Monday, December 26, 2011

Movie Monday 12/26

I hope all of you out there are enjoying the holiday season with your family!  We had a very good Christmas - nice and quiet, mostly just the 4 of us, the way we like it!  None of our family lives nearby, so we travel to see them before and after Christmas and enjoy a quiet Christmas Eve and Christmas Day.  This year, my mom and her husband joined us for dinner last night (they had to catch a flight out of Philly this morning), so that was nice, too.

With school ending last week for winter break, we finally had a little bit of time in the evenings to relax with some movies with the kids:
  • We watched the latest Pirates of the Caribbean: On Stranger Tides with the kids.  It was as good as all the others - lots of action, swashbuckling adventure, and plenty of humor.  Johnny Depp was born for this role!
  • We also watched Super 8 with the kids, and we all loved it.  It's set in 1979, about a group of kids who are filming a movie.  By mistake, they capture a horrible accident on film and when they watch it later (after it gets developed - remember those days?), they realize they have the answer to some questions about very strange things going on in their town.  No one else knows what they know, so it's up to them to save the entire town.  Ken said it was Goonies meets the aliens, an apt description!  The sci fi action and suspense are all very good, but the nostalgia is lots of fun, too.
  • Today, the kids watched Harry Potter: The Deathly Hallows, Part 2, one of their Christmas gifts from us (we got them the last 4 DVDs they needed to complete their Harry Potter collection).
How about you?  Have you watched any good movies lately?

Here's an "after" picture of our living room after opening gifts - a joyful mess!


Tuesday, December 20, 2011

Hope for the Next Generation

Sorry things have been quiet around here lately - just very busy with the holiday season.  We spent this weekend with my mom, her husband, and my sister and her family, with our traditional early Christmas celebration (plus two birthday celebrations).  It was lots of fun and great to see everyone.  I felt so much better than I did last year at this time - I was really just filled with joy at being able to enjoy my family and help a bit with meals.

Mostly, I had a blast playing with my niece and nephew (that's a photo of my mom with her four grandkids).  My nephew loved playing with the race car set we got him, and I had fun playing games with my niece and the rest of my family.  My 5-year old nephew wanted to learn to play jacks (I have retained my elementary school skills!), but he didn't really have the dexterity for it, so he came up with a new way to play - he threw the ball up and scooped up as many jacks as he could, while it was up to me to catch the ball!

At one point, I was out on the playground/beach area (my mom and her husband live in a resort community) with my mom and my niece, and my niece (who is 9) asked me about the heart rate monitor I was wearing.  That sparked a conversation about my illness that left me feeling really good.  I prefer to be very open and upfront about my illness, and I believe it is really important to be honest with kids (at a level they can understand, of course).  Kids can sense when something is wrong, and NOT talking about it just makes them feel more worried and scared. 

My sister, on the other hand, is one of the only people left in my family who doesn't really acknowledge my illness.  I can remember her asking me once in the past 10 years how I was doing - she just prefers to pretend everything is fine.  Once when my nephew asked about all the pills the kids and I were taking, my sister jumped in and said, "Those are vitamins."  I thought that was a rather dangerous thing to tell a little kid, that it's OK to take a dozen vitamins at once!  So, I explained that we had an illness, and our doctor gave us medicine to help us feel better.  I emphasized that we only take medicines that our doctors give us.

So, this weekend, when my niece asked me about my heart rate monitor, I said, "Well, you know that I have an illness, right?  Well, watching my heart rate helps me to keep from getting sicker.  If I keep it below a certain point, then I feel better.  So, this heart rate monitor helps me to be able to play more with you without worrying about it making me sick!" 

She was glad to hear that and told me that she'd learned about Lou Gehrig's disease in school.  So , I reassured her that my illness doesn't usually kill people, and that medicines help me feel better, and we talked about the differences between Lou Gehrig's disease and my illness.  She was fascinated by the heart rate monitor.  We had a great time playing on the playground equipment and taking a short walk together.

I think it's so important to talk to kids about our illnesses.  They're the next generation!  I usually reassure kids about the two things they are likely to worry about most: that this isn't the kind of illness you die from (I know that technically, some have died from CFS but mine is fairly well-controlled) and that it's not the kind of illness you can catch from me (again, I know that technically we don't yet understand the infectious component of CFS but we do know it is not passed along by casual contact - otherwise, a lot more people would have CFS). Maybe with some education and honesty, there will be less ignorance and more understanding in the coming decades.  My sweet niece and nephew (and my own kids and their friends) give me hope!

Tuesday, December 13, 2011

Public Testimony From Fall CFSAC Meeting

The government has posted links to all of the public testimony that was delivered at the recent meeting of the CFS Advisory Committee (CFSAC).  I haven't had a chance to read them all yet, other than those of a few close friends of mine, but what I have read so far has been moving, articulate, and heartfelt.  You can read them yourself at this link - just scroll down to the public testimony section.  You can also watch videos of the meeting or view slides of each of the presentations at that same link.  If you are particularly interested in issues related to pediatric ME/CFS, be sure to check out the testimonies of Alexander Lopez-Majano, Denise Lopez-Majano, and Joan Militello - they are all a part of our local group for families of kids and teens with ME/CFS.

As I mentioned here before, I also submitted testimony to CFSAC but did not get a speaking spot.  You can read my testimony at this blog post.

A huge thank you to all of the patients and family members who attended this meeting and gave testimony for all of us who were unable to.

Monday, December 12, 2011

Movie Monday 12/12

Whew - busy time of year.  Not much time for relaxing with movies.  We spent our weekend filling out scholarship applications, doing make-up work (Jamie - he missed a another week of school),  shopping, and finally getting our Christmas tree and decorating it!  But we did watch a couple of holiday-themed comedies on Saturday evening:
  • I had a few new movies from the library, but the boys voted to watch an old favorite, Planes, Trains and Automobiles.  It was the first time Craig had seen it.  We all laughed hysterically, of course!  The more times you see it, the harder you laugh because you anticipate all the good scenes and lines.  "It may not be pretty, Officer, but it gets me where I want to go." Afterward, Jamie said, "Laughter really is the best medicine!"  Must be because he felt much better on Sunday and went back to school today.
  • After the kids went to sleep, Ken and I opted for another light holiday flick, Four Christmases, starring Reese Witherspoon and Vince Vaughn.  It's about a couple who have avoided their families for years and end up having to visit all four parents (both of their parents are divorced) in one day - lots of dysfunctional families and sibling angst, along with an all-star cast.  It was about what you'd expect - light and fun, an enjoyable comedy with a heart.
  • Since all of our favorite TV shows are on hiatus, Ken and I have been watching a new series on DVD this week, Treme.  It's set in New Orleans after Hurricane Katrina, and I'd heard excellent reviews of it.  We are loving it so far!  We used to live in New Orleans and love the music and the visuals in the show, plus the acting and the storylines are good, too.  We found ourselves humming its theme song all day yesterday!  Makes me miss my favorite city.
Have you seen any good movies lately?

