Vacation and Re-Entry

One of my favorite things in Maine - the beautiful coastline!

I am finally back home and back online. Sorry it has taken me a while to return to my blog, but the past week and a half have been incredibly hectic and exhausting. We moved my oldest son back into the dorms on Sunday, and my younger son started back to high school yesterday, so I finally have some QUIET writing time again! Here's what I've been up to and what I've been thinking about managing vacations - and normal daily life - with ME/CFS.

Our home away from home!

Let's start with vacation. We had a great trip - two weeks spent camping (we have a pop-up camper), first in Cape Cod and then in Maine, mostly in Acadia National Park (one of my favorite places on earth!). Camping with a trailer is a great way to travel for someone with CFS - you basically have your own little home with you all the time! We returned on a Thursday evening, did a few loads of laundry, unpacked and quickly repacked and left again Friday afternoon for a weekend with extended family.

From a CFS perspective, I did really well on vacation, as is usually true. This year, with beta blockers keeping my heart rate down to normal levels and the extra stamina and conditioning from exercising (cautiously) all year, I was able to do some amazing things with my family. We hiked up to the tops of mountains (small ones when I was along, but mountains nonetheless!), walked around quaint coastal towns, and went sea-kayaking for 2 1/2 hours! I hiked almost every single day of the trip. I know - incredible, right?

The trail goes up THERE?

How did I manage so much physical activity? Several strategies helped. In the morning, when I was along, we chose shorter, easier hikes and walks, and the kids (and sometimes my husband) did the more challenging, heart-pounding hikes in the afternoon while I napped. I always wore my heart rate monitor. On some of those uphill trails, leading to mountaintops, my heart rate would hit my AT every 5-10 minutes, and I would have to stop and sit and wait for it to come back down again. A bit tedious at times, but my family is wonderfully understanding and never complained, and I was thrilled to be able to participate in one of my favorite activities, hiking. I also discovered that it was best for me to hike in the mornings - usually my best time of day anyway - because of the dosing of my beta blockers. I take them before bed (that way, they can help with sleep and I wake up able to get moving right away). A few times, we tried an evening hike, and my heart rate was noticeably higher because my beta blockers were wearing off.

On top of Beech Mountain, Acadia Natl Park

I also stuck to my normal routines, no matter where we were or what we were doing. That means getting to bed at a reasonable time (because I can't sleep in the morning no matter how late I stay up!) and taking my daily nap. I started the daily afternoon nap as a preventative measure years ago, but I have found that it is absolutely essential for me and helps to prevent crashes. If we were driving in the car during the day, I had to nap in the car - difficult but not impossible. And, as I mentioned earlier, beta blockers are the #1 reason that I can be this active now - they keep my heart rate down to normal levels so that I can manage some moderate exercise without crashing.

I thought a lot about why I can't exercise this much at home. I have goals to walk 3 times a week and to do some light weights twice a week, and I have trouble meeting those goals. Some weeks, there's not a single day when I have enough extra energy for a short walk. I think the difference is all the other daily activities I must do when I am at home. Just the ordinary aspects of daily life (the stuff that healthy people don't even think about) are often too much for me at home - laundry, dishes, cooking meals, running errands, taking the kids to doctor's appointments, getting groceries...whew! Choose whichever CFS analogy you like best - spoons, energy envelope, etc; I use them all up on this stuff and have nothing left for exercise that I find pleasurable and that might actually be beneficial in increasing my stamina.

Relaxing around the campfire with my sons

I also think that stress has a role in this equation, too. On vacation, I have few responsibilities or pressures. Since we camp on our vacations, our trips are mostly digital-free zones (though my sons just recently got smart phones). I like to vacation this way - no e-mail, no Facebook, no blogs. This, coupled with leaving the to-do list at home!, results in a true vacation for me - no obligations, no worries, and hence, little stress.

The only two days that I crashed severely during this entire time away were the two days following a day of packing, laundry, etc. - the first day of our trip when we stopped at my sister's house (I had to go back to bed after breakfast which she definitely did not get) and the first day of the family visit, after unpacking and re-packing in just 18 hours. That is even more significant when you look back on how physically active I was during the rest of the trip! I hiked for over an hour many days, paddled for more than two hours, and those things didn't make me crash as badly as packing and racing around the house.

Sea kayaking near Bar Harbor, ME

So, of course, re-entry to normal life last week was rough. To make matters worse, we had just one week until school started, so my week was packed full of obligations - doctor's appointments every single day (many hours spent in waiting rooms!), driving my son back and forth to soccer practice and PT, unpacking, laundry, getting groceries, etc. Yeah, I was in bad shape last week! Just exhausted every day, short-tempered with my family because I felt so awful, and sleeping poorly because I did too much during the day - you know how that vicious cycle goes!

I don't have any answers here, just these observations. I don't know how to do less at home. I mean, certain things just have to be done, especially when you have a family, you know? Summer is always toughest on me, with my kids at home. Yesterday was my first day with them both at school, and it was such a relief! I was able to slow down, savor the quiet, rest as much as I needed to, and even begin writing again. I am hoping to use this time to get back into some healthier habits - resting more so I can manage more exercise (I know that sounds like a paradox but you understand, right?), spending more time with friends, lowering my levels of stress. I'm open to any ideas!

I hope you've had a good summer and are also looking forward to fall. Enjoy the vacation photos!

We saw many gorgeous sunsets in Maine.

Leave of Absence - August

Just wanted to post a quick note so that no one worries about me!

We have a crazy busy month coming up, with vacation (yes, we get to go!) and all the exhausting prep that goes with it, a big family gathering, and getting the boys ready for the return to school/college. So, I probably won't be posting much here in August. When we vacation, we camp and are mostly tech-free (that's part of the point) and once we get back we will be very busy, so I won't be checking in for a while.

For those of you who've been following our recent medical saga, my husband's eye surgery went very well and was the best possible outcome. He had no new retinal tears, no sign of retinal detachment, and the bleeding was just from a broken blood vessel connected to an old repair. A quick laser repair did the trick, and he is now recovering and seeing a little bit better every day. Thanks for your kindness and concern this past week.

We're still not exactly sure when we'll be leaving on vacation, and we need to come back a bit earlier than expected, but the doctor gave him the OK to travel, and we are thrilled that we will have our little getaway - we've waited 14 months for this!

So, I'll post again when things settle down here, toward the end of the month. Hope everyone enjoys a happy and relaxing August!

Movie Monday 7/29

So, our sons were gone all last week, sailing with their grandparents off the coast of Rhode Island, along with their cousins. I really needed the time to myself, though the week at home didn't turn out quite the way my husband and I had envisioned it. He is in surgery right now, for his eye, so he could only see out of one eye last week and had a bad cold as well (more on all that tomorrow, once we know more). So, we spent a lot of time relaxing with movies and TV:

On my last night alone, I watched Smashed, a movie about hard partying woman who gradually realizes that it's not all fun and games and she has a serious problem. Puking in front of your kindergarten students tends to have that effect. It was an interesting movie and well done, though somewhat depressing. She does seek help and eventually begin to pull her life back together but not without some significant bumps in the road. It does end on a hopeful note, but it's a serious and sometimes disturbing story.

After Ken got home from his trip, he and I watched The Impossible, a movie about the 2004 tsunami in Thailand. The story focuses on a British family - the parents are played by Ewan McGregor and Naomi Watts - who are vacationing at a beautiful, secluded resort when the tsunami hits without warning. This is a heart-pounding, edge-of-your-seat movie from beginning to end! The visual effects are just stunning, and seeing what this family went through is heart-rending and terrifying. We were both captivated by the movie from the first moments to the last.

With the kids away, Ken and I also caught up on some TV shows that we like. We watched the first few episodes of the new season of Perception, an excellent show about a man with schizophrenia who helps the FBI, played fabulously by Eric McCormack. We also watched a few recent episodes of Graceland, a new show about a group of law enforcement officers from different agencies, all living together in a California beach house and working undercover to put a dent in the drug trade. It took us a while to get into this very fast-paced show, but we are hooked now. And we watched all of the episodes so far released of Under the Dome, a new mini-series based on Stephen King's massive novel. Ken read it, and I didn't, but we are both enjoying the show, about a town that is mysteriously cut off from the rest of the world by an invisible but impenetrable dome.

