Monday, January 31, 2011

Movie Monday 1/31

Well, I think my nightmare computer week is over, thank goodness.  That fourth trip to The Apple Store seems to have done the trick.  I didn't have time to catch up today, though, because Jamie and I had to make our trip to NJ to see our Lyme doctor.  Thank goodness he drives the whole way now - I was really worn out today.  The kids had an easy time convincing me to dump my dinner plans and get take-out burgers and fries tonight!

After days filled with stressful computer problems and snow days, we spent our evenings escaping reality with some movies this weekend:
  • We watched Red this weekend with the kids.  Craig saw it in the theater with a friend a few months ago and was really excited to share it with the rest of us!  It's a funny and fast-paced thriller about a group of retired CIA agents, played an all-star cast of Bruce Willis, Morgan Freeman, John Malkovich, and Helen Mirren (a very different role for her!).  They discover someone is trying to kill them and leave retirement behind to investigate.  Lots of fun.
  • Craig went bowling with friends Saturday night, so Ken, Jamie and I watched Cloverfield, a unique and scary thriller.  It starts with a group of friends in NYC at a going-away party for one guy, when some freaky things start happening.  Soon, they are on the run from some horrifying creatures while the city is falling apart around them.  The hitch is that the whole movie is filmed from the perspective of a handheld video camera by one of the party-goers.  It made for a very frantic, you-are-there feel (though Ken said it made him sick!)
  • Last night, Ken and I watched Crazy Heart, with Jeff Bridges and Maggie Gyllenhaal (one of my favorite actresses).  Bridges plays Bad Blake, a once-famous country singer who is now playing bowling alleys in small towns while his former back-up singer has made it big.  He's in bad shape - constantly drunk, chain-smoking, and sleeping with random fans in every town - when he meets Jean, played by Gyllenhaal, who interviews him and shows him there may be something better out there.  It was very good - I can see why it made lots of top 10 lists for 2009.
  • In between, Ken and I finally finished the last season of Saving Grace on DVD.  What a spectacular show!  The finale was a real tear-jerker, though.  We also watched a few more episodes from season 2 of Mad Men - do any of those characters have an ounce of self-control??
Have you seen any good movies lately?

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

Sunday, January 30, 2011


My computer problems continue.  After a third trip the The Apple Store on Friday, I thought everything was OK.  My laptop seemed fine for about 24 hours, then suddenly, the original problem that began this whole torturous ordeal returned!  So, it's back to the Genius Bar today, and my stress levels are soaring once again.  I'm at the point of just wanting to live without computers forever!

Then, in the midst of this horrible week, I noticed a pleasant surprise.  While I was busy trying to fix my laptop problems at the end of this week, my CFS blog hit 100 followers!  What a nice treat in the midst of all this stress.

Thank you, to all of you, for reading and following my blog!  I never dreamed when I wrote my first post almost 5 years ago that I would someday have so many people reading my blog.  I was stunned when I got my first comment! 

Because of you, I really don't even think of this as a stand-alone blog anymore but as part of an online community.  Writing here, reading other CFS blogs, and interacting with all of you has enriched my life in ways I never dreamed when I started this.  I can't imagine how people managed to live with chronic illness before the internet.  I have made so many friends here.  Thank you for reading, commenting, writing, and for all of the support, encouragement, and friendship you've given me these past five years.  I feel truly blessed.

sigh...OK, I guess I wouldn't want to live without a computer after all.  I better get back to my problems.  Thank you!!

Thursday, January 27, 2011

Fed Up!

Warning:  I'm in a cranky mood, so if you don't want to listen to griping, you should move on...

Uggh!  My computer problems are making me crazy.  I can't imagine how anyone could stand a career on IT.  I'm still typing this on my old desktop.  My laptop is making progress, but there are still a couple of incredibly frustrating problems.  I may have to erase it and try again, but I really don't want to!!

So, I've been spending a lot of time sitting up in the office at the desk (I usually use my laptop on the couch), and I'm tired and overwhelmed.  I told Ken I'm ready to pull my hair out and jump off a bridge.  He laughed and said, "Really?  Both at once?"  I'm trying to keep my sense of humor, but it's hard.

And, of course, as always, my physical limitations are making everything much harder.  I'm sick of feeling worn out, sick of taking so many pills, sick of always feeling behind and never catching up.  All the stuff I had planned to do this week is just piling up; the longer my computer is down, the worse it gets.  I'm getting to the point where I don't even care about all the work piling up.  I just want to curl up in bed with my book and forget about everything else.

Sorry for the rant, but I knew you guys would understand.

Another snow day here today.  We got a foot of snow last night, so school is cancelled, and Ken is working from home.  The kids are thrilled - they're outside playing.  Wouldn't it be great to be a kid again, on a snow day?  No responsibilities, no worries, no computer problems.

