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
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