Notice that it's not a Movie Monday? Sorry about that, but we had no time at all last week for movies.
Ken was away all week, so I was going to bed at 9 pm so that I could manage to get up at 6 am to get both kids off to school. On Friday evening, we watched a couple of our favorite TV shows that I taped while he was away (yes, I do actually mean tape literally - we still use a VCR!), and Saturday was another early night for me because I had to get up early on Sunday...and that is the big story of my weekend.
I spent all day Sunday attending a CFS Conference sponsored by the NJ CFS Association. I left my house at 7:45 am and got home at 11 pm!! I never could have done this on my own. I was accompanied by two wonderful friends who have kids with CFS who helped with the driving. I wasn't able to actually sleep because I was too wired, but I did lie down and rest in the car on the way there and back, so that helped immensely. Otherwise, I wouldn't have made it through the long day.
The conference was excellent, and I am bursting to tell you all about it, but I am just too exhausted today to get into the details - tomorrow, I promise. The speakers were excellent, including my own Infectious Disease doctor, Dr. Susan Levine, and the top XMRV researcher from WPI, Dr. Judy Mikovitz. It was especially powerful to hear the details on XMRV directly from Dr. Mikovitz. Despite that fact that her presentation was highly technical and much of it was over my head (my background is in chem, not bio!), it still clarified things far more for me than the past year of reading articles and trying to figure out what's going on. After hearing her talk yesterday, I am extremely excited about the XMRV research - it is definitely present in the blood of people with CFS in both the US and the UK, and they are also finding it in the blood of people related to those with CFS (the family part of her talk just blew me away). Sorry to provide such a teaser without the details, but this is about the extent of my energy for today.
It was a great day, and I promise to type up my notes tomorrow when I have more time and energy. Now, it's off to a quick lunch, hopefully a long nap, then pick Jamie up, take him to the dentist, then rush to Craig's soccer game...see why I can't waste energy writing much today?? More tomorrow...
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.
Oh, I'm hoping you got that nap!
ReplyDeleteSue - I have a quick question when you have a moment. Is the tilt-table the only way to test for OI?
ReplyDeleteI asked to be tested at the VA and they sat me on the side of the bed, took my blood pressure, made me stand, took it, and then had me lie down and took. They then pronounced me fine.
Even though I pass out at the Dentist office when I am brought up too quickly and other symptoms.
So I thought I would double check.
BTW, I remember having a test done on a table that was titled during the procedure and I kept passing out. The VA technicians kept getting upset with me because I kept passing out. I think they thought I was faking. After about the third time or so, they realized I was having a major problem!
I sense your excitement! And am looking forward to your update :-)
ReplyDeleteDominique -
ReplyDeleteWhat you're remembering was indeed a tilt table test, and it sounds like you failed! They're supposed to stop the test if you pass out (once, not three times!!) Sounds like they didn't really know what they were doing. Funny - someone at the NJ Conference this weekend told a similar story. She passed out even before she got on the table, just from standing too long, and the doctor wrote in her record, "Patient refused to continue test"!!
Anyway, there is another way to test for OI, but what they did at the VA is NOT it! Craig's school nurse tried the same thing with the same results (she was always trying to disprove he was ill). You have to first lie still for 10 minutes while they monitor blood pressure and pulse. Then, you stand up and have to stand perfectly still - no movement, no fidgeting at all - while they continue to take your blood pressure and pulse readings, preferably every minute. It takes most people about 10 minutes or so of this before the OI becomes apparent (less time if yours is more severe; perhaps a bit longer is your stamina is better). I have forms that Dr. Rowe (OI expert at Johns Hopkins) uses for this office test - I'll e-mail them to you.
Sue