focus

One of the things I struggle mightily with is staying focused.  I seem to recall a time when it wasn’t that hard.  But now, being unemployed and having M.S., I feel like after the wicked fatigue, the brain fuzziness is the worst.  This morning I stood scrolling through my phone for a good 40 minutes in the kitchen.  For no reason.  No purpose.  Just reading random articles about Steelers training camp and looking at people’s vacation  photos.  What’s the point of that?  I mean, the photos are always adorable (or funny) and I do care (maybe too much) about the status of the Pittsburgh Steelers.  But couldn’t I have used my time more efficiently?

Um, yes.  Yes I think I could.

And then, this afternoon, following some intense procrastinating, I finally made my way downstairs to the garage and set up my ‘Insanity’ workout.  And then wasted even more time.  Doing … I don’t even know.  I. Don’t. Know.

When I go to bed at night, it’s usually too late.  But I promise to get up on time anyway.  Which I don’t do.  Then, when I finally drag myself out of bed, I’m running behind whatever phantom schedule I’d made for myself the night before.  Today, when John came upstairs after his morning workout, all I said was “I have to make better decisions.”

And that is certainly part of it.  But another part of it is the idea that when you don’t have structure in your life, everything feels amorphous.  You just float around, certain there will be enough time.  Confident that all will be well.  There is something weirdly relaxing about that.  And I am lucky enough to feel that way because John is successful enough that I don’t need to work.  But it’s also a little disconcerting and disorienting.  I’ve spent my whole life independent.  Taking care of myself.  (Well, y’know, after my parents took care of me and I learned how to do a little bit of adulting).

But I’m so tired and so air-headed nowadays, that the idea of going back to the workforce is absolutely terrifying.  I think back to the end of my time at my last job, and I was so unhappy, I struggled so painfully every day to just keep my head above water….  Could I do it again?  Could I find the strength to have a career and keep my health under control?  Is finding out worth the risk?  I don’t know.

I read a quote recently — something about happiness is what you find beyond the fear.  It was the idea that if you felt uncomfortable or unsure, that maybe it would be worth pushing through to see what exists on the other side.

So I decided I would push through.  I would conquer my fear and reticence to try to sell skincare online.  I would reach out. I would embrace it.  What could the worst result be?  A no?  And so, this August, I am going to fully embrace selling Rodan + Fields skincare.  Because it is the best stuff I’ve ever used (and if you know me, you know I’ve been obsessed with skincare for a long time), because the people who brought me into the company have been unbelievably supportive and encouraging and I think it will be a work environment I can believe in and be proud to be part of.

I hope it helps me find whatever it is I feel I am missing.  I hope it is a positive experience.  And I hope I can help other people discover these great products (that might sound like a line, but I do inherently believe it).

 

revisiting an old friend

A few weeks ago, John and I spent the weekend in Mansfield so he could help his dad do some projects around the house.  This left me at a loose end, but I was determined to stay as healthy as I could so we got a portable blender and I brought up all my smoothie goods, plus my laptop to google some work outs.  We set up our tent and canopy, plus the love seat bench that we got this year with our REI dividends.  And when I was finally motivated (aka, ran out of ways to procrastinate longer), I looked up some things on You Tube, and got to getting sweaty.  I didn’t hit my move goal though, and that frustrated me. Three days in 2017 I haven’t hit it, and one was because I couldn’t manage to find a good workout.  Grr.

I was fairly determined not to let that happen again this past weekend.  I still packed up my blender and my laptop.  We set up the tent and the canopy (and Lucy, on her long lead).  But this time, I decided to pull the trigger and sign up for Beach Body On Demand. Because I’ve never done a workout that I’ve found as challenging yet satisfying, as ‘Insanity‘.

I think maybe I thought that since I’ve been working out regularly that somehow the program would be easier?  Um, not really.  I mean, some things were ‘less hard’ but let’s be honest here.  Those workouts are killer.  And now — added bonus? — there are a million different versions of ‘Insanity’.  I stuck with the original because I knew it was tough and I hoped it would burn calories.  And because I’m a little insane, I did two workouts in a row.

