Thursday, December 24, 2009

Merry Christmas!

I've finally forced myself to lie on the couch for a few minutes - I know I've been pushing myself WAY past my limits these past two weeks. Now things slow down for a few days, thank goodness.

Last night, we hosted our annual Cookie/Grinch party, a 20+ year tradition with our very good friends. It started back when we both lived in New Orleans and we were all young and single (and childless!) Back then, the annual showing of The Grinch was a great excuse for a party (this was in the days when it was only on TV once all holiday season!). We both later moved to Delaware and continued the tradition. After the kids arrived, we added cookie decorating to the fun. At one point, the party grew to include 3 or 4 other families with kids.

This is one of those traditions we've adapted but not given up in the face of CFS. We shrunk the party back to just our two families, sometimes it's at their house and sometimes ours, and at one point, I even stopped cooking dinner and ordered pizza instead. I also gave up on homemade cookies and just buy the premade dough now. The kids only care about the decorating anyway! I did manage to make dinner last night, an old favorite from our New Orleans days, red beans and rice, at Jamie's request. But we still gather around the table with bowls of frosting and all sorts of sprinkles and other decorating accoutrements, and we still watch The Grinch (the original TV special, now on video). It's one of our favorite holiday traditions.

Tonight we're planning to go out to dinner (no cooking and no dishes!), then to church for the candlelight Christmas Eve service. Tomorrow is my favorite time of all - just the four of us with no where to go and nothing to do but play.

Hope you all have a Merry Christmas!!

Monday, December 21, 2009

Movie Monday 12/21

We spent the weekend in Connecticut celebrating Christmas with my mom and her husband and my sister, brother-in-law, and niece and nephew. Believe it or not, I got everything done last week without crashing (a Christmas miracle!), felt pretty well this weekend, and felt well enough today to go out (OUT!) and finish my shopping. I seem to finally be back to my own personal baseline, just in time to enjoy the holidays!

I really enjoyed spending time with my niece and nephew this weekend (and the rest of my family) and sharing our tradition of reading Christmas books at bedtime. Aren't they sweet? We made it home safely after the big Nor'easter storm, and the boys got two snow days - both today and tomorrow - so they got to start their Christmas break early! They played in the snow all day with their friends, and it was nice not to have to rein them in with worries of being OK for school tomorrow.

SO, we didn't have time for any movies this weekend, but Ken and I watched one over the course of several evenings last week (we can't stay up late enough on school/work nights to watch a whole movie!):
  • Frost Nixon, recommended in a previous Movie Monday comment by Toni. It was excellent - a fascinating story about the TV talk show host (Frost) who scored the big interview with Nixon after he resigned. Thanks for the recommendation!
We also just finished watching The Polar Express with the kids tonight. I'm generally not a big fan of full-length movies made from classic children's picture books (too much extra fluff added), but this one is pretty good and very well done. Now, I need to find time for my annual viewing of It's a Wonderful Life (makes me cry every year).

How about you? Watch any good movies this week?

Wednesday, December 16, 2009

Special iGive Promotion!

iGive is running a special promotion. For every person who signs up between now and noon Thursday and does just one web search, they will donate $1 to their chosen charity (plus, as always, your charity receives $0.2 per search, plus a percentage of all shopping done through iGive).

So, if you haven't already signed up, use this link to iGive, register for free, choose your favorite CFIDS cause, and do one web search. Then finish the rest of your shopping through iGive, too! That's what I plan to do after yesterday's exhausting shopping trip.

Holiday Frenzy

Whew. Yesterday was a long, exhausting day, made worse because of my holiday panic! December is always hectic, but losing a full week last week really did me in. I'm trying very hard to calm down and rest today.

