Sunday, September 24, 2017

Weekly Inspiration: Staying Connected with Friends While Ill

Hello! I haven't been posting much here on weekends lately because I've just been too busy (and sometimes away). My extra-busy summer flowed right into an extra-busy September! Part of the problem is that I've been in physical therapy for an arm/shoulder injury, and that is taking up a LOT of my very limited energy & time each week (note that if you need PT for an injury, print these guidelines for PT for patients with ME/CFS - these have really helped my PTs to understand my limits!).

Eating crabs with two of my closest friends
So, today's inspiration is all about connecting with friends, which can be a serious challenge when you spend so much time alone at home or expend all of your energy with your family. But friendships are SO important - friends not only provide much-needed support, they can also bring a lot of joy into your life.

I wrote this article for the ProHealth website: Staying Connected with Friends While Ill. You can read the article at the link, and I will post the full text here on the blog in a month.

The article includes:
  • What to say or talk about with old friends whom you now feel you have little in common with due to your illness
  • How to stay connected to old friends
  • How to know when it's time to let go of friendships that are no longer working
  • How to make new friends, both online and in real life, whether you can get out a bit or are stuck at home
  • If you have sick kids, teens, or young adults, you can apply these same tips to help them
After 15 years of living with ME/CFS and Lyme, I've had a lot of experiences with friendships - both good and bad. Through it all, though, I've managed to stay in touch with old friends, let go of friends who couldn't deal with my illness, and make new friends who have enriched my life. And I am fortunate to have a few really amazing friends who have stuck with me through bad times and good and bring so much joy to my life.

I'd love to hear about YOUR experiences with friendship while ill. What have been your biggest challenges? Did you lose a friend because of your illness? How have you made new friends or stayed connected to old ones? Leave a comment below!

Tuesday, September 19, 2017

Fall TV We Are Looking Forward To

Yes, yes, it's back-to-school time, kids off to college, weather turning cooler (or supposed to anyway)...but fall also means the new TV season is here! Granted, it's not like in the old days, when all new shows started in fall. Now we have streaming services launching new shows constantly and even the networks introducing new shows every season, but fall is still the biggest season for the biggest shows and the biggest launches. Here's what we are looking forward to, both old and new:

Returning Favorites
We can't wait for some of our old favorite shows to return! Here's a list of the ones we are most looking forward to, along with links to my past reviews and start dates for this fall:
  • Scorpion, season 4 begins 9/25 - a fun show about a group of genius misfits helping the government - not always believable but fun, suspenseful, a good sense of humor, and even a bit of geek romance.  We've been watching it for 3 years, but I guess I haven't reviewed it yet!
  • Blacklist, season 5 starts 9/27 - we still enjoy this fast-paced thriller starring James Spader as the mysterious Red. Can't believe I haven't reviewed that one yet, either!
  • Designated Survivor, season 2 starts 9/27 - and we can't wait! We loved the first season of this political drama crossed with an action thriller starring Keifer Sutherland as a former HUD Secretary who becomes President when the rest of the country's leadership is killed in a bombing. 
  • Grey's Anatomy, season 14 (!!) starts 9/28 - yes, we still watch this long-running medical drama!
  • How To Get Away With Murder, season 4 starts 9/28 - this complicated legal thriller
    co-created by the great Shonda Rhimes always starts with some startling event and then flashes back to fill in the blanks.
  • Madam Secretary, season 4 starts 10/8 - we are huge fans of this political drama starring Tea Leoni as Secretary of State.
  • Good Behavior, season 2 starts 10/15 - we loved this new show last winter, based on a series of novels by Blake Crouch (of Wayward Pines fame) about Letty, a con woman, trying to hold onto her beloved son, who hooks up with a killer-for-hire boyfriend. Here's its IMDB page.
  • Travelers, season 2 starts 10/16 -  we watched season 1 of this time-travel show starring Eric McCormack on Netflix last year with our son and loved it!
  • Blindspot, season 3 starts 10/27 - this intriguing thriller features a
    woman found in Times Square covered in tattoos with no memory.
  • Stranger Things, season 2 starts 10/27 - we binged this 80's sci fi Netflix show with our son last year and all loved it! Can't wait to see what happens next.
Yes, yes, I am well aware that it will be a challenge to juggle all those shows! Hopefully, some of the earlier ones will be winding down for a mid-season break by the time the later ones start. And let's not forget about new shows! Here are a few coming this fall that look like they might be worth checking out...

New Shows To Try

I went through a LOT of trailers and narrowed it down to these that look like we might enjoy them:

The Good Doctor (ABC) starting 9/25 - about a young genius surgical resident who is autistic (and whose hiring is controversial)

Ten Days in the Valley (ABC) starting 10/1 - a 10-episode thriller starring Kyra Sedgwick as a TV producer whose daughter goes missing

The Crossing (ABC) starting in October - I think I am most excited about this new sci fi thriller, about a group of refugees who appear in an American town seeking asylum - from 250 years in the future!

Deception (ABC) starting in October - a new suspense thriller about an illusionist/magician working with the FBI

Wow, so many good shows to look forward to this fall!! It all starts next week...get ready for some binge-watching!

What old favorites and new TV shows are you most looking forward to this fall?

Monday, September 18, 2017

Movie Monday: Gold

A few weeks ago, my husband and I found another great recent release free on streaming and watched Gold, starring Matthew McConaughey, a drama that begins in the 80's about a gold prospector who hits it big.

McConaughey plays Kenny Wells, a prospector working for his father's mining company who thinks big. He is always looking for the next substantial find, especially after his father's death, as the business begins to die out. He's got a huge personality and is great at motivating the people he works with, getting them excited about the latest lead, as they work to convince investors to give them money. Desperate, with the company on the verge of bankruptcy, Kenny spends his last dollars and takes off to meet renowned geologist Michael Acosta (played by Edgar Ramirez), who was responsible for a big copper find. Kenny convinces Michael to partner with him to find gold in Indonesia, and Kenny's excitement and ambitions are contagious. Back home, Kenny wrangles what remains of his company to line up investors.

