Tag Archives: exercise

Depression

Sometimes in life, we find ourselves in a place we are not accustomed to. I’m not talking about a physical space, but rather the space which occupies our minds. For this glass-half-full girl, it is very difficult when my mind wanders off the usual sunny path I follow.

Sometimes the inside just doesn’t match the outside.

People with chronic illnesses are definitely more subject to suffering from depression than your average, healthy person, and many of us do take antidepressants to help us manage the weight of it all. But even with medications, there are times when depression can overtake us, and that’s ok. One of my MS sisters told me she “doesn’t live there but she visits on occasion.”  I love this analogy because it makes me feel like it’s ok, especially because I so strongly believe that as human beings, we need to experience the whole range of emotions in order to appreciate everything in our world.

For me, my frustration has been building since I broke my toes. I never thought that two little toes could affect my entire body the way they have. But it’s true. Those two toes have affected my balance and stability, as well as the alignment of my entire body. I am beyond grateful for my trainer and her patience that tempers my disappointment even though she can’t make me heal any more quickly than I am. I am desperate to get back to working out like an athlete, not an MS patient. Anyone who has ever been an athlete can surely relate to this, the feeling of losing despite the hard work being put forth.

My ankle is wrapped in kinesiology tape in hopes that my stability will improve.

This little setback came right on the heels of breast cancer. It seems like I didn’t deal with the emotions of a cancer diagnosis because I just put myself on autopilot to do what I needed to do, the way I always do… with a smile on my face. Now I have completed treatment,  but opted out of the prescribed protocol of endocrine therapy in favor of handling the continued treatment with a naturopathic oncologist. But I feel like I’m hanging in limbo, waiting for someone to either tell me that I am cancer free or that I have a recurrence of cancer. Plus, while I felt loved and supported through my entire cancer journey, now that it’s “over” (for the others in my life, but will never be for me), life goes on for everyone else while I feel like I am waiting for the other shoe to drop. And meanwhile, breast cancer precluded me from going on a new Disease Modifying Therapy for MS which I have had my eye on for years as it progressed through clinical trials all the way to approval. This was a huge blow and as I see more patients that are lucky enough to take it, I get more bummed out.

Then there are the relationships that have changed, for reasons I don’t understand but I am working hard to accept. I generally find comfort in my MS sisters but it seems we are all in a bit of a funk and dealing with our own issues so it has been way too long since we have been able to spend any quality time together. All of these things together have been adding to the weight I’m carrying that is diametrically opposed to who I am. I mean I cried for six hours the other day, which is so NOT me, especially considering that I often can’t cry even when I want to, thanks to the antidepressants that usually help maintain my emotional stability!

This little girl knew I was upset and she sat on top of me as I cried.

I recognize this place, as I (like my MS sister) do visit occasionally. While I am here, I take note of all of my feelings: the good, the bad, and the ugly, so that I can further appreciate all of the amazing things that I am blessed with when I leave. And I always leave, knowing full well that it’s ok to come back to visit, but it just isn’t where I live.

Gratitude

This week, my MS sisters and I were honored to participate in a video project intended to be shown at a very prestigious annual fundraiser for the MS Center where we are patients. Then to add to my excitement, I was asked to give a speech to the crowd, right after Daniel Rodriguez, the singing police officer who performed the national anthem on almost every major event here in the tri-state area in the wake of 9/11. The whole campus of the hospital is transformed into an elegant venue, as it becomes “an evening in the vineyard”, the biggest fundraiser of the year for our MS Center. Tickets are not cheap, so just being there is an honor in itself.

His voice blew me away!

For me, I am in my element when I am in front of an audience, using my skills honed through years of teaching, educating others. I love being able to share my personal struggles with others so that they can see that everyone struggles in so many different ways. I like seeing light bulbs go on in people’s minds as they make connections that they wouldn’t have made without having me standing in front of them as a visual. I like being able to speak on behalf of so many, especially when the audience is receptive (something I didn’t experience very often as a teacher!).

I’m very comfortable at the podium.

Remembering how despondent I was when I tearfully resigned my teaching position, makes me extra happy to be able to speak at events like this one. I have often been told that I’ll always be a teacher, except now the world is my classroom and my students are not held to the confines of a high school setting.

On the video screen at the entrance to the event.

Throughout the night, I had perfect strangers coming up to me and thanking me for talking to them, and telling me how inspired they were. They were the ones opening up their wallets to support the cause, yet they were quick to tell me how much they enjoyed listening to what I had to say. And all I could do was thank them right back, not only for their compliments but also for their generosity. I witnessed the kindness of strangers in the form of more handshakes and hugs than I could even begin to count. It’s nights like that when I am reminded of how positivity is contagious, and I love that. There was no pity or sadness, but rather celebration of good people doing good things for a community that desperately needs it. My heart literally could have burst out of my chest with gratitude.