For the past two days, my legs have been so unbelievably stiff and sore, I wondered what in God’s name I’d been thinking.  I would never do an Insanity workout again.  But, then I decided to stop being a baby, and I fired up the laptop yesterday afternoon.  It was a very tough 40 minutes.  When I climbed on the bike for a cool down afterward, it felt like a cakewalk.  And then, I pulled myself up the stairs, and decided to take a bath with salts, in the hope that it would help my poor legs recover.

It did!  I woke up this morning and didn’t feel like my legs were dying.  Not only that, but for the first time since I began riding my bike last year, I was enthusiastic about a different kind of work out.  I got up, looking forward to my date with Shaun T, and set about my day.

I remember doing Insanity several years ago — before the MS.  It’s challenging in different ways now — I have little to no bounce in my legs, so I am working on that.  But I am less angry at Shaun T this time around. In fact, I’m not angry at all.  He makes me smile.  I feel encouraged. I am really enjoying it, and how it’s forcing different muscles to work harder.  Working out every day isn’t really anyone’s idea of a good time (well, maybe someone?  but I don’t know that person) but I am feeling really glad about my decision to branch out and do different things.  I need to work out every day — it keeps me strong, it keeps me focused on being as healthy as I can be. And to be honest, it’s a little bit of a relief not to ride the bike for an hour and fifteen minutes every day.  Although, I’m sure I’ll start to miss it eventually.

fridays

I realized today, as I rode the elevator up from the parking garage, that I’ve been coming to UPenn for meds for two and a half years.  I’ve known my nurses for a long time.  They smile and wave as I sit in a bed, getting juiced up for the month.

Tysabri.  What a game changer.

It took me awhile to try it.  I spent 2014 in a downward spiral of frustrating physical handicaps – Lydia (my walking cane), numb limbs, the inability to climb stairs — and my favorite, when my right hand would just stop working out of nowhere.  I’d been on Avonex, Copaxone (my least favorite), Gilenya (oh lordy, the testing) and finally, Tecfidera.  Nothing worked.  My body was sliding into utter disintegration and chaos.  I burst into tears a lot, got huffy and wallowed in feelings of defeat and despair.  Dr. M prescribed Tysabri three times before I actually made an appointment.  Three times.  Three mailings full of shwag I would never use (bags, neck pillows, etc etc) and a welcome packet with smiling people who looked less like MS patients, and more like catalog models.

My first infusion (after sitting for hours in a room with John and Dr. M hashing it out) was on December 17th, 2014.  Hubs came with me because the entire experience was a little overwhelming.  My second infusion in January 2015 was three days after I was diagnosed with shingles (that’s right, shingles — I was thirty-five).  I didn’t really notice a difference, but John did.  Around April he casually mentioned that I could walk from our living room to the bathroom without reaching out to hold walls and countertops.  By July of 2015 I wasn’t even using Lydia that much.  I would forget her at home on work days.  We moved into our new house, with two flights of stairs, and I was okay.  I had to hold onto the railing and take my time.  But I was okay.  Slowly, it got easier.  I made the transition from taking one step at a time to one foot after the other.  It was a little like learning to walk all over again.

I wore heels again for the first time in March 2016.  I still can’t do stilettos, but a nice wedge or a thick boot heel?  Yes, please!  And then, this June, I got my first manual car for the first time since 2012.

I still have tough days.  I find the brain fog comes a lot more often, and a lot earlier than it used to.  But I ride my bike every day.  I eat as well as I can (which isn’t always great, but I do my best).  I come in for my medicine without fail.  All these lovely things help me live as close to a normal life as I can hope for.  I won’t give up wine (I know plenty of MS peeps who stopped drinking and I agree, it doesn’t help the brain fog at all, but man, it’s so tasty).  I still have cheese and gluten (albeit sparingly).  I try not to think about the terrible things my medicine has caused in other people.  Because for me, Tysabri gave me back my life.

In a small way, I have come to associate Fridays with medicine.  I know that Fridays are great for the working world — last day of the week before the weekend.  In my world, every fourth Friday is when I get to come into the hospital to fill up on whatever it is that makes my life better.  I’ll take it.

today’s goals

I definitely woke up  much less stiff and sore this morning.  But I also had to do a very modified work out yesterday (due to my sore knee).

