New ProHealth Article - What Do You Say?

My latest article is up at the ProHeath website: Who Do You Tell and What Do You Say?

It's all about the challenges of talking to healthy people about your illness and the difficult decisions of who do you explain to and how do you explain such a complex - yet invisible - illness.

I would love to hear your thoughts on this topic - what do YOU say?

Young People, ME/CFS, and Limits

My own college Halloween (I'm Barnie, the short one in the middle!)

I led a healthy, active, normal life until I got ME/CFS at age 37, thirteen years ago. My oldest son, on the other hand, got ME/CFS two years after I did, when he was just 10 years old. That's a very young age to begin a life of chronic illness. He is 21 years old now, and he and I are both struggling with his limits.

After 13 years of illness, I am accustomed to this life defined by restrictions and limitations. I can't drink alcohol; can't eat diary, sugar, or yeast; can't stay up late; can't exercise the way I want to...the list goes on and on. I am resigned to this life ruled by limits because I know that if I stay within those limits - and take my medications and supplements at the right times every day - then I can function fairly well most of the time, especially for someone with ME/CFS. My son, though, struggles mightily with this life of limits.

After eleven years with ME/CFS (and the past nine with Lyme disease and two other tick infections, too), he is well aware that he feels better when he gets enough rest, sticks to a routine, and doesn't over-exert. Knowing that and doing it are two different things, though. I get frustrated when he does things that we both know put him at risk for a serious crash.

For instance, when he and his friends drove to Florida for spring break last year, he volunteered - volunteered! - to drive the middle-of-the-night shift, ignoring the fact that he needs a solid 10 hours of sleep a night to function the next day. I couldn't believe it when he told us that!

Last weekend, we were making our annual trip to the local pumpkin farm on Sunday morning for pumpkins and homemade donuts, and he wanted to join us. We planned to leave by 11 am (if you get there too late, they run out of donuts!), so he decided to spend the night at home so he could get up in time to go with us. He came home from work Saturday night but realized he'd forgotten something at his apartment at school, so he drove back there at about 11 pm. Next thing we knew, it was 3 am and we heard the garage door going down. The next morning (when he could barely drag himself out of bed and into the car), we said, "Why on earth did you stay out until 3 am?" He explained that when he stopped back at his apartment, a friend convinced him to go to a Halloween party, so he pulled together a quick costume and went!

Today, a similar story. He slept here last night because one of our cars is in the repair shop. He was wiped out and didn't get up until 1 pm today. As we were eating lunch (breakfast for him), I said, "Now, I know you have two Halloween parties to go to - one tonight and one tomorrow - so pace yourself, OK?" He grinned sheepishly and admitted there were actually seven Halloween parties going on this weekend! I advised him to just choose the ones that were most important to him, and he just said, "We'll see." Yeah, right, I know how this goes!

As a mother who has watched him suffer from this illness for eleven years, this drives me crazy!!

On the other hand, if I think about it for a moment, I really can't blame him. He is 21 years old and in college! When I was his age....well, let's just say I was more than a bit wild. I was a regular party girl and quite reckless. I can't imagine - in my wildest dreams - being that age and having to live within all these restrictions and limits. Unthinkable.

His is a time of life that is all about freedom, fun, and independence. A time when you have few real responsibilities, and life is all about friends, parties, and having a good time (oh, yeah, and school, too). It hurts my heart to think that he can't just be wild and free like I was, that he can't just do whatever he wants and make the most of his fleeting freedom.

So, although I worry about him constantly and often wish he'd be more careful, another part of me is rooting him on, thrilled that he is well enough (relatively speaking) to be able to go to college and live on his own and spend time with his friends. I remember all too well those dark days when he was in high school and mostly confined to the couch, missing 90 days of school his senior year. I want him to enjoy this time of life and go to the parties and laugh with his friends and stay up until 3 am...I just wish all that didn't involve such a big risk for him.

I will continue to worry about him, I'm sure, but I am also proud of him for making the best of things, for managing to have fun in spite of all his restrictions and limits, for trying his best to live a "normal" life. In truth, his life is far from normal (though that is hard for others to understand) - he eats a restricted diet (some of the time!), is on a strict regiment of medications and supplements that allow him to keep living his life, and does indeed crash if he does too much - but he is making the best of it and living his life as best he can. Although I may get frustrated with him at times, he is actually my hero.

I would love to hear from other young people (and parents, too!) - how do you find a balance between the limits inherent in this illness and living your life? How do you cope with so many restrictions at a time of life usually defined by freedom?

