Progress?

I know from all of your e-mails and comments that many people are waiting to hear how I'm doing on my new Valtrex treatment. I've been almost afraid to discuss it for fear of setting myself up to be disappointed (or jinxing myself, as my kids would say!)

I had about a month of feeling pretty crummy, but I hesitate to attribute that to Valtrex. It's not known to cause a "herx" reaction (i.e. an initial worsening due to virus die-off), plus I've had a very stressful month. I've had way too much going on with work, home, and family. My husband and I had a minor crisis which caused a significant amount of stress one week. We've also had trips to visit family and family staying with us - both enjoyable but tiring.

Than came last week, my fifth week on Valtrex. I felt really, really good all week long. In fact, I've now had about 8 days straight of feeling good, and I'm cautiously beginning to wonder if maybe this is a positive response to the anti-viral treatment.

The problem is, of course, that CFIDS is defined by unpredictable ups and downs, so it's always difficult to assess the efficacy of a new treatment. Also, I know that stress affects me quite severely, and last week was the first week in a long time when I didn't feel stressed. So, is it cause or effect? Am I feeling good simply because I'm less stressed or am I less stressed because I'm feeling better? See why I've been avoiding this train of thought??

Whatever the reason is, there's no denying how wonderful this past week has been. It's not only an improvement in my physical symptoms. This past week, I have experienced a clarity of thought and an enthusiasm that has been missing for a long time. It's subtle - something I didn't even realize was missing - feeling sharp and engaged. I'm having trouble putting it into words, but I just feel more like me, like the old me, the real me. It makes me wonder how much of the "emotional" effects of CFIDS (feeling down, lacking motivation, etc.) are really biochemical.

I've always said that I've been fortunate to have only very mild brain fog. Sure, I feel sluggish when I'm badly crashed, but otherwise my only indication of cogntitive dysfunction has been difficulty with word finding (a tough one for a writer!). I wonder now, though, whether my thinking has been more affected than I assumed. Many of the people on the immune support message boards taking Valcyte mentioned that the first improvement they noticed was in their cognitive function. Maybe these mysterious viruses affect us even more than we thought.

So, I'm still waiting and watching but feeling pretty optimistic. Now, don't get me wrong - I'm still napping every day, needing at least 9 hours of sleep a night, and feeling worse if I do too much - but any improvement is welcome.

I went for my week 5 lab tests today and will have a phone conference with Dr. Levine next week. I'll keep you posted!

Just Do It!

I've really been overwhelmed the past few weeks with all that's going on - family birthdays, writing deadlines, consulting work, and so many school functions! This time of year is always so hectic.

Today, I finally quit procrastinating - a favorite hobby of mine - and did my part for International CFIDS Awareness Day (which was May 12). Every year, I think I'll be able to participate in the CFIDS Association's Lobby Day, but it always falls at this busy time of year when I have no energy to spare. Fortunately, they've made it easy to help out, even for those with CFIDS who are unable to leave their homes.

Just use this link to go to the CFIDS Association's Grass Roots Action Center.

They currently have 5 different actions you can take from your computer. Each one sends letters to different political and media people to help raise awareness of CFIDS and support greater research funding. The CAA provides the letters; all you do is click a few buttons and add your name and address. You can also add a couple of your own sentences that describe how CFIDS has affected your life.

I just took all 5 actions, sent a bunch of letters, and it took less than 10 minutes! You only need to enter your information once, and you can write your couple of sentences once and just paste them into each letter.

It's FAST, it's very easy, and it really does make a difference.

There have been some remarkable advances in research in the past two years, but it won't go anywhere without additional support and funding. So, do your part. Go now....

Just do it!

I Think I Can...

Remember the Little Engine That Could? That story is a perfect illustration of the way that I was brought up. I have always believed that I could do anything I set my mind to, that anything was possible if I only worked hard enough. So, why can't I get well? This has been one of the hardest things for me to accept about being ill - that I don't have control over my body or my life in the way I thought I did.

If a strong will was all that it took to get well, I would have overcome this illness long ago. I want so much to be able to be active again - to exercise, lose weight, rebuild some muscle, have energy for my husband and family, even simply just to take a walk on a beautiful day without worrying about the consequences. I want all of this with every bit of my being, but that's not enough.

Besides a strong will, I've also worked hard to get well. I rest as much as I can, watch what I eat, try to reduce stress. I have no alcohol, no caffeine, no dairy. I limit my activities - social, mental, and physical. I read and research and try everything that sounds promising. But all this hard work doesn't do the trick either.

I do what I can and control what I'm able to. I'm certain all this effort hasn't been in vain. It's what's keeping me able to function as well as I do. I'm not bed-ridden, like so many other people with CFIDS. I still have much to be grateful for. It's just that, some days, I want more. I want wellness and health.

So, I keep trying.

I've been on Valtrex for a week and a half so far. I felt pretty rotten last week, but I was under a great amount of stress. I've had the gastrointestinal problems that Dr. Levine warned me about, but those seem to be easing a bit this week. I have to keep reminding myself that this is a long-term treatment (6 months) and not a cure, but I would so welcome even a little bit of improvement.

I think I can, I think I can....

Whirlwind Week

We've had another crazy, exhausting week here. I can't even seem to find time to write regularly!

Both of our boys ended up being out sick from school all last week. I was pushed to my limits trying to take care of them, worrying about them, and dealing with school issues. Craig had a virus that's been going around our area, with sore throat, cough, and losing your voice. He was horribly sick for about 6 days but, thankfully, bounced back by Monday in time to head back to school.