Wednesday, December 07, 2011

Summary of IACFS Meeting

The International Association for CFS/ME (IACFS) held its biennial meeting in Ottawa this fall.  Dozens of top CFS researchers reported on their scientific findings.  I wish I could attend something like this, but even the 4-hour NJ CFS Conference wiped me out last year.  So, I was thrilled to find this excellent summary of the IACFS Conference, written by the renowned Dr. Lapp.  He summarizes all of the key research studies in easy-to-understand language.  I highly recommend you take 10 minutes to read this - there is just so much good information here.  And it is all very encouraging - so much excellent scientific research going on in so many critical areas!

Monday, December 05, 2011

Movie Monday 12/5

It's been a few weeks since I've written a Movie Monday post because we've been so busy we haven't had time for movies!  We often watch a TV show on DVD before bed, but we rarely have time for a full movie.

As a result, I've been craving a movie lately, so I grabbed a couple off the shelf at the library last week.  We only found time to watch one (because OSU was playing against their arch rival, OU, on Saturday night, so I lost Ken!)...fortunately, it was a good one:
  • With Craig away at a sleepover, Ken, Jamie, and I watched The Sentinel, an action-packed thriller with an intriguing plot about the Secret Service (the service that protects the President).  For the first time in history, there is a traitor within the Secret Service and evidence of a plot to assassinate the President.  No one knows who to trust.  Michael Douglas plays a renowned agent who saved President Reagan from assassination, but when he fails his polygraph test, he becomes the main suspect and is taken off the service.  His main accuser is played by Keifer Sutherland who used to be his best friend.  Douglas' character is forced to go on the run until he can prove himself innocent.  In supporting roles, Eva Longoria plays a rookie agent, and Kim Basinger plays the first lady. It's a fast-paced, exciting thriller that keeps you guessing.  We all enjoyed it.
I'm hoping we can find a little time for some holiday movies in the next few weeks.  Of course, I will have to have my annual viewing of It's a Wonderful Life and cry!  Of the more recent holiday films, we really like The Holiday and Love, Actually.

I'm open to suggestions - what are some of your favorite holiday movies? 

Thursday, December 01, 2011

Support ME/CFS With Your Holiday Shopping!

Just a reminder (because I always forget!)...

While you are doing your holiday shopping online from your couch or bed (as I have been doing this week), here are some easy ways to help support ME/CFS research:
  • iGive - the classic. Choose your charity and choose from hundreds of online stores. I have mine set to donate to the CFIDS Association of America. iGive also sends you updates of how much you've earned for your charity.
  • GoodShop - same sort of thing - choose your store and choose your charity.  Between the two sites, you can find just about every online store you can think of.
Both sites also feature coupon codes (I got 50% off and free shipping yesterday at Lands' End!); the amount donated varies by store - usually between 1-5% of your purchase.

So, happy shopping and happy holidays!!

Wednesday, November 30, 2011

Videos from the 11/11 CFSAC Meeting

The Department of Health and Human Services has posted videos from the first day of the recent CFSAC meeting in Washington on their website.

I'm not sure why they still haven't posted videos from Day 2, but there is a complete set of videos on Youtube.  This Youtube Playlist lists all of the videos available there.

And here is the agenda from the meeting so you can choose which presentations you are most interested in watching.

Thanks, Denise, for the links!

Tuesday, November 29, 2011

The Invisible Wall


We have returned, like conquering heroes, from visiting my family in Rochester for the Thanksgiving weekend.  We finally made it up there, after a 2-year hiatus, the trip went well, and we are all still in one piece (more or less).

I thoroughly enjoyed spending time with my family, but, of course, it was tiring.  I managed better this time than past trips, though, which tells me that I am definitely doing a little better these days (probably due mainly to beta blockers and Immunovir).  I noticed I slept better; usually sleeping away from home is a huge struggle.

I have several different branches of extended family in Rochester, so we had some sort of large social event every day, from Thursday through Saturday, which was like a marathon for me!  A single social event can totally wipe me out.  But we have learned from past mistakes and scheduled in plenty of quiet, down time at my Dad’s house in between.  In the old days, we would schedule three different visits in a single day!  I also went up to bed by about 9 pm every night, and I think that helped, too.

I thoroughly enjoyed spending time with my family, but my illness forms an invisible wall that now keeps me somewhat separate from everyone else.  There are a couple of people who understand how challenging our daily lives are, but most of my family has no idea how profoundly our illnesses affect every moment of our lives.  Of course, I don’t want to talk about our illnesses at social events; that would only make people feel uncomfortable.  It’s just that I am living in a completely different world than everyone else.

It’s not that I am hiding anything on purpose or that they are uncaring.  In fact, all of my family knows about our illnesses and most are kind and compassionate, but, as we all know, it’s just impossible for anyone not living with these illnesses to fully understand how completely they affect every aspect of our lives.  So, even in the midst of talking and laughing with my family members, I still feel somewhat apart from them.

When everyone else is standing around the kitchen (as people tend to do at social gatherings!), I am sitting down, at about the height of their belly buttons.  While others are enjoying beer, wine, and lots of cheesy appetizers, I am sipping ice water and nibbling on plain tortilla chips.  We can’t attend gatherings in the afternoon because I need my nap in order to make it through the rest of the day.  I hated having to sit on the sidelines while the rest of my family played football on Saturday.

More than those physical differences, though, are the differences that come up during conversation.  My cousins were all trading stories about taking their kids to amusement parks, Disney World, water parks, etc.  Those kinds of places are like Kryptonite for someone with CFS!  They began making plans for all of us to meet up at Hershey Park next summer to spend a weekend together (it’s a huge amusement park and water park); I could never manage a single day there and Jamie probably couldn’t right now either.

My best friend from high school has taken up running…not just any running, but marathons!  She’s running 26.2 miles at a time, and I feel awful tonight because I went to the grocery store today.  She also talked about triathlons, how much fun spinning class is, her job, and all the travel and hiking she’s been doing.  Even talking about our kids is tough because Jamie is so far from a normal teen right now.  I love her – she is still my soul sister – but we seem to have little in common anymore.  It just makes me kind of sad, you know?

I don’t want to feel these barriers between me and my loved ones.  I’m used to being a what-you-see-is-what-you-get kind of person, but that’s no longer true.  People look at me and I seem normal and healthy, but I’m not.  I’m missing the emotional closeness that comes from shared experiences.  Maybe this is why I enjoy my book groups so much – discussing books is one thing I can do just like everyone else.

I hope this doesn’t sound whiny.  I didn’t mean to complain because I truly did enjoy our trip and loved seeing my family and my old friend.  I just felt separated from them by this invisible barrier all weekend so that my happy social occasions were slightly marred. 

And then I realized there were people I could talk to who would totally understand…thanks for listening.

P.S. I discussed similar issues with social events five years ago in my post, Living in a World Apart.  I guess things haven't changed very much!

Tuesday, November 22, 2011

Tuesday Tidbits

That's my way of saying that I don't have time for an in-depth blog post this week, so I'll just tell you what's been going on around here!  I should be either packing or filling our 13 medicine boxes, but I don't feel like it.  Why do today what you can put off until tomorrow?  I think that's my new motto (joining "better late than never").

