Monday, March 30, 2020

Movie Monday: We Own the Night

Saturday night, my husband and I decided to have a wild night out. Just kidding, of course! We stayed in and got wild by watching a movie on TV and eating Paleo brownie sundaes. Do we know how to party or what? We were looking for a good mystery or thriller, so I was just looking up random movie titles on Amazon and Netflix from our "want-to-watch" list of almost 400 films! We ended up with a crime thriller from 2007, We Own the Night, starring Joaquin Phoenix and Mark Wahlberg. It was dark and suspenseful, with excellent acting.

Wahlberg plays Joseph Grusinsky, an NYPD officer in the 1980's who has just been promoted to Captain of the Narcotics Division. His father is NYPD Deputy Chief Burt Grusinsky, played by Robert Duvall, who congratulates him onstage at a big celebration. Joe's brother, Bobby, played by Joaquin Phoenix, took an entirely different path in life and now manages a successful night club, La Caribe. He uses an assumed name, Bobby Green, so no one knows that he's related to the NYPD's first family. Bobby does love his family, though, and he shows up for Joe's promotion party, bringing his girlfriend, Amada Juarez (played by Eva Mendes), to meet his family for the first time. The nightclub Bobby runs is owned by Marat Muzhayev, played by Moni Moshonov, who treats Bobby like a son and welcomes him into his family, where Bobby eats meals and plays with Marat's grandkids. Joe and his dad try to warn Bobby that his club is at the center of a huge drug ring they are trying to bust, and one of his top customers is running it. Bobby's not involved in the drug trade, though he does hang out with the guy in the middle of it, and he's stunned when his club is raided a few days later. Joe and his dad want Bobby to help inform on the drug ring, and at first, Bobby says no, until events escalate and he sees that his family is in danger from the Russian mafia. Then, all three Grusinsky men end up in the midst of a nightmarish drug war, up against powerful criminals, in a life or death battle.

Although the plot here is a little bit complicated, we had no trouble following it and were soon caught up in the suspenseful action. Bobby is a bit misguided, but you can see that he's a good guy, just having fun and living a life of freedom and parties. That all comes to an abrupt end when he realizes that his family is in danger; his loyalties are never in question. Phoenix brings his characteristic intensity to this role so that you can really feel Bobby's apathy, reluctance to get involved, and his love for both Amada and his family. The plot is filled with twists and turns that take you by surprise, and a growing sense of tension that grips you from beginning to end, all with a great 80's soundtrack in the background. True, this film is a bit dark, though it's not, as my husband first feared, one of those movies where everyone dies at the end! It's an action-packed crime thriller with surprising emotional depth and outstanding acting from an all-star cast.

We Own the Night is now available on IMDb TV, which we watched through Amazon (for free, with brief, limited ads).

Sunday, March 29, 2020

Weekly Inspiration: Finding a New Normal: Living Your Best Life with Chronic Illness

My new book, Finding a New Normal: Living Your Best Life with Chronic Illness, is now out in paperback (and is also still available as an e-book on all platforms), so I wanted to tell you more about it.

From the back cover:
"Whether you are in the early days of living with chronic illness or have been at it for years (or decades), there are always challenges in living a life framed by limitations and restrictions, where isolation is a common issue. This guide provides inspiration, advice on emotional coping, and guidance on living your best life with chronic illness from someone who’s been there. Though it seems impossible at first, your life will eventually settle into a new normal, and while that life may be different than the one you had planned, it can still be a vibrant, fulfilling life based on strong relationships, a healthy emotional state, and finding joy in every day. The emphasis in this book is on LIVING your life, not just enduring it."

And here is the full list of chapters:


Emotional Coping

Riding the Chronic Illness Rollercoaster                       
One Day at a Time                                                       
Balancing Hope and Acceptance   
What Are You Looking Forward To?            
Roll with the Punches                             
You’re Right Where You Need to Be      
Coming of Age with Chronic Illness        
How Has Chronic Illness Changed You?   
Spring Cleaning for Your Spirit          

Daily Life

Finding Joy in Every Day                    
A Plan B Day                        
The Restorative Power of Nature    
What Makes You Forget?      
Reading Expands Your World  
The Importance of Play         
Celebrate Everything, Big and Small! 
Summertime … and the Livin’ Is Easy (Or Is It?)
Travel Tips for the Chronically Ill 


Who Do You Tell and What Do You Say? 
Staying Connected with Friends While Ill
The Hidden World of Invisible Suffering
Has Chronic Illness Turned Me into an Introvert?
The Challenges of Being a Sick Parent
When Your Child Is Chronically Ill
Living in a World Apart
Managing Family Relationships
Birds of a Feather

Improving Your Life

Where Is Your Journey Taking You?
Setting Goals When You Are Chronically Ill
The Wide World of Online Learning
Strategies and Tools for Changing Habits

Most of these chapters had their start as articles I wrote for the ProHealth website, and in many cases, I reprinted them here on the blog. However, each chapter was newly updated and improved for the book, and the whole thing was edited (by myself and by a professional editor, which was a learning experience!) so that the chapters are up-to-date, all work together, and there are no redundancies. I have pulled all of these separate pieces together into a cohesive whole, designed to help you live your best life, even with the restrictions of chronic illness. Although many of these chapters do appear here on my blog (as earlier versions), it would take a lot of work to track them all down, with 13 years' of posts here!

Ironically, since I had hoped to get the print book out a month ago, all the delays I experienced have resulted in my book being published right in the midst of this global crisis. Suddenly, everyone is dealing with solitude, isolation, and feeling disconnected (as you might have heard from friends and family on social media!) and is searching for ways to make their lives more meaningful while being so severely restricted. So, many of the topics covered in this book are suddenly and surprisingly applicable to everyone. Let's hope this new-found empathy for what we live with every day will continue after the danger of the pandemic has passed!

If you enjoy my Weekly Inspiration posts, then this book is definitely for you, packed with inspiration and practical ideas.

I hope that you and your family are managing the crisis well, though self-isolation isn't necessarily a big change for many of us (but having family members home 24/7 is). 

