Weekly Inspiration: Happy New Year!

This week's inspiration is appropriately focused on the new year that begins tomorrow. I love the start of a new year, bringing with it a fresh start and hope for a better future.

Here are a few links to help inspire you to have YOUR best year yet - yes, even while chronically ill:

First up, my kind and compassionate friend Toni's article from 2013 that is still very relevant, My New Year's Wishes for the Chronically Ill, published on Psychology Today. Toni's wonderful list of wishes for us, her colleagues in chronic illness, is inspiring in itself, and it can also serve as a guideline to bring more peace, joy, and compassion into your life this coming year. Toni is the author of three wonderful books, any one of which can provide ample inspiration for the new year: How to Be Sick, How to Wake Up, and  How to Live Well with Chronic Pain and Illness (links are to my reviews).

One of my favorite sources of inspiration all year round, TED Talks, brings us a unique list: 10 TED-Ed Lessons to Inspire Your New Year's Resolutions. Whether you want to cut back on sugar, learn a new language, or be kind to the environment, this list offers 10 inspiring short videos to get you started!

And if some of those resolutions about learning new things seem out of reach for you because you are housebound, then check out my article from the ProHealth website on Keep Learning - Even from Bed! with dozens of links to awesome online resources for classes, how-to videos, virtual museum tours, and more. Maybe one of your goals for the new year will be to visit a different museum each month online, without leaving your bed, or learning to knit or taking an online class in a subject you're interested in.

Finally, I have written here on my own blog and for ProHealth often about setting goals when you are chronically ill. You may not be able to train for a 5k or plan a trip overseas or some other "typical" resolution, but you can still set goals to help you improve your life and increase joy in every day. This Throwback Thursday post on Setting Goals for the Chronically Ill has links to take you step-by-step through a simple process for setting - and achieving - measureable objectives, even if you are bedridden. I'll be following those steps in the next few days to set my objectives and targets for 2018.

And if one of your goals for 2018 is to improve your health, then take a look at this blog post on Effective Treatments for ME/CFS - this is a summary of the treatments that have most helped my son and I over the past 15 years. You may have been told there are no treatments for ME/CFS, but that's  not true. It's just that most doctors don't know how to treat it, but it IS treatable. With the treatments summarized in that post, both my son and I have improved dramatically over the years, and we both live fairly normal lives now - still limited by our disease certainly but full, active lives.

Happy New Year! Here's to a healthy and happy new year for us all (I'm toasting you with my herbal tea!)

Throwback Thursday: Setting Goals While Chronically Ill

It's been a busy holiday week, but I wanted to take a moment to share some past posts all about setting goals. I'm not much for resolutions because they tend to be temporary and/or huge changes that are almost impossible to achieve. I go for a longer-term process, with a handful of lifetime goals (things like "Be as healthy as I can be" and "To nurture and enjoy strong, fulfilling relationships"). Then, each year, I set (or review) objectives to help me meet each goal and set specific, measurable targets for each objective. This allows me to take baby steps, all aimed at achieving the life I want long-term.

You can see my Lifetime Goals, with some examples of objectives and targets in this post on My Progress in 2016 and Goals for 2017.

This article I wrote for the ProHealth website, Setting Goals When You Are Chronically Ill, describes my goal-setting process in more detail, with additional examples, and explains how to adapt a goal-setting process when you are chronically ill - for instance, one of my objectives is to rest more!

Here are more examples from my own life in my Progress in 2015 and Goals for 2016 post.

You'll notice I focus heavily on measurable targets - I learned when I used to work in management consulting that what gets measured, gets done! This post on My ME/CFS Improvements in 2014 explains the simple process I use to track how I feel and how much I exerted each day - besides giving me a way to measure improvement, this tracking approach also helps me to see which treatments help, since it can be difficult to see cause and effect with our complex illness.

My goals cover all aspects of my life, but if this talk of improving my health sounds like fantasy to you, be assured that there ARE many effective treatments out there for ME/CFS that can help to improve your symptoms, overall condition, and quality of life - the problem is that most doctors don't know enough about ME/CFS. It's up to us patients to educate ourselves and then ask our doctors for help in specific areas. There are even some things you can try on your own, if you can't find a doctor who will work with you. This post on Effective Treatments for ME/CFS summarizes the treatments that have worked best for my son and I over the past 15 years. We are both pretty high-functioning now.

It's almost that time of year again - I always look forward to the start of a new year and the chance to revisit my goals, objectives, and targets. Happy New Year!

New ProHealth Article: What Makes You Forget? Finding Joy

Sorry the blog has been so quiet lately - just the usual holiday rush here. I have been so overloaded preparing for the holidays - and enjoying some early holiday outings with friends and family - that I've had no energy left over for blogging or even Facebook or e-mail. I had over 400 unread e-mails piled up yesterday! (I am about halfway through those). Today, I need to finish wrapping gifts (these last ones are for my husband so he can't help) and refill our weekly medicine boxes...then we can enjoy our Christmas Eve and Christmas Day traditions.

I know this is a rough time of year for many, so the timing of my latest article on the ProHealth website is just right. It's called What Makes You Forget? and is about those rare moments when - perhaps just for a minute or two - you forget you are sick and just live in the moment. It might happen when you are with a certain friend or when you get immersed in a great book or laugh like crazy at a favorite movie. You can read the full article at that link (and I will post the full text here in a month).

Use the tips in the article to notice those moments that make you forget so that you can have more of them in your life. I hope that your holiday season is filled with plenty of moments of joy.

I'll be back to regular blogging after the holidays. In the meantime, here are a few pics of our early holiday prep and celebrations.

Enjoy the holidays in whatever ways bring you joy!

