Tuesday, May 29, 2018

TV Tuesday: The Crossing

Way back in September, in my Fall TV Preview post, I mentioned that The Crossing was one of the new shows I was most excited to see. It was supposed to start in October, and I kept checking, but its start date kept getting pushed back. It finally started in March 2018, and my husband and I have been enjoying this intriguing sci fi thriller ever since!

Steve Zahn (one of our favorites from Treme) stars as Jude Ellis, the sheriff of a small seaside Oregon town, who moved to the area to escape his past and live a quiet life. That life is shattered one night when dozens of people wash ashore in his town, many of them dead but some still alive. There was no record of a shipwreck, and these unusual refugees claim to have come from 180 years in the future, where the world is war-torn and violent. Jude is intrigued, especially by a little girl named Leah, played by Bailey Skodje, who washed ashore without her mother, who is not among the dead, either. The refugees are cared for, while the dead bodies are catalogued, until Homeland Security suddenly arrives on the scene and takes over, shrouded in secrecy, and ferries the refugees off to a hidden spot. But Jude can't forget them - especially Leah - and can't shake the feeling that something is off in Homeland's response.

That's pretty much just a vague sketch of the plot of the first episode - to tell you any more would be giving away some of this show's many, layered secrets. It's a twisty, action-packed show with lots of suspense, but it has plenty of heart, too. Jude is estranged from his wife and eager to welcome his beloved son to his new home in Oregon, but it's a difficult time for some quiet father-son time with all that's going on. Jude is not the kind of guy to just forget about a group of people who seem to need his help. My husband and I are both loving this thriller with a time travel/sci fi twist and can't wait to see what happens next.

The Crossing airs on Mondays on ABC. Eight episodes have aired so far in the 11-episode first season. You can catch up On Demand or on the ABC website (where episodes 4 through 8 are currently available for free and you can unlock the first 3 episodes by logging in with your cable password). It is also available on Amazon with the TV Season Pass or for $1.99 an episode (or $19.99 for the entire season). So, you could buy the first 3 episodes on Amazon and then watch the rest for free at the ABC website.

Sunday, May 27, 2018

Weekly Inspiration: My Son

You may have been wondering where I've been for the past couple of weeks, and why I haven't been posting much here (or on Twitter or Facebook)...we have been getting ready for a huge event and the subject of today's Weekly Inspiration...

Our son graduated yesterday from college with a Bachelor of Science degree in Environmental Engineering!! This would be a wonderful accomplishment for any young person, but he has had ME/CFS for almost 14 years (since age 10) and also has Lyme disease plus two other tick infections. He barely remembers a life before chronic illness, and the combination of these diseases has been devastating and, at times, incapacitating.

For the past six years, he has worked harder than anyone else had to in order to achieve this incredible milestone. He showed amazing persistence, taking 3 classes each semester (that's all he could manage), plus often taking a class during summer and winter sessions, so that some years, he had almost no time off all year. He remained committed and determined, even after most of his friends graduated two years ago. He hit some major roadblocks along the way: the year he caught the flu in November and was completely incapacitated for 3 months; the many times he crashed so badly that he had to come home for 2-4 weeks and then catch up on all the schoolwork he'd missed; and just last week, days before graduation, a professor told him he failed him for missing too many classes (despite his accommodation plan), which resulted in an incredibly stressful lead-up to graduation with visits to Disability and the Dean of Students (now you know why I've been too busy to blog!). The result of that fiasco was that he still needs to take one last elective this summer...but he did walk in the graduation ceremonies this weekend.

I am in awe of what he has done. I think back to my own college days - the most carefree days of my life! I was perfectly healthy (and took that for granted, of course), partied wildly on the weekends, and worked hard all week, graduating easily in four years, ready to start my adult life. I manage support groups, both online and locally, for families whose "kids" have ME/CFS and related conditions, so I personally know or know of thousands of young people struggling with these diseases, and I have huge admiration for all of them. I was 37 years old when I first got sick, and that was immensely challenging. I can't even imagine what's it like for all these young people, including my son, to grow up like this. Of course, some of them are too sick to even try school, but many of them, like my son, struggle every day, week, and month to do what other kids do effortlessly. It truly is awe-inspiring.

