On Friday, the man & I journeyed down to UPenn for my follow-up with our (my?) new MS specialist.  I have to say… anti-climatic.  I’m not sure if I have the time or patience to put together a really thought-provoking diatribe about my frustrations with the short-comings of our medical industry.  But please know that my non-sensical rants at the height of frustration and fatigue focus fairly specifically about just that.

Not knowing much more now than we knew before is disappointing.

Signing up for a myriad of tests … again … that’s just downright discouraging. I know it’s part of the process – part of what needs to be done.  But man oh  man.  I just want to get to the point where my calendar isn’t a lot of green ink and doctor’s appointments.

It’s also ironic that as I wade through all of the ins and outs of MS, the Obama-care debate is raging … in fact, the government might or might not shut down tomorrow.  Craziness.

Healthcare.  It’s a real bitch.  And then again, it’s the most important thing of all. It carries such a weight of importance.  It sot of blows my mind that for much of my twenties, I didn’t have insurance, and I didn’t even think about it.  What if my benefits significantly change now, and all of a sudden, MS cripples my husband and I financially?  It’s frightening.

Anyway.  Enough with the doldrums!

Lots of good things happened to redeem September, so I’m heading into October uplifted and enthusiastic.  It’s my favorite month, I’m feeling more mobile and more comfortable in my own skin again, and those things have to be the foundation of my outlook.

So, I have to admit something.  I have read through some of my past posts, and while I like what I had to say (haha, I did feel the need to say it, after all!) I feel as though I’ve walked quite a line in my narrative.

It makes sense, as I’ve also been walking quite a line in my mental attitude and preparedness for the changes that have been occurring in my life.

I wanted to really embrace and document what I’ve faced as perhaps something that someone else could relate to … but I don’t know that I was or am particularly prepared for all that.  When all my health issues began, I did the only thing I knew how to do ~ I ignored it.  My mother had gotten ill during the exact same week, and that seemed infinitely more important.  I don’t think I specifically neglected myself ~ I just prioritized myself beneath my mother.  I don’t regret that.  When staring down the barrel of two guns, I think I chose the easier to deal with.

That, and the intensity of my struggles seemed to pale in comparison to the journey my mother was travelling.  That balance has tipped a little in recent months ~ sort of forced me to face things I would rather have ignored.

I haven’t always handled things well ~ it’s a huge thing to wrap one’s brain around ~ the idea that I might never have full feeling or control in my legs again.  After breaking my foot on my honeymoon, I definitely felt frustrated and deflated.  I wanted to get back to the mat and start running again in preparation for a half marathon (ah, dreams!).  And just as my foot began to heal, my left leg just… well, sort of stopped working?  The man and I journeyed to NYC to visit my brother and I could barely climb two flights of stairs.  A week later, I nearly collapsed climbing to our seats at PSU … not once, but three times.  It was once of the most frustrating and humbling things I have ever endured.  I sat on the bench, staring out at the field, a field I have watched every year of my life, barely able to see anything, hot tears stinging my ineffective eyes.

It’s difficult as well, to read other people’s accounts of having MS and living seemingly normal lives.  I feel as though John and I have made so many valiant efforts to be as proactive as possible ~ juicing, and limiting dairy and gluten, and going to bed at 9pm (because I can’t get through a day without at least 10 hours of sleep).  And nothing feels as though it’s effective at all.  I have gone from a weekly injection to a daily injection, I did my fourth course of IV steroids (and by far my very worst experience).  I try to walk my dog around our yard, and live as normally as possible … and yet sometimes, I’m just irrationally angry.

John believes that we will find a balance ~ find a way to live a fulfilling life.  And most of the time I really trust him.  But I worry about the burden of this on his shoulders ~ the worry of maintaining health benefits and paying bills and attending doctor appointments (of which we have an abundance).  I worry about the strain of a disease like this on a relationship ~ no matter how strong we are together.  I worry about my own job, and how long I will be able to do it before my physical in abilities handicap me.  And I know that worry only makes things worse … only, how can I not worry about these things?

