Chapter 5 - Waking up from pain's shadow

 

Our last entry had us heading back north from a vacation in the American Southwest way back in March. So what happened between then and now – early December 2022?

To put it simply – a lot!  BUT there was a big shadow hanging low that needs to be addressed before moving on to the fun stuff.  I had been pushing against feeling depressed for some time likely going back to being critically ill in January of 2020.  The Covid pandemic and the disruptions of life associated with it both physically and socially didn’t help at all.  In the end the factor I couldn’t seem to mentally overcome without help was becoming disabled. 

I will try to lead through the journey with a reminder that back in 2005 or thereabouts I had a benign tumor grow quit large in my lower spine.  The good news was that it was removed without obvious damage to the nerves and my very real fear of being paralyzed did not come to be.  I have had residual pain in my legs from the nerves that were likely damaged but I learned to live with it and have even walked to the bottom of the Grand Canyon since that time.  Physically what has been happening since the original surgery is that my spinal canal has been continuing to “heal” around the original surgical site and has basically closed off to the point where the spinal nerves were once again being impinged upon. If you follow the photo essay you will note that as time moved forward, really increasing dramatically about the time of our trip to the southwest (when I took a “bucket list” steam train ride to the south rim of the Grand Canyon but ended up being unable to do much except hobble to a bench and sit and look out at some of the most amazing scenery in the world before I hobbled back to wait for the train to return me to where Clarice, Jarvis and our Airstream waited), I went from using walking poles to assist me walking to NEEDING to use walking poles, to being able to use walking poles rather than a walker only when I had recently had a steroid injection into my spine to being only about to walk less than a block with a walker.

Steam train rides are special to me - For years I wanted to ride the 

Grand Canyon Railway from Williams to the South Rim

This was just before I gave up enjoying much of the rim walk and 

hobbled back to the train depot to wait for the return ride

I tried to add some levity by saying that "old people have walkers but young people have broomsticks" with Erin helping by making a "Nimbus 2000" logo for the walker. 

Trying to get out and about while visiting the San Juan Islands

I started seeking treatment for my back in March or April and finally was able to go to the spine clinic in Seattle in April.  The physician and I agreed to try non-surgical approached (drugs and physical therapy) which in the long run did not work.  I was only able to get short term relief with steroid injections which worked very well but only for about a month at a time.  It wasn’t until September 29^th that I was able to get approved for and get an appointment for an outpatient laminectomy where bone fragments and sections were removed from my back in order to allow the nerves to have room to function as they should.  Initially there was a LOT of nerve/leg pain as the nerves and muscles that had been malfunctioning for years (?) found themselves again having normal impulses.  The very very good news is that while I had hoped to go back to my baseline function (some ongoing chronic pain), my pain is 95% gone!  As of this writing I am still on a 10# weight lifting limit and am in the early stages of physical therapy to retrain my muscle habits to protect my back and to use healthy pathways rather than the survival pathways that had developed over time. The first comment Clarice made was that she hadn’t seen me stand up straight in years and I immediately noticed that I didn’t feel like I was dragging my lower legs along when I walked.

So as I started to say a couple of paragraphs ago, being disabled (requiring a walker to walk anywhere , even around the house) and feeling like I wasn’t getting anywhere with a treatment led me to send this rather desperate email to my PCP:

June 30 Dr.:  Please consider ordering an antidepressant for me.  I am finding that after a day of pain anytime I walk and feeling like there is no hope for it to end, I go to bed exhausted and depressed most nights.  I hate to say it but I feel like I am getting passed from specialist to specialist with no one willing to say, “live with it – we have nothing to offer you”.  At this point I am waiting for an EMG (earliest appointment is August) and then ????  Thanks Norman

My PCP responded very quickly and ordered me medication and made sure his staff followed up with me.  The medication was very helpful and now that my pain is gone I have halved my dose planning to stop once the winter solstice is a way behind us (It has also been suggested that I have a longstanding touch of SAD (Seasonal Affective Disorder) and so I don’t want to push my luck – having energy and a positive outlook is a nice thing after the darkness.  I add this section not to ask for sympathy but to remind readers that help is available but sometimes we need to ask for it.

BUT YES!  We did have some good times too!

One of our big goals was to take Hyacinth our Albin 25 micro trawler up the Inside Passage come early summer.  We have made this trip before in a 25 ft boat and of course to our wonderful adventure north in Salish Aire when we lived on her. The boat now has a canvas cover, new electronics, new heating and cooking equipment, new refrigeration, cleaned and checked fuel and engine systems, new upper deck paint, and is cleaned and buffed to Clarice’s satisfaction. 

