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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.

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.

Evolution

There is no rhyme or reason to what I blog about. Honestly.  I have a list of things that I’ve kept through the years that are options to write about, but I do prefer to be more topical and I try to write about whatever moves me from week to week. I find inspiration from so many different people and events, so I never have to worry that I won’t have something to say. This week, my inspiration came from my trainer. 

When she came into my life three years ago I was a different person than I am today. I often don’t even realize the changes that I have made but today it naturally came up during the course of my workout. I consider her a dear friend and she has changed my life, and her perspective is incredibly valuable to me. 

I was enrolled in her class almost exactly three years ago, as part of a 12 week wellness program for MS patients. It was something I had always wanted to participate in but because I was still working prior to that, it was not a possibility because the program took place during the week, during the day. I walked in there in the midst of a deep depression fueled by a relapse that took me away from my livelihood. I was under the misguided impression that my co-workers were my friends and I felt completely removed and isolated from them. I missed my students like crazy and I desperately wanted to feel well enough to work, but I was struggling to regain my strength. Plus I was carrying at least 30 pounds of extra weight brought on by high dose steroids and lack of mobility. With hindsight being 20/20, I can say for certain that I was at an all time low emotional place, and I didn’t even know it. 

Then I met Diane. She was like a ray of sunshine in a sea of darkness for me. On day one, I have to admit that I was a little intimidated. After all, she is exactly what you would expect of a trainer who demands that you listen and give everything your all, and who is accustomed to getting results. As an athlete, I was used to that, but because I was as low as I was, I feared I would let her down… or more importantly, that I would let myself down. 

After the 12 weeks, I continued to attend classes with Diane, as part of the benefit to having completed the 12 week wellness program was having access to “graduate” classes such as Strength & Balance and Spin classes. I found the classes so empowering because they were allowing me to begin taking control of my body again. The more empowered I became, the harder I worked, and the better I felt. Additionally, I met a whole gang of other MS warriors who quickly became the support I was longing for from the friends who turned out to be anything but. And so began the process of evolving for the teacher formerly known as Mrs. Rankin. 

One thing I know for sure is that we, as humans, owe it to ourselves to be open to evolving. Evolution, to me, simply means changing, learning, and growing. I didn’t realize how much work I had cut out for myself back then because I couldn’t see beyond the darkness of my normally optimistic soul. Diane (and my MS family) helped me begin to put the pieces of my life back together again, and thankfully, they each have taken their rightful place in my heart as we all move forward together.

I am forever grateful for the love and support of my very special MS family. They helped me find myself when I was so lost.

I am forever grateful for the love and support of my very special MS family. They helped me find myself when I was so lost.

Through exercise, I began to help my body get strong again. Through meditation, I have learned how to achieve true inner piece. And through therapy, I am still working on accepting my life as is, because it’s the only one I get. 

Don’t get me wrong: not every single day in the last three years has been sunshine and roses. But that’s ok because when I look back and I compare myself to where I was then, I am proud of the progress I have made across the board, both physically and emotionally. Looking at me, it’s easy to see the changes I’ve made physically. But equally important is the fact that I am more grounded, more centered, and I am definitely a much complete individual than I was before. I can only hope that when I look back on today three years from now that I can say the same because I’m actually pretty excited to see where I can go from here. 

I never thought I would be here today, feeling such joy every single day, and that I would be so grateful for my life as it is now. I am way different than I was three years ago, yet innately the same as I have always been. Except now I like to think that I am the new and improved version of the person I once was. As the saying goes, I may not be there yet, but I’m getting closer every day. 

#truth

#truth

The moral of the story today is that no matter how deep the darkness, there is light to be found, as long as you open your eyes to it. And after all, we can’t truly appreciate how glorious the sun is if we don’t experience the rain. Just as flowers don’t grow without rain, we as human beings don’t grow without overcoming the obstacles in our path. I, for one, hope to never stop evolving because seeing how far I have come is perhaps the most empowering feeling I have ever experienced. You should try it. You might be surprised at the new, improved you that emerges on the other side. I dare you. 

Even though I have gotten smaller, that's not what my journey has been about. It's about finding strength, hard work, staying positive, and never giving up. Even though may I have gotten smaller, my inner strength has grown exponentially larger.

