Tuesday, November 30, 2021

Giving Tuesday 2021 - Multiply Your Donations!


Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday & Cyber Monday. Every little bit counts, even if it's only $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did several years ago with OMF (see below) so that $5 is automatically donated from me each month - I don't have to think about it or do anything else, and my donation adds up to $60 a year! It only takes a few minutes to either donate or set up recurring donations.

And there are some amazing deals in place right now that will double or even triple your donation, turning $10 into $20 or $30!

Where to Donate:

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy--all are doing wonderful work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

Host Your Own Fundraiser:

To have an even bigger impact on these organizations, you can host a Fundraiser on Facebook. For Giving Tuesday, Facebook has pledged to match up to $8 million dollars in donations! I have hosted fundraisers on Facebook for my birthday, and it's very simple to set up. Just go to the Facebook Fundraisers page and click on "Select Nonprofit" (all of the ones listed above are available), then follow the steps. You set your own fundraising goals, share your fundraiser with Facebook friends, and then Facebook will double whatever donations you bring in! More info on how it works and the matching gift today here.

Donate While Shopping:
And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop!  

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. To show you how well this works, my iGive page currently shows that I have selected Solve ME/CFS as my cause, that I have personally earned and donated $293.44 to them, and that they have earned a total of $6527.70 from all supporters! Isn't that amazing? Over $6500 just from clicking a button before we shop online.

Amazon is not a part of either program listed above but has its own charitable donation program: AmazonSmile. Just sign up and choose your charity (most of those listed above are options). My quarterly report from AmazonSmile from September 2021 says they sent a payment of $1387 to Solve ME/CFS for the quarter and that to date, the organization has received $16,936 from AmazonSmile! I added more to that yesterday. These shopping links really pay off, with almost no effort and no cost to you.


With so many painless ways to give, we can all help to move ME/CFS research forward and support patients!

Tuesday, November 23, 2021

Weekly Inspiration: Managing the Holidays


We are getting ready for a long road trip to my hometown, Rochester NY, for the first time in 2 1/2 years to spend Thanksgiving with my extended family. I am very excited to see everyone again and be reunited, but I am also worried and anxious about caring for myself away from home, the exhausting effects of all that social interaction, and being with certain family members who refuse to even acknowledge my illness, let alone be supportive. To be honest, my stomach has been in knots the past few days thinking about encountering these people (to be clear, most of my family is kind and supportive). And now I have a new concern, worrying about leaving my father-in-law in his assisted living facility for a few days without us being able to visit, as his dementia continues to worsen.

So ... yay, holidays!

I know I will enjoy our visits, and it will be wonderful to see my family again, but this time of year does present some unique challenges for those of us with chronic illness.

I wrote an article for the ProHealth website, which I reprinted here on the blog (and adapted for my book), Managing Family Relationships During the Holidays ... and Beyond. You can read the full text of the original article at that link.

I just re-read it yet again, and it's a good reminder for me, even after so many years. I think my relapse/worsening since March 2020 has increased my anxiety levels quite a bit, but whatever the cause, I was a lot more accepting and zen back when I first wrote this article!

So, I relearned some hard lessons, and I hope you also get some helpful tips from this article.

Happy Thanksgiving!

Sunday, November 21, 2021

Weekly Inspiration: Finding Joy in Every Day


For this week's living with chronic illness inspiration, I have a new video, Finding Joy in Every Day, on my YouTube channel. It's adapted from a chapter in my book, Finding a New Normal: Living Your Best Life with Chronic Illness, and discusses some simple habits that can help you to identify the small joys in your everyday life and create more of those moments, to improve your quality of life and happiness. These simple steps have really helped me.

 

 

I don't know about you, but this is a very stressful time of year for me, plus we've had extra stresses caring for my elderly father-in-law and going to an out-of-town family funeral. More than ever, I need to recognize the small moments of joy in every day, learn to see them and make more of them, and make time for myself.

I hope you find this video helpful.

What everyday moments bring YOU joy?

Tell me in the comments below.