Hubs and I are headed to his parents this weekend so John can help them do some projects (which involve climbing on the roof, so I’m guessing they are both serious and necessary).  I’ve struggled with travel since the whole MS thing, because I am a creature of habit, and those habits involve food (ahem, smoothies).  So yesterday, I set about finding a small, portable blender so I can have a smoothie in the morning while we are away from home.

Amazon really dropped the ball.  I originally ordered a blender that had a guaranteed delivery date of tomorrow, just to have the tracking information update this morning when I checked shipping.  Thanks Amazon, so glad I have a Prime Membership and infinitely more glad that it’s so efficient.  Smoke could be seen coming out of my ears and in a rage, I cancelled the order.  What good does a blender do me on Monday?  No good at all.  None.

So, today, my goals include hitting my Move goal (aka burning over 800 calories according to my watch), drinking at least four bottles of water in preparation for meds tomorrow (being hydrated means the nurses can find the veins and saves me additional angst because I really don’t love needles) and finding a portable blender at either Kohls (I’ve googled, it seems they have quite a selection) or BBB (I’d rather hit the jackpot at Kohls – it’s closer to home).  I’ve done my meal planning for the day – salad for lunch and veggie noodles with chicken sausage for dinner (I had sushi last night, because Hubs had to go meet a work associate at the last minute and take him to dinner).  We also have to pack up the truck for the weekend — tent for camping in the yard, air mattress, blankets etc etc.  I’m still trying to figure out what workouts I will do while in Mansfield.  But I’m sure I’ll come up with something.  Additionally, the paper has begun to accumulate on my desk, so I should probably sift through that before going away for a couple days.

Ah.  Life.  Always keeping you on your toes.  Wishing everyone a great day filled with lots of smart food choices, a healthy sweat and tons of hydration.  It’s a humid one in Southeastern PA, so I’m sure the MS will be buzzing!  (Literally.  It feels like buzzing in my fingers and hands).

a day in the life

I’ve had a rough few months.

Not in a bad way.  In a good way.  But the past few months have not been easy.  I’ve felt really lost a lot of the time.  I keep coming to this blog wondering what I’m doing.  What do I have to say?

What do I have to say.

I started this blog about six years ago, with the idea of learning to cook and sharing the amazing recipes I was sure I would be making.  And along the way, I got MS.  Which really changes the shape of a person’s life.  About a year and a half ago, I started to work out in earnest.  To be fair, I don’t know if I had a specific reason.  Just the idea that I knew I should be working out, and we’d spent some cash on a stationary bike.

Earlier this year, I though to myself, I should make this blog about MS.  But lemme tell you something — that is both challenging and slightly depressing.  MS is not fun.  It challenges a person every day in every way.  But it also makes you look at things from a completely different perspective.

Would I be biking nearly 170 miles a week if it weren’t for MS?  Maybe.  But probably not.

Would I have an addiction to green smoothies?  Um… I’m going to guess no.

Would I constantly be trying to push the boundaries of my dietary restrictions in the best possible way, and make things that normally sound dismal delicious?  Absolutely not.  I mean, I think we all start to get healthier as we age — recovery isn’t as quick, and we learn that taking care of this body we were given really does help lead a more fulfilling life.  But I think the extremities of the consequences I deal with really helped clarify my life.

I really don’t like absolutes, so when I try something new, I think of it in an 80/20 capacity.  I’ll be good 80% of the time, and take my chances 20% of the time.  Over the past few years, I’ve found this approach works best for me.  I think everyone responds to boundaries differently — some of us might like the all or nothing approach.  But all that all or nothing accomplishes for me is a truly terrible attitude and massive resentment and unhappiness.  That isn’t to say that over time I haven’t found certain things are better at 100% (green smoothies are an example — a day without a smoothie means feeling much more lethargic and foggy, having lower energy and waking up in gripping stiffness and pain the next day — all of which I’m sure, sound amazing).  But across the whole spectrum, 80/20 has become my go-to.

And as I struggle each day to make the best decisions I can (I succeed sometimes, but I also fail … a lot) I thought maybe it might be something I could share here.

