Monday, December 31, 2012

Movie Monday 12/31

Happy New Year's Eve!

Sorry I haven't been blogging much, but the holiday season has been hectic and exhausting. So, I will catch up on a few missed Movie Mondays today. Here's what we've been watching in between holiday doings lately:

Before all the holiday craziness began, Ken and I watched Vicky Christina Barcelona, a Woody Allen movie set in (yes, you guessed it) Barcelona. Two best friends, Vicky (played by Rebecca Hall) and Christina (played by Scarlett Johansson), go to Barcelona so that Vicky can do some research for her post-graduate degree. They meet a handsome, sensual Spaniard named Juan Antonio (played by Javier Bardem) who tries to seduce them. Vicky is engaged, but Christina quickly becomes involved with Juan Antonio. A strange love triangle ensues when his passionate but unstable ex-wife Maria Elena (played by Penelope Cruz) enters the scene. We are not huge Woody Allen fans, but Ken and I both enjoyed this movie. It definitely has its sad moments, but it is also filled with joy and passion (and humor) - basically a story about the ups and downs of love and life.

With the kids, we watched Disney's A Christmas Carol, the recent animated version starring Jim Carrey as Ebenezer Scrooge. We love A Christmas Carol and usually listen to an audio version in the car each holiday season - we hadn't done that yet this year, so we enjoyed watching the movie together. We were surprised by how frightening this animated movie was, though - I think young kids would definitely be scared by it and maybe have nightmares.

Craig (14) went out to a party one night, so Ken and Jamie (18) and I watched True Grit, the 2010 version by the Coen brothers starring Jeff Bridges. I've heard great things about this movie and knew it had won awards. but I still wasn't sure I'd like a violent cowboy movie.  We all loved it! I was surprised by how funny it was...and also touching. Hailee Steinfeld, the girl who played the lead role of Maddie, was absolutely outstanding, as were Jeff Bridges and Matt Damon. Maddie, 14, hires Bridges, an aging US Marshal who is known as the toughest one around, to find her father's killer so she can take revenge. Damon plays a Texas Ranger also looking for the same man. Both men - and everyone else they come across - vastly underestimate Maddie. It is a fabulous story made even better with superb acting. Now I'd like to see the original version starring John Wayne.

With a houseful of guests for 5 days, we took a much-needed break one night and watched National Lampoon's Christmas Vacation. It was just as expected - total silliness and lots of slapstick humor featuring Chevy Chase - which was just what we needed. Lots of laughs with the family, and it made our own family seem downright quiet and normal!

Here at my father-in-law's house, we watched Mission Impossible 3: Ghost Protocol the first night we arrived. It was also as expected - lots of insane action scenes with Tom Cruise, an intricate plot (that my FIL couldn't follow), and all sorts of amazing high-tech gadgets. Fast-paced, filled with action, and fun.

Last night, we watched a classic thriller from 1978 that we thought my FIL might enjoy more (and that we've wanted to share with the boys for a while): Invasion of the Body Snatchers. Though not as lightning-fast as recent thrillers, it kept us all on the edge of our seats and yelling at the screen: "No! Don't fall asleep!" Is there anyone out there who isn't familiar with the plot of this classic? Two friends working for the Department of Public Health in San Francisco begin to notice strange things happening to the people around them, after unusual new flowers appear everywhere. High suspense follows. It's a classic for a reason, and we all enjoyed it (though the boys needed to watch an episode of Modern Family afterward before bed!)

Jamie actually made it to the midnight showing of The Hobbit on opening night, but the rest of us haven't seen it yet. When I was a kid, my family used to go to Toronto for New Year's Eve weekend and watch back-to-back movies in the new multiplexes there - lots of great memories of movies and New Year's celebrations. Wish I had the stamina for that now!

Have you seen any good movies this holiday season?

Happy New Year!

(If you are also interested in what we've been reading, check out the Monday post on my book blog).

Wednesday, December 26, 2012

Hectic Holidays!

I am sitting alone in our family room in a completely silent house, after a week of non-stop work and utter chaos!  Ahhhh....silence and solitude. I can hardly believe it.  Our last house guests left at 4 am, and my husband and sons are still sound asleep. 

Despite not getting to sleep until midnight (said guests and our sons were up late, talking loudly in the hallway right outside our bedroom door!), I was wide awake by 6 am this morning, with no hope of getting back to sleep, as I have been every morning for the past month or so. I have no idea why this is happening, but I can't take much more of it!  My usual bedtime meds are still working well, and I sleep soundly, but I wake literally at the crack of dawn every day. I have tried more melatonin, less melatonin, no melatonin, taking valerian when I wake at 6am, taking Ambien before bed, etc. No matter what I do, I still wake up too early. Obviously, I need to go to bed earlier, but that was impossible with a houseful of night owls.

