Chronic Illness Vlog: Highs and Lows

I posted a chronic illness vlog from last week, showing an honest view of my life with chronic illness. And, wow, last week was one of extremes! I went from crying on the couch, wracked with flu-like aches, to the euphoric victory of attending my 40th (!) high school reunion and the challenges of traveling to spend time with family on a long holiday weekend.

You can watch the video on Youtube or watch here:

Yes, it was one of those weeks that felt like a rollercoaster, one that jerked me from very high highs to extremely low lows, often with no transition in between. As you can see, I was feeling optimistic when I recorded the last segment on Monday this week, but--alas--that was short-lived. By Wednesday, I was back to crying on the couch, with horrible aches, hitting bottom once again. After my husband left to go to the store, I opened the refrigerator to get some water, and the bottom rack in the door pulled apart, spilling all the contents onto the floor. That did me in. I collapsed in a heap in front of the open fridge and sobbed my eyes out. It was just one of those "last straws," know what I mean? I eventually pulled myself together, put everything back in the fridge, and huddled down under the blankets on the couch to watch two old episodes of Grey's Anatomy (my happy place). My wonderful husband said, "you're not even attempting dinner tonight," and took care of it entirely. 

Today, I am feeling better emotionally, though still achy. I scheduled a phone appointment with my ME/CFS specialist for next week, so I'm hoping she has some ideas to calm down my activated immune system. In the meantime, I am resigned to staying horizontal as much as possible and listening to my body.

How was YOUR week?

How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Giving Tuesday 2023: Help ME/CFS and Long-COVID Patients

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday and Cyber Monday. Every little bit counts, even if it's only $2 or $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 years ago with OMF (see below) so that $5 was automatically donated from me each month, and last year, I increased it to $10 a month. I don't have to think about it or do anything else, and my donation now adds up to $120 a year! It only takes a few minutes to either donate or set up recurring donations. And every little bit counts.

And there are some amazing deals in place right now that will double or even triple your donation, turning $10 into $20 or $30! All of the groups listed below that do ME/CFS research and/or support ME/CFS patients are now also helping those with long-COVID.

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:

• Open Medicine Foundation - #TripleGivingNovemberOMF - Thanks to generous gifts by multiple donors, every donation made in November is TRIPLED, up to $500,000! It's a great opportunity to make your money go farther! This organization does some outstanding groundbreaking scientific research into causes, treatments, and cures for ME/CFS and long-COVID, with doctors, scientists, and researchers in Collaborative Centers across the globe. You can read about their End ME/CFS Project here.
  
• Solve ME/CFS Initiative - Donations made to Solve ME in November will be doubled, thanks to donations from their Board of Directors! And today only, on Giving Tuesday, another generous donor has offered to also match donations up to $25,000, so donate today and your money will be quadrupled! This organization does a lot of work in both ME/CFS and long-COVID research and advocacy. You can read their newsletters here, including research updates and read more about their Long-COVID Initiative here.
  
• Simmaron Research - Donate through their website and you can read all about their research projects here.
• #MEAction - This organization is focused on advocacy and outreach rather than on research, and they are doing some amazing work with patients, communities, and governments! For instance, gaining Congressional support in the U.S. is absolutely essential to increasing research funding. Read more about them here, ways that anyone can help and take action, and you can donate to the organization here.
  
• ME Association - This UK organization supports patients and research in both ME/CFS and long-COVID. Here's more about the organization and what they do, plus their current research projects.They also have an online shop featuring all kinds of books, t-shirts, cards, and more. And today through December 5 is their Christmas Challenge Big Give, with your donation matched.
  
• Emerge - The primary ME/CFS association in Australia provides research and patient support and advocacy. They are now also helping to support the Australian Collaborative Research Center of Open Medicine Foundation. Donate here.

Host Your Own Fundraiser:

To have an even bigger impact on these organizations, you can host a Fundraiser on Facebook. I have hosted fundraisers on Facebook for my birthday every year, 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, and share your fundraiser with Facebook friends.

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. You can also earn by using the site to search. And use that iGive link I posted in the previous line, and we'll earn an extra $5 for Solve ME!

To show you how well this works, my iGive page currently shows that I have selected Solve ME as my cause, that I have personally earned and donated $305.15 to them, and that they have earned a total of $6602.45 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 and got rid of its own charitable donation program this year, but you can find most other online stores on at least one of these.

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

 

Let me know if you know of other organizations or other ways to give that I missed here.

You can leave a comment below.

You can also connect with me on Facebook and Twitter.

