Movie Monday 3/30 - the TV Edition

We didn't watch any movies this past week (nor the week before, since we were away for the weekend for my grandmother's funeral), so I thought I'd do a TV edition of Movie Monday.

Some people think we watch a lot of TV at our house, but as most of you probably understand all too well, it's a nice activity to enjoy with family members when you are too wiped out to do anything else! I pretty much hit the wall by 7 pm each evening, so my husband and I enjoy watching a couple of our favorite TV shows together, before we go up to bed at 9:30 to read. In addition, I usually watch something by myself at lunchtime - it's a nice way to wind down before my nap and give me a chance to watch something that the rest of my male-centric household won't watch with me! Finally, when my college son comes home on Sunday afternoons, he is usually completely worn out from the weekend, so he likes to catch up on some favorite shows with us. Here are some of our current favorites airing at this time of year:

My husband and I have a long list of shows that we enjoy watching together each evening. Some are old favorites, like Grey's Anatomy (my husband has pretty much had enough of it but I still love it and he still watches it with me) and The Good Wife (still as fabulous as ever!). We also enjoy The Blacklist, which just gets better and better, and Perception, a lesser-known series currently in its 3rd season about a schizophrenic neurology professor, played wonderfully by Eric McCormack, who helps the FBI solve cases.

Two of our current favorites are The Americans, about Russian spies living as a regular American family in the 1980's - an amazing show that is better every season! - and Madam Secretary, a new show starring Tea Leoni as the Secretary of State and Tim Daly as her husband, a renowned Religious Studies professor. It has its flaws - sometimes the problems are wrapped up a bit too easily - but Leoni and Daly are both excellent, as is the rest of the cast, and we are enjoying it. And, of course, Mad Men comes back for a final season this week!

On DVD, we have just finished watching the final episode of the final season of Treme, one of the best TV shows ever! It's set in New Orleans (where we used to live) after Hurricane Katrina. The music is just incredible, and the characters now feel like old friends - we were sad to say goodbye to them this weekend. If you've never seen this show, check it out.

It is rare that we can talk our 17-year old son into sitting and watching a TV show with us - he is usually running off to be with his friends or his girlfriend! Mostly, he likes sitcoms, and some of our favorites include Brooklyn 99, The Goldbergs (set in the 80's), Modern Family (best comedy EVER), and our latest discovery, Fresh Off the Boat. He will occasionally watch Bones with us, one of his old favorites. There is just one new drama that he will enthusiastically watch with us: How To Get Away With Murder. Wow, this is a unique, fast-paced legal thriller that will keep you glued to the screen. We all love it.

When our older son comes home on Sundays, he loves to catch up on The Following, The 100, Elementary, or NCIS - New Orleans with my husband and I. He and his Dad watch Vikings while I take my nap - they love it!

Finally, I look forward each day to relaxing over lunch with something the rest of the family won't watch with me! Two of my favorites were Parenthood and Glee, which both recently ended - forever! Like Glee, we all used to watch The Amazing Race together as a family, but everyone else lost interest, so I am watching that on my own now, too - I still enjoy it! Sometimes, I watch The Mysteries of Laura, which is fun, and I've been working my way through season 1 of The Gilmore Girls lately. If I am rushed for time, I like About a Boy or Moms and am enjoying the brand-new sitcom Younger.

How about you? What are your favorite TV shows? I am especially interested in any recommendations for me to watch on my own, now that Parenthood and Glee are both gone. Any girly-type stuff you especially like? I did enjoy the first episode of Outlander, but that was the only free one. We watch TV On Demand or on Amazon Prime or get DVDs from the library. Any recommendations? What are your favorites?

Weekly Inspiration: Celebrate!

I thought I'd pull from my own writings for this week's inspiration post, about our attitude of celebration.

At our house, we have always celebrated both minor and major holidays and events in a big way, but this approach became even more important after the three of us got sick. There is nothing like a little celebration to lift the spirits, whether it's for a major holiday, a minor holiday, or even something totally made up! My essay, Celebrate Everything Big and Small, recently published on the Mamalode website, describes how we add celebrations to our lives as a way to add joy to every day. The essay focuses in on the holidays of this time of year - from New Year's through Easter - but if there are no holidays coming up and we need a pick-me-up, we sometimes have Mexican Fiesta Night or some other made-up event.