Jamie, our 12 year old, just wasn't recovering. At first, we thought it was "just" a CFIDS crash, but since Jamie's been on Florinef, his crashes have typically lasted only 2-3 days. We'd noticed some mild fatigue and brain fog for several weeks, and then the 8-day severe, can't-get-off-the-couch crash. When he started telling us his knees hurt horribly, the lightbulb went on in our minds. Pain has never been an issue with Jamie's CFIDS, and now his knees hurt so much that he couldn't get up the stairs or walk without severe pain.

In our area, sudden joint pain, fatigue, and brain fog usually mean one thing: Lyme disease. By Monday, we were convinced of it. Jamie's severe crash symptoms had improved, but he could barely walk and was still moderately brain fogged.

I took him to see his pediatrician Monday, and she did a thorough exam. Her first suggestion was to test for Lyme, and, if the test was negative, wait another 6 weeks and test again (the antibody test is often negative for the first 6 weeks of infection). I pushed hard to start antibiotics right away (after having the blood drawn) because of the very high risks of leaving Lyme untreated in someone with CFIDS. Lyme is one of the known infections that can trigger CFIDS to start or trigger a severe relapse. She understands CFIDs and has been very supportive all along, so she agreed.

Jamie started 30 days of doxycycline on Tuesday. Within 24 hours, his knee pain began to abate, and his brain fog lifted dramatically. Even though I was pretty certain he had Lyme, I was still stunned by the quick change. His natural sparkle was back!

Meanwhile, my husband's been out of town all week, and we've had an exhausting itinerary of doctor's appointments, soccer, and chorus rehearsal. Oh, and we were getting a new roof put on the house, so it sounded like elephants were crawling on our roof - tough to nap! Jamie and I spent over 2 hours at the eye doctor's on Tuesday (he needs glasses). Anyway, I'm totally worn out.

This experience just emphasizes - once again - that we have to be our own (and our children's) strong advocates, trust our instincts, and be aggressive in seeking answers when we know something isn't right. It's hard work, but we can't let ourselves get lost in the mainstream medical system.

News from Planet Jackson

It's been one of those weeks. Both boys have been home sick for four days now, and I've been pretty badly crashed most of the week as well (doing much better today). At times like this, our universe shrinks down to these four walls, trying to relieve symptoms, rest, and do a little homework.

I had perked up enough by last night to go to my neighborhood book group. Even though I was physically still a little run-down, getting out of the house and getting my mind off illness and school was a huge mental and emotional boost. I came home feeling tired but refreshed, and I feel much better today.

As I walked home from my neighbor's house last night, I felt like I was returning to my home planet after visiting an alien world. I thoroughly enjoyed the wonderful conversation of my book group, but when I'm in a group like that, I become aware of how different my life is from everyone around me.

I enjoy these brief immersions in the "normal" world. Book groups (I belong to two) are especially nice because I can discuss the book on an even level with everyone else. Reading is one of the few things I can do just like any other person. Toward the end of our meeting last night, though, the talk turned to other topics. The women around me talked about travel, home improvements and decorating, visits to museums, and other topics of their foreign world. I felt like a reporter from another planet, listening and observing an alien lifeform. I enjoyed the conversation, but there's always a part of me that feels different and separate.

Here I am today, back on my own planet, taking care of sick kids, e-mailing teachers, distributing clipboards and notebook paper to my prone children, and helping with homework. It's a different kind of normal, but it's ours and I'm grateful for what we have and the joys we're still able to experience.

Test Results and Next Steps

Finally! I spoke with Dr. Levine for a half hour today to review my blood test results and discuss treatment options.

My viral antibody tests were positive for HHV-6 and negative for CMV (unusual for someone with children she said). She couldn't find my Epstein-Barr Virus results while we were on the phone (though I've had EBV tested several times during the past 5 years with normal or borderline results).

Then she reviewed my immune system test results. My immunoglobulin IgG was low and my Natural Killer (NK) cell function was in the low-normal range. She said the lab listed "normal" as 3 and up; my NK function was 17. She said a healthy person should have a NK function in the 50-60 range, so she'd like to bring mine up a bit. I suspect that some of my past efforts to improve my immune system function have helped to keep my results from being too low.

Next, we discussed treatments. At first, she assumed I'd go back on Valcyte, since I'd been on it before and had asked about it during my visit. However, I've been feeling a bit nervous about the side effects and potential risks of Valcyte, so I asked Dr. Levine a lot of questions about risks and benefits.

She said she hasn't seen the same kind of dramatic results that Dr. Montoya at Stanford reported from his initial studies (she's talked to him extensively about his studies and her patients on Valcyte). Some of the reports I've read have emphasized that Dr. Montoya's Valcyte patients all had very high levels of HHV-6 and EBV in their blood. Dr. Levine said she currently has 7 CFS patients on Valcyte and none has experienced lasting improvements. One improved initially but then felt worse again (typical unpredictable CFS, right?), and another recently quit taking Valcyte. In addition, she confirmed the significant risks of Valcyte that my own doctor and I had discussed previously. It definitely affects bone marrow and may have a theoretical increased cancer risk (hard to say, since there's not enough data on CFS patients yet).

Finally, she suggested we keep Valcyte on hold as a second-line treatment to try later if other treatments don't work. Instead, she suggested a three-part approach for me, adding a new treatment on each month if I seem to tolerate them well:

1. Valtrex, probably for 6 months. Valtrex is another anti-viral, well-known for its use against more common types of herpes virus. It has no side effects and none of the serious risks of Valcyte and is far less expensive than Valcyte.
2. After 4-6 weeks, add a tiny dose of naltrexone to boost NK cell function.
3. If those are well-tolerated after another month, add weekly injections of gammaglobulin to help increase immunoglobulin.

