The TM Experience Continues

Tempus fugit…or some such shit…
When I last posted (on 11/24/23) I expected to post a week or so later about my second week in the hospital with lots of goodies from “my gizmo” (the dictaphone that I wrote about in that post).
November 24 was almost 90 days ago?!?!
WTAF have I been doing since?
I did send out a Christmas e-mail with a jib jab, news about what happened to me on 9/17 and a couple of links to songs worth a listen or two.
And I dropped 450 words on Dec 30 on Caring Bridge wrapping up postings there for awhile re my Transverse Myelitis until there is a major milestone.
Both of those resulted in some enjoyable communication with friends near and far. E-mails & calls. Good times.

But mostly the elapsed time has been spent, in no particular order: doomscrolling; streaming; sleeping (since I came home I sleep more hours a night and naps are rare now??); watching hoops; listening to music (checked out a Lot of albums nominated in various Grammy categories. haven’t watched the show in decades…but there is some good new music…don’t listen to those stodgy and close-minded who say otherwise); texting and emailing; on the phone a bit (mostly calls I initiate. The majority of my in-coming calls read “Suspected spam.”); therapy (with “professionals” and with Shelly); and wrapping my head around life with TM (it’s a 24×7 exercise).

Since I’ve been so derelict about posting to my blog (it essentially died during covid…but that is gonna change) this piece will be long (and it will bounce around like my conversations do. Be prepared for tangents… {and lots of parentethicals})
If all you care-about/wanta-know is the answer to “how are you doing Steve?”: I’m upright and still pretty normal above the shoulders (normal??).

–Not getting out much. Because of TM, no vaccines for me so I’m keeping my distance. (Plus with my TM ravaged nerves, my body doesn’t like cold at all!)
–A walker will be taking me most places for awhile, but Shelly and I do some “cane walking” (and the occasional & short “no device” walk in the apartment).
–Driving is not anywhere close to near term. (Shelly is a great chauffeur. But she likes to be driven around…and that day is coming again {hoping for ‘24})
–PT twice a week for awhile at Cox Outpatient (and exercises at home daily).
–My stamina ain’t what it used to be. I was averaging 12K steps a day b4 9/17/23. Now a quarter mile walk with my therapist requires a break and a glass of water.
-=-=-=-=
If you read on, there are a few snippets from the gizmo and a more detailed ramble, but be warned that it might verge into “TMI” (I’ve shared/subjected-people-to even more specifics on the phone…if we haven’t talked, you’re missing out!).
One thing I now talk about in my Transverse Myelitis world (that I seldom talked about with anyone before {including with Shelly! Boy-o-boy has TM changed our daily existence…}) are Bodily Functions.

Regarding the plans I had for a piece from my second week in the hospital and another from my 3 plus weeks at Meyer for inpatient rehab, it turns out that a lot of the stuff I dictated while in both the hospital and the rehab hospital was day-to-day, with a focus on people who visited or called or gave me therapy….or the meals. (I ate LOTS of salmon and asparagus and chicken potpie at the rehab hospital!)
The gizmo captured a lot of the mundane.

After that late November post, I discovered a FB group for Transverse Myelitis. I like the perspective of most people in the group: no looking back, no speculating about the cause, no wallowing in the past.
Instead focus on today and the future…living each day.
1. Day. @. A. Time.
=-=-=

From the gizmo with a tie to where I am today:

Gizmo at 7:50 am on Monday, Sept 25: “I had two successes today. One was that I was able to pick up a little thing of grapes. Drop it on my plate and pick up each grape and successfully put it in my mouth.” My doc laughed when I told him: “Heck Steve..I drop stuff all the time.” (for the first few weeks, all my eating was with my left hand. TM hammered my right side more than my left…)

“And the other success was this afternoon in PT, with Courtney. She got me to sit up on the side of the bed. And then she asked me to stand up, and I stood up four times! Hard to believe. It was shaky and I needed lots of help. Standing up was huge.”

It’s important to note that I didn’t “stand up” on the floor…I stood up on a device called the “SA400 sit-to-stand patient lift.” I used my arms to pull myself up…my legs were “just there.” They were no help. Standing up really meant that I was vertical for the first time in a week.
And “got me to sit up” meant that she helped me drag both legs off the side of the bed and helped me pull up to a sitting position.

In response to my “standing” Shelly posted this on 9/25 on Caring Bridge: “We both cried it was so great to see.” (We cried until we laughed…)
She also posted a couple of short videos on 9/22…and I’m glad I don’t know how to include them here, especially the one of my right hand. It was scary how messed up I was 4 days in.

