Tuesday, June 27, 2017

TV Tuesday: Food Network Star

So, you may have noticed that after several years and many dozens of TV Tuesdays, I have not reviewed a single reality show. That's unusual, given how much of what is on TV now is reality TV. There's a simple reason for that: I really don't watch reality TV. I prefer scripted dramas or comedies and watch a very wide range of those, but there are only two reality shows I watch.

One is The Amazing Race, which is still - well, amazing after all these years. We used to watch it with our sons and loved cheering the teams on together, but I'm the only one left in my family who still watches it. The other reality show I watch is Food Network Star - I love to cook, I love to eat good food, and I enjoy this reality show that focuses on improving skills in the kitchen and on camera. The bonus: my son who rarely watches TV will sit and watch it with me if I turn it on during lunch!

The concept of Food Network Star is quite simple (and obvious from the title!) - it is a competition to find a chef who will be given their own show on Food Network. Pretty cool. The really cool part is that not all of the contestants are professional chefs (though many are) - some are caterers or chefs-in-training or even just people who cook for their families. There are usually 12 contestants in all, and each week presents them with different cooking challenges. Sometimes they work in teams and sometimes they are solo. Challenges almost always include some sort of presentation at the end, with the contestants learning how to handle appearing on camera. Usually one person (sometimes two) is eliminated each week, based on the appearance and taste of their food and the quality of their presentation. At the end, three finalists record pilots for their own shows, and one person is chosen as the winner and goes on to have his or her own Food Network show.

I enjoy watching the challenges, the cooking, and the presentations, but it is also fun to watch the relationships that develop over the course of the show. One reason I like this show and not other reality TV is that I really don't enjoy watching people be mean to each other! The contestants here are generally supportive of each other, and the judges - lately, Bobby Flay and Giada De Laurentiis - are also kind and supportive, often giving someone who messes up but seems to have potential another chance.

The show is now in its 13th season (episode 4 just aired). I think this is the 3rd or 4th season I have watched. It's fun to see one of the contestants on Food Network later, or even - occasionally - making it big. I just discovered in researching this post that Guy Fieri - renowned now for Guy's Big Bites and Diners, Drive-Ins, and Dives (one of our faves) - was the winner of season 2!

Season 13 is now available On Demand through cable providers. My own On Demand doesn't list the episodes in order (for some strange reason), so I refer to this episode list to figure out which one comes next - the show really doesn't make sense if you watch it out of order! You can also watch full episodes of the current season for free on the Food Network website. The current season - and most past seasons - are also available on Amazon for $1.99 an episode or a full season starting at $9.99 (some are longer than others) - see links below. And if you are interested in the history of the show and past winners, I found the Food Network Star Wikipedia page very interesting.

Do you watch any reality shows? Have you seen Food Network Star yet?


Monday, June 26, 2017

Movie Monday: Wonder Woman

During our recent vacation camping in Vermont, my husband and I had one cold, rainy day to contend with, so we left the campground to go into town. We met old friends for lunch, did some shopping, and then decided to just make a full day of it, with dinner and a movie in Morrisville, VT. The tiny movie theater there was showing the brand-new Wonder Woman movie, so we decided to see what all the fuss was about. We enjoyed this action-packed adventure very much.

I grew up in the 70's with the Superfriends cartoons and Lynda Carter as Wonder Woman on prime time, so I am well-acquainted with the famed female superhero. This new look at Wonder Woman, in the wake of dozens of comic book superhero movies in the past decade, finally gives her her due.

Israeli actress Gal Gadot stars in this new Wonder Woman film as Diana, Princess of the Amazons, later known as just Diana Prince. The movie opens on the secret island of the Amazon women, where they live and train together in a peaceful society. Connie Nielson plays Diana's mother, Hippolyta, Queen of the Amazons, and Robin Wright stars as Antiope, Diana's aunt and the fiercest warrior among this race of warrior women. Lilly Aspell is wonderful (and adorable) as the young Diana, eager to learn to fight, against her mother's wishes.

The Amazons' peaceful life is shattered when a WWI pilot crashes into the sea near their island, somehow getting through their protective barrier, followed closely by a German ship that is chasing him. After the Amazons defeat the German invaders, Steve Trevor, the downed pilot and spy who is played by Chris Pine, explains to Diana about the war that is tearing apart the human world. Diana, now a courageous young woman, feels a strong and compassionate need to help stop the war and leaves the island with Steve, despite her mother's pleas to stay.

Once in London, Steve and Diana try to deliver Steve's urgent intelligence about a new German chemical weapon to the British leaders, but they are unsuccessful in convincing them to act on this knowledge. Steve gathers a few friends, and their ragtag group heads off for the front to try to disrupt the German plan on their own. Along the way, though the men are mostly accustomed to the ravages of war, Diana is appalled by the suffering she sees and refuses to leave needy people unassisted. She gradually discovers powers that she didn't know she possessed.

As you would expect from any superhero movie, Wonder Woman is packed with action and suspense. Its battle scenes often incorporate slow-motion action so you can see Diana's moves up close. Given the subject matter, there is also the underlying spy movie plot, pitting good against evil, complete with mad scientists. What makes or breaks a superhero movie for me is the presence of humor, and there is plenty here, mostly through the motley crew Steve has assembled and some fish-out-of-water stuff when Diana visits London. There is also a hint of romance, as Diana and Steve are clearly attracted to each other.

The cast of the movie - both the Amazons in the beginning and the main characters in the war sequences - are excellent, and Gal Gadot seems like the perfect Wonder Woman (no offense, Lynda Carter). We both thoroughly enjoyed this suspenseful and entertaining movie. I'm not a huge fan of superhero movies, but I liked the humor and compassion in Wonder Woman, and I looking forward to its sequels.

Wonder Woman is currently in theaters. The DVD release is estimated for sometime in August, and you can pre-order both the DVD and the streaming version on Amazon now (links below).


Sunday, June 25, 2017

Weekly Inspiration: The Restorative Power of Nature

My husband and I have just returned from a week-long vacation in Vermont with our camper (hence the lack of recent blog posts!). It occurs to me - again - after spending a week mostly outdoors just how restorative and rejuvenating nature is. You can see more of my photos of the beauty of Vermont's natural areas here (or read about the VT bookstores and restaurants we enjoyed!).

Spending a week living in our camper in state parks, surrounded by forests and trees, lakes and streams, sunshine and blue sky, is a centering experience for me. It brings me back to my essential self. Although I try to get outside most days, my life is filled with obligations toward kids and other family, my home, my work, and even my blogs. I spend an enormous amount of time on my laptop, and when I leave the house, it is usually to run all over town doing errands or racing to get my father-in-law to a doctor's appointment or some other urgent matter. When we are camping, there is no internet, no electronics of any sort (we do bring our cell phones in case of emergency but we don't have smart phones), no obligations, and no to-do list taunting me!
Enjoying the outdoors at Emerald Lake State Park in Vermont
More important, though, I have come to understand, is not just the vacation from my usual life but the opportunity to spend so much time outdoors. Throughout the week, I can feel my levels of stress drop as I relax and adjust to the outdoor life.

