On the Road Again?

Well, we're frantically trying to get ready for our spring break trip, but we're not sure we'll be able to leave on time.  What a week!

We got Jamie back to school this week (he's been working non-stop to get caught up after missing all of last week), but Craig's been out sick all this week.  Turns out he wasn't just crashed on Monday...he got strep throat AGAIN!  For those of you keeping score, that's twice in two weeks!!  He just finished his antibiotics Sunday.  The doctor said the test came back positive immediately, even before the timer went off.  The poor kid is absolutely miserable.  His throat hurts so much he can barely eat or drink - when Craig loses his appetite, things are really bad!  Unfortunately, after going to a sleep-over party Saturday night, we assumed his symptoms Sunday and Monday were "just" CFIDS.  It's so hard to tell sometimes.

We are all really excited about the trip (well, Craig will be when he perks up).  I have an awesome stack of audio books for the ride, Ken will get groceries tomorrow (he got mad at me for going to Trader Joe's Tuesday!), we'll load up the camper, and hopefully hit the road.  I can't wait to be camping again!
 
So, we're hoping Craig feels well enough so we can leave as planned...wish us luck! 

Movie Monday 3/29

Wow, what a movie week!  Poor Jamie was severely crashed for 5 straight days - left the couch only to go to the bathroom and go to bed.  He watched a LOT of movies!!  Plus, we watched some together.

• With the kids, we watched Planet 51, a very clever animated movie about what happens when a US astronaut lands on an alien planet that looks curiously similar to Earth in the 1950's, only with green-skinned, antennaed citizens.  We all enjoyed it.
• With Craig at a sleep-over party Saturday night, we watched The Sum of All Fears, starring Ben Affleck and Morgan Freeman, with Jamie.  He'd never seen a movie based on a Tom Clancy book before (this was one of his Jack Ryan stories), and he loved it!  I don't know if I should recommend this one to people with CFS, though - it was so tense and suspenseful, my heart was racing!
• Ken and I watched Northfork Friday night.  How to describe this movie?  The word that kept coming to Ken and I was...weird!  It's about a town in the early 1950's that is going to be flooded when a new dam is put into use.  It sounds like an interesting concept, right?  The movie centers on 6 men, all dressed identically in black, who are responsible for getting the last stragglers to leave town - a guy and his two wives who've built an ark, a guy who's nailed his shoes (with feet in them) to his porch, a devoted priest with a sick orphan in his care.  The whole movie is filmed in this dark, creepy style where everything looks like it's black and gray, and, most perplexing, there is a sub-plot involving angels.  Way beyond quirky.
• Saturday night, we watched Lean on Me, another movie starring Morgan Freeman, this time as the principal of a failing high school in New Jersey.  It was based on a true story of how the principal took over this school that was like a war zone and transformed it.  This is the kind of movie that leaves you with a lump in your throat and a chill down your spine.  It's a real uplifting story.  In fact, I think the kids would have liked it, too.

Besides those, Jamie watched Ghostbusters, The Bourne Identity (Jamie's first Robert Ludlum movie), Snow Day, Pleasantville (one of our favorites), Welcome to Mooseport, Man of the House, Big Daddy, and Shallow Hal - basically every movie shown on FX last week, plus a few DVDs.  Thankfully, he is back at school today, though now he has a full week's worth of work to make-up (again).  And now Craig is home, crashed, today.  We had to install digital converters on all our TVs yesterday because our cable company is requiring it, so Craig is playing around with all the new channels today.  I hope he bounces back soon.

Have you seen any good movies lately?

Quote It Saturday 3/27

More busy, busy!!  We're frantically trying to finish planning our spring break trip, so after all that computer time this week, I'm now spending the weekend on the computer, too, looking for campgrounds and hotels and making reservations.  We're taking our pop-up camper and driving to southern Louisiana to visit Cajun country, then spending a couple of days in New Orleans.  It's a lot of driving, but we'll be camping along the way - we can't wait!!

So, just a quick quote today.  It's amazing how often I read something that resonates with me with respect to living with chronic illness in an unexpected place.  This was a middle-grade book, Murder at Midnight by Avi, that I recently reviewed at Great Books for Kids and Teens, my kids' book review blog:

It was the Greek philosopher Heraclitus who said,"If we do not expect the unexpected, we will never find it."
    - Murder at Midnight by Avi

This pretty much sums up my feelings about hope.  Despite all the data that few people fully recover from CFS, I still expect to improve over time and perhaps even recover.  I expect that medical research will continue to progress in time to help both me and my sons.

For more on hope, check out these blog posts I wrote a few years ago on Chronic Illness & Hope and Hope, Part 2.

Hope you're having a good weekend!

I'm Still Standing!

Coincidentally, since Chris at Sick and Tired was just talking about song lyrics taking on new meanings, I've had "I'm Still Standing" by Elton John stuck in my head all week:

"Don't you know, I'm still standing, better than I ever did,
Looking like a true survivor, feeling like a little kid.
I'm still standing after all this time..."

It's been a very busy week, and I've passed several physical milestones this week...and I'm still standing (literally)!  Jamie's been badly crashed all week, so he's had the couch, where I usually spend a fair amount of time, but I haven't really needed it much.

I've been working hard at a deadline for work.  It was easy work - almost embarrassing, really - my job was to play a bunch of online games to test out various websites for kids.  But, it meant a lot of computer time, sitting up, plus the stress of working against a deadline.

On Tuesday, I went to the grocery store - all by myself! - for the first time in many months and did a full week's worth of grocery shopping, then ran home, took Jamie to the doctor's office and the drugstore, and stopped at the library for DVDs.  I also made it out to dinner and to my book group with friends that evening.  And (drumroll please)....I didn't crash the next day!  In fact, I even took a walk the next day - that's when "I'm Still Standing" started going through my head.

Another milestone: yesterday: I made it all the way around my neighborhood, about a 20-minute walk (slowly, but I made it) - that's again the first time in months I've been able to do that.

So, it seems that I'm finally coming out of my long winter relapse and hopefully making my way back to where I was last summer.  I don't know whether this is due to the d-ribose I started 2 weeks ago or simply the end of virus season or some combination of the two.  Jamie also started on d-ribose last week, though a cold caused a bad crash all this week.  I'll let you know how it goes for both of us.  One thing is for sure - it's very expensive!

I'm a little worn out this evening, but still standing (or I will be in a moment to make dinner)!  Busy weekend coming up, too - I need to finish planning our spring break trip.  So, lots of reasons to feel optimistic!

Have a great weekend!

CFS Webinar on Orthostatic Intolerance

Busy, busy week - sorry I haven't had much time for blogging!  The good news is that I'm busy because I've been feeling pretty good AND I have a new writing assignment.  The research phase is due tomorrow and is very time-consuming.  The bad news is that Jamie has been home sick since Tuesday with a sinus infection and strep throat.  He's been on antibiotics for 2 days now but is still crashed.

Anyway, I just wanted to tell you about this great Webinar that is going on TODAY at noon, Eastern time, sponsored by the CFIDS Association:  Going With the Flow - Blood Flow, That Is.  It's going to cover Orthostatic Intolerance and the latest research on how reduced blood flow affects people with CFS.  I had planned to participate, but I know I won't have time today.  It should be good.

You have to sign up in advance, so if you're interested, register for the webinar here.  Sorry for the late notice.  If anyone attends, let me know how it was!

Also, iGive is running a great promotion...register for iGive and visit 1store through iGive before noon today (Central time), and they'll donate $1 to the CFIDS Association (or whatever charity you choose when you sign up).  You don't even have to purchase anything - just visit a store (all the major online stores are available through iGive).  iGive is a great organization, and this is a really good deal, so if you're not registered yet, use this link to sign up before noon today!

Movie Monday 3/22

Very hectic Monday here...and tomorrow's not looking much better. All three of us were worn out after our active weekend, though I'm feeling better this evening after a good nap. Craig was in the worst shape (it always surprises him when he feels wiped out on Monday mornings), but he did manage school. It was worth it - we enjoyed our visit up to my cousin's house. The kids all had a blast together.

Ken was away this weekend on a rare getaway with friends, golfing in Myrtle Beach. The poor guy got a stomach virus the first day and spent 24 hours with fever and chills in bed, but he perked up enough to enjoy the last 2 days of golf and is on his way home now. So, I watched a couple of girl movies, plus one with the kids:

• The boys and I watched Casino Royale, a recent movie about the young James Bond, played by Daniel Craig, who has just achieved 00 status and is still a bit of a loose cannon. It was excellent and very action-packed. Jamie had a school assignment to write an essay about a movie, citing five science-related scenes and whether or not they could really happen. It was a cool assignment, and a James Bond movie was the perfect choice for it!
• Friday night, I watched The Tenth Circle, a TV movie based on a Jodi Picoult book that a friend had told me about (she and I both read the book). It's a pretty dark story, about a teen girl in Maine who's the victim of date rape. She doesn't remember a lot from the night, and things get more and more complicated as the police investigate her ex-boyfriend. The girl's mother teaches Dante's The Inferno at the local college (hence the title). It was an excellent book, and the movie was very well-done, though it's somewhat disturbing (and made my friend and I glad we each have two boys!). In fact, I quoted from this book in a previous Quote It Saturday - quotes that are amazingly relevant to living with chronic illness.
• Saturday and Sunday I watched 27 Dresses, a romantic comedy starring Katherine Heigl (from Grey's Anatomy). It was a light and sweet movie, the complete opposite of The Tenth Circle, but that's just what I needed after a very long day. By the time we got back from visiting my cousins and I got the boys to bed, I was totally wiped out! I lasted about an hour, then finished the movie Sunday evening. It's about a woman in NYC who has been a bridesmaid in 27 weddings and is always focused of other people's needs. It was a bit predictable but fun and entertaining.
  