The two men take off into uncharted territory deep in the Indonesian jungle, where the locals have been known to pan for gold in the river for generations. In his dress pants, shirt, and shoes, Kenny stays by Michael's side through the mud and jungle as they bring a group of locals along to help search for that elusive gold that could turn into a successful mine. Failure after failure ensues, and Kenny becomes incapacitated with malaria. Will they succeed? Are Kenny's dreams and Michael's intuitions based on reality or fantasy?

Loosely based on a true story, Gold is a drama full of suspense and emotional depth. McConaughey is amazing as the enthusiastic, driven Kenny, fully inhabiting the character through his ups and downs. You will completely believe in this pot-bellied, receding hairline version of McConaughey and will feel for poor Kenny and root for him to succeed. There are plenty of unexpected twists and turns in the plot, to keep the pace and the suspense moving. My husband and I both thoroughly enjoyed this action-packed drama.

Gold is currently available on DVD and is free on Netflix streaming. It is also available for streaming on Amazon Prime, starting at $4.99 (or the DVD is available for $14.96).


Monday, September 11, 2017

Movie Monday: Captain Fantastic

We've seen a bunch of good movies this past month, but my favorite has been Captain Fantastic, the story of a very unusual family facing some difficult challenges. It is both warm and funny.

Viggo Mortensen plays Ben, a father who is bringing up his six children in a very unorthodox way in the wilds of the Pacific Northwest. He and his wife, Leslie, decided to bring up their family outside the influence of corporations and government, in their own little quirky homestead out in the woods. The kids know how to hunt, gather, and grow their own food and are in excellent physical shape, but their parents have also paid attention to their intellectual development, creating their own unique academic approach that includes a wide range of books with no conventional age limits on them. In the opening scenes, we see that the children (Bodevan, Kielyr, Vespyr, Rellian, Zaja, and Nai - thank you, IMDB!) seem healthy, well-adjusted, and very happy, despite their strange lifestyle and isolation.

Then tragedy hits, and Ben must take his family out into the wider world for the first time in many years. They pile into their converted bus - just as unique and homemade as everything else they own - and head off on their epic road trip. Besides the expected clashes between their insulated upbringing and the commercial, material world we live in today, they are also encountering their extended family for the first time in years. Their first stop to visit Ben's sister (played by Kathryn Hahn, of Transparent), her husband (played by Steve Zahn of Treme), and their two sons doesn't go well, with Ben's children's swearing and high intellect, paired with Ben's openness with them, going head to head against his sister's traditional parenting approach. The dinner table scene is both hilarious and painful.

Things get worse when they visit Leslie's parents, with Grandpa played by Frank Langella, who is especially unhappy with the children's non-traditional upbringing. Conflict ensues, with it looking for a while like there won't be a happy ending for this wonderful but unusual family.

I absolutely loved this movie, and my husband enjoyed it, too. I expected humor from the fish-out-of-water scenarios, and I wasn't disappointed. But this movie also delivers with plenty of emotional depth, moving from heartwarming to heartbreaking and back again. In addition, Ben and Leslie's unusual approach to parenting and their clashes with the outside world bring up plenty of thought-provoking issues, around education, materialism, and family. Some of the very honest discussions among the characters in the movie further delve into issues like mental health. literature, and politics.

The acting here is superb - Viggo Mortensen was nominated for loads of awards for his role but the kids are the real stars here, and the young actors do a tremendous job playing these warm and quirky kids. This movie will have you laughing one moment and tearing up the next. It was very satisfying and had unusual depth among the typical blockbusters of today. Apparently, I'm not the only one to think so, as it has a long list of award nominations, including a Best Actor Oscar nomination for Viggo Mortensen, and many film festival wins. I'm ready to watch the whole thing again right now!

Captain Fantastic is out on DVD and is currently streaming free on Amazon Prime (link below).

Warning: the movie trailer below gives away more of the plot than I did in my review (but it is from the films' creators, so it's what they intended). If you prefer to watch movies cold, then you might want to skip it...but I included it because it shows the warmth, humor, and humanity of the film.


Saturday, September 09, 2017

Eating Paleo for Immune Disorders: Our Approach

Our Weekly CSA Haul: Paleo Means Lots of Veggies!
I've been promising this post for a long time, as readers frequently ask about our diet. As background, my son and I (we both have ME/CFS and Lyme disease, plus he has two other tick infections) work with a Registered Dietician who also has an MS in Biochemistry. In short, she is brilliant and understands how all of our complicated health problems fit together and affect us and how diet fits into the puzzle. In addition to ME/CFS and tick infections, we both struggle with chronic yeast overgrowth (aka candida), due in part to long-term antibiotics and in part to the immune dysfunction of ME/CFS. To be clear, my intent with this post is to share what we have learned from our dietician and additional research about how diet affects us and our medical problems and how we eat to try to address some of those problems. Our approach is not necessarily right for everyone (for instance, I know some patients with a sensitivity to FODMAPs, which requires a slightly different diet).

I would call our diet a modified Paleo diet. It is also meant to help reduce inflammation (which research shows is a huge factor in ME/CFS) and is an anti-candida diet, for getting yeast overgrowth under control. The Paleo diet has gotten a lot of press and plenty of patient testimonies for being the best diet for those with immune disorders, like ME/CFS. This article summarizes some of the recent buzz about eating Paleo for autoimmune disease (note that the immune dysfunction in ME/CFS is not precisely autoimmune, but it is an immune disorder).

What Is the Paleo Diet?
You may have heard of the Paleo diet before - it has been in the news for decades. Paleo is short for Paleolithic, and the basis for the diet is supposed to be what early man ate, before McDonalds, refined sugar, and other health hazards came along. Many people think that Paleo is a high-protein, meat-based diet, but that isn't really accurate. I wouldn't even call Paleo low-carb: rather, it is substituting healthy, high-quality, low-inflammation carbs (i.e fruits and vegetables) for less healthy ones like starches, refined grains, and sugars.

What is Paleo then? Basically, the Paleo diet means:
  • No dairy
  • No grains
  • No refined sugars
  • No legumes
  • No refined oils 
  • No soy
  • No alcohol
So what do you eat on a Paleo diet?
  • Lots of vegetables
  • Some fruit
  • Lean meat (preferably grass-fed) and poultry
  • Fish and seafood
  • Eggs
  • Nuts & Seeds
  • Plenty of healthy fats, like coconut, olive oil, fish oil, and avocado
When I began eating Paleo, I really did not start eating more meat/protein than before - I mostly shifted my carbs from grains to additional vegetables. So, this is not the Atkins diet!

