Monday, November 12, 2018

Movie Monday: Ricki and the Flash

I had a brief (very brief) respite in my 5-week long crash on Friday, so I made it to my local library - woohoo! Crazy times. I noticed a few people browsing the DVD section, and I realized we haven't borrowed DVDs from the library in years! Between Netflix and Amazon providing movies without leaving home, and a Redbox a couple of miles away, we'd gotten out of that old habit. So, I grabbed a couple of movies for the weekend. That turned out to be a good idea, since my improvement was short-lived, and I felt awful again by Saturday morning. Needing a pick-me-up, we watched a fun movie with a great soundtrack from a few years ago, Ricki and the Flash.

Meryl Streep stars as Ricki (whose real name is Linda), an aging rock 'n roller who left her young family many years ago to follow her dreams in California. She did put out one album but never really hit the big-time. Now, she and her group, the Flash, are the house band for a small but lively bar in California. Her lead guitarist, Greg, played by Rick Springfield (!), is her partner in music and would like to also be her partner in life, but Ricki keeps him at a distance. When Ricki gets a call from her ex-husband, Pete, played by Kevin Kline, that their daughter, Julie, is in bad shape after her husband left her, Ricki gets on a plane. Julie is played by Mamie Gummer, who is actually Meryl Streep's real-life daughter, so their pairing on screen as mother and daughter certainly feels real. Ricki aka Linda is not exactly welcomed home by either Julie or her two grown sons, but she sticks it out and little by little, begins to repair years of damaged relationships and get to know her daughter again...and maybe even help her.

I really enjoyed this movie! Although it might sound odd at first that Meryl Streep is playing a rocker, she's actually (big surprise) wonderful in the role, completely inhabiting it, as she does all of her roles. Kevin Kline is also great (and funny) as the super straight-laced Pete, and it's easy to see that Mamie Gummer gets her acting chops from her famous mom - she does a wonderful job playing the damaged Julie who slowly comes back to life. Ricki's band plays a mix of 70's rock and newer songs, so it's always fun when they take the stage. There is also plenty of emotional depth here, as the estranged family gets to know their missing mother once again, bit by bit. It's a fun, warm, musical, and funny film that is very entertaining. A perfect cheer-up movie for my sick week.

You can stream Ricki and the Flash on Amazon, starting at $2.99, or buy the DVD (or borrow it from your library!)


Sunday, November 11, 2018

Weekly Inspiration: The Kindness of Strangers

Blanche DuBois famously said in A Streetcar Named Desire, "I have always relied on the kindness of strangers."
That quote is in my head this morning, as I check social media and see an outpouring of support from other patients that is incredibly heartwarming. I am starting week 5 of a severe crash and had an especially rough time this week, having to cancel a long-planned trip to my mom's and wracked with aches and exhaustion so bad that I couldn't even sit up most days. These kinds of severe weeks- or months-long crashes used to be common in the early days of my illness, especially at this time of year, but they have become extremely rare, thanks to a number of treatments that have helped me. In fact, I was only crashed for a total of 3% of the days (just 11 days) last year! That's made this crash even harder for me to deal with, since I am so out of practice.

I wasn't online much this week, unable to sit up and recognizing that even using my laptop while lying down wears me out and is not truly resting. But a few times each day, I would pull the laptop onto my lap, check my e-mails for anything urgent, and check Twitter, my blogs, and the Facebook page for this blog just for fun. And every single time, I was blown away and cheered up by the support from other patients during this ongoing crash. When you feel so isolated and - let's face it - sorry for yourself, knowing that there are other people out there who not only get it but are rooting for you makes all the difference in the world.

If you haven't yet connected to other patients in this way, I highly recommend it. You can join Twitter or Facebook with a pseudonym just to interact with patients, if you prefer. There are pages on Facebook, like mine, focused solely on living with chronic illness, and there are hundreds of groups where you can interact with others like yourself. I run one for Parents whose kids (including teens, young adults, etc) have ME/CFS and related illnesses. Myalgic Encephalomyelitis Global is a nice general patient group. And you can find over a hundred other groups specific to ME/CFS at #MEAction Network. If you have other conditions, look those up, too - there are groups for everything!

I did manage one quick post earlier this week by compiling together some older blog posts: Surviving a Crash - A Look Back in Time. These helped me and I hope they will help you, too!

That's enough blogging for me today. I just wanted to say THANK YOU to everyone who has reached out to me the past few weeks and let you know that you have made a real difference in my life.

Thursday, November 08, 2018

Surviving a Crash - A Look Back in Time

Couch, sweats, blanket, book & herbal tea = REST day!
I am now in my 4th week straight of being badly crashed - something that has become extremely rare for me in recent years, thanks to OI treatments and treating immune system dysfunction to prevent virally-triggered crashes. In fact, I hit an all-time low last year of being crashed and unable to function only 3% of the time all year! That's WAY down from a high of being nonfunctional 25% of the time back in 2007. So, this current, unexplained crash has hit me very hard, and I am out of practice dealing with crashes, so it's also been frustrating!

