Sunday, September 23, 2018

Weekly Inspiration: Coming of Age with Chronic Illness

Back in July, my article, Coming of Age with Chronic Illness, was published on the ProHealth website (at the link). I have reprinted its text in full below.

The article was based in part on our own experiences. Our sons both became ill with ME/CFS in late summer 2004, at ages 6 and 10. The younger one had milder ME/CFS for about 10 years and then recovered completely at 16. Our older son also got Lyme disease plus two other tick infections - which went undiagnosed for over 3 years - at age 12, so his journey has been more difficult. He is now 24 years old and just graduated from college. So, both of our sons came of age with chronic illness, though the younger one was far less affected by it.

I also reached out to an amazing community to get input for the article - our Facebook group, Parents of Kids/Teens/Young Adults with ME/CFS and Related Illnesses. They came up with some wonderful advice and tips that I incorporated into the article - I wish I had though of some of this stuff 10 years ago!

So, if you have kids who are chronically ill, this article is a must-read, with practical advice for helping them to mature and develop, even if they can't leave the house. And if you do have sick kids, you are welcome to join our support group mentioned above. It is solely for parents of sick kids (I use the term "kids" loosely - some of our members' kids are now adults but still dependent or semi-dependent). Just click the Join button for our group and then answer the questions that pop up so we can add you quickly. In the meantime, here's the article:

Coming of Age with Chronic Illness

When a child or teen becomes ill with ME/CFS, fibromyalgia, or tick infections, he or she faces many unique challenges in meeting typical growing-up milestones. My oldest son, now 23, has had ME/CFS since age 10 and three tick infections since age 12, so his illnesses have been an integral part of his coming of age. I have watched him struggle with things that come easy to his peers and fall behind in various ways, all while trying his best to live his life with these devastating conditions.

I asked the members of our Parents’ support group about the biggest challenges young people with chronic illness face as they grow and mature, and they came up with some great ideas to help overcome those challenges:

One of the biggest challenges of chronic illness at any age, staying connected is especially important during the formative years. Sick young people are often isolated from friends and spend much of their time with their parents. Some tips for staying connected with peers:
·      Find friends online. Join groups for young people suffering with similar illnesses. Look for others on social media who share your interests. Play your favorite games online.
·      Attend school as much as possible. By law, schools must provide an equivalent education in the “least restrictive environment.” Use an educational advocate to help your young person get what he or she needs: home education plus as much time with peers as is physically possible. One teen could only manage to go to school for lunch and art class, so her accommodations plan allowed that. My son took some classes at home and went to others in person when he was able to.
·      Stay in touch with old friends. Young people can text, message, or talk to friends. My son has spent many days on the couch Snapchatting with friends! Make a standing date with close friends. One girl had to switch schools, but her best friend still came to spend time with her every Friday. We hosted movie nights for my son and his friends – low-key but lots of laughs.
·      Siblings and cousins count, too! Connecting with siblings, cousins, and other family members can help. Don’t limit cousin time just to holidays – our sons have ongoing group chats with their cousins year-round.

Keeping Up with Peers
It is painful for a sick young person to watch his or her classmates (and younger siblings) achieve normal milestones – everything from learning to drive to having a girlfriend or boyfriend – while they feel left behind. This gets even tougher as they get older and friends leave to live on their own, start full-time jobs, and get married.
·      Take time to grieve. Let your young adults grieve for what they are missing. Acknowledge their feelings rather than dismissing them.
·      Work on meeting milestones in their own way. Maybe your son will need lots of 15-minute sessions in the car with mom or dad instead of driver's ed. There are lots of options for keeping up in school, including part-time or full-time homebound instruction and online classes, plus having the school waive all but the most necessary graduation requirements. Even homebound kids can learn how to pay bills online, write checks, and other adult skills.

Having a Purpose
When you are stuck at home, it is hard to feel engaged with the world around you. Try to focus on something outside yourself and find your own unique talents that fit within your limitations. Here are some ideas from other sick young people:
·      Get a pet. Having a pet accomplishes several goals, including caring for someone else, having a purpose, and learning life skills. One girl got a puppy and is helping her parents train him as a service animal.
·      Express yourself artistically. Sick kids can focus on developing talents and expressing themselves, with music, art, or graphic design. Some chronically ill young people post their creations online or even sell them.
·      Find an online audience. One girl started her own YouTube channel at age 12 and has grown it to over 80 thousand subscribers. Take advantage of your own interests in make-up, video games, fashion, or other hobbies and find your audience through social media.

Earning Your Own Money
That first job is a big milestone, an important step toward adulthood plus the exhilarating freedom of earning your own money. There are ways for sick kids to start their own businesses, even from bed!
·      Work as mom or dad's assistant. Teach your young person how to order supplements online, refill medications, pay bills, and do online research and then pay him or her to do some of these tasks. This could lead to a real job as an Electronic Assistant, a hot new field.
·      Turn creative hobbies into cash. Help find markets online for your young person's creations, through eBay, Etsy, and other websites. Search for "turn art into products" for loads of ways to make money from personal creations.
·      Start a small business. The opportunities to make money from home are endless. You can sell products or services, create online courses, and more. Check out the podcast, website, and book Side Hustle School for hundreds of ideas and tips to get started.
·      Apply for disability. Young people who are disabled and unable to earn their own money can apply for disability. One mom said, "It’s not a lot (of money), but giving her some financial independence has been really positive. In a world where she has so little control...this is a bit."

