• 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.

    To become a member, simply click the Register button at the top right.

Flittering and Skittering About - NEW SONG with a Music Video

Yes, I'm finally offering up the fruits of my chosen labor of love. My expression to the masses. Well, not very many of the masses will be watching or listening. But I've never let that stop me. And neither should you. Don't stop. Unless you're doing something bad. So you know, bad things should be kept to a minimum. For instead, you may subscribe to the ideal of moderation. The Middle Path. Either way, this video and my song define the path. Or at least, in a singular space and time it was so defined.

Today I've been told that I MAY no longer be able to leave the property. My days of touring and traveling MAY be over. Why? Because I need a doctor's written permission each and every time I roll off the property. Of course, that's not feasible. I leave the property at least once per day, if not multiple times. Am I nearby? Yes. Of course.

Oh, and they don't want me in the parking lot either.

So where does that leave me?

Hmmm… I'm going to fight this. Unless, of course, there is no fight to be fought. I fully intend to sneak around from now on, rather than disclosing anything to anybody. So often in life I do my best to do the right thing, and I am punished for this. It seems as though the people who take advantage of the upper hand, but I know that's not always the case.

In addition, if I roll off the property, it was explained to me that insurance will be notified… and insurance will likely end my stay at the nursing home.

Why is that?

Because apparently, if I'm healthy enough to roll my way down a bike path at 3.7 mph, I can very well support and care for myself and get a job and have a wife and kids and burp blubbery babies, change diapers, and go to the bar so that I may drink overpriced liquor and then tool around town driving drunk at top notch power chair speed before I head off to a local professional sporting event to root root root for my team because professional sports teams are super important. So then it's booze, and then I'll need to find some Quaaludes. I think. Heck, do Quaaludes even still exist? I've heard unsubstantiated rumors. Actually, I think all rumors are unsubstantiated. Because I guess .. that's the essence of a rumor.

So again, we go back to my NOT having or receiving disability. Or my NOT being diagnosed.

If I were receiving disability, I could live in an assisted living center. Or share a home with other disabled people, probably a back of the line location down in South Phoenix. Or I could rent a room from somebody, then have a caregiver come over every few days to help me shower. Things like that.

So right now, the problem being, and as they've mentioned, if insurance gets wind of things I will lose their insurance, and then I will be homeless. At least, that's the threat. Or the reality. Or both.

Yes, insurance is my master, and they are the ones keeping me alive. Plus, they did pay for the damn power chair that allows me to enjoy life more dynamically.

So in reality, I should just behave like a good nursing home victim and sit in my room and wait for my fucking disability to be approved. And it should happen it really really should. This time. Why? Well, check this out!

In the least, I've been diagnosed with Delusional Disorder. And Personality Disorder (if I'm reading my record right, MULTIPLE personality disorders!), Somatization Disorder. Anorexia. Pa'nar Syndrome. Adult Autism. Nail Psoriasis. Active Epstein-Barr. Severe Gastroparesis. Nihilism. The Phage. Bio-temporal Flux. Kamaraazite Flu. Plak Tow. Rop'ngor. Sebaceous Cyst. Stab Wound. Synthococcus Novae. And lastly but not least, the dreaded T'lokan Schism!

So you know, there's been a drastic change here in the psychiatric department. And also, with the doctoring department. I have not received a doctor's visit in two months (oddly enough, they've been billing me $338 per visit, so collections is all over my ass!). But what matters most is that the psychiatrist who did most of the false diagnosing, quit. Or he's on an involuntary leave of abstinence. That means no sex with other psychiatrists (for him), I suppose. Not sure if that's really a problem deep down in the psychiatric trenches, but you never know. I mean really, how could I? Sometimes it's all a matter of happenstance and foregone conclusions.

Original Intentions

Heck, I still need to call this song something. Up until now it's always been named "July 12th" - Why that moniker? Well, that's when I started in on the song. That's when the slow meticulous headway began. And I thank each of you for helping me get back into that groove. I've now got the necessary components to continue making music and continue being creative.

So yeah, eventually I'll release some real actual traveling footage (without fancy-pants editing and such). Either way, I hope you enjoy the visuals, because they at least offer a vague idea of what's going on over here.

Regarding the music, I don't know what to say. Despite being cheerful, it's probably somewhat unsettling. Or perhaps not. I don't know. Everything sounds normal to me. Musically. But this one sounds more normal. I finished a Country Hip-Hop song about 3 weeks ago. But I don't think anyone's ready for that one yet, so this song was next up to bat.

Take care. Hopefully I can furnish a normal kind of blog entry soon. In any case, I just really wanted to get this one out. I wanted to show you that I've been working on things, and working towards things.

H

Comments

The title is fine....but @Howard, slow down. I'm now dizzy and feel as if I've been to a local carnival. (Are nausea bags provided?)

Truly glad that you have your "baby" back and can now create again. We all need something....better yet, a few things (hobbies).

Hmm.....they're right about turning you out. Insurance rules the universe and no matter how much the workers may want to help you, they're powerless against insurance codes. So be a good boy and write a song for the ladies instead. Perhaps you could learn to dance in your chair instead of an outing.

