Thursday, February 23, 2023

Chronic Illness Vlog 2-21-23: A Week of Small Celebrations

I haven't posted a vlog since December, so I recorded one last week. My chronic illness vlogs are honest views of my life with ME/CFS and Lyme, shown through short video clips made over the course of a week.

Last week, I was feeling pretty good, with just a few low-energy days. Mostly, though, given the time of year, it was a week filled with joy due to celebrations of smaller holidays: Superbowl (just before I recorded this), Valentine's Day, and Mardi Gras. You can check out my video, Celebrate Everything, Big and Small, for my tips on adding joy to your life by celebrating the small stuff, with minimal effort and energy!

This vlog also includes some peaceful, calming video outdoors in nature.

You can watch last week's vlog on YouTube or below:

So, how was YOUR week last week? Do you have traditions for small celebrations?

Share your thoughts in the comments below.

Monday, February 20, 2023

Movie Monday: CODA

As usual, we're a bit behind, but my husband and I finally watched the movie CODA last week. In 2021, it won Oscars for Best Motion Picture, Best Adapted Screenplay, and Best Supporting Actor (for Troy Katsur). Now we know what all the fuss was about! We both loved this funny, uplifting movie about a family of deaf fishermen in New England.

As a Child of Deaf Adults (CODA), Ruby, played by Emilia Jones, is the only hearing person in her deaf family. They live on the New England coast and make their living fishing. Early every morning, Ruby heads out in their boat with her father, played by Troy Katsur, and her older brother, Leo (played by Daniel Durant), before she heads into town for high school. For as long as she can remember, Ruby has been the interpreter for her father, brother, and mother, played by Marlee Matlin. Her family is quite isolated from the rest of the town, though they are very close-knit and loving. In her senior year of high school, Ruby signs up for choir on a whim. She has always loved to sing, but in the midst of her deaf family, she has no idea if she's any good. The music teacher, Bernardo Villalobos, played by Eugenio Derbez, immediately recognizes Ruby's raw talent. He begins training both her and Miles, played by Ferdia Walsh-Peelo from Sing Street, another excellent movie), for their upcoming concert, as well as for an audition at the prestigious Berklee School of Music. He's convinced Ruby can get in, and the more she sings, the more passionate she becomes about it. But her family needs her more than ever, with several crises occurring in the local fishing community. Ruby is torn between following her dreams and finally becoming her own person and caring for the family she loves.

When I thought back to this movie, I realized it's a familiar coming-of-age movie theme: the adolescent finding her identity and learning to separate from her family. The setting, of course, is quite original: a hearing child in the midst of a deaf family who rely on her. That's not all that makes this movie special, though. The entire cast is outstanding, and glimpsing the interior lives of a deaf family is fascinating, especially in one scene completely from their perspective, with complete silence in the midst of a crowd. The writing is also excellent (and award-winning), with each character fully developed and plenty of humor blended with the drama. Even the physical setting, on the rocky coast in a fishing village, is beautiful and unique. All together, this makes for an engrossing package: a moving, inspiring, funny family drama that kept us rapt and left our hearts soaring.

CODA is an Apple original movie and is available on Apple TV.

If you are looking for other warm, inspiring, funny family dramas, try:

Captain Fantastic - warm, funny story of quirky family facing challenges

Lady Bird - tender, realistic, funny coming-of-age story

The Peanut Butter Falcon - Original, heartwarming & funny, about found family.

Grandma - warm, funny, heartbreaking movie about eccentric grandma & her granddaughter 

This is Where I Leave You – warm, hilarious adaptation of the novel

Thursday, February 16, 2023

Throwback Thursday: 17 Years of Blogging!

Seventeen years ago today, two wonderful things happened: my amazing nephew was born and I started this chronic illness blog! Back then, ME/CFS was often known as CFIDS (chronic fatigue immune dysfunction syndrome), in an effort by patients, experts, and advocates to bring some legitimacy to our much-maligned disease and more accuracy to its name.

You can read my very first blog post, Our Approach to Living with Chronic Illness, at the link. It's interesting to me to see that my overall philosophies have not changed: a balance of acceptance and hope, finding small joys in everyday life, staying within our limits, plus finding treatments that help. You can even see the origin of the title of my book, Finding a New Normal: Living Your Best Life with Chronic Illness in this post!

I started the blog as a sort of online journal (you can also see the precursor to this blog on my original LiveJournal account!). I didn't expect much, but I wanted to share our story and hopefully connect with a few other patients. I was quickly stunned by the outpouring of support from patients around the world who shared so many of our experiences in their own lives. 

It was the start of what turned into a huge effort to provide support to others (while also supporting myself and my family) that now includes multiple support groups, both locally and globally, online; a YouTube channel; and interaction with others patients on social media platforms and beyond.

All of this has greatly improved my life in so many ways. This illness can be so lonely and isolating, and it's been magnificent to connect with so many people all over the world.

Where were YOU 17 years ago today?

Tuesday, February 14, 2023

TV Tuesday: Poker Face

My husband and I have a new favorite TV show that we are absolutely loving. Poker Face stars one of our favorite actresses and is suspenseful, funny, and just plain fun.

The fabulous Natasha Lyonne (from Orange is the New Black and Russian Doll, two other outstanding shows) stars as Charlie Cale, a woman with an unusual talent: she can tell when someone is lying. For awhile, Charlie made money playing poker, but she became renowned (or rather, infamous) rather quickly and was soon banned from high-roller poker games after winning too much money. As the show opens, Charlie is living a quiet life working in a small, family-run casino. No more poker for her; she's just earning her living as a waitress in the casino and living in a trailer. When a friend of hers turns up dead, and Charlie can tell someone involved is lying about it, she gets involved in finding out what really happened. Meanwhile, the casino's manager, played by Adrian Brody, wants Charlie to use her poker/truth-telling talents for his own gain, to watch a high-roller game being held at the casino and help his plant win. Let's just say that things go very wrong along the way. By the end of the first episode, Charlie is on the run, with the casino's muscle, Cliff (played by Benjamin Bratt), chasing her. From then on, each episode finds Charlie in some small out-of-the-way place, with a new job, just trying to live a quiet, peaceful life. In each place, though, she stumbles on another murder and feels compelled to make sure the bad guys pay and the good guys are redeemed.

This is something of a classic murder mystery show, with a twist. Charlie usually ends up solving each crime the old-fashioned way, by talking to people and finding clues, but there is often some sort of innocuous comment someone makes that Charlie knows is a lie and makes her realize there was a murder (versus an accident or natural death) in the first place. The mysteries are twisty and unusual. The best part of this show, though, is its star. If you've seen Natasha Lyonne in either of her previous big shows, you know she steals the scene every time. She's an absolute delight to watch on screen, and here, she is at her laid-back, snarky best. It's easy to root for her. Plus, each episode has some big name guest stars in fabulous roles, like Judith Light as an aging hippy in a retirement home and Ellen Barkin as a washed up actress who wants one last hit on-stage in a regional theater. Every episode is loaded with clever humor, great writing and acting, and a fun mystery to get to the bottom of. We very quickly caught up on the first six episodes and are anxiously awaiting the next one!

Poker Face is a Peacock original series and is available on Peacock exclusively, airing on Thursdays.

Friday, February 10, 2023

Extensive Evidence That GET & CBT Are Harmful to ME/CFS and Long-COVID Patients

That headline should be nothing new to the large and growing population of patients with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and long-COVID, also known as PASC (post-acutes equelae of COVID-19). But, unfortunately, far too many doctors and other medical professionals worldwide continue to urge their ME/CFS and long-COVID patients to exercise and/or prescribe traditional physical therapy, in spite of evidence that these practices are often harmful to these populations.

Now, there is a single scientific paper that pulls all that evidence into one short summary: Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, published in Advances in Bioengineering and Biomedical Science Research in January 2023.

This paper references nine different research studies or scientific papers previously published that all come to the same conclusion: that forcing patients with ME/CFS or long-COVID (PASC) to exercise makes them worse, and that it is unethical for doctors to choose any treatment path that could be harmful.

Just the fact that this many previous studies and papers have been published--and, as the author points out, as a result, the UK's NHS revised its NICE guidelines in 2020 to reflect these findings--should mean that doctors are no longer causing harm to their patients in these ways. Unfortunately, that's not the case, and doctors all over the world continue to urge their ME/CFS and long-COVID patients to be more active, exercise, and are even still prescribing traditional physical therapy.

So, if you have encountered one of these misinformed medical professionals who still insists on recommending increased activity, exercise, GET (Graded Exercise Therapy), or traditional physical therapy, click that link above, print the brief paper, and share it with him or her. The best way for us to help change these outdated and harmful practices is to help spread the word.

And once you've educated your doctor that exercise and GET are harmful, help him or her to understand how they can help you with real medical treatments instead. My Effective Treatments for ME/CFS (and Long-COVID) summary is a great place to start. The treatments that have helped my sons and I the most are almost all inexpensive and readily available through any primary care doctor/general practitioner (and there are even some treatments you can try on your own, though it's always best to do so under a doctor's supervision).

I've also written some articles on treating ME/CFS and long-COVID that are perfect for sharing with medical professionals because they are brief and include scientific references at the end (and are written so you can understand, too)--and these are the best treatments to start with, for maximum benefit:

Correcting Sleep Dysfunction in ME/CFS

Treating Orthostatic Intolerance/Dysautonomia in ME/CFS (including POTS)

The best part? If you start by treating Orthostatic Intolerance (OI) effectively, then you often can begin to tolerate increases in activity and small bits of exercise, at your own pace while listening to your body and wearing a heart rate monitor. But you need to treat the underlying causes of exercise intolerance (including OI) first.

Help spread the word! Print a copy of this new paper to share with your own medical professionals!

Monday, February 06, 2023

Movie Monday: A Man Called Otto

This weekend, my husband and I enjoyed a staycation, including a rare trip to the movie theater! We saw A Man Called Otto, based on the novel A Man Called Ove by Fredrik Backman. I read (and loved) the novel, my husband didn't read it, and we both thoroughly enjoyed this warm, poignant, very funny movie adaptation.

Otto, played by Tom Hanks, is a grumpy older man who lives in a townhouse community, located in Pennsylvania. He's been forced to retire from a job he loved, and Otto is someone who needs to feel useful. Each morning, he "does his rounds" of the neighborhood, checking that everyone is parked where they should be, that the recyclables are properly sorted, and that everyone is following the rules. But Otto has a secret. With his wife and his job both gone now, Otto has no reason to keep living. He's determined to end his life on his own terms. Early in the movie, he calls to cancel his electric, gas, and phone services to leave no loose ends. But life has other plans. New neighbors move into the neighborhood, a Mexican-American family. Marisol, played by Mariana Travino, is hugely pregnant; her husband, Tommy (played by Manuel Garcia-Rulfo), is a nitwit in Otto's eyes. And they have two adorable little girls. This family plies Otto with kindness, requests for help, and delicious food. Throughout the movie, flashbacks in Otto's memory help to fill in the blanks about how he came to be where he is now. With the help of several crises, Otto's icy exterior gradually thaws a bit, and he finds a reason to live.

Like the novel it's adapted from, this movie is hilariously funny, while also including some dark, difficult emotions (it does, after all, include several suicide attempts). Tom Hanks, of course, does a wonderful job of bringing the curmudgeonly Otto to life on screen, and Mariana Travino is excellent as the warm, persistent Marisol. It's a faithful adaptation of the book, following the plot pretty closely, with the exception of Ove becoming Otto and being located in the US instead of Sweden (though there's a nod to Otto's Swedish heritage in the movie). My husband and I both laughed a lot and teared up at the end and had a thoroughly enjoyable afternoon at the movies.

Thursday, February 02, 2023

Donate While You Shop: New Changes!

Amazon made a surprising announcement recently: as of February 20, they will be discontinuing their long-running AmazonSmile initiative. AmazonSmile allowed customers to select their own charity and then donated 0.5% of every purchase made to that charity. According to my latest update in December, Amazon sent a check to Solve ME/CFS (my selected charity on the site) for the last quarter of 2022 for $1367, and over the lifetime of the program had sent $24,159. As you can see, that's a substantial donation! However, Amazon said the program wasn't "having the impact we'd hoped." 

While this is a disappointing move from the world's top online seller, there are still other ways to donate to your chosen charity while shopping (which doesn't cost you anything extra):

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. Just register on each site and choose you charity. You can also earn by using the sites to search. To show you how well this works, my iGive page currently shows that I have selected Solve ME/CFS as my cause, that I have personally earned and donated $296.31 to them, and that they have earned a total of $6583.88 from all supporters! Isn't that amazing? Over $6500 just from clicking a button before we shop online.

I'm hoping that perhaps Amazon will sign up for one of these programs, but that remains to be seen.

For a list of great ME/CFS charities and more ways to support them, check out my Giving Tuesday post from November.