Wednesday, September 29, 2010

Visit with Infectious Disease Doctor

I took a trip to NYC yesterday to visit my Infectious Disease doctor, Dr. Levine, who specializes in CFS  and is a recent addition to the CFSAC board.  I hadn't seen her in person in a couple of years.  We generally keep in touch by phone and e-mail; I send her lab reports and she renews my prescriptions.  I decided I was overdue for  a visit and was interested to hear her thoughts on the new retroviral research.

Here's a summary of what we discussed:

I told her about my 9-month long relapse last year that started in the fall, most likely from a viral trigger, and asked for her thoughts on what I might do to improve my immune system function so that I can avoid a similar fate this winter.  She wants me to stay on low-dose naltrexone, which has definitely helped. 

She also asked if I wanted to try Immunovir, which she learned of through Dr. Lucinda Bateman and has been using with some of her CFS patients.  Yes!  I told her I knew about Immunvoir and tried to get it early on in my CFS illness but couldn't find anyone to prescribe it.  Here's an article from the CFIDS Chronicle in 2001 that explains how Immunovir might help to treat the immune system dysfunction of CFS. 

This article also does a good job of explaining the Th2 dominance that is prevalent in many CFS immune systems, something I've been meaning to explain in a blog post for a while now.  As extra background, Th2 cells act against viruses and allergens, which is why our dysfunctional immune systems over-respond to those triggers, and Th1 cells act against bacterial infections, which is why we are more susceptible to those types of infections.  Here's another article describing a 2009 study of Immunovir in CFS.  This medication has been used safely for decades in Europe and Canada but is not readily available in the US, which is why I couldn't get it before.  So, I'm very excited about trying this medication.

Flu Shots
I have always avoided flu shots, feeling that any extra stimulus to my immune system should be avoided, but after my extended relapse last year, probably triggered by exposure to some sort of virus (maybe the flu), I've been having second thoughts.  I asked Dr. Levine for her opinion, and she said it was exactly the same as mine!  She used to avoid them for all of her CFS patients but has changed her mind after last year's bad flu season with the H1N1 flu.  So, she has begun giving some CFS patients flu shots...and so far only 1 patient had a bad reaction (a crash caused by the shot).  So, I think I'll go see my primary care doctor and get one this year.

I asked for her take on all the recent retroviral research.  She's been attending the conferences and talking to the experts, so she's up-to-date on all the latest news.  She said she isn't testing patients yet because the test just isn't reliable yet.  She tried sending some patient blood samples to the lab in Nevada, VIP Dx, but the results were inconclusive.  In some cases, two samples from the same patient came back with different results, one negative and one positive.  So, there's no sense in spending the money for testing yet - and no point in treating without a reliable test.  She thinks a better test will be available very soon.

So, overall a very good visit.  I'm glad I made the trip.  Even better, I feel fine today!  No crash after a long day spent traveling back and forth to NY (about 90 minutes by train each way).  I walked much more than I have been lately, so I was pleasantly surprised to feel well today!  I'm even planning to go to my book group tonight.  I think that a new immune system supplement might be helping me, but I just started it last week while I was sick, so I'm waiting to see if it's really helping or if this is just a fluke.  I'll let you know!

Help Support CFS Research!

iGive, a charitable website for shopping and searching, has a great promotion going on for the next 24 hours.  For each new person who signs up (it's fast and free) and does just one search using iGive, they will donate $1 to the cause of your choice, plus a bonus $5 the first time you use iGive to shop.

I have used iGive for many years, with the CFIDS Association of America as my designated charity.  I have iGive set as my homepage, and I use it for almost all of my internet searches.  For each search, they usually donate 1 cent (aside from this 24-hour promotion).  In addition, anytime I shop online, I go to iGive first, access the store site through iGive, and some percentage of what I buy is donated to the CFIDS Association (it varies between stores).  Almost every online store you can think of is included.  As a nice bonus, when you link to a store through iGive, they let you know if the store has any current deals or coupons.

