fridays

I realized today, as I rode the elevator up from the parking garage, that I’ve been coming to UPenn for meds for two and a half years.  I’ve known my nurses for a long time.  They smile and wave as I sit in a bed, getting juiced up for the month.

Tysabri.  What a game changer.

It took me awhile to try it.  I spent 2014 in a downward spiral of frustrating physical handicaps – Lydia (my walking cane), numb limbs, the inability to climb stairs — and my favorite, when my right hand would just stop working out of nowhere.  I’d been on Avonex, Copaxone (my least favorite), Gilenya (oh lordy, the testing) and finally, Tecfidera.  Nothing worked.  My body was sliding into utter disintegration and chaos.  I burst into tears a lot, got huffy and wallowed in feelings of defeat and despair.  Dr. M prescribed Tysabri three times before I actually made an appointment.  Three times.  Three mailings full of shwag I would never use (bags, neck pillows, etc etc) and a welcome packet with smiling people who looked less like MS patients, and more like catalog models.

My first infusion (after sitting for hours in a room with John and Dr. M hashing it out) was on December 17th, 2014.  Hubs came with me because the entire experience was a little overwhelming.  My second infusion in January 2015 was three days after I was diagnosed with shingles (that’s right, shingles — I was thirty-five).  I didn’t really notice a difference, but John did.  Around April he casually mentioned that I could walk from our living room to the bathroom without reaching out to hold walls and countertops.  By July of 2015 I wasn’t even using Lydia that much.  I would forget her at home on work days.  We moved into our new house, with two flights of stairs, and I was okay.  I had to hold onto the railing and take my time.  But I was okay.  Slowly, it got easier.  I made the transition from taking one step at a time to one foot after the other.  It was a little like learning to walk all over again.

I wore heels again for the first time in March 2016.  I still can’t do stilettos, but a nice wedge or a thick boot heel?  Yes, please!  And then, this June, I got my first manual car for the first time since 2012.

I still have tough days.  I find the brain fog comes a lot more often, and a lot earlier than it used to.  But I ride my bike every day.  I eat as well as I can (which isn’t always great, but I do my best).  I come in for my medicine without fail.  All these lovely things help me live as close to a normal life as I can hope for.  I won’t give up wine (I know plenty of MS peeps who stopped drinking and I agree, it doesn’t help the brain fog at all, but man, it’s so tasty).  I still have cheese and gluten (albeit sparingly).  I try not to think about the terrible things my medicine has caused in other people.  Because for me, Tysabri gave me back my life.

In a small way, I have come to associate Fridays with medicine.  I know that Fridays are great for the working world — last day of the week before the weekend.  In my world, every fourth Friday is when I get to come into the hospital to fill up on whatever it is that makes my life better.  I’ll take it.

today’s goals

I definitely woke up  much less stiff and sore this morning.  But I also had to do a very modified work out yesterday (due to my sore knee).

Hubs and I are headed to his parents this weekend so John can help them do some projects (which involve climbing on the roof, so I’m guessing they are both serious and necessary).  I’ve struggled with travel since the whole MS thing, because I am a creature of habit, and those habits involve food (ahem, smoothies).  So yesterday, I set about finding a small, portable blender so I can have a smoothie in the morning while we are away from home.

Amazon really dropped the ball.  I originally ordered a blender that had a guaranteed delivery date of tomorrow, just to have the tracking information update this morning when I checked shipping.  Thanks Amazon, so glad I have a Prime Membership and infinitely more glad that it’s so efficient.  Smoke could be seen coming out of my ears and in a rage, I cancelled the order.  What good does a blender do me on Monday?  No good at all.  None.

So, today, my goals include hitting my Move goal (aka burning over 800 calories according to my watch), drinking at least four bottles of water in preparation for meds tomorrow (being hydrated means the nurses can find the veins and saves me additional angst because I really don’t love needles) and finding a portable blender at either Kohls (I’ve googled, it seems they have quite a selection) or BBB (I’d rather hit the jackpot at Kohls – it’s closer to home).  I’ve done my meal planning for the day – salad for lunch and veggie noodles with chicken sausage for dinner (I had sushi last night, because Hubs had to go meet a work associate at the last minute and take him to dinner).  We also have to pack up the truck for the weekend — tent for camping in the yard, air mattress, blankets etc etc.  I’m still trying to figure out what workouts I will do while in Mansfield.  But I’m sure I’ll come up with something.  Additionally, the paper has begun to accumulate on my desk, so I should probably sift through that before going away for a couple days.

