Wednesday, August 29, 2012

Exciting News from Phoenix Rising Newsletter: New Meds, Treatments, & Mast Cell Theory

This afternoon I opened the latest e-newsletter from Phoenix Rising, and I have to admit, I may have gotten a little's been far too long since I read a page as chock-full of hope and good news as this newsletter was! From a couple of stories I'd already read, regarding Obama keeping his promise to ask that CFS/ME research be made higher priority & a new CFS Treatment Primer, to new medications for helping w/cytokine responses, the news that Ampligen may be FDA approved by the new year, and a fascinating Mast Cell theory that may help explain part of the process that causes just about every symptom I & my fellow CFS/ME & FM sufferers have, from IBS, to POTS, to such random things as itchy skin, and even Interstitial Cystitis! (A fascinating part of this article has to do with "Exercise Anaphylaxis", which a friend of mine w/FM & IC recently described her experience with perfectly, though I had no idea what it was when she explained it to me.)

Anyways, do check out Phoneix Rising; if you haven't signed up for their newsletter yet, I highly recommend it. I'm including a link to the Mast Cell article I'm so excited about. It just makes so much sense and explains why I'm constantly fighting this seeming cascade of symptoms...and why stomach & bladder pain can seem to be connected. Has a good section on POTS, too, explaining that perhaps Beta blockers are not the best thing, and there's also information about meds to treat the mast cell problem & natural alternatives. It may just be part of the puzzle, not the cause or the cure, but it looks like we're actually getting somewhere, if we can find one or two meds to keep all that in check? The possibilities of how much that could improve our quality of life are very exciting! Happy reading!

Thursday, August 9, 2012

Social Security Agency to Investigate if California is Illegally Denying SSDI/SSI Claims

Why does this not surprise me?

A Useful Illustration for POTS

One of my Facebook friends posted this on their feed, from Chronic Perserverance's Facebook Profile, and it's so great I have to share:

The temperature part is nice to so in print, so I don't feel like such a wuss for hiding out indoors being grateful for my A/C all day! Sometimes I still forget and get on my case for being a wuss, so it's nice to be reminded I do/don't do things for my own well-being, not because I'm a wuss. lol. Yup, I've had some freaky temperature-related incidents! So many things to worry about not being in my control if/when I'm forced to travel, but no point in dwelling on them...

Interesting Article on Candida & Endometriosis

I was pleased to see this article on Candida, Gut Dysbiosis, & it's relationship with Endometriosis, because in my experience, there is definitely something to it. My Endo & IC are definitely tied to my stomach somehow...if one is acting up, you can bet the other will be too. If I eat junky foods, and my stomach ends up all swollen & distended (which it will, exaggeratedly so!) you can bet my IC pain will act up if I don't hurry up & manage the fallout. Similarly, when my IC or Endo are  acting up,  my stomach gets super-sensitive. I know this article is kind of structured as to advertise the Body Ecology Diet, but if things are really out of control, the diet is not a bad place to start! I still use what I learned from doing it for a year or so to help me keep my stomach issues from getting completely unmanageable, and to help keep pain from the other two conditions at bay, so I don't really have any qualms about posting it.

Candida & Endometriosis