Tuesday, November 29, 2022

Giving Tuesday 2022 - Help ME/CFS and long-COVID Patients

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday & Cyber Monday. Every little bit counts, even if it's only $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did several years ago with OMF (see below) so that $5 is automatically donated from me each month - I don't have to think about it or do anything else, and my donation adds up to $60 a year! It only takes a few minutes to either donate or set up recurring donations.

And there are some amazing deals in place right now that will double or even triple your donation, turning $10 into $20 or $30! Any donations to groups that do ME/CFS research and/or support ME/CFS patients will also help those with long-COVID.

Where to Donate:

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy--all are doing wonderful work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

Host Your Own Fundraiser:

To have an even bigger impact on these organizations, you can host a Fundraiser on Facebook. For Giving Tuesday, Facebook has pledged to match up to $7 million dollars in donations! I have hosted fundraisers on Facebook for my birthday, and it's very simple to set up. Just go to the Facebook Fundraisers page and click on "Select Nonprofit" (all of the ones listed above are available), then follow the steps. You set your own fundraising goals, share your fundraiser with Facebook friends, and then Facebook will double whatever donations you bring in! More info on how it works and the matching gift today here.

Donate While Shopping:
And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop!  

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. You can also earn by using the site 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.

Amazon is not a part of either program listed above but has its own charitable donation program: AmazonSmile. Just sign up and choose your charity (most of those listed above are options). My quarterly report from AmazonSmile from September 2021 says they sent a payment of $1338 to Solve ME/CFS for the quarter and that to date, the organization has received $22,792 from AmazonSmile! I added more to that yesterday. These shopping links really pay off, with almost no effort and no cost to you.

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients!

Tuesday, November 22, 2022

Chronic Illness Vlog 11/21/22 - Trying Treatment Changes

Not much time this week. We're rushing to get ready for a trip to my hometown (Rochester, NY) for Thanksgiving. I'm not in great shape, but I'm not in awful shape, either. I made a change today that I hope will help me get through the long holiday weekend!

And that's a lot of what last week's Chronic Illness Vlog is about - making changes in my treatments. Happily, the result, as you'll see here, is that I am finally feeling better and able to do more. You can watch the latest vlog on Youtube or below:

I'm a bit anxious about the trip and how I've been feeling, but I'll feel better once we are out the door and on the road tomorrow (about a 7-hour drive). I'm already very happy to have our older son home with us and looking forward to spending several days with all of us together. I'm also looking forward to seeing some extended family, though I'm nervous about COVID, and social gatherings exhaust me.

Hope that all my U.S. readers enjoy a wonderful Thanksgiving!

And please tell me about YOUR week in the comments!

Friday, November 18, 2022

New Diagnostic Codes for ME/CFS and Long-COVID Now Active!

I thought I already wrote about this exciting advance for patients of ME/CFS and long-COVID, but I can't find it among my blog posts. Well, it's been a rough few months--it's entirely possible I never got to it! So, here's the big news:

Effective October 1, updates to the ICD-10-CM, the U.S. version of the International Classification of Diseases, will include ME/CFS--using both terms, myalgic encephalomyelitis and chronic fatigue syndrome--and also long-COVID.

ICD codes are the diagnostic codes that doctors must use each time they consult with a patient--insurance companies require them. In the past, doctors had to fit us ME/CFS patients in wherever they could. Often that meant using "chronic fatigue--unspecified," which of course was not accurate. Old ICD codes also referred to myalgic encephalomyelitis as "benign'!

These diagnostic codes that doctors assign are recorded and tabulated, and knowing how many patients suffer from a particular disease can affect funding, allocation of resources, and attention from the NIH and other bodies. No wonder ME/CFS has never gotten any significant government funding.

You can read a summary of the new codes and the changes made here (put together by #MEAction).

I printed a copy of that summary and gave it to each of my doctors, asking them to share with all their staff and to use the new code (G93.32) for my son and I and any other ME/CFS patients and pointing out the new long-COVID codes (either G93.3 or U09.9).

