Tuesday, August 29, 2017

TV Tuesday: The Sinner

My husband and I have been enjoying a new TV show on USA Network called The Sinner, a dark & suspenseful thriller (based on a novel by the same name) with lots of unexpected twists.

Jessica Biel plays Cora, a young mom who seems perfectly normal and happy at the start of the first episode. We see Cora working in her husband's family's business and going home to her husband, Mason (played by Christopher Abbott), and their adorable little boy, Laine. If there is any tension in her life, it is maybe due to a slightly overbearing mother-in-law who lives next door. On Saturday, Cora and Mason decide to take Laine to the beach at a local lake.

At the beach, we begin to see some oddities with Cora. She swims way out into the lake, scaring her husband. But, back onshore, with her sweet son playing in the sand, things get really crazy when Cora suddenly attacks a man on the blanket in front of them, stabbing him repeatedly.The police come to the gruesome scene and arrest Cora, but she has no idea why she did what she did. She remembers attacking the man but doesn't know why she did it. She seems as horrified at her violent behavior as everyone else.

Detective Harry Ambrose, played by Bill Pullman, takes a special interest in Cora. He is intrigued by her case, and while everyone else is happy to just let her plead guilty and go to prison, he feels compelled to find out why Cora did what she did. Harry has problems of his own, including a crumbling marriage and an unusual relationship on the side, and he becomes obsessed with Cora's case and keeps digging into her background. Bit by bit, he discovers tiny clues to Cora's past that might possibly provide some explanation for her current behavior. Meanwhile, the viewers see flashback scenes of Cora's very screwed up childhood with religious fanatic parents.

We have watched the four episodes that have aired so far, and eagerly await the next one. There is plenty of suspense in this dark drama, even though you know from the start that Cora committed the crime. Detective Ambrose carries you along in his quest to uncover Cora's secrets, things that even she doesn't remember. Both Jessica Biel and Bill Pullman are excellent in their roles, giving very compelling performances as two people haunted in different ways. This dark, creepy psychological thriller has us both anxiously awaiting each new episode.

The Sinners is currently airing on USA Network. Episode 5 airs tomorrow, and there will be eight episodes in all of this "limited series." You can see all episodes On Demand, free on the USA Network's website, or on Amazon, starting at $1.99 an episode or $14.99 for the entire season....or you can read the novel!


Monday, August 28, 2017

Movie Monday: Going in Style

My husband and I have been on a movie streak lately, seeing great movies every week, so I have some catching to do with reviews. A few weeks back, we watched Going in Style, a fun, heartwarming comedy with an all-star cast.

Michael Caine, Morgan Freeman, and Alan Arkin star as life-long friends Joe, Willie, and Albert. The three men are retired and enjoying a quiet life. Willie and Albert share a house together, and Joe lives across the street with his daughter and grand-daughter. They play cards, meet at their favorite diner for coffee, and bowl together. They all worked for the same company which suddenly announces that its pension fund will no longer be funded. All three men depend on their pension checks, and Joe is even in danger of losing the house his family lives in.

While Joe is in the bank to find out why his mortgage payments keep going up, a robbery takes place. The group that pulls it off are professionals, wearing masks and waving guns but getting out with the money without anyone getting hurt. Joe gets the brilliant idea that he, Willie, and Albert should rob the bank where their pension fund resided, just to get back the amounts that were promised to them. Willie and Albert laugh him off at first, but as their funds dry up and things become more desperate, the three senior citizens get serious about pulling off a bank heist, even consulting with a local criminal for advice.

It's a silly premise, but it's not an entirely silly movie. There are plenty of laughs here (the scene of them gaining some experience by attempting to rob their local grocery store is hilarious), but there is also family drama, romance, and the warm and touching relationships between the three old friends. I would watch any of the three of these Hollywood legends in just about anything, and Caine, Freeman, and Arkin are wonderful here together. To give you an idea of their on-screen chemistry, just check out this very funny clip of their "interview" on the Today show (they spend all their time bickering and don't let Matt ask any questions!):

They mention in the interview that the final script was beefed up to add more depth than the original script had, and that is obvious. Going in Style is an entertaining and poignant movie. It's warm and funny, and the three legendary actors are a lot of fun to watch together.

Going in Style is now out on DVD. You can stream it on Amazon starting at $4.99 (link below).

Sunday, August 27, 2017

Weekly Inspiration: The Joy of Reading

One of the chapters in my book combines the subject of both of my blogs--chronic illness and book. It's called The Joy of Reading, with tips on enjoying books for those with ME/CFS and other chronic illnesses, including some ideas for those who have difficulty reading due to cognitive or vision problems. The article also includes LOTS of recommendations for great books I have enjoyed (most are older so will be inexpensive or available through your library), and tips on connecting with others who like to read, even if you're homebound.

Reading brings a lot of joy to my everyday life. Even when things seem out of control and I am overloaded (like lately!), there is time for books built into my day. I read for an hour before bed at night, with my husband next to me (also reading), and I read for a short time before my nap to help me relax. Reading fiction can allow you to escape your present circumstances and immerse yourself in another world, while nonfiction can inform, inspire, and even provide hope and comfort.

In addition to this blog, I have also written a book blog since 2007. It is called Book By Book, and you can visit it at the link. I write reviews of books I've enjoyed, as well as reviews of TV and movies. I also post photographs related to nature and travel and some food-related posts as well.

Do you like to read? Are you still able to read with ME/CFS? I hope some of the tips I've offered in the chapter will help you enjoy books even more (or perhaps for the first time since getting sick!) and also provide some ways to connect with other readers and book lovers to ease the isolation of living with chronic illness.

