Wednesday, December 29, 2010


I love singing that song when we're out here visiting my father-in-law in Oklahoma!

We had a tough time getting here, but we're doing OK now.  We left home the day after that huge storm hit the northeast.  All the flights out of Philadelphia had been cancelled the day before we left, so the Philly airport was crazy!  Plus, we still had 50 mph winds, so many flights, including ours, were delayed.  We spent 10 hours in airports and airplanes Monday and finally got to the house about 1 am (2 am our time!).  A very long day.

As expected, we suffered some fall-out from that long day.  Poor Jamie was horribly crashed on Tuesday - stayed in bed and read all day.  Jamie brought 4 books with him and has finished all of them already!  I managed OK through the day but then had a killer headache at night - possibly the worst of my life, the kind that makes you feel sick all over.

Today was much better.  We're all rested and enjoying being here.  Today we went to Pop's, a very cool shop on historic Route 66 that sells...pop!  All flavors from all over the world.  We picked out a mixed 6-pack of some great flavors and had lunch there.  We finally had the energy to play some games tonight, and even got my FIL to play with us for the first time in years!  The whole family played Skip-Bo, then Jamie smeared me in dominoes.  Ken, his Dad, and the boys are now enjoying watching the Oklahoma State Cowboys football game.

It's always nice and quiet and relaxing here, so that's good.  I'm enjoying the break and reading a lot.  Hope you're all enjoying this quiet week, too!

Sunday, December 26, 2010

Christmas Joys

I hope everyone had a wonderful Christmas!

We enjoyed a nice Christmas at home.  Jamie and I weren't feeling good for some of it, but that's the nice thing about our quiet day at home - we could rest when we needed to.

I was really hoping to make it to Christmas Eve church service, but I was still badly crashed by that afternoon.  So, we gave up on that plan (with much relief), had our dinner, then snuggled into the family room to watch It's A Wonderful Life together!  It's the first time Craig had seen it, and Jamie hadn't seen it in about 6 years, so it was really fun to share one of my favorites with the kids.  Of course, Craig made fun of me when I cried at the end (as I always do!), but Jamie said, "I can see why this movie could make you cry."  I love it!

Strange, isn't it?  Each man's life touches so many other lives.  When he isn't around, it leaves an awful hole, doesn't it?

...You see, George, you really had a wonderful life!

We did get up off the couch to briefly make an appearance at our neighbor's open house on Christmas Eve...and we even changed out of our sweats (briefly!).  I probably shouldn't have gone, but they are such wonderful people and are so kind to us.  We only stayed for a short while, then came back home to read our traditional Christmas books around the tree before bed.

We all managed Christmas morning OK and enjoyed opening our presents and having a big breakfast.  We pulled off some great surprises, including a ping-pong table for the boys and a new TV for their games in the basement (to replace the 80's-era one they were using!).  If you're interested in reading about the books we got as gifts, check out my book blog.  By afternoon, Jamie and I were both feeling crummy, so we spent much of the day reading and watching movies.

Jamie barely made it to the dinner table, then collapsed back onto the couch, in the dark family room, curled up in a ball.  No matter how many times I see it, it still breaks my heart when he feels so bad.  He went up to bed at 7 pm, but he's feeling much better today, thank goodness, and is having fun with his friends and his brother and their new toys!

I hope all of you had a merry Christmas, too!

Friday, December 24, 2010

Happy Holidays!!

Merry Christmas and Happy New Year to you all!

Things are pretty much done around here (finally!).  I'm pretty badly crashed from pushing myself so much these past few weeks but am resting today.  I made it to our cookie decorating/Grinch watching party last night with our closest friends, and I am hoping to make it to the candle-light Christmas Eve service at our local Unitarian church tonight.  Then, nothing to do but relax and play for a few days before we head to Oklahoma to visit my father-in-law.

I hope you're able to enjoy some of the blessings of the season this weekend, with your family and friends.

Here's to a happy and HEALTHY new year for us all!!

Wednesday, December 22, 2010

Who Do You Tell and How Much?

How do you know when and how (and if) to tell casual acquaintances about your illness?  I know some people like to keep their illness to themselves and some don't even tell those close to them.  My personal approach has always been quite open - I find it's easier on me if the people in my life understand - but I still wonder sometimes when and if I should tell those I don't know as well.

This is on my mind because today I told the mom of some of Craig's friends about my illness - and about my sons' illnesses as well.  I didn't really intend to, I just sort of blurted it out and am wondering if that was OK.  I've known this mom for many years but we don't know each other well (in fact I had to look up her name when I got back home!).  Her two sons played on the same t-ball team as Craig when they were little, and the three of them are now in the same middle school together and all play soccer together, too.  Today was the first time Craig has been to their house, so when I dropped him off, I went inside to say hello and thank you, just to be polite. 

She's really nice, and we got chatting about school, the kids, our homes, etc.  She said something about how tiring and hectic the holidays can be and that's when I just blurted out that I have a chronic illness so this time of year is extra-challenging for me.  A few minutes later, we were talking about the kids' teachers, and I told her that Jamie and Craig also have the same illness and that the teachers have been great about that this year.

That led to the inevitable question, "Do you mind if I ask what illness you have?" and my standard reply, "It's an immune system disorder with a pretty silly name.  It's called Chronic Fatigue Syndrome in the US."  She asked if it was genetic, and I told her there is a genetic component and mentioned that Craig is doing so well thanks to medication.  She was very kind and seemed interested, so I think that was OK.

To be honest, it's a bit of a relief to me that she knows now.  I'm sure the other parents wonder why I never volunteer at school and why I sort of keep to myself on the soccer sidelines.  You can't just randomly walk up to people who don't know you at all and announce your illness, though sometimes I wish it were more visible to others.  At one soccer game this fall, it was pouring out - really raining hard - and one of the parents had brought a canopy for the parents to stand under.  They invited Ken and I under, but it was standing-room only, so we politely said thank you and stayed in our side-by-side chairs, huddled under a golf umbrella.  They must have thought that was strange, but there's no way I could have stood to watch the game...and no way I could have explained to a whole crowd in the middle of a downpour, either!

So, maybe this is good that at least one of the moms knows.  I don't want pity, but it's nice when people understand my limitations and know that I'm not just anti-social!  It's a tough call to make.  What's your approach?

WPI Refutes Latest Accusations of Contamination in XMRV Studies

I haven't had the time or energy to post about this, but I imagine you've seen at least one of the many articles published this week and last claiming that there is no XMRV in ME/CFS and that the previous positive studies that found XMRV were due to contaminated samples.  This new proclamation is coming from the UK but has been reprinted by many major news outlets.

I haven't been paying much attention to it because I knew it was all BS.  As I reported this fall from the NJ CFS Conference, Dr. Mikovitz addressed the issue of potential contamination in her presentation, including detailed explanations of why both her findings and those of the FDA/NIH study could not possibly be due to contamination.

Since this new accusation is getting so much press, I just wanted to post the refutations.  First, here's an excellent explanation written by a fellow blogger at CFS Chronicles - I absolutely love her coining of the term "retrocrapologists"!!

And here is Dr. Mikovitz own refutation, released from WPI yesterday:

"Statement from the Whittemore Peterson Institute regarding
Retrovirology December 20,2010by Whittemore Peterson
Institute on Tuesday, 21 December 2010 at 04:13

The Lombardi et al. and Lo et al. studies were done using
four different methods of detection. They were not simply
PCR experiments, as were the studies by McClure et al. and
others who have recently reported their difficulties with
contamination. Experienced researchers such as Mikovits,
Lombardi, Lo and their collaborators understand the
limitations of PCR technology, especially the possibility
of sample contamination. As a result, we and Lo et al.
conducted rigorous studies to prevent and rule out any
possibility that the results reported were from contamination.
In addition to the use of PCR methodology, the Lombardi team
used two other scientific techniques to determine whether,
in fact, we had found new retroviruses in human blood
samples. We identified a human antibody response to a gamma
retroviral infection and we demonstrated that live gamma
retrovirus isolated from human blood could infect human
cells in culture. These scientific findings cannot be
explained by contamination with mouse cells, mouse DNA or
XMRV-related virus-contaminated human tumor cells. No mouse
cell lines and none of the human cell lines reported today
by Hue et al. to contain XMRV were ever cultured in the
WPI lab where our PCR experiments were performed. Humans
cannot make antibodies to viruses related to murine leukemia
viruses unless they have been exposed to virus proteins.
Therefore, recent publications regarding PCR contamination
do not change the conclusions of the Lombardi et al. and Lo
et al. studies that concluded that patients with ME/CFS are
infected with human gammaretroviruses. We have never claimed
that CFS was caused by XMRV, only that CFS patients possess
antibodies to XMRV related proteins and harbor infectious
XMRV, which integrates into human chromosomes and thus is a
human infection of as yet unknown pathogenic potential.