Standing has gotten easier over the past 5 months…but it’s still not easy.
One of the exercises I’m doing in PT in Feb 2024 is “sit and stand.” (That is as simple as it sounds. Simple, but NOT easy.)
Depending on the height of what I’m sitting on, I might even be able to stand without holding onto anything.
But I can’t stand up if I’m sitting on the couch without pushing off of the arm and the cushion.
And I can’t get off the toilet unless there are grab bars. (Have you ever noticed how low the standard toilet is?!?)
Standing up uses the glutes…and TM wiped mine out.
-=-=-=
Sept 28 from the gizmo: “It was an awful day yesterday. Perhaps the worst day of my life other than when my Mom died and later when John Crudele died.”
Here’s the summary of that awful experience (I went on for over 500 words talking into the gizmo): my catheter got pulled out of my bladder and into my enlarged prostate. Severe back pain and stomach pain for several hours. Confusion on who could replace the catheter. Had my first ever morphine. Helped briefly. Shift change. Catheter finally replaced. 2000 ml of urine immediately fills the bag.
I felt like I was gonna die for hours.
If my bladder had burst, I probably would have.

[The gizmo left out the part about me telling Shelly and my sister what I wanted to have happen when I died. (I’m not sure how scared they were, but I was scared plenty…)
Cremation. No funeral. A Celebration of Life at The Rock House. A headstone and a few ashes at the Weiss Cemetery outside Doe Run, MO. Some ashes sprinkled at the Oregon coast and at Gulf Shores, AL.]

Almost five months into TM, I still have a catheter and will for the foreseeable future.
It’s right there in the wikipedia description of Transverse Myelitis: “dysfunctional urethral and anal sphincter activities.” (the latter is gonna get it’s own blog post.)
I had a uroflowmetry procedure several weeks ago. At that time, my bladder and urethra were too weak for me to pee. Hopefully that will change…
But until then, I can drink mass quantities of H2O and not worry about how many times I’ll get up at night. I can eat mounds of asparagus and not care about how much my pee stinks.
-=-=-=-=
Sept 29: “Got to the gym in a wheelchair. But my blood pressure just bottomed out. I think the last reading was like 72/40.” PT got me back in bed.
Sept 30: “Today was the first day I took any steps. Walking the parallel bars. It’s going to be a slow process.” The 10 or “steps” included a therapist in front of me clutching my gait belt and a tech following close behind with a wheelchair. (This was 13 days after we headed for the ER.)
If I hadn’t taken those few steps I wouldn’t have been moved to an in-patient rehab hospital 2 days later. It would have been to a “skilled nursing facility”…i.e. a nursing home.

On October 2, 2023 I was transported to the Meyer Orthopdeic and Rehab Hospital. The typical stay is 7 to 14 days. I was discharged 24 days later. For the first 10 days I still needed the SA400 to get from the bed to the wheelchair. It was a week before I could sit up on the side of the bed without assistance. The only time I walked using a walker was in the gym with a therapist.

I improved a lot at Meyer. I had 2 hours of OT and 2 of PT 5 days a week, and a couple of hours total on the weekends. 3 of the sessions with OT involved taking a shower and getting dressed.
Those showers were ordeals and tiring. (With time they’ve gotten easier…but I will be using a shower chair for the foreseeable future. It did get easier after the haircut that first weekend at Meyer that resulted in a 14.5 inch ponytail to donate to Wigs for Kids.)
While there was significant improvement, I was still using the wheelchair when I returned to the apartment on Oct. 25.
Now it sits in a corner, unless I sit in it on the balcony or at the dinner table. (Those chairs are too low for me to be able to stand without help…)

After Meyer I received OT and PT at Ozarks Neuro Rehab. I “graduated” from there when I was discharged from OT, which focuses on the tasks of daily living. They also work on upper body strength and manual dexterity.
RE the latter, at every exercise I let the therapist know that I never had all that much manual dexterity to begin with. I did have some upper body strength b4…but not nearly as much now. (I haven’t encountered a jar that I haven’t been able to open. Yet…)

