I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Tuesday, February 27, 2018
TV Tuesday: The Marvelous Mrs. Maisel
Rachel Brosnahan stars as the title character, Miriam "Midge" Maisel, in 1950's NYC. In the first episode, we see her fairytale romance and perfect Upper West Side life shattered when her husband Joel, played by Michael Zegen, suddenly leaves her for his secretary. Joel has been trying - unsuccessfully - to do stand-up comedy at night. He works in business, but comedy is his dream, which is destroyed when Midge finds out he's been stealing his material. Midge has been the perfect 50's housewife, fully supporting him by coming to all his shows and taking copious notes on what works and what doesn't (in addition to caring for their two young children and the house). Stunned by Joel's departure, Midge stumbles drunk into the dive bar where he often does stand-up and ends up on stage in her nightgown. She is actually very funny and the crowd loves her - but she also gets hauled off by the police and arrested. It's a rough start, but Midge is hooked. She realizes that comedy is actually her dream...and that she might even be good at it. The manager of the bar, Susie Myerson (played by Alex Borstein), is won over by Midge's raw talent, and the two pair up, with rough-talking, masculine-dressing Susie acting as Midge's new manager.
That's the basic plotline of the show, as Midge tries to both put her life back together and launch a stand-up career, but this show is so much more than its original plot! The cast are all outstanding and hilarious, with Tony Shalhoub as Midge's straight-laced father, and Marin Hinkle as her controlling mother, to name just a few. The scenery, costumes, and atmosphere are also amazing - a brightly-colored, vibrant recreation of 1950's NY. It makes for a visually stunning show that is a lot of fun to watch. Some scenes are almost musical-like, without the singing, with a classic 50's song playing in the background as Midge struts down the street or takes on her new job in a colorful department store (you can check out the music from the show here). Midge is likable, and I find myself rooting for her to bust those 1950's social norms and make it as a comedian, so the show has warmth, but it is also very, very funny. All in all, The Marvelous Mrs. Maisel is an entertaining visual spectacle that will make you laugh out loud.
The Marvelous Mrs. Maisel is an Amazon original show, so it is available streaming exclusively on Amazon. And it has been approved for a second season, so there is more Midge to come!
Here is a trailer of the show:
Sunday, February 25, 2018
Weekly Inspiration: Emotional Agility
She talks about the need to recognize and feel your emotions - that's the only way to move forward. When she mentioned the pressures of our society to "stay positive," it reminded me of the early years of my illness, when my family was focused on "cheering me up" and "getting my mind off my illness" when what I really needed was simple recognition and acceptance of what I was going through.
We all need to grieve our losses. I write often about finding joy, being grateful, and taking positive steps, but this doesn't mean ignoring the darker feelings - you have to allow yourself to feel anger, sadness, resentment, and other difficult emotions in order to move past them.
Incidentally, today is my own father's birthday. He died 2 years ago of melanoma. I miss him every single day, but he's really been on my mind even more this week, when I would normally be picking out books I think he'd like or choosing a new golf course for him to try.
There are all kinds of grief - plus other difficult emotions, too. David talks here about emotional agility - being able to really feel all of our emotions, positive ones and darker ones - and it's a good lesson to remember.
Have you allowed yourself to grieve what you have lost? Have you been able to truly feel those emotions and move forward?
Thursday, February 22, 2018
In the News: Article on ME/CFS for Family Doctors Published
The article provides a thorough overview of ME/CFS, including its history, the IOM effort to establish diagnostic criteria, demographics, diagnosis, and treatment. It is, of course, written specifically for practicing family doctors, so it provides facts to dispel the most common myths that doctors might have heard about ME/CFS in the past. The section on treatment is brief, but the article lays the groundwork for doctors who see patients to at least begin to recognize ME/CFS, understand how severe it can be, and begin to treat. As we all know, just getting doctors to recognize that ME/CFS is real, is debilitating, and that real medical treatments are available would be a huge step forward.
