The Cruise

The election didn't go the way that I was hoping but did go the way that I expected.  Our fragile democracy continues on--only because the big bully got his way and won.  The changes that are coming will hurt many of the people who voted for the president-elect, but it will take time for that recognition to kick in.  Laughter is my medicine; watching the Daily Show's commentary on YouTube has helped me to keep moving on.  

The cruise was a great success.  My mother loved every part of it, and we enjoyed being able to share that time with her.  

Sunrise

Mom and the monkeys

Piranha pedicure in Costa Maya

Cozumel port

Roatan,Honduras wildlife refuge

Bicycle Shuttle, Cozumel port

Harvest Caye

We are back to a Wisconsin gray November.  We've already completed some projects to get the house ready to sell in the spring.  We also have started sorting through what we will be taking to Colorado after we move.  We won't do any serious home searching until after our current one is sold. 

The Weather Outside is Frightful

A friend of mine asked me this week if I was getting tired of hiking the same old trails in my area.  I don't really get tired of hiking Ice Age Trail segments.  As the weather and seasons change, so does the trail.  There are always new things to see and experience on the same paths through the woods or prairie. 

Having said that, there are things that get in the way of my enjoyment of local trails.  Today, it was the weather. We've had a stretch of very cold weather, resulting in frozen ground.  When it started raining today at 33 degrees, the rain immediately froze when it hit the colder ground. By the end of today's walk, Everything was wet, slippery, and frozen at the same time.  Not much fun.

Yesterday was Muscle Clinic Day.  Except for a couple of years when Julia volunteered to take my place, I've accompanied my son Justin through this annual gauntlet of health care providers and tests since he's been about four. 

In the morning, he had a pulmonary function test, spine x-ray, echo cardiogram, and vein-poking (blood tests).  In the afternoon, we saw multiple specialists in the areas of pulmonary, physiatry, cardiology, orthopedics, neurology, neuropsychology, occupational therapy, physical therapy, nutrition, education, respiratory therapy, social work and power wheelchairs.  Whew, it was a long day for everyone. 

In general, Justin stays in a room, and the doctors individually come to him. In theory, it's a great idea.  In practice, it sometimes doesn't work that way.  We sat alone for an hour at one point because one doctor didn't tell the next doctor that the room was available.  They all assumed that Justin was busy. At another point, there were at least six different specialists in the room while a tech took an EKG and installed a Holter (heart) monitor).  It was a little bit crazy, and we were relieved to be done. 

You might wonder why Justin needs all of these services.  There are times I wonder why also.  There is no cure for Duchenne's muscular dystrophy.  The only effective treatment is a high daily dose of prednisone or deflazacort which delays the progression of the disease, which is a breakdown of all muscle tissue.  Dystrophin is the glue that holds muscle fibers together, and his body doesn't produce dystrophin, due to a genetic deletion or error.  This adversely affects just about every major system in your body, which is why he sees all of those specialists.

There have been drugs and gene therapies which offered promise of a cure or partial cure, but none of these have panned out.  So Justin takes it day by day and mostly does his part to optimize a difficult but still rewarding life. He maintained his grade point last semester and will be back at college again in another couple of weeks.

If Justin does well with math and science requirements this spring, he plans to apply for a disabled-friendly summer school course that takes place in Yellowstone National Park.  There are a lot of hurdles to clear, but there is a path forward, as they say.  The first step is to successfully complete his coursework.  

Some Good Days

We’ve had splendid summer weather during the past week:  sunny days in the 70’s and overnight around 50.  Justin is home for a couple of weeks. He seems to be doing much better now.  He earned A’s in both of his summer courses, did his homework on time and kept to a good sleeping schedule.  In fact, he seems like a whole new person.

We had a nice family campfire on the hill last night.  Allie’s magic Iphone camera filters turned Justin into a hipster.  Justin starts his second year of college after Labor Day. I think he has a better understanding of the demands of college and taking a more active role in managing his disability.

Allie finished her summer internship, along with an interview for a three year corporate rotation. She will help me out caregiving for Justin for the next week and then return to Milwaukee for her last semester of college before graduating in December.  We’ve had time to do some hiking also.

Next week is full of checking off “to do” lists before taking off in the Brew Hut the following week.  I know that Callie is ready to go.  Me too.

