ruminations
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past times
Two days ago I went to my first yoga class in over four months. It was uplifting, challenging, frustrating … difficult! But when it was all done, and my legs had finished shaking, the core feeling I had was relief. I had been toying with the idea of returning to class for a few weeks but when I got right down to it, fear was holding me back. I’ve never been a star athlete -and that’s okay! – but I’ve also never had this little strength or control over my body. When yoga was difficult in the past I muscled through (just hold on through the breath ~ nothing lasts forever). That’s not an option anymore. I lost a lot of strength during the healing of my broken foot, and I lost a lot of feeling, control and balance during my last MS flare. Stepping back into the studio, I wasn’t sure where I would hit the most challenges. At the beginning, it was just sitting. My right ankle was so stiff I couldn’t comfortably sit. But as class progressed, the things I was worried about ended up being okay, and things I didn’t even think about -ahem, lunges – basically (and almost literally) brought me to my knees.
In the end, it was a relief to physically get through class without having to step out and it was mentally and emotionally a relief to get back to a part of my life that had ceased to exist for over a third of a year. Slowly but surely, the man and I have been finding a rhythm again ~ getting back to life and the basics. It feels sort of amazing.
Last night, we decided to do something that we have been wanting to do since our honeymoon. One of the masterclasses we attended in Aspen was with Andrew Zimmern, who did a whole demonstration on making noodles. It was fascinating to watch how easily he did it, and we happened to be sitting beside Carla Hall, who was given the finished dish to enjoy. She graciously shared it with those seated around her … and it was the.best.peanut.sauce.ever. Seriously. Incredible.
I have to say, one of my favorite things is cooking with my husband. Last night was a fun adventure, as neither of us had made a peanut sauce before, we knew we wanted it to taste like the dish we’d had in Aspen … and we had no idea how to achieve that.
The man found a basic recipe online (unfortunately, the recipe for the sauce that Mr. Zimmern made was not one of the included recipes in the Aspen Classic magazine). We picked up the missing pieces from the grocery store, and went about creating a dish.
The man decanted a nice bottle of vino ~ a staff pick from our local Wine & Spirits store. It was very bright, and enjoyable.
The man had an idea in his head of what he wanted the dish to be like. He cooked up some bacon and had me chop up some cilantro. We snuggled up with our wine, and two bowls of fettuccine topped with delicious sauce, bacon & cilantro. It was a good night.
#photofriday ~ home
I was feeling a little sentimental about our house today (which we .. erm, the man … cleaned because tomorrow we are throwing my little brother a little fete).
We have lived here for over four years. It is nearly the longest I have lived anywhere. It’s where John and I began as an us, it’s where we celebrated our marriage … our home means the world to me. Happy Friday.
Please note that Lucy has her own mansion within our home. And her toys belong … well, wherever she wants to leave them. 🙂
huh what
This morning I was appropriately on the ball (minus not making it to yoga again … but I’m warming it up … six a.m. is early). There is something seriously satisfying about having breakfast, taking all my meds (whew!), having a packed lunch and being dressed for work and out the door on time.
I just didn’t think about the traffic.
To the city, to the restaurant and then back out to the office was a full two and half hours. By the time I rolled into my office I was frazzled, frustrated and completely unmotivated.
Which made my boss’s appearance … twice!! … so amazingly unbelievable.
Today felt like a roller coaster ride … and I kept having to stop, take a breath and remind myself not to freak out. Ever have a moment (this could come completely from me being a total control freak) when you feel as though life has begun balancing out … and then you’re back in the deep end again, not sure which way is up?
That’s how today felt. Despite it’s auspicious beginnings.
By the end of the day only a quarter of my to-do list was done, I have less than 30 days to vacate my office and I was told quite bluntly that none of my decorating choices were welcome in our new space. Ouch. (Tact … maybe something my boss did not employ today at my expense).
But then I think about the day, and all the worries, and even though it sort of … well, sucked … I’d take a dozen days like today over another day when my legs just don’t work. So that really helps with perspective. And it makes me laugh. And that is good.
Having sushi helped, too. Perspective, right? 🙂
favorites
Today, after smoothies for breakfast and salads for lunch and all the good mumbo jumbo, the man and I cooked and enjoyed Quiche for dinner … for the first time in a looooong time. I could have made gluten-free crust (but I did not) and I like to think it’s good for me because of the abundance of spinach. Solid. 🙂
I will say that I should have checked the weather when I did my Sunday meal planning (we are trying to plan and grocery shop for the upcoming week … which is more challenging than I thought it would be). Had I checked to see that it was going to be stinky hot for October, I might not have chosen Quiche for tonight’s dinner (which necessitated the oven being at full force for over an hour). But I didn’t, and we made the Quiche … and it was glorious.
Glorious, I tell you. And I won’t take it back for anything.
On a completely unrelated tangent, six years ago today at about seven in the morning, I was driving home from the gym (I used to be uber-inspired, and work out with the dedicated folk of the six o’clock hour … God bless them) and the phone rang. It was my mother, and she let me know that my grandmother had passed away.
