know the entire story.
      
Hollywood tends to like a happy ending. I have seen many amazing endings changed when it comes time to make the movie because the director thinks movie-goers want a happy, tightly wrapped up ending. Luckily, sometimes they include the original, not-so-clean ending on the DVD as an alternate ending. 

After watching Dear John (one of my more sappy moments) I was pacing around the house frustrated with how a complex relationship was all wrapped up and over simplified with a yes-they-finaly-did-get-together ending, even though it took killing off a great character to get there and ended up selling that relationship short.
      
When the pacing subsided, I flipped around the DVD for more content and found the alternate ending, one that lines up much more with the book. After seeing the ending that was true to the nature of the relationship I went to bed satisfied that at least one person on the set had enough sense to make the appropriate ending even though it probably got cut when the film was showed to a test audience. 

When I finally got around to reading the book, I was even more pleased at the meandering relationship developed by so many scenes that got cut in order to let the movie run in 90 minutes.
      
Last month, I re-watched P.S. I Love You. It was sitting on my DVR and nothing else really was, so I turned it on to burn a couple of hours after a hectic week. Although it was a rather cheesy movie, the second time through I was impressed with the movie's two divergent story lines and how they were weaved together to divulge the right bits of information at the right time. 

Since Islands and Insulin also uses two overlapping story lines (mine both travel int he same direction, though) I was interested to see if it came from a book and how those story lines played out in the book.
     
Up comes Amazon on my phone and I have the book in my hands in less than three days. It was another six days before I finished the 500-page (ugh!) book. And I realized all the amazing story-telling and beautifully balanced reveal of information was added by one incredible scriptwriter. 

None of it was in the book. It was all a reworking of the stripped-down, bare-bones concept of a husband leaving notes for his wife after her death. I think that was the only thing that stayed in there. that and the names of the main characters (the ones who were left in after the reworking.)
    
Looking at the two stories all of what I loved was added by the scriptwriter. Holly finding her purpose in life, shoe designer in the movie, ad exec in the book; the story of how they met, funny and quirky in the movie, utterly forgettable in the book; the relationship to her mother and similarities of both women's lives, added to the story in the movie, non-existent in the book. All of the magic was added after the fact.
     
I wonder what a scriptwriter would do to my book if it ever was made into a movie. Who would they leave out? What would they overemphasize to the point of fictionalizing the experience? What would they totally destroy the simplicity of? 

How big would they make the waves and wind that blew the third day? And could they please, please use a cute actress who would make me out to be a whole lot more charming and much more pleasant to be around???

25 November 2012

I Got Another One!!!

I was blessed to have one more Thanksgiving with Captain Jack and my Grandma. The kids have taken to calling them Grampa and Grandma Santa Claus due to my grandma's resemblance to Mrs. Claus.

In addition to some amazing vegan thanksgiving food, I got to listen to another story of the sea. This time it was of a month-long journey from the Panama Canal home to Redondo Beach, CA.

There were no hurricane's to content with and no abandoning ship on this trip. Just a month at sea, enjoying the sun and the water as they got paid to sail someone else's boat home.    


I think I just found my new career path once the kids are out of the house. I can't imagine abetter job than being paid to sail someone's 50-foot yacht home from a foreign port.

All I would need is Tony by my side, a fridge full of Diet Dr. Pepper (and some Stone for Tony) and a month to be away from it all at sea.

I also was reminded by Captain Jack that if I ever find the money to buy a boat, I should buy a Coronado 25. My grandparents owned one when their children were young and he swears it is the absolute best family cruiser around. I am inclined to believe him.

Thinking if I ever do dig up some buried treasure the first thing I will do is find that boat and give it a name that is worthy of my grandpa.

I owe a huge debt of gratitude to the Pilgrims and Indians (sorry, the Native Americans) for coming together so I could have another excuse to listen to sea stories of Captain Jack and Grandma Santa Claus in the warmth of my parents' house.

