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

Ryann's Dad

I thought I'd switch things up this week and talk about something other than myself.  So I decided to write about my other favorite subject (actually, my most favorite subject):  my daughter.

My daughter knows that I have MS, but I'm not really sure she knows what that means.  I don't think it really matters to her.  I'm just her Dad. 

She knows that I get tired really easily, that I need to sleep a lot, that I can't go for walks around the neighborhood on beautiful summer nights.  She knows that when we go to the playground down the street, I need to drive us there because there's no way my legs will get me there and back. 

She's used to seeing me give myself shots in my leg or stomach three times a week.  She's used to watching me lose my balance and be clumsy and fall into things.  That's just me.  I'm just her Dad.  I was diagnosed a month after she was born and she's never known any different. 

And the beautiful thing is - she doesn't care.  In her eyes, I'm just her Dad.  Simple as that. 

But the thing is, I care.  My seven years of fatherhood have been clouded with MS.  I can't take nature walks with her, dawdling through places like Grounds for Sculpture (have you been there?  It's an awesome place) for hours on end.  We don't belong to the community pool.  I can't play tag in the yard or go on bike rides or just run around and be crazy. 

Everyone says you need a lot of energy to keep up with kids - and that's true.  But it's also true that MS sucks the energy right out of you, sometimes leaving just crumbs behind.  Crumbs aren't enough when you're a parent.

Till I decided to take charge of my recovery,  I suppose I just accepted that my daughter would grow up with a Dad who had limitations.  And I suppose I just hoped that it would be a very long time before she realized that while other kids have Dads who can do lots of cool stuff, she is stuck with an MS Dad.   That sucks.

I've said that this diet is giving me my life back, but it's doing so much more.  Because I've taken charge of my recovery, because I am recovering, I not only get my life back:  I get to be Ryann's Dad. 

For the first time in her life, we can make plans to go to the zoo this summer - and this time we will walk around the entire place until she's ready to go home.  I will take her to art museums, to country fairs, on long bike rides, we'll play ball, we'll play tag, we'll rake leaves in the fall.  We'll hike in the mountains of California, just like her Mom and I did long ago. 

I'll stand and cheer when she walks across the stage and gets her diploma.  And someday - after she's been to college and established a career for herself and I've met the guy and decided he's good enough for her - someday I will walk her down the aisle.

Life is good.

For you alone, you are the everything...
                                                          R.E.M.

Today is the Best Day Ever!

I was reading thru some postings on the MSWorld website this morning and this line jumped out at me:

"It seems there is NOTHING anyone can do about MS, there is no cure RIGHT NOW... " 

Yes, there is no cure right now.  That sucks.  But there IS something anyone and everyone can do about their MS -  it's called 'change how you eat'.

Having followed the diet for three weeks now, I realize that I am becoming very in tune with my body and the signals it sends.  I'm beginning to understand how important it is to listen to my body because when I do, I am able to better control my MS symptoms.

I've figured out that my body knows it needs fuel long before I actually feel hungry.  The first few weeks of the diet I ate often, as suggested, but I waited till I was hungry to even start thinking about getting myself some food.  And by that time, I was tired, my legs were heavy and my balance was way off.  Then almost as soon as I had eaten, those symptoms would disappear and I would feel re-energized.  Until I got hungry again, felt tired, etc. And so the cycle went.

It took me till the end of Week 3 to figure out that my body was telling me it needs a consistent supply of energy to keep me feeling good.  Now I make sure that I'm eating something every 2-3 hours and I keep food with me - easy stuff like almonds and pumpkin seeds or a blueberry muffin, anything portable - so that I can keep my fuel supply consistent.

***Did I just say Blueberry Muffin?? Yes, I did.  A delicious, gluten free, dairy free, soy free, sugar free, egg free homemade blueberry muffin.***

Keeping myself consistently fueled has really made a difference.  I have more energy and just feel better overall.  I don't experience the lows and highs of fatigue and weakness throughout the day.  I can go an entire day feeling great and only get 'tired' at the end of the day, when my body needs sleep. 

I also suspect that keeping my body consistent has to make a difference in the healing process. I'm no longer putting my body through the roller coaster of exacerbating and then subsiding symptoms.  Instead of wasting energy on that roller coaster ride, my body can just focus on healing.

And speaking of healing - my symptoms continue to dissipate.  I wake up feeling so well rested and energized that I told my girlfriend I almost feel like I could run a marathon (who am I kidding, I couldn't do that before MS - but you get the point).  I am in awe of my left foot - the toes that I couldn't move three weeks ago are wiggling like nobody's business. 

The sensation is back on the bottom of my foot - and interestingly, it's coming back the exact opposite of how it left.  When I first began to lose feeling on the bottom of my foot, it felt almost like walking on a grate - and then just went numb.  Well, the grate feeling is back.  So I'm guessing that the next step might be complete restoration of feeling - but hey, if that doesn't happen - having any sensation at all is still pretty amazing.

The MS Recovery Diet is changing my life.  It is giving me back my life.  I no longer accept that life with MS is one big downhill slide.  There may be no cure, but simply changing how I eat is proving to me that there is something I can do about this shitty disease called MS.

Someone once said "Today is the best day ever!"  And every day, it really is.

Joe