Take Action NOW!

U.S. Patients:

 

Take a few minutes NOW to send an important message to your Senators, asking them to vote for a current action that would almost DOUBLE the money appropriated for ME/CFS - a much-needed increase of our meager funding. It only took me moments (and I added a brief personal statement, which is not required), so act now! The vote is later this week - let's all let our elected officials know how important this is.

 

Use this link for a simple form that will look up your Senators for you and quickly send them a message, with all the pertinent information included (and an option to add a personal message).

This is a chance for our voices to be heard, even from our beds and couches!

Weekly Inspirations: Nature Provides Peace and Healing

The blog has been quiet for awhile because I had a nasty bout of bronchitis that wiped me out and lasted four weeks, and...we spent last week on a camping vacation. It was the first full week of vacation we've had all year, due to illness, family crises, weather, and family funerals out of state, so we REALLY needed a break! Our camping vacations are more than just a break from normal routine, though. My husband and I both find that time spent in nature is rejuvenating and healing. It provides a sense of peace and tranquility we just can't find in the midst of our busy lives and the ever-connected modern world.

I've written here many times about the positive effects of spending time in nature - because it is a truth I keep rediscovering! I also wrote an article for ProHealth, The Restorative Power of Nature, that includes the research on the benefits (both physical and mental) of spending time in nature and how YOU can manage more time in nature, even if you are severely limited by your illness - even if you can't go outside! My article seems to have gotten missed when ProHealth redesigned their website recently, but you can read the full text at the link, in a previous blog post.

This past week, we spent almost all of our time outdoors, since we were camping, and both campgrounds we visited were mostly quiet (we did get some rowdy neighbors one night!). We stayed at Clarence Fahnestock State Park in New York's Hudson River Valley - a huge eye-opener for us! We'd never visited this beautiful region before, and we were stunned by how picturesque and undeveloped the Hudson River is (north of NYC). Our second stop was at North-South Lake in the Catskills, which is so far up into the mountains and remote that there was no cell service for miles!

Best part of camping - reading by the campfire

I find that there are two different ways to experience nature. One is in the larger sense, when you appreciate a stunning view of a natural landscape, and it stops you in your tracks. We experienced that this week both in the beauty of the Hudson River from overlooks and a pedestrian bridge and in the peace and tranquility of North-South Lake, especially at dusk and sunset, with almost perfect silence, other than sounds of nature, and heart-stopping natural beauty.

View of the Hudson River from Walkway Over the Hudson in Poughkeepsie, NY

View of the Hudson River from an overlook (West Point is downriver on the other side)

Breath-taking view of the surrounding landscape from an overlook in the Catskills (can see 4 states!)

North-South Lake at sunset - perfect peace

The other way to experience nature is in a smaller sense, up close and personal. Listening to bird song, crickets, and the wind in the trees brings instant calm and allows you to slow down and tune in to the natural world around you. When we are camping, we notice everything around us - wildlife, plants and trees, blue sky and clouds, and the star-filled sky at night. Although we notice a lot when hiking or even just sitting around our campfire, we both find that kayaking is one of the most peaceful, nature-soaked things to do. Floating out on a calm lake with nothing around but nature makes you notice the birds flying by, reflections in the water, cloud patterns above, and the flora and fauna both in the water and on the surrounding shores. It provides a perfect calm, especially at the end of the day. if you can't manage kayaking yourself (I can now, after treating OI), ask a friend or family member to take you out in a tandem (for 2) kayak, canoe, or other boat.

Floating on the lake at dusk, soaking in the peace & tranquility

First signs of fall color

Water lily and lily pads

A duck friend floating by

If you think you can't enjoy any of this...you can! First, check out my tips for Camping and Enjoying the Outdoors with ME/CFS, based on our almost two decades of continuing our outdoor time in spite of my illness (when our sons were younger, three of us had ME/CFS, but we never gave up our camping traditions). There are lots of ways to accommodate your limits so that you can enjoy time outdoors. And, you can also do what we did and work to improve your condition so that you can do even more outdoors. Here is a summary of the treatments that have been most effective for me and my sons over the years, allowing us to be more active and feel better, with fewer crashes.

And, as I explain in that ProHealth article above, even if you are so severely affected that you can not leave your home, you can still enjoy the benefits of nature. On my bad days, I lie in a zero-gravity chair out on my back deck or porch. Leave the electronics inside and just tune in to what you can see, hear, and smell around you. The physical and emotional benefits are real. Even if you can't go outdoors, studies show similar physiological benefits from looking out a window (open, if possible, so you can also listen, but through glass works, too), or...just looking at photos of nature on a screen has similar benefits! So, I hope you have enjoyed the photos I included here (click any of them to enlarge). You can also try this playlist from TED called Sounds of the Wild, a collection of talks filled with pictures and sounds of nature. This TED Talk, Nature. Beauty. Gratitude. includes gorgeous nature photography. And this TED playlist, Reconnect with Nature! provides lots of inspiration on ways to enjoy nature, along with more beautiful photographs.

We are back from our trip now, reconnected to the world (and with 500 unread e-mails waiting for me!), but this morning, I am writing this in my reclining chair out on our porch, listening to the sounds of the birds and the breeze through the surrounding trees. Give it a try - even just 10 minutes in nature (or looking at nature!) will make a difference in your life. I am newly committed to getting outdoors every day, even if it's just to my back deck.

My back deck provides close-by nature (but leave the laptop inside!)

Movie Monday: The Art of Racing in the Rain

Although I didn't remember all the details of the plot, I remembered reading The Art of Racing in the Rain by Garth Stein about ten years ago and loving the novel. In preparation for the movie adaptation, my husband read the novel last month, and we invited our good friends (who had not read the book) to come with us to see the movie version, The Art of Racing in the Rain, in the theater a couple of weeks ago. All four of us loved the movie, and - like the book - it made us both laugh and cry (yes, all of us!).

