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a new life
I’ve had this little seed of a thought in my mind for the past few days … and I’ve been working to figure out the essence of it, because while I understood what I wanted to share, I wasn’t sure how to do it.
I”m not sure I know now, either, but I figured I was ready to try.
Yesterday on Live with Kelly & Michael they honored one of their “Unstoppable Mom” finalists. I had to stop and watch because the woman is from the town in which my parents now live. Just watching her daily life made me feel both tired and super lazy. By the end, I had goosebumps and tears in my eyes. People are amazing, everywhere, and so often their incredible-ness is known only to those in their immediate circle. I was inspired by the life that woman leads, and it made my accomplishments and obstacles feel small in comparison.
And then I took a step back, and told myself to stop being such a downer. Yes, her life is inspiring, and I am so glad I was able to witness it, albeit briefly, but I decided I wasn’t going to allow myself to diminish the journey I’ve been on these past few months. (Although I know for a fact that if I woke up daily at 4.30a and went to bed at midnight I would be a very cranky person ~ sleep is my friend, and in a lot of ways, my savior). Everyone walks in their own moccasins, and everyone’s path is both challenging and rewarding on epic levels for each individual. That’s the truth. Comparisons are silly and not constructive or helpful in any way.
I’d always been that person who wanted to be healthy, active and a contributor to society. But even though I admired those people focused on recycling and the environment, clean eating and soulful exercise, etc, I never seemed to find the motivation within myself to sustain that type of lifestyle. Last July, when I sat down with my nutritionist/friend to discuss health options for people with MS, I felt myself tense up and dig in my heels in utter resistance. I had a million excuses … and I felt they were all very stong, very valid points.
And yet, here I sit with my green smoothie, my yoga bag tucked in the corner of my office ready for class tonight, and the man and I have converted our kitchen from a den of delicious comfort food to a veritable vegetable patch and whole foods haven. And even weirder ~ I crave veggies. I don’t feel okay unless I’ve loaded up with all kinds during pretty much every meal, every day. I like them blended, stuffed, grilled, dunked in hummus, chopped … you name it. And listen, I never even imagined it would be possible, let alone a reality. It’s amazing what a person can accomplish with a little motivation.
We started small, because I was pretty averse to all the changes that my nutritionist said were necessary. And I will admit that while we’ve cut back on our dairy intake, I probably won’t ever give it up completely. No matter what evil pieces of information come my way to encourage it. As I type this, I’m salivating thinking of the stuffed pepper I have in the fridge for lunch. The man did dinner last night, because I was at the office until nearly seven (gasp!) and it was soooo good. Even better, he made enough for lunch today, which was smart, because having anything else with that memory on my taste buds would have been disappointing.
So all these thoughts have been floating in my mind and I also realized that we are nearly halfway through March (a month that, historically, is not my friend) and I’m not feeling like I normally do ~ lethargic, sad, disinterested in life … overwhelmingly apathetic. And it has made me consider one of my favorite quotes (which hung on my mother’s beside wall in most of our homes through the years) ~
Change your thoughts and you will change your world.
I haven’t just changed my thoughts ~ but in this new year, I have focused very hard on staying strong and upbeat and positive about all that life has thrown my way. It doesn’t help anyone to cry woefully about one’s lot in life ~ it’s better to get up, dust oneself off, and get on with things (which as I type sounds so British in my head). I’m not sure if it’s the new diet, the cleaner living, the dedication to exercise, the lack of alcohol (a known depressant) or my concerted effort to stay positive, but I do definitely feel different. I have spent large chunks of my life battling what I’ve always referred to as ‘the darkness’ and right now, it feels very far away. Even though things are tough, and unknown and scary things seem to be around every corner, and one of the largest side effects of my new medicine is depression. So in a way, I’m walking proof of the power of the mind.