Delayed Development
Two developmental issues to consider: emotional development that comes from interacting with others and the physical development that healthy teens experience. Both can be seriously impacted by chronic illness. Some tips to consider:
·      Socialize as much as possible. See the tips above. Both online and face-to-face socializing will help with emotional development.
·      Be patient and recognize delayed development. Try not to get annoyed when your normally compliant 20-something begins to argue and rebel – these are good signs! He or she was probably too sick as a teen to go through the normal rebellious phase, so it's coming later.
·      See a doctor. These illnesses are known to cause endocrine (i.e. hormone) dysfunction, which sometimes affects development, including moods, growth, and libido. See an endocrinologist to check for primary endocrine disorders that can be treated, like thyroid dysfunction or low growth hormone. Also watch for signs of self-hatred or body dysmorphia – not unusual when you feel like your body is betraying you – that would indicate the need for professional counseling. 

Growing up while struggling with a chronic illness is a double-whammy, but there are things that you and your kids can do to help with development and maturity. In a life that often feels out of control, taking these small steps toward adulthood can make a big difference.

Tuesday, September 18, 2018

TV Tuesday: Goliath

My husband and I just finished watching season 2 of Goliath, an Amazon Prime original show starring Billy Bob Thornton.

Thornton plays Billy McBride, a talented but disgraced lawyer living in L.A. He drives an old convertible, drinks way too much, and takes on small cases, nothing like what he used to do in the huge law firm that he helped start. Little by little, we find out about the case that sent Billy into a tailspin. Meanwhile, Patty, a real estate agent and part-time lawyer played by Nina Arianda, approaches him to ask his help on a case: a woman whose husband was killed in an explosion on a boat. The man's employer, a large and powerful corporation and the Goliath of the title, claims it was an accident, but his wife suspects something far more sinister. Patty convinces McBride to take the case, and against his better judgement, Billy finds himself drawn into it. Tania Raymonde plays Brittany, a prostitute who Billy has helped in the past and who sometimes serves as his legal secretary. The large corporation they are suing is represented by Billy's old firm (another Goliath), now run by Donald Cooperman, Billy's old partner played by William Hurt, who is a creepy recluse who spies on his employees and holds a grudge against Billy. Maria Bello plays Michelle McBride, Billy's ex-wife who still works for his old firm.

The plot is intricate and engaging, as each episode goes deeper and deeper into the legal case and the circumstances surrounding the man's death, providing plenty of suspense. The cast is outstanding and really pulls this show up to a higher quality than most TV shows. Billy is a screw-up in many ways, but you can't help but like him, with his crooked smile and fervent belief in justice. The rest of his team is just as likable, while William Hurt's performance as Cooperman is the perfect bad guy you love to hate (he's super creepy). Season 1 of the show follows this case through to its conclusion.

In season 2, Billy and his team are back, though I won't say much more about their circumstances to avoid spoilers of the first season. This time, Billy is drinking more than ever but is asked by his friend Oscar, played by Lou Diamond Phillips, to represent his 16-year old son, who is being held as a murder suspect. Oscar is certain his son is innocent, and Billy has known the boy for years, so he reluctantly gets pulled into the case. This time, the Goliaths and conspiracies are even bigger, involving the police, a drug cartel, and politics. This second season was far more gruesome and violent, with a couple of really warped people at the center of things. My husband and I were joking about needing to watch something more uplifting after watching Goliath this season, like an episode of Breaking Bad! It's pretty dark. I definitely preferred season 1, though season 2 still had a compelling plotline. It's really worth watching just for Billy Bob Thornton. Interestingly, though season 1 was enjoyed equally by critics and viewers, Rotten Tomatoes shows that for season 2, critics rated it an average of 86%, while regular viewers gave it only 53%.

Season 1 and Season 2 each feature 8 episodes and are available exclusively through Amazon Prime (at the links provided).

Here is the trailer for season 1, to avoid any spoilers:


Wednesday, September 12, 2018

URGENT: Tell Your Reps to Reinstate CFSAC

A week ago, the U.S. Department of Health and Human Services made a startling and unexpected announcement: the charter for the CFS Advisory Committee had expired and would not be renewed. This was news to EVERYONE, including the committee's Chairman, Dr. Faith Newton (a close friend of mine and educational specialist whose son has ME/CFS) and the rest of the committee members. CFSAC had been in place since 2002, and its charter had been renewed every two years, as required, since then.

Further investigation revealed that CFSAC was the ONLY HHS Advisory Committee shut down, and its operating costs were less than $200k per year - this was not part of some big cost-cutting move. Pushed for a reason, the next day the HHS added that "The Department feels that the committee accomplished the duties outlined in its charter." That statement is so far from true as to be laughable. All members of the committee agree that it had many open items that either hadn't even been started yet or were in process.

For more details and history on CFSAC and this sudden closure, see Jennie Spotila's blog post at Occupy M.E., Rest in Power, CFSAC. As always, Jennie has explained it all clearly and thoroughly.

What Can You Do?
So glad you asked! Solve ME/CFS has put together a quick and simple form for writing to your Congressional reps to ask them to reinstate the committee - I did it earlier this week, and it only takes a few moments.  All the pertinent information is already written for you, though you can add a brief description about your personal situation if you like.

This is such an important issue - without that committee ME/CFS patients, doctors, caregivers, and researchers have no voice in how the HHS approaches ME/CFS.

Many of us - including myself and my entire family - have participated in past CFSAC meetings and given testimony to the committee. This meeting summary from 2011 includes a photo of the teens that came to the meeting and a video of our own testimony on pediatric ME/CFS and will give you an idea of the important role this committee played.

PLEASE, act today and fill in that quick form to let your Senators and Representatives know how important CFSAC is to us.