At the tree farm with my sons - when did they get so tall?

Two reindeer at the tree farm - feeding time!

Our sons - decorating the tree together is one of our favorite traditions

Our finished tree

Dinner out at a Brazilian Steakhouse - a new experience for us!

Watching Star Wars in our new recliner theater - the best!

Beautiful winter sunset

Weekly Inspiration: Compassion

Since we are in the midst of the holiday season, I thought it was a good time to think about compassion and empathy. Ironically, in this "season of giving," we may be even more wrapped up in our own lives than usual. With so much to do and family gatherings to prepare for, gifts to buy, and - for us - trying to rest more so that we can manage holiday traditions, we are all so busy and self-focused that we may be even less tuned in to other people than normal.

Interestingly, in this brief TED talk on compassion, Daniel Goleman explains how studies have shown that the #1 factor is whether a person shows compassion for another person - for instance, stopping to help a stranger in need - is how busy they are and how wrapped up in their own "stuff" they are. Check out his interesting and thought-provoking talk:

Even if some of us are homebound and don't encounter the kinds of situations Goleman is talking about here, we can get wrapped up in our own stuff, even in online communities that are supposed to be about supporting each other. It's pretty easy to get caught up in your own suffering and forget to tune in to other people's suffering. Thankfully, most of our online patient communities are kind and supportive generally, but it can't hurt to remind yourself to listen to someone else and feel empathy and compassion for their own struggles. In fact, that's something that life with chronic illness has taught me - one of its silver linings. I've learned that everyone in life is dealing with his or her own challenges. They may be different than mine (and it never helps to compare challenges and play "who's got it worse?"), but almost everyone you meet - in real life or online - is dealing with some kind of struggles that are usually invisible to others.

So, take a moment in this busy season to get out of your own head and remember to show compassion and empathy for others. Who knows? Your small gesture of compassion could be the thing that turns around someone's day - or even their life.

Couldn't we all use a little more kindness in our lives?

Movie Monday: The Fundamentals of Caring

While my husband was away recently, I selected a Netflix original movie I've been wanting to see, The Fundamentals of Caring. We always joke about watching movies the other wouldn't like when he's away, so I told him this one was about a teen boy in a wheelchair who might die young, and he was happy to miss it! But it turned out to be a very funny, moving story of friendship and hope.

Paul Rudd stars as Ben, a newly trained professional caregiver who went into the field to try to deal with a devastating divorce and loss. Ben gets a job caring for 18-year old Trevor, played by Craig Roberts (he plays David on Red Oaks, a show I enjoyed), who has muscular dystrophy and a LOT of sarcasm. Trevor's mom warns Ben not to get too close to her son because his dad left when he was young, and he was devastated by the loss. But Ben decides to upend Trevor's closely monitored routine and take him on the road trip of his dreams, to see all the strange roadside attractions he's always wanted to see. Despite his mom's misgivings, Trevor and Ben set off in the handicapped van for an eventful cross-country trip. Trevor experiences a lot of firsts on the trip but never loses his sarcastic edge, and along the way, they pick up a cute hitchhiker his age named Dot, played by Selena Gomez, who is dealing with her own  issues.

I really enjoyed this movie. Despite the heavy topics here - severe disability, loss, death, and more - it is filled with a dark humor that often left me laughing out loud. The actors are all excellent, and it's wonderful to see Trevor's life opening up a bit, even though the new experiences are sometimes terrifying to him. Ben helps him to realize his dreams, but along the way - as you might expect - Trevor helps Ben just as much. It's a moving, funny, uplifting film...and it's based on an amazing road trip (one of my favorite things, in real life and in movies).

The Fundamentals of Caring is a Netflix original movie, so it is only available on Netflix.



Oh, and I REALLY liked the movie's theme song, This Is the Only Time We Have by Ryan Miller:

Throwback Thursday: Diet and ME/CFS & Lyme

For this week's Throwback Thursday, I am pulling together some of my past posts about diet, food, and food intolerances & allergies. This topic is important for anyone with a chronic illness but especially important for anyone with ME/CFS and tick infections, as we have in our house. We learned just how important only gradually, but in recent years, diet has played a big role in helping my son and I to feel better and be able to do more.

Food Intolerances
ME/CFS is an immune disorder, and the particular type of immune dysfunction in ME/CFS causes our immune systems to over-react to the presence of allergens. This means that it is very, very common for ME/CFS patients to suddenly develop food intolerances and allergies to foods they have never had trouble with before. In fact, food intolerances are often behind the gastointestinal symptoms that are an integral part of ME/CFS, and eliminating the problem foods can dramatically improve GI symptoms.

That's what happened with me. Before ME/CFS, I drank about a quart of milk a day and loved cheese, ice cream, and other dairy products. I was skeptical when Dr. Bell, one of the first ME/CFS experts who is now retired, suggested I give up dairy, I didn't think it would help, but I tried it for 2 weeks. I didn't see much difference, so I added dairy back into my diet - Wow! Instant cramping, gas, and other GI problems. I gave up dairy...and my GI symptoms went away completely.

A recent study done by Dr. Peter Rowe (another top ME/CFS expert) showed that a full 30% of the young people with ME/CFS in the study were dairy intolerant - and the number is likely the same in adults, thanks to our immune dysfunction. The study also showed a dramatic improvement in quality of life when those kids who were dairy intolerant gave up dairy.

Note that if you are lactose-intolerant (for me, it is both lactose and casein, the protein in milk), lactose is a common ingredient in many medications. The blog post at that link explains how to manage lactose intolerance generally and lists medications that contain lactose.