This unique story is narrated by a dog named Enzo. Now, stick with me here, because this isn't my usual kind of thing, but this is an extraordinary dog and an extraordinary story. As Enzo, voiced by Kevin Costner, explains early on, he believes that dogs that are ready and have learned enough will be reincarnated as humans (he saw this on a documentary about Mongolian beliefs), and so, his goal is to learn enough about being human to take this important next step. As a puppy, he was adopted by Denny, played by Milo Ventimiglio, and named Enzo (after the Italian racer and founder of Ferrari) because Denny is a racecar driver. The two immediately bond, and Enzo often comes to the track with him and watches racing on TV with Denny, both televised races and recordings of Denny's own races, as Denny imparts his wisdom about racing. Enzo's not too sure what to think when Eve, played by Amanda Seyfried, comes along, but soon they are a close-knit family of three - and eventually, four, when Zoe is born. Life is idyllic for all of them for a while, until tragedy strikes. Through it all, Enzo remains loyal and steadfast to Denny and the rest of his family. It's no spoiler to say that Enzo does die in the end because of course, dogs don't live as long as humans do and also the movie begins with Enzo's imminent demise, as Enzo looks back and tells the story of his life.

So, let's deal with that first. When I told our friends it was a movie about a dog, knowing they are dog lovers who own two dogs themselves, my friend asked, "Is it sad?" I explained that, yes, there are some sad parts in the movie but that it also has moments full of joy and plenty of laughs, too, so they agreed to come see it with us. As I said, all four of us loved the movie, and yes, all of us cried, but we all laughed a lot, too. It's a story about life, with all of its ups and downs, joys and sorrows, so it makes you feel, and what more can you ask from a story? My husband and I thought the movie adaptation was very well-done. He had read the book much more recently and pointed out a few minor changes from book to movie, but overall, the movie sticks pretty closely to not only the plot points of the book but also its emotional feel. The all-star cast did a great job, though, of course, Enzo is the real star of the show. This is a wonderful movie for most ages, though I would be cautious with younger kids who might not be comfortable being confronted with the realities of death. But for teens and adults, it's the perfect movie for different generations to enjoy together - or friends, as we did. Any movie that can make you soar with joy and sob with sorrow, all in less than two hours in a darkened theater, is a winner in my book.

The Art of Racing in the Rain is currently playing in theaters, though probably not for much longer. You can look up local theaters and times (go for recliner seats!) and/or buy tickets at Fandango:




It is tentatively scheduled for release on streaming through Amazon and on DVD in November 2019. It can be pre-ordered now.

TV Tuesday: In the Dark

Sorry for the lack of posts this past week. I have been battling a nasty case of bronchitis that hit me like a freight train. I caught it from my 94-year old father-in-law, and as always with ME/CFS, it has hit me hard, though I got on antibiotics right away, knowing my history! I am feeling just a little bit better today - able to sit up at least - so I thought I would attempt a quick TV review.

Serendipity worked in our favor recently. We've had a dearth of summer TV this year, and we finished several shows we were enjoying on streaming services. A show we'd never heard of popped up on Netflix right when we were in the mood to try something new - In the Dark - and it turned out to be a real winner! This mystery/thriller about a blind woman with a serious attitude problem is suspenseful and compelling but also funny - a perfect combination for us!

Murphy, played by Perry Mattfeld, is a blind woman with a serious chip on her shoulder. She was an unwanted foster child for many years, finally adopted by loving parents, Joy, played by Kathleen York, and Hank, played by Derek Webster. They love her dearly, in spite of her prickliness, though they are over-protective even now, when she is a grown woman. They opened up a business training service dogs, where Murphy is employed, though she doesn't do much there or take the job seriously. She is, though, beginning to bond with her own service dog, Pretzel, even if she doesn't like to show that affection openly. Murphy has only opened up to two people and allowed them to get close. One is her roommate, Jess, played by Brooke Markham, who works as the veterinarian at the dog training school. The other is an unlikely friend, Tyson, played by Thamela Mpumlwana, a teenaged black boy who works in the alley near her apartment building selling drugs for his older cousin, Darnell, played by Keston John. Murphy has a habit of smoking cigarettes in that alley and, against all odds, she and Tyson starting talking one day and became good friends. She also has a habit of getting drunk in a local bar, and one night, heading home from the bar, she stops for a cigarette in the alley and stumbles over Tyson's prone body. She kneels down and feels his face and is certain he is dead. By the time the police are called to the scene, though, Tyson's body is no longer in the alley, and all they have is the word of a drunk, blind woman. Despite their insistence that there is no evidence of a crime and Tyson probably just ran away, Murphy begins hounding the lead detective, Dean (or That Cop as he is labelled in Murphy's phone), played by Rich Sommer, one of our favorite supporting actors from Mad Men and GLOW. Murphy continues to do her own investigating of the crime, as the police mostly ignore it and the tension and danger grow.

There is so much depth to this show that it's difficult to write a brief synopsis. Yes, it's a mystery/thriller about what happened to Tyson, but the show is also very much about Murphy's unique character and her relationships. During the course of the first season, she develops her first-ever dating relationship (she's generally more into angry, anonymous sex with strangers) and shows a softer, kinder side when she meets Detective Dean's teen daughter who is newly deaf. Viewers also learn more about her friendship with Tyson and what else was going on in his life before this incident. Add to that, drug dealers, criminals, real danger, and a complex mystery, and you have a first-rate show. The acting is excellent all-around, though Mattfeld as Murphy is outstanding, playing her complex character perfectly. Finally, despite the serious subject matter and depth of emotion, this show is also really funny at times! Several shows we have watched this summer were just unrelentingly dark, but we love when a show can combine humor (perhaps dark humor!) with the suspense and action - it just makes it so much more entertaining.