I’m currently getting PT twice a week at Cox Outpatient. The focus is on mobility and balance. At therapy I walk with no device and a therapist hanging onto my gait belt….we’re working on improving my step length.
I’m not “tim conway” but my stride is short.
In and out of the apartment I get around using a walker. As I said before, Shelly and I practice walking with a cane or “unaided”, but I’m not ready to go it alone…or outside B-307.
-=-=-=
A few things that I didn’t list above:
–I have constant nerve pain in both legs and feet. It’s a shooting, stabbing and burning sensation. When I wake up there are always spasms. The first thing they ask in therapy is if you have pain. I’m always a 2. (If they’d ask when I’m having a spasm it would be a 7 or 8. {Dentists have always told me that I have a pain threshold…just sayin’})

–There is this “banding” thing with TM. It’s a bandlike tightness, often around the belly. I also have it around my knees. All the time around both knees. (only on occasion around the belly…) It feels like I have tight knee braces on All The Time. It’s pretty maddening!

–I’ve often posted my “Monday routine” on FB (usually with a link to a song on Youtube before and after the day’s tasks).
I was a house husband. I put out the garbage. I put away dishes. Did laundry. Stripped and made the bed. Made a run to the library&Aldi. Swept the kitchen. (Some Mondays I dusted and mopped the kitchen and bathrooms.) Vacuumed. Got in 10-12K steps. Most likely I celebrated 4:20.
I “graduated” Occupational Therapy on 1/5/24…but I can’t do ANY of those things today. I do fold the laundry. I can use a broom and dustpan. (And after a several month layoff I did come across some aged gummies and a working vape pen. )

–I don’t read as much as I did before 9/18. I’m thinking it’s one of the many side effects of the 800mg 3x a day of gabapentin. (Some of my magazines barely get touched before they’re headed to a downstairs table to share.) My tablet keeps me company awhile every day with NYT and WaPo. (I read lots of headlines, but seldom launch a story that’s more than 6 or 8 minute read.)
Gabepentin is for the nerve pain. But there is NOTHING to rebuild nerves. They’ll heal (if they ever do) on their own sweet time.

–I’ve made lots of specific goals/targets/wishes since late September ‘23. Surprisingly most of them are music related. LOL.
I’ve bought tickets to shows that I had to give away.
I hope it’s not the last time. (I like treating folks to live music…)

I’ll/We’ll keep making plans and buying tickets. Shelly has encouraged me to stop buying tickets in the near term, but she knows I’ll never really stop. I’ll just be very selective about the venue and the artist.
I hope to take in some house concerts and local shows…but I’m leary of small&packed rooms.
I don’t expect to be going anytime soon/ever to any festivals that require much walking or venues with lots of stairs.

My quantity of live music will never be the same as it has been the last dozen years since moving back to Missouri and discovering The Rock House….and having “my musical epiphany.”
But it will still Be.
Not a whole lotta people that I know have seen as much live music as I have.
I know that I am a lucky…and very Grateful… old coot.

–I’m not sure how to reply to people saying to me that Shelly & I are inspirational..or whatever it is they say.
I think we’re just a couple of introverts being very open about what is going on.
When we “were courting” we shared our picnics on FB. TM is a very different kind of picnic that we’re being open about.
But Believe me, I get choked up and sincerely appreciate every time friends (and FB friends who I may have never had a conversation with) say such nice things, make compliments, tell me they’re praying.
I don’t do the third component (crying) of a “Jimmy V Day” each and every day, but there is lots of laughing and thinking every day at our place.
Kind words and encouragement always leads to tears,

–A couple of my friends surprised me when they said something like this: “so you were really sincere with that every sandwich line?”
What the Fuck???
Of course I was sincere.
Jeez.
Enjoy the Reuben or Veggieburger….or waterfall or sunset. Eat it all up. Cherish it.

I didn’t name this blog “Things Happen” because I buy into that lame-ass “everything happens for a reason” thinking.
Get Real.
Things happen until they Don’t.
U Gotta Enjoy Every Day. (There will some Hellish days. Yeah there will be. But compared to the alternative, I’ll take alive&breathing. Thank U Very Much.)

I’m often a broken record. Sometimes it’s new and different.
But somethings never change:
Enjoy Every Sandwich.
Don’t be stingy with your hugs.
Tell them that you love them. Now.
Be. Just Be.

 

Room 849 at the Jared Neuroscience: Week 1

“It still doesn’t seem Real” ends with me being paralyzed.

