Interview on ME/CFS, OI, and long-COVID on Podcast

A couple of weeks ago, I had the great pleasure of being interviewed by Dr. Tony of the Crooked Spine podcast. He was fascinated by my family's story and asked me all about ME/CFS (myalgic encephalomyelitis, chronic fatigue syndrome), orthostatic intolerance (including POTS), and Lyme disease and other tick infections. We also talked about the challenges of living with any kind of chronic illness and ways to cope.

The video is now available on YouTube. You can watch it here on my channel at the link. And I will also imbed the video below so you can watch it right here, if you prefer:

This was a great opportunity to help get the word out about ME/CFS and long-COVID, as well as the OI that accompanies it and the additional challenge of tick infections.

I hope you enjoy it. You can leave comments on YouTube below the video or here on the blog. 

Let me know what you think and if you have any questions.

TV Tuesday: The Bear

One of our favorite TV shows this summer has been The Bear, a unique, engrossing show about a professional chef trying to save his family's dive restaurant.

Carmen Berzatto (Carmy or Bear to his friends and family) is played by Jeremy Allen White, a wonderful actor best known for his long-running role as Lip on Shameless. Carmy has come home to Chicago after his brother Michael's death by suicide. Michael left the family's grimy beef sandwich restaurant to Carmy, who trained as a professional chef at the Culinary Institute of America and has worked in what's considered the best restaurant in the nation. Carmy was even recognized as one of the top young chefs in the country. His family's run-down sandwich shop is a big step down for him and is failing financially. Filled with grief, Carmy is determined to turn things around and make it a success. Most of the employees have worked for Michael for years and are devoted to the restaurant but have no professional training. Tina, played by Liza Colon-Zayas, is a smart-alecky woman who doesn't like being told what to do by this new guy intent on changing things. In contrast, Marcus, played by Lionel Boyce, who normally just bakes the rolls for the sandwich shop, is excited to have his role expanded and has dreams of baking some of the magnificent desserts he's seen in books and magazines. Richie, played by Ebon Moss-Bachrach, is an obnoxious, loudmouth who is always yelling, but he grew up with Michael and Carmy and is a part of the business. Carmy brings in one new person, Sydney, played by Ayo Edebiri, an ambitious young sous chef who has big ideas and is willing to work in this dive restaurant just for the honor of working under the great Carmine Berzatto. In just eight episodes, this ragtag crew argues and fights to try to keep the restaurant afloat, with plenty of conflict between Carmy's professional chef methods and the way things have always been done. Carmy almost destroys himself with his long hours, grief, and the stress of trying to save the restaurant. Somehow, things begin to come together and improve, but this determined group encounters one challenge after another, from overflowing toilets to kitchen fires to a rowdy bachelor party.

I've been trying to figure out what makes this show so special and engaging. Certainly, part of the equation is Jeremy Allen White, but the other cast members are just as important (and talented). It's an ensemble show with a lot of emotional depth about trying to achieve what seems an insurmountable goal against horrible odds. We were rooting for these flawed people every step of the way (even Richie once we better understood him). There is suspense in whether or not they can keep the restaurant going and whether they can improve it without going bankrupt, and there are plenty of surprises and secrets left behind by Michael (mostly bad ones). It's an underdog story with a lot of heart, and we loved every moment of it. We hope there will be a second season!

The Bear, an eight episode season, aired on FX and is also available on Hulu. Just watching the trailer gives me chills and makes me want to watch the show all over again!

Chronic Illness Vlog - July

Hi, all! Life has been hectic recently, but I wanted to let you know that I tried something new for my YouTube channel. I was inspired by Pippa Stacey of the Life of Pippa channel, who always makes wonderful live vlog videos. She has chronic illnesses and creates these fun, honest vlogs, with video clips from her real life. I always enjoy her videos, so I decided to try it myself!

My first attempt is my Chronic Illness Vlog - July. It was meant to cover one week, like most of Pippa's do, but, well ... life got complicated, as you will see! This vlog includes short video clips of my real life, including good days, bad days, and everything in between. You can watch it here or click the link to watch on YouTube:

I would love to hear what you think of this kind of vlog format. Most of my other chronic illness videos have been more informative types, focused on aspects of chronic illness or coping tips.

So, check it out and let me know your thoughts! Would you like to see more vlogs? Are there other informative topics you'd like for me to cover on video? 

Leave a comment here or below the video on YouTube. You can also connect with me on Twitter or on this blog's Facebook page.

Movie Monday: The Power of the Dog

A couple of weeks ago, my husband and I decided to watch a movie on Saturday night. We've gotten so caught up in following all the great TV shows available on cable and streaming now that we rarely watch movies anymore. That means we are way behind on watching all the award nominees. We chose The Power of the Dog which had been nominated for a Best Picture Oscar in 2022, as well as eleven other Academy Awards! This gorgeous Western was not exactly what we expected, but it was an excellent movie.

Benedict Cumberbatch plays Phil Burbank (and was nominated for a lead actor Oscar for his role), a hard but charismatic rancher in 1925 Montana. He and his brother own the ranch left to them by their father, but it's clear that George, played by Jesse Plemons, is more the businessman, and Phil is the hardcore rancher. He inspires awe and fear in those around him. While on a cattle drive, Phil and George and their men stay at a boarding house/restaurant run by the widowed Rose Gordon (played by Kirsten Dunst, also nominated), who lives there with her teen son, Peter (played by Kodi Smit-McPhee). George falls for Rose, and they are soon married. Rose drops Peter off at school, where he will study to become a surgeon, and then heads off with George on a multi-day trek across a bare but beautiful landscape to the isolated ranch. There, George and Rose are happy at first, but Phil seems determined to torture Rose. George is often away on business for a week or two at a time, and during those times especially, Phil is relentless in making Rose feel like an unwelcome intruder, driving her to turn to alcohol. When Peter visits during his summer break, he can immediately see the frail emotional state his mother is in and that she's been drinking. In an unexpected move, though, Phil stops mocking the boy for being effeminate and instead takes him under his wing, teaching him to ride and rope. With all the different tensions just below the surface, it's unclear what will happen next.

There are plenty of secrets lurking behind the characters here, and some plot twists that took us by surprise. The growing tension on the ranch creates plenty of suspense. It just feels like something will eventually have to give in this unequal battle of wills. The stunning landscape and gorgeous cinematography add a lot to this film (it was also Oscar-nominated for Best Cinematography, and it's clear why). It's easy to get lulled by the atmosphere and harsh beauty of the ranch so that you don't see the surprises coming. This is a dark movie with a lot of emotional complexity. It was different than what either of us expected, but it was very good, and it's obvious why it got so many award nominations.

Have you seen any of this year's Best Picture nominees yet? This was only our second!

The Power of the Dog is currently available on Netflix.

