Sunday, June 24, 2007

In Vacation Mode

We're enjoying our vacation so far. We were quite active for the first part of our trip, and I was surprised and delighted to get through it without any crashes! I have really pushed my physical stamina at times on this trip - hiking, canoeing - and I've handled it surprisingly well. I would love to think that my exercise intolerance is lessening, but it could also be that there's simply much less stress on vacation.

I've had two instances of feeling poorly. It was my 9-year old son's most fervent wish to visit Graceland when we were in Memphis (he loves Elvis!). Both of the boys and I felt bad by the end of our 3-hour visit. That museum-type pace is the worst for Orthostatic Intolerance. Visiting museums is something I really miss. I recovered quickly, though.

The second problem occurred during our very ambitious canoe camping excursion along the Buffalo River in the Ozarks region of Arkansas. My husband and I used to love canoe camping, and we've wanted to share that with our kids for a long time. I thought I could handle it OK since the river has a nice current that keeps you moving along, but I had forgotten how much work it takes to steer. By late afternoon (always my low time of day) on our first day, I just sort of lost it - got really frustrated, yelled at the kids, made everyone mad at me. I finally realized I was pushing myself too hard physically and was also hungry. Low blood sugar can turn me into a different person. We stopped to rest, cooled off in the river, and had a snack. I improved after that and handled the rest of the trip very well. In fact, I fully expected to crash the next day, after two days of paddling for 3 hours each day, but I didn't. I actually felt very good the next day! Amazing. After that first episode, I tried to take lots of breaks, eat lots of snacks, and stay cool with frequent swim breaks. I guess it worked. We all had a wonderful time.

I'm finding that I feel quite well as long as I can stick to my typical routine - get to bed before 10 pm, take a nap in the afternoon, and have frequent meals to keep the blood sugar steady.

We'll be heading back home soon, so I should be able to blog more regularly again - after we get unpacked!

Sunday, June 10, 2007

Busy, busy!

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!

Friday, June 01, 2007

Anti-Virals and Emotional Instability

After my blog last week about the sudden depression that caught me off guard, an acquaintance from the immune support message boards sent me an e-mail that made me feel a whole lot better. Here's part of what she said:

"Valtrex certainly can cause a die-off reaction! My doctor, who has treated more than 200 patients with antivirals, states that about 30% of his patients (admittedly a very sick group) get a significant die-off with Valtrex or Famvir.

I have been struggling with die-off symptoms on Famvir (a very similar drug to Valtrex) for seven months now. The ones I had at the beginning were every bit as bad as those experienced by many Valcyte patients. (This was especially surprising to me since my level of functioning prior to the drug was pretty least a notch or two above yours, based on what I've read in your blog.)

Note also that the biggest initial die-off reactions to antivirals tend to be in emotional lability. This was the case for me, I have noted it on the ProHealth board, and my doctor told me (after I'd already experienced it) that it was the case for many or most of his patients who got die-off as well.

My doctor told me when I was struggling with it that my suffering eventually would lead to improved mood in general. Those around me (my husband etc.) now state that my emotional state (in terms of positivity and resilience to stress) has indeed improved a lot since I started the drug, regardless of how I seem to be feeling physically or how well my cognitive abilities are doing. (A number of my other symptoms have improved now compared to where I started too, but only when I stop taking the drug for a day or two. The continued die-off from the drug seem to be covering up the improvements.)"

I found this extremely interesting. As I mentioned in a previous blog, I have sometimes felt lately that I was losing my mind - feeling fine one day and sobbing uncontrollably the next. It's so comforting to find out this is a normal reaction.

More on reactions to Valtrex in another blog. The system is about to shut down....