This is an important and exciting step forward for all ME/CFS and long-COVID patients. Many of us have waited decades for this!

So help to spread the word!

Tuesday, November 15, 2022

TV Tuesday: So Help Me Todd

I included trailers for several new TV shows we wanted to try in my Fall 2022 TV Preview post, and one of our favorites from that group is So Help Me Todd. We are really enjoying this crime drama that mixes in family and a great sense of humor.

Marcia Gay Harden plays Margaret, a successful lawyer at a top law firm in Portland, OR. She is always dressed beautifully and perfectly poised. Her son, Todd (played by Skylar Astin), is her opposite, living life from the seat of his pants and the black sheep of their very accomplished family. Todd lost his private investigator license for some illegal activities and has been a bit lost in the two years since. His mother is constantly harping on him to grow up and live more like an adult, but this time, she might actually have a good idea. After Todd helps her, both with a legal case she's representing and a personal matter, she hires him as an investigator for her firm, though the firm's existing investigator, Lyle (played by Tristan J. Winger), never lets Todd forget he's the top dog. In between solving cases for his mother--and gradually earning her respect--Todd is also spending more time with his family, including his sister, Allison (played by Madeline Wise), her husband, his brother-in-law, Chet (played by Thomas Cadrot), and his niece, Clem. As Todd becomes closer to his family, he solves case after case and becomes an asset to Margaret and her firm. And maybe Margaret even learns to loosen up a bit (maybe).

This show has all the ingredients we love in a TV series: mystery, suspense, family drama, and a wonderful sense of humor. The two lead actors--Harden and Astin--are outstanding in their roles, and the supporting actors are all excellent as well. Each episode deals with a different legal case that Todd helps to investigate, usually with a twisty plot and plenty of surprises. The relationship--and the banter--between Todd and Margaret is fun and amusing, but there is also a sense of warmth as the two of them and the rest of the family grow closer to each other. We've watched seven episodes so far (#8 comes back in December), and we look forward to it every week. No word yet on whether this wonderful show will come back for a second season, so be sure to check it out soon so the decision-makers know that people are enjoying it!

So Help Me Todd airs on CBS Thursday nights. We watch it On Demand, and it is also available through Paramount+, Hulu, CBS TVE, Pluto TV, and other popular streaming outlets.

Friday, November 11, 2022

Outdoor Nature Vlog & Good News!

The good news is that I finally seem to have come out of this months-long relapse that has trapped me on the couch since August! I made one medication change three weeks ago and two more last week, and I felt really good most of this week. I am pretty much back to my normal baseline, though my stamina is low after not doing anything for months. But I took my first walk in over 3 months this week, with no crash afterward! It's been a complicated situation, so I will write a longer blog post next week, explaining what helped me.

Best of all, we finally got our camper back from the repair shop (it had been hit in a traffic accident), just in time to take advantage of the last warm weather of the year. We went camping for two days to Trap Pond State Park in southern Delaware, and I was even able to manage kayaking. Trap Pond is the site of the northernmost-occurring natural grove of cypress trees, which are beautiful. The weather was great, and the natural beauty was stunning. We could see the lake/pond right from our camper.

So, this week, my usual vlog was a whole lot more fun! It's mostly video clips and photos of our camping trip and the gorgeous natural world around us. There's a little bit at the end about the books I'm reading, too. Studies show that just looking at pictures of nature improves both physical and mental health, so I hope you enjoy coming along on our trip! You can watch the video on YouTube or here below:

Tuesday, November 01, 2022

Chronic Illness Vlog 10-31-22 & Happy Halloween!

Last week's vlog shows an honest view of my life with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), Lyme disease, and Orthostatic Intolerance (OI).

I am still--slowly--working my way back from this months-long relapse, but I am definitely seeing improvements. I actually went OUT last week--three times!--and enjoyed a fun weekend. That's a big step forward.

I'm still on the couch today and still achy, but I'm much more functional than I was a few weeks ago, when I was unable to even sit up briefly.

As always, you can watch the video on YouTube or I'll imbed it below.