 

Book on Sale for Black Friday!

I just wanted to let you know that my book is on sale, now through Cyber Monday, November 27. All e-book formats are on sale, and the paperback when bought through Amazon (sorry but I don't have control over pricing of the paperback through other online and in-store retailers but it is available everywhere).

About the book:

"Whether you are in the early days of living with chronic illness or have been at it for years (or decades), there are always challenges in living a life framed by limitations and restrictions, where isolation is a common issue. This guide provides inspiration, advice on emotional coping, and guidance on living your best life with chronic illness from someone who’s been there. Though it seems impossible at first, your life will eventually settle into a new normal, and while that life may be different than the one you had planned, it can still be a vibrant, fulfilling life based on strong relationships, a healthy emotional state, and finding joy in every day. The emphasis in this book is on LIVING your life, not just enduring it.

 

From Sue Jackson, the author of the popular and award-winning blog Live with ME/CFS, comes a book to help you live your best life with chronic illness. Based on Sue’s over 20 years living with chronic illnesses in her own family, writing her blog, writing articles on chronic illness, and leading multiple support groups, she provides support and practical advice you can use."

 

A few of the many 5-star reviews:

Loved It “This book was eye opening and helpful. I am recently diagnosed with Lupus and struggling to understand it all. This book helped me to understand my life isn't over and I don't need to feel guilty when I can't do all the things. Instead I just need to change how we do things such as have movie nights etc.”

 

A Must Read for Those Struggling with Chronic Illness and Their Families - There is nothing more desperate than trying to find someone who “gets” it! Chronic Illness is real and the emotional toll it takes on the patient and family is tremendous. Looking for someone to help or at least understand is almost impossible. This book gives hope to those suffering from chronic illness by letting them know they are not alone, that there is help out there, and there are things to do to get you through those dark and scary times. There were very limited and often outdated books available to help my family during our initial struggle dealing with a child with a chronic illness. In the beginning life was a lonely and living hell. I was blessed to find Sue and a wonderful group of people online, who shared similar experiences and showed us how to survive in our new “normal”!” 

“Encouraging - Chronic illness is difficult to say the least. The daily challenges you face are often so debilitating. Suzan does a wonderful job sharing her and her family's challenges and triumphs living with chronic illness.  What a comfort to know there are people who understand and really "get" what you’re going through. Having support makes a world of difference when you are battling an illness and is essential in moving forward and living your best life.  I recommend this book if you have a chronic illness or if you know someone that does.” 

 

"Must Read

I am only half way through and it has saved my life. Seriously.”

 

You can read more about the book and see more reviews, plus a list of links for finding the book (e-book and paperback) through all the major outlets and formats here.

 

If you're in the US, I hope you're enjoying the holiday weekend!

 

Chronic Illness Holiday Gift Guide

Whether you are looking for gifts for someone else in your life who lives with chronic illness or other health problems or you could use a little self-care yourself, there is something here for everyone on your list! Choosing a gift for someone who's chronically ill and who is limited or even housebound can be tricky, but here I've collected a bunch of great ideas, many of them tested in our own home, sure to please the Spoonies in your life but also healthy friends & family. Shop for someone else, gift yourself, or add these to your own wish list for your family! And if you have other ideas, please let me know in the comments below.

Comfort and Care

Super Comfy Soft Blanket:

When I am crashed, all I want is to be surrounded with super-soft comfort, even when it's warm out! Just feeling that soft, smooth texture is very comforting. Here are several different blankets, all very soft and cozy, in varying weights.

Lightweight Blanket - This lightweight plush blanket is super soft. We have a bunch of these in our family room, and we use them around a campfire, too.

Heavier/Warmer Blanket  - Super soft outer layer, plus a sherpa lining, for extra warmth and two different textures.

Fuzzy Faux-Fur Blanket - This one is for people who appreciate ultra plush, fuzzy comfort (like my son!)

Weighted Blanket - For those who get comfort from a weighted blanket, this one also features a super-soft feel, with plush on one side and sherpa on the other.

Fuzzy Faux-Fur Blanket

 

Back Cushion for Support:

Lumbar Support Back Cushion - Life-changing for me! I got this gel-filled lumbar cushion for the car when I was having low-back pain but discovered it works just as well in my recliner to support my back and prevent pain. Also works for couch, bed, chair, or wheelchair.

Prop-Up Pillows

When you spend a lot of time in bed or on the couch, you need to prop yourself up sometimes (like to eat!). Here are some great options to support your back and keep you comfortable.

