Monthly Archives: May 2020

Progress

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Before I stopped working, I was such a different person. I was always on edge, despite my best efforts not to be, and I was constantly thinking about things that, in the long run, just aren’t that important. I ran around like a chicken with my head cut off, without paying attention to much aside from what I HAD to get done. I never thought about the things that are so important to me now: gratitude, awareness, and self-care. Such simple concepts, yet they are often overlooked by the average person.

Now I feel like I am a completely different person. I don’t remember what it’s like to not take my own needs into account because I am so much more aware of what I need to do for my body so that I can function as normally as I can. If something feels “off”, I recognize the feeling, and I do what I need to do in order to self-correct. Sometimes it means trying to rest more than I’d like, sometimes it means I need to stretch, and sometimes I need to just “power through”, trusting that I have learned to listen to my body and do what’s right. This has not been an easy lesson to learn, especially for a girl who spent her whole life as an athlete and also a perfectionist. MS and perfectionism do not go well together so in my old life I spent more time frustrated at myself when I shouldn’t have been. No one gives you a trophy for being perfect, and no one really is. Our flaws become a part of us, and certainly give us goals to work on in order to be better versions of ourselves. I can say with 100% confidence that I am far from perfect, but I am a better version of me than I ever have been, MS, breast cancer, diabetes, and all.

In my past life, I never would have taken the time to admire a beautiful view like this.

I also don’t allow myself to get caught up in simple irritants such as traffic or dumb drivers. Of course I am referring to non-pandemic times here! It’s just not worth the stress. If there’s traffic, I try to look at it as a way to catch up listening to my favorite podcasts, or simply take in the view as the seasons change from one to the next. Similarly, I find I’m more flexible where it comes to scheduling anything, because I am not working. I understand that people who have jobs deserve to have me work around them, just as I would have liked others to do for me while I was still working. It’s always appreciated by whoever is scheduling the appointments because they know that other clients/patients can only make certain time slots. Again, I am talking about the days before we were all at home and there were always appointments to get to. I’m always willing to reschedule for the benefit of someone else who needs it, and in a very small way that doesn’t affect me at all, I am paying it forward.

I’m not saying that without work I have no goals and no schedule. In fact, I thrive on a schedule just like most teachers. I went from something so rigid that I could only use the bathroom on scheduled time, to nothing. Keeping a schedule for myself helps me feel like a productive member of society, regardless of what that schedule entails… but now I have the option to not do everything I have planned if my body is not allowing it. And MS loves that I can use the bathroom whenever my bladder feels the need, because that hasn’t always been the case, and it was one of the most difficult things I dealt with while I was working. I try to stick to my goals and my schedule but I don’t beat myself up if things don’t get done exactly in the timeline I imagined. This is a big deal to a lifetime perfectionist, and I am pretty proud of the progress I have made, even if it took breast cancer to teach me this lesson.

Even in pandemic times, I make a schedule for myself every single week. It revolves around yoga classes but then I set aside the time to do other things too.

The last piece that has rounded out my post-teaching life is gratitude. I was so work-driven in my old life, and I always put myself last. When I thought about gratitude (which was not all that frequently), my thoughts included simple things like being grateful that my most “active” class (see that? I never thought about any class being the worst) was tolerable and didn’t leave me beaten down. Now, when I think about gratitude, it’s bigger and all encompassing. I start and end every single day by listing things for which I am grateful, and I also have daily affirmations that keep me focused on me and my progress. Now, my gratitude includes things like being thankful for this body of mine because no matter how damaged it is on the inside or what it looks like on the outside, it’s the only one I’ve got and it’s getting stronger every day.

No words needed.

The things I have written about are important to every single one of us, and I wish i knew just how much when I was living my past life. It’s so sad that it took an MS diagnosis and its progression to force me to change my life completely before I learned to put myself first. If I don’t take care of myself (physically, mentally, and spiritually), I am no good for anyone (or anything)  else. Ok… so maybe you don’t have MS or any chronic conditions that dictate your life. But I truly believe that committing to your own self-care can only make you a better version of yourself. I mean, clearly you are already awesome because you are reading my blog… but just think of how much more awesome you could be!

 

Clinical Trials

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This week I am sharing an updated version of a previous blog post because I couldn’t let Clinical Trials Awareness Week go by without acknowledging the many, many patients who put their health and welfare on the line each and every day as human guinea pigs, in order to broaden the spectrum of treatment options for patients suffering from a myriad of conditions. I did it once and I’d do it again, except that now I seem to have aged out of most trials, I’ve been diagnosed too long, or I’ve been on too many treatments, all of which are to be expected when you’ve been diagnosed almost 17 years and living with symptoms for over 25 years easily. If you know anyone who has served in the capacity of human guinea pig, celebrate and honor them for doing for the greater good. This week, I proudly present my own experience as a clinical trial participant.