Big News: NIH Gets Behind Serious ME/CFS Research

In a stunning announcement today, the U.S.'s National Institutes of Health (NIH) announced that they would be taking some specific actions to improve and increase research into ME/CFS. This is a big deal since NIH has mostly ignored our disease for decades and not taken it very seriously. This announcement indicates a big change of direction for them. You can read NIH's full press release here.


The announcement states that NIH's new actions to bolster ME/CFS research are the direct result of the recent IOM report and Pathways to Prevention (P2P) report.

Here is a direct quote from NIH Director Francis H. Collins, M.D. PhD.:

“Of the many mysterious human illnesses that science has yet to unravel, ME/CFS has proven to be one of the most challenging. I am hopeful that renewed research focus will lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.”

Wow, right? They have finally noticed our plight!

One specific action will be to start a clinical study of ME/CFS patients which will involve multiple NIH groups. The study's purpose will be "to explore the clinical and biological characteristics of ME/CFS following a probable infection to improve understanding of the disease’s cause and progression." Awesome.

Another action will be to set up a trans-NIH working group involving multiple NIH centers, in recognition of the fact that ME/CFS s a complex disease that affects multiple body systems. "One goal of the group will be to explore how new technologies might shed light on what causes ME/CFS. The Working Group includes representation from 23 NIH institutes, centers and offices."

Did I say WOW yet?? This is all a stunning move forward after decades of being ignored by the U.S.'s governmental health agency. When combined with the efforts of private research - which are moving forward rapidly and making new discoveries every day - this would seem to usher in a new era in ME/CFS research...and new hope for the millions of people affected by this debilitating disease.

TV Tuesday: Quantico

One of our favorite new TV shows this season is Quantico, with an excellent ensemble cast and plenty of compelling suspense.

As the show opens in episode one, a group of new FBI recruits is making their way to Quantico, FBI headquarters, to start their training as agents. We get introduced to the main characters one by one, as they travel to Virginia and get settled into the dorms. There's Alex, played by Priyanka Chopra, a young woman of Indian descent who seems to be outgoing and fearless. Ryan, played by Jake McLaughlin, is ex-military and seems attracted to Alex. And so it goes, with the audience learning just a bit about each recruit at first. Josh Hopkins plays Special Agent Liam O'Connor who is in assisting with the recruits, and his boss, Miranda Shaw, played by Aunjanue Ellis, is in charge of the training program.

Then the show flashes forward to the present day, three years after that first day of training, when a terrorist has bombed Grand Central Station. Alex is rescued from the rubble and thinks that her old bosses, Liam and Miranda, are questioning her as a victim, but she soon learns that she is their prime suspect. When they search her apartment and find plans for the bombing and equipment for making the bombs, their suspicions are confirmed. Alex, though, claims she is innocent and manages to escape from custody.

She soon learns that whoever set her up must have been planning this since their first days at Quantico together. From there, the show goes back and forth in time, showing Alex on the run, visiting various Quantico classmates and trying to figure out who the real bomber is so she can clear her name and then flashing back to their training at Quantico. So, the audience gets to come along in recalling all that happened in their training and examining each of the recruits to try to figure out who the traitor and terrorist was. It's fast-paced, full of suspense, and very, very compelling. The characters are intriguing and complex. We watch all of our shows On Demand, and this is one of the first ones we rush to see the day after it airs. I can't wait to watch it tonight!

Five episodes of Quantico have aired so far, and they are all still available On Demand or at the ABC website. I think the show is also available on Netflix and Hulu, and episodes are $1.99 on Amazon Prime.

What are your favorite new shows this season?

Movie Monday 10/26: Take Me Home

Last week while my husband was out golfing, I watched Take Me Home, an uplifting road trip movie that I really enjoyed (free on Amazon prime).

Thom, played by Sam Jaeger (who played Joel on my favorite TV show, Parenthood), is a struggling artist in NYC, a photographer who can't find a job in his field. Thrown out of his apartment and desperate, Thom turns to running an illegal cab just to stay afloat. Meanwhile, across town, Claire finds her husband in what seems to be a compromising position with an associate on the same day that she hears her long-estranged father had a heart attack. On a whim, Claire jumps in Thom's cab and just tells him to drive, anywhere. Over the next 24 hours, the two decide to drive all the way to California to see Claire's father - well, Claire decides and Thom goes along because he needs the money.

Their road trip is difficult every step of the way, with Thom hiding all sorts of secrets (like his real name and the fact that it isn't even a legitimate cab), and Claire hiding secrets of her own while she struggles internally with both her relationship with her husband and with her father. They stop in Las Vegas to see Claire's mom and eventually make it to California, with more than a few rough spots along the way! And, of course, as the trip continues, they gradually get to know each better.

