I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
I had the honor of reading Where the Crawdads Sing by Delia Owens before the book was released, writing a review, and also interviewing the author for Shelf Awareness
(both interview and review at the link). I fell in love with the main
character, Kya, and the gorgeous natural setting in the North Carolina
marshes, so I was excited to see the story brought to life on the big
screen. On my birthday Saturday, my husband and I treated ourselves to a
morning matinee (no crowds!), our first time back in the theater in
over a year. And, this wonderful adaptation did not disappoint.
As
the movie opens, a young man named Chase, played by Harris Dickinson,
has been found dead at the bottom of a metal observation tower in the
North Carolina coastal marshes. The local police's investigation points
to murder, and they quickly zero in on one suspect, a local woman named
Kya (played by Daisy Edgar-Jones), who they immediately arrest. Kya
lives a solitary life out in the marshes by herself. She is generally
shunned by the townspeople, who call her "marsh girl," and treated
badly, so when arrested, Kya doesn't speak to the police or try to
defend herself. A retired lawyer in town, played by David Straithairn,
is sympathetic to Kya and offers his help. Kya finally opens up to him
and begins to tell him her story. When Kya was six years old, her mother
abruptly left Kya and her siblings with their abusive father, having
been beaten for the last time. As soon as they are old enough, her older
siblings leave the homestead in the marsh, until Kya is left alone with
her alcoholic father. Finally, he takes off, too, leaving Kya alone at
just ten years old. She does her best to survive on her own, living off
the land and earning some money by digging up mussels to sell to the
local general store/bait shop, owned by Jumpin', played by Sterling
Macer, Jr., and his wife, Mabel, played by Michael Hyatt, who are the
only people in town who treat Kya kindly and recognize the peril of her
situation. Kya makes a friend in Tate, played by Taylor John Smith, a
boy who was friends with her brother and who also lives in the marshes.
Eventually, as a young woman, she meets Chase. The action moves back and
forth between flashbacks to
Kya's early life and the present-day court case where she's being tried
for murder.
Like the novel, this movie is a murder mystery,
courtroom drama, family drama, coming-of-age story, and love story, all
set against the beautiful backdrop of coastal North Carolina. Nature
plays a huge role in the overall story and especially in Kya's life, as
for a long time, her only companions are the birds, insects, and other
critters who live in the marshes and swamps. She collects all kinds of
specimens, from shells to feathers and is quite talented at drawing
everything she sees around her (her mother was a painter). Kya's
coming-of-age story is beautiful and innocent, especially when
contrasted with her present-day trial for murder. There is plenty of
suspense right from the opening scenes about how Chase died and whether
Kya did kill him, as the trial continues.
We thought the casting
was excellent, including not only Edgar-Jones but all supporting roles,
too. I was glad we were able to see this movie on the big screen
(recliner theater!), as the cinematography of the natural setting is
absolutely stunning, with gorgeous views of the coastal marshes. The
film also recreates a typical southern small town in the 1950's in a
convincing way, though there's been some criticism that the Jumpin' and
Mabel characters are racially stereotyped (the "kindly Black folk"). To
my mind, they could relate to the way that Kya was being ostracized, in a
way that the white residents didn't. I thought the movie stayed pretty
close to the story in the book, though I read the novel back in 2018 (I
think that's the best way to watch an adaptation, after a little time
has passed). My husband has never read the book, but we both enjoyed the
movie very much.
[Please note that I am well aware of the
controversy now surrounding Owens, but since she herself was not under
suspicion and the accusations against her family were never resolved, I
chose to watch and enjoy the film on its own merits.]
Where the Crawdads Sing
is currently showing in theaters and was released on July 15. The movie
will eventually come to Netflix but not for about five months.
Did you miss me? For once, it wasn't my ME/CFS or Lyme that kept me from posting on my blog or making new videos!
We had to take an unexpected cross-country trip. My father-in-law passed away at 97 years old the first week of July. He had severe dementia and had lived a long life, so it was time. He wanted to be buried next to his wife, where he'd lived most of his life, in Oklahoma. So, my husband and I headed out on a long road trip. There was no way I was going to fly on a packed airplane with no one wearing masks and delays and cancellations rampant!
We drove four days to get there, staying in hotels along the way because it was much too hot to bring our camper (105 in Oklahoma!). The funeral service was lovely, with friends and family coming from near and far and lots of personal stories and memories. And then, we drove (well, my husband drove) another four days back. Other than some back pain from sitting in one position for too long, I do well on long car rides--it keeps me off my feet and forces me to do nothing! But we were both very glad to get back to our own bed and the couch and recliners!
No time for sightseeing but we passed by the Gateway Arch!
ME/CFS, GI Problems, and Dietary Changes
Since my ME/CFS first started in 2002, GI problems had not been a big issue for me. The mild digestive symptoms I did have were completely eradicated when I discovered I'd become intolerant to dairy and began avoiding it. A full 30% of those with ME/CFS are dairy intolerant, according to one study, so definitely test that out if you have any GI symptoms.
But in September 2021, for no discernible reason, I suddenly developed chronic diarrhea. With the help of both my Lyme specialist and a functional medicine specialist, things have improved in recent months, mostly thanks to loads of probiotics--very specific ones, based on stool testing to show what I had too much of and not enough of (note that the testing did not show any pathogens). But I am still reliant on very high dose probiotics and still don't have an answer as to why these problems suddenly began last fall.
