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.
Solve ME/CFS Initiative has an awesome on-going series of webinars on a wide range of topics for ME/CFS patients and their doctors, and the one scheduled for next week sounds especially good:
I'd really like to catch this one, but they are always scheduled during my nap time! Luckily, Solve ME/CFS posts videos of past webinars on this page - topics include genetics, brain inflammation, school accommodations, the disability process, and more. What a wealth of knowledge! That same link also describes upcoming webinars, so you can plan ahead.
I'll have to watch this one after it airs, but maybe you can catch it live - sign up today! It's free and sounds like it will be very informative.
Yay! It's officially fall! That means cooler weather (thank goodness), jeans and sweatshirts, beautiful foliage, and...a new TV season! Even though streaming has made new shows (and old favorites) available all year round now, my husband and I still enjoy a bunch of shows on network TV (watched On Demand, according to our schedule) as well as on streaming. This is the time of year when the networks begin to premier their new shows, being back more seasons of old favorites, and yes, the streaming services do, too.
Network Old Favorites Returning -
First, some of our old favorites on network TV that we are looking forward to this fall, in order of release date (my reviews, with trailers, are at the links):
The Resident - We really like the cast of this medical show, though in the first season, it seemed like all of the older doctors were evil...not just bad, but pure evil. They've tamped that down a bit now (only one of the attendings turned out to be truly evil), we enjoyed season 2, and we are looking forward to season 3, starting September 24 (tonight!).
New Amsterdam - Yes, another medical show! Somehow we always get hooked on them. This one just started last year, with Ryan Eggold (an actor we liked on The Blacklist) as Medical Director Dr. Max Goodman, who is battling cancer while trying to fight against the medical bureaucracy and put patients first. The entire cast is great, and it's nice to see the good guys win. It also starts tonight, September 24.
Grey's Anatomy - Why do all the medical shows start the same week?? No idea, but Grey's is, of course, the gold standard in this category. My husband says he is starting to get sick of it, but I'm not! Never. And he's a good enough sport to continue watching it with me. I still love it and look forward to it every week. It's 16th (count 'em!) season kicks also kicks off this week, on its usual night, Thursday, September 26.
The Rookie - This newcomer turned out to be one of our favorite shows last year! Nathan Fillion stars as John Nolan, the oldest rookie cop in LAPD's newest class. As always, he brings his considerable charms to this role, but what we like best is the way this action-packed, suspenseful police show also blends human stories and humor into its mix. Its second season starts next Sunday, September 29, and we will be watching it On Demand Monday!
The Blacklist - We have stuck with this show through six seasons of twists and turns, main characters' deaths, and more. This unique show has an elite FBI black ops group working with renowned (and Most Wanted) criminal Raymond Reddington, played masterfully by James Spader (he's come a long way from the pirate outfit in Fast Times at Ridgemont High). We still enjoy this fast-paced thriller, and its seventh season begins on Friday. October 4.
Madam Secretary - I think this is another one my husband is getting a little bit tired of, but he keeps watching it with me...and I still love it! Tea Leoni is fantastic as Secretary of State Elizabeth McCord, with Tim Daly by her side as her husband, religious expert, and sometime CIA employee. Each episode, Elizabeth solves some unsolvable and complex international problem with wisdom and compassion. Ahhh...if only she and Keifer Sutherland's President Tom Kirkman on Designated Survivor were our leaders in real life! A girl can dream. Its sixth season premiers on Sunday, October 6.
I will also hopefully have the time to watch This Is Us and A Million Little Things on my own...though my TV alone time is severely limited these days.
New Network Shows I Want to Try -
Bluff City Law - This new legal show on NBC premiered last night on September 23 (my husband is away, so I have to wait!). Jimmy Smits returns to the law (he starred on L.A. Law for 6 years) in this father-daughter legal practice.
All Rise - Another legal show, premiering on the same day. Seriously, what is up with the confluence of medical and legal show premiers?? Anyway, this one looks intriguing, about a newly appointed judge who wants to make a difference. I'm a bit more interested in this one than the previous one, but we'll see. Also started Monday, September 23.