I was happy to see my home state (I grew up in Rochester) once again taking the lead in educating its doctors about ME/CFS. The NYS Department of Health also issued a letter to doctors last year about ME/CFS. Now, we need to get the other 49 states to follow its lead!
This is a great article to share with your doctor, as it provides a good overview and a long list of scientific studies to back it up. Just click the link to the article above and print pages 23 - 25.
As a reminder, an ME/CFS Pediatric Primer was also published last year, which is an excellent document to print and share with your pediatrician or family doctor, if your child has ME/CFS (or is suspected to).
Things are looking up! It's going to get harder and harder for ignorant doctors to remain in the dark, as great information like this continues to be published.
Wednesday, February 21, 2018
Great News! Glutathione Now Available as a Nasal Spray!
Copyright: sudok1 / 123RF Stock Photo |
I wrote a post here about a year ago about Increasing Glutatathione in ME/CFS and Related Illnesses and about the improvements my son and I have seen from adding glutathione injections to our treatment regimen. You can read that post for more details on exactly what glutathione does, why it's important, and what roles it plays in our illnesses.
The bottom line is this: glutathione is a naturally occurring compound that people with ME/CFS, fibro, Lyme, and similar illnesses don't make enough of. Glutathione is crucial for methylation, energy production, detox, improving exercise intolerance, and immune function, so increasing glutathione (helping to give our bodies more since they're not efficient at making enough) can have ample positive effects on almost all of our symptoms. Oral glutathione supplements are poorly absorbed and don't get into the cells well, where they need to be to help. Until now, the best approaches were IVs or intramuscular injections. That post also explains the improvements we've personally seen from glutathione.
So, fast-forward to today. I have kept up the twice-weekly glutathione injections and have seen great benefits from them. Among other things, I went from getting bacterial bronchitis 4-6 times a year to not getting it at all for over 18 months! The downside is that intramuscular injections use a large needle and are painful...though I've gotten better at it with practice. My son hasn't kept up with his glutathione injections regularly, in large part because of the difficult and painful injections.
So, I was thrilled to hear recently that glutathione is now available as a nasal spray! I checked with our ME/CFS specialist, Dr. Susan Levine, who confirmed that it was true and assured me that the nose spray is even more effective than IV's or injections - and no needles!
Glutathione nasal spray is available through any compounding pharmacy (Skip's Pharmacy in Florida, a well-respected compounding pharmacy that provides many ME/CFS patients with low-dose naltrexone, is one option). The price is similar to what we were paying for injectable glutathione. We immediately filled a prescription for the new nose spray for my son.
He has been using the glutathione nose spray for a few weeks now. He just uses one squirt in one nostril each day. Because it's daily, it's much easier for him to remember it consistently than the twice-weekly injections...and he's not avoiding it because of pain. He says he is already noticing improvements in energy and how he feels overall. I am hoping this will also help with his recurring bronchitis, as it did for me. I am finishing up the injectable solution we have, and then I will switch to the nasal spray, too.
Glutathione can help improve SO many different aspects of our illnesses. Now it will be more accessible to more people - that's reason to celebrate!
NOTE: That earlier post on glutathione also lists additional ways to boost glutathione.
UPDATE 4/12/18:
If you can not get a prescription for glutathione nasal spray, there appear to be two commercial
brands on the market called GlutaQuick and GlutaStat, which you can search for online,
but it is a bit more expensive (I've included links to two sources).
NOTE: Do NOT buy glutathione mouth sprays - the pH in our mouths
immediately render the glutathione unusable, and it never gets into the
bloodstream where it is needed - these are just a waste of money (and if
you search for glutathione nasal sprays on Amazon, a bunch of mouth
sprays will come up, so read carefully).