In so many ways, big and small, 2013 has been the start of a new life for the man and I. Yes, we will be making it legal in June (!!), but it’s so much more than that. I think back to four and half years ago and am amazed at how far we’ve come together ~ the accomplishments, the lessons learned, the chances taken. I think I’m a pretty tough chick, but he is my partner in every sense of the word, and when I’ve been weak, he’s been strong. I couldn’t and wouldn’t be where I am without his support and teamwork. I feel so incredibly blessed for all that I have in terms of family and friendship. I think that has helped buoy me through all this craziness as well. I won’t allow myself to be beaten. (I’m a little bit competitive … and that may or may not be an understatement!).
So now that I’ve waxed lyrical for a while, I’ll close out with this ~ it’s a much more beautiful world when you’re smiling all the time. Even if you’re faking it, eventually you might even fool yourself.
strong women
Yesterday I was at my doctor’s office for a small procedure, and instead of seeing the person I normally see, I saw the head doctor, who also happens to be one of my mother’s old and dear friends. (Which would also explain why I have been driving to Wyomissing to see her and her staff since I was sixteen, no matter where I was living ~ clearly still the case, as I drive from Philadelphia now and have not once considered changing doctors).
Whenever I end up seeing my mother’s friends I am almost instantly transported back to our first kitchen in Reading, with white blue and pink flowered wallpaper and all the women from her club ~ the Berks Women’s Network ~ gathered around the table coallating the pink pages of their newsletters. At the time, I am one hundred percent certain that I had no idea the significance of this to me, and how it would help shape my ideals, my morals, my world view.
I have to take a step back, and say that my mother is the strongest, smartest, most resilient, incredible, charming, capable woman I have ever met. Or, I truly believe, ever will meet. She has faced down lions and demons in her life, and she always manages to emerge on the other side completely unphased, totally together, classy and composed. I’m sure she has had dark times ~ she’s human, and no one could have emerged from the hells she’s walked through unchanged. But she does it with such style, such self-possession. I am absolutely certain that if I am ever half the woman my mother is, that will be quite an accomplishment.
We moved a lot as I grew up and I am sure that took a toll on my mum ~ always having to uproot, change jobs, meet new friends. When I was about five, we moved to Reading for th first time, Jennie J moved in with us, and my mother went back to work. She’d done stay-at-home-motherhood and it just wasn’t her thing. Luckily (in some ways) my grandmother was able to move in with us. In a lot of ways, she was our (Dave & my) second mother.
I was young when all this happened, so my memories are hazy, but I remember going shopping with my mum for new work clothes ~ I remember some of the women from the Berks Women’s Network ~ I remember when my mother was given the opportunity to head up the at-the-time revolutionary Women’s Center at the Reading Hospital and Medical Center. I remember her office, too, and the waiting room with its dark plexiglass playhouse and the educational rooms with fake breasts to help women feel what breast cancer tumors would be like. I remember my mother’s boss, Jeannette, who was in so many ways a hero to me, and, I believe, a hero to my mother. Jeannette gave my mother that opportunity at the Women’s Center, and since then, my mum has never looked back. She has had a very successful career in spite of the relocations and all the obstacles associated with them.
The women from those days stayed in my mother’s life even as we moved to New Jersey, and then to Pittsburgh. And then, just after I turned sixteen, we headed back to Reading. Things had changed ~ obviously. Everything does with time. It was the nineties then, not the eighties, and women’s place in the workforce was evolving. Back in the early days (as I remember it) I was surrounded by strong professional women, but I really had no idea how hard they had worked to get there. Jeannette had been the President of the Reading Hospital — the first female president ever. And she’d made huge personal sacrifices to achieve her success. I didn’t understand that when I was five, and I could only partially grasp it when I was sixteen. But I fully appreciate it now.
I mention her because she died a few years ago, and when I found out, it felt as though my heart had been ripped from my body. I hadn’t realized it until she was no longer around to tell, but she had been my role model, a woman who believed in helping other women, in promoting the careers of women in a positive way and being a strong example of a professional woman. When she’d had her first and only child – a daughter- at the age of forty (I believe), she’d said with confidence that her baby girl would be the first female President of the United States. I still remember things about her with crystal clarity, and I wish I could have told her what she meant to me.
