Wednesday, March 22, 2017

Webinar by Dr. Rowe: ME/CFS in Adolescents & Young Adults





Dr. Peter Rowe of Johns Hopkins, renowned pediatric ME/CFS and OI specialist, recently gave a webinar: A Clinical Approach to ME/CFS in Adolescents and Young Adults: A Practical Primer. This was part of the Solve ME/CFS Initiative's wonderful webinar series. You can watch his full webinar at the link above, on the Solve ME/CFS website, watch it on YouTube, or watch it right here:




Although the talk is aimed at doctors like pediatricians and family doctors (and is much-needed for that audience!), it is also very interesting and informative for patients and parents, even someone like me who spends a lot of time reading and researching our illness. His talk is aimed at treating children and teens, but everything he says is also applicable to adult ME/CFS patients. He covers:
  • Diagnosis of ME/CFS and how to exclude other conditions
  • The critical role of Orthostatic Intolerance (OI) in ME/CFS
  • Ehlers-Danlos Syndrome and Joint Hypermobility and the significant overlap with ME/CFS
  • Step-by-step approaches for doctors to investigate their patient's condition and try treatments
  • Patient case studies - both successes and  tougher cases
He briefly touches in the role of infections, immune dysfunction, and mitochondrial dysfunction (in the Q&A at the end), though those topics are not covered in great detail.

If you want even more from Dr. Rowe, here is an earlier webinar he did for Solve ME/CFS, focused on Post-Exertional Malaise (which is also closely related to Orthostatic Intolerance).

I highly recommend you watch this 1-hour presentation - it's chock-full of useful information.

Even better: Send the link to your doctor or your child's doctor and ask him or her to watch it!

Tuesday, March 21, 2017

TV Tuesday: Lilyhammer

When my mother was visiting a couple of weeks ago, my husband and I exchanged TV recommendations with her. We told her about Sneaky Pete (which she and her husband are loving) and Good Girls Revolt, and she told us about a unique comedy called Lilyhammer. It was a good recommendation - we are now hooked on it, too!

Lilyhammer features a set-up pretty much guaranteed to bring plenty of laughs. An infamous New York City mobster named Frank "The Fixer" Tagliano, played by Steven Van Zandt of The Sopranos, agrees to testify against his former boss and colleagues, if the FBI will protect him and relocate him. He says he won't be safe anywhere in the U.S., but he remembers enjoying watching the Winter Olympics in Lillehammer, Norway, so that's where he goes, with a new name, Giovanni Henrikson.

Giovanni, or Johnny as he asks his new acquaintances to call him, is a little disappointed when he first sees his modest home and tiny car in snow-bound Lillehammer, but he immediately begins to make the town his own. He joins classes for new Norwegian citizens, where he meets an attractive and out-of-work teacher named Sigrid, played by the lovely Marian Saastad Otteson. Right from the start, Johnny does things his own way, which is quite different from the way Norwegians typically do things. He is very polite but doesn't take no for an answer and believes there is no problem that can't be solved with money or the proper "motivation." From setting up a business to making friends to getting his driver's license, Johnny makes his way through Lillehammer in a most un-Norwegian way. A local Barney Fife-type police officer, bored with the tiny town's lack of crime, suspects something is up with Johnny...but he is way off-base in what he suspects, adding another dimension of humor.

My husband was skeptical at first. He is from Oklahoma and is really not into most mob-related TV shows or movies - just not his thing. However, Johnny has quickly won us both over. The entire cast (mostly Norwegian with no big Hollywood names beyond the lead) is excellent and fun to watch, the laid-back atmosphere of Lillehammer is welcoming, and Johnny's fish-out-of-water escapades are a lot of fun. Besides having plenty of humor, the show is also surprisingly warm, and you soon find yourself rooting for Johnny, despite his unorthodox methods.

We've only watched three episodes so far, and there are three seasons of the show on Netflix, so we look forward to a lot more fun with Johnny. You can also watch Lilyhammer on DVD or streaming on Amazon for $1.99 an episode or $12.99 for the entire first season (links below).



    






Sunday, March 19, 2017

Weekly Inspiration: Author Led Life of Kindness & Creativity

I was stunned this morning to hear the horrible news that Amy Krouse Rosenthal died of cancer a few days ago. Born in the same year as me, a writer with kids who grew up in the suburbs of the 70's, I felt a connection to her. As she put it, "we shared a moment (in the form of an e-mail exchange)" back in 2010, after I reviewed her book, Encyclopedia of an Ordinary Life (which I loved). In fact, she just e-mailed me again in October to tell me about her new book, Textbook Amy Krouse Rosenthal. I had no idea she was battling cancer then and was crushed to hear today that she lost that battle. She was a smart, funny, clever, playful, and kind person - and all of that came across in her writing.