Why Is Paleo Good for Immune Disorders, Like ME/CFS?
This kind of diet often works well for those with ME/CFS and other immune disorders for several reasons:
  • It eliminates many (though not all) common allergens, and our immune dysfunction makes us extra-susceptible to food allergies and intolerances. One study showed a full 30% of young ME/CFS patients were dairy intolerant.
  • It eliminates many (though not all) inflammatory foods. Gluten and other proteins in grains, dairy, and sugar are all highly inflammatory in the body when consumed. We already have high levels of inflammation that make our illness worse. The right diet can help to reduce inflammation.
  • It eliminates refined grains and sugars, which contribute to yeast overgrowth, a common occurrence in ME/CFS and other immune disorders.
  • Gluten, gliadin (a similar protein in oats), and casein (a protein in milk) all block one of the methylation pathways. Eliminating these can help to improve methylation, which is very important in ME/CFS. In the words of our dietician: "Dairy inhibits the uptake of cysteine by neurons which impairs the neuronal production of glutathione. Considering the brain and its neurons is the most aerobic organ and glutathione the most important antioxidant, the brain becomes subject to severe oxidative stress. Casein also blocks the reduced folate receptor and the transport of reduced folate into neurons." (I told you she was brilliant).
  • Some immune-specific Paleo diets also eliminate nightshades, like tomatoes, eggplant, and bell peppers because they are inflammatory. We haven't gone that far.

How Is Our Diet Different Than Typical Paleo?
As I said, our dietician laid out our diet plan, starting with the basics of Paleo and then adding or subtracting from there, based on our own needs which I outlined above. So, some differences between a typical Paleo diet and how we eat:
  • Almost no sugar. Regular Paleo includes small amounts of natural sugars, like honey, maple syrup, and agave. Because of our chronic yeast overgrowth, we have to limit even those (and fruits, too). I sometimes use a little bit of honey (which has an antifungal effect and doesn't encourage yeast like other sweeteners), and we often use Stevia, a natural sweetener that does not encourage yeast (and might help with Lyme disease, too).
  • Limited beans and other legumes. Though strict Paleo includes no legumes, we used to eat a LOT of beans, so our dietician said we could have them 1-2 times a week.We probably only eat them about once a week now. My poor son was so miserable with his dietary restrictions that our dietician told him he could have his peanut butter back! He's happy now.
  • Limited red potatoes. Again, strict Paleo is no potatoes, but our dietician said we could have red potatoes (less starchy than the other types) once a week.
  • I use a little butter. Ghee (clarified butter with no casein or lactose) is allowed on Paleo, but since there is almost no lactose in butter, I use it as is - sparingly.
  • Limited fruit, again due to the yeast overgrowth. Pears are fine every day - they don't encourage yeast. Apples, melon, mango, and blueberries are also good choices in limited amounts if you have yeast problems.
Note that our son was on a super-strict anti-yeast diet for his first month or two because he was in such terrible shape - his mitochondria was trashed from too many years of antibiotics (for tick infections) and he had severe yeast overgrowth. He was almost completely incapacitated and desperate to feel better. It worked and got him "unstuck" and then he gradually added things back in to get to the diet I describe here.

So, as you can see, you can make adjustments to suit your own needs. It's really not important to me whether I eat exactly like Paleolithic man or not! I am just trying to do what's best for my health, in a way that is sustainable for us.

But What Do You Eat For...?
I often have people ask me "what kind of snacks do you eat?" or "what can I eat for breakfast?" Here are some quick ideas from our own kitchen. This is by no means a complete list - just to give you some ideas to start with:

Fried Eggs with Veggie Hash for Breakfast

  • Most days I eat veggies and eggs for breakfast, in many different varieties. You can make an omelet, but I usually make a scramble just because it's easier. I saute onions and veggies then add in eggs and scramble it all together. My son likes ham or bacon (nitrate-free) with onions, zucchini, and roasted red peppers. My favorite is a combination I first had at a favorite diner: onions, zucchini, artichoke hearts, roasted red peppers, and kalamata olives (yum!). Our whole family enjoys Mexican eggs made with chorizo, onions, bell peppers, mild green chiles, and a bit of salsa with avocado on top. See? Not boring at all! With all those fiber-rich veggies, you won't even miss the toast.
  • When I'm in the mood for fried eggs (which I love), I make a veggie hash on the side, with roughly chopped onion, pepper, zucchini, and one red potato (or sometimes, turnips or sweet potatoes, in season). For a treat, my husband and I sometimes have a different version of Mexican eggs, like Huevos Rancheros, with mashed beans covered with two fried eggs and homemade salsa made with tomato, avocado, cilantro, and lime juice.
  • Paleo Waffles - when the kids are here, we bust out the waffle iron! Against All Grain (just search for waffle) has a bunch of delicious waffle recipes - we have served these to guests (even picky kids!) who never knew they were grain-free.
  • Our favorite Chocolate Banana Smoothie (recipe at the link) - this is a bit high in sugar (fruit) for me to eat often, but it's a favorite at our house.
  • I do cheat about once every two weeks and treat myself to a bowl of oatmeal, which I love. I use whole oats and make them as Paleo-ish as possible by adding coconut oil, unsweetened coconut, flax seeds, walnuts, and blueberries or raspberries. I sweeten it with stevia and flavor it with cinnamon and a teaspoon of alcohol-free vanilla.
Our Fave Paleo Smoothie with Veggie Chips