My sisters.

As for me, I enjoyed a beautiful night filled with good food, good wine (and beer), and amazingly generous people. Plus I spent it with my MS sisters and my partner in crime, who rearranged his work schedule to be my date. At one point during the evening, I looked around just to take it all in so that I could lock it away in my memory for safe-keeping. At the end of the night I should have been exhausted but instead I found myself invigorated. I’m pretty sure that’s what people mean when they talk about being “high on life”.

All four one. Taken from our video.

With all that I have been through in 2017 with my breast cancer diagnosis and subsequent treatment, this night was exactly what I needed to kick-start a happier, healthier ending to what might have been the most difficult year I have ever had. No medication or treatment plan could have left me feeling better than I did when I left this event. I am so glad that I stopped to really feel the love because the memory will sustain me for longer than you could even imagine.

Just a sampling of the goodies. (photo credit: Carla)

(Also, sending a big shout out to my former student who served me some awesome craft beers. Thanks, John!)

Transformation

It’s that time of year again… the summer is drawing to a close, with everyone taking their last trips down the shore, enjoying the joys that summer always brings, while preparing excitedly for a brand new school year.

At this time every year, I like to reflect upon how insanely different my life (and my attitude) is since MS made the decision for me to retire on disability in May, 2014, after already being on sick leave for all but the first four weeks of the school year.

Back then, I couldn’t imagine my life without the career that had defined me in so many ways, and that I was so passionate about. I considered myself beyond lucky to have a job that I loved, because so many people are not as fortunate. People often told me that I was one of the few people they knew who actually liked her job. And I did. Every damn second of it.

Now that I am a few years removed from the feeling of such a devastating loss for me, I have clarity that I didn’t have before, and gratitude for everything, including the painful, emotional, difficult situation that started me on this part of my journey. I never dreamed that I could ever be in this beautiful place that I currently find myself in, happier than ever, which I could not have imagined when I was still working.

The other day, a Staples commercial came on TV advertising their usual 10 cent sale, and I was brought back to the days when I used to have lists of which retail establishment had things on sale that I needed for my classroom so that I could stock up for the year. I used to get so excited about these things, and now it hardly even phases me. I love that because it shows how much I have grown during the last couple of years.

I’m not saying that I got here without my share of growing pains, but I am saying that I understand it’s all a part of the process. Once I opened myself up to the possibilities of creating a new life, it changed my perception of everything I knew.

What I know now is that regardless of how much I loved my students (and still do!), my own family always needs to come first. I often lost sight of that as a teacher, but I don’t regret it because now I have all of these amazing young adults who make up such a big part of my life, and I love that. I love watching them venture out on their own, doing the adult thing, and spreading their wings to soar.

I also know that taking care of myself is vitally important. When I was working, I overlooked my own wellness in favor of my job and my students. Again, I don’t regret it because of the amount of love and gratitude they gave back to me (and still do), but I know that I am of no good use to anyone if I am not staying on top of my own health and wellness. This includes all the things I have incorporated into my post-teacher life: meditation, yoga, hardcore exercise, acupuncture, reiki, and healthy eating, all of which force me to put myself above all others so that I can stay strong for the long haul.

I remember the days when the weekends meant nothing more than time to grade, write lesson plans, and create dynamic presentations for my classes, leaving no time to actually enjoy spending time being fully present with my loved ones. Once again, I have no regrets about how I lived my career because it’s what the kids deserved and I don’t know how to do it any other way.

But now… now life is better than I ever thought possible. My circle of friends has changed, but in a good way because I am surrounded by other people who take nothing for granted and never waste an opportunity to laugh and smile because we are grateful for the life we are living, regardless of whether we chose it or not. I am more in love with my husband than ever because we have been given this incredible gift of time together. Hell, we even booked a vacation in September, something we have never, EVER done before. Some small part of me still feels like a rebel for doing it, but no matter how much time passes, I guess old habits do, indeed, die hard. But lucky for me, I have worked very hard to help these old habits go by the wayside.

The transformation from Mrs. Rankin to Rennie has not been an easy one, but it is ongoing and I’m getting better at it all the time. I have been transforming my entire world: physically, mentally, and spiritually for the last few years, and my progress has been slow but steady, and that’s ok. I know that as human beings, one of our biggest challenges is having the ability to change according to our life circumstances, good or bad. I’m not going to lie and say that the process has been an easy one, or that I don’t have my moments of weakness, but it does get easier with time and with the determination to live my very best life possible. Rather than crying about the fact that I am not going back to work this week, I am happily wishing my former colleagues the very best of luck as they begin the new school year. Life is, after all, what we make of it, and I am making mine everything I want it to be. So who wants to join me in a glass half full of lemonade?

