Tuesday, October 17, 2017

TRIPLE Your ME/CFS Research Donation!

Starting today and running through Tuesday, November 28, the Open Medicine Foundation - one of the premier organizations conducting ground-breaking ME/CFS research - is taking the annual #GivingTuesday tradition (the day after Cyber Monday) and opening it up to a month and a half of chances to TRIPLE your donation.

The Cosgrove family, who have a family member with ME/CFS, have generously offered to match and triple every dollar donated to OMF during this month and a half, up to $100,000! Just think of what ME/CFS researchers can do with those extra resources!

For background, OMF is one of the organizations that sponsored the recent Community Symposium on the Molecular Basis of ME/CFS  and has a large team of experts in a variety of fields conducting research into all aspects of ME/CFS.

Here are more details on this wonderful Triple Giving Tuesday opportunity, including ways to help spread the word, and you can donate on this page. They've already raised $4500, and the campaign just started today! With this triple matching gift, even just a few dollars can help to make a real difference.

You'll find more information on OMF on this page, and here are more details on their research under the umbrella of the End ME/CFS Project.

So, stop by the donation page today to triple your gift! I just did.

Thursday, October 12, 2017

Throwback Thursday: Orthostatic Intolerance (OI)

Copyright: fberti / 123RF Stock Photo
The past few days (like most days!), I have been fielding a lot of questions on Twitter and Facebook about Orthostatic Intolerance (OI) - about how it is an integral part of ME/CFS (and often fibro & Lyme, too), how it is easily diagnosed, and how treatment can often dramatically improve all symptoms, activity level, and quality of life! I've also been working on a 2-part series of articles for ProHealth about OI. So, it seemed like a good topic for my second Throwback Thursday post (my first was on physical therapy for those with ME/CFS).

What Is Orthostatic Intolerance (OI)?
First, a quick explanation, in case you don't know about OI. The endocrine and autonomic nervous system dysfunction in ME/CFS make OI a natural outcome of our disease. Just about everyone with ME/CFS has at least one type of OI (and many of us have more) - some studies show more than 97%! OI also seems to be very prevalent in patients with fibromyalgia and Lyme and other tick infections.

OI basically means an inability to hold our blood pressure (BP) and heart rate (HR) steady when we are upright (sitting up but especially standing). The most common forms of OI seen in ME/CFS are POTS (Postural Orthostatic Tachycardia Syndrome) - where the HR goes up when you are upright - and NMH (Neurally Mediated Hypotension) - where the BP drops when you are upright. There are also rarer forms of OI, like where the BP rises when upright or where BP and HR jump all over the place. If you can't hold your BP and/or HR steady while standing still for 10 minutes or more, that is OI.

This blog post explains all about OI - what it is, why we have it, how to diagnose it, how to treat it, and our own experiences in treating OI.

This excellent article on OI by Dr. Peter Rowe is more comprehensive, covering all types of treatments for OI. It is written in plain language and can be understood by patients but is also perfect for printing and sharing with your doctor.

If you prefer to watch a video rather than read, here is an excellent webinar by Dr. Rowe on OI.

Diagnosing OI
The gold standard for diagnosing ME/CFS is the Tilt Table Test (TTT), which some doctors will insist on; however, you can more easily (and far more cheaply!) diagnose OI with a simple 10-minute standing test done in any doctor's office.

This blog post explains how to do this kind of in-office standing test and our own experiences doing them. There is a link at the end to instructions and forms to print for your doctor, or you can print more detailed instructions & forms at this link (yes, the test was originally designed by NASA!).

Whether you get a TTT or do the in-office standing test, you and your doctor should be aware that OI testing may not pick up your OI in a single test (as I explained about my own test) - this study documented that OI testing unreliability and also has some tips about what time of day might produce more accurate results.

Treating OI
So, now you know you have OI (told you so!). The good news is that there are many different treatments available, and treating OI often brings dramatic improvement in all symptoms and allows you to be more active without crashing afterward. The most complete and comprehensive review of treatments (both medications and lifestyle changes) is in Dr. Rowe's OI article. Again, share this with your doctor - since Dr. Rowe is at Johns Hopkins, he has instant credibility and most doctors are glad to learn about OI (if yours isn't interested in learning, then you need a new doctor).

One thing you can do to help manage your life is to measure your HR and stay within your limits to prevent post-exertional crashes. This is mind-blowing stuff - once you see for yourself how your HR skyrockets when you stand up, you will wonder how you managed to do anything since getting ME/CFS. Without any treatment for OI, the heart rate monitor (HRM) can only help you determine what is within your limits and what is beyond them, but with treatment, you will see from your HRM that you can do more without going past your limits...which is life-changing! Then, you can use your HRM when you are active to stay within your limits.

One way to bring HR down to normal levels and also stabilize BP is with low-dose beta blockers. This blog post provides detailed information on how to use beta blockers to treat OI (hint: lower doses than normal and LOTS of trial and error) and our own experiences. They have been life-changing for both my son and I, allowing us to be MUCH more active without crashing. Crashes from over-exertion have now become rare for me.

My sons both had excellent results with Florinef, which often works well for kids and teens (and is worth a try for adults). That is covered in more detail in my OI overview post.

For those who are severely ill and/or have significant pain issues, a specialized form of Manual Physical Therapy for ME/CFS and EDS is one option that has helped a lot of patients. Don't panic - this isn't normal PT where you use weights and other equipment to exercise. It starts out with the patient completely passive and incorporates an approach called nerve gliding, which can help immensely with pain and decreased mobility issues.

Other treatment approaches are covered in detail in Dr. Rowe's article.

So, YES! You almost certainly do have some form of OI, and treating it can bring vast improvements to your symptoms and your life.

Have you been diagnosed with OI yet? What treatments have helped you?

Tuesday, October 10, 2017

TV Tuesday: Ten Days in the Valley

One of the new fall TV shows I was most excited about is Ten Days in the Valley, a "limited series" with 10 episodes on ABC about a young girl who is abducted from her home and her overworked, stressed-out mother. We have watched the first two episodes so far, and it is dark and suspenseful with plenty of twists.