Our experience after 2 months? My son switched to the nose spray back in
February, as soon as we found out about it. He admitted to me that he
hadn't been doing the IM injections because they hurt too much (they
definitely take some practice to master), so we switched him immediately
(I am using up the last of the injectible solution we have and then I
will switch, too). So, it's been about two months for him. His energy is
improved, he remembers it most days, and he is still using that first
bottle we bought, so it lasted awhile. Best of all? He came home from
spring break two weeks ago with some chest congestion, which for him
always means bacterial bronchitis. This time, though, he felt fine after
a few days of coughing, and he did not need to go on antibiotics -
hurray! So, the glutathione seems to be having the same positive immune
system effects for him that is has for me...and the nasal spray is much
easier, more convenient, and far less painful for him to use. I'm
switching, too!
UPDATE AUGUST 2021:
We have both been using glutathione nasal spray daily for three years now, and it still works very well for us. My son also periodically gets glutathione IVs, which are very effective and give him a big boost, when he visits his Lyme specialist. More info on other ways to increase glutathione here. It's absolutely essential for healthy immune function, detox, energy production, and more!
Tuesday, February 20, 2018
TV Tuesday: The X-Files
In case you somehow missed The X-Files phenomenon the first time around, the shows (and spin-off movies) center on two FBI investigators, Fox Mulder, played by David Duchovny, and Dana Scully, played by Gillian Anderson. Waaaay back in the very beginning, Mulder was stuck in a basement office investigating so-called X-files, strange or unexplained cases that often veer into the supernatural. Scully is a medical doctor and was initially assigned to keep an eye on Mulder and bring her skeptical, hardcore scientific point of view to bear on his supposedly woo-woo cases. Long story short, 11 seasons and more than 20 years later, Mulder and Scully still work together in that basement office, and Scully's medical and scientific expertise still can't explain away the X-files. Along the way, they uncovered a massive conspiracy involving aliens and alien DNA.
So, when the show came back last year for season 10, more than a decade after it ended, it picked up where it left off: at the end of season 9, the X-files had been closed and the two partners had been living their own lives. At the start of season 10, we see that Mulder never stopped investigating the alien conspiracy, and now the X-files are being re-opened, with Mulder and Scully back together, along with their longtime boss, Walter Skinner, played by Mitch Pileggi. Like the first 9 seasons, the show still alternates between stand-alone episodes with investigations of weird X-files type stuff and episodes that move the bigger storyline about the alien conspiracy forward.
As ever, The X-Files is creepy, suspenseful, intriguing, and has a great sense of humor, especially in some of those strange stand-alone episodes. The chemistry between Duchovny and Anderson is still great, even more so after so many years together (both the actors and the characters). Many of the same elements are still here from the original nine seasons, sometimes with a modern twist. We are thoroughly enjoying this old favorite.
If you have never watched The X-Files before, then you might want to start back at the very beginning with season 1 (especially if you are looking for a binge-worthy show) because of that ongoing conspiracy storyline that was slowly built up over time. The beginning of season 10 does provide some information on what came before, but it is a lot to pack into a single episode recap/continuation. Season 10 is just 6 episodes (I guess they were testing the waters), but we are now 6 episodes into season 11, which looks like it will be 10 episodes long. If you were an old X-Files fan back in the 90's, then definitely dive into seasons 10 and 11 - it's like seeing old friends!
You can still find all of season 10 and what has aired so far of season 11 On Demand for free. It looks like ALL 11 seasons are available online for free at the Fox website. You can also stream The X-Files on Amazon for $1.99 an episode or $14.99 a season. Here are links to season 1, season 10, and the current season 11.
Monday, February 19, 2018
Movie Monday: The Greatest Showman
Hugh Jackman stars as P.T. Barnum, and the movie is based (quite loosely) on his life. It begins in his childhood, the poor son of a tailor. He is in love with Charity, the daughter of a wealthy neighbor. Though he is sent away to school, he and Charity write letters to each other, and when he returns, she agrees to marry him and move to New York City. There, they barely scrape by and have two adorable little daughters, but Barnum has big dreams. He buys an old museum and tries to make it a success with wax figures and faked strange creatures. He finally gets the attention and success he craves when he changes it to a live show, peopled by those with unique talents, like trapeze artists, animal acts, and what was then known as freaks. In short, he created the first circus. He hires Phillip Carlyle, played by Zac Efron, as a second ringmaster, and their fame grows. Of course, things don't go smoothly for them, and the pair encounter plenty of challenges, including scorn and prejudice from some people.
