Monday, December 31, 2018

Movie Monday: Bohemian Rhapsody

I was finally feeling well enough to go out in the evening this weekend, and we enjoyed a nice dinner with friends Friday. I was lamenting that we missed seeing Bohemian Rhapsody on the big screen (because I was badly crashed all fall) when they told me that it was still playing for two more nights in a small theater that usually only shows independent films. I was so excited! So, the next night, my husband and I went out (second night in a row!), grabbed some dinner, and finally got to see this movie about the band Queen that I have been dying to see for months. It lived up to all the hype and my very high expectations - a moving, powerful, joyful (and sometimes sad) story of the band, its unique songs, and its one-of-a-kind lead singer, Freddie Mercury.

Rami Malek (of Mr. Robot fame) takes on the role of flamboyant and larger-than-life Freddie, beginning with his humble beginnings, living with his parents who were Persian and had migrated from India to Zanzibar, where Freddie was born. Brought up in a very traditional household, Freddie - whose real name was Farrokh - wanted to be a musician, though his father wanted him to take a more traditional job, and his mother wanted him to bring home a "nice girl." Watching a local band perform in a pub one night, Freddie sees Mary (played by Lucy Boynton), who quickly becomes his girlfriend and the love of his life. After the show, he approaches the band members with a song he wrote. They laugh at first, but they've just lost their lead singer, and a short sample of Freddie's amazing singing voice convinces them to bring him in. The band soon reforms as Queen, and Freddie's stage presence, singing, and song-writing genius propel them to bigger and bigger venues and finally, an album. The rest is music history, of course. Meanwhile, in Freddie's private life, he marries Mary, but as most fans already know, he eventually realizes he's gay. They break up, and he begins to explore a very different life, though they remain devoted to each other throughout their lives. Freddie lives a hard partying life, like many a rock star, that eventually implodes. The movie ends with the band doing their part of the Live Aid concert, a stunning performance, especially since Freddie had AIDS by then.

I loved every moment of this movie. For much of it - especially the first half - I sat in the theater with a huge smile on my face, trying hard not to belt out each song and disturb my fellow theater-goers! It is pure, joyful fun watching this team of talented musicians come together and become what they were famous for, as they grow closer and also become a family. Some of my favorite parts were those showing behind-the-scenes how they came up with certain very creative songs, like Bohemian Rhapsody and We Will Rock You. Of course, it wasn't all fun and joy; Freddie went through some rough times, too. During those parts of the movie, I cried - and during some of the good parts, too! Any movie that can make you feel lboth joy and sorrow like that is incredible, in my book. Of course, it helps that I am a huge fan of Queen's music, so I thoroughly enjoyed all the music and concert scenes, too. It was an emotional rollercoaster ride that I never wanted to end.

Although it's the tail-end of its theatrical release, check your local listings to see if you can still catch Bohemian Rhapsody  on the big screen through Fandango:  


If you missed it in the theater, never fear! It is coming to both streaming and on DVD in January 2019 and can be pre-ordered now.

Just watching the trailer again sends shivers down my spine - check it out:

Friday, December 21, 2018

Lyme Update & Lyme Book Review

Hi, all! Sorry (again) for not being around much. I had a few good-ish days this weekend but then crashed again Tuesday. This major crash started back in mid-October, and I thought I was coming out of it finally, but you know what the chronic illness rollercoaster is like!

Since I believe a recurrence of my Lyme Disease triggered this particular crash (it was a mystery at first because I almost never crash for any reason anymore!), I have been focused on tick infections and recently read an excellent book on Lyme that I wanted to share with you. And if you think tick infections don't apply to you, then start with this blog post on why everyone with ME/CFS or FM should at least look into tick infections (and why testing is not reliable). First a quick family update.

Lyme Update - Our Story (Briefly)
So, for those of you new to my blog, here's a quick recap. I got ME/CFS almost 17 years ago, on March 2, 2002. Both of my sons also got ME/CFS about two years after that. We began the long process of trying treatments and found some that helped (see my Effective Treatments for ME/CFS post), but then I had sudden-onset knee pain and nausea. Since we live where tick infections are rampant (though that is almost everywhere now), I knew immediately I had Lyme disease. Long story short: I started on a 3+ year marathon of treatment. The immune dysfunction of my ME/CFS made it more difficult to get rid of, but I was finally Lyme symptom-free. A few years later, the knee pain started up again, and I thought I had a new Lyme infection, so treated it again. A few years later, it popped up again, and I finally realized it was never gone, just in remission. It recurred about every 3-4 years, including about mid-October this year, when this severe crash began. It took me a while to realize it was Lyme that triggered the crash because this time, the knee pain didn't start right away, though my right eyelid was twitching - weird, I know, but neurological symptoms are common with Lyme.

My older son's story is far more complex. He became ill with ME/CFS, with symptoms almost identical to my own, in summer 2004. Again, treatments (especially treating OI) were helping him & he was doing well, back to school, back in band, and even playing a little soccer again, when he suddenly got worse. Again, knee pain was a clue, and - luckily for him - he tested positive to Lyme (only about 65% who have it test positive). So, we treated his Lyme, but he never quite returned to that good baseline he'd been at before it. Over the next three years, he got worse and worse until he was almost completely incapacitated. We were chalking it up to "just" ME/CFS. At that point, some unique symptoms finally made us realize he had bartonella, another tick infection, so we took him to our Lyme doctor, who confirmed he had bartonella, Lyme, and babesia (another common infection carried by ticks) - he'd probably had all three infections for 3+ years, but our pediatrician only knew to test for Lyme. To make a very long and complicated story short, that was about 8 years ago, and our son has been undergoing treatment for the 3 tick infections since then, first with antibiotics and other meds (babesia isn't a bacteria) and later with an herbal protocol, as well as treating his ME/CFS. He has made very slow progress but has improved, bit by bit. He just graduated from college this summer!

