(Back) Bed Bound and Beyond

September 3rd (Sunday)

I've been stuck in bed for the past six days. Something went wrong, likely initiated by my new feeding formula.

I had "the runs" for 24-hours, and ever since, I've felt exhausted, poisoned, and shaky. I sweat profusely when sitting upright. And my bloating and stoma pain are borderline unmanageable.

This is how I used to feel when I first became ill, way back when (minus the feeding tube complications). Of course, I am feeling defeated. How do I fix this? What exactly is wrong with me? Am I back to being bed bound again forevermore?

I am extremely unhappy right now, in this moment.

More

I must manually inject my feeding formula (Liquid Hope) into my feeding tube every 30 minutes or so - because the formula doesn't flow through the feeding pump apparatus (too thick / coagulates in a short period of time). The Nestle Compleat (Peptide 1.5) was the offending feeding formula. I think. The one that gave me diarrhea and made me sick like this. And then I had a bottle of Kate Farms overnight and I'm having terrible pain and bloating as a result (not that the Compleat was any better).

So yes, it's got to use the Liquid Hope going forward. And I've got to manually feed myself at least once at short intervals if I even hope to approach 1500 calories per day.

Since I'm in bed all the time (again), I've really got nothing better to do. I had my year's long run of fun, and just enough freedom to make my life temporarily satisfying. That was my gift. Now it seems I may be through with that. Indeed, life is killing me again (hopefully, ideally, only temporarily!!!).


September 5th (Tuesday)

It's been eight days now. And I'm still grounded - my body failing me, yet again (mostly just exhaustion and weakness now). But still, I try not to consider my sudden unceremonious demise. Considering anything at all (right now) is upsetting. So I forage ahead. Yes, that's exactly what I am doing. I am foraging for minute-to-minute sustenance (on all fronts). Ideals and ideas to latch onto. Items and objectives to have and to hold.

I received my zinc supplement this morning. I am half assuming my lethargy is related to sudden zinc depletion after my recent excrement implosion. At least, I hope it's something simple like that. Or possibly covid-19. That could be the cause, right?

No fever during my ordeal, but I did have chills the day before "the runs" kicked in. And then also (hours after my bout initiated), a several hours long headache, wherein I experienced shooting raw nerve-like pains throughout… my skull being exceptionally sensitive to physical touch (or even gentle pressure exerted).

Odd components.


Not Alone

I'm earmuffed in the moment, listening to a song ("Bete Immonde") by Griiim. Black Metal. That's the genre. My roommate is in the midst of his in-room therapy session, so I give him his privacy by forfeiting my quietude. And now it's into the chaotic microtonal metal abyss with Jute Gyte's "At the Limit of Fertile Land."

If I'm going to blot out sonic intrusiveness to the fullest, I might as well do it right.

Hmmm… only 37 minutes left in his therapy session.

Oh, and as of 23 minutes ago, I no longer have access to the Star Trek franchise. My former roommate (Sam the Deceased) must have let his subscription lapse (and truly I don't blame him, something he may not have foreseen). And truly, I rely upon the many iterations of Star Trek for my daily dose of screen time - something to watch that's not all that taxing, yet still satisfying on all the necessary levels.

I've still got Netflix access, though. Perhaps venturing forth and back into Asian content could/should be on the agenda… sometimes the subtitles don't cut it.

Oh, Deceased Sam's widowed bride broke both of her legs crashing her power chair (not too long ago). She tried to make a right angled sidewalk turn, clipped the edge, and went slightly off into the gravel. With the sudden weight shift, she tumbled out of her chair, and then the 400-lb behemoth landed on top of her.

14 Minutes Left

And a therapy person suddenly appears (the one with a good case of the smiles), asking to get my bodily weight. But I am not getting out of bed today, so no scale excursion for me.

And it seems my roommate's therapy session ended. No one told me. I was halfway through "Interstitial Parasite" by Natanas when —

Excess Wait

I pushed my "help" button at 0931 hours (well before the therapy session). It's now 11:37 a.m. (an hour after my roommate's therapy session concluded). If you do the math, that's over two hours of waiting. However, if you do the meth, you don't sleep for several days running.

Foreboding / Forewarning

One of the dedicated super CNA's from Unit 1 was assigned to our area this morning. But, that's not a good thing. My initial assumption had me believing she was being punished - likely for working too hard, and showing up (lazy / unmotivated) others.