Have you seen any good movies lately?

Quote It Sunday 3/21

Happy First Day of Spring! It's finally here - we survived the long, hard winter!

I'm pretty beat today, but it was expected and worth it. I drove the boys and I yesterday to my cousin's house (90 minutes away) to visit his family and his sister (my other cousin) and her family who were visiting from North Carolina. We hadn't seen the NC group in four years, so it was great to see everyone, and the boys had a blast playing with all their cousins and getting reacquainted.

So, I'm a day late on the weekly quote, and I actually planned one that was a bit more positive, but this is how I felt this morning:

I used to look forward to every day. Now I wake up totally exhausted and think, "Oh, shit, I'm awake."

- CFS patient quote from the book Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses: The Comprehensive Guide by Katrina Berne, PhD

That is one of many patient quotes Katrina included in her chapter, Overwhelmed and Uncertain: The Effects of CFS and FM. I highly recommend this book. I bought it shortly after being diagnosed with CFS and have read it cover-to-cover several times and still refer to it often. It's a very thorough explanation of the physiology behind CFS, how it's diagnosed, what treatments are available for various symptoms, plus very in-depth coverage of the emotional aspects of living with CFS. When my mother was struggling to understand how CFS affected me, I copied that entire Overwhelmed and Uncertain chapter and sent it to her to read. This book was a real lifesaver for me at a time when I was desperate for information. It was published in 2001, so it's not completely up-to-date in terms of the latest research, but it was very thorough at the time and still provides an excellent overview for understanding CFS, especially for those who are newly diagnosed.

Naptime...

Christian Weight Loss Book

I had all kinds of plans to write a thoughtful, in-depth post on a serious topic today (based on middle-of-the-night musings)....but I'm out of time and energy, and it's Friday evening!

So, instead, I will just tell you about a book review I wrote today of a Christian weight loss program called The Eden Diet. I'm neither a practicing Christian nor much overweight (except for the extra 5 pounds I'm carrying thanks to CFS), but the author is one of my oldest and closest friends. Even recognizing that I'm not really her target audience, I read The Eden Diet and found it very informative. My friend's best qualities - intelligence, compassion, and a great sense of humor - all come through clearly in her book, and she outlines a very common sense approach to changing the way you eat so that you can lose weight. She's also highly qualified, as both a medical doctor who has studied nutrition and obesity and a formerly overweight person herself who lost 75 pounds and has kept it off for over 25 years. Also, she's one of my best friends! her approach could definitely work for someone with CFS (other than the exercise part, of course), and I plan to implement some of her suggestions myself. So, if you do happen to fit into her target audience, you might want to check out my review or The Eden Diet website.

As for me, my week turned out quite differently than I planned (don't they always??). Craig got strep throat this week and was horribly sick for a couple of days; the antibiotics have kicked in now, and he's feeling much better. I'm crossing my fingers that Jamie and I don't catch it. Ken left at 3 am this morning for a 4-day golf trip - he was as excited as a little kid on Christmas Eve! I guess I did OK this week myself - no bad crash days (a few so-so days and one really good day). I'm hoping to be able to drive the kids and I to my cousin's house (90 minutes away) tomorrow to visit with his family and with his sister's family who are visiting. We'll see how we all feel tomorrow. I always feel so bad not being able to nail down my plans for other people, but it is what it is, right?

Have a great weekend and enjoy this beautiful spring weather!

The Happiness Award

I was very pleased this weekend when Forgetful Girl gave me The Happiness Award (check out her excellent blog and its list of other Happiness Award winners)! This award is right up my alley because I'm usually a pretty happy person, and I've made a special effort, since my CFS diagnosis, to recognize and appreciate the joys in my life - the things that make me happy.

So, thank you, Forgetful Girl! Now, I'm supposed to list 10 things that make me happy and pass the award on.

Ten Things That Make Me Happy

• Sunshine! It was shining brightly today and making everything seem better.
• Music - listening to lively, feel-good music and, of course, singing along!
• My husband and kids. I love our little family of four.
• Being outdoors. I wrote a blog post about The Joy of the Outdoors.
• Good food. Especially with so many of life's little's splurges now unavailable, I love to enjoy really good food (and prepare it for my loved ones when I'm able).
• Springtime! The sight of the first snowdrops blooming today made me smile.
• Good friends - both in-person and virtual! I wrote previously about The Joy of Friendship.
• Losing myself in a really great book.
• Watching a wonderful, uplifting movie that makes me laugh and cry.
• Travel. Oh, I love to travel!! I'm currently planning our spring break road trip to Louisiana and am so excited I can hardly wait.

Just making this list made me happy!

So, it's time to pass on The Happiness Award to a few others. As with the last award, this one comes from me with no strings attached. If you feel up to passing the award along, great! If not, no problem. You might want to try listing 10 Things That Make You Happy, though - just making the list will cheer you up!

I'd like to recognize the following bloggers who have shared their happiness with me and inspired me with their upbeat spirits and focus on joy:

• PJ at Lyme Is Crazy
• Renee's Reflections
• Laura at A Time To Heal
  
• Never That Easy
• Kerry at Lemon-aide
• Dominique at 4Walls and a View

Please stop by their wonderful blogs to share in their happiness!

Movie Monday 3/15

Ugh...I hate springing forward. Even worse, I went to bed at 9:30 last night and couldn't get to sleep until past midnight! I had the Sunday Night Spins - that's what Ken and I call those Sunday nights when your brain is spinning with all the stuff you have to do in the coming week and you can't get to sleep. Maybe the d-ribose is still disrupting my sleep, too. I cut back to two doses a day, with the last one at 3 pm, after my nap, and that seemed to work well for a few days. Anyway, bottom line is that I'm short a couple hours of sleep and am wiped out and achy today - definitely a couch day.

We had a busy weekend - I went out two nights in a row and made it to our friends' St. Patty's Day party Saturday evening!! - so we didn't have a lot of movie time but fit in two DVDs:

• Friday night, after our lovely dinner out, Ken and I watched Amelie, a French movie (with subtitles) I've wanted to see for years. It was nominated for 5 Academy Awards and lauded as The Feel Good Movie of the Year (2001). It's the sweet and funny story of a young woman, Amelie, who is the product of two very strange parents and an isolated childhood. She's living on her own in the Montmartre neighborhood of Paris (I got out my photo album of my high school trip to France after the movie!) and is searching to find both herself and love. Partway through the movie, Ken said, "Did the box say this movie was "quirky"?" Yes, both Amelie and the movie are quirky, but they're also full of humor and fun. It was a nice light-hearted change from some of the more serious movies we've seen lately.
• With the kids this weekend, we watched Get Smart, the recent big screen adaptation of the classic TV show. We all enjoyed this funny, action-filled movie starring Steve Carell, Anne Hathaway, and Dwayne Johnson. The kids have never seen the original Get Smart, but Ken and I enjoyed this remake which stuck closely to the spirit of the original. In fact, Anne Hathaway played a perfect Agent 99, very reminiscent of her predecessor. Jamie said he wants a copy of Get Smart for our own DVD collection - he says it will be perfect for cheering him up on sick days!

Have you seen any good movies lately?

Quote It Saturday 3/13

Well, I did crash after my two big days...but only briefly! I had all the classic CFS symptoms Friday morning - sore throat, aches, exhaustion - so I rested, totally gave up on my to-d0 list, and took an early nap. And...surprise! I felt a lot better by afternoon. Ken came home early, we took each of the boys to a friend's house for a sleep-over, and went to the closing meeting for our mortgage refinancing. Then, Ken and I enjoyed a wonderful dinner out (it's been ages since we've had any time alone together) and a good movie at home in the evening. I'm still feeling pretty good today and am even hoping we may be able to stop by our friends' St.Patrick's Day party tonight (we've missed it for many years). Too early to draw conclusions yet, but I'm thinking the d-ribose might actually be helping!

I thought I'd try to resurrect my Saturday routine of posting a book quote. Since I'm in such a good mood, I was looking for something happy and uplifting today. Today's quote is a partial excerpt from one of my favorite books of 2009, The Crowning Glory of Calla Lily Ponder by Rebecca Wells (my review of the audio book). If you're looking for a book to lose yourself in, that will make you laugh out loud and cry your eyes out, this is a great one!

Here's one of my favorite quotes from the book, a list that Calla Lily's mother, M'Dear, wrote that hung on the refrigerator of their home in the little town of La Luna, Louisiana. In the book, La Luna is both the name of the town and the name of the river, and Calla's mother also refers to La Luna, the Moon Lady, who watches over her. I've abridged this list a bit so as to not give away any spoilers:

The Rules of Life According to M'Dear:

• Sleep with the windows open (window screens are fine, when necessary).
• Whistle in the dark. Calla Lily, your attempt at whistling is good enough.
  
