Monday, December 31, 2012

Movie Monday 12/31

Happy New Year's Eve!

Sorry I haven't been blogging much, but the holiday season has been hectic and exhausting. So, I will catch up on a few missed Movie Mondays today. Here's what we've been watching in between holiday doings lately:

Before all the holiday craziness began, Ken and I watched Vicky Christina Barcelona, a Woody Allen movie set in (yes, you guessed it) Barcelona. Two best friends, Vicky (played by Rebecca Hall) and Christina (played by Scarlett Johansson), go to Barcelona so that Vicky can do some research for her post-graduate degree. They meet a handsome, sensual Spaniard named Juan Antonio (played by Javier Bardem) who tries to seduce them. Vicky is engaged, but Christina quickly becomes involved with Juan Antonio. A strange love triangle ensues when his passionate but unstable ex-wife Maria Elena (played by Penelope Cruz) enters the scene. We are not huge Woody Allen fans, but Ken and I both enjoyed this movie. It definitely has its sad moments, but it is also filled with joy and passion (and humor) - basically a story about the ups and downs of love and life.

With the kids, we watched Disney's A Christmas Carol, the recent animated version starring Jim Carrey as Ebenezer Scrooge. We love A Christmas Carol and usually listen to an audio version in the car each holiday season - we hadn't done that yet this year, so we enjoyed watching the movie together. We were surprised by how frightening this animated movie was, though - I think young kids would definitely be scared by it and maybe have nightmares.

Craig (14) went out to a party one night, so Ken and Jamie (18) and I watched True Grit, the 2010 version by the Coen brothers starring Jeff Bridges. I've heard great things about this movie and knew it had won awards. but I still wasn't sure I'd like a violent cowboy movie.  We all loved it! I was surprised by how funny it was...and also touching. Hailee Steinfeld, the girl who played the lead role of Maddie, was absolutely outstanding, as were Jeff Bridges and Matt Damon. Maddie, 14, hires Bridges, an aging US Marshal who is known as the toughest one around, to find her father's killer so she can take revenge. Damon plays a Texas Ranger also looking for the same man. Both men - and everyone else they come across - vastly underestimate Maddie. It is a fabulous story made even better with superb acting. Now I'd like to see the original version starring John Wayne.

With a houseful of guests for 5 days, we took a much-needed break one night and watched National Lampoon's Christmas Vacation. It was just as expected - total silliness and lots of slapstick humor featuring Chevy Chase - which was just what we needed. Lots of laughs with the family, and it made our own family seem downright quiet and normal!

Here at my father-in-law's house, we watched Mission Impossible 3: Ghost Protocol the first night we arrived. It was also as expected - lots of insane action scenes with Tom Cruise, an intricate plot (that my FIL couldn't follow), and all sorts of amazing high-tech gadgets. Fast-paced, filled with action, and fun.

Last night, we watched a classic thriller from 1978 that we thought my FIL might enjoy more (and that we've wanted to share with the boys for a while): Invasion of the Body Snatchers. Though not as lightning-fast as recent thrillers, it kept us all on the edge of our seats and yelling at the screen: "No! Don't fall asleep!" Is there anyone out there who isn't familiar with the plot of this classic? Two friends working for the Department of Public Health in San Francisco begin to notice strange things happening to the people around them, after unusual new flowers appear everywhere. High suspense follows. It's a classic for a reason, and we all enjoyed it (though the boys needed to watch an episode of Modern Family afterward before bed!)

Jamie actually made it to the midnight showing of The Hobbit on opening night, but the rest of us haven't seen it yet. When I was a kid, my family used to go to Toronto for New Year's Eve weekend and watch back-to-back movies in the new multiplexes there - lots of great memories of movies and New Year's celebrations. Wish I had the stamina for that now!

Have you seen any good movies this holiday season?

Happy New Year!

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

Wednesday, December 26, 2012

Hectic Holidays!

I am sitting alone in our family room in a completely silent house, after a week of non-stop work and utter chaos!  Ahhhh....silence and solitude. I can hardly believe it.  Our last house guests left at 4 am, and my husband and sons are still sound asleep. 

Despite not getting to sleep until midnight (said guests and our sons were up late, talking loudly in the hallway right outside our bedroom door!), I was wide awake by 6 am this morning, with no hope of getting back to sleep, as I have been every morning for the past month or so. I have no idea why this is happening, but I can't take much more of it!  My usual bedtime meds are still working well, and I sleep soundly, but I wake literally at the crack of dawn every day. I have tried more melatonin, less melatonin, no melatonin, taking valerian when I wake at 6am, taking Ambien before bed, etc. No matter what I do, I still wake up too early. Obviously, I need to go to bed earlier, but that was impossible with a houseful of night owls.

So that frustrating lack of sleep (I normally need a solid 9 hours at night to be able to function during the day) made the exhaustion and over-doing ten times worse this past week. It felt like my husband and I spent all our waking hours preparing meals and cleaning up after meals! Even when we went super-easy and got take-out or just set out stuff for sandwiches, it was still a lot of work to feed between 6 and 14 people at every meal for five days. And I sorely missed my lying down time throughout the day. You really can't lie flat across the entire couch when you have that many people in the family room!

I don't mean to gripe and sound like a Grinch - it's just such a relief to have a chance to "talk" to people who will totally understand. It was actually very nice to see my family. There is nothing like little kids at Christmas-time, and I loved seeing my niece and nephew. My 6-year old nephew was so excited about opening presents, he was just bursting with joy! And when he opened our gifts and saw the Teenage Mutant Ninja Turtle action figures we got him (yes, they are back), he squealed in delight as if he'd won a million dollars. Gotta love that kind of unbridled joy and enthusiasm. My niece, though now conscious of not wanting to seem childish (at only 10!), was equally thrilled with the birthstone necklace we gave her.

I also love spending time with my mother, and she is very kind and understanding about my limitations. The rest of my family just sort of ignores my illness and changes the subject if I bring it up (which I rarely do since it obviously makes them feel uncomfortable). They rarely think to help out, either. My mom - who is 67 and had hip surgery a month ago and is still using a cane - was the only one pitching in at every meal and constantly asking how she could help, despite her own pain and exhaustion. I was grateful to her for that.

It really was good to spent time with everyone, but five days is a lot for me to be around other people, even people I love. I know you all understand that. We ate a lot of great food (too much!) and had lots of laughs talking, watching movies, and playing games. I just needed more downtime. My afternoon nap just wasn't enough - and of course, I was much too active every day.

I wish I could just lie here in the silence and appreciate my couch for the rest of the week, but we will soon be off on another adventure, to visit my father-in-law. The packing and traveling will be exhausting, but the visit will be low-key and quiet, since he is 87.

I hope you all enjoyed a relaxing holiday with family and friends.

My husband, sons, and I with my mom and her husband at a holiday party

Tuesday, December 18, 2012

Low Expectations

How's this for a cold splash of water on the face? My lawyer just called about my disability hearing tomorrow.
There are 5 disability judges in Delaware, and we have the 3rd lowest approval rating of all 50 states! He said he can tell by the way the schedule is arranged tomorrow that it will be one of 3 judges. Two of those have approval rates of 20% - that puts them among the lowest 10-15% of all the Social Security judges in the entire nation!! So, I have a 67% chance of getting a judge who almost always says no. Very discouraging! 
The whole process is just so unfair - the mere fact that it relies on which judge you get rather than the merits of your case is just crazy.
Wish me luck - I have a feeling tomorrow will be a difficult day emotionally.

