Weekend Inspiration: Celebrate Mardi Gras at Home!

Happy Mardi Gras! And Happy Valentine's Day! There are lots of reasons to celebrate this week. Last week's Inspiration post was all about adding joy to your life by celebrating the small stuff, and this week is the perfect time to do that! And you can celebrate right from home--even from your couch or bed--and add some fun to this dreary winter period. In fact, even in New Orleans, they are celebrating differently this year; the parades have all been cancelled so their nothing-will-stop-us-from-celebrating residents are decorating their own porches like Mardi Gras floats! Check out some awesome "porch float" pictures here.

We used to live in New Orleans, so this is actually a major holiday at out house! This year, we had to cancel our annual party in favor of a small Zoom "Mini Mardi Gras" with a couple of friends last night, and our annual reunion with friends who used to live there with us with Popeye's on Tuesday (Mardi Gras Day) will also be done on Zoom. Nothing will stop us from celebrating, though!

Want to join the fun? Here is a collection of ways to celebrate Mardi Gras, New Orleans, and Louisiana  ... including food, recipes, travel tips, movies & TV shows, and, of course, some great books! You can also check out my column in Shelf Awareness that features books about and set in New Orleans, Armchair Travel: Destination New Orleans.

 

Great Adult Books Set In/About Louisiana (additional titles in my article linked above):

• The Crowning Glory of Calla Lily Ponder by Rebecca Wells, author of Divine Secrets of the Ya-Ya Sisterhood - I listened to Calla Lily's story on audio and laughed out loud & bawled my eyes out! It takes place in southern Louisiana, with plenty of local color.
• Gumbo Tales: Finding My Place at the New Orleans Table by Sara Roahen - I loved this memoir about the food, history, people, and unique culture of New Orleans.
• Trail of Crumbs: Food, Love, and the Search for Home by Kim Sunée - although this food-focused memoir covers everyplace from Sweden to France to Korea, the author grew up in New Orleans, where the food culture impacted the rest of her life.
  

Middle-Grade and Teen/YA Books Set In/About Louisiana:

(Note that middle-grade and YA books are a great option if you have difficulty with longer, more complex books, and these are all great for adults as well as kids and teens.)

• Ruined by Paula Morris - a teen/YA mystery/ghost story set in New Orleans (the perfect setting for a ghost story!)
• The Freedom Maze by Delia Sherman - a compelling middle-grade historical fiction adventure (with a touch of time travel), where a girl from 1960 travels back to 1860 Louisiana
• Zane and the Hurricane by Rodman Philbrick - a middle-grade novel about Hurricane Katrina - powerful and gripping
• Out of the Easy by Ruta Sepetys - most people are familiar with her two YA novels set during WWII (Between Shades of Gray and Salt to the Sea), but this historical novel is set in New Orleans in 1950

Movies & TV Shows

• Chef  - a wonderful, uplifting movie about a family food truck that travels from Miami to LA, with a stop in New Orleans, of course! My favorite movie of the year in 2015.
• NCIS: New Orleans - though it's a crime show, it includes many scenes of New Orleans, mention of local restaurants and landmarks, and other local tidbits. They usually do a Mardi Gras episode around this time of year, so check your cable On Demand, CBS All Access, or Paramount+.
• You can also check out some classic movies and modern classics with New Orleans settings, like A Streetcar Named Desire and The Big Easy.
• The usual livestreams of parades and other scenes in New Orleans are missing this year, but you can still check out www.mardigras.com for some Mardi Gras-themed entertainment!
  

One of the locals in Louisiana

Travel
All this talk of Louisiana making you want to visit? I have written articles about visiting New Orleans  and Exploring Cajun Country - check them out and start planning your trip (plenty of food recommendations in both!). I'm certainly ready to go back!

Crawfish!

 

Eat, Drink, and Be Merry!
Notice that many of the books and movies about Louisiana are focused on FOOD? Yes, Louisiana - and especially New Orleans - is known for its amazing, unique food. This blog post on how to celebrate Mardi Gras includes my own recipes for some classic Louisiana dishes, plus food you can grab locally  --there are plenty of suggestions in this post that you can still manage to do between now and Tuesday! Or save it for later if you like; we eat this food all year round. 

Louisana-made Zapp's chips are amazing!

NOTE that Zapp's potato chips - which you absolutely MUST try) have been bought out by PA-chip maker Utz, so you don't have to get them by mail-order anymore. We can now find them in local stores like Wawa here in Delaware....though we still ordered a carton of assorted flavors for Mardi Gras! (Cajun Crawtator and Cajun Dill are the best.)

My sons and I about 12 years ago

 

 

Lyme Disease News: Testing & Treatment

It's been a while since I've written here about Lyme disease and other tick infections, but they are still seriously affecting our lives every day! I wanted to share some interesting information I've learned recently.

First, in case you're not aware, everyone with ME/CFS, fibro, and similar illnesses should rule out tick infections, as they are very common and share many symptoms with our illnesses. Many of us, including my son and I, have both ME/CFS and tick infections. The urgency is that these infections can cause permanent neurological damage when left untreated, so you want to find out immediately if there are any tick infections behind the scenes. More information on why and how here.