• Good enough is good enough. Perfect will make you a big fat mess every time.
• Sing anytime you feel like it, and even more when you don't feel like it. Sonny Boy, this does not mean in math class, although you have my permission to sing in all other classes. Will, all your silent singing is good, and also try to sing out loud at least once a day.
• Let love slip underneath closed doors, through tiny cracks in the walls, through your pores.
• MOST IMPORTANT: KEEP ON DANCING. Dance while you're brushing your teeth, dance while the sun shines, dance under the moon...Remember, La Luna waits for us to dance in her light, so dance in the streets. When life is happy, dance in the kitchen, and when life is roughest, dance in the kitchen...

- The Crowning Glory of Calla Lily Ponder by Rebecca Wells

Lots of good advice, don't you think? I especially like "Perfect will make you a big, fat mess every time." I love the Live Your Life To the Fullest attitude embodied in this novel.

Hope you're enjoying a nice weekend!

Sue's Two Big Days

After spending much of the last 6 months homebound, I had a couple of big days of outings this week!

Yesterday, to kick off the day, a wonderful friend drove over here, just to join me in my meager 10-minute slow walk! It was great to see her and have time to catch up. Then I showered (oh, joy!), rested a bit, and went to the library for a book discussion. This was my library's first noon-time book group (they have another that meets in the evening that I've never managed to get to), and I really enjoyed it! The book we discussed was Bel Canto by Ann Pratchett. You can read my brief review at Goodreads, if you're interested.

At the discussion, I ran into an old work colleague from DuPont that I hadn't seen in 15 years, so I enjoyed catching up with her. All this social interaction in one day after so much isolation was thrilling!

Amazingly, I still felt OK today and drove to New Jersey for a check-up with my Lyme doctor. This is always a big day as well, with a 90-minute drive each way. I just got Lyme about 18 months ago. If you missed all that drama (!) and explanation, here is a 2008 blog post about my initial Lyme diagnosis and how to tell CFS from Lyme and here is another blog post from about a year ago with more information about my Lyme treatment, plus information on being tested for Lyme.

As for today, the doctor is still optimistic that I will get rid of Lyme completely. He raised my dose of Plaquonil, an anti-inflammatory that also helps the antibiotics (doxycyline) better penetrate my tissues, so I may experience another herx reaction - hopefully not too bad this time. He agrees that my current relapse is almost certainly a CFS reaction due to exposure to all the viruses this winter; he said it was a terrible season for viruses. So, he and I are both hopeful that I will improve with spring coming. He took blood for standard monitoring, and that's about it.

After my appointment, as is my routine, I stopped at the huge Target store across the street from his office (ours in Delaware is 25 minutes from my house) and stocked up on necessities. The cashier finished ringing up my huge order, I packed all the bags in my cart...and the power cut out for a second before I could pay! We had to unload everything so she could re-scan every item! Fortunately, I was still doing OK. Then, I drove home, with my customary Burger King burger and fries and an audio book in the CD player.

And....(drum roll, please)...I still feel OK! But ask me again tomorrow...

Trial of D-Ribose

Feeling a little better today but still had bad OI and very limited stamina. The boys are both doing well, though, and the sun is still shining (the rains come tomorrow), so I'm not complaining. I love the sunshine!!!

I'm trying something new, for the first time in a while. I've been in such bad shape this winter that I held off on trying anything new, waiting (in vain) for some kind of steady state. At my last visit, my Lyme doctor (I got Lyme last year, on top of CFS) suggested I try D-ribose. I already had a bottle at home, so I decided to give it a try. It's a sugar that our cells need in order to produce energy, one of many energy pre-cursers in short supply in those of us with CFS. It's also supposed to help with exercise intolerance, which would be the ultimate ecstasy for me right now, as my stamina is terrible.

Here's a recent study of using D-ribose for CFS that had excellent results. The most comprehensive information I found on treating CFS with D-ribose was in this article on Dr. Teitelbaum's website. Many of you remember that I had some major problems with Dr. Teitelbaum's appearance on the Dr. Oz show where he talked about CFS. I do strongly object to the way he portrays CFS in his writings and public appearances - his burring of the line between chronic fatigue and CFS, his overzealous promises of recovery (which we all know is not that simple), and his promotion of his own line of supplements. HOWEVER, all that said, he is knowledgeable about certain aspects of CFS, and his website does contain some good information (if you can get past the sales pitches).

In my own limited experience, I haven't had much luck with other energy supplements I've tried. I think it's because the problems with our cells not producing energy efficiently are effects of CFS, not causes. The root causes lie in our dysfunctional immune systems, our messed up autonomic nervous systems, and our poorly functioning endocrine systems, and I believe that energy supplements won't have much effect until those underlying problems are dealt with. Unfortunately, no one yet knows how to fix our dysfunctional immune systems, though treating underlying infections seems to help.

So, I'm interested to see if the D-ribose helps at all, but I'm not too optimistic. I hope I'm pleasantly surprised. Most studies show it takes about 10 days to see results; I just started on Friday. I do suspect that it's already interferring with my sleep - I've had trouble sleeping at night the last couple of nights and falling asleep for my nap today. I'm going to try changing my dosing schedule to see if that helps.

I'm very interested to hear whether anyone else has tried D-ribose and what your experiences have been.

P.S. Did anyone catch House last night on TV? The featured patient was an obsessed blogger!

Movie Monday 3/8

One of those Mondays. I made a list last night of all the things I wanted to do this week (will I never learn??), then woke this morning feeling awful. I slept poorly, which is unusual for me - the medications I take for my sleep dysfunction normally work well. I got Craig off to school this morning and just collapsed on the couch - sore throat, terrible aches, the works. I tried to get a little work done on the laptop at first, then gave up completely (which was a huge relief). I moved my pillows and blankets to the living room where the sun was shining in and just read my book the rest of the morning, waiting until it was time for my nap. I took an extra-long nap, and I think I'm doing a little better now - we'll see.

Anyway, time for the movies!

• Ken didn't get back from his trip until late on Friday, so I watched a movie he would have hated, The Sweet Hereafter. I had just read the book last week for my book group and wanted to see how the movie compared. The book was well-written but very depressing - the story opens with a school bus accident in a small town in the Adirondacks that kills many of the town's children...and it never really becomes uplifting or any happier than that! It's told from several perspectives: the bus driver, one of the fathers who lost his twins in the accident, a big-city lawyer who comes to town to stir up interest in a lawsuit, and a teen girl who's left in a wheelchair from the accident and , against her will, becomes the lawsuit's primary witness. I actually liked the movie a little better than the book, though it was still pretty depressing. It was very well-made, though, and captured the best points of the book quite well. In fact, it won an award in the 1997 Cannes Film Festival and was nominated for two Academy Awards. Still, Ken would have hated how depressing it was.
• Saturday night, we watched Elegy together, which was also rather melancholy, though not without its high points. It's about a love affair between a cultured, older professor known for his many romantic conquests, played by Ben Kingsley, and his young, beautiful student, played by Penelope Cruz. It's a very sexy movie, but also very sad. Kingsley's character seems incapable of long-term commitment, even when he realizes he truly loves her. I enjoyed it very much.

Have you seen any good movies lately?

Weekends, Before and After

It's been a pretty nice weekend so far, but the weekend seems to go by so quickly lately! I usually sleep in a bit (I'm not able to sleep much in the morning - I'm awake at first light - but I manage an extra hour or so on weekends with the help of a sleep mask), then we have a big breakfast - pancakes every Sunday, then Ken and I read the paper, something we don't have time for during the week. By then, it's usually 10 or 11 and only a couple of hours until I have to take my afternoon nap!

So, I try to do a few things around the house, then lunch and nap, then it's time to make dinner, then it's evening already! I really hate not being able to help Ken with yard work and stuff like that.

We've had gorgeous weather this weekend, compared to our past month. Temperatures hit 50 F today, and the sun has been shining brightly. I've gone out each day on two very short walks. My stamina is so horrible right now from this nasty virus-filled winter that I can't manage all the way around the block anymore, so I'm trying very short walks so I can (hopefully) build my stamina back up.

But I'm missing the old days today - you know, pre-CFS days. Back then, I was full of energy. I usually spent one day of the weekend getting things done - yard work if it was nice out or clearing out clutter in the house if it wasn't. The four of us might run errands, going from store to store or run to the home improvement store, then back home for some kind of project.

One day of the weekend, I'd plan something fun for all of us - almost always a hike. We all love the outdoors so much that I made sure to make time once or twice a week to get out hiking. Sometimes we'd explore someplace new or go back to an old favorite spot, hike for a couple of hours, and come back feeling refreshed and full of energy!

Finally, there was usually some sort of social aspect to our weekends. Sometimes Ken and I would go out to dinner together. Often, we'd have friends over for dinner - the kids would run around together, I'd make a big meal, enjoy a couple of beers or a glass of wine, and we'd enjoy our friends' company. I really miss those days.

On the positive side, both boys are having a great weekend! Jamie not only made it to his dance on Friday night (and stayed up past 11!) but managed to play outside all day long on Saturday with Craig and a few of their friends. They were so full of joy with the changed weather! It was only about 45 degrees on Saturday, but they were out running around in shorts and t-shirts, as if it were summer. By some miracle, they both feel good again today! Jamie worked on his homework this morning (he's still trying to catch up from those 6 days he missed last month), and now they're outside again. Craig just ran in to grab more Gatorade, and said to me (out of breath), "I'm having a great time, but it's almost Monday!" I love when they can act like normal kids.

So, I guess, it's actually been a very nice weekend, but I do still yearn for the good old days...

