These blog entries wouldn't be about the same darned thing over and over again if different things were happening… here.. at The Facility. Luckily, there are subtle differences, day to day. Or maybe not. Perhaps every blog entry sounds exactly the same.
255am
There's this really loud rhythmic noise that's been sounding off for the past 35 minutes… it sounds like a vacuum cleaner and an oscillating high powered hair dryer combined. Or maybe it's a crowd of people chanting in unison. And despite wearing my all-new sleep mask, I can tell that the lights in my room continue to flash on, then off, but not synchronized with the repetitive noise.
And then my roommate is moaning intermittently, or sobbing, or making amplified gerbil sounds. Meanwhile, the speed of rhythmic oscillating increases, or perhaps it's that the interval shortens. My grasp on reality is tentative.
But hey, I'm not even angry right now. I get it. This is a test. All of this has been a test, up to and including everything having to do with this illness. So the question is… How much can Howard take, and handle?
The feeding formula problems. The succession of missed appointments. Having been unceremoniously dumped…..
< deleted >
Eh. I'd originally listed 37 different horrific/troubling/neglectful/traumatizing life events that have taken place in these past six bed bound years. But each of you already knows (or is able to deduce) what's happened to me within this timeframe.
So let's move past this needless dwelling, this pointless deciphering of the past, shall we?
ANSWER: I think the odd strange oscillating noises were generated from an out of whack CPAP machine (and if the darned thing is IN whack, he's in some serious trouble). Yeah, I saw it sitting out on his nightstand today … tubes and a mask and a bunch of dials on a rectangular shaped box
Questions from the Panel of M.E./CFS Experts:
@lenora
Have you received a poster or two by now? Although it seems you don't have anyone to hang things.
Yes, the guitar poster I posted about (and provided the picture for) previously… and another just arrived item today). But I am waiting until I've received enough items before ensnaring a staff member.
Where are those pleasant nurses, or your friend who represents you?
I see my regular nurse during the graveyard shift five nights per week (and yes, she is both nice, and helpful). And unfortunately, my advocate is greater than 2,000 miles away (my legal advocate/friend is closer.. about 35 miles away, but she's more of an "in case of emergency, break glass'' kind of person .. which is fine and dandy).
@christiankatz
I have more questions. Were you able to sneak out of your room without Jeff knowing you were leaving, and if not, did he know why you left?
I was approached by an assistant director (while I was lounging outside), and she explained that Rosa could move my possessions into my new room immediately… while I remained outdoors, basking in the glorious sunshine.
That evening (after having moved), I asked my favorite nurse to explain my circumstances to Jeff.
"Howard moved because he's l always wanted a window view, and a room suddenly became available… " Both of which were true. I had her leave out the more specific details, the ones that may have been hurtful.
Do you know why 90% of the residents in your wing quit talking? My guess is dementia, but perhaps I'm wrong.
Honestly, I think each of them simply ran out of things to say.
But really, I have no idea at all (why they no longer communicate regularly). Some say a few words, or gesture.
Like someone mentioned before, is it possible for you to try sipping your formula?
I've tried sipping formula. It's just that anything that goes into my stomach (besides applesauce), brings about nausea. And anyway, I tend to (slightly) gag on any fluid.
The Light of Day
This is how my morning started … something I wrote (and sent) as the dawn encroached upon my morning reality:
To whom it may concern,
Apparently, my feeding formula order was never confirmed by < this facility >, so I am officially out of formula. I called the distributor and placed the order just now. I was told my formula and related supplies will arrive in 1 to 3 business days (likely by Friday).
I also requested that < the distributor > go directly through me from now on, so that I may confirm and track my formula/supply orders on my own (going forward). They will contact < the facility > directly if I am not available or responding.
I shall also contact the person who used to be my wife, to see if she has any formula leftover at the house.
Lastly, I have the dentist appointment today.. hoping transport comes through.
Howard < blank >
Room xxo
(###) ###-####
Joy of joys… it turns out they had some formula bottles stashed in the nurse's med room, so I was only down and out for a couple of hours. Yay team! So, I do have 4 bottles left, which will carry me into Friday.
The Day Unfolds
Besides the formula feeding debacle… I stayed inside all day because I knew I had a shower scheduled and I knew I had the dreaded dentist appointment to look forward to… except neither of those events happened.
Today's CNA explained that it was my roommate's turn for a shower (it's not), so I missed again. Last week I missed shower time, too… because they changed my shower day when I moved into this room (I did shower the next day).
So, whatever… right? It's just warm wet water. I'll have another chance on Sunday. It's not like I have to wait another six years before I shower again!
Then the whole dentist thing fell through. Again. I'm not going to waste words on that event. Really, there's not much to say. I did, however, become confrontational with the transport dispatcher. Yes, I loudly voiced my displeasure regarding their modes of operation. Then, with my blood pressure peeking, I made an effort to reach out, to share my frustrations.. but nobody was reaching back.
In between these oversights… there was noise. The television played with elevated volume, and seemingly, with an increasingly escalated sense of urgency as the hours progressed (from 8am until 1255pm).
