Tuesday, November 29, 2016

TV Tuesday: Timeless

It's been a few weeks since I had time for a TV Tuesday post - Tuesday is the best day for both of my sons to get home from college, so we had some family dinners get in the way, plus last week's vacation. All good reasons to skip blogging, but now I have so many great new TV shows I want to share with you! For starters, my husband and I have been enjoying NBC's new time travel thriller, Timeless.

The first episode of Timeless sets up the plot and the pattern for the rest of the shows. A young history professor named Lucy, played by Abigail Spencer (a veteran of Suits, Mad Men, and True Detective) is picked up and whisked off to a large warehouse filled with strange equipment. There, the leaders of a scientific team explain to her that they've invented time travel. A nasty bad guy named Garcia Flynn, played by Goran Visnjic (one of our favorites from ER and Extant), has stolen the latest model of the time travel ship and headed off to May 6, 1937, which happens to be the date the Hindenburg exploded. Besides Lucy, they have also brought in a Delta Force solider named Wyatt, played by Matt Lanter, to provide protection. The third member of the time travel team is Rufus, played by Malcolm Barrett (who is hilarious in Better off Ted), a shy scientist who helped invent the time travel method and is needed for his technical expertise. They convince Lucy she must help them at once before history is irreparably changed.

So, the new ragtag team gets into an older model of the time travel ship and follows the first ship to May 6, 1937, in New Jersey. It soon becomes apparent that Flynn wants to change history and save the Hindenburg. Although that would save dozens of lives in that moment, Lucy immediately understands the devastating effects that any change could have on history and the decades that came after the Hindenburg. The team, dressed in period clothes, rushes around Lakehurst, NJ, to try to stop Flynn from stopping the disaster.

I won't tell you whether they succeed or not because that is part of the suspense of this unique show. On each episode, they follow Flynn off to some other date in the past. In every case, Flynn is trying to change history - sometimes dramatically. I will tell you they do not always succeed in stopping Flynn, and they do see some repercussions - both personal and global - from his messing with the historic timeline. Flynn's motives remain a mystery (we have watched seven episodes so far) that viewers get small hints of in each episode. The team travels to major historic events like Lincoln's assassination and the Alamo, but sometimes, it is less obvious why a particular time and place are pivotal points in history.

I am really enjoying this show. I am a huge fan of time travel stories, both on screen and in books, and this show is no exception. It has everything that makes me love time travel stories: fascinating history lessons, the clash of modern and historic, and - most of all - the thought-provoking ramifications of time travel and changing history. That theme is especially prominent here, as are the ethical dilemmas that result. For instance, Rufus, a black man, has a really difficult time with their mission to make sure that Lincoln's assassination goes on as it really happened in history. It is those kinds of thoughtful and mind-blowing concepts that I enjoy about this show.

Overall, I wouldn't say this show is excellent or perfect. It's no Orphan Black (but then, nothing is!). It is very good, though. I wasn't all that familiar with the three main actors who make up the time travel team, but the more I get to know their characters, the more I like them and the interactions between them. The show has a good sense of humor (very important to me!) which works especially well with some of the modern day vs. historic clashes. And, as I gushed in the previous paragraph, I LOVE the premise and plot. This show will not only appeal to sci fi fans but also to history buffs, and the historical details have been fascinating. Besides all that, it is a fast-paced and suspenseful thriller. I can't wait to watch episode 8 tonight, when the team travels back to the moon landing.

Timeless airs on NBC at 10 pm on Mondays. All episodes, starting with the first, are still available On Demand if you have cable or on NBC's website (the last 5 are available for free; you have to sign in with your cable or satellite provider to access the first 3 episodes). Timeless is also available on Amazon for $1.99 an episode or $19.99 for the entire first season (link below).

Help Move Research Forward on Giving Tuesday!

Photo: FreeDigitalPhotos.net

Today is Giving Tuesday, a day to focus on less material things after the crazy consumerism/shopping of the past few days!

For an extra gift to yourself, consider donating to an organization that supports ME/CFS patients and/or research. There has never been a better time - or more need for funding - for ME/CFS research. There have been so many exciting breakthroughs in the last few years that need further research to give us actual diagnostic tools, treatment options, and someday a cure!

Here is a list of ME/CFS organizations to consider donating to today - and all year-round - including 2 ways to TRIPLE your donation today only:

  • Solve ME/CFS Initiative - one of the leading ME/CFS research funding organizations in the world (they have funded a lot of important research over more than two decades) and creator of the ME/CFS BioBank and Patient Registry. Their message for this past week & today:
"Our triple-your-gift #GivingTuesday matching campaign has one day remaining. We must raise $750,000 in November and December to cover our budget for the year. For every tax-deductible dollar you give between now and November 29, our matching team of generous donors will give three.

