Tuesday, August 16, 2011

Something IS making a difference

I can’t report that I’m miraculously ‘cured’ in the pristine air of a high desert wilderness area as some individuals on the Phoenix Rising forum have claimed.  But something is making a difference.

At the wedding on Saturday night, I danced for nearly two hours.  I rested often between songs, but sometimes did 2 or 3 songs in a row.  It was so much fun!  And I didn’t have the ‘pay the price’ the next morning. 

My inner voice guided me to leave as soon as I started to feel a bit chilled.  I wore wool long underwear and socks to sleep to make it easier on my body, as maintaining body temperature takes energy, and I wanted the maximum energy for recovery and repair.  In the past, when I’ve done too much exercise, I would start to feel cold regardless of the ambient temperature, as my body shut down its ability to make ATP, the energy molecule.  This time, I was warm all night, despite the drop into the 40’s during the night, and I slept fairly well, waking more often than normal to eliminate the many refills of water and lemonade which kept me hydrated during the party.  What a delight to enjoy a party again!  May all of you reach this point in your recovery!

The next morning, I did yoga out in the sunshine, meditated, and then received an energy transmission from Guruji Mahendra Trivedi which supported the self-healing powers of my body sufficiently to remove any vestige of soreness or of that hit-by-a-mack-truck feeling which usually greets me after a day of activity indulgence.

This same Sunday also marked my adjustment to the high elevation (about 8000-9000 feet).  At our new campsite, along the edge of Chalk Creek near Mt. Princeton, I’ve been able to walk back and forth to the toilet, up and down a little hill, without shortness of breath, weak legs and the urge to sit down.   

In the week leading up to the wedding, we camped for two nights in Keyser, a campsite in the Pike National Forest about midway between the fishing village of Deckers and the ranching village of Buffalo Creek.  We waded and dunked in the Platt River and then drove through some amazing rock formations, understanding why this range is called the Rocky Mountains.

The campsite was more primitive than I’d expected, but after about 3 hours driving round and round on dirt roads, I was willing to take anything offering scenery and privacy.  We had running water and composting toilets.  I used my respirator once and then used a jug from Doctor’s Data designed for 24 hour urine collections, which allowed me to quickly become an expert in voiding in a standing position.  I hiked behind fallen logs and trees to defecate and do my coffee enemas, collecting in doggy poop bags and used coffee cups for later dumping in the toilets.  I sat at the picnic table and took care of washing my contact lenses over one of our plastic cereal bowls.  It was surprisingly un-stressful.  I moved into the tent when the temperature and light dropped around 8:30, and slept from sunset to sunrise.

I was looking forward to three nights in a bed at the lovely Anchorage Inn, but after taking a nap on the day of our arrival and waking up sick, I knew I would not tolerate the place for the evening.  I enjoyed a hot bath in their Jacuzzi, went to dinner with my family, and set up my bed in the back of our pick-up truck. 

Despite these precautions, my short exposure to the inside air, where barn cats sneak in and dust from the stables and dirt roads leaves a thin veil over everything, left me quite ill by morning.  I woke with the old mold symptom of sinus headache, congestion and bloody mucous, and a piercing cramp in my calf.  I wouldn’t have associated all these with mold reactions if I hadn’t read Shoemaker’s Surviving Mold, where he explains how these symptoms arise from elevated C4a and other inflammatory markers.   I enjoyed the best breakfast I’ve had on this trip – poached eggs over sautéed mushrooms with a tarragon cream sauce – and then departed in search of a cleaner environment.  With a master blessing from Guruji Mahendra Trivedi scheduled for that morning, I set my intention to accelerate the self-healing process so that I would quickly recover from the set back.  And I did!  All afternoon I visited with family, and when the evening rehearsal dinner arrived, I felt good enough to enjoy three more hours of conversation, great food, and a few delicious sips of wine.