New Lyme Book
So, fast-forward to this fall. I bought a new book on Lyme Disease, The Lyme Solution: A 5-Part Plan to Fight the Inflammatory Auto-Immune Response and Beat Lyme Disease by Darin Ingels, ND, FAAEM, and my long crash gave me plenty of time to read it. You can read my full and detailed review of the book on my book blog. Despite over 10+ years of experience with Lyme, I still learned some new things from this book. Most importantly, the author compares various herbal protocols and says that the one we have used for years is often too potent for many people and has the tendency to cause severe Herx reactions (a characteristic worsening that occurs when you treat tick infections or other underlying infections like viruses). That has been my son's experience exactly! A normal dose of the formula he takes is 30 drops a day. After 4 years on it, he can still only tolerate 1 drop a day. So, I was very interested to read that another protocol tends to be gentler and less likely to cause such a severe response.

As a result, we talked to our Lyme doctor (LLMD) and got the OK to try this other protocol, the Zhang protocol, which is based on Chinese herbs. It's only been 3-4 weeks so far for both of us, and we are still Herxing, so we are taking it much more slowly than the author of the book recommends, but I am hopeful. Our son was kind of "stuck" and seemed to not be improving as much anymore and couldn't seem to increase his tiny dose. As for me, well, my Lyme does go into remission, but then it keeps popping up again to wreak havoc every 3-4 years. So, I am hoping this new protocol will help to get rid of my Lyme and help our son to get to the next level of functioning so that he can manage a job and adult life. I'll let you know how it goes!

Bottom line is that this book, while not perfect, was informative, and I do recommend it for anyone dealing with tick infections (or who even thinks there is a possibility of tick infections - it covers the challenges of getting diagnosed, too).

And if you are thinking that none of this applies to you, then I urge you to at least read my blog post, Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections. We knew all about Lyme disease, yet we still missed 3 tick infections in our son for more than 3 years. Testing is not reliable, and the urgency in at least ruling out tick infections is that they can cause permanent neurological damage when left untreated. This is serious stuff, and the consequences of missing it can be serious and permanent. And, if you, too - like us - are struggling with Herx reactions while treating tick infections or other underlying infections in ME/CFS, then check out my post on Managing Herx Reactions (more of our hard-won experience!).

So, that's us these days - trying something new for tick infections while keeping up all our usual treatments for ME/CFS. I am still nowhere close to my normal baseline for the past few years (which was pretty good!), but I am at least sitting up more now & getting out of the house a bit.

Here's to a healthier 2019 for all of us!

You can purchase The Lyme Solution from Amazon in print, e-book, or audio:

Sunday, December 16, 2018

Weekly Inspiration: Living in a World Apart

Just in time for the holiday season, my latest article on the ProHealth website, Living In a World Apart, is all about managing family gatherings (especially with loved ones you rarely see) when you have a chronic illness. You can read the full text of the article at the link.

Although I always try to incorporate my own experiences into the articles I write for ProHealth, this one in particular was deeply personal. In it, I share my own experiences - many of them painful - in gathering together with extended family. My own family tends to handle difficult circumstances like chronic illness with denial and avoidance, and at least one family member (perhaps others) firmly believes that I am either "making it up" or at the very least, exaggerating my illness. Of course, learning and living with this has been extremely painful for me and created rifts in some relationships that can never be healed.

Even without those toxic relationships, attending any kind of gathering can be challenging for those with chronic illness - the noise, the crowd, the exertion of socializing, the stress of trying to stick with a restricted diet. Add to all that the fact that the illness itself, with fatigue, brain fog, and pain, can make you feel as if you are in a separate world, even though you are surrounded by family or friends. It's a surreal feeling and impossible for anyone healthy to fully understand. That's what the title of the article means, and I love the photo the editors chose to accompany it:

BUT, it's the holiday season! There are plenty of family members that love me (even if they don't fully understand my situation), and I love them. I made a choice years ago - after much thought - to maintain relationships with my family because they are important to me (and also, the troublesome family members are inextricably mixed in with the kind and caring ones). In particular, I absolutely love spending time with the younger generation - my niece and nephew and my two cousins (my first cousins though they are close in age to my own sons). They are all delightful and fun (and far more understanding than their elders), and I look forward to the few times each year that I get to see them.

So, this article is all about how to navigate the pain and take care of your own needs at gatherings with family and friends - while actually enjoying the event!

I would love to hear about your experiences and especially, what has worked for you to manage - and enjoy! - these kinds of gatherings because as you'll see in the article, I certainly don't have all the answers and could still use some help!

Enjoy the holidays with friends and family!
1998: the last Christmas with the WHOLE family there! Happy memories.

Tuesday, December 11, 2018

TV Tuesday: Killing Eve

With all the fall shows on cable going on hiatus after their "mid-season finale" (when did that become a thing?), my husband and I were hunting for something new to watch last week. I told him I'd been hearing rave reviews of Killing Eve, which was just nominated for Golden Globes for Best TV Drama and Best Actress, so we tried the first two episodes...and then ended up quickly binging the rest of the first season!

Sandra Oh (of Grey's Anatomy fame) stars as Eve, an American married to a Brit, living in London, and working for MI5 (the UK's version of the FBI) as an analyst in an office. It's clear from the first episode that Eve is eager to do more and has some amazing instincts, but her job definition is limiting. She is assigned to babysit a woman who witnessed a horrible assassination, but she goes above and beyond the call of duty. By the second episode, she is working for a small, secret sub-organization within MI6 (like the UK version of CIA) that is tasked with finding the mysterious assassin who is leaving dead bodies all over the world. The team knows - thanks to Eve - that this deadly killer is a woman. From the beginning, the audience sees this story play out from both Eve's perspective and that of the female assassin, Villanelle, who soon knows that the team (and specifically, Eve) is tracking her. From then on, it becomes a cat-and-mouse game, with Eve and her team chasing Villanelle around the globe, and the two women becoming more and more obsessed with each other.

This show is so unique and completely compelling! We finished the first season in just a few days and were disappointed to find it was over so soon. Sandra Oh, an acclaimed actress already, is excellent in this role, as Eve is first fixated on finding Villanelle and later, more personally fascinated with her, all while her marriage suffers. Jodie Comer, as her nemesis, Villanelle, is less well-known as an actress but is incredible in this role, playing the strangely appealing cold-hearted killer in a way that is utterly captivating. The rest of the cast is good, too, but these two women take front stage as they become locked in psychological warfare - and something like admiration? - with each other. In addition, the mystery and thriller elements of the show provide plenty of suspense. The short first season was over far too soon, and we can't wait for season 2 (due out in 2019)!