Ah.  Life.  Always keeping you on your toes.  Wishing everyone a great day filled with lots of smart food choices, a healthy sweat and tons of hydration.  It’s a humid one in Southeastern PA, so I’m sure the MS will be buzzing!  (Literally.  It feels like buzzing in my fingers and hands).

a day in the life

I’ve had a rough few months.

Not in a bad way.  In a good way.  But the past few months have not been easy.  I’ve felt really lost a lot of the time.  I keep coming to this blog wondering what I’m doing.  What do I have to say?

What do I have to say.

I started this blog about six years ago, with the idea of learning to cook and sharing the amazing recipes I was sure I would be making.  And along the way, I got MS.  Which really changes the shape of a person’s life.  About a year and a half ago, I started to work out in earnest.  To be fair, I don’t know if I had a specific reason.  Just the idea that I knew I should be working out, and we’d spent some cash on a stationary bike.

Earlier this year, I though to myself, I should make this blog about MS.  But lemme tell you something — that is both challenging and slightly depressing.  MS is not fun.  It challenges a person every day in every way.  But it also makes you look at things from a completely different perspective.

Would I be biking nearly 170 miles a week if it weren’t for MS?  Maybe.  But probably not.

Would I have an addiction to green smoothies?  Um… I’m going to guess no.

Would I constantly be trying to push the boundaries of my dietary restrictions in the best possible way, and make things that normally sound dismal delicious?  Absolutely not.  I mean, I think we all start to get healthier as we age — recovery isn’t as quick, and we learn that taking care of this body we were given really does help lead a more fulfilling life.  But I think the extremities of the consequences I deal with really helped clarify my life.

I really don’t like absolutes, so when I try something new, I think of it in an 80/20 capacity.  I’ll be good 80% of the time, and take my chances 20% of the time.  Over the past few years, I’ve found this approach works best for me.  I think everyone responds to boundaries differently — some of us might like the all or nothing approach.  But all that all or nothing accomplishes for me is a truly terrible attitude and massive resentment and unhappiness.  That isn’t to say that over time I haven’t found certain things are better at 100% (green smoothies are an example — a day without a smoothie means feeling much more lethargic and foggy, having lower energy and waking up in gripping stiffness and pain the next day — all of which I’m sure, sound amazing).  But across the whole spectrum, 80/20 has become my go-to.

And as I struggle each day to make the best decisions I can (I succeed sometimes, but I also fail … a lot) I thought maybe it might be something I could share here.

I have meds on Friday, which means I’m tired this week.  And the heat and humidity of July are not my friends.  When I woke up this morning, after about ten hours of sleep, my entire torso ached every time I inhaled.  My legs were unbelievably stiff, and my left knee hurt.  I mean, hurt.  Which I find so depressing, because it means I won’t have a good ride on my bike, if I ride my bike at all.  And that, in turn, means that my “Move” circle on my watch might not get completed.  Highly unsatisfactory.

I knew John had a long conference today (we are still adjusting to him working from home – finding routines and rhythm). I tried to make my bullet point list for today — things I wanted to accomplish.  I was going over to a barn near my house that does therapeutic riding with disabled children with my mother, but otherwise, nothing on the agenda.  I’d done some grocery shopping yesterday, so I figured I’d make something yummy.

I did a slight variation of a black bean & citrus salad that I first made years ago (from Iowa Girl Eats).  Let me tell you something ~ making a recipe when you are infinitely more comfortable in the kitchen is so much more fun than freaking out about measurements and ingredients every five seconds.  This recipe *could* be healthier (I used Israeli cous cous cooked in chicken bouillon instead of quinoa and water) but it’s still a pretty good one.  It’s definitely a recipe that makes me feel both healthy and happy.