Have you seen any good movies or TV shows lately?

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

Listening To Your Body

As most people with ME/CFS quickly learn, listening to your body is probably the most important thing you can do to improve your quality of life and prevent constant, unpredictable crashes. Unfortunately, it is also the hardest thing to do. Even after over 11 years with this illness, I am constantly relearning this important lesson.

I am alone this week - my kids are spending the week in Rhode Island, sailing with their grandparents and cousins - so the level of noise and chaos around me have quieted down enough that I can actually hear my body again! I had a really bad week last week. My husband was traveling, so I was on my own to get unpacked from our camping trip and get the kids ready for their trip. Now, they are 15 and 18, so they did their own packing and even loaded the car. But with them around, I still had plenty to do, plus two extra trips to the doctor for my son's ear infection, two trips to PT for his knee, many trips to the drugstore, and an exhausting trip to his school to turn in his sports physical forms (the main office is a long walk down the hall and up two flights of stairs, plus the front entrance was closed for construction!). Anyway, I won't bore you with all the details (really, there's more), but the bottom line is that I went way past my limits last week.

When I finally got back home on Saturday after dropping them off (a 4 1/2 hour return trip on my own, stuck in traffic), I was a mess. I completely collapsed and spent the next few days lying on the couch. It was such a huge relief to have no one to take care of but myself! I realized this weekend that I expend an enormous amount of energy simply taking care of food for our family - planning meals, going to the grocery store, cooking, cleaning up afterward (my husband helps with dinner clean-up). Realisticially, that probably takes up a large portion of the limited stamina I have available each day. It's important to me, though, to have healthy, tasty meals for my family, and I actually enjoy cooking, so I'm not sure that can change much.

I am determined, though, during this week alone, to listen to my body and stay within my limits. It's still incredibly difficult, after all these years. While I am attuned to the symptoms that are big signs of danger for me (sore throat, flu-like aches, exhaustion), there is a much louder voice in my head saying, "But you have to do XYZ..." And normally, there is an even more persistent, real voice next to me saying, "Mom, can you take me to...(fill in the blank)." I have learned some lessons over the past 11 years. I usually know when it needs to be a Plan B day. But I still tend to go past my limits almost every day.

The interesting thing is that my limits have greatly expanded from when I first got sick, but as I am able to do more, I still keep doing more than I should! Of course, in that first year, before I was diagnosed, I didn't know about post-exertional malaise or exercise intolerance, so I had no idea why I would feel fine one day and horrible the next. Back in those days, my crashes were severe, leaving me useless on the couch and often lasting for weeks. With treatment (correcting sleep dysfunction, beta blockers for OI, low-dose naltrexone, and Imunovir mainly), I have many more good days now, my crashes are mild and only last a day or two, and I am able to do much, much more than before.

All that is good, but the more I can do, the more I push past those limits and try to do more! I guess it is human nature (and certainly it is my nature!). I guess it's just never enough! I suppose even perfectly healthy people try to do more than they should. But I know it's been bad lately, and I need to refocus on staying within my energy envelope, as they say.

I think that is one of the toughest things about living with CFS: having to constantly, always be aware of your symptoms, your limits, your activity level, etc. It's mentally tiring to keep tabs on it all. In fact, in the first years of my illness, my mother worried constantly that I was "too focused on my illness." She thought I'd feel better if I could just get my mind off it. I suppose she probably still thinks that to some extent, even though she understands CFS so much better now. A normal, healthy person really can't understand what it's like to have to be so ever-vigilant.

Ah, well. Lots of musings and not many solutions in this post, huh? Do you have any tips on staying within your limits? I could sure use some!

Movie Monday 7/22

I have missed several Movie Mondays in a row, so I will do a quickie catch-up today. We saw a few movies as a family recently, including one in the theater! And this weekend, I have been alone (ALONE!!) and indulging in movies my family would hate.

We watched a couple of 80's classics on DVD with the kids:

Mr. Mom, starring Michael Keaton as the overwhelmed husband who tries to take care of the house and kids while his wife works (my husband hates these movies, TV shows, and ads that shows Dads as totally inept!). Craig enjoyed the humor in it.

The boys and I watched Risky Business, Tom Cruise's first big hit, where he plays a high school student who starts a prostitution business in his parents house when they go away for the weekend. Best line ever from an 80's movie: "I have a Trig final tomorrow, and I'm being chased by Guido the pimp!" Both boys, ages 15 and 18, enjoyed it very much, as I knew they would.

Jamie was away with friends one weekend, so Ken and I and Craig actually went OUT TO THE MOVIE THEATER! This is a big event for us. We normally get out once a year, when the new Harry Potter movie comes out (how can they be over?), but this was our second time in the theater in the past few months. We saw Now You See Me, and we all loved it! It features an all-star cast (Mark Ruffalo, Morgan Freeman, Woody Harrelson, and more). Four magicians/illusionists receive a mysterious summons; the result is a magic show that captures the attention of the entire world. Their first show in Vegas results in a massive bank robbery in Paris. The FBI is put on the case but are always two steps behind them. It's an original story that keeps you guessing right up to the very last moments and was perfect to see on the big screen, with all the cool illusions.

The next night, the three of us rented a DVD, The Dark Knight Rises, the latest Batman movie. Craig had already seen it with friends but wanted to share it with us because he said it was the best of all the Batman movies! It was very good - classic action/superhero movie with a fast pace, nonstop action, and plenty of twists and turns.

I got back home from dropping off the kids on Saturday afternoon and was totally wiped out. I have been indulging in girly movies each evening since then! Saturday night I watched Now is Good, starring Dakota Fanning as a 17-year old girl named Tessa who is dying of leukemia. She has a bucket list of things she wants to do before she dies, and her best friend is helping her, much to her father's frustration since some of the things on her list are dangerous and/or illegal. Then Tessa meets the hunky boy next door, and her life takes a dramatic turn. My husband hates sad movies, and I bawled my eyes out over this one! It was very good, Fanning was excellent in the role, and a good cry over fictional troubles is always so cathartic!

After crying so hard, I decided I needed something light and fun next, so I watched Party Girl, a 1995 film starring Parker Posey that was nominated for an award at the Sundance Festival. Mary, played by Posey, is the party girl of the title, living a carefree and drunken life, barely scraping together enough money for rent and her designer clothes habit by throwing wild parties and charging for admission and drinks. She gets arrested for one of these illegal parties, and her godmother bails her out and gets her a job as a library clerk. Though it is somewhat light and fun, the movie actually has some heartfelt emotion to it. It was the perfect antidote after crying over Now is Good!

And, continuing the tear-jerker festival, last night I watched The Boy in the Striped Pajamas, a movie adaptation of a wonderful book I recently listened to on audio (my review) about a young German boy whose father is a high-ranking Nazi official during World War II. His family moves to Auschwitz, and the boy - desperate for a friend to play with - befriends a boy his age on the other side of the fence. Their friendship grows, though as anyone familiar with the Holocaust knows, there can't be a happy ending. So, another crying bout last night, but it is an excellent movie. It was also great on audio.

Have you seen any good movies lately?

Up and Down and All Around

Whew, I feel like I've been through the spin cycle a few times. Sorry I haven't posted here in a while. This summer generally has just been so busy and exhausting for me - this past week in particular. Thanks to those of you who checked in on me - I was touched by your thoughtfulness. So, the highs and lows...let's start with the highs...

My husband and sons skipping stones along Lake Ontario at sunset.

We spent four days traveling and camping our way to the far northern reaches of New York state for my college reunion. As you know, I was worried about managing the trip and the reunion and thinking I might feel left out among the healthy friends of my youth. I shouldn't have worried. I had an AMAZING time! We mainly went for the reunion at my old sorority house. It was the 25th reunion for the year behind me, and they organized a massive group of friends from several surrounding years (from '87 to '90). There were probably 30-40 of us from those years who showed up, plus a smattering of alumni from recent times and from the 70's and 60's.

It was soooo much fun! Though I hadn't seen most of them in 26 years (other than letters at first and Facebook more recently), it felt as though no time had passed at all! We were all so happy to see each other. We reminisced and told stories and laughed and laughed and laughed. My face hurt from smiling and laughing so much!

