Nursing Home on The Range: Happenings

October 13th, 2931

Nope, that's not right.

October 18th, 2021


Topical

Due to recent self generated turmoil, I am not sure how to approach this blogging effort. I've yet to parse out parameters. Erect boundaries. Or forge an outline. I mean, what can I safely discuss that's not embarrassingly honest?

Relationships

Ha! Well, I'm no idiot. I get it now. Bad idea. I can save those intimate discussions for my roommate, Jeff! You see, Jeff and I have an understanding now. Yes, we really do. He understands that I can help him, and recognizes that I've now helped him time and time again, advocating on his behalf. Go figure!

Has he quieted down?

Well, yes. A bit. Instead of an overwhelming 130 decibels generated, lasting twelve hours consecutively, he's pumping out a far less irritating 110 decibels. Plus, he now features intermittent napping, at no extra cost!

They upped his drugs.

It seems secretly sobbing within earshot of a male roommate is a near impossibility. How do I know this? A couple of days ago (while speaking in weird uncomfortable tones) he offered me relationship advice. His words were clearly heartfelt.

"Blank blank blank blank blank and blank…"

And then there was something about not worrying about it, 'cuz everything gonna workout. So I stopped worrying about it. Really, he absolutely tried, and I thanked him kindly.

I Cheated

Yes, I cheated on you guys. Yesterday, my brother-in-law texted, asking me if I wanted access to something called FuboTV. I responded that I didn't. So he asked me why. And I texted the following: The noise be bad loud very bad here already!

He's from Tennessee, so he easily picks up on my slang-worthy intentions.

And then from him -

"I just ordered you earplugs. Where should I send them?"

Ugh. I fell for the trap. He tricked me. And now, less than 24-hours later I have earplugs underneath earmuffs. Now I am mostly suddenly calm. I can barely hear my neighbor across the way, their televisions, nor the guy who cries "help me" every 20 minutes or so, without fail. But still, them barnyard animals from Jeff's video game persist. Muffled now, at least. So mostly what I hear are my own ears ringing, which I am quite used to while embedded in quiet.

She Sing, She Do

Then there's this. My just turned 100-years-old neighbor consistently bellows out full-throttled monotone vocalizations long into the night. Imagine Janis Joplin's voice spewing forth, with no real words. No real form. Just ceaseless bursts of enthusiastic garbled low-end crackling noise.

And this time she's been at it for the past 97-minutes, with nary a break. Crazy decibel levels, too. I hope she's not in pain, or overly distressed. I hope that's not the reason why she sounds the way she sounds, or the reason why she's doing it.

There's no real possibility of sleeping through this, but otherwise, I appreciate how powerfully she rumbles and grumbles.

A Psychiatric Holiday

A stranger entered the room. A woman casually handling a large McDonald's Orange Drink.

Memories awakened. I liked her already.

When I was 14, my mother used to stop off at McDonald's on the way home from work (on a near daily basis). Her objective? ...Pick up seven hamburgers (only onions), a large fry, and an Orange Drink for her son to devour. Back then, I required easy calories faithfully served. Now, it's simply ears listening. Or an occasional nod from a pleasant passerby.

So, the stranger sat close to me (which I appreciated), and we talked for an hour and a half. Then eventually, the lead psychiatrist came in. It turns out, he's the proverbial master of ceremonies. I'm not much on ceremony, but any master of anything intrigues me.

"You need to talk to THIS guy!" The Orange Drink-drinking Psychiatrist #2 insisted, while pointing at me.

Then I realized.. Gee willikers! I was THIS guy. And he was THAT guy. Then I wondered aloud, "Where the heck is Marlo Thomas? We need an officially designated THAT girl!"

As it turns out, each of them was perplexed, if not fascinated by my case. And they each seemed far more medically inclined than any regular, run of the mill physician I've encountered in the past half-decade. Somehow, they asked the right questions. Not all of them, mind you, but the one's I would ask myself, having had their educational background.

Most importantly, they suggested a nurse should do a blood draw soon-after having completed the dreaded Commode Event (which is something I've been trying to orchestrate for several months now) in order to make additional determinations.