Also, there are no reliable blood tests for Lyme, due to the nature of the Lyme bacteria (it doesn’t stay in the bloodstream) & the fact that many people--especially those with immune disorders like ME/CFS--don’t make the antibodies. Plus, current tests only look for 1 strain of the Lyme bacteria, when hundreds of different ones exist! The one they look for is an East Coast strain, since Lyme was discovered there, though there are many strains, and doesn't include any of the strains common to the West Coast or Europe or anywhere else. The best blood tests (like from Igenex) only catch about 65% of cases. So, if you get a positive blood test result, you definitely have Lyme, but a negative blood test result doesn’t tell you anything. In addition, Lyme is only one of a dozen common tick infections, and most doctors only test for Lyme. The only way to know for sure if you have tick infections (including Lyme) is to see a Lyme specialist or LLMD (Lyme Literate MD) who will run the best tests available but will also look at symptoms, history, and physical exam to determine if tick infections are present and which ones. Any single positive test result for ANY of the tick infections means you were definitely bit by an infected tick, then the doctor can figure out which ones based on his or her experience (that’s why you need to see an LLMD). This link includes information and resources for finding an LLMD near you (they are all over the world).

OK, so onto the News!

Breakthrough in Lyme Testing

 

As I explained above, the best existing tests only catch about 65% (at best) of Lyme disease cases. This has long been a problem, as too many doctors think that a negative test rules out Lyme entirely. Existing blood tests either look for antibodies (like the Western Blot or ELISA test) or look for the DNA of the Lyme bacteria itself (PCR testing). As explained above, there are problems with both approaches. 

 

Now, there is a wholly new testing method developed by Phelix Labs in France that looks for bacteriophages, tiny organisms that live off the Lyme bacteria. There are tens to hundreds times more of these "phages" than of the bacteria itself, and they stay in the bloodstream, unlike the spiral-shaped Lyme spirochete bacteria that burrow into tissues and joints, "hiding." The phages are specific to the type of bacteria and they only hang around for as long as there is an active infection. These are all advantages over existing technologies for either antibody or PCR testing. This excellent article from Health Rising explains more about the new testing method, using the example of a severely ill woman diagnosed with ME/CFS who finally discovered she had Lyme, thanks to this new test (after many negative tests of the older types).

For more information or to order the test, you can contact Phelix Labs in Europe or here in the U.S., R.E.D. Laboratories in Nevada is offering the test. All of the information, forms, ordering instructions, etc. are at that link.

New Treatment for Lyme Disease

 

There is news on the Lyme treatment side of things, as well! For years, the choices have been traditional antibiotic methods (plus other prescriptions, depending on which other tick infections are present) or herbal protocols from a small group of experts (Cowdon, Byron White, and Buhner).

Now, in what Lyme experts are calling a game-changer, an old medication is being used in a new way to effectively treat Lyme disease in many people for whom traditional treatments have not worked. Disulfiram is a prescription medication historically used to treat alcoholism. Research from Stanford University in 2016 showed that disulfiram can be effective in treating "persister" forms of Lyme disease--those that are resistant to traditional treatments, especially in cases of older infections that went undiagnosed for a long time. This excellent article and 12-minute video from Dr. Marty Ross (a well-known expert in Lyme) explains exactly how disulfiram works, who is the best candidate for it, and what the side effects and risks are. He also explains who is a good candidate for the treatment. The article includes data from Dr. Ken Liegner in treating 70 patients with disulfiram, showing that 92.5% improved! That's a stunning statistic for a very hard-to-treat infection. Here is a link to one of the early published scientific studies on disulfiram. 

Confirmation of the Effectiveness of Certain Herbs in Treating Lyme Disease

 

This next bit of "news" isn't all that new for some people, but the study is recent, and I have started this protocol myself. I'm already seeing great results and improvements!

A study from Johns Hopkins compared a bunch of different Lyme treatments, both prescription and herbal, and found that 7 herbs had greater effectiveness at killing off Lyme bacteria than the classic antibiotic treatment most often used, doxycycline. These include:

• Black walnut
• Cat's claw/Samento
• Sweet wormwood
• Mediterranean rockrose
• Chinese skullcap
• Ghanian quinine
• Japanese knotweed

This article provides an easy-to-understand summary of the study, in layman's language, and here is a link to the actual study paper, published in Frontiers of Medicine.

Although some LLMDs have been using some of these herbs for years, getting this clear evidence of effectiveness in a published study is still news because they were proven more effective than the antibiotics usually prescribed, and a published study can be shared with any doctor. Although I was already taking samento, and my herbal combo product (Byron White's A-L Complex) contains black walnut, the rest of these were new to me. I shared it with my LLNP (Lyme literate nurse practitioner), who knew about these. I immediately increased my dose of samento and began taking Japanese knotweed, and I am already greatly improved! As I get used to these and bring the doses up (I have to go up gradually to manage the Herx reaction or temporary worsening), I will add some of the others. I didn't realize that my Lyme wasn't well-controlled until I worsened considerably the past year, and now I have some new tools to hopefully better control it ... and maybe even finally get rid of it? This is the best I have felt in the past year!

So, for anyone struggling to diagnose or treat Lyme disease, these are some new options to consider. And if you have ME/CFS or fibromyalgia and have not considered tick infections yet, you should get evaluated by an LLMD to rule out tick infections. We learned the hard way with our son that the longer they go undiagnosed and untreated, the harder they are to get rid of (we knew he had Lyme but it was 3 1/2 years more before we found out he also had two other tick infections and by then he was very ill). So, find an LLMD, share this new information, and start on the road to improvement!

