Monday, February 25, 2013

Movie Monday 2/25

My son, Craig, is still pretty much incapacitated - knee surgery and a second sinus infection have triggered a severe CFS flare-up, way beyond what he usually experiences, so we have been watching lots and lots of TV and DVD's!

Like comfort food (which I have been making a lot of!), Craig likes comfort movies - old movies (especially comedies) he has watched dozens of times before. Perfect when you are on pain killers, right?  Last week, he watched (again) Napoleon Dynamite, The Birdcage (one of the funniest movies ever made), Mrs. Doubtfire, RV, and Grown-Ups (several times!).

This weekend, Ken and I finally got him to watch a movie he'd never seen before, The Blues Brothers. Can you believe I've never seen it before either? It was released in 1980, and I had the soundtrack album in high school, but in 30 years, I'd never seen it. This may sound silly, but I didn't realize it was a musical! I really enjoyed it, especially the musical guest stars/cameos, like Aretha Franklin playing a diner owner who suddenly starts belting out "Think" or Ray Charles as a blind music store owner who sits down at the keyboard and pounds out a classic. Even Craig was excited to see the real Cab Calloway sing and dance (his school shares a building with the Cab Calloway School of Arts). This movie is just a lot of fun - music, dancing, and comedy by an all-star cast.

I also brought home a bunch of old sitcoms on DVD for Craig. So far, he loves Mork & Mindy and Roseanne (I knew he'd like seeing three cast members from his favorite The Big Bang Theory).

Ken and I have discovered a new show, The Americans (FX), about a typical surburban couple in 1981 with two kids who are really undercover Soviet spies. It's excellent (though quite violent) with a good sound track. The only problem was that after watching the first episode, I dreamed about fighting off spies all night. In my dreams, of course, I was paralyzed and couldn't scream, so I kept waking Ken up in the middle of the night with little squeals and squeaks as I struggled to get away and scream!  Ah, the joys of CFS, huh? I usually avoid watching anything suspenseful before bed, but this was just so good!

Have you seen any good movies or TV shows lately?

(If you are interested in what we are reading this week, check out the Monday post on my book blog.)

Saturday, February 23, 2013

Post-Surgery Recovery

My son is the one who had surgery a week ago, but both he and I have been trying to recover this week. It's been a rough month here, especially for him.

Our 15-year old son has missed 3 of the last 4 weeks of school (and 6 weeks total so far this year). First, he had a week-long crash after a snowboarding weekend. He has the mildest CFS in our house and is normally symptom-free and can do anything he wants, as long as he takes his medication. So, he can handle a sleepover or a day of snowboarding...but apparently, two sleepovers in a row with a full day of snowboarding in between is too much!  It's also possible there was a viral trigger involved because he was congested that week.

He went back to school the next week, but by the weekend was feeling bad again. That turned out to be bronchitis and a sinus infection - because of his CFS, infections like that just totally knock him out, so he missed another week of school. He felt better by Thursday night, just in time for his knee surgery on Friday! His congestion was gone and his energy was back, so we went ahead with the scheduled surgery (he had two days off from school so the timing was critical).

So, he spent this last week trying to recover from surgery. We'd taken all the right precautions, notifying the surgeon and anesthesiologist of his CFS and orthostatic intolerance (check out this previous post for advice plus a link to an excellent article to print if you are having surgery), but he still had a rough time. I guess surgery is just a tremendous stress on the body, triggering a severe CFS flare-up. The surgery itself was disappointing because the surgeon discovered that his previous repair didn't hold, and our son is going to need a third surgery.

I crashed after his surgery, too! We had to get up at 5 am that day and spent most of the day at the hospital, sitting in various uncomfortable chairs. They didn't discharge him until mid-afternoon, by which time I was starving and exhausted. So, we both spent the next few days on the couch, recovering.

Instead of getting better this week, he seemed to be getting worse and developed a mild fever and some congestion about mid-week. It is always so hard to tell the symptoms of "just" CFS from an actual infection, but by Friday, I decided his pediatrician should take another look at him. She said the same thing - the smoldering fever, swollen glands, and exhaustion could be a lingering CFS crash, but given his history, his susceptibility to bacterial infections (like all people with CFS), and swollen sinuses, she decided it was most likely a sinus infection and switched him to a different antibiotic. He was already perking up a tiny bit last night, so I am hoping we are on the right track now.

