Sunday, October 2, 2011

Challenges and Disappointments during week one

Our first destination in Oklahoma was Osage Hills State Park.  It turned out to be a wonderful choice.  The park was clean, our site was spacious, and the air was good.  After drizzle and fog in St. Louis, we were ecstatic about the sunshine and clear skies.  We took an RV site with electric and set up our tent on a concrete pad.  That warm flat surface was delightful in the cool evenings, holding onto the heat of the day longer than the air, and in the late afternoons, we enjoyed its warmth, sunning ourselves and doing yoga.

I visited Frank Lloyd Wright's only skyscraper called the Price Tower in Bartlesville the first full day. There were lots of interesting historic buildings in town, which led me to wonder around in the heat longer than I should have.  The next day we went to the Tall Grass Prairie Reserve in Pawhuska.   This visit was all driving – perfect for a recovery day -- on dirt roads through the 32,000 acres of prairie.  The lure are the herds of bison roaming everywhere.  I got a few great pictures of those hairy mammals that once covered half of the US

By day two, the weather turned cold – low 50’s at night, overcast and blustery until 2 pm – then down into the mid ‘40’s the third evening.  I was cold at night and in the morning.   In addition, coughing and sneezing and blowing seemed to worsen.   My first thought was ‘a cold,’ until I remembered that the same reaction occurred when I arrived in the semi-arid landscape of eastern Colorado, where we thought I might be dealing with allergies.  But when I cleared up in a similar environment after 10-12 days, I developed a new theory: this is my body’s natural detoxification of whatever gunk I’ve collected in my sinuses.

Hopefully the same is happening now.   A CT scan of my sinuses taken Sept 6 by a Columbus ENT showed blockages in 4 areas.  His recommendation was surgery to drain the sinuses.  I visited a Dayton ENT surgeon turned allergist and had him look at my films: “They look completely normal,” he said.  But he did a deep nasal swab and gave me script for Diflucan (fluconazole).  Research studies have shown that a very high percentage of chronic sinusitis is caused by fungal infections, as I learned from a friend who visited Dr. Dennis.  His website, (CHECK) is chock full of helpful information, and was one of the reasons I asked the Dayton ENT about fungal causes after the Columbus ENT said there was no way to tell until a post-surgical biopsy.

As soon as I started to take Diflucan, I experienced some relief of my sinus headache.  So I’m operating under the assumption that I carry fungal infections deep within my sinuses which, in the absence of moisture and mold, are draining on their own.  Perhaps they are the source of the mycotoxins floating around in my body:  ochratoxins and tricothecenes per testing from Real Time Labs, Carrolton, TX.  Of course I can’t be certain I’m not reacting to some type of western plant pollen.  Still, if the reaction clears soon and leaves me feeling better, I’ll know it is detox.  

My second destination was Roman Nose State Park, about 3 ½ hours further west and south.  I chose it as a good location for a long-term stay because it was close to Oklahoma City (1 ½ hours), had a lodge with wi-fi and an outdoor café, spring fed lakes with no history of algae blooms, and camp sites away from the lakeside.  But when we got there, we found the campsites unsatisfactory.  The sites away from the lake had no electric, the RV areas were like parking lots, the restrooms were a long walk, there were lots of annoying lights, and the dead grass was dirtied with cigarette butts and horse poop.  It made for a very unpleasant experience, and I felt a whole lot worse the next morning.  Plus, the bathroom was old and dirty.  Yuck!

So we talked to the ranger and got a recommendation for the Wichita Mountains National Wildlife Refuge. An online search said the bathrooms were ‘scary.’  We nixed that place and went down to Red Canyon State Park, only an hour south.  The red canyon cliffs were scenic, but it was incredibly hot.  To find a little shade, we took a site on the grass.  In the morning the dew was thick and it took nearly 2 hours of daylight for the sun to rise over the canyon walls and begin warming the picnic table.  

I was continuing to get worse.  I didn’t want to travel again, but I didn’t feel this place would work out for me for a long stay.  I sensed that the canyon was collecting polluted air; we could hear the traffic noises of I-40 throughout the night.  A quick online search revealed that the air quality in the nearby town of Hinton was not great (it was coded yellow rather than green).  A large chemical company had an experimental plot just above the canyon ridge, and the surrounding area was largely agricultural, which leads to many pollutants from fertilizers, dust, and insecticides/herbicides. So at 3 pm we decided to break camp and drive further southwest to Wichita.

What a treat was in store for us in the wildlife refuge!  Although the drought led to three wildfires this year, and huge numbers of trees are dying, the air seems clean and fresh. Wind whips across the short-grass prairie and cools the wooded campsites. Buffalo and long-horn cattle roam the fields and cross the roads.  Deer, hungry from the lack of berries and fruits, gather around picnic tables begging for food.  At night, coyotes howl and bark while cows bring their calves close to the campers for safety.  I haven’t yet seen any elk but my neighbors have.  Something for tomorrow.

Away from the small particulate matter in the air at Red Canyon, I hoped to improve rapidly, but instead, at bedtime I was too congested to breathe.  Even doing nasal wash with neti was insufficient to open up the nasal passages.  Fortunately, after another full day of heat, the sneezing and blowing has reduced by half, leaving me feeling quite optimistic that I’ll continue to clear up. 
Although the bathrooms turned out to be nice here, and the campground is packed with retired couples in their RV’s, all interesting people with lots of stories to share.  But this place is also not ideal for a long-term stay.  There is no cell phone signal at the campsite area, and one has to drive quite a long distance for wifi.  It will be a challenge to get onto the Trivedi group blessing calls I usually do 2x a week, while keeping up with e-mail and blogging will be difficult.  But I’m excited to see how I might feel once the sinus symptoms abate.  I’ve added low dose of cholestyramine to my regimen to bind and release the mycotoxins, and now my challenge is to find a way to resume the coffee enemas that were helping me to feel so much better in the past. 

More challenges on their way tonight, as I spend my first evening alone.  Will I be content or nervous?  Happy or lonely?  I feel a sense of joyful anticipation mixed with sadness at David’s departure.


  1. I mean this with the greatest love and respect, but I think your health would turn around if you'd try to stop obsessing over every little detail. People have and do recover from MCS and even mold...

  2. WOW...that comment is obviously by someone who's never had be their own detective to get IS the details and paying attention to them that help you get better! I admire your tenacity and willingness to keep teasing apart the puzzle of your illness and the courage for sharing them with all of us. Know I'm rooting for you on your journey! How is the battery/solar set up working? Take care, Lisa in ID


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