Monday, August 5th, 2013

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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