Responses to (and updates for) those of you who've been following along from blog entry to blog entry.
And then also, brief background information explaining “how I got here” - in case anybody ‘new’ has happened along:
NOTE - Not new to the story? For your ease and convenience, please skip the next six paragraphs -
\/ \/ \/ \/
After surviving 755 days of nursing home living (and with improved physical energy / health), I moved out on October 29th. It was a momentous day - or so I thought.
I moved into the (unimproved) garage of my former wife's condominium, located directly beneath the property. My main objective (and my thinking) had lots to do with accumulating some semblance of wealth (enough money to possibly sustain myself going forward). And if not that, there was always the potential that I would get back together with my former wife. And if not that, moving out of a nursing home is the best decision to make, despite any and all other options!
Made Money
Because I was (seemingly) approved for SSI two months ago, I knew I would be receiving a monthly stipend (sooner than later). I remember correctly, money can be helpful. That's especially true in my case, because I've not had any discernible income in over a decade (I blame this miserable and seemingly unidentifiable illness).
So you know, the SSI has yet to come through - despite promises to the contrary. And then also, nobody else (specifically the entities that are supposed to be supporting me) have come through either.
Am I exaggerating? Well, a little bit. The caregiver thing came to fruition, so I get her two days per week. And my doctor people are finally taking me seriously, due to their sudden concerns regarding my physical state / ridiculous amount of weight I’ve recently lost. Not that it's been easy doing so. I had to endure daily diarrhea (going all the way back to the last day of October), which may put me in the Guinness Book of World Records.
Anyways, what these people do not know is that I spent many consecutive months (back in late 2018 and early 2019) weighing in at a gruesomely thin 100 lb (or less), despite being over 6 ft tall. Well, not over 6 ft tall, but EXACTLY 6 ft tall! There's no need to exaggerate, especially when the truth is stranger than affliction.
THE END
Yep, that should do it for the new folks on the block. Enough background for now. So now I choose to respond to those who have asked me specific questions. These are also the same people who have caring concerns, regarding my well-being. Thank you for both.
A friendly woman from Texas recently asked? “Are you making progress?”
Yes, progress is being made. That's exactly what I'm doing. After 36 consecutive days of diarrhea, I finally found a solution! I stopped ingesting the Liquid Hope feeding formula seven days ago, and guess what? Although it took a couple of days, there's been an end to intestinal hostilities. That's correct, a total stoppage!
I also cut back my fluid intake.
I know, that sounds counterproductive, but my objective was to rob my colon of excess fluid. You can't go diarrhea when you're slightly dehydrated. At least that was my theory. And that's also why I've been ingesting a fair amount of salt, intermittently. Sea salt, to be exact. And the idea is to draw out the excess moisture from my overactive colon.
With the stoppage of my feeding formula, I'm getting far fewer calories - yet enough to still function. As an added bonus, my caregiver found five (slightly expired) bottles of feeding formula, the old stuff. The Kate Farms Peptide 1.5. So I've been feeding on one of those each of the past four days.
All told, I'm taking in nearly 800 calories a day. Not ideal. But enough to keep me alive for some time - until someone finally does what they're supposed to do, getting me the goods I require.
While it's true I'm eating foods orally, the ones mentioned previously, but… there's physical pain involved (from time to time). Pain directly beneath my left rib cage - most likely related to a malfunctioning duodenum / compressed transverse colon — Long story full of unnecessary and unwanted explaining / reverse mechanical engineering.
I totally understand what's going on down there, but no one else needs to participate in my total understanding, nope, not at this time. As long as I know how my own internal logistics work, that's enough to keep me going.
Hmmm … now that I think about it, the only real advantage to knowing these types of things is that the medical people cannot so easily nor meticulously murder you!
In any case, I'm still trying to get them to send the feeding formula to me, but apparently it takes an inordinate amount of time to navigate logistical barriers, like this - days, weeks and months!
Oh, some more good news.
Experiencing ridiculously unnecessary amounts of intermittent pain (from having to eat oral foods of late), I decided to make a move. I decided to fix something that may have been broken / maladjusted….
