thoughts from Ikea

Okay, so here are the facts.  I absolutely broke my foot this summer, and it absolutely took longer to heal than anticipated.  It opened my eyes to what it’s like to be physically challenged going through life on a day-to-day basis.

But my foot isn’t the only challenge I’ve faced, and that has been even more eye-opening.

This past Saturday, the man and I explored Ikea on a mission to find a piece of furniture for my side of the bed.  For anyone who hasn’t wandered the paths of Ikea, it’s a pretty vast place and the walk is long.  Along with limping a little due to my bum foot, I have also been dealing with stiffness and weakness in my legs, courtesy of MS.  As I struggled to stay on my feet and walking at a normal pace, I got frustrated with all the people around me for being totally oblivious of me ~ cutting me off or walking in front of me ~ or my favorite, not moving out of the way, thus forcing me to change my course.  I got mad ~ wanting to spit the words “This isn’t hard for you like it is more me!” at every person who bumped me, or caused me to lose my balance.

And then, as I sat on a day bed resting my legs for a minute and regaining better sight (exertion, heat and stress cause my optic neuritis to flare up, which as you can imagine, is always fun), it occurred to me that physically, I look exactly the same way I did a year ago, before all this bad sh*t started to happen.

There is no way for anyone who looks at me, sitting or standing, to know that anything is wrong with me.  And if a person -at this point- sees me shuffling along and favoring my left foot, they might assume I sprained my ankle.  Not that I’m struggling with my legs.

And I wondered how many times in my life I might have caused difficulty for someone else, struggling like me, who showed no outward physical symptoms that anything was wrong.

It sort of bummed me out.  And it’s been on my mind for days.

Do I want sympathy?  No.  Do I want people to treat me with kid gloves because they are concerned I am not as capable as another, fully healthy person? No.  But with that comes taking the lumps of walking around Ikea and being treated like everyone else … when physically, I’m not.  When physically, whether I look like it or not, I’m struggling to walk as normally as possible.

In January I came out of the gate strong ~ stay positive, live life normally.  Be normal.  That has gotten increasingly challenging as symptoms have taken over my body and I’ve been handicapped by a broken foot.  Through my mother, we visited an MS specialist at the beginning of August.  He felt my medicine wasn’t working, so as of last week, I’m on a new course of treatment.  We are hoping the new meds and the new doctor help to get things under control, but it’s definitely been an uphill climb.

This summer has been hard and things might be hard in the future.  But I hope I always have moments like that moment at Ikea.  Reminding me that from the outside, I’m still me, and I look the same as I’ve always looked.  And in truth, I am still me. And that’s how I hope I stay.

photo friday ~ diner en blanc

We were much less stressed out this year ~ we already had our table, and our chairs.  However, I was hobbling around with my right leg in a walking cast, so we got to our departure spot pretty early.

This year the pop-up picnic doubled in size, and Philadelphia shut down the whole stretch of JFK Blvd between 22nd and 30th Street station.  No water fountain, but still pretty impressive!

We were smarter this year and brought easy, finger food from the restaurant.  Meat, cheese and veggies (we both avoided the bread even though it’s so.utterly.delicious.  Grr, gluten!)

They had a pretty slick Rolls Royce as a big party decoration near the dance floor.

 

 

 

 

 

 

The moon was out.  Humid though it was, the weather was alright.  It was a good night.  Here’s ’til next year.

mornings

Let me first say, I’m so bummed that I dropped the ball on Friday for Photo Friday… again.  I had some really good ones to share!  Hopefully I’ll have some good ones this Friday, as Thursday night is our second Diner En Blanc Philadelphia.  (!!!)

I’m not traditionally a morning person … which is odd, because I have also become not a night person (I don’t know when 9.30pm became lights out for me … and yet, it is).  But when the man and I get up during the week (at the reasonable -?- hour of six), and the day is fresh and new and sort of quiet … it’s so beautiful.  And I love taking Lucy outside, and feeling the dew on my toes, and sipping something hot.  Mornings feel clean, welcoming – bright.