Jeannette was just one of the women I was exposed to at a young age ~a tender, impressionable age ~ and they all left their mark. A doctor, a business entrepreneur, a hospital President …. I never knew any other world than the world my mother showed me, with strong, smart, independent, savvy women. I know now that not all women are built like that ~ not all small girls are given the gift of those magnificent role models. As I chatted with my doctor yesterday, all my memories came rushing back, and I suddenly understood the significance of the kind of mother my mother chose to be, and how she chose to raise me. I believe it must be a huge and terrifying burden as the mother of a daughter to teach her the joys and drawbacks of life without cynicism, and give her the tools to succeed without utter pessimism. I applaud all the mothers out there doing their best to teach and shape and mold and support and then release their daughters. I can’t even imagine what a job it must be.
What I do know is that my mother will freely admit she probably wasn’t cut out to be a mother. She has no qualms admitting it was tough. She loves us ~ there is no doubting that. But she’s not afraid to be honest and admit her short-comings (even if I think she’s bananas because she did a great job). That, to me, makes her even more remarkable, because she does it without the undercurrent of self-pity or self-loathing. She is, was and continues to be incredible, amazing, inspiring. To me (and in the words of Mary Poppins) she is practically perfect in every way. She is my friend, my confidant, my sounding board, my gauge of reason … my mother. I can’t imagine being the person I am today without her and without the gifts she gave me as I grew up.
So thank you, Mama. If there were better, stronger words, I wish I knew them.
joy
For the first time in I-don’t-even-want-to-admit how long, I found myself on my mat tonight. I’d been meaning to get back into my Tuesday yoga ritual since January, but I hit a few road bumps. And yes, I realize that most road bumps are navigable, it all just depends on one’s determination ~ but I’m going to use the excuse anyway.
I’ve taken my fair share of yoga classes, and as I may have mentioned, I found a teacher at my old studio who just made sense to me. I rarely, if ever, missed her class. Unfortunately, the yoga studio closed at the beginning of December and for a while, my teacher didn’t have a regular class. But now, not only does she have one, but I’ve finally gotten my booty in order to attend.
It was blissful. I mean that ~ even though my body feels like jelly right now, and I had a sad moment of truth about ten minutes into class when I knew that I might not be completely out of shape, but I’m completely out of yoga shape.
Appropriately (and timely) enough, meditation was about joy. The opening quote was from August Strindberg (ah, flash backs to college Drama Lit classes, and “Miss Julie”) …
People are constantly clamoring for the joy of life. As for me, I find the joy of life in the hard and cruel battle of life – to learn something is a joy to me.
Let me tell you, there are many ways to find meaning in that quote. As class began, our teacher reminded us that often, we get bogged down in life, and we forget to find the joy. We instead focus on the endless repetitive parts of our day that wear on us. Instead, we should make an effort to find the joy. Find the joy in class, find the joy in folding socks, etc. At one point, another quote included the phrase “cause-less joy” which for me was the essence of what she was saying. Find the joy, feel the joy, for no reason other than joy.
As I struggled through class, I could think of a lot of things not to be joyful about. My shaking legs, my inability to do basic things that back in the fall felt like second nature, my frustration at my numb legs and feet …. The list could go on. And then I re-focused on what I could be joyful about. And there were just as many — if not more. I was joyful to be on the mat again, even if things were challenging. I was joyful to have the ability to still be active, even after losing feeling in my lower limbs in late December. I felt joyful that I wasn’t allowing MS to define me, I was defining myself. I was joyful to be back in my teacher’s class, and to be inspired by her thoughts and guidance. I felt joyful that I’d made the effort to be there, even though new situations usually terrify me and leave me paralyzed in inaction. I’ve grown up a lot over the past few years ~ part of it is adult-hood, part of it is John, and a lot of it is me finding my balance and creating my own stability and support system. I was tremendously joyful about that … in fact, I still am.