I have meds on Friday, which means I’m tired this week.  And the heat and humidity of July are not my friends.  When I woke up this morning, after about ten hours of sleep, my entire torso ached every time I inhaled.  My legs were unbelievably stiff, and my left knee hurt.  I mean, hurt.  Which I find so depressing, because it means I won’t have a good ride on my bike, if I ride my bike at all.  And that, in turn, means that my “Move” circle on my watch might not get completed.  Highly unsatisfactory.

I knew John had a long conference today (we are still adjusting to him working from home – finding routines and rhythm). I tried to make my bullet point list for today — things I wanted to accomplish.  I was going over to a barn near my house that does therapeutic riding with disabled children with my mother, but otherwise, nothing on the agenda.  I’d done some grocery shopping yesterday, so I figured I’d make something yummy.

I did a slight variation of a black bean & citrus salad that I first made years ago (from Iowa Girl Eats).  Let me tell you something ~ making a recipe when you are infinitely more comfortable in the kitchen is so much more fun than freaking out about measurements and ingredients every five seconds.  This recipe *could* be healthier (I used Israeli cous cous cooked in chicken bouillon instead of quinoa and water) but it’s still a pretty good one.  It’s definitely a recipe that makes me feel both healthy and happy.

What I used:

1 1/2 cups pink grapefruit segments

1 can black beans (rinsed)

1/4 cup chopped cilantro

2 ears of fresh corn (cut off the cobb raw)

1/4 cup dried cranberries

1 cup dry Israeli Cous Cous

1 1/4 cup chicken bouillon

 

 

 

 

 

Dressing:

Juice of 2 limes

1/2 cup EVOO

2 tsp Cumin

Salt & Pepper to taste

 

 

 

 

 

Directions:

1.  Combine cous cous and bouillon in a medium saucepan.  Bring to a boil and then immediately reduce to a simmer.  Cover and allow cous cous to absorb liquid — about six- eight minutes.  Keep an eye on it and stir occasionally so the cous cous doesn’t stick to the bottom of the pan.  Once the pearls are inflated, transfer to a  bowl and let cool to room temp.

2. Combine grapefruit, beans, corn, cilantro and cranberries in a medium to large mixing bowl.  I fold together with a spatula so that the grapefruit doesn’t break down too much.

3.  In a separate bowl, squeeze lime juice and combine with EVOO, cumin and salt and pepper.  Whisk together.

4.  When cous cous has cooled, combine with other ingredients, pour vinaigrette over and continue to mix until well combined.

5.  It’s delicious.  Trust me.

 

 

 

 

 

 

 

I’m heading down to the gym now ~ I’ll probably do some burpees and squats (depending  on my knee) and then about 20 miles on the bike (again, knee dependent).  I’m hoping to get back to a regular yoga practice soon — my muscles are feeling tight from all the cardio and strength work outs.  Hubs and I have sweet potato noodles to make for dinner tonight (Wegmans = the best).

I’m already on my third bottle of water, so if I focus, I could probably get four in today (which may help with the soreness and stiffness).

 

conundrums

Having MS.

It’s sort of like everything all the time, and nothing at all.

I don’t really know how to better describe it.  How it affects everything, and is always on my mind, but at the same time isn’t that important at all.

When I talk about my MS, I usually feel like it’s a throwaway comment ~ not that big a deal, just the norm.  But then, halfway through the words coming out of my mouth, I realize (usually from the changing facial expression of the person I’m talking to) that perhaps, my comments are a little more jarring to them.

I guess it’s like …. nope.  I can’t think of anything that it might be like.  It’s just … my baseline, my reality.  I don’t want sympathy.  I don’t want pity.  But I also don’t know how to exist without it anymore.  It’s such a huge part of my whole life.  It influences everything I do, everything I wear, every decision I make.  I am no longer myself without the MS.  I am MS, it’s become part of my framework.

I don’t bring it up on purpose … and what I mean by that is, it’s so much a part of every aspect of my life, I don’t know how to exist without acknowledging it.  Yes.  Maybe that’s it.

