I Still Want a Set of Ginsu Knives

Apparently I've been remiss in providing my faithful followers with their periodic news of the Life of Joe.  My family's asked when the next post will be up, my neighbors have wondered - but it wasn't till I was stopped in the grocery store and accosted by a blog-addict suffering thru the DTs that I realized just how long it's been since I've posted.  So here it is - your latest Dose of Joe.

In one of my earlier blogs I wrote about the fantastic meals that Betty was cooking for me.  Well, I am proud to say that, due to circumstances beyond my control, *I* am now the Chief Cook and Bottle Washer.  True, it helps that grilling season is here, but it's nothing for me to come home from work and whip up a quick chicken picata for Ryann and I.   And even Betty was impressed with my gluten, dairy, egg, soy, sugar-free banana bread (if you ask real nice I just might give you the recipe). 

I've always joked that I would like to go to culinary school just so I could learn to use knives like the guys at a Japanese steak house, but now I realize that the simple joy of combining fresh, healthy ingredients and creating a fantastically delicious meal is completely energizing in itself. 

I make a dish - and then critique it afterwards, deciding that the next time I make it I should add a bit more spice, a bit less broth.  I find traditional recipes and figure out how to make them healthy for me - and am thrilled when my version rivals that of the original.

My relationship with food has never been particularly emotional.  Food's just been as a source of fuel - I was a skinny kid who ate everything and anything in an effort to gain weight and that mindset of 'food is energy' stuck with me most of my adult life.

Until now.  Because of my MS (and because of the MS Recovery Diet) my food relationship is more mature; I go to Whole Foods and see aisles full of health, full of hope, full of the promise for a fantastically bright future for Ryann and I. 

Every meal I make, every banana bread I pull from the oven, every bowl of cereal with almond milk (unsweetened, of course) - it's all just moving my body forward on the path to recovery.  The better I am to my body, the better it is to me.

Do I "miss" any foods I no longer eat?  Nope.  Well, maybe just one: Choward's Violet Mints.  And for those of you who know you want to know how my recovery is going: slow and steady.  I can't measure my progress in terms of days or even weeks but I can tell you that I feel better than I have in years.  My energy, my stamina, my tolerance - it's all there.  Life is good.

"Life's what you make it, can't escape it."
                                                     TALK TALK

Evaporated Cane Juice is Just a Fancy Name for Sugar

It takes me a long time to get my grocery shopping done.  Always has.  Want to know why?  Because I read labels.  Even before I started the MS Diet, I was a big label reader.  I've been organic for years and since having Ryann have really paid close attention to what it is that she and I are putting into our bodies. 

And now I've really notched things up.  Because keeping focused on recovery is my absolute priority I am utterly vigilant about making sure that what I eat is a)  within the guidelines of the diet and b) healthy and nutritionally balanced (this one is key as it would be very easy to eat Betty's scones and cookies all the time. Or eat just turkey and potato chips.  Or just grapes and water.  You get the point).

***and speaking of scones, I want the world to know that I baked a kick-ass batch of apple almond scones this weekend.  By myself.  I am a culinary God. ***

So anyway, here I am, a seasoned label-reader almost three months into recovery.  I'm thinking that I've got this whole 'what I can and can't eat' thing down pat.  I wake up every day and eat a giant bowl of gluten/sugar/dairy/soy/caffeine/alcohol/legume free cereal and start my day.  Or at least I did . . .

Until last week when I read latest issue of Nutrition Action over my morning bowl of cereal.  And learned that evaporated cane juice ( a common ingredient in my 'safe' foods) is actually just another name for sugar (definitely NOT a safe food). 

Wasn't I surprised to learn that my cereal, and many of the foods I've been eating that fail to list 'sugar' as an ingredient are . . . well, not so much free of sugar.  At all. 