The sunrise over the Raritan River by Rutgers University, a very symbolic photo at a place that will always hold an extra special place in my heart.

Forever Friend

I have always been of the mindset that I don’t need oodles and oodles of friends. I just need a few loyal friends with whom I have a deep connection. Some have come and gone through the years, as life happens. And it isn’t the quantity of friends that I hold dear, but the quality. Through all the ups and downs of life, I am blessed to have a very special “forever friend”, a name she coined for us back in the 1990’s.

Us… circa 1993

Meg and I went to high school together, but that was just the beginning of our friendship. We also worked together and we spent most of our waking hours together. We spent many hours driving around in her car (usually), car dancing, smoking cigarettes, or just hanging out. Beverly Hills 90210 was a given that we would watch together, and some of my most vivid memories center around those times. Of course, we got into our fair share of trouble together, but we were young and we were not tethered to much more than each other.

With my beautiful “niece”, Peyton.

We connected on so many levels, not the least of which was our shared socioeconomic background and the roles that our parents played at various times through the years. It seemed that no matter what I was going through, she could relate due to her experiences, and vice versa. Sometimes there were little gaps of time when we were both too busy adulting that we didn’t see each other as often, but when we did, we always fell right back into sync like no time had passed at all.

We survived our hormonal teens together, our crazy college years, and even the brutal years of trying to start our lives as adults. We have been there for each other through multiple divorces (in our respective families) and the inevitable drama that ensued, our family homes being sold, moves out on our own, medical issues, and about a gazillion other things. No matter where I am in my life I know that I have my forever friend who has loved me longer and supported me harder than just about anyone else in my life.

Even though life happens and we live farther away from each other than I would like, we still try to get together as often as possible. I absolutely love the way we have grown together even while not living 10 minutes from each other like back in the day. For example, we are both very fitness minded, and Meg has recently become involved in Spartan races. I find it more than coincidental that competing in a Spartan Sprint has been a goal of mine for quite some time, as a way of acknowledging my 15th MS diagnosiversary next year. I discovered that there is a race on the exact day (June 2, 2018), and when I mentioned it to Meg, without hesitation she signed up right along with me. And even though she will have already completed the “trifecta” by then (a sprint, a super, and a beast all in the same year), she is still willing to dial it back as I compete in my first. What’s more, she said it will be her best race ever. I can’t think of a more perfect way to acknowledge this date than with my lifetime friend who knew me before MS, before spinal fusion surgery, and before breast cancer, and who has been by my side through it all.

Proof. We are doing it together.

Megan is loving and kind, thoughtful and compassionate, selfless and sweet. I could never ask the universe for more in a person who I have leaned on so heavily for the better part of the last 30 years. She can still read me like a book, without even seeing my face, and friendships like ours don’t come along very often. In fact many people live an entire lifetime and never get to experience what it’s like to have someone like Meg to call their forever friend.

I remember vividly a session with my therapist long ago, when I first stopped working and was feeling abandoned by so many people. She told me that day that people come into your life for a reason, a season, or a lifetime. With Meg, there has never been a question as to where she fits for me, because she is the only person in my life who actually defies that saying. Megan came into my life for a reason, has endured the seasons with me, and will remain in my heart and soul for the rest of our lives.


(P.S. I know Meg is happy as can be right now because I have not included any incriminating photos and that we were young and free before the digital age!)

Bad Ass

This is definitely not a term I would use to describe myself. I mean I was the chubby kid who was bullied through elementary school and spent more time crying than laughing. My dad’s job moved us from rural New Hampshire to Bergen County, NJ (a very metropolitan area just outside of New York City) at this very crucial time of my childhood. I’m a lover, not a fighter, so I viewed the bullying as something I deserved, and cried over it in the privacy of my own bedroom. That chubby little kid never would have thought that people would look at her as a bad ass for simply living her life the only way she knows how.

Yet in the past few weeks, I have been called a bad ass on numerous occasions, which definitely makes me laugh. I mean I certainly don’t feel like a bad ass. I spend most of my time smiling, laughing, hugging, and laughing. Did I mention I spend a fair share of my time smiling and laughing? I’ve never even been in a fight where I actually threw a punch, though I certainly was pushed around plenty during those early days living in Northern NJ.

Me on the first day of school, slimmed down after a summer at camp.

