Changes in Lyme Treatment

Once again, I'm sorry for the long silence.  Last week was another very tough one - Jamie missed another four days of school - and I had a mini breakdown Friday evening when we ended up spending 4 hours at the local clinic waiting for his weekly saline IV.  It's just been a very difficult and challenging time for us lately.  Things are looking up a bit this week, though, and I thought you might be interested in what's been going on.

Jamie and I went to see our Lyme doctor in NJ last Thursday (part of the exhausting build-up to the breakdown!).  Jamie had to lie down in the backseat on the way there, and I had to do all of the driving - I had gotten used to his help!  I emphasized to the doctor just how horribly incapacitated Jamie has been.

The doctor decided to stop Flagyl, Jamie's current treatment for babesia and Lyme.  He was only taking a 1/2 pill a day (typical dose is 2-3) and was still so sick he couldn't even get up off the couch.  The doctor said it wasn't doing him any good right now because it was obvious that his body wasn't able to clear out the toxins (i.e. dead bugs) in his bloodstream (that's called a herx reaction), so it would be better to just quit for now, try something else, and maybe go back to the Flagyl at a later date when he can handle it better.  So, now he has prescribed doxycycline, at a relatively low dose to start with (half what I take), and then adding Plaquenil two weeks later.  This will target the Lyme most directly.  The doctor says the strategy with multiple infections is to target whichever one has the most prominent symptoms.  Lately, Jamie has had very severe joint pain which is a primary characteristic of Lyme (he was on the Flagyl to target babesia because months ago, he had severe night sweats).

So, that's the new plan.  Jamie stopped taking Flagyl last Thursday and has now been off all antibiotics for 5 days.  The result?  He's feeling much, much better.  He went back to school for a partial day on Monday and went all day Tuesday and is there again today.  This is such a huge relief to all of us!  Of course, he needs to start on doxycycline now which will almost certainly set off another herx reaction...but we are hoping this time it will be milder and more tolerable.

I spent all weekend online, researching how to lessen herx reactions and how to improve the methylation cycle.  The Lyme doctor mentioned this might help Jamie, and I told him I knew that was a problem with people with CFS, too, and that a couple of doctors had developed protocols for treating it.  Here's an article about treating the methylation cycle and a Q&A about using the simplified protocol.  The problem is that the doctor who wrote the Q&A says that people with Lyme should first get rid of their infections.  That's a real catch-22 because part of the reason Jamie can't get rid of his infections is because this process isn't working properly in his body.  So, we may try adding just one or two of the supplements suggested instead of the full protocol.

It's horrible to think of seeing Jamie suffer again, so we've decided to give him a short break off the antibiotics, to allow him to catch up at school and maybe even go to his Homecoming dance next weekend...but then. we will need to start the doxycycline and see what happens.

I would greatly appreciate hearing from anyone who has experience with the methylation treatment protocol or with taking a break from antibiotics during Lyme treatment.  It's so hard to know what are the right things to do sometimes.  For now, we are just trying to take things one day at a time, as always, and enjoying this brief good period.

Parenting a Child with ME/CFS

Is there any worse pain for a parent than seeing your child suffer?  It just tears your heart apart, especially when there is nothing you can do to help.

As you know, Jamie, our 17-year old son, has been going through a very difficult time lately, probably due to reactions from his Lyme and babesia treatment.  He missed the entire week of school last week.  He finally started to perk up a bit on Saturday and Sunday, enough that he was able to do some homework and even have friends over for a couple of hours each day.  So, he made it to school on Monday, but he came home feeling a bit worn out and with a headache.  By the time he came downstairs for dinner, he looked (and felt) terrible - severe headache, sore eyes, exhausted again, with awful joint pain and achiness.  By bedtime, he was just sobbing, finally releasing all his frustration and grief.  He said to us, "I'm missing out on everything!"

Our hearts just broke...again, as they have over and over during the past seven years.  We comforted him as best we could and helped him get ready for bed, but it all felt so useless.  It just feels so unfair that our wonderful son should have to suffer so much.  He's such a good kid (young adult, really) - kind and caring, loving life, a good and dedicated student. 

I do understand that we are fortunate in many respects - that medication has helped him so much in the past 5 years and allowed him to go to school, that his younger brother is doing so well, that we have each other and so many loving friends and family.  I also know that some of you reading this right now have kids in even worse shape, so believe me, I'm not complaining.  I just needed to express this grief I'm feeling, and you are the only ones who understand.  I can't share too much of this pain with friends and family.  It just makes people feel uncomfortable.

I believe wholeheartedly that things will get better, and we are taking many steps to try to help him improve and get through this difficult period.  That is my nature - to work toward improvement and to be optimistic for the future.  But it hurts so much right now.

He's doing a bit better this afternoon, still not able to go to school but certainly not as bad as he was last night.  No way around it but through it, right?

Movie Monday 9/26

Despite such a rough week last week, we ended up having a very nice weekend - just the right balance between getting stuff done and enjoying some quiet family time.  Jamie was feeling a bit better Saturday and Sunday and was able to have friends over for a couple of hours each day, so that perked him up quite a bit.  He still needed a good bit of downtime, so we took advantage of that and watched some great movies:

• Friday night, we all watched Limitless, about a very cool sort of sci fi concept.  A newly developed pill allows the person who takes it to use ALL of his/her brain (instead of the 20% scientists estimate we normally use), which results in some amazing brain power!  The main character, played by Bradley Cooper, becomes very successful taking the pills but gradually discovers there's a price to pay.  We all enjoyed it, and Jamie and I agreed that CFS is like the complete opposite of taking that pill!
• I went back to Redbox Saturday night, and we watched Source Code, another movie based on a very cool sci fi concept.  Jake Gyllenhaal is trapped in a loop, replaying the same 8 minutes over and over again, to try to prevent a terrorist from setting off a huge bomb on a train.  It's like a fast-paced, high stakes Groundhog Day.  We all loved this one, too - great suspense.
• Ken and I watched Adventureland after the kids went to bed and really enjoyed that one, too.  Set in 1987, recent college graduate James (played by Jesse Eisenberg of The Social Network fame) is forced to return home to Pittsburgh for the summer when his trip to Europe falls through.  He's not only stuck with his parents but also with a rotten job, manning the carnival games at a local amusement park.  The only thing that saves his summer is his pretty co-worker, played by Kristen Stewart, but things with her are complicated.  I loved the setting, the time, and the music (I graduated in 1987, too!).  There are funny moments in the movie, but it's also got some depth.  Lots of fun.

Have you seen any good movies lately?

How About Some Good News for A Change?

I don't know about you, but it's been another rough week around here.  Craig was home sick two days, and Jamie has been severely crashed all week and missed all five days of school.  I'm doing OK, but we're all feeling bad for Jamie.

So, when I heard some wonderful news yesterday, I wanted to share it with you.  One of our own has recovered!!

Many of you may remember Lori, the mom who blogged over at Living Chronically about her daughter's journey with ME/CFS and celiac disease.  Well, that journey is over now!  Jessica is well - completely and truly well - and is busy attending college and living the life of a happy, healthy young woman.  She has no symptoms, she can do anything she wants without crashing, and she no longer takes any medications at all. 

I talked to Lori about what helped and how she got to this point.  As is usually the case, it's impossible to tell and was probably a combination of things, including a measure of good luck.  Some of the treatments Jessica used that seemed to help with symptoms included:

• Treating sleep dysfunction and headaches with nortriptyline,
• Treating pain with Lyrica,
• Treating Orthostatic Intolerance with Florinef (Jessie was one of those kids who used to think it was normal to feel dizzy and black out all the time!),
• Lots of vitamins and supplements, based on bloodwork, including D3, B vitamins, multi-vitamin, fish oil, and CoQ10.

In addition - and perhaps most importantly - Jessica has celiac disease and is now on a gluten-free diet.  They suspected it for years and had tried gluten-free before, but she was officially tested and diagnosed in 2008 and stayed on a strict gluten-free diet after that.  Her symptoms didn't magically disappear as soon as she returned to gluten-free, but she has gradually improved over the years to where she is now.

They visited the Hunter-Hopkins Center in Charlotte, NC, and many of the treatments listed above came out of that.  Jessica was officially diagnosed with ME/CFS in 2005, so it's been a long and difficult process.  At one point, she had to quit attending school and finish high school online.

