Bored Now

I’m taking a break from my constant kvetching about my health. NO, really I am! Sadly, I have little else to say.

On an up note, my new at-home physical therapist will be here later for an eval of my pathetic-ness levels. She'll set up a plan, a scheme to get me back up and hobbling. Plus, I’m exhibiting slightly less weakness today versus yesterday. So far anyway. Yea me, huh?

Oh, here’s something, Ten and I will go look at cars on Saturday. We’re after an all electric Mini. I’m psyched! Psyched despite our disagreements over color. I want bright orange and yellow paisley with a hint of turquoise (that's not so over the top is it?). Ten’s into grey. There’s a compromise to be had, I’m sure of it!

I expect I’m repeating myself here. Considering how little I’m able to get up and out, you wouldn’t need a crystal ball, a precog or a weatherman to see the wind blowing that way.

Yup, I've hit the big, shiny fatigue heights with myself. What would Willow do?

Patience on Line One

After barely making it out of the house and down the porch steps to the car (my left leg strength and mobility is history, a memory—I’m a one legged queen), Jen, Ten and I slogged through rush hour traffic to MGH. We got into the underground garage and had to motor down to a shockingly low level before finding an available cripple spot. GEEZ, there are OTHER disabled folk with early appointments at a major urban hospital? It’s not just me? How fucking rude!

In any case we got a space near an intensely awesome boat. THIS is how to decorate for the season! More pics below.

So, we went up to the vampire lab where the techs took a bunch of blood. It was tested and then we were off to see Christina, Doc Plotkin’s head nurse. The good news is that my tests came back ‘normal’—as normal as I ever get. Yeah fine but where does this leave us vis-à-vis my leg. I’m pretty much sick of this immobility shit.

Christina and the good doc figured the root cause is one of the two anti-seizure meds I’m on. I’ve been on max dosage of both. The not-so-cheery news is that I will always be on anti-seizure drugs because that rat bastard meningioma has altered my motherboard’s workings. Though the tumor’s no longer in residence, I will never be ‘normal’ again. (HAH, little do they know, I was never ‘normal’ to begin with!)

Where to now, Saint Peter? We cut the dose of the more side-effecty of the two meds. Now we wait and see. So far nothing—no seizures and I’m still a pathetically weak motherfucker—BUT it’s not like even 24 hours have passed since the first reduced dose.

Also, I’m back to having visiting physical therapists because I’ve lost all gains made since leaving rehab this past April. Joy.

I’ll get to Recovery City someday. I gotta be patient. NOT one of my superpowers.
 

Finally!

From Saturday's brief roll along the seawall

Heard back from my neurologist about the intense weakness I've had for three weeks now. First, he asked Jen what WE thought the cause might be. Why did he ask? Because we’re smart (hey, if your big time neurologist says so it MUST be true) and he wanted our input.

She explained that we’d come to the conclusion that the monster strength loss must be due to an imbalance or something related to my meds. Weakness begins shortly after I take my pills at 7AM and begins to lift at 4PM—a few hours before my evening dose. There are only so many pills I take twice a day so the strength thief has to be one of them.

He agreed. This morning, soon, I'll go in to the vampire labs at MGH where they’ll drain me (well, sort of). Afterward, I’ll see Plotkin’s head nurse for a bit of chitter chatter. Possibly this Hell beast will be resolved in short order and I’ll be back on the recovery train.


HOPE!

Groceries

In an effort to get back to abby-normal Jen and Ten took me to our  local Stop&Shop yesterday. It’s been so damn long since I’ve been in a store of any kind—I was absurdly excited. Also stunned. Absolutely everything has been moved around since last year. There’s no more hippie/groovy section! Yes, veggie burgers and soy cheese (etc., etc.) are still sold but they’ve been integrated with the regular dairy, meat, frozen meals and snack sections. Huh. OK but I couldn’t find tofu—WHERE the fuck was it? And how about tempeh?