I’m the rule girl. When I was working, I consistently enforced the rules in my classroom, and I’m afraid that the same attitude bled into my personal life as well. I am still bound to rules more than I’d like, but not working has made it easier for me to let certain rules slide. Still, in my eyes, that makes me boring, not bad ass. Not that I find this term negative… in fact I find it quite a compliment and also very empowering although I am not sure what qualifies me as bad ass.

I mean, I have dealt with Multiple Sclerosis quite openly for over 14 years now. I used my voice as a teacher to educate my students and colleagues, raising awareness (and money) for the cause, with my only motive being a sincere hope that the next generation can live in a world free of MS. I let them see the good, the bad, and the ugly, but I always approached it as my calling to show that overcoming adversity and rising to challenges in our paths simply make us stronger, more sympathetic, and more grateful individuals. Is that bad ass?

Here I am with my “core” MS Walkers (2010), who represented the over 450 members of our team.

I have accepted the brutal cycle that MS is… one step forward and two steps back. I have worked hard to keep my body moving, even through the times of limited mobility and function, because I am determined to stay strong. I have changed my life, my body, and how I look at exercise, fitness, and nutrition, because it takes on new meaning when it’s not about how you look, but rather it’s about how it makes you feel: strong and in control of the only things that you CAN control. Is that bad ass?

A few years ago, I endured a five hour spinal fusion and laminectomy surgery, not because I wanted to, but because I had to. This was not part what I had imagined my life would be, but I accepted it and embraced it as part of my journey because there was no choice. I worked hard to rehabilitate afterwards and get back to the place where I am most comfortable with my body. I kept moving rather than using it as an excuse to stay still because I needed to take control. Is that bad ass?

My spine and the hardware that holds it together, in all its glory!

The next obstacle in my path was a curve ball, to say the least: breast cancer. I approached it the same way I approach everything in my life. I did what I had to do, never questioning why it was happening to me. I did it with a smile on my face because of the love and support I felt in my heart. In the grand scheme of things, I knew it could have been worse, and it was a huge learning experience for me. I learned about myself and what I am capable of, as well as about the people I surround myself with. Some people live an entire lifetime without having the opportunity to see their own strength and capabilities, which is a true shame since most times we don’t know these things until we are tested to prove them. As difficult as it was, and will be for the next several years, I am grateful to have learned so much. Is that bad ass?

Post-op picture after my lumpectomy and lymph node biopsy: looking blue (literally) from the radioactive dye used to highlight the lymph nodes that were removed.

Finally, and most recently, a little tumble down a flight of stairs left me with some broken toes. Compared to all I have been through, this (although totally painful and extremely limiting to my mobility) is nothing. I laughed my way through the visit to the Urgent Care, the x-rays, the doctor’s attempt at humor (I’m not so young that I’m just growing bone overnight anymore and I must not have given enough in the collection basket that week, as this little accident happened on a Sunday), and even laughed at the silly, ugly boot which will be an extension of my body for another 4-6 weeks. It’s a small setback in the bigger picture of my life, and I just have to laugh at myself because I can do so many difficult things without consequence, but apparently walking down stairs is not one of them. Is that bad ass?

These are my toes after having been re-set by the orthopedist.

My conclusion is that “bad ass”, like beauty, is in the eye of the beholder. I never thought of myself as bad ass, I’m just living my best possible life. It’s funny that I would never label myself as a bad ass, but other people do. I’m fairly certain that the chubby girl who was so often bullied never would have thought that being pushed around by some assholes would seem so small in comparison to the real obstacles that I have had to face as an adult. And even though I don’t exactly see myself as a bad ass, I can guarantee that she sure would.

Yup. My shirt says “FC” and my socks say “bad ass”. If you don’t quite get the “FC” part, let’s just say that the “C” stands for cancer.

Tough Break

If I thought I was a hot mess before, with a fused spine, Multiple Sclerosis, breast cancer, and recent issues with my back, I had no idea it could/would get any worse. Especially since I’m a big believer in universal karma that gives us back what we put out there. I like to think I put my positivity out to the universe, and I do feel that I have always been taken care of as a result.

This week as I nurtured my back, icing it, stretching it, seeing my chiropractor and my acupuncturist, plus using my portable TENS machine at home, I started to finally feel like I was turning a corner. Then due to a 4 am wake-up call from my beloved Marty  and a subsequent fall down the stairs (which is not really unusual for me except I usually fall UP them) I ended up with two broken toes right at the joint where they meet the foot. I’m used to falling but usually I manage to do it without actually breaking any bones. I have had my share of scrapes, bumps, and bruises (mostly to my ego), but this is a new one for me. When I woke up a few hours later and discovered two of my toes pointing the wrong direction and bruising starting, I knew it couldn’t be good. But, it also could have been much worse.