Kyra Sedgewick (known for her starring role on The Closer and many other movie roles) stars as Jane Sadler, a TV producer. At the start of the first episode, we see that she has a difficult relationship with her ex-husband, Pete, played by Kick Gurry, who begs for more time with their daughter. Jane seems to have a very close relationship with her adorable daughter, Lake, played by Abigail Pniowski, and the two of them cuddle together as Lake falls asleep. Jane, though, soon breaks her promise to stay in bed when she gets an urgent call that the next episode of her new cop show needs a complete rewrite by morning. In what looks like a familiar routine for Jane, she gets out of bed and tiptoes out to the shed behind the house that serves as her office. She brings a baby monitor and keeps the back door cracked open.

Things go from bad to worse that night, though, and after an intense night of writing, Jane heads back to the house to find that all of the doors - including the one she left open - are closed and locked. She breaks a window, frantic now, and gets into the house, only to find that Lake is gone without a trace. She immediately suspects that Pete came back during the night to take Lake because she'd said no to his request to keep her for a few more days. The police get involved, with the investigation led by Detective John Bird, played by Adewale Akinnuoye-Agbaje (aka Mr. Echo from Lost, a favorite of ours). At first, the police follow Jane's instincts, but soon other clues emerge that muddy the waters and point to a more complicated case. To make matters worse, it is clear to the police that Jane is lying or withholding information (she's doing both).

Only two episodes have aired so far, but we are loving this show. It's fast-paced suspense with layers of complexity that are just beginning to get peeled away, bit by bit. Sedgewick is her usual amazing self, here playing a woman who was clearly on the edge of falling apart even before her daughter went missing; her performance is intense and compelling. The other actors are excellent as well, including Malcolm-Jamal Warner as Jane's boss, Emily Kinney (we liked her most recently in the short-lived Conviction) as Jane's assistant, and Erika Christensen of Parenthood fame as Jane's sister. It's a taut thriller that keeps you guessing, with surprises in every episode. We can't wait to see more!

Ten Days in the Valley is currently airing on ABC and is available On Demand, on the ABC website, or for $1.99 an episode (or $16.99 for the season) on Amazon. There will be 10 episodes (each represents a different day).

Monday, October 09, 2017

Movie Monday: Everything, Everything

Since I review YA books, I'd heard about the novel Everything, Everything by Nicola Yoon. I haven't had a chance to read the book yet, so I was glad when the movie came out. Reading the summary of the story, I was wondering whether it might be a 2017 version of The Boy in the Plastic Bubble (anyone else remember that 1976 TV movie starring John Travolta?) Well, it kind of is...but with more depth and some plot twists I wasn't expecting. I enjoyed this teen romantic drama.

Eighteen-year old Maddy, played by Amandia Stenberg, has a rare immune disease such that her body can't protect her against germs; even a common cold could be deadly. So, Maddy has lived her entire live in her specially designed house, with only her mother and her nurse, Carla, for company. If you have to be stuck in a house your whole life, it's a pretty cool place, with natural elements, modern furniture, and a huge glass wall with a view of the outside world. Maddy is used to this secluded life, so she keeps busy taking architectural classes online, making models (her favorite is a diner where she imagines one day sitting in a booth), studying, playing games with her mom and Carla, and enjoying time online.

One day, a new family moves in next door, and Maddy has an excellent view from her window of the moving truck, the family, and especially, the gorgeous long-haired teen boy named Olly, played by Nick Robinson. He sees her, too, and is fascinated and attracted to the beautiful girl behind the glass. They begin communicating via handwritten notes held up to windows and progress to texts, IM, e-mails, and eventually talking on the phone. As expected, they fall in love. Olly yearns to show Maddy the world, and Maddy is suddenly no longer content to never leave home, but they both want to protect Maddy's health. I expected a rather predictable story at that point ala The Boy in the Plastic Bubble, but what happens next surprised me.

I watched this movie on my own, while my husband was traveling. He's not a huge fan of teen romances (though he did enjoy Before I Fall with me). It's a mostly light drama, with a bit of suspense toward the end and a hefty dose of romance. Visually, it's wonderful to watch. I found myself wanting to visit Maddy's home (minus the not being able to leave part), and the movie does some fun things with their through-the-glass romance, for instance Maddy imagining herself and Olly in person in the diner she designed while they're texting or talking on the phone. The teen actors did a good job and were fun to watch, and both Anika Noni Rose and Ana de la Reguera were good as Maddy's mom and nurse, respectively.

Everything, Everything is currently out on DVD and available for streaming on Amazon, starting at $3.99. Or you can read the book!

Disclosure: I received this DVD free in return for an honest review. My review is my own opinion and is not influenced by my relationship with the film's PR team.

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.


Friday, October 06, 2017

UNREST Documentary Coming to Theaters & iTunes

Jen Brea in the documentary UNREST
The highly anticipated ME/CFS documentary UNREST, created by Jen Brea, is now out in theaters and coming soon to more theaters as well as iTunes. Pre-ordering it on iTunes will help it to get even more attention and get featured in the iTunes Store.

Jen Brea is an ME/CFS patient who has worked tirelessly for years on this high-quality documentary about our plight. Her efforts have been supported by many ME/CFS patients (including me!), and her film has been highly anticipated.

This powerful film has already won a bunch of awards, including one at the Sundance Film Festival for documentaries. As it is being shown in cities around the world, it is getting even more attention and acclaim. It even has a grade of 100 on Rotten Tomatoes, based on 12 different reviews, which is very impressive!

There are at least three ways to see it:
  • Attend a screening
  • Host a screening in your town or city
  • Pre-order it on iTunes (available October 10)
You can get information on all of those at the link above. I just clicked the button to pre-order on iTunes! The price is $14.99.

Here's the trailer:

The other thing you can do to help build awareness of ME/CFS is to tell people about the documentary! When you click this link on the UNREST website, there is a pop-up page to help you spread the news. Jen's film is extraordinary and is already helping to bring much-needed attention to our long-ignored disease. Help to spread the word!