I love climbing into the car, ready for the day, mind full of ‘to-dos’ and still calm.  I love my office before everyone else arrives and the lights are still out in the lobby.  Whether I meant to or not … I’ve become a morning person.

Mornings have also become one of my most challenging times.  The further into MS I wade, as I work to manage flares and figure out the magical combination of diet and medicine that works for me, mornings prove to be the time when I feel most … well, MS-y.  My muscles are stiff and walking can be challenging.  My balance is iffy.  It’s really humbling.  I want -every day- to wake up and not think about MS.  Live a normal life.  Be normal.  It hasn’t been very easy recently.  But my foot and ankle are finally healing, and we’ve gone to see new MS specialists so all I can do is keep my fingers crossed that we’re on the right path.

my heart belongs to pittsburgh

This past weekend, the man and I ~ after visiting a new MS doctor and setting up rounds of new tests ~ journeyed across the great state of Pennsylvania to Pittsburgh to visit friends and attend the first pre-season NFL game of the year for both the Pittsburgh Steelers and the NY Football Giants.  My cousin was kind enough to give us the tickets as a wedding present, and it gave us a great excuse to journey west.

Spending time in and around Pittsburgh gave me ample opportunity to contemplate the idea of home.  This isn’t a new subject for me ~ in many ways, it’s been a quest of mine; to define it, identify it ~ figure out what home means to me.  I guess that’s not hard to understand since I have lead a somewhat nomadic life to this point.

It felt different being in Pittsburgh this time.  It felt familiar and yet new ~ comfortable.  I wondered if the feelings I felt were because of nostalgia or because for so long, I clung to Pittsburgh as my north star in a stormy sea.  But I think it felt as comfortable as it did because even if I have spent more time elsewhere, have been living outside Philadelphia for over nine years and have established a life for myself somewhere else, Pittsburgh fits me.

Pittsburgh feels like home ~ even a strange foreign home ~ because it IS home.

I might never live there ever again, visit sporadically and drift even further from the kind of person who calls Pittsburgh home.  But it is my history, it is the backbone of my identity.  Being there, sitting next to the fountain at Point State Park, that was abundantly clear to me.  Whether I become ingrained in the fabric of Philadelphia, or another part of our country, Pittsburgh with always be my north star.  It will always be where my dad grew up, sled down steep hills, hopped the fence at the old ball park and became the man he is.  It will always be where I said good-bye to my grandmother for the last time, and drank champagne and celebrated life ~ because that’s what she believed.  It will be where I learned to drive, and found and pursued my passion for art, theatre and music.  It will be the backdrop of so many landmarks in my memory and life.

My heart swells with pride for the way the city has re-invented itself and still maintains it’s unique and incredible identity.  I lost that for a little bit … I felt adrift and as though I wasn’t sure anymore of my foundation.  After Friday, and the turmoil and onslaught of so much new information, it felt beyond reassuring to remember who I am because I remembered where I am from.

the beatles

When I was younger, I would play my parents vinyl Beatles albums and lie beneath the record player, speakers blaring into my ears.  I loved the soft sound of Paul’s soothing voice, the magical way George played the guitar, John’s whimsy and brilliance and Ringo’s … well, Ringo.  You could tell that Ringo didn’t take himself too seriously, and he was probably always smiling.

Today, which hasn’t been my best day, I found myself humming Beatles’ songs, and I found it comforting, amidst the confusion of my mind.  Since I don’t have anything truly constructive to share except I’m having a bad MS day, I thought I’d share my ‘rainy day’ mantra.

I’m sure I’m not the only one.

“When I find myself in times of trouble, Mother Mary comes to me, speaking words of wisdom… Let It Be.”  

And I hope she does.

planning

Today, I finally got around to filling in my new monthly planner.

I had one ~ don’t be mistaken! ~ but I was frustrated with the multi-colored pages and my inability to use white-out when I made a mistake or our schedules changed.  So I got a small planner with white pages that runs from last month all.the.way through Dec 2014.  I felt very satisfied when I found it, as though befallen with a great stroke of luck.