There have not been studies done on other common allergens, like gluten, soy, eggs, etc. in ME/CFS, but again, our immune dysfunction makes us prone to food intolerance and allergies, so it's a good idea to check with elimination diets.

Eating Paleo
In the last few years, my son and I have switched to a Paleo diet (with our own modifications), and it has definitely helped with ME/CFS, Lyme and other tick infections, and yeast overgrowth. Paleo basically means no grains, no dairy, no sugar. This blog post describes our approach to eating Paleo for immune disorders, with an explanation of why it's a good diet for patients with these diseases/conditions, how we manage it, and lots and lots of recipes and resources to help make it easier (and delicious!).

In addition to diet being essential in managing yeast overgrowth, diet is also very important in improving methylation, a critical step in improving both ME/CFS and tick infections. Several dietary components, including dairy, gluten, and gliadin, block one of the methylation pathways.

Finally, for details on how diet has helped my son and I improve over the years, see My ME/CFS Improvements in 2014 and How My Son Went From Couchbound to College.

How about you? Have you discovered any food intolerances or allergies? What kind of diet has helped your illness?

Heat Desensitization - Erythromelalgia in Remission!

My EM in early November - red, hot, painful, swollen toes

 

 I scarcely know how to write this blog post because I am still shocked and mystified by this whole thing, but my Erythromelalgia (EM) has been in remission for 2 1/2 weeks now. I am absolutely delighted to be wearing socks and shoes again and able to turn up the house temperature a bit, but I still feel like I might jinx it!

What Is EM?
Briefly, Erythromelalgia (EM) is a very painful condition that causes:

• 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.
• Affected areas are hot to the touch and give off heat.
• Some swelling and inflammation of affected extremities.
• Cold makes symptoms better; heat makes them worse - this is key and differentiates EM from  other possible diagnoses.

EM is a rare condition in the general population but seems to affect those with ME/CFS, Lyme disease, and Orthostatic Intolerance (OI, including POTS and NMH) far more frequently. This makes sense because these conditions all cause or are caused by autonomic nervous system dysfunction, which is also behind EM. I wrote a blog post last year describing EM and my own experiences in getting it accurately diagnosed. My own EM is seasonal, which is less common, and flares up when the outdoor weather turns cold (usually October through April), even though cold makes it feel better once it has started (I know, it doesn't make any sense).

My Experiences
So, fast-forward to November this year. We had a very warm October, so my EM stayed in remission longer than usual, but it began to flare up in early November, as soon as the outdoor temperature began to drop. Knowing from previous winters that it gets worse when my feet get warm, I kept the house temperature cool (something my husband hates), kept my feet bare, never wore socks and mostly avoided closed shoes, kept a fan blowing cool air on my feet whenever the pain started to flare up, and slept with my feet out of the covers AND a fan blowing on them to try to control the pain enough so that I could sleep.

I made a trip down to Baltimore to see a dermatologist at Johns Hopkins whom I had heard knew how to treat EM, but that visit didn't help much. I spent most of it trying to explain that yes, I DID have EM, even though my toes didn't look that bad that particular morning - I had kept them especially cold all weekend just so I could manage the long drive! He finally agreed (to the diagnosis I already knew I had!) and offered a compounded pain cream. I accepted the prescription for that but told him I'd really hoped to get at the root of the problem and not just treat the pain. I asked if I could try a medication called Trental (pentoxifyline) that is supposed to help ease blood flow, better allowing the blood vessels in the feet to constrict and dilate as they should, to avoid the excessive blood flow to the extremities that causes a bad EM flare-up. He agreed. Unfortunately, though the Trental seemed to help me temporarily the two days that I took it, it wore off during the night with a severe rebound effect, with the burning pain flaring up all over both feet, far worse than usual. After two sleepless nights where I had to keep getting out of bed to soak my feet in cool water, I gave up on that. (Note that Trental does help some patients).

Then we went on a short vacation to Florida. The pain was horrible on the way down there on the plane (I brought a small portable fan to blow on my feet throughout the flight), but I was hoping my EM would go back into remission with the lovely Florida weather, as it had during a similar trip the previous year. Most of the pain disappeared by the second day of the trip and by the fourth day, when we returned home, my feet were in remission again. That's when I decided to try something new.

My feet after 4 days in Florida - pain & swelling gone, redness almost gone

Heat Desensitization for Erythromelalgia
As I explained in that first blog post on EM, I joined a couple of groups on Facebook for EM patients. In one of those, a patient named Bob posted a long explanation of how he "cured" his EM with heat desensitization. He explained how he gradually got his feet re-adjusted to be able to tolerate heat again by soaking them in warm water, increasing the temperature a little at a time (this process sort of "resets" the dysfunctional nervous system). Bob said that, yes, this was incredibly painful at first, since heat worsens an EM flare-up, but he soon began to notice improvements and within a few weeks, his EM was in complete remission, and he was able to wear socks again and treat his feet normally. (Note that this kind of heat desensitization has also been used successfully in other, related conditions like Raynaud's - see my note at the bottom of this post).

Bob's post caused quite a stir in our group! People wanted details on exactly how he did it and had loads of questions for him. Many people began trying Bob's process and reporting back on their own improvements and remissions.

Intrigued by Bob's story, I looked for more information on heat desensitization for EM but couldn't find much. I read the only two books on EM (both about heat desensitization) available on Amazon: Erythromelalgia: How I Fixed It by Carine Prevot (no longer available) and Secondary Erythromelalgia Survival Guide by William E. Prowse and Lillie Lemon ($6.99 for e-book). Both books are overpriced since they are each 25 pages or less and poorly written (both needed an editor), but it did add to my body of evidence that heat desensitization does work for some people. Prevot used increasingly warmer hot water bottles that she rested her feet on, and Prowse used a complicated approach involving capsicum cream first and then warm water soaks (NOTE: some of the supplements suggested in the Prowse book would make OI much WORSE so should not be tried by those with ME/CFS or OI).