Thursday, October 05, 2017

Throwback Thursday: Physical Therapy and ME/CFS

Copyright: 123RF Stock Photo
This is the start of a new weekly feature on my blog: Throwback Thursday. I realized I have 11 YEARS of old blog posts here, and most new readers are completely unaware of the resources available. So, I thought I'd do a weekly Throwback Thursday post that focuses on some of my older posts, with a different topic spotlighted each week.

And today's topic is...Physical Therapy. And that is because I was just discharged from PT today for an arm/shoulder injury - hurray! Woohoo! I'm not back to 100% yet, but I am about 70% of the way there and can hopefully continue to improve on my own, with what I have learned. So, PT has been helpful to me (and again last year when I injured my shoulder in a different way), BUT successful PT is a tricky business for anyone with ME/CFS.

I want to be clear that I am NOT recommending regular PT as a treatment for ME/CFS. That is a common practice that is often harmful to ME/CFS patients rather than helpful. The Graded Exercise Therapy (GET) approach to "treating" ME/CFS has been recently debunked (I will write a post on that soon), though thousands of doctors and clinics around the world continue to recommend it. Instead, here are 3 tips for patients with ME/CFS for PT that will help and not harm them.

PT for ME/CFS Patients for an Injury
Though PT is not recommended for ME/CFS patients, sometimes - as in my case this summer - it is necessary in order to help heal an injury or after surgery for an injury. When that happens, it is absolutely critical on Day 1 to educate your physical therapist(s) about the impact of PT for an ME/CFS patient - particularly the exercise intolerance and Orthostatic Intolerance (OI).

In this post, Physical Therapy for ME/CFS Patients, I outline how to do that and provide a short and simple 2-page document for you to print and give to your physical therapist(s). I created the document when I started my own PT last year, and it has been well-received by every PT I have worked with since. They have all appreciated the information and taken it to heart, using extreme caution and modifying my PT so that it doesn't make me worse. For instance, many exercises that are normally done standing up, I do lying on my back. Bonus: I have helped to educate medical professionals about ME/CFS and its severity.

Specialized Manual PT for Treating ME/CFS
There is one kind of PT that can be used to help improve ME/CFS, but it's not the kind that involves making you jump on the stationary bike and exercise. It's a specialized form of manual PT that Dr. Peter Rowe of Johns Hopkins - a renowned pediatric ME/CFS expert - developed along with a team of physical therapists. Manual PT means the physical therapist does the work instead of the patient, so it starts out with the patient entirely passive and lying down. This particular type of manual PT utilizes a technique called nerve gliding, which helps ease the movement of tendons and ligaments that are not moving smoothly, thus easing pain and improving mobility. The blog post at the link provides more information plus links to how to set it up for yourself or your child. I know several teens with ME/CFS and/or EDS who have benefited greatly from this in both reducing pain and improving their overall condition, in combination with treating OI (see below).

First, Treat Orthostatic Intolerance
Whether going to PT for an injury or for that specialized type of manual PT for ME/CFS, you won't get very far or be able to do much without first treating Orthostatic Intolerance (OI).  OI  is an integral part of ME/CFS - over 97% of ME/CFS patients have some form of OI (and most of those with fibro & many with Lyme, too). So, if you or your child has ME/CFS, then he or she does have OI, too. OI is an umbrella term encompassing several conditions where the body can not maintain a steady blood pressure and/or heart rate when upright (standing or even sitting up). The two most common types of OI in ME/CFS are NMH, where the BP drops when you are upright, and POTS, where the HR goes up when you are upright. Rarer forms of OI - like where the BP rises when upright - also exist. The good news is that OI is fairly easy to treat & often brings dramatic improvement to all symptoms. That link to my OI post explains all about OI, how to diagnose and treat it, and includes our own very positive experiences in improving all symptoms by treating OI.

If your HR is constantly going over your limit (indicating a "crash" is imminent) as soon as you stand or sit up, then you can't make much progress with PT. Treat OI first and then you can tolerate some exercise without crashing afterward, so you can tolerate modified PT...plus all of your symptoms will improve, you can be more active in your everyday life, and your quality of life will improve, too!

Hope that is helpful to you. What have your experiences with PT been? Do you think you or your child could benefit from the specialized for of Manual PT for ME/CFS? Let me know in the comments.

Tuesday, October 03, 2017

TV Tuesday: The Killing

For the past few weeks, during the end-of-summer TV lull, my husband and I have gotten hooked on a dark, suspenseful mystery series called The Killing on Netflix. All the new fall shows are starting now, but we are still loving this great suspense show!

Mareille Enos (more recently of The Catch) plays homicide detective Sarah Linden. As the first episode opens, Sarah is on her last day on the job in Seattle, ready to retire and start a new life with her boyfriend in sunny Sonoma, CA. She and her son, Jack (played by Liam James), have tickets for a late-night flight and have already packed up their home.

Then, a new case hits: a 16-year old girl, Rosie Lawsen, is missing and soon found dead. The case really gets under Sarah's skin as she and her replacement, Stephen Holden (played by Joel Kinnaman), criss-cross the city trying to find clues to Rosie's murder. Sarah misses her late-night deadline - a few times - and finally pledges to stay an extra week to try to wrap up the case. But this case is not easily solved.

Meanwhile, Rosie's family is devastated. Her father, Stan (played by Brent Sexton), owns his own moving company, but years ago he worked for the Russian mob as a "fixer." Her mother, Mitch (played by Michelle Forbes), is wrecked by depression at the loss of her daughter and can't even take care of their remaining two younger sons. Her sister, fun aunt Terry, steps in to help.

Meanwhile, there is a close mayoral race going on in Seattle, pitting the sitting mayor, Lesley Adams (played by Tom Butler) against the handsome, charismatic man-of-the-people councilman Darren Richmond, played by Billy Campbell. Politics gets pulled into the mix when a car registered to the councilman's campaign is found to be connected to the case.

The action goes back and forth between the detectives trying to solve the case, the grieving family who wants justice, and the ever-more nasty political campaign, as the Richmond side tries to distance itself from the horrific crime, and the Mayor tries to imply Richmond was involved. The tone of the show is dark and brooding, much like Sarah herself, set against the backdrop of a mostly dark and always raining Seattle (you won't want to visit the city after seeing all this dark rain!). There is plenty of suspense as the experienced detective and the newbie work (sometimes at odds with each other) to try to find a lead, with all kinds of unexpected twists and turns in the plot.

