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.
dawn
On June 1st, exactly five years after our very first date, John and I said “I do.” It was a pretty perfect day. This is one of my favorite shots, taken by my very talented Aunt, of our intimate ceremony. It also happened to be beautiful. But the best part was sharing it with my best friend. And he looked so handsome, too!
Then … time seemed to just zoom on by. We jetted to Colorado for a relaxing five-day stay at an incredible resort (Kessler Canyon) followed by the Aspen Food & Wine Classic. And then … well, I broke my foot.
It was a very long last day in Colorado. And July … it’s felt pretty long, too!
Denver was pretty neat ~ we were only there for a day, but we walked around the LoDo district (despite the heat wave from PA following us to CO and it being in the 90s every day!) and enjoyed dinner at a fantastic restaurant in an area called Larimer Square. I wish we could recreate the atmosphere of that area in Philly ~ the streets were lined with outdoor dining, beautiful flower arrangements, wrought iron fencing and the entire block was strung with lights. So gorgeous. In addition, we have both decided that while our entire honeymoon was a culinary delight, dinner at Tag was our favorite. Probably because our server was fantastic, the wine was delish and every plate that came out was beautiful and had amazing flavor. It was a perfect start to the honeymoon.
We also had an amazing stay at The Oxford Hotel ~ incredibly beautiful rooms, rugs in the elevator letting you know the day of the week (so charming!) and a complimentary bottle of champagne with chocolate covered pretzels. So wonderful!
Kessler Canyon was a four plus hour drive from Denver, and as we approached it, I think we were both curious as to what we would encounter when we arrived. But it was a little piece of heaven tucked in a valley between mountain ranges and the hospitality was overwhelming, as was everything else. Every morning began with coffee by an outdoor fireplace looking out over the ‘lake’ (John would like to say for the record that it was a pond, not a lake) and each day was full of fun things to do (shooting range, ATV rides up 2000 feet from the valley on switch back curves, hammocks, canoeing, hot tubs … basically whatever took your fancy!). We met some really great people and had a really relaxing time.
I took a ton of pictures on the drive from Denver to DeBeque. Hard to pic a good one. But the mountains were all stunning! A couple more from Kessler … although these are all from my phone (not the nifty new Nikon 3100 that we bought right before the trip … and still haven’t downloaded!).
The last day of our time at Kessler there ware so few guests, we all got to eat in the kitchen. So much fun!
The last pic was actually the last pic we took at Kessler being goofy on the back porch ~ we did see a bear the first day, though!
Another two hours in the car to Aspen, and thankfully, the temperature dropped significantly (whew!). We got to our digs in downtown Aspen, and after some confusion about our trade packets for the event, had all our goodies and were set for the fun to begin the next morning. We took full advantage of the in-ground hot tub right outside our front door, and the gorgeous pool. I wish I’d taken pictures …. maybe next year!
Since the Food & Wine Classic was ah.may.zing, I’m going to wait until tomorrow and really try to share as much as possible.
Until then … I have avoided this blog since I got home, not because I didn’t have things to share, but because I wasn’t in a very good frame of mind. I felt as though I’d lost my way here … and I couldn’t find it because I couldn’t (and still can’t) get around very easily. It has been exhausting and frustrating and a number of other descriptive words. I am lucky to have a man willing to take care of me on every level ~ and those boundaries have certainly been tested since June 15th (the breaking of the foot day). It has been easy to get discouraged, easy to feel listless and lost, easy to get mad, feel sad and basically pity myself. Coming off the difficult and challenging diagnosis of MS this year, breaking my foot just felt like the last nail in the coffin. Could it get any worse? I felt as though I’d lost my will to stay positive.
But as I have (valiantly/) tried to remind myself recently … it’s always darkest before the dawn. And time will keep on ticking, and eventually things will be easier, and I will be capable of doing more. It’s hard to remember that when your dog is ringing the bell to go outside to potty and you can’t take her … or you want to take a shower but you don’t have the strength to get in and out by yourself … or a cup of coffee would taste wonderful, but you have no way to transport it to an area where you can actually sit down and drink it. But having these difficulties has also made me more aware of the fact that we all – whether we mean to or not – take so many things for granted. And while I know a time will come when I too will once again take the ability to sleep on my right side for granted (something I have not been able to do in weeks … ) I know that for a few moments, I will be grateful for the little things that have come back to me.
Until tomorrow. xo.
perspective
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.
D5 Creation