So, recovery IS possible and it DOES happen.  Dr. Bell's studies on kids and teens show that people who get ME/CFS as kids are more likely than those of us who got sick as adults to eventually recover, though I've posted stories here before of adults who have recovered as well.  I hope that hearing about Jessica's recovery inspires you and brings a smile to your face - not only in happiness for her but also in hope for all of us.

Movie Monday 9/19

Rough day...all three of us were down and out today.   Jamie played soccer on Saturday for the first time since spring - just three 10-minute periods, but that was enough to crash him.  Craig slept over at a friend's this weekend and forgot to take his Florinef...then forgot it again Sunday morning!  Plus, I think allergies are bothering him, too.  As for me, I've just been doing way too much for way too many days in a row - very achy today.  At least my husband is back home now, after a week away.  That helps!

Not much time for movies last week, and the kids were still totally engrossed with the TV series on DVD they've been watching most of the summer - Bones, The Office, Taxi, and their most recent obsession, The Big Bang Theory.  I did treat myself to one movie:

• After my exhausted kids went to bed early on Saturday night, I watched Remember Me starring Robert Pattison and adorable Emile de Ravin.  Annie over at It's Time to Get Over How Fragile You Are recommended it, but she also warned me it was really sad.  She was right on both counts!  I loved this movie; it's an in-depth character study of two people trying to recover from tragic losses in their lives who find each other.  Despite its sad moments, it's really a movie about the healing power of love and family.  Thanks for the tip, Annie!
• While away last week, my husband watched a couple more discs from the series The Pacific.  He watched Band of Brothers on previous trips and has really enjoyed both series set during World War II and produced by Tom Hanks.

Have you seen any good movies lately?

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

New ME/CFS Research Initative

Sorry for being so silent lately.  It was another insanely busy week here, with all the usual culprits (school, soccer, medical appointments, etc), plus my husband was out of town all week, so I was getting the kids to all their commitments on my own.  Also, my mom was visiting, and she and I hosted our book group (a wonderful, kind neighbor actually held it at her house for us; we just provided refreshments and book choices).  Anyway, it's just been very hectic.

But today I read such amazing, exciting news that I had to try to find time to share it with you!

A brand-new non-profit organization has been started specifically to fund and conduct ME/CFS research!  The Chronic Fatigue Initiative (I know, the name is a bit cringe-worthy, but read on), headquartered in NYC and privately funded, has initial plans for $10 million in ME/CFS research between now and 2014.  No, that was not a typo - $10 million!

Take a look at their website at the above link to read more details about their plans.  I was skeptical at first (it sounds too good to be true!), but their list of well-known CFS researchers participating convinced me.

The Wall Street Journal (and our good friend there, Amy Dockser Marcus) published a blog post yesterday with details about the new initiative.

Exciting news, isn't it?  So, raise a glass of grape juice tonight to celebrate the new opportunities and discoveries to come!

Movie Monday 9/12

Is it early enough in the morning to still count as a Monday post?  Whew, yesterday was just non-stop running, and I was pretty badly crashed.  Feeling better this morning, though, thanks to a good night's sleep.

We enjoyed a couple of movies this weekend:

• Ken and I watched The Lincoln Lawyer Saturday night - first time in a long time we've had a chance to watch a movie on our own!  We are both big fans of author Michael Connelly, so it's no surprise we enjoyed this movie based on his legal thriller.  Matthew McConaughey stars as a lawyer with a reputation for representing (and often freeing) low-life clients.  Then he lands a wealthy young man, played by Ryan Phillipe, accused of rape and assault and thinks he stands to make a lot of money in the case.  But things aren't as they seem, and he gets pulled further and further into a tangled mess.  Great suspense with lots of twists and turns.  Marisa Tomei stars as his ex-wife.
• When I saw Johnny English, starring Rowan Atkinson, on the library shelf, I knew the kids would love it.  I was right - all the kids, including Ken!, laughed hysterically at this British slapstick comedy about a James Bond wannabe.  It's basically a British version of The Pink Panther and Inspector Clousseau.  Not exactly my kind of thing but good for some laughs!

Have you seen any good movies lately?

Update on CFS Teens

OK, that's a weird title, but I couldn't think of anything better!  Both of my teen sons have tried some new things this week, and another friend of theirs as well, so I just thought you might be interested to hear what is helping so far.

As background, both of my sons have had ME/CFS for the past 7 years.  Craig, now 13, has a mild form of CFS that is completely controlled with Florinef (a treatment for Orthostatic Intolerance, a condition that affects more than 97% of CFS patients).  With Florinef, Craig is symptom-free about 95% of the time and able to do anything he wants.  Jamie, 17, has more severe ME/CFS, plus was diagnosed with three tick-borne infections - Lyme, Babesia, and Bartonella - 15 months ago (the infections have possibly been there for as long as 5 years).  Before Lyme, Jamie did fairly well on Florinef - it allowed him to attend school mostly full-time.  He has struggled for the past 4 months as a result of herx reactions from his treatments for tick-borne infections.

Craig has been doing so well that he wanted to try reducing his dose of Florinef this summer.  He normally takes 0.15 mg a day (one and a half tablets), so we reduced it to just one tablet (0.1 mg) a few weeks ago.  He seemed to still do well - slightly longer recovery time after sleep-overs but otherwise he seemed fine.  Then school started last week.  Between school, soccer practice, homework, and physical therapy for a knee injury, Craig was wiped out.  He had been sleeping 12-14 hours a night during the summer (!), and could only squeeze in 11 hours a night on school nights...and that's with going to bed at 8pm.  So, after seeing him struggle this week, we increased his Florinef back to his usual dose of 0.15 mg on Thursday.  I also increased him from  half to a full salt tablet (Thermotabs) and made sure he had a water bottle with him (he used to drink a liter of Gatorade a day but got sick of it).  Wow, what a difference!  Thursday evening at dinner, he was full of energy, smiling and talking...in other words, his usual exuberant self!  So, we discovered this is the right dose of Florinef for him, at least during the school year.

We've started two new things for Jamie recently.  We added a new medication, clonidine, to his regimen.  Dr. Rowe thought it might help with sleep, OI, and also secreting more growth hormone, as I explained in an earlier post.  Jamie already takes trazodone and nortriptyline to correct his sleep dysfunction, and they were working fairly well until he hit this rough period recently.  So, he took a half a clonidine for one week, then upped it to a full tablet last night.  It's hard to say yet, but we think it is helping.  Jamie said he woke up fewer times during the night after starting it, and he seems better able to sleep later in the morning (i.e. 7 am instead of 6 am).

Jamie also got his first weekly saline IV this Thursday, as I described in my earlier post.  Saline IVs can help people with CFS by increasing blood volume, which improves the symptoms of OI, thus improving just about all of the symptoms of CFS, especially energy and cognitive dysfunction.  Administering the IV went well.  Jamie was well-hydrated ahead of time, so the doctor started the IV easily.  Jamie got 1 liter (we may increase it later), and it took about an hour.  He saw some immediate improvements.  He slept much better that night - said he barely even remembered waking up at all and didn't get out of bed once during the night (amazing!).  He went to school on Friday - third day in a row this week - and said he had more energy than he'd had in weeks.

The problem with saline IV therapy is that its effects are only temporary.  Today, he is worn out and doesn't have much energy.  He just decided he won't try to play in his soccer game this morning.  However, he's not totally crashed - he is working on his homework right now and is still in very good spirits.  He's just being cautious and is hoping to save up enough energy to maybe have a friend over later.

A good friend of ours, a local 15-year old boy with CFS who also attends Jamie's high school, also got his first saline IV this week with about the same results.  He was able to go to school the next day but not the second day after (he is not usually able to attend school as much as Jamie).  Both boys may eventually work up to 2 liters IV infusion at a time, which is what Dr. Rowe (expert in OI, especially teens with CFS) does with his patients.

So, it was definitely a better week than the previous one.  Jamie made it to 3 out of 4 days of school, which was great after how sick he's been recently.  He seems to have finally recovered from the oral surgery he had last Monday.  We'll see how the coming week goes.  My husband and I keep reminding ourselves...one day at a time.

Have a good weekend!