I was too distracted by the Cheese Balls and Marshmallow Fruity Pebbles to make a heavy duty concentrated search. Distracted why? I need to know—are these two items actual, fer real foods? I’d be shocked to read that either have more than trace elements of anything that wasn't created in a lab.

Another thing about the Marshmallow Fruity Pebbles—it’s named for Fred and Wilma Flintstone’s adorable baby daughter but the box shows only Fred and his bud Barney Rubble whooping it up. What the Stone Age fuck? The kid gets NO credit? If it was named for Bam Bam, I bet he’d be all over the damn box. Ya know?

The other reason for not finding tofu? I was in my wheelchair with Ten at the helm. (Jen was pushing the cart) I felt too guilty to demand, more than I already was, that we peruse this section or that one more time.

• Let’s go back to the aisle with the black beans!
• Can we cruise the veggie shelves one more time? I may’ve missed something.
• Did we hit the frozen pizza fridges yet? I wanna try the cauliflower crust ones.
  

I make an effort to keep my self obsession tendencies at least a little bit under control. Not always successful here.

I realized something while in the hummus section—I always get tabbouleh and tzatziki confused. That and I can’t spell either one (without google) on a bet. Fascinating, no?

Here’s what stunned me most about yesterday’s little shopping extravaganza—almost NO one was wearing a mask! Sure, the employees all were but the shoppers? Not so much. We were masked and in a teeny tiny minority.

I know that Massachusetts COVID rates aren’t through the roof but, shit man, let’s not get cocky and stupid!  The storm’s not passed yet.

Back to abby-normalville though—I want to get outside more even masked up and in a wheelchair. There’ll be NO eating in restaurants but maybe we could take short drives to places other than PT and MGH.

That’d be nice.

One last thing—I did NOT buy the iced sugar cookies. I LOVE these calorie laden treats and should be applauded for not throwing a box or two in our cart. C’mon, give it up for my tremendous display of self control!

Dogs and Dreams

NEVER, EVER read a book where the dog dies at the end. OR worse yet, 50 pages in from the end. What's the deal? Perhaps this sappy but previously considered imaginative and kind of talented author needed to spend the final pages having every damn species (including orangutans and elephants) paying teary but dramatically regal homage to their beloved fallen brother (whether they knew him or not).

The book was a dystopian fairytale with some horror mixed in but killing the dog made no fucking sense. It didn’t advance the plot and just felt like a cheap, tits–on–a–boar–hog addition to the story.

I have questions:

1. Was she being paid by the word and found herself jammed up for ideas on how to meet her quota?
2. Was she trying to win the animal soap opera set? Was there also a big white animal wedding but her editors cut that for being too over the top?
3. Did they demand ‘kill off a beloved character. Make the readers cry or the deal’s off.’
4. Did this start as a dark Sesame Street movie idea but the producers stipulated that, 'if you make the kids cry, you gotta go over the damn top to make them feel good again.'
5. There’s the old saying, don’t make an author angry—they’ll kill you off in their next book. Did a dog do her wrong and this is her way of getting back at it?
   

Hell’s bells, I don’t even like dogs and my eyes were leaking until she totally overdid the dog funeral shit. It also made certain I'll never read anything by her again. EVER.

AND I dream dead people. 

Numero Uno: I was pregnant but hadn’t known it. Yes I’m 63 but in the dream a coquettish fertile 60. I was in town and made an emergency stop at the Brigham for my incredible stomach pain. That twarn’t no tummy discomfort, that was a healthy red haired and blue eyed bambina.

In this sleepy time movieola, I was thrilled to bits. TAB was the father. I called to tell him the odd news (at 77 he became a daddy!). I then called Hillel—come see, come see!

I marveled over her eyes. SO blue—just like my father’s. The ginger hair was exquisite if mystifying—neither TAB nor I were/are redheads.