Ok, I better get back to it.  I just erased my hard disk AGAIN and need to try re-installing my system and my files AGAIN.

Wednesday, January 26, 2011

Back Soon (I Hope)

I've had very limited internet access all week due to problems with my computer.  After spending many hours at the Apple Store with some great Geniuses at the Genius Bar, we've come to the conclusion that the only option left is to erase the hard drive on my beloved MacBook and re-install the system from scratch (the likely cause is some corrupted files that are now affecting the system).  I'm in the process of backing up all my files which is taking forever because of the problems.  I'm writing this from my ancient e-Mac desktop (11 years and still going!), but I'm a bit limited here.

Just wanted to let you know why I'm not posting or visiting much.  Hopefully, I'll be back in shape before too long!

Tuesday, January 25, 2011

Emergency Call for Female ME/CFS Patient in Indianapolis

Spent my day messing around with another computer problem - I can't send e-mails now!  Must be a side effect of rebuilding my system yesterday.  So, not much time for a post, but I wanted to pass this along from ME/CFS Worldwide Patient Alliance:

We have a reporter who is doing story for metropolitan newspaper about the ad and the illness. She has already interviewed a nationally-known physician / researcher.

She is doing this for "Woman's Health" month. So she needs a woman and she needs someone local to Indianapolis.

Names will have to be used. She will ask about your personal experience with the illness. Please e-mail me asap if you are a patient and don't mind being interviewed for newspaper:

Spread the word, help us get this out.

Deadline looming. All she needs is 15 minutes on the phone.


If you can help, e-mail Tina directly at Tina Tidmore (I can receive e-mails but wouldn't be able to forward to her).  Thanks!

Monday, January 24, 2011

Movie Monday 1/24

Whoops...almost missed my Monday post again!  Very busy day, though I didn't anticipate that.  Jamie just had one mid-term today (his last), so I picked him up at 9:30 am and convinced him to come to the mall with me for both driving experience and a bookstore stop.  He deeply regretted saying "yes"!

Our first (and only) stop was the Apple store where I told him my Genius Bar appointment would only take 15 minutes.  We were there for 3 1/2 hours!!!  However, I am grateful to my assigned Genius, for his persistence in finally solving my bizarre problem.  I've been unable to upload photos to the internet for a few weeks now.  I won't bore you with the details, but he finally figured out there were a couple of corrupted files on my computer.  I'm back in business now!  Only problem is that one of the corrupted files was somewhere within iPhoto (the Mac's photo software), so he was able to save all my original photos (thank goodness), but I lost all editing I'd done to photos.  If you need me for the next six months, I'll be re-fixing red eyes on 10,000 photos!

Anyway, I'm sure you don't want to hear about my computer problems because it's Monday and that means movies!  We fit in a few this week:
  • In last week's overflowing summary, I forgot to include the DVD I watched Saturday night while Ken and the boys were snow tubing.  I enjoyed Ladies in Lavender, starring Judi Dench and Maggie Smith as two elderly sisters living in an English seaside village, sometime between the World Wars.  During a storm, a mysterious young man washes ashore next to their house.  They bring him in and end up nursing him back to health.  The twist?  The man doesn't speak English and can't tell them where he's from or what happened to him.  The ladies become very attached to him, though as he heals, it becomes clear he will eventually leave them.  It's a sweet and gentle story, with a few twists, made especially enjoyable by the excellent acting.
  • When Ken got home on Friday, we watched Ironman 2 with the boys.  You may recall we saw Ironman last weekend and everyone enjoyed it so much, they wanted to see the sequel right away (one advantage of being so far behind in seeing movies - no waiting for the sequel!)  Ironman 2 was just as entertaining as the first movie, with some good performances by Robert Downey Jr, Gweneth Paltrow, Don Cheadle, Mickey Rourke, and Scarlett Johansson.  Lots of fun!
  • Ken and I went out to dinner by ourselves Saturday night (gasp!  can't remember the last time) and left the boys with pizza and Clash of the Titans.  We only saw the last few minutes, but they said it was great.
  • Ken and I skipped movies this weekend because we are still making our way through the last season of Saving Grace, starring Holly Hunter.  There are 19 episodes, and we only had one week to watch them (couldn't renew because there's a waiting list), so we've been cramming them in.  Actually, it's overdue now, but we still have it (we're so bad) - just 4 more episodes to go!  It's an excellent TV show about a free spirit Oklahoma City police detective (Hunter) who has a real-life guardian angel named Earl.  It's a mix of police drama and spirituality, and Hunter is amazing in it.
Have you seen any good movies lately?

