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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
There are various classes of immunoglobulins and you could have a deficiency in one. An immunologist can order these tests and do a full workup. I think there are other specialized tests as well. If you have CIDP or subclass deficiencies you will be eligible for IVIG which would in such a case...
Dr. John Lathrop has a phD from Harvard in astrophysics. He has been teaching me about the stars for as long as I can remember. He is my father.
In their early days of dating, my mom once introduced him as an ivy league astrologer, & he didn't correct her (she was merely nervous, not...
It was as if someone had transported the CFSAC committee to a different planet. Down from their small perch on at top of the building into the main lobby with the banks of lights shining down and three cameramen following their every move one wondered if this might be what the future looks...
From the outside, my life would seem very simple. I do not work, there is no place I must be more than a couple times a year, my income is steady, and my needs predictable. Yet in this simplicity there is a large void that comes from not feeling as though I have accomplished much in any given...
I am so incredibly grateful for my physician. She is an internist and not a CFS specialist, according to her thinking, anyway. But I have found that everything she has recommended and prescribed has turned out to be along the lines with CFS "experts". She is protectively cautious, yet always...
I love the wind. The wind is power. The wind is a vital energy force that moves through the body when it gusts against you. I have stood upon bluffs where the wind is whipped into a frenzy, so strong that one can briefly lean into it without fear of falling.
Now my experiences with the wind...
Hey Everyone! I really liked how this was written by Jody as it helps bring to light some of the invisibility many of us with CFS or severe MCS have faced. As our lives spin crazily out of control, more often than not those we know will turn away from us, societies support systems for life...
Ahhhh, the sanctitude of solitude.... Saying what's on your sleeve in a peaceful space. Although the words 'is it safe here' do pop up in my mind. Are we ever 'safe' online?
In other communities we thrive when we get more 'friends' and we are eager to share the littlest details with...
Was reading a post about Teitelbaum when it occurred to me that the discovery of XMRV with the subsequent expected flurry of research and treatments (keep your fingers crossed), may put a lot of people in the CFS business out of work.
I don't know about you, but I'm tired of expensive...
Two years ago, a little Winter Wren started frequenting our camp. We often see them in the bushes in the woods, flitting from one spot to the next without ever a having a care for the giant who stands watching them. They are so small, other than hummingbirds they are one of the smallest birds we...
I am reposting this from something I wrote on CFSKC. It is something for us all to think about. I'd like to clarify that I am talking about this in the sense of activism and avoiding attacking people. I am not suggesting that we be medically, artificially unconditionally grouped together...
Who Are Those Guys? Gazing at the distant cloud of dust raised by his dogged but mysterious pursuers Butch Cassidy turned to the Sundance Kid and with some awe muttered Who are those guys? Despite all their tricks that posse had stuck on their trail like glue.
Has the Whittemore Peterson...
For me, some days are good and robust, while other days are lack luster and wanting for more. Well, that isnt entirely accurate. Lately it feels more like some weeks are this way. A CFS crash can come in a variety of flavors. Sometimes it is less energy, sometimes more pain, but always an...
Living in the woods as we have been these last seven years sounds very daunting. Indeed, at times it makes me look back and wonder how we have managed to survive as well as we have. The first things that come to mind like this all involve winter and the times our usually mild climate here in the...
I have been taking a couple days to recuperate from the lengthy trip to see our doctor last Thursday. It was a very exciting day and also very exhausting because of all the excitement.
Timing in life really is very interesting to me. Here I am traveling most of Thursday, spending about an...
(Cross-posted at Behind the Surface)
Since my boyfriend, A., arrived a week and a half ago, I have awakened each morning to his succinct report of the most interesting news story of the day such as the latest creepy cop video on Reddit or the most recent Obama capitulation to the Republicans...
TALKING ABOUT IT.
The best way to talk about this subject is to share my own experiences. And theres only one language to use when talking about this subject. And that is in simple, basic, hard (or in my case, soft :D) terms. I was lucky enough to work for 2 doctors in one of my early Nanny...
Wednesday, October 7, 2009
The weather has turned cooler and overcast these days. Summer is over.
It seems every year that in the change of seasons from summer to fall, I experience some downturn. Some years have been worse than others. This fall so far has been, I think, the gentlest one...
I had a wonderful birthday yesterday. It was a very relaxing day. Here are the things that made yesterday one of the best birthdays I have ever had:
Perfectly blue skies and sunshine.
A quiet hour spent at my spirit rock, contemplating the remarkable changes taking place in me in recent...
Eight years ago today saw one of the worst days of my life. The last two months had become an ever increasing nightmare as life started to plunge into the icy depths of serious illness. With chronic fatigue making it increasingly difficult to work even part time and chemical sensitivities...