Tuesday, November 17, 2020

TV Tuesday: Yellowstone

After hearing several friends rave about the TV series Yellowstone, my husband and I decided to try it. We loved the first two seasons of this modern Western drama and can't wait to see season 3 when it starts this week!

Yellowstone is the name of an enormous ranch in Montana, headed up by patriarch John Dutton, played by Kevin Costner. John has three grown sons and a daughter but lost his wife tragically when they were still kids/teens. He is getting older but is still fiercely committed to protecting his huge ranchlands, from the constant threat of land developers and the local Native American tribe. John's plan is for his oldest son, Lee (played by Dave Annable), to take over the ranch eventually, and Lee's been training for that. His next son, Jamie (played by Wes Bentley), was sent off to Harvard to become a lawyer so that he could protect the ranch legally, so he works in town. The youngest son, Kayce (Luke Grimes), was in the military--which clearly left some emotional scars--and is married to Monica (played by Kelsey Asbille), a beautiful Native American woman. They live in a small house on the reservation with their young son, Tate, and Kayce is trying to make a living training horses, which is a special talent of his. John's only daughter, Beth (played by Kelly Reilly), is a bit of a mess, to put it mildly! She drinks way too much and is quite promiscuous, including with the ranch's longtime manager, Rip (played by Cole Hauser), who John treats almost like another son. Thomas Rainwater, played by Gil Biirmingham, is the well-educated newly-returned leader of the local Indian tribe, who is determined to return some of the Dutton's land to its original owners. Plus, there are evil brothers in development, and a wealthy guy new in the area who desperately wants some of the Dutton land for his new luxury hotel, golf course, and ritzy housing development.

In case you can't tell from that basic description, every episode is a rollercoaster of secrets, lies, deceipt, behind-the-scenes machinations and deals, plus a healthy helping of sex and violence. It's basically a complex soap opera set among cowboys in the West. Costner plays the consummate cowboy, though he will do anything to hang onto his lands and keep his ranch together. The rest of the cast is excellent, too, though many of the actors were unfamiliar to us. The ranch house is rustic but luxurious, and the land in and around the ranch is breathtakingly gorgeous. There are constant surprises and plot twists, keeping each episode action-packed and suspenseful. It's a riveting drama that kept us captivated through its first two seasons, and we can't wait to watch season 3!

Yellowstone is a Paramount Network show, so you can watch the new season 3 free on their website. It is also being shown (all 3 seasons) on Peacock, with season 3 starting this Sunday, which is also free (we watch it on Peacock through our cable service On Demand, but you can also watch it directly from the website). Finally, Yellowstone is also available on YouTube, with a subscription, or on Amazon for $1.99 an episode or $12.99 for the first season. Lots of ways to watch!

Have you tried this compelling Western drama yet? 

Sunday, November 15, 2020

Weekly Inspiration: Busting the "Everything Happens for a Reason" Myth

I've already written here about Kate C. Bowler and her magnificent podcast, Everything Happens, in my post from a few weeks ago, Weekly Inspiration: Two Inspiring Podcasts. My love affair with Kate's moving, funny, inspiring interviews continues, and I have been listening to both her new episodes and her backlist. So, scrolling through the TED Talk site today, it occurred to me to check if she'd ever given a TED Talk. She had, at TEDMed 2018, and wow, it's a powerful talk that speaks directly to those of us with chronic illness.

As with her podcast--and book-- her TED Talk is titled, "Everything Happens For a Reason"--and other lies I've loved. In it, Kate explains how she had spent years studying the "prosperity gospel," the basic concept that good things happen to good people, and if you just live a good life, you will be rewarded. Then she was diagnosed with Stage 4 cancer at the age of 35. She tells the story, with jokes and also with tears streaming down her face at times, much better than I can:




A couple of her points really hit home for me. She talks about this concept of good people being rewarded, which implies the opposite: if something horrible happens to you, you must have somehow deserved it. She describes how hundreds of people (through her writing) have tried to convince her of this (what a horrible thing to say to someone with cancer!). She talks about the underlying fear that encourages people to think this way, which is basically "if it happened to YOU, then it could happen to me." In this way, people try to find a reason for your tragedy, a way to explain why the same thing could never happen to them. But, as she says in the opening to her podcast each week (see my earlier post--the full quote is so powerful), "Hey, there are some things you can fix and some thing you can't, and it's OK that life isn't always better ..."

I have experienced this first-hand with people in my life who refuse to accept the severity or permanence of my illness. One person very close to me even went around telling everyone else that my illness was all in my head in my early years of ME/CFS. I figured out long ago that this fear Kate describes was likely at the root of all that, but it still hurts tremendously to be minimized or to have my suffering ignored by people I love. That's why it feels so powerful and encouraging to listen to Kate's talk and podcast and to feel like she is talking directly to me.

On the positive side, she also discusses an unexpected benefit of her experiences with cancer (hers is treatable but not yet curable). In talking of discovering this hidden world of illness (see my own article, The Hidden World of Invisible Suffering), she says, "My own suffering began to feel like it had revealed to me the suffering of others." She explains that this led to more connection in life. 

I agree wholeheartedly! I've often written about exactly that (like in the article linked above): that one silver lining in a life of chronic illness is reaching out and connecting with others just like you. Finding others--online or in real life--widens your world and not only brings you comfort and companionship but allows you to offer the same to others, which can be incredibly rewarding. I wrote about that topic here, including how to find others.

She concludes with a statement I fully agree with: "Life is so beautiful and life is so hard."

Her talk is less than 15 minutes long, and is so powerful and touching. I hope it inspires YOU as it inspired me.

Friday, November 13, 2020

Official Statement on COVID-19 "Long-Haulers" and ME/CFS

I was excited to see a new letter published a couple of weeks ago, Post-COVID "Long-Haulers" and ME/CFS, from the U.S. ME/CFS Clinician Coalition, a cooperative group of the top ME/CFS doctors in the U.S. This 1-page letter (with a page of scientific references) officially summarizes what has been reported in various media outlets previously: that many so-called COVID-19 "long-haulers" have developed ME/CFS. They provide the background and history of infectious triggers and ME/CFS, explain what ME/CFS is, and provide an explanation of and links to their own website, which provides details on diagnosing ME/CFS and mentions some treatment options. It's a short, easy-to-understand letter, so take a look at it at the link above.

