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Welcome to Phoenix Rising!
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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Well, so much for that neurologist.Honestly I don't think you missed anything that could have been of any help. I've been to 7 different neurologists over the years and none of... -
The bulldozerIf you can think of a way to improve your partner’s sleep quality, whether via supplements or medication, I think that’s a good start. I assume...
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The bulldozerThat's tough. I suppose we all have our own reasons to keep going. One thing that keeps me going is that you never know when there might be a...
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Say what? Book title misspelled on cover?And ... as of last Wednesday, July 17, 2024, day before this blog entry was posted, book with misspelling on spine needs revision on pages 60, 61... -
Yay! Made it to writers group today! & down to river too.Thanks! 🙂 That would be today prior to 1pm, am home now. Story's week is a complete fiction other than the neighbor's bird JayJay the cockatiel...
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What if none of it was ever really that far out there. It was merely a matter of pattern recognition? And once you see the patterns, you cannot unsee them.
I am sure some wonder, who does she think she is to be so vocal on some matters. She doesn’t have academia training etc in this area and...
Sooooo, I thought I would do a brainstorm sesh here. To assist me in navigating some important upcoming shifts in my life.
Note: please keep things in the more upbeat section for me as I have much to traverse and not a lot of bandwidth for worst case scenarios. Thank you 💗
To begin, yesterday...
ME/CFS started in 1998 with primary Epstein-Barr Virus infection (infectious mononucleosis) in high school. Acute symptoms for ~6 months.
Improved slightly over the years, but peaked about 60-ish on David Bell's scale. Went on high-dose Olive Leaf Extract and immune stimulants in 2009-2010 but...
Some of us have been through so much that it can be quite difficult to process the whole of it.
It comes in pieces for me.
Especially during my newest and latest eruptions aka crises.
And, I decided I forgive them.
I’ve known this.
But I get lost in the emotions when retriggered by...
our beloved cat Linus "Bert" died today, has been put to rest.
may he rest in peace in the eternal pastures of heaven.
If you are familiar with titanium walls of the system as a whole, then you understand.
“The thing that gives me hope is that one day this titanium wall of a system, I will be able to break through it and get access to the resources I need.” - Roger
You guys have been
through enough sad stuff lately.
Me too.
A song for your troubles.
** so many videos won’t upload here for me anymore. Strange. It’s called ‘skin shape-soul groove 7 inch vinyl’ on YouTube.
second song since the first won’t show, ha!
Golly gee, that neither.
Led...
I am so angry.
I am so angry.
I am so angry.
And I need a space to let this out right now.
I am so f ing tired of my situation.
I’ve literally been through beyond hell past 3 months. No, not much has changed. I’m still mostly in depends now since covid. Total survival mode. I my good...
Gimme a Lift
My hulking son carried me up the stairs at 2:06 p.m. this past Sunday afternoon. Yes, fortunately he's muscle bound, or we never would have made the ascent. Due to the constricted space, the initial wheelchair effort massively failed (rolling me up the stairs). And well before...
Well it's been quite a few years since my last entry! I had my amalgams removed safely, and followed Andy Cutler's chelation therapy to get the heavy metals out, and I got a lot better! I went from being bed bound to weight lifting, working, walking the dog an hour a day, being a mum again...
If I disclose this symptomatic information to my doctor, I suspect she'll try to medicate me, as well as having me psychoanalyzed. Heck, I'm not even sure they psychoanalyze anymore. There's probably some newfangled term defining intrusive mine probing these days - a glorious task that doesn't...
So much pain has come to me and my family from Lyme disease. And the mysterious ness around it of no one wanting to treat me. And as the years went on… I learned why.
Sharing an interview with the amazing and brave, Kris Newby.
Hi dear reader.
I have been Viewing my Situation very critically in the Last few days and realized I feel lost and overwhelmed. I am at a Crossroad. Go for 12 weeks intense abx Treatment of minocycline and rifampin to tackle bartonella suspection (its never confirmable because of shitty...
Background
The following statistical summarization includes all initial conversational interactions that have taken place since I've been wheelchair bound (nearly two years)
Note: I utilize a power wheelchair to get around. Most of my initial getting around took place within a nursing home...
Sometimes nothing is more healing than love.
If you cannot listen to this song, I will post the lyrics and you can lay in bed and imagine your hand on your heart unless you are strong. Enough to put it on your chest and imagine people in the world swaying to this song together.
Through the...
“Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.”
This verse has been in my head lots past few months. I have no idea what my new baseline is. I can confirm it may be worse than any baseline I’ve yet...
This is what my partner would say in the earliest days of their "crash" last December. We were both waiting for the alarm bells to be sounded, and a doctor to come racing in to the rescue after hearing how severe their condition was, ready to help. But nobody was coming.
I've been really...
Hi fellow ME people,
this entry has a quick summary wich is intended to be reader friendly for severe ME patients.
I think we all should do this more often to include our severe fellows, if possible.
3 Days ago I underwent the HELP-apheresis in germany. The procedure was quite a ride giving me...
I didn't want to call the fire department. No one does. Unless they have to. You see, I sort of got myself into a situation. Not immediately life-threatening, yet not exactly life-affirming either. At least there was plenty of time for solutions; dozens of minutes, a couple of hours, but perhaps...