The entire cast is excellent in this show, but Mareille Enos is really outstanding. If you've only seen her before as the glamorous, wealthy Alice on The Catch, you will barely recognize her here. This is a grittier, more real feeling Enos who fully inhabits the character of Sarah, with her almost-obsession with being a good detective and solving this case in constant battle with her desire to be a good mom (and some secrets in her background). Her relationship with Holden is also an interesting one to watch develop, as she completely distrusts him at first, and he has his own secrets. His performance is also very good - both characters feel real and relatable.

We are in the middle of season 2 (of 4 seasons total), and Linden and Holden are still working on the same case, with all elements of the show digging deeper and deeper. There are surprises and red herrings in every show, plus plenty of character development on all sides. Like I said, we are completely hooked. If you liked The Fall, this show has a similar dark, gritty feel to it (it seems to be as dark and rainy in Ireland as it is in Seattle). It's perfect for this spooky season! (though we enjoyed it during the hot summer, too).

The Killing is a Netflix Original program, so it is available for streaming only on Netflix, with all four seasons there. Or you can watch it on DVD (link below).

Sunday, October 01, 2017

Weekly Inspiration: The Importance of Family

This weekend, my son and I drove 14 hours round-trip to my hometown of Rochester, NY, to attend my uncle's funeral. He died Monday night, and I spent all week making a memorial DVD with photos, music, and videos for my aunt and cousins (and to show at the funeral). As I'm sure you can imagine, that all adds up to being pretty exhausted today...and behind in everything else here at home.

My dad and I at my wedding in 1989 - I miss him every day!
But those aren't my primary feelings today. I am mostly feeling grateful for being surrounded by my extended family yesterday, for the comfort of grieving together and remembering happy times. Some of my cousins are still in Rochester, but many of us are scattered now - in PA, DE, CT, and NC. It's rare for us all to be together (8 of the 9 of my first cousins were there yesterday). Sadly, we all have something else in common now - none of us have fathers anymore (my dad died two years ago). This was incredibly sad (and difficult for me, with my father's death so recent and this uncle being his closest brother) but also comforting, as we could all understand what my cousins were going through yesterday.
My cousins and I 1978 (I'm 2nd from the left)
Besides the close family (who we do see once or twice a year for holidays), I also enjoyed seeing more distant family members that I hadn't seen in many years - my own father had requested a small, private funeral for immediate family only. And I also saw some old family friends (since my dad and my uncle were close in age, they shared some friends) whom I hadn't seen since I was a little girl. It was so wonderful to talk to them about my dad and reconnect.

My cousins and I yesterday (7 of the 9 of us)

Bottom line is that family is SO important. It's easy to become isolated when we live with chronic illness, not by choice but by necessity. You may not be able to attend family functions any more or go to large gatherings like weddings and funerals. Or, you may have purposely distanced yourself from family members who don't understand your illness.

So, I thought I would once again share some of my own experiences. This blog post, Helping Family to Understand ME/CFS, describes my own very painful experiences with my family in the early years of my illness and how I finally improved things. It's still not perfect - there are people in my family who will NEVER understand - but I am glad to have repaired things enough that I am able to enjoy my family.

This article I wrote for ProHealth, Managing Family Relationships - Holidays and Beyond, is particularly important at this time of year, with holiday gatherings approaching. It provides some tips on how to enjoy the time you spend with your extended family, whether they understand your illness or not.

And if you are homebound and not able to attend family gatherings, then this article might help. It's another one I wrote just recently for ProHealth: Staying Connected with Friends While Ill. While the article focuses on friendships, the tips apply just as well to family relationships, too, with ideas for staying in touch even if you can't leave home.

I hope those blog posts and articles help you to get closer to your family and/or enjoy your time with them more. Today, I am very grateful for my family.

Tuesday, September 26, 2017

TV Tuesday: Salvation

I'm a little late with this review of Salvation, a CBS summer show that started in July, but since it is still available in a couple of places, I thought I'd go ahead and review it now. My husband and I have enjoyed this fast-paced show that is a mix of sci fi thriller and political conspiracy and just watched the season one finale this week.

MIT grad student Liam Cole, played by the adorably scruffy Charlie Rowe, one day discovers a large asteroid that is on a course to collide with Earth in 186 days. He rushes to the home of his professor, played by Dennis Boutsikaris, but finds a huge mess in his office, his glasses crushed on the floor, and his professor nowhere to be found. Scared now, Liam rushes across campus, trying to stay away from whatever "bad guys" found his professor. That same day, Liam meets Jillian, a beautiful young writer played by Jacqueline Byers, and it's love at first sight for both of them.

Desperate to tell someone about the asteroid who can help, Liam crashes into a TED-type talk given by Darius Tanz, played by Santiago Cabrera, a tech billionaire who runs a powerful company. It takes some convincing, but Darius soon believes Liam and understands the seriousness of the problem. The two head to Tanz Industries headquarters in D.C. and contact Grace Barrows, played by Jennifer Finnigan, who is the Press Secretary for the Assistant Secretary of Defense, Harris, played by Ian Anthony Dale.

Two different but related threads run through the show. There's the science side of things, where Darius and Liam race against time to try to figure out how to either destroy the asteroid or move it off course. And there's the political side of things, where Grace and Harris (sometimes working at odds with each other; other times working together) try to convince those in power to provide the necessary funding and support. Through it all, only a very small group of people even know about the asteroid - they are afraid that if it becomes public knowledge, panic and chaos will ensue.

There's a lot going on in this show to keep it moving at a fast pace. In addition to the main storylines, Darius is secretly working on an "ark," a rocket that would hold 160 people and could make it to Mars; there's an existing romance between Grace and Harris; a new romance between Liam and Jillian (though he can't tell her about the asteroid); political machinations; and a small issue of ever-worsening conflict and perhaps approaching war between Russia and the US. It's all very exciting, with plenty of suspense, and the acting is good, with excellent chemistry between the main characters. The science might be a bit iffy in places, but that's typical for this sort of sci fi thriller - you just suspend disbelief and go along for the ride. And what a ride it is! We watched this show the old-fashioned way, once a week as each new episode was released (well, not entirely old-fashioned - we watched it On Demand), and we were always eager to see the next one. It ended with a huge cliff-hanger, so I hope there will be a season 2!