Overnight at Lake Kegonsa State Park

After our trip to Point Beach State Forest, I finished up the converter.  You know how you get to the end of a project and have pieces left over? Well, that isn’t a new occurrence for me.  It turned out that the main shore power cord needed a wire clamp to hold everything in place.  It would have been better to install that before everything was wired into place.

So there was some disassembly and then some reassembly.  Later,  the converter needed side shims to close a gap and to provide more support for attaching the converter box to the interior frame of the  Brew Hut.  I finished everything on Wednesday.  On Thursday, I took the Brew Hut in for the final summer upgrade:  new tires.

When I originally purchased this Scamp trailer, the owner told me that the battery and the tires were new The old battery was dead, and the tires were bald.  However, he also admitted that he bought the cheapest replacements that he could find at the local farm supply store.   I immediately replaced the battery.  After traveling to Arizona last fall and to Texas this spring, I didn’t trust the cheap tires for another long trip.

Based upon several recommendations at the Fiberglass RV forum, I ordered three Carlisle Radials.  The existing spare tire was the original (stamped 2000), so it was time for that to be replaced also.  After the tires were balanced and installed on the Brew Hut, I was off to Lake Kegonsa State Park for a quick overnight trip.

On a Thursday night, there were plenty of campsites available.  The sites are nicely spaced and wooded.  There are about 100 campsites; however, I saw only a few that would be good for solar power. Since I was checking out my electrical system, I opted for an electric site.

After a long hike on grassy trails at the edge of the woods, Callie and I watched the Packers game on my little-used television.  Well, Callie mostly watched me watch the Packer game.

Everything electrical seems to be working, and the new tires have set my mind at ease. On Friday, we moved Justin’s things to his new dorm room and moved Justin back home for a couple of weeks of relaxation (for him, not me).

During the next couple of weeks, I’m on caregiver duty.

After Justin starts college, I’m heading southeast in the Brew Hut, hoping for a quiet hurricane season.  Julia plans to join me again closer to our destination.  If all goes well, we will enjoy some time in a new place:  the Outer Banks of North Carolina.

Blog’s Pause (Paws) Button

Earlier this week, I celebrated my 58th birthday.  Justin and I slept in until Julia and Allie drove back on the day after  their cross-country ski race in Michigan’s Upper Peninsula.  Allie finished second in her age group, and Julia was tenth in her age group.  I’m sworn to secrecy regarding the number of people in their age groups, but Allie came home with a big medal.

Upon arriving  home, Julia made her best cake ever: a  three layer chocolate and peanut butter birthday cake.

We ate a birthday dinner of meat and potato pasties, purchased from a bakery in Iron Mountain, Michigan.

We are in the final stretch for getting Justin’s caregivers in place, doctors’ appointments, durable medical equipment updates, and adult children back to school.  In the event that everything works out, confirmation will be evidenced by no blog posts for a few weeks.  I’m hoping that my next post will detail new travels, instead of  an explanation for why things didn’t work out.  There are a lot of moving pieces at this point.

Callie is in charge of the blog while I’m off-line.

Countdown at 5 days

Wisconsin doesn’t win many firsts, but we were apparently the first state in the nation in rainfall over the last two weeks with all of the usual consequences that go along with that. An elderly man in the Madison area was swept away by flood waters from his car into a culvert and drowned.  Milwaukee released 296 million gallons of raw sewage into local rivers and Lake Michigan so that the effluent didn’t back up into people’s basements.  We have had plenty of heat to go along with the rain which has meant high humidity and a healthy crop of mosquitoes.


Closer to home, I moved Justin back into the dorms for the fall semester on Thursday.  He was ready to go back to leading life without parents nagging him, and we were ready to stop nagging him.  Classes start next week.  I talked to him last night on the phone, and it sounded like he was making new friends and settling into dorm life.

Allie is still in Greece, vacationing with her Turkish boyfriend. It sounds like they are having a great time, living on a meager budget but enjoying the street food and beaches. My last “to do” task will be picking her up at the Chicago airport late Tuesday night and driving to her Milwaukee apartment where she will start the fall semester one day late on Wednesday.  I will try to get some sleep on Wednesday before taking off west in the Brew Hut.

