TV Tuesday: Jack Ryan

When we were away for the weekend last month without access to our usual cable shows, we watched Tom Clancy's Jack Ryan on Amazon Prime on my laptop - by the time we got back home a few days later, we were hooked on this new TV series that feels like a movie.

John Krasinski (who played Jim on The Office) is the latest in a long series of actors to play Jack Ryan, a recurring character who appeared in many of Tom Clancy's thriller novels. As in the novels, Ryan is a mild-mannered analyst in the CIA, toiling away in his cubicle and analyzing various events and activities overseas. In the first episode of this new series, Ryan picks up on a pattern of communications and money transfers among suspected terrorists in the Middle East. It takes him a while to convince the higher-ups that the threat is real, but eventually he gets through to his new boss, James Greer (played by Wendell Pierce, a favorite of ours from Treme and The Wire), who has made some mistakes in his career and is supposed to be laying low in his new position. The two are sent overseas, where Ryan suddenly finds himself in the middle of the violence of the terrorists instead of behind a desk. The complex plot and the tension build, as the CIA tries to close in on a new terrorist leader, chasing him and his men all over Europe and the Middle East.

If you liked any of the previous movies based on Clancy novels and featuring Jack Ryan, then you will love this new series because it really has the feel of a movie. It is action-packed and fast-paced, with lots of suspense and a twisty plot. There is also a romance angle, as Ryan begins dating someone new but must keep his real job - and his increasingly dangerous assignments - secret from her. We thought Krasinski did a great job in the role. Obviously, with a thriller plot about terrorists, there is plenty of violence here, some of it graphic, with ample gunfire and explosions, but the show is filled with excitement and tension that keeps you watching (and perhaps even binging) to see what happens next. We enjoyed it very much.

The first 8-episode season is available exclusively on Amazon Prime, and a second season is in the works for 2019 - we'll definitely be watching it!

Movie Monday: A Simple Favor

When our camping trip got rained out last week, we came back home and enjoyed two more days of "staycation." With heavy rain on Thursday, we decided to indulge in a morning matinee in our local recliner theater. We went to see A Simple Favor, which turned out to be a fun and twisty thriller with a great sense of humor.

Anna Kendrick plays Stephanie, a single mom who is perfectly put-together and has her own "mommy vlog." The other parents at school get a little annoyed by her perky super-volunteer persona, but one mom takes an interest in her: Emily, played by Blake Lively. Emily is just the opposite of Stephanie - a high-powered career woman who dresses in tailored menswear (sometimes sans shirt!), super-expensive shoes, and exudes a cool confidence. Since their sons are best friends, Emily and Stephanie start to hang out together, sharing potent martinis at Emily's gorgeous showplace home in the afternoons while the kids play and sharing secrets, too. One day, Emily asks Stephanie to pick her son up from school, since she is tied up at work and her husband is overseas. No problem...except that Emily doesn't come to pick her son up that night - or the next day - or the day after that. Finally, her husband Sean, played by Henry Golding, returns home and he and Stephanie decide to call the police, even though Sean says Emily has disappeared before. What follows is a twisty mystery filled with surprises, as the police, Sean, and Stephanie all try to find Emily and uncover her secrets.

This movie is a whole lot of fun! Although it is a thriller, with a bit of violence and plenty of darkness, it is also very, very funny, frequently making the audience laugh out loud, even sometimes at inappropriate moments. The cast is all excellent, especially Kendrick and Lively, who both play their roles beautifully and each undergo some changes during the story. I've already mentioned the film is full of surprises, but there are SO many twists in this movie! Every time you think you've got it figured it out, something unexpected happens to turn all your previous assumptions on their head. We really enjoyed this original, fun movie that should appeal to almost every viewer.

A Simple Favor is now playing at theaters near you - check local listings at the link:
Guarantee the Perfect Movie Night with Fandango

It is due for release on DVD and streaming in December 2018.

(NOTE: Another fun movie with a similar tone that combines thriller and humor is Game Night).

Weekly Inspiration: Get Out! Nature Improves Health

My husband and I enjoyed a few days last week camping in a beautiful state park with our pop-up camper. It's been a rough year for camping due to the awful weather and frequent storms (we cancelled 3 trips and had to cut this one short!), but just spending a few days outdoors was - as always - incredibly relaxing and rejuvenating. Just being outside, looking at the trees, and breathing in the fresh air provides instant peace. As a bonus, we visited two beautiful lakes (one just steps from our campsite). I find water outdoors especially tranquil and restorative. You can see some photos from our trip to these beautiful state parks in my Saturday Snapshot post at my book blog.

This earlier blog post, Camping and Enjoying the Outdoors with ME/CFS, explains how we manage our camping trips and time outdoors, with lots and lots of tips on how you can get out and enjoy nature, too. Even just looking out a window or lying outside in a reclining chair provides huge benefits. 