In honor of Clinical Trials Awareness Week (May 18-22, 2020), I decided to share my experience as a participant in the clinical trial for what was once FTY720, then Fingolimod, and ultimately became Gilenya, the first oral medication for relapsing forms of Multiple Sclerosis.

The months leading up to my search for alternate treatment options were some of the darkest of my life. I had exhausted all of the available approved medications (at that time only four different injectable options). After I had failed on a once a month infusion therapy, which to me was nothing more than hanging out with my friends once a month, except we all had IVs in our arms, I began my last remaining option: a daily injection, which ruled my world. I had horrible injection site reactions, regardless of how diligently I rotated my injection sites. I tried a heating pad, I tried ice, I tried morning, I tried night, I tried just after a shower. I tried everything to make things better, but to no avail. The worst part about the MS treatments is that they don’t offer any “relief”, and taking them is really all about the future. They are the best chance we have of slowing the progression of an inevitably progressive illness, but there is no instant gratification, and the results will never truly be known. In any case, I knew I wanted to be on treatment, but I did not feel that I could withstand the torture of the burning lumps, bruises, and excruciating after-effects of my current medication.

With no other treatment options available to me, I dove into the world of clinical trials. Coincidentally, I had seen a segment on the news regarding the Novartis Freedoms II trial testing the efficacy and safety of an oral medication, and I learned that the trial was recruiting participants. I found an online screener, completed it, and was directed to a study center that was participating.  After the online screener, I received a generic “thank you for your interest” email, advising me that if my preliminary responses indicated I was eligible, a study nurse would contact me. I felt deflated, again yearning for instant gratification yet not getting it. But several days later, I received a phone call from the study nurse, and spent about an hour discussing the course of my MS in great detail. At the end of our conversation, I was one step closer as we scheduled a face-to-face appointment to discuss the informed consent, which is a huge document outlining every single side effect that had been reported, as well as what my responsibilities would include. It was a pretty scary wad of papers that my husband and I scoured through (also enlisting the help of my dad, my sister, and my mother-in-law), and came back with a list of questions for my next appointment.

This picture was taken when I was still working, and still a human guinea pig.

In November of 2008, I had my first of many appointments at The Gimbel MS Center at Holy Name Hospital in Teaneck, NJ. It was one of the very first ever comprehensive care centers for MS and it has a great reputation, particularly relating to research studies. I met with the study nurse who went over the informed consent, point by point with me. She patiently answered all of my questions, understanding of how scary a proposition it is to enroll in a research study where you may (or may not) be taking a medication that is brand new, with side effects and efficacy yet to be discovered. Preliminary results from early trials can be encouraging but still do not tell the entire story. But that November day in ’08, I made a decision that undoubtedly changed my life for the better. I consented to a two year, double blind, placebo controlled clinical trial. I knew that the possibility existed that I would be on no medication at all for two years, but they were testing two different drug dosages versus placebo, so I felt that my odds were pretty good. Instead of a fifty/fifty chance of getting the product, I had a two out of three chance. In my mind, I just knew that the universe would take care of me. 

Being in a clinical trial requires commitment. Even before I took my first dose, I had two full days of baseline testing which included visits with a dermatologist, an ophthalmologist, pulmonary exams, MRIs, EKGs, and I even had to wear a 24 hour Holter Monitor (which I told my students was recording everything going on in the classroom…and they believed it!). Additionally, I had to meet with the researching neurologist, the examining neurologist, and I underwent a battery of neurological tests (which I’m convinced are all meant as torture devices) with the study nurse. And this process was repeated every three months. As much as scheduling was often difficult because I was still working, being monitored so closely made me feel safe even in previously uncharted territory in the world of MS treatments. 

It didn’t take long before I was convinced that I was on the product and not a placebo. I am very sensitive to medications, and I am known to experience side effects, even those deemed “rare” for most patients. This was no exception! In fact, there were  times that I was forced to take a “study drug holiday” until things normalized in my system. I was doubtful that my elevated liver enzymes, or the variation of my absolute lymphocyte count could be attributed to the “placebo effect”! But I still stuck it out. I committed for a two year trial, and I knew in advance what the risks were. I could have opted out at any time, but I felt it was important to follow through. They might not have liked how my body reacted at times, but it was data that needed to be collected for the good of the MS Community.

This was a 3 month supply of my study drug. Every 3 months I had to bring what was remaining and switch for a new “kit”, even if there were pills left. They always gave a few extra just to allow for scheduling issues.

