Monday, December 26, 2011

Movie Monday 12/26

I hope all of you out there are enjoying the holiday season with your family!  We had a very good Christmas - nice and quiet, mostly just the 4 of us, the way we like it!  None of our family lives nearby, so we travel to see them before and after Christmas and enjoy a quiet Christmas Eve and Christmas Day.  This year, my mom and her husband joined us for dinner last night (they had to catch a flight out of Philly this morning), so that was nice, too.

With school ending last week for winter break, we finally had a little bit of time in the evenings to relax with some movies with the kids:
  • We watched the latest Pirates of the Caribbean: On Stranger Tides with the kids.  It was as good as all the others - lots of action, swashbuckling adventure, and plenty of humor.  Johnny Depp was born for this role!
  • We also watched Super 8 with the kids, and we all loved it.  It's set in 1979, about a group of kids who are filming a movie.  By mistake, they capture a horrible accident on film and when they watch it later (after it gets developed - remember those days?), they realize they have the answer to some questions about very strange things going on in their town.  No one else knows what they know, so it's up to them to save the entire town.  Ken said it was Goonies meets the aliens, an apt description!  The sci fi action and suspense are all very good, but the nostalgia is lots of fun, too.
  • Today, the kids watched Harry Potter: The Deathly Hallows, Part 2, one of their Christmas gifts from us (we got them the last 4 DVDs they needed to complete their Harry Potter collection).
How about you?  Have you watched any good movies lately?

Here's an "after" picture of our living room after opening gifts - a joyful mess!

Tuesday, December 20, 2011

Hope for the Next Generation

Sorry things have been quiet around here lately - just very busy with the holiday season.  We spent this weekend with my mom, her husband, and my sister and her family, with our traditional early Christmas celebration (plus two birthday celebrations).  It was lots of fun and great to see everyone.  I felt so much better than I did last year at this time - I was really just filled with joy at being able to enjoy my family and help a bit with meals.

Mostly, I had a blast playing with my niece and nephew (that's a photo of my mom with her four grandkids).  My nephew loved playing with the race car set we got him, and I had fun playing games with my niece and the rest of my family.  My 5-year old nephew wanted to learn to play jacks (I have retained my elementary school skills!), but he didn't really have the dexterity for it, so he came up with a new way to play - he threw the ball up and scooped up as many jacks as he could, while it was up to me to catch the ball!

At one point, I was out on the playground/beach area (my mom and her husband live in a resort community) with my mom and my niece, and my niece (who is 9) asked me about the heart rate monitor I was wearing.  That sparked a conversation about my illness that left me feeling really good.  I prefer to be very open and upfront about my illness, and I believe it is really important to be honest with kids (at a level they can understand, of course).  Kids can sense when something is wrong, and NOT talking about it just makes them feel more worried and scared. 

My sister, on the other hand, is one of the only people left in my family who doesn't really acknowledge my illness.  I can remember her asking me once in the past 10 years how I was doing - she just prefers to pretend everything is fine.  Once when my nephew asked about all the pills the kids and I were taking, my sister jumped in and said, "Those are vitamins."  I thought that was a rather dangerous thing to tell a little kid, that it's OK to take a dozen vitamins at once!  So, I explained that we had an illness, and our doctor gave us medicine to help us feel better.  I emphasized that we only take medicines that our doctors give us.

So, this weekend, when my niece asked me about my heart rate monitor, I said, "Well, you know that I have an illness, right?  Well, watching my heart rate helps me to keep from getting sicker.  If I keep it below a certain point, then I feel better.  So, this heart rate monitor helps me to be able to play more with you without worrying about it making me sick!" 

She was glad to hear that and told me that she'd learned about Lou Gehrig's disease in school.  So , I reassured her that my illness doesn't usually kill people, and that medicines help me feel better, and we talked about the differences between Lou Gehrig's disease and my illness.  She was fascinated by the heart rate monitor.  We had a great time playing on the playground equipment and taking a short walk together.

I think it's so important to talk to kids about our illnesses.  They're the next generation!  I usually reassure kids about the two things they are likely to worry about most: that this isn't the kind of illness you die from (I know that technically, some have died from CFS but mine is fairly well-controlled) and that it's not the kind of illness you can catch from me (again, I know that technically we don't yet understand the infectious component of CFS but we do know it is not passed along by casual contact - otherwise, a lot more people would have CFS). Maybe with some education and honesty, there will be less ignorance and more understanding in the coming decades.  My sweet niece and nephew (and my own kids and their friends) give me hope!