I did ask the Johns Hopkins doctor about heat desensitization, but he said he'd never heard of it. However, living with this condition was affecting my quality of life more and more. Just a few weeks (in November) of keeping my feet ice cold n an effort to keep the EM from flaring up was already very uncomfortable and frustrating. And all my efforts were sometimes for naught, when the EM flared up anyway with terrible pain, especially at night. I couldn't wear socks (or even shoes much of the time), I couldn't get outside or take walks in the winter like I usually do, and I had already broke down sobbing a couple of times from the pain...and the season had only begun! I really did NOT want to go through another whole winter like this.

My Own Heat Desensitization
We had a lot of travel in mid-November, first that trip to Florida and then 5 days in my hometown of Rochester, NY for Thanksgiving. I was really dreading that part because it's much colder up in Rochester, and people keep their houses warmer (everyone kept their house warmer than us!). I was picturing a painful holiday weekend for me, going barefoot in my relatives' homes, carrying the portable fan with me everywhere. My plan was to try the heat desensitization after we got back home.

At the end of our Florida trip, though, I started to re-think that plan and talked it over with my husband. My feet were already in remission from our warm-weather vacation - why go through another painful week and then endure more pain to desensitize my feet? Although nothing about EM makes much sense, it seemed to make logical sense to us to try to keep my feet in their current - normal - condition. Since my feet felt OK when the weather was about 70-80 degrees, why not just try to keep them at that temperature?

So, when we got off the plane in NJ, I immediately changed into sneakers and socks (all I had with me were toe-less socks!) instead of staying in flipflops like I normally would. It was about 45 degrees out that night. On the 2-hour drive home, I let my husband turn the heat up, and I kept my feet in the socks and shoes instead of attempting to keep them cool. When we got home, I put on - for the first time in 3 years! - warm fuzzy socks. It felt great for the moment, but would the pain hit me later?

My favorite warm, cozy winter socks - I missed you!

It didn't. It was rather anticlimactic but an unexpected surprise. I kept wearing shoes and socks, like a normal person does in November. I dug out my old slippers after three years of not wearing them. I let my husband turn the heat up! And, amazingly, I got through the whole Rochester trip - wearing shoes and socks! - without any pain, redness, heat, or swelling in my feet. I tried to just keep my feet at a normal temperature and not overheat them or cool them down.

Now, it has been two and a half weeks with no pain. I'm still in shock. Notice that I didn't title this post Erythromelalgia Cured! It's too soon to say that, and I do expect that it will flare up at some point. If/when that happens, I plan to follow Bob's protocol and get my feet desensitized to heat again with warm water soaks. I will act immediately and not wait for it to get worse. As Bob described in his explanations, the key seems to be to treat your feet normally. If you have EM and want to know more about his process, you can join the Facebook Group Erythromelalgia - Medicines/Treatment, Information and Support and search for "desensitization" in the search box - Bob's very popular post comes up in the search results. Many people--including me--are successful with a simple process of brief hot water soaks, several times a day, with gradually increasing time and temperatures (start at body temperature and never go above 120 F or you could scald your skin).

For now, I am thrilled! I'm wearing socks, shoes, and slippers again, taking walks on cold days, sleeping with my feet under the covers for the first time in three years, and joyfully digging through my collection of whimsical socks. It even makes me happy to see socks in the laundry basket. And I changed my Christmas list - removed yet another pair of flipflops from the list and added in slippers and BOOTS! You can't imagine how exciting this is for me.

I love seeing all those socks at the bottom of the laundry basket!

 If you also suffer from EM, I recommend considering this kind of heat desensitization process. Because my EM goes into remission seasonally, I was able to do it without any worsening of symptoms, but you might have to suffer through some worsening at first. Some people report improvement beginning as early as one day into the process, and based on my own experiences, I would suggest starting the process at a time when your EM is naturally less flared up (for me that was mornings).

NOTE for those with similar (though opposite) conditions like chilblains (aka pernio) or Raynaud's disease. I was fascinated to hear that a close friend of mine put her own Raynaud's into remission using a similar heat desensitization process (that approach was used successfully in this study). Because all of these conditions stem from autonomic nervous system dysfunction and related poor vascular control, it seems that they can all benefit from "retraining" your nervous system to respond normally to temperature changes.

TV Tuesday: Will & Grace (2017)

I finally checked out the new Will & Grace series last week, and I am enjoying it so far!

In case you slept through the 90's and '00's, Will & Grace was a very popular sitcom that ran eight seasons, beginning in 1998, about a gay lawyer named Will, played by Eric McCormack, who lived with a straight interior designer named Grace, played by Debra Messing. The show wrapped up in 2006. In a move you don't see very often in televisionland, it came back this fall after an 11-year hiatus.

The new Will & Grace is pretty much the same old show that everyone loved, only set 11 years later. Grace is now divorced and has moved back into the same apartment with Will that they used to share (temporarily, she says), since Will's relationship also fell apart. Their friends, Jack and Karen, are always around and still the same outrageous characters they used to be. The four of them experience highs and lows together, with the additional challenges of aging.

