Thursday, July 27, 2017

Donate to ME/CFS Research While You Shop - Special Bonus!

I have often touted iGive here on my blog, as a way to painlessly donate to your favorite ME/CFS charity - for research, patient support, advocacy, or whatever is important to you. And this month ONLY (ending on Monday, July 31), if you use this link to sign up for iGive, they will donate an extra $5 to the Solve ME/CFS Initiative (my choice of cause) to help further ME/CFS research.

That's it! All you have to do is click that link, provide your name, zip code (for U.S.), e-mail, and a password to sign up for iGive, and they will give an extra $5 to ME/CFS research. You don't even have to use iGive to shop yet - the bonus is just for signing up! It's a win-win, and it costs you nothing.

Then, anytime you need to purchase something online, just start at iGive (you can add it to your menu bar or create a button), and a percentage of your purchase will be donated to the cause that YOU choose. There are plenty of ME/CFS, fibro, and Lyme related causes to choose from.

It only takes 2 minutes to earn $5 for ME/CFS research, so sign up now! Remember this special bonus only lasts until July 31. Sign up even if you don't have any shopping to do now (or even if you don't ever do any online shopping!). Just think how much we could add to research funds if everyone who reads this signs up!

NOTE: Although iGive includes hundreds of popular online stores, Amazon runs their own, separate charity donation program called Amazon Smile. Click the link to sign up and choose your charity there, too.

Tuesday, July 25, 2017

TV Tuesday: Master of None

A year or two ago, I watched a couple of episodes of Master of None, a Netflix comedy, enjoyed it, and then got caught up in other shows and kind of forgot about it. I recently came back to it and ended up watching all of the first season episodes in quick succession and moving onto season two. It's a smart, funny comedy that is different from most.

Aziz Ansari, an actor and comedian who was on Parks & Recreation, plays a 30-year old Indian American actor (basically himself) living in New York. When he's not meeting with his agent, going on auditions, and taking bit parts in ads and movies, he hangs out with his friends: Arnold, a very tall guy played by Eric Wareheim; Brian, an Asian-American played by Kelvin Yu; and Denise, a black lesbian played by Lena Waithe. Think of of Master of None as a more diverse version of Seinfeld. Like that famed sitcom, there is plenty of amusing banter among friends and funny discussions about trivial things in their lives.

What really sets Master of None apart from other sitcoms, though, is its cleverness and how it delves into important issues in our world that are seldom talked about openly - all while making you laugh. In season one, episode four deals with the racism Dev encounters every day in his acting career, as someone like him of Indian descent (even though he is 100% American) is only offered parts as a convenience store owner, an IT guy, or "the Indian friend." He and his friends sit in a bar talking about how many black people are allowed on a show before it is considered "a black show." It's achingly honest but also hilarious. In episode seven, Dev and the other males have an eye-opening discussion with the women at their table about how they are treated in everyday life, and how their experiences are completely different than those of the males.

I love the honesty and wit of this wonderful show. After watching a few episodes, I was hooked and just wanted to watch all of them! I just finished watching the first episode of season 2 today, which is a unique show, filmed in black and white, chronicling Dev's adventures in Italy, with the feel of an old-time movie. Ansari is warm and endearing as Dev, and the supporting cast is all great, too. Aziz's real-life parents play his parents on the show! Although it is a comedy, it is also a moving drama, following Dev and his friends through relationship ups and downs, career mishaps, and family challenges, with plenty of laughs along the way.

Master of None is a Netflix original program, so it is available for streaming exclusively on Netflix. Seasons 1 and 2 are currently available there. Season 1 is also available on DVD (and season 2 will follow). I hope there will be a season 3!




Thursday, July 20, 2017

Our Story Featured on Facing Forward

I wrote a guest post for the wonderful blog, From This Point. Forward., which is hosted by Mariah. Her blog is all about her life with Rheumatoid Arthritis, as the mother of two adorable and active boys. Her posts cover research and other news about RA (an autoimmune disease), as well as inspiration and tips for living with any kind of chronic illness. Check it out!

Mariah hosts a weekly feature, Facing Forward, where a guest blogger answers questions about his or life with chronic illness. I was honored to be a part of this wonderful feature. You can read my full post here:


In it, I discuss treatments that have worked for my sons and I, challenges we deal with, tips for managing each day, and how to stay positive and keep moving forward.

If you want more details on the treatments that have most helped us, check out my own blog post on Effective Treatments for ME/CFS.

Thanks to Mariah for this wonderful opportunity to be featured on her blog. It's a great blog - hope you enjoy it!

Tuesday, July 18, 2017

TV Tuesday: Sense8

Our 22-year old son was home for a while when the college semester ended, and we had finished up our spring TV shows together (Colony and Travelers) and were waiting for our summer show (Orphan Black!!) to start, so we were searching for something new that he, my husband, and I could all enjoy together. We settled on Sense8, a Netflix show, and quickly got hooked on its intriguing supernatural premise.

The first episode or two of Sense8 is a bit confusing (but stick with it) because a lot of different characters are introduced and there is no connection between them at first. Sun, played by Doona Bae, is a young professional woman in South Korea whose father doesn't recognize her accomplishments because she is female. Jamie Clayton plays Nomi, a trans woman living happily in San Francisco with her partner when things go terribly wrong on Pride Day and she ends up in the hospital. Kala, played by Tina Desai, is a beautiful Indian woman engaged to a very eligible bachelor who she is not certain she is in love with. Riley Blue, played by Tuppence Middleton, is a blue-haired DJ in London who may be in too deep with her drug dealing boyfriend. Max Riemelt plays Wolgang, a young German man struggling with his background as the son of a criminal. Miguel Angel Silvestre plays Lito, a handsome Brazilian actor who is a sex symbol on screen but harbors his own secret in his private life. Will, played by Brian J. Smith, is a practical-minded cop in Chicago who can't make sense of what he's just seen. Finally, Capheus, played by Aml Ameen, is a matatu (van) driver in Nairobi, a jovial man known as Van Damme for his obsession with the actor (and his colorful van's motif) whose mother is seriously ill.

Whew - see what I mean about confusing at first? But within a couple of episodes, you get to know each of these characters better. All eight of them see the same vision at the start of episode one, of a woman, played by Darryl Hannah, in a churchyard. Gradually, after that, they each begin to see the world through one of the other eight's eyes, seemingly transporting through time and space to a world very different from their own. In this way, they begin to become aware of each other, especially when one of them is in trouble or in danger.

We have watched 4 episodes so far, and it is more and more engrossing. Exactly what gifts and powers the eight disparate people possess is still somewhat of a mystery - to the viewers and to the eight "sensates" themselves - but we want to see more to find out what unfolds. Single sentence summaries of the show indicate that there are powerful people who want to stop these eight, but we haven't gotten to that point yet in the plot.