So, here's to my son, my inspiration, my heart, for this incredible accomplishment. His commencement speaker said something to the effect of "the important thing in life is not what you achieve but what obstacles you overcome to get there." Our son overcame one obstacle after another to achieve this goal that other young people might take for granted, and we are so proud of him!

I hope that you are inspired by his journey, too.

NOTE: If you are wondering how someone with all those diseases was able to manage college and graduate, check out my post on Effective Treatments for ME/CFS - it outlines the treatments that have worked the best for both of us over the years and those that have allowed us both to become more active and live semi-normal lives. If you have a teen yourself, you might also be interested in the post, How My Son Went from Couchbound to College, about the treatments that helped him that summer before college, when we were desperate to find what would work to allow him to start college on time with his friends (which he did), after he'd missed 90 days of high school his senior year.

Tuesday, May 15, 2018

TV Tuesday: Splitting Up Together

My husband is not a huge fan of sitcoms, but there are a few that I enjoy watching on my own at lunchtime. One new one I am enjoying is Splitting Up Together, starring two favorite actors.

Jenna Fischer, who played the beloved role of Pam in The Office, stars as Lena, and Oliver Hudson, who played Adam on Rules of Engagement (a hilarious show), plays her husband, Martin. Well, technically he's her ex-husband because they split up in the very first episode. They tell their family and friends that they have the perfect solution to make sure their break-up doesn't affect their three kids. They remodel their garage into an apartment and trade off weeks - one lives in the house and handles all responsibilities while the other lives a single life in the garage, and then they swap. Sounds simple, right? Of course, it's not, and all sorts of problems crop up from Lena's inability to give up control to Martin's jealousy when Lena begins dating.

This is a typical family sitcom - light and funny - with an original concept. I adore both Jenna Fischer and Oliver Hudson, so I enjoy watching them both on-screen, and their three children are also played by able young actors. Diane Farr, another favorite of mine from Numb3rs, also co-stars as Lena's sister. There are plenty of unique twists in this strange situation to provide sitcom laughs, and even some warmth and heart as Martin realizes what he lost and Lena rediscovers herself as more than wife and mother. There are the usual stereotypes in the characters - the controlling mom and the hapless dad - but it's a fun show and a nice escape when I need a few laughs. Ellen Degeneres is an executive producer on the show. Check out the trailer below to sample the show's sense of humor.

Splitting Up Together airs on ABC Tuesdays at 9:30 pm Eastern time. I watch it On Demand, where most episodes are still available, and all of the episodes are available at the ABC website for free. Episode 7 airs tonight, with 8 episodes planned for season 1, and there is a season 2 planned.

Thursday, May 10, 2018

What YOU Can Do for ME/CFS Awareness Day/Month

May 12 is International ME/CFS Awareness Day, which unfortunately falls on Mother's Day weekend again this year when we are always away visiting my mom, so I am posting this information today to help you prepare. The entire month of May is ME/CFS Awareness Month (and also Lyme Disease Awareness Month), so you can do a number of easy things to help raise awareness all month long.

There are lots of easy ways for you to help spread the word, including:
And I use this day/month to tell my friends and family about ME/CFS, too. I use my main Facebook account for just close friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May is the exception each year. Here is what I am posting on my Facebook wall for my friends and family:
"May is ME/CFS Awareness Month (and Lyme Disease Awareness Month). Most of you know that my son and I both have ME/CFS (and he has Lyme plus 2 other tick infections), but you may not know what that means, since the U.S. name, Chronic Fatigue Syndrome, is misleading. ME/CFS is a debilitating immune disorder that has dramatically changed our lives the past 16 years. If you see either of us out in the world or even just look at our photos on Facebook, you may think we live pretty normal lives...but that's why this is called an Invisible Illness. In reality, you only see us out and about when we are having a good day, and even then, we need a LOT of extra sleep, I can't get through the day without a nap after lunch, we almost always have symptoms, and we both have to carefully monitor and limit our activity levels. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. Even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days afterward. A simple infection like bronchitis can knock us out for weeks. But, we are the lucky ones. About 25% of those with ME/CFS are housebound or even bedridden. Worst of all, few people - and very few doctors - understand ME/CFS, so Awareness Month is really important to us. You can help to spread the word by sharing this post or clicking the link to learn more (you can also donate to ME/CFS research on that page). If you know a friend or family member who has or might have ME/CFS (or tick infections which have similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far."
Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask), here are some other ways to help further ME/CFS education and research - share these resources widely!
  • Learn more about ME/CFS. Here are some sources of information you can share with others:
  1. What is ME/CFS? by Solve ME/CFS Initiative
  2. An Overview of ME/CFS by Phoenix Rising
  3. The CDC's information on ME/CFS
  4. Our public testimony on pediatric ME/CFS at the 2011 CFSAC meeting.
  • You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know the economy has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities. I also set up a recurring donation for one of these of just $5 a month - easily affordable but not noticeable day by day!
  • You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
  • You can even earn money for CFS research when you use a search engine:
Happy Awareness Day/Month!  Help to spread the word!