So far, we have watched seven episodes of the thirteen episodes in season one, and I was excited to see that a season two is planned as well! A CW show, episodes 9 through 13 are currently available at the CW website. The entire first season is available on Netflix, and it is also available on Amazon for $1.99 an episode or $14.99 for the first season. Season 2 is planned to run on the CW sometime in 2020 - no release date has been announced yet. We are really enjoying season 1 and can't wait for more.

In this brief trailer, you get a good idea of Murphy's prickly personality (to put it mildly!), her special friendship with Tyson, and both the suspense and the humor of the show.

TV Tuesday: The Widow

Adrift without any of our favorite On Demand shows on network or cable this summer, my husband and I have been trying out some new shows on streaming (we have Netflix and Amazon Prime). I recently wrote here about Hanna, which we both loved, so we decided to try another new show on Amazon, The Widow, a fast-paced thriller that we both enjoyed.

Kate Beckinsale plays Georgia, a widow living a solitary life in a remote corner of Wales and still clearly grieving over her husband's presumed death three years earlier in the Democratic Republic of Congo (DRC), when a plane crashed and everyone on board was killed. She sees a news story about a riot from DRC on television, and becomes certain she spotted Will, her husband, on the streets. She flies to DRC herself and connects with one of Will's old colleagues, Judith (played by Alex Kingston, one of our old favorites from the days of ER), in the aid organization where he used to work. She also contacts Emmanuel, played by Jacky Ido, whose wife was also killed on that same flight; the two got to know each other in the days after the crash, while waiting for news of its victims. No one else believes that Will is still alive, but Georgia's friends offer to help her, as she follows leads through DRC and Rwanda. She quickly zeroes in on Pieter Bello, played by Bart Fouche, another person she met in the days after the crash, who seems to be somehow involved. Meanwhile, the audience sees flashbacks and present-day scenes of exactly how the plane crashed (hint: not the way it was reported) and that there was one survivor, Ariel, a man from Iceland, who kept his survival a secret because he knew too much about the crash. Georgia follows clues across central Africa, while one dangerous secret after another is revealed.

We both enjoyed this action-packed international mystery-thriller that is something of a mini-series, telling a complete story in just eight episodes. It's one of those stories that is built on a house of cards of lies, secrets, and illegal activities, so there is plenty of suspense that kept us coming back every night to find out what was going on and what really happened to Will. The acting is good, we liked the characters (except the ones we were meant to hate), and we enjoyed the unusual setting, in places we personally know little about. Some of the motivations and explanations for characters' actions seemed a little far-fetched to us, but we went with the flow. On the other hand, there is a very moving plotline about child soldiers, with an outstanding performance by a young girl, Shalom Nyandiko, that we both found very powerful and well-done. There are lots of surprises in this twisty and entertaining thriller, and we enjoyed this short series filled with adventure and suspense.

The Widow is an Amazon Prime original, so it is available only on Amazon, free with a Prime membership.

Movie Monday: Once Upon a Time in...Hollywood

My birthday gift from my son was lunch and a movie, just the two of us, so we planned a day off last week, before he starts his senior year of college and things get hectic. Since I need to nap in the afternoon, we went to a 10 am showing at a local recliner theater. It was decadent seeing a movie right after breakfast (and having popcorn in the morning)! We saw Once Upon a Time in...Hollywood, and we both loved it, in spite of our different ages and experiences. It has been called Quentin Tarantino's love letter to old Hollywood, and it is that - and a whole lot more.

Leonardo DiCaprio stars as Rick Dalton, an actor who has made his career mostly in westerns and other action thrillers, including as the star of a TV western called Bounty Law. Now, he is worried that the best years of his career are over and is upset when director Marvin Schwarz, played by Al Pacino, suggests he move to Italy to star in a "spaghetti western." Rick's best friend and stunt double is Cliff Booth, played by Brad Pitt. Their careers rise and fall together, though Rick is a well-known star, and no one knows who Cliff is, but that doesn't seem to bother the easy-going, always-grinning friend. The two hang out at Rick's house, which is next door to the home of director Roman Polanski and his wife, actress Sharon Tate, played by Margot Robbie. For now, Cliff is driving Rick around town, and Rick is trying to get Cliff hired as his stunt double, though Cliff's reputation gets in the way. One day while Rick is working, Cliff picks up a pretty hitchhiker named Pussycat, played by Margaret Qualley, and drives her to where she lives, at the Spahn Ranch, which had been rented out for many western movie and TV sets in the past, including Rick's Bounty Law. Since Cliff knows the place, he wants to look around and say hello to the owner, George Spahn, but the ranch is now the home of Charles Manson's "family," and they are not happy about this stranger poking around. As Rick and Cliff continue with their lives, tension builds with Manson and his family in the background.

We both loved this movie, though as my son whispered to me during the first half of it, "this isn't like the usual Tarantino movie!" He was referring to the graphic violence that Tarantino is known for in films like Kill Bill, Pulp Fiction, and Django Unchained. And he's right...until the last scene in the movie, and then we said, "oh, yeah, this IS a Tarantino movie!" But for much of the film, the renowned director has recreated the Golden Age of Hollywood in a way that completely immerses you in the darkened theater (this is a great movie to see on the big screen) with the sights and sounds of 1969. Sure, he's got the cars and fashions, but he goes way beyond that, with classic Hollywood places, billboards, and neon, plus the sound background of 1969, not just in the music in the soundtrack, but in ads heard and the patter of the radio DJ playing songs barely remembered while Cliff drives around town in his car. It's all just so much fun. Of course, most of us remember what happened on August 9, 1969, and the presence of Charles Manson and his crew provide an ominous threat behind the scenes, but Tarantino has some unexpected and clever surprises in store for the audience.  And, of course, the all-star cast is just outstanding, especially DiCaprio and Pitt. Besides the actors I mentioned above in major roles, there are plenty of other big-time stars in minor roles, including Kurt Russell, Dakota Fanning, Bruce Dern, and Luke Perry in his last role. In addition, many Hollywood stars of the time are depicted, like Bruce Lee and Steve McQueen. The historical aspect was lost on my son (though I filled him in a bit), but we both still thoroughly enjoyed every minute of this engrossing, funny, gripping two-and-a-half hour immersive experience that left us with smiles on our face and still talking about the movie days later. Highly recommended. Oh, and be sure to hang around for the credits for a bonus scene.