Friday, December 14, 2012

A Season of Hope

I haven't had much energy left for blog writing the past two weeks, but the good news is that I have been using up all of my energy on some very worthy projects that give me a great deal of hope for all of us with ME/CFS and the future of our illness.

I was recently asked to join a fledgling organization called the National Advocacy Alliance for ME/CFS. Having been told for many years by the NIH (U.S. National Institutes of Health) that ME/CFS patients would have a much higher effectiveness if we banded together, a grassroots group has formed this Alliance and is moving forward aggressively on several exciting projects. It is a collection of existing state, regional, and other CFS-related organizations, including:
  • CFS Solutions of West Michigan
  • CFS Knowledge Center, Inc.
  • CFS/Fibromyalgia Organization of Georgia, Inc.
  • Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivity Coalition of Chicago
  • Coalition 4 ME/CFS
  • The Connecticut CFIDS & FM Association, Inc.
  • Massachusetts CFIDS/ME & FM Association, Inc.
  • New Jersey CFS Association, Inc.
  • P.A.N.D.O.R.A.
  • Phoenix Rising
  • Rocky Mountain CFS/ME and FM Association
  • Speak Up About ME
  • Vermont CFIDS Association, Inc.
  • Wisconsin ME/CFS Association, Inc. 
 Plus several individual advocates, like myself, who have contact with a number of other patients (for me, through this blog and our growing online parents' group).

One of their first projects is an awareness poster that is almost ready for the printer. It features several different ME/CFS patients' photos, plus some information on the severity and symptoms.

To go along with the poster, they are working on some website text that all of the organizations above can use to go along with the poster and link to additional information.  I was helping out with the editing on that this week.

The other exciting development is that the CDC (U.S. Centers for Disease Control & Prevention) is adding a new section to their website on pediatric CFS (finally!) and is actively seeking input from a wide range of stakeholders. Yes, you heard that correctly - the government is actually listening to input from outside sources! Yesterday, another mom, who heads up Speak Up About ME, and I had a teleconference call with several people from the CDC to give them input on what we thought was most important for their new pediatric webpage.  They were truly interested in our input, listened actively and asked questions, and invited us to e-mail any additional information and resources we had. I was so excited after that phone call that I couldn't nap yesterday! Finally, they are listening to patients and parents, actively including us in the process, and moving forward to address the horrible lack of attention to pediatric CFS. After my unsuccessful nap, I spent another 90 minutes writing up my suggestions, with links to more information, for the treatment section of the pediatric webpage.

So, that is why I am so exhausted and lacking in time or energy for more writing! But I am filled with hope. All of our advocacy efforts - letters, awareness campaigns, donations, testimony at CFSAC - is all beginning to pay off. Things are moving forward!  In addition, for several years now, we have seen significant movement forward in ME/CFS research - with more and better studies rooted in hard science digging into the mysteries of our illness.

It just all fills me with a tremendous amount of hope for our futures. This entire landscape has changed dramatically from when I first got sick 10 years ago. Then, the government was paying almost no attention to CFS, patients were not involved at all, and the few research studies being done all seemed to focus on psychological issues. True, we still have a long way to go before all medical professionals know how to effectively treat ME/CFS, but we are making progress and moving forward!

And now, with most of my obligations finished, I can finally turn my attention to the holidays and my family. Wishing you all a season of hope and joy! 

Monday, December 10, 2012

Movie Monday 12/10's been a whole week since I posted here.  Sorry about that.  I had a pretty good week, with just a 2-day crash (and emotional melt-down!) in the middle of it, but I've been very busy with the holidays approaching.  Tough time of year to fit in blogging!  I do hope to write more here this week, but we will see...I have a writing assignment to work on that has to take priority.

Anyway, we saw one movie this weekend:

Ken and I watched Hope Springs Friday night, and we both enjoyed it very much. You've probably seen the ads that are saturating TV lately. Meryl Streep and Tommy Lee Jones star as a married couple stuck in a major rut. Their kids have left home, they never touch each other (haven't had sex in 4 years!) and rarely talk. They are just sort of living parallel lives in the same house, and Kay is very unhappy. In desperation, she signs them up for a week-long intensive marriage therapy course run by a therapist whose book she read, played by Steve Carrell. Arnold is not at all pleased with these arrangements but he does finally agree to go. The story follows their week in therapy as they attempt to reconnect. There are some funny moments in the movie, especially in their awkwardness as they try to resume their physical relationship, but the subject matter is taken very seriously, too. In fact, I've never seen Carrell in such a serious role - he plays the straight man here. All in all, we both really enjoyed this story of an older couple rebuilding their relationship. All 3 actors were excellent in their roles.

Have you seen any good movies lately?

Monday, December 03, 2012

Movie Monday 12/3

My younger son was home sick for three days last week (crash caused by a viral trigger) which would normally mean lots of movies, but he was only in the mood for TV!  He was on a History Channel kick, watching endless episodes of Pawn Stars, Storage Wars, and American Pickers.

We had a very busy weekend but did find time in the evenings for some movies:

Saturday night, my husband and I watched Seeking a Friend for the End of the World, a very unusual sort of romantic comedy starring Steve Carell and Keira Knightley.  The movie opens with a giant meteor hurtling toward the earth, with a last-ditch effort to stop it having failed.  So, yes, the “end of the world” in the title is meant literally, as the entire population of the earth prepares to die in three weeks.  Carrell’s character, Dodge, is his usual sort of mild-mannered, dull guy who works as an insurance salesman and whose wife left him when the big news was announced.  Sounds sort of depressing, doesn’t it?  Oddly, though, it has its funny moments (mostly dark comedy, as you can imagine), and at its heart, it is a warm, touching love story.  When rioting chases him out of his city apartment (New York, I think), Dodge decides to set off on a mission to find his high school sweetheart who recently wrote him, saying he was the love of her life.  On his way out, he teams up with his quirky neighbor, Penny (played by Knightley), in order to save her from the riots.  They end up on a very strange road trip, encountering all sorts of odd things as people all cope in their own ways with the projected end of the world.  Overall, we really enjoyed it, and it has a great soundtrack.
Sunday night, our 14-year old son chose the movie:  National Lampoon’s European Vacation.  We recently introduced him to the classic comedy, Family Vacation, and he does enjoy silly comedies!  It was as expected – lots of goofy, predictable jokes but funny nonetheless.  Lots of laughs and not a single redeeming feature – just a bit of escapist fun to end the weekend.

Ken and I are kind of at a lost on weeknights, since we caught up with both The Good Wife and Treme on DVD.  We are enjoying Elementary and Perception.  And we watch Revolution, Bones, and Glee with Craig before he goes to bed.  Any other good TV shows we should check out?
Have you seen any good movies lately? 

Thursday, November 29, 2012

Switching to Long-Acting Beta Blockers

(NOTE:  I am not a doctor and do not intend to offer medical advice to anyone since we are all different.  In this post, I am just hoping to share my own experiences with a medication that has helped me.  You should talk to your doctor before trying any treatment yourself to make sure it is appropriate for your own particular circumstances.)

I made a change in my medications last week that has so far yielded great results and a definite improvement in my quality of life!
[For those who aren't regular readers of this blog:

First, go back and read this post on Orthostatic Intolerance (OI) if you don't know much about it or think it doesn't apply to you.  Everyone with ME/CFS has some form of OI (difficulty maintaining a steady blood pressure and heart rate when upright, whether they go up or down or all over the place) which is caused by autonomic nervous system dysfunction. Check out my post on In-Office OI Testing if you want to get tested yourself.