Even though I have gotten smaller, that’s not what my journey has been about. It’s about finding strength, hard work, staying positive, and never giving up. Even though may I have gotten smaller, my inner strength has grown exponentially larger.

Strength

Last week, Bruce was home from work on Wednesday, so I asked him if he’d like to accompany me to my trainer to see what it’s all about. I was pleasantly surprised when he said yes, without even a moment of hesitation. The idea was multi-faceted in nature. I really wanted him to meet the woman who has helped me re-gain control of certain aspects of my life that I had lost after a bad relapse. I wanted him to see “the basement”, my happy place, and the place where so much magic has happened for me. My journey in the basement has been full of triumphs, but also has not been without its share of disappointments. I have laughed (and cried) in the basement, and I have opened up my body as well as my mind there, too.  I wanted him to have a visual of the space where I spend my time working to stay strong for us. Plus I wanted him to get an idea of just how hard I do work, despite my challenges. 

This is the basement. Diane is the boss of the basement and she will remind you of this if need be!

This is the basement. Diane is the boss of the basement and she will remind you of this if need be! It’s also one of my happy places.

I had warned Bru ahead of time that The Boss would not allow him to merely sit and watch, and that he would be expected to workout with us. He agreed, as long as she promised to “take it easy” on him, which she did. 

This is part of "inchworm", Starting from a plank position, walk the legs (without bending them) to your arms until your body is folded, and then walk your arms out until you are back to the plank position.

This is part of “inchworm”, Starting from a plank position, walk the legs (without bending them) to your arms until your body is folded, and then walk your arms out until you are back to the plank position.

As we entered the basement, we quietly said hello and moved over to the treadmill so as not to disrupt The Boss who was finishing up with the client before me. I got on the treadmill to warm up, and Bruce watched in wonder as I did my circles on the treadmill. The rule is that I’m not allowed to hold on with my hands at all. I start off walking forwards, then sideways, then backwards, etc., rotating first clockwise then counterclockwise. I have built up to this point, though. It didn’t happen on day one. I can see why this would impress Bruce, simply for the fact that I have very little feeling from my waist down, and zero feeling in my feet (thank you, MS for that lovely gift!).

IMG_1989.MOV      (click the link to see the video of my circles!)

As Diane finished with her other client, I was wrapping up my warmup and finally my guy got to meet this amazing woman who has helped make my life better in so many ways. We went through a workout where Bruce was challenged to train the way I have, week after week, for over three years now. For every move Bruce did, adjustments (or up-buttons) were added for me (the disabled one) because I work this hard every single week, and even though I’m sure he thought he knew how hard I was working, I was glad that not only could he see that, but also was now experiencing it for himself. 

The natural tummy tuck: pikes on the balance ball. I'm getting better all the time.

The natural tummy tuck: pikes on the balance ball. I’m getting better all the time.

In the end, Bru did great. The Boss was even quite impressed with how well he did, and so was I. But ultimately I like to think that Bruce gained a little perspective, not just on my life but also on his own. Despite the obstacles that MS places in my path, I do everything in my power to overcome them and I know that I am a stronger, more centered person for it. Nothing comes easily but I work my butt off because it’s very important for me to remain strong. Ultimately, the stronger I am, the more quickly I am able to bounce back from relapses, which is a huge quality of life issue. Plus it makes me feel more empowered, even though I know that working out can’t cure MS, it goes a long way towards helping me feel more in control of the things that are way beyond it. 

Superman!

Superman!

I don’t just do it for me though. I do it for Bruce. And for me. And for our future. And to make the most out of this wacky life we share, that definitely isn’t what we dreamed it would be, but that we wouldn’t trade for anything.  

Team Rankin. All in.

Team Rankin. All in.

 

Never Surrender

Bruce and I have been together for over 21 years now. We have been through some pretty rough times together, but we have also celebrated many milestones together. If you follow my blog, you probably recall my issues with my body image, and I am so very grateful that Bruce has always loved me, regardless of my size.

The cycle of my life with MS has always followed the pattern of gaining weight from high dose IV steroids (to treat exacerbations), and then struggling to lose thar weight afterwards. It’s hard enough for a healthy woman in her 40’s, but add in the crippling fatigue, neuropathic pain, neuro-sensory numbness, heat sensitivity, and other daily symptoms, and the struggle is magnified by about a gazillionfold.