Once Upon a Time in...Hollywood is currently showing in theaters. You can check for local showtimes and locations and buy tickets (go for those recliner seats!) through Fandango:




You can also pre-order Once Upon a Time in...Hollywood on streaming and DVD (both due out sometime in mid-fall) through Amazon.And don't forget that fabulous movie soundtrack, which includes both music and classic ads and is available now (you can listen to a sample of the album at that link).

Weekly Inspiration: From Other Chronic Illness Bloggers

I've been seeing so many inspirational posts from other chronic illness bloggers this week that I wanted to share them. There is a wealth of experience and knowledge and understanding here for all of us...and maybe you'll discover a new blog that you like!

True Friends in Unexpected Places
If you have lost old friends due to your chronic illness (as most of us do, sadly) or feel a lack of meaningful connections in your life, check out the excellent post at My Medical Musings about friendship and creating new connections in your life. Like the author, I, too, have started discussion forums and support groups in order to help others but have also gained new friendships and support myself. It's an inspiring post.

And if you need help in exactly HOW to find others in similar situations that you can connect with, both locally and online, check out my own article on ProHealth: Birds of a Feather: The Joys of Community, with the story of how I started a local support group and how you can find others to connect with, online and in real life.

The Five Stages of Grieving Your Diagnosis
For those still in the early days of chronic illness or who have maybe just recently received a diagnosis, Teena over at Whoa Mumma has a great post on the stages of grief, as they apply to chronic illness. Take a look at her wonderful explanation of the natural process of grief in those with chronic illness. One thing I would like to add to her beautifully written post is that these stages don't always happen in this order, and they can recur at unexpected times, even years after you are well into the Acceptance stage. As an example, I wrote this post on Mourning Losses a full 10 years after I first became ill and many years into my settling into a "new normal" and fully accepting my new life of restrictions. That's just the way grief works, and chronic illness is no exception: everyone's path is different, and a stage you finished with long ago - like anger or depression - can still take you by surprise years later. It's OK, it's normal, and you will return to your usual place of acceptance when you are ready.

Chronic Illness and Grief
A Journey Through the Fog, an ME/CFS blogger, has also written about grief this week, in her post on Chronic Illness and Grief. She writes of her own personal journey toward acceptance, including how memories and photos of "the old days" can sometimes be depressing, the emotions she's experienced as part of the grieving process, and the particular grief in losing control over your life and losing income when you can no longer work. A few years ago, I also wrote a Weekly Inspiration post about Acceptance, with some quotes that I found inspiring.

Asking for Help (and Why Everyone Needs to Learn This Important Life Skill)
Finally, A Chronic Voice (one of my favorite chronic illness blogs) has written a very important post about Asking for Help, and I agree with her that we all need to learn this skill...and get over our hang-ups about it. This was SO hard for me at the beginning - and still is to some degree - because I was used to being independent and hated the loss of control and needing help. Luckily, I had some amazing friends who didn't wait for me to ask but just helped me. I have learned over the years that most friends and family DO want to help you, but they don't know what to do and feel uncomfortable asking. That's why this life skill - asking for help - is so important. Check out A Chronic Voice's blog post on this topic, with plenty of inspiration and practical tips, too.

I hope you enjoyed this journey around the Blogosphere today! There are so many wonderful chronic illness bloggers out there, sharing their insights and experience. It is truly inspiring. For more links to chronic illness blog posts, check out the Chronic Illness Bloggers page on Facebook.

And please share your own favorite inspirational links in the comments section!

TV Tuesday: Hanna

Earlier this summer, without much of interest on cable, my husband and I turned to streaming and finally watched Hanna, an Amazon Prime show he'd been bugging me to try. He was right - it was amazing! This unique and suspenseful show was engrossing, and now we can't wait for season two.

In the opening scenes of Hanna, Eric, played by Joel Kinnaman, rescues a baby from some sort of isolated institutional facility in Romania. He tries to escape with a woman (clearly, the baby's mother), but the car is blown up. We next see Eric living in a cave in the woods with a teenage girl named Hanna, played by Esme Creed-Miles. He has brought her up there, in the middle of a deep forest in Romania, and is training her intensely: for strength, agility, self-defense, and even in multiple languages. The two have formed a father-daughter bond. One day, Hanna ignores his frequent warnings and goes further than she's ever been allowed to go before. She meets another person (she's never seen anyone but Eric before), a teen boy working in the lumber industry, helping with his dad's business. Hanna begins to experience normal life for the first time, including her first taste of Snickers(!), but her journey outside their boundaries attracts some unwanted attention. Soon, there are military-types after both she and Eric, and they are each forced to go on the run separately. Eric has drilled her as to what to do in this sort of situation, so Hanna is curiously adept at fleeing through various countries and evading capture, though sweetly naive in just about everything else. A woman named Marissa, played by Mireille Enos, is an ex-CIA agent heading up the forces looking for the two runaways, as she tries to cover up something from her past.