"The coauthors stand by the conclusions of Lombardi et al.
Nothing that has been published to date refutes our data."

Judy A. Mikovits"

Sue again...I hope that helps put these ridiculous accusations to rest (though of course, the controversy will continue...)

Tuesday, December 21, 2010

It's the Most Exhausting Time of the Year!

Yes, yes, it's also a wonderful time of year, but I'm pretty worn out at the moment.

We enjoyed a very nice weekend with my family in Connecticut.  I always love spending time with my niece and nephew (and everyone else, too!), we ate delicious meals (thanks, Mom!), and there wasn't a single emergency or emotional break-down.  So, all in all, a fun weekend.  We spent a lot of time watching videos from our recent family vacation in Jamaica (along with the DVD I spent all last week preparing) and reliving good times together.  Amazingly, we had no trouble with traffic on the way there or home, a first for the New Jersey Turnpike!

Even though it was a good weekend, of course it was tiring for me.  I didn't DO anything physically, but I don't sleep well away from home, and it's tough living with ten other people, even just for a couple of days, when you have CFS.

Back home, I just spent two days in a row shopping, and you know what that means.  Yesterday, I made my one and only trip to the mall.  I went to the smaller mall in our area, so it wasn't crowded or too large to get around, but I was already worn out.  I just needed a couple of items for Craig that I couldn't get online.  I tried hard to take it easy - walked very slowly, stopped to sit on benches, etc. - but it was still the mall.  I used to get worn out going to the mall BEFORE I had CFS!

Today was Craig's last day of school before winter break.  Jamie and I drove to see our Lyme doctor in NJ, then stopped at Target across the street to stock up on necessities and to give Jamie a chance to finish his shopping.  It wasn't too bad - Jamie now drives all the way there and back (!) and he pushed the cart - but it was still another day out and about and on my feet.

I still have a lot to do this week, but it should be easier from here on out.  Those were the two big days.  I still need to wrap presents, finish Christmas cards (I did most of them in the car this weekend!), mail a bunch of stuff, and get groceries (though maybe Ken can do that).  Our dear friends are taking a turn hosting our annual cookie-Grinch party, so that will help.  We've upheld this tradition with our two families for almost 20 years now.  For awhile, before CFS, it turned into a big party with other families invited, but we've held onto one of our favorite traditions by scaling it way back to just the two of us...and I buy my cookie dough now! 

How are you holding up so far this holiday season?  What are your strategies for getting through all this extra activity?  I hope you're finding time to enjoy the season - I plan to do that this week, as things slow down and we have a few quiet days alone, just the four of us.

Monday, December 20, 2010

Movie Monday: Blake Edwards Dies at 88

No time for movies last week with all our holiday stuff going on, but I just read that Blake Edwards, the famous Hollywood writer/director and husband to Julie Andrews, died last week from pneumonia at age 88.  Did you know he had CFS?  He appeared in the CFS documentary I Remember Me (an older film but highly recommended).

And guess what?  The Hollywood Reporter's obituary of Blake Edwards actually mentions his CFS diagnosis!  Although it wasn't a secret, he didn't seem to mention it very often - I'm guessing he wanted people to focus on his accomplishments, not his illness - so I was surprised to see it included in this article.

He was a talented man and will be missed.  Favorite Blake Edwards' movies, anyone??  Of course, the Pink Panther movies were classics, but I didn't realize he also directed Breakfast at Tiffany's, which I loved.

Wednesday, December 15, 2010

The Votes Are In!

The FDA voted yesterday to ban CFS patients from giving blood until they have more information on infectious agents and CFS!  It's about time.

A kind reader (Thank you, Luke!) just clarified that today's action was a recommendation from an advisory committee to the FDA, recommending they ban blood from ME/CFS patients.  The FDA hasn't actually taken action yet...

Sorry for the mistake - I'm so busy with holiday preparations that I must not have read the article carefully enough.

Here's another article from Bloomberg BusinessWeek on the recommendation.

Tuesday, December 14, 2010

Latest News on XMRV and Blood

I've been really overwhelmed with holiday stuff lately and am way behind on my blog postings, so you may have heard this news already, but it's big news for all of us so I thought I'd pass it along:

Although many countries, including the UK and Australia, have banned people with ME/CFS from donating blood in the wake of the XMRV research findings, the U.S. government has been dragging its feet.  Last week, the American Red Cross decided to stop waiting for government action and announced it would no longer accept blood from donors diagnosed with ME/CFS.

And, today and tomorrow, the FDA Blood Products Advisory Committee is meeting (FINALLY!) to discuss XMRV and related viruses and the potential dangers they pose in the blood supply.  Let's hope they make the right decision.

Time to make a nice, soft dinner (Craig got his braces put on today).

Monday, December 13, 2010

Movie Monday 12/13

Whew, another crazy busy holiday week.  I just remembered I hadn't done Movie Monday yet!

We did make time for some DVDs this weekend (you'll see I browsed the W section at the library), and Jamie was home sick today, so he and I caught a couple of movies on TV.  And, are you ready for this?  (drumroll, please)...We went to see a movie in the theater!  Can you believe it?  We manage that about once a year, so it's a big deal.  So, lots to report today:
  • We saw Harry Potter and the Deathly Hallows in the theater on Saturday.  Ken, Jamie, and I had all read the book (but a while ago).  All four of us loved the movie - it was excellent, as they all have been.  This is the movie series we leave the house for!  And a side benefit of waiting to see it until it's been out a month is that we pretty much had a private screening with about 10 other people in the theater.  Now we have to wait for next summer for the final movie.  I'd like to re-read the book before then.
  • Ken and I watched Winter Passing on DVD Friday night.  About a half hour into it, Ken pronounced it "quirky"!  It was a little odd, but we both enjoyed it.  Zooey Deschanel (who is so adorable) plays Reese, a struggling actress with famous writer parents who heads home to Michigan to retrieve some love letters from her parents that her mother left to her in her will.  A publisher has made her a big offer for the letters.  When Reese arrives home, however, she finds her father in a sorry state, being cared for by two strangers, Shelly, a writing student of his, and Corbit, an odd sort of handyman-bodyguard (played by Will Ferrell).  Secrets come to light slowly as we learn the backstory of Reese's parents and her unbringing.  It was very good.
  • On Saturday night, we watched What Just Happened, starring Robert DeNiro as a Hollywood producer whose life is falling apart, both personally and professionally.  It's filled with stars and will appeal most to those who enjoy Hollywood insider stories.  The box proclaimed review blurbs like, "Outright hilarious!" and "Priceless laugh-out-loud lines!"  We didn't think it was all that funny, though it did have its moments that were mildly amusing (like the Bruce Willis scene).  
  • Today, Jamie felt awful and drowned his sorrows in back-to-back movies on TV.  I had my laptop out but watched with him.  First we saw Arlington Road, a good thriller with an excellent cast.  Jeff Bridges plays a college professor teaching a class on terrorism whose FBI wife was killed by an extremist group.  He begins to suspect that his new neighbors, played by Tim Robbins and Joan Cusack, aren't who they appear to be and starts to investigate their backgrounds.  His new girlfriend and his wife's old FBI colleague think he's being paranoid because of what happened to his wife.  So, the question he paranoid or is something sinister really going on?  It's a good suspense flick, though we didn't like the ending.
  • During lunch, we watched Instinct, an interesting movie about an anthropologist, played by Anthony Hopkins (who always plays creepy guys!), who spent years living with gorillas in Rwanda and is now in prison after murdering two men in Africa.  Cuba Gooding, Jr. plays the therapist assigned to conduct a psychological evaluation of the prisoner, who won't speak at all at first.  As the movie progresses, the two men get to know each other better and both affect the other prisoners, and we gradually learn more about what really happened in Africa.  It was pretty good.
Have you seen any good movies lately?