Most of my preparation work for the trip west is done.  I’ve been picking up little odds and ends at the last-minute.  The square plate at the bottom of the Brew Hut’s trailer tongue’s jack has seemed a little shaky to me, so Amazon shipped me an 8 dollar Camco cone stand which is supposed to be more stable and multi-functional.  We’ll see.  The plate can be re-installed if the plastic thing doesn’t work out. If it works, I can eliminate the cinder block that I’ve been carrying around as a jack stand.

I also restocked green (raw) coffee beans for the trip.  Friday afternoon was spent roasting so that Julia can have fresh coffee while I’m gone.  Most people don’t know that you can freeze (colder the better) freshly roasted coffee in small one pound freezer bags, and then use one bag at a time (defrosted and staying at room temperature), and the quality is excellent.  Blind taste tests don’t lie. What you don’t want to do is take frozen coffee back and forth out of the freezer allowing it to partially defrost or be exposed to humidity. It should go without saying that the coffee has to be fresh-roasted.  Putting stale coffee into the freezer doesn’t preserve anything.   For myself, I plan on roasting coffee in the Brew Hut while traveling.  Still working out those details.

Other than that, I’ve been stocking the kitchen with canned goods (black beans, coconut cream) and spices so that I can make my staple curries and dirty beans with rice.

Recent reports from the Badlands are that it may be muddy with reduced access to the location that I hoped to camp, but weather changes.  We’ll see how it goes.  There will be a back-up plan.

Preparation and Planning

“Plans made in Jello.”  That’s a full-time nomad’s cliché with meanings at multiple levels.  I remember a minister with a similar sermon:  “Man plans, and God laughs.” Things outside our control often influence the best laid plans.


That’s tough for me, as someone with plans, back-up plans, and back-up to back-up plans. My mentor at the law firm liked to tell me in relationship to the practice of law:  Worry about the things that you can control; let go of the things you can’t control, and practice the skill of learning the difference between the two.  I’ve always been one to try to push more into that first category than most people would do.  Planning and organization do tend to increase the limited ability to control variables.

With that in mind, and two weeks before my scheduled departure out west, I’ve been tightening up the specifics of the plan.  As a general plan, I’m going to drive to the South Dakota Badlands, dry-camp without electrical hookups for awhile at a well-reviewed location, and then make my way over to the Black Hills and Spearfish, where I’ll camp for another week.  I have a few possible locations in mind–mostly dry camping.

From there, my plans are highly variable on the weather.  I’d like to spend some time in the Big Horn mountains of Wyoming and meander across Wyoming to northern Utah. The latter part of September can bring snow and freezing temperatures at higher elevations, so I might have to head lower and south before too long. I will play it by ear, but I need to be in Las Vegas in mid-October to pick up Julia for her portion of the trip.

In preparation, I’ve ordered Benchmark maps for the states I’ve mentioned above, and I’ve been researching google maps, campendium, freecampsites.net, public lands maps, and reviews of different places to camp, hike, and drive.

I bought a small inverter to charge my laptop and other small electronic devices not powered by 12 volts.  It has enough capacity to run the small tv also in case the world suddenly changes, and I need to watch the news or something.  My friend Dean showed me how to repack the wheel bearings with grease on the Brew Hut, so that needed task has been checked off the list. He also checked the brakes for me, which provides peace of mind.  I still need to organize space in the Nissan truck and Brew Hut. Packing clothes and planning food provisioning is also still ahead.

Justin has decided not to bring Elvis the service dog to college, which is probably for the best for now. Although having a service dog at college sounds good in theory, Justin and his caregivers have enough to do without worrying about feeding, watering, and toileting Elvis.  Those tasks are mine at home but would need to be performed by someone other than Justin at school.  Justin’s caregiving hours are limited,  Also, because we live in the country, Elvis has developed a bad habit of barking (for a service dog, not a watch dog) when there are strange noises or strangers (rare).  In a dorm setting, that is a common occurrence and a potential behavior problem.  Julia has asked me to take Elvis along, so that Elvis is not alone in the house all day while she is at work.

Taking Elvis on the trip west has pros and cons, but he is good company so we will make it work.  I know that he would rather be on an adventure rather than left at home. We both have worked hard during the last six years, so it’s only fair that Elvis is rewarded also for his own gray hairs. When we return home before Thanksgiving Break and then during semester break, we will both be put back to work for Justin.