"They took me off the schedule for October, all except five shifts!" The conversation began.

You see, she and The Scheduler do not see eye to eye. For some reason, The Scheduler dislikes this favored former Employee of the Month All-star CNA. Beyond that, any rhymes or reasons (on my behalf) are purely speculation. So I choose not to speculate. But there is a certain type, a certain kind of person who seems to be unfairly treated. And usually these types are my types - the kind of female employee I myself would hire on / regularly deploy.

In any case, it seemed as though there would be some kind of in-person confrontation sooner than later. And based on the result (our CNA no longer being here), I'm assuming she walked out - walked off the job.

So that was likely two hours ago. In the meantime, no one else picked up this area, or got reassigned to take care of us. Which isn't unusual. That's par for the course in our section. We have a veritable murders row amongst the rooming residents - basically, we're the neediest of them all!

But the thing that's funnier than funny is that after waiting and waiting and waiting, I finally called up to the nurses station directly, and within two minutes, someone was in the room taking care of us. Clearly, they saw my caller id on the nurse station phone. Realizing there's "Howard" involvement, they saddled up and got on their horses.

The main concern from my end involved my urinal being filled to the brim - you know, those plastic bedside things they have in the hospital for dudes. Sure, I could have held it longer, but I've already got the issue with bladder stones, shooting out near constant rounds (and other shapes) daily.

Choose Your End Destination Wisely

So yeah, if your weary and well aged bones are going to be offloaded somewhere, someday, might I suggest the open desert instead? Well, that's my preference. It's a more dignified way to spend last days on the sphere of earth.

In the meanwhile, I've got music to make, and a stucco wall to stare at (outside my window). Oh damn, I just noticed that the palm tree they killed (failed to water) has been summarily removed. I must have missed that excitement. The removal of the palm corpse.

Note: the only only only person and employee who waters the plants out in the courtyard, also happens to be the CNA female who walked off the job today. That's right, living in the desert we have no one to keep the plants alive, so they must die! At least the staff members water the residents fairly regularly.

Anyways, I do get a mega-sliver of blue sky view, free of charge. And then of course, there's the reflected light bouncing off of the faded, dated, and degraded stucco surface. Yes, lots of natural lighting. So don't weep for me, Argentina!

The shallows becken wooden vessels from afar, but despite their haste in so doing, they must at once steer clear of that senseless objective, instead choosing to wreck themselves upon the jagged coral reef. Ballast be damned!

Sorry, a flashback. The Poseidon adventure meets Robinson Crusoe versus (20 years ago) Tom Hanks and his psychotic volleyball (the one lost on the float).


Take care,
Howard



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Comments

Oh, Howard. :(

Can you get back on your old formula and quickly? Would that help reverse this situation? I hope. (Just able to read the first section right now. I'm sorry. Will have to come back for the rest. Maybe you address this further down.)
 
Can you get back on your old formula and quickly?

With the old formula (Kate Farms) I had to take codeine on a near daily basis, due to the extreme bloating and related discomforts. I bloat uncomfortably with the Liquid Hope, but to a lesser degree.


Somehow, late last night, I felt notable improvement to my overall energy - so maybe the zinc gummies are kicking in already - or not


Hope things are somewhat decent for you of late :)
 
I wonder if you're having a problem with the pea protein. I couldn't use that because of allergies. Also the hospital dietician told me that some people with a soy allergy also develop an allergy to the pea. It's a cross reaction. My Mom was more allergic to pea so she chose the soy protein for my Mom's TPN.

All that to say, they make beef protein or chicken protein that is that one ingredient only (although I did notice some of the powder mixes also have egg in them. I do not do well on egg so would personally avoid those.)

Here's a chicken one: https://www.amazon.com/Ancient-Nutrition-Protein-Powder-Servings/dp/B01DOBJ84U/ref=sr_1_2_sspa?keywords=beef+protein+powder&qid=1694115274&sprefix=,aps,130&sr=8-2-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&psc=1

I would think the bone broth ones would be better than the isolates...but just my uneducated, unresearched thoughts on that topic. Maybe they're all made the same anyway. ???

Also calories would still be a problem and these also do not look vitamin/mineral fortified. :(

Alternatively, you could call the formula companies and ask if they have any made w/o pea protein if you start to suspect that is the offending substance but I'm pretty sure they'll tell you the alternative is dairy which I don't think you can have. Am I correct?