And even now, snuggled on the couch with my man and my Lucy, I can feel joy. And I can’t quite define it, or qualify it. It’s just there. And that’s pretty cool.
pick me ups
Sometimes, in the middle of my day, I need a little boost ~ something positive to help motivate me, and keep me upbeat. Twitter is great for this, and because my brain is feeling a bit beat today (work was a doozy!), I thought I’d share some of my recent favorites.
“The best way to avoid criticism is never do anything ever. Or, do what you love, have a great life & let others spend their time criticizing.” ~Ricky Gervais
“Do what you can, with what you have, where you are.” ~Theodore Roosevelt
“Everyday holds the possibility of a miracle.” ~Elizabeth David
“A life spent making mistakes is not only more honorable, but more useful than a life spent doing nothing.” ~George Bernard Shaw
“The gem cannot be polished without friction, nor man perfected without trials.” ~ Confucius
“When you feel the world pushing against you, drop your head, lower your shoulder, dig in deep and push back.” ~Dwayne Johnson
And I’ll finish my list of quotes with one from my childhood hero, and still a woman whose career I admire greatly.
“Perseverance is failing nineteen times and succeeding the twentieth.” ~ Julie Andrews
I know it probably seems silly, but reading uplifting quotes just makes me feel so much better. Even now, revisiting them, I smiled and felt more inspired about life. Words are powerful things!
have a little faith
So, this post is going to be a little bit of a veer off the track of MS and cooking and all that jazz. And I deeply apologize for the self-indulgence of what follows, but it’s been haunting my thoughts all day.
As one may or may not know about me, I have fairly … um, clear and personal feelings about faith. I deeply believe it is personal, and everyone’s choices are their own and should be respected. Just as none of us are the same, neither should our relationship with God (or whomever/whatever one believes in) be. I believe that sometimes, the individuality of our relationships gets lost in mass organized religion. We believe that following man’s rules of the church are the measuring sticks of faith and spirituality, and we judge others for their differences or assumed short-comings. It’s a disappointing and discouraging thing.
I’ve spent time searching for something that made sense to me ~ a teacher, a leader ~ a person whose voice spoke the words of the God I believe in. I found that person in a sort of funny, ironic way. The man and I had very long discussions about our wedding, and the things that were important to us. FInding a man of faith to marry us wasn’t a huge top priority, but as the planning progressed, we realized that it was a top priority for my mother-in-law. So, as a diligent researcher, I started to look into options for an officiant. And surprisingly, I found a priest who performed wedding ceremonies. After scheduling a time to meet with him, I wrangled the man into going to Mass at the parish and it was eye-opening to both of us. In fact, in the spirit of full disclosure, it was both eye-opening and slightly uncomfortable.
Today marked our second time in attendance and –for me, at least– it reaffirmed what I’d found so uplifting the first time. Here’s the thing ~ Mass at this church begins with the Sign of Peace, and instead of just turning around in your pew and quietly mumbling “Peace be with You, ” you actually walk around and shake hands and hug and offer the whole congregation peace.
Let me tell you, during our first Mass, we both looked at each other and fumbled through it, as basically every person came up to us and welcomed us to church, and offered us a warm and confident sign of peace. There is an anonymity of going to a large Catholic church that certainly didn’t exist that day (or today, for that matter) that serves as something of a security blanket. It’s one thing to go to Mass and slip right through, unnoticed. It’s another thing to stand up and be seen and counted. That was completely unexpected for both of us.