Thursday, December 09, 2010

'Tis the Season for Giving!

I've been soooo busy lately, bouncing back and forth between activity and crashes.  I probably should have written this post about three weeks ago, but maybe there are some of you out there like me who haven't finished your holiday shopping yet.

I just wanted to remind you that there is a simple way to earn money for ME/CFS research while shopping online through two excellent websites.

iGive includes thousands of online stores, and it is also a search engine.  First, register with iGive and pick a charity - it's quick and free.  Through tomorrow, they're running a special promotion.  Use this link to sign up, and they'll donate an extra $1 to your charity with your first search (you don't have to buy anything or even visit a store - just use their search engine once).

When you want to shop, go to, just find the store you want on their page (you can click on the first letter, type into the search box, or browse through various categories along the left side), then click through to the store.  A pop-up box will indicate what percentage the store will donate to your charity of choice.  As a cool bonus, the pop-up box also tells you about any special sales or coupon codes you can use at the store.  Then, just shop normally and the store will donate a percentage of your purchase to your charity.

I've used iGive for about 5 years now, with the CFIDS Association as my designated charity.  I believe the Whittemore Peterson Institute (WPI) is there now, too.

The other website I sometimes use is GoodShop.  It works similarly, though you don't have to register.  Each time you go to the site, type in the store you want and the charity you want to donate to.  On this one, I usually designate WPI.

So, do some good with your shopping this season!  Besides, online shopping is perfect for all of us with ME/CFS.  I tried actually going to a store on Tuesday, and I'm still trying to recover!

One last note.  If you have any money left over for charitable giving this year, consider making one last donation to WPI.  I heard recently that they are ready to start clinical trials for anti-retro-viral drugs for XMRV in ME/CFS patients but that they don't have the money to start the studies yet.  Besides, if you make your donation before December 31, you'll have another tax deduction for 2010!  I'm going over there now to make mine.  I really want to see those clinical trials start!

Hope you're managing this hectic season a little better than I am!

Monday, December 06, 2010

Movie Monday 12/6

Happy Monday!  Wow, we had a busy weekend.  It was supposed to be even busier, but we had to ditch a few activities.  All three of us were stretched to our limits, but we had a lot of fun.

On Saturday, we made our annual trek to the tree farm to cut down a Christmas tree.  It was a much happier occasion this year - last year, Jamie was too sick to come along (first time one of us ever missed out) - so we were in high spirits to all be out there together again.  On our way there, we stopped by a local Unitarian church for their annual pancake breakfast, along with the two families who are our closest friends.  It was great to see everyone, and I especially enjoyed the social interaction after a week of being mostly stuck at home.

We had planned (I know, what were we thinking??) of going out to dinner Saturday night, then to see the latest Harry Potter movie.  I was worn out from the tree farm but thought I could manage it, but Jamie was feeling really exhausted.  He hasn't been sleeping well the last few nights, and it's taking a toll.  So, instead, Ken and Craig went to the grocery store for frozen lasagna and to the library for DVDs.  That's one thing CFS has taught us all, to stay flexible and roll with the punches.

On Sunday, we put the tree up and decorated it, which turned out to be an all-day project, but it's one of our favorite parts of the holiday season.  So, now the house is a total mess, but there's a beautiful Christmas tree in the middle of the chaos!

So, here are the movies we watched Saturday night:
  • With the kids, we watched Ocean's Twelve, just the kind of light-hearted fun we needed!  We just watched Ocean's Eleven a few weeks ago, and the kids were eager to see the sequel.  We all enjoyed the star-studded movie with its clever, unexpected plot twists.
  • Ken and I watched a holiday-themed movie, Midnight Clear.  It's one of those movies where a bunch of seemingly disparate story lines eventually come together.  It's about several different people whose lives are all at a low point, for various reasons, who inadvertently touch each others' lives and make a difference...and it all takes place on Christmas Eve.  It's a small, independent film that won a bunch of awards at various film festivals.  We both really enjoyed it.  There's not a lot of action; it's a somewhat quiet, gentle movie.  Things look pretty grim for some of these people during the movie, but it has an uplifting, hopeful tone to it by the end. 
Another very good, though lighter, holiday movie is The Holiday starring Cameron Diaz and Kate Winslet, which we watched last year.  I also love The Family Stone, which made me both laugh and cry.   And, of course, I have to watch It's a Wonderful Life at least once during the season and cry my eyes out at the end!

Have you seen any good movies lately?  Do you have any favorite holiday-themed movies?

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

Friday, December 03, 2010

Laura Hillenbrand in Elle

Have you completely O.D.'ed on stories of Laura Hillenbrand yet?  Every time I think I know all there is to know about her, another outstanding article comes out.

The latest article was published in Elle, and it provides an in-depth look at Laura's life and her writing, with a great amount of detail provided about how CFS has affected her and what her daily life is like.  The more I learn about her, the more I admire her and her amazing attitude and persistence.

I hope you find this latest article as inspiring as I did (thanks to Denise and Martine for sending me the link).

I was feeling a bit better this morning and hitting the usual afternoon slump now, so I'm hoping to be up to getting our tree tomorrow, as planned.  Hope you have a good weekend!

Thursday, December 02, 2010

ME/CFS Worldwide Patient Alliance

I'm still pretty badly crashed.  I suspect now that it is probably a herx reaction to my Lyme treatment because I cut my antibiotic dose in half for 5 days last week, to reduce the sun sensitivity while I was on vacation, and went back to the full dose on Saturday.  I'm very achy and have a sore throat, so I'm trying to rest and take it easy...therefore, a quick post today...

Just wanted to tell you about a brand-new patient organization, the ME/CFS Worldwide Patient Alliance. MCWPA is a grassroots effort just started in 2010 in order to give patents a voice and help to increase visibility of our illness.  Here's their website, and more information about the organization. They're working on ads to help raise awareness of ME/CFS.

I've signed up to volunteer when the media is looking for someone to interview, and MCWPA has posted my profile on their Personal Accounts page.

If you are interested in either submitting a profile or being available for interviews, contact Tina at

Hope you're doing well this week.

Tuesday, November 30, 2010

Movie Tuesday 11/30

Oops...I totally forgot Movie Monday yesterday.  I don't know how I could have overlooked it...maybe something to do with the 400 e-mails and all the urgent tasks waiting for me after vacation.

Re-entry into the real world has been tough, as always.  I couldn't get to sleep last night because my brain was spinning with to-do lists, things to remember, drafts of things I need to write, etc.  So, as a result, I felt pretty crappy today and spent the day on the couch (though still working all day on the laptop - a mistake, I know).  I just cancelled out on dinner and book group tonight with my two closest friends.  I know it was the right decision because I feel more relief than disappointment (even though I love those evenings out!).  So, I'm back here on our saggy couch, having shared take-out pizza with Ken and the boys, still very achy and knowing I made the right choice.  Looking forward to watching Glee tonight (I'm a new convert) and going to bed early.

So, obviously not a lot of time for movies while on vacation last week (none in fact), but we did watch one before the trip and one this weekend:
  • While Ken was in Europe, I watched Dirty Rotten Scoundrels with Jamie and Craig, that classic silly movie starring Steve Martin and Michael Caine.  They loved it, as I knew they would!  We've been watching a lot of movies featuring scams and capers lately.
  • This weekend, Ken and I watched The Girl with the Dragon Tattoo, which I had seen before at a little independent theater with my neighbor and book group buddy.  Ken recently read the wildly popular 3-book series, so I knew he'd enjoy the movie.  Both the books and the Swedish movies are excellent, though they are quite disturbing at times, as they include some gruesome murders and brutal rape - not for everyone.  I can't imagine the Hollywood versions could be any better - but I'm sure I will see them when they come out!
Have you seen any good movies lately?

