Thursday, April 04, 2024

Chronic Illness Vlog 4-1-24: Out in the World, Home Improvements & Easter


I recorded a chronic illness vlog last week, full of videos (and some photos) that show an honest view of my life with ME/CFS and Lyme. And these days, it's a pretty good life!

I am still doing really well and have been quite active, as you can see in the video. I've been able to see friends, go shopping (!), run errands, and even begin to work on our house a little (baby steps!). Small steps toward decluttering feel so good after feeling so helpless the past few years; it feels great to be productive again. Last week, I also went to the movies with my husband and enjoyed a weekend trip to visit family for Easter. This visit was a far cry from our last trip, for Thanksgiving in November, when I was so horribly sick that I needed a second nap between dinner and dessert.

As I've mentioned here before, my recent big improvements came from treating chronic yeast overgrowth (which makes me feel awful). I thought it was already well-controlled ... but I was wrong! It took all of the treatments in my Treating Yeast Overgrowth post, plus a major change to my diet at the beginning of the year. The other factor was effectively treating thyroid dysfunction (hypothyroidism, in my case). My doctor and I worked on that for over a year, but I couldn't see the full improvement with the yeast overgrowth making everything worse. 

That's the way it is with these complex immune disorders; sometimes you can't see the benefits of one treatment until you tackle another aspect of the disease. I have not experienced a single crash from over-exertion (or for any reason) yet in 2024, which feels like a miracle. I'm feeling the best I have in several years. Keep in mind that prior to this, I also treated many other aspects of the disease (see Effective Treatments, newly updated). It's like playing whack-a-mole!

You can watch last week's vlog on Youtube or right here, below:


How was YOUR week?
How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Tuesday, April 02, 2024

TV Tuesday: Tracker

Several of our favorite shows have returned for new seasons (including Will Trent, The Rookie, and So Help Me, Todd! - my reviews & trailers at the links). But there is one new show that began in February that we're really enjoying: Tracker.

Colter Shaw, played by Justin Hartley (who played Kevin on This Is Us), is a loner who travels all over the U.S. in his pick-up truck and classic Airstream trailer (a set-up my husband drools over in every episode!). Colter calls himself a "rewardist"--he earns a living by finding missing people when a reward is offered. Teddi, played by Robin Weigart, and Velma, played by Abby McEnany, coordinate his schedule and business and help him from afar. His buddy, Bobby (played by Eric Graise), is a disabled vet in Chicago who helps out with some mad hacking skills. And he gets an occasional assist from Reenie, played by Fiona Rene, a talented lawyer with whom he definitely has a history. Mostly, though, it's just Colter out on his own, tracking missing persons in locations all over the country, and avoiding getting too close to even his closest friends, like Bobby and Reenie. In the first episode, we learn that he had a difficult upbringing, with a survivalist father who had the family living in a remote area in the woods. That's where he learned his excellent tracking skills, though his childhood also left him with some emotional scars.

Each episode takes place in (and is named for) a different place and focuses on a new case, and in each one, as Colter is searching for the missing person, we learn a little bit more about him. For those who enjoy travel and the outdoors (that's us!), there is plenty of beautiful nature footage in widely varied places. Hartley is excellent in the lead role, and we're enjoying all of his co-stars, too. And talk about writing credentials! The show is based on a novel, The Never Game, by thriller all-star Jeffrey Deaver and was created and adapted for television by Ben H. Winters, another of our favorite authors (see my review of his The Last Policeman mystery-apocalyptic trilogy). The mysteries and suspense here are great, and it also has character depth and emotional complexity. We're loving it so far and can't wait to see where Colter goes next!

Tracker is currently airing on CBS on Sunday evenings, with seven episodes so far, so it is available On Demand and on Paramount+ (CBS' streaming service). It's also available on Pluto TV, Hulu, and for a fee on major Pay-On-Demand sites including Amazon Prime (starting at $1.99 per episode or $19.99 for the first season).

Monday, March 25, 2024

Movie Monday: American Fiction

Looking for a movie to watch Saturday night, I went through the list of Oscar Best Picture nominees, and we chose American Fiction. I'd heard great things about it, and my husband trusted me (well, that, and the 93% on Rotten Tomatoes and 96% audience score!). We both enjoyed this warm, thoughtful, entertaining movie about books, writing, and the publishing industry.

Thelonius "Monk" Ellison (yeah, it's a mouthful--that's why he goes by Monk), played by Jeffrey Wright, teaches disinterested college students about literature and writing and has published several literary fiction novels. He's a smart, well-educated man and his books have been critically acclaimed, but they don't sell well. When Monk participates in a literary festival, his session is poorly attended, so he goes down the hall to see where everyone is. A packed room is listening raptly to a well-spoken Black female author, played by Issa Rae. Her widely popular novel, We's Lives in the Ghetto, of which she reads an excerpt, represents everything Monk feels is wrong with the publishing industry. It relies on Black stereotypes: rapping, trash-talking Black characters dealing with teen pregnancy, jail, and deadbeat dads. Monk is disgusted, but when he's got writer's block while working on his latest novel, he writes his own "real Black experience" novel as a joke. His editor is shocked when he sends it out, and Monk is offered the highest advance he's ever gotten (by a long shot) from a major publisher. As disgusted as Monk is with the whole thing, he desperately needs money. His sister, played by Tracee Ellis Ross, and brother, played by Sterling K. Brown, are both broke after painful divorces, and his mother has dementia and clearly needs 24-hour care. Needing to care for her, he publishes the book under a pseudonym, and the movie rights are quickly sold for an astronomical sum. Struggling with family issues and wanting to get closer to a woman he's been dating named Coraline, played by Erika Alexander, Monk is conflicted but goes forward. As you might expect, things get really complicated (and hilarious).

