Uplifting Encouraging Hopeful

November 4th, 2021-

A Great Great Day!!!

Today (Thursday, November 4th) was maybe the best day I've had in the past…. the past several years? Yes, a veritable series of positive events came to pass. So let's dig in, shall we?

Slumber Seeking

Yesterday I was in the most physical muscle pain (including an aching burning head-to-toe bodily soreness) that I've experienced since becoming ill (typically it's just extreme exhaustion and being stimuli sensitive). Not only did I perform in the Howard renowned Commode Olympic Event, I also spent several dozen minutes outdoors, despite already being exhausted and barely able to move by then. Yes. I was that desperate to be outdoors.

And then later in the evening, sleep happened.. nearly three and a half hours. Uninterrupted. Thanks to Judee, I remembered to take my tart cherry powder (after a brief hiatus without). Upon awakening, my physical body did not hurt all that much (although my bedsore did come back yesterday, so "ouch" on that) and the ringing in my ears finally dissipated.

No, 3.5 hours isn't a heck of a lot, but after several consecutive nights of super late getting my formula changed out...

Supply Chain of Command Performances

As of yesterday, I pulled some strings, and am proud to announce that I was able to procure my own personal medical supplies. How? Through making direct contact with my former distributor. By tomorrow, I'll have bandages, bottles, medical tape, and syringes up the ying-yang. So yes, I brokered my own supply deal (the supply guy came in and thanked me for getting him off the hook).

Free as a Caged Bird

Now that I am no longer affiliated with or locally cared about by any human beings, I am free to move wherever it best suits me. It turns out there's a C.F.S. friendly clinic in Flagstaff, Arizona (thanks Rufous), approximately 120 miles away.. high up in the ice cold mountains to the north. So I called and left a message with those folks, wanting to know if they take my insurance (unlikely). If so, it seems they do have one highly rated nursing home up there, while the other two are bottom scrapers.

UPDATE: Flagstaff Connection

I appreciate that they called me back so quickly. It was only a matter of hours before they returned the call. And here, where I'm staying, I've been waiting several weeks after leaving several different messages with several different departments. Yes, I left messages to the people operating mere dozens of metres away from me down the hall (versus 120 miles away), and still… nothing.

The bad news out of Flagstaff is that they do not have any available appointments until March of 2022. And if I'm understanding the calendar correctly, that would be some time next year. Well, okay.

The Bad News Part 2 has much to do with the cost of doing business.

The initial two and a half hour interview/assessment is $750 out of pocket. The follow-up appointment is just $250. And then each subsequent quarterly appointment costs $225 (insurance doesn't cover anything).

So, if my math is correct, which oftentimes it is not, it looks like I'll need to come up with $1,500 just to cover the first year of treatment/being seen (telemedicine appointments only).

Hmmm.. that's less than ideal.

Medications, vitamins, and other supplementation isn't included. And neither are any tests, wherever it is they happen to conduct testing.

So it seems this would be a several thousands of dollars enterprise.. which is not happening. They do not accept insurance. And besides that, I have no way of knowing if this is a legitimate enterprise.

The phone-calling woman suggested I contact Getwell to schedule for the two-day CPET thing. Which, is an impossibility.

EDIT: But wait. It's not yet over. My little sister called, saying she'd cover it. The cost. Or, at least she'd try to. Depending upon scheduled tests taken.

REVISION: Nevermind on that, too. And please do not skip ahead several paragraphs, because someone called me this evening, a person who is devising a possible work around for these potential insurance obstacles.

Oh, Snap - Back to Reality

HOLY FU**! My roommate Jeff is watching some type of movie star tabloid show on Tv full blast, the kind where everybody seems to be unnecessarily yelling at each other all the time, while also playing country music on his laptop, while also playing his all-new barnyard sounding game. I'm not quite sure how he resurrected those animals...

When I get better, the first thing I am going to do is MURDER EVERYBODY TO DEATH!!! And then I'll go back and murder everybody again, just to make sure. ARGH! At least, PICK ONE!

*please keep in mind that I am not a violent person who harbors violent thoughts. Ill will? Yes, perhaps I harbor that

*please also do not inform on me, as they may well tack on another unfortunate descriptor to my laundry list length of diagnosed afflictions - yes, you know it's true

Not Moved

According to my trusted insider nursing source, the other facility I am considering transferring to is experiencing many of the same staffing shortages we are. Apparently, nobody wants these jobs, up and down the line and across the industry. Group homes were also discussed, but those are very hit or miss.

I desperately need peace and quiet, perhaps above all else. Well, that… and not being put in the psych ward or coerced into taking drugs.