What I used:

1 1/2 cups pink grapefruit segments

1 can black beans (rinsed)

1/4 cup chopped cilantro

2 ears of fresh corn (cut off the cobb raw)

1/4 cup dried cranberries

1 cup dry Israeli Cous Cous

1 1/4 cup chicken bouillon

 

 

 

 

 

Dressing:

Juice of 2 limes

1/2 cup EVOO

2 tsp Cumin

Salt & Pepper to taste

 

 

 

 

 

Directions:

1.  Combine cous cous and bouillon in a medium saucepan.  Bring to a boil and then immediately reduce to a simmer.  Cover and allow cous cous to absorb liquid — about six- eight minutes.  Keep an eye on it and stir occasionally so the cous cous doesn’t stick to the bottom of the pan.  Once the pearls are inflated, transfer to a  bowl and let cool to room temp.

2. Combine grapefruit, beans, corn, cilantro and cranberries in a medium to large mixing bowl.  I fold together with a spatula so that the grapefruit doesn’t break down too much.

3.  In a separate bowl, squeeze lime juice and combine with EVOO, cumin and salt and pepper.  Whisk together.

4.  When cous cous has cooled, combine with other ingredients, pour vinaigrette over and continue to mix until well combined.

5.  It’s delicious.  Trust me.

 

 

 

 

 

 

 

I’m heading down to the gym now ~ I’ll probably do some burpees and squats (depending  on my knee) and then about 20 miles on the bike (again, knee dependent).  I’m hoping to get back to a regular yoga practice soon — my muscles are feeling tight from all the cardio and strength work outs.  Hubs and I have sweet potato noodles to make for dinner tonight (Wegmans = the best).

I’m already on my third bottle of water, so if I focus, I could probably get four in today (which may help with the soreness and stiffness).

 

conundrums

Having MS.

It’s sort of like everything all the time, and nothing at all.

I don’t really know how to better describe it.  How it affects everything, and is always on my mind, but at the same time isn’t that important at all.

When I talk about my MS, I usually feel like it’s a throwaway comment ~ not that big a deal, just the norm.  But then, halfway through the words coming out of my mouth, I realize (usually from the changing facial expression of the person I’m talking to) that perhaps, my comments are a little more jarring to them.

I guess it’s like …. nope.  I can’t think of anything that it might be like.  It’s just … my baseline, my reality.  I don’t want sympathy.  I don’t want pity.  But I also don’t know how to exist without it anymore.  It’s such a huge part of my whole life.  It influences everything I do, everything I wear, every decision I make.  I am no longer myself without the MS.  I am MS, it’s become part of my framework.

I don’t bring it up on purpose … and what I mean by that is, it’s so much a part of every aspect of my life, I don’t know how to exist without acknowledging it.  Yes.  Maybe that’s it.

I guess my throwaway bio on Instagram and Twitter are the truest of true … I am an MS warrior — BUT, I’m so much more than that.  Sometimes maybe, it’s hard to remember that there’s so much more, when I lead with such a wham bang punch.

phantom bruises

So, for those of you not blessed with MS, let me tell you that the amount of bruises I find on my body are both intriguing and puzzling.  I don’t know if everyone with MS bruises easily, but what I’ve found is that a stiff breeze can color my legs purple and it takes weeks for them to fade.

The problem with this issue is that in the summer, my legs aren’t safely ensconced in pant legs, and therefore, the challenge becomes how to minimize the purple and blue.

A few years ago I got really serious about taking care of the skin on my legs.  It sounds (to me) a little over-the-top, but I was tired of having ugly, discolored skin all the time.  I researched exfoliators (I currently use Shiseido Body Illuminator, which I like a lot), tried out a bunch of moisturizers (I like Vaseline’s Cocoa Butter but my favorite is Johnson’s Baby Oil with Shea Butter) and got much more serious about using shaving cream.  I order from Harry’s, because you can get eight blades and two cans of shaving cream for $28.  Pretty decent compared to what the hubs spends for his razor blades.

But the product that changed the game was discovering Tarte’s Maracuja Rainforest Glow ~ a sort of tanner/body perfecter.  I guess it’s kind of like a tanner/foundation for the legs (or anywhere?, but I only use it on my legs).  It definitely hides the bruises, and it doesn’t take eight hours to kick in.  Sadly, Tarte discontinued it, so I desperately ordered the last three bottles I could find on eBay to buy me some time to find something similar to it.  Fingers crossed!

Hubs and I are heading to two Fourth Parties ~ one today and one tomorrow, so hopefully I can cover up the huge bruises on my calves (from what?, you ask ~ yeah, I have no idea.  I think the one on my right leg was from brushing into the car door too hard while unloading groceries … but the other ones?  Complete mysteries).