The wedding was held at a ranch about 15 minutes away.  We stopped there to hang out with family and learned we could camp along the creek on the back of their property.  It was the perfect solution.  We got our meals with the wedding party, used my cousin’s cabin to shower and dress, and had total privacy and quiet and night with the most splendid views of rock outcroppings named cathedral pinnacles and lion’s head.

After the wedding, we headed southwest to the Arkansas River Headwaters area, found a beautiful site by Chalk creek with an awesome view of the white cliffs and the peak of Mt. Princeton, and the next day enjoyed a visit to the Cottonwood Hot Springs and a brief dip in frigid Cottonwood Lake.   I got tired at the hot springs, which was not surprising since I dehydrate easily and drinking water passes through me like a stream, but I felt reinvigorated after the dip in the lake.  Now I’m getting ready for another fantastic blessing.

I am SO BLESSED to be recovering at such a wonderful pace with fresh air and Guruji’s amazing energy transmissions.

Tuesday, August 9, 2011

Oxygen Adventures

Lily pond at Anchorage Farm, Pine, Colorado

Do you have a shortage of oxygen?  Dr. Paul Cheney has argued that everyone with CFS has symptoms similar to high altitude sickness, because we have insufficient oxygen available for normal body functions.  Dr. Ritchie Shoemaker's treatment protocol for CIRS involves taking EPO, a medicine that increases the ability of the body to process oxygen.  With diminished oxygen, cellular functions diminish and eventually shut down. 

Picnic area near Pine CO
Our plan was to camp at about 6000 feet in a Colorado state park not far from Pine.  But as we drove from Denver out Rt. 285 into higher elevations, I felt better.  My nose cleared and the symptoms of allergy like running nose and tearing eyes stopped.  We reached the town of Pine Junction at 8000 feet and turned down the mountain side towards Pine.  As we descended, my nose filled with fluid. So we stopped for lunch ina beatiful picnic area beside a burbling brook.

 After lunch we decided to camp at higher altitude.
8000 feet might have been okay.  But as we drove along 285, we didn't see anything.  We followed the road to the Guanella Pass where two camping areas were marked. The lower camping area was closed for construction and up we went to Burning Bear, just before Guanella Pass.  An alpine meadow stretched out between rows of peaks, the wind whipping across and cooling the sun-heated air.  The campground was tucked into the western side of a mountain, leaving us exposed to wind and sun.  We set up our tent, hauled cooking gear out to the picnic table.

I felt great.  I was surprised at how much energy I had.  I knew to be careful at c. 10,000 feet, especially since we'd been at sea level two days earlier, but I still walked back and forth from truck to picnic table, from picnic table to bathroom, from bathroom to truck.  I sat quietly and chopped onions.  Back to the truck.  Sat while I grated cheese.  Back to the truck.  The dust on my feet and my flip flops started really annoying.  My jacket went on when the sun passed behind a cloud and came off when the sun came out.  For the past four days I couldn't remember where I had stashed anything (hence I couldn't take or upload pictures).  My lack of ability to remember the simplest things at Burning Bear didn't seem like an ominous sign.

At 5:30 we at our dinner of onion soup.  At 6, I was suddenly too tired to walk to the bathroom.  I lay down and felt my heart rate accelerating.  My mouth felt dry.  I drank more water, but started to get a headache, and it seemed that the more I drank, the drier my mouth felt.  I sat up for awhile to set up our bed, brush my teeth and prepare for bed.  As the sun set and the temperature dropped, I curled up under 3 " of down loft and tried to relax away the worsening headache, queasiness and urge to move my bowels (it was too cold and I was too tired to walk to the bathrooms.)  David came into bed just as the sun fell behind the summit of a western peak.  It was not quite 8 pm.

"You'll feel better if you sleep," he assured me.  Yet visions of oxygen danced in my head.  I felt a sudden nostalgia for the nasal oxygen Dr. Majid Ali had me try back in 2005.  At the time, I hadn't felt any better breathing it --there was plenty of oxygen in rural Ohio.  Now I could smell it and taste it.  My headache became a vice around my temples.  My queasiness turned into an urge to expel the contents of my gastrointestinal tract. 

