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getting out of the rut
It’s easy to get in a rut. You find something you like, you’re tired, and instead of thinking outside the box, all of a sudden you’re eating catfish and mashed cauliflower with crispy kale every day.
It happens to the best of us.
I say this a lot, so it’s getting a little redundant even to me, but these past months – let’s say 18 ~ have been brutally tough. I definitely have a much more clear understanding of ‘getting the medicine right’ now. But there were moments when it felt a little like there was no light at the end of a very long, very dark tunnel.
You definitely get to the know the darkest parts of yourself in a struggle like that ~ find places that your mind goes at the toughest moments. But just as the trees are blooming around us and spring has finally come after quite a winter, so has my mind found its way back to the light. I have begun to come back to myself.
Anyway, enough of that. Like I said, it’s getting redundant even to me.
The point being that I used to find time for things I loved ~ reading, writing, cooking, this space. And then … I didn’t. So while I’ve made efforts over the past few months to get back here, they have been mostly abortive.
And then the man and I had a serious “Coming to Jesus” moment. And we realized that we’d fallen woefully off our healthy eating bandwagon and we needed to get back on – stat.
So out came the cookbooks that had been collecting (a lot) of dust. And just paging through them re-awakened something in us ~ a desire to try new ingredients and combinations of flavors. I’ve graduated somewhat from needing to follow a recipe exactly but the inspiration of food photography and mouth-watering recipe titles …. so.exciting.
We also began gardening a little bit this spring for the first time. And we planted a herb garden so we (theoretically) will have fresh ingredients to add to our meals. It’s very exciting. I really hope that this is the beginning of a new chapter ~ because the last one was getting really old. And super lame.
tiny miracles
It’s been a tough year.
Well, possibly more than a year at this point.
It’s been a struggle. For a million and one reasons, but a challenge. Everything I tried to do took triple the effort that I remembered it taking in the past. And it all wiped me out ~ like, lights out at 8pm on a Saturday wiped out. My head felt foggy most of the time ~ like all the sharpness that I’d once possessed looked like the nub of a well-used pencil. Things I’d always taken care of seemed unimportant ~ as though laundry, or vacuuming no longer mattered.
There didn’t seem to be solutions, answers ~ any sort of path.
And then ~ we tried the fourth medicine. And I no longer felt like I was having mini-strokes, I didn’t have huge welts and bruises all over my arms and legs, and depression didn’t seem to be overwhelming my life anymore (all previous, debilitating side effects).
And then, after weeks of yoga ‘therapy’ I was suddenly able to do dancer’s pose again ~ my teacher had found a way to modify practice so i felt like I actually was practicing. And I can stay up until 10pm on a weeknight and still get up at 6am for work. And even though my legs are still numb and sometimes I can’t hold my right hand steady (among other things) I can take Lucy out at night without fear of falling down, and get out of bed without falling into the wall, and work a full day and remember everything the way I used to.
It’s as though the fog is lifting, and I’m capable of doing things again, and capable of maintaining my life while still doing my job. I might not ever run a half marathon, or be able to climb a rock wall (possibly something that used to be on my bucket list after Camp Henry in sixth grade) … but I know I can function. And I can still practice yoga. And I can still cook, and write and read and swim (again, among other things!).
I feel as though I’m surfacing again after a long time drowning. There were a lot of band aids over the course of this journey, but nothing felt like the light at the end of the tunnel until now.
It’s nice to feel a little like myself again. It’s like the ultimate sigh of relief.
reading
As I was driving home today, the roads thick with traffic, my mind started to wander. I’d begun my audio book of “Harry Potter and the Deathly Hallows” for the second time (I haven’t found anything new on audible recently, which is a huge bummer) and I began to think about the magic of reading.
When I was younger, I was a total book-worm. There was something so incredible about getting lost in a good book ~ a world somewhere else, that totally took you away. I’ve had moments in adulthood when I’ve been completely overtaken by a book. I’m not ashamed to admit that I loved the ‘Hunger Games’ trilogy and the ‘Divergent’ trilogy. I also was completely enamoured with Elizabeth Gilbert’s ‘The Signature of all Things.’ Stunningly beautiful.
We moved a lot when I was young, but I remember libraries. My mum always took us to libraries and I would get completely wrapped up in the young adult section, piling up the titles I wanted to take home, only to have to weed through and pick a select few (which I would read in a matter of days). Books were my salvation, but they were also my teacher. So many things could be learned by reading books, exploring faraway people and places. Igniting the imagination to infinite possibilities.
