July, 2017
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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!
brian o’connor
During my last year of college I lived in a row of three houses filled with theatre majors. It was a fun block and group of people. I’m not in touch with many of them today (other than Facebook, but we’re the generation who grew up without Facebook, so a lot of us function without it … which means not a lot of online living). But through the years, oddly enough, I have stayed in touch with my next door neighbor and friend Matthew. And to some extent, through Matthew, his brother Brennen. Matthew is a successful actor in New York City and Brennen is a successful architect back in Pittsburgh (where they are from).
But when I think of Matthew and Brennen, the first thing I think about is Brennen’s Laser (dark blue, and always sitting in the common driveway, the hood popped up and Brennen’s upper torso leaning over the engine -for a purpose none of us were ever too interested in).
It’s hard, in a few words, to describe that year I lived on North Atherton surrounded by those boys, but I have memories for days. Brennen and the Laser, playing video games (the only time in my life, and only for a few months before Brennen took our Playstation away, pointing out that we’d completely stopped doing anything else). Writing music, listening to music, sitting and talking for hours at a time. It was a magical year.
It was also the year that I was first exposed to “The Fast & the Furious.” And, for reasons I still cannot pinpoint, I fell in love with it.
When John and I started dating, we watched the fourth movie on a bootleg internet site – the coming back of Vin Diesel and Brian O’Connor after the (in my opinion) blasphemy of ‘Tokyo Drift.’ We saw ‘Fast Five’ in the theatre on opening weekend. And the sixth.
And then, like a shock wave, Paul Walker died.
I cannot explain why it affected me the way it did. I was absolutely devastated. I watched all my DVDs for days, watched Brian O’Connor wearing his chucks and vans. Smiled with tears in my eyes when he spoke. Tweeted too many times with the hashtag “Remember the Buster.” I wore chucks for a week leading up to the release of F&F 7, and was there for a matinée showing on its opening day. I don’t think I paid very much attention to the movie ~ I was transfixed with watching Paul Walker on-screen. And I still cry every time I see the end sequence of that movie. Big, hot, emotional tears.
So when “The Fate of the Furious” was released, I felt a little torn about seeing it. Hubs was hoping that with the departure of Brian O’Connor (Paul Walker’s character in the movies), I would move on from my “Fast and Furious” obsession. We didn’t see it in the theatre. I listened to, but stayed quiet, about all the reviews. Was I ready to see a new F&F movie without Brian O’Connor? I didn’t know.
But I pre-ordered it on iTunes because deep down, I couldn’t turn my back on this series of movies that have grown more and more absurd as their popularity has grown. I love them too much. I still think about Paul Walker asking for his tuna sandwich, no crust and am magnetically drawn to the films. So John and I sat down to watch it this week.
To me, there was a gaping hole where Brian O’Connor should have been. But, I also considered that life goes on for all of us when we lose someone we love. Life continues, and the hole is there and the memories are there and the emptiness drums in the background, the heartbeat of the person we’ve lost.
It was better than I thought it would be. It felt like there was a story again – something that I’d felt was missing from the sixth and seventh installments. My breath caught in my throat when Roman (Tyrese Gibson) and Letty (Michelle Rodriguez) mentioned Brian in the middle of the movie. And I cried at the end, knowing but waiting for confirmation of what I’d guessed.
I don’t know why I love the movies. Life, maybe? Good memories? And I certainly can’t explain why I was so ripped apart by an actor’s death — a person I didn’t even know. And yet, I was. I remain staunchly loyal to Brian O’Connor. The Buster. Tuna, no Crust.
And I’ll keep watching the Fast & Furious movies until they stop being made. Because I can’t give up now.
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
D5 Creation