Tell me what you are reading right now! I love to talk books.

Here's an earlier version of the chapter in my book, originally published on the ProHealth website:

The Joy of Reading

Books can provide a lot of things to readers: comfort, information, inspiration, and just plain pleasure! Cognitive dysfunction (aka brain fog) makes reading difficult or impossible for some with ME/CFS, fibromyalgia, and tick-borne infections like Lyme disease, but there are some ways around that. Whether you have given up reading due to these difficulties or can still enjoy reading, there are many ways that books can bring joy into your life.

I have been an avid reader since the days of Dr. Seuss and Nancy Drew. When I got ME/CFS 15 years ago, books became a huge comfort to me, a way to escape the constant struggles in my daily life. They were one of the few joys left for me during my darkest years.

I realized that despite all of the restrictions in my life, I could still read (and I was grateful for that, knowing some can’t). I built on that love of reading with book groups, a blog about books, and online interactions with other readers. All of that is now a big part of my life and something that brings me tremendous joy.

Here are some ways that books can bring you joy and enrich your life, too:

Try Audio Books

Many people with chronic illness who can no longer read on their own find that they can still enjoy audio books. With eyes closed and reclining comfortably, you may be able to better take in information by listening rather than trying to translate written words on a page with symptoms of cognitive dysfunction. You can also enjoy audio books with a friend, partner, or family member.

Though there are still some audio books on CDs, most are now digital downloads. Simply download a book onto your iPod, phone, tablet, or other device and start listening. Try downloading audio books from sources like Audible.com, Audiobooks.com, and Libro.fm, which helps to support independent bookstores. With these services, you either purchase a monthly subscription or buy individual audio books, and many of them offer your first download(s) for free. For more free audio books, check out your library (most still offer audios on CD as well as digital downloads) or websites like Loyalbooks.com, and Librivox.org. Audiobooksync.com offers two free audiobooks each week throughout the summer every year.

Here are some outstanding audio books you might enjoy:

  • Lillian Boxfish Takes a Walk by Katharine Rooney – Based on a real-life woman, this novel takes place on New Year’s Eve 1984, as 85-year old Lillian walks all over Manhattan and remembers her long life there.
  • Celine by Peter Heller – An intriguing mystery starring 69-year old Celine, a PI specializing in reuniting families, who carries her own family secrets.
  • Anne Frank Remembered: The Story of the Woman Who Helped to Hide the Frank Family by Miep Gies with Alison Leslie Gold – The narrator makes you feel as if you are hearing this riveting story first-hand in this moving memoir.
  • Rebecca by Daphne Du Maurier – This classic Gothic novel is wonderful on audio, with the narrator bringing out the creepy, mysterious vibe that makes this story so compelling. This was one of my free audio downloads from SYNC (as was Anne Frank Remembered).
Try Young Adult or Middle-Grade Books

If cognitive dysfunction prevents you from following complex narratives, then consider books written for teens/young adults (YA) or middle-grade (MG) readers. These books are often easier to follow and shorter, but many of them are just as engaging. Some to try (all of these are excellent on audio):
  • Unbecoming by Jenny Downham – YA novel with incredible emotional depth, as three generations of women (a teen girl, her mother, and her grandmother who has dementia) struggle with their identities and their relationships with each other.
  • Pax by Sara Pennypacker – MG novel about a fox raised by a boy and how he struggles to find his friend when they are separated. Warm with plenty of suspense and adventure.
  • The Big Dark by Rodman Philbrick – MG novel for those who enjoy post-apocalyptic fiction. A massive power outage affects the entire world as a young boy in New Hampshire copes with his community’s fear and anger and tries to save his mother.
  • The Deadly Sister by Eliot Schrefer – For mystery and thriller fans, this YA novel is fast-paced with plenty of surprise twists and also looks at what it means to be family.
  • Chasing Lincoln’s Killer by James L. Swanson – If you prefer nonfiction, there are often MG or YA versions of popular adult nonfiction titles, like this YA version of Swanson’s best-selling Manhunt: The 12-Day Chase for Lincoln’s Killer. Shorter and simpler than the adult book, it is still a compelling, fascinating story.
Read for Inspiration

Books can also be a great source of inspiration, especially when you are struggling with the realities of chronic illness. Here are some wonderful books to turn to for inspiration, in either print or on audio:
Join a Book Group, in Person or Online

About five years into my illness, I joined my neighborhood book group. I wasn’t sure I had the stamina for it, but I loved to read and was desperate for some social interaction. I later joined another book group at a local Unitarian church. I still belong to both of those groups, and the experience has enriched my life. I have enjoyed books that I never would have chosen on my own. I also love being able to discuss a book after I read it.

If you can’t manage an in-person book club, try one online. I started my own online family book group a few years ago, with my far-flung cousins and aunts. We use a Facebook group and take turns choosing the next book. It can be challenging to keep discussion going online, but it can work with a little effort. I also belong to an ME/CFS Book Club on Facebook that is very low-key – you read the books you are able to and take part in discussions when you can.

To find a local book group, check with friends, family, neighbors, and your local libraries, bookstores, and churches. If you can’t find one, start your own! Online: try searching for ‘online book group’ (or club) and ask friends and family, as well as people with your illness that you interact with online. I have seen some book discussions within chronic illness discussion forums, as well as on Facebook and Twitter.

Use Books to Connect with Others

You don’t have to belong to a book group to connect with other people through books. Visit book blogs online and leave comments. Post on Facebook “What Are You Reading?” to engage your friends and family in discussions about books. Join Goodreads or Litsy to see what others are reading. On Twitter, use the hashtag #FridayReads to post what you are reading.