The multi-cultural cast are all very good, and you quickly form a bond with all eight sensates, seeing their challenges and flaws as well as their talents. The action moves around from one character (and one place) to another, but quite soon, they begin interacting with each other, as the story becomes more intricate. I hope I haven't made it sound too complicated because by the end of the second episode, you have a good idea who each character is and how he or she lives. The show also has a wonderful soundtrack (see Amazon link below), and after episode 4, you will be singing "What's Up" for weeks (we were!).

Sense8 is a Netflix original program, so it is available exclusively on Netflix. I see that the first season has 12 episodes, and there are already two seasons on Netflix, so I can't wait to see what happens next! Note that Netflix just announced last month that the show has been cancelled after its second season, with possibly a single 3rd season episode finale in 2018 to wrap things up.



Monday, July 17, 2017

Movie Monday: The Dressmaker

Last week, I reviewed a movie I watched while my husband was away recently: Me Before You, based on the best-selling novel. That same week, I watched another movie that is a book adaptation: The Dressmaker, starring Kate Winslet.

Kate plays Tilly Dunnage, a woman in the 1950's returning for the first time in decades to the small, rural town in Australia where she grew up. It's a tiny, insular town where everyone knows everyone else's business. When Tilly arrives, she finds her mother, Molly (played by Judy Davis) in terrible shape: physically frail, barely cognizant and living in squalor. Tilly, always beautifully dressed and in full make-up, sets to work clearing out and cleaning up the decrepit house. It immediately becomes obvious that Tilly is not well-liked in the town, as townspeople gossip about her return and some dark secret from the past about why she left.

Tilly ignores the gossip and not only takes care of her mother but sets up shop as a dressmaker. She worked in fashion houses in Paris and Milan, so she brings haute couture to the Outback and transforms the plain women of the town, one by one. She is extremely talented and is soon a much-revered dressmaker, though the townspeople still gossip. Details of Tilly's childhood, the reason why she left, and the reason behind her cool reception in town gradually become clear. Tilly really has only one ally in town besides her mother: the handsome Teddy (played by Liam Hemsworth), whose family are also outcasts in town.

Tilly and Teddy become closer, as details of Tilly's and the town's history are slowly revealed, and the women of the town become more and more glamorous. Tilly is not one to forgive and forget, though, and as she remembers how various townspeople wronged her as a child, she plots revenge against each of them.

The tone of this movie is much different than I expected. Rather than a straightforward drama, there is actually a good bit of dark humor and satire here. Yes, there is also tragedy and sorrow, but often there is a tongue-in-cheek aspect to the story. Colors in the film are super-bright and vibrant (especially after Tilly dresses the town's women in gorgeous fabrics) in contrast to the dull sameness of the surrounding countryside and decrepit town. The seemingly sweet story of the transformation of the town's women is underlaid with the dark backstory and Tilly's behind-the-scenes scheming. I was pleasantly surprised by the dark humor and enjoyed the film overall. Kate Winslet is wonderful in it, as are her supporting cast, including Hugo Weaving as the flamboyant, cross-dressing town police officer, who is thrilled with Tilly's fashion sense.

The Dressmaker is currently available on DVD and is available for streaming free for Amazon Prime members (or $3.99 to rent or $12.99 to purchase for non-Prime members). It is only available on DVD through Netflix.



    

Tuesday, July 11, 2017

TV Tuesday: Fleabag

With my husband and sons out of town two weeks ago, I had a quiet five days to myself at home, so I wanted to indulge in some "me time," enjoying something new on TV. I discovered Fleabag, a short British Amazon series. It looked like a funny, sexy comedy - perhaps along the lines of Chewing Gum (which I loved) - but it turned out to also have plenty of depth to it.

Fleabag is adapted from an award-winning play, and its lead actress, Phoebe Waller-Bridge, starred in and wrote both the play and the TV series. She plays an unnamed single woman, living in London, looking for love, and caught up in the crises of her daily life. Her sister, Claire, is seemingly perfect, married to a handsome American, thin and pretty, and with a life that seems perfectly put together. Though they don't have a lot in common, the two sisters do sometimes come together, in grieving for their mother, being disgusted by their inappropriately blunt stepmother (who was/is godmother to the narrator), and rolling their eyes about their inept father.

The narrator, who I guess can be referred to as Fleabag, also has an on-again, off-again relationship with a boring guy named Harry and a string of hilarious encounters (during the off periods) with other guys, including a man she meets on the bus who has teeth like a rabbit and a late-night booty call in the first episode who wants anal sex. Shortly into the first season, we also find out that Fleabag recently lost her best friend and business partner in an accident, which suddenly puts everything else into perspective and adds a significant layer of emotional depth.

The first season is only six half-hour episodes long (as is more the norm in the UK), but there is a lot packed into those three hours of television. Fleabag often looks directly into the camera to share an aside with the audience (or sometimes, just a look that says it all), again reminding me of Chewing Gum. The overall result here is a fascinating main character with interesting supporting characters, moments of laugh-out-loud hilarity, and moments of quiet introspection, too. It's the life of a modern woman, with all of its complexities and challenges (and more laughs than in a typical life!). This mix of humor and real-life emotion reminds me very much of another British Amazon show that my husband and I enjoy, Catastrophe. Just watching the trailer (below) reminded me again of how much I enjoyed this funny, moving, outrageous show - and it's perfect for binging.

The 6 episodes of season 1 are available on Amazon Prime. I was very excited to see that a season 2 is planned for 2018 - I can't wait!



Monday, July 10, 2017

Movie Monday: Me Before You

My husband was away for a week recently, and my sons were on vacation, so I had five days all to myself! A couple of evenings, I watched movies - choosing girly movies that the rest of my male household would never watch with me.  On my first evening alone, I chose Me Before You, a movie adaptation of a novel by JoJo Moyes I have wanted to read for years.

Me Before You is a sweet romance (that's why my husband and sons wouldn't be interested in it!). Sam Claflin plays ruggedly handsome, wealthy Will. At the start of the story, Will is at the top of his game - happy, successful, and engaged to a beautiful woman. On the other side of town, Lou, played by the adorable Emilia Clarke, lives in her childhood bedroom in her parents' house, to help them out. When she loses her job at the local cafe, the whole family is worried about the loss of her income.

Lou finally finds a new job at the huge castle in town (this is England). The wealthy Traynors are looking for a companion to help with their son, who was paralyzed in an accident. You guessed it - that scruffy-looking guy in the wheelchair is Will, but now he is sullen and depressed about the turn his life has taken. He has a muscular physical therapist/caregiver to help with the big stuff, but Will's parents want Lou to spend time with their son, to keep him company and get him re-engaged with life.