Anyway, Happy Fourth of July everyone!  May your parties be fun, festive and patriotic!

brian o’connor

During my last year of college I lived in a row of three houses filled with theatre majors.  It was a fun block and group of people.  I’m not in touch with many of them today (other than Facebook, but we’re the generation who grew up without Facebook, so a lot of us function without it … which means not a lot of online living).  But through the years, oddly enough, I have stayed in touch with  my next door neighbor and friend Matthew.  And to some extent, through Matthew, his brother Brennen.  Matthew is a successful actor in New York City and Brennen is a successful architect back in Pittsburgh (where they are from).

But when I think of Matthew and Brennen, the first thing I think about is Brennen’s Laser (dark blue, and always sitting in the common driveway, the hood popped up and Brennen’s upper torso leaning over the engine -for a purpose none of us were ever too interested in).

It’s hard, in a few words, to describe that year I lived on North Atherton surrounded by those boys, but I have memories for days.  Brennen and the Laser, playing video games (the only time in my life, and only for a few months before Brennen took our Playstation away, pointing out that we’d completely stopped doing anything else).  Writing music, listening to music, sitting and talking for hours at a time.  It was a magical year.

It was also the year that I was first exposed to “The Fast & the Furious.”  And, for reasons I still cannot pinpoint, I fell in love with it.

When John and I started dating, we watched the fourth movie on a bootleg internet site – the coming back of Vin Diesel and Brian O’Connor after the (in my opinion) blasphemy of ‘Tokyo Drift.’  We saw ‘Fast Five’ in the theatre on opening weekend.  And the sixth.

And then, like a shock wave, Paul Walker died.

I cannot explain why it affected me the way it did.  I was absolutely devastated.  I watched all my DVDs for days, watched  Brian O’Connor wearing his chucks and vans.  Smiled with tears in my eyes when he spoke.  Tweeted too many times with the hashtag “Remember the Buster.”   I wore chucks for a week leading up to the release of F&F 7, and was there for a matinée showing on its opening day.  I don’t think I paid very much attention to the movie ~ I was transfixed with watching Paul Walker on-screen.  And I still cry every time I see the end sequence of that movie.  Big, hot, emotional tears.

So when “The Fate of the Furious” was released, I felt a little torn about seeing it.  Hubs was hoping that with the departure of Brian O’Connor (Paul Walker’s character in the movies), I would move on from my “Fast and Furious” obsession.  We didn’t see it in the theatre.  I listened to, but stayed quiet, about all the reviews.  Was I ready to see a new F&F movie without Brian O’Connor?  I didn’t know.

But I pre-ordered it on iTunes because deep down, I couldn’t turn my back on this series of movies that have grown more and more absurd as their popularity has grown. I love them too much.   I still think about Paul Walker asking for his tuna sandwich, no crust and am magnetically drawn to the films.  So John and I sat down to watch it this week.

To me, there was a gaping hole where Brian O’Connor should have been.  But, I also considered that life goes on for all of us when we lose someone we love.  Life continues, and the hole is there and the memories are there and the emptiness drums in the background, the heartbeat of the person we’ve lost.

It was better than I thought it would be.  It felt like there was a story again – something that I’d felt was missing from the sixth and seventh installments.  My breath caught in my throat when Roman (Tyrese Gibson) and Letty (Michelle Rodriguez) mentioned Brian in the middle of the movie.  And I cried at the end, knowing but waiting for confirmation of what I’d guessed.

I don’t know why I love the movies.  Life, maybe?  Good memories?  And I certainly can’t explain why I was so ripped apart by an actor’s death — a person I didn’t even know.  And yet, I was.  I remain staunchly loyal to Brian O’Connor.  The Buster.  Tuna, no Crust.

And I’ll keep watching the Fast & Furious movies until they stop being made.  Because I can’t give up now.

every morning

This morning John and I slept in.  What that really means is that he gets up with Lucy at 6a so she can have her breakfast and a little walk around the neighborhood to do her duty, and then he comes back to bed.  So really, it’s a win for me.  I always mean to get up but the beginnings and the ends of days are tough for me.  It’s tough for me to get going, and it’s tough for me to stay awake at night.

I thought, since I’m trying to get back to this space a little more, that I’d begin July with a post about how I begin most of my days (barring meds, or MRIs like yesterday, when we get up at 5a and head into the city).