Adjustable Bed Wedge Pillow - This simple wedge pillow adjusts to multiple positions to support you while sitting or lying down

4-Piece Orthopedic Pillow Set - This 4-piece ergonomically-designed set can be used in many different ways to provide just the right support for your position (and there's currently a $10 off coupon available).

4-Piece Pillow Set

Comfy Slippers

I don't know about you, but with all the time I spend at home, the "shoes" I wear most are slippers, and they wear out. Because I wear them so much, I prefer the kind with good arch support or memory foam and durable soles that can go outside (I'm wearing them now as I type on my deck!).

Cotton Memory Foam Slipper - These inexpensive, lightweight but well-made slippers feature breathable cotton uppers, memory foam insoles, and nonslip rubber soles, in a variety of colors.

Orthotic Slippers with Arch Support - For those with plantar fasciitis or other foot pain, these slippers come with orthotic insoles for arch support and comfort (and still not very expensive and they look nice!).

Deluxe Orthopedic Slippers - A bit more expensive, these slippers (and other styles) from Orthofeet provide orthotic insoles, cushiony insides, and warm faux fur.

Convertible Indoor/Outdoor Slippers - These convertible slippers can be worn as clogs or with a back and come in unisex sizes, with a nonslip sole that can go outdoors.

Orthotic Slippers with Arch Support

Pajamas/Loungewear

If you spend a lot of time in pajamas or loungewear, they might as well be super comfortable.

Cozy Long-Sleeve Shirt and Joggers - These warm, ultrasoft pajamas from Eddie Bauer are comfy all over and look nice enough to be seen in! (a similar set for men)

Breathable Bamboo Pajamas (long) - I don't know about you, but I'm always overheated (my son is, too). This summer, I finally tried bamboo pajamas and love them! Super soft and lightweight but breathable, they are perfect for those who suffer night sweats or get overheated easily (similar pajamas/loungewear for men).

Breathable Bamboo Pajamas (short) - If you're looking for something even cooler, these are made of the same lightweight, breathable bamboo fabric, but in a shorts style (here are similar ones for Men).

Bamboo Pajamas

Ease the Pain and Fatigue

Ice Packs

Ice packs come in all shapes and sizes and have many uses for those with chronic medical conditions.

Large Flexible Ice Pack - I bought these because they were recommended when I went to physical therapy (the same kind they use professionally), and I can see why! They come in various sizes (I like the large one for back, shoulders, neck), are flexible, and comfortable. I just keep mine laid flat in the freezer, ready when I need it (note these can also be used as heating pads - keep one in the freezer and one out, ready to microwave).

Migraine Head Ice Hat - When you get a migraine or other severe headache, sometimes nothing seems to help, but ice/cold can do wonders to reduce swelling and inflammation, constrict blood vessels, and provide relief. I used to have to awkwardly wrap ice packs around my head and neck, but now you cam get one like this, made specifically for your head to wrap all the way around. Ahhh!

Migraine Ice Hat

 

Heating Pads

I used to use old-school electric heating pads, until my dermatologist said I had sun damage on my lower back. When I said that part of my body hadn't seen the sun in many decades, he explained that electric heating pads could damage the skin just like the sun. Since I lost my dad to melanoma, I was motivated to find an alternative! Again, I took the recommendations of professional physical therapists, who use gel-filled heating packs. They're not only safer and won't damage skin, but this kind of moist heat better penetrates deep into the tissue where it can do the most good.

Rectangular Two-Sided Hot/Cold Pack - While there are lots of gel heating pad options, this one is my favorite. It's inexpensive, well-made with sealed outer edges (I had a few that leaked after multiple microwaving before this one), and has two different surfaces. When it's very hot, just out of the microwave, I use the cloth-covered side and switch to the smooth side as it cools down a bit. It can also be used as a cold pack, but I reserve this one just for heat. I bought one for my step-mom for her birthday last year (she has chronic pain), and she said it was the best gift she'd ever gotten!

Aromatherapy Neck and Shoulders Hot/Cold Pack - This one is specially designed to wrap around neck and shoulders, which can be hard to get to with a rectangular pad. It's infused with herbs for aromatherapy, too.

Hot/Cold Pack

 

Migraine Glasses

With Lyme disease, my son often gets crippling migraines with severe light sensitivity that causes him to don sunglasses and hide in his room.

Anti-Migraine, Light Sensitivity Glasses - These can help when migraines hit but they can also help to prevent migranes and help with general light sensitivity. Bonus: they also block blue light from screens that can disrupt your sleep (see below). 

