2022 in Review: My Worst Year in 20 Years of Chronic Illness

I know that title sounds like an exaggeration, but unfortunately, it isn't. When I recently looked back at 2022, I discovered that it was my worst year since I first got ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) in 2002 (and later, Lyme disease in 2007). I had two major relapses last year, one due to COVID and another due to long overdue (unfortunately necessary) medication changes. I have now crawled back up from those low points and have been feeling mostly well the past two weeks, so I'm ready to share what treatments helped ... just in time for a year-end review!

NOTE: I like data and am an analytical person. For details on how I simply track how I feel on a calendar, check out my post, My Progress in 2020 and Goals for 2021 and scroll down to My Health in 2020 and below that, the section called "How Do I Know This?" I use a 1 to 5 rating, where 1 is good and 5 is mostly bedridden. I also rate my exertion each day on a 1 to 5 scale. And for details on the process I use for goals, which focuses on taking small steps forward toward what I want in my life, see my recent video, Setting Goals When Chronically Ill (Improve Your Life in Tiny Steps).

 

2022 in Review

The data:

Average How I Felt = 2.9 (1 is good; 5 is bad)

• The lowest since 2004.
• 14% worse than in 2021. 
• 21% worse than 2019, my last good year, before all these relapses began.
  

Average % crashed = 26% (meaning I was couchbound/bedridden 26% of the time)

• Crashed = a 4 or 5 on my scale, unable to function.
  
• My lowest ever, in 20 years.
• Includes my worst month ever, September 2022 when I was crashed 77% of the time.
• 13% worse than in 2021.
• 21% worse than 2019.
  

Average exertion = 3.5 (on a scale of 1 to 5)

• 6% worse than 2021.
  
• 7% worse than my best year, in 2019, when I was able to do more than in any previous year since getting sick.
• Clearly, I was still doing too much last year as my condition worsened!

 

2022 Timeline: Highs and Lows

I've included some notes into January 2023 so you can see the end of the story and my recovery (hopefully) back to my own "normal."

January 5 - I caught COVID from my father-in-law's nursing home (so did he and my son).

January - I was severely ill, mostly bedridden/couchbound for three weeks and then the COVID symptoms began to clear up, but my ME/CFS remained worse than usual. Overall in January, my average for how I felt was 3.8 (out of 5, where 5 is bad), and I was severely crashed 65% of the time.

February - April - I gradually improved, bit by bit, with the help of treatment changes.

May - July - Mostly at my normal baseline, with how I felt = 2.4 and only crashed an average of 4% of the time.

August - With my OB/GYN retiring at the end of the year, and my age (57), she finally took me off the 90-day birth control pills I had taken for decades to hold my hormone levels steady (for ME/CFS). As we had planned, blood tests showed I was completely through menopause. We both anticipated that the transition off hormones might be rough, but it was much, much worse than either of us expected!

September - my worst month ever, badly crashed (nonfunctional and couchbound/bedridden) 77% of the time.

October - After two months off the birth control pills, I still had daily headaches, very low energy and stamina, and constant flu-like aches (an indication of immune system activation). The hormone shift had affected everything. My OB/GYN started me on low-dose estrogen patches, with a low dose of progesterone every 3 months for two weeks.

November - The headaches immediately cleared up, and my energy slowly returned. The aches hung on, so my ME/CFS specialist tried another dose of steroids for 5 days (which had helped me finally get back to normal in April).

December - Additional testing showed that the hormonal shifts had messed up all of my hormones (and the endocrine (aka hormone) system is closely tied to the immune and nervous systems). My ME/CFS specialist added a very low dose of testosterone and asked me to wait another month for things to stabilize before adjusting my thyroid meds.

January 2023 - With a family funeral to attend in early January (another rough start to the new year), I asked my primary care doctor to look over my latest labs and adjust my thyroid meds. Every single one of the 8 or so thyroid tests had come back low! She added a second thyroid medication. I managed the very long travel days to and from Texas and the funeral. The week that we came back (last week) was the best week I've had in six months!

