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Note to Self

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This week, I  write a letter to my younger self about being diagnosed with (and living with) Multiple Sclerosis. I speak to the me that was in college, feeling awkward because for some reason, unbeknownst to me at the time, I found myself unable to keep up with the partying and social aspects that kids that age generally count on as part of the whole college experience. Without further ado, here goes!

Life is not easy. Sometimes we are thrown curve balls. Sometimes we hit them out of the park, and other times we miss entirely. I could tell you that it’s great being an adult with the freedom to make your own choices, eat ice cream for dinner, and stay up all night partying. But the truth of the matter is that choices have consequences that you’ll have to deal with somehow. I could tell you that it’s normal to burn out on the social scene in college, even if your friends are still going strong. I could tell you that the incredible, overwhelming fatigue is normal, along with the extreme clumsiness and weird visual disturbances that you write off so easily without giving it a second thought.  The truth of the matter is that you didn’t know any better, and why would you? No one at age 19 thinks that they will end up where I am now, at age 49, living with a chronic, incurable, and debilitating disease. No one at age 19 thinks that they will one day be a breast cancer survivor, and why would they? And certainly, no one at age 19 believes that her gene pool is so shallow that she would have to wade through the world of diabetes to boot. Somehow we all begin our adult lives wearing rose-colored glasses, impervious to how harsh reality can be. I wish we could all wear those glasses to shield us from the truths that exist in the real world, but at some point, you have to put on those big-girl panties and face the facts.

The biggest piece of advice I can give you is that even though you might think that you are invincible, you are not. No human being is. You must listen to your body, and be proactive about caring for it, because it’s the only one you get. If something doesn’t seem right, trust your instincts and do not hesitate to seek medical care because with all serious illnesses, early treatment is key. The world of Multiple Sclerosis is a scary one, and knowledge is one of the only things that can help it feel less intimidating. The truth is that in that world you will find a support system of friends who you consider family, only better, for the simple fact that they understand everything that you deal with on a daily basis. The most important thing you can do for yourself is surround yourself with people who exude positivity, happiness, peace, and light. Your MS will thank you because stress and negativity of any sort will manifest physically causing your MS symptoms to flare. Plus it’s so much nicer to be around people who are content rather than a whole bunch of “negative Nellies”. You are strong, but you are allowed to have moments of weakness, and it is at those moments when you can lean on the support system you have built. No one can be strong 100% of the time, and it doesn’t make you weak to express frustration, sadness, anger, or fear when you feel the need. You are, after all, only human. Just remember that those emotions are not productive and if you dwell on them, you will never be truly happy. Happiness comes from gratitude for all that you have and all that you are, and recognizing (and acknowledging) those pieces of you will always propel you forward.

My beautiful MS sisters, who came into my life exactly when I needed them most and they have not left my side since.

So live fully, despite your limitations. Live happily, despite your fear. Smile from your soul, because you are an innately optimistic person. Love with your entire being, and don’t waste your energy on those who don’t reciprocate that love. Be true to who you are, and be comfortable in knowing that you are enough. Most importantly, remember that there are no guarantees in life, and it doesn’t always follow your plans, so roll with the punches and make the best of every single day because life is fleeting… but also beautiful. As long as you are fully present you will never have any regrets. Trust me. I know these things. I have lived them. It has taken me time and reflection, plus a lot of work on myself to achieve acceptance and understanding. I did it for both of us, because we deserve nothing less.

Diagnosiversary

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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 eighteen 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 neurology 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 nor what I 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 18 years later, my coping mechanism for that kind of loss has been fine-tuned, and I have built a support system that holds up.

These women right here, my MS sisters, have never left my side, and although our initial connection was that we all have MS, we could not be more in-tuned with each other if were sisters by blood.

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.

I. Am. Strong.

For 18 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.

I would be lost without this guy, my rock, who has been at my side every step of the way, regardless how rough the terrain has been. **photo credit: Idalia Photography**

One Step Closer

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I know I’m not alone when I say that I have been deeply affected by the events of the last year. We were all ushered into stay-at-home orders and at that time so little was known about the Corona virus that we (by and large), as a collective whole, did what we had to do. We eagerly awaited news of when we could resume our “normal” lives. I don’t think any of us could have foreseen an entire year of our lives flying by with us still in the same position as when it all started, yet sadly, this is the case for so many.

