Monday, May 27, 2019

Movie Monday: Fracture

We are getting a little bit bored with all the TV shows we are keeping up with at this point in the season (especially since we've been watching some of them for 3-4 seasons and are on the 15th or 20th episode of the season now!), so we decided to watch some movies this weekend. Last night, we found a thriller from 2007 on Netflix that sounded good, Fracture, and it lived up to our expectations with plenty of suspense and creeping tension!

Anthony Hopkins stars as Ted Crawford, a wealthy and brilliant man who investigates plane crashes and spends his spare time creating beautiful and intricate marble runs and perpetual motion machines. In the early scenes of the movie, he witnesses his wife and her lover together at a hotel, goes home to wait for her, and coldly shoots her in the head. He is calm and meticulous as he waits for the police, gun in hand. Lieutenant Ron Nunally, played by Billy Burke, shows up with a SWAT team and falls to the floor in shock when he sees the bleeding woman, who is - you guessed it - his lover. Over in the Los Angeles D.A.'s office, Willy Beachum, played by Ryan Gosling, is a quiet and unassuming young man from Oklahoma who has a 97% conviction rate. Although he is being hired by a ritzy corporate firm, he is assigned this one last case, Crawford's, because the police say it is a slam-dunk with the weapon and a signed confession. Willy is schmoozed and distracted by his new firm and especially his new beautiful boss, Nicki, played by Rosamund Pike. He is completely stunned to go to court, expecting a quick guilty plea from the old white-haired man, to find a sly, clever defendant who insists on representing himself, pleads not guilty, and requests that the case go directly to trial without the preliminaries. Soon enough, every single piece of police evidence falls apart, bit by bit, and Willy finds himself struggling to figure out how to convict this man who he knows is guilty.

Anthony Hopkins is at his most Hopkins-esque in this tense thriller, playing with his opponent as only Hopkins can, like a suited, gentlemanly Hannibal Lector. As Crawford, he is intelligent, arrogant, and certain that no one can touch him, further frustrating Willy. The tone is dark, as befits a thriller, but with a subtle sly humor, thanks to Crawford's refusal to take the proceedings seriously. We joked before the movie started that Gosling usually plays a brooding, mostly silent character in his films, and there is some of that here, but at the beginning, you also see Willy as a smiling, happy, upwardly mobile guy with everything looking perfect for his future. Of course, Crawford pulls that easy confidence from him, little by little. As the audience, you watch Crawford shoot his wife in the opening scenes, so you know he did it, but the real mystery here is how can he get away with it? It's a captivating question that kept us rapt and guessing right up until the very last scene.

Fracture is currently playing on Netflix and it is available for rent streaming on Amazon, starting at $3.99.
We love thrillers and mystery/suspense movies, but it seems to us like there aren't as many of them (and certainly not as many good ones) today as there were 10 or 20 years ago.

What movies do you recommend in the thriller/suspense/mystery genres? We also enjoyed A Simple Favor (dark, suspenseful, and funny) and Taking Lives (though it is from 2004 - see what I mean?) recently.

Check out this trailer - you'll be hooked!

Sunday, May 26, 2019

Weekly Inspiration: Chronic Illness Bloggers

Today, I thought I'd share some inspiration from around the web from other chronic illness bloggers. These wonderful blogs are not all specifically about ME/CFS, but they each have some great tips to share with their fellow chronic illness sufferers. And several of today's picks are about traveling while chronically ill, just in time for vacation season!

Check out:

What To Do When a Doctor Isn't Listening To You from Kate the (Almost) Great, who blogs about her journey with arthritis. My answer to that question would normally be, "Get out of there and never go back!" but Kate has some really great tips to help you get the most out of any doctor's appointment.

Boost Your Belief and Maximise Your Motivation from the ME/CFS Self-Help Guru. Julie is a great writer, with a strong focus on improving your life with chronic illness and finding joy. She was my editor at ProHealth for many years, so I can attest to both her writing abilities and her deep well of inspiring topics. This post is about a FREE 5-day challenge Julie runs that begins Monday, May 27 (tomorrow!). She's gotten some great feedback from this challenge in the past, which you can read about at the link.