  • I often eat a deconstructed sandwich without the bread - turkey slices (or canned tuna or salmon) with lettuce, tomato, avocado, or whatever other veggies I have on hand.
  • Our favorite Chocolate Banana Smoothie - it works for breakfast, but we eat it more often for lunch. When my son comes home from college for lunch, I make a double-smoothie for us to share! I sometimes have veggie chips (like Terra brand) on the side for a bit of crunchy & salty.
  • Homemade soup - most store-bought soups contain rice or pasta or cream, but in the winter, I make a big pot of soup at the beginning of the week (some sort of meat with loads of veggies and broth) and have it for lunches.
  • Left-overs from dinner the night before. When it's just me at home for lunch, this is my usual go-to. I continue to cook for three, even though our youngest is now in college, and save the extra serving for lunch the next day.
  • Salads - the sky's the limit! Start with greens and pile on all the veggies you want, plus some protein and a vinaigrette made with olive oil. Some of my favorites include Cobb Salad (turkey, hard-boiled egg, bacon, tomatoes, cucumbers, and avocados) or Nicoise Salad (tuna, hard-boiled egg, lightly steamed green beans, tomato - I usually leave out the red potato).
Cobb Salad for Lunch or Dinner

  • We often go simple and just sub a second vegetable for the starch in a typical dinner. So, grilled (or broiled or baked or...) meat or fish with two vegetables on the side (or a cooked vegetable and a salad).
  • Dinner Salads - we do this a lot in the summer, when we have lovely fresh lettuce and veggies from our local farm. See my favorites under lunch, but we eat lots of different salads. Our favorite dinner salad is a bed of lettuce with tomato, cucumber, carmelized onions, a small bit of blue cheese (yes, a cheat but it has almost no lactose in it), and sliced steak on top.
  • Homemade soup in the fall & winter.
  • Modified recipes: I still use some of my old favorite recipes, with slight modifications. We eat stir-fries and curries, just without the rice underneath (or with cauliflower "rice" instead). I might leave out breadcrumbs or cheese or other non-Paleo ingredients and add in extra veggies. I find that sources of healthy recipes, like Cooking Light magazine or Curtis Stone's cookbooks (both favorites of mine) are often naturally Paleo or can be easily modified.
  • Find Paleo substitutes for your favorites, like cauliflower rice for rice (recipes in the Paleo cookbooks below) or zucchini noodles made with a spiralizer (see link below) instead of pasta.
  • Paleo recipes. See below for suggestions and links.
Ground Beef & Cabbage Soup for Dinner with Left-overs for Lunch


  • Nuts and seeds - lots of protein and portable, though they should be limited if you are trying to reduce inflammation or avoid oxalates. Pistachios and macadamia nuts are lowest in oxalates. Be sure to get salted nuts to help with OI!
  • KIND bars with 5g of sugar - they make several varieties now that are low in sugar. Our favorite is the Dark Chocolate Sea Salt. Still a bit too much sugar for me, but they come in handy when traveling. They are mostly made with nuts, so the same comments above apply.
  • Coconut yogurt (unsweetened) with fresh fruit. I just discovered yogurt made from coconut milk, and I was thrilled! So Delicious brand makes several unsweetened varieties. I cook with the plain and have the vanilla flavor for snacks. The downside is that it doesn't have the high protein that yogurt made from milk does.
  • Apple or pear and sunflower butter or nut butter. One of my favorite snacks this time of year especially: I cut up an apple and dip it in a tablespoon of sunflower butter - yum!
  • Jerky - there are lots of different varieties, including turkey and salmon. Trader Joe's has a great selection. Look for a brand with no nitrates and low or no sugar.
  • Veggie chips, like Terra brand, can satisfy the desire for crunchy, salty snacks (I found that Target has the best prices, though Amazon is a close second).
  • Although legumes are not strictly Paleo, I occasionally have a bit of hummus with raw veggies. 
  • A friend suggested toasted nori (seaweed) - I need to try that.
  • Extra-dark chocolate (86% cacao or higher) - yes, you can eat chocolate! Use raw cacao powder in baking and smoothies. I sometimes use unsweetened baking chocolate in recipes or to make a simple chocolate sauce (with stevia). And I eat a square of dark chocolate every night with my herbal tea - just choose 86% or higher cacao (there is less than a gram of sugar per square in it). My favorite is Ghiradelli Intense Dark 86% (link below).
My evening treat: herbal tea and extra-dark chocolate

Paleo Recipe Resources

Two of my favorite Paleo cookbooks are Everyday Paleo and Against All Grain (links are to my own reviews for details). These cookbooks include many Paleo versions of favorite foods, including breads and desserts (see my reviews for lists). I also love Everyday Paleo: Thai Cuisine and use it almost every week (but I haven't reviewed it yet). I have also found lots of recipes that are naturally Paleo or easily modified in Curtis Stone's What's for Dinner?

Two Favorite Cookbooks: One Regular and One Paleo
There are LOTS and LOTS of blogs and websites devoted to a Paleo diet with loads of recipes. One I use is Against All Grain, but there are many others, too. Whatever recipe you are looking for, just type it into your search engine with Paleo, and you will probably get lots of results.

Curtis Stone's Squash Curry - So Good!

Some of my own Paleo recipes:
My Dark Chocolate Bark
Eating this way has helped both my son and I quite a bit. It has helped us to get our yeast overgrowth under control (along with other approaches), helped to improve methylation, and reduced GI symptoms (eliminating dairy 12 years ago completely eliminated my GI problems!). Many people also find they lose weight on a Paleo diet, due to getting rid of refined carbs, flour, and most sugar and eating more vegetables.

I hope that will answer some of your questions and get you started on your own healthy eating plan. This was a long post, but I'm sure there are things I've forgotten, so please leave any questions or comments in the Comments below, and I will be happy to answer.

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.


Tuesday, September 05, 2017

TV Tuesday: The Last Tycoon

With the summer shows winding down, and the fall shows not yet starting, my husband and I were searching for something to fill in this in-between season (in addition to The Sinner, which we are still enjoying). Reluctantly, we agreed to try The Last Tycoon on Amazon Prime. I say reluctantly because neither of us usually enjoys period dramas (nope, never watched Downtown Abbey!), but the top-notch cast and rave reviews convinced us to give it a try. To our surprise, we are loving this wonderful show set in 1930's Hollywood and based on a novel by F. Scott Fitzgerald.