This older blog post, The Joy of Celebrations, focuses in even more on adding celebrations to a life of chronic illness. Even if you are severely limited and can't cook, you can still celebrate all occasions in your own way - order take-out, ask a family member or friend to put up some decorations, wear a special color for a holiday, listen to appropriate music (I got a CD of Mexican guitar music from the library for Mexican Fiesta Night!), or maybe watch a holiday-themed movie.

Adding celebration and joy to your life is more a matter of attitude than of doing certain activities, and it is even more important if you have kids who are sick.

Now that our sons are 17 and 20, I can see that growing up with this celebration attitude has paid off. Our 20-year old son lives in an apartment with friends on a local college campus, and he and his friends are always hosting parties with really creative themes: they had a James Bond party last year and a Dark Party this year where the only light came from flashlights. I recently asked our son why there was an old pair of red suspenders in the car (which came from the costume box they used when they were little), and he said nonchalantly, "Oh, I used those for our Old Man Party." That's my boy!

So, the next time you are feeling a bit down or have had a bad day or week or month, plan a mini celebration! It'll lift your spirits and take your mind off your illness for a bit. We could all use a little extra joy in our lives.

My son and his two best friends at their James Bond party

Yeastie Beasties Got Me Again

Just thought I owed you all a quick post to explain why I've been so absent the past few weeks. I haven't even had the time/energy for my usual Weekly Inspiration posts every week.

Yeast overgrowth/thrush/candida got me again. This has become a chronic problem for me (and for my son, also) that keeps flaring up periodically. It seemed to come from nowhere this time, knocking me flat with extreme flu-like aches and exhaustion for over a month. I figured it out sooner this time than with past flare-ups, but it still took me a full month on antifungal prescription medications before I started to feel well, at the end of last week.

Since there was no obvious trigger this time (for instance, I hadn't been on antibiotics recently) and I have been sticking to all my natural yeast overgrowth prevention approaches (strict diet, strong probiotics, and lots of antifungal supplements), I was puzzled as to why this happened now and hit me so hard. Looking back at my records (it's so helpful to keep track!), I saw the following sequence of events:

• July - September - took doxycycline (an antibiotic) for Lyme disease (a new infection that I caught early and was able to get rid of fairly easily this time)
• Early October - got bronchitis and then pneumonia which required two rounds of antibiotics - Zithromax and Cipro
• Severe yeast overgrowth flare-up (is it any wonder why?) starting in mid-September and continuing through to mid-November - it took about a month of antifungal medications to get that under control.
• Early February - yeast overgrowth flares up again, just after Mardi Gras 

So, based on that, I am thinking that I didn't completely get the yeast under control back in the late fall - I stayed on the antifungals just long enough to start feeling better and get rid of the thrush in my mouth, but it is likely that there was still too much yeast down in my GI tract. With that being the case, all it took was a couple of days off my usual strict diet (I did have some King Cake and bread pudding for Mardi Gras!) to trigger another bad flare-up.

So, this time, even though I am feeling better this week, after 4 weeks on alternating Diflucan and Ketoconazole, I am going to stay on the antifungals longer (switching to just Diflucan today) in order to make sure the yeast is really under control and I won't be back in the same crisis in another month. A friend who's a veterinarian also suggested taking a preventive dose of antifungals just one or twice a week long-term - she said it works for the animals she treats with chronic yeast problems. So I will probably try that, too, if my doctor agrees.

If you have never considered yeast overgrowth as a factor in your illness, you should. It is very common in people with ME/CFS, especially those who've been sick longer than 3 years, due to the particular type of immune dysfunction we have. It can make all symptoms worse but especially brain fog, flu-like aches, sore throat, and exhaustion. Here's more information on diagnosing and treating yeast overgrowth.

As for me, I am happy to be feeling like myself again (my ME/CFS self but still)! My baseline these days is actually pretty good, and I am thrilled to be back to taking walks and doing small bits of weight work...and just being able to go to the grocery store or drugstore and get off the couch!