I don't have the mental energy or physical stamina to actually write an original blog post, so here are a few of my favorites on the subject of crashes from the past - enjoy!
  • The Boring Sameness of Crash Days - ugh, I am really feeling this one today! I have a looong list of things that need to get done, and I am unable to do any of them. I have been reading a lot and trying to stay off the laptop (not very successfully, as you can see!), but that boring sameness is starting to get to me.
  • Feed a Crash - ha ha This is a classic but still true today! For some reason when I am crashed, I want to EAT. Ironic since I am burning no calories and unable to exercise at all.
  • Living the Horizontal Life - describes a situation very much like I found myself in this week where I finally stopped fighting the crash and trying to get stuff done and just gave into it and focused on really resting. Also, a nice reminder in this post not to wallow in self-pity because I still have plenty to be grateful for - even more so now, when crashes like this have become so rare.
  • Need a Laugh? - my son always says that laughter is the best medicine! This week I have been getting my laugh on listening to Trevor Noah's memoir, Born a Crime, on audio, which is warm, moving, insightful, and very, very funny about his childhood in South Africa as a mixed race child. This old post features 3 links to hilarious websites that never fail to get me belly laughing - all three are still favorites of mine today!
One other thing that occurred to me reading these old blog posts is that I am SO fortunate to be able to just lie on the couch and rest when I need to now. Back in those days when I wrote most of those posts, one or both of my sons was also crashed or at least battling ME/CFS, so no matter how bad I felt, I still had to take care of them, drive them back and forth to school to catch a class or two, etc. They are in their 20's now (and one is fully recovered), so the mostly empty-nest means I can take care of myself when I need to. Something else to be grateful for!

Sunday, November 04, 2018

Weekly Inspiration: New Article on Extrovert/Introvert

So, once again this week, my apologies for still not posting the promised follow-up part 2 to my part 1 post, Challenges in Diagnosing Orthostatic Intolerance, on challenges in treating OI. It's coming, but I have still been badly crashed - about 3 weeks now. This is all very puzzling to me because although weeks-long (or months-long) crashes used to be common for me, especially in fall and winter when infections are all around, triggering my immune system to go even more out of control than usual, with treatments, these kinds of crashes (all kinds, actually) have become quite rare. I really can't remember the last time I was down for this long. I am heading to my mom's this week (fingers crossed that I feel well enough to manage it), so I hope to finally get that part 2 post on OI written after I get back.

I have been trying hard to listen to my body (a challenge because I'm out of practice!) and resting. I spent much of my week horizontal and just couldn't handle complicated writing projects (luckily, I was caught up on my paid freelance work).

So, here is a link to an article I wrote for ProHealth that was recently published: Has Chronic Illness Turned Me Into an Introvert? (read the full article at the link). This one is very relevant to me with the way I've been feeling - I have been needing my quiet alone time even more than usual!

I'd love to hear your experiences. Do you now crave quiet solitude and maybe feel a bit anti-social? Do you feel like chronic illness has changed you in any way?

Tuesday, October 30, 2018

TV Tuesday: You

You is a new drama on the Lifetime network (which I rarely watch) that surprised me and is perfect for this creepy season! It's a romcom that soon turns dark.

You begins as a sweet romcom when pretty MFA grad student Guinevere Beck, who goes by Beck, played by Elizabeth Lail, walks into a bookstore and hits it off with the cute bookstore manager, Joe, played by Penn Badgley. It's clear the two have chemistry and share a love of books - so sweet! Very quickly, though, we find out that Joe has a dark side, as he begins to stalk Beck to learn more about her so he can woo her. This is not just checking out her Facebook page (though he does that, too), but following her, looking through her windows, and cloning her phone so he can track her every move. Creepy? Oh, yeah...and it just gets worse. I won't ruin all the dark surprises in this show, but Joe is seriously twisted and has his heart set on Beck. And his strategy works! The two begin to date and get closer, as Joe secretly does more and more seriously dark stuff behind the scenes to remove obstacles to their relationship.

I expected a romcom, so this show surprised me, but I am enjoying it. It has a dark sense of humor, suspense, and increasing tension with each episode. Lail is adorable as Beck, and Badgley is deceptively charming on the outside as Joe, with a dark underbelly, though Beck has some secrets of her own. It's just a fun show that is completely original. I've watched six episodes so far and am looking forward to the rest of the season. And it looks like a second season is planned for 2019!

You is currently airing on Lifetime, with all episodes available free On Demand or on Lifetime's website. It is also available for $1.99 an episode or $18.99 for the season on Amazon.

Monday, October 29, 2018

Movie Monday: A Star Is Born

My friends and I had been trying to find a day when the three of us could all go to see the new remake of A Star Is Born, but it took us three weeks to get our schedules (and the stars) aligned. It was worth the wait. Though I expected to like it, this powerful movie - and its music - just blew me away.

As I'm sure you've heard by now, Bradley Cooper and Lady Gaga are the stars in this version, in the roles most recently played in 1976 by Kris Kristofferson and Barbra Streisand. Cooper plays Jack, a rock country music star slightly past his prime who still brings in massive crowds. Gaga stars as Ally, a down-to-earth waitress who dreams of being a star, though she's been told by many people in the music business that she doesn't have the looks for it. In the opening scenes, she sings at open mic night among drag queens in a dive bar. Cooper, an alcoholic always looking for another drink, happens to spot the tiny bar on his way home from a concert and asks his driver to pull over. Wowed by Ally's singing, he chats with her afterward in the dressing room and then takes her out. There is awesome chemistry between the two of them immediately, as they talk about music and life, and it's clear that Jack is smitten. He pulls Ally into his world and literally pulls her onstage with him at a huge concert, where they sing a duet of one of her original songs that she's always been too shy to sing in public. That appearance becomes a viral hit, and Ally is off and running, soon with her own manager and producer, while her limo driver father and his friends cheer her on. At first, its bliss for the two singers, making music together and falling in love, but Cooper's alcoholism begins to get in the way, and his condition steadily worsens as her star rises.