I know, I know...it's a darned if you do and a darned if you don't situation. Just don't make things worse for yourself as I'll be forced to scold you. (Where is your mother these days? Does anyone from your family ever show up? Well, Xmas is coming so they may do their yearly charitable thing.) Are you keeping a list of wants and needs (just in case they ask)?

Does your roommate have any suggestions (such as a room in his house?). Fine, but you still need assistance, don't you?

Look longingly out your window and paint us a picture of clouds. Musical accompaniment would be good. Take care. Yours, Lenora
 
Very Very cool! Love the new song and video...!


Meanwhile: the rest sucks. Excuse my French.

My husband says Qualuuds still exist (someplace)

Disability lawyer: our friend got his after four years of trying, within six months.....

so somehow somehow somehow
 
Sadly, what the Home is laying upon you...was forseeable....they have all these liabilities and lawyers now rule the world.

Trees are managed now by lawyers (will the tree fall? Maybe, but conclude YES cut it down says the lawyer)

A friend of mine in a care place: encountered a similar outcome. His family are suing the care place for allowing him to leave unsupervised.

So there exists a solution. The path to this solution...is in that darn dark forest...and a better flashlight is needed.

A Dilemma..that needs a solution conjured up.
 
Disability lawyer: our friend got his after four years of trying, within six months.....

so somehow somehow somehow

Yeah, THIS attorney says he can now do the entire US with the system having gone virtual. (At least in the video I watched from 4 months ago.)

I think there is also another attorney named Nancy Cavey. She also has some YT videos and has worked with ME/CFS cases.

Anyway, maybe watch some of their videos and see what you think.

And :( for the "new" nursing home policy. @Howard.
 
Last edited:
By the way, I'm not really going THAT fast. That's two times speed on the video. I'm only riding at 6.4 mph at my fastest speed.

Also, social services (here) is working with me to submit my documentation to Social Security for the disability claim. I have all my physical medical records now, here, presently, so that's currently in the works. I will be watching the process as it takes place and also be hands-on. Plus, this time, I'm fairly confident that I will get it, based upon my multiple authentic diagnoses!
 
Just curious if the facility bought the wheelchair or if it was a government social services agency or maybe your insurance that covered it. It might be good to know in case the facility ever threatens to take the chair away from you.

I hope they never do but you never know unfortunately. :(
 
@Howard.....you know that we ALL wish you the very best. Unfortunately I wondered about your nursing home letting you loose all alone for so long. Most are very watchful, so they must have fallen down on the job in that respect.

@Hufsamor caught how you much have felt beautifully. I'm sure she keeps these photos handy as she always seems to have the perfect shot.

Anyway, be a good boy or at least try. How about bingo???? Yours, Lenora
 
Just curious if the facility bought the wheelchair or if it was a government social services agency or maybe your insurance that covered it. It might be good to know in case the facility ever threatens to take the chair away from you.

I hope they never do but you never know unfortunately. :(


Insurance paid for my chair.


Related--- I just had a care planning meeting with social services and they aren't particularly concerned with any of my activities. Mostly, it's one busybody I have to be a concerned about. Are busy-bodies still a thing? And the other person in question has backed off. She's a rules and regulations person. So I don't personally blame her for the unfortunate escalation. She can't help herself.

So yeah... I just need to cease communicating with staff members here, and then everything should be okay! LOL

I mean heck, I could lose the ability to sit up and function tomorrow and be stuck in bed forever and ever (again) until the day I die. So I'm going to go out and do things whether they like it or not. I spent 7 years stuck in bed, right? Ha! :)

But yes, I am being careful.
 
Between the music and the stylized graphics my first response to this video was: "This looks like an amazing video game!"

Please do let me know when "Howard's Fantastical Electrical Wheelchair Adventure for Playstation" is released. It looks like it has the potential to become a cult phenomenon.
 
Sometimes life flows. Sometimes people are sad (or detached). Sometimes obstacles are difficult to navigate. And occasionally the weather cooperates, making the outdoors cool and refreshing.

I'm mostly okay, hope you are, too!

IMG_20221008_190231__01.jpg
 
Oh @Howard, it's nice to hear from you. It's good to hear that you're mostly OK, and I gather that fall is starting to arrive in Phoenix...is that right?

Are you still able to leave the nursing home for a ride in your new vehicle?

Yes, the photo looks like autumn is upon us. It is in TX also. Bundle up well....and stay healthier than last year. How's your roommate? Yours, Lenora
 
Oh @Howard, it's nice to hear from you. It's good to hear that you're mostly OK, and I gather that fall is starting to arrive in Phoenix...is that right?

Are you still able to leave the nursing home for a ride in your new vehicle?

Yes, the photo looks like autumn is upon us. It is in TX also. Bundle up well....and stay healthier than last year. How's your roommate? Yours, Lenora

So you know, I do not receive notifications when you post on my threads or any place else. So I didn't realize that you proposed these questions and such. I apologize for missing this. Anyway, check out my new blog entry, and I think I responded to most of what you asked. :)

But yes, significantly cooler weather is on the horizon!

Be Groovy!
 
Hey Howard.....I'm before you, so "I'm Feeling Groovy." I figure my questions will be answered sooner or later, so don't worry about it.

Just behave yourself, now! Yours Lenora
 

Blog entry information

Author
Howard
Read time
4 min read
Views
937
Comments
16
Last update

More entries in User Blogs

More entries from Howard