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How My Life With Chronic Illness Is Like a Road Trip

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I’ve decided my health journey is like a bunch of different road trips.

I require daily IV infusions for hydration and blood pressure maintenance. I’ve had my new port-a-cath just over a month, as my previous port had to be removed three months ago due to an infection. Things were going quite well  with my new port. I was back to regular infusions and starting to feel a bit better.

Last week, my home care nurse noticed the post site was looking red and angry. You guessed it. Infection. This time it was a superficial infection called cellulitis. So many questions and emotions ran through my mind. Why, oh why is this happening again? Does my port need to be removed? If this port goes bad, then what? How will I get the infusions I need?

The infection got worse before it got better. One night it looked really bad. My doctor had me scheduled for surgery the next morning to remove it. This year alone I have already had several peripheral IVs placed, a PICC line placed, one port removed, and later a new port put in. Each of these happened on different visits. I was not looking forward to repeating the process again.

But sometimes miracles happen. The morning of surgery, my port looked normal. Because I had no symptoms of infection and because the site looked good, surgery was put on hold. Does this mean I’m over the scary part? I’m not sure yet. My doctors say it may get better. They also worry that things may look good now, but once the antibiotics are gone, the infection has a good chance of coming back because my immune system is compromised.

I’m considered immune suppressed because of the meds I take to control my other health problems. Right now we are literally taking things one day at a time, trying not to think of the “what ifs.”

How does all this compare to a road trip? To understand what I mean, you have to understand the unique way we traveled as a family during my growing up years.

My parents love road trips. There were times when, out of the blue, my parents would say “We need to get away!” Which meant grab your stuff, we’re gettin’ out of here. It was sporadic, but oh so fun! Sometimes the trip was planned, but mostly, they would pick a direction and we’d just take off. No plans on where to stop along the way, no specific activity or sightseeing plans. We’d just go. A few times, we didn’t even have a plan for where we’d stay once we arrived at our destination.

It was wacky fun and always an adventure.

Those unplanned trips are now a huge part of our very best family memories. My Dad has a knack for finding random tourist spots. We always, always stopped at those spots, and had a riot taking silly pictures together. Ever driven along I-80 through Wyoming, where the drive pretty much looks the same for hours on end? My dad somehow turned that stretch into a fun adventure too.

There were times we’d run out of gas, or get stuck in traffic for hours because of construction. We took shortcuts. We got lost. There were major detours. I’m pretty sure there were flat tires and car repairs done along the way. Once we couldn’t find a hotel room and slept in the car at a truck stop. No joke!

The thing is, I don’t remember all the hard things we encountered during our trips.

Yes, they did happen. Boy, did they happen! But those times didn’t ruin our trips. No matter the twists and turns, we always made it to our destination and had fun. Always. In fact, there were many times those detours took us on a better route — routes we never imagined but still enjoyed.

When my siblings and I reflect on our road trips, we talk about the good times. Sometimes we talk about the hard parts, but ultimately, we end up going back to reminiscing about the good times.

This is why my health journey feels like those road trips. My trips have a lot of good and a lot of hard times. Moments when my body needs repair. Times when there is a detour that I don’t understand. Instances where I’m stuck with another health problem, which feels like those traffic jams in a construction zone. Sitting there, waiting for hours, thinking it’s never going end; wondering why you’re on this road anyway.

I’m willing to guess you’ve felt like that too.

For me, this repeat port infection makes me feel scared and lost, not knowing which direction to go. Not knowing where this journey will end up.

Then, I remember. This moment in my life is just another road trip. Eventually, I’ll arrive at my desired destination. If I focus on the rough parts, I’ll never remember the good. So my husband and I relish those good times. And by good times, I mean those small, day-to-day things that can be overlooked. Those small things are actually really important moments — like the way my guy pulls me into his arms after work each day. Times when my boys get along and laugh together, or smiling when my teenager wants to see how much taller he is than me. Fun times when my youngest thinks he’s as tough as Batman, and flies into the car after school — he’s pretty good at it too.

I hold on to these good times, just like my parents, siblings and I cherish those road trip memories. When my husband and I look back on life, those small moments will be what we remember most. Those instances above? They have all happened during this port infection, which I now refer to as my current road trip.

Remember the good, my friends.

This story originally appeared on Hope From Heidi.

Getty image by Rez-Art.

Originally published: June 5, 2019
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