Friday, January 21, 2011

XMRV in ME/CFS: New Facts and Findings

I'm still a bit down this morning, though maybe better than yesterday.  Unfortunately, I just had to shovel a little again.  My 12-year old son did most of it (the kids had another 2-hour delay this morning), but I wanted to clear a spot to park the cars.  Thank goodness my husband gets back today!!

A couple of days ago, I posted links to a summary of a recent XMRV presentation.  The summary was written by Lannie in the Lymelight, and I think she did an excellent job summarizing a lot of information.  I encourage you to click on the link and read her entire two-part summary.  But, in the middle of the night, as I was struggling to get back to sleep (rough night!), it occurred to me that some of you may not be up to reading and understanding the whole thing, yet I think there is some critical information in there.  So, I thought I'd post a few highlights here for you.  If you're really badly brain-fogged, try just reading the parts in bold!

The following statements are excerpted directly from Lannie's summary on her blog (my own explanations or clarifications are in parentheses):
  • As most of you know, the detection of XMRV in blood cells of patients with CFS was first published in Science, October of 2009. At the time XMRV RNA/DNA was detected in 67% of patients with CFS, XMRV protein was detected in greater than 85% stimulated/dividing T and B cells, and an antibody to XMRV Envelope was detected in over 50% of CFS patients. Exactly one year later Mikovits was published again, after improving on original testing techniques to find XMRV infection in 98% of the original cohort.
  • (There has been a lot of media attention paid to recent negative XMRV studies.)  Both Whittemore and Mikovits addressed the skeptics – confidently, calmly and articulately. Whittemore put it best when sharing what Mikovits has many times reminded her, “positive papers take forever – months or even years to publish. Negative papers only take a few weeks (to publish).”  (The two presenters described in detail why the negative studies do NOT contradict the positive ones and why contamination is the cause of the positive results).
  •  Even with skeptics galore, hope is not lost. Enter a second study, confirming what Lumbardi, Ruscetti, Mikovits, et all proposed in Science, October 2009. This paper, known as the Lo/Alter for Dr. Shyh Ching Lo and Dr. Harvey J. Alter, found MRV, closely related to Polytropic MLV, in 86.5% of CFS patients and 6.8% of healthy controls.
  • Again, understanding the nay-sayers to the Science publication, the Lo/Alter team rigorously ruled out contamination. They are the only other study, like that published in Science 2009, that controlled its own samples. If samples are not pristinely maintained (i.e. some might be frozen and thawed REPEATEDLY (updated 1/20/11), "the results will be negative," confirmed Mikovits.
  • Another study, unpublished, but shared with the WPI is from the Cheney Clinic in North Carolina. He tested a group of 47 patients, all families, with 81% positive for XMRV. The findings in this group are astounding. The ratio of male to female was identical. This is NOT a woman’s disease! Half of all family members with a CFS case are XMRV+. And then the list goes on and on of parent/child correlations with CFS, XMRV and Autism. (I previously reported on on this family study which I still find astounding).
  • (Another family study has been conducted by WPI with similar results).  A quick summary provided by Dr. Mikovits regarding families. She can confirm, there is XMRV in children under the age of 5. To date they have confirmed XMRV in 16 of 17 families with neuroimmune disease amongst multiple members.
  • What we know about XMRV is that it integrates into human tissue, demonstrating that it is a human infection. We can confirm it is NOT an endogenous virus to humans. It is in fact a new human retrovirus. However, how it got into humans is still unclear at this time. 
  • In discussing tests, another very important take away was that if you test positive you are positive. If you test negative, they are not able to confirm it is absolutely negative. Until there is further understanding of the XMRV lifecycle, they can not confirm this.  
  • So where are we seeing XMRV? The disease association seems limitless. It’s showing up in every corner of the neuroimmune world.  One private practice shared it’s associations with Mikovits and the WPI team. This practice started testing its neuroimmune patients and soon found they were treating XMRV positive patients with CFS, Fibromyalgia, Chronic Lyme Disease, Multiple Sclerosis, Parkinson’s Disease, ALS, the list goes on.  XMRV research has concentrated around ME/CFS to date, but larger studies on the presence of XMRV in these other neuroimmune diseases are coming.
  • In the presentation they referenced a study where 65 Chronic Lyme Disease patients were tested for XMRV, and 100% came back positive. This was the most reactive group the WPI has seen. That is a higher rate than ME/CFS! 
  • Treatment: Three antiretrovirals showed promise amongst 45 compounds and 28 drugs approved for use in humans. Those three include Zidovudine(most know it as AZT), Tenofovir and Raltegravir. The study showed all two-drug-combinations showed efficacy against XMRV in vitro. (NOTE:  The only studies to date have been in vitro studies (i.e. in the lab) - there have been no patient clinical treatment studies for XMRV yet.)
  • TREATMENT: Dr. Brewer, an infectious disease specialist who’s spent much of his career in HIV but more recently in ME/CFS and XMRV, has used 2 and 3 drug combination antiretroviral treatments with a CFS/XMRV+ patient sample of 25. The results have been a mixed bag among the patients on ARVs anywhere from 1-9 months. The expected Herxheimer response occurred in some as would be expected. Symptom reduction has been reported, however majority reported feeling “about the same.”   She (Dr. Mikovitz)  has noticed a common theme of patients feeling better around 6 months, followed by a return of all or most symptoms. It sounds very similar to what happens to many on antivirals. She went on to ask herself and her team “how can we add immune modulating supplements to keep up the response beyond 6 months?” That might be the next step we see in antiretroviral (ARV) discussion.
Well, that still turned out longer than I intended, but I believe those are the highlights, for those of you with cognitive difficulties understanding the entire summary.  The bottom line is definitely optimistic for all of us with ME/CFS, as well as other neuroimmune diseases.