LAST-MINUTE UPDATE: I've had trouble with the latest brand of estrogen patches my pharmacy sent me; they often fall off within 2-5 days (they're supposed to last 7 days), and I don't always notice right away. When I go without it, I crash badly. One fell off this week and I ran out of testosterone. I slept most of Tuesday and spent most of Wednesday in bed, badly crashed. With a new patch securely applied and back on testosterone, I am feeling better again, though I am still sleeping more than usual and have low energy the past two days. (My son has a cold, so this might also be my reaction to being exposed to a virus.)

What Helped Me

Post-COVID:

See my previous Relapses and Recoveries post for the treatment changes that helped me recover from the post-COVID relapse at the start of the year. There's a long list there of things that helped me.

Endocrine System/Hormones:

The endocrine system produces hormones that regulate everything in the body, including the immune system, the nervous system, heart rate, blood pressure, energy, temperature regulation--everything. When I stopped taking the combination of estrogen and progesterone I'd been on for decades, it threw everything off, not just the things regulated by those two hormones. It was a domino effect that sent me into my worst relapse ever.

So, my doctors helped me with estrogen, progesterone, and testosterone, based on my lab tests, but my thyroid function (which is normally a bit underactive) was also thrown off and needed to be tested and treated. 

Thyroid dysfunction is very common in ME/CFS (again, that domino effect - all systems in the body are connected and affect each other), but it's critical to get the right tests. To be thorough and look at all measures of thyroid function, ask your doctor to test:

• TSH
• Thyroxine (T4)
• T3 Uptake
• Free Thyroxine Index
• Triiodothyronine (T3)
• T4, direct
• Reverse T3, serum
• T3, free

(Note that the first 5 tests listed here are all included in Labcorp's Thyroid Profile II)

Many doctors will only test for one or two of these things, but it's important to get the full panel of thyroid tests. My hypothyroid was missed at first because of not getting all the tests. In my last round of tests in December, ALL of those tests were low, except T3, which was already being treated.

Once we had the results, my doctor worked with me to find the right combination of meds. For me that was 10 mcg liothyronine (which increases T3 only and I'd already been on for two years), with 30 mg Armour Thyroid added last month to bring the rest up. We're still in the experimentation phase; I'll go back for another round of tests in a few weeks to see how this combination is working.

Immune Dysfunction

 

As always with ME/CFS, immune dysfunction was at the heart of both of my relapses last year. The first was triggered by COVID, which led to my immune system staying in over-activated "fight" mode for months. The second relapse was triggered by hormone changes, but those affected the immune system, and I was back to the constant flu-like aches that tell me my immune system is in overdrive (other common symptoms of immune activation include sore throats, swollen glands, and/or feeling feverish, even if you don't have a fever).

Again, refer to my Relapses and Recoveries post from mid-2022 for details on how I treated immune system activation. 

Interestingly, with that relapse at the start of the year, increasing my dose of inosine (an inexpensive immune modulator, sold as a supplement) helped me recover. But this time, with the more severe relapse in the second half of the year, it turned out that stopping inosine and taking a break from it helped me. This is not as crazy as it sounds. With immune modulators (that help to normalize the immune system, rather than suppressing it or boosting it), you must constantly change the dose in order to keep them effective. I had done that with inosine for the past 10 years or so, alternating high-dose weeks and low-dose weeks and occasionally taking a two-week break. But I think that this time, with my immune system so overactive, even the inosine was too much for it, and stopping it completely helped. It's a treatment that has helped me (and my son) tremendously over the years, so I will keep it in mind to use again.

Finally, as in April, another short round of steroids (just 5 days of prednisone) helped to temporarily suppress my immune system, giving it a chance to sort of reboot and come back to normal (well, as close to normal as my immune system gets). You can read more details about using steroids short-term like this in my Relapses and Recoveries post (it is never a good idea to use steroids long-term with ME/CFS, since parts of our immune system are under-active). Also note that I tried a 5-day round of prednisone in September, when I was at my worst, but it had no effect. I needed to first treat all the different hormone issues and get back to a somewhat balanced endrocrine system, and then the steroids helped.