6-8 weeks of this lovely shoe. Plus no yoga and only upper body workouts. This is a massive bummer for me. Particularly the no yoga part.

It’s true that for the next six-eight weeks, I will be very limited as far as physical activity goes: no yoga, only upper body exercises, and a lovely shoe that I must wear for the foreseeable future. Life with MS does this. I’m always working my butt off to take one step forward and then something silly (and often avoidable) happens, setting me back two steps. It’s an endless cycle.

The truth is that I am not invincible, contrary to how strong I feel at times. My MS family and I talk about this kind of thing a lot. We can do lots of difficult things because we are focused when we attempt them. But it’s the little things we do that we take for granted (like walking up or down stairs), and assume we can do them as easily as always, but that’s just not the case. Everything is harder when you have MS and even more so when you can’t feel your feet. Patience is easy to preach but hard to practice, specifically for someone like me, who likes to keep her body healthy and moving.

In a way, this fall happened for a reason. I tend to push myself too hard and seldom take time to rest. I often need reminders to slow down because when I’m feeling strong I just keep pushing. My body has been through a lot, and I have worked it hard even through cancer. I am 100% aware (now, if not before) that I need to give myself a break (no pun intended), not put so much pressure on myself, and be grateful for all the things that I can still do.

This is just another minor setback and I have no doubt that I will come back stronger than ever, both mentally and physically. A friend of mine shared this ancient Chinese Proverb with me, because he sensed I was feeling low: “Fall down seven times. Stand up eight.” It’s definitely the story of my life with MS, but I’m so glad he was quick to remind me. It’s what I do, and what all warriors do. As much as I may have wanted to throw my hands in the air and give up about a gazillion (or at least 40) times in the last 14 (+) years, I refuse. It’s not an option. I know I’ll rise, stronger, wiser, and hopefully with more self-love and patience when I get to the other side of this.

Plus, at age 45 I finally can say that I have broken not just one bone but two… at the same time!

Frustration

Ok. I admit I am not the most patient person, particularly when it comes to myself. I have never felt pressure to accomplish anything by anyone except me. That doesn’t mean I don’t feel it, in fact I feel that the pressure we put on ourselves is way worse than what comes from external sources such as parents, siblings, bosses, or even our own spouses.

This is not a new issue for me. I have been doing this my entire life. It’s a result of being a perfectionist. I’m not talking about simply being happy when you feel like you’ve done something perfectly. That’s a pleasant feeling for most. But for a true perfectionist, it’s so incredibly difficult to ever feel satisfied. It’s actually an illness just like depression and OCD. I got straight A’s in school, not because my parents insisted or rewarded that behavior with anything more than “Good job!”, but because I had to be perfect.

That behavior came along with me through my working years, especially as a teacher. I would have felt that I was doing a disservice to my kids if I didn’t do the job with the passion and dedication that I did. And that meant spending more hours at school than at home, and spending more time with my students and co-workers than with my own husband. Feeling satisfaction with my accomplishments that feel imperfect to me (as I compare myself to my past self) has not been an easy obstacle for me to overcome. It’s hard work and I work on it every single day.

So why am I bringing this up this week? Well, as I write this, I am heading into the third week of dealing with back spasms and soreness. For most people three weeks is not a lot of time. As a former teacher, I thrive on schedules. My “job” since retirement is staying strong and volunteering. I’m lucky enough to have an amazing trainer (the best!) who knows how to work with any and all medical conditions. But I have canceled my volunteer shifts for three weeks now, and I miss my furry friends!

Feeling unsettled and off my schedule is one of the hardest things for me to deal with. With all my follow-up appointments with my oncology team happening last week and this week, I have added in chiropractic care and acupuncture. And while I’m still working out with my trainer, I’m not able to go all out right now, and I miss that. I miss my at home workouts that now are amounting to little more than stretching and gentle yoga moves, and I’m missing my yoga classes. I guess that’s ok since so much of my time has been focused on getting over this hurdle with my back. I wouldn’t have time to do much more anyway considering how many appointments I’m running to.

In addition to feeling out of sorts because of the whole schedule thing, I’m frustrated. I’m stronger than I’ve been, maybe ever but I am learning that these things happen and I need to take a step back and allow myself the time to heal. This body of mine has been through a lot in recent years: Multiple Sclerosis, Spinal Fusion Surgery, and Breast Cancer just to name a few… When I look at things that way, it makes the current situation so much easier to tolerate. I am, after all, only human. And despite it all, my sippy cup of lemonade will always remain half full.

