Tag Archives: diagnosis

Vegas

Every year, my husband takes a guys’ trip to Las Vegas. For 13 years, without fail, this has been a ritual for Bruce and his friends. They aren’t really gamblers, but they love the sports book, so going in October allows them to bet on baseball, football, and hockey. Apparently it’s the manly man’s dream.

Back in the day, the wives/girlfriends took the opportunity for some female bonding time, which is equally as fun but definitely more tame. As the years have moved along, fewer guys make the trip, and the girls no longer have “girl time” because they have had kids, moved, or both.

This year in particular, the time leading up to the trip (just a week and a half before they were due to leave) was marred by the brutal events that left the city, and our country in shock and grief. But not going was not an option because as we all know, life must go on regardless of tragic events, because otherwise we let the perpetrators of such disgusting acts of senseless violence win.

Bruce sent me this picture from the makeshift memorial that has been established at the site of the massacre.

While I am happy that Bru takes his annual guy getaway, I hate everything else about him being gone. I realize how lucky I am that he takes care of so much around the house so I don’t have to. In addition to taking care of a house with entirely too many steps, I have the dogs to worry about as well. Bruce and I are a team and he picks up my slack so frequently that I often take it for granted, which is something I am reminded of every time he goes away.

Now as our dogs are aging, they are much more needy, and they require more care. When Bru is home we make a perfect team with how we care for them, but being alone is a whole different world.  In addition to them needing more care, so do I! This year I had a dizzy day, which I haven’t had in quite some time. I woke up and was stumbling all over the place, tripping over my feet, and I felt like the house was spinning around me. While dealing with that, I had to carry dogs inside and out (about 100 times thanks to Marty), pick up food, put down food, move the food while Marty decided where he would like to dine, and administer the medications all while barely being able to even stand up. Then to top it all off, I had to clean up dog vomit… from the dog who has only puked once before in all the time he has been with us. This gave a whole new meaning to the expression “when it rains it pours”.

Special needs dog does not even describe this guy. The amount of care he requires can be overwhelming to say the least.

Luckily I have an emergency medication that is supposed to help me on days like this. I’m not sure it helped as much as it allowed me to doze, which is extremely uncommon for me. I don’t even sleep at night, and napping is something that never happens for me. Luckily, the dogs did allow me some time to rest, and I woke up the next day feeling less dizzy but just exhausted.

It didn’t perform any miracles, but i think it might have helped just a little bit.

Even though it’s taxing, I still support Bru any time he wants to do the guy thing, and I’m pretty sure he’d say the same about me.  The important thing is that we miss each other like crazy while he is away, and it always feels so good to have him home.  And I get a dose of reality about not taking even the seemingly tiniest things for granted because it’s so blatant while I am alone. I’m reminded of what a great team we are, and if nothing else, I know for sure that home just isn’t home without my partner.

Plus, it sure doesn’t hurt when he wins big and brings me extra presents! 🙂

Enough

Recently I was introduced to a book that changed my life. First I listened to the audio version, which is generally what I do. But I found the book so powerful on so many levels that I actually bought it. Now it’s full of notes and highlights because I have read it over and over, and no matter where I open it to, I find something useful. It’s called “I Heart Me (The Science of Self-Love)” by David Hamilton, PhD.

I am enough!

(Disclaimer: I have nothing to do with the publishing or creation of this book, nor do I receive anything for endorsing it!)

Basically, the book explains that self worth is about biology and is in our genes, yet somehow we lose sight of it as we navigate our way through life. We seek validation from others, but our worth is within us when we reprogram our brains to acknowledge it.  In essence, the book helps us understand ourselves, learning to be truly authentic and happy, with the goal being the ability to say “I am enough” and truly mean it.

The phrase “I am enough” has become part of my daily intentions (or mantra). Every single day when I write my intentions in my journal, I start off with that phrase, even if I didn’t mean it when I first started doing it. But part of reprogramming our brains, according to Dr. Hamilton, includes repetition of this phrase because eventually we become fully aware of it and we believe it.

Thinking about what my blog would be this week, my MS sister (who actually introduced me to this book) suggested talking about all the reasons that make me feel that “I am enough” even though people with chronic illnesses often can’t recognize these things in themselves for a multitude of reasons.

For example, many of us don’t work because we are on permanent disability. For someone who identified herself first and foremost as a teacher, when I stopped working it was hard to see that “I am enough” when the thing that most defined me was no longer a part of my life. But my legacy remains and because I am still surrounded by so many young adults who have been a part of my life since they were just teenagers, they remind me that I am enough.

