lifestyle Archives - Page 13 of 40

Traveling On The Ketogenic Diet

We love to travel, so when we started on the ketogenic diet four years ago, I worried that the diet would close off the world to us. We could still go to Colorado and Florida because we had friends and family there with kitchens. There were also stores where we could buy ingredients for his meals and pharmacies if we ran out of medication. But what about the places where we would be on our own?

Our first big trip was almost two weeks in Hawaii. I wasn’t sure how easy it would be to find specific ingredients we would need to make food. I also didn’t know if we could find a room with a kitchen, so we prepared as much food as we could to take it with us. It was our first time traveling with a cooler, so I read through the TSA rules to see where they stood on traveling with ice. I researched coolers to find one that would fit enough food but wouldn’t be too big to carry on the airplane. The week before, we made enough food so that we had meals available for the entire trip. The cooler was heavy, but it allowed us to enjoy our trip without worrying about staying in ketosis.

This year, we went to Panama. At least in Hawaii, there was an ABC Store on every corner. In the remote places we were going to in Panama, that would not be the case. It was also not likely that the closest store would have the specific ingredients we needed. There would also not be a pharmacy to stroll into if we needed a prescription. Again, I hit the internet to read about bringing medication and food internationally. There were no specific restrictions about bringing my son’s food into the country, so we again prepared enough meals to cover the trip plus a few extra days. Even though we were staying in homes with kitchens, making the food ahead of time removed many variables. We also upgraded our cooler to a backpack to make it easier to carry on those long travel days.

Now, traveling on the ketogenic diet feels routine. We prepare the food ahead of time. We know the routine to pack and get through security. And we no longer worry about the world being closed off to us. If we can make keto work in the mountains of Panama, we can pretty much make it work anyway.

If you’re looking to travel on keto, here are a few tips:

Find complete meals you can prepare ahead of time. Ideally, it’s also food that can be frozen, like ice cream, pizza, and pancakes (syrup went in checked baggage). Some restaurants will heat food for you, some won’t. Keep that in mind when you plan the meals.
Make sure everything is frozen. Freeze all of the food for the journey and use the blue ice packs to keep everything cool. Make sure the ice packs are frozen, though, because TSA won’t allow them through if they aren’t.
Keep a letter from your doctor handy. If a situation arises where you may need to explain the diet, a letter from your doctor can come in handy.
Don’t forget utensils. Not every segment of your journey will have access to forks and spoons, so bring some with you. Plastic, disposable utensils are best because washing silverware while traveling is not always possible.
Get to the airport early, just in case. We generally get pulled out of line by TSA when they scan the cooler, so having the extra time creates a more stress-free experience.

My final piece of advice is don’t be afraid to travel. It is a big, amazing world out there with so much to see. The ketogenic diet doesn’t need to prevent you from experiencing it.

If you have any questions about traveling on the ketogenic diet, feel free to leave a comment or send me a note.

Ignoring The Warnings

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

When I was younger, my vision of my future included many things. It included a cabin in Maine where I would write and take my sea kayak out to harvest lobsters from my traps. It included a job where I made a lot of money doing something that I loved. It included traveling around the world, soaking up the sights and flavors of every culture on the planet. And it included a family that would share in these experiences and would enrich my life with their own experiences and dreams.

Man plans, God laughs. ~Yiddish proverb

That vision for my future didn’t include a lot of things. It didn’t include the pressure and demands of a job later in my career. It didn’t include the realities that come with having parents who are aging. And it didn’t include the curveball we were thrown when our son was diagnosed with epilepsy.

The combination of these factors created an environment that tests us every day. The relentless seizures. The widening gap between our son and his peers. The insecurity of our lives. The distance that the exhaustion and pressure create between us.

There was a movie called “The Perfect Storm” that detailed the account of the Andrea Gail caught at sea during the 1991 “Perfect Storm”, where multiple storms merged to create a super-storm. The crew ignored the warnings about the storm and made choices that took them further from safety. Eventually, underestimating the power of the storm, they turn back into it and the ship is lost.

Lately, I’ve been feeling like we’re caught in our own storm. I’ve been ignoring the signs and now we’re trapped in the middle of it and the waves are getting bigger. Occasionally, one of us will get thrown overboard but the others pull them back to safety. But there is only so long we can hold out. Eventually, we will get tired. Eventually, the ship will be lost.

I underestimated the strength of this storm. I thought we were lucky. I thought the seas would calm. I thought we had been through enough. But the storm is not done with us yet.

The warnings are in front of us.

It’s time to steer our ship to safety before it’s too late.

NEXT UP: Be sure to check out the next post by Elaine at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

A Movie Script Ending

Our journey with epilepsy has the makings of a movie.

It has the time before. The time before epilepsy. The time before seizures. The time before medication, and side effects, and surgery.

It has the inciting event. The first seizure in the lobby of the arcade. The second seizure onboard an airplane. The “ticks” that turned out to be seizures that snowballed into status epilepticus and months in the hospital. The days when my son couldn’t talk or move. The night when my son was surrounded by a team of doctors trying to save his life.

It has an enemy and its name is Epilepsy.

It has the struggle. Every day. Early morning seizures. Exhaustion. Navigating the world in a fog. Trying to keep up. Learning. Behavior. Therapy. Rebuilding.

But it doesn’t have an ending. In the movies, the hero faces challenges, defeats the enemy, and returns home victorious and transformed. But we’re still on the journey and there isn’t a clear path home. Our enemy is one that he could face for a lifetime.

I started this post years ago. It sat unfinished, but I had an idea of how I would end it.

Compassionate people reassure us and say some children grow out of their seizures. We smile and nod, but its like they are watching from the seats in the theater but we’ve seen the script. We know what’s going to happen next but don’t want to reveal any spoilers. If they knew the ending, this isn’t a film that most people are going to hang around to see. Because people love a happy ending.

I wrote that at a time when things were exceedingly hard and relationships with the people around us were being tested. Some of those people are no longer in our lives. But, in spite of how I felt it was going to play out at the time, some people stayed. We’ve gone from feeling as if we were always going to be alone to cherishing what we have. Who we have.

It is true that our story may not have an ending, but it does have one more thing. The journey revealed many lessons about ourselves and the people around us. It showed us who is in our corner. The struggle forged stronger bonds. The journey has given us allies and surrounded us by our village. Our people. Our family. And we draw so much strength from knowing that we are not on this journey alone.

“There are no words to express the abyss between isolation and having one ally. It may be conceded to the mathematician that four is twice two. But two is not twice one; two is two thousand times one.” ~GK Chesterton