The great Kelsey Grammer stars as Pat Brady, head of Brady American, a smaller movie studio struggling to find a place among MGM and the other big studios. His partner and movie Golden Boy is Monroe Stahr, played by Matt Bomer (who my son and I loved in White Collar). Monroe has a magic touch with movies, instantly seeing what it would take to bring a film from mediocre to amazing. His personal life is tragic, though, as he lost his beloved wife, Minna, who was the studio's biggest star. Both Monroe and the studio have suffered from Minna's loss, and both are still trying to recover.

Pat Brady's young daughter, Celia, played by Lily Collins, is in love with Monroe and wants to be in the movie business, despite her father's admonitions to stay away from both. Monroe's luck seems to change when he meets a beautiful waitress at the local diner, Kathleen Moore, played by Dominique McElligott. Can he fall in love again? There are dozens of other plot lines winding through this entertaining show: new movies to be made, bad movies to be saved, affairs undertaken, and more, in a behind-the-scenes look at the 1930's movie industry. One plot revolves around the growing influence of the Nazis in Germany, which reaches even to Hollywood (where many of the studio employees, including Monroe, are Jewish).

Although both Grammer and Bomer are exemplary as the stars of this show, the entire (very large) cast is interesting and engaging to watch. There is a group of studio writers, struggling to do whatever Pat and Monroe tell them. One side plot involves Max Miner, played by Mark O'Brien, a young man from Oklahoma who is caring for his younger brother and sister in a Hooverville near the studio. Pat's wife, played by Rosemarie DeWitt, also plays a crucial role. And there are surprising guest stars, like Jennifer Beals playing Margo Taft, a legendary Hollywood star.

Although we are not big fans of period drama, the setting and period details here are intriguing and immersive. It's fun to see the cars, the clothing, and especially the movie sets. Amidst all the Hollywood glamour, viewers also see the business side of movie-making and the politics going on behind the scenes, plus the personal lives of all those involved.

Right from the first episode, we were surprised by how much we enjoyed this show. It is compelling and entertaining, filled with drama, humor, fun, and heartbreak. I see we only have one episode left; we will be sorry to leave this world behind. I hope there will be a season 2!

The Last Tycoon is an Amazon Prime original, so it is available only through Amazon. There are 9 episodes in the first season, and no word yet on whether there will be another season.

Friday, September 01, 2017

Good News in the ME/CFS World

Life has been super hectic lately, so I haven't had a lot of time to write blog posts, but I have been collecting little tidbits here and there to share with you. So how about some good news in the ME/CFS world for a change?

New York State Educates Its Doctors on ME/CFS
New York State's Commissioner for its Department of Health included a prominent and accurate ME/CFS summary in his monthly letter to doctors across the state. You can read the full text of the letter here. He describes ME/CFS, explains that it is a serious and debilitating disease, and outlines its symptoms, encouraging doctors to consider it as a diagnosis for patients, where relevant. Even better, he explains that Graded Exercise Therapy (GET) was previously thought to be a viable treatment but has now been debunked and may harm patients - hurray! He even provides a link to Jen Brea's powerful and informative TED Talk about ME/CFS. His only mistake was in calling ME/CFS a rare disease, though later in the letter, he says that over 1 million Americans are affected and the number is probably even higher, due to a lack of diagnostic tools. This is a HUGE step forward for New York - let's hope that other states follow its lead!

CDC Removes References to GET and CBT for ME/CFS From Its Website
Patients across the United States cheered in July when the Centers for Disease Control (CDC) finally updated their website to remove their recommendations of using Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) as "treatments" for ME/CFS. The new text describes the exercise intolerance at the heart of ME/CFS and warns that gradually increasing exercise (as GET does) can be harmful for patients. You can read a summary of the changes they made - and why - here. The CDC website still does not offer much useful advice in terms of treatment for ME/CFS, but at least it no longer recommends these dangerous therapies and explains why they can be harmful. Patient advocates would love to see further improvements to the website, but this is a big step forward that we have been asking them to make for years. Now, we need to get the UK's NHS on board to update their outdated and harmful recommendations as well!

This Blog Was Chosen as Blogger of the Week
Well, this one is more good news for me, rather than for ME/CFS generally, but the more public recognition ME/CFS gets, the more awareness builds for us! Chronic Illness Bloggers, a community of blogs dealing with a wide range of chronic illnesses, chose me as Blogger of the Week back in July. You can read my Q&A here, where I discuss our family's approach to treating and living with ME/CFS, as well as some info about the blog itself. You can also check out their Blog Directory for other blogs dealing with chronic illness (including 66 on ME/CFS and many more on Lyme and fibromyalgia).

NOTE: One of the blog posts I am overdue on is an update on the UK's PACE guidelines, recommending GET and CBT as "treatments" for ME/CFS. As mentioned here, it has been debunked, though that news has been slow to trickle down to doctors and clinics. I will try to post an update next week with all the details.

Tuesday, August 29, 2017

TV Tuesday: The Sinner

My husband and I have been enjoying a new TV show on USA Network called The Sinner, a dark & suspenseful thriller (based on a novel by the same name) with lots of unexpected twists.

Jessica Biel plays Cora, a young mom who seems perfectly normal and happy at the start of the first episode. We see Cora working in her husband's family's business and going home to her husband, Mason (played by Christopher Abbott), and their adorable little boy, Laine. If there is any tension in her life, it is maybe due to a slightly overbearing mother-in-law who lives next door. On Saturday, Cora and Mason decide to take Laine to the beach at a local lake.

At the beach, we begin to see some oddities with Cora. She swims way out into the lake, scaring her husband. But, back onshore, with her sweet son playing in the sand, things get really crazy when Cora suddenly attacks a man on the blanket in front of them, stabbing him repeatedly.The police come to the gruesome scene and arrest Cora, but she has no idea why she did what she did. She remembers attacking the man but doesn't know why she did it. She seems as horrified at her violent behavior as everyone else.

Detective Harry Ambrose, played by Bill Pullman, takes a special interest in Cora. He is intrigued by her case, and while everyone else is happy to just let her plead guilty and go to prison, he feels compelled to find out why Cora did what she did. Harry has problems of his own, including a crumbling marriage and an unusual relationship on the side, and he becomes obsessed with Cora's case and keeps digging into her background. Bit by bit, he discovers tiny clues to Cora's past that might possibly provide some explanation for her current behavior. Meanwhile, the viewers see flashback scenes of Cora's very screwed up childhood with religious fanatic parents.