Edit: Maybe this is a little better but my brain isn't letting me research right now though and I see something green on a spoon in one of those pictures so maybe that still includes pea protein. ?? :( https://www.amazon.com/dp/B01LYGPZ36/?_encoding=UTF8&pd_rd_i=B01LYGPZ36&ref_=sxts_sparkle_sbv&pd_rd_w=1VCnY&content-id=amzn1.sym.cd95889f-432f-43a7-8ec8-833616493f4a:amzn1.sym.cd95889f-432f-43a7-8ec8-833616493f4a&pf_rd_p=cd95889f-432f-43a7-8ec8-833616493f4a&pf_rd_r=6696EQS363CP7QHP8QMT&pd_rd_wg=oQlmH&pd_rd_r=4b78b3a0-4549-4e90-8eb3-97b3a3087979&pd_rd_plhdr=t&th=1

Edit 2: I forgot there is also pumpkin seed protein powders: https://www.amazon.com/Organic-Pumpkin-Protein-Vegetarian-Horbaach/dp/B07QC4ZRM8/ref=sr_1_3?crid=DDWF4D4VHK35&keywords=paleo+protein+formulas&qid=1694123008&sprefix=paleo+protein+formulas,aps,161&sr=8-3
 
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I wonder if you're having a problem with the pea protein.

Yeah, that's one theory. The Liquid Hope has some pea protein, but not nearly as much as the others. And so far, it's been much more tolerable overall ... just burdensome doing the bolus feeds.

I'm going to go with it for now, and then try to resolve my other issue.

Whenever I sit upright for longer than 15 minutes, I start overheating - sweating profusely - then I need to lay down again.

Utterly frustrating.

Appreciate the info!
 
:ill::cat:Hello Howard,

I just read your blog and well, I'm truly sorry that your life has taken such a turn. You were so happy just a short time ago.

I wonder if it's common for these changes to cause so many problems? Yes, you may have COVID again. Rod has it and it's one of the newer strains....so after 5 immunizations, here we sit just waiting for it to end. (And then I'll probably get it!) So be it.

A friend in the northeast told me that everyone she knows has it.....winter doesn't sound too promising, does it?

I hope the bloating and other problems will get better with time. Have you noticed any difference in that? It does sound like you have something else going on.

I'm sending good wishes. Your wheelchair and I both miss our more carefree Howard. Oh, gorgeous clouds in the picture. I hope you're off the toilet by now!! Oh, the pictures....well, that's how you feel now and I sent a little something for you to cuddle up to. I hope you aren't allergic to fur.

It's 74 degrees as I write....and it's freezing. I think I've adapted to the heat and I'm not looking forward to winter. So take a sweatshirt & wear jeans if you happen to go out. Don't let them take your wheelchair....chain it to the bed. Please feel much better. Yours, Lenora
 
Are you feeling any better at all Howard?


Thank you for the well wishes!


I should probably tell you that everything is grand. But the pain related to my feeding tube is all encompassing. I'm having to completely stop my feeds / water intake for longer periods of time.


And then when I get out of bed, I've got about ten minutes before I start sweating uncontrollably, then there's the subsequent dizziness, then the overall weakness kicks in. This is not good. And I'm seriously depressed.


Saturday wasn't so bad. Sunday was not good at all. In that regard. And today I'm going to try scheduling to have my feeding tube replaced at the hospital. Or perhaps I'll simply roll over there on my own today (as an act of defiance) and request that the hospital people do something. Anything.


The feeding tube / bloating issues and the post-covid sweating and weakness are unlikely related.


So, I apologize for dispensing this unfortunate news regarding my current state and standing. Perhaps it's someone else turn to be better, to improve, to experience temporary joys and freedoms.
 
The feeding tube / bloating issues and the post-covid sweating and weakness are unlikely related.
Post covid sweating? Didn't realize you had in fact tested positive. Damn it anyway. Sorry.................you must be feelin a fright with the combo of post covid and your feeding tube. No wonder you're depressed. Hope you have pain med on hand.

I think we all want to know how you are doing even if it's not up and happy news................so don't feel bad about sharing the not so good news. It's the reality we are all living to one degree or another. We all want to know how each other is doing....good or bad.

Just got over a flu bug myself and fortunately for me it wasn't too bad.


I sure hope you can get the feeding tube checked out pronto.