 

TV Tuesday: Halt and Catch Fire

Looking for something to watch on Netflix? My husband and I just finished the four-season TV show Halt and Catch Fire that originally aired on AMC from 2014-17, and it was excellent. I'd heard years ago that it was really well-done, and we finally got around to watching it and really enjoyed it. 

Halt and Catch Fire is a drama set in the computer industry, covering about ten years from 1983 through the early 90's, from the development of the first IBM clones to the birth of the internet and search engines. If that sounds boring, it's not! The show is really about the people, a small group that started out together in Texas and ended up in California, and the characters are at the heart of the show. Gordon Clark, played by Scoot McNairy, works as an engineer for an electronics company in Texas called Cardiff. His wife, Donna, is played by Kerry Bishé and works for Texas Instruments as a software engineer. They have two little girls and dream of starting their own business together someday. When Joe MacMillan, played by Lee Pace, a tall, confident man, leaves IBM to come to Cardiff, he shakes things up in a big way. He has big dreams of leaving behind his father's company (IBM) to create computer products that can compete with them, insisting that personal computing is the future. Cardiff manager Tom Bosworth, played by Toby Huss, also hires a young, inexperienced but brilliant programmer named Cameron Howe, played by Mackenzie Davis, to round out the team. And they're off! This ragtag team in this Texas company sets out to set the world on fire with the first IBM clone, to break up that company's monopoly on the business, ... and then to develop the world's first portable computer, which seems like a crazy idea at the time. From there, the series follows this core group through about a decade, during which time both the computing world and the people in it change dramatically. There are new ideas, company start-ups, partnerships, and plenty of both wins and losses.

It's hard to accurately describe this excellent show because while the plot is interesting, the people are at the heart of it. The actors are all outstanding in their roles, and their characters have real depth and go through all kinds of highs and lows, both personally and professionally. They are each very flawed, real-feeling people who gradually become a team and need each other. Meanwhile, it's fascinating to peek inside the history (fictionalized) of how we went from hulking single machines on desks to a world where everyone is connected by small devices to the rest of the world instantly. Even the Clark kids, who go from little girls to independent teens during the course of the story, are excellent actors and fully fleshed-out characters. It's a fascinating and engrossing show, and we were sad when we realized we were watching the final episode. Definitely worth your time.

Halt and Catch Fire originally aired on AMC and is now available on Netflix. It is also available for streaming on Amazon, starting at $1.99 an episode or $16.99 for the first season (all seasons available). And it is available on DVD - season one is $11.99 (all seasons are on DVD, but, alas, I don't see any box sets of the entire series).

Weekly Inspiration: Winter Celebrations

Feeling the winter blues? Sick of staying in this time of year with every day the same? Thinking that the shortest month actually feels like the longest?

Good news for you then! This is a great time of year for small celebrations that will brighten your days, add some variety to the sameness, and give you something to look forward to! Plus, with no one able to go out and gather with others, you're not even missing anything.

In my book chapter, Celebrate Everything, Big and Small! (reprinted below), I talk about how celebrating the small, special days can help to bring joy to your life and your everyday routine. And guess what? This time of year that often feels like the winter doldrums is filled with reasons to celebrate! Even if you think you are too sick to celebrate, this post includes lots of ideas for low-key ways to make the upcoming days special.

 

This month is loaded with celebration days! Today is Superbowl Sunday in the U.S. Not into football? Neither am I! But we still use it as an excuse to celebrate (see ideas below). Next week is a big one: Valentine's Day on Sunday, February 14, and Mardi Gras on Tuesday, February 16 (real Mardi Gras goes on for many weeks, so it is perfectly acceptable to celebrate it any time--like the weekend--leading up to Mardi Gras Day). In March, we've got St. Patrick's Day (3/17) and the First Day of Spring (3/20), and then Easter falls on April 4 this year. I've added some fun photos in the chapter reprint below, plus some links above to even more ideas on how to celebrate.

Now, you have some fun to look forward to! How do YOU celebrate special days at your house? 

(Reprinted from Finding a New Normal: Living Your Best Life with Chronic Illness by Suzan L. Jackson - © 2020 Suzan L. Jackson. Click here for more information and to order in different formats.)

 

Celebrate Everything, Big and Small!

 

 

S

ince becoming ill with ME/CFS in 2002, I have been surprised by how life with chronic illness makes me more aware of the small pleasures all around me. Although our lives are often defined by illness-imposed restrictions, we have found ways to add pleasure and meaning to our everyday life, too. One way is to celebrate all kinds of occasions, big and small.

I came by my love of celebration from my mother. When I was a kid, we celebrated everything, and I loved the atmosphere of joy and festivity. My mom was, and still is, a major party animal, so I learned from the best! When I had children, I knew I wanted to do the same thing for them. After chronic illness entered our lives, these celebrations became even more important, a way of injecting fun into our lives, including (especially) on the bad days. Our kids love our celebration traditions, even now that they’re grown!

Of course, we celebrate the big holidays, though we’ve had to scale back since chronic illness hit. We now focus on certain elements of each holiday that are the most important to us. At Christmas, that’s decorating our tree together and getting together with our oldest friends for a cookie-decorating/Grinch-watching party. (To reserve energy for celebrating, we now buy premade cookie dough.)

We also celebrate all kinds of smaller occasions, which can be even more fun and less stressful than celebrating the big holidays. The dead of winter, after the major holiday season is past and before Easter and spring arrive, can be a dark and depressing time. But there are lots of smaller holidays and occasions to celebrate during that time that can add a bit of brightness to an otherwise dreary winter.

