road trip…

I used to love road trips. Good snacks, great music, a friend or two, and the open road. Much of my college experience was filled with mini  road trips – a benefit of going to school just a few hours from the Grand Canyon, Las Vegas, beaches, Mexico, and great concert venues, no doubt.  Unfortunately I have found that traveling seems to clash with my new role as a dysautonomiac, and road trips are no longer the carefree adventure they once were.

For a few weeks the BF and I had planned to take a road trip last weekend. The week before we were to leave was not a great one – I struggled with symptoms for many days. I experienced headaches ranging from moderate pain to severe migraine for six days straight with no relief in sight. I also experienced greater muscle weakness than usual. Each day I got home from work I would sit in my car for a few minutes and stare at our condo on the third floor and wonder how the hell I was going to get up there. Our complex does have an elevator, but from my parking space I have to walk twice as far to get to it. In the morning I usually take the stairs down to my car, but when I return home it’s usually a debate between a few flights of stairs, or walking twice as far to the elevator. The elevator usually wins, but with the muscle weakness, I just couldn’t do it. So, I took the stairs, but had to sit down and rest a few times. All in all, it was about a twenty minute stair climb. There goes my career as an olympic stair climber 🙂

So, finally by Wednesday I decided that something needed to be done if I was going to sit in a car for six hours on Saturday. A trip to Urgent Care was needed. So, Wednesday morning I drove straight to my new favorite Urgent care (is it sad that I have a favorite??) – did not go to work, did not pass Go.  Fortunately, Urgent care was deserted and the nurse took me back to an exam room almost immediately. Nurse after nurse, doctor after doctor came into my room and performed a typical neurological exam – could I feel this, could I move that?  With prolonged headaches, such exams are routine to make sure a tumor isn’t likely and an MRI isn’t necessary.  And that, ladies and gentleman, is why I don’t usually go to the ER or Urgent care. I know what’s wrong with me – it’s called POTS, and if I have chest pain or headaches, it’s not a tumor or a heart attack, and I don’t need any tests to tell you that. I need two hands to count the number of EKGs I’ve had in the past 5 years, and every single one has come back normal. I don’t want to pay for anymore, and I’m pretty sure my insurance company doesn’t want to either.

So, after determining that an MRI wasn’t necessary, the doctor decided what I really needed was some IV fluids and intravenous meds. A friendly nurse came in, wired me up, and let the fluids flow.

A bag of saline, bag of pain killer, and bag of anti nausea medicine later, I was feeling much better.

I ended up being at Urgent care for over 6 hours, though I was passed out for most of the time. When I got home, I grabbed a pillow, put on my jammy pants and fell asleep again on the couch.

One of the frustrations of having a chronic illness is that you never know how you’re going to feel on a given day. By Thursday morning I  knew I needed to make a decision about the road trip – we were driving with friends and if I was going to back out, 48 hours notice was the absolute minimum I felt I could give. Yet it is very difficult to tell on Thursday how I’m going to feel on Saturday. I can speculate, but even then I’m often wrong. It has certainly happened in the past where I attended events I probably shouldn’t, and missed out on events I could have attended.  I wanted to go, so I decided I would go, and if I wasn’t feeling well I would deal with it.

Fortunately I didn’t feel too bad Saturday morning and the trip started off well. However, we hit a snag a few hours into the trip. Traffic was at a complete standstill on the highway out in the middle of the desert. This was the line of cars in front of us…

And this quickly became the line of cars behind us…

It was clear we weren’t going anywhere for a while, so we turned off the car and got out. Most other cars had the same idea and we all ended up hanging out and chatting in the middle of the highway. As this occurred in the desert, it was rather warm, and as you all know, POTS and heat are not friends. After a while I started getting lightheaded and dehydrated. Lately when I get symptomatic my tongue starts to swell up. It doesn’t become large enough to endanger my breathing, but it does effect my swallowing and talking. As we were standing out in the desert, my tongue began to swell. I tried to stay hydrated by taking frequent small sips of gatorade, as I could only swallow a little at a time. After about 45 minutes, whatever was causing the traffic cleared and we continued on our way. I continued to drink Gatorade and about an hour later I was back to “normal.” Fortunately the rest of the drive was uneventful.

The weekend went well and two days later we were back in the car for the return road trip. The drive back went on without incident, and we returned home exhausted and ready to go to work the next day. I ended up feeling quite symptomatic for the next day or two, but when you get to see two adorable faces like these, it’s all worth it.

“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’” —Mary Anne Radmacher

Stay tuned.
– L