We have watched the four episodes that have aired so far, and eagerly await the next one. There is plenty of suspense in this dark drama, even though you know from the start that Cora committed the crime. Detective Ambrose carries you along in his quest to uncover Cora's secrets, things that even she doesn't remember. Both Jessica Biel and Bill Pullman are excellent in their roles, giving very compelling performances as two people haunted in different ways. This dark, creepy psychological thriller has us both anxiously awaiting each new episode.

The Sinners is currently airing on USA Network. Episode 5 airs tomorrow, and there will be eight episodes in all of this "limited series." You can see all episodes On Demand, free on the USA Network's website, or on Amazon, starting at $1.99 an episode or $14.99 for the entire season....or you can read the novel!


Monday, August 28, 2017

Movie Monday: Going in Style

My husband and I have been on a movie streak lately, seeing great movies every week, so I have some catching to do with reviews. A few weeks back, we watched Going in Style, a fun, heartwarming comedy with an all-star cast.

Michael Caine, Morgan Freeman, and Alan Arkin star as life-long friends Joe, Willie, and Albert. The three men are retired and enjoying a quiet life. Willie and Albert share a house together, and Joe lives across the street with his daughter and grand-daughter. They play cards, meet at their favorite diner for coffee, and bowl together. They all worked for the same company which suddenly announces that its pension fund will no longer be funded. All three men depend on their pension checks, and Joe is even in danger of losing the house his family lives in.

While Joe is in the bank to find out why his mortgage payments keep going up, a robbery takes place. The group that pulls it off are professionals, wearing masks and waving guns but getting out with the money without anyone getting hurt. Joe gets the brilliant idea that he, Willie, and Albert should rob the bank where their pension fund resided, just to get back the amounts that were promised to them. Willie and Albert laugh him off at first, but as their funds dry up and things become more desperate, the three senior citizens get serious about pulling off a bank heist, even consulting with a local criminal for advice.

It's a silly premise, but it's not an entirely silly movie. There are plenty of laughs here (the scene of them gaining some experience by attempting to rob their local grocery store is hilarious), but there is also family drama, romance, and the warm and touching relationships between the three old friends. I would watch any of the three of these Hollywood legends in just about anything, and Caine, Freeman, and Arkin are wonderful here together. To give you an idea of their on-screen chemistry, just check out this very funny clip of their "interview" on the Today show (they spend all their time bickering and don't let Matt ask any questions!):

They mention in the interview that the final script was beefed up to add more depth than the original script had, and that is obvious. Going in Style is an entertaining and poignant movie. It's warm and funny, and the three legendary actors are a lot of fun to watch together.

Going in Style is now out on DVD. You can stream it on Amazon starting at $4.99 (link below).

Sunday, August 27, 2017

Weekly Inspiration: The Joy of Reading

Last month, I wrote an article for ProHealth website that allowed me to combine my two blogs and two interests: The Joy of Reading, with tips on enjoying books for those with ME/CFS and other chronic illnesses, including some ideas for those who have difficulty reading due to cognitive problems. The article also includes LOTS of recommendations for great books I have enjoyed, and tips on connecting with others who like to read, even if you're homebound. You can read the full article at the link or right in this post (full text is reprinted below with permission).

Reading brings a lot of joy to my everyday life. Even when things seem out of control and I am overloaded (like lately!), there is time for books built into my day. I read for an hour before bed at night, with my husband next to me (also reading), and I read for a short time before my nap to help me relax. Reading fiction can allow you to escape your present circumstances and immerse yourself in another world, while nonfiction can inform, inspire, and even provide hope and comfort.

In addition to this blog, I have also written a book blog for the past 11 years. It is called Book By Book, and you can visit it at the link. I write reviews of books I've enjoyed, as well as reviews of TV and movies. I also post photographs related to nature and travel and some food-related posts as well.

Do you like to read? Are you still able to read with ME/CFS? I hope some of the tips I've offered in the article will help you enjoy books even more (or perhaps for the first time since getting sick!) and also provide some ways to connect with other readers and book lovers to ease the isolation of living with chronic illness.

Tell me what you are reading right now! I love to talk books.

Here's the full article I wrote for ProHealth:

The Joy of Reading

Books can provide a lot of things to readers: comfort, information, inspiration, and just plain pleasure! Cognitive dysfunction (aka brain fog) makes reading difficult or impossible for some with ME/CFS, fibromyalgia, and tick-borne infections like Lyme disease, but there are some ways around that. Whether you have given up reading due to these difficulties or can still enjoy reading, there are many ways that books can bring joy into your life.

I have been an avid reader since the days of Dr. Seuss and Nancy Drew. When I got ME/CFS 15 years ago, books became a huge comfort to me, a way to escape the constant struggles in my daily life. They were one of the few joys left for me during my darkest years.

I realized that despite all of the restrictions in my life, I could still read (and I was grateful for that, knowing some can’t). I built on that love of reading with book groups, a blog about books, and online interactions with other readers. All of that is now a big part of my life and something that brings me tremendous joy.

Here are some ways that books can bring you joy and enrich your life, too:

Try Audio Books

Many people with chronic illness who can no longer read on their own find that they can still enjoy audio books. With eyes closed and reclining comfortably, you may be able to better take in information by listening rather than trying to translate written words on a page with symptoms of cognitive dysfunction. You can also enjoy audio books with a friend, partner, or family member.

Though there are still some audio books on CDs, most are now digital downloads. Simply download a book onto your iPod, phone, or other device and start listening. Try downloading audio books from sources like,, and With these services, you either purchase a monthly subscription or buy individual audio books, and many of them offer your first download(s) for free. For more free audio books, check out your library (most still offer audios on CD as well as digital downloads) or websites like, and offers two free audiobooks each week throughout the summer every year.