Killing Eve is produced by BBC America, and the first season with 8 episodes aired this spring. You can still find it On Demand through your cable company or on the BBC America website, though only episodes 1 & 2 are free in both places, so you can try it out. Spoiler alert: you will love it and want to watch more! You can purchase episodes on Amazon starting at $1.99 each or $13.99 for the entire season. We thought it was well worth the investment.

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.

Monday, December 10, 2018

Movie Monday: Trainwreck

Having been homebound for most of the past two months, thanks to a severe crash, I haven't been able to go out with my friends or even make it to my book group meetings, so last week, my two closest friends brought Girls Night Out to me! They came over with take-out Thai food, and we watched a movie in our family room - complete with recliners for everyone. We were looking for a light, funny movie and ended up watching Trainwreck, which was definitely light and funny, though perhaps a bit raunchy for some tastes!

Amy Schumer stars as Amy, a writer working for a men's fluff magazine called S'nuff in New York City (with hilarious article titles). Besides being focused on her career, Amy was brought up to believe that monogamy is not possible, a view instilled in her by her carousing father, Gordon, played by Colin Quinn, to explain why he and her mother broke up. Now, her father is aging, but Amy has stuck with his dysfunctional life philosophy. As a result, she drinks a lot, smokes some weed, and sleeps with lots of guys. Officially, she has a boyfriend, Steve, a muscle-bound hunk played by John Cena, but Amy still has one-night stands with other guys. Her rule is to never spend the night. Then, her editor assigns Amy to write an article about the "sports doctor to the stars," Dr. Aaron Connors. Amy knows less than nothing about sports, but she wants a promotion, so she spends time with Aaron, interviewing him for the article and getting to know him. She's attracted to him - and vice-versa - but he doesn't fit her usual type. He's intelligent, sweet, and kind. Will Amy be able to break a lifetime of conditioning to commit to one man?

Oddly, I think this is the first time I've actually watched Amy Schumer in a movie, even though I know of her, have heard interviews with her, etc. Directed by Judd Apatow, Trainwreck features his signature fast-paced amusing banter throughout (think Knocked Up, 40-Year Old Virgin, Bridesmaids, etc.) and also that same kind of raunchy, silly humor. I think it might have been a bit too raunchy for my friends (especially the one-night stand montage!), though we all laughed. As for me, I tend to prefer a more clever, dry wit in my comedies than such obvious silliness, but I enjoyed it overall. The cast was good, the banter funny, and like all romcoms, it has a happy ending. The side plots about  Amy's relationship with her sister and how they are adjusting to their father's aging were even tender and moving (and still funny). It's a fun, mindless ride for when you are looking for escape (and aren't easily offended!). Sometimes, that's just what you need.

Trainwreck is available for streaming on Amazon, starting at $2.99, or on DVD.


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.

Sunday, December 09, 2018

Weekly Inspiration: Happiness Is a Choice

Last month, for Nonfiction November, one of the nonfiction books I listened to on audio was Happiness Is a Choice You Make: Lessons From a Year Among the Oldest Old by John Leland. You can read my full review of the book at the link to my book blog.

I really loved this unique, fascinating, and inspiring book. The author is a journalist who spent a full year interviewing and spending time with six elderly people in New York City (details at my review link), all over age 85. My father-in-law is 93 years old, so this book gave me some insights into his life...but I was surprised to find that many of the lessons from the elderly apply perfectly to a life of chronic illness. They are often living with all kinds of physical ailments, plus just age itself has forced them to slow down, and their lives are often defined now by limits. Sound familiar?

Even though I was listening on audio, I frequently hit pause to rewind and write passages in my Quote Journal. Here are a few of my favorites:
"Here was a lesson in acceptance and adaptation. In a culture that constantly tells us to overcome our limitations, sometimes it is more productive to find ways to live with them."

"Problems were only problems if you thought about them that way. Otherwise, they were life and yours for the living."

"Here was a lesson on the myth of control. If you believed you were in control of your life, steering it in the direction of your choosing, then old age was an affront because it was a destination you didn't choose. But if you think of life instead as an improvisation in response to the stream of events coming at you - that is, a response to the world as it is - then old age is another chapter in a long-running story."

          - from Happiness Is a Choice You Make: Lessons From a Year Among the Oldest Old by John Leland

See what I mean? Each of these applies to my father-in-law's experience but also to mine, just in my 50's, as someone with chronic illness (and really, everyone, whether ill or not, could benefit from giving up trying to control everything!). That last one is especially powerful - just substitute chronic illness for old age.

This book really spoke to me and made me think...but it was also entertaining and enjoyable. By the end of it, I felt as if I had spent time with these six elderly people myself. I definitely recommend it - either in print or on audio.

You can listen to a sample of the audio here.

Hope you are having a good weekend!

Saturday, December 01, 2018

Updated Information on Treating Herx Reactions

Hi! Yes, I'm still here and still in the midst of this bad crash. I do think I've made some progress and am improving, but slowly.

Quick recap: I went into a severe crash/relapse about 7 weeks ago. This has become extremely rare for me, to crash for any reason at all and especially this bad. In all of 2017, I was only crashed for 3% of the time (11 days)!! I reduced - almost eliminated - post-exertional crashes by treating my Orthostatic Intolerance (OI) with low-dose beta blockers and did the same for virally-triggered crashes by treating the immune dysfunction at the heart of ME/CFS with a variety of treatments. I've been in pretty good shape the past few years - not cured, by any means (I still need my afternoon nap & have limits), but much better and living a fairly active life.

So, this crash seemed to come out of nowhere, and it took me awhile to figure out what was going on. One weird recurring symptom - a twitching muscle in my eyelid - finally tipped me off that the crash might have been triggered by my Lyme disease recurring (Lyme often causes weird neurological symptoms, and I've had this one before). Sure enough, I started treating Lyme again - after about 4 years in remission - and experienced the tell-tale worsening (Herx reaction) that confirmed my theory, with other typical Lyme symptoms re-emerging, like knee pain. That was abut a month ago, and I am finding that I have to proceed very slowly with the Lyme treatment, as I am Herxing pretty badly this time around. That, along with my son's continued struggles with treating his 3 tick infections, made me read a book on Lyme disease and do some more research into the best ways to treat Herx reactions. It turns out that even after 8 years of dealing with this, we still had more to learn!