I love being organized (and I love my multi-pack of colored pens!) but the planner used to only really be used for work meetings and football.  Now, it’s become a lot more.  Organizing the man and my crazy weekends, tracking the progress of my broken foot, keeping all my (absurd) amounts of doctor appointments straight.  Figuring out weddings, and parties and dinner dates and music festivals … Oy vey, I’m getting a little tired just thinking about it!

It’s a lot!

For joint trips, I use black pen, for stuff for me I use green (I am not sure there was ever a time that green wasn’t my favorite color) and for the man dark blue.  That works out, because Giants games are also in dark blue.  Steelers games are black and I use light blue for PSU (marriage is about compromise, right?).  I usually put birthdays in purple, important dates in pink (aka, don’t forget to send your lease renewal in!) and that leaves me with red, which I use for bills.  Urgh!

For some reason, I find writing everything relaxing rather than tedious, and its a huge tool for crazy work and personal scheduling weeks.  It also, on a lighter note, helps to predict when we can comfortably watch football at home, and when we need to journey to a sports bar (ahem, the Eagles schedule has a lot to do with which games are televised and which ones are blacked out).

Writing it out on paper gives me comfort in a way that I never get from online calendars (although I know they are very useful).  Things feel in line, settled and easy to remember and it is very satisfactory to look at a full month with all things filled in, and have a sense of what is to come.

I know there are things I can’t control (oh boy, do I know!) but I think in some weird, just-beneath-the-surface way, my calendar sets my mind at peace that I have controlled all that I can to the best of my ability.  It’s not that I don’t enjoy a good surprise every once in a while… but good surprises haven’t been very abundant of late! And while I love the philosophy of taking each day and each moment as it comes, I don’t really function like that, and I end up a pile of stressed out knots.  Best to just let me enjoy my calendar (… or seven?…).  🙂

in the thick of the struggle

So here I am, all geared up for Monday.  Finally walking without crutches, at work early, getting through all the sludge as the week unfolds before me.  Buuuuut …. on an awesome note, the man and I did real meal planning for the first time ever.  As in, sitting down and planning what we are going to eat for lunch and for dinner this whole week.

It was a little crazy.  But boy oh boy did it make grocery shopping easier! I only bought one random thing and safely stored it in the freezer for emergencies (I’d never seen an Italian Herb marinated pork tenderloin in our meat section before… had to try!)

The man is stoked because it means we have something to eat every day at work (without panicking at 7.30a as we rush to get out of the house or just being hungry all.day.) plus it means no after-work grocery store trips (which really eat up an evening … and that is a travesty when the weather is as gorgeous as it is supposed to be all week!).

We’ve reevaluated how we’ve been feeling (especially me as I work to manage stress and the frustration of a never-ending broken foot) and decided to re-dedicate ourselves to eliminating gluten from our diet.  We’ve also cut way back on red meat (well, meat of any kind) because according to the Swank diet, red meat and an abundance of saturated fat is bad.

I find the whole process to be both educational and frustrating.  When you get a diagnosis like MS, it’s a big piece of information to get your brain around.  Last year, in June, I was running regularly with Lucy, I could see just fine out of both eyes, and I could feel every part of my body.  In just a year, I have numbness in over 70% of my body (legs, torso, fingers) and any kind of heat, exertion, or high level of stress causes my optic neuritis to flare up.  I proactively began a course of treatment, learning how to give myself an intramuscular shot once a week.  I basically have doctor appointments every week.  My whole world changed.

I’ve been lucky in having some great resources in my boss’s wife, whose nutritional knowledge is incredible.  The man and I now have an entire counter dedicated to juicing and smoothies (our Breville Juicer, our Vita-Mix and our Nutri-Bullet).  We have found a great juice combination to switch up with our morning smoothies, & we eat more fruit and vegetables than either one of us ever ate in our lives (and, to be fair, have found that vegetarian options are usually delicious and packed with flavor).  We have embraced the versatility of quinoa, which is our go-to for any dish that we used to like containing couscous, pasta or rice (**sidenote: you can eat rice if you are on a gluten-free regime, but I don’t particularly like it).