I was in the mood for a romantic comedy, so this fit the bill, and I'm a sucker for a road trip movie. We used to take a 3-week road trip cross-country every summer and didn't get much of a vacation this year, so I was drooling over the travel scenes! All in all, it's a fun movie about struggling with your personal demons and figuring out what you want out of life. I enjoyed it.

NOTE: I just discovered - thanks to IMDB, that amazing store of entertainment information! - that Claire was played by Amber Jaeger, who is married to Sam Jaeger, who not only stars in this movie but also wrote it and directed it. Cool.

Have you seen any good movies lately? What's your favorite road trip movie?

ProHealth Now Covers Lyme Disease, Too

I was excited to see ProHealth's announcement that they now have a section devoted to Lyme disease, in addition to their excellent coverage on ME/CFS and Fibromyalgia.


The ProHealth website has long been one of my favorite sources for information on the latest research, treatments, and other information related to ME/CFS, and I recently began writing for their Inspiration Corner (in the lower right-hand corner at this link).

Since Lyme disease is a known trigger for ME/CFS and many patients with ME/CFS and/or Fibromyalgia discover that they have Lyme or other common tick infections (either in addition to or instead of their original diagnoses), this is very useful information for ME/CFS and Fibro patients.

Like many people with ME/CFS, we have a long history with Lyme disease as well. I have had Lyme twice (post-ME/CFS diagnosis) and thankfully, gotten rid of it both times. Our 21-year old son has a more complicated - but not uncommon - history. He had ME/CFS starting in 2004, got Lyme disease in 2007, was treated with just one month of antibiotics, and got sicker and sicker over the next five years. Finally, we figured out that tick infections were the cause of his ever-worsening condition - he had two other tick infections (babesia and bartonella) in addition to the Lyme, and they had never been diagnosed or treated (and you can not get rid of Lyme completely without also treating these so-called co-infections). He is now 5 years into his treatment for tick-borne infections and is much improved - attending college and living on his own - though he still has a long way to go.

If you have ME/CFS or FM and have not yet been evaluated by a Lyme specialist (the blood tests are not reliable and can not be used to rule out Lyme disease) for tick infections, you should - here's why and how.

So, this is the perfect addition for the already excellent ProHealth website!

TV Tuesday 10/20: Blindspot

Now that we're a few weeks into the new fall TV season, I thought I'd start focusing on some of the newer shows we've tried. As I've mentioned here before, my husband and I usually watch two TV shows together each evening - that's our together time, and there are lots of shows we enjoy together. Our 21-year old son lives at college (about 20 min away), but each season, there are a couple of TV shows that he wants us to save and watch with him when he comes home on Sundays. One of those is the new NBC thriller, Blindspot.

Blindspot has a unique central plot: the first episode opens with a woman found in Times Square, naked and with no memory...and covered head to toe in mysterious tattoos. The FBI brings the Jane Doe, played by Jaimie Alexander (she was in both Thor movies), back to their field office and lab. One of her tattoos - placed prominently on her back - is the name of an FBI agent, so they call him in. Agent Kurt Weller, played by Sullivan Stapleton, doesn't recognize the woman, but he is intrigued by the mystery and especially why he was specifically called out.

From then on, the FBI agents, led by Weller, investigate her tattoos one at a time, aided by Agent Patterson in the lab, played by Ashley Johnson (whom I recognized from her roles as a child in Growing Pains and Phenom). For instance, they notice a date hidden in one of the tattoos that is that very day, so they focus on that one immediately. None of the tattoos are straight-forward - they are each unique and coded in some way. After a few episodes, you begin to see that each tattoo leads them to some sort of crime about to take place, but none of the crimes seem to be connected in any way.

With each episode focusing on a different crime, the show unfolds in some ways like your typical crime show, with the detectives/investigators trying to figure out the crime and catch the bad guys. But, woven throughout are the mysterious tattoos and Jane's and Weller's quest to figure out who she is, where she came from, and who did this to her (and why). She does begin to get flashes of memory here and there, but they don't make much sense at first. We have watched three episodes of Blindspot so far and are hooked! The long-term mysteries plus the new investigations each episode make it a compelling, action-packed show with plenty of suspense and intriguing characters.

Five episodes of Blindspot have aired so far, and all of them are still available On Demand and on the NBC website (though the first is scheduled to come off Demand in about a week). Episodes are $1.99 each on Amazon Prime and are also available on Netflix.

What new fall shows are you enjoying?