Laura Hillenbrand in the Washington Post

I know I have already posted lots of links to articles and interviews with Laura Hillenbrand, author of Seabiscuit and her new book, Unbroken.  Maybe you're getting sick of reading about her, but this new Washington Post article is just too good not to pass along.  It focuses heavily on her life with ME/CFS, describing in detail what her daily life entails and the restrictions she lives with.  It is very well-written and brought tears to my eyes.

Hurray for Laura Hillenbrand!  Not just for writing two incredible best-selling books but also for being honest about her illness and challenges and helping to bring CFS out of the closet and into the public eye.  She is an inspiration.

Thanks to Dominique for sending me this link!

Monday, November 29, 2010

ME/CFS in Newsweek!

Both XMRV and Laura Hillenbrand continue to fuel increased coverage of ME/CFS in the mainstream media - hurray!

Here's an article that appeared in Newsweek on ME/CFS and XMRV that focuses on how ignored the illness has been in past decades.  Good stuff!

Sunday, November 28, 2010

A Wonderfully Relaxing Vacation

We're back!  I am pleased to report that I managed the trip very well, felt good most days, and thoroughly enjoyed it.  I'm almost embarrassed that I was so anxious about the trip...except that I've been on other family vacations where those anxieties came true!

This trip started out just as bad as I'd feared.  That first day, traveling all day, was even worse than I'd expected.  I was still badly crashed, as I'd been for weeks.  I can normally handle getting through airports OK, but last Saturday, just the walk to our gate left me in tears (I don't normally need a cart and we were running too late to wait for one).  I had no physical stamina at all.  When we arrived in Jamaica, we had to walk a long way and wait in line to get through immigration and customs.  When we got through, my mom ran up to me and hugged me, saying, "I've been so worried about you!  Did you manage the trip OK?"  Wanting to be a good sport, I tried to say, "I'm fine, Mom," but I started crying again!  I just felt so overwhelmed and exhausted.

Fortunately, everything improved from there on out.  I ended up feeling quite good the entire time we were there.  The weather was perfect - low 80's with a nice breeze, 70's at night - and the scenery was gorgeous.  Of course, it helped that I had no responsibilities at all for 6 days!  No cooking, shopping, laundry, dishes, or schedules to keep.  I walked a lot more than I was used to, just getting from the room to meals or to the beach and back, but with no stress at all and no energy needed for the usual daily tasks of life, I managed fine.  My family was very understanding, too.

I settled into my own little routine, spending mornings on the beach on a lounge chair, going out on the snorkeling boat with my family at 11:30 am (just for the ride at first), a long nap in the afternoon, and meals with my family either at the buffet or one of the restaurants.  It probably helped that the four of us were in bed by 9 pm every single night!  In fact, I think that helped a lot.  I often woke at 7 am or earlier (that's what CFS does to Jamie, Craig, and I), but I usually stayed in bed until 8 am because I didn't want to wake the boys.  So, almost 11 hours of sleep a night, plus naps!  No wonder I felt good.

After a few days, I was feeling well enough to even be a bit more active.  My mother's wonderful husband, who was a competitive swimmer in college and is SCUBA certified, offered to basically pull me along with him while he snorkeled, so I wouldn't get tired swimming.  So, I held his hand and got to enjoy the amazing underwater sights along with my kids!  He was a really good sport about pulling along my dead weight, and on the next day, I even tried a little kicking and paddling to help out (that's me in the orange mask in the water).

Staying out of the sun (because of my Lyme meds) was a challenge, but I managed that OK, too.  Each morning, I covered myself in SPF 100 sunscreen, I wore my big sunhat everywhere plus a long-sleeved sun shirt while walking and a rash guard shirt while in the water, and I tried to stay in the shade whenever possible.  I also cut my dose in half while I was there, so I'm sure that helped, too.

I absolutely love the ocean, and it was so warm in Jamaica!  I loved sitting on the beach under the palm trees looking at the gorgeous views or floating in the warm water with my kids.  As a bonus, being in the water is great for OI (as long as it's not hot water!), so my stamina was better than normal - I was able to play Frisbee with my sons in the ocean, enjoy snorkeling, and float down the "lazy river" with my niece and nephew.  All in all, it was a wonderful week, relaxing and enjoyable.

Now, it's back to reality.  Yesterday was a flurry of grocery shopping, unpacking, laundry, cooking.  I stayed up too late last night and woke too early this morning, so I'm pretty exhausted today - almost nap time!  I've been thinking, though, of how to extend that relaxed vacation-feeling into my daily life.  I am definitely going to try going to bed earlier and also making time for something relaxing and enjoyable each day.  Wish me luck!

I hope everyone (in the US) had a nice Thanksgiving holiday!  

Friday, November 19, 2010

Laura Hillenbrand Today Show Video

Hurray!  The Today Show finally televised its interview with Laura Hillenbrand today (though there was still a lot of coverage of the royal engagement!).

The focus of the piece is on her new book, Unbroken, (as is appropriate), but they also emphasize Laura's illness and mention CFS by name!  True, the name is horrible, but interviews like this can help the public to understand how serious it really is.   You can watch the video of the interview online.

I can't wait to read her book!

Thursday, November 18, 2010

Laura Hillenbrand to Appear on Today, Take 3

Almost's the latest:

TODAY SHOW, NBC: Feature on Laura Hillenbrand and Louis Zamperini, Friday, November 19, 8:36 a.m.

I've watched for 3 days now (I usually watch some of it anyway).  Let's hope it makes it on the air tomorrow!

Fear of Fun

(aka Vacation Anxiety)

The reason I haven't been posting too much of a personal nature is because I have been completely overwhelmed with anxiety over an upcoming Family Vacation.  That is, a trip with my extended family over the holiday next week.  The last time I went on a week-long vacation with my extended family, I had the most severe relapse of my nine years with CFS, couldn't get out of bed for days, and wasn't speaking to anyone by the time I left because I was so upset by the way they all ignored how sick I was.

I was not in favor of this upcoming trip, but my mother insisted.  She says it's her retirement gift to herself.  Everyone else is so excited they can't stand it (except my husband who knows my challenges intimately).  So, on top of everything else, I also feel horribly guilty that I'm not looking forward to this trip and that I'm not feeling more grateful.  After all, my mom is treating us and my sister's family to this expensive beach resort in Jamaica - what kind of a freak wouldn't want to go, right?

Besides that horrible past experience, I have been obsessing over every aspect of the trip:
  • How will I manage the 4-hour plane trip and 90-minute shuttle bus ride?
  • What if my room is far from the restaurants, beach, etc. (that happened on yet another family trip and I barely made it to meals)?
  • How will I cope with a week on a tropical beach when I can't be in the sun for 10 minutes without getting a painful burn (and sunscreen doesn't help much)?  (due to Lyme treatment)
  • How will I cope with a week's worth of conflicts when my mom wants to eat meals hours later than I need to eat?
  • How will I manage with so many nights in a hotel room (I sleep horribly in hotels)?
  • And on and on and on...
I've still been feeling pretty bad this week, so that just adds to my worry.  Ken gets home one night and we leave first thing the next morning, so I'm also worried about getting everything ready on my own.  And, of course, there is some resentment over all that I won't be able to do that I would love to do - enjoying the sunshine, spending hours playing on the beach and in the ocean with my kids, doing all sorts of active things at the resort, even staying up late to enjoy my family's company and being able to enjoy a drink once in a while.

See what I mean?  I'm driving myself crazy, plus I feel like an ungrateful, bitter daughter.  I usually pride myself on my optimism and positive attitude, so my negative attitude over this is even more upsetting.

I'm doing just slightly better today, maybe because it's getting closer and I've gotten a lot done this week or maybe because I feel slightly better physically today.  I contacted the resort, and they said they could provide Gatorade for the boys (which was a huge worry), so that's good.  Maybe I should also call about the room location, instead of waiting until we check in.

I'm sure it will all work out OK in the end (or it won't but I'll survive it).  My kids are over the moon excited about this trip.  I just wish I could share in their happy anticipation, but I know what kinds of challenges I will face.