Why is this a big deal? 

Back in August, I wrote a post about COVID-19 Long Haulers and ME/CFS that provided links to a bunch of news articles, TV news stories, and other media summaries about those who had COVID-19 but continue to suffer with symptoms months after supposedly recovering, referred to as "long-haulers." All of those included in my post mentioned ME/CFS. The problem is that the news doesn't seem to be catching on very quickly or effectively! There are still loads of news stories every week about the "mysterious" long-haulers, saying that no one knows why they are still sick. I've noticed people joining some of the ME/CFS online support groups who are long-haulers and don't yet have a solid diagnosis. 

In short, while some experts understand what is going on, it seems that most of the medical profession (particularly those who have either not believed in or made light of ME/CFS in the past), the general public, and most importantly, the patients themselves have not gotten the message that many cases of COVID-19 long-haulers fit the ME/CFS diagnostic criteria. (Note that not all long-haulers fit that criteria; some have lung damage from COVID-19 that better explains their symptoms.)

This letter is the first time that a top group of experts have all communicated as a group and provided all of the information necessary to understand how so many people who had COVID-19 could now have developed ME/CFS.

How Can You Help?

Now, what we need is to help get the word out by sharing this letter widely. Share it on social media, print it and give it to your doctor(s) so they can better understand their COVID-19 patients, and share it with anyone you know who's had COVID-19 and is still sick so that they can share it with their own doctors.

If you are looking for more information on both the link between COVID-19 and ME/CFS and how COVID-19 might affect those who already have ME/CFS (and what you can do now to protect yourself), check out these posts from the past eight months:

  • Coronavirus and ME/CFS (March 4, 2020) - includes information about the specific immune dysfunction in ME/CFS, how COVID-19 might affect us, and links to ME/CFS treatments that can help to prevent and treat, with resources from several different sources.
  • Info and Resources on COVID-19 and ME/CFS (April 9, 2020) - a wide range of resources on how COVID-19 might affect those with ME/CFS and treatments to help protect yourself.
  • COVID-19 Long Haulers and ME/CFS (August 27, 2020) - the aforementioned post about the connection between COVID-19 long-haulers and ME/CFS, with links to lots of news stories and comments from experts.

I hope that you and your family are staying safe and healthy during this difficult time.

Please share your own experiences in the comments section, whether you already had ME/CFS or are a COVID-19 long-hauler.

Monday, November 09, 2020

Movie Monday: Rebecca

Last weekend, on Halloween, my husband and I settled in for a creepy, suspenseful new adaptation of Rebecca on Netflix. We listened to the audiobook a couple of years ago, though my husband quit halfway through (at the end of our car trip), and I listened to the end. We both enjoyed the taut suspense of this new movie.

For those new to the story, Rebecca is a classic Gothic novel, written by Daphne du Maurier and published in 1938. It was first adapted to film in 1940 by Alfred Hitchcock. My review will focus mainly on this new adaptation from Netflix, which differs in some ways from both the book and the first movie.

Lily James plays a naive, pretty young woman working as a "lady's companion" for the loud and gossipy Mrs. Van Hopper, played by Ann Dowd, who is staying in Monte Carlo. When Mrs. Van Hopper becomes ill temporarily, the young woman (who is nameless in the story) is left on her own. She meets the handsome and charming Max de Winter, played by Armie Hammer, and the two of them immediately hit it off. Mrs. Van Hopper has warned her that Mr. de Winter lost his wife a year ago and is grieving and unstable, but in spite of the warnings, she falls in love with him and spends days with him, dining out, touring the area, and going to the beach, enjoying a lifestyle she never dreamed of. When Mrs. Van Hopper recovers and abruptly proclaims that they are returning to New York, Max proposes, and the two are quickly wed. After a honeymoon in Europe, Max brings her back to his huge estate in England, called Manderley. Coming from such modest means, she is completely overwhelmed by the wealthy and grandiose estate, its formal traditions, and especially the stiff and unwelcoming house manager, Mrs. Danvers. She makes it clear that the new Mrs. de Winter can never replace the old one, Rebecca, whose room and other things remain exactly as she left them. Try as she might to fit in and make a place for herself at Manderley, Mrs. de Winter finds it harder and harder to ignore the sinister feelings, as secrets slowly unfold. Things are definitely not as they seem.

This new movie successfully replicates the creeping dread and twisty plot surprises of the book, though some of the plot points and characters have changed in certain ways. For instance, Max is said to have a quick temper, but it doesn't really show up much in this latest adaptation. The ambiguous, sudden ending of the book here is drawn out a bit more, to allow for a happy ending. My husband and I enjoyed watching the movie, so I was surprised when I listened to a review of the new Rebecca on Pop Culture Happy Hour, one of my favorite podcasts, and found that most of the hosts didn't like it (their episode at the link - it includes spoilers). My conclusion is that if you have seen the 1940 Hitchcock film (which won an Academy Award for Best Picture), then you will probably find this version lacking. Similarly, if you are a huge fan of the original book and have read it multiple times, you may find yourself nitpicking at the differences here. My advice if you want to enjoy this new adaptation is definitely don't watch or rewatch the 1940 version first, as one of the hosts on the podcast did! I read the book (listened to it) several years ago, and my husband never even finished it, so we went into the movie fairly cold, and we enjoyed it as the excellent dark, creeping, suspenseful story that it is.

Rebecca  is a Netflix original movie, so it is available exclusively on Netflix.

If you'd like to watch the original 1940 film adaptation directed by Alfred Hitchcock, you can stream it on YouTube or watch on DVD.

