Sunday, December 31, 2017
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!)
Thursday, December 28, 2017
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!
Sunday, December 24, 2017
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|
Sunday, December 17, 2017
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?
Monday, December 11, 2017
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:
Thursday, December 07, 2017
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.
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?
|My EM in early November - red, hot, painful, swollen toes|
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.
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 ($4.99 for e-book) 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.
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!|
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.
Tuesday, December 05, 2017
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.
Monday, December 04, 2017
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.