Then, read the post that explains how OI relates to exercise intolerance aka post-exertional crashes.  And finally, catch up on my past experience in using beta blockers to treat my OI.]
 So, almost two years ago, I started taking beta blockers to help treat my OI.  They helped me immediately and since then, I have been able to be much more active - taking walks, using light weights, and even going to the grocery store, all without crashing later.  My doctor started, in January 2011, by prescribing propranolol which is a short-acting beta blocker.  She figured that would give me the best flexibility for adjusting the dose throughout the day.  I settled into a pattern of taking 20 mg as soon as I woke up in the morning, another 20 mg after lunch, and occasionally, a third 20 mg dose after dinner, if I was going to be active or out in the evening.

But there were some problems.  The biggest problem was that by the time I woke up in the morning, I had no beta blockers in me, so my POTS would be in full-on attack mode - just getting out of bed, brushing my teeth, and getting dressed would send my heart rate soaring up to 120, 130 or higher (in fact, my POTS may have been worse at that time, due to a rebound effect from going without them all night).  I had to severely restrict activity in the first hour after I got up - couldn't shower or carry the laundry basket downstairs or anything else.  I had to lie quietly on the couch and wait for the beta blockers to kick in.  My friends like to take walks in the morning, and one of them works and needs to walk early, but I was here in the house, waiting for my heart rate to calm down.

Meanwhile, my son, who was barely able to get up of the couch for the past 18 months, started long-acting 24-hour beta blockers at the end of August.  He started college a week later and is doing GREAT.  He not only walks all over campus, he also plays Frisbee with his friends, has only missed 3 days' of classes all semester, and is even doing a workout video called Insanity (!) with his friends.  Beta blockers weren't the only factor in his improvement, but they were one of the biggest causes of this miraculous change.

Finally, besides my son's experience, I heard that several other young friends of ours with ME/CFS were also much improved with long-acting beta blockers, most of them prescribed by Dr. Peter Rowe, who is one of the world's foremost experts on pediatric CFS and OI.  He recommends taking a 24-hour beta blocker at bedtime; he says when taken that way, it will help improve sleep as well as overall functioning because random bouts of tachycardia disrupt sleep during the night for people with POTS.

So, given all this, I asked my doctor if I could switch to a long-acting beta blocker.  She considered the ones my son takes and others that other patients of hers take, but decided the best thing for me was to stick with propanolol which - surprise to me! - comes in a long-acting variety also.

The first night I took it (60 mg), I woke up the next morning and put my heart rate monitor on immediately.  Right out of bed, my heart rate was only in the 70's!  I washed up, got dressed, and even carried a load of laundry downstairs, all the time with my heart rate varying between 70 and 90 - a huge improvement!  However, during the morning, I noticed that my heart rate would suddenly jump up above my AT (about 103) - when loading the dryer, cooking, etc.  I called my doctor and asked her if I needed a higher dose (I had encouraged her to start with the lowest dose available), but she told me to be patient and give it a week or so, that it would build up in my system and become more effective over time.

She was right!  I have had a really good week and a half - so much better than my last two months.  We spent the weekend up in Rochester, visiting my family for the holiday.  Normally, those visits completely wipe me out, and I barely make it through each day.  I did great last week!  I actually enjoyed all the family gatherings for the first time in years because I felt so much better.  And now, back at home, I have been taking walks, lifting weights, cooking, etc.  I LOVE being able to get going in the morning without waiting for my meds to kick in.  I can shower when I first get up!  Woohoo!  And I do think I am sleeping better, too.

I'm not saying beta blockers are a cure-all, but they have really allowed both my son and I to be more active, do more, and enjoy our lives more.  Even better, we have both discovered there is a positive domino effect.  Being able to exercise more improves muscle strength, cardiovascular health, and overall physical condition...which in turns helps us to feel even better and do even more!

A couple of tips to remember if you want to try beta blockers (or, really, any ME/CFS treatment):
  • There are dozens of different beta blockers out there, of several different types.  Wikipedia has a long list of uses for beta blockers, with this warning: "Large differences exist in the pharmacology of agents within the class, thus not all beta blockers are used for all indications listed below."  It can take a lot of trial and error to find exactly the right one for you, so DON'T GIVE UP!  If one doesn't work for you or has side effects, try another!
  • As with most meds for CFS, it is usually best to start at the lowest possible dose, then go up gradually, if you need more.  With beta blockers in particular, one side effect is fatigue (yes, the exact thing we are trying to reduce!).  So, if you feel worse on beta blockers, then your dose is almost certainly too high.  Try reducing to the lowest dose possible, even cutting tablets in half or quarters if needed, especially if you are one of those people who always overreacts to meds.  If even the lowest dose is too much, try a different beta blocker (see #1).
  • Beta blockers are commonly used to treat high blood pressure, so you might be concerned that taking them will lower your already too-low blood pressure.  That hasn't been the case for me nor for my son (we both have NMH as well as POTS) or any others I've spoken with.  In fact, my BP has been steadier on beta blockers, just as my heart rate has, and it has not gotten lower.
  • Beta blockers do not actually lower blood pressure, per se.  They work by blocking certain hormones in the body that affect heart rate and blood pressure.  The one I take, propranolol, is a non-selective beta blocker that blocks the action of both epinephrine and norepinephrine; others work differently.  We know that people with ME/CFS have messed-up endocrine systems that don't release the right amounts of hormones at the right times (which contributes to everything from sleep dysfunction to emotional swings to autonomic nervous system dysfunction aka OI).  Anything that helps to control and maintain steady levels of any hormones helps improve our symptoms, in our experience.
  • Did I mention...DON'T GIVE UP?  It often takes many trials of many different meds and doses to get the effect of the beta blockers just right, so keep trying.  My doctor was thrilled when I asked her if I could try beta blockers.  She said, "that's an easy one to say yes to," because they have been used safely for decades for many types of conditions (as opposed to some of the new research I sometimes bring her!).
So, that has been our experience.  I wanted to share my excitement with you, of being able to do more and feel better, in the hopes that perhaps it will help you, too.

Monday, November 19, 2012

Movie Monday 11/19

 I was very badly crashed this weekend - one of those lost weekends when I was totally useless and trapped on the couch.  So, the only thing I was able to do was read and watch movies.  Coincidentally, Ken and I were on our own both Friday and Saturday night, as Craig spent the entire weekend at his friend's house (they felt bad because their son was stuck at our house through the whole hurricane!)

So, Ken and I watched 2 movies this weekend - one horrifyingly bad and one surprisingly good:

Since Ken had been so kind to me all week, taking care of me and running errands while I was crashed, I chose the Action section at Redbox Friday night (while he was getting Thai food for dinner) and chose The Letter, described as a psychological thriller.  It was definitely psychological but contained no action or suspense.  This reviewer at IMDB so perfectly captured its awfulness that I thought I would just quote from it:
"“The Letter” is not a thriller. It is barely a film. It’s a boring, self-important, disjointed and pointless pile of tripe masquerading as a movie.

The story, what little there is, follows Martine Jamison (Winona Ryder), who is starting rehearsals on her new play in New York. A new actor named Tyrone (Franco) causes problems on the set and develops a fascination with her. Over the next weeks, Martine becomes paranoid that someone is trying to poison her, and she begins to rewrite her play.