The plot from that point on is pretty predictable, but it's still an emotional movie and surprisingly fun. Much of the fun comes from Lou herself, who dresses in bright primary colors, wild patterns, and often wears her hair in braids or little pigtails. She is full of life, always smiling, and a good foil to Will's dark moods. She comes up with a plan to try to show Will that his life can still be full of joy and worthwhile.

As I said, the plotline isn't terribly surprising, but the story is well-executed, warm, and fun. The two main actors are both charismatic and engaging and pull you into their story. I recall hearing some complaints from fans of the novel when the movie first came out, but I can't speak to that since I didn't read the book. I did have one problem with the movie - its ending. I don't want to give away any spoilers, but suffice to say here that complaints from disabled people about the movie's ending and its message are definitely valid. Generally, though, up until that point, I enjoyed it. It made me smile and laugh and - yes, I cried, too. It was a mostly entertaining evening, though I would have preferred a different ending.

Me Before You is currently available on DVD and streaming on Amazon (free for Prime members; others can rent it for $2.99).



    

Friday, July 07, 2017

LDN 2017 Conference Coming in September



I have written often here on my blog about low-dose naltrexone (LDN), a medication that is used in tiny doses to help normalize the immune system in a wide range of medical conditions and diseases, including ME/CFS, fibromyalgia, and Lyme disease. My son and I have both taken LDN for 10 years now, and it has helped us a lot. I felt better - less fatigue, more energy, more alert, improved mental clarity - from the very first morning after I took my first bedtime dose. You can read all about LDN, what it is, how it works, and our experiences with it in this post.

There have been hundreds of research studies on the use of LDN over the past 20+ years (unfortunately, as you might expect from our lack of research funds, none yet on ME/CFS), including some very positive studies on using LDN for fibromyalgia. You can see a long list of LDN research studies, conducted from 1991 through 2013.

So, the reason for this new post is that the LDN Research Trust is hosting its annual LDN Conference in Portland, Oregon, on September 21-24. In addition to attending the conference (which probably few of us can manage), they are providing recorded presentations with pdf downloaded documents via a Livestream option so that anyone, anywhere can watch the presentations of interest to them (at any time - they don't have to be watched live). You can even get Continuing Education Credits from some of the Livestream options.

Some of the presentations included are on the topics of using LDN in:
  • Thyroid disease
  • For children
  • Lyme disease and other tick infections (multiple presentations)
  • Autism Spectrum Disorder (there has been extensive research on LDN for autism in kids)
  • Inflammatory Bowel Disease
  • Celiac Disease
  • Cancer
  • POTS (a type of Orthostatic Intolerance which is an integral part of ME/CFS)
  • Bipolar Disorder
  • Hashimoto's disease
  • Fibromyalgia
  • and more!
For more information on the conference, the Livestream options, and the presentations and speakers, click on the link below:




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

Sunday, July 02, 2017

New ME/CFS Pediatric Primer Published!

Kids & teens with ME/CFS speak up in DC in 2011
Get your horns and confetti ready - it's time to celebrate! Dr. Peter Rowe, renowned pediatric ME/CFS and OI expert at Johns Hopkins, has teamed up with his colleagues around the world to write comprehensive guidelines on the diagnosis and treatment of ME/CFS in children and teens. This ME/CFS Pediatric Primer has been published in a mainstream medical journal, Frontiers in Pediatrics, where it will be seen by doctors all over the world. This is a HUGE step forward for all of us and should go a long way toward educating both pediatricians and primary care doctors about the care of kids with ME/CFS (and adult patients, too).

The full title of the paper is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer and you can read its full text and share it with your doctor(s) at that link.

The primer itself describes its purpose:
"While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis. This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents."

Wonderful! It is a long document, with plenty of detail on both diagnosis and treatment. It explains that few studies have been done on children with ME/CFS but that the guidance in the document is based on what research there is, plus the extensive clinical experience of the authors. It mentions the presence of orthostatic intolerance right in the introduction! It also emphasizes several times that ME/CFS is a physical illness and not a psychological condition and explains over and over that some children and teens may be homebound, in a wheelchair, or even bedridden from ME/CFS. And, of course, it explains in detail WHY you can't "cure" ME/CFS with exercise (GET) or cognitive behavioral therapy (CBT) and why it may be harmful to patients to try.

The primer includes sections on:
  • Etiology and Pathophysiology (that is, how the disease starts, what keeps it going, and its effects on various systems in the body)
  • Adolescent Development
  • Clinical Diagnosis (which includes a very helpful worksheet for doctors to aid in recognizing ME/CFS in kids)
  • Management/Treatment
  • Co-Morbid Conditions (including OI, EDS, food intolerances & allergies & more)
  • Areas of Special Clinical Concern (includes management of severely affected patients)
  • The School System
  • Appendices A through G (which include Fact Sheets for schools, sample doctor's note for school, a more complete discussion of OI, and more)
Overall, it is an excellent document and will provide far better care of pediatric patients than what is currently available.