Triple YOUR tax-deductible gift at DONATE.SolveCFS.org."  
Here's more info on the organization and the donation page. While you're at it, sign up to participate in the BioBank and Patient Registry to help move research forward in another way.
  • Open Medicine Foundation - and their End ME/CFS Project, including a study focused on the severely ill - a top-notch research organization with some of the top ME/CFS doctors in the world. More information on the organization and the donation page. OMF also has a Triple-Giving Challenge today!!
  • Simarron Research - an organization involved in a wide variety of ME/CFS research projects, including the ground-breaking immune study published last year from Columbia (the second half of that is still ongoing). More information on the organization and the donation page.
  • The Nevada Center for Biomedical Research - a new name for The Whittemore-Peterson Institute for Neuro-Immune Disease - though we haven't heard a lot from this organization since their XMRV theory was disproven (that's the way science works - new theories pop up and they are investigated and often discarded in order to move forward), they still have a number of important research projects in progress. More information on the organization and their donation page.
  • Health Rising - this is not actually a charity, but Cort Johnson, an ME/CFS patient himself, works tirelessly to seek out the latest research and information on ME/CFS and pass that along to other patients. I don't know how he manages all that he does, but I am grateful! His website (subtitled "Finding answers for ME/CFS and FM") is one of the first places I go for information, and he does accept donations (there's a Donate button on the homepage) to help him continue his important work.
  • Invest in ME (UK) - the major UK organization for ME/CFS, created by patients and parents of children with ME and focused on funding biomedical research, education, and lobbying. More information on the organization and the donation page.
  • The 25%ME Group - a UK organization that provides services to those who are most severely affected by ME. More information on the organization and the fundraising page, which includes a Donate button and information on other ways to help.
  • Tymes Trust - "the longest established national UK service for children and young people with ME and their families."  They work with doctors, teachers, and other specialists to support children with ME. More information on the organization and the donation page.
  • ME/CFS Australia (SA) - provides services and information, including support groups, an information line, and youth support, to ME/CFS patients in Australia. More information on the organization and the donation page.
  • Emerge Australia - this organization is mainly an advocacy group that "advocates for, educates about, and provides information on" ME/CFS in Australia. More information on the organization and the donation page
Wow, there are so many great organizations working tirelessly to help ME/CFS patients! And I'm sure I missed some - please ass your favorites in the comments section.

Take a moment to choose one of these worthy organizations to donate to - if each ME/CFS patient only gave $5 to an organization, we'd have millions more dollars for research and other services!

And if you don't get to it on Giving Tuesday (November 29), I'm sure any of these organizations would appreciate your donation any day of the year.

Remember, you can also donate painlessly while you shop! Most online stores will donate a portion of your purchase to the charity of your choice - sign up (free) for these three great donate-while-you-shop services. I know I helped ME/CFS research a LOT on Cyber Monday yesterday while shopping from my couch!

Thursday, November 17, 2016

Managing Family Relationships - Holidays and Beyond

I don't know how it happened so fast, but here we are at the brink of the holiday season again! Here in the U.S., we are celebrating Thanksgiving next week, followed quickly by the December holidays and New Year's. For many of us suffering from chronic - and invisible - illnesses, the holidays are a tough time of year, and the family gatherings are even tougher.

I wrote this article last year for the ProHealth website - Managing Family Relationships - Holidays and Beyond. It's all about navigating the tricky waters of family gatherings during this season (and all year round) when you are chronically ill. It is based on my own experiences and some hard-won things I've learned over the past 14+ years. I hope it helps ease some of your holiday stress so that you can not only endure family gatherings but maybe actually enjoy them.

Here is the article, in its entirety - enjoy your family next week & beyond!

Managing Family Relationships – Holidays and Beyond

Family relationships can be fraught with challenges when you live with a chronic illness, especially one that is often invisible. I speak from experience, as two of my family’s favorite coping mechanisms are denial and avoidance! Though some of my family members have been supportive of me since I first got sick, many others still never mention my illness and pretend everything is fine.

It took me many years to realize they were acting out of denial, that they really did love me, and in fact, their denial may even be based in how much they love me because it is hard to accept that a loved one will never recover. Also, some people just feel uncomfortable and don’t know what to say or how to act when faced with chronic illness in a loved one.

