Quick Update - Personal & ME/CFS

Hello! Yes, I'm still here! Sorry that the blog hasn't gotten much love lately. Things have been super busy around here, and I've been more than a little overloaded. A few quick personal updates & some links to ME/CFS news, too:

Personal Updates:
I had a rough couple of weeks, with a BUNCH of medical appointments - nothing to do with my ME/CFS, but they took a lot out of me anyway. I had two broken dental fillings replaced (one each week) and two minor toe surgeries to try to fix ingrown toenails - those started last winter when my feet were swollen from erythromelalgia, which has been in remission this year (see how here), but the ingrown toenails keep coming back and are very painful. Hoping this took care of them for good - we'll see! There were also appointments for my 92-year old father-in-law, so the medical stuff has kept me busy.

Writing has also been keeping me busy...and that is good, but as always, time and energy are the limiting factors. I'm trying to do more travel writing because I really enjoy it and want to focus on it more in two years when my husband retires. I had two travel articles published in March:

• Nebraska's Stonehenge, published in the March 2018 issue of Trailer Life magazine.
• Unexpected Mid-Atlantic: In Delaware's Defense published in the March/April 2018 issue of AAA World magazine.

So, that's been fun, and I've been hard at work the past month pitching more travel stories to more publications.

I've also been writing a lot more for Shelf Awareness, continuing the monthly book reviews I started last year but now writing columns for their From My Shelf feature and author interviews, too. I am really enjoying both of these! There was a bit of a learning curve regarding how to effectively record the author interviews (and some operator error on my part), but I love doing the interviews - they are like my own private book clubs with the authors! Those new pieces of mine haven't been published yet, but if you enjoy books and want to see what I'm writing, you can check out my book blog (where I will post my reviews, interviews, and columns) and/or sign up for the Shelf Awareness newsletter (sign-up box in the upper right corner). That's all been a lot of fun, but a bunch of these assignments are all due close together, so that's keeping me very busy.

Here at home, we helped our sons head off on their spring break this week, and last week my husband and I managed a short - and very much needed! - weekend getaway to Annapolis, MD, a wonderful waterfront town with so much amazing food that we both gained weight in spite of a lot of walking. You can check out some of my photos here - this coming weekend, I will be posting the food-related photos and brief reviews of some of the best restaurants we found.

(By the way, if you are wondering how I got well enough to manage my writing career and some travel, here is a summary of the treatments that have worked best for my sons and I over the years - we now function fairly well and live active lives again.)

Quick ME/CFS Updates:
I have a backlog of research studies and other information I want to review, summarize, and share with you, but in the meantime, here are a couple of great summaries of recent studies & other events:

• Solve ME/CFS Research 1st update - including research study news, upcoming webinars, and advocacy events - check out the list of upcoming advocacy efforts for International ME/CFS Awareness Day in May.
• News in Brief - March 2018 from Science for ME - a long list of recently published research studies, updates, publications, and events - including a LOT on the debunking of the PACE trials (i.e. the studies that resulted in doctors recommending Graded Exercise Therapy - GET) - we should finally be seeing some long overdue changes in patient care, especially in places like the UK where GET was the only so-called "treatment" offered for ME/CFS. This is exciting news! 

Ok, that should catch you up - sorry for the lack of blog posts lately. I hope to get back into my normal routine now.

Top ME/CFS Experts Cooperate on Treatment Guidelines

The good news in ME/CFS just keeps coming! This time, it's not in the realm of research, but the all-important topic of treatment. Many patients know that the only way to get complete and comprehensive medical treatments for ME/CFS is to see one of the U.S.'s few top experts. Now, those experts are coming together to document their expertise into treatment guidelines for primary care physicians and family doctors. Hurray!

This excellent article published on Medscape by medical journalist Miriam E. Tucker summarizes the first meeting of this esteemed group, a summit organized by Lucinda Bateman (one of those few top experts). This meeting was just the first step, but information from the group is already useful for doctors unfamiliar with ME/CFS and how to treat it.

From Dr. Bateman's own website, this is a summary of the meeting itself and which doctors attended - it's a Who's Who of top ME/CFS clinicians.

You don't have to wait for the final guidelines to be produced to begin to take action to educate your own doctor(s) and find effective treatments. Print the Medscape article and share it with your doctor - that alone will verify the severity and scientific underpinnings of our disease and begin to give them some ideas of what tests to run and the kinds of treatments that might be helpful to patients.

Here are some other recent documents that I've shared here on the blog previously that would also be great for printing and sharing with your doctor:

• ME/CFS Pediatric Primer on Diagnosis and Treatment - written for the treatment of young people but applicable to adults, too.
• ME/CFS: What Every Family Physician Needs to Know - a recent article that explains what is known about the science behind ME/CFS, with a brief mention of potential treatments (starts on page 23 of the pdf).

And if your doctor isn't interested in learning more about ME/CFS and won't read an article about it? Then, you need a new doctor. You don't necessarily need an expert - just someone who is open-minded and willing to listen and learn.