Sanding the deck before final painting to make the surface non-skid

Boats need shiny props!

Despite all of that work our early trial runs in the boat made it very very clear that staying out for an extended run in very remote waters was really not a good option when we had to transport a walker everywhere with us and knowing that I likely would not be able to help reboard myself if I fell into the water nor could I rescue Clarice if she fell overboard.  Finally sitting while captaining the boat for more than a couple of hours at a time made the leg nerve pain much worse.  One night out of frustration I was having a pity party and decided that really as much as I wanted to enjoy the ride of going north again, I really really wanted to revisit friends we had made along the way especially during our winter stay in Sitka.  I looked at our long ignored mileage plan and realized that we could fly there for a week for almost nothing and asked our priest friend at the Sitka St. Peter by the Sea Episcopal Church if she could help us find an affordable place to stay for a week.  Rev. Julie and Lloyd kindly took us into their home and provided us a chance to recall why we had fallen in love with their town and the people in it if only for a week.  So for the last week of May we played in lovely weather on Baranof Island which really helped my mood and helped me keep my strength up as I walked with my poles (I had “saved” one of my 3 annual back injection opportunities for just before the trip) everywhere I could. 

Taking a boat ride with Rev. Julie and Lloyd

Sitka Sound

Blue Lake

Sitka Cross Trail passing through a muskeg section

Julie and Lloyd's boat

Mount Edgecomb 

Flying out over Baranof Island

One fun thing that has come about has been our periodic Boondockers.com visitors.  Boondockers.com is an on-line “club” where RV owners make space available on their property for other RV owners to stay and virtually no cost.  When private and public camping sites can run from $40 -$75 per night, this system is really helpful for those of us who try to travel on the cheap. We have yet to stay at a Boondockers.com site but to get a free membership we decided to offer our little gravel driveway pad as a listing thinking that not a lot of folks would be interested in stopping here.  Instead “Lacey Rest”, as we are known, has been quite popular with people who need a place to recharge (emotionally and literally as we offer a power outlet to plug in to) for a day or two while heading north or south along interstate 5.  The unexpected benefit is that while I am bound by disability to be home, I can get to visit with new people with similar interests who come to us.

Our first visitor from Boondockers.com was a photography student living in her van

We took a trip to Mt Rainier with our Boondockers guest where she practiced her photography skills

Our first (of several) Canadian guests - this couple from Quebec.

Another challenge has been my mother’s health who turned 95 this year.  My mother with her very strong mind had a physical event of some kind (heart most likely) that has resulted in fairly rapid loss of first short-term memories and more recently long-term memories.  This does not seem to be to classic confusion of dementia but it is very destressing for all of us especially her as she is very aware of her losses.  We live only a few minutes away from where she lives fairly independently in her apartment (she has to walk down to get meals provided for her) but requires daily checking to make sure she has taken her medications and not gotten lost in her small world.  Even with family and friends helping out this has become a burden from which Clarice and I need to rest periodically so we take camping and boating outings when we can and make sure her needs are covered while we are gone.  I especially feel for Clarice who has had to deal with her mentally and physically challenged husband during all of this time as well.

Mom gets joy from Jarvis visiting in her apartment

One of our outings was to take Hyacinth to the San Juan Islands while our daughter Erin flew out for a week to care for her grandmother.  The trip was a great success  but ended up getting cut short when I was given a chance to visit the neurosurgeon in two days or two months.  We literally made a U-turn in the water and were able to make it to the appointment where the decision was made to proceed with surgery.

On the dock at Blake Island State Park across from Seattle

Seattle and Mt Rainier from Blake Island

Clarice with her "I'm on MY boat smile"

Jarvis is getting his sea legs again after spending much of his life on boats

Jemma Cove State Park north of Olympia

Docked in Olympia

Also before surgery (BS) we were able to take Hyacinth the grand-daughter camping with us a couple of times including once with Michelle our sort-of-God-grand-daughter.  These outing in our Airstream serve to lift our spirits wonderfully and help us appreciate the kids while we can.

Hyacinth playing with Russian stacking dolls from Sitka

Helping clean up Jarvis' paw prints

Climbing the biggest rock she can find in Mt Rainier National Park

Michell, Jarvis and Hyacinth deciding if they are ready to wake up after sleeping in the Airstream

"This little window is just for me!"