Monday, September 10, 2018

Movie Monday: Jurassic World

We had a little movie spree a few weeks ago when we enjoyed a 3-day staycation with our sons and then the following week, our niece came to visit. I'll mention the second movie first. One night, it was just me, my 24-year old son, and my 16-year old niece, and everyone was worn out and wanted to watch a movie - but what would appeal to both of them?? They have very different movie tastes. I ended up with a movie I'd already seen this summer, but I though they'd both enjoy: Game Night, starring Jason Bateman and Rachel McAdams (you can read my review at the link). Great choice! They both loved this unique movie that combines suspense and humor, and I enjoyed it a second time, too. It's still for rent on Amazon, if you're looking for a crowd pleaser!

So, going back to our staycation, we had another tough crowd to please because our sons don't always like the same movies. So, we reached back in time and watched Jurassic World - not the new one out this summer, but the one from 2015. We'd never seen it before, and everyone agreed on it!

Set 22 years after the events in the original Jurassic Park movie, this movie takes place on the original site, where a fully-functioning theme park called Jurassic World is now in operation. They've ironed out the problems and made the park safe (they think) for all the tourists that flock there to see real dinosaurs. Bryce Dallas Howard (Ron Howard's daughter) plays Claire, who is the busy operations manager of the park. Her nephews, Zach and Gray, come to the island to visit, and get a tour of the amazing facilities. The research side of the operation has been working on a hybrid dinosaur - bigger and scarier than any other they have - called an Indominus. Meanwhile, Owen (played by Chris Pratt) has been carefully training the raptors so that they recognize him and respond to his commands. Owen evaluates the new Indominus and its enclosure and doesn't think the exhibit should be opened to the public because it's too dangerous and not secure enough. And guess what? He's right - the Indominus gets out and goes on a killing rampage, chewing up workers, tourists, and other dinosaurs indiscriminately. Zach and Gray are out in the park, so Claire and Owen go in search of them.

It's a pretty predictable plot but lots of fun to watch - giant dinosaurs terrorizing people, right? Of course, both Howard and Pratt are fun to watch, too - wait until you see Howard run from dinosaurs in her stilettos! (seriously, kick off the damn shoes when a dinosaur is chasing you!) It's what you'd expect from this franchise - loads of action, suspense, thrills, and peril. We all enjoyed it - it's just pure fun escapism, which was just right for our staycation. I was surprised to read just now that this is actually #4 in the Jurassic Park movies - I guess I missed a couple of them in the middle. And by the way, if you've never read the original novels by Michael Crichton - Jurassic Park and The Lost World - you should! They are both excellent.

You can stream Jurassic World starting at $2.99 on Amazon or watch it on DVD.

Sunday, September 09, 2018

Weekly Inspiration: Who Are You, Really?

I've been thinking a lot lately about introverts vs. extroverts because I feel like chronic illness has changed me into an introvert. I've noticed lately that even though I feel better, crash less, and can do a lot more than in the early days of my illness, I still need plenty of quiet solitude. In fact, I'm working on a new article for ProHealth on this topic.

I found this TED Talk on a playlist called "For the Love of Introverts," and while the speaker, Brian Little, talks about introverts and extroverts, the talk covers a lot more than that. It's all about how to define who you are, using different kinds of criteria (introvert vs. extrovert is just one). In fact, one thing he talks about is how circumstances can change aspects of your personality...again, right along the lines of what I have been thinking about myself lately. Oh, and Brain is an excellent speaker and quite funny, too. Here's his TED Talk:

What do you think about Brian's system for defining who we are? I especially liked his last category of Idiosyncratic, to take into account our individual projects & interests and how circumstances can affect us. And, I did learn more about introverts and extroverts - watch for more on that subject as I finish my article. I'll share it with you when it's published. I think it is very important to know ourselves and understand our needs, especially when living a life defined in part by chronic illness.

Food for thought, right?

Tuesday, September 04, 2018

TV Tuesday: Fall TV Preview

It's September! And that means a new fall TV season is quickly approaching.

Here are some of our old favorites coming back, some new shows I'm excited to try, and a few disappointments of old shows that have been cancelled:

Old Favorites Coming Back

These are the shows we look forward to returning to in the fall, with expected start dates:

The Last Ship - 9/9/18 - We love this post-apocalyptic show starring Eric Dane (McSteamy) that has grown and evolved with each season - this year, it moves from summer to fall.

The Resident - 9/24/18 - We just started watching this new medical show last winter and although it has some flaws, we generally enjoy it (and especially its main cast members).

This Is Us - 9/25/18 - I watch this show on my own during lunchtime and love to laugh and cry with every episode! I can't wait to see what they do with season 3.

Grey's Anatomy - 9/27/18 - Season 15?? Yup, and we've watched it since season 1 and still love it! What other huge medical disasters and new couplings can they come up with?

Madam Secretary - 10/7/18 - One of the best shows on television, with an outstanding cast - suspenseful, intriguing, and even funny.

Blindspot - 10/12/18 - We've watched this fast-paced thriller for 3 seasons and are eager to see what's in store for Jane Doe next.

Favorite Shows That Got Cancelled
They're not coming back? Say it isn't so! These are worth watching the old seasons, if you haven't tried them yet:

Scorpion - Though it sometimes stretched the bounds of believeability, we enjoyed all 4 seasons of this suspenseful and funny show and will miss it in this fall's line-up.

Wisdom of the Crowd - Though it only aired 1 season, we loved this unique show about fighting crime with crowd-sourcing. Rumor is that allegations of sexual misconduct by Jeremy Piven, its star, (though he denied them) may have shut it down. I'm sorry to see it go.

Designated Survivor - My husband is going to be SO upset to hear this one isn't coming back. Though we both enjoyed this political thriller starring Keifer Sutherland, it was his favorite in the fall/winter line-up. Its 2 seasons are well worth watching.