Movie Monday: Where the Crawdads Sing

I had the honor of reading Where the Crawdads Sing by Delia Owens before the book was released, writing a review, and also interviewing the author for Shelf Awareness (both interview and review at the link). I fell in love with the main character, Kya, and the gorgeous natural setting in the North Carolina marshes, so I was excited to see the story brought to life on the big screen. On my birthday Saturday, my husband and I treated ourselves to a morning matinee (no crowds!), our first time back in the theater in over a year. And, this wonderful adaptation did not disappoint.

As the movie opens, a young man named Chase, played by Harris Dickinson, has been found dead at the bottom of a metal observation tower in the North Carolina coastal marshes. The local police's investigation points to murder, and they quickly zero in on one suspect, a local woman named Kya (played by Daisy Edgar-Jones), who they immediately arrest. Kya lives a solitary life out in the marshes by herself. She is generally shunned by the townspeople, who call her "marsh girl," and treated badly, so when arrested, Kya doesn't speak to the police or try to defend herself. A retired lawyer in town, played by David Straithairn, is sympathetic to Kya and offers his help. Kya finally opens up to him and begins to tell him her story. When Kya was six years old, her mother abruptly left Kya and her siblings with their abusive father, having been beaten for the last time. As soon as they are old enough, her older siblings leave the homestead in the marsh, until Kya is left alone with her alcoholic father. Finally, he takes off, too, leaving Kya alone at just ten years old. She does her best to survive on her own, living off the land and earning some money by digging up mussels to sell to the local general store/bait shop, owned by Jumpin', played by Sterling Macer, Jr., and his wife, Mabel, played by Michael Hyatt, who are the only people in town who treat Kya kindly and recognize the peril of her situation. Kya makes a friend in Tate, played by Taylor John Smith, a boy who was friends with her brother and who also lives in the marshes. Eventually, as a young woman, she meets Chase. The action moves back and forth between flashbacks to Kya's early life and the present-day court case where she's being tried for murder. 

Like the novel, this movie is a murder mystery, courtroom drama, family drama, coming-of-age story, and love story, all set against the beautiful backdrop of coastal North Carolina. Nature plays a huge role in the overall story and especially in Kya's life, as for a long time, her only companions are the birds, insects, and other critters who live in the marshes and swamps. She collects all kinds of specimens, from shells to feathers and is quite talented at drawing everything she sees around her (her mother was a painter). Kya's coming-of-age story is beautiful and innocent, especially when contrasted with her present-day trial for murder. There is plenty of suspense right from the opening scenes about how Chase died and whether Kya did kill him, as the trial continues. 

We thought the casting was excellent, including not only Edgar-Jones but all supporting roles, too. I was glad we were able to see this movie on the big screen (recliner theater!), as the cinematography of the natural setting is absolutely stunning, with gorgeous views of the coastal marshes. The film also recreates a typical southern small town in the 1950's in a convincing way, though there's been some criticism that the Jumpin' and Mabel characters are racially stereotyped (the "kindly Black folk"). To my mind, they could relate to the way that Kya was being ostracized, in a way that the white residents didn't. I thought the movie stayed pretty close to the story in the book, though I read the novel back in 2018 (I think that's the best way to watch an adaptation, after a little time has passed). My husband has never read the book, but we both enjoyed the movie very much.

[Please note that I am well aware of the controversy now surrounding Owens, but since she herself was not under suspicion and the accusations against her family were never resolved, I chose to watch and enjoy the film on its own merits.]

Where the Crawdads Sing is currently showing in theaters and was released on July 15. The movie will eventually come to Netflix but not for about five months.

News from Our House: ME/CFS, GI Problems, and Diet

Did you miss me? For once, it wasn't my ME/CFS or Lyme that kept me from posting on my blog or making new videos!

We had to take an unexpected cross-country trip. My father-in-law passed away at 97 years old the first week of July. He had severe dementia and had lived a long life, so it was time. He wanted to be buried next to his wife, where he'd lived most of his life, in Oklahoma. So, my husband and I headed out on a long road trip. There was no way I was going to fly on a packed airplane with no one wearing masks and delays and cancellations rampant!

We drove four days to get there, staying in hotels along the way because it was much too hot to bring our camper (105 in Oklahoma!). The funeral service was lovely, with friends and family coming from near and far and lots of personal stories and memories. And then, we drove (well, my husband drove) another four days back. Other than some back pain from sitting in one position for too long, I do well on long car rides--it keeps me off my feet and forces me to do nothing! But we were both very glad to get back to our own bed and the couch and recliners!

No time for sightseeing but we passed by the Gateway Arch!

 

ME/CFS, GI Problems, and Dietary Changes 

Since my ME/CFS first started in 2002, GI problems had not been a big issue for me. The mild digestive symptoms I did have were completely eradicated when I discovered I'd become intolerant to dairy and began avoiding it. A full 30% of those with ME/CFS are dairy intolerant, according to one study, so definitely test that out if you have any GI symptoms.

But in September 2021, for no discernible reason, I suddenly developed chronic diarrhea. With the help of both my Lyme specialist and a functional medicine specialist, things have improved in recent months, mostly thanks to loads of probiotics--very specific ones, based on stool testing to show what I had too much of and not enough of (note that the testing did not show any pathogens). But I am still reliant on very high dose probiotics and still don't have an answer as to why these problems suddenly began last fall.

Food Sensitivity Testing

Before we left, at the end of June, I received the results of Food Sensitivity Testing (from Alletess). This is IgG testing, measuring the immune response to various foods. My Lyme specialist recommended it, and I didn't expect to learn anything surprising. After all, I already knew I was intolerant to dairy, and nothing else seemed to upset my stomach.

So, what a surprise it was to look at my results and see more than a dozen food ingredients show up as mild to moderate sensitivity, including:

Moderate

• Cashews
• Pistachios
• Sesame

Mild

• Macadamia nuts
• Poppy seeds
• Grapes
• Pineapple
• Watermelon
• Black-eyed peas
• Chickpeas
• Green peas
• Peanut
• Soybean
• Casein
• Whey
• Cow's Milk (no surprise)
• Egg white
• Oregano 
• Peppermint
• Rosemary

There are a few others, but these are the main ones that I eat most often. I was eating eggs every day, drinking peppermint tea every evening, and even taking capsules of oregano and rosemary every single day ... for years! We often cook Asian-style meals with plenty of soy sauce and sesame oil. I used whey powder in my daily smoothies for lunch. And guess which nuts I most often eat, as part of my mostly-Paleo diet? Yup, cashews, pistachios, macadamias, and peanuts (not a nut, I know). In fact, since I knew I couldn't have dairy, I was eating dairy substitutes like cashew milk, cashew sour cream, and cashew feta cheese (all excellent, by the way), plus eating plain cashews and cashew butter daily!

I discussed the results with my Lyme specialist while in the car on the way to Oklahoma, and she explained some things. She said eating a food constantly (like eggs, peppermint, or cashews) could make me more sensitive to it. Also, since most of my test results showed only mild sensitivity, I could probably tolerate them once in a while, if I avoided them most of the time. She said the key was lots of variety and not eating the same thing every day ... which I had been doing!