I didn't feel left out at all. Most of them know about my illness from Facebook (I don't talk about it much among my friends and family on Facebook, but I do occasionally mention it, like on Awareness Day), so I didn't feel like I had to explain anything. There were lots of chairs on the porch, so I wasn't the only one sitting. And when I got tired of standing after a group photo, I just plopped down on the stairs - a couple of my friends joined me and the others moved down to the bottom so we could still talk face to face (I really hate being the only one sitting at a party and staring at people's bellies all night). Although most people were drinking beer or wine, I wasn't the only one drinking water, and - unlike when we were students - drinking was not the center of attention!

The only thing I missed out on was going out downtown (it's a small town) and dancing until 2 am Friday night! The women from our classes went out en masse, took over some of our old bars, and partied like it was 1986! They even went out to The Bagelry (an amazing place!) at 2 am for after-hours pizza bagels, just like the old days. So, I missed all that, BUT...I did manage several hours of socializing with everyone on the porch at the house both Friday and Saturday evenings, which was an amazing feat for me. I think all the laughter counteracted the exertion!

A big shout-out to my incredible family because I never could have managed this without them. We enjoyed camping, and it gave us a nice respite from the crowds of laughing, shouting women! My husband and my two sons were great sports, hanging out while I caught up with my friends (there was one other husband and one other teen for them to hang out with!). Everyone kept saying how incredible it was that two teen boys were so patient and thoughtful. I'm lucky to have all three of them!

Oh, yeah - the bad stuff. I don't want to dwell on that now that I am smiling thinking about the weekend. It's just been an exhausting and stressful week for me. My husband has been out of town, and the boys and I have had just 3 days to unpack from the last trip, clean up the house, and get ready for another trip. My son got an ear infection over the weekend, so we ended up making two trips to the doctor's office, 3 trips to the pharmacy, plus all the other errands, etc. Then my husband had a medical scare last night, 2000 miles from home (everything seems to be OK for now). Whew - just feeling totally wrung out right now.

Back to the positive side...one more big, exhausting day for me tomorrow, packing up and driving the kids to their grandparents' house, with a stop on the way at our Lyme doctor's...and then...I get 2 days all to myself (by myself!!) and another 4 days alone with my husband. I have big plans - to rest and recuperate!

Here's a photo from the weekend - that's me in the front, holding the Phi, with a big smile on my face!

Just. So. Exhausted.

I had good intentions this week to write a couple of in-depth blog posts, but I am still struggling - every day - just to get through the day and do all the necessary stuff for daily life.

My youngest son is off his crutches now, in PT, and feeling great. I no longer have to wait on him, fetching food, ice packs, video games, etc...BUT now that he's back on his feet, he wants to make up for lost time with his friends. I spent much of the week ferrying him around town - picking up his friends, taking them to the pool, and the driving range, plus he and I had a bunch of appointments. Lots of driving time this week. We had a houseful of teens here on the 4th of July, so I spent much of the day cooking!

So, I woke up this morning feeling totally exhausted. I really, really wanted to take a walk before it got too hot this morning, but there is no way I could manage that today. I am resigned to yet another day of feeling exhausted. Sore throat and aches are creeping in, too.

I think my other problem is that with the long days, I am waking too early. I always wake as soon as it starts to get light out, despite room-darkening shades and an eye mask. I can usually manage to stay in bed, dozing lightly, until about 8 am, but that is it. So, I suppose I need to get to bed earlier, but I already head upstairs at 9:30 pm! And I really enjoy my little bit of reading time before lights out.

Didn't mean to write a whiny post - just trying to explain why I haven't been writing much lately. Soooo worn out...

Disappointed, Again

I had a great plan for today. First, this week is supposed to be my Anti-Procrastination/Catch-up Week - I decided on Sunday to set aside this week to get all the things done that I have been postponing for too long - the phone calls, e-mails, etc. that have been on my to-do list for far too long. And today, I was going to jump into that project. I went to bed last night feeling relatively good (for night-time) and motivated to hit that list today. I've also rededicated myself to trying to lose a couple of pounds and slim down a bit - my sweet tooth has been taking over lately! It's becoming super-hot and humid here in Delaware now, so my plan was to take an early morning walk (i.e. 9 am) before it gets too hot. So, I got up this morning, got dressed in cool, wicking shorts and shirt, ready for my walk.

So what happened?

I have a killer sore throat and a sore mouth, too. I suspect I've got another case of thrush, which crops up periodically ever since my 3-year long Lyme treatment. It's not bad enough yet to look really bad, but these are my early warning symptoms. Of course, the sore throat could "just" be a typical CFS crash, but my tongue hurts, too. So, I am taking it easy and saving what meager energy I have (I do still have to make breakfast for my son and his two sleep-over friends, run to the farm to pick up our weekly veggies today, and make dinner  tonight). I am also taking lots of oregano and olive leaf (both potent anti-fungals) plus extra probiotic.

I should be used to this kind of last-minute change now, used to the disappointment of not being able to do what I want to do. In fact, I even came up with a name for days like this - it's a Plan B day. But, after 11 years, it is still disappointing to have to give up my plans. Despite how bad I am feeling (the aches are creeping in now, too), I am still yearning to take that walk in the sunshine and tackle that to-do list. sigh....

I know, I know. I'm resting.

May 2013 CFSAC Meeting Videos Posted

CFSAC has posted videos from its most recent meeting, held on May 22 - 23, 2013. Here are all the links (copied from an e-mail, so I don't know what the formatting will look like):

CFSAC Spring 2013 Meeting
(I always find the Public Comment periods interesting, and this meeting also included - for the first time - public Q&A sessions)

Welcome & Call to Order - Day 1,  May 22, 2013, 9:00 - 10:30 AM

Public Comment on Day 1, 10:45 AM - 1:00 PM.

Approve Prioritized Recommendations List - Day 1, 1:00 - 1:30 PM.

Determination of Medicare Coverage of Test and Treatments - Day 1, 1:30 - 2:30 PM.

Public Question & Answer on Day 1, 2:45 - 3:15 PM.

Committee Discussion and Plans for Day 2, 3:15 -- 5 PM.

Opening Remarks on Day 2, 9:00 - 10:15 AM.

Health Insurance Marketplace - Day 2, 10:15 - 11:00 AM

Public Comment on Day 2, 11:15 AM - 12:15 PM

Public Question and Answer on Day 2, 1:30 - 3:00 PM.

Committee Discussion on Day 2, 3:00 - 3:30 PM.

Committee Discussion (Part #2) on Day 2, 3:30 - 5:00 PM

Mixed Feeling About Reunions

I've been on an emotional rollercoaster lately. The silly reason? A bunch of my old friends are all going to our college reunion this summer. One friend started a Facebook event to see who was planning to attend, and I watched the enthusiastic replies pile up with envy. Literally dozens of the women who were in my sorority are all planning to go back to campus in July for this summer's reunion. The two colleges in town hold a reunion every summer, but this is the 25th for the girls who were one year behind me, including many of my close friends.

Right from the start, I felt like there was no way I could go to the reunion. For starters, I went to college in the middle of nowhere in the very northern reaches of New York state, north of the Adirondacks and not too far from the Canadian border. So, even if (hypothetically) I could afford a plane ticket, the nearest airport is still a 3 hour drive away from our college town. The logistics tortured me: I could fly into Syracuse, rent a car...no then I'd be too worn out by the time I got there. OK, I could get a ride with a friend from Syracuse...no, then I wouldn't have my own car so I could go rest whenever I need to. And even if I could figure out how to get there, how on earth would I manage the many hours on my feet, as all my friends  - there for a wild girls' weekend - walked into town and stayed out until 2 am? I considered and discarded various options and finally just gave up.

But as I watched the excitement build among my friends, I felt so left out. How do I explain to all of them why I can't make it? Just telling someone you have a chronic illness doesn't cut it - how can anyone possibly understand all the restrictions we live with every day? Many of them are staying in a group of townhouses they rented together.

Then I started chatting with a friend of mine from the sorority who graduated the same year as me. We've become even closer recently, since finding each other on Facebook. She said she was bringing her daughter with her to alumni weekend and that she can not drink alcohol because of medical problems either. She got me thinking - here's someone who's going to go back but isn't going to do the wild weekend thing....