So, that was my 2022. I hope that 2023 will be much better!

How was last year for you?

 

What treatments help you?

 

Share your experiences (or any questions) in the comments below.

 

Setting Goals When Chronically Ill: Improve Your Life in Tiny Steps

I was absent the past week due to a family funeral. Our brother-in-law died unexpectedly on January 1, so my husband and I quickly made plans to travel to Texas for the memorial service last weekend. I had no intention of flying anytime soon, but San Antonio is about a 5-day drive from here! Of course, I wore my mask the entire long day of airports and planes (and also most of the weekend). I also, for the first time ever, requested wheelchair assistance from the airline, and wow, what a difference! It helped so much, and all the people who helped me were so kind. If you've never requested it before and need to travel, definitely give it a try. It prevented bad over-exertion crashes so that I could enjoy time with our nephews and their families and recover quickly once back home.

While I catch up here and get back into a more normal routine, I wanted to share this video I posted just before our trip. It's called Setting Goals When Chronically Ill: Improve Your Life in Tiny Steps. It describes a process I have used for many years, with loads of simple tips and strategies to help you meet your goals, change habits, and improve your life--all in ways that are doable even in lives severely limited by chronic illness, even if your only goal is to be happier and find more joy in your life. You can watch the video on Youtube or I will include it below: 

I would love to hear how you are starting the new year, and any advice you have for setting goals and making improvements when you are chronically ill. You can leave comments below or connect with me on Twitter or on this blog's Facebook page.

Happy New Year!

Favorite Movies Watched in 2022

I reviewed just 9 movies in 2022, in part because there is so much great TV to watch now. However, if I took the time to review a movie, it was because I really enjoyed it, so any movies on my 2022 list are worth watching, not just my top picks.

The TV icon in the image above is still mostly accurate, as we once again watched just one movie in a theater last year because my health was so poor most of the year. I'm hoping to get out to the recliner theaters a little bit more in 2023!

As in years past, you can see my full list of movies reviewed this year further down, and my top picks in each genre just below. To see all of the movies I have reviewed on my blog (a considerable list), check out the Movies tab, where they are listed by genre, though it's getting harder to categorize a movie into just one genre as there's so much cross-over now. Links go to my reviews, with a trailer. Note that where each movie is available might have changed over the years, since I first reviewed it, so double-check to see where you can watch it now.

Best of the Best Movies Watched in 2022:

Best Action/Suspense/Thriller 

Parasite

clever, funny, family drama that turns into a suspenseful thriller 

(Oscar winner: Best Picture)

Best Drama

Where the Crawdads Sing

Murder mystery/legal drama/love story/coming-of-age story set against a gorgeous natural backdrop

 

 Best Comedy 

Licorice Pizza

nostalgic coming-of-age comedy/drama set ion 1970's L.A. 

(nominated for Best Picture)

Best Sci-Fi

The Adam Project  

heartwarming, funny, action-packed sci fi adventure 

All Movies Reviewed in 2022:

I only review movies I really like, so all of these are worth watching:

Action/Suspense/Thriller

Glass Onion - fun, eye-popping, suspenseful mystery with an all-star cast

Parasite - clever, funny, family drama that turns into a suspenseful thriller (winner: Best Picture)

Drama

Honey Boy - entertaining & moving film about a dysfunctional Hollywood childhood

The Power of the Dog - tense Western drama with emotional complexity (nominated for Best Picture)

Where the Crawdads Sing - Murder mystery/legal drama/love story/coming-of-age story set against a gorgeous natural backdrop

Comedy

Licorice Pizza - nostalgic coming-of-age comedy/drama set ion 1970's L.A. (nominated for Best Picture)

The Lost City - a light, fun adventure-romance

Sci Fi

The Adam Project - heartwarming, funny, action-packed sci fi adventure

Finch - warm, funny, suspenseful drama set in a post-apocalyptic world

Favorite TV Shows Watched in 2022

It's time for my annual wrap-up of my favorite TV shows reviewed in the past year! These are not necessarily new shows, but they are shows that we enjoyed last year, enough that I took the time to write a review. They run the gamut, covering all kinds of genres, so there's something for everyone here!