Unfortunately lately the time on my mat is spent with my foam roller, ice packs, and my portable TENS machine. 🙁

Mind over Matter

Me, introducing myself to new yoga instructors:

“Hi! I’m not a beginner but I am a hot mess. I recently had surgery and breast cancer treatment so my reach is limited on my left side. Also, my spine is fused so in some of the twisting poses, you’ll see me modify my movement. Oh yea, plus I have MS so I am heat intolerant, and balance is an issue so in some balance poses you’ll see me head to the wall. But I know my modifications, and I know my body so it’s likely that you won’t even notice.”

Her response (grinning at me, wide-eyed the whole time, probably thinking oh crap what the hell has walked in the door to this studio???):

“Ok! What’s your name?”

It’s the little things most people take for granted that I need to clarify every time I take a class with an instructor who doesn’t know me.  But my trainer takes the summer off from our yoga classes, which makes me happy because her family is around and she deserves vacation just like the rest of working world… or more so, if I’m being honest. But having to explain my unique circumstances to a complete stranger, often in front of a studio full of other strangers, is something I definitely do not enjoy, regardless of how sweetly the instructor reacts.

This is something new I have been practicing and it’s all core starting from this position…

…and then pushing up to this position, and repeat as many times as possible.

Quite frankly, I AM a hot mess… I didn’t lie about that part. I play it off like a joke, but it’s a sad truth. I am not down on myself about it, but I know that people look at me with the same deer in the headlights look that the instructor looked at me with (even though she grinned at me the whole time). The point is that I know how to manage the cards I have been dealt, no matter how crappy I feel at times. That’s why I embrace every single day I’m given, even the bad ones.

This weekend my back, as it sometimes does, was acting obnoxiously and I was suffering from brutally intense spasms. It felt a little wonky on Friday, but after stretching it and rolling it with my muscle massager, it seemed ok. But on Saturday morning, before I even got out of bed, I was emotional over some personal stuff, and the spasms were excruciating. For all the work I do on myself, both physically as well mentally, I was so mad at myself for letting my emotions wreak such havoc on my physical body, which is stronger than it has been, probably ever.

This little tool is a lifesaver for sore muscles!

I do believe that there is a strong body/mind connection, which is one of the reasons I was so upset about my back. Yes, I do the physical exercise that is required to stay as strong as I can. But the mental exercise is even harder. I journal twice a day, every day. This allows me to acknowledge my gratitude, understand my weaknesses, and even praise my own “wins”. I’ve been seeing the same therapist for years now, and my work with her is far from done, although I am improving all the time. I meditate faithfully, allowing my body and mind to both be still as I let go of all the unnecessary crap that weighs me down. I read (well listen to, actually) self-help books that teach me how to love myself and to be proud of who I am. I even see a Reiki Master in an attempt to keep my chakras open, allowing my energy to flow freely and release any toxins that might be gumming up the works. Yet still, there are moments when my mind actually gets in the way of my physical progress.

At these moments, I remind myself that I am human, and more importantly, that I simply can’t control every single aspect of my life no matter how hard I try, or how badly I want to. Although this physical manifestation of something much deeper was more painful than I even thought possible, it was a reminder to me of so many things: slow down, listen to my body, nurture my spirit, and allow my emotions to come out rather than bottle them up. This is quite an important lesson for every single one of us, since the mind can do such powerful things to our bodies.

I may be a hot mess, but I don’t let that keep me from living a beautifully happy life despite it all. In fact, I am grateful for each part of me, even the icky parts, because that is how I have learned to live my life out loud, for the entire world to see. It’s not an act that I put on, but rather the authentic way I choose to live and show others that true happiness is always right in front of you. You just need to be open to seeing it. And once you do, it is amazing how differently you will see yourself and your place in the world.

My place in the world will always be right next to this guy right here. #teamrankin

Ocrevus

So I’m not your typical patient. I don’t blindly do what doctors recommend unless I have spent time learning and researching. Hence, my recent decision (which I still stand firm on) to not take the recommended Tamoxifen as part of the “protocol” for breast cancer treatment. I have learned to be a professional patient through my years of experience living with Multiple Sclerosis.

I happen to have a unique relationship with my neurologist, in that we discuss in detail the treatment options that are being created and tested in clinical trials. We always have. I appreciate that he is always willing to answer my questions honestly, and he fully supported my decision to participate in the clinical trial for what later became known in the MS community as Gilenya. He understands that I am proactive, and that I can intelligently decipher data to reflect the truth, not just the numbers. It’s a relationship we have built over the last almost 13 of my 14 years living with MS, and I trust this man implicitly as the “captain” of my healthcare team.