It's a two-pronged approach to eliminate HHV-6 while also helping to improve immune system function so that I might be better able to fight off infections on my own. Dr. Levine emphasized that this isn't a cure, but she's had patients improve somewhat, to "a new plateau level," as she put it. I said I'd welcome any level of improvement.

What does this all mean for me? I think I'm relieved to have other options. I was getting really nervous about Valcyte, especially at such high doses and in the absence of very high blood levels of HHV-6 and EBV. I was also starting to feel stressed looking at the calendar and wondering how I'd handle two months of getting much worse (as often happens initially on Valcyte). I like the plan to try something milder first. At the same time, I've had to admit to myself a bit of disappointment that there's no miracle cure (yet!). The initial news of those 22 patients who improved dramatically on Valcyte was (and still is) pretty exciting, and I may have gotten my hopes up.

I think all of this emphasizes what many CFS experts have been saying for years - that there are likely subsets of CFS, initiated by different triggers and probably responsive to different treatments. I still feel very, very optimistic about the terrific progress in CFS research in the past few years; Valcyte is likely just one of several breakthroughs we'll hear about in the near future.

I'm glad that I went to see Dr. Levine. Being someone who likes to deal with hard data and scientific fact, I am thrilled to have some real information on what's going on in my body, even if the picture is not yet complete. There is nothing more frustrating in the early days of CFS than all of those lab tests that show everything is "normal" while you keep suffering. I think I'll take my boys up to see Dr. Levine during the summer to see what their blood tests show.

Whew, that's enough for today. I've been in a fairly bad crash the past two days. I'll let you know how things go with this new treatment plan.

Still Here!

Yes, I'm still here. The past two weeks have been a whirlwind of activity here. I traveled to NYC for my appointment with Dr. Levine (more on that in a moment). We went to Maryland for a wonderful, relaxing camping weekend with friends. It was so low stress that I actually managed a 2-hour hike with everyone and still felt good the next day! I was amazed and wondered if that burst of stamina was the result of my brief Valcyte trial...but the past week brought me back to reality.

My boys had their Spring Break last week, so we had a few days at home between trips and then drove 8 hours to visit my family in Rochester for Easter. It was wonderful to see my family, but the trip completely exhausted me. I sleep so poorly when I travel, despite all my various medications that work so well at home (unless we're camping; I do OK in our camper). I was a mess today and spent most of the day in bed, but now I'm beginning to perk up a bit. Can you see why I haven't had time to write?

There isn't much to report yet on my visit to Dr. Levine because I'm waiting for her to call me. I gave her a brief recap of my illness and told her about my aborted trial with Valcyte. She said I could try Valcyte again, this time at the full dosage being used in the Stanford studies. Then she took a LOT of blood to run tests for various viruses as well a a full immune system panel. I was excited about this because I've wanted the immune system panel for awhile now, but my own doctor said she wouldn't know what to do with the results.

So, I'm still waiting for Dr. Levine to call back with the results of my blood tests. She said she might end up trying some other anti-virals or additional medications based on the results. I have a list of questions for her when she calls. I want to make sure I fully understand the risks involved before taking the high doses of Valcyte. At the same time, after this exhausting weekend, I'm eager to try something - anything that might offer some hope. I'm really sick of being sick.

I was catching up on e-mails this morning and saw more useless CFS studies. I'm so fed up with seeing precious research money being spent on proving that CFIDS isn't depression (it's been proven many times already) or on minor treatments or supplements that offer only a tiny improvement. This morning, I saw a very lengthy treatise on "managing CFS through pacing." I don't want to manage this illness; I want to get rid of it! The glimmer of hope that there might be a chance for recovery makes me impatient with all these management strategies (even though they have helped me a bit over the years).

OK, enough ranting for today. I need to go pick up Craig from school. I'll write more soon.

Around and around it goes...

I'm finally beginning to improve a little from my bronchitis (and low white blood cell count), but yesterday, my 9-year old son, Craig, started to cough. When will this end? Between the two boys and me, we've had 5 cases of bronchitis in under two months. I don't know how my husband manages to stay healthy.

Craig doesn't actually have bronchitis yet - the doctor today said his lungs are still clear - but his sinuses are swollen again. With his history of sinus infection and our family's run of bronchitis this week, the doctor put him back on antibiotics today. His fever spiked up to 104 tonight. The poor kid is miserable. To make matters worse, it's state testing week at school here in Delaware, so he's missing that, too.

As for me, I'm going back to the lab tomorrow or Friday to recheck my white cell count. I also made an appointment today with Dr. Susan Levine in NYC. She's an infectious disease specialist and a well-known CFIDS doctor. She was recommended by a bunch of people at the immune support message board and is well-versed in using anti-virals for CFIDS. I was shocked to get an appointment with her for next week! I was worried she'd be booked for months.

I'm still pretty sick but am feeling good about seeing Dr. Levine next week. I know my family doctor will be relieved to hear it, too.

Thank you so, so much to everyone who has left me such wonderful, supportive comments this past week. I was really down, and it helped immensely to hear from all of you. I also got an amazing note from my oldest friend (thanks, Michelle!). Knowing I'm not alone makes all the difference!

Rough Times

I had a really rough weekend. Friday afternoon, my doctor left me a message that I needed to stop taking Valcyte immediately. My labwork results had shown very low white blood cell counts. It's probably due to the bronchitis, but Valcyte is known to affect bone marrow. I was upset about stopping the anti-viral, but I could tell my doctor was seriously concerned, so, of course, I listened to her.

