Sunday, September 25, 2011

Ready. Set. Go.

I’m on my trip!  What an adventure!

It took a whole lot longer to get out of Ohio than I wanted it to because I was too attached to doing various chores I’d had in mind before I realized I couldn’t tolerate the local environment.   I was also a bit wary of camping by myself, and for an extended period, having done nothing more than an overnight or weekend trip in the past.  But because I had travelled alone to Italy, France, and England for work, I knew I could handle some of the challenges.  It was the details about getting food and water that concerned me.

Online and through telephone calls, I asked for advice from others with this illness who had explored camping as an intermediate step.  I took into account many of their recommendations.  One was to get a portable car refrigerator/freezer.  That took several days of research, since I didn’t know anything about them and couldn’t go into a store to see one.  I discarded models with bad reviews, those that produced a lot of heat, and those which could only lower food to 30 or 40 degrees below the outdoor temperature since I remembered the 100 degree summer heat and wanted my food colder than 60 degrees!  I compared the power consumption of these machines since mine would be running on my car battery while I drive and, if I ended up at a campsite without electric power, on a portable 12 volt battery.  The brand everyone recommends as the most reliable and energy efficient is Engel.

Engle has an awesome video of two frustrated bears trying to break into one of their coolers.  They stomp on it and claw at it to no avail.  But what sold me on Engel – since I don’t plan to go into bear country and if I did, would not leave my cooler out on a deserted field--was the Engel model with a freezer setting.  One of the biggest nuisances of camping this summer was having to buy ice, drain the melting ice from the cooler, stuff it in and keep rearranging the food.  Instead, with my little freezer, I’ll rotate freezer packs in and out of the cooler.  A little thermostat with a probe inserts in the cooler with a digital readout of the temperature to tell me when it gets too warm inside.  My food and refrigerated meds will be a whole lot safer, and when I use up all the frozen food I bought, I can set the Engel on refrigerate and dispense with ice packs and cooler if I keep my food plan simple.

My second purchase was a gel battery to charge the refrigerator and my laptop when AC power is not available, since both work either on AC or 12 volt DC current.  A friend and my husband hooked up the socket that looks like a cigarette lighter to the battery.

Next on the list was a solar charger.  A friend recommended a nifty, 80 watt portable solar panel that comes in an aluminum case made by Solarland.  I found it online for under $500.  I was glad my birthday was coming in a few days because I knew I could expect a nice check to help cover these expenses.    

Last was a Targus 12 volt charger for my laptop in the hope that I could use my time alone at a campsite to write, read, blog, e-mail, and skype friends and family even if AC current was not available. 

I think I flipped a bit on having DC current because our summer experience in Colorado took us to one primitive campground after another.  (A primitive campground has only composting toilets and a cold water pump.)  I didn’t know where I’d end up when spirit started guiding me.  I decided to start with a semi-arid climate in Oklahoma, about the closest I could get to a ranching area, and researched various campgrounds in the hope of finding hot showers and no lake with algae problems. 

After ordering all this stuff, I had to wait for it to arrive by UPS or Fedex.  Aaargh!  The fridge arrived Thursday.  I verified that I could lift it in and out of the car without assistance.  The laptop charger arrived Saturday.  I felt like a race horse chomping at the bit waiting for the solar panel, which was promised by the end of the week but didn’t show up.. 

I was also starting to get nervous.  Each week at home my health steadily declined.  If I got any worse, I wouldn’t be strong enough to take the trip.  My mother was calling everyday in tears begging me not to go alone.  David volunteered to accompany me for the first few days.  I promised to stay at a campground with a lodge so I wouldn’t be alone. 

Then disaster struck!  I crashed.

We all know what a CFS/ME or CIRS crash feels like.  And once it starts, there is no telling how long and how far the fall will be.  The symptoms vary from one person to another but for me, symptoms are pain in soles of feet and legs leading to inability to stand, mental confusion, crazy moods and thoughts including suicidal ideation, dry mouth, and an inner feeling of every nerve cell in my body trembling. 

I went into fear and self-pity, wallowed around for awhile, then got a grip on reality.  I have power, I realized, even if I don’t have total control.  The energy transmissions I’ve received from Guruji Mahendra Trivedi have increased my self-healing ability.  I can make choices about my thoughts, my feelings, and my actions.  I need not hang out with thoughts and feelings that don’t serve my goals, even if they pass through my consciousness briefly.  For all kinds of things pass through our minds, just as millions of sounds and images pass through our senses and we learn to focus on those that interest us while discarding the rest.