 

Ready for Superbowl with our favorite treats!

 

One favorite is Superbowl, the first Sunday in February. We’re not big football fans, and our days of attending big Superbowl parties are long past, but we still get into the spirit of the occasion. Every year, we have our favorite game-day foods—simple things, like tortilla chips with salsa and guacamole, mini hot dogs rolled in crescent rolls, and my husband’s famous Buffalo chicken (pieces of chicken breast sautéed in Buffalo wing sauce). While happily munching on our savory treats, we watch the game and the much-anticipated TV ads.

 

Ready for Mardi Gras with my sons (years ago)!

Mardi Gras (the day before Ash Wednesday) is considered a major holiday at our house because my husband and I used to live in New Orleans. Before I got sick, we had an annual Mardi Gras party that grew to 50 to 60 people at its height! A few years into my illness, we realized that we didn’t have to completely give up our Mardi Gras festivities; we just had to scale back. Now, we invite a few close friends over, buy some traditional New Orleans’ food (like king cake from a local bakery), and make a couple of favorite dishes, like red beans and rice and jambalaya. Friends bring food, too. We play New Orleans’ music, enjoy the food and company, and sometimes watch the real Mardi Gras parades online.

 

Ready for Valentine's Day!

This season also brings Valentine’s Day (February 14), another celebration we enjoy each year. We hang up heart decorations, give each other cards and treats, and indulge in a simple (dairy-free) chocolate fondue for dessert. Similarly, we observe St. Patricks’ Day (March 17), by wearing green, hanging up shamrock decorations, and eating our traditional corned beef and cabbage dinner. It doesn’t matter that we aren’t Irish; we still join in the fun and make it a special day. If you like jokes and pranks, April Fool’s Day (April 1) is a fun one to celebrate. One year, I even celebrated Groundhog Day (February 2) by putting little edible groundhogs made from cookies into my sons’ bowls of oatmeal for breakfast!

 

St. Patrick's Day decorations

You don’t need a holiday on the calendar for an excuse to celebrate. Once or twice a year we have Mexican Night. I make our favorite enchiladas, decorate the table with a colorful serape, and mix up a special orange-mango fizzy drink. We used to celebrate the start of summer by blasting “School’s Out for Summer” as my kids got off the bus and then going with friends to play in a local creek. Of course, there is always a party when we visit their grandma (my mom)!

If you are more severely ill, you may be thinking that you can’t celebrate. Here are small ways to make a day special, with the help of friends or family:

Dress for the holiday, even if it’s just colored or themed pajamas and some whimsical socks or earrings.

Hang up simple decorations near your couch or bed. We have different sets of window clings for each holiday, and I still hang up holiday-themed artwork my sons made in school when they were little.

Listen to music associated with the holiday or special occasion, like Christmas carols, New Orleans’ jazz for Mardi Gras, Irish music for St. Patrick’s Day, and oldies but goodies from your younger years on your birthday.

Watch holiday-themed movies, such as A Christmas Story, Valentine’s Day, Mardi Gras (starring Pat Boone), Ghostbusters (perfect for Halloween!), or Finian’s Rainbow. (A surprising number of results come up when you search for “movies with leprechauns in them.”) Of course, you have to watch Groundhog Day on Groundhog Day—at least twice!

Cuddle with your children or grandchildren (or nieces & nephews), and read holiday-themed books together. If that’s too much for you, let them read to you, listen to audio books, or watch short videos together.

Eat holiday-themed foods—the best part of any celebration! Enlist the help of a friend or family member to prepare the dishes or order in appropriate foods: Chinese take-out on Chinese New Year, corned beef on St. Patrick’s Day, Mexican on Cinco de Mayo.

Watch holiday specials and live events on TV or online, like parades (Thanksgiving, Fourth of July, Mardi Gras), New Year’s Eve at Times Square, the Oscars, It’s the Great Pumpkin, Charlie Brown!, and more. Almost everything is televised or live-streamed now.

Next time you are having a bad day or week or month (or year), find a reason to celebrate and insert some joy into your life!

 

© 2020 Suzan L. Jackson

Movie Monday: Blow the Man Down

I was looking for something on the lighter side (as opposed to a classic thriller) for our Saturday night movie, so we chose the dark comedy Blow the Man Down. I heard about it on Pop Culture Happy Hour, one of my favorite podcasts. It's not laugh-out-loud funny, but it was an amusing story about the dark underbelly of a quiet Maine fishing village.

Mary Beth (played by Morgan Saylor) and Priscilla (played by Sophie Lowe) Connolly, two young adult sisters, have just lost their mother. The three of them lived together and ran the Connolly Fish store in the small Maine coastal town of Easter Cove. The girls are grieving over their mother's death, as the whole town attends the funeral and a reception at the house afterward. While the men of the town work in the water, fishing and lobstering (with sea shanties sung at various points during the movie!), it's a small group of older women who seem to run things. Susie (played by June Squibb), Doreen (played by Marceline Hugot), and Gail (played by Annette O'Toole) walk around town together, keeping an eye on things and watching over the newly orphaned young women. Then there's Enid, played by Margo Martindale, who dresses much too nicely for this cold, remote place and runs the local "Bed and Breakfast" aka brothel, which is a well-known secret in town that is tolerated. The night after the funeral, Mary Beth, who has plans to attend college next year, goes out to the local bar to blow off some steam and ends up in a bad situation with an even badder guy. One thing leads to another, and the guy ends up dead (harpooned) on the docks. She runs home in tears and tells her sister what happened, and the two girls set out to cover up the crime. But there are really no secrets in tiny Easter Cove.

