Wednesday, March 21, 2007

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!

Monday, March 19, 2007

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.

Friday, March 16, 2007

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!

Monday, March 12, 2007

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!

Tuesday, March 06, 2007

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?

Monday, March 05, 2007

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.