Tuesday, November 03, 2020

TV Tuesday: The Stranger

The trend of adapting books into TV shows and movies shows no sign of slowing, which makes me happy! Novels often translate beautifully to the screen, bringing the characters to life and providing complex, intriguing plots. The Stranger, a Netflix original program, is adapted from a Harlan Coben thriller, and although neither my husband nor I read the book, we both thoroughly enjoyed the dark and twisty TV show.

Adam Price, played by Richard Armitage, lives a happy typically suburban life. He's a lawyer, his wife, Corrine (played by Dervla Kirwan), is a beloved high school teacher, they have two healthy sons, and they spend their Saturdays at the soccer field. One day, out of the blue, a stranger--a young woman wearing a baseball cap (played by Hannah John-Kamen)--comes up to Adam and tells him that Corrine faked her pregnancy and miscarriage the previous year. Stunned, Adam goes home and checks the evidence the stranger told him about and then confronts Corrine, who is upset but says he doesn't know the whole story. The next day, Corrine disappears, leaving a mysterious text message that says she needs some time alone. Meanwhile, Johanna, played by Siobhan Finneran, is a police detective in town who will eventually look into Corrine's disappearance. For now, though, she and her partner are investigating a brutal and strange crime scene in the woods, involving a decapitated alpaca from a local farm and a naked, injured boy from the local high school. As each episode unfolds, we see the stranger approach more people in the town, each time disclosing a secret held by a loved one, complete with evidence, and sometimes blackmailing them for large sums of money. Who is she and why is she doing this? And what happened to Corrine ... and that poor alpaca??

Just like the thriller novel it is derived from, this show takes off like a shot and is filled with all kinds of unexpected plot twists. By the end of the first episode, we were hooked, but each new episode adds another layer of complexity, as the stranger weaves a web of secrets and deceit through the people in town that gets more and more complex. It's just eight episodes long and fast-paced, so it kept us rapt ... and always wanting to know what happens next. We watched it over the course of a couple of weeks, but it would be a fun show to binge, too. The acting was excellent and the plotting superbly complicated (but not so much that we couldn't follow it). We really enjoyed this taut thriller filled with suspense that kept us guessing right up to its last moments.

The Stranger is a Netflix original so is only available on Netflix.

Sunday, October 25, 2020

Weekly Inspiration: Two Inspiring Podcasts

Weekly Inspiration? More like Monthly Inspiration these days! Regular readers of my blog may recall that I have been worse than usual, with very low stamina, since March, and there is still no end in sight for that downturn (yet). But a few weeks ago, on top of that, I went into a very severe crash that left me completely bed/couch bound day after day and incapacitated. This bad crash felt like one caused by an infectious trigger, though I still have no idea exactly what triggered it. I had only mild viral symptoms (like a bit of a runny nose and post-nasal drip) and only for a few days, and no one else in my family got sick, showed any signs of a virus, or crashed (my son). It lasted a little more than two weeks, and my energy started to return in the latter part of this week. I am still quite achy most days, but my mental energy is back (back in 2012, I wrote a post about Mental Energy and ME/CFS that really hit home for a lot of people). So, here I am, trying to get back to regular blog posts (from the couch).

During this rough period recently, I discovered two new-to-me inspirational podcasts that I wanted to share with you. I heard about both of them on the Happier Podcast with Gretchen Rubin, which I included in my Weekly Inspiration post Listen to Podcasts.


Everything Happens

The Everything Happens podcast is hosted by Kate Bowler, a woman who is living with Stage IV cancer. Her podcast logo, shown here, tells it all: Everything Happens for a Reason, with the "for a reason" part scratched out. If, like me, you hate when people quote that to you, you will love Kate. Here is part of her introduction to each podcast:

"Look, the world loves us when we are good, better, best. But this is a podcast for when you want to stop feeling guilty that you're not living your best life now. ... Life is a chronic condition. The self-help and wellness industry will try to tell you that you can always fix your life. ... But I am here to look into your gorgeous eyes and say, 'Hey, there are some things you can fix and some thing you can't, and it's OK that life isn't always better. We can find beauty and meaning and truth, but there's no cure to being human. So, let's be friends on that journey. Let's be human together.' "

Awesome right? It's like she's talking directly to us, and she gets it! Her episodes are easily consumed in one sitting, usually 30-40 minutes, and each one features an interview with someone on a topic that fits with her podcast's vision and message (above). Recent episodes I enjoyed include Bishop Michael Curry (who married Harry and Meagan) on  and The Power of Ordinary Love and Mary Pipher on The Art of Aging. Her guests aren't always quite that famous, but so far I have enjoyed and been inspired by every episode I've listened to. I've subscribed and look forward to hearing more episodes (both new and from her backlog).



Feel Better, Live More.

The Feel Better, Live More podcast is hosted by Dr. Rangan Chatterjee, who I guess is famous! I first heard him on the Happier podcast just recently, but apparently, he is a huge celebrity, especially in the UK and Europe. He's been a medical doctor for 20+ years and has written four books. He focuses on a new approach to medicine, lifestyle medicine, looking at the whole picture instead of at each part of the body or each disease separately. I think this is something all of us with ME/CFS, tick infections, and other related illnesses can get behind, since our diseases affect every part of our bodies, and most doctors only look at one thing at a time. Each episode features an interview with an expert on various topics, like healthy eating, keeping your immune system healthy, meditation, pain, and relationships. His interviews tend to be long, an hour or more, but the few that I have listened to so far have been interesting and inspiring.

What are your favorite inspiring podcasts? Which ones help to lift you up when you are feeling down or going through a rough period? Share your ideas and thoughts in the comments.

Wednesday, October 14, 2020

The October Slide: ME/CFS and Infectious Triggers

Some with ME/CFS call it The October Slide. Others refer to it as a seasonal downturn. Many patients don't call it anything but wonder why on earth they feel so awful during fall and winter. My son and I used to experience this, too, every year, spending endless weeks--or months--with both of us crashed and unable to get up off the couches and recliners. Although this is now rare for us, I re-experienced this phenomenon this past week, when I abruptly went into a severe relapse that kept me home and lying down for a week (I'm not back to my normal baseline yet but am starting to feel better).

