Sunday, October 10, 2021

Weekly Inspiration: A Day in My Life


I finally finished editing and uploaded my own Day in the Life with Chronic Illness video, showing you a glimpse into my life with ME/CFS, Lyme disease, and OI (POTS and NMH).

As I mentioned in a recent Weekly Inspiration post, I enjoy watching chronic illness "slice of life" videos on YouTube. These are the videos that provide a glimpse into someone else's life with chronic illness. Some are Day in the Life videos, capturing a single day, and others, like the Chronically Jenni Weekly Vlogs I highlighted in that earlier post, cover more time.

What I find interesting and inspirational about these kinds of videos is their honesty and authenticity. As opposed to what you normally find online and on social media, these chronic illness videos almost always show the unvarnished truth, in this case about what life with chronic illness is like: the good, the bad, and the ugly. I find it comforting to see someone else do something small, like meet a friend for lunch or go to a store, and then have to lie on the couch afterward--I feel bad for them, but it means I'm not alone! There's comfort in community, in knowing that others face similar challenges as you do ... and are managing their own version of life and happiness.

So, for all of these reasons, I recorded my own Day in the Life with Chronic Illness video. You can watch it on YouTube at the link (and be sure to "Like" and leave a comment, if you want), and check out the Notes below the video on YouTube. And I will also embed the video here:


As I explain in the introduction to this video, I recorded it on a day when my husband was out of town (a rarity these days!) but otherwise, it was a pretty typical day for me. I wasn't crashed, and I was able to manage small bits of activity, with periods of rest in between. I tried to include everything in my daily routine, to give you a glimpse into my life with ME/CFS, Lyme, and OI (POTS and NMH) and the many kinds of self-care that help me. Since I enjoy the honesty and authenticity of others' videos, I tried to give you the same thing here ( I even started recording when I first woke up!).

Finally, as I mention in the video and in the notes below it, I am only able to manage the level of activity and functioning shown in the video because of the treatments I have found over the past 19 years that have helped both me and my son to feel better, tolerate more exertion, normalize our immune systems, prevent and lessen crashes (flare-ups), and overall improve our quality of life. For more information on Effective Treatments for ME/CFS (most of which are readily available worldwide and inexpensive), click on that link to the page here on my blog and/or check out the Notes below the video on YouTube.

 

And I would love to hear about YOUR life! What is similar or different than mine? What things help you to manage life with chronic illness?

Tell me about your own daily life in the comments below.


Tuesday, October 05, 2021

TV Tuesday: Big Sky

I love fall! Besides the perfect, cooler weather after summer's high heat and humidity and the beautiful colors of fall, lots of our favorite TV shows are back with new seasons! One of the shows we have most looked forward to, Big Sky, has just returned with its 2nd season. This mystery/thriller just gets more and more twisty, with surprises in every episode! To avoid any spoilers, I will just focus on the beginning of season 1 in my description.

As the title suggests, Big Sky is set against the gorgeous natural backdrop of Montana's mountains, forests, and rivers, but what's happening here is neither pretty nor natural. Two women and best friends, Cassie (played by Kylie Bunbury) and Jenny (played by Katheryn Winnick), run their own private investigator business in Helena, MT. Jenny is married to Cody, played by Ryan Phillipe (a local Delaware native!), and they have a teen son named Justin, played by Gage Marsh. In the first episode, Justin is waiting for his girlfriend and her sister to drive in from out of town for a visit. The two sisters, Danielle (played by Natalie Alyn Lind) and Grace (played by Jade Pettyjohn) are shown in their car, singing along to music and enjoying their road trip. Then disaster strikes as the two young girls are abducted on a deserted highway. Justin alerts his parents that they never showed up and aren't answering their phones, and soon both the police and Jenny, Cody, and Cassie are searching for the girls and investigating. Montana State Trooper Rick Legarski, played by John Carroll Lynch, is brought in to help with the search, but he doesn't seem worried and explains that lots of young women go missing from this area all the time. Soon, another young woman, Jerrie (played by Jesse James Keitel), is kidnapped from a truck stop by a creepy guy named Ronald, played by Brian Geraghty. And the twisty tale is off!

This is a tense and suspenseful story, with plenty of surprises you will never see coming. The acting is all top-notch from this ensemble cast, and the writing is excellent. The plot is classic thriller, with plenty of action and suspense in every episode. We have just started the newly begun second season, and I couldn't tell you anything about it without giving away all kinds of spoilers from season 1--a lot happens in every single episode, to keep you guessing (and watching). Oh, and it's got a great soundtrack behind the action, too! We've been waiting for this new season to come back, and this compelling, gripping show has already shocked us and taken us by surprise, in the first episode of season two. This is one of our favorites these days, in part because it doesn't fit the typical mold. Highly recommended for mystery/action/thriller fans.

Big Sky is currently airing on ABC on Thursday nights or you can catch it On Demand or streaming on Hulu.