When life gets crazy, or stressful, I find such beautiful relief in my audio books. I miss that I don’t take the time to read ~ that I haven’t taken the time in so long because life seemed to get in the way. I’d like to get back to it, get back to myself. I read a brief newspaper article today about MS, and remembered when the numbness in my feet first started. Remembered thinking and wondering if I would ever feel them normally again. The answer, sadly to this point, is no. But so much has happened since that day and I’ve lost little bits of myself because of stress and work and the ebb and flow of life.
I’d like to get back to reading. I guess that’s my point.
story time
This past weekend, the man and I were up bright and early on Saturday morning because we had to be at the hospital for some tests by 7.30a. Meh. The sun was stretching its way across the sky as we drove in the murky early morning to the city.
As we navigated the streets very close to our destination, we found ourselves behind a car sitting at a green light, waiting to make a turn. The man gave a friendly tap on the horn just as I realized there was a red arrow. Whoops. The driver’s arms were waving and there was no way to communicate that we’d made a mistake.
Except that we followed them the entire way into the parking garage of the hospital, and we ended up in the same waiting room with them, half asleep and filling in forms for testing. The man felt it necessary to apologize, which he did to her strong retort of “It was a red arrow!” Ce la vie, right? We’d done what we thought was best. Now on with life!
Over an hour later, as I shuffled back into the “Ladies Gowning Room” (sounds swanky right? haha), the same girl greeted me. She did a little bit of a double take, and then, making the decision, turned to me.
“I wanted to apologize ~ my husband was giving me a hard time for being such a bitch. Your husband came over to apologize and I should have been more gracious ~ so, thank you and I’m sorry! You guys must not be from Philly ~ I said that to my husband after you walked away ~ no one from Philly would have apologized!”
I smiled and laughed a little, admitting that neither of us were originally from Philadelphia but we lived here now. I assumed she wasn’t from Philly, as her car had New York plates, but she said she lived right around the corner. So it was an interesting remark. She was very nice and we chatted a bit after I put on normal clothing again (nothing seems to diminish a person more than the sexy gowns and socks required for hospital testing). It was a nice way to end the whole exchange. Human beings never cease to surprise. And being nice pays off every once in a while.
where I am
Often, in the evenings when I’m curled up on the couch, i want to write something here, but I don’t. There’s no good reason other than laziness ~ the man built me a desk to work from home, so my computer is now (gasp!) across the room. And when I’m very snuggled and comfy the inclination to get up … doesn’t really exist.
As I have written before, the man and I made no elaborate New Year’s resolutions, or had any expectations for this newest year. Which, in retrospect, may have been a blessing. At least the dismal nature of these first few months of 2014 aren’t additionally disappointing in regards to any expectations.
When your back is up against the wall, when legitimately everything feels difficult… I think that’s when your true character comes through. I can’t say much for mine (first, because that would be weird, but also because I don’t think a person can speak to their own character, only others can). My husband has been nothing but a positive force throughout our woes, full of the upside, of ideas, of encouragement … full of the bright side of life. It wasn’t easy for him either, and I selfishly wallowed in my own stuff rather than being a good partner.
But I feel as though we’ve definitely been in a valley for a while, and it’s infinitely comforting to know that I have a partner in this journey who loves, understands and supports me no.matter.what. That even when life feels like a real battle, he’s in my corner, he will fall asleep holding my hand and kiss me good morning every day when our alarm begins to ring. He’s a man who supports me at work, in my creative endeavors and through my newest medical challenge. Even if things are brutal, I am more than lucky to have as my person.
That sentiment extends to my crazy family, fantastic friends and lovably quirky co-workers. Even on the toughest days ~ when our health inspection for the new restaurant is postponed again or I have new, highly inconvenient symptoms ~ I am blessed to have a core group of seriously awesome people in my life.
People who ask why I haven’t blogged since February 23rd ~ who remind me that writing is my outlet, my therapy … my honesty in black & white. So this is my step back … I can’t guarantee the next few posts will be good. But I can guarantee they will exist.
realizations
When I was first diagnosed with MS, I didn’t take it very seriously. I mean, I intellectually understood I had a serious disease, one that is currently incurable and affects my nervous system. But I spent some quality time in denial land ~ nothing felt very different at the beginning. I was still running (training for Broad Street and with the dream of doing a half marathon), doing intense yoga and handling the daily stress of my job (which is no joke).
A few days ago I was at my doctor’s office again, and as he sat looking troubled at the computer screen, my heart sank a little more. He smiled ruefully, shaking his head a little, and told my husband and I that I’m a troubling case ~ I haven’t followed a typical path of diagnosis and treatment. Nothing seems to work.
Not super uplifting, right? Imagine for a moment, being 34 years old and in the time span of a year, have deteriorated in health so much that walking is difficult (never gonna do that half marathon…), fatigue is debilitating to the point of affecting life on a daily basis, and my right hand just stops working sometimes. Super fun, right? Or more specifically, scary.