Numero dos: I was at my parent’s wee cottage in Western Pennsylvania where I’d turned their old bedroom into a studio. Outside, a monster blizzard was underway. Suddenly my old chum Tom walked through the door. I squealed ‘you’re not dead, you’re not dead!’ 

He explained to me that his death had been faked for some reason that I couldn’t quite grasp. He and his wife were on the run…kind of. He wanted to stop by to say hi and talk about my paintings with me. We had a phenomenal yet brief chat and he was on his way, back into the storm. I rushed out to his car to ask one last question—would I see him again? Yes but not much and he couldn’t say where or when.
 

I hate mysteries.

Coupla Things

Had a friend who told me, prior to a brain fry up 22 years ago, that she wouldn’t be coming to the hospital while I was in. OK, cool. Actually, I hadn’t been expecting her to. She went on to say it was because, essentially, hospitals gave her the willies. Gee, RILLY now? Me, I just can't get enough (or so you'd think with all the time I spend there).

Claire totally didn’t need to add that last bit or say anything beyond ‘cheers and good luck.’ I understand that a lot of folks want company when they’re in Hell but I’m mostly cool without. While I welcome visits, after all the times I’ve been in, I’m honestly fine with just having (or having had) TAB, Ten and Jen in. Anyone else is an unexpected, if awkward, bonus. I hope no one expects upbeat chitter chatter. I’m mostly in the nap, read or stare out the window zone. Also, visits feel a little like my friends are paying their last respects before I go to the valley below (yes everything IS a song cue but you knew that).

No offense intended—I’m going through some intense shit though. I need to look inward and forward, get my recovery motor revved and catch a boatload of Zs. Having treats or flowers (both!) delivered is actually a better idea.