The good news is that there are medical, scientific reasons for this annual fall/winter downturn, and it can be treated and eliminated. As I said, my son and I used to spend much of each fall and winter badly crashed, and it is now a rare occurrence. We also used to both get bacterial bronchitis 4-5 times a year (often in fall and winter) that knocked us out completely and required antibiotics (sometimes multiple rounds). These days, we may each get bronchitis once every two years or so, and we usually catch it early, treat it, and only spend a few days crashed from it. You can say good-bye to the October Slide and the fall/winter crashes, too. Here's how:

What's Going On

ME/CFS is, at its heart, an immune disorder. It doesn't fall neatly into the categories of immune-deficient or autoimmune, though, as most immune disorders do. Instead, we have characteristics of each, with parts of our immune systems over-reactive and other parts under-active. This blog post, Immune System Abnormalities in ME/CFS, explains in simple terms what's going on behind the scenes that contributes directly to our seasonal downturn.

The common worsening and frequent crashes most of us experience in fall and winter are mainly due to exposure to infectious agents. While, as explained in the post linked above, our immune dysfunction means that we rarely "catch" colds, flus, and other viruses, just being exposed to them can cause our already-overactive immune system to go further into overdrive. The crash symptoms we experience in fall and winter are usually symptoms of our immune systems getting seriously over-stimulated: things like flu-like aches, sore throat, swollen glands, worse fatigue/exhaustion/lack of energy, and sometimes a fever or feeling feverish even with a normal temperature. Alternatively, when someone catches a cold or flu, they will get the classic symptoms of it, which might include severe congestion, cough, high fever, etc. In the example of my bad crash this past week, which was almost definitely from exposure to some infectious agent, for a couple of days I had a bit of a runny nose, a tiny bit of mucus in my chest in the morning (again, I am prone to bronchitis), and maybe a very mild fever on a couple of days. But my main symptoms have been severe head-to-toe achiness, complete lack of energy and extreme exhaustion, and a mild sore throat--all signs of immune activation.

What was I exposed to last week? I have no idea! Both of my sons were out of town and returned last Sunday, so they had certainly been exposed to stuff. I was in the grocery store the week before (with a mask, of course). That's the point about this time of year: there are more colds, flus, and other infections floating around, with more people indoors where the germs are easier to get exposed to. I'm guessing it was a simple cold germ since flu season isn't really here yet, though of course in 2020, we are all concerned about coronavirus, too. There are dozens of viruses floating around in the air at any time.


What Can You Do?

There are two important steps to stop this annual seasonal downturn: 

  1. Improve Your Immune Function
  2. Treat When you've Been Exposed to an Infectious Agent

Improving immune function in ME/CFS is tricky because it's a mixed bag, so the treatments used for immune deficiency or for autoimmune diseases won't work for us. Instead, we need to focus on what's known as immune modulators, which will help to normalize the immune system (rather than boosting it or suppressing it). We have found three treatments which help to do this: low-dose naltrexone, inosine, and glutathione. These are all inexpensive, and the last two don't even require a doctor (though it's always good to discuss any new treatments with your doctor(s)).

This blog post, Treating Immune System Dysfunction in ME/CFS, covers all three of those treatments and provides more detail on the immune dysfunction that is common in ME/CFS.

Using those three treatments put a stop to the annual fall/winter crashes for both my son and I and to our frequent bouts of bronchitis (which occur because our immune systems under-react to bacterial infections). We both no longer experience a seasonal downturn nor the severe and long-lasting crashes that come from exposure to infectious agents in fall and winter. 

But, of course, I did crash from a likely infectious trigger last week, so it can still happen on rare occasions; we just don't spend all winter battling it anymore. And when it does happen, it only takes a day or so for me to recognize that I was probably exposed to some infection (because of the severity of the crash; with these and other treatments, I no longer crash badly from over-exertion). When that happens, I listen to my body and rest as much as I need to (I have been pretty much couch-bound the past week), but I also increase my dose of herbal antivirals/antibacterials. 

My son and I both take a range of herbal antivirals/antibacterials/antifiungals every day in our daily meds boxes, including Emulsified Oil of Oregano (ADP), Olive Leaf Extract, Grapefruit Seed Extract, and Monolaurin. But on weeks like this, when I've been exposed to something that's made me crash (or if I know someone near me has a cold, flu, etc.), then I add extras. This past week, I more than doubled my dose of Olive Leaf Extract (from two every other day to four every day), and I have been making my son and husband take it, too! Yes, these work for healthy people without ME/CFS like my husband, too. After a week, my mild viral symptoms are long gone, I am starting to feel better, my husband hasn't caught anything, and my son hasn't crashed.

All of this is further explained in the post, Treating Virally-Induced Crashes in ME/CFS


You do NOT have to accept and live with the annual worsening and extra crashes every fall and winter! These treatments will not only help to prevent that seasonal slide but will also help to improve all of your ME/CFS symptoms, including exercise intolerance. Since immune dysfunction is at the heart of our disease, improving and normalizing your immune system will help to make everything better. It's not a cure--that doesn't exist yet--but these are improvements that can vastly improve your ability to function and your quality of life.

Have a wonderful fall and winter!

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.

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Monday, October 12, 2020

Movie Monday: The Vast of Night

After a long sick week for me, I was in the mood for a movie last night, so my husband and I watched The Vast of Night, a new original movie from Amazon. This 1950's style sci fi drama is original, suspenseful, and a lot of fun.