Listed down at the bottom of this post are all of the shows that I reviewed here on my blog in 2022. I have also added all of these to my TV Reviews tab on the blog, so you can come back anytime to see ALL of the shows I have ever reviewed here (note that where to find shows may have changed over the years). And check out my Summer Shows 2021 and my 2022 Fall TV Preview posts for lots of other shows we enjoyed this year, some carried over from past years (everything listed under Fall New Shows we tried and enjoyed!).

I only review shows I like, so anything listed here or on the TV Reviews tab is worth trying. I didn't write a lot of TV reviews last year, so try them all!

Best of TV   

First a few superlatives--my favorite shows reviewed last year in each category/genre--always tough choices to make because TV shows are just getting better and better. Remember that we enjoyed all of the shows reviewed; see the full list at the bottom of the post. Links are to my reviews, including trailers and details on where to find each show (subject to change).

 Best Drama

The Handmaid's Tale (H)

Glad I only just reviewed it this year so I could call it out - some of the best TV ever.

 

Best Crime/Mystery/Thriller/Legal/Action

4-way tie? No? OK, then ...

Shining Girls (Ap) (also fits under Sci Fi)

 

 Best Sci Fi 

Kindred (H)

(my current favorite) 

Note this is time travel with no scientific explanation, so historical fiction is a more apt category.

 

Best New Show

The Bear (C, H) 

(I added this category just to mention this show!)  

 

All TV Shows Reviewed in 2022

So much good TV last year!

KEY: Available on:

A = Amazon Prime

C = Cable and/or Cable On Demand

Ap = Apple TV

CBS or P+ = CBS All Access (now Paramount+)

H = Hulu 

HBO

IMdB

N = Netflix

P = Peacock
S = Showtime

(Offerings from subscription services change all the time, so double-check. Also, some shows are available for an additional fee on Amazon Prime whether you subscribe or not. Most networks offer some episodes of every show for free at their own websites. Click the links below for my review and details on where it is available.)

Drama

The Bear (C, H)

The Handmaid's Tale (H)

Transplant (C, P)

 

Crime/Mystery/Thriller/Legal/Action

The Flight Attendant (HBO) with humor

The Old Man (C, H)

Shining Girls (Ap) (also fits under Sci Fi)

So Help Me Todd (C,  P+, H). with humor

Sci Fi 

Kindred (H)

Movie Monday: Glass Onion

We had our usual wild New Year's Eve, my lying on the couch and my husband in his recliner, watching a movie (and I did make it to midnight!). This year we chose Glass Onion: A Knives Out Mystery, and it lived up to all the great things we heard from others.

First, you don't have to watch Knives Out to see Glass Onion (but you should see it because it's a great movie--my review at the link). The only common denominator is Detective Benoit Blanc, played by Daniel Craig, who in this movie, has been invited to a mystery weekend on a private island by one of the world's richest men, tech giant Miles Bron (Edward Norton). Miles has also invited his five closest friends: Claire (Kathryn Hahn); Duke (Dave Bautista), who brings his girlfriend, Whiskey (Madelyn Cline); Birdie (Kate Hudson) who brings her assistant, Peg (Jessica Henwick); Lionel (Leslie Odom, Jr.); and Andi (Janelle Monae). The invitation is an elaborate wooden puzzle box, and Miles' set-up on the tiny Greek island is super-luxurious. At first, it seems like a gathering of friends for a fun murder mystery weekend, but you soon realize there is a lot of tension behind the scenes among the old friends. These backstories and issues are slowly revealed, amid sunshine and gorgeous scenery, until a real-life murder shakes up the guests and the host. Good thing world-famous detective Benoit Blanc is there! 