Movie Monday 9/5

As predicted on Friday, we had a quiet weekend at home, helping Jamie to rest.  I wish I could say he is now in good shape, but he's still spending most of his time on the couch, a full week after his oral surgery.  There has been some improvement - he's sitting up more, he says his mind feels more clear, and he's certainly acting more like himself.  Saturday night, my husband said, "The spark is back in his eyes."  And last night, he joined us at the dinner table for an hour for an end-of-summer crab feast.  Still, it's not looking likely that he'll be able to attend school tomorrow...or perhaps at all this year.  We are still hoping that some new treatments might help get him back on his feet.

So, we took it easy this weekend and watched lots of TV and movies with Jamie.  I'm having trouble remembering everything we watched right now (!), but I'll try:

• Just to cheer ourselves up on Friday morning, after canceling our weekend trip, we all watched Ferris Bueller's Day Off.  We've all seen it before, but that only makes it funnier!  Just what we needed to get our minds off our troubles and laugh.
• Jamie watched Salt starring Angela Jolie, a great spy thriller that Ken and I had already seen.  He'd wanted to see it for a while, so was happy when I brought it home from the library.  Its twisty-turny plot keeps you guessing right till the end.
• Ken and I watched The DaVinci Code with Jamie while Craig was out with friends.  We'd seen it before, but I knew Jamie would love the suspenseful, clever thriller (and he did).  Made me realize I need to read Dan Brown's other novels that have been sitting on my to-be-read shelf for a long time.
• Craig had a friend sleep over last night, so Ken, Jamie, and I watched I Am Number Four, a sci fi thriller based on a popular YA novel.  It was excellent: well-acted, exciting, and fast-paced.  When it was over, Jamie said, "I have to read the book now!  And the sequel!"  The sequel, The Power of Six, was just released last week (in hardcover).
• While I napped today, Ken and Jamie watched Battle: Los Angeles about aliens invading earth.  From what I could tell, the title was accurate - lots of battle sounds!  I think they both enjoyed it.

In between, we continued our marathon of Bones, introduced the kids to the classic sitcom, Taxi, and watched a few episodes of Mad Men (Ken and I).

Have you seen any good movies lately?

(If you are also interested in what our family is reading this week, check out my book blog).

CFS Grief

It's been a long time since I've cried over CFS (yes, it does get better over time), but I cried this morning.  Not about myself but my son.  There is no worse experience in the world than seeing your child suffer and not being able to help him.

Jamie is no better, five days after his minor surgery.  In fact, he seems a bit worse, definitely in the grips of a severe crash.  Worse, this is not all due to his surgery this week.  He's been in terrible shape since about April, probably a reaction to his treatments for Lyme, bartonella, and babesia (tick-borne illnesses).

Whatever the causes, it is extremely difficult as parents to see him lie on the couch day after day while his friends run around being normal teenagers and getting ready for their senior year of high school.  My husband and I have been so upset these last few days, though of course, we try not to show it.

This kind of grieving is an integral part of living with chronic illness, but it never gets easier (less frequent, perhaps, but no less painful when it hits).

There is a very good chance that Jamie won't be able to attend school regularly this year, as he has for the past five years, since starting treatment for OI.  That is so painful to consider.  This is his senior year of high school; all we want is for him to be able to be a normal 17-year old.

We had to cancel our planned trip to visit my family this weekend.  We were supposed to attend my cousin's wedding tonight, a big family gathering tomorrow, and spend the day at a lake with my aunt and uncle and cousins on Sunday.  Instead, we're looking at yet another weekend spent in the family room.

OK, I'm trying to pull myself together and make the best of things.  Jamie and I have just started watching Ferris Bueller's Day Off on DVD - guaranteed laughs!

Surgery and CFS

I know I'm a bit overdue in writing this post.  I was waiting so that I could tell you how easily Jamie came through his oral surgery on Monday...but, alas, that hasn't happened.  He's had a severe sore throat and swollen glands since then, evidence that the stress of surgery caused a CFS flare-up/immune over-reaction.  He is improving, though, slowly by surely.  The swollen lymph nodes are almost back to normal.  Of course, his jaw is sore and stiff, too, from the extraction of his wisdom teeth.  Still, I think the surgical guidelines we used ARE helpful.  Who knows?  Maybe he'd be even worse off without the precautions we took.

We've been fortunate in our family.  Since getting CFS, none of us has needed major surgery, only minor outpatient procedures. I had a laproscopic exploratory for ovarian pain (there was so much scar tissue, the doctor couldn't even see my right ovary!), Craig had his adenoids out when he was 10, and Jamie just had his four wisdom teeth extracted this week.  All three of those surgeries were done out-patient but under full anesthesia.  In all three cases, we used Dr. Lapp's wonderful recommendations for people with CFS or fibromyalgia who are undergoing surgery.

This is a great article and highly recommended.  We print out copies to share with the surgeon and anesthesiologist.  You can read through the detailed guidelines yourself, but most of it focuses on the fact that most people with CFS (studies show more than 97%) and many with fibromyalgia have some form of Orthostatic Intolerance and so need special consideration for surgery and anesthesia.  For instance, IV fluids always help people with OI, and certain anesthesias, including nitrous oxide which is commonly used for oral surgeries like Jamie's, can worsen the effects of OI.  The article also covers typical nutrient deficiencies and medication sensitivities for people with CFS and/or FM.

Of course, the details of your own experience with CFS/FM are critically important to share with all medical personnel involved with your surgery - what medications (and supplements) you take, your typical symptoms, etc.  It took over an hour to review all of Jamie's medications and supplements over the phone with a nurse the week before his surgery!  I offered to just fax her the list, but she wanted to do it the hard way...  Supplements are just as important to discuss as medications, as they may have adverse effects for someone undergoing surgery, and you may have to stop taking certain ones a week before your surgery to protect your safety.  Jamie had to stop his melatonin for a week (he is relieved to be back on it now!)

Besides giving copies of the article to everyone ahead of time, we also make sure to talk to the surgeon and the anesthesiologist the day of the surgery.  This is easy to do because they come in to do a pre-surgery check anyway.

We were lucky.  From Jamie's first visit to the oral surgeon, he understood Jamie's medical challenges.  I don't know how familiar he was with CFS, but he certainly understood about POTS and NMH (i.e. OI). when speaking to medical personnel, I always mention POTS and NMH as well as CFS because these are common conditions that occur in non-CFS patients that they are more likely to be understood by medical personnel, even if they know nothing about CFS.  As soon as he saw Jamie's medical history and list of medications, he told us he would be doing Jamie's surgery in the hospital rather than in his office as he usually does. 

There were two reasons for this.  In the hospital, Jamie would get IV fluids which would greatly help to prevent OI symptoms, especially after fasting before surgery.  Secondly, the anesthesia typically used for oral surgeries, nitrous oxide, is a vaso-dilator, as Dr. Lapp explains in his article.  This means that it dilates the blood vessels, a very bad thing for someone with OI, making it even more difficult than usual for the body to properly circulate blood to the heart and brain (it's the same reason alcohol makes us feel sicker; it is also a vaso-dilator).

If you find that your surgeon or anesthesiologist is not so understanding or doesn't want to take the time to read the article (as was the case with our anesthesiologist this time), try saying something along these lines:

"The two most important considerations are IV fluids and avoiding vaso-dilators." (if you are unusually sensitive to medications, I would include that as a third point).

So, I thought the surgery itself went well, despite the resulting crash.  Jamie hasn't had severe OI symptoms since surgery, including less than his usual aches, so I do think the IV fluids helped.  I'm not sure there's anyway of preventing the immune system from over-reacting due to the stress.

Just keep your fingers crossed - tomorrow is his first day of school, and I really hope he is able to attend.

Hope you find these guidelines helpful if surgery is in your future.

Movie Monday 8/29

Well, we survived the hurricane, and Jamie came through his oral surgery this morning just fine.  We are hoping that the IV fluids he got in the hospital will help prevent a severe crash - time will tell.  He's got a sore throat and swollen glands, so that's not a good sign.  He's in a lot of pain now but enjoying his smoothie.  I will post again tomorrow about tips for people with CFS having surgery.