Point of the story—don’t feel compelled to visit. I'd love to see you but don't expect much from me. I know the whole sitch is sad, weird and awkward. A funny card and some chocolate (dark NOT milk) might be a better idea for both of us. Thenkyew!
~~~
An acquaintance asked folks, on Shoutyface, to list the ten greatest albums of all time. I love these requests for lists. They put my bean back into Music Land, a place I wished I never had to exit. 

Given that ‘greatest’ is entirely subjective, I listed my couldn’t-listen-to-these-enough albums. OK, 21 and I could’ve gone on and on. Below, in no particular order:

    1.    Rhythm of the Saints–Paul Simon
    2.    Brain Salad Surgery–Emerson, Lake and Palmer
    3.    Abby Road–Beatles
    4.    Ten–Pearl Jam
    5.    The Downward Spiral–Nine Inch Nails
    6.    Stop Making Sense–Talking Heads
    7.    Blood on the Tracks–Dylan
    8.    Here Come the Warm Jets–Brain Eno
    9.    Who’s Next–The Who
    10.    Exposure–Robert Fripp
    11.    Aladdin Sane–Bowie
    12.    The Rise and Fall of Ziggy Stardust and the Spiders from Mars–Bowie
    13.    Graceland–Paul Simon
    14.    Tarkus–Emerson, Lake and Palmer
    15.    Take Five–Dave Brubeck Quartet
    16.    Kind of Blue–Miles Davis
    17.    Black President–Fela Kuti
    18.    Diamond Dogs–Bowie
    19.    Hand of Kindness–Richard Thompson
    20.    Shoot Out the Lights–Richard and Linda Thompson
    21.    Joshua Tree–U2

And that’s not even touching classical. 

C'mon, what are your ten favorites?

Facts and Hope

I’m still waiting to hear from Doc Plotkin about my muscle weakness (though Nurse Candy Striper did respond and seems to be taking the sitch more seriously). I just want the facts—something tangible that I can deal with OR just get used to.

Facts are simple and facts are straight
Facts are lazy and facts are lame
Facts don't come with points of view
Facts don’t do what I want them to
Facts just twist the truth around
Facts are living turned inside out
Facts are getting the best of them

In case you were wondering, Stop Making Sense, the Talking Heads concert film came out 21 years ago. BEST CONCERT FILM EVAH! I saw it at least 10 times in the theaters and bought the video as soon as it came out.

Meanwhile, I woke from the Land of Nod after, !BAM!, full on, THE worst nightmare I’ve ever had. It ended with me screaming and crying and that’s what I was doing when I reached Wakey-Wakey World too.

Have you had dreams that carry over from nocturnal Horror-Show Land to Eyes-Wide-Openville? You know, dreams where it takes you more than a couple minutes to recognize and distinguish the sleep-show from reality? You have to tell yourself, over and over, that was just a dream, that was just a dream You’re awake now and that wasn’t real.

This has happened to me less than a handful of times. It’s always a batshit terrifying nightmare—never about world peace, fluffy kittens and ice cream with no calories.

What was this one about? Because I’m keen on NOT replaying the trauma, all I’ll say is this—TAB died again and it wasn’t pretty. AT ALL.

I’ll work out what this motherfucker means with Janice later this morning. It won’t go away if
I ignore it. That’s one thing of which I’m sadly certain.

“Hope” is the thing with feathers
~ Emily Dickinson

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -
I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.

I’m lucky. I have Ten, Jen, Oni AND Coco taking care of me and my most intimate needs during this obscenely long recovery. I worry they’ll all get sick of me and the amount of work that goes into being in my life now. 

I still have hope that I’ll walk again.

Did I Mention This Already?

I’ve lost a shit-ton of strength in my left leg over the last two weeks. It’s gotten to scary levels over just the last five days. Mind you, the worst of this happens between the hours of 9AM and 5PM or 8AM and 4PM. I’m guessing that weakness punches in and out for regular eight hour shifts

I still have sensation during that space of time but ridiculously little ability. Since Sunday, I can’t even do the easiest of my rehab routines (unless I attempt them before 8AM or after 5PM and, even then, I’m limited).

Jen called Plotkin’s office and I emailed via Patient Gateway. When we each finally got a response it was from some brine shrimp brained, zero neuro experience (seemed obvs), first time ‘round the block-er. HELL-fucking-O, I have one rare motherbanger of a neuro condition goin’ on here. Can I get a response from someone whose candy striper uniform isn’t still hanging in her closet?

Maybe someone who GETS that nursing is about WAY more than taking temps, checking blood pressure and smilingly asking how are WE doing today. Bast forbid I give anything other than a positive answer. If my answer is anything less than upbeat, her response will be a tilt of the head with a frowny face before she breaks back into smiles, saying ‘well, your breakfast will be here shortly.’

No NOOO, I haven’t walked this road before. What makes you think that?

In any case, Jen and I both, politely and respectfully, gave Nurse Candy Striper the 411 yesterday. We told her my symptoms and everything I’ve been doing differently in the the last few weeks in my own effort to ascertain the root cause of this scarifying weakness.

Not unexpectedly, she didn’t respond. I imagine our reply to her ‘how are WE doing' was a bit too honest and over her head.

Jen and I MAY’VE sorted out the problem for ourselves though. One new element was the addition of Senna to my twice daily voluminous med intake. Both my PCP and the nurse said it wouldn’t interact badly with the drug store worth of pills I’m already taking. Great.

What they didn’t address is that it shouldn’t be taken long term (don’t take for more than two weeks) because, amongst other things, it can cause muscle weakness.

Gee, guess who really, really needs to build back, not reduce, muscle strength right now. Would’ve been great for my PCP to mention that when she recommended those little brown pills.

Jen will, again, try getting in touch with Plotkin himself today, just to be sure. I’ll go to PT and see if my therapist has any advice on how to handle this.

Meanwhile, I’ve stopped the Senna and am hoping that shit’s outta my system ultra fast.
(pun intended or not? You be the judge)

 I don’t know if my difficulty in reaching my neurologist OR a nurse with experience is COVID overload related or no. Seems unlikely, since I’m in the rare neuro shit department not the general population but who knows?

From Ten's morning walk