Dietary Changes

So, I took her advice and eliminated everything on my sensitivity list from my regular diet, though I do splurge once in a while. I really love my smoothies and know the whey powder is a glutathione precurser, so I have a smoothie once a week (and am searching for a protein powder with no whey, peas, chickpeas, or soy - probably won't find one!). 

sigh ... no more daily Paleo smoothies!

I avoid eggs all week and use only the yolks if we have hard-boiled eggs in a salad, but I have eggs on the weekends when my husband and I have breakfast together. I struggled with how to have a high-protein breakfast with no eggs, but I am finding some combinations that work, like oatmeal made with chia seeds and walnuts or high-protein, high-fiber cereal with pecans and chia seeds (both with plenty of fresh fruit on top and almond or oat milk). I even tried a vegan egg substitute, Just Egg, that was OK. I may have that once a week as a scramble with veggies. 

Much as I hate restricting my diet so much, I did have a pretty good week GI-wise, with few problems (except for today when I ate the whey powder!). And, on the plus side, most of my sensitivities are mild, and nothing at all showed up under meats & poultry, grains & starches, beverages, or vegetables (and very little under fruits and herbs/spices).

Luckily, I can still eat all veggies!

I definitely recommend this kind of food sensitivity testing because I was completely unaware of most of these (and it was inexpensive, about $150).

For my son, discovering--through testing--that he was severely gluten-intolerant was a huge factor in his recent improvements, allowing him to work full-time now! It's really been amazing what a difference eliminating gluten made for him, in all aspects of his illnesses. He was quite resistant to the idea before, since many of his favorite foods have gluten, but now that he's seen the results, he's strictly gluten-free by choice.

 

Relapses and Recoveries

Just a reminder that my last update covered a list of treatments that helped me recover from multiple relapses, including a post-COVID relapse, and a list of lessons learned that are applicable to anyone with ME/CFS or long-COVID.

I also did a video update before my trip, an update on my relapse recovery, long-COVID recovery, and how I track my illness.

What We're Watching and Reading

Summer for me means Big Book Summer! This is a fun, low-key reading challenge I host every year, and this is its 10th anniversary! A Big Book is just any book with 400 or more pages, and any kind of book counts: middle-grade, audio, graphic novel, etc. And it's low-key because you set your own goals, whether that's reading one Big Book between May and September or two or setting aside a stack like I do, to choose from all summer long. It's still only July, so there's plenty of time left to sign up--all the details are at the link above.

Here's my June reading wrap-up, of the four Big Books (two in print and two on audio) I finished last month - all were very good!

My husband and I haven't been watching many movies lately, but as usual, we are enjoying a bunch of TV shows, even while on the road (the advantage of hotels over camping--WiFi!).

The Flight Attendant, based on the novel by Chris Bohjalian, on HBO is a fun, darkly humorous thriller starring Kaley Cuoco as a flight attendant whose life is a total mess. She's a party girl who drinks too much, and one night in Bangkok, she sleeps with a guy she really likes, who is dead in a bed filled with blood when she wakes up beside him the next morning! What follows is a fast-paced, deadly race to find the killer and save herself. Read my full review and watch the wonderful trailer at the link.

The other thriller (slightly less frantic) that we are enjoying is The Old Man, starring Jeff Bridges and John Lithgow. Bridges plays a former CIA agent who has been hiding out, living a quiet life for decades, when suddenly someone finds him and tries to kill him. He's prepared for this, but wasn't expecting it right now, so he goes on the run, reluctant to break ties with his adult daughter, though he knows that's how to keep her safe. This is a very twisty story, filled with old secrets, past histories, and plenty of action and suspense.

How about you? How are you doing this summer? 

And what have you been reading and watching? I'm always looking for recommendations!

TV Tuesday: The Old Man

Usually, my husband and I juggle a bunch of shows on both cable On Demand and streaming, so I was disappointed that there didn't seem to be many new or returning cable shows this summer. Then, we heard about The Old Man on FX (and on Hulu), about a retired CIA agent who suddenly has to go on the run again. Wow, we are loving this show so far!

Jeff Bridges stars as Dan Chase (his current name), the "old man" of the title and the retired agent. As the first episode opens, his quiet life in a remote cabin with his two dogs is shattered when a gunman visits his house one night. He tells the local police it must have been an armed robber, but when they see the intruder had a silencer on his gun, they wonder. Dan immediately grabs his go bag--he was obviously prepared for just such an incident--and hits the road. On the way, he calls his adult daughter to let her know she may not hear from him for awhile. He also talks to Harold Harper, played by John Lithgow. Harold is also retired, as a Director of the FBI, and it's clear the two know each other and have a long history. Harold warns Dan that an old nemesis is after him, with both the FBI and CIA involved. Harold ominously advises Dan to run so that old secrets will remain buried, but Dan doesn't want to break all ties with his daughter, as Harold suggests. After a stunning encounter with the agents pursuing him, Dan holes up in a rental house he knows about, not realizing there is now a divorced woman on site, Zoe (played by Amy Brenneman). He is trying to rest and heal before he heads west, but she is a complication he hadn't counted on. Meanwhile, the efforts to find him escalate within the FBI and CIA.

We have watched three episodes of this seven-episode season so far (since it is currently airing, that's all that's available so far; episode four will be released this Thursday), and we are totally hooked! Bridges and Lithgow are both outstanding in their roles, as is the supporting cast. Bridges in particular plays the role of the mysterious Dan with such emotional depth that you get pulled into his story. Some scenes flash back to when Dan was a younger man in the CIA, so the viewer slowly learns what happened in the past and why the agencies are so intent on finding him now. But Dan is a formidable opponent, even entirely on his own. Secrets (some shocking) are slowly revealed, and even when you aren't entirely sure what bad stuff Dan did in the past, you're still rooting for him! We are absolutely loving this action-packed and suspenseful yet warm and moving show and can't wait to see what happens next.

The Old Man is currently airing on Thursday nights on FX, with episodes available both On Demand and on Hulu.

News From Our House: Chronic Illness Update

I realized this week that it's been two months since I recorded a video related to chronic illness (I've done lots of books videos in between because they are usually short and take less energy!), so I decided to record a little update of my past few months. 

This is just a casual conversation about the ups and downs of my illness recently, but it also includes some information about how I came out of my post-COVID relapse and how I track my symptoms/illness severity:

Oh, and I included some photos and video clips of fun stuff, too, including some very peaceful nature videos!

You can see all of my chronic illness videos on my YouTube channel.

In this new video, I refer back to a recent blog post, ME/CFS, Lyme & COVID: Relapses and Recoveries for details of what helped me recover from my various relapses.

I've already had two crash days this week (unusual for me) and am trying to take it easy today, so that's it for now. Please let me know if you have any questions.

How is YOUR chronic illness life lately?

TV Tuesday: The Flight Attendant

Our adult son is living at home now, due to his job circumstances. Since he's enjoying free cable and all of our streaming services, he decided to buy HBO Max and share it with us (our profile is named Parentals). One of the shows I immediately started, that I've wanted to see since its release last year, is The Flight Attendant. It's based on the novel of the same name by Chris Bojhalian, one of my favorite authors, though I haven't read this particular novel yet. My husband and I are loving this unique twisty thriller with a dark sense of humor.

