Close up of a woman covering her eyes to reveal hands that show the landscape of her confidently walking through mountains with hiking poles, sunglasses and a wide brim hat.

To Go or Not To Go

I am the planner. Do you have a band aid? A tissue? An aspirin? A tape measure? Yes, I do, I am prepared. But, not for thyroid eye disease (TED). I never know what TED will throw at me. So, when I was facing my first big trip in many years, I was anxious and overwhelmed.

For awhile I thought of every excuse to back out of it. It is hard to back out of a trip once you say yes, tickets are purchased, plans are made, and people are counting on you! All those excuses went on in my mind. I really wanted to go!

Planning for a trip with thyroid eye disease

Then I started to plan for every contingency. We were going to California. Of course, you can get anything you want in California. But I would not be in a big city – I was going to National Parks, Redwoods, and Yosemite! Parks on my very short bucket list! But also parks that would not have everything I could possibly need.

Although I was traveling with my family, I wanted to be able. Able to walk down a trail, able to walk in the dark, able to walk in the sunshine, able to manage without someone having to hold my hand.

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Packing my necessities

I wanted to bring everything I could imagine. Packing the extra pair of over my glasses sunglasses just in case my usual pair broke was important. Knowing I had a blow-up wedge pillow brought my anxiety down a notch. I knew hiking sticks would help me walk without help no matter what the terrain was or how sunny the day and made me a little braver. Then there was the very bright, very small flashlight with a wrist band that fit easily in my pocket. I knew I could walk out into the darkest night with that little light in my hand.

How many hats did I wind up packing? Of course, I needed my hat with a large brim because that is the best keeping the sun out of my eyes, but it also flies off my head in strong wind, so I needed a smaller brimmed hat. Baseball caps do ok in a pinch but aren’t enough in very bright sun – even with my massive sunglasses. Hence the large hat supply.

I did not forget my eye masks, both the ice ones and dark ones. Both soothing in different ways. The list seemed endless and much of it had to go in my carry on, just in case!

I was nervous. I was worried. I had my doubts that everything would be ok. But TED has robbed me of so much I did not want it to rob me of my ability to travel too!

Did I use everything?

I did need that wedge pillow. We were lucky if our “rustic” lodgings had one pillow per person. Since having TED, I need to sleep with my head elevated.

Did I need the hiking sticks? Yes, when walking in the deep forest trails in the mottled sunlight it was difficult to see the roots and rough terrain. Hiking sticks let me walk at a good pace without tripping over obstacles I probably would not have seen.

I did wear every one of the hats I packed, although in pictures I now regret the choices.

I will never again travel without eye masks and flashlights.

Luckily, I did not need extra sunglasses.

The one thing I packed at the last minute that I was not expecting to need was a rapid Covid test. I am currently taking Mycophenolate Mofetil for TED. It is an immune suppressant. When I spoke to my doctor about going on this trip, he said to be cautious in crowds. I was. Somewhere on the road in the central valley of California I pulled into a rest area and pulled out that rapid Covid test.

Well planned travel with TED is possible!

My carefree travel days may be behind me, but I have learned that I can travel with careful planning. Have you been fearful of traveling because of the uncertainties of TED?

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