OK, here are some positives:
  • I will be on vacation, so that means no responsibilities for a week, a huge relief after taking care of everything by myself for the past two weeks.
  • Ken will be back with us.
  • I will have lots of time for reading (though I'm worried that's all I'll be able to do).
  • The kids will have an absolute blast.
  • No grocery shopping, no cooking, no dishes, no laundry. 
OK, so that sounds good, right?  Hmmm..maybe I should list those last four items separately...

I'm going to try to have a better attitude, really, I am.  I hope it will be better than I expect - I will probably be able to enjoy some of it, right?  Right??

ME/CFS In the News

Two interesting news items came to my attention this morning:
  • A new documentary about ME/CFS, called Invisible, is being released tomorrow in Vermont; the director/producer has CFS.  This is the first I'd heard of this one - I'm interested to see it.  I also highly recommend another award-winning CFS documentary, I Remember Me (see link below).
  • An update from the Wall Street Journal's Health Blog on the new, large-scale study to test CFS patients for XMRV.  What's new and exciting about this study is that it is a cooperative study between WPI and FDA/NIH (who have both previously found XMRV and related viruses) and the CDC (who has not).  They are agreeing on using the same selection criteria, the same handling and storage requirements, and the same testing methods.  Hurray! 
The Laura Hillenbrand story was AGAIN pre-empted from the Today Show yesterday for the second day in a row, in order to make room for extended coverage of the royal engagement.  No offense to my friends in the UK, but enough already!   No official word on when it will run, but I'm watching again today!

Tuesday, November 16, 2010

Laura Hillenbrand to Appear on Today

According to the CFIDS Association:

"The Today Show" segment featuring an at-home interview with author Laura Hillenbrand was bumped from today's show and is now scheduled to air tomorrow (Wednesday). Laura's new book, "Unbroken," is out in stores today!"

Laura's in-person interviews are limited because of ME/CFS, so this will be a unique opportunity to see and hear her.  

So, tune in tomorrow!  I plan to...

Monday, November 15, 2010

Movie Monday 11/15

Monday, Monday.  I made it through the weekend without Ken - our Saturday get-together helped a lot!  I'm tired but doing a bit better than last week.  That seems like both good news and bad news to me - I'm certainly glad to be doing better, but now I'm wondering if the Immunovir was making me worse last week.  I'll just have to wait and see.  I'll restart my trial of it after I feel like I'm back to my "normal" baseline. 

More good news: Craig's knee injury was not serious - the orthopedic specialist he saw this morning just wants him to do some physical therapy.  He thinks a contributing factor is that Craig's joints are very loose and flexible (it's very common for kids with CFS to have loose or hypermobile joints).  So, four weeks of PT should do the trick.

The boys and I did enjoy some movies last week:
  • Friday night, the three of us watched Die Another Day, a James Bond flick.  It was classic Bond - lots of action, cool technology, and the good guys won in the end.
  • Sunday night, we watched Ocean's Eleven.  I've been wanting to share this one with them for a while, and they loved it!  I told them it was kind of like a cross between The Sting and The Italian Job.  They enjoyed the star-studded cast and the cleverness of the plot.  Jamie was excited to hear there are also Ocean's Twelve and Thirteen!
  • I watched a couple of movies myself that I knew Ken didn't want to see (split up over the course of several evenings!).  The first was When Did You Last See Your Father? starring Colin Firth.  He plays a man whose father is dying (that's why Ken didn't want to see it).  Much of the movie is flashbacks to his childhood and teen years, showing why he has such conflicting feelings toward his father.  It's a melancholy, thoughtful movie, exploring the complexities of the relationship between a father and son.  I really liked it.
  • I also watched Personal Velocity (which Ken would have proclaimed "quirky!").  It's three mostly unlinked stories of different women, each with her own problems and flaws.  It's got a very "real" quality to it, as we watch each woman trying to find her way in the world and find her own brand of happiness.  Ken would have found it depressing, I think, but there were elements of hope in each story.  It will definitely appeal more to women - not a lot of action but lots of emotions.
Have you seen any good movies lately?

Sunday, November 14, 2010

Party for Chronically Ill Kids

That sounds like an oxymoron, doesn't it?  Or at the very least, like a really boring and possibly depressing event.  But all of those perceptions are wrong.

Our local CFS parents group got our families together again yesterday for our second gathering, and everyone had a great time!  One family hosted us for an informal potluck dinner; there were five families there, each with one or two kids/teens with CFS (I'm the only ill adult in the group).  We're all getting to know each other pretty well by now, so it was a lot of fun!

I was mentioning our group recently to a mom whose teen daughter has CFS, and she said she didn't really want her daughter interacting with other teens with CFS because she thought it would cause her to focus too much on her illness and might be depressing.  Nothing could be further from the truth!

Hanging out with other kids who have CFS is so freeing - they all became instant friends.  I don't think they talk about their illnesses or challenges at all when they're together - they talk and laugh and play games.  Best of all, they feel completely comfortable with each other.  They don't have to feel self-conscious or worry what the others will think if they have to sit down during Frisbee or lie down while playing video games.  There was dairy-free, gluten-free food available.  They understood why Jamie was constantly drinking Gatorade and why many of them attend school only part-time or not at all.  No explanations required.

For some of the kids who are usually isolated at home, this was the only time they've played outside in years and probably the only party they've been to in a long time, too.  The kids threw the Frisbee in the backyard and played video games in the basement.  One mom brought a bunch of flexible glow sticks, and after dark, the kids had a "glow stick war" in the basement.  True, some teens were lying down while they threw their glow sticks at each other, but the sounds of screams and laughter from the basement brought  a lot of smiles to parents' faces. 

And the connections formed aren't just fleeting.  After our first gathering in August, the kids all exchanged e-mails with each other.  In between our get-togethers, they're texting each other and interacting on Facebook.  They've formed solid relationships with each other and now know that they can rely on each other, that there is always someone available who understands.

Even though I'm the only adult in the group with CFS, I feel similarly comfortable with this group - they all understand why I can't stand much, why I'm constantly drinking water, why by 8 pm, I was exhausted.

I know I've said this here before, but if you have a chance to meet other people with CFS, you should try to do it, even if the exertion might result in a few days of rest afterward.  It's just so liberating to be with other people who instantly "get it," who require no explanation.  Just as all of you that I've met online have enriched my life and made me feel less isolated, meeting all these other families dealing with CFS has made all of us feel less alone.  Our focus has been on social events (which has been great!), but along the way, we're also providing support for each other.  It takes a village, right?

On the way home last night, Jamie said, "I wish we could do that every week!"

Friday, November 12, 2010

Trying New Treatments and Wondering...

I'm having a really bad week.  I'm feeling so, so, so terrible - sore throat, severe aches, and total exhaustion.  And I am really missing Ken - both his help and his company.  As usual, I'm trying to figure out WHY I feel so terrible.  The problem is that I've tried too many new things in this past month.  I'm usually more careful to try one thing at a time and give it some time.  So, here's a rundown of what I've tried and what I think its effects have been:

On October 16, I started taking 1000 mg of Vitamin D each day.  Unless you've been living in a cave (in which case you really need vitamin D!), you've probably heard at least a small percentage of the studies on the miraculous vitamin D.  It seems that every week, there's a new study out touting its benefits.  Much of the research has focused on its beneficial effects on the immune system and the link between vitamin D deficiency and all sorts of immune disorders.  All of the studies say you can't get enough vitamin D from food or sunshine alone (and I can't be in the sun at all right now because of my Lyme meds).  My recent lab work showed my vitamin D levels right at the lower edge of normal, so I decided to try it again.  I tried it once before and it upset my stomach, but this time I seemed to tolerate it better.  I started Jamie on it, too.  It's hard to tell (more on that in a minute), but I think it is helping.

Just three days after starting vitamin D, I added a new supplement, Samento, to my Lyme regimen.  I read a study where Samento and another supplement were more effective in the lab than doxycycline (antibiotics) at killing Lyme, plus I'd heard good things about it from Lyme bloggers.  I felt slightly crashed for a few days, then had the best week I have had in many, many months!  It's hard to tell since I started the vitamin D just a few days earlier, but it looked like a brief herx reaction, followed by improvement!  The last week of October, I was almost completely symptom-free and felt great.