The Greatest Showman is a musical, and one that the three of us enjoyed very much. It is filled with songs, dancing, and showmanship. It's best to approach this movie just as that - a colorful spectacle of fun. It is not a biopic of Barnum's life. According to the Wikipedia entry on Barnum, he was a bit more focused on money than on saving the forgotten people he hires, and there is no mention of a wife or children (and he was not nearly as handsome as Hugh Jackman!). It's best to go into this kind of film ready to be entertained - and we found it very, very entertaining. The music and dancing are all very well-done (who knew Jackman had so many talents?), and the brilliant colors and scenes of the show are joyful and fun, and heartwarming as well. Need a pick-me-up? We all left this movie with big smiles on our faces!
The Greatest Showman is still playing in some theaters - I highly recommend seeing this one on the big screen (check for recliner theaters near you!). Use the Fandango below or in the sidebar to find out where and when it is playing locally. It will be available for streaming on Amazon on March 20, 2018, and on DVD (available for pre-order now) sometime this spring.
Thursday, February 15, 2018
Throwback Thursday: Correcting Sleep Dysfunction in ME/CFS
This blog post I wrote back in 2009, Treating ME/CFS Sleep Dysfunction, is still the best and most accurate information I have about sleep dysfunction. It explains WHY our sleep is messed up, exactly what is wrong with it (hint: sleep studies and sleep specialists rarely help), and how to correct it. These approaches have worked wonderfully for my son and I for about 12 years now - we both get normal, refreshing sleep (including deep sleep) every night for 9-11 hours and wake up feeling good and ready for a new day. Note that, like all treatments for ME/CFS, finding exactly the right treatment for sleep dysfunction for each person usually takes some trial and error because we are all different. The kind of meds (again, not sedatives) that work well for my son and I (low-dose TCAs) don't work for a small minority of people due to a genetic defect that prevents them from metabolizing TCAs - if you have your genetic data, you can check for that or you can try them and see. The best approach is to use the two articles I link to in that post (the chart is especially helpful) and to work with your doctor to try different things until you find what works best for you - always start with super-low doses.
That is the primary way to correct sleep dysfunction, but treating other aspects of ME/CFS will usually have a positive effect on improving sleep (though for us, we still need the meds to correct sleep dysfunction.
In particular, treating Orthostatic Intolerance can help prevent random bouts of tachycardia (racing heart beat) during the night that disrupt sleep, so that will help somewhat but won't completely correct your sleep dysfunction. Specifically, though all OI treatments have the potential to help sleep a bit, taking low-dose 24-hour (extended release) beta blockers at bedtime can reduce or eliminate those bouts of tachycardia during the night...and, bonus! you wake up in the morning feeling good and ready to be active.
Treating Immune System Dysfunction can also improve sleep somewhat, since immune dysfunction is at the heart of this disease and is behind the endocrine dysfunction that causes the sleep dysfunction (yeah, we have a LOT of dysfunctions). It's a vicious cycle, so improving one aspect of this illness almost always improves others.
Finally, when you have ME/CFS, you should ignore some of the classic sleep advice that you will get from doctors and even so-called sleep specialists - they usually don't understand our specific type of sleep dysfunction. In particular, I cringe when I hear that a doctor told an ME/CFS patient NOT to take daytime naps and to force him or herself to stay awake during the day. This is terrible advice for someone with ME/CFS because the more exhausted we get, the more dysfunctional our sleep will be. When we get over-tired like that, we end up "wired and tired" and even less able to get a good night's sleep. So, instead of listening to the so-called experts, you need to Listen to Your Body and focus on what helps you to feel best. As most of us have learned the hard way, pushing past our limits only makes us sicker. Also, proactive rest is usually very helpful - where you rest before you feel wiped out in order to to try prevent that complete crash. For me, this means a an afternoon nap every single day, as I explain in this post, How My Daily Nap Saves Me.
