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    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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Status (Stasis) Briefing - Vitamin D Resistance

Resistance is _________

I'm fully latching onto and into the Vitamin D Resistance realm. It just makes too much damn sense. Each of you already knows the details, as incessant exposure to direct sunlight improves my physical energy state (whereas a lack of sunlight severely detracts from my energy envelope). I won't go into that right here and right now, but that's the direction I'm heading right now.

Despite having found a local doctor here that administers the Coimbra Protocol, I cannot participate. Doing so requires at least 2.5 litres of water per day. And that's not possible, much due to my feeding tube and the related complications / restrictions that would come into play.

So, finding alternate methods to increase my vitamin d (above and beyond bleaching my brains out in the desert summer sun) has been a focus.

Hopeful Liquid

I should have my new feeding formula today. I hope. Liquid Hope, to be specific. It's got far less protein than the formula I'm taking right now, but that can be worked out later if I do not have a bad reaction to the formula itself. Right now, anytime I utilize my feeding formula I blow up like a hot air balloon. And then all sorts of other issues come into play. Mostly painful. Unless I just lay down flat in bed. For hours at a time. Or even all day. That's not something I want to give up, my freedom to move around in this world.

So here's hoping the new formula (with five varieties of protein, versus the one type of protein in Kate Farms) somehow reduces my extreme intestinal bloating.

Results Resulting in Answers

Within the next 30 days I'm supposed to receive results regarding my muscle biopsy. My expectation is that they will find out absolutely nothing. Because that's the way this illness works. Or whatever it is that ails me. It's up to me to resolve, discover, formulate, and fix myself. And the same goes for you. Good luck to us all!

Or, if you happen to be religious, God Luck to y'all!

Sleep Less Mess

Instead of struggling multiple times to get back to sleep overnight (interruptions interruptions, near constant interruptions) I am instead getting out of bed at a very very early hour and heading out on the road. If I'm not going to sleep, I might as well be out there. Plus it's getting too damn hot to be outside (for prolonged periods of time) during the daylight hours.

The only side effect of this virtual sleeplessness is that I'm getting dizzy in the evenings fairly often. I'm assuming positions and disorientation because of the sleep deprivation. Or maybe it's the after effects of the codeine. 24 hours later. And then also, my mental acuity varies greatly. Sometimes the sleeplessness enhances my creative methodologies, while other times I feel like a big dumb dumb. A numb dumb dumb. A dumb dumb taking nunchucks to the skull. Repeatedly and without purpose.

At least, and this is rather surprising to me, the lack of sleep doesn't seem to be as packed full as it was when I was in really really bad shape. I mean, yes, my energy level decreases by 20 to 30%, but I can still function at that level right now. Before, that level of energy degradation left me motionless in bed.


I won't get into anything else here. This is merely an update regarding my physical condition and status. Not too exciting, huh? I do, however, I have had lots of interesting socialization experiences of late. Observations. That sort of thing. Which I hope to include in my next entry. And also, I hope my writing quality increases. I am writing things in the background, taking notes, making observations etc, but the words are kind of clumpy and clunky and full of cluttered cliches.


Take care,
Howard


In Darkness I Compose

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The Sun Also Rises (in Phoenix)

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Captivated or Captured?

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The Early Morning Affords

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Vitamin D Resistance:
https://www.frontiersin.org/articles/10.3389/fimmu.2021.655739/full

Comments

Vitamin d was supposed to save me, on my second trip to visit my daughter, the one that lasted three months.

But instead, I got intensely POTSY. Back home again, I am somehow Orthostatically Intolerant but not that POTSY.

Bummer it didn't.

But clearly it helps you, @Howard.

Maybe you expose more square inches of skin.

By not expecting any result, it's possible you might get a result. I wonder how many of us are going to sign up to HOLD our breath while we await, Your Pronouncement? (n= nearly zero, I suspect)

- QUESTION for you- my doctor was really pushing on the issue of the body's anti inflammation cycle between 10 Pm and midnight.

do you take advantage of this window for sleeping? (I don't, I tend to stay up until 1 am)
 
Maybe you expose more square inches of skin.

Right. I have LOTS of skin exposure... Not saying it would work for you though. I would imagine your skin is not as agreeable to sun exposure / tanning.

do you take advantage of this window for sleeping? (I don't, I tend to stay up until 1 am)

I typically stay up until about midnight.

The first time I get woken up is around 3:00 a.m. (roommate's first diaper change), then around 4:00 I am woken up again (roommate meds). And then around 5:30 a.m. (second change) and then finally at 6:30 a.m. for vitals to be taken.