However, I would have liked to see mention of or more detail on the following treatments to further help young patients (links provided explain more, including how these treatments have helped my son and I):
  • Treating sleep dysfunction - There is a section on sleep dysfunction but no mention of the typical mechanism behind it in ME/CFS (light sleep, mainly in Stages 1 & 2 without enough deep Stage 3 & 4 sleep caused by endocrine dysfunction that causes disruption in normal hormones that provide deep, refreshing sleep). There is a small table listing medications that might help in treating sleep dysfunction, and it does include tricyclic antidrepressants or TCAs (when used in small doses at bedtime, these lose their antidepressant properties but help to increase the hormones necessary for normal, deep sleep). However, the table lists amitriptyline, which many patients including myself find too sedating, and makes no mention of trazodone and nortriptyline, the two milder TCAs that are more commonly used to to effectively treat sleep dysfunction in ME/CFS, including in kids and teens. These two meds have worked beautifully for my son and I for over 12 years and for many other young patients.
  • Treating immune system dysfunction - There is a brief section on this critical topic, but the only treatment mentioned is IVIG, which is very expensive and sometimes difficult for the patient and not always approved by insurance. There is no mention at all of low-dose naltrexone (which I know Dr. Rowe prescribes for some patients) or inosine, two very safe and very cheap approaches to helping to normalize or balance the immune system that have helped my son and I immensely. 
  • Looking for and treating underlying infections - There is a brief mention that antivirals are used sometimes to treat adult ME/CFS patients and that there have been no studies on the use of antivirals for children. The section on co-morbid conditions also mentions the possibility of infections, like Lyme disease. Often, though, underlying infections are a critical component of ME/CFS and diagnosing and treating them can bring dramatic improvements. In people with ME/CFS, the immune system dysfunction that is part of our disease can cause old, dormant infections (that are harmless to most people) to reactivate. The primer does explain that mono (caused by EBV) is a common trigger for ME/CFS in kids and teens, but there is no mention of the fact that treating that initial case of mono with antivirals within the first few years of ME/CFS can bring improvement or even full recovery. And many people with ME/CFS discover that they have tick-borne infections, like Lyme disease, often many years after fruitless treatment of their ME/CFS (my son ended up having 3 tick-borne infections, in addition to his ME/CFS, that we missed for over three years). Experience has shown that searching for and treating these kinds of underlying infections can bring dramatic improvement in patients and return to a more normal life or even full recovery.
  • The prevalence of food intolerances - Dr. Rowe himself authored a study that found that a full 30% of his young ME/CFS patients in the study had developed an intolerance to dairy, so I was surprised that this statistic - backed up by a study - was not included in the primer. There is some vague mention of food intolerances in the section on co-morbid conditions and the section on GI symptoms, but the section on Dietary Management doesn't recommend eliminating common allergic foods on a trial basis. Eliminating diary almost completely eliminated GI symptoms for my son and I. From what is written here, I can imagine kids being put through all kinds of invasive testing for co-morbid conditions when they really just need to eliminate dairy or gluten or other common allergens from their diet.
  • Treating methylation issues - Oddly, one of the references at the end of the primer is to a study on the presence of genetic methylation problems in ME/CFS patients, but there is no mention in the body of the document of methylation at all. There are a few mentions of B12 supplementation (B12 is critical to the methylation process), but no mention of folate or other aspects of methylation. Treating methylation has helped my son and I very much, and I know this approach has helped many other young patients in our Parents group on Facebook.
So, I am a little disappointed that the treatment section either doesn't mention or doesn't include details of all of these treatments that have been crucial in improving the overall condition of my son (and myself) as well as countless other pediatric patients (I lead an online group with over 600 parents from all over the globe, so I hear about what works and what doesn't for their kids). I do understand that the doctors who wrote this document were trying to base their recommendations on studies and were focused on doing no harm, but there aren't very many studies on treatments for ME/CFS (pediatric or adult), and they stated up front that their advice was based in part on clinical experience - and I know patients of Dr. Rowe's that have benefited from everything I have listed here.

All that said, my criticisms are minor. This document provides well thought-out guidelines for any doctor treating pediatric ME/CFS patients and a good starting point. Just the inclusion and explanation of Orthostatic Intolerance alone will provide very helpful information to doctors treating kids with ME/CFS, as treating OI often brings dramatic improvements, especially in kids.

This primer is certainly a giant leap forward from where we are today, with most doctors not even realizing that ME/CFS is a serious disease that can completely incapacitate kids and thinking there are no effective treatments (or worse, thinking that forced exercise is the way to treat ME/CFS).

A big thank you to Dr. Rowe and his team for once again blazing trails for pediatric ME/CFS!

Tuesday, June 27, 2017

TV Tuesday: Food Network Star

So, you may have noticed that after several years and many dozens of TV Tuesdays, I have not reviewed a single reality show. That's unusual, given how much of what is on TV now is reality TV. There's a simple reason for that: I really don't watch reality TV. I prefer scripted dramas or comedies and watch a very wide range of those, but there are only two reality shows I watch.

One is The Amazing Race, which is still - well, amazing after all these years. We used to watch it with our sons and loved cheering the teams on together, but I'm the only one left in my family who still watches it. The other reality show I watch is Food Network Star - I love to cook, I love to eat good food, and I enjoy this reality show that focuses on improving skills in the kitchen and on camera. The bonus: my son who rarely watches TV will sit and watch it with me if I turn it on during lunch!

The concept of Food Network Star is quite simple (and obvious from the title!) - it is a competition to find a chef who will be given their own show on Food Network. Pretty cool. The really cool part is that not all of the contestants are professional chefs (though many are) - some are caterers or chefs-in-training or even just people who cook for their families. There are usually 12 contestants in all, and each week presents them with different cooking challenges. Sometimes they work in teams and sometimes they are solo. Challenges almost always include some sort of presentation at the end, with the contestants learning how to handle appearing on camera. Usually one person (sometimes two) is eliminated each week, based on the appearance and taste of their food and the quality of their presentation. At the end, three finalists record pilots for their own shows, and one person is chosen as the winner and goes on to have his or her own Food Network show.

I enjoy watching the challenges, the cooking, and the presentations, but it is also fun to watch the relationships that develop over the course of the show. One reason I like this show and not other reality TV is that I really don't enjoy watching people be mean to each other! The contestants here are generally supportive of each other, and the judges - lately, Bobby Flay and Giada De Laurentiis - are also kind and supportive, often giving someone who messes up but seems to have potential another chance.

The show is now in its 13th season (episode 4 just aired). I think this is the 3rd or 4th season I have watched. It's fun to see one of the contestants on Food Network later, or even - occasionally - making it big. I just discovered in researching this post that Guy Fieri - renowned now for Guy's Big Bites and Diners, Drive-Ins, and Dives (one of our faves) - was the winner of season 2!

Season 13 is now available On Demand through cable providers. My own On Demand doesn't list the episodes in order (for some strange reason), so I refer to this episode list to figure out which one comes next - the show really doesn't make sense if you watch it out of order! You can also watch full episodes of the current season for free on the Food Network website. The current season - and most past seasons - are also available on Amazon for $1.99 an episode or a full season starting at $9.99 (some are longer than others) - see links below. And if you are interested in the history of the show and past winners, I found the Food Network Star Wikipedia page very interesting.

Do you watch any reality shows? Have you seen Food Network Star yet?



         

Monday, June 26, 2017

Movie Monday: Wonder Woman

During our recent vacation camping in Vermont, my husband and I had one cold, rainy day to contend with, so we left the campground to go into town. We met old friends for lunch, did some shopping, and then decided to just make a full day of it, with dinner and a movie in Morrisville, VT. The tiny movie theater there was showing the brand-new Wonder Woman movie, so we decided to see what all the fuss was about. We enjoyed this action-packed adventure very much.

I grew up in the 70's with the Superfriends cartoons and Lynda Carter as Wonder Woman on prime time, so I am well-acquainted with the famed female superhero. This new look at Wonder Woman, in the wake of dozens of comic book superhero movies in the past decade, finally gives her her due.

Israeli actress Gal Gadot stars in this new Wonder Woman film as Diana, Princess of the Amazons, later known as just Diana Prince. The movie opens on the secret island of the Amazon women, where they live and train together in a peaceful society. Connie Nielson plays Diana's mother, Hippolyta, Queen of the Amazons, and Robin Wright stars as Antiope, Diana's aunt and the fiercest warrior among this race of warrior women. Lilly Aspell is wonderful (and adorable) as the young Diana, eager to learn to fight, against her mother's wishes.