NOTE: If you do end up reading this book, in print or as an e-book, and get some benefit from it, please leave me a rating and/or review on whatever platform(s) you use, including Amazon, Goodreads, Barnes & Noble, Apple Books, Kobo, or others. It will greatly help to get the word out so that others living with chronic illness can also find my book. Thanks!

Tuesday, March 24, 2020

TV Tuesday: Zoe's Extraordinary Playlist

I've been watching a new NBC show, Zoe's Extraordinary Playlist, that is silly, surreal, and perfect when you need some uplifting, colorful, musical fun (in other words, right now).

The premise of this new show is decidedly odd. Zoe, played by Jane Levy (who we loved in Suburgatory and What/If) is a young millennial working for a hot video game company. She's a brilliant programmer but, as is common in that industry, the only female in a sea of male colleagues, though she does have a female boss, Joan, played by Lauren Graham (of Gilmore Girls and Parenthood fame). One day, there is an earthquake (this is California) while Zoe is in an MRI listening to her iPod. Afterwards, she can hear the inner thoughts of people around her--strangers as well as friends and family--expressed through song. I told you it was weird! So, as you'll see in the trailer clip below, she hears a stranger singing "All By Myself," a group of lonely coffee shop visitors do a group song and dance to "I Want to Dance with Somebody," and her supposedly platonic best friend at work singing "Sucker" to her to express his love. No one else can hear these impromptu concerts, so she thinks she is losing her mind (as anyone would). She confides in her ultra-confident and stylish neighbor, Mo (Alex Newell, who played Wade/"Unique" in Glee), who encourages her to accept this unique talent and make use of it. It definitely comes in handy with her parents, played by Mary Steenburgen and Peter Gallagher, since her father is paralyzed and unable to communicate and her mother is secretly depressed from the 24/7 caretaking.

OK, let's just admit it - this is a bizarre premise! Nevertheless, I am thoroughly enjoying the music and dancing throughout the show and even appreciating its emotional depth. It might seem trivial and silly at first, but when Zoe is able to understand her father for the first time since he became paralyzed, her weird talent suddenly seems to have real and important uses. It's a touching episode when Zoe can help the rest of her family understand her dad's feelings. And, the music and dancing scenes remind me of how much I am still missing Glee! While there are serious moments with Zoe's family and a colleague who recently lost his own father, much of the show is colorful, fun, and uplifting, filled with impromptu musical numbers. Its seemingly silly premise actually makes it the perfect show for this moment in time, when we could all use some moments of joy.

Zoe's Extraordinary Playlist is an NBC show currently airing on Sundays at 8 pm, so episodes are available for free On Demand or on the NBC website. It is also available on Hulu with a subscription or on Amazon, for $1.99 an episode or $14.99 for the entire season. It looks like seven episodes have aired so far, with twelve planned for the first season.

My Book: Out in Paperback!

The paperback version of my book is now available from Amazon, after a long and bumpy journey (let's just say it was a learning experience!). It is also still available as an e-book on all platforms
And a favor? I REALLY need ratings & reviews, so if you read my book and get something out of it, please leave ratings and reviews on whatever platforms you use (Amazon, B&N, Apple, Goodreads, etc) - even just a few words will help! 
Thank you, and I hope everyone is coping well with our New Normal, which is ironically the title of my book! I wrote it for those with chronic illness but it is suddenly applicable to everyone coping with isolation, anxiety, grief, living a separate life, and looking for small joys each day.

Monday, March 23, 2020

Movie Monday: Serenity

A couple of weeks ago, my husband and I enjoyed streaming a movie, Serenity (2019), starring Matthew McConaughey, which is the perfect escapism film, featuring suspense, a great cast, and an intriguing plot in a beautiful setting.

McConaughey plays Baker Dill, a fisherman living on a small, remote tropical island. He earns a living from both commercial fishing and taking tourists out on fishing charters on his boat, Serenity. Dill lives a quiet, secluded, routine life, going out on the boat all day, returning to his boxcar home overlooking the water at night, and sometimes stopping by Constance's (played by Diane Lane) for company. There is a strong current of mystery and barely-concealed tension below his quiet exterior, though, and Dill is completely obsessed with a giant tuna out in the deeper waters that always gets away at the last moment. His first mate, Duke (played by Djimon Hounsou), tries to keep him in line, but sometimes Dill's fixation gets the best of him. His quiet routine is shattered one day when his ex-wife, Karen (played by Anne Hathaway), shows up in town. She left him for a wealthy man who turned out to be abusive to both her and to Dill and her son, and she wants Dill to take the horrible guy out on a fishing charter and send him overboard for the sharks to deal with. Dill says no at first but is tortured by thoughts of his sweet son being hurt by this brutal man. Will he do what Karen wants?

You know McConaughey plays the strong, silent type perfectly, and he is wonderful in this part as the tightly-controlled-but-clearly-hiding-secrets Dill. The town and island where he lives seem idyllic, but are they also hiding secrets? Of course, the biggest question of all in the movie is whether Dill will do what Karen wants and commit murder. Duke encourages him to do the right thing, but Dill's son is in danger, and it is clear that he cares very much for the boy. This twisty, taut movie is completely compelling with a uniquely engaging setting and tone. There are plenty of surprises in store that you will never see coming (we didn't), but we loved its original premise. It's a very satisfying movie that will leave you thinking about it afterward.

Serenity is currently streaming free on Amazon Prime and is also available on Youtube and Google Play.

Tuesday, March 17, 2020

TV Tuesday: Spring 2020 Preview

A lot of the shows we watch on cable are wrapping up from their fall/winter seasons in the next few weeks, so I am planning ahead for the spring TV season. I'm not seeing an awful lot that is new (at least on the services we have), but we do have some old favorites (links are to my reviews) coming back and a few new shows to try:

Old Favorites Returning

The Rookie (ABC), one of our favorite TV shows, just returned for its second season on February 23, and it is just as good as the first season so far! We love the cast, including Nathan Fillion as LAPD rookie John Nolan, and the perfect mix of action, suspense, drama, and humor.