This piece, and any that follow, will be getting help with excerpts from “my gizmo.” The “gizmo” is a Sony Dictaphone. {I bought one for my Dad several years ago in the hopes that he would tell lots of his stories into it, so that I would have them for posterity. He dubbed it a “gizmo” and it was only used when I was at his place. I got one for me and use it to clandestinely record our phone calls. Shhh…he doesn’t know.}
Since I wasn’t able to use a laptop between 9/18 and 10/26, I started keeping “notes” using the gizmo while I was at the hospital and inpatient rehab. {I have been keeping a journal on my laptop since 10/26/12. Wish I’d started loooong b4 that!}

On the morning of 9/18, as soon as a room was ready, they transported me to Room 849 of the Jared Neuroscience wing of Cox South. I wasn’t able to use the gizmo until the 23rd.
“They seem to know what they’re doing. But they’re having trouble diagnosing exactly what’s wrong with me? They put me on something called an IVIG* thing on Monday and on Tuesday I was getting a little use of my left hand, still nothing with my right on Tuesday and I’m probably getting some of this messed up because I’ve been on so many drugs, but not the kind of drugs I like.”

At first they thought it might be GBS. “There’s the Guillan-barre syndrome. And this other one. I have a total mind block on what it probably is…I can’t remember the name!” {I’m pretty sure I’ll never ever forget those two words now: Transverse Myelitis!}

My extreme claustrophobia didn’t help with the diagnostic process. “On Tuesday they sent me down to do an MRI and as soon as I got into the tube I pressed the button. I was freaking out. An hour later, they sent me back down. I stayed in there for like 40 minutes. I don’t think I squeezed the button, but maybe I did and it turns out that they would have liked two passes, one without contrast and one with. I didn’t do the with contrast, and came back upstairs.”
My neurological NP and hospitalist were great. They told me how important the MRI with contrast was. “They loaded me up with Benadryl and a shot of Ativan and I did it for the duration. They discovered I have a lesion on my spine, which is complicating the diagnosis. Because it might be an indication of Ms. Isn’t that lovely?” {No MS…but it was also an indicator for Transverse Myelitis!}

“The next procedure that was done was the Spinal Tap, which wasn’t painful at all in my drugged up state. They roll me up in a ball as tight as they can. Which is really hard based on the lack of mobility, especially on my right side. They sent some some of the spinal fluid to the Mayo Clinic to have it diagnosed. No MS”
I didn’t mention it on the gizmo, but about that time they started me on IV steroids for several days.
“The next treatment that began was plasma transfer or PLEX, and that started on Friday. That involved putting what they call a catheter down the carotid artery in the right side of my neck. It’s got 2 little ports and what happens is on one side they’re flushing plasma out of my body. On the other side, they’re putting new plasma into my body, and so they get about 20% of the plasma each of the 5 treatments. When they’re done you’ve had ‘an oil change’ of your plasma. Each procedure takes three hours. It addresses both the Guillan-berre and this other one, which I guess I’ll keep calling ‘the other one’ until I get can remember it.”

So those are the treatments: IVIG, spinal tap, IV steroids, IV antibiotics, Plasma transfer.
But how was I doing? The gizmo was no help for that first week. Fortunately Shelly set up a Caring Bridge site on Friday the 22nd and wrote about it there: “He can move his left hand now and has a very strong grip! He is feeding himself, taking a drink of water, and brushing his teeth with his left hand. He can pick up his left leg and wiggle his left toes. He can move his right hand, but not his right leg. With help, he was able to sit up on the side of the bed twice.”

For the first few days either Shelly or my sister Paula fed me and brushed my teeth. Four days in I was able to pick up a fork and a tooth brush in my left hand. Shelly or Paula slept every night on a couch while I was in room 849.

She also wrote: “He gives the nurses, the aids, and the docs his personal recommendations for music and tells all kinds of stories.”

All the rooms on the 8th floor were large and private. Mine had a great view. I saw lots of sunrises (I wasn’t sleeping well) and moon rises.
I had Shelly bring my laptop (with it’s thousands of songs) and Bose speaker. She had to operate the laptop to launch the playlists. (I didn’t touch a keyboard for almost 6 weeks.)
There were “concerts from” playlists from several years of bands I had seen that particular year. Several were 6 or 8 hours long from years when I saw 50+ shows and went to a few festivals. The staff started calling 849 “the party room.”

They did that even when they were responding to me pressing the call light when we thought I might have had “an accident.” Losing feeling from the mid-torso down also meant that I had no control over my bowels. (Smell was the deciding factor re pressing the call button. I had a catheter, so urinary incontinence wasn’t an issue.)
As if that isn’t TMI there is this: I’ve often told people that if I had 1000 bucks for every individual who wiped my ass in Room 849 I’d be able to buy a new Lexus.