They suggested many other options and introduced reasonable theories, many of which have appeared within posts throughout this forum. So that's that. And they'll be back for further in-depth discussion as time passes.

Dirty Windows

I saw outside a bird in flight come crashing, come crashing it did with authority and verve…

Hmmm… what do you think of that?

Double Lockdown

A few nights back, one of our own tested positive for Covid-19. They wouldn't tell us which staff member it was, besides mentioning that she'd been in our room overnight.. which left My Favorite Nurse, and/ the Indistinguishable CNA as the only possibilities.

The Nurse was in here for 30-minutes, helping with my formula replacement and a bandage change. Yikes!

The CNA? She took my pulse, then headed out the door. Twice.

After many swabs deep into our nasal passages throughout the live-long day, we came to know our truth last night. It was the CNA! ...with the lead pipe, in the vomitorium!!! Good news for us, not so good for her.

So, the whole time I've been here, we've been out of lockdown for only 12-hours. And this doesn't matter for me, except that Jeff cannot leave the room (as he did, ever so briefly, the day prior). And those 27-minutes alone were nice for me. Only a week left on this lockdown.

Hoist Me Up

Today's debacle? They once again tried to weigh me, utilizing the Hoyer Lift. And I repeatedly repeated why doing so was an impossibility. Muscle activation total suffering post-lift PEM head too heavy to hold up on my own pressure muscles strained stretched burn------.

Twenty minutes later, they came back, acting as though we'd never met, nor even discussed anything having to do with weighing me on the darned Hoyer Lift.

So this time, my frustrated-for-me roommate told them to f*** off, imploring them to leave me alone.

And they did. Finally. For several hours.

Of course, my urinal is now overflowing, yet my cup runneth dry.

Punish Me, from Above

I made her cry. My nurse ------ blank blank blank

Hmmm. This is tough. I cannot bypass all emotional content here, not entirely. Half of everything that goes on here is born out of emotion. Yes, it appears as though I require an editor! A Content Approval Editor.

Someone close to me used to do just that. Edit me. Keep me safe. Protected in that way. But she's unavailable for the foreseeable future.

I'll try again with the story, but I may seem to be a total assh******* here:

I made her cry. My nurse.
My response and actions pushed her over the edge.

Jeff had been mercilessly ripping on her a bit earlier, cruel mean words on top of crudely aimed missives. I offered the nurse several smiles and a series of thumbs ups (thumb ups?) as she came and went about the place.

Not too much later, my nurse came back into the room with a box of feeding formula. I'd run out. I'd been running on pure tap water for a bit. So what happens next, will make you angry as a hornet caught up in a beehive hairdo!

Well, the order came in all wrong (as I suspected it might) and instead of my Kate Farm's feeding formula, they ordered a pediatric Nestle product.. You know, Nestle.. the candied corporation that specializes in making milk chocolate products. With milk, milk proteins, casein, recycled cow utters, shredded pieces of cowbell.. The Works!

*I don't do dairy

In a moment of frustration, I dropped a couple of f-bombs. And was about to throw the offending formula bottle through my bullet hole riddled wall, when my nurse began crying. Out loud.

F***! I wasn't really going to throw it through the wall. I swear.

I quietly apologized and motioned for her to come towards me. She shook her head and pointed, indicating that my roommate was to blame, not me. I took hold of her hand and apologized some more. Dammit. I'm supposed to be the good guy.

My frustration was all about everything here being so often wrong. My not being able to attain proper nourishment…

That outburst occurred three days ago, and ever since then the nurse has been opening up to me about her worldly frustrations. Which is good. And for her, completely, obviously, necessary.

There's a price to be paid for reacting and not thinking. Or writing and upsetting.


It's now 4:44am and my legs are partially numb, unmovable muscles slow burn, hips badly ache. What is this? Happens every so often. Probably common.

Take care,
Howard


This is what it looked like when my roommate left the room, in between lockdowns... room dividing curtain pulled back!!!:

20211013_105131_HDR~2.jpg

Comments

I"ve stopped by.....how surprising.