It might not sounds like much, but it adds up!  According to the iGive statistics, so far over $4500 has been donated to the CFIDS Association through iGive!

To sign up for the special promotion, you must use this special link.  Go sign up now!

Monday, September 27, 2010

Movie Monday 9/27

I'm finally feeling better and starting to return to normal - my own normal, that is.  I even went to the dentist this morning (what a thrill!).

Tomorrow, I'm taking the train to NYC to visit my Infectious Disease doctor.  I haven't seen her in person in a couple of years (we keep in touch by phone and e-mail).  She's a CFS expert and is one of the newest members of the CFSAC, so I'm interested to hear her perspective on all the retrovirus research.

I was still sick through most of the weekend, so I wasn't able to stay up late enough to watch any movies with Ken after the kids went to bed - instead, we're still watching episodes of Mad Men and The Mentalist on DVD - we've really grown to like The Mentalist a lot!  We did watch a couple of movies with the kids:
  • Craig had a sleepover Friday night, so I chose a movie I thought Jamie would enjoy - Surrogates, a sci fi thriller.  It's about a future world where no one leaves their homes - everyone has these life-like androids called Surrogates that they control from virtual reality chairs in their house.  Because of this, crime is almost non-existent, but when someone starts killing people through their Surrogates, a police officer (played by Bruce Willis) has to leave his "Surry" behind and step out on his own.  An enjoyable movie if you like sci fi action flicks.
  • Saturday evening, we watched a classic with the kids, The Sting, which won an Academy Award for Best Picture in 1973.  They enjoyed it very much - it's fun to see such a young Robert Redford and Paul Newman.  (Craig said, "Paul Newman - isn't he the salad dressing guy?  I didn't know he acted."  Talk about a generation gap!)
Have you seen any good movies lately?

Saturday, September 25, 2010

Quote It Saturday 9/25

Well, rumors of my recovery on Thursday were somewhat premature.  I'm out of bed more now but am still really exhausted and weak.  I watched Jamie's soccer game this morning and felt like I was the one who had run for 90 minutes, instead of sitting on the bleachers watching.  Even worse than the physical exhaustion is the apathy.  I just don't care about anything - that my family's been eating take-out all week, that the house is a mess, that the laundry is piling up.  All I want to do is lie in my comfy bed with my book.

I shouldn't be sounding so whiny and down.  I am making progress each day - it's just very slow progress.  And the antibiotics have definitely helped my chest congestion, though I still sleep half-sitting up, propped with extra pillows (I'm kind of getting used to it).

On the plus side, I have been reading non-stop for the past 8 days and enjoying lots of good books.  I thought I'd share a quote today from The Shipping News by E. Annie Proulx, a quirky novel set in Newfoundland that won both the Pulitzer Prize and the National Book Award.  One of my book groups will be discussing it this week.  The main characters struggle with some terrible tragedies but keep moving forward (a good lesson for me this week):

We face up to awful things because we can't go around them, or forget them.  The sooner you get it over with, the sooner you say, "Yes, it happened and there's nothing I can do about it," the sooner you get on with your own life.  You've got children to bring up.  So, you've got to get over it.  What we have to get over, somehow we do.  Even the worst things.

          - The Shipping News, E. Annie Proulx

So, I'm trying to rest as much as I can and get over it.  Hope you're enjoying a restful weekend.

Thursday, September 23, 2010

Emerging From My Cave...

Hello?  Anyone out there??  (blink, blink)  Wow, its bright out here...

I am slowing coming back to life after being completely incapacitated for the past week.  It rarely happens, but I seem to have caught one of the many viruses going around at my kids' schools (lots of people around here have been sick).  Anytime I get congested, it develops into bronchitis, so I went to see my doctor last night.  Sure enough, she said my lungs were rattling pretty badly and put me on antibiotics.  I'm still not sure how a bacterial infection could develop when I've been on high-dose doxycycline for two years for Lyme, but there it is.