This is a very funny movie, but it's smart humor with a hefty dose of irony that the audience is in on. It's also poignant and heartwarming. While it is clearly skewering the publishing industry (and some readers), it's also a deeply-felt, moving story about family. And of course, it is a thoughtful, original approach to thinking about race and biases in our society. It won the Oscar for Best Adapted Screenplay (it's based on the novel Erasure by Percival Everett), and it's clear why: the writing is outstanding. That, combined with excellent performances by its A-list stars, makes this movie an absolute winner. My husband and I both loved it and laughed all the way through.

It is streaming on MGM (I didn't even know they had a streaming service). It is also available to rent for $3.99 on Amazon and on other outlets, like YouTube, Apple, and Roku.

I'm including a "clean" trailer below, which showcases the humor of the movie, but the trailer with the swearing in it is even more funny and highlights the roles of Ross (as his sister) and Brown (as his brother).


Friday, March 22, 2024

New ME/CFS Research Finding: Protein Disrupts Cells' Energy in Mitochondria


In a series of surprising twists worthy of a thriller and a bit of serendipity, researchers from the NIH's Heart, Lung, and Blood Institute (NHLBI) were studying genetic mutations in a family with cancer and ended up making an important discovery in ME/CFS research. It's a fascinating story, with excellent repercussions for ME/CFS patients, possibly leading to clinical trials in the near future!

One member of the family being studied, a 38-year-old woman, had a genetic mutation associated with the cancer that ran in her family. However, this woman (and none of her family members) had experienced worsening fatigue since she got mono (aka glandular fever) at the age of 16, including an inability to exercise. Sound familiar? As often happens, she'd never been diagnosed with ME/CFS, but clearly, she had all the hallmarks of our disease.

Rough outline of what these researchers discovered:

  • Looking for genetic mutations responsible for cancer, they found a mutation in gene TP53. It was causing very high levels of a protein called WASF3 in the woman's samples but not in her siblings.
  • The researchers did a literature search of WASF3, and guess what popped up? A little-known ME/CFS study, part of an effort by top ME/CFS researcher Suzanne Vernon, from 2011. She and her team had identified 227 patients with ME/CFS who were thoroughly examined and tested by top ME/CFS experts, creating an enormous set of data (which makes me wonder why the NIH ignored this fabulous set of samples and data when they recently published their "breakthrough" study of a measly 17 patients). The team published a paper that identified eleven different genes that were different in ME/CFS patients versus controls and specifically mentioned WASF3 as possibly being involved in the mechanism of fatigue and exercise intolerance.
  • Finding that obscure paper, the NHLBI researchers kept digging and assessed other markers in the woman they were studying, compared to that 2011 ME/CFS paper.
  • They also kept digging into the role of WASF3 and the effects when levels are high, as they were in both this woman and the ME/CFS patients studied.
  • The researchers found that her muscle tissues had a lower oxygen consumption rate and reduced energy production.
  • Next, they used RNA to reduce WASF3 levels in both her cells and healthy controls, and they saw mitochondrial (the energy engines in our cells) function improve across the board.
  • Then the researchers produced mice with high WASF3 levels, and guess what? Their exercise capacity and ability to recover was significantly decreased (again, sound familiar?).
  • They discovered that high WASF3 levels also causes high Endoplasmic Reticulum (ER) Stress Response. I know that's a mouthful, so let's just call it ER stress, as they do. This is important because high ER stress also occurs in other diseases.

The bottom line:  

These researchers studying cancer have found a new mitochrondrial abnormality that helps to explain not only fatigue in ME/CFS but also our characteristic exercise intolerance/post-exertional malaise. Even better: ER stress is a factor in other diseases, so there are already studies to look at supplements and medications to reduce it. This research team now wants to follow-up with possible clinical trials to try some of these treatments for ME/CFS specifically. And, of course, there's the fact that a whole new team of researchers are now fascinated by the complexities of ME/CFS and motivated to keep digging.

Here is the paper published last year by this team on WASF3 and ME/CFS. And, again, the 2011 paper on 11 genetic abnormalities in ME/CFS that helped them to connect the dots. 

To understand all of this, I read an excellent, easy-to-understand article in Science about the new study. And, as always, I relied heavily on Cort Johnson of Health Rising who worked his usual magic to make this complex series of events and scientific studies understandable. You can read Cort's article here (his sidebar, The Gist, is always helpful for a summary).

Exciting news! 

The fact that the research team is already planning clinical studies gives me hope.

What are your thoughts on these new study findings?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Friday, March 15, 2024

Treating Endocrine (Hormone) Dysfunction in ME/CFS


I just updated my summary of ME/CFS Treatments (always available through the tab at the top of the page on my blog). It provides a good roadmap for patients and doctors to all of the many effective treatments that are available now for ME/CFS and long-COVID. Many of those treatments are inexpensive and readily available everywhere. I had to add a whole new section on treating endocrine dysfunction because it's something I hadn't covered completely on my blog in the past. I decided to reprint it here, as a new blog post, to be sure everyone sees it.

ME/CFS causes severe endocrine dysfunction--that's the part of the body that controls hormones, and hormones control everything. Messed-up hormones are behind sleep dysfunction (which can be corrected) and are one factor behind Orthostatic Intolerance, too. Since deep, good quality sleep is essential to the endocrine system, correcting sleep dysfunction should be your first step. As my doctor told me 21 years ago, getting good sleep will improve everything (she was right). 

(Note that an endocrine specialist is usually only focused on diagnosing and treating primary endocrine disease, like Graves' disease, Hashimoto's, and others. It may be helpful to see one to rule these kinds of things out, but for most patients with ME/CFS, your primary care doctor or GP can help you with the areas outlined below.)