Season 1 (13 episodes) just finished airing on CBS. The last 5 episodes are available for free On Demand or on the CBS website. To see the first 8 episodes on CBS, you have to subscribe to their service. The entire first season is available FREE to Amazon Prime members or you can purchase episodes for $1.99 each (link below) on Amazon.

Sunday, September 24, 2017

Weekly Inspiration: Staying Connected with Friends While Ill

Hello! I haven't been posting much here on weekends lately because I've just been too busy (and sometimes away). My extra-busy summer flowed right into an extra-busy September! Part of the problem is that I've been in physical therapy for an arm/shoulder injury, and that is taking up a LOT of my very limited energy & time each week (note that if you need PT for an injury, print these guidelines for PT for patients with ME/CFS - these have really helped my PTs to understand my limits!).

Eating crabs with two of my closest friends
So, today's inspiration is all about connecting with friends, which can be a serious challenge when you spend so much time alone at home or expend all of your energy with your family. But friendships are SO important - friends not only provide much-needed support, they can also bring a lot of joy into your life.

I wrote this article for the ProHealth website: Staying Connected with Friends While Ill. You can read the article at the link, and I will post the full text here on the blog in a month.

The article includes:
  • What to say or talk about with old friends whom you now feel you have little in common with due to your illness
  • How to stay connected to old friends
  • How to know when it's time to let go of friendships that are no longer working
  • How to make new friends, both online and in real life, whether you can get out a bit or are stuck at home
  • If you have sick kids, teens, or young adults, you can apply these same tips to help them
After 15 years of living with ME/CFS and Lyme, I've had a lot of experiences with friendships - both good and bad. Through it all, though, I've managed to stay in touch with old friends, let go of friends who couldn't deal with my illness, and make new friends who have enriched my life. And I am fortunate to have a few really amazing friends who have stuck with me through bad times and good and bring so much joy to my life.

I'd love to hear about YOUR experiences with friendship while ill. What have been your biggest challenges? Did you lose a friend because of your illness? How have you made new friends or stayed connected to old ones? Leave a comment below!

Tuesday, September 19, 2017

Fall TV We Are Looking Forward To

Yes, yes, it's back-to-school time, kids off to college, weather turning cooler (or supposed to anyway)...but fall also means the new TV season is here! Granted, it's not like in the old days, when all new shows started in fall. Now we have streaming services launching new shows constantly and even the networks introducing new shows every season, but fall is still the biggest season for the biggest shows and the biggest launches. Here's what we are looking forward to, both old and new:

Returning Favorites
We can't wait for some of our old favorite shows to return! Here's a list of the ones we are most looking forward to, along with links to my past reviews and start dates for this fall:
  • Scorpion, season 4 begins 9/25 - a fun show about a group of genius misfits helping the government - not always believable but fun, suspenseful, a good sense of humor, and even a bit of geek romance.  We've been watching it for 3 years, but I guess I haven't reviewed it yet!
  • Blacklist, season 5 starts 9/27 - we still enjoy this fast-paced thriller starring James Spader as the mysterious Red. Can't believe I haven't reviewed that one yet, either!
  • Designated Survivor, season 2 starts 9/27 - and we can't wait! We loved the first season of this political drama crossed with an action thriller starring Keifer Sutherland as a former HUD Secretary who becomes President when the rest of the country's leadership is killed in a bombing. 
  • Grey's Anatomy, season 14 (!!) starts 9/28 - yes, we still watch this long-running medical drama!
  • How To Get Away With Murder, season 4 starts 9/28 - this complicated legal thriller
    co-created by the great Shonda Rhimes always starts with some startling event and then flashes back to fill in the blanks.
  • Madam Secretary, season 4 starts 10/8 - we are huge fans of this political drama starring Tea Leoni as Secretary of State.
  • Good Behavior, season 2 starts 10/15 - we loved this new show last winter, based on a series of novels by Blake Crouch (of Wayward Pines fame) about Letty, a con woman, trying to hold onto her beloved son, who hooks up with a killer-for-hire boyfriend. Here's its IMDB page.
  • Travelers, season 2 starts 10/16 -  we watched season 1 of this time-travel show starring Eric McCormack on Netflix last year with our son and loved it!
  • Blindspot, season 3 starts 10/27 - this intriguing thriller features a
    woman found in Times Square covered in tattoos with no memory.
  • Stranger Things, season 2 starts 10/27 - we binged this 80's sci fi Netflix show with our son last year and all loved it! Can't wait to see what happens next.
Yes, yes, I am well aware that it will be a challenge to juggle all those shows! Hopefully, some of the earlier ones will be winding down for a mid-season break by the time the later ones start. And let's not forget about new shows! Here are a few coming this fall that look like they might be worth checking out...

New Shows To Try

I went through a LOT of trailers and narrowed it down to these that look like we might enjoy them:

The Good Doctor (ABC) starting 9/25 - about a young genius surgical resident who is autistic (and whose hiring is controversial)

Ten Days in the Valley (ABC) starting 10/1 - a 10-episode thriller starring Kyra Sedgwick as a TV producer whose daughter goes missing

The Crossing (ABC) starting in October - I think I am most excited about this new sci fi thriller, about a group of refugees who appear in an American town seeking asylum - from 250 years in the future!

Deception (ABC) starting in October - a new suspense thriller about an illusionist/magician working with the FBI

Wow, so many good shows to look forward to this fall!! It all starts next week...get ready for some binge-watching!

What old favorites and new TV shows are you most looking forward to this fall?

Monday, September 18, 2017

Movie Monday: Gold

A few weeks ago, my husband and I found another great recent release free on streaming and watched Gold, starring Matthew McConaughey, a drama that begins in the 80's about a gold prospector who hits it big.