In real life, ask your friends and family what they are reading and tell them about books you’ve enjoyed. Books provide a way to connect with and relate to healthy people. Read aloud to a child in your life (even if they are old enough to read on their own) to get closer and build happy memories together – or ask them to read to you!

With all the limitations in a life of chronic illness, you can still find joy in books and in talking to others about what they are reading. If you are unable to read the books you used to enjoy, try audio books and/or books written for a younger audience. Use your love of reading to connect with others, and your life will be enriched by the books themselves and the relationships you build and strengthen.
Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

Saturday, August 26, 2017

Video Presentations for ME/CFS Symposium at Stanford

I posted a couple of weeks ago about an exciting all-day symposium being held at Stanford University and hosted by Open Medicine Foundation: Community Symposium on the Molecular Basis of ME/CFS. The agenda was packed full of top doctors and scientists and from all accounts, it was an excellent day with some very informative and interesting presentations.

The entire day was recorded and is now available on YouTube at this link.

It's 8 hours of video, so here is an outline, with time stamps for the video, in case you want to pick and choose which parts you watch:
Introduction & Welcome: Linda Tannenbaum and Ashley Haugen (00:10)

Opening Remarks: Ron Davis: (00:14)

Morning speakers:

Robert Naviaux: The metabolism of the cell danger response, healing, and ME/CFS (00:18)
Chris Armstrong: ME, metabolism and I (00:38)
Jonas Bergquist: In search of biomarkers revealing pathophysiology in a Swedish ME/CFS patient cohort (00:53)
Maureen Hanson: Probing metabolism in ME/CFS (01:46)
Neil McGregor: Genome-wide analysis & metaboleme changes in ME/CFS (02:05)
Alan Light: Gene variants, mitochondria & autoimmunity in ME/CFS (02:21)
Panel discussion: Morning speakers (02:42)

Afternoon speakers:

Baldomero Olivers: A novel source of drugs: the biodiversity of oceans (04:37)
Mario Capecchi; The role of microglia in neuropsychiatric disorders (04:57)
Mark Davis: Is CFS/ME an autoimmune disease? (05:14)
Alain Moreau: New research strategies for decoding ME/CFS to improve diagnosis and treatment (06:06)
Wenzhong Xiao: Big data analysis of patient studies of ME/CFS (06:25)
Ron Davis: Establishing new mechanistic and diagnostic paradigms for ME/CFS (06:44)
Panel discussion: afternoon speakers (07:21)

Closing remarks: (08:03)
I need to find time to watch some of these myself! Hopefully, things will quiet down a bit now for me (and I will be able to post to the blog more regularly) with my sons back in college for the fall.

If you watch some of these presentations, please leave comments below regarding what you found interesting or enlightening and which presentations you'd recommend that others watch.

Sunday, August 20, 2017

Weekly Inspiration: Bored and Brilliant

The title of this TED Talk caught my eye in my weekly TED e-mail: How Boredom Can Lead To Your Most Brilliant Ideas. It caught my eye because I am NEVER bored anymore. I am the ultimate multi-tasker (even though I have heard the research that we are less efficient when trying to do multiple things at once), if I am not on my laptop, then I am listening to books or podcasts on my iPod, and for the past year or so, it has felt to me like I have NO free time, like every single minute is packed full.

This brief talk, by Manoush Zomorodi, is excellent - not only thought-provoking but also funny:

The interesting thing for me is that Manoush's talk focuses on how people today are so controlled by their phones...and even though I don't even own a smartphone (gasp!), everything she said is still applicable to me. Because technology does rule my life, and I never give myself quiet time to just think. In fact, everything she says here is a big part of the reason WHY I don't have a smartphone (besides the outrageous price of phones & data plans) - I know I am already too connected too much of the time, and it would certainly get worse if I had everything on my laptop on a hand-held phone that I carried with me everywhere.

The funny thing is, though, that the end result is the same. I spend much of my waking hours on my laptop. Some of that is work - writing - with all my social media windows closed and my focus 100% on what I am doing. But, much of my daily time with my laptop is spent going through e-mails (I never seem to catch up!), reading and/or posting on social media, and generally - as Manoush points out - filling every available moment with technology. During those boring tasks that can free your mind that she mentions - walking, driving, doing laundry or dishes - I almost always have an earbud in my ear, with an audiobook or podcast broadcasting directly into my mind. Don't get me wrong - I get a lot of enjoyment from audiobooks and podcasts - but I am not leaving myself any quiet time.

I suspect it is the same for many of us living with chronic illness. Even though we are often housebound, and some are bedridden, technology makes it possible to stay connected 24/7 for all but the worst off. I know of many people with chronic illness who are constantly posting on social media (I know because I am reading all those posts! And posting my own). Granted, the ability to connect with others online is hugely important to those of us who can't go out much and used to live with such loneliness and isolation...but it can get to the point where we are never bored or quiet.

I do block out tech-free time for myself every day to read and watch TV with my husband (and to nap and sleep, of course). I set a laptop limit for myself years ago and set it aside by 7:30 pm every evening (though it used to be 7 pm!), and my husband and I watch two TV shows together. I'm pretty wiped out by then anyway and need to lie down, plus we enjoy that time together to immerse ourselves in our favorite shows. We turn off the TV at 9:30 every night and go up to bed, where we spend an hour reading. That evening time is certainly a wonderful break from technology, though my mind is still fully occupied - with TV and then with my book. I don't have any moments of boredom or quiet in my days.

