Tag Archives: new chapter

Lemtrada

On a daily basis, I don’t think much about MS. I mean, I know it is there, but 14 (+) years in, the symptoms are generally manageable but more of a nuisance than anything else. I don’t feel sick because I have been adjusting to my new normals for so long. Usually those norms become a part of who I am: neuropathic, off-balance (read: clumsy), unable to sleep, and tremor-y, just to name a few.

But last week the vertigo hit me from out of nowhere and I spent four days crawling around my house. I needed to take care of things on the homefront, and crawling was a better option for me since I was closer to the ground which meant a shorter distance to fall.

Normally I wouldn’t even think about calling my neurologist because I always think these things are just par for the course living life with MS. And even though I know the rule of thumb is generally that your neuro should be informed of any “new” symptom that lasts more than 24 hours, I seldom listen (insert judgements and “shame on yous” here). I asked my MS sisters if they thought I should call, and they responding with a resounding “DUH”! Ok so they didn’t say duh but they did tell me what I needed to hear.

I saw my doctor emergently just one day later. I have a great relationship with him and have been seeing him almost as long as I have been diagnosed. It will be 14 years in November. So usually my bouts with vertigo have been “positional” which basically means it only happens when I am sitting, standing, or laying down in certain positions. This is NOT MS. But when the vertigo is constantly present, then for sure it involves activity on the brain stem. It also causes utter nausea, and I have been walking around with what feels like vomit at the top of my throat ever since this started. Once we established that MS was indeed the culprit, he looked at me, as serious as I have ever seen him, and said, “Rennie. We need to talk.” I knew what was coming yet held out hope that magically he would have a brilliant solution for me.

Since corticosteroids make me crazy, this is the solution for immediate treatment of the relapse.

What he told me was the following: “Gilenya (the disease modifying therapy (DMT) that I have been taking since clinical trial ) is clearly no longer working for you.” I have seen writing on the wall for a long time now, but I still felt like I had been punched in the gut as the color, I’m sure, drained from my face. I know my situation. I have failed on every single DMT out there. Except two. I am precluded from taking the one I had been waiting for as it progressed through clinical trials, due to my recent battle with breast cancer. That leaves just one more option: the one I have called “the big gun” since before it even came to market in November of 2014.

Gilenya has been good to me and I am very sad to say goodbye.

While Lemtrada (Alemtuzumab) promises great results, it is not without risks. Scary ones. There are pre-medications and post-medications, not to mention monthly blood work for at least 6 years after the first infusion. In simple terms, Lemtrada is an antibody that works by depleting certain white blood cells, partially responsible for immunity. Since MS is thought to be an autoimmune disease where the body mistakenly attacks the brain and central nervous system, the theory is that depleting the culprits allows the body to repopulate with healthy cells that have no memory of their previous programming, thus potentially reducing (or even stopping) MS activity.This means that I will be even more vulnerable to secondary infections and illnesses while my immune system works to re-build itself. The thought of wearing a protective mask and explaining to my two year-old nephew why I can’t hug and love on him the way he’s accustomed to breaks my heart. Plus, if it doesn’t work, there are no more options out there for me, and they still haven’t done research on which, if any existing treatments, would even be safe after taking Lemtrada. That, for me, is the scariest part.

This is just the first bit of literature I have been given, and I know there is plenty more to come.

But if there is one thing I have learned from MS, it’s that I can’t be scared for the future. I need to focus on the present. For me, there is no decision to be made because even though I complement my traditional treatment with alternative ones, not being on treatment is simply not an option for me.

Essential oils and a chakra bracelet help keep me balanced.

As I have done for the past 14 (+) years, I will do what I always do: Pick myself up, put on my big girl panties, and do what I need to do to in order live my best, most productive, and happiest life. After all, isn’t that what everyone aspires to? Plus, I still have plenty of fight left in me, and I am far from done!

Transformation

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

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

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

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

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

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

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

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

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

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

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

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

Curve Ball

Other than having MS, I’m generally a pretty healthy person. I seldom get sick because I’m so careful about how I live my life. I exercise, I eat well, and as my former students would attest to, I’m slightly germ-phobic. I don’t consider that a negative trait because I’m sure that’s how I remain healthy. But one thing I was told early in my journey with MS, is that having one illness does not preclude me from getting others. It’s something I filed in the back of my head somewhere and have only recently discovered how true it is. 