This post is a part of XMRV Bloggerama Day, intended to flood the internet with FACTUAL information about XMRV, to counter all of the junk that's been circulating recently.  Join in with your own post!  The information page even includes a template and links you can cut and paste, if you're not up to writing something yourself.

Thursday, January 20, 2011

Down But Not Out

Ah, not much energy for writing today - just a quick update.  After two straight weeks of good days (yes, two weeks!), I finally had a down day today.  Both of my kids have had mild cold symptoms this week and say everyone at school is sick, so I'm guessing this is a viral trigger that caused me to crash a bit today.  The beta blockers are still keeping my heart rate in normal range, but I had a sore throat and aches today.  Although OI is a big part of CFS, the immune dysfunction is still at its heart!

I am proud of myself, though, because I recognized the signs and gave up my plans.  Yes, it was a Plan B day.  I set aside the grocery list I'd made until tomorrow (I hope), went back up to bed, set the laptop aside, and picked up my book.  Then I set even the book aside, closed my eyes, and took a nap...then another in the afternoon!

Jamie and I had ourselves a little Lost marathon this afternoon, I got Five Guys burgers and fries for dinner (so bad but so good!!), and I'm heading to bed early.  Hopefully, tomorrow will be better, but even if it's not, Ken finally gets home tomorrow - hurray! - so I'll have some back-up if I need it.  I just hope the snow predicted isn't too bad.  I don't think I could handle more shoveling right now.

Dr. Mikovitz's Recent XMRV Presentation

Fellow CFS and Lyme blogger Lannie in the Lymelight recently posted an excellent summary of Dr. Mikovitz's latest XMRV presentation in California last weekend.  And here is Part 2 of her summary.  She did a great job summarizing the presentation, which includes more updates in XMRV research - check it out!

Tuesday, January 18, 2011

Movie Tuesday 1/18

Huh?  What?  It's Tuesday already?  Really?  Oops...just one of those weeks!  The kids had Monday off, then had a 2-hour delay this morning because of a snow/freezing rain mix (lovely), so even though it's almost mid-week, I'm still not feeling as if I've even started my week yet!  Morning's my only real productive time, so knocking two hours off this morning really kind of blew the whole day (not that I didn't appreciate the extra sleep!)

We had a wonderful time yesterday.  Some friends came to spend the day - two older teen brothers who both have severe ME/CFS and their mom - and we celebrated two birthdays.  The kids all had a great time together playing games, and their Mom and I had a chance to just relax and talk...and she totally understood that I needed to take a nap after lunch.  Now that's an easy guest!