Today, I was much more prepared. As Mass began, I took a deep breath. We’d chosen to return so I wanted to be respectful of the parish and their Mass. I walked amongst everyone, and it was truly an incredible feeling. We shook hands, we hugged, we smiled ~ my heart felt light and full of positive energy. It’s hard to describe, and I am fairly certain it sounds hokey, but as I returned to my seat, I thought what a great way to start a Sunday ~ what a great and powerful way to begin a worship. For just that small moment, life was distilled into giving and receiving peace with a room full of like-minded people.
LIfe is a funny journey ~ we’re all sort of figuring it out as we go along ~ learning and growing and choosing what defines us; what matters to us. As I mentioned at the beginning of all this, faith is and has always been an important journey for me, but also a very personal one. Today, I couldn’t get the feeling of pure community out of my mind all day. And the message of the homily was just as powerful (I promise not to bore anyone who is reading this with the ins and outs).
I guess my point ~ if there even is one in all this rambling ~ is the power of community, the power of belief in a group of people … it’s sort of amazing. Things have been challenging lately, and every now and then, it’s refreshing (and necessary) to take a step back and appreciate the good stuff. I find great comfort in having faith. And I am grateful for that today.
proactive
This will be short and sweet, because my brain is full of thoughts, but they are fragmented and constantly being interrupted by other, new and looping thoughts.
There was a moment today ~ it seemed as though time had slowed down, the world had paused and it was just me, fighting my brain and trying to take action. The mind is an incredible and powerful thing.
I was asked this afternoon what my motivation was in beginning a drug therapy for MS. I blurted out my answer without even thinking, and realized as I said it, that with the development of my MS, I have stared my greatest fear directly in the eye, and decided I wouldn’t allow it to consume me, overwhelm me or conquer me.
That was part of my driving force today, as I sat frozen, battling my mind and my fear. And when I was finally able to relax, I realized that not only did my mind control my action and inaction, but it created monsters bigger than the challenges I was facing.
I hope that in the dark moments that may come, the power of thought comes to my aid, and not as my foe.
my Oscar recap
I love the Academy Awards. I have for a very long time, and I have certain traditions that I try to keep. They are very simple ~ champagne and chocolate covered strawberries. Yummers.
A few years ago, I started having people over fo watch the Oscars, and I planned meals in addition to the strawberries, because let’s be honest ~ people get hungry. Three years ago, I did beef tenderloin, Israeli couscous with cinnamon, raisins and pine nuts and I believe asparagus. John did wedge salads to start, with a homemade blue cheese dressing, cherry tomatoes and real crumbled bacon. Two years ago, i made my Monday Night Football Polenta ~ polenta topped with Portobello mushrooms, Italian sausage, fresh mozzarella and yummy red sauce (side note: I’m half Italian, and I most assuredly do not call it gravy). Last year, we did blanched veggies and beef tips with hummus and curry dipping sauce. This year, I decided I wasn’t going to do a big thing ~ I was going to enjoy the Oscars solo (well, with the man and Lucy). And then I got a huge and awesome surprise ~ one of my dearest girl friends and definitely my oldest (since I first moved to my second high school at the tender age of 16) would be staying the night with us, and watching the awards. It’d been awhile since we’d seen each other, so I was super excited.
For the Oscars this year, I went simple again (instead of a three course meal ~ zoinks!). We enjoyed shrimp with curry dipping sauce (one of the man’s ultimate favorites), a cheese plate with smoked salmon and a cream of asparagus soup. My lovely friend is a pescatarian, so no meat, but that was a-okay. The man and I are pretty used to veggie and fish based meals now ~ it’s our new norm.
So, yesterday afternoon, after Mass and Lucy’s walk (which was ridiculously muddy, thus Lucy also got a bath) I got busy prepping for the evening (beginning by recording –just to be safe – all Oscar coverage). First up, chocolate covered strawberries. Last year, we invested in a glass bowl to create our double boiler, and I have to say, it has made all the difference in melting chocolate. My first two years, I used one of my metal mixing bowls, and I’m not sure if it just got way too hot, or if it didn’t hold the heat as evenly, but glass is by far superior.