New Shows We Plan to Check Out
I watched a lot of YouTube trailers tonight, and there are a few shows I am looking forward to trying.

Manifest - 9/24/18 - I can't wait to watch this one, about a plane full of passengers that went missing five years ago and suddenly reappears - oooh! Intriguing!

New Amsterdam - This looks pretty good, starring Ryan Eggold (Tom from Blacklist), but I don't know if we have room in our hearts (or viewing schedule) for a third TV medical drama.

A Million Little Things - A new ABC drama about a group of friends who are upset when one of their own commits suicide, along the lines of NBC's This Is Us, in terms of an ensemble drama. I will probably try this one on my own at lunchtime.

I Feel Bad - There are a whole slew of new sitcoms this season, but we don't watch too many of those (except Modern Family and Life in Pieces when our kids are home). I might try this one myself - the preview was pretty funny!

Those are the highlights for fall TV on our horizon.

What are YOU looking forward to this fall on TV?

Sunday, September 02, 2018

Weekly Inspiration: New ProHealth Article - Roll with the Punches

Many of you know that this has been a difficult year for me and my family, especially if you follow me on Facebook or Twitter. Although our chronic illnesses have been fairly consistent, we've had a series of serious and intense crises, one after another, causing emotional stress and financial strain.

A family member commented to me during one crisis that we were amazingly calm, given what was happening, and I realized that a life with chronic illness has taught our family how to manage when things go wrong, as they do in every life. The result is my latest article for ProHealth, Roll with the Punches, that describes one of our biggest challenges this year, how we coped, and some tips for what YOU can do when the unexpected happens to you or a family member. You can read the full article at the link.

Let me know your thoughts. Have you been through some unexpected problems? Did your "normal" life of chronic illness help you to be more calm and accepting? I'd love to hear your thoughts and stories in the comments below.

Hope you are enjoying this weekend (a holiday weekend in the US!). I'm trying to take it easy and relax - read a lot! - to help recover from the stressful resolution of another crisis earlier this week.

Sunday, August 26, 2018

Weekly Inspiration: Come Together

We had another successful get-together with our local chronic illness support group last night when we hosted a potluck dinner here at our house, with about 20 people. Some who attended were old friends, of the original five families that I gathered together over eight years ago, and some were new group members, struggling with their own or their children's illnesses or even still seeking a diagnosis. We talked for hours, shared our challenges and helpful advice with each other, and just laughed and enjoyed each other's company, too.

The adults and parents traded a lot of stories, experiences, and information, and the young people bonded. We had a new 21-year old young man here with his parents whose ME/CFS has recently forced him to greatly reduce his college work. He and my own 24-year old son hung out together in our basement. My son says they talked a bit about their illnesses, especially the isolation and challenges of being chronically ill with healthy friends, but they also just chatted about favorite TV shows, video games, and Pokemon! It can be incredible - sometime even life-changing - just to be able to relax with a friend who totally "gets it."

To read more about our own local group, Birds of a Feather describes how the group started and how I found those original other four families. That first local meet-up was just us moms (all with sick kids) at a local restaurant for lunch. That was followed by a second "mom's lunch" at the mall with another new family added, only this time some of our teens came along to meet each other. That was quickly followed by a family picnic, where all the kids and some husbands/fathers joined us, as well as two more families. That was a resounding success, and by then, we all felt like old friends (in addition to helping each other with treatments, doctors, school accommodations, and more). If you're still not convinced of the benefits of meeting up with others who are similarly sick, check out Party for Chronically Ill Kids, which always makes me tear up, thinking about how our kids bonded and what big a difference it made for them to meet others like themselves.

Our local group now includes more than 40 singles and families - some sick adults, like me, and some healthy parents with sick kids/teens/young adults - from five states (we live in Delaware, which is tiny!). Last night's get-together proved once again how powerful it is when patients and their families come together. One mom hugged me as she left and thanked me for hosting, saying it had been a life-changing evening for her - which is just what we all said those first times we got together!

Have I finally convinced you of the benefits of connecting with others locally? This article I wrote for ProHealth, Birds of a Feather: The Joys of Community, includes tips on how to find others nearby with the same or similar illnesses.

Now, go find your people!

Tuesday, August 21, 2018

TV Tuesday: Breaking Bad

It is quite possible that my husband and I are the last people on Earth to jump on the Breaking Bad bandwagon, but we finally gave it a try, after this popular show finished five seasons and won 147 awards! And, of course we were immediately hooked. We are now coming to the end of season three, and we are loving it.

So, in case you - like us - have been living under a rock, here's a quick recap. Bryan Cranston plays Walter White, a quiet, geeky family man who teaches high school chemistry. Walt's wife, Skyler (played by Anna Gunn), is expecting a new baby, and their teen son, Walt Jr., played by RJ Mitte, has cerebral palsy but is managing high school quite well. Then, Walter's world explodes when he finds out he has terminal lung cancer. Panicking and worried about what will happen to his family when he's gone (not to mention mounting medical bills), Walter remembers seeing loads of cash on the news when his brother-in-law, Hank, a DEA agent (played by Dean Norris), raided a meth house, and he also witnessed one guy escape from a raid when he did a ride-along with Hank. That guy happens to be an old student of Walter's, Jesse Pinkman, played by Aaron Paul. So, desperate to provide for his family before he dies, Walter partners up with Jesse, they get a rickety old RV, and Walter uses his expertise to set up an awesome meth lab. The two hapless criminals are surprisingly good at cooking meth, though they run into a LOT of challenges along the way.