By the way -

As I get further away from this, I've come to realize that a certain somebody made very little effort to ease my suffering. Reflecting back, her lack of interest and involvement from the start of my illness was just flat out stunning. It's as though the loving part of her immediately shut down, broke down, or perhaps, couldn't handle it.. the reality of my situation. I don't think she was built that way.

It doesn't make her any less of a person, it's just that I am the opposite way, sometimes thriving in difficult desperate situations. In one example, she froze up in the midst of a life or death emergency, while I busily administered CPR, while also barking out instructions (long story), while also handling the 9-1-1 dispatch.

I won't go into details that would possibly further enlighten, but I think that's part of what happened here… and now things aren't bothering me so much, realizing this. I'm not as angry towards her. She was incapable of dealing with my being ill, just as I am incapable of dealing with many many other things. We're all good at something.

Related?

"The Sudden Death of a Loving Relationship"

Yes, I just finished an old/new reworked song.. fortified by me yelling at the top of my lungs while in the shower room here at The Home. My CNA was both supportive and amused all the while. And also willingly participated, in the name of creativity.

I play a mean clarinet in this number, while a former friend's daughter blows her trumpet apart at the seams. I also drop several "to be expected" f-bombs, so be wary and be scared.

This music is not friendly at all, but captures the essence of my physical and emotional pain of late.. a near constant pummelling. I won't link the video here, but if you must listen, you will find it on youtube.

Unresponsive

I realize I haven't responded to, or acknowledged many of the recent comments posted, but I may well circle back around when the time is right.

In my head? Yes, of course I've answered you. Does that help at all @lenora @Rufous McKinney @everybody else I missed :)?

Stationed

Michaela the CNA had our rooms again today, which is good news for me, because she is always motivated and willing to help me out. And she also keeps telling me to stop apologizing when asking her to do things.

"I'm here to help. Stop it!"

Fine! I'm so used to NOT asking for assistance with anything. I tell her

Misdirection

So I was thinking today, where the hell could I possibly live...? It's not crazy to wonder about things like that, is it? So I scoured my mental database, running through a host of names and past scenarios. And then someone came to mind, a particular friend, someone I've known for the past couple of decades.

In the old days she was always asking me to move in with her, so of course, I was thinking… Why not now?

Well, "now" is a whole lot different from then. So I quickly dropped that line of thinking, and instead, texted her the news.

You see, I'd been giving her relationship guidance since 1997. Yes, really. She often confided in me and I offered honest assessments (likely very poor ones, at that). Anyway, I was comfortable letting her in on my current situation. And she was just as soon ready to step up and take action.

"I'm a claims litigation specialist, and I'm gonna make things happen for you."

Hmmm… what "things" exactly?

So she runs down the many ways to approach my difficulties and current roadblocks, and by golly, it sounds like she knows what she's talking about! She had answers for everything.

"Letters, documentation, threats, insurance matters.. that's what I do."

And I guess she does. And now she will.

Hours later she calls back.

"I've got Kristen onboard, she's just a few blocks away from you, so she can be physically present at your locale if need be. Supplies, paperwork… and Annette is in Legal, too.. remember her?"

Well, yes, I do.

"And then there's Careen."

I'd nearly forgotten about all these damn people from ten or fifteen years ago. They've all got skills.

I don't know which one's will necessarily follow through or step up (2 of 3 have already contacted me directly), but my friend is already formulating my next move. You see, she's dealt with nursing homes for years, protecting her parents. So it seems I should formally ask her if she wants to be my advocate (although she seems to think she is already).

An Outside Man

Three hours of blazing desert sunshine. That's how much outside I withstood. Yes, I did that, despite fading badly many times (and mere hours after having been destroyed by the Commode Olympic Event). But I always seemed to be catching a second wind out there. A "Hey. it's gonna be okay" kind of vibe. I even survived Seventeen Seniors Simultaneously Smoking!

Second winds, second hand smoke. A pattern develops? Do you see it, too?

A Room and Change

And then, get this. The on-duty evening nurse comes out to retrieve me. I immediately sense good things from her. A good vibe. So I happen to mention the peaceful, easy feeling out here, versus the incessant noise my roommate typically generates, before mentioning how it's bodily painful.

"Why don't I just move you to another room?"

"You can do that?"

Apparently she's well placed here. And she set up for a private meeting with Social Services tomorrow, after having spoken with them directly.

Wow. What the hell is going on here today? This has almost been the best day of my entire life. And only a few days ago, it was likely my worst. On top of that, very few noted physical side effects after pushing myself.

