Day 8 | Another Really Hard Day

Part 1 | A Bad Night at Red Rock

I started feeling itchy when we pulled into our parking space at the Red Rock campsite but I so wanted this place to work out that I rationalized it away. “It’s probably just detox, it’s not very bad anyway, and I’m not getting any other new symptoms” I told Brett. I was most definitely in denial but I didn’t realize it then.

Brett believed me and faithfully did all of the work to set up our tent and we both fell into our cots exhausted. I had a few hives already and I started to barely feel it in my throat. So I decided to take a Benadryl and go to sleep.

Imagine my disappointment when I woke up at around 1:30am desperately itchy, with hives on almost every part of my body and swollen fingers and toes. Brett woke up to my scratching and whimpering and he brought me to my senses. All I wanted was to take another Benadryl and go back to sleep but he thought we should get out of here. Deep down, I already knew he was right.

It’s hard to accept that this is my life right now and even harder to accept that this is Brett’s life right now. That the poor man has to wake up in the middle of the night to pack up and drive for hours because his wife is having a terrible reaction (after he already drove and shopped for hours because his wife can’t eat food from a normal grocery store). He’s so faithful and steady. How I wish I could do something to make it up to him. It hurts me to see how much he has to suffer too. He’s so brave. Caregiving is hard, people.

Something Sara Mattson said the other day came to mind now as I sit in the car while Brett is packing yet again. She said there was no such thing as making a mistake with this illness because even if you end up staying in a contaminated place you’ll learn something new from your reactions.

I think what I learned in the wee hours of this morning is to listen to my body earlier on before the symptoms become unbearable. And not to take chances with suspicious symptoms even when it’s inconvenient. In the end, the result of ignoring the reaction will probably end up being way more inconvenient.

This is such a learning curve! And a major paradigm change to realize how many of my symptoms are location related.

Part 2 | Backcountry Camping, Take Two!

After several hours of driving, we got back to Death Valley and Brett was able to find a dirt road our car could drive on. It was very difficult and took us 20 minutes just to get one mile down the road but we made it! Brett found a place to pitch our tent while I slept a little bit in the car.

When I woke up I felt much better again and was able to help do some laundry. There’s always so much laundry to do because I have to change my shirt every time I decontaminate. It felt good to be able to do something to lift the load off of Brett’s shoulders a tiny bit. It’s quite impressive that I was able to do anything at all after such a severe reaction and a bad night of sleep. Normally, I would be stuck in bed with extra pain after a night like this. It just goes to show what a difference the air quality can make. I know it seems crazy that it could make such a big difference. I’m still getting used to it myself.

Unfortunately, the good feelings didn’t last for long because we had to go back to civilization to get ice for our cooler and water. We were also hoping Brett could get some work done and were expecting a package at the post office. True to this weeks theme, the errands were frustrating and unsuccessful. The post office had just closed, I reacted to all three places we stopped in and we had to leave before Brett could get any work done. My throat was swelling and we didn’t want to take any chances with that. We drove back in silence and returned to the “feel good area” feeling pretty defeated. How are we supposed to do anything if I can’t go anywhere?!

It feels like we’re trapped in a fire and the only exit is in flames. The best option we have is to walk right through the fire and hope we survive the burns. The solution to this hyper-reactivity is oh so difficult but the alternatives are even worse. One thing is for sure, it’s going to require some superhuman strength for us to get through this intensification phase. Good thing we have access to that through Christ.

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