For today, how about a more fun topic?  Movies!  Since I skipped last Monday, today's post will cover two weeks.  We actually didn't watch a lot of movies partly because it's been so hectic here and partly because the kids are still totally hooked on watching old episodes of Bones!  It's a great series with a wonderful sense of humor.  As for movies:

• A couple of weeks ago, we watched Alice in Wonderland, the new version.  It was pretty much just what you would expect from a collaboration between Tim Burton and Johnny Depp: really, really bizarre!  We all enjoyed it - a very creative, colorful production, a totally new approach to Alice.
• We also watched The Truman Show starring Jim Carrey with the kids.  Ken and I had seen it many years ago, and the boys both loved it.  It's just such an ironic, insightful look at our voyeuristic society.  And talk about premonition!  One year after the movie was released, the first reality TV show, Big Brother, premiered.
• During the big sleepover this weekend, Ken and I watched The Hereafter, starring Matt Damon.  I've wanted to see this movie ever since it was released into the theater.  As its title indicates, it's about the afterlife.  There are three separate stories that eventually come together: Matt Damon plays a psychic in San Francisco who can sense messages from people's dead loved ones; there's a young boy in England who suffers a crippling loss; and a well-known TV journalist in France who has a near-death experience while on vacation.  I loved this thoughtful and thought-provoking movie!

Have you seen any good movies lately?

From Anxiety to Hope

Sorry I have been absent for over a week.  The hurricane coming through was the most relaxing part of my week!  Out of 5 days, I was out of the house and on my feet for 4 of them, including an all-day college visit, a massive shopping trip, and a trip back and forth to NYC.  I didn't crash until Friday evening, after NY, when I felt like someone had beat me up.  I mostly rested yesterday and am feeling fine again today.

But today's post isn't about me; it's about our 17-year old son, Jamie.  I've mentioned a few times recently that he's had a really rough summer.  It appears to be mostly due to herx reactions from his treatment of Lyme disease, plus two other tick-borne infections, babesia and bartonella.  Whatever the reason, the bottom line is that he has spent most of the summer lying on the couch in our family room, reading and watching TV.  He got his full, unrestricted driver's license this summer, but he barely drove at all.  He hardly saw any friends all summer either.

So, my husband, Ken, and I have been extremely worried about school starting next week.  The anxiety has been building because in his current state, there's no way he'd be able to attend school full-time as he has in recent years.  This is his senior year, so we have the added pressure of applying to colleges.  We've been visiting them this summer, all the while wondering how on earth he'll be able to manage it.

Another source of anxiety was his annual check-up with his pediatrician last week.  Jamie has only grown a quarter inch taller in two years and moved from the 90th percentile for height (where he'd been consistently since birth) to the 50th.  It's been proven through research that people with CFS generally secrete less growth hormone (GH) than healthy people because GH is secreted durng deep stage 3 and stage 4 sleep, of which we rarely get enough.  So, all this anxiety has been building, and we've been dreading the coming week when school starts again.

We are all feeling a lot better now, though, thanks to our visit to see Dr. Levine in NYC on Friday and some e-mail correspondence with Dr. Rowe.  Both of them have been immensely helpful!  This was the first time Jamie had seen Dr. Levine, though I have been her patient for about 5 years.  She's an Infectious Disease doctor who specializes in CFS and is on the CFS Advisory Committee for the Department of Health and Human Services.  I decided to take Jamie to see her because most of the treatments that have helped me the most have come from her.  We left with a whole list of treatments to try for Jamie, to help to control his out-of-control symptoms (mostly aches and exhaustion) and try to improve his stamina:

• Dr. Rowe suggested we try a new medication, clonidine, that is OK to take with Jamie's current medications and, if it is tolerated, can potentially help with sleep dysfunction (in addition to his current treatments for sleep dysfunction which help though he is still not getting enough deep sleep), Orthostatic Intolerance (currently treated with salt and Florinef though again he's gotten worse lately), and can help the body to secrete more growth hormone as well.  A triple bonus!
• Dr. Levine agreed to start him on weekly saline IVs.  This is becoming a common practice, particularly with teen patients, and is something else Dr. Rowe frequently does.  The IV usually has an immediate positive effect, increasing blood volume much more effectively than just drinking salt and fluids and improving OI, thus improving most other CFS symptoms (many of which result from OI).  Another local friend who goes to school with Jamie is starting the same thing next week, so his parents have already paved the way for us and found a local doctor willing to administer the IVs.  Obviously, this is only a temporary effect, but from what I've heard form others, it can really help for a few days afterward.
• Dr. Levine will probably also start Jamie on low-dose naltrexone (LDN) which has helped me quite a bit.  This was the #1 thing I wanted to ask her about for Jamie and was her first suggestion, so we were both on the same page with that one!  She took blood for lots of tests on Friday, but Jamie's previous tests a few years ago showed very low Natural Killer cell function, which LDN can help with.
• Finally, she will call us when his blood test results come in to discuss whether those present any additional treatment opportunities.

Jamie and I left her office on Friday in good spirits.  After months of worry and anxiety, we now have some hope.  Three treatments to try (and perhaps more) means three opportunities for improvement and a much more optimistic view of the coming school year.  I was interested to hear what Jamie thought, since Ken and I have been trying to hide our anxiety from him.  He told me over lunch that he's been feeling all the same anxieties and worries over all the same issues (duh! of course he has!), so he was also greatly relieved and feeling hopeful that we now have some options to try.

So, all of this has reminded me of a couple of truisms that I seem to keep relearning over and over again.  One, that it's always best to get things out in the open and talk about them.  And, two, that the best approach to CFS treatment is to persevere and keep trying.  If one thing doesn't work, move onto the next...try, try again.  Despite what we sometimes hear, there are actually lots of options for treating CFS, even though we don't know its cause yet.  Different things work for different people, and we just have to keep trying.  To that end, I will write the post I have been promising, about what has worked best for me and allowed me to be so active this summer.  With school starting this week, my writing time will increase exponentially!

Even the hurricane this weekend worked in our favor.  School has been canceled for Monday for my youngest son, pushing back the day when Seniors start to Thursday.  This will give Jamie an extra day to recover from oral surgery (assuming it's not canceled tomorrow).  He's having all four wisdom teeth out.  Fortunately, it's being done in the hospital, so he'll get IV fluids (he may actually feel better than he's felt in weeks, other than the pain in his mouth!).

Hope is a powerful thing.

Another Exhausting Week

I just don't have the mental energy to write a flowing, cohesive blog post tonight, so how about a rambling, disjointed one? (it just took me 10 minutes to think of "disjointed").

Another really exhausting week here, and Jamie and I are both in rough shape today.  These last two weeks before school starts are packed full for us, mostly with medical appointments, including several out of town.  So, this week, we started Craig's physical therapy (old knee problems we want to tackle before soccer season), got up early for Jamie's annual well visit, and drove to NJ and back for a visit with our Lyme doctor.

It seems that Jamie reacted badly to the two booster shots he got on Wednesday because he's been badly crashed ever since.  We didn't know what was going on until last night when we noticed a big, red swollen bump on his arm.  He had no reaction at all a couple of years ago to his meningitis shot, but he reacted badly to the booster this week...probably because his immune system is struggling now against Lyme plus two co-infections, in addition to the CFS.  So, he's been in bad shape the past two days, exhausted with severe aches.

Normally, Jamie helps drive back and forth to NJ (about 90 minutes each way), but yesterday he felt so bad that he rode in the backseat lying down.  And we usually enjoy lunch at Panera before we head back home, but this time, we just drove there, had our appointment, and got right back in the car to drive home again.  By the time we got home, I was pretty exhausted, too. 

My other problem is that I haven't been sleeping well this week - that's probably my main problem.  I think one of my new meds (Immunovir) was overstimulating me and disrupting my sleep.  It does seem to give me more energy and cut down on crashes, though.  So, I reduced the dose yesterday and slept a lot better last night.  Hopefully, I've got that straightened out now.

We both need to rest and recover this weekend because next week is even worse - blood tests for both boys Monday morning, more PT for Craig, a college visit Tuesday, an orthodontist appointment, Meet the Teacher night, and a trip to NYC for Jamie and I to see another doctor.  The following Monday morning, Craig heads back to school, and Jamie gets oral surgery at the hospital to get all four wisdom teeth removed.  The fun just goes on and on!

Time to chill out with some TV with my family...enjoy the weekend!

A Long Journey

We went away this weekend on a short vacation with my extended family to the Poconos where my mom and her husband have been living.  We only had to drive about 3 hours each way to get there and back, but it was light-years away from earlier family vacations when I was first sick.