Honestly, that one-paragraph blurb makes more sense and is better constructed than the entirety of this film."
          - Kevin Carr
Well, that pretty much sums it up.   This movie was just really bad, and not even funny bad.  It made no sense at all, even when the "big secret" was sort of revealed at the end (I think).  Ryder was good, as she always is, but everything else was awful.  In fact, as I sat down to write this review, I asked Ken, "Hey, do you have any idea why it was called The Letter?  Was there a letter even in the movie?"  Nope.  No idea why it even had that title.  Total drivel.

We had better luck on Saturday when we watched a DVD I had gotten from the library last week for my Mom and I to watch together.  Yup, we both agreed a chick flick was far better than The Letter!  We watched The Vow, starring Rachel McAdams (as Paige) and Channing Tatum (as Leo), and it was a surprisingly touching and unique story, based on real-life events.  Paige and Leo meet and fall in love and get married.  Four years after they met, they are in a car accident, and Paige loses her memory of the past five years.  As far as she knows, she is still in law school and still engaged to her old fiance, Jeremy.  She has no memory of Leo at all; when she wakes from her coma, she thinks he is the doctor.  They story continues as Leo tries to woo her a second time, but Paige is emotionally scarred and wants to be around what is familiar to her.  It was warm and more complex than I expected, with some humor and drama - all in all, a wonderful love story, made even better by the fact that it is true.

Have you seen any good movies this week?

Friday, November 16, 2012

Emotional Cost of the Disability Process

I am in the final stages of my final shot at getting Social Security Disability.  I have had ME/CFS for 10 years, applied to Social Security several years ago, and have already been rejected twice.  My lawyer is helping me to prepare for my final hearing, before a judge (by video), next month.  My chances are slim because Delaware has the 3rd lowest approval rates for disability of the 50 states.  Lucky us.  It really comes down to which of the four disability judges you get; some are known for turning down almost everyone.  That is just so wrong, that in the end, it doesn't matter what the merits of your case are but which judge you get.

I met with my lawyer a few weeks ago, and he explained that my case was weak because it relies mostly on self-reporting my limitations - I wrote a narrative explaining what I can and can't do and how the post-exertional crashes and OI restrict my activity level, made copies of 10 years' worth of calendars, data, and graphs, and submitted letters from my doctors.  Despite all this, my case has now been rejected twice, so I am trying to strengthen my case with more medical evidence (like my recent OI test).  Ironically, you have to work very hard in order to prove that you can not work.

Beside the physical consequences of having to put so much effort into filling out forms, gathering and copying documents, requesting letters, etc., I am finding that the emotional cost of applying for disability is much greater than I expected.

For starters, there is the very degrading and dehumanizing aspect of simply not being believed.  I have tried for 10 years to carve out a second career as a freelance writer in accordance with my limitations, and I have been unsuccessful in earning enough money to contribute anything significant to my family's income.  I would give anything to be able to be productive again!  And yet, after submitting all of this evidence of my disability, two sets of reviewers have now told me that I am perfectly capable of working full-time as a consultant, like I used to.  Really???  So, even though sitting in someone's living room for a 2-hour book group leaves me exhausted and useless the next day, Social Security says I am able to manage 8-hour days spent on my feet auditing or teaching or leading groups of people.  It's so absurd it is almost funny...except it's not funny when it is happening to you.

My lawyer suggested getting one more set of letters from my two primary doctors, along with two more forms for them to fill out, specifically stating that I can not sit up for more than 2 hours without needing to lie down and rest so I am unable to manage even a sedentary job.  I met with my primary care doctor yesterday, and she was wonderfully supportive.  She is also angry with Social Security for not accepting all the previous evidence submitted.  She typed another letter, while I was sitting there, which leaves no doubt that I can not work.  She explained to me that she rarely writes this sort of letter, even though she is asked frequently.  She said, "It is rare that a patient is so disabled that they really can't manage any job at all.  I wish the judge could look through the records and see how rarely I have supported a disability claim."  But she did it for me.

When I got home from her office, I found a letter from my CFS specialist waiting in the mailbox for me.  She is also getting frustrated with this ridiculous process and wrote a very strongly worded letter to go with the form.  It was exactly what I had asked for.  So, why did it make me want to cry?

Despite 10 years' of daily experience telling me this, it is still disturbing to read in black and white, "...I deem her prognosis to be poor and recommend total and permanent disability."  Having to face the reality that my illness is severe and permanent is heart-breaking.  I think my primary care doctor (who knows me well) realized this because she said to me very gently, "I'm going to write that your illness is permanent so there is no question of the need for disability, OK?"

There are so many things I want to do with my life!  I want to write another book but have not found the energy or productive time to get further than the first chapter and outline, after five years of trying.  I want to go backpacking again and take long hikes through remote wilderness with my family.  I want to exercise - oh, how I want to exercise!  I almost started crying yesterday when I drove past a sign for Zumba classes - I would love Zumba!  I want to spend time with my friends and family and really enjoy myself and them, instead of always having to be so careful.  I want to write and travel and hike and,!  I used to define myself in part by my professional success.  I became an expert in my field, wrote a book, gave talks at conferences and meetings; I enjoyed my work and was proud of my success.  Knowing that is all in the past is heart-breaking.

I think this is all hitting me extra hard because I haven't been feeling well lately.  In fact, in preparation for my doctor's appointment yesterday, I looked back over the last two months (still keeping those records!) and realized I've been worse since the beginning of September.  So, that makes the emotional stuff harder because I am even more limited and restricted than usual.

I think this process of applying for disability would be difficult even if the process itself were perfect; it's hard to face your limitations in such stark terms.  But the fact that the process is incredibly messed up just makes everything so much worse.  It is humiliating to keep trying to prove how disabled you are, when it seems like no matter what the evidence shows, you will be rejected and not believed.

Well, one way or another, it will be over a month from now, but I think the grieving will go on.

Wednesday, November 14, 2012

Update on Our Gluten-Free/Dairy-Free Diet

This post is long overdue, but things have been very busy around here.  Way back in July, I wrote that my son, Jamie, and I would be trying a gluten-free/dairy-free diet on the advice of a consultant.  Since then, some of you have asked how it's going and whether it has helped, so here is a recap.

Jamie, 18, was dairy-free for 9 weeks and gluten-free for 14 weeks; he has now added both back to his diet, though in moderation.  He does think he may have some mild dairy intolerance: he notices some GI symptoms after drinking skim or low-fat milk but not as much after eating ice cream (which he ate at every meal after being dairy-free for 9 weeks!).  This makes sense if he has a mild lactose intolerance - the lower the fat content in dairy products, the higher the lactose content.

As for me, following the strict no-dairy diet only reinforced to me how severe my dairy intolerance really is, and I am trying to remain completely diary-free.  With no dairy at all in my diet, my GI symptoms cleared up amazingly.  I've been cheating a bit since Halloween, with all the yummy candy bars in the house, and I am starting to have trouble again.  As Jamie says, "It's a slippery slope, Mom!"  He's right - when you start cheating a bit here and there, it is easy to fall out of the habit.

Like Jamie, I have added gluten back into my diet just recently but in very small amounts.  I am still eating gluten-free bread when I want a piece of toast and sticking with gluten-free flour when I bake.  I have, however, added oats back to my breakfast options, though not every day.  I found that the gluten-free diet had an unexpected negative effect: it left me quite constipated, in spite of all the fruits and veggies I eat.  I guess all those whole grains were doing their job!