With the holiday season in full swing and lots of family gatherings, here are some of the things I have learned over the years to make spending time with family less stressful and more enjoyable:

Try to Explain – Once (maybe twice)
When I was first diagnosed, I sent out an e-mail to family and friends, explaining what ME/CFS was and how it affected me. After one horrible family vacation, I sent a long letter to one influential family member, explaining how their (non) actions made me feel. Things got better after that. Try explaining to your family how your illness affects you, though it’s best to do this before the big holiday dinner. Don’t get overly emotional and stay away from blaming. Just explain in simple terms what your symptoms are and the things they might see when you are together – perhaps you need to take naps, you can’t be too active or you get sicker, you have dietary restrictions (and why), or how just talking wears you out. Stay positive, matter-of-fact, and brief. Explain that you don’t want pity but just want them to understand your limits.

Accept That Some People Will Never Get It.
It took me many years of therapy and stress, but I have finally accepted that some family members will never get it – they just don’t have the emotional coping skills to deal with my illness in a healthy, honest way. I am OK with that. Certain people are never going to ask how I’ve been (for fear of what I might say!) or if I need to rest. Interestingly, though, since I gave up my expectations, some of them have surprised me in small ways. I learned that I can’t control their actions, but I can control my own response to them. Acceptance and peace feel a lot better to me than constant angst and bitterness.

I have also found that while the older generation may be a lost cause, I have great hope for the younger ones! Though their parents may not say anything about my illness, I always try to be upfront with the kids in my family. When they ask me questions – like why I need to nap or why I’m not eating dessert – I explain to them in a simple, straightforward way with a positive attitude. My niece was delighted to learn that wearing a heart rate monitor allowed me to have fun with her outside (within my limits) without worrying about getting sicker the next day!

Limit Time with Truly Toxic People
Though you can accept that some people won’t ever understand your illness, there may be people in your family who are truly harmful or abusive to you. In that case, it is best to limit your time with them and keep things on a light note when you are with them. Perhaps there is someone in your family who accuses you of “faking it” or someone who yells at you to just get up and do more. If you have already tried (once, maybe twice) to explain your illness to them and they persist, it may be time to just avoid them when you can. I am fortunate not to have anyone truly toxic in my family, so I decided that my family was important to me and that I could accept their avoidance behaviors because they aren’t harmful to me (once I changed my own responses to them).

Take Care of Yourself
When you are with family, take care of your own needs and don’t expect others to do so. I have found that low expectations are the key to good family relationships! Don’t expect much and you won’t be disappointed – and you might just be pleasantly surprised. Enlist someone close to you who understands your illness – perhaps your spouse or child – if you do need help during a family gathering. Mind your dietary restrictions without making a big deal of them, eating what you can and leaving what you can’t. I might ask the cook if the gravy contains milk, but otherwise I take care of myself. After our Thanksgiving meal, I quietly went upstairs to take my nap – my 16-year old cousin had kindly offered me her bed when I first came in that day (see what I mean about the younger generation?).

Relax and Enjoy Your Family!
Once you have let go of unrealistic expectations and accepted your family members as they are, it’s time to just relax and enjoy your family. I may not be able to help in the kitchen, but I can sit in the living room with my feet up and watch football with my family or sit and talk to my cousins…and go to a quiet room to rest when I need to recharge. Try bringing photo albums or home movies to look at during a family gathering so there is some quiet time built into the day for everyone.

Find a role for yourself. In the past decade, I have become the de facto Family Photographer. Photos and memories have always been important to me, so it’s a natural fit. I may not be able to participate in the post-dinner football game outside, but I can sit on the sidelines and take pictures. At the end of every year, I put my photos on a DVD (with my laptop while sitting in the recliner!) and give it to family members as a gift. When my niece and nephew were younger, I used to love to cuddle up with them and read to them – I even brought my own stack of holiday-specific picture books when we got together. They loved it, and so did I. Focus on the things you can do, rather than on your limits.

Enjoy your family gatherings this holiday season…and all year round!

(published on ProHeath, December 20, 2015)

Monday, November 14, 2016

Movie Monday: Thin Ice

My husband went to the library last week and came home with a DVD for us to watch: Thin Ice, a comedy/crime caper from 2011. It gave us a lot of surprises, suspense, and plenty of laughs.

Greg Kinnear stars as Micky, an insurance salesman in Wisconsin who pretty much lies about everything. As the movie opens, Mickey is at a regional sales conference in a low-budget hotel. He gives one of the presentations, bragging about his prowess as a salesman. Micky meets Bob, played by David Harbour, an eager guy just starting out in insurance sales. When Micky realizes his nemesis has offered Bob a job, Micky steals him away, promising him more money.

