Movie Monday 5/27

Happy Memorial Day to everyone in the U.S.! I've been thinking a lot today about my grandfather, my uncle, and my great-uncles, who all served in the military at various times and are no longer with us. They are all missed.

We had a very low-key, relaxing holiday weekend. Just what we needed! Our younger son traveled to Connecticut to help his grandparents get their sailboat ready for the season, and our older son came home from college last week, so it was odd having the older one here but not the younger one. Our  college son, Jamie, was off with friends for much of the weekend (he is still feeling great!), but he also spent some down time watching movies with us and catching up on TV shows:

Friday night, while my husband was out golfing, Jamie and I ordered pizza and found an interesting-sounding movie available for free on amazon, Surveillance. We were both a little disappointed in it, but it was OK. It's about two FBI agents who come to a small town to help the local police track down some brutal serial killers. There were three survivors from the killers' latest massacre: a little girl, a woman who's a drug addict, and a police officer. The movie follows each of their interviews, but their stories just don't add up. There are some surprises here (though Jamie said he figured it out half-way through!), and it's a unique story. It's just not an excellent movie - decent but not excellent.

Saturday night, we watched a much better movie, District 9, a unique sci fi story. A giant alien spaceship came to Earth 20 years earlier, hovering over Johannesburg, South Africa. Humans broke into the spaceship, captured all the aliens (who look kind of like giant insects and are nicknamed Prawns by the locals), and segregated them into one area of the city, known as District 9. The area soon became a slum, but violence and problems between the local humans and the Prawns have accelerated. When the movie opens, the humans have decided to relocate the aliens into a desolate area outside of the city, and members of a huge corporation that has been put in charge of the aliens are going into District 9 to evict all the Prawns. This was a fantastic movie, far better than I expected. I thought it would be all action and violence - and there is certainly some of that - but the heart of the story is the humans' mistreatment of the alien species and what happens to one particular alien and one particular human. All three of us loved it - interestingly, you find yourself rooting for the aliens!

We also tried a new TV show this weekend, Defiance. It's another sci fi story, this one set 30 years into the future after aliens have invaded earth, in a town called Defiance where humans and various alien species live side by side peacefully. We've watched the first two episodes and are hooked already!

Have you seen any good movies or TV shows lately?

Watch CFSAC Live Today

Better late than never....crazy week here.

Yesterday and today is the Spring 2013 meeting of the CFS Advisory Committee to the Department of Health and Human Services in the U.S. You can watch the meeting live here. And here is the meeting agenda so you can decide which parts you'd like to see. There is a public comment period scheduled for 11:15 am EST today and a public Q&A period (new feature!) at 2:45 pm. The main talks today are on Health Insurance at 10:15 am and (my personal favorite) How To Get More Clinicians Involved in ME/CFS? by Dr. Susan Levine at 1:30 pm.

So, tune in at least for a part of the meeting, if you can. The public comment and Q&A periods yesterday were very interesting.

We're on the road today, going to see my son's Lyme doctor in NJ, so I'll miss most of today's webcast, but CFSAC will post videos of each portion of the meeting afterward.

Movie Monday 5/20

Busy, stressful week last week for me, but it improved toward the end. I went out with four of my closest friends for dinner Thursday and came home feeling relaxed and happy - nothing like some girl talk to make you forget all your problems!

We saw a couple of good movies this weekend:

Friday night Craig had a friend sleep over, so Ken and I watched Silver Linings Playbook (yes, finally!). It's a funny, frantic, big-hearted drama about mental illness. Bradley Cooper plays a guy recently diagnosed as bipolar who has just been released from a court-ordered stay in a mental hospital after severely beating his wife's lover. Cooper does a fabulous job playing the often-manic Pat who has moved in with his parents in Philadelphia (his dad is played by Robert DeNiro) to try to recover and put his life back together. He is still in love with his wife but unable to see her because his restraining order is still in effect. He meets his best friend's sister-in-law, Tiffany, played also fabulously by Jennifer Lawrence. Tiffany has her own problems - she is trying to recover from severe depression (and compulsive sex) after the death of her husband. Pat and Tiffany become friends and enter into an agreement to help each other: Tiffany will help Pat contact his wife, and Pat agrees to help Tiffany with an upcoming dance competition she wants to enter.  Although there are plenty of funny moments in the movie, the lead characters' mental illnesses are dealt with realistically and sensitively. The movie's setting in Philly is also done perfectly (we live just south of Philly) - they really captured the local color and Eagles' fanaticism!  Great casting, great acting, great dialogue - it's just an excellent, satisfying movie from start to finish.

Sunday night, Craig and Ken and I took a totally differently tack and watched a comedy, Guilt Trip, starring Seth Rogen as Andy, a chemist, and Barbra Streisand as his mother, Joyce. Ken and I aren't huge fans of Rogen, but the movie was pretty good. Joyce is an overly attentive mother who has been widowed for many years and has given up on love. Andy asks his mother to join him on a cross-country road trip as he tries to launch his own business, though he has an ulterior motive in asking her along. Although the smothering Jewish mother jokes got a little old for me at one point, the movie is more than just an on-going series of gags (thankfully) - it actually has some heart in it and some underlying emotional depth as the mother-son relationship evolves. It's not Oscar material, but it was a pleasant 90 minutes.