For the first few days, I tried to still maintain some semblance of normalcy - came down to the couch, used my laptop a bit, etc.  Then, I just gave up and crawled into bed.  It was such a relief to do that!  I've really done nothing for 7 days but sleep, eat, and read.  Thank goodness for books.  My huge collection of kids' and teen books really came in handy (I review them) - nice short, easy books with gripping plots!

I'm still exhausted and very weak but managed a bit of upright time today and started to catch up a bit - e-mails, bills, etc.  Coming back, slowly.

I've missed all of you!!

Monday, September 20, 2010

Movie Monday 9/20

Still really, really sick, so I'll keep this short.  I spent too much time on the laptop earlier and paid for it...but I miss you guys!

Ken was away most of last week and I was too sick to stay up late enough for movies this weekend, but we saw a few oldies with the kids:
  • Jamie had a very busy social schedule this weekend, so we watched the first two Back to the Future movies with Craig.  We'd seen them before, but they were on TV, and he wanted to see them again.  The first, of course, is a classic.  The second is OK but the future scenes are a bit hokey.  I think he may have watched the third one the next morning.
  • On Sunday morning all of us were in our usual Sunday state of exhaustion, and we ended up watching School of Rock on TV.  We've probably seen it a dozen times (Craig maybe a hundred times!), but it's such a good movie!  A favorite at our house.
  • Sunday evening we watched Kindergarten Cop with the kids.  They've been wanting to see an Arnold Schwarzenegger movie from before he became the Governator, so I got this 80's movie from the library.  They loved it (and we enjoyed it, too).
Seen any good movies lately?

Musician Sings About CFS

Still badly crashed and so grateful that my blog readers (and friends!) are keeping me supplied with great links when I'm not able to write much.

Cinderkeys, aka Susan Wenger, is one half of the musical group Cinder Bridge.  Susan is close to someone with CFS and sings some wonderful, original songs that really get to the heart of living with chronic illness.  Check them out at her blog, along with a special release for Invisible Illness Week (last week).

Thanks, Denise!

Post-Exertional Malaise - Complete Series

There was such a wonderful response to my posting of Jennie Spotilla's article series on Post-Exertional Malaise last week!  Glad you found her articles as valuable and informative as I did.

Jennie let me know over the weekend that there was a fourth article that I missed, so here's a link to the full 4-part series on Post-Exertional Malaise.

(And, yes, please feel free to link from your own blog or share with your friends and family).

Sunday, September 19, 2010


Still too sick to be on the computer for more than a moment or two but just had to share this hilarious blog post from Cranky Fibro Girl.  Loved this!!  Boy, do I ever need a Chronic Illness Delusional Intervention Fairy of my own!  Thanks very much to one of my blog readers, Baffled, for passing this along to me so I could share it with you.

No delusions this weekend - can't do anything but read and sleep.  Thank goodness for good books.

Friday, September 17, 2010

A Doctor's Testimony to CFSAC

I am in the worst shape I've been in in years with one of those sore throats that feels like I swallowed barbed wire, but I had to share this with you.

This is a doctor's testimony for the upcoming CFSAC meeting about how she and her daughter have benefited from anti-retroviral drugs.  Wow, I hope someone listens.

Excellent Articles on Post-Exertional Malaise's a Plan B know, the kind where you wake up so severely crashed that you have to completely dump all your plans for the day and just give in to the need to rest.  The kind of day when just pushing through is simply not an option.  I haven't had one of these in a long while, so I guess I'm due.  I'm not sure if it's your run-of-the-mill Did Too Much crash or if one of the many cold viruses floating around triggered it.  It's only the third week of school, but my kids tell me lots of their classmates already have colds.  'Tis the season...

