Thursday, January 25, 2007

Working for a Living

I did it! I survived my first half-day back in consulting work. I'm still floating on a cloud of elation, relieved that I was able to manage this and thrilled that I am contributing to our family income. I've had so many conflicted feelings about work and CFIDS over the past few years that this feels like a big step forward emotionally, a huge achievement.

Years ago, BEFORE, I worked as an environmental management consultant, helping companies to learn how to decrease their environmental impacts. It was rewarding work, though very intensive and requiring constant travel. I enjoyed a bit of minor celebrity, becoming fairly well-known in my field, giving talks at conferences, and even publishing a book. After Jamie was born, I moved into management to try to reduce my travel, but I was still had a hectic schedule. By the time Craig was born in 1998, Ken and I were both pretty burnt out, feeling like our lives were flying by in blur. In 2000, I left my career behind to try to slow down the pace of our lives and enjoy my family more. We figured we had enough savings to last us a year or two, and I could try to earn money through freelance writing. I was thrilled with this change, feeling very content with our more relaxed life, and excited about my new writing career. Ken and I always said that anytime we needed more money, I could do some consulting.

Then, on March 2, 2002, I thought I'd come down with a nasty flu...and you know the rest of that story, right? In the past few years, I've had offers for consulting jobs, but I didn't have the stamina to do the work. Each time an opportunity came up, I was wracked with conflicting feelings. I desperately wanted to contribute to our income and relieve some of the financial pressure I knew Ken was feeling, but I was scared that I'd commit to a job I couldn't do or push past my meager limits with long-lasting consequences.

Several times in the past two years, I came close to accepting a job. The first opportunity seemed doable since the company mainly wanted me to do the sort of work I could do at my own pace, at home. After much deliberation, I signed a contract with them, and then they told me the first thing they wanted me to do was a three-day audit at a site several hours away. Auditing is very physically and mentally exhausting work, and this job would also require travel. I knew I couldn't do it, so I was forced to tell them about my illness. I tried to downplay it and suggested ways they could accomodate me - working in half days, taking a 2-hour break mid-day, etc. Guess what? I never heard from them again.

Another opportunity came up six months ago when an old colleague called to ask if I could help with one of her clients. She's a good friend and knows all about my CFIDS, but the physical challenges still seemed daunting to me. I spent weeks worrying and obsessing over it. I could see that Ken desperately wanted me to do it, I knew our finances were getting tighter and tighter, but it still seemed like an insurmountable physical challenge. I ended up saying no and felt that, for the first time, I was admitting that I might never be able to do that kind of work again (or earn that kind of money). I sort of said good-bye to that part of myself. I also came very close to actually throwing away all my old files and binders.

Then, last month I got an unexpected call from someone whom I'd previously turrned down work. He knew about my illness but had a small, local job perfect for my background and wondered if I was well enough to do it. I'd had a great two months, he had no problem with my working in half-day increments, and the client is only 14 miles from my house. So, here I am! I spent every ounce of energy the past two weeks preparing and relearning all the stuff I used to teach other people. I even had to reread my own book. I was scared to death that I'd wake up this morning unable to get out of bed, so I've spent much of the past week lying on the couch, saving up my energy. But I did all the prep work, made it through my half-day on-site today, and can now send an invoice for a very nice sum. Hooray!

It's probably just adrenaline or endorphins or something, but I really felt well today and didn't have any symptoms at all while I was at the plant. I realize there'll be payback, and I expect to crash tomorrow, but for now I feel good. I think we'll break out the sparkling fruit juice tonight and celebrate.

Monday, January 22, 2007

More Information on New Treatment

Wow...since I posted my last blog about starting Valcyte, I've received a lot of e-mails expressing support, concern, and requests for more information. Thank you all for your notes. I'm reminded once again of how grateful I am for this virtual community of people with CFIDS. I don't know anyone in my local area with CFIDS (though I know there must be plenty of them out there...), and it means so much to be able to "talk" things over with others who fully understand.

I had a few instances of cold feet this weekend (figuratively and literally, with my usual weird temperature fluctuations!). Bottom line is that I have embarked on a course of treatment with a lot of uncertainties, and it's a little scary.