McConaughey plays Kenny Wells, a prospector working for his father's mining company who thinks big. He is always looking for the next substantial find, especially after his father's death, as the business begins to die out. He's got a huge personality and is great at motivating the people he works with, getting them excited about the latest lead, as they work to convince investors to give them money. Desperate, with the company on the verge of bankruptcy, Kenny spends his last dollars and takes off to meet renowned geologist Michael Acosta (played by Edgar Ramirez), who was responsible for a big copper find. Kenny convinces Michael to partner with him to find gold in Indonesia, and Kenny's excitement and ambitions are contagious. Back home, Kenny wrangles what remains of his company to line up investors.

The two men take off into uncharted territory deep in the Indonesian jungle, where the locals have been known to pan for gold in the river for generations. In his dress pants, shirt, and shoes, Kenny stays by Michael's side through the mud and jungle as they bring a group of locals along to help search for that elusive gold that could turn into a successful mine. Failure after failure ensues, and Kenny becomes incapacitated with malaria. Will they succeed? Are Kenny's dreams and Michael's intuitions based on reality or fantasy?

Loosely based on a true story, Gold is a drama full of suspense and emotional depth. McConaughey is amazing as the enthusiastic, driven Kenny, fully inhabiting the character through his ups and downs. You will completely believe in this pot-bellied, receding hairline version of McConaughey and will feel for poor Kenny and root for him to succeed. There are plenty of unexpected twists and turns in the plot, to keep the pace and the suspense moving. My husband and I both thoroughly enjoyed this action-packed drama.

Gold is currently available on DVD and is free on Netflix streaming. It is also available for streaming on Amazon Prime, starting at $4.99 (or the DVD is available for $14.96).


Monday, September 11, 2017

Movie Monday: Captain Fantastic

We've seen a bunch of good movies this past month, but my favorite has been Captain Fantastic, the story of a very unusual family facing some difficult challenges. It is both warm and funny.

Viggo Mortensen plays Ben, a father who is bringing up his six children in a very unorthodox way in the wilds of the Pacific Northwest. He and his wife, Leslie, decided to bring up their family outside the influence of corporations and government, in their own little quirky homestead out in the woods. The kids know how to hunt, gather, and grow their own food and are in excellent physical shape, but their parents have also paid attention to their intellectual development, creating their own unique academic approach that includes a wide range of books with no conventional age limits on them. In the opening scenes, we see that the children (Bodevan, Kielyr, Vespyr, Rellian, Zaja, and Nai - thank you, IMDB!) seem healthy, well-adjusted, and very happy, despite their strange lifestyle and isolation.

Then tragedy hits, and Ben must take his family out into the wider world for the first time in many years. They pile into their converted bus - just as unique and homemade as everything else they own - and head off on their epic road trip. Besides the expected clashes between their insulated upbringing and the commercial, material world we live in today, they are also encountering their extended family for the first time in years. Their first stop to visit Ben's sister (played by Kathryn Hahn, of Transparent), her husband (played by Steve Zahn of Treme), and their two sons doesn't go well, with Ben's children's swearing and high intellect, paired with Ben's openness with them, going head to head against his sister's traditional parenting approach. The dinner table scene is both hilarious and painful.

Things get worse when they visit Leslie's parents, with Grandpa played by Frank Langella, who is especially unhappy with the children's non-traditional upbringing. Conflict ensues, with it looking for a while like there won't be a happy ending for this wonderful but unusual family.

I absolutely loved this movie, and my husband enjoyed it, too. I expected humor from the fish-out-of-water scenarios, and I wasn't disappointed. But this movie also delivers with plenty of emotional depth, moving from heartwarming to heartbreaking and back again. In addition, Ben and Leslie's unusual approach to parenting and their clashes with the outside world bring up plenty of thought-provoking issues, around education, materialism, and family. Some of the very honest discussions among the characters in the movie further delve into issues like mental health. literature, and politics.

The acting here is superb - Viggo Mortensen was nominated for loads of awards for his role but the kids are the real stars here, and the young actors do a tremendous job playing these warm and quirky kids. This movie will have you laughing one moment and tearing up the next. It was very satisfying and had unusual depth among the typical blockbusters of today. Apparently, I'm not the only one to think so, as it has a long list of award nominations, including a Best Actor Oscar nomination for Viggo Mortensen, and many film festival wins. I'm ready to watch the whole thing again right now!

Captain Fantastic is out on DVD and is currently streaming free on Amazon Prime (link below).

Warning: the movie trailer below gives away more of the plot than I did in my review (but it is from the films' creators, so it's what they intended). If you prefer to watch movies cold, then you might want to skip it...but I included it because it shows the warmth, humor, and humanity of the film.


Saturday, September 09, 2017

Eating Paleo for Immune Disorders: Our Approach

Our Weekly CSA Haul: Paleo Means Lots of Veggies!
I've been promising this post for a long time, as readers frequently ask about our diet. As background, my son and I (we both have ME/CFS and Lyme disease, plus he has two other tick infections) work with a Registered Dietician who also has an MS in Biochemistry. In short, she is brilliant and understands how all of our complicated health problems fit together and affect us and how diet fits into the puzzle. In addition to ME/CFS and tick infections, we both struggle with chronic yeast overgrowth (aka candida), due in part to long-term antibiotics and in part to the immune dysfunction of ME/CFS. To be clear, my intent with this post is to share what we have learned from our dietician and additional research about how diet affects us and our medical problems and how we eat to try to address some of those problems. Our approach is not necessarily right for everyone (for instance, I know some patients with a sensitivity to FODMAPs, which requires a slightly different diet).

I would call our diet a modified Paleo diet. It is also meant to help reduce inflammation (which research shows is a huge factor in ME/CFS) and is an anti-candida diet, for getting yeast overgrowth under control. The Paleo diet has gotten a lot of press and plenty of patient testimonies for being the best diet for those with immune disorders, like ME/CFS. This article summarizes some of the recent buzz about eating Paleo for autoimmune disease (note that the immune dysfunction in ME/CFS is not precisely autoimmune, but it is an immune disorder).

