Tuesday, September 21, 2021

TV Tuesday: Dickinson

I got a nasty stomach virus last week and spent several days on the couch. I did get some extra reading done, but sometimes, my brain felt like jelly, and I just needed to relax with some bingeable TV. Dickinson turned out to be just the thing! This smart, funny, slightly modernized version of Emily Dickinson's life is still keeping me entertained.

Acclaimed, Oscar-nominated actress Hailee Steinfeld stars as poet Emily Dickinson. As in real life, Emily and her family live in Amherst, MA, and are well-off and prominent in their local community. Her father, played by Toby Huss, is involved in local politics, and her mother, played by the brilliant Jane Krakowski, takes great pride in her role as homemaker, even though they are wealthy enough to afford servants. The family is completed by Emily's brother, Austin (played by Adrian Enscoe), and her younger sister, Lavinia (played by Anna Barishnikov). Austin is dating Emily's best friend, Sue, played by Ella Hunt, to whom Emily is very close (as in real life). Emily lived during the mid-1800's, so the show is set during that period, with appropriate clothing, styles, housing, etc. However, and this is hard to explain, the show adds small elements of modern time here and there in a very fun, effective way. For instance, sometimes a character, in the midst of a period-appropriate conversation will use some bit of modern slang, as when they are all engrossed in Charles Dickens' Bleak House (which was released as a serial) and one says to another, "Hey, no spoilers!" In the midst of a period dance scene, you might suddenly see some modern moves. The soundtrack is sometimes modern as well. The story uses Emily's brief poems as a framework for each episode, showing circumstances that may have led to her penning the lines. Emily struggles against current expectations for women (to marry, for instance), and though her father adores her and encourages her "hobby" of writing poetry, he forbids her to publish, saying it is not proper for a young woman.

I had heard rave reviews of this show, but as is sometimes the case, it took me a while to try it myself. As soon as I did, though, I loved it! When I heard about it, I thought the insertion of bits of modern culture sounded strange, but it works really well and is so much fun! Steinfeld is delightful as Emily, and it's great to root for her to beat back the contemporary ideals of her time and be true to herself. The plot is intriguing, including not only Emily and her family, but the other young people in town and even a potential romantic interest for Emily. Besides the drama, the show is very funny and highly entertaining. I love the creativity of the writers, in fitting the action of the episodes to Emily's brief poems; the episodes often end with her written words flowing across the screen and being recited. Somehow, the show's creators have taken all of these elements, including an outstanding cast, and woven them together into a wonderful, cohesive whole that I am thoroughly enjoying.

Dickinson is an Apple TV show, so it is exclusively available on that platform. I know--another streaming service? But our free year recently expired, and we chose to keep paying ($5 per month) for Apple TV because its shows that we've tried have all been enjoyable and of very high-quality. If you have Apple TV or are considering it, check out my reviews of Home Before Dark, a crime show featuring a 9-year-old girl detective, based on a real-life story, and For All Mankind, an alternate history of the space race where the Russians got to the moon first, changing the history of NASA (and everything else). It's one of the best TV shows we've ever watched. We are also loving Ted Lasso, have just started Truth Be Told, about a true crime podcaster, and just started season 2 of The Morning Show, but I haven't reviewed those yet.

Dickinson has two seasons currently available on Apple TV, with a third on the way!

Sunday, September 19, 2021

Weekly Inspiration: Chronically Jenni Vlogs

As regular readers of the blog know, I started a YouTube channel in February this year, featuring both videos about books and reading and videos about living with chronic illness.

Part of being on YouTube is visiting other people's channels, and I have discovered some other chronic illness YouTubers I enjoy. One of my favorites is Chronically Jenni. She posts a wide variety of videos about living with POTS and EDS, including some great informational videos and some just for fun! But my favorites of her videos are her Weekly Vlogs, where she does a recap of her week, with clips from days throughout the week. What makes her weekly vlogs so great is how open and honest she is; you see the highs and lows, the good days and resulting crashes, and through it all, she is very authentic and honest. I can always relate to her experiences!

Here is her latest Weekly Vlog:

And you can see her full channel on YouTube.

I hope you enjoy Jenni's videos as much as I do!

Friday, September 17, 2021

Free Parent & Caregiver Summit - Monday!

Hi, all! I just wanted to give you a heads up that there is a wonderful free virtual event coming up next week: Parent & Caregiver Summit.

A virtual friend from the Parents' support group I started runs these once or twice a year, and I am excited that she asked me to be a speaker this time! My presentation topic is Caring for Others When You Need Care Yourself, something that many of us can relate to.

And there are LOTS of other speakers, talking on topics relevant to us caregivers: organization, financial needs, cooking, helping disabled kids with school, taking care of your own needs, and more! You can learn more about the summit here (scroll to the bottom for the list of speakers and topics). 

Best of all, the organizer, Moira Cleary, is a busy mom/caregiver of sick kids herself, so she understands your issues and limitations. The virtual event runs for three days, next Monday through Wednesday, but she's set it up so that you can watch the presentations live OR later, whenever you can fit in the ones you're most interested in. It's very flexible. You'll also be able to chat with the speakers and the other participants, just like in a real conference!

I hope to "see you" at the Parent & Caregiver Summit next week! Sign up now--it begins on Monday morning (but again, it's flexible so you can join in whenever convenient).

Thursday, September 16, 2021

Throwback Thursday: School Accommodations for ME/CFS

The following posts about school accommodations are written for kids/teens/young adults with ME/CFS, but they are equally relevant to kids with fibromylagia, Lyme and other tick infections, EDS, POTS, and many other chronic illnesses, especially those that are poorly understood by or unfamiliar to most school staff. Also, these posts reference the U.S. system of 504 Plans and IEPs, but much of the information on types of accommodations and information to help educate school staff is relevant anywhere in the world. These posts mostly cover elementary, middle, and high school (primary and secondary schools), but there is some information on college included, too.

I first published several posts on school accommodations back in 2012, so an update was long overdue! A few people had mentioned that some of the links on those old posts were no longer working, and this is certainly information that parents of sick kids still need today. So, I've completely updated them! 

These are the posts that you might find helpful in getting appropriate school accommodations for your child, teen or young adult:

I hope you find this updated information helpful!