Next up (after making John’s Curry Dipping Sauce), I began the Cream of Asparagus Soup. Not hard at all, but a couple of steps, so I referred back to the recipe a lot! Bonus ~ there were additional directions for switching up the featured veggie, so I’m looking forward to making some other soups before the weather warms up.
What I used:
3 cups fresh asparagus, cut in 1/2 inch pieces (about 1 lb)
2 cups chicken stock (or veggie stock)
1 close crushed garlic
3/4 fresh chopped thyme
1 bay leaf
1 tbsp all-purpose flour (I used gluten-free, King Arthur brand)
2 cups skim milk (or low-fat)
Salt
Dash of nutmeg
1/2 teaspoon lemon zest
What I did:
1. In a large saucepan, I combined the asparagus, stock, garlic, thyme and bay leaf. I brought it to a boil, then reduced it to a simmer, and allowed it to cook for about 10-15 minutes.
2. Once the asparagus had significantly softened, I transferred the mixture to my food processor, and blended until it was smooth.
3. Meanwhile, I added the flour to the now empty saucepan, and slowly added the milk, whisking as I went. Then I poured the pureed asparagus in, added the nutmeg, lemon zest and salt, and brought it back to a boil, stirring constantly.
4. I immediately reduced it to a simmer again, and allowed it to cook for about five more minutes. Then I served with a few roasted asparagus tips as garnish.
It was a feast, despite our best efforts to keep it simple. And to finish it all off, we sat down to watch the awards with my tradition ~ chocolate covered strawberries and bubbles (even though this year, I had Martinelli’s Sparkling Cider mixed with tonic instead of the real stuff! I always forget about special occasions when I give things up for Lent!).
I thought the Awards were great, Seth McFarlane was a fun host, the winners were deserving and the entire night a triumph. A few of my favorite moments … Jennifer Hudson singing “And I’m Telling You I’m Not Going” (Wow. She continues to amaze me. She rocks) … the cast of “Les Miserables” singing (Chills. I got chills. For real. I’m such a musical theatre nerd!) … Daniel Day-Lewis’ acceptance speech (perfection!) … “Argo” winning best picture, and everything Ben Affleck said. But especially his commentary on marriage (which, anyone with half a brain knows is the truth ~ I’ve read some of the feedback and wow people, way to focus on the negative) and some of his last words, which have become, over the past few years, my personal motto.
It doesn’t matter how many times you get knocked down. It’s that you get back up.
He’s walking proof of perseverance, and I thought “Argo” was a brilliantly constructed film ~ a beautiful balance of historical events, suspense and comedy, woven together with a thoughtful soundtrack and beautiful camera work and editing. The acting ~ while not on the level of “Silver LInings Playbook” (um, seriously, everyone should see it because it is a tour de force of amazing work by all four leads and an awesome supporting cast) paid homage to the fact that each was portraying a real person, and together made it a strong ensemble piece. Even now, having watched it twice, I am stunned that the mission existed, but even moreso that it worked.
In the end, the 86th Oscars were very satisfying, and I enjoyed every minute.
normalcy
Today was an interesting day. The man and I did some spring cleaning (it was necessary ~ piles seemed to be accumulating in all sorts of places in our house, filled with things we felt vaguely indifferent about … not very motivating during the gloom of January and February) but we also ran a bunch of errands. For a misty, bleh Saturday, I felt incredibly energetic. Possibly due to the insane amount of vitamins I am now taking on a daily basis. I told the man that I am going to write a comic book about a heroine whose super power comes from vitamins & green smoothies.
“Like Popeye and spinach?” He said. I nodded, feeling slightly deflated that my idea wasn’t as genius as I originally thought. But I still like it. 🙂
It was a good day ~ a normal day ~ and I revisited some of my posts from January and smiled to myself because even now, I’m feeling much more positive and upbeat. And trust me, I am more than nervous for my nurse visit, and self-injection tutorial. Shivers. Down my spine. Ooooh boy.