Emergence - Whew. For a while, I didn't see any new sci fi or paranormal thriller on the docket for this season, but this one looks right up our alley! I can already see similarities to The Crossing and Manifest (which returns for a second season this winter). It premiers tonight, September 24.
Stumptown - The new detective show starring Cobie Smulders (of How I Met Your Mother fame) as a P.I. has been described as similar to the classic The Rockford Files. I like the lead actress and loved the trailer - action, suspense, great sense of humor, and an awesome soundtrack! It premiers Wednesday, September 25. Check out this hilarious trailer:
Evil - And one more paranormal entry for this new fall season! A logic-driven clinical psychologist teams up with a representative from the Catholic church to investigate strange cases to determine, among other things, if someone is possessed or a psychopath. Looks intriguing - could be good. It starts Thursday, September 26.
Favorites Returning to Streaming -
And, finally, we have several of our favorites returning to streaming services later this fall. Yes, I realize this is a LOT of shows - we probably won't dive back into those on streaming until the network shows go on hiatus for the holidays.
Shameless - We don't get Showtime, so we have always watched this hilarious family drama on Netflix, and season 9 just arrived on Netflix - hurray! This is our "watch during lunch on weekends" show, and it never fails to amuse us. Those crazy Gallaghers!
Goliath - OK, so this show starring Billy Bob Thornton as a disgraced, alcoholic lawyer had an excellent first season and a seriously bizarre, warped, graphically violent second season. Thornton is so good, though - as well as the rest of the cast - that we're willing to give it one more try. It returns for its third season on Amazon Prime on October 4. Tom Clancy's Jack Ryan - This adaptation about the famed character from the Tom Clancy novels stars John Krasinski (Jim on The Office) as a deskbound CIA analyst who gets dragged into field work unwillingly. The first season was excellent and very movie-like (no surprise since there have been countless Jack Ryan movies), and we are very much looking forward to its second season on Amazon Prime, which begins on November 1.
The Man in the High Castle - This alternate history about a world where the Nazis won WWII has been fascinating and twisty, with some sci fi/time travel elements added in. We're looking forward to seeing what happens in season 4, which begins on Amazon Prime on November 15.
The Marvelous Mrs. Maisal - I watched season one of this fabulous show about a wife and mother who wants to be a stand-up comic in the 1950's on my own, but my husband caught up, and we watched season two together. We are both excited for season 3 of this original, color-saturated, funny show, starting on December 6 on Amazon Prime.
(I see my streaming looks biased toward Amazon Prime, but that's just because we've been watching a bunch of Netflix shows all summer, some of which I will be reviewing here in coming weeks).
Miracle of miracles, last month, I had a few evenings all to myself!
My husband was traveling, my son was working or out with friends, and I
had a little much-needed quiet solitude. I also happened to be sick with
bronchitis at the time, which prevented me from my usual problem of
working too late into the evenings when I am alone. Instead, I indulged
in a couple of movies. My favorite from that week was Smart People, a movie with an excellent, all-star cast that was funny and well, smart.
Dennis
Quaid plays Professor Lawrence Wetherhold, a cranky, unpleasant English
professor at a local college. This guy is a real...uh...let's just say,
jerk. His wife died years ago, and he has two kids, a son named James,
played by Ashton Holmes, who's attending the same local college and a
precocious but cool-seeming daughter named Vanessa, played brilliantly
by the talented Ellen Page. Vanessa is in her senior year of high school
and clearly very smart, but she seems to have all the social graces of
her cantankerous father. When Lawrence suffers a concussion caused by an
unexplained seizure, Vanessa is annoyed to have to take time from her
tight schedule of academics and activities that look good on college
applications to go to the hospital. Sarah Jessica Parker plays Janet,
the ER doctor caring for Lawrence. Unable to drive temporarily, Lawrence
is saved (though he would argue that) by the unexpected appearance of
his adopted brother, Chuck, played amusingly by Thomas Haden Church, who
is the complete opposite of Lawrence in many ways. With a rocky start,
Lawrence and Janet begin to date. The appearance of both Janet and Chuck
into the dysfunctional family's lives shakes things up...in a good way.