I know this show sounds really dark - guy dying of cancer decides to cook meth - which is probably why it took us so long to try it, in spite of all the accolades, but it is really, really good - and has some surprisingly funny moments! It is definitely dark. Things rarely go well for Walter and Jesse, and there are some serious run-ins with major criminals in store for the pair, as well as other scary, unforeseen challenges. Both of them spin out of control at various times, as they get pulled deeper and deeper into the criminal world, all while Walt tries to hold his family together and keep his secrets. Most episodes, though, also make you laugh out loud, like the sight of straight-laced Walter cooking meth in nothing but his tighty-whiteys and an apron! This show is incredibly compelling - absolutely addictive. We kicked off watching it by binging the first season during Fourth of July weekend! Though you often want to shake some sense into Walt and Jesse, the characters and the show overall are complex and the plot is gripping. We are almost at the end of season three, and it just gets better and better.

If you also want to try Breaking Bad, all five seasons of the show are available on Netflix. But be warned, once you start, you won't be able to stop!

Monday, August 20, 2018

Movie Monday: Extinction

Last week, our young adult sons were home for a Staycation, after our camping plans got rained out. We had lots of fun and enjoyed several good movies! It's hard to choose a movie to appeal to all four of us, but the first one we chose was Extinction, a new Netflix original movie that we all enjoyed.

The movie begins with a man named Peter, played by Michael Peña, experiencing nightmares. In the dreams, he sees some sort of invasion from the sky, violence in the streets, and menacing figures attacking people. We see Peter go to work and interact with his wife, Alice, played by Lizzy Caplan, and their daughters, Lucy and Hannah. They seem like a nice family, and Peter seems like a good dad, though he is tortured by these nightmares that feel real and are becoming more intense and frequent. He comes to believe that they are premonitions, so he goes through the motions at work and at home, until his dreams begin to come true one night.

That's as far as I'm going with a plot description because the real excitement of this movie is its many unexpected twists and turns. There is some family drama, as Peter and his wife, Alice, argue about him working long hours and seeming distant, but there is a sense of dread imbued in the first part of the movie, thanks to Peter's increasingly disturbing nightmares. The rest of the movie is filled with action and suspense, like any disaster thriller, but also plenty of surprises. We all enjoyed it, and even my son and husband - who both always (annoyingly) correctly predict what's coming in suspense movies - were  surprised by some of the twists in this one.

Extinction is showing exclusively on Netflix.

Sunday, August 19, 2018

Weekly Inspiration: Laughter is the Best Medicine

My older son, who has had ME/CFS for 14 years and three tick infections for about 12 years, is fond of saying, "Laughter really IS the best medicine, Mom!" While he was growing up, he and I frequently put this old adage to practical use. When he was badly crashed and home from school (which was a LOT some years), he and I would get videos from the library or watch old comedy TV shows on TVLand. I Love Lucy was one of our favorites - guaranteed to bring on belly laughs and make us both feel better. Our favorite episode was the one where Ricky thinks he's losing his hair, so Lucy does all these bizarre homemade cures for him - hilarious!! Here's a brief clip from that episode - it still works - my husband is asking what's so funny!

And even though my son had NO idea who Carol Burnett was, he proclaimed that this was the funniest thing he'd ever seen (he still thinks so) when I shared this clip of Tim Conway's dentist sketch from The Carol Burnett Show:

For some more recent TV shows that will tickle your funny bone and make you forget your worries for a little while, try these (my review and a trailer are at each link):
  • The Letdown, an Australian comedy about a new mom, had me laughing out loud and will especially appeal to anyone who's a parent.
  • The Marvelous Mrs. Maisal, an Amazon original show, has plenty of warmth and drama but is also very, very funny, about a woman in the 1950's who wants to do stand-up comedy. I can't wait for season 2!
  • BrainDead, available on Amazon Prime, is a very weird but hilarious show that combines political satire and aliens (really!). My husband and I laughed through its first and only season last summer.
I also love to watch movies that make me laugh - a great pick-me-up on a crash day! Our all-time favorite "laughter is the best medicine" movie is Planes, Trains, and Automobiles, which we can just about recite by now, but that just makes us laugh even harder!

A few other (more recent) funny movies to pick you up when you're feeling down:
  • Game Night starring Jason Bateman and Rachel McAdams surprised me by how funny it was. It's a mystery/thriller but with lots of laughs.
  • Hello, My Name is Doris stars Sally Fields as an aging eccentric who has a crush on a young hot guy at work. My two friends and I loved this warm, funny movie.
  • St. Vincent stars Bill Murray as a grumpy old man who gets roped into babysitting, with lots of laugh but also some poignant moments, too. My husband and I both enjoyed it.
And for those like me who are avid readers, there is nothing better than a book that makes you laugh out loud but is also warm and uplifting. Here are a few of my recent favorites:
  • My Ex-Life by Stephen McCauley - an insightful and very funny novel about a gay man who moves in with his ex-wife and her daughter. I had the pleasure of reviewing the book, interviewing the author, and then meeting him in person. I am now looking forward to reading some of his earlier novels!
  • Be Frank with Me by Julia Claiborne Johnson - a quirky, warmhearted, and hilarious novel about a unique little boy who bonds with his caretaker. My book group enjoyed it very much.
  • The Impossible Fortress by Jason Rekulak - a very fun, poignant, and laugh-out-loud novel about a couple of kids who enters a computer programming contest in the 1980's - a must-read if you grew up in the 80's!
I could go on and on all day, but I want to hear from YOU - what are your favorite TV shows, movies, and books that make you laugh and provide a good pick-me-up on a bad day?