Good Girls (NBC) is another of our all-time top shows, and it just returned for a third season on February 16. It's got an outstanding cast of kick-ass moms who turn to a life of crime, and this new season is so far just as twisty as the first two, with that perfect blend of suspense, drama and humor.

The Blacklist (NBC) (Huh, it seems I have never reviewed this one!) returns for the second half of its seventh season on March 20 (this Friday). We still enjoy this action-packed thriller starring James Spader as a master criminal working with the FBI.

Killing Eve  (AMC) comes back for season 3 on April 26. This award-winning show is fabulous, starring Sandra Oh as a British agent obsessed with a female serial killer (played by Jodie Comer), who is equally obsessed with her. Chilling, creepy, and compelling.

Ozark (Netflix) returns for its third season. This show, starring Jason Bateman and Laura Linney as parents unwillingly caught up in a life of crime, is SO good!! Great cast, great suspense, and super twisty.


New Shows To Try

Dispatches from Elsewhere (AMC) - this brand-new cable show starring Sally Field and Jason Segel (who also wrote and directs it) is a hard one to describe. It features a group of people caught up in a surreal game that opens them up to new possibilities in life. It started March 1, and we've only watched one episode so far. I'm intrigued; my husband's not so sure!

Quiz (AMC) - this British show is coming to AMC on May 25. It's based on the true story of a guy who cheated on the British Who Wants to be a Millionaire show (and apparently, got caught!). Could be interesting.

SnowPiercer (TNT) - Starting on May 31, this post-apocalyptic thriller is about a train full of survivors (apparently divided among strict class lines) in a below-freezing world. Looks intriguing, action-packed, and suspenseful.

The Good Fight (CBS All Access) - Not a new show, but we just recently signed up for this streaming service, and we loved The Good Wife, so we may give this a try.

Altered Carbon (Netflix) - Just back for its second season, we watched a few episodes of the first season last year but never finished it. Our son is enjoying it, so we may give it another try. We'll have to start back at the beginning since it is pretty complicated!

What shows are you watching this spring? We would love any recommendations!

Sunday, March 15, 2020

Weekly Inspiration: Coping in a Crisis

How are you and your family during this challenging time? Let's share our burdens (and our joys!) here and extend some kindness and support to each other.

Things are fine here. We started to mostly self-isolate this weekend, as our state experienced its first cases and declared a state of emergency. We are a bit worried about my 94-year old father-in-law (who lives nearby in independent living), so only my husband is visiting him for now, which is sad because isolation is also a concern for the elderly. Our son (with chronic illnesses) returns today from a weekend visiting his girlfriend in NY, so I'm a bit concerned about where he's been and what he's been in contact with. He's supposed to work (as a waiter in a restaurant) tonight, which is also a concern. Many of the counties surrounding our state (we are very close to the state line) have closed all non-essential businesses, including restaurants. But, overall, we are fine and our house has never been cleaner! I took advantage of the time alone at home yesterday to declutter some areas that were long overdue.

Here are some resources and sources of inspiration to help you during this unprecedented time:

For the practical side of things, read my blog post about Coronavirus and ME/CFS, which includes links to other sources of information, plus how we have helped to improve out immune system function over the years--treatments that would be very beneficial now. My post on Treating Virally-Induced Crashes is also helpful now for those (most of us) who experience a relapse just from being exposed to viruses. There is also this very interesting news article on quecertin (a supplement many of us already take for allergies and MCAS) and how it might be effective against COVID-19.

On the emotional coping side, you might find my article, Roll with the Punches, helpful; it's about how living with chronic illnesses helps to train us in how to respond during a crisis, with some tips on what to do when the unexpected happens (I think what is happening now qualifies!).

I spent this morning writing down excerpts from Hallelujah Anyway: Rediscovering Mercy by Anne Lamott in my Quote Journal - this is such an inspirational book that I had about 25 quotes to write down! I recently wrote a Weekly Inspiration post about this book, with a selection of my favorite quotes, for a sample. I found this book particularly inspirational this morning (again), as it is focused on mercy and kindness, which we all need right now.

This post from February, Weekly Inspiration: When Difficult Times Hit is filled with all kinds of suggestions to help you weather the typical downtimes in this disease--but also perfectly applicable during the pandemic. It even includes some recommendations of great TV shows, books, and podcasts to help distract you and your family!

Another post, Weekly Inspiration: Dealing with STRESS has more tips and ideas for weathering challenging times.

I think what we all need most during this time is simple kindness (even if it is given virtually, online, or over the phone). My post Weekly Inspiration: Compassion includes an inspirational TED Talk about compassion. In this time when people are clearing the store shelves without regard to others (toilet paper seems to be an especially valuable commodity!), let's each try to show each other kindness, compassion, and support instead. are YOU and your family doing? Please share your concerns, challenges, and joys in the comments below or visit my Facebook page, where there is a warm and supportive community.

Tuesday, March 10, 2020

TV Tuesday: Star Trek: Picard

We finally gave in and subscribed to CBS All Access last month, using an Amazon gift card (you can sign up through Amazon). My son and I have a long-time lunch tradition of watching NCIS and NCIS New Orleans, going back to his high school years, 10 years ago! Alas, we got to the point where the rest of the seasons of NCIS (and all seasons of NCIS New Orleans) were no longer free on streaming, and I figured we were spending more money buying individual seasons of NCIS New Orleans. So, with this new service to explore with its own list of original shows, my husband and I have been watching Star Trek: Picard. This is like coming home for us, as Star Trek: The Next Generation (on which Picard is based) began in 1987, the same year we met, and we watched the show together (and loved it) for all seven seasons. This new show brings back not only Picard but some cameos from other TNG alums, in an entirely new story.