My doctor commented that most clinical experience with Valcyte has been with AIDS patients and organ transplant patients, both of whom have seriously deficient immune systems. The risks and side effects known for those patients might be completely different for me. Yes, I'm ill, but with a mostly overactive immune system and otherwise healthy organs. Who knows how I'll react? Ultimately, I made my decision based on my doctor's support...which was based in large part on her experience with me in the past. She doesn't really know what will happen either.

I don't want to persuade others to try this treatment based only on my experience because there could be significant risks involved.

Here are some of the sources that my doctor and I reviewed:

Virus-Induced CN Dysfunction Website
(a different way of looking at some cases of CFIDS; Dr. Bell told me years ago that he preferred to call the type of CFIDS that Jamie and I have Post-Viral Dysautonomia - same sort of thinking)
I was particularly interested in the page on this website about Testing. In my case, all of the labs used by my insurance company use a fairly useless internal index to report HHV-6 antibodies, so we decided to forgo the test. This page also lists the lab that Dr. Montoya uses for the Valcyte trials at Standford, as well as the link for the upcoming trial (which I would have tried to join if I lived in San Francisco).

HHV-6 Foundation Website
More good information on current research on HHV-6 in CFIDS, including links to Dr. Montoya's research abstract and a full text summary of recent presentations on the topic.

PDR Listing for Valcyte

Here's the listing for Valcyte from the Physician's Desk Reference. This is where it gets scary, but many drugs have long lists of side effects and warnings. My own doctor's intrepretation was important to me at this point.

Well, I hope that helps others to learn more of the facts.

As for me...well, so far I have no idea if it's working or not. I felt pretty good on Saturday and moderately crashed on Sunday. That could easily be more of the same pattern I've been stuck in since January 1 or it could be the start of my worsening due to the drug which would mean that it's working. Impossible to tell yet. I'll keep you posted!

Saturday, January 20, 2007

Jumping in With Both Feet

A week ago, I wrote about the exciting new study from Stanford about the 21 people with abrupt onset CFIDS who recovered with the anti-viral drug Valcyte. Since then, articles about the groundbreaking study have been popping up all over (Red Orbit, Boston Globe).

Patience has never been one of my strong points, so yesterday I started Valcyte myself to see if it will help me.

I have still been stuck in this terrible crash that began January 1, still spending days in bed with only brief periods of feeling good. I went to see my doctor yesterday. She has prescribed anti-virals (usually Famvir) for me in the past when I've gotten stuck in a particularly bad crash , and it often helped. I was like a limp rag at the doctor's office, barely able to walk.

As always, my doctor listened to me carefully (and I'm sure could see how bad I was for herself) and considered how to help me. It's a joke between us that I always have some new piece of CFIDS research in hand when I go to see her, and this time I had the new Valcyte study. She'd seen the news herself but now studied it more carefully and said she thought we could try it.

The downside? For starters, the first month's supply cost $300 (that's WITH insurance coverage; without it's $1200). Ken and I figure if it works, I'll be able to earn the money to pay for it (not to mention the money we spend on medicines and supplements now).

In addition, the study summaries I've read said that all of the patients got worse before they got better. This is a big concern for me short term, since next week I start this new consulting job that I'm already scared I won't be able to do. On the other hand, if I continue in this crash as I have for the past three weeks, I wouldn't be able to do anything next week anyway. It's a gamble either way.

I'm scared and excited and trying desperately not to get my hopes up too high. My mind keeps drifting to "what if" scenarios. What if I could work again? What if I didn't have to take a nap every day? What if it might work for my two sons?? The results in the study are so stunning, the stories of the recovered CFIDS patients so enticing.

So, I jumped in and started it. It might work, it might not. I'm trying not to think ahead, just to take each day as it comes, as I have for the past five years.

Monday, January 15, 2007

Coming Back to Life...Slowly

The last few days have passed in a blur of pain and exhaustion. This weekend was Craig's 9th birthday. My family drove down to stay with us, and we had a big party planned for Craig's friends on Saturday. Ten people living in our house for three days, and twelve boys ages 8- 12 running around Saturday afternoon. It's not too hard to predict what would happen to me, is it?

I expected to crash a bit after the party, but the reality was so much worse. I've been severely crashed more than half the time since New Year's Day (no idea why). I felt good briefly on Friday morning, ran around to do the errands I'd had to put off all week, and quickly crashed again. I woke up Saturday morning with my throat burning and my legs aching. I don't know how I made it through the party, but afterwards, I crawled into bed and stayed there the rest of the weekend, despite our house full of guests.