So, I'm finally getting around to my weekly movie round-up...and we watched quite a few this weekend, as the boys needed lots of downtime after the party:
  • Earlier in the week, we all watched Hook, the 1991 return to Neverland film, starring Dustin Hoffman as Captain Hook and Robin Williams as a grown-up Peter Pan who must recapture his childhood in order to save his children.  It's a great movie with a talented cast, and the kids loved it.
  • Friday night, in preparation for the big events of the weekend, we stayed in and snuggled up with another good movie, Ironman, starring Robert Downey Jr. and Jeff Bridges, which Jamie had given Craig for his birthday.  The movie was much better than I expected, better than the typical superhero flick, in my opinion, with a unique backstory and plot, with Downey as a spoiled rich guy who owns a hugely profitable weapons manufacturing company that is intricately involved in the Afghanistan war. It had some interesting twists and turns, and we all really enjoyed it.
  • Ken and I didn't have time for any movies in this packed-full weekend, but we did squeeze in a couple of episodes of the final season of Saving Grace, one of our favorite TV shows.  It's not only an excellent cop show with a unique supernatural twist, but it's also set in Oklahoma City, where my husband is from.  We missed most of the last season this past summer and had been waiting for the library's DVDs to become available.  Only problem is that now we have 17 episodes to watch, and Ken is out of town this week!  Guess what we'll be doing next weekend?
  • After Crag's sleepover, both boys were pretty wiped out, not good for anything but lying on the couch and watching movies, so I picked out a couple of old favorites from the library for them.  They watched The Hunt for Red October while I napped on Sunday.  They knew Sean Connery from the Bond movies, and Jamie had enjoyed another movie based on a Tom Clancy novel, so they enjoyed this one, too.  Well, Jamie enjoyed it; Craig fell asleep in the chair halfway through!
  • Sunday night, the three of us ate dinner in front of the TV and watched another Robin Williams' classic, Mrs. Doubtfire.  The boys absolutely loved this funny and touching movie about a divorced Dad who is so desperate to see his kids that he pretends to be an old British nanny.  Definitely a good one.
  • After our guests left on Monday, we did the same thing again - chilled out with dinner and a movie in the family room!  We watched The Last Airbender, directed by M. Night Shyamalan.  The boys both really enjoyed the TV show, Avatar, that this movie was based on, so it was fun to see a favorite cartoon brought to life on screen in live action.  It was very well-done, with excellent special effects, and would appeal to anyone who enjoys fantasy, even if you're not familiar with the TV show.
Lots of movies this week, in between bouts of extreme activity!  Have you seen any good movies lately?

Saturday, January 15, 2011

A Busy Weekend

Whew, it's been a very busy weekend, and it's still only Saturday!

Ken is out for the evening, driving seven teenage boys to a ski mountain for snow tubing, to celebrate Craig's birthday.  Of course, I never could have managed this trip!  It's about a 90-minute drive each way, plus many hours at the ski place.  I felt bad about Ken having to do this on his own, but that's just the way it is.  I also felt relieved I didn't have to go because it would have knocked me'll probably knock Ken out, and he doesn't have CFS!

My shift begins tomorrow morning when all those teen boys wake up starving (as they always are at this age!).  I've made up 5 batches of pancake batter - hope it will be enough!

Big news yesterday...I went grocery shopping, for the first time since starting the beta blockers a week ago.  Last week, with Ken doing most of the work, my average heart rate during the shopping trip was 109 (105 is supposed to my anaerobic threshold, the limit after which Post-Exertional Malaise will be triggered).  Just walking slowly around the store, my heart rate was constantly above my upper limit, and, as you would expect, I was badly crashed the next day.

In contrast, I went yesterday by myself.  Even with pushing the cart and doing all the lifting myself, my average heart rate was 82, and it never went above 105 while I was in the store!  Interestingly, it spiked the highest after I got home and was carrying the groceries into the house.  At that point, it spiked up to 120's a couple of times, but since I was monitoring it, I was able to stop, sit down, and rest to bring it back down. crash today!  I felt fine.

In fact, this morning, I went to the first meeting of the newly re-formed Delaware ME/CFS and FM Support Group (it used to meet years ago, before I got sick).  As it turned out, only three of us came, but we all heard from others who are interested.  It's very difficult to plan a meeting for people with CFS...some of us can't manage afternoons and others can't handle mornings.  At least we all understand these limitations!  We're going to try a slightly later time next month, to try to catch both the morning and afternoon people.

I really enjoyed meeting these two women (one of whom I've chatted with extensively online).  I know lots of kids and teens around here with ME/CFS, but these were the first two adults I've met (well, one had FM, not CFS, but still...).  I'm really excited about this group and hope it grows.

So, I think it's time for me to pop in a DVD and relax.  I need to rest up so I'm in good shape for the onslaught of teen boys tomorrow morning!

Hope you're having a good weekend!

Thursday, January 13, 2011

13 Years Ago Today...

...our youngest son, Craig, was born!  And now we have two teenagers in the house.  It's hard to believe how fast thirteen years has gone by!

You're probably wondering how I'm doing after my big excursion out into the snow yesterday (I'm sure the suspense is killing you...). 

Well, I definitely did a little too much - big surprise!  I felt a bit crashed both last night and first thing this morning - not horrible, but tired and a bit achy.  But I took my medications after breakfast, including the beta-blockers, and within a couple of hours, I felt well enough to take a shower and...ready for this?...bake a pie for Craig's birthday!  Seriously.  Baking is usually something I can only manage on a really good day, but I managed fine today.  Both of our boys have been obsessed with banana cream pie lately, so I made a homemade black-bottomed banana cream pie - store-bought crust but still...

I'm a little tired now, but afternoons are always the worst time of day for me.  I feel like I'll be able to manage our dinner out tonight for Craig's birthday without a problem.  So far, so good...

Time to go whip the cream (too bad I won't be able to eat much of this dairy-heavy pie!).