So, clearly, this movie begins with some really dark stuff: death of a beloved mother, violence, and murder. But as the sisters try to cover things up, and the three older woman walk around town and gather at kitchen tables, things turn a bit farcical, though it always keeps that dark edge. It reminded me a bit of a Coen Brothers film. Other than the two police officers (and the dead thug), it's a mostly female cast, and they are outstanding in their roles. The plot gets a bit twisty (but not too complex), as the scared girls try to keep the police (and everyone else) from finding out what happened. Despite its dark themes, it's a fun, original movie that was very entertaining. It has an unheard-of 98% rating on Rotten Tomatoes. Just be prepared to get sea shanties stuck in your head!

Blow the Man Down is an Amazon Original movie, so it is available exclusively on Amazon.

My Progress in 2020 and Goals for 2021

It's time for my annual New Year's post, summarizing some of the progress (or lack of!) I made last year and my new objectives and targets for 2021.

As I explained in my Happy (Almost) New Year post last year, I developed my own process for setting lifetime goals and then specific objectives and targets to move me toward those goals each year, then I adjusted that process after I got sick. You can read all the details (with links to more information) in that earlier post. This is a process that anyone can use - the types of goals, objectives, and targets you have will just naturally reflect your own lifestyle and limitations, while helping you take small steps to do the things you want to do, whether that's improving your health or taking better care of yourself or learning a new hobby or staying in touch with family and friends or ... whatever is important to you! For those of us living with chronic illness, it's all about small steps in the right direction, not overwhelming New Year's resolutions.

So, here's my own summary - you can look back at my post My Progress in 2019 and My Goals in 2020 for details on last year's objectives, but I will try to sum those up here, too.

My Progress in 2020

I have 6 Lifetime Goals that represent what I want my life to look like.

My Lifetime Goals:

1. To nurture and enjoy strong, fulfilling relationships with my husband, my sons, my family, and my friends.
2. To be a writer, writing about topics I enjoy and am interested in and getting paid fairly for my work.
3. To spend time outdoors and to travel, doing activities I enjoy and that rejuvenate me, and sharing those experiences with friends and family.
4. To create and maintain a comfortable and happy home environment - both physically and financially - that contributes to happiness, comfort, and loving relationships.
5. To be as healthy as I can be and to take care of myself so that I can do the things I want to do.
6. To give back, help other people, and be part of a community.

SO THAT, I feel happy and content and can spend my time doing things I love.

Each year, I set (or adjust or keep) objectives and then specific, measurable targets to help me move toward those goals. The process is explained here.

I'll skip the details and just share some of what I achieved (or not) in 2020. 

First, A Word on 2020:

Last year was, of course, an unusual year. For me, though, the pandemic was less of a disruption (mostly normal life for me, staying home a lot) than a sudden and still-unexplained downturn in my health starting in March 2020 that I am still struggling with. If you read my progress summary from 2019, you will see that I was doing quite well physically, managing things I hadn't been able to do in many years, with an almost-elimination of post-exertional crashes (due to a wide range of effective treatments found over the years). With this worsening in 2020, I lost much of that progress (temporarily!) with much-reduced stamina and a return of crashes due to mild exertion and far more bad days than good. At this point today, I'm quite sure a flare-up of my Lyme disease was partly at fault and likely some other sort of infectious trigger, too. I am working with my doctors to better treat my Lyme and to uncover the other infectious culprits.

What I Improved on or Did Well in 2020:

• Successful Book Launch: My biggest accomplishment of 2020 was publishing my book, Finding a New Normal: Living Your Best Life with Chronic Illness, in early February, on a broad range of e-book platforms and with the print book sold on Amazon. 
• Successful Child Launch: Both of our sons moved out on their own in the second half of 2020. Our youngest graduated from college, started a new job, and moved into his own apartment locally. Our oldest, the one with severe health problems, is not yet completely independent, but he moved out of state and took a big step forward, which seemed impossible a year before. Both are happy and well-adjusted adults.
  
• In 2019, I noted that I spent lots of time with my husband, meeting my goals for date nights, walks*, and traveling together. ha ha - I had no idea what was coming! My husband hasn't been to his office since March 2020, and we have been together 24/7 since then. While there has been some friction here and there, I did surpass my goals for time spent together with him and enjoyed most of it! We also got to spend a lot of time with both of our sons.
  
• Updated our will (a biggie we'd procrastinated for years, considering our younger son was still identified as "baby #2" in the old documents).
• Learned some new things about book publishing and promotion that seemed horribly complex to me at first.
• Getting outdoors more often (my goal is daily, even if it's just 10 minutes lying on our deck), which was a big lift for my spirits on all those sick days.
  
• Daily yoga (brief 15 min session, all done on the floor) to help prevent injuries and ease aches.
  
• Helped my 95-year-old father-in-law stay connected (a big challenge last year) with outdoor visits, phone calls, and introducing him to Facetime.
  

Needs Improvement:

• Stay connected to my family and friends.
• Freelance writing (which took a backseat to my book the past two years).
• Create e-mail lists for my blogs.
• Stay off social media in the morning and improve productivity (last year was a bit of a black hole!)
  