It is hard to say whether the restricted diet helped either of us in terms of energy and overall health (which was our reason for trying it).  I certainly didn't improve over the past 15 weeks - in fact, I haven't had a very good fall generally.  Jamie has improved - stunningly, in fact - but we tried so many new things all at once in August and September, in an attempt to allow him to manage college, that it is hard to tell what helped.  He believes that beta blockers, started the week before college, are the main reason for his miraculous improvement, and I think he is probably right.  But we also changed his diet and started about a dozen new supplements over this time, so it is impossible to tell exactly what helped the most, even though I tried to add new things one at a time.

In addition, I believe it is entirely possible that the diet restrictions helped him get past the very low point he was at, even if the effect isn't obvious.  We know that blocked methylation processes were almost certainly an issue for him (see previous post), based on his extreme reaction to his treatment for tick-borne infections.  Gluten, casein, and gliadin (a protein similar to gluten found in oats) all block one of the methylation pathways in people with illnesses like ME/CFS, so perhaps the diet helped to unblock that pathway, and once it was working more normally, Jamie's own body was able to take over and continue to improve, even with adding some dairy and gluten back in recently.  Jamie is also tolerating his Lyme meds better - after 18 months, he is finally up to a normal dose of doxycyline! - and that may also be due in part to the dietary changes.  We will probably never know exactly what role diet played in his improvement, but he and I are both on the look-out for any regression now that he has dropped the restrictions - so far, so good!

I planned to include some tips for cooking gluten-free and dairy-free, but that will have to wait for another day, since this post is already so long and I really need to get some other things done this morning.  So, look for those in an upcoming post.  I'm interested to hear whether others have seen improvement in energy and overall health from restricted diets.

Monday, November 12, 2012

Movie Monday 11/12

Ah, sorry for the long stretch of silence last week!  I drove to Connecticut and spent the week taking care of my mom who had hip surgery recently.  It was tiring, as you can imagine, but we had a wonderful time.  We rarely get any time alone together!  I enjoyed cooking for mom, since we like the same wide variety of flavors.  Besides eating yummy food, we spent lots of time talking and watched some movies, too:

We started with a light romantic comedy, When in Rome.  It was just OK, based on a pretty silly premise about coins in a fountain in Rome that make people fall in love with you.  It had a few funny moments but was mostly just light, predictable fluff.  However, if you have seen the movie Napoleon Dynamite, then this scene with its star, John Heder, and the surprise twist at the end is actually hilarious.  I shared it with my sons when I got home, who have seen Napoleon Dynamite roughly 100 times.

We decided that had been just a little too light for us, so next we watched The Stone Angel, starring Ellen Burstyn as an old woman looking back on her long life.  Her oldest son wants to move her to an assisted living facility, and she doesn't want to go.  The scenes of the present are interspersed with her memories of the past.  She lived a difficult life with many heartbreaks (and also some happiness!), so it was a somewhat sad movie but also very warm and touching.  My husband would have hated it - he doesn't like to watch anything sad - so it was perfect to watch with my mom.  She and I both loved it; it's about real life, with all its ups and downs.

Back home this weekend, Ken and I watched To Kill a Mockingbird, with Gregory Peck.  I know it's an old one, but I'd never seen it, and it's based on one of my all-time favorite books.  Peck didn't look quite how I pictured Atticus (though he played the part well), but I thought the rest of the casting was perfect.  As with all movie adaptations, there were some omissions from the book that I missed, but overall, it is a wonderful movie with all the warmth, humor, and drama of the book.  I just adore Scout, especially when she goes to school...and that ham costume is hilarious! 

Have you seen any good movies lately?

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

Monday, November 05, 2012

Movie Monday 11/4

I thought we'd spend our time inside during Hurricane Sandy, watching movies with the kids and reading aloud once the power went out.  Ha!  We never lost power - which was very fortunate, of course - but it meant that our two sons and their friend (who was stuck with us for the duration of the storm) played video games nonstop (with a few board games thrown in for good measure)!  So, Ken and I read a lot, and we did finally watch some movies together after the storm had passed:

Tuesday night, before our oldest son returned to college, we all watched Thor.  I've said here several times that I've had my fill of superhero movies the past few years, but my husband and kids love them, and I'd heard Thor was good.  And it was good...but it was another superhero movie!  It is, of course, the story of Thor, the Norwegian mythological figure who wields a hammer.  In the movie, Thor and his compatriots are actually real but have remained on their own planet for the past however many centuries.  Thor is all set to ascend to the throne, but he does something rash and dangerous and is instead exiled to earth. Personally, I liked the parts that took place on earth the best.  The movie has an amazing cast, and I loved the humor integrated into the story throughout (plus actor Chris Hemsworth who plays Thor looks amazing wearing a t-shirt....or not!).  My kids would probably disagree and say they liked the off-earth, fantasy parts of the movie best.

Friday night, despite the very short school/work week, I was beat.  So, when my son pleaded with me to put the pork chops back in the fridge and order Chinese take-out, it didn't take much convincing!  On the way to pick up the take-out, I stopped by Redbox and grabbed a couple of movies - yes, a perfect evening!  So, with our son, we watched Safety Not Guaranteed, an Indie flick that made my husband say, "Oh, no, not another quirky movie!"  And, yes, it was definitely quirky but also very warm, funny, and likeable.  A writer for a small Seattle magazine (played by Jake Johnson who plays Nick on New Girl) decides to follow up on an odd personal ad looking for a partner for time travel.  He takes two interns with him to investigate.  One of the interns, played by the adorable Aubrey Plaza (who I just read is from our town, Wilmington, DE!), pretends to answer the ad but gradually comes to like the odd guy who placed it, as he trains her for their "mission."  It was funny and tender, and all three of us enjoyed it very much.  I've included a clip below, in case you are interested.

Double-Feature!  After Craig went to bed, Ken and I watched Rock of Ages, the 80's rock tribute starring Tom Cruise.  It was OK, but we didn't love it.  It turned out to be a musical, based on an actual stage musical, and we guessed it probably worked better live.  Despite the impression given by the ads and previews, Tom Cruise's character, Stacee Jaxx, a big rock star, is not actually the main character.  It's really a rather trite story about Sherry, a girl who takes the bus from Oklahoma to LA, hoping to have a singing career, and Drew, the young bartender hoping to make it big with his rock band whom she meets when she arrives.  We decided the best way to describe the movie was uneven.  By the end, we realized it was all meant to be tongue-in-cheek, something of a parody of rock musicals (at least we think it was...).  And there are some funny moments, but in some scenes, especially those with Sherry and Drew, it seems to be taking itself seriously.  So, overall, it wasn't all that funny and it wasn't all that warm-hearted.  Yes, the music is great, especially if you came of age in the late 70's and early 80's, but the songs are all sung by the actors, not by the original artists (again, something that might have worked better live).

Have you seen any good movies lately?

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

Sunday, November 04, 2012

The Joys of Support

We got together again last night with our local group of families affected by ME/CFS (you can read about how our group got started here).  This is mostly families who have one or more kids/teen/young adults with ME/CFS and/or related illnesses, though several local adults with CFS have started to join us as well.  As always when we get together, we had a wonderful time!  I know, a party with a bunch of sick people probably doesn't sound all that thrilling, but it is actually a lot of fun!