Every morning, I get up and put on my watch.  That begins the tracking of my movement for the day.  Also, the earlier you start your stand hours, the sooner you hit 12.  I check my Nalgene by the bedside – how full it is, etc.  I have four Nalgenes, three of which are in constant rotation at the house for my water tracking.  One is purple, one pink and the last green.  Each is 32 ounces, so based on the idea that a person should drink half their body weight in water ounces, I need to have about 80 ounces of water a day.  And more, because I exercise.  So I make a mental note of which color bottle I’m starting with, and how many ounces are in it.  I try to have three full bottles a day, plus any extra waters at restaurants, or our other water bottles that fit into the Jeep (and actually keep water cold). Having the different colors helps me remember (if it’s a tough brain day) how much I’ve had.  I can track by color.

Once I’m vertical, and have allowed my body to have its morning spasm (always enjoyable), I get dressed to work out.  My goal is always to ride the bike early, so that the rest of the day is free, but I will confess that that doesn’t happen all the time.  I get distracted doing laundry, or cleaning the floors, or reading a magazine.  But I now have a whole section of work out clothing in my closet (thank you Fabletics) so I’m usually go to go with clean clothing.

I’m a skincare junkie, so I try to splash my face with some cold water and then do a quick wipe with toner.  Then I slap on some lightweight moisturizer with SPF so that when Lucy and I walk around the neighborhood I don’t get sunburned.  I also psychotically brush my teeth and use a tongue scraper (sidenote, if you have never used one or don’t even know what it is, let me tell you that it is the best thing for making your mouth feel clean and keeping your breath fresh.  I am obsessed with mine).  I will confess that the time I spend in the bathroom at the beginning of the day and the end of the day is not a small amount.  But … I like taking care of my skin and my teeth.

Next up I take four drops of liquid Vitamin D and B12.  I do 8000 IUs of Vitamin D a day and 1000 of B12.  Probably a little higher than the average Joe, but I have multiple sclerosis, so it works for me.  I also always  make my bed and clean up any clothing I might not have put away the night before.  Sometimes I’m so blindingly tired when I go to bed I don’t even remember, so despite my OCD tendencies, it isn’t uncommon that my clothes are folded and left out on the bench under my window.  Somehow, despite fatigue, I still manage to fold my clothing before bed.  Just not put it away.

I also put some foot cream on my right foot, because the nerve endings in that foot are shot, and so I have a build up of dead skin and calluses (super sexy, I know) and my podiatrist prescribes me an ointment that eats away at that stuff.  It’s pretty rad.

The best part of my morning is my green smoothie, which I almost always have first thing, before Lucy’s walk, my bike ride, or anything else.  I’ve been doing green smoothies for a couple years now, and our basic recipe is pretty delish, but sometimes we switch it up if we have extra fruit (recently we had mango and it was so.yum) or something we want to try.   We used to use the NutriBullet, but that burnt out after a couple years so now we use our Vitamix.  If you don’t have a Vitamix, consider getting one, because it is glorious.  I absolutely love it.  I put baby spinach, orange juice, milk, ice cubes, organic peanut butter, a banana, Field of Greens supplement, Matcha, ginger, turmeric and a little cayenne pepper into our smoothie. I used to use coconut oil, but I like the flavor of a nut butter better.  You could make it healthier by using nut milk and nut butter, but John and I have tried (to this point unsuccessfully) to make the switch away from cow’s milk and intermittently used different combos of almond butter, cashew butter and others, but because it’s such a routine thing, I buy the easiest stuff to get when I’m trying to get in and out of Wegmans as fast as possible.  (That store is NEVER not crowded.  Seriously.)

With our smoothies I dole out our vitamins, a Men’s Multi for John, Women’s Multi for me, and a Vitamin C boost.  Sometimes we take Airborne (depending on the season and how we are feeling).  After that, it’s a walk around the neighborhood with Lucy, which I consider my warm-up, and then some burpees, squats, ab stuff and a bike ride.  My goal was 100 miles a week, but I’ve upped it recently to 150 (I was consistently hitting about 135 a week, and figured I needed to increase the challenge).