Grandma and Hyacinth

Fall leaves and fall colored hair.

After surgery (AS) we were able to keep our previously made plans to visit our daughter and her family in Ontario Canada where the fall colors were going strong.  This was a wonderful week long visit and included a tour of a long retired Niagara Falls power plant which includes access to the bottom of the falls through the no longer used outlet tunnel that used to return water from the turbines to the river.  Apparently the plant had been kept in standby condition until fairly recently when it was decided that the combination of its generators requiring a complete overhaul from their designed 48 V 50 hz (used in another era of time) and the water it would take from more efficient generating facilities when Ontario is only allocated a certain percentage of the river flow per international agreement did not justify the rebuild so it was turned over to the Ontario Parks in a condition that made conversion to a tourist site very feasible.

One of the first photos with me standing up straight with 

Erin and Paul in Ontario

Niagara Falls from the hydroelectric tunnel

American Falls and Rainbow Bridge

Walking back up the tunnel

We are both finding more energy to get re-involved with volunteer projects, church projects, and hobbies with Clarice baking and sewing up-a-storm while me joining my ham radio club in things like helping out with a Scout night hike event (helped out by other sort-of-God grand-daughter Ash who was a Godsend to me as the event ran into the early morning hours long after my AS endurance gave out as she practiced her ham radio skills and skittered about helping keep scouts from getting lost in the dark).  I get stronger daily and we both look forward to my lifting and activity restrictions getting lifted so that we can get back to our Life’s Adventures!

Just enjoying a warm fire at home

We continue to be very involved helping keep this trailer functioning to provide showers to the homeless once a week

Clarice made pillows to match the new nursery curtains at Church

I was able to take short turns on the pressure washing gun (brother-in-law Darrell did most of the work) to clean the siding on our church

Clarice on the church roof washing windows.

Jarvis taking a bike trailer ride (yes, its a smile not a growl)

Clarice landscaping the yard

Second coat of stain on the back fence after pressure washing 

Visiting Mt Rainier with Darrell

Darrell learned that the poles that Margie gifted him really increased how far he could walk

Narada falls Mt Rainier National Park

 

 

Chapter 4 – Heading to the Southwest in Salish Airstream

We ended Chapter 3 with the hope that we could get out of Lacey immediately after the Seattle Boat Show but we didn’t get underway until March 1^st as several issues had to be addressed.

The first problem was that I was having severe nerve pain shooting down both legs which was rapidly escalating to the point I was considering using a walker for fear of falling.  I would be fine walking along and then, zing zing zing and I was barely able to stand at times.  Initially I responded well to medication but it wasn’t long before I called my physician back and asked that he arrange for an MRI of my back as this pain was awfully similar to the pain I had when I had a spinal tumor clear back in 2006.  He agreed and after looking at the results sent me a short email, “….we have a lot to talk about.”  After agreeing during a phone visit that a non-surgical approach was worth trying he sent me to the spine clinic where it was recommended that I have an injection of steroid solution into my back.  Initially I was told to expect to wait a month before an appointment was available as the procedure is done in an OR setting but when I indicated I was willing to travel to Seattle if I could get in sooner I was told it could be done 3 days hence.  So Monday morning February 28^th we fought our way through record rainfall and the resulting rush hour traffic jams to get into Seattle for the first opening of the day.  The injection was pretty uncomfortable but in retrospect the pain followed the same nerve paths that I had been having the zings along so it seemed those very tender nerves didn’t like fluid being injected at their roots.  I was told IF the injection was a success it might take anywhere from a couple of days to a couple of weeks to feel the difference.  I’m pleased to say that within 24 hours most of the pain was gone (at least for now)! 

The other issue that needed to be addressed was my mother, nearing her 95^th birthday, was falling and injuring herself regularly in her independent living apartment.  On one hand she is very competent and is NOT ready to give up her independence even though she admitted to being frightened.  For a while we were able to use an Alexa devices as a safety stop since she could call for family members while lying on the floor as long as she was alert.  I helped her purchase a climbing helmet so she was less likely to get knocked out but she didn’t like how she looked in it and was too stubborn (“independent” in her words) to wear it when she was alone.  We arranged with her doctor to have home physical therapy but they (like us) kept telling her to use her walker everywhere in her room (and to move some furniture to make more space) both of which didn’t fit her lifestyle choices.  In the end it was her friends who convinced her she needed to be where 24 hour help could be summoned if need be.  The good news was her very good friend had previously moved to an independent apartment very near our home and encouraged her to move there and since the facility also has assisted living rooms it has staff available 24/7.  Her new apartment is smaller but after getting rid of a love seat and extra bed she has made everything fit and still has room to get around with her walker.  When she has fallen she has been able to get help getting back up and no one tries to force her to go to the emergency room so she is much more willing to ask for assistance.  The best thing is that, whereas the previous apartment complex had yet to open their dining room after 2 years of Covid closure, she now goes to the dining room and interacts with friends twice a day.  She is also closer to children and grand-children so she has more visitors.  The end result is she sounds much happier and more alert when we talk to her.  We also feel good about leaving her while we travel.