So that frustrating lack of sleep (I normally need a solid 9 hours at night to be able to function during the day) made the exhaustion and over-doing ten times worse this past week. It felt like my husband and I spent all our waking hours preparing meals and cleaning up after meals! Even when we went super-easy and got take-out or just set out stuff for sandwiches, it was still a lot of work to feed between 6 and 14 people at every meal for five days. And I sorely missed my lying down time throughout the day. You really can't lie flat across the entire couch when you have that many people in the family room!

I don't mean to gripe and sound like a Grinch - it's just such a relief to have a chance to "talk" to people who will totally understand. It was actually very nice to see my family. There is nothing like little kids at Christmas-time, and I loved seeing my niece and nephew. My 6-year old nephew was so excited about opening presents, he was just bursting with joy! And when he opened our gifts and saw the Teenage Mutant Ninja Turtle action figures we got him (yes, they are back), he squealed in delight as if he'd won a million dollars. Gotta love that kind of unbridled joy and enthusiasm. My niece, though now conscious of not wanting to seem childish (at only 10!), was equally thrilled with the birthstone necklace we gave her.

I also love spending time with my mother, and she is very kind and understanding about my limitations. The rest of my family just sort of ignores my illness and changes the subject if I bring it up (which I rarely do since it obviously makes them feel uncomfortable). They rarely think to help out, either. My mom - who is 67 and had hip surgery a month ago and is still using a cane - was the only one pitching in at every meal and constantly asking how she could help, despite her own pain and exhaustion. I was grateful to her for that.

It really was good to spent time with everyone, but five days is a lot for me to be around other people, even people I love. I know you all understand that. We ate a lot of great food (too much!) and had lots of laughs talking, watching movies, and playing games. I just needed more downtime. My afternoon nap just wasn't enough - and of course, I was much too active every day.

I wish I could just lie here in the silence and appreciate my couch for the rest of the week, but we will soon be off on another adventure, to visit my father-in-law. The packing and traveling will be exhausting, but the visit will be low-key and quiet, since he is 87.

I hope you all enjoyed a relaxing holiday with family and friends.

My husband, sons, and I with my mom and her husband at a holiday party

Tuesday, December 18, 2012

Low Expectations

How's this for a cold splash of water on the face? My lawyer just called about my disability hearing tomorrow.
There are 5 disability judges in Delaware, and we have the 3rd lowest approval rating of all 50 states! He said he can tell by the way the schedule is arranged tomorrow that it will be one of 3 judges. Two of those have approval rates of 20% - that puts them among the lowest 10-15% of all the Social Security judges in the entire nation!! So, I have a 67% chance of getting a judge who almost always says no. Very discouraging! 
The whole process is just so unfair - the mere fact that it relies on which judge you get rather than the merits of your case is just crazy.
Wish me luck - I have a feeling tomorrow will be a difficult day emotionally.

Friday, December 14, 2012

A Season of Hope

I haven't had much energy left for blog writing the past two weeks, but the good news is that I have been using up all of my energy on some very worthy projects that give me a great deal of hope for all of us with ME/CFS and the future of our illness.

I was recently asked to join a fledgling organization called the National Advocacy Alliance for ME/CFS. Having been told for many years by the NIH (U.S. National Institutes of Health) that ME/CFS patients would have a much higher effectiveness if we banded together, a grassroots group has formed this Alliance and is moving forward aggressively on several exciting projects. It is a collection of existing state, regional, and other CFS-related organizations, including:
  • CFS Solutions of West Michigan
  • CFS Knowledge Center, Inc.
  • CFS/Fibromyalgia Organization of Georgia, Inc.
  • Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivity Coalition of Chicago
  • Coalition 4 ME/CFS
  • The Connecticut CFIDS & FM Association, Inc.
  • Massachusetts CFIDS/ME & FM Association, Inc.
  • New Jersey CFS Association, Inc.
  • P.A.N.D.O.R.A.
  • Phoenix Rising
  • Rocky Mountain CFS/ME and FM Association
  • Speak Up About ME
  • Vermont CFIDS Association, Inc.
  • Wisconsin ME/CFS Association, Inc. 
 Plus several individual advocates, like myself, who have contact with a number of other patients (for me, through this blog and our growing online parents' group).

One of their first projects is an awareness poster that is almost ready for the printer. It features several different ME/CFS patients' photos, plus some information on the severity and symptoms.

To go along with the poster, they are working on some website text that all of the organizations above can use to go along with the poster and link to additional information.  I was helping out with the editing on that this week.