I come to this blog to remind myself of good things ~ making my lists of things to stay positive about, focusing on things to look forward to (which, sidenote, is NOT the Steelers season so far!).  I don’t want to dismiss my MS but I also don’t know that I want to be that person who is solely focused on it.  I don’t have much of a choice right now  … it’s taken over my body and all I can do is hope and wait that the steroids do their job.

I want to hold onto the choices I began to make at the beginning of this ~ committing to a healthy lifestyle and diet, spending quality time enjoying my friends, family and incredible husband (I get such a kick out of calling him that!).  Sometimes, I will lose my way, and I hope that when I get lost, I can come back here, and find my center again.

Til tomorrow.  xo

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.

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.

“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.

Life has been moving at warp speed.  When the man and I woke up on May 1st, turned to each other, and said (with smiles and giggles and kisses) that we were a month away from our big day … yeah, that moment feels like it happened yesterday.  And yet … we are less than 9 full days away now from June 1st.

Everything feels like it’s happening at heightened levels of emotion.  Work has been intense for both of us ~ I can’t speak for the man, but for me, after over three years of starts and stops, my company is officially opening a second location.  With that comes amazing excitement and motivation .. but also (awesome timing, right?) a LOT of work.  Sometimes, lately more often than is convenient, my brain feels like putty.

I have to say that my journey since the start of 2013 has been incredible.  Big ups, deep lows ~ a ton of uncertainty.  I’ve had to make adjustments and learn to live my life in a different way and at a different pace.  I began a post the other day in which I specifically stated that my body shuts down at 10pm.  If I’m sitting somewhere without access to a clock I can tell you within a minute if it’s 10pm.  My eyelids get heavy and all interest in anything other that sleep disappears.  It’s uncanny.

It’s funny to think that so much of 2013 has come and gone.  And here the man and I stand, on the metaphorical threshold of our shared life, looking out across our future.  It’s changed a lot since we met on a cold, rainy day in December of 2007.  And what’s incredible to me is how much has changed in the last five months.

I will be the first to admit that I have been … handicapped?… by insecurity for much of my adult life.  I will also admit I’ve made my share of mistakes, but additionally (unfortunately for me) people’s words of criticism are hard for me to forget.  I’ve carried those criticisms for many years, allowing them to chip away at me, hold me back at times, and kick my feet out from underneath me.  This year, I’ve gained a lot of confidence.  I always have my ‘self-motivation’ moments ~ when I scour the shelves at B & N and spend too much time sipping chai tea and reading advice that all basically sounds the same.  Something about this year has been different.

Last night I was confronted with a test.  I’ve spent the past few months trying to be more positive, to look at the bright side, to relax and not stress myself out.  And then ~ this person showed up, and for whatever reason, felt the need to say truly horrible things as though they were flippant.  As though it were acceptable to say these things aloud to others.  i was deeply upset, troubled ~ unsettled.  But I slept on it ~ because here’s the truth ~ I have immediate, strong and sometimes really inaccurate gut reactions.  I’m a drama queen ~ a person ruled by emotion.  Sometimes it’s best to take a step back and really look at a situation with as much perspective as you can get.

And today, with as much of that perspective as I could muster, I decided that I had been right.  Being friends with someone who is destructive to you isn’t a friendship ~ and maintaining it is irresponsible unless you are a glutton for punishment.  And here’s the thing I learned … or maybe I decided it.  I have to be okay with the people I spend time with.  And if those people try to drag me down, don’t respect me. and/or insult my family and kin purely for sport or to get a reaction ~ that’s not the kind of person I want in my life.

John said to me a little bit ago that since I chose to be positive, my whole demeanor had changed.  He said “Babe, you are actually happier since you decided to be.”  Such a huge compliment from someone who has to put up with me all the time (and in less than 9 days legally!… and forever!). I think part of that is also choosing the company I want to keep ~ happy people promote happiness.  Petty, angry, bitter people promote bitterness.  Actually, when I put it like that, it’s pretty simple.

