Sunday, August 7, 2011

Looking for Paradise

Writing from Lawrence, Kansas at 4 am.  We’re at a campsite on Lake Clinton, a peaceful, spacious meadow surrounded by trees and fields.  A wonderful soft breeze caresses my skin and seems to keep the mosquitoes far away, allowing me to sit at the picnic table and write while David sleeps in our tent.

We are on our way to Colorado, to explore how I do in a dry environment at high elevation.  We’ll also spend a few days with family attending the wedding of my first cousin’s daughter.

The last few days of preparation before our trip were particularly challenging.  The outdoor temperatures climbed into the high nineties and I got tired of wearing my respirator in the house.  So I took it off, had one comfortable day, and then started having the same reaction to the house I had after fogging with Aerosolver – a feeling of being mentally stressed and emotionally unstable, pain in soles of feet and difficulty standing, culminating after a few hours in a loss of my normal good cheer.  Ugh!  I went back to the respirator, but we’d already taken the tent down, then it rained hard outside.  On the day of our departure, I sat outside at a wet table as often as I could, and within 2 hours, my mind felt almost normal.

Then we set out on our trip.  I nixed our plan to spend a day in Columbus, Indiana looking at the amazing architecture in that city because I figured that I’d be too tired to walk around and enjoy myself.   David got tired of driving about 45 minutes east of Indianopolis, and due to a Gincon conference in town, we couldn’t find a decent room for the night, although we wasted an hour checking in to a Quality Inn only to discover that the rooms either smelled musty or reeked of another unidentifiable odor.  At 3 am we bedded down in a beautiful Hampton Inn by the airport and slept in the luxury of a clean, air-conditioned suite with soft sheets and cushy quilt.  The 9 am alarm went off too early, but I had scheduled a master blessing with Guruji Trivedi which needed to begin by 10 am.  The blessing was very powerful.  I felt energized and peaceful afterwards.  I took over the driving and got us another 4 hours west  -- to St. Louis, Missouri.

In St. Louis, about all we did was see the great arch from a distance and then stop for lunch in a neighborhood of stately stone houses off Lindell Avenue, near the medical complex associated with Washington University.  We sat outside in the warm, muggy air by potted plants and a blooming clematis trained around a metal arch.  Then we headed west again for Kansas City, where we booked a room at the Q Hotel, the only place is Missouri listed in the Safertravel directory for people with MCS.  I feel the pdf of this directory was a waster of money as there are no reviews by chemically-sensitive people and it appears that the hotels can list themselves if they so choose without being checked for cleanliness, accuracy, and air quality. BTW, if anyone wants a copy of this useless guide, please e-mail me privately.  Perhaps it has something useful in states I haven't driven through.
The Q Hotel was a let down after the Hampton Inn.  The room was small, and it smelled of green, ecological cleaning chemicals.  It was already 8 pm, and since I was too tired and hungry to start looking around for another place, I thought I’d be okay for the night.  And I did sleep.  But both of us awakened with stuffed noses – a sign of mold residue and dust.  Oh well.  I did the nasal rinse and went on, pleased that my reaction was mild, and recognizing how my memory (or rather lack of it) worsened whenever I got another exposure.

By 10 am at the Nelson Museum of Art, I was able to walk around for about 45 minutes before I needed a wheelchair.  We spent a good two hours viewing the permanent collection, and then walked two blocks to the Kemper contemporary art museum, looked around some more, ate a fabulous lunch, and went out on the town of Kansas City, ready to warm up in the sun after being refrigerated all morning.  Stripping off sweater and wood shawl, we drove around with the truck windows open past the mansions on Ward Parkway.  Alas, the poor indoor air had already pushed me too far into reactivity to recover quickly in the outdoor air.  I spent the rest of the day with swollen glands and raw, scratchy throat.  Only when we got off the highway and set up camp at Clinton Lake did I begin to feel my glands return to normal and my sinuses clear.

But another surprise awaited me in the tent.  I had a new air mattress (which didn’t smell at all – the Big Agnes brand boasts no VOC’s) but it didn’t occur to me that the clean, smelly plastic container in which we had our blankets and pillows stored could have a detrimental impact.  How foolish I was!  Within a few hours, I awakened from slumber all congested and with an acid stomach. 

One of these days I will learn to be prudent.  But how? I don’t want to walk around thinking of everything as a potential danger!   I remember in the past, when I first identified gluten as a food sensitivity, how I’d often take a little taste of bread or cookie.  Eventually I learned that the only thng that works for me is 100% compliance with a gluten free diet.  I have less control with the air I breathe, so hopefully I’ll become less sensitive.  That is my goal.  If biomarkers like MMP-9 (general inflammation) don’t drop down on their own, I have several choices for medical intervention.

For now, a heightened sensitivity seems to be crucial to the healing process.  It is the barometer of my inner guidance telling me what to avoid.  And it is truly a wonder and a gift!  In the past, I’d get sick hours, sometimes days after an offending exposure or food with no idea of what was contributing to my misery.  This left me feeling powerless to have any control over my body.  Now, I can maintain some illusion of control, which helps me to experience my own power.  As I remove myself from those things that trigger symptoms, I feel myself getting stronger, more energetic, and increasingly clear about what I need to do next to move ahead on my healing journey.        
Update from Denver, CO.
I had a weird experience the next day in Kansas: mucous in my eye that occluded my vision despite several cleanings of my contact lens.  I tried driving when I thought the problem had been solved, only to have my vision become so clouded that I clutched onto the wheel and tried to steer between the lines until we could get to a freeway exit.  As the day progressed, I came to understand that I was continuing to have a reaction to something. I put on the respirator for awhile, but it got worse. By nightfall, I felt as if I were coming down with a respiratory infection.  


This morning at Bonny Lake State Park in eastern CO, I woke up feeling rested and enjoyed a splendid sunrise over a landscape of rolling fields of yucca and sage and grass. I felt so good I wanted to take a walk, but by the time I got back to the tent, I was quite tired, and had chest pain from the inability of my body to adjust to the high altitude (4200 feet).   

After a short rest, we headed west to Denver, but I kept getting worse. Then I added insult to injury by sitting inside my cousin's house -- she has a cat and, it turns out, a moldy carpet in her bathroom which has been that way for over 3 months.  My nose has been running nonstop ever since.  

Now I'm sitting in the tent in the backyard wondering if the trigger is some pollen or grass in Colorado, or something in David's truck.  For now, the truck theory captures my inner truth monitor.  

Not sure what I'm going to do in the long haul.  For the next 3 days, we're going to a campground about an hour from here, and we'll stay there for 3 nights.  The site is close to the venue where the wedding will take place and that will minimize, but not completely eliminate exposure to David's truck.  

Don't know how I'm going to know anything about how well or how poorly I do in different locations unless I can eliminate all other variables, and that seems impossible. 

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Please add your comments here. If you have a question specific to your own condition, please e-mail me directly at drjanisbell@gmail.com I cannot give medical advice. If you want to suggest a product or therapy you think I should try, please let me know if you have used it, what you used it for, and how it helped you.