Did Your Chronic Illness Insist That You Spend Your Vacation In Bed? from The Disabled Diva. Cynthia lives with multiple chronic illnesses, and this post includes some great travel tips for those with chronic illness to encourage you to go ahead and take that trip you want to go on but to be prepared to take care of your needs on the road. And if you are planning a trip, you can also check out my own guide for Traveling with ME/CFS, with all of the tips that help me to be able to travel.

How To Plan a Wheelchair Accessible Trip from Travel Breathe Repeat, where Sarah, who has a chronic illness, writes about her travels with her husband. This post has some great tips for traveling when you use a wheelchair.

Hope these great blogs and posts provide some inspiration for the new week for you! If you've seen other inspiring blog posts recently (or written one yourself!) please share the link in the comments below.

Thursday, May 23, 2019

ME/CFS Community Update

“Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one.' ” C.S. Lewis
I am still trying to catch up from my many travels the past two months. I finally cleared my e-mail inbox, but the list of things I want to cover here on my blog just keeps getting longer! I'm going to split the news I want to share with you into Community Updates and Research Updates.

Today's focus is on patients, with lots of exciting news from the worlds of patient communities and advocacy:

Our Own Local Support Group
The local support group I started nine years ago has grown to about 40 families in our region, with a variety of related conditions including ME/CFS, Lyme, EDS, POTS, and more - some with sick adults and some with sick kids, teens, or young adults. We had one of our local gatherings yesterday, meeting for lunch at a restaurant, with ten from our group able to attend. About half were mothers of sick teens/young adults and the other half were sick themselves, and two people were fairly new to our local group and had never met anyone else before. As always, the experience of meeting others with the same illnesses and experiences was reaffirming and helpful to us all. We talked for almost three hours (then I went home for a 90-minute nap!) about effective treatments, the best doctors in the area, our experiences, and more. It is always a very positive, supportive, and uplifting experience, even for someone like me who's been in the group since the beginning and sick for 17 years. As always, I highly recommend that YOU try to find others in your local community - it is life-changing. This article I wrote, Birds of a Feather - The Joys of Community, tells how our group started and provides tips for finding others in your area.

ME/CFS International Awareness Day and #MillionsMissing
This summary and photos from #MEAction of protests and activities held both publicly and online on ME/CFS International Awareness Day all over the world is truly inspiring. Take a moment to read through all the amazing events held on May 12 and to peruse the many photos of patients speaking up, in public and from their beds. Given how isolated and alone most of us were when we started on our illness journeys, it is stunning to see this evidence of patients coming together all over the world to be seen and heard. It gives me even more hope for a better future for all of us. If you didn't have a chance to take part in Awareness Day activities, in person or online, this year, maybe this moving sum-up will inspire you to get involved next year, if even from your couch or bed. After decades of isolation and ignorance, our voices are finally being heard, and it's a powerful thing to see.

Exciting News from Patient Advocate & Community Leader Jen Brea
It's been all over the internet this week - Jen Brea, co-founder of #MEAction and the filmmaker who created the ME/CFS documentary Unrest, is officially in remission. This blog post describes in her own words what happened and how she got to this point, and it's a remarkable story, given how severely disabled Jen was at various times and how well she is now (though still working hard at recovery and rehab). In her case, the underlying cause of her ME/CFS was several mechanical factors in her spine and neck that were corrected with multiple surgeries, something she and her doctors discovered entirely by accident. Although obviously, this will not be the case for every (or even many) ME/CFS patients, I do know others like her and it is likely behind some percentage of ME/CFS cases and so provides clues as to the wide variety of causes and factors in our very complex condition. In that post, Jen describes her elation at her remission, yes, but also her grief, trauma, guilt, and hope. Even if Jen's case is entirely different from your own, we should still be able to share in her triumph and learn from her experiences. There is still so much we have to learn about the various causes and factors behind ME/CFS for the millions of people suffering around the world - many of whom Jen has helped with her film, her advocacy, her activism, and her honest reaching out to others.

Jen Brea and her husband

Other ME/CFS Blogs
Finally, if you're looking to connect with others with ME/CFS online, Liz of the Despite Pain blog, put together a wonderful list of ME/CFS bloggers. Liz doesn't have ME/CFS herself, but she compiled this list for ME/CFS Awareness Day, in honor of her fellow chronic illness patients who do have ME/CFS and to help build awareness for our cause, which I think is a remarkable way to reach out. Check out her list (including this blog!) and go discover some new-to-you bloggers and other ME/CFS patients. It's a great way to begin building YOUR community!