I finally came up with a workable plan and made reservations! Our whole family is going up there, with our camper, making it into a mini vacation (which we desperately need anyway). I reserved a spot at a campground 25 minutes from town (in the lovely Adirondack foothills). My husband will do all the driving, I'll have my comfy camper to rest in when I need to, and I can make a trip or two into town to see my friends for a limited, manageable amount of time.

I'm so excited to finally be going, but a part of me is still worried about what it will be like to stick out like a sore thumb. The thing is that I was a bit of a party animal in college! I had crazy energy back then - got a chemical engineering degree, was president of my sorority, and spent my weekends going wild with my friends. I drank way too much back then, danced for hours, sang/screamed until I was hoarse, and stayed up all night.

Almost all of them - except that one friend - are going to alumni weekend on their own, without families, for a "girls' weekend." I know they'll be ready for a wild weekend of drinking, dancing, singing, and having fun. I used to be the life of the party, ready for anything. This time, I'll only be able to manage a couple of hours at a time, no alcohol, no dairy (the wine and cheese party Friday should be fun!), no staying up late. Going downtown to our old hang-outs is definitely out - I'll be lucky if I make it until 9 pm!

My 30th high school reunion is also this summer, and I am almost relieved that I definitely can't go to that one! We will be away on vacation at that time. I did go to my 20th...just months after finally getting a diagnosis for my mystery illness. That was definitely strange. I wasn't even comfortable with having a chronic illness yet myself, so explaining it to people I hadn't seen in 20 years was just plain weird. It's hard to know what to say when someone gives you a big hug and says, "You look great! What have you been up to?" Uh...lying on the couch and getting blood tests?

Ten years later, at least I am more comfortable - and more happy and settled - in my life with chronic illness, so that helps. The other thing that helps is social networking. Many of the old friends I will see at my college reunion already know I have CFS because we've been in touch on Facebook. Of course, they don't understand the extent of it or how restricted my life is. In fact, I wished an old college friend a happy birthday yesterday, and she replied how much she enjoys my Facebook posts and how busy I am! Um, yeah. How do you respond to that?

So, I just have a lot of mixed feelings. I am very excited to see everyone again and to show my kids around my old college campus and the town. That one friend and I both feel better knowing the other will be there, so neither of us will be the only one not partying - she told me, "It will be wonderful to have a fellow-mellow-sober alumni to share the experience with!" Love that. So, I am mostly excited, but I know it will be tough to tiredly head back to our camper when all of my friends are just getting started for the night. I'm also not looking forward to the explanations. There's a fine line between helping an old friend understand and not making others feel uncomfortable or pitying.

But I am going! That alone feels like a triumph.

Well, I feel better just talking it out - thanks for listening!

(P.S. Just to save you the trouble, I generally only "friend" people on Facebook that I know in person, close friends and family - otherwise, it just becomes too much for me to keep track of. But I'd love to get to know all of you here on the blog, so feel free to leave a comment!)

Movie Monday

Well, we made it through the first week of Craig's post-op recovery. As I mentioned in my last post, he is doing great - much better than expected - and avoided a CFS crash completely. A miracle!

He is still mostly immobile, though he can get around the house a bit on crutches. So, we have been watching a lot of TV, but not as much as after his last two surgeries. Since he's feeling so much better, he's been mostly playing video games with his brother and some friends who've visited.

So, we watched just one movie last week, a classic 80's comedy, Animal House. Believe it or not, I was a teenager in the early 80's and had never seen it! It was, of course, exactly as expected - goofy, sometimes raunchy, comedy. Lots of fun watching John Belushi's antics and laughing at the craziness of the Delta house. Funny thing is that there was a fraternity on my college campus EXACTLY like the fraternity in Animal House. They used to throw furniture and TVs out of the third floor windows for fun (and that was one of the milder things they did). So that was a fun distraction.

Mid-week, a DVD we'd requested from the library finally came in, the fourth season of In Plain Sight. Since there's only one copy of each season in our entire state library system, and there is usually a waiting list, we are trying to watch the entire season in one week! Fortunately, the kids like this great series about the Witness Protection Program as much as my husband and I do, so we've been flying through the episodes. The show has interesting cases each episode but also a great sense of humor. We've set everything else aside for the time being, though my husband is very eager to start watching one of his Father's Day gifts, season one of The Game of Thrones!

Oh, and Ken and I did have one hour to ourselves when the boys had friends over this weekend, so we watched the pilot of Graceland, a new TV show about a house in southern California filled with undercover government agents from FBI, DEA, and Customs - seems like a great show so far!

Have you seen any good movies or TV shows lately?

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

Post-Op Recovery

Well, I think I am finally recovered from my son's surgery - ha ha. I know that sounds strange (maybe not to you guys), but the two-day ordeal at the hospital took a lot out of me. This week has been a lost cause - I've been wiped out and using all my limited energy to take care of him during the day. I felt good on Wednesday and thought I'd finally gotten past it, but then I woke up Thursday feeling awful - very achy and sore throat. I had used my newfound energy on Wednesday to go to the grocery store AND to my library's monthly noon book discussion (I know, I know - I am living a wild life here!) Guess that was too much for me. So, once we got back from the doctor's office yesterday, I rested the rest of the day. I've been taking long naps in the afternoon. Hopefully, I'm past the worst of it now.

As for my son, he is doing great, and we are amazed - and grateful! The difference between this knee surgery and his first two is like night and day, and the odd thing is that this was the more extensive one. The surgeon actually had to make a full incision; the first two surgeries were just arthroscopic. The first surgeries caused a severe CFS crash each time, lasting 3-4 weeks. His CFS is usually mild and completely controlled by Florinef, so we were surprised when he was so totally wiped out for a month afterward.

So, why is this time different? I think I've figured it out.

All three times, we printed this great article on surgery and CFS and handed it out to the surgeon and anesthesiologist, and all the doctors were very accommodating each time. They were familiar with various types of Orthostatic Intolerance (OI), they chose anesthesia that was better for someone with OI, and they made sure to give him a saline IV.

This time, however, his surgery was delayed for 6 hours and he ended up having to spend the night in the hospital. This inconvenience turned out to be the best thing that could happen! They kept him on a saline IV all night long, and I'm pretty certain that is what made the difference! Our older son used to get weekly saline IV's to treat OI, so we know what a dramatic effect they can have on someone with OI. The anesthesiologist also explained to me this time that ALL types of anesthesia have some vaso-dilating properties (very bad for someone with OI as dilating the blood vessels makes it even harder for us to circulate enough blood to brain and heart), so they chose the least vaso-dilating but couldn't avoid it altogether. I suspect that the extra saline IVs not only helped to increase his blood volume but also helped to counteract the vaso-dilating effects of the anesthesia.

So, after the first two surgeries, he was totally wiped out for a full month - just lay on the couch, watched TV, and didn't have the energy to get up even when his knee pain began to subside (you know, the basic CFS crash). This time, by the second day post-op, he was sitting up, talking animatedly, and playing video games. He even had a friend over just a few days post-op to play games with him! Even better, because he isn't crashed, his pain is much better, despite the fact that it was more extensive surgery and should be hurting more than before. He's already started to reduce the dose on his pain killers; after the first two surgeries, he stayed on the maximum dose for two full weeks.

All of this is just amazing to us...and wonderful! Lessons learned: not only to share important information with the doctors ahead of time, but request extra saline IV's (at least 2 liters) - the lost sleep due to the overnight in the hospital was more than made up for by the extra saline. Now I just need to recover - maybe next time we'll ask for a saline IV for the patient's mom, too!

Movie Monday 6/10

Whew - a long and difficult week here - school ended on Thursday for our 15-year old son, and he had knee surgery on Friday. I knew it would be a long day for all of us, but it turned out even longer than we'd anticipated - a real marathon for someone with ME/CFS! He was scheduled for surgery at 11 am, so we got to the hospital at 9 am, as directed. There was some kind of emergency involving our surgeon, and he never got to our son until 5 in the evening! By then, he'd been without food or water for almost 24 hours, and we were all exhausted. He ended up spending the night, and we had another long day at the hospital on Saturday, trying to get him discharged.