Thursday, August 09, 2018

Failed Treatment Trial for Me: Berberine

Constant low blood sugar headaches made berberine a no-go for me.
About a month ago, I wrote here about new-to-me (and one entirely new) treatments for ME/CFS. I have since tried one of those treatments for myself, but I had to stop within a week due to side effects, so I wanted to report back.

As I explained in that earlier post, I'd read this research article on the antifungal effects of berberine, which is sold as a supplement. That same week that I wrote the post, I started taking berberine since chronic yeast overgrowth is a long-term problem for both my son and I, as it is for many patients with ME/CFS. My doctor had given me the OK, and the research seemed promising. I also read that berberine was excellent at reducing cholesterol and triglycerides, which would also be an added benefit to me, since mine are often borderline, and the medications and supplements used to treat high triglycerides are contraindicated for Orthostatic Intolerance (because they dilate the blood vessels, worsening OI and thus worsening most ME/CFS symptoms). So, I had high hopes for my berberine trial. My one concern, as I explained in that earlier post, was that I also read that it could reduce blood sugar, and like most patients with ME/CFS, I already have low blood sugar. I was right to be concerned.

I bought a bottle of 500 mg capsules of berberine and began with two a day. Its effect of lowering blood sugar was immediately obvious to me. Right from that first day, my low blood sugar got much worse, and I got a killer headache both before lunch and before dinner when my blood sugar was at its lowest. I reduced my dose down to just 1 pill (500 mg) a day and tried to keep up small snacks during the day, but the low blood sugar and resulting headache continued. In fact, I quit taking the berberine completely after a few days, but the nonstop headache continued for a full week. I was hugely relieved when it finally wore off.

I did read about one doctor who recommended a dose of only 200 mg, instead of 500 mg, but my reaction was so intense that I don't think I will try it again. I may try some new varieties of probiotics instead. There are a few I have heard about from other patients that sound worth a try. I'll let you know!
Just a reminder - this is the last week for endorsements for the WEGO Health Awards! I have been nominated for a Patient Leader Hero Award, so please click the link to my profile page and then click on Endorse Sue Jackson to show your support for my blog, the support groups I have started, and my other work to reach out and help other patients. It only takes a moment. Thank you!

Monday, August 06, 2018

Movie Monday: How It Ends

Last weekend, my husband and I were in the mood for a movie, so we watched How It Ends, a suspenseful, action-packed, thoughtful apocalypse film that kept us glued to the screen.

This disaster/road trip movie starts fast and keeps moving. In the opening scene, Will, played by Theo James (who played Four in the Divergent movies), is in Chicago, talking to his girlfriend, Sam, played by Kat Graham, on the phone. She is in Seattle, and he is headed home today, but while they are talking, he hears strange sounds through the phone, Sam says something is wrong, and then the connection cuts out. Unable to reach Sam again and hearing disturbing reports on the news of a huge seismic event off the West Coast, Will heads to Sam's parents' house, even though Sam's father, Tom, doesn't like him. Tom, played by Forest Whitaker, is ex-military and has high standards for his daughter. But with Sam's life apparently in danger and all planes grounded, the two men set aside their differences and head west in a car, while Sam's mom goes to stay with their son. Thus begins an epic cross-country road trip, while a series of cascading disasters unfolds around them. Mega storms, fires, and more bombard the travelers, as they get closer and closer to the center of the apocalyptic disaster. Plus, they have to deal with other people they meet along the way, some of whom are kind and in need of help themselves, but others who are taking advantage of the situation. It's a harrowing survival situation, and as the two drive westward, they gradually and grudgingly begin to bond and respect one another.

This apocalyptic disaster movie features nonstop action and plenty of suspense. Anytime you think the pair will be OK, some other unexpected challenge suddenly pops up. There is a fair amount of violence, but it is also a thoughtful movie, focusing in on the emotional relationship between Will and Tom as well as the physical challenges they face. The disaster itself is never fully explained, though all kinds of theories have popped up on the internet since it came out. It's a nail-biter thriller that certainly kept our attention, and the acting is excellent. We both enjoyed it.

How It Ends is a Netflix original movie, so it is available exclusively on Netflix.

Sunday, August 05, 2018

Weekly Inspiration: ProHealth - Coming of Age with Chronic Illness

Happy weekend! Summer has been so incredibly busy around here, with my adult sons in and out, all kinds of crises, and some travel (though very little actual vacation time!). I hope to post more on the blog in the fall.

Today, though, for my Weekly Inspiration post, I wanted to share my latest article, published this week on the ProHealth website: Coming of Age with Chronic Illness. You can read the full article at that link.

This is a topic near and dear to my heart, as my oldest son - who's had ME/CFS for about 14 years and 3 tick infections for the past 11 years - just graduated from college. He was mostly couch-bound during his last two years of high school and worked hard for six years to get an engineering degree. Besides our own experiences, for this article I also reached out to the wonderful group I run on Facebook for Parents of Kids & Teens (and Young Adults) with ME/CFS and Related Illnesses. Everyone agreed that maturing and becoming an adult with illnesses that are so limiting carries with it huge challenges, and the parents in the group came up with some great ideas and tips for helping your teen and young adult kids. I wish I'd read their advice about 10 years ago!

If you have sick kids, of any age, you might also be interested in an earlier article I wrote, When Your Kids Are Chronically Ill, which includes coping strategies for both sick kids and their parents.

And if your kids are healthy, but you are the one who is chronically ill, then check out The Challenges of Being a Sick Parent.

Finally, if you are wondering HOW my son managed to get through college with ME/CFS and 3 tick infections, it was due to our relentless (and somewhat successful) search for treatments that would help. He and I have both improved significantly and can now live fairly active, semi-normal lives again. This post on Effective Treatments for ME/CFS summarizes the treatments that have helped us the most, with plenty of links to more information.