I do occasionally experience a complete technology break. In the talk, Manoush describes an experiment to help people spend less time on their phones. When we vacation, we take our camper and are off-line. Since I don't have a smartphone, the break is pretty complete: I will check for texts or calls on my regular cell phone from my kids or my father-in-law, but otherwise, we spend our time reading, taking walks, kayaking, and even sitting around the campfire at night just talking or watching the fire. I have to admit, I feel a little bit lost the first day or two and find myself thinking I need to post something, but that fades quickly, and I enjoy the lack of pressure and the presence of quiet time. My problem is that I need to find ways to incorporate a little quiet time into my everyday life and not just a few times a year on vacation.

What do you think? Are you constantly online or on your phone? Are you ever bored? And how about Manoush's hypothesis: do you find that you come up with creative ideas when you ARE bored?

I'd love to hear your thoughts in the comments below. I know I definitely need to make some changes!

Manoush Zomorodi has also written a book about her experiment and this concept:

Friday, August 18, 2017

Take Action Now to Restore ME/CFS Funding at CDC

CDC Headquarters in Georgia
Most Americans with ME/CFS and other chronic illnesses breathed a big sigh of relief this month when Congress' efforts to repeal the Affordable Care Act (ACA) failed, and we will - for now - hang onto our rights as those with pre-existing conditions and retain some (though not perfect) access to health insurance.

You can't breathe easy yet, though, because we now have another, familiar threat to ME/CFS in the federal government: the House Appropriations Subcommittee on Labor-HHS zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC....again. Yup, that's right, even that meager and insufficient little $5 million we get for research in the CDC (far, far below what other similar diseases get) is in danger of being yanked away completely. If this seems familiar to you, it's because this happened exactly 2 years ago, in August 2015, and ME/CFS patients and advocates spoke up and successfully got our little $5 million reinstated to the budget.

So, it is time once again for your voices to be heard! No need to run to the rooftops and shout, "We Are Here! We Are Here!" - unlike the Whos, we have the internet.

Just take a few minutes to fill out this quick form and hit send, and an e-mail letter will be sent to your Congressional reps. I just did it, and it took me 5 minutes from start to finish (and I added a fairly detailed message about our family and dozens of other families locally).

Use this link from Solve ME/CFS to send your message NOW, while we still have a chance to get this reversed.

Tuesday, August 15, 2017

TV Tuesday: Gypsy

Another TV show my husband and I have been enjoying this summer on Netflix is Gypsy, an original drama about a therapist who gets too involved in her patients' lives. It's intriguing, with a slightly dark and creepy feel to it that leaves you constantly wondering what's going to happen next.

Naomi Watts plays Jean, a wife and mother who works as a therapist and seems to have a good life. She and her husband, Michael, played by Billy Crudup, live in a large and lovely suburban home with their daughter, Dolly, who is struggling with some gender issues (well, she's not struggling - she thinks of herself as a boy and is happy that way, but everyone around her is struggling with it!). Jean commutes into NYC on the train and works as a therapist, in private practice but consulting with a small group of other therapists. Michael also works in the city as a lawyer, and he and Jean seem to have a decent relationship.

What Michael doesn't know is that Jean makes a habit of lying and sneaking around and getting WAY too involved in her patients' lives. In the first episode, we see her meet with her patient, Sam, a youngish man who is having trouble getting over his ex-girlfriend, Sidney. He mentions that Sidney is a barista at a nearby coffee shop, and soon Jean is hanging out at the coffee shop, introducing herself to Sidney as Diane and befriending her, though it seems that Sidney may be interested in "Diane" as more than just as a friend. Remember, this is Jean's patient's ex-girlfriend! Another patient, Claire, played by Brenda Vacarro, is estranged from her grown daughter, and before long, Jean is seeking out the daughter to see their relationship from her perspective. She just can't seem to stop from inserting herself - secretly - into her patients' lives. Interestingly, Jean actually seems like a decent therapist - caring, thoughtful, and often helpful - though you know her creepy habits can't end well.

As Jean follows various people or meets up with Sidney or Claire's daughter or other people related to patients, she has to keep lying to her husband, her friends, and her co-workers to cover her tracks. In Sidney's case, since Jean is kind of attracted to the younger woman and enjoys stepping into her alter ego, Diane, that she created, these lies and secret running around (often in the middle of the night) become more and more convoluted.

Gypsy (Stevie Nicks recorded an acoustic version of the iconic song for the show's theme) has an unusual tone. It's a drama - sometimes about Jean and her family, sometimes about her patients - but it has a dark, slightly creepy undertone. The more that Jean lies and the more deeply she gets involved with her (unwitting) patients' lives, the more tension builds, as it seems inevitable that she will get caught out sooner or later. Sometimes, what she's doing seems downright dangerous, as with Sidney's alluring and manipulative advances, or visiting a patient who lives in a bad part of town with an abusive boyfriend. So, although I wouldn't call it a thriller, there is a growing feeling of suspense and dread. You want to keep watching to find out what happens, even as you feel an urge to cover your eyes or yell at Jean to watch out! Naomi Watts is brilliant as Jean, switching to these different personas she adopts when she's pretending to be someone else and capturing Jean's underlying feelings of discontent beneath her normal-seeming exterior.

We have watched six of Gypsy's ten episodes in its first season. As a Netflix original show, it is available exclusively on Netflix.

Monday, August 14, 2017

Movie Monday: The Circle

We've really been on a movie roll lately, seeing so many movies I can barely keep up with reviews! We kind of go in streaks, depending on how many good TV shows are on at the time - late summer is always a lull. Our college-aged son was home sick last week, so to cheer him up, we rented a movie Saturday night that we've all been wanting to see: The Circle, starring Tom Hanks and Emma Watson. We all enjoyed this creepy movie about social media gone mad, based on a Dave Eggers novel by the same name.