It's not just me. Many scientific studies have proven that nature and the outdoors are not only emotionally restorative but actually have positive effects on your physical health, too. My article, The Restorative Power of Nature, published on the ProHealth website last November, explains what science has discovered and how it can help us, with lots of tips on how YOU can reap those benefits, too, even if you are housebound or bedridden. The full text of the article is below (the link to the article on ProHealth is currently unavailable as they update their site):

The Restorative Power of Nature

Scientific studies have found that time spent in nature - even as little as 5 minutes - reduces stress, improves creativity, reduces self-criticism, and increases kindness (1,2). Spending time outdoors also has measurable physical effects, including reduced inflammation, improved mental clarity & memory, reduced stress response, and even improved immune function, as measured by Natural Killer cell function, with quantifiable improvements lasting 30 days or more after time spent in nature (3,4,5). These are all very real physical improvements that everyone with ME/CFS, fibromyalgia, or Lyme disease certainly needs.

Aside from scientific research, I know from my own experience that spending time outdoors feels rejuvenating, peaceful, and centering. Before ME/CFS, I loved outdoor activities, including long hikes, canoeing, camping, and even backpacking. Much of that is beyond my limits now, but my husband and I still enjoy camping - at our own slow pace - and various treatments for ME/CFS have allowed me to manage short hikes and kayaking. Spending time outdoors is still among my favorite things to do.

Even when I can’t be active, though, I have a goal to spend at least ten minutes each day outside. I lie in my reclining chair on our back deck, look up at the sky, listen to the birds, and instantly feel more relaxed. Even that small amount of time in nature, that close to my house, makes me feel better.

Here are some ideas so that you too can experience the restorative effects of nature, even if you are mostly homebound.

Just a Few Minutes Outdoors Helps

Some research studies show positive physical and mental changes in people after just 5 minutes (2) outdoors, so it doesn’t take much to make a difference! Try lying in a reclining chair or hammock in your yard/garden, patio, or deck. Just that simple change of scenery from your normal bed or couch to being outdoors can make you feel better and help you to tune into nature.

Leave the Devices Inside

Although I admit I do sometimes bring my laptop outside to write, you'll get the most benefit from leaving the phone, tablet, laptop, etc. inside. I usually don't even play music when I am out on our deck because it drowns out the sounds of nature. Bring a book out with you or just grab your pillow and blanket and relax!

Immerse Yourself in Nature

With the electronic devices left inside, you can now concentrate fully on nature. You may be surprised at how much you can experience of the natural world just from lying outside your home for a few minutes. Listen for the sound of birds and the wind blowing through the leaves of the trees. Look up at the sky - watching the clouds move across the sky, observing the different cloud types and shapes each day, or noting the unique color of the sky can bring an instant sense of peace. Notice how the sky after a summer storm looks entirely different from the sky on a clear fall day.

You can also look around you at the flowers and trees, enjoying the different colors and shapes and watching as they change with the seasons. Smell the air. Breathe deeply and notice the smell of dry fall leaves or how the air smells after a spring rain. Focus yourself entirely on the natural world around you, blocking out the incessant noise of our modern life - even just a few minutes of this can reduce stress, improve your sense of well-being, and bring positive physical changes.

If you can't manage even a few minutes lying outside, then open the window near your bed or couch (or look through the glass) and try the same exercises to focus each of your senses on the outdoor world. Studies have shown that even looking at pictures of nature has positive effects (5,6).

Managing a Longer Outdoor Experience

More extensive time spent outdoors brings even more and longer-lasting  improvements (7,8). For some who are severely ill and housebound, exploring beyond your backyard might be more than you can manage. However, many with these chronic illnesses can handle a longer or more immersive experience outdoors, especially after treating aspects of the disease and incorporating effective illness management to allow you to be more active without crashing.

If you can manage a short walk, try a local park or nature center for a change of scenery from the same old walk along your street or neighborhood. If a walk is beyond your limits, ask a friend or family member to push your wheelchair along a paved path or take you on a drive through the country. Roll down the window, breathe deeply of the fresh air, and enjoy the sights and sounds of nature. After treating orthostatic intolerance and wearing a heart rate monitor, I discovered I can handle a little bit of kayaking  - since it is done sitting down, my heart rate doesn’t jump up as high as when I am walking.

For camping, you can rent, borrow, or buy a camper as your home-away-from-home. Many state parks and other campgrounds offer rental cabins or trailers, and all public parks have handicapped campsites (and many have at least one wheelchair-accessible trail, too). You also provide your own food when camping, which helps when you have a restricted diet. You don't have to go far - look for local state or county parks with campgrounds. Spending time camping in our pop-up camper and being outdoors so much makes me feel instantly relaxed and content.