Here are some other areas of endocrine dysfunction:

Sex Hormones:

Sex hormones can wreak havoc in ME/CFS, too. When I was younger, I got much, much worse whenever I had my period. My doctor switched me to 90-day low-dose birth control pills, which worked great! They keep my hormone levels steady for 3 months at a time. Then, every 12-14 weeks, I stopped taking them for 5 days, got a period, and then went back on them. So, instead of crashing from my period every 4 weeks (25% of my life!), it was just 5 days out of every 3 months or so or 4 times a year. Much better!

In 2022, my OB/GYN told me she was retiring. Since I was 57, she said I had to be fully in menopause by then (our plan was to keep me on the birth control pills until I was past menopause, to prevent worsening from menopause symptoms). She wanted to see me through the transition before she left (yes, she was wonderful). We both knew it would be rough--after decades of holding my hormone levels perfectly steady--but it was much worse than we'd expected! That sudden shift in hormones left me completely wiped out, all my ME/CFS symptoms worse, and mostly bedridden/couchbound. I waited six weeks for the artificial hormones to clear out of my system, got tested, and I was indeed fully past menopause. Then, she started me on Estradiol patches (estrogen replacement, also known as Hormone Replacement Therapy or HRT), along with progesterone pills. As my hormone levels evened out again, I returned to my previous (pretty good) level of functioning. My new OB/GYN has agreed this is a long-term treatment for me because of my ME/CFS (there are risks, though, so it should be discussed with your doctor. Mine ordered tests first).

Testosterone cream can also be helpful to some, especially men with low testosterone.

Thyroid:

For many, many years, I said that thyroid dysfunction was very common in ME/CFS but that I didn't have it. Boy, was I wrong! After that awful transition off birth control pills at the end of 2022, my thyroid was severely dysfunctional. Hormones are all connected (the endocrine system), so when one is off, it can throw the whole system off. This is another reason why it is so critical to correct sleep dysfunction

I was already on a low dose of one medication for hypothyroidism, but it clearly wasn't enough. I spent a full year, working with my primary care physician to normalize my thyroid function--getting lab tests (which ones is critical), adjusting medications, waiting two months to retest, etc. Finally, by the end of 2023, with medications and supplements, my thyroid was functioning well. I'm now feeling the best I have felt in years! 

And, by the way, I lost over 20 pounds just from normalizing my thyroid function (no change in diet at that time), and I am at a healthy weight I haven't seen in 20 years. That tells me that my thyroid was off for a long time. This post explains all about Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID, including which tests to ask for.

Low Cortisol:

Low cortisol all the time is a hallmark of ME/CFS. However, the top ME/CFS experts do NOT usually recommend taking hydrocortisone for low cortisol. The biggest problem is that when you add in artificial cortisone, your body stops producing it on its own. So, you take a patient who is already not making enough cortisol and give them something that makes the situation even worse over the long-term. It is likely to help in the short-term but should not be continued for more than a month or so. 

A better approach is one that has worked well for me. The endocrine system dysfunction that causes low cortisol is closely tied to all the other dysfunctional systems in ME/CFS; it's all interrelated, especially in the endocrine system. So, when you treat and correct other problems, the endocrine system just naturally self-corrects and normalizes. So, instead of treating low cortisol directly, treat immune dysfunction, correct sleep dysfunction (a huge factor in endocrine problems), treat OI, correct methylation, treat thyroid dysfunction, and treat underlying infections. When you do those things, the endocrine system just naturally begins to normalize. This has worked well for me, and when I had my 24-hour cortisol test, it was perfectly normal! It showed the expected higher cortisol in the morning, slowly decreasing during the day to a low point at night. 

 Do you have any experience in treating these types of endocrine dysfunction or any others?

Let us know what helped (or didn't).

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Friday, March 08, 2024

New ME/CFS Study by NIH - What Does It Mean?


I first heard about the newly published results of the first-ever NIH (National Institutes of Health in the U.S.) study of ME/CFS when a friend of mine forwarded an article from Medscape to me (I have some great friends). My first impression was, "Meh, not much new, and it was a tiny study," so I have been interested to see how much attention it is getting in the mainstream press and what ME/CFS top experts and advocacy groups are saying about it. Here's a brief summary:

Just the Facts

Bottom line of this study:

  • It was tiny - just 17 patients with ME/CFS. 17!! Out of the many millions suffering with the disease in the U.S.
  • But it was very comprehensive. Patients in the study underwent extensive testing in a variety of ways over the course of months, and analysis of the data was in-depth.
  • Much of what they concluded, we already knew: immune dysfunction is at the heart of ME/CFS, evidence of metabolic changes in people with ME/CFS.
  • They focused on its effects on the brain (stemming from the immune dysfunction).
  • The researchers definitely took the disease seriously, and the study paper--and all the resulting news coverage--reflects that.
  • Because of the tiny study size and the reasons why patients were excluded, we have to be careful about drawing sweeping conclusions about everyone with ME/CFS.
  • There were some very specific new findings (like specific measures of immune dysfunction) that can be further studied.
 

What Mainstream Media Is Saying

The good news is that it is getting a lot of attention in the mainstream media (which ME/CFS research rarely does), thanks in large part to the connection with long-COVID. 

Here's the NIH's press release (short and to the point), describing the results of the study. Clearly, plenty of news outlets picked up the story. And here's the full scientific study report, published in Nature Communications, a prestigious medical journal.

NPR did an excellent, short summary (you can read it at the link or listen to the story at the top of the page). They interviewed one woman who participated in the study, one of the study's authors from NIH, and four of our own experts: Nancy Klimas, Anthony Komaroff, Maureen Hanson, and Lucinda Bateman. They praised the study for its thoroughness, while noting some of its limitations. NPR was thorough as usual, and this quick update should help to educate the general public.

