Quote It Saturday 1/23

Ah, Saturday. We're all alone at home (well-except for the four friends the boys have over!) with no major events. We finally managed to take down our Christmas lights, decorations, and tree today. Now all that's left are the pine needles - I don't think there was a single needle left on the tree!

Time for Quote It Saturday. Today, I chose a couple of old favorite quotes from Mr. Rogers. Yes, THAT Mr. Rogers, of the sneakers and zip-up cardigan. I loved his TV show when I was a kid, and so did Craig, but today's quotes are from a book he wrote for grown-ups, The World According to Mr. Rogers, which I read years ago and found surprisingly insightful. I thought these two quotes reflected the internal struggles I've been going through recently:

One of the strongest things we have to wrestle with in our lives is the significance of the longing for perfection in ourselves and in the people bound to us by friendship or parenthood or childhood.

That is certainly one of the things I struggle with daily! Perfection is particularly damaging when you're living with the limitations and confines of chronic illness.

How great it is when we come to know that times of disappointment can be followed by times of fulfillment; that sorrow can be followed by joy; that guilt over falling short of our ideals can be replaced by pride in doing all that we can; and that anger can be channeled into creative achievements...and into dreams that we can make come true!

- The World According to Mr. Rogers by Fred Rogers

Just what I needed to hear this week! Wasn't he a great guy?

Hope you're enjoying the weekend. I should probably go help with the needle clean-up...

Oh, and if you like to read, check out my list of Top Ten Books I Read in 2009.

"Tomorrow, tomorrow, we'll start the day tomorrow with a song or two. Till then I hope you're feeling happy. Till then I hope you're feeling snappy..." (too bad you can't hear me singing)

In Limbo

How did it get to be Friday already? This week wasn't the quiet, restful week I had imagined it would be, in spite of the fact that we had no major events, celebrations, or visitors. Jamie came home at 11:30 am each day (he had mid-term exams all week), and Craig was home sick Tuesday and I had to go pick him up this morning. So, not much quiet time.

Craig had a severe crash last night. He came home from school feeling terrible, said his OI was bad all day and that a friend told him he looked pale (12-year old boys don't normally notice things like that!). Instead of running outside to play like he usually does, he just crashed onto the couch until he went to bed at 7:30 pm. He had a sore throat, congestion, aches, 101 degree fever, and was totally wiped out. He slept for a solid 12 hours and woke up feeling pretty good, so I took him to school. The nurse called a few hours later, and I went back to pick him up. Now he's feeling good again and is outside playing (it's Friday - why reign him in?). Hard to tell what's going on - a brief crash triggered by a virus maybe or even the start of a cold (Craig's immune system is less abnormal than mine and Jamie's, so he does occasionally get a cold).

I've been sort of in limbo all week, in part because I haven't had much time to myself and in part because I haven't felt well. I haven't been severely crashed - not like last week when I had to spend a day in bed - but I haven't felt good either. I never had a day when I was well enough to get groceries, so I guess Ken will have to do that on Saturday morning (something he hates to do). I managed to cobble together another meal plan for tonight with whatever scraps are left in the house!

Mentally, I've felt in limbo, too. Despite my proclamation that this past Monday was my January 1, I still haven't finished my traditional year-end review and goals for the new year. I did think about it enough that I came to a conclusion: I have to give something up. I'm sick of feeling overwhelmed and not making any progress with work (freelance writing), and I know it's not good for my health. I have too many balls in the air. I've spent a lot of time thinking about this and have decided what I need to do. This is very difficult for me because I tend to be overly ambitious and want to be involved in everything at once. With CFS now, I just can't. I'll tell you more about it next week - I need to get some things in place first. (don't worry - I'm not giving up my CFS blog - it's my lifeline!!)

So, while I'm glad it's the weekend, I'm feeling like this was sort of a lost week. I wasn't very productive. On the bright side, we have absolutely nothing planned for the weekend, so maybe we'll finally have a chance to take down our Christmas tree! Definitely a good weekend for some movies, too. Happy Friday!

The End of the Marathon

Sorry, no Movie Monday today - we didn't have any time for movies last week!