Cassie, played by Kaley Cuoco of The Big Bang Theory,  works as an international flight attendant who takes full advantage of her youth and freedom. Cassie is the consummate party girl, going out every night, drinking heavily, and sleeping with whomever she finds attractive. On one flight to Bangkok, working alongside with her fellow flight attendants and friends, Megan (played by Rosie Perez) and Shane (played by Griffin Matthews), Cassie flirts with the cute guy in First Class 3-C and ends up going out with him that night. That cute guy is Alex, played by Michiel Huisman, and he and Cassie really hit it off, going from one restaurant/bar to another, until they end the night together in Alex's luxury hotel room. Cassie really likes this guy, and Alex seems to feel the same way about her. Unfortunately, their perfect night together is marred when Cassie wakes up with Alex dead in a puddle of blood beside her and no memory of how the night ended. Cassie has a drinking problem, and this isn't the first time she's been blackout drunk, but it's the first time she's been involved in a murder. Shocked and terrified, Cassie leaves the hotel, tells no one, and gets on the flight back to NY, seriously shook up. Of course, the authorities soon figure out that she was with Alex. Thus begins a frantic, whirlwind mystery/thriller, as Cassie, the FBI, and some mysterious (but clearly bad) people all try to figure out what happened to Alex. Cassie herself is, of course, a suspect, and her spotty memory doesn't help. She avoids her kind, stable brother, Davey (played by T.R. Knight, who will always be George from Grey's Anatomy to me), and enlists her best friend, Annie (played by Zosia Mamet, of Girls fame), who's a lawyer, to help her, but soon she is running from both criminals and the authorities, as she tries to get to the bottom of Alex's murder.

Wow, this is one twisty thriller! Each episode is filled with surprises and new plot turns we never see coming. Kaley Cuoco is outstanding in her role as Cassie, the perfectly unreliable narrator who comes across as a hot mess but is nonetheless likable. The rest of the cast is also outstanding. The writing and dialogue are quick, witty, and engaging, with a dark sense of humor that makes you laugh at Cassie's escapades, even as you feel sorry for her, root for her, and fear for her life! We have just started season two, and with each new episode, we never know where the plot is headed or what is in store for Cassie and her friends (and enemies). We're thoroughly enjoying this fast-paced, zany, unpredictable, and fun show and can't wait to see what happens next!

The Flight Attendant is an HBO original and is available on HBO Max or YouTube TV.

New Podcast: Spoonies with a Purpose

A couple of weeks ago, I shared a new chronic illness podcast, Sick Lessons, started by one of my favorite bloggers.

Today, I have another new chronic illness podcast to share with you, from another favorite blogger!

It's called Spoonies with a Purpose, and the host is Julie Holliday of the ME/CFS Holistic Coach blog. Julie's focus on her blog and in her coaching is "supporting you to find harmony in body, mind and spirit, and to free yourself to live a life of peace and purpose!" I've known Julie for many years; she used to be my editor for articles I wrote for the ProHealth website. She's a wonderful, compassionate person, with some great ideas on how to support yourself in a life of chronic illness.

You can watch/listen to her first podcast episode on her blog (there's a video and also a "Listen Here" audio link) or on YouTube. I'll also include the video below:

This first episode features an interview with Jacqueline Taylor, a patient with ME/CFS and fibro who used her own experiences to reach out and help others. It's an interesting interview, and I learned a lot, too (did you know face yoga is a thing??). Check it out and then subscribe to Julie's new podcast! I can't wait to see more!

ME/CFS, Lyme & COVID: Relapses and Recoveries

I'll admit I've been procrastinating on writing this post because a) the cycle of relapses and recoveries kept extending, and b) well, it's complicated!

So, here I will simplify it as much as I can: what I've been through the past 2+ years and what I think helped me get back to my "normal" baseline (which isn't too bad, comparatively!).

 

Timeline:

March 2020 - I suddenly and inexplicably got worse. I'm still not sure exactly what triggered the relapse (I tested for COVID over and over since the timing was suspicious but had no sign of infection or even exposure back then). My best guess is that my Lyme got worse because I wasn't treating it effectively and caused a cascade of worsenings/relapse.

That relapse continued for over a year, though things very gradually improved, as I added new/revised treatments (see below).

May 2021 - I was finally feeling good again, after many treatments and a gradual improvement over many months--pretty much back to my "normal" baseline.

May & June 2021 - I got my two COVID vaccines. I chose Moderna because data showed it caused the fewest long-term relapses among those with ME/CFS. They definitely worsened my overall condition & symptoms again.

Late November 2021 - Once again, I had gradually improved (plus some treatments helped) and was back to my "normal" baseline again, able to be active and enjoy the holidays.

January 5, 2022 - I caught COVID at my father-in-law's nursing home, where they had a big outbreak (he and my son also caught it). I was severely ill--mostly bedridden--for about 3 weeks and then began showing small improvements, very gradually.

I continued to feel worse than usual for the next four months, though there was some very gradual improvement. I could tell my immune system was stuck in an over-active state because of heavy fatigue and constant flu-like achiness.

End of April 2022 - With my doctor's help, I tried a somewhat risky treatment, but it worked, and I returned to my "normal" baseline with ME/CFS and have remained there since, in spite of a very busy & active May.

 

Treatments That Helped:

So, what helped me get over these relapses and back to my normal (with ME/CFS) level of functioning? It's complicated. I am very analytical and greatly annoyed by unexplained worsenings of my condition! I am also relentless when it comes to trying treatments and finding solutions, so I tried a lot of things. Because I'm analytical, I keep a lot of data, so I have a pretty good idea of what helped the most.

As best as I can tell, these are the treatments that helped me get back to my normal baseline (which is quite good for someone with ME/CFS).

New and More Effective Treatments for my Chronic Lyme Disease:

Even before that relapse that began in March 2020, I saw signs that my Lyme disease was not well-controlled. My right hip was starting to hurt, which is a subtle sign I often don't recognize right away that the Lyme bacteria is shifting into other joints (usually, it affects my knees). So, when I suddenly got a lot worse in March 2020, my first step was to begin seeing my son's Lyme specialist. I hadn't seen a Lyme doctor myself in several years because I thought my Lyme disease was "under control." Ha! Now I know better.

The Lyme specialist immediately began adding new treatments and ramping up older treatments that I hadn't kept up. I brought her new research from Johns Hopkins on which herbals are most effective against Lyme disease (more effective that the prescription antibiotics usually used). She was already familiar with most of that, so between the two of us, we began adding lots of new treatments, including:

• Restart A-L Complex (Byron White protocol), which I had used off and on for years. She also advised me to increase the dose, up to 30 drops twice a day.
  
• Add Stephania (used cautiously and at lower doses, as it can add to the effects of beta blockers, which I also take). I only took it for a few months.
  