I’m starting my fourth drug this month ~ and while I have to think positively, I am also waaaay over all of it. I’ve had welts and bruises all over my body, heart palpitations and mini-strokes (yay?) and a whole bunch of other delightful side effects ~ to no avail. I have still had four incredibly intense flares in a 13-month time span despite the meds. Neat.
I never wanted to become that person who talks about my disease all the time ~ I didn’t want it to interfere with my life at all. Today, I went grocery shopping with an IV line hanging from my pocket because I just didn’t want this latest course of steroids to interfere with my life one.minute.longer. On a positive side-note, the steroids seem to be the only thing that does work, so hurray for that. I said to the hubs a few weeks ago (when the flare began) that I had never wanted steroids more in my life. Which for me, is hilarious. I shy away from any drug of any kind being ingested in my body. I’m just not a fan. The first time I had IV steroids I cried and the man and I thought (very positively) that I wouldn’t need them again. Ever. Hahahahahaha. This was my fifth course.
I guess my only option is facing it all head-on ~ doing the research (ugh), following the trends in treatments and the studies occurring ~ looking at the disease holistically. Diet, exercise (or whatever I can do these days that might pass for exercise), sleep, stress relief, etc etc. It doesn’t seem very fun, or how I might necessarily choose to spend my time. But if it means something that resembles a quality of life again, I’m in.
I have to say that during this whole journey, I have been amazingly surprised by the people who stepped up and spoke to me about things I hadn’t even thought of. People whose support has been an awesome surprise. So, to be just a little obnoxious, I’d like to say thank you to the universe ~ y’know that crazy thing that holds our lives’ paths. For two years of my life I attended a very small, very good high school and the people I went to school with all seemed to have grown up together. But they embraced my brother and I and gave us a place we can still call home. So to all you Wyo folk ~ you really got me through this weekend. I am deeply appreciative and humbled by all your thoughts, messages and help. I cannot adequately express it. I feel blessed.
returning
This morning, I returned to the mat for the first time in months.
It felt amazing. And scary.
Things have changed so much in a year. I’ve had to learn a lot about living with the limitations that now exist for me. And the mental stuff that goes along with it.
I sometimes think that people think they understand what I deal with on a daily basis. And I appreciate the love and support. I do. But the truth is, no one, not even another person with MS, can totally understand my daily struggles. As I talked through some things with my yoga instructor (my favorite, of past blog posts) I laughed. A lot.
It sounds ridiculous to say some of the things I say when it comes to my symptoms. It’s just … well, funny. And what I also realized was that so many of these quirky things have become normal to me. It’s just how things are.
Which I guess is progress. Even though it doesn’t feel that way when things that used to come easily (oh, I don’t know, walking for example) are now a challenge. Something I’m acutely aware of throughout the day. Things that change how I make decisions. How many blocks is it, how many things do I have to carry … how much time do I have/need?
What was wonderful about today’s return to yoga was feeling as though I was making a decision to nurture myself a little. Work has been brutal and looks to remain brutal for the foreseeable future. Which means I have to figure out a way to keep work from crippling me (literally ~ because stress is what makes me worse). Choosing yoga and taking a short day is a step (albeit tiny) in the right direction.
Baby steps, right?
snow day
Today, as the flakes thickened in their race to the ground, I made my escape from the office at 11am. It wasn’t a terrible drive home ~ the roads weren’t super crowded but they also weren’t very good. Zoinks.
My amazing husband was already at home, and had shoveled the driveway three times!!! So all the crazy driving and abandoned vehicles and fender benders melted away as we made a nice comforting lunch of scrabby eggs and smoked salmon. I admit that as the snow fell fast and furious this girl worked (and got a lot done, btw!). But we also re-watched Silver Linings Playbook and enjoyed a nice bottle of red (after I OD’d on tea).
Our friends (and landlords) invited us over for dinner and as usual, they put forth an incredible spread. We chatted about life, and restaurants and film and food and wine as the snow continued to fall. It was a gentle almost other-worldly magical. Sometimes life happens like that.
I love snow. Not for the standard reasons ~ work, and having a day off and all that. Those things don’t really exist in the restaurant biz. I love the quiet and the beauty ~ the excuse it gives us to all be at home and enjoy each other, and be snuggled and warm.
Today was good day. Til tomorrow.
updates
Whew. It’s been awhile since I’ve been here. In the time I’ve been away I have been to the doctor, done a whole course of antibiotics, gotten an official raise (with a start date!), cleaned out all my kitchen drawers (the man did the cupboards) and made a delicious gluten-free macaroni and cheese (based on my mum’s recipe which can be found “In the Kitchen”) using quinoa pasta, gluten-free flour and oatmeal for the breadcrumb crust. Delish.
