Friends Inside, and the Nursing Homes Most Unwanted

90% of Everybody Here

I have a new friend. His name is Federico. He's a guy. A male. And there aren't many of those here. As it pertains to employees, an easy 90% are women, if not more. And male residents may be outnumbered at an alarming ratio of 3 to 1, but I'm less sure on that one. Either way, males are the minority.

And that's where Federico rolls in. Literally. You see, he's got one of those souped-up wheelchairs, the kind where you can reposition and roll at just about any angle or in any direction.

He's been chatting me up with some frequency. Mostly it's mid-morning when he approaches, but sometimes it's later. My only problem with him initially, was that he wouldn't stop talking. Normally, I can handle up to an hour or two (in the relative quiet), but when I'm suffering from P.E.M. … saints be to heaven's! And the very first day was one of those days. At least he has an interesting back story.

Yes, his Spanish accent is strong, but it doesn't make his speaking indecipherable to me. In any case, he told me his life's story straight off, from start to finish. The highlights? A car accident back in '97. Quadriplegic. The assumption was that he'd never have use of his limbs or have movement from the neck down. But he's persevered and pushed. Now he can move his upper limbs and gyrate from the mid-torso area upwards.

Clearly, this guy is a fighter, as he works out every day (either with stretch bands, or other specific objects he manipulates with his fingers) hoping to regain usage. He also visualizes muscle movement, while sending mindful nerve pulses to his extremities.

And here's the thing, he tells me that I inspire him. Weird, huh?

Sure, I'm always moving or stretching or turning from side to side, but my movements aren't all that difficult (in moderation). Apparently he enjoys my motivational meanderings, whereas, I readily approve of his workout strategy… and am jealous.

Strings

So, despite not having use of several fingers, Operation Ukulele is almost up and soon to be running (everyone here gets a $119 a month allowance, so he's waiting on that to clear.. I don't get any money, because it goes to child support, which is no big deal). Anyway, there's a plan. I do not specifically know how to play a ukulele, but with only four strings...

Wheels

And then, Federico comes to me this afternoon with an idea. He actually tried approaching me twice earlier, but I kept falling asleep on account of.. many things. Mostly though, today's P.E.M. was especially fierce. On days without, I am quite pleased with the universe's offering.

Eventually, Federico caught me half awake and proceeded to explain an all-new strategy for me to incorporate, something that would help me match his independence.

"We need to get you some wheels."

Huh. Never even considered it. But here's the thing. A specialized chair like his can lay flat, or nearly so. And I could roll in that manner. He then demonstrated all kinds of ways that I could adjust the chair to meet my specific needs.

Hmmm… I think I may pursue this. Why not?

Now, I cannot be upright (well, perhaps I could very briefly, getting into position), but at least I could get places on my own, in and around the premises as I chose while laying mostly flat (if I could work my way out of this tiny room).

The other thing too, is that Federico also got left behind. So he understands. I don't have to say anything. He knows.

Sharing

Colleen came around later, and we discussed things. That included roommate problems. She's got similar issues, and similar complaints. Yes, my roommate problems are thankfully, far less pronounced, but occasional irritations still exist. In all actuality though, Jeff has been much quieter of late (sleeping 14-hours a day/night helps). And he's using his headphones far more often. Plus, with me being outdoors for nearly seven hours a day, he's got the entire room to himself.

Bad Sorta Things

So Diane wheels up to me real close out there on the patio, and I almost think she's going to roll right into me. I hadn't really spoken with her before, so I didn't know what to expect. But the thing with Diane is that she's got problems, across the board. And when she speaks, there's always this pained expression, a sort of obvious desperation at work. Each word, an unanswered cry for help.

Of course, I listened intently to each and every one of her problems, before she switched gears, suddenly deciding to recap her recent life history.

She's had a lot of history being here and there chasing down demons who were chasing down ghosts who were after her abused daughters. Most of what she says is not good, not good at all. And that seems to be a common theme here with each of the residents.

So, it seems as though this is what happens to the people who are unwanted. We get placed in places like these, where there are no visitors. No phone calls from family. And really, just not a lot of caring from the outside.

But the thing is, most of us have likely put ourselves into this situation after having made a series, or perhaps even a lifetime's worth of poor decisions and choices. I sure have. Are their exceptions? Sure, there must be. And maybe my sampling of residents is nonrepresentational. But I suspect the picture will become clearer as time passes. Still, we all seem the same.