Hang in there Howard. Wish I could be there to hold your hand and give you a hug and maybe even have a laugh or two about who knows what. Just know we care so please keep us updated as you are up to it.

XO
Tammy
 
Ok so maybe you can have a little laugh at my expense about something I did (or almost did) several weeks ago.

I called the manager of the apt's I live in to put in a work order for my toilet. The maintenance man schedule for repairs is always in the afternoons. The mornings are scheduled for yard work.

Day of scheduled repair, I was getting ready for my shower. Maintenance man not due till afternoon so plenty of time to take it in a.m . As I have always done for years, (for whatever reason) before I take my shower, I put my my bra and undies on top of toilet lid. I'm about to step into shower when the doorbell rings. Damn it..........it can't be the maintenance man already. I look through the peep hole and sure enough it was him.

Fast forward, Will is done with toilet repair..............I thank him and he leaves. As I'm heading back toward the bathroom to prepare for my shower, I noticed that he has left something on the bathroom counter..........work rags perhaps? I don't have my glasses on and this particular morning my vision obviously wasn't worth shit. I figure I would hurry and grab the supposed work rags and head out the door to catch him and tell him he had left a few of his things. I'm out the door and about to call out his name when I noticed that the things I had grabbed that I thought were his work rags were actually my bra and undies! He had taken them off the toilet lid so that he could do his repair and then placed them on the bathroom counter...........so my CFS brain wasn't correlating that it could be something of mine as my things were supposed to be on the toilet lid. Well............I can only imagine what Will's reaction would have been had I caught up with him and told him he forgot his things.:headslap: I could feel myself turn red at the thought but soon I was chuckling about it. Also made me feel old because that is something an old lady would do. LOL.

The other thing I had a chuckle about is that he saw my bra. Now normally that wouldn't be a big deal but my bra is one of the most hideous looking bras ever! Because of my sensitivities to certain things, wearing a bra has been one of the most uncomfortable things ever to wear. The only time I put one on is when I have to go out in public. So...........I have cut on this bra here and there and everywhere to try and make it more comfortable.............it probably doesn't even look like a bra to some at this point! My Daughter always makes fun of me for it and always wants to buy me a new bra.

Anyhoo..................I had a good chuckle throughout the day pondering all the different reactions from Will had I caught up with him and handed him my pitiful bra and underwear.:p
 
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Well, Tammy. I'm sure you made Will's day without even knowing it....and I'm also sure that it wasn't anything he hadn't seen before. If it was, it was definitely time for him to do so.

I do the same thing. Anything with elastic is immediately introduced to scissors. Bras, elastic pants, anything that aggravates my waist. No, I don't look pretty and I never wear a bra unless I'm going out. Usually once or twice a year since I've given up doctors.

But yes, I can imagine that you were flustered. You're a good tenant, that's for sure. Yes, Will would have been totally mystified and figured that you were coming on to him! Good going. Yours, Lenora
 
See how much you have to offer, Judee? You're wonderful at finding products, giving addresses and so many other things. Do you also have a feeding tube?...you never mentioned it, although I could have missed it.

Also, I didn't realize that you were recently hospitalized. I hope it wasn't for something really serious (although they don't hospitalize you for nothing), but at least hope you've recovered somewhat. If that's the case, stay well.

Does anyone come in to help you out a few times/week. It concerns me when people are alone. This time I'll add you to my prayers. Yours, Lenora
 
Perhaps it's someone else turn to be better, to improve, to experience temporary joys and freedoms.
thats a really nice way of looking at personal misery.

I had a good chuckle throughout the day pondering all the different reactions from Will had I caught up with him and handed him my pitiful bra and underwear.:p
thank you for this lovely distraction from our other enjoyments.

wearing a bra has been one of the most uncomfortable things ever to wear.
they are AWFUL

who INVENTED THEM? (I"m sure a thorough review of corsets resides somewhere else in PR)

except for the laces etc, I'd be voting for corsets. At least maybe it would help me stand up. Propped up by whale bones, or something.

Damn it..........it can't be the maintenance man already. I look through the peep hole and sure enough it was him.
and we are the types to have a robe, waiting right where we need one (NOT)

I now have people around, suggesting I'm supposed to be properly dressed around these other people.

Well that clearly is not fair.

The only time I put one on is when I have to go out in public.
Yes, and the first thing removed, when you get back.....
 