Wednesday, September 29, 2021

News From Our House: Ups and Downs


My son and I both have ME/CFS, an immune disorder, and Lyme disease, plus he has two other tick infections, bartonella and babesia. We've been battling these chronic illnesses since I first became ill in 2002. It's been about two months since my last News From Our House update, with lots of ups and downs for me and nothing but good news for my son!

My Update: Up, and Down, and All Around

I would say that overall, I am still not back to my pre-2020 baseline (I went into a bad relapse beginning in March 2020), though I am generally doing better than I was six or nine months ago.

Improving Immune Function

I was feeling frustrated by feeling like I was stuck and not quite back to my previous good functioning. I could tell that my immune system was still a bit off (more than usual!) and wondered if I was perhaps still feeling the effects of my second COVID vaccine (entirely possible). Then, it occurred to me to check the calendar to see when we had last taken a break from inosine. It was about 6 months ago! We're supposed to take a two week break (at least) every 2-3 months.

Inosine is an immune modulator. Since the immune dysfunction in ME/CFS is neither fully deficient (as in HIV/AIDS) nor fully overactive (as in autoimmune diseases) but a mix of the two, immune boosters and immune suppressants don't work for us. You can read more about the specific kind of immune dysfunction in ME/CFS in my post on Immune Abnormalities in ME/CFS. So, inosine, an immune modulator that helps to balance and normalize the immune system, has helped both of us immensely over the years, resulting in fewer crashes, less severe crashes, better tolerance of exercise/exertion, and generally reduced symptoms. However, like all immune modulators, it only keeps working if you constantly vary the dose so your body doesn't get used to it, which includes sometimes taking a complete break from it. You can read more about inosine, which is cheap and readily available, here.

So, I texted my son that it was time for our 2-week break from inosine. We did that and then started back on it, and ... like magic, I felt good again! Those lingering symptoms, reduced stamina, and increased exertion intolerance all cleared up, and I felt back to my pre-relapse baseline. What a relief!

That improvement came just in time to help pack and move my 96-year-old father-in-law from Independent Living to Assisted Living, and we had some very long days that I managed without crashing at all! We got him moved in, and I helped him through some transition issues the next day.

A Virus Hits Me

The following day, a Friday, we were enjoying an outdoor take-out dinner with good friends around a campfire when I suddenly felt awful. Out of the blue, I was achy, exhausted, and even nauseous. I had no idea why, but we headed home where I collapsed on the couch. The reason behind the unexpected crash became clear later that night when I developed a full-blown stomach virus. Like many with ME/CFS, I rarely catch any kind of virus, but I suppose that recharging my inosine normalized my immune system enough to catch this one--lucky me! It's been going around locally, felling even some of my healthy friends. It hit me hard, and I was in bad shape for several days: horribly achy, feverish, flat on the couch, and subsisting on clear broth, plain potatoes, and an occasional piece of sourdough toast (actually a treat for me, since I don't usually eat bread). Gradually, I began to feel better and get back to a more normal diet.

A Mystery Crash

I had a few good days and then last week, I crashed again, with immune symptoms (sore throat and flu-like aches) and exhaustion. It's now been 8 days, which is very, very long for me. These days, when I am in good shape, an over-exertion crash is usually mild and lasts less than a day, and crashes triggered by infections are rare for me. But, with the length and severity, there must be some sort of infectious trigger behind this. Maybe that stomach virus is still floating around in my system, keeping my immune system hyper-active? Maybe I was exposed to someone's cold or other virus? It's driving me crazy not to be able to figure out cause and effect and fix it. I have increased all of my herbal antivirals, just in case, but the crash continues.

Tomorrow is our 32nd anniversary, and with my father-in-law now in Assisted Living, we can begin to travel again (in short spurts), so we have reservations at the beach for two days. I went today to our Lyme specialist and got the IVs that my son usually gets there: Myer's Cocktail (a standard combination of vitamins and minerals) and a bag of glutathione. Glutathione is essential to energy production, detox, and immune function (more on glutathione and different ways to increase it here), so I am hopeful it will help my immune system get back to normal. However, getting the IV did require a 45-minute drive each way! So far, a few hours later, I am tired and still achy, but I am hopeful that I will feel better by tomorrow so we can enjoy our trip.

I have other updates I will save for another time, like lab tests finding two molds in my system. I haven't been able to try any treatments yet, with all this other stuff going on!

I did discover, thanks to the stomach virus, that I do still need my Lyme treatments. Since I missed them for a few days when I couldn't hold much food down, I thought I'd try going off them, but after about 5 days, the nausea (a key Lyme symptom) returned, so I immediately got back on them.

 

My Son: Nothing But Good News

On the other hand, my son has had the best few months he's had in many, many years--probably the best he's been in over a decade! He had his first real, almost-full-time job this summer, an internship in his field that he is still continuing into the fall. He has been working 30+ hour weeks--and managing it with no problem! He is so happy to be productive and functioning, and we are all absolutely thrilled to see this major step forward. It really feels like a miracle, after 17 years of often devastating chronic illnesses.