There were 14 of us all together - 8 adults and 6 kids, sharing one house and all of our meals.  We had a similar vacation together in the Adirondacks six years ago.  In fact, I brought along a bunch of home movies and photo DVDs this weekend, and we watched a slideshow of that previous trip.  As everyone else in the room exclaimed in delight and said, "Wasn't that the best vacation ever?" I just kept my mouth shut.  That week stands out in my mind as the worst week of my entire life.

I was the sickest I have ever been, before or since.  I had tried to warn my mother that I wasn't up to a full week with family, but she took it personally and insisted we come.  By the evening of the first day there, I was plunging into the worst crash I have ever experienced.  I spent three days in bed, not even able to read, doing nothing but lying in the dark with my eyes closed.  I barely made it out of my room for meals.  I tried to be personable, but I was just so horribly sick.  I really thought I wouldn't survive the week.  This was early in my illness when all of my family was in deep, deep denial about how sick I was, so they all just pretended everything was fine.  It was a nightmare.

Contrast that to this past weekend...I had a great time and was able to participate in almost everything.  I helped with meals, went to the beach with everyone, paddled my son's kayak, and played games with the kids.  Sure, I still had to respect my limits - I took my daily nap, went to bed by 10 pm, and had to rest up a bit on Saturday morning after an active Friday - but I felt well enough to truly enjoy the vacation.  And it is so wonderful to see my kids having so much fun with their cousins, building bonds that will last a lifetime.

The best part of all?  Saturday night after watching some old home movies and telling stories of past escapades, we all laughed so hard there were tears pouring out of my eyes and I couldn't catch my breath.  There is nothing more rejuvenating than laughing until your stomach muscles hurt!  I felt as if I had my family back.

I have come a long, long way from those early years. 

Yeastie Beasties

Another busy week with no time for blogging!  We have a long weekend coming up with my extended family, so lots of work to do to get ready and packed.

I'm way behind here.  I've been meaning to bring you up-to-date on all sorts of things here, including our current battle against yeast overgrowth.

As you know, Jamie and I both have Lyme disease as well as ME/CFS.  In fact, Jamie has 3 tick-borne illnesses: Lyme, bartonella, and babesia.  So, we have both been on heavy-duty antibiotics for a long time (a year for Jamie and almost three years now for me).  Since antibiotics kill off all kinds of bacteria - both the good stuff in the intestines as well as the bad stuff - yeast overgrowth is always a possibility.

I've had almost three years on high-dose doxcycline with no signs of trouble at all.  I doubled my dose of probiotic when I started the antibiotics, and that seemed to do the trick for me.  I also take oregano and olive leaf, both of which are potent anti-fungals (as well as anti-virals and antibiotics).  Then, two weeks ago, I added another antibiotic, Flagyl, and within a few days, I noticed thrush on my tongue! 

As for Jamie, he has struggled with yeast overgrowth for at least 6 months.  I think his time on high-dose Zithromax is what did it (though it did help with his bartonella).  We noticed on our vacation in June that the thrush in his mouth had gotten pretty severe.  He was also experiencing other symptoms that our Lyme doctor told us were due to yeast overgrowth (terrible aches in his legs and weird itchiness on the undersides of his arms).

So, here's what we are taking each day to help combat yeast overgrowth:

• 4 Culturelle (a probiotic, contains lactobacillus)
• 4 Saccharomyces Boulardii (a probiotic that specifically targets yeast, recommended by our Lyme doctor)
• 4 New Chapter All-Flora - me only (my usual probiotic, includes 9 varieties, non-dairy)
• Olive leaf extract (4 for me, 2 for Jamie)
• 2 ADP (emulsified oregano)
• Drinking clove tea (me only, a friend recommended it)

With all of that, it still wasn't going away.  Jamie's improved a lot, but there was still some mild thrush.  I expected mine to go away easily since it had just started, but it's only slightly better.  So, last Monday, I called the Lyme doctor, and he also prescribed:

• 100 mg Diflucan, a prescription anti-fungal, for both of us.

Jamie's continues to get better.  Mine is still hanging in there!

So, that's our latest battle.  Just what we needed, more bugs to fight, right?  I'm interested to hear about others' experiences with yeast overgrowth, and would love to hear any tips on how to get rid of it.

Movie Monday 8/8

Monday again already?  We had a fairly busy weekend - yard work, birthday shopping, sleepovers.  I did manage to help out with both the yard work and the shopping, with no apparent payback, so that's a very, very good thing.  As for the yard work, using my heart rate monitor really helps me to stay within my limits.  Without it, I know I would have overdone and crashed.

On the good side, Ken is home this week and not traveling to Texas (where he has spent the past 3 weeks!), and we did find some time to relax and watch some TV shows and one movie:

• With Craig at a friend's house Saturday night, and Jamie having two friends sleep over here, Ken and I found time to watch a DVD.  We saw A Dog Year starring Jeff Bridges (thanks for the recommendation, Renee!).  It's an HBO movie, fairly short, and enjoyable.  It's based on the memoir by Jon Katz, an author whose life was falling apart until he rescued a dog.  
• With the kids, we continued our summertime tradition of catching up on TV shows on DVD - finished our Glee Season 1 marathon when Ken got home, watched more of The Mentalist Season 2, Num8ers Season 1, and lots of Bones, both Season 1 and Season 3.  All are great shows!

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.)

New Website on Latest ME/CFS Research

Sigh...here we are at Friday again...another week where I scarcely found time to write a blog post!  Summer is just so very busy for me, with my kids at home every day, plus my husband has been traveling every single week for business this past month.  It's taking all my energy just to keep up with the day-to-day stuff.  I took my laptop to the pool a couple of days ago, hoping to catch up a bit, but was just too worn out to do anything but lie in a lounge chair and read.  I am devoting this morning to some catch-up work!

Anyway, this post is long overdue.  At the end of May, the CFIDS Association of America officially launched its new website, Research 1st.  It's intended to provide a one-stop shop for everything related to ME/CFS research - the latest news, summaries of important studies, media coverage, and useful links.  The CAA asked me to be one of their initial reviewers of the new site, but with my 2-month long bout of bronchitis and our vacation, I never got to it until this week (bad blogger).

So, I have finally taken a look at the new site, and I am very impressed.  There is a wealth of information there, and it is well-organized.  It has become very difficult to keep track of all that is going on with ME/CFS research (in some ways, that's a good thing!) with all the controversies, increased media coverage, and so many different potential areas of study in this complex illness.  The new Research 1st site is a great place to go to get the latest information, to read more about specific areas of research, and to find out what's new in the field, all delivered in a very factual, unbiased way. 

Here are some of the features that I found most informative:

• A comprehensive list of studies currently recruiting ME/CFS patients (note that some of the current studies are even being conducted by e-mail and phone, making it possible for anyone to participate);
• A link to Dr. Daniel Peterson's new ME/CFS research foundation and its first two studies;
• A summary of all of the major XMRV studies to date;
• A very comprehensive summary of completed ME/CFS research studies (if you are feeling like nothing is happening in ME/CFS research, just read through some of these summaries!);
• The Research 1st Blog, a great way to stay up-to-date on the latest ME/CFS news.

I will definitely be using this new website a lot, and I have signed up to follow the blog.  Maybe that will help me to keep up a bit better than I have been this summer!  Check it out for yourself.

Movie Monday 8/1

I am determined to post Monday's post on Monday instead of Tuesday this week! (cutting it close, though).

Well, life has returned to normal here - there are currently 4 teen boys in our living room, playing video games and yelling, and I just fed all of them (did it smart and ordered pizza tonight!).  The house looks like a tornado came though it (like I said, back to normal).

Ours boys had a fabulous time on their grandparents' sailboat, as they do every summer - that's a photo Jamie took near Block Island, Rhode Island.  I did enjoy my quiet time, but it's good to have them back.  I watched quite a few movies last week - let's see if you can figure out at which point Ken came back home by the movie selection!