Happy Friday!

Ah, it's the weekend! Although that may not mean much to someone who spends most of her time in her home anyway, I still look forward to it. The weekend means that I don't have to get up early (6 am today!!), I don't have to worry about trying to work when I don't feel up to it, and I get to see more of Ken and the kids. Ken returns from his trip tonight. Thank goodness I only had to handle the early morning routine once this time!

I'm still not feeling great but not horrible either - back to that in-between place that I've spent so much time in these past six months.

I experienced a happy coincidence this afternoon! I haven't been able to go shopping (other than necessities like groceries...and you know where that led me) in a long time, but Jamie desperately needed jeans today. Poor kid has been running around in too-small jeans with rips in them for months (just so you don't think I'm a horrible mother, he has to wear dress pants to school). Anyway, there's a Blackout Dance at school tonight, with black lights, to raise money for Haiti, so I promised to take him to Kohl's after school to buy new jeans.

While I was sitting in the chair outside the men's dressing room, waiting for him to try on ten pairs of jeans, I glimpsed an adorable little half-sleeve cardigan - black with cheery white polka dots - hanging on a nearby rack amidst all the men's clothes. I took off my tired old fleece pull-over, slipped it on, checked it in the mirror, and I loved it! It was just my size and on clearance, reduced to only $10! As you can tell, this just made my day. I don't have a lot of money for shopping anyway, but I do really miss browsing the sales racks and looking for something new.

So, now I'm ready for the weekend! We have no plans, nothing to do, no where to go, and the weather is supposed to finally turn nice here with temperatures in the 50's. Enjoy the weekend!

Missing Out and Resting Up

I wasn't planning to write a blog post today but just felt like talking to someone who gets it...

sigh...it turns out I did have to pay for my victorious return to the grocery store yesterday. I felt fine all day yesterday and OK when I woke up this morning, but then got steadily worse as the day went on. After I got Craig off to school, I made a list of things I wanted to do today...then an hour later crawled into bed, aching all over, and just gave up. I hate days like this.

I've been looking forward to my book group tonight (it's a major part of my meager social life!), but I just decided to stay home. I know it was the right decision because I don't feel disappointed, just relieved. The idea of getting dressed and going out was exhausting, even if it's just to my neighbor's house down the street. I might be able to do it, but I don't want to endure yet another payback day tomorrow. Ken leaves tomorrow for a short business trip, and I'll need my energy to handle things on my own, plus our cleaning service comes tomorrow morning, so I know I won't be able to rest completely.

Just lying here on the couch with my laptop, I know I made the right decision. I feel very achy and mentally wiped out. Hopefully, missing out on my book group tonight will help me to bounce back tomorrow. At least, I can socialize online...

My Ill-iversary

Eight years ago today, on March 2, 2002, my life changed dramatically. That was the day that divided my life into before and after.

I was going to include a quote from my journal from that date, but the only remarkable thing about what I wrote is how unremarkable it was. I felt awful that day, but I had no idea that my life had just forever changed; I just thought I'd caught a virus (and maybe I had?). I never dreamed that eight years later, I'd still be sick and certainly never could have guessed that both of my sons would also be chronically ill. How could such a significant day in my life seem so ordinary at the time?

For many years, March 2 marked not only my CFS anniversary but also a low point in my condition (check out my 5-year anniversary post). Fortunately, today I felt much better than I have recently.

I was in really bad shape yesterday. I was not only recovering form a hectic weekend, but I also had a bit a stomach virus. As usual, I didn't really get it full-blown, but I had severe stomach cramps for about 24 hours, plus felt badly crashed. I was much better today and even - ready for this? - went grocery shopping! Woohoo - first time in weeks I made it to the grocery store. No payback yet - I'll let you know tomorrow!

So, another year has gone by, and the boys and I still have CFS. I hope that some day, some year, March 2 will lose its meaning for me.

Movie Monday 3/1

No time for movies this weekend because we made a whirlwind trip to Connecticut for my niece and nephew's birthdays, after yet another snowstorm came through our area. We were planning to leave on Friday afternoon, but with the entire New Jersey Turnpike reduced to 35 mph, we had to wait until Saturday. We left at 8 am Saturday morning and arrived just in time for the birthday party at 1 pm, helped my sister and brother-in-law wrangle 30 noisy kids between ages 4 and 8, and drove back home after breakfast on Sunday. Whew. Today was, by necessity, a recovery day for me.

In place of my usual movie reviews, I thought I'd share a few of my favorite movie-related websites. I keep a running list of movies we'd like to see on an Excel spreadsheet (there's the engineer in me again!). I get ideas from current movies in the theaters, previews on DVDs, and suggestions from friends (thanks!). Before I add a movie to my list, I usually look it up to see whether it's any good:

• I really like All Movie. You can look up movie titles and read a brief summary of the film, a rating from 1 to 5 stars, plus other pertinent information, like length, attributes, keywords, and themes. Over the years, I've found that the ratings here generally match my own feelings about movies.
• Metacritic is another website I use frequently to look up potential movies. It gathers all the reviews that have been written about a movie in one database and applies a 0 to 100 rating to each review, so you can see the compiled rating from all reviews or read a specific review, if there's a certain newspaper or reviewer that you like. Metacritic also features reviews of TV, music, and games.

So, when I hear about a movie, I usually look it up on one or both of these sites and note the rating(s) on my list, if it sounds like something we'd like. I also note the length because there are plenty of times when we're too worn out to watch a long movie!

And, when Ken and I have questions about a movie or an actor or actress - as we often do since neither of us can ever remember anything! - we look it up on Internet Movie Database. This site is a wealth of information. So, when we recognize someone on screen but can't remember what other movie we recently saw him or her in, we go to IMDB. It also features news and trailers for new releases.

If you're looking for information on whether movies (or games or books) are appropriate for kids, check out this piece I wrote for Family Fun magazine on review websites for parents.

OK, now I need to get off the couch and make some dinner. I hope I have more energy tomorrow.

Just Coasting...

My kids are finally both back in school, but I'm still not getting much of anything done and am feeling rather useless.

I'm not horribly crashed, like I need to crawl back into bed and seriously rest, but I've had moderate CFS symptoms all week and am completely lacking in the kind of drive and motivation I need to actually get any work done. I can manage to lie on the couch with my laptop and do various mindless things, like blurt out my stream-of-consciousness thoughts on this blog, pay bills, and check my bank balance, but I've been completely unable to do what I really need to do - write new pitches and send them out to magazines or put together a large stack of insurance claims and mail them. It's like I'm kind of on autopilot, coasting, with absolutely no creative energy at all. It's frustrating, after finally having a quiet house to myself after so many weeks.

I guess it's just like this sometimes, right? I feel like I should be doing more, but I just can't get my brain out of first gear (or I guess it's in neutral if I'm coasting...).

I know I should stop putting pressure on myself and just go with the flow, but this to-do list keeps taunting me. I've tried to do some of the minor tasks, just to feel a small sense of accomplishment. It helps a little, but I still feel guilty, like I should be capable of doing more.

Just writing this makes me realize I'm probably sicker than I've been admitting this week and need to take it easy and stop feeling bad about it. sigh... In my pre-CFS life, I was always busy, always productive and well-motivated. Even after 8 years, it's still hard some days to accept that I can't do more. The past 6 months have been so rough. I hope spring brings on brighter days and more energy.

Third XMRV Study

I'm a little late on this - I was waiting for all the analyses to come out. Last week, another UK study on XMRV and ME/CFS was published. In contrast to the first one from the UK that was conducted by Wessley and his gang of non-believers, this study was conducted by some top UK CFS/ME researchers, including Dr. Kerr and Dr. Gow who both helped to identify the genes involved in CFS a few years ago (I participated in Dr. Kerr's genetic study). That's the good news.

The bad news is that this study failed to find evidence of XMRV in the CFS patients tested. So, the original US study conducted by the Whittemore Peterson Institute has still not been verified. This analysis article from Suzanne Vernon, Scientific Director of the CFIDS Association, does a good job of explaining exactly how this third study was conducted and why it may have failed to replicate the results of the original study. Bottom line is that we still don't know for sure whether XMRV is a part of CFS, that XMRV is very difficult to detect and can "hide", and that additional replication studies are needed.

On the plus side, if XMRV is proven to be implicated in CFS, there is a lot of work going on now to study retro-viruses like XMRV, as explained in this recent article in Science Daily that says a vaccination for XMRV may be easier to develop than for HIV.

On the home front, Jamie said he felt "good" this morning which was cause for celebration! I'm not feeling so good now, but at least I'm home alone in a quiet house - trying to rest. Yet another snowstorm is forecast for tomorrow, with estimates ranging from 4 - 18 inches! Wish me luck!

Movie Monday 2/22

I'm feeling a little better today, emotionally. Thanks for listening and helping me through my black mood this weekend. Your compassion and understanding soothed me. It still amazes me that I can just blurt out how I'm feeling here, and there are so many people who "get it."

Today was a little better for me, but Jamie was still home sick. He got up early this morning, showered and dressed for school, but was exhausted by the time he finished breakfast. Still, today was a bit of an improvement for him. He was able to sit up for a little while this morning and do a little homework.

I'm feeling awful right now because my afternoon nap was interrupted - I rely on that to get me through the second half of the day! I postponed my nap because Jamie and I were watching a lunchtime movie, and I was just dozing 0ff when the doorbell rang. It was a visiting nurse here to take samples of Jamie's blood for the UIC CFIDS study. With him home today, I had completely forgotten that it was scheduled for 3 pm today.