As a reward for getting so much accomplished today, the man and I are treating ourselves to a movie tonight ~ “Silver Linings Playbook”. I used to make an effort to see all the Best Picture Oscar nominees pre-ceremony, but have fallen woefully short the past few years (and since the rules changed and the number went up!). This year, the man has generously indulged my addiction, and this is the fourth nominated film we are seeing. We clearly won’t make it to nine, but last year, I don’t think I saw a single nominee in any of the big categories, so I’m very excited.
Usually we have some people over for the ceremony, but we’re going low-key this year. But I’ve still got a meal planned, fixings for chocolate covered strawberries and fake bubbles (we gave up drinking for Lent). I’m in a blogging kind of mood, so I will share all the details tomorrow, after church. For now, we’re scooting out the door to catch our movie. Hope you have a great Saturday night, too!
choices
Let me tell you, dealing with MS, a new restaurant finally being officially official (whoppee!) and planning a wedding … it can leave a lady a little exhausted. I’ve had so many moments during this very speedy month of February when I have been bursting with things to type. In fact, I am tacking on to a partially written post right now, because there’s nothing that can quite replace words written at a specific time.
On Monday, I woke up to the awesome news of being selected in the Broad Street lottery to run this year. In a fit of enthusiasm, I signed up on February 4th because I had decided that I wasn’t going to let MS limit me, or change me. I’d always wanted to run Broad Street more than once, and I didn’t want weirdly numb legs to prevent me. Lucy and I have ramped up our jogging this week, and while I am sore, I am also exhilarated. Things have changed in my life ~ there’s no disputing that. But who’s to say that in a lot of ways, those changes haven’t been for the better?
Let’s backtrack a little bit … Here’s where I was at on February fifth ~ feels like yesterday. But as I said, February is feeling pretty speedy this year.
When my doctor handed me a pile of information about various MS drugs, I felt a little bit overwhelmed, as well as completely disinterested in learning anything else. It was a long day, overloaded with information, and settling in for an evening of drug research did not feel like the way I wanted to end it. (No, I ended it with Nutella).
But now, as my follow-up appointment looms in the not-too-distant future, I know I need to buckle down, and get to it.
Interestingly enough, I’ve done more research on alternative ways to heal. I’ve never been a big pharmaceutical kinda gal (I still can’t remember the difference between ibuprofen and acetaminophen and which one should be taken for what). What’s so fascinating is the powerful link between diet modifications, exercise therapy and remissions in MS flares.
From January 21st until February 18th, nifty promotional packages for four different MS drugs sat on my living room coffee table, reminding me that I was on a timeline. It was strange ~ I’d been anticipating the diagnosis. In certain ways it was a relief. Finally, an explanation for all the hoops I’d been hopping through for the past six months. Instead of being full of questions and daunting ‘grayness’ about all the symptoms and strange new physical difficulties, I was full of questions and curiosity about a known quantity.
Once I metaphorically ripped the band-aid off, the research wasn’t bad. It was interesting and comforting to read forums where people were struggling with the same choices I was facing. Not only how to deal with having MS, but more specifically, which drug therapy to use, and why. I’ve had a lot of people in my life weigh in on how they believe I should be living post-diagnosis, and I know that their thoughts come from a place of positivity and concern. But here’s the other truth. Whatever decisions I have made or will make need to be ones I feel one hundred percent about, because my belief in the course of action is, to me, half the battle. The placebo effect, if you will. It’s pretty much exactly what my doctor said when he handed me the different drug options.
Here were my choices (I like to think of choosing as picking the least of a bunch of evils).
Copaxone. For those of you versed in the MS world, this one is a synthetic drug (and not an interferon) treatment, and the positives are that the side effects aren’t as extreme as the interferons. The negative for me was the abundance of instances of really bad injection site reactions. Urgh.