I drove to New Jersey yesterday to see my Lyme doctor. I told him how badly flared up I've been all fall (CFS, not Lyme). I updated my charts before my appointment, and it was eye-opening (I keep track of how I feel each day). I was severely crashed and unable to do anything - 4 or 5 in my ratings - 30% of the time in September, 50% in October, and 30% in November. My knees have hurt a lot this past week, but I'm getting frustrated that I can't really tell whether it's Lyme or just because my CFS has been so bad. My doctor was very zen when I fretted, "How will I know when the Lyme is gone when I can't tell what's CFS and what's Lyme?" He said, "You knew when it started. You'll know when it's gone." Meanwhile, I'm still on 400 mg of doxycycline a day (16 months now) and he wants me to start on Plaquonil, which should help my knee pain and also help the antibiotics to better pentrate my cells.

After my appointment, I went shopping at Target for 90 minutes. There's a Target right next to the doctor's office, and the nearest one in Delaware is about 25 minutes away, so this has become part of my NJ routine. The store was packed with holiday shoppers, and I was trying to get as much Christmas shopping done as I could because I knew I might not be able to get out again. So, I didn't get home (a 90-minute drive) until 2:30, way past my usual nap time.

Then, we went to Craig's holiday concert last night. He plays percussion in his middle school band and did an awesome job on the bells in Carol of the Bells and in the lead role for Little Drummer Boy! As you can imagine, I was totally wiped out by the time we got home at 9 pm.

I was also mentally freaking out yesterday. There's a bunch of stuff we need done THIS week because we leave at noon on Friday to celebrate Christmas with my family this weekend. And Craig's teachers sent a note home yesterday that he needs to bring in 30 cookies for a cookie exchange on Friday! I slept horribly last night, with visions of Christmas shopping and other tasks undone dancing in my head.

I'm trying hard to calm myself down today. I'm dressed in sweats (a signal that I don't intend to leave the house or even the couch today). I can't give in and do nothing, but I'm lying on the couch with my laptop. Even though it's probably insane, I'm going to try to finish our annual year-end DVD of photos today, so I can give my family copies this weekend. I know I might not finish, and I'm resigned to that, but I know from past experience that if I don't do it before January 1, it probably won't get done.

I realized last night that there's really only 1 day all year when I really take the day off and don't worry about getting anything done - Christmas Day. On Christmas, it's just the four of us, here at home, with nothing to do but play and no where to go. I can't wait! But one day a year is really not enough, is it?

OK, it's time to stop venting. Breathing deeply...

Monday, December 14, 2009

Movie Monday 12/14

I won't have much time for blogging this week (or next) with so much to do for Christmas. In the next 3 weeks, we have holiday celebrations in Connecticut, Delaware, and Oklahoma! But it was a good movie weekend, so I wanted to at least keep up with Movie Monday!

The boys and I watched LOTS of movies last week, with all three of us crashed all week and splayed out all over the family room - Harry Potter 4 and 5, Bedtime Stories (which was better than I expected), The Last Mimzy, and whatever movie was showing on Disney at noon every day! It was a looong week. Thankfully, both boys went back to school today.

Ken and I watched more DVDs than usual, since all of our favorite TV shows are now on hiatus until 2010:
  • Lars and the Real Girl. OK, this one sounds really strange, but it was very good! It's about a lonely, extremely shy guy in a quiet northern town who orders a life-sized doll named Bianca from the internet and then treats her like she's his real girlfriend. I know, I know...Ken said to me, "Does the back of the DVD describe this one as quirky?" As a matter of fact, it does! It's funny but also surprisingly warm and sweet, with a great performance by Academy Award-winner Ryan Gosling.
  • The Great Debators. An amazing movie starring Denzel Washington and Forest Whitaker based on a true story of the first African-American college debate team that competed against white colleges, including Harvard. It's set in the 1930's in Texas and is both disturbing and inspiring. It's the kind of movie that gets you cheering for the protagonists! I'd love for Jamie to watch this one, too.
  • The Kite Runner. Ken and I both read and loved the book, and the movie was just as incredible. It's a fascinating story of two boys growing up in Afghanistan before the Communists invaded. One boy, Amir, is the son of a wealthy, well-educated father, and the other, Hassan, is the son of their household servant. The boys are best friends until something terrible happens to Hassan that Amir feels guilty over for the rest of their lives. The story follows the boys as they grow into men and Amir and his father flee the country amid the terrible destruction of the invasion and subsequent wars. Although what happens to Hassan is deeply disturbing, Amir find redemption in the end, as their story comes full circle. It's a powerful and compelling movie (and book) that also gives you an inside view into the devastation Afghanistan has endured.
That's it for this week - 3 good movies out of three! Have you seen any good movies lately?