I am not the most social person, but there are definitely moments I have missed beyond words. Time spent with my MS family, practicing yoga face to face with real people rather than computer screens, visits with my beloved former students, and hugs from family and friends, are just a few examples of what I long for.

I stumbled across this photo of me and one of my MS sisters, and was struck buy the joy on my face… and this was taken when we saw each other at least once a week or even more. God, I miss that.

Milestones have been missed by millions of people: birthdays, graduations, baby and bridal showers, and even weddings… I should know because my own wedding that has been planned since 2017 has been postponed twice now, with the safety of my family and friends at the forefront. By the time we celebrate (hopefully), this event will be five years in the making! If I wasn’t already married, I would have just gone and gotten married like Bruce and I did the first time. But this time it’s different. This is a celebration of life after a series of medical challenges that we have survived together and want to share that feeling with those we love, and so I will postpone it as many times as I have to, ensuring that we get the dream wedding we never had.

Once the vaccine started rolling out, I saw that it was going to be a battle just to get an appointment. As a person living with 3-4 “co-morbidities”, I became eligible in stage 1b of the vaccination plan here in NJ. At first I said I would never get the vaccine…. but after studying endlessly through trial data I found the safety profiles of both vaccines initially approved for emergency use authorization quite impressive, and efficacy even more so. And after hearing and seeing the horror stories of those who have had the virus, I came to the conclusion that I was WAY more scared of getting COVID than I was of getting the vaccine.

So I began to search and search and search for an appointment anywhere, and everywhere. Bruce’s company offered the vaccine to all their employees, and I was devastated that it was not extended to include spouses. He had to drive to Scranton, PA (over two hours driving) to get his, and it was well worth it.  I would have done the same.

Yup! We are both fully vaccinated!

Every site I went to said what time appointments would be opening up, and I had my three devices plus Bruce on his, just waiting. I would jump on and within 1 minute submit my info and was given a response that all the appointments were taken. I was devastated. No matter how hard I tried, this was the result. Finally, after spending an entire day all over the various websites I turned off all of my devices and threw my hands up thinking it just wasn’t going to happen for me, and I have already been at home this long, what’s a little longer?

This is the response I got within one minute of the site accepting appointments.

To my utter surprise and disbelief, I woke up the next morning with an email from a former colleague who had seen my frustration (I posted about it), and who knows about my medical history. I’ll still never forget her kindness because somehow, after I turned off all of my devices, she got through at one in the morning and booked an appointment for me. I cried tears of happiness because I knew that this was the first step towards resuming some sense of normalcy during this very strange time in our history.

The morning of vaccine #1 and I was so incredibly excited!

So vaccine number one happened, despite a rocky start at the location as they struggled to find everything they needed while also dealing with a crowd of anxious patients waiting for their turn. People were not standing on their marks to remain distanced, and I kept telling them to back off or get back on their line. When I finally got called for my turn, they were so apologetic, and just as I told the irritated masses, I told them I was just grateful to be there and I would have waited as long as I had to. The first dose went without incident, except maybe a little sore arm. No big deal.

This was the line full of cranky people who couldn’t just be grateful.

I finally was beginning to reclaim some of my power because of knew I was on the path to ease my anxiety and newfound agoraphobia that had begun to creep into my life during the course of the last year.

Vaccine #1 as it happened!

My second dose went so much more smoothly, and clearly this vaccination site had ironed out the kinks in the four weeks between my doses. People on line were still complaining and not on their marks, but I just kept telling them to get back to their spots and that I was just grateful to be there. I thanked all the people who were working so hard to make this happen for everyone there, because they were taking so much heat from unpleasant people. Everyone is doing their best (with very little guidance) and they deserve kindness. This is the time to be kind, not angry, especially since they had appointments while many others have not had theirs.

Second dose done!

In any event, I had my second dose and by the first week in March I will reach full efficacy. I had no side effects (except a sore arm) and the whole experience was 100% worth it. I’m starting to reclaim my power and we even have planned a date for the first week in March to go to our favorite place and celebrate. Without fear.

The proof I will need going forward, and I am so grateful for it.

I understand that “normal” is still quite far from where we are today, but where we are today is very different than where we were a year ago. And being the glass half-full girl, I have to hope that a year from now, we will be even better yet.