You can also connect with me on Twitter and on this blog's Facebook page. There are kind and supportive chronic illness communities in both places. Connecting with others like me brings me joy!

Thursday, November 18, 2021

Chronic Illness Caregivers


Did you know that every November is National Caregivers Month? I wanted to acknowledge it and share some resources because so many of us living with chronic illness either have family caregivers helpings us or are caregivers ourselves. And some of us (like me!) fall into both categories.

There are some general resources, including tips, community, and more, available for all kinds of caregivers through the Caregiver Action Network. They also include graphics and tags for sharing on social media, to help connect with other caregivers.

For those specifically dealing with ME/CFS, either in themselves or those they care for, there are several excellent resources.

Solve ME has Resources for People with M.E. and Caregivers, including lots of great information on symptoms, post-exertional malaise, applying for disability, finances, finding a doctor, and more.

#ME Action has a whole set of resources specifically focused on caregivers, including a Facebook group for support, a newsletter, and periodic virtual meet-ups for caregivers.

American ME and CFS Society also offers a long list of tips, plus additional resources for caregivers of those with ME/CFS.

I also have resources for caregivers. My book, Finding a New Normal: Living Your Best Life with Chronic Illness, includes chapters on When Your Child Is Chronically Ill and Coming of Age with Chronic Illness, plus the entire book is helpful for caregivers in not only understanding what their loved ones are going through but also practical ideas on offering emotional support.

Ten years ago, I started a Facebook group, Parents of Kids & Teens with ME/CFS and Related Illnesses, which is now being managed by several other wonderful parents. It's a warm and compassionate group of parents from all over the world (1600+ now), but it is also an amazing collection of experience and knowledge, with parents helping parents with treatments, finding doctors, and school issues, as well as offering each other emotional support. To join, just follow the link, click the Join button and answer the questions (adult caregivers of adult "children" are welcome, too).

 

Finally, if like me, you are both a patient and a caregiver (besides my grown son, I am also helping to care for my elderly father-in-law with dementia), check out my video presentation from this year's Parent + Caregiver Summit, Caring for Others When You Need Care Yourself.

And my own personal tip, gleaned from the experience of my husband and I is ... Give yourself a break! Even if you can only manage an hour or two, find someone to lend a hand (family member, friend, or hire someone) so that you can take some much-needed time off. You won't be able to help your loved one if you are exhausted and stressed yourself. I wrote about this on the blog recently in a Weekly Inspiration post: A Much-Needed Respite.

What are YOUR experiences as a caregiver? Are there resources for caregivers that you recommend or have found helpful? Please share your thoughts, tips, and experiences in the comments below.

Happy National Caregivers Month!

Tuesday, November 16, 2021

TV Tuesday: The Big Leap

Together, my husband and I watch a lot of TV shows, including many action/thriller types, medical dramas, sci fi, legal dramas, and a few select comedies. But, on the rare occasions when I have some TV time to myself, I most enjoy watching dramas and especially anything that includes singing and/or dancing. So, while my husband was golfing last month, I tried a new show, The Big Leap, a fictional drama about a reality dance show. I was hooked! I have been loving this show, both for its drama and for the wonderful dance scenes in each episode.