It turns out Micky works out of a tiny office with a single assistant and has no money. His ex-wife is furious at him for spending their son's college fund. He is broke and desperately needs some cash. Bob eagerly tells him he has a potential client, and Micky insists on coming along when Bob visits him. They go to the home of an elderly man out in the country named Gorvy, played wonderfully by Alan Arkin. He's a grumpy old man, but Bob and Micky convince him he needs an insurance policy. As is typical, Micky goes back by himself to close the deal without Bob and notices another way he can possibly scam more money from Gorvy, without him even realizing it.

From there, the plot gets twisty and complicated - a classic caper movie! Only this is the kind of caper where everything goes wrong and trouble waits around every corner, where the perpetrators are fumbling and inept. Micky finds himself inextricably linked with a real criminal, played by Billy Crudup. Chaos and hilarity ensue, from a priceless violin to an unintended murder and beyond. Kinnear plays the increasingly desperate Micky with his usual skill. There is plenty of suspense here and lots of laughs. It's a fun, escapist movie that we enjoyed.

Thin Ice was released in 2011 and is available on DVD: used ones are available on Amazon for as little as a penny, via Netflix DVD, or at the library where we found it!

Sunday, November 13, 2016

Weekly Inspiration: To Persevere

I have had a really rough week, both physically and emotionally. I wrote a post about adding a new diagnosis, Erythromelalgia, to my stack of them earlier this week, I was thrilled to have some information and treatment possibilities to look into. But, by the end of the week, the constant pain and discomfort really wore me down. Wearing shoes - or even socks - is impossible, which makes going out very difficult. I wore flip-flips out twice this week when it was in the 40's and 50's out! Even with these precautions, my right foot has been throbbing in pain by the end of the day. I have a lot of respect for those of you who live with constant pain always - it is really wiping me out emotionally as well as physically.

So, as a result, I have been not only exhausted but a bit depressed the past few days. I was able to sleep in a bit this morning - first time since the time change! - and I think that helped a little. For this week's Weekly Inspiration post, I was actually looking for something to inspire myself.

I looked through my Quote Journals this morning (and the stack of books with Post-Its in them waiting to be entered into my Quote Journals!), searching for something to inspire me.

I finally realized that this very simple quote from Snow Falling on Cedars by David Guterson (a novel about the effects of Japanese-American internment during WWII - review at the link) is really what I need today:
"To persevere was always a reflection of the state of one's inner life, one's philosophy, and one's perspective. It was best to accept old age, death, injustice, hardship - all of these were part of living."
          - Snow Falling on Cedars by David Guterson

I recognized that this quote from the novel fit in perfectly with the short quote that I whispered to myself in bed last night before I fell asleep, one of my all-time favorites and a great comforter when I've had a bad day (or week):
"Courage doesn't always roar.
Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.""
          - Mary Ann Radmacher

Sometimes, that's all we can do, right? Persevere and try again tomorrow.

I want to emphasize that by persevere, I don't mean doing nothing. That first quote says to accept hardships as a part of life, but for me, that doesn't mean you do nothing. Yes, there are times when our health and our physical condition are out of our control, and it is healthiest to accept that and try to live peacefully with it. But I don't think you should ever give up hope of a better tomorrow.

I am, at heart, an optimistic person, and I am also someone who does better - and feels better - with lots of information. Knowledge is power. So, although I must accept this new diagnosis and accept my limitations and pain with it for now, I have no intention of giving up. Because persevere also means to keep going, keep learning, keep fighting. All of my research and reading and meeting other people with EM last week has already paid off. I have the names of several doctors within driving distance that treat EM, and I plan to call the closest one first thing Monday morning. I read all of the treatments studies on EM (not much!) and have a list of treatments I want to try that I will discuss with the doctor.

As with ME/CFS and Lyme, I plan to do everything in my power to find ways to ease the EM and find treatments that will help me. I accept that this new condition is a part of my life now, but I will continue to persevere and try again tomorrow to help myself and find some relief.

I'm feeling a little better now - I hope you are, too.

What inspires you when things get bad? What are the comforting words or books or other things you turn to when you feel despair?

Thursday, November 10, 2016

Another Diagnosis: Erythromelalgia

Like many of us, I already have an alphabet soup of diagnoses that seems to grow every year: ME/CFS kicked everything off almost 15 years ago. It causes Orthostatic Intolerance (OI), which for me includes both POTS and NMH. Plus I recently realized I still have Lyme disease which seems to flare up every few years.