At his last visit, his functional medicine specialist, who's been a big part of this improvement, asked what we felt had the biggest positive effects, to get him so improved. Some things that came to mind:

  • Diagnosing and treating dozens of pathogens in his GI system that not only led to severe and serious GI symptoms but overall symptoms, too (most of the immune system is in the gut).
  • Diagnosing severe gluten intolerance and switching to a strict gluten-free diet. Once he saw the severe symptoms gluten causes him (after being off it for a bit), he became very motivated to change his diet!
  • Giving up alcohol. He got into some bad habits during college--as most of us did back in the day!--but alcohol is like posion when you have Lyme disease and/or ME/CFS.
  • All of the above--plus some other adjustments--have improved his detox abilities, allowing him to finally move his treatment of tick infections (mainly Lyme and bartonella) forward. For reasons unclear (including some genetic issues), he has poor detoxing capabilities and Herxes very severely to even tiny increases in treatment for his tick infections. For comparison, it took me about a month to get up to a high dose of 20 drops twice a day of A-L Complex, the Byron White herbal product for treating Lyme. He has been at it for over 10 years (with both A-L and A-Bart for bartonella) and in 2019 could still only tolerate 1 drop of each, every other day! He has now been able to increase that dose to 3-4 drops of both every day. Those are still tiny doses, but he is making progress and seeing the results!

So, he is feeling good, working, and beginning to see the possibility of a future for himself. He is very happy, which makes this mama's heart happy, too!

 

New Videos & Blog Posts

I've continued to add videos to my YouTube Channel. You can see the full channel, including book videos at that link or my chronic illness playlist here. I've added some new chronic illness videos you might be interested in, including some based on chapters from my book:


 

And I have recorded a pretty cool Day in the Life video (actually about 30 separate 1-min videos!) that I need to find time/energy to edit and upload, so look for those soon.

Here on the blog, I updated my School Accommodations posts (from 2012!)--essential reading for anyone with sick kids, teens, or young adults. 

 

What We're Watching and Reading

We haven't ventured back out to the theater since my last update. There was only about two weeks between me being fully vaccinated and when the COVID numbers began to rise again! But we've seen some great movies on streaming at home, including:


Find Me
- a moving, funny, inspiring road trip through national parks that is poignant and in gorgeous settings. Right up our alley! 

The Nice Guys - an entertaining action/thriller with a great sense of humor, set in the '70's


The Map of Tiny Perfect Things - a teen time loop movie (ala Groundhog Day) with a lot of fun and a lot of heart.

 


And just one TV review recently, of Dickinson, a fun, creative show about the life of a young Emily Dickinson that I am loving! 

I am out of energy, and it's time to make dinner, but if you are interested, you can see my latest book and reading updates on my book blog.

 

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

Tuesday, September 21, 2021

TV Tuesday: Dickinson

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

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

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

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

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


Sunday, September 19, 2021

Weekly Inspiration: Chronically Jenni Vlogs


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

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

Here is her latest Weekly Vlog:


And you can see her full channel on YouTube.

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

Friday, September 17, 2021

Free Parent & Caregiver Summit - Monday!


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

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


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

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

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

Thursday, September 16, 2021

Throwback Thursday: School Accommodations for ME/CFS


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

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

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

I hope you find this updated information helpful!

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

Sunday, September 12, 2021

Weekly Inspiration: Our Chronic Illness Story


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

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

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

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


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

Sunday, August 29, 2021

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


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

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

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

Watch the video here

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

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

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

Thursday, August 26, 2021

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


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

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

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


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

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

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

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

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


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


Where were YOU 13 years ago?

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



Monday, August 23, 2021

Movie Monday: The Map of Tiny Perfect Things

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

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

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

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


Monday, August 16, 2021

Movie Monday: The Nice Guys

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

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

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

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

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


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

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

Sunday, August 15, 2021

Weekly Inspiration: A Much-Needed Respite


When Life Gets to Be Too Much

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

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

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

 

Enjoying a Respite

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

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

Relaxing on the screened porch

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

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

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

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

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

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

 

Take a Break!

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

 

 

Are YOU in need of a respite??

Wednesday, August 04, 2021

Weekly Inspiration: A Plan B Day


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

 

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

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

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

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

You can find more information on my book here.

Monday, August 02, 2021

Movie Monday: Find Me

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

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

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

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


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

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

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

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

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

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

 

 

Thursday, July 29, 2021

News From Our House: Awards, Vaccines & Treatments


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

Award Nominations for Me and this Blog

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

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

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

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

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



COVID Vaccines & Recovery

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


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

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

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

 

Continued Treatments and Improvements 

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

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

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

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

 

What We're Watching and Reading

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

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

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


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


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

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

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

 

 

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

Wednesday, July 21, 2021

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


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

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

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

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

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

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

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