As a woman in her 40’s, I am always on top of my wellness visits with all of my doctors. After all, I am a rule girl. I do my full body check with my dermatologist every year, get an annual physical with my primary care physician, visit my ophthalmologist once a year, see my gynecologist annually, and, of course, I get my mammograms. I have had irregular readings on my mammograms in the past, which have always revealed nothing unusual upon repeat scans. 

So this year, when I was told that they would like to take some further imaging and ultrasound if necessary, I didn’t panic. Why would I? Offering full disclosure here, I have scar tissue from a breast reduction and being called for follow-up mammograms is not unusual under these circumstances. 

This year, unlike past years, I was told that I should see a breast specialist because the mammogram and ultrasound revealed irregularities. I still didn’t panic because I’m so used to visiting doctors and specialists of all sorts, thanks to MS. When the doctor examined me, she didn’t feel anything but she did see what the radiologist had seen on the films from the mammogram as well as on the CD of my ultrasound. When she told me that I needed to have a stereotactic biopsy, I still didn’t panic. She explained that most likely it was nothing, and if it was anything, it was stage zero and very treatable. 

The moment of panic came when I walked in the room for this biopsy, and saw the table that I was going to be lying down on during the procedure. (Think: operating table with a hole in it where I was to lie face down with the appropriate breast in the hole.) To be fair, it wasn’t scary at all, and the doctors and nurses did everything they could to make me feel as comfortable as possible. 

After the procedure, I was told that I would hear my results within 4-5 business days. The timing was tight because of the holiday falling smack dab in there. I debated with myself endlessly about whether it would be better to hear before New Year’s Eve, or continue to not know anything until after the holidays. Ultimately the choice was not mine, and I got the call on New Year’s Eve eve. 

With my sister on one side of me and Bruce on the other, I sat and listened to words I never expected to hear: it’s cancer. I promptly scheduled an appointment with the breast specialist for her first available appointment in order to discuss the biopsy findings further and also to come up with the appropriate treatment plan. As of the publishing of this entry, that appointment has not yet happened. 

It’s a weird feeling to hear this kind of news. Scary, of course, but also relieved that I am a proactive patient and this has been caught early with a very positive prognosis. Still, I feel like I’m somehow living someone else’s life even though I know full well that having MS doesn’t guarantee me immunity from other illnesses. 

One thing I have never done is ask “why me?”, not referring to Multiple Sclerosis, and not in this situation either. The truth is, that I believe in the universe, no matter what it decides to dole out to me. By overcoming obstacles in our path, we are made stronger. When I was diagnosed with MS I never questioned it, and my journey has brought me many gifts and my mission has become more and more clear the longer it has been a part of my life.

So here I am, starting the new year, ready to fight another fight. I’m not sure what the universe has in store for me, but I do know that I would not be given anything more than I can handle.  I also know that somewhere along this next part of my journey, my purpose will become apparent just as it always has in the past. 

The lesson for all of us here is the following: sulking, questioning, and negativity are all a waste of our precious energy. Instead, let’s use our energy in productive ways.  I, for one, propose a toast to all of us warriors out there, fighting to overcome whatever physical or emotional obstacles we are faced with. Grab a glass of lemonade (half-full, obviously), and be grateful for your blessings as well as your challenges, because both are a part of living a full and rewarding life. I’m looking ahead at 2017, cancer and all, and I can’t even imagine how much stronger I will be next year at this time. Cheers! 

August

It’s that time of year again. As August comes to a close, the back-to-school photos are slowly creeping in to my various news feeds. This has never been an easy time for me, whether I was full of anxiety preparing for a new school year, or even now that I am no longer working and full of nostalgia for what used to drive me. My emotions are all over the place, and even though I have come to terms with how things have worked out for me, times like this still tug at my heart strings. 

Former students have always remained a huge part of my life, when I was still working, and even to this day.

Former students have always remained a huge part of my life, when I was still working, and even to this day.

This is going to be the third opening of school since I began my disability retirement. It does seem to get easier every year, but I don’t think I will ever be un-phased by it. The first year, I went running to my daddy’s house in Florida to escape, and took myself completely off of Facebook for two weeks. I am pretty sure that I just did not want to see the world (in which I proudly resided for 15 years) go on without me. But it does. Everyone is replaceable at work. EVERYONE. And even though I thought my world would come to a halt, it most certainly has not. Quite the opposite, actually. 