Here are some outstanding audio books you might enjoy:

  • Lillian Boxfish Takes a Walk by Katharine Rooney – Based on a real-life woman, this novel takes place on New Year’s Eve 1984, as 85-year old Lillian walks all over Manhattan and remembers her long life there.
  • Celine by Peter Heller – An intriguing mystery starring 69-year old Celine, a PI specializing in reuniting families, who carries her own family secrets.
  • Anne Frank Remembered: The Story of the Woman Who Helped to Hide the Frank Family by Miep Gies with Alison Leslie Gold – The narrator makes you feel as if you are hearing this riveting story first-hand in this moving memoir.
  • Rebecca by Daphne Du Maurier – This classic Gothic novel is wonderful on audio, with the narrator bringing out the creepy, mysterious vibe that makes this story so compelling. This was one of my free audio downloads from SYNC (as was Anne Frank Remembered).
Try Young Adult or Middle-Grade Books

If cognitive dysfunction prevents you from following complex narratives, then consider books written for teens/young adults (YA) or middle-grade (MG) readers. These books are often easier to follow and shorter, but many of them are just as engaging. Some to try (all of these are excellent on audio):
  • Unbecoming by Jenny Downham – YA novel with incredible emotional depth, as three generations of women (a teen girl, her mother, and her grandmother who has dementia) struggle with their identities and their relationships with each other.
  • Pax by Sara Pennypacker – MG novel about a fox raised by a boy and how he struggles to find his friend when they are separated. Warm with plenty of suspense and adventure.
  • The Big Dark by Rodman Philbrick – MG novel for those who enjoy post-apocalyptic fiction. A massive power outage affects the entire world as a young boy in New Hampshire copes with his community’s fear and anger and tries to save his mother.
  • The Deadly Sister by Eliot Schrefer – For mystery and thriller fans, this YA novel is fast-paced with plenty of surprise twists and also looks at what it means to be family.
  • Chasing Lincoln’s Killer by James L. Swanson – If you prefer nonfiction, there are often MG or YA versions of popular adult nonfiction titles, like this YA version of Swanson’s best-selling Manhunt: The 12-Day Chase for Lincoln’s Killer. Shorter and simpler than the adult book, it is still a compelling, fascinating story.
Read for Inspiration

Books can also be a great source of inspiration, especially when you are struggling with the realities of chronic illness. Here are some wonderful books to turn to for inspiration, in either print or on audio:
  • The Anatomy of Hope: How People Prevail in the Face of Illness by Dr. Jerome Groopman – This book helped me immensely in the early days of my illness. I also gave it to my father when he was diagnosed with cancer.
  • How To Live Well with Chronic Pain and Illness: A Mindful Guide by Toni Bernhard – Toni, who has ME/CFS, has written three wonderful and inspirational books that apply Buddhist principles to life with chronic illness. This mix of personal experience and common-sense advice is wonderfully supportive and helpful.
  • Always Looking Up: The Adventures of an Incurable Optimist by Michael J. Fox – I loved this uplifting memoir about Fox’s life with Parkinson’s disease, as well as life in general: marriage, kids, loss, and more. The audio is read by the author and made me both laugh out loud and tear up. His first memoir, Lucky Man, about his diagnosis and early years with Parkinson’s, is also excellent.
  • The Sound of a Wild Snail Eating by Elisabeth Tova Bailey – a memoir written by a woman bedridden with severe ME/CFS, this slim book describes her daily life and the life of a small snail in a potted plant by her bedside. Sounds a bit strange but it is beautifully written, fascinating, and inspiring.
Join a Book Group, in Person or Online

About five years into my illness, I joined my neighborhood book group. I wasn’t sure I had the stamina for it, but I loved to read and was desperate for some social interaction. I later joined another book group at a local Unitarian church. I still belong to both of those groups, and the experience has enriched my life. I have enjoyed books that I never would have chosen on my own. I also love being able to discuss a book after I read it.

If you can’t manage an in-person book club, try one online. I started my own online family book group a few years ago, with my far-flung cousins and aunts. We use a Facebook group and take turns choosing the next book. It can be challenging to keep discussion going online, but it can work with a little effort. I also belong to an ME/CFS Book Club on Facebook that is very low-key – you read the books you are able to and take part in discussions when you can.

To find a local book group, check with friends, family, neighbors, and your local libraries, bookstores, and churches. If you can’t find one, start your own! Online: try searching for ‘online book group’ (or club) and ask friends and family, as well as people with your illness that you interact with online. I have seen some book discussions within chronic illness discussion forums, as well as on Facebook and Twitter.

Use Books to Connect with Others

You don’t have to belong to a book group to connect with other people through books. Visit book blogs online and leave comments. Post on Facebook “What Are You Reading?” to engage your friends and family in discussions about books. Join Goodreads or Litsy to see what others are reading. On Twitter, use the hashtag #FridayReads to post what you are reading.

In real life, ask your friends and family what they are reading and tell them about books you’ve enjoyed. Books provide a way to connect with and relate to healthy people. Read aloud to a child in your life (even if they are old enough to read on their own) to get closer and build happy memories together – or ask them to read to you!

With all the limitations in a life of chronic illness, you can still find joy in books and in talking to others about what they are reading. If you are unable to read the books you used to enjoy, try audio books and/or books written for a younger audience. Use your love of reading to connect with others, and your life will be enriched by the books themselves and the relationships you build and strengthen.
Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.
All Amazon links include options for audio on Audible (and you can listen to a free sample):


Saturday, August 26, 2017

Video Presentations for ME/CFS Symposium at Stanford

I posted a couple of weeks ago about an exciting all-day symposium being held at Stanford University and hosted by Open Medicine Foundation: Community Symposium on the Molecular Basis of ME/CFS. The agenda was packed full of top doctors and scientists and from all accounts, it was an excellent day with some very informative and interesting presentations.

The entire day was recorded and is now available on YouTube at this link.