Anyway, that’s my morning.  That’s my little recipe for trying to feel the best I can regardless of how my body and my disease are feeling.  I read in one of my health magazines an interesting piece about hitting a workout plateau.  And I think I’ve begun to mentally apply it to MS.  A lot of times people hit a plateau because they don’t believe they can keep going/push harder/lift heavier/last longer.  But mostly, it isn’t about what our muscles are capable of, but what our mind has decided.  So sometimes, when I am near tears and feeling utterly beaten and frustrated, I think about that.  And I try to focus on succeeding and overcoming.  And once I believe I can, it makes it a lot easier to accomplish.  So, even when my bones ache, and everything feels heavy and clunky, I make myself get up, strap on my watch, and begin my day putting goodness in my body.

Happy July all! xo

memphis

Last weekend I logged onto my admin page for this blog, and I couldn’t for the life of me get the ‘new post’ page to load.  I was frustrated.  I had something to say.

So I typed it in a word document, determined to post it the next day.

But time has a way of slipping through even the most diligent of fingers, and my fingers, in regards to this blog, have not been very diligent of late.

I’ve re-read what I wrote a few times.  But for some reason, am no longer compelled to share it in its original form.  What I will share is the general idea of what the post was about.  And -hopefully -make it better.

My new car.

John and I purchased a brand new, all-white, fiftieth anniversary Chevy Camaro last Friday.  It’s a 335-horsepower V6 manual.  It sits luxuriously in our driveway, exuding power and sexiness.  I often look out the front window and down at her low profile roof, all slanted windows and curves.  I wonder who the lucky driver of this magnificent beast is, and giggle knowing it’s me.  It’s sort of hilarious.

But the car is more than that.

It’s a return, for me, to driving a manual car for the first time since being diagnosed with MS.  When I test drove it, my palms were sweaty, I was convinced I couldn’t do it — would stall out, grind the gears, ride the clutch until the acrid smell of burning filled the air.  But it wasn’t like that at all.

Driving stick is a little bit like riding a bike.  Once you know how, you know how.  And it comes back magically, as though all those years of driving automatic never existed.  As though you’ve always known the feel of the road through your gears.

Maybe I drove it too fast.  Took a corner badly (ps. can she handle or what?!?).  But it was intoxicating.  Even the nervousness of the visibility and the rumbling power under the hood could not dampen the pure exhilaration.

The past few months have been a roller coaster of life changes.  Leaving my job.  John’s surgery.  His new job.  Our changing routine and idea of normal.  Sometimes I’ve felt a little lost, looking for a purpose, a direction, something resembling motivation.

It’s funny that driving a stick shift again has been so seminal.  As though I’ve come back to myself.  As though the battle I fight every day, with the green smoothies and the bike riding and the water drinking and the vitamin taking and the …. blah blah blah … has come to mean something tangible.  I’ve taken little pieces of myself back since this disease took over.  Slowly, painfully, almost imperceptibly.

Fact.  I have MS.

Another fact.  It sucks.

Little victories ~ a new recipe that rocks, walking without a cane … once again driving manual …  they all matter.  They all count.  They are the things that keep me getting up, and blending spinach in a Vitamix, and sweating my face off in my garage on a stationary bike.

We named our new ride Memphis.  For our wedding song.  For our matching tattoos.  For the ancient capital of Egypt and for the city of Rock N Roll.

And she is beautiful.

the watch

My husband bought me an Apple Watch for my birthday back in December.  We had to order it, because they didn’t have the size/color I wanted, so I finally received it a few days before the new year.  Apple products have some of the best packaging, and I remember distinctly watching its delivery status online (I had to be home to sign for it) and when it arrived, carrying it like precious jewels or paper-thin crystal up the stairs to my kitchen to unwrap it at the island.  Every moment was breath-taking.  It was so beautiful.

I was so insanely in love with it within minutes that I promptly told my husband (who had a watch he very much-loved) that he needed to get an Apple Watch immediately.  And so, despite some grumbling, he did.

And we have both been addicted since this year began.  I have missed only two days of completing my circles (Move, Exercise and Stand) ~ the first was a sync problem when I got a new phone (February 25th) and the second was this past Sunday, when I was certain that my fatigue was going to overrun my life.  I am sad about both days (I am very competitive) but what is even more important is how much the watch has changed our lives.