I guess my throwaway bio on Instagram and Twitter are the truest of true … I am an MS warrior — BUT, I’m so much more than that.  Sometimes maybe, it’s hard to remember that there’s so much more, when I lead with such a wham bang punch.

phantom bruises

So, for those of you not blessed with MS, let me tell you that the amount of bruises I find on my body are both intriguing and puzzling.  I don’t know if everyone with MS bruises easily, but what I’ve found is that a stiff breeze can color my legs purple and it takes weeks for them to fade.

The problem with this issue is that in the summer, my legs aren’t safely ensconced in pant legs, and therefore, the challenge becomes how to minimize the purple and blue.

A few years ago I got really serious about taking care of the skin on my legs.  It sounds (to me) a little over-the-top, but I was tired of having ugly, discolored skin all the time.  I researched exfoliators (I currently use Shiseido Body Illuminator, which I like a lot), tried out a bunch of moisturizers (I like Vaseline’s Cocoa Butter but my favorite is Johnson’s Baby Oil with Shea Butter) and got much more serious about using shaving cream.  I order from Harry’s, because you can get eight blades and two cans of shaving cream for $28.  Pretty decent compared to what the hubs spends for his razor blades.

But the product that changed the game was discovering Tarte’s Maracuja Rainforest Glow ~ a sort of tanner/body perfecter.  I guess it’s kind of like a tanner/foundation for the legs (or anywhere?, but I only use it on my legs).  It definitely hides the bruises, and it doesn’t take eight hours to kick in.  Sadly, Tarte discontinued it, so I desperately ordered the last three bottles I could find on eBay to buy me some time to find something similar to it.  Fingers crossed!

Hubs and I are heading to two Fourth Parties ~ one today and one tomorrow, so hopefully I can cover up the huge bruises on my calves (from what?, you ask ~ yeah, I have no idea.  I think the one on my right leg was from brushing into the car door too hard while unloading groceries … but the other ones?  Complete mysteries).

Anyway, Happy Fourth of July everyone!  May your parties be fun, festive and patriotic!

every morning

This morning John and I slept in.  What that really means is that he gets up with Lucy at 6a so she can have her breakfast and a little walk around the neighborhood to do her duty, and then he comes back to bed.  So really, it’s a win for me.  I always mean to get up but the beginnings and the ends of days are tough for me.  It’s tough for me to get going, and it’s tough for me to stay awake at night.

I thought, since I’m trying to get back to this space a little more, that I’d begin July with a post about how I begin most of my days (barring meds, or MRIs like yesterday, when we get up at 5a and head into the city).

Every morning, I get up and put on my watch.  That begins the tracking of my movement for the day.  Also, the earlier you start your stand hours, the sooner you hit 12.  I check my Nalgene by the bedside – how full it is, etc.  I have four Nalgenes, three of which are in constant rotation at the house for my water tracking.  One is purple, one pink and the last green.  Each is 32 ounces, so based on the idea that a person should drink half their body weight in water ounces, I need to have about 80 ounces of water a day.  And more, because I exercise.  So I make a mental note of which color bottle I’m starting with, and how many ounces are in it.  I try to have three full bottles a day, plus any extra waters at restaurants, or our other water bottles that fit into the Jeep (and actually keep water cold). Having the different colors helps me remember (if it’s a tough brain day) how much I’ve had.  I can track by color.

Once I’m vertical, and have allowed my body to have its morning spasm (always enjoyable), I get dressed to work out.  My goal is always to ride the bike early, so that the rest of the day is free, but I will confess that that doesn’t happen all the time.  I get distracted doing laundry, or cleaning the floors, or reading a magazine.  But I now have a whole section of work out clothing in my closet (thank you Fabletics) so I’m usually go to go with clean clothing.

I’m a skincare junkie, so I try to splash my face with some cold water and then do a quick wipe with toner.  Then I slap on some lightweight moisturizer with SPF so that when Lucy and I walk around the neighborhood I don’t get sunburned.  I also psychotically brush my teeth and use a tongue scraper (sidenote, if you have never used one or don’t even know what it is, let me tell you that it is the best thing for making your mouth feel clean and keeping your breath fresh.  I am obsessed with mine).  I will confess that the time I spend in the bathroom at the beginning of the day and the end of the day is not a small amount.  But … I like taking care of my skin and my teeth.