This group of people have become close friends of ours; they are people I think I would be friends with even if we didn't have CFS in common, though it was CFS that brought us all together.  They are all warm, kind, intelligent, and caring: all in all, a very welcoming and supportive group.  A new local family joined us last night, and they fit right in and felt like old friends by the end of the evening.

My family doctor said she has two other pediatric CFS patients, and she has been trying to convince their parents to call me so they can participate in our local group, too, but so far, I haven't heard from either of them.  Last night, we were all trying to figure out why these families seem reluctant to meet others in the same situation, and we wondered if maybe they think that getting together with other people with sick kids might be depressing; perhaps they think these gatherings are like group therapy, where the kids sit around and talk about how sick they are.

The funny thing is that the truth is completely the opposite of that!  Our family gatherings are social - for some of these kids, the only social events they are able to manage in their isolated lives.  The kids rarely talk about their illnesses, but that's the point: they don't have to.  When they are with other kids with ME/CFS, they know that they are instantly understood - no embarrassing explanations or excuses needed.  They can put their feet up while they play cards or lie on the ground in the middle of a Frisbee game, and everyone else will understand.

So, when the new teen showed up last night, she walked into the family room and was instantly accepted by the other kids and brought into the game they were playing.  The kids talk and laugh and basically act like normal teenagers, which is something that some of them rarely get to experience.  So, in a way, it really is group therapy for them, just not in the way you might think (and shhh!  don't tell them that - they think it's just fun!)

As for the adults, we do talk a lot about ME/CFS, but it's a comforting, supportive kind of talk.  We don't have to worry about making another parent feel uncomfortable talking about our sick kid, like we would in a normal social setting.  We are all dealing with the same issues.  So, we trade school horror stories and treatment advice and doctor recommendations, knowing that everyone else in the room completely understands.

Most of the parents are healthy, but they all understand what it's like to live with ME/CFS.  So, for me, it's a much easier social setting than being at a regular party with "normals."  On the rare occasions that I manage a normal social event, I feel so self-conscious and different. Usually, everyone else at a party is standing, while I am sitting in a corner somewhere, staring into other people's belly buttons (or worse!).  Everyone else is drinking while I sip at my ice water; and I longingly peruse the buffet table, unable to find anything but the raw veggies that I can safely eat because of food intolerances.  But with this group of people, I feel completely comfortable.  They know I can't stand for long, so we all sit.  People bring a dish or two to pass and set them on the table saying, "Now this one is gluten and dairy free, but that one is just dairy free."  It's a very comfortable and comforting social event.

If you have the opportunity to meet others with ME/CFS or related illnesses in your own local area, I highly recommend it.  These friendships are just so enriching and easy.  I found all of these people in different ways, so there are many options for finding others locally.  Here are some ideas:
  • Give your local doctor(s) your contact information, and ask them to pass it along to anyone else they see who has ME/CFS (if you want to proceed more carefully, just give out your e-mail address only).
  • If it is your child who is sick, do the same with school personnel - give your contact info to the guidance counselor or other 504/IEP coordinator and ask him or her to share it with other parents in similar situations.
  • Ask your friends and family to let you know if they ever meet someone with ME/CFS.  I met one of our local group of Moms when she broke down into tears at a vet appointment because her daughter was so sick.  She confessed to her vet - who happens to be one of my closest friends - why she was crying, and my friend suggested she call me.
  • If you are a member of any Facebook groups or discussion forums related to ME/CFS, post a question asking if anyone else lives in your region.  We found several of our local families that way.
  • Check local newspapers and library bulletin boards for notices of ME/CFS support group meetings held locally.  Even if you aren't looking for a formal support group meeting, you may meet someone there who you would like to get to know better.
  • Check with the CFIDS Association - they keep a list of resources for each state which you automatically receive when you become a member.  Several states (NJ, WI, CT, MA for instance) also have active CFS associations with similar resources.  Search for your state name and ME/CFS in a search engine and see what comes up.
Believe me, you won't regret making these connections.  These friendships have enriched our lives - and provided much-needed support to us.  And along the way, we've met some wonderful, amazing people.

Friday, November 02, 2012

Still Here! All is Well...

Sorry for not posting in a while.  Hurricane Sandy kept us busy for a few days, then Halloween, and life is just now returning to normal.

We were very lucky with the storm.  Its center came right through our area in northern Delaware, pretty much a direct hit, but we never lost power and there was no flooding or major damage anywhere in our neighborhood.  We are fortunate to be inland a bit; the coastal towns of NJ and DE really got hit hard, as you've probably seen on the news, and will be digging out for some time.

So, for us, the storm was actually nothing more than a break from our usual routines, a mini vacation of sorts.  Schools - and even college - were closed from Monday through Wednesday, so our college-aged son was home for an extended visit.  Our younger son had a friend sleep over on Sunday night...which turned into a 3-day visit since the governor closed the roads!  Fortunately, he's a great kid, and we didn't mind having an extra boy here.

We spent much of the week just relaxing which was just what we needed.  We played games, watched a little TV, read, ate well, and carved our jack-o-lanterns (mine's the little one)!

Both Jamie and I finally seem to be over the colds that have plagued us for weeks, except for a tiny bit of a lingering cough in both of us.  To be honest, I was really starting to worry about myself because I felt pretty awful for almost a month and couldn't figure out why.  I think now that it was just this nagging cold virus that triggered an extended crash, as they often do.  Fortunately, this one only lasted 1 month instead of 9 months like a few winters ago.  I did end up taking Zithromax for 5 days.  I went to see the doctor on Friday, before the weekend and the storm.  She said she saw signs of the beginning of a sinus infection; my lungs were still clear at that point, but I was worried about developing bronchitis since. like all of us, I am so prone to secondary bacterial infections, due to CFS's immune dysfunction.  I did go ahead and start the antibiotics the next day, and I think that is what finally helped me to kick this.

So, I am finally feeling pretty good again - back to my own normal.  I have even taken 2 walks this week since the storm passed!  Jamie went back to college on Wednesday, and the rest of us enjoyed a fun Halloween night.  We usually dress up together, in some sort of theme, for trick-or-treating.  Craig and his friend were dressed as old men, so Ken and I decided to go as babies/toddlers!  We only went to a few houses with the boys and their friends before they ran off on their own - very different from the old days when Ken had to go to every house with them!  We had fun, and now we have a big cauldron of candy that is mostly off-limits to me (thank goodness) because of my dairy intolerance...though I did go a little crazy last night with the mini Heath bars - they're just so good!!

So, I hope all of you out there in the storm's path are in as good a shape as we are and didn't suffer too much in the storm.  I know many people in NJ, NY, and eastern PA are still without power - if you are one of those, I hope you were able to find warm shelter with friends or family.

 And I hope you had a Happy Halloween!

Thursday, October 25, 2012

Getting Nowhere

I am feeling overwhelmed today about how much I need to do that isn't getting done.  This is pretty much a constant source of frustration for me, but some days are worse than others.  I've had a cold all week, plus my period, plus the usual CFS stuff, so it's been a triple whammy.  I suppose given all that, I should have lowered my expectations of myself, but that's another thing I struggle with!

Before CFS, I was such an energetic, productive, efficient person!  I took care of my family, cleaned the house, worked in the yard, played with my kids, exercised, and spent time every day writing and sending pitches to editors.  Now, most days, it seems I can barely manage the bare minimum of necessities.