So, I have to postpone my plans to go into more detail on 504 Plans, but I promise to get to it next week.  Instead of me doing the writing today, I thought I'd share some really excellent articles on Post-Exertional Malaise (PEM) by Jennie Spotilla a former CFS blogger and member of the CFIDS Association's Board of Directors.  Jennie is a wonderful writer and did a fabulous job researching, interviewing, and writing this 3-part article series:

Part 1: Unraveling Post-exertional Malaise
Part 2: Post-exertional Malaise Perception and Reality
Part 3: Post-exertional Malaise: Cause and Effect

Jennie's articles are easy to understand and get at the bottom of this euphemistically-named symptom that I have always felt is at the heart of CFS.  As soon as I was diagnosed and began reading about CFS and learned about its characteristic exercise intolerance (aka PEM), I knew it was one of the critical pieces of the CFS puzzle.  It is the one unique defining characteristic of CFS, and, for me at least, is the hardest part of the illness to live with.

So, check out Jennie's wonderfully written articles.  I'm going to set the laptop aside, turn off the TV, and just relax with my book and my herbal tea.

Thursday, September 16, 2010

Craig has a 504 Plan!!

Sorry I haven't posted much this week.  Ken was out of town for most of it, so I've been on double-duty, including the early shift, getting up at 6 am each morning, with hectic evenings of running the boys around.  I am wiped out, exhausted, pooped...uh, so tired I can't even think of more words for it.

But I wanted to share some very good - and much overdue - news.  After 4 years of struggling, we finally got approval this morning for Craig, our 12-year old, to have a 504 Plan at school.  For those of you unfamiliar with US school issues, this is an official document, backed by the Americans with Disabilities Act, that spells out accommodations the school will make to help Craig deal with the effects of his illness at school.

We requested one for Craig four years ago, in 3rd grade, when Craig was first diagnosed with CFS and OI.  Even though he missed more than 30 days of school that year, the school's 504 committee (consisting of several people who didn't even know Craig) said that he wasn't eligible for a 504 because he got good therefore, his illness obviously didn't affect his education.  We fought this decision, pointing out that CFS is unpredictable, that Craig was doing well only because his current teacher was helping him after his absences, that we needed something official in place to ensure future teachers would cooperate, and that his older brother, affected the same way by the same illness, had had a 504 plan in place since 5th grade (at other schools in the district)...but to no avail.

The guidance counselor (and 504 Coordinator) at Craig's school also happens to be the mother of one of Craig's friends, and she's always been very supportive of him.  The school has a new principal this year, so we were even more nervous that our previous "hand-shake agreement" wouldn't necessarily be upheld, so the counselor suggested we give it another try.  At 7:50 this morning (yes, another early morning!), Ken and I met with the new principal, a 504 coordinator, the school nurse, and Craig's current teachers.

This time, things were different!  I brought a list of the basic accommodations that are in Jamie's 504 and that we were requesting for Craig, I pointed out that we were already doing all of these things, but informally, by e-mailing the teachers each year and requesting their help.  Craig's teachers were incredibly supportive!  When the old argument came up that he was getting good grades, his social studies teacher said, "Yes, but that's WITH these accommodations in place.  That's the point - they should be formalized."  His math teacher spoke up and said she had taught Jamie in 7th grade, with the exact same 504 Plan, that it worked well, and that Ken and I were very supportive parents who would never abuse the accommodations (see why she was one of Jamie's favorites?).  The new principal voiced his support, too.

In the end, every single person at the meeting agreed that he should have a 504 Plan, and the meeting coordinator said she'd use the list we'd written and have one for us to sign within a week. 

Even though Craig is doing very well for a kid with CFS, thanks to Florinef, having this document in place gives us peace of mind that when the unpredictable happens (as it always does with CFS!), Craig will be backed up by an official document and the federal law.  If we get another loser teacher like he had in 5th grade, who doesn't want to help Crag after his absences, there will enforcement behind the Plan, not just Ken and I saying, "you need to do this."  And when Craig moves on to high school in a couple of years, these accommodations will already be in place to help ease the transition to a new school.  Peace of mind!  We are very excited.

Well, this post is already too long, and I still feel rotten (killer headache, too - I wish this storm would hurry up and come through).  Tomorrow, I'll post the list of accommodations, plus additional ones we've used in he past, to help give parents an idea of what kind of help is available, if you know what to ask for.