Nothing about the clinical trial surprised me, including the fact that they did not want to use me in an extension trial. In fact, they did not even want me to complete the trial with them. At month 21, the very product I had been taking, became commercially available as Gilenya, the first ever oral medication for relapsing forms of Multiple Sclerosis. I maintain that if my numbers were ideal throughout my time in the trial, I would have been asked to complete the “exit” portion, which in essence, would have sealed my numbers into the results of the trial (and also given me “free” study meds for 3 more months!). I transitioned to the commercial product, which was fine by me, because I still got what I wanted in the end: another treatment option.

This is what the Gilenya packaging looks like. It is the worst concept ever, particularly for patients who lack manual dexterity. I hope they re-visit this concept at some point! Also, it is only a 28 day supply, and runs about $5,000.

I almost jumped for joy when the packaging changed to a regular pill bottle and an actual 30 day supply!

Years later, we were “unblinded”, and as it turns out, I was on Gilenya the whole time. I learned a lot through the process, and I know it taught me more about being a “professional patient” than I ever thought possible. It’s true that my motives for enrolling in the clinical trial were self-serving, but ultimately I knew that I was also doing for the greater good. And although I am no longer on the product, I endorse it whole-heartedly because it served me well for over eight years, which is an amazing run where it comes to treatments for MS.  I was patient number 002516, and I’m damn proud of it. 

Curls

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In light of the current world circumstances, I thought this week I would bring back a light-hearted, fun post because I think we could all use it! Enjoy this entry from 2015, in which I talk about my huge head of crazy curls!

I think it’s a pretty accurate statement that no one is ever truly happy with what they have in life, and that the grass is always greener in someone else’s yard. I spent most of my life fighting against what I was given and aching for what I perceived to be society’s idea of beautiful. It seems like a petty topic to write about, but it’s really symbolic of a much bigger issue.

As a child I felt that I had inherited the worst possible physical traits from each of my parents (sorry, Dad!). My sisters were thin and small-boned, while I was chunky with thick wrists and fingers, not to mention a back broader than most linebackers. They had long, beautiful hair and I had a thick mess of a mop that my parents insisted on keeping short. Think: chubby little white girl with a big, huge Afro! I cringe when I see pictures of myself before the age of about 13 or 14 years old.

Straight hair took at least an hour and a half with a flat iron (not including drying time!).

As an adult, I spent a (not so small) fortune on the best straightening irons and products for smoothing hair, and spent countless hours fighting the curl, which in some way made me feel as though I fit in with society’s expectations. When my hair was straightened, I would inevitably get complimented on how great it looked straight, and if I wore my hair curly I’d inevitably be asked if I ever thought about straightening it. Walking through the  mall meant that the people who sold flat irons at the kiosks would harass me just for the opportunity to show me their amazing tools. If it seems as though this is a superficial topic, it’s actually a metaphor for how I have come to embrace who I am.

This was taken the day after my first “curly cut:”.

Ten years ago, I decided I had enough. Why was I wasting time and energy to change who I was? I made an appointment at a swanky salon in NYC that specializes in curly hair, and even braved a blizzard getting there.  The amazing part of this whole thing is that  my curls are oddly connected to my self esteem. Once I allowed my curls to be free, I finally felt like who I was meant to be. I mean, when have I ever followed the flock before? I got married in Las Vegas, made a decision early-on to not have children, and proudly have the healthiest marriage of anyone I know (albeit unconventional according to most people’s standards), so why was I trying to adhere to conventional ideals? When I freed myself of my flat irons, I freed myself from the pressure of fitting in and I learned to accept who I am.  Of course, I consider myself a work in progress, but this was definitely the beginning for me.   

You’ll never catch me without my curls again!

Perhaps the most valuable lesson I’ve learned from embracing my curls is the ability to focus on the positives in life rather than the negatives. I have always looked at my physical characteristics negatively because I insisted on comparing myself to those around me. So I might not have loved every aspect of my appearance, but I learned that there are parts that I actually even appreciate  now. I never could have said that before because I wasn’t open to accepting and (dare I say) liking my appearance. 

It sounds silly to say that my curls helped me focus on the good things, but they did. They are a perfect representation of my personality. They are bouncy and fun…but most importantly, they are resilient: not bad qualities to have inherited, right?

 

If you are one of the curl resistors out there, embrace what you’ve got… it makes life so much simpler!

 

Holland

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These days, I’ve been thinking a lot about Holland. Not actually, but metaphorically. In brief (for those who don’t want to read about it from the link), Holland was not in my plans or on my radar at all. I was ready to head to Paris. I did all my research, and I was fully ready to embrace my home in France. I knew all the restaurants in the neighborhood I hand-picked, all the museums and festivals I would go to, and I even started to learn some of the language.

Sadly, after making the trip, I found myself not in Paris at all, but in Holland instead. I had no idea where anything was, where I would live, the different cultural events that would interest me, and I don’t speak a word of the language because I was prepared to be elsewhere. Not that I had an opinion on Holland, just that I hadn’t planned on being there, and I panicked.