Do you have any news to share from your local or online community? Leave a comment below to help spread the word and connect to other patients.

Sunday, May 19, 2019

Weekly Inspiration: Thoughts on Illness from Being Mortal

Last fall, one of my book groups read Being Mortal by Atul Gawande, a nonfiction book by a medical doctor who writes about illness, death, and end-of-life issues from both personal and professional experience. The book is well-researched in its facts, and he is open and honest about his emotional experiences, with his father's illness and death and with his patients' various experiences. It is a moving and very powerful book, and we had a huge turnout for book group, and an excellent and in-depth discussion about it. You can read my full review of the book at my book blog. He covers the state of the medical profession today with respect to these topics and also some (far more hopeful) examples of new approaches, as well as what he learned personally through his difficult experiences.

While everyone should read this important book because we will all deal with sick and dying family members - and eventually, ourselves - one day, I also found that I related to many passages as someone not dying but living with chronic illness. Here are a few of the quotes that really struck me, with respect to my own life.
""No one pitied him as he wished to be pitied," writes Tolstoy. "At certain moments after prolonged suffering he wished most of all (though he would have been ashamed to confess it) for someone to pity him as a sick child is pitied. He longed to be petted and comforted.""
          - Quoted in Being Mortal from a novel, The Death of Ivan Ilyich by Tolstoy.

I don't like the word "pitied" in this passage, but I can wholeheartedly relate to the sentiment - maybe swap out "pitied" with "understood" or "accepted." Certainly, especially in my early days of illness and anytime I crash/relapse badly, I crave to have someone treat me as my mother did when I was a sick child - to comfort me and take care of me. But Ivan Ilyich's experience with his terminal illness in this novel is much like the typical experience of people with chronic illness - it makes others uncomfortable and scares them, so no one will just admit what is happening and treat you honestly. I completely understand that (and I'm now interested in reading this Tolstoy novel!).

Here, in a later passage, Gawande refers back to the Tolstoy novel and explains it this way:
"Tolstoy saw the chasm of perspective between those who have to contend with life's fragility and those who don't. He grasped the particular anguish of having to bear such knowledge alone."
          - from Being Mortal by Atul Gawande

Ah, yes - he explains that far better than I could! That's the crux of it, isn't it? Life's fragility. It's what scares people so much, with chronic illness, as well as terminal illness or death. No one wants to accept the truth of your situation because of that underlying, unspoken fear that if it happened to you, it could happen to them. I think this is behind much of the denial we experience as those with chronic illnesses encountering healthy people, even (or especially) our closest family members.

Regarding the medical profession and being a doctor:
"If your problem is fixable, we know just what to do. But if it's not? The fact that we have no adequate answers to this question is troubling and has caused callousness, inhumanity, and extraordinary suffering."
          - from Being Mortal by Atul Gawande

So many patients with ME/CFS (or undiagnosed tick infections) have experienced exactly this response from the medical community. One rheumatologist I saw during my first, mysterious year of illness gave me a cursory exam (clearly looking for the tender points of fibro, which I didn't have), wouldn't let me talk, and then dismissed me with "I have no idea what's wrong with you. Good luck," and walked out of the room. I was left sitting on the exam table in my paper gown, gutted by his lack of compassion, and I burst into tears. Thank goodness he was the exception for me and at the end of that year, I found a new primary care doctor who not only immediately recognized my illness as ME/CFS but also knew enough to offer me some treatments. But I know I was one of the lucky ones, that many patients never find a doctor like mine, and treatment from medical professionals like Gawande describes is far more common.

"Whatever the limits and travails we face, we want to retain the autonomy - the freedom - to be the authors of our lives. This is the very marrow of being human."
          - from Being Mortal by Atul Gawande

Here, he has realized what is at the center of end-of-life issues: the need to be in control. He finally recognized the very dehumanizing feeling of having no say in what happens to you. Again, this applies equally well to those with chronic illness, and is why I often express here on the blog the importance of being your own advocate, learning as much as you can about your illness, and asking your doctor for specific treatments. The old model of the all-knowing doctor simply doesn't work for us (and according to Gawande, it rarely does in any circumstance!). We need to be partners in our own care. Check out my page on Effective Treatments for ME/CFS for a roadmap on how to get started in this critical part of our illness journey.