The Amazons' peaceful life is shattered when a WWI pilot crashes into the sea near their island, somehow getting through their protective barrier, followed closely by a German ship that is chasing him. After the Amazons defeat the German invaders, Steve Trevor, the downed pilot and spy who is played by Chris Pine, explains to Diana about the war that is tearing apart the human world. Diana, now a courageous young woman, feels a strong and compassionate need to help stop the war and leaves the island with Steve, despite her mother's pleas to stay.

Once in London, Steve and Diana try to deliver Steve's urgent intelligence about a new German chemical weapon to the British leaders, but they are unsuccessful in convincing them to act on this knowledge. Steve gathers a few friends, and their ragtag group heads off for the front to try to disrupt the German plan on their own. Along the way, though the men are mostly accustomed to the ravages of war, Diana is appalled by the suffering she sees and refuses to leave needy people unassisted. She gradually discovers powers that she didn't know she possessed.

As you would expect from any superhero movie, Wonder Woman is packed with action and suspense. Its battle scenes often incorporate slow-motion action so you can see Diana's moves up close. Given the subject matter, there is also the underlying spy movie plot, pitting good against evil, complete with mad scientists. What makes or breaks a superhero movie for me is the presence of humor, and there is plenty here, mostly through the motley crew Steve has assembled and some fish-out-of-water stuff when Diana visits London. There is also a hint of romance, as Diana and Steve are clearly attracted to each other.

The cast of the movie - both the Amazons in the beginning and the main characters in the war sequences - are excellent, and Gal Gadot seems like the perfect Wonder Woman (no offense, Lynda Carter). We both thoroughly enjoyed this suspenseful and entertaining movie. I'm not a huge fan of superhero movies, but I liked the humor and compassion in Wonder Woman, and I looking forward to its sequels.

Wonder Woman is currently in theaters. The DVD release is estimated for sometime in August, and you can pre-order both the DVD and the streaming version on Amazon now (links below).



    

Sunday, June 25, 2017

Weekly Inspiration: The Restorative Power of Nature

My husband and I have just returned from a week-long vacation in Vermont with our camper (hence the lack of recent blog posts!). It occurs to me - again - after spending a week mostly outdoors just how restorative and rejuvenating nature is. You can see more of my photos of the beauty of Vermont's natural areas here (or read about the VT bookstores and restaurants we enjoyed!).

Spending a week living in our camper in state parks, surrounded by forests and trees, lakes and streams, sunshine and blue sky, is a centering experience for me. It brings me back to my essential self. Although I try to get outside most days, my life is filled with obligations toward kids and other family, my home, my work, and even my blogs. I spend an enormous amount of time on my laptop, and when I leave the house, it is usually to run all over town doing errands or racing to get my father-in-law to a doctor's appointment or some other urgent matter. When we are camping, there is no internet, no electronics of any sort (we do bring our cell phones in case of emergency but we don't have smart phones), no obligations, and no to-do list taunting me!
Enjoying the outdoors at Emerald Lake State Park in Vermont
More important, though, I have come to understand, is not just the vacation from my usual life but the opportunity to spend so much time outdoors. Throughout the week, I can feel my levels of stress drop as I relax and adjust to the outdoor life.

It turns out I'm not the only one who thinks this way. Lots of research has been done on the effects of nature on people, much of which Florence Williams describes eloquently in this brief TED Talk:



She cites studies that have found that time in nature - even as little as 1 minute! - reduces stress, improves creativity, reduces self-criticism, and increases kindness. Spending time in nature has very real physical effects on us humans, including improving our immune function, as measured by Natural Killer cell function - something everyone with ME/CFS certainly needs! Williams also describes various projects being undertaken around the world to make nature more available and accessible, even to city dwellers - there's some pretty cool stuff going on! South Korea is even creating "healing forests" across the nation, where people can enjoy the healing effects of nature, both by themselves and in guided activities.

Back home, I have a long-standing goal to spend at least 10 minutes a day outdoors. That may not sound like much, but the research says it helps....all I know is that I feel better when I connect with the outdoor world each day. Today, I took a short walk around my neighborhood and am now writing this out on my back deck, lying in my favorite comfy bungee chair, looking up at the sky, feeling the breeze, and listening to the birds in the trees.
My favorite outdoor spot at home on our back deck

Try it yourself! Make time each day to get outside, even if it's just out to your own backyard or deck or patio for a few minutes. Lie down in a hammock or reclining chair. Leave the electronics inside and tune in to the sights, sounds, smells, and feelings of being outdoors - you'll be amazed at what you notice!

I wrote another post about nature, based on the inspiring words of Anne Frank, an older post on The Joy of the Outdoors, and a recent post about exactly HOW people with chronic illness can manage to enjoy camping and the outdoors, based on our own experiences.

How do YOU enjoy the outdoors? What positive effects have you noticed from being in nature?

Tuesday, June 20, 2017

TV Tuesday: The Fall

I am just back from a week in Vermont with my husband - camping, enjoying Vermont's quaint towns, visiting bookstores, great food, and of course, lots of down time for reading! Since our sons left for college, and my husband and I are now often traveling on our own, we have established a new habit when camping. In the evening, we watch a TV episode on DVD on my laptop in our pop-up camper (before we go to bed for reading time). We've been working our way through Dexter, since we have all the seasons of that show on DVD (we gave them to my son years ago). You can read my review of the show at the link. We are now up to season 3.

Back here at home, in between the spring and summer network TV seasons, we've been enjoying some streaming shows, most recently The Fall, a very dark and creepy Irish detective show.

Gillian Anderson (of X-Files fame) stars as Stella Gibson, a cold-seeming Detective Superintendent who's been sent to Belfast to review a case involving the murder of a young woman whose father is a prominent businessman in the community. While she's there, another murder occurs, and Stella realizes there is a serial killer on the loose. Stella works the cases along with the local detectives, and in the first episode, we see a very different side of Stella as she boldly invites another detective back to her hotel room for a passionate night.

Meanwhile, viewers also see things from the perspective of the serial killer, Paul Spector, a seemingly normal family man who lives with his wife, a nurse who works in the NICU, and two small children. He's an affectionate father at home but goes out at night and murders women in cold-blood, often posing their dead bodies in intimate ways. As Stella and the police force collect clues and get closer to Paul, his very controlled life starts to get more and more unbalanced, as his two lives threaten to collide.