Live Webcast Tomorrow on IOM Report

Announcement from Solve ME/CFS Initiative:

On March 25, the Solve ME/CFS Initiative will host a briefing on the Institute of Medicine report in Washington, D.C. The briefing, which will include media, congressional leaders and executive branch decision-makers, is intended to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.

The briefing will feature three speakers:

- Dr. Ellen Wright Clayton, Chair of the IOM Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Dysautonomia: Postural Orthostatic Tachycardia Syndrome (POTS)
- Morgan Fairchild, Actress, Activist and Patient
- Carol Head, Solve ME/CFS Initiative President/CEO

You can watch the briefing live by registering at this link - you must register ahead of time to get the link to the live webcast. I just signed up - it only took a minute.

I was surprised to see that Morgan Fairchild is an ME/CFS patient - I had no idea!

Here's my summary of the IOM report and announcement from last month.

Celebrate Everything, Big and Small

My essay, Celebrate Everything, Big and Small, is featured today on the website Mamalode for their March Celebration theme.

Although I wrote the essay for a general audience, it does reference our life with chronic illness. The theme of this essay - that you can add joy to every day of life with celebrations of all kinds - is especially relevant to anyone living with chronic illness.

St. Patrick's Day was yesterday, but we still have the First Day of Spring coming up on Friday and Easter just around the corner. We can always find excuses to celebrate!

I hope you enjoy the essay and that is inspires you to celebrate everything, big and small, in your own way and embrace those moments of joy!

Movie Monday 3/16

I continued to battle the yeast demons last week but finally started to feel a bit better on Thursday, after 3 full weeks on antifungals. Not quite out of the woods yet but getting better and slowly returning to my own normal.

We had a mostly quiet weekend here, though we did manage to get out for dinner Saturday night and then got a DVD to watch:

I was very excited to see Before I Go To Sleep at Redbox! We both read the book and loved it (here's my book review), so we've been wanting to see the movie since its (too brief) theater release. Its release was mostly overlooked last year with all the buzz about Gone Girl at the same time, though I much preferred Before I Go To Sleep when I read both books. The movie adaptation was well done.

Nicole Kidman stars as Chris, a 40-year old woman with a type of amnesia where she can only retain 24 hours of memories. Whenever she goes to sleep, her recent memories, before the age of her mid-20's, are wiped clean (this type of amnesia really does exist, as described by Oliver Sacks in his book Musicophilia). So, she wakes up every morning thinking she is in her mid-20's and having no recollection of her husband who is asleep in the bed next to her. Her husband, Ben (played by Colin Firth), has covered the wall of their bathroom with photos of the two of them and their life together and Post-its reminding her of the important details of their lives. Every morning, she wakes up terrified, and he calms her down and patiently explains that he is her husband and that she had an accident and lost her memory. It's a frightening, yet repetitive routine. Every day is pretty much the same until Chris starts seeing a therapist who gives her a camera to make a video journal each night before bed to help her remember things. With the help of the camera and the therapist, Chris begins to remember things, but nothing makes sense to her.

This is an exciting thriller based on a unique premise. The movie does a great job of putting the viewer inside Chris' perspective so that you don't know who to trust or what to believe, and the tension mounts as Chris slowly begins to put some of the pieces together. A few details were different than the book, but the movie sticks pretty closely to it in most respects. We both enjoyed it.

Have you seen any good movies lately?

Movie Monday 3/9

My husband was out of town all last week and then got stranded in Texas for the weekend, too, due to the snowstorm here, so I watched two movies on my own (and also got hooked on The Gilmore Girls!):

I watched Young Adult, starring Charlize Theron as Mavis, a 30-something divorced author of YA novels. Mavis is clearly unhappy with her life, barely going through the motions and spending a lot of time either drunk or hungover and/or sleeping with strangers. When a baby announcement arrives from her high school sweetheart, Buddy, she gets it in her mind that the answer to all her problems lies in simply winning Buddy back. She heads back to her small hometown, intent on reviving their old romance. Since Buddy is now married and has a newborn daughter, things don't quite go as Mavis planned. While basically stalking Buddy, she runs into another former classmate, Matt, who was permanently disabled by some bullies in high school. This movie was billed as a comedy, but I found it pretty depressing. True, Mavis does make a fool of herself going after Buddy and being stuck in her popular girl high school persona when everyone else seems to have moved on, but it all felt more uncomfortable and cringe-worthy to me rather than funny. Supposedly, it's a dark comedy, but it seemed kind of tragic to me. The movie is very well-done, however, with a good script and acting. It just wasn't my cup of tea.

