Weekly Inspiration: You're Right Where You Need To Be

We had a little scare this past week. Normally, I manage pretty well these days and can even be fairly active. Crashes from over-exertion or even from exposure to colds, etc. have become rare for me. But I have been achy and run-down all week. I sort of took it easy but sort of kept going with my normal life, too, even going to the grocery store on Thursday. By Friday, there was no ignoring it: I was fully crashed. I could hardly get out of bed, had severe aches, was worn out, and even had a mild sore throat. By my normal standards, I hadn't done anything that would usually result in a crash, so my husband and I got a little panicky: what if this was coronavirus? (though my husband also pointed out there are still plenty of ordinary viruses around that could trigger a crash). I listened to my body and rested, something I'm not always very good at!


I felt much better on Saturday, though I still took it easy. Today is still questionable--I woke up feeling great but am a tiny bit achy now, a couple of hours later.

This past week, what helped get me through was remembering a line from a friend's book, "You're right where you need to be" (from Seven: In the Lane of Hope by Michael Marini). His whole memoir is inspirational, but this one line struck me so deeply that I wrote a chapter in my new book about it. At times like this week, when I am frustrated by not being able to do what I want to do, it helps remind me to live in the moment, be present, and listen to my body. Coincidentally, this is advice we can ALL use right now, healthy or sick, during this time of extreme restrictions.

So, I thought I'd share this chapter excerpted from my book, Finding a New Normal: Living Your Best Life with Chronic Illness, here. I hope you find it helpful, too:

You’re Right Where You Need to BE

In autumn of 2018, during a severe, three-month–long crash triggered by a relapse of Lyme disease, I was frequently frustrated by my inability to be productive. With a wide variety of treatments, I normally function fairly well now, and this unexpected infirmity seemed to go on and on.

During that time, I was reading an inspirational memoir, Seven: In the Lane of Hope, written by a friend of mine, Michael Marini. One line in Michael’s book especially resonated with me. His dad, who was a running coach, frequently told Michael and his 10 siblings “you’re right where you need to be” while they were running a race. In the book, his dad repeats this familiar phrase when he is in the hospital and incapacitated by health problems. That phrase struck me and helped me recognize that I needed to relax, let go of my normal expectations for myself, and live in the present.

Sometimes, you hear something at exactly the time you need it, and that was the case for me with this simple phrase: you’re right where you need to be. It reminded me that during this crash/relapse, my job was to take care of myself and everything else could wait. It’s hard to get out of the must-do mindset so prevalent in our modern world. Yet, this one line did that for me, making me stop and think instead of just reacting.

With respect to living with chronic illness, I’ve found that “you’re right where you need to be” means the following.

Giving in Versus Giving Up

Although severe relapses have become rare for me, thanks to treatments, when they do occur, I always struggle with accepting my limits and resting completely. For instance, I might lie down on the couch but still try to work on my laptop. I have to remind myself that giving in to what my body needs is not the same as giving up. Giving in is a healthy response. It’s listening to my body, allowing myself to rest, and admitting to myself that “I’m right where I need to be.” That can be difficult, though, in a culture like ours, in which we feel like we must always be in control. When I do finally give in, set aside any work, and completely focus on resting, it’s always a huge relief.

Accepting Where You Are

You can accept that you are right where you need to be now without giving up hope of a better tomorrow. Living with chronic illness requires a careful balance of acceptance and hope as well as an understanding that acceptance does not mean giving up. Constantly fighting against your illness is stressful and exhausting, requiring mental energy most of us don’t have. It’s better for your body—and for your long-term health—to try a Zen-like attitude and accept where you are today. You can continue to look for and try new treatments while acknowledging what you need right now. During that challenging autumn of 2018, once I accepted my need for rest and let go of thinking I had to be doing something, I was able to fully rest and give my body what it needed.

Different Seasons

There are different seasons in every life and in the course of a chronic illness. “You’re right where you need to be” means recognizing that where you are today is simply where you are today; tomorrow or next month or next season or next year might be different. A principle of Buddhism is that everything is in a constant state of change. When living with chronic illness, it may sometimes feel like every day is the same, but over the course of a life, there will always be changes and other seasons. Recognizing this truth can help you to accept where you are today and give yourself the care you need.

Live in the Present

This is a tough one for most of us, but living in the present is far less stressful and better for your physical and mental health than looking back or ahead. Obsessing over past hurts or “the old you” can set up a painful and self-destructive mindset, wherein resentment and pain build and worsen, poisoning your body and mind. Worrying about the future can be just as detrimental and make you miss what is going on today.

As hard as it is to do, it’s best to let go of the past and live in the present. That’s what “you’re right where you need to be” means. It’s fine to plan for the future in a positive way—without worrying about what will happen and about those things that are out of your control.

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All of these strategies require intentional thought (at first) and some practice. Over time, though, acceptance, living in the present, and focusing on your needs become habits that can improve your life. Wherever you are today in your life and your illness journey, you’re right where you need to be.

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).

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:

Introduction                                                                           

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 

Relationships

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!

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!

FINALLY! 

 

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.

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.

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!

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.

So...how 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.

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.

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:

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.

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?

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.