There are a ton of resources on MS, but just like the disease itself, the treatments affect everyone differently.  Some people have controlled and basically eliminated symptoms with diet alone.  Some people have found that their course of interferon-beta treatments do the trick.

So far, not much feels like it’s working for me.  And so we just have to keep trying, keep modifying, keep changing our lives and giving up food and activity and clothing (well, specifically shoes!) because my body keeps betraying me.  It’s been five months since I started taking medicine, eight months since my official diagnosis and 13 months since my first symptom.  It’s challenging and discouraging that things seem to constantly be getting harder, worse & more pronounced, instead of going the other way.

I struggle to find comfort in the knowledge that I am tough, that I can handle it no matter how hard it gets.  I try to tell myself that there is a bigger plan, a way I can use this journey of mine to help others … because I find it hard to reconcile myself to the idea that there is nothing else … it just happened to me and it sucks.

Last night, after making our green juice and fruit salad for our lunches, we curled up on our outdoor sofa.  Miss Lucy hopped up and snuggled in, and we talked softly as the light disappeared from the sky and the stars twinkled faintly.  We talked about those things you fear in the darkest places of your heart, the ones you pretend aren’t there until the whispers become to loud to ignore.

I’d like to believe I am strong enough all the time to handle what has been given to me.  I’d like to be gracious and humble and work to maintain a normal existence, where we don’t talk about MS and numb fingers and dark vision.  But now that I’m here, with distance and experience and some knowledge of what MS means, it feels a lot scarier and a lot bigger than it did sitting in the doctor’s office in the cold of January.

My husband said to me, just recently, that he’s surprised sometimes at how together I am, considering all that I’ve been through.  I think that was one of the greatest compliments but also one of the most honest assessments I’ve ever been given of who I am.  I look at the women in my family, whose strength in the face of adversity takes your breath away, and I don’t feel strong like they are… like they were.

I sit here, my head full of recipes and ideas and commitments I need to make … full of fears and potential consequences and mistakes I’ve made. I feel a little lost and a little deflated, but I also know that I don’t have any choices ~ I have to keep going, and keep trying and keep hoping that something is going to make a difference.

So on that note… til tomorrow.  xo

lazy Saturday

“This afternoon, after running errands, but before succumbing to the rhythms of our normal life, the man set us up on our new back patio with a delicious Sauvignon Blanc (recommended by our friends/landlords) from Southbank (Marlborough, NZ) and a chess board.”

When I wrote this post on Saturday night, my eye lids were heavy, and when I re-read it on Sunday, I was a little appalled at how over the top positive I was.  It felt forced, strained almost.  And not because I meant to be forced, and not because I wasn’t trying to find the positive. I think it came across that way because I was tired when I wrote it, and wanted to avoid falling into any sort of melancholy.

Here’s what I meant to write:

We played chess on a beautiful afternoon while our crazy puppy idled around the yard without her leash (this is a miracle as she loves to sprint into the weeds and bushes the minute you let your guard down).  It was peaceful and gentle.  And as I stared at the rooks and bishops and knights (or, as I like to refer to them, horses) I thought how symbolic the game of chess really is.

My thoughts were jumbled on Saturday night.  The beautiful, crisp New Zealand Sauvignon Blanc could well have been partially responsible for that.  But I did have things I wanted to say … and not what came across in my first post.

Life is like chess … in that before every move you make, you analyze the consequences and try to figure out what will come back at you once you remove your fingers from the playing piece.  I think this feeling gets stronger as you get older, as you begin to see that every action has a reaction, has consequences (across the range … not just good, not just bad).  If I eat this delicious baked concoction of lightly puffed pastry and sugary cheese filling, I will have a moment of taste bud euphoria … and then for the next twenty-four hours I will have stomach pains and feel generally uncomfortable.  Was that cheese Danish worth it?  Was sacrificing my pawn smart when now I’ve left my queen vulnerable?