It turns out I'm not the only one who thinks this way. Lots of research has been done on the effects of nature on people, much of which Florence Williams describes eloquently in this brief TED Talk:

She cites studies that have found that time in nature - even as little as 1 minute! - reduces stress, improves creativity, reduces self-criticism, and increases kindness. Spending time in nature has very real physical effects on us humans, including improving our immune function, as measured by Natural Killer cell function - something everyone with ME/CFS certainly needs! Williams also describes various projects being undertaken around the world to make nature more available and accessible, even to city dwellers - there's some pretty cool stuff going on! South Korea is even creating "healing forests" across the nation, where people can enjoy the healing effects of nature, both by themselves and in guided activities.

Back home, I have a long-standing goal to spend at least 10 minutes a day outdoors. That may not sound like much, but the research says it helps....all I know is that I feel better when I connect with the outdoor world each day. Today, I took a short walk around my neighborhood and am now writing this out on my back deck, lying in my favorite comfy bungee chair, looking up at the sky, feeling the breeze, and listening to the birds in the trees.
My favorite outdoor spot at home on our back deck

Try it yourself! Make time each day to get outside, even if it's just out to your own backyard or deck or patio for a few minutes. Lie down in a hammock or reclining chair. Leave the electronics inside and tune in to the sights, sounds, smells, and feelings of being outdoors - you'll be amazed at what you notice!

I wrote another post about nature, based on the inspiring words of Anne Frank, an older post on The Joy of the Outdoors, and a recent post about exactly HOW people with chronic illness can manage to enjoy camping and the outdoors, based on our own experiences.

How do YOU enjoy the outdoors? What positive effects have you noticed from being in nature?

Tuesday, June 20, 2017

TV Tuesday: The Fall

I am just back from a week in Vermont with my husband - camping, enjoying Vermont's quaint towns, visiting bookstores, great food, and of course, lots of down time for reading! Since our sons left for college, and my husband and I are now often traveling on our own, we have established a new habit when camping. In the evening, we watch a TV episode on DVD on my laptop in our pop-up camper (before we go to bed for reading time). We've been working our way through Dexter, since we have all the seasons of that show on DVD (we gave them to my son years ago). You can read my review of the show at the link. We are now up to season 3.

Back here at home, in between the spring and summer network TV seasons, we've been enjoying some streaming shows, most recently The Fall, a very dark and creepy Irish detective show.

Gillian Anderson (of X-Files fame) stars as Stella Gibson, a cold-seeming Detective Superintendent who's been sent to Belfast to review a case involving the murder of a young woman whose father is a prominent businessman in the community. While she's there, another murder occurs, and Stella realizes there is a serial killer on the loose. Stella works the cases along with the local detectives, and in the first episode, we see a very different side of Stella as she boldly invites another detective back to her hotel room for a passionate night.

Meanwhile, viewers also see things from the perspective of the serial killer, Paul Spector, a seemingly normal family man who lives with his wife, a nurse who works in the NICU, and two small children. He's an affectionate father at home but goes out at night and murders women in cold-blood, often posing their dead bodies in intimate ways. As Stella and the police force collect clues and get closer to Paul, his very controlled life starts to get more and more unbalanced, as his two lives threaten to collide.

This is a dark and compelling show, with a seriously high creep factor! To see Paul murder a woman and then, hours later, hug his little girl and tuck her into bed is absolutely chilling. Stella becomes more and more obsessed with the case, and Paul begins to pay attention to her as well. This show is unusual for a detective show, in that it involves a single case spread over time, rather than a new case in each episode (reminding me a bit of The Missing). The tension builds as Stella gets closer to identifying Paul, and Paul becomes more desperate to fulfill his sick needs and stay away from the police. The cast is all excellent, especially Gillian Anderson, with her cool exterior hiding a passionate center and Jamie Dornan as the super-creepy Paul. We also enjoyed seeing Archie Panjabi (aka Kalinda from The Good Wife) as the medical examiner.

As is typical with shows from the UK and Ireland, the seasons are short (just 5 episodes in the first season). We are into the second season now and are totally hooked...though we often watch The Fall first and then something a bit lighter before bed! All three seasons are available on Netflix or you can get the first two seasons on Amazon streaming for $1.99 an episode or $8.99 a season or on DVD (links below).

Have you seen The Fall yet?  Which detective shows do you enjoy?


Sunday, June 11, 2017

Weekly Inspiration: Music

Amazingly, with all my posts on inspiration and joy, it looks like I haven't really written much yet about music.

Music is a great source of joy for me and provides a great pick-me-up when I am feeling down. Like most people, I have certain songs I turn to that never fail to lift my spirits. I grew up in the 70's and 80's, so most of my favorite songs are pop and rock, from then to now. Some work for me because of the lyrics, some have beautiful, uplifting melodies, and some cheer me up just because they are great to sing along with. It's hard to feel down when you are belting out "Bohemian Rhapsody" by Queen!

Here are a couple I have been listening to this week:

Believer by American Authors - When this song was first released in 2014, my oldest son posted it on my Facebook wall and wrote, "I know you will love this new song, Mom!" He was right - he knows me well, and he and I have a special connection from all those years of sick days spent together. This is a wonderfully uplifting song, with a great combination of upbeat, optimistic lyrics and a peppy tune. Here's a version of the song with the lyrics shown:

Though you should also check out the band's original video because it is really cute and clever (though it has nothing at all to do with chronic illness):

The other song that's been in my head all week was thanks to the Netflix show Sense8, which we've been watching with our son (review coming up next week!). This show is all about a strange, psychic connection between 8 people all over the world. At the end of episode 4 (I think), all 8 people - each in a different part of the world - start singing the same song: What's Up by 4 Non Blondes. I'd never heard of the song before, nor the band, but it's a very catchy song that really gotten into my head. It's another song that wasn't written about illness but feels applicable and lifts my spirits:

I have a playlist on my iTunes called Cheer Up Music, that includes a wide range of spirit-lifting songs, like:
  • The River of Dreams by Billy Joel
  • Best Day of My Life by American Authors 
  • Breathe In, Breathe Out by Mat Kearny (from Volume 3 of the Grey's Anatomy soundtrack)
  • Days Go By by Keith Urban
  • Happy by Pharrell Williams (a trite choice but I love it!)
  • Never Let Your Fire Go Out by The Radators (a favorite band from New Orleans)
  • Sing by the Glee cast
  • Such Great Heights by The Postal Service (love their whole album)
  • Sunshine on My Shoulders by John Denver
  • I Will Survive by Gloria Gaynor
I have about 100 songs on the list, so this is just a sampling, but you can see it's a wide variety - simply the songs that make me feel good!