By the way, I do have a nominal amount of codeine left, so I'm trying not to use any unless the pain is unbearable. And really, it's not that bad. I tend to exaggerate … like all the time. You know what I mean? Everything I say is an exaggeration upon another exaggeration.
Okay, I don't really do that. But I sometimes feel guilty for complaining about my discomfort, or for not having my needs that. I'm sure each of you experiences much the same day in and day out. I am not unique, in that regard.
Okay. I'm going to discontinue on that front.
What I did by myself was adjust the external bumper on my feeding tube. Why? Because I felt the internal balloon underneath was possibly compressed, or lodging itself into my under belly area. I won't get into graphic explanation here, but my effort entailed trying to separate the bumper from my gut.
And I think I did just that. There seems to be a few millimeters worth of separation now. Indeed. I pulled them apart. And I didn't do any permanent damage. I don't think.
I tried finding videos on YouTube, but there aren't any Jejunostomy materials anywhere, in any way, shape or form. It's all G-tube, all day, and all night long!!!!
Additional Answers to Additional Questions
My former wife comes down to visit me at night for an hour. Usually about 8:00 p.m. or so. And then I have the caregiver here on Tuesdays and Fridays.
As long as I'm not extremely ill, that amount of help works out decently.
Occupying Time (and Space)
I’m working on music composition, my never-ending songs, intermittently throughout the day. I also watch one Star Trek episode in the morning and then one in the late afternoon. I then also download new music and obscure from archive.org.
And that's about it.
Once I start feeling better, it's likely I will attempt to socialize again. Clearly, I can go long periods of time without much human contact - years on end, actually!
Why was your formula changed?
The formula was changed because I was having lots of pain in and around my stoma area - and without having been diagnosed, I had to do something. Anything.
Of course, this new formula creates other, and entirely different issues.
I've been trying to get back to the old formula for the past 30 days, so maybe something will happen soon. Or not.
Note: I had an online session with my all-new dietitian, and she said she'd do her best to get me a sample case of formula by next week.
That same young lady in Texas asks: Do you experience holiday excitement?
In regards to the holidays, we aren't a “visiting” kind of family. All among us are independent and capable of thriving / surviving on our own. It's always been that way. None of us wants to impose upon anybody else.
Although, if I'm able to regain my health to a certain degree, I shall indeed visit my mother.
Another commenter mentioned my former storytelling adventures -
Yeah, not much to write about when you're stuck in the garage all the time. And I highly suspect nobody wants to dive into my introspective thoughts, so that leaves me with nothing to write about except my continuing health concerns. Nothing is more boring than that.
Right now, I especially miss a few people in particular, from back at the nursing home. I've even had daydreams and running (imaginary) dialogue with them involved. I miss entertaining. I miss other types of specific means of engaging, as well.
And then of course, I miss my homeless friends. I miss the adventure involving their improvisational living. Their take and their situations - those sorts of things.
You Shall Be Tested!?
Regarding any and all tests, I've had pretty much everything in recent years, and none of my tests turned up anything besides confirming my severe gastroparesis.
The problem being, those medical folks are fully incapable of recognizing (much less identifying) the actual problems I'm having. Perhaps ten, twenty or even thirty years down the line, the medical community will acknowledge the exact problem(s) I am having… these common problems also found in others.
Well, they'll make these discoveries as long as there's money to be made. Or a loved one falls victim.
I am pretty much of the mindset that I need to fix my gut flora (expel the bad bacteria), and defeat my vitamin D resistance, in order to cure myself. I do not believe there are any current medications or known treatments that can help me.
Being out in the direct sunlight for prolonged periods of time is the only thing that's improved my overall physical state. And also, if I do not take probiotics, my condition notably deteriorates. Otherwise, that's it - which is better than nothing, far better than where I was a couple dozen months ago.
Oops! The side effect of asking me questions is that I write lots and lots of words in order to thoroughly explain things. I know that none of you need all these words, but it's kind of what I do. Heck, my sister's used to tell me I was exhausting… perhaps even difficult to endure - blaming The Depth of My Exploring.
So now, at long last, I shall explore no more!
Thanks for reading.