Saturday, December 12, 2009

Quote It Saturday 12/12

We hit a sad milestone today. We went to the tree farm to get our Christmas tree with only three of us along. Jamie was still too badly crashed to get up off the couch. Despite our many cumulative years of dealing with CFS, this was the first time one of us missed this favorite annual tradition. Since we're running out of time, Jamie said it was OK to go without him, but our hearts were all breaking to leave him behind. We took a picture of the tree and sent it to his phone for his approval and brought him some of the yummy kettle corn we buy every year at the tree farm, and he was in good spirits when we returned home, but it was a tough day for all of us.

Quote It Saturday is a feature borrowed from my book blog where I quote from a book that somehow reminds me of life with chronic illness. In honor of Jamie's condition and sacrifice, today's quote is a very direct one about living with CFS from the wonderful memoir, Encounters with the Invisible by Dorothy Wall. If you haven't read this book yet, I highly recommend it. Here, Wall considers how much more difficult it is to give in rather than to fight:

Yield. This is my lesson, too. Stop relying on strength. It feels strange to me, foreign, to bend to an opposing force rather than pushing against it. This is a different kind of determination, one that lets the opposing force pass through and, by leaving you intact rather than shattered, able to gather strength rather than dissipate it. This kind of determination can feel invisible and insubstantial, not as trustworthy or evident as that push-ahead, active, muscled determination. Our culture hasn't taught us about this second kind, has treated it as even less than a poor step-cousin, as something that doesn't exist. Our positive-thinking gurus allow no room for that tentative voice "but maybe Ineed to accept..." In chronic illness, the "myth of a cure," writes psychiatrist Arthur Kleinman, must be replaced by a "pragmatic notion of illness maintenance and disability reduction." Rather than being a sign of defeatism, he says, this shift in attitude can increase feelings of mastery and contribute to an increased sense of well-being that in turn helps healing.
- Encounter with the Invisible by Dorothy Wall

Hope you're all enjoying your weekend.

Friday, December 11, 2009

A Long Week

Is it really Friday? We've had a horizontal week here.

Jamie and Craig and I have all been severely crashed since Monday. There must be a viral trigger behind this for it to have hit all three of us at once. Jamie has been completely flat the whole time - totally exhausted and unable to do anything at all. He's had some congestion but otherwise "just" severe CFS symptoms.

Craig - who rarely crashes for more than a day at a time - barely moved for three days then improved enough to return to school on Thursday, just in time for a field trip to The Franklin Institute (science museum) in Philadelphia, which knocked him back out again. He woke up this morning with all his symptoms flared up again, though he's starting to perk up now. That's his usual pattern - crashed in the morning after exertion, then feeling better by afternoon. He just told me he's bored - a very good sign!

As for me, I've had my ups and downs this week but not a single day alone in a quiet house! I hit bottom last night, after an active morning picking up the house so our cleaners could find the floor. By dinnertime, I had a terrible sore throat and awful aches. Ken brought take-out home for dinner, but I burst into tears at 8 pm when it was time to get the kids to bed - I just felt so bad!

Well, things could certainly be worse. Jamie's best friend had swine flu and now has a bad case of pneumonia. Poor kid has been out of school for two weeks. That's one good thing about this particular year - so many kids have been out sick for extended periods that the teachers are getting used to it. They were all very understanding today when I e-mailed.

Speaking of swine flu, the UK's ME Association has posted guidelines on CFS and swine flu, as well as an update including responses from 38 people with CFS/ME who got the swine flu vaccine - very interesting feedback.

Hope everyone's staying healthy. I have no idea when I'll finally be able to get some Christmas shopping done. We're supposed to get our tree tomorrow, but I don't know if we'll all be up to it.