I'd love to hear from you and hear about your experiences. You can click on "Post a Comment" below or connect with me on Twitter or on my Facebook page for this blog. There are wonderful, supportive communities in both places!

Sunday, September 12, 2021

Weekly Inspiration: Our Chronic Illness Story

Things have been quiet here at the blog this week because we moved my 96-year-old father-in-law to Assisted Living this week, and it was kind of a rough transition for him. He needs the help but doesn't always realize it due to dementia. Moving day, Wednesday was a very long day for all of us, and then I spent three hours with him on Thursday, helping him get settled and trying to help the staff understand his needs. 

As for me, I was quite pleased that I managed all of that pretty well! Of course, I was wiped out and achy by Wednesday night (so was my husband!), but I bounced back quickly and felt good on Thursday, which felt pretty miraculous. This was the first week that I really felt back to my "normal" baseline, after an 18-month-long relapse. I finally remembered to take a break from my inosine, an immune modulator. I normally take a break every 2-3 months, and it had been 6 months - oops! Immune modulators only keep working effectively if you take a break once in a while because your immune system gets used to them. So, after two weeks off, I started back on inosine Monday, and like magic, my energy returned, my stamina bounced back, and I felt better than I had in months! Inosine has helped both my son and I tremendously, and you can read more about inosine (and the complex dosing) here.

So, things were going well, and then ... a really nasty stomach virus hit me on Friday! It's rare for me to catch any kind of a virus, and this one hit me really hard. Today, on Sunday, I am finally seeing some improvement. My stomach is settling down, I held down a little breakfast, and my fever broke overnight. But I am still very weak and wiped out today (typing this lying down!).

So, I thought I'd share a video I added to my YouTube channel this week, Our Chronic Illness Story. I thought it might be helpful for those who are newer to my blog or who only know me through YouTube to hear about our family's journey with chronic illnesses, including ME/CFS, Lyme, and other tick infections. Here, I tell our story from the beginning, The Before, to the present, including the ups and downs and our successes and victories. You can watch it here or click the link to watch on YouTube:

Please share your story in the comments or let me know if you have any questions. Time for me to put the laptop down and rest!

Sunday, August 29, 2021

Weekly Inspiration: You're Right Where You Need to Be

Whew, it's been a rough couple of weeks for me. My stamina and energy have just been super-low, with a couple of bad crash days. At the same time, stress and exertion is at an all-time high, as my husband and I work to make arrangements for his 96-year-old father to move to assisted living (he is currently in independent living but needs help every day, so my husband's been running back and forth). The past two weeks were full of facility visits, arranging movers, making doctor's appointments, filling out and scanning dozens of pages of forms, and yesterday, finally telling him and taking him to visit the place we chose (he has dementia, so we didn't want to get him anxious too far ahead of time). This week, he has three doctor's appointments and a nurse's visit, which means driving 20 min to his place, driving to the doctor's, helping him with the visit, driving him home, and finally getting myself back home. Gonna be another tough one!

I think you can see why I chose the topic I did for my video this week! I picked another chapter from my book, You're Right Where You Need to Be. It's all about accepting where you are right now, today, at this moment, listening to your body, living in the present, and understanding that things may change tomorrow. That helpful phrase comes from an inspirational memoir written by a friend of mine, Seven: In the Lane of Hope by Michael Marini.

You can watch the brief video here, and visit my chronic illness video playlist here, or my entire YouTube channel here (which also includes book/reading-related videos).

Watch the video here

Re-reading this chapter really helped me during these difficult recent weeks, and I hope you will find it inspirational and helpful, too!

Is there a word or phrase that helps to remind YOU to rest and listen to your body? Tell me about it in the comments below!

I'd love to hear from you! You can click on "Post a Comment" below or connect with me on Twitter or on my Facebook page for this blog. There are wonderful, supportive communities in both places!

Thursday, August 26, 2021

Throwback Thursday: 13 Years Ago - Lyme Disease, Doctors & Crashes

I thought I'd start a new feature, Throwback Thursday, to take a look back at what I was writing about here on the blog in the past. I've written the blog for more than 14 years now, so that's a LOT of old blog posts that rarely get seen anymore! Looking for an older post today, I also realized that many of the same issues from way back then are still very relevant today and that maybe we can all learn something from occasionally looking back!

So, for today, I chose two posts from this week in August 2008, 13 years ago. These two posts are on the same topic, two parts of the same story, about when I first got Lyme disease.

The first post, from August 13, 2008, is A House of Cards. I use a house of cards analogy to describe how I felt like my life had suddenly crumpled and left me exhausted and in a panic. In this post, I mention how bad I'd been feeling lately, my sudden-onset of knee pain, and a very difficult and painful fight I had with my doctor, about whether or not I now had Lyme disease. I still vividly remember that day because it was so upsetting to me. You can read all about it in that post.

One week later, on August 21, 2008, I wrote Lyme Disease and Allergies, which describes how treating Lyme (which my doctor finally agreed to after that awful fight) finally relieved my symptoms, giving me a miraculous recovery just in time for a camping vacation with my extended family (i.e. lots of energy required!).

August 2008: I was able to enjoy vacation with my family!

Wow, reliving that period 13 years later was interesting and enlightening! And there were some very important lessons in that one-week period so long ago:

Believe in Yourself & Advocate for Yourself - That fight with my doctor when my Lyme tests came back negative but I was certain I had it was a rough one; I was in tears and it still upsets me all these years later. But standing up for myself was the right thing to do. It turned out that I was right, that I did have Lyme disease (and, in fact, am still fighting it 13 years later), and if it had gone untreated for longer, I could have suffered from permanent neurological damage. It can be really hard to advocate for yourself when you have no energy and cognitive function is impaired, so you might need a friend or family member to help you with research and talking to your doctor(s) to represent your rights, needs, and interests. For background as to how I knew I had Lyme and why the lab tests were wrong, check out another post, Why Everyone with ME/CFS or Fibro Should Be Evaluated for Tick Infections. If I hadn't known all this and advocated for myself back then, I would be in much worse shape today, perhaps even bedridden. So, listen to your body, believe in yourself and what you are feeling, and speak up to ask for what you need (and enlist help when needed).