I guess a big part of the problem is that neither my goals nor my to-do list really reflect my true abilities now (or lack thereof).  It is so hard to give up on dreams, and there are so many things I truly want to do, not to mention all the stuff I really have to do.  But my list just keeps growing, and it just feels more and more overwhelming.

And on weeks like this one, with so little energy to begin with, I just can't make any headway at all.  Just the basics of living - preparing meals, doing laundry, picking up kids, taking showers! - take up all of my energy (and sometimes more than I really had in the first place), leaving nothing left for the things I truly want to do.  And that doesn't even begin to include all the critical stuff that must be done, like school meetings, getting the kids to doctors' appointments, filing insurance claims, sorting out problems with insurance claims (a full-time job in itself!), ordering and filling medications and supplements each week, etc.

sigh....I know I have written on this topic plenty of times before here, but I was just feeling especially frustrated and overwhelmed tonight.  The ironic thing is that with so much time devoted to "rest," taking care of myself is actually one of the lowest priorities on my list which of course just leaves me with even less energy, in a vicious downward spiral.

I'm feeling too run-down to even think about it anymore.  I'm sure things will look better tomorrow.

Tuesday, October 23, 2012

In-Office Testing for Orthostatic Intolerance

(NOTE:  If you don't know what Orthostatic Intolerance (OI) is or you have ME/CFS but think you don't have OI, then please read this introductory OI post first.  Briefly, OI is an umbrella term that includes two conditions (and several variations): Postural Orthostatic Tachycardia Syndrome (POTS), where the heart rate goes up when upright, and Neurally Mediated Hypotension (NMH), where the blood pressure falls when upright.  Over 97% of ME/CFS patients have some form of OI, either POTS or NMH or some rarer type of dysautonomia - many people with CFS have both POTS and NMH.  To understand how a high heart rate can contribute to post-exertional crashes, read this post.  And to understand how beta blockers help and what my experience has been with beta blockers, read this post.  There, that should bring you up to date!)

Even though I have had ME/CFS for 10 years and learned about and was diagnosed with OI about 8 years ago, I was never actually tested for OI.  My son and I went to see Dr. Bell in 2004; he diagnosed my son with ME/CFS and confirmed my ME/CFS diagnosis, made by my primary care doctor.  Dr. Bell asked me if I knew about OI, and I said I had read about it but was sure that neither Jamie nor I had it, since we'd never felt dizzy or fainted.  Dr. Bell did an in-office OI test on Jamie, and I was stunned by the results - within 10 minutes of standing still, Jamie's heart rate went sky high, his blood pressure plummeted, and he felt horribly sick.  Dr. Bell explained that most people with CFS don't actually faint from OI (though some do) - we just get sicker and all of our ME/CFS symptoms get worse.  He explained to me that, based on my symptoms and his exam, I definitely also had OI, but if he tested me right then, I would get too sick to get the two of us back home on the plane.  After today's test, I now better understand what he meant!

In reviewing my Social Security application with my lawyer recently (I've been denied twice), I noticed that one reviewer of my case had written "self-reported Orthostatic Intolerance but no medical evidence."  Obviously, their reviewers don't know much about ME/CFS!  Since OI is behind most of the symptoms of ME/CFS and is one of the primary reasons why I can't work (can't stay upright for 8 hours, even just sitting), I decided to ask my doctor to make my OI diagnosis official with a simple in-office test, like the one Dr. Bell did for my son.

In preparation, I did not take my beta blocker this morning, since my purpose is to confirm the diagnosis itself (beta blockers help with POTS but they don't remove it completely - with the meds in my system, it just would have taken much longer for the test to show POTS).  I knew the beta blockers were helping to keep my heart rate down and allowing me to be much more active, but going without it this morning was eye-opening.  I strapped on my heart rate monitor as soon as I woke up and was stunned by what I saw for the next few hours.

Just walking to the bathroom, getting dressed, brushing my teeth, all raised my heart rate up into the 120's and 130's.  I was exhausted before I left my bedroom!  I tried to take it easy this morning, so as not to trigger a crash tomorrow, but even lying on the couch, my "resting" heart rate was between 105 and 115!  Since my anaerobic threshold is about 103, I was in a constant state of over-exertion, even while lying down!  I used to feel like this all the time, before beta blockers - I was constantly triggering a post-exertional crash.

I finally got to the doctor's office at 10 am, feeling like my heart was going to explode from the high heart rate and tachycardia.  The doctor who was going to do the test met with me and brought a med student along - I think it was an eye-opening experience for them both!  The test calls for the patient to lie still for several minutes, then stand up, leaning against a wall, without moving at all - no twitches, no wriggling of toes, no tensing muscles.  The med student took my heart rate and blood pressure measurements once a minute, and the doctor recorded them.

Since my "resting" heart rate started at 110, it was already sky high when I first stood up.  Even though I've understood OI for 8 years, I was still amazed by the effects of just standing still for 10 minutes.  My heart rate creeped up higher each minute.  By the 5-minute mark, I was starting to feel hot all over, flushed, and light-headed.  My fingers started to feel tingly and numb.  I was feeling more and more sick as the minutes ticked by.

And it's HARD to stand that still!  Your body just naturally wants to compensate for what is happening; I had a horrible urge to move, to flex my muscles, to crouch down.  It made me realize how much I do compensate for OI in my normal daily life, without thinking about it.  Moving around, switching from foot to foot when I have to stand in line, sitting as soon as I start to feel bad, etc.

We got to 10 minutes, which was as far as the form went, and I felt horribly, horribly sick, but the official diagnostic criteria for POTS is an increase in heart rate of 30 bpm, and I was still just a bit shy of that (of course, I'd started at 110!), so I asked if we could continue for a few more minutes, and the doctor reluctantly agreed.  He later told me that I looked so bad if I had asked for another minute, he would have said no!

My final heart rate, at 15 minutes, was 142 bpm, so my POTS diagnosis was confirmed.  However, my blood pressure hadn't dropped the way it has previously (my doctor can often see a big drop with a single BP measurement upon standing).  In fact, it went up a bit.  My regular doctor came in to discuss the results and thought it might have something to do with my body getting used to the beta blockers.  Or it could be that we needed to continue the test for longer to show NMH - which sometimes doesn't show up in people with ME/CFS until after 20 minutes of standing - but my POTS was so severe that we couldn't do that (I probably would have fainted if we'd continued).  In any case, the POTS diagnosis alone proves that I can not stay upright for very long without getting sick, and my doctor wrote a note about her previous observations of NMH in me.

When the test was finally completed (longest 15 minutes of my life!), I crouched down close to the floor and sat on a little step, with my knees up, took 2 of my beta blockers, and chugged a can of V-8 I brought with me (lots of salt and fluids for increasing blood volume).  I felt very sick and was shaking all over.  Once I was able to get up from that position, I climbed up on the table to lie down and rest.  I still had my heart rate monitor on, and my heart rate stayed above my AT for another 15-20 minutes before the beta blockers started to work and it finally began to come down.

Even though I already knew I had OI and understood it intellectually, the testing was an emotional and eye-opening experience for me.  I was all excited about it afterward, feeling like there is finally some hard outside evidence of how bad I feel on the inside!  I want to make copies of my test results and hand them out to every person who tells me how good I look or who misunderstands how debilitated I really am.  I was telling my husband about the test at dinner and asked him why he was so quiet.  He said the test results made him feel sad - more proof of how sick I was.  I can see his point, too, but I still want to hand out copies of my test results to everyone who thinks that ME/CFS is just feeling tired.