• Decluttering and improving our home.
• Getting to the bottom of the 2020 worsening and trying new treatments to get back to where I was.
• Resume travel and camping, as able (we are limited both by the pandemic and also my FIL's needs).
• Get back to regular walking * and light weights * as my condition improves and my stamina returns (already seeing signs of that with new Lyme treatments).
  
• Resting when crashed - a continuing struggle for me, to listen to my body.
• Have more fun! Another one that pops up every year. I need to take more time off and probably reduce my load.

* NOTE:  My exercise is NOT Graded Exercise Therapy (GET), and I am ONLY able to exercise because of several treatments for my ME/CFS that have eased the exercise intolerance somewhat, including treating Orthostatic Intolerance and treating immune dysfunction. I still definitely have limits and use a heart rate monitor to help stay within my limits and prevent post-exertional crashes. Other treatments have helped as well - you can read my full summary of treatments that have been most effective for my son and I, allowing us to live active lives again. 

 

 

My Health in 2020
I am a data junkie, and find it very helpful to track several different aspects of my illness. This helps me to see if I am doing better or worse and also helps me to evaluate whether new treatments are helping. So, in 2020, the data clearly shows that downturn I experienced:

• My average exertion level (on a 1 to 5 scale) was 3.5, down 7% from 2019 (which was my most active year since getting sick in 2002).  This was due entirely to that downturn in my condition in March.
  
• Overall, my "how I felt" average was 2.6 (a 1 to 5 scale where 1 is great and 5 is badly crashed). This is again down 7% from the previous year.
  
• I was crashed (a 4 or a 5 on my scale) 17% of the time. This was a 12% downturn from the previous year and shows more clearly how much worse I was. In 2019, I was only crashed 5% of the time, my best year ever. 2020 was my worst year since 2009 (before I started many of the treatments that helped me to improve so much). Add to this the fact that I had a lot of days last year when I was a "3" - not severely crashed but super-achy and run-down and quite limited in what I could do.
  

How do I know all this? Like I said, I like data! I keep track of how I feel each day on a 1 to 5 scale (1 being great & 5 being badly crashed/bedridden), as well as my exertion levels (also 1 to 5, with 5 being most active). I just jot those numbers on a calendar (see photo above) at the end of each day, along with any unusual symptoms, new treatments, etc. So, I've been tracking these numbers, with monthly and yearly averages, since I first got sick in 2002. I also look at % of time spent crashed (a 4 or 5 on my scale). This data also helps me to tell whether a new treatment is helping. If you're not as analytical as I am (I suspect few people are!), you can just jot down the numbers and notes at the end of each day and use it to see patterns in push-crash, whether a new treatment is helping or not, and other information to help manage your illness day-to-day.

Objectives and Targets for 2020
With my process, my Lifetime Goals mostly stay the same, but my specific objectives and targets may change from year to year (or even month to month).

Many of my objectives and targets do stay the same from year to year, like date nights with my husband (mostly in the house now!), time with my friends, resting when my symptoms flare, etc. My writing objectives for 2021 are quite thorough (a new approach for me), but I won't bore you with all those details. I did get some new inspiration from the book Make Time, which is not about doing more (not all that helpful when you have limited time and energy) but about focusing on the important things. One thing I started years ago was using colored index cards (see the photo at the top of the post) to list a few priorities for each day, to help me stay focused. It forces me to start the day by evaluating what's important, and I can carry the card around with me during the day.

Here, I will just highlight the objectives and targets for 2020 under my Health goal:

1. Try New Treatments & Investigate Downturn - while trying new treatments is an objective every year, this year I am focused on figuring out what made me so much worse last year and getting back to where I was. I've already taken a big step in that direction by seeing my son's Lyme specialist, starting some new treatments for that, and getting dozens and dozens of tests done to look for other infectious culprits behind the scenes.

2. Improve Stamina and Become More Active - (contingent on #1, above, to improve my condition and thus my exercise tolerance). And, only possible because I first treated exercise intolerance.

• Walk at least 4 times a week (some of my "walks" currently are just a slow 10 minutes around our cul-de-sac)
• Increase walk time, as able.
• Continue yoga floor routine, 10-15 minutes per day.
• Try 30-minute yoga once a month (as able - I managed it before I got worse last year).
• Muscle-building, 3x per week, as able (on floor to reduce heart rate) - will have to slowly get back into that routine, as my exercise tolerance improves again.
  

3. Reduce Stress, Improve Rest, and Take Care of Myself -

• Rest when symptoms flare (3 or higher on my scale)
• Do 2 quiet things just for myself each week (no multi-tasking!)
• No computer after 7 pm
• Do 2 fun things each week that are not TV
• Take one "day off" each month

We are each at very different places in our illness journeys, even when we have the same illness, so your goals, objectives, and targets will necessarily be different than mine, but I hope that sharing my goals and progress with you will inspire you to embark on a similar process for yourself. Focusing on baby steps in the right direction helps me to actually achieve my goals, instead of looking back at the end of each year and realizing that nothing changed (which is what I used to do!). Each week, I track how I did versus my objectives and re-adjust for the coming week. And, of course, Listening to My Body is always Objective #1!

Have you set any goals or objectives for yourself for 2021? How was 2020 for you? Please share in the comments below! 

Here's to a happy & healthy 2021 for us all, no matter how you approach it!