Science always does a great job of summarizing scientific studies for the general population, and their brief article on this study is good. I think they did a great job of summing it up right in the subtitle: Sweeping chronic fatigue study brings clues but not clarity to mysterious syndrome: "megaworkup"revealed brain and immune differences in a small patient group. Of course, they lose points for calling it chronic fatigue and a "mysterious syndrome."

It was also covered by the New York Times, Scientific American, and The Guardian. So, ME/CFS got a lot of news coverage from this report. 


What ME/CFS Experts and Advocacy Groups Are Saying

It's been very interesting to read the analyses of the study from various ME/CFS news outlets, advocacy groups, and patient organizations. 

#MEAction has an excellent, easy-to-read summary, with their analysis of the study's shortcomings and conclusions. Among their observations:

  • The study size was so small (17) because the NIH excluded anyone with "comorbid conditions." Well, guess what? Most of us (one earlier study said 80% but it is probably higher) could name a whole list of other diagnoses: POTS, MCAS, EDS, NMH, etc. One could argue (as I often do) that certain "comorbid conditions" are actually an integral part of ME/CFS, like dysautonomia/OI.
  • The rigorous requirements of the study (overnight hospital stays, exercise testing, etc. automatically excluded those with severe ME/CFS.
  • The study only wanted people in the first five years of illness. Since an earlier (excellent) ME/CFS study showed significant differences in immune markers for people sick less than three years and more than three years, this new study is mixing those together and ignoring those sick longer.
  • The study concluded that 4 of its 17 participants (24%) experienced spontaneous recovery! We all know that's not indicative of the whole population of people with ME/CFS. Earlier studies have put the recovery rate at about 5%. These strange results are probably due to the way they chose and excluded patients and their tiny sample size.
  • The study did require post-exertional malaise (PEM), i.e. exertion intolerance.
  • Most of the study's findings of immune and metabolic abnormalities have been reported in previous ME/CFS studies.
  • The study authors did find some interesting data suggesting "immune checkpoint inhibitors," which can be followed up in future research.

As always, Cort Johnson of Health Rising website provides an excellent, detailed yet easy-to-understand overview of the study and its findings. 

So, bottom line, it's great that ME/CFS got lots of attention in both scientific journals and mainstream media, and its connection to long-COVID was often highlighted. This study was a good start, but a very long overdue one. Its conclusions have limited use and relevance due to the very small patient sample participating and the reasons why patients were excluded. But, the study did have some findings that warrant follow-up. I'm just glad the NIH is finally, after so many decades, taking our disease seriously.

What are your thoughts on this new NIH study?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Friday, March 01, 2024

Happy 22nd Illiversary to Me!


Twenty-two years ago today, on March 2, 2002, I woke with the worst sore throat of my life, wracked with flu-like aches, and feeling completely exhausted. I figured I had a flu or some other virus, but we all know how that story ends!

You can read a written summary of our years of illness at the Our Story tab (or in Chapter 1 of my book) or the timeline version of our history that I wrote on my 20th illiversary.

On my 16th Illiversary, in 2018, I wrote about how the anniversary date has affected me over the years, at various points in time, including the treatments that helped me to improve.

Most interesting to me now, 22 years into this journey, is that often the date passes without me really noticing! I only remembered this year because someone else was writing about an illness anniversary elsewhere online this week. In those early years, it was devastating to think of how many years I'd been sick, since I'd left my old life behind.

These days, after 22 years, as the title of my book, Finding a New Normal, indicates, this is just normal life now. The date can be more difficult for me when I am badly relapsed (as I was for periods of the past three years), but this year, now that I am feeling better than I have in years, I am grateful that I am able to manage this well. This year, in particular, after those last few very difficult years, I am hugely grateful that I have come back to life in the past two months and am able to see my friends, go out, and be active again.

So, Happy Illiversary to Me!
(I certainly won't be eating any cake on this strict no-sugar diet!)

How many years have you been sick?

How does YOUR illness anniversary affect you?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Tuesday, February 20, 2024

TV Tuesday: The Irrational

While most cable shows had a delayed "fall" season that is only just starting now (due to the strikes), a few new shows did start on time in the fall. Our favorite is The Irrational, a crime show with a behavioral scientist at its center.

Jesse L. Martin plays Alec Mercer, a behavioral scientist at a university in D.C. Alec teaches and has two grad students working with him: Pheobe, played by Molly Kunz, and Rizwan, played by Arash DeMaxi. His ex-wife, Marisa (played by Maahra Hill), works for the FBI, and Alec's sister, Kylie (played by Travina Springer), is a brilliant computer expert who lives with him. Marisa often asks Alec to consult on a case--and sometimes Kylie and/or the grad students get involved, too--so there is usually a new case to solve in each episode. But there is also an ongoing story thread about the terrible burn scars on Alec's face. He got those scars (and spent months in the hospital, with serious burns over much of his body) many years ago, when a bomb was set off in a church. One man was convicted of the crime, but Alec and Marisa suspect there was someone else behind it who was never caught. The bombing left Alec with emotional scars as well as physical, and Marisa and her FBI partner are still looking into the cold case.

Like any crime show, each episode involves a new case, so there is always something new and different  going on. Alec's unique talents in behavioral science provide fascinating insights into victims, witnesses, and criminals that are helpful to the FBI. In each show, though, the viewer also learns more about Alec and the bombing that so traumatized him. The secondary characters are also further explored and fleshed out. Martin is outstanding in the lead role, and his co-stars are all excellent. The writing is fresh, with a sense of humor, and the cases are interesting. There is suspense and a mystery in each new episode, plus the ongoing mystery of the bombing. My husband and I have really been enjoying this show. We'll watch the final episode of its first season tonight, and we were excited to hear that it's been renewed for a second season.