Hijinks, hilarity, and - in spite of their best efforts - growth ensue.
I
really enjoyed this movie. The writing is clever, funny, and
entertaining, and the cast is outstanding. Lawrence is truly obnoxious
and unlikable at the start of the film, and Vanessa isn't much better,
though it's clear that they are both isolated and lonely. Janet - though
that relationship has its own problems - and Chuck inject some
much-needed life and laughter into their dull, solitary lives. Along the
way, there are plenty of laughs, even when things are sad. There are
some unexpected twists here, too, but ultimately, things turn out far
better than how they started - and I like that in a movie, too. It was a
very witty and entertaining 90 minutes.
I am WAY overdue for a research update here because I have been spending much of my writing time on articles and my upcoming book, Finding a New Normal: Living with Chronic Illness, which is a collection of my articles and essays (from this blog and articles I wrote for ProHealth) on emotional coping, managing daily life, and living your best life with chronic illness. I am feverishly reviewing edits from my editor now and hope to publish the book later this fall.
I've recently published two articles for ProHealth that should be of interest to my blog readers:
I've written about both of these topics here on the blog in the past (in some cases, a very long time ago!), but these articles include the latest research, lots of new information, and a list of references to scientific studies and articles at the end, which makes them great for sharing with your doctor.
Here's what else is new in the ME/CFS world:
New Clinician's Guidelines
A group of the top ME/CFS experts in the United States has been working together to come up with guidelines for other doctors for diagnosing and treating ME/CFS. You can read and print the results of their work, Diagnosing and Treating ME/CFS. It's a brief 6-pagedocument, suitable for taking to your doctor. I was at first disappointed by the final product, though I can see its purpose now. I knew this group of the best-of-the-best ME/CFS specialists was working on clinician guidelines, and I had hoped for something like Dr. Rowe's Pediatric Primer (he was on this group, too). Instead, this brief document provides some good guidelines for diagnosing ME/CFS for other doctors, but only a paragraph on treatments, with a list of some of the options but no explanation. However, a note after that paragraph does refer to both the Pediatric Primer and a Primer for Clinical Practitioners (2014) that I was completely unaware of. This is a 51-page document that DOES get into the details of many different treatment options. While this primer does not include all treatment options, it is fairly complete and would be helpful for primary care doctors or GPs who may know very little about ME/CFS. So, maybe start with the 6-page document to help your doctor with diagnosis and then offer the longer ones! 3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University
This wonderful annual symposium on ME/CFS research and science was again held at Stanford earlier this month. I missed the live-cast, and it doesn't look like they've posted the videos yet. In the meantime, you can read about the symposium, the scientists that attended, and the agenda. You can also read Reflections of the Symposium from Open Medicine Foundation's founder and CEO here. And you can watch the videos of last year's Symposium (plus a number of other informative videos) on OMF's YouTube channel. I'll post a link to the 2019 Symposium videos as soon as they are available. Solve ME/CFS Initiative Second Quarter 2019 Research Review
Solve ME/CFS, another excellent research and support organization for ME/CFS, just published its second quarter 2019 research review, which you can read at the link. There is so much exciting research going on in every aspect of ME/CFS! Between this and the Symposium, there is a lot to be hopeful about - the pace of science in this field just keeps advancing faster and faster. I received this review in the mail, and you can also sign up to receive their newsletter here (at the top of the page).
That's all for today - my husband just got home from playing golf, so I guess I need to make dinner. The good news for me personally is that I finally got rid of a nasty case of bronchitis that hung on for a month and wiped me out, so I am back to my normal baseline...which is pretty good!
Take a few minutes NOW to send an important message to your Senators, asking them to vote for a current action that would almost DOUBLE the money appropriated for ME/CFS - a much-needed increase of our meager funding. It only took me moments (and I added a brief personal statement, which is not required), so act now! The vote is later this week - let's all let our elected officials know how important this is.