• I watched Bonneville on Monday, even though it was a bit late for a movie (I stayed up too late every night last week!).  I loved this movie about three old friends who go on a cross-country road trip together to scatter the ashes of one woman's husband, starring Kathy Bates, Jessica Lange, and Joan Allen.  It was warm and funny and highly recommended.  Besides, it's a road trip movie!  You know how I love my road trips.  Watching this got me feeling so nostalgic, I got out our old photo albums from some of our first road trips with the kids (to some of the same places visited in the movie).
• On Wednesday when I stayed in to just rest and recover from a busy week, I watched Eat, Pray, Love starring Julia Roberts, about a woman who embarks on a year-long journey to Italy, India, and Bali to try to find the balance she is missing in her life.  I had read the memoir and enjoyed it, and I thoroughly enjoyed the movie adaptation as well.  Perfect viewing for a night when I was trying to remember that sometimes I just need to take care of myself.
• Thursday evening, we watched Buffalo Soldiers starring Joaquin Phoenix as a bored American soldier stationed in West Germany before the Wall fell and Ed Harris as his kind but oblivious commanding officer.   In their boredom, Joaquin and the rest of the soldiers have set up a thriving business with the German black market, selling anything they can get their hands on, but they get in over their heads when they try to sell weapons to a mafia leader.  The DVD box kept saying how hilarious the movie is...and it does have its funny moments, but it's a very dark kind of comedy.  I don't know if I'd call any movie hilarious where just about every single character is dead by the end (I'm not saying which ones survive!).  So, it was definitely dark but also funny and interesting - we enjoyed it overall.
• Redbox gave me a free rental for my birthday this month (how nice!), so we celebrated our last quiet night alone together Friday with Unknown, starring Liam Neeson.  It was excellent, an exciting thriller about a man who travels to Germany (yes, odd that we watched two movies in a row set in Germany) with his wife to attend a conference.  He gets in an accident in a taxi and when he wakes in the hospital after a few days, he discovers that someone else has taken his identity and his place.  It's an intriguing premise, and neither of us saw the twist coming (and Ken always guesses this stuff!).  I almost felt guilty for watching it without the kids because Jamie would have loved this one! 

Oh, and once the kids came home Saturday night, we spent the rest of the weekend in a Glee marathon, trying to get through the entire first season set of DVDs before they are due back at the library - love that show!!

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.)

Taking Care of Me

At one point this week when I was feeling quite frazzled and worn out and worried about my newly diagnosed friend with MS, a dear and wise friend (you know who you are!) told me:

I hope you make certain to take good care of yourself - especially right now when your friend is going through so much turmoil....To help her best, you need to make sure you take care of yourself...This is a long haul process  (making it even more important for you to take care of yourself so that you can be there for the long haul).

Her words really hit home, and I took her excellent advice.  I stayed in that evening - by myself - and ate a simple egg dinner (I love eggs) and watched a wonderful, girl-y movie while lying on the couch.  It all felt so decadent, doing things just for me and not letting all the need-to-dos in my head escape and taunt me.  It was just what I needed, and I don't know why I can never seem to remember this simple advice when I am feeling so drained and wiped out.

I suppose some of the problem is simply being a woman - we just naturally feel as if we need to take care of everyone around us, and it's easy to forget our own needs.  And some of the problem is uniquely mine - despite all of the positive life lessons CFS has taught me (to slow down, to drop the perfectionism, etc.), I still tend to put a lot of pressure on myself to do everything and get everything done.  It seems I am destined to keep re-learning this lesson over and over and over again.

Overall, this has been a good week for me, a rejuvenating week with the kids away and Ken away much of the week as well.  It is truly amazing to me how easy it is to take care of a household of just one person!  I've only run the dishwasher once since Sunday and haven't done a single load of laundry all week.  The cleaning service was here a week ago, and the floor is still clean!  I went grocery shopping on Monday and was done in 10 minutes (astounding).  I found that cooking for myself only was so simple, and I tended to a lighter, more vegetarian diet (why buy a whole package of meat for one person?). 

Of course, as I do every year during this brief respite, I didn't get nearly as much done as I expected to.  For some reason, I assume being alone in the house will turn me into a productive hurricane of activity, somehow forgetting that my pace of life now doesn't leave much time or energy for actual work.  But, in the end, it turned out to be a nice balance between productivity and relaxing and between some much-needed social interaction and even-more-needed alone time.

And now this little pocket of quiet is coming to an end...just as I was getting the hang of it!  We will go to pick up the kids tomorrow, and life will return to its noisy, chaotic standard.  I'm sure the kids will be exhausted from their week with Gramie & Pop Pop, so I'm looking forward to relaxing with them on Sunday and enjoying some favorite shows together (the first season of Glee finally came in at the library - I can't wait!).

And this time, I swear I will remember to take care of myself.  No, really!  Well, if I forget, perhaps you can remind me.  And I will remind you - take care of yourself or you'll be no good to anyone else.  Enjoy the weekend!

Accepting the Gorilla in Your House

I mentioned a close friend was recently diagnosed with MS and is struggling to accept her new life.  Today, another friend (thanks, Denise!) sent along this wonderful essay about acceptance that I will definitely share with my friend.  In her current state of stress and anxiety, she is especially appreciative of humor, so I know this will hit the spot.  Hope you enjoy it, too:

By Helen Scott-Jackson

"Acquiring a disability is a bit like getting home to find there's a gorilla in your house. You contact the approved and official channels to get rid of infestations of wild animals (in this case, the NHS/doctors) and they umm and aah and suck air in through their teeth before saying something roughly equivalent to "what you've got 'ere, mate, is a gorilla, and there ain't really a lot what we can do about them, see..." before sending you back home to the gorilla's waiting arms.

The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can't deal with the gorilla, and leave. Your boss may get upset that you've brought the gorilla to work with you and it's disrupting your colleagues, who don't know how to deal with gorillas. You're arriving for work wearing a suit the gorilla has slept on. Some days you don't turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can't get out of bed. Your friends will get cheesed off because when you see them - which isn't often, because they don't want to come to your house for fear of the gorilla and the gorilla won't always let you out - your only topic of conversation is this darn gorilla and the devastation it is causing.

There are three major approaches to the gorilla in your house.

One is to ignore it and hope it goes away. This is unlikely to work. A 300-lb gorilla will sleep where he likes, and if that's on top of you, it will have an effect on you.

Another is to try and force the gorilla out, wrestling constantly with it, spending all your time fighting it. This is often a losing battle. Some choose to give all their money to people who will come and wave crystals at the gorilla, from a safe distance of course. This also tends to be a losing battle. However, every so often, one in a hundred gorillas will get bored and wander off. The crystal-wavers and gorilla-wrestlers will claim victory, and tell the media that it's a massive breakthrough in gorilla-control, and that the 99 other gorilla-wrestlers just aren't doing it right due to sloppy thinking or lack of commitment. The 99 other gorilla-wrestlers won't have the time or energy to argue.

I have known people spend the best years of their life and tens of thousands of pounds trying to force their gorillas to go away. The tragedy is that even if it does wander off for a while, they won't get their pre-gorilla lives back. They'll be older, skint, exhausted, and constantly afraid that the gorilla may well come back.

The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life. Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances. Negotiate with your boss about ways to accommodate, or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something in common, and share gorilla-taming tips.

Some people get really upset about this and throw around accusations of "giving up" and "not even trying". They even suggest that you enjoy having a gorilla around because of the attention it gets you (while ignoring the massive pile of steaming gorilla-turds in your bedroom every morning and night, not to mention your weekly bill for bananas). The best way to deal with these people is to smile and remind yourself that one day, they too will have a gorilla in their house."

I especially like that last paragraph!  If you'd prefer to listen to it, here is a Youtube video of someone reading it.

Ah, nothing like a good laugh to brighten your day!

Movie Tuesday 7/26

(sigh)...Tuesday afternoon (almost evening) already, and I still haven't written my usual Monday post, let alone any posts last week.  Things have been very busy lately, to say the least. 

One of my closest friends has recently been diagnosed with MS, and she is really struggling emotionally.  She is one of the few people that knew me well both before and after CFS and was there for me every step of the way, so I am trying to be there for her now.  Last week, I had her two boys (best friends of my own boys) over here most days, and this week, with my kids away for the week, I am trying to spend lots of time with her and support her.

On the plus side, yes, my boys are away for the week - on their annual sailing trip with their grandparents - so I am also trying to enjoy the very rare peace and solitude!  I had hoped (as I do every year - will I ever learn?) to get caught up on all sorts of things this week, but it's not really working out that way.  As you can see, I am still behind!

