This blog has taken a back seat to many things over the last few years, but recent events have made me consider taking up writing again.   Those in-between years have been a roller coaster, going on and off medical leave, trying to maintain my position at the university while continuing to make enough progress in my health to actually be able to work.   Finally, a few puzzle pieces are starting to fit together.

First, last fall, I had a 2 day exercise/stress test done at the Workwell Foundation in California, which is one of only two places in the world that does this for ME/CFS patients.   I paid for it on my own, researched it on my own, then got one of my ME/CFS specialists to sign off on it.   I truthfully wasn't expecting much, other than an estimate of my anaerobic threshold, which would hopefully allow me to use a heart rate monitor to pace myself, and to gradually incorporate small amounts of exercise back into my life.   But the results got sent to my primary care doctor who got very excited, and said that the test may indicate mitochondrial dysfunction.   Two specialists later, and it turns out he was right.....there does indeed appear to be mitochondrial dysfunction, secondary to the viral infections which led to ME/CFS in the first place.  

Second, this summer, despite spending 90% of my time in bed during July, I determined I would make my annual pilgrimage to Mount Shasta, California.   I have been involved in a production, the "I AM" Come Pageant, on the life of Jesus there in an outdoor amphitheater since the age of 3.   To better survive the plane trip, I used a high dose of CoQ10, plenty of electrolytes in my water, and compression stockings.   Amazingly, I found I made the trip in fairly good shape (for a person who was practically bed bound right up to making the trip!), and continued to improve during my stay in Northern California.   This was to the point that family and close friends noticed the difference, unlike the usual invisibility of changes in chronic illness.   I then succeeded in driving back cross country to Boston.   Yes, I was desperately tired by the end of the trip, but I still made it!   It was only upon crossing the border into Ohio that I noticed subtle signs of a relapse.   That relapse continued the longer I stayed in Boston, despite the good effects of CoQ10 and Mestinon -- a drug designed for myasthenia gravis patients, but one which has been used to combat the effects of POTS, postural orthostatic tachycardia syndrome, something which frequently accompanies ME/CFS.  

So, now I am back on the road again.   The journey will be slower than any of my previous cross-country trips, as I attempt to discover if there are indeed places where I feel better, where the allergen load is low enough, the scenery beautiful enough, the air clear enough, the peace perceptible enough, that I can begin to make progress.   Despite my natural tendency to rush thru everything, my hope is to spend time writing and taking photos along the way, so as to be able to share my journey towards better health with you all, and hopefully in so doing, assist others in untangling their own ME/CFS puzzle.