This guy right here is just one of the many former students who remain constants in my life. #blessed

This book also taught me that I don’t need people to like me in order to be enough. I spent so many years putting other people before myself and I thought that doing more for them meant they would like me more, and therefore I would be validated. The truth is that validation comes from within and while I love doing for others, I don’t need to in order to be enough. Narrowing my circle of friends to those who truly love and appreciate me is so much more empowering, and no matter how much or how little I give them, I know that I am enough.

These friends never make me feel like I am not enough. #mssisters

As a perfectionist, I was never happy unless I achieved perfection.  This happened in all aspects of my life. Reading this book made me see that I need not be perfect in order to be enough. I learned that only I could see what I perceived as inadequacies and faults because I was the only one holding the microscope up to myself. As promised in this book, moving forward with self-love made the perfectionism fade. I’m not saying I have overcome it entirely but I’m a whole lot better than I used to be.

Perhaps one of the most important lessons that Dr. Hamilton taught me in this book is that I don’t have to look a certain way or be a certain size in order to be enough. Body image has long been an issue for me, and learning to love my body no matter what size or shape, without shame, comes slowly. I had to learn to think outside the stereotype I felt I needed to live up to, and instead focus on the many things I do to keep myself strong. Opinions are subjective and I might not fit anyone else’s ideal, but I am 100% me. Comparing to anyone but myself resulted in an unhealthy feeling that lead to never feeling I was enough, and I am.

It doesn’t matter what i look like. Whether heavier or thinner, I am loved. Sure, I like being thinner like I am now, but I face a lot of obstacles, and regardless of my size I am enough.

Allowing my vulnerability to show has also given me great strength. There is something very liberating about baring one’s soul, and other people appreciate it even if they can’t quite identify it. Vulnerability includes being honest and authentic with ourselves and others, and only then can a true connection be made. Even though we could get hurt in the process, it’s worth it because we learn that even though we are raw and sometimes flawed, we are still enough.

But by far the most valuable lesson this book taught me is that I need to be as compassionate, forgiving, and understanding with myself as I am with others in my life. We are always quick to comfort others when they feel they have made a mistake, but we don’t offer ourselves the same courtesy. I deserve compassion. I deserve forgiveness. I deserve understanding. I am human, too. And I am enough.

Bru always always assures me that I am enough.

This book was no ordinary book for me. What I learned is that it’s very liberating to go through the process of accepting that I am enough. In every way. If you are ready to learn how to accept yourself as enough, the minutia of daily life that normally makes you feel inferior, no longer weighs you down. The progress I have made has not been easy nor has it come quickly. But every day I am making steps to be the truly happy and authentic me that is just waiting to make her appearance. I am not sure the version of me that first listened to this book would even recognize me now, and I’m not even done yet. In the meantime, I can rest comfortably knowing that I am, indeed, enough.

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!)

As Is

Some things are so hard to explain to others when you have a chronic condition. It seems like no matter how many ways I try to describe what it’s like, it just doesn’t matter, and because others don’t understand it’s all the more frustrating for me, and thus I feel pressure when I shouldn’t.

I couldn’t ask for a better big sister and bro-in-law.

I have simplified my life because I have had to, not because I wanted to. Things I used to do with no problem have become exponentially harder as the years pass and my condition throws more challenges my way. Gone are the days when I could plan to do anything I wanted: travel to Florida to visit family, zip in and out of the city on the train, spend hours shopping, or even just have firm plans for both days on any given weekend. But alas, those are all parts of my past because I am no longer as capable.

My beautiful MS sisters showing their support by wearing my warrior shirt.

People look at me and think I look fine.  But they don’t know how hard everything is for me. When we have firm plans (such as this week when we are attending a concert), I know that I need take time to prepare, both mentally and physically. I will limit my activities so that I am well-rested and in the right mindset to completely enjoy what is planned to the best of my ability. It’s not that I don’t want to be social and do things, but everything is so hard. Even things like taking a shower and getting myself to look presentable are difficult for me for so many reasons, not least of which is what I call “painsomnia”, a condition that affects me every single night. I challenge even the healthiest of individuals to live a “normal” life with serious sleep deprivation.

This girl gets me on a level that most of my friends can even begin to understand. Notice she is wearing my warrior shirt? Love her.