Reality TV director Nick Blackburn, played by Scott Foley, has a new show to focus on, and he is determined to make it a hit. It's a dance competition with open auditions, with the ultimate goal of doing a production of Swan Lake with the disparate group of amateur dancers (of all kinds) that are chosen. Former ballerina Monica, played by Mallory Jansen, and dancer/fashion icon Wayne, played by Kevin Daniels, will act as judges and directors of the final production. The contestants who make it onto the show (this is still first episode stuff) are a varied group, from diverse backgrounds and with very different dance styles. Simon and Brittney, played by Adam Kaplan and Anna Grace Barlow, are ballroom dance partners who have won many awards (and have an interesting backstory). Julia, played by Teri Polo, is a married mother of two daughters who feels stuck in her current life and long ago had a dream of being a professional dancer, with some training in classical ballet. Many of the other contestants have less structured dance backgrounds. Paula, played by Piper Perabo, is a breast cancer survivor with some good moves on the dance floor. Mike, played by Jon Rudnitsky, is down on his luck: laid off from his job, recently divorced and still pining for his ex-wife, and drinking way too much. His dancing has mostly been confined to dive bars while drunk. Gabby, played by Simone Recasner, and Justin, played by Raymond Cham, Jr., were best friends in high school, where Gabby was on the school dance team and Justin was known for his breakdancing moves. They both gave up their dreams, though, and Gabby is struggling to raise and support her son on her own, while Justin works at a bowling alley. Other contestants are into hip hop and other contemporary dance styles and from very different backgrounds. To boost ratings, Nick adds a final contestant, NFL player Reggie, played by Ser'Darius Blaine, who is athletic but has no dance experience and recently ruined his career (he was "cancelled"), providing him with good incentive to show his old coach that he's pulled himself together. Together, along with other dancers, these contestants go through various trials and tribulations each week, in both their personal lives and on camera (and sometimes the two collide), while Nick tries to boost ratings with as much drama as possible.

I am just loving this show, in part for the same reasons I have loved shows like Glee and Zoey's Extraordinary Playlist: I've come to care about the characters and root for them, plus the music and dancing in every episode lift my spirits! The dance aspect alone caught my eye when I saw trailers for the show (check out the one below--it still gives me chills). I also spotted Teri Polo in the cast, whom I absolutely loved in The Fosters, another old favorite show. After watching 8 episodes so far, I have come to enjoy all of the cast members, together forming a wonderful ensemble. The writing is clever, with humor woven in, as well as drama. And, of course, there are the dance scenes! Though they are working on Swan Lake, there are plenty of opportunities for each of the characters to indulge in his or her own special form of dance, which is just fun and uplifting to watch. I'm loving this show and looking forward to the next episode ... my husband is golfing tomorrow afternoon!

The Big Leap is a FOX network show, so it is available On Demand, as well as streaming on Hulu.

This trailer leaves me smiling every time!

Sunday, November 14, 2021

Weekly Inspiration: Find Your People


When you live with chronic illness, one of the most difficult aspects can be the loneliness and isolation. When you have an invisible illness, like ME/CFS (myalgic encephalomyelitis or chronic fatigue syndrome), fibromyalgia, EDS, Lyme disease, or POTS, you can feel even more isolated, even (or especially) when you are among healthy friends and family. The solution is to find your own group of people who "get it," who understand exactly what your strange life is like because they are living a similar one.

In the almost-20 years since I first became ill with ME/CFS (and later, Lyme), I have found or created my own community of other patients, both online and locally. These various groups are my safe space, my comfort zone. They are where I "go" (even virtually) when I am at my worst and can't manage interaction with healthy people. They are also the people I turn to when I want to share my victories; the only people who can truly understand the exhilaration of a rare social outing or being able to take a short walk without getting sicker.

It all started with this blog, way back in 2007, when I began writing about my own experiences with ME/CFS, just to help process what I was going through (by then, both of our sons had ME/CFS, too). I was surprised and thrilled when others actually read my blog and began to leave comments, sharing their own experiences! Some of those early commenters here on my blog have become close friends over the years.

By 2010, I had met, heard about, or interacted online with a few other parents of sick kids in my local area, so I decided to plan a lunch where we could all meet. This was a life-changing afternoon for all of us and the start of our local support group, which now includes about 40 different families in our region. That first "mom's lunch" led to a family potluck (the start of a tradition), where our husbands and kids met also, and a few other local families joined us. That evening was just as life-changing for the group of sick kids, all isolated and many unable to attend school or play with friends, as it had been for us parents to meet. Since then, our local group has continued meeting several times a year for weekday lunches and weekend potlucks. Besides understanding, support, and the chance to trade advice on treatments, doctors, and school accommodations, we have developed lifelong, cherished friendships. We are now meeting on Zoom for the time being, but those Zoom meetings still provide a wonderful opportunity to bond, support each other, and share information.