Busy around there it seems.

"There's a price to be paid for reacting and not thinking. Or writing and upsetting."

It seems like these events, and reacting (understandably, because your a human being) generated a positive outcome- your now sharing with the nurse.

By being vulnerable, wise, amusing and insightful, it seems you may soon find yourself voted Most Popular and Most Likely to Succeed or something. You might need to hang out a sign, yourself, and start charging.

It feels like you reside in this entirely unique personal Space, and these folks are appreciating it.

Seems like they can really get behind this project, Help Howard.

How do you help the 100 year old (in the next room?). Be kind, make them confortable, do your best. Or Jeff, thrashing. (up his meds).

But YOU Howard represent a true challenge. You triggered everyones' creative juices it seems. And I see no reason for you to fear the shrinks. Your fully capable of keeping them in check, while mining any benefits therein. They are sometimes good at neurology.

So that was really funny- how odd to discover One is the focus of Discussions being had by Others. You are THAT GUY.

I entirely erased my first response to somebody in PR this morning. EGAD, don't say that. NO its ok, say that. No Wait Don't. OH OK.

Regarding the dirty windows- well they are't dirty enough, if a bird crashed into them.

Since birds are more important to me, than windows, I"ve had dirty windows and odd things like tropical fish stickers stuck to them to deter Careening.

The great horned owl was looking straight down following its targeted prey, and slammed straight into my downstairs huge window. Kabang. Scared me about to death. The owl was OK. Thank goodness.
 
somehow I missed the attached photo......

Oh: the window- Oh, is that a bush outside?

Seems like one person gets far too much window and the other may get no window. Thats a lighting disparity. Thats unfair.

I think these lockdowns are somehow Not Ok. Solitary confinement. I thought you had to be convicted of something first.
 
Hi @Howard.....Another day and it's good to have you with us. Yes, you did have the dates mixed up a bit, but who doesn't?

I'm glad that you and Jeff have become compatriots (of sorts), that's immensely helpful. If you can talk to him and get a male response that's good...more power to you! I understand that you don't want to go into that territory again.

Has it occurred to you that all of those McDonald's hamburgers (with onions) may be stuck somewhere in your digestive track. And those orange drinks...why does anyone think they're good?

See, I knew that earplugs would help keep the noise levels down. It sounds like the 100 yr. old needs to be moved on down the hall or something. Let someone else enjoy her for a time. But then you may get an all night screamer, so scratch that comment.

Now if only you could play that barnyard game with Jeff. At least you'd get even with everyone else making noise on the planet.

Yes, I agree with @Rufous....a group of doctors with their heads together, even if psychiatrists (they really have to know the human brain and are M.D.'s) is a very good thing to have. You're one huge puzzle and it takes more than one doctor to put the pieces together. Heck, you may as well be at the Mayo or the Cleveland Clinic...the doctors come to you, you don't have to visit each of them individually. Plus they're together and hear the story straight from you. Very important since most doctors today don't ready the incredible no. of info sent to them. So really think of any questions you have, answers that may be....just be open.

I agree that you can handle anything asked of you. That brain's good and I'll bet it knows some impressive words.

Sorry that you were exposed to COVID.....so glad it wasn't the nurse who came in with your feed. And the brand you need is something that may take a whole lot of time for you to convince the staff of. Someone over them is always saying, "No, we'll just use what we already have."

Good that they're doing a blood draw right after the Commode Battle. It's about time as that's when you're at your weakest. Maybe you really do need those McDonald's hamburgers after all. And a waitress with a beehive hairdo. You know they used to wrap them in toilet paper to keep them looking good. A bit of trivia there.

Can't Jeff be a little nicer to the staff? They're only trying their best and the ultimate outcome is that they'll avoid your room altogether. Or does he have a good reason for being upset? Maybe they'll up his meds again....whatever's needed.

I don't think you (or anyone else, including her husband) would recognize Marlo Thomas these days. THAT girl is definitely unrecognizable. She was darling back then, wasn't she?