The film has a very Twilight Zone feel to it.  In fact, the entire movie is framed as if it were an episode of a black-and-white TV show called Paradox Theater, which is clearly a send-up of the classic twisty show. Then, the audience is brought into the show (and the scene turns to real-life color), and the story unfolds in the small town of Cayuga, New Mexico. Sixteen-year-old Fay, played by Sierra McCormick, is a cute 50's teen in cat's eye glasses, a full skirt, and saddle shoes who talks a mile a minute. She's excited to show Everett, a slightly older guy played by Jake Horowitz, her brand-new tape recorder that she bought based on his advice. As they walk from the high school, where the rest of the town is gathering for a basketball game, Everett, who works as a DJ at the radio station, shows Fay how to use the device by encouraging her to talk about the science articles she's read recently. Then, Fay goes to work as the town's evening switchboard operator, and Everett heads to the tiny radio station to broadcast his nightly show. Fay starts to notice some odd happenings: the radio show cutting out, phone calls getting dropped for no reason, and an odd noise she's never heard before on one line. She calls Everett, who shares her love of science, and plays the strange sound for him. Fay runs over to the radio station (she does a lot of running in this movie!) and together, the two of them catch the strange sound on Everett's recording equipment, play it on air, take a call from a mysterious caller named Billy, and rush to visit an elderly woman named Mabel. Both Billy and Mabel tell strange stories about this noise, which they've both heard before, and Fay and Everett run around the empty town, trying to solve the mystery.

This movie is so much fun! Any Twilight Zone fan (like me) will feel right at home, and the story is filled with tension and suspense. It's not super fast-paced at first, but it feels just right for the 50's setting. The two main actors (who are on-screen most of the time) are both excellent in their roles, completely inhabiting their young, curious characters. A lot has been said by professional film critics about the production values of this movie and the unique ways in which it was shot. I'm no expert, so I can't comment on that, but as a viewer, I was fully immersed in the story and very much enjoyed it. And did I mention it's funny, too? To top it off, the ending felt perfect to me.

The Vast of Night is an Amazon original movie, so it is available exclusively on Amazon Prime.

Tuesday, October 06, 2020

TV Tuesday: High Fidelity

My "alone time" for TV watching is pretty minimal these days, with a full house, but I like to find a good half-hour show that I can squeeze into my rare solitude for a little downtime! My latest pick was High Fidelity, a Hulu show based on the 2000 movie starring John Cusack (and on the original Nick Hornsby novel), with a modern twist.

In a gender switch, Zoe Kravitz (daughter of musician Lenny Kravitza and actress Lisa Bonet) stars as Rob, the owner of a record store who loves to make Top 5 lists. Here, the record store is located in so-cool and of-the-moment Brooklyn. Rob's best friends and record store colleagues are Simon (played by David H. Holmes), a gay, self-conscious guy, and Cherise (played by Da'Vine Joy Randolph), an exuberant, sharp-talking woman who dreams of being the lead singer in a band. As in the movie (and novel), the show is structured around Rob recounting her Top 5 Heartbreaks of All Time, as she tries to figure out why none of her relationships work and why she is still alone in her 30's. Mac, played by Kingsley Ben-Adir, is the handsome British guy who was Rob's latest heartbreak. He's just moved back from London, so the love and the break-up are suddenly front and center for Rob again. Meanwhile, Clyde, played by Jake Lacy, is a new man in Rob's life (sort of). The 10 episodes not only go through Rob's heartbreak list but also delve into the lives of her friends and lovers (past and present). Through it all, music is a constant thread, with great, unusual background music playing in the record store and the Top 5 lists of the three record store employees.

Although this show is centered on heartbreak, it's a whole lot of fun. The music provides a great backdrop to the story, and there is plenty of humor as well. Kravitz and her co-stars do a wonderful job of inhabiting their quirky characters so that you come to care for them and root for them, as they all grow and evolve. Rob is kind of a mess here, but as she works through her past heartbreaks, I wanted her to come out of it healthier and happier. I loved the music and the Top 5 lists and the witty banter among the friends. The writing is excellent! It's a great show for some fun and escape, which was just what I was looking for.

High Fidelity is a Hulu original, so it is available only on Hulu.


Thursday, October 01, 2020

News From Our House - Oct. 1, 2020 - Taking Time Off

Hi, all! My husband and I are just back from a day trip to the beach for a late anniversary celebration (more on that below), a lovely little getaway. I have still not been feeling great, with far too many bad crash days, but we have enjoyed some good times in the past couple of weeks, too. 

Antivirals Update

I am still taking antivirals for reactivated HHV-6 (as explained in this post), and still struggling, though making a little progress. I had a lot of bad days in September, which was frustrating because it's my favorite month and the weather was finally better. I have worked up to a full dose of Famvir (famciclovir), which is one pill per day, after four months of gradually working up. Right from the start, I have had a pretty severe Herx reaction (a worsening that occurs when treating certain infections). 

My stamina is far, far below where it normally is. With treatments over the past 15 years, I was able to exercise again and had worked up (very gradually and only after treating exercise intolerance) to being able to walk most days, working out with weights (carefully, lying on the ground) three or four days a week, and being able to manage walking for up to 60-90 minutes on a good day! Recently, I have been in such bad shape that even just a slow 15-minute walk could cause a crash. That's a big downturn for me. 

Now that I am up to a full dose of antivirals, I am hoping to start seeing some improvements. I have walked a bit during some "days off" with my husband this past week (see below) with only minor repercussions, so I am hoping things are getting better. This has been going on since mid-March, seven months now, so it's been tough to deal with being incapacitated again after so many years of managing better.

Insurance Woes

I won't get into all the details of the whole, long, nasty story, but our son turned 26 this summer, so we had to apply to keep him on our health insurance. We'd been told by other parents that it was easy to do, so we weren't worried. We sent in our application ... and they rejected it. They said they agreed he was disabled but they thought he could support himself (what??). So, I spent a full week scrambling to collect doctor's letters, copy lab results, and write a 4-page letter from us, all to say that he can not work full-time right now and needs to stay on our insurance. Our appeal was approved and they overturned their first decision - wonderful, right? Except that was September 1, and it has taken a full month of never-ending phone calls to get them to correct their system so that it showed he was covered! We kept going back to the pharmacy to refill meds and being told he didn't have coverage. All just to say that it's been a difficult and very stressful process. And, yes, that was the short version!