This movie is pure fun. The scenery and cinematography are eye-popping and colorful, the all-star cast is excellent, the mystery is twisty and unpredictable, and a great sense of humor runs through everything. In fact, it's hard to catch all of the fun asides in this fast-paced, action-packed mystery. In an interview, Daniel Craig said it's best to watch the movie twice to catch all the Easter eggs. It's a 2 1/2-hour romp that will keep you guessing right up until the famous detective solves the mystery (though the audience is let in on a secret partway through). If you're looking for entertainment and escape, this is the perfect movie to banish those winter blues.

Glass Onion is in theaters and available on Netflix.

Check out the trailer below for a taste of the colorful exuberance of this unique film:

Exciting New ME/CFS and Long-COVID Research

There is SO much new and exciting research happening that will benefit both those of us who've had ME/CFS for years and newer patients just struck down with long-COVID more recently. One source for these new studies is the Open Medicine Foundation (OMF), which has been studying ME/CFS for years.

This fall, OMF hired me to do some freelance writing, reading scientific summaries of five of their new research projects and writing brief, easy-to-understand recaps for patients, their families, and OMF donors. I am happy to now share these summaries with you, each written for laypeople and each presenting some very exciting opportunities for new discoveries about our disease.

Currently, you can access all of these layperson summaries from OMF's News page, but here are some quick links - I promise all scientific terms are explained simply!

Neutrophil Study - this study by Ron Davis and his Stanford colleagues aims to identify neutrophil abnormalities in ME/CFS patients (and yes, don't worry - my summary at the link explains what neutrophils are!). This study could potentially lead to a new biomarker for ME/CFS.

Post-Exertional Malaise (PEM) - conducted by Dr. David Systrom, the top PEM expert, to better understand the causes and effects of PEM (aka exertion intolerance), a feature unique to ME/CFS that is often the most debilitating part of the disease.

Does ME/CFS Have a Biomolecular Signature? - the aim is to identify a unique combination of biochemical characteristics present only in ME/CFS, perhaps leading to diagnostic tests or treatments.

Does ME/CFS Change Molecularly Throughout a Day? - I'm very excited about this study because we patients know that our ME/CFS is constantly changing, day to day and hour to hour, but no one has studied these changes in such detail before!

Raman Spectrometry-Based Biomarker Discovery for ME/CFS  - this study aims to characterize the biochemical signature of ME/CFS, using a specialized kind of testing.

Aren't these exciting studies? I can't wait to hear the results! Scientists are really starting to dig into the nitty-gritty details of our disease.

I also helped OMF find families to interview for this excellent article, The Crisis of Sick Children with ME/CFS and Long-COVID, featuring families from our Parents' group on Facebook.

I think all this new research bodes well for a Happy New Year!

Chronic Illness Vlog 12-27-22: Holiday Preparations!

Somehow, in the midst of a crazy busy week, I managed to record a few short video clips for a weekly vlog! Fortunately, I was feeling relatively good last week, especially compared to the past few months. I did have one mysterious crash mid-week that turned out to be not-so-mysterious!

You can watch this short vlog on YouTube or below:

How are YOU this week?

And how did you manage the holidays this year?

Let me know in the comments below.

Holiday Help for the Chronically Ill

I have been immersed in holiday preparations (I successfully did a little bit each day this year to avoid the last-minute rush!), but I wanted to take a few minutes to wish you all a happy holiday season and to offer some tips, support, and fun to help you through this often-difficult time for those with chronic illness.

First up, the part of the holidays I struggle with the most (and many of you, too, from your posts and comments) is family relationships, which can be challenging when you're chronically ill. Those challenges multiply with the stresses and expectations of the holiday season. That's why I wrote Managing Family Relationships - Holidays and Beyond, which is excerpted from my book. This article/chapter provides practical tips to help you not only manage relationships but even enjoy the holiday season, in your own way.

Last year at this time, also in a time crunch without time to write my own post, I collected Chronic Illness Tips and Support (and Fun!) from other chronic illness bloggers and writers. Check out that round-up of support, practical advice, and some time-out fun, too. There is a lot of collective wisdom in the large chronic illness community!

