Taking the Show on the Road

TILTed Road Trip 2015

Pictograph and family at Horse Thief Lake in Colombia Hills State Park.

Pictograph and family at Horse Thief Lake in Colombia Hills State Park.

I pulled off another family summer road trip last month. When you live in FL, you don’t want to vacation at the beach, you vacation in the mountains or desert, especially for the benefit of the children who think palm trees are normal foliage. So we went to the anti-Florida, which we deemed to be Oregon. It was a new place for all four of us. Since we had good success with our pop-up camper road trips the last two summers, we decided to attempt a version of that again. We flew to Portland, rented an RV, and drove around the state for two weeks. That is the simple version and I have pictures to match that story. We had a grand adventure.

32 Feet!

32 Feet of RV!

Electric Bikes in Bend

Riding electric bikes in Bend

Running into Pacific Ocean fogginess, much colder than our normal Gulf of Mexico waters.

Pacific Ocean Fogginess


But the reality of what went into making that trip happen, before, during, and afterwards, does not really show up in the pictures, as my fellow spoonies know. Yet when I recall this trip, my exposure negotiations are as memorable as the fun times, because they were as constant and integral.

There is no way, that I know of, to really minimize the flight exposure. I try to start any travel well rested and with no recent exposures so my tolerance is as good as I can get it. But flying across the country is a long day of exposure and I felt it. Add in the shuttle ride to the hotel (mask on) and the hotel itself (windows open) and I had used up all my tolerance by the time we got to the RV rental place the next day. Fortunately, I had started that relationship way in advance. We used a mid size dealer such that we had enough RVs to choose from but small enough that the company worked with me on several issues. We selected an RV that was three years old and had minimal carpet or upholstery, hoping for that magic level of sufficient outgassing but without any mold settled in yet. The company worked with me on cleaning supplies and were happy to store packages for us in advance knowing that I would be traveling with a lot of my own gear. For example, I could not use the propane kitchen appliances in the RV so I brought my own hot plate and electric skillet to use whenever we were plugged in at a campground. I also brought my own bedding, a car air filter, and larger room air filter. I do not travel lightly.

Note my electric hot plate and small air filter.  Flown across teh country for RV adaption.

Note my electric hot plate and small air filter, flown across the country for RV adaption.

Even with my extra gear, I knew there would be issues with the RV and we discovered these as we traveled, largely owing to propane avoidance. If we were not hooked up to electricity in a campground, the refrigerator kicked over to a propane source unless we preempted this with a switch to the generator running off the vehicle engine. The water heater always used propane and its exhaust was right by the RV door and kitchen window. The RV needed some airing out but not while we were in a campground filled with campfire smoke or when any appliance was running off propane. This all adds up to a lot of reconfiguring the RV depending on what mode we were in – driving, camping, eating lunch in a parking lot, etc. We learned it all from trial and error, the error being determined by how sick I felt.

The perks of this travel mode, however, were wonderful. I could eat the food I needed to, when I needed it. I could rest when I needed to. I was in charge of my environment to a moderate degree. We would drive a bit in the morning, do a hike, have lunch in the parking lot, drive some more, explore some tidal pools, then set up camp at a nearby campground and have dinner, play a game with the kids and sleep. Traveling with my relatively safe home meant that we got to do twice as much because we didn’t have to keep adjusting for new environments in hotels, scouting out allergy safe restaurants, or lose time driving to new accomodations. Instead we focused on the adventure. We hiked to waterfalls and through redwood tree forests, we white water rafted, explored a lava tube cave with miner helmets on, rented electric bikes, explored light houses, saw sea lions and whales, coastal aquariums and high desert museums (both of them had large outside exhibit areas which worked well for me). We did a lot and I got to participate in most of it.

Hiking through some Redwoods.  They are tall.

Hiking through some Redwoods. They are tall.

Rocks for scrambling over in Smith Rock State Park.

Rocks for scrambling over in Smith Rock State Park.

I didn’t drive the RV; we couldn’t count on my head being reaction clear enough. My tolerance got worse over the course of the two weeks so that the return travel day was quite miserable. As were the days of recovery once we got home. Even now, three weeks later, my tolerance is not what it was before the trip. I forget sometimes and attempt to do something I can usually do and then my body rebels and I have to think oh yea, it’s still recovery phase. It may be for another three weeks. This is what it means to me to be a moderate reactor. Individual reactions are not usually debilitating and have some variance depending on my recent exposure history. But there is no dodging the bullet; if exposures continue it all adds up and knocks me down. So I recovered from accidental exposures quicker the first week of my trip than I did the second week. And it’s taking me many weeks to get back to to pre-travel levels. I am hoping that I will not have any new triggers or new chronic symptoms as a result of this trip, which has been the case in the past.

The question is… was it worth it? Are my negotiations on how to spend my health points an accurate reflection of my personal priorities? There’s no absolute right or wrong way to do this but health points are my most important currency, so I want to make sure I am spending them with some sort of intention. I’ve been thinking about it a lot as I struggle, with varying degrees of patience, to recover from the travel. So I do not say the following as advice to others but more as a self motivational speech so I will keep traveling because right now I’m so tired it’s hard to imagine doing it again. Ever.

I have to explore the world with my children so they have a global perspective. I have to have adventures with them because they are my favorite people in the world but they are only mine for a while longer. I have to keep pushing my limits so I know I have not given up. I have to get out in the world and use phrases like chemical sensitivity, ask for acknowledgement of a medical condition, and request appropriate accommodations. I have to spread awareness for all those TILTed folks who are stuck in isolation. As a moderate reacting canary, I may not be able to effortlessly fly around anymore but as long as I can still bump and skim along, I have to keep getting out there.

Out there.

Out there.

6 thoughts on “TILTed Road Trip 2015

  1. I know this all too well. But do agree that we must continue to get out there and do, because the alternative means sickness wins. Ugh. Glad you had a somewhat enjoyable trip though. : )

  2. I enjoyed your post. I just got back from a vacation to see family. You reminded me that I am still in recovery mode – I forget sometimes and I beat myself up because I’m not getting as much done as I think I should.

    I’m glad to hear about your success in renting an RV. That’s something we have talked about doing.

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