U.S. parents, learn from us: If you have a disabled 25-year-old, get your application to keep him/her on your health insurance in as early as possible, to leave time for the bureaucratic mess that may follow! Ask your carrier for the forms.

Taking Time OFF

My husband has had his hands full since the pandemic began, between me not feeling well (and not being able to do much) and caring for his 95-year-old father and working full-time. Normally, we enjoy traveling with our pop-up camper--nice, slow-paced, relaxing road trips. This year, we haven't been able to travel at all, for all of these reasons: the pandemic, my condition, and not being able to leave my FIL (before we hired help, my husband had to go check on him two or three times a day!). But we do have help now (in-home care services who send someone to spend 3 hours with him on weekdays), so I was determined to somehow fit in some much-needed downtime for us.

Reading at our campsite

Last week, we took a little day-and-a-half camping trip to a nearby state park mid-week (to avoid the crowds and to go when we had extra help for dad). We left Tuesday evening and came back by lunchtime Thursday, and we did get some emergency calls on our only full day off (a broken tooth!). BUT, we managed to grab some very peaceful quiet time for ourselves outdoors.

Short walk to a secluded beach

It was a very relaxing trip. We slept in our camper, read a lot, took a short walk down to a nearby isolated beach, had a campfire, and just enjoyed the tranquility. The campground was almost empty, and being outdoors just immediately fills me with a sense of calm. Falling asleep with all our windows unzipped, listening to the sounds of the crickets and the water lapping against the rocks, was especially lovely.

Waking to the sounds and sights of nature!

We had this amazing waterfront campsite and thoroughly enjoyed the downtime and perfect weather with just the two of us.

Magnificent water view from our campsite

Today, we enjoyed another mini getaway. Our 31st anniversary was yesterday, so we got some take-out from a favorite restaurant locally last night, and today after breakfast, we drove to the beach (about 2 hours away). It was 4 hours of driving for just 3 hours there (we had to leave in time for my afternoon nap and to get home in time to check on his dad), but it was a lot of fun.

A short trip to the beach: I love the ocean!

We walked on the beach, which is my happy place! I love the ocean--the sound of the waves, the smell of the salt air, the horizon separating blue sea and blue sky. It was lovely and relaxing. Afterward, we had an outdoor lunch at a waterfront restaurant, took a very quick walk through town and returned home. Even the drive was nice since we have been missing our road trips!

Celebrating our anniversary today at the beach

Just these two tiny trips have really helped my emotional well-being. Between my bad crash and everything else going on, I was getting kind of down at times and really missing our camping trips and travel. Just doing something outside of your normal routine for an hour or two can really make a difference and provide an emotional lift. I wrote more about the lift that nature can provide in Weekly Inspiration: Outdoor Living (with more photos from our camping trip).

What I'm Reading and Watching

I am currently enjoying an annual fall reading challenge I do every year, #RIP XV, where you just read darker stuff in September and October: things like mystery, suspense, thriller, paranormal, etc. In September, I read a true crime book, The Feather Thief: Beauty, Obsession, and the Natural History Heist of the Century by Kirk Wallace Johnson. I read it for my book group (which just restarted meeting via Zoom), and like many book group choices, I probably wouldn't have chosen it myself but am so glad I read it! It's a fascinating, truth-is-stranger-than-fiction story of a young musician who broke into the British Natural History Museum and got away with priceless collections of birds. Everyone in our group loved it, and we had a lot to talk about! You can read my review at the link.

Now, I am immersed in a quiet suspense novel, The Lock Artist by Steve Hamilton, which won the Edgar Award for Best Novel in 2011. I gave it to my husband, and now I am enjoying it (the best kind of gift!). It's about a young man who can't speak and is an expert safecracker, and the story of how both of those things came about. So far, it's been engrossing and suspenseful, though it is a quiet kind of thriller, with no gore. I'm really enjoying it.

We enjoyed a movie this past weekend, Enola Holmes, which is new on Netflix. It's about Sherlock Holmes' much-younger sister, who shows some of his same cunning and courage when she runs away to London on h

er own to find her missing mother. Millie Bobby Brown (of Stranger Things fame) plays Enola, and she is wonderful in the role! It's a fun, light movie that we both enjoyed; you can read my full review and watch the trailer at the link.




How are YOU doing this week?
And what are you reading, watching, and enjoying?

Leave a comment below (most are coming through now), or you can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.

Monday, September 28, 2020

Movie Monday: Enola Holmes

I've been waiting for the new Netflix movie, Enola Holmes, based on a series of YA novels about Sherlock Holmes' sister, ever since I heard that Millie Bobby Brown, of Stranger Things fame, stars in it. So, we watched it this weekend, soon after its release, and enjoyed this light, fun story.

Enola Holmes, played by Brown, is the much younger sister of Sherlock (played by Henry Cavill) and Mycroft (played by Sam Clafin), but she barely knows her brothers, who left home when she was young. Now sixteen years old, she has grown up under the tutelage of her mother, Eudora, played by Helena Bonham Carter, a nontraditional woman for her time. Eudora has not only taught Enola history, science, math, and literature but has also taught her daughter archery, ciphers, self-independence, and even how to fight. The two women are very close, so Enola is devastated to wake up one morning to find that her mother is gone. Sherlock and Mycroft come back home to take over, and older brother Mycroft takes it upon himself to be Enola's guardian, while he puts Sherlock in charge of finding their mother. Mycroft believes that a young woman like Enola should be in finishing school to become a proper lady, but Enola has other ideas. She dresses up like a boy and makes her escape from the family estate to London, where she is sure her mother has gone. Along the way, she meets a boy about her age named Lord Tewkesbury, played by Louis Partridge, who is also running away from his family. The two join forces for a bit, and Enola--skilled in many ways but unfamiliar with the outside world--takes on London in order to track down her mother. Along the way, she encounters bombs, gunpowder, a murderer, and many other hazards.