So that’s my moment of today.  I’ve had a lot of those over the last few weeks and have started and stopped a bunch of posts.  It’s made me think about this blog, and what I’m looking to get out of it. So I’ve made a decision.  When i get back from my honeymoon (!!!) I want to refocus on cooking ~ and moving forward, the blog, cooking and various activities and adventures will have a common theme ~ learning about and living with MS.  Diet is a huge part of managing the disease, and I feel as though the man and I have just begun to scratch the surface of foods and meals that work for me/us.  I’m looking forward to the new journey.  If I don’t get back here before, I’d like to say right now that June 1st is most assuredly going to be the best day of my life.

Where to start ….

Here’s the thing.  I know what i want to say.  I just don’t quite know how to get there from nothing.   Ultimate challenge, eh?

So, truth.  After all the sympathy and the positive thoughts, at the bottom of it all lurks the cold, hard truth.  You don’t have MS.  You aren’t struggling.  My mother said this to me matter-of-factly, as she has been dealing with it as well in her own situation.  She may have even laughed dryly and then said with total clarity, “You know Mousie, everyone says they are so sorry ~ but their gut reaction is relief.  And wouldn’t yours be?”  A thoughtful pause.  “It would be. I would be relieved it wasn’t happening to me.”

Aye, there’s the rub.

Listen, she’s right.  In the past, when I’ve heard about other people’s trouble I’ve felt terrible, but also secretly glad that I got to go home and forget all about it.  And I know that as I struggle through all these changes no one is sitting at home worrying about me.  Life moves on, there are things to see, to do, to experience.  Heck, I have so much exciting stuff going on I don’t even want to have to deal with all the baggage.  Unfortunately, here I am.

It’s humbling, all the things I’m learning as I work through my very first *official* flare.  I’ve had good moments, a lot of bad ones, and I’ve been horribly tired (hence the silence on here).  I wonder how many others are out there, dealing like I am, figuring out how to navigate this stuff.  It’s not easy.  And any idea I had of just sort of brushing over MS is gone.  No one could ignore this stuff.  I mean, wrap your head around being 33 and barely able to see, walk straight or tie your shoes?  If it wasn’t real, it would be sort of hilarious.  It still kind of is.

So I thought today I would reflect on the things keeping me sane, keeping me smiling through this.

I met a man with MS who was so kind, smart, and utterly sympathetic on Sunday, and he has agreed to talk to me and help me in any way he can. It’s amazing how generous people are ~ especially when they truly understand and care.

MS has given me perspective on life ~ I just don’t have time for the crap anymore.  I want to be happy, to enjoy the good things, to laugh with my love, snuggle with my puppy, enjoy good books and movies and time with family and beautiful vistas and trips ….  It’s amazing what life has to offer you when you are willing to look past the daily humdrum stuff.

I am obsessed with audible.com.  I love getting in the car and disappearing inside a good book ~no stressful vision required.  I’m completely addicted and cannot rave enough about how amazing the written word is ~ I remember my mum reading aloud to Dave and I as we grew up, and she gave us such a precious gift.  I am forever grateful.

People are incredibly generous.  Seriously.  We were just given amazing news from our landlords ~ they are building us an outdoor patio area and mostly, we just asked.  So often we defeat ourselves before even giving things a try.  I love being surprised in the best possible way.  I can’t wait to enjoy being outside with Lucy and the man and enjoying our gorgeous garden from our friends/landlords.

I am overwhelmed by my boss and his huge heart.  Work isn’t always easy, and it can be stressful and crazy.  But it’s exciting and fun and ever-changing, and my boss has been flexible as I’ve faced my obstacles and been nothing but supportive.  He will probably never read this, but I couldn’t ask for a better leader, owner and friend.  He has been incredible through all this, and I am eternally grateful.

And finally, to the man.  I would be lost without you ~ with you, I am not alone, or scared, or overwhelmed.  You make life all that it is.  I cannot wait to promise forever to you, and I am so glad that you will be there to walk by my side and be my best friend, confidante and love for the rest of my life & into eternity.  Thank you for getting me through this.  I promise it will get easier.

Everyone has ups and downs ~ that’s a universal truth.  And not one of us knows what it’s like to walk in someone else’s moccasins.  My path has been tough recently, but I am clinging to the faith that things will get easier, I will get better and as I do so, I will learn more about how to deal with my moccasins.

Today, they’re pretty okay.  I’m hoping that means I’m in the home stretch to feeling better.