• Add Samento (Cat's Claw).
• Add Biofilm Defense.
• Add Japanese Knotweed (later, in early 2021)--one of the herbs determined to be most effective in that Johns Hopkins study.
• Add Crypto-Plus
  

All of these treatments together--especially the increased dose of A-L Complex and addition of Knotweed--led to eliminating my Lyme symptoms and improving my overall condition, gradually.

 

Treating Reactivated Viruses:

It's an old story in ME/CFS--our immune dysfunction causes old, dormant infections to reactivate, especially herpes-family viruses, like Epstein-Barr Virus, HHV-6, CMV, HPV1, and others. 

In my case, testing showed that EBV and HHV-6 were--once again--very positive and reactivated, probably from the Lyme infection going untreated and triggering a domino effect of immune dysfunction. 

I also tested positive for adenovirus, which was curious because it's a common virus that normally causes a mild cold in healthy people but not something that typically pops up for me. This could also have been a contributing factor in triggering my long relapse--exposure to a simple cold virus. It has stayed in my bloodstream since then, so I avoided the J&J vaccine, which was based on an adenovirus.

For these ramped-up viruses, we added/increased:

• Restart Famvir (famciclovir) and then replaced it with Valtrex (valaciclovir) a few months later--I take these prescription antivirals that work against herpes-family viruses every few years when mine get too active again. I'm still on Valtrex.
  
• Add L-lysine, a potent herbal antiviral.
  
• Increase doses of olive leaf extract and emulsified oil of oregano, two herbals that are effective antivirals, antibacterials (so help with the Lyme, too), and antifungals.

 

Diagnosed and Treated Hypothyroidism:

In early 2021, my Lyme specialist ran a full thyroid panel, and much to my surprise (because I get my thyroid tested pretty often), this time it showed low T3. She began treating me with a very low dose of Cytomel (liothyronine). Later, after repeat testing showed it was still slightly low, she increased the dose a bit.

I didn't necessarily see an immediate improvement in symptoms, but having a messed-up thyroid couldn't have been helping me. And I did immediately lose seven normally very hard-to-lose pounds!

 

Supported Immune System

In preparation for the COVID vaccines, I took the advice of ME/CFS experts and added some vitamins and minerals to further support healthy immune function. I was already taking most of the supplements they recommended, but I added/increased a few:

• Increased selenium
• Increased zinc and switched to a more readily absorbed form (zinc glycinate)
• Added liposomal vitamin C (1g per day)--the liposomal form is less likely to cause stomach upset.

 

Increased Inosine

Finally, though this also falls under the category of supporting my immune system, I am listing it all by itself because it's really important.

ME/CFS is, at its heart, an immune disorder and most of our symptoms stem from that dysfunctional immune system. We have found three treatments that help to normalize the immune system (in addition to treating underlying infections) that have greatly helped to improve our conditions over the years:

• Glutathione
• Low-Dose Naltrexone (LDN)
• Inosine

Find more details on all of these immune system treatments, which are all inexpensive and readily available, in my blog post on Treating Immune Dysfunction in ME/CFS.

So, I was already taking all of these, but purely by mistake, I increased my dose of inosine in November 2021--I just miscounted the pills in my weekly reminder boxes one week! I simply went up from 5 a day to 6 a day for my "high dose" weeks (you alternate weeks with high dose and low dose), and like magic, after months of struggling, I finally returned to my "normal" ME/CFS pre-vaccine baseline.

 

Post-COVID Desperation and Steroids: 

So, I was already doing all of that above when I got COVID in January and went into another relapse afterward. For four months, I struggled with severely worsened fatigue, constant flu-like aches, never feeling good, and about 2-3 days a week, completely crashing so badly that I was couchbound or bedridden. I was also severely limited in what I could do.

Since this relapse was definitely triggered by my COVID infection, my ME/CFS specialist tried--and tried and tried--to get me COVID antivirals, but between limited supply and restricted use, I was unable to get them.

If you have lingering symptoms post-COVID (worsened ME/CFS and/or "long-COVID"), this should be the first thing you try: antivirals specific to COVID. There are two currently on the market, and they should continue to become easier to access: Paxlovid and Molnupiravir.

I did finally get molnupiravir but never had a chance to try it because by then, we had tried something else.

My constant flu-like achiness (like recurring sore throats or swollen glands or feeling feverish) told my doctor and I that my immune system was still in overdrive, over-reacting even though the acute viral stage was over. Given this, I asked if I could try a very short course of steroids, and she agreed. 

Steroids suppress the immune system, so they are usually not a good idea for those with ME/CFS (and definitely not long-term). Although parts of our immune systems are overactive, other parts are underactive, so suppressing the entire immune system is normally not effective for us and can do some harm.

The idea in this case was to try a very short course of steroids--just five days of low-dose prednisone--to temporarily calm down my immune system, with the hopes that when I went off it, my immune system would come back up in a more normal state. And it worked! Since then, I have felt pretty good (for me), back to my "normal" ME/CFS baseline and able to be more active again. And no more aches!

Steroids are not without risk, even when used short-term. They suppress your immune system, making you more susceptible to infection, so for that week, I was even more careful than usual, avoiding people and crowded places and wearing my mask even more diligently than usual. 

In addition, I had a very uncomfortable side effect: my normally high heart rate rose even higher. The first day I took prednisone, I woke from my nap (lying in bed), with my heart feeling like it was going to leap right out of my chest. That afternoon and evening, my heart rate--which is normally well-controlled with low-dose beta blockers--was 130 bpm lying down with my feet up! I contacted my doctor, and she quickly called in some extra beta blocker (just a small additional dose of what I already take) for me to take in the afternoons while on prednisone. That helped a lot.

Lessons Learned

So, all of this may seem very specific to me and my situation--and it is--but all of it is applicable to anyone with ME/CFS or long-COVID because these were all common problems underlying our disease. Some things that everyone with ME/CFS or long-COVID can try:

• Diagnose and treat underlying infections--because of our immune dysfunction, we almost always have infections behind the scenes making things worse: undiagnosed tick infections (very common in ME/CFS), old reactivated viruses, yeast overgrowth, fungal infections (including mold exposure), and of course, in the case of long-COVID, COVID itself. All of these can be diagnosed and treated.
• Check Endocrine Function--the immune dysfunction of ME/CFS messes up our endocrine systems, which are responsible for the hormones that regulate everything in our bodies. So, get a full thyroid panel (not just a screening test), check 24-hour cortisol levels (with a saliva test), and ask your doctor to check other hormone levels. 
• Treat Immune Dysfunction--as I said, this is at the heart of ME/CFS and causes many, if not most, of our symptoms. Normalizing immune function will help to improve everything. More details on simple, inexpensive immune modulators (and also treating underlying infections) in my blog post on Treating Immune Dysfunction in ME/CFS.
• If you are suffering from long-COVID or a lingering relapse of your ME/CFS due to COVID--ask for COVID antivirals, in addition to the other things listed here.
• Effective ME/CFS Treatments--for a full overview of the treatments that have helped my son and I the most over the past 20 years (and the reason why these relapses didn't completely make me bedridden), see my Effective Treatments for ME/CFS post, for our experiences. 