I no longer spend the summer, especially August, in back-to-school mode: decorating my classroom, lesson planning, PowerPointing, re-vamping past activities, creating seating charts, photocopying, and shopping for school supplies. Yet the other day I still couldn’t turn away from a commercial advertising a 12-pack of Sharpies for $3.00! (It wouldn’t have been so bad if Bruce didn’t catch me in the act. Old habits…)

I never imagined that I could exist in a world where I wasn’t Mrs. Rankin, the teacher. My whole life revolved around my “kids” and my job. I remember feeling such intense loss and emptiness, and I felt as if my whole identity was a question mark without that one thing that had always defined me. But in these last three years, I have worked incredibly hard on figuring out who I am without what I had always considered the characteristic that most described me. 

Having been a teacher will always be the one thing I am most proud of in my life, because I was lucky enough to meet and get to know a new crop of amazing students every single year. People don’t become teachers for the salary, but the rewards are priceless. Nothing makes me happier than visiting with former students who are growing up to do unbelievable things as they find their own ways to being productive members of society. 

Three years later, I still find this time of year bittersweet. But I no longer feel like that world goes on without me, because this new world that I have been exploring is fulfilling my soul in completely different ways. For every teacher “friend” (a term used very loosely since only about three of them have proven to truly be friends) that pushed me aside as part of their past, I have been blessed with new friends who have made it clear that they are committed to be by my side in the future. 

I will always miss my students, but I will never miss the way I sacrificed so much of my life (and my energy) for my job. Life is about the loving relationships we build and maintain, and memories we make along the way. Those memories should include the people we love most, and although I loved (and still do) the thousands of students who entered my classroom through the years, I am grateful that my focus is now squarely on me. It might sound selfish, but I spent too many years focusing on others that I lost sight of the most important thing of all: taking care of number one! 

For as much as MS has taken away from me, I have been given many gifts that I never would have been given otherwise. I now appreciate and am grateful for every minute I get to spend with my loved ones, and I never take it for granted. I recognize how fortunate I am to be able to listen to my body, resting when necessary, and making it stronger by dedicating the time (that I couldn’t spare when I was working) for proper exercise. And of course, I will be forever indebted to my MS family, including the best trainer ever, for walking (or hobbling or rolling) into my life and changing it forever, in all the best ways possible. 

So even though I’ll always feel a little pang of sadness at the beginning of the school year, it does, indeed, get just a tiny bit easier as time goes by. There is a reason why things worked out this way for me, even if it isn’t blatantly clear to me at the moment. But I believe that the universe works in powerful and mysterious ways, and things unfold exactly as they should. The only thing I know for sure is that I am a happier, more balanced person now, even despite the obstacles and the circumstances that brought me here. In fact, three years ago, I would have never been able to say, with 100% sincerity, that life is pretty damn good. Today I can tell you that it’s friggin’ awesome…as long as you open your eyes and take a good look around. 

If you open your eyes (which I was always too busy to do), you will see the world a whole lot differently!

If you open your eyes (which I was always too busy to do), you will see the world a whole lot differently!

Half Full

I love my volunteer job for so many reasons. In addition to the administrative tasks that I work on while I’m there, I also get to interact with the patients as they go through the intake and the exit procedures of the office. Though many times I serve mainly as a friendly face on the other side of the desk, there are occasions when I feel I serve a much greater, more important purpose, and often I feel that the patients affect me way more than I affect them. These are the moments that remind me of how far I’ve come, and they are the moments I never forget. 

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One such occasion happened a few weeks ago, when I had the pleasure of meeting a patient I had never met before. This woman has been a long time patient, always coming in with a smile on her face and a positive attitude. She’s also a workaholic and a perfectionist who defines herself by her job. To be honest, she quite reminds me of the old me: the Mrs. Rankin me. 

As a teacher, I was never done, and my work came with me everywhere.

As a teacher, I was never done, and my work came with me everywhere.

Unfortunately, after 23 years of steadfast dedication to her job (as a paralegal), my new friend arrived at the place that no MS patient wants to be. She suddenly finds herself in the position of having to choose between her passion, her livelihood, the one thing she feels truly defines her, and managing her MS on a daily basis. Not everyone gets to this point, but many of us do. For us, just living with Multiple Sclerosis becomes our full time job. 

I sat in my usual seat as I listened to her cry about how she wasn’t ready to stop working, and how much she loves her career. I couldn’t help but go to her, because I was getting emotional myself. In an instant, as the tears began to flow, I was immediately brought back to the moment when I was faced with the very same decision. My heart was breaking for her, and also a little for myself. It’s always frustrating to think that perhaps others won’t understand, because we “look so good”. It’s also scary wondering how will we find our self-worth if we are not contributing to society somehow through our work. Plus, there’s a fear more powerful than anything, that’s always in the background because MS can wreak havoc on us at any moment, without warning. All of that adds up to tears. 