Well, part of the reason I'm pooped out tonight is that I went into Craig's English class today and spoke about writing and reading.  Actually, I spoke to two 8th grade classes today and two yesterday, 2 hours each time, so that really wore me out!  It was fun, though, especially talking to the kids about what books they like and recommending others to them.  I used to do a lot of public speaking and teaching (adults) in my pre-CFS career, and I do sometimes miss that kind of interaction.  Contrary to what Social Security thinks, I could never manage a full day of this now!!

We had a busy weekend.  First, Jamie and I traveled to NYC on Friday, along with another local family, to visit our CFS doctor (well, the two boys had appointments, not me).  That was fun - we ate lunch at a great diner and browsed in a very cool (and very tiny) toy store before heading home.  But it totally wiped me out!  I wasn't even driving; I was just along for the ride and tried to rest on the way home.  By 6 pm, my body hurt all over - I felt like someone had beat me up!  And I was crashed on Saturday.

I rested up Saturday morning, then we went to a get-together with our local group of families whose teens have CFS.  Having illness in common is no longer all that relevant - we have become close friends with these other families who are all great people.  The kids hung out in the basement and played games, talked, and laughed a lot, and the adults relaxed in the living room and chatted.  It is just so fabulous to have this group of people who totally understand what we're going through.

On Sunday, Jamie went to see The Immortals AT THE THEATER with his two best friends.  This was a major event, as it's been a very long time since he's been able to go out to do anything social.  He loved the movie, but unfortunately, all those activities this weekend added up, and he was badly crashed by Sunday afternoon.  So, he's been home from school the last two days - Thanksgiving break starts tomorrow, so at least he won't be getting further behind.  He did get to school last week, but he's not making much progress catching up because even when he is in school, he doesn't have much energy left for homework or make-up work.

On the plus side, his new homebound tutor for English came by yesterday.  She has lots of experience with college application essays, so she is going to help him with that, as well as catching up in his World Lit class.  I spoke with the guidance counselor today, and she thinks she has found someone to tutor him in his other subjects as well.  He used to teach at Jamie's school and actually lives right here in our neighborhood, so this could work out well.  She also told me that the school administration approved Jamie to drop one of his classes (AP Economics) and graduate 1 credit short.  That is a huge relief to Jamie, as he was furthest behind in that class.

So, that's what's been going on around here.  Very busy, as you can tell.  We are planning to spend the Thanksgiving holiday with my family in Rochester, NY.  Hopefully, we will all be well enough to make the trip.  You may remember that we had to cancel our plans to visit on Labor Day weekend.  I know it will be tiring, but I am really looking forward to seeing my family, some of whom I haven't seen in 2 years!

If you are here in the US, hope you have a very enjoyable and healthy Thanksgiving!

Wednesday, November 16, 2011

Summary of Latest CFSAC Meeting

I plan to write a lengthy post on school accommodations for kids with ME/CFS but am still pretty run-down and just not up to it yet.

In the meantime, I thought I would post a link to an excellent summary of the latest CFS Advisory Committee meeting (for the U.S. Department of Health and Human Services) that took place last week.  As you may recall, I had planned to go but with Ken traveling, me not feeling well, and being denied time for public testimony (they had more speakers than they could fit in), I did not go.  They didn't videocast the meeting this time due to budget cuts, so I really had no idea what happened at last' week's meeting.

Fortunately, Jennie Spotila, Board member of the CFIDS Association and ME/CFS patient (and friend), posted a clear and comprehensive summary of the meeting on the Research 1st website.  Jennie's summary is brief and easy to understand, so I encourage you to take a look.  While you're there, the blog has also posted several different people's testimony from the meeting.

I was highly disappointed to see that the CFSAC meeting did not address any issues related to pediatric ME/CFS.  As you may recall, our family - and many others - made a special effort in May to attend the CFSAC meeting in person to bring attention to this neglected and important issue.  By the end of that meeting, the committee said they'd been very impressed by all the testimony about the plight of sick kids and teens and that they would devote part of their next meeting to hearing from pediatric experts and learning more about it.  Now, I may be jumping to conclusions - perhaps it was briefly mentioned or tabled until the next meeting - but it appears that the topic was not discussed.  It required a lot of time, money, and precious energy  for all of us to attend that meeting, and it is discouraging that nothing seems to have changed.

OK, that's it for tonight.  I'm not badly crashed this week anymore (i.e. in bed) but am still feeling really run-down and achy.  Jamie is back to school this week (hurray!), but now Craig is home sick.  It seems like "just" a cold he picked up at school, but that tends to knock him out completely.  Always something with this exciting illness, isn't it?

Monday, November 14, 2011

Movie Monday 11/14

We had a rough week here last week.  Jamie was home from school from Tuesday on, and I was badly crashed from Thursday on.  Maybe we were both exposed to a virus or something.  I can drive myself crazy trying to figure these things out!  My mom and her husband came to visit for the weekend.  It was great to see them, and my mom took over the kitchen, which I really appreciated!  I had been too sick to even get groceries, so she planned meals, went to the store, and did most of the cooking.  What a relief!

I'm doing a little bit better today, though still not in great shape.  More importantly, Jamie went back to school today and is even doing a little homework now.

Despite all the sick days, we didn't watch many movies.  Jamie read 5 books last week (!) and he and I watched some TV shows On Demand during the day and on DVD with the rest of the family (mainly Bones, The Big Bang Theory, NCIS, NCIS-LA, and some episodes of Psych).  We did fit in one movie, on Thursday night since the kids were off school the next day:
  • We finished off our X-Men trilogy that some friends lent us with X-Men: The Last Stand.  It was pretty good, like the other X-Men movies - lots of action and battle scenes in this one but also some interesting plot elements, where a "cure" has been developed for people with mutations (like the X-Men).  The politics of these movies have been interesting because you can see similar trends and controversies in some of our own current politics, mainly in the fear of people with differences.  All in all, it's been a good series, and the boys really enjoyed it.
Have you seen any good movies lately?

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

Wednesday, November 09, 2011

My CFSAC Testimony: Educational Support

It's been a very busy week here, with Jamie back on the couch and my husband out of town, but I thought I'd just take a moment to share my CFSAC testimony with you.

The CFS Advisory Committee to the Department of Health and Human Services (U.S.) met yesterday and today.  I had requested a speaking slot, after speaking for the first time at the May meeting about the plight of kids and teens with ME/CFS.  I was hoping to go in person but figured I could call in my testimony if I wasn't able to travel to DC.  Unfortunately, I didn't get a speaking slot this time - they had too many people requesting time (which is a good problem to have - our invisible community is becoming more visible!).  Then, we found out last week that my husband had to go out of town, so my going to DC became impossible anyway.

But I did turn in my testimony, and I think it will be included in the written copies handed out to CFSAC members.  Our local parent group had agreed to focus our testimonies this time on the difficulty of getting appropriate educational support for kids and teens with ME/CFS.  I have been working on a more detailed post about 504 plans and IEPs and hope to post that later this week.  In the meantime, here is my (unheard) testimony:


My name is Sue Jackson, and I have had ME/CFS since March 2002.  Both of my sons, ages 13 and 17 have it also – they’ve both been sick for seven years.  I spoke at the May CFSAC meeting with my family about the need for attention and research on pediatric ME/CFS.  Today I would like to focus on the educational challenges for children and teens struggling with this illness.