Weekly Inspiration: Winter Boosts

It's that time of year again - the cold, dark days of winter (at least for those us us in the northern hemisphere). Short days, less sunshine, fewer times when we can get outdoors (especially for those who can't exercise), and even more isolation. In addition, many people with ME/CFS experience a downturn physically in the winter months (here's one reason why and how to prevent/treat that). 

Taken all together, that can make for some rough days when you are chronically ill. Below, I have collected some great advice from other bloggers (plus a bit from myself) on accepting where you are, finding joy in small moments, coping, and lifting your spirits.

 

From My Book

While all of my book, Finding a New Normal: Living Your Best Life with Chronic Illness, is about emotional coping and improving your life, a couple of the chapters feel extra-relevant this time of year when you're feeling down or gloomy. Here, I will link to those, where I previously reprinted them on the blog.

My chapter, You're Right Where You Need to Be, was inspired by a friend's wonderful memoir. It's all about accepting where you are right now, switching from fighting the situation to giving in (but not giving up), and feeling more at peace with yourself and your current situation. You can read my previous blog post about it and the full text of the chapter at that link.

Once you have accepted where you are now, you can focus your attention on Finding Joy in Every Day. This means living in the present, being grateful, and finding small moments of joy in every day. This change of attitude can make a huge difference in how you feel about your illness, your current situation, and your life.

 

Banishing the Winter Blues

Pippa from The Life of Pippa blog wrote a wonderful post recently on Banishing the Winter Blues: Chronic Illness-Friendly Recommendations. She talks about how typical advice heard in the mainstream media and on social media at this time of year just doesn't work for us, and then she offers three great tips for helping yourself through the winter months.

 

7 Reminders for Those Bad Days to Keep You Going

One of my favorite chronic illness blogs is from Sheryl at A Chronic Voice. Her latest blog post is warm and supportive, like wrapping up in a super-soft, warm blanket. Her 7 Reminders for Those Bad Days to Keep You Going are all kind, gentle lessons that we probably learned at some point but need to be reminded of. Read it now, and bookmark it for the next time you are feeling crummy and having an especially rough day.

 

Loving "Moments" of my Chronic Illness Life

Sam of My Medical Musings blog has a thoughtful post about living her life in moments, that add up to days, weeks, and months. She explains why she feels content with her life, in spite of multiple serious medical conditions and disability. As in my own essay about finding joy in every day, she writes about living in the present and enjoying small moments, even on the worst days.

 

Stressed Out? Can We Manage and Overcome It?

Carole of Navigating the Storms has a helpful new post up, Stressed Out? Can We Manage and Overcome It? Here, she offers some great tips for dealing with stress, whatever its cause, which can be even more challenging for those of us with chronic illness.

 

So, there you have it - a collection of inspiration and wisdom from some of my favorite bloggers. You can enjoy the posts I linked to and also maybe find a new blog or two to follow (in addition to this one, of course!)

How about you? How do YOU deal with the winter doldrums? Please share your own tips and advice in the comments.

TV Tuesday: Home Before Dark

When I finally joined the 21st century and got a smartphone last summer, an iPhone, a free year of Apple TV came with it. I had wanted to see The Morning Show, the Jennifer Aniston/Reese Witherspoon drama (review of that one later), so I accepted the offer. Now, we are exploring additional offerings on Apple TV before our free year runs out. Our favorite so far is Home Before Dark, a classic murder mystery/suspense show ... except that the "detective" is a 9-year-old girl.

Hilde Lisko, played by Brooklynn Prince, isn't too happy about her family's recent move from urban Brooklyn to a small town in Washington state where her Dad grew up. Her father, Matt, played by Jim Sturgess, isn't too happy about it, either, but there are hints that he lost his journalism job over some sort of scandal. He and his wife, Bridget (played by Abby Miller), and their three daughters try to adjust to small town life while getting reacquainted with Matt's dad, played by Reed Birney, who has dementia. Oddly, no one in Matt's home town seems particularly glad to see him again. Hilde wants to be a journalist just like her dad and wrote her own newspaper back in Brooklyn, so she starts up again here in remote Washington. After an unexpected death soon after they arrive, Hilde quickly finds out why her dad is not being welcomed back. Decades earlier, her father's best friend, Richie, was kidnapped and never found. Police arrested a young Native American man named Sam, played by Michael Greyeyes, and convicted him, but Matt--just a child about Hilde's age--testified at the trial that he was not the man in the van who took Richie. Now, Matt is back, with his determined young daughter, this latest death has a link to those old events, and the cold case is again dividing the town. Hilde and her friends bike, scooter, and walk all over town to try to solve both the recent death and the decades-old case, despite pushback from the police who insist the right man is in prison.

This show has all the features of any good mystery/suspense/thriller show with a murder at its center, but the young girl leading the investigation makes it something special. You might think that a little girl investigator would be too cutesy, but young Brooklyn Prince does an outstanding job in the role, with a fierce determination for justice that would put most adult detectives to shame. The story is actually based in truth, on real-life 9-year-old journalist Hilde Lysiak who really did solve a murder in her town. So, it's not as far-fetched as you might think. The other children and the adult actors are also excellent in their roles, as you struggle to figure out who are the good guys and who are the bad guys. The mystery itself is complex and twisty, with plenty of unexpected reveals and red herrings. Best of all, the show has emotional depth and a sense of humor, which we always appreciate, especially in a show that might otherwise be too dark. My husband and I both enjoyed this show very much. We usually juggle 6-8 shows at once, but we kept coming back to this one and were sorry when it ended. Luckily, season one ended with an unexpected twist, so we can't wait for season two!