However you watch, please take a moment to leave a comment and let me know: 

How was YOUR week?

Thursday, October 27, 2022

ME/CFS and Long-COVID New Research Summary

It's been a long time since I wrote one of these research updates, but I've got about 20 open tabs in my browser with exciting studies on ME/CFS and long-COVID that I want to share with you! 

The research into myalgic encephalomyelitis and chronic fatigue syndrome has been encouraging for many years, as scientists figure out more and more pieces of the puzzle. However, the high incidence of long-COVID and its connection to ME/CFS has resulted in an enormous increase in both research interest and funding. Expect to see a whole lot more coming soon!

In the meantime, here are some quick overviews (with links to more details) of research into ME/CFS and long-COVID that I found interesting and encouraging:

Orthostatic Intolerance:

This article, Why the 10-Minute NASA Lean Test?, by Dr. Lucinda Bateman, one of the top ME/CFS clinicians in the world, describes a series of studies her clinic has done in the past few years on Orthostatic Intolerance (OI) in ME/CFS patients. Her summary (at the link) is easy to understand and fascinating. As previous studies had indicated, ME/CFS and long-COVID patients who definitely had OI did not always meet the official criteria during the standing/lean test. Her team pointed out, though, that even ignoring the numbers, it was clear these patients did have OI from their symptoms and reactions during the test. They also discovered a new measure (the ratio of pulse pressure to systolic blood pressure) that was more accurate in identifying OI in the ME/CFS and long-COVID patients.The differences between newer patients and those of us who've had it longer are interesting, too.

When I researched OI for the two articles I wrote for the ProHealth website on the topic, I came across a study showing that the standing test is still more accurate than a tilt table test (and far less expensive and easier to get done), but as I explain in the article, you may need do the standing test multiple times to get accurate results and your doctor should always take into account your symptoms while standing and not just the numbers. The original articles have been taken down (along with all articles on specific diseases), but you can read copies I made here: Part 1 - Diagnosing Orthostatic Intolerance in ME/CFS, and Part 2 - Treating Orthostatic Intolerance in ME/CFS. I know the links don't work in these articles, but they both still contain scientific references at the bottom that your doctor can look up for more information, so they're ideal to print and share with your medical team.


Identifying Genes in ME/CFS:

1. It has long been known that ME/CFS has both infectious and genetic roots, proven through several studies of families. More than a decade ago, I participated in a study to identify the exact genes involved in ME/CFS, but that study ended when it lost funding. Finally now, many different research organizations are digging back into that problem--with newer technology--and trying to identify the genes that make someone more susceptible to ME/CFS.

In his blog/newsletter, ME/CFS Research Review, Simon McGrath reports, New Study Links 14 Genes to ME/CFS. This study has not yet been published but has been submitted to a scientific journal and is being considered for publication. It used existing genetic data from the UK BioBank and analyzed it in a new way to identify 14 genes that seem to be linked to ME/CFS, paving the way for a possible way to identify patient sub-groups. 

Much of the article at that link is quite technical (far too much in the weeds for me!), but if you scroll down to the bottom, the heading What Do the 14 Genes Do and Can They Explain ME?, it's pretty interesting and easy to understand, highlighting areas of autoimmunity, energy metabolism, sleep, and infection. You might also be interested in the two sub-headings before that: Success with Other Illnesses and Issues with the UK Bio Bank Sample.

 2. Another genetic study of ME/CFS and long-COVID was just published. It is a systemic review of ALL genetic studies published to date on ME/CFS and long-COVID (that includes 23 ME/CFS studies and 71 long-COVID studies, which shows you how long-COVID is affecting the state of research!). You can read a summary (and further down the page, an abstract) of this study in the ME Association's weekly Research Round-Up, October 4-10 (there's also an audio option at the link if you prefer to listen). 

These kinds of review studies can be very helpful in pulling data together. This review found a range of common genes affecting both ME/CFS and long-COVID, including one involved in controlling blood pressure and two involved with immune function. The Research Round-up at that link also includes brief summaries of studies of long-COVID dealing with immune function, potential causes, MCAS, and a potential biomarker.