My grandmother ~ as I have mentioned in this blog before ~ was no ordinary woman. She was a corker, a force of nature … a stubborn anomaly of her generation. She was amazing. Hearing that news, as the sun blinded me in the passenger seat of the car, and traffic edged forward in a painful stop and go motion ~ was utterly devastating. It felt as though the air had stopped going to my lungs … I couldn’t breath, couldn’t speak. Something had ended that I would never get back.
Today, six years later, my mother had a follow-up with her doctor. She’d had a few tests run a week or so ago, and the whole family, whether we outwardly admitted it or not, were on pins and needles worrying about the results. I know that no one’s heart was in quite the vice grip that my mother’s was … I know this from the sound of her voice on the phone, but also from the tension that I held for weeks waiting for my own results to come back. It’s agonizing, torturous … a vast plain of speculation and fear.
And when my phone buzzed with a message from my father, a positive, upbeat “it’s good news” message, it felt as though the weight that had pinned the corners of life down had been released.
I can wax poetic about a lot of things … I’m good at it. Adjectives are my friends. But today, words couldn’t possibly capture the relief and joy I, along with my family, felt at the good news.
My brother (himself quite familiar with adjectives and powerful language) wrote a beautiful note that equated the karmic balance of today’s significance. Six years ago we lost a woman who shaped our lives and we will never fully heal from that. Today, we were given the gift of my mother’s life and health. And nothing can fully explain the power and intensity of that. To whomever we each individually believe in, I think I can say unequivocally that we are all grateful beyond measure.
quick MS recap
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.
living
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
moments
I love the fall. Even though sometimes life just feels really hard, and for me, now is one of those times, I still love the fall.
The recent two-day heat wave has been a bummer ~ but my weather app tells me confidently that this weekend is going to be lovely (aka, in my perfect place, the 60s), the man and I are headed to Happy Valley to root on my alma mater and I am currently enjoying my newest love ~ Zen Tazo Green Tea, from the Keurig.
My brain has been at full capacity lately ~ full of life, and philosophy, and work (of course). I guess often times, you don’t think about things until you’re up against it ~ like the benefit of good health benefits. I went for years in my twenties without coverage. I was only added to my husband’s plan earlier this year ~ and then, of course, it became an unexpected blessing to have quality coverage as we’ve navigated the rough waters of MS diagnosis and (endless) testing and (lifelong) medication.
Sometimes it’s hard to see those blessings when everything else feels so hard. I keep thinking of the saying “you can’t see the forest for the trees” but I think it’s more like “you can’t see individual trees for the forest”.
This week, for instance, I discovered the green tea K-cups (which seems like a small thing, but when you have a Starbucks addiction as I do, but choose not to spend $5/day on a hot beverage, this is an amazing discovery. In fact, I have been searching for something I truly loved for the Keurig for months … and this week, poof!, there it was. Beautiful!). I also happened upon Melody Gardot on Pandora, and until I began listening to her music, I didn’t realize how much I loved that jazzy, throw back sound ~ like sitting in a Parisian nightclub wearing a ’20s flapper dress and sipping a gin fizz. And I began listening, and I felt at ease, remembering moments from my youth and my mother’s Ella Fitzgerald sings the Cole Porter Songbook album. The music evokes an air of innocence ~ curled up & reading gentle books like Coming Home by Rosamunde Pilcher (quite probably my favorite book of all time), or wandering through misty green fields wearing Wellington boots.
Life can be ugly and messy and mean and … well, gray. Gray as in ~ no right or wrong, just the slushy mess in-between. Maybe I like being naive, maybe I like clinging to the dream of simplicity. I’m not sure.
I think this time of year breeds nostalgia ~ the memories of back to school, and big snuggly sweaters and hot chocolate. Flashbacks to a time when life didn’t feel nearly as hard as it does right now (well, for me at least!) Back when you had to ask your parents to borrow the car, get home by curfew ~ when the biggest angst was being asked to Homecoming.
I don’t know if I’d want to go back to a time before I knew my husband. I wasn’t lucky enough to meet him in high school … or college. I think we both had some learning and growing to do before we could fit together. But no matter how nostalgic I am sometimes for the simplicity of being the child instead of the adult, I guess that’s the beauty of life. Could we all have so joyously embraced life if we knew then what we know now? Maybe… maybe not.
I love the fall. I love the changing colors and the cooling temperatures. I love the smell of the leaves and the routine of football weekends. I love the ramp up to the holidays, and the anticipation. The man says we can better appreciate and love each season because none last ~ they cycle through and there are ups and downs of all the seasons (it is back-to-school after all, I guess).
One of my favorite mental images about the fall comes from You’ve Got Mail. I can’t remember the line precisely ~ it occurs in voiceover, as the audience is introduced to the two main characters’ email relationship. The line includes the phrase “a bouquet of freshly sharpened pencils” which to me, was so visceral and real. What an incredible image.
Anyway, that’s a little ramble from me. When I can’t get the doctor’s office to call me back, or get my boss to make a decision about insurance coverage or find a dog-sitter the man is happy with ~ when all those things are happening at the same moment, I am so glad it’s fall. And I have a Green Tea K-cup, and Melody Gardot is singing to me.
Xo.
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.
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.
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?…). 🙂
D5 Creation