The Irrational is an NBC show, so it's available On Demand if you have cable or on NBC.com (all episodes still available free for all right now) or on Peacock. It's also available on Amazon.


Tuesday, February 13, 2024

Celebrate Mardi Gras at Home, the Easy Way!



It's Mardi Gras Day! We used to live in New Orleans, so this is a major holiday at our house, as you may have heard in my video, Celebrate Everything, Big and Small, which includes loads of tips for celebrating with minimal effort. We usually celebrate on Saturday and again on Tuesday. Before the pandemic, we had an annual party with all the food, music, etc. on Saturday. With my immune issues, it's now a small celebration with our oldest friends, who lived in New Orleans when we did. We enjoyed takeout from a favorite local New Orleans restaurant (a husband and wife team who were both chefs in New Orleans, under two of the top chefs there!), plus lots of shrimp. Today, Mardi Gras day, we will finish off the season with our annual tradition of Popeye's at that same friends' house (yes, Popeye's is authentic Louisiana food). And, of course, we've decorated for the occasion, and I'm wearing purple, green, and gold with my beads on!

 
Want to join the fun? Here is a collection of ways to celebrate Mardi Gras, New Orleans, and Louisiana today...including food, recipes, travel tips, movies & TV shows, and, of course, some great books! You can also check out my column in Shelf Awareness from last year that features books about and set in New Orleans, Armchair Travel: Destination New Orleans. And if you prefer a video, check out my Recommendations for Mardi Gras Reathathon: Books, Movies, and TV Shows.
 
Great Adult Books Set In/About Louisiana (additional titles in my article linked above):
  • The Crowning Glory of Calla Lily Ponder by Rebecca Wells, author of Divine Secrets of the Ya-Ya Sisterhood - I listened to Calla Lily's story on audio and laughed out loud & bawled my eyes out! It takes place in southern Louisiana, with plenty of local color.
  • Gumbo Tales: Finding My Place at the New Orleans Table by Sara Roahen - I loved this memoir about the food, history, people, and unique culture of New Orleans.
  • Trail of Crumbs: Food, Love, and the Search for Home by Kim SunĂ©e - although this food-focused memoir covers everyplace from Sweden to France to Korea, the author grew up in New Orleans, where the food culture impacted the rest of her life.
  • Burn by Nevada Barr - part of her Anna Pigeon series, about a National Park ranger, this one is set in the French Quarter (where there's a National Historic Park). I haven't read it yet, but I plan to this year!
  • Mardi Gras Mourning by Julie Smith - I first read this back in the 90's and am rereading it now for the Mardi Gras Readathon on Booktube. It's a classic detective novel, set in New Orleans during Mardi Gras, so the setting and atmosphere are great!
  • The Book of Lost Friends by Lisa Wingate - outstanding historical fiction set in Loiuisiana, with a dual timeline in 1863 and 1987. It made my list of Top Ten Audios in 2023
  • The Vanishing Half by Brit Bennett is another excellent dual timeline historical novel, about twin sisters born in Louisiana. One moves to New Orleans and the other twin decides to "pass" as white and lives a very different life.
  • Horse by Geraldine Brooks - in this historical novel from one of my favorite authors, some of the story takes place in 1800's Louisiana.
Middle-Grade and Teen/YA Books Set In/About Louisiana:
  • Ruined by Paula Morris - a teen/YA mystery/ghost story set in New Orleans (the perfect setting for a ghost story!)
  • The Freedom Maze by Delia Sherman - a compelling middle-grade historical fiction adventure (with a touch of time travel), where a girl from 1960 travels back to 1860 Louisiana
  • Zane and the Hurricane by Rodman Philbrick - a middle-grade novel about Hurricane Katrina - powerful and gripping
  • Out of the Easy by Ruta Sepetys - most people are familiar with her two YA novels set during WWII (Between Shades of Gray and Salt to the Sea), but this historical novel is set in New Orleans in 1950

Movies & TV Shows
  • Chef  - a wonderful, uplifting movie about a family food truck that travels from Miami to LA, with a stop in New Orleans, of course! My favorite movie of the year in 2015.
  • NCIS: New Orleans - though it's a crime show, it includes many scenes of New Orleans, mention of local restaurants and landmarks, and other local tidbits, plus some great local music. They usually do a Mardi Gras episode once a season, for extra fun. It's streaming on Paramount Plus (which used to be CBS All Access).
  • Treme - we LOVED this HBO show, which we were somehow able to watch on cable at one point. You can see it now streaming on HBO Max or Hulu.
  • You can also check out some classic movies and modern classics with New Orleans settings, like A Streetcar Named Desire and The Big Easy.
  • Or tune in to watch parades and other scenes in New Orleans streaming live (or if you missed the parades, some great videos) at www.mardigras.com.
One of the locals in Louisiana
Travel
All this talk of Louisiana making you want to visit? I have written articles about visiting New Orleans  and Exploring Cajun Country - check them out and start planning your trip (plenty of food recommendations in both!). I'm certainly ready to go back!

Crawfish!

Eat, Drink, and Be Merry!
Notice that many of the books and movies about Louisiana are focused on FOOD? Yes, Louisiana - and especially New Orleans - is known for its amazing, unique food. This blog post on how to celebrate Mardi Gras includes my own recipes for some classic Louisiana dishes, plus food you can grab locally today and webcams where you can vicariously experience Mardi Gras - there are plenty of suggestions in this post that you can still manage to do between now and Tuesday. Or save it for later if you like - we eat this food all year round. 

NOTE that Zapp's potato chips - which you absolutely MUST try) have been bought out by PA-chip maker Utz, so you don't have to get them by mail-order anymore. We can now find them in local stores like Wawa here in Delaware or ordered on Amazon (Cajun Crawtator and Cajun Dill are the best flavors.)

