Friday, September 30, 2022

NEW! Monthly Newsletter

I started something new last month--something I've been meaning to do for years that my mailing list provider finally set up--and mailed out a newsletter to my subscribers.

My first monthly newsletter, in September, included:

  • Quote of the Month - something I read that resonated with my life with chronic illness
  • Blog of the Month - introducing a chronic illness blog I enjoy
  • From My Book - news (like sales or new formats) or a quote from my book
  • Videos and blog posts you may have missed

But I would love to hear what YOU want to see in my newsletter! I'm thinking of adding a quick personal update this month.

To receive my newsletter (and notifications when a new blog post is published), sign up at this link or by clicking the Subscribe button in the sidebar of the blog anytime. If you sign up now, you'll receive my October newsletter, going out in a few days.

What would you like to see in my monthly newsletter?

Tuesday, September 27, 2022

TV Tuesday: Fall TV Preview

My husband and I are excited for the fall TV season, bringing back some of our favorite shows with new episodes, along with a few new shows for us to try. We still watch a lot of network shows via cable On Demand, but most of them are also available through streaming channels and/or on the network website, so I'm including both network and streaming shows in this post. Links go to my reviews, where available. Here's what we're looking forward to:

Returning Favorites:

Medical Shows

The Resident, starring Matt Czuckry, started its sixth season last week. We were fans of Czuckry from The Good Wife, and have enjoyed watching him in this hospital drama set in Atlanta. It was questionable last spring whether it would be renewed for a sixth season, so I figured this was its last ... but the one of the co-creators was quoted as saying, "It could go on and on" like E.R., so who knows?

New Amsterdam stars Ryan Eggold (who we enjoyed in Blacklist) as the super-enthusiastic, "we can do anything" head of this fictional NYC hospital. This is one my husband is tiring of, but I still enjoy the actors, humor, and drama. It returned last week for its fifth and final season.

Grey's Anatomy returns next week for its 50th season ... ha ha, just kidding! It's only season 19! This is still a favorite of mine. During my recent relapse of my chronic illness, I have been amusing myself while stuck on the couch by starting back at season 1 and rewatching old Grey's Anatomy, and I just love it so much! It has everything: drama, humor, suspense. It makes me laugh and cry! The past two seasons have been a bit depressing--which I'm sure is what my husband dislikes (I personally like a good fictional cry)--but the trailer for this new season looks like they will once again be focusing on a new set of interns and getting back to a lighter touch, which is how the show started, so this should be fun!

Action and Suspense

My husband still watches the medical shows mainly for my sake. What he likes best are shows with action, suspense, and maybe a bit of science fiction. I like those, too. Here's what we're excited to see again:

The Rookie came back for its fifth season on Sunday, and I can't wait for my husband to return from his business trip so we can watch it! This is our current favorite show. It stars Nathan Fillion as a 40-ish rookie with the LAPD (though at this point, he's past his rookie stage). Yes, it's a police drama featuring crime, mysteries, action, and suspense, but it's also about the lives of the police officers and has a wonderful sense of humor. If you haven't watched it yet, give it a try!

Big Sky came back last week for its 3rd season. This is a crime drama featuring two female detectives in the big sky country of Montana. Each season has an on-going mystery/investigation. Season 1 dealt with human trafficking and a creepy serial killer, Season 2 focused on two drug syndicates. Season 3 kicked off with a missing hiker and some mysterious goings-on at a local outdoor resort where Reba McEntire plays the resort's host. Good suspenseful start!

La Brea
is back for its second season starting tonight. The premise is that a giant sinkhole opened up in LA where the La Brea tar pits are, and a bunch of people fell through ... and into a prehistoric world. Those down there want to figure out how to get back to the modern world, while they try to survive, and those left behind are trying to figure out how to get them back. We always enjoy these kinds of suspense/action shows with a sci fi twist, but they have a bad track record of not lasting long enough for a satisfying conclusion! So, we're glad this one is back for a second season.

Yellowstone returns in November for its fifth season. We love this modern western about a ranching family in Wyoming, starring Kevin Costner, but it airs on Paramount Network (which is, apparently, different from Paramount Plus??). It's quite confusing, but we know we'll have to wait a month or two until it's available On Demand or though streaming. It's worth the wait!

Amazing Race offers a different kind of action and suspense! It returned last week for its 34th (!) season. We watched it with our sons when they were young (great for families), then skipped a bunch of seasons, but we got back into it last season. My childhood best friend also loves the show, and last season we discovered the fun of texting each other while we watch it from our separate states! This is the only reality TV show we enjoy.

Handmaid's Tale is back for a fifth season ... and they've just announced a sixth season is coming! This is one of the best shows on TV ... ever. Seriously. Elizabeth Moss stars as Offred, the main character from Margaret Atwood's well-known dystopian novel. Everything about this show is outstanding: the writing, the acting, cinematography, twisty plot. The first two episodes of this new season blew our minds!

New Shows To Try:

I know, that's already a lot of shows to juggle! But there are always shows ending, and it's fun to watch some new ones. We're not bingers. We still like to watch TV the old way, watching one episode a week so that every night brings something different. Variety is the spice of life! With that in mind, we plan to try these new shows:

Quantum Leap premiered last week. This classic show from the 80's/90's has been rebooted and modernized with a whole new cast. You probably know the premise: a scientific team has developed--but not perfected--time travel technology, and one of their team, in this case played by Raymond Lee, is stuck "leaping" through time and space, where each time, he needs to figure out how to save someone in order to leap again. I love anything to do with time travel, but I never watched the original! We enjoyed the first episode set in 1985 last week.

