A Retired Spoonie – week 2

Week two of retirement went by quickly, too quickly. We did more tinkering with the winterizing of the RV and got things set up mostly the way we want. A cold snap heading this way. Big events for this week were Drs. LOTS of doctors. Superhubs had his annual SCID (Spinal Cord Injury and Disease) check up. This is a grueling, exhausting, day long evaluation of his current condition and the progression of his Multiple Sclerosis with all it’s myriad symptoms. We left home shortly before 6:00 am and got home shortly after 4:00 pm. About 2 hours is drive time but the remaining 8 hours are spent at the clinic, Ultra sounds, blood work, and meetings with every known doctor, therapist, and specialist. Whew! It was a mostly good news kind of day. The good news is that he’s not lost much in the way of functionality which means he’s recovered nearly all of what he lost from 2019’s brain surgeries and strokes. The kind of “bad” news is that while he has very little in the way of MS relapses or exacerbations, he does have secondary progressive MS, which is a fancy way of saying he’s not going to get any better and now it’s just a matter of deal with the old damage. He was diagnosed back in 1999 and actually had the disease for years prior to that (based on lesion age) so for somebody with a 20+ year history of MS, he’s doing really well and I’m thrilled with the progress he’s made. There comes a time in every spoonie’s life when “no further deterioration” is excellent news. He has lost a bit more cognitive function but nothing drastic or inappropriate for his age. So we’ll continue to work on cognitive aids, physical therapy exercises for that right side (partial paralysis from strokes) and enjoy life!

The next day, I headed off for my much anticipated (and dreaded) cardiac MRI. The weather held good and the short drive to the radiology clinic was nice. It’s not a painful or invasive procedure but it is somewhat extensive and it involves a full 90 minutes “in the tube.” I spoke with the sedation nurse last week and was given permission to “self sedate” (aka pop half a valium) before the procedure. IV in; no problem, questionaire complete; no problem, cardiac stent; no problem, total knee replacements; no problem, interocular lenses; no problem, eye stents …. oh wait, you have what?!? Which ones? Huh? Although I do not believe I have any metal in my eyes from the drain/stent procedure to reduce my eye pressures (glaucoma), there are a couple that involve tiny amounts of titanium. Long story short, could not get a confirmation of the absence of any metal in the implants so, they sent me home and rescheduled for next week. Huh … well OK then.

That was enough drama for me for one week, so I spent the rest of it trying to establish a new schedule.

What we’re listening to

Til next time ~Peace JP

Spoonie Saturday – Not just tired but RE-tired!

WOW, it’s been a crazy kind of week. I’ve worked as hard or harder in my first week of retirement as I ever did at “work,” well, almost. Chez Spoons is a 32′ 5th Wheel RV trailer. Tiny but happily functional. However, RV living requires some adjustments especially when you live in a cold weather area. Winter temps here are below freezing most nights from Nov. through March and well into April. May blizzards are not unheard of.

Last week, we began our winterizing and preparation work. We moved over to the “winter site” October 1. These sites have a heat rod dropped in the water line and extra insulation around the spigots to keep the water from freezing. They also have the “big” lines winterized to keep the water coming all winter long, other water lines are shut down and blown out to remove the chance of freeze up and water line breakage. Less than 20% of the park stays open during the winter.

So, last week we moved, then immediately started our own winterizing process. The weather held good and we were able to get the RV washed which involves a long handled brush, a bucket of soapy water, and a hose. Yeah, we do it the old fashioned way. Our RV is about 13 ft. tall so working those delts and lats … (grimace). We also washed the car. Whew! After a day to rest and let the wind die back down, we tackled the skirting. We have custom-made vinyl skirting for our RV which is a lot simpler to install than conventional paneling and looks pretty darned nice if I say so myself. Putting it up is simple, but a lot of work. It involves laying out a whole lot of vinyl, sweeping any residual dirt, then fitting it to the button hooks that attach it to the RV. The sides that extend over the grass are then staked down with HUMONGOUS nails (well that’s what they look like). Then comes the fun part. On the sides of the RV that are over the concrete pad, the skirting has to be weighted down from the underside. This involves crawling under the RV and positioning sandbags on top of the skirting under flaps to keep everything in place. Yeah, it’s a big job for a couple of 60-something spoonies. Afterwards we treated ourselves to tea, tylenol, hot showers and a day “off” from heavy work. I must say I worked muscles I had forgotten about. It feels really good though to know that we can do it, that we’re still strong and independent enough to do this stuff.