We have finally reached the end of our holiday/family marathon! We had two sets of grandparents visiting last week, Craig's 12th birthday, and last night, a sleep-over party with 8 wild boys! I made a quadruple batch of pancakes this morning (12-year old boys eat a LOT!) and by noon, all the boys had been picked up by their parents. Craig was up past 2 am and is exhausted, though he did manage a 2-hour nap, so I hope he recovers in time for school tomorrow. Jamie wisely left the sleep-over at 11 pm and went up to his own bed - he has mid-term exams all this week.

Now it's just the three of us, resting and watching Harry Potter and the Half Blood Prince (one of Craig's birthday presents). I know Ken will also feel hugely relieved when he gets home from work today.

Now we have weeks with nothing unusual on the calendar, and the four of us can return for awhile to our boring, wonderful routines. We really need this period of quiet recuperation. I hope to gradually - very gradually - regain some of the stamina I've lost. Today is my January 1, the start of my new year, though I'm not thinking yet about goals or anything like that. Just rest.

Oh, I also didn't have time to post a quote here on Saturday, though I did post a couple of quotes on my book blog that I think relate well to living with chronic illness, or any major life changes.

Happy New Year!

Great Program on Time Management

I just listened to a great program on time management, procrastination, and over-committing on Radio Times on NPR. Oh, my gosh, this is so me! I've always had a problem with trying to do too much, but it's become even more frustrating now that my productive time is so limited. More on all of this next week, as I officially start my new year and attempt to set some REASONABLE goals, for a change. Meanwhile, if you're interested, you can listen to a podcast of the show at the link.

Our next set of house guests comes in tonight. I managed a short trip to the grocery store (buying groceries would be so much less exerting if I didn't need to get 20 bottles of Gatorade every week!), but I took my mom up on her offer to bring dinner tonight.

Have a great weekend!

XMRV Testing for CFS

More updates on XMRV and CFS:

• WPI announced today that a new, better diagnostic test for XMRV is now available. Read the press release (it's a pdf file, so click on the link under Breaking News) or visit the VIP Diagnostics laboratory site that is administering the test (though the website was down today).
• Newspaper article about WPI's response to the UK study.
• An online discussion forum on XMRV testing in the UK. At least one person on the forum (in the UK) tested positive for XMRV; others are waiting for their test results.
• Whittemore Peterson Institute Reseacrh Questionnaire. Fill this out if you're interested in possibly participating in future WPI research studies on CFS and XMRV. Right now, they're just collecting data, as I understand it. I believe that anyone, anywhere in the world, can fill out the form. I haven't gotten around to doing this yet for the boys and I, but I plan to.

I'm doing better today but tried hard to take it easy and slow. I had a quiet day (two in a row!). Thanks for all your support and encouragement!

Living on the Edge

I realized this morning that I've been living on the edge of a crash for weeks now, and it takes very little to push me over that edge. I've been going back and forth between OK-but-not-great and totally crashed with very few good days. Life has just been too hectic.

After my total wipe out on Monday, when I had to spend the whole day in bed, I had a much better day yesterday. I went out with my Dad and his wife to do a little shopping (Craig's birthday is today) and cooked dinner, and it seems that was enough to push me over the edge again. I'm not as bad as I was on Monday, but I am once again very achy, with my heart racing from OI. Our visitors left this morning, so I piled the coffee table with all that I need for the day and am camped out here on the couch with plans to do nothing but rest all day.

We're planning to go out for dinner tonight for Craig's birthday. I have a 2 1/2 day break, then my mom and her husband come in for the weekend! Ken will handle the first part of Craig's party on Sunday (he's taking our boys and Craig's friends to a local ski place for snow tubing), then we'll have 8 boys spending the night, and I'll be on my own Monday morning when Ken goes to work (no school Monday). THEN...there is nothing else major on the calendar until February.

I'm getting frustrated by my extremely low stamina right now, but I think it's just a matter of not allowing my body to fully recover from each crash. I guess I need more than a single day of rest to get back to "normal" for me. I had envisioned a nice fresh start to a new year, with a chance to clear off my desk, set some new goals, and dive back into some writing projects, but instead I've just been in survival mode, barely managing to tread water (I went under on Monday!), with everything piling up, both literally and figuratively.

Hopefully, things will improve and get back to normal next week, whatever normal means! In the meantime, I will try my best to rest as much as I can.

