Respected and Beloved CFS Advocate Dies

I have written here before about Dr. Rich Van Konynenburg's Simplified Methylation Protocol.  This tireless researcher devoted years of his life to taking a complex treatment protocol and creating and testing a simplified version appropriate for people with ME/CFS.  He just recently updated the protocol once again, based on feedback from those who have tried it.

On Wednesday, this sad note was posted on a discussion group by Rich's wife:

"Rich died early this morning. It appears that he suffered a massive heart attack in his sleep. He did not have a history of heart disease, so this was sudden and quite unexpected. It doesn't seem possible to me that Rich is gone. I am at a loss to express how profoundly I will miss him (I already do!).

I am trying to figure out how to begin notifying everyone who will want to know. Please feel free to repost this message on any forum or group where people who interacted with Rich will want to know of his passing.

Diana Van Konynenburg"

My own son, Jamie, has been using parts of Rich's protocol to try to improve his overall level of functioning and ability to tolerate his Lyme treatment (with some success).  When I e-mailed questions about the protocol to Rich, whom I had never met, he answered my note - in great detail - and continued to advise us whenever I had questions.

For those interested in Rich's theories, this article on glutathione explains some of the basis behind his theories. 

The ME/CFS community has lost a great researcher and advocate.  May he rest in peace.

One Day At a Time

Once again, sorry for being absent so much lately.  It has been a difficult week, and I have had no time or energy for blogging (so, also sorry I haven't been visiting blogs lately!).  So a quick update...

Craig recuperating with his new little friend, a pet hamster

My younger son had knee surgery on Monday.  It was arthroscopic, but the surgeon did a fairly extensive repair, so Craig's leg is in an immobilizer and he is on crutches for at least two weeks.  I expected him to bounce back pretty quickly, but the brief surgery really took a lot out of him.  He is still in quite a bit of pain and still needing pain meds, so he has also been very groggy.  Mostly, he has just been exhausted all the time.  His CFS is fairly mild and normally well-controlled with Florinef - he even plays soccer - but stuff like this knocks him out.  Just being on crutches for a couple of weeks last spring really wore him out - he'd go to school one day, then crash for the next two days.  So, although we are hoping he is able to go to school on Monday (he really hates missing school), we know this could be a rough ride for him for several weeks.

Our newest family member

I felt good on Monday - even took a short walk around the parking lot while Craig was in surgery - but crashed severely for the next two days.  It might have been the stress (though the surgery was quick and went well) and the running around or perhaps a viral trigger, but I was pretty useless for much of this week.  I am doing better now, but all of my energy has been focused on taking care of Craig - helping him get around, keeping track of his meds, bringing him food (14-year old boys eat constantly!), and changing his ice packs.  He and I have had a very low-key week here - lots of naps and TV.  We did get out of the house today because he's getting a little stir-crazy.  We went out to breakfast, and then I surprised him with a stop at the pet store for a hamster - a little buddy to keep him company while he recuperates!

I did (finally) write my testimony for next week's CFSAC meeting.  I don't know yet if I got a speaking slot, but at least my written testimony will be part of the record.  This time, I focused on the need for urgent education of medical and educational personnel and illustrated that with some horror stories from our online parents' group.  I am sure each one of you has your own horror stories, too; I am hoping this will have an impact on the committee members.  I'll post my testimony separately.

OK, nap time after I finish the lunch dishes. 

NOTE:  If you or a loved one with ME/CFS needs surgery, be sure to share these guidelines with your surgeon and anesthesiologist beforehand.  The staff at the orthopedic center Craig went to was great and very understanding about the issues with OI.

Mourning Losses

I have had ME/CFS for ten years now.  You would think that I would be past all the disappointments and be done mourning the life I once had, that I would have adjusted by now to this new life filled with restrictions and limitations.  And I mostly have, but once in a while, the grief sneaks up behind and takes me by surprise, feeling almost as fresh as in those first years of loss.

I am generally quite happy and content these days.  That is simply my outlook on life.  I have always been happy with my life, during each of its unique phases, bearing up fairly well even during that devastating period when I first got CFS in 2002, mourning and then moving on.

But this has been a difficult week for me.  Three times this past week, I was out in public and suddenly felt so horrible, so fragile that I had to flee and felt as if I barely made it back home in time before collapsing.  This is unusual for me these days, in part because of medications and in large part because I so carefully monitor and restrict my activity level, living a very cautious life.  All the caution in the world didn't matter this week, though, and I crashed badly during my book group meeting Wednesday evening, as I wrote here earlier this week.