I was perplexed.  Befuddled.  Confounded.  How could this be?  I quickly leaped online and did a bit of research.  Here's some of what I found:

I learned that many manufacturers are pandering to the health-conscious consumer and using alternative monikers for their sweetening agents.  These sneaky bastards use terms like cane juice crystals, dehydrated cane juice crystals, unrefined cane juice crystals, raw cane crystals, washed cane juice crystals, Florida crystals (a trademarked name), unbleached evaporated sugar cane juice crystals, crystallized cane juice, and unbleached crystallized evaporated cane juice. There are also products with such names as organic dehydrated cane juice, unbleached sugar cane, evaporated cane juice, and evaporated cane juice sugar.

I read all of this and was shocked.  Stunned.  Pissed off. 

You mean to tell me that a manufacturer can deliberately mislead me, a guy who ingests sugar at the peril of losing his ability to be mobile, just because they want to make their product more attractive to the 'health conscious consumer'?!?!?!?

How about us consumers who aren't merely 'conscious' of our health because we want to lose five pounds or because we are following the latest trend or fad diet or because we just want to be cool and hip? 

How about us consumers who *cannot eat sugar* because it will cause an extreme and detrimental physical reaction?

Manufacturers are jerks.  Well, maybe not all of them.  I'm looking forward to identifying and promoting those manufacturers that have integrity, honesty and quality. 

And until I find them, I want to make sure everyone is aware that for those of us with MS, simply reading labels isn't enough.  We've got to make sure that we understand each ingredient and what it is.  We've got to take matters into our own hands - take our recovery into our own hands - and educate ourselves.

I sure learned my lesson . . . anyone want half a box of gluten free/dairy free/soy free/caffeine free/alcohol free/legume free *sugar added* cereal?

"This is what you get, when you mess with us."
                                                              Radiohead

Sometimes He Makes a Grouchy Face

Ryann and Betty hijacked this week's blog.  I was banished from the computer room while they conspired and interviewed and hammed it up for the camera:

Betty:  Tell me about your Dad?

Ryann: Well,  I love him.

If you had to use only 2 words to describe your Dad, what would you say?
 He is the best.  He's the best hugger and the best at woodworking.  Snuggle night is my favorite. Because he's puffy and cuddly and warm.

Do you know that your Dad has MS?
Yes.

What does that mean?

He has to take shots every morning. He can't walk very far because his legs will start really hurting. He has to eat good.  He can't eat some things. 

Like what?

Like chocolate.  

Would you miss eating chocolate? 

Yes!  

Do you know what MS is?

No.  I just know he has MS . . . you're writing down everything that I say! 

I'm trying to! Do you like being interviewed?

Yes.  Because it's fun.

Why does your Dad have to eat good?

Or else he will get sick or something.

What's it like when your Dad is sick?

One time someone had to come and watch me.  Because he couldn't watch me because he was in bed sick.

Do you think your Dad likes to eat good food?

Well I don't really know that but I think yes and no.

Why yes?

Because he likes your food [insert big grin from Betty] and it's healthy.  And he likes his food.

Why no?

Because sometimes I see him make a grouchy face when he eats healthy food.

Why do you think he wants to eat good food?

So he can start walking around and bringing me to the park and taking me and Abby [the Jack Russel terrier] for a walk.

What do you think your Dad thinks about having MS?

It's horrible.  

Why?
Because he can't do many things.  Like he might want to walk me to the park and have fun and take walks but he can't do it.  

But you think he would like to?

Yes!

How do you think your Dad feels when he wants to take you to the park but his legs are too tired?

Horrible.  Because it really, really would make him hurt.

Do you know the word frustrated?

Yes.  It means that you're really mad.

Do you think your Dad feels frustrated?

Yes.  

What do you think frustrates him about having MS?

Once he walked me to the park and his legs hurt.

Do you know anyone else with MS?

No, maybe my Dad does, but I don't.

Do you have any advice for someone with MS?

No, not really.  Well, I would say to help by serving good food.

Why is good food so important?

So you can feel good and you can be the best at stuff.

Is good food just important for people with MS?

No.  It's important for everyone.

Do you eat good food?