"We have to get me to a lower elevation.  Let's put the bedding in the car, move our suitcases and things into the tent.  We'll drive down the mountain and sleep in the truck."

"The road is paved heading north towards Georgetown," the campsite attendant told us, and that seemed infinitely better than the bumpy dirt road under construction we'd ascended.  What he didn't tell us what that it was twice as long, and that we had to go up another 1000 or 1500 feet before descending in a series of tight switchbacks.  Our truck stopped at few times on the descent to leave mementos of my recent meals along the roadside.  The neon signs of a motor Inn in Georgetown never looked more welcoming.  With toilet and clean hands, I went back out to the truck and finally had a cell phone signal to call 911.

Fifteen minutes later, on the advice of the medics, I was hooked up to an oxygen tank and a saline IV.  Oh sweet, sweet oxygen.  I felt my breathing relas, my headache dissipated.  But the stress, or the deprivation, left me with strange muscular tremors in my leg muscles.

The ambulance raced the 47.2 miles to the nearest Denver hospital while David struggled to follow them at 80 mph, praying no state trooper would decide to pull him over.  At the hospital, the ER doctor gave me another IV, more oxygen, and turned off the lights so I could sleep.   At 3 A.M. I was discharged and joined David in the hospital ER parking lot.  We awoke to a strong sun and a gaggle of hispanic construction workers pointing at the odd sight of a gray-haired couple climbing out of the back of a pick-up truck.

Now I'm back at 8000 feet, sitting in the garden of a bed and breakfast where we'll be staying from Thursday to Sunday while David makes the ascent towards Gunnison Pass to rescue our tent and clothing.  I'd love to be lower -- say 6000 feet -- as the air up here feels a bit thin, and I'm not interested in repeating last night's experience.  Fortunately, Pine is down in the valley, with campsites beside the Platt river and some small lakes, all at about 6000 feet.  How wonderfully inviting!

My friend Robin's ENT, a specialist in fungal sinusitis, told her that to reduce exposure to fungal spores, mycotoxins, and fungal DNA fragments which trigger the immune response that sends out memory T cells into a tailspin, our inflammatory cytokines skyward, and our compensatory immune regulation crashing, she needs to explore one of the following environments:
  1. right on the beach --not a block away
  2. high elevation
  3. desert
Right on the beach is not an option for someone with less than a million to spend on housing.  Besides, beach properties are prone to hurricanes, and hurricanes bring water damage.  High elevation is a harsh climate, and one that taxes our already-comprimised ability to deliver oxygen to our cells and transport it through the mitochondria to produce ATP.  So it looks as if I am left with the desert as the only option for a new place to live.  Or perhaps, a dry desert-like climate at a moderately high elevation will work out. 

In the meantime, a few more days of sneezing and wheezing in this splendid Colorado scenery.  With rest, your supportive prayers and the grace of the divine, my over-sensitive immune system will calm down and I'll stop reacting to the grass and tree pollens around here.  I know that my system was triggered into a state of hypersensitivity through exposures to dust, mold, cats, dogs and cleaning solutions in the Kansas City Q Hotel, my cousin's Denver suburban house, and my husband's truck. I used to have terrible ragweed allergies when I visiting my parents in West Virginia because their country house was full of mold.  The same ragweed in Ohio didn't bother me if I was rested and in a cleaner environment.

I am starting to see why living in a trailer makes sense to many people with MCS and CIRS.  Never before was I aware to this degree of how many environmental triggers contribute to the condition known as CFS.  In some ways, despite the unpleasantness of my recent adventures, I am learning first hand exactly what my body wants and needs to restore itself to good health.  Lisa's beatifully written story, Losing Everything to Gain Everything, inspires me to move forward courageously with inner guidance tempered by medical advice.

Thanks for your prayers.  It's a disapppointment that I don't feel fabulous out here, just as it was a disappointment that Aerosolver didn't transform my house into a safe haven. But I go on with the certainty that I will find what I am seeking.

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.