OK....no parting shot. I hope you get some rest. Those earplugs will help but don't lose them. Yours, Lenora.
 
Did they say what they are going to try to find out from the blood test @Howard ? It's interesting they want to do it after you have exerted yourself. Testing lactate levels maybe?
That's a good question. I've been trying to determine this myself over the course of many months. My aim is to test for myoglobin, creatine-kinase, lactic acid, then note any hypoxia. UA also for myoglobin.

It typically takes 15 to 20 minutes before I feel as though I've been hit by a truck. However, my recovery time is a matter of hours, versus the typical days-long recovery others experience with this illness (Myalgic Encephalomyelitis) post PE.M. At least, that's how I understand it.

I should probably create a separate thread, so that I may query the folks who better understand these sorts of things.

I've not been able to speak with the doctor on this yet, however, the psychiatrists are gung-ho about my experiment. I have no idea how often we actually see a doctor while we're here. Once a month, once a year, not quite sure? There's nobody to ask. Everything that happens here is a surprise. So at least there's plenty of excitement here, versus at home. :)
 
However, my recovery time is a matter of hours, versus the typical days-long recovery others experience with this illness
Yes that does make your symptoms quite different from most here.
I've not been able to speak with the doctor on this yet, however, the psychiatrists are gung-ho about my experiment. I have no idea how often we actually see a doctor while we're here.
Well the Psychiatrists should have a good grounding in general medicine so would be able to answer any general medical questions you have. It's encouraging to note that despite the fact you are exposed to a lot more stimulation (staff coming and going ect) you have'nt suffered for it. (Much!)
 
However, my recovery time is a matter of hours, versus the typical days-long recovery others experience with this illness (Myalgic Encephalomyelitis) post PE.M. At least, that's how I understand it.
https://www.cedars-sinai.org/health-library/diseases-and-conditions/m/mcardle-disease.html

I was going to mention McArdle's the other day when we were talking about Rhabdomyolysis because that site I quoted said, "Several inherited genetic disorders, such as McArdle's disease and Duchenne's muscular dystrophy, are predisposing factors for the syndrome."

When I've read about McArdle's in the past I've been amazed at how similar it is to ME/CFS with the exception of PEM. People with McArdle's get a second wind. PwME don't.

I didn't realize you recover from PEM so quickly. Second wind????

@SmokinJoeFraz93 talked about it here: https://forums.phoenixrising.me/threads/glycogen-storage-disease-type-5-mcardles-disease.82339/
 
Very happy to see your new blog post, @Howard.

Much of it made me laugh my a$$ off, and that's saying something because I feel just awful today.

I appreciate hearing about all aspects of your new living situation, medical care, interpersonal interactions, innermost thoughts, etc., but I must admit that I am now especially intrigued by your evolving relationship with Jeff!

I love, love, love that he apparently scared off the group of folks that insisted on weighing you.

Oh to be a fly on the wall of your room, but I suppose reading your blog is the next best thing.

Practical notes:
1) In 2020, I was placed on an exam table that had the ability to weigh patients! It added a couple of pounds, but I appreciated the ease of use.
2) I recently had an MRI, and upon laying down in the MRI table, the machine calculated my weight. Neato.
3) Perhaps in the coming months you may find yourself in a situation where you can be safely and more comfortably weighed, and report back to the nursing staff. 🤞🏼
 
When I've read about McArdle's in the past I've been amazed at how similar it is to ME/CFS with the exception of PEM. People with McArdle's get a second wind. PwME don't.
Thanks. I do not believe this is quite on the mark, if only because it's implied the symptoms begin by age 15. Unless I differ in that and other ways. The part about the glycogen storage issue makes sense though.. maybe something similar.

It is worth mentioning
 
I feel just awful today.
I'm glad you got something out of this. Sorry you are having a rough day. Try to stick to rough minutes, or a couple of rough hours instead the full day experience. :)

Re: weight

They did weigh me on a table prior to my MRI once.. but it seems as though only one of those Weighing Tables exists in Arizona. I may have to head (further) west!
 
