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Eleven Days Left - featuring: updates and answers

This will be one of my last evenings perched above the freeway. And due to the excess noise beneath me, I am nearly hollering into my phone as a means to get my words across and understood (via voice-to-text). I suppose you don't need to know this, or perhaps, you don't need to know anything at all, but I'm all about sharing. And sometimes I'm all about caring. And then there are times where I am so inwardly focused, uneventful hours pass by while I am daydreaming.

So here we go, let's get down to it, shall we?

Oh wait, I'm going to interrupt myself. I went to the hospital on Monday to get my feeding tube replaced. The pain during the event was excruciating. Yes, I'm admitting as much. It took the doctor nearly five minutes to pull the damn thing all the way out. Usually the most painful part of the procedure takes no more than a few seconds - I feel a tug, an internal pull, then sharp pain radiates outwards. Then the opposite happens a few minutes later when they insert the new feeding tube.

Next time, I'm looking to get some sort of sedation. Although, I really really do not want fentanyl again. The after effects really suck!

As a result of my feeding tube replacement activity, I had 18 consecutive hours without any of the usual pain - no bloating, no nothing. I felt damn good. I actually ingested 1200 calories in that period of time… which is a substantial increase over my recent daily intake.

But then as soon as I woke yesterday morning, as soon as I began chewing a harmless piece of gum I started bloating with my belly a mere 17 chews in. Yes, there was a massive expansion. And since then, I've been contending with heart palpitations. Regularly. Irregularly. You name it. The air / gas is getting blocked at the same place it always gets blocked. Somewhere near the superior mesenteric artery - if I'm measuring correctly.

So yeah, that's where we're at right now. Although the pain is not up to the usual standards, and I haven't needed codeine in the past three days. So hurray for opioids. Or the lack of opioids.


Goals, Objectives and Adjectives

This here is your official irregularly scheduled update. Yes indeed, things are quite irregular at this interval. So let's officially dive into the shallow end of the vagueness.

Relocation Allocation

Here's what it is — The action plan entails my moving out of the nursing home on the weekend of October 28th / 29th. The hope is that by then the temperatures will drop to a level that I can more easily tolerate (while living inside the garage). As an example, Monday's record thrashing temperature was 106°!!! And all those accumulated degrees smashed the previous record by a fair amount. Can you believe it's actually THAT hot in the middle of October anywhere in the northern hemisphere? Heck, anywhere in either hemisphere?

This time of year it's supposed to be no more than 85° during the daytime. Suffice to say, we are no longer in the Global Warming phase, we've now advanced to the Global Melting phase of our demise.

Anyways, if things work out as planned, I will also be acquiring a hospital bed to sleep on. Really, that option seems best, since the hospital bed is free (based upon my insurance provisions). Yep, I will take the free bed, versus the camping bed that costs $150 (out of somebody else's pocket). And nope, I do not have that kind of money.

The only other thing I need is a room divider, a kind of screen, so that when the garage door opens, people can't see my bed and other necessary necessities inside. Due to any number of reasons (mostly, HOA reasons), nobody is supposed to be living in the garage.

Duration

If things go according to plan, I could quietly and stealthily live in the garage through about April 1st. It's only ever been over 100° a few times in March, but once April hits, we begin experiencing 90s every so often. And then of course 100's occasionally. That's way too hot for me in a garage.

Note: someone raised the question in the previous blog entries comment section - but the garage is not worth insulating. Therefore, an air conditioning unit wouldn't do much good. Years ago I lived in a garage for one calendar year, and nothing helped. Nothing at all. Well really, the only thing that "living in a garage experience" helped was my pocketbook. I was able to pay off all of my credit card debt while living cheaply in a friend's garage. Although, the summertime was brutal. Absolutely flipping brutal!


Talk to Me

Another thing I'm trying to determine is if I should maintain communications with staff members, the ones whom I consider to be friends. I'm still working through that - so I guess I'll wait and see, wait to see who it is that asks for my contact information (if anybody). In the past I've been given numbers and emails addresses and from exiting employees, so probably maybe yes, that may happen again.

Beyond all this and all of that, feel free to ask me any questions, or make any sort of recommendations. I think I've got everything covered, but you never know.

In regards to meteorological concerns, no, I cannot control the weather. It's supposed to be in the 100's all week long. We will be breaking more records. This is nuts. It's nearly the end of October! It shouldn't be over 100°!!!