You can read my review of Encyclopedia of an Ordinary Life (and then go read the book!). Sadly, I never received the review copy of Textbook Amy Krouse so I haven't read it yet, but I would like to.

I also posted this trio of fun and amusing videos that Amy made, in part to promote Encyclopedia of an Ordinary Life - they are short and well worth watching - clever and funny, just like Amy.

Amy's website tells you a lot about her life and her books - and again showcases that wonderful sense of humor. The website includes dozens of short videos that Amy made. One of them, Thought Bubble: Kindness, was the Winner of Best Animation at the Peace On Earth Film Festival 2011. You can watch that one right here:



Amy has also given three TED talks (three! I had no idea). In this one, she explains how she launched her project Beckoning Lovely -  a warm and inspiring concept and project:



Hopefully, that last video will inspire YOU to live your life as Amy did - with warmth, kindness, and creativity. Reach out to other people. Look for the lovely in your own life and share it with others.

The best way to honor Amy's memory is to enjoy the wonderful books she's written (many books for children, in addition to these 2 for adults). She was a talented, kind, smart, funny woman who will be sorely missed.

   
    
Encyclopedia of an Ordinary Life
by Amy Krouse RosenthalTrade Paperback


Powells.com
  
Textbook Amy Krouse Rosenthal
by Amy Krouse RosenthalHardcover
Powells.com

Friday, March 17, 2017

Blog Improvements and Updated Posts

I thought I should tell you about some blog improvements and updates I am working on, since many of the updates are buried in older posts. I've been posting them on Twitter and Facebook, but for regular readers or new blog readers just visiting the home page, you may not have heard about these yet.

I wrote my very first post for this blog on February 16, 2006, so I have been blogging for more than 11 years now...and other than writing new posts each week, I have done almost nothing to improve or update my blog. The result is that it is looking quite dated, and some of the older posts need updating. Believe it or not, after 11 years of blogging, I am still a novice! I know a lot about writing (I work as a freelance writer), but blog design and all the rest of it is still mostly a mystery to me. I have been trying to rectify this by learning more about blog design and other blog-ish topics I don't understand, and I have started to make some changes here.

Most importantly, I am working my way - slowly - through updating my most popular and informative posts. I am revising where new information or research is available, writing more on our own experiences since whenever the post was first written, and adding in recommendations for specific supplements or other products, where applicable, since I get asked about that a lot.

So, far, I have revised and updated these blog posts:
Unfortunately, each update takes me a long time, so the process is slow, but I hope to get to many more important posts in this updating process. I spent hours yesterday on the methylation post, just trying to get the text to stop switching to "xx-small" every time I published it! I finally figured that out but couldn't stop the font from changing type several times. I'm learning, but it's a slow process!

On the design front, I plan to:
  • Change the design itself (I know some people have trouble reading with the polka-dot background).
  • Update the sidebar, including other blogs to visit and other resources linked to.
  • Add an About Me/Us page (only about 11 years late on that one!)
  • Add a Where Do I Start? page to help new patients and/or those who are new to the blog to find the most important posts that can help them the most.
Whew, so that's a LOT of work coming up for me, but I will also be sure to keep adding new posts & information to the blog.

Please let me know YOUR needs and ideas - is there anything that you would like to see here?  Anything that would help you as a patient or you as a blog reader to get the most of this blog? Please leave comments to let me know how I can better help you.

And thanks for your patience as I struggle with finally learning about blogging 11 years after the fact!

Thursday, March 16, 2017

Donate to Research While You Shop!

iGive is a great way to earn money for ME/CFS research - or whatever your favorite charity is! - without costing you a cent.

I start at the iGive site for any online shopping and earn money for ME/CFS research - like the sweater I bought on sale at Lands' End yesterday to replace the one my son has outgrown! Birthdays, holidays, stocking up - we also donate for all the supplements we buy online - and those really add up!

Even better: From now until March 31, if you sign up for iGive (it just takes a moment to enter your name & e-mail and choose your charity), they will donate an EXTRA $5 to the Solve ME/CFS Initiative for ME/CFS research (my chosen charity)! Just use this iGive link to sign up today and choose your favorite charity!


Monday, March 13, 2017

Movie Monday: Mockingjay Part 2

My husband and I (and our sons, too) loved The Hunger Games YA trilogy by Suzanne Collins, her now-famous chilling dystopian series. We watched each movie adaptation: The Hunger Games, Catching Fire, and Mockingjay Part 1, so we figured we needed to finish it off and watch the final movie, Mockingjay Part 2 (even though it annoys me to no end when Hollywood takes a short novel and turns it into 2 separate movies!). It was a good end to the series...though, of course, the book was better!