I was re-visiting some of my recent posts, and thought it might be fun to do a little progress report.
In regards to being unplugged, I’ve found a nice little balance, and while I have moments when I really miss having easy access on my phone, I’m mostly glad that I’m restricted to my iPad and having a wireless network. Makes me focus more on being in my life, rather than sharing a perspective of my life. The thing is, some people have a real grasp of social media, and share so intelligently … and some people just aren’t as artistic. I fall into the gray middle area (in my own opinion … I don’t think I’m always completely lame … But I’m certainly pedantic some of the time). Having such easy access meant that sometimes, instead of enjoying something, I was more worried about ‘sharing’ it. And that was the ultimate lame feeling for me, personally.
So that’s that.
Interestingly enough (on the subject of a recent blog about my twenties), an old co-worker was brought in for an interview with my company on Friday. It was actually a little disheartening in terms of how it all played out. I realized, in how this person reacted to me and treated me, that they had little to no respect for me as a person in the work force or even a human being. I felt as though the bad choices I’d made were staring me in the face and while it brought me relief to know I’d climbed out of that part of my life, at the same time it didn’t make me feel very proud. But as I chewed on it over the weekend, I came to some good conclusions ~ how I’d learned and grown and how this person didn’t seem to have progressed very much from the person I knew nearly eight years ago. And while there was and remains no need to make a judgement in regard to anyone else’s life or accomplishments, it did help me feel proud of the journey I’ve taken, and the things I’ve achieved. I could have stayed that person eight years ago ~ lost, insecure, unsure. But I didn’t. Despite having some big challenges. I became better than that. In re-reading my post from earlier this month, this little occurrence has only reinforced how far I’ve come.
Next up: work. Work will always be a roller-coaster. But my company celebrated the four-year anniversary of opening our doors on January 16th. It seems crazy to me that I’ve been on the ride since the beginning ~ not only on the ride, but a crucial element. As downright frustrating as it can be at times, I’m also enormously proud of what we’ve accomplished and become. And to be right on the cusp of opening our second location ~ very fulfilling (and completely exhausting!). As absolutely devastating as some days can be (and trust me, they are) ~ in the end it’s so incredible to be able to take such ownership of something that began as a small space on a corner and grew into a staple of the city’s casual dining scene. It’s just cool.
I had such a fun conversation with my Mama tonight, and it reinforced that she is the most wise person I know. I was hemming and hawing about yet another conundrum (I believe I make myself a magnet for them) and she laughed and said (and I’m paraphrasing) ~ Life is hard. For most people. And we just have to take the cards we are dealt and get on with it. It doesn’t help us any to over-share or wallow in our issues. It’s better to have just a little bit of the old British stiff upper lip. Of course if you find yourself in a place when you need to unburden, then you have those people in whom you can confide. But there’s no need to share every trauma. It doesn’t help anyone.
She’s right. I mean, I think it’s important to be in touch with and aware of your own personal struggles ~ but her words echoed a doctor who gave me some advice about my MS. He said his sister beat breast cancer five years earlier. And she had all the tee-shirts and water bottles and bags and did the events and fundraising. And he finally said to her ~ you’ve been cancer-free for five years. You are defining yourself by a disease you beat. And I support wearing the gear for an Awareness Walk, but not to define who you are. You had breast cancer, it didn’t have you. He smiled at me. “Sort of like you have MS, but it shouldn’t have you.”
Anyway, rambles.
Today wasn’t a bad day. It was a pretty okay day. Busy, and tiring. But not so bad. And I’m grateful for that. Til tomorrow.
recovery
It’s been awhile since I’ve been totally wiped out ~ as in, bed all day and in and out of sleep. But that was my day yesterday and for most of this morning. Even now, curled on the couch as the sun streams through the windows … yeah, I’m still not feeling great.
So lame.
Remember as a kid, when being sick meant a mother or grandmother softly tucking the blankets around you, whispering softly that they loved you, making soup or toast or tea? It changes as an adult. Luckily, I got sick on a weekend, so my husband tucked me in, whispered softly that he loved me and, when I was able to get up, made me pancakes for … well, the only meal I ate yesterday.
This morning the man headed out to run errands (he’s much more motivated than me) ~ I stayed at home, curled up with Lucy, half awake end half asleep watching an awesome Eagles (the band) documentary for the second time. He takes stupid good care of me and came home with lunch ingredients, juice ingredients and other fun (yes, I said fun) things from the grocery store.
I think I’m a little loopy at the moment.
Which probably means that a doctor’s appointment is necessary.
It really sucks to be sick as a grown up.
D5 Creation