Monday, September 13, 2010

Movie Monday 9/13

Wow, my desperate post on Friday really struck a nerve, didn't it?  I was feeling so overwhelmed and worn out that I just typed a stream-of-consciousness post about my inability to relax, and I was pleasantly surprised by all the wonderful responses!  Looks like this is a problem for many of us who were used to being very productive in our former well lives.  I appreciated all of your supportive comments and wonderful suggestions...and I put your advice to use immediately!

I made a real effort this weekend to not drive myself crazy trying to get things done and to take some time out to just relax with my family.  The only time I spent on my computer was in a delightful volley of comments on Facebook with some old classmates from elementary school, after one guy posted a photo from our fourth grade play, Mr. Grumpy's Toy Shop.  What fun to reminisce and rediscover friends I hadn't seen in 30 years! 

After a busy Friday and Saturday, all four of us were pretty wiped out yesterday, so we just hunkered down in the house together and took it easy.  The boys each had a little homework to do, but otherwise, we gave ourselves a break and watched two movies together - one of them in the middle of the day!  (oh, the scandal...)  The dark and wet weather cooperated with our lazy spirits for a nice quiet Sunday at home.  And the movies?  All were excellent:
  • Friday night, Ken and I stayed up way too late watching Shutter Island.  I read the book a few months ago, so I knew how it ended, but I didn't remember all the details.  I thought this was an excellent book adaptation - it stuck very close to the book and really captured the plot and characters well.  It's the very spooky story of a Federal Marshal who is called to a mysterious island to investigate the disappearance of a patient from an isolated facility for the criminally insane.  We both liked it.
  • I watched another book-to-movie adaptation last week during my lunches: Memoirs of a Geisha.  I've quoted from this beautifully written book a couple of times here in my blog.  In this case, the movie did not - and could not possibly - live up to the standards of the book, but I wanted to see the visuals of the time and place the book is set in, the early years of the 20th century in Japan.  The movie didn't capture the depth of emotion of the book, but I did enjoy seeing such a wonderful book brought to life on the screen.
  • With the kids on Sunday, we watched The Pursuit of Happyness, a wonderful and inspiring story of how a man, played by Will Smith, and his young son, played by Smith's real-life son, Jayden, went from living on the edge to homelessness and back out.  Ken and I had seen it before, so I knew the kids would like it.  Even though I knew what happened, I still teared up!  It's a heartwarming movie based on a true story.
  • After dinner, we watched another amazing movie based on a true story, The Blind Side, with Sandra Bullock in the starring role as a wealthy southern mother who takes in a poor, homeless, rather large black boy.  It was just as wonderful as all the reviews said - we all loved every minute of it.  If you haven't seen this inspiring movie yet, you should.
So, that was our relaxing weekend.  Have you seen any good movies lately?

Friday, September 10, 2010

How Do You Relax?

Can we talk frankly here?  I have a serious problem.  I don't know how to relax.  That probably sounds odd coming from someone with CFS, but that's part of the problem.  My motto in my younger days was "Work hard and play hard."  I worked hard and accomplished a lot, then rewarded myself by partying hard, too.  Even after our kids were born, and we eased up on the party life a bit, I still loved to cut loose.  My favorite thing to do in my down time was outdoor activities - taking a long hike, backpacking, canoeing - good, hard physical exertion out in nature that left me feeling relaxed and at peace.

So, I'm sure you understand where I'm going with this.  I can no longer go out drinking with my friends or stay up late laughing or go outdoors and hike for miles.  But, I think even more importantly, I spend so much time resting (which is not necessarily the same as relaxing) that I feel guilty if I'm not productive the rest of the time.  I must get at least 9 hours of sleep a night and take an afternoon nap.  Plus, by evening, I'm usually wiped out and not good for much.  So, I feel like I have to make the most of my limited "up" time.