10 October 2012

Grand Canyon Hike

I seem to be thinking lately in pictures instead of words, so I thought I'd give a recap of my Grand Canyon Hike in pictures.
Our GPS Tracks
Our Camper for the Weekend




We're so happy this early in the day.



The sign that say we SHOULD NOT be doing this hike in one day. What better reason to do it.




Taking a moment to soak it all in.


Soaking my feet and knee in the freezing water.

Couldn't have been a more welcome sign.



Getting towards goofy cause we're so tired.


We finished our hike right as the full moon was rising.

Happy to be out of that canyon.

Food tastes so much better after a 16.5 mile hike.

My victory pose the next morning.

09 October 2012

The Bigger Blue Test



I spent last Saturday in LA at a  shoot for The Big Blue Test commercial and it was fantastic. 

The Big Blue Test is a month-long program to encourage people to get active and test their blood sugars. 

To participate, between October 14 and November 15, test your blood sugars, get active for 14-20 minutes and test again. 


Then log on to BigBlueTest.org to share your experience. For every log-in Roche will donate $5 to give life-saving diabetes supplies to those who need them here at home and abroad.



During the shoot, everyone was doing a different activity. Some were running, others doing yoga. They even had a band led by a six-year-old drummer who rocked. 




I got the chance to do some tarp surfing which I've always wanted to do. 



They rolled out a huge blue tarp and pulled the corner of it to form a huge wave that we would ride skateboards through. 

It is probably the only time in my life I will be in a six foot tall, stand-up barrel. 

And I got the time to take a few photos, another one of my hobbies. It was great to have professional lighting and a real set to play with.




The last shot I was in was a group shot of the whole cast rounded out by Elliot Yamin. I don't think I've ever heard a sweeter voice in person. 

After a day filled with the noise of direction and background conversation, the set was quieted by the call of "Quiet on the set." They actually say that. I laughed to myself. 


And then Elliot started singing. Damn, he's good. And not the over-processed, only-good-'cause-he's-been-remastered kind of good. 



He's got a voice that makes me feel like I can no longer use the word "singing" when I talk about the squawking I do along in my car on the 5 freeway. 

He's also got some basketball skills to go along with the singing.

This year there is also the BIGger Blue Test and I am going to take this one on. For each 30 days in a row I will test, get active for 20 or more minutes, test again and post my results. 

Since getting better from the thyroid drama, I have yet to daily get back into exercise. I have made great strides forward in doing big workouts, but the daily discipline still isn't routine.

How are you planning to do THE BIG BLUE TEST this year??

05 September 2012

Grand Canyon Trial


     Labor day was a great excuse to get in our first trial hike. Michelle and I are planning to hike/run the Grand canyon from rim to river to rim in one day at the end of September.

 I chose a 5-mile loop in Encinitas because I was familiar with it and it had some great inclines to mimic the Grand Canyon. Since recovering from thyroid disease that kicked my butt, I'm not as confident of what my body is capable of.

This hike was a great place to test it out. The bottom of the Grand canyon is not the place to figure out that you have gone beyond what you can handle. Because the first part of the hike is spent easily descending, many people venture too far before realizing it is at least twice as hard to hike back out. the official Grand canyon website is littered with warnings about venturing too far.


     The Encinitas hike couldn't have gone any better. It was a lovely 82 degrees at noon, similar to the 90 we will encounter in the interior of the canyon. Michelle was a perfect hiking buddy holding a swift pace and keeping the conversation entertaining. And my new Hoka One One running shoes made the day. They are made for long distance running with 30% extra cushioning in the soles. And I felt every bit of it. It felt like I was hiking on spring loaded marshmallows. I never even felt the trail. The last time I hiked the Grand Canyon I wore a twenty pound pair of hiking boots with a steel rod running through the sole. By the time I reached the top my feet had passed through hellishly painful to just plain numb. I know this time my feet might be sore but the will be in much better shape because of the new shoes.


31 August 2012

Straight From the Shutter

I hate it when this happens in the middle of class. Loos like it's time to get that back-up insulin into my class fridge.