The next two days were spent tinkering, adjusting, and hooking up the heated water hose. I also managed to do the pantry cooking including soup for the week, bulk breakfasts, grocery shopping, and meal planning. A very full, very satisfying week all in all.

So how about you? Are you getting ready for winter? Stocking the pantry? Cleaning the garden?

What we’re listening to right now:

Til next time ~Peace ~JP

Hazy Spoonless Days and Cardiac Sarcoidosis

sarcoidosis

“I talk a good game
for someone who topples over
putting on her underpants.” ~JPP

It’s been a tough summer here at Chez Spoons. The weather is wretched, smoke creates a smoggy haze, I wheeze, and debilitating fatigue is the order of the day. Summer flares are no fun and this particular one involves a flare up of cardiac symptoms. Hard to diagnose, near impossible to treat. So I do what Spoonies do best, I survive. I ride the wave of fatigue, don’t fight, just keep afloat and let it pass. My creative muse has deserted me. By mid afternoon I find myself spoonless and unable to do more than breathe and maybe blink. I force my way through the steps I have to take to stay “functional” like yoga, walking, meditating and proper diet. Then I collapse into bed and get up and do it all over again. Mind numbing routine guides me as I wait for the wave to carry me back to shore.

Red Sails in the Sunset – The Platters

Til next time ~Peace ~JPP

What Day Is It Anyway? — Coping with Covid 4/16/20

3.25.20 bill the cat

 

What Day Is It Anyway? — Coping with Covid 4/16/20

What day is it? Grocery day! Who would have thought that the big adventure for my week/month would be a trip to the grocer. We try to go to town every two weeks for supplies. One trip we utilize our “curbside pickup” store and pick up our on-line grocery order. No telling what they will have been able to fill for us until we get home but hey that’s the adventure part. Today was our trip to the Health Food Coop. We go early during “immunocompromised” hours. It’s a small store and there generally aren’t more than 3 people when we go which is awesome. Today was no exception.

They’ve made some changes to the store layout and everybody is masked. It was actually a rather empowering experience. For once I didn’t feel panicky or handicapped.

We managed to get the frozen blueberries and the particular bangers that we prefer. Also casein free not-cheese and the extremely dark (92%) chocolate that Superhubs likes. Picked up some fresh bananas and apples, a couple of sweet potatoes and …. oooooh fresh organic strawberries! Also managed a 4-pack of toilet paper and an extra liquid hand soap. We deliberately passed on a few items like cabbage, packaged salads and mushrooms just because they didn’t look “good.” No soft margarine, onion powder or potato flakes but my situation isn’t dire and I can probably get those from the grocery pickup in a week or two.

Then we went by our drive-thru pharmacy, picked up my prescriptions and a bottle of isopropyl alcohol that the clerk was kind enough to snag off the shelf for me and pass through the pickup window.

We did the drive through food stop at our local Starbucks. First time in MONTHS we’ve had something that has not been prepared in our kitchen. Let me tell you a coffee and bagel never tasted so good.

So, today’s been really good. Warmer weather coming should enable us to take down our RV skirting this weekend which I’m looking forward to.