I stopped working in the fall of 2013 when a particularly severe exacerbation knocked me off me feet. Literally. I improved more slowly than ever before and it became obvious that I would not be able to go back to work. The IV steroids and the prednisone taper left me with over 30 pounds of weight to lose while my strength and mobility were at an all time low. But Bruce cheered me on. He always has.

This week, he posted the following picture of me on Facebook, which I had sent to him, documenting my weight loss in the last year:

image

And with this picture, he posted the following:

“I want to recognize my wife, Rennie Leighton Rankin, for how hard she’s been working to get stronger and lose weight since an exceptionally bad Multiple Sclerosis relapse in 2013. The relapse forced her to retire from a job she loved, and go on a course of IV steroids so strong that it caused incredible weight gain. Despite crippling fatigue, poor balance, and loss of some feeling in her legs (among other things) she’s been working her ass off to get back to where she was before the setback. She says she doesn’t see the difference when she looks in the mirror, so I’m hoping this side-by-side comparison from just a year ago will convince her. Through it all she’s always been the most beautiful and important person in my life, and I can’t tell you how much I love her or how proud I am of her.”

So here’s the thing: I really don’t see a difference unless it’s in a picture where I can compare. I’m just happy that today I feel stronger and healthier than I did a year ago. It has taken a lot of hard work, both physically and psychologically, to get to this place. The place I’m referring to is the place where I accept my body for what it is. It has been a lifetime battle, and it will always be there. But these days I’m more forgiving of myself because I finally recognize that I have so many obstacles to overcome just getting through the day. I am learning to give myself credit not for looking better, but instead for how hard I work.

I would never post a side by side, full length selfie on my own. In fact, I seldom take or post a selfie unless I’m with at least one other person. Conveniently, with apps such as Timehop or memories on Facebook, I am reminded every day of my progress with pictures from this day in years past. I have actually been documenting it with similar side by side selfies, but only for my own validation since I will only get on the scale under extreme duress.

When Bruce posted this picture, I was blown away by his words, and then again by the response from friends and family all over the world. To have others appreciate how much I’ve gone through over the past few years to get myself back to a stronger place, both physically and mentally, is confirmation that what I’ve done wasn’t for nothing. While ultimately we must be satisfied and at peace with where we are in life at any given time for ourselves, and no one else, validation of our efforts  from others  is important as well. It allows us to see that we are not alone in this journey, especially when that path is shared with a debilitating illness such as MS. Not a day goes by without me thanking my lucky stars to have so many amazing people who support me in my journey. I couldn’t do it without them.

This is not, nor can it be, a solo mission.

The Place To Be

There are some places that I go to regularly that automatically make me happy. Sometimes it’s because of the environment itself, sometimes it’s because of the people who are there, and sometimes it’s a combination of both. The Rankin Homestead, and my little oasis in Millstone are just two of my happy places. But one spot in particular that always makes me feel good is the place where I work the hardest: my trainer’s gym. 

I have written about Diane before, and as much as I loved it when she led the MS exercise classes, I am benefitting a hundred-fold by working with her one on one. 

A gym (and/or a regular exercise program) can be incredibly frustrating for an MS patient. As someone who was an athlete my whole life, it’s hard to accept that my body is not always capable of doing things that were simple for me in my life before MS. 

The gym is in the basement and as I walk down the stairs, I always hear Diane working with the client before me. The energy in the room is palpable. Before I even make it to the bottom of the stairs, I am pumped and ready to go. 

This is the basement. Diane is the boss of the basement and she will remind you of this if need be!

This is the basement. Diane is the boss of the basement and she will remind you of this if need be!

The basement is a supportive environment where no one is judged by what they can’t do. Every single client, MS or not, is held to his or her own standard, and not compared to anyone else. Diane celebrates each accomplishment with us, no matter how big or how small. She gets equally excited for the top athlete who breaks new records as she does for the MS patient who perhaps is working on (seemingly) simple things like walking without an assistive device. 