Listen To Your Body! Ah, yes, this is a lesson I keep having to re-learn, even 13 years later! I mention it in both of these older posts, and I just this week recorded a new video about this, You're Right Where You Need To Be. Paying attention to how we feel and resting before we crash is probably #1 in importance when it comes to managing these chronic illnesses, but it is easy to forget in the heat of the moment, when you think you must get something done or don't want to miss out on something. So, a reminder--even from 13 years ago!--is good now and then.

My Lyme Journey It's very interesting to look back at how it all started, when I first added Lyme disease to my diagnoses in 2008, because it's been a long journey with lots of ups and downs. Several times over the next 12 years, I thought I'd finally gotten the Lyme under control and fully treated (spoiler: I was wrong!). Finally, in January this year, I began seeing my son's Lyme specialist and started on some new treatments that have been very effective. I describe all that in my recent post News from Our House: Treatment Progress and More.

Where were YOU 13 years ago?

What lessons have you learned in the past that you seem to have to keep re-learning?

Monday, August 23, 2021

Movie Monday: The Map of Tiny Perfect Things

One evening when my husband had a late online meeting for work, I set out to find just the right "me movie" to watch on my own. I wanted something uplifting and fun but with some depth to it; not just mindless fluff. I found just the right movie for my mindset in The Map of Tiny Perfect Things, a time-loop movie (ala Groundhog Day) with plenty of fun and a lot of heart.

Teen-aged Mark, played by Kyle Allen, has been stuck re-living the same day over and over ... and over. It's not even an especially good day: he doesn't get to see his mom at all, his dad wants to have an uncomfortable talk about his future, and nothing particularly exciting is going on. He takes to walking around town, witnessing the same people doing the same things every day and even gets some pleasure from helping to avert potential disasters that only he sees coming. But he's bored. Then one day at the pool, he notices Margaret, played by Kathryn Newton. He notices her because she's the only person in the entire place that isn't in the same place, doing the exact same thing as every other day. He works up the courage to introduce himself and eventually, to ask her the rather awkward question of whether she is stuck re-living this day, too. She is! Gradually, the two of them team up, the only people in the world who understand what they are each going through. Mark can tell Margaret is hiding some sort of secret because she rushes off at 6 pm every day without telling him where she's going. Otherwise, they really start to bond over their shared experiences and even get some enjoyment out of their situation when Mark comes up with the idea to make a map of "tiny perfect things," little moments of synchronicity they have discovered in this otherwise boring day. But Margaret's secret is coming between them, and they still can't figure out how to get unstuck.

If you've read my blog before, you know that I absolutely love any kind of fictional plot that plays with time: time travel, time shifts, or yes, time loops. So, of course, I loved the premise of this movie right from the start. But there is so much more to it that just the plot. The two main actors--who are really the stars of this show, with others in small parts supporting them--are both excellent in their roles. The writing is good, with plenty of smart, clever dialogue and nothing too trite or expected. The concept of the tiny perfect things is very cool, and it's fun to go along with them on their repeated journeys through town to document these moments. Best of all, though, is that this movie also has emotional depth to it, with some serious issues examined (including what's behind the time loop) and real feeling between the main characters. In short, it has heart and soul. I really enjoyed it; this was just the kind of uplifting and meaningful (but fun!) movie I was looking for.

The Map of Tiny Perfect Things is an Amazon Original movie, so it is available exclusively on Amazon Prime.

Monday, August 16, 2021

Movie Monday: The Nice Guys

During our brief respite this weekend, we enjoyed takeout dinner and a movie at home Saturday night. I was browsing through the available movies on our streaming channels when I spotted The Nice Guys, a movie from a few years ago (OK, five years ago) that I remembered hearing about and wanting to see. It was a very entertaining action/thriller with a great sense of humor, set in the 1970's.

Ryan Gosling stars as Holland March, a private investigator in 1970's Los Angeles, with a little girl, Holly (played by Angourie Rice). He's been hired to find a woman's niece who's named Amelia, played by Margaret Qualley, who it seems is being sought by a lot of different people. Along the way, he runs into (OK, gets beat up by) fellow investigator Jackson Healy, played by Russell Crowe, who's been hired to stop him from looking for Amelia. Instead, the two of them team up because it seems that the mysterious Amelia is in trouble from some very dangerous people. Later, Amelia's mother, played by Kim Basinger, officially hires them to find her. But the story she tells is very different from what others have told them. Who do they believe? The plot gets very twisty, as they race around L.A. amid fancy Hollywood parties, shoot-outs, car chases, and lots of strange people, including a wide variety of criminals. March keeps telling his daughter, Holly, to stay home, but somehow she always ends up in the middle of the action (and danger). To add to their problems, an infamous hit man named John Boy, played by Matt Bomer, has been sent to kill them. 

As you can probably tell from this description, The Nice Guys is an action-packed mystery/thriller, but it is also very funny. The backdrop of '70's fashions, cars, and music makes it all extra-fun, as the two unlucky investigators try to figure out what's going on and who to believe while searching for Amelia. The lead actors are both excellent in their roles; you get a bit of the usual dark brooding from Gosling, but he's not quite as silent in this movie as in some of his others. Crowe's character is a violent-prone but happy guy. Underneath it all, they are both "nice guys" who just want to do the right thing. Rice, as March's daughter, Holly, is an excellent young actress who holds her own among all the big names here. Aside from the recognizable names I mentioned, it's one of those movies so chock-full of talent that we kept pointing to the screen to say, "Oh, look it's that guy! What do we know him from?" Thank goodness for IMDb. There's some serious danger here, but it's all a bit tongue-in-cheek. Bottom line is that it's a fun, entertaining movie for when you don't want anything too somber. Grab the popcorn, sit back, and go along for the ride.

The Nice Guys is currently available on Hulu, with subscription, or for $3.99 rental fee on most streaming channels, including Amazon.

Check out the trailer below, to get an idea of the tone of the movie and the entertaining banter between Gosling and Crowe:

And if you enjoy this kind of entertaining action-packed thriller with a sense of humor, you might also like these movies (reviews and trailers at the links):

  • American Ultra - about a stoner turned secret agent
  • The Lovebirds - date night goes very wrong for this couple in New Orleans
  • Shaft - the 2019 remake starring Samuel L. Jackson
  • A Simple Favor - smart, twisty thriller with a great sense of humor - a favorite!