So, not much time for movies last week, but my husband and I watched a DVD Thursday night while our sons were out with friends:

We watched The Oranges, starring Hugh Laurie (of House fame), one of our favorite actors. This is a somewhat quirky movie, about two families in East Orange, NJ, who have lived across the street from each other for decades and are close friends. Close that is, until the husband in one family (Laurie) has an affair with the 24-year old daughter from the other, which sends all of them into chaos. There are lots of funny moments in the movie, but it is also sincere and heartfelt, delving into issues of family, friendships, and happiness. It's fun, lively, and entertaining with a talented cast.

Have you seen any good movies lately?

Movie Monday 6/3

Another week gone by without much blog posting - so sorry for that! Things were crazy busy here last week. My oldest son came home from college (victorious after a great freshman year!), and our house was filled with college students and friends old and new all week. It's been a lot of fun....but also lots of cooking for me! Today, he started his one class for summer session (commuting to school every day for 2-3 hours of Calculus), my younger son has a hectic week of final exams, and I have my last few hours of quiet solitude until September! Friday, my younger son has his third (and hopefully, last) knee surgery. So, another busy week.

We did have time for one movie last week:

Saturday night, my sons had friends over for a movie night in the basement, so Ken and I watched Promised Land, a fairly new release starring (and written by) Matt Damon and John Krasinksi (of The Office fame) about a current hot topic, natural gas and fracking. Damon plays Steve, a guy who works for a giant natural gas corporation. His job, along with his partner, played by Frances McDormand, is to travel to small towns where there are natural gas deposits and convince all the land owners to lease portions of their land to the company so they can drill there. They travel to a rural Pennsylvania town and find they have some opposition: a high school science teacher, played by Hal Holbrook, who speaks out against the risks of fracking, and an environmentalist, played by Krasinksi, who tells the townspeople how his own family farm was ruined by polluted water caused by fracking. From this, it sounds like simple good vs. evil, with Steve respresenting the evil, greedy corporation, but he actually loves his job and believes he is helping these small farming communities to survive by bringing them some much-needed income; he saw his own farm town in Iowa die out after a local factory closed. And, there is a pretty love interest, of course, played by Rosemarie DeWitt whom both Damon's character and Krasinsksi's character are interested in. As you might imagine from this description, it is somewhat political, as this is such a hot topic right now, though the film remains fairly neutral and tries to present both sides. It was an interesting movie, with a fabulous cast that was fun to watch. Not a great movie, but good entertainment for a Saturday night.

We've also been catching up on TV shows with Jamie since he got home - he and I watched the end of the season of White Collar, he watched the finales of The Office and Grim (season finale), and the whole family has been catching up on missed episodes of Revolution.

Have you seen any good movies or TV shows lately?

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

Movie Monday 5/27

Happy Memorial Day to everyone in the U.S.! I've been thinking a lot today about my grandfather, my uncle, and my great-uncles, who all served in the military at various times and are no longer with us. They are all missed.

We had a very low-key, relaxing holiday weekend. Just what we needed! Our younger son traveled to Connecticut to help his grandparents get their sailboat ready for the season, and our older son came home from college last week, so it was odd having the older one here but not the younger one. Our  college son, Jamie, was off with friends for much of the weekend (he is still feeling great!), but he also spent some down time watching movies with us and catching up on TV shows:

Friday night, while my husband was out golfing, Jamie and I ordered pizza and found an interesting-sounding movie available for free on amazon, Surveillance. We were both a little disappointed in it, but it was OK. It's about two FBI agents who come to a small town to help the local police track down some brutal serial killers. There were three survivors from the killers' latest massacre: a little girl, a woman who's a drug addict, and a police officer. The movie follows each of their interviews, but their stories just don't add up. There are some surprises here (though Jamie said he figured it out half-way through!), and it's a unique story. It's just not an excellent movie - decent but not excellent.

Saturday night, we watched a much better movie, District 9, a unique sci fi story. A giant alien spaceship came to Earth 20 years earlier, hovering over Johannesburg, South Africa. Humans broke into the spaceship, captured all the aliens (who look kind of like giant insects and are nicknamed Prawns by the locals), and segregated them into one area of the city, known as District 9. The area soon became a slum, but violence and problems between the local humans and the Prawns have accelerated. When the movie opens, the humans have decided to relocate the aliens into a desolate area outside of the city, and members of a huge corporation that has been put in charge of the aliens are going into District 9 to evict all the Prawns. This was a fantastic movie, far better than I expected. I thought it would be all action and violence - and there is certainly some of that - but the heart of the story is the humans' mistreatment of the alien species and what happens to one particular alien and one particular human. All three of us loved it - interestingly, you find yourself rooting for the aliens!

We also tried a new TV show this weekend, Defiance. It's another sci fi story, this one set 30 years into the future after aliens have invaded earth, in a town called Defiance where humans and various alien species live side by side peacefully. We've watched the first two episodes and are hooked already!

Have you seen any good movies or TV shows lately?

Watch CFSAC Live Today

Better late than never....crazy week here.

Yesterday and today is the Spring 2013 meeting of the CFS Advisory Committee to the Department of Health and Human Services in the U.S. You can watch the meeting live here. And here is the meeting agenda so you can decide which parts you'd like to see. There is a public comment period scheduled for 11:15 am EST today and a public Q&A period (new feature!) at 2:45 pm. The main talks today are on Health Insurance at 10:15 am and (my personal favorite) How To Get More Clinicians Involved in ME/CFS? by Dr. Susan Levine at 1:30 pm.

So, tune in at least for a part of the meeting, if you can. The public comment and Q&A periods yesterday were very interesting.

We're on the road today, going to see my son's Lyme doctor in NJ, so I'll miss most of today's webcast, but CFSAC will post videos of each portion of the meeting afterward.

Movie Monday 5/20

Busy, stressful week last week for me, but it improved toward the end. I went out with four of my closest friends for dinner Thursday and came home feeling relaxed and happy - nothing like some girl talk to make you forget all your problems!

We saw a couple of good movies this weekend:

Friday night Craig had a friend sleep over, so Ken and I watched Silver Linings Playbook (yes, finally!). It's a funny, frantic, big-hearted drama about mental illness. Bradley Cooper plays a guy recently diagnosed as bipolar who has just been released from a court-ordered stay in a mental hospital after severely beating his wife's lover. Cooper does a fabulous job playing the often-manic Pat who has moved in with his parents in Philadelphia (his dad is played by Robert DeNiro) to try to recover and put his life back together. He is still in love with his wife but unable to see her because his restraining order is still in effect. He meets his best friend's sister-in-law, Tiffany, played also fabulously by Jennifer Lawrence. Tiffany has her own problems - she is trying to recover from severe depression (and compulsive sex) after the death of her husband. Pat and Tiffany become friends and enter into an agreement to help each other: Tiffany will help Pat contact his wife, and Pat agrees to help Tiffany with an upcoming dance competition she wants to enter.  Although there are plenty of funny moments in the movie, the lead characters' mental illnesses are dealt with realistically and sensitively. The movie's setting in Philly is also done perfectly (we live just south of Philly) - they really captured the local color and Eagles' fanaticism!  Great casting, great acting, great dialogue - it's just an excellent, satisfying movie from start to finish.

Sunday night, Craig and Ken and I took a totally differently tack and watched a comedy, Guilt Trip, starring Seth Rogen as Andy, a chemist, and Barbra Streisand as his mother, Joyce. Ken and I aren't huge fans of Rogen, but the movie was pretty good. Joyce is an overly attentive mother who has been widowed for many years and has given up on love. Andy asks his mother to join him on a cross-country road trip as he tries to launch his own business, though he has an ulterior motive in asking her along. Although the smothering Jewish mother jokes got a little old for me at one point, the movie is more than just an on-going series of gags (thankfully) - it actually has some heart in it and some underlying emotional depth as the mother-son relationship evolves. It's not Oscar material, but it was a pleasant 90 minutes.

Have you seen any good movies lately?

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

Post-Mother's Day Crashette

This is my new favorite word: crashette. A friend and I were e-mailing about lunch plans for tomorrow, and I warned her I wasn't feeling well today so would have to see how I'm doing tomorrow (she is very used to my not being able to plan ahead and is very patient!). She replied that she hoped this was just a "crashette" and not a full-blown crash. Isn't that great? Love it. And, yes, this is an amazing friend who is very understanding and kind.