When you are camping, stick to your normal routines as much as possible - for me that means an early bedtime and an afternoon nap. We also bring portable lounge chairs so I can recline around the campfire or with my book. The nice thing is that being away from home (even if it's just a local park) means I am away from all the usual household responsibilities, so I can focus all of my energy on having fun and enjoying my surroundings. I love my small daily doses of nature on my back deck, but spending a few days outdoors, immersed in nature, is truly rejuvenating.

Each of us is different, even if we suffer from the same disease, and we all have different needs, but we can each find ways to incorporate nature and the outdoors into our lives. The payoff for a little time spent outside is huge, both in terms of emotional well-being and physical health. So, go ahead…put away the device you are reading this on and indulge in some time outdoors - your mind and body will thank you!

How do YOU enjoy the outdoors?

Weekly Inspiration: Roll With the Punches

My latest article for ProHealth, Roll with the Punches, was published in late August (you can read the article at the link or below). Though I often draw from our own experiences in my chronic illness writing, this particular article came entirely from my own life.

It's been a very tough year for my family, dealing with one crisis after another, from medical emergencies to legal situations we've never dealt with before to unprecedented car repairs (including replacing brakes on four cars since spring!). All of that also led to financial crises and plenty of stress. One of the biggest challenges we faced this year was when our son was assaulted and seriously injured while on a study abroad program. It was during that particular crisis that I realize that our past 16 years of living with chronic illness had actually helped us prepare to deal with all sorts of other crises in our lives. So, this article is about what happens when the unexpected happens and how to roll with the punches and get through the crisis - all lessons learned from a life with chronic illness.

Has it been this way for you? Has chronic illness taught you some lessons on how to deal with the unexpected? Please share your own stories or tips in the comments below.

The full article is reprinted here, with permission from ProHealth:

-->

Roll with the Punches

We’ve had a tough year with a lot of unexpected crises, creating emotional stress, financial problems, and the need for fast action. Most recently, when one son was assaulted in Europe and had to return early from a study abroad program, a family member commented on how well we coped with these kinds of emergencies, how we stayed calm and did what had to be done. It made me realize that 16 years of living with chronic illness has taught us how to go with the flow when things go wrong.

I have learned to expect the unexpected while living with ME/CFS myself, plus for many years having two sons with the same disease and one of them also battling tick infections. The only thing you can count on with these illnesses is their unpredictability. I’ve lost count of the number of times I’ve had to cancel time with friends at the last minute or couldn’t go to my book club or our whole family had to cancel a trip. It’s never fun, but you do get used to the rollercoaster life.

Our sons have grown up this way, learning to roll with the punches and change plans at a moment’s notice. They’ve learned to bear the disappointment of missing out on something but also to make the best of a bad situation. When my oldest son relapsed from the flu and we had to cancel our usual Thanksgiving trip to see family, we focused instead on the rare treat of being in our own home for a holiday.

When we recently got that unexpected phone call from our son in Italy, of course my husband and I were very upset. With so much experience of crises under our belts, however, we quickly moved on to what needed to be done. I contacted our son’s concussion specialist (he’d had one before), a caring doctor who replied immediately with advice for our son and assessed him long-distance with online concussion testing software. We spoke with our son every day to assess his progress (or lack thereof), and when it became clear that he couldn’t participate in any activities, we made arrangements to bring him home early.

Back home the next day, our son kept thanking us for acting quickly and bringing him home. We got him into the concussion specialist immediately and followed the instructions for “brain rest.” Even at that point, our son was remarkably positive about his experience. Yes, a horrible thing had happened to him, and he missed two-thirds of the program he’d been looking forward to…but he told us that his first week there had been amazing, that he’d seen and done so many wonderful things and learned a lot.

Now, a month later, he is almost fully recovered. He can think clearly, has returned to normal activities, and his headaches are almost gone. His professor is working with him on an individual project to get credit for the course. And we are hoping that the travel insurance (we never travel without it!) will come through with reimbursement for us soon.

In the midst of all of this, I realized that living with chronic illness has made us emotionally stronger and taught us to adapt when things go wrong. All of those unpredictable days, weeks, and months taught us how to cope with uncertainty and crisis. Here are some tips for when the unexpected happens to you:

Take time to grieve. It’s important to acknowledge and feel the raw emotions that come up when something horrible happens. You can’t move forward until you allow yourself to grieve. It’s OK to cry and let go and feel awful for a while. In fact, it’s healthy and necessary. 

Start moving forward. Once you experience that anger and hurt and sadness, it’s time to start thinking about what you can do to help. Even in our case, thousands of miles from our son, we could contact the doctor, talk to our son frequently (he was very upset at first), and begin thinking about what came next. Taking steps to ameliorate the situation will also help you to move forward emotionally, as long as you have first dealt with the grief.