How often do you notice the hum of the refrigerator motor?  Do you hear the crickets outside, the traffic, the distant lawnmowers, the chirping of birds?  When it gets quiet, and when our brain quiets down, we hear the sound of our breath and our heartbeat, sounds which are always present but rarely in our consciousness.  Similarly, when we look at the world around us, we focus in on what we are looking for, and rarely if ever notice details that aren’t important.

So I shifted my consciousness.  And soon I was feeling alive to the pulse of divine energy running through me.  My mood lifted, and I also got clarity about the cause of my crash, but I’ll get to that later.  I felt strong enough to get out of the tent.  I took great care that evening to lie down as much as possible.  I also took a GABA enhancer (alprazolam = Xanax) early in the evening to offset the excitability and high stress hormones.  I drank a lot of water.  

Because I still felt weak the next morning, I had to walk a fine line between getting things ready for the trip and preventing any exacerbation of symptoms. The solar panels arrived Monday and my belly tightened:  how was I going to fit everything into the car?  It would be a very tight squeeze!  And they were so heavy and hard to carry.

To simplify my trip West, I looked online for allergy-free hotel rooms and located one in St. Louis at the Hyatt.  It was only available Thursday, and by booking it, I fixed my date of departure.  I kept hoping I’d miraculously recover my strength, but by Tuesday morning, less than 48 hours after my crash, I knew recovery would be impossible at home.  Worse, because I was feeling weak, tired, and fragile, I began to doubt whether getting away from home would make any difference.  What if I’d fallen so far that even a month away wouldn’t bring me to the state of vitality I’d enjoyed in August?

Although there are lots of uncertainties with this illness, I feel very blessed from the good fortune of meeting Trivedi and responding to the energy he transmits through blessings.  While these blessings haven’t restored me to health – as I initially hoped they would from the scientific data supporting the responses of trees, plants, chickens, and test-tube microorganisms to this energy – they have done many remarkable things for me.  In addition to increasing calmness, steadfastness, and fearlessness, the blessings have made me more aware of my inner truth, what Trivedi calls “our inner GPS.  And so, as I listened and waited for guidance about the crash, I recognized a probable cause in a change in my home environment and knew, with unwavering firmness, that it was a strong contributing factor.

We had opened the plastic Zipwall between the living room and the rest of the house.   The living room was the only room that hadn’t been thoroughly cleaned and fogged with Aerosolver.  It still had some of the old toxic dust in it, dust that had contributed to my illness of many years because of its composition of fungal and bacterial fragments, dust mites, and microscopic particles capable of entering through the lungs and the nasal passages.   I had seen dust on the glass tables, and asked the cleaning woman to dust and vacuum the room.  For the next twelve hours, I had felt somewhat hyper.  At the time I thought I might be getting nervous about the trip, but in retrospect, I saw this as the beginning of the reaction that led to the crash.

In Surviving Mold, Ritchie Shoemaker describes the process through which CIRS develops as he follows patients who, for legal reasons, need to reenter buildings that made them sick to document, through the various biomarkers I described in a previous post (March) titled  Is CFS CIRS? Here is how I understand it (without the benefit of the book nearby to consult).

When biotoxins come into the body (whether mold, bacterial, maybe also chemical), the immune system kicks into gear by increasing inflammatory chemokines and cytokines.  If the body fails to bind those toxins/antigens and eliminate them, inflammation increases.  Some of the inflammation gets out of hand, such as high IL-10 which works against the process of binding antigen.  Soon various hormones are secreted to regulate the reckless inflammation.  One of the most important is cortisol, (which is why Docs give out a cortisol analogue, prednisone, to reduce inflammation for poison ivy, asthma, swelling, and itching.)  Cortisol competes with aldosterone at receptor sites.  With aldosterone being the steroid that regulates salt and water retention, the pituitary hormone vasopressin declines, making urination more urgent, more frequent, and urine more watery.  In addition, some of the products of inflammation stimulate an increase in leptin which further lowers levels of MSH (melanocyte stimulating hormone), the one that keeps us happy with endorphins and sleeping soundly with our own melatonin.   In sum, no sleep, stressed, peeing a lot, grumpy or worse, increase pain.
Sicker quicker.  It takes longer to develop this pattern in the first place, but once it has happened, we’re like ‘recovered’ alcoholics who return to drinking and find themselves as bad or worse then they were before they stopped.   Similarly, even if it took a large quantity of toxin to make me sick in the first place, now I can fall back to the same dysfunctional level with a tiny amount, a small enough amount to be left in the cracks of living room furniture, floor boards, and lamps.