Both of our sons have managed to keep up with their classmates in school throughout their illnesses, but my husband and I fought many battles with school administrators and teachers to afford them this right.  Our sons are both very bright and are good students, and that has helped as well.  We have often asked ourselves, “What happens to kids that struggled with school before they got sick?  Or kids whose parents aren’t as able to fight for them or who aren’t as well-informed?”  The answer is that those kids, as well as kids who are too severely ill to go to school, are getting left behind.

Through much of the past 7 years, our sons have been able to attend school at least part-time, thanks to treatment for Orthostatic Intolerance.  In working to get them the accommodations they needed at school, we encountered many barriers along the way, most of them due to a lack of knowledge about ME/CFS.  One school nurse actually called our pediatrician and yelled at her for 45 minutes, saying she didn’t believe the doctor’s diagnosis of CFS because “he seems fine when he’s in school,” obviously unaware that  many kids (and adults) experience good days and bad days with ME/CFS.

We have run into teachers that simply refused to work with our son, saying that if he was sick, he needed to be on 100% homebound instruction, despite the fact that he was sometimes well enough to attend school.  When we had the backing of a supportive principal, those teachers were forced to comply with his accommodations, but in some cases, we just had to work around those teachers.

Our son’s 5th grade teacher interpreted his newly severe cognitive dysfunction as behavioral problems, telling us that our normally obedient, straight-A student was “a defiant, cheating, disobedient child.”  In all cases, we persevered, gaining support wherever we could, from principals and guidance counselors and in some cases, calling district-level or state-level administrators.  We educated ourselves on the law and what our sons’ rights were.  All of this, and especially the hours-long, often combative meetings, frequently resulted in a relapse of my own symptoms.

We’ve actually been lucky.  Our stories are nothing compared to what we’ve heard from other parents.  Some kids with ME/CFS have outright been denied an education, even by district and state levels.  We know of many cases where parents have had to hire their own tutors and/or lawyers.  In the worst cases, parents trying to ensure an education for their very ill children have themselves been vilified, with school administrators calling Social Services with threats of removing the children from their homes.

With all of the challenges that these poor kids face in just getting through each day with the disabling symptoms of ME/CFS, it is appalling that they also have to fight for their right to an education.  Many of these battles could be prevented if school nurses, teachers, and administrators were properly educated about ME/CFS.

In March 2001, Dr. David Bell wrote an excellent article on CFS for a publication called School Nurse News that was then sent out to school nurses around the country by the CFIDS Association, sometimes accompanied by Dr. Bell’s appearance at regional meetings for school nurses.  That was 10 years ago and very little has occurred since then to inform educators and support personnel about the challenges of pediatric ME/CFS.

As I mentioned in my May testimony, we desperately need research into pediatric ME/CFS, including a full-blown population study to estimate the number of kids and teens suffering with this illness.  In addition, we need strong efforts to educate school personnel and the public about the severity of ME/CFS, its incidence in children and teens, and what kinds of support are needed to get these kids the education they each deserve.

Monday, November 07, 2011

Movie Monday 11/7

We had a busy but very nice weekend.  My dad and his wife were visiting from out of town this weekend.  It was good to see them, as always, a bit tiring, though they are easy guests. 

Jamie actually played soccer on Saturday!  Only the third time this season.  When he plays, he's been playing the back defensive line so he doesn't have to run as much, but the coach put him on the front line as striker for a few minutes, and he made an awesome goal!!  We were so happy for him - he was on top of the world.  Yes, he has paid for that exertion a bit, though he did make it to school today.  He's feeling crashed tonight, so we're going to watch a movie and chill out....

OK, I'm back!  So, movies...a kind and generous friend read here recently that Jamie was enjoying the X-Men movies, so they lent us a trio of X-Men movies, and we have watched two so far:
  • Thursday evening, we watched X-Men, which I guess was the original movie of the series.  I didn't think I'd enjoy this, but I have to admit it's pretty good.  It's classic good guys versus bad guys during a time in the future when there is a growing population of "mutants," people born with special powers.  Some people fear all mutants and want them rounded up and locked away.  The X-Men are a group of mutants who have banded together to teach younger mutants and to try to keep the world safe and peace at hand.  It was engaging, with lots of action and adventure.
  • Tonight, when Jamie decided he was too crashed to do any homework, we watched X-2, the sequel which follows the story as the lead bad guy (a mutant himself) launches an evil plot to get rid of all humans so the mutants can take over.  Some of the backstory and convoluted plot are a bit confusing, but we figured it out and enjoyed it.
Have you seen any good movies lately?

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

Thursday, November 03, 2011

ME/CFS Groups on Facebook, Part 3

So, I heard some of you were still having trouble accessing some of the existing ME/CFS groups on Facebook that I included in my first post on the subject.  I think we have worked out the problems now!

People said they couldn't find the ME/CFS - Pacing with a Heart Rate Monitor group, so I worked with the administrator of the group, and he decided to change it from a Secret group to a Closed group (with the current members' agreement) - this will still protect the privacy of its members (posts are visible ONLY to members of the group) while making it possible for people to find the group.  So, if you are interested in joining the Heart Rate Monitor group, use this link - it should (hopefully!) work now to take you to the group's page - all you will see is the group's name.  Just click on the "request to join" button, and the administrator will add you to the group.

As for the ME Mums and Dads group (for parents who have ME/CFS), the administrator decided to keep the group classified as Secret which means it doesn't show up in searches (and apparently, the link I provided doesn't work).  So, here's what we'll do.  She made me another administrator for the group.  If you are a parent with ME/CFS who wants to join this group, e-mail me at jacksonde at comcast.net (I wrote it out that way to avoid getting spammed), and we will work together to help you find the group and get added to it.

So, hopefully, that will solve the problems - sorry for the inconvenience!

Tuesday, November 01, 2011

The Joy of Celebrations

A few years ago, I wrote a blog post about joy and how ME/CFS has helped me find more joy in everyday things.  I planned to kick off a series of posts about things that bring me joy, and I wrote The Joy of the Outdoors and The Joy of Friendship, but then the project sort of fell by the wayside.

All of our Halloween fun yesterday made me realize that I haven't written about celebrations, which I think are a vital element of joy in any life!

I came by my love of celebration from my mother.  When I was a kid, we celebrated everything, big and small, and I loved the atmosphere of joy and festivity.  My mom was, and still is, a major party animal, so I learned from the best!  When I had kids, I knew I wanted to do the same thing for them.  My kids love our traditions of celebration, and now that we are dealing with chronic illness, they are even more important, a way of injecting joy and fun into our lives, even (especially) when things feel lonely and dismal.