Chef, in contrast, is an uplifting and thoroughly enjoyable movie about food, family, fatherhood, and friendship. Jon Favreau stars as Carl, the accomplished and talented chef of the title, who is stuck under the thumb of an overbearing restaurant owner, played by Dustin Hoffman. John Leguizamo plays Carl's loyal line cook and enthusiastic best friend. Carl's life seems to be falling apart, as his ex-wife, Inez (played by Sofia Vergara), urges him to spend more time with his son, Percy, and leave the restaurant. She wants him to open a food truck, supplied by her first ex-husband, a quirky guy played by Robert Downey, Jr. Fed up and with few options, he finally gives into the food truck idea, and the whole family heads to Miami to pick it up.

The food porn in this movie is amazing! My mouth was watering, and the grilled cheese scene alone just about killed me (I'm dairy intolerant and miss cheese so much!). But this is far more than a movie about food - it is also filled with great music, family drama, humor, and one of the best road trip scenes ever. They drive the food truck cross-country, from Miami to L.A., in scenes filled with mouth-watering food, foot-tapping music, and a lot of fun. The scenes in New Orleans made me home sick. This film is well-written, beautifully produced, and filled to the brim with excellent performances by great actors. All in all, this is a gem of a movie, filled with joy, and I loved every minute of it. It is guaranteed to put a smile on your face, and those amazing cooking scenes inspired me to get back in the kitchen and get more creative this week!

I almost forgot...I actually went to the movie THEATER to see a movie on the big screen last week! My annual movie venture. A friend and I enjoyed a rare evening out, with dinner and a movie. We saw Still Alice, which is based on a wonderful novel by Lisa Genova. Julianne Moore stars as Alice, a 50-year old world-renowned linguistics professor at Columbia University (though in the book she worked at Harvard) who develops early-onset Alzheimer's disease. She is married - Alec Baldwin plays her husband - with two grown daughters and a grown son. To make matters worse, the kind of Alzheimer's she has is genetic, so her children are also at risk. The movie follows Alice from her first inklings that something might be wrong through her diagnosis and her very quick decline. The movie was just as good as the book, and Julianne Moore really earned her Best Actress Oscar. I cried so hard at one point - while Alice is giving a heartfelt speech during her decline at an Alzheimer's convention - that I actually floated my contact lens right out of my eye and had to run to the restroom to get it back in! Although it is heart-breaking, this movie is also about life and love and the strength of the human spirit. Any movie that can make you feel that much is a winner in my book.

Have you seen any good movies lately?

Weekly Inspiration: How To Talk To Yourself

For this week's inspiration, I have turned to someone I often turn to when I need help coping or need inspiration: Toni Bernhard.

Toni is a long-time online friend who also has ME/CFS, but more importantly, she is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and How To Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow, as well as the author of a monthly column on living with chronic illness in Psychology Today. I highly recommend How To Be Sick - it's an inspirational and thought-provoking book that has helped me a lot. I still need to read and review How To Wake Up. I think I could use it about now.

In this month's column in Psychology Today, Toni writes about How to Talk to Yourself. As with all of her writing, it is an insightful essay that I found very helpful. In it, she discusses how positive self-talk can help you to feel better and have compassion for yourself. This is something I really needed to hear today, both because of on-going struggles with a bad crash and also ongoing struggles in an important relationship in my life. I want to write out some of the quotes that she includes in this essay in large letters and post them all over my house!

Two of my favorites:

"The greatest griefs are those we cause ourselves" - Sophocles

"Holding on is believing that there's only a past; letting go is knowing that there is a future." - author Daphne Rose Kingma

I hope you find Toni's words as inspirational as I did today. You can link to some of her other insightful posts at the bottom of the page. And I highly recommend her book, How To Be Sick.

2015 Health-Related Goals

Oh, it's March already? Well, I was a little late this year in setting my annual goals since my son was home crashed all January and now I am even later in posting about it, but you know my motto - better late than never!