No comment
But really, it wasn't all that bad. I like Westerns, just not that loudly.
Eat This
Oh, and after everything around me fell apart, I took a huge risk. I took a small bite out of a gluten free cookie (similar to an Oreo), and the cookie tasted wonderful.. just like a cookie should. I even swallowed a bit and it didn't make me nauseous.
But… I did experience unwanted side effects almost immediately: lethargy, brain fog, slight confusion… and then, after more closely scrutinizing the ingredients… boom, right there! It was right there all along. Potato. In the cookie. But why?
So the cookies will be donated to my former roommate.
After recovering slightly from the brain fog, I sampled item #2. Bada Bean Bada Boom broad bean snacks. And the first flavor I tried out was BBQ Style.
Taste buds activated. Intermittent intestinal activity noted. Didn't swallow. Felt decent afterwards, until two hours later. A "too full" and icky feeling. Perhaps I overdid it. I am ever so slightly encouraged, though.
Time Passes - Tick, tick, tickkkk...
630pm - Wednesday, Dec 8th ---
They seem to have forgotten about my feeding formula again this evening… but I get to rip open a new bag and keep the formula flowing with my emergency secret stash supply (I no longer miss any feedings, they are merely delayed or incomplete).
And damn, it's 10pm now and nobody ever checked to see if I needed formula. I'm not quite sure if we have a real live nurse on duty, as it's been over 12 hours since I last saw one. But I'm okay. I am being fed. My need is being met.
Anything Positive?
Yeah. I texted with a friend. For an hour. It helped. I laughed a bit. And now I'm better able to face The Return of the Blasted Blasting Television (there was a much appreciated quiet interval lasting from 5pm - 8pm).
Today's Texting highlights:
Her - "I was really good at leading a double life"
Me - "I was pretty good at living in double-wides, does that count?"
Her - "I need to be really grounded though"
Me - "Just remember to plug in your third prong"
Her - "It just seems that god had better available options rather than bleeding every month."
Me - "Right, but I think he was trying to give women a break. Give them some ME time away from the menfolk"
Her - "Almost all of my friends with this illness are strange, and have been black sheeps etc."
Me - "That sounds pretty racist to me. Why? They aren't black sheeps, they're African-American Sheeps! Gosh darnit! LOL"
Me - “Thanks for helping me, too. I was in a really crappy place. But now I'm in a karaoke place”
I will attempt to post images of my received gifts later today in an entirely separate post… if I can figure it out why I'm having problems (I think I need to somehow shrink the image file sizes) -
Take care,
Howard
255am
There's this really loud rhythmic noise that's been sounding off for the past 35 minutes… it sounds like a vacuum cleaner and an oscillating high powered hair dryer combined. Or maybe it's a crowd of people chanting in unison. And despite wearing my all-new sleep mask, I can tell that the lights in my room continue to flash on, then off, but not synchronized with the repetitive noise.
And then my roommate is moaning intermittently, or sobbing, or making amplified gerbil sounds. Meanwhile, the speed of rhythmic oscillating increases, or perhaps it's that the interval shortens. My grasp on reality is tentative.
But hey, I'm not even angry right now. I get it. This is a test. All of this has been a test, up to and including everything having to do with this illness. So the question is… How much can Howard take, and handle?
The feeding formula problems. The succession of missed appointments. Having been unceremoniously dumped…..
< deleted >
Eh. I'd originally listed 37 different horrific/troubling/neglectful/traumatizing life events that have taken place in these past six bed bound years. But each of you already knows (or is able to deduce) what's happened to me within this timeframe.
So let's move past this needless dwelling, this pointless deciphering of the past, shall we?
ANSWER: I think the odd strange oscillating noises were generated from an out of whack CPAP machine (and if the darned thing is IN whack, he's in some serious trouble). Yeah, I saw it sitting out on his nightstand today … tubes and a mask and a bunch of dials on a rectangular shaped box
Questions from the Panel of M.E./CFS Experts:
@lenora
Have you received a poster or two by now? Although it seems you don't have anyone to hang things.
Yes, the guitar poster I posted about (and provided the picture for) previously… and another just arrived item today). But I am waiting until I've received enough items before ensnaring a staff member.
Where are those pleasant nurses, or your friend who represents you?
I see my regular nurse during the graveyard shift five nights per week (and yes, she is both nice, and helpful). And unfortunately, my advocate is greater than 2,000 miles away (my legal advocate/friend is closer.. about 35 miles away, but she's more of an "in case of emergency, break glass'' kind of person .. which is fine and dandy).
@christiankatz
I have more questions. Were you able to sneak out of your room without Jeff knowing you were leaving, and if not, did he know why you left?
I was approached by an assistant director (while I was lounging outside), and she explained that Rosa could move my possessions into my new room immediately… while I remained outdoors, basking in the glorious sunshine.
That evening (after having moved), I asked my favorite nurse to explain my circumstances to Jeff.