Finding a Doctor for ME/CFS

I was getting ready to e-mail this information to an online friend, and I realized I get asked these questions a lot and should just post it on my blog!

If you're looking for a doctor who understands ME/CFS and knows how to treat it, try these three online doctor databases:
Finding a doctor who "gets" ME/CFS is so important - it can make a huge difference in your treatment and level of functioning.

Another good approach is to ask other ME/CFS patients in your local area for recommendations.  If you don't know anyone in your local area, try to find a support group or organization.  Here is a list of resources from the CFIDS Association, and when you join the Association, they send you a customized list of support people and groups in your area.

Also, feel free to trade recommendations and suggestions here in the comment section.

Hope this helps!

Wednesday, January 12, 2011

Snow Day!

You'll never guess what I was just doing!  Give up? 

...Helping to shovel snow!  Seriously!  For the first time in many years.  We got about 6 inches of snow last night, and the kids are off school today (6 inches is a lot for here!).

I know it's still too early to tell for sure if the beta-blockers are going to help me, but it's looking really, really good so far!

For several days now, I've been wearing my heart rate monitor and watching the effect of the beta-blockers, and it's been very encouraging.  Just getting dressed this morning (sans medication), my heart rate jumped up over 100.  After breakfast, I took the beta-blockers along with my other medications, then sat on the couch for a while to allow them time to kick in.  As before, within an hour, my resting heart rate fell from the high 90's to the mid-80's and below.

So, I got dressed in my cold weather gear and went outside to help Ken.  I started with clearing some snow off the cars, watching my heart rate carefully, then progressed to actually shoveling a little snow.  Our neighbor had used his snow-blower on the driveway this morning, so there was only a little bit left to clear, along the edges and near the cars.  I know this sounds odd, but I used to love to shovel snow.  In fact, I used to love any kind of exercise.

All told, my heart rate monitor tells me I was out there for a half hour, with an average heart rate of 92, and a maximum heart rate of 102 - very reasonable!  My limit for preventing post-exertional malaise from setting in (i.e. a crash) is 105.  So, we'll find out tomorrow whether that's true, but I also took a little walk yesterday around a local park - just about 10-15 minutes, but a big deal for me lately - and I felt fine this morning.

If this medication is going to allow me to be more active, that's like a dream come true!  Wish me luck...and I'll keep you posted!

Monday, January 10, 2011

Movie Monday 1/10

We had a lot to do this weekend, putting away all the Christmas stuff, but we did have a chance to watch some movies:
  • We watched Every Which Way But Loose, that Clint Eastwood classic, with the kids.  There's an awful lot of fighting in it for my taste, but we all enjoyed it.  The kids loved Clyde, Eastwood's orangutan sidekick, and we all laughed quite a bit.  Just lots of fun.
  • Craig went to a dance Saturday night, so Jamie, Ken, and I watched The Bounty Hunter with Jennifer Aniston.  It was a fairly typical romantic comedy with a new twist:  the ex-husband is a bounty hunter trying to pick up his ex-wife for skipping bail.  Again, nothing too earth-shattering, but amusing and fun.
Have you seen any good movies lately?

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

Saturday, January 08, 2011

Toni Bernhard to Appear on NPR Monday!

Just wanted to give you plenty of warning, so you won't miss this...

Our own Toni Bernhard, author of the wonderful book How To Be Sick, was interviewed on NPR.  Her interview will be broadcast on Monday, January 10's Morning Edition.  She's not sure exactly when during the show it will be broadcast, but if you miss it, you can listen to it on the Morning Edition website after the show. 

You can read my review of How To Be Sick at my book blog.  It's a wonderfully comforting, helpful book for anyone dealing with chronic illness...or any other difficult aspect of life, for that matter.

Congratulations, Toni!

Now it's time for me to listen to my own favorite NPR show, Wait, Wait Don't Tell Me (hilarious!).

Dr. Rowe's OI Article

Hurray!  A friend just e-mailed me a link to Dr. Rowe's OI article, that I mentioned in all my previous posts on OI.  This link is a downloadable pdf file, and the article is even more up-to-date than the one I have that I've been e-mailing.

I strongly urge you to download this article and read the whole thing.  It's written in easy-to-understand layman's terms and explains everything you need to know about OI - what it is, how to diagnose it, treatments, salt intake, everything!

Many of the symptoms we associate with CFS actually come from OI (CFS causes autonomic nervous system dysfunction which causes OI), so treating it can really help, whether you stick to just dietary changes or want to try various medications.  Share this article with your doctor.  Good luck!

P.S. Thanks, Denise!!!

Friday, January 07, 2011

Trying a New OI Treatment

(NOTE: If you don't know what I mean by OI or POTS or NMH or think OI doesn't apply to you, take a look at my previous post on Orthostatic Intolerance in CFS - OI is behind many symptoms of CFS and is treatable).