Hanna oddly combines a sci fi-type thriller with a funny coming-of-age story, but it works beautifully. The stories of Hanna's beginnings, why she is unique, and who is after her are revealed gradually throughout the first season. She and Eric, both separately and together, are chased all over Europe (and a bit of Africa, too) by Marissa and her team, as Eric scrambles to make contact with old friends and get some help. Many of the episodes are action-packed and suspenseful (and sometimes quite violent), but there are also sweet and often hilarious scenes of Hanna experiencing the outside world for the first time, making her first friend, and testing out what it feels like to be a normal teen-ager. All of the acting is excellent, and it's wonderful to see Enos and Kinnaman back together on screen (though on opposite sides now) - we loved the duo in The Killing (another great show). But Creed-Miles steals the show as Hanna, giving an intense performance where she is alternatively scary strong and sweetly innocent. In all, it is highly entertaining and wholly addictive. We were hooked after the first episode and can't wait for a second season.

Hanna is an Amazon Prime original, so it is only available on Amazon (note that there was also a movie based on the same basic framework called Hanna from 2011, but the link will take you directly to the new TV show).

Weekly Inspiration: Grateful People Are Joyful People

I have often written here on my blog about gratitude; it's not a new concept to me but something I have embraced as an integral part of my life. I have written blog posts about Finding Joy in Every Day and my Joy Journal. I shared with you my daily #GratefulToday practice, posting almost every day on Twitter and on my blog's Facebook page what I am grateful for and encouraging others to join in (and I have learned that the more difficult it is to come up with something, the more necessary and helpful the practice is!). So, I consider myself well-educated in the importance of gratitude in my life...but yesterday, I was reminded there is always more to learn!

I was visiting and reading other chronic illness blogs (this Facebook page lists loads of great chronic illness blog posts) when I came across My List of Little Joys by Cassie Creley - go check out her post! Cassie writes about how it's been a rough summer for her, with respect to her chronic illness, but then she looks back on the past few months and lists some of the small joys she has experienced. Even though I often write about gratitude and write my daily #GratefulToday post, I realized there is value to a larger look back like Cassie did. This really hit me because I, too, have considered this a rough (perhaps miserable?) summer, with excessive heat I can't tolerate, a lack of outdoor time or travel, and several serious family crises. Despite my generally good outlook, I have been thinking how awful this summer has been and how I can't wait for it to be over. Cassie's post made me realize I am drifting into negative thinking and forgetting to be grateful in a larger sense, even if I take a few moments each day to think about it.

So, inspired by Cassie's post, here are some of my own Small Joys from this summer so far:

• We cleaned out our screened porch Memorial Day weekend, I bought some inexpensive pillows and plants to spruce it up, and we have been enjoying it all summer.

• We bought a new-to-us truck to replace our rapidly failing one. Our old truck was much loved and gave us 217,000 miles and lots of memories, but it's nice to have one for trips where everything works!
• I have been working on two books about chronic illness and have made some important steps this summer - I hired a cover designer and love the final cover, and I found an editor I worked with years ago who is the perfect fit. I finished my part of the editing process and turned the book over to her, which was a huge step forward.

• We have enjoyed an evening out with friends most weekends.
• I saw two great movies: Rocketman and Yesterday - I am VERY grateful for movie theaters with full recliner seats!
• Although our son's decline this spring has been the source of much stress and worry these past few months, we are starting to see signs of improvement from all the new treatments, slowly but surely. Every time we see him smile, hear him laugh, enjoy a meal with him where he's able to enjoy his food, or see him go out with friends, my heart soars, and I feel hugely grateful.
• We enjoyed a nice trip to my hometown of Rochester, NY, to visit with family and attend a family reunion - the whole weekend was relaxed and enjoyable.

• My Big Book Summer Challenge! Every summer on my book blog, I host a reading challenge for reading books with 400 or more pages, and I SO enjoy it. I love finally tackling some of the bigger books on my shelves I don't usually have time for, and I love talking to others about the Big Books they're reading, too (there's still time to join and fit in a Big Book or two before September!).

• My husband and I have been enjoying our favorite summer TV shows, like Imposters, Instinct, Bosch, Sneaky Pete, and Travelers - and now Orange Is the New Black is back for one last season - yay!
• We enjoyed a nice little getaway this week with old friends, camping at a beautiful state park filled with waterfalls. It was nice and cool up on the mountain, and we hiked, kayaked, enjoyed good company, and laughed a lot.

Huh, so maybe it hasn't been such a bad summer after all! Seeing all of these joys listed together like this reminds me that it hasn't been all doom and gloom (and heat).

For one more take on gratitude, check out this TED Talk from David Steindl-Rast, Want to Be Happy? Be Grateful:

His soothing and inspiring talk explains that grateful people are joyful people. He says that often we think that gratitude follows happiness - you get everything you want and then you are grateful - but in reality, it's the other way around: happiness follows gratitude. And he gives some concrete advice on how to be more grateful with his Stop, Look, Go reminder.

So, how about you? What small joys have you experienced this summer? Share your joys and gratitudes in the comments below - as David explains in his talk above, the more we share our gratitude and network, the better the world becomes!

New Diagnoses and New Treatments ME/CFS and Lyme

Our son's struggles with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and tick infections (Lyme disease, bartonella, and babesia) got even more difficult this year, but he is beginning to see some improvements now, thanks to a variety of new treatments.

It's been a long, hot summer here with seemingly never-ending crises in our family, but the biggest one has been the decline of our son's health. When he moved back home in May (he's 25), he was in terrible shape - worse than he's been in years - with a bunch of new symptoms and 40 pounds lighter. We knew he hadn't been doing well lately, but we didn't realize just how bad things had gotten. I took him to an Integrative Health practice that we'd heard good things about from local friends in our support group. The practice includes several different medical professionals, though we have been focused on two of them: a Nurse Practitioner (NP) who specializes in tick-borne infections (but looks at the whole body) and a Functional Medicine Practitioner, also a nurse, who specializes in GI issues and genetics. Both have been helpful so far, and with a bunch of new treatments and changes, our son is slowly improving. We hope to get him back to the point where he can live independently and even support himself; it is a slow journey, but we are seeing progress. Here's a summary of what we have learned and what he is trying, in the hopes that some of this will help others as well.