Oooh Child — The Fire Stairsteps

Til next time ~Keep your face masked and your pantry full ~JPP

What Day Is It Anyway? – One Liner Wednesday – Coping with COVID

2019-20-1linerweds-badge

For Linda’s WDIIA and One Liner Wednesday and my own Coping with Covid-19

3.25.20 bill the cat

“In my defense the moon was full and I was left unsupervised.”
~Unknown but probably adapted from Lee St. John

Coping with COVID-19 – day 6 — Errand Day

It’s been a busy day. We ran errands, yep, put on pants, drove to town and used the drive thru pharmacy. Woohoo!! Take THAT boredom! Seriously, I don’t really have a problem with being bored but I do get stressed about running out of important things like vegetables …. and coffee …. and chocolate. So, I asked a friend to pick up some frozen veggies and eggs for me next time she goes to the grocery, ordered more coffee from Amazon. I’m still staying away from stores. My “case nurse” from the health insurance company called last night to make sure I’m getting my meds OK and asking me to “stay out of public as much as possible.” I’m touched by their concern … no really I am. I’m a high risk patient; they know it and they don’t want me to get sick … like they REALLY don’t want me to get sick $$$$. 😉 So after the grand excursion I’m taking some good advice and keeping my mind occupied. I’ve done my chores (lots of sanitizing). It’s raining/snowing so no outdoor walks today, yoga however is still on the agenda, trying to stay active.

Sleepy Santosha – Grounding Practice

Til next time ~Namaste ~JPP

One Liner Wednesday – Spoons

2019-20-1linerweds-badge

For Linda’s One Liner Wednesday – go get some inspiration, go on … you know you want to, it’s OK, I’ll wait *insert theme from Star Wars*

3.11.20 low on spoons
Digital art from my polyvore collection

Today I am just too low on spoons
to give a fork. ~JPP

I Will Get Back Up Again — Anna Kendrick from the movie Trolls

Til next time ~Peace ~JPP

Spoonie Sunday — Recovering

flares
artwork found on pinterest

Greetings fellow spoonies and not spoonies. How’s your weekend shaping up? Here at chez spoons we have a light dusting of snow, just enough for prettiness, not enough to mess with the roads. As most of you know, I’m recovering from “major surgery.” ‘Nuff said.

So, I’m dealing with recovery, AND a cold/flare. Don’t know which but I have a bunch of symptoms that ARE related to the surgery (general exhaustion and some pain) and a whole lot of symptoms that AREN’T related to the surgery. The sniffles, congestion, cough (ouch!) achy muscles and joints, general BLEEEEKKKK feeling and brain fog. Anyway, the point isn’t so much what’s causing the various symptoms, it’s more what the heck to do about them. Continue reading “Spoonie Sunday — Recovering”

Spoonie Sunday – Choices

Spoons

Our prompt for Linda’s Stream of Consciousness Saturday was “Choices.” Which got me to thinking about spoonie choices. Now choices are something that every spoonie deals with on a daily basis, I mean really that’s pretty much the definition of a spoonie. Choices are also the bane of many spoonie’s existance. What to cook, what to wear, shower or no? yadayadayada … No relief in sight always choices, everywhere you look. It’s a huge burden for me. Maybe less (or more) for other spoonies. Partly it’s a side effect of brain fog but some days decisions or choices are just impossible for me to manage. Here are a few examples, Continue reading “Spoonie Sunday – Choices”

Spoonie Sunday – JusJoJan 19 – Gratitude and gobbledygook

For Linda’s JusJoJan prompt for January 19th, 2020, “gobbledygook.” Use the word “gobbledygook” any way you’d like. Today’s prompt is brought to us by Jim.

Spoonie Gratitude

“Gratitude is a choice I can make every day.” My dear Mother sent me a kitchen towel with that slogan on it many years ago during a particular low point in my life. Back then I was an arrogant 30-something with a career, children to raise and stuff to do. I regarded that precious slogan as a bunch of gobbledygook, nonsense meant for the weak willed. Continue reading “Spoonie Sunday – JusJoJan 19 – Gratitude and gobbledygook”

JusJoJan Spoonie Sunday – Intentions

Today’s Just Jot It January prompt was generously supplied by Faye, of Faye’s Mystical Musings. Thank you Faye!

Your prompt for JusJoJan January 5th, 2020, is “intention.” Use the word “intention” any way you’d like. Enjoy!

Excellent prompt for today, which is also Spoonie Sunday here at Wide Eyed Wandering Spoonie. Continue reading “JusJoJan Spoonie Sunday – Intentions”