An Excerpt from Islands and Insulin in Three Installments

6 April 1996

La Jolla, CA

I close my eyes and I can still see that moment years before, when it all changed. It’s as clear as yesterday, and yet it seems a lifetime away. The symptoms were there, but they weren't anything I really paid any attention to. Being only nineteen, I was not tuned in to what my body was trying to tell me. My time was spent ditching college classes and surfing and hanging out with friends.

I was never one to drink water, never really liked the taste. Apple juice, chocolate milk, Dr Pepper, now those were worthy of drinking. Water just seemed like a waste of time. But I started drinking it by the boat load, craving it really. I couldn’t sit through a Physics lecture without getting up at least three times to drink from the fountain (this was in the days before carrying a PBA-free water bottle everywhere was in fashion).

With all the extra water came all the extra bathroom trips. At least, that’s what I thought was causing my nocturnal wanderings towards the toilet. I tried to explain it away. It’s just the heat. It was spring and the weather was heating up.

As I got up for the third time to miss yet another section of the lecture, and was forced to drink out of that overused, under-cleaned shiny metal box of cooled tap water, I told myself the lecture was just really boring and I was looking for a way to stay awake. Physics was my favorite subject though, so I don’t know how I convinced myself of that one. Maybe it was just the best explanation I could come up with at the time.

To make matters worse, I was studying for finals in the thick of it all. I spent one evening with my roommate, Martha, at the food court on campus so that we would have easy access to the soda machine while we studied. I never developed a taste for coffee, so my study drink of choice was Dr Pepper. I must have had about eight, twenty-ounce drinks that night. And that wasn’t Diet. Diet was for fools. It was all real for me.

After studying that night, I couldn’t find a way to slow down to get some rest. I lay in that state between awake and asleep when thoughts run amok and you can’t control them and you can only sit and watch them run all over the place and make no sense at all.

My dreams that night were filled with Organic Chemistry equations. The kind where two types of molecules in their 3-D structure are blended into an entirely new molecule. They were converting over and over again in front of me, taunting me with every conversion.

I assumed the insomnia was due to stress and finals. The minor symptoms I was feeling didn’t register as the beginnings of anything serious until I was riding my bike home from school the next week and came to Hell Hill. Most of my runs and bike rides ended on this shady, tree-lined hill. It was only about a quarter mile long, but the incline made it a challenge. My goal each day was to ride to the top without being forced to stand up on the pedals. At the time I was in good shape and was making it to the top fairly consistently.

But not that day.

Half-way up the hill I was so weak and light-headed that I was forced to get off my bike and sit down for a few minutes. Normally it would have taken me less than two minutes to get home from that point. Thirty-five minutes later I was still trying to get there. I had to lean all of my weight on the bike to wheel my failing body home, stopping every few hundred feet to gather more strength. When I got home I sat on the couch dazed while my roommates tried to help. Martha came in first.

“Erin, you feeling alright?”

In the spring of 1996, La Jolla was the perfect backdrop for a wonderfully easy life. My parents were still footing the bill while I made my way through school. Classes were easy and the beach was close by. My last three years at the University of California, at San Diego I shared a three-story condo with six girls. Each year we had a different group of girls paying the rent. Every summer some of the girls would move out and new ones would move in, which made it the perfect place for me.

With that many people coming and going I could stay unnoticed, well-hidden. Martha was the only girl to live with me for all three years and one of the only ones who didn't let me fade entirely into the background. She was consistent and reliable, not one to add drama to any situation.

“I don't know,” I tried to answer. She sat down beside me trying to assess the situation.

“What happened?”

I did my best to relay the story in my confused state.

“Maybe you were just working out too hard. Here have some licorice; maybe you just need some sugar.”

If she only knew that sugar was exactly what was killing me. I recovered after about an hour and moved on. I spent the next few days trying to explain away what happened. I was sick a week before. I wasn’t a hundred percent yet. I went too hard too soon.

I had no idea it was really the diabetes starting to show itself.

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

By Ginger Vieira

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!

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.