Movie Monday 1/11

Ugh...feeling really terrible today, a new low. I was a little better yesterday, but I guess I spent too much time on my feet cooking (though dinner and dessert were fantastic, if I do say so myself). My Dad and his wife are visiting, and I had to spend most of the day in bed. Fortunately, they're very easy-going and understanding and were content to spend the day reading.

Jamie is much better. All that rest this weekend paid off. He went to school today and is almost caught up on make-up work from last month. Craig did go snowboarding and had a blast! He was very sore this morning, but had no trouble getting up and going to school.

Anyway, it's Monday, so the topic is movies! Not a lot of time for movies this past week. We watched one over the course of two weeknights (can't stay up late enough to watch a complete movie on a school night!) and one on Saturday night. I was too sick to stay up Friday night. So, two enjoyable movies:

• In the Valley of Elah. An excellent movie starring Tommy Lee Jones as the father of a young man who recently returned from Iraq. He gets a call when his son goes AWOL shortly after returning to the US. He heads to the base in North Carolina to look for him. It's a suspenseful mystery, but it's also about the horrors of war, this war in particular.
• Bourne Ultimatum. This one was for pure entertainment. Ken and I both read all the Bourne books years ago and enjoy the movie adaptations. We - once again - started this movie and wondered if we'd already seen it. I think we can be forgiven for this one, though, since there've been three of these movies! We hadn't seen it before, and it was good, action-packed, high-suspense fun, just like the first two.

Have you seen any good movies lately?

Quote It Saturday 1/9

I've been severely crashed for the past two days, and it's getting me down. I knew I was overdoing it earlier this week, with driving Ken to Philly for his eye appointment, cleaning, grocery shopping, cooking, and having friends over for dinner. Even so, I didn't expect to feel this bad. Will I ever learn? Poor Jamie is crashed, too, after his science fair yesterday. He and Craig are supposed to sleep over at a friend's house tonight, then go snowboarding all day tomorrow, but it looks like Jamie won't be able to go.

On a happier note, now that the holidays are over, I'm trying to get back into my normal routine, including Quote It Saturday, a weekly feature borrowed from my book blog.

Today, I have several quotes from a wonderful novel I listened to on audio this fall, The Crowning Glory of Calla Lily Ponder by Rebecca Wells (author of the Ya-Ya Sisterhood books). It's the life story of Calla Lily Ponder, a girl growing up in rural Louisiana in the tiny town of La Luna. It's a warm, sweet novel that made me laugh and cry. If you're interested in hearing more about it, check out my review.

Here are a few quotes that really spoke to me:

Sadness can find you anywhere, anytime, so you better have fun when you can.

She'd [her mother] say, "Okay, Calla. When you are most afraid, find things to be grateful for."

...A husband is enough. This house is enough. This life is enough. I do not want what I do not have.

Well, pretend this is your to-do list for the afternoon: (1) Breathe in. (2) Breathe out. (1) Breathe in. (2) Breathe out. Count up to a hundred that way and see what happens.

- The Crowning Glory of Calla Lily Ponder by Rebecca Wells

I tried that last one out this afternoon and had a good, solid nap! Hope you're all having a nice, restful weekend and staying warm!

XMRV in CFS Update

Busy, busy day today - our cleaners came this morning (which means a frantic picking-up so they can find the floors to clean!), grocery shopping, and friends coming over for dinner. Whew. I'm lying down now, trying to rest up for dinner, but I just couldn't wait another day to post some XMRV updates because CFS is in the news headlines again, only this time, they're very misleading.

You may have already seen the headlines trumpeting, "XMRV virus not found in UK CFS patients." I've seen this splashed all over the internet the last few days. Fortunately, both the Whittemore Peterson Institute (WPI) that did the original XMRV research and the CFIDS Association (CAA) and were quick to send out press releases explaining this new study for us lay-people.

What CAA and WPI both say is that the UK study is flawed, that it did not use the same selection criteria for patients as the WPI/Cleveland Clinic/National Cancer Institute study, that they did not use the same laboratory methods to test for XMRV, and that they rushed to publish their results without any review, so the results are basically meaningless.