Jean-Luc Picard, played fabulously by Sir Patrick Stewart, was captain of the U.S.S. Enterprise-D on the show Star Trek: The Next Generation (taking place 100 years after the original series, with Captain Kirk). As the new Picard opens, we see Jean-Luc, ever the gentleman, retired at the end of the 24th century, in his gorgeous vineyard in France. He's been retired for 14 years, but one day he gets a strange visitor who brings the past back to him. A young woman named Dahj shows up, asking for his help, and Jean-Luc realizes she has an important connection to someone important to him from his Enterprise days. Surprising events and sudden dangers cause Picard to flee the peace of his vineyard, on a personal mission to find someone important to Dahj (and now, to him). He teams up with an old colleague, Raffi (played by Michelle Hurd), and they hire a rogue pilot named Cristobal, played by Santiago Cabrera. Their new crew is completed with Dr. Agnes Jurati, played by Alison Pill, a scientist who has something to do with Dahj and would like to find the same person that Picard is looking for. Off they go, where no man has gone before ... no, no, no - not this time! As you can imagine, things don't go smoothly on this quest with this ragtag (but entertaining) crew.

We are enjoying Picard so far. It has very much the same tone and feel as The Next Generation, with action, adventure, outstanding visuals, great characters, and a sense of humor to make it all the more entertaining. As old fans of the original, it is great fun to see old TNG characters make cameo appearances (though you don't have to have watched the original to enjoy this show--it's an entirely new storyline) and to hang out with the wonderful Jean-Luc again. The plot is twisty and engaging so far, also tying into old aspects of TNG in fun ways but with an entirely new story. We are very much enjoying The New Adventures of Old Picard!

We've watched 6 episodes so far of the 8-episode first season. There is also a second season, which we are already looking forward to. As a CBS Original, it is only available on the CBS All-Access streaming service, though you can watch for a week with a free trial (this one is easily bingeable in a week). After that, rates start at $5.99 per month. Note that Star Trek: The Next Generation is included with Amazon Prime, so if you missed it in the 80's/90's (or want to relive it!), you can use the link to watch.

Monday, March 09, 2020

Movie Monday: The Call of the Wild

In desperate need of a night out, my husband and I met up with good friends on Saturday for dinner and to go see The Call of the Wild, the latest film adaptation of the classic wilderness novel by Jack London. Of the four of us, my husband just read the novel last year, I read it in middle school so only remember it vaguely, and our friends hadn't ever read it. All of us enjoyed this entertaining story about a man and a dog who save each other in the wilderness of the Yukon and Alaska.

Buck is a lovable but unintentionally destructive dog, living a happy life with a family in California, when he is stolen one night and sent to Alaska, where there is an urgent (and profitable) need for sled dogs for the 1890's gold rush. Buck, a very large--though wholly untrained--dog is soon brought onto a team of mixed breeds who pull the mail sled through the remote Yukon territory. Perrault, played by Omar Sy, is a kind sled master who takes his responsibilities with the mail very seriously, accompanied by Francoise, played by Cara Gee. Although not used to discipline or hard work, Buck soon learns how to be a part of the team and eventually becomes the lead dog, earning the respect of both the other dogs and his masters through his brave and diligent efforts. When the mail is no longer carried by sled, though, and Perrault is sent home to Quebec, Buck is purchased by a cruel, wealthy man intent on finding gold. He works Buck and the other dogs relentlessly and pushes them way past their limits, also putting them in danger through his ignorance of the spring melt season and his greedy pursuit of gold at all costs. A man named John Thornton, played by Harrison Ford, finds Buck when he has been left behind, almost dead, and brings him back to his remote cabin. John has encountered Buck before and kindly nurses him back to health, though John's normal life is filled with nothing but sorrow and alcohol, having lost his young son to a fever years earlier. John and Buck take off into the wilderness together, in pursuit of what John's son would have called an adventure.

While the very basic outlines of the movie are based on the novel, the story has been seriously Disney-fied. In the novel, Buck endured far more abuse (and from far crueler men) before finally finding John. This is a kinder, happier version of Buck's story, clearly meant for families and to be appropriate for children (it is rated PG). But we all agreed that we really wouldn't have wanted to watch Buck be mistreated more, and we were all entertained by this 100-minute cinematic escape. This version has humorous escapades to counter the darker themes, but the essential relationship between John and Buck remains, along with the theme of Buck gradually shedding his domestic upbringing to listen to "the call of the wild." Ford is, as always, wonderful in his role, and the scenes of the Alaskan and Yukon wilderness are breathtakingly beautiful, making me yearn for camping season to start. It's an enjoyable diversion and a heartwarming story of a man and a dog finding healing and redemption with each other.

The Call of the Wild is currently playing in theaters (we saw it in a comfy recliner theater!). DVD and streaming release dates have not yet been determined.

Check your local theaters for dates and times:

Wednesday, March 04, 2020

Coronavirus and ME/CFS

Most of the chronic illness groups I am in online have been flooded with questions from members about how this new coronavirus (which causes an infection known as COVID-19) might affect those with ME/CFS. The short answer is that we don't know for sure, but we can extrapolate from the ways that something similar, like the flu, affects people with ME/CFS.

I will mostly rely on what others have already collated and written here, but first, it's helpful to understand how the immune system in most ME/CFS patients is dysfunctional. Most of us have a Th2-dominant immune system, which means--simplistically--that our immune systems tend to over-react to viruses and allergens and under-react to bacteria. COVID-19, like the flu, is caused by a virus, so that makes it less likely that most of us with ME/CFS will catch it, though early estimates show that it may be more contagious and better at spreading that the typical flu.

However, for most of us, when we are exposed to a virus (like a cold, flu, or coronavirus), because our immune system over-responds to its presence, our usual ME/CFS immune symptoms (like flu-like aches, sore throat, swollen glands, and/or feeling feverish) worsen and we "crash." How do you tell the difference between actually catching a virus and just being exposed and crashing? Clearly, many symptoms are the same, but if you are crashing because your immune system is over-reacting, you are less likely to develop virus-specific symptoms, like congestion or (especially in the case of COVID-19) cough.

You can read more about Immune System Abnormalities in ME/CFS and also my own family's approach to dealing with Virally-Triggered Crashes. While I wrote that post with colds and the flu in mind, the approaches are the same for any kind of virus, including a coronavirus. One of the things covered in that post is how to Treat Immune Dysfunction in ME/CFS - these are ways to help normalize your immune system so it won't over-react so badly and make you crash so severely. These treatments have worked very, very well for my son and I, helping to improve our immune systems, as well as improving all symptoms. These are things you can do now to improve your immune system so it is as healthy as possible when COVID-19 hits your area. We will also definitely be stocking up on herbal antivirals (which we take daily). There is not yet any prescription antiviral medication for COVID-19 (antivirals are very specific for certain types of viruses).