Oh, and I am still waiting and waiting and waiting and waiting to see if I get approval for SSI. The safe assumption at this point is that I will never be approved for anything. According to them. the Social Security people, it appears as though 90% of my whatever has been completed. It's been stuck at 90% progress for two months. Perhaps that's a good sign. It's better than being stuck on 17.3%.



Be good. Take care.
Howard





on my way back across the partially alit overpass (all of the copper wiring / electrical wiring had been yanked out and sold for scrap, in order to purchase drugs and such)

IMG_20231016_220353.jpg



Shouting into the phone from this locale -
IMG_20231017_205217.jpg

Comments

The only other thing I need is a room divider, a kind of screen, so that when the garage door opens, people can't see my bed and other necessary necessities inside. Due to any number of reasons (mostly, HOA reasons), nobody is supposed to be living in the garage.
If you can't get a room divider could your wife staple tarps to the ceiling beams?
 
Hey Howard......Well, I can't say that I like the sound of all that.

You'll go from summer to winter and bypass fall altogether. How are you planning to stay warm in the garage. Electric heaters, I guess & lots of lots of blankets.

Why did changing the tube hurt so much? Had scar tissue built up around it? Also, gum adds to bloating, trust me. It's good to have something, but not gum.

Which floor does you wife live on? I hope things will work out between you and I have no suggestions, except maybe a homeless shelter. Surely they'd be able to provide something, wouldn't they? At least decent shelter during the heat, although there wouldn't be any roaming in your wheelchair at night.
I still can't believe that you haven't heard from SSI. I'm glad you'll be able to roam, I just hope you roam in safe areas.

Yes, I'm sick to death of junkies and their "illness".....which gets a lot of press when you think about it. Everything is stolen and has to be replaced.

I'm still trying to figure out how my youngest brother had the stash he did when he died. Just don't start....and I know, I sound like Nancy Reagan. Good, sensible advice. But I've lived the life through many members of my family and no, they were aware of what they were heading into. There's nothing a family can do....it's an impossible situation. I just hope my kids and grandkids learned something.

Anyway, Happy Trails, Pardner. You'll still check in won't you? Will they ever be able to remove that tube....what's the prognosis? Yours, Lenora
 
That gum that you are chewing doesn't seem that harmless. There seems to be some ingredient your body doesn't want. For myself, I cannot chew gum anymore due to gastric discomfort. Just say no to that gum!

Well..........your journey is about to change and I hope it goes well for you. I imagine you are just about up to any change at this point. However, is there a plan B just in case? I'm sure you have thought about that.

Looking forward to updates :)
 
Agree with Tammy. Does your gum have Erythritol or another sugar alcohol ending in -tol in it? That could be causing the bloating.
 
How about bath and toilet in the garage?
And Wi-Fi?
Are you able to open the door on your own?
Electric maybe?

Good luck, looking forward to hear from your new “apartment “
 
It might be a good idea to stay in contact with the staff members that you consider friends just in case you need them one day.

Bit worried about your feeding tube pain...have you considered how to keep the area around it clean and infection free in the garage?

Your weather sounds crazy there....it seems to have gone crazy everywhere now.....yes, global melting indeed!
 
(all of the copper wiring / electrical wiring had been yanked out and sold for scrap, in order to purchase drugs and such)

How the heck did you climb up there to yank that wire out? And then how did you manage to drag it behind your wheelchair to a scrap yard to cash in? 🤣
I must say, your talents go beyond music and writing! o_O

Best of luck revisiting the garage days. Hey, it worked for Metallica and look where they are today ;) But that heat - you can keep it! Nice and cool and wet here in New England with lots of tree color this autumn. Perhaps you could design a space suit that is air conditioned inside?
 
@lenora

I will have access to a space heater, and as you mentioned, plenty of blankets. I'm sure I'll adapt.


In regards to the feeding tube pain / why it hurt so much … I'm not quite sure. That whole area is super sensitive and painful to the touch (moreso when bloated), so I guess it makes sense that the area would be especially tender upon removal of the apparatus. Plus, the doctor took his sweet time pulling it out, rather than giving it a quick yank and pull through.

I'd much prefer instantaneous pain and more severe damage, versus any kind of intense prolonged pain.

Floors?

She will be on the second floor. The garage is underneath. I won't have any access to the upstairs living area.

