I haven't had much time for blogging in the flurry of activity lately. I had two major consulting assignments to finish. Fortunately, it was work I could do from home, on my laptop, but it was still time-consuming, especially when done in little hour or two-hour increments.
My boys both finished school last week, with all of the last-minute activities associated with that (two picnics, two awards ceremonies, etc.) That's all behind us now for the next two months, along with homework, tests, and school functions - hurray!
Jamie and I both crashed last week. We both had nausea and knee pain, in addition to our usual symptoms, so we were probably exposed to a virus of some sort. he managed OK, but I was in really bad shape on Friday, so we had to cancel our annual start-of-summer excursion to a local creek with our best friends. Rough day, but I'm doing better now.
Now, we have a whole new flurry of activity going on! We're getting ready for our annual summer road trip to Oklahoma to visit family. We're all looking forward to it, but there's a lot to do to get ready. I probably won't have much time for writing for awhile, though I am taking my laptop along this time.
Hope everyone out there is feeling well enough to enjoy the start of summer!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Hi, I actually came across your blog doing a google search for Valcyte. I am someone who has ho levels EBV/HHV6 and was just Dx with CFIDs last year after being ill most of my life(too long a story.) I have joined other online communities and altho they offer some emotional support, they seem to be a place where ppl mainly post about their symptoms and vent. I'm not getting any real helpful or encouraging info there. When I post about treatments or have questions, I get no response. Nobody is doing anything anti viral, just loading up on pain meds and psychotropics. I feel there must be a better way.
ReplyDeleteI found a clinic that specialized in treating CFIDs up in Wa(Fibro and fatigue Center) but have currently relocated back to NorCalif. I was going to start on the anti viral Valcyte but now am encountering lots of red tape by using an out of state doctor. She is currently working on getting her Ca license. I have used amantadine with some success but Valcyte seems like the "big guns" and is being presented almost as a cure.
So, this is my longwinded way of saying thanks for this blog and I hope you don't mind if I bookmark it and check in and comment. I am not a member of bloggercom. I already have 4 blogs LOL, not sure I want another but if there is a good active community here for CFIDs I may consider jumping ship. I am currently at DailyStrength and LJ for CFIDs and have other websites for art/entertainment that I post to as well.Yeah, thi sillness leaves you lots of time for the internet. :-)
Best wishes to you and your family.
~wannabewell~
Thanks for taking the time to comment. I'm glad you found my blog! If you read through past entries, you know that I tried 2 months of Valcyte and am currently in the middle of 6 months on Valtrex. I do think it's starting to help, though I understand it's a long-term therapy, not a quick fix.
ReplyDeleteIt would be great if you checked back periodically. I intend to keep discussing daily coping (and just plain living!) of life with CFIDS in a positive way, as well as discusing my progress on anti-viral therapy. You might also want to try the message boards at immunesupport.com - there is a very active community of people on Valcyte and other anti-virals there.
Good luck!
Sue