I Put on Pants – A Spoonie Award

I don’t mean to brag, but I am totally rockin this day. Not only did I get out of bed, but I put. on. pants! Yesterday was what could euphemistically be called a “low spoons” day. In all honesty, it was, in fact, a total, complete train wreck. Including meltdowns and tantrums. Now I’d like to tell you that it was a visiting grandchild that threw said tantrum, but, alas, it was none other than me. I wish I could tell you that this is an exceedingly rare event but no, it’s rather too common for comfort and I’m considering just penciling it into my planner for like “Monday Meltdown” or “Tuesday Tantrum”. All it takes is a trip to the hardware store where we did not find what we wanted, well OK we did but not at a price we were willing to pay, and it’s a new sump pump because we’re (read that Superhubs) not sure if the one we have works and we’re supposed to get five inches of rain over the next three days.

Then, just one innocuous comment, a casual dismissal of something I have taken it into my head matters more than a cure for cancer. Something that matters not one jot, something stupid like trying to follow Superhubs hand signals as he guides me through parking the car in the garage around the gargantuan garbage can and the stupid cardboard boxes that are STILL HERE from our move three months ago. I mean really? I have to negotiate my way around the ancient box springs that we had to move out of the house and the garage is as far as it got because we have no idea how to get rid of it. Because it’s not that I have depth perception issues or blurry vision from lack of anything remotely resembling a tear film in my eyes, and you know, I have to do EVERYTHING around here. And no don’t you dare offer to park it for me! Boom! BAM! SOCKeroooo! It’s like a bloody Batman Show (the real one with Adam West). Yes, a sixty-something great grandmother sat in the middle of the floor blubbering like an over stimulated two-year-old.

Fortunately, I am blessed with Superhubs who sits down beside me, holds me, makes little shushing sounds until the worst of the weeping subsides. And then asks “what hurts?” So I can sob out “EVERYTHING!” Yeah, that’s one of the worst parts of being a spoonie. Painger is a very real thing. It’s when you think you’re angry but, really, you’re just in pain.

So, in light of yesterday’s emotional train wreck, I decided to reward myself with a Spoonie Award. I’m wearing pants, and that’s a step in the right direction. Fellow Spoonies, always remember that you are amazing, strong, powerful health warriors. It’s OK to lose it once in awhile, grab your heating pad, tylenol and a cup of tea, go snuggle up. Do what you can to take care of you, this day will pass and tomorrow is another day.

Til later ~ Too low on spoons to give a fork ~JP

Witchy Wonderings — Holidays and Covid Boosters


Welcome back to the mishmash life of a couple of Spoonies navigating retirement in Bluegrass Suburbia. It’s been a month since we made the “big move” from a South Dakota RV park to a Townhouse in Central Kentucky. Our relatives say things like “well, you had a good long run.” Hey! We’re not DEAD, just retired and homeowners *insert shudder*. I admit it was the end of an era but the next chapter is just beginning.

We’re still dealing with a bit of culture shock. There are STORES and RESTAURANTS and ENTERTAINMENT, oh my. We ate lunch out every day last week. Yikes! And enjoyed every one of them. Double YIKES! OK, OK, my waistline can’t handle much more of this. Time to back off the pizza and apple pie!

I got my COVID booster shot yesterday. Once I actually got it scheduled it all went pretty smoothly. I got both booster and flu at the same time, no cost for either. I was in and out in about 30 minutes (most of which was spent filling out paperwork). My arm is pretty sore and I am slightly fatigued but over all I’m doing OK with it. My KOC (Knight of the Old Code) gets his on Monday. We decided to get them before we head up to the northern part of the state for Christmas holidays with kids, grandkids, and great-grandkids. We’ll be spending 3 days 2 nights in order to get ’round to visit the families. I am looking forward to spending a holiday with the kids for the first time in 15 years. But oh my I am exhausted just thinking about it.