Face one day at a time. Try to think about what you can do right now, today, to help with the crisis. It’s best not to worry too much about what comes next week or next year because that can lead to ever-worsening anxiety. Instead, focus on today – or even just this minute. Taking things one step at a time will help you to stay calm and able to help.

Seek support. A few days into our crisis, I realized I really needed someone to talk to (besides my very supportive husband). I turned to my online support group of parents whose kids are sick. True, this incident had nothing to do with ME/CFS or the other chronic conditions covered in our group, and it was the recovered son who was injured, but I knew they would “get it.” And they did. I vented out all of my concerns and anxiety to our private group, and – as always – they responded with compassion and understanding. It was just what I needed. Try to find just the right source of support for your situation, whether a friend, support group, or therapist.

Unexpected crises are not just a part of life with chronic illness; horrible things happen in every life at one time or another. When these things occur, though, our lives of chronic illness have an unexpected silver lining. We’ve been training for this ever since we got sick! You can use the skills and coping mechanisms you’ve learned from your chronic illness world to help you through whatever else comes up. As an added bonus, we can also help our loved ones to find their way through whatever life throws at them. Hang on – it’s going to be a bumpy ride!

TV Tuesday: Forever

After hearing about a new Amazon Prime show called Forever on Pop Culture Happy Hour, one of my favorite podcasts, I decided to give it a try. This show with a very unusual premise grew on me, and I ended up really enjoying it.

But here's the catch - I can't actually tell you what it's main premise is without spoiling all of the twists in the first two episodes, so I will describe as much as I can and leave the rest for you to discover for yourself.

Maya Rudolph and Fred Armisen play June and Oscar, a married couple with a long and happy history who have maybe fallen into a bit of a rut. Their life has become fairly routine, though it's clear that they still love each other, as they share inside jokes and their own brand of funny banter with each other. June in particular seems to be tiring of the same old, same old. They celebrate their anniversary every year by renting the same cabin at the same lake, so this year, June suggests they do something different. It takes some convincing - Oscar really enjoys their routines and traditions - but they end up heading to a ski resort for their anniversary. Something happens there that changes their lives forever.

I really can't say more than that because some of the fun of this show is in its early surprises that set up the rest of the episodes. Despite the twists, though, this show remains a thoughtful - and funny - study of love and marriage and long-term relationships. Maya Rudolph is really at the center of the show, playing the character who is feeling most dissatisfied in the relationship, and much of what happens comes from her restlessness. Although Fred Armisen is playing a mostly serious role here, he still comes off as slightly goofy and weird, perhaps because I saw him in a few episodes of Portlandia, which is a seriously weird show. Forever explores some serious issues, but it also has plenty of moments of humor. The first few episodes seemed a bit strange to me (especially after the unexpected twists), but the more I watched, the more I was hooked. I ended up really enjoying this unusual, thought-provoking, funny show.

Forever is an Amazon Prime original show, so it can be watched exclusively on Amazon Prime streaming.

ME/CFS Community Symposium Saturday

This Saturday, September 29, 2018, the Open Medicine Foundation and Stanford University will hold their Second Annual ME/CFS Community Symposium, featuring top experts and doctors in the ME/CFS world, presenting updates on research, diagnosis, and treatment. Anyone, anywhere in the world, can join in via Livestream. Details and registration for Livestream are at the link.

The Working Group already began meeting on Wednesday - 50 top experts from all over the world discussing the latest research in ME/CFS! They will provide updates to patients and anyone else who wants to join on Saturday at the Community Symposium.

I will be away and offline this weekend - finally getting to go camping after 2 cancellations this summer! - so let me know what you hear! The entire thing will also be recorded and available on YouTube afterward (link also on the Symposium website above).

Movie Monday: Ocean's 8

During our mini vacation last weekend in the Berskshires, my husband and I watched a movie in our rental apartment one night: Ocean's 8, an all-female addition to the popular series that began with Ocean's 11 about groups of cons pulling off cool capers.

Sandra Bullock stars as Debbie Ocean, sister to renowned con man Danny Ocean, played by George Clooney in earlier Ocean movies. Debbie has just been paroled from prison, but instead of staying out of trouble, she immediately begins gathering old friends together for an impossible caper: stealing jewels from the Met Gala, the most exclusive celebrity event of the year. First, she recruits her old friend, Lou, played by Cate Blanchett. Their plan involves asking washed-up designer Rose, played by Helena Bonham Carter, to convince big-time celebrity Daphne Kluger, played by Anne Hathaway, to let her "dress her" for the ball, including wearing the most expensive necklace in Cartier's vault. They also recruit jeweler Amita, played by Mindy Kaling, computer whiz Nine Ball, played by Rihanna, talented pickpocket Constance, played by Awkwafina, and soccer mom/fencer of stolen goods Tammy, played by Sarah Paulson. Once they have their team assembled, the fun begins, with each member using her talents to bring their plan to fruition. As in all caper movies, the climax is the event itself, watching the team's plans become reality as they they create illusions, play their roles, and make the impossible happen.