Emma Watson plays Mae, a young twenty-something woman who is very sweet and a bit shy and devoted to her family. Her dad, played by Bill Paxton, has MS; her mom, played by Glenne Headley, takes care of him as his disease progresses; and Mae lives at home so she can help, too. At the start of the movie, Mae is working as an anonymous customer service rep in a dead-end job, until her best friend, Annie, suggests she apply for a job at The Circle, the huge tech/social media company where she works. Mae gets the job, and her life begins to change dramatically.

The sprawling campus of The Circle is similar to what I have heard the main headquarters for Google and Facebook are like, with employees using bikes in between buildings, beautiful landscaping, and all kinds of extras for employees, like parks and amphitheaters and play areas. Although she is still in customer service, Mae's job is much different, too, with constant electronic monitoring and a spiffy grading system that gives her instantaneous feedback on her performance. Her co-workers are also very different - pleasant and welcoming, encouraging Mae to stop going home on the weekends and spend more time at The Circle in her off-hours, too. There are parties and live bands and more right there on campus.

Soon, Mae is swept up in life at The Circle and keeping in touch with her parents only through video chats. Her childhood friend, Mercer, doesn't approve of her new job or lifestyle - he prefers the simple, unconnected life. Mae is impressed when she meets the head of the company, Eamon Bailey, played by Tom Hanks, though she is beginning to get an inkling that all of this connectedness might have a downside. When Bailey asks her to take part in a social media experiment, though, and offers to include her parents and add them to the very generous company health plan, Mae is all in. As you might guess, things don't go quite as planned as the openness and connections the company touts are taken to new heights.

We all enjoyed this taut drama. It's suspenseful - not in a horror-story way but in a I-know-this-won't-turn-out-well way that makes it very compelling. Besides the growing tension, it is also an intelligent and thoughtful look at our own modern society and how our craze for sharing our lives 24/7 could easily get out of hand. Issues of privacy, ethics, and freedom are explored. And of course, the cast is excellent, especially Watson and Hanks. The Circle is a cautionary tale that is highly entertaining.

The Circle is now out on DVD and available to stream on Amazon, starting at $4.99.


Sunday, August 13, 2017

Weekly Inspiration: Find Your People!

You might have noticed the blog was pretty quiet this week, after Tuesday - that's because I poured all my time & energy into hosting a potluck dinner for our local ME/CFS (and related illnesses) group on Wednesday! I started the group seven years ago, but this is the first time we've hosted a gathering ourselves, and I was worried about managing it, but there was no cooking since everyone brought something (and we provided burgers and hot dogs and snacks and drinks) and my husband and two sons all helped a LOT. In fact, when everyone left at 8 pm (that's the up-side of socializing with others with chronic illness - they SO get my limits!), I felt a bit tired but mostly just incredibly satisfied and happy. These are my people!

In total Wednesday, from 4 - 8 pm, we had 7 sick adults, 3 sick teens/young adults, and 4 healthy parents/siblings/spouses (14 total, including us). Some have been with the group since its beginning seven years ago, others have been added through the years, and two families were new to our group and just meeting everyone for the first time. We have a couple dozen additional families in our local group who weren't able to make it this time. The great thing about getting together with others dealing with the same illnesses and issues is simply that they "get it." Everyone was making sure the ones with ME/CFS and OI were sitting down, we had plenty of salty snacks, foods were labeled for those with dietary restrictions, and you just know that everyone else understands your limits without you having to say a word. When we get together like this, it is about 50% socializing and about 50% helping each other, with tips on local doctors, treatments that help, diagnoses to consider, etc. It's an incredibly warm and supportive environment. ME/CFS and other similar illnesses can be so isolating that finding other people going through exactly what you are going through is an incredible experience - and definitely inspiring.

How We Got Started & Evolved
Just in case you haven't been reading every blog post here for the past 7 years (!), I'll give you a little background on how we got started. Back in 2010, when both of my sons had ME/CFS (and me, too), I kept hearing about other kids in our area who also had it. I found out about these other families through a wide variety of means and talked or met up with some of them, but at one point I thought, I'm meeting each of them, but they haven't met each other! So, I arranged a lunch meeting at a local restaurant, and five moms from the surrounding region (here in tiny Delaware that means some came from PA and some from MD or NJ) came. That first meeting was a mind-blowing experience for all of us, and we decided that our families had to meet, too. You can read all about that first meeting - including how I found these other parents, in my post, Birds of a Feather.
Adults at our first family gathering

We followed up that first meeting with a second "Mom's lunch," and some of our kids came along this time to meet each other. This was another huge success, both for the parents and the teens. You can read all about it in my post CFS Mom's Lunch. By then, us moms were good friends, and our kids got along well, so one mom offered to host a backyard barbecue the following month. This was another amazing event, with all the kids present and the dads finally able to meet the other families, too. I wrote about it in Local CFS Picnic a Huge Success!  On the way home that night, our own sons were very enthusiastic and asked when we could do it again.

And so, our local group was formed. Seven years later, I now have 36 Party for Chronically Ill Kids, explains how just the opposite is true, and how freeing and fun it is for these kids (and adults!) to hang out together.
people on my local e-mail list, and we get together several times a year for weekday lunches at a restaurant or potluck dinners in someone's home for the whole family. The group is no longer just families with sick kids; plenty of sick adults are now a part of it, too. Our original families are still an active part of the group (though one family moved). Some people never miss a gathering, some come when they can, some have never been to a gathering, and some are housebound and can't come...but they are all on the e-mail list and appreciate being connected with others in the local area even in that limited way - to know they are not alone. And lest you think these gatherings of sick people are boring and depressing, this post,

Kids & teens at one of our lunches
How You Can Find Others Locally
As you can probably tell, our local group is not a typical support group, where you meet one Saturday a month in a library or church to sit in a circle and talk about your illness. In fact, where I live, in Delaware, I know of three support groups like that - they all eventually fizzled out and no longer meet. I can't claim any great wisdom in doing this differently - it just sort of happened this way naturally! As you can see, our group is more social, while still providing support and helping each other. We have become good friends over the years, and the new people who came to our house this week also said they felt comfortable and supported by friends in our group, at their very first gathering. We keep the vibe low-key and friendly, but there is a LOT of important information that gets passed along when we get together, too.