So Help Me Todd is a detective/crime show with a twist: it features a mother-son team. Marcia Gay Harden plays a high-powered lawyer who helps out her son, played by Thomas Cadrot, by hiring him as an investigator for her firm. It's a great cast and it looks like it has a sense of humor (always a plus), so we're going to give it a try.

Alaska Daily premiers next week on October 6. It stars Hillary Swank as a journalist who moves to Alaska to start over and ends up investigating the case of a missing girl. It looks great, and we love this sort of thriller/crime drama.

Reboot is something different for us, a comedy (we're also currently enjoying Hacks on HBO Max). This is about the behind-the-scenes of a reboot of a 90's sitcom. It has an all-star cast, including Paul Reiser, Keegan-Michael Key, Rachel Bloom, Judy Greer, and more. It got good reviews from the crew at Pop Culture Happy Hour podcast, it's from the co-creator of Modern Family, and the trailer looks like fun:


What shows are you looking forward to this fall?


Friday, September 23, 2022

Finding a New Normal: Happiness & Satisfaction in a Life with Chronic Illness

Once again, I have not been able to write much here on the blog because I am still very severely crashed, for over a month now. In fact, these past two weeks have been even worse than before, which is discouraging. I still have no idea what caused this sudden worsening, though I have been working with my ME/CFS specialist to try a few new treatments.

If you're a regular reader, you know that I normal function fairly well, thanks to treatments, and that crashes--from both over-exertion and from infectious triggers--are usually pretty rare for me now. A crash this bad and lasting this long hasn't happened to me in many years, since the very early years of my illness. So, I continue to "rest aggressively," enjoy some books, and watch a lot of old Grey's Anatomy episodes!

Luckily, last month, before this crash, I wrote two guest posts for other blogs that have recently been published, so I'm sharing those here with you today, sitting up for ten minutes before I return to my usual horizontal position.

The Despite Pain blog is written by Liz, who writes a wide variety of helpful, informative, and inspirational blog posts. Be sure to check out the rest of her blog. My guest post, Finding a New Normal, can be read at the link, and you can find the rest of Liz's blog's features in the menus there.

I also wrote a guest post for My Rockin' Disabled Life blog, hosted by Sarah. She often features guest posts by other chronic illness writers, to highlight a wide variety of different chronic conditions and disabilities. I was honored to be included! My post there is called Finding Happiness and Satisfaction in a Life with Chronic Illness. You can read my post at the link, then explore the rest of Sarah's blog.

Both of those guest posts include practical tips, adapted from my book, Finding a New Normal: Living Your Best Life with Chronic Illness.

And now, I'm going to take my own advice: accept where I am today, lie down to listen to my body, and find some small joys in the lovely fall breeze coming through the open window, a hot cup of fragrant lemon herbal tea, and ... perhaps another episode of Grey's Anatomy to make me smile!

Wednesday, September 14, 2022

Chronic Illness Vlog: Treatments, A Better Week & Crashed Again!

My health continues to be very up and down--well, mostly down. It's a long, complicated story, and I want to write a full update for the blog, but I haven't had the energy for that. A change in medication caused a massive shift in hormone levels for me, and I think I am still adjusting to that and waiting for my body to stabilize.

In the meantime, I have another weekly vlog that tells another piece of the story. As I edited this video yesterday, I realized that I actually had a pretty good week Tuesday through Friday, but then--again--I crashed badly on the weekend. This time, it was even more severe, and I was mostly bedridden/couchbound for four days. Today, I am sitting up partially again in the recliner, so that is a huge step forward, but I still have symptoms, very low energy, and am feeling very fragile. I'm trying to be very, very careful and take it easy and extremely slow.

So, here's my weekly chronic illness vlog, where you can see for yourself a very honest view of my life last week. You can watch it on YouTube at this link or below:

I would love to hear from YOU!

How was your week and how are you doing so far this week?

What helps you get through the rough times?

Wednesday, September 07, 2022

Chronic Illness Vlog: Crashed! Why?

My weekly vlog about life with chronic illness (especially ME/CFS, orthostatic intolerance, and Lyme disease) from last week is available now. I had a pretty bad crash week, with most of my days spent in bed, on the couch, and in my recliner. As usual, my analytic brain was hard at work, trying to figure out WHY I crashed, so the video includes my theories and what I might do about it. Plus a few things that made me smile and brightened my otherwise difficult week.

You can watch the video directly on YouTube or I will include it here, too.

The good news is that the past two days have been a bit better for me. I am still struggling with a bit of achiness, but I was able to leave the house yesterday (three times!) and get some writing work done the past two days (I'm starting some new freelance work for Open Medicine Foundation that I'm excited about--more on that later).

So, fingers crossed that this week continues to be better than last. If nothing else, our days of rain and storms should end tonight, and clear skies always help me!

How was YOUR week?

What cheers you up & helps you feel better when you're crashed?

Monday, September 05, 2022

Movie Monday: The Lost City

I've been pretty badly crashed all week (and much of the last two weeks), so our holiday weekend was very low-key. I wrote that blog post about having fun on Saturday, and I'd hoped to maybe take a short hike with my husband or get together with friends for dinner, but I was in rough shape. So, on Sunday, we decided to watch a movie--in the middle of the day! Normally, I look for award winners, check reviews and viewer's ratings, etc. This time, I just wanted something light and fun. I always enjoy actress Sandra Bullock, so I chose her latest movie, The Lost City, and it delivered.