While my MRIs have been “stable”, this only means that the changes are not yet detectable, and I have had two major relapses in the last four years, one of which was most definitely a brain stem occurrence, which is generally difficult to read on MRI anyway. I always use the same facility for my MRIs, for the sake of comparison, but they don’t use the most powerful machines available. But that part doesn’t even matter because regardless of what the MRI says, clinically, (while not horrible) I am not doing as well as I was several years ago, despite me working harder and harder on the things I can do to help myself.

For years now, I have been watching a new MS treatment (Ocrevus) through development and clinical trials. I do things like set up google alerts so that any time the drug is mentioned, I get a link to the article sent to me. I then read and research more on Google Scholar. I combine data with testimonials, and of course discuss these things with my neurologist every chance I can get. On paper, it seemed like this was going to be a perfect fit for me. The efficacy resulted in NEDA (no evidence of disease activity, something we all strive for since there is no cure) with a very impressive safety profile. Initially, it was due to be approved in December of 2016, but due to “marketing issues”, the date was pushed to March of 2017.

A lot of things happened in that time. Like breast cancer. When I found out I didn’t need chemotherapy and that radiation would do the trick, I was so incredibly relieved, not just for the obvious reasons, but also for the fact that chemo would have excluded me as a candidate for Ocrevus. Additionally, however, it was discovered that in a trial comparing Ocrevus to an existing MS treatment (Rebif), there were six cases of breast cancer in the Ocrevus arm, and none in the Rebif arm. As a result, the packaging insert contains a warning about possible malignancies that could not be explained in the trial. The insert states that women should be screened regularly for breast cancer, and I thought, “Well damn! No one is going to be screened more regularly than I am from here on out,” convinced that I was still a candidate.

Last week I had the appointment that my neurologist and I had carefully scheduled, hoping that by the date chosen, all the red tape would be sorted out, both by insurance companies as well as by the hospital’s review board, which it has been. But when he walked in the room, I knew from his face that the conversation I had feared was about to happen.  He looked at me and he told me that we were going to have a very difficult conversation, and one he had been dreading for some time. The bottom line is that my neurologist is not comfortable putting me on a treatment that caused malignancies when I have just finished treatment for breast cancer. This was a short study, just two years, and that’s a pretty high number of breast cancer diagnoses in a short amount of time. He also admittedly said that because the study was short, he fears longer term effects which are not yet available until extension trials produce more data. He said he would do it but he would worry about me all the time. And to be perfectly honest, if this guy, who has had no motive other than my health for 13 years now, is not comfortable, then neither am I. That’s how much I respect the relationship we have built, even though I was (and still am) utterly devastated. My dreams of NEDA came crashing down, and I found myself crying buckets of tears of disappointment.

Instead of dwelling on that, because he’s not all that comfortable with tears, he told me about another treatment in development that he likes very much, probably because he knew I’d write it down and do the same due diligence I always have. When he left the room, he acknowledged that my reaction was better than he had anticipated, and I told him that’s great, but I’m just going to sit in here and cry a little more before I come out of the exam room. I was mostly joking but I did my share of shedding tears. I had placed all of my energy on this and for a brief minute, very out of character for me, asked why I had to get damn breast cancer. But only for a minute because that’s not me. I moved on. Reality is what it is, and I am grateful for stable MRIs even if clinically I’m not as stable as the MRI reads. When I finally emerged from the exam room, the nurses started in, joking with my neuro saying things like, “Why did you make Rennie cry?”. It’s just one of the many reasons why this is my chosen team to manage my illness.

When I left the MS Center, I felt lonely, afraid, and pissed off that breast cancer robbed me of this dream I have been chasing for so long. At that moment, it didn’t matter how many people in my life make me complete and happy every single day. I chose to give myself a very brief pity party, which was pretty easy since Bruce was away, and my friends weren’t around. I never overstay my welcome at these parties, but I’d be lying if I said I never threw them. Being human means that we experience all of our emotions, good, bad, and ugly. And believe me, I am an ugly cryer! So I did a little wallowing, and I came out the other side with more perspective and more certainty that the only predictable part about MS is its crazy unpredictability.

Although I am not a candidate for Ocrevus (sadly), I applaud the fact other patients are benefitting from it, because our options as MS patients are so very limited. In fact, this is the first treatment that is approved to treat progressive forms of Multiple Sclerosis, which definitely makes me happy when I look at the big picture. So instead of focusing on myself, I simply turned my focus to the greater good of it all. Scientists are making great strides all the time, and while there is no cure, there are new treatments in development all the time, and maybe the next one will work for me.