As for me, I am happy to be back to my own "normal," still needing lots of sleep at night and a daily nap but with crashes rare now and able to take walks and do other active things again! I'm slowly regaining my stamina.

 

 

 

TV Tuesday: Shining Girls

Sometimes, I just want to start a review with, "OMG, I am LOVING this so much!," and that is true of Shining Girls, a new Apple TV series based on an excellent novel. My husband and I both read the novel back in 2014 (my review is at the link but contains spoilers that are revealed early in the book but not in the TV show, so I recommend reading it after you are partway through the TV series). We both thought the book was so good that I also bought it for my dad for his birthday, and he loved it, too. So far, the TV series is capturing what made the book so outstanding.

Kirby, played by Elisabeth Moss, is living a somewhat limited life, where she is clearly trying not to bring attention to herself. Though she used to be an up-and-coming reporter, she is now working as an archivist clerk for the Chicago Sun-Times, usually hidden away in the basement. She lives with her mother, though something strange is happening to Kirby. She keeps meticulous notes about the details of her life because sometimes things inexplicably shift. For instance, she comes home and has a cat named Grendel, except that some days when she comes home, her pet Grendel is a dog. She was brutally assaulted years ago and ever since, this uncontrollable, random shifting has been occurring in her reality that constantly keeps her off-balance. Then a new woman is brutally murdered, and Kirby sees unmistakable similarities with her own attack. She feels compelled to look into it and gets a reporter named Dan, played by Wagner Moura, involved in helping her to investigate. Dan has his own issues, with drinking and being deemed unreliable by his colleagues, but together, they begin to find other cold cases going back decades that match Kirby's attack and the recent murder. Meanwhile, the audience sees--but Kirby is unaware of--a creepy, mysterious man, played by Jamie Bell, stalking another woman and lurking around the city.

As I mentioned, some key aspects of this mystery are spelled out early in the novel but are only hinted at in the first episodes of the TV show, so I've been careful not to include any spoilers in my review. We've watched four episodes so far (of eight planned), and the suspense and mysteries are mounting. Of course, Elisabeth Moss is outstanding here as Kirby (is there nothing she can't do?), and the supporting cast is excellent also. We already knew from reading the book that the premise is wonderfully imaginative (and chilling), and it's fun to see the secrets beginning to unspool. We are completely hooked so far, and it's quickly become my favorite TV show among the dozen or so we are currently watching. Like I said, I LOVE this show! It's a mystery/thriller unlike any other.

There are currently seven episodes of Shining Girls available on Apple TV, and the final episode drops this Friday, so it is definitely bingeable! Just leave the lights on ...

Great New Chronic Illness Podcast!

It seems I didn't post anything new here last week. Life's been super-hectic! I had four trips in three weeks, and now I'm scrambling to catch up on everything I got behind on while traveling. The good news is that I am finally fully recovered from the COVID I got in early January and will write more about that next week. 

 

This week, I am fully immersed in getting ready for my annual Big Book Summer Challenge on my book blog, which kicks off this Friday! Everyone is welcome to participate in this easy-going event (even if it's Big Book Winter where you are!). You set your own goals to read one or two or however many Big Books you want between the end of May and beginning of September (audios count, too!). And a Big Book is any book with 400 or more pages. This is the 10th anniversary, so I have some special things planned. The details will be posted on my book blog and on my YouTube channel this Friday, so check it out and join the fun! It's a great way to add some joy to summer when you can't manage big vacations or other special events. Everyone enjoys chatting online about what they're reading and hearing about great books from each other.

And Big Book Summer and I are featured on the latest episode of the Book Cougars podcast! We also talked about my book and this blog.

 

While I'm tied up with that, I thought I'd quickly share a great new chronic illness podcast that just debuted. It's called Sick Lessons and is hosted by Sheryl of the A Chronic Voice blog. Sheryl and her blog have been an active, essential part of the chronic illness community online for years, so I was so excited to hear about her new podcast venture!

In her first episode of Sick Lessons, Sheryl interviews another wonderful blogger, Julie Holiday of the ME/CFS Holistic Coach blog (formerly ME/CFS Self-Help Guru). Julie is fabulous, with some great ideas on her blog and in her coaching for living a more peaceful, satisfying life with chronic illness. And she used to work as my editor for the ProHealth website, so I have worked closely with her and have a great amount of respect for her. You can watch that first episode of Sick Lessons here:

In it, Sheryl talks to Julie about her illness journey, acceptance, healing, and more. It's a great interview and very relatable and inspiring.

Sheryl also asked me to sign up for an interview for her new podcast, but I don't know if we'll be able to work that out. She's in Singapore, and I'm on the U.S. East Coast, so I am sound asleep during all of her interview slots! We'll see if we can work something out. In the meantime, check out both blogs and this first podcast episode - you'll find lots of inspiration in all three spots!

Throwback Thursday: Where It All Started!

I got an interesting e-mail a few weeks ago. It was from LiveJournal, one the first (perhaps the very first?) early blog platforms, wishing me a happy 19th anniversary! I had forgotten all about my LiveJournal account, so I clicked the link and stepped back in time ...

I only wrote 14 short entries, between 2003 and 2006, on the site (and then switched to Blogger in 2006), but that brief glimpse into our early years with chronic illness is a fascinating one!

In those very short posts during that timeframe, you can see a huge part of our illness journey. I was dealing with my own brand-new diagnosis of ME/CFS (called CFIDS back then), my son's first brush with Lyme disease, the beginnings of trying treatments for ME/CFS, my struggles with parenting while sick, the extreme highs and lows of chronic illness, and finally, the beginning of my sons' experiences ME/CFS.

In addition, in those few posts, you can see the beginnings of this blog, my mission to find effective treatments, and even my first thoughts of reaching out to find others to connect with.

And here we are, 19 years later! I've been writing this blog for 16 years now, started a local support group that has greatly expanded over the years, started multiple online support groups, and now have a huge network of friends all over the world that I feel connected to.

You can read those early LiveJournal entries here. It's interesting and eye-opening to take a look back, to see where all this began and how far we've come. Jump in the time machine with me!

Did you keep a journal or other records of the early days of your illness?

ME/CFS (and Lyme) Awareness Day & Month: Help Spread the Word!

May 12 is International ME/CFS Awareness Day, and the entire month of May is ME/CFS Awareness Month (and also Lyme Disease Awareness Month). You can do a number of easy things from home to help raise awareness all month long.

There are lots of easy ways for you to help spread the word, including:

• Check out the #MEAction website for their virtual #MillionsMissing2022, with links to different ways that you can help to build awareness, from home, by posting on social media, joining virtual events online, downloading graphics (like the one above - there are many to choose from), and more. Check out all the options at the link.
• Post a personal message on social media (or e-mail it) to your friends and family to help them better understand what ME/CFS is and how it affects you (see mine, below).
• Edit your profile pics on social media with a #millionsmissing frame. Here is the #MillionsMissing profile pic frame. Twibbon also has a bunch of other options, including blue ribbons, from previous years.