One of the main researchers of the UK study was Simon Wesseley (plus two of his close colleagues) who is well-known for proclaiming that CFS is psychiatric, that it can be cured with Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET), and for choosing study participants with revised CFS criteria in order to prove his own theories. 'Nuff said.

You can read for yourself the statements from the CFIDS Association and Whittemore Peterson Institute (this one is a pdf file, so click on the press release link in the right column under Breaking News). Both are very enlightening, though they can't stop the mainstream media from splashing the misleading headlines all over the place. One UK news organization posted their daily reader quiz today as "Do you think ME is a real illness?" I'm sure it's not the last time we'll see tabloid-like news on CFS. Fortunately, letters of protest are flooding out almost as quickly as the headlines, though certainly some damage has already been done, particularly in the UK.

On a brighter note, the XMRV study (the original one) made several best of 2010 lists:

• MedPage included the XMRV CFS study as one of its Next Best Things in medicine
• Discover Magazine named the study #55 of its 100 Top Stories of 2009

Also, WPI says that several drug companies have already approached them regarding anti-retroviral drugs to use against XMRV in CFS (hopefully, there is something already on the market that will work).

It's easy to let this latest PR setback get you down, but I'm keeping faith that good science will prevail, and 2010 will bring more good news (maybe even treatments?) for CFS!

THANK YOU!!

I finally got through my hundreds of unread e-mails from the past few weeks and saw a notice that my blog won an award in the People's Health Blogger Awards at Wellsphere for Best Blog in the CFS category! A friend (thanks, Jo!) had mentioned it to me at Christmastime, but it completely slipped my mind during the hectic holidays.

I feel very honored that my blog was chosen for this award, and I'd like to thank all of you who voted for me in the competition. If you scroll down a bit, you'll see my new award badge in the left column.

When I started this blog 4 years ago, I didn't know what to expect. I wanted to write about our experiences with CFS (at the time, only Jamie and I were diagnosed), and I hoped that someone would read it. I very much wanted to connect with other people with CFS, as I didn't know anyone else locally with it, but I wasn't sure how to find other people. I was stunned - and pleased - when someone left a comment on my first blog entry!

Now, almost four years later, this blog has surpassed all of my expectations. I now get about 40-50 visitors a day and have made so many new friends! The community of CFS bloggers and visitors has become like a support group for me, and I have certainly gained as much (or more) than I've given here.

Thank you for your support, encouragement, and friendship. I no longer feel alone!

Movie Monday 1/4

I'm already feeling overwhelmed, and it's only January 4! So much to do and catch up on after a hectic holiday season and a crash-filled fall. At least I finally got my 2010 calendar set up tonight. Our holiday season actually extends well into January, with Craig's birthday on January 13 and several sets of houseguests in the coming weeks. Maybe in mid-January I can actually start working!

Despite the chaos of the past couple of weeks, we did squeeze in a few good movies:

• It's a Wonderful Life. An annual tradition! We watched it Christmas Eve and Christmas night, and I cried my eyes out at the end, just like I do every year.
• Come Early Morning. We enjoyed this drama starring Ashley Judd as a woman in rural Arkansas with a bad habit of waking up hung-over in strange beds. She has lots of issues but meets a new (much more worthy) man who helps her begin to change her life for the better.
• Click. We watched this one with the kids on New Year's Eve in Oklahoma (it was their first year staying up until midnight - well, midnight Eastern time!). I expected typical Adam Sandler silliness - and there was some of that, including fart and boob jokes - but it was also surprisingly warm and touching. I actually cried at the end, and, instead of teasing me like they usually do, both Jamie and Craig admitted that they were close to tears, too! It's the story of a harried father who gets a universal remote control that actually works in real life to pause, fast-forward, mute, etc.
  
• Changeling. A powerful movie based on an incredible true story. A single mother in 1928 Los Angeles comes home from work to find her son is missing. Months later, the LAPD return a boy to her, amid great media attention, but she insists he is not her son. This story and what follows are all the more horrifying because it really happened. A gripping story of a mother's love and determination.
• Charlie Wilson's War. Another excellent movie based on a true story, starring Tom Hanks, Julia Roberts, and Phillip Seymour Hoffman. Hanks plays the Texas Congressman Charlie Wilson, who single-handedly launched a covert effort to help Afghanistan rebels fight against the Russian Army that invaded their country. It's an amazing story and very well-done - absolutely fascinating.