Movie Monday: The Big Sick

I'm a bit behind in my movie reviews, but it's turned out to be timely, with the Oscars just last week. Back on New Year's Eve, my husband and I watched The Big Sick, an original, warm, and funny romcom that is based on a true story.

As the movie opens, Kumail, played by Kumail Nanjiani, is doing his stand-up comedy routine and hanging out with his other comic friends. After the show, a pretty blond grad student named Emily, played by Zoe Kazan, talks to Kumail at the bar and tells him how much she enjoyed his set. The two start dating, and for a while, it's a typical romcom story, with two attractive main characters who are gradually falling in love. But Kumail is originally from Pakistan, and his parents - though very nice - are very traditional and expect him to marry a Pakistani girl. In fact, he has to sit through yet another set-up every Sunday, as his mother invites one eligible Pakistani girl after another to meet him at their weekly family dinner.

Eventually, Emily gets angry that Kumail won't introduce her to his family, and the two break up. Soon after, though, with both still upset over the break-up, Emily gets very sick and is admitted to the hospital, while doctors try to figure out what is wrong with her as she rapidly deteriorates. Suddenly, Kumail finds himself at Emily's bedside, facing down her parents, played by Holly Hunter and Ray Ramano, for the first time, who know that he's the guy who broke their daughter's heart - awkward!

The Big Sick won 16 different awards - many for "Best Movie" or similar - but was passed over for an Oscar last week, much to fans' disappointment. It was nominated for Best Original Screenplay, a recognition of which it was worthy. The backstory adds to its attraction, as Kumail and the real Emily (V. Gordon) wrote the screenplay based on their own real-life love story. As you can imagine, with a stand-up comic writing the script, it's a very funny movie, but it is also very warm and moving, too. Kumail and Zoe are both very good in their roles, as are the supporting cast and especially Kumail's family. As always, Hunter and Romano are fabulous. We both enjoyed it very much.

An Amazon original movie, The Big Sick is available free streaming on Amazon Prime 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.

    

URGENT: Tell Congress To Increase Funding for ME/CFS!

There is a big decision being made in Congress in the US this week over additional discretionary medical funding, outside of the NIH budget. Now is our chance to be heard and let our representatives know that ME/CFS is worthy of more research funding!

Solve ME/CFS Initiative has made it easy - the simple form at this link only takes a few minutes to complete and sends these important messages to your representatives in Congress. It really is very quick and easy - a great opportunity for you to make a difference, even if you are bedridden!

But hurry! The deadline is this week (I think Tuesday 3/13), so follow the link to fill out the form right now.

Let your voices be heard!

TV Tuesday: 11/22/63

I couldn't wait to tell you about 11/22/63 - we LOVED this show!! Both my husband and I loved reading the novel by Stephen King, about a man who time travels back to 1960 in an effort to stop JFK's assassination (yes, King write more than just horror). We couldn't wait to watch the TV miniseries...but it was on Hulu, which we don't have. So, I gave my husband the DVDs for Christmas, and we took advantage of the hiatus of our favorite shows during the Olympics to watch it. Wow. This immersive, suspenseful historical drama was well worth waiting for. It's definitely one of my favorite TV shows.

James Franco plays Jake Epping, a high school English teacher going through a heart-rending divorce in a small town in Maine (naturally - it's a Stephen King story). He eats every day at his favorite local diner, marvels at the cheap burgers, and becomes friendly with the owner, Al, played by Chris Cooper. One day, visibly unwell, Al asks him to stay after he closes up for the night and shares a terrible secret with him: Al is dying of cancer and needs Jake to finish an uncompleted mission for him. He shows Jake a weird time fissure in the back of his closet, where Jake sees for himself that walking through it brings him to that same spot in 1960. Al has devoted the past years, since he discovered this time rift, to figuring out how to stop JFK's assassination. He's done a lot of research and figures out that things in the modern world started going downhill after that event. He wants Jake to complete his mission for him - go back to 1960, travel to Texas, find out if Lee Harvey Oswald was acting alone in killing JFK, and if so, stop him. After some convincing and Al's death, Jake takes on the mission, with a stop-off in 1960 Kentucky to fix another more personal horrific event from the past first.

We were completely engrossed in this mini-series and binged it over a week's time. It's a movie-quality show that perfectly recreates the 1960's, down to every last detail (in fact, a "making of" extra on the DVD explains how they did some of that). The plot - tracking down Oswald, watching him, and trying to figure out if he was acting alone - is riveting and suspenseful, but the scenes of ordinary life are just as engaging. Since he has to stay in the 1960's for three years, Jake has to establish an identity and a cover, so he finds a job teaching English in a small-town Texas high school, where he meets a lovely school librarian named Sadie, played by Sarah Gadon, who significantly complicates his mission. The entire show is so immersive and the writing and acting so good that you forget you are watching James Franco and come to see him as Jake. I also found myself constantly thinking about the show in between episodes and for days after we finished it. I always find time travel plots fascinating for that reason - the convoluted cause-and-effect - plus King's assertion (as with many time travel stories before it) that time resists being changed. It all makes for a gripping, engrossing TV mini series that is well worth your time.

King's novel was outstanding, and this TV series brings it to life perfectly. If you are a King fan, watch for small winks to his other stories interspersed throughout the show!
11/22/63 is a Hulu original, so it is available for streaming free on Hulu, but it is also available on DVD, for purchase or through your local library system. You can also stream it on Amazon for $1.99 an episode or $14.99 for the entire season.



    

Movie Monday: Red Sparrow

My husband and I had a nice treat this weekend - dinner out and a movie at our local recliner theater. Our son had given us a Fandango gift card for Christmas, so we saw bought 2 tickets for the recliner theater on a Saturday night...all for $1! We'd been waiting for Red Sparrow to come out (it was just released on Friday), and though we were disappointed to hear some critical reviews, we still wanted to see it. We're glad we did! We both enjoyed this exciting Russian spy thriller starring Jennifer Lawrence.

Lawrence plays Dominika, the star of the Russian ballet whose career is cut short by a horrible accident. As a prima ballerina, Dominika and her mother were supported by the state, which paid for their apartment and all of her mother's extensive medical bills. When Dominika's career ends, her (evil) uncle Ivan tells her that the state will continue to support her and her mother if she does something for them. She is supposed to just change out a man's cell phone for another one, but things go horribly wrong and soon Dominika finds herself facing a far worse choice: die for what she knows or join the ranks of Russian spies. With no other options, she joins the Sparrow program, a humiliating and intense program the Russians use to train young spies to use their bodies to manipulate people. After her training, she is assigned to get close to an American CIA agent named Nate Nash, played by Joel Edgerton, in order to find out who is the CIA's mole in the Russian government.

That's just the set-up of this complicated, twisty plot. Filled with fake-outs, double-crosses, and other staples of the spy genre, this gripping thriller kept us glued to the screen, wondering if there was any possible way for Dominika to come out of this alive and intact. On the downside, there is a LOT of violence in this movie, including sexual violence and two horrific scenes of torture. I had my eyes covered several times! The plot was gripping, though, and the acting was good. True, Jennifer Lawrence is clearly not Russian, but let's face it - in real life, Russians don't talk to each other in Russian-accented English, either - you just have to suspend disbelief a bit and go along for the ride. And what a ride it is! The plot twists keep you guessing until the last moments of the film, with plenty of action, intrigue, and suspense along the way.

Red Sparrow was just released March 2, 2018, and is out in theaters now. Check Fandango for showtimes and theaters near you (see if YOU have recliner theaters nearby!) or to buy tickets. It is planned for release on both DVD (pre-order now) and streaming through Amazon in June 2018.

Flashback Friday: 16 Years Ago Today...

Happy Illiversary to me!

16 years ago today, my life forever split into Before and After.

16 years ago today, my life changed dramatically, though I had no idea at the time.

16 years ago today, I woke up feeling awful, with a severe sore throat, exhausted, and achy all over. I thought I had a bad virus, but it never went away.

16 years ago today, I forced myself out of bed because we'd planned a day trip to Baltimore with our young sons, and I didn't want to ruin the special treat. I still vividly remember barely being able to hold myself up at the National Aquarium, clinging to the handrails, and thinking that it was the worst sore throat I'd ever had and so different from other sore throats.

(For more details on the start of my illness and those early years, read Our Story)

Another year has gone by of my post-ME/CFS life. Today makes 16 years, but the anniversaries don't really bother me much anymore. Someone asked me yesterday when I got sick, and I said, "About 16 years ago....oh! exactly 16 years ago tomorrow!" That date which once loomed so horribly over me each year now feels like any other day, but the anniversaries used to be tougher.

I was feeling bittersweet on my 5th Illiversary, doing a bit better overall with treatment, but recalling that researchers and doctors often cite 5 years as a turning point (that few people completely recover after being ill longer than 5 years).

By year 8, I was feeling less contemplative. By then, having ME/CFS was just a part of my new normal.

When I hit 10 years of illness, I barely noticed the anniversary date, even though it was a milestone year. I was focused on my sick kids by that point, and my own illness had become the norm for me by then.

Baltimore 2016 - in a museum!

My 14th Illiversary was a triumph of sorts, as I returned to Baltimore with my husband, this time able to enjoy the city, including plenty of walking (though I still needed my afternoon nap!). It was my first time ever visiting an art museum, and the first time since getting sick that I could manage any kind of museum.

I'm sure I would feel differently about my ME/CFS anniversary if I was still as sick as I was in those first few years, but over the past 16 years, I have found many effective treatments that have greatly improved my symptoms (and my life), allowing me to be much more active and making crashes rare. I still need my daily nap and have some limitations, but I am quite happy with my life these days. I met a friend for lunch today, picked up my car from the shop, and spent most of the day writing, so that's a good day for me. Ten years ago, I wasn't even been able to sit up to write - I had to lie down on the couch with my laptop propped up (beta blockers are to thank for that improvement).

So, Happy Illiversary to me!