It sucks. I've had no energy to post, but with the help of the wonder drugs plaquinil and prednisone, I now have about an hour or two of energy a day, with which I am going to waste an hour blogging. I'll also cut-and-paste the same boring entries to Blue Cat Lair and my Facebook pages, so for the next month or so there really won't be really topical stuff posted anywhere, just ramblings.
It's forced my to reschedule my trip to Idaho until late September. This is one time I won't argue back to the Big Guy. It's in the low hundreds there now, and while I used to love that temperature range, right now, I'll admire it from afar.
I have come across something that is very intriguing and has made for some good listening and spirit warming. It's Saint John Coltrane Church in San Francisco. I highly recommend going there on Tuesday afternoons for the Uplift Radio Broadcast. If you can pick up locally, tune in from Noon to 4. If not, you can listen online: KPOO 89.5,
When I was living in Philadelphia I used to go to Jazz Vespers at Old Pine Street Presbyterian Church, which, I learned today have ended due to lack of funding. I'm hope the tradition will continue somewhere in the area; it's a joyous noise too precious to lose.
Sunday, July 13, 2008
Lupus
Subscribe to:
Post Comments (Atom)
2 comments:
I, too, have lupus. Was diagnosed in 1988 and am still vertical. It's no picnic, but it is treatable and it sounds like your rheumatologis is doing the usual treatment, which has worked for me. I still have energy depletion -- mosly due to fibromyalgia, diabetes and CHF. These all came up when lupus went into remission.
You might be interested in my book, which was recommended by the education committee of the LFA. It's "Diagnosis: Lupus: The Intimate Journal of a Lupus Patient" (available on Amazon.com) where I wrote daily for almost five years before and after diagnosis. I'm a writer, but this was by far the hardest book I have written, because it's so self-revealing. But with lupus, I found I had to vent my feelings or it got worse.
I hope you are a member of a local lupus support group. They are a great help, and you may be able to help others, too.
Best,
Marilyn Morris
Bless you, Pam. My Best Beloved has lupus. She was diagnosed eleven years ago now, and these days things are relatively stable; but the first few years were certainly trying.
Praying.
Post a Comment