Anyway, with all this downtime, we watched a lot of movies last week:

• We watched Timeline with the kids Saturday night, adapted from one of my favorite Michael Crichton books. It's about some archeology students who get sent back in time to the castle in the Middle Ages that they've been working on in the present. Only problem is that they end up in the middle of the Hundred Years War. It's an exciting and suspenseful movie, not quite as good as the book (they never are!), but we enjoyed it.
• Last night, we watched King Kong - the original 1933 movie - with the kids. They were reluctant to watch a black and white movie, but they enjoyed it once we got into it. When Kong fist appeared, Jamie laughed, "Look at those graphics!" Ken and I explained that there was no such thing as graphics back then, that it was all filmed using models. Really, the special effects are pretty amazing for the time. We'll finish this movie tonight - the kids were ready for bed at 7:30 last night!
• Ken and I watched The Soloist Friday night. The book has been in my want-to-read stack for months now. The movie, starring Robert Downey Jr. and Jamie Foxx, was excellent. It's the true story of an LA columnist who discovers a homeless man playing the violin with surprising talent. He befriends the man and tries to help him with mixed success, but the relationship ends up benefitting both men. I thought it was very well-done, and I still want to read the book.
• Saturday night, Ken and I watched Imaginary Heroes, another dysfunctional family movie! This one begins with tragedy, as a 20-year old swimmer headed for the Olympic trials commits suicide. The movie follows his parents (mom is played by Sigourney Weaver and dad is Jeff Daniels) and brother as each of them tries to cope (in varying but all very unhealthy ways) with the death. As each of their lives spins out of control, family secrets are revealed and eventually they realize that they need each other. Believe it or not, parts of this movie are very funny, in a dark humor sort of way. I really liked the movie, though Ken thought it might not have been the best choice given how I was feeling this weekend!
  
• This morning, Jamie and I watched Invincible on TV. We've enjoyed the 70's soundtrack of this movie for years (I did a review of movie soundtracks a few years ago for Family Fun). It's based on a true story of a poor, downtrodden guy from Philadelphia (played by Mark Wahlberg) who tries out for the Eagles football team (their new coach is played by Greg Kinnear), against all odds (pro football mostly recruits from colleges). It was an inspiring movie with great music, and Jamie really enjoyed it.
• We turned the TV off so that Jamie could do some homework and I could do some writing, but we taped Radio, another football movie, to watch during lunchtime (it must have been football movie day on FX today). This movie is also based on a true story, about a mentally handicapped young man, played by Cuba Gooding Jr., in a small 1960's South Carolina town. The high school football coach nicknames him Radio (he loves radios) and takes him under his wing, involving him in the football team and the school. The community is slow to accept Radio - Jamie was appalled by how cruel some of the kids were to him - but the coach stands by him. The only problem is that our tape ran out before the end of the movie!! Now we have no idea how it ends, and the library is closed until tomorrow. Anyway, up until that point, it was very good.

So, a good week for movies (and books - Jamie read 5 books last week!), though a rough week otherwise. We were also very excited that another new season of Amazing Race started last week! We love that show and tape it every week.

Have you seen any good movies lately?

A Blue Weekend

I'm feeling blue this weekend. It sort of snuck up on me. Friday, I was worn out but looking forward to a weekend with my family. Saturday turned out to be another busy day. I waited too long to refill my Lyme meds and had to go to the drugstore and run some other errands. Ken went to the grocery store to pick up what I had ordered online Friday (yes, I finally did it, but our store no longer delivers; you have to pick it up now). I made soup for dinner and tried a new, easy recipe for homemade bread.

I'm not sure why, but by evening, I was starting to feel down. I think a big factor is that Jamie was still severely crashed yesterday. I can handle my own crashes much better than I can handle it when one of my kids crashes. It's so painful for Ken and I to see one of our boys badly crashed and incapacitated day after day after day and be unable to help him. This one has lasted 8 days so far for Jamie. He thought he felt a little better when he woke up Saturday morning, but by 9 am, he realized he was still exhausted and achy and unable to do anything. He spent another day lying on the couch, reading and watching movies.

We watched a movie with the boys, then Ken and I watched another after they went to bed. By the time he and I went up to bed at 11 pm, I could feel the blackness creeping in. Ken tried to comfort me, and suddenly, I was sobbing into my pillow. I finally took an Ambien, he went back downstairs to read for a while, and I felt even worse for ruining our Saturday evening together.

I'm still feeling down this morning. Jamie's a tiny bit better and is attempting a little school work (he's so far behind now!). The sun is shining, and it's a beautiful day. I know I should feel better, but I just don't. I still feel like I could burst into tears at any moment. What's wrong with me?

I desperately want to go outside and take a walk, but I'm tired and achy, so I know it's a bad idea. I did walk around our cul-de-sac when I went out for the newspaper this morning - the sunshine is so nice (even though we still have two feet of snow everywhere).

I know this is "just" CFIDS, that the depression is part and parcel of doing too much all week, and I'm probably a bit crashed myself. I know all that logically, but I still feel emotionally helpless and fragile. I guess there's nothing to do but wait for it to pass.

A Long Week...and An Award!

Sorry I've been so silent since Tuesday. This week turned out to be packed full and pretty exhausting. Besides the busy start to the week with Mardi Gras, Ken and I had somewhere to go every single evening - I'm used to lying low in the evenings. I also started and finished our taxes in record time by working on them all day Monday and Tuesday (I was motivated to get our refund back fast). And after a whole week of snow days last week, Jamie was home sick - badly crashed - all this week. Poor kid was flat on his back all week (still is). He and Craig both had stomach cramps for about 24 hours, so it was probably a virus that triggered this crash.

So, I've been pretty wiped out the second part of this week. I haven't gotten any work done, and I haven't had even 5 minutes with enough energy to read blogs (sorry!). Jamie and I have been watching old Lost reruns on DVD every day!

And, finally, I have been remiss in recognizing a blog award, The Sugar Doll Award, that Dominique at 4 Walls and a View gave me earlier this week! I'm not sure of the exact meaning of the Sugar Doll Award, but it sounds nice, and I appreciate it! I'm supposed to tell you 10 things about myself, then nominate some other deserving bloggers. It's too bad Dominique already received this award herself because I've really been enjoying her new very well-written CFS blog this past month!

So, I've been thinking of what 10 things to tell you. This is a bit of a challenge because, after 4 years of writing this blog, I've already told you an awful lot! I've been pretty open here, so you already know all kinds of facts about me - how I love reading, camping and the outdoors, and travel, that I'm from Rochester and used to live in New Orleans, etc. So, I've had to dig deep (and in some cases way back!) to try to come up with some things you might not know about me:

1. When I was 13, I decided I wanted to be called Sue (it sounded more mature, I thought), but most of my family still calls me Suzie to this day! I use Suzan for my writing, just because Sue Jackson seemed way too generic, but no one who knows me actually calls me Suzan...which is why I used Sue for this blog.
2. I have a sister who is 6 years younger than I am.
3. I went to England and France with my high school French Club when I was 16. I've been to England several times since then but haven't gotten back to France yet. I'm dying to take my kids to Europe.
4. I took dancing lessons from age 5 to 16, then a few classes in college - tap, ballet, and jazz. I still have the purple spandex one-shouldered jumpsuit I wore to dance to "Fame" when I was a teenager (don't ask me why I've saved it all these years!)
5. I drive a 1992 VW Cabriolet convertible - red with a black roof - affectionately known in our house as "the little red car." I expect it to last forever and put my fingers in my ears whenever Ken suggests otherwise.
6. Ken and I met at work, at the DuPont plant in Louisiana where we both worked. He was assigned to be my mentor when I started there!
7. I love to play games of all kinds. My best friend, Michelle, and I used to play marathon board games - Monopoly games that lasted for days, 30 games of Clue in a row, etc. My kids love games, too (I wouldn't have it any other way!), and my mom and I love to play Scrabble together.
8. I kind of like the vivid dreams that come with CFS. I enjoy dreaming and remembering my dreams, especially dreams of flying (but I don't like chase dreams or pee dreams).
9. I have a degree in chemical engineering from Clarkson University, a small engineering school in remote northern NY, near the Canadian border. My years as an engineer seem like a different lifetime.
10. I love to cook tasty, healthy meals for my family. I really hate when I'm too sick to cook. Cooking Light is my favorite source of recipes.

And I better get cooking now or we'll be eating dinner at midnight tonight!

Thanks for the award, Dominique! I nominate:

• Jo Blogs
• Living the CFS Life
• What's After 29?

What's After 29? isn't a CFS blog, but it's written by Lori, who many of you know for her blog, Living Chronically, about her daughter's struggles with CFS and celiac disease. This blog is just for fun, and Lori has a wonderful sense of humor! I hope you enjoy visiting all three of these excellent blogs.

(By the way, I know from my book blog that awards can sometimes be a bit of a burden if you're not feeling well - having to pass it along and include links, etc. in a blog post - so if you would prefer to just accept it graciously and not pass it along, I understand completely! No problem.)

OK, I am SO ready for the weekend...

(P.S. Moments after I clicked on the Publish button, I found out I was also nominated for the Sugar Doll Award from Robyn at "How Are you?" and Other Dumb Questions. Check out Robyn's awesome blog, written from the perspective of a young woman with CFS. Thanks, Robyn!)