Herx reactions (worsening) occur not only when treating tick infections but also when ME/CFS patients treat viruses with antivirals or sometimes even when treating yeast overgrowth with antifungals (and treating mold toxins, too). Learning how to properly manage Herx reactions will not only help you to feel better and function better but will also help you to make more progress in knocking out these underlying infections that are often behind many of our symptoms.

So, my Managing a Herx Reaction post is newly updated, with parts of it completely rewritten. I have added new treatments to the list and included dosage information for all of them. This now accurately compiles all of our hard-earned knowledge in one place...but please let me know if I missed anything that has worked for you!

I feel a little better today, though still achy and with some knee pain and lower energy than normal, so I am hoping that I will continue to improve bit by bit and soon get back to my "normal" baseline.

Tuesday, November 27, 2018

Support ME/CFS Research on Giving Tuesday!

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday & Cyber Monday. Every little bit counts, even if it's only $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did several years ago with OMF (see below) so that $5 is automatically donated from me each month - I don't have to think about it or do anything else, and my donation adds up to $60 a year! It only takes a few minutes to either donate or set up recurring donations.

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy - all are doing wonderful work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop!  

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. And right now, iGive will donate an extra $3 for every new member that signs up or downloads their iGive button using that link above (sign-up is free and super-quick).

Amazon is not a part of either program listed above but has its own charitable donation program: AmazonSmile. Just sign up and choose your charity (most of those listed above are options).

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients!

Monday, November 19, 2018

Movie Monday: Fantastic Beasts and Where to Find Them

Our older son came home for Thanksgiving break this weekend, and I was still crashed, so my husband, son, and I settled in for a night of pizza and a movie! The pizza was delicious - a rare treat since I am usually dairy- and grain-free - and we decided to watch a movie we've all wanted to see since its release in 2016: Fantastic Beasts and Where to Find Them. Harry Potter aficionados will know the title is a reference to a textbook used at Hogwarts and written by Newt Scamander. This movie takes place in 1920's New York.

As the movie opens, Newt, played by Eddie Redmayne, is arriving on a ship into New York. He's been traveling all over the world doing research for his upcoming textbook on magical beasts, and you can tell from his challenges going through customs that his plain, brown suitcase seems to hold some of his research subject matter. Newt is used to life in England, where magical and non-magical (aka Muggles) people live side by side, but here in the United States, the magical world is kept secret from so-called Non-Mags. As Newt struggles to adjust to this and other cultural differences, several of his magical creatures escape, through a series of amusing events. Along the way, Newt meets a non-mag named Jacob Kowalski, played by Dan Fogler, and a fellow witch named Tina, played by Katherine Waterston, who works for the US version of the Ministry of Magic and tries to turn Newt in for letting his magical creatures escape. Another force at work is an organization hunting witches called the New Salem Philanthropic Society. As Newt's escaped creatures wreak havoc and he tries to collect them all, there is an evil force unleashed upon New York City that threatens them all, witches and non-mags alike.

We all enjoyed this exciting, delightful movie very much. It's fun to see the wizarding world during an entirely different era and new place than the familiar Harry Potter stories but told with the same creative energy and sense of humor. The story itself has plenty of suspense and action but also a sense of wonder, especially where Newt's various creatures are concerned. All of the actors are wonderful in this movie, fully inhabiting their roles and making you believe it is New York in the 1920's (but a New York we have never seen!). It's a complex and intriguing plot that pulls you right in. We all loved spending two hours in this unique, colorful, and compelling world.

Fantastic Beasts and Where to Find Them is currently available for streaming on Amazon, starting at $2.99, or on DVD.

If you've already seen this first movie, its sequel, Fantastic Beasts: The Crimes of Grindewald (a villain introduced in this first movie) is currently in theaters. I am hoping to get feeling better in time to see it on the big screen in a recliner theater! Find times and theaters near you:

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.

Saturday, November 17, 2018

Videos to Watch While Crashed

Still couchbound
I am still here, on the couch - 5 weeks and counting now. This past week was even worse (hence the lack of blog posts), but I am a tiny bit better today so far. Feeling cautiously optimistic that maybe the end of this crash is in sight. I'll discuss my theories and treatments in another post.

Just wanted to share one way that I have spent my time while unable to sit up, write, or do much of anything. I've been watching videos from a recent ME/CFS research symposium, something I kept meaning to do but normally never have time for.

If you are also limited in what you can do, here are some videos relevant to ME/CFS to keep you occupied (and maybe teach you something or even help you with treatments!):
  • Second Annual ME/CFS Community Symposium, jointly sponsored by Stanford and Open Medicine Foundation earlier this fall - this is what I've been watching. It's a playlist, so you can choose which talks to listen to, and this was the day where top doctors and scientists reported on their research projects to the general public, including patients. If you are in need of some hope, the depth and breadth of research, the enthusiasm of the researchers, and the spirit of cooperation will lift your spirits!
  • Bateman Horne Center's series of 6 online classes for ME/CFS patients, covering the diagnosis and management of the primary characteristics of our disease, like sleep dysfunction, orthostatic intolerance, and pain.
  • Solve ME/CFS Initiative's Webinars - there are two new webinars coming up in December that you can sign up for, but you can also watch older webinars here, on topics ranging from school accommodations to research updates to treatment strategies from top doctors.
Hope those help to educate you and keep you busy! I've been stuck on the couch, but I've learned a lot this week!

Monday, November 12, 2018

Movie Monday: Ricki and the Flash

I had a brief (very brief) respite in my 5-week long crash on Friday, so I made it to my local library - woohoo! Crazy times. I noticed a few people browsing the DVD section, and I realized we haven't borrowed DVDs from the library in years! Between Netflix and Amazon providing movies without leaving home, and a Redbox a couple of miles away, we'd gotten out of that old habit. So, I grabbed a couple of movies for the weekend. That turned out to be a good idea, since my improvement was short-lived, and I felt awful again by Saturday morning. Needing a pick-me-up, we watched a fun movie with a great soundtrack from a few years ago, Ricki and the Flash.