This movie is just plain fun! The tone is light and playful, with plenty of humor. Of course, Brown is outstanding in her role as Enola, and the supporting cast is very good, too. Enola's adventures take her on a twisty and unpredictable path full of danger, with non-stop action on screen, though the film also takes the time to build her character and give her depth. She's a delightful, engaging girl, and we were rooting for her from beginning to end! This movie has it all: mystery, adventure, action, humor, and even a touch of romance. It's a great movie for all ages and will give young girls a worthy heroine.

Enola Holmes is a Netflix original movie, perhaps the first of a series?, so it is available exclusively on Netflix. I haven't yet read the books it is adapted from, but I have heard they are wonderful.

[NOTE: I did, however, read the first book in another young female Holmes series, A Study in Charlotte, featuring Charlotte Holmes, a modern teen girl descended from Sherlock who goes to boarding school in Connecticut and meets Jamie Watson, descendant of that Watson. I enjoyed it very much on audio, and you can read my full review (no spoilers) and listen to a sample of the audio at that link.]

Sunday, September 27, 2020

Weekly Inspiraton: Outdoor Living

One thing in my life that inspires (and calms) me more than anything else is being outdoors. I've written about this many times here on my blog and elsewhere, and you can read my tips in the post, Camping and Enjoying the Outdoors with ME/CFS. Check out this post which includes an article I wrote for ProHealth website on The Restorative Power of Nature, which was also edited and included in my book (notice the blue sky photo I choose for my book cover!). As that article explains, research shows that spending time outdoors has amazing positive effects on both physical and mental health. And for those of you who can't manage an outing to a park or are even bedridden, there's good news! Even just looking out a window or looking at photos of nature can have these same positive effects. I will share some of my own photos from this week so that you can enjoy and benefit from our outdoor adventures, too.

This past week, my husband and I were finally able to get out for a very quick camping trip with our pop-up camper, and it was so incredibly peaceful and calming for me! Besides my downturn these past six months, we are also caring for my husband's 95-year-old father. His cognitive function worsened severely with the isolation of lockdown, to the point where my husband was having to visit him twice a day, just to make sure he got up for his meals at least. So, with all that plus the pandemic, we have missed our usual relaxing camping trips this year. So, this week, we went to a local state park, Elk Neck State Park in Maryland, less than an hour away, and attempted a little mid-week day-and-a-half getaway!

Water view from our campsite

It was not entirely successful, since my father-in-law called the first morning with a bad toothaches, so we spent some time on the phone to him, the dentist, and our sons. But it was still incredibly rejuvenating just to be outdoors for a little bit and away from to-do lists, laptops, internet, etc. The campground was mostly empty, with just a few waterfront sites occupied, and we had our own site with a gorgeous water view.

A mostly empty campground meant plenty of quiet!

We fell asleep to the sounds of crickets and water lapping against the rocks near our campsite - ahhh, complete tranquility! And what a view to wake up to. This is one thing I love about our pop-up camper--the way you can just unzip the canvas and be surrounded by the outdoors even while you're inside.

Sleeping surrounded by nature

I felt well enough (!) to manage an easy walk to the beach, on a trail that led right from our campsite. This is one of our favorite things about this park: these secluded beaches, accessible only from the campground loops. We enjoyed a quiet stroll along the beach, watching the geese and cormorants (and one bald eagle!), listening to the gentle waves rolling in and enjoying the sunshine. This is the Elk River which empties into the Chesapeake Bay just past the park, which is on a peninsula. 

Peace and solitude on the beach

I wasn't up to it this time, but there is also a lovely trail out to the point of the peninsula, with a lighthouse and amazing views out into the Chesapeake. The photo is from a previous trip.

Us at the Elk Neck Lighthouse - Sept. 2018

Mostly, though, we just relaxed and enjoyed the quiet peacefulness. I did a lot of reading!

Relaxing and reading outdoors

At night, we enjoyed a campfire, complete with a foil dinner cooked on the fire and--of course--s'mores for dessert.

Enjoying an evening campfire

I ended our trip with my usual morning yoga stretches with this amazing view.

Yoga and water views!

We had to rush back home so my husband could take his dad to the dentist, but that inspiring calm and quiet stayed with me.

Try it yourself! Open a window and listen to the birds (that's what I'm doing right now). Lie outdoors in a lounge chair and look up at the sky and clouds. Really focus on your senses and the natural world around you to reap the benefits and feel calmer and more peaceful.

Have a lovely day ... and get outside!

Sunday, September 20, 2020

Weekly Inspiration: Chronic Illness Bloggers

Every once in a while, I like to share inspiration from other chronic illness bloggers around the world, and I am due for one of these round-ups. Anytime you are looking for your own inspiration, visit the Chronic Illness Bloggers page on Facebook and scroll through the latest posts from bloggers (including me).

Here are a few inspiring posts I've read this week and found helpful:


Amber of The World Sees Normal blog wrote a very thoughtful and supportive post this week: It's OK to Not Always Be OK. She writes in a very honest and straightforward way and addresses feelings we all have at one time or another, regardless of which diagnoses we are dealing with. Her post really spoke to me.


The Dreaming Panda: My Neuroimmune Journey also wrote a new post this week--Self-Sabotage: Peeling Back the Onion of Baggage from Being Sick. It's a very powerful and honest post, where she shares her journey to improve her mental well-being while fighting multiple illnesses.She also talks about a concept that I wrote about in my book--balancing acceptance and hope--and her own personal struggles with that.


Shelley of the Chronic Mom Blog has a guest post this week from Megan Clark Neville, a Texas librarian who has been chronically ill for the past 16 years. Megan's post, When You Have a Chronic Illness, You Are Enough, shares some of the same thoughtful, supportive tone and message as the first two blog posts listed here. She talks about feelings of shame, treating ourselves with kindness, and focusing on being rather than on doing. 


And for something a little different, check out Through the Fibro Fog blog by Claire, who writes about The Fear of Slowly Coming Out of Lockdown with Chronic Illness, an excellent and thoughtful post about our current situation, as it applies to those of us with chronic illness. She talks about her experiences throughout the pandemic, from the first inklings of what was happening to today, from the perspective of chronic illness. 