Finally, when you just need to take a break from all the activity and people and noise, check out Movies and TV for the Holidays (or Not!), my own collection for the season. I included some of my favorite holiday movies, old and new, and some outstanding, uplifting non-holiday movies and TV shows, if you just need to escape for a bit. Re-reading this list reminds me of how great these films and shows were!

OK, that's it for me until after Christmas. I still have a few more decorations to put up, cooking to do tomorrow, and my son and his girlfriend are coming for dinner in a bit. Trying to pace myself!

How are you doing this holiday season?

Do you have any tips or favorite holiday movies and TV shows?

Please share in the comments.

Enjoy the holiday season, in whatever way you can!

TV Tuesday: Kindred

One of my favorite books read this year was Kindred by Octavia Butler (my review at the link), which I read for a book group hosted by my local independent bookstore in February. This historical fiction time travel story blew me away, so when I heard that a TV adaptation was coming, I was thrilled! My husband and I started watching it on its release date last week. We are three episodes in so far and are both loving it.

Dana, played by Mallori Johnson, is a young writer who has just moved cross-country from New York to California. She sold her grandmother's house in Brooklyn and purchased a house on a peaceful tree-lined street in L.A. She meets Kevin, played by Micah Stock, a waiter in the restaurant where she's just gotten into an argument with her aunt and uncle, her only family in town, who don't seem pleased about her recent move. Dana and Kevin get to know each other over the next two days, as he helps Dana buy some essentials for her empty house. He spends the night but wakes to Dana screaming on the floor. She's just been transported to a Maryland plantation in 1815, where she saw a white boy named Rufus drowning in the river and saved him. While she was leaning over the boy, after reviving him with CPR, his mother arrives and begins beating her, and his father points a gun at her. Then, Dana is back in her home, with Kevin asking what happened. This continues, as she and Kevin try to figure out what is happening and why she keeps getting pulled back. Meanwhile, in the present day, Dana has some new nosy neighbors who keep coming to the house to investigate the screams and clearly suspect Kevin is abusive to Dana. Then things really get interesting.

If you've read my reviews before, you know I hate spoilers, so that is just the barest outline of the first episode or two, as much as is shown in the trailer. SO much happens in this story. I read the book and loved it, and my husband has not read the book, but we are both enjoying the TV show, so I recommend it whether you know and love this story or are unfamiliar with it. There are a few changes and additions to the TV show, but so far, they all add to the story rather than detract.  The main actors, playing Dana and Kevin, as well as the people back in the 1800's, are all excellent in their roles. Dana's fear and Kevin's confusion are palpable, as this unbelievable thing continues to happen. It's all the more interesting because Kevin and Dana barely know each other but are suddenly flung into life-or-death situations (this is one of the changes; in the book, they are married). The settings, both modern and historic, are rendered in great detail, making both times feel real. The suspense and tension are keeping us riveted to the screen.The premise is so compelling, with so many layers to it, that it's hard not to just binge the whole thing all at once, but I want to make the 8 episodes last. Seeing a modern Black woman suddenly stuck on a plantation during slavery times is disturbing but also powerful and gripping. This is one of the best shows on TV right now! I can't wait to see the rest of the season.

Kindred is streaming exclusively on Hulu.

Chronic Illness Vlog 12-12-22: Up and Down and a Dose of Nature

While I was able to finally recover from my three-month-long relapse, thanks to starting some treatments and stopping others (more on that in a future post), I'm still not quite back to what I consider my "normal" baseline.

So, this vlog from last week provides a pretty typical view of how I'm doing right now, with some good and active days, some run-down days, a COVID scare, and a nice dose of much-needed nature to share with you.

I had a very busy day yesterday (too busy, clearly) and am feeling pretty crummy today, so the ups and downs continue. This time of year is always tough for me, with too much to do. As a book blogging friend said to me earlier this week, "I can barely keep up with everything normally, and then to add holiday preparations--impossible!" 