I Will Be Done

So much for that. No more sleeping. It's 4:13. This all started around 3:30. That means I've slept 3.5 hours again. We're all lit up because all of the lights are on. And I shouldn't care, but my throat is burning. They sprayed something awful in here. Something strong. So I'm assuming there was an accident of some kind. So okay, nothing we can do about that. The nurse and CNA have been in and out. Back and forth.

I've slept 17 hours this week (Monday-Thursday).

Maybe it's better. Maybe it's best that I don't really sleep.

Take care,
Howard

Comments

This is all incredible to read and truely amazing ! So happy these good things are transpiring for you. It all like a miracle.

Including figuring it out. Figuring out this obvious (edited) thing, that despite love and everything else, sometimes other people do not rise to the Occasion before them. Some of us aren't yet ready. Don' t yet have the skills. or whatever it is we tap into.

So just keep allowing these positive shifts to take place. Sing loudly in Showers, if you can sing. So many kind people are there helping you and friends returning to your life including somebody with SKILLS!

SKILLS exist!

There is something about Flagstaff (personally, its a node and things happen in Flagstaff)

Maybe just put yourself on their waiting list anyway, as March 2022 isn't that far off in the distance.

I don' t need answers to my frequent Peanut Gallery remarks. Sometimes I think I dream up replies.

R
 
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So now, of course, I am thinking about Rising to the Occassion.

Events in which others stood by, paralyzed.

Somehow, in the midst of a total disastrous state, I become the person who sort of takes over catastrophes.

We had just rented a millionaire mansion when my roommates water bed exploded, flooding a two story house with cedar lined closet floors and 20$K worth of wall to wall carpeting.

Everybody else was paralyzed, I grab the push broom and start pushing water out of the house.

I took over the sail boat on the Pacific Ocean, in lieu of witnessing my family drowning.

I took over boats on any number of occasions.

Or announcing: we are evacuating now. As my husband ate potato chips and watched the news.

I am currently voting- No More catastrophes! I"d prefer to sit, thru the next Occassion.
 
Hi @Howard....I was on MEAction a short while ago. I wonder if it would be worthwhile for you to ask your doctors to listen to Jen Brea's TED Talk. It may be a learning experience for them as I'm sure you're probably one of the first patients they've dealt with who has ME. I watched it again myself....could be useful for both them and you.

@Martin aka paused||M.E. and other Germans....I tried to add my name to the list and even got an English translation BUT I still don't think my name is on there. I know the deadline for signatures is Nov. 9th, so good luck. I'd like to help, but.....!

Meanwhile back to you @Howard. Great news about (hopefully) a quieter room. Maybe you'll even luck out and get a private one for at least a time. Jeff sounds like a regular pain in the a..! If lights are out at a certain time, why aren't toys also taken away? Anyway, hopefully he'll be left behind in the dust. Hope the CNA doesn't forget.

Nursing homes are generally short of help....even before COVID. They're OK for patients who can walk alone, things of that nature, but it's tough when you can't.

Now be a good boy, or they may not let you go out to play with the birds any longer. Personally, I love them....not grackles or bluejays (they both eat smaller birds) and we have multiple housing for most of them. Of course they don't use it, they'd rather nest in the bushes where the cats can get them. Still, the survivors keep us entertained. Being outdoors is one of life's most underestimated privileges Maybe next time you can be put in the No Smoking section....and then the wind will blow the wrong way. Count on it.

See, now you have birds to learn about, too. Good. Yours, Lenora.

Yours, Lenora. .
 
So much awesomeness, yay! Reading this did my heart happy. It's good you have friends in the right places. There's so much to hope for.

Flagstaff is one of my favorite places in the US. There's a great vibe there and hope you get to go.

Whoo hoo, you might get a nice quiet room now! I'm glad you said something.

I have to remember to go to YT later and listen to your song.
 
There is something about Flagstaff (personally, its a node and things happen in Flagstaff)
Yeah, it's a nice escape from the desert floor. A precipitous drop in temperature. Lot's of green growth. Less crowded.


And speaking of being less crowded, I am otherwise okay, but my brain is all worded out. I spent a fair amount of time today documenting new and continuing feeding issues. Texting people now and again and again. Working on a new blog entry. Chatting with Federico out on the patio. Readying a thread response. Preparing to fill out online and offline paperwork (doctor visit related), while all the while fending off intrusive levels of room related volume.

Yeah. Really busy. Not getting things done. Need to come up with a plan. Thoughts disorganized. Breathe. Reconsider. Enjoying my ever-reddening sunburn.




TODAY - more good news, no time/energy to write / potential doctoring change/challenge :)

I'll be back ..
Howard
 

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