This is a metaphor for what I thought my life was going to be versus what it turned out to be. I was happily living my life as a high school teacher, MS and all. I knew that it was getting increasingly harder for me each year to be the teacher that my kids deserved, but never did I imagine such an abrupt ending to what I can only refer to as my calling. I have no regrets for the way I did my job because I don’t know any other way to do it. I was ALL in. Always. All ways. Nothing came before my kids and my school… absolutely nothing: not my husband, not my family, not even my own well-being. It was my identity and I was proud of it. I could have changed my approach but I didn’t know how. Every June on the last day, I would tell my husband that I made it through another one but I wasn’t sure how many more I had in me. I spent 15 amazing years in Paris. I wasn’t ready to go when MS said it was time.

So my MS and I moved to Holland. I wasn’t happy to be in Holland at first. Everything seemed so strange to me. I went from having everything scheduled down to the exact time I could go to the bathroom, to no schedule whatsoever. I went from being surrounded by people and activity, to spending more time alone. I went from my identity as Mrs. Rankin, with a clear-cut purpose, to Rennie… no identity and no purpose.

Adjusting to Holland was not easy. But you know what? I began to work on myself, and I began putting myself first. I learned to make a schedule for myself because there wasn’t one for me. I learned to surround myself with the most amazing people who always lift me up and remind me that I am worthy of good things, especially while I was figuring out who I was without being a teacher. Most importantly, I found purpose. It really hasn’t changed, it just shifted to a different audience, even with a little overlap from my old life.

No words needed.

This wonderful metaphor that I learned from my therapist has helped me so much as I have built my new life from the bottom up. I have a renewed spirit, a fresh outlook, and so much gratitude for everything even though life did not go according to my plan… this includes shelter in place orders for public safety. Dealing with COVID_19 is just another area of Holland that I knew nothing about, but as I’ve been here self-quarantined for 50 days as of the publishing of this entry, I have learned a ton during this time.

These are some of my regulars who join me as I guide them through a chair yoga practice every single week.

I have learned that I have all that I need and more. I have learned that connecting with others, even virtually is vitally important for good mental health. I have learned that I can still fill my days with yoga and meditation like before, and even though I’m not in the studio, I am grateful for the technology that allows all of this. I have learned that some people follow the rules for the benefit of all (for instance, a former high school teacher with multiple underlying conditions for vulnerability), while there are others who think that rules and mandates issued by the government are “stupid”, or simply do not apply to them. I am grateful for those who are staying home so that the medical facilities can treat every patient properly. I am grateful for all the disconnected activities I take part in, allowing me to exercise my brain and keep it from running overtime. I am grateful for my partner in crime, Bruce, who continues to work 2.5 jobs for 20% less pay to support our family, and I’m grateful that he still has a job that he is able to work remotely even if we have less money coming in. I am grateful to be saving mileage on my car, as well as not spending money on gas… and other incidentals that happen while I am out and about. Like Dunkin Donuts iced coffee. I am grateful for my fur babies who offer love regardless of what’s happening outside. This has become especially important as we isolate in isolation, since when we need anything, Bruce goes out to get it, and we haven’t had a two week period without him having to go out. We are distancing because I am among the most vulnerable, and he says that he couldn’t forgive himself if he gave me the virus. I am grateful for every single front line worker, many of my former students included: doctors, nurses, paramedics, EMTs, CMAs, CNAs, orderlies, longshoremen, truckers, retail workers, the USPS… all those who risk their lives every day in order to protect the health and safety of each and every one of us. Their passion and bravery is not lost on me.

A former student, a friend, a source of pride: a flight paramedic risking his life every single day. Thank you, Brian. I love you.

As human beings, we need to roll with the punches, knowing that we are capable of changing and growing despite any obstacles we face. We are innately  resilient, even if we don’t realize it right away. When I first got to Holland, I did not think I would ever be happy here. But now, six years later, I can’t imagine myself anywhere else. But I learned to trust in the universe and in my own ability to adapt, which may have been the most empowering part of this whole journey. After all, we can’t rely on anyone for our happiness because then you’re always setting yourself up for disappointment. But believing in yourself is where all of the power comes from.

Before I get too far off track here, my point is that regardless of where you are, true happiness abounds as long as you are open to it. I didn’t expect to be in Holland, but I love it here. I am happier, healthier, and so much more grateful for everything than I ever was before. Now in the midst of this pandemic, I am increasingly more grateful for the little things in life, because that’s all I really need. And you know what? The lemonade here in Holland is incredible, and my glass remains half full, as always, and COVID_19 can’t change that.

A drive-by visit appropriately distanced) from my yoga sister lifted my spirits in huge ways…