Tuesday, December 13, 2011

Public Testimony From Fall CFSAC Meeting

The government has posted links to all of the public testimony that was delivered at the recent meeting of the CFS Advisory Committee (CFSAC).  I haven't had a chance to read them all yet, other than those of a few close friends of mine, but what I have read so far has been moving, articulate, and heartfelt.  You can read them yourself at this link - just scroll down to the public testimony section.  You can also watch videos of the meeting or view slides of each of the presentations at that same link.  If you are particularly interested in issues related to pediatric ME/CFS, be sure to check out the testimonies of Alexander Lopez-Majano, Denise Lopez-Majano, and Joan Militello - they are all a part of our local group for families of kids and teens with ME/CFS.

As I mentioned here before, I also submitted testimony to CFSAC but did not get a speaking spot.  You can read my testimony at this blog post.

A huge thank you to all of the patients and family members who attended this meeting and gave testimony for all of us who were unable to.

Monday, December 12, 2011

Movie Monday 12/12

Whew - busy time of year.  Not much time for relaxing with movies.  We spent our weekend filling out scholarship applications, doing make-up work (Jamie - he missed a another week of school),  shopping, and finally getting our Christmas tree and decorating it!  But we did watch a couple of holiday-themed comedies on Saturday evening:
  • I had a few new movies from the library, but the boys voted to watch an old favorite, Planes, Trains and Automobiles.  It was the first time Craig had seen it.  We all laughed hysterically, of course!  The more times you see it, the harder you laugh because you anticipate all the good scenes and lines.  "It may not be pretty, Officer, but it gets me where I want to go." Afterward, Jamie said, "Laughter really is the best medicine!"  Must be because he felt much better on Sunday and went back to school today.
  • After the kids went to sleep, Ken and I opted for another light holiday flick, Four Christmases, starring Reese Witherspoon and Vince Vaughn.  It's about a couple who have avoided their families for years and end up having to visit all four parents (both of their parents are divorced) in one day - lots of dysfunctional families and sibling angst, along with an all-star cast.  It was about what you'd expect - light and fun, an enjoyable comedy with a heart.
  • Since all of our favorite TV shows are on hiatus, Ken and I have been watching a new series on DVD this week, Treme.  It's set in New Orleans after Hurricane Katrina, and I'd heard excellent reviews of it.  We are loving it so far!  We used to live in New Orleans and love the music and the visuals in the show, plus the acting and the storylines are good, too.  We found ourselves humming its theme song all day yesterday!  Makes me miss my favorite city.
Have you seen any good movies lately?

Wednesday, December 07, 2011

Summary of IACFS Meeting

The International Association for CFS/ME (IACFS) held its biennial meeting in Ottawa this fall.  Dozens of top CFS researchers reported on their scientific findings.  I wish I could attend something like this, but even the 4-hour NJ CFS Conference wiped me out last year.  So, I was thrilled to find this excellent summary of the IACFS Conference, written by the renowned Dr. Lapp.  He summarizes all of the key research studies in easy-to-understand language.  I highly recommend you take 10 minutes to read this - there is just so much good information here.  And it is all very encouraging - so much excellent scientific research going on in so many critical areas!

Monday, December 05, 2011

Movie Monday 12/5

It's been a few weeks since I've written a Movie Monday post because we've been so busy we haven't had time for movies!  We often watch a TV show on DVD before bed, but we rarely have time for a full movie.

As a result, I've been craving a movie lately, so I grabbed a couple off the shelf at the library last week.  We only found time to watch one (because OSU was playing against their arch rival, OU, on Saturday night, so I lost Ken!)...fortunately, it was a good one:
  • With Craig away at a sleepover, Ken, Jamie, and I watched The Sentinel, an action-packed thriller with an intriguing plot about the Secret Service (the service that protects the President).  For the first time in history, there is a traitor within the Secret Service and evidence of a plot to assassinate the President.  No one knows who to trust.  Michael Douglas plays a renowned agent who saved President Reagan from assassination, but when he fails his polygraph test, he becomes the main suspect and is taken off the service.  His main accuser is played by Keifer Sutherland who used to be his best friend.  Douglas' character is forced to go on the run until he can prove himself innocent.  In supporting roles, Eva Longoria plays a rookie agent, and Kim Basinger plays the first lady. It's a fast-paced, exciting thriller that keeps you guessing.  We all enjoyed it.
I'm hoping we can find a little time for some holiday movies in the next few weeks.  Of course, I will have to have my annual viewing of It's a Wonderful Life and cry!  Of the more recent holiday films, we really like The Holiday and Love, Actually.

I'm open to suggestions - what are some of your favorite holiday movies? 

Thursday, December 01, 2011

Support ME/CFS With Your Holiday Shopping!

Just a reminder (because I always forget!)...

While you are doing your holiday shopping online from your couch or bed (as I have been doing this week), here are some easy ways to help support ME/CFS research:
  • 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.  Between the two sites, you can find just about every online store you can think of.
Both sites also feature coupon codes (I got 50% off and free shipping yesterday at Lands' End!); the amount donated varies by store - usually between 1-5% of your purchase.

So, happy shopping and happy holidays!!