Movie Monday 10/19: Redwood Highway

My husband and I have been too busy during our TV time together, watching all the great new shows that just started (and some old favorites), so we haven't had much time left for movies. But I did what I have been doing lately and watched a quieter, mellower movie on my own while he was out golfing last week.

I chose Redwood Highway, a warm, thoughtful film about family and aging that won awards at several film festivals. Award-winning actress Shirley Knight stars as Marie, a woman in her 70's who is living in a retirement home - and is not very happy about it. James Le Gros stars as Michael, her adult son, whom she argues with frequently. Her grand-daughter is getting married soon, but Marie disapproves - she feels she is too young at 22 (and she's marrying a musician!). At first, Marie refuses to attend the wedding, but one night, thinking back over her own wedding and other events from her past, she abruptly changes her mind and decides to attend the wedding on the coast...and walk all the way there, 80 miles away.

Most of the movie follows Marie on her journey, as she heads down the Redwood Highway (Oregon) toward the coast, through gorgeous parks and forests. She starts out a little rough, with the expected problems - terrible blisters, exhaustion, frustration - but she meets a kind stranger in one town named Pete, played by Tom Skerritt, who helps her with both first aid and emotional support and gives her the strength to continue. Marie camps along the way (she is obviously an experienced backpacker from years past) and meets other interesting people - most of them very kind, some not so much.

As she walks, Marie has plenty of time to think (as one does while long-distance hiking!) and revisits her past, finally facing up to some haunting memories. Meanwhile, while she is on this journey of discovery, her son and grand-daughter are panicked that she has gone missing and have police and search parties looking for her. I really enjoyed this quiet, contemplative movie. As a past backpacker myself, I loved all the natural beauty and scenes of hiking and camping and was glad to go along with Marie on her journey of re-awakening. It's a lovely, thoughtful film, with only mild suspense, perfect for those who can't handle tense movies.

Redwood Highway is currently available free on Amazon Prime and on Netflix, as well as on DVD.



Have you seen any good movies lately?

Weekly Inspiration: The Importance of Self-Care

I get weekly e-mails from the TED Talks website, and one feature this week caught my eye: a playlist of 9 talks all related to The Importance of Self-Care. As it turned out, I have previously watched almost every one of these talks (and posted some of them here on the blog), but it is an excellent collated playlist, and I recommend these highly.


Coincidentally, I just posted here on the blog this week about The Art of Truly Resting and described my own struggles to really slow down and rest when I need to, to drop the to-do list and the buzzing of "must-do's" in my head and truly relax. So, these talks - covering everything from being grateful to mindfulness to slowing down - are a good reminder to me that I need to take care of myself (and some of the ways to do that). Ironically, as I began watching one of the talks on this playlist - on slowing down - I was clicking over to my e-mail program to check e-mail! But I caught myself, had a good laugh at my own expense, and focused just on watching and listening to the talk.

Why is it so hard for us to take care of ourselves? For me, I think some of it stems simply from being a woman, a wife, and a mother. I was brought up to care for others and have done so my entire life (except for those few selfish years around high school & college! lol). I know that some of it is also just my personality - what the experts like to call Type A - always busy, always doing. Even when I am physically unable to be up and about, my mind is still running at top speed.

The greatest challenge for me in living with chronic illness has been to learn how to not be productive, how to truly rest & relax, and how to take care of myself. These wonderful and inspiring talks are a good reminder for me.

The Art of Truly Resting

TRULY resting & enjoying nature on my back deck

I had a hectic week here and am still not fully recovered from my crash due to bronchitis that began at the end of August - still struggling with the resultant flare-up of yeast overgrowth and my stamina is still not back up to my normal baseline. Wednesday, I had a haircut and then stopped in to see my father-in-law for a 5-minute visit...that turned into an hour when the elevator in his building was taken out of service! And yesterday, I took him to an emergency dentist appointment at 12:30. I would normally never schedule any appointment after noon (that's nap time!), but this was urgent (his crown had come out) and was supposed to be quick but turned into a 2-hour oral surgery. By the time he was done, I knew I was in trouble - felt just awful. In fact, I'd been just about to lie down on the tiny couch in the waiting room when he came out. I still had to get him and then me back home. I finally got up from my late nap at 5 pm and felt horrible and felt even worse this morning.

As usual, I had plans today - things that needed to get done: bills to pay, college visits to schedule, writing deadlines, and medical insurance claims to file. But, by the time I had breakfast, I knew I was in no shape to do all that. I did a few urgent things while lying on the couch with my laptop and then made a decision to "really rest."