If you're on Spotify, check out the Happier 911 playlist, put together by the listeners of the Happier podcast. There are a few strange choices there, but it's all songs that podcast listeners said lift their spirits.

How about you? Do you listen to music when you are feeling down?

Which songs lift your spirits and cheer you up?

Saturday, June 10, 2017

Good News in ME/CFS Advocacy & Research

How about some good news for a change? I don't know about you, but I am overwhelmed by what I hear on the news each morning and what it might mean in the future for me and my family.

So, here is some good news in the world of ME/CFS, some definite signs of progress!

NIH Launches In-Depth In-House Study of ME/CFS
This study was first announced in 2015 but has received some recent publicity and seems to be moving forward. This article explains how extensive the study is and why it is important. How is this different from other research studies?
  • It is being conducted by the NIH itself, using its own in-house experts. Given all the recent news about proposed slashes to the already tiny budget for ME/CFS, this is huge news, that the NIH has invested in our disease this way.
  • It is perhaps the most extensive study ever undertaken, using strict diagnostic criteria for ME/CFS and an enormous battery of tests, including sleep studies, immunological testing, genetic testing, different types of MRI, exercise testing, metabolic testing, and more - all in one study.
  • Participants in phase 1 include 40 severely ill ME/CFS patients who meet the strict criteria, plus another 20 patients who previously had Lyme disease (that part is exciting to me!), and 20 healthy controls.
  • In the first phase, over 3-5 years, they are searching for biological markers, the second phase will take that information and apply it to a larger population of patients, and the third phase will try interventions/treatments.
Stay tuned for results - hopefully, they will be sharing conclusions and progress along the way.

New Primer on Pediatric ME/CFS
The wonderful and well-respected Dr. Peter Rowe, of Johns Hopkins, (pediatric ME/CFS and Orthostatic Intolerance expert) has collaborated with Solve ME/CFS Initiative to publish a new Pediatric ME/CFS Primer in an upcoming issue of the journal Frontiers in Pediatrics. The primer was envisioned by the New Jersey ME/CFS Association and written by a team of experts, led by Dr. Rowe. You can read more about the new pediatric primer here and link to one of Dr. Rowe's excellent webinars at the same page. This is fabulous news for the millions of sick kids out there! It should help spread the word to regular pediatricians about the effects of ME/CFS on kids and how to treat it.

ME/CFS Advocacy Week 2017 Was a Huge Success!
This year, in conjunction with ME/CFS Awareness Day on May 13th and ME/CFS Awareness Month in May, the Solve ME/CFS Initiative joined forces with #MEAction, along with over 1,000 volunteer advocates. Their planning and efforts paid off, with these successes:
  • 71 meetings with the offices of Congressional representatives in Washington, DC
  • 8 face-to face meetings directly with members of Congress
  • A Congressional briefing providing information on ME/CFS
  • Over 3.000 messages sent to Congressional representatives by advocates
  • Dozens of local meetings with Congressional offices around the country
  • 6 politicians Tweeted about ME/CFS!
You can read all about the various efforts and their effects here. A big thanks to all of the advocates - patients, families, friends, and more - who helped make all this happen. It seems we are finally getting our message heard and spreading the word about the effects of ME/CFS to those in power.

Excellent Response to NIH Requests for Proposals
The National Institutes of Health (NIH) in the U.S. sent out two requests in January, for two different kinds of research centers. ME/CFS featured prominently in almost a dozen of these proposals, each including a wide range of diverse scientists and medical researchers. Even better, many of the top scientists included in these proposals will be applying their considerable talents to ME/CFS for the first time. This is just what we need, a double whammy: NIH funding for complex ME/CFS projects and an infusion of new talent to complement the wonderful but small group of experts currently dedicated to ME/CFS research. You can read all the details in this update from Solve ME/CFS Initiative, who were involved or assisted with many of the proposals.

Wednesday, June 07, 2017

New ProHealth Article: Travel Tips for the Chronically Ill

My Travel Kit
My latest article has been published at the ProHealth website, just in time for summer: Travel Tips for the Chronically Ill. You can read the full article at that link, and I will reprint it here on the blog next month.

This article pulls together travel tips from our extensive experience: 15+ years of traveling with at least 1 of us (and sometimes 3 of the 4 of us) chronically ill. Through all that time, we have continued to travel: driving and flying to visit family, annual 3-week long trips cross country with our camper, vacation with extended family (those are the toughest), and more recently, my husband and I venturing out on some empty-nest road trips of our own. I've written here on the blog before about our tips for travel, but this article puts all of that experience in one place.

Stuff I bring to help with OI
The article mentions the important of understanding and treating Orthostatic Intolerance (OI), which greatly affects everyone with ME/CFS. You can read more about OI and how to treat it in this post. Treating OI will not only make travel easier for you, it can often dramatically improve all of your symptoms. You can also try other treatments to improve your condition so that you can travel more easily (or at all, if you are currently severely ill) - this post on Effective Treatments for ME/CFS explains about the treatments that have most helped my sons and I to feel better and become more active. Finally, if - like us - you enjoy the outdoors, this blog post includes some of the same tips but focuses specifically on outdoor activities & travel.

My husband and I are planning a week camping in Vermont this month, and we will put all these tips int use!

Do you have any travel plans for the summer?

Tuesday, June 06, 2017

TV Tuesday: Anne with an E

As I posted a few weeks ago on TV Tuesday, the spring shows have all wrapped up now, the summer shows are just starting this week, and so we have been searching for new shows to watch on the streaming services. I was thrilled to hear about the new Netflix series Anne with an E, which is based on the classic children's novel Anne of Green Gables by H.M Montgomery (my review at the link). I just read Anne of Green Gables for the first time two summers ago, as part of my Big Book Summer Challenge, and I absolutely loved it, so I was excited to hear about this new adaptation. It's wonderful so far.

In case you haven't read the novel, Anne Shirley is an orphan who has had a very tough life. She's been mistreated and brought into homes only to act as unpaid labor for housework and childcare. In the first episode, Anne is traveling by train to the town of Avalon, located on Prince Edward Island, to be adopted by an elderly brother and sister, Matthew and Marilla Cuthbert. The problem is that Matthew and Marilla had requested a boy to adopt because they need help with the chores on their farm, Green Gables. Despite the mix-up, Anne herself wins Matthew over quickly at the train station.

Anne is an exuberant, imaginative child brimming with energy and enthusiasm. She has bright red hair (which she detests) and a hard life, but she doesn't let anything get her down. She just plows forward, with a smile on her face, talking a mile a minute. Reticent Matthew, who rarely speaks to anyone except Marilla, is taken aback at first but soon enchanted with this bubbly, kind girl who is so full of life. He brings her home, despite the fact that she isn't the boy they asked for. Of course, this is a problem, and Marilla is more prepared than Matthew to hold the line and get this mistake corrected. The first episode is 90 minutes long and deals with this first very significant conflict in the story. It's no spoiler to say they eventually work things out, since the book is called Anne of Green Gables!