And overall I'm not all that worried about things. I should have access to a caregiver, possibly each day … unless they deem me to healthy. Which is possible.

I'm not sure how much help I'll require though. Sponge bathing is probably about the extent of it… I mean, I can bathe myself, I just don't have any direct access to hot water and such. So the caregiver would have to go upstairs, before bringing the hot water down to me directly. So this person better be in damn good physical shape! Water is heavy. Stairs are hard.


Speaking of SSI …

I just received a letter from Social Security and they want to interview me again, on Thursday. The letter says they're still trying to decide what they're going to do, in regards to approval or rejection. Apparently, they are not convinced and they require further proof. So yeah….

Yes, I will still check in (at Phoenix Rising), even if I do not have internet access. Although, I'll probably have to change my blog title. Or start a different blog altogether. Living in a Garage …. LOL

Thanks for checking in!
 
@Tammy @Judee


The gum has xylitol. So of course it's going to cause bloating. It's just so difficult, because chewing gum helps relieve mouth pain. And also, since I can't eat all that much food, it keeps my mouth otherwise busy.

In any case, I'm hoping to try some gluten-free dairy-free chemical free pudding in the near future. Once I have some money coming in. If that ever happens. And then also, branch out from the applesauce and maybe try some baby food vegetable style kinds of things… something by gerber.


You're asking if I have a plan B?

Haha!

No, I do not have a backup plan. Really. I don't. I'm just going to go with the flow. Not much flow in a nursing home. I require flow! Ha...
 
@Hufsamor

I will have my bedside commode in the garage. That and the urinal are something I can manage emptying on my own. But maybe someday I'll live somewhere that I'll have actual toilet access!

And yes I'll have access to Wi-Fi. At least, I imagine the signal will reach downstairs. I hope I hope. If not, it wouldn't be the end of the world as we know it. :)


The garage door is electric, and I will have a remote control, so unless the electricity goes down, I will have easy access.
 
@Seadragon


"It might be a good idea to stay in contact with the staff members that you consider friends just in case you need them one day."

That's true. The need for others may eventually come into play. I will, at least, sometimes, need assistance with things. Just probably not too often.


"Bit worried about your feeding tube pain...have you considered how to keep the area around it clean and infection free in the garage?"

After I had my feeding tube replaced, at least initially, the pain completely disappeared. So I know it's related to intestinal bloating / excess fluid content, rather than any type of infection going on. Well, I don't know that for certain. But that seems to be the most likely scenario.

And in a sense, the garage will likely be cleaner than the nursing home. My nursing home room has only been cleaned three times in the past 37 days. That's not much cleaning, when you think about it.

Additionally, my roommate still has ants and other bugs crawling all over him at night. He's not very happy about it. But no one does anything about the issue. It's been three weeks.

As an example, I had them change out his sheets and blankets last evening, and then an hour later the bugs were all back. They may be living in his mattress, or something. Who knows.

I have some bug action in my bed, as well, but I don't really care. Doesn't bother me. Plus, they don't really like me. They simply crawl across me heading somewhere else. Probably on their way to visit my distressed roommate.


Yes. Ridiculous temperatures here. We've been breaking records all this week. It's near the end of October and it's still over 100°???

At least next week it's supposed to be unseasonably cool. At long last. Temperatures in the low 80s. We should experience about 3 weeks of that, before we fall into the winter seasonal temps.
 
@Nord Wolf

Thanks for checking in.

I am a big fan of "Garage Days Revisited," Metallica's last triumphant effort. Actually, "…And Justice for All" came a year later, but then that was the end of that, in my estimations. Hahaha!

Unfortunately, the garage living situation is very temporary. Due to homeowners association rules, I cannot make any modifications. As a matter of fact, I'm not even allowed to live there in the first place. But hey, what the heck … right!!?
 
@Tammy

I'll have all my nursing supplies with me once I move in. So that includes the spray bottles y'all sent me last summer! LOL

In reality, nothing's really changed. In the nursing home it was nearly impossible to get any needed supplies. Logistics were horribly rotten. Out in the real world I feel as though I'll have more success attaining what I need. But then again, I have almost everything already. Hooray for me!

Bet you can't wait until you cool off, too!
 