That poor kid has been through so much! He started his freshman year of high school so excited and eager; he even made the soccer team. Then, on the last day of try-outs, his knee finally gave out for good. Instead of playing soccer for his school and enjoying various activities, he's had two surgeries, is struggling to catch up on missed work and is missing out on everything else. We are trying to stay positive, but watching your child suffer day after day is just heart-breaking.

Besides that, I have been totally exhausted and overwhelmed, focused entirely on taking care of him and not getting much else done or taking care of myself. I have had a case of thrush for 3 weeks that won't go away. After 3 weeks on Diflucan with some improvement but still lingering symptoms, my doctor ordered some lab tests yesterday to find out exactly what kind of yeast we're dealing with so she can choose a targeted treatment. I'm sure that is adding to my own CFS flare-up, along with countless trips to doctor's appointments, labs, the drugstore, and the grocery store. Teen boys eat a lot, especially when they are stuck at home!! It felt like I spent all week standing at the sink, doing dishes.

So, I'm sorry I haven't posted much here lately. I have hardly written anything at all this past month, so don't take it personally.

We are trying to keep our senses of humor. Last night at dinner, our son was mock-complaining about spending a lame Friday night watching DVDs with his parents, so I started singing "It's a Hard Knock Life" from Annie. He cracked up and said, "Our life would make the crappiest musical ever!" We all got a laugh out of that and took turns coming up with songs about going to the doctor, lying on the couch, etc. ("Lying on the couch" goes perfectly to the tune of "Master of the House" from Les Miz).

Sometimes, you just have to laugh, right?

Tuesday, February 12, 2013

Happy Mardi Gras!

It's Fat Tuesday - Happy Mardi Gras, everyone!

We used to live in New Orleans, so we celebrate Mardi Gras in high style here at our house. Since CFS, we have had to scale back all of our celebrations, including Mardi Gras, but we have adapted and found ways to enjoy this - and other holidays - while staying within our limits.

My mom raised me to celebrate even the little things in a big way, and I have adopted her mindset. My kids have loved all of our traditional celebrations, even when they were too sick to do much else. Especially when dealing with chronic illness, we all need these moments of joy and special occasions in our lives to lift our spirits and remind us that life is meant to be enjoyed!

We used to have over 50 people over for a huge blow-out Mardi Gras party every year that would last into the wee hours of the morning. Now, we have just a few close friends over, they all help out, and everyone is gone by 10 pm!  But we are still keeping our tradition alive, and it's something we all look forward to.  On this Weekend Cooking post at my book blog, I wrote about the foods we make for Mardi Gras, along with a list of ways to celebrate the holiday no matter where you are (or what your restrictions are). It's not too late - there is still time to ask a friend or family member to bring home a King Cake or some Popeye's tonight!  The parades are over, but you can still check out the Jackson Square cam to enjoy New Orleans' Mardi Gras vicariously.

And later this week, we'll take down all the purple, green, and gold decorations and replace them with red hearts to celebrate Valentine's Day!

Any occasion will do, really - add a little joy to your life with a celebration this week!

My boys and a friend, 2006

Monday, February 11, 2013

Movie Monday 2/11

We had a very busy week and weekend, culminating in our annual Mardi Gras party Saturday evening. In the old days, we'd have over 50 people here! It's a much smaller affair now, and I get lots of help from friends, but I still felt hungover Sunday, even though I couldn't have any beer at the party!  But it was fun and good to see our friends.

So, we only had time for one movie last week, Friday evening:

My son and I have been wanting to see Pitch Perfect for a long time, and all three of us thoroughly enjoyed it! It's a musical comedy about a college a cappella group that is trying to spice up its tired old routines. Beca, played by Anna Kendrick, is not happy about being at college; she is there because her father insisted on it, at the college where he teaches, but she is not eager to join in on campus life. She wants to move to LA and be a DJ, so she gets a job in the campus radio station. Her father says that if she joins one club and really gives college a try, she can leave if she doesn't like it after a year. So, Beca reluctantly joins the all-female a cappella group whose co-leader has been pestering her since she heard her sing in the shower. The traditionally prim and proper group needs 8 new members after its seniors graduated, and the group they manage to round up is very un-traditional - a group of diverse misfits with good voices. This movie is just pure fun - lots of laughs, a great cast, and wonderful music. My favorite movie website lists its mood as "pick-me-up," and that is perfect - pitch perfect! My son loved the music so much that he immediately downloaded the soundtrack from iTunes. A great choice for Glee fans!