With the winter holiday season in full swing, many Spoonies, myself included, suffer from lack. Lack of sunlight, lack of energy, lack of funds, lack of joy. It’s easy to get caught up in all that we can no longer do. To look at the neighbor’s perfectly decorated tree shining through a picture window and feel something less than happy. It’s been hard this year. I’m in serious spoon deficit (exhaustion) from weeks of over-extending myself with the move. I’m easily overwhelmed by the glitz and hubbub that surrounds the season. But, with a few meltdowns, and several reminders that happiness is a choice, I’m content with my evergreen swag on the entryway, my wee lemon cedar “tree,” a tiny poinsettia and cards from prior years strung as a garland. It is enough.

As I prepare to celebrate Yule, the coming of the light, the return of the sun, I remember the words of that Zen Master of Magic – Albus Dumbledore “Happiness can be found even in the darkest of times if one only remembers to turn on the light.”

The sky wears a shroud
as the Sun hides his face
beneath a cloak of grey
Where is the blue
to brighten my day
A squirrel runs along a branch
outside my kitchen window
I watch as he scurries,
his long tail twitching
and quivvering with excitement
and I smile, I laugh
today I choose happiness

Til next time ~Choose to be happy ~JP

Magikal Mundanities and Spoonie Retirement – Thunder Snow

October has been warm and mild thus far. Temps were slightly above average for this area, wonderful weather for fall. And then, there’s today. Today we have a viscious cold front blowing through bringing rapid drops in temperature, rain, and snow. Yeah, three inches so far. It’s also brought thunder. Thunder during a snow storm is rare, and given our propensity for hail storms, more than a little scary. So, here we are holed up in our battered little RV, riding out the storm … again.

On the good news front, we found a permanent home that we like, much farther east, a little farther south, much closer to the children (but not too close *wink*). We’ve taken a virtual tour, gotten an inspection, made an offer, set the closing date and now we’re just waiting to close. So, we’ll be packing up the RV for the last time and heading out to start the next adventure in a house that has no wheels. Wow, I mean WOW this is gonna be a huge change. The other good (?) news is that everything we own fits in a 5X8 U-haul trailer and the back of the Swiss Cheesemobile (honda fit) and we should be moved by the first week of November.

Today’s thunder snow reminds me so much of all this move represents. It is beautiful, rare, inconvenient, terrifying, not at all what I had planned. I am equal parts ecstatic to the point of mania and terrified to the point of blind panic. It’s a thin line between the two. I’m currently using that line as a jump rope, keeps life interesting. 😉

Ahhh well, I’m off to pack something.

Til next time ~Stay Wild Moonchild ~JP

Washing Day

Washing Day

I hung out the washing today
just like I learned in Kaikoura
where any day with sunshine
is washing day

Everything dried quickly
in the summer sun
before the air got sticky and
clouds rolled in

As I began to gather everything
to take inside for folding
I noticed, how I hold your shirts
a little longer

I fold them last, touching them
for as long as I can
before they are consigned
to closets and drawers

It reminds me that once in awhile,
in the middle of an ordinary life
love gives us a miracle
after all, it gave me you

Til next time ~Stay Wild Moonchild ~JP

Sunday Stills and Weekend Coffee Share in the July heat

Welcome fellow Spoonies and various other sentient beings! Come in, grab your favorite cuppa and let’s visit a bit with Natalie at the Weekend Coffee Share and Terri at Sunday Stills. Our Sunday Stills prompt is “angle” and I found oh so many on our recent adventures.

Last week, we visited Mountain Home, Idaho and took a mini tour of Penny Alley which is a local alleyway that has been dedicated to dozens of urban murals in this tiny rural town. According to the local brochure “in 2016 a group of local artists came together to transform a nearly 320 foot stretch of alleyway in the city’s downtown into an outdoor art gallery featuring a collage of different works of art painted on the walls of local businesses.” We spent a sunny (yeah read that HOT!!!) morning walking the alley, snapping pics, and eating outdoors.

It’s business hours so a lot of this collage is blocked but still sooo worth the look. I can totally dig the wild angles in the dream catcher. Dude!

Adventure is out there!!! LOOK at all the angles in the mural, each sun ray had it’s own design. Plus, it’s purple … and pink! 🙂

I considered cropping this shot but wanted to keep the “OMG this is the alley of actual working businesses” feel. I like the lines of the bricks through the murals and the way the angles are broken up with curves and blending of the individual pictures in the mural.