Dr. Rowe's instructions and forms for the in-office OI test are at this link. Just print them to share with your doctor.

Monday, October 22, 2012

Movie Monday 10/22

A major sick week here at our house last week.  Jamie, 18, was home from college for 4 days - a cold triggered a bad crash - and now all 4 of us have caught the virus!  So, lots of sniffling and coughing, but we have all been pretty wiped out, too - I still am today.  But the important thing is that Jamie is feeling somewhat better and is back at school.

Jamie spent his first two sick days at home catching up on all the TV shows he's missed while away!  Then he remembered how much he loves to read, and started catching up on all the books he's missed while at college.  By Thursday morning, he headed back to school...and I started to go downhill.

So, we did have some time (and lack of energy!) for a few movies this week:

Thursday night, Craig and I ate left-overs in the family room for dinner and watched This Means War, a cross between an action spy movie and a romantic comedy.  Reese Witherspoon stars as the romantic interest of two best friends who work as secret agents for the CIA, played by Chris Pine (who played the young Captain Kirk in the new Star Trek movie) and Tom Hardy.  So, there is a CIA spy plot, as well as the growing competition between the two men to woo Reese (who of course knows nothing about it).  It's kind of an odd mix of fighting, action sequences, car chases, and romance, but it was entertaining and fun.

While Ken was away on business last week, I watched Then She Found Me, a relationship movie with absolutely no action or fighting in it!  Helen Hunt stars (and directs it) as a 39-year old Jewish teacher whose husband of one year (played with boyish charm - and boyish immaturity- by Matthew Broderick) leaves her unexpectedly.  She is devastated, but a divorced father of one of her students, played by Colin Firth, provides some much-needed empathy and friendship.  The same week that her husband leaves, her adoptive mother dies, and she is contacted by her birth mother, played with wonderful joie de vivre by Bette Midler, who adds some much-needed joy and color to her quiet, dull life, but also plenty of confused feelings.  I enjoyed this slice of life movie with a gentle sense of humor and excellent acting.

Saturday night, Craig went to his homecoming dance, and Ken and I watched The Best Exotic Marigold Hotel.  I loved this movie!  It's about a bunch of older, retired Brits who are drawn in by the brochures for a hotel in India and go there, for various reasons, for a holiday.  It turns out that the Marigold Hotel's attributes may have been slightly exaggerated by its overly optimistic owner, Sonny, played by Dev Patel (of Slumdog Millionaire fame).  Though each of the visitors left the UK feeling somewhat isolated and irrelevant, they each begin to find their place in this unlikely environment.  The cast is amazing, a Who's Who of great British actors and actresses, including Judi Dench, Bill Nighy, Maggie Smith, Tom Wilkinson, and more.  Sonny's sunny disposition is contagious, and the movie is uplifting and filled with humor - I had a smile on my face through the whole thing!  Highly recommended - one of the best movies I've seen all year.

Have you seen any good movies lately?

Saturday, October 20, 2012

Talking to School Personnel About ME/CFS

My son was home from college this week with his first bad crash of the school year.  Fortunately, he started to feel bad on the weekend, so he ended up missing only 3 days' of classes and  a few important assignments.  While he was home, I was coaching him on how to manage his absence, how to inform his professors, and what to discuss with them afterward.

Since I seem to have caught his cold and am now the one stuck on the couch, I will just copy the guidelines I wrote for him this week.  I just summarized the talking points that we have always used in past 504 meeting for him and his brother.  These are specific to his situation but could be easily revised for any child/teen/young adult with ME/CFS or similar illnesses at any level of schooling.  Ideally, he would have met with all of his professors before now to cover all of these points; he did talk briefly with each of them at the start of the year, but when he is feeling better, he will meet each of them during their office hours for a more thorough discussion, something along the lines of:
Discussion Points for Accommodation Meetings

Introduction and Overview:
  • I have had Chronic Fatigue Syndrome (ME/CFS) since I was 10 years old.  It is a serious immune system disorder with genetic roots (both my mother and brother have ME/CFS also).
  • I was also recently diagnosed with Lyme disease and 2 other tick infections that I have probably had for about 6 years.  I am being treated for these infections, but the treatment can make you feel worse, especially when the infections have been present for a long time.

What To Expect/How My Illnesses Affects Me

  • ME/CFS is unpredictable – sometimes I feel pretty good and can manage like other students; other times I am completely incapacitated and can’t get up off the couch.
  • My ME/CFS symptoms include:  low energy, low stamina, needing a lot of rest, flu-like symptoms including achiness and sore throat, cognitive dysfunction aka brain fog/difficulty learning and thinking.
  • Lyme disease and the other tick infections make all of my ME/CFS symptoms much worse.  They also cause joint pain, nausea, and other symptoms.
  • I always have some symptoms, but most days, I can manage OK as long as I get a lot of sleep and rest whenever I need to.
  • However, once in a while, I experience a severe flare-up of symptoms (or “crash”) that completely incapacitates me.  These can be triggered by too much exercise or exertion, stress, or being exposed to a virus (like a cold or flu).  When that happens, there is nothing I can do about it except rest and wait for it to pass.  During these times, my cognitive dysfunction becomes very severe, and I am unable to do any schoolwork.  These crashes can last anywhere from a few days to a few weeks but usually last about a week.
  • For math and classes requiring any kind of computation:  Part of my cognitive dysfunction includes dyscalculia, a defined learning disability for mathematical computation (similar to dyslexia for reading).  This causes me to have difficulty with simple computation.  For instance, I might set up a complicated problem correctly but then transpose digits or add 2 + 3 and get 6.  The worse my other symptoms get, the worse the dyscalculia gets.  When I am crashed or flared-up, it becomes severe, making math-related work impossible.
  • For classes requiring writing:  When I am crashed or flared-up, it is almost impossible for me to write because my cognitive dysfunction becomes severe.  Translating thoughts into written words is a complex task that I just can’t manage when my symptoms are severe.

What I Need/How You Can Help:
  • If I am absent due to illness, it means I am severely ill and unable to do any work, even from home. I will e-mail to let you know of my condition and any outstanding assignments and will let you know when I am well enough to return.
  • If I have been absent for more than 1 class, I will need extended deadlines for assignments and extra time to catch up on missed work.  Once I am well enough to return to class, I may still have reduced stamina and be unable to do as much work as I normally do.
  • I need extended time for some tests, especially math or writing.  It is even better if I can split longer tests into shorter increments.  My dyscalculia gets worse over time as I work.  It is also helpful if I can use a calculator to help prevent simple computational errors due to dyscalculia.
  • If I have been absent due to illness for an extended time (more than a week), I may need to shorten and/or skip certain assignments (with your agreement) in order to catch up, decreasing the volume of work while still ensuring mastery of the subject matter.
  • Medical absences should not affect grading.
  • If I have been ill near the end of a semester, I may need to take an Incomplete in the class temporarily, to allow me some extra time to finish the work.
Any questions or concerns?

So, next week, our older son will talk to his professors about these points, and we will (finally) have a 504 meeting with our younger son's high school teachers to discuss these same things.

We usually also print and bring hand-outs for the teachers, nurses, and administrators, like these:
How about you?  Do you have any tips or suggestions for talking to teachers about ME/CFS?