Anyway, and as I've mentioned before, I am built for this. Struggle and opposition have always been my thing, my life up until now. But it seems I am slowly gathering allies. Positive outcomes are becoming more common. Online support exists, and is appreciated.

I'm just down right now. Physical distress does this to me. Emotional turbulence. Various forms of unspoken rejection. Today I've stepped on landmines. I've somehow seemed to hit them all… boom, boom, BOOM!

Wait Weight, Don't Tell Me

I'm gonna run straight water overnight, hoping that flushes away the bloat. Increasing my tube fed caloric intake seems to have been a mistake. My intestines can only handle so much. I may be destined to continue losing weight unchecked. Fine. Whatever.

Oh, and if anybody knows of a surefire way to get rid of excessive bloating, please do share. I'm suddenly having A LOT of issues - difficulty keeping my feed running, excess bile leakage, stoma burn, heart palpitations, esophageal inundation (fluids backing up), etc.

And now here I am asking for a favor. Ugh.

I need simethicone (typically found in a product like Gas-X). I think. Darned near immediately.

The problem? Last time I had it, there was likely gluten in the product, which led to my throat partially closing, which led to probiotic capsules becoming stuck… which put me in ER and then eventually led to my getting the feeding tube that saved my life! So hooray for happy endings!

I need to be ABSOLUTELY certain that there isn't any gluten in whatever product is sent (or recommended) to me. That may entail somebody calling the manufacturer directly.

Does anybody want to do this for me?

In return, I'll write you a crappy poem, or name a song after you (well, your Phoenix Rising alias). I am just plain burnt out in regards to my self-care responsibilities here, and out there (with my mother).

Tiny Tiny Matters

I fell asleep around midnight, patiently waiting for my formula bag to be changed out, while also waiting to receive assistance so I could clean my stoma and change out my bile-saturated bandage.

Help never came.

At 215am my bag ran dry. Or perhaps it was much sooner. I was modeling my industrial strength earmuffs. The repetitive beeping came to me in a dream.

Anyway, I completed several related tasks on my own, dumped the last 200ml of water into a new feed bag, and tried getting back to sleep around 315am.

And I couldn't quite get there, especially since all of the lights came on around 4am. My roommate needed tending to. Meanwhile, in the midst of this tending, the CNA and he discussed things. Back and forth the words went. Perhaps the words were necessary. Instructional. Either way, I couldn't know. So being further irritated by things, I fired up my tablet, put my earphone in my earhole, and blasted some technical doom death metal grunge music into my brain, hoping to obliterate the universe.

As I am writing this now (517am), clearly my efforts have failed. And I've only got 37 minutes worth of water left.

What Now, and What Next?

Later This Morning: stop by the nurses station (have someone push me over there) and ask for someone to take a picture (with my phone) of the instructions regarding my feeding tube. And then, if instructions do exist, determine what it is they say.

Also, if the nurses are charting me, how are they explaining away the fact that I am not receiving my formula overnight?

Oh, I flagged down the CNA. Now I have water! Happy Hydration to All!

Take care,
Howard

Comments

I would offer to obtain the stuff you need but I"m in a location that lacks most forms of normal shopping and normal selections.

But if just ordering it at some online place and getting it shipped to you- I'm happy to do that. If I know exactly what it is.

You indicated you'd never considered wheels when I swear that was under discussion some time ago (that a possible you could get. reclining wheel chair).


Frederico sounds like a wonderful fun new ally, with skills in the dept of changing locations. It must be so nice to have somebody to share these types of things with.

I spent a fair amount of time, making visits to where my parents were, which was a veterans place. It was 95% men, so I got really used to thinking thats the scene- all these men.

So duh, thats right, its mostly women finding themselves on their own later in life.

Told my husband the other day I wished I had a friend. (I don't really have any local friend). He seemed a bit taken aback, suggested he thought he was serving that role.

I apologized for bothering him alot. He reads, and I bother him.

He has been a bit more indulging me with some attention, since that happened.

Otherwise its the beige walls around here......
 
You indicated you'd never considered wheels when I swear that was under discussion some time ago (that a possible you could get. reclining wheel chair).
Yes. That's correct. But in a motorized wheelchair I'd be able to move about on my own. In my former home, I didn't have the necessary help, nor the available room to execute maneuvers.