It’s a personal decision for each of us whether or not to get vaccinated. I did what I know is right for me, given all of my medical challenges, and also for my mental state. I also feel a debt of gratitude towards the medical science that has allowed me to manage it all and maintain myself in the best health possible under the circumstances, and I feel the same way about the vaccines that are available now. I do believe they will be more accessible shortly, and that everyone who wants it will be able to get it.

I imagine that there was always trepidation where it comes to new treatments and vaccines, but where would we be if kids were still dying from Measles and Mumps. Or when people suffered so badly from Polio. I trust the science. Hell I even gave my body to science for two years as a human guinea pig in a clinical trial. Each of us has to do what we feel is right for our own bodies (and the greater good)… and as for me, I could not be more grateful to be one step closer to “normal “, whatever that looks like.

PS. Laura, I will never forget how you helped me. Thank you for being my angel!

Retirement

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This week marks seven years since I walked out of my classroom, thinking I would return in 2 weeks, after taking treatment for an exceptionally bad MS relapse. I never imagined that 9/27/2013 would be the last day I’d ever spend at the place that was my home away from home, the place where I spent the majority of my waking hours, the place that built my identity, and the place I loved so much it actually hurt. But those of us with Multiple Sclerosis know that MS does not play by rules, it does not discriminate, and does not go along with plans that you make, regardless of how carefully laid out they might be. 

Two weeks of work neatly assembled for my substitute.

I left in pain, barely able to ambulate on my own, and full of sadness I felt at the thought of leaving my beloved students so early in the school year. I held onto hope that the treatment would work quickly and efficiently so I could get back to what I loved so very much. But like I said, MS is unpredictable, and the treatment that had helped me when I needed it most in the past let me down and had little effect on the storm brewing under the surface where no one could see.

This was the disaster of treatment that i was out for.

Little by little, as I struggled through painful and exhausting physical and occupational therapy, my return to work date kept getting pushed back, and the vast majority of people could not understand that I did not have a firm return date. I wanted a return date more than anyone, and I was so frustrated because I felt like my body was letting me down. I always worked hard to stay physically fit and active, which I leaned on in past relapses, but this one was different. I was working so hard, and not seeing (or feeling) results, sending me spiraling into the deepest depression I have ever known. I felt worthless, lost, and missing a huge part of myself because I did not know who I was if I was not Mrs. Rankin.

This is what I depended on for ambulation when I went out on disability.

The two best things I ever did for myself at that point were enrolling in a twelve-week wellness program for MS patients, and starting with a new therapist who specializes in treating those with chronic illnesses, specifically MS. In the wellness program, I met my MS family, a diverse group, ranging in age and ability, but our connection was instantaneous. I finally felt like I found a piece of me I needed to help build me back to where I was before. And my therapist mostly just listened to my cry every week for months until I finally started to feel better, but knowing I could never continue to do my job.

My 12 week wellness group.

Making the decision to apply for long term disability was one I struggled with and kept putting off thinking I’d magically wake up one day just like my old self, and my students would walk into school with me at my desk at 5:45 am as usual. Sometimes with MS things go as quickly as they come, and I wished with all my might that it would happen for me this time. But no such luck. And at the same time I was feeling a deep sense of loss and grieving the community of long time co-workers who proved to me that out of sight indeed was out of mind. It was the perfect internal storm that made me feel so conflicted.

This was the window to my world: a safe space, a sanctuary for many students, and my home away from home.

But the most amazing thing happened once I started to understand that my plan was not meant to be and that the universe had greater things in mind for me. As other friends left my side, my MS family embraced me, even with my many flaws. They were there for me (along with my many, many former students), as I fought to become strong again, and they supported me years later when I battled breast cancer, and again as I was given another lifelong diagnosis of diabetes. These are my people… my squad. They helped me find my place in the world again even when I thought I’d be lost as always.

Just 2 of my special girls who came to say goodbye as I tearfully cleaned out my classroom at the end of the year.

My plan did not work out as I had thought, but I realize now that it was never meant to be that way. In this new life, I have found a sense of freedom, the ability to fully enjoy the time I spend with loved ones without having work constantly in the back of my mind, and a true appreciation for the ability to give my body what it needs when it needs it. Looking back at where I was seven years ago to where I am now is like night and day, and even though it’s not what I planned I am ever more grateful each and every day. Even during COVID times, I still find new reasons to be grateful every morning when my eyes open to a new day full of possibilities.

Every day is full of new possibilities!

I will always treasure my days in