This is a dark and compelling show, with a seriously high creep factor! To see Paul murder a woman and then, hours later, hug his little girl and tuck her into bed is absolutely chilling. Stella becomes more and more obsessed with the case, and Paul begins to pay attention to her as well. This show is unusual for a detective show, in that it involves a single case spread over time, rather than a new case in each episode (reminding me a bit of The Missing). The tension builds as Stella gets closer to identifying Paul, and Paul becomes more desperate to fulfill his sick needs and stay away from the police. The cast is all excellent, especially Gillian Anderson, with her cool exterior hiding a passionate center and Jamie Dornan as the super-creepy Paul. We also enjoyed seeing Archie Panjabi (aka Kalinda from The Good Wife) as the medical examiner.

As is typical with shows from the UK and Ireland, the seasons are short (just 5 episodes in the first season). We are into the second season now and are totally hooked...though we often watch The Fall first and then something a bit lighter before bed! All three seasons are available on Netflix or you can get the first two seasons on Amazon streaming for $1.99 an episode or $8.99 a season or on DVD (links below).

Have you seen The Fall yet?  Which detective shows do you enjoy?



    

Sunday, June 11, 2017

Weekly Inspiration: Music

Amazingly, with all my posts on inspiration and joy, it looks like I haven't really written much yet about music.

Music is a great source of joy for me and provides a great pick-me-up when I am feeling down. Like most people, I have certain songs I turn to that never fail to lift my spirits. I grew up in the 70's and 80's, so most of my favorite songs are pop and rock, from then to now. Some work for me because of the lyrics, some have beautiful, uplifting melodies, and some cheer me up just because they are great to sing along with. It's hard to feel down when you are belting out "Bohemian Rhapsody" by Queen!

Here are a couple I have been listening to this week:

Believer by American Authors - When this song was first released in 2014, my oldest son posted it on my Facebook wall and wrote, "I know you will love this new song, Mom!" He was right - he knows me well, and he and I have a special connection from all those years of sick days spent together. This is a wonderfully uplifting song, with a great combination of upbeat, optimistic lyrics and a peppy tune. Here's a version of the song with the lyrics shown:



Though you should also check out the band's original video because it is really cute and clever (though it has nothing at all to do with chronic illness):



The other song that's been in my head all week was thanks to the Netflix show Sense8, which we've been watching with our son (review coming up next week!). This show is all about a strange, psychic connection between 8 people all over the world. At the end of episode 4 (I think), all 8 people - each in a different part of the world - start singing the same song: What's Up by 4 Non Blondes. I'd never heard of the song before, nor the band, but it's a very catchy song that really gotten into my head. It's another song that wasn't written about illness but feels applicable and lifts my spirits:



I have a playlist on my iTunes called Cheer Up Music, that includes a wide range of spirit-lifting songs, like:
  • The River of Dreams by Billy Joel
  • Best Day of My Life by American Authors 
  • Breathe In, Breathe Out by Mat Kearny (from Volume 3 of the Grey's Anatomy soundtrack)
  • Days Go By by Keith Urban
  • Happy by Pharrell Williams (a trite choice but I love it!)
  • Never Let Your Fire Go Out by The Radators (a favorite band from New Orleans)
  • Sing by the Glee cast
  • Such Great Heights by The Postal Service (love their whole album)
  • Sunshine on My Shoulders by John Denver
  • I Will Survive by Gloria Gaynor
I have about 100 songs on the list, so this is just a sampling, but you can see it's a wide variety - simply the songs that make me feel good!

If you're on Spotify, check out the Happier 911 playlist, put together by the listeners of the Happier podcast. There are a few strange choices there, but it's all songs that podcast listeners said lift their spirits.

How about you? Do you listen to music when you are feeling down?

Which songs lift your spirits and cheer you up?

Saturday, June 10, 2017

Good News in ME/CFS Advocacy & Research

How about some good news for a change? I don't know about you, but I am overwhelmed by what I hear on the news each morning and what it might mean in the future for me and my family.

So, here is some good news in the world of ME/CFS, some definite signs of progress!

NIH Launches In-Depth In-House Study of ME/CFS
This study was first announced in 2015 but has received some recent publicity and seems to be moving forward. This article explains how extensive the study is and why it is important. How is this different from other research studies?
  • It is being conducted by the NIH itself, using its own in-house experts. Given all the recent news about proposed slashes to the already tiny budget for ME/CFS, this is huge news, that the NIH has invested in our disease this way.
  • It is perhaps the most extensive study ever undertaken, using strict diagnostic criteria for ME/CFS and an enormous battery of tests, including sleep studies, immunological testing, genetic testing, different types of MRI, exercise testing, metabolic testing, and more - all in one study.
  • Participants in phase 1 include 40 severely ill ME/CFS patients who meet the strict criteria, plus another 20 patients who previously had Lyme disease (that part is exciting to me!), and 20 healthy controls.
  • In the first phase, over 3-5 years, they are searching for biological markers, the second phase will take that information and apply it to a larger population of patients, and the third phase will try interventions/treatments.
Stay tuned for results - hopefully, they will be sharing conclusions and progress along the way.

New Primer on Pediatric ME/CFS
The wonderful and well-respected Dr. Peter Rowe, of Johns Hopkins, (pediatric ME/CFS and Orthostatic Intolerance expert) has collaborated with Solve ME/CFS Initiative to publish a new Pediatric ME/CFS Primer in an upcoming issue of the journal Frontiers in Pediatrics. The primer was envisioned by the New Jersey ME/CFS Association and written by a team of experts, led by Dr. Rowe. You can read more about the new pediatric primer here and link to one of Dr. Rowe's excellent webinars at the same page. This is fabulous news for the millions of sick kids out there! It should help spread the word to regular pediatricians about the effects of ME/CFS on kids and how to treat it.

ME/CFS Advocacy Week 2017 Was a Huge Success!
This year, in conjunction with ME/CFS Awareness Day on May 13th and ME/CFS Awareness Month in May, the Solve ME/CFS Initiative joined forces with #MEAction, along with over 1,000 volunteer advocates. Their planning and efforts paid off, with these successes:
  • 71 meetings with the offices of Congressional representatives in Washington, DC
  • 8 face-to face meetings directly with members of Congress
  • A Congressional briefing providing information on ME/CFS
  • Over 3.000 messages sent to Congressional representatives by advocates
  • Dozens of local meetings with Congressional offices around the country
  • 6 politicians Tweeted about ME/CFS!
You can read all about the various efforts and their effects here. A big thanks to all of the advocates - patients, families, friends, and more - who helped make all this happen. It seems we are finally getting our message heard and spreading the word about the effects of ME/CFS to those in power.