Right now, I am trying to decide if I can manage my neighborhood book group tonight. I haven't been able to go since May, and I did have a good, long nap this afternoon ... but I'm still not sure I have the energy. After that long relapse, though, I have been reminded of how much I need some social interactions and to see friends once in a while. I still have two hours left to rest and decide!

Tell me how YOU are doing this holiday season?

How's your health been?

Is this time of year hard for you?

Let me know in the comments below.

Movie Monday: Licorice Pizza

Last weekend, with many of the shows we watch on cable on hiatus until the new year, we decided to watch a movie. We chose Licorice Pizza, a 2021 movie that was nominated for three Oscars, including Best Picture. It got a 91% on Rotten Tomatoes, and it was on my (very long!) list of movies I've been wanting to watch. We enjoyed this coming-of-age film set in the 1970's.

Gary, played by Cooper Hoffman (son of the late, great Phillip Seymour Hoffman), is a precocious fifteen-year-old in L.A. who's been working as an actor since he was a young child. One day at school, he spots a young woman he's never seen before. Alana, played by Alana Haim, is twenty-five and working for the photographer at school that day, but bold Gary asks her out. She eventually agrees to meet him for dinner (he's very persuasive) but emphasizes that it's just as friends. Despite their age differences, Gary is the one who is confident and knows exactly what he wants from life (plus he makes a lot more money than she does), which is appealing to Alana since she isn't sure what she wants to do, except that she does not want to work for a school photographer. Gary brings Alana into his world. It's clear he's in love with her, but they are just friends, though there is definitely some tension. They have many adventures together and apart, they talk and have fun and sometimes argue, and the two of them spend a lot of time together, often with Gary's friends, and get into all kinds of trouble. Gary starts a couple of businesses and helps Alana see the potential in her own life, though she eventually finds her own passion.

All of these exploits are set against the backdrop of 1973 L.A. And it's a whole lot of fun to accompany Gary and Alana on their explorations! The fashions, the colors, the cars, the current events, and the settings are all vibrant and entertaining. Accompanying all of that is a great 70's soundtrack. Though Gary and Alana are definitely the center of attention here (and both are excellent in their roles), the movie is filled with big-name cameos, including Sean Penn, Tom Waits, and Bradley Cooper. And did I mention it's funny? This movie has a great sense of humor. My husband described this movie as quirky (which is not always a compliment from him), and it is definitely a little weird. But I thoroughly enjoyed this nostalgic, enjoyable trip back in time that often left a smile on my face. It's not deep, but it's a whole lot of fun!

Licorice Pizza is currently available free on Amazon Prime and Paramount+, plus available for a fee on many other services.

Gifts Created by and for Spoonies (Newly Updated!)

(Note: spoonie refers to anyone living with chronic illness and disability.) 

This holiday season, why not help to support your fellow chronic illness peeps by purchasing cool, unique gifts created by those with chronic illness and disabilities? Or maybe you deserve the gift of self-care for the new year!

When I put out a call for gifts created and sold by those with chronic illness, I was inundated with all sorts of wonderfully creative items! Some are made specifically with spoonies in mind and others would make great gifts for anyone on your list. And you'll be helping to support fellow spoonies! Check out these awesome items:

Books

Suzan L. Jackson (I had to include my own book, too!)

Finding a New Normal: Living Your Best Life with Chronic Illness – guidance on emotional coping, daily living, relationships, and more.

Available anywhere books are sold, in paperback and all e-book formats.

Available here. 

Melissa Gijsbers

Melissa's son has ME/CFS, and she wrote a children's book about his experience, 3, 2, 1 ... Done, plus lots of other children's books and books for writers.

Kristin Houlihan

Kristin has written Lift the Mask: a short collection of poetry and lyrical prose which is very brain fog friendly! "Poetic and heartfelt musings on life, parenting, and faith, told through the lens of a chronically ill and disabled mom."