That's all I have the energy for writing about today--and probably all you have the energy to read, as well! I will try to get back to more frequent updates, both to stay up-to-date and to keep my browser from getting so cluttered!

If you are interested in current research of ME/CFS and long-COVID, I highly recommend checking out the ME Association's weekly Research Round-Up. I linked to the Oct. 4-10 summary up above, and you can see their October 11-17 summary, which includes 7 new studies on ME/CFS and 15 new studies on long-COVID.

I've also been doing some freelance writing, helping Open Medicine Foundation to write patient/layperson summaries of some of their new research projects. Wow, there is some really exciting research coming up! They'll be sharing those in November, and as soon as they're published, I'll share them here with you, too.

Tuesday, October 25, 2022

Interview on Chronic Illness and ME/CFS

Last week, I was interviewed by my local independent bookstore! They were very understanding about my limitations and the potential issues with me doing an in-person event in a crowded store, so they used me as a test case for a new process: prerecording an interview on a videoconferencing app and then sharing it on their Facebook page. It worked out very well! Though I am still very slowly working my way out of this months-long relapse, I was able to sit up long enough for a half-hour interview in my own dining room!

The interview covers living with chronic illness in general and my book, Finding a New Normal, but she also asked me quite a lot of questions about ME/CFS specifically. She had just recently interviewed Meghan O'Rourke, author of The Invisible Kingdom, who also has ME/CFS, so she knew a bit and was interested to learn more. I mentioned the connection with long-COVID as well. That provided a great opportunity to build awareness of our oft-misunderstood illness! We also chatted about the writing process and about books and reading.

You can watch the short interview on the bookstore's Facebook page (sorry, this isn't one I can imbed here).

Hope you enjoy the interview!

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.

Sunday, October 23, 2022

Weekly Inspiration: Living in the Moment

Chronic illness is filled with challenges, and it can be difficult--or even feel impossible--to be happy in the midst of a life ruled by limits and restrictions. But it is possible, and I wrote a whole book with ideas on how to improve your life with chronic illness, embrace small moments of joy, and find happiness within your limitations. I'm always interested in learning more, though!

I came across this TED talk called Want to Be Happier? Stay in the Moment by researcher Matt Killingsworth who studies happiness. It's a short 10-minute talk, but I found it very interesting and thought-provoking. Matt studied data from an app where people rate their happiness at different times of day and say what kind of activity they are doing and whether their mind is wandering. The results are fascinating. You can watch the talk below (or watch at the link):

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He talks a lot here about staying in the moment and the impacts when your mind wanders. This is something I definitely struggle with. In fact, while watching this video and trying to listen and enjoy it, I realized my mind kept wandering! I was thinking about what I'd write in this post, what I wanted to get done today, how bad my aches are today, and how to rearrange the shelf of cookbooks in my kitchen. And that was all in just 10 minutes!

On the other hand, as I was getting ready for bed last night, I realized I was feeling very happy, maybe even euphoric! I thought about our evening. Because of my months-long relapse, I haven't been able to go out much or see friends very often. Good friends invited us over for dinner last night a few days ago, but I didn't want to schedule something, have them plan, shop, and cook, and then have to cancel. So, I texted them yesterday morning and said, "Hey, I'm feeling OK today. Do you guys want to come over for takeout and a campfire?" They did, and we had a wonderful evening catching up with them, eating delicious Thai food, and enjoying a roaring fire on a beautiful fall evening. Several things made me happy last night: seeing friends and enjoying good conversation, good food from one of our favorite restaurants, and spending time outdoors, which always lifts my spirits. And all while I was reclined in my lounge chair at home! But now, after listening to this talk, I am realizing that I was also fully engaged in the moment last night, with little mind wandering. 

