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.
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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.
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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.
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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.
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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.
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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.