Each episode follows Anne through another new experience filled with potential stumbling blocks: meeting a new friend, passing muster with the judgemental neighbor, and starting at school for the first time in her life. Anne's determination and exuberance often get her into trouble, but there are also conflicts due to her upbringing and background. This small, insular town is not very tolerant of those different than themselves. Some feel sorry for Anne, but many judge her and look down on her. However, for the first time in her short life, Anne has a real family who care about her and a real home.

I have watched 3 episodes so far, including that first 90-miute long one, and am loving the series. Young actress Amybeth McNulty does a fantastic job of bringing the joyful, bursting-with-energy Anne alive on the screen, and Geraldine James and R.H. Thomson similarly seem like the perfect Marilla and Matthew. The casting is excellent, as is the script, some of which I recognize directly from the book. All in all, it's a wonderful production, filled with warmth, humor, and all kinds of issues that are just as important today as they were in the 19th century when this story takes place. It's a great show to watch with your kids, but I am enjoying it fully all on my own, too!

As a Netflix original program, Anne with an E is only available on Netflix.

Sunday, June 04, 2017

Weekly Inspiration: Honesty & Hope, Life & Death

I often feature either quotes from a book I've read or a TED Talk on Weekly Inspiration, as the source of my inspiration and a springboard for discussion. Well, today is special because this post features BOTH a book and a TED Talk - oooh!

Last fall, I read the best-selling memoir When Breath Becomes Air by Paul Kalanithi, a book that got a lot of (well-deserved) attention in 2016. The author, a neurosurgeon, wrote it while he was dying of lung cancer. It is a very open, honest look at his experiences, as well as the bigger subjects of struggles and joy, life and death. You can read my full review of the book at my book blog.

Although Paul had cancer, much of his experience with the sudden shift from wellness to illness struck a chord with me, like in this quote:
"Severe illness wasn't life-altering, it was life-shattering. It felt less like an epiphany - a piercing burst of light, illuminating What Really Matters - and more like someone had just firebombed the path forward. Now I would have to work around it."
          - When Breath Becomes Air by Paul Kalanithi

Yup, that's about it. I think "life-shattering" is a good explanation for how you feel after your diagnosis.

This observation equally moved me and felt perfectly applicable to life with chronic illness:
"Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day.
...If time dilates when one moves at high speeds, does it contract when one barely moves at all?"
           - When Breath Becomes Air by Paul Kalanithi

I'm sure that those of you who are homebound or bedridden can relate to that one. He also writes eloquently about his feelings when attending a medical school reunion at Stanford: "Yet being there merely heightened the surreal contrast of what my life was now" (that's just a short excerpt from a longer, very moving passage). I felt exactly the same way when I attended my 20th high school reunion, shortly after my diagnosis, tongue-tied as to what to say to my former classmates, how to explain the sudden, sharp turn my life had made, and how to reconcile my new limitations against what my peers were doing.

The whole book was excellent - very moving and powerful - and his wife wrote the last chapter, finishing it after his death.

So, I was immediately interested when I saw that Paul's wife, Lucy Kalanithi, had given a TED Talk: What Makes Life Worth Living in the Face of Death. You can watch the brief 16-minute video of her talk here:

I was equally moved by Lucy's talk as I was by Paul's book. As with the book, this isn't a depressing look at death but an insightful consideration of life, while recognizing that death is a natural part of life. Some of the topics Lucy covers in her talk that are very applicable to those of us with chronic illness (or anyone, really), include:
  • Resilience, an absolutely critical characteristic for those of us living with these rollercoaster illnesses.
  • Redefining your definition of success.
  • Honesty - being willing to say the truth out loud (I SO wish my extended family understood this).
  • Joy as a part of life, even in the shadow of death.
  • The importance of hope. I saw this first-hand with my Dad. Although he was diagnosed with Stage IV melanoma, his oncologist gave him hope for what might be possible. I also tried to give him hope, with a book that had helped me tremendously when I first got sick, The Anatomy of Hope by Jerome Groopman. As a result, though my dad was naturally a realist and not one to sugarcoat things, he maintained that sense of hope throughout his year of treatments. I sincerely believe he had a full year with us in part due to his sense of hope. I didn't see him lose that until the very last weeks of his life. It was an incredible gift that his doctor gave to him, as Lucy talks about here. Hope is also very, very important to those of us with chronic illness.
Although both the book and the TED Talk are about death, they are both ultimately uplifting and inspiring in their view of the meaning of life, how suffering is an integral part of life, and how to face your challenges without giving up hope and joy.

I hope you find these as inspiring as I did.

Have you read Paul's book yet? Did you relate to any of the quotes I shared here or anything from Lucy's talk?

Wednesday, May 31, 2017

The Challenges of Being a Sick Parent

On April 6, my article was published on the ProHealth website's Inspiration Corner: The Challenges of Being a Sick Parent. I know that many of you can relate to this topic - trying to be a good parent when you are the one who needs to be taken care of.

I have written about this topic many times here on my blog - you can click on the "parenting" category at the bottom of this post to read older posts like Who Takes Care of Mom? and Taking Care of Me.

For this article, though, I also turned to some experts - other sick parents. I asked for their input on the biggest challenges of being a parent with a chronic illness and also their tips and incorporated those into the article.

I would love to hear more feedback from other sick parents. Take a look at the article below & let me know in the comments:

What are YOUR biggest challenges as a parent? And what are your tips for coping?

The full article is reprinted here:

The Challenges of Being a Sick Parent

Living with chronic illness is a huge challenge, but when you are a parent, there are additional burdens to bear. Parents are supposed to be the caretakers, always putting their children’s needs first. There is a lot of pressure in today’s world to be an involved parent – to go to every school function and sports game, to volunteer for your child’s organizations, to give amazing birthday parties, and more. Plus, most parents love their children unconditionally and want to give them the best of themselves. So, what happens when mom or dad is the one who needs to be taken care of?

Based on my own experiences and those of other sick parents, being a parent with chronic illness brings many difficult challenges. First and foremost are feelings of inadequacy, self-pity, and – the big one – GUILT. You may feel bad about all the things you can’t do with your kids, the plans you had for being an ideal parent before you got sick, your kids having to take care of you instead of the other way around, and even that your kids don’t know the real you, the person you were before you got sick. These feelings of guilt and inadequacy can eat away at you, adding to the physical pain and discomfort you already feel from your illness and even making you sicker.

From a practical point of view, there are the challenges of how to get everything done – around the house, taking care of the kids, and shuttling them to activities. Many of us still have old expectations from our lives before getting sick, of getting everything done, being a perfect parent, and juggling house, kids, work, and more. Not being able to do it all anymore can make us feel even more guilty and helpless. These kinds of negative feelings – piled onto the pain and exhaustion of your illness – can leave you feeling impatient and angry, perhaps even lashing out at your family, which can lead to even more guilt, in an endless cycle.