It didn’t help me that I played the beginning of the game thinking I had to protect my queen at all costs, rather than my king (feminism rearing its ugly head? hahaha …).  Once I learned that I could not sacrifice my king to protect my knight (because, well, then I lose, but also because at least in chess, you cannot put yourself in check) the game took on a whole different feel.  Sort of like finally understanding a tough math problem that had plagued you for weeks.

The man said I have a brain for chess (despite having played only four times in my entire life). I’d like to take that as a compliment, and walk around thinking I’m a crazy genius like Bobby Fisher.  But in reality, I have a feel for the game of chess because once I’m in, I over think every move.  I analyze each move I could make, each counter move my opponent could make, how each move would hurt/help me, how I could defend the next move of my opponent .. I over think chess the way I over think life.

It hasn’t helped my chess game.  The man has beaten me every time.  On Saturday he did give me the gift of a stalemate, which I thought was very kind of him.  It eased my wildly competitive spirit (you know, the one that hates to lose).

I think over thinking has served me well to a point … but mostly it has been my Achilles heel.  It makes me think of those test prep courses (SATs, LSATs, etc)  when they tell you to go with your gut instinct on the multiple choice question you just aren’t sure about.  I hate those questions … just like I hate those kinds of situations in life.  I like black and white, I like the right answer being obvious and easy to identify.  I drive myself crazy over the gray areas.

I guess this all comes full circle to my current (and permanent) new life baggage.  I can analyze the potential results of any choice that I make about MS.  I can hypothesize that food will help, I can hope that medicine will help.  I can guess that I’ll feel better when I figure out the right choices to make.  But just like chess, you sort of can’t predict how the game will progress until you make a commitment to a move.  And that can be scary in real life.  Because you just might lose.

first photo friday

I wanted to choose a day to share a picture or two instead of lots of words.  Here’s my debut Photo Friday.

My baby girl Miss Lucy Lou

 

 

 

 

 

 

 

 

Can’t do a photo day without one of Miss Lucy.

Aspen

 

 

 

 

 

 

 

Beautiful outdoor seating in Aspen for the Food & Wine Classic.

Miss Lucy & Mr Jack enjoying treats

 

 

 

 

 

 

 

 

The only moment (well, one of very few) when they weren’t playing together like crazy pups.

My school, my pride

 

 

 

 

 

 

 

It’s been a long and winding road these past few years.  But I will never not be full of Penn State pride.

Til tomorrow. xo

fresh starts & green juice

I always feel like the first of the month is a bigger version of a Monday ~ a marker at which to start fresh.  I like moments like that ~ a free pass to begin again with best intentions and solid plans in place.

The man and I have re-dedicated ourselves to clean eating and educating ourselves about diet, nutrition and exercise having spent June getting married and enjoying a culinary honeymoon and then struggling to figure out a balance when we returned home and I had a broken foot.  You really have no idea how much it changes things to not be able to walk … or the level of teamwork you can achieve because of it.

We have been lucky enough to get some awesome appliances to assist us in our quest for tasty but healthy food.  One of my great friends got us a Breville juicer(!!) for our wedding, and my life coach friend got us a Vita-Mix (!!).

After a few false starts, we have figured out juicing and it makes for a nice switch up with our Nutri-bullet smoothies.  (Actually, the man figured it out because I can’t really move around).

Our basic green juice includes:

1 bag baby spinach

1 head iceberg lettuce

5 large carrots

1 large cucumber

3 granny smith apples

1 large chunk of fresh ginger, peeled

Lemon Juice

1 scoop Green Vibrance

Instructions: Juice away! **We strain our juice through a colander but that’s just because I really hate any kind of bits in my beverages!**

Every day is going to be a challenge in some way ~ I’m working through that.  But together, my wonderful husband and I are figuring out how to make the best choices for my health, for his health and for our life.  I guess that’s the best we can do.

Til tomorrow.  xo.