Heck, you may as well be at the Mayo or the Cleveland Clinic...
Ha. I did the Mayo Clinic tour out here in 2012-13. And they put me on their G.E.T. program.. which failed spectacularly. At least their facility was nice. And the staff (who explained there was nothing really wrong with me, besides P.O.T.S.) were generally pleasant. :)

The Mayo idea made sense at the time.
 
I was just going to mention pots.
I saw a good talk yesterday,
if you’re up to it, I’d like to try to post a link here? For you?
IF the blood tests turns out with nothing,
as far as I understand, your problem might be connected to pots…
I’ve read about pots before, but now I understand more of what part of my problems might be connected to pots.
He’s American, the talk was held online after request from the Norwegian me-society.
He’s not difficult to understand.
(By the way, he mentioned ssri as one of several options to fight pots. But I don’t remember why)
One of the things I noticed was that this drop in blood pressure might be delayed with 20 min …
 
I don't seem to have POTS symptoms as I used to, but not being upright all that often I'm not quite sure. :)
I had just assumed your inability to be upright was tied to POTS or OI or CCI some variant of that.

My POTS got very acutely bad during my three month vacation to see my daughter, during which I got MUCH worse PEM for months. Lots of tachycardia.

Me wearing compression socks.

It was scary.
 
I had just assumed your inability to be upright was tied to POTS or OI or CCI some variant of that.

My POTS got very acutely bad during my three month vacation to see my daughter, during which I got MUCH worse PEM for months. Lots of tachycardia.

Me wearing compression socks.

It was scary.
That's unfortunate. :-(
Mine is more or less about weak neck muscles now. Deconditioning. Though I cannot be certain.
 
Thanks. Yes, that's okay. I don't seem to have POTS symptoms as I used to, but not being upright all that often I'm not quite sure. :)
It’s not posted yet, it seems.
I’ll get back as soon as the link is available.

I can’t tolerate to sit upright for long,
and I don’t tolerate compression socks (as I suppose you don’t either)
But another suggestion from the doctor was to have a …
(What’s it called?)
6E42B2C4-1736-462F-9CE1-62B02AF5DBE8.jpeg
“keep your knees above your hips”

(I really don’t know how easy it will be for you to use one of those while using the commode,
and of course, I don’t even know if it will be more trouble than help,
and above the hips might not be possible, but I guess anything to lift the feet from floor -level might be helpful. )

But of course, blood draw first, im curious about that one.
 
Ha. I did the Mayo Clinic tour out here in 2012-13. And they put me on their G.E.T. program.. which failed spectacularly. At least their facility was nice. And the staff (who explained there was nothing really wrong with me, besides P.O.T.S.) were generally pleasant. :)

The Mayo idea made sense at the time.

I actually wouldn't recommend the Mayo Clinic because I've known too many people who have gone there and the neurological dept. is really not good. I only mean that you had so many doctors entering your room.

I wonder if the Barrow Clinic in Phoenix would be of any use to you....work on the same basic principle, use a team of doctors and I actually sent my sister there (after failure at the Mayo) and they were able to figure out (after a very long time) what was going on. I honestly don't know what their standing in the neuro community is today. Yours, Lenora.
 
I can’t tolerate to sit upright for long,
and I don’t tolerate compression socks (as I suppose you don’t either)
But another suggestion from the doctor was to have a …
(What’s it called?)

“keep your knees above your hips”
I glanced at this, and decided folks were discussing foot stools for toilet use.

It should have been me, who came up with that Shark Tank toilet stool. Only I would not agree to- make them in China.

I can't live without my footstool. The same one, black plastic, folding, with white dots, looking sort of like a domino- resides in the halls of Congress. I saw it the day a fake chicken testified.

Mine lives in the bathroom, and creates some comfort otherwise missing for those of us who are shorter.

I had not considered using it for the "Feet Up" POTS issues. Might try that.
 
Mine is more or less about weak neck muscles now. Deconditioning. Though I cannot be certain.
one of my many theories is Big Head small neck. Women's hats never fit me. I do have alot of hair.

Does the j-tube mean moving around is impossible? (I don' t really know).
 

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