Wednesday, September 26, 2007


It's been a very long week. I've spent much of the past 9 days in bed, but I seem to finally be coming out of it. I'm still not sure how much of this has been a virus and how much has been a reaction to the Valtrex, but this was certainly no ordinary crash.

I've had heavy congestion in addition to my normal crash symptoms, so I suspect I caught one of the viruses that's been going around among my son's friends. In fact, my son is home sick today - congested and totally worn out - so he's probably got the same thing now.

You would think that being on a strong anti-viral would protect me against viruses, but I guess it doesn't work that way! From what I understand, anti-virals are very specific (as opposed to some of the broad spectrum antibiotics). Being on anti-virals can also make you more susceptible to bacterial infections. I started on Zithromax yesterday for what seems to be a sinus infection, after my congestion got worse again.

The worst part about this latest crash was a severe bout of depression this weekend. It was obvious to me that it was a biochemical shift - it happened so suddenly and for no apparent reason. In fact, I was feeling a bit better physically when it hit me. Suddenly I was turning trivial things into terrible tragedies, seeing problems where none existed, and sobbing uncontrollably. Others on Valtrex and Valcyte have described this same sort of sudden, severe mood swings. Knowing what's causing it doesn't make it much easier to deal with - for either me or my husband. We were both relieved when it passed.

I'm determined to recover by tomorrow so that I can attend an annual board meeting. It's a once a year thing that amounts to about 1/6 of my annual income, so I don't want to miss it! Fortunately, it's just a short train ride to New Jersey for me and a half-day meeting. I'm feeling much better today, so I think I'll be able to make it tomorrow. Now I just hope my son gets through this quicker than I did.

Wednesday, September 19, 2007


I've been badly crashed since Monday evening this week. Maybe it's because I was too active this weekend or stayed too long at a festival with my family Saturday night. Maybe it's a response to finally getting back to my full dose of Valtrex (insurance mess finally resolved). Maybe it's because my sons' best friend has a cold and his virus is affecting me.

It doesn't really matter why, I guess. The fact is that this is a full-out, can't-ignore-it crash. I knew Monday night when my throat hurt so horribly and I felt achy all over.

It took me several years to learn this lesson, but I know when my symptoms get this bad that I have to give up, give in, and surrender completely. I've spent the past two days almost entirely in bed, rather than trying to get a few things done, as I might with milder symptoms. I've learned the hard way that if I keep pushing when it's this bad, it will only last longer and get worse.

There's no way out of a severe crash except through it. Back to the couch...

Thursday, September 13, 2007

Kids and CFS: Update

It's been a long time since I've written here about my two boys and their CFS. We have two sons, ages 9 and 13, who've both had CFS for several years now (if you want to read more about their history, diagnoses, and treatment, click on the "kids and CFIDS" label at the end of this blog to see all of my blogs about them).

Overall, both boys are doing quite well now. We're enormously grateful to Dr. Bell, Dr. Rowe, and our own pediatrician for their help over the past few years. Both of our boys had dramatic improvements with Florinef treatment for their Orthostatic Intolerance (OI). If you have a child or teen with CFS, you must learn about OI (thought to affect over 90% of people with CFS); many kids respond very well to treatment, as our boys have done.

Jamie (our 13-year old) has just bounced back from a pretty severe 3-day crash. No big surprise - we let him go away for the weekend with his friend's family - three of his closest friends in the pool and the ocean for two full days. A crash was almost certain, but sometimes you just have to go ahead and let them have fun and suffer the consequences. I asked him last night, while he was still feeling terrible, if he would do it all again, knowing how bad he'd crash. He grinned widely and said, "Definitely. It was awesome!"

Jamie still seems to be suffering from the effects of his Lyme infection in April. The infection triggered a slight worsening of his CFS symptoms, mainly reduced stamina. Lyme is a known trigger for CFS, so this isn't surprising. Just to be on the safe side, his pediatrician and a specialist are examining and testing him to be sure there's nothing else going on. Overall, though, he's doing well, still able to be in school full-time, in band, and even playing soccer. What a change from two years ago, when he was bed-ridden almost 50% of the time!

Craig, our 9-year old, started Florinef in April, with the same dramatic improvement we saw with Jamie previously. Craig was home sick this Monday, after an exertion-filled weekend of soccer, swimming, and golf, but by Tuesday morning he was feeling better and back to school. That was his first crash day since April - amazing! Craig also had adenoid surgery this summer because he struggles with chronic sinus infections. This is his bad allergy season, and he's been congested the past few weeks, but so far, no sinus infections.

So, we're still dealing with occasional crashes and school absences, but compared to years past, life is good.