Of course, we celebrate the big holidays, though we've had to scale back a bit since CFS.  We now focus on certain elements of each holiday that are the most important to us - at Christmas, that's decorating our tree together and getting together with our oldest friends for a cookie decorating/grinch watching party (we now buy premade cookie dough!).  On Halloween, our whole family gets dressed up, often with a group theme, and goes around the neighborhood trick-or-treating (I usually just hit the two nearby cul-de-sacs).  We celebrate New Year's Eve at 8 pm since the kids can't stay up late (and we used to celebrate with their grandma who had Parkinson's and also couldn't stay up late), but they love our traditions, with sparkling juice, lots of noisy confetti poppers, and caps thrown all over the driveway.

We celebrate the little holidays, too.  We always decorate the house - over the years, we've collected themed window stickers, decorations, and holiday-themed projects the kids made when they were little.  For Valentine's Day, we give the kids little treats in the morning, hang hearts with messages written on them from their door frames while they sleep, and celebrate with a simple chocolate fondue in the evening, dipping in chunks of fruit, pretzels, and graham crackers.  One year, I even put little edible groundhogs into the kids' oatmeal for Groundhog Day!

We don't need a holiday for an excuse to celebrate.  Once or twice a year, I make our favorite enchiladas and we have Mexican Night, with a colorful serape on the table and a special orange-mango fizzy drink.  We celebrate the start of summer by going with friends to play in a creek after school lets out.  And, of course, there is always a party when we visit their grandma (my mom)!

If Jamie has had a bad week (or month) and has been stuck at home for a while, I surprise him with movies from the library or a favorite treat from the local ice cream dairy or bakery.  Celebrations can be incorporated into everyday life to add an extra jolt of joy to even our restricted lives.

So, next time you are having a bad day or week or month, find a reason to celebrate and insert some extra joy into your life! 

What are your favorite ways to celebrate?

Friday, October 28, 2011

Managing a Herx Reaction

Well, it's a real kick in the pants when you are struggling with a disabling illness and then its treatment makes you even sicker, but that's what many people with Lyme disease have to deal with, as well as some people with ME/CFS being treated with antivirals.  It's called a Herx reaction, and, as we have seen recently with our son, it can be completely incapacitating.

What exactly is a Herx reaction?  Well, for starters, the word "Herx" is a shortened nickname.  Here's one of the clearest explanations I found on Lyme Disease Blog:
The Jarisch-Herxheimer reaction (or Herx for short) is an inflammatory response to antibiotic treatment for certain diseases (although some non-antibiotic treatments can produce the reaction). It’s also referred to as a “healing crisis” or “die-off,” meaning a detoxification of dead or dying bacteria and other pathogenic organisms in the body.

....A person with one of the Herx-causing infections has a certain number of tiny foreign organisms in their body. The number of infectious organisms can be in the thousands or millions. Each individual organism is made up of its own cell with its own internal structure and contents. If that cell dies through an attack by the immune system or an antibiotic drug, it bursts open and releases its contents. Millions of cells bursting at the same time introduces a significant amount of cellular material in the body. These spilled contents cause the Herxheimr reaction, When the spilled contents are cleared from the body, the reaction stops.
Historically, the theory has been that the reaction is caused by dying organisms releasing endotoxins.  Recent experimental research suggests that the rapid and massive overstimulation of the patient’s immune system causes the symptoms. The immune system’s job is to recognize and attack foreign antigens in the body. When dead organisms spill their internal contents, a huge number of foreign antigens become present all at once. The body reacts by releasing immune system modulators (or cytokines) (e.g., Interleukin 6, Interleukin 8, and tumor necrosis factor, among others). These cytokines are what cause the fever, chills, and low blood pressure. Either way, the body gets assaulted and fights back.

As the blog post explains further along, the phenomenon was named with respect to syphilis treatment.  You may or may not know that syphilis has a lot of similarities to Lyme disease; both are caused by a type of bacteria called spirochetes which can be very difficult to get rid of and tend to leave the blood stream and settle into joints and tissues.  Given the explanation above and the immune system's role in a Herx reaction, it makes sense that some people with ME/CFS being treated for viral infections or yeast overgrowth also experience Herx reactions; as is typical, our immune systems over-react.

Unfortunately, we have had to become experts in Herx reactions because our 17-year old son is going through such a rough time right now.  Treating babesia and bartonella (two other tick-borne infections that Jamie has as well as Lyme) can also cause Herx reactions, and the immune dysfunction just makes it all that much worse.  That blog post I quoted from above says that Herx reactions can last days or sometimes as much as two weeks, but Jamie - and many others with both CFS and Lyme - has experienced a severe worsening of symptoms that has already lasted many months.

He has been so totally disabled by Herx reactions that we have become desperate to find some way to help him, so I've done a lot of research and have talked to a lot of people.  Here is a list of some remedies that I've heard about to lessen Herx reactions, from our doctor, our dietician, various articles, and other people:
  • Burbur and parsley drops (the link is to the cheapest source I could find)
  • Chlorella (our dietician recommends King Chlorella brand)
  • Milk thistle (my son already took it, but I've increased the dose; it helps the liver to work more effectively, filtering out toxins; it's essential for anyone who takes a lot of supplements and/or medications)
  • Extra soluble fiber (see UPDATE below)
  • Water and lemon juice (helps the body to become more alkaline)
  • Epsom salt baths (though people with ME/CFS have to be careful that the bath isn't too warm - it should be below body temperature to avoid triggering a bad Orthostatic Intolerance response)
  • Heat treatments, like sauna and hot tubs - these should be avoided by anyone with ME/CFS because the heat dilates blood vessels, making OI much worse and making you feel very sick.
None of these things helped our son very much at first (some, like Chlorella, we've just added).  No matter what we did, he was still completely incapacitated while on antibiotics.  Lyme experts say that there is no benefit to just enduring a severe Herx reaction; in fact, if your body can not clear the toxins, then you aren't making any progress against the infection(s). With this in mind, I had yet another phone consultation with our Lyme doctor this week, and we decided on a new plan. Even at a very small dose, he was still severely ill, so we have decided to go VERY slowly and gradually with the antibiotics.  The one he is currently trying is doxycycline, so he went completely off of it until the Herx symptoms cleared and he started to feel better (for him, 5-7 days), and now he is taking just 1 pill (100 mg) every 3 days (normal dose is 2 pills each day).  Once he seems to tolerate that fairly well, we will increase it to one pill every two days, and so on.

So far, this seems to be working.  He was able to go to school every day this week, though he is still very low in energy.  He's been coming home at 3 pm each day, completely exhausted, unable to do any homework at all.  Believe me, this is a huge improvement over where he was!

I'll let you know how it goes, but I thought I'd share our experiences and learnings with you because I know others are struggling with these same issues, either with Lyme or with antiviral treatment for ME/CFS.  I'd love to hear your experiences, too, and if you know of any other ways to lessen Herx reactions.