Also, just the basic maintenance activities often take up all my energy for the day - laundry, dishes, grocery shopping, cooking, e-mails, writing...not to mention the 4-page long to-do list taunting me with necessary but time-consuming tasks like straightening out health insurance snafus (a full-time job at times), filling out forms, refilling medications, paying bills, etc.

The bottom line is that I almost never take time out of my day (or week) to do something fun for myself.  I'm naturally a Type A kind of person, but now my energy and time are just so limited.  On weekends, my husband can read his book for hours or sit in his recliner and watch golf, but I feel guilty if I do stuff like that (not that I'd want to watch golf...), like I'm wasting my limited productive hours.  The only time I take it easy is if I'm crashed....and even then, if I'm only mildly crashed, I still have my laptop on the couch so I can try to get some easier stuff done.

The thing is that I know intellectually that this isn't good, that it leads to my feeling overwhelmed and eventually crashing, but it's just so hard in the moment to stop getting things done while I still have energy left.  So, here I am this evening, totally exhausted with a sore throat creeping in, and feeling very discouraged.

Can you help me?  How do you set aside time with your very limited energy to just have fun?

OK, I'm putting down the laptop and picking up my book....I promise!

CFS In the News Again!

Saw a couple of interesting articles on CFS in the mainstream news this week - a good sign that word is beginning to spread to the public and the broad medical community that CFS is a serious illness that deserves attention!
So, good news coverage - finally!  We deserve some attention after all these years of being ignored.

It's been a busy week here - we're all still trying to adjust to the early mornings and hectic evenings of the new school year.  I'm doing OK, a bit better than last week.  Looking forward to the weekend!

Wednesday, September 08, 2010

Just What We Need!!

Woohoo!  Here's a very exciting development in the CFS/retrovirus research, as reported today in the Health Blog of the Wall Street Journal:

At the first-ever international workshop on XMRV, being hosted this week at NIH (National Institute of Health in the US), NIH Director announced a new study being undertaken, involving three different government agencies, top virologists, and 100 CFS patients (plus 100 healthy controls) to work together to get answers to the controversies surrounding CFS and XMRV and other retroviruses.

This is so exciting and just what we need:  high-profile, government-funded research with top-notch scientists!!  It seems we really have reached a turning point for CFS!  Have a glass of grape juice tonight to celebrate!!

Monday, September 06, 2010

Movie Monday 9/6

Happy Labor Day!!  We have celebrated the holiday weekend by not doing much of anything!  Ken did some yard work (in between reading breaks), I cooked a bit and worked on setting up my new computer (still working on it!), but mostly we both read a lot and took it easy...and watched movies!  With school starting last week, we have less time for movies, but the long weekend helped us fit in quite a few:
  • Craig and I were on our own Friday evening and both totally wiped out, so we ate dinner in the family room and watched Ice Age 3: Dawn of the Dinosaurs.  It wasn't bad but definitely not as good as the first two (they never are, are they?).  Besides the obvious problem that dinosaurs did not exist during the ice age, it just wasn't quite as clever or funny as the original.  Entertaining enough for our purposes, though (we were pretty much zombies anyway).
  • Ken and I watched Next, a sci fi thriller starring Nicholas Cage.  It didn't get spectacular reviews, but I like Cage and I liked the premise, so we gave it a try.  Cage plays a small-time Vegas magician who has a real magic-like ability: he can see into the future.  It's limited, though: he can only see what affects him and only about 2 minutes into the future.  Still, he has somehow attracted the attention of the FBI who are desperate to find some terrorists with a nuclear bomb before disaster strikes.  It was a good action movie, fast-paced and with an interesting twist.  Jamie missed this one, but I know he'd love it.
  • Ken and I watched Julie & Julia.  I had originally borrowed this from the library while he was out of town and never had a chance to watch it, but I think he's glad I waited.  We both enjoyed it very much.  Interestingly, I actually liked the movie better than the book, which is unusual. (see my book review here).  The expanded scenes of Julia Child (depicted by Meryl Streep) were absolutely wonderful, and the movie version of Julie Powell, the author, sanded down all her rough, irritating edges and made her cute and perky (depicted by Amy Adams).
  • Ken and I also watched Ghost Writer which was an excellent political thriller.  Ewan McGregor plays a UK writer hired to help an ex-British Prime Minister, played by Pierce Brosnan, write his memoir.  The hitch?  McGregor's predecessor died in a suspicious accident.  Just after the writer is whisked away to a secluded mansion in the US to work on the memoir with his subject, a news story breaks, accusing the ex-Prime Minister of war crimes.  As the writer delves into the half-finished book, he begins to discover that things may not be as they seem and his own life may be in danger.  Good suspenseful film with an intricate plot.
Have you seen any good movies lately? 