So, I've mentioned several times here this week that I've been stuck on the couch, with my heart pounding as if I were running all week.  I got a heart rate monitor for Christmas (a topic for another post), so besides feeling like my heart was going to burst out of my chest, I could see that my pulse rate just sitting up on the couch was around 100-105.  Standing up and doing something simple, like putting in a load of laundry, shot it up to 120.  I got out of the shower this morning and strapped the monitor back on, and my heart rate was 135!  It was like I was running when I was barely moving.

Although POTS this severe is not typical for me, this week got me thinking about my OI.  I drink lots of fluids and ingest huge amounts of salt (lots of V-8 this week and even mugs of chicken bouillon!), but it's been years since I've tried medication for OI.  I briefly tried Florinef years ago, which has worked miracles for my sons, but it rarely works for adults, and I didn't see any effect.  I've thought of trying SSRIs (a type of antidepressant sometimes used to treat OI), but that would require changing my sleep medications, and I can't do that.  My sleep dysfunction is the one aspect of CFS I have effectively treated, and I don't want to mess with my sleep!

That leaves beta-blockers.  I'd read about using beta-blockers for treating OI, and a friend was telling me on the phone this week that it has worked for her 15-year old daughter (whose POTS was so severe, she was fainting multiple times each day).  We share the same doctor, so I went to see her today, and brought along my hand-outs!  I always bring hand-outs to my doctor's visits.  She read the information I brought and said, "This is an easy one to say yes to." (as opposed to most of the treatments I ask her about!)

So, are you ready for this?  I picked up the medication and took my first dose in the car.  Within 1 hour, my heart rate had dropped by 25 points!  It was in the 80's for the first time all week, and sitting up at my kitchen counter, it settled down to about 75.  Unbelievable!  I was stunned.

I should emphasize that, of course, I need to give this new treatment more time before I draw any conclusions - there could be side effects I can't tolerate or maybe it won't affect how I feel very much.  But just from this one-day trial, I am very excited!

Here's what Dr. Rowe, CFS/OI expert at Johns-Hopkins, says about using beta-blockers to treat OI in CFS patients:

Beta-blocker medication " blocks the effects of adrenaline (epinephrine), and acts both to decrease the heart rate and to prevent the forceful heart contractions that may help trigger NMH."
So far, so good!  I am really hoping this works for me so that I can try to gradually increase my activity level, take short walks, etc.  My life has been pretty restricted lately.  I've been trying to get to the grocery store since Tuesday!  My husband finally went with me today and did all the pushing, lifting, etc. because we had run out of food.  Don't worry - I'll keep you posted!

P.S. Dr. Rowe's article on OI, referenced in my earlier OI post, is no longer available at the link I posted.  An updated version is available here for downloading.  I highly recommend you read this article and share it with your doctor, whether you are interested in trying medication to treat OI or would prefer to stick with non-pharmacological approaches (he provides details on all of this and more).  If you prefer, you can listen to Dr. Rowe's presentation on OI or view the slideshow.

Wednesday, January 05, 2011

Interesting Resources

Well, my day started out the same as yesterday - I woke feeling fine, got Craig off to school, and my pulse went through the roof again mid-morning!  I got out of the shower and strapped on my new heartrate monitor, and my pulse rate was 145!!  Those showers are killers.  So, it's another Plan B day.  Today I actually got so far as to plan meals for the week and make a grocery list but had to once again postpone plans to shop.  Fortunately, there are still enough Trader Joe's ingredients for two more dinners!

Just wanted to pass along a few resources that have come to my attention this week:
  • CureTogether is a website that surveys patients about symptoms and treatments for a variety of conditions, including ME/CFS.  Click on the tabs to see lists of symptoms, causes, and treatments reported by patients, a graph showing treatment effectiveness (not much on the high effectiveness side, of course), or to take their survey to add your own information to the data, which I did yesterday while stuck on the couch.  It's interesting, though I think they're using the term "treatment" loosely (it includes things like "rest more" and "avoid people who don't believe in CFS" as well as actual treatments).  Take a look for yourself.
  • NIH is starting a Listserve for ME/CFS, which they'll use to communicate new information.  Here is a blog post from Phoenix Rising that explains how to sign up (it's quick and easy).  Besides the benefit of getting the information, signing up will also help to show NIH how many people care about ME/CFS because they closely track participation.  I signed up.
  • For those battling Lyme disease as well as CFS, I read an excellent summary of the recent ILADS Conference on  Lots of interesting - though sometimes conflicting - information here on treatment approaches.
So, that's it for today.  I'm going to attempt a quick trip to the corner drugstore to pick up a prescription and more milk.  Not quite what I had in mind for today, but that's Plan B!

