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.