More Than Just a Vacation: Traveling with hATTR

I came home from our cruise with a suitcase full of dirty clothes, way too many pictures, a few impressive bruises, and a heart that was still trying to process it all.

If I'm honest, this wasn't just a vacation. It was one of those weeks that made me laugh until my stomach hurt and, at other moments, reminded me just how much hereditary ATTR amyloidosis has changed my life.

Worrying about ATTR symptoms before we even left for the trip

Before we even left, my biggest concern wasn't forgetting sunscreen or packing enough clothes. It was my stomach. It's been giving me fits lately, and I honestly wondered if I'd spend the week sick. Thankfully, it behaved for most of the trip. It still managed to catch up with me in the evenings, but during the day I was able to eat things I hadn't been able to enjoy in weeks. That alone felt like a blessing.

Finding joy on a cruise, despite my symptoms

There was so much to love about the cruise. The entertainment was fantastic, our cruise director kept everyone laughing, and 80s Night was easily my favorite. Shelly and I even found ourselves singing at Pig & Anchor, and I don't think either of us stopped smiling.

Making meaningful memories

Some of my favorite memories weren't planned at all. They happened after midnight, sitting on our balcony with Brad, listening to the waves hit the ship while we stared at the stars. Those quiet moments reminded me that sometimes the best parts of life aren't found in excursions or schedules - they're found in simply being still.

But there were hard moments too.

Mobility, leg weakness, and traveling

I had pictured myself floating in the ocean for hours in Grand Turk. Instead, my legs cramped so badly that I wasn't sure I could even walk, much less get back out of the water. For a few moments, fear took over. I've watched this disease progress before. I watched it steal strength from my dad, and when something changes in my own body, my mind can't help but wonder if this is another step down that same road.

The cramping eased, but the reminder stayed with me.

Adapting our travel plans around my mobility

The rest of the week became a lesson in adapting. Amber Cove meant relaxing in the pool instead of trying to do everything. At Celebration Key, the ocean was too rough, so we rented a pool noodle and floated in the pool instead. The Bahamas were beautiful, and my scooter gave me the freedom to see so much more than I could have on foot.

Feeling like a burden while living with ATTR amyloidosis

Still, I wrestled with something I know many people living with chronic illness understand.

Feeling like you're holding everyone else back.

Every time we returned to our room, Brad had to take apart my scooter and lift it inside because it wouldn't fit. His shoulder was already bothering him, yet he never complained. My family never made me feel like a burden either, but sometimes your heart tells you things that simply aren't true.

Grieving a version of my past self

Then on Wednesday, I fell on our balcony. One minute my legs were there, and the next they weren't. It left me bruised, but also made me think about how much has changed in just 1 year. Walking through the sand took everything I had. I couldn't climb the ladders into the ship's pools. Even getting onto an elevator became a challenge as people rushed past. Thankfully, Shelly quickly became my elevator bodyguard, making sure I actually had room to get on.

Grieving the version of me who didn't have to think about this.

As the week went on, I realized I wasn't grieving the cruise.

I was grieving the version of me that could do all of those things without thinking.

That's a hard thing to admit.

Facing the frustration of a disease that keeps progressing.

I'm frustrated that my body won't always do what my heart wants it to do. I followed every recommendation my doctors gave me before this trip, and I still dealt with swelling, weakness, and exhaustion. Progressive diseases don't stop progressing just because you're on vacation.

What ATTR amyloidosis can't take away from me

But here’s what they also don’t stop:

Laughter.
Late-night conversations.
Ocean waves.
Live music.
Soft-serve ice cream.

Making memories with people you love.

This cruise looked different than I imagined it would, but I'm so thankful I went. It reminded me that while this disease continues to change my body, it doesn't have to steal my joy.

Some trips change the places you visit.

Others change the way you see your life.

This one did a little of both.