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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
People always ask me to describe a flare. And since I'm in one today, I'm going to describe it.
Woke up like I had no sleep, so the fatigue is on. Fatigue so bad that I cannot walk across this apartment, can't do anything but sit or lay down. Fatigue in the limbs, trouble moving arms, they...
Mini rant of mine. Just something that drives me crazy. When someone, like one of my idiot relatives makes a comment to me when they have a very rare case of being mildly sick with something like a forty eight hour bug or a regular cold, just something where in a few days or week tops they are...
For the most part, at some point in this journey of illness, we have all seen a therapist. I have seen psychiatrists, psychologists, social workers. Been there. I have seen folks who have CFS or Fibro and are therapists.
Those who are ill need to talk about it. We need to vent, let it...
Treatment #9
"Depression is melancholy minus its charms." Susan Sontag
This past weekend was rough. After having 8 treatments of Ampligen over the past 4 weeks go so smoothly, I wasn't prepared for the surprise dark cloud that rolled over my horizon beginning Friday evening. Some would...
In all the 21 years of being ill, I have never really had a job. I became ill at 18. I was never able to finish college. I have a 2 year degree, but unlike many, that isn't good enough for this type A personality female that I am.
Six years ago, by accident, I started making jewelry and...
Everything crossed and thinking of you. Enjoy your bread and butter pudding. Is it with or with out Custard or Creme Anglais as the French call it or is it with cream or on it's own? Now there is a question to ponder.
Take care
Joy
:smiley-hug:
I think it's important to blog about this in so many ways. I was always a workaholic. I was a straight A student and had a 4.0 in college. Anything I ever had to do, I'd give it a hundred and ten percent. Not being able to work is horrible. I would love to find something I can do for money...
Its been a busy week since I stopped full time work on 12<SUP>th</SUP> Feb. Not just physically, but mentally as well. Perhaps the mental changes that are needed to improve health, for me, are just as important as the physical. My mind had been clouded with anger, resentment & exhaustion for...
The inability of the second UK XMRV study this time from a friendly research group headed by Dr. Groom to find any XMRV in a very large sample of patients was rough news for sure. The ME Action Group in the UK took a rather resigned tone in their response while Dr. Vernon highlighted a few...
So sick today and full of brain fog. The neighbors are doing me in. I finally went over to the office and filed a complaint. It's bad enough that they keep me awake, but when I try to make up for some of the sleep in the morning, they start in again. I told the office people, I just want to...
Treatment # 8
Today is my first month's anniversary with Ampligen, and my body celebrated by manifesting all the signs that it was working - feeling like I had the flu. I say that only half in jest, because my Doctor confirmed last night that, after seeing patients on this drug for the past...
This is a post from my blog from a few months back that I'm just getting around to posting here. :)
What I Miss Most
Note: This is a journal entry from a couple years ago. I was a bit hesitant to post it here, as it was written in what was a moment of grief for me. I pretty much bare my...
I dont seem to be the only one noticing a very early spring around here. My springtime nemesis, the red alder tree, has begun a very early pollination cycle.
Every spring, usually around late March to early April, each mature Alder tree begins to ripen their hundreds of pollinating...
As expected Dr. Vernon delivered a rather comprehensive overview of the latest XMRV study in the Retrovirology journal. Dr. Vernon spent some time making clear who just who did this study; it was basically the best of UK retroviral researchers (one 'world-renowned') plus top ME/CFS UK...
UK researchers are not winning the hearts and minds of CFS patients thats for sure. Just a couple of uplifting weeks after Dr. Mikovits displayed so much enthusiasm and confidence in XMRV the other shoe has dropped. An Imperial College researcher said another negative study was coming and here...
Treatment #7
I don't want to say that getting a needle stuck in your arm is getting routine, but a nice short summary of this morning's Ampligen infusion would simply be "speed." Because I have now tolerated the full dose twice last week, nurse Gwen ramped up the rate of my drip today and got...
Flaring badly tonight. And my loud neighbors and this disease do not mix. They finally turned their junk off. I live in an apartment and for the last month, my neighbors have decided to blast their tv through my bedroom wall. I asked them nicely to please stop doing it about a week and a...
I think what always surprises me the most is how I think I am well enough to do something, then I go to do it and I can't, or it's insanely hard. Anything from small things like hanging up a pile of clothing to larger things like cleaning off my car.
Today, I really thought I was well enough...
Detox.
Most people are familiar with the word, products on store shelves promising to detoxify you from last nights party or flush the junk food out of your system.
But what does it really mean?
The body has several pathways by which it will detoxify everything from that extra couple...
Treatment #6
I promised I would tell the good, the bad and the ugly of this journey so today's post will have two out of the three Let me get the bad out of the way first, because the most amazing thing happened to me after my last treatment I'm bursting to tell you about it.
First, let...