Use this link for a simple form that will look up your Senators for you and quickly send them a message, with all the pertinent information included (and an option to add a personal message).
This is a chance for our voices to be heard, even from our beds and couches!
The blog has been quiet for awhile because I had a nasty bout of bronchitis that wiped me out and lasted four weeks, and...we spent last week on a camping vacation. It was the first full week of vacation we've had all year, due to illness, family crises, weather, and family funerals out of state, so we REALLY needed a break! Our camping vacations are more than just a break from normal routine, though. My husband and I both find that time spent in nature is rejuvenating and healing. It provides a sense of peace and tranquility we just can't find in the midst of our busy lives and the ever-connected modern world.
I've written here many times about the positive effects of spending time in nature - because it is a truth I keep rediscovering! I also wrote an article for ProHealth, The Restorative Power of Nature, that includes the research on the benefits (both physical and mental) of spending time in nature and how YOU can manage more time in nature, even if you are severely limited by your illness - even if you can't go outside! My article seems to have gotten missed when ProHealth redesigned their website recently, but you can read the full text at the link, in a previous blog post.
This past week, we spent almost all of our time outdoors, since we were camping, and both campgrounds we visited were mostly quiet (we did get some rowdy neighbors one night!). We stayed at Clarence Fahnestock State Park in New York's Hudson River Valley - a huge eye-opener for us! We'd never visited this beautiful region before, and we were stunned by how picturesque and undeveloped the Hudson River is (north of NYC). Our second stop was at North-South Lake in the Catskills, which is so far up into the mountains and remote that there was no cell service for miles!
Best part of camping - reading by the campfire
I find that there are two different ways to experience nature. One is in the larger sense, when you appreciate a stunning view of a natural landscape, and it stops you in your tracks. We experienced that this week both in the beauty of the Hudson River from overlooks and a pedestrian bridge and in the peace and tranquility of North-South Lake, especially at dusk and sunset, with almost perfect silence, other than sounds of nature, and heart-stopping natural beauty.
View of the Hudson River from Walkway Over the Hudson in Poughkeepsie, NY
View of the Hudson River from an overlook (West Point is downriver on the other side)
Breath-taking view of the surrounding landscape from an overlook in the Catskills (can see 4 states!)
North-South Lake at sunset - perfect peace
The other way to experience nature is in a smaller sense, up close and personal. Listening to bird song, crickets, and the wind in the trees brings instant calm and allows you to slow down and tune in to the natural world around you. When we are camping, we notice everything around us - wildlife, plants and trees, blue sky and clouds, and the star-filled sky at night. Although we notice a lot when hiking or even just sitting around our campfire, we both find that kayaking is one of the most peaceful, nature-soaked things to do. Floating out on a calm lake with nothing around but nature makes you notice the birds flying by, reflections in the water, cloud patterns above, and the flora and fauna both in the water and on the surrounding shores. It provides a perfect calm, especially at the end of the day. if you can't manage kayaking yourself (I can now, after treating OI), ask a friend or family member to take you out in a tandem (for 2) kayak, canoe, or other boat.
Floating on the lake at dusk, soaking in the peace & tranquility
First signs of fall color
Water lily and lily pads
A duck friend floating by
If you think you can't enjoy any of this...you can! First, check out my tips for Camping and Enjoying the Outdoors with ME/CFS, based on our almost two decades of continuing our outdoor time in spite of my illness (when our sons were younger, three of us had ME/CFS, but we never gave up our camping traditions). There are lots of ways to accommodate your limits so that you can enjoy time outdoors. And, you can also do what we did and work to improve your condition so that you can do even more outdoors. Here is a summary of the treatments that have been most effective for me and my sons over the years, allowing us to be more active and feel better, with fewer crashes.
