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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Blog entries by Howard
No Sleep Till Hammersmith
Because I'm an idiot, the battery on my feeding machine died over an hour ago (4am) and I'm still waiting for someone to respond. The unplugged chord lies dormant upon the floor, and I cannot reach it on my own.
Meanwhile, the sky is ever so slightly illuminated...
The Noise You Now Know
Beep, beep, beep, beep, beep, beep, beep, beep, beep … x1,000
It sounds like a billion desperation crickets getting murdered by thoroughly dedicated meth heads!
Anytime my roommate opens, accesses, and / or utilizes the restroom .. the door alarm beeps and blares…...
Sing Sing
Maybe ten days ago Angela came hustling outside into the courtyard (intentions unknown) as Dora and I sat shaded in the grass (her wheelchair, my geri-chair being semi-adjacent to each other).
You remember Dora, right? She's the 87-year-old who mostly says things I cannot quite...
Seeing Her Face First
She drove past me, but I didn't quite see her. The car looked familiar enough, though. A dirty and dusted deep red, which is not unusual here in the desert.
Meanwhile, I was parked in my teal and tan geriatric cart underneath a palm tree in front of the building, the...
Because I've been experiencing physical (pain-related) issues, my recent free time has been more dedicated towards coping with the discomfort, rather than taking part in creative pursuits. There's nothing terrible happening here, but there's a fair amount of "ugly" embedded within my writing...
Free Space
Yes, my brand new plan, my all-new scheme to acquire free goods.. is working! Today I won a single serving container of cinnamon applesauce by participating in a cutthroat competition versus a posse of wily oldsters. The name of the game? B-I-N-G-O! And I was victorious in the very...
B12 or B52?
I got totally crazy here at the nursing home Sunday evening… thought I might try the B12 drops I purchased back in December. Really, I decided to tempt fate in a fit of desperation, seeking out a means to (eventually and possibly) resolve my intestinal disorder. Previously, B12...
(Tuesday)
20 Minutes
That's the total amount of time I spent supporting the weight of my very own (heavy) head today. In comparison, my historic Daily Head Support Average (over the past seven years) equals two minutes or so. And that involves utilizing the commode.
Beyond that encouraging...
Two Weeks Ago
Screaming bloody chaos from across the hall as the "Oh God" Woman further disintegrates. Any time a family member appears she performs an enhanced act worthy of an Oscar. Or, a Tony. And yes, she used to be famous and well regarded, but now she suffers often and out loud...
Nothing to See Here
Well yeah, there may be something wrong with me (after having decidedly failed the EMG / Nerve Conduction Study two weeks ago…), but that "something" remains a mystery. I am now being sent to a neuromuscular specialist to have a muscle biopsy performed.
And here's the funny...
This is The Way of The Weary
I smiled and waved to my all-new roommate as Betsy wheeled me past him. He smiled, too. Great start, right? Then he asked Betsy for the television remote control, the one for the lone television in the room.
Ugh!
"I like to watch television. MeTV. I don't sleep at...
Notable, not Quotable (Tuesday)
When I wake up in the morning these days everything is fairly decent, everything's pretty darned good for me. I no longer feel as though I am poisoned, my body really doesn't ache much at all, and I am no longer dreading the repercussions of any and all physical...
Diagnosis
Okay then. And yes people, there is officially something wrong with me. It's not all in my head. I'm not imagining this entire illness. Seriously. The neurologist has made determinations. Medical determinations based upon tried-and-true medical knowledge acquired through years of...
The Best Batch Yet
I'd like to share some good news with you. Is that alright? As a matter of fact, this news is super good! That's several standard deviations above "normal" good news. So let's get to it, shall we?
Content Warning! - The following paragraphs utilize the word "commode" - so if...
Hostility Towards the Opposition
I think it's Monday evening. Whatever evening Valentine's Day falls upon. Right now I am considering my options. Tonight's CNA is angry. Clearly she is. How do I know this? After having pushed the help button, she came barreling into my room soon thereafter with...
Warning: This is an extra-long super expanded edition - many words were used in the making of this blog entry!
Warning #2: Howard does not go to ER as a result of anything that happens in this episode!
Today Might Be Wednesday
By the time Olga wheeled me outside this morning my grey hooded...
It's Saturday night and I am laying in bed… well, I am always laying in bed… and I'm listening to a jazz pianist named Joanne Brackeen. And she's darned good, performing lively and often complex compositions.
What follows are responses to the questions and inquiries culled from the comment...
Decor Values
Finally and at long last, almost everything went up. This includes each of the items sent to me over the past couple months, meant to cover my walls. I am now decorated. I have color in my room. Pizzazz. A reason for my eyes to linger longer.
The activities coordinator spent...
My window is cracked ever-so-slightly, so that I may hear the wind howling on through the desert shrubbery. The music I listen to compliments these natural sounds, via the specially chosen "Odd" mix emanating from my fully charged tablet, perched on the windows recess to my immediate right...
That was unexpected. Like totally.. as I received numerous birthday cards from the Phoenix Rising faithful (and super colorful balloons). Thank you kindly.
Yesterday was likely my first celebrated birthday since 2014. Or possibly, it's that I was more or less unresponsive for a couple of those...