Hope all that helps you to improve your sleep and correct your sleep dysfunction - it makes every other aspect of the disease better!
Tuesday, February 13, 2018
TV Tuesday: The Alienist
If you cross the TV show Bones with an FBI psychological profiler and set it in the 1890's, you begin to get an idea of the feel of this dark thriller. In 1896 New York City, Dr. Laszlo Kreizler, played by Danial Bruhl, is an alienist. According to the show's intro:
Kreizler is something of a renegade in showing both interest and compassion toward the mentally ill since the standard practice of that time was to lock them up or try to "cure" them through all kinds of barbaric methods. When Kreizler hears that a young boy dressed as a girl has been found brutally murdered on top of the just-being-built Brooklyn bridge, he sends his friend, John Moore (played by Luke Evans), to the scene, since Moore sometimes works as a crime reporter, putting his drawing skills to work. Moore brings a drawing of the horrific scene back to Kreizler."In the 19th century the mentally ill were thought to be alienated from their own nature. Experts who studied them were known as Alienists."
The police - who are mostly corrupt and operate on a bribe system - show little interest in solving the case, even after Kreizler points out that other child prostitutes have been found in similar condition recently. This is a class of people the police would prefer to just brush under the rug. Sara Howard, played by Dakota Fanning, grew up with Moore and now works as an assistant to Police Commissioner Roosevelt, the only woman in the police department. She is also interested in the case, and the three begin to investigate it on their own, along with the help of two Jewish brothers who are budding forensic specialists. Despite the apathy of the rest of the police force, Roosevelt wants to do the right thing and so allows this undercover investigation.
As with the original novel the show is based on, my husband and I are both enjoying The Alienist. If you enjoy modern detective and forensic shows, then it is pretty fascinating to see this turn-of-the-century approach, where fingerprint analysis was a brand-new concept and crime scene investigation cursory at best. The three main characters - and the supporting actors as well - are excellent in their roles, and the growing mystery is captivating. As you might expect from a show of this nature, it is pretty gruesome at times and very, very dark, both in topic and tone. I prefer not to watch this one right before bed! It's engrossing though, and we can't wait to see what happens next - I only wish my dad were still here - he would love this show!
We are three episodes into the new show, and all three episodes are still available On Demand (where we watch it) or on the TNT website. You can also watch The Alienist on Amazon, where the first episode is free and additional episodes start at $1.99 (or $15.99 for the entire season).
Thursday, February 08, 2018
Throwback Thursday: Lyme Disease & Other Tick Infections
Dozens of times each week, I get asked about Lyme disease and whether people with ME/CFS should get tested for it, so it seemed like a good topic for Throwback Thursday.
Just the title of this post I wrote in 2014 answers that question:
Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections.
The reasons why everyone with our diseases should also be evaluated for tick infections (including Lyme disease) are explained in detail in that post, but the bottom line is that these infections are often behind the scenes in ME/CFS or fibromyalgia, and it can be almost impossible for a patient or an inexperienced doctor to tell them apart. What makes getting evaluated for tick infections urgent is that when they are left untreated, they can cause permanent neurological damage. This essay by best-selling author Amy Tan tells about her horrible experiences with Lyme disease that have left her with lingering epilepsy, even after years of treatments. If you have joint pain, headaches, light sensitivity, nausea, or any neurological symptoms at all, it is even more urgent that you get evaluated immediately.