Instead of resolutions at the start of a new year, I set goals with measurable objectives. The big goals stay pretty much the same from year to year, but the objectives shift and change depending on how things went the previous year, what I want to accomplish in the new year, and my priorities. I used to set annual goals and then forget about them until December (when I'd be disappointed!), but I find that focusing on measurable objectives and tracking them every week helps to keep me on track - I get more done, I feel better about myself, and by the end of the year, I feel I have made progress. In case you missed it, check out my post on my progress & improvements in 2014 (relevant to my health).

I have 6 big-picture goals that never change:

1. To have strong, fulfilling relationships with family & friends
2. To be a writer, writing what I enjoy, and contributing to my family's income
3. To spend time outdoors with friends & family, doing activities that I enjoy
4. To create and maintain a comfortable, happy, nurturing home environment
5. To be healthy
6. To be financially stable enough to take care of our family and reach our long-term goals

So, in this post, I will focus mainly on my objectives for 2015 for Goal #5, though other objectives also contribute to my health, like spending time outdoors, having healthy relationships, etc.

Some of my 2015 Objectives, specifically related to my health:

• Do 4 fun things for myself each week (I tend to focus on others so this helps me remember to do something for myself, too)
• Get together with friends once a week
• Go outdoors at least 10 minutes a day (helps my state of mind SO much!)
• Go camping at least 2 times in addition to vacations
• Try new treatments (we tried 9 new things last year)
• Walk at least 3 times a week
• Do gentle yoga stretches at least 5 times a week, for at least 5 minutes
• Do muscle strengthening at least 3 times a week (this is usually about 10 min, lying on the floor to keep my heart rate down)
• Meditate at least 10 minutes a day
• No computer after 7 pm
• Rest when symptoms flare (a tough one for me!)
• Take one day "off" per month, with no obligations or to-do's 

I did very well on my health-related goals last year, so I have high hopes to continue improving this year. I'm off to a rough start, dealing with a bad thrush/yeast overgrowth flare-up again right now, but even when I am crashed I can do things to help myself, like meditation and forcing myself to rest!

I know I tend to be very analytical and most people probably don't get this detailed in their goals, but do you have any health-related goals for yourself for this year?

Movie Monday 3/2

I felt pretty awful for much of last week with yet another flare-up of yeast overgrowth, so Friday night was take-out and DVD night!

We got Chinese food and watched Philip Seymour Hoffman's last movie, A Most Wanted Man. I'd heard good things about the movie before (especially in light of it being Hoffman's last work), but I didn't realize it was based on a thriller by John Le Carre. Most of his novels are set in the Cold War, but this story is a more modern one, set in the post-9/11 world. First a little history that I hadn't heard before: apparently, the 9/11 attacks were planned and plotted in the port city of Hamburg, Germany. Ever since then, both German and international intelligence agencies have been keeping a close eye on Muslim communities there, searching for any signs of terrorist activity.

In the film, Hoffman works for a small, secret organization in German intelligence, tasked specifically with ferreting out terrorist activity. His group notices a suspicious looking man at the airport, a half-Chechen, half-Russian Muslim man who is acting nervous and evasive. They watch him and everyone associated with him very closely as he moves around the city. Rachel McAdams plays an idealistic young lawyer who specializes in helping those seeking asylum, and William Dafoe plays a banker she contacts about some money that the mysterious man's father left him. Soon, other agencies are interested in the man, too, including the US State Department (with an embassy employee played by Robin Wright). The big question: is this man just an abused and persecuted person seeking refuge? Or is he a terrorist plotting another bombing? Most parties want to apprehend & imprison him first and ask questions later, but Hoffman and his group would rather watch and wait, hoping he will either lead them to more important people in a terrorist network or that he is perhaps an innocent man.

It's a tense thriller, with plenty of suspense. Like all Le Carre adaptations, it's got plenty of plot twists that keep you guessing and is a little bit complicated to figure out at first, but it soon becomes engrossing. This one keeps you wondering right until the last moments. We both enjoyed it very much.

Coincidentally, I just finished a wonderful, moving novel set in Chechnya that gave me the perfect background for watching this movie: A Constellation of Vital Phenomena by Anthony Marra

Have you seen any good movies lately?

