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?

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?

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?

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!

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.

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!

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.

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.