Over the weekend, my bronchitis got much, much worse, despite the anitbiotic. Saturday passed by in a fog. I had severe, deep aches all over my body. My chest and sinuses were solidly congested,and I was coughing so hard that my ribs ached by Sunday. I mostly just stayed in bed with the heating pad. It was one of those days when I was too sick to even read or watch tv.

Sunday was a bit better, but I still feel pretty rotten today. I got up, had breakfast, read for a half hour, then went back to bed for a two-hour nap. I shouldn't even be sitting up to type this, but I was feeling desperate for some kind of connection with the outside world.

Worse than the physical problems today, I'm feeling so depressed. I'm so sick of the burdens of CFIDS, of living every minute of every day in this constant battle with my own body. I've had enough of all these limits and restrictions. I want to live freely again.

Rationally, I know that I'll feel better about my life when I start to feel better physically, that the bronchitis will eventually clear up and I'll be able to get back to my usual optimism. Emotionally, though, it just all seems so useless right now. I just want to give up, quit fighting, and somehow escape. That's impossible, of course. That's the most frustrating aspect of living with CFIDS. There is no escape, no vacation from it, just an occasional good day (if you're lucky).

Back to bed.

In Need of Nurturing

It's been one of those classic CFIDS rollercoaster weeks. I felt great on Monday, one of my best days in years. I was not only free of most symptoms, but I actually felt full of energy and motivation. Wow! I felt like me again. I cleared off the months-old clutter on the kitchen counters, walked to the bus stop to pick up my son instead of driving, sent off several writing pitches, and baked homemade blueberry muffins for my son who was home sick. Yes, I baked - for the second day in a row - amazing.

Then came the crash. My older son had bronchitis early this week, and as he started to feel better, I started to feel worse. Yup, another case of bronchitis, my second in about a month.

My doctor had warned me that being on Valcyte would make me more susceptible to bacterial infections, and, sure enough, I seem to be catching everything that comes through the house. So, I'm back on Zithromax (antibiotic) and feeling horrible today. My chest feels like it's in a vise, and my legs ache terribly.

Usually when I'm crashed, I'm content to just be alone during the day so I can rest, but today I'm yearning to be taken care of and nurtured. Maybe it's the more traditional "sick" symptoms of my bronchitis triggering memories of childhood.

When I was a kid and got sick, my mom would go into full nurture mode. She'd set me up in my bed with a drink to soothe my sore throat and my favorite Nancy Drew books by my side. When she made a trip to the drugstore for a prescription, she'd come back with comic books or a magazine and a thick chocolate shake from the local burger place. Anytime I got sick, she'd make my favorite baked egg custard pudding with a sprinkle of nutmeg on top. (That's me feeling nurtured; dig that 70's wallpaper, huh?)

Lying here alone with my aches and cough, I'm yearning for that same feeling of being cared for. My husband, Ken, does a wonderful job of taking care of our kids and the house when I'm too sick, but I would love some of that mommy-style nurturing. It would be so nice to have someone here to offer to get me another cup of tea or to pick up a favorite magazine for me at the drugstore with my medicines. And that homemade custard would feel so nice on my raw throat.

Ah, well. It's just me today. "Talking" here on my blog helped me feel a little less alone, and when everyone gets home tonight, I'll probably wish for some peace and quiet!

Valcyte Update

Lots of people have been asking me about my trial of Valcyte, so I guess it's time for a quick update. I've been avoiding focusing on it too much mainly because there's not much to report yet. I'm still not sure whether it is going to work for me or not.

I have now been on Valcyte (at a low dose of 450 mg per day) for 8 weeks. I'm thinking of this week as something of a turning point. Most CFIDS patients who've tried Valcyte report a worsening of symptoms beginning at around week 2 and lasting until week 8 or so. The general theory is that if Valcyte is going to work for you, you should experience this worsening as a sign that the virus in your cells is being killed off by the medication and is entering your blood stream.

So, did I experience a worsening of symptoms in the first two months? I'm not sure. I've certainly had my share of bad days lately, with a few good ones thrown in, but it's hard for me to tell if this is just the typical ups and downs of CFIDS or the result of the Valcyte. Many people with CFIDS who've taken Valcyte get so much worse so suddenly (most advise to plan on being bedridden for at least a few weeks) that they don't understand how I could not know for sure. There are two factors that make my case unique, though:

1 - I'm on a much lower dose than most (the official Montoya trials use 1800 mg per day for the first 3 weeks, then 900 mg per day for the rest of the six months)

2 - I started off in better shape than most. Understandably, Montoya chose some of his sickest patients for his first trial. Many were bedridden or similarly incapacitated. I function at about 40-50% of what I could do before getting CFIDS - quite impaired but considered "mild to moderate" for CFIDS.

So, for these reasons, it seems logical to expect my reaction to Valcyte to be less dramatic than what has been reported so far in most patients.

This next month will be the real test for me. If Valcyte is working, then I should begin to see some gradual improvement in this third month. If I continue to function at the same level, then it's likely this particular anti-viral won't work for me. So, I'm getting my labwork done this week and will refill for one more expensive month before deciding whether to continue. Don't worry - I'll keep you posted!

What Are You Looking Forward To?

I've been feeling kind of depressed the past few days. It's not the black despair that I felt in my first couple of years with CFIDS but just a vague feeling of being dissatisfied, tired of the same old routines, yearning to do all sorts of things that I can't. It's just that old "sick of being sick" thing, you know?