UPDATE 11/9/17:
I wrote this post five years ago, and my son is still struggling with Herx reactions and is still very sensitive to even small doses to treat his three tick infections...though he has made tremendous progress in that time and can now live a much more active, full life. We have learned some more things in the past five years for managing Herx reactions:
  1. Adjust the Dose. Your first line of defense should be to reduce the dose of whatever you are taking to kill the infections (antibiotics, antivirals, or antifungals, whether prescription or herbal) until the Herx is tolerable. As I said above, it does no good to suffer through a severe Herx - "no pain, no gain" doesn't work here! You need to give your body a chance to keep up with detox and get rid of the by-products of your treatments. My son switched to a 100% herbal protocol years ago and hasn't had any antibiotics for tick infections in over 4 years now, but he still reacts strongly to the herbal treatment. You may have to go super-low dose, as I described above for my son, taking only 1 pill every 3 days (or for him now, just 1 drop of the herbal blend a day when 30 drops a day is standard), but you have to find the "sweet spot" for you - where you can tolerate the treatment and still function. Then, as you adjust and feel better, you can very slowly and gradually increase the dose, but again, only as much as is tolerated. In this way, you will make slow but steady progress and still be able to function.
  2. Help the Liver and Increase Anti-Inflammatories. We read about these two supplements on a blog post at Lilac and Lyme, and they have helped my son considerably. He takes extra circumin (the active ingredient in turmeric, a potent anti-inflammatory - our dietician recommended Meriva brand) and dandelion root when his Herx symptoms flare up. He was already taking both of these for ME/CFS (me, too), but now he has an extra bottle of each and takes 2-6 extra capsules of each on days when his joint pain or other Lyme symptoms get bad. He says these two extras have really helped! NOTE: It is best for people with ME/CFS not to take TOO much dandelion root because at higher doses, it can act as a diuretic and cause fluid loss (which is very bad for OI and will make all symptoms worse).
  3. Help Your Body to Eliminate the Toxins. One way to help your body with this detox process and manage the Herx reaction is to help your body eliminate the toxins quicker. You want to help clear out all the dead bugs and their by-products. Our dietician recommended the following on alternate days for 2-3 weeks or until you feel better, in between meals and meds (be sure not to take these close to food, medications, or supplements because they will sweep out everything in its way, not just the bad stuff. Also be sure you can get to the bathroom!):
This combined approach, with the new treatments combined with the older ones, keeps my son functioning well most days.

What works best for you for Herx reactions?


Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

                                                      

Monday, October 24, 2011

Movie Monday 10/24

Well, last week was another in a long string of rough weeks.  Jamie was completely incapacitated again and missed another full week of school - that's 16 days since Sept. 1.  The good news is that he went back to school for a partial day today (though only because we stopped his Lyme meds again).  I talked to the Lyme doctor today and think we have a plan that might allow him to move forward in his treatment without being so totally crashed.  We'll see - I'll keep you posted and will write more about our plans later this week, as I finish figuring it out myself!

So, with him home and so horribly crashed last week, he watched a lot of movies on TV.  With Halloween approaching, a bunch of channels were showing back-to-back horror movies, so he watched a bunch of those and scared himself!   I'll try to remember some of the movies he watched (I was in the room to keep him company but trying to get some tiny bit of work done!):
  • FX channel was showing non-stop scary movies last week.  I don't remember all the titles - some were just slasher films.  Jamie watched Perfect Stranger with Halle Berry, a good thriller that Ken and I had watched before with a great twist at the end. 
  • I came home from Craig's soccer game to find Jamie totally freaked out after watching a TV series, American Horror Stories, that he said was really scary.  He swore he wouldn't watch it again but then amended that the next day to say, "only during the day when someone else is home!"
  • He wanted me to watch Shutter with him, a spooky ghost story he'd seen before and really liked, about a newlywed couple who move to Japan and start seeing ghosts.  He was right - it was good.  I prefer ghost stories to slasher/horror-type movies.
  • As a family, we watched some more episodes of our favorites on DVD, Bones and The Big Bang Theory.  By evening, Jamie was too wiped out for a full-length movie.
Have you seen any good movies lately?  Any spooky suggestions for Halloween season?

Friday, October 21, 2011

ME/CFS Groups on Facebook

OK, I think we have found a solution to the problems you've been having accessing a couple of groups on Facebook.

As I posted last week, there are two Secret groups on Facebook for people with ME/CFS - ME Mums and Dads and ME/CFS - Pacing with a Heart Rate Monitor.  Apparently, the links I posted here didn't work, I think because they are Secret groups (that just means the groups don't show up in searches on Facebook; the new groups I set up for teens and their parents are Closed but not Secret, meaning no one can see the posts unless they are members, but they do show up in searches).  Sorry about the problems - the links work fine for me because I am already a member of both groups!

Anyway, after much debate and trial, we can't seem to find links that will work, so it appears the only way to get into one of these groups is through someone who is already a member.  So, let's try something different:

If you are interested in joining the Pacing with a Heart Rate Monitor group, you can send a Facebook message to either Barnaby Fotheringham  or Lee Lee Ingram, who are both administrators of the group.

If you want to join ME Mums and Dads (for people who have ME/CFS and are parents), you can send me a Facebook message at Sue Boulter Jackson.  Just one thing about this approach, and I hope you won't think me rude!  I generally do not "friend" people unless they are family or close friends that I know in person.  I have made a few exceptions over the years, for people I have gotten to know very well online, but generally, with too many friends I don't actually know, it just becomes too overwhelming for me to keep track of.  I do, however, actively participate in all of these Facebook groups, including our two new ones for teens and parents of sick kids.  Believe me, between my three blogs and all of these Facebook groups, I have my hands full!  I do hope you understand and don't think me rude if I don't accept your friend request.

Ok, let's try it this way - hopefully, those of you interested in joining these two groups will be able to now. 

Thursday, October 20, 2011

Cancer Drug May Help ME/CFS Patients

Just wanted to take a moment to tell you about some very exciting news.  A recent study in Norway showed that a drug used to treat cancer, Rituximab, improved symptoms in 10 out of 15 ME/CFS patients.  Two of the patients were completely recovered and able to go back to work!  Here's an article from New Scientist that provides a good overview of the study. Apparently, the drug works by destroying B cells in the immune system...which makes sense since immune system dysfunction is such a central part of ME/CFS.

We should know by now not to get TOO excited over preliminary research, but this is a good starting point that will hopefully be followed up by some similar studies here in the U.S. and elsewhere.  The great thing is that this is a drug that is already on the market, approved to treat lymphoma (they figured out it might help with ME/CFS when they treated a lymphoma patient who also had ME/CFS and he got much better), so if it does work, it is immediately available.

On another topic, the two new Facebook groups for teens with CFS and their parents are both going really well.  The teen group has 10 members so far, and the parents' group is already up to 19 members, with lots of great discussions going on at both.  So, if you fit it into either of these categories, please join us!

And, I am aware of the problems with the links I posted to the ME Mums and Dads group (for parents who have CFS) and the Pacing with a Heart Monitor groups.  The problems are due to the fact that these are Secret groups (the two new ones I set up and the LDN group are Closed groups but not Secret), and I am working with the administrators of both groups to try to figure things out.  As soon as we do that, I will post new links.  A huge thank you to those of you who let me know the links weren't working!!  They work fine for me - because I am already a member of both - so I wouldn't have known of the problems without your help.  Stay tuned!

Monday, October 17, 2011

Movie Monday 10/17

Well, we did manage to have a nice, relaxing weekend.  Jamie is still crashed from over-doing on Saturday (playing soccer, watching a HS football game, and going to his dance), but I do think this is a simple case of over-exertion and am hoping he will recover soon.