Brief History and Background
It's always hard to give a "brief" history of our son's illnesses because it is complicated, but here goes. He became ill with ME/CFS in 2004, two years after I did (his younger brother had milder ME/CFS that began at the same time but he is now fully recovered). By spring 2006, he was doing quite well, thanks to treatment for Orthostatic Intolerance and was back to school full-time, back in band, and even playing soccer again.

In April 2007, he had sudden onset of joint pain, plus all of his usual ME/CFS symptoms worsened. He tested positive for Lyme disease (a lucky thing, since the tests only catch about 60% of cases) and was treated for it. The joint pain improved, but he never really got back to that good state he was in the previous year. Over the next three years, his condition gradually worsened. Finally, some strange symptoms - and the help of other parents online - clued us into the culprit, and we took him to an LLMD, a Lyme specialist. He confirmed that our son had two other tick infections, bartonella and babesia, in addition to Lyme. Since the three infections had been present for so many years (and gone mostly untreated), they were dug into his system pretty solidly and were difficult to treat. His immune problems due to ME/CFS made treatment even trickier.

Fast-forward ten years. With treatment for the three tick infections, plus more treatments for ME/CFS, he improved to the point where he was able to start college on time, live on campus, and graduate with an engineering degree. The past ten years had its share of ups and downs, but each time he got worse, we got the bottom of the issues and treated him. This winter, though, he experienced the severe decline that I described. He was living away from home, there was a lot of stress in his personal life, and I had switched him from his usual tick infection treatment protocol (Byron White) to a different one (Zhang), a change I greatly regret now, so his tick infections had gotten worse, with worsening joint pain, fatigue, nausea, and headaches. In addition, he had developed completely new and alarming symptoms, including severe nausea, vomiting, a burning pain in his stomach, and severe anxiety.

The Tests
Our new medical practitioners ordered a slew of tests at his first visit, including:

• Genova Diagnostics GI Effects 3-day stool testing
• Bartonella testing through Galaxy Diagnostics (well-known as the best bartonella testing lab, though still not 100% accurate)
• Lyme and babesia testing through Igenex (again, known as the best lab for Lyme testing, though no tests can catch 100% of the infections), plus another babesia test through Medical Diagnostic Labs
• Special stained blood film test through Fry Labs
• Tests through regular labs for a wide range of viruses and other infectious agents (including other tick infections)
• Tests through regular labs for Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), thyroid function, celiac disease (gluten intolerance), vitamin D, homocysteine, hemoglobin
• A more sensitive follow-up test for celiac when the first one showed some gluten sensitivity.
• We had already done 23andme genetic testing and sent the results through MTHFRsupport analysis - the genetic specialist looked at that, plus sent our data through another analysis tool.
• Saliva testing for cortisol and adrenal function (in progress).
• DNA Connections urine test Lyme panel (recommended but not yet done).
• Ubiome monthly Explorer kit for stool testing as follow-up (in progress).

The Diagnoses
Based on all those tests, we went back for a follow-up visit with both practitioners and learned a lot (some we already knew but much of it was new, recent, and surprising):

• Severe overgrowth of bacteria in GI tract - the GI Effects test showed that he had very high levels of more than a dozen different nasty bacteria strains. The genetic specialist could point to specific bacteria strains and tell us what symptoms they caused, including the burning pain in his stomach, joint pain, and anxiety.
• Low hydrochloric acid in stomach, which contributes to some of his GI symptoms.
• Slightly low (low-normal) Total T3 (a measure of thyroid function); other thyroid measures normal.
• Celiac disease/gluten intolerance (something we never suspected).
• Low vitamin D3 - astounding since he takes 5000-10000 IU per day, though he wasn't taking all his meds the past few months since he often couldn't hold food or medicines down.
• Viruses: EBV, CMV, HHV-6 - all previously negative and now present.
• West Nile Virus - another big surprise.
• Babesia - negative (confirming our former LLMD's conclusion that he got rid of this one infection).
• Bartonella - 2 strains present.
• Lyme - equivocal results but likely, given his history and symptoms.
• Though babesia is gone, many other unidentified protozoa showed up in the blood smear.
• Lots of biofilms in his blood (sticky clusters of cells - Lyme bacteria is known to convert to biofilms, which is part of what makes it so hard to treat).
• Yeast overgrowth (which we already knew about and have been treating). 
• Genetic results showed he may be an over-methylator.

The Treatments

•  Nrf2 Activator (a Xymogen product) -  to activate the Nrf2 genetic pathway (per his genetic results - this is one of two genes present in those who don't respond fully to treatment for Lyme disease). This pathway regulates the production of important molecules that impart antioxidant activity, such as glutathione and superoxide dismutase (SOD). It also regulates the production of detoxification enzymes.
• Resumed A-Bart and started A-L Complex, herbal formulas for bartonella and Lyme, respectively, that are part of the Byron White protocol. He'd previously responded well to A-Bart. He is VERY sensitive to tiny doses of any tick infection treatments, so he is only taking 1-2 drops of each per week so far and having to build back up very slowly.
• Added CBD Oil, as needed for nausea, vomiting, stomach pain, joint pain, and anxiety - it's been very, very effective for him in controlling these symptoms in the short-term, while we work to eliminate their causes in the longer-term. We are using the Plus CBD Oil brand, which we buy at our local natural foods store and have found to be effective. Sometimes he buys edibles at a local dispensary, and the vape pen was also effective but effects didn't last long (if using vape, ask for solvent-free).
• Cytomel 5 mcg (Rx) - a tiny dose for his slightly low thyroid T3.
• OrthoDigestzyme - 1 pill upon waking, gradually working up to 3 per day, before meals - to treat bacteria in GI tract, stomach pain, nausea, vomiting, and lack of appetite. Saw immediate improvement from the first week. 

