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!

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!

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.

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?

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!

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.

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.