For more information on COVID-19 specifically, its status, how it might affect those with ME/CFS, and what anyone can do to prevent catching it, I highly recommend Jennie Spotila's latest post, A New Virus and ME, on her excellent blog, Occupy M.E. You can always count on Jennie for meticulous research and well-written information. This post is filled with solid information and advice and is well-worth reading.

In addition, the 25% ME Group (for those with ME/CFS who are the most severe) has issued an information sheet about Coronoavirus and Those with Severe ME, written by one of the top ME/CFS doctors in the UK.

I hope that helps to answer some of your questions and ease your mind a bit. Again, the bottom line is that no one knows exactly what will happen with COVID-19 in the coming weeks and months, and no one really knows yet exactly how those with ME/CFS will respond when exposed to this coronavirus, but we can use information about the flu to make some educated guesses.

Tuesday, March 03, 2020

TV Tuesday: All Rise

I haven't had much time lately for TV and movie reviews, so I have some catching up to do, starting with a new legal drama we began watching when it premiered in fall 2019, All Rise. It features a brand-new black female judge with a desire to do the right thing and a tendency to stir up trouble.

As All Rise opens at the start of season 1, it is Judge Lola Carmichael's (played by Simone Missick) very first day as a judge at the L.A. County Courthouse. Lola has recently been promoted after working for years in the prosecutor's office as an attorney. She is a direct, honest woman who wants to be a fair judge, even to those who are not always treated fairly by our justice system, which sometimes means doing things that upset the status quo. Her colleagues are mostly old white guys who are quite traditional, though her boss is a powerful woman judge named Lisa Benner, played by Marg Helgenberger. Luckily, Lola is not completely in unfamiliar territory. Her best friend from law school, Mark (played by Wilson Bethel), who still works in the prosecutor's office, is usually in the building and available for secret stairwell conferences when one of them is struggling with something and texts the other. The show also features other courthouse regulars, including public defender Emily Lopez, played by Jessica Camacho, who is always standing up for the forgotten and disadvantaged; Luke, played by J. Alex Brinson, the bailiff for Lola's courtroom who is attending law school at night; and uber-organized Sherri, played by Ruthie Ann Miles, who is Lola's assistant. The cast is filled out with other courtroom employees, as well as a rotating cast of attorneys and defendants, as each episode tackles different case(s). Cases often address hot issues from the real world, like immigration, cyber crimes, social media, and eco-terrorrism. There is also some fun stuff interwoven into the plot, like civil weddings and children's visits, plus some action-packed episodes dealing with natural disasters, violent defenders, and other kinds of emergencies.

We've been watching All Rise since its debut in September and are enjoying it, me probably a bit more than my husband (I like relationship-driven shows and he prefers more action!), though he likes it, too. In addition to the different cases in each episode to keep the show interesting, there are ongoing storylines about the personal lives of the main characters: Lola's sometimes volatile relationship with her mother, Mark's strained relationship with his criminal father, the budding friendship (or more?) between Emily and Luke, and even a possible romance for coolly efficient Sherri. The constantly changing plots and themes keep the show fascinating and evergreen, and I find all of the characters likeable and interesting--I look forward to spending an hour with them every week. Lola shakes things up a bit as one of the few women and only person-of-color judge in that courthouse but is determined to be fair to all and look at things in new ways, even when it puts her career in jeopardy. Best of all, in the midst of the drama, issues, and occasional suspense, the show also has a good sense of humor, a must for us! I think we just have one episode left to finish season one, but CBS has announced plans to move forward for a second season. We'll keep watching!

All Rise is currently airing on CBS on Mondays (just one show left in its 17-episode first season). Right now, the last three episodes are available for free on the CBS website, and the entire season is still available (for now) On Demand, if you have cable service. It is also available on Amazon for $1.99 an episode or $24.99 for the entire season or on CBS All Access  (CBS's own streaming service, which we recently signed up for)--you can sign up for a free trial week (and binge it!) through this link. After the free trial, the CBS All Access subscription starts at $5.99 per month.

Have you tried All Rise yet? Do you enjoy the legal antics of Lola and the L.A. County Courthouse?

Thursday, February 27, 2020

Research Update - February 2020

My browser has about twelve open tabs currently, and eight of them are "new" research studies on ME/CFS. They have been sitting open and cluttering up my laptop's browser for a long time (some a very long time!) because I wanted to be sure to both read (or at least scan) them myself and share them here with other patients.

The good news is that there is a lot of medical and scientific research happening in the ME/CFS world, and it is in a wide variety of different aspects of the disease: exercise intolerance, immune dysfunction, and more. Such a wealth of growing knowledge means that experts are slowly but surely learning more about what is behind our very complex disease ... which means that advances in diagnosis and treatment will be following.

There is a lot here, so I will stick to some brief summaries and links to more information:

Immune System Dysfunction

Mast Cell Neural Interactions in Health and Disease
This paper from last year provides a summary of mast cell interaction with the nervous system through various means. It is a review article, which means that its authors didn't do any new research themselves but instead wrote this paper to pull together the findings of many different studies. This type of review article is very helpful, as it takes lots of different studies and summarizes all their findings together, providing an overall picture of one aspect of a disease process. If you are not familiar with Mast Cell Activation Syndrome (MCAS), take a look at this earlier blog post where I explain what it is and provide treatment tips (often inexpensive, over-the-counter meds) and links to more information. MCAS is a part of the immune dysfunction in many patients with ME/CFS, and treating it can sometimes bring dramatic improvements.