Hubs, who was a college athlete but hated working out, has begun riding a stationary bike every day in our garage (we do this together since we have 2 bikes …. see my previous post my bike is a very, very, very nice bike).  Sometimes we trail ride (although this is challenging on a number of fronts because of my absurd fatigue – thank you MS – and our inability make decisions in a timely fashion to avoid the heat).  I have found – in the six months of having my watch – that I’ve made more progress than I made all last year while riding the bike, probably because now the watch motivates me.  I can walk away from my phone when Lucy and I go for walks, because calls and texts (and email!) all pop up on my watch.  Hurrah!  This past Sunday I tried to leave my watch on the charger all day … but JUST.COULDN’T.DO.IT.  So I settled for closing my Stand rings and trying not to feel too sad about my Exercise and Move (since I’d made the decision to give my body a rest).

It is one of my favorite things.

In the four and half years I’ve had MS, I’ve learned so many things about keeping my disease under control.  It isn’t just about medicine, and it isn’t just about food and exercise.  It’s about all of that, and having faith in the decisions you are making, and waking up every day ready to give it your all once again.  The mornings are tough for me — my body usually hurts, and if I’m lucky I wasn’t up several times in the night to use the bathroom.  But once I’m vertical, it’s about making the best choices I can.  This watch has helped me do that, day after day, when I’m tired, when I’m sad, when I just don’t feel like it.

As John gears up to begin his new job next week by having drinks and dinner with some new co-workers, I’m at home, trying to find my direction.  And as silly as it sounds, my direction has begun to begin with my Watch.  Get up.  Move around.  Get sweaty.  I’ve learned that those things are invaluable to feeling better, feeling focused and motivated.

So, this is just a little love note to my Apple Watch, and also to my husband, for getting it for me in the first place.  He always seems to have an uncanny ability to get me things that fill my life up with happiness and joy.

 

 

staying true

I think, as we get older, we all start to feel infinitely more comfortable in our own skin.  We find strength in our decisions, who we have chosen to be as people, our values, our morals, our likes and dislikes.  It’s comforting.

It doesn’t mean that people don’t exist who try to shake our foundation, make us question the choices we’ve made.  Those people exist.  Maybe they are just completely convinced that there is no room in the world for an opinion that differs from their own, maybe they are utterly committed to their ‘rightness.’  Who knows.  I have no problem saying that sometimes, other people’s choices don’t make any sense to me.  But they don’t have to — it isn’t my life.  I feel as though some people never get to that conclusion.

But what is so sweet, so justifying, is a moment in life when the things you’ve been quietly questioning are re-affirmed, and you know (once again) that you believed the things that were important to you, that you had faith in the things that rang true to your conscience.

Hubs and I spent last weekend in New York City.  We had tickets to see ‘Hamilton’ and no other plans than to just enjoy being in NYC together for a little bit.  We had drinks at Rockefeller Center, we had dinner with actor friends of mine from college.  We ate awesome sushi at a hole in the wall restaurant right near the theatre district.  We saw ‘Hamilton.’  It was magical.  And it reminded me of parts of myself that I’d forgotten.  It reminded me of the love I had for so long for theatre.  That I still have.  It reminded me that no matter how beaten down I’d gotten over the past seven years, what always pulled me through was the doggedness I had in regards to what I believed.  Was I insecure?  Oh yes.  Did I over think pretty much everything?  Absolutely.  But was I always true to myself?  Yes.  I might not be proud of many things about myself — I might get frustrated, and beat myself down sometimes.  But my family –my parents, my grandmother, my brother, my aunts and uncles — they helped me form a rock solid foundation of who I am.  And I am so grateful for that.  It certainly doesn’t mean I won’t worry about things in the future.  Wonder if I’m making the right choices.  But I know that I am true to myself, in the end.  That’s how I sleep at night.  That’s how I get through the tough times and the challenges.

I believe in honestly.  I believe in loving people and treating them with dignity and respect.  When I find that I have trouble doing those things, I try to figure out why.  I believe in finding the positive.  Finding the hope, finding the happiness.  Through disease, surgeries, crisis and woe.  As my favorite acting teacher said in one of my first college acting classes, Por Los Buenos.  For the good.  We are all motivated by what we believe is ‘the good.’   (Although I do think that some people are super pre-occupied with ‘who has it worse and let me tell you why/how’).

And one more thing. Time. Time is the great healer and revealer.  With time, the truth comes.  You just have to have faith, and believe.