I never saw any of the earlier versions of A Star Is Born (crazy, right?), so I went into this knowing almost nothing about it, though I've heard that this version does not follow the exact same plot as earlier films. I expected to be entertained by the music, but there is so much emotional depth to the story. Cooper and Gaga are both extraordinary in their roles (definite Oscar contenders), inhabiting their characters so completely that I felt as if they were those people, which is quite a feat for two such well-known stars. The supporting cast is equally good, with Sam Elliot as Jack's manager, a surprising Andrew Dice Clay as Ally's dad, and Dave Chappelle as Jack's oldest friend, among others. And the music? Wow, just wow. Of course, Lady Gaga is an extraordinary singer but here she is stripped of her usual outrageous costumes and gimmicks and her raw talent is amazing. And who knew Bradley Cooper could sing? The original songs created for the movie (mostly written by Gaga) are not the kind of throw-aways you'd expect for "fake hits" in a movie; they are moving, powerful songs. The day after I saw the movie, I listened to some of the songs on Youtube and got chills down my spine all over again. The plot of the movie was darker than I expected, but it is so full of honest feeling that I was swept along. This is a must-see and definitely worth seeing on the big screen for the musical performances.

A Star Is Born is currently in theaters (but probably not for much longer) - find a recliner theater near you, like we did!     

Fandango- A Star is Born in Theaters 10/5!

Sunday, October 28, 2018

Weekly Inspiration: A Plan B Day

I haven't posted much here on the blog in the past week or so (and didn't write my Challenges of Treating OI post, as promised) because I have been badly crashed. This has become a very rare occurrence for me, so I am out of practice! After pushing myself to "get things done" for a few days, I realized I needed to listen to my own advice and rest. Also, since I rarely crash from over-exertion anymore (see Effective Treatments for ME/CFS for details), my best guess is that I must have been exposed to a virus, and my immune system is going a little bonkers. Again, those virally-triggered crashes have been rare the past few years, thanks to treatments, but that's the only explanation that makes sense. So, I am pounding the herbal antivirals and trying to listen to my body. I was feeling a little better this weekend so was becoming active again, but I woke up today with worsened aches & sore throat again. I figured I would have to ditch my plans to write a Weekly Inspiration post.

Then, I said to my husband, "I think I need to make a Plan B for today," and the lightbulb went on! This is our shorthand for "forget the plans - how can we make things easier?" Since I have written about this before, I will just repost it here today, thus illustrating the concept of Plan B! This article, A Plan B Day, was originally published on the ProHealth website on October 22, 2016. You can read it at the link or I will reprint it in its entirety below.

Now, back to resting and listening to my body!

A Plan B Day

Although some people with chronic illness are severely ill – even bedridden – every day, for many of us, chronic illness is an unpredictable rollercoaster of good days, bad days, and everything in between. In the first years of my ME/CFS, waking up feeling horrible on a day when I had plans or things to do caused me a great deal of stress. I often pushed myself to do those things that “had to be done” and ended up in even worse shape afterward. After many years of trial and error, I finally learned (I’m a slow learner) how to deal with those kinds of days. I call it a Plan B Day.

In my previous life, I was super-busy and always on the move. I liked to stick with my plans (some might even say I was a bit controlling!), and I would get upset if I couldn’t do what I wanted to do. I may have been tired or battling a cold or extra-busy, but I convinced myself these things had to get done today – no other options.

Then, in 2002, ME/CFS hit. In one day, I went from can-do to can’t-do (though it took much longer to recognize it). In those early years of illness, I had trouble letting go of my too-high expectations of myself. If I was planning to go to the grocery store one day and woke up feeling awful, I was still in the mindset that I had to go. You know what happens when you push past your limits with chronic illness – you end up flat on your back the next day (and possibly for many days afterward).

Now, not being able to do what I planned is a daily occurrence. My way of coping is to call it a Plan B Day and change my attitude entirely. Let’s say that grocery store trip is planned, and I wake up achy and worn out, with a sore throat. I still often start thinking, “But I have to…” but now I stop myself. Can I cobble together a meal with what’s in the house already? Can my husband stop after work to pick up what we need? I make myself relax, calm down, and think through the alternates.

Here’s how you can adopt a Plan B attitude on those days when you just can’t (or shouldn’t) do what you planned:

Take a Mental Inventory – Put the brakes on that “must-do” mentality and really assess how are you feeling. How bad are your symptoms? Sometimes I don’t notice how severe they are until I slow down and make myself take notice. Consider what your true capabilities are today and what you’ve learned in the past from pushing yourself when you feel this way. Don’t panic – just tell yourself it’s a Plan B Day.

Revisit Your To-Do List – Look at what you had planned to do today. What is really essential and what can wait?  Can you pull together a meal without going to the store? Do you have to go to the post office or bank today? Pare your list down to what absolutely cannot be put off (like picking up your kids from school, for instance!) – only the truly urgent things. Be honest & drop that “must get it done today” mentality.

Delegate & Revise – What is your Plan B? For those things that must be done today, who can you delegate to? Can you ask a friend or family member for help? Can it be postponed? Is there another way to do it without the exertion (maybe an e-mail or phone call instead of going out, for instance)? Look in the freezer to see what your meal options are without going to the store. Text your partner or a friend to see if they can help. It’s hard for many of us to ask for help, but the truth is that most of our friends and family members would love to help and just don’t know what we need.