Like the other Ocean's movies before it, this film is just pure fun. The twist of an all-female criminal crew adds to the entertainment, with - as always in this series - a slew of top-name actors playing the lead roles, and quite a few cameos and bit parts by equally big actors and other celebrities (some of them play themselves at the Met Gala). It's fast-paced, action-packed, and oh-so-clever, and we thoroughly enjoyed watching the plan unfold. And, as always, there are some twists in the plot that we never saw coming. All in all, it's straight-up entertainment, with plenty of suspense, laughs, and eye candy.

Ocean's 8 is currently out on DVD and streaming, available on Amazon Prime to rent starting at $4.99.



    

Weekly Inspiration: Coming of Age with Chronic Illness

Back in July, my article, Coming of Age with Chronic Illness, was published on the ProHealth website (at the link). I have reprinted its text in full below.

The article was based in part on our own experiences. Our sons both became ill with ME/CFS in late summer 2004, at ages 6 and 10. The younger one had milder ME/CFS for about 10 years and then recovered completely at 16. Our older son also got Lyme disease plus two other tick infections - which went undiagnosed for over 3 years - at age 12, so his journey has been more difficult. He is now 24 years old and just graduated from college. So, both of our sons came of age with chronic illness, though the younger one was far less affected by it.

I also reached out to an amazing community to get input for the article - our Facebook group, Parents of Kids/Teens/Young Adults with ME/CFS and Related Illnesses. They came up with some wonderful advice and tips that I incorporated into the article - I wish I had though of some of this stuff 10 years ago!

So, if you have kids who are chronically ill, this article is a must-read, with practical advice for helping them to mature and develop, even if they can't leave the house. And if you do have sick kids, you are welcome to join our support group mentioned above. It is solely for parents of sick kids (I use the term "kids" loosely - some of our members' kids are now adults but still dependent or semi-dependent). Just click the Join button for our group and then answer the questions that pop up so we can add you quickly. In the meantime, here's the article:

Coming of Age with Chronic Illness

When a child or teen becomes ill with ME/CFS, fibromyalgia, or tick infections, he or she faces many unique challenges in meeting typical growing-up milestones. My oldest son, now 23, has had ME/CFS since age 10 and three tick infections since age 12, so his illnesses have been an integral part of his coming of age. I have watched him struggle with things that come easy to his peers and fall behind in various ways, all while trying his best to live his life with these devastating conditions.

I asked the members of our Parents’ support group about the biggest challenges young people with chronic illness face as they grow and mature, and they came up with some great ideas to help overcome those challenges:

Isolation
One of the biggest challenges of chronic illness at any age, staying connected is especially important during the formative years. Sick young people are often isolated from friends and spend much of their time with their parents. Some tips for staying connected with peers:

·      Find friends online. Join groups for young people suffering with similar illnesses. Look for others on social media who share your interests. Play your favorite games online.

·      Attend school as much as possible. By law, schools must provide an equivalent education in the “least restrictive environment.” Use an educational advocate to help your young person get what he or she needs: home education plus as much time with peers as is physically possible. One teen could only manage to go to school for lunch and art class, so her accommodations plan allowed that. My son took some classes at home and went to others in person when he was able to.

·      Stay in touch with old friends. Young people can text, message, or talk to friends. My son has spent many days on the couch Snapchatting with friends! Make a standing date with close friends. One girl had to switch schools, but her best friend still came to spend time with her every Friday. We hosted movie nights for my son and his friends – low-key but lots of laughs.

·      Siblings and cousins count, too! Connecting with siblings, cousins, and other family members can help. Don’t limit cousin time just to holidays – our sons have ongoing group chats with their cousins year-round.

Keeping Up with Peers

It is painful for a sick young person to watch his or her classmates (and younger siblings) achieve normal milestones – everything from learning to drive to having a girlfriend or boyfriend – while they feel left behind. This gets even tougher as they get older and friends leave to live on their own, start full-time jobs, and get married.

·      Take time to grieve. Let your young adults grieve for what they are missing. Acknowledge their feelings rather than dismissing them.

·      Work on meeting milestones in their own way. Maybe your son will need lots of 15-minute sessions in the car with mom or dad instead of driver's ed. There are lots of options for keeping up in school, including part-time or full-time homebound instruction and online classes, plus having the school waive all but the most necessary graduation requirements. Even homebound kids can learn how to pay bills online, write checks, and other adult skills.