Classic EM on toes & feet (mine is much milder)
Now, I can add one more to the list: Erythromelalgia or EM (yay, another acronym!) This started 3 years ago but was just diagnosed at the end of last winter. Because mine goes dormant in the warmer months, I have just begun to read and research EM, to learn more about it and how to treat it because it gets very painful at this time of year. EM is likely caused by/directly related to ME/CFS in my case, so it is possible that some of you may have it as well and quite likely if you do that it hasn't yet been diagnosed. It is considered a rare condition.

According to the Erythromelalgia Association:
"Erythromelalgia is a rare and frequently devastating disorder that typically affects the skin of the feet or hands, or both, and causes visible redness, intense heat and burning pain."
My EM began abruptly almost 3 years ago. It was the first week of December, the weather had turned cold, and my family made our annual trip to a local Christmas tree farm to cut down our tree. It was, as always, a pleasant time with my family, except that by the time I got home, my toes were burning with pain. I was desperate to tear off my warm socks and boots and was almost in tears. From that day on, the burning pain and redness in my toes continued until spring. The podiatrist guessed maybe it was a fungal infection, but the antifungal cream he prescribed did nothing. My primary care doctor had no idea what was wrong (is this sounding familiar?).

On my next visit to the dermatologist, I showed him my toes and described the pain. He said it sounded like chilblains. I told him someone else had suggested that, and I had looked it up, but my problem seemed to be the opposite. Apparently, with chilblains, cold temperatures make the condition flare and it feels better if you keep your feet warm. I had discovered, by trial and error, that heat made my feet worse. I explained to him that the only relief I got was from soaking my feet in cold water, which led him to conclude this was definitely not chilblains. He was also stumped, but - to his great credit - he didn't give up on me. He went off and did some research and called me back to his office.

He said he thought he'd figured out what I had: Erythromelalgia. He'd found information online on the Mayo Clinic's website, and he let me watch a video (at the link) about it on his tablet. He was right - it sounded exactly like what I had! Unfortunately, since it was a relatively rare condition, there didn't seem to be a lot of information on treatments. He prescribed a cream for me for the pain & burning feeling and advised me to use cold water soaks sparingly (and cool, not ice cold water) so as not to damage the skin. I limped (sometimes literally) through the rest of the cool season and breathed a sigh of relief when it disappeared again in the warmer months.

Two weeks ago, it began to flare up again - right on time as the outdoor temperature cooled. By the way, my seasonal fluctuations seem to be unusual; for most people, summer is worse, and the warm outdoor temperatures cause bad flare-ups of their EM. My theory, from what I've read and the photos I've seen, is that mine is milder, and it flares up when I start to wear shoes and socks in the cooler weather and switch from flip-flops to slippers indoors. This time when it started, I looked up erythromelalgia online and began to educate myself about the condition and its possible treatments.

For starters, my EM is almost certainly related to ME/CFS. ME/CFS causes autonomic nervous system dysfunction, which causes OI and can also lead to EM. Interestingly, I already take several medications for ME/CFS that are sometimes used for EM (beta blockers for OI/POTS and tricyclic antidepressants - low dose at bedtime - for correcting sleep dysfunction). Perhaps that is another reason why my EM seems milder than most and goes dormant for part of the year.

I was happy to find that there have been some studies on various treatments (though not many), and I eagerly read all that I could find on the subject and made a list of what might work for me. They divide EM into two categories: primary, which has a genetic marker, and secondary, which is caused by other conditions. I think with ME/CFS and its autonomic dysfunction, I fall squarely in the secondary camp (I also checked my genetic results and I don't have the marker). So, that somewhat limits my treatment options, but there are several things I'd like to try. My dermatologist doesn't feel qualified to treat EM - he'd never even heard of it before he dug it up for me! - but I have learned there are two potential doctors sort of nearby - one at Temple and one at Johns Hopkins - who might be able to treat it. So, that's my next step.

Besides digging up all the information I could find, I also joined two Facebook groups on erythromelalgia. I know from experience that nothing beats talking to other patients in the same situation about what has worked for them (that's where I found out about the two doctors in the area).