At the beginning of the new 9th season, the show gets a bit political, addressing some of what is going on in the U.S. these days (the first episode actually takes place partly at the White House), but otherwise, the show is very much the same as the old days. The actors are still great, and the show is still very funny. I am enjoying the way the writers are bringing in some characters and storylines from the original show to either wrap them up or show what's happening now, including Grace's ex-husband, Leo (played by Harry Connick, Jr.), and Jack's son. I've watched four episodes so far and am enjoying it. It's still hilarious, but it can also be moving as it addresses some serious issues, and it is still just a lot of fun. When it first came back, it was supposed to be a limited run of just 8 episodes, but IMDB now shows a total of 16 episodes for this season AND a season 10 still to come!

And if you enjoy watching these lead actors, we really loved Eric McCormack on both Perception and Travelers (can't wait for season 2!), and I also enjoyed Debra Messing on The Mysteries of Laura, where she plays a very different character, a tough NYC cop.

Will & Grace is now airing on NBC, so I've been catching up and watching episodes On Demand. You can watch older seasons (1 through 8) on Amazon for $1.99 an episode or $14.99 for a season or catch up on the new 2017 season on Amazon for $1.99 an episode or $19.99 for the season.



    

Movie Monday: Cloud Atlas

I'm waaay behind on my movie reviews - Mondays are just too busy most of the time! So, today's review goes back about a month or so to when my husband and I watched Cloud Atlas. We came into the movie from two different perspectives - I had read the novel it is based on and he hadn't - so we had two different reactions to the movie (probably the opposite of what you would think!).

Let me start by explaining that I LOVED the novel Cloud Atlas by David Mitchell (review at the link - no spoilers). It was one of those books that just blew me away and immediately rose to my list of favorite books of all time. I couldn't wait to see this amazing book brought to life on the screen, but, as I said, my husband hasn't read it yet, so he went into the movie adaptation cold.

This is a tough story to explain succinctly because it is actually a series of six stories, each set in a different time and place and featuring different characters. The stories, though, are linked in clever ways that aren't obvious at first, but as you watch (or read) you see these small connections. The stories begin in the 1800's and move forward in time to the 1990's and then onto a dystopian future filled with life-like robots and finally to a far distant future where technology is gone and humans - at least in this corner of the world - have reverted to a more primitive agrarian life. Each of the stories is engaging and interesting in itself - and each is very different from the others - but what I love most about this movie & novel is the way that it shows how everything and everyone is interconnected, even across centuries, and how one person's actions might affect someone else many years later and across the globe.

I know that usually when you love a book, you aren't too thrilled with the movie adaptation, but I really enjoyed this one. They used some very clever devices to show that interconnectedness in the film that went beyond what you can do in a book. For instance, they used the same actors for completely different roles in each story. So, Tom Hanks and Halle Berry each play 6-7 different roles in this movie, as do the other supporting actors. Sometimes each one plays a lead role in a story and sometimes a very minor one, but these same faces keep showing up in different guises, which just emphasizes the story's theme of interconnectedness. I absolutely loved seeing my favorite book brought to life in this clever way and watched for the tiny details that connected the different stories, sometimes pausing the movie to point something out to my husband. Since each story is so completely different - one is an adventure on the seas, one is a mystery set in 1970's California, one is a romance, etc. - the movie includes pretty much everything - history, suspense, comedy (the story about Timothy Cavendish is very funny!), romance, sci fi, and more.

My husband found the movie somewhat confusing, which is completely understandable given its complexity. Translating a 500-page book to a 2-hour long movie is always challenging, and with a book that encapsulates 5 completely different but connected stories, it's almost impossible. It helps tremendously if you already know the plotlines and how they connect and you can just sit back and enjoy the spectacular production. So, my husband said he enjoyed it OK but didn't love it.

Bottom line: If this sounds intriguing to you, I recommend you first read the book and then see the movie to see how it translates to the screen and to enjoy the clever ways they visually emphasized those connections between stories.

I am very interested to hear what others thought of the movie - whether you read the book first or not. Leave your comments below!

Cloud Atlas is currently available on Netflix streaming or to rent on Amazon for just 99 cents.

Throwback Thursday: Donate While You Shop!

I had hoped to get this post up BEFORE Black Friday and Cyber Monday, but I am hoping it is still in time to help you...

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, coupons that are available, 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. 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 and click through the site when shopping). You can choose your own favorite charity.

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 or whatever your own favorite charity is! It's like giving ourselves an extra holiday gift.

TV Tuesday: Norsemen

Hi, I'm back! Sorry for the quiet blog, but I was away for most of the past 10 days, first on a rare mini vacation to Florida with my husband and two sons and then up to my hometown, Rochester, NY, for a busy Thanksgiving weekend filled with big family gatherings. It was great to see everyone but completely exhausting, of course. My husband said too bad we couldn't do it in the reverse order and end the week with the quiet, relaxing (and warm) part at the beach!

So, catching up and getting back to business here on the blog...it's Tuesday, so that means a TV review! And our 19-year old son introduced us all to a very funny show while we were on vacation: Norsemen, a parody about Vikings in 790 AD Norway.

My older son and husband, who love the TV drama The Vikings, said that Norsemen is a perfect parody of it - even certain scenes they said seemed pulled right out of the dramatic series and played here for laughs. The show focuses on a small Norwegian village, where the strongest males (and one female) of the clan (including their Chief, Olav) go out on raids and return home victorious with the spoils of their adventures. Back at home, Orm, the hapless and wimpy brother of Olav, takes over as temporary Chief. In the very first episode, the Viking crew is returning home from a raid with some new slaves in tow, including a Roman named Rufus, who is not at all happy to discover how this cruise ends! Rufus creates plenty of problems in the small village and is intent on bringing live theater to this remote region.