My illness-expert psychologist (her grown son has CFIDS, too) was very fond of asking me, "What are you looking forward to?" whenever I got down. She felt this embodied one of the key characteristics of depression. She said that people who were clinically depressed didn't want to do anything and weren't looking forward to anything. In contrast, people who are struggling with chronic illness and just feeling "down" had long lists of stuff they wanted to do, if only they could. So, I've gotten into the habit of asking myself this question when I'm feeling low, to remind me of the good things in my life.

After a rotten morning where everything seemed to go wrong, I paged through my Joy Journal this afternoon. I started this journal several years ago, pausing at bedtime each night to jot down whatever small joys I had experienced that day. It was a wonderful exercise, helping me to focus on the good stuff and realize that there were opportunities for joy even on my worst days. I've gotten out of the habit of the journal in the past year - probably a good sign, meaning I'm able to see the joys in my life now without much effort.

Looking back through the journal, I see that many of my joys were such simple things: sunshine, being outdoors, sharing moments with my husband and kids or a friend. It's nice to remember how many joys I still have, despite my limitations. So, I'm treating myself to a cup of my favorite Orange Zinger tea and a square of dark chocolate, and I'm looking forward to watching the DVD I picked up at the library this evening. Other joys today: I saw a cluster of robins on the lawn, a sure sign of spring on its way; and my younger son, Craig, just came bouncing off the school bus, looking like his usual energetic self, after a four-day crash. Now that's something to smile about.

What were your joys today? What are you looking forward to?

Happy Anniversary?

Friday was my 5th anniversary of getting CFIDS. On March 1, 2002, I was my usual self: energetic, active, and healthy. I woke on March 2 with a horrible sore throat, feeling exhausted and achy all over. I thought I had the flu, but...well, you know the rest.

Over the years I've had some pretty dismal anniversary days. There was the first one, when I had been terribly sick for a full year and still didn't know what was wrong with me (I was diagnosed soon after). At my two -year anniversary, I was in my worst crash ever and feeling very depressed. In year three, my own poor health was secondary to the fact that my oldest son was now officially diagnosed with CFIDS, too. Our whole family was struggling to come to terms with that unthinkable situation. By March 2 of last year, Jamie was starting to improve, thanks to Florinef, but it was becoming clear to us that our younger son, Craig, was also developing CFIDS.

This fifth anniversary is much better, but with some bitter undertones. Florinef has caused such a dramatic improvement for Jamie that he's back in school full time and able to live a mostly normal life (as long as he takes his medication). We are now quite sure that Craig has CFIDS but are hopeful that Florinef will help him as well (he's home sick today - again). As for me, I'm certainly in better shape than in previous years, and CFIDS research in the past year has offered plenty of much-needed hope. The Valcyte trials and my own personal trial with it are particularly exciting to me.

Behind this new hope, though, I'm recalling that Dr. Bell and other experts often cite five years as a critical turning point. The common understanding is that the very few recoveries from CFIDS that occur happen in the first five years and that almost no one recovers after five years of CFIDS or more. So, I've now crossed that line. Of course, the latest research on genetics and viral infections offers new hope that even the top CFIDS experts couldn't have predicted a few years ago.

Five years seems both too long and too short. In some ways, it's amazing to me that I've been sick for five whole years of my life. At other times, it's amazing that it's ONLY been five years because my "old life" seems so long ago and far away.

My family and I keep pushing forward, trying to focus on one day at a time, and remaining optimistic about the future.

Normal is Nice

I thoroughly enjoyed my day today, a day that would be considered very ordinary to most people. Other than my afternoon nap, it was simply normal. After the past two difficult months, normal was very nice.

I went into my son's third grade classroom this morning to participate in their Breakfast Buddies program. It was the first time I've been able to help out in Craig's class this year. What a thrill!

Jamie was home sick today, but so were some of his friends. This may actually be a garden-variety cold. This afternoon, I took him to the doctor for his annual physical. He's now 5' 3" - no longer any doubt that he's passed me up!

The most amazing thing about today was that I was able to interact with other people in such a normal way. I didn't notice a single CFIDS symptom all day, so I felt well enough to chat with the other parents in Craig's class and trade pleasantries with the receptionist at the doctor's office. That kind of ordinary interaction with other people is what I miss most.

All in all, a very normal, nice day.

Happy Mardi Gras Day!

We used to live in New Orleans, and Mardi Gras is still a major holiday for us! This year was scaled back considerably, though. With Mardi Gras weekend falling right on my niece and nephew's birthdays and the uncertainty of my new anti-viral treatment, we made the difficult decision to skip our traditional party. Even in its abbreviated form, it would have been too much for me this year. Ken had to go out of town this week for work, so he's not even here to celebrate Mardi Gras day with us.

The boys and I are still celebrating, though. They had green, gold, and purple sprinkles on their oatmeal this morning and wore their "party shirts" to school with some Mardi Gras beads. Tonight, we're heading over to our friends' home for our annual Mardi Gras feast of Popeye's chicken and red beans & rice, with bread pudding and King Cake for dessert. Mmmm!

I'm doing quite a bit better than the last time I wrote here. My bronchitis cleared up with the antibiotics. It's now been a full month since I started Valcyte, and I'm generally doing pretty well. Still too early to tell if its the treatment or the usual CFIDS fluctuations.

I was certainly in far better shape this weekend than a year ago. We traveled to Connecticut for my niece's 5th birthday and my nephew's 1st birthday. My Mom noticed how much better I handled the noise and chaos of a preschool birthday party this year. It was a Superman/Wonder Woman party - as always, my family got into the spirit of the occasion (that's my Mom, my sons, my niece, and me)! I was actually able to enjoy myself this year.