Yeah.  I eat vegetables.  And energy food like yogurt.

What else should we talk about?

<shrug>.

Have you noticed anything different about your Dad since he started eating healthy?

Yes!  He can walk better.

Why do you think he wants to get better?

So he can do stuff with me.

Why does he want to do that?

Because he loves me.

Do you love him?

Yes.  Of course!

Could you measure how much you love him?

No!  I love him too much!

What's your favorite treat in the whole world?

Lollipops and chocolate.

Which do you love more, lolli- 

My Dad!

What's something that makes you really happy?

My Dad.

Why?  There's probably a billion reasons.

I have too many and I can't pick.  Because he tucks me in at night.

Do you think your Dad loves you?

Yes, of course he does!

How can you tell?

Because he kisses me every night.

If you could whisper something really sweet to your Dad, what would you whisper?

"I love you . . . so much"

xoxoxoxoxoxoxo


                  There's a party in my tummy
                  So yummy, so yummy . . .
                                             Yo Gaba Gaba

Would You Care For Some Whine To Go With That Cold??

How was your week?   Mine started out kind of rough:

The day after my last blog post went up I woke up feeling like dirt.  My legs were numb, my vision was screwy, my joints ached, my focus was off.  The fatigue set in and didn’t let up (and let me explain – MS fatigue is a bit like walking around with two or three heavy, wet, wool blankets draped across your body.  Fun, right?!?).   I was a mess.

My first thought was “oh no – I’m having a relapse!”  Then I thought “oh no – I ate something that I shouldn’t have!” (even tho I knew that wasn’t the case, I was just so exasperated to be feeling like shit again after feeling so great for so long I was ready to tell myself anything).

I got Ryann off to school and was busy sitting around feeling sorry for my sorry-ass relapsing self when Betty called.  Almost right away she commented that I sounded stuffy and congested. 

“Yea,” I said, “Ryann’s had a cold for the past few days and now I have it . . . but more importantly, I woke up feeling like shit, I hope it’s not a relapse, I’ve been doing so well and now I’m so disappointed and maybe it’s something I ate but I don’t know I just hope I’m not going backwards waa waa waa”

Betty cut me off mid-whine and, in her usual succinct manner (did I mention she’s an attorney? She’s pretty keen with these things) asked if I thought maybe it was simply the cold that was causing an exacerbation of my symptoms.

I wanted to believe her.  It sounded reasonable.  It was more than likely the case. 

But you know, when you’ve lived with MS for so long, and when you are so used to your body just giving out and letting you down, it’s kind of hard to believe that “it’s just a cold” and you’ll “feel better in a few days”. 

Because with MS, when your symptoms set in, you usually don’t feel better in a few days.  And if you are lucky enough to actually have your symptoms subside months after they’ve started, they almost always leave some lingering reminder like incessant tingling, numbness, achiness, pain, loss of motion – you know, quirky fun stuff like that.

So as much as I wanted to believe Betty’s theory – and as much as I logically knew it made sense that whatever virus I’d caught from Ryann was probably the cause of my overall dirt-like status - it was just so hard to believe.  Could it really be that simple??  Could I just have a cold?

I took it easy for a few days, drank lots of fluids, dosed up on Vitamin D and good, healthy food and by the end of the week I was texting Betty “I feel freaking fabulous!”

Turns out I had a cold.  Turns out that I’m just like the rest of the human race and had a regular old, run of the mill cold.  Turns out that I didn’t have a relapse, I didn’t go backwards, my body didn’t give out on me and I did, in fact, feel better in a few days.

That’s pretty big.  Not much is simple when you live with MS.  But here I am, recovering from MS and I had a cold and it went away.  Simple as that.

Life is good.

"Life shifts up and down everybody knows it's wrong."

                                                                    --Skinny Puppy

A Day Late and a Dollar . . .

This blog post is a day late - and do you know why?  It's because I've been busy. 

And do you know why?  Because I'm a finish carpenter - among other things - and Spring is always a busy time.