She will be on the second floor. The garage is underneath. I won't have any access to the upstairs living area.
Would you have access to the stairway at least? Like with a ramp? Just wondering if that area would be a bit warmer when the garage is cold. (And vise versa on the hot days. ??)
Although, I'll probably have to change my blog title. Or start a different blog altogether. Living in a Garage …. LOL
Just change the title maybe. If there's two we (I) might get confused. Naughty brain fog. :(
 
Thanks for checking in.

I am a big fan of "Garage Days Revisited," Metallica's last triumphant effort. Actually, "…And Justice for All" came a year later, but then that was the end of that, in my estimations. Hahaha!

Unfortunately, the garage living situation is very temporary. Due to homeowners association rules, I cannot make any modifications. As a matter of fact, I'm not even allowed to live there in the first place. But hey, what the heck … right!!?
I would check in more often if either my eyes or computer would cooperate more! With vision loss and my computer’s dictation ability quickly failing, the state has offered to buy me a new computer. But… they have to check their budget they say. I guess that means the state is so strapped with lining their pockets that a computer might be unaffordable. After serving the country for 18 years in conflict zones, having 4 cardiac arrests on the job, because of the job, having had been captured and tortured three times, and ending up with hearing loss and slow vision loss from acute close proximity exposure to explosive concussive force that resulted in inflammation and bruising of the visual cortex and prefrontal area of the brain… it seems that wasn’t quite enough to qualify for a new computer. o_O See I inconvenienced them by having developed multiple pesky life flattening neurological diseases. 🙄

I agree, the old Metallica was their best performances!

The garage living in your neighborhood will certainly take some stealth effort it sounds like. I hope you get the qualified stealthy people to help you out!
 
Re SSI: I would seriously consider getting a lawyer if this up coming interview does not go your way. No money required up front with Disability Lawyers. (not that I know of).
 
If you eventually qualify for SSI, would you be able to afford to rent a ground (first in USA?) floor room if the garage gets too hot for the summer months?

Your "unseasonably cool temps in low eighties" sounds great to me now. I'm already desperate for warm sunshine again here in the UK and it's only October - like you, I feel a bit less weak/slightly more energy with full sun exposure. I think I remember reading Nordwolf is the same.

Crazy that a garage sounds cleaner and more pleasant to live in than a nursing home - good that your former wife will be so close by, she sounds supportive.
 
Despite my roommate moving his broken squeaking squeaking bed up and down repeatedly overnight (especially between 3 and 6am), I slept some… just enough to respond to these comments in a coherent fashion. Maybe …

@Judee

Being situated at the base of the stairs wouldn't be an option. The landing area is too tiny for my chair.

Also, the heat is not likely going to be an issue going forward. This week it's supposed to be in the 80s. Next week, possibly it'll be in the 70s. And for the most part, the temps only get down into the 40s at night during the winter (with some exceptions) - which isn't too bad.

And yeah, changing the title is likely the best option. :)


@Nord Wolf

Wow. That would be absolutely frustrating. Hang in there.

When I was finally able to put together coherent sentences, voice-to-text was a godsend. Still is.

I have another interview with Social Security on Thursday (for SSI). Of course, I haven't gone through anything that you've gone through, but yeah… lots of red tape. Green tape. Christmas colors, I suppose. Ceaseless frustration. I think that's their aim and objective.

Now I have to call my primary physician's office to see if they'll extend my pain meds. They just told me yesterday that it takes 30 days to arrange that… and I'm moving out in seven days …. Thanks Administrators of Doom! Lol
 
would you be able to afford to rent a ground (first in USA?) floor room if the garage gets too hot for the summer months?

That's the plan. There's no way I'd be able to survive in a garage beyond April.

And if SSI falls through (or I recover / improve enough by then), I plan on finding a job.

Then again, I also believe I'll be walking next year, as long as I'm able to continue pushing my sunlight exposure (vitamin D).

good that your former wife will be so close by, she sounds supportive.

Right. That's one of the main reasons why I am confident in doing this.


Also, a couple of years ago my UVB light helped me raise my vitamin D levels overall (couldn't go outdoors) ... helped improve my symptoms. Incredibly expensive though.
 
Hi Howard.....One perhaps not too heavy way of getting hot water down to you would be via 2 hot water bottles, with towels so the the carrier doesn't get burned.(You can use the towels, right?)

Your cold water is probably like ours here in Dallas, in the winter. Cold, but not like the icy cold in the north. I'm sure you'll do your very best.......and try some Biotene for dry mouth and perhaps to help keep it clean. Yours, Lenora
 

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