So, check out the great photos, videos, and live webcams at Nola.com for a little taste of the festivities. Laissez les bon temps roulez!

Setbacks and Struggles

Another lost week. I caught Craig's bronchitis, and it completely knocked me out this week. Plus, Craig's infection recurred, and Jamie had a 1-day crash. I was so sick that I spent 3 days in bed. On Wednesday, both boys were home sick, and I pretty much ignored them (they watched way too much tv!).

So, I'm on Zithromax, and Craig is back on it. The boys are both back in school (just in time for the weekend again), and I'm doing a lot better, though still kinda crummy with really low stamina.

I saw my doctor on Tuesday when she diagnosed the bronchitis. Of course, this infection muddies the waters and makes it difficult to tell what, if any, effect the Valcyte is having. I talked to her about dosing, and she said this is as high as she feels comfortable going. I had my labs done today, so we'll see what they show. I will probably refill the Valcyte for one more month to give it some more time, unless my doctor sees something alarming on my blood tests.

Now that I'm out of bed, I feel so overwhelmed. There are stacks of paperwork everywhere (bills, school stuff, mail), about 80 e-mails in my inbox, and so many writing projects waiting. For the past 6 weeks, I feel like I've been in survival mode, every day just focusing on getting over the next hurdle, never able to move forward or get much done. I know it's this way for everyone with CFIDS (and plenty of healthy people, too!), but it's been especially bad for me since January 1.

My next hurdle is another half day of consulting on Monday, so I'll need to take it very easy this weekend (again) to make sure I'll be able to do it. Then, I'll need to recover quickly because we're driving 5 hours to my sister's house next weekend for my niece and nephew's birthdays. It'll be a busy, chaotic, crowded weekend, so I'm worried about that, too!

Just one day at a time, right?

Two Week Update

Whew, where did the week go? Both of my sons were home sick this week, so it was almost impossible to get anything done. Craig had bronchitis; Jamie had your run-of-the-mill CFIDS crash. Both are doing fine now. They went back to school yesterday, just in time for a 4-day weekend! This is the first crash Jamie's had since mid-October, and he only missed two days of school this time. Absolutely amazing compared to how sick he was last year.

So, I'm sure you're wondering whether the Valcyte is working for me. I'm wondering, too! I've been on it for two weeks now. From what I'd read, I was expecting a sudden worsening of my symptoms as an indication that the Valcyte was working (this is called a herx reaction, common when treating a long-standing infection). I felt pretty crummy for the first week and a half, with really low stamina. I couldn't really tell if this was my "worsening," though, since I'd been in a crash since January 1. Yes, it was worse than "normal" for me but not much different from how I'd felt all month. I was feeling a little down, thinking I'd had no reaction to the medication at all, and it wasn't going to help me.

Then I began exchanging information with other CFIDS patients on Valcyte. THANK YOU to all the people who told me about the message boards at Immune Support!!! Reading about other people's experiences and other doctor's approaches has made a huge difference for me. If you're interested, there are several discussion threads specifically about Valcyte and other anti-virals. You have to register, but it's free and quick.

One thing I learned is that Dr. Montoya is using a much higher dose of Valcyte in the Stanford trials than I'm on. At first, I worried that my dose was too low, but I've learned that some doctors are using lower doses to try to minimize the initial worsening. I'm also wondering whether a lower dose might be appropriate for me since I'm not as severely ill as most of the people Dr. Montoya is treating. I've had CFIDS for just under 5 years and function at about 40-50% of what I could do before getting sick. It's bad, but I know that there are plenty of people with CFIDS who are much sicker, even bed-ridden. I've also done a lot already to help improve my immune system function, which could help me to better tolerate the anti-viral treatment.

So, bottom line is that I'm still not sure whether the Valcyte will work for me. I had three very good days (in a row!) this week, but I'm crashed today after a shopping expedition yesterday. Next week, I'll go to the lab for blood tests to monitor how I'm reacting to Valcyte, and then the week after, I meet with my doctor so we can decide whether to continue the treatment. After what I've learned this week, I'll also talk to her about the dosing.

If you're interested in learning more about treating CFIDS with anti-virals, Dr. Martin Lerner is another doctor who's done a significant amount of work in this field. His website includes an excellent summary of his research (click on Professional Publications).

So, I'll rest up today and hope for a decent weekend.

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.

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!

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.

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.

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...

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 fresh...it'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...

Day of Rest

Wow, I've really been neglecting my blog lately. There's all of the usual holiday stuff keeping me (too) busy but also a new development in my life that's both exciting and terrifying. Out of the blue, I've been offered some consulting work in my old field. Our finances have been especially tight this year, and the work is both local and flexible, so I've decided to give it a try. I've been dying to write about all this because I've been feeling so conflicted this week, but I'm just not up to it today.

I'm feeling wiped out today - sore throat, aches, the works. I woke up several times during the night soaked in sweat, too (what's that all about?). I've been pushing myself all week to do more and get things done, but today my body is leaving me no choice but to rest. Since I have a lot of trouble staying still and truly resting when there's so much to do all around me, I plan to pop in my video of "It's a Wonderful Life." It's my all-time favorite that I try to watch every holiday season. Today gives me a good excuse.

Rest and recover, and I'll write more about my scary work proposition in a day or two.

Viruses and CFIDS

Right after writing about how good I've been feeling, I had several days of feeling worse. My kids would say I jinxed myself! Still, I only felt mediocre, not horrible, and I'm back to doing pretty well this week.