Have you seen any good movies lately?

Back Home

I hope everyone had a nice holiday season. Our holidays were good but filled with unexpected challenges. I'm very glad to be back home and am looking forward to getting back to my own routines (though the next couple of weeks will still be very un-routine).

We were enjoying a nice Christmas Eve - dinner out with the kids, candlelight church service, and a neighbor's open house - when my husband, Ken, mentioned that he was seeing spots in his left eye. I didn't think it was anything serious, but it got worse on Christmas Day (not an ideal time to seek medical assistance!). By the next morning, he was really scared, and, after looking up his symptoms online, I was, too. WebMD basically said, "Seek medical care immediately." We finally found an ophthalmologist who was open on the Saturday after Christmas, and I drove him over to the office.

The doctor examined Ken's eye and said he had a tear in his retina and that he needed surgery immediately. He made some calls for us, and at 7 am Sunday morning, I drove Ken to Philadelphia for emergency laser eye surgery. The eye institute was closed - the surgeon, a resident, and Ken and I were the only ones there! Fortunately, the doctor was able to repair the tear with a laser (conventional surgery would have been much more risky), and he gave us the OK to keep our travel reservations for the next morning. Besides being scared about Ken's eye, we were terrified that we'd have to cancel our trip and would lose the very large sum of money we'd paid for the tickets and couldn't really afford in the first place. I told Ken I never would have guessed that, of the four of us, he might be the reason we'd have to cancel a trip! Thankfully, it all worked out, though Ken's vision is still impaired because of blood in the eye; the doctor said it could take weeks to clear completely.

We left for Oklahoma the next morning to see Ken's parents, completely skipping the quiet, relaxing days we'd anticipated at home! Our flights went OK, but our bags didn't arrive until 24 hours later (by which time we were all desperate for our toothbrushes and clean clothes). Our visit was difficult. Ken's mom, who has advanced Parkinson's disease and is in a nursing home, was much worse than when we visited this summer. Her limbs are stiff and almost completely immobile now, and it's almost impossible to understand her when she talks (both common symptoms of Parkinson's). His dad has severe spinal stenosis and is having trouble even walking up the driveway, though he still spends every single day at the nursing home.

It's very difficult to live so far away and only be able to visit every six months. I keep feeling like we should DO something, but moving us out there or somehow moving them here both seem impossible. It was very hard to leave them.

Despite all these extra challenges, we did have a nice Christmas and New Year's. On New Year's Eve (a quiet tradition on our Oklahoma visits, where we celebrate the new year at 6 pm before Ken's mom goes back to the nursing home for the night), I was suddenly struck, as I often am, by just how wonderful our two sons are. They're both incredibly kind, caring, and lots of fun! I just feel so fortunate to have them in my life (and my husband, too!). People always say when things go wrong, "at least you have your health," but even without good health, we still have each other. There is nothing more important in life than good, loving relationships with people you care about.

Here's to a happy and healthy New Year with the people you love!

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!!

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?

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...

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?

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.

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.

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!

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...

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.

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.

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...

The Holiday Marathon

Whew, what a weekend. We drove to Rochester, NY, on Wednesday to spend the Thanksgiving holiday with my extended family. And I do mean extended - my mother's family is there, my father's family, my mother's husband's family - lots of aunts, uncles, cousins, etc. So, our visits there are always packed full. I have backed off a bit on the agenda since getting CFS. We used to go to 3 different houses a day! It's still hectic, though, with lots of large gatherings. In fact, I have lots of friends from both high school and college in the area that I never have time to see because we have so many family members to visit.

We had a good time and enjoyed seeing everyone, but it was exhausting. I thought I was doing OK this morning, until about 10 am when I suddenly felt so tired! I'm not really badly crashed, just very, very tired.

At one point this weekend, I said to Ken, "I know I haven't done anything physical all weekend, but just sitting in a big group of people talking totally wipes me out." He said, "It wears ME out, and I don't have CFS!" The kids had a blast playing with all their different groups of cousins all week, but that was a LOT of physical activity for them. Craig was fine this morning, but Jamie is exhausted and said he woke up about 10 times last night - and that's with his sleep medications. I hope he rebounds quickly - he has an all-day trip to Washington, DC, tomorrow morning, leaving school at 5 am!

