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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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Not Exactly an Emergency / The Beat Heat ManifestoI would suggest trying one of the over the counter products by Nestlé first. More affordable. The Liquid Hope and the Kate Farms formula cost... -
Not Exactly an Emergency / The Beat Heat ManifestoIs this the product you have been using ? https://www.functionalformularies.com/product/liquid-hope-peptide-high-protein/ I might have to get... -
Not Exactly an Emergency / The Beat Heat Manifestothe landlord sent the workers there, unsupervised, and so technically they paid the fine. but then nobody turned the power back on. Details...
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Not Exactly an Emergency / The Beat Heat ManifestoThat was mean esp since I cannot see how any of that was your fault.
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Not Exactly an Emergency / The Beat Heat ManifestoOh the door looks bad. Found myself here, in this new abode, with two automatic garage doors with like bicycle chains that pull one or the other...
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Fell free to add your own biochem mystery in comments or of course suggestions or expertise welcome
I tried to start a new blog since this is not related to Covid but I don’t know how to do that if anyone does please let me know
Happy to discuss the biochem
Pathway in nitty gritty detail...
Today, I took my first bath in many, many years. In an inflatable tub in my bed. My Angel nurse friend helped me.
Tears streamed down my face as I realized what was getting ready to happen.
It was a bit difficult to have the pump next to me but once I felt the water, I turned into a 5 year...
The most dangerous thing any adult can do today
is walk into a psychiatrist’s office —Dr Peter Breggin,
American psychiatrist
Well, blow me down. Who'da thunk it?
Altho someone should have, what with the explosion of...
I had a very difficult go with our psychiatric system and their medications (for severe panic disorder and episodes of depression) and ultimately I believe, for me, they massively contributed to me becoming unwell. My downfall began in this same window. And although I won’t get into it as I...
Told the doc i STILL have sinus infection. He asked if I have spring allergies. No ,i said, and the allergies I get dont give me thick green secretions every day. He nodded his head yes in agreement- but offered no suggestion or advice
I show him scalp and showed him
How just touching my hair...
I was listening to half life by arcade fire lots this weekend and then this Khalil Gibran poem came to me Sunday.
One of my favorite poets.
Thought I would share. 💛
“Do not love half lovers
Do not entertain half friends
Do not live half a life
and do not die a half death
Join
If you choose...
Recently, i was left alone for 3 days BUT with my children this time. One is 18 and requires a different kind of attention to the newly turned 9 year old. This may be a normal week for most mothers....but not me. I am not most mothers because i am unable mostly to take care of myself. BUT i have...
Somewhat surprisingly, I'd never actually been to the Music Instrument Museum - despite having collected, played, and recorded a wide variety of musical instruments for my own music-making purposes. So of course, I was just about due. And again, now that I'm capable of experiencing "out there" I...
It's 11:07 a.m. and she's not there. Who is she? And why is she important? Well, the idea was that someone would come along with me, a person to assist out and about and around downtown Phoenix and vicinity. Could I have gotten away without the assistance? Probably. Maybe. But things would have...
I feel like one of the things I’ve been cultivating more and more, is learning to listen within. Initially it was partially by force (from bizarre after bizarre circumstances ) and then, more recently cultivating new ways, by choice. Using new tools. Learning to trust myself.
If there is...
Things are different since covid. I will add to this list as I remember. I do not though consider any of this to be long covid. Note on the last entry on hair loss there are some great comments there i still have not had the mental effort to respond to
Massive hair loss
white hairs for firdt...
“Could it be I was the one that you held so deep in the night
On the back staircase you fell to your knees with tears in your eyes
All that you suffered, all the disease
You couldn't hide it, hide it from me
All alone scared in your room, would you swear there's nobody home
On the bed laying...
Two of the most exciting things to have happened to me in 6 years of the land of bed… have occurred in past 2 weeks.
Would you like to know?
I’m sure you do.
Number one, my friend made me a gf df casserole I could eat for Easter!!!!!! I felt so amazing and included and it was SO yummy...
A little journey:
In 2019, i was connected to a woman locally whom my cousin told me was from her church and had lyme disease. Her name is Laney. She began messaging me in a crisis state with a one year old in spring on 2019 and i wished her well as soon as she became stabilized in hell. As...
So when I run my fingers through my hair I realized I was pulling out fistfuls I mean not tugging on them they just come out there everywhere by the handful by the fist full started a couple of days ago.
Looked it up Happens in 10% of Covid patients. It’s the general phenomenon where sudden...
A rotten streak of 18 consecutive days and nights has unceremoniously reached its end. Hooray for that. Now instead of debilitating awfulness, I am simply contending with a new roommate who snores louder than loud for periods no less than 12 hours at a time. But that's something I can contend...
Sunday morning vibes ✨🙏☀️
“Today in this song we will be chanting to the deity, Ganesha. This is an invocation to that which removes obstacles, helps us clear the path and release anything that is standing in our way, that we no longer feel we need to be holding.
And so as we invoke the...
Was six weeks yesterday “celebratibg” covid start
my connective tissues hurting everywhere, started ankles and wrists abd quickly became neck shoukders elbows hips , thighs and of coylyrse knees calves now too
too many possibilities to list. And im too tired to So i guess im tired too
worst...
I do not believe Lewis Carroll actually said this but I was always quite fond of Alice in wonderland for a great many years. I am sure I find comfort in parts of it since at times I can relate to her falling down a black hole.
I haven’t been left alone for an extensive amount of time recently…...
Hello dear friends!
I was missing for awhile due to strange and significant technology issues. But some things have been resolved on multiple fronts so that’s cause for celebration! I do hope you guys are all doing well this week of the spring equinox and taking good care of your body and minds...