Sunday, August 15, 2021

Weekly Inspiration: A Much-Needed Respite

When Life Gets to Be Too Much

My husband and I have been unable to travel--or really do much of anything on our own--for almost two years now. Yes, there's the pandemic and my chronic illnesses, but our biggest restriction lately is caring for my 96-year-old father-in-law. He needs help every day, and we weren't going to move him to Assisted Living when they were all locked-down and we wouldn't have been able to see him. We are in the process of finding a place for him now, but for the last 18 months or so, my husband been driving the 20 minutes to his apartment in Independent Living at least once a day and twice on weekends, plus we always spend time with him on weekends. We're happy to do it and glad we can spend time with him, but it is a lot of stress with no downtime, especially as his needs have greatly increased this past year. 

I've tried to schedule some short getaways nearby, within 30 minutes of his place, but it's much too hot for camping right now, and my husband's work schedule's been full, too (we can only go on weekdays when an aide is available to help). 

In addition, with all this time spent caring for him, we don't have enough time or energy to properly take care of our house, our yard, and everything else in life! 


Enjoying a Respite

So, a few weeks ago, with both of us feeling stressed, overwhelmed, and seriously depleted, I declared we were going to have an 18-hour respite

I explained that, from 5 pm Saturday when he got back from his dad's until 11 am Sunday when he'd need to head over there again, we were going to just relax, enjoy ourselves, and not try to accomplish anything or be productive. He brought takeout dinner home, we watched a movie together, spent some time reading, and got up in the morning in the same frame of mind. After a simple breakfast, we treated ourselves to coffee (which I rarely drink) and chocolate croissants (you must try Trader Joe's ones in the freezer - bake them yourself and it's like you're in a fancy coffee shop!), while we watched a couple of episodes of Lakefront Bargain Hunt, our go-to guilty pleasure! We spent time relaxing out on our screened porch, which we normally don't have time to enjoy.

Relaxing on the screened porch

It worked wonderfully and allowed us to recharge, and we did the same this past 18 hours (my husband is out now picking up his dad to bring him here for lunch).

The key here is a change in mental attitude: act like you're on vacation, ignore the to-do lists and piles and mess everywhere, and focus on pleasant, relaxing things. Get takeout or stick with simple meals, with minimal cooking and dishes. Let the laundry, cleaning, phone calls, and bills wait.

It's a simple concept, but it is really helping us! Friday, we were both exhausted, overwhelmed, and feeling depressed. But now, the word respite is like a code word for us that helps us switch to off-duty, fun mode and just relax for a bit; even just an 18-hour break helps! Without this conscious switch, we'd either keep trying to get stuff done (me putting my laptop away is a crucial step!) or feel guilty for all the things we should be doing. Taking a respite allows us to turn off our brains for a bit.

This can also work very well if you have kids at home (whether healthy or sick). They will love the switch to vacation mode and get into the spirit! When our sons were young, and three of the four of us were chronically ill at the same time, we had a tradition (thought up on the spur of the moment one difficult February) of packing up the car for a weekend at the beach in February or March, just when the long winter of viruses, crashes, and missed schoolwork felt like more than we could take anymore. We'd just relax in our hotel room, play cards, eat at our favorite restaurants, take a short walk on the beach (bundled up!), and sit on the floor of the awesome local bookstore, browsing in our favorite sections. It wasn't much (and the beach in the off-season is cheap), but that change in attitude helped us all so much!

My sons and I on a deserted beach, enjoying a getaway!

Even if you can't physically get away, like us right now, you can still give yourself a much-needed respite today, right at home. Try it!


Take a Break!

For more ideas on ways to give yourself a break from routine, even when you can't leave the house, check out my recent video, Take a Break!



Are YOU in need of a respite??

Wednesday, August 04, 2021

Weekly Inspiration: A Plan B Day

One of the chapters in my book, Finding a New Normal: Living Your Best Life with Chronic Illness, in the section on Daily Living, is called "A Plan B Day." It describes a simple premise that really changed my life and allowed me to stop fighting against my illness's whims and listen to my body. I recorded a short video yesterday to explain the concept, with some simple steps to follow for those days when you wake up with plans but a body that is in can't-do mode:


(Or you can watch it on YouTube here, where you can also Like and comment on the video, plus subscribe to my channel for more videos).

And then ... I woke up today with a list of errands I planned to take care of ... and feeling completely wiped out!

As usual, I started out thinking, "but I have to ...," but then I realized I should take my own advice! I thought about each of the stops I planned to make and decided I could put it all off until Friday (Thursday I have a dentist appointment). I went downstairs for breakfast, told my husband it was a Plan B Day (he knows what that means!), and he said he could grab a few urgent items from the store this afternoon. With my Plan B in place, I settled into the couch, with my super-soft comfy blanket, rested all day, and listened to my body. Hey, it really works!

Check out the video and then tell me about YOUR experiences with days when your body just won't cooperate with your plans and if you've tried making a Plan B (or whatever your own process is!).

You can find more information on my book here.

Monday, August 02, 2021

Movie Monday: Find Me

After a difficult, stressful week, my husband and I returned to our pandemic routine and enjoyed a quiet Saturday night at home with take-out and a movie. Since we were both feeling pretty run-down and overwhelmed, I looked for a movie with a positive message and inspiring setting, and I found just the thing. Find Me won several indie film awards but seems to have flown under the radar. Since it has an astounding Rotten Tomatoes' critic review of 100% and included scenes in National Parks (our favorite places), I thought it would be just right for us. We both thoroughly enjoyed this warm, poignant movie with gorgeous settings.

Joe, played by Tom Huang, works as an accountant in a firm in Los Angeles. Since his divorce, he's been pretty much just going through the motions in his life: going to work, checking on his parents, going home to his tiny apartment, and eating the same takeout dinner every night before falling asleep in front of the TV while watching nature shows. The only bright spot in his life is his co-worker, Amelia (played by Sara Amini), who travels all over and comes back to regale Joe with her adventures. Joe comes to life in Amelia's company, and the two of them laugh a lot together and talk constantly throughout their long days at work. Then, one day, Amelia just disappears. She doesn't show up at work, Joe doesn't hear a word from her, and eventually their boss says that she requested a week off, but now it's been more than two weeks. Joe gets a note in the mail from her, postmarked Springdale, UT (if you know your national parks, you know the significance of that address!), with an-almost blank page inside with just two words: "Find Me." Though it is highly out of character for Joe to do anything impulsive, he's worried about Amelia, so he sets up help for his parents, gets in his car, and drives to Utah. From there, Amelia takes Joe on a very cool kind of National Park scavenger hunt, traveling from one amazing natural wonder to another, following her breadcrumbs (in the form of videos on SD drives, hidden like geocaches). He's worried about her, but as he takes this one-of-a-kind journey, he also begins to discover that life still contains plenty of joy and wonder.