We didn't watch many movies last week - mostly just TV shows - but Jamie and I watched one on Friday night:
  • We watched X-Men Origins - Wolverine which Jamie had seen before.  He really wanted to see it again - I wasn't too excited about it but gave it a try.  I knew nothing at all about the X-Men before this movie, but apparently, it is the story of how Wolverine got his start as a superhero.  I have to admit, it was a pretty good movie - lots of action, of course.  And I admit, I am now a bit curious about the other X-Men...
How about you - have you seen any good movies lately?

(If you are interested in what our family has been reading this week, check out the Monday post at my book blog.)

Sunday, October 16, 2011

New Online Groups for Teens and Parents!

For weeks now, I've been meaning to set up a couple of new Facebook groups: one for teens with ME/CFS (and similar illnesses) and another for their parents.  I have really benefited from participating in other ME/CFS-related Facebook groups, but there didn't seem to be anything available for these two groups.  I finally did it this morning, after recent events made it feel urgent.

So, first the links and then some details:

Click here for teens with ME/CFS and other similar illnesses

For  parents of kids and teens with ME/CFS and other similar illnesses.


I get e-mails and blog comments every single week from teens and from parents who are desperate to connect with others in the same situation, but they don't know anyone else in their local area.  In the past, I have addressed these notes individually, corresponding with people and trying to set them up so they can correspond with others.  But I can't do it all, and with Facebook groups, it is easy to find lots of other people in your same situation.

Many of you will remember that I set up a local group here in Delaware last year for kids and teens with ME/CFS and their families.  This local group (with families from NJ, PA, MD, DE, and even NY) has been a huge success, and we have all benefited by getting to know each other and having our own little support network.  Our families get together for casual picnics and gatherings, the kids have all become great friends, and the moms often get together for lunch.

A couple of weeks ago, when Jamie was doing really badly, I sort of hit bottom emotionally and just felt like I couldn't take this any longer.  I was sitting in a medical facility with Jamie, waiting (hours) for his IV, and I was ready to burst into tears.  I opened my laptop and thought, "Who can I talk to who will understand?" I didn't want to burden any of my healthy friends or family - it just makes them feel bad.  Then I realized I could reach out to our local group of moms.  I sent an e-mail, explaining how bad things had been and how I felt like I was losing it.  Within moments (literally), the nurse popped her head into our room and said, "Someone is here to see you - can I bring her back?"  It was one of the moms I'd just e-mailed!  She'd been in the grocery store next door when she saw my note on her phone and immediately came over to see us.  She brought me into the hall, gave me a big hug and let me cry, then ran back to the store to get Jamie some Gatorade.  In addition, within 10 minutes, I had e-mails from all the other moms, telling me they understood and offering all kinds of support.  I was totally blown away.  I want other parents to have this same kind of support.

As for teens, Jamie went to his Homecoming Dance last night at school.  He lasted only 2 hours and came home in tears.  He wrote this poem this morning and posted it on his regular Facebook page:


"How many times can I break till I shatter." -O.A.R
Trying to scream out the frustration swirling through my mind but I lack the energy.
My last high School Homecoming and
I'm trapped in my own body.
Oh how I wish to be free,
... the things I'd do
the person I'd be
If only I were free.


 And I realized that he needed the same kind of support, even when he's not able to get together physically with our local group.

SO!  I set up two new Facebook groups this morning, one for teens and one for parents.  Turns out it's pretty easy.  If you're not familiar with how these work, here's a quick overview:

You do have to join Facebook to participate, but most teens and many parents are already on there anyway.  Both new groups are Closed groups, which means that no one can read what's posted in the groups unless they are a member, postings will not appear in search engines, and I will approve the members.  Once you join a group, you can post on the wall, upload photos, share links - all the stuff you would normally do on Facebook, except that no one will see it except the members of the group.  You do not have to be "friends" with everyone else in the group - just being members of the same group allows you to participate.  This has been great for me because I limit my Facebook friends and my regular page to just family and close friends (otherwise, it's too much for me to keep up with), but I love to interact with other people with ME/CFS in various groups (see below).

So, once again, here are the new groups:

Click here for teens with ME/CFS and other similar illnesses

For  parents of kids and teens with ME/CFS and other similar illnesses.

I specifically used the term Teens, but younger kids are OK (Facebook's official guidelines say you have to be 13 to join, but I know younger kids sometimes do - we let Craig join at 12).  And slightly older is OK, too, especially for those still living at home who may feel younger than their actual age (I know how CFS can affect kids!)  

There is already an existing page on Facebook for Young Adult Patients with ME CFS, Lyme, Fibromyalgia etc. and also a page for the Association for Young People with ME.  


The two new groups encompass not just those officially diagnosed with ME/CFS but also kids and teens with related and similar illnesses, like OI, POTS, Lyme disease, fibromyalgia, and EDS.

There are other ME/CFS groups on Facebook that I joined and participate in regularly, including:
  • Low Dose Naltrexone (LDN) for Fibromyalgia and (CFS) Fatigue.
  • ME Mums and Dads (that's for people who have ME/CFS and are parents to children of any age, even grown children, focused on the challenges of being a parent when sick)
  • ME/CFS - Pacing with a Heart Monitor, a very valuable group for those using a heart rate monitor to try to avoid crashes; many members are also trying various OI treatments to reduce heart rate.
  •  And not on Facebook...there's a group website for young adults with ME/CFS and related illnesses ("young" is defined as less than 40 years old) that is very active:  HealKick (thanks for the tip, David!)
So, please use the links above to join our new groups or some of the other groups on Facebook.  It's a great way to interact with other people who totally "get it."  Of course, please continue to read and comment on blogs, too!

Saturday, October 15, 2011

Time Out

I logged on to write a post called "Taking Care of Me," then realized I already wrote one with that name, just a few months ago!  As I said in that earlier post, I seem to have to keep learning the same lessons over and over again.

As I've mentioned here a lot recently, I've been feeling exhausted, overwhelmed, and frantically busy.  I've had several mini breakdowns lately, including Thursday night (as I wrote here), when I said, "I just can't go on like this!"  Well, I finally listened to myself.

I am canceling my plans to go to the NJ CFS Association's annual Conference on Sunday.  Last Sunday, we went on a 4-hour college visit, and it took me most of the week to recover from that.  I just couldn't stand the thought of feeling so totally wiped out for another week, and the conference would be an all-day 11- or 12-hour ordeal (I live about 2 hours away) that totally wiped me out last year.  As soon as I made this decision, I felt an immense sense of relief, so I know it is the right thing to do.

The ironic thing is that I am doing much better health-wise and am able to do more these days, but I don't feel much better on a day-to-day basis because I am pushing against my limits constantly.  I have let my activity and stress level increase along with my stamina, so I am in no better shape overall than before.  As I said, I just can't go on like this anymore.

I feel lately as if my life is nothing but obligations and responsibilities.  When I look back over the past week (or any of many past weeks), I can't see anything that I did for myself, for fun.  My time is filled with must to-dos, and the pressure is starting to get to me.  I realized yesterday that there are lots of things that I used to enjoy, that I no longer seem to have time for: reading magazines, watching movies, reading my favorite CFS blogs, camping with my family.  Some of these things are trivial, some are important, but the point is that they are things I enjoy that I no longer have enough time for.