Bullock plays Loretta Sage, a reclusive romance writer. Loretta writes a series of romance novels about a female archeologist, Dr. Angela Lovemore (yup. laughing yet?). Lovemore's romantic interest in the novels is Dash McMahon, and ever since the first book, a handsome man named Alan (played by Channing Tatum) has been the cover model, so that millions of fans think of Alan as Dash. Sales have started lagging, though, so Loretta's editor, Beth (played by Da'Vine Joy Randolph) wants both Loretta and Alan to go on a huge book tour to promote the latest addition to the series. Loretta is clearly depressed and unused to being in public; she actually did work as an archeologist with her late husband and has been isolated since his death. After their first stop (a hilarious scene where they dress timid Loretta in a sequined jumpsuit and Alan arrives with a Fabio-esque head of hair to great fanfare), things immediately go wrong as they travel on, and Loretta is kidnapped. An evil narcissist named Abigail Fairfax (played amusingly by Daniel Radcliffe) wants Loretta to decode ancient hieroglyphs from the lost tribe in Loretta's new book (which was based on real-life work she did) and find the priceless treasure buried in a long-lost tomb. He flies her out to the island where he has found the tribe's lost village. Alan saw Loretta get kidnapped, but the police refuse to do anything until 24 hours have passed. Alan calls in an ex-military trainer he knows, played by Brad Pitt, to help rescue Loretta (who's wearing a tracker device), and the two follow her and her captor to the island. As you might have guessed, Alan is nothing like the capable, heroic man he portrays from the books. Finally, Beth also joins the search, so that they are all on the island, racing against time.

In case you couldn't tell by the description, this is a very silly story, though it pays tribute to adventure-romance novels. The characters are over-the-top, the story is twisty, and there is a lot of action. It is all a whole lot of fun, which was just what we wanted! We were laughing right from the beginning. The actors all do a great job of inhabiting their larger-than-life characters, and Loretta and Alan get plenty of serious, poignant moments, too, so it's not all just farce. The Lost City was filled with laugh-out-loud humor, plenty of action and suspense, and--of course--some romance, too. It was the perfect entertaining choice for a sick day!

The Lost City is currently available on Amazon Prime and Paramount+ for free, and all the usual places where you can buy videos on demand.

Sunday, September 04, 2022

Weekly Inspiration: Having Fun Improves Health

I recently came across a TED Talk that really resonated with me, Why Having Fun Is the Secret to a Healthier Life by Catherine Price. You can watch it at the link or I will also include it here:

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This talk struck me because I really struggle with having fun! I know that sounds like a crazy thing to say, but it's true. One of my goals is to do two fun things each week (TV doesn't count) and two quiet things just for myself each week. And, yes, I am aware of the irony that I set goals to have fun!

I think that two things get in my way. First, I tend to get too focused on being productive and getting things done. Since my time/energy is so limited each day, just doing the maintenance stuff around the house and the work (writing, blogging, videos, etc.) I want to do uses up all of that limited energy. That's why I set the goals - to remind myself that fun also needs to be built into my weekly plans.

The other problem is, of course, that SO many things I would find fun are just not available to me anymore with chronic illness. Before I got sick, I was very active and loved outdoor activities. I think if I hadn't gotten sick, I would have started playing adult soccer (my sons loved soccer, so we all got interested in it) or maybe joined my friend in her new pickleball passion. I know I would be hiking every week, taking longer hikes with my husband and my friends, kayaking more often, and maybe even still backpacking--all things I used to love. Play just seems easier when you can do sports and activities. Even sitting up to play a board game (especially in the evening) is sometimes too much for me.

So, what can I do to have fun? It shouldn't surprise you that I have a tab in my Goals spreadsheet called Fun Things! Here's some of what I wrote there:

With Friends:

  • Talk on phone
  • Meet for a meal out 
  • Walk or hike
  • Kayak
  • Book group
  • Play games
  • Watch a movie in theater or at home

 With My Husband: 

All the same stuff as with friends, plus:

  • Jigsaw puzzle
  • Play cards or games (though he claims to hate games!)
  • Meet with friends
  • Have friends over
  • Go camping
  • Travel

On My Own:

  • Read (other than nap or bedtime, when I read every day)
  • Play a game
  • Watch TV or a movie (other than our usual time from 7:30 -9:30)
  • Coloring
  • Watch videos
  • Read magazines
  • Walk or hike

I know that I desperately need more time with friends. My health has been very up and down the past few years (and is currently pretty bad), which makes it almost impossible to plan anything. I haven't seen my closest friends in months, though I did finally spend some time talking on the phone to one friend this week, which was wonderful. My book group will be starting up again this month, so I'm looking forward to that, although I had to cancel roughly ever other time last season. 

This video has inspired me to try to add more fun to my life!

How do YOU have fun, within your restricted life?

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Saturday, August 27, 2022

Sick Lessons Podcast Interviews Me

At the beginning of the summer, I wrote here about a brand-new chronic illness podcast, Sick Lessons, hosted by my online friend, Sheryl Chan, of the A Chronic Voice blog.