Mom didn't like the helmet but she already had 2 black eyes so it seemed to ME like a good idea.

(The star was to help her identify the front with her poor vision.)

We packed her old apartment over a 2 week period and never believed it would all fit the new place.

The movers were very nice about finding an open place on the floor for everything before they waved goodbye.

Everyone pitched in and much to our amazement (everyone's amazement 

except Mom) it all fits.

Mom celebrated her 95th birthday shortly after we left.

Her niece sent 95 carnations and Mom was the "talk of the town" when she 

showed them off to the other residents.

To try and stay as active as possible during the wet and cold northwest winter Clarice and I have increased our activities with our church and have gotten involved with a local non-profit that owns a trailer with 5 shower stalls in it so every Saturday the homeless folk in the area can get a hot shower, get some clean clothing and a hot lunch.  We thought our involvement would be helping out maybe once a month but when the leadership learned of my mechanical skills and familiarity with working with mental health issues as well as Clarice’s organizational skills we have become significant members of the team.  I have done some major redesigns on how the trailer is powered and setup is done so that we have reduced the setup and takedown time significantly.  The next step is helping arrange a new box truck that was purchased after we left so that loading and unloading is a much more organized activity.

The shower trailer

I convinced the leadership that if we could operate the trailer

on small generators run by propane it would be much simpler and 

safer in the long run.  I had to make this propane adapter from scratch in order to

make the plan work.

Final testing of the generators on our trailer before using them on the shower trailer.

We also wanted to leave Hyacinth the boat as protected as possible while we were gone so Clarice worked madly to get the cockpit cover sewn as much as possible.

The garage was turned into a sewing room to accommodate the large

pieces of fabric

Top and back window are in place, starting the side windows.

We did take one short trip in the trailer which was notable as due to our son’s nanny having a possible Covid exposure he asked us to care for the Flaming Haired Grand-Daughter for several days which happened to overlap our planned outing.  We took her to the Oregon coast and had exceptional weather for the PNW for that time of year and she took to camping like a proverbial duck to water. (Actually the biggest challenge was to keep her from running straight into the Pacific Ocean just like a newly hatched duckling!)  She and Jarvis get along like a pair of siblings; he likes her to pet him but its not OK to rearrange his food while he is eating and they both compete for time on my lap while I have my morning coffee.

Very tame deer impressing H.  (Jarvis, with his poor vision, hasn't seen them yet).

Wagon ride up the sand dune.

Good thing she brought boots!

A lap full of dog and grandchild while enjoying my morning coffee in the trailer.

We actually had sun and warm weather at the Oregon Coast in February!

Bryan and Amy came to join us the last couple days.

H and Amy watching the waves.

With things finally settled on the home front we handed off care of the house to our friends who house sit for us and headed south on March 1^st.  The first thing I noticed with my leg pain well controlled was my muscles were very weak from lack of exercise so we have been trying to walk or ride our bikes at least daily.  The second thing I realized was that the cloud of depression I have felt since I was sick back in January of 2020 is finally lifting.

We first headed to our son’s house in Beaverton Oregon to spend a bit of time with his family then we headed to the southern part of the state.  Our goal was to cross the Siskiyou Mountains in one jump as they are the highest point on I-5 and can be messy this time of year.  We arranged to stay with a Harvest Host winery and were told to camp on the bluff overlooking a river at the back of the vineyard where we watched the winery’s flock of sheep mow the weeds between the rows of grapes. Next we headed over the mountains to an organic farm in the town of corning where their specialty was growing luffas and lavender.  We spent the next night at a campground on a reservoir outside of Bakersfield before we headed over the Sierras to boondock outside of Baker California.