Migraine Glasses

 

Compression Garments

Anyone with any kind of Orthostatic Intolerance (OI, including POTS), which is everyone with ME/CFS and many with long-COVID, Lyme, EDS, and fibro, will benefit from compression socks and other garments that gently help to improve blood flow and prevent blood pooling in the lower extremities. And they now come in lots of stylish options--these are not your Grandpa's compression socks!

Knee-High Light Compression Socks (Women) - Made for nurses (who spend a lot of time on their feet), these light compression socks come in lots of fun styles.

Unisex Light Compression Knee-High Socks - Rated light compression (15-20 mmHg), these fit men and women and come in a variety of styles.

Inisex Moderate Compression Knee-High Socks - These provide more compression, rated moderate (20-30 mmHg) and come in packs with lots of wild designs--you might as well enjoy them!

Women's High-Waisted Compression Shorts -  Studies show that compression shorts that cover the waist and pelvic area can help OI by prevent blood pooling while sitting or standing. Most compression shorts sold as shapewear or athletic wear (like these) will do the trick. Bonus: These have high waists and pockets and could be worn under clothes or on their own. Similar style for men.

Women's Light Compression Tights - Provides compression from the waist down to ankles. And a similar style for men.

Moderate Compression Tights for Women - These provide moderate compression (20-30 mmHg). Similar style in unisex sizing.

Moderate Compression Socks

Stay Hydrated! 

Hydration is so important, for treating Orthostatic Introlerance (OI), which is partly due to an inability to hold onto fluids, and for general health and well-being. There are all kinds of great water bottles and other designs available now to keep your drinks cold (or hot in winter). I carry my water bottle everywhere with me, and my son fills his with electrolyte solution (made with GU Brew tablets).

Plastic Water Bottle with Chug Lid and Carry Handle - I prefer bottles without straws because I find them difficult to clean. This BPA-free bottle comes in three different sizes (go for the 32 or 40 oz!) with an easy-drink lid, and it's dishwasher safe.

Leak-Proof Bottle with Spout Lid- This one comes in 22 and 32 oz sizes, is dishwasher safe, and has a spout lid. Comes in lots of colors.

Insulated Stay-Cool (or Hot) Bottle - With double-walled insulation, this bottle keeps your drink cold (or hot) for hours and comes in larger sizes, plus three different lid styles.

Neoprene Insulated Carry Holder for Water Bottle - I want this! Comes with a carry strap so it's easy to bring your water bottle wherever you go, and the Neoprene holder keeps it cold (and stops it from sweating).

Insulated Bottle

 

Work or Play

Whether you're trying to work from home or just enjoy some fun, these items can help to support you and make it easier to both work and play.

Lap Desk 

I'm always looking for a good lapdesk that allows me to use my laptop and/or write while in my recliner, on the couch, or in bed.

Lightweight Cushioned Lap Desk - this simple, inexpensive lap desk has a cushioned bottom for comfort, with space for air flow to keep your laptop from overheating, and a ridge to keep it from sliding. I added this to my wish list!

Lap Desk with Mouse Pad - This slightly larger lap desk has those same features, plus a mousepad and a holder for your phone.

Lap Desk with Adjustable Legs - I don't usually like lap desks with legs because they're usually too high for me, but this one has adjustable legs and a bunch of other useful features.

Lightweight Cushioned Lap Desk

 

Holder/Stand for Tablet or Book

Whether you're trying to expend as little energy as possible or have pain issues in neck, arms, or shoulders, some sort of holder or stand can help to support a tablet or book.

Flippy Soft Multi-Angle Pillow Stand  - Ok, sure I love the name, but this one also seems to be very practical for anyone bedridden or couchbound, with different viewing angles on each side and a soft surface. When my mom said a large hardcover book she was reading was too heavy for her injured shoulder, I got her something similar to this.  

Standing Tablet/Book Stand - This stand allows you to read or use a tablet hands-free and without anything on top of you. It stands on the ground but is very adjustable, whether you're in bed, on the couch, or in a recliner. I gave this to my step-mom for Christmas last year when she said she couldn't read anymore because of her chronic neck pain. This allows her to put the book or tablet right at eye level, no matter where she's sitting. She was thrilled! 

Flippy

 

Blue Light Blockers

As I explain in my post on Correcting Sleep Dysfunction, sleep experts all advise avoiding screens in the two hours before you go to sleep at night. Blue light suppresses melatonin, telling your body it's wake-up time! But what if you enjoy watching a show or movie before bed? If you're using a laptop, tablet, or phone, you can turn the blue light off at night (look for Night Shift on Apple devices in the Display and Brightness option under Settings). My iPad is set to turn off blue light at 9 pm every night, for times when I'm using it as an e-reader. There are also several gadgets that can block blue light. 