Tom Huang is not only the lead actor here, he also wrote and directed the movie, which is quite impressive! We love road trips and National Parks, so this movie was made for us. But it is a unique kind of road trip story, with an underlying story with suspense, joy, and sadness all woven into it. There are some surprises for Joe along the way, and not all of them are pleasant, but the trip and the places he visits open him up to the world around him, just as Amelia has been urging him to do. The settings and the videography are stunning--we wish we could have seen this on a big screen in a theater--and we enjoyed revisiting some of our own favorite places, as well as some we've never been to before. It's not just about the trip and the parks, though; this is also a story about tragedy, connecting with the world, and opening yourself to joy and wonder. There is some sadness here, but the ultimate message of the film is uplifting. The closing scenes provided the perfect ending, in my opinion. We thoroughly enjoyed going on this virtual trip, both physical and emotional, alongside Joe.

We watched Find Me free on IMDb, through Amazon Prime (at the link). It also seems to be available on Tubi and Pluto TV for free, as well as for a fee on many other streaming services.

If you enjoy poignant and moving movies in a beautiful natural setting, I also recommend these (links to my reviews, with trailers - no spoilers):

Leave No Trace, about a complicated father-daughter relationship, set in the dense forests of the Pacific Northwest.

Nomadland - Oscar-winning fictional story of real-life modern nomads, living in vans and campers and traveling to seasonal jobs, with some stunning scenes, especially in Badlands National Park (one of our personal favorites).

Hunt for the Wilderpeople - a warm, hilarious movie about an abandoned teen and a grumpy old man, on the run together in the New Zealand outback. A favorite!

Call of the Wild - a Disney-fied version of the classic novel but still a moving story of a man and a dog saving each other, set against the stunning backdrop of Alaska and the Yukon.

Redwood Highway - a warm, thoughtful film about a grandma who decides to walk the 80 miles to her granddaughter's wedding! Set in the forests and along the coast of Oregon, with stunning natural footage, as she hikes and camps along the way.



Thursday, July 29, 2021

News From Our House: Awards, Vaccines & Treatments

It's been about two months since my last personal update, so I have a lot to share with you, mostly good news!

Award Nominations for Me and this Blog

I have now been nominated for 6 WEGO Health Awards!! I was stunned by this, as the nominations kept rolling in the past few weeks. I've been nominated for one at a time before, in 2003 and 2007, but I've been really touched by this outpouring of support. These are the awards I'm nominated for:

  • Healthcare Collaborator
  • Patient Leader Hero
  • Advocating for Another
  • Best in Show: Blog
  • Best in Show: Twitter
  • Best in Show: YouTube

Wow! I was really surprised by the YouTube nomination, since my YouTube channel is so new (here's my Chronic Illness playlist).

THANK YOU to whoever nominated me for these awards - it means a lot for all my hard work (14 years with the blog now!) to be recognized and appreciated.

Please take a quick moment to endorse me for these awards. Just click this link, click on "Endorse this patient leader" under the list of awards, then you can click on whichever award(s) you think I deserve. The endorsement period ends Saturday, July 31, and I would love to make it to the finals, so thanks for your endorsement(s) ... and any comments are appreciated, too!

COVID Vaccines & Recovery

As of my last update, my son and I had each had our first shots, of the Moderna vaccine, after months of research and preparation. I wrote three blog posts about the vaccines, covering general info, patient experience, and recommended preparation, to share what I'd learned and how we came to decide it was OK for us to get them, which one to choose, and how we prepared.

Since that last update, we are now both fully vaccinated, with both Moderna shots. As is typical for us, we both reacted pretty similarly. After the first shot, we each experienced mainly just a mildly sore arm, though we each had some mild extra on-and-off fatigue during the next couple of weeks, which may or may not have been from the vaccine.

After the second shot, we again reacted pretty much the same, feeling fine for the first 24 hours and then awful for the next 24 hours (pain all over, exhaustion, moderate flu-like symptoms). After that, I thought I'd returned to baseline. In hindsight, though, I realized I was a bit more fatigued than usual for the next week (still functioning but a little more worn out than is typical for me). For about a month after, I noticed that I was fine and at my normal baseline most days but about once or twice a week, I would wake up totally exhausted and need to rest all day. Again, pretty mild reaction compared to some, but it was unusual for me and the timing points to the vaccine as cause. Since about the 1-month mark post-vaccine, I have been pretty much back to my normal baseline.

My son was at the end of that awful 24 hours, 2 days after his second shot, when we made a trip to visit his Lyme specialist and functional medicine practitioner. They are located out in the country, about 45 minutes from here, and my son was still pretty wiped out that morning, not yet quite through his 24 hours of feeling bad. He slept in the backseat on the way there. BUT, while there, he got the IVs he usually gets when he visits them (Myer's cocktail, a mix of vitamins and minerals, and a bag of glutathione). Like magic, he came back to life! By the time we left, he was feeling great, had plenty of energy, and he stayed that way, with no further reaction to the vaccine! I suspect it was mainly the glutathione that did the trick, since it directly affects the immune system and helps with detox. You might try it yourself, both before and after your vaccine. There are lots of ways to increase glutathione, as explained in this blog post. He and I use glutathione nasal spray every day, but his glutathione IV seems to have given him a big extra boost.


Continued Treatments and Improvements 

As I reported in my last update, I've been trying lots of new treatments since the start of the year, including increased treatments for immune dysfunction and for Lyme disease. I am still keeping up with all of those, as described in that last post. The only change since then was coming up to my full dose (30 drops twice a day) of Crypto-Plus for Lyme disease. I didn't experience any Herx reaction at all from this new addition, so I am hoping my Lyme is mostly treated at this point. We'll see what the Lyme specialist has to say at my next appointment and whether there's anything else she wants me to try.

My son and I both decided to continue the liposomal vitamin C that we started as vaccine preparation because it seemed to help us both overall, and it's great for the immune system.