As mentioned, I also use this day/month to tell my friends and family about ME/CFS, too. I use my main Facebook account for just close friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May is the exception each year. Here is what I am posting on my Facebook wall for my friends and family:

"Today is ME/CFS Awareness Day & May is ME/CFS Awareness Month (and Lyme Disease Awareness Month). It's even more important this year, as we've gone from 2 million with ME/CFS in the U.S. to more than 15 million with the addition of long-COVID. Most of you know that my son and I both have ME/CFS and Lyme, plus he has 2 other tick infections, but you may not know what that means. ME/CFS is a debilitating immune disorder that has dramatically changed our lives the past 20 years. If you see either of us out in the world or even just look at our photos on Facebook, you may think we live pretty normal lives ... but that's why this is called an Invisible Illness. In reality, you only see us out and about when we are having a good day, and even then, we need a LOT of extra sleep, I can't get through the day without a nap, we almost always have symptoms, and we have to carefully monitor and limit our activity levels. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. Even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks afterward. Crashes are often unpredictable - I am badly crashed today for no discernible reason. A simple infection like bronchitis can knock us out for weeks. But, we are the lucky ones. About 25% of those with ME/CFS are housebound or even bedridden. Worst of all, few people - and very few doctors - understand ME/CFS, so Awareness Month is really important to us. We don't want pity, just understanding. You can help to spread the word by sharing this post or clicking the link to learn more (you can also donate to ME/CFS research on that page). If you know a friend or family member who has or might have ME/CFS or long-COVID (or tick infections which have similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far.

https://solvecfs.org/me-cfs-long-covid/about-the-disease/ "

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask), here are some other ways to help further ME/CFS education and research - share these resources widely!

• Learn more about ME/CFS. Here are some sources of information you can share with others:

1. What is ME/CFS? by Solve ME/CFS Initiative
2. Facts About ME/CFS by Phoenix Rising
3. The CDC's information on ME/CFS

• You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know inflation has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities. I also set up a recurring donation for one of these of just $5 a month - easily affordable but not noticeable day by day!
• Solve ME/CFS Initiative (currently has a matching challenge, up to $500k to double your money!)
  
• Open Medicine Institute
• Simmaron Research
• ME Research UK
• You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
• iGive
• Good Shop
• Amazon Smile
• You can even earn money for CFS research when you use a search engine:
• Good Search
• iSearchiGive

Happy Awareness Day/Month!  Help to spread the word!

(feel free to link to this page or share its information)

New Video: Measuring Limits with Heart Rate Monitor & Step Counter

I just posted a new video today, all about Measuring Limits in ME/CFS and long-COVID, Using a Heart Rate Monitor and Step Counter.

You can watch the video on my YouTube channel at the link above or here: 

The video  covers:

• What is post-exertional malaise (PEM), i.e. a "crash," and what causes it?
• How is orthostatic intolerance (OI) a part of PEM?
• How do you estimate your heart rate limits?
• What should you look for when choosing a heart rate monitor?
• How can you use a step counter to measure your limits?
• How do you use both of these tools to stay within your limits and improve your condition?

If you prefer to read, check out my blog posts on:

Heart Rate and Post-Exertional Crashes

Counting Steps: Another Way to Measure My Limits

 And my article that was published on the ProHealth website:

Using a Heart Rate Monitor to Prevent Post-Exertional Malaise in ME/CFS

Tell me about YOUR experiences pacing with a heart rate monitor, step counter, or other tools! I have a new Apple Watch, and I'd love some tips on what to do with it!

TV Tuesday: Transplant

I know, I know - there are so many medical shows on TV! And we already watch Grey's Anatomy, New Amsterdam, and The Resident. But, last winter, we started a new one, Transplant, that comes at the genre from a whole new perspective. We couldn't wait for season two, which just began a couple of months ago. We're really enjoying this medical show about an immigrant doctor trying to make a new life in Canada.

Bashir Hamed, played by Hamza Haq, is a Syrian refuge living in Toronto, struggling to build a life for himself and his little sister, after their parents--and almost everyone else they knew--were killed in Syria. He can't seem to get hired as a doctor in Toronto, since there is no infrastructure left in Syria to transmit his documentation and qualifications. But when a terrible crisis occurs, Bash lets instinct takes over and puts him own life at risk to save the lives of several strangers ... including Dr. Bishop, the Chief of Emergency Medicine of a local hospital who previously interviewed and rejected him. Now, Dr. Bishop is convinced and adds Bash to the ER staff, though he has to restart his career as a resident, in spite of his extensive experience. The rest of the ER staff isn't so sure about Bash, but his skills and compassion slowly win them over. In his personal life, Bash is struggling to care for his young sister, Amira (played by Sirena Gulamgaus), as they both try to assimilate into Canadian society, while still grieving their terrible losses. On top of all that, Bash is probably suffering from PTSD, as he experiences flashbacks of his horrific experiences in wartime and as a prisoner.

It's refreshing and enlightening to see a person of color and a refuge at the center of an excellent drama like this. The refuge crisis is huge in the world, and there are so many skilled immigrant workers--engineers, scientists, doctors--toiling away at manual labor jobs and barely making a living because they can't get hired in their field in the U.S. or Canada. Bash's story highlights these crises but never in a preachy way. His and Amira's stories are engaging and sometimes heart-breaking but also warm and sometimes joyful. And, while Bash is at the center of this show, it is still a medical drama, complete with new patient stories in each episode and the kinds of crazy experiences we have come to expect from TV ER's. The actors playing Bash and Amira are outstanding, but so is the rest of the cast, and the writing is excellent. Through each episode, as Bash and his fellow medical staff tackle new patients, the audience learns a little more about his backstory and his challenges (and joys). It's a thoroughly engrossing story, and we look forward to each new episode, rooting for Bash and Amira to find happiness in their new lives. And now I see a Season Three is planned; I can't wait!

Transplant is currently airing its second season on NBC. It is also available on Peacock and Hulu streaming services.

News From Our House: COVID and More

Wow, I just looked back and realized I haven't written one of these updates since last September! Where has the time gone? These are just short health updates on what's been going on with my son and I, plus some fun stuff at the end: books, movies, and TV we're enjoying!

If you're new to my blog, I've had ME/CFS, an immune disorder, for 20 years, since 2002. I also got Lyme disease about 15 years ago (and still have it, due in part to my crappy immune system). My older son has had ME/CFS for about 18 years now, and Lyme disease--plus two other tick infections--for about 10 years. He's 27 now. So, a quick update!

 

COVID Hit!

In the first week of January, COVID hit my family. My 96-year-old father-in-law moved into a nursing home at Christmastime, after he broke his hip, and my husband, younger son, and I were all visiting every day. The care home had a big COVID outbreak, so my FIL tested positive January 2nd, my son's symptoms began on January 3, and I succumbed on January 5. Somehow, my husband escaped! You can read about how we fared with COVID in January in this post, My Experiences with COVID and ME/CFS. 