Blue Light Blocking Glasses - These have clear-looking lenses and come in sets of two to four pairs, in a wide variety of sizes, for both men and women. Perfect for watching TV.

Blue Light Blocking Reading Glasses - If you are of a certain age and looking for blue-light blockers for when you're using your phone, tablet, or other device up close, these combine blue light blocking with reading glasses, available in different strengths. They come in packs of five, so you can leave them in different rooms of the house, and several different styles.

Blue Light Blocking Screen Protector for MacBook laptops - If you'd prefer not to wear glasses, you can get a blue light blocker that covers your whole screen. This one has various sizes for different MacBooks. This one fits certain iPhones. If you scroll down a bit on either page, you'll find other options for different types, brands, and sizes of devices.

Audio Book Membership

Many people with chronic illness struggle to read books in print but can still enjoy audiobooks. I'm a huge fan of audiobooks and listen to all kinds! If you also struggle with longer or more complex audiobooks, try middle-grade or teen/YA books on audio. This blog post, The Joy of Reading, is excerpted from a chapter in my book and includes some great tips for enjoying reading, with lots of recommendations! An audiobook membership makes a great gift for people who love books, whether they can manage reading in print or not. 

Audible - The biggest and most well-known source for audiobooks recently is this subset of Amazon, with two different membership options.

Libro.fm - With this source for audiobooks, every purchase helps to support independent bookstores (one you select or all of them).

 

Sweet Dreams

Since we spend so much time in bed but are still always exhausted, we can use all the help we can get! Check out my tips in How to Nap, and also improve your sleep quality with the treatments in Correcting Sleep Dysfunction. These all make great gifts for your favorite spoonie (or yourself).

Eye Mask and Ear Plugs

As I explain in those blog posts linked above on napping and sleeping, keeping the sleep environment--whether at home or away--cool, dark, and quiet is essential. An eye mask and ear plugs can help.

3D Light-Blocking Eye Mask - This soft, spongy eye mask reduces pressure around the eyes and block all light.

Silk Eye Mask - Silk is gentler on the skin than other materials, and as a natural fiber, it is also breathable so should help to prevent overheating.

Weighted Lavender Aromatherapy Sleep Mask - Personally, I hate scented stuff, but my mom loves her weighted lavender sleep mask, and I know many people swear by aromatherapy (and lavender is a sleep aid). With this one, you can remove the inner bag filled with lavender to use it alone and/or heat it in the microwave.

Silicone Ear Plugs - Forget the old foam-style ear plugs; silicone ones work so much better! To block out street noise, household noise, a partner's snoring, or so you can nap in public (like on an airplane), these are a game-changer! Great stocking stuffer or Hanukkah gift.

3D Eye Mask

 

Soft, Warm Socks

As I explain in my How to Nap post and video, studies show that warm socks help you fall asleep more quickly--it's science! I wear these to bed at night and pull them over my regular socks at naptime. They are lightweight but warm and super-soft:

Women's Fuzzy Socks - These come in sets of 5-6 pairs, in a wide variety of colors. Scroll down for similar socks in different designs.

Men's Fuzzy Socks - Different designs are available, and these come with non-slip grips on the bottoms for wearing outside of bed.

Women's Fuzzy Socks

 

Room-Darkening Curtains

While an eye mask can help, nothing beats a really dark room when you need good quality sleep. Light tells your body to stop making melatonin, so block out as much light as possible with room-darkening curtains. My son and I both have these in our bedrooms, and my husband calls our bedroom "the cave." I love it.

Light-Blocking, Energy Smart Curtain Panels - These will not only darken your room effectively but also help to block noise and lower energy bills! We have them in our bedrooms but also in the family room, where the afternoon sun heats things up in the warmer months. They come in 15 different colors and 34 different width and length options and are easy to install on any curtain rod. And there's currently a 10% off coupon, too!

Light-Blocking Curtains

 

Lots of great gift ideas here for friends, family, or yourself!

What are YOUR favorite gifts to give/receive?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Clinical Trial for 2 Treatments for ME/CFS & Long-COVID

This is such exciting news for the ME/CFS and Long-COVID communities! Open Medicine Foundation (OMF) is sponsoring a scientifically valid clinical trial of two medications, low-dose naltrexone (LDN) and Mestinon, that are commonly used off-label to treat ME/CFS and long-COVID (off-label means used for purposes other than for what they were FDA-approved).