My son continues to make lots of changes to his own regimen, mostly based on the advice of the functional medicine specialist and extensive testing she's done. He has lots of GI issues, but he is hugely better in the past two years, after treating lots of pathogens discovered in his GI tract, treating other issues found through testing, and zeroing in on some food issues (like severe gluten intolerance). In 2019, he had lost 40 pounds, was severely nauseous and vomiting every day, and had a burning pain in his stomach. All of those symptoms have cleared up now, and he's back at a healthy weight.

In fact, our son is really doing well. He has a summer internship, related to his college degree! He's working 20-30 hours each week, usually 6-8 hours at a time. There is some flexibility, with assignments lasting 2-4 days and breaks in between. Sometimes, he doesn't have to be there until 5 pm (which he loves!), but other days, he needs to show up at 7 am ... and he's managing that! This would have been absolutely impossible two years ago. The job has periods of physical activity interspersed with periods of downtime, and he's handling it really well, feeling good, and thrilled to be out in the world working! It's thrilling for all of us, to see him able to take this step forward.


What We're Watching and Reading

We've seen two movies since my last update and both were very good (my reviews plus trailers at the links below). 

We watched Leave No Trace on streaming. It's a quiet but powerful movie, based on the real-life story of a father and daughter living off the grid. It's set in the stunning forests of the Pacific Northwest, so it is gorgeous to watch and also a very moving story. If you prefer quieter movies, without a lot of suspense (there is some mild suspense), this is a great option for you. My husband and I both enjoyed it very much.

And ... drumroll, please! ... we went back to the theater! With me now fully vaccinated, and our area quite safe with very high vaccination rates, we went to the movie theater for the first time since early March 2020! We put our feet up in a lovely recliner theater, shared a bucket of popcorn, and enjoyed watching A Quiet Place II. We loved the first movie, which was completely unique and unlike any other movie, ever. The sequel continues the story of the family in this post-apocalyptic world where making a single sound could get you killed. If you haven't seen it yet, you should! The double-feature is still showing in some theaters (or just the sequel), and both movies are now on streaming, too. We saw a matinee, so there was only one other couple in the entire theater! A good situation for dipping our toes back into movie-going.

As for TV, I posted an overview of TV Shows in Summer 2021. This is a collection of shows on various streaming services, cable, and networks that we are currently enjoying this summer. It includes some returning old favorites of ours, some new favorites, and a few airing in August that we are looking forward to trying. Please take a look and let me know what YOU are watching this summer: we can always use some new ideas!

In my reading world, I am fully immersed in my annual Big Book Summer Reading Challenge, enjoying books and audio books with 400 or more pages and getting through some of the chunksters that have been piling up on my bookcase! You can hear about some of them in my June Reading Wrap-Up on YouTube and hear me gush about my favorites.

I just finished two more Big Books in July that were both outstanding! Blackout (my review at the link) by Connie Willis is a part of her Oxford Time Travel  series and features a bunch of Historians (Oxford grad students) in the near future using time travel technology to travel back to various times and places in World War II England so that they can observe events first-hand, like the Blitz, the evacuation of children to the country, VE Day, and the ordinary citizens who helped to evacuate soldiers from Dunkirk to Dover with their boats. But problems start to occur with the technology, and these time-traveling Historians might not be able to get home. It's a gripping novel, filled with fascinating historical detail ... but be forewarned that it is part 1 of a 2-book series.

The other one I really enjoyed in July was The Air You Breathe by Frances de Ponte Peebles, a historical novel. It's about the intense friendship between two very different women from opposite backgrounds, beginning in 1930's Brazil. Their friendship--and the story--centers around music, and the novel was wonderful, beautifully written, and engrossing. I enjoyed learning more about Brazil and its music.



How have YOU been? And what have YOU been watching and reading lately? Please share your thoughts and recommendations in the comments below!

Wednesday, July 21, 2021

ME/CFS State of the Science: Perfect for Sharing with Doctors!

[NOTE: Please take a moment to endorse me! I've been nominated for 4 WEGO Health Awards.]

In June, two top ME/CFS researchers and doctors, Dr. Ian Lipkin (renowned Infectious Disease researcher) and Dr. Anthony Komaroff (long-time ME/CFS clinician) published an excellent and much-needed article in the the medical journal Trends in Molecular Medicine on Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome. The journal article covers the state of ME/CFS research at this time when "long COVID" (which is often ME/CFS) is rapidly increasing our numbers. It also addresses how the research and science of each condition can help the other.

You can read an excellent, easy-to-understand summary of the journal article, ME/CFS Research: State of the Art, State of the Science, here at the link at ME/CFS Center for Solutions' (at Columbia University) website. That summary article includes a link to the journal article.

This summary article, with the link to more detailed scientific references, is a perfect brief document to print and share with doctors and other medical professionals who either want to know more about ME/CFS or who clearly have misconceptions about the scientific basis for the disease. I've printed copies of both for our functional medicine specialist, a brilliant RN who knew nothing about ME/CFS before my son became her patient but is eager to learn.

Another excellent source of information for doctors that I've mentioned here before is the website for the U.S. ME/CFS Clinician Coalition. This is a group of about 20 of the top ME/CFS experts in the nation who've been treating patients with ME/CFS for years (sometimes, decades). On this website, they have compiled their vast knowledge and experience to help other doctors, with a huge array of resources they either reference or have written. These include official reports on ME/CFS, as well as their own guidance on diagnosing and treating the disease. This does not include debunked "treatments" like CBT and GET but a long list of real medical treatments that they have used for their own patients that any doctor can try.

So, if you have a doctor who doesn't understand ME/CFS, doesn't "believe in" ME/CFS, or is compassionate but thinks there are no treatments available, start sharing some of these excellent resources with him or her today! (And if you're doctor isn't interested in learning, find a new one).

This kind of broad communication of the latest in ME/CFS research is exactly what we need to begin bringing the medical community up to speed on the scientific basis of ME/CFS and how to treat it.

Thursday, July 15, 2021

Nominated for Awards - Please Endorse Me!

Hi, all!

Just a quick stop by the blog to share some wonderful news with you:

I've been nominated in the 10th Annual WEGO Health Awards for a Healthcare Collaborator award! This is in recognition of my 14 years of work in writing this blog, sharing information on social media, starting and participating in support groups, and advocacy efforts.