Home Before Dark is an Apple TV show, so it is available exclusively on that streaming service (which is free for one year for anyone who buys an Apple device).

 

Movie Monday: The Peanut Butter Falcon

In order for me to stay up until midnight on New Year's Eve, I need plenty of diversion, so we watched two movies that night. Though they were both good, one of them, The Peanut Butter Falcon, left us with huge grins on our faces. It would have definitely made my Best of 2020 list, if I had been able to review it sooner, so I guess it will be my first favorite of 2021!

Zak, played by Zack Gottsagen, is a 23-year-old man with Down's Syndrome who is living in a nursing home with the elderly and infirm. It is definitely not where Zak belongs, but he has no family, and this is where he ended up. So, his elderly roommate is more than happy to help him break out one night, greased up to slide through the bars on the window. Now dressed in nothing but his underwear, Zak takes off running. He soon encounters Tyler, played by Shia LeBeouf, who is also on the run for entirely different reasons and has been struggling emotionally since the loss of his brother. The two of them end up teaming up and heading south, through the marshes of the North Carolina coast on land and sea, to follow Zak's dream of becoming a professional wrestler. They are heading to meet the Salt Water Redneck, played by Thomas Haden Church, who is Zak's idol from the very old VHS tapes he has watched hundreds of times. Meanwhile, back at the nursing home, a supervisor named Eleanor, played by Dakota Johnson, is being held responsible for Zak's escape and is sent out to find him. She does catch up with Zak and Tyler, but convincing Zak to return to the quiet home after his exciting life on the road is not going to be easy.

We both loved this original, heartwarming movie about friendship, family, and healing. It's an outstanding cast, including Zachary Gottsagen in his first movie role, and the writing is excellent. We were frequently laughing out loud while watching their carefree, full-of-life journey, but there was also suspense to keep us on our toes. Mostly, though, this film is full of heart, examining the depth of love and what it means to be family. It will leave you with happy tears in your eyes and a huge smile on your face!

Released in 2019 by Roadside Attractions, The Peanut Butter Falcon is currently available on Hulu and on Amazon Prime.

I guarantee this trailer will make you smile!

 

Favorite TV Shows of 2020

It's time for my annual TV wrap-up. 2020 was an unusual year for TV for us, since we usually watch mostly cable shows, but so many of those were interrupted by the pandemic. That led us to explore streaming services more.

Listed down at the bottom of this post are all of the shows that I reviewed here on my blog in 2020. TV shows here include those on network TV, cable, and On Demand, as well as on the major streaming services (and many shows are available on network websites, too). I have also added all of these to my TV Reviews tab on the blog, so you can come back anytime to see ALL of the shows I have ever reviewed here. 

I only review shows I enjoy, so anything listed here or on the TV Reviews tab is worth trying!

Best of TV
First a few superlatives - my favorite shows reviewed last year in each category/genre - always tough choices to make because TV shows are just getting better and better (and more and more!). Some of these I almost made two-way or three-way ties, but I stuck to the rules. Remember that we enjoyed all of the shows reviewed - see the full list at the bottom of the post. Links are to my reviews, including trailers and details on where to find each show.

 Best Comedy
The Good Place (A, C, N, P)

We finally tried it ... and everyone was right!

 

Best Drama

The Queen's Gambit (N)  

My husband's vote is Yellowstone (A, C, P, Paramount) - a close second for me - though he loved Queen's Gambit also.

 

Best Dramedy

 Atypical (N)

Outstanding in every way - can't wait for season 4 in 2021!

 

Crime/Mystery/Thriller/Legal/Action

 Lie to Me (A, IMdB)

(a tough call - lots of good shows - but we like the mysteries plus humor)

 

Best Sci Fi

Russian Doll (N)  

(don't be put off by the sci fi label - hilarious Groundhog Day-like show!)

All TV Shows Reviewed in 2020

So much good TV last year, though it's depressing how many great new shows we enjoyed have already been cancelled! That's the flip side of having so many choices.

KEY: Available on:

A = Amazon Prime

C = Cable and/or Cable On Demand

CBS = CBS All Access

H = Hulu

IMdB

N = Netflix

P = Peacock
S = Showtime

(Offerings from subscription services change all the time, so double-check. Also, some shows are available for an additional fee on Amazon Prime whether you subscribe or not. Most networks offer some episodes of every show for free at their own websites. Click the links below for my review and details on where it is available.)

Comedy

The Good Place (A, C, N, P)

Miracle Workers: Dark Ages (A, C)

 

Drama

All Rise (A, C, CBS)

The Good Fight (A, CBS)

The Queen's Gambit (N)

Quiz (A, C, AMC)

Yellowstone (A, C, P, Paramount)

 

Dramedy (both drama and comedy combined)

Atypical (N)

Dash and Lily (N)

Sex Education (N)

Zoe's Extraordinary Playlist (A, C,  H, P)

 

Crime/Mystery/Thriller/Legal/Action

Better Call Saul (C, N, AMC)

Dublin Murders (A, H, Starz)

Lie to Me (A, IMdB)

Lincoln Rhyme: Hunt for the Bone Collector (cancelled but hoping NBC will put it on Peacock)

The Stranger (N)

 

Sci Fi

Russian Doll (N)

Snowpiercer (A, C, TNT)

Star Trek: Picard (CBS)