The laughs come frequently on this very silly but engaging show. What makes it extra-funny are the glimpses of modern life and language woven into the Viking tale. If you look at the actors' names listed on imdb, you'll see it's an entirely Norwegian cast, but we recognized several of our favorites from other Norwegian shows we enjoy, Occupied and Lilyhammer. Think of Norsemen as a cross between Monty Python and The Vikings - very funny, clever, and often just plain silly. It certainly had my husband and sons quoting entire swaths of dialogue over and over all week and laughing hysterically (much in the way that Monty Python and the Holy Grail affects them!) - and, I admit it, I was laughing along with them.  This show is just plain fun and perfect if you need some mindless escape. Note that there is sex and violence in the show - these are Vikings, after all.

Norsemen is available on Netflix, with two short seasons of six episodes each currently available. We hope there are more to come!

I'm not sure this trailer does the show justice, but at least it isn't giving away all the best lines - there are a lot of laughs in this show:

TV Tuesday: Friends from College

When my husband was away in Europe for work two weeks ago, I was searching for a new show to binge on streaming and decided to give Friends from College a try. Its all-star cast is very funny, but it also tackles serious topics - the very definition of a dramedy.

As the first episode begins, Ethan, played by Keegan-Michael Key, and his wife Lisa, played by Cobie Smulders who was Robin on How I Met Your Mother, are moving to NYC where they will be reunited with their close group of friends from college. The six friends all went to Harvard together and are now facing their 40's. One of the group, Marianne, played by Jae Suh Park, will be sharing her tiny apartment with Ethan and Lisa until they can find their own place. Max, played by Fred Savage who starred in The Wonder Years as a child, is another of their group, now happily living with his partner Felix, played by Billy Eichner. Nate Faxon, who I enjoyed watching on Married, plays Nick, who is still single and still acting like a college boy. The sixth member of the group is Sam, played by Annie Parisse, who is married, has two adorable children, and lives with her wealthy husband Jon, played by Greg Germann, in a big house in Connecticut.

Viewers know right from the beginning of episode 1 that Ethan and Sam have continued sleeping with each other since college. It was an occasional thing for the last 20 years, but with Ethan now living in NYC, life gets a lot more complicated. The six old friends revert to college-aged behaviors when they get together, much to the chagrin of their spouses. Felix is particularly stumped as to why his usually sophisticated partner, Max, turns into a raucous adolescent with these people.

As you would expect from the cast list, the acting is top-notch, even the supporting roles. Fred Savage is especially good as Max, and of course Keegan-Michael Key is hilarious whenever he is on-screen. There are a lot of laughs here but also plenty of drama. The "close" friends actually have a lot of secrets hidden among them, and the show even deals with some serious issues, like infertility (and of course, infidelity, too). So, it's funny but sometimes with an undercurrent of sadness. None of these people is as happy as they pretend to be to their old friends. I watched the entire first season in that week while my husband was away and enjoyed it. It was definitely a bit darker than I expected - but still funny.

Friends from College is a Netflix exclusive show, available only on Netflix. Season 2 will be released in 2018 - I'll be watching it!

Weekly Inspiration: Managing Family Relationships - Holidays & Beyond

With Thanksgiving next week here in the US and the start of the holiday season, I thought it was a good time to repost an article I wrote for ProHealth about this time two years ago: Managing Family Relationships - Holidays and Beyond (you can read the full article at that link or below).

While family relationships can be challenging for those of us with chronic illness all year round, the holidays bring special challenges, including being together with a large group of family members all at once, some of whom may not be very supportive of you. Over the years, I have moved from bitterness and resentment and dreading family gatherings to once again enjoying the holidays with my family. This article includes some tips for managing this holiday season...and maybe even enjoying your family for a change!

What has worked for you?

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!

Throwback Thursday: Treating Herx Reactions

Copyright: antonioguillem / 123RF Stock Photo

Today's Throwback Thursday post is all about treating Herx reactions, something I have been focused on helping my son with lately (and for many years). A Herx reaction (also known as die-off) is basically a worsening of symptoms that occurs when you are treating infections, and it is very common in ME/CFS and Lyme patients. It's caused when the antibiotics or antivirals (or sometimes even antifungals for yeast overgrowth) kill off a bunch of "bugs" in your system that then flood into the bloodstream, causing a severe response from your immune system. It's a fact of life for everyone with tick infections and for most people with ME/CFS who treat tick infections, underlying viruses, or yeast overgrowth. Many patients stop treatment when they get worse, but that is a mistake because those infections are still active behind the scenes and will only make you sicker and sicker. Instead, you need to reduce the Herx reaction (worsening) so that you can tolerate the treatment.

Treating Herx Reactions or Die-Off - Helping Your Body to Detox
This post, Managing a Herx Reaction, provides more detailed information about Herx reactions and summarizes our own experiences in treating my son's Herx reactions (mine with both Lyme and antivirals were short-lived and not too severe). That post includes a long list of recommendations from many sources, including our Lyme doctor and our brilliant dietician/biochemist, that have worked well for our son. I just updated it today.

Last week, I read this blog post at Recovering Kids blog called DETOX the die-off and feel amazing again! (our roadmap to success), which includes even more information about Herx reactions, some of which I had never heard before. So, I can't vouch for everything listed there, but I wanted to share the post because it provides a lot of detailed suggestions. We will definitely be trying some of them.

Treating Underlying Infections
Finally, if you have no idea what I am talking about and have not yet looked into treating underlying infections yourself, I highly encourage you to do that because it often results in significant improvements for those with ME/CFS and sometimes even complete recovery. In fact, for patients who have tried other treatments and nothing seems to help, there are almost always infections behind the scenes preventing them from improving. Treat the infections, and everything gets much better!