In the basement, I feel loved and supported. I never feel subpar because I am encouraged to challenge myself. The phrase “I never give you anything you can’t do” is a common utterance, and I can’t argue because I know it’s true. Most times, Diane believes in me way more than I believe in myself. When I am there, I feel like a superstar, and that I am invincible. I am not afraid of failing. After all, she never gives me anything that I can’t do. 

Workouts are different every single session, and often include some TRX moves, which no one ever thought people with MS could do.

Workouts are different every single session, and often include some TRX moves, which no one ever thought people with MS could do.

The basement always feels inviting, regardless of my motivation to exercise that day. Once I’m there, there is nothing I’d rather do than have a really good workout with the best trainer I have ever known. Diane is one of the most talented, kind-hearted, and compassionate people I have ever met. The bond that she shares with her clients is so genuine, and we ultimately consider her more of a friend/sister/confidante than anything else. In the two years that I have been working with her, she has completely changed my life, and I can’t imagine my life without her. 

Once upon a time, Diane held our classes at the gym, and the studio had the same vibe as the basement, which tells me that my happiest places are not really about the physical locations, but who is there with me. Surrounding myself with people (like Diane) who exude positivity make everywhere I go one of my happy places. It’s a pretty awesome way to live. You should try it! 

Impatient Patient

As a patient who has MS, I never want to hear the word “relapse”. It’s one of those things that I know exists in the periphery of life with Multiple Sclerosis, but when I’m in a period of remission, it’s easy to be lulled into a false sense of security. To be clear, when I’m not relapsing, I am still dealing with the often invisible symptoms that are a constant. I have learned how to manage those symptoms, and when something new or different comes along, I am always taken off-guard. This most recent relapse came on so suddenly that I was completely stunned, which is ridiculous after more than 12 years living with the MonSter. 

Relapses are par for the course, and I know that they will happen. As much as I try to prepare, I will never fully be prepared for any of it. I never know what part of my body or how severely I will be affected. I am never prepared for the evils of treatment, with side effects that range from a metallic taste in my mouth, to massive heartburn, sleepless nights, and insane weight gain. I call it evil, but it is a necessary evil that generally offers fairly quick relief. 

Almost five weeks ago, this relapse came out of the blue and literally knocked me off my feet. Every relapse I’ve ever had has taken between three and six months to resolve. Then once I am comfortable with my new “normal”, another relapse comes along to remind me that MS will always be lurking in the shadows. 

This time, I took a different form of treatment that is relatively new. Unfortunately the side effects are much the same, but the treatment itself is humanized rather than synthetic. Instead of an IV treatment, I self-injected for five days, which is nothing for those of us who have had MS since the days when the only disease-modifying medications that existed were injectables. 

I’d like to share some lessons I have learned in the last several weeks. First and foremost, this patient is very impatient! I was told that this treatment would take longer to provide relief since it is humanized. After five injections I still hadn’t seen much difference! 

5 weeks post relapse and I'm feeling strong!

5 weeks post relapse and I’m feeling strong!

Additionally, I have learned how incredibly important it is for me to keep my body strong. I went into this relapse being stronger than I had been for a really long time, which resulted in me getting through it more quickly than I ever have. I’m proud to say that just about five weeks later, I am probably feeling 85-90% better. It’s a personal record for me. Somehow I feel like I made it happen that way, even though medically that’s probably not the case. I am taking credit for it, though, because it’s the first relapse I’ve had since I changed my life. Coming out the other side of a relapse more quickly than ever is definitely one of my greatest accomplishments. 

MS family love!

MS family love!

So what’s different now than before? Well, I am not working anymore, so there’s that. No work = no stress. Stress is a killer for MS patients. It affects us physically and actually magnifies symptoms, and even causes relapses. But more importantly, I paid special attention to my body AND my mind, which I never thought about when I was still working. In addition to exercising carefully with my trainer, I also made sure to meditate daily in order to maintain my sense of inner peace. Plus, now I have my MS family, so I leaned heavily on them for their understanding and support. And, of course, a positive attitude goes a long, long way. 

MS family love!

MS family love!

They say that “patience is a virtue.” I guarantee that whoever said that never spent five weeks (let alone three – six months) waiting to feel better! 