Drop the Guilt and Rest – Now that you have your Plan B, do those few things you must (from the couch or bed!) to postpone and enlist help and then forget about it all. Let your Plan B do its job. Rest, take care of yourself, and give your body a chance to recover. Stress and worry will only make you sicker, so let it all go and focus on recuperating. Indulge in a good book, a funny movie, or binge-watching your favorite TV show to take your mind off the to-do’s and signal to your body that it is time to rest.

Once I adopted the Plan B attitude, I was surprised to find how few things are really, truly critical to get done today. It required a complete mindset change from my previous approach, but I find that using the phrase Plan B Day reminds me to slow down and look for alternatives instead of panicking or pushing myself. It’s a constant struggle to drop those expectations and take care of myself, but I easily see the results – feeling better the next day instead of worse or having the energy to spend time with my family at the end of the day instead of being totally depleted. And, if you wake up tomorrow still feeling awful, there’s always Plan C.

Thursday, October 25, 2018

TRIPLE Your Donation for ME/CFS Research Through 11/27

Exciting news! You have a chance to TRIPLE your donation to Open Medicine Foundation, now through Giving Tuesday on November 27, 2018. Two anonymous donors have stepped up to make this offer so that every donation that is made between now and then will be matched and tripled. That means if you donate $10, that automatically becomes $30, and $100 becomes $300. Every little bit always counts, but now you can make it count even more!

I just donated through Paypal, which took less than 2 minutes, to take advantage of the tripling, even though I am also signed up for $5 monthly donations all year round.

Open Medicine Foundation is doing some amazing work and has already moved research forward in ME/CFS, which was sorely needed. They are part of two large collaborative research centers, at Harvard and Stanford, run the End ME/CFS Project, and are funding many other exciting research projects.

Donate now before you forget!

And please help to spread the word!

Friday, October 19, 2018

Challenges in Diagnosing Orthostatic Intolerance

I have written often here about the significant role that Orthostatic Intolerance (OI) plays in ME/CFS and how treating OI has led to life-changing improvements for my sons and I, allowing us to live active lives again. OI is an integral part of ME/CFS - one study showed that 97% of the patients studied had it - and it is also very common in those with fibromyalgia, Lyme and other tick infections, and MCAS. Basically, any disease that affects your autonomic nervous system can cause OI. OI is an umbrella term encompassing several conditions where the body can not maintain a steady blood pressure (BP) or heart rate (HR) while upright (standing or even sitting). If you feel worse after standing and better when you are lying down, that is OI at work. Some people faint from OI but many with ME/CFS just feel sicker when upright.

The two most common types of OI in ME/CFS are Neurally Mediated Hypotension (NMH), where the BP drops when you are upright, and Postural Orthostatic Tachycardia Syndrome (POTS), where the HR goes up when upright. Rarer forms of OI - like where the BP goes up or the HR goes down or HR and/or BP jump all over the place - also exist. The good news is that there are many inexpensive treatments available for OI, and treating it usually brings dramatic improvement in all symptoms - it's what got both of my sons back to school full-time and allows me to now exercise again, walking for up to 90 minutes at a time, with no crash afterward!

This blog post describes OI - particularly NMH and POTS - in more detail, including how to diagnosis and treat it and our own experiences. I also wrote two articles for the ProHealth website, Part 1: Diagnosing OI and Part 2: Treating OI. These two articles will be particularly helpful in sharing with your doctor(s) because they are heavily footnoted with references listed at the bottom from scientific studies and papers, in case your doctor wants proof and/or to read more. Finally, Dr. Peter Rowe is the top expert worldwide in OI as a part of ME/CFS, and his summary brochure on OI is also helpful for reading yourself and sharing with your doctor(s). He includes a review of available treatments.

Even with all this information available, though, I have found in helping hundreds of other patients get treatment for OI that most people still run into some challenges in diagnosis and/or treatment. I'll cover diagnosis today and treatment next week.

Here is an overview of the most common challenges you might encounter in diagnosing OI and how to overcome them:

Challenges in Diagnosing OI:
  • Finding a doctor. Some patients have trouble finding a doctor who is knowledgeable about OI. You have two basic options: a cardiologist, who will most likely run a tilt table test, or your primary care doctor, who can do a simple standing test in the office (see below). The cardiologist is helpful for ruling out other cardiac conditions, but even this specialist may not be familiar with NMH and POTS and is almost certainly unfamiliar with these conditions as a part of ME/CFS (which is different than when they occur alone). Once we had a cardiologist rule out other problems for our son, we just went with standing tests in our family doctor's office.
  • Which test? You need a test that will show precisely what is happening to your HR and BP while you are standing. Cardiologists will tend to run all sorts of ruling-out tests, like EKGs and 24-hour monitors, but there are only two ways to diagnose OI: a tilt table test or a 10-minute standing test (instructions and forms at the link). The tilt table test is much, much more expensive, requires special equipment at a separate location, and can end up making the patient very ill and badly crashed, since it is intentionally trying to cause OI and lasts up to an hour or more. The standing test can be done in about 30 minutes in any doctor's office, with a nurse or doctor with a blood pressure cuff and watch (I wore my own heart rate monitor which made it even easier), so it only costs as much as a doctor's visit. It is still triggering OI so will still make the patient crash, but not as much usually since it doesn't last as long. Here's the surprising part: one study actually found the simpler standing test is MORE effective at diagnosing OI than the expensive tilt table test.
  • Stand VERY still. During the standing test, the patient leans against a wall for stability but then must stand absolutely still - not even wriggling fingers or toes. This is hard to do! Our bodies naturally want to compensate for the plunging BP and/or the rising HR, and they normally do this by moving around to keep blood circulating and not pooling in the feet and lower legs. Don't move, and let the nurse or doctor take the BP and HR measurements.
  • 10-minute standing test, not 1-minute. Those instructions linked above describe a test where the patient stands, leaning against a wall, for a full 10 minutes (or until the criteria is met, at which point the test can immediately end) after 10 minutes of lying down. I have lost count of the number of times I have heard that a doctor took a patient's BP while sitting, then immediately upon standing and announced they do not have OI. This is most likely due to confusion between Orthostatic Hypotension (OH), in which the BP falls immediately upon standing, and NMH, where the BP drop can take a while to fully develop. In fact, one doctor found that NMH can take up to 50 minutes to fully develop in ME/CFS patients, though most of us can't tolerate standing that long. It's the same with POTS. If your POTS is severe, it could show up immediately, but for most of us, up to10 minutes of standing is required for it to fully develop.
  • Watch for trends. Continuing along those same lines, be aware that your NMH or POTS or other form of OI might not fully develop, even during a full tilt table test. For that reason, the forms for the standing test have room to record symptoms. You and your doctor should look at the full picture after the test to determine if you have OI. So, if your HR went up 25 bpm in the 10-minute standing test, but the criteria says you need a 30 bpm increase to have POTS, you probably do have it, and it just didn't fully develop in that time. It's not normal for your HR to jump so high just from standing; a normal healthy person's body can hold their BP and HR pretty steady while standing still. Similarly, if you didn't meet the criteria for NMH or POTS but felt very sick during and after the test. So, you would still benefit from OI treatment.
  • Check BP as well as HR.  I honestly don't understand why, but I hear over and over again from patients whose doctors (often well-trained cardiologists) diagnose them with POTS but don't look at what their BP did while standing or on the tilt table - or measured their BP but then ignored it. I guess POTS is a more common condition, so they are more aware of it. But the other side of the OI equation is just as important, so ask your doctor what your BP did while upright, either during a 10-min standing test or a tilt table test.
  • One test might not be enough. I knew OI testing wasn't foolproof, but I was still stunned to read this study that showed that only 65% of POTS patients (already diagnosed with POTS) had their POTS show up with a single test. 65%! So, be aware that it might take multiple tests, and show your doctor this study if you think you need a second test. The study found the tests were more accurate in the morning, so that could help. If you have symptoms of OI (feel worse when standing, better when lying down) but your standing test doesn't show OI, come back another day (preferably in the morning) and try it again. This is another case where it's important to look for trends - if your BP or HR is trending up or down but doesn't quite meet the criteria - and to record symptoms during the test. When my son was tested, his feet turned purple and after about 7 minutes of standing, he felt horribly sick, was sweating (in a very cold office in January), and had pale, blotchy skin. Clearly his body could not tolerate standing!
All of this might seem like a lot of trouble to go through to get more diagnoses, but these are conditions that are measurable (a nice change of pace for us) and very, very treatable. Treating OI can lead to dramatic improvements in all symptoms and in quality of life. It's a big part of what got my sons and I back to living semi-normal, active lives again.

Up next week: Challenges in Treating OI, to help you get the same kinds of improvement we've gotten from OI treatment, which - like all aspects of ME/CFS - can require some trial and error to get right.

Have you encountered other challenges or problems in diagnosing OI that I haven't covered here? If so, please leave a comment below, and I will respond.

Tuesday, October 16, 2018

TV Tuesday: Jack Ryan

When we were away for the weekend last month without access to our usual cable shows, we watched Tom Clancy's Jack Ryan on Amazon Prime on my laptop - by the time we got back home a few days later, we were hooked on this new TV series that feels like a movie.

John Krasinski (who played Jim on The Office) is the latest in a long series of actors to play Jack Ryan, a recurring character who appeared in many of Tom Clancy's thriller novels. As in the novels, Ryan is a mild-mannered analyst in the CIA, toiling away in his cubicle and analyzing various events and activities overseas. In the first episode of this new series, Ryan picks up on a pattern of communications and money transfers among suspected terrorists in the Middle East. It takes him a while to convince the higher-ups that the threat is real, but eventually he gets through to his new boss, James Greer (played by Wendell Pierce, a favorite of ours from Treme and The Wire), who has made some mistakes in his career and is supposed to be laying low in his new position. The two are sent overseas, where Ryan suddenly finds himself in the middle of the violence of the terrorists instead of behind a desk. The complex plot and the tension build, as the CIA tries to close in on a new terrorist leader, chasing him and his men all over Europe and the Middle East.

If you liked any of the previous movies based on Clancy novels and featuring Jack Ryan, then you will love this new series because it really has the feel of a movie. It is action-packed and fast-paced, with lots of suspense and a twisty plot. There is also a romance angle, as Ryan begins dating someone new but must keep his real job - and his increasingly dangerous assignments - secret from her. We thought Krasinski did a great job in the role. Obviously, with a thriller plot about terrorists, there is plenty of violence here, some of it graphic, with ample gunfire and explosions, but the show is filled with excitement and tension that keeps you watching (and perhaps even binging) to see what happens next. We enjoyed it very much.