The immune dysfunction in ME/CFS causes old viral infections to become reactivated and makes us especially prone to bacterial infections, so treating underlying infections often yields dramatic improvements. For many with ME/CFS, that means reactivated viruses that remain dormant in healthy people - things like Epstein-Barr virus that causes mono or another herpes-family virus called HHV-6 or CMV or various types of enteroviruses (that cause stomach symptoms in healthy people but can linger and remain activated in ME/CFS). This is a treatment pathway that often requires going to see one of the few ME/CFS experts, but is well worth the trouble because it can lead to significant improvement and sometimes even recovery. This blog post summarizes my own improvement after taking antivirals - my virus levels were fairly low (but positive) so my gains were correspondingly small-ish but still important, most critically, an increase in activity level and in mental clarity.

The other kind of infections that ME/CFS patients should look for and treat are the various types of tick infections (Lyme disease is one of those). Tick infections are very widespread now, occurring in every US state and on every continent except Antarctica. Our immune dysfunction puts us at even greater risk than everyone else. Blood tests are not very helpful in diagnosing Lyme and other tick infections - the very best tests for Lyme only detect it about 60% of the time and doctors rarely test for any other tick infections. So, if you have had a negative test for Lyme before, that tells you nothing, since it is so prone to false negatives (you can believe a positive result). We learned all of this the hard way. Our son got sicker and sicker over the course of 3+ years while we chalked it up to "just" ME/CFS. We finally took him to a Lyme specialist (the only way to find out for sure) and found that he had 3 different tick infections! With treatment, he has gone from mostly bedridden to attending college, working part-time, and living on his own. So, this blog post explains all the details of Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections (including how to find a Lyme specialist near you).


Another common outcome of our immune dysfunction is Yeast Overgrowth. This is both due to the specific type of immune dysfunction common in ME/CFS and the fact that many of us need frequent antibiotics (due to recurrent bacterial infections). Yeast overgrowth is often a silent and stealthy factor in our illness - many people (myself included) don't realize it is an issue until they start to treat it and see how much better they feel. Keeping yeast overgrowth under control (that blog post lists many different approaches) helps my son and I both to feel less fatigued, less achy, and have significantly improved mental clarity (i.e. less brain fog).

So, now when you pursue treatment for your underlying infections, you will also know how to deal with any resultant Herx or die-off reaction!

What has worked best for you and your family for Herx reactions/detox?

Movie Monday: Carol

Sticking with my new policy of writing shorter reviews and catching up on my movie backlog in reverse order...I just watched Carol on Saturday night and enjoyed it very much.

Cate Blanchett is wonderful in the title role, as a glamorous wealthy woman in 1950's New York who is in the midst of divorcing her husband, Harge. She adores their little girl, Rindy. While shopping in a department store for Rindy for Christmas, Carol meets Therese, played by Rooney Mara, a young woman working as a store clerk but dreaming of more. Carol leaves her gloves at the counter, and Therese goes to her home (listed on the receipt) to return them. The two women are obviously attracted to each other, though Therese is currently in a relationship with Richard. He wants to get married, but Therese is reluctant. Carol brings light into Therese's life, and the feeling is mutual, but of course, an intimate relationship between two women is strictly forbidden in the 1950's, and Harge uses their budding relationship (and a past affair) as an excuse to demand full custody of Rindy, citing a "moral clause" to prove Carol is an unfit mother.

This is a beautiful, stylistic film that garnered 6 Academy Award nominations, bringing the holiday season in 1952 New York to life, as Carol and Therese fall in love and go on a trip together. Both lead actresses give deep, emotional performances, bringing out both the tenderness of their feelings for each other and the anguish they feel at being kept apart. It's a love story but also a tragedy, as Carol's much-loved daughter is kept away from her. The movie is based on the novel previously titled The Price of Salt by Patricia Highsmith in 1952 and retitled Carol in 1990. I never read the book, but the movie adaptation was visually lovely, romantic, and moving. It ends on a note of happiness, but that comes at a price.

Carol is currently out on DVD and is available for free on Netflix streaming. It is also available for $7.99 on Amazon or included free with a Showtime subscription through Amazon.

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.

     

Two-Part Orthostatic Intolerance Article Published

This past month, I was hard at work on a 2-part article for ProHealth website on Orthostatic Intolerance (including POTS, NMH, and more), which has now been published.

You can read Part 1 here - it covers the basics of what OI is, how it affects people with ME/CFS, fibro, and Lyme disease, and how to easily diagnose it in any doctor's office.

Part 2 covers Treating OI, with a wide range of treatments reviewed, including both non-pharmacological approaches and medications.

Both articles include a list of references, if you want to know more - these are the studies that all the information in the articles came from.

Here on my blog, you can read more about OI and how to diagnose and treat it, plus our own experiences, on this recent Throwback Thursday post on Orthostatic Intolerance. There are links in that post to how to diagnose, plus various treatments that have worked for us.

OI is an integral part of ME/CFS and often present in fibro and Lyme patients, too. It is one of the few aspects of our disease that is easily quantifiable with a simple in-office standing test. Once officially diagnosed with OI (and knowing which types you have), then there are many, many different treatments to try. It can take a bit of trial and error to find just the right combination for you, but most people find OI treatments to be life-changing. They certainly have been for my son and I, allowing us to live active lives without crashing so much. Crashes from exertion are rare for both of us now, thanks to OI treatments.

Have you tried any OI treatments yet? What has worked best for you?

Throwback Thursday: Treating Yeast Overgrowth

Thrush in the mouth Copyright: adam88x / 123RF Stock Photo

Both my son and I have struggled with yeast overgrowth - sometimes called candida - for many years. It is now fairly well-controlled through a combination of probiotics, other supplements, diet, and medication, but it took us both a long time and a lot of trial and error to get to this point.