So, I apparently did too much this weekend, but I am hoping the crash doesn't last too long. For Mother's Day, we visited my mom in Connecticut, along with my sister and her family. On Sunday, my mom and her husband had planned a big scavenger hunt at a local beach park for all 10 of us. In past years, I haven't been able to walk around for this type of thing, but - thanks to beta blockers and my heart rate monitor - I managed pretty well this year. I was teamed up with my mom's husband, my sister, and my fabulous 11-year old niece, and we had a lot of fun. I have been working on increasing my stamina and can now handle up to a 40-minute walk on a good day (staying within my heart rate limitations) without crashing the next day. But, by the time we got back in the cars, my heart rate monitor showed we'd been walking around for 1 hour and 30 minutes! Definitely beyond my limits.

As is often the case, I was OK yesterday, but the effects hit me last night, and I woke up today feeling crummy. I have learned, though, after 11 years, to give in and take care of myself when I crash now. I am not a quick learner, but I am finally trained in this respect!  So, today was a Plan B day, and I not only rested physically but gave in to a restful mindset right from the start of my day. I am hoping to feel well enough tomorrow to manage that lunch with my two close friends (and a meeting in the morning with my lawyer to close out my disability case with him).

I am not the only one still trying to recover from the weekend. In addition to the scavenger hunt, my sons were both up until 11 pm both Friday and Saturday night and were exhausted by the time we got home on Sunday evening. Amazingly, my 18-year old is doing fine now and hasn't missed any classes in college, but my 15-year old is still wiped out and also suffering from exacerbated allergy symptoms. he made it to school yesterday and today but took a nap as soon as he got home (he's in bed now).

So, we are resting and waiting and hoping these are just crashettes for us both. It was worth it to spend time with my family and especially with my niece and nephew!

My family after our scavenger hunt on Mother's Day

International ME/CFS Awareness Day 2013

I realize I am a day late, but I was away all weekend visiting my mom for Mother's Day and her birthday (I hate how Awareness Day always falls near Mother's Day weekend!). I figure we can use all the awareness we can get 365 days a year, so better late than never...

For starters, here is what I am posting on my Facebook wall for my friends and family (to keep it manageable, I only friend my family and in-person friends on Facebook), along with a link to this post:

"Yesterday, May 12, was International ME/CFS Awareness Day. ME stands for Myalgic Encephalomyelitis, the name by which this devastating illness has been historically known throughout the world, and CFS stands for Chronic Fatigue Syndrome, the silly-sounding misnomer the CDC saddled us with in the 1980's. I have had ME/CFS since March 2, 2002, and both of my sons have had it since 2004. Scientists have confirmed that this disabling illness has both genetic and infectious components, though they have not yet pinpointed the cause(s) or cure. At its heart, ME/CFS is an immune system disorder, causing parts of the immune system to over-react and parts of it to under-react. In a devastating cascade of effects, it causes problems with the immune, endocrine, and nervous systems. The mitochondria (i.e. energy producers) in our cells don't work properly and don't process oxygen normally so that even mild exertion - like a short walk or going up the stairs - can result in suddenly feeling as if we have the flu, and those effects can last days or even weeks. Jamie, Craig, and I have all improved somewhat with various treatments (mostly lots of medications), but not everyone is so lucky. Many people with ME/CFS are housebound or even bedridden. For more information and to learn how to help, check out this blog post." (with a link to here)

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask you), here are some other ways to help further ME/CFS education and research:

• Learn more about ME/CFS. Here are some sources of information you can share with others:

1. About CFIDS by the CFIDS Association
2. An Overview of Chronic Fatigue Syndrome by Phoenix Rising
3. The CDC's information on CFS
4. My own article, CFS: An Invisible Illness, published last fall on Lively Woman
5. Our public testimony on pediatric CFS at last year's CFSAC meeting.

• You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know the economy has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities:
• CFIDS Association of America/Research 1st
• Open Medicine Institute (click in the upper right corner to donate)
• ME/CFS Australia
• Simmaron Research
• ME Research UK
• You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
• iGive
• Good Shop
• You can even earn money for CFS research when you use a search engine:
• Good Search
• iSearchiGive

Happy (belated) Awareness Day!  Help to spread the word!

(feel free to link to this page or share its information)

The Thrill of Victory and the Agony of Defeat

Even after 11 years of living with ME/CFS, the emotional highs and lows that go along with the unpredictable physical symptoms still take me by surprise. I know intellectually that it's all about chemistry - cellular metabolism, hormones messed up, neurochemicals in the brain present or absent - but it still feels like some kind of voodoo when these ups and downs hit me.

This week has been a typical rollercoaster in that respect. I'm going without Imunovir for the 3rd week in a row (it's been back-ordered - more on that next week), so I expected to feel awful, but I've actually been doing pretty well - just when you think you can predict this crazy illness, it proves you wrong, just to keep you on your toes! Monday night, I was looking forward to the next day - nothing special going on, but I was feeling good and just looking forward to another good day.

I woke on Tuesday feeling a bit tired but thinking I'd be OK. I had to drive my husband to the eye doctor for a retinal check (all good!), and while I waited in the waiting room, I felt worse and worse. By the time we left there, I was achy all over, exhausted, even getting a mild sore throat - you know, typical CFS crash. But we had some errands to run, and we had been looking forward to having lunch together, so I kept going. An hour later, I was hitting bottom, not just physically but emotionally, too. I was feeling like I just couldn't take another moment of being in the car, and even after I got home and into bed, I felt horribly depressed, thinking to myself that I couldn't possibly tolerate a whole lifetime of this torture. Now, that is a pretty normal feeling for many people with ME/CFS, but as I said, I've actually been quite well lately. I couldn't believe that one bad day could put me in such a dark state of despair.

The next day, Wednesday, I woke up feeling good again. I was able to go through with my plans to go shopping for Mother's Day and my mom's birthday (both this weekend) and took advantage of the rare shopping excursion to get a few things for myself, too. I had another good day today, picking up the house for our cleaning service, dancing to the radio, sending my gifts from the Post Office, and even doing a little weeding in our flower bed (yes, all in one day!).

During these last two good days, I have been feeling euphoric, absolutely filled with joy and grateful for every small thing in my life. Like I said, I know it's all brain and cellular chemistry, but it still feels so miraculous...and bizarre. If I didn't know better, I would fear that such drastic mood swings meant I was losing my mind! But no, it's just another "normal" week in the crazy life of someone with ME/CFS, riding the rollercoaster of chronic illness. Wheeeee!

Videos from FDA ME/CFS Workshop Posted

The FDA was very quick to post videos from their recent workshop on Development of Safe and Effective Drug Therapies for CFS and ME (I was a little slow, but they were quick).

If you go to this website, you will see a list of archived videos. They conveniently broke the meeting down into manageable pieces, so you can just watch the parts that are of interest to you or watch them all, one at a time, when you're able to.

I saw some of these live (but not all of them). I highly recommend any of the patient panels - it was so exciting to watch all these people from the FDA listen to what regular ME/CFS patients and clinicians had to say! One of my favorites was Patient Panel #2.

This meeting was ground-breaking! Hope you enjoy peeking in and seeing for yourself.

Movie Monday 5/6

Ahhh...a quiet and peaceful Monday. I needed that. My 15-year old son, Craig, was home sick all last week with a sinus infection that made his CFS flare-up, so it was a treat today to be home alone, without the TV constantly blaring. And, of course, I was glad he is feeling better!

Despite all the sick days last week, we didn't watch a lot of movies. I've almost given up on convincing my son to watch movies when he is sick. He's got a short span of attention and prefers TV shows - even if he's seen them a half dozen times before! So we watched lots of episodes of his favorite TV shows, including Community, The Office, The Big Bang Theory, and The Middle. Yes, he likes comedies!

We had a very busy Saturday. My mom and her husband were visiting from Connecticut, I had a book signing in the morning, then Craig had a soccer game in the afternoon. By 5 pm, he and I were both exhausted, so we came home with my husband, ordered pizza, and watched a movie we've all been wanting to see:

The Hobbit. Our oldest son saw it at a midnight showing the night it was released (now you know he is doing better!), but the rest of us missed it in the theater - I bet it was spectacular on the big screen. My son and husband especially enjoyed it, as they are both huge fans of Lord of the Rings (my son loves the movies, and my husband loves the books!). It is an epic fantasy, much like the LOTR trilogy movies, with stunning scenery shot in New Zealand, all kinds of fantastical creatures come to life, and gruesome battle scenes. Although it was a bit more action and violence than I usually like in movies, I did enjoy it. When I first met my husband 25 years ago, I'd never read any Tolkien, and he introduced me to The Hobbit, which we read aloud to each other when we were dating. So, I have great memories of the story and especially enjoyed seeing the scene in the cave with Gollum come to life ("What's he got in his pocketses?").  We are all looking forward to the next two movies!