Lots of CFIDS research has considered viral triggers for CFIDS starting or relapsing. Dr. Bell summarized it well in a recent newsletter. I've always felt that immune system dysfunction/activation was at the heart of my own illness, in part because every crash (since the very first day) started with a sore throat.

With three of us in the house now having CFIDS, the role of viruses in our illnesses has become even clearer. Shortly after Jamie first became sick, I noticed that he and I would often crash at the same times. Previously, I had assumed that all crashes were caused by over-exertion or stress, but the pattern of Jamie's and my crashes was strikingly similar.

This fall, with Craig now also diagnosed, the three of us went through several rough crashes - at about the same time and with very similar symptoms. It's become obvious that our worst crashes are triggered by exposure to a virus of some sort (lots of them around with both boys in school).

Just this past week, I was stymied as to why I was suddenly feeling poorly again. I thought it might be an approaching storm front, but the barometric pressure finally rose again on Saturday and I felt worse than ever. I commented to Ken that my legs and hips felt unusually achy. Sunday I felt better, but by Sunday evening, Jamie was complaining that his hips ached! This is not a normal symptom for either of us; it must have been triggered by exposure to the same virus. Fortunately, our overactive immune systems quickly recovered, and we're both feeling good again this week. In retrospect, while I was feeling poorly last week, Jamie was struggling with a lot of brain fog during homework time every evening.

I try to avoid offering advice on treatments because I know it's not always well-received. I myself often react negatively to others' advice, particularly claims of a cure or complete recovery. I'm going to briefly depart from my own restrictions, just to mention some immune system supplements that have definitely helped me to improve over time. Certainly not a cure, but I've welcomed any improvement at all, and I'm fairly high-functioning now. While lots of treatments help symptoms, I feel that these focus on the root cause in CFIDS, the immune dysfunction.

By the end of 2003, I was at my worst. My throat hurt almost all the time, instead of only at the start of a major crash. Frustrated that the only medication for immune system "balancing" was unavailable in the U.S. (Immunvir), I conferred with an herbalist who suggested mushroom supplements. Within a month, I felt significantly better, and my sore throats were back to only appearing during crashes. I've maintained this improvement for several years now and still take the supplements every day. There are two good ones available: RM-10 and Host Defense. These are both quite expensive. I found the best prices at Web Vitamins, and my insurance company gives me an additional discount there.

The other immune supplement that has helped considerably is olive leaf. I read an article somewhere that olive leaf had anti-viral, anti-bacterial, and anti-fungal properties and decided to try it (at roughly the same time in 2003). I had required antibiotics several times that year to combat sinus infections and bronchitis, reacted badly to them, and wanted to avoid them. In short, it worked. Since I started olive leaf two years ago, I've only had one sinus infection (this fall). My husband now takes it when he's exposed to a virus or feels a canker sore starting. We treat it like a miracle drug around here! Last month, after being assaulted by so many viruses in September and October, I started taking olive leaf every day (twice) rather than only when exposed to something. I have no idea why I've been doing so well, but I'm wondering if the olive leaf is behind it, especially with more and more research pointing to dormant viruses in people with CFIDS. November was the best month I've had in over four years (yes, I keep track!)

Kind of long-winded today, but I hope that someone out there might be helped by my experiences. Book group tonight - can't wait!

Back to the Blog

I knew I hadn't written in my blog for awhile, but I didn't realize it had been almost three weeks! This is good news...I've neglected my blogging because I've been feeling well enough to be engaged in other pursuits and have used my writing time for earning some much-needed extra money. So, how about a quick re-cap of the highs and lows of the past three weeks?

A definite high - we enjoyed one last camping weekend this season with a wonderful trip to one of our favorite parks (a beautiful place with the unlikely name of Turkey Swamp). The weather was nice, we hiked and geocached, and enjoyed just getting away from the phone, TV, computers, etc.

Then, a series of relative lows (though, in perspective, nothing horrible)...a $2000 repair bill for my aging VW, an electric surge burning out our washing machine and requiring a new one (the same week as the VW), and yet another sinus infection for Craig. Then a big one...

Two Fridays ago, with Ken out of town, I let the boys have a friend sleep over, and we ended up in the ER until 2 am. It was a freak accident (not so unusual for Craig) - in trying to clear off the bed in the dark, Craig tripped and hit his head on the nightstand. I heard a piercing scream, ran down the hall, and found my sweet little boy covered in blood. Pretty gruesome. He got 16 stitches, and Ken got yet another phone call as he returned home that he should meet us at the children's hospital. Believe it or not, this was the third time Ken has returned from a trip and had to meet me or the kids at the ER (and he doesn't even travel very often!). Our little Frankenstein is healing nicely now and had his stitches taken out last week. That makes four head injuries in his scant eight years.

Finally, we had the usual holiday frenzy. We flew to Oklahoma last week to spend Thanksgiving with Ken's parents. Our nephew and his family joined us from Texas, and we had a wonderful time. I was dreading the flights, but it all went well. I made a special effort to intake lots of salt and keep my blood pressure up, and I fared much better than on previous flights.

I've really been feeling good this past month and hoping it will last!

CFS Awareness Bracelets

I recently read an article about a mother and daughter who have started a business making jewelry, including awareness bracelets for CFS and other illnesses. I went to their Girlie Girls Jewelry Studio website and was so impressed!

This is my personal favorite of the two CFS awareness bracelets they show. I've already told Ken I want one for Christmas! They chose stones based on traditional healing properties, and part of the price goes to the CFIDS Association of America to support CFIDS research. My boys love these, too; I've already e-mailed the Girlie Girls to request a male version (sans flowered beads).