I tried to comfort her as best I could, knowing that it probably wouldn’t help much, but also that I could definitely give her the benefit of my experience. I told her that I was in her exact position three years ago, and that I have no regrets. I told her that everyone is replaceable even if you’re the best at your job. Once you’re gone, there’s always someone else. I told her that she spent the last 23 years working at her job, so now she can spend the next 23 working on herself. I told her that she would eventually stop crying, even though it didn’t feel like it right then. I told her that it wasn’t her fault that her body was letting her down. I told her how much better she would feel physically, without the incredible amount of stress any job places on our bodies, causing symptoms to flare. I told her how amazing life can be when you look beyond your job because only then can you be completely content and at peace. We are, after all, human beings, not just work machines, and how lucky she is to be forced to learn this while still at a young enough age to really enjoy living for a long time to come. 

It really blows my mind how my life has changed in just three years. It’s a short time, yet I’ve come such a long way. I remember how defeated I felt…how utterly devastated. I felt worthless. Like a failure. Like my life was now meaningless. But you know what? I just had to find the true meaning and value without using my profession as a crutch. 

This was my home for many years, and now my world is so much larger than this one classroom.

This was my home for many years, and now my world is so much larger than this one classroom.

Three years later I can be proud of who I have become. I volunteer my time, and I love that I am able to give back in this small way to the medical team that has always taken such good care of me.  I work on my body in ways that make me stronger, even if my nerves are misfiring. I happily enjoy whatever time I get to spend with my loved ones because I am fully focused on them, without the work distraction. I have an entire MS family who loves and supports me 100% of the time. I have so much to be grateful for, and I am now, more than ever, a glass-half-full-kinda-girl. 

MS family love.

MS family love.

Diagnosiversary Redux

In preparation for my blog this week, I decided to read what I had written about my diagnosiversary last year, 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 13th anniversary of my diagnosis of Multiple Sclerosis, I would have written the same exact thing I shared last year 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 13 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 wrote last year on year 12. Nothing has changed about that day, except year 13 has brought more challenges, but also many more rewards. 

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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 twelve 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 12 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 12 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. 

Winning

Please take three minutes to watch this VIDEO before reading today’s blog!

Years ago, while I was still working, my principal showed us this video at a faculty meeting. Even though the context in which it was presented escapes me, the power of this video never has. The message is clear, and it can be applied to anything at all. 

The reason I’ve been thinking about this is because lately I haven’t quite been myself. Physically I have been feeling off, which immediately affects my mental state. As if the MS (and the many joys it brings me in the way of obnoxious symptoms) isn’t enough, this allergy season is a brutal one for me. I end up in an endless cycle where coughing causes back spasms, disrupting my already troubled sleep patterns. This then causes me more pain, because less sleep/rest causes my pain to intensify. Spending days on the couch “resting” makes me feel like I’m being lazy, or that I should be doing other things. I know my body needs the rest and I allow it, but it doesn’t do much for the psyche. Even the girl with the perpetually half full glass of lemonade has her moments. As much as I am that girl, I do allow myself the occasional short-lived pity party

The thing is, everyone feels down in the dumps every once in a while. If you don’t, then I admire you, and I’d love to know what your secret is. It’s human nature to  experience all emotions, including sadness. If you don’t experience sadness every once in a while, the happy times wouldn’t be nearly as sweet. What I do know for sure is that the longer you wallow in your self-pity, the more you retreat from everything and everyone in your life. Once that happens, even the smallest of tasks seems impossible, then stress sets in, and all of a sudden you feel utterly overwhelmed. This is yet another endless cycle unless you are strong enough to pick yourself up. 

When I was still teaching, I never gave less than 110%, up until my (unexpected) last day of work. I was awarded "Teacher of the Year" just 2 years before MS ended my career.

When I was still teaching, I never gave less than 110%, up until my (unexpected) last day of work. I was awarded “Teacher of the Year” just 2 years before MS ended my career.

The girl in the video fell due to something outside of her control. Another runner “clipped” her heel, causing her to fall. As I see it, she had two options: lie there on the ground sulking in the fate handed to her, or else pick herself up and do something about it. Isn’t this how we should look at life? Once you pick yourself up from a fall, amazing things can happen. 