Having a Purpose

When you are stuck at home, it is hard to feel engaged with the world around you. Try to focus on something outside yourself and find your own unique talents that fit within your limitations. Here are some ideas from other sick young people:

·      Get a pet. Having a pet accomplishes several goals, including caring for someone else, having a purpose, and learning life skills. One girl got a puppy and is helping her parents train him as a service animal.

·      Express yourself artistically. Sick kids can focus on developing talents and expressing themselves, with music, art, or graphic design. Some chronically ill young people post their creations online or even sell them.

·      Find an online audience. One girl started her own YouTube channel at age 12 and has grown it to over 80 thousand subscribers. Take advantage of your own interests in make-up, video games, fashion, or other hobbies and find your audience through social media.

Earning Your Own Money

That first job is a big milestone, an important step toward adulthood plus the exhilarating freedom of earning your own money. There are ways for sick kids to start their own businesses, even from bed!

·      Work as mom or dad's assistant. Teach your young person how to order supplements online, refill medications, pay bills, and do online research and then pay him or her to do some of these tasks. This could lead to a real job as an Electronic Assistant, a hot new field.

·      Turn creative hobbies into cash. Help find markets online for your young person's creations, through eBay, Etsy, and other websites. Search for "turn art into products" for loads of ways to make money from personal creations.

·      Start a small business. The opportunities to make money from home are endless. You can sell products or services, create online courses, and more. Check out the podcast, website, and book Side Hustle School for hundreds of ideas and tips to get started.

·      Apply for disability. Young people who are disabled and unable to earn their own money can apply for disability. One mom said, "It’s not a lot (of money), but giving her some financial independence has been really positive. In a world where she has so little control...this is a bit."

Delayed Development

Two developmental issues to consider: emotional development that comes from interacting with others and the physical development that healthy teens experience. Both can be seriously impacted by chronic illness. Some tips to consider:

·      Socialize as much as possible. See the tips above. Both online and face-to-face socializing will help with emotional development.

·      Be patient and recognize delayed development. Try not to get annoyed when your normally compliant 20-something begins to argue and rebel – these are good signs! He or she was probably too sick as a teen to go through the normal rebellious phase, so it's coming later.

·      See a doctor. These illnesses are known to cause endocrine (i.e. hormone) dysfunction, which sometimes affects development, including moods, growth, and libido. See an endocrinologist to check for primary endocrine disorders that can be treated, like thyroid dysfunction or low growth hormone. Also watch for signs of self-hatred or body dysmorphia – not unusual when you feel like your body is betraying you – that would indicate the need for professional counseling. 

Growing up while struggling with a chronic illness is a double-whammy, but there are things that you and your kids can do to help with development and maturity. In a life that often feels out of control, taking these small steps toward adulthood can make a big difference.

TV Tuesday: Goliath

My husband and I just finished watching season 2 of Goliath, an Amazon Prime original show starring Billy Bob Thornton.

Thornton plays Billy McBride, a talented but disgraced lawyer living in L.A. He drives an old convertible, drinks way too much, and takes on small cases, nothing like what he used to do in the huge law firm that he helped start. Little by little, we find out about the case that sent Billy into a tailspin. Meanwhile, Patty, a real estate agent and part-time lawyer played by Nina Arianda, approaches him to ask his help on a case: a woman whose husband was killed in an explosion on a boat. The man's employer, a large and powerful corporation and the Goliath of the title, claims it was an accident, but his wife suspects something far more sinister. Patty convinces McBride to take the case, and against his better judgement, Billy finds himself drawn into it. Tania Raymonde plays Brittany, a prostitute who Billy has helped in the past and who sometimes serves as his legal secretary. The large corporation they are suing is represented by Billy's old firm (another Goliath), now run by Donald Cooperman, Billy's old partner played by William Hurt, who is a creepy recluse who spies on his employees and holds a grudge against Billy. Maria Bello plays Michelle McBride, Billy's ex-wife who still works for his old firm.

The plot is intricate and engaging, as each episode goes deeper and deeper into the legal case and the circumstances surrounding the man's death, providing plenty of suspense. The cast is outstanding and really pulls this show up to a higher quality than most TV shows. Billy is a screw-up in many ways, but you can't help but like him, with his crooked smile and fervent belief in justice. The rest of his team is just as likable, while William Hurt's performance as Cooperman is the perfect bad guy you love to hate (he's super creepy). Season 1 of the show follows this case through to its conclusion.