ME/CFS as a Hyper-Regulated Immune System Driven by an Interplay Between Regulatory T Cells and Chronic Human Herpesvirus Infections
This study from the UK, published at the end of 2019, builds on the well-known theory that ME/CFS occurs when a triggering infection (often a very common virus) causes immune system dysfunction in those who are prone to it (other studies show this is probably a genetic predisposition). This team focused in on just a few of the common herpesviruses (HHV-6, HV-1, EBV) and on the response of the body's CD4+ T cells, a component of the immune system. They developed a mathematical model that could potentially mirror what is happening in the immune system of someone with ME/CFS. While this study is somewhat limited--we already know that a wide variety of infectious agents in addition to those three can trigger ME/CFS to start--it provides a start for scientists to better understand what is happening in the dysfunctional immune systems of ME/CFS patients. And the better they understand our disease, the closer we will get to treatments or even a cure.

ME/CFS Patients Exhibit Altered T Cell Metabolism and Cytokine Associations
Like the last paper mentioned just above, this one focuses in on the details of the immune system dysfunction, which is central to ME/CFS. This was a single study, measuring different types of cells that are a part of the immune system and their responses in ME/CFS patients, including CD4+ (also examined in the previous study) and CD8+ cells. The details are a bit complicated, but again, this study is another step in the direction of better understanding the immune dysfunction that is at the heart of our disease. This blog post provides a simplified explanation of immune system dysfunction in ME/CFS - it is important to understand just the basics so that you can treat immune dysfunction and help to normalize your immune system, which will help all symptoms.

Exercise Intolerance and Orthostatic Intolerance

Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity Limitation in ME/CFS
This paper from the University of the Pacific, which has done outstanding work on exercise intolerance in ME/CFS for decades, is another review article, where the authors examine and summarize the findings of many different studies of exercise intolerance in ME/CFS. Through this process, they identified a new factor to our Post-Exertional Malaise (PEM aka exercise intolerance): chronotropic intolerance, "an inability to appropriately increase cardiac output because of smaller than expected increases in heart rate" during exercise. They came to this conclusion by noting differences between ME/CFS patients during standard 2-day exercise testing (CPET) compared to normal controls and even to cardiac patients. They also concluded that because of this, exercise tests that are supposed to be "sub-maximal" (i.e. not up to maximum effort) are probably well over maximal for those with ME/CFS. If you do not yet know about orthostatic intolerance (OI) and how it affects ME/CFS and exercise intolerance (and how to treat it!), check out this blog post on OI. Treating OI often helps to improve all ME/CFS symptoms, sometimes dramatically, and can allow you to be active again without crashing afterward. This post provides more information on how to use a heart rate monitor to help prevent crashes (which will be easier to do after treating OI). The findings of this study fit with what I wrote in those two blogs posts - people with ME/CFS have a lower-than-normal anaerobic threshold (AT), and standard formulas for calculating AT are likely to be inaccurate for us (adjustments are included in the post).

Norwegian 2-Day ME/CFS Exercise Study Adds Crucial Factor to Exercise Intolerance Findings
Unlike the other research links shared here, this one is not to an original research paper (which are written for scientists) but to an excellent summary, written by Cort Johnson, ME/CFS patient, advocate, and writer. Cort has a real talent for taking complex subjects and explaining them clearly for us laypeople. Here, a recent 2-day exercise test (the gold standard for showing PEM) had a new finding add to the growing body of information on exercise intolerance: in ME/CFS patients, our levels of lactate production immediately increase as soon as we start to exercise. This is yet another piece of evidence that people with ME/CFS switch from aerobic (with oxygen) to anaerobic energy production very quickly. This is not a new conclusion but adding yet another measurable data point can help future studies to learn even more about why even mild exertion makes us "crash."

Energy Production

The Role of Mitochondria in ME/CFS
This is a clear explanation, thanks to the ME Association in the UK, of what the mitochondria do in the body (create energy) and how they are dysfunctional in ME/CFS. It is meant for patients and others to better understand what is happening in our bodies and what research has told us so far about the nature of ME/CFS. There is nothing really new here, but it provides a nice summary, all in one place, of a lot of interesting research results and how energy production works.

Whew, that cleans up my browser quite a bit! But more importantly, all this new research is growing proof that scientists and doctors are learning more about our disease every day. I find the number of research studies in the past few years truly encouraging; it gives me hope for a better future for all of us.

Tuesday, February 25, 2020

Celebrate Mardi Gras - From Your Couch!

Float in a parade on Canal Street - Mardi Gras, New Orleans, 1988
Today is Mardi Gras day - we used to live in New Orleans, so this is a major holiday at out house! We had our annual party with a few friends (many of whom also lived in New Orleans when we did) on Saturday, and today, we will finish off the season with our annual tradition of Popeye's at a friend's house (yes, Popeye's is authentic Louisiana food!).
Want to join the fun today? Here is a collection of ways to celebrate Mardi Gras, New Orleans, and Louisiana today...including food, recipes, travel tips, movies & TV shows, and, of course, some great books! You can also check out my column in Shelf Awareness from last year that features books about and set in New Orleans, Armchair Travel: Destination New Orleans.
Great Adult Books Set In/About Louisiana (additional titles in my article linked above):
Middle-Grade and Teen/YA Books Set In/About Louisiana:
  • Ruined by Paula Morris - a teen/YA mystery/ghost story set in New Orleans (the perfect setting for a ghost story!)
  • The Freedom Maze by Delia Sherman - a compelling middle-grade historical fiction adventure (with a touch of time travel), where a girl from 1960 travels back to 1860 Louisiana
  • Zane and the Hurricane by Rodman Philbrick - a middle-grade novel about Hurricane Katrina - powerful and gripping
  • Out of the Easy by Ruta Sepetys - most people are familiar with her two YA novels set during WWII (Between Shades of Gray and Salt to the Sea), but this historical novel is set in New Orleans in 1950

Movies & TV Shows
  • Chef  - a wonderful, uplifting movie about a family food truck that travels from Miami to LA, with a stop in New Orleans, of course! My favorite movie of the year in 2015.
  • NCIS: New Orleans - though it's a crime show, it includes many scenes of New Orleans, mention of local restaurants and landmarks, and other local tidbits. They usually do a Mardi Gras episode around this time of year, so check your cable On Demand.
  • You can also check out some classic movies and modern classics with New Orleans settings, like A Streetcar Named Desire and The Big Easy.
  • Or tune in to watch parades and other scenes in New Orleans streaming live (or if you missed the parades, some great video clips) at
One of the locals in Louisiana
All this talk of Louisiana making you want to visit? I have written articles about visiting New Orleans  and Exploring Cajun Country - check them out and start planning your trip (plenty of food recommendations in both!). I'm certainly ready to go back!