Anyway, last week was a crazy busy blur filled with lots of teen boys (with big appetites), packing the kids up for their trip, and this weekend, driving them to CT.  Then, Ken surprised me with an overnight getaway on Saturday for my birthday, which was very nice. 

So, there was no time for movies last week, though the kids and I still squeezed in a few episodes of The Mentalist and Bones.  On Sunday night, after Ken left for a trip, I was a total lazy bum and watched movies (chick flicks!) for hours:

• Nine Lives was a Sundance winner, a thoughtful combination of vignettes about nine different women all going through different challenges in their lives.  Each vignette was only about 12-15 minutes, so it was an unusual kind of movie, though the stories did begin to intersect a bit partway through.  I enjoyed it (and Ken wouldn't have!).
• Then for some pure fun fluff, I watched a couple of movies on FX.  The first was 13 Going on 30, a fairly predictable but pleasant story about a 13-year old girl who wishes she could skip her painful adolescence and be 30, and then, of course, her wish comes true and it isn't quite what she thought it would be.  It was cute and fun, and I liked Jennifer Garner and Mark Ruffalo in the lead roles.  I especially enjoyed the 80's scenes when she was 13!
• I really meant to go upstairs and read after that but got sucked into the next FX movie as well!  The Proposal was a typical romantic comedy starring Sandra Bullock who I really like.  She played a hard-ass NYC editor (much like Jennifer Garner's character in the previous movie!) whose work visa expires and is in danger of being deported to Canada.  Instead, she orders her executive assistant to marry her so she can stay.  They go to Alaska to meet his family and put on a good show for the INS and...well, I'm sure you can guess the rest.  Again, predictable but pleasant fluff!

Have you seen any good movies lately?

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

Movie Monday 7/18

Ah, today was a very quiet day around here.  The boys were still wiped out from a Saturday night sleep-over, plus Jamie and I were both still tired from visiting University of Delaware on Saturday (LOTS of walking!).

We did, however, find some time for movies this weekend, and they were all great:

• How about the big news first?  We actually saw a movie in the theater!  Yup, the only one we get to each year...Harry Potter (what will we do now that the series is finished?).  We took the boys and a friend of theirs to see Harry Potter and the Deathly Hallows, Part 2, yesterday, and it was fabulous, of course.  I also finished re-reading the book yesterday, and the boys and their friend watched movie #6 and #7, part 1, to catch their friend up before we went, so it was an all-Harry Potter day.  Lots of fun!  The movie was excellent, just like all the others, and a great ending to the series.
• Friday night, we watched Toy Story 3 with the kids, one of many big movies we meant to see in the theater and just never did.  It was wonderful, just as everyone said it was.  The whole series is just so incredibly clever, plus funny and touching.  I cried when Andy left for college (and Craig made fun of me again!).  Whatever will I do next year when it is my own Jamie leaving for college?  I think he teared up a bit, too.  Only Pixar can make me cry over animated characters (I cried at Up, too).
• While the boys were enjoying their sleepover Saturday night, Ken and I watched Pirate Radio and loved it!  It's about a pirate radio station on a boat off the coast of England in the 60's (apparently the regular British radio wouldn't play any rock 'n roll).  The disc jockeys are hilarious (one of whom is played by Philip Seymour Hoffman), the story is lots of fun, and the soundtrack is amazing!  Sex, drugs, and rock 'n roll...what's not to like?
• Finally, we have been using the summertime TV lull to catch up on some old favorite TV shows and get into some new ones.  Resting today, the boys watched back-to-back episodes of The Mentalist all afternoon!  We just started watching Bones this past season, so we're having fun watching season 1 and seeing how the series started.  And Ken and I are continuing to make our way (slowly) through past seasons of Mad Men.

Have you seen any good movies lately?

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

Summertime and the Living is...Crazy?

Whew.  Isn't summer supposed to be relaxed and easy?  Vacation was nice, with no to-do list or errands to run, but ever since we returned, I feel like I've been running on a giant gerbil wheel!

The kids and I have been running non-stop with doctor's appointments, shopping, errands, etc.  And most of what is keeping me so busy is all stuff that needs to be done again and again, so it doesn't seem like I'm actually making any forward progress - gerbil wheel, remember?  I've hardly done anything at all with respect to writing (supposedly my job!) since I got back.

Also, my sons are both teenagers now, so they're less content to just play here at the house with their friends.  My youngest has been needing rides all over town ever since we got back.  The only good aspect of this is that my oldest can now drive himself, so he has been helping with the taxi service a bit and taking care of his own driving needs.

So, the boys are out right now, and I am enjoying this rare moment of quiet solitude.  They went to Gamestop to buy a new game with some gift cards they had, and I am thrilled that I do not have to accompany them on this mission!  I am really missing my quiet, productive mornings to myself that I enjoy during the school year.

On the other hand, it is a huge relief to us not to have to worry about my oldest feeling well enough to go to school or how he will ever make-up all the work he's missed.  Summer is a lovely respite from all that anxiety, when he can just lie on the couch and spend a day watching movies whenever he needs to.  It's also nice having a break from homework, which makes our evenings stressful.  When your kids have to be in bed by 8 pm (and sometimes come home from school exhausted), it can be a challenge to fit in hours of homework, along with soccer and after-school activities.  And I don't have to get up at 7 am every day (nor my husband at 6 am). 

There are definite advantages to summertime.  I just need to find some time (or make some time) to relax and take care of myself.  The boys will be spending a week on their grandparents' sailboat soon, and I am looking forward to that week alone, when I can rest up and maybe even catch up.

Well, it's 11:30 am on a Friday, so I have decided that I am off-duty for the weekend!  Well, at least until tomorrow morning when we have a college visit with Jamie...

Rejected!

I returned home from vacation to find a response from the Social Security Administration in my mail.

The good news is that they have determined I am not disabled and can still work full-time as a management consultant - hey, isn't that great?  I wish I knew that years ago... think of all the income I could have been earning!

Specifically, they said:

We have determined that your condition was not disabling on any date...

While your conditions caused you to experience occasional bouts of extreme fatigue, the evidence shows your energy level was adequate for your daily activities.  Based on your description of the job you performed as a consultant, we have concluded that you have the ability to perform this same type of work as it is usually performed in the national economy.

Even though I expected to be rejected, this wording still feels like a slap in the face.  My state, Delaware, has one of the lowest approval rates in the U.S. (I think we're fourth worst with only a 37% approval rate in the first step).

I talked to my lawyer today, and they said it's no big deal, to be expected, and they will file the appeal for me.  I kept asking in-depth questions about what else I could send in to prove I'm disabled, but my contact just laughed and told me I'm reading way too much into what is likely a form rejection letter.  She said this is all normal procedure, they'll take care of it and will let me now if they need anything else.

So, more waiting now.

Movie Monday 7/11

I better hurry....I'm running out of Monday!

Very hectic day.  My husband had his first-ever colonoscopy today, so I had to take him which made for a long morning of waiting (everything is good and he doesn't have to go back for 10 years).  That, plus running my younger son and his friends all over town pretty much wore me out.  And I didn't get my usual Monday blog time either!

So, movies.  Since we returned from vacation last week, we have watched a few oldies but goodies - all movies Ken and I had seen before (some many years ago) but new to the kids:

• We ate at a Bubba Gump's restaurant in California, so we decided the kids needed to see Forrest Gump when we got home so they'd understand all the memorobilia and sayings they saw.  The movie is a cultural icon; it's just so clever.  We all enjoyed it and laughed a lot (and I cried!). 
• At the urging of a 92-year old woman we met in California (my aunt runs a care home), we watched Cocoon with the kids when we got home.  They weren't too thrilled with my description of the movie (it's hard to describe without giving too much away) but ended up loving it.  Another very clever, funny, heart-warming movie.  They just loved the old people (but of course, if you say it's a movie about old people, it sounds really boring).
• Tonight, we watched Ghost Town, a very funny romantic comedy.  Again, I had trouble convincing the kids it was good (you'd think they'd trust me by now!), but when they saw it starred Ricky Gervais, they were sold.  They ended up loving it.  Gervais is absolutely hilarious in this movie as a socially inept dentist who can see dead people.  Greg Kinnear and Tea Leoni are also great in it.