Meryl Streep stars as Ricki (whose real name is Linda), an aging rock 'n roller who left her young family many years ago to follow her dreams in California. She did put out one album but never really hit the big-time. Now, she and her group, the Flash, are the house band for a small but lively bar in California. Her lead guitarist, Greg, played by Rick Springfield (!), is her partner in music and would like to also be her partner in life, but Ricki keeps him at a distance. When Ricki gets a call from her ex-husband, Pete, played by Kevin Kline, that their daughter, Julie, is in bad shape after her husband left her, Ricki gets on a plane. Julie is played by Mamie Gummer, who is actually Meryl Streep's real-life daughter, so their pairing on screen as mother and daughter certainly feels real. Ricki aka Linda is not exactly welcomed home by either Julie or her two grown sons, but she sticks it out and little by little, begins to repair years of damaged relationships and get to know her daughter again...and maybe even help her.

I really enjoyed this movie! Although it might sound odd at first that Meryl Streep is playing a rocker, she's actually (big surprise) wonderful in the role, completely inhabiting it, as she does all of her roles. Kevin Kline is also great (and funny) as the super straight-laced Pete, and it's easy to see that Mamie Gummer gets her acting chops from her famous mom - she does a wonderful job playing the damaged Julie who slowly comes back to life. Ricki's band plays a mix of 70's rock and newer songs, so it's always fun when they take the stage. There is also plenty of emotional depth here, as the estranged family gets to know their missing mother once again, bit by bit. It's a fun, warm, musical, and funny film that is very entertaining. A perfect cheer-up movie for my sick week.

You can stream Ricki and the Flash on Amazon, starting at $2.99, or buy the DVD (or borrow it from your library!)


Sunday, November 11, 2018

Weekly Inspiration: The Kindness of Strangers

Blanche DuBois famously said in A Streetcar Named Desire, "I have always relied on the kindness of strangers."
That quote is in my head this morning, as I check social media and see an outpouring of support from other patients that is incredibly heartwarming. I am starting week 5 of a severe crash and had an especially rough time this week, having to cancel a long-planned trip to my mom's and wracked with aches and exhaustion so bad that I couldn't even sit up most days. These kinds of severe weeks- or months-long crashes used to be common in the early days of my illness, especially at this time of year, but they have become extremely rare, thanks to a number of treatments that have helped me. In fact, I was only crashed for a total of 3% of the days (just 11 days) last year! That's made this crash even harder for me to deal with, since I am so out of practice.

I wasn't online much this week, unable to sit up and recognizing that even using my laptop while lying down wears me out and is not truly resting. But a few times each day, I would pull the laptop onto my lap, check my e-mails for anything urgent, and check Twitter, my blogs, and the Facebook page for this blog just for fun. And every single time, I was blown away and cheered up by the support from other patients during this ongoing crash. When you feel so isolated and - let's face it - sorry for yourself, knowing that there are other people out there who not only get it but are rooting for you makes all the difference in the world.

If you haven't yet connected to other patients in this way, I highly recommend it. You can join Twitter or Facebook with a pseudonym just to interact with patients, if you prefer. There are pages on Facebook, like mine, focused solely on living with chronic illness, and there are hundreds of groups where you can interact with others like yourself. I run one for Parents whose kids (including teens, young adults, etc) have ME/CFS and related illnesses. Myalgic Encephalomyelitis Global is a nice general patient group. And you can find over a hundred other groups specific to ME/CFS at #MEAction Network. If you have other conditions, look those up, too - there are groups for everything!

I did manage one quick post earlier this week by compiling together some older blog posts: Surviving a Crash - A Look Back in Time. These helped me and I hope they will help you, too!

That's enough blogging for me today. I just wanted to say THANK YOU to everyone who has reached out to me the past few weeks and let you know that you have made a real difference in my life.

Thursday, November 08, 2018

Surviving a Crash - A Look Back in Time

Couch, sweats, blanket, book & herbal tea = REST day!
I am now in my 4th week straight of being badly crashed - something that has become extremely rare for me in recent years, thanks to OI treatments and treating immune system dysfunction to prevent virally-triggered crashes. In fact, I hit an all-time low last year of being crashed and unable to function only 3% of the time all year! That's WAY down from a high of being nonfunctional 25% of the time back in 2007. So, this current, unexplained crash has hit me very hard, and I am out of practice dealing with crashes, so it's also been frustrating!

I don't have the mental energy or physical stamina to actually write an original blog post, so here are a few of my favorites on the subject of crashes from the past - enjoy!
  • The Boring Sameness of Crash Days - ugh, I am really feeling this one today! I have a looong list of things that need to get done, and I am unable to do any of them. I have been reading a lot and trying to stay off the laptop (not very successfully, as you can see!), but that boring sameness is starting to get to me.
  • Feed a Crash - ha ha This is a classic but still true today! For some reason when I am crashed, I want to EAT. Ironic since I am burning no calories and unable to exercise at all.
  • Living the Horizontal Life - describes a situation very much like I found myself in this week where I finally stopped fighting the crash and trying to get stuff done and just gave into it and focused on really resting. Also, a nice reminder in this post not to wallow in self-pity because I still have plenty to be grateful for - even more so now, when crashes like this have become so rare.
  • Need a Laugh? - my son always says that laughter is the best medicine! This week I have been getting my laugh on listening to Trevor Noah's memoir, Born a Crime, on audio, which is warm, moving, insightful, and very, very funny about his childhood in South Africa as a mixed race child. This old post features 3 links to hilarious websites that never fail to get me belly laughing - all three are still favorites of mine today!
One other thing that occurred to me reading these old blog posts is that I am SO fortunate to be able to just lie on the couch and rest when I need to now. Back in those days when I wrote most of those posts, one or both of my sons was also crashed or at least battling ME/CFS, so no matter how bad I felt, I still had to take care of them, drive them back and forth to school to catch a class or two, etc. They are in their 20's now (and one is fully recovered), so the mostly empty-nest means I can take care of myself when I need to. Something else to be grateful for!

