choosing tysabri

I’ve been diagnosed with MS for about three and a half years.  Who knows how long I’ve had it ~ they don’t know what causes it, and I was first tested at a very young age.  MS is a tough diagnosis, and they didn’t have enough when I was twelve.  But I remember getting the diagnosis at thirty-three and instead of being immediately scared, I was relieved that finally an explanation existed for how I felt.

After that, i got scared.  After breaking my foot and taking forever to heal, and then slowly losing the ability to walk any distance, or see anything clearly.  I got scared then.  I was on four different medicines before my doctor convinced me to try Tysabri.  We sat in an office for hours, debating the pros and cons, asking a myriad of (what seemed like) trivial questions. Dissecting all the options. Addressing the fears. It was probably the moment that I decided to trust this man who’d always seemed somewhere else, distracted, too in his head.  Who’d stared intently at a screen and told me I was a tough case.  This man who said he’d tell his wife to try Tysabri, despite all the possible side effects.  That it was my best — my only, really — option.  We’d tried everything else.  Nothing else worked.

There’s a difference between doing something because you want to, and doing it because you have to.  What I’ve found, across these years, is that understanding why I have to, and then learning why I would want to, is the best formula for me.  In 2012, if you’d told me that I should be a raw vegan who never drank wine and who went to sleep at 8.30 at night, I would have laughed out loud and then gotten internally angry.  Truth.

I’m not a raw vegan now, and I do drink wine.  But whew, the difference between who I was then, and who I am now — worlds apart.  Today I can say, very honestly and without a tinge of irony, that some of my favorite foods include spiralized zucchini, green smoothies, kombucha, and raspberries (to be fair, raspberries have always been my favorite).  A good day for me begins with a green smoothie, includes kombucha at lunch and ends with a sweaty bike ride on my stationary bike, wild cherry flavored sparkling water, and a dinner full of veggies.  Zucchini with Portobello is a favorite.  I also love peppers.  Mashed cauliflower is delish.

I’m pretty sure my 2012 self would look at my 2016 self and roll her eyes.  She would think this person I am now is being absurd, and that cheese and red meat never killed anyone.  That life is meant to be lived and enjoyed.  Wine is good for you.

But the thing that has inherently changed is that my life feels infinitely better when I live clean.  When I hit goals on my bicycle, or discover a new recipe full of veggies that tastes good ~ those are great moments.  I love my routine, the rhythm of this new life — the way things feel.  But I wouldn’t have done it by myself and I know that.  MS made me do it ~ MS made me appreciate taking care of myself.  MS helped me see the everyday benefits of exercise and hydration and proper sleep.

In three days, John and I are heading to Iceland for his birthday.  We booked the flights one night in November watching “The Secret Life of Walter Mitty,”  As the trip has grown closer, we’ve gotten more and more excited.  I just booked our tickets for the Blue Lagoon on his birthday.  We’ve planned our daily excursions, and our wish list.  We have hiking poles, waterproof hiking sneakers, lightweight packs and rain coats.  We have awesome sunglasses and lenses for our camera.  We cleared out our iPhones over the weekend so we both have tons of storage.  We’re ready.

And if I hadn’t listened to my doctor, and then systematically embraced my new life limits, we wouldn’t be going to Iceland.  Because I wouldn’t be able to walk more than the length of one city block.  I wouldn’t be able to climb stairs without holding on for dear life.  We wouldn’t have been able to go to Venice this past February, and we certainly wouldn’t have booked another trip to Jackson Hole for September.

Tysabri is a little scary.  There are instances of patients contracting a fatal brain infection.  It messes with your organs.  I have so much blood drawn on a regular basis, it would seem strange to people who don’t have to deal with an incurable disease.  But I’m probably healthier now than I’ve ever been.  That’s the craziness of life.

When I was first diagnosed, John did a lot of reading about MS and I did none.  I thought ~ yeah, I deal with it personally every day, I don’t need a thousand other people telling me their struggles and sad stories.  My numb feet and spotty vision are good enough for me.  But John read people’s accounts of how they dealt with their disease.  And I remember, very clearly, a story about a woman who was diagnosed and now swims every day, eats super clean and proclaimed that she was healthier now than she’d ever been.  At the time, I thought that was ridiculous.  Now, it makes sense.

This past weekend, my little brother did a 36-mile hike in Banff Canada.  I see that, and I don’t get sad or angry.  i get motivated.  I can do that.  Yeah, I have MS.  That’s a bummer.  But it doesn’t change everything.  It just pushes you to look at life in a different way.




On Wednesday, John and I celebrated our third wedding anniversary, and the eighth anniversary of our first date.  And Thursday marked the fifth anniversary of this blog ~ begun as a cooking blog, as I figured out my way around a kitchen, and then becoming something else entirely.  Later this month, we’ll celebrate John’s birthday, which also serves as the year mark of my little brother meeting his lady-love, Joanna.  And in September, Joanna will move to Austin and they will begin a joint life.  Everyone, hold your breath ;).

I’m a big birthday and anniversary person.  I believe in celebrating people, not only for who they are, but for what they’ve been dedicated to.  Today serves as the last day of work for a man who pre-dates me at our company.  I think ~ besides my boss ~ he’s the only one left who ranks above me for longevity.  Over six and a half years, and now he’s moving on, to do something different.  To learn from someone  new.  My heart broke a little when I hugged him goodbye ~ sweaty and hot from moving offices (again.  for the seventh time).  I wasn’t prepared to say goodbye.  I was sad that we weren’t doing something more to thank him for the years he’s worked with us.  But my boss (the owner) doesn’t really believe in anniversaries, or acknowledging people’s time with the company.  I hit year after year in January, and he’s never once given any indication of knowing that it’s my anniversary.

I think it’s important to celebrate people.  To say thank you for your time.  Thank you for your existence.  Thank you for your dedication, your loyalty.  I think it encourages people, makes them feel appreciated.  I love celebrating things with my hubs because I like knowing that after all this time, after all these shared memories and our joint lives, we still laugh together, our eyes still sparkle when they meet, we still turn to each other when things get tough.  We know each other better, we understand each other’s ebbs and flows.  It’s a good thing ~ that one day we will have shared more time than spent it apart.

It’s already hard to get through the day, to keep your head up when one thing after another comes crashing in after you.  Saying thank you, for your time, for your spirit, for your thoughts and contributions ~ it’s a big deal.

I’m sad that Haronn is leaving us.  I’m sad that he won’t be opening dough or garnishing pizzas the next time I rush through the restaurant. He won’t be there to harass me about something or give me a message for my husband about football.

I wish him all the luck in the world.  And a small part of my heart is deflated, knowing that soon, other people will know that he loves the Green Bay Packers and Brett Favre; that he doesn’t allow his children to believe in Santa because he works hard and they should know that he got them their gifts, not some bearded man in a red suit.

I’m sad that life is moving on, and changing, and no one asked if I was okay with it.