R. I. F. = Reading is fundamental.
Howard
it's not all black and white (unless it is)
Oh, here's a picture I took from back in the olden days, when I had a functioning camera:
And then also, brief background information explaining “how I got here” - in case anybody ‘new’ has happened along:
NOTE - Not new to the story? For your ease and convenience, please skip the next six paragraphs -
\/ \/ \/ \/
After surviving 755 days of nursing home living (and with improved physical energy / health), I moved out on October 29th. It was a momentous day - or so I thought.
I moved into the (unimproved) garage of my former wife's condominium, located directly beneath the property. My main objective (and my thinking) had lots to do with accumulating some semblance of wealth (enough money to possibly sustain myself going forward). And if not that, there was always the potential that I would get back together with my former wife. And if not that, moving out of a nursing home is the best decision to make, despite any and all other options!
Made Money
Because I was (seemingly) approved for SSI two months ago, I knew I would be receiving a monthly stipend (sooner than later). I remember correctly, money can be helpful. That's especially true in my case, because I've not had any discernible income in over a decade (I blame this miserable and seemingly unidentifiable illness).
So you know, the SSI has yet to come through - despite promises to the contrary. And then also, nobody else (specifically the entities that are supposed to be supporting me) have come through either.
Am I exaggerating? Well, a little bit. The caregiver thing came to fruition, so I get her two days per week. And my doctor people are finally taking me seriously, due to their sudden concerns regarding my physical state / ridiculous amount of weight I’ve recently lost. Not that it's been easy doing so. I had to endure daily diarrhea (going all the way back to the last day of October), which may put me in the Guinness Book of World Records.
Anyways, what these people do not know is that I spent many consecutive months (back in late 2018 and early 2019) weighing in at a gruesomely thin 100 lb (or less), despite being over 6 ft tall. Well, not over 6 ft tall, but EXACTLY 6 ft tall! There's no need to exaggerate, especially when the truth is stranger than affliction.
THE END
Yep, that should do it for the new folks on the block. Enough background for now. So now I choose to respond to those who have asked me specific questions. These are also the same people who have caring concerns, regarding my well-being. Thank you for both.
A friendly woman from Texas recently asked? “Are you making progress?”
Yes, progress is being made. That's exactly what I'm doing. After 36 consecutive days of diarrhea, I finally found a solution! I stopped ingesting the Liquid Hope feeding formula seven days ago, and guess what? Although it took a couple of days, there's been an end to intestinal hostilities. That's correct, a total stoppage!
I also cut back my fluid intake.
I know, that sounds counterproductive, but my objective was to rob my colon of excess fluid. You can't go diarrhea when you're slightly dehydrated. At least that was my theory. And that's also why I've been ingesting a fair amount of salt, intermittently. Sea salt, to be exact. And the idea is to draw out the excess moisture from my overactive colon.
With the stoppage of my feeding formula, I'm getting far fewer calories - yet enough to still function. As an added bonus, my caregiver found five (slightly expired) bottles of feeding formula, the old stuff. The Kate Farms Peptide 1.5. So I've been feeding on one of those each of the past four days.
All told, I'm taking in nearly 800 calories a day. Not ideal. But enough to keep me alive for some time - until someone finally does what they're supposed to do, getting me the goods I require.
While it's true I'm eating foods orally, the ones mentioned previously, but… there's physical pain involved (from time to time). Pain directly beneath my left rib cage - most likely related to a malfunctioning duodenum / compressed transverse colon — Long story full of unnecessary and unwanted explaining / reverse mechanical engineering.
I totally understand what's going on down there, but no one else needs to participate in my total understanding, nope, not at this time. As long as I know how my own internal logistics work, that's enough to keep me going.
Hmmm … now that I think about it, the only real advantage to knowing these types of things is that the medical people cannot so easily nor meticulously murder you!
In any case, I'm still trying to get them to send the feeding formula to me, but apparently it takes an inordinate amount of time to navigate logistical barriers, like this - days, weeks and months!
Oh, some more good news.
Experiencing ridiculously unnecessary amounts of intermittent pain (from having to eat oral foods of late), I decided to make a move. I decided to fix something that may have been broken / maladjusted….
By the way, I do have a nominal amount of codeine left, so I'm trying not to use any unless the pain is unbearable. And really, it's not that bad. I tend to exaggerate … like all the time. You know what I mean? Everything I say is an exaggeration upon another exaggeration.