Have you seen any good movies lately?

Sunday, February 10, 2013

Second Successful LDN Study for Fibromyalgia

Great news!

Stanford University has finished its second study on treating fibromyalgia with low-dose naltrexone, with very good results and no side effects reported.

My son and I both take low-dose naltrexone (LDN) - I have taken it for over 5 years - and it has helped us both. Here is a blog post on my own experience with LDN.

Here are two excellent websites for more information on LDN. Both include details on exactly how LDN works, and links to research studies on its use (of course, there have been no studies yet on LDN and ME/CFS!):


LDN Science (check out the video on the homepage that shows how LDN works)

Also, a pharmaceutical company has purchased the patent for LDN (at 4.5 mg) and has applied for FDA approval. Since this is a different dose of a drug already on the market for decades (naltrexone at 50 mg), approval should come quickly. Then, LDN will be available through any drugstore rather than having to go through a compounding pharmacy. This will make the treatment far more appealing to mainstream doctors, and the company has pledged to keep the cost reasonable (at less than a dollar a day).

This is all great news for CFS and FM patients!

Tuesday, February 05, 2013

Movie Monday 2/4 (on Tuesday)

Oops...I seem to have missed Monday....and almost Tuesday, too! I had 4 back-to-back appointments yesterday so had no online time at all. Whew, long day. And another one today - working on taxes, on the phone with Medco for 90 minutes (and still didn't resolve the problem), and taking my son to see his knee surgeon and get another MRI. Rough week so far!

So, let's talk of happier weekends and movies!

We enjoyed our last weekend with our oldest son still at home. He moved back into the dorms Sunday (but came back to watch the Superbowl with us!). My family continued to be totally wrapped up in TV shows last week - we found yet another one we love - Heroes. But, I stopped at Redbox for a movie on Friday and didn't take no for an answer!

We watched Moonrise Kingdom, and we all enjoyed it (Jamie, 18, and I especially loved it). It is funny, heartfelt, sweet, adventurous, and very quirky but in a good way. It is set on a small island off the New England coast in 1965. Two misfit kids - Sam, an orphan, and Suzy, who feels out of place among her family and her peers - have both been labeled "troubled." They find kindred spirits in each other and plan to run away together. Their disappearance sets off panic with Suzy's family and Sam's scoutmaster. The movie is filled with top stars - Bill Murray, Bruce Willis, Frances McDormand - and shot in a sunny vintage sort of style, with all the cool clothes and accoutrements of the 60's, like Suzy's mini dresses, knee socks, and portable record player. It's all somewhat tongue-in-cheek and lots of fun but heartwarming as well.

Have you seen any good movies lately?

Sunday, February 03, 2013

New ME/CFS Treatment: Manual Physical Therapy

A series of articles was recently posted on the Solve CFS (a highly recommended source for the latest news in ME/CFS research) that prompted me to tell you a bit of what I know about an exciting new way to help even severely disabled ME/CFS patients.

Dr. Peter Rowe, a well-respected pediatric CFS/OI expert at Johns Hopkins, has developed (along with local physical therapists) a new manual physical therapy process. You can read about it in these two articles:  Part 1 and Part 2.

To be clear, this is NOT Graded Exercise Therapy. The manual therapy starts with the patient in an entirely passive role, lying down, and the therapist very gently moving the patient's limbs and other body parts. It can be done on severely disabled patients and is extremely slow and gentle, with a goal of reducing sensitivity in the nervous system and avoiding any post-exertional consequences.

We have seen the success of these techniques up close. A good friend of ours, a 16-year old girl, went from bed-ridden to attending school full-time, thanks to this manual therapy and beta blockers. Before treatment, she was in constant pain, and now she is not only mostly pain-free and going to school every day but also able to exercise - riding her bike like any normal teen!  The difference is absolutely amazing.

The best part is that you don't have to wait for this treatment to become available. Dr. Rowe will review the process and how to go about it with your physical therapist over the phone - he has done this for many of our local CFS patients already. Also, read the comments section at the end of the Part 2 article, where there is guidance on finding a qualified PT who is trained in these methods.

Good news all around!