Have you seen any good movies lately?

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

Post-Mother's Day Crashette

This is my new favorite word: crashette. A friend and I were e-mailing about lunch plans for tomorrow, and I warned her I wasn't feeling well today so would have to see how I'm doing tomorrow (she is very used to my not being able to plan ahead and is very patient!). She replied that she hoped this was just a "crashette" and not a full-blown crash. Isn't that great? Love it. And, yes, this is an amazing friend who is very understanding and kind.

So, I apparently did too much this weekend, but I am hoping the crash doesn't last too long. For Mother's Day, we visited my mom in Connecticut, along with my sister and her family. On Sunday, my mom and her husband had planned a big scavenger hunt at a local beach park for all 10 of us. In past years, I haven't been able to walk around for this type of thing, but - thanks to beta blockers and my heart rate monitor - I managed pretty well this year. I was teamed up with my mom's husband, my sister, and my fabulous 11-year old niece, and we had a lot of fun. I have been working on increasing my stamina and can now handle up to a 40-minute walk on a good day (staying within my heart rate limitations) without crashing the next day. But, by the time we got back in the cars, my heart rate monitor showed we'd been walking around for 1 hour and 30 minutes! Definitely beyond my limits.

As is often the case, I was OK yesterday, but the effects hit me last night, and I woke up today feeling crummy. I have learned, though, after 11 years, to give in and take care of myself when I crash now. I am not a quick learner, but I am finally trained in this respect!  So, today was a Plan B day, and I not only rested physically but gave in to a restful mindset right from the start of my day. I am hoping to feel well enough tomorrow to manage that lunch with my two close friends (and a meeting in the morning with my lawyer to close out my disability case with him).

I am not the only one still trying to recover from the weekend. In addition to the scavenger hunt, my sons were both up until 11 pm both Friday and Saturday night and were exhausted by the time we got home on Sunday evening. Amazingly, my 18-year old is doing fine now and hasn't missed any classes in college, but my 15-year old is still wiped out and also suffering from exacerbated allergy symptoms. he made it to school yesterday and today but took a nap as soon as he got home (he's in bed now).

So, we are resting and waiting and hoping these are just crashettes for us both. It was worth it to spend time with my family and especially with my niece and nephew!

My family after our scavenger hunt on Mother's Day

International ME/CFS Awareness Day 2013

I realize I am a day late, but I was away all weekend visiting my mom for Mother's Day and her birthday (I hate how Awareness Day always falls near Mother's Day weekend!). I figure we can use all the awareness we can get 365 days a year, so better late than never...

For starters, here is what I am posting on my Facebook wall for my friends and family (to keep it manageable, I only friend my family and in-person friends on Facebook), along with a link to this post:

"Yesterday, May 12, was International ME/CFS Awareness Day. ME stands for Myalgic Encephalomyelitis, the name by which this devastating illness has been historically known throughout the world, and CFS stands for Chronic Fatigue Syndrome, the silly-sounding misnomer the CDC saddled us with in the 1980's. I have had ME/CFS since March 2, 2002, and both of my sons have had it since 2004. Scientists have confirmed that this disabling illness has both genetic and infectious components, though they have not yet pinpointed the cause(s) or cure. At its heart, ME/CFS is an immune system disorder, causing parts of the immune system to over-react and parts of it to under-react. In a devastating cascade of effects, it causes problems with the immune, endocrine, and nervous systems. The mitochondria (i.e. energy producers) in our cells don't work properly and don't process oxygen normally so that even mild exertion - like a short walk or going up the stairs - can result in suddenly feeling as if we have the flu, and those effects can last days or even weeks. Jamie, Craig, and I have all improved somewhat with various treatments (mostly lots of medications), but not everyone is so lucky. Many people with ME/CFS are housebound or even bedridden. For more information and to learn how to help, check out this blog post." (with a link to here)

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask you), here are some other ways to help further ME/CFS education and research:

• Learn more about ME/CFS. Here are some sources of information you can share with others:

1. About CFIDS by the CFIDS Association
2. An Overview of Chronic Fatigue Syndrome by Phoenix Rising
3. The CDC's information on CFS
4. My own article, CFS: An Invisible Illness, published last fall on Lively Woman
5. Our public testimony on pediatric CFS at last year's CFSAC meeting.

• You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know the economy has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities:
• CFIDS Association of America/Research 1st
• Open Medicine Institute (click in the upper right corner to donate)
• ME/CFS Australia
• Simmaron Research
• ME Research UK
• You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
• iGive
• Good Shop
• You can even earn money for CFS research when you use a search engine:
• Good Search
• iSearchiGive

Happy (belated) Awareness Day!  Help to spread the word!