So, why did I mess with that success??  Yeah, that's what I've been asking myself for the last two weeks.  As you know, on November 1, I got a flu shot.  I have to say that I am really regretting that.  I've been badly crashed for two weeks now, though I'm not sure it's all due to the shot.  However, both of my sons got flu shots and had no reaction at all to it.  I suspect it affected me worse because my immune system dysfunction is worse than theirs.

This past Monday, I started Immunovir, a prescription medication that is supposed to help correct immune system dysfunction.  I realize now that I shouldn't have started it while I was still feeling bad, but I thought it might help normalize my immune system again and pull me out of this crash.  Instead, I have felt even worse this week, but now I don't know if that's because of the Immunovir or still because of the flu shot (or a combination).  I checked with my doctor and backed off the dose a bit yesterday, but I'm still feeling horrible, so I think I need to give it up completely until I get back to my normal baseline, so I can accurately assess its effects.  What I'm really worried about is that the flu shot may have caused a long-term relapse like I had last winter (which is why I got it in the first place!!).

OK, so that's my story.  Now it's time to go pick Craig up and take him for an MRI of his knee.  He hurt it playing soccer yesterday and had to go to school on crutches this morning.  So, he has an MRI tonight, then an appointment with an orthopedic specialist on Monday morning.  Did I mention I miss Ken's help??

Thursday, November 11, 2010

Two Inspiring Stories

After spending a long day driving back and forth to New Jersey with the kids to see our Lyme doctor, I am too exhausted to write much tonight.  I do think I my have figured out why I've been feeling so bad this week, but I'll have to tell you more about that tomorrow.

For now, I thought you might appreciate two wonderfully inspiring stories I just read about women with CFS:
Hope you enjoyed this beautiful day (it was gorgeous here - sunny and warm with brightly colored fall leaves everywhere).

Wednesday, November 10, 2010

Monitoring Heart Rate to Avoid Post-Exertional Crashes

Fellow CFS blogger Lee Lee alerted me to this excellent article about how to monitor your heart rate in order to help stay within your limits and avoid post-exertional crashes.

Although I have long understood the importance of avoiding aerobic exercise with CFS, this article provides some very specific tips about how to figure out where your limits lie, how to monitor heart rate, and how to use this information to stay within your limits (which will, hopefully, help you to eventually increase those limits).  It's filled with excellent, specific advice.  I certainly plan to put some of this into action immediately!

Hmmm...I wonder where my old heart rate monitor is?  Of course, the last time I used it, I was trying to increase my heart rate!  I'm definitely going to dig it out of my old exercise stuff.

Thanks, Lee Lee!

Monday, November 08, 2010

Movie Monday 11/8

Another Monday.  I'm still having crash symptoms, presumably from my flu shot a week ago but started Immunovir today.  Jamie felt fine, even after a soccer game and a sleep-over on Saturday, and went to school today.  He even managed to finish all of his make-up work in time for the end of the marking period.

Craig, on the other hand, is in bad shape.  He woke up with pretty bad CFS symptoms this morning - sore throat, congestion, OI dizziness, and feeling feverish (typical for him).  Amazingly, he made it through the entire first marking period without a single school absence (perfect attendance is like the Holy Grail for my kids!).  I figured the Friday night school dance plus Saturday soccer and sleep-over were just too much for him.  He felt a bit better in the afternoon - as is typical for him on a crash day - and played a little basketball with Jamie when he came home from school.  But he came back in after a few minutes, complaining of pain in both knees AND both ankles.  He also asked me if queasiness is an OI symptom.  So, nausea plus sudden-onset joint know what I'm thinking, don't you?  Sounds an awful lot like Lyme.  We'll see how he is tomorrow.

We didn't watch a lot of movies last week, but the two we saw were both amazing:
  • Invictus, starring Morgan Freeman as Nelson Mandela and Matt Damon, was just as incredible as we'd heard.  There was a long waiting list at the library, but it was finally our turn.  The whole family loved this moving, inspirational story about how Nelson Mandela used South Africa's rugby team (and its star player, played by Damon) to bring the country together.  My Quote it Saturday post was the poem, Invictus, from which the movie takes its name.   Highly recommended.
  • I also brought Precious home from the library last week.  As soon as Ken saw it, he said he didn't want to watch it.  I told him I knew that, so I watched it while he was away this weekend. Precious was everything I'd heard it was - violent and disturbing but also moving and exceptional.  It's about a young girl working to overcome her abusive upbringing.  As I anticipated, the abuse scenes were difficult to watch, but the movie overall was just so poignant and, ultimately, uplifting that it was worth it.  After all, the best movies make you feel something, right?  This is a brilliant film.
Have you seen any good movies lately?

P.S. To hear about what books we're currently reading, check out my Monday post at Book By Book.

Saturday, November 06, 2010

Quote It Saturday 11/6

It's been awhile since I've posted a Quote It Saturday.  We've had a crazy busy fall!  Today was Jamie's last soccer game - now the season is officially over for both boys.  It still feels like a miracle to me every time I see Jamie run down the soccer field - thank goodness for Florinef!  He's not always well enough to play, but when he does, he really moves - he's easily the fastest player on the team.

And we just dropped Ken off at the airport - he's headed to Germany, Belgium, and the Netherlands...we're going to miss him!  So, I have a tiny pocket of quiet time (well, not exactly quiet - Jamie has two friends over - but here's nothing urgent to do) and wanted to revive Quote it Saturday. 

This week's quote one isn't from a book (well, I guess it was at some point).  It's the poem from which the movie Invictus (more on that Monday) takes its name, the poem that kept Nelson Mandela going while he was in prison for 26 years.  It really resonated with me regarding living with chronic illness, which is a sort of prison sometimes, isn't it?

Hope you like it as much as I did:

William Ernest Henley. 1849–1903
OUT of the night that covers me, 
  Black as the Pit from pole to pole, 
I thank whatever gods may be 
  For my unconquerable soul. 
In the fell clutch of circumstance         5
  I have not winced nor cried aloud. 
Under the bludgeonings of chance 
  My head is bloody, but unbowed. 
Beyond this place of wrath and tears 
  Looms but the Horror of the shade,  10
And yet the menace of the years 
  Finds, and shall find, me unafraid. 
It matters not how strait the gate, 
  How charged with punishments the scroll, 
I am the master of my fate:  15
  I am the captain of my soul.





Friday, November 05, 2010

ME/CFS and XMRV in the News

Lots of news and updates published recently on ME/CFS and specifically on XMRV.  I found most of this information and references from the CFIDS Association of America's latest e-mail update, CFIDS Link - I highly recommend signing up for this e-newsletter.  You can sign up for the newsletter or read past issues here.
That's all the news for now.  I think I'm doing a bit better today.  I took a shower, so I'm resting from that, but I do feel less achy.  Have a good weekend!

Thursday, November 04, 2010

Flu Shots and CFS

Well, I finally got a flu shot, my first ever.

You might recall from my update last month after seeing my Infectious Disease doctor that she had changed her mind about flu shots for CFS patients and has been giving them since last year.  She felt the risk of being exposed to the flu - especially with the bad flu season we had last year - was greater than the risk of a reaction to the shot.  Only one of her CFS patients so far has had any problem with it.

So, I decided to go ahead and get one.  I waited for a week when Ken would be home, in case I crashed, and went to see my doctor on Monday morning.  Like others, she's been undecided about flu shots for CFS patients, too, so I shared what my ID doctor said, and we decided I should try it.  Despite my careful timing, Monday was probably not the best choice because I was a bit worn out from Halloween weekend (the nurse who took my pulse said, "Are you nervous about your shot?  Your pulse rate is really high."  Nope, just OI!)

So, I got the shot Monday morning...and I've been in a mild to moderate crash since then.  Bummer, huh?  It's not a terrible crash, and I think I'm doing a bit better today, but I've had an intermittent sore throat and mild achiness most of the week.  I'm hoping I'm at the end of it now, but I wanted to let you know what's been going on.

I also took my sons for their first-ever flu shots on Tuesday, and they've fared better.  Craig has had a minor sore throat in the mornings, but he started that on Monday - probably from too much Halloween fun!  He says once he has breakfast and medicines and gets to school, he's been fine.  Besides getting a flu shot on Tuesday, Jamie spent a total of almost 3 hours playing soccer (!), so his minor symptoms (bit of achiness and fatigue) could just as well be from that as from the shot, plus he's working long hours to try to make-up all the work he missed recently.  Both of them have been able to go to school each day.

So, mixed results so far.  We'll see how we fare this winter.  My motivation for even considering the flu shot was my 9-month long relapse last winter.  It started in mid-September, almost certainly from a viral trigger (though not necessarily the flu) and lasted until April.  This fall had been much better so far, so we'll see.  Of course, you never know how things would have been without the with most of CFS, it's a guessing game, right?

Bottom line is that I think the flu shot is a very individual decision for each CFS patient, based on perceived risks.  I think I would hesitate to get one if my immune system symptoms (sore throat, swollen glands, flu-like aches) were worse right now, just because it's an additional stimulant to the immune system.  If you do decide to get one, my ID doc says she learned last year that you're not supposed to split it into two halves (as she was doing at first) because it's less effective that way.

Anyone else out there have experience with flu shots?

Monday, November 01, 2010

Movie Monday 11/1

Happy Halloween (a day late!).  We had a very busy weekend filled with all our favorite Halloween traditions.  It was especially nice to spend some time together as a family, after all of Ken's recent traveling and the boys getting older and leading such busy lives.

We went to a local farm (well, it's not actually a real farm anymore, just a store, but it's a tradition...).  We ate tons of hot, homemade donuts and fresh cider, picked out our pumpkins, and Ken guessed their weights.  If you guess within a quarter pound, you get your pumpkin free.  Ken's really good at it, and he missed one this year by only 0.04 pound.

We spent Sunday carving jack-o-lanterns and making our costumes.  Our whole family (plus a friend) dressed as rock stars (that's me in the front).  What a blast!  One of our best costume years, I think (to some of our past costumes, type Halloween into the search box on my blog).  That black lipstick and eyeliner is really hard to wash off, though!

I was a bit tired out from all the activity this weekend but managed pretty well, even going along trick-or-treating to a few neighbors' houses.  Then, Ken and I came back home and let the kids hit the rest of the neighborhood.  I'm a bit worn out today but don't feel crashed.  More importantly, both kids made it to school today.  Lots of fun!

So, it's Monday and that means movies!  Jamie was home sick another 3 days last week (he's doing better now), so he and I saw quite a few.  When he was still so badly crashed last Monday, I went to the library and picked up a stack of old favorites I thought he'd like (we switched from comedies to thrillers this week):
  • The Sixth Sense - perfect for Halloween week and Jamie's first M. Night Shyamalan movie.  It's such a good movie with such a cool twist, and Jamie likes Bruce Willis - he loved it!
  • We watched Conspiracy Theory with Julia Roberts and Mel Gibson (not one of my favorite actors these days, but it's a good movie).  I knew Jamie would enjoy this thriller, and he did.
  • He watched The Invisible, one of dozens of scary movies being shown on FX channel last week.  He watched a few, but I happened to see most of this one with him, and I thought it was surprisingly good, about a teen boy caught between life and death and trying to find a way to communicate with people so they can find his supposedly murdered body and revive him before he dies.  Jamie loves this sort of paranormal stuff.
  • My mom and I went to my book group Wednesday night, so I set the boys up with a favorite of mine and Ken's, The Italian Job, a high-quality caper movie about a group of talented thieves pulling off their best (and last) job.  They loved it, especially the Mini Cooper chase scene!
  • And, I am embarrassed to admit that Ken and I watched another movie we'd already seen before on Saturday night! took us a while to catch on this time.  I brought home two movies from the library for us, thinking we'd seen one of them before (People I Know with Al Pacino and Tea Leoni).  We looked it up online and agreed that, yes, we did see it before (it was very good), so we set that one aside and watched the other one, Read My Lips, a French movie about an ex-convict who uses a deaf woman to read lips for him in order to carry out a crime.  We were probably three-quarters of the way through it before we began wondering whether we'd seen it before!  By the end, we were sure, though.  Not a brain cell between us!  Please tell me someone else does this...
Have you seen any good movies lately?  Hope you had a fun Halloween weekend!

Friday, October 29, 2010

More on XMRV and CFS/ME

I came across another couple of articles on XMRV this week that I thought might be of interest to you.

First is a brief article (actually a sidebar) called "Unraveling the Mysterious XMRV Virus" in a larger article on virus research at the University of Missouri.  The cool thing about this article is that it appears in a scientific news website completely unrelated to typical CFS/ME news - word is starting to spread about XMRV in all sorts of scientific research venues, which is great for us.

The other article is a very nice summary of XMRV basics, "An Explanation of XMRV Research So Far...", posted in one of the forums at Phoenix Rising by Bob.  If the scientific details have been confusing to you (as they have to most of us!), this is a clear and well-written summary of the basics to date.

Hope you have a great Halloween weekend!

Thursday, October 28, 2010

A Gorgeous Fall Day

The rain and dark skies finally left us today, leaving behind a perfect fall day, with bright sunshine, warm weather, and a cool breeze.  I brought my camera with me today when I took a walk, so I'm sharing some photos with you of the brilliant fall colors on display in my neighborhood.

Wait a minute...did you catch that?  Just in case you missed it...I TOOK A WALK TODAY!  It's the first time in months I've been able to walk all the way around my neighborhood, and I didn't even get out of breath on the hills!  I've been feeling absolutely great all week, and I feel like I've been reborn.

I'm not entirely sure why I'm feeling so well.  My best guess is that my latest addition to my Lyme treatment (Samento) is working.  I started it last week, went through about 5 days of feeling worse (i.e. herx reaction), skipped it on Saturday and Sunday so I would feel OK for my trip to New York, and I have felt really good ever since!  I also added a vitamin D supplement last week, after my latest labs (ordered by Dr. Levine) showed low-normal levels of D.  Maybe that is helping, too, though, the worsening last week makes me think the Lyme treatment is the major factor.  It's an on-going guessing game, isn't it??

The other thing making today such a great day is that Jamie finally went back to school and made it for a full day.  He went back last Friday about mid-morning but still felt run-down all weekend (of course, he pushed on so he wouldn't miss any fun with his grandparents).   He felt awful Monday morning, tried going in on Tuesday but only made it a couple of hours and was out again Wednesday.  He was feeling so down.  With this odd pattern of up and down and much more achiness than usual, I am quite certain that his crash has also been a herx reaction - he just started a new bartonella treatment two weeks ago.  This is actually great news - the first sign we've seen that his treatments for Lyme and co-infections might be working.  We're hoping some improvement will follow.

Thankfully, he got up this morning and was able to give it another try.  He surprised me by getting up and showering early, so I drive him to school at 7:15 and rushed back home to get Craig off to his bus (Ken has been out of town all week).  Jamie called me 10 minutes later, "Mom, school doesn't start until 9 am today."  Can you believe it?  Poor kid dragged himself out early and could have slept in!  The good news is that he lasted all day, and is even able to do some homework tonight.

And Ken came home this afternoon.  All in all, a very good day in the Jackson household.  Hope you enjoy the fall photos and are having a good day at your house, too!

Monday, October 25, 2010

Movie Monday 10/25

Another week gone by!  Last week was a rough one for us, as you well know if you read this blog regularly.  I was crashed, and Jamie, my 16-year old son, was also crashed badly most of the week.  He went back to school on Friday for a partial day and was able to enjoy some of the weekend, but he was back on the couch today.  I think it is, at least in part, a herx reaction to his latest bartonella treatment.  That's good news, but it doesn't make it any easier to get through.

We did enjoy the weekend, though.  My mom and her husband came to visit.  On Sunday, all the guys went to Baltimore for the Ravens-Bills game, while my mom and I took the train to NYC to see a Broadway show.  We also enjoyed a wonderful meal in a Spanish tapas restaurant.  It was a great day, and I handled it remarkably well, thanks to a long nap curled up across two seats on the train (sometimes it's good to be so short!).  It was a gorgeous day in New York.  Here's a photo I took in Times Square (sorry it's not very sharp - my camera phone is first-generation - it has an antenna that pulls out!)