Avonex. This is an interferon treatment (interferons help to suppress the immune system, and since MS is the immune system attacking the body instead of the invader, it’s a good thing). It’s a once-a-week treatment, and shares the same symptoms as the other two interferon treatments ~ flu-like symptoms, possible liver complications & exacerbated feelings of depression. Plus, it’s injected intramuscularly, so it’s a bigger needle. Yuck.
Betaseron. Another interferon treatment (Interferon -1b, versus -1a like Avonex & Rebif). Betaseron is injected three times a week, and has the same side effects as Avonex. Plus side ~ it’s a subcutaneous (under the skin) injection, so they make automatic injectors and the needle is much smaller. But all the bad stuff … still the bad stuff.
Rebif. Basically, Rebif is the same as Avonex, but it’s injected subcutaneously three times a week. Drawback ~ the dosage is nearly three times as high as Avonex. Where would one advance to, if necessary, if one started out with the strongest dose?
I made my choice on Monday ~ despite worries about my insurance coverage. And this week has been a flurry of phone calls from the drug supplier, the drug representative (contracted out by the insurance company to represent the drug), the drug nurse company and the pharmacy. And starting next week, I will officially be on a medicine that I may take for the rest of my life. Bananas.
On a more positive note, the thing I believe in more than the drug is the idea of making smart choices regarding my diet and fitness routine. Luckily, the man is on board and we’ve been systematically making changes in our life since my diagnosis. There is an absurd amount of information, and everyone is more than happy to talk, and offer information that has worked for them, or things they’ve read or heard. The MS community is interesting, and full of incredibly strong, positive and incredible people. Maybe because MS is unique and individual to each person, it allows every person diagnosed to choose their own path to wellness. There’s something empowering about that. Yes, it’s not ‘technically’ curable, but there are a lot of people living with MS who haven’t had flares in years, people who have been able to go off their medication because their health has improved so drastically through healthy and smart living choices. Those things are uplifting, and feed my hope that as time goes on, I will be a smarter, stronger, healthier and more well-informed person than I am today.
wha?!?!?
Got inspired today, and made a new recipe, which if I recall correctly, I found on a vegetarian website. As I was stumbling through the steps, I could tell that not only was I uneasy about the possible results, but so was the man.
Luckily, we needn’t have worried. It was pretty good. Even the man, whose eyebrows are perpetually raised at vegetarian, gluten-free meals, enjoyed it. Win for me 😉
What you need:
1 1/2 Tbsp Cooking Oil (I used Olive Oil, but the recipe wasn’t specific)
1 large onion, chopped
2 yellow bell peppers, cubed
3 cups cubed Butternut Squash (I cheated, and used a package that my grocery store sells)
2 cloves garlic, minced
2 Tbsp green curry paste
1 13.5 ounce can of Light Coconut Milk
2 cups Spinach, firmly packed
1/2 cup chopped fresh basil
1/4 cup chopped fresh cilantro
1 cup dry Ancient Harvest Inca Red quinoa
2 and 1/4 cups water, divided
What to do:
1. Heat oil in large saucepan over medium heat.
2. Add onions. Sautée for 5-7 minutes.
3. Add bell peppers. Sautée for 2-3 minutes.
4. Add garlic and green curry paste; mix over heat for 1 minute.
5. Add butternut squash and coconut milk. Mix together as you bring to a simmer. Cover with lid, and allow to simmer to 20-30 minutes (squash should be soft to the touch). ]
6. In a medium pan, combine 1 cup quinoa with 2 cups water (or veggie/chicken stock). Bring to boil and then reduce to simmer and allow to cook for 10-15 minutes, until water is absorbed (white line should be visible on individual quinoa).
7. While everything is simmering, combine chopped cilantro and basil with spinach and 1/4 cup water in a food processor. Blend well.
8. When squash has softened, fold in spinach/cilantro/basil mixture.
9. Serve curry mixture over Inca Red quinoa. Voila! Deliciosa!
D5 Creation