Sunday, November 04, 2018

Weekly Inspiration: New Article on Extrovert/Introvert

So, once again this week, my apologies for still not posting the promised follow-up part 2 to my part 1 post, Challenges in Diagnosing Orthostatic Intolerance, on challenges in treating OI. It's coming, but I have still been badly crashed - about 3 weeks now. This is all very puzzling to me because although weeks-long (or months-long) crashes used to be common for me, especially in fall and winter when infections are all around, triggering my immune system to go even more out of control than usual, with treatments, these kinds of crashes (all kinds, actually) have become quite rare. I really can't remember the last time I was down for this long. I am heading to my mom's this week (fingers crossed that I feel well enough to manage it), so I hope to finally get that part 2 post on OI written after I get back.

I have been trying hard to listen to my body (a challenge because I'm out of practice!) and resting. I spent much of my week horizontal and just couldn't handle complicated writing projects (luckily, I was caught up on my paid freelance work).

So, here is a link to an article I wrote for ProHealth that was recently published: Has Chronic Illness Turned Me Into an Introvert? (read the full article at the link). This one is very relevant to me with the way I've been feeling - I have been needing my quiet alone time even more than usual!

I'd love to hear your experiences. Do you now crave quiet solitude and maybe feel a bit anti-social? Do you feel like chronic illness has changed you in any way?

Tuesday, October 30, 2018

TV Tuesday: You

You is a new drama on the Lifetime network (which I rarely watch) that surprised me and is perfect for this creepy season! It's a romcom that soon turns dark.

You begins as a sweet romcom when pretty MFA grad student Guinevere Beck, who goes by Beck, played by Elizabeth Lail, walks into a bookstore and hits it off with the cute bookstore manager, Joe, played by Penn Badgley. It's clear the two have chemistry and share a love of books - so sweet! Very quickly, though, we find out that Joe has a dark side, as he begins to stalk Beck to learn more about her so he can woo her. This is not just checking out her Facebook page (though he does that, too), but following her, looking through her windows, and cloning her phone so he can track her every move. Creepy? Oh, yeah...and it just gets worse. I won't ruin all the dark surprises in this show, but Joe is seriously twisted and has his heart set on Beck. And his strategy works! The two begin to date and get closer, as Joe secretly does more and more seriously dark stuff behind the scenes to remove obstacles to their relationship.

I expected a romcom, so this show surprised me, but I am enjoying it. It has a dark sense of humor, suspense, and increasing tension with each episode. Lail is adorable as Beck, and Badgley is deceptively charming on the outside as Joe, with a dark underbelly, though Beck has some secrets of her own. It's just a fun show that is completely original. I've watched six episodes so far and am looking forward to the rest of the season. And it looks like a second season is planned for 2019!

You is currently airing on Lifetime, with all episodes available free On Demand or on Lifetime's website. It is also available for $1.99 an episode or $18.99 for the season on Amazon.

Monday, October 29, 2018

Movie Monday: A Star Is Born

My friends and I had been trying to find a day when the three of us could all go to see the new remake of A Star Is Born, but it took us three weeks to get our schedules (and the stars) aligned. It was worth the wait. Though I expected to like it, this powerful movie - and its music - just blew me away.

As I'm sure you've heard by now, Bradley Cooper and Lady Gaga are the stars in this version, in the roles most recently played in 1976 by Kris Kristofferson and Barbra Streisand. Cooper plays Jack, a rock country music star slightly past his prime who still brings in massive crowds. Gaga stars as Ally, a down-to-earth waitress who dreams of being a star, though she's been told by many people in the music business that she doesn't have the looks for it. In the opening scenes, she sings at open mic night among drag queens in a dive bar. Cooper, an alcoholic always looking for another drink, happens to spot the tiny bar on his way home from a concert and asks his driver to pull over. Wowed by Ally's singing, he chats with her afterward in the dressing room and then takes her out. There is awesome chemistry between the two of them immediately, as they talk about music and life, and it's clear that Jack is smitten. He pulls Ally into his world and literally pulls her onstage with him at a huge concert, where they sing a duet of one of her original songs that she's always been too shy to sing in public. That appearance becomes a viral hit, and Ally is off and running, soon with her own manager and producer, while her limo driver father and his friends cheer her on. At first, its bliss for the two singers, making music together and falling in love, but Cooper's alcoholism begins to get in the way, and his condition steadily worsens as her star rises.

I never saw any of the earlier versions of A Star Is Born (crazy, right?), so I went into this knowing almost nothing about it, though I've heard that this version does not follow the exact same plot as earlier films. I expected to be entertained by the music, but there is so much emotional depth to the story. Cooper and Gaga are both extraordinary in their roles (definite Oscar contenders), inhabiting their characters so completely that I felt as if they were those people, which is quite a feat for two such well-known stars. The supporting cast is equally good, with Sam Elliot as Jack's manager, a surprising Andrew Dice Clay as Ally's dad, and Dave Chappelle as Jack's oldest friend, among others. And the music? Wow, just wow. Of course, Lady Gaga is an extraordinary singer but here she is stripped of her usual outrageous costumes and gimmicks and her raw talent is amazing. And who knew Bradley Cooper could sing? The original songs created for the movie (mostly written by Gaga) are not the kind of throw-aways you'd expect for "fake hits" in a movie; they are moving, powerful songs. The day after I saw the movie, I listened to some of the songs on Youtube and got chills down my spine all over again. The plot of the movie was darker than I expected, but it is so full of honest feeling that I was swept along. This is a must-see and definitely worth seeing on the big screen for the musical performances.

A Star Is Born is currently in theaters (but probably not for much longer) - find a recliner theater near you, like we did!     

Fandango- A Star is Born in Theaters 10/5!

Sunday, October 28, 2018

Weekly Inspiration: A Plan B Day

I haven't posted much here on the blog in the past week or so (and didn't write my Challenges of Treating OI post, as promised) because I have been badly crashed. This has become a very rare occurrence for me, so I am out of practice! After pushing myself to "get things done" for a few days, I realized I needed to listen to my own advice and rest. Also, since I rarely crash from over-exertion anymore (see Effective Treatments for ME/CFS for details), my best guess is that I must have been exposed to a virus, and my immune system is going a little bonkers. Again, those virally-triggered crashes have been rare the past few years, thanks to treatments, but that's the only explanation that makes sense. So, I am pounding the herbal antivirals and trying to listen to my body. I was feeling a little better this weekend so was becoming active again, but I woke up today with worsened aches & sore throat again. I figured I would have to ditch my plans to write a Weekly Inspiration post.