So, briefly, erythromelalgia symptoms often include:
  • Burning pain and redness on extremities - often toes and feet, sometimes fingers and hands, and occasionally up the legs or arms, too. For some people, it also affects the face and ears.
  • Some swelling and inflammation of affected extremities.
  • Cold makes symptoms better; heat makes them worse - this is key and differentiates EM from many other possible diagnoses.
I miss my whimsical sock collection!
First-line of defense is simply keeping the affected extremities cool. For me, this means going barefoot or in flip-flops all the time in the house, keeping the house temperature cool (at least until my husband gets home in the evening!), sleeping with my bare feet outside of the covers, and occasionally - not too long or too often - using a brief cool water soak when the pain gets unbearable. It's not easy having cold feet all winter long, but it helps a lot! I am already missing my slippers and all my cute, colorful socks that I used to love wearing. Going out is tricky for me at the moment. Wearing loose slip-on canvas sneakers without socks seems to work best, if I really can't bear being out in flip-flops. Right now, my pinky toe is swollen, so even those hurt a lot.

If you think you, too, might have erythromelalgia (I'm getting better at saying & typing that!), here are some resources - information and groups - to help:

So, I'm curious, does anyone else with ME/CFS or Lyme have EM or think they may have it? So far, in the two groups I joined, there seem to be quite a few EM patients who also have ME/CFS, POTS, or Lyme disease.

UPDATE February 2020:

Back in 2017, I successfully put my EM into remission using heat desensitization, a simple process of resetting your nervous system by gradually getting your affected parts (feet, hands, etc.) used to tolerating heat again. You can do this with hot water soaks, starting at about body temperature (98-99 F) and slowly and gradually working the temperature up (but no higher than 120 F or you can scald your skin). I explain more about my own process in Heat Desensitization - EM in Remission! and that post includes a link to the EM group where I learned about heat desensitization and many, many other people describe their own experiences. My own EM would flare up every winter; I have now been through my 5th winter with no EM, wearing warm socks, shoes and boots, and even sleeping with my feet under the covers!

Monday, November 07, 2016

Movie Monday: Eye in the Sky

Last week, my husband and I got another movie at Redbox (we've had lots of coupon codes lately!), a 2015 military thriller called Eye in the Sky that is all about the challenges of modern warfare.

Wow. Just wow. This is an emotionally powerful movie with far-reaching, complicated moral implications that you won't soon forget. This is about war in its new, futuristic form, with armed drones, where the people controlling them are often many thousands of miles away. The military personnel are nowhere near the site they are targeting nor near each other. In this case, the target is the top leaders of a major terrorist group, whom intelligence has revealed are meeting in a home in Kenya today.

Helen Mirren stars as a military commander in the British armed services, Colonel Katherine Powell. The late Alan Rickman, in his last role, is Powell's superior, Lieutenant General Frank Benson, who is sitting in a conference room in London, along with other high-level government officials, watching the operation unfold on video. Across the ocean, in Las Vegas, American drone pilot Steve Watts, played by Aaron Paul, and his partner are awaiting instructions. Another local Kenyan military team is near the site where the terrorists are, hiding undercover in a beat-up old van and handling close-up surveillance.

The operation begins as a capture mission but changes to a kill mission when certain facts are uncovered by surveillance about the terrorists in the house. The military personnel - on three different continents - confer with each other through audio and video feeds, and, as this is a British-led mission, every change to the operation must go up the chain of command in the UK before it is approved. It's a fascinating process to watch.

Unfortunately, there is the potential for civilian casualties. That seems like such a euphemistic way to put it after watching the movie! There is a happy Kenyan family, the Mo'Alim family, who lives around the corner from the house where the terrorists are meeting. They are poor but making ends meet: Mom and Ed work hard and love their beautiful little daughter, Fatima. Fatima is an ebullient child who loves to dance and play with the hula hoop her father made her. Every day, she puts on a head scarf and takes a basket filled with loaves of bread that her mother baked and sets them on a table near the street to sell them. You guessed it - her table of bread is right in front of the terrorists' house.

We watch as the group of military and government officials tries to decide what to do. It might seem obvious to wait until the little girl has left the scene, but it's not that simple. Many more hundreds of people will die - today - if these terrorists are allowed to leave the house. It is an impossible decision that requires a fast resolution.

Eye in the Sky is a suspenseful movie that illuminates this new world of remote warfare. You would think that unmanned drones that can kill terrorists from the sky would make things simple and clean, but this film shows that it is anything but. It brings these impossible moral and ethical questions to the forefront and educates viewers about the real-life tolls of such remote actions, where those carrying out the action are in no danger themselves. In fact, the movie opens with each of the main characters waking up in their comfortable homes to a perfectly normal day. It's a twisty, tense story that had me yelling at the TV, though not sure what the right decision was. This is one of the most powerful movies I've seen in a long time...and one of the most important, too. Everyone living in our modern world should watch this. It will stick with you for a long time.