So, what can you do to break this cycle and be a better parent while sick? Parents in an online support group helped to come up with these coping tips:

Accept the new you and your life as it is today.
To your kids, you’re just Mom or Dad – they accept you as you are and love you. You need to accept yourself as you are now, too. This is your life for now. It’s not how much you can do that matters; it’s how much you love them.

Spend time together.
Maybe you can no longer take them to a museum or water park. Focus on spending time together in a way that you can manage – enjoying a movie or TV show together, reading a book in bed, playing a quiet game – and treasure your time with them. Show them that you enjoy their company. It’s trite but so very true: their childhoods really do go by in a flash, so cherish each day.

Drop the guilt.
No more guilt or self-pity: you are enough, just the way you are. Instead of wallowing in feeling bad about what you can’t do, focus on your kids. What brings them joy & makes them happy? Instead of guilt when you can’t do something, cultivate a Buddhist principle called mudita, finding joy in the joy of others. Share in your family’s joy even when you can’t participate. Have them send you photos, text them while they are out, and experience their joy vicariously. When your child comes home from an outing all excited, give him or her your full attention and share in their enthusiasm, even if you can’t share in their activities.

Take care of yourself.
As parents, our natural inclination is to sacrifice our needs and put our kids first. But the more exhausted and sick you are, the harder it is to be the kind of parent you want to be. So, take care of yourself– physically & emotionally – so that you can be there for your kids when they need you.

Lower your expectations.
Part of accepting yourself as you are now is dropping those old expectations of the ideal parent. It’s OK to get cupcakes from the store for your child’s birthday, not to volunteer at school, and to let the house get messy. It’s even OK to limit your kids to just one activity at a time, as we did – they may be better for it, with downtime to be creative and relax. Focus on spending your limited time and energy with your kids. For events outside the house, concentrate on those that are most important to your child and plan to rest before and after. Let go of the rest.

Get help.
With your partner, family members, and friends, decide how to maintain the house and yard. Don’t be afraid to ask for help – your loved ones want to help you but probably don’t know what you need. Don’t forget to get the kids involved in helping with the chores! Enlist parents of your kids’ friends to help with carpooling. When an event comes up that you can’t attend, invite grandparents or other family members or family friends. Hire help if you can afford it – consider this no longer a luxury but a necessity in your budget.

Looking back at my sons’ childhoods and the young adults they are today, I can tell you first-hand that there are some silver linings to being a parent with a chronic illness. Your kids will grow up with more empathy and compassion than most and will grow into caring adults. Having to help around the house makes them more responsible and independent. If you previously worked outside the home, you will be present more and have more time with your child than most parents do. This can result in closer relationships than most parents and children have, especially as they grow up. In a slower-paced life, your kids will grow up with a greater sense of peace and the ability to find joy in small moments every day. It’s not easy, but you can be a good parent in spite of your illness. Your children may actually be better for it in the long run.

Tuesday, May 30, 2017

Movie Monday: Hidden Figures

Yes, I know it is Tuesday...but it FEELS like Monday because of the holiday yesterday. Besides, I have a backlog of movie reviews to write and nothing new to review on TV, and I already wrote a TV Tuesday post on the summer shows I am looking forward to. So, it's Movie Monday, despite what the calendar says!

Last weekend, my husband and I rented Hidden Figures from Redbox, a movie I've been dying to see since it was released in theaters this winter. It was just as good as I'd heard and earned every one of its many awards and nominations.

Hidden Figures is an adaptation of the book of the same name, based on the real-life story of the team of female African-American mathematicians who served a vital role in the space program in its early years, despite rampant discrimination. Never heard of them before? That's the whole point of this wonderful movie!

As the story opens, we see Katherine Johnson, played beautifully by Taraji P. Henson, as a young girl in West Virginia who is a math whiz. Her crazy skills get her a place in a prestigious school, years ahead of her peers and supported by her proud parents. Katherine grows up to work at the new government agency NASA, as a "computer," one of a roomful of black women who toil away in the basement doing the mathematical calculations necessary to support a whole team of engineers trying to conquer the space race. Mary Jackson, played by Janelle Monae, and Dorothy Vaughan, played by Octavia Spencer, also work as computers with Katherine.

Dorothy is the de facto leader of the group, though her superior, the white Mrs. Mitchell, played by Kirsten Dunst, won't recognize her as such, so she doesn't get the title - or the salary - of supervisor. Mary is tapped to assist a group of engineers and yearns to be an engineer herself, but she's not allowed to take the necessary night classes because the local high school where they are held is for whites only. Katherine - still just as brilliant as in her childhood - gets moved up to the main group of scientists and engineers who are working to catch up with the Russians in getting a man into space and back. The supervisor of the group, Al Harrison, played by Kevin Costner, requested the best mathematician available and was surprised to see Katherine, a black woman, show up.

All three women are portrayed in the movie - their personal lives, their careers, and their struggles - but Katherine is at the center of the film. Her calculations of flight trajectories, launch windows, and return paths were critical in getting John Glenn back home safely from the first Mercury mission that put a man into orbit and dozens of other missions during her long career with NASA. Despite Katherine's brilliance, she encountered huge obstacles at work, including horrible discrimination from her white male co-workers, from not being able to drink from their coffee pot to having to walk for miles across campus and back to use the only black women's restroom. Her co-worker, Paul Stafford, played by Jim Parsons, is particularly hesitant to give her credit where due, though her supervisor, Al, eventually sees her talent and supports her.

This is a stunning, horrifying, glorious story of overcoming obstacles and achieving your dreams. All three of the main women (and, I'm sure, the rest of the computers as well) faced significant challenges, not the least of which was being invisible to their white coworkers, but their strength, perseverance, and dignity are inspirational. Though Katherine is at the center of the movie, we also see Mary and Dorothy deal with their own struggles and climb their own mountains.

It's a wonderful movie, all the more powerful because it is true. In 2015, the real Katherine Johnson, at age 97, was presented with the Presidential Medal of Freedom by President Obama. The open discrimination these talented women faced is stunning to see, especially since these events occurred only about 60 years ago. It is uplifting and moving to see each of them break through barriers to achieve her goals. The acting - as you might guess from the all-star cast - is outstanding, and the three lead actresses are especially affecting in their performances. It's an incredible story, ending with a joyful feeling of triumph.

Hidden Figures is currently out on DVD or you can rent it (streaming) on Amazon for $4.99 (link below for both). It is only available on DVD through Netflix, not streaming.


Friday, May 26, 2017

New Article at ProHealth: When Your Kids are Chronically Ill

My latest article has been published in ProHealth's Inspiration Corner: When Your Kids Are Chronically Ill. You can read the full text of the article at that link (and I will post the full article here on the blog in a month).