You may not know anyone else locally with ME/CFS (or related illnesses like fibro, EDS, and Lyme), but - unfortunately - there are plenty of people in every region of the world just like you. The key is finding them, especially since most of us don't leave home very much. You can find others in a lot of different places, as I did - through your doctors, schools (in the case of sick kids & teens), mutual friends, and even online. This article I wrote for ProHealth, Birds of a Feather - The Joys of Community, provides lots of tips on how to find others, both online and locally.

Having a support network of friends who are dealing with the same challenges that you are is incredibly rewarding, both in terms of friendship and in terms of actionable information that can help to improve your health. These friendships we make - and continue to nurture - have enriched all of our lives.

So, get started and find your people!

Tuesday, August 08, 2017

TV Tuesday: The Bold Type

My son was home sick for about a week, so he and I reverted back to old habits - a paleo chocolate smoothie and an NCIS episode for lunch (and sometimes an extra Bob's Burgers episode if we're feeling wild). He went back to his apartment Sunday night, and I went back to my latest lunchtime girl-centric obsession: The Bold Type, a new show about three young career girls working for a fashion magazine, inspired by the life of Cosmopolitan editor-in-chief, Joanna Coles.

The magazine on the show is called Scarlet, but it's clear it is based on Cosmo, with a focus on modern, independent young women, with lots of flash and a reputation for plenty of sex. On the show, the editor-in-chief is the supremely confident, always fashionable Jacqueline Carlyle, played by Melora Hardin who played Jan on The Office. The show focuses mainly on three young women in their early 20's, just starting out in their adult lives and their careers.

Jane, played by Katie Stevens (who was apparently on season 9 of American Idol), is a staff writer at Scarlet. She's only recently been promoted to this position, and she desperately wants to be taken seriously as a writer, but she's worried she will get pigeon-holed into writing only about sex or fashion at Scarlet. No such luck yet for Sutton, played by Meghann Fahy, who is still toiling away as a lowly assistant, fetching nonstop green juices for a grumpy, demanding senior editor. Sutton has always dreamed of working in fashion, but she comes from moderate means and doesn't have the credentials. She's also secretly dating Richard, a young man who works in the corporate offices of the magazine's parent company. Kat, played by Aisha Dee, rounds out the trio. Kat has worked for Scarlet for the past couple of years as their social media coordinator, wrangling Instagram, Twitter, and the other platforms to help keep Scarlet's readers engaged.

These three bright, ambitious young woman are trying their best to move forward in their careers, while dealing with all the usual drama of the early 20's. I've found it refreshing that these characters are all well-rounded, complex, and interesting - no worn-out stereotypes here. They are also - the three main characters as well as their high-powered boss - all intelligent and ambitious without being portrayed as bitches. Hallelujah! In fact, they're all kind as well as smart. It's about time. The young actresses perfectly capture the conflict of trying to appear confident and bold when you are actually very unsure of yourself on the inside.

In addition, the show deals with some important and engaging topics. Yes, there is plenty of frank sex talk - this is, after all, meant to be Cosmo - but the show tackles a lot more than that, too. And even its sex-related topics are things that aren't usually discussed openly, like when Jane is assigned to write the monthly sex column on how to have the best orgasm, and she confides to her friends that she's never had one. Recent episodes have dealt with online bullying and shaming, racial profiling, and sexual identity.

I've watched four episodes so far (#6 airs tonight), and I'm enjoying it very much. It's full of life, joy, and love but also deals with serious issues. I also like the behind-the-scenes view of working for a big magazine (as both a writer myself and a lover of magazines). It's kind of like a modern version of Good Girls Revolt (a fabulous show on Amazon set in 1969), and it's exciting to see smart, young women getting these kinds of roles for younger girls to watch on TV and emulate. I suppose this show is probably aimed at a younger audience, but I am in my 50's and I'm enjoying it!

The Bold Type is currently airing on Freeform (formerly ABC Family), so you can watch it On Demand or you can find all episodes (free) on the Freeform website. It is also available through Amazon, for $1.99 an episode or $16.99 for the season (link below).

Monday, August 07, 2017

Movie Monday: War for the Planet of the Apes

Last week, my husband and I had a real date night treat: dinner out and a movie in the theater! Even better, we went to a theater that's been newly refurbished in our area that our son told us had real recliners. So amazing!! These theaters have been refitted with FULL recliners - the foot rests go all the way up, the backs lean back - ahhhh! Almost like being at home. For someone like me - very short and can't sit for long with my legs down due to medical problems with blood pressure & heart rate - this is a game-changer! I've been frustrated lately because lots of theaters are putting in new seats around here, but they are using huge seats with high seat backs and extra leg room. I'm too small to lean back comfortably in these giant seats, the way my husband does, and the wider space between aisles and high seat backs means I can't usually put my feet up anymore, either. I LOVED the new recliner theater and may not ever go anywhere else!