I think I need to focus more on this concept of mind wandering because even when my body is incapacitated and lying on the couch, my mind is constantly thinking about other things. Even when I'm watching TV, I'm usually checking e-mail or scrolling Twitter (a new bad habit, thanks to finally having a smart phone!), or glancing at the newspaper. (One thing I love about reading a book is that you can't do other stuff; you have to focus, which allows you to lose yourself in the story.) With chronic illness, we have the added challenges of constantly assessing our current condition: Do I need to eat? Is it time for meds? What caused this crash? Did I do too much yesterday? What will I be able to do tomorrow? Some of that is necessary, but I'd like to reduce all this mind wandering, especially when I'm doing something that should be enjoyable!

I want to try to focus more on not just living in the moment but recognizing and enjoying the moment, even if my happiness is from simple joys, like lying in the sunshine on our deck, looking at fall foliage, or reading a good book.

How about you?

Do you struggle with an overactive mind?

How do you help yourself to live in the moment?

Let me know in the comments below.

Friday, October 21, 2022

Chronic Illness Vlog & Lake Vacation

My ME/CFS is still in a relapse--10 weeks now. It's getting old. I am definitely better off than I was at my worst but still nowhere near my normal level of functioning. I still have flu-like aches every day, so I am still mostly couchbound, though I have been able to leave the house for short errands. I still can't tolerate even a short walk (with treatments for OI and immune dysfunction, I was able to walk for up to an hour without crashing!) or even sitting up for long. I'm typing this from a reclining lounge chair out on the deck to enjoy this nice fall day!

But I got a huge treat last week--a long weekend at a beautiful lake house in the Poconos in eastern Pennsylvania with my husband, our two adult sons, and their girlfriends. I've been planning this since last Christmas and was worried how I would handle it, but I managed OK. Even the couch in this house had great views of the lake! It was just what I'd hoped for--just some relaxed vacation time with our sons. The last family vacation we had together was in 2019. 

So, my latest vlog includes video clips from home last week, as I rested and tried to get ready for the trip, and then some videos and photos of "our" beautiful lake house last weekend. Studies show that just looking at pictures of nature has physical and mental health benefits, so enjoy!

You can watch the video on YouTube or I will imbed it here. 

Either way, leave a comment and tell me how YOUR life has been lately!

Tuesday, October 04, 2022

Two Chronic Illness Vlogs: Crashes and Improvements (and Crashes)

I'm now in week 8 of this severe relapse of my ME/CFS and still unsure what is going on behind the scenes with my immune system. It is very, very unusual for me to be this sick for this long. So, I am still unable to write much (or sit up much). But I have continued recording weekly vlogs. These are short video clips from each day (often lying down!), for an honest view of my life: the good, the bad, and the ugly. I have two here to catch up on:

Chronic Illness Vlog 9-25-22: Still Badly Crashed ... But an Outing!

Two weeks ago was a Very Bad Week. I was flat on my back on the couch (or in bed) every single day and wracked with severe flu-like aches constantly. I watched a lot of old Grey's Anatomy episodes. By the weekend, I was no better but was determined to get out of the house and out of my rut. You can watch the vlog on YouTube, or I will also include it below: 

Chronic Illness Vlog 10-2-22: Starting to See Improvements!

Last week was considerably better for me, though still nowhere near my normal functionality. But I was able to get out of the house at least briefly every day - what a thrill! I even got out for a special occasion on Friday. It was a pretty good week, compared to being couchbound for the previous three weeks. But then--you guessed it!--I did too much on Sunday (at the end of the video), so I have been back on the couch Monday and Tuesday of this week. Today was especially bad. You can watch the vlog on YouTube, or I will also include it below:


So, that brings you up to date! I am nearly flat as a type this brief post (and typing very badly). We have rebooked this week's camping trip three times already, due to bad weather, and plan to head out tomorrow afternoon for a couple of days at a local state park. Wish me luck!

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?

<div style="max-width:854px"><div style="position:relative;height:0;padding-bottom:56.25%"><iframe src="https://embed.ted.com/talks/lang/en/catherine_price_why_having_fun_is_the_secret_to_a_healthier_life" width="854" height="480" style="position:absolute;left:0;top:0;width:100%;height:100%" frameborder="0" scrolling="no" allowfullscreen></iframe></div></div>

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?