Little did I know when I wrote that post that my post-COVID troubles were just beginning. For the past few months, I have continued feeling worse than usual, with very poor energy and stamina, needing more sleep than usual, and with much worse post-exertional malaise (PEM) than usual. With treatments for ME/CFS (especially for OI and immune dysfunction),  I had gotten to the point where I could function pretty well and manage walks, grocery shopping, etc. with post-exertional crashes quite rare. No more.

I've been working with my ME/CFS specialist, but every prescription she tried to call in for me was refused for various reasons--there are very tight restrictions on all the COVID treatments right now. Long story short, I did finally get one type of COVID antiviral just this week, but I haven't tried it yet. 

By the time that prescription came through, I had already started on a short course of prednisone (steroids)--just five days. The theory is that my immune system's been in overdrive ever since COVID (I've had flu-like aches, a common immune symptom, daily since then), so the steroids will suppress my immune system for a short time, and then--hopefully!--allow it to reset in a more normal state. We'll see.

I'm on day three of the steroids and so far, the only effect I've seen is insanely high heart rate! Just what I needed with my OI, right? The first day I took them, I felt no effects at all the first half of the day and then woke from my nap, lying in bed, with my heart pounding like crazy. All that afternoon and evening, my heart rate (HR) was 120+, even while lying down! I spent hours lying flat with my legs elevated, but it was still horribly uncomfortable, and of course, I worried about a massive crash the next day. 

HR at 120 bpm lying down!

 

Luckily, I was able to get some extra low-dose beta blockers to add to what I already take for OI, and that's been helping each afternoon and evening. My heart rate monitor is still beeping at me as I sit here in the recliner typing (amazing how much typing raises my HR!), but it is at least tolerable and closer to my limit, rather than continuously 20 bpm above my limit. Still uncomfortable, but it should get better each day, as I reduce the steroid dose.

Once I get through this--and possibly also the COVID antivirals--I will write a more focused post on post-COVID/long-COVID. I'm hoping one of these treatments helps me get back to my "normal" baseline, which seems pretty darn good from this perspective!

Note that I wrote a blog post, What to Do If You Get COVID, with tips applicable to both those with ME/CFS and anyone who gets COVID (or develops long-COVID), to help prevent some of the worst complications and outcomes.

I also added another new post recently, Counting Steps: Another Way to Measure My Limits, about how using my phone's step counter has given me another way to know when I am doing too much, in addition to my heart rate monitor. This has been useful during these past months of lower stamina.

My Son - Continued Good News

Thankfully, our older son (the one with ME/CFs and tick infections) doesn't live with us and so was able to avoid the COVID outbreak. He has also had his booster shot--he's been very lucky to have absolutely no lingering effects from any of his three COVID vaccines--just the standard 2-3 day response a healthy person might have. I'm grateful for that.

In fact, he's been remarkably stable for the past year or so. He's still working part-time at the job he started as a summer intern last year. He's looking for a full-time job in his field, applying and interviewing for everything he can find. He continues to move forward in treating his three tick infections. His GI symptoms and OI remain well-controlled. Overall, he is doing quite well--he is happy and able to function most days. We are very grateful for this and hoping he can get a job soon. He's been sick since he was ten years old, and all he's ever wanted is to live a normal life.

New Videos

I have a YouTube channel that features both videos on living with chronic illness and videos about books and reading (you can access each playlist at the links). Since I haven't written an update since September, some of these aren't all that "new," but these are the chronic illness videos I have added since then:

• A Day in My Life with Chronic Illness - short clips from a typical day for me (last fall, so not typical at the moment), with all the ups and downs that go with a life with chronic illness!
• Caring for Others When You Need Care Yourself - a short presentation I gave at the annual Parent & Caregiver Summit, with lots of practical tips.
• Finding Joy in Every Day - Living with Chronic Illness - simple habits that can help you to identify the small joys in your everyday life and create more of those moments, to improve your quality of life and happiness.
• What Are You Looking Forward To? Living with Chronic Illness - This one simple tip I learned from a wonderful psychologist can help when you are feeling stuck in a rut.
• Celebrate Everything, Big and Small! - one of my most popular videos so far, about celebrating the small stuff ... with minimal effort! 
• Orthostatic Intolerance (OI) in ME/CFS and long-COVID - Overview of Orthostatic Intolerance (OI) aka dysautonomia in ME/CFS, long-COVID, fibro, EDS, POTS, Lyme - including what it is, why it occurs, how to diagnose, and how to treat, to improve symptoms and quality of life!
  

What We're Watching and Reading

Again, it's been a LONG time since my last update, so I won't try to recap every movie and TV review. 

You can see my picks for Best of 2021 in a couple of posts from January, with lots of great ideas for what to watch. Favorite Movies Watched in 2021 includes my top picks in different genres, plus a list of all of the movies I reviewed last year. Since I only review the ones I enjoyed, these are all good picks! Note that at the end I list more movies I watched but didn't review--some due to time/energy, not because I didn't like them, so check out my notes on those, too.

So far, in 2022, I've reviewed four movies, all excellent:

• 
  Finch - warm, funny, moving post-apocalyptic film starring Tom Hanks and his robot companion
• Parasite - won Best Picture Oscar in 2019 ... for good reason!
• Honey Boy - semi-autobiographical story of Shia LeBeouf's dysfunctional Hollywood childhood
• The Adam Project - time travel action-adventure with Ryan Reynold's character working with his 12-year-old self to save the world. Great cast and a lot of fun!
  

 

And, for TV shows we've been enjoying lately, check out my Favorite TV Shows Watched in 2021 post, which also includes my top picks in different genres plus other reviews of TV shows I enjoyed last year.

I've only added one more TV review so far this year, but it's an outstanding one: The Handmaid's Tale. Wow, this show has totally blown both my husband and I away! Drama, action, a horrific dystopian world, and a fierce heroine to cheer for. Everything about it is excellent, from the acting to the sets to the writing. We can't wait for season 5.

As for what I'm reading ... so many great books! It's already been an incredible reading year for me. You can check out some of my book videos on my Books Playlist on YouTube. The monthly summaries provide a nice quick review of what I read the previous month - not a bad book in the bunch so far this year! Note that I read a lot of middle-grade books in March for a Middle-Grade March Readathon, so if your reading abilities are limited, and you enjoy middle-grade, check out my March Reading Wrap-Up. Every monthly summary includes audio books, too.

 

On my book blog, you can check out my Best Books Read in 2021 post for some really great choices - my top picks read last year in different genres/types, including audio and middle-grade and YA.

 

I think you're all caught up on my life now!

What's been going on in YOUR world?

How's your health been so far this year?

And what have YOU been reading and watching? I'm always looking for good recommendations!

You can reply in the Comments below or on Twitter or this blog's Facebook page. I'd love to hear from you!