Then, I said to my husband, "I think I need to make a Plan B for today," and the lightbulb went on! This is our shorthand for "forget the plans - how can we make things easier?" Since I have written about this before, I will just repost it here today, thus illustrating the concept of Plan B! This article, A Plan B Day, was originally published on the ProHealth website on October 22, 2016. You can read it at the link or I will reprint it in its entirety below.

Now, back to resting and listening to my body!

A Plan B Day

Although some people with chronic illness are severely ill – even bedridden – every day, for many of us, chronic illness is an unpredictable rollercoaster of good days, bad days, and everything in between. In the first years of my ME/CFS, waking up feeling horrible on a day when I had plans or things to do caused me a great deal of stress. I often pushed myself to do those things that “had to be done” and ended up in even worse shape afterward. After many years of trial and error, I finally learned (I’m a slow learner) how to deal with those kinds of days. I call it a Plan B Day.

In my previous life, I was super-busy and always on the move. I liked to stick with my plans (some might even say I was a bit controlling!), and I would get upset if I couldn’t do what I wanted to do. I may have been tired or battling a cold or extra-busy, but I convinced myself these things had to get done today – no other options.

Then, in 2002, ME/CFS hit. In one day, I went from can-do to can’t-do (though it took much longer to recognize it). In those early years of illness, I had trouble letting go of my too-high expectations of myself. If I was planning to go to the grocery store one day and woke up feeling awful, I was still in the mindset that I had to go. You know what happens when you push past your limits with chronic illness – you end up flat on your back the next day (and possibly for many days afterward).

Now, not being able to do what I planned is a daily occurrence. My way of coping is to call it a Plan B Day and change my attitude entirely. Let’s say that grocery store trip is planned, and I wake up achy and worn out, with a sore throat. I still often start thinking, “But I have to…” but now I stop myself. Can I cobble together a meal with what’s in the house already? Can my husband stop after work to pick up what we need? I make myself relax, calm down, and think through the alternates.

Here’s how you can adopt a Plan B attitude on those days when you just can’t (or shouldn’t) do what you planned:

Take a Mental Inventory – Put the brakes on that “must-do” mentality and really assess how are you feeling. How bad are your symptoms? Sometimes I don’t notice how severe they are until I slow down and make myself take notice. Consider what your true capabilities are today and what you’ve learned in the past from pushing yourself when you feel this way. Don’t panic – just tell yourself it’s a Plan B Day.

Revisit Your To-Do List – Look at what you had planned to do today. What is really essential and what can wait?  Can you pull together a meal without going to the store? Do you have to go to the post office or bank today? Pare your list down to what absolutely cannot be put off (like picking up your kids from school, for instance!) – only the truly urgent things. Be honest & drop that “must get it done today” mentality.

Delegate & Revise – What is your Plan B? For those things that must be done today, who can you delegate to? Can you ask a friend or family member for help? Can it be postponed? Is there another way to do it without the exertion (maybe an e-mail or phone call instead of going out, for instance)? Look in the freezer to see what your meal options are without going to the store. Text your partner or a friend to see if they can help. It’s hard for many of us to ask for help, but the truth is that most of our friends and family members would love to help and just don’t know what we need.

Drop the Guilt and Rest – Now that you have your Plan B, do those few things you must (from the couch or bed!) to postpone and enlist help and then forget about it all. Let your Plan B do its job. Rest, take care of yourself, and give your body a chance to recover. Stress and worry will only make you sicker, so let it all go and focus on recuperating. Indulge in a good book, a funny movie, or binge-watching your favorite TV show to take your mind off the to-do’s and signal to your body that it is time to rest.

Once I adopted the Plan B attitude, I was surprised to find how few things are really, truly critical to get done today. It required a complete mindset change from my previous approach, but I find that using the phrase Plan B Day reminds me to slow down and look for alternatives instead of panicking or pushing myself. It’s a constant struggle to drop those expectations and take care of myself, but I easily see the results – feeling better the next day instead of worse or having the energy to spend time with my family at the end of the day instead of being totally depleted. And, if you wake up tomorrow still feeling awful, there’s always Plan C.

Thursday, October 25, 2018

TRIPLE Your Donation for ME/CFS Research Through 11/27

Exciting news! You have a chance to TRIPLE your donation to Open Medicine Foundation, now through Giving Tuesday on November 27, 2018. Two anonymous donors have stepped up to make this offer so that every donation that is made between now and then will be matched and tripled. That means if you donate $10, that automatically becomes $30, and $100 becomes $300. Every little bit always counts, but now you can make it count even more!

I just donated through Paypal, which took less than 2 minutes, to take advantage of the tripling, even though I am also signed up for $5 monthly donations all year round.

Open Medicine Foundation is doing some amazing work and has already moved research forward in ME/CFS, which was sorely needed. They are part of two large collaborative research centers, at Harvard and Stanford, run the End ME/CFS Project, and are funding many other exciting research projects.

Donate now before you forget!

And please help to spread the word!

Friday, October 19, 2018

Challenges in Diagnosing Orthostatic Intolerance

I have written often here about the significant role that Orthostatic Intolerance (OI) plays in ME/CFS and how treating OI has led to life-changing improvements for my sons and I, allowing us to live active lives again. OI is an integral part of ME/CFS - one study showed that 97% of the patients studied had it - and it is also very common in those with fibromyalgia, Lyme and other tick infections, and MCAS. Basically, any disease that affects your autonomic nervous system can cause OI. OI is an umbrella term encompassing several conditions where the body can not maintain a steady blood pressure (BP) or heart rate (HR) while upright (standing or even sitting). If you feel worse after standing and better when you are lying down, that is OI at work. Some people faint from OI but many with ME/CFS just feel sicker when upright.