Over the past few weeks, I've either been working in my shop or out on jobs.  And when I'm not doing either of those things, I've been working up estimates for clients in addition to running my second business, computer drafting, and getting started on my life-long goal of being an architect. 

I'm working 10+ hours a day in addition to putting in my Awesome Dad time with  Ryann - and my housekeeper's been on vacation for a month and the place still looks pretty good.  

Read that again.

Now read it a third time.

Did it sink in yet?

I am working 10+ hours a day, being an awesome Dad to my daughter and keeping up with my house. 

And do you know why?

It's because my body is recovering and I feel so freaking fabulous!! 

Two months ago, I wasn't working at all and now I'm working like crazy.  Two months ago, I didn't think I'd ever really become an architect and now I'm applying to the University of Penn (if you know anyone in admissions or the School of Architecture, please put in a good work for me).

I'm not saying all of this is easy - it's not.  At the end of the day I am definitely tired and need to sleep.  At the end of a couple of days I am wiped out and need to sleep a lot (which is why this blog is late - I was in bed about 3 minutes after Ryann last night.  There was just no way my brain or body was going to do anything more).   It isn't easy, but because I am recovering, it is all possible.

I've had some questions about the details of my recovery, so here you go.  Please note that the stuff I list here isn't even the tip of the iceberg when it comes to all of the perks MS has brought me - these are just the areas in which I've noticed the most dramatic improvement.

My left foot is no longer completely numb.  I can move my foot and toes freely and without pain.  When I first regained motion in my toes it hurt a good bit.  Not any more.

My right eye is getting better.  For a long time, the vision in my right eye was consistently blurry with the bonus of always feeling like there was sand in my eye.  The sandy feeling is not as bad and my vision is slowly getting better - and the blurriness is more intermittent now.

My energy level is through the roof.  Although I need to pace myself and make sure I'm eating often, I no longer feel like I need to nap about 15 times just to make it through the day.

My skin looks great.  Betty commented that I was 'glowing' after the first week of recovery, but now it seems everyone is noticing.  I've even had guys tell me that my face just looks 'healthy' (and for a guy to say anything, you know it must be obvious).  Of course, I can't help but wonder just how bad I looked pre-recovery . . . but I digress.

My mental attitude is phenomenal.  My optimism and belief that the world is a bright, wonderful place and that my future is awesome are infectious.  One of the fabulous side effects of MS is depression, which can really screw with your life.  Thankfully, I have never had issues with depression per se, but there have been periods of darkness.  Not any more.

So there you have it.  Your latest dose of Joe is posted and in your hands.  Have a fabulous week - I know I will!

Life is good!

Falling down, I've reached my highest line. 
I've got a good idea what breaks you makes you shine.
                          --The Catherine Wheel

Marathon Men and the Women Who Love Them

Remember a few posts back when I said that when I wake up in the morning I feel ready to run a marathon?  Since I wrote that post, the idea of a marathon has been rattling around in my head. 

The term can mean so many things depending on the context in which it is used: Betty plans to run an actual marathon (why?); back in college, I enjoyed marathon "study" sessions; living in California I worked lots of marathon double shifts at Fotokem; Ryann really loves when Nick Jr. devotes an entire day to a SpongeBob marathon. 

The whole idea of a 'marathon' implies patience and endurance and the ultimate achievement of something pretty awesome.

I may never run the Boston Marathon, but I sure am in one hell of a marathon with my MS recovery.  Think about it:

Patience - While I have seen great improvement in my symptoms, I know it may take years to achieve full recovery.  I am patient in allowing my body the time it needs to un-do the damage done by MS;

Endurance - All this being patient requires a sturdy dose of endurance.  I realize that I must endure various stupid MS symptoms until my body has recovered enough to no longer recognize them;

Ultimate Achievement - Recovery. I know that I will recover;

Something Pretty Awesome - see 'Ultimate Achievement'.