I'm still not absolutely sure this would work, but it just might. :)
 
But in a motorized wheelchair I'd be able to move about on my own. In my former home, I didn't have the necessary help, nor the available room to execute maneuvers.
Yes I would imagine it would have been tricky and difficult in a small space and now you have some turf that can be patrolled. Others to possibly visit with.

Regarding those visits with Fedrico, it seems you could convey to him that you get worn out easily but you really enjoy visiting so maybe just set a limit for yourself....
 
Thanks for another blog post. I look forward to them, and what a treat to get three days in a row. Oh, but I just wish you could get your needs met there. I hope you're feeling better, and your spirits are up by now.

Here's a website I found of confirmed gluten-free drugs. If you go down to G, Gas-X is there.
Confirmed Gluten-Free Drugs and Medications - Celiac Disease (celiac-disease.com)

If you want, I could probably call them later to make sure of it.

Oops, they're closed today. Here's the number for the Gas-X company if someone is up before I am tomorrow. contact us at 1-800-245-1040, M-F 8:00 a.m. - 6:00 p.m. ET.

Contact Us - GSK Consumer Healthcare | Gas-X

There might be something better though, as Gas-X definitely has other bad ingredients, including food coloring. I can do some more searching later.
 
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Here's the number for the Gas-X company if
Thx. I think we have this covered now. I'm in the hospital because my heart rate wouldn't go down (after 5 hours), due to the severe bloating/pushing into my diaphragm, and thus, pushing underneath my rib cage. They've done a CT scan, no blockage, however they're trying to find gluten-free simethicone product...

Update: Which now they have. And my heart rate is down to 100bpm. Normal for me is 80. Once I drop below 91bpm's, the series of palpitations and discomfort ceases.
:)

The doctor is going to order a prescription for the simethicone products, liquid form, so I can put it directly into my feeding tube. Yay!
 
Hello @Howard.....Yes, a reclining wheelchair would be a great improvement on what you're on at the moment. Talk to Frederico about the best type to start with...not all are equal. e.g. The big powered models are downright dangerous for a lot of people and a lot of money is wasted on them.

Then talk to your doctor about a prescription for one. If there's such a thing around there, I'm sure they'll round it up for you.

The ukele, huh. Frederico could be Tiny Tim and you could play the role of Miss Vicki (and whatever happened to her). You'd have to take silk tulips with you wherever the two of you go, though. A good, happy thought at least.

I'ts not my place, but I'd start closing my eyes if I saw Diane heading my way. I'm sure the others know all about her, so you could do a personal check. She sounds like what I refer to as an Energy Vampire. Frederico sounds like a good guy and Colleen too, for that matter.

Too bad you didn't get much sleep last night. That's too bad about both you and the others being in there....but I had a brother who may have ended up in that position except for the fact that he had me. People do fall between the cracks, unfortunately. At the very least, surely you'll be allowed visitors once COVID is out of the picture.

Well, I'm glad that you explained how you ended up with a feeding tube. Do the nurses not come when you hit the call button...after all, it's there job to make certain that your fluids don't run out. Have a chat with the Dr. He may save the day. I see that @christiankatz came to the simethecone rescue, although the liquid form may be even better.

See, if you made your address know, you may get Santa to deliver things you need (or can be used for bribery) on his rounds. I wouldn't worry about a chimney. Happy thought: Maybe Jeff's daughters will bring something in for Xmas for you. Surely, they'll bring in a tree for Xmas & decorate it.

You'll probably have PEM again today, so I'll let you snooze the afternoon away. Feel better in a big hurry...and get that chair. Yours, Lenora.
 
Thanks for the help/comments/replies :)
I'm ok. As suggested, beat to heck. Increased heart rate taxing.
Simetheconme (spell it differently always( given to me to take home from hospital helped again this afternoon
Rcvd help offline, too. Product now ordered.
Help APPRECIATED!!!
 
I'm in the hospital because my heart rate wouldn't go down (after 5 hours), due to the severe bloating/pushing into my diaphragm, and thus, pushing underneath my rib cage. They've done a CT scan, no blockage,
Hi, @Howard

Just a little note to say I'm really sorry this happened to you. I'm sorry your HR was elevated for such a prolonged period (it's SO uncomfortable) and I'm sorry you had to go to the hospital to get it checked out. I imagine you will now experience PEM on top of PEM, and I hope each day will get just a little bit better.
 

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