In season 2, Billy and his team are back, though I won't say much more about their circumstances to avoid spoilers of the first season. This time, Billy is drinking more than ever but is asked by his friend Oscar, played by Lou Diamond Phillips, to represent his 16-year old son, who is being held as a murder suspect. Oscar is certain his son is innocent, and Billy has known the boy for years, so he reluctantly gets pulled into the case. This time, the Goliaths and conspiracies are even bigger, involving the police, a drug cartel, and politics. This second season was far more gruesome and violent, with a couple of really warped people at the center of things. My husband and I were joking about needing to watch something more uplifting after watching Goliath this season, like an episode of Breaking Bad! It's pretty dark. I definitely preferred season 1, though season 2 still had a compelling plotline. It's really worth watching just for Billy Bob Thornton. Interestingly, though season 1 was enjoyed equally by critics and viewers, Rotten Tomatoes shows that for season 2, critics rated it an average of 86%, while regular viewers gave it only 53%.

Season 1 and Season 2 each feature 8 episodes and are available exclusively through Amazon Prime (at the links provided).

Here is the trailer for season 1, to avoid any spoilers:



    

URGENT: Tell Your Reps to Reinstate CFSAC

A week ago, the U.S. Department of Health and Human Services made a startling and unexpected announcement: the charter for the CFS Advisory Committee had expired and would not be renewed. This was news to EVERYONE, including the committee's Chairman, Dr. Faith Newton (a close friend of mine and educational specialist whose son has ME/CFS) and the rest of the committee members. CFSAC had been in place since 2002, and its charter had been renewed every two years, as required, since then.

Further investigation revealed that CFSAC was the ONLY HHS Advisory Committee shut down, and its operating costs were less than $200k per year - this was not part of some big cost-cutting move. Pushed for a reason, the next day the HHS added that "The Department feels that the committee accomplished the duties outlined in its charter." That statement is so far from true as to be laughable. All members of the committee agree that it had many open items that either hadn't even been started yet or were in process.

For more details and history on CFSAC and this sudden closure, see Jennie Spotila's blog post at Occupy M.E., Rest in Power, CFSAC. As always, Jennie has explained it all clearly and thoroughly.

What Can You Do?
So glad you asked! Solve ME/CFS has put together a quick and simple form for writing to your Congressional reps to ask them to reinstate the committee - I did it earlier this week, and it only takes a few moments.  All the pertinent information is already written for you, though you can add a brief description about your personal situation if you like.

This is such an important issue - without that committee ME/CFS patients, doctors, caregivers, and researchers have no voice in how the HHS approaches ME/CFS.

Many of us - including myself and my entire family - have participated in past CFSAC meetings and given testimony to the committee. This meeting summary from 2011 includes a photo of the teens that came to the meeting and a video of our own testimony on pediatric ME/CFS and will give you an idea of the important role this committee played.

PLEASE, act today and fill in that quick form to let your Senators and Representatives know how important CFSAC is to us.

Movie Monday: Jurassic World

We had a little movie spree a few weeks ago when we enjoyed a 3-day staycation with our sons and then the following week, our niece came to visit. I'll mention the second movie first. One night, it was just me, my 24-year old son, and my 16-year old niece, and everyone was worn out and wanted to watch a movie - but what would appeal to both of them?? They have very different movie tastes. I ended up with a movie I'd already seen this summer, but I though they'd both enjoy: Game Night, starring Jason Bateman and Rachel McAdams (you can read my review at the link). Great choice! They both loved this unique movie that combines suspense and humor, and I enjoyed it a second time, too. It's still for rent on Amazon, if you're looking for a crowd pleaser!

So, going back to our staycation, we had another tough crowd to please because our sons don't always like the same movies. So, we reached back in time and watched Jurassic World - not the new one out this summer, but the one from 2015. We'd never seen it before, and everyone agreed on it!

Set 22 years after the events in the original Jurassic Park movie, this movie takes place on the original site, where a fully-functioning theme park called Jurassic World is now in operation. They've ironed out the problems and made the park safe (they think) for all the tourists that flock there to see real dinosaurs. Bryce Dallas Howard (Ron Howard's daughter) plays Claire, who is the busy operations manager of the park. Her nephews, Zach and Gray, come to the island to visit, and get a tour of the amazing facilities. The research side of the operation has been working on a hybrid dinosaur - bigger and scarier than any other they have - called an Indominus. Meanwhile, Owen (played by Chris Pratt) has been carefully training the raptors so that they recognize him and respond to his commands. Owen evaluates the new Indominus and its enclosure and doesn't think the exhibit should be opened to the public because it's too dangerous and not secure enough. And guess what? He's right - the Indominus gets out and goes on a killing rampage, chewing up workers, tourists, and other dinosaurs indiscriminately. Zach and Gray are out in the park, so Claire and Owen go in search of them.