Yeast overgrowth is extremely common in ME/CFS, due to the particular type of immune dysfunction inherent in our disease. Yeast or candida is a type of fungus that lives naturally in the gastrointestinal tract, including the mouth, and also in the vagina. However, yeast overgrowth occurs when that yeast grows out of control and takes over. This can occur anytime in your life but is especially prevalent for anyone with immune deficiencies (like those with ME/CFS) and anyone who takes (or has taken) antibiotics because they kill off all the good bacteria in the gut that normally keeps the yeast under control.

Yeast overgrowth is one of those sneaky aspects of our disease - it may be a big contributor to your symptoms without you even being aware that you have it! That's how it is for me - when it flares up, I get extra-exhausted with horrible flu-like aches, brain fog, mild sore throat and wonder why, when I haven't overdone and don't seem to have been exposed to any infections. It sometimes takes me a while to realize it's the yeast flaring up again. I get thrush in my mouth when it gets really bad, but some women get vaginal yeast infections and some don't have any obvious signs other than the worsened ME/CFS symptoms. Severe brain fog is a very common sign of yeast overgrowth (or other infections behind the scenes).

This blog post, Treating Yeast Overgrowth/Candida explains all about how to know if yeast overgrowth is a factor for you, why it occurs, and mostly how to treat it. It includes a long list of the treatments my son and I have tried over the years (many of which we still maintain now). I just updated this post this year, to explain how we've maintained control over yeast overgrowth now for many years.

Since yeast overgrowth in ME/CFS stems in part from our immune dysfunction, Treating Immune Dysfunction can also help to control it. That post includes several treatments that have helped my son and I immensely, with all aspects of ME/CFS, including yeast overgrowth.

Loads of high-quality probiotics, some supplements, and sometimes medication can all help to control yeast overgrowth, but diet is a very important aspect of its treatment. This post, Eating Paleo for Immune Disorders: Our Approach, explains all about our diet, which is a modified Paleo diet, with a heavy focus on reducing sugar, yeast, and grains (those things all feed yeast) to help keep our yeast overgrowth under control (our diet also helps with metabolism and mitochondrial function for better energy and brain function). That post includes lots of ideas, links, and recipes for low-sugar treats that are delicious!

So, those are our experiences with yeast overgrowth and the treatments that have helped us to get it under control.

Do you struggle with yeast overgrowth? Is it possibly a factor you weren't aware of? What has worked best for you to get it under control? Please share your experiences in the comments below, so we can all help each other!

TV Tuesday: Wisdom of the Crowd

For my Halloween TV Tuesday post (and my last R.I.P. Challenge TV post), I want to tell you about a new detective show with a twist, Wisdom of the Crowd, that my husband and I have been loving. We binged the first four episodes last week and can't wait for more!

If you saw the movie (or read the book) The Circle, the concept here is similar in some ways. Jeremy Pivens stars as Jeffrey Tanner, a high-tech millionaire who made his money (and his fame) with a hugely popular social media platform. Now, he has left his old company to start a new one with a new kind of social media software that crowd-sources crime solving. With him in this new start-up, no-frills company is Sara (played by Natalia Tena), his partner both in business and romance (though they keep their relationship a secret), and Josh (played by Blake Lee), a brilliant programmer, along with some support staff.

Tanner's motivation in this new venture is the death of his daughter, Mia. The police arrested a man named Carlos (played by Ramses Jimenez) who is awaiting trial in prison, but Tanner is certain he didn't do it (and Carlos continues to profess his innocence). The police and even Tanner's ex-wife, Alex (played by Monica Potter from Parenthood) are convinced the killer has been caught, but Tanner wants to put the power of crowd-sourcing behind the case. Information from the case and new clues are posted online (his new program is called Sophe), users comment or use their phone's cameras to add additional data, and Sophe sifts through it all. For instance, when a user posts a not-seen-before video clip of the front of Mia's apartment, showing a mysterious man leaving the night of her murder, users add their own videos and photos from that night and help look for and identify the "person of interest."

Detective Cavanaugh, played by Richard T. Jones, headed up the murder case. Although he's not convinced, he shares some of Tanner's misgivings that they might have arrested the wrong man, and he wants to be absolutely certain, so he accepts Tanner's invitation to help on the sidelines...though officially in the department, the case is closed. Once Sophe catches on and helps to solve a fresh case, the police department starts to pay some attention to it, and Cavanaugh is officially assigned as liaison so the police can use Sophe as a crime-solving tool.

We are four episodes in so far (episode 5 aired on Sunday, but my husband is out of town!) and totally hooked on this suspenseful and unique show. Pivens has a lot of charisma and intensity as Tanner, and I'm also enjoying Jones in his role as the detective. It is suspenseful, as you'd expect, with a new case each episode while they continue to make progress in Mia's older case. I am expecting - as happened in The Circle - for the crowd to go too far at some point in their zeal to help catch a criminal, and there were hints of that in the first episode. We are both immersed in Mia's murder and enjoying the new cases that come along each episode. There is even a sense of humor and a touch of romance in the show. We can't wait to see what happens next!

Wisdom of the Crowd is currently airing on CBS on Sunday evenings. We've been watching it On Demand to catch up. As of today, all five of the first episodes are still posted On Demand (it says that the first one will come off on 11/4) and for free on the CBS website. Once the free episodes are pulled off, they will be available on CBS All Access (CBS's streaming service). It is also available on Amazon for $1.99 an episode or $17.99 for the first season.

Have you seen Wisdom of the Crowd yet? What new shows are you enjoying this fall?