And, as I explain in that ProHealth article above, even if you are so severely affected that you can not leave your home, you can still enjoy the benefits of nature. On my bad days, I lie in a zero-gravity chair out on my back deck or porch. Leave the electronics inside and just tune in to what you can see, hear, and smell around you. The physical and emotional benefits are real. Even if you can't go outdoors, studies show similar physiological benefits from looking out a window (open, if possible, so you can also listen, but through glass works, too), or...just looking at photos of nature on a screen has similar benefits! So, I hope you have enjoyed the photos I included here (click any of them to enlarge). You can also try this playlist from TED called Sounds of the Wild, a collection of talks filled with pictures and sounds of nature. This TED Talk, Nature. Beauty. Gratitude.includes gorgeous nature photography. And this TED playlist, Reconnect with Nature! provides lots of inspiration on ways to enjoy nature, along with more beautiful photographs.
We are back from our trip now, reconnected to the world (and with 500 unread e-mails waiting for me!), but this morning, I am writing this in my reclining chair out on our porch, listening to the sounds of the birds and the breeze through the surrounding trees. Give it a try - even just 10 minutes in nature (or looking at nature!) will make a difference in your life. I am newly committed to getting outdoors every day, even if it's just to my back deck.
My back deck provides close-by nature (but leave the laptop inside!)
Although I didn't remember all the details of the plot, I remembered reading The Art of Racing in the Rain
by Garth Stein about ten years ago and loving the novel. In preparation
for the movie adaptation, my husband read the novel last month, and we
invited our good friends (who had not read the book) to come with us to
see the movie version, The Art of Racing in the Rain, in the
theater a couple of weeks ago. All four of us loved the movie, and -
like the book - it made us both laugh and cry (yes, all of us!).
This
unique story is narrated by a dog named Enzo. Now, stick with me here,
because this isn't my usual kind of thing, but this is an extraordinary
dog and an extraordinary story. As Enzo, voiced by Kevin Costner,
explains early on, he believes that dogs that are ready and have learned
enough will be reincarnated as humans (he saw this on a documentary
about Mongolian beliefs), and so, his goal is to learn enough about
being human to take this important next step. As a puppy, he was adopted
by Denny, played by Milo Ventimiglio, and named Enzo (after the Italian
racer and founder of Ferrari) because Denny is a racecar driver. The
two immediately bond, and Enzo often comes to the track with him and
watches racing on TV with Denny, both televised races and recordings of
Denny's own races, as Denny imparts his wisdom about racing. Enzo's not
too sure what to think when Eve, played by Amanda Seyfried, comes along,
but soon they are a close-knit family of three - and eventually, four,
when Zoe is born. Life is idyllic for all of them for a while, until
tragedy strikes. Through it all, Enzo remains loyal and steadfast to
Denny and the rest of his family. It's no spoiler to say that Enzo does
die in the end because of course, dogs don't live as long as humans do
and also the movie begins with Enzo's imminent demise, as Enzo looks
back and tells the story of his life.
So, let's deal
with that first. When I told our friends it was a movie about a dog,
knowing they are dog lovers who own two dogs themselves, my friend
asked, "Is it sad?" I explained that, yes, there are some sad parts in
the movie but that it also has moments full of joy and plenty of laughs,
too, so they agreed to come see it with us. As I said, all four of us
loved the movie, and yes, all of us cried, but we all laughed a lot,
too. It's a story about life, with all of its ups and downs, joys and
sorrows, so it makes you feel, and what more can you ask from a
story? My husband and I thought the movie adaptation was very well-done.
He had read the book much more recently and pointed out a few minor
changes from book to movie, but overall, the movie sticks pretty closely
to not only the plot points of the book but also its emotional feel.
The all-star cast did a great job, though, of course, Enzo is the real
star of the show. This is a wonderful movie for most ages, though I
would be cautious with younger kids who might not be comfortable being
confronted with the realities of death. But for teens and adults, it's
the perfect movie for different generations to enjoy together - or
friends, as we did. Any movie that can make you soar with joy and sob
with sorrow, all in less than two hours in a darkened theater, is a
winner in my book.
The Art of Racing in the Rain
is currently playing in theaters, though probably not for much longer.
You can look up local theaters and times (go for recliner seats!) and/or
buy tickets at Fandango:
It is tentatively scheduled for release on streaming through Amazon and on DVD in November 2019. It can be pre-ordered now.