I set goals every year for myself and try to keep track of them on a weekly basis (otherwise, I write the list and forget about it until the end of the year!), and some of the items on my list I am failing miserably at.  For instance, I have recognized this problem in myself before, so one of my weekly goals is "Do something fun for myself."  Whole months go by when I can't think of a single thing I did toward this goal!  Same with "Go outside for 10 minutes a day," "Meet Ken for lunch," "Meet with friends," and "Do something fun with the kids."  See the pattern?

An online friend of mine includes progress toward her goals on her blog, and I was stunned when I saw that almost all of her goals were things for herself: learning new things, making time for things she enjoys, etc.  I tried to learn from her and added a new goal to my list: "Take one mental health day each month for myself."  I thought this was a brilliant, mind-blowing idea - to take a day off all to myself.  I tried it in May and was surprised to find that I had trouble thinking of what I could do with a day off.  Taking away all productive to-dos, I didn't know what to do with myself!  I did end up enjoying the day but have yet to find time for another one!

So, I am rededicating myself to trying to find some balance in my life.  I realize that I need to take better care of myself (another goal I am doing terribly at is "Rest when symptoms flare").  I have a tendency to spend all of my time and energy doing things for other people. I know that some of this is unavoidable.  I am, after all, a wife and a mother to two teen boys.  In addition to focusing on myself and my family, I also recognize that it is important to me to help other people, and I want that element in my life.  However, I am realizing that I can help far more help to people if I'm not constantly exhausted and overwhelmed.

THIS time, I am determined not to forget how horrible it feels when I am so frantically busy and overwhelmed.  THIS time, I pledge to take better care of myself and not get to the point where I am so wiped out that I am short-tempered and miserable.  THIS time, I am committed to take time just for me and discover what makes me feel relaxed and happy.

What do you think?  Will I be ranting and writing the same things a few months from now?  It's almost like another sickness - my need to be constantly productive, always accomplishing something.  I mean, granted, there is a LOT to do around here that often goes undone - it seems we are always behind.  But my husband doesn't have trouble relaxing or taking time for himself.  Maybe it's a flaw in our female psyches, this need to get everything done.  I thought CFS had cured me of much of this destructive drive to do everything, but as my health has improved a bit, it has snuck back up on me.  I know the computer is a big part of my problem.

I need help!!  Do you have these same problems?  Do you have any ideas on how I can learn to relax and take time for myself?  Any ideas of how to remind myself of what's important in the midst of chaos?

OK, I am logging off now (I swear!) and spending a relaxing evening with my family (really, I mean it!).  Enjoy the rest of the weekend.


Thursday, October 13, 2011

Best Kids in the World!

After another long day of cleaning, cooking, laundry, driving, picking kids up, and doctor's appointments, I plopped on the couch in exhaustion tonight (after first filling 13 weekly medicine boxes), close to tears and said, "I can't keep this up!"

Both of my sons, at different times this evening, offered to get themselves up and ready in the morning and walk to the bus stop (a fairly long walk) so that I could sleep in tomorrow morning.  Then Jamie said, "Mom, you are awesome!  I really don't know how you manage to do all the things you do.  It is truly amazing."

Well, that is one positive side effect of living with chronic illnesses - my sons are very empathetic and caring.  Don't I have the greatest kids in the world?

Tuesday, October 11, 2011

Latest on XMRV and WPI

Ugh...I've been procrastinating on writing this blog post.  By now, most of you have probably already heard most of this news.  Honestly, we've just been in crisis mode here for the past month (or more), and I have been too wrapped up in taking care of Jamie and researching what might help him to have any mental energy left for summarizing the complex goings-on in the ME/CFS research world.  But I feel guilty for not keeping you up to date, so I will attempt to write a brief review of the latest news.

The latest XMRV study was published a few weeks ago.  Bottom line is that they were unable to reliably detect XMRV in ME/CFS patients.  Here's a good summary from the New York Times.  The reason this study was extra-important was that it was a multi-lab study; 15 previously-found-positive samples and 15 previously-negative samples were sent, blinded, to nine different labs, including Dr. Mikovitz's own lab at WPI and VIP Dx, the lab that has been selling and running commercial XMRV testing.  None of the labs was able to reliably find XMRV in the samples.  Only two labs in the entire study found any positive XMRV results at all, and none of the results was reproducible.  In some instances, even the same lab came up with different answers each time it ran the same sample.

Most alarming, VIP Dx could not get reproducible results.  This means that the same sample might sometimes come up positive and sometimes show negative.  That lab has now been shut down; there is no longer a commercial XMRV test available.

In the aftermath of this study, WPI (The Whittemore Peterson Institute) let Dr. Mikovitz go, as explained in this Wall Street Journal article.  In public statements, Dr. Mikovitz has said she is still committed to XMRV research and still has some grant money.  She is currently looking for another institution to sponsor her work.  WPI says, as stated in the above article, that they remain committed to ME/CFS research and specifically, research into retroviruses' role in ME/CFS. 

So, what does this all mean?  Is there really an XMRV?  Is it involved at all with ME/CFS?

From what I've read, it seems less and less likely that XMRV is the culprit in ME/CFS; however, I don't think anyone can conclusively say that for sure (though some have!).  XMRV could be just the result of lab contamination, as some claim, or it could just be something that is constantly changing and is therefore very hard to reliably detect.  The big NIH XMRV studies involving hundreds of patient samples are still in progress.

If you had your own blood tested for XMRV, you can't believe the results, whether they were positive or negative.  Even Dr. Mikovitz agrees with that; apparently, she recommended VIP Dx be shut down earlier.  So, what about the people who tested positive and have improved on anti-retroviral drugs?  Well, there are three possible scenarios: XMRV is indeed present but can not be reliably detected yet or there is another retrovirus present that has not yet been identified or the drugs had some other positive effect for reasons not yet understood.  A lot of "not yets" in there, huh?

So, yes, this is a bit of a setback for us, but I don't believe we are back where we started, as some have suggested.  For one thing, XMRV has brought unbelievable, tremendous attention to ME/CFS.  Before XMRV, can you even imagine the NYT, WSJ, Science, Washington Post, BBC, and other major news media all covering a story related to ME/CFS?  Now they routinely cover new studies and new information.  We are finally getting some of the attention that this debilitating illness deserves. 

With that attention comes interest (and funds!) for research.  XMRV opened the door for all sorts of new research possibilities into the causes of ME/CFS, with a focus on infectious agents.  Negative studies are absolutely necessary for science to move forward, in any field, and provide information that is often just as valuable as positive studies.  Scientists in many fields and at many different institutions now seem eager to build on what's been done and delve into the puzzle that is ME/CFS.  And that is a far cry from where we were just 5 years ago.

Wednesday, October 05, 2011

Changes in Lyme Treatment

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

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

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

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

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

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

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

Tuesday, September 27, 2011

Parenting a Child with ME/CFS

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

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

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

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

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

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