Knowing that departure was critical, I agreed to my mother’s pleas to take David with me on the trip.  He had been feeling worried and stressed, so much so that he had come down with classic symptoms of a heart attack –chest pain, reflux and digestive discomfort, and
fatigue.  I sat under the tarp on a damp cushion in the gray Ohio drizzle reading my e-mail, drinking a cup of tea, and wondering, at 9:45 am, whether the early riser I was married to would awaken!  I finally woke him made him promise to go to the ER.  Two hours later, he called to ask if I thought he should stay overnight in the hospital.  I dashed down there, talked to the ER doctor, and sat in the room with David waiting for his blood test results, for his EKG and vital signs were normal.  “Do you want to take a week’s vacation in Oklahoma?” I asked.  He nodded affirmatively as his lips curled into a smile.  And so it was decided that we would leave together on Thursday morning, reaching St. Louis before dark.

We had one day to fit everything into my car, now with the added challenge of David’s suitcase, sleeping pad and blankets, and additional food.  He fit everything together like a jigsaw puzzle, adding a difficult piece at the end, moving something to another place that didn’t fit perfectly. 

To add to our stress, our realtor called at 5 pm Wednesday to ask if she could show the house the next day (it would be our 2nd showing since listing in April), and we rushed around putting things away and leaving the kitchen cleaner than we normally would.  In the end, we pulled out late for a long trip (10 am), but we reached our destination in St. Louis safely.

The Hyatt’s respire room was not ideal and I got reactive. Housekeeping had promised to wash my sheets in just water (no fragrant soaps), but I could smell bleach in the sheets or blanket near my nose.   The air filter kept the air much cleaner than a normal room, but the carpeting and a huge stuffed chair with ottoman harbored the kind of fine dust that may trigger me.  Our trip to Whole Foods exposed me to a nosefull of chlorine bleach as I passed the fish counter.  It was no surprise that sleep was difficult and fretful all during the night.  But thankfully, I wasn’t as bad as I’ve been in other hotel rooms.  I would definitely try another Hyatt respire room, but I’d try to find one with hardwood floors and ask in advance for upholstered chairs to be removed from the room before it was cleaned.

The next morning we headed south on I-44 to a campground near Bartlesville OK, where we found warmth (low 80’s), sunshine, and dryness.  And that’s where I am now.

Sunday, September 4, 2011

Back at home, fading like an old flower

As soon as we got into humid Arkansas, everything shifted.  At first a tiny bit.  But soon I could feel my good state of health slipping away.

We camped at huge Lake Ouachita, said to be the cleanest lake in Arkansas, and after setting up at an exquisite site on a narrow peninsula, we went for a dip.  An hour later we were both itching.  A hot shower before bedtime helped a little, but sleep was light and difficult  (usually one of the first signs of an exposure to some toxic trigger.)   A raccoon the rangers nicknamed Daniel kept me up chewing on  the gluten free bread and Whole Foods chocolate bars he stole from our unsecured cooler. He devoured  2 1/2 chocolate bars, including one with espresso beans..  I'll bet he was wired the next day!

I've heard from 3 other PWC's, all with mold illness induced CIRS, that they can't tolerate being near lakes.  Some think it could be the ciguatera toxin from algae blooms.  A related chemical, labeled a ciguatera epitope, has been found in the blood of 96% of CFS patients tested at the University of Hawaii.  The National CFIDS
Foundation has sponsored this research (see but their theory has not been taking up by many other researchers.  I hope they figure out what this 'epitope' is, since it's supposedly not the exact same thing as the ciguatera toxin that Shoemaker discussed in his earlier research on biotoxin illness.  If it turns out to be, then 96% of people with CFS will have CIRS from ciguatera.

In any event, no more dips in 'clean' lakes for me.  I'll stick to mountain streams which move too rapidly for algae blooms.

The day before we landed in Arkansas, we stopped in Oklahoma City.  Despite the high temperatures (102 degrees on, 105 on a local bank sign), I felt fabulous.  David and I walked around the botanical gardens, drove to the riverfront and walked around there, ate ice cream.  In the past I would've been beyond exhaustion by now.  But I wasn't.  So we walked around more by visiting the Memorial to the 1995 victims of the bombed Federal Building.  It was moving -- beautiful and peaceful and evocative.  I still felt energetic walking back to the car.  It was 7 pm and we'd been touring for over 3 hours!

 David wanted to get far from the city, so we drove another two hours to Lake Okmulgee State Park and set up camp in the dark.  We were a bit further from the lake than we were the next day, and I slept great. Also, Lake Okmulgee was not 9 feet lower than normal, although it was low.  I took a quick dip in the morning but didn't suffer any ill effects.

We brought the rain everywhere we went, starting in Pike National Forest, where it rained the night before the wedding after months of drought.  The rain followed us south, and in Santa Fe, was relentless -- 3 nights in a row, nonstop the last night,  In Albuquerque we had a drencher as we drove to a campsite and another drencher visiting a friend in the NW quadrant of the city.  It rained a bit at Lake Okmulgee, and at Lake Ouachita, which was 9 feet low when we arrived, the sky opened buckets.  We drove away the next morning in rain so thick we could barely see the road.