How about you - have you seen any good movies lately?

The Afternoon Slump

I hate afternoons.  Maybe that seems severe, but it's a consistent low point for me, every day.  I was just lying on my bed after my nap, trying to find the energy to get up and write a more in-depth blog post on another topic, and I just...couldn't...do...it.

I know everyone with ME/CFS is different and many of us have different high and low points, but my daily rhythm is the same, day after day.

As long as I get enough sleep (at least 9 hours, 10 is better), then I usually wake up feeling OK.  Morning is my productive time of day.  Once I've had breakfast (I wake up starving, thanks to low blood sugar) and my medications, I usually have some energy and can get some things done.  Sure, I have bad crash days like everyone else, but with my current regimen of medications, I can often function almost normally in the morning.  I spend some time on the laptop, make phone calls, try to work a little, and can even usually manage some errands. 

Afternoon is a whole different story.  Once I've had lunch (again, usually starving by noon!), it's all downhill.  I learned early on in my illness that preventative rest is very important for me, so I take a nap every day after lunch.  No matter how good I feel during the morning hours, I am ready to lie down and rest by early afternoon.  I do actually sleep during my rest time, and my entire family (and my kids' friends!) know this is a sacred ritual for me.  I take two Valerian (a mild herbal sedative) to help me relax, darken my bedroom, and cover my eyes.  I usually read for a little while first in bed, but then I close my eyes and almost always fall asleep (another thing that helps me fall asleep is to put on warm socks - I read somewhere that warming your feet helps you sleep and it's true!).

As much as I need that nap, I usually wake up feeling groggy at first.  During that post-nap period of late afternoon (worst time of day for me), I have no energy.  I feel like my limbs are filled with wet cement.  Even when there are urgent things I need to do, I can barely motivate myself to do anything.  I just want to lie in bed with my book or on the couch watching mindless TV.  My brain, which was lively and functioning well hours before, feels sluggish and slow.  I have learned not to schedule anything in the late afternoons, so I can just go with the flow and rest.  This is the time I generally set aside for visiting blogs and for writing my own blog (which explains why I haven't been keeping up with them very well!).

By dinnertime, I am usually starting to perk up, though I often have to force myself up off the couch to make dinner.  Once I eat dinner, I usually feel OK again; I don't have the high energy of morning, but I am able to enjoy my evening (this is why we often eat dinner very early, at 5-6 pm).  By about 8 pm, I am wearing down a bit and glad to spend an hour or two relaxing with a movie or TV show with my family.  I go to bed about 10 or 11 (in summer) and start the cycle all over again.

Despite feeling so rotten after my nap, I know I am even worse if I skip it.  Several times on vacation, I wasn't able to take my nap until 4 or 5 pm, and I really suffered for it!  By 3 pm, I can hardly keep my eyes open, and by 4 pm, full-blown crash symptoms are starting to creep in.

So, I know the nap helps, but I still dread the late afternoon. 

Oh, shoot....it's almost 5 pm.  I'll have to drag myself up to get dinner ready soon.

How about you?  What's your daily rhythm?  Do you also dread afternoons or do you have your own slump at a different time of day?

Back From Vacation!!

Hi, everyone!  We arrived back home at 2 am this morning from our 3-week vacation in California.  Sorry to just sort of disappear, but I didn't want to announce on the internet that we'd be gone for 3 weeks.  Also, I was seriously ill with bronchitis before we left, so I had no time at all for blog posts the week before the trip.  Thanks to those of you who checked in on me and asked if I was OK.

I have 882 e-mails, a huge bin of mail, piles of dirty laundry, and a washing machine that's been holding wet towels for 3 weeks (eww!), but I'm too exhausted  to deal with any of it.  I'm too worn out for blog posting, either, but it just occurred to me that it might be nice to talk to people who would understand.

Don't get me wrong - it was a fabulous vacation!  We visited mountains, beaches, waterfalls, and cities.  We camped and stayed in nice hotels and even spent two nights in a treehouse!  We've taken a lot of great trips, and this was one of the best.

But, I got very, very sick while we were out there.  The bronchitis I had before we left came back with a vengeance during the second week of the trip, and we spent a half a day trying to get through to my doctor to refill my antibiotics.  So, now here I am, after another 8 days on abx (10 days for the first round), and I am still horribly sick - still very congested plus totally exhausted.  Of course, despite being so sick, I just kept going and pushing myself.  I didn't want to miss out on anything or ruin my family's vacation.  And I DID enjoy it, but I know I pushed way too far.

So, I am trying to rest, though it's hard with so much to do.  I suspect I will be back at the doctor's office when they re-open after the holiday weekend.

I probably won't be posting much this weekend, but in the meantime, please feel free to take a look at our family trip blog if you'd like to see pictures of how we spent the past 3 weeks.  If you scroll down to June 10, 2011, you can see the posts in order.

Enjoy the holiday weekend - I missed you guys!

Movie Monday 6/6

Well, I am finally coming up for air after 10 days spent completely incapacitated.  Whew, this was a bad one.  As always with this particular type of crash, I ended up with a bad case of bronchitis.  I finally started to feel better this morning.  My oldest son, Jamie, says he is feeling a little better, too - he's been in bad shape for weeks now, probably a reaction to his Lyme/bartonella treatment.  So, we've had a rough time here.

My dad and his wife came to visit this weekend, but we were pretty dull!  Jamie and I were both stuck lying on the couch (we took turns), and we watched a lot of TV.  We did see a couple of movies to break the monotony:

• Saturday night, we all watched The Green Hornet.  I expected a typical superhero movie, but this was more of a comedy (Craig told me I should have known that since Seth Rogen is the star).  It was very silly and actually pretty funny.  Since laughs were just what we needed, we all enjoyed it.
• Craig went to the pool with a friend Sunday, and Jamie and I were still feeling awful, so we browsed through the On-Demand movie choices and watched The X-Files Movie with Jamie.  Ken and I have seen it (maybe twice) before - we were big X-Files fans - but Jamie has never seen the show or the movies.  We explained it was about two FBI agents investigating paranormal stuff, and his eyes lit up!  He liked it very much and is now looking forward to watching the old TV episodes this summer.
• With school winding down, the boys don't have as much work to do in the evenings (well, Jamie just hasn't had the energy for much work), so went back to the On-Demand movie menu last night and ended up watching Get Shorty with the boys.  Ken and I saw it years ago, but we enjoyed watching it again with the boys.  Craig thought it was a bit too complicated (which it is!), but Jamie loved it.  John Travolta is just so good in that role.  We'll have to rent Pulp Fiction for Jamie, too.  

Well, we probably won't be watching any more movies for a while.  The boys have final exams this week, and I need to make up for those 10 days spent in bed and on the couch.  We have very little time now to get ready for our upcoming vacation.  Busy, busy!  Of course, I will have to be careful not to get too active too soon.

Have you seen any good movies lately?

Science Requests Retraction of Original XMRV Paper

XMRV and CFS are once again being splashed across all the major news media this week, though this time it's a big step backward.

The editors of the magazine Science, which published the seminal XMRV paper in October 2009, have issued a request to the paper's authors that they retract the paper, in light of the negative XMRV studies that have been published lately.  This news, with a strong negative spin, has been reported in all the major news media, from NPR to the Wall Street Journal to Scientific American, plus in many local papers and news shows and as far away as Australia.  Here's a short summary from the New York Times.

Of course, Dr. Mikovitz of the Whittemore-Peterson Institute issued a response.  You can read it at the WPI website (click on the two documents posted on May 31, 2011).  She once again defends their original research, points out flaws in the contamination theories, and states that this action is premature.

I try to stay away from all the various conspiracy theories that tend to circulate around ME/CFS, but this request from Science is so ludicrous, so premature that it's hard not to think that someone really is out to get us.  Most  knowledgeable scientists (other than one or two on the fringe) agree that this subject is far from closed and that more research is needed.  In fact, a couple of huge, government-sponsored, multi-center studies are in progress right now.  Why on earth would anyone try to cut off debate right in the middle of all this?  It goes against all principles of scientific study.

Let's just hope that logic and science prevail, so we can get more data and more information before jumping to any conclusions.  Unfortunately, though, no matter what happens going forward, the damage has already been done with all of this negative media coverage, and we are once again in the position of defending ourselves and our right to full scientific investigation.