I particularly love this. Maybe it’s the quote, I am a John Muir fan, or maybe it’s the scene, or maybe it’s the style. This shot is not pixelated, the rough “texture” is intentional. Up close it rather resembles one of those photos transferred to canvas texture. However it was done the result is much in keeping with the alley-feel. I shot this from a straight-on angle with my hinney squeezed up against the far alley wall, stupid camera phone. ;-p

After a long stroll we made our way back to the car through a little craft fair. It was fun to see the offerings. We returned to our hotel and spent the rest of the afternoon at the pool, splashing, relaxing and practicing that wonderous vacation ritual of napping. So many great angles in the rock water feature.

Hope you’re staying cool in your part of the world. We’re enduring another round of record breaking heat here in the west and midwest USA. To read a bit more about Spoonies and summer, check out Magical Mundanities Episode 3 –Summer Spoons.

Til next time ~Stay Wild Moonchild ~JP

Magical Mundanities Episode 3 — Summer Spoons

Buddleia gone wild

In the early morning I step outside. The air is already heavy with heat. Summer is in full swing. Blackberries and blueberries hang gravid with sweet juice, begging for harvest. Yellow squash and bright red tomatoes peek through verdant leaves. Wild roses are faded and dry in the heat while marigolds and buddleia proliferate wildly much to the delight of the cavorting swallowtails. All the sweet abundance of Summer.

But with the sweet, comes the bitter. Sweltering heat brings fatigue, enough to crush the body and soul. Discontent and maudlin anxiety taunt me with reminders of all I can no longer do. I step outside into the heat of afternoon and see the dull haze, the bane of forest dwellers everywhere, wild fires. It is hard to breathe through the acrid smell that fills the valley. There will be no evening stroll along the river tonight.

This is deep summer for a Spoonie. Equal portions of bitter and sweet, joy and sorrow. I cannot change the heat, the fatigue, or the fires. All I can change is how I react to it. So for today, and probably tomorrow, I will stay sequestered indoors with windows closed and A/C on until the smoke passes. I will read, and write, craft, and rest. And I will be grateful for the precious, magical moments of my life. I missed so many moments, days frittered away in anger and impatience, back before I knew that life is lived in those tiny moments of grace, filled with joy and laughter, and strung carefully together into the journey of a lifetime.

In a few days we venture on to our next destination but for now it is enough to know that we are still relatively safe from the distant fires, my health will return, and the berries will make an excellent topping for shortcakes.

Abundance of blackberries

Til next time ~Stay Wild Moonchild ~JP

Magical Mundanities — Episode 2 — Spoonie Travel in a Pandemic World

Welcome fellow Spoonies and various other sentient beings to another episode of Magical Mundanities where this Spoonie seeks to find the magic in a mundane world.

After returning from a short trip to visit grandkids and wrap up pre-retirement details with the home office, we had three weeks to rest, recuperate, see doctors, repack our suitcases and pack up our tiny home for storage before heading out on the “big trip of being somewhere else.” This is the first significant road trip we’ve taken in several years.

Butterfly on a purple coneflower bids me farewell in South Dakota

We left South Dakota on a sunny day. The weather had been mostly hot and sunny for the weeks prior to our departure and we were looking forward to some cooler temps.

Spoonie travel requires some adjustments. We discovered early on that traveling by car is no less draining than travel by air, and it TAKES LONGER! Bear in mind that neither of us travels well these days, we’re out of shape. We took the drive in easy steps traversing no more than 350 miles of state highways per day. We stopped at virtually every roadside rest and touristy place along the way (aka restrooms).

Independence Rock — along the Oregon Trail — Alcova, WY

We loosely followed the Oregon Trail most of the trip and picked up fascinating tidbits about the pioneers and their perils, as well as the Eisenhower Highway Act which connected this vast country. The story goes that when Eisenhower was a young Army officer, he participated in a cross country convoy from New York to California. The trek took 62 days and Eisenhower later wrote that this was when he first envisioned a cross country highway system.