HAPPY MARDI GRAS!!

Today is Fat Tuesday - Mardi Gras Day! If we were still living in New Orleans, everyone would be home from work and school today (and yesterday) - it's a major holiday there. Here, Ken had to go to work, and Craig is at school (Jamie is still badly crashed), but we still celebrate! Craig went to school with Mardi Gras beads on, we had our New Orleans CDs playing at breakfast this morning, and tonight, we'll go to a friend's house for our annual Mardi Gras Popeye's dinner (Popeye's originated in New Orleans and these friends lived there the same time we did).

The party on Saturday was great (check out my Mardi Gras tiara in the photo!). I felt better than I have at any Mardi Gras party since getting CFS - it was a really good day for me, by some miracle. We had about 15 adults here and 6 kids, and we served jambalya, red beans and rice, spicy shrimp, Zapp's potato chips, and King Cake and bread pudding with whiskey sauce for dessert. Food is the focal point for any New Orleans-style celebration!

Zapp's are made in a tiny factory in rural Louisiana and are the most amazing potato chips in the world! They make all sorts of wonderful flavors, but our favorites are Cajun Crawtator and Cajun Dill (if you like dill pickles, you will love these!). They are perfect for those OI salt cravings!! You can order them yourself at the Zapp's website or by calling 1-800-HOT CHIP (unfortunately, they can only ground ship - sorry for my overseas friends - we learned the hard way that the bags pop open like a gunshot with the pressure change of an airplane).

In my pre-CFS days, our Mardi Gras party was a much bigger affair - it grew to about 50-60 guests! We also went through a lot more alcohol in those days (I stuck to Barq's cream soda Saturday night - another local La. favorite), and partied into the wee hours of the morning. Now, everyone is gone by 10:30 pm! Honestly, though, I actually like the party more now. It had gotten so big that it was just too much work for Ken and I. Now, it's just close friends, and we have time to enjoy their company.

Back when we lived in New Orleans, Mardi Gras was a 4-day long party! We'd spend all day and night Saturday and Sunday going to parades and catching beads and cups and other assorted goodies, walking around the city, hanging out in bars, and going to parties. By the time we got home each night (or morning), we'd each be wearing so many beads that it would take an hour to untangle them and get them all off!

We always rested on Monday, then we'd meet our friends on Tuesday morning at 8:30 am at the Popeye's on St. Charles Street, where we'd eat spicy fried chicken and red beans & rice for breakfast! Then we'd find a good spot for the Zulu parade and hope to snag one of the coveted Zulu gold coconuts (no luck, though I once caught some Zulu panties!) We'd go to parades all day, then go home - totally exhausted - by about 5 pm. Wednesday at work was never very productive! Those were good times - I'm glad I got to experience all this when I was young and healthy! This photo is of Ken and I with my mom and her husband, Ed, during Mardi Gras (about 1989?). We always had lots of guests for Mardi Gras!

If you want to catch a glimpse of the Mardi Gras parades from the comfort of your laptop, check out the Parade Cam at nola.com. You can also see all sorts of slideshows and videos of parades and other Mardi Gras festivities at the site.

I guess I better get back to work for now. Hope you have a happy Mardi Gras!

Movie Monday 2/15

Well, we survived our big weekend! Mardi Gras party went great - more about that tomorrow. The boys were still wiped out today after staying up past midnight Saturday. Good thing they had yet another day off today for President's Day.

With our busy weekend, Ken and I didn't have a lot of movie time, but last week's two snow storms left lots of time for family movies!

• We watched Escape to Witch Mountain with the kids last week - my all-time favorite childhood movie, a 70's Disney classic! I remember going to see it at the theater with my best friend when I was 10 years old. We also watched the sequel, Return to Witch Mountain, which I had never seen before. It was pretty hokey and predictable, but we enjoyed them both!
• The boys and I watched The Young Black Stallion today while they were crashed. We'd seen it years ago, when they were little. This one is pretty short, but all of the Black Stallion movies are excellent.
• We watched August Rush with the kids the past two evenings (they were so exhausted Sunday night, they went to bed at 7:30!). It's a wonderful, heartwarming movie about an orphan boy searching for his parents through the magical connection of music. We all loved it.
  
• On Friday night, Ken and I watched Charlie Bartlett, an excellent movie about a teen boy (Charlie) who has been kicked out of every private school in the area and now has to attend public school. After getting beat up (and getting a swirly) the first day of school, Charlie comes up with a plan to become popular - he starts to sell the prescription pills his family psychiatrist gave him to other students. What starts out as an amusing, satirical look at the modern obsession with the quick fix turns more serious. Both Charlie and the movie turned out to have more depth than we first expected.

Have you seen any good movies lately?

What a Week!!

We've had a crazy week here in Delaware, with two record-breaking snowstorms, back-to-back. The governor declared a state of emergency two different times, for three days out of five this week, so we were literally housebound (all of us, not just me!) for most of the week. The kids haven't been to school since last Friday, and schools won't reopen until next Tuesday.

Poor Ken spent three days non-stop shoveling and snowblowing our driveway plus two others in the neighborhood - he's exhausted! I really hate not being able to help. I used to actually enjoy shoveling snow. I grew up in the snowbelt (Rochester, NY), and I used to like to clear our driveway before my dad got home from work. I did go out on Wednesday and tried to "just do a little," but after 15 minutes my heart was pounding so hard I thought it would jump out of my chest! I had to lie down on the front steps. And, of course, I was a bit crashed the next morning (though not as bad as I could have been).

The boys have held up amazingly well this week, even though they've been playing in the snow every day and helping to shovel most days, too. We've tried to stick to early bedtimes, even though there's no school, and alternating activity with quiet times (we played a lot of Monopoly and watched some movies!). Jamie's mildly crashed today, after they shoveled a neighbor's driveway yesterday, but he's not too bad.

Overall, I've been doing a little better the past two weeks, after a 6-month long relapse. I'm finally experiencing a few good days and fewer bad crash days. Let's hope it continues because we have a big weekend coming up - it's Mardi Gras time!

We used to live in New Orleans and have had an annual Mardi Gras party since moving to Delaware 20 years ago. We had to drastically cut back after I got CFS (we used to have 50-60 people attend!), but we've kept up the tradition on a smaller scale and with plenty of help from close friends. This is one of our favorite times all year! Problem is, with the entire state shut down most of the week, my plan to do a little each day is shot. Now we have to try to do all the shopping today (Ken's going to help after work), and I'll have to make the jambalya tomorrow morning. The bakery where I ordered King Cakes was condemned yesterday after the roof collapsed, but luckily, I was able to find another bakery that makes them nearby - tragedy averted!

Well, I've been lying here chugging down a big V-8 in preparation for a shopping trip, so I think I'll try getting up now. Wish me luck!

Update on My Low-Dose Naltrexone Treatment

I'm way, way overdo on this one! Lots of people have been asking me whether I'm still on low-dose naltrexone (LDN) and whether it still helps me. Looking back, my last update on LDN was April 2008, almost 2 years ago! If you're not familiar with LDN, I'd encourage you to read that post as well as this one.

Naltrexone is a drug that has been around for decades, approved by the FDA for use in treating alcoholism and drug addiction. Yes, I know this sounds strange so far! Naltrexone works by modifying the endorphin response in the brain. A couple of doctors discovered that naltrexone, when used in tiny doses, is an effective treatment for all sorts of immune system disorders, including MS, lupus, Crohn's disease, AIDS, and cancer. In very basic terms, the endorphin response causes a whole cascade of positive effects in the brain that help to normalize the immune system. All of this is explained in much greater detail (and much more effectively!) at the low-dose naltrexone website (the website is created and maintained for information purposes only by the doctors who pioneered the use of LDN and is not a commercial site). The results of studies using LDN in various immune system disorders have been amazing.

There have still been no official studies conducted of LDN and CFS (big shock, huh?), but we have a dysfunctional immune system, too, and it does seem to help some people with CFS, including me. There has been a small, pilot study at Stanford on using LDN for fibromyalgia, with excellent results.

As for me, I took LDN for 3 months in 2007 and got worse again when I went off it. In January 2008, I asked my doctor if I could go back on it, and I've been taking it ever since - two years now! As I explained in my earlier post on LDN, this is the only treatment in 8 years of CFS that has helped me significantly. During that same time period, I've also been on anti-virals - first Valtrex and now Famvir (I tried Valcyte earlier but had some serious side effects and had to stop - it's a very toxic drug). From what I've read, anti-virals and LDN work well together, though you can take either separately.

If you're a regular reader of my blog, you know that this past year was rough for me, especially the last six months. So, perhaps you're wondering - as I was - whether the LDN is still helping me. I got the answer to that in December when I ran out for a couple of days...I was worse without it and improved again when I went back on. My lengthy relapse has been due to my recent Lyme infection and treatment, plus exposure to various viruses this fall and winter, and I guess I would have been in even worse shape without the LDN.

I've talked to many other people with CFS who've tried LDN and have heard a wide variety of stories. Some, like me, have improved on LDN. Often, however, I hear from people with CFS who aren't able to tolerate LDN at its regular doses, just as many people with CFS are extra-sensitive to other medications. So, for most people with CFS, it is best to start out with a very low dose of 1 mg (or even 0.5 mg) per day. If it is tolerated, then you can raise the dose gradually. Unfortunately, some people with CFS can't tolerate it even at 1 mg. Typical side effects are vivid dreams and/or disrupted sleep. For most people, these effects go away after a week or two (I didn't have them at all). It's best taken before bedtime (the LDN website explains why).