Next up I take four drops of liquid Vitamin D and B12.  I do 8000 IUs of Vitamin D a day and 1000 of B12.  Probably a little higher than the average Joe, but I have multiple sclerosis, so it works for me.  I also always  make my bed and clean up any clothing I might not have put away the night before.  Sometimes I’m so blindingly tired when I go to bed I don’t even remember, so despite my OCD tendencies, it isn’t uncommon that my clothes are folded and left out on the bench under my window.  Somehow, despite fatigue, I still manage to fold my clothing before bed.  Just not put it away.

I also put some foot cream on my right foot, because the nerve endings in that foot are shot, and so I have a build up of dead skin and calluses (super sexy, I know) and my podiatrist prescribes me an ointment that eats away at that stuff.  It’s pretty rad.

The best part of my morning is my green smoothie, which I almost always have first thing, before Lucy’s walk, my bike ride, or anything else.  I’ve been doing green smoothies for a couple years now, and our basic recipe is pretty delish, but sometimes we switch it up if we have extra fruit (recently we had mango and it was so.yum) or something we want to try.   We used to use the NutriBullet, but that burnt out after a couple years so now we use our Vitamix.  If you don’t have a Vitamix, consider getting one, because it is glorious.  I absolutely love it.  I put baby spinach, orange juice, milk, ice cubes, organic peanut butter, a banana, Field of Greens supplement, Matcha, ginger, turmeric and a little cayenne pepper into our smoothie. I used to use coconut oil, but I like the flavor of a nut butter better.  You could make it healthier by using nut milk and nut butter, but John and I have tried (to this point unsuccessfully) to make the switch away from cow’s milk and intermittently used different combos of almond butter, cashew butter and others, but because it’s such a routine thing, I buy the easiest stuff to get when I’m trying to get in and out of Wegmans as fast as possible.  (That store is NEVER not crowded.  Seriously.)

With our smoothies I dole out our vitamins, a Men’s Multi for John, Women’s Multi for me, and a Vitamin C boost.  Sometimes we take Airborne (depending on the season and how we are feeling).  After that, it’s a walk around the neighborhood with Lucy, which I consider my warm-up, and then some burpees, squats, ab stuff and a bike ride.  My goal was 100 miles a week, but I’ve upped it recently to 150 (I was consistently hitting about 135 a week, and figured I needed to increase the challenge).

Anyway, that’s my morning.  That’s my little recipe for trying to feel the best I can regardless of how my body and my disease are feeling.  I read in one of my health magazines an interesting piece about hitting a workout plateau.  And I think I’ve begun to mentally apply it to MS.  A lot of times people hit a plateau because they don’t believe they can keep going/push harder/lift heavier/last longer.  But mostly, it isn’t about what our muscles are capable of, but what our mind has decided.  So sometimes, when I am near tears and feeling utterly beaten and frustrated, I think about that.  And I try to focus on succeeding and overcoming.  And once I believe I can, it makes it a lot easier to accomplish.  So, even when my bones ache, and everything feels heavy and clunky, I make myself get up, strap on my watch, and begin my day putting goodness in my body.

Happy July all! xo

memphis

Last weekend I logged onto my admin page for this blog, and I couldn’t for the life of me get the ‘new post’ page to load.  I was frustrated.  I had something to say.

So I typed it in a word document, determined to post it the next day.

But time has a way of slipping through even the most diligent of fingers, and my fingers, in regards to this blog, have not been very diligent of late.

I’ve re-read what I wrote a few times.  But for some reason, am no longer compelled to share it in its original form.  What I will share is the general idea of what the post was about.  And -hopefully -make it better.

My new car.

John and I purchased a brand new, all-white, fiftieth anniversary Chevy Camaro last Friday.  It’s a 335-horsepower V6 manual.  It sits luxuriously in our driveway, exuding power and sexiness.  I often look out the front window and down at her low profile roof, all slanted windows and curves.  I wonder who the lucky driver of this magnificent beast is, and giggle knowing it’s me.  It’s sort of hilarious.

But the car is more than that.

It’s a return, for me, to driving a manual car for the first time since being diagnosed with MS.  When I test drove it, my palms were sweaty, I was convinced I couldn’t do it — would stall out, grind the gears, ride the clutch until the acrid smell of burning filled the air.  But it wasn’t like that at all.