It's 8 hours of video, so here is an outline, with time stamps for the video, in case you want to pick and choose which parts you watch:
Introduction & Welcome: Linda Tannenbaum and Ashley Haugen (00:10)

Opening Remarks: Ron Davis: (00:14)

Morning speakers:

Robert Naviaux: The metabolism of the cell danger response, healing, and ME/CFS (00:18)
Chris Armstrong: ME, metabolism and I (00:38)
Jonas Bergquist: In search of biomarkers revealing pathophysiology in a Swedish ME/CFS patient cohort (00:53)
Maureen Hanson: Probing metabolism in ME/CFS (01:46)
Neil McGregor: Genome-wide analysis & metaboleme changes in ME/CFS (02:05)
Alan Light: Gene variants, mitochondria & autoimmunity in ME/CFS (02:21)
Panel discussion: Morning speakers (02:42)

Afternoon speakers:

Baldomero Olivers: A novel source of drugs: the biodiversity of oceans (04:37)
Mario Capecchi; The role of microglia in neuropsychiatric disorders (04:57)
Mark Davis: Is CFS/ME an autoimmune disease? (05:14)
Alain Moreau: New research strategies for decoding ME/CFS to improve diagnosis and treatment (06:06)
Wenzhong Xiao: Big data analysis of patient studies of ME/CFS (06:25)
Ron Davis: Establishing new mechanistic and diagnostic paradigms for ME/CFS (06:44)
Panel discussion: afternoon speakers (07:21)

Closing remarks: (08:03)
I need to find time to watch some of these myself! Hopefully, things will quiet down a bit now for me (and I will be able to post to the blog more regularly) with my sons back in college for the fall.

If you watch some of these presentations, please leave comments below regarding what you found interesting or enlightening and which presentations you'd recommend that others watch.

Sunday, August 20, 2017

Weekly Inspiration: Bored and Brilliant

The title of this TED Talk caught my eye in my weekly TED e-mail: How Boredom Can Lead To Your Most Brilliant Ideas. It caught my eye because I am NEVER bored anymore. I am the ultimate multi-tasker (even though I have heard the research that we are less efficient when trying to do multiple things at once), if I am not on my laptop, then I am listening to books or podcasts on my iPod, and for the past year or so, it has felt to me like I have NO free time, like every single minute is packed full.

This brief talk, by Manoush Zomorodi, is excellent - not only thought-provoking but also funny:

The interesting thing for me is that Manoush's talk focuses on how people today are so controlled by their phones...and even though I don't even own a smartphone (gasp!), everything she said is still applicable to me. Because technology does rule my life, and I never give myself quiet time to just think. In fact, everything she says here is a big part of the reason WHY I don't have a smartphone (besides the outrageous price of phones & data plans) - I know I am already too connected too much of the time, and it would certainly get worse if I had everything on my laptop on a hand-held phone that I carried with me everywhere.

The funny thing is, though, that the end result is the same. I spend much of my waking hours on my laptop. Some of that is work - writing - with all my social media windows closed and my focus 100% on what I am doing. But, much of my daily time with my laptop is spent going through e-mails (I never seem to catch up!), reading and/or posting on social media, and generally - as Manoush points out - filling every available moment with technology. During those boring tasks that can free your mind that she mentions - walking, driving, doing laundry or dishes - I almost always have an earbud in my ear, with an audiobook or podcast broadcasting directly into my mind. Don't get me wrong - I get a lot of enjoyment from audiobooks and podcasts - but I am not leaving myself any quiet time.

I suspect it is the same for many of us living with chronic illness. Even though we are often housebound, and some are bedridden, technology makes it possible to stay connected 24/7 for all but the worst off. I know of many people with chronic illness who are constantly posting on social media (I know because I am reading all those posts! And posting my own). Granted, the ability to connect with others online is hugely important to those of us who can't go out much and used to live with such loneliness and isolation...but it can get to the point where we are never bored or quiet.

I do block out tech-free time for myself every day to read and watch TV with my husband (and to nap and sleep, of course). I set a laptop limit for myself years ago and set it aside by 7:30 pm every evening (though it used to be 7 pm!), and my husband and I watch two TV shows together. I'm pretty wiped out by then anyway and need to lie down, plus we enjoy that time together to immerse ourselves in our favorite shows. We turn off the TV at 9:30 every night and go up to bed, where we spend an hour reading. That evening time is certainly a wonderful break from technology, though my mind is still fully occupied - with TV and then with my book. I don't have any moments of boredom or quiet in my days.

I do occasionally experience a complete technology break. In the talk, Manoush describes an experiment to help people spend less time on their phones. When we vacation, we take our camper and are off-line. Since I don't have a smartphone, the break is pretty complete: I will check for texts or calls on my regular cell phone from my kids or my father-in-law, but otherwise, we spend our time reading, taking walks, kayaking, and even sitting around the campfire at night just talking or watching the fire. I have to admit, I feel a little bit lost the first day or two and find myself thinking I need to post something, but that fades quickly, and I enjoy the lack of pressure and the presence of quiet time. My problem is that I need to find ways to incorporate a little quiet time into my everyday life and not just a few times a year on vacation.

What do you think? Are you constantly online or on your phone? Are you ever bored? And how about Manoush's hypothesis: do you find that you come up with creative ideas when you ARE bored?

I'd love to hear your thoughts in the comments below. I know I definitely need to make some changes!

Manoush Zomorodi has also written a book about her experiment and this concept:

Friday, August 18, 2017

Take Action Now to Restore ME/CFS Funding at CDC

CDC Headquarters in Georgia
Most Americans with ME/CFS and other chronic illnesses breathed a big sigh of relief this month when Congress' efforts to repeal the Affordable Care Act (ACA) failed, and we will - for now - hang onto our rights as those with pre-existing conditions and retain some (though not perfect) access to health insurance.

You can't breathe easy yet, though, because we now have another, familiar threat to ME/CFS in the federal government: the House Appropriations Subcommittee on Labor-HHS zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC....again. Yup, that's right, even that meager and insufficient little $5 million we get for research in the CDC (far, far below what other similar diseases get) is in danger of being yanked away completely. If this seems familiar to you, it's because this happened exactly 2 years ago, in August 2015, and ME/CFS patients and advocates spoke up and successfully got our little $5 million reinstated to the budget.

So, it is time once again for your voices to be heard! No need to run to the rooftops and shout, "We Are Here! We Are Here!" - unlike the Whos, we have the internet.

Just take a few minutes to fill out this quick form and hit send, and an e-mail letter will be sent to your Congressional reps. I just did it, and it took me 5 minutes from start to finish (and I added a fairly detailed message about our family and dozens of other families locally).

Use this link from Solve ME/CFS to send your message NOW, while we still have a chance to get this reversed.