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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
I had a nice surprise yesterday. My friend <a href="http://ncubator.ca/blogger/">Jody Smith over at Ncubator</a> passed the Happiness Award on to me. Thanks for the award Jody, I shall see if I can spread some cheer in kind!
Without further ado - on with the show!
The rules for the...
A million and a half dollars, two hundred fifty patients and seven years later the UK government's best hope for locking in its twisted approach to ME/CFS permanently, fell to earth with a crash. UK ME/CFS patients, certainly arent out of the woods, but they can breathe a sigh of relief that...
From my blog at: http://dreamsatstake.blogspot.com
I went to an all-girl, Catholic high school with only 44 students in my graduating class. Among other essential courses in science, math and english, every student had to take a typing class as part of the required curriculum. This, at the...
We've all heard the question in one form or another.
It usually comes at a time when you look better than usual, or feel worse than usual. But either way, it makes you feel the same as usual.
"What exactly is wrong with you?" they ask, innocently...not knowing that their "casual" remark...
You really get to know yourself too well sometimes...
Dr. Frivold is the husband of Berit Frivold, who's recovery from ME/CFS using the Lightning Process, was posted a month or so ago. Dr. Frivold, is naturally very happy that his wife has recovered and, after reading the discussion on Berit's recovery, sent me these observations.
I recognize...
Went to the pharmacy to pick up my prescrips today. I was told my pain med has doubled in price to fifty six dollars a bottle and my insurance will not cover it. There is no patient assist for it because it's an odd med that hardly anyone gets anymore. Yeah, because it actually works on this...
Have I mentioned that I love my doctor?
I had an appointment with Dr. Buscher this morning, by phone because of the great difficulty in personally seeing him. It was time to check-in with him as to our last six months and go over what testing Jeremy and I should have before seeing him in...
As you may know, I have my very first infectious disease doctor visit on Wednesday and I am so looking forward to it. I am also hoping to be validated, tested and listened to. I may have some kinds of expectations and as of today won't take no for an answer!!!!
When I go to specialists...
Best recent Threads:
Advocacy
Dr Myhill's License in Jeopardy
XMRV-positive doctor begs us to fight for WPI
Panorama ME Investigation Petition
Experience
Jason 2010 Illness duration and coping style in chronic fatigue syndrome
Best recent Posts:
Best recent Posts by me:
Despair, Acceptance...
If I could tell the world just five facts about Myalgic Encephalomyelitis (ME/cfs) I might choose these. ME/CFS
causes more functional impairment than diabetes, heart failure or kidney disease.
creates a level of disability comparable to MS, chemotherapy or the final stages of AIDS...
What are we here for? Perhaps we are simply here for the opportunity to become so happy that we no longer care what we are here for! (wrote my Astrologer today..).
How many people are genuinely happy? I dont mean happy because they have material possessions or the perfect wife/husband/partner...
I never heard the phrase "allergic cascade" until 10 days ago, when I woke up with a nose so swollen with mucous that I literally could not blow it out. Seeing my distorted face in the bathroom mirror, all I could think of was that classic scene in the movie "Hitch" where Will Smith's head...
The last week has been a rough one around here for us. Jeremy started his anti-candida medicine and so has been feeling very foggy, tired, and easily run down from the die-off reaction. Today will be his first day at the full strength dose. The course of treatment lasts for three months but...
The first 'Official' Phoenix Fundraiser will provide essential information infrastructure elements to Dr. Bateman that will assist her in her studies on XMRV with Dr. Light/Singh, on XMRV with Glaxo-Smith Kline, on muscle and other receptors with Dr. Light, on Ampligen with Hemispherx and other...
Destiny is a very strange thing. Sometimes in your life, you come to a crossroad, and you can see that crossroad. And you get to make a choice. How much of that choice is free will and how much of it is destiny, I've never been sure. What I do know is, if I hadn't gotten sick, my life would...
This morning I was reading a forum post about heart symptoms & remembered someone else talking about abnormal kidney function & realized that these were some of many problems I have had in the past & are now resolved or are not symptomatic at the present time.<?xml:namespace prefix = o ns =...
Ok so I just got my test results and a teleconference with Dr Klimas.
Sleep study: I have very short rem sleep and low quality sleep. She wants me to take a sleep medication, I forgot the name. Liquid something. (IT IS DOXEPIN, 10 mg, anyone experience with that? ). This is to improve deep...
Well, it was a rough week. Rough. I got my period last Monday. Don't you men just love knowing my monthly issues and schedule? NOT! Sorry, it comes with the gender. Anyway, I had a migraine the day before and my friend was here from NYC and I basically stayed in bed all last weekend while...