(feel free to link to this page or share its information)

Tuesday, May 08, 2018

TV Tuesday: Instinct

My husband and I have been eagerly awaiting Instinct, a new TV show starring Alan Cumming (who we loved as Eli Gold on The Good Wife). We are now six episodes into this crime show with a sense of humor and are enjoying it immensely.

Cumming plays Dr. Dylan Reinhart, a seemingly mild-mannered college professor who teaches abnormal behavior, though it is revealed in the first episode that he used to be in the CIA. The show begins when Dr. Lizzie Needham, played by Bojana Novakovic, comes seeking Dylan's advice on a murder case. The killer has left a playing card at the scene of the crime, which was a theme Dylan used in his best-selling book on psychopaths, Freaks. Clearly, the killer is trying to get Dylan's attention, and Lizzie needs his help to track him down. Additional murders follow, and the two work together, running all over NYC, to find this serial killer. They do so well together that the NYPD asks Dylan to be an ongoing consultant for them, working with Lizzie when his expertise can help with a case. Dylan is reluctant at first - he left the CIA for a quieter life - but he loves solving puzzles and he enjoys working with Lizzie, so the two are soon partnered up.

As with most crime shows, Dylan and Lizzie face a new case in each episode, always involving some sort of abnormal psychology. Besides his expertise in that field, Dylan is also very observant, and he and Lizzie make a good team together. We are thoroughly enjoying this show so far. Cumming's character of Dylan is charismatic, mischievous, and very smart. Lizzie is also intelligent and likable. Best of all, the show has a great sense of humor (often bolstered by Dylan's grinning comments) - this is not a dark, brooding crime show. We look forward to watching it every week!

The first season of Instinct is airing on CBS on Sundays, with seven episodes aired so far (and a total of 13 planned for the season). We watch it On Demand, where the last four episodes are available. On the CBS website, you can watch the last 5 episodes for free or get all of them with a subscription to CBS All Access. You can also watch on Amazon for $1.99 an episode or $19.99 for the first season (right now, you could buy the first two episodes and watch the rest for free on CBS).

I can't wait to watch the latest episode tonight!

Also, if you are a fan of Alan Cumming, check out this short interview with Seth Myers - I had no idea he was Scottish!! He does such natural U.S. accents - Chicago and now NY - that this interview blew our minds.

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.

Wednesday, May 02, 2018

Groundbreaking EBV Research Sheds Light on ME/CFS

Cause for Celebration!
A new scientific research paper was just published in Nature Genetics Journal that could be the breakthrough that ME/CFS patients have been waiting for in pointing the way to better understanding - and treating - our complicated disease. The study was focused on better understanding the unique behavior of the Epstein-Barr Virus (EBV), the virus that causes mononucleosis/glandular fever and that is a factor in many ME/CFS patients' illnesses.

The paper itself is complicated, but journalist and ME/CFS patient Cort Johnson has, as always, done a great job of explaining the study in layman's terms in this article on the Simmaron Research site (an organization devoted to ME/CFS research). Click the link to read Cort's excellent summary of this research and what it might mean for ME/CFS patients.

I'll just summarize a few key points and leave the full explanation to the article.