This was a momentous occasion for me. I have a terrible time truly resting and setting aside the need to be productive. There is just always so much to do, and I am always behind. But I have learned from hard experience that resting is more than just lying down. For me, truly resting means reading a book, watching TV or a movie, meditating, or actually napping - all while lying flat, of course, with feet elevated. Bonus points for lying outside on my deck, among the trees, birds, and blue sky - I find nature so soothing and rejuvenating.

When I am not feeling well but not at my worst - maybe a 3 or a 4 on my scale of 5 - I have a tendency to still keep pushing myself. I lie on my back on the couch with my feet up, but I still have my laptop open and still try to get things done. I know, though, from years of experience, that that's not truly restful. I know that if I spend all morning on the laptop - even while lying down - that I will not feel better by lunchtime but probably worse. On a typical day, I really only truly relax in the evening, after 7 pm (I do have a hard and fast rule to put the laptop away by 7 pm), when my husband and I watch two TV shows together and then go to bed to read for an hour before lights out.

One time last month during my severe crash - just one time! - I gave in and completely "took a day off," setting aside the laptop and the to-do list and truly resting. I watched two old favorite 80's movies - Dirty Dancing and Flashdance (feel good movies) - and read on my deck. I felt so much better for it!

I know I need to do that more often, but I find it so difficult. I know intellectually that to keep working (even on my back), to keep my mind working, is not truly restful. But it is still a difficult thing for me to do - to give in completely.

So, I did it again today. By 9:30 am, I set aside the laptop and finished watching a movie I started earlier this week. Then, I lay in my chair on our deck in the fall sunshine and read my novel. After that, I had an early lunch and enjoyed an episode of Gilmore Girls, then went upstairs to meditate and take my nap. Now that's resting. And do you know what? By the time I went up for my nap, I felt a lot better already.

I don't know why it takes extreme circumstances to finally force me to to truly rest. I know my body needs it. I'm a smart person - I should have figured this out by now, after 13 years of illness. But I still find it very difficult to completely give in and give up on being productive.

Am I the only one who has this problem? Do others find it hard to truly rest and relax? How do you rest? Any tips would be greatly appreciated!

TV Tuesday: The Good Wife & Madam Secretary

This week's TV Tuesday features two powerful women in excellent back-to-back shows on CBS on Sundays (though we never watch anything when it actually airs anymore!): The Good Wife and Madam Secretary.  Both shows are top-notch: smart, funny, and engaging with excellent writing and casts. My husband and I were thrilled to see both shows return for new seasons two weeks ago.

The Good Wife, starring Julianna Margulies as Alicia Florrick, just started its seventh season, and it hasn't lost any steam. At the beginning of season 1, the show began with Alicia's husband, Peter Florrick, former State's Attorney for Cook County (Chicago), going to jail after a sex and corruption scandal that rocked the city and left Alicia in the spotlight. Publicly, she literally stands by her man in the press conferences, but behind the scenes, she is furious with him for cheating on her - and in such a lurid, public way (he was caught repeatedly with prostitutes). Alicia works hard to protect her two teen children from the media and her husband's scandal. With Peter in jail, Alicia has to go back to work, after 15 years as a stay-at-home mom. She gets a job with a prestigious law firm - Stern, Lockhart & Gardner - though she must start out as an Associate, along with a lot of younger lawyers just out of law school. Will Gardner, one of the firm's partners, was a classmate of hers back in law school, and it seems they might have been more than friends back then.

I won't go into much of the details beyond that starting point, because this show is filled with wonderful plot twists that we never saw coming. Alicia builds her new career, while juggling motherhood, and Peter eventually gets out of jail and resumes his politic career (this is America, after all). I loved Julianna Margulies in ER in the old days, and she is absolutely spectacular as Alicia and has won an Emmy and a Golden Globe for this role. The rest of the cast is just as good, with Chris Noth as the charismatic Peter, and Christine Baranski as Diane Lockhart (another of the firm's partners). Alan Cumming is one of our favorites as Eli Gold, Peter's campaign manager, as is Archie Panjabi as the sexy, mysterious investigator Kalinda Sharma. We were late to this show, finally listening to all the rave reviews from friends and family one summer, when we got the DVDs from the library and binge-watched 3 seasons in a row! You can watch the early seasons free on Amazon Prime or Netflix, and the latest season (2 episodes so far) is available On Demand and on the CBS website (seasons 1 and 7).

As if that wasn't enough, last year CBS also added Madam Secretary to its line-up, and we were soon hooked on that show as well. Tea Leoni stars as Elizabeth McCord, a former CIA operative who is named Secretary of State by the President, who is a former colleague of hers. Right from her first day, it is obvious that Elizabeth is going to do things her way, as her staff, headed by Bebe Neuwirth, rushes to adjust to her open, straight-forward approach. Each episode tackles a new international crisis of some sort - everything from hostages to informants to potential war - which keeps the plots fresh and interesting. If you could find any criticism with the show, it would be that they always manage to solve major world crises in an hour-long show, but we find it easy enough to just go along for the ride because it is so much fun.