Excellent Response to NIH Requests for Proposals
The National Institutes of Health (NIH) in the U.S. sent out two requests in January, for two different kinds of research centers. ME/CFS featured prominently in almost a dozen of these proposals, each including a wide range of diverse scientists and medical researchers. Even better, many of the top scientists included in these proposals will be applying their considerable talents to ME/CFS for the first time. This is just what we need, a double whammy: NIH funding for complex ME/CFS projects and an infusion of new talent to complement the wonderful but small group of experts currently dedicated to ME/CFS research. You can read all the details in this update from Solve ME/CFS Initiative, who were involved or assisted with many of the proposals.

Wednesday, June 07, 2017

New ProHealth Article: Travel Tips for the Chronically Ill


My Travel Kit
My latest article has been published at the ProHealth website, just in time for summer: Travel Tips for the Chronically Ill. You can read the full article at that link, and I will reprint it here on the blog next month.

This article pulls together travel tips from our extensive experience: 15+ years of traveling with at least 1 of us (and sometimes 3 of the 4 of us) chronically ill. Through all that time, we have continued to travel: driving and flying to visit family, annual 3-week long trips cross country with our camper, vacation with extended family (those are the toughest), and more recently, my husband and I venturing out on some empty-nest road trips of our own. I've written here on the blog before about our tips for travel, but this article puts all of that experience in one place.

Stuff I bring to help with OI
The article mentions the important of understanding and treating Orthostatic Intolerance (OI), which greatly affects everyone with ME/CFS. You can read more about OI and how to treat it in this post. Treating OI will not only make travel easier for you, it can often dramatically improve all of your symptoms. You can also try other treatments to improve your condition so that you can travel more easily (or at all, if you are currently severely ill) - this post on Effective Treatments for ME/CFS explains about the treatments that have most helped my sons and I to feel better and become more active. Finally, if - like us - you enjoy the outdoors, this blog post includes some of the same tips but focuses specifically on outdoor activities & travel.

My husband and I are planning a week camping in Vermont this month, and we will put all these tips int use!

Do you have any travel plans for the summer?

Tuesday, June 06, 2017

TV Tuesday: Anne with an E

As I posted a few weeks ago on TV Tuesday, the spring shows have all wrapped up now, the summer shows are just starting this week, and so we have been searching for new shows to watch on the streaming services. I was thrilled to hear about the new Netflix series Anne with an E, which is based on the classic children's novel Anne of Green Gables by H.M Montgomery (my review at the link). I just read Anne of Green Gables for the first time two summers ago, as part of my Big Book Summer Challenge, and I absolutely loved it, so I was excited to hear about this new adaptation. It's wonderful so far.

In case you haven't read the novel, Anne Shirley is an orphan who has had a very tough life. She's been mistreated and brought into homes only to act as unpaid labor for housework and childcare. In the first episode, Anne is traveling by train to the town of Avalon, located on Prince Edward Island, to be adopted by an elderly brother and sister, Matthew and Marilla Cuthbert. The problem is that Matthew and Marilla had requested a boy to adopt because they need help with the chores on their farm, Green Gables. Despite the mix-up, Anne herself wins Matthew over quickly at the train station.

Anne is an exuberant, imaginative child brimming with energy and enthusiasm. She has bright red hair (which she detests) and a hard life, but she doesn't let anything get her down. She just plows forward, with a smile on her face, talking a mile a minute. Reticent Matthew, who rarely speaks to anyone except Marilla, is taken aback at first but soon enchanted with this bubbly, kind girl who is so full of life. He brings her home, despite the fact that she isn't the boy they asked for. Of course, this is a problem, and Marilla is more prepared than Matthew to hold the line and get this mistake corrected. The first episode is 90 minutes long and deals with this first very significant conflict in the story. It's no spoiler to say they eventually work things out, since the book is called Anne of Green Gables!

Each episode follows Anne through another new experience filled with potential stumbling blocks: meeting a new friend, passing muster with the judgemental neighbor, and starting at school for the first time in her life. Anne's determination and exuberance often get her into trouble, but there are also conflicts due to her upbringing and background. This small, insular town is not very tolerant of those different than themselves. Some feel sorry for Anne, but many judge her and look down on her. However, for the first time in her short life, Anne has a real family who care about her and a real home.

I have watched 3 episodes so far, including that first 90-miute long one, and am loving the series. Young actress Amybeth McNulty does a fantastic job of bringing the joyful, bursting-with-energy Anne alive on the screen, and Geraldine James and R.H. Thomson similarly seem like the perfect Marilla and Matthew. The casting is excellent, as is the script, some of which I recognize directly from the book. All in all, it's a wonderful production, filled with warmth, humor, and all kinds of issues that are just as important today as they were in the 19th century when this story takes place. It's a great show to watch with your kids, but I am enjoying it fully all on my own, too!

As a Netflix original program, Anne with an E is only available on Netflix.

Sunday, June 04, 2017

Weekly Inspiration: Honesty & Hope, Life & Death

I often feature either quotes from a book I've read or a TED Talk on Weekly Inspiration, as the source of my inspiration and a springboard for discussion. Well, today is special because this post features BOTH a book and a TED Talk - oooh!

Last fall, I read the best-selling memoir When Breath Becomes Air by Paul Kalanithi, a book that got a lot of (well-deserved) attention in 2016. The author, a neurosurgeon, wrote it while he was dying of lung cancer. It is a very open, honest look at his experiences, as well as the bigger subjects of struggles and joy, life and death. You can read my full review of the book at my book blog.

Although Paul had cancer, much of his experience with the sudden shift from wellness to illness struck a chord with me, like in this quote:
"Severe illness wasn't life-altering, it was life-shattering. It felt less like an epiphany - a piercing burst of light, illuminating What Really Matters - and more like someone had just firebombed the path forward. Now I would have to work around it."
          - When Breath Becomes Air by Paul Kalanithi

Yup, that's about it. I think "life-shattering" is a good explanation for how you feel after your diagnosis.

This observation equally moved me and felt perfectly applicable to life with chronic illness:
"Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day.
...If time dilates when one moves at high speeds, does it contract when one barely moves at all?"
           - When Breath Becomes Air by Paul Kalanithi

I'm sure that those of you who are homebound or bedridden can relate to that one. He also writes eloquently about his feelings when attending a medical school reunion at Stanford: "Yet being there merely heightened the surreal contrast of what my life was now" (that's just a short excerpt from a longer, very moving passage). I felt exactly the same way when I attended my 20th high school reunion, shortly after my diagnosis, tongue-tied as to what to say to my former classmates, how to explain the sudden, sharp turn my life had made, and how to reconcile my new limitations against what my peers were doing.

The whole book was excellent - very moving and powerful - and his wife wrote the last chapter, finishing it after his death.