Then, in 2011, I wanted to connect even more parents of sick kids (who have some very complicated and challenging roles), so I started the Parents of Kids and Teens with ME/CFS and Related Illnesses group on Facebook. That group has now grown to over 1600 members from all over the world, and I have turned over its daily admin to other parents. But, the group still retains its original focus on kindness, compassion, and support, with parents who are not only understanding of others' situations but who can offer loads of hard-earned experience in all kinds of situations. The collective knowledge of that group is way beyond what most medical professionals can offer!

There are lots of other groups online that I have joined and participate in, too. I list many of them, plus additional resources in New Online Groups for Teens and Parents (and others, too!).

And to find locals in your own area, try posting in an illness group to find others who live locally. You can also ask your doctor (or the school counselor, for kids) to pass along your contact info to other people/families with similar diagnoses.

Finally, you can leave a comment here on my blog or follow me on Twitter, where there is a huge chronic illness community, or "like" this blog's Facebook page, where we have a kind and supportive community growing as well.

I cover all of this in more detail in my book, and I'll end here with one of my favorite quotes that also appears in my book:

"“Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one.” 

        --C.S. Lewis


Friday, October 29, 2021

GET (Exercise) Removed from UK M.E. NICE Guidelines!


Rejoice!! (cue sound of trumpets)

After years of work by patients, doctors, and advocacy groups, the UK's National Institute for Health and Care Excellence (NICE) Guidelines for M.E. have finally removed the harmful recommendation to force ME/CFS patients to exercise. Hurray!!

I haven't been posting here about every step of this arduous process because it's been a long and difficult one. But with much of the rest of the world acknowledging  a few years ago that the original studies that resulted in recommending Graded Exercise Therapy (GET) as a "treatment" for ME/CFS were seriously flawed and the advice debunked, I felt it was only a matter of time before the UK itself came to the same conclusion. It's been a long road, though. Briefly, NICE was ready to release the new guidelines (without exercise included) a couple of months ago and suddenly postponed its publication. Since then, they held stakeholder meetings, hearing from hundreds of ME/CFS patients, doctors, researchers, and advocates (and plenty of medical professionals supporting GET, as well). Thankfully, science won out in the long run.

Here are some highlights of the new guidelines. They:

  • Acknowledge that exercise, and specifically Graded Exercise Therapy (GET), can make patients worse.
  • Provide advice around energy management instead.
  • Downgrade Cognitive Behavioral Therapy (CBT) from a curative "treatment" to a support management tool.
  • Include specific recommendations for those with severe ME/CFS and for children and young people.
  • Perhaps most stunningly, the document acknowledges the prejudice, disbelief, and stigma that patients have endured for too long.

You can read a more complete summary of the process and the changes in this article from #MEAction

From the summaries I have read, I can't tell if the new NICE guidelines actually include any real medical treatments, like treating Orthostatic Intolerance, correcting sleep dysfunction, treating underlying infections, or treating immune dysfunction. The #MEAction summary does note that the section on research leaves out a lot of the latest research on causes, underlying physiology, etc. so I suspect the guidelines do not provide much in the way of specific treatments.

However, ME/CFS patients in the UK will no longer be forced to exercise, and ME/CFS clinics there will be allowed to offer a broader range of services, support ... and hopefully real medical treatments, too. They will no longer be limited by the old NICE guidelines which only allowed GET and CBT.

The impact of this wonderful news is not only confined to the UK, either. Unfortunately, over the past decades, many countries, doctors, and hospitals (including some of the most prestigious medical centers in the U.S., like Mayo and the Cleveland Clinic) have followed the UK's guidelines, so hopefully, this will put a stop to that also. The U.S.'s Centers for Disease Control (CDC) removed recommendations of GET and CBT from its own website guidelines, soon after the data emerged that they were harmful.

This is great news! It came about thanks to the tireless work of many, many people in the UK and beyond who deserve our gratitude. Hopefully, this is the beginning of a huge change in treatment protocols for ME/CFS patients in the UK and beyond.