(feel free to link to this page or share its information)

The Thrill of Victory and the Agony of Defeat

Even after 11 years of living with ME/CFS, the emotional highs and lows that go along with the unpredictable physical symptoms still take me by surprise. I know intellectually that it's all about chemistry - cellular metabolism, hormones messed up, neurochemicals in the brain present or absent - but it still feels like some kind of voodoo when these ups and downs hit me.

This week has been a typical rollercoaster in that respect. I'm going without Imunovir for the 3rd week in a row (it's been back-ordered - more on that next week), so I expected to feel awful, but I've actually been doing pretty well - just when you think you can predict this crazy illness, it proves you wrong, just to keep you on your toes! Monday night, I was looking forward to the next day - nothing special going on, but I was feeling good and just looking forward to another good day.

I woke on Tuesday feeling a bit tired but thinking I'd be OK. I had to drive my husband to the eye doctor for a retinal check (all good!), and while I waited in the waiting room, I felt worse and worse. By the time we left there, I was achy all over, exhausted, even getting a mild sore throat - you know, typical CFS crash. But we had some errands to run, and we had been looking forward to having lunch together, so I kept going. An hour later, I was hitting bottom, not just physically but emotionally, too. I was feeling like I just couldn't take another moment of being in the car, and even after I got home and into bed, I felt horribly depressed, thinking to myself that I couldn't possibly tolerate a whole lifetime of this torture. Now, that is a pretty normal feeling for many people with ME/CFS, but as I said, I've actually been quite well lately. I couldn't believe that one bad day could put me in such a dark state of despair.

The next day, Wednesday, I woke up feeling good again. I was able to go through with my plans to go shopping for Mother's Day and my mom's birthday (both this weekend) and took advantage of the rare shopping excursion to get a few things for myself, too. I had another good day today, picking up the house for our cleaning service, dancing to the radio, sending my gifts from the Post Office, and even doing a little weeding in our flower bed (yes, all in one day!).

During these last two good days, I have been feeling euphoric, absolutely filled with joy and grateful for every small thing in my life. Like I said, I know it's all brain and cellular chemistry, but it still feels so miraculous...and bizarre. If I didn't know better, I would fear that such drastic mood swings meant I was losing my mind! But no, it's just another "normal" week in the crazy life of someone with ME/CFS, riding the rollercoaster of chronic illness. Wheeeee!

Videos from FDA ME/CFS Workshop Posted

The FDA was very quick to post videos from their recent workshop on Development of Safe and Effective Drug Therapies for CFS and ME (I was a little slow, but they were quick).

If you go to this website, you will see a list of archived videos. They conveniently broke the meeting down into manageable pieces, so you can just watch the parts that are of interest to you or watch them all, one at a time, when you're able to.

I saw some of these live (but not all of them). I highly recommend any of the patient panels - it was so exciting to watch all these people from the FDA listen to what regular ME/CFS patients and clinicians had to say! One of my favorites was Patient Panel #2.

This meeting was ground-breaking! Hope you enjoy peeking in and seeing for yourself.

Movie Monday 5/6

Ahhh...a quiet and peaceful Monday. I needed that. My 15-year old son, Craig, was home sick all last week with a sinus infection that made his CFS flare-up, so it was a treat today to be home alone, without the TV constantly blaring. And, of course, I was glad he is feeling better!

Despite all the sick days last week, we didn't watch a lot of movies. I've almost given up on convincing my son to watch movies when he is sick. He's got a short span of attention and prefers TV shows - even if he's seen them a half dozen times before! So we watched lots of episodes of his favorite TV shows, including Community, The Office, The Big Bang Theory, and The Middle. Yes, he likes comedies!

We had a very busy Saturday. My mom and her husband were visiting from Connecticut, I had a book signing in the morning, then Craig had a soccer game in the afternoon. By 5 pm, he and I were both exhausted, so we came home with my husband, ordered pizza, and watched a movie we've all been wanting to see:

The Hobbit. Our oldest son saw it at a midnight showing the night it was released (now you know he is doing better!), but the rest of us missed it in the theater - I bet it was spectacular on the big screen. My son and husband especially enjoyed it, as they are both huge fans of Lord of the Rings (my son loves the movies, and my husband loves the books!). It is an epic fantasy, much like the LOTR trilogy movies, with stunning scenery shot in New Zealand, all kinds of fantastical creatures come to life, and gruesome battle scenes. Although it was a bit more action and violence than I usually like in movies, I did enjoy it. When I first met my husband 25 years ago, I'd never read any Tolkien, and he introduced me to The Hobbit, which we read aloud to each other when we were dating. So, I have great memories of the story and especially enjoyed seeing the scene in the cave with Gollum come to life ("What's he got in his pocketses?").  We are all looking forward to the next two movies!

Have you seen any good movies lately?

(If you are interested in what we are reading this week, check out the Monday post on my book blog.)