It's a pretty predictable plot but lots of fun to watch - giant dinosaurs terrorizing people, right? Of course, both Howard and Pratt are fun to watch, too - wait until you see Howard run from dinosaurs in her stilettos! (seriously, kick off the damn shoes when a dinosaur is chasing you!) It's what you'd expect from this franchise - loads of action, suspense, thrills, and peril. We all enjoyed it - it's just pure fun escapism, which was just right for our staycation. I was surprised to read just now that this is actually #4 in the Jurassic Park movies - I guess I missed a couple of them in the middle. And by the way, if you've never read the original novels by Michael Crichton - Jurassic Park and The Lost World - you should! They are both excellent.



You can stream Jurassic World starting at $2.99 on Amazon or watch it on DVD.

Weekly Inspiration: Who Are You, Really?

I've been thinking a lot lately about introverts vs. extroverts because I feel like chronic illness has changed me into an introvert. I've noticed lately that even though I feel better, crash less, and can do a lot more than in the early days of my illness, I still need plenty of quiet solitude. In fact, I'm working on a new article for ProHealth on this topic.

I found this TED Talk on a playlist called "For the Love of Introverts," and while the speaker, Brian Little, talks about introverts and extroverts, the talk covers a lot more than that. It's all about how to define who you are, using different kinds of criteria (introvert vs. extrovert is just one). In fact, one thing he talks about is how circumstances can change aspects of your personality...again, right along the lines of what I have been thinking about myself lately. Oh, and Brain is an excellent speaker and quite funny, too. Here's his TED Talk:

What do you think about Brian's system for defining who we are? I especially liked his last category of Idiosyncratic, to take into account our individual projects & interests and how circumstances can affect us. And, I did learn more about introverts and extroverts - watch for more on that subject as I finish my article. I'll share it with you when it's published. I think it is very important to know ourselves and understand our needs, especially when living a life defined in part by chronic illness.

Food for thought, right?

TV Tuesday: Fall TV Preview

It's September! And that means a new fall TV season is quickly approaching.

Here are some of our old favorites coming back, some new shows I'm excited to try, and a few disappointments of old shows that have been cancelled:

Old Favorites Coming Back

These are the shows we look forward to returning to in the fall, with expected start dates:

The Last Ship - 9/9/18 - We love this post-apocalyptic show starring Eric Dane (McSteamy) that has grown and evolved with each season - this year, it moves from summer to fall.

The Resident - 9/24/18 - We just started watching this new medical show last winter and although it has some flaws, we generally enjoy it (and especially its main cast members).

This Is Us - 9/25/18 - I watch this show on my own during lunchtime and love to laugh and cry with every episode! I can't wait to see what they do with season 3.

Grey's Anatomy - 9/27/18 - Season 15?? Yup, and we've watched it since season 1 and still love it! What other huge medical disasters and new couplings can they come up with?

Madam Secretary - 10/7/18 - One of the best shows on television, with an outstanding cast - suspenseful, intriguing, and even funny.

Blindspot - 10/12/18 - We've watched this fast-paced thriller for 3 seasons and are eager to see what's in store for Jane Doe next.

Favorite Shows That Got Cancelled
They're not coming back? Say it isn't so! These are worth watching the old seasons, if you haven't tried them yet:

Scorpion - Though it sometimes stretched the bounds of believeability, we enjoyed all 4 seasons of this suspenseful and funny show and will miss it in this fall's line-up.

Wisdom of the Crowd - Though it only aired 1 season, we loved this unique show about fighting crime with crowd-sourcing. Rumor is that allegations of sexual misconduct by Jeremy Piven, its star, (though he denied them) may have shut it down. I'm sorry to see it go.

Designated Survivor - My husband is going to be SO upset to hear this one isn't coming back. Though we both enjoyed this political thriller starring Keifer Sutherland, it was his favorite in the fall/winter line-up. Its 2 seasons are well worth watching.


New Shows We Plan to Check Out
I watched a lot of YouTube trailers tonight, and there are a few shows I am looking forward to trying.

Manifest - 9/24/18 - I can't wait to watch this one, about a plane full of passengers that went missing five years ago and suddenly reappears - oooh! Intriguing!



New Amsterdam - This looks pretty good, starring Ryan Eggold (Tom from Blacklist), but I don't know if we have room in our hearts (or viewing schedule) for a third TV medical drama.



A Million Little Things - A new ABC drama about a group of friends who are upset when one of their own commits suicide, along the lines of NBC's This Is Us, in terms of an ensemble drama. I will probably try this one on my own at lunchtime.



I Feel Bad - There are a whole slew of new sitcoms this season, but we don't watch too many of those (except Modern Family and Life in Pieces when our kids are home). I might try this one myself - the preview was pretty funny!



Those are the highlights for fall TV on our horizon.

What are YOU looking forward to this fall on TV?