Food Sensitivity Testing
Before we left, at the end of June, I received the results of Food Sensitivity Testing (from Alletess). This is IgG testing, measuring the immune response to various foods. My Lyme specialist recommended it, and I didn't expect to learn anything surprising. After all, I already knew I was intolerant to dairy, and nothing else seemed to upset my stomach.
So, what a surprise it was to look at my results and see more than a dozen food ingredients show up as mild to moderate sensitivity, including:
Moderate
Cashews
Pistachios
Sesame
Mild
Macadamia nuts
Poppy seeds
Grapes
Pineapple
Watermelon
Black-eyed peas
Chickpeas
Green peas
Peanut
Soybean
Casein
Whey
Cow's Milk (no surprise)
Egg white
Oregano
Peppermint
Rosemary
There are a few others, but these are the main ones that I eat most often. I was eating eggs every day, drinking peppermint tea every evening, and even taking capsules of oregano and rosemary every single day ... for years! We often cook Asian-style meals with plenty of soy sauce and sesame oil. I used whey powder in my daily smoothies for lunch. And guess which nuts I most often eat, as part of my mostly-Paleo diet? Yup, cashews, pistachios, macadamias, and peanuts (not a nut, I know). In fact, since I knew I couldn't have dairy, I was eating dairy substitutes like cashew milk, cashew sour cream, and cashew feta cheese (all excellent, by the way), plus eating plain cashews and cashew butter daily!
I discussed the results with my Lyme specialist while in the car on the way to Oklahoma, and she explained some things. She said eating a food constantly (like eggs, peppermint, or cashews) could make me more sensitive to it. Also, since most of my test results showed only mild sensitivity, I could probably tolerate them once in a while, if I avoided them most of the time. She said the key was lots of variety and not eating the same thing every day ... which I had been doing!
Dietary Changes
So, I took her advice and eliminated everything on my sensitivity list from my regular diet, though I do splurge once in a while. I really love my smoothies and know the whey powder is a glutathione precurser, so I have a smoothie once a week (and am searching for a protein powder with no whey, peas, chickpeas, or soy - probably won't find one!).
sigh ... no more daily Paleo smoothies!
I avoid eggs all week and use only the yolks if we have hard-boiled eggs in a salad, but I have eggs on the weekends when my husband and I have breakfast together. I struggled with how to have a high-protein breakfast with no eggs, but I am finding some combinations that work, like oatmeal made with chia seeds and walnuts or high-protein, high-fiber cereal with pecans and chia seeds (both with plenty of fresh fruit on top and almond or oat milk). I even tried a vegan egg substitute, Just Egg, that was OK. I may have that once a week as a scramble with veggies.
Much as I hate restricting my diet so much, I did have a pretty good week GI-wise, with few problems (except for today when I ate the whey powder!). And, on the plus side, most of my sensitivities are mild, and nothing at all showed up under meats & poultry, grains & starches, beverages, or vegetables (and very little under fruits and herbs/spices).
Luckily, I can still eat all veggies!
I definitely recommend this kind of food sensitivity testing because I was completely unaware of most of these (and it was inexpensive, about $150).
For my son, discovering--through testing--that he was severely gluten-intolerant was a huge factor in his recent improvements, allowing him to work full-time now! It's really been amazing what a difference eliminating gluten made for him, in all aspects of his illnesses. He was quite resistant to the idea before, since many of his favorite foods have gluten, but now that he's seen the results, he's strictly gluten-free by choice.
I also did a video update before my trip, an update on my relapse recovery, long-COVID recovery, and how I track my illness.
What We're Watching and Reading
Summer for me means Big Book Summer! This is a fun, low-key reading challenge I host every year, and this is its 10th anniversary! A Big Book is just any book with 400 or more pages, and any kind of book counts: middle-grade, audio, graphic novel, etc. And it's low-key because you set your own goals, whether that's reading one Big Book between May and September or two or setting aside a stack like I do, to choose from all summer long. It's still only July, so there's plenty of time left to sign up--all the details are at the link above.
Here's my June reading wrap-up, of the four Big Books (two in print and two on audio) I finished last month - all were very good!
My husband and I haven't been watching many movies lately, but as usual, we are enjoying a bunch of TV shows, even while on the road (the advantage of hotels over camping--WiFi!).
The Flight Attendant, based on the novel by Chris Bohjalian, on HBO is a fun, darkly humorous thriller starring Kaley Cuoco as a flight attendant whose life is a total mess. She's a party girl who drinks too much, and one night in Bangkok, she sleeps with a guy she really likes, who is dead in a bed filled with blood when she wakes up beside him the next morning! What follows is a fast-paced, deadly race to find the killer and save herself. Read my full review and watch the wonderful trailer at the link.
The other thriller (slightly less frantic) that we are enjoying is The Old Man, starring Jeff Bridges and John Lithgow. Bridges plays a former CIA agent who has been hiding out, living a quiet life for decades, when suddenly someone finds him and tries to kill him. He's prepared for this, but wasn't expecting it right now, so he goes on the run, reluctant to break ties with his adult daughter, though he knows that's how to keep her safe. This is a very twisty story, filled with old secrets, past histories, and plenty of action and suspense.
How about you? How are you doing this summer?
And what have you been reading and watching? I'm always looking for recommendations!
