Thursday, July 29, 2021

News From Our House: Awards, Vaccines & Treatments


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

Award Nominations for Me and this Blog

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

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

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

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

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



COVID Vaccines & Recovery

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


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

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

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

 

Continued Treatments and Improvements 

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

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

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

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

 

What We're Watching and Reading

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

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

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


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


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

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

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

 

 

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

2 comments:

Astrid said...

I'm so glad you both have been fully vaccinated now and that you didn't experience the horrible side effects some mention. It's so interesting to read your story, as I have very little knowledge of ME/CFS or Lyme. Congrats on all the award nominations!!!

Sue Jackson said...

Thanks, Astrid! Yes, ME/CFS and Lyme are both pretty unique and interesting! Many (about 15% currently) with ME/CFS who get the vaccines are still badly relapsed a month later because of the unique kind of immune dysfunction we have. It is hard to predict who will react like that, so we were fortunate (and did a lot of research and prep first).

Thanks so much for taking the time to comment!

Sue