As readers of this blog know, I have plenty of experience in this area, since my own two sons got ME/CFS at ages 10 and 6. They are now 22 and 19, so we've dealt with chronically ill kids for well over a decade. Our youngest is now fully recovered after 10 years with mild ME/CFS that was well-controlled by treating Orthostatic Intolerance. Our older son has had a tougher time, also taking on Lyme disease and two other tick infections (bartonella and babesia) when he was about 12 (though they went undiagnosed for over three years). He is now in college, living mostly on his own. He still struggles with ME/CFS and the three infections, though with treatment he is able to take three classes a semester, work part-time, and enjoy an active social life.

In addition to all that personal experience, I crowd-sourced this article with input from the parents in our Parents of Kids & Teens with ME/CFS and Related Illnesses group on Facebook. The parents there had some wonderful ideas on not only how to support your kids but also on how to take care of yourself, as the role of constant caretaker is a tough one (and many of the parents are sick themselves, like me).

If YOU have children, teens, or young adults who are chronically ill, check out the excellent advice from our group in the article. You are also welcome to join our Facebook group for parents (keeping in mind that is is ONLY for parents or other adult caretakers of sick kids, teens, and young adults). There are parents in the group whose kids have ME/CFS, fibromyalgia, Lyme and other tick infections, EDS, POTS, and other related conditions. Just click the Join button at that link. Then watch your Facebook messages because that's how we confirm membership for the group.

Do you have advice for other parents of sick kids?

Tuesday, May 23, 2017

TV Tuesday: Occupied

Last week, I wrote on my TV Tuesday post about being in-between TV seasons right now - the spring shows that are just wrapping up and the ones we are waiting to return this summer. We hit that conundrum again this week. Our 22-year old son is home sick from college, and we finished the two shows we've been watching with him - Colony and Travelers (both highly recommended - reviews at the links). So, we searched the streaming services for something new to try that all three of us might like.

We found Occupied, a Norwegian thriller set in the near-future. Climate change is the biggest challenge in this future world. The U.S. has become energy-independent and pretty much stick to themselves. Europe is running out of fossil fuels and starting to panic. In the midst of these challenges, Norway has decided to do something unprecedented. They have developed a way of producing clean energy using Thorium (a real element and a real, though distant, possibility for fuel production). In response, with their giant new Thorium energy plant open, they have decided to halt all production of oil and gas in the Black Sea. The EU and Russia are not too happy about this development because they aren't yet ready to give up fossil fuels. They threaten Norway with sanctions.

In the first episode of Occupied, the Prime Minister of Norway, who is in the Green Party, announces to the world that they have halted oil and gas production. There is swift action from the EU and Russia, and Russian forces quickly enter Norway and take control over the oil rigs out in the Black Sea. Ostensibly, the Norwegian government is still in place, but little by little, it becomes obvious that Russia has more control over their country than first appeared.

Against this backdrop, the show focuses not only on the Prime Minister and his cabinet but also on two families involved. Hans is one of the Prime Minister's guards - a Secret Service-like position. His wife has just been appointed a judge, and they have an adorable little girl. Thomas is a reporter for a small newsmagazine and an old friend of the Prime Minister's, though they now run in very different circles. Thomas is determined to get to the bottom of what is really happening in his country with the Russians. His wife, Bente, runs a failing restaurant that could be saved by new wealthy Russian patrons. They have two children.

We've only watched the first two episodes so far, but we are eager to see more. Much of the dialogue is in Norwegian (and some Russian), with subtitles, though there is some English spoken, too. The plot is intriguing, and there is plenty of suspense in seeing how the situation will escalate. In this early part of the show, the entire country seems precariously balanced between independence and being occupied (you know which way that will go just from the name of the show). The actors are all engaging and interesting. We're all enjoying it so far and can't wait to see what happens next!

Note that we are also enjoying another Norwegian show, Lilyhammer, that is equally good though much lighter, about an American mobster relocated to Norway as part of Witness Protection.

The first season of Occupied is available on Netflix. You can also purchase Occupied on Amazon for $1.99 an episode or $11.99 for the first season.

Sunday, May 21, 2017

Weekly Inspiration: Lessons from Books

It's been a while since I've written a Weekly Inspiration post because I have been either traveling or busy on the weekends lately, when I normally write them. I finally have a quiet Sunday morning at home.

The focus of today's inspiration is a wonderful book that I am just in love with: Books for Living by Will Schwalbe (my review at the link). Schwalbe is the author of the best-selling The End of Your Life Book Club, which you may have heard of, where he chronicled his mother's last months and the books that he shared and discussed with her. I read Books for Living for Booktopia, a wonderful weekend event that brings together authors and book lovers (that was one of my trips and one that required two weeks to recover from - but it was worth it!). So, I not only read his book but also got to meet the author - he is just as warm and witty as his book.

You can read my full review at the link, but Books for Living is a series of essays about lessons the author has learned from a wide variety of books. Each chapter/essay focuses on one book and one lesson learned. My copy of the book is filled with dog-eared pages: books I want to read, quotes I want to remember, life advice, and more. So, today, I just want to share a few of my favorite quotes that are applicable to a life of chronic illness and that I found inspirational. I hope this will inspire YOU to read the book yourself (or listen to it on audio).

From the chapter on The Importance of Living by Lin Yutang (published in 1937), on the lesson of Slowing Down:
"...he wrote that he is "quite sure that amidst the hustle and bustle of American life, there is a great deal of wistfulness, of the divine desire to lie on a plot of grass under tall beautiful trees of an idle afternoon and just do nothing." The quote from Lin that at first seems to sum up his philosophy is this: "If you can spend a perfectly useless afternoon in a perfectly useless manner, you have learned how to live." "
          - Books for Living by Will Schwalbe, on The Importance of Living by Lin Yutang

According to Lin's standards, then, we must really know how to live! This chapter and this passage struck me because Slowing Down is one of the primary lessons I have learned from living with chronic illness. If I don't spend some time resting and doing nothing each day, then I suffer severe consequences. Of course, we aren't choosing to slow down, we are forced to, but it can still be a valuable and instructive part of our lives.

The other way this passage strikes me is that I am not naturally the kind of person who can "spend a perfectly useless afternoon in a perfectly useless manner." In fact, I have a lot of trouble doing nothing or even slowing down. Yes, I take time out for my daily nap every afternoon and I make sure I get to bed early so I can get my 9 - 10 hours of necessary sleep at night. But when I am up and feeling OK - or even feeling a bit bad but not totally crashed - I have trouble relaxing and taking time out to do nothing. In fact, I think I feel even more pressure than normal, healthy people to be productive because my productive time is so limited. So, this chapter - and especially this passage - are lessons I can still learn from. I definitely want to read The Importance of Living by Lin Yutang.

From the chapter on Stuart Little by E.B. White, on the lesson of Searching, the last part of the last passage, on lessons learned from Stuart:
"...But more than anything: Try to be as cheerful and optimistic as you can be in the face of whatever comes next."
          - Books for Living by Will Schwalbe, about Stuart Little by E.B. White

Schwalbe points out that in this classic children's book, Stuart is faced with one challenge after another, but he perseveres with a bright optimism, always cheerful and polite and kind. I like to think that I have faced my illness in the same way (once I got past the despair and depression of those early years). The basis for my emotional well-being while living with chronic illness is acceptance of my life as it is and never-ending optimism about the future and what new research may bring us. Who knows? Maybe I learned this from reading Stuart Little when I was a kid!