NOTE: When I refer to "real medical treatments," I'm including many of the treatments that have helped my sons and I to improve our functioning and quality of life and live more active lives again. Read more about these treatments in the tab on this blog, Effective Treatments for ME/CFS.

And for more detailed guidelines on testing and treatments to share with your own doctors, refer to the documents from the U.S. ME/CFS Clinician Coalition, linked to in this post on New ME/CFS Testing and Treatment Guidelines.

Tuesday, October 26, 2021

TV Tuesday: Only Murders in the Building

Way back in my Summer TV Preview at the start of July, I mentioned a new show I was really looking forward to, even though it wasn't due to start until the end of summer. Only Murders in the Building has a cast of comedy gold, so I had high expectations ... and they were exceeded! My husband and I both enjoyed this murder mystery-comedy-drama and were disappointed when it ended.

In New York, there's a fancy apartment building called The Arconia, whose residents include celebrities and other successful people (to varying degrees). Typically, its residents keep to themselves, but now someone in their building has died, under suspicious circumstances. At first, police determine that Tim Kono's death was a suicide, but it's not that clear-cut. The building is cleared while the police investigate, and three very different residents end up waiting in the same neighborhood restaurant together. They discover that all three of them are serious fans of a particular true-crime podcast, and they end up discussing the ins and outs of that case in depth. Charles, played by Steve Martin, is a somewhat stiff and pompous guy who used to be an actor. In his best-known role, he played a detective on a cop show for years. He vaguely knows his neighbor, Oliver (played by Martin Short), who works as a director of plays in New York. Before the death in their building and their meeting in the restaurant, neither of them knew Mable, played by Selena Gomez, but the three of them quickly bond over their love of the true crime podcast. When they return to the building and begin to find clues suggesting that Tim's death might not have been suicide, they decide to start their own true-crime podcast, Only Murders in the Building, investigating on their own and reporting to their followers. Detective work, suspense, and hijinks ensue!

A TV concept created by Steve Martin and starring himself and Martin Short? With Selena Gomez as their young, much cooler partner? I'm in! This unique show really has it all. It's a murder mystery with plenty of plot twists, surprises, and suspense. It's also very, very funny, with comedy royalty (and best friends) Steve Martin and Martin Short at the helm, with great chemistry with their co-star Selena. And surprisingly, it is also warm and touching, as the three loners begin to get to know each other, eventually reveal their secrets, and develop a real friendship. Other big stars like Nathan Lane appear in the story, too, much to our delight. We just loved everything about this show and enjoyed every episode. Our only complaint? It was over much too soon! But good news: season two is scheduled for release in 2022. We can't wait to see what happens next.

Only Murders in the Building is a Hulu original, so it is available exclusively on Hulu.


 

Friday, October 22, 2021

Top Ten Posts from the Past Month


It's been another rollercoaster week of highs and lows - whew. After a month-long crash, I finally had a few good days earlier this week! Aches gone and able to be active just in time for our 2-day camping trip. You can see photo and video highlights on my Fall Getaway video. But, yesterday, I hit bottom again - horrible aches and sore throat, out of the blue. Even worse this morning--had to cancel going to see Hamilton with my two closest friends (who I haven't seen in months!). Pretty bummed out but settled into a rest day on the couch.

Since I don't have the energy for a new post today, I thought I'd share the 10 past blog posts that got the most visits this past month. It's a mixture of older, popular treatment posts plus inspirational posts plus recent updates (and one head-scratcher!). My top 10 blog posts this past month:

  • Opinions and Editorials on the New Name & Criteria - this is a post from 2015 that is not very relevant anymore, so I have no idea why so many people looked at it this past month! If you're interested in some history, this post describes the "new" name, SEID, for ME/CFS, which never really caught on.
  • News from Our House: Ups and Downs - this recent post from last month describes more of my recent rollercoaster struggles with recurring relapses, and what helped, as well as my son's wonderful improvements.
  • Heart Rate and Post-Exertional Crashes in ME/CFS - this perennial favorite post, written in 2011 and just updated last year, is all about how heart rate can help you to predict (and prevent) post-exertional crashes, including how to calculate your limits and tips on choosing the right heart rate monitor.
  • Treating Yeast Overgrowth/Candida - another popular older post that gets a lot of attention because yeast overgrowth is very common in ME/CFS and related illnesses due to our immune dysfunction--and it can make you feel awful, so treating it often improves many symptoms!
  • The October Slide: ME/CFS and Infectious Triggers - popular at this time of year for obvious reasons, this post explains how the immune dysfunction of ME/CFS makes us susceptible to infectious triggers and how to prevent the downward slide that is common in fall and winter.
  • Imunovir and Inosine for Treating ME/CFS - closely linked to that last post, inosine helps to normalize the immune system and has had a huge positive impact on my son and I--inexpensive and readily available, it's one of the top treatments that has helped us over the years.
  • Increasing Glutathione in ME/CFS and Related Illnesses - again, closely linked to those last two posts, glutathione is essential for energy, detox, and ... healthy immune function. It's another simple, inexpensive treatment that has greatly improved our ability to function and reduced crashes & infections.
  • Immune System Abnormalities in ME/CFS - another post that is part of this grouping on treating immune dysfunction, read this one first to better understand how the immune system in ME/CFS is dysfunctional.
  • Mast Cell Activation Syndrome (MCAS) and ME/CFS - a different avenue of treatment to consider for ME/CFS and related illnesses, like Lyme disease, POTS, EDS, and fibro. MCAS is very common in these illnesses and is often easy to treat with inexpensive and readily available treatments.
  • Weekly Inspiration: A Day in My Life - I made this video to show what a typical day is like in my life with ME/CFS and Lyme. I made it on a day when I was doing pretty well, which was most days until last year when this series of relapses began. I tried to be honest and open and share the realities of my life with chronic illness, including how treatments have helped me.

Those were the 10 blog posts most visited here in the past month, so I hope those keep you busy while I work on recovering! 

As always, please share your thoughts and your own experiences in the comments or any questions you might have.

Sunday, October 17, 2021

Weekly Inspiration: Rejuvenating Time Outdoors


Hi, all! The blog has been quiet this week because my laptop is at Apple being repaired - AGAIN! For the second time in a year and a half, the display/screen died. Apple products are normally pretty reliable, but I think I got a lemon this time!


So, I am limping along on a 15-year-old MacBook (which, by the way, is still in excellent shape!), using ancient browser software that won't even let me access the YouTube site! So, I am limited, to say the least.

The timing is good, though, because we are heading out today for a much-needed break, a short camping trip to a local park. That means being off-grid for me anyway! And hopefully, when I return, there'll be a message from Apple telling me by laptop is ready to be picked up.

In the meantime, with limited resources (and time), I will share some posts I've previously published on the topic that is foremost in my mind today: spending rejuvenating time outdoors. I wrote exactly what I am thinking about today in this Weekly Inspiration post about a year ago, Outdoor Living. In fact, we had just returned from camping at this same park and in the exact same site we will be on this week! So check out the post, loaded with helpful tips and gorgeous outdoor photos (just looking at photos of nature has been proven to provide mental and physical health benefits!).

Our favorite water-view campsite!
 

The scientific studies proving that are explained in my article, The Restorative Power of Nature, which is reprinted in full in the linked post. That article also includes ideas on how you can enjoy nature, even if you are homebound or bedridden!

I also made a video on the Health Benefits of Spending Time Outdoors, but as I said, I can't access YouTube right now to give you a direct link or include the video here. If you are interested, you can visit my YouTube channel, click on Playlists and then the Chronic Illness Playlist, and you'll find all of my chronic illness videos, including Get Out! about how to spend time outdoors or benefit from nature, regardless of your limitations.

 

So, we're packing up the camper and heading out after my nap! I hope you find a way to enjoy the benefits of nature this week, too!

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?