I had some visitors. (I’m sure tahe some of them were freaked out!) I made and received a few calls toward the end of the week. Shelly read me the comments on Caring Bridge or comments to her FB posts.
I had lots of Jimmy V moments: I laughed; I thought; I cried.
I really am a lucky old coots with old friends and many that I’ve made since moving to MO in 2011.
And so ends week 1 of “the other one.” In week 2 the words “Transverse Myelitis” became indelibly etched into my memory.
*IVIG= “Intravenous immunoglobulin (IVIG) is a pooled antibody, and a biological agent used to manage various immunodeficiency states and a plethora of other conditions, including autoimmune, infectious, and inflammatory states. The ultimate goal of this therapy is to normalize a compromised immune system.”

It still doesn’t seem Real!?!

Eight weeks ago, on September 18, I woke up in the Critical Decision Unit at Cox South Hospital in Springfield, MO.

I was paralyzed from the shoulders down.

I could move NOTHING.

As I tell the story, as I see my body that morning in my mind’s eye, and as I type this, it seems like a dream. A very, very Bad One.

But it was/is Very Real.

The day before had been a normal Sunday. We’d been up late the night before. Six bands kicking of Drury University’s 150 year Anniversary. Our first time seeing the Ozark Mountain Daredevils. Late night eats at IHOP. (No place in town to get midnight pie, so I had to settle for pancakes with strawberries and whipped cream.)

The 17th started with a quick stop for Shelly at the library while I washed the car with a wand across the street. Then grocery shopping.

At 2pm or so I grabbed a snack and settled in to watch the KC Chiefs with the announcers muted and Jason Isbell playing on the stereo.

As I was about to sit down it seemed like I had stepped on something. I rubbed the carpet. Nothing. I had vacuumed the day b4.

The ball of my right foot felt funny.

Half an hour later it was the same thing with my left foot.

I took a short nap after the game and didn’t stand up again until 5 when I put my shoes on to go for a short walk and to check on my garden.

My ankles and feet felt tingly. Pins and needles.

I cut my walk short.

As usual I called my 97 year old Dad at 5:30.

After the call I headed for the shower…and admired Shelly’s strawberry rhubarb pie.

(I never got a bite of it. It was 38 days until I was back in the apartment.)

In the shower the soap in my hand felt weird against my body. (I still can’t find the word for this sensation…which continues in my lower arms and from the waist down. “Weird” sums up this nerve pain…)

I knew something wasn’t right.

I cut my shower short and told Shelly that we needed to head for the ER.

My walking was getting shaky as we headed for the elevator.

{We almost always took the stairs in our 3 story building.}

Shelly got the car as I sat on a bench out front and waited for her to drive us the 1.4 miles to the hospital.

She walked me inside Cox South and quickly got me into a wheelchair.

Surprisingly the ER was almost empty.

The computer system was down.

It took 15 minutes to get a bracelet.

{You don’t got anywhere in a hospital without a bracelet.}

The delay didn’t matter in the long run..but it was frustrating.

Not too many minutes later I was being evaluated by a Nurse Practitioner.

She checked to see how far the “pins-and-needles sensation” (aka Weird) had advanced up my legs.

I squeezed her fingers. My hands were strong.

When she asked me to push her hands, I almost knocked her off her feet.

We both laughed.

That was the last thing I found funny for awhile.

They moved me to the Critical Decision Unit.

You feel like you’re in the hospital (you’re in a gown and you have an IV), but you’re not admitted yet.

They whisked me away for a CT scan…and after that things get murky until I woke up, so I’ll rely on what Shelly tells me.

But I sorta remember the 3am MRI. It should be no surprise that I had been in that godforsaken tube for only a minute b4 I pressed the panic button…and not just because of my intense claustrophobia. I knew that something was very wrong and I was scared.

After being told that I was being admitted Shelly made a quick trip to the apartment to grab a few things. She notified my sister and let her know what was going on.

When Shelly got back 30 minutes later I was thrashing about with muscle spasms in my arms and legs. (That was the last time they’d move for several hours.)

She went looking for someone for help.

I was hollering repeatedly I’m gonna lay here and die!!

They gave me some medication to put me to sleep.

I’ve already told you what happened when I woke up…this is the start of this adventure.

Part 2 in several days: My time at Jared Neuroscience.