Relapse

The thing about MS that is most frustrating is that it is so unpredictable in nature that it often just knocks you off your feet (literally!). If you’ve been following my blog for some time, you already know that in the last two years my life has completely changed when a particularly bad relapse took me by surprise, eventually forcing me to end my beloved career as a teacher. 

In the time since the onset of that relapse (almost exactly two years ago), I have worked incredibly hard to reclaim my life. The first step was physical therapy, followed by cognitive therapy. I pushed myself to first get up and about, ambulating without assistance. It was a grueling process, but I was committed to it because I will not give up. Slowly I began feeling more like my old self again, but with more limitations than before, which seems to be the case after each relapse that comes along. I started taking advantage of the resources available to me, including exercise classes offered through the MS Center as part of their wellness program, and my instructor was instrumental in helping me take back control of what was within my reach. She made me see my body differently than ever before, teaching me about postural and longevity moves as well as offering sound nutritional counseling tailored specifically for me.  As my body was brought back into alignment, I was able to challenge myself more and more, and amazingly, although not yet at the ideal weight for my body, I was feeling stronger and more optimistic than ever before.

This is the difference one year made!

This is the difference one year made!

Two weeks ago, I had a regular scheduled check-up with my neurologist. At this stage in the game, the best I can hope for is a stable exam. I know that without a cure, I won’t get any better, but if I don’t get worse then that’s all I can hope for. First neurological test: close your eyes with arms held out in front of you and touch your right pointer finger to your nose. Nailed it! Now the left pointer finger. Nailed it! Next up, analysis of my gait. Exactly the same as last time: wide based gait, very common for MS patients. Not bad! Tandem walk (heel to toe) was not great, but it never has been. I always have a positive Romberg Test, which sounds good but it really isn’t. During this test, the patient is asked to stand with her feet together, hands at her side, and then close her eyes. The test is positive if the patient sways or falls when the eyes are closed. Don’t try this at home, kids! And the icing on the cake came when I was told that there was no new activity on my MRIs. Like I said, it can’t get any better at this point in my journey. It was definitely a reason to celebrate. 

Until the day after I got results of my MRIs. Life with MS can change drastically in just 24 hours. Still riding the high from the day before, I was caught completely off guard when my entire body started vibrating. It started on the inside first. I felt like everything inside my body was shaking. I felt like my breathing was fluttery and my voice was trembly. Then the tremors started in my hands and arms. I asked my friends if my voice sounded weird because I was feeling shaky. They said no, but the tremors were definitely visible. Living with MS means that weird things like this are not unusual. But when these things persist for more than 24 hours, it’s not a good sign. I woke up the next two days still not feeling right, and on the third day, I saw my neurologist emergently.

This exam went way differently that the one just two weeks (to the day!) earlier. First neurological test: close your eyes with arms held out in front of you and touch your right pointer finger to your nose. Poked myself on the forehead! Now the left pointer finger. Almost lost an eye! My gait was wide-based and very wobbly. The tandem walk was a complete and utter failure. It was obvious to my neurologist that in the short time since that MRI two weeks ago, I have some new brain stem activity happening. I started treatment, and will follow up in a month, at which time he may order an MRI. Considering that my last relapse started almost exactly two years ago, I’m doing better than average as far as length of time in between relapses. 

Keeping my fingers crossed for quick results!

Keeping my fingers crossed for quick results!

MS is always hovering in the background of my life. It is a constant, and I am given little reminders every single day, even when I am in “remission”. I don’t remember life before MS anymore, and that’s ok.  I am always adjusting because “normal” changes practically daily. I have to be flexible about most things in my life, which is something I was never very good at before MS came along. 

Of course it sucks when relapses happen. Definitely! But it’s par for the course with MS. I know that I am way more powerful and healthier than I was two years ago, and I am in a better position to get back to “normal” than I was back then. Plus, now I have my MS family, and with them at my side I am inordinately stronger than I ever was without them. It’s just like the saying goes (adapted for my situation, obviously!): MS can’t stop me, it can only hope to contain me.  

This is the latest picture of my MS family.

This is the latest picture of my MS family.