First, there are some things that researchers already know about EBV's role in ME/CFS (some of this has been known for 20+ years):
  • EBV is one of about a dozen known infectious triggers for ME/CFS - that means that roughly 10% of the people who get mono/glandular fever (or one of the other known triggers) goes on to develop ME/CFS.
  • EBV is a unique kind of virus (in the herpes family) that remains in your body forever once you've had it. For most healthy people, it remains dormant or inactive but can be seen in blood tests in over 90% of adults.
  • Many ME/CFS patients' bloodwork shows that EBV has been reactivated in their bodies, even if they had mono decades ago. For instance, I had mono at age 13 but showed EBV reactivation after getting ME/CFS in my late 30's and 40's.
Researchers also knew that EBV has been implicated in many other immune disorders besides ME/CFS, including lupus and MS and other autoimmune diseases. This was news to me.

The excitement from this study is because it finally - for the first time - found out HOW exactly EBV is able to trigger immune disorders later in life, sometimes decades after it entered the body. In defining the mechanism of EBV's ability to reactivate and cause immune changes, this study has opened the door to all kinds of future research (and hopefully, treatments) on a wide range of diseases, including ME/CFS.

This is HUGE. Though experts understand some things about ME/CFS, the mechanism behind how it starts and continues has been a mystery - this new study provides a key that may lead to unlocking that mystery.

Even better news? Because SO MANY different and debilitating diseases have been implicated in EBV research, there will be plenty of interest - and funding - for further research into this promising area.

What can you do now?

This blog post explains all about the immune dysfunction at the heart of ME/CFS, including treatments that will help to improve your immune function (all those listed are simple, cheap, and easily accessible) and treating underlying infections, like EBV. That blog post also includes our own experiences in treating EBV and HHV-6, tick infections, and yeast overgrowth. Most people with ME/CFS have some sort of infections behind the scenes that either triggered their ME/CFS to start or are reactivated, and treating them often brings dramatic improvements. In fact, patients who say that no treatments seem to help them almost always discover there are underlying infections present. Once those are treated, then those patients often improve significantly...and then other treatments will also work better.

To help your doctor understand the need for testing, diagnosing, and treating underlying infections, share these resources with him/her:
Exciting news and hope for better times ahead!

Tuesday, May 01, 2018

TV Tuesday: Rise

On my own at lunchtime, I have started a new TV show: Rise, about a high school drama club in a small town. I'm enjoying it so far - it's kind of like Glee, only about drama and with a more serious tone.

Josh Radnor (well-known for playing Ted on How I Met Your Mother) stars in Rise as Lou, a high school English teacher in a small town in rural Pennsylvania. He volunteers to take over the drama club, which he feels has been stuck in an unimaginative rut - an opinion that the current head of drama club, Tracey (played by Rosie Perez), doesn't appreciate. The two of them end up teaming up to try to breathe new life into the school's plays. The problem is that, as in most small American towns, football is king and drama is treated as the ugly stepchild and gets little funding. Lou immediately makes waves with the principal, parents, and school board by ditching the same old tired plays and choosing Spring Awakening, a show that deals with all kinds of taboo topics relevant to teens. He and Tracey struggle to recruit enough kids to play all the parts, even convincing the star quarterback, Robbie, to try out when Lou hears his incredible voice (slightly familiar, Glee fans?). The show chronicles both the play production as well as the challenges of the families of key students. Lou's own son, Gordy, is on a wild streak and seems to have a drinking problem.

I always enjoy TV shows about high school - I was a total Gleek and absolutely loved Freaks & Geeks when I finally discovered it just last year - so I am enjoying Rise so far. It's mostly a straight-up drama, with scenes that include the kids practicing the play, and is as much about what happens outside of school as within those walls, touching on issues like sexual identity, gender identity, infidelity, divorce, single parents, teen drinking, and more. I've always liked Josh Radnor, and he does a great job portraying Lou's passion to make a difference. Rosie Perez is excellent as always, here in a multi-faceted role. The other actors playing parents, teachers, and kids are also very talented; it's a great ensemble cast. I'm interested to see where the show will go the rest of its first season.

I've watched five episodes of the 10-episode first season so far (episode 8 airs tonight at 9 pm on NBC). I watch it On Demand, and you can also catch up on past episodes at the NBC website for free. You can also watch it on Amazon for $1.99 an episode or $16.99 for the first season.

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.