So, with all those sick days last week, Jamie and I watched a lot of movies.  I showed him a bunch of old favorite comedies to cheer him up:
  • We kicked off the Sick Week Marathon with my favorite laugh-a-minute movie: Planes, Trains and Automobiles.  Steve Martin and especially John Candy are just hilarious.  Jamie loved it, especially the scene when the cop stops the burned out car (my favorite scene, too!)..."It may not look like much, but it gets me where I want to go."
  • The next day, we watched My Cousin Vinny, another favorite of mine.  Lots of good laughs in that one, too.  Marisa Tomei and Joe Pesci are fabulous in it.  I love the line about the "two youts..."
  • On Thursday, we watched Tootsie - Dustin Hoffman is so good in it.  Jamie enjoyed that one, too.
  • No time for movies this weekend, but my mom and I saw Next to Normal on Broadway, a stunningly good show.  It's a musical about a family torn apart by the wife/mother's bipolar disorder and depression.  I sounds like a horrible paradox, right?  A musical about mental illness?  But it was so good, with amazing music (it won the Tony award for best musical score) and great acting.  The story itself would make a good movie (the screenplay won the 2010 Pulitzer Prize), but seeing it acted out live a few feet in front of us was just incredible and emotionally powerful.
Have you seen any good movies lately?

Norwegian Study Finds XMRV in 62% of CFS/ME Patients Tested

Great news!  A new XMRV study was just published in Norway, confirming similar results to the original XMRV study done at WPI.  Here's an article explaining the findings:

Dr. Mette Johnsgaard of The Lillestrom Health Clinic tested 24 patients and 3 healthy controls for XMRV using the culture test and found that 14 were positive.

Of the negative tests, 11 were then retested with serology tests and 5 more positive results were found, bringing the total to 19 of 27. One of the positive serology samples was from a healthy control.

*The Lillestrom Health Clinic has now tested 80 patients and 50 are positive by either culture or serology test =96 a total of 62%.* This is very close to the 67% of positive patient results reported by Mikovits, Lombardi, et al., in* Science *in Oct. 2009.

The tests were done in cooperation with VIPdx labs in the USA.

More information about these results will be given on the 28th of November in Oslo at the XMRV/MLV seminar with Dr. Judy Mikovits. Details of the seminar can been seen here:  Register by writing to:

The Lillestrom Health Clinic is currently cooperating with many international ME experts in order to share knowledge about testing, treatment and research. Dr. Johnsgaard is also cooperating with
international experts who specialize in infectious diseases (Borna virus), retrovirology and biotoxic illnesses (Shoemaker), a probable secondary phenomenon in ME.

*In November 2010, the clinic will launch a large international research project on Human Gammaretrovirus and ME. *

In Aug. 2010, Dr. Johnsgaard was interviewed by NRK (Norwegian National Broadcasting) where she confirmed the two first positive XMRV patients in Norway. With that interview Dr. Johnsgaard opened the public debate about ME and XMRV in the Norwegian medical and political environment. The same day, Norwegian politicians and doctors reacted positively in a follow-up interview on NRK (see links below)

Virusfunn gir nytt h=E5p for ME-pasienter:

Another link with health minister Laila D=E5v=F8y - Regjeringen b=F8r gj=F8=re mer for ME-pasienter :

Lillestrom Helseklinikken is situated just outside of Oslo, Norway and specializes in the treatment of ME and other chronic diseases. They have recently begun treating patients from outside of Scandinavia.  
Kind regards,


The European Society for ME is a non-profit group, operated entirely by volunteers. You can support ESME with a donation by visiting:
Sue again...just wanted to point out that the methods used in this study are those that Dr. Mikovitz was explaining in her presentation at the NJ Conference last week:  culture tests and using multiple methods to find all of the XMRV in all of the samples.

Friday, October 22, 2010

Another Big Weekend

Just wanted to say a quick thank you to all of you who have commented or e-mailed me this week.  As always, you have been so wonderfully supportive, and I greatly appreciate it!

I am fine.  All of your comments are right on target - I have no idea why some people feel the need to lash out, but it's hard not to be affected by it.  I told Ken I knew I was as upset as I was in part because I was also crashed and not feeling well.  It's so hard to keep your emotions in check when you're feeling so poorly.  But all is well now.  You've reminded me that I'm not writing this blog for people who already know everything there is to know about the latest research (and are itching to "catch" someone else in getting it wrong)....I'm writing it for you, my friends, many of whom are unable to leave your homes to attend a conference like this or are unable to read through long, technical papers to figure out what is going on.  I'm also writing it for myself because the warmth and friendship you've all shown me over the years has made a big difference in my life.  Thanks!

As for me, I'm still somewhat crashed and still wondering how much of it is from the conference and how much is a herx reaction to a new Lyme treatment.  Jamie was flat on his back most of the week but returned to school mid-morning today (hurray!).  It hurts me so much when he is that sick.  I would gladly take all of his symptoms and double mine, if he could be well.  Hopefully, he's on the mend now.

Unfortunately, we have another big weekend coming up.  My mom and her husband are coming into town tonight.  All the "boys" are going to the Ravens-Bills game Sunday in Baltimore, so my mom and I are taking the train to NYC to see a play.  I love a day in NY with her, but I'm worried I'm not yet recovered enough for it - it means another long Sunday without a nap.  She's actually staying with us until next Thursday.  Next week should be our last really hectic week - it's the last week of soccer for Craig, and the last week (for a while) with evening school functions to attend.

I just remembered my plan for dinner tonight was to make something in the crockpot this morning...which, as you may have guessed, I totally forgot to do!  So I better get busy.

So, I know I'll be too busy for blogging this weekend.  Hope you all have a wonderful, restful weekend!

Thursday, October 21, 2010

Further Clarifications to Mikovitz's Presentation at NJCFSA Conference

Much to my dismay, I have received more messages alerting me to other facts I got wrong or misunderstood or mistyped in my summary of Dr. Mikovitz's XMRV presentation at Sunday's NJ CFSA Conference.  Apparently, my mistakes are being discussed all over the internet. 

I've come to feel as if this blog is our own little, private place to communicate with each other - me and all of you who comment or send me messages - a place for friends to chat honestly and openly.  But, of course, nothing on the internet is private, and I should be more aware that anything I say here can (and will) be copied and repeated...forever.

So, in the interest of accuracy, here are some further corrections and clarifications:
  • WPI found antibodies AGAINST, not IN, the envelope protein of XMRV. (I told you I didn't understand what she meant by envelope!)
  • The first studies to detect XMRV (Urisman et. al) found partial sequences of XMRV (that is all that can be determined from PCR). WPI has since fully sequenced XMRV.
  • Xenotropic doesn't mean human, it refers to a virus that can grow in the cells of a species foreign to the normal host species. Other mammals can have the XPR1 receptor too.  However, in her talk, Dr. Mikovitz DID emphasize that XMRV and PMRV are found in humans but not in mice.  Further, I misstated that MLV's are not mouse viruses (I got the terminology mixed up).  In fact, MLV's are mouse viruses, but there is confusion about this because MLV-related viruses (e.g. XMRV and PMRV) are not MLV's and not mouse viruses.  So, XMRV and PMRV are not MLV's (not mouse viruses) but they are only MLV-related human viruses.  Follow that?
  • It was Tufts, not Johns Hopkins that tested 75 mouse strains.
  • Retroviruses are not "constantly changing", but may recombine with other RVs or mutate over time.
  • Cheney clinic is in Asheville, not Dallas.
 Once again, my sincere apologies for getting some of the facts wrong.  Please understand that this was a 90-minute long talk, Dr. M spoke very, very quickly, and as I explained before, much of the technology and terminology was new to me.  Copies of her slides were so tiny that I literally can't read them at all, so I relied solely on my own notes.

Thank you to those readers who have stood up for me in various public forums and who took the time to kindly help clarify these points.

(No comment to those who left me nasty messages!)