As you can see, I got a lot out of this very important and powerful book. While it brought back memories of my own dad's death from melanoma a few years ago and thoughts about the wishes of my 94-year old father-in-law, much of the book also felt relevant to my own life with chronic illness. I highly recommend this book.

Have you read Being Mortal yet? I would love to hear your thoughts - about the book or these quotes I have excerpted here - in the comments below.

I read Being Mortal in print:

It is also available as an audio book - at the link, you can listen to a sample, which is about the passage from the Tolstoy book:

Tuesday, May 14, 2019

TV Tuesday: Proven Innocent

One of the many new spring TV shows my husband and I are enjoying is Proven Innocent, a legal thriller focused on wrongful convictions.

Madeline Scott, played by Rachelle Lefevre, and her brother, Levi, played by Riley Smith, were convicted of the murder of their friend, Rosemary, when they were just teenagers. The pair spent ten years in prison and then were finally freed, when a lawyer named Easy Boudreau, played by Russell Hornsby, overturned their conviction. Madeline got her law degree and is now in practice with Easy, focused on wrongful convictions. The man who put Madeline and her brother in prison is Gore Bellows, played by Kelsey Grammer, and he is now a powerful District Attorney running for State Attorney General, so Madeline finds herself going head to head with him in many of her cases. He still believes she is guilty and has no respect for her innocence project, but she could definitely get in his way of climbing the political ladder, as the overturned convictions make headlines.

Each episode features a different case, with a prisoner or someone who believes in their innocence asking the team to take on the case. In that way, it plays like many legal thrillers, with mysteries, evidence, and a courtroom scene or two. There are also flashbacks and a secondary investigation, running throughout the season, as Madeline is determined to find out who really killed Rosemary all those years ago. Many of the cases feature details that you could find in today's newspapers, making them current and relevant. Lefevre is convincing as the determined and single-minded Madeline, and Grammer makes a menacing evil politician, all the more frightening because he truly believes he is doing the right thing. We are nine episodes into season one, and so far, the team has won most of their cases and gotten wrongful convictions overturned, but we figure they can't always be successful, and a recent episode did end in a devastating loss. We are enjoying the suspense and action, as well as the personal drama behind the scenes and the varying stories in each episode. It might be a little bit too optimistic in the team's success rate, but it's fun to root for the good guys!

Proven Innocent airs on Fox Fridays at 9 pm, and we have been watching it On Demand (we are 9 episodes into the 13-episode season). All of the episodes have aired now, and all are still available On Demand or on the Fox website, but I see that the last episode expires on May 17 (I hate when they do that), so you might have to binge this week, like we will! I believe it is also airing on Hulu or you can watch on Amazon for $1.99 an episode or $19.99 for the first season.

Have you seen Proven Innocent yet? Are you enjoying it?

Thursday, May 09, 2019

What YOU Can Do for International ME/CFS Awareness Day/Month!

May 12 is International ME/CFS Awareness Day, which unfortunately falls on Mother's Day weekend again this year when we are always away visiting my mom, so I am posting this information today to help you prepare. The entire month of May is ME/CFS Awareness Month (and also Lyme Disease Awareness Month), so you can do a number of easy things to help raise awareness all month long.

There are lots of easy ways for you to help spread the word, including:

And I use this day/month to tell my friends and family about ME/CFS, too. I use my main Facebook account for just close friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May is the exception each year. Here is what I am posting on my Facebook wall for my friends and family:
"May is ME/CFS Awareness Month (and Lyme Disease Awareness Month). Most of you know that my son and I both have ME/CFS (and he has Lyme plus 2 other tick infections), but you may not know what that means, since the U.S. name, Chronic Fatigue Syndrome, is misleading. ME/CFS is a debilitating immune disorder that has dramatically changed our lives the past 17 years. If you see either of us out in the world or even just look at our photos on Facebook, you may think we live pretty normal lives...but that's why this is called an Invisible Illness. In reality, you only see us out and about when we are having a good day, and even then, we need a LOT of extra sleep, I can't get through the day without a nap after lunch, we almost always have symptoms, and we both have to carefully monitor and limit our activity levels. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. Even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks afterward. A simple infection like bronchitis can knock us out for weeks. But, we are the lucky ones. About 25% of those with ME/CFS are housebound or even bedridden. Worst of all, few people - and very few doctors - understand ME/CFS, so Awareness Month is really important to us. You can help to spread the word by sharing this post or clicking the link to learn more (you can also donate to ME/CFS research on that page). If you know a friend or family member who has or might have ME/CFS (or tick infections which have similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far."
Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask), here are some other ways to help further ME/CFS education and research - share these resources widely!
  • Learn more about ME/CFS. Here are some sources of information you can share with others:
  1. What is ME/CFS? by Solve ME/CFS Initiative
  2. An Overview of ME/CFS by Phoenix Rising
  3. The CDC's information on ME/CFS
  4. Our public testimony on pediatric ME/CFS at the 2011 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. I also set up a recurring donation for one of these of just $5 a month - easily affordable but not noticeable day by day!
  • You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
  • You can even earn money for CFS research when you use a search engine:
Happy Awareness Day/Month!  Help to spread the word!

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

Tuesday, May 07, 2019

TV Tuesday: The Fix

I am a loyal listener of the Happier in Hollywood podcast, hosted by two TV writers who have been friends since high school and writing partners for 15 years, Elizabeth Craft and Sarah Fain (Elizabeth is also co-host on the Happier podcast, with her sister, famed self-help author Gretchen Rubin). For the past year or so, Liz and Sarah have been talking about a TV show they were working on - first writing a pilot, then pitching, and finally actually producing at ABC - and I have been excitedly looking forward to seeing it come to life. It is now on the small screen, a thriller called The Fix, that the partners created, wrote, and produced along with Marcia Clark, and my husband and I are both enjoying it very much.

Robin Tunney, who played Teresa Lisbon on The Mentalist, here plays Maya Travis, a famous lawyer who tried a handsome celebrity for the murder of his wife eight years ago in L.A. After that devastating loss - and certain that a murderer went free - Maya retreated to Washington state, where she met a horse rancher and settled into a quiet life. Now, though, Sevvy Johnson, the high-profile celebrity played by Adewale Akinnuoye-Agbaje (who famously played Mr. Eko on Lost and more recently played Detective Bird on Ten Days in the Valley) appears to have killed another woman. It's enough to draw Maya out of retirement and back to L.A., where the D.A.'s office welcomes her back and asks her to head up this new case. Sevvy is a charming actor who has raised his children on his own. He was dating a young woman (best friend of his oldest daughter) named Jessica who worked as a personal trainer and recently showed up dead on the beach early one morning. Evidence - and suspicions - once again point to Sevvy, and this time, the D.A.'s office, and especially Maya, want to make sure he doesn't get away with murder. Sevvy's super-sleazy high-priced lawyer, Ezra Wolf, played by Scott Cohen, is confident he can once again win his case and keep his client a free man.

This legal thriller is fast-paced and twisty right out of the gate, with new surprises in every episode. Maya may be sure that Sevvy is guilty, but there is enough doubt planted - including his own tearful proclamations of innocence - to keep you guessing. And even if he is guilty, will he get away with it? In case you hadn't noticed the similarities and the role of Marcia Clark in the show's creation, there are definitely parallels here to the O.J. Simpson case. The cast is superb, especially Tunney and Akinnuoye-Agbaje in the lead roles. Both have been favorites of ours in their previous roles and are in top form here. The characters are well-developed, the dialogue is crisp and realistic, and the suspense is constant. We are watching about a dozen shows right now, but this one is at the top of our list, one of the few that we watch On Demand as soon as a new episode is available. We just finished watching episode 7 of 10, and we can't wait to see what happens next.

The Fix airs on ABC Mondays at 10 pm, and all episodes are available On Demand and on the ABC website (right now it looks like most are free though episodes 2 & 3 require your cable or satellite log-in). It is also available for streaming on Amazon for $1.99 an episode, and (I believe) on Hulu.