Monday, February 05, 2018
Movie Monday: Hello, My Name is Doris
Sally Fields stars as the 60-something Doris and steals the show in this fun, quirky role. As the movie opens, Doris has just lost her mother, whom she lived with and cared for her whole life. She is on her own for the first time and has lots of neuroses, including never throwing anything away and living in the midst of clutter. She works in an office, and someone new comes into her reclusive, habit-driven life when a new art director is hired. John, played by Max Greenfield (Schmidt on The New Girl), is hunky and kind to Doris. After a lifetime of reading romance novels, Doris is primed for true love (or lust) and falls for John, despite his being decades younger than her. Her best friend Roz, played by Tyne Daly, thinks she has lost her mind, but Doris' world is opening up for the first time. She is scared but also excited and enlists Roz's granddaughter's help in stalking John online. They discover that John loves a certain band that is playing locally the following week, so Doris goes to the bar where they are playing, sees John there, which leads to even more new experiences.
My friends and I just loved this warm, hilarious movie. Sally Field is perfect as Doris, with her wigs, brightly-colored clothes, and her infectious and growing enthusiasm for life. It's so much fun to see Doris' world opening up, as she explores her freedom for the first time in her 60+ years. It's an earnest, heart-warming, and very funny movie that is filled with joy. This is a great movie to watch when you need a lift!
Hello, My Name is Doris is available for free on Amazon Prime streaming or on DVD. It is available through Netflix only on DVD, not streaming.
You MUST watch this trailer, which highlights some of the warmth and humor of the movie:
Sunday, February 04, 2018
Weekly Inspiration: Celebrate the Small Stuff to Banish the Winter Blues
For my family, though, this is a time of year filled with joy and fun because we celebrate all the little (sometimes tiny!) holidays in small ways that brighten up the gloomy winter days. Don't worry - you just made it through the major holiday season, and I'm not suggesting another push beyond your limits for even more holidays. Rather, we celebrate in small ways suited to our limits, and you can, too. If you have kids at home, even better - they can pitch in to help decorate (maybe even cook if they are older), and all kids love to celebrate! Even if you are bed-ridden, you can still brighten up these gloomy winter days with small sparks of joy, celebrating days like Mardi Gras, Valentine's Day, St. Patrick's Day...even Groundhog's Day! If you're in a part of the world that doesn't celebrate this stuff, even better! Add some new simple and joyful traditions to your life.
This article I wrote for ProHealth, The Joy of Celebrations, explains how to add small celebrations into your life, with tips that will work even from your bed - wear festive pajamas, ask your partner to bring home holiday-themed foods, have your kids create some decorations to hang in your bedroom, watch something appropriate for the holiday on TV or your laptop, and more. The article includes lots of practical tips and ideas for bringing some joy into your winter days that will boost you up, not wear you out.
This blog post, The Joy of Celebrations, is one I wrote here on the blog about 7 years ago. You'll see that I used some of the same information and ideas for my ProHealth article, but the blog post includes some of our own family photos of our own small celebrations - even one for Groundhog's Day!
One of our biggest celebrations all year at our house is for Mardi Gras, because my husband and I used to live in New Orleans! My sons and I have now improved enough that we were able to resume our old tradition of hosting a party (though it's a small, quiet one now), but even in our sickest years, we still celebrated in our own small ways alone at home. Here are some ideas and links for celebrating Mardi Gras from your bed, no matter where you live! There's even a link there to live webcams of the parades in New Orleans. Unfortunately, the links to my recipes on that post are no longer working (the magazine I published them in was sold, so they are no longer on the site), but you can see those recipes here, in a copy of the article. Mardi Gras Day this year falls on Tuesday, February 13, so next weekend is a great time to celebrate.
Here at our house, we will be celebrating Superbowl tonight (no, I don't care about football, but I enjoy the foods and the ads!), and next week is Mardi Gras! We don't do as much for Valentine's Day, with our sons out of the house now (and this year, it is the day after Mardi Gras Day), but my husband and I will get some yummy take-out and share some chocolate.
My psychologist who specialized in chronic illness used to always ask me, "What are you looking forward to?" We have lots of spots of joy coming up in the next two months to look forward to! Add these no-fuss, no-work mini-celebrations into your life, and you'll be past those winter doldrums before you know it...maybe you'll even look forward to this time of year! (though you can keep celebrating small holidays any time of year)
How do you celebrate the small stuff?
Happy Mardi Gras! |