At home, Elizabeth is married to World Religions scholar Henry McCord, played by Tim Daly, and they have three children ranging from young teens to young adult. In addition to her constantly changing duties as Secretary of State, Elizabeth must also juggle whatever crises come up with her family. The entire cast here - from Elizabeth's staff to her family and beyond - are all excellent and great fun to watch. There is a lot of chemistry between her staff members and plenty of humor, too, throughout the show. Tea Leoni has always been one of my favorite actresses - she was great in movies like House of D, The Family Man, and Ghost Town, and her crying scene in Spanglish is one of my all-time favorites! She's wonderful in Madam Secretary, as is Tim Daly, and the script is clever, suspenseful, and funny. You can catch up on Season 1 on Netflix or on Amazon Prime (though not free there), and season 2 is currently available On Demand and on the CBS website.


 

Movie Monday: The Life Before Her Eyes

I had a chance last week to watch another Sue-movie (i.e. not action or thriller!) while my husband was golfing, and I chose The Life Before Her Eyes, a haunting movie about friendship and tragedy, available free on Amazon Prime.

The movie opens showing the beginning of a friendship between two very different high school girls, Maureen and Diana. Maureen, a shy, unassuming girl, comes from a religious family and is involved with her church. In contrast, Diana is loud and brash, dresses provocatively, smokes pot, and has sex with inappropriate young men. Her mother is the high school's gym teacher, but she spends a lot of time away from home, leaving Diana on her own. Despite their differences, the two girls bond and become close, two misfits who find each other. Quite early in the film, though, we see a tragedy hit their high school when a boy they know goes on a shooting spree. He comes to the girls' bathroom where Diana and Maureen are hiding and tells them he will kill one of them...but we don't know what happens next.

At that point, the film shifts forward in time. Diana is an adult now, played by Uma Thurman, married to Paul, with a young daughter named Emma. She seems to be living a good life - in a lovely house, teaching art history, and happy with her family - but she is still haunted by the school shooting. From there, the movie follows Diana's current life, with frequent flashbacks to her high school years and her friendship with Maureen. I was a little confused by the movie's ending at first but soon figured it out.

Obviously, since it is focused on a horrific school shooting, this is a dark, sometimes disturbing movie (if you need further proof, it was directed by Vadim Perelman, who also directed The House of Sand and Fog, the most depressing movie my husband and I have ever seen!). It's not all depressing, though - the scenes of Maureen and Diana's growing friendship in high school are warm and poignant, though filled with a sense of foreboding because you know from the beginning that something terrible is coming. It's interesting, though chilling, to see the girls occasionally interact with the boy who will become the shooter. Seeing past and present twisted together makes this a very thoughtful and clever film, though it is a very somber, tragic story. The movie was based on the novel by Laura Kasischke.

Have you seen any good movies lately?

Weekly Inspiration - How To Wake Up

Toni Bernhard is a good friend of mine, though we've never met in person. She and I both got ME/CFS around the same time (2001 for her; 2002 for me), and we "met" online and immediately connected. Toni has written three books about applying Buddhist principles to everyday life. All of her books are applicable to those of us living with chronic illness, and her first and third books, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and How To Live Well with Chronic Illness: A Mindful Guide (just published last week!) directly address chronic illness.

Today, though, I am going to focus on her second book, How To Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow, which I just read and reviewed recently (as usual, I am a bit behind!). Although this book was written for anyone who wants more peace and happiness in their life, not just those who are sick, there is plenty of wonderful advice and inspiration in here for those of us living with chronic illness. In fact, I read it while very sick and housebound, and in that respect, my timing was perfect because it really helped me get through a difficult time. You can read my full review at my book blog to understand what the book is all about and see some quotes.

Here are a few additional quotes from How to Wake Up that I found particularly meaningful for those with chronic illness.