 

Lene Anderson

Lene is an award-winning writer with rheumatoid arthritis (RA), She has several books, including Your Life with Rheumatoid Arthritis: Tips for Managing Treatment, Side Effects, and Pain and Chronic Christmas: Surviving the Holidays with Chronic Illness, which sounds very helpful right about now!

Amy Arthur

Amy has a brand-new book coming out December 28 (available for pre-order now), Pace Yourself: How to have energy in an exhausting world. The link goes to the UK Amazon website, but they do also deliver to the U.S. (and probably other countries as well).

 

K.T. King

Fiction (including Little Eden series) and nonfiction (including 21^st Century Prayers series), available in paperback and e-book. Author has ME/CFS.

Available here.

JK Morgan

This chronically ill writer has published novels, short stories, poetry, and more. You can read all about her and her work on her website. Many of her varied books are available on Amazon.

 

Kathleen O’Shea

So Much More Than a Headache: Understanding Migraine Through Literature

Available in paperback and e-book.

Victoria Mack

5-Minute Gratitude Journal for People with Chronic Illness - A beautiful journal, with inspiring and supportive prompts to help with mindfulness, gratitude, and self-care.

Available here.

 

Infinitely Chelle – Chelle del Rosario

Beautiful notebooks and reading journals (wide variety with fun prompts).

Available here.

Jen Hardy’s Planners

3 planners: Path to Happiness 5-year Journal, Chronic Illness Journal for Moms, and a Business Planner.

Available here.

 

Jewelry

Words as Medicine Shop – Etsy – Christina B.

Wide variety of earrings – all different kinds of themes, shapes, colors, including holiday themes. I love earrings and want all of these! I ordered the gingerbread men/peppermints last year.

Available here. 

(Also see under Other Gifts - several sellers with multiple items include jewelry)

Other Gifts

Crafty Miss B – Etsy - Beth

Wide variety of hand-crafted items, made with embroidery, wood, metal, and fabric. Gifts include bookmarks, jewelry, decorations and ornaments. Creator has ME/CFS. She is on a break but will return in the new year.

Only ships in UK.

Available here.

FUMS – Kathy Reagan Young (has MS)

Wide variety of gifts with the FUMS logo, including hats, tote bags & fanny packs, clothing, masks, and more.

Available here. 

SunnyAuntCreations- 

Her RedBubble shop features beautiful watercolors on clothing, cards, stickers, and other products, and her Etsy shop includes watercolor prints and cards. Her work is beautiful!

BibiPins - 

Black, queer, disabled creator offers a wide range of gift items, including stickers, pins, stationery, compression garments, and much more! Full shop here.

 

InPhusions - 

Botanical body butters aimed at others with skin conditions and pain, from a Black, queer, trans, disabled creator. See and order products here.

Grace and Magic – Etsy – Katherine Grace

Beautifully designed planners, journals, notebooks, and trackers, available in print, digital, and printable pages to help with all kinds of planning, organizing, tracking, and self-care.

Available here.

Siren Blossoms – Heather Wright

A wide variety of printables, jewelry, and books, available through Etsy, Amazon, and other platforms. All links here:

Available here. 

Achy Smile Shop – Erica Nicole Carrasco (chronic migraine)

Beautifully-designed migraine-themed shirts, stickers, hats, bracelets, and phone cases.

Available here.

 

RatnaRaniBracelets

The creator has ME/CFS and offers a wide variety of artwork, jewelry, clothing, skin serums, and more. Visit her Etsy shop.

 

Chronic Illness Shop Directory:

 

Ability Shop: Chronic Illness and Disability-Owned Small Business Directory

A directory of businesses of gifts, businesses, books, art, and services from those with chronic illness and disabilities.

Available here.

WOW! So many unique gifts from so many creative folks with chronic illness and disabilities! I love the idea of getting cool gifts (for others and for myself) while also helping to support fellow spoonies. 

Happy Shopping!

And if YOU create gifts or other items that are available for sale and not on this list, please include your link in the comments below (if you have trouble leaving a comment on a mobile device, try using a computer).