Eat, Drink, and Be Merry!
Notice that many of the books and movies about Louisiana are focused on FOOD? Yes, Louisiana - and especially New Orleans - is known for its amazing, unique food. This blog post on how to celebrate Mardi Gras includes my own recipes for some classic Louisiana dishes, plus food you can grab locally today and webcams where you can vicariously experience Mardi Gras - there are plenty of suggestions in this post that you can still manage to do TODAY! Or save it for tomorrow if you like - we eat this food all year round. 

NOTE that Zapp's potato chips - which you absolutely MUST try) have been bought out by PA-chip maker Utz, so you don't have to get them by mail-order anymore. We can now find them in local stores like Wawa here in Delaware....though we still ordered a carton of assorted flavors for Mardi Gras! (Cajun Crawtator and Cajun Dill are the best.)
Me & my sons, about 10 years ago

Tuesday, February 18, 2020

NEWLY UPDATED: Facebook Groups for ME/CFS

Connect with others from your couch, recliner, or bed!
Ah, I have been neglecting this blog lately (and my book blog, too!). I have been working hard to finish formatting my book for print, so that I can upload it and make it available in paperback. I had hired a formatter earlier this year, but she spent three weeks on it and then quit abruptly, leaving me with a half-finished print book. Though I have used Word for over 35+ years as a basic word processor, I knew absolutely nothing about how to use its more complicated formatting functions ... nor what to do when it seemed to have a mind of its own! Thanks in great part to Google and the global online community, I think I have finally solved my unsolvable formatting problems. I just have to do one more thorough proofing, save it as a pdf file and hope that doesn't mess everything up, and then I can finally upload it to Amazon and other vendors. It should be available in another week or so, and the e-book is available NOW on multiple platforms.

In the meantime, a friend let me know today that an older post of mine from 2011, New Online Groups for Teens and Parents, had links in it that weren't working right anymore, so I updated it today. In addition to fixing the existing links and deleting ones that no longer worked, I also added some new groups to the post. So, it is now an up-to-date list of many of the best groups for ME/CFS patients on Facebook, with a special focus on groups for young people (though there are groups included there for everyone).

If you are not on Facebook and have no desire to be, some people set up an account with a pseudonym (some use their first and middle names or just make something up) and a fake birthdate and only use their account for interacting with other patients in the many groups available. I explain in that post how life-changing it was for me and for my son to connect with other people like this, so I highly recommend you give it a try!

And, I only included a small list of the groups I know best, but if you know of other online groups (on Facebook or elsewhere) that you'd recommend for ME/CFS patients, please leave them in the comments below.

Saturday, February 08, 2020

Now Available! Finding a New Normal: Living Your Best Life with Chronic Illness.

It's finally here! My new book: Finding a New Normal: Living Your Best Life with Chronic Illness.

From Sue Jackson, the author of the popular and award-winning blog Live with ME/CFS, comes a book to help you live your best life with chronic illness. Based on Sue’s almost 20 years living with chronic illnesses in her own family, writing her blog, writing articles on chronic illness, and leading multiple support groups, she provides support and practical advice you can use.
Whether you are in the early days of living with chronic illness or have been at it for years (or decades), there are always challenges in living a life framed by limitations and restrictions, where isolation is a common issue. This guide provides inspiration, advice on emotional coping, and guidance on living your best life with chronic illness from someone who’s been there. Though it seems impossible at first, your life will eventually settle into a new normal, and while that life may be different than the one you had planned, it can still be a vibrant, fulfilling life based on strong relationships, a healthy emotional state, and finding joy in every day. The emphasis in this book is on LIVING your life, not just enduring it.
On Amazon:
Order in Print - COMING SOON!
On Barnes and Noble:
Order in Print - COMING SOON!


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.
Suzan Jackson is a freelance writer whose work focuses on topics related to health, family, travel, and media reviews and has appeared in many magazines, websites, and anthologies. She has had ME/CFS, an immune disorder, since 2002, and also has Lyme disease. Both of her sons also became ill with ME/CFS in 2004. Her younger son is now fully recovered, after 10 years of mild illness. Her elder son, who recently graduated from college, still has ME/CFS as well as three tick-borne infections. Sue and her sons managed to improve their conditions with a number of treatments. She runs several support groups, both online and locally, to help others. Sue writes two blogs: Live with ME/CFS (this one!) and Book By Book. You can see Sue's other published work at her writer’s website,, and follow her on Twitter at @livewithmecfs and on Facebook.

Tuesday, February 04, 2020

TV Tuesday: Lincoln Rhyme: Hunt for the Bone Collector

My husband and I were thrilled to see that NBC was bringing one of our favorite book series to the small screen this winter: the series of mysteries/thrillers by Jeffrey Deaver, starring paraplegic criminologist Lincoln Rhyme. The new series is called Lincoln Rhyme: Hunt for the Bone Collector, referring to the main character and the title of the first book in the series. Featuring a great cast and suspenseful mysteries, we are thoroughly enjoying this new show so far.

In the beginning of the first episode, we see how Lincoln Rhyme, played by Russell Hornsby, came to be in his current state, confined to his home. While tracking a serial killer dubbed The Bone Collector, the killer gets the best of Lincoln, and the detective ends up falling from a height flat on his back and unable to move, as the killer taunts him and sneaks away. The show then flashes forward three years to the present. Lincoln is confined to his home, able to move only his head and a few fingers, aided by a lot of expensive electronic systems and a nurse. When a series of murders in the city appears to indicate the return of The Bone Collector, Lincoln's old boss Michael Selitto, played by Michael Imperioli, consults with Lincoln. Lincoln chooses a young NYPD officer, Amelia Sachs (played by Arielle Kebbel), to wear a body cam and investigate the crime scenes with him watching from home. With that, the partnership between Lincoln and Amelia is born. In each episode, the two investigate a difficult case, along with a forensics team and Detective Selitto, but all the while the threat of The Bone Collector (who seems to have gone back underground) is in the background.