I have been trying to rest and recover, but it is slow going.  Some emotional upsets (probably caused in part from my crash - the emotional and physical effects of CFS are a never-ending cycle!) on Thursday set me back again, then I spent 90 minutes yesterday meeting with my disability lawyer, trying to prepare for my final disability hearing in December.  That was, again, both physically and emotionally exhausting, as our discussion focused mainly on how to prove that I am as sick as I claim to be (more on that later).

This morning, I was still feeling pretty crappy but trying to make the best of it - sitting out on the deck with a good book - when that sense of mourning just snuck up on me again.

The weather is gorgeous today.  We were supposed to go camping but had to cancel, in part because of how sick I've been this week (another sore point - the Social Security Administration thinks that since I can go camping, I can work).  Friends on Facebook are posting about all their fun activities this weekend, and I am feeling isolated and trapped.  Our local Oktoberfest is this weekend; we used to go every year with friends, to eat German food, drink beer, and watch the kids play the games and ride the rides.  There's no way I could manage a festival today.  The weather is perfect.  It used to be our family tradition to take a hike every weekend.  That's not even in the realm of possibility today!  Our house and yard are a mess, but I can't help with those.

Despite the sunshine, I am feeling a bit gloomy, just missing the old, active me.  It seems that with CFS, the mourning never really ends - though, of course, it is much rarer these days.

I am feeling a bit better, just writing about it.  It is so good to have a place where I can express these feelings, a place where everyone understands, where I don't need to worry about making anyone feel uncomfortable in the face of the realities of my illness.  Thanks for listening.  I am heading back out to the deck, to my very comfortable lounge chair and my very good book.  Hope you are enjoying your weekend!

Hitting the Wall and Craving Comfort

I hit the wall last night during a book group meeting and had to abruptly leave in the middle of our discussion.  I literally ran to my car, feeling as if I would fall apart if I didn't get home, to my bed, as fast as possible.  I felt as if my entire nervous system had short-circuited.   Up until then, it had been a pretty normal - even good - day for me.

Tuesday's nasty wet weather had passed through, leaving my extra aches and exhaustion behind with it, the sun was shining, and I felt good.  I felt like myself - able to concentrate and focus on what I wanted to do, able to write, even a bit energetic.  I  took a longer walk than usual - a whole 45 minutes!  I wore my heart rate monitor and carefully stayed below my AT, but it was so nice to be out in the sunshine and feeling free.

I took my daily nap after lunch and jumped up at 3:15 to go meet my son at his soccer game.  I was a little tired, but that's normal when I first wake up.  I found the school and saw that their soccer field was a long, long walk from the parking lot, so I carried my chair and my bag over there and sat to watch the end of the game and chat with another mom.  Craig and I came back home, and he wanted to watch TV, so I went up to my bedroom so I could finish my novel for book group.  As I crawled into my bed, I realized I was feeling pretty achy, but I figured the rest would help me. 

At 6 pm, I still hadn't finished the book (20 pages to go!), but it was time to meet my two closest friends for dinner.  I was a bit worn out but attributed it to hunger and the late hour (we usually eat an early dinner to address Craig's and my low blood sugar).  I drove over to the restaurant in my old VW convertible, enjoying the mild weather and fading sunshine.  I thoroughly enjoyed dinner with my friends and getting caught up.  I felt the beginnings of a headache but attributed it to waiting too long to eat.  I took 1 Sudafed, hoping it wouldn't be too much too late to disturb my sleep, and the headache faded a bit. 

The beginning of the book group meeting was great.  We had a nice turn-out, and everyone had enjoyed the book.  The discussion was lively and interesting.  I felt fine at first, but gradually, symptoms began creeping in.  My headache started to worsen.  My legs began to feel achy - just a bit at first, then worse and worse.  My face started to flush and I felt hot all over (obvious OI symptoms).  I tried elevating my legs, I drank lots of water, but nothing was helping.  I was watching the clock now.  We had started to discuss choosing our next book, so I thought I could make it to the end of the meeting.  And, then, suddenly, I couldn't.

That phrase, "hitting the wall," is the perfect description.  I just suddenly felt as if I could not stay in that chair for another moment.  I abruptly stood up, grabbed my bag, made a quick apology, and fled.  The top was still down on my car, and it was a cool evening, but the chill felt wonderful to me.  I tore out of the parking lot and drove home as quickly as I could.  I took big gulping breaths of the cold night air, feeling as if I'd been suffocating and suddenly had oxygen again.  I got home in record time and went right up to bed.  I wanted to get into comfy clothes but couldn't even manage that at first.  I crawled into bed and under the covers and started sobbing uncontrollably, both from pain and discomfort, as well as relief.  I was shaking.  I've never been so glad to be home in my life.

When I calmed down a bit, I limped over to the dresser, peeled off my clothes, and pulled on my oldest, softest pajamas and big fluffy socks.  I crawled under the covers again and picked up my book, thinking over and over how glad I was to be home.  I was craving comfort - anything warm and soft.  I just wanted to be a child again, to have someone put their arms around me and comfort me, tell me it was OK now, I was safe, and pat my back.  I asked my husband for a cup of mint tea and slowly relaxed.

I woke this morning feeling as if someone had thoroughly beat me last night - sore and achy all over, exhausted.  I am still craving comfort - wishing my mom were here to make me homemade custard like she did when I was a kid.  I'm wearing soft yoga pants and an old t-shirt, bundled up in a fleece blanket, and still aching all over.

It was an unusual experience for me just because I can normally read the warning signs better than that.  Even though the symptoms came on gradually over several hours, they seemed to come from nowhere.  This is THE defining characteristic of ME/CFS, right?  These sudden crashes - that is the only word to accurately describe it, a crash.  Who knows what caused it this time?  The long walk in the morning?  Doing too much all week?  The extra walk at the soccer game?  Or perhaps even a viral trigger my son brought home from school - he spent 2 days earlier this week in a mild crash from being exposed to something at school.

Sometimes, it doesn't matter what caused it (and certainly, you can drive yourself crazy trying to figure it out), but isn't it amazing that this crazy illness can still surprise me like that after 10 years?  Ambushed.

Maybe I could make custard using coconut milk....

Movie Monday 9/17

Now that school has started and Ken and Craig have to get up so early (not me!), we don't have much time for movies, but Ken and I did watch one this weekend:

• Crazy Stupid Love, starring Steve Carell and Julianne Moore as a married couple who are separated.  Emily (Moore) asks Cal (Carell) for a divorce in the opening scene, and he is crushed and lost without her.  He's also the quintessential dorky dad, until he meets Jacob, a young, cool guy, played by Ryan Gosling, who gives him a manly make-over.  Though Cal gamely tries to start over (and has some success with his womanizer lessons!), he still yearns to have his family and his old life back.  Meanwhile, his teen son is struggling with his own love problem - a crush on the babysitter.  It's a touching drama but also has lots of funny moments, as things get more complicated and the characters' lives entwine in unexpected ways.  A scene toward the end where it all comes to a head is hilarious!  We enjoyed this one, more than I expected.

Have you seen any good movies lately?

Gluten-Free/Dairy-Free Diet Update

Well, it has now been 7 weeks since my son, Jamie, and I started a gluten-free and dairy-free (and oat-free) diet, on the advice of a biochemist/dietician we have been consulting for Jamie (see previous post for the details).

Jamie says he has not noticed any difference.  He is definitely running out of patience for the restricted diet!  He's been at college for three weeks now, and, although his college has an excellent gluten-free diet program, it is tough to be 18 and watch all your friends eating your favorite foods when you can't.  He says his GI symptoms actually worsened a bit, but that is almost certainly due to the change to on-campus eating.  Though he is eating healthy foods, it is a different diet than at home, and his GI system is always sensitive to changes (like when we travel).

As for energy and overall well-being, he is definitely doing much better, as I reported earlier this week, though we think that is mainly due to starting beta blockers.  It is impossible to tease out individual cause and effect, as he started the diet 7 weeks ago, started beta blockers 4 weeks ago, and we have added a bunch of new supplements (on the advice of the same specialist) over the past 3 weeks.  However, during the first 3 weeks of the dietary restrictions - with no other changes - we didn't see any change.  It is possible, though, that some of his improvement is due to the dietary changes and "unblocking" his methylation pathways.

As for me, I have definitely not seen any improvement overall nor in energy, but my GI symptoms are much better.  I have grown accustomed to constant GI discomfort - cramps, gas, bloating - every day (I am usually OK in the morning, then the symptoms hit me hard in the afternoon and evening).  These are almost completely gone on this diet!  Now, I'm not sure whether eliminating gluten (and oats) has anything at all to do with this improvement or if it is just because I have been so much stricter in avoiding dairy.  I developed a dairy-intolerance when I got CFS, but over the years my habits have slipped, and I was "cheating" a lot!  Now it is clear to me that I need to be strict about it, and that my problem is not just lactose but likely casein (a milk protein).  On the other hand, I have been a bit constipated on this diet, despite lots of fruits and veggies - my body is definitely missing my daily oats and whole grains!

So, that's where we both are.  Jamie agreed to try this diet for six weeks and it has now been seven, so he wants to quit.  I am hoping to convince him to go slowly and gradually when adding foods back in so that we can really watch the effects.  It has been a struggle to get him to continue the daily record-keeping on his own - I have done it for him for the past 8 years!  But he will be home today for his Sunday morning gluten-free pancakes and his medicine refills, so hopefully, I can convince him of how important it is to keep careful records while transitioning back and to go slowly.

As for me, I will probably try adding oats back in first because I really miss my morning oatmeal!  Being gluten-free doesn't bother me that much, so I may continue it - not sure yet.  I do know I definitely need to remain strict about the dairy-free part.

I meant to list some of our favorite gluten-free and dairy-free foods also, but that will have to wait for another post later this week - this one is too long already!

I am interested to hear about other people's experiences with restricted diets - anyone experience significant improvement?

Time to make the pancakes!

Sunday Evening Update:  Jamie decided to hang in there with all the diet restrictions for 1 more week since we are changing something else this week (adding D-ribose and creatine back in - he has been forgetting to take them since he started college!).  He says he wants to start adding foods back in when there are no other changes going on so we know for sure the diet didn't affect him and he never has to do this again!  lol  I will let you know how it goes...

Movie Monday 9/10

 I am determined to try to stay on top of my blogging this week!  So here is my Monday post...on Monday! Woohoo!  I am so proud of myself.

For those interested, here is a quick update to yesterday's update on Jamie and college.  He stopped by this afternoon to pick up a math assignment he left here yesterday (CFS/Lyme brain fog or normal teen absent-mindedness?  Always hard to tell!).  We talked a bit about how he's been feeling and whether various new things we've tried are helping.  He said he is doing MUCH better than he was a month ago and was better last week than the week before.  He thinks it is mainly due to the beta blockers he started the week before college.  He has noticed better stamina, better sleep, and the ability to do more without crashing.  It produces a positive domino effect, just like when I started beta blockers, because the more you can do, the more your muscles become conditioned and better able to circulate blood to heart and brain, furthering improving your overall condition.  He was, however, developing one of his Lyme-induced light sensitivity migraines, so he was rushing back to campus to take his migraine meds (which are also working well!).

Anyway, movies.  Ken was gone all week, and Jamie was in college, so we didn't watch many movies, but I squeezed in a chick flick for myself!

He's Just Not That Into You was a typical all-star cast romantic comedy, but I enjoyed it.  Good escapism fun.  The cast includes Drew Barrymore, Scarlett Johansson, Jennifer Aniston, Ben Affleck, and Jennifer Connelly, as well as other familiar beautiful faces.  It is about a bunch of young people (late 20's/early 30's?) all struggling to find the right person.  Some are dealing with the dating scene, and some are married or committed (with varying degrees of success).  All are trying to find happiness.  Interspersed among their stories are brief clips of real people (I think?) talking about their own relationship ups and downs.  It was fairly light and fun and quite well done - an enjoyable evening spent on my own.  Jamie saw a bit of it yesterday on TV and said he'd like to see it, too.

Less successful was my attempt to watch an independent film, Starlight and Superfish; its DVD cover was filled with awards from various film festivals.  Its description sounded like it was a thought-provoking comedy, about a man stuck in a sort of purgatory after death who must face various aspects of his life before it is determined whether he will move forward to heaven or hell.  In reality, it was just really weird!  It starts with this accountant guy who can't figure out why he can't leave his apartment or open any cupboards.  Then a British glam rock group shows up (I am not making this up!) to provide guidance to him on his spiritual journey.  The whole thing is very cheaply made, with poor production values, and just completely bizarre and surreal!  I only made it through a half hour before deciding I couldn't take anymore.  Then I immediately sent a message to my old high school and college buddy who used to watch weird movies with me (anyone ever seen Liquid Sky??)  Crazy.

Have you seen any good movies lately?

Update on College Life with CFS

Oh, man...it's been ages since I've posted anything here AGAIN.  Sorry about that.  Even though the kids have been back to school, I have still been overloaded, battling a crash, plus a lot of running around because my younger son, Craig, hurt his knee (again) during the first week of soccer practice - doctor's appointments, MRI's, running medical records all over town, trips back and forth to school, etc.  Plus, my husband has been away for a week so I've had to get up at 6 am every day and do everything on my own.

Anyway, lots of you have been asking how Jamie is doing away at college (thank you for thinking of him!), so I thought I could maybe squeeze in a quick update.  Oops...time to get dinner ready...

OK, now that update...really...

So, Jamie has been in college for two weeks now, and things are going really, really well so far!  He is only taking three classes, and he says that is definitely helping.  He says cognitive functioning has been pretty good - perhaps some of his new supplements are helping (more on that complicated situation in another post).  Three days of the week, he only has one class, at 9 am, so he can rest for the rest of the day.  He has a single room, so he can still go to bed early - I think around 9 pm most nights (definitely NOT the norm for most college students!). 

Cool Gel Mat from Solutions catalog

The heat these first weeks has been a challenge for him because none of the freshman dorms are air-conditioned, and the buildings (and their electric systems) are so out-dated that personal a/c units are not allowed - students can't even have a fridge and microwave both running at the same time!  His dorm room is tiny, with just a small window and little breeze since it opens onto a courtyard.  He said his second week was made more bearable by the Cool Gelmat I ordered for him from Solutions catalog.  And, as of today, the temperature has finally cooled off here!  It's supposed to be highs only in the low 80's this week and lows in the 50's and 60's plus much drier!  That should help him a lot.

The high points?  He says the best things about college are the freedom and being near his friends all the time.  This poor kid has been practically chained to the couch for the past 18 months, mostly housebound and isolated.  Another benefit of going to college here in town (he's 20 minutes away) is that lots and lots of his friends are there, too - kids he's been friends with since preschool in some cases!  Best of all, his two closest friends - best friends since kindergarten - are there with him, each just one dorm building away.  So, he says, he loves being able to hang out with friends every day; even if he's not feeling well, he can spend a little time with friends in between resting, and he eats his meals with his friends every day.

For now, he is coming home at least once a week, on Sundays, so that I can refill his weekly medicine boxes (6 of them completely full!) and give him his B12 shot.  Last weekend, a 3-day holiday weekend here, his grandparents were visiting from out of town and it was incredibly hot and humid, so he slept here four nights in a row and spent a fair amount of time with us, but he still had the energy to drive back and forth to campus on Saturday and Sunday to spend some time with friends, too.  He was badly crashed on Monday and Tuesday (probably too much Frisbee with friends Saturday evening!), but he went back in time for his first class on Tuesday and says he felt better by Thursday morning.  This weekend, he only came home for a few hours today!  Just long enough to eat gluten-free pancakes, do laundry, let me refill his meds and give him his shot, and take a shower in his own private bathroom!

It is great to see him so happy and full of life after this long past year of suffering!!  It really feels like a miracle.  His stamina is still quite low, and we have a long school year ahead.  He says everyone in the dorms is already getting sick, so I sent him back with antibacterial wipes and hand sanitizer today!  Even in his very best years (and we are far from those), he still missed 25-30 days of school, usually in 1-2 week long crashes, so we know that is ahead.  But, he is making a good start and for now, he is happy and enjoying himself and being an almost-normal 18 year old, which is far more than we expected a few months ago!

Jamie (in gray) at home last weekend, enjoying a card game with us and his grandparents.

Movie Tuesday 9/4

Whoa, a whole week slipped by without a post - and Movie Monday is now Movie Tuesday...almost Wednesday.  Sorry for the absence.

Jamie started college last week and Craig started high school, so I finally had the quiet solitude I've been desperately waiting for...and I was sick all week!  I went into a bad crash last Tuesday that lasted all week - no idea why, though some of us locally have been wondering whether it's our rotten weather.  So instead of writing and catching up like I'd planned, I was in bed reading.  It was so bad last week, with continued severe aches in my legs into the weekend, that I was starting to think I had Lyme again (or still).  Then we had houseguests all weekend!

But I was better yesterday and today and have my fingers crossed that it was just your basic unexplained, random CFS crash.  We will see.

Anyway, it's been really busy around here, but we did squeeze in a couple of older movies the past two weeks:

• We watched Poltergeist with the kids before Jamie went off to college.  They loved the classic ghost story - it really held up despite its age.  And though Ken and I both saw it back in the 80's, we enjoyed watching it again...and seeing how young Craig T. Nelson was!  Lots of spooky, heart-pounding suspense.  As Carol Ann famously says in the movie, "They're heeere!"
• This weekend, with my Dad and his wife visiting and Jamie home from school, we watched Men in Black II.  Like the first movie, it was just a fun bit of escapism - silly alien plots, lots of action, and plenty of laughs with Will Smith and Tommy Lee Jones.

Have you seen any good movies lately?