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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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Blog entries by mirespada
This past week, I have had a flair of symptoms. This flair has been worse than my previous ones and I can barely get out of bed. All I want is SLEEP! I have become "the person in the room" to my family...hopefully temporarily. So, since it has become all I can think about currently, I want to...
After I got my diagnosis, even with the crazy class they put me in at the Mayo Clinic (see earlier blog entry: My Experience in the Jacksonville Mayo Clinic's CFS program), I felt both elated and empowered. Before, if I researched my symptoms to find an explanation, the medical community would...
I would have to argue that although ME/CFS is a really hard disease to have because of the general misunderstandings and abuse we put up with from those around us, being completely undiagnosed but suffering from mysterious symptoms is actually harder. I spent six and a half years in that state...
Seeing is Believing!
An idiom that everyone has heard at some point in their life.
I bet, as a person with an invisible illness, reading that line made you a little frustrated and angry for a second! Those words cause an instant negative response within me, just reading it!
Although people...
I am having a hard day today, both with this illness and with being a mother.
Last week, I flew to San Francisco, CA from Portland, OR to do my yearly consultation with Stanford's ME/CFS program (I promise to do a later post about my experiences with the program because they are amazing!) . My...
As I have mentioned in my introductory post, I was undiagnosed for 6 and a half years. During those years, I was completely abused by the medical system and disillusioned about how much medicine and patient care has advanced. I have stories (oh, do I have stories!) about that time and my heart...