Category: Life

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

February Love Me 19 — Good Vibrations

Paula is hosting February Love Me where we’re celebrating the season of amore by posting one thing we’re loving every day of February. Today, we saw temperatures above freezing for the first time in over 2 weeks. The sun is shining like diamond glints on the snow and little patches of road are starting to show through (which means travel will be easier). I’m remembering my high school days in Redondo Beach, California and I’m lovin’ the Beach Boys. This is a classic and massively underrated piece for it’s exquisite musical complexity.

Til next time ~Hang Loose ~JP

First Line Lyric Thursday — Fated

For Paula’s February Love Me where we’re posting something we’re loving every day of February. Today I’m loving upbeat music. Specifically my “Bright and Perky” playlist and the song, “Brighter than the Sun” by Colbie Caillat.

Also for First Line Lyric Thursday, I’m selecting a line from a song and using it as the first line of a poem. This week’s entry is from “Brighter than the Sun” see the video after the poem. Chosen line: “Who am I to tell Fate where it’s supposed to go?”

Fated

Who am I to tell Fate where it’s supposed to go?
To foreswear love’s right to bloom and grow?
A heart that was broken when Fate intervened
does not question the underlying need
to mend all that was battered and torn
to bind the bruised, haggard soul forlorn
with empty heart and wearied soul
you found me then and brought me home
more joy found than we ever hoped to know
who am I to tell Fate where it’s supposed to go?

Til next time ~stay wild moon child ~JP

February Love Me 17 — Running Water

image from Pixabay

Paula is our host for February Love Me where she says “Let’s celebrate the month of lurve by posting one thing we love every day throughout February.”

Today I’m loving … wait for it … running water. YES! After two weeks of sub-zero (Fahrenheit) weather, (for those of you on the Celsius scale we’ve ranged -18c to -28c) we have finally broken through into positive numbers (in Fahrenheit at least). And with that we’ve got running water to our RV once again. Although the RV park shower house is usable in freezing temps, it’s not as nice and cozy, and well … warm as my own postage stamp sized shower.

Til next time ~stay wild moon child ~JP

February Love Me 16 — Bulk Buying

Paula is hosting February Love Me “Let’s celebrate the month of lurve by posting one thing we love every day throughout February.” And away we go. I’ve had to dig deep this month two weeks of temperatures below zero Fahrenheit with dangerous wind chills have left me a bit “well let me tell you what I’m NOT loving this February.” Now, now JP that’s not the spirit *shaking my head a bit and searching frantically for my hot tea*. So digging a little deeper today I’m loving: my local Coop bulk ordering. I’ve stocked up on some great deals in organic nuts and spices.

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

February Love Me 11 — danger zone

Paula’s hosting February Love Me: “Let’s celebrate the month of lurve by posting one thing we love every day throughout February.”

Temps here are below zero farenheit, again. Wind chills are in the “dangerous” zone. We live in an RV and although it’s an “arctic package” it still requires special steps in these temperatures. It’s fairly warm in the “house” considering it’s -14f outside (air temp wind chill is much lower) but today I am really loving my thermal tights. They’re just a pair of footless spandex/jersey weight tights but they give just that extra bit of warmth that is not only delightful but absolutely necessary right now.

Til next time ~Stay calm and wear thermal underwear ~JP