Sheryl's latest episode features an interview with. ... me! We talked about living with chronic illness, my family's journey the past 20 years, lessons I have learned, how to cope, and much more. Best of all, we had a lot of fun, and that comes across in the video, as there is a lot of laughing! Sheryl and I have interacted with each other online for many years, on social media, as chronic illness bloggers, and as fans of each other's blogs, and as you'll see in the video, we had a blast finally getting to chat "in person." And this was no small feat, since we live on opposite sides of the world and are exactly 12 hours apart.

You can watch/listen to the episode on the Sick Lessons website, on YouTube, or I will include the video here in this post. If you prefer to read, Sheryl has provided a full transcript, both on her website and on YouTube (at the above links).

I hope you enjoy watching/listening to the interview as much as I enjoyed talking with Sheryl. In fact, one of the things we talk about in this episode is how powerful and encouraging it is to connect with someone else living with chronic illness.

Tell me about YOUR experiences with chronic illness. 

Could you relate to the things Sheryl and I talk about here? 

What lessons have you learned from your life with chronic illness?

Wednesday, August 24, 2022

Chronic Illness Vlog: Hectic Week!

I posted another Chronic Illness Vlog on my YouTube channel. This one was recorded last week, and it covers a much too busy week that ended with family staying with us, so you can see how exhausted I was by the end of it!

You can watch the video on YouTube and I will include the video below, too:

This video provides a glimpse into my daily life, the routines that help me, and the ups and downs of living with chronic illness.

Let me know what you think!

Do you like the vlog format?

How was YOUR week?

Sunday, August 21, 2022

Weekly Inspiration: Non-Stop Thoughts and Peace

It has been a LONG time since I've written a new Weekly Inspiration post! Sorry about that. It used to be my Sunday morning routine, and somehow, I can't seem to find the time now. Which is what today's post is about.

I was struck by a quote from a book I enjoyed this spring, How to Live Safely in a Science Fictional Universe by Charles Yu. As you can probably tell by the title, it was a unique, quirky sort of novel, but it was about time travel, which I love to read about. The main character, also named Charles Yu, is traveling through time and space as he works as a time machine repair man, helping time travelers who've gotten stuck or used their machines improperly. But Charles has a greater mission: to find his father, who helped to invent time travel and then disappeared. You can read more about the novel in my review on my book blog.

In this scene, Charles is in a Buddhist temple, experiencing the silence and emptiness and peace of it, after his frantic years of rushing around the universe.

"My thoughts, normally bunched together, wrapped in gauze, insistent, urgent, impatient, one moment to the next, living in what I now realize is, in essence, a constant state of emergency (as if my evolutionary instincts of fight or flight have gone haywire, leading me to spend every morning, noon, and evening in a low-grade but absolutely never-ceasing form of panic), those rushed and ragged thoughts are now falling away, one by one, revealing themselves for what they are: the same thought over and over again. And once revealed for what they are, these hollow thoughts, imposters, non-thoughts masquerading as thoughts, memes, viruses, signals fired off, white noise generated by my brain, they are gone."

            - Excerpt from How to Live Safely in a Science Fictional Universe by Charles Yu

This passage struck me--and I added it to my Quotes Journal--because it describes exactly how my own thoughts feel most of the time!  I think it is a common state in our modern world, with too much input constantly assaulting our brains. In my case, it is that but also that I know I am trying to do too much. Somehow, my goals and to-do list just keep growing, and I am barely keeping up with maintenance tasks--not only my blogs and videos but also maintaining our house and yard and caring for myself. Which means I have little time left over for the things I really want to do, like spend time with friends, work on some new writing projects, or just relax and have fun. Despite being chronically ill and spending a lot of time every day resting, my life still feels like Yu describes above. My brain is constantly running like ... well, exactly like he says in that passage!

The character in the novel found peace and vanquished that constant urgency in the Buddhist temple. For me, that kind of peace often comes only when I am outdoors. I've noticed that when we are camping, and I am "off-grid," it still takes me a little time to calm down that barrage of thoughts. But when I finally do, it's a wonderful sense of peace and tranquility, to stop worrying about everything and constantly planning and calculating what to do. It's such a relief to just be, to sit and stare at the campfire or read a book in the middle of the day!

My happy place: Our favorite campsite

I don't need to go away to experience that peace. Sometimes, I can feel that way at home, but it takes a purposeful effort. Occasionally--not often enough--my husband and I will declare a day off or even a brief "respite," when we both pledge to set everything aside and just relax. We'll order takeout on a Saturday night, watch a movie, and then I am able to let go, too. 

I enjoyed a nice day off on my birthday last month. It was horrendously hot outside, so we went to a morning matinee at the movie theater. We hadn't been in over a year, but at 10 am on a Saturday, the theater was almost empty! We watched Where the Crawdads Sing, which is based on a novel I loved, and we just completely escaped into the beautiful world of the film. After my nap that day, I had an amazing surprise: my childhood best friend came to visit, the first time we'd seen each other in over ten years! It was a full, fun day with none of the usual pressures or "white noise generated by my brain."

Do you relate to this quote at all?

Do you have trouble turning off your brain and truly relaxing?

What brings you peace?

Wednesday, August 17, 2022

Chronic Illness Vlog - A Week in My Life

Now that life is settling back into "normal" for us after July's craziness, I was able to put together another vlog. A vlog is a series of live-filmed video clips (versus a video where I sit and talk about a planned topic). This one covers one week of my life (last week), showing an honest picture of what my week was like.