Check out their website which also includes bracelets for breast cancer, arthritis, diabetes, and more, plus some other beautiful jewelry designs. Get a head start on your holiday shopping, support CFIDS research and awareness, and pass the word along!

Living in a World Apart

We spent our Saturday immersed in soccer activities. Each of our sons played in their last games (3 hours on the chilly sidelines for me), and we went to an end-of-season bonfire party Saturday evening. Too much for me, of course, and I felt rotten on Sunday, but the boys both handled the heavy exertion well.

I found myself focusing more on emotional impacts, rather than the obvious and expected physical effects, though. Spending the entire day with a large group of casual acquaintances reminded me that we live in a different world. I was surrounded by people most of the day but felt very alone. It's like living in an alternate, invisible universe.

For starters, at both the games and the bonfire, most people were standing around, talking, while I had to sit. It's a small thing, but it separated me from the other parents. At the games, I wondered if they thought I was shy or even stuck-up because I wasn't standing with them and talking. I have always enjoyed social gatherings - used to be something of a party animal, in fact - and it still feels strange not to be at the center of the fun.

When someone did sit next to me and I tried to engage in conversation, I found that it was pretty one-sided. When someone I don't know well says, "How have you been?", the only appropriate answer is just to smile and say, "fine." Even with a Mom that I know better (and who knows of our health issues), I didn't want to bore her or scare her away. If I'm honest and talk about our daily challenges - and even our successes - she looks at me with pity and doesn't know what to say. So, I keep it light and positive and shallow.

When I manage to include myself in a group conversation, there's so much that sets me apart. Other parents ask what sports our boys are playing this winter. How can I explain that we're relieved to have made it through one sports season and can't manage any more? Two friends told us about a family summer camp they go to every year, saying, "You guys should come. You'd love it!" How can we explain that an action-filled week like that is completely impossible for us? Everyone is drinking beer and talking about how last year's bonfire party lasted past midnight. How do we explain that our boys need to go to bed before 9, even on weekends?

The answer, of course, is that you don't explain all these things. It's impossible for people leading normal lives to understand how different our life is. To try to explain would only alienate them and make them pity us. So, we just smile and keep our mouths shut. By the end of the night, I felt as if I hadn't honestly interacted with anyone. I've always been an upfront person - what you see is what you get - so this kind of superficial interaction feels false and unsatisfying to me.

This really is an invisible illness. Parties and other social gatherings that I used to enjoy just leave me feeling isolated and alone. I feel I have more in common with other CFS bloggers who I've never met in person than with the other parents in my own town. It's as if the world is now divided into two types of people: those who understand CFIDS and those who don't.

As Ken reminded me at bedtime, we have a wonderful life together with our two sons. We do a lot of great things together and have plenty of fun. I am quite satisfied with my life most of the time. I am grateful for our little family and the world we've created together, even with the shadow of CFIDS. My world has grown smaller, but I feel at home in this small world and blessed by the love of my small circle of friends and family who do understand.

A Big Day for CFIDS!

We are so excited here about the huge CFS publicity campaign that's being kicked off this morning! It looks like CFIDS will finally get the attention it deserves in the media, leading hopefully to a more informed public and better-funded research.

At the CDC's press conference this morning, they'll be announcing the NIH's seven new grants for CFS research studies. They all look like solid, useful scientific studies. Hooray!

The media coverage began last night in a big way with an excellent story on CFS on the NBC Nightly News featuring Jennie Spotilla, a fellow CFS blogger. Jennie's interview was awesome, and the whole story was well-done and accurate (a miracle considering past media coverage of CFS). CBS Evening News says they may run a story on CFS tonight, too.

Once the press conference is finished this morning and a story goes out on the wire, expect to see articles in newspapers and magazines across the nation. US News and World Report will run a CFS story in their Monday, November 6 issue. Other magazines have expressed an interest in covering CFS soon, including Glamour, Woman's Day, More, Shape, Self, Prevention, and First for Women.

So, tune in, keep your eyes open, and celebrate this long-overdue attention! Then go to the CFIDS Association's Action Center to send letters of support (it only takes a few minutes).

Hooray!

Fun, Fun, Fun!

We did it! We made it through another Halloween with everybody feeling well and able to go trick-or-treating. Holidays are so tough with CFIDS - all that fun and excitement can make you so sick. It's always a happy relief to come through one successfully. I went along for a bit of trick-or-treating at the houses near ours, then Ken took over and escorted the kids (our two boys, plus three friends) to the rest of the houses in our neighborhood. There's nothing like the thrill of Halloween night - dressed up in costumes, with your best friends, running from one house to the next, collecting candy. My boys just love it (and we do, too!), and I'm so glad they were able to enjoy it. I was prepared for crashes the next morning, but - surprise! - they both weathered the exertion OK. Maybe the Florinef is already starting to work for Craig. I felt pretty rotten yesterday morning, but a 2-hour nap and a shower revived me.

And now, all of a sudden, it's November, and the rest of the holiday season is upon us. Yikes! Time to start thinking about gifts and travel and cards and whew... Hopefully, the boys' good health will continue for the next couple of months.

Here we are on Halloween night. We decided to re-use our togas from Jamie's Greco-Roman Night school function last spring. Jamie, being in middle school now, went for the Ancient Greek-Zombie combo, and Craig chose to be a knight. Now we have huge bags of candy all over the house - tasty but dangerous!


P.S. CFIDS will be covered on the NBC Nightly News tonight and on the Fox morning show tomorrow for the kick-off of the big CFIDS Awareness Campaign in the U.S. Another CFS blogger will be interviewed on the shows - - be sure to tune in!