So far, the show is an excellent recreation of the outstanding novels. The characters are slightly different than as described in the books (my husband says they didn't make Lincoln nearly cranky and mean enough), but the essence of the stories is here: a brilliant but paralyzed forensic criminologist paired with a young female police officer solving unsolvable crimes. Each episode presents a new case that grabs the team's attention, while the tension around The Bone Collector slowly builds. The audience can see who the Bone Collector is and what he's doing, so that adds to the suspense. When the killer makes it clear that he knows who Amelia is and targets her family, as he did years ago with Lincoln's, the stakes are even higher. The weekly mystery plots are twisty and compelling, the cast is outstanding, and the suspense keeps growing. We've watched the first three episodes so far and can't wait to see more--Lincoln Rhyme has quickly become one of our favorite TV shows that we wait for each week!

Lincoln Rhyme airs Fridays at 8 pm Eastern time on NBC. We watch it On Demand, and for now, all three episodes are also available for free on the NBC website. It is also available on Amazon for $1.99 an episode or $19.99 for the full first season.

Monday, February 03, 2020

First ME/CFS Pediatric Population Study Published

Big news! A long overdue first-ever population study of kids and ME/CFS was just published in the journal Child and Youth Care Forum. It's full title is The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample and you can read the abstract here (or pay for the full text). There is also an excellent, brief summary of the study's findings in Science Daily.

A population study scientifically estimates what percentage of the population has a certain disease, in this case ME/CFS in kids. This is big news because when the CDC conducted two previous population studies on ME/CFS (the second one estimating about 2 million adults in the U.S. have the disease), they left out kids entirely; both of their studies focused only on those 18 and older. Those of us with kids with ME/CFS have long seen the desperate need for a population study of kids, to help educate the medical profession (and the public) that this devastating disease does affect children and teens.

 A few highlights from the findings of the study:
  • Researchers, led by longtime ME/CFS researcher and advocate Leonard Jason, screened 10,000 children and teens (ages 5-17)  in the Chicago area (population studies like this start with phone surveys that lead to more intensive medical work-ups for those who meet certain criteria).
  • 0.75% of the children in the study had ME/CFS-- that's more than a half million children in the U.S.
  • Startlingly (though not surprising to patients!), 95% of the children identified as having ME/CFS had not been diagnosed. Only 5% had been accurately diagnosed.
  • African-American and  Latinx kids were slightly more likely to have ME/CFS and even less likely than Caucasian children to have been diagnosed.
You can read a full summary of the study's results in Science Daily. Be sure to share this article with your own doctors, school nurses, teachers and administrators!

Sunday, February 02, 2020

Weekly Inspiration: When Difficult Times Hit

This is going to be a quick post today, relying mostly on previous blog posts. My energy and stamina have been poor recently. I'll write more about the details here on the blog this week, but the bottom line is that my Lyme disease is back again. It tends to go dormant for years at a time (though only about 15 months this time) and then suddenly flare up. I didn't catch it quickly this time because the joint pain was centered in one hip instead of my knees, as is typical for me. So, I've been dealing with excruciating pain for weeks. It's given me a whole new respect and appreciation for those who live with chronic pain all the time! Now that I figured out it's Lyme and have re-started treatment, I am getting better, bit by bit, but it's been a very challenging time for me. So, here are some previous posts with tips and ideas on dealing with stress and finding joy when your life is very restricted:

In These Are a Few of My Favorite Things, I was just recovering from a bad crash--similar to now--and I comforted myself by listing things that brought me joy. Just re-reading this list lifts my spirits! In this ProHealth article, Finding Joy in Every Day, I dive more deeply into the topic, including my approach of keeping a Joy Journal.

Yes, that's a groundhog in my son's oatmeal - Happy Groundhog Day!
In this post, Joy of Celebrations, I write about our traditions of celebrating even the most minor of holidays (Happy Groundhog Day today!). While it may seem counter-intuitive to celebrate when you are feeling down and out, a small-scale at-home sense of fun and celebration can really lift your spirits, especially when every day feels the same. Today, besides being Groundhog Day (an excellent day to re-watch the warm and funny Bill Murray movie, Groundhog Day), is also Superbowl Sunday. Usually it is just my husband and I, but we still have our own little Superbowl party, with favorite snacks, enjoying the game--and more importantly, the commercials! Luckily, I am feeling better enough today that we have two good friends coming over tonight to join the fun. I will be in my own house, in the recliner and/or on the couch, so it will still be low-key and low-energy for me, but I am looking forward to this little celebration.

When I feel as incapacitated as I have the past few weeks, it is hard for me to slow down and truly rest; I fight the need to be productive all the time, even when I know I don't have the energy. This week, I mostly watched TV when I needed some downtime. You can check out all of my TV show reviews if you are looking for a new show to grab your interest and occupy your restless mind. For some recent highlights, check out Favorite TV Shows Reviewed in 2019.

Books are always a HUGE comfort to me, and I set aside quiet time for reading every single day, before my nap and before bedtime at night. I write a book blog, Book by Book, which features reviews of books I have enjoyed each week. I also included lots of book recommendations, plus tips for those who can't read easily due to cognitive problems in my article, The Joy of Reading. For more book recommendations, check out my Best Books Read in 2019 post.

My Weekly Inspiration post, Laughter is the Best Medicine, featured TV shows, movies, and books sure to make you laugh and forget your problems for a bit. Laughter really does have positive physical effects, improving immune function, relieving stress, and relaxing you. Plus, it's fun!

Another Weekly Inspiration post, Listen to Podcasts, points to another great way to entertain and distract yourself (or learn something new!), even when you are stuck on the couch or in bed. The post lists some of my favorites.

Oops - this was supposed to be a short post! My husband is up now and it's time for breakfast, but I hope these ideas will inspire you to lift your spirits and find some joy each day.

I'd love to hear YOUR ideas! How do you cope when intense stress and/or a crash hit? What are your favorite uplifting TV shows, movies, books, and podcasts? Please share your ideas in the comments below.

Happy Groundhog Day and Superbowl Sunday!