News From Our House: Awards, Vaccines & Treatments

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

Award Nominations for Me and this Blog

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

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

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

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

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

COVID Vaccines & Recovery

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

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

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

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

 

Continued Treatments and Improvements 

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

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

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

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

 

What We're Watching and Reading

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

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

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

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

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

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

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

 

 

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

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

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

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

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

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

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

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

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

Nominated for Awards - Please Endorse Me!

Hi, all!

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

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

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

Now I need your help to become a finalist!

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

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

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

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

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

Movie Monday: A Quiet Place Part II

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

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

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

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

To All Who Receive My Posts Via E-Mail

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

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

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

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

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

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

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

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

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

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

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

TV Tuesday: Summer Shows 2021

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

Returning Favorites

The good news? Our all-time favorite show is back for some extra end-of-season episodes. The bad news? These will be the last episodes ever. Good Girls, a hilarious, moving, thrilling series on NBC about three moms who get pulled into a life of crime, is back for an extra four episodes, but the powers that be have decided that this fourth season will be its last. This show is so well-done, starring Christina Hendricks, Retta, and Mae Whitman as the title moms and Manny Montana as the hot but dangerous crime boss. We just watched the second-to-last episode last night and can't even begin to imagine how they'll wrap it up when the last episode airs on July 8. 

Another favorite of ours is back for its third season. In the Dark on CW (earlier seasons on Netflix) is another story of regular people getting pulled into hard crime, but in this case, it's a blind woman named Murphy, her best friend, Jess, who's a veterinarian, and their co-worker, Felix. In the first episode, Murphy "witnesses" the murder of a good friend, a teen boy killed by drug dealers. Even though Murphy is blind, she knows enough to help the police and is determined to help bring her friend's killers to justice. But, this is a twisty tale, and between criminals, good cops, crooked cops, and deals gone wrong, the three young people, who all work at Murphy's parents' guide dog charity, soon find themselves into the criminal world way too deep. It's an excellent show, a dark thriller but with a great sense of humor, and we are excited to hear it will be back for a fourth season in 2022.

I finally finished reading the last book in the Mr. Mercedes trilogy by Stephen King (including Mr. Mercedes, Finders Keepers, and End of Watch), so now we can finish watching seasons two and three of the Mr. Mercedes TV show on Peacock. Luckily, someone warned me that the TV show swaps things around, with season two covering book three and season three tackling book two, so I knew to finish the whole trilogy before going past season one. I have made the mistake of starting season two of the show immediately after finishing End of Watch, so I am a little annoyed by all the changes they made: killing off beloved characters, adding entirely new characters, shifting the plot, and even changing the seasonal setting. But, all that said, it is still an excellent TV series and very well-done, a detective/thriller show with some paranormal elements. If Stephen King can accept all these changes to his books, I guess I can, too.

Another show we enjoy based on a book series is Bosch on Amazon Prime, adapted from the huge series of books by Michael Connelly about Detective Harry Bosch. We both love Connelly's novels and the Bosch character, and the TV series is an outstanding adaptation. Each season is generally adapted from a single novel, and the cast is excellent, headed up by Tutus Welliver as Bosch and Jamie Hector as his partner, Jerry Edgar. Lance Reddick co-stars as the Chief of Police. This is a classic police procedural, set in L.A., but of the highest quality. We were very sorry to hear this seventh season is its last, but word is that a spin-off is coming ... hopefully based on Connelly's newest character, Detective Rene Ballard.

For All Mankind is an entirely different kind of show on Apple TV. No crime or thrillers here. It is an alternate history of the U.S. space program, in a world where the Soviets first beat us to the moon in 1969 and then quickly sent the first woman to the moon, completely changing the U.S.'s own progression in the space race. In this world, which includes some real-life members of NASA and historical news excerpts, as well as some fictional characters, the race to the moon is accelerated by the Soviet's accomplishments, women become an integral part of the space program early on, and a base is established on the moon to keep the Soviets (who have their own base) from taking over. We are now watching season two, which takes place in the 80's, after the U.S. moon base has grown tremendously and lithium has been discovered on the moon. Can you imagine the implications? The show is outstanding, suspenseful and thoughtful, with excellent cast and writing. It's a fascinating look at an alternate history and science progression but also a drama about the lives of the astronauts, their families, and the other employees of NASA. Highly recommended.

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

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

 

 

New Shows We Might Try

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

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

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

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

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