Crossing the Mississippi into Memphis, the rain stopped by I could feel my energy ebbing.  We drove north into Kentucky and camped in a state park near Mammoth Caves.  I still felt so good that I took a long evening walk to the restrooms to enjoy the luxury of hot water and flush toilets.  David was a saint and moved the tent after we'd set it up because the smell of a campfire started to bother me.  I wanted to take a hike the next morning, but just took the short, 1/4 mile walk down to the cave entrance from the visitors center.  The way back was a steep uphill, and I amazed myself by keeping up a good pace and not feeling winded..

 I was determined to maintain my gains when we got home the next evening.  The air was cool and the humidity unusually low for Ohio summers.  I inhaled the smell of oaks and maples and pines and fresh cut grass with sheer delight.   But my body was less thrilled.  II could tell by the way I felt as soon as I got into the house.

I tried to be careful, wearing my respirator in the house "just in case".  Yet by the end of my 2nd day back, I was starting to get fatigue, and by the end of a week, I was noticing the return of respiratory, neurological, cognitive, and endocrine symptoms.

I wrote out a list of the symptoms that returned.  They are:

  • headache behind left eye
  • moody, irritated
  • increased stress hormones and lowered ADH  (need to pee often and urgently)
  • unable to fall asleep
  • unable to stay asleep
  • restless legs and mild cramping
  • mild bloating or feeling of too much fullness after eating
  • stronger need to eat with less ability to wait
  • no desire to do anything physical
  • pain in soles of feet and the prelude to having trouble standing
  • more fatigue
  • bit of nasal/sinus congestion

I am now at a place where I can feel when the CIRS response flares.  As if the inflammatory cytokines are coursing through my bloodstream and into my brain.  And they probably are.  

I had my heart set on Santa Fe as a place to relocate.  I visually loved the city and the surrounding landscape.  But after 'camping' at the Hilton our first night in town, I got so sick that I really couldn't enjoy doing much in Santa Fe.  It rained every night we were there, as August is their 'monsoon season.'  I don't know if not feeling good there was due to the normal 2-3 days to recover from an exposure, or from increased levels of mold in the Black Canyon forest where we camped and in the city, where many faux stucco houses with flat roofs have inadequate drainage and become mold factories during the wet season.

I know only that the next day, when we stopped at a campsite in the Manzano Mountain range after driving through pouring rain and mud, I felt fabulous and wanted to take a hike for the 1st time in 12 years!  That feeling went away when we got back into the city, I took one whiff of my friend's apartment, and knew I could not tolerate the indoor air.

The trip taught me how healthy I can be in the right environment.  I also learned that just going into stores can trigger a CIRS reaction that continues hours later.  If I don't get back into clean air soon, as I learned from doggedly sleeping in the plush bed in the Hilton, I will get worse, and the reaction can take days to get out of my system.

But where is this healthy environment?  A campsite in a national forest with composting toilets and no running water is tolerable for a few nights, but not a few months.  I've contacted people on internet lists such as Sickbuildings who have walked this path before me.  Almost all say they wasted years and lots of money looking for a safe house.  Most advise me to leave my house and all my belongings, buy a piece of land, and build a safe house.  OMG

My temporary plan -- to the extent that I have a plan -- is to do a bit more camping someplace warming than Ohio.  I'm not thrilled at the prospect of investing in an RV, nor am I thrilled at the prospect of heating my shower water in a kettle and carrying my food around in coolers.  But I trust that the solution, for the time being, will come to me at the right time.

Now is not the right time, although I'm fading here in Ohio.  I have to harness my energy to get things done so that I can leave without abandoning obligations. This weekend I had a yard sale.  This week I will get some medical tests done.  I'll spend time doing research on campsites with running water and showers and not too far from organic food supplies.  I also have to look for a new car, since the carpeting in mine has a musty odor  and I now drive it with all the windows open.

The good thing is that my body has spoken loudly and clearly.  It's telling me what it wants -- clean air, far from pollution of cars and buildings with all their chemicals, moderate to low humidity.  My job now is to find the courage to give it that gift for several months in order to break the vicious cycle of inflammatory reactions and let my system settle into a new set point.  I'm excited to see where that point might be.

People on the internet have been great support.  We've had an active discussion about camping as an intermediate step in the healing process from CIRS on the sickbuildings yahoo list.  The locationseffect site   has provided interesting information, and various friends have chimed in with helpful suggestions.

If you know of a temperate climate, not desert, not humid, where I can live outdoors much of the winter, and have organic food accessible, please let me known.  I'm even open to 'renting' someone's back yard!