I hope you are enjoying a lovely weekend, and that this information helps to inspire you and your family to improve your lives with chronic illness.

P.S. If you want to join the Facebook group, Parents of Kids & Teens (and Young Adults) with ME/CFS and Related Illnesses, please answer the questions that pop up after you click "Join" - that is the only way we have now to screen potential members (the group is for parents of sick kids (of all ages) only). We also have a separate group for teens and young adults who are sick, Teens with ME/CFS and Related Illnesses.

Monday, July 30, 2018

Movie Monday: The Incredibles 2

We lost power for a few hours on Saturday, so we escaped to the a/c in the local movie theater! Much of what is playing now are the typical summer blockbusters - sequels of action movies filled with car chases and explosions - not really my kind of thing. So, instead, we watched The Incredibles 2, the sequel to an old favorite animated movie from when our kids were young. Yes, we have now graduated to going to children's movies without children! Just like the first movie, it was clever, funny, action-packed, and a lot of fun.

It's been 14 years since The Incredibles first hit theaters, but the original cast is back in this wonderful sequel. In case you somehow missed the original, it's about a family of superheroes, taking place in a 50's/60's style but modern world where superheroes have been outlawed because of the collateral damage they often cause while saving the day. As in the first movie, mom Helen (played by Holly Hunter) and dad Bob (played by Craig T. Nelson) are trying to act like a normal family and keep their superpowers under wraps. Teenage daughter Violet (voiced by Sarah Vowell) and over-active son Dash (voiced by Huck Milner) also have powers, as does baby Jack Jack (which the family doesn't know yet, though the audience does). The sequel begins with a major crisis, as the Underminer, voiced by John Ratzenberger, causes big problems in the city with his mole-like digging machine. Elastigirl (Helen) and Mr. Incredible (Bob) stop the rampage but not before the Underminer gets away and lots of that collateral damage occurs. Things change, though, when they are approached by a tech mogul named Winston Deaver, played by Bob Odenkirk, and his sister, Evelyn, played by Catherine Keener. They want to change the laws outlawing superheroes and have a plan for Helen and Bob to help them - all they need is some good PR!

As with the first movie, everything here is super-clever (pun intended!) and happens on two levels: one for the kiddos and one for the adults. Helen goes to work as Elastigirl, while Bob stays home with the kids, so there are the expected "inept dad left with the kids" jokes (only this time it's a superhero dad), but everything is executed perfectly, with plenty of suspense and lots of laughs. It's an intriguing plot with lots of twists and turns, and of course, this all-star cast is wonderful in their roles. Our favorite character, superhero costume designer Edna (voiced by Brad Bird), is back and even funnier, along with best super buddy Frozone, voiced by Samuel L. Jackson. Of course, the animation is top-notch, and the settings - a combination of high-tech and 50's/60's style - are a lot of fun. Whether you have kids to bring along or not, The Incredibles 2 is nonstop fun from beginning to end, with the cleverness and humor you expect from Pixar. Oh, and the animated short at the beginning of the movie, Bai, was excellent as well - and right on the mark for two parents with young adult sons like us!

The Incredibles 2 is currently in theaters (click Fandango below to check times and locations near you). Streaming (now available for pre-order) and DVD will be released in October 2018.

Tuesday, July 24, 2018

TV Tuesday: GLOW

After hearing rave reviews of the Netflix series GLOW for more than a year - and more raves when the second season was recently released - I finally found time to try it and was instantly hooked on this show about a group of women starting a women's wrestling TV program in the 1980's.

Ruth, played by Alison Brie of Community and Mad Men fame, is an out-of-work actress having an affair with a married man and struggling with her life. Her best friend (who she has a serious falling out with in an early episode) Debbie, played by Betty Gilpin, is also an actress who had an ongoing role in a soap opera and is now at home with her baby. Ruth goes to a casting call at an LA gym and realizes it's not a typical acting job. The director, Sam, played by stand-up comic Marc Maron (here with an awesome 80's mustache) is looking for women to star in a new low-budget TV show, GLOW - Gorgeous Ladies of Wrestling. It's meant to be a female-centered spin-off of the popular men's wrestling circuit, with stars like Hulk Hogan. Most of the women hired are a bit reluctant but in need of work, but after a while, they all begin to get into the spirit of it, as they figure out their characters and costumes and learn fake wrestling moves. Along the way, Ruth and the other women gradually get to know each other better.

If you are thinking - like I did this past year - that you're not interested in wrestling, you should still give this show a try. It is really about the women, their lives, and their relationships with each other. The 1980's are perfectly captured here - with the real clothing and hairstyles that we wore back then (as opposed to some of the over-the-top depictions of the 80's we often see on the screen). I noticed Ruth wearing the same Reebok hightops I treasured! But it's more than just a fun recreation of that time; the show also focuses in on issues like women's rights, racism, and equality - not in a hit-you-over-the-head way, but in a way that makes you think. Despite its serious moments, this show is also a LOT of fun to watch with the costumes, the moves, the shows, and the music. It is taking me back to the 80's and making me laugh, smile, and think. I finished season 1 and have just started season 2 (which many viewers say is even better).

GLOW is a half-hour Netflix original program, so it is available solely on Netflix.

Have you watched GLOW yet?

P.S. Ruth also drives my beloved car (that I still drive today!) - a VW convertible, though hers is yellow and mine is red. How could I not love this show?

Sunday, July 22, 2018

Weekly Inspiration: Small Joys in Everyday Life

Today's Weekly Inspiration features a book recommendation, and a favorite quote from that book.