Laissez les bon temps rouler!

Wednesday, February 07, 2024

My 2023 In Review: Chronic Illness Rollercoaster!


Chronic Illness is often said to be a rollercoaster (in fact, Riding the Chronic Illness Rollercoaster is the name of a chapter in my book!), and that was definitely true for me last year, with plenty of ups and downs in my life with ME/CFS and Lyme. I'm a little late with my usual year-end wrap-up (and only just set my goals for the new year!), but that's another fact of life when you have chronic illness; we make accommodations. 

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?" Or you can watch my short video, Chronic Illness: Tracking How I Feel, Symptoms, and Treatments. 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 very small steps toward what I want in my life, see my video, Setting Goals When Chronically Ill (Improve Your Life in Tiny Steps).

 

2023 in Review: My Health - the Data

Average How I Felt = 2.5 (1 is good; 5 is bad)

  • 13% better than 2022, which was my worst year in 21 years of chronic illness.
  • My best months were 2.2, and my worst was 3.4.
  • Things have been a lot worse for me since 2020 (see my Relapses & Recoveries post), so this was a move in the right direction!

Average % crashed = 15% (meaning I was couchbound/bedridden 15% of the time)

  • Crashed = a 4 or 5 on my scale, unable to function, stuck in bed or lying on the couch.
  • 12% better than 2022, which was a low point.
  • The average doesn't tell the whole story because there were some highs and lows.
  • My best months were April and June, with only 3% crashed, but in my worst month, November, I was crashed and nonfunctional 50% of the time.

Average exertion = 3.8 (on a scale of 1 to 5)

  • 8% better than 2022.
  • My best months were April and October, with 4.3 average exertion, and my worst month was November, with just 2.8--I spent much of that month lying on the couch.
  • I think my exertion level looks better than I actually felt; I know that I was pushing myself too hard and not resting enough during some of those early crash months. I finally gave in and rested in November.

  

What Made Things Worse Last Year:

  • Not listening to my body and resting enough when I crashed.
  • Yeast Overgrowth - this was definitely my biggest issue in 2023:
    • As with many people with ME/CFS, I suffer from chronic yeast overgrowth due to the specific kind of immune dysfunction in this disease.
    • I made the mistake--over and over!--of assuming it was under control because of all the treatments I routinely take/do that normally work effectively. This kept me from recognizing (and treating) the underling causes of my repeated crashes.
  • My diet. I was calling my diet Paleo, but honestly, I wasn't sticking it to it very strictly by last year. This was a huge contributing factor. If I had actually stuck to a strict Paleo diet, the yeast overgrowth probably wouldn't have gotten so much worse.
  • A short round of steroids (prednisone for five days) in November. Since the issue was actually yeast overgrowth, suppressing my immune system was not a good idea!

 

What Helped Me Last Year:

I tried eight new treatments (or adjustments to old treatments) last year that helped me. Below are the changes that helped me the most (some things that I tried, I'm not sure yet if they are helping or not).

  • Normalizing my thyroid function. I spent a full year working with my primary care doctor on this, getting thyroid labs every two months, adjusting my meds, waiting another two months, repeat. All that effort, patience, and persistence paid off, and I am starting 2024 with my thyroid working very well! Besides increased energy, less fatigue, and more stamina, I lost 20 pounds over the past year--back to pre-illness weight! It's been eye-opening to see what a difference this makes. I wrote all about it in Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID.
  • Changing my diet. In the very last two weeks of the year, I drastically changed my diet, once my functional medicine specialist pointed out to me that I still had thrush in my mouth, even with all the anti-yeast treatments I was on. I took her advice to "starve the yeast" by switching to a no-carbs Carnivore Diet. It is what it sounds like: meat, fish, eggs, butter, and no carbs at all. It worked, and by the first days of January, I was feeling the best I have felt in many years! Here's my video about my first month on the Carnivore Diet. I am currently about 97-98% Carnivore; I occasionally have a few bites of non-yeast-encouraging veggies or avocado. I am still feeling great (for me!). I've been seeing friends, taking daily walks, and even helping a friend with her move. Today, I went shopping for clothes for the first time in ages (my clothes are all too big now), and it is just such a thrill to be back out in the world!

 

Other Highs and Lows of 2023 for Me:

Lows: Obviously, with all of 2023's health issues and months spent on the couch, many things just didn't get done last year:

  • Not enough time with local friends.
  • Very little writing outside of my two blogs and no magazine articles.
  • No energy for our home--decluttering is getting urgent!
  • Given my poor health many months, I was not able to walk as much as I like or keep up even my tiny on-the-floor strengthening routines. 

Highs: But as always, though my year seemed awful when I was stuck on the couch in November and December, when I look back, I see some wonderful highlights:


My husband and I enjoyed 3 relaxing week-long camping vacations: to Virginia state parks in April, to the Catskills in June, and to the Virginia mountains in October for stunning fall foliage! When we travel with our camper, it is very easy and low-key. (links are to my travel vlog videos, where you can see some of the beautiful natural surroundings we enjoyed).


We enjoyed three weekends with our adult sons and their girlfriends, one at home for Father's Day, one camping in Pennsylvania and one at a rental on a lake in New Jersey. We cherish that quiet, laid-back, fun time with them!

My childhood best friend, Michelle, came to visit me in July, and we enjoyed a wonderful weekend together, reminiscing and making new memories!

In September, I finally got to meet in person my friend from across the world! Annie and her husband were visiting from Australia, and they made time in their busy schedule to meet up with us. Annie and I met online over 10 years ago, in the group I started for Parents of Kids and Teens with ME/CFS and Related Illnesses. We both had sick kids, and we supported each other and bonded. Annie later helped me run the group, and we've stayed in touch even though our "kids" are now grown up (and both doing quite well). It was such a treat to meet in person!