Often times when we have plans, I say that I am a “game day decision” because I never know how I’m going to feel. And if I should happen to miss an event, I am accused of being purposely “absent” because I do attend other events. Unfortunately, MS does not care what things happen on which days, and frankly, MS simply does not play nice! I don’t use it to “get out” of things, but I do realize how it limits me. I know which scenarios are doable for me, and which are not.

This guy showed up when others ran away.He is my brother from another mother and I am so grateful for his friendship.

This has not been an easy lesson to learn and I have often struggled with it through the years. I walk a fine line between happily doing the things I can and want to do, and being sad and frustrated because I know that I can’t do certain things that I used to love. Being who I am, I have learned to look at everything in my life through the glass half full lens.

Sisters from other misters.

Simply put, that means that I am grateful to have had so many wonderful experiences even if I can’t still enjoy them. Instead of dwelling on what I can no longer do, I focus on what I can do. I no longer care what anyone else thinks or says about me because I have so many awesome people who accept me exactly as I am now, not least of whom is my partner in crime, Bruce, who has never wavered. Skinny or fat, makeup or none, blonde or pink, mobile or immobile, it just doesn’t matter.

The. Best. Ever.

Now I only surround myself with people like Bruce who never make me feel anything but whole… a human being not defined by my diagnoses but rather by my character. Never do I have to explain “why” because the people that matter already know the answer, and they love me anyway. I am beyond justifying it or defending myself, and with my peeps I never have to. Even though my inner circle may have gotten smaller through the trials and tribulations of life, it offers me more strength, support, and love than I ever thought possible.

Never any shortage of laughter (or love) with my guy…

Thank you to my inner circle for keeping me whole, grounded, and genuinely happy. I don’t know how I got so lucky, but it doesn’t really matter I guess. I’ll just continue to thank the universe every damn day, not for giving me MS, but for giving me all the gifts (in the form of lessons learned and an extra special MS family) that I have been given as a result.

Relative

I hate it when people say to me that they feel bad complaining about things to me because “I deal with so much”. On the one hand it is kind of sweet of them to say that, but on the other hand, I’m still a human being and friend, and my problems don’t preclude me from being able to listen to others and offer my advice.

The truth of the matter is that everything, EVERYTHING is relative. I understand that on the surface people might think that their issues are unimportant but, as I always say, the only person you can compare yourself to is you. And that goes for every aspect of life. When one of my MS friends tells me that her knee actually started bending (after lots of hard work) when it hadn’t bent like that in years, I get so excited because relative to her past, it is huge. She may as well have run a marathon, as far as I’m concerned. I never compare anyone to me, nor do I compare myself to others. It’s all about personal progress, and the same goes for personal hardships.

I realize I have had my share of personal hardships, but I don’t look at things that way. I am of the mindset that my lot in life is exactly that: mine. It’s unfair to compare myself to anyone else, and if I did I would be a completely different person than I am today.

The fact of the matter is that I don’t look at other people and compare them to me, questioning why I have been dealt the hand I have while others have a seemingly “better” hand. Problems are problems, and like assholes, we all have them. Mine are no more important than anyone else’s, and in fact I’d venture to say that mine are easier because I’ve had to deal with so many through the years, and I have gotten pretty good at handling them in my usual glass-half-full way.

So it’s not like I’m saying I want more obstacles to overcome, but I never thought I’d appreciate them the way I do, because each one makes me a better version of me. The strength I’ve derived from all I’ve been through makes me a kinder, more sensitive, more understanding human being, and overcoming the bumps along the way is perhaps the most empowering feeling I have ever had.

The challenging parts of life are not easy, but the way we respond to them molds us into who we are. It’s unfortunate that so many people can’t see the beauty that awaits when you overcome those difficult times because it is powerful and we all deserve to experience that feeling. Plus giving up, for me, is simply not an option. We get to choose our fate (in a way) by how we handle our life circumstances. Why would anyone not choose empowerment over the alternative?

Lucky to have this guy who supports me through it all, which makes everything just a little easier.

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.

Diagnosiversary

In preparation for my blog this week, I decided to read what I had written about my diagnosiversary last year and the year before, because I just can’t let June 2 slip by without acknowledging it. I read through the entry, and I realized that on this, the 14th anniversary of my diagnosis of Multiple Sclerosis, I would have written the same exact thing I shared last year (which I shared from the year before) on the topic. The feelings I experienced on that day, and during the weeks and months that followed, are still as raw and as powerful as they were 14 years ago. It doesn’t matter how much time passes, telling the story immediately brings me back to that moment in time, so here’s what I have shared in years past. Nothing has changed about that day, except year 14 has brought many more challenges (like breast cancer… an entirely different diagnosiversary!), but it has also brought many more rewards for which I am grateful every single day. 