This spring, I had the wonderful opportunity to review a new novel, My Ex-Life, by a prolific author I'd never read before, Stephen McCauley. I also interviewed Stephen and thoroughly enjoyed our conversation, and then met him at Booktopia, a book event held in Vermont every May. I absolutely loved the novel, which was engaging and combines insights into human nature and life with plenty of laugh-out-loud humor. And the author was just as warm, funny, and charming as his book. You can read my review here and my interview with Stephen here on the Shelf Awareness website. So, if you enjoy reading fiction, I highly recommend My Ex-Life...and now I am excited to read some of Stephen's earlier novels, too.

I wrote a bunch of quotes from the novel into my Quote Journal - Stephen just has a way with words and many of his sentences and passages are either insightful or hilarious (or sometimes both). Here's the one I want to share with you today that expresses my own views:
"Julie had always believed that even if it's the big, unexpected events (good and bad) that make life memorable and exciting, it's the small, predictable routines that hold life together and make it worth living."         
          - from My Ex-Life by Stephen McCauley

(and if you want to see a sample of Stephen's humor, my review includes one of his humorous quotes!)

I love this sentiment and heartily agree with it. I think this is something I didn't recognize until after my illness (though having kids helped me realize its truth, too). I have especially noticed this in looking back over old photos - the holidays and vacations and big events were wonderful, and I am glad we have so many photos of those, but I wish we had more photos (and video) of just normal daily life when our kids were little.

As for my life now, this statement is especially true of life with chronic illness. The big events are often overwhelming for me and challenging, and I often have mixed feelings - excitement but also dread and fear at the same time. But I look forward every day to the "small, predictable routines" of my daily life - the cup of herbal tea every morning by the window, taking a walk around my neighborhood and admiring the flowers and changing seasons, sitting in my recliner working on a writing assignment, setting my laptop aside at 7:30 pm each night to lie on the couch and enjoy two TV shows with my husband. Rather than being boring, these routines bring me joy!

In fact, I wrote an article for ProHealth (and wrote many times here on my blog) about Finding Joy in Every Day, where I discussed exactly this idea, including my Joy Journal habit. I find it comforting that even when I can't participate in the bigger events - have to cancel out of an evening out or a family weekend - I know that these quiet joys are here for me, every day. I think I appreciate them much more now than when I spent all my time running around before I got sick.

What are the small, predictable routines of your life that bring you joy?

Friday, July 20, 2018

ME/CFS Research Update - July 2018

Busy around here lately - just back from a whirlwind double-reunion (college and family) trip to New York state - but I am trying to post research updates more frequently so that I don't just leave a bunch of open tabs in my browser for weeks!

Research news the past few weeks brings a lot of hope for a better future for ME/CFS patients! A few highlights:
  • Possible ME/CFS Diagnostic Test with 84% Accuracy - This is HUGE news out of Columbia University (which has done other ground-breaking ME/CFS research in the past). Studying 50 ME/CFS patients and 50 controls, researchers found 562 metabolites (byproducts of metabolism) that the ME/CFS patients had in common. Combining these results with those of a previous study, they came up with a predictive model that identified the ME/CFS patients with 84% accuracy (that's far better than Lyme testing currently!). Not only do we desperately need a diagnostic test for this disease (population studies estimate that at least 85% of patients are not diagnosed), but this study also adds to the body of knowledge as scientists come to understand our complicated condition better and better. You can read the details of this study here (an article in layman's terms).
  • Testing the Microbiome Hypothesis - Also out of Columbia University, Dr. Ian Lipkin (a renowned virologist who has devoted his work to untangling the mysteries of ME/CFS) is testing his theory that the root cause of ME/CFS is in the gut/microbiome. Since ME/CFS is an immune disorder, and much of the immune system is in the GI tract, this theory makes sense. Lipkin's group, The Center for Solutions for ME/CFS, will test this theory as part of a $9.6 million, 5-year research program funded by the National Institutes of Health (NIH). Part 2 of this program will investigate changes in patients' immune systems, using a new technology. This excellent blog post from ME/CFS Research Review  explains all about these two parts of this exciting program. These are the kinds of funds and extensive research that was completely missing from the ME/CFS world just five years ago...look at us now!
  • Stanford Study Looks for the Immunological Basis of ME/CFS - And on the opposite coast of the US, Ron Davis has also received a sizeable NIH grant for an extensive study of the immune system dysfunction at the heart of ME/CFS, using cutting-edge technologies at the Stanford Genome Center. Unraveling the specifics of our immune dysfunction is the key to unlocking the mysteries of our complex disease. Ron Davis is at the center of the ME/CFS research community, and this new NIH grant adds to another $6 million from two other sources for his work earlier this year. Things are definitely looking up for the ME/CFS world! You can read a summary of this planned research and/or watch a video explanation in this article from ProHealth.
  • New ME/CFS Collaborative Research Center at Harvard Medical School - But wait, there's more! As if Columbia and Stanford weren't impressive enough, The Open Medicine Foundation just funded $1.8 million to Harvard Medical School for a research center for ME/CFS, which further builds the growing integrity of our disease in the medical community. The team there will start with a focus on the muscles, building off the previous work of David Systrom of Harvard in exercise testing of ME/CFS patients. The new center will also set up a Clinical Trials Network at Mass General - clinical trials? A dream come true for ME/CFS patients! You can read more about the new center, the researchers, and their projects in this ProHealth article.
LOTS of good news to share on this Friday afternoon - now you can enjoy your weekend, full of hope for a brighter future!

P.S. I've been nominated for a Patient Leader Hero award by WEGO Health! I would greatly appreciate your support. Just click this link and click on the Endorse Sue Jackson button. It only takes a moment, and your vote of confidence will help me move ahead to the finals. Thank you!