The Great Closet Purge

In the past I have written about weight and body image (http://www.makinglemonadebecauseican.com/weight/ and http://www.makinglemonadebecauseican.com/body-image/) and I have finally reached a new milestone. I’m not sure why I was holding on to clothing, as if they were relics from my past life. I think part of me hoped I’d once again be able to wear some of the beautiful clothing that had been sitting in my closets, taking up space, for nearly 2 years now.  I’m pretty sure there was the thought that I could be motivated by seeing them hanging there, but motivation has never been my problem. Every time I went in my closet to take one of the very few pieces that I wear regularly, I was reminded of a dream that may never come to pass.  I knew I would get there eventually, and this week, I finally hit the breaking point.

As I went into my closet to pick out something to wear for my volunteer job, I sat there, taking in my collection of clothing, wondering why the heck I was still holding on to theses items. Why taunt myself? In the heat of the moment, I began pulling out things I knew would no longer fit. I hadn’t planned on attempting to tackle this chore just yet, as it was as much emotional as it was physical.  I knew it was coming, but I had no idea how big a job this was going to be.  I have two walk-in closets, which the builder told us were his and hers closets, but in our house they are hers and hers.  

I was like a tornado, leaving a trail of destruction in my wake. I began pulling clothes off the hangers and throwing them into a quickly growing pile. I had to take a break after the first half of the first closet, explaining to my husband that it was going to get much worse before it gets better. His response was typical but fitting. He told me that at least if I fall (because I do fall more often than I care to admit!) I would have a soft place to land.  

The ever-growing pile of clothes!

The ever-growing pile of clothes!

It was as if the more I threw on the pile, the more liberated I felt. I have moved on with my life in so many other ways, so why was it so hard for me to move on here? In fact, it should have been easier to part with the clothes than to part with my livelihood. I have been working hard on the emotional piece of accepting disability retirement before I was ready to retire on my own terms. These tangible reminders of a very different me are completely useless to me now. The truth is, now that I’m not working anymore, I don’t really need a whole lot of clothes anyway! If I’m not volunteering, you will most likely find me wearing exercise clothes, so clothing requirements are not quite what they used to be for me.  

I had 5 bags not even including the pile pictures above.

I had 5 bags not even including the pile pictures above.

Allow me to explain why I feel so liberated. For the first time in my life, I feel comfortable despite the fact that I’m still not at my ideal size. Here’s why: I work very hard to be fit and active, despite my challenges. I take spin class, I work out with a trainer, and she sends me home with “homework”, which I gladly complete. I fuel my body with healthy foods, and not junk. It has been a slow recovery from a bad relapse, with a bad weight-related reaction to high dose IV steroids given as a treatment. But I’m starting to notice that I finally feel stronger, and I’m finally seeing changes in how I look. It’s slow as hell but it’s happening. Having the clothes in my closet isn’t going to help it happen any quicker! I do not want to compare myself to anyone anymore, not even the pre-retirement Rennie. I may never get back to where I once was, but that’s ok! I am learning to accept this aspect of my life, even though it has been a struggle as long as I can remember. You might not know it by looking at me, especially if you look through society’s lens, but for a chick with MS, I’m pretty bad ass. 

Who needs all those clothes? Not this girl!

Who needs all those clothes? Not this girl!

Weight

A few days ago, I was talking to a friend of mine about possible blog topics. I have many topics lined up for future posts, but none of them really jumped out of me this week. In our conversation, my friend brought up the topic of my weight loss journey. She recently lost a substantial amount of weight, and is admittedly “slightly” obsessed with the number on the scale. She then told me that this particular topic might be too “hot” and that I should write about something “easier”. In this new life of mine, I have made (and kept) a promise to myself to not shy away from anything simply because it seems difficult, because those are the experiences from which I grow the most. 

In my blog entry “Body Image” (http://www.makinglemonadebecauseican.com/body-image/), I wrote about my lifelong struggle with my weight, and the never-ending cycle of gaining weight from steroid treatments for MS, then losing (some of) the weight just in time for the next relapse and course of treatment. This is my reality. Every single medication that I take to help manage my many symptoms of MS has a possible side effect of weight gain. For years, I refused certain medications as a result, but MS progresses and vanity is not always an option. That is just one piece that contributes to my frustration.

Exercising with MS can be very tricky because I am always walking the very fine line between doing enough and doing too much. Overexertion has extreme consequences with effects lasting for days. There is always the risk of overheating when exercising, which leads to Uhthoff’s Phenomenon, also commonly referred to as heat-induced optic neuritis. Still not clear? In plain and simple terms, when my body overheats, I lose my vision (plus all of my usual symptoms of MS become magnified). In simple terms, when my body temperature is elevated, signals sent from the brain to the optic nerve are blocked or slowed down, thus affecting my vision. Imagine the horror of a fever! 

They said MS patients could not do TRX suspension training. Diane believed in us and we have proven "them" wrong.

They said MS patients could not do TRX suspension training. Diane believed in us and we have proven “them” wrong.

Spin class. We work our arms with weights while we cycle. "They" said MS patients couldn't do it. "They" were wrong.

Spin class. We work our arms with weights while we cycle. “They” said MS patients couldn’t do it. “They” were wrong.

Despite the necessity for careful calculation of exercise to-rest-ratio, I exercise at least 4 times a week. I’m not talking about and B.S. exercise, either. Twice a week I take classes with a trainer who is highly trained at working with MS patients. You can read about her on my blog entry “strength and balance” (http://www.makinglemonadebecauseican.com/strength-balance/). The classes include SPIN, TRX, and Strength & Balance, a super intense, full-body, core-focused class. At least 2 other days, I’m exercising at home. I don’t necessarily love to exercise but I do love knowing that I do my best to stay strong. My point is that I do not live a sedentary lifestyle. Despite having MS, I’m a pretty fit and active person.

The natural tummy tuck! It's even harder on the TRX!

The natural tummy tuck! It’s even harder on the TRX!

Side planks are not easy for anyone!

Side planks are not easy for anyone!

My diet is strict, but I don’t even mind. I don’t really eat anything aside from protein and vegetables. I make a ginormous salad every week, and I tend to eat it for every meal. It’s more about simplicity than anything else for me. One of the most common symptoms of MS is an overwhelming fatigue that makes even the smallest tasks daunting. You can read about it in my blog entry “Fatigue” (http://www.makinglemonadebecauseican.com/fatigue/). I prepare ahead of time because I know that if it’s too hard for me I won’t eat, and that wreaks havoc on the metabolism. I have been following (pretty much to the letter) a diet plan that was made specifically for me, and I honestly don’t cheat. Ask my MS family! There is always a reason for us to have a “little” celebration that includes more deliciousness than you can even imagine. When the food gets passed, I always say as long as I don’t start tasting things, I don’t miss it, so I decline.

Food prep day!

Food prep day!

I lost 20 pounds over the last several months, but the numbers on the scale were really getting to me, especially considering that I am about 2 pants sizes smaller. I decided I needed a break from the scale because it was not helping my ego at all. I waited for 8 weeks before I stepped on that god awful machine again. For the first time in my life, I was actually looking forward to seeing obvious progress. I was seeing changes in myself and I wanted to see them quantified on the scale. I can’t even describe the depth of my frustration and disappointment when I saw that I had gained a pound or 2. What the heck? How is that even possible? I tearfully reached out to my trainer. She reassured me that I am working out hard and I am rebuilding muscle that MS stole from me during my last exacerbation. I know she is right, but it still isn’t fair!  

My meal of choice: a great big salad, and citrus infused water.

My meal of choice: a great big salad, and citrus infused water.

Yes. My friend told me how hard she worked to lose the weight, and I am by no means trying to diminish her success. It IS hard work to lose weight. I am ALWAYS working hard, and against obstacles that most people can’t even begin to understand. It’s hard not to compare myself to those around me, even though I know that there is no reason to do so. We all have our struggles in life, and unfortunately this always has been, and always will be a battle for me. I am trying to stay focused on the real reason for working so hard: to be healthy and strong. I tend to dwell on my failures rather than celebrate my successes, a life-long behavior that I vow to change, starting right now.

I have come a long way in the last year or so. I am much stronger, happier, and healthier than ever. I have made great strides, both inside and out, and I’m proud of myself. It’s not an easy road, but I know I’m headed in the right direction.  

I am lucky to have this guy, my biggest cheerleader, who loves me regardless of my size.

I am lucky to have this guy, my biggest cheerleader, who loves me regardless of my size.