Okay, I don't really do that. But I sometimes feel guilty for complaining about my discomfort, or for not having my needs that. I'm sure each of you experiences much the same day in and day out. I am not unique, in that regard.
Okay. I'm going to discontinue on that front.
What I did by myself was adjust the external bumper on my feeding tube. Why? Because I felt the internal balloon underneath was possibly compressed, or lodging itself into my under belly area. I won't get into graphic explanation here, but my effort entailed trying to separate the bumper from my gut.
And I think I did just that. There seems to be a few millimeters worth of separation now. Indeed. I pulled them apart. And I didn't do any permanent damage. I don't think.
I tried finding videos on YouTube, but there aren't any Jejunostomy materials anywhere, in any way, shape or form. It's all G-tube, all day, and all night long!!!!
Additional Answers to Additional Questions
My former wife comes down to visit me at night for an hour. Usually about 8:00 p.m. or so. And then I have the caregiver here on Tuesdays and Fridays.
As long as I'm not extremely ill, that amount of help works out decently.
Occupying Time (and Space)
I’m working on music composition, my never-ending songs, intermittently throughout the day. I also watch one Star Trek episode in the morning and then one in the late afternoon. I then also download new music and obscure from archive.org.
And that's about it.
Once I start feeling better, it's likely I will attempt to socialize again. Clearly, I can go long periods of time without much human contact - years on end, actually!
Why was your formula changed?
The formula was changed because I was having lots of pain in and around my stoma area - and without having been diagnosed, I had to do something. Anything.
Of course, this new formula creates other, and entirely different issues.
I've been trying to get back to the old formula for the past 30 days, so maybe something will happen soon. Or not.
Note: I had an online session with my all-new dietitian, and she said she'd do her best to get me a sample case of formula by next week.
That same young lady in Texas asks: Do you experience holiday excitement?
In regards to the holidays, we aren't a “visiting” kind of family. All among us are independent and capable of thriving / surviving on our own. It's always been that way. None of us wants to impose upon anybody else.
Although, if I'm able to regain my health to a certain degree, I shall indeed visit my mother.
Another commenter mentioned my former storytelling adventures -
Yeah, not much to write about when you're stuck in the garage all the time. And I highly suspect nobody wants to dive into my introspective thoughts, so that leaves me with nothing to write about except my continuing health concerns. Nothing is more boring than that.
Right now, I especially miss a few people in particular, from back at the nursing home. I've even had daydreams and running (imaginary) dialogue with them involved. I miss entertaining. I miss other types of specific means of engaging, as well.
And then of course, I miss my homeless friends. I miss the adventure involving their improvisational living. Their take and their situations - those sorts of things.
You Shall Be Tested!?
Regarding any and all tests, I've had pretty much everything in recent years, and none of my tests turned up anything besides confirming my severe gastroparesis.
The problem being, those medical folks are fully incapable of recognizing (much less identifying) the actual problems I'm having. Perhaps ten, twenty or even thirty years down the line, the medical community will acknowledge the exact problem(s) I am having… these common problems also found in others.
Well, they'll make these discoveries as long as there's money to be made. Or a loved one falls victim.
I am pretty much of the mindset that I need to fix my gut flora (expel the bad bacteria), and defeat my vitamin D resistance, in order to cure myself. I do not believe there are any current medications or known treatments that can help me.
Being out in the direct sunlight for prolonged periods of time is the only thing that's improved my overall physical state. And also, if I do not take probiotics, my condition notably deteriorates. Otherwise, that's it - which is better than nothing, far better than where I was a couple dozen months ago.
Oops! The side effect of asking me questions is that I write lots and lots of words in order to thoroughly explain things. I know that none of you need all these words, but it's kind of what I do. Heck, my sister's used to tell me I was exhausting… perhaps even difficult to endure - blaming The Depth of My Exploring.
So now, at long last, I shall explore no more!
Thanks for reading.
R. I. F. = Reading is fundamental.
Howard
it's not all black and white (unless it is)
Oh, here's a picture I took from back in the olden days, when I had a functioning camera:
