Friday, April 30, 2010

Life Is Good

This week was a huge improvement over the last two.  I am finally, FINALLY, feeling good again, after more than six months of being mostly flat on my back.  Obviously, I still have CFS, but I feel as if I've gotten my life back.

I went to lunch at a friend's house this week, ate lunch out at a nice restaurant with Ken (it was Restaurant Week here, with good deals), cooked dinner almost every night, ran errands, and today went to the grocery store.  And...drumroll please....twice this week, I did stomach crunches and push-ups without crashing!  I was a bit appalled to find I can only do 10 push-ups now.  Before CFS, I could do more than twenty, and even just a couple of years ago, I could still manage 14.  Just goes to show how being completely sedentary can weaken you.  I hope to become stronger again - baby steps!

My Dad is visiting for the weekend, so that should be fun.  The last time he was here, I was horribly sick.  This afternoon, I was able to sit at the table and play a game with him and the kids.  Such a small thing that means so much!

So, I may not have time to post again this weekend.  We have two soccer games tomorrow.  My biggest concern for the weekend is how to stay out of the sun when it's 90 degrees and sunny out (my Lyme meds make me extremely sun sensitive).

Hope you have a good weekend, too!

Thursday, April 29, 2010

New CFSAC Members Announced

I just visited the blog My Life As I "StandUp2ME" and found this list of new CFSAC members (thanks for posting it!):

NEW CFSAC Committee Members:

Dane B. Cook, PhD
Madison, WI
Term: 05/10/10 to 05/10/14 (new)

Eileen Holderman
Galveston, TX
Term: 05/10/10 to 05/10/14 (new)

Michael Houghton, PhD
Danville, CA
Term: 05/10/10 to 05/10/14 (new)

Susan M. Levine, MD
New York, NY
Term: 05/10/10 to 05/10/14 (new)

Gailen Marshall Jr., MD, PhD
Jackson, MS
Term: 05/10/10 to 05/10/14 (new)

I'm excited - Dr. Susan Levine is the Infectious Disease specialist I see in NYC, the one who prescribes low-dose naltrexone for me!  She's a great choice - she's been specializing in CFS for many years, and, as an Infectious Disease specialist, she is perfectly suited to understand and analyze all the new research done recently and still to come on how infections relate to CFS.  I'm not familiar with the other names on the list, but if they're as well-qualified as Dr. Levine, then I'm happy!  Anyone else know the other names on the list?

(NOTE:  The CFSAC is the CFS Advisory Committee, the overseeing committee for CFS within the US government, working directly with the CDC and NIH.  Their next meeting is May 10 in Washington.  I submitted testimony to be read at the meeting, but I haven't heard back yet).

Tuesday, April 27, 2010

XMRV Update

I've been meaning to post an update on the XMRV/CFS research but just haven't had the time to sort through everything (you're probably sick of hearing this, but I still haven't gotten through those hundreds of unread e-mails from my vacation two weeks ago!).
So, I was thrilled when, once again, Cort Johnson over at Phoenix Rising posted an excellent, thorough summary of all the latest XMRV news at his blog, Bringing the Heat.

Go on over and take a look - Cort has a real talent for distilling lots of complicated information into an understandable explanation.  Bottom line is this:
  • The negative replication studies in Europe have had a very bad effect on further funding for research into XMRV's role in CFS.
  • There are several possible explanations for  the negative results in the European studies, and WPI and the original study's authors still feel confident that XMRV is an important factor in CFS.
  • In one negative study (the Dutch one, I think), its authors actually traded samples with WPI and WPI did find XMRV in 3 samples (two from CFS patients and one from a healthy control), but the study's authors went ahead and published their results without even mentioning WPI's contrasting results.
Those are just a few important points.  Read Cort's summary and/or check out the news on WPI's website (several of the documents Cort references are available in full here) for details.  Lots more research is needed - as always with CFS, the lack of funding is limiting what can be done.  Consider donating to WPI or the CFIDS Association, if you are able to.

Monday, April 26, 2010

Movie Monday 4/26

I did it!  I went away on the Women's Retreat for 24 hours and managed fairly well.  I missed the main event (a discussion group Saturday morning on loss), but I enjoyed the rest of the weekend.  It was wonderful to spend so much time with my two close friends, and I really enjoyed getting to know the other women there (10 in all).  I even managed a short walk on the beach - my wonderful friends went with me, at my snail's pace, and one of them even walked back for my car when we exited the beach at the wrong street (the beach was only two blocks from the house we were staying in, but they didn't object to driving there!)  We played games Saturday night, which I love, and spent a lot of time talking.  There was someone there with celiac disease, so I wasn't the only one with dietary restrictions or health problems.  Of course, being with other people for 24 hours was tiring, but all in all, I really enjoyed the mini getaway.  I was tired Sunday, but my afternoon nap perked me up.

So, we didn't have a lot of movie time this weekend (some of the women went to see Oceans at the theater, but I opted to stay behind for games!  They said it was excellent).  Ken and I watched one movie on Friday night:
  • One True Thing.  Quick summary:  I loved it; Ken didn't!  He felt it was too depressing, but I love movies that are based on real life, with all of its joys and sorrows.  Besides, crying over a movie sure beats crying over your own life.  Yes, I both laughed and cried!  The movie has an all-star cast, with Meryl Streep, William Hurt, and Renee Zellweger.  Renee plays a grown daughter who lives in NYC and works as a writer at New York magazine.  She comes home for a while when her mother (played by Meryl Streep) gets cancer.  She has always identified with her father who is a college literature professor; her goal in life was to not become her mother who is a very happy homemaker.  So, of course, this makes for a complicated  - and sometimes comical - situation when she returns home to care for her mother full-time.  I really liked this movie.
How about you?  Have you seen any good movies lately?

Friday, April 23, 2010

Weekend Plans

I am finally back on my feet (literally) today!  In fact, this is the first time I've opened my laptop all day, and I'm sitting up in the recliner - I haven't laid on the couch all day - woohoo!  What a relief.  I spent 6 days flat on my back, with sore throat and severe aches, just for the privilege of getting my period.  It just doesn't seem fair.  I went back on the pill last night and woke up feeling good today.

I've had a busy day.  I saw my doctor for my 6-month check-up.  Not much new.  I told her about the 6-month relapse I had this fall and winter, updated her on my continuing Lyme treatment and my latest lab results from the Lyme doc.  I did mention these very weird abdominal pains I get about once every couple of months - severe pain on the right side that takes my breath away, then goes away after a few hours.  Something similar happened the first year I got CFS - I ended up in the hospital and then my OB/GYN did exploratory laproscopy, but they never found anything.  So, she's mystified (as she often is with me), but the next time it happens, she wants me to go get an x-ray while the pain is there. 

She also told me about a new CFS patient she has who she'd like me to talk to.  She said, "I think you two will get along well.  She comes in here with notes and charts and the latest research, too!"  I told her I'd be glad to talk to someone else locally who has CFS because I don't know too many (mostly kids and teens).  She said, "Well, they're all patients here!"  That's because she's one of the few (only?) doctors  in Delaware who "gets" CFS.  She's a family doctor, not a CFS expert, but she understands it as well as any of us do, she knows how to treat sleep dysfunction and OI, and she's willing to try new treatments when they come along.  I'm very lucky to have stumbled onto her after seeing so many clueless doctors the first year I was sick.  She was the first one who recognized I had CFS.

Anyway, since I've been flat on my back for two weeks, I also stopped at the library, bank, post office, and grocery store. I know, I know - I can hear you warning me from here!  I'm really doing fine today and feeling like myself again.

So, here's the big news...I'm going away this weekend by myself!  Well, not actually by myself...I mean, without my husband and kids.  I'm going on a women's retreat weekend along with two of my closest friends.  It's an annual event hosted by the local Unitarian church that I've always wanted to try.  I'm not actually a member of the church, but I've been in its book group for five years, and we go to Christmas Eve service!  Many of my friends go there, and I really like the Unitarian approach - very open-minded and tolerant, welcoming people of all backgrounds and faiths.  I just don't have the energy to get too much more involved right now (plus Ken doesn't want to give up his Sunday mornings - the only day of the week we don''t have to jump up and go somewhere).

Well, I got a little off-track there - I'm sort of babbling today, aren't I?  It's a sign of my energy and clear mind!  Anyway, my friends convinced me to come along and have assured me its very laid back - no schedule, plenty of free time, I can take my afternoon nap, etc.  It's held at the beach house of one of the church members, and they've promised me a bed (and I'll of course bring my pillows, ear plugs, meds, etc.).  So, I'm a little scared to be going into an unknown situation (because of CFS), but I'm also really excited that I'll be spending most of the weekend with my friends, doing something just for me.  The sad truth is that I very rarely do anything for myself.  I mean, obviously, I have to take care of myself because of CFS, and I rest, etc.  But I normally use all of my available energy being responsible - getting things done, working, taking care of other people.  That's a topic for another post!

I think I can handle this, and I'm really looking forward to it.  Wish me luck!

Wednesday, April 21, 2010

An Inspiring and Hopeful Story

I'm still lying low, trying to wait out this crash and using most of my mental energy on actually earning some money for a change (some things are finally starting to open up again in the freelance world).

So, I thought I'd let someone else write today's blog post.  I received an e-mail letter this weekend.  When I read it, tears came to my eyes.  I asked the writer if I could share it here.  I hope you'll find it as inspiring as I did.

"I'm a 23 year old medical student that came down with a severe case of 
mononucleosis in December 2009. My case was unusual and difficult to 
diagnose, so I spent hours (hundreds, literally) on the internet 
researching, and often came up with your blog. It was an extremely 
scary time, because the 8 different doctors I saw couldn't tell me 
when or if I'd get better.

I'm happy (thrilled, ecstatic) to report I'm almost healed.  Yesterday 
I ran 2 miles, swam 20 laps, and feel great today. I'm on my way to 
the rock gym to climb for the first time since November.  This morning 
I found myself sitting outside, just thanking every particle of the 
universe for being alive and having good health.

I wanted to tell you, and everyone else that you are networked with 
and communicate with...this has changed my life path.  I know now that 
I will graduate medical school and go on to specialize in diseases 
like yours.  I never, ever thought it would take an experience as 
difficult as this one to make me realize what kind of physician I am 
destined to be.  I will never forget the experience of 3 months into 
my illness, seeing this particular doctor...I spent over a week 
planning out my visit, making a little list of symptoms, and was 
so...excited, that maybe I might have found someone that could finally 
help me.  I got there, waited anxiously for her to come in, and when 
she did...she hardly listened to me. I was given a bunch of Ambien and 
sent out the door. I remember coming home and actually crying because 
I was so distraught in the idea that the healthcare system, in which I 
had placed so much of my heart and future, was such a complete and 
epic failure.

I don't know if I healed myself. I worked hard to improve my sleep, my 
mental health (I got a pet cat!), and I slowly and gradually worked 
into an exercise program (which was really painful at first). I 
swallowed more vitamins than I knew existed. I took olive leaf, 
valerian, and coconut oil. I can't say for sure that any of those 
things was the one that did it.   I know that most likely I just had a 
severe case of mono, that was likely to end with time anyway. I know 
this is nothing like CFS, and I don't pretend that my 6 month 
experience was anything like your 8 year one. But this feeling of 
being 'reborn'...I don't know how to describe it.  Every day I feel 
like I'm on borrowed time. I don't want to waste a second of it.

I promise, that as a future physician, you and everyone else that has 
CFS will experience something different from me.  I know now that 
there is a huge difference between 'curing' and 'healing'.  I'm 
committed to helping those who suffer from CFS, and other 
misunderstood chronic diseases as well, find the that path. I will be 
a healer.

I want to thank you, personally, for providing such insight just 
through your personal experiences."

Thank YOU, Jennifer, for reminding us that some people do recover and for giving us hope for the future of CFS healthcare.  You're going to be an amazing doctor!

P.S. I do think she had CFS.  Dr. Bell told me once that many people with virally-triggered CFS (especially post-mono/EBV) recover within the first year and are never even accurately diagnosed with CFS.  In fact, the length of time it usually takes for someone to get diagnosed with CFS (a year for me) probably skewers the recovery data and misses many of the milder cases that resolve themselves.

Tuesday, April 20, 2010

Vacation Pictures!

I forgot to mention yesterday that I've posted pictures from our Louisiana road trip on our Road Trip Blog.  Check it out if you're interested.  Scroll down to the April 1 post to read/view them in order.

My allergies have finally improved a bit - most of the trees here are now past their blooming stage (gorgeous flowering trees in Delaware but lots of pollen!), but I'm feeling crummy for a different reason.  In a case of very bad timing, it was time this week for me to go off the pill (I take a 90-day pill to keep my hormone levels steady) and get my period.  It always makes all my CFS symptoms flare-up, so I'm back on the couch with sore throat and aches, plus massive headaches every afternoon and evening.  Ugh - hormone hell.  At least I know it will pass in a few days.  Hope you enjoy the photos!

Monday, April 19, 2010

Movie Monday 4/19

Yes, Movie Monday returns, though we're still in catching-up-from-vacation mode!  We only watched one movie this weekend because we've been trying to get caught up on all the episodes of our favorite TV shows that we missed while we were gone.  With some shows, it doesn't matter if you miss a week or two, but for those with an ongoing storyline, we wanted to catch up. 

The problem is that we are still living in the dark ages with TV technology - using a VCR to record shows.  My mom got us a Tivo for Christmas, but we really don't want to start up yet another monthly bill, so we haven't set it up yet.  So, I programmed the VCR to tape The Amazing Race while we were gone (an awesome show we watch with the kids), but we have to rely on watching the rest of the missed shows on the computer.  The problem with THAT...we watch on the computer in the office and I can't lie on the couch!  Watching a TV program over a wireless connection on the laptop just doesn't work well.

So, anyway, we've been sitting in the office after the kids go to bed, catching up on Lost (first priority!), Flashforward, Grey's Anatomy, and Private Practice.  We still have a ways to go, but we're almost ready for this week's shows!

We did watch one movie this weekend:
  • Infamous, one of two movies that came out in the same year that covered the exact same topic: the story of Truman Capote researching and writing In Cold Blood.  We watched Capote a few years ago.  Even though this was essentially the same story - a few details were interpreted differently - we still really enjoyed this interesting and sometimes funny movie.  For starters, Capote was fascinating, as was the story behind In Cold Blood (a brutal murder in Kansas). Also, I thought Sandra Bullock did a terrific job playing Harper Lee in this movie (the author of To Kill a Mockingbird was Capote's close childhood friend; she based her character Dill on him).  As a nonfiction writer myself, I find the story of Capote writing In Cold Blood fascinating.  With this book, he created a whole new genre, Creative Nonfiction: true stories written like a novel.  I recommend both Capote movies (though probably not in the same weekend!).
One other movie-related observation Ken and I have made recently...  Have you seen the ads for the newly released Death at a Funeral in US theaters?  It's a total copy of a British movie with the same title - which was absolutely hilarious, by the way!  We saw an ad on TV recently, and Ken and I looked at each other in disbelief.  It looks like it's the exact same movie, remade with African American actors instead of white British actors.  I can't tell if the script is the same, but from the ads, it looks identical.  Why would you remake a recent movie that was great in the first place?  We saw another example, too.  A recent DVD included a preview for Mostly Martha, an Italian movie that looked startling familiar - again, the exact same storyline as a recent American film, No Reservations (which I reviewed here recently).  Now, in this case, maybe the original was in Italian (I'm not sure), so an English-language remake might make sense.  Anyway, a strange trend.

Have you seen any good movies lately?

Saturday, April 17, 2010

Quote It Saturday 4/17

Busy weekend here.  Craig had a school dance last night (his first-ever semi-formal!), both boys had soccer games this morning, and Jamie has two Sweet Sixteen parties to attend, one tonight and another tomorrow.  Both boys are trying to pace themselves and hoping to survive all these activities without crashing.  So far, so good.  Craig was pretty wiped out this morning, after his dance last night, but has already rebounded.  Ken has coached two soccer games and is chauffering the boys to their other activities.

As for me, I'm still suffering in allergy land, although I did make it to the soccer games today.  I've been desperately trying various treatments, and I may have found one that helps.  I've been on Allegra every day for many years, so I decided to try Zyrtec today (it's now over-the-counter).  I tried it years ago (pre-CFS) and it made me drowsy, but I've been feeling so completely crashed from these allergies I thought, "So what if it does make me drowsy?  Would I even notice?"  And, guess what?  I think it might be helping a little, along with strategic doses of Sudafed in between nap and bedtime.

So, anyway, it is time once again for Quote It Saturday, featuring a quote from a book I've read.  Today's quote is actually from a teen novel I recently read, Where Nina Lies by Lynn Weingarten.  As often occurs, the topic is not chronic illness, but one character's thoughts about a different sort of life-changing trauma rang true for me.  Here, the main character, Ellie, is talking about her sister's mysterious disappearance two years ago:

There are some things a person just never gets over, that the phrase "get over" doesn't really apply to.  And when one of those things happens in your life, it doesn't matter how much time has passed, or if you're sitting alone in your room or at a party surrounded by a hundred people, and it doesn't matter if you're actually thinking about it or not because no matter where you are or what you're doing, it's still there.  It's not just something that happened.  It's become a part of you.
          - Where Nina Lies by Lynn Weingarten

Isn't that just like living with CFS?  Even on a good day when you're feeling pretty good, even at an important event that you are well enough to attend, even in the midst of a happy moment, it is always there, a part of you.  By the way, it was an excellent book.

Hope you're having a good, allergy-free weekend!

Thursday, April 15, 2010

Why Don't I Look As Bad As I Feel?

Whew, what a hectic week.  I've been pretty badly crashed but still running around - bad combination, right?  Now, there's nothing major for the next few days, and I'm just breathing a big sigh of relief and retreating to the couch.

My mom was visiting this week.  It was wonderful to see her, and she was a lot of help, too.  Like she said at the train station today, she and I can just talk forever!  We never run out of things to say to each other, and we understand each other so well.  Normally, we get on the phone and spend an hour talking (no such thing as a quick call with us), so it's a treat to spend a few days together.  It's a shame I felt so crummy all week.

At one point this week, I glanced in the mirror while washing my hands and was stunned that I looked so normal.  I was feeling horrible - sore throat, achy all over, exhausted - but none of that showed on the outside.  I wish sometimes I could make myself look sicker when I feel so bad, so people would know how fragile I am at that moment.  Sometimes it does show.  I just picked my son up from the bus stop, and he said, "Are you feeling OK, Mom?  Did you have a good nap?  Your cheeks are all flushed."  My kids know the signs!!

I did make it to my book group last night, just barely.  After dinner, I drove my sons and my mom to soccer practice and came back home to lie on the couch for 45 minutes - no TV, no reading, no laptop - I just laid here with my eyes closed.  I meant to meditate, but instead I was thinking, "Maybe I can make it to book group.  No, I should stay home.  I might be able to go.  I shouldn't," and on and on.  I did feel a bit better after the rest and did go, but I was totally wiped out afterward.  Still, I enjoyed the social interaction, and we were discussing The Help, which was one of my Top Ten Books of 2009.