Dr. David Systrom, MD, is the Director of OMF's Harvard Collaborative Research Center, and an exercise specialist who has seen many ME/CFS and long-COVID patients to diagnose, study, and treat exercise intolerance. He pioneered the use of Mestinon, a cholinergic drug used as a muscle strengthener for other purposes, to treat ME/CFS and long-COVID.

Naltrexone is a very old medication (approved for use in alcohol and drug addiction) that has been used for decades in tiny doses to treat various immune disorders; it helps to normalize the immune system (acts as an immune modulator). There are many dozens of studies on its use in a wide variety of diseases ... but, as it often the case, none specifically focused on ME/CFS. However, ME/CFS expert clinicians have been using LDN for decades, and feedback from patients has shown that it often helps. My son and I have been taking LDN for 16 years, since 2007.

The real exciting news is that this clinical trial will include 160 people and will be a randomized, placebo-controlled, double-blind study. That's the gold standard in science and medicine and will allow the study results to be published in peer-reviewed medical journals, where it will be widely available to the entire medical community. That would be a game-changer for all patients, allowing us to show any doctor the study and ask for the treatments.

In this short video, Dr. Systrom explains (in layperson's terms) the details of the trial, why they chose these two treatments, what he's seen in patients, and what the impact of the study could be. You can watch the 16-minute video on YouTube or here:

This is the start of a new era for ME/CFS amd long-COVID!

What are your thoughts on this new clinical trial?

Have you tried either of these treatments?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog: Crash! A Mostly Horizontal Week

My latest chronic illness vlog is now available. I record these vlogs over the course of a full week, to show an honest view of my life with chronic illnesses, including ME/CFS and Lyme disease. Last week (and continuing this week!), I've been struggling with a "mystery crash," a sudden worsening of my symptoms, especially flu-like aches. The aches are an immune sign that tells me my immune system is over-reacting to ... something. You can hear in the vlog as I consider various possibilities throughout the week. My best guess now is that perhaps yeast overgrowth/candida has flared up again, as it did this summer. 

You can watch the video on YouTube or here:

As an update, I did get the stronger antifungals from my doctor and started them yesterday, but I am still achy and horizontal. Fingers crossed I feel better for our Thanksgiving trip next week to visit family. 

Here are some of the topics and treatments I mentioned or referred to in the video (all of these links are also below the video on YouTube).

• ME/CFS and Infectious Triggers -how to prevent and treat worsening during fall/winter.
• Treating Immune Dysfunction - includes information both on improving immune function and on treating underlying infections.
• Inosine - an inexpensive supplement that helps to normalize the immune system.
• Effective Treatments for Yeast Overgrowth/Candida - a common problem in ME/CFS and long-COVID that can make you feel awful.
  
• Diagnosing & Treating Orthostatic Intolerance (OI) blog post
• OI Video
• Chronic Illness Tracking: How I Feel, Symptoms, and Treatments video
  
• Vitamin B12 - what it does, why we need it, plus types and forms that work best
• Increasing Glutathione in ME/CFS and Long-COVID
• Treatments: Tried and True & New Hope - Dr. Davis' very interesting 10-minute video on "Can ME/CFS Be Cured?" plus another article on treatments.

 

How are YOU doing? How was your week?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Movie Monday: Barbie

Now that Barbie is available on streaming, I wanted to review it here because it is such a fun movie! Forget any preconceived notions or even whether or not you like Barbie (or even the idea of Barbie) because this movie doesn't take itself too seriously and pokes fun at its own main character and the commercial world built around her. My husband actually went with me to the theater to see it, and we were both thoroughly entertained.