If you haven't yet seen or read the beginning of the series, you should go back to those first. Read the books, which are outstanding for teens and adults and very well-written, and then see the movies, which are good adaptations with excellent casting.

So, Mockingjay Part 2 picks up where Mockingjay Part 1 left off: Panem is now at war and Katniss has agreed - reluctantly - to be the face of the revolution, though she still has some misgivings. She and her family and some other familiar characters from earlier movies are safe in District 13 at the start of the movie, but they soon join the fighting in the Capitol. Katniss wants President Snow to pay for all that he has done.

This last part of the story focuses on the war, with a lot of action-packed scenes of battle. It's very well-done, and the special effects are excellent, especially of some of the high-tech forms of warfare that the Capitol unleashes on the rebels. It's been quite a while since I read the books, so there was still some suspense in it for me, as I didn't remember all the details of how it ended.

Of course, as is almost always true, the movie wasn't as good as the book. One thing that was lost in the movie adaptation was Suzanne Collins' very thoughtful and thought-provoking musings (through Katniss) on the nature of war, the price of war, and issues of power and wealth - all topics very relevant to our own world. I described this in detail (no spoilers, though) in my review of the book. The first Mockingjay movie - and to a lesser extent, this one - did show Katniss' moral and ethical struggles to some extent, but it is harder to delve deeply into those kinds of thoughtful issues on the screen than on the page. For me, that was the best part of the book - and the entire trilogy: Collins' thought-provoking commentary on our own world, through the lens of this dystopian world.

But, overall, we enjoyed the movie, and it was a good conclusion to the series. It is action-packed and full of suspense, and Collins is never afraid to kill off significant characters if it makes sense to the plot, so you really don't know what will happen. The cast, including Jennifer Lawrence as Katniss, is excellent. We were both glad to have seen the final movie to finish off the series.

All four movies are now available on DVD. You can stream The Hunger Games or Catching Fire for a fee on Amazon (though, oddly, the DVDs are cheaper) and the last two Mockingjay movies are both currently free on Amazon Prime (see links below). All four movies are also available through Netflix (DVDs only).



              

Sunday, March 12, 2017

Weekly Inspiration: Finding Your Way Out of the Storm

This week's Weekly Inspiration comes from a middle-grade novel I recently read called The Honest Truth by Dan Gemeinhart (my review at the link - don't worry - no spoilers!). The story is about a young boy named Mark with a serious illness (probably cancer though it's not stated); he's twelve years old in the book, and he's been sick since he was five. Fed up with so many years of illness and treatments and discouraged by some recent bad news, he runs away from home, with the goal of climbing Mount Ranier. He decides to tackle this big dream of his now because he's afraid this will be his last chance. Of course, he has all kinds of adventures (and challenges, including a big storm) along the way and meets some very interesting people.

Here's what Mark says toward the end of the novel:
"I thought of all my sickness, all my anger, all my fear. All that was just the darkness, just the storm. I got lost in it. But there's always the other side of the storm. And the people who get you there.

All the world's a storm, I guess, and we all get lost sometimes. We look for mountains in the clouds to make it all seem like it's worth it, like it means something. And sometimes we see them. And we keep going."

          - The Honest Truth by Dan Gemeinhart

I thought that was such an apt metaphor for living with chronic illness. We can so easily get wrapped up in those dark emotions, the storm, but we need to remind ourselves that the storm will end - there is always another side to it, after you've come through it. Like Mark, our illness may not go away, but we can still come out of that darkness of anger, fear, and bitterness to the other side, where the sun is shining, people care about us, and there is hope.

Besides sharing this thoughtful and relevant quote with you, I also chose a quote from this particular book because it is an excellent middle-grade novel. I know that many people with ME/CFS and related illnesses have trouble reading - concentrating, following complicated plots, etc. One possible solution is to read middle-grade books or books for teens and young adults. The Honest Truth is a great example of a book written for kids - shorter, with simpler language and a simpler plot than most adult novels - that is still thoughtful, moving, and full of suspense. It's an excellent novel for anyone, at any age. And, in case you are worried that it's depressing since it's about a sick kid, it's really not - it has plenty of emotional depth, but the focus - as you can see from the above quote - is on hope.