Have you seen any good movies lately?

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

Movie Tuesday 4/30

Ah, yes, running behind as usual! We had a lovely weekend camping - very relaxing - but re-entry has been tough. More on that later. For now, I thought I'd tell you about the movie we watched last week, before it's next week!

My husband was home from his business travel last week, but he had dinners for work 3 evenings! So, my 15-year old son, Craig, and I were still on our own a lot. Thursday, we did an easy evening - got take-out for dinner and rented a movie, Playing for Keeps. Craig wasn't sure about it at first, but we both ended up enjoying it. It's the story of a professional soccer player named George who has retired and is now an out-of-work soccer player. He's moved to Virginia to be close to his son and his ex-wife (played by Jessica Biel), whom he still hopes to patch things up with, but when he arrives, he finds that she is engaged to marry someone else. Somehow, George gets roped into coaching his son's soccer team, and the moms all go crazy for the handsome soccer player with the Scottish accent. With all that unwanted attention, George has trouble staying on track, but is determined to spend time with his son and win back his wife. It's basically a romantic comedy, but with a fairly unique (though not all that realistic!) plot. Craig and I both enjoyed it, with plenty of laughs, a great cast (including Dennis Quaid, Uma Thurman, and Catherine Zeta-Jones), and some good soccer scenes.

When my husband came home from his dinner, we told him about the movie, and I asked if that's what coaching our sons' soccer has been like for him - constantly fending off the predatory moms who just want his body! He said it's been just like that ;)

Have you seen any good movies lately?

Must-See Webcast!

I managed to catch a couple of hours of the FDA Workshop for ME/CFS this afternoon after my nap. Wow.

This is truly an amazing thing happening - between the patient panel and interactive discussions with the entire audience of patients and public testimony, the FDA is spending two days listening to dozens and dozens and dozens of patients and doctors talk first-hand about their experiences with ME/CFS. This meeting is going to be a game-changer!

If there is any way you can tune in for at least a portion of the meeting tomorrow, you should! Here is the agenda and here is the link to the live webcast.

I am wishing now that I had gone to the meeting myself. I was asked to be on one of the patient panels, but I have been struggling a bit lately and didn't think I could manage it. But I am definitely going to submit my comments (FDA will accept them until August 2).

Watch FDA's ME/CFS Workshop Live Webcast

The landmark FDA Workshop on Drug Development for ME/CFS starts Thursday afternoon and runs through Friday. This is a BIG DEAL for everyone with ME/CFS, all over the world. It is the first of a series of workshops the FDA has planned for illnesses/medical conditions that have been traditionally overlooked in drug development (yes, CFS is first for once!).

Although a big deal was made of pre-registering for the live webcast, it looks like you might be able to watch it even if you did not register ahead of time. The links for the live webcast are on this page, and this is also where the video archives will be posted after the meeting.

The meeting runs from 1-5 pm on Thursday, April 25, and from 8:30-5 on Friday, April 26. There will be presentations by top ME/CFS experts, as well as several panel discussions including patients. Here is the full meeting agenda. The main patient panel discussions are scheduled for:

• 1:30 pm Thursday
• 2:55 pm Thursday
• 10:25 am Friday

There are also patients involved in other aspects of the meeting.
(Note that all times are Eastern Time)

Also, it is not too late to let YOUR voice be heard! The FDA will be accepting written and/or video testimony until August 2. Just leave your comments or upload a video or Word file at this page. (See the questions below that the FDA is particularly interested in having answered by patients).

So, send in your comments and tune in as much as you can over the next two days, so we can show the FDA how much interest there is! This is a ground-breaking meeting for the ME/CFS world, and you won't want to miss it!


[FDA wants your answers to these questions:

Topic 1: Disease Symptoms and Daily Impacts That Matter Most to Patients

1. What are the most significant symptoms that you experience resulting from your condition? (Examples may include prolonged exhaustion, confusion, muscle pain, heat or cold intolerance.)
2. What are the most negative impacts on your daily life that result from your condition and its symptoms? (Examples may include difficulty with specific activities, such as sleeping through the night.)
1. How does the condition affect your daily life on the best days and worst days?
2. What changes have you had to make in your life because of your condition?

Topic 2: Patients’ Perspectives on Current Approaches To Treating CFS and ME

1. What treatments are you currently using to help treat your condition or its symptoms? (Examples may include FDA-approved medicines, over-the- counter products, and other therapies, including non-drug therapies such as activity limitations.)
1. What specific symptoms do your treatments address?
2. How has your treatment regimen changed over time and why?
2. How well does your current treatment regimen treat the most significant symptoms of your disease?
1. Have these treatments improved your daily life (for example, improving your ability to do specific activities)? Please explain.
2. How well have these treatments worked for you as your condition has changed over time?
3. What are the most significant downsides of these treatments (for example, specific side effects)?]

Movie Monday 4/22

Happy Earth Day!

Whew - long and tiring week last week! My husband was out of town all week, so I was on my own. Plus, my mom came to visit, and she and I went to one of my book groups Wednesday night - all fun, of course, but tiring.

So, I watched some movies myself last week, as well as some with my son, Craig:

For myself, I picked movies I thought my husband wouldn't be interested in. I watched Life in Flight during the week - couldn't stay up late enough to finish it, but I split it into two days (pretty pathetic for a 77-minute movie!). The story is set in NYC, about an architect/husband/father who is unhappy with his life. His wife is eager for him to climb the corporate ladder and merge his company with a big firm so she can continue to host fancy parties and go on 2-week island vacations with her friends. The architect husband feels like he will be selling out if he signs this big contract. His feelings are cemented when he meets a beautiful designer who shares his artistic leanings. It's a quiet movie - no big action or suspense - about being true to yourself, figuring out what's important in life, and making difficult choices. It's kind of sad but not depressing and with a glimmer of hope.

Friday night, I watched Main Street, another quiet, thoughtful film. This one is packed with an all-star cast, which is funny because I had never heard of it before, and it looks like it got very little press or circulation when it came out. It's about a small town in North Carolina that is slowly dying, in the way of many small American towns, with its Main Street full of shuttered businesses. Ellen Burstyn plays an old woman who grew up there and is trying to hang onto her old home, in the face of mounting bills and declining income. Colin Firth plays a Texas businessman (yes, Firth has a Texas accent in this movie - very strange) with a proposition to bring the town back to life and put its citizens back to work. He rents a warehouse from Burstyn's character, and Patricia Clarkson plays her daughter, who is wary of the stranger's motives. Other town residents fill out the cast, including Orlando Bloom (whom I didn't recognize until the credits!) as a police officer. This is another quiet movie without much action, about change and fear of change. It was a bit slow for me but enjoyable.

I let 15-year old Craig pick out a Redbox movie Friday night, and he chose Pitch Perfect - again! We both loved it just as much the second time. It is such a feel-good movie with great music and plenty of humor. I love Fat Amy!

Saturday night, with my husband back home, the three of us watched Little Miss Sunshine. Ken and I had seen it before, but it was Craig's first time. If you somehow missed this gem of a movie, you have to see it! It's about family - a very dysfunctional family that will make yours look perfectly normal! - and life, with all of its ups and downs. Dad is trying to make a living as a motivational speaker with his very own 9-step program. Grandpa lives with the family and does heroin and coke behind closed doors. The teen son admires Nietzsche and has taken a vow of silence until he meets his goal of going to the Air Force Academy. Mom is trying to hold the family together, sneaking cigarettes and serving lots of take-out fried chicken for dinner. Her brother is living with them because he tried to commit suicide. And the young daughter, Olive, played fabulously by Abigail Breslin, dreams of being a beauty queen. She's a bit overweight (probably all that fried chicken) but diligently practices her dance routine (that grandpa choreographed) in the basement. Then, the unthinkable happens - Olive qualifies for the Little Miss Sunshine pageant in California, so the family sets off on a road trip. At one point, Craig said, "Mom, you said this was funny but it's sad." And, yes, it does have its sad moments - this family has some serious problems - but it is also very, very funny, especially if you can appreciate a bit of dark humor. Just watching them push-start their old VW van after the clutch breaks cracks me up every time (see cover photo). And the closing scene when Olive does her dance routine at the pageant is hilarious! I love movies that are about real life - joys and sorrows, tears and laughs - and this one is great.