From the chapter on What I Talk About When I Talk About Running by Haruki Murakami, on the lesson of Napping:
"Dr. Campbell [an oncologist] realized that even though he had cared for many hundreds of people who were dying, his thoughts about the end of life might be misguided: "A continuously intense life can be exhausting. Keith [a patient] had no bucket list of activities to complete before he died. He longed for a minute that didn't matter: perhaps for time to take a nap or watch something silly on television without feeling guilt or regret. He needed relief from the feeling that he was wasting precious time, not the added pressure of life's greatest to-do list. I now realize that humans require down time. Quiet time is necessary to process all that happens to us on a daily basis - let alone over the course of a life." "
          - Books for Living by Will Schwalbe

Of course, napping and resting are necessities for us, but the lesson still holds true: it's not only OK to slow down and do nothing, it is necessary and rewarding. This fits together well with the first quote I posted, above, about Slowing Down. It's again a lesson that I need to learn from because I often resent having to interrupt my day to nap, and the better I feel, the more I revert to that "continuously intense life," with the result that I feel overwhelmed and pressured (and later, exhausted). Instead, I need to embrace my down time and my daily nap and recognize that they are valuable to me as a person and not just necessary for my sick body.

From the chapter on Giovanni's Room by James Baldwin, on the lesson of Connecting:
"Shortly after reading Giovanni's Room, I would come across a quote from Baldwin:

You think your pain and your heartbreak are unprecedented in the history of the world, but then you read. It was books that taught me that the things that tormented me most were the very things that connected me with all the people who were alive, or who had ever been alive."
          - Books for Living by Will Schwalbe

I think we can all relate to this. At the beginning of my illness, my pain and heartbreak isolated me, but then I began reading books written by others with ME/CFS, and I felt connected. I sobbed while I read my first memoir by someone else living with this illness because he was describing MY life. Until then, I thought I was alone; I didn't think anyone on earth could possibly understand what I was going through.  Later, reading blogs and "meeting" others with ME/CFS online provided that same sense of connection. In this way, books can not only entertain us but connect us to others in a way that is, sometimes, life-changing and life-saving.

I know this is a long post...but it could have been much longer! I included here only a few of the dozens of inspirational quotes that I tagged in my copy of Books for Living, and I highly recommend the book. The short, individual chapters, each covering a different book and lesson, make it easier for those with cognitive dysfunction to read because you can manage it in small bits at a time. Or you might try it on audio if you struggle with reading.

How about you: what lessons have YOU learned from books?


Tuesday, May 16, 2017

TV Tuesday: Coming Up in Summer 2017

(NOTE: you can link to my past reviews of all of these shows at the links provided below).

It's that time of year again - that between-seasons time on TV. Most of our favorite spring shows have wrapped up for the season (or will soon): The Americans, Blindspot, The Catch, Quantico, and Colony. I have also recently finished up several of the shows I watch on my own during lunchtime: American Crime, No Tomorrow, and Chewing Gum.

My husband and I are filling our evenings catching up on our favorite streaming shows: Bosch, Catastrophe, and Lilyhammer. And I suspect we will be watching a lot of movies through the rest of May!

But what's up next?

Here's a sneak peek at some of our summertime favorites, with the dates they come back, plus some new shows we want to check out...and a couple of sad cancellations!

We might as well get the bad news out of the way: 

NBC has cancelled Aquarius, the crime show about Charles Manson in 1969, starring David Duchovny as an LA detective. It won't be returning for season 3. If you missed this show, you can watch season 1 for free on Netflix or catch both seasons on Amazon Prime for $1.99 an episode or $21.99 a season. It was excellent. You can see my review here.

It looks like BrainDead won't be coming back, either, but it's one season last summer was original and hilarious and very much worth checking out. It's free on Amazon Prime (at the link), and you can read my review here.

I enjoyed Feed the Beast last summer, but AMC cancelled this drama starring David Schwimmer after just one season.

And Fox seems to be still on the fence about Wayward Pines, a show that my husband, son, and I all enjoy. No word yet on whether there will be a season 3.

Here's what we are looking forward to and when the new seasons premier:

June - The Last Ship, season 4 - I couldn't find a specific date, but this excellent post-apocalyptic action drama is supposed to return in June.

June 4 - The Next Food Network Star - my guilty pleasure when I get an hour to myself at lunchtime!

June 4 - Fear the Walking Dead - I'm not so much into zombies, but my husband & son will be tuning in again.

June 5 - Stitchers, season 3 - my husband and I enjoy this unique blend of crime show and sci fi

June 9 - Dark Matter, season 3 - another sci fi show we enjoy

June 9 - Orange is the New Black, season 5 - We can't wait!! My husband and I LOVE this amazing prison drama that is one of the highest-quality TV shows ever. Season 4 ended with a giant cliff-hanger, so we are on pins and needles waiting to see what happens next. The best news? Netflix has renewed the show for a total of 7 seasons!

June 10 - Orphan Black, season 5 - BEST. SHOW. EVER. Seriously, this show is amazing in every way - my husband, son, and I love it. If you haven't seen it yet, you are missing out! Check out my review at the link and catch up (details at the end of my review on where to find it). This will be the final season.

June 28 - Younger, season 3 - one of those shows I like to watch by myself (in my male-centric home!) when I get some time alone. It just gets better & better.

A couple of notes:

Two past summer shows have moved to fall 2017 premier dates for their new seasons: Mr. Robot (10/1/17) and Stranger Things (10/31/17 - perfect) - can't wait!

New shows we want to check out in summer 2017:

 The Mist is based on a Stephen King short story and will air on Spike starting June 26. The trailer (below) looks like it might be a bit violent for me, but I am willing to give it a try. It reminds me a bit of Under the Dome, another TV show based on a Stephen King novel, and it looks like something my husband will definitely like.

Gypsy is starting on June 30 on Netflix. It's a thriller series about a psychologist who gets too close to her patients - looks and sounds very creepy!

Salvation begins on CBS on July 10. It's a sci fi thriller about an asteroid on a collision course with Earth in six months. Looks like a good one!

The Sinner will premier on USA Network on August 2. It's based on a best-selling thriller novel about a young mother who commits horrific acts of violence and has no idea why, starring Jessica Biel. Another one that looks violent but also compelling.

Whew, that's quite a line-up for summer!

What new or returning shows are you looking forward to this summer?

And please let me know if you have any recommendations for shows we can stream (on either Netflix or Amazon Prime) during May, while we wait for all these great shows to start!

Monday, May 15, 2017

Movie Monday: Arrival

Every once in a while, a book or movie just so blows me away that I am tempted to write a one-sentence review: "You must read this book/see this movie!" That's the case with Arrival, a movie my husband and I watched Saturday night and that I have wanted to see ever since its release to theaters last November. It more than lived up to my high expectations.