What Is the Paleo Diet?
You may have heard of the Paleo diet before - it has been in the news for decades. Paleo is short for Paleolithic, and the basis for the diet is supposed to be what early man ate, before McDonalds, refined sugar, and other health hazards came along. Many people think that Paleo is a high-protein, meat-based diet, but that isn't really accurate. I wouldn't even call Paleo low-carb: rather, it is substituting healthy, high-quality, low-inflammation carbs (i.e fruits and vegetables) for less healthy ones like starches, refined grains, and sugars.

What is Paleo then? Basically, the Paleo diet means:
  • No dairy
  • No grains
  • No refined sugars
  • No legumes
  • No refined oils 
  • No soy
  • No alcohol
So what do you eat on a Paleo diet?
  • Lots of vegetables
  • Some fruit
  • Lean meat (preferably grass-fed) and poultry
  • Fish and seafood
  • Eggs
  • Nuts & Seeds
  • Plenty of healthy fats, like coconut, olive oil, fish oil, and avocado
When I began eating Paleo, I really did not start eating more meat/protein than before - I mostly shifted my carbs from grains to additional vegetables. So, this is not the Atkins diet!

Why Is Paleo Good for Immune Disorders, Like ME/CFS?
This kind of diet often works well for those with ME/CFS and other immune disorders for several reasons:
  • It eliminates many (though not all) common allergens, and our immune dysfunction makes us extra-susceptible to food allergies and intolerances. One study showed a full 30% of young ME/CFS patients were dairy intolerant.
  • It eliminates many (though not all) inflammatory foods. Gluten and other proteins in grains, dairy, and sugar are all highly inflammatory in the body when consumed. We already have high levels of inflammation that make our illness worse. The right diet can help to reduce inflammation.
  • It eliminates refined grains and sugars, which contribute to yeast overgrowth, a common occurrence in ME/CFS and other immune disorders.
  • Gluten, gliadin (a similar protein in oats), and casein (a protein in milk) all block one of the methylation pathways. Eliminating these can help to improve methylation, which is very important in ME/CFS. In the words of our dietician: "Dairy inhibits the uptake of cysteine by neurons which impairs the neuronal production of glutathione. Considering the brain and its neurons is the most aerobic organ and glutathione the most important antioxidant, the brain becomes subject to severe oxidative stress. Casein also blocks the reduced folate receptor and the transport of reduced folate into neurons." (I told you she was brilliant).
  • Some immune-specific Paleo diets also eliminate nightshades, like tomatoes, eggplant, and bell peppers because they are inflammatory. We haven't gone that far.

How Is Our Diet Different Than Typical Paleo?
As I said, our dietician laid out our diet plan, starting with the basics of Paleo and then adding or subtracting from there, based on our own needs which I outlined above. So, some differences between a typical Paleo diet and how we eat:
  • Almost no sugar. Regular Paleo includes small amounts of natural sugars, like honey, maple syrup, and agave. Because of our chronic yeast overgrowth, we have to limit even those (and fruits, too). I sometimes use a little bit of honey (which has an antifungal effect and doesn't encourage yeast like other sweeteners), and we often use Stevia, a natural sweetener that does not encourage yeast (and might help with Lyme disease, too).
  • Limited beans and other legumes. Though strict Paleo includes no legumes, we used to eat a LOT of beans, so our dietician said we could have them 1-2 times a week.We probably only eat them about once a week now. My poor son was so miserable with his dietary restrictions that our dietician told him he could have his peanut butter back! He's happy now.
  • Limited red potatoes. Again, strict Paleo is no potatoes, but our dietician said we could have red potatoes (less starchy than the other types) once a week.
  • I use a little butter. Ghee (clarified butter with no casein or lactose) is allowed on Paleo, but since there is almost no lactose in butter, I use it as is - sparingly.
  • Limited fruit, again due to the yeast overgrowth. Pears are fine every day - they don't encourage yeast. Apples, melon, mango, and blueberries are also good choices in limited amounts if you have yeast problems.
Note that our son was on a super-strict anti-yeast diet for his first month or two because he was in such terrible shape - his mitochondria was trashed from too many years of antibiotics (for tick infections) and he had severe yeast overgrowth. He was almost completely incapacitated and desperate to feel better. It worked and got him "unstuck" and then he gradually added things back in to get to the diet I describe here.

So, as you can see, you can make adjustments to suit your own needs. It's really not important to me whether I eat exactly like Paleolithic man or not! I am just trying to do what's best for my health, in a way that is sustainable for us.

But What Do You Eat For...?
I often have people ask me "what kind of snacks do you eat?" or "what can I eat for breakfast?" Here are some quick ideas from our own kitchen. This is by no means a complete list - just to give you some ideas to start with:

Fried Eggs with Veggie Hash for Breakfast

  • Most days I eat veggies and eggs for breakfast, in many different varieties. You can make an omelet, but I usually make a scramble just because it's easier. I saute onions and veggies then add in eggs and scramble it all together. My son likes ham or bacon (nitrate-free) with onions, zucchini, and roasted red peppers. My favorite is a combination I first had at a favorite diner: onions, zucchini, artichoke hearts, roasted red peppers, and kalamata olives (yum!). Our whole family enjoys Mexican eggs made with chorizo, onions, bell peppers, mild green chiles, and a bit of salsa with avocado on top. See? Not boring at all! With all those fiber-rich veggies, you won't even miss the toast.
  • When I'm in the mood for fried eggs (which I love), I make a veggie hash on the side, with roughly chopped onion, pepper, zucchini, and one red potato (or sometimes, turnips or sweet potatoes, in season). For a treat, my husband and I sometimes have a different version of Mexican eggs, like Huevos Rancheros, with mashed beans covered with two fried eggs and homemade salsa made with tomato, avocado, cilantro, and lime juice.
  • Paleo Waffles - when the kids are here, we bust out the waffle iron! Against All Grain (just search for waffle) has a bunch of delicious waffle recipes - we have served these to guests (even picky kids!) who never knew they were grain-free.
  • Our favorite Chocolate Banana Smoothie (recipe at the link) - this is a bit high in sugar (fruit) for me to eat often, but it's a favorite at our house.
  • I do cheat about once every two weeks and treat myself to a bowl of oatmeal, which I love. I use whole oats and make them as Paleo-ish as possible by adding coconut oil, unsweetened coconut, flax seeds, walnuts, and blueberries or raspberries. I sweeten it with stevia and flavor it with cinnamon and a teaspoon of alcohol-free vanilla.
Our Fave Paleo Smoothie with Veggie Chips