Eye in the Sky is currently available on DVD, at Redbox, and free for streaming on Amazon Prime (link below).

Sunday, November 06, 2016

Weekly Inspiration: Life in the Digital Now

It's been a while since my last Weekly Inspiration post (more like a Quarterly Inspiration post lately!), and I think this particular topic helps to explain why.

I watched this brief TED talk by Abha Daewesar, called Life in the "Digital Now," in which she examines the differences between real life and real time versus what we experience spending a lot of time online, in the "digital now." Check it out:

I found this talk particularly inspiring because it is something that I struggle with - a lot. More and more, the digital online world pulls us away from real life and real interactions. I find myself wishing I had more time for friends, for reading, for enjoying the outdoors, while my laptop holds me captive for hours. There is always something I feel like I must do (and I am often behind on) - e-mails, Facebook posts, Twitter...and writing blog posts! There are links saved in my e-mail and browser bookmarks of articles I keep meaning to read, videos I mean to watch, people I want to respond to. There is never enough time in this digital world to fit in all that that it has to offer!

As for real life, I know I am guilty of typing away while my husband is talking, my kids are visiting, even while I watch a TV show together with my family. I do have goals and objectives that directly address my desire for more real life and a better balance between the digital world and the real one. And in some of these areas, I've been successful: I close my laptop and set it aside by 7:30 pm each evening so that my husband and I can watch our favorite TV shows together, I try to get outside at least 10 minutes every day, I plan to see friends once a week (a stretch goal for anyone with ME/CFS!), and my daily nap is sacred. But I still feel this constant struggle between the digital world and the real world.

This balance is even more delicate for those with ME/CFS who are housebound or bedridden. Although I am not in either category, I do need a large amount quiet, down time in my own house which often translates to being pulled into that digital world. For us, much of our interactions with people, our relationships are carried out online. We read blogs, Tweets, and Facebook pages; interact with others like us in groups or forums; and correspond through e-mail and social media. Interacting with people in real life and real time is not always an option for us. But we can still do some things to ensure that our digital lives are not becoming our real lives exclusively.

I love what the speaker here says about how humans are designed to work with nature's time: the sun and the moon, the changing of the seasons. I love the outdoors and experiencing nature, and I learned a long time ago that I need to immerse myself in nature for at least a short time each day in order to feel connected to the real world. Sometimes I am able to take a short walk in the woods, but often my outdoor time is spent lying on our back deck or driving with the top down on my old VW convertible. If you are bedridden, engaging with nature might mean merely opening a window - setting aside your electronic devices and listening to birds, watching the leaves in the trees, or enjoying flowers in a windowbox. However it is spent, I find that even a small amount of outdoor time rejuvenates me and reconnects me with the real world.

The other thing we can do - that I need to work on myself! - is fully engaging in the real world when we are able to. This means stopping what I am doing online and giving my husband my full attention when he comes into the room and starts talking to me. It means eating meals together and talking and not in front of the TV (we are very good on that point, actually). It means setting aside technology when you see a friend or family member, especially if those are rare occasions. And sometimes, it merely means setting the devices aside to completely lose yourself in a good book or listen to an audiobook or focusing on the outdoor world and nature.

Technology is a lifeline for many of us, but we have to be careful not to let it take over our lives. Digital time is different than real time, and humans were made for real time. This balancing act is a constant struggle for me, but I am going to continue to try to make time for real life and not let my online life take over. I guess that means I should finish this post and enjoy breakfast with my family!

Do you struggle with balancing real life and digital life? What strategies work for you?

Friday, November 04, 2016

Support ME/CFS Research While Online Shopping

Every year, I intend to write a post about this great way to donate to ME/CFS research wile shopping...but when I do find time to write it, it is usually too late for most people's holiday shopping! So, I'm trying to be more proactive this year:

There are 3 easy ways to donate to your favorite charity while you shop this holiday season (and year-round). It costs you nothing at all - online stores have agreed to donate a portion of the money you spend on their site!

The one I use most often is iGive. You just start on their site (or use their app for mobile devices), choose your store or search for the item you want to buy, and then click through to the online store. iGive shows what percentage each store has agreed to donate, and they show a running total on your iGive page of how much you have donated and how much has been donated to your chosen charity in total. Right now, iGive has a member special going on - you sign up using my link, and they will donate a bonus $5 to my charity, Solve ME/CFS Initiative (then you can choose your own charity for your own shopping). This is an excellent organization that conducts dozens of hard-science ME/CFS studies every year, in fields like genetics, immunology, infectious disease, and more, with the goal of helping to develop diagnostic tools and treatments for ME/CFS...and hopefully, one day a cure! So far, according to iGive, my own shopping has donated $228 to Solve ME/CFS, with over $6000 total donated! And I didn't have to do a thing (except sign up).