In the meantime, I remain committed to my wellness, both inside and outside. I nourish my spirit and my soul as well as my body, because that’s the one thing that I have control over on this crazy journey. Like I have said many times in the past, this is not how I envisioned my journey, but it’s mine to walk, and I choose to do so with a smile on my face, love in my heart, and a glass of lemonade, half full (of course), in my hand (even if it is a “sippy cup”).

Whether it’s hot coffee…

…or a cool beverage, I always drink from a “sippy cup”. I drop things way to easily and I trip over nothing, so this is our accommodation for me not spilling everything everywhere.

#LifeWithMS

Wednesday, May 31, 2017 is World MS Day. On this day more than any other day of the year, I stand in solidarity with my MS brothers and sisters, each of us doing something in our own individual ways to help raise awareness of this often invisible, consequently overlooked, incurable illness. This has become a powerful movement in recent years, and the theme this year is #LifeWithMS. In honor of this theme, I am sharing my thoughts on the matter, as always,  hoping to impact as many people as possible, whether they suffer from MS, have loved ones who do, or who don’t know anything about #LifeWithMS.
First of all, Multiple Sclerosis does not discriminate. Not by race, ethnicity, gender, socioeconomic status, sexual orientation, or otherwise. No one is immune or exempt from the possibility. Although most people are diagnosed between ages 20 and 40, there are no rules and it can happen way earlier or way later. Additionally, having MS does not preclude anyone from being diagnosed with other serious conditions… a fact I always knew but learned first hand having recently completed treatment for breast cancer.

My #LifeWithMS has taught me so much about myself, my friends and family, and the world in general. Because the vast majority of my symptoms are invisible, I find that I am treated very differently than the MS patient who relies upon a walker or a scooter because those are devices the whole world can see. My experience with my sisters and brothers who rely on assistive devices for ambulation is that generally other people are kind and considerate, and amazingly helpful because they can see that there is something wrong. I am generally not afforded the same consideration because looking at me, most people wouldn’t know I have anything wrong with me at all (but my therapist knows the truth!). In fact, I often get the evil eye when I pull into a handicap parking spot, and have even been questioned about it by perfect strangers. I have been dealing with this for a long time, so I no longer feel the need to engage with others or defend the fact that I am, indeed, disabled. The office of social security, the motor vehicle commission, my doctors, and the state of NJ all acknowledge it, and all these years later I don’t really give a crap if a random busy body watching me park my car does or not because I’m too busy trying to live my very best #LifeWithMS.

My point is that just because you don’t see something, it doesn’t mean that it isn’t there. I mean we can’t see gravity, but I assure you it’s there, and I don’t think anyone would argue that. So am I supposed to present an enumerated list of my symptoms to all who meet me so that they know that I suffer on a daily basis? And I do suffer from many difficult to manage symptoms, yet I always hear the dreaded “but you look so good!” My internal response is always the same: Damn… I am a great actress! (or else I think and you don’t look dumb, but you are!)

#LifeWithMS includes managing crippling fatigue, deep neuromuscular pain, bladder issues, “painsomnia” (self explanatory I hope), neuropathy (numbness, tingling, weakness, lack of coordination) on my entire left side plus my right foot, insatiable neuropathic itching fits that have left me raw and scarred all over my body, constant vertigo, muscle spasms in my legs and intercostal muscles often known as the “MS Hug”, and the list goes on and on. But when you see me out you won’t know it, because I am an actress and an optimist, and if you tell me I look great, I’ll gladly take the compliment, secretly so grateful that you don’t see me on the worst days when I can’t even remove myself from the couch.

Staying strong is my MO.

My #LifeWithMS revolves around taking care of me, and I am fortunate that I am in a position to do so. I exercise faithfully, eat well (but not without my cheat days), and I meditate. The only thing predictable about MS is its unpredictability and as such, the things I do are the only things that are within my control, and staying strong (both physically and mentally) is my only weapon.

Yup. My shirt says “FC” and my socks say “bad ass”. If you don’t quite get the “FC” part, let’s just say that the “C” stands for cancer.

Of course, I can’t talk about my #LifeWithMS without talking about the incredible support system that surrounds me. I have a devoted partner, a loving MS family, a handful of beautiful friends who have stayed the course with me, and some very special family members as well. Without all of these awesome members of my team, I would be a very different person.

The most important member of my support team is this guy right here… he is my everything.

The take-away for today, the thing I most want to emphasize is that #LifeWithMS is no less worth living than life without it. I still smile endlessly, laugh without abandon, and love with all my heart. But more importantly, I am infinitely more grateful for who I am and all that I have. MS or not, life is what you make of it, and as for me, I prefer to sip lemonade over sucking lemons. Don’t you?

My MS sisters. They are absolutely the best friends I could ever ask for.