I'm pretty sure this crash is still from allergies.  They're off the charts, even with allergy meds, Sudafed, and nose spray, and the high pollen counts made the front page of the newspaper today.  Sigh...viruses triggering crashes in the fall and and winter, allergies in the spring...what's left? 

Anyway, I'm planning a day of rest tomorrow and looking forward to some of our favorite shows on TV tonight (Flashforward and Grey's Anatomy).  Then, maybe I will finally be able to tackle my 400 unread e-mails and that huge bin of mail sitting in the kitchen...

Monday, April 12, 2010

Back to the Real World

We got home from our spring break trip at 7 pm last night, so re-entry into the real world was tough this morning!  We drove over 2700 miles, through 8 states, to Louisiana and back, camping in our pop-up camper along the way.  We had a great time, both in rural Cajun country and in our beloved New Orleans.  We ate way too much - the food in Louisiana is so amazing! - and enjoyed camping along the way.  I'll post pictures soon (hopefully) - this week is already shaping up to be a hectic one.

As usual, I felt much better while on vacation than I normally do at home.  I've had various theories over the years - the time in the car keeps me off my feet, not having to do "maintenance" activities like laundry and grocery shopping leaves me more energy for fun, etc. - but I think the most significant factor is simply stress and having too much on my mind.  At home, I'm in constant mental motion, even if I can't manage much physically.  There's just so much to do all the time!  Keeping up with all our schedules, planning meals, running errands, paying bills, picking up kids, picking up clutter...not to mention actual work.  On the road, everything is planned already.  I can just relax and not think for awhile. 

We all really love our road trips together.  We listen to music and audio books, try to find good lunch stops, take naps...well, except for Ken who has to drive!  We love exploring new places and returning to old favorites.  I even managed a LOT of walking in the French Quarter - hours of strolling the Quarter, after struggling to just manage a walk around the block at home recently!  There was a little payback the next day but not much considering the amount of activity.

I did notice, though, that after a few nights of staying in hotels in the city, we all got a bit cranky.  The kids were bickering; Ken and I were bickering.  When we started camping again, everyone seemed to relax.  Maybe we were just overtired from all that walking, but I think camping outdoors brings a degree of serenity.  There's no noise (well, except for the guy snoring at full volume in the next tent on our last night!), no tv, no outside distractions.  It's just the four of us in our little home on wheels.  We have simple meals, sit around a campfire in the evening, and read together before bed.  I certainly sleep a lot better in the camper than in any hotel room.

So, it was a wonderful trip, but now it's back to reality - a week filled with appointments, soccer practice, and schedules.  We have mountains of dirty laundry (the downside of camping), very little food in the house, and I have 400 unread e-mails to get through!  In addition, my mom is coming in to visit tomorrow and staying until Thursday.  I've been looking forward to her visit for a long time - she's coming to my neighborhood book group with me - but the week is packed full of commitments.  Also, within 15 minutes of arriving home, my allergy symptoms went through the roof.  Good old Delaware - home sweet home ( I never had allergies until we moved here when I was 25).

On the bright side, only 2 more months until our summer road trip!

(P.S. If you'd like to read about Louisiana and experience vicariously some of what we did, I highly recommend two wonderful books I recently read and reviewed:  a memoir called Gumbo Tales: Finding My Way at the New Orleans Table by Sara Roahen that I carried with us on the trip, referred to often, and read passages out loud to my family and a warm and wonderful novel set in both rural Louisiana and New Orleans, The Crowning Glory of Calla Lily Ponder by Rebecca Wells (who has Lyme disease) that is especially good on audio.  I recently lent this one to my mom, and she kept calling me to talk about it and cry (though it is very uplifting, despite the tears!).