Enjoy the last bit of the holiday weekend - we're meeting some good friends for dinner (i.e. no cooking or dishes!).

Saturday, September 04, 2010

Quote It Saturday 9/4

Soooo glad it's Saturday!!  Although I enjoyed some quiet solitude this week with the kids back in school, I was pretty badly crashed for most of it (all from a bit too much weeding).  I started to feel better on Thursday, but that's when things got hectic again!  Had to pick up the house for our cleaning service and run errands (that I hadn't gotten to earlier in the week).  Yesterday, the boys were off from school.  Jamie and I were both exhausted, but we had to drive to New Jersey for our Lyme doctor's appointments.  That totally did me in!  I didn't get my nap until 3:30 pm and by then, I was a wreck. 

Jamie left for a weekend at the beach with his two best friends, I picked Craig up from his friend's house, and Ken was out golfing.  Craig and I holed up in the family room with Stouffer's lasagna (lactose be damned) and a DVD.  I spent the entire evening on the couch and am doing a bit better this morning.  The horrible heat we had all week finally broke, and it's beautiful out today!

So, for Quote It Saturday, I wanted to share another quote from our own Toni Bernhard's wonderful book, How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers.  This is actually a quote of a quote that Toni included in her book, in a chapter about letting go:

If you let go a little, you will have a little peace.  If you let go a lot, you will have a lot of peace.  If you let go completely, you will have complete peace and freedom.  Your struggles with the world will have come to an end.

          - A Still Forest Pool by Ajahn Chah, a Thai Forest Monk

Letting go is something I could always use help with, as someone who was formerly used to always being in control.  Of course, CFS teaches us a lot about letting go, as we often have no control over our own bodies, but I still need plenty of help letting go emotionally.

This weekend, there is a second type of letting go that is on my mind:  parents letting kids grow up and go out on their own.  It was very difficult for Ken and I to let Jamie go on this weekend away with his friends.  I'm not sure he's ever managed two sleep-over nights in a row before, and I'm sure the kids will be very active down at the beach this weekend.  Jamie's energy and stamina have been low lately because of his Lyme treatment, and he was already feeling run-down yesterday from going to his first soccer practice Thursday evening. 

Despite all this, though, we let him go because it was so important to him.  I think all parents struggle with letting go and with giving up control over their kids, but when your child has a chronic illness, it's even harder.  I feel strongly, though, that my kids have to live their lives.  Although I want to protect them from doing too much and crashing, I know that sometimes they just have to go all out and pay the consequences...and I know they feel it's worth it.  Also, I am very grateful to my wonderful friends (mothers of Jamie's two best friends) who give my kids the opportunities to do things that I can't manage - they take him along on activity-filled days at the beach, snowboarding, and amusement parks.  I'm glad they can experience these things, in spite of our limitations.

So, I am letting go.  I'm hoping Jamie is having a great time with his friends, and I'm hoping he won't crash for too long afterward (they have Monday off, too, so he'll have a day to recover).  Craig is having two friends sleep over tonight - more letting go!  And I plan to take it easy this weekend and recover myself.

Hope you're enjoying your weekend!

P.S. Toni's book was released this week - you can read my review at my book blog.)
P.P.S.  If you like reading as much as I do, you might enjoy these two shows that aired on NPR yesterday, featuring two hot authors.)