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.