For me, thanks to many treatments for ME/CFS, Lyme disease, and Orthostatic Intolerance, that means a week of alternating mild activity and periods of rest/recovery. In this vlog, you also see glimpses of my daily routine, including meals and meds/supplements. Our weather finally cooled down a bit, so there are also plenty of nature video clips here!

As usual, you can watch the video on YouTube at this link or I will include the video here:

I would love to hear your thoughts on this kind of vlog-format video! 

Do you enjoy these? Do you find them useful or informative?

Please let me know what YOU would like to see here on the blog and in my videos!

Thursday, August 11, 2022

Interview on ME/CFS, OI, and long-COVID on Podcast

A couple of weeks ago, I had the great pleasure of being interviewed by Dr. Tony of the Crooked Spine podcast. He was fascinated by my family's story and asked me all about ME/CFS (myalgic encephalomyelitis, chronic fatigue syndrome), orthostatic intolerance (including POTS), and Lyme disease and other tick infections. We also talked about the challenges of living with any kind of chronic illness and ways to cope.

The video is now available on YouTube. You can watch it here on my channel at the link. And I will also imbed the video below so you can watch it right here, if you prefer:

This was a great opportunity to help get the word out about ME/CFS and long-COVID, as well as the OI that accompanies it and the additional challenge of tick infections.

I hope you enjoy it. You can leave comments on YouTube below the video or here on the blog. 

Let me know what you think and if you have any questions.

Tuesday, August 09, 2022

TV Tuesday: The Bear

One of our favorite TV shows this summer has been The Bear, a unique, engrossing show about a professional chef trying to save his family's dive restaurant.

Carmen Berzatto (Carmy or Bear to his friends and family) is played by Jeremy Allen White, a wonderful actor best known for his long-running role as Lip on Shameless. Carmy has come home to Chicago after his brother Michael's death by suicide. Michael left the family's grimy beef sandwich restaurant to Carmy, who trained as a professional chef at the Culinary Institute of America and has worked in what's considered the best restaurant in the nation. Carmy was even recognized as one of the top young chefs in the country. His family's run-down sandwich shop is a big step down for him and is failing financially. Filled with grief, Carmy is determined to turn things around and make it a success. Most of the employees have worked for Michael for years and are devoted to the restaurant but have no professional training. Tina, played by Liza Colon-Zayas, is a smart-alecky woman who doesn't like being told what to do by this new guy intent on changing things. In contrast, Marcus, played by Lionel Boyce, who normally just bakes the rolls for the sandwich shop, is excited to have his role expanded and has dreams of baking some of the magnificent desserts he's seen in books and magazines. Richie, played by Ebon Moss-Bachrach, is an obnoxious, loudmouth who is always yelling, but he grew up with Michael and Carmy and is a part of the business. Carmy brings in one new person, Sydney, played by Ayo Edebiri, an ambitious young sous chef who has big ideas and is willing to work in this dive restaurant just for the honor of working under the great Carmine Berzatto. In just eight episodes, this ragtag crew argues and fights to try to keep the restaurant afloat, with plenty of conflict between Carmy's professional chef methods and the way things have always been done. Carmy almost destroys himself with his long hours, grief, and the stress of trying to save the restaurant. Somehow, things begin to come together and improve, but this determined group encounters one challenge after another, from overflowing toilets to kitchen fires to a rowdy bachelor party.

I've been trying to figure out what makes this show so special and engaging. Certainly, part of the equation is Jeremy Allen White, but the other cast members are just as important (and talented). It's an ensemble show with a lot of emotional depth about trying to achieve what seems an insurmountable goal against horrible odds. We were rooting for these flawed people every step of the way (even Richie once we better understood him). There is suspense in whether or not they can keep the restaurant going and whether they can improve it without going bankrupt, and there are plenty of surprises and secrets left behind by Michael (mostly bad ones). It's an underdog story with a lot of heart, and we loved every moment of it. We hope there will be a second season!

The Bear, an eight episode season, aired on FX and is also available on Hulu. Just watching the trailer gives me chills and makes me want to watch the show all over again!

Monday, August 08, 2022

Chronic Illness Vlog - July

Hi, all! Life has been hectic recently, but I wanted to let you know that I tried something new for my YouTube channel. I was inspired by Pippa Stacey of the Life of Pippa channel, who always makes wonderful live vlog videos. She has chronic illnesses and creates these fun, honest vlogs, with video clips from her real life. I always enjoy her videos, so I decided to try it myself!

My first attempt is my Chronic Illness Vlog - July. It was meant to cover one week, like most of Pippa's do, but, well ... life got complicated, as you will see! This vlog includes short video clips of my real life, including good days, bad days, and everything in between. You can watch it here or click the link to watch on YouTube:

I would love to hear what you think of this kind of vlog format. Most of my other chronic illness videos have been more informative types, focused on aspects of chronic illness or coping tips.

So, check it out and let me know your thoughts! Would you like to see more vlogs? Are there other informative topics you'd like for me to cover on video? 

Leave a comment here or below the video on YouTube. You can also connect with me on Twitter or on this blog's Facebook page.

Monday, August 01, 2022

Movie Monday: The Power of the Dog

A couple of weeks ago, my husband and I decided to watch a movie on Saturday night. We've gotten so caught up in following all the great TV shows available on cable and streaming now that we rarely watch movies anymore. That means we are way behind on watching all the award nominees. We chose The Power of the Dog which had been nominated for a Best Picture Oscar in 2022, as well as eleven other Academy Awards! This gorgeous Western was not exactly what we expected, but it was an excellent movie.