Here, Toni discusses impermanence, an important tenet in Buddhism and especially important to those of us living with illness - basically, the concept is that everything in life is always changing, so we should embrace and accept those changes (and even expect them), instead of getting upset over them. Toni summarizes this in simple terms, after offering some ideas for how to put this concept into practice:

"Whether impermanence appears to be friend or foe at the moment, seeing clearly into this universal truth can help us awaken to a peace and well-being that are not dependent on whether events turn out the way we expected them to. Upon getting up each morning, we can reflect on how we can't be certain if the day will unfold as we think it will and then resolve to greet it nonetheless with curiosity and wisdom. Greeting the day with curiosity means being interested in what each moment has to offer. And greeting it with wisdom means not turning away in aversion from our experience, even if it's unpleasant and even if it's not what we hoped for."
          - How To Wake Up by Toni Bernhard

Well, that pretty much describes every day with ME/CFS, doesn't it? We can never count on things going as planned, and we quite frequently encounter a day filled with surprises, where we have to change our plans unexpectedly. Learning to approach life expecting (and accepting) constant change brings a definite sense of peace.

In another chapter, she addresses anger, a subject I definitely need to work on. Though I am generally a calm, peaceful kind of person, certain people in my life can bring out anger and bitterness, usually because they treat me (with respect to my illness) differently than I would like. Toni shares a story we can all relate to: of going to see a new doctor who promises he can help her but then dismisses her brusquely when the tests he ran came back negative. She discusses her feelings of anger and her later realization that she wasn't angry because of the doctor precisely but because of her own expectations, her fervent desire for a miracle cure, and the way she responded to the doctor. She talks about how she addressed those issues and concludes with:

"...But as I like to say about the medical profession, some doctors come through for us and some don't. Just like everything and everyone in life.

Since this incident, I've had two similar experiences with other doctors, and yes, I was disappointed each time. But I didn't get angry. Now I know that anger only harms me. It doesn't get me better medical care, and it doesn't help me regain my health."
          - How To Wake Up by Toni Bernhard

I could go on and on - I have many pages tabbed in my copy of the book! - but I think those selections give you a good idea of how helpful and inspiring this book is (as was her first).

As I mentioned, Toni's third book, How To Live Well with Chronic Illness: A Mindful Guide, was just published this week, so that one is also available now. I plan to read and review that one next month, so stay tuned!

I hope you are as inspired by Toni's wonderful books as I am!

     

2015 NIH Grants for ME/CFS

Hi, it's me! Yes, I am still here - and still struggling with this major crash, six weeks now. I have finally gotten rid of the bronchitis but am left with a bad flare-up of my chronic yeast overgrowth, due to all the antibiotics I had to take. I can tell my symptoms now are due to yeast - severe flu-like aches, mild sore throat, always tired - just from past experience. I am doing all that I can to address it, using all the tools in my anti-yeast kit! Now, it's just a matter of time (I hope). I am making some progress and actually got out into the world (briefly) this week!

I am trying to get back into the routine of regular blogging, but all of my writing has suffered during this rough patch.

National Institutes of Medicine - photo from Health Rising

So, here's a very important post where someone else has done all the hard work for me. I turn once again to Cort Johnson, the dedicated and very talented investigator/writer behind Health Rising. Back in August (yes, I've been down that long!), Cort posted a comprehensive and very informative list of all of the 2015 research grants approved by the NIH (National Institutes of Health in the U.S.) for the study of ME/CFS. As he points out, there are a surprising number of them - just imagine what could be done with research funding to equal other serious diseases!

The grants in this list are not the old "Is CFS depression?" type of studies we saw in the past - these are solid, science-heavy studies on all aspects of our complicated illness - immune dysfunction, genetics, exercise intolerance, the role of infections, and more. And the studies cover women, men (finally!), and even pediatrics (double finally!).

Note that the first study listed on Cort's blog is being led by Ian Lipkin and Maddy Hornig who earlier this year released their data on a ground-breaking study of immune dysfunction in ME/CFS. Ian Lipkin is from outside of the ME/CFS world, known as a world-renowned virologist - definitely a good person to have on our side! But it's not all big names - there are plenty of new researchers in this list of grants, too. That's great news.

In fact, this is all great news! Very exciting to see so many complex studies with such depth to them and to consider the kinds of answers we could get in the coming years on biomarkers, possible causes, and effective treatments. The state of research into ME/CFS has never been better!

TV Tuesday: How To Get Away with Murder

One of our favorite TV shows from last year is back for its second season: How To Get Away With Murder. To give you an idea of how good this show is, our 17-year old son will not watch any TV with us, other than a few half-hour comedies...but he is hooked on this one! He actually sits down with us for an hour each week to see what happens next. It is a show filled with suspense and intrigue, and Viola Davis recently won a Best Drama Series Actress Emmy for her leading role.