Have you seen any good movies lately?

(If you are interested in what we've been reading, check out the Monday post at my book blog).

How My Son Went From Couchbound to College

I guess that post title is a bit misleading because the honest truth is that we really don't know exactly what caused such a miraculous improvement in our son that allowed him to start college with his peers last August. Desperate for some way to help him and allow him to start college on time, after 18 months of near-total incapacitation, we tried dozens of new treatments that summer, so we aren't 100% sure which of them is really responsible for his dramatic improvement ... but we have some educated guesses.

A quick bit of background for those who are new to my blog: My son's history with both ME/CFS and Lyme disease is a long and complicated one. He first got Lyme in 3rd grade but seemed to recover fully from that and was very healthy in 4th grade. In 5th grade, he suddenly became severely ill and was diagnosed with ME/CFS (which I'd had for 2 years). He missed 60 days of school in 5th grade and only attended part-time in 6th grade, with home tutoring. Treatment with Florinef for Orthostatic Intolerance dramatically improved his condition at the end of 6th grade, and he went back to school full-time, re-joined the band, and was even able to play soccer again.

At the end of 7th grade, he got Lyme again. This time, he did not return to his normal baseline after treatment. He remained more fatigued, though treating with more doxycycline didn't seem to have any effect. Over the next 4 years, his condition worsened very gradually. He was still attending school but missed 25-35 days a year, with ever-worsening fatigue and cognitive dysfunction (and all the other typical ME/CFS symptoms). Finally, some strange symptoms alerted to the fact that he had another tick-borne infection, bartonella. A Lyme specialist diagnosed him with Lyme, bartonella, and babesia (all tick infections); our best guess is that he had these other infections all along but they were never tested for or treated back in 7th grade.

Treating tick infections that have been present for that long is a tricky business, and most people get worse (due to a herx reaction) before they get better. Our son got even worse than most after so long, with an 18-month long severe herx reaction that left him mostly incapacitated. He spent most of his junior and senior years of high school on our couch, struggling to catch up on missed work, but with the help of home tutoring (and many fierce battles with the school for accommodations), he managed to graduate on time. Although he'd had some gradual improvement, he still had a difficult summer (and only finished his high school work the day before college started!), but at the end of August, he improved dramatically.

Yeah, that was the brief version! So what changed last summer that allowed him to start college on time and even live on campus? Here are the things we tried and our best guesses as to their effectiveness:

Beta Blockers - We have no doubt that starting him on low-dose, extended-release beta blockers at the end of August played the greatest role in getting him back on his feet (quite literally). He felt an immediate improvement and is now able to walk all over campus without crashing the next day and has even joined the Ultimate Frisbee team. He still takes Florinef for OI (we tried reducing the dose and found he still needed it), but adding the beta blockers resulted in a significant improvement.

Increase Imunovir/inosine - He started inosine last spring (something I have had good success with, too), but it was last summer that I began very slowly increasing his dose. He now takes 4 pills a day - which is still lower than what is recommended - and I think inosine has helped to normalize his immune system somewhat so that he can better fight those infections. I've also noticed that virally-induced crashes have become quite rare for him (and for me) since inosine. Note that we started with prescription Imunovir (not available in the U.S.) and later switched to generic inosine, which worked the same for us (but is far cheaper), and that the dosing is quite complicated and must constantly change. It's all explained in that post on Imunovir/inosine.

New Supplements - This one is more of a guess, but we changed many of his supplements last summer, and I do think that has helped. We consulted with a biochemist/registered dietician who advised us on supplements based on his history, symptoms, genetics, and circumstances. I think that the most significant effect probably came from those supplements aimed at improving his methylation process (something I had started on my own before) to allow his body to better process both the medications he was taking for tick infections, as well as the toxins (i.e. dead bugs) released by the treatments. I think this is a very individual thing--choosing appropriate supplements based on symptoms and history--and we relied on the advice of the dietician/biochemist. In some cases, he was already taking certain supplements (like a multi-vitamin, alpha lipoic acid, and others), but the biochemist recommended a specific brand that she felt would be better absorbed and/or more effective. All of this has been very expensive, and we are not entirely sure which have helped and which are a waste of money. We've been afraid to change anything since he's been doing so well!

Eliminate/Reduce Artificial Dyes -  I really have no idea if or how much this helped. The dietician/biochemist said that artificial coloring can be toxic to many people, especially those with chronic illness. He was ingesting a lot of it because he drank 2-3 liters of Gatorade a day. The salt and fluids helped tremendously with his OI, but she was concerned that the artificial dyes were detrimental. We switched from Gatorade to Vitalyte, a more natural electrolyte drink with only natural colors (and not much of that). I have no idea if it helped or not, but the Vitalyte is actually less expensive than Gatorade anyway, and both of our boys like it. I think it has a lot less sugar in it, too. Later, when we realized that sugar was a big problem for him due to yeast overgrowth, we switched again to GU Brew tablets.

Trial of Gluten-Free/Dairy-Free Diet - Again, I have no idea if this helped or not. The dietician/biochemist suggested he try a restricted diet. She did not suspect food intolerances but said that people with ME/CFS just have trouble digesting gluten and casein (a protein in dairy), and that these substances can increase fatigue and other symptoms because they block one of the methylation pathways in the body. Our son was NOT happy about such a restricted diet, but he was a good sport and went along with it. I joined in for moral support, and he and I ate strictly gluten-free and dairy-free (I was already dairy-free) for 7 weeks. His improvements began several weeks after starting the restricted diet and he didn't notice any improvements in GI issues, so after 7 weeks, he added dairy back in first and then added gluten back a couple of weeks later. Interestingly, he did notice some GI issues worsen when he added dairy back, so on his own, he decided to limit low-fat dairy (it is probably a lactose intolerance since higher-fat dairy products like ice cream and full-fat cheese don't bother him much). That was 6 months ago, and he is still doing well, so I don't think the gluten and casein were a major issue for him...BUT it is possible that eliminating them for a while helped his body to recover and improved his ability to process toxins by temporarily removing that methylation block. Who knows? Note that we later both adopted a modified Paleo diet, which does help.

I think those were the major changes we made. Once he began to improve, there was a cascade of positive effects that built on each other. As a result of his improvement, he was finally able to gradually increase his dose of antibiotics to treat Lyme to a full dose (for a long time, he couldn't tolerate more than 1 pill every 3 days!), so we are finally seeing some progress in his Lyme/bartonella/babesia treatment. I think this is a critical point to understand: when underlying infections are present (Lyme, other tick infections or reactivated viruses like CMV, enteroviruses, EBV, HHV-6), as they are in many people with ME/CFS, you can't improve until you treat those infections, and the immune dysfunction makes it worse. It is a vicious cycle, and you have to address it all  - treat immune dysfunction and underlying infections.

The beta blockers allowed him to exercise again, and he gradually built his stamina up as a result--this is something I have seen, too. Being able to exercise without crashing allows you to build muscle and improve cardiovascular functioning, which in turn helps to improve your overall physical condition and well-being, allowing you to do even more. He slimmed WAY down as a result and lost the bloated look he'd had. He now walks all over campus every day, plays Ultimate Frisbee with his friends (he's not yet in good enough condition to play in their tournaments, but he practices with the team and is gradually building stamina), and is taking 3 classes each semester. He lives on campus in a single room and stays up late with his friends like any other college kid (though he can go to bed early when he needs to). To our astonishment, he missed only 3 days of classes fall semester and has so far missed only 1 day in the spring semester (the result of 6 straight hours of snowboarding!).

It all still feels like a miracle to us, and we are grateful every single day. I wanted to share with you not only the specifics of what we think helped but also the hope. I don't know whether he (or I) will ever be 100% well, but improvement is possible. He is so happy to be living among his friends, going to school, and resuming a somewhat normal-ish life.