Benedict Cumberbatch plays Phil Burbank (and was nominated for a lead actor Oscar for his role), a hard but charismatic rancher in 1925 Montana. He and his brother own the ranch left to them by their father, but it's clear that George, played by Jesse Plemons, is more the businessman, and Phil is the hardcore rancher. He inspires awe and fear in those around him. While on a cattle drive, Phil and George and their men stay at a boarding house/restaurant run by the widowed Rose Gordon (played by Kirsten Dunst, also nominated), who lives there with her teen son, Peter (played by Kodi Smit-McPhee). George falls for Rose, and they are soon married. Rose drops Peter off at school, where he will study to become a surgeon, and then heads off with George on a multi-day trek across a bare but beautiful landscape to the isolated ranch. There, George and Rose are happy at first, but Phil seems determined to torture Rose. George is often away on business for a week or two at a time, and during those times especially, Phil is relentless in making Rose feel like an unwelcome intruder, driving her to turn to alcohol. When Peter visits during his summer break, he can immediately see the frail emotional state his mother is in and that she's been drinking. In an unexpected move, though, Phil stops mocking the boy for being effeminate and instead takes him under his wing, teaching him to ride and rope. With all the different tensions just below the surface, it's unclear what will happen next.

There are plenty of secrets lurking behind the characters here, and some plot twists that took us by surprise. The growing tension on the ranch creates plenty of suspense. It just feels like something will eventually have to give in this unequal battle of wills. The stunning landscape and gorgeous cinematography add a lot to this film (it was also Oscar-nominated for Best Cinematography, and it's clear why). It's easy to get lulled by the atmosphere and harsh beauty of the ranch so that you don't see the surprises coming. This is a dark movie with a lot of emotional complexity. It was different than what either of us expected, but it was very good, and it's obvious why it got so many award nominations.

Have you seen any of this year's Best Picture nominees yet? This was only our second!

The Power of the Dog is currently available on Netflix.

Monday, July 25, 2022

Movie Monday: Where the Crawdads Sing

I had the honor of reading Where the Crawdads Sing by Delia Owens before the book was released, writing a review, and also interviewing the author for Shelf Awareness (both interview and review at the link). I fell in love with the main character, Kya, and the gorgeous natural setting in the North Carolina marshes, so I was excited to see the story brought to life on the big screen. On my birthday Saturday, my husband and I treated ourselves to a morning matinee (no crowds!), our first time back in the theater in over a year. And, this wonderful adaptation did not disappoint.

As the movie opens, a young man named Chase, played by Harris Dickinson, has been found dead at the bottom of a metal observation tower in the North Carolina coastal marshes. The local police's investigation points to murder, and they quickly zero in on one suspect, a local woman named Kya (played by Daisy Edgar-Jones), who they immediately arrest. Kya lives a solitary life out in the marshes by herself. She is generally shunned by the townspeople, who call her "marsh girl," and treated badly, so when arrested, Kya doesn't speak to the police or try to defend herself. A retired lawyer in town, played by David Straithairn, is sympathetic to Kya and offers his help. Kya finally opens up to him and begins to tell him her story. When Kya was six years old, her mother abruptly left Kya and her siblings with their abusive father, having been beaten for the last time. As soon as they are old enough, her older siblings leave the homestead in the marsh, until Kya is left alone with her alcoholic father. Finally, he takes off, too, leaving Kya alone at just ten years old. She does her best to survive on her own, living off the land and earning some money by digging up mussels to sell to the local general store/bait shop, owned by Jumpin', played by Sterling Macer, Jr., and his wife, Mabel, played by Michael Hyatt, who are the only people in town who treat Kya kindly and recognize the peril of her situation. Kya makes a friend in Tate, played by Taylor John Smith, a boy who was friends with her brother and who also lives in the marshes. Eventually, as a young woman, she meets Chase. The action moves back and forth between flashbacks to Kya's early life and the present-day court case where she's being tried for murder. 

Like the novel, this movie is a murder mystery, courtroom drama, family drama, coming-of-age story, and love story, all set against the beautiful backdrop of coastal North Carolina. Nature plays a huge role in the overall story and especially in Kya's life, as for a long time, her only companions are the birds, insects, and other critters who live in the marshes and swamps. She collects all kinds of specimens, from shells to feathers and is quite talented at drawing everything she sees around her (her mother was a painter). Kya's coming-of-age story is beautiful and innocent, especially when contrasted with her present-day trial for murder. There is plenty of suspense right from the opening scenes about how Chase died and whether Kya did kill him, as the trial continues. 

We thought the casting was excellent, including not only Edgar-Jones but all supporting roles, too. I was glad we were able to see this movie on the big screen (recliner theater!), as the cinematography of the natural setting is absolutely stunning, with gorgeous views of the coastal marshes. The film also recreates a typical southern small town in the 1950's in a convincing way, though there's been some criticism that the Jumpin' and Mabel characters are racially stereotyped (the "kindly Black folk"). To my mind, they could relate to the way that Kya was being ostracized, in a way that the white residents didn't. I thought the movie stayed pretty close to the story in the book, though I read the novel back in 2018 (I think that's the best way to watch an adaptation, after a little time has passed). My husband has never read the book, but we both enjoyed the movie very much.

[Please note that I am well aware of the controversy now surrounding Owens, but since she herself was not under suspicion and the accusations against her family were never resolved, I chose to watch and enjoy the film on its own merits.]

Where the Crawdads Sing is currently showing in theaters and was released on July 15. The movie will eventually come to Netflix but not for about five months.

Friday, July 22, 2022

News from Our House: ME/CFS, GI Problems, and Diet

Did you miss me? For once, it wasn't my ME/CFS or Lyme that kept me from posting on my blog or making new videos!

We had to take an unexpected cross-country trip. My father-in-law passed away at 97 years old the first week of July. He had severe dementia and had lived a long life, so it was time. He wanted to be buried next to his wife, where he'd lived most of his life, in Oklahoma. So, my husband and I headed out on a long road trip. There was no way I was going to fly on a packed airplane with no one wearing masks and delays and cancellations rampant!

We drove four days to get there, staying in hotels along the way because it was much too hot to bring our camper (105 in Oklahoma!). The funeral service was lovely, with friends and family coming from near and far and lots of personal stories and memories. And then, we drove (well, my husband drove) another four days back. Other than some back pain from sitting in one position for too long, I do well on long car rides--it keeps me off my feet and forces me to do nothing! But we were both very glad to get back to our own bed and the couch and recliners!

No time for sightseeing but we passed by the Gateway Arch!


ME/CFS, GI Problems, and Dietary Changes 

Since my ME/CFS first started in 2002, GI problems had not been a big issue for me. The mild digestive symptoms I did have were completely eradicated when I discovered I'd become intolerant to dairy and began avoiding it. A full 30% of those with ME/CFS are dairy intolerant, according to one study, so definitely test that out if you have any GI symptoms.

But in September 2021, for no discernible reason, I suddenly developed chronic diarrhea. With the help of both my Lyme specialist and a functional medicine specialist, things have improved in recent months, mostly thanks to loads of probiotics--very specific ones, based on stool testing to show what I had too much of and not enough of (note that the testing did not show any pathogens). But I am still reliant on very high dose probiotics and still don't have an answer as to why these problems suddenly began last fall.

Food Sensitivity Testing

Before we left, at the end of June, I received the results of Food Sensitivity Testing (from Alletess). This is IgG testing, measuring the immune response to various foods. My Lyme specialist recommended it, and I didn't expect to learn anything surprising. After all, I already knew I was intolerant to dairy, and nothing else seemed to upset my stomach.

So, what a surprise it was to look at my results and see more than a dozen food ingredients show up as mild to moderate sensitivity, including:


  • Cashews
  • Pistachios
  • Sesame


  • Macadamia nuts
  • Poppy seeds
  • Grapes
  • Pineapple
  • Watermelon
  • Black-eyed peas
  • Chickpeas
  • Green peas
  • Peanut
  • Soybean
  • Casein
  • Whey
  • Cow's Milk (no surprise)
  • Egg white
  • Oregano 
  • Peppermint
  • Rosemary

There are a few others, but these are the main ones that I eat most often. I was eating eggs every day, drinking peppermint tea every evening, and even taking capsules of oregano and rosemary every single day ... for years! We often cook Asian-style meals with plenty of soy sauce and sesame oil. I used whey powder in my daily smoothies for lunch. And guess which nuts I most often eat, as part of my mostly-Paleo diet? Yup, cashews, pistachios, macadamias, and peanuts (not a nut, I know). In fact, since I knew I couldn't have dairy, I was eating dairy substitutes like cashew milk, cashew sour cream, and cashew feta cheese (all excellent, by the way), plus eating plain cashews and cashew butter daily!

I discussed the results with my Lyme specialist while in the car on the way to Oklahoma, and she explained some things. She said eating a food constantly (like eggs, peppermint, or cashews) could make me more sensitive to it. Also, since most of my test results showed only mild sensitivity, I could probably tolerate them once in a while, if I avoided them most of the time. She said the key was lots of variety and not eating the same thing every day ... which I had been doing!

Dietary Changes

So, I took her advice and eliminated everything on my sensitivity list from my regular diet, though I do splurge once in a while. I really love my smoothies and know the whey powder is a glutathione precurser, so I have a smoothie once a week (and am searching for a protein powder with no whey, peas, chickpeas, or soy - probably won't find one!). 

sigh ... no more daily Paleo smoothies!

I avoid eggs all week and use only the yolks if we have hard-boiled eggs in a salad, but I have eggs on the weekends when my husband and I have breakfast together. I struggled with how to have a high-protein breakfast with no eggs, but I am finding some combinations that work, like oatmeal made with chia seeds and walnuts or high-protein, high-fiber cereal with pecans and chia seeds (both with plenty of fresh fruit on top and almond or oat milk). I even tried a vegan egg substitute, Just Egg, that was OK. I may have that once a week as a scramble with veggies. 

Much as I hate restricting my diet so much, I did have a pretty good week GI-wise, with few problems (except for today when I ate the whey powder!). And, on the plus side, most of my sensitivities are mild, and nothing at all showed up under meats & poultry, grains & starches, beverages, or vegetables (and very little under fruits and herbs/spices).

Luckily, I can still eat all veggies!

I definitely recommend this kind of food sensitivity testing because I was completely unaware of most of these (and it was inexpensive, about $150).

For my son, discovering--through testing--that he was severely gluten-intolerant was a huge factor in his recent improvements, allowing him to work full-time now! It's really been amazing what a difference eliminating gluten made for him, in all aspects of his illnesses. He was quite resistant to the idea before, since many of his favorite foods have gluten, but now that he's seen the results, he's strictly gluten-free by choice.


Relapses and Recoveries

Just a reminder that my last update covered a list of treatments that helped me recover from multiple relapses, including a post-COVID relapse, and a list of lessons learned that are applicable to anyone with ME/CFS or long-COVID.

I also did a video update before my trip, an update on my relapse recovery, long-COVID recovery, and how I track my illness.

What We're Watching and Reading

Summer for me means Big Book Summer! This is a fun, low-key reading challenge I host every year, and this is its 10th anniversary! A Big Book is just any book with 400 or more pages, and any kind of book counts: middle-grade, audio, graphic novel, etc. And it's low-key because you set your own goals, whether that's reading one Big Book between May and September or two or setting aside a stack like I do, to choose from all summer long. It's still only July, so there's plenty of time left to sign up--all the details are at the link above.

Here's my June reading wrap-up, of the four Big Books (two in print and two on audio) I finished last month - all were very good!

My husband and I haven't been watching many movies lately, but as usual, we are enjoying a bunch of TV shows, even while on the road (the advantage of hotels over camping--WiFi!).

The Flight Attendant, based on the novel by Chris Bohjalian, on HBO is a fun, darkly humorous thriller starring Kaley Cuoco as a flight attendant whose life is a total mess. She's a party girl who drinks too much, and one night in Bangkok, she sleeps with a guy she really likes, who is dead in a bed filled with blood when she wakes up beside him the next morning! What follows is a fast-paced, deadly race to find the killer and save herself. Read my full review and watch the wonderful trailer at the link.

The other thriller (slightly less frantic) that we are enjoying is The Old Man, starring Jeff Bridges and John Lithgow. Bridges plays a former CIA agent who has been hiding out, living a quiet life for decades, when suddenly someone finds him and tries to kill him. He's prepared for this, but wasn't expecting it right now, so he goes on the run, reluctant to break ties with his adult daughter, though he knows that's how to keep her safe. This is a very twisty story, filled with old secrets, past histories, and plenty of action and suspense.

How about you? How are you doing this summer? 
And what have you been reading and watching? I'm always looking for recommendations!

Tuesday, June 28, 2022

TV Tuesday: The Old Man

Usually, my husband and I juggle a bunch of shows on both cable On Demand and streaming, so I was disappointed that there didn't seem to be many new or returning cable shows this summer. Then, we heard about The Old Man on FX (and on Hulu), about a retired CIA agent who suddenly has to go on the run again. Wow, we are loving this show so far!

Jeff Bridges stars as Dan Chase (his current name), the "old man" of the title and the retired agent. As the first episode opens, his quiet life in a remote cabin with his two dogs is shattered when a gunman visits his house one night. He tells the local police it must have been an armed robber, but when they see the intruder had a silencer on his gun, they wonder. Dan immediately grabs his go bag--he was obviously prepared for just such an incident--and hits the road. On the way, he calls his adult daughter to let her know she may not hear from him for awhile. He also talks to Harold Harper, played by John Lithgow. Harold is also retired, as a Director of the FBI, and it's clear the two know each other and have a long history. Harold warns Dan that an old nemesis is after him, with both the FBI and CIA involved. Harold ominously advises Dan to run so that old secrets will remain buried, but Dan doesn't want to break all ties with his daughter, as Harold suggests. After a stunning encounter with the agents pursuing him, Dan holes up in a rental house he knows about, not realizing there is now a divorced woman on site, Zoe (played by Amy Brenneman). He is trying to rest and heal before he heads west, but she is a complication he hadn't counted on. Meanwhile, the efforts to find him escalate within the FBI and CIA.

We have watched three episodes of this seven-episode season so far (since it is currently airing, that's all that's available so far; episode four will be released this Thursday), and we are totally hooked! Bridges and Lithgow are both outstanding in their roles, as is the supporting cast. Bridges in particular plays the role of the mysterious Dan with such emotional depth that you get pulled into his story. Some scenes flash back to when Dan was a younger man in the CIA, so the viewer slowly learns what happened in the past and why the agencies are so intent on finding him now. But Dan is a formidable opponent, even entirely on his own. Secrets (some shocking) are slowly revealed, and even when you aren't entirely sure what bad stuff Dan did in the past, you're still rooting for him! We are absolutely loving this action-packed and suspenseful yet warm and moving show and can't wait to see what happens next.

The Old Man is currently airing on Thursday nights on FX, with episodes available both On Demand and on Hulu.

Thursday, June 23, 2022

News From Our House: Chronic Illness Update

I realized this week that it's been two months since I recorded a video related to chronic illness (I've done lots of books videos in between because they are usually short and take less energy!), so I decided to record a little update of my past few months. 

This is just a casual conversation about the ups and downs of my illness recently, but it also includes some information about how I came out of my post-COVID relapse and how I track my symptoms/illness severity:

Oh, and I included some photos and video clips of fun stuff, too, including some very peaceful nature videos!

You can see all of my chronic illness videos on my YouTube channel.

In this new video, I refer back to a recent blog post, ME/CFS, Lyme & COVID: Relapses and Recoveries for details of what helped me recover from my various relapses.

I've already had two crash days this week (unusual for me) and am trying to take it easy today, so that's it for now. Please let me know if you have any questions.

How is YOUR chronic illness life lately?