The two most common types of OI in ME/CFS are Neurally Mediated Hypotension (NMH), where the BP drops when you are upright, and Postural Orthostatic Tachycardia Syndrome (POTS), where the HR goes up when upright. Rarer forms of OI - like where the BP goes up or the HR goes down or HR and/or BP jump all over the place - also exist. The good news is that there are many inexpensive treatments available for OI, and treating it usually brings dramatic improvement in all symptoms - it's what got both of my sons back to school full-time and allows me to now exercise again, walking for up to 90 minutes at a time, with no crash afterward!

This blog post describes OI - particularly NMH and POTS - in more detail, including how to diagnosis and treat it and our own experiences. I also wrote two articles for the ProHealth website, Part 1: Diagnosing OI and Part 2: Treating OI. These two articles will be particularly helpful in sharing with your doctor(s) because they are heavily footnoted with references listed at the bottom from scientific studies and papers, in case your doctor wants proof and/or to read more. Finally, Dr. Peter Rowe is the top expert worldwide in OI as a part of ME/CFS, and his summary brochure on OI is also helpful for reading yourself and sharing with your doctor(s). He includes a review of available treatments.

Even with all this information available, though, I have found in helping hundreds of other patients get treatment for OI that most people still run into some challenges in diagnosis and/or treatment. I'll cover diagnosis today and treatment next week.

Here is an overview of the most common challenges you might encounter in diagnosing OI and how to overcome them:

Challenges in Diagnosing OI:
  • Finding a doctor. Some patients have trouble finding a doctor who is knowledgeable about OI. You have two basic options: a cardiologist, who will most likely run a tilt table test, or your primary care doctor, who can do a simple standing test in the office (see below). The cardiologist is helpful for ruling out other cardiac conditions, but even this specialist may not be familiar with NMH and POTS and is almost certainly unfamiliar with these conditions as a part of ME/CFS (which is different than when they occur alone). Once we had a cardiologist rule out other problems for our son, we just went with standing tests in our family doctor's office.
  • Which test? You need a test that will show precisely what is happening to your HR and BP while you are standing. Cardiologists will tend to run all sorts of ruling-out tests, like EKGs and 24-hour monitors, but there are only two ways to diagnose OI: a tilt table test or a 10-minute standing test (instructions and forms at the link). The tilt table test is much, much more expensive, requires special equipment at a separate location, and can end up making the patient very ill and badly crashed, since it is intentionally trying to cause OI and lasts up to an hour or more. The standing test can be done in about 30 minutes in any doctor's office, with a nurse or doctor with a blood pressure cuff and watch (I wore my own heart rate monitor which made it even easier), so it only costs as much as a doctor's visit. It is still triggering OI so will still make the patient crash, but not as much usually since it doesn't last as long. Here's the surprising part: one study actually found the simpler standing test is MORE effective at diagnosing OI than the expensive tilt table test.
  • Stand VERY still. During the standing test, the patient leans against a wall for stability but then must stand absolutely still - not even wriggling fingers or toes. This is hard to do! Our bodies naturally want to compensate for the plunging BP and/or the rising HR, and they normally do this by moving around to keep blood circulating and not pooling in the feet and lower legs. Don't move, and let the nurse or doctor take the BP and HR measurements.
  • 10-minute standing test, not 1-minute. Those instructions linked above describe a test where the patient stands, leaning against a wall, for a full 10 minutes (or until the criteria is met, at which point the test can immediately end) after 10 minutes of lying down. I have lost count of the number of times I have heard that a doctor took a patient's BP while sitting, then immediately upon standing and announced they do not have OI. This is most likely due to confusion between Orthostatic Hypotension (OH), in which the BP falls immediately upon standing, and NMH, where the BP drop can take a while to fully develop. In fact, one doctor found that NMH can take up to 50 minutes to fully develop in ME/CFS patients, though most of us can't tolerate standing that long. It's the same with POTS. If your POTS is severe, it could show up immediately, but for most of us, up to10 minutes of standing is required for it to fully develop.
  • Watch for trends. Continuing along those same lines, be aware that your NMH or POTS or other form of OI might not fully develop, even during a full tilt table test. For that reason, the forms for the standing test have room to record symptoms. You and your doctor should look at the full picture after the test to determine if you have OI. So, if your HR went up 25 bpm in the 10-minute standing test, but the criteria says you need a 30 bpm increase to have POTS, you probably do have it, and it just didn't fully develop in that time. It's not normal for your HR to jump so high just from standing; a normal healthy person's body can hold their BP and HR pretty steady while standing still. Similarly, if you didn't meet the criteria for NMH or POTS but felt very sick during and after the test. So, you would still benefit from OI treatment.
  • Check BP as well as HR.  I honestly don't understand why, but I hear over and over again from patients whose doctors (often well-trained cardiologists) diagnose them with POTS but don't look at what their BP did while standing or on the tilt table - or measured their BP but then ignored it. I guess POTS is a more common condition, so they are more aware of it. But the other side of the OI equation is just as important, so ask your doctor what your BP did while upright, either during a 10-min standing test or a tilt table test.
  • One test might not be enough. I knew OI testing wasn't foolproof, but I was still stunned to read this study that showed that only 65% of POTS patients (already diagnosed with POTS) had their POTS show up with a single test. 65%! So, be aware that it might take multiple tests, and show your doctor this study if you think you need a second test. The study found the tests were more accurate in the morning, so that could help. If you have symptoms of OI (feel worse when standing, better when lying down) but your standing test doesn't show OI, come back another day (preferably in the morning) and try it again. This is another case where it's important to look for trends - if your BP or HR is trending up or down but doesn't quite meet the criteria - and to record symptoms during the test. When my son was tested, his feet turned purple and after about 7 minutes of standing, he felt horribly sick, was sweating (in a very cold office in January), and had pale, blotchy skin. Clearly his body could not tolerate standing!
All of this might seem like a lot of trouble to go through to get more diagnoses, but these are conditions that are measurable (a nice change of pace for us) and very, very treatable. Treating OI can lead to dramatic improvements in all symptoms and in quality of life. It's a big part of what got my sons and I back to living semi-normal, active lives again.

Up next week: Challenges in Treating OI, to help you get the same kinds of improvement we've gotten from OI treatment, which - like all aspects of ME/CFS - can require some trial and error to get right.

Have you encountered other challenges or problems in diagnosing OI that I haven't covered here? If so, please leave a comment below, and I will respond.