No matter what is happening in my life, I do my best to keep smiling. It's not always easy, but it always makes me feel better.

No matter what is happening in my life, I do my best to keep smiling. It’s not always easy, but it always makes me feel better.

In my life with MS now, the running part is just a metaphor. When I fall down (physically OR metaphorically), I know for sure that nothing good can come from it. But when I pick myself up, nothing bad can come from it. There is no such thing as failure when you’re trying your hardest, and you simply can’t compare yourself or your abilities to anyone else. You can’t judge yourself by comparing your own capabilities (or disabilities) to other people or you will never find peace with your station in life. 

Again, I am not saying that you don’t deserve the occasional pity party. But the quicker it’s over, the better your mental state will be, and as we know, stress and negativity will certainly affect MS symptoms. With MS, so many things are outside of your control, why not do your best to take advantage of what you can control? Ultimately, the choice is yours. Are you going to lie down and lose the race? Or are you going to get up and do what you can? You might not win… but then again, you might! 

I didn't win the race, but I gave it everything I had. I ran this 5K on my 9 year diagnosiversary in 2012. Things have changed for me, and I can't run anymore, but I still give my all to everything that I am still able to do.

I didn’t win the race, but I gave it everything I had. I ran this 5K on my 9 year diagnosiversary in 2012. Things have changed for me, and I can’t run anymore, but I still give my all to everything that I am still able to do.

Vacationing

Who doesn’t love a great vacation away from the stresses of everyday life? When you think about taking a vacation, images of restful days in tropical places, or even experiencing a myriad of adventures unique to the chosen vacation spot come to mind. For me, and for many of my fellow MS warriors, there is nothing more stressful than a vacation, from planning and packing, all the way through to getting back home afterwards. 

Heading out for our most recent road trip.

Heading out for our most recent road trip.

In the last few years, Bruce and I have taken shorter vacations (long weekends) within driving distance, for many reasons. First and foremost, being able to move on our own schedule is a huge stress-reliever. We don’t have to worry about getting to the airport, going through security, or any unforeseen delays out of our control. I don’t get exposed to the range of germs in one of our cars as I do on an airplane, which may seem paranoid to many, but those of us with compromised immune systems are hyper-sensitive and we are affected quite easily, regardless of the precautions we take. It’s also nice (and a necessity!) to travel with ALL of my prescribed medications, especially the one that is not federally recognized and I am not allowed to have with me when I travel on an airplane. Yes, I’m talking about my medicinal marijuana, without which I can not sleep, and I’m unable to find relief from the constant neuropathic pain. Additionally, crowds and small spaces cause me so much anxiety because I can’t maneuver through them like I used to, and can push me into a full-blown panic attack at any moment. 

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Luckily, Bru is a pretty cool guy. He understands that things are different for me now and he is open to road tripping to destinations within driving distance for us. This allows us to stop as necessary, whether to use the restroom, or simply to stretch my legs without fear of being knocked over by turbulence or even the vertigo that happens when I’m in a small, crowded space, such as an airplane. The trade-off here is that we stay at beautiful hotels and resorts because we aren’t spending so much money on airfare. Plus, having our car with us means we can go out to pick up things we might have forgotten to pack, and not have to spend a fortune at the hotel gift shop trying to get those same items. 

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We research our destinations and we have an idea of the things we would like to do and the local attractions we’d like to see, but we remain flexible in case I need to rest in between activities. Plus, we try to go to popular places, but off-season in order to avoid the crowds. Inevitably, certain attractions have shortened hours, but with a little advanced planning, we enjoy everything that much more because there are so many fewer tourists around. When I am able to enjoy myself more, Bru is able to enjoy himself more, which makes it all worthwhile!  

Sometimes we even do things that don't involve eating or drinking, like this stop at Indian Echo Caverns near Hershey, PA.

Sometimes we even do things that don’t involve eating or drinking, like this stop at Indian Echo Caverns near Hershey, PA.

I’m not saying I’ll never get on an airplane again, but I really wouldn’t mind if I didn’t. I am fortunate in that I did my share of traveling while I was young(er) and healthy. I haven’t been everywhere I dreamed of going, but these days, vacations have taken on a whole new meaning for us. Of course we still enjoy seeing new places and experiencing new things, but now it’s more about spending time together, enjoying each other, and getting away together. It’s about laughing and eating and drinking and more laughing. 