Tuesday, December 08, 2009

Help CFS Research While You Shop

Are you doing a lot of your holiday shopping online, like I am? Don't forget you can contribute to CFS research while you shop. I've used both of these sites:
  • iGive - the classic. Choose your charity and choose from hundreds of online stores. I have mine set to donate to the CFIDS Association of America. iGive also sends you updates of how much you've earned for your charity.
  • GoodShop - same sort of thing - choose your store and choose your charity. I just tried it out yesterday: shopped at Lands' End and donated to the Whittemore Peterson Institute.
Both sites also feature coupon codes (I got 25% off and free shipping yesterday at Lands' End!); the amount donated varies by store - usually between 1-5% of your purchase.

Happy Shopping!

Monday, December 07, 2009

Movie Monday 12/7

We had a nice quiet weekend at home and enjoyed some good movies. We brought our box of Christmas videos up from the basement and started watching some of our old favorites with the kids. Even though they're 11 and 15 now, they still love this holiday tradition. This weekend, we watched an old Muppets Christmas Special (circa 1996?) that always cracks us up and Frosty the Snowman.

In the evenings, Ken and I watched a couple of good movies:
  • Freedomland with Samuel L. Jackson and Julianne Moore is the story of a woman who shows up in the ER, her hands covered in blood, crying that her car was stolen with her young son inside. Samuel L. Jackson is the detective assigned to the case, which sets off violence and suspicion in the local housing project. It's a dark, somewhat disturbing movie but well-done and suspenseful.
  • Feast of Love with Greg Kinnear and Morgan Freeman was a much more uplifting movie, though it had its sad moments. I mentioned before that I love Morgan Freeman in anything, and this movie is no exception. Kinnear plays a hopeless romantic whose relationships keep crashing and burning, while everyone around him struggles with their own relationships. This funny, sexy, warm movie is about life and love in all its crazy variations.
And right now, the boys and I are watching an oldy but a goody, The Muppet Movie, one of my all-time favorites (and best soundtrack ever)! Both boys are home sick today - I'm hoping it's "just" a crash and not something worse. There are so many nasty bugs going around. Back to Dr. Teeth and the Electric Mayhem...

Saturday, December 05, 2009

Quote It Saturday 12/5

It's time again for Quote It Saturday, a feature borrowed from my book blog, where I share quotes from a book that somehow felt relevant to me, as someone living with chronic illness. I usually choose different quotes to share on my book blog and here, but this week, I'm using the same quotes for both because these were quotes that I liked generally but that also spoke to me specifically as someone with CFS.

I just finished and reviewed Olive Kitteridge this week, a unique Pulitzer Prize-winning book by Elizabeth Strout that tells the story of one character and a small town through thirteen separate but interrelated short stories, each about various people who live in the town. I mentioned in my review that parts of the book were a bit depressing, but these quotes feature a couple of the sections that emphasize joy and optimism instead. Both of these quotes really spoke to me and reflect my own feelings.

The first is about small moments of joy in life, as Olive recalls watching her son's soccer games when he was younger:

There was beauty to that autumn air, and the sweaty young bodies that had mud on their legs, strong young men who would throw themselves forward to have the ball smack against their foreheads; the cheering when a goal was scored, the goalie sinking to his knees. There were days - she could remember this - when Henry would hold her hand as they walked home, middle-aged people, in their prime. Had they known at these moments to be quietly joyful? Most likely not. People mostly did not know enough when they were living life that they were living it. But she had that memory now, of something healthy and pure.

Having spent many, many similar hours on soccer fields watching my own two sons play, I know just what she means. I think Olive is right - that most people don't recognize these small moments of joy as they're happening - but I also think that is one of the few positive outcomes of living with a chronic illness. I do often feel a sense of joy during small moments in my life because I know what it's like to miss those moments or to feel too sick to enjoy them. It's a gift that CFS has given me, this heightened sense of perspective.

And, speaking of gifts, here's another quote from another chapter, where Jane and Bob Houlton, an older married couple, drive through town looking at Christmas lights on all the houses:

And she was happy right now, it was true. Jane Houlton, shifting slightly inside her nice black coat, was thinking that, after all, life was a gift - that one of those things about getting older was knowing that so many moments weren't just moments, they were gifts. And how nice, really, that people should celebrate with such earnestness this time of year. No matter what people's lives might hold (some of these houses they were passing would have to hold some woeful tribulations, Janie knew), still and all, people were compelled to celebrate because they knew somehow, in their different ways, that life was a thing to celebrate.