On the show, Davis plays Annalise Keating, a law school professor and high-powered defense attorney with a kick-ass attitude. Each year, she chooses five of her law students to assist her in her practice with real cases. She selects those students at the beginning of season one, and they are a diverse group, all ambitious but each with his or her own quirks and secrets. Annalise is also assisted by two lawyers in her practice, Frank and Bonnie (played by Liza Weil, who played Paris on The Gilmore Girls, another current favorite show of mine!). The three lawyers and five law students tackle a variety of cases, all having to do with murder, while Annalise lectures to her Criminal Law class about...you guessed it - how to get away with murder, as a way of teaching them how to be great defense lawyers.

But that's not all. Right from the very first episode, we see that a murder has taken place that involves Annalise and her students. In those first episodes, scenes alternate back and forth between classes and cases and one very frightening night when the five students are trying to cover up a murder and get rid of a body. It takes a while (in fact, the entire first season!) for all of the pieces to fall into place so that the viewers fully understand what happened and who the murderer(s) are, but we were hooked from that very first episode.

But that's not all! So far, two episodes into the second season, there have been a total of 3 murders (so far) committed by various people on Annalise's team! Yup, this is one screwed-up group of people. Meanwhile, amidst all this murder, investigations, and cover-ups, the team keeps trying to act normal, go to classes, and try other cases. Oh, and of course, there is a lot of sex - it seems everyone is getting involved with ill-conceived relationships. Davis is not the only actor on the show worthy of accolades - it is an excellent ensemble cast, and the show is produced by Shonda Rimes, creator of Scandal and Grey's Anatomy.

The rapid-fire way the show is filmed is unique for television, as is its super fast pace. Scandal piles upon scandal, murder piles upon murder. The continuing puzzles in the show - both the ongoing issues among the team and the cases they try - are addictively compelling. You will guess who the murderer is over and over...and probably be wrong every time. If you enjoy reading mysteries and thrillers, you will love this show, though don't expect too many endearing characters!

What favorite TV shows of yours are back for a new season?

NOTE: The second season of How To Get Away With Murder is airing now and available On Demand and on Hulu. Both seasons are available on Netflix, and Season 1 is currently available for the odd price of $0.67 an episode on Amazon Prime.

Movie Monday: The Cake Eaters

sigh...here I am on yet another Monday, apologizing for not posting much last week. Believe it or not, I am still struggling to come out of this crash caused by my annual bout of bronchitis. I am definitely improving but not yet back to my normal baseline. I finished my last round of antibiotics last week, had a clear chest x-ray, and started to be able to do a few things around the house, but now I am struggling with the yeast overgrowth caused by the antibiotics (which is always present in me but badly flared up now). I did take a walk today - my first in over a month! Just 10 minutes - v-e-r-y slowly around our two cul-de-sacs - baby steps!

While my husband was out golfing one evening last week, I indulged in a Sue-movie, i.e. one with no action, car chases, or shooting. This is a rarity for me, with three men in the house usually choosing our movies!

I watched The Cake Eaters (free on Amazon Prime), a different kind of coming-of-age story, wrapped up with a family's struggle with grief. Kristen Stewart plays Georgia, a high school student struggling with Friedreich's Ataxia, a progressive neurological disorder that is very disabling. Georgia manages pretty well in spite of her disabilities; she is a good student and loves to spend time with her quirky, independent grandmother, Marg, played by Elizabeth Ashley. As the film opens, Georgia is escaping from her overprotective mother to spend a day at the flea market with Marg, selling haunting and beautiful black and white portraits her mother has taken of her, to help bring attention to the disease.

At the flea market, they meet Beagle and his dad, played by Aaron Stanford and Bruce Dern, respectively. They are grieving over the loss of Beagle's mother, after a long and difficult illness. Beagle is a young man unsure what to do with his life, now that his mother is gone, because he was totally focused on taking care of her. Now, he works at the high school cafeteria and dabbles in painting. His dad knows Marg and introduces him, and Beagle is immediately drawn to Georgia and not scared off by her disabilities. Soon after, Beagle's older brother, Guy (played by Jayce Bartok), shows up unexpectedly, after being away for three years.

As the three men try to figure out how to get along together and move forward, Beagle and Georgia get closer. Georgia's grandmother urges her to go slowly with Beagle, but Georgia tells her she doesn't have time to wait. The three men struggle with their relationship, secrets are revealed, and Georgia moves forward with her plan to experience all life has to offer before it is too late, despite her mother's attempts to protect her. All of the actors did a great job in these emotional roles, though Stewart was especially convincing in her portrayal of a young woman with a crippling disease. I really enjoyed this intense, coming-of-age family drama that looks at life with chronic illness, a topic not often touched upon in movies. Despite that subject matter, the movie is not depressing but rather focuses on life, love, and moving forward.

Have you seen any good movies lately?

And if you also like to read, check out what we've been reading this past week at my book blog.