The road was long, the journey arduous although certainly not a patch on what the pioneers or post WWI travelers must have gone through. Breaks became less frequent and fatigue crushed the mind, body and soul of these two spoonies. Wyoming holds many, many hundred miles of, well, nothing. At all. I have always said though that if you LOOK for beauty, you’ll find it. Above, during a brief break at an otherwise unremarkable rest area, thistles behind a dilapidated parking lot.

Penny Wall, Mountain Home, Idaho

Finally after three days of bone crushing travel fatigue, we stopped for a two-night R&R in the little town of Mountain Home, Idaho. While there we took in some local sites like “Penny Alley” which encompasses an alley full of murals. More on that later.

Hand Mural – Penny Alley — Mountain Home, Idaho

For now, if we were having coffee at the Weekend Coffee Share, I’d tell you that our travels have been full of tiny steps and beautiful moments, and some fairly huge stumbling blocks as well. I’d remind you that you have but to open your eyes to see the beauty around you, and “those who do not believe in magic will never find it.”

Til next time ~Stay Wild Moonchild ~JP

Spoonie Retirement — Life, Love, and Covid Vaccine

The best laid plans of mice and men often go awry. — Robert Burns

So have gone the past two weeks here at Chez Spoons, awry. If I were to describe my life in six words, they would be “it did not go as planned.” It all started with a minor back injury, just a strain really, but OMW I did not realize how much lower back pain affects day to day life. Ouch! A series of prolotherapy injections over a 4 day period combined with some muscle relaxers, took care of that problem. Then, there was the skin cancer. A biopsy came back positive for cancer cells, requiring a bit more excising and freeze therapy to remove the rest of the onerous cells. OK, I got this! THEN, there was the medical shrug about the dyshidrotic eczema, we have run out of ideas and I decline more steroid therapy, so back to my standard “ignore it until it goes away” treatment plan. I wrap my toes in wool roving for padding before going on walks, soak my feet daily, use a good moisturizer and a non-steroidal ointment if necessary. THEN, guess what …. no go ahead, guess. I’ll give you a hint, I’ve been on a waiting list for the Covid vaccine for a few weeks now and, yep, you guessed it, my turn came up in the middle of all this. So, I got the pfizer vaccine, 1st injection. Not as bad as I expected but let me tell you, my immune system went to town. Sore arm, fatigue, muscle and joint pain, mild fever and chills subsided after day 2 and were completely gone by day 3. Not too bad but I lost a couple more days to aches and utter exhaustion. plllttttt! ;-p

Anyway … the worst is over and my routine is slowly returning to “normal” and I must say, thank goodness. Chronic illness is like a marauding dragon that shows up at the least appropriate time, wreaks havoc on carefully laid plans and demands a virgin sacrifice. But for now, it is appeased, the sub-zero temps have gone, the sun is shining, the snow is mostly gone and the weather is just lovely. Temps will be dropping again in the near future and that’s fine, but for today, My Dragon is safely slumbering and I think I’ll go have a bit of a walk about.

Til next time ~Stay wild moon child ~JP

Spoonie Saturday — Life, Love, Retirement and Sarcoidosis in the time of Covid

image from pixabay

Meet My Dragon

Greetings Spoonies and other sentient beings. J. R. R. Tolkien long ago wrote “It does not do to leave a live dragon out of your calculations if you live near him.” Thus it ever is with autoimmune disease. Bilbo Baggins faced the dreadful dragon Smaug, most Spoonies face a live dragon on a daily basis. My dragon is called “Sarcoidosis.” It’s an odd little disease that often fades into remission without signifcant treatment within 1-2 years. Multisystem Sarcoidosis is relatively rare, about 20% of patients manifest the disease in multiple organs, I am such a one. I’m not going to get into the details of the disease, if you want to read more than you ever really wanted to know about it, you can read this article from NIH. Personally, it gives me a headache.