Arrival focuses on a linguist named Louise Banks, played wonderfully by Amy Adams, who lives by herself and teaches at a university. As the movie opens, we see her at home and at school, with a voice-over addressed to her daughter about beginnings and endings while we see images of her with her daughter, from her birth to her premature death from an incurable disease as a young woman. On this day, though, Louise doesn't even get to begin her class on languages because a worldwide crisis has occurred that has the attention not only of her students but of everyone else on the globe. Twelve identical-looking alien ships have arrived on Earth in various, wide-ranging locations. They are just hanging there, in mid-air just above the Earth's surface, with the whole world wondering what they want and why they are here.

Colonel Weber, played by Forest Whitaker, comes to Louise's office. He's familiar with her talents in linguistics because she previously worked on a military project with him, helping to translate in a difficult situation. He's come to her now because the U.S. military is looking for a linguistics expert to try to communicate with the aliens and find out what they want from humans. She quickly packs a bag and is raced to the site of the alien ship, in Montana. There, she is joined by Ian Donnelly, played by Jeremy Renner, a theoretical physicist. Each of them is given a team of specialists to guide, and the pair are quickly taken to the alien ship to "meet" their visitors up close.

I won't give away any more because this movie is filled with fascinating, breath-taking twists and turns. Suffice it to say that, as you might expect, the aliens have an entirely different way of communicating than humans do, and learning to converse with them is a serious challenge. Adams, Renner, and Whitaker are all excellent in this film, and it is filled with suspense, as the scientists race against time.

As a science fiction movie, Arrival is wonderful, with truly creative and unique aliens and alien technology and language. But that is only the tip of the iceberg. This is mainly a movie about humans and about communication. As Louise and Ian struggle to communicate with the aliens, all kinds of miscommunications occur between the humans located around the globe, all working on the same project. In addition, Arrival delves deep into issues of memory, time, and what it means to be human. Toward the end, you encounter some truly mind-bending surprises that are wonderfully thought-provoking - something I always enjoy in a movie.

I absolutely loved this unique and thoughtful movie that is also suspenseful, and my husband did, too. I was disappointed that our DVD didn't contain any extras because I wasn't ready to leave this world, but I later read that you should patiently wait after the end of the movie because there is a "making of" documentary that rolls after the credits. I wish I'd known that before! I could watch the whole movie over again today.

You must see this movie!

Arrival is now out on DVD (we rented from Redbox) and is available from Amazon to rent for just $3.99 (or you can purchase the DVD).


Sunday, May 14, 2017

NOW Is the Time...To Order Probiotics!

My stock of probiotics for the summer
This week, box after box arrived at our house loaded with dozens of boxes and bottles of various probiotics. So, what's the deal? Is the apocalypse coming soon? I sometimes think that after watching the morning news, but no, that's not why I bought so much probiotic all at once. It's because summer is coming! Every year at this time, I stock up on all of our probiotics and buy enough to last us until mid-September.

The reason is that those little probiotic capsules contain live cultures; the tiny bacteria inside need to be kept alive in order for them to remain effective (probiotics are the "good bacteria" that live naturally within your gastrointestinal tract). The bacteria will die under high heat, so it is best to store them below 70 degrees F (and absolutely below 80 degrees). In fact, most strains of probiotic are quite fragile and must be stored carefully. Even properly stored, probiotics will gradually lose their effectiveness the longer you keep them. So, my summertime strategy might not be ideal - buying so much at once and storing it - but I think it's better than having probiotics delivered when the temperature is in the 90's (probably higher in warehouses and trucks), and I have no control over shipping conditions. After what I have read today while preparing this post, I will be keeping my stock in our extra fridge downstairs for the summer, rather than storing them at room temperature like I usually do.

Locally bought & kept in fridge
An alternative approach, which I also use, is to buy your probiotics locally, somewhere where they are kept refrigerated. We buy one of our brands of probiotics this way, at our local natural foods store, and I keep it in the fridge at home, as shown here. They tend to be more expensive in our local store than online, but the store sometimes has sales.

So, why should you take probiotics in the first place? They are really essential for anyone with ME/CFS or any kind of immune disorder. First, they help to support the immune system. Did you know that 80% of your immune system resides within your gastrointestinal tract? So, with the immune dysfunction at the heart of ME/CFS, all of us should take some good quality probiotics, with a variety of strains in them. Another factor that makes probiotics even more important is that many of us - including my son and I - have developed yeast overgrowth, either due to the immune dysfunction or to over-use of antibiotics or both. Taking high-dose, high-quality probiotics is a key part of treating yeast overgrowth (which needs to be treated because it can make you feel awful). And finally, anytime you (or anyone else) take antibiotics, you should double up your daily probiotic dose. Those antbiotics will kill off all of the bacteria in your system, including the good ones in your gut, so they need to be replenished.

One final note: if you are diary intolerant (as are 30% of ME/CFS patients), then be sure you are buying probiotics that are not dairy-based. It should say right on the label. As for yogurt, it does contain some active cultures and can be a good source of probiotics for those who can eat dairy; however, it's hard to tell how much probiotic you're getting, some studies show that the probiotics don't all survive (they get gobbled up by other bacteria in the yogurt), and be aware that most yogurts contains loads of sugar, so stick to plain types.

So, come up with your own summer strategy for probiotics. Will you order now and store them in the fridge (or anywhere cool, dark, and dry) this summer? Or buy locally where they are kept refrigerated? Maybe order some now and then buy locally refrigerated types toward mid-summer? However you decide to proceed, make sure that the probiotics you do buy are stored properly and kept away from heat, light, and humidity. Otherwise, all that money is wasted...and more importantly, you won't be getting any benefit from them.

For more information, this article is very informative and includes references at the bottom to scientific studies for further reading. Note that the article is on a probiotic brand's website, so the last two paragraphs include a sales pitch, but the rest of the article is purely informative (also note that our dietician told me that this type of SBO - soil-based organism probiotics - are not a good choice for us, but it might be different for you).

The links below show the probiotics that we take now or have taken in the past. Our dietician helped us come up with this multi-strain approach. The Saccharomyces boulardii is a strain that is specific to yeast, which is why we take so much of it. The Renew Life Ultimate Flora (also available through Amazon, as shown below) is the one that we buy locally, in our health food store; it contains 50 billion units. Xymogen products, like the ProBiomax DF 30, can be purchased directly through Xymogen. Also note that Culturelle is a common probiotic, found in any drugstore or grocery store; however, we buy the Health & Wellness type, which has 15 billion units in each capsule (their other, more common type is labeled Digestive Health and has only 10 billion units) - the Amazon link below is an excellent price on this type of Culturelle - well below what you will find in local stores.

I'm interested to hear what your probiotic strategies are, especially in the upcoming hot months, and which brands you have found to be most effective?

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