@Howard I'm a long time lurker on your blog and have absolutely loved reading about your fascinating adventures out and about this summer! :)

I might be stating the obvious but my FIL had a stoma and a small tear in his bowel also for years after surgery for colon cancer (he chose not to have the bowel tear repaired) and your recent symptoms sound a lot like when he developed a chronic and rather serious infection in that area, especially the chills and overheating combined with weakness that is different from or more than is usual for you.

I hope you are somehow able to access a decent doctor/specialist soon who can investigate this further. If the area around the stoma is infected or you have a bowel infection, it wouldn't be a great idea to let it linger on indefinitely, especially as you are also in such pain and the feeding formulas are causing issues.

It does sound like you are left to manage your condition with not enough expert medical help. :(

I'm sending you gentle hugs and hoping you feel better soon. :hug:
 
Yeah, I agree with @Seadragon, please get that checked very soon @Howard. You don't want to develop sepsis. :(

@lenora, no, no feeding tube and no workers. I'm blessed in that I can still get some meals for myself and there are so many places that deliver now.

Everything else pretty much goes undone though. Oh, well. (shrug)
 
my FIL had a stoma and a small tear in his bowel also for years after surgery for colon cancer

Thanks for responding -

Chronic infection is a possibility, but right now my immediate plan is to deflate my J-tube balloon tomorrow morning, to see how much fluid is actually in there.

I'm hoping an overinflated balloon is the cause for my continuing pain.

My former wife is purchasing locking luer syringes and sterile water so that we may secretly perform the procedure out in the parking lot (behind the yellow van).

Note: I've been trying for several months to get professionally trained people to perform this procedure, but none will do so. This includes my gastroenterologist, several nurses, and the physician's assistant.

I think I'll be able to figure it out, but there aren't any instructional videos. Well, there are for g-tubes, but none for the jejunostomy tubes. But it seems the g-tube people do this kind of thing all the time, so how hard can it be? LOL
 
Update:

So it seems I'm allergic to water again. Straight water, through my feeding tube. Or sometimes feeding tube flushes. It's the same thing that used to happened to me when I first became ill with the mysterious illness, whatever the hell it is that I have.

So yeah, quite often, anytime water goes into my body I break out into an impressive sweat, burning from the inside out.

So really, I suspect covid-19, or whatever virus it is that I contracted 3 weeks ago, set my autoimmune system back into attack mode, or my autonomic nervous system.

And now, I'm experiencing post-exertion on malaise rather severely, whenever I do anything physical.

The ramp up on this has been incredible.

In any case, as soon as I stop burning up, I'm going to do my best to get some sleep. It's 69° here, so it's actually kind of cool. Or it should feel that way.

I have made the effort to go outside into the direct sunlight twice a day for 15 minutes a pop. I'm hoping the vitamin D will offset whatever is going on with me.

Alright then, wish me luck . :)

What's weird is that my vision has gotten a lot worse in the past couple of weeks. I'm having a really difficult time reading things. Very very blurry
 
@Howard,

Look, I don't want to scare you, but blurry vision was one of the earliest signs I had of my electrolyte imbalance. Then my right eye went....no vision and my l. leg (go figure). Anyway, it was the beginning of a long summer with one problem after the other. With not getting your nutrients something similar may be occurring.

The doctors have been pathetic. Yours, Lenora
 
No fevers at all, just overheated internally - all other vital signs are normal

Vision just blurry closeup - my electrolytes seem to be okay, but I am slightly calorie deprived

I'm hoping direct sun exposure will reset my autoimmune system
 
will reset my autoimmune system
Have any doctors tested you for immunoglobulin deficiencies and/or done any antibody tests? Maybe that would mean you could get some IVIG and/or some Rituimab like Gingergrrl did? I think at one point she also mentioned a water allergy.
 
Have any doctors tested you for immunoglobulin deficiencies and/or done any antibody tests? Maybe that would mean you could get some IVIG and/or some Rituimab like Gingergrrl did? I think at one point she also mentioned a water allergy.

Interesting. I'll ask when my doctor comes back out, but it's highly unlikely that type of effort would be made. I do not have any troubling symptoms (from their perspective).

In any case, I am improving gradually / slightly.

Yesterday I went outdoors 4x (at 15 minutes each), bombarding myself with uvb sunlight - in hopes my autoimmune system calms down.

Thanks for the suggestions :)
 

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Howard
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