The first 8-episode season is available exclusively on Amazon Prime, and a second season is in the works for 2019 - we'll definitely be watching it!

Sunday, October 14, 2018

Weekly Inspiration: Get Out! Nature Improves Health

My husband and I enjoyed a few days last week camping in a beautiful state park with our pop-up camper. It's been a rough year for camping due to the awful weather and frequent storms (we cancelled 3 trips and had to cut this one short!), but just spending a few days outdoors was - as always - incredibly relaxing and rejuvenating. Just being outside, looking at the trees, and breathing in the fresh air provides instant peace. As a bonus, we visited two beautiful lakes (one just steps from our campsite). I find water outdoors especially tranquil and restorative. You can see some photos from our trip to these beautiful state parks in my Saturday Snapshot post at my book blog.

This earlier blog post, Camping and Enjoying the Outdoors with ME/CFS, explains how we manage our camping trips and time outdoors, with lots and lots of tips on how you can get out and enjoy nature, too. Even just looking out a window or lying outside in a reclining chair provides huge benefits. 

It's not just me. Many scientific studies have proven that nature and the outdoors are not only emotionally restorative but actually have positive effects on your physical health, too. My article, The Restorative Power of Nature, published on the ProHealth website last November, explains what science has discovered and how it can help us, with lots of tips on how YOU can reap those benefits, too, even if you are housebound or bedridden. The full text of the article is below (the link to the article on ProHealth is currently unavailable as they update their site):

The Restorative Power of Nature

Scientific studies have found that time spent in nature - even as little as 5 minutes - reduces stress, improves creativity, reduces self-criticism, and increases kindness (1,2). Spending time outdoors also has measurable physical effects, including reduced inflammation, improved mental clarity & memory, reduced stress response, and even improved immune function, as measured by Natural Killer cell function, with quantifiable improvements lasting 30 days or more after time spent in nature (3,4,5). These are all very real physical improvements that everyone with ME/CFS, fibromyalgia, or Lyme disease certainly needs.

Aside from scientific research, I know from my own experience that spending time outdoors feels rejuvenating, peaceful, and centering. Before ME/CFS, I loved outdoor activities, including long hikes, canoeing, camping, and even backpacking. Much of that is beyond my limits now, but my husband and I still enjoy camping - at our own slow pace - and various treatments for ME/CFS have allowed me to manage short hikes and kayaking. Spending time outdoors is still among my favorite things to do.

Even when I can’t be active, though, I have a goal to spend at least ten minutes each day outside. I lie in my reclining chair on our back deck, look up at the sky, listen to the birds, and instantly feel more relaxed. Even that small amount of time in nature, that close to my house, makes me feel better.

Here are some ideas so that you too can experience the restorative effects of nature, even if you are mostly homebound.

Just a Few Minutes Outdoors Helps
Some research studies show positive physical and mental changes in people after just 5 minutes (2) outdoors, so it doesn’t take much to make a difference! Try lying in a reclining chair or hammock in your yard/garden, patio, or deck. Just that simple change of scenery from your normal bed or couch to being outdoors can make you feel better and help you to tune into nature.

Leave the Devices Inside
Although I admit I do sometimes bring my laptop outside to write, you'll get the most benefit from leaving the phone, tablet, laptop, etc. inside. I usually don't even play music when I am out on our deck because it drowns out the sounds of nature. Bring a book out with you or just grab your pillow and blanket and relax!

Immerse Yourself in Nature
With the electronic devices left inside, you can now concentrate fully on nature. You may be surprised at how much you can experience of the natural world just from lying outside your home for a few minutes. Listen for the sound of birds and the wind blowing through the leaves of the trees. Look up at the sky - watching the clouds move across the sky, observing the different cloud types and shapes each day, or noting the unique color of the sky can bring an instant sense of peace. Notice how the sky after a summer storm looks entirely different from the sky on a clear fall day.

You can also look around you at the flowers and trees, enjoying the different colors and shapes and watching as they change with the seasons. Smell the air. Breathe deeply and notice the smell of dry fall leaves or how the air smells after a spring rain. Focus yourself entirely on the natural world around you, blocking out the incessant noise of our modern life - even just a few minutes of this can reduce stress, improve your sense of well-being, and bring positive physical changes.

If you can't manage even a few minutes lying outside, then open the window near your bed or couch (or look through the glass) and try the same exercises to focus each of your senses on the outdoor world. Studies have shown that even looking at pictures of nature has positive effects (5,6).

Managing a Longer Outdoor Experience
More extensive time spent outdoors brings even more and longer-lasting  improvements (7,8). For some who are severely ill and housebound, exploring beyond your backyard might be more than you can manage. However, many with these chronic illnesses can handle a longer or more immersive experience outdoors, especially after treating aspects of the disease and incorporating effective illness management to allow you to be more active without crashing.

If you can manage a short walk, try a local park or nature center for a change of scenery from the same old walk along your street or neighborhood. If a walk is beyond your limits, ask a friend or family member to push your wheelchair along a paved path or take you on a drive through the country. Roll down the window, breathe deeply of the fresh air, and enjoy the sights and sounds of nature. After treating orthostatic intolerance and wearing a heart rate monitor, I discovered I can handle a little bit of kayaking  - since it is done sitting down, my heart rate doesn’t jump up as high as when I am walking.