• Changed Probiotics - stopped all probiotics he was taking, except saccharomyces boulardii (for yeast) and added UltraFlora Integrity - to treat bacteria in GI tract, stomach pain, nausea, and yeast overgrowth.
• ATP 360 - 1-3 per day for improved mitochondria function and energy production.
• P-5-P 25 mg - an active form of vitamin B6 that I was already taking.
• Mega Mycobalance - 5 capsules 1-3 times a day - for yeast overgrowth 
• Stopped methylcobalamin (B12) injections - continuing hydroxycobalamin (B12) injections (Rx) every other day only (due to genetic results).
• Reduced 5-MTHF (20 mg - we buy both 15 mg (at link) and 5 mg) from every day to 3x/week (due to genetic results).
• Moved Magnesium-l-threonate from afternoon to bedtime (3 pills) to help sleep. 
• Switched from acetyl-l-carnitine to Carnitine Synergy, a product that includes both acetyl-l-carnitine and carnitine.
• Eliminate gluten from diet.
• Rinse with Biocidin after brushing teeth - to help with certain oral bacteria found in his GI testing. 
• Eat 2 Tablespoons of navy beans twice a week to help with Collinsella bacteria.

  
Results So Far

• Stomach pain, nausea, loss of appetite are all greatly reduced and vomiting is now rare. He can eat again, hold down his food, and is beginning to gain back some weight.
• He's working as a waiter 2-4 nights a week.
• Anxiety is reduced, though still an issue.
• His average daily rating of how he feels (on a scale of 1 to 5, where 1 is good and 5 is incapacitated) has improved from a low of 3.3 to 2.8.
• His % of time crashed (at a 4 or 5) each month has improved from 42% to 19%.
• He's had the energy to enjoy time with friends or his girlfriend several times a week.

So, he is doing better, improving slowly but surely. He is continuing to work on diet and increasing the dose of the new supplements listed above. He has more testing to do (the saliva test and the follow-up GI testing through Ubiome), and follow-up appointments at the end of August. All these new supplements on top of the many pills we already take are a lot to keep track of, but we're helping him to juggle it all.

Now you see why I haven't had as much time for blogging or social media this summer! This crisis was frightening for all of us, and he really hit bottom by May, but we are hopeful that he will continue to improve. His goal is to make use of that engineering degree and get a full-time job so he can support himself.

I recognize that his particular set of problems is both unique and complex, but I thought that elements of what he's been dealing with would be helpful to others. In particular, I highly recommend the GI Effects testing kit from Genova Diagnostics - we learned so much surprising information from that.

Have you dealt with any similar problems? Or found some effective solutions to some of these problems? Please share your experiences in the comments below.

Weekly Inspiration: Listen to Podcasts

This morning, I was half-listening to Good Morning, America (Sunday Today was pre-empted by the golf tournament) while I did my yoga stretches, and I heard a piece on stress. The interviewee mentioned a podcast called Ten Percent Happier, so I was intrigued and looked it up. It's a podcast all about meditating, which features different kinds of meditation, as well as interviews with various celebrities (including the Dalai Lama!). It looks pretty good, so I will probably give it a try. This led to my deciding to devote today's Weekly Inspiration to podcasts.

I love listening to podcasts and split my audio time between a wide variety of podcasts and audiobooks, while doing things around the house, driving, walking, even brushing my teeth! I am probably a bit too plugged in, but if you haven't yet discovered podcasts, they're a great way to find inspiration and improve your life (or just entertain yourself). Here are a few of my favorites:

Inspiration & Improvement

Happier with Gretchen Rubin - this light, fun podcast comes from the acclaimed self-help author of The Happiness Project, Better Than Before, The Four Tendencies, and other books. She and her sister, Elizabeth (see below) chat about how to make your life happier. Their show is upbeat and insightful and includes regular features like Happiness Hacks and Listener Questions, as well as interesting and engaging discussions between the two sisters and with guests. I've been listening to this one for years and really enjoy it.

Happier in Hollywood is a spin-off podcast that Gretchen's sister, Liz Craft, hosts with her writing partner and best friend, Sarah Fain. The two of them are successful TV writers living in the L.A. area, so while their episodes are also focused on happiness, it is with a Hollywood spin. You don't have to live or work in Hollywood to enjoy the show, though. It does have more of a work focus to it, but the pair also discuss happiness at home, personal fulfillment, and mental and physical health.

The Slow Home Podcast is a newer one for me, just discovered this winter, but I am enjoying it already. The hosts are a husband and wife who live in Australia, and their tagline is "Slow living for a fast world." They talk about ways to slow down your life (something we all know about!), focus in on your self and your family and whatever is most important to you, and tune out all the noise in the fast-paced world we live in. I like that they are very open and honest about what brought them to this point, including extreme stress, unhappiness, and serious depression. Their episodes are also quiet and soothing to listen to.


The Rich Roll Podcast is one that I don't listen to regularly, but I have enjoyed a few of his episodes. I guess he is someone famous - used to be a professional athlete? - but I was unfamiliar with him. His focus is on wellness, spirituality, and other inspirational and improvement topics, and his episodes are lengthy interviews (or conversations, as he says) with various people, some celebrities and some lesser-known, on a wide variety of topics. I've enjoyed the episodes I've listened to, and they are always thoughtful and thought-provoking.

By the Book is a cross between inspiration, self-improvement, and entertainment that I enjoy. The hosts are two friends, Jolenta Greenburg and Kristen Meinzer. In each episode, they choose a different self-help book, live by it for two weeks, and report back. Along the way, they break down the elements of the book for listeners and recap their own experiences, as well as provide an epilogue on what (if anything) from the book stuck. They have covered everything from The Five Love Languages to The Life-Changing Magic of Tidying Up to Meditation for Fidgety Skeptics. The two women are super-honest and open, leading to some fascinating insights and conversations. The podcast is also very entertaining and enjoyable to listen to.