"Howard moved because he's l always wanted a window view, and a room suddenly became available… " Both of which were true. I had her leave out the more specific details, the ones that may have been hurtful.
Do you know why 90% of the residents in your wing quit talking? My guess is dementia, but perhaps I'm wrong.
Honestly, I think each of them simply ran out of things to say.
But really, I have no idea at all (why they no longer communicate regularly). Some say a few words, or gesture.
Like someone mentioned before, is it possible for you to try sipping your formula?
I've tried sipping formula. It's just that anything that goes into my stomach (besides applesauce), brings about nausea. And anyway, I tend to (slightly) gag on any fluid.
The Light of Day
This is how my morning started … something I wrote (and sent) as the dawn encroached upon my morning reality:
To whom it may concern,
Apparently, my feeding formula order was never confirmed by < this facility >, so I am officially out of formula. I called the distributor and placed the order just now. I was told my formula and related supplies will arrive in 1 to 3 business days (likely by Friday).
I also requested that < the distributor > go directly through me from now on, so that I may confirm and track my formula/supply orders on my own (going forward). They will contact < the facility > directly if I am not available or responding.
I shall also contact the person who used to be my wife, to see if she has any formula leftover at the house.
Lastly, I have the dentist appointment today.. hoping transport comes through.
Howard < blank >
Room xxo
(###) ###-####
Joy of joys… it turns out they had some formula bottles stashed in the nurse's med room, so I was only down and out for a couple of hours. Yay team! So, I do have 4 bottles left, which will carry me into Friday.
The Day Unfolds
Besides the formula feeding debacle… I stayed inside all day because I knew I had a shower scheduled and I knew I had the dreaded dentist appointment to look forward to… except neither of those events happened.
Today's CNA explained that it was my roommate's turn for a shower (it's not), so I missed again. Last week I missed shower time, too… because they changed my shower day when I moved into this room (I did shower the next day).
So, whatever… right? It's just warm wet water. I'll have another chance on Sunday. It's not like I have to wait another six years before I shower again!
Then the whole dentist thing fell through. Again. I'm not going to waste words on that event. Really, there's not much to say. I did, however, become confrontational with the transport dispatcher. Yes, I loudly voiced my displeasure regarding their modes of operation. Then, with my blood pressure peeking, I made an effort to reach out, to share my frustrations.. but nobody was reaching back.
In between these oversights… there was noise. The television played with elevated volume, and seemingly, with an increasingly escalated sense of urgency as the hours progressed (from 8am until 1255pm).
No comment
But really, it wasn't all that bad. I like Westerns, just not that loudly.
Eat This
Oh, and after everything around me fell apart, I took a huge risk. I took a small bite out of a gluten free cookie (similar to an Oreo), and the cookie tasted wonderful.. just like a cookie should. I even swallowed a bit and it didn't make me nauseous.
But… I did experience unwanted side effects almost immediately: lethargy, brain fog, slight confusion… and then, after more closely scrutinizing the ingredients… boom, right there! It was right there all along. Potato. In the cookie. But why?
So the cookies will be donated to my former roommate.
After recovering slightly from the brain fog, I sampled item #2. Bada Bean Bada Boom broad bean snacks. And the first flavor I tried out was BBQ Style.
Taste buds activated. Intermittent intestinal activity noted. Didn't swallow. Felt decent afterwards, until two hours later. A "too full" and icky feeling. Perhaps I overdid it. I am ever so slightly encouraged, though.
Time Passes - Tick, tick, tickkkk...
630pm - Wednesday, Dec 8th ---
They seem to have forgotten about my feeding formula again this evening… but I get to rip open a new bag and keep the formula flowing with my emergency secret stash supply (I no longer miss any feedings, they are merely delayed or incomplete
).And damn, it's 10pm now and nobody ever checked to see if I needed formula. I'm not quite sure if we have a real live nurse on duty, as it's been over 12 hours since I last saw one. But I'm okay. I am being fed. My need is being met.
Anything Positive?
Yeah. I texted with a friend. For an hour. It helped. I laughed a bit. And now I'm better able to face The Return of the Blasted Blasting Television (there was a much appreciated quiet interval lasting from 5pm - 8pm).
Today's Texting highlights:
Her - "I was really good at leading a double life"
Me - "I was pretty good at living in double-wides, does that count?"
Her - "I need to be really grounded though"
Me - "Just remember to plug in your third prong"
Her - "It just seems that god had better available options rather than bleeding every month."
Me - "Right, but I think he was trying to give women a break. Give them some ME time away from the menfolk"
Her - "Almost all of my friends with this illness are strange, and have been black sheeps etc."
Me - "That sounds pretty racist to me. Why? They aren't black sheeps, they're African-American Sheeps! Gosh darnit! LOL"
Me - “Thanks for helping me, too. I was in a really crappy place. But now I'm in a karaoke place”
I will attempt to post images of my received gifts later today in an entirely separate post… if I can figure it out why I'm having problems (I think I need to somehow shrink the image file sizes) -
Take care,
Howard