And now, tomorrow is December already! Christmas is only three and a half weeks away. Yikes! I haven't even begun to think about Christmas shopping. So much to do in such a short time. How does everyone else manage the holiday marathon?

Movie Monday 11/23

I had a weekend of highs and lows - the high of going hiking with my family on Saturday...and the low of thinking I had managed it OK, then crashing on Sunday afternoon. At least, I suspect it's from the hike, but who knows? Still in bad shape today and feeling a little down (and very worried about the rest of our week, traveling to see family for the holiday weekend). I have been looking forward to Movie Monday, though!

We watched two movies this weekend:

• Million Dollar Baby I put off seeing this Academy award-winning movie for quite a while, in spite of its glowing reviews, because I really detest boxing, but I saw it on the shelf at the library Friday and decided to give it a try. I still think that boxing is brutal and cruel and shouldn't be considered a sport (I covered my eyes for most of the fighting scenes!), but there is no question that this is an excellent film. The story itself is both triumphant and sad, and the acting is superb. Hilary Swank is great in the title role, Clint Eastwood plays a perfect gruff old man, and I love Morgan Freeman in every role he plays! I have to warn you, though, that this is a tough movie to watch and not just because of the boxing scenes. So, you should probably stay away from this one if you don't like sad movies, but, if you feel as I do - that any movie(or book) that can make you feel something is worth seeing (or reading) - then you should give it a try.
• Snow Falling on Cedars OK, this is a funny one - not the movie but the story of us watching it! I saw it at the library and thought, "Oh, I've always wanted to see this." So, I put the DVD in that evening and 5 minutes into it, Ken says, "Haven't we seen this before?" I told him I know I didn't see it. Another 10 minutes and he says, "I'm sure we've seen this before," and I keep insisting we haven't. At some point midway through, we finally decide we did see it. I asked Ken, "Do you remember how it ends?" Nope, me either. So, we watched it again! As for the movie, it's an excellent one, a mystery that ties into the prejudices against Japanese-Americans after World War II. Very well-done. As for the two of us, well, let's just say this isn't an isolated incident! Ken said to me, "At least you have CFIDS! What's my excuse??"

Hope you had a fun weekend and enjoyed some good movies, too!

Quote It Saturday 11/21

I've borrowed a weekly feature from my book blog, where I share quotes from favorite books that spoke to me, as someone living with chronic illness.

This week's three quotes are from the novel The Tenth Circle by one of my favorite novelists, Jodi Picoult. The Tenth Circle uses parallels with Dante's The Inferno to help tell the story of a teen girl who encounters a terrible situation. These quotes are from the girl's mother, and her thoughts on dealing with her challenges and sorrow are remarkably appropriate to those of us living with chronic illness:

God, according to Dante, was all about motion and energy, so the ultimate punishment for Lucifer is to not be able to move at all. At the very bottom of hell, there's no fire, no brimstone, just the utter inability to take action.

...That weekend, Laura learned that there are no cosmic referees. Time-outs do not get called, not even when your world has taken a blow that renders you senseless. The dishwasher still needs to be emptied and the hamper overflows with dirty clothes and the high school buddy you haven't spoken to in six months calls to catch up, not realizing that you cannot tell her what's been going on in your life without breaking down.

...It was a catch-22: If you didn't put the trauma behind you, you couldn't move on. But if you did put the trauma behind you, you willingly gave up your claim to the person you were before it happened.

- The Tenth Circle by Jodi Picoult

She really hits the mark, doesn't she? I could relate strongly to all three of these quotes.

Hope you're all having a great weekend!

The Cost of an Onion

I read something yesterday that affected me profoundly. It was a post originally written in the Forums at Phoenix Rising. I read it at Cort Johnson's blog (the founder of Phoenix Rising). You should follow this link and read it for yourself because it's beautifully written, but essentially, the writer talks about how 31-day months, like October, are extra-hard when you're on disability because it's so difficult to figure out how to feed yourself for an extra day. She writes of wanting to buy a small onion so she could make a stew and not being able to afford it.