30 July 2012

Penny Magnification

My night last night.



Notice the "HIGH" for eight of the ten hours I was asleep? Which means that Nick was yelling at me every two hours throughout the night. Screaming his loudest. And, yet, I did not wake up. I have programmed myself to ignore his shouts while I sleep, kind of like a husband learns to tune out his wife's nagging during the football game. I am completely oblivious to it.

One of the major reasons I got Nick was for him to wake me in the middle of the night when I am high. I want to attack those high blood sugars immediately, not wait ten hours until I wake up in the morning and realize I spent the whole night ripping holes in the small capillaries in my eyes and thickening my blood with too much sugar attached to my red blood cells. I need him to wake me when my sugar goes to low, too, as it does so often, so that I wake up in the morning, as opposed to not waking up. 

My solution? Nick's new megaphone

















This is Nick's new nighttime home. The coins rattle around with the vibrate mode and the glass bowl serves to magnify that sound like horn on an old record player. And it works wonderfully. I have heard everyone of Nick's calls since I gave him his new home. Now if only I could get him to use          
                                                                 ringtones to wake me instead of the standard beeps.

P.S. Thanks mom for the cute bowl. You couldn't have had better timing. 

09 June 2012

Sailing Into a Sea of Diabetes


Here's a quick look at the video I made for my Kickstarter Project.  It will allow me to publish Islands and Insulin


video


06 June 2012

Letter to a Diabetic Mommy

I read a blog post recently about the affect Diabetes has on our children. it was something I haven't given too much thought to. When I think about the Type 3 in my life, I think Tony. Shea is now getting to an age where she can clearly express the affect diabetes has had on her life. Since she is such a good writer, even at nine, I thought she might feel more open to express her thoughts if I let her write a guest blog post. So below is her blog post, spelling errors and all (the spelling handicap is hereditary).

Having a diabetic mom has its ups and downs. Sometimes my mom can not play with me as much. My mom can only palay outside for 15 to 20 minutes [mostly due to years of battling thyroid disease not diabetes]. 

When my mom can play we normally play cards, playing school, or playing American Girl dolls. My mom is super fun when she is playing softball outside with y family and I love when my mom is playing outside with me.

 My mom is super fun when she is not to low or to high. Having a Diabetic mom is 75% awesome and 25% not so awesome. My mom is to low or to high alote which affects playing with my mom.

 
My mom does great things for having diabetes. My mom runs triathlons. My mom is a super fast runner,  [If only she knew how slow I am], biker and swimmer. My mom is a great person and I love her to death even though it is hard sometimes I try to make the best out of the ups and downs there are that come with having a diabetic mom. I love my mommy.

02 June 2012

Check the Rearview


       In getting ready for the next phase of the book project, I've had to take a close look at the beginning of the process to remind myself of why I am doing all of this. I thought I would re-post one of the posts that really clarified in my mind one of the things I was trying to accomplish.

An Aptitude for Solitude

The Pacific from Eli's Bedroom Window
I snuck out for a few moments on my way to Back to School Night Tuesday and saw the horizon out of my open car window. I smelled the ocean and pictured myself for a moment out on that ocean with nothing surrounding me but the sea, watching the sun rise and the sun set for four days in a row. I realized how much my soul needs some version of extended solitude. 

Some people are made for that kind of thing, some think it torture. For some it cleanses their souls from all the sludge that builds up on land and brings them back more ready to attack life, for some it drives them to madness.  

I am a member of the former group. I have always had an amazing aptitude for solitude. It is what often has made me forgo going out with a group of friends to finish a project at home. It is what allowed me to survive one very lonely freshman year of college where I would go for days on end without talking to anyone except for the guy who made my sandwiches for lunches. It is, also, what has driven me to plan this solo adventure, to push the boundaries of what is thought possible for a diabetic, and what has caused me to spend countless hours planning and arranging and seeking out sponsors to get it off the ground.
Many people have asked me why I couldn't bring someone else along with me. A few were concerned for my safety, a few trying to solve the problem of finding a boat to charter from companies that seemed to outlaw solo sailors. I tell them there is an extreme difference between sailing solo and going with someone else. It's in the freedom to indulge every whim right when it hits. To go out as far from land as I want without having to consider another, to see what I want to see, to stop where I want and to drive on when I want to meet a goal. 