GoodShop works similarly. You can sign up at the link, choose your charity, and then go through the site to your stores when you are shopping online. I use iGive more often, but sometimes a particular store will only be signed up with one or the other donation service. Both show available coupons for your store and also offer search engines.

Finally, Amazon has its own donation service called AmazonSmile. You sign up and choose your charity. Then, anytime you start from AmazonSmile, a portion of the money you spend on Amazon goes to your charity. Since we buy all of our supplements through Amazon, this can add up fast!

These are my three go-to sites for easy donation while I shop. Do you know of others?

Sign up today, and while you do your holiday shopping this season, you can be contributing to ME/CFS research! It's like giving ourselves an extra holiday gift.

Tuesday, November 01, 2016

TV Tuesday: Designated Survivor

When the political debates superseded some of our favorite TV shows recently, leaving us all caught up with nothing to watch, my husband and I decided to try a new show, Designated Survivor, starring Kiefer Sutherland. We binge -watched the first three episodes, and it quickly became a new favorite. We have seen five episodes now, and we are hooked. Apparently, we aren't the only ones - several recent articles indicate it is one of the most popular new shows on TV.

Kiefer Sutherland stars as the secretary of Housing & Urban Development (HUD), a mild-mannered and apolitical guy who quietly does his job. In the first episode, the U.S. Capitol is bombed during the President's State of the Union Address, killing everyone in the line of succession (well down the list) plus almost all of Congress. Apparently, the U.S. has a real-life policy of selecting a Designated Survivor - a member of the Cabinet - to be absent from an event in which all others in the line of succession are together, just in case of such a catastrophe. So, the TV show is based on this possible real-life scenario, in which Sutherland's character, Tom Kirkman, was watching the State of the Union address from a secure location away from the Capitol Building (the HUD Secretary has been the designated survivor before in real life).

So, when this bombing occurs and almost the entire leadership of our country is killed, Kirkman, dressed in jeans and a sweatshirt, is suddenly sworn in as President. As in real life since 2005, Congress also has a Designated Survivor, so there is just one member of Congress left, Senator Kimble Hookstraten, played by Virginia Madsen. Kirkman must jump into the role of President immediately, with no warning or preparation, and start making huge decisions with little advice or direction. He seems to be a really good guy - honest and ethical - but he has no experience with this kind of leadership, especially in his new role as Commander in Chief.

The Secret Service quickly picks up Kirkman's family - his two kids and his wife, Alex, played by Natascha McElhone - and whisks them to their new home at the White House. Meanwhile, the show also follows the FBI investigation of the bombing, with Maggie Q in the role of Hannah, one of the investigators, who suspects the case may not be as straightforward as it first appears. Kal Penn also stars in the show (and is excellent) as Seth Wright, the president's speechwriter.

We are loving this show so far. It is fast-paced and full of action and suspense, with the threat of additional attacks imminent and chaos reigning across the country, but it is also thoughtful and intricate. Considering these terrifying what-if questions adds to the drama and suspense. Kirkman - as is true for any President - often finds himself in difficult, sometimes impossible situations, expected to make a quick decision when he has no experience to guide him. Of course, Sutherland is wonderful in this role. The acting is great, the writing is top-notch, and the premise is original and captivating. We can't wait for the next episode!

Designated Survivor is currently airing on ABC Wednesdays at 10 pm eastern time. You can catch up on episodes On Demand (as we have done), free on the ABC website, or on Amazon for $1.99 an episode (link below).

Article: What Do You Do When a Loved One Becomes Chronically Ill?

I have a new article published on the website thirdAGE (the site's tagline is Healthy Living for Women and Their Families) called:

What Do You Do When a Loved One Becomes Chronically Ill?

This is one to share with your family and friends!!

In addition to basing it on my own experiences (15 years of chronic illness, with a wide range of responses from family & friends!), I also polled the parents in our Facebook group for parents of sick kids - and they had LOTS of input! (NOTE: If you request to join the Parents' group, please check your Facebook messages - that's how we confirm and check on potential members).

The article is organized by Do's and Don'ts, and the editors let me write a longer piece than they originally asked for so that I was able to include a lot of information.

I hope you find this helpful for your own friends and family members.

What is the most important thing you wish YOUR loved ones knew about how to help you?