Oh, and the movie was good, too! I almost forgot, in my ecstasy over the recliners. We saw The War for the Planet of the Apes, the third and final prequel to the original Planet of the Apes movie (1968). My husband and I were big fans of the original movie, and our whole family has enjoyed these prequels. This one was just as good as its predecessors. If you haven't seen those yet, I highly recommend you go back and start at the beginning, with Rise of the Planet of the Apes and Dawn of the Planet of the Apes.

The War for the Planet of the Apes picks up where the last movie left off, with Caesar (the original intelligent chimpanzee who started this whole revolt) and his followers ensconced in the forest, trying to stay protected from the human armies that are trying to find them. Caesar has maintained his focus on peace (though the humans don't seem interested in that goal) and only fighting to defend themselves, never to attack the humans offensively. That all changes when a defector leads the human armies to the apes' secret cave hideouts, and Caesar (and many others) suffers a horrific loss. Once the humans have been fought off, Caesar knows that his first priority must be to get the remaining members of his group to safety and find a new hiding spot, but he is personally bent on revenge now as well.

Caesar sends the community on a journey to a new safe place they've heard about, while he and a few loyal followers head off in another direction, tracking the human army - and especially a ruthless man known as The Colonel, played by Woody Harrelson. Along the way, they pick up a deaf human girl, whom they name Nova, played wonderfully by Amiah Miller, and another ape who can talk, who thinks his name is Bad Ape because he grew up in a zoo and is voiced hilariously by Steve Zahn. The small group makes their way through snowy mountains until they find the abandoned armory (that was later used as a quarantine facility) to face off against The Colonel. The humans have plenty of high-powered weapons at their disposal here, though, so the odds are against the apes...but hey, all of this is leading to The Planet of the Apes, so we know how it ends, right?

Like the previous two prequels, this movie was filled with action and suspense that kept us glued to the screen (that and those wonderful recliners). Also like its predecessors, this film is also filled with warmth, poignancy, and plenty of humor, which is why I enjoy these movies so much. Ironically, there is plenty of human drama among the primates. Since this is the last prequel, it was also fun drawing the lines between this movie and what we know happens in The Planet of the Apes. For instance, when the group names the little girl Nova, I remembered there was a human female in the original movie named Nova. We both enjoyed this latest addition to the saga very much. Now, we are thinking of watching the 2001 remake of The Planet of the Apes, to come full-circle (and since neither of us has seen the remake yet).

The War of the Planet of the Apes is now playing in theaters. You can purchase tickets ahead of time through Fandango - Know Before You Go! Buy Movie Tickets in Advance. (look for a recliner theater near you!). The first two prequels, Rise of the Planet of the Apes and Dawn of the Planet of the Apes (both highly recommended) are available for streaming through Amazon, starting at $2.99 or on DVD through Netflix or Amazon.

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

First two links below are for streaming, starting at $2.99 each (regardless of what price the link shows) and the last three links are for inexpensive DVDs:


Sunday, August 06, 2017

Weekly Inspiration: Living As Usual

I recently read The Handmaid's Tale by Margaret Atwood for the first time...finally! (my review is at the link) Both Margaret Atwood and her renowned dystopian novel had been on my must-read list forever, and I was thrilled to get to it. Many people read The Handmaid's Tale in school (I am a bit too old for that; it came out in 1985), and the book has recently enjoyed a resurgence on the best-seller list, thanks in part to a new Hulu TV series based on it (which I heard is amazing) and in part to the current state of affairs in the world (many dystopian classics have been on the best-seller list recently).

I always find inspiration in the books I read, as I mentioned in my recent article The Joy of Reading, published on the ProHealth website (that article also includes tips for those who struggle to read due to cognitive function, plus lots of book recommendations!). I keep a Quote Journal to jot down quotes from books that I relate to or find inspiring or thought-provoking.

This was my favorite quote from The Handmaid's Tale:
"Is that how we lived, then? But we lived as usual. Everyone does, most of the time. Whatever is going on is as usual. Even this is as usual, now.

We lived, as usual, by ignoring. Ignoring isn't the same as ignorance, you have to work at it."
          - from The Handmaid's Tale by Margaret Atwood

This passage struck me for two different reasons. The first half of it speaks to life with chronic illness - as extreme and horrific as it seems at first, we eventually gets used to it, and it becomes our new normal - life as usual. Human beings can get used to anything. In many ways, that helps us to live with chronic illness, to accept our new, restricted lives, and to move forward in a new life now defined by limitations (when you think of it like that, it's not too different from Offred's life in the novel!). The potential downside is that you might forget there are any other options and be so accepting that you stop trying new treatments, reading about new research developments, and recognizing that there is a possibility of a better life ahead for you. I have found that a truly healthy life with chronic illness requires a careful balance between acceptance and hope.

The second way this passage affected me was the way that it was intended: that last line goes right to the heart of both Offred's world and our own. Ignoring the small changes happening in society - the steady chipping away of freedom and tolerance - can eventually lead to huge, horrific changes. Ignorance - not knowing what is going on - is perhaps a valid excuse, but ignoring is something else entirely. It is very easy for each citizen to simply keep living his or her own life - as usual - while ignoring what is happening in the wider world, but that kind of ignoring can have serious consequences. I have been reading a lot of WWII fiction lately, and that is a recurrent theme - how ordinary citizens ignored what was happening to others, until it was too late. It's a brilliant and very thought-provoking sentence that stopped me in my tracks.