The movie opens with very stereotypical Barbie scenes: a pretty, pink, perfect world occupied by beautiful Barbies (and Kens). The houses, cars, and everything else look exactly like the Barbie accoutrements you may have played with as a child. But that perfect world comes to a screeching halt when the main Barbie, played perfectly by Margot Robbie, starts to see "the real world" creep into her life and asks her friends--during an epic dance party--if they ever think of death. She's advised to go visit Weird Barbie, played wonderfully by Kate McKinnon, who everyone who was ever a little girl will instantly recognize as the poor Barbie doll tortured by brothers, boys in the neighborhood, or even little girls themselves who just didn't fit the Barbie mold. Weird Barbie advises Barbie to go visit the real world to get some answers to her increasingly unsettling questions. She takes off in her pink convertible and soon discovers that Ken, played by Ryan Gosling, has stowed away. The two of them arrive in Los Angeles, with some epic, hilarious scenes of Barbie-world clashing with the real world. Word gets out that Barbie has escaped Barbie Land, and the executives at Mattel (all men, including Will Ferrell as CEO) turn to a lower-level employee named Gloria, played by America Ferrara, for help. Gloria has happy memories of her days playing Barbie, and her teen daughter, Sasha (played by Ariana Greenblatt), is much too cool for Barbie now. The two of them set out to set things right and find a way to send Barbie back to Barbie Land. Meanwhile, Ken, who has lived his life playing second fiddle to all the Barbies, discovers something called the patriarchy, and can't wait to get back home to tell all the other Kens. Eventually, Barbie and Ken both return to Barbie Land, but with new perspectives and some changes to their world.

Greta Gerwig, renowned for directing Lady Bird and Little Women, both directed and co-wrote Barbie, and brings her smart, feminist viewpoint to Barbie Land. This script is so clever and funny! I'd really like to watch it again because the writing and the set pieces are so chock-full of interesting, smart, funny things that I'm, sure I missed some of them. Robbie and Gosling are excellent as Barbie and Ken, and I loved Ferrara and Greenblatt in the real world. My husband did not play with Barbies as a kid (and instinctively doesn't like the whole concept since his name is Ken and he endured a lot of teasing as a child!) but found the movie entertaining. If you did play with Barbies as a kid, then there are a whole bunch of Easter eggs here you will recognize and delight in, including the outfits, accessories, and friends. Even if you aren't in the know, there are some real-world Barbie facts shown at the end, like explaining Michael Cera's hilarious role as Allan, a real-life short-lived toy introduced as "Ken's best friend." Gerwig has woven in smart, thoughtful concepts throughout, and you can see in the trailer below that the whole production is absolutely eye-popping. This original movie is eye candy but also so much more, with plenty of heart and thoughtfulness woven in among the nostalgia and fun. Highly entertaining.

Barbie is available to buy on several streaming services, including Amazon Prime. If $19.95 is too much for you (though it's reasonable if you watch with family or friends), and you still have a DVD player, try a Redbox kiosk, where you can rent the DVD for just $2.25.

ME/CFS Treatments: Tried & True and New Hope

I recently came across two interesting pieces--an article and a video--from ME/CFS specialists regarding treatments and even, potentially, the possibility of a cure. I wanted to share both with you here.

Tried and True

This blog post article was written by Dr. Eleanor Stein, who is both a patient of and doctor for ME/CFS. You can read her story and learn more about her blog here; her mission is to share science-based information on ME/CFS. This particular blog post is called A New 4-Step Treatment for the Severely Ill with ME/CFS, which she says comes from Dr. Dag Stola and his team at the Røysumtunet Hospital, a center for severe ME/CFS patients in Norway. Most of this "new" treatment plan was nothing really new but the basics that I've known (and used) for years. It's a short article you can read for yourself and share with your doctor, but some of the treatments included are:

• Hydration, with some specific products recommended (we like GU Brew)
  
• B1 - thiamine or benfotiamine (the one we take)
  
• N-Acetyl-Cysteine (NAC)
• Multi-vitamin (we take individual vitamins since we are high in some and low in others)
  
• Multi-mineral (we take individual minerals; the combo pills sometimes contain the wrong types)
  
• NADH (the one I just ordered)
  
• CoQ10 (I take this one - supposed to be better absorbed)(this one combines NADH and CoQ10)
  
• Methyl- and/or Hydroxy-B12 injections (more info at link)
  
• Low-dose naltrexone (though the doses recommended here are much too high for many ME/CFS patients) - more info at link.
  
• Low-dose aripiprazole

I've never heard of that last one, but my son and I have been using most of the rest for many years, and they do help somewhat. I've included links to my own blog posts, if you want more detailed information on any of those. Many of the supplements were mentioned in my post on preparing for COVID vaccines. I certainly wouldn't argue with any of these, but it seems to leave out a few things that have helped us the most over the years:

• Treating orthostatic intolerance (OI), beyond just hydration, which can only do so much on its own.
• Correcting sleep dysfunction - for us, this was absolutely critical. My son recently went through an insurance change/gap and ran out of his meds for correcting sleep dysfunction (not sedatives) and definitely noticed the difference!
• Treating immune dysfunction - this list does include low-dose naltrexone (LDN), but there are other ways to help normalize immune function as well. My blog post at the link also discusses treating underlying infections, which can be extremely valuable, depending on the patient.
  

