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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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User Blogs
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...
Perhaps everyone's scent addiction has gotten out of hand when I walk outside and see not a soul, but can smell their laundry detergent from when they walked to their cars minutes (hours?) before.
Or that I can distinguish my apartment neighbors' different laundry scents from sitting out in the...
Hi everyone!
Intro:
Since being tested positive for Borrelia 1 year ago I have been lingering around what outsiders would call the "chronic lyme theory".
I have seen multiple people getting better from lengthy antibiotic treatments, and while of course that brings risks - I think being so...
Vent and purge post*****
Trigger warnings
Don’t read further if you don’t want to hear unpleasant things rn.
I’m trying so hard stabilize. To remain positive. But in truth, many nasty things are occurring in my body. I’ve lost track of updates. I took a 4th ambulance in. I’m on home...
Hi friends, long time no see!
Preparation Appointment at the HELP-apheresis clinic:
I must say my first appointment at the clinic where I will get the HELP-apheresis next week was nice.
He was incredibly careful not to forget anything to explain about this procedure, explaing possible side...
I don't really have anyone I think I can talk to about this in real life, but I can't keep it all inside me either. My partner has ended things, they don't love me anymore, and as soon as they're well enough for someone else to look after them, they want me to leave. I think I want to leave too...
Days Past , Days Pass
Most of the body of this blog effort happened on Thursday. Today is Saturday. Tomorrow is Sunday. Basically, that's how the days of the week work. In the United States of America, many people don't know this. Unfortunately there's a pronounced element of brainwashed...
Well…. My body is STRONGLY feeling the pull of this eclipse. No surprise. I first went down around 2017 eclipse and knew the 2024 one would affect me as well. These things are like full moons on steroids for some of us. 🙈😵💫
Anywaayysss with the eclipse on my mind and distracting from immense...
“There will be a time, when the dark finds out that it has been serving the light.” ~ Similarion J.R.R. Tolkien
Many in the me/cfs community are more tuned in than not I have found. Partially by necessity at times from this wretched illness forcing us into cocoons that break (and...
When physical activity was an essential creative outlet, what to do when it's no longer available?
I was the slowest on sports teams as a kid (background fatigue issues from early childhood). But I always loved to swim. In my early 20s I got really into yoga, did it everyday for many years...
Hi everyone,
Starting a new blog entry on it because … well I just am. I feel like posting a song. I’ve mostly not been able to listen to music past month. But, a song will do right now.
Things have continued to be rocky with me. My family left town for 5? Days and I was on my own. After all...