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Life with a chronic illness such as MS forces me to make compromises every single day. Those compromises don’t just involve every day activities, but also things seemingly as innocuous as a vacation away with my husband. Gone are the days of long, epic trips to exotic and exciting locales, such as Alaska (where we finally took our dream honeymoon for our tenth wedding anniversary), but that’s ok. We have discovered that we love exploring anywhere, and we actually really love road trips! And the truth of the matter is that vacations are also about relaxing and taking it easy, which we do a heck of a lot more of now. 

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Most healthy people would say I’m crazy, and perhaps even some of my fellow warriors out there (although I know at least four others who get me here!), but Bruce and I have never followed the herd, and we aren’t about to start now. We do things our way, and we don’t look back. While you take your fancy vacations to places like Europe or Hawaii, Bru and I will be at some craft brewery somewhere on the East coast, drinking beer and playing Sesame Street Chutes and Ladders. 

(You know you’re jealous!)

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Optimistic Thoughts

I am a huge believer in the power of the universe and I firmly believe that what you put out there comes back to you in spades. I have often wondered if my optimism is tied in to that belief of mine. Whatever the reason, I do think that there is always a balance in the world, and we can control it ourselves.

I never understood those people who complain incessantly about everything. If you look on your social media, I’m sure there are those people whose posts ALWAYS make you cringe. There are so many things that I could complain about, but I don’t. In fact, my family and friends get upset with me because I even downplay my symptoms because I don’t want to be the “negative Nelly”. The challenge in this life that we are given, is to find the bright spots through the darkness. Once you are able to do this, your whole perspective changes and you take pleasure in those bright moments, no matter how brief or seemingly inconsequential they might be.

I try to pay things forward in my own small way, especially when I run into someone who seems in need of a little optimism. I remember one day while I was still working, I arrived at the drive-through for my extra large Dunkin Donuts coffee, promptly at 5:45 am, as I did every single day. I ordered my coffee and pulled around to the window with my money (exact change ready), as this happened before there was an app for that! When I got to the window, the person knew me from my daily visits, and informed me that the car in front of me had paid for my coffee. It was such a small thing, but the gesture was huge. I was so grateful to that person for starting my day right and for reminding me that human nature, at the very core, is good and kind.

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This is how I started every single day when I was working.

The other day, I had an opportunity to pay it forward in my own way. As a general rule, when I put gas in my car, I always go inside where this particular gas station has a Dunkin Donuts. (I guess you could say that there is a pattern here!) When I pulled up, the gas attendant was clearly not in a happy mood. My usual approach with cranky people is to “kill them with kindness”. Sometimes it’s hard to tell if people don’t want to engage with their clients or if there is a cultural or language difference, but I don’t like not being able to make someone smile. I take it almost as a personal affront. As I asked for my credit card back from the guy so I can go inside, because I don’t like to let it out of my sight, especially having already been a victim of identity theft.

Card in hand, I went inside to Dunkin Donuts for my once-upon-a-time usual: extra large coffee (hot because it isn’t quite iced coffee season yet), black. They know me there, and were already filling my cup as I ordered. (Again, a pattern?) I asked the girl behind the counter what the guys outside generally order, because I wanted to buy one of them a snack. She asked which guy, and I pointed to my car. She then grabbed his favorite (an old-fashioned donut), and I thanked her for helping me out.

An old-fashioned, Dunkin style.

An old-fashioned, Dunkin style.

When I headed back to my car, I handed the guy the bag, and told him I bought him a snack. He looked at me incredulously, and I wasn’t sure if he didn’t understand the language, or if he didn’t understand the gesture. I told him that I asked the girl inside what he likes, and I bought it for him because it seemed like he needed a smile. I don’t think his English is all that great, but he finally understood. He thanked me profusely and kept bowing to me. It was a small thing to do on my behalf, but I’ll bet that he won’t soon forget it.

While it is true that I was not dealt a perfect hand, living with MS, I try my hardest to remain positive about everything, nonetheless. It is so easy in life to dwell on the challenges I live with every day, but it’s just not in my nature to be that person. Plus, I realize that even with everything I go through, things could be so much worse. I have a roof over my head, food in my fridge, the best husband (and fiancée!), puppies to snuggle with, a supportive family (including my in-laws), my very special MS family, my many “kids”, awesome friends… And all these things make me smile. I hope that by buying a donut for my grumpy gas station attendant, I gave him a reason to take inventory of all the things he has to smile about. And maybe, just maybe, he’ll do the same for someone else.

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:

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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.