For more examples of middle-grade books, this link will take you to all of the middle-grade book reviews I've written (a lot!). Use this link to check out the teen/YA books I've reviewed (note that some, like second one listed, were actually written for adults but are appropriate for teens). For more, older reviews of middle-grade and teen/YA books, check out my blog Great Books for Kids and Teens - I combined that one with my Book By Book blog a few years ago, but it still includes hundreds of archived reviews. There are a lot of reviews between the two blogs, so if there is a specific kind of genre you like - realistic fiction, mystery, dystopian, etc. - just let me know in the comments, and I can recommend some of my favorites in that category for you.

You may find - as many with ME/CFS do - that you can manage reading or listening to on audio books written for kids and teens, even though most adult books are too difficult for you to follow.

How about you? Have you, like Mark in the book, ever felt like you made it through a storm of dark emotions and came out the other side? Have you ever tried reading or listening to books for kids or teens?

Monday, March 06, 2017

Movie Monday: Before I Fall

My husband and I took a last-minute mini vacation this weekend. We only drove an hour away and were just gone for 28 hours, but it was a nice getaway and just what we needed after a month filled with sick college kids at home!

One of the fun things we did this weekend was to finally try out the Dine-In Theater that is located near us. We stopped there for lunch and a movie on our way out of town. It was a fun experience, though the food was overpriced for the quality, as you'd expect. I was a bit disappointed that the recliner seats weren't in the same theaters as the dine-in options (and in those giant plush chairs, my feet dangled a foot off the ground!). But I made do and tucked my feet up into the large chair. Oh, and the movie! That's right - this is a movie review....

We saw Before I Fall, a new movie based on a very popular young adult novel by Lauren Oliver. I had wanted to read the book and never got around to it, so I was glad to see the movie adaptation. It's like Groundhog Day for teens.

Samantha, played with great depth by Zoey Deutch, is one of the most popular girls in her senior year at high school, dating one of the most popular guys and hanging out with a group of friends on top of the social strata. February 13th is set to be one of her best days ever. It's Cupid Day at her school, when students can buy roses for each other. As Samantha and her best friends carry their roses around school that day, a quiet boy named Kent, played by Logan Miller, asks Samantha if she'll come to a party he's having that night. After a typical day as Queens of their school, Samantha and her friends get ready for the party. This is also a big day for Samantha because she's told Rob that today is the night when they will finally go all the way, so her friends help her look extra-special.

Things begin to go awry at the party, though, and soon tumble out of control. One bad thing follows another, and the day ends in tragedy. But the next morning, Samantha wakes up safe and sound in her bed and is confused to see the same text about Cupid Day that her best friend, Lindsay, sent yesterday. It turns out it is yesterday, and Samantha seems to be reliving the same day again. This happens over and over, usually with the same - or similar - disastrous outcome. As she relives that same day over and over, Samantha begins to see behind the beautiful facade of her life and the lives of those around her and to look deeper. She becomes determined to somehow get things right, to change things for herself and others, so that she can stop this endless loop.

I knew the plot of the book and was excited to see the movie, but I wasn't sure how my husband would feel about a movie filled with teens. We both ended up enjoying it very much. Although it has all the familiar teen tropes at the beginning - the popular kids, the mean girls, the outcast, etc. - it turns out to have a lot of depth to it, as Samantha peels away the layers of her life, one at a time. The cast and acting are quite good, especially by Zoey as Samantha, and the plot is gripping. It is also quite thought-provoking to think: What would you do? How would you make things right? Though some of Samantha's actions as the movie progresses are a bit predictable, there are still plenty of secrets and surprises to discover.

Before I Fall was just released on March 3 and is currently in theaters. Its DVD and streaming release date has not yet been announced. So, you have plenty of time to read the book first, if you prefer!




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


 

Before I Fall is in theaters 3/3. Purchase your tickets in advance from Fandango and don't get sold out!

Thursday, March 02, 2017

My 15th Illiversary

Celebrate?
Huh, what do you know? It's March 2 again. Another year gone by of my post-ME/CFS life. Today makes 15 years, which seems like quite a milestone. The anniversaries don't really bother me that much anymore, though.

I was feeling bittersweet on my 5th Illiversary, feeling 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.

Last year, my 14th Illiversary, was a triumph of sorts, as I returned to Baltimore with my husband, where on the first day of my illness, we spent a horrible day back in 2002 that was supposed to be a fun day. Last year, I was able to enjoy Baltimore, including plenty of walking (though I still needed my afternoon nap!).

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 15 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 took a walk with a good friend this morning (wearing my heart rate monitor!) and then spent most of the day writing, so that's a good day for me. Ten years ago, I couldn't have even been able to sit up to write - I had to lie down with my laptop (beta blockers are to thank for that improvement).

So, Happy Illiversary to me! 15 years seems like a lot, but it's mostly just normal life for me now.