Jul 312011

1. Run like the dickens from stress and chaos
2. Learn you are not a robot who can do everything
3. Kick your feet up as often as possible

First, number one. This is the hardest one because stress and chaos are impossible to avoid, particularly in my life it seems. We just moved across country with a school-aged child. So what’s so stressful about that? But before that crotchety synapse kicks in, I think about how fortunate we are that we can work remotely, that our child is adaptable, and that we found a nice place to live. That kind of stuff.

Next on the list is setting some boundaries with folks who need some boundary setting in order to get well with ME/CFS, which is pretty much everyone. This is as simple and as difficult as needing to know when and how to say the four letter word known as “no”. In regards to trying to do it all:  Is it worth dying for? So it”s actually kind of comforting for all in a way to know that you’ll still be around for a while to tell them no.

Last is to get lots of rest. This of course means again listening to yourself most likely, not getting too manic about getting things done. Find a way that helps you go with the flow on a daily basis no matter where you’re at physically. Try somehow to find a rhythm, even if it’s a cup of non-caffeinated tea with your feet up for twenty minutes with the door closed (locked?). Go ahead, live on the edge! Whatever is needed. Just make sure you find a way to recharge that works for you. Daily.

 Posted by on July 31, 2011
Jul 152011

Illustration by Matt HertelI was so excited to start a new therapy for CFS, CFIDS, ME, whatever you want to call a redheaded stepchild neuroimmune disease with no name. But it won’t be, at least for now. I’ve been alerted that shipments of GcMAF to the US from BGLI in the Netherlands are temporarily suspended due to recent confiscations by the FDA. It’s not that the federal agency has anything in particular against GcMAF, it’s just that there is a general curtain falling on the importation of these kinds of biological products by the Department of Homland Security. Anybody who knows anything about macrophage activation (hint: what do you think MAF stands for?), knows this is a serious deficit for patients who have  been without medical recourse for decades. The reclusive Dr. Nabuto Yamamoto holds the patent for GcMAF, so well, there ya go.

My doctor won’t even do the necessary bloodwork to receive this form of GcMAF anymore. Meh. Who would if the meds will never bother to arrive from the Netherlands anyway? Word is you have to hand carry it in your suitcase yourself twice in six months, if you have the physical and financial means, or the where with all to deal with this, for goodness sake.
 Posted by on July 15, 2011