It's my 3rd nomination for a WEGO Health award in the last 10 years, and I am honored.

Now I need your help to become a finalist!

Just take a moment to endorse me at this link. The website is a bit wonky and not all that clear, but just click on Endorse This Patient Leader, under the award name. A box will pop up saying "Healthcare Collaborator" that looks grayed out, but just click on it to endorse me. Super easy and only takes a few moments.

Thank you for your endorsement ... and for many years of interacting on the blog, on social media, and in real life to help build a supportive patient community for all of us!

UPDATE ON JULY 17: Wow, I have now been nominated for 4 WEGO Health awards:

  • Healthcare Collaborator
  • Patient Leader Hero
  • Best in Show: Blog
  • Advocating for Another
I am honored and very touched by the endorsements and comments left by people. Thank you for your support. If you already endorsed me, thank you and please consider clicking the link again to endorse me for the other 3 awards, and if you haven't visited the WEGO awards yet, please consider endorsing me for whichever awards you like, if you have gained any value from my work on this blog, in groups, on social media, and in advocacy. THANK YOU!!

Monday, July 12, 2021

Movie Monday: A Quiet Place Part II

We celebrated a BIG event last Thursday: we went to see a movie IN A THEATER! Yes! It felt like an extraordinary, thrilling experience. And we chose a great movie to welcome us back to the theater: A Quiet Place Part II, which is perfect for the big screen. First, if you have not yet seen the first movie, A Quiet Place, check out my review at the link. It is a wholly original, genre-busting movie that defies categorization and is outstanding by any measure (and probably not what you think). Here's a quick review, with no spoilers (even if you haven't seen the first movie yet), of the sequel:

A Quiet Place Part II picks up right where the first movie ended, literally moments later, though first, it takes a look back at how all of this began. It starts with Day 1, the day when normal life suddenly shifted to this strange, terrifying, necessarily-silent world. John Krasinski is the dad; his wife, Emily Blunt, is the mom; and they are at their son's (Marcus, played by Noah Jupe) baseball game. It's a typical small-town Saturday scene, with dad bringing oranges for the players and mom encouraging her son through his case of nerves when he's up at bat. Big sister Regan, played by Millicent Simmonds, is deaf and is in the stands, watching her older brother and helping to keep an eye on her younger brother. A local friend, Emmett (played by Cillian Murphy) is sitting next to them, cheering on his own son and joking with Regan and her dad. Then, the world as they know it comes to an abrupt halt, as some sort of fireball falls from the sky and lands nearby. Hysteria ensues, followed quickly by terror, as the townspeople catch the first sight of the gruesome alien creatures. Then, the story jumps to the moments after the first movie ended. The family must leave their home, which has become their safe haven over the past year-plus. That pregnant belly mom was sporting in the first movie is now a young baby, adding to the family's danger, though they have taken extraordinary steps to keep the baby quiet. As in the first movie, it is essential to stay completely silent because these aliens hunt by sound, but they must leave and go in search of a new place to live. They leave with just a pack or two each, carrying the baby in a sound-proofed "cradle" between them, looking for safety. They eventually find Emmett, far from town, though he's not eager to add this potentially noisy group to his own safe place. Danger, excitement, and a quest for a better life ensue.

This sequel was excellent, though a little bit more in the sci fi horror category. The focus is still very much on the family dynamics and their love for each other, but this movie had far more scenes with the aliens and far more jump-scares! At one point I jumped so hard, I hit my elbow against the armrest. The quiet is still an essential feature here, though it is not as quiet a movie as that ground-breaking first one, but the sound design is still very creative and unique here. It still feels dangerous to munch on your popcorn during the quiet scenes! Millicent Simmonds as Regan is still absolutely outstanding in her role, and she has an even larger role in this movie, though Noah Jupe, playing her brother, gets a bigger role here, too, and is excellent. It's a wholly unique story, produced and filmed in an original way, showcasing a family's love for each other in the midst of a terrifying post-apocalyptic situation.

A Quiet Place II is currently available only in theaters, but it will soon be coming to streaming services, Redbox, etc.

Wednesday, July 07, 2021

To All Who Receive My Posts Via E-Mail

I was recently forced to change e-mail list providers because the old one, Feedburner, went away as of July. This means you are seeing some changes if you subscribe to my blog posts by e-mail.

I struggled to find a provider to meet my needs, who can continue to provide the e-mail service you are used to, and I am still struggling to work out some issues. 

I finally settled on follow.it, which is a feed-reader (much like Reddit, I think). Your e-mails from this blog will now show follow.it as the sender - these are not spam but the same e-mail list you've been signed up for in the past (unless you are a new subscriber - then, thanks!). The subject line will say Your Newspaper, 8th of July (or whatever the current date is).

If you have been receiving my blog posts by e-mail and want to continue, your e-mail should have been automatically imported to the new service. However, I am hearing of some issues with that, so a few points to be aware of:

  • If you used to receive my blog posts via e-mail and no longer do, just sign up again, using the box at the top of the sidebar "Get new posts by e-mail."
  • Whether you sign up now as a new subscriber or your e-mail was imported from the old list, you may be asked to confirm you want to stay on the list. I've heard this confirmation e-mail is confusing, and I've reported that to the company. Just be sure to click to confirm you want to stay on the list.
  • When you confirm you want to stay on the list, follow.it will also ask if you want to follow other feeds they host (including other blogs, news, entertainment, health sites, etc.). You do not have to follow any other feeds in order to continue receiving e-mails from this blog. Just click "unfollow" or don't select any new ones.

I apologize for the confusion. Believe me, I share your frustration! I've been wrestling with this issue for over a month now. But I think we are just about there. To summarize:

From now on, your e-mail updates from this blog will show follow.it as the sender.

You MUST confirm you want to stay on the e-mail list when prompted to do so.

You don't have to sign up for any other feeds with follow.it.

If you want to subscribe to this blog, to receive the posts in your e-mail inbox, just sign up using the box at the top of the sidebar "Get new posts by e-mail."

Thanks for your patience - I can't wait for this to all be sorted out and running smoothly!