But that’s not what this post is about. This is about how to figure a live dragon into your calculations which is an on-going project here at chez spoons. For years, I personally depopulated the Barnes & Noble self help section trying to figure out how to do “more” with my rapidly dwindling energy reserves. The problem is I keep leaving a live dragon out of my calculations.

Life changes you, age changes you and, trust me on this one, chronic disease changes you. A few years ago I could be up, exercised, meditated, fed, dressed and out the door in about an hour. Nowdays, the morning application of basic medical treatment for the multiple manifestations My Dragon is currently visiting upon me take at least 2 hours. Most of the books I have, and do, read are written for people younger than me balancing children and careers, or bored older folks looking for a change in their routine. I don’t really need to change my routine, My Dragon does that for me on a regular basis. I don’t need to find a foolproof time management system that gets all those pesky items off my To Do list. Nope, what I need to do is just what I can do. No more, no less.

There’s a great deal of serenity in acceptance of things we cannot change. I’m learning (slowly I grant you) to let go of expectations. I expected to get out for a walk today, the temperatures are a balmy 28f, but I must take into my calculations the fact that My Dragon (aka autoimmune system) is a fire drake. Today, the bottoms of my feet are covered with tiny eczema blisters (why yes it is extremely painful, even with neuropathy). Today, I will recalculate my plans and use exercise bands for a seated workout. Today, I will remember that, sooner or later, My Dragon will once again sleep and I’ll have some respite. All good things come to she who waits, always keeping one eye on the live dragon.

Til next time ~stay wild moon child ~JP

Spoonie Retirement — Life, Love, and RV living in the time of Covid

Greetings fellow Spoonies, not Spoonies, and various other sentient beings (yeah waaaay too much SciFi around here). February is the month of love and Paula’s got the February Love Me Challenge going which is awesome. Today I’m loving my RV lifestyle.

Living full time (and by that I mean 24/7/365) in an RV can be a challenge. It’s also a lot of fun. In 2019 we made the decision to “come off the road” which simply put means we sold our motorhome and replaced it with a small 5th wheel which stays at the RV park year round. The membership park to which we belong offers a moving service, as well as both long and short term storage for the times we’re off site. Now we take vacations (well not so much this past year … stupid pandemic).

So here we are still “livin the dream.” The views and openess of Hart Ranch RV resort are awesome. You don’t get this kind of views in a house, well not one we can afford anyway. This week we’ve worked hard and overcome several challenges. The temperatures have been below zero farenheit for over a week and we are living in an RV none of which are designed for long term use. The inside stays pleasantly warm with our propane furnace, electric faux fireplace and a couple of tiny space heaters.

We lost running water sometime last week. Keeping fresh water running in arctic temps is difficult at best, so when the line freezes we disconnect the hose, bring it in to thaw and run on fresh water tanks until things begin to thaw. Generally, our heated water hose keeps us going as long as we stay somewhere near or above zero. Yesterday, our reserve tanks ran almost dry, so we bundled up, hooked up the hose and refilled the tanks. The next problem is the “black tank” yep, that’s the sewage holding tank. We drain twice a week and the problem in these temps is to keep the drain hose and the valves from freezing. To that end we have a small outdoor space heater (milkhouse heater) under the RV skirts which warms the underbelly enough to keep the drain hose running.

All of this requires outdoor work. A friend who spent 6 months working in antarctica told us it took an hour to don 25 pounds of clothes and gear, to go outside for 20 minutes and another hour to get out of said gear and was worth every minute of prep spent. So, we spend 20 minutes donning 15+ pounds of layered clothing and proceed outside to do 30 minutes of work. As Spoonies, we are acutely aware of the dangers presented by hypothermia, we stay out for 5-10 minutes then come inside, warm up, and go back out to finish. Wind chills are particularly dangerous. Extreme cold can exacerbate symptoms of autoimmune disease and both of us have neuropathy in feet and hands. Even clearing a path to the car can take waaaaay longer than expected. But … we adapt (we are Borg, we will adapt, yeah OK definitely too much SciFi).

So there you have it, a day in the life of two almost cryogenically frozen Spoonie SoDaks (South Dakotans).

 

Til next time ~bundle up, stay warm, stay safe ~JP