Tuesday, January 04, 2011

A Plan B Day

Well, I had to ditch Plan A today and go to Plan B.  Just one of those days.

I woke up feeling quite good - no obvious symptoms - and assumed I could go ahead with my plan to go to the grocery store.  The fridge and cupboards are pretty empty after our week away.  I got Craig off to school, did the dishes, and grabbed my laptop to check my e-mail.  That's when I noticed my heart was pounding.  I was just sitting on the couch (with my feet up even), and my heart rate was sky high, as if I'd been running!  I laid down and drank two huge glasses of V-8 juice, but my OI was still off the charts.  I didn't do that much yesterday, so I'm guessing maybe my immune system is going a bit berserk from being exposed to Ken's cold (he's still home sick).

So, it was onto Plan B.  This is actually one of the side benefits of living with CFS.  I've become a lot more flexible because I've had to.  In my past life, I liked to stick with my plans (some might even say I was a bit controlling), and I would get upset if I couldn't do what I'd planned.  Now it's a daily occurrence.  At first, I still got upset every time I had to change my plans, but not anymore.

Now, when I start to feel sick like I did this morning and realize I can't do what I want to, I just think to myself, "OK, what's my Plan B?"  Today, even though I initially thought I HAD to get to the grocery store, I thought about the alternatives.  I realized I had enough food in the house to cobble together one more dinner (thank you, Trader Joe's!), Jamie could take a ham sandwich tomorrow instead of his usual peanut butter and banana (no more bananas), and we could grab some juice from the drugstore on the corner.  There.  Done. 

So, I laid back on the couch, rested, and am hoping to get to the grocery store tomorrow...unless I have to go to Plan B...

Monday, January 03, 2011

Movie Monday 1/3

First Monday of the new year!  It wasn't back to our normal routine for us today, though.  Ken was home sick today with a bad cold - sounds like we left the same cold in Oklahoma with his dad, unfortunately.  The boys and I don't show any signs of it, but we have these super virus-resistant immune systems!  Jamie's having a rough day, though.  He was up until 10:30 pm last night struggling to finish a huge load of homework and make-up work from before the break.  He had worked for about 14 hours straight yesterday...and he is normally in bed by 8 pm!  He's paying for that push tonight.  Hopefully, an early bedtime and a good night's sleep will get him back on course tonight.

We watched two movies after we got back from Oklahoma this weekend:
  • Prince of Persia, which Craig got for Christmas form my sister.  This is a unique twist - it's a movie based on a video game instead of the other way around!  It's a classic action flick, though the plot had more depth than I expected.  Lots of slow-mo sword fights and jumping off buildings, with some computer-generated backdrops - you could definitely see its video game roots - but it was also well-acted, especially by Jake Gyllenhaal and Ben Kingsley.
  • Ken and I watched Salt, a spy thriller starring Angelina Jolie.  She plays a CIA agent who is accused of being a double-agent for Russia.  It was very good, with lots of twists and turns that kept us guessing.  It was a very complex plot, and by the end, we still weren't 100% sure that we understood exactly what had happened and why!  But we liked it.
Have you seen any good movies lately?

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

Sunday, January 02, 2011

Happy New Year!!

Wow, 2011.   Doesn't that sound bizarre?  After all, 2001: A Space Odyssey was science fiction!  We are living in the future.  Too bad we still don't have robotic housekeepers like on the Jetsons.  I sure could use a Rosie around here!

We enjoyed the rest of our visit to Oklahoma, especially the warmer weather.  Unfortunately, we seem to have left my father-in-law with a cold.  That's the problem with elderly people who rarely leave the house - they become very susceptible to infections....same is true for many of us, too, isn't it?

Believe it or not, our flights were all generally on time Friday, and we made it home at 11:30 pm New Year's Eve.  Our kids usually go to bed at 8 pm - staying up until 9 is a late night for them! - so this was incredibly late for all of us, but we managed OK.  I think it helped that our bodies were still on Central Time.  Since it was so late already, we stayed up to watch the ball drop in Times Square (first time ever for the boys!).  Everyone slept in Saturday, so we're all OK.  In fact, everyone but me is still sound asleep today, too at 9:30 am.  School tomorrow morning will be a very rude awakening!

I'm feeling OK, ready to get started on the new year.  We need to work on piles today - piles of mail, of laundry, of Christmas gifts still lying around the tree where we opened them last week, of piles on the kitchen counters and the coffee tables.  Whew.  The kids have a huge amount of homework, especially Jamie who is still trying to catch up from 3 sick days the week before Christmas.  So, lots of catching up today, then back to our usual routines tomorrow.

I hope you have all enjoyed the holiday break.  Here's to a happy and HEALTHY new year for us all!