So, it's an interesting list of treatments, though sort of an odd assortment, based on our experiences. I suppose if you are starting from no treatments at all, as so many patients are, then that's a decent starting point ... though I would tackle sleep dysfunction and OI early on, since they help with everything else. 

I did notice the inclusion of NADH on that list, something that I tried early on in my illness, almost 20 years ago, and had forgotten about. The blog post says the research is mixed on NADH but it does seem to help some patients, so I'm going to give it another try, starting next week.

New Hope

And for a completely different perspective, I was fascinated by this short, 10-minute video from one of the top ME/CFS researchers in the world, Dr. Ron Davis, whose son has severe ME/CFS (so he is highly motivated!). Some of this brief video went over my head--there is some scientific stuff in here--but it's very short, and I was interested to hear about some of this new research. Dr. Davis explains it for us laypeople. He also discusses how crashes keep the cycle going, which I found very thought-provoking. This brief talk is titled Is ME/CFS Curable? and Ron's conclusion was that yes, it probably is. You can watch the 10-minute video on YouTube or here below: 

 

Fascinating ... and this video definitely gives me hope for a better future for us all! And I've been thinking a lot about what Davis says about how crashes perpetuate the disease. Not really news, but he's got me thinking that I'm not resting enough. I've been stuck in a crash for more than a week, so today I am newly motivated to try to rest as much as possible and not push past my limits.

Which treatments have helped YOU the most?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

 

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

 

TV Tuesday: The Lincoln Lawyer

One of the shows my husband and I have been enjoying this fall is The Lincoln Lawyer, the latest adaptation of mega-best-seller Michael Connelly's books. We love the TV adaptation Bosch, featuring one of our favorite fictional detectives. The Lincoln Lawyer aka Mickey Haller was featured in a book I read this summer, The Night Fire, which included all three of Connelly's most famous characters: Harry Bosch, Rene Ballard, and Mickey Haller. Mickey was previously featured in a movie adaptation of The Lincoln Lawyer, played by Matthew McConaughey. In this new (2022) TV adaptation, there is a different twist, as the famous Lincoln Lawyer is given a Hispanic background.

As in the books, Mickey Haller aka the Lincoln Lawyer, played here by Manuel Garcia-Rulfo, is so-named because he runs his law practice out of his Lincoln Town Car, and he is a fervent idealist, fully believing in every person's right to a strong defense. He's also very, very good at his job. Two of the contacts in his phone are labelled Wife #1 and Wife #2. He's still in love with wife #1, Maggie, played by Neve Campbell, and they both adore their teen daughter, Hayley (played by Krista Warner). Wife #2, Lorna, played by Becki Newton, works as his office manager and legal assistant. She is dating Mickey's long-time investigator, Cisco, played by Angus Sampson. At the start of the first episode, Mickey finds out that a big-time lawyer who recently died left his entire practice and all his clients to Mickey, so the team moves into the fancy law office left to him, though Mickey still does his best thinking in the car. Also in that first episode, he successfully defends a young woman named Izzy, played by Jazz Raycole, and hires her to be his driver. The biggest and most infamous client he has inherited from the other lawyer is a tech billionaire named Trevor Elliot, played by Christopher Gorham, who's been accused of killing his wife and her lover. That big case is the focus of much of season 1, while Mickey and Lorna sort through the practice and clients left to him. As season 2 begins, Mickey is focused on clearing the name of a man who was unjustly accused of murder, serving time in prison after Mickey lost his case. That loss and imprisonment of an innocent man weighs heavily on Mickey. He also ends up defending a woman accused of murder, whom he recently slept with.

My husband and I are halfway through season 2 and are both really enjoying this show. The casting works perfectly, and Garcia-Rulfo is excellent as Mickey. The mysteries/cases he's working on are twisty and surprising, with lots of suspense. Alongside the tension, there is plenty of humor, which we always appreciate in a TV show or movie, and even a bit of romance as Mickey tries to move on while still caring so much for Maggie, and Lorna and Cisco grow closer. We usually juggle a dozen or so shows at a time, and when I recently asked my husband which one he's enjoying the most, without hesitation he answered, The Lincoln Lawyer. It's a great adaptation of the novels of one of our all-time favorite mystery/suspense authors. Now, I'm waiting for an adaptation of the Rene Ballard books!

The Lincoln Lawyer is currently available with subscription on Netflix and Apple TV, as well as for a fee on various other services, including Amazon Prime ($1.99 an episode; first episode free).