It is so unlike my life on land where it is always a compromise, when I am pulled in a million directions other than the one I truly want to go. Work pulls. Bills pull. Even having to choose a place to eat involves balancing the needs and wants of everyone else. Tony needs to eat clean foods and needs to eat in the next fifteen minutes. Shea won't eat meat. Eli will only eat foods that involve begin dipped in ketchup. I need to sit in a place that involves direct sunlight on my face and all of this has to be done for under twenty dollars.  

But, it is not so when you are solo. It is all me. It is simple to balance the things that I want. One opinion to sway the vote, one need to satisfy, one desire to fulfill. 
   
It's not just about indulging my will, though. It's about testing myself without having any fallback. No one else to confer with or lean on when things go wrong, no one to brainstorm with if something breaks, no one to choose a course or to figure out where we went off course and what point on the chart that huge tower actually is. 
It will just be me. When the wind picks up or the boat gets grounded, I alone will have to fix it. If you want to know yourself, to truly know of what you are capable, you have to put yourself in those situations where there is a chance that you are in over your head. 

It is only then that you can find the outer extents of what you are capable of. If you never get to the end of your rope, how can you ever know how long it is? I hope I am able to find that point so that I can come back knowing that I can handle anything this pedestrian, land-locked life can throw my way. 

We will have to wait and see...

18 April 2012

Thyroid Zombies


We are the thyroid zombies,
The walking dead,
The barely hanging on.

We hear our doctors tell us normal is between zero and forty-three,
But we are five-thousand and twenty three,
And will quickly be,
On a first name basis with our phlebotomist.

We take our pills in the day to keep us up,
And our pills at night to put us down,
And still yet other pills to fix the problems
The others pills brought on.

That person in the car next to you,
Taking that thirty second nap at a stop light,
Because he can't keep his lids open a minute longer,
He's one of us.

The girl in the cubicle next to you,
The one who is grumpy, unfriendly, and depressed one day,
And focused, angry, and driven the next.
She is one of us.

The guy in the store,
Who is stopped dead in the middle of the aisle for a full six minutes,
Searching through his brain for any clue of what he came for,
He is one of us.

The girl on the treadmill next to you at the gym,
Who just last week finished a triathlon,
But today can't make it through a twenty minute walk without pausing from weakness,
She, too, is one of us.

We are the thyroid zombies,
The walking dead,
The barely hanging on.

We fight our demons.
We swallow the radioactive pill that even the doctor won't touch with bare hands.
We drag our limp, tired bodies from their ill-used beds each morning.
We shower and get ready when every movement hurts to even think about.
We force a smile on our faces to hide the agony another day at work brings.
We workout every day when just sitting is a chore in hopes of getting back the fitness we once had.

We mourn for the days when we had a thyroid that hadn't revolted.
When metabolism was something we took for granted.
When the calories we ate were the only deciding factor,
In how much weight we put on or lost.
Now some mystical T4 number decides,
That all our hard work in watching our diet,
And exercising like crazy,
Should be rewarded with a bonus ten pounds,
To carry around on our already bloated and massive body.

We mourn the olden days when playing with the kids,
Was easy.
And that a simple walk with the family after dinner,
Was doable.
When completing a sentence without getting lost,
Happened.
When happiness was an emotion,
That could be felt.

We are the thyroid zombies,
The walking dead,
The barely hanging on.

One day we might,
Be better.
Be lighter.
Be smarter.
Be happy.

One day we might,
Have energy.

Have sleep.
Have strength.
Have spunk.

One day we might,
Not be sick.

But for now,
We are the thyroid zombies,
The walking dead,
The barely hanging on.