I stuck with my new goal to spend time outside every day and so enjoyed that extra time in nature! Given the state of my health, often that time was spent lying in a reclining chair on our deck or very slowly walking around the little cul-de-sac in front of our house, but the new habit really enriched my life. If you'd like to do the same, Join Me to Notice and Enjoy Nature More in 2024! with my #nature365 project.

 
So, that was my 2023.

How was last year for you?
 
What small joys did you experience?
 
What treatments help you?
 
Share your experiences (or any questions) in the comments below.

 

Monday, February 05, 2024

Movie Monday: Stillwater

A few weeks ago, my husband and I were looking for a movie to watch and stumbled on Stillwater, starring Matt Damon. It was excellent, combining family drama, a mystery, and legal drama, about a father trying desperately to save his only daughter.

Bill, played by Matt Damon, is a widowed oil-rig worker living in Stillwater, Oklahoma. Between jobs and estranged from his only daughter, Bill flies to Marseilles, France, to visit her--in prison. Allison, played by Abigail Breslin, was attending college in Marseilles when her girlfriend was brutally murdered. Allison was convicted of the murder and sentenced to nine years in prison. She won't talk to Bill much at first, but he perseveres and stays there, near her. When Allison finally opens up to her father, she insists that she's innocent. Bill tries his best to plead with the lawyer to reopen her case but is unsuccessful. Allison remembers a guy named Akim hanging out with them that night, and Bill sets off on his own quest to find this mystery man, searching social media and the rough sections of Marseilles where he thinks Akim lives. Meanwhile, he has met a kind French woman named Virginie, played by Camille Cottin, and they become friends. She invites him to live in the spare room in her apartment and becomes invested in him and his daughter and his fight for her freedom. Virginie's little daughter, Maya, really likes Bill, even though she speaks no English and he no French. They teach each other, become close, and Bill becomes a part of the family, helping to care for Maya. But Bill's priority remains proving that Allison is innocent and rebuilding his relationship with her.

This movie really defied my expectations. It's a moving, powerful drama about a father's love, with the suspense and action of a mystery/thriller. In between, there are moments of humor and joy--especially in Bill's growing relationship with Virginie and Maya--and sorrow, too. Both Damon and Breslin give excellent performances, and the rest of the cast is great, too. While we see some of the darker parts of this beautiful city, the movie is an integral part of its surroundings, making use of the setting to emphasize Bill's fish-out-of-water status in France and his grim determination to stay for as long as it takes. Its characterization of Stillwater is a bit less authentic. It's depicted as a down-and-out rural area that's practically a ghost town. My husband went to Oklahoma State University in Stillwater; it's actually a thriving college town with over 20,000 students. But it made a good name for the movie! We both enjoyed this one very much.

Available on Amazon Prime and for a fee on Apple TV and other platforms.


Wednesday, January 31, 2024

Video: My First Month on the Carnivore Diet


Lots of people have been asking me about the new carnivore diet I began on January 2 (with a gradual move toward it in the two weeks before that). This has helped me to finally get chronic yeast/candida overgrowth (often a part of ME/CFS) under control, which has resulted in huge improvements for me. My immune symptoms (flu-like aches and exhaustion) cleared up and my energy has been really good for most of the past month (with a few rundown days this past week but today was better).

As I explain in the video, I am not a medical professional and am not recommending other people do this. I'm just trying to share my experiences and what I've learned so far, so you and your doctor can make informed decisions, based on your own medical needs.

In this video, I explain what a carnivore diet is & why I'm trying it, why it's supposed to be helpful for those with immune disorders, what we eat, and my results so far (spoiler: great!), with explanation of alternatives like Paleo & Keto. You can watch the video on YouTube or here:



If you watch it here, I will include the list of notes & links (that I mention in the video) that are below the video on YouTube:

Chronic Illness Vlog 1-8-24: Much Better! The Diet That's Helping

A good place to start on improving diet and helping yeast overgrowth is a Paleo diet. This post explains what it is, the modified Paleo diet we were eating, and how it helped us (note that if I'd stuck to strict Paleo, without the modifications, I might not have gotten as bad as I did!).

 Beginner's Guide to Keto Diet

Effective Treatments for Yeast Overgrowth/Candida

Orthostatic Intolerance (OI) in ME/CFS, Long-COVID, Lyme, and other illnesses

OI video

Harvard Carnivore Diet Study

Article I mentioned on Anti-Candida Diet

Diagnosing and Treating Thyroid Dysfunction


Let me know if you have any questions.

Have you found any special diet that helps with your chronic illness?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Friday, January 26, 2024

Summaries of 2023 ME/CFS & Long-COVID Research and More


It's somehow the end of January already, and I'm way behind on my planned 2023 wrap-ups, so I wanted to get this one up before any more time passes. There are two excellent summaries, looking back at 2023 for ME/CFS and Long-COVID patients, that I want to share with you.

2023: Looking Back on Back on a Year of ME/CFS Research

This post, written by the blog ME/CFS Skeptic: a Critical View into ME/CFS Research, provides an easy-to-understand, patient-centered summary of about 15 different ME/CFS and long-COVID research studies that the authors deemed "most interesting." They've already done the work of explaining each study in simple terms, so you can just scroll through their summary. Some interesting things I noted while reading it:

  • Some aspects of ME/CFS that have long been accepted--like low NK cell function--were not confirmed by the studies cited here. I suspect that is mostly due to differences between patients, how we are all so different, as well as some studies focusing on small groups and differences between short-timers and those who've been ill for much longer.
  • Virus studies failed to find any specific viruses causing ME/CFS and concluded that we likely have dysfunctional immune responses ... which we already know! But it's good that researchers are beginning to zero in on that.
  • New population studies seemed interesting at first but were definitely flawed. One relied on asking people if they'd been diagnosed with ME/CFS by a medical professional--we all know how rarely that happens! Some were surprised the number seemed so much higher than before COVID, but I suspect it is actually much higher.
  • Good news that researchers continue to dig into genetics and the gut. Now, I'd like to see more research focused on immune dysfunction!