  • I often eat a deconstructed sandwich without the bread - turkey slices (or canned tuna or salmon) with lettuce, tomato, avocado, or whatever other veggies I have on hand.
  • Our favorite Chocolate Banana Smoothie - it works for breakfast, but we eat it more often for lunch. When my son comes home from college for lunch, I make a double-smoothie for us to share! I sometimes have veggie chips (like Terra brand) on the side for a bit of crunchy & salty.
  • Homemade soup - most store-bought soups contain rice or pasta or cream, but in the winter, I make a big pot of soup at the beginning of the week (some sort of meat with loads of veggies and broth) and have it for lunches.
  • Left-overs from dinner the night before. When it's just me at home for lunch, this is my usual go-to. I continue to cook for three, even though our youngest is now in college, and save the extra serving for lunch the next day.
  • Salads - the sky's the limit! Start with greens and pile on all the veggies you want, plus some protein and a vinaigrette made with olive oil. Some of my favorites include Cobb Salad (turkey, hard-boiled egg, bacon, tomatoes, cucumbers, and avocados) or Nicoise Salad (tuna, hard-boiled egg, lightly steamed green beans, tomato - I usually leave out the red potato).
Cobb Salad for Lunch or Dinner

  • We often go simple and just sub a second vegetable for the starch in a typical dinner. So, grilled (or broiled or baked or...) meat or fish with two vegetables on the side (or a cooked vegetable and a salad).
  • Dinner Salads - we do this a lot in the summer, when we have lovely fresh lettuce and veggies from our local farm. See my favorites under lunch, but we eat lots of different salads. Our favorite dinner salad is a bed of lettuce with tomato, cucumber, carmelized onions, a small bit of blue cheese (yes, a cheat but it has almost no lactose in it), and sliced steak on top.
  • Homemade soup in the fall & winter.
  • Modified recipes: I still use some of my old favorite recipes, with slight modifications. We eat stir-fries and curries, just without the rice underneath (or with cauliflower "rice" instead). I might leave out breadcrumbs or cheese or other non-Paleo ingredients and add in extra veggies. I find that sources of healthy recipes, like Cooking Light magazine or Curtis Stone's cookbooks (both favorites of mine) are often naturally Paleo or can be easily modified.
  • Find Paleo substitutes for your favorites, like cauliflower rice for rice (recipes in the Paleo cookbooks below) or zucchini noodles made with a spiralizer (see link below) instead of pasta.
  • Paleo recipes. See below for suggestions and links.
Ground Beef & Cabbage Soup for Dinner with Left-overs for Lunch


  • Nuts and seeds - lots of protein and portable, though they should be limited if you are trying to reduce inflammation or avoid oxalates. Pistachios and macadamia nuts are lowest in oxalates. Be sure to get salted nuts to help with OI!
  • KIND bars with 5g of sugar - they make several varieties now that are low in sugar. Our favorite is the Dark Chocolate Sea Salt. Still a bit too much sugar for me, but they come in handy when traveling. They are mostly made with nuts, so the same comments above apply.
  • Coconut yogurt (unsweetened) with fresh fruit. I just discovered yogurt made from coconut milk, and I was thrilled! So Delicious brand makes several unsweetened varieties. I cook with the plain and have the vanilla flavor for snacks. The downside is that it doesn't have the high protein that yogurt made from milk does.
  • Apple or pear and sunflower butter or nut butter. One of my favorite snacks this time of year especially: I cut up an apple and dip it in a tablespoon of sunflower butter - yum!
  • Jerky - there are lots of different varieties, including turkey and salmon. Trader Joe's has a great selection. Look for a brand with no nitrates and low or no sugar.
  • Veggie chips, like Terra brand, can satisfy the desire for crunchy, salty snacks (I found that Target has the best prices, though Amazon is a close second).
  • Although legumes are not strictly Paleo, I occasionally have a bit of hummus with raw veggies. 
  • A friend suggested toasted nori (seaweed) - I need to try that.
  • Extra-dark chocolate (86% cacao or higher) - yes, you can eat chocolate! Use raw cacao powder in baking and smoothies. I sometimes use unsweetened baking chocolate in recipes or to make a simple chocolate sauce (with stevia). And I eat a square of dark chocolate every night with my herbal tea - just choose 86% or higher cacao (there is less than a gram of sugar per square in it). My favorite is Ghiradelli Intense Dark 86% (link below).
My evening treat: herbal tea and extra-dark chocolate

Paleo Recipe Resources

Two of my favorite Paleo cookbooks are Everyday Paleo and Against All Grain (links are to my own reviews for details). These cookbooks include many Paleo versions of favorite foods, including breads and desserts (see my reviews for lists). I also love Everyday Paleo: Thai Cuisine and use it almost every week (but I haven't reviewed it yet). I have also found lots of recipes that are naturally Paleo or easily modified in Curtis Stone's What's for Dinner?

Two Favorite Cookbooks: One Regular and One Paleo
There are LOTS and LOTS of blogs and websites devoted to a Paleo diet with loads of recipes. One I use is Against All Grain, but there are many others, too. Whatever recipe you are looking for, just type it into your search engine with Paleo, and you will probably get lots of results.

Curtis Stone's Squash Curry - So Good!

Some of my own Paleo recipes:
My Dark Chocolate Bark
Eating this way has helped both my son and I quite a bit. It has helped us to get our yeast overgrowth under control (along with other approaches), helped to improve methylation, and reduced GI symptoms (eliminating dairy 12 years ago completely eliminated my GI problems!). Many people also find they lose weight on a Paleo diet, due to getting rid of refined carbs, flour, and most sugar and eating more vegetables.

I hope that will answer some of your questions and get you started on your own healthy eating plan. This was a long post, but I'm sure there are things I've forgotten, so please leave any questions or comments in the Comments below, and I will be happy to answer.

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