Lately, I have been constantly worried about our finances and how to pay our ever-rising medical costs. Ken and I talk about it all the time. In the midst of worrying about our own problems, though, I see now that I have lost my sense of perspective. I may not be able to earn much these days, but Ken has a good-paying job with excellent (though expensive!) health insurance. We live in a very nice home in a great neighborhood. Although I am careful at the grocery store - comparing prices, buying the store brand, using coupons - I have never, ever worried about any of us going hungry. We pretty much eat what we want to eat (I hear Craig opening the fridge again now!). I haven't been seeing the bigger picture. We are very, very fortunate.

Here's a cool website recommended by a CFS friend, Global Rich List. Go to the site, plug in your annual income, and see how your family compares to the rest of the world. It's pretty eye-opening.

So, while we're worried about paying for plane fare to see Ken's parents, Craig's braces, and our increasing health insurance costs next year, there are plenty of other people with CFS worried about how to pay for a single onion. They're not worried about paying for expensive medicines and specialists because they can't afford any medical care. Maybe some of you reading this are in that position.

I need to remember this when I think things are tough and try to keep a sense of perspective, as well as helping other whenever I can.

In this season of Thanksgiving, I need to remember all that we have to be grateful for.

Movie Monday 11/16

I decided to start a new weekly feature: Movie Mondays! Ken and I almost always watch DVDs on Friday and Saturday nights, and I thought it might be fun to share my thoughts on the movies we've watched. I'd love to hear your thoughts and recommendations, too!

We really enjoy our movie nights on the weekends. Not only is it far cheaper (free, most of the time, since I borrow DVDs from the library) than going to the theater, but I can lie on the couch - and Ken in his beloved recliner - sip my tea, and just press pause whenever I need a bathroom break or a snack! Plus, it's something we can enjoy together no matter how sick I am.

So, this weekend, we watched:

• Mamma Mia! I requested the movie version as soon as I got home from seeing the live show on Broadway because I enjoyed it so much. Of course, the DVD couldn't quite compare with seeing it live, but it was still a lot of fun. Ken and I thought the lead roles were sort of odd choices - Meryl Streep and Pierce Brosnan for singing roles - but it was enjoyable. I might even consider buying this one (a rarity for me) because I think it would be a good pick-me-up/feel-good movie to watch when I'm feeling bad. You just can't help but sing along and smile!
• Slumdog Millionaire We just might be the last people in the universe to see this movie, but it was well worth the wait. Wow. What an amazing and powerful story of an orphan from the slums becoming an overnight millionaire and national hero. The conditions he and his brother and friend lived in and the things they endured as children were sometimes hard to watch, but it is the ultimate rags to riches story. The scenes of the slums of Mumbai at the beginning reminded me of a wonderful novel I read, The Space Between Us, about two women in India, a middle-class woman and her servant.

Have you seen any good movies lately?

Quote It Saturday 11/14

I've adopted a weekly feature from my book blog for my CFS blog, featuring book quotes that speak to our challenges in living with chronic illness.

Today's quote is from Christopher Reeve's amazing memoir, Still Me. I'm not normally into celebrity memoirs, but this one is unique. Reeve's strength and courage in the face of his complete paralysis is inspiring and awesome. I also highly recommend his follow-up memoir, Nothing Is Impossible. The things that he managed to accomplish while unable to move were incredible. Of course, vast wealth does help, but his positive attitude and personal strength in the face of such huge physical challenges is still awe-inspiring, as shown here:

If someone were to ask me what is the most difficult lesson I've learned from all this, I'm very clear about it: I know I have to give when sometimes I really want to take. I've realized instinctively that it's part of my job as a father now not to cause Will to worry about me. If I were to give in to self-pity or express my anger in front of him, it would place an unfair burden on this carefree five-year old. If I were to turn inward and spend my time mourning the past, I couldn't be as close to Matthew and Alexandria [his kids from his first marriage]...And what kind of life would it be for Dana if I let myself go and became a depressed hulk in a wheelchair? All of this takes effort on my part, because it's still very difficult to accept the turn my life has taken...
- Still Me, Christopher Reeve

See what I mean about his strength?

Hope you're all having a restful and enjoyable weekend!