Looking Back at 2023 in ME/CFS, Long-COVID, and FM - the Most, Best, Cleverest, and Strangest

As usual, Cort Johnson of the Health Rising website (highly recommended!) has pulled together a lot of complex information into a very easy-to-read, even entertaining format, with all kinds of creative "best of" and "worst of" categories. While some reference the same studies as the above summary, there is a lot here that is new. Some highlights:

  • Encouraging findings in the field of mitochondrial dysfunction.
  • Lots of interesting findings in the growing field of long-COVID research, including high serotonin levels.
  • Call-backs to research from decades ago that noted that clotting could be a factor in the blood of ME/CFS patients (I remember these studies and took them to my doctor), now in the forefront again, thanks to the study of micro-clotting in long-COVID.
  • New funding for "long Lyme" (previously called chronic Lyme), which is long overdue.
  • New "long cold" research on another coronavirus that causes colds and can lead to ME/CFS. The more researchers expand this concept of "long" infections (i.e. post-infection ME/CFS), the more it will help all of us.
  • Plus, a new study on lasting illness after the COVID vaccines. I experienced this, as did many others, and patients have long reported that vaccines can trigger ME/CFS--another step forward in awareness among the medical profession!
  • New clinical trials for treatments.
  • The Mayo Clinic's massive turn-around from the worst place to go for ME/CFS in the US to actually listening to patient advocates and updating their protocols.
  • There's a whole lot more here to peruse, all written in short, snappy (even fun) blurbs - scroll through.

 OK, time for some dinner! I hope you find all of that as interesting as I did.

As for me, my months-long severe relapse that ended 2023 has mostly stayed in 2023. I'm pleased to report that I am doing much, much better, mostly due to a new diet that finally got my yeast overgrowth under control and all the work my doctor and I did last year to normalize my thyroid function. The first few weeks of the new year, I felt better than I have in years! I'll write about it here as soon as I can. In the meantime, this Chronic Illness Vlog 1/8/24: I'm Back, Baby! The Diet That's Helping explains some of it, and I'll be posting a new video all about the diet I'm trying next week.

I hope you find all this research news as encouraging as I do!

Friday, January 19, 2024

Favorite TV Shows Watched in 2023


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.

Listed down at the bottom of this post are all of the shows that I reviewed here on my blog in 2023. 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 (note that where to find shows may have changed over the years). And check out my 2022 TV Favorites, too - they're all still available.

I only review shows I like, so anything listed here or on the TV Reviews tab is worth trying. 

 

Best of TV   

First a few superlatives--my favorite shows reviewed last year in each genre, plus some categories I made up! Links are to my reviews, including trailers and details on where to find each show (subject to change).

 

Best Drama

And Just Like That ... (HBO Max)

I never watched Sex and the City but enjoyed this reboot about women in their 50's (a rarity on TV!) 


 

Best Dramedy (both comedy and drama)

Somebody Somewhere (HBO Max)

My husband and I loved this warm, funny, wonderfully written show.



Best Crime/Mystery/Thriller

Will Trent (ABC)

 Our new favorite crime show, with great characters and a sense of humor. Returning February 20!


Best Sci Fi 

Silo (Apple)
An excellent adaptation of the Silo book trilogy that starts with Wool, a favorite of both of us.
 



Best TV Show That Crosses Genres
 
The Diplomat (Netflix) 
One of our top shows of the entire year, this absolutely hilarious drama starring Keri Russell, about a no-nonsense woman appointed as new US ambassador to the UK when a crisis happens is also suspenseful, with political intrigue, plus the drama of a marriage breaking up.
 




Best Character on a New Show

Poker Face (Peacock)
Natasha Lyonne is fabulous as Charlie, a woman on the run, crossing America, who can tell when people are lying and solves mysteries along the way. Drama, mystery, and lots of laughs. We can't wait for season 2! 





Best Drama Musical
 
I felt this wonderful adaptation of the best-selling novel deserved a mention for its unique combination of drama plus a fabulous fictional rock band you will believe is real.
 

 


Funniest Show With a Potentially Depressing Premise
or
Best TV Role by a Movie Actor

Shrinking (Apple)
 This deserves a mention because it's about grief but is laugh-out-loud funny, starring TV star Jason Segel and the great Harrison Ford (who is surprisingly funny). Another one we are waiting for season 2!



All TV Shows Reviewed in 2023

These were all great! Good enough that I took the time to write a review. Click the links to read my short review (never any spoilers), watch the trailer, and see where they were available when I reviewed them (subject to change). I indicate below where the show originated, though most shows are now available from many services.

Drama

And Just Like That ... (HBO Max)

Daisy Jones and the Six (Amazon Prime)

 

Dramedy (both comedy and drama) 

The Diplomat (Netflix)

Shrinking (Apple)

Somebody Somewhere (HBO Max)

Togetherness (HBO Max)


Crime/Mystery/Thriller

The Company You Keep (ABC)

The Lincoln Lawyer (Netflix)

Poker Face (Peacock)

Who Is Erin Carter? (Netflix)

Will Trent (ABC)

 

Sci Fi 

Silo (Apple) 

 

What were YOUR favorite TV shows watched last year? 

Please leave a comment below.

You can also connect with me on Facebook and Twitter.