For camping, you can rent, borrow, or buy a camper as your home-away-from-home. Many state parks and other campgrounds offer rental cabins or trailers, and all public parks have handicapped campsites (and many have at least one wheelchair-accessible trail, too). You also provide your own food when camping, which helps when you have a restricted diet. You don't have to go far - look for local state or county parks with campgrounds. Spending time camping in our pop-up camper and being outdoors so much makes me feel instantly relaxed and content.

When you are camping, stick to your normal routines as much as possible - for me that means an early bedtime and an afternoon nap. We also bring portable lounge chairs so I can recline around the campfire or with my book. The nice thing is that being away from home (even if it's just a local park) means I am away from all the usual household responsibilities, so I can focus all of my energy on having fun and enjoying my surroundings. I love my small daily doses of nature on my back deck, but spending a few days outdoors, immersed in nature, is truly rejuvenating.

Each of us is different, even if we suffer from the same disease, and we all have different needs, but we can each find ways to incorporate nature and the outdoors into our lives. The payoff for a little time spent outside is huge, both in terms of emotional well-being and physical health. So, go ahead…put away the device you are reading this on and indulge in some time outdoors - your mind and body will thank you!

How do YOU enjoy the outdoors?

Sunday, October 07, 2018

Weekly Inspiration: Roll With the Punches

My latest article for ProHealth, Roll with the Punches, was published in late August (you can read the article at the link or below). Though I often draw from our own experiences in my chronic illness writing, this particular article came entirely from my own life.

It's been a very tough year for my family, dealing with one crisis after another, from medical emergencies to legal situations we've never dealt with before to unprecedented car repairs (including replacing brakes on four cars since spring!). All of that also led to financial crises and plenty of stress. One of the biggest challenges we faced this year was when our son was assaulted and seriously injured while on a study abroad program. It was during that particular crisis that I realize that our past 16 years of living with chronic illness had actually helped us prepare to deal with all sorts of other crises in our lives. So, this article is about what happens when the unexpected happens and how to roll with the punches and get through the crisis - all lessons learned from a life with chronic illness.

Has it been this way for you? Has chronic illness taught you some lessons on how to deal with the unexpected? Please share your own stories or tips in the comments below.

The full article is reprinted here, with permission from ProHealth:

Roll with the Punches

We’ve had a tough year with a lot of unexpected crises, creating emotional stress, financial problems, and the need for fast action. Most recently, when one son was assaulted in Europe and had to return early from a study abroad program, a family member commented on how well we coped with these kinds of emergencies, how we stayed calm and did what had to be done. It made me realize that 16 years of living with chronic illness has taught us how to go with the flow when things go wrong.

I have learned to expect the unexpected while living with ME/CFS myself, plus for many years having two sons with the same disease and one of them also battling tick infections. The only thing you can count on with these illnesses is their unpredictability. I’ve lost count of the number of times I’ve had to cancel time with friends at the last minute or couldn’t go to my book club or our whole family had to cancel a trip. It’s never fun, but you do get used to the rollercoaster life.

Our sons have grown up this way, learning to roll with the punches and change plans at a moment’s notice. They’ve learned to bear the disappointment of missing out on something but also to make the best of a bad situation. When my oldest son relapsed from the flu and we had to cancel our usual Thanksgiving trip to see family, we focused instead on the rare treat of being in our own home for a holiday.

When we recently got that unexpected phone call from our son in Italy, of course my husband and I were very upset. With so much experience of crises under our belts, however, we quickly moved on to what needed to be done. I contacted our son’s concussion specialist (he’d had one before), a caring doctor who replied immediately with advice for our son and assessed him long-distance with online concussion testing software. We spoke with our son every day to assess his progress (or lack thereof), and when it became clear that he couldn’t participate in any activities, we made arrangements to bring him home early.

Back home the next day, our son kept thanking us for acting quickly and bringing him home. We got him into the concussion specialist immediately and followed the instructions for “brain rest.” Even at that point, our son was remarkably positive about his experience. Yes, a horrible thing had happened to him, and he missed two-thirds of the program he’d been looking forward to…but he told us that his first week there had been amazing, that he’d seen and done so many wonderful things and learned a lot.

Now, a month later, he is almost fully recovered. He can think clearly, has returned to normal activities, and his headaches are almost gone. His professor is working with him on an individual project to get credit for the course. And we are hoping that the travel insurance (we never travel without it!) will come through with reimbursement for us soon.

In the midst of all of this, I realized that living with chronic illness has made us emotionally stronger and taught us to adapt when things go wrong. All of those unpredictable days, weeks, and months taught us how to cope with uncertainty and crisis. Here are some tips for when the unexpected happens to you:

Take time to grieve. It’s important to acknowledge and feel the raw emotions that come up when something horrible happens. You can’t move forward until you allow yourself to grieve. It’s OK to cry and let go and feel awful for a while. In fact, it’s healthy and necessary. 

Start moving forward. Once you experience that anger and hurt and sadness, it’s time to start thinking about what you can do to help. Even in our case, thousands of miles from our son, we could contact the doctor, talk to our son frequently (he was very upset at first), and begin thinking about what came next. Taking steps to ameliorate the situation will also help you to move forward emotionally, as long as you have first dealt with the grief.

Face one day at a time. Try to think about what you can do right now, today, to help with the crisis. It’s best not to worry too much about what comes next week or next year because that can lead to ever-worsening anxiety. Instead, focus on today – or even just this minute. Taking things one step at a time will help you to stay calm and able to help.