Just for fun (there's not a lot of fun in The Handmaid's Tale), I enjoyed another quote because I have a bit of a magazine obsession, and this passage is all about magazines, when Offred sees an old glossy magazine in a world where they no longer exist:
"What was in them was promise. They dealt in transformations; they suggested an endless series of possibilities, extending like reflections in two mirrors set facing one another, stretching on, replica after replica, to the vanishing point. They suggested one adventure after another, one wardrobe after another, one improvement after another, one man after another. They suggested  rejuvenation, pain overcome and transcended endless love. The real promise in them was immortality."
                    - from The Handmaid's Tale by Margaret Atwood

I rarely have time to read magazines at home, but when we go on a road trip (as we often do with our camper), I bring a stack of magazines with me and happily flip through them in the passenger seat. I can't read books in the car because I get car sick, but I can look through magazines (frequently glancing up to look at the horizon!). I love Offred's musings on what makes magazines so enticing. I think part of what I like is just that it feels to lazy and decadent, a treat I rarely have time for. With my time and energy so limited at home, I always feel pressure to be productive when I am not resting - to get as much done as possible in my very restrictive life. But in the car with my magazines, I am free and can sit there doing nothing productive, gazing into other people's lives, with no guilt at all.

Have you read The Handmaid's Tale? Do you find books inspiring and thought-provoking? Most importantly, do you like magazines? (ha ha)

Hope you are enjoying a relaxing weekend!

Friday, August 04, 2017

ME/CFS Symposium Sponsored by Open Medicine Foundation

The Open Medicine Foundation (OMF), the renowned ME/CFS Research Center at Stanford University in California, is hosting a Community Symposium on the Molecular Basis of ME/CFS on Saturday, August 12, 2017. This exciting scientific update for patients and other interested parties will follow a two-day meeting of OMF's huge team of top ME/CFS research scientists, many of them rock stars in the ME/CFS world! You can read details of the Symposium at the link.

Anyone is welcome to take part in the symposium in one of two ways:
1. If you are in California or can travel to the site, you can attend the 1-day symposium in person - there's a button at the bottom of the Symposium page to register.

2. Everyone else can register for the Livestream of the Symposium, so you can watch all the presentations from home (or wherever you are!).
NOTE: The folks at OMF told me that they understand most patients can't watch the Livestream all day, but you can check the agenda at the link to see which speakers you would like to tune in for. They will also be recording the entire day and will either offer a DVD or post the presentations on Youtube (maybe both) after the symposium.

The Symposium is scheduled for next Saturday, August 12, so register today for attending the event or watching it via Livestream! I've already heard from lots of patients (and parents of patients) who are planning to participate.

Tuesday, August 01, 2017

TV Tuesday: Ozark

In need of a new show to watch in the end-of-summer TV lull, my husband and I watched the first episode of Ozark, a new Netflix show, last week and immediately watched the second episode, too! That trend has continued this week - we are totally addicted to this unique, suspenseful, poignant, funny show filled with movie-star talent.

Jason Bateman plays Marty Byrde, a seemingly mild-mannered (some might say dull) financial planner in Chicago. Marty normally lives a quiet life, but in the first episode, that gets blown away in a single day. First, he finds out his wife, played by Laura Linney, has been cheating on him, and then he's called out in the middle of the night to answer to Del, the scary head of a Mexican drug cartel, about missing money. It turns out that Marty and his partner, Bruce, have been laundering money for the cartel, and Bruce has been skimming some off. Marty barely saves his own life and his family's lives by convincing Del that he can continue to launder his money from a new location, Lake of the Ozarks in Missouri (this involves some fast-talking and total BS on Marty's part, after Bruce had given him an Ozarks brochure earlier in the day). Del says that Marty and his family must be out of Chicago and settled down there within 48 hours.

And that's where this family's adventure - and nightmare - begins! Marty rushes home and tells his (cheating) wife, Wendy, everything, the house is on the market by morning, and their poor kids - 15-year old Charlotte and younger brother Jonah - are suddenly ripped from their lives and into a stuffed family van heading to Missouri. They arrive to find a depressed region filled with rednecks that relies heavily on summer tourist money. Marty immediately sets out to find cash-based businesses to launder the drug money through, but no one wants anything to do with this fast-talking stranger, until he finally stumbles onto a run-down old summer resort that has seen better days and whose owner is just desperate enough to buy Marty's story of being an "angel investor."

That's the basic set-up, but every episode of Ozark is just chock-full of twists, turns, and surprises, as the Byrde family begins to settle into their new home and Marty struggles to keep his family not only financially afloat but alive. One of the best aspects of the show is the local family of hicks known as the Langmores, who butt up against the Byrdes right from day one. With her father in prison, nineteen-year old Ruth Langmore, played by the brilliant Julia Garner, heads up the ragtag family. She is far more intelligent than her uncles and cousins and also hardened from growing up in the midst of a criminal family. Before long, Ruth worms her way into Marty's business, though her intentions are far from noble. Throw in a local drug business that sees Marty as a threat, a preacher on the water, a dying man in the Byrde's new basement, and an FBI agent hot on Marty's trail, and you have a gloriously tangled and constantly changing plot!

We have watched seven episodes so far of the 10-episode first season (oh, no - only three more to go!), and we are completely hooked on this original show. The actors are all first-rate and completely inhabit their characters. The plot is constantly moving, with surprises in every episode - sometimes the good guys become the bad guys in an instant or the bad guys are suddenly allies! It's a unique and intriguing setting, with the gorgeous backdrop of Lake of the Ozarks and its wealthy summer tourists against the poverty of the locals. Despite its serious themes and nonstop suspense, the show also has a good sense of humor (often dark humor!) that we love and delves into the emotional lives of its characters, too. We are loving every minute of it (as are many of my friends) and hope there will be a season two! I can't wait for my husband to get home tonight so we can watch another episode.

Ozark is a Netflix original program, so it is available exclusively on Netflix.