This is the sign that marked my 14th radiation treatment, and I think it is a perfect representation of how I feel 14 years into my journey with MS.


June 2 is a very special day for me. It’s a random day, and it probably means nothing to anyone but me (and possibly my husband). It’s an anniversary that does not celebrate a milestone or an accomplishment, but June 2, 2003 is a date that I will never forget. On that day, I was given a diagnosis that undoubtedly has changed the course of my life.


Every year on June 2, I am brought back to that day, now [fourteen] years ago. I relive the details of the day moment by moment. I remember what I ate for breakfast (oatmeal), and I remember what I was wearing (white and blue plaid capri pants, a blue button down shirt, and white and blue sneakers). I remember stopping at Dunkin Donuts for a large iced coffee (black) on the way to school. I remember the panic attacks. All. Day. Long. I remember that I had permission to leave after my last teaching period so that I could get to my appointment on time. I remember that my appointment was at 2:30, and I remember that Bruce took a half a day so that he could go with me.


So we got in the car, not talking to each other at all. On the way to the neurologist appointment, we stopped at the radiology office to pick up a copy of the MRI results, just in case the doctor hadn’t yet received them. They kindly folded the paper and put it inside an envelope. In the elevator up to the doctor’s office, Bruce asked me if I was going to open the envelope. Without hesitation I said no way. I knew I wouldn’t understand what was written there, and why not just have these last moments together before the inevitable?


We sat in the doctor’s office, staring at each other, waiting for for him to deliver the news. We didn’t talk. I was too busy having one panic attack after another to even attempt a conversation. After what seemed like an eternity, we finally heard his footsteps approaching. We heard him pause outside the door, and we heard him pull my chart out of the bin outside the room. Then, to our complete and utter shock, we heard him let out a huge sigh, before knocking once and entering the room.


The doctor walked in, greeted us, and told us that I have Multiple Sclerosis. From that moment on, it was as if I was watching someone else’s life unfold. I only heard bits and pieces because my mind began racing. To be fair, I was not yet educated on MS, but at that moment, it felt like I was given a death sentence. We know now that MS is fatal in only the rarest, most severe of cases, yet there was a part of me that did, indeed, die that day. The road ahead of me required a complicated detour that I was not sure I could even navigate.


We left the doctor’s office in a total daze. Suddenly we were occupying space in a world that was completely different for us, yet for everyone else it was unchanged. In this drastically different world, what did we do? We went to Target. I guess we were searching for some sense of normalcy in this new, unknown world of ours. We sat in the car afterwards and called our families to share the news. It wasn’t exactly the kind of news I looked forward to delivering, but at least I finally had an answer. After months of appointments, X-rays, MRIs, blood work, evoked potentials, and cognitive and neurological tests, I was done. It’s not what I wanted or expected, but it was something. The phone calls I made on June 2, 2003 were some of the most difficult conversations I have ever had in my entire life.


Following my diagnosis, Bruce and I holed up at home, and didn’t speak to many people other than each other. Some friends called to offer support, and others dropped off the face of the earth. All the relationships in my life were tested, and certainly the dynamic within them shifted. I learned a lot about my friends, and mourned the loss of many who did not know how to deal with my diagnosis. Sadly, this happens with every relapse, but [14] years later, my coping mechanism for that kind of loss has been fine-tuned, and I have built a support system that holds up.


On this day every year, I take inventory of my life since diagnosis. It has not been an easy journey, but it has been amazingly rewarding in so many ways. Since my diagnosis, I have learned that I am stronger than I ever imagined I could be. Everyone has an inner strength, but not everyone realizes it because you don’t summon that strength until you need it. I have discovered my voice to educate and to raise awareness, and my passion for patient advocacy. These are integral parts of who I am, and without MS I don’t know who I’d be right now. One thing I know for sure is that on my diagnosiversary, I always give thanks to the powers that be for all of the parts of me that MS has made better, and for all the things I am still capable of doing despite the MonSter.


For [14] years I have acknowledged the importance of my diagnosiversary, and this year is no different. I’m still grateful for the many gifts I’ve been given, and even though my journey has not always been an easy one, I know that every bump in the road makes me a stronger, better version of myself. I don’t celebrate the anniversary that falls on this day. I celebrate all the things that I have managed to accomplish, all the things I can do, and all the things I am, MS and all.

#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.