Here, obviously, we are one of those houses Jane is thinking about, where we have certainly had our share of tribulations. And she's right, isn't she, that no matter what is going on, we take time out at this time of year to celebrate. Even in the midst of serious illness, we still hang decorations, eat special foods, perhaps gather with family or friends if we are able to. It's a nice reminder that, no matter what else is happening in our lives, life is a thing to celebrate.

And now I will return to our own holiday preparations. It is actually snowing here in Delaware, and the boys are thrilled beyond belief! Kids definitely know how to appreciate the small moments of joy in life.

Hope you're enjoying your weekend.

Thursday, December 03, 2009

Dr. Oz Redeems Himself!

I just finished watching the new CFS segment on the Dr. Oz Show, featuring Dr. Donnica Moore. Hurray! They finally got it right (mostly). He started with an in-depth look at the newly discovered XMRV virus - I even learned a few things! Then, he interviewed Dr. Donnica (as she's known) with in-depth questions about CFS symptoms, diagnosis, and treatment which she answered perfectly. Besides being a women's health expert, Dr. Donnica has a son Jamie's age with CFS, so she understands it first-hand.

My one concern with the show was Dr. Oz's parting words (which Dr. Donnica didn't have a chance to respond to). He ended the segment by saying how important it is for people with CFS to exercise, even if they feel like they can't! I was yelling at the TV, "No! No! Let Donnica talk!" Oh, well. It was one minor complaint in an otherwise perfect segment. Dr. Oz even had another guest on, a woman with severe CFS who tested positive for XMRV in the initial study, providing a personal view of what it's like to live with CFS and to have doctors doubt you. Also, Dr. Donnica made sure to explain the difference between CFS and chronic fatigue, which was one of the key problems with his last segment.

All in all, it was great coverage of CFS. Even better, he has posted a 2-page article by Dr. Donnica on his website that provides explicit, accurate details on diagnosing and treating CFS - including proper guidance on MILD exercise.

On an amusing note, the CFS segment was followed by a segment on "kicking the salt habit," of which, of course, people with CFS need LOTS! Let's hope everyone with CFS turned the TV off after the CFS segment!

It looks like Dr. Oz listened to the letters we sent on his last CFS segment! If you'd like to tell him he got it right this time and thank him (positive reinforcement!), you can use this contact form on the Dr. Oz website. I'm going to go do this now.

P.S. Things are looking up here at our house. Jamie went back to school today. I made it to my book group last night AND out to dinner with a good friend. I'm a bit worn out today but not too bad - trying to take it easy and rest.

Wednesday, December 02, 2009

New CFS Segment on Dr. Oz Show Tomorrow

Guess what? All of our letter writing paid off!

Dr. Oz taped a NEW segment on CFS, including the latest research on XMRV, with a well-respected CFS expert, Dr. Donnica Moore, that will air tomorrow, December 3. Dr. Moore has a son - same age as Jamie - with CFS and has previously appeared on two different CFS segments on Good Morning, America. She did a great job both times, so I think this new Dr. Oz segment will be much more accurate than the last one. Check the Dr. Oz website for the time and channel in your local area for tomorrow's show (click on "Local Listings").

Also, if you're in or near western New York, Dr. Bell is giving a public lecture on the XMRV research this Sunday, December 6. Too bad we just left Rochester - I'd like to go to this.

As for us, Jamie is still badly crashed and missed his special trip to Washington, DC, yesterday. He was chosen, along with 24 classmates, out of his class of 300 to attend this special briefing and meeting with our Senators and Representative, so he was pretty disappointed to miss it.

I felt OK both Monday and Tuesday morning, then terrible by dinnertime both days, so I'm taking today OFF. This posting is all my work for today. I'm going to try to rest and recover and finish my book so I can make it to my book group tonight. Too bad Jamie's on the couch...