Most people take low-dose naltrexone in a 3 mg dose. The LDN website says that 4.5 mg is the "optimum dose" for many people with auto-immune disease. I started at 3 mg and have stayed at that dose for 2 years because it works well for me. I tried going up to 4.5 mg and all of my CFS symptoms flared-up for the entire 10 days at that dose. I went back to 3 mg and felt good again.

I know of some people with CFS who have found that 2 mg or even 1.5 mg is their best dose. It takes some trial and error (with your doctor's help, of course).

You need a doctor's prescription for low-dose naltrexone. Not all doctors are willing to prescribe it because this is a relatively new development and an off-label use. Try sharing the information at the LDN website with your doctor. My regular family doctor won't prescribe it long-term and and my sons' pediatrician feels it's too new to try for my sons, so I get mine through my Infectious Disease specialist in NYC (she specializes in CFS).

Since regular naltrexone comes in 50 mg pills, you have to get LDN from a compounding pharmacy. They can provide either liquid or capsules in the dose you need. There are local compounding pharmacies in most areas, and the LDN website lists several that will ship LDN to you. I started out using my local compounder, but they could only supply me with the liquid form (which wasn't very convenient for travel). I now use Skip's Pharmacy in Florida - they're one of the ones listed at the LDN website. They have a lot of experience with LDN and are easy to work with. Just plan ahead for your refills, so you don't run out like I did!

Well, I guess that covers the basics. If you're interested in learning more, please read the LDN website. It is very, very informative. Anyone else out there using LDN or tried it?

Movie Monday 2/9

Yes, I know it's Tuesday already, but Tuesday evening is the first chance I've had to write my Movie Monday summary this week! Delaware got its second-biggest snowfall in history this weekend, so the kids have been home from school all week. Then, I had to drive Ken to an eye check-up in Philadelphia this morning which pretty much took up all of my productive time of day. Another foot or two of snow is forecast for tonight and tomorrow - it's looking like the kids may not get back to school this week at all!

Anyway, we did watch some good movies this weekend:

• We watched Indiana Jones and the Kingdom of the Crystal Skull with the kids. This is the "new" Indiana Jones movie that was released in 2008. We all enjoyed it, though the kids say they still like the original best. I have to say that Harrison Ford still did a good job playing the ultimate adventurer (he's 67 now!) and Shia LeBouf (one of the kids' favorite actors, from Holes) looks like he may be next in line to take on the Indiana Jones mantle....though the Internet Movie Database says that Harrison Ford's scheduled to be in Indiana Jones 5 in 2012! No question that Lucas and Spielberg make a great team.
• Ken and I watched No Reservations Friday night, a light but pleasant romantic comedy with Catherine Zeta-Jones and Aaron Eckhart. Zeta-Jones plays a control-freak chef whose life changes dramatically when her niece enters it (played wonderfully by Abigail Breslin). It was all pretty predictable and formulaic but still an enjoyable way to spend an evening - nothing dark or depressing in this one!
• Saturday night, we watched Rachel Getting Married. Toni mentioned this one last week, and I already had it sitting on my counter from the library! Anne Hathaway plays Kym, an edgy, very unprincess-like recovering drug addict who comes out of her in-house rehab for her sister Rachel's wedding. This is the ultimate dysfunctional family, and Kym is at the center of her family's dark past. Ken didn't like this movie. He said he hated all the bickering and thought it was very depressing. I enjoy a good hard look into the underpinnings of human behavior and family relationships, though, and I thought the movie ended on a hopeful note, that its overall theme was that terrible things sometime happen, but life goes on and healing does eventually occur.

We have another stack of DVDs here for this next snowstorm!

Have you seen any good movies lately?

Orthostatic Intolerance and ME/CFS

(Updated on 7/1/24)

What Is OI?
Orthostatic Intolerance (OI) is a condition that affects over 97% of people with myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) - in other words, almost all of us, though you may not even be aware of it, and it also occurs in many patients with fibromyalgia or Ehlers-Danlos Syndrome (EDS), or Lyme disease and other tick infections. OI is an umbrella term that means an inability to maintain a steady blood pressure (BP) and/or heart rate (HR) while upright and includes different conditions, including the two most common in ME/CFS patients: Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH). Both of these conditions exist outside of ME/CFS and are generally understood by some cardiologists and other medical professionals (though the term OI is used more often specifically in ME/CFS). Some people with ME/CFS have just one or the other, but many of us (including both of my sons and me) have both. And some patients have rarer types of OI conditions, where BP goes up or HR or BP jump up and down. It's all OI, an inability to hold blood pressure and/or heart rate steady while upright.

POTS occurs when your pulse rate goes way up when you are upright (standing or even sitting up). NMH occurs when your blood pressure drops while upright. Some people with severe POTS and/or NMH actually faint or feel dizzy or lightheaded, but for many of us with these conditions our "usual" symptoms just get worse and we feel sicker.

Why Does It Matter If I Have OI?
Even if you don't know you have OI, it is underlying many - sometimes most - of the symptoms you associate with ME/CFS (or with fibromyalgia or EDS or tick infections), including Post-exertional Malaise (PEM). It is a big part of what makes those with ME/CFS "crash" or worsen after too much exertion, and it makes all symptoms worse. The good news is that treating OI often results in improvements (sometimes dramatic ones) in all symptoms, allows you to be more active without crashing, and can greatly improve your quality of life.

Our Experiences Diagnosing OI
I read about OI during the early years of my own illness and shortly after we realized that our oldest son probably had ME/CFS as well, but I didn't think that either of us had OI. Neither of us had ever fainted or even felt light-headed, so I assumed it didn't affect us. Besides, both of us had normal blood pressure during routine office exams. I was very wrong.

My son and I went to see Dr. David Bell, one of the world's top pediatric specialists in ME/CFS, now retired, in December 2003. During our visit, he officially diagnosed our son with ME/CFS and confirmed my diagnosis (I'm lucky enough to have a family doctor who recognizes and understands ME/CFS). Then, he told me about OI. I told him I'd read about it but didn't think it applied to us. He was almost certain it did and asked if he could test my son in his office.

I was stunned by the OI test. Although a tilt table test is the formal method most often used by cardiologists for diagnosing both POTS and NMH, they can also be detected in a simple office test (which is quicker, far less costly, easier on the patient, and studies show may even be more accurate, since it mimics real-life conditions). He had my son lie down for 10 minutes, and a nurse took his resting blood pressure and heart rate. Then he asked him to stand up and stand perfectly still, leaning against a wall, without moving at all or even fidgeting or wriggling toes. The nurse took his blood pressure and heart rate every minute. Within less than 10 minutes, his feet turned purple (that's the blood pooling in lower extremities instead of circulating properly), he complained he was very hot (in western NY in late December!), and he started to feel sick. His blood pressure plunged, and his heart rate went way up. Dr. Bell ended the test after about 8 minutes; he said if they kept going, he would probably faint. He also said he wouldn't test me because I'd probably feel too sick to get the two of us home, but he was certain the results would be similar for me.

This is how OI often affects those of us with ME/CFS. Some people do feel dizzy or lightheaded (some even faint), but for many of us, being upright simply makes us sicker; OI worsens all of our symptoms. In fact, for many people, OI is behind most of our worst symptoms.

ME/CFS messes up our immune systems, endocrine systems, and nervous systems. The dysfunction in the autonomic nervous system (the part that regulates basic bodily functions) results in lower than normal blood volume and difficulty regulating our blood pressure and heart rate. Without adequate blood volume, our bodies have difficulty circulating enough blood to our hearts and brains, resulting in many of the symptoms we identify as ME/CFS.


How To Diagnose OI
As I mentioned above, many doctors diagnose POTS and NMH using a tilt table test (TTT), where the patient is strapped to a table that mechanically raises his or her head, a little at a time. Though the TTT is often considered the only way to diagnose these conditions, it has several drawbacks. It's very expensive, requires special equipment (and often traveling to a hospital or clinic), and is artificial, not reproducing exactly what happens in real life. It can also make patients very, very sick because you are intentionally triggering OI.

In contrast, an in-office standing test like Dr. Bell did for my son is quick and simple and can be done in any doctor's office in about 30 minutes or so. According to one study, it may actually be more accurate because it mimics real-life conditions, and the doctor can easily stop the test (as Dr. Bell did with my son) when the patient meets the criteria and/or gets too sick to continue (which is also meeting the criteria). Here are some very simple instructions for an OI standing test, developed by NASA, that you can take to your doctor. Just be aware that in some ME/CFS patients, OI can take a bit longer to show up and 10 minutes may not be enough. Dr. Bell's instructions and tips provide some extra guidance for this test, focused specifically on ME/CFS patients.

Finally, be aware that OI testing is not fool-proof. In fact, a study recently showed that OI testing only caught 47.5% of the cases of POTS in a single test. The study's authors recommended multiple OI tests. For this reason, it is very important for the doctor to observe and record the patient's reaction, as well as the data on heart rate and blood pressure. In my son's case, the purple feet, sweating all over, and general feeling of sickness would have proved he had OI, even if his HR was a few bpm below the criteria for POTS or his BP didn't fall quite enough to meet the criteria for NMH. Dr. Rowe said that a study in his clinic found that it took an average of 29 minutes for NMH to completely show up in ME/CFS patients. So, ask for the in-office test, but be aware of its limitations, and be sure the doctor observes your response to standing. And if you don't meet the criteria during testing, ask for another test on another day (share that study of the inaccuracy of OI testing with your doctor - it found the most accurate results with morning testing).