Our first real goal (other than to find elusive sunshine and warmth) was to go to one of our very favorite campgrounds in Valley of Fire State Park between Las Vegas and Lake Mead.  We wanted to see the Cirque du Solei show of O while we were in the area.  We had seen it many years ago and wanted to enjoy it again.  We found a nice campground on Lake Mead that was close enough to downtown Las Vegas that we felt comfortable leaving Jarvis in the trailer while we watched the performance.   

Valley of Fire SP Nevada

Valley of Fire SP Nevada

Trying to regain strength in my legs at Valley of Fire SP Nevada

Valley of Fire SP Nevada

Valley of Fire SP Nevada

Valley of Fire SP Nevada

Mountain sheep Valley of Fire SP Nevada

Next we visited friends in the Tucson area and stayed for the full allowed 7 days at Gilbert Ray County Park where we charged up energy and batteries before moving on.  While we were there we took day trips to see sights in the area including Mt. Lemmon which is considered to be a sky island in the desert.  At 9000+ ft of elevation the mountain’s vegetation and animals represent a much different climate zone than in the desert below.  At the top the ski area was still melting out from winter snows. I also visited the Titan Missile museum where the only intact Titan missile silo is retained after it was made to be visibly inert to passing satellites to comply with the START agreements with Russia.  I also visited one of the huge open pit copper mines that dot the Arizona landscape.

Looking through the window at the 10 ft diameter missile from inside of the silo.

Looking down through the viewing window at the top of the silo. 

(The silo cap has been locked at 1/2 open for satellite viewing and the hole in the left side of the reentry vehicle allows confirmation that there is no warhead loaded in it.)

Ski area at the top of Mount Lemmon.

Scenery going up Mt Lemmon.

Scenery going up Mt Lemmon.

Looking down at Tucson from Mt Lemmon.

Scenery going up Mt Lemmon.

Our goal this trip was to explore New Mexico so we moved to our next stop which was the ghost town of Shakespeare.  We both were expecting pretty much of a tourist trap but instead found the “real thing” where the family who had long owned the property and used it for a cattle ranch were trying to preserve what was left of the town and it’s history.

Original adobe brick building, Shakespeare Ghost Town, Lordsburg NM.

Rebuilt blacksmith shop Shakespeare Ghost Town, Lordsburg NM.

(Still used on occasion when original iron work is needed.)

My “bucket list” has long included White Sands National Park and Carlsbad Caverns National Park.  They are both located in the far south part of New Mexico where the general scenery reminded us of West Texas (boooorrrrinng).  White Sands on the other hand was pretty impressive once we got off the highway and into the dunes area.  The gypsum sand is held in place by the very high water table so while we expected it to run through our fingers instead it is moist and clumps.  Lots of kids were having a ball exploring the huge sandbox and sliding down on sleds they had rented from the visitor center (along with their parents).  Jarvis just couldn’t quite figure it out but seemed to appreciate that it was soft to walk on.  Carlsbad Caverns were just plain amazing.  We walked about 3 miles on the tourist trails and felt like we had seen enough to really appreciate why they are an international heritage site.  So going to the ends of New Mexico to see these places (along with Guadalupe Mountains National Park in the corner of Texas we passed through) was well worth our effort.

White Sands National Park with Sierra Blanca Mountain in the distance

White Sands National Park

Jarvis was quite intrigued with the gypsum sand

White Sands National Park visitor center rents sleds for sliding on the dunes.

The loop road through the dunes at White Sands National Park is plowed frequently.

We have now turned northwest and the New Mexico scenery we remembered from when we passed through the state during the worst of the Covid epidemic is starting to show itself.  Yesterday we stayed in the middle of a massive lava flow and now we are in an area of fascinating sand stone formations and more lava flows.  Our next goal is to head to Navajo lands but we are currently hunkered down with very high winds, sun, rain, sleet and snow today.  This is certainly an interesting place that changes scenery, weather and cultures from one moment to the next.

Valley of Fires  NM

Valley of Fires  NM

Valley of Fires  NM

El Malpais National Monument NM

El Malpais National Monument NM

El Malpais National Monument NM

El Malpais National Monument NM

El Malpais National Monument NM

El Malpais National Monument NM

El Malpais National Monument NM

Parting shots:

Boron California where the 20 Mule Teams ended their run from Death Valley.

Active Borax mine Boron California

Borax refinery and mine Boron California

Ibex beside the road near New Mexico Texas border. Imported from Iran and allowed to go wild.

Boondocking near Baker California

Dust storm crossing from Arizona to New Mexico

Boondocking after visiting Carlsbad Caverns

Our route so far

New Mexico sunset.