(And if you are also interested in what we are reading this week, check out my Monday update at my book blog.)

Happy Illiversary to Me!

13 years ago today, my life changed forever, though I had no idea at the time. I thought I'd share a bit of how it all started (this is excerpted from an essay of mine):

"How it Began: The Beginning of My Journey with ME/CFS

March 2, 2002, was a typically hectic Saturday. I went to a step class at the YMCA. My husband and I ran errands and worked around the house while our two boys played, and we hosted a dinner party for friends. By evening, I was feeling a bit run-down and had a sore throat. I woke up on Sunday feeling rotten and thought, “I must have the flu.”

It certainly never crossed my mind that I might be sick for the rest of my life. I was a healthy, highly energetic 36-year old and was very content with my life. I’d had a successful and exciting career that I’d left two years previously in order to spend more time with my family. I was married to a wonderful man, had two sweet sons, and was launching a new part-time career in freelance writing.  I felt as though my life just kept getting better and better.

Despite feeling awful that Sunday morning, I insisted we go ahead with our plans for a day trip to Baltimore. We stopped for breakfast on our way out of town and drove the hour south to the city to visit the National Aquarium, Harborplace, and the Science Center. I remember that day in Baltimore clearly, even though I felt like I was isolated in a strange kind of fog all day. I sucked on hard candies nonstop to try to soothe my sore throat which was worse than any I'd had in years. I can remember clinging to the railings at the aquarium, barely able to stay on my feet. I had never felt so sick before in my life.

Everyone gets sick once in a while, especially with small children in the house, so I figured it was a virus. Once back home, I settled onto the couch, let my husband take over much of the household work, and waited to start feeling better. After a week, I did feel mostly better and resumed my normal, active life. We even took a planned trip to my sister’s house in Connecticut to see my newborn niece.

A few days later, I felt horrible again – exhausted, achy all over, sore throat. Could I have caught another virus so soon? What was going on? This didn’t seem like any flu I’d ever had before.

After several weeks with no improvement, I went to see my doctor. He ordered blood tests for the most common culprits: mono, Lyme disease, parvovirus, and a basic blood analysis. The good news came back:  everything looked normal. So why was I still sick?

During that first month, I spoke with my grandparents in Rochester, NY. They were both sick also and had been for a full month. Their doctor told them there was a particularly nasty flu virus going around. I hadn’t had any of the gastro-intestinal symptoms they’d had or a significant fever, but I still figured I must have the same thing. They were beginning to recover, so I stayed on the couch and waited for my recovery to begin.

Journal Entry, 3/21/02:

Beautiful first day of spring, but I didn’t get to enjoy it much.  I had a very rough day and felt pretty depressed.  I burst into tears 3 times today – once over a TV show!  I feel very fragile.

I’ve been sick for 3 weeks now, and I’m getting a little scared.  I’m so sick of feeling tired and achy, so sick of the couch, so sick of not getting anything done!  I want my life back!  I want my normal energy back!  I want to exercise and play with the kids and go to the grocery store and feel productive!

I never imagined as I wrote those words that my “flu” would turn out to be a chronic disease that would change my life. "

© 2015 Suzan Jackson

 I'm sure the rest of that story is familiar to you - a year of blood tests and doctors' visits, eventually a diagnosis, etc. And, here I am, 13 years later.

I am feeling pretty good today (after 10 days on antifungals, finally getting the yeast overgrowth under control again) and in a good frame of mind. At this point, ME/CFS is an integral part of my life. It's hard to even remember life before piles of medication and supplements, afternoon naps, and carefully monitoring my activity level.

I feel like I am in a good place now. Emotionally, I am happy and rarely get depressed any more (though these past few weeks have been a challenge!) Physically, I am doing much better now than I was 5 or 10 years ago and have found quite a few treatments that each help a little bit - those little bits add up to feeling better, being able to be more active, and having an improved quality of life. (Here's a blog post in my most recent improvements).

I still hope for more effective treatments or even a cure, and the research news lately makes me optimistic that there is real hope for all of us (more on that tomorrow!)

So, Happy Illiversary to me! It's not really a reason to celebrate, but it does provide a chance to reflect on how far I've come.