It wasn't all bad, though. While lying on my back all last week, I planned a rather elaborate Amazing Race party for Craig and his friends. With the help of my family and my wonderful friend Amy, the party was a huge success. Craig and his friends raced all over our house for two hours, making forts, hunting items in a scavenger hunt, solving secret codes, and taking on all sorts of challenges. The kids had a blast. Most importantly, Craig loved it and had a great time with his friends.

Even better, our birthday surprise for Craig was a huge hit. We got him a pet hamster, and he is beyond thrilled. He's a very loving, affectionate kid, and he's wanted a furry pet for a long time. He must have thanked us (for the hamster and the party) hundreds of times this weekend. Both of our boys seem to be in good shape this morning, so that's more good news - no crashes for them after the wild weekend.

As for me, I don't know what's going on. I've spent eight of the last fourteen days in bed. My boys would say I jinxed myself last month when I said I was feeling better than I had in four years (I was!). There's no doubt in my mind that there's some sort of virus behind this, whether as a trigger for a bizarre immune system response or directly affecting me. I feel a great deal of empathy for those with CFIDS who feel this bad all the time. I know I'm fortunate to be able to function as well as I do most of the time, even though it's about 40 - 50% of what I could do before I got sick.

I'm trying to break this cycle by taking things real slow now that I'm feeling decent again today. Maybe a few days of continued rest will finally allow my body to get back to where I was before.

Thursday, January 11, 2007

New Hope?

Our whole family got excited last night about a new study that shows promise for those of us with CFIDS. The basic story is that researchers at Stanford treated two dozen people with CFIDS with an anti-viral drug typically used to treat diseases caused by the herpes virus. The bottom line? Twenty-one of the twenty-five patients experienced significant improvement that has lasted for years after finishing the treatment! All patients whose CFIDS started suddenly with a flu-like illness recovered. The best news of all? A follow-up study (double-blind, placebo controlled) is starting this quarter, fully funded by the pharmaceutical company that makes the drug. Take a look at the details at the link - the stories of the recovered CFIDS patients are so exciting!

My boys screamed and cheered last night when they heard me telling my husband, Ken, about this study. We're all pretty fed up with this stupid disease this week. Craig and I have both been crashed for most of the past week. I've had several days where I was so sick that I spent most of the day in bed. This is unusual for me these days. It's such a disheartening feeling to see the days slip past this way.

Poor Craig has missed four days of school. He went back in this morning, but I expect a call from the school nurse at some point to come pick him up. He was still not back to normal this morning but was determined to go to school. He's had a headache for four days now, so I'm afraid he may be developing a sinus infection.

Craig's 9th birthday is Saturday, and we have plans to have a dozen boys to the house for an Amazing Race party. I'm so worried he'll still be sick. Even worse, the weather forecast is predicting rain all weekend. I was really counting on having this party outdoors! Plus, we have six of our extended family coming to stay with us for the occasion. Wish us luck...

Thursday, January 04, 2007

Happy New Year!

I keep meaning to catch up on my blog, tell all about our holidays, post photos, etc. I've finally given up and decided to start's a new year after all, right?

We did enjoy the holiday season, even though it was busy. We made a concerted effort to keep things quieter this year and not overdo, and it worked pretty well. We drove to Connecticut the weekend before Christmas to my Mom's house and met my sister and her family there. We enjoyed our time together and returned home for a much-needed quiet, relaxed Christmas Eve and Christmas Day on our own. I didn't feel great on Christmas, so it was so wonderful to take two naps and just take it easy, with no outside obligations. My Dad came to visit for a few days, then we enjoyed a similarly quiet New Year's weekend.

I crashed badly on New Year's Day, for no apparent reason (that usually means there's a virus behind the scenes throwing my immune system into overdrive). I'm slowly recovering. Same old story - felt a little better, did too much, crashed again.

I'm reading Dorothy Wall's incredible book, Encounters with the Invisible, about her struggles with CFIDS. It's an amazing, powerful book. I'll write more about it when I finish it. In the meantime, feel free to take a look at my favorite reads from 2006 at my book blog. I'd love to hear about what others are reading, too!

Quietly, gradually welcoming the new year...