Balanced Bites Podcast is all about healthy eating. Its two co-hosts, Diana and Liz, are both nutrition experts. They are not focused on diets or weight loss but on eating well for a healthy life, something that those of us with chronic illness certainly need. I've only listened to a few episodes, but they seem to focus somewhat on Paleo and Keto type diets, but they also talk about topics like emotional eating and a wide range of health problems, like thyroid conditions and how food affects cortisol levels - again, all stuff that's relevant to us. Hmmm...it looks like they may have stopped creating new episodes in May (since the most recent one is called "The Last Episode"!), but they have a huge archive of interesting and informative episodes.

Books Podcasts

 
If you read my blog regularly, you know that I love to read, so some of my top favorite podcasts are about books and reading. Here are my current top 3 for those that love books: 

• Book Cougars - "two middle-aged women on the hunt for a good read." Co-hosts Chris and Emily are friends of mine, and I love listening to their fun podcast. They recount what they've been reading, literary adventures (like local author signings), and more. Sometimes, it's just the two of them - good friends talking about books - and sometimes they have guests on the podcast or interview authors.
• What Should I Read Next? - hosted by Anne Bogel, who writes the book blog, The Modern Mrs. Darcy. On each episode, she has a guest - usually a regular reader like you or me, sometimes someone well-known - who tells her three books they love and one book they hate, then Anne chooses some books that they might enjoy reading next. Fun, interesting, and guaranteed to give you some great ideas for your next book to read!
• But That's Another Story is hosted by the fabulous Will Schwalbe, author of The End of Your Life Book Club and Books for Living. This is a quieter, more reflective book podcast that is great for those who are sensitive to noise or have shorter attention spans. Episodes are usually shorter, featuring a celebrity talking about a book that changed his or her life, and Will's voice is soothing. He's a great guy, and I love listening to this fascinating podcast.

 

Just for Fun

I listen to some podcasts just for fun and entertainment. Here are three of my favorites:

• Pop Culture Happy Hour - two episodes a week from a group of NPR pop culture experts on the latest and best in TV, movies, books, and music - a great source for new things to watch, read, or listen to! This is one of my favorite podcasts, and I listen to the episodes each week while I refill medicine boxes for my son and I.
• Ask Me Another - a hilarious and quirky quiz/puzzle/game show. It's pure entertainment, with celebrity guests, plus regular contestants all competing in strange, sometimes musical, and always funny contests. Lots of laughs and lots of fun - my family laughs at me for yelling out answers while I'm listening in my earbuds (though they enjoy listening with me in the car).
• Wait, Wait, Don't Tell Me is an old favorite in our house and my family's first choice for car rides! It's a quiz show based on the weekly news, with a focus on the hilarious, bizarre, and strange. Host Peter Sagal leads a panel of three comedians in exploring the week's weirdest news and interviews a celebrity guest each week. It's timely, fun to play along with, and very funny.

You may have noticed that I don't listen to any podcasts that are focused on chronic illness or specifically ME/CFS. I have a few episodes here and there downloaded that I haven't gotten to yet.

So, I would love to hear about YOUR favorite podcasts! Whether on illness and health, inspiration, or just for fun, please leave me a comment and tell me which podcasts you enjoy listening to!

Movie Monday: The Widows

Last weekend, my husband and I were too worn out to go out to the theater, so we grabbed a DVD from Redbox to watch at home. We finally had a chance to see Widows, a 2018 award-winning movie that is sort of like a darker, grittier, more realistic Ocean's 8, about a group of widows who take on their criminal husbands' last job to pay off debts.

Veronica, played by Viola Davis, is married to criminal Harry, played by Liam Neeson, but she chooses not to confront where their money and luxurious way of living come from. When Harry and his entire crew are killed by the police (and their vehicle blown up and destroyed) in a robbery gone wrong, Veronica is bereft and shocked. Those emotions turn to terror when she is visited by Jamal Manning, played by Brian Tyree Henry, the head of a Chicago crime ring who says that Harry owes him millions from this botched job, and that Veronica has just a few days to pay off that debt. Veronica finds notes left by Harry that describe his next job in detail, and she decides to pull together the other widows from the crew since they are all in danger and have no money. Linda, played by Michelle Rodriguez, has two kids and lost her dress shop when her husband was killed. Alice, played by Elizabeth Debicki, isn't too upset about the loss of her abusive boyfriend but has to turn to working for an escort service to support herself. Finally, they add Belle, played by Cynthia Erivo, to their group. The four of them prepare for this intricate and dangerous robbery that Harry had planned. Meanwhile, there is a corrupt political battle going on that is inextricably tangled up in the criminal world and their husbands' past lives.

As you can probably tell, it's a complex story but that just makes it all the more compelling, as you root for these formerly helpless women to come out on top. This action-packed and suspenseful crime thriller has lots of unexpected twists as the plot moves forward. I compared Widows in my opening with Ocean's 8, but it's only the plot - a group of women pulling off a complicated caper - that is similar. The tone is entirely different. These women are not having fun; they are fighting for their lives, their families, and their livelihoods. The setting in Chicago is gritty and dark. It's exciting to watch these women step up to the challenge and become strong, kick-ass heroines of their own stories. The ensemble cast is superb - both the women and the supporting men, who include Robert Duvall and Colin Farrell as father-son politicians - with strong performances all around. Of course, Viola Davis has a chance to employ her ugly crying - no one does it like her! All in all, we both enjoyed this dark, gripping drama about women taking their futures into their own hands.

Widows (2018) is available for streaming on Amazon. It is also available on DVD, and we rented it through Redbox.



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