I hope you found these blog posts as interesting, inspiring, and relevant as I did--and maybe discovered some new blogs to follow!

Let me know your thoughts. Leave a comment below (most are coming through now), or you can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.

Friday, September 18, 2020

News from Our House - Sept 18, 2020 - Finally, a Good Day!

I haven't written an update post lately because I've been feeling seriously awful a lot of the time (and mildly awful the rest of the time), but today has been a good day--the first really good day in a long time. Here's the scoop from our house lately:


Up, Down, and All Around

My rollercoaster year continues! The past two weeks have been especially rough for me, with multiple days each week where I am completely crashed--what I call "flat days" (because I can barely get up off the couch). Even a single day this bad had become very rare for me in recent years, so this trend has been especially challenging for me. Even worse, it often feels like the worst days come with no rhyme or reason. I had gotten to a nice, steady dosing of a half pill a day with my antivirals and felt like I was doing better, so this was a nasty surprise.

I was flat on my back and achy all over this Wednesday, so I decided to skip my half-pill antiviral dose--maybe I needed a break because I was Herxing? But Thursday, I woke (barely, an hour later than usual) feeling even worse, with horrible aches and exhaustion all day. OK, that didn't work. So, yesterday, I went the other way and upped the dose to two half-pills a day (for a total of 1 pill a day, which is the intended dose). And guess what? I still slept an hour later this morning, but I woke up feeling good. In fact, I felt great most of today! Shocked but happy, I got on with my day, which included an out-of-state doctor's appointment with my son. 

Late summer bounty from the farmer's market

That trip--an hour's drive each way plus about two hours in the office sitting up in chairs--usually wipes me out, but I actually felt good throughout it today, even well enough for a stop at a lovely Amish Farmer's Market on the way home, for some last-of-summer fruits and veggies (and some goodies, too)! We got home about 2:30 pm (usually nap time for me) for our daily smoothie. Granted, when I finally did take my nap at 3:30, I was ready for it, but to feel that good for so long today after the week I've had felt like nothing short of a miracle!

I'm a bit achy now at 6 pm, so we'll see what tomorrow brings ...


My Son's Improvements

I am way overdue for a detailed update on my son's multiple health problems, but you can read about how he hit bottom last year in New Diagnoses and New Treatments - ME/CFS and Lyme

Fast-forward about 18 months, and I took a look at how he's doing compared to that time last year, in preparation for today's two appointments. We track how we feel each day on a 1 to 5 scale (1 = great and 5 = awful; you can see details of how we track here), and I graphed his monthly averages. In 2019, his "how he felt" number was dragging around 3 or even lower some months. That's not so good. So far, in 2020, he's been consistently up around 2.5 (some months even better), so that's clear improvement! 

To look at the data another way (sorry--used to be an engineer!), I also track and graph % of time crashed. On our scale "crashed" means days when he's only at a 4 or 5--those flat days when you can barely get up, let alone get anything done. In 2019, his % of time crashed each month ranged from about 5% to 50%, meaning that some months, he was incapacitated half the time. That's rough. So far in 2020, his % crashed has ranged from 0% to about 17%, a huge improvement! He's had two months this year without a single crash day. In addition, he's noticed that he's able to be much more active--without crashing--now, driving 3 hours back and forth to his girlfriend every other weekend, working one night a week, and seeing friends more. I do also track exertion level, but I haven't calculated averages or made graphs yet!

So, while it can often feel, day to day, like things are the same, he has definitely shown some great progress in the past year and a half, and his medical team is committed to continuing that trend.


Don't Miss:

Some good information in the larger ME/CFS world last week. Check these out:

  • Heart Rate Monitoring and Physical Therapy for ME/CFS - Physios for ME made a 2-video podcast about how to use heart rate monitoring and safely do physical therapy with ME/CFS patients. I appeared in both videos, and there is some excellent information here, for both physical therapists/physios and for patients, plus additional information from my blog posts and articles to help ME/CFS patients to better manage their conditions and prevent post-exertional crashes.
  • New Website from U.S. ME/CFS Clinician Coalition - This group of top U.S. ME/CFS experts who have worked together for many years to stay up-to-date and offer their patients the best treatments formed this ME/CFS Clinician Coalition in 2018 and put out a paper on Diagnosing and Treating ME/CFS, but this new website goes a big step further in providing doctors all over the world with a one-stop website with loads of great information on how to diagnose and treat ME/CFS, including links to additional information on diagnostic criteria, other treatment info, OI, EDS, MCAS, and even disability and school accommodations. It's an outstanding resource. Now, it's time for us to help get the word out! Share this excellent website with your doctors.


 What I'm Reading and Watching

As always, I ended my annual Big Book Summer Challenge on Labor Day (the first Monday of September). It was a record-breaking year for the challenge, with more than double the number of participants, and I enjoyed reading and listening to lots of Big Books (400 or more pages) this summer. You can read all about my books and the challenge itself here. If you missed out this summer, join the fun next May!


You might think I am sad that Big Book Summer is over, but September marks the start of another favorite reading challenge for me, the Readers Imbibing Peril (RIP) Challenge! It involves reading books in September and October with darker themes, like thrillers, mysteries, suspense, supernatural, and more (doesn't have to be horror or ghost stories, just anything darker). You can read about it--it's super-easy to join the fun this year--and see some of the books I'm choosing from at that link. I love everything about fall: the cooler weather, lower humidity, wearing jeans and sweatshirts, campfires, and ... the books!

We recently finished a new favorite TV show, Russian Doll. I've been hearing rave reviews of it since its release last year, and we finally got around to trying it. We both loved it and ended up binging its short season in a week! It's about a woman named Nadia who keeps reliving her birthday over and over, dying in different ways each time and restarting back at her birthday party. It's twisty, fun, dark, and hilarious with a great cast. Check out my full review and the awesome trailer at the link.

How are YOU doing this week?
And what are you reading, watching, and enjoying?

Leave a comment below (most are coming through now), or you can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.