The other exciting development is that the CDC (U.S. Centers for Disease Control & Prevention) is adding a new section to their website on pediatric CFS (finally!) and is actively seeking input from a wide range of stakeholders. Yes, you heard that correctly - the government is actually listening to input from outside sources! Yesterday, another mom, who heads up Speak Up About ME, and I had a teleconference call with several people from the CDC to give them input on what we thought was most important for their new pediatric webpage.  They were truly interested in our input, listened actively and asked questions, and invited us to e-mail any additional information and resources we had. I was so excited after that phone call that I couldn't nap yesterday! Finally, they are listening to patients and parents, actively including us in the process, and moving forward to address the horrible lack of attention to pediatric CFS. After my unsuccessful nap, I spent another 90 minutes writing up my suggestions, with links to more information, for the treatment section of the pediatric webpage.

So, that is why I am so exhausted and lacking in time or energy for more writing! But I am filled with hope. All of our advocacy efforts - letters, awareness campaigns, donations, testimony at CFSAC - is all beginning to pay off. Things are moving forward!  In addition, for several years now, we have seen significant movement forward in ME/CFS research - with more and better studies rooted in hard science digging into the mysteries of our illness.

It just all fills me with a tremendous amount of hope for our futures. This entire landscape has changed dramatically from when I first got sick 10 years ago. Then, the government was paying almost no attention to CFS, patients were not involved at all, and the few research studies being done all seemed to focus on psychological issues. True, we still have a long way to go before all medical professionals know how to effectively treat ME/CFS, but we are making progress and moving forward!

And now, with most of my obligations finished, I can finally turn my attention to the holidays and my family. Wishing you all a season of hope and joy! 

Monday, December 10, 2012

Movie Monday 12/10's been a whole week since I posted here.  Sorry about that.  I had a pretty good week, with just a 2-day crash (and emotional melt-down!) in the middle of it, but I've been very busy with the holidays approaching.  Tough time of year to fit in blogging!  I do hope to write more here this week, but we will see...I have a writing assignment to work on that has to take priority.

Anyway, we saw one movie this weekend:

Ken and I watched Hope Springs Friday night, and we both enjoyed it very much. You've probably seen the ads that are saturating TV lately. Meryl Streep and Tommy Lee Jones star as a married couple stuck in a major rut. Their kids have left home, they never touch each other (haven't had sex in 4 years!) and rarely talk. They are just sort of living parallel lives in the same house, and Kay is very unhappy. In desperation, she signs them up for a week-long intensive marriage therapy course run by a therapist whose book she read, played by Steve Carrell. Arnold is not at all pleased with these arrangements but he does finally agree to go. The story follows their week in therapy as they attempt to reconnect. There are some funny moments in the movie, especially in their awkwardness as they try to resume their physical relationship, but the subject matter is taken very seriously, too. In fact, I've never seen Carrell in such a serious role - he plays the straight man here. All in all, we both really enjoyed this story of an older couple rebuilding their relationship. All 3 actors were excellent in their roles.

Have you seen any good movies lately?

Monday, December 03, 2012

Movie Monday 12/3

My younger son was home sick for three days last week (crash caused by a viral trigger) which would normally mean lots of movies, but he was only in the mood for TV!  He was on a History Channel kick, watching endless episodes of Pawn Stars, Storage Wars, and American Pickers.

We had a very busy weekend but did find time in the evenings for some movies:

Saturday night, my husband and I watched Seeking a Friend for the End of the World, a very unusual sort of romantic comedy starring Steve Carell and Keira Knightley.  The movie opens with a giant meteor hurtling toward the earth, with a last-ditch effort to stop it having failed.  So, yes, the “end of the world” in the title is meant literally, as the entire population of the earth prepares to die in three weeks.  Carrell’s character, Dodge, is his usual sort of mild-mannered, dull guy who works as an insurance salesman and whose wife left him when the big news was announced.  Sounds sort of depressing, doesn’t it?  Oddly, though, it has its funny moments (mostly dark comedy, as you can imagine), and at its heart, it is a warm, touching love story.  When rioting chases him out of his city apartment (New York, I think), Dodge decides to set off on a mission to find his high school sweetheart who recently wrote him, saying he was the love of her life.  On his way out, he teams up with his quirky neighbor, Penny (played by Knightley), in order to save her from the riots.  They end up on a very strange road trip, encountering all sorts of odd things as people all cope in their own ways with the projected end of the world.  Overall, we really enjoyed it, and it has a great soundtrack.
Sunday night, our 14-year old son chose the movie:  National Lampoon’s European Vacation.  We recently introduced him to the classic comedy, Family Vacation, and he does enjoy silly comedies!  It was as expected – lots of goofy, predictable jokes but funny nonetheless.  Lots of laughs and not a single redeeming feature – just a bit of escapist fun to end the weekend.

Ken and I are kind of at a lost on weeknights, since we caught up with both The Good Wife and Treme on DVD.  We are enjoying Elementary and Perception.  And we watch Revolution, Bones, and Glee with Craig before he goes to bed.  Any other good TV shows we should check out?
Have you seen any good movies lately?