Seek support. A few days into our crisis, I realized I really needed someone to talk to (besides my very supportive husband). I turned to my online support group of parents whose kids are sick. True, this incident had nothing to do with ME/CFS or the other chronic conditions covered in our group, and it was the recovered son who was injured, but I knew they would “get it.” And they did. I vented out all of my concerns and anxiety to our private group, and – as always – they responded with compassion and understanding. It was just what I needed. Try to find just the right source of support for your situation, whether a friend, support group, or therapist.

Unexpected crises are not just a part of life with chronic illness; horrible things happen in every life at one time or another. When these things occur, though, our lives of chronic illness have an unexpected silver lining. We’ve been training for this ever since we got sick! You can use the skills and coping mechanisms you’ve learned from your chronic illness world to help you through whatever else comes up. As an added bonus, we can also help our loved ones to find their way through whatever life throws at them. Hang on – it’s going to be a bumpy ride!

Tuesday, October 02, 2018

TV Tuesday: Forever

After hearing about a new Amazon Prime show called Forever on Pop Culture Happy Hour, one of my favorite podcasts, I decided to give it a try. This show with a very unusual premise grew on me, and I ended up really enjoying it.

But here's the catch - I can't actually tell you what it's main premise is without spoiling all of the twists in the first two episodes, so I will describe as much as I can and leave the rest for you to discover for yourself.

Maya Rudolph and Fred Armisen play June and Oscar, a married couple with a long and happy history who have maybe fallen into a bit of a rut. Their life has become fairly routine, though it's clear that they still love each other, as they share inside jokes and their own brand of funny banter with each other. June in particular seems to be tiring of the same old, same old. They celebrate their anniversary every year by renting the same cabin at the same lake, so this year, June suggests they do something different. It takes some convincing - Oscar really enjoys their routines and traditions - but they end up heading to a ski resort for their anniversary. Something happens there that changes their lives forever.

I really can't say more than that because some of the fun of this show is in its early surprises that set up the rest of the episodes. Despite the twists, though, this show remains a thoughtful - and funny - study of love and marriage and long-term relationships. Maya Rudolph is really at the center of the show, playing the character who is feeling most dissatisfied in the relationship, and much of what happens comes from her restlessness. Although Fred Armisen is playing a mostly serious role here, he still comes off as slightly goofy and weird, perhaps because I saw him in a few episodes of Portlandia, which is a seriously weird show. Forever explores some serious issues, but it also has plenty of moments of humor. The first few episodes seemed a bit strange to me (especially after the unexpected twists), but the more I watched, the more I was hooked. I ended up really enjoying this unusual, thought-provoking, funny show.

Forever is an Amazon Prime original show, so it can be watched exclusively on Amazon Prime streaming.

Thursday, September 27, 2018

ME/CFS Community Symposium Saturday

This Saturday, September 29, 2018, the Open Medicine Foundation and Stanford University will hold their Second Annual ME/CFS Community Symposium, featuring top experts and doctors in the ME/CFS world, presenting updates on research, diagnosis, and treatment. Anyone, anywhere in the world, can join in via Livestream. Details and registration for Livestream are at the link.

The Working Group already began meeting on Wednesday - 50 top experts from all over the world discussing the latest research in ME/CFS! They will provide updates to patients and anyone else who wants to join on Saturday at the Community Symposium.

I will be away and offline this weekend - finally getting to go camping after 2 cancellations this summer! - so let me know what you hear! The entire thing will also be recorded and available on YouTube afterward (link also on the Symposium website above).

Monday, September 24, 2018

Movie Monday: Ocean's 8

During our mini vacation last weekend in the Berskshires, my husband and I watched a movie in our rental apartment one night: Ocean's 8, an all-female addition to the popular series that began with Ocean's 11 about groups of cons pulling off cool capers.

Sandra Bullock stars as Debbie Ocean, sister to renowned con man Danny Ocean, played by George Clooney in earlier Ocean movies. Debbie has just been paroled from prison, but instead of staying out of trouble, she immediately begins gathering old friends together for an impossible caper: stealing jewels from the Met Gala, the most exclusive celebrity event of the year. First, she recruits her old friend, Lou, played by Cate Blanchett. Their plan involves asking washed-up designer Rose, played by Helena Bonham Carter, to convince big-time celebrity Daphne Kluger, played by Anne Hathaway, to let her "dress her" for the ball, including wearing the most expensive necklace in Cartier's vault. They also recruit jeweler Amita, played by Mindy Kaling, computer whiz Nine Ball, played by Rihanna, talented pickpocket Constance, played by Awkwafina, and soccer mom/fencer of stolen goods Tammy, played by Sarah Paulson. Once they have their team assembled, the fun begins, with each member using her talents to bring their plan to fruition. As in all caper movies, the climax is the event itself, watching the team's plans become reality as they they create illusions, play their roles, and make the impossible happen.

Like the other Ocean's movies before it, this film is just pure fun. The twist of an all-female criminal crew adds to the entertainment, with - as always in this series - a slew of top-name actors playing the lead roles, and quite a few cameos and bit parts by equally big actors and other celebrities (some of them play themselves at the Met Gala). It's fast-paced, action-packed, and oh-so-clever, and we thoroughly enjoyed watching the plan unfold. And, as always, there are some twists in the plot that we never saw coming. All in all, it's straight-up entertainment, with plenty of suspense, laughs, and eye candy.

Ocean's 8 is currently out on DVD and streaming, available on Amazon Prime to rent starting at $4.99.


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.