Tuesday, July 06, 2021

TV Tuesday: Summer Shows 2021

Summer used to be a dead time for TV, with nothing on but reruns while we waited for the new fall TV season. Things have changed, though, and with all the competing streaming services, cable channels, and even the stodgy old networks bringing out new seasons and new shows at all times of the year, there is plenty to watch in the dog days of summer. My husband and I are enjoying a bunch of new seasons from some old favorite TV series, some new-to-us shows, and are looking forward to trying some new shows later this summer, too. (Links below go to my reviews--including trailers--where available.)

Returning Favorites

The good news? Our all-time favorite show is back for some extra end-of-season episodes. The bad news? These will be the last episodes ever. Good Girls, a hilarious, moving, thrilling series on NBC about three moms who get pulled into a life of crime, is back for an extra four episodes, but the powers that be have decided that this fourth season will be its last. This show is so well-done, starring Christina Hendricks, Retta, and Mae Whitman as the title moms and Manny Montana as the hot but dangerous crime boss. We just watched the second-to-last episode last night and can't even begin to imagine how they'll wrap it up when the last episode airs on July 8. 
Another favorite of ours is back for its third season. In the Dark on CW (earlier seasons on Netflix) is another story of regular people getting pulled into hard crime, but in this case, it's a blind woman named Murphy, her best friend, Jess, who's a veterinarian, and their co-worker, Felix. In the first episode, Murphy "witnesses" the murder of a good friend, a teen boy killed by drug dealers. Even though Murphy is blind, she knows enough to help the police and is determined to help bring her friend's killers to justice. But, this is a twisty tale, and between criminals, good cops, crooked cops, and deals gone wrong, the three young people, who all work at Murphy's parents' guide dog charity, soon find themselves into the criminal world way too deep. It's an excellent show, a dark thriller but with a great sense of humor, and we are excited to hear it will be back for a fourth season in 2022.

I finally finished reading the last book in the Mr. Mercedes trilogy by Stephen King (including Mr. Mercedes, Finders Keepers, and End of Watch), so now we can finish watching seasons two and three of the Mr. Mercedes TV show on Peacock. Luckily, someone warned me that the TV show swaps things around, with season two covering book three and season three tackling book two, so I knew to finish the whole trilogy before going past season one. I have made the mistake of starting season two of the show immediately after finishing End of Watch, so I am a little annoyed by all the changes they made: killing off beloved characters, adding entirely new characters, shifting the plot, and even changing the seasonal setting. But, all that said, it is still an excellent TV series and very well-done, a detective/thriller show with some paranormal elements. If Stephen King can accept all these changes to his books, I guess I can, too.
Another show we enjoy based on a book series is Bosch on Amazon Prime, adapted from the huge series of books by Michael Connelly about Detective Harry Bosch. We both love Connelly's novels and the Bosch character, and the TV series is an outstanding adaptation. Each season is generally adapted from a single novel, and the cast is excellent, headed up by Tutus Welliver as Bosch and Jamie Hector as his partner, Jerry Edgar. Lance Reddick co-stars as the Chief of Police. This is a classic police procedural, set in L.A., but of the highest quality. We were very sorry to hear this seventh season is its last, but word is that a spin-off is coming ... hopefully based on Connelly's newest character, Detective Rene Ballard.
For All Mankind is an entirely different kind of show on Apple TV. No crime or thrillers here. It is an alternate history of the U.S. space program, in a world where the Soviets first beat us to the moon in 1969 and then quickly sent the first woman to the moon, completely changing the U.S.'s own progression in the space race. In this world, which includes some real-life members of NASA and historical news excerpts, as well as some fictional characters, the race to the moon is accelerated by the Soviet's accomplishments, women become an integral part of the space program early on, and a base is established on the moon to keep the Soviets (who have their own base) from taking over. We are now watching season two, which takes place in the 80's, after the U.S. moon base has grown tremendously and lithium has been discovered on the moon. Can you imagine the implications? The show is outstanding, suspenseful and thoughtful, with excellent cast and writing. It's a fascinating look at an alternate history and science progression but also a drama about the lives of the astronauts, their families, and the other employees of NASA. Highly recommended.

 Also on Apple TV, another favorite of ours has also returned for a second season: Home Before Dark (not to be confused with In the Dark, above). This is a typical mystery/crime show ... except that the detective is a nine-year-old girl! Hilde's family recently moved from Brooklyn to a tiny Northwest coastal town where her dad grew up. Hilde wants to be a journalist, just like her father, and already writes and publishes her own local paper. In season one, she somehow managed to solve a decades-old cold case involving a missing child who was one of her dad's best friends. In season two, she is investigating an environmental mystery. This is one of our favorite shows--it is smart and funny and totally engrossing, and we can't wait for each new episode to be released on Fridays.

To lighten things up from all these mysteries and thrillers, we are enjoying the newly released season five of The Good Fight, a spin-off of The Good Wife. Starring Christine Baranski and Audra McDonald, the show features a Chicago law firm that can't decide if it wants to be an all-Black firm or an all-woman firm (that's a big source of tension in this latest season). It is ripped-from-the-headlines , with this season set right now, past the worst of the pandemic and in the current political climate. There are legal cases in every episode and political references, but also a great sense of humor. Like I said, it;s a fun counter to some of the darker thrillers we watch.



New Shows We Might Try

There are several new shows slotted to start in August that we plan to try.

A reboot of Fantasy Island is set to premier on Fox on August 10. I heard about this show because I listen to a podcast, Happier in Hollywood, hosted by the two TV writers and show runners involved in the project, Liz Craft and Sarah Fain. After listening to how much fun they had filming the show in Puerto Rico this spring, I decided to give it a try. The trailer looks enticing:

And there's a new Sandra Oh TV series, The Chair, coming to Netflix on August 20! We loved her in Grey's Anatomy and on Killing Eve. Here, she stars as the Chair of a university English department. The trailer doesn't tell you much, though it hints at a good sense of humor ... and it's Sandra Oh! Definitely worth trying:

Coming to Hulu on August 31 is a new series, Only Murders in the Building, about three neighbors who investigate a murder in their apartment building. Get this: the three lead actors are Steve Martin (who created the show), Selena Gomez, and Martin Short! And I caught a glimpse of Nathan Lane in the trailer, too. Talk about comedy royalty! I can't wait to try this one:

How about you? What are you watching this summer? Any new shows coming that you want to see? We're always open to new suggestions!