So, I was immediately interested when I saw that Paul's wife, Lucy Kalanithi, had given a TED Talk: What Makes Life Worth Living in the Face of Death. You can watch the brief 16-minute video of her talk here:



I was equally moved by Lucy's talk as I was by Paul's book. As with the book, this isn't a depressing look at death but an insightful consideration of life, while recognizing that death is a natural part of life. Some of the topics Lucy covers in her talk that are very applicable to those of us with chronic illness (or anyone, really), include:
  • Resilience, an absolutely critical characteristic for those of us living with these rollercoaster illnesses.
  • Redefining your definition of success.
  • Honesty - being willing to say the truth out loud (I SO wish my extended family understood this).
  • Joy as a part of life, even in the shadow of death.
  • The importance of hope. I saw this first-hand with my Dad. Although he was diagnosed with Stage IV melanoma, his oncologist gave him hope for what might be possible. I also tried to give him hope, with a book that had helped me tremendously when I first got sick, The Anatomy of Hope by Jerome Groopman. As a result, though my dad was naturally a realist and not one to sugarcoat things, he maintained that sense of hope throughout his year of treatments. I sincerely believe he had a full year with us in part due to his sense of hope. I didn't see him lose that until the very last weeks of his life. It was an incredible gift that his doctor gave to him, as Lucy talks about here. Hope is also very, very important to those of us with chronic illness.
Although both the book and the TED Talk are about death, they are both ultimately uplifting and inspiring in their view of the meaning of life, how suffering is an integral part of life, and how to face your challenges without giving up hope and joy.

I hope you find these as inspiring as I did.

Have you read Paul's book yet? Did you relate to any of the quotes I shared here or anything from Lucy's talk?

Wednesday, May 31, 2017

The Challenges of Being a Sick Parent

On April 6, my article was published on the ProHealth website's Inspiration Corner: The Challenges of Being a Sick Parent. I know that many of you can relate to this topic - trying to be a good parent when you are the one who needs to be taken care of.

I have written about this topic many times here on my blog - you can click on the "parenting" category at the bottom of this post to read older posts like Who Takes Care of Mom? and Taking Care of Me.

For this article, though, I also turned to some experts - other sick parents. I asked for their input on the biggest challenges of being a parent with a chronic illness and also their tips and incorporated those into the article.

I would love to hear more feedback from other sick parents. Take a look at the article below & let me know in the comments:

What are YOUR biggest challenges as a parent? And what are your tips for coping?

The full article is reprinted here:


The Challenges of Being a Sick Parent

Living with chronic illness is a huge challenge, but when you are a parent, there are additional burdens to bear. Parents are supposed to be the caretakers, always putting their children’s needs first. There is a lot of pressure in today’s world to be an involved parent – to go to every school function and sports game, to volunteer for your child’s organizations, to give amazing birthday parties, and more. Plus, most parents love their children unconditionally and want to give them the best of themselves. So, what happens when mom or dad is the one who needs to be taken care of?

Based on my own experiences and those of other sick parents, being a parent with chronic illness brings many difficult challenges. First and foremost are feelings of inadequacy, self-pity, and – the big one – GUILT. You may feel bad about all the things you can’t do with your kids, the plans you had for being an ideal parent before you got sick, your kids having to take care of you instead of the other way around, and even that your kids don’t know the real you, the person you were before you got sick. These feelings of guilt and inadequacy can eat away at you, adding to the physical pain and discomfort you already feel from your illness and even making you sicker.

From a practical point of view, there are the challenges of how to get everything done – around the house, taking care of the kids, and shuttling them to activities. Many of us still have old expectations from our lives before getting sick, of getting everything done, being a perfect parent, and juggling house, kids, work, and more. Not being able to do it all anymore can make us feel even more guilty and helpless. These kinds of negative feelings – piled onto the pain and exhaustion of your illness – can leave you feeling impatient and angry, perhaps even lashing out at your family, which can lead to even more guilt, in an endless cycle.

So, what can you do to break this cycle and be a better parent while sick? Parents in an online support group helped to come up with these coping tips:

Accept the new you and your life as it is today.
To your kids, you’re just Mom or Dad – they accept you as you are and love you. You need to accept yourself as you are now, too. This is your life for now. It’s not how much you can do that matters; it’s how much you love them.

Spend time together.
Maybe you can no longer take them to a museum or water park. Focus on spending time together in a way that you can manage – enjoying a movie or TV show together, reading a book in bed, playing a quiet game – and treasure your time with them. Show them that you enjoy their company. It’s trite but so very true: their childhoods really do go by in a flash, so cherish each day.

Drop the guilt.
No more guilt or self-pity: you are enough, just the way you are. Instead of wallowing in feeling bad about what you can’t do, focus on your kids. What brings them joy & makes them happy? Instead of guilt when you can’t do something, cultivate a Buddhist principle called mudita, finding joy in the joy of others. Share in your family’s joy even when you can’t participate. Have them send you photos, text them while they are out, and experience their joy vicariously. When your child comes home from an outing all excited, give him or her your full attention and share in their enthusiasm, even if you can’t share in their activities.

Take care of yourself.
As parents, our natural inclination is to sacrifice our needs and put our kids first. But the more exhausted and sick you are, the harder it is to be the kind of parent you want to be. So, take care of yourself– physically & emotionally – so that you can be there for your kids when they need you.

Lower your expectations.
Part of accepting yourself as you are now is dropping those old expectations of the ideal parent. It’s OK to get cupcakes from the store for your child’s birthday, not to volunteer at school, and to let the house get messy. It’s even OK to limit your kids to just one activity at a time, as we did – they may be better for it, with downtime to be creative and relax. Focus on spending your limited time and energy with your kids. For events outside the house, concentrate on those that are most important to your child and plan to rest before and after. Let go of the rest.

Get help.
With your partner, family members, and friends, decide how to maintain the house and yard. Don’t be afraid to ask for help – your loved ones want to help you but probably don’t know what you need. Don’t forget to get the kids involved in helping with the chores! Enlist parents of your kids’ friends to help with carpooling. When an event comes up that you can’t attend, invite grandparents or other family members or family friends. Hire help if you can afford it – consider this no longer a luxury but a necessity in your budget.

Looking back at my sons’ childhoods and the young adults they are today, I can tell you first-hand that there are some silver linings to being a parent with a chronic illness. Your kids will grow up with more empathy and compassion than most and will grow into caring adults. Having to help around the house makes them more responsible and independent. If you previously worked outside the home, you will be present more and have more time with your child than most parents do. This can result in closer relationships than most parents and children have, especially as they grow up. In a slower-paced life, your kids will grow up with a greater sense of peace and the ability to find joy in small moments every day. It’s not easy, but you can be a good parent in spite of your illness. Your children may actually be better for it in the long run.