For more information (including more medical study references to share with your doctor), see my article on the ProHealth website, What is Orthostatic Intolerance and How to Diagnose It.

You may also find another blog post useful, Challenges in Diagnosing OI, which goes into even more detail on some of the problems you might encounter in trying to diagnose your OI and how to overcome them. It covers topics like what kind of doctor to see, how to conduct the test so it is most accurate, and tips for both doctor and patient.

How To Treat OI
The good news is that treating OI is fairly easy and often brings dramatic improvements in all ME/CFS (or fibro or EDS or Lyme) symptoms. It's been life-changing for both my son and I, allowing us to live more normal, active lives again with few post-exertional crashes. Two ways to treat OI are to increase blood volume and/or improve constriction of blood vessels to help circulate blood better. The easiest way to increase blood volume is to ingest HUGE amount of salt and fluids. I can't emphasize this enough! Sodium and fluids are critical for people with ME/CFS (check with your doctor first to be sure you're not one of the rare people with ME/CFS who has high blood pressure).

Next time you feel particularly sick or have a racing heart, drink a large glass of V-8 or other tomato or vegetable juice (lots of sodium!), Gatorade, or even a glass of water with a 1/2 teaspoon of sea salt in it (it's not so bad with lime in it). It won't cure you, but it helps. I always drink a big glass of V-8 juice before I go to the store to help keep my blood pressure and heart rate steady while I'm upright. My sons used to rely on Gatorade, but when the sugar and artificial colors started to adversely affect them, they switched to GU Brew tablets - they are sweetened with stevia, have no artificial colors or flavors, come in different flavors, and you just add them to water to create a balanced electrolyte drink. My sons also both took salt tablets while they had ME/CFS (one is recovered now and one still takes them). We have always used Thermotabs (we buy the 3-pack to save money) but I've also heard from many patients who are happy with SaltSticks - just be sure to take salt tablets with food because some people get nauseous taking them on an empty stomach. See additional links below for all of these products. This is just another crazy aspect of ME/CFS - the rest of the world is trying to reduce sodium intake while we need to intentionally try to make ourselves bloat!

Kids and teens often respond very well to a prescription medication called Florinef (fludrocortisone) (it rarely works well for adults, though it is worth a try). Its sole effect is to help the body hold onto more salt and fluids, and it is used in tiny amounts. Florinef, in combination with LOTS of salt and fluids, was like a miracle for my two sons. In 5th and 6th grades, our oldest son was bedridden over 50% of the time; he had a home tutor for two classes and made it to the other three about 60% of the time. After starting Florinef, he was able to return to school full-time in 7th grade, rejoin band, and play soccer again. For our younger son, whose ME/CFS was much milder, Florinef plus salt and fluids left him symptom-free about 90% of the time; he rarely even had post-exertional crashes after starting Florinef.

A couple of helpful hints with Florinef: you are supposed to start with a low dose and gradually increase, and you may not see any effect at all until you get to the right dose for you or your child. Some children I know started with too high a dose and had side effects but did well with it once they started low and gradually increased. We did that but were ready to give up on it after several months with no effect when Dr. Bell advised raising the dose one more time, to 0.2 mg (2 pills) daily - it was like someone had flipped a switch! When our son got older, he again increased his dose to 0.3 mg daily. Also, Florinef only works with large amounts of sodium and fluids. Our boys drank 2-3 liters of Gatorade every day (now the older one drinks about that much water with GU Brew in it). If one of them skips his electrolyte drink or doesn't drink enough, he feels worse the next day. Finally, Florinef alone isn't enough for some people; Midodrine (a vaso-constrictor) is sometimes added.

Unfortunately, Florinef almost always helps kids and teens and rarely works on adults, but there are other medications that may help adults (and kids, too), particularly low-dose beta blockers. Beta blockers work by blocking certain hormones in order to keep heart rate down and stabilize blood pressure. The first time I took one, my heart rate decreased about 30 bpm in the very first hour, bringing it down to normal levels for the first time in years! That alone allowed me to be more active without going over my limits and causing a crash/relapse. Starting beta blockers was another life-changing treatment for my older son and I (read more at the link). There are almost 40 different kinds of beta blockers available, in a wide variety of doses, so it can take some trial and error to find just the right one for you (always start with the lowest dose), but it is well worth the patience and persistence. More information in my post on beta blockers. They have allowed us both to be much more active, without post-exertional crashes. To learn more about WHY this works and how to use a heart rate monitor to help quantify your limits, read my post on Heart Rate and Post-Exertional Crashes in ME/CFS. Both my son and I now rarely crash from over-exertion and have greatly improved physical stamina. I can now walk for over an hour...with no crash after!

Some medications that you may take for other reasons help OI: for example, birth control pills and SSRIs (a type of anti-depressant) help increase blood volume and decongestants (particularly pseudoephedrine aka Sudafed) are vaso-constrictors. In fact, if I have something to do in the evening (when my beta blockers are wearing off), I sometimes take 2 Sudafed to help with OI.

Besides ingesting more salt and fluids and trying medications, some simple adjustments help, too, like moving your legs around when you have to stand still. I may look strange standing in the grocery store line flexing my leg muscles, standing on tiptoes, and otherwise fidgeting, but it helps to keep the blood from pooling in my feet. Just being aware of OI can help you. This is why you feel better when lying down than when standing up. Keep your feet elevated while sitting whenever possible (we now have 6 recliner seats in our family room, between chairs and couches!). You can also help to improve blood circulation and prevent pooling in the pelvis and legs without medication by wearing compression garments like knee socks (plain or in cool colors), tights (women's and men's) or compression shorts (Spanx work great!) - in addition to the links here, there are more at the end of this post for more options.

For more information, see my article on ProHealth,  How To Treat Orthostatic Intolerance, and for more detail and lots of tips from experience on how to make treatments (especially Florinef and beta blockers) work best for you (they can all take some trial and error), see my blog post, Challenges in Treating OI.

More Information on Orthostatic Intolerance
A wonderful pediatric ME/CFS specialist at Johns Hopkins, Dr. Peter Rowe, first discovered OI in his pediatric ME/CFS patients and pioneered its treatment. There is an excellent article on diagnosing and treating OI written by Dr. Rowe that I highly recommend you read and share with your doctor. The article covers both diagnosis and treatments, including medications, sodium intake, and lifestyle changes. There is also an excellent summary of OI on Phoenix Rising that includes most of Dr. Rowe's information. Dr. Rowe is an amazing person - although he's rarely able to take on new patients, he's very willing to work with your own pediatrician or doctor through e-mail and phone calls. He spent hours on the phone with our sons' pediatrician, helping her to become comfortable treating OI in ME/CFS; she's now our own local expert! Though I highly recommend the article, especially for sharing with doctors, you can also watch Dr. Rowe's webinar on OI. And I wrote my own 2-part article on Orthostatic Intolerance for the ProHealth website that includes the research studies the information is based on, so you can share that information with your doctor (click References at the end of each article to view and print them) - Part 1 is on Diagnosing OI and Part 2 is on Treating OI.

And even with all that, I wrote two more blog posts on Orthostatic Intolerance because although almost all of us have some form of it, it's not always simple to detect it or to find exactly the right treatment(s) for you, so check out Challenges in Diagnosing OI and Challenges in Treating OI, both filled with loads of useful tips based on research and personal experience (from both my family and other patients).


Well, I think that covers the main points, but I urge you to read some of the extra information linked to here. Treating OI can result in great improvements for ME/CFS, fibro, EDS, and Lyme patients. It's one of the top areas that should be addressed, along with correcting sleep dysfunction and immune dysfunction.

Ironically, as I was sitting up on the couch typing this (in 2010, before I started beta blockers), I began to feel hot all over and sick, and I realized my own OI was acting up! I finished this post lying down, with my laptop on my lap. Once you understand OI and recognize its symptoms, you have more control over your ME/CFS. OI symptoms are your body's way of telling you that it can't circulate enough blood to the brain and heart and that you need to lie down. I think I'll also drink a V-8 before I go to pick my son up. Cheers!

NOTE: That last paragraph was written back in 2010. Now, with beta blockers, I am easily able to sit up all day without my symptoms increasing and no longer need that pre-store V-8, though I still sometimes use that strategy if I'm feeling poorly or will be especially active. With low-dose beta blockers, I can even exercise now! I have worked up to being able to manage up to 90 minutes (sometimes even 2 hours!) of walking or hiking at a time - wearing my heart rate monitor to stay below my AT. I can also do some weight training now, which has further improved my condition overall. Crashes due to over-exertion have become very rare for both my son and me.

For more information, see these resources:

Dr. Rowe's OI Summary Brochure (good for sharing with doctors)

My own 2-part article on Orthostatic Intolerance, published on ProHealth (also good for sharing with doctors, as it is footnoted with scientific references)

Heart Rate and Post-Exertional Crashes

Challenges in Diagnosing OI

Challenges in Treating OI

Tips on Using Beta Blockers and Finding the Right One for You

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