Driving stick is a little bit like riding a bike.  Once you know how, you know how.  And it comes back magically, as though all those years of driving automatic never existed.  As though you’ve always known the feel of the road through your gears.

Maybe I drove it too fast.  Took a corner badly (ps. can she handle or what?!?).  But it was intoxicating.  Even the nervousness of the visibility and the rumbling power under the hood could not dampen the pure exhilaration.

The past few months have been a roller coaster of life changes.  Leaving my job.  John’s surgery.  His new job.  Our changing routine and idea of normal.  Sometimes I’ve felt a little lost, looking for a purpose, a direction, something resembling motivation.

It’s funny that driving a stick shift again has been so seminal.  As though I’ve come back to myself.  As though the battle I fight every day, with the green smoothies and the bike riding and the water drinking and the vitamin taking and the …. blah blah blah … has come to mean something tangible.  I’ve taken little pieces of myself back since this disease took over.  Slowly, painfully, almost imperceptibly.

Fact.  I have MS.

Another fact.  It sucks.

Little victories ~ a new recipe that rocks, walking without a cane … once again driving manual …  they all matter.  They all count.  They are the things that keep me getting up, and blending spinach in a Vitamix, and sweating my face off in my garage on a stationary bike.

We named our new ride Memphis.  For our wedding song.  For our matching tattoos.  For the ancient capital of Egypt and for the city of Rock N Roll.

And she is beautiful.

the FDA

Today, the hubs and I journeyed into Philadelphia for my quarterly appointment with Dr. M. Since I’ve passed the two-year mark of being on Tysabri, they have to monitor my levels more closely, because I have the JC Virus. (Little bit of info: the drug Tysabri elevates your chance of getting PML -which can be a fatal brain infection- if you have levels of the JC virus.  Some people have JC, some don’t.  They aren’t really sure how people get it/don’t get it, but it doesn’t have any affect on you … unless of course, you have MS and want to take Tysabri, which was the strongest drug for MS on the market until Tuesday.  Anyway, in addition to checking the virus levels, organ function has to be tested and monitored, etc etc etc).

Essentially, it just means I get to have more scans and more bloodwork on a more regular basis.  Who could refuse that offer?!?

Last Tuesday, the FDA approved Ocrevus (I have to use the marketing name, because the actual drug name is very long and I can’t spell it properly).  Ocrevus is the first M.S. drug that has shown positive effects in progressive M.S. patients so for them, I am over the moon that it was approved. I have relapsing/remitting MS but mine was pretty aggressive when I was initially diagnosed.  Dr. M had suggested switching me over to it last year upon its approval by the FDA so John and I were interested in what he had to say today.

First, Dr. M was intimately involved in the clinical trials, so he’s pretty close to the effects of the drug as well as getting it approved.  Second, I am fairly certain that I drive Dr. M nuts.  In a good way.

The bottom line was, after talking for a while, Dr. M, John and I decided that for now, I am going to stay on Tysabri.  Listen folks, some of the possible side effects of Tysabri are pretty scary.  Dr. M prescribed it for me three times before I actually scheduled my first infusion.  He had to sit with me in an exam room for hours to convince me to try it.  And at the time, I could barely walk a city block without a cane.  My flares were coming regularly every four to six weeks.  In retrospect, I’m not totally sure why I hesitated.  But I can only really say that in retrospect.  Knowing now that I haven’t had the scary side affects.

I’ve said it once …  I’ve said it a million times.  M.S. is a tough effing disease.  It’s creepy and sneaky and a real bitch.  I hope that as data comes in about Ocrevus that it’s all good.  But I’m super glad that I’m staying on Tysabri for now.  It’s been my savior.  And yes, it’s scary.  But sometimes you have to walk through the fire to get to the good stuff on the other side.  That’s how I think about it.  That’s how I have to think about it.  If I fell into the what-ifs too much, I would drown myself.  Instead, I try to know as little about it as possible.  Here’s what I know ~ in the two years I’ve been on it, I have had a quality of life I thought was an impossibility.  I don’t have to travel with an assortment of needles anymore.  My disease is officially classified as ‘in remission.’  And I am so, so grateful.