Sometimes it's only three of these times, and other nights it's all four times being awoken by bright lights and banter.

But I really really should take advantage of the 11:00 p.m. to midnight time slot... Instead of watching an episode of Star Trek: Deep Space Nine! LOL
 
The first time I get woken up is around 3:00 a.m. (roommate's first diaper change), then around 4:00 I am woken up again (roommate meds). And then around 5:30 a.m. (second change) and then finally at 6:30 a.m. for vitals to be taken.

I"m going to have to find out some similar statistics for my husband, if we spring him from the joint in August (the current plan).

My husband better being doing his own 3 am diaper changers....(uh oh)...
 
Right. I have LOTS of skin exposure... Not saying it would work for you though. I would imagine your skin is not as agreeable to sun exposure / tanning.

Either I might blind somebody driving past (the glare of white skin)....(with dots)

OR: if I deploy my lawn chair, I tend to pass out or fall "asleep" quickly, then the whole neighborhood would "see". I need a large sombrero, then I can just nap privately.

I heard that, if I managed to expose my legs to the sunlight, thats only about 10%....so 90% is lacking rays. And its gotta be that full on sun, not the 4 pm version....
 
I still think you should have been a photographer.

I'm amazed that you're just taking pics with a camera phone and just around where you are staying now and they are still really excellent.

You just seem to have an eye for it.

Edit: I thought this was just Kindle books but skim reading it now, it sounds like it could be paperback or hardcover books as well. You could set up a book this way...maybe a coffee table photography book and then it would only print the book when someone buys it...I think....research and see if that seems what it it saying.

Here's another site. They're called Print on Demand books. https://www.lulu.com/
 
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https://www.gelato.com/products/calendars

Order one first to make sure it's satisfactory to you and then post them on Etsy.com maybe but only as print on demand so you don't have to put out a lot of money and have a lot of inventory sitting around.

Someone talked about doing that with mugs in this VIDEO (which you could also do) however I think his figures are probably way unrealistic and meant for clickbait clicks (possibly he even works for the company making the mugs??).

Edit: I like calendars with actual squares so I can write things in the boxes and also Sun thru Sat rather than the other kind that I've seen which I put Sat/Sun at the end of the week. :cautious:
(I'm just assuming others would like those kind of features as well.)
 
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Just a little ditty that happened to me regarding getting some sun. This happened years ago. One day I decided I wanted to lay out in the nude in my backyard. Neighbors couldn't see due to the brick wall. Well, wouldn't you know on this particular day all of a sudden I see an electrician climbing up the light poll to fix something. He got a full view !:p🫣
 
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I heard that, if I managed to expose my legs to the sunlight, thats only about 10%....so 90% is lacking rays. And its gotta be that full on sun, not the 4 pm version....
With your pale skin, I'd suggest you be very careful. But starting out with 10 minutes of sunshine on your core areas would likely be sufficient. If you can eventually make it up to 20 minutes that would be simultaneously grand and fantastic!
 
I still think you should have been a photographer.

Thanks. People seem to think I do a decent job photographing things, so you may be on to something!

And those are great ideas with the calendar and the picture books. I think maybe with additional descriptive or storytelling words affixed I could possibly earn some income. I'll definitely have to look into these options once I am approved or disapproved for SSI.

I appreciate your efforts. :)
 
all of a sudden I see an electrician climbing up the light poll to fix something. He got a full view !

That's super awesome!
We need moments in our lives just like that. Moments that enliven us, make us feel real from head to toe, inside and out, and all points in between.

Since I've been in nursing home over 200 people have seen me fully naked. After the first dozen, it doesn't quite make a difference anymore.

Oops, head to edit that. Slurring my words. Sleep deprivation does that. Had to edit. Edit to head. Had to edit. Actually had to edit makes sense. Had to edit makes sense. Had had f****** head what the f*** the word had had there we go had now I can't differentiate between head and had had had had had had had had my head hurts my head hurts
 
Good to hear from you Howard - nice pictures btw.

Sitting in the sun is a great therapy for me. I watched my blood pressure decrease by 10pts from sitting in the sun. I then found out that the sunlight stimulates the production of nitric oxide. And of course, NO is a vasodilator so it brings down the BP.

NO also is a signaling molecule that has a wide range of benefits which includes the immune response. There is another molecule that sun stimulates which is PCG 1 and I am sure many other pathways.

Sorry to hog the thread - good to hear from you!
 

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