I've read more about MS and the various paths to recovery since starting this blog than I had in the 7 years leading up to its inception.  It is inspiring to read about real people recovering and regaining the lives they had long ago written off. 

Although it takes time and dedication regardless of recovery path, real people are really recovering.  Real people are getting out of wheelchairs and walking again.  Real people are free of spastic limbs, impaired vision, crushing fatigue.  Real people are participating fully in life. 

I hope that this blog can provide even the tiniest bit of that same inspiration to anyone touched by MS.    To let people know that with patience and endurance, we can cross the finish line and achieve the ultimate goal of recovery.

I received a fabulous message from a man I've never met who lives with MS.  He asked if I think he can begin to recover as well.

My answer was that I don't just think he can - I believe he can.  I truly believe that anyone with MS can take control of their lives and begin to recover.  To what extent - I can't say.  It's a marathon, to be patiently endured for as long as it takes. 

Enjoy the marathon.  Enjoy life.

        Fiery rain and rubies, cooling sun

       now I see that my world has only begun.

                                           --Gene Clark/This Mortal Coil

Cookies

Just over one month ago I decided to recover from MS.  I have learned so much about myself, my body, health and nutrition.  Slowly but surely, my symptoms continue to improve.  I think of my pre-recovery diet and shake my head - it's no wonder I felt like crap most of the time.  Since changing my diet, I have to say I really don't miss any of the stuff I ate 'before'.  Except cookies.

I love cookies.  I love snacks and sweets and chips and puffed corn products.  Anyone who's ever been to my house knows that my pantry is usually filled with every kind of goodie imaginable.  Now that I'm in recovery, I've had to forego all of my regular snacks and find healthy alternatives.  That's been pretty easy when it comes to crunchy stuff (sweet potato or beet chips, almonds and pumpkin seeds - stuff like that).  But I hadn't yet been able to find a cookie that actually looked, felt and tasted like a good old-fashioned home made cookie.

***Disclaimer - I do not bake home made cookies.  I have been known to bake pre-made cookies or stuff from mixes.  But now I leave the real baking to my girlfriend who, in consideration of preserving her anonymity to ensure compliance with the Witness Protection Program, I shall refer to in this blog as 'Betty'***

So Betty knows that I just love chocolate chip cookies without the chocolate chips. (They are awesome).  I've mentioned before that Betty's following the diet along with me and so her pantry is stocked with all of the gluten free,  dairy free, egg-free, soy-free, legume-free stuff a baker such as Betty might need.  She comes up with recipes and tests them out on her kids.  We figure that if kids like what she's made, it's a pretty good sign that the stuff is tasty.

Betty has been working on a cookie for me and this weekend, she came up with a really good one.  A really, really good one.  'Really' good as in 'Could-Make-a-Girl-Scout-Cry' good.  In the zeal to create the perfect chipless chocolate chip cookie, Betty hit on the idea of using almond butter to keep the dough from crumbling.  The result was pure magic.  Betty ate about 8 cookies right off the cooling rack.  I exercised a bit more restraint and was able to wait till they were off the rack and on plate.  And then I ate a dozen or so. 

Six weeks ago, who would have thought?  My body is recovering, I feel better than I have in years, the future is amazing . . . and I still have cookies.

I love cookies.  Life is good.


Bonus:
Here's the recipe if you want to bake something for when you invite me over for tea sometime:

1 C Spectrum Vegetable Shortening (no trans fats, made from organic palm oil)
1/3 C almond butter
2 T pure molasses
1 C Xylitol sweetener
2t vanilla

Beat together.  Then add:
2 servings Egg Replacer

Beat again.  Then add:
1 C gluten free baking flour
1 1/4 C almond flour
1t baking soda
1/2 t salt

Blend all.  Bake at 350 for 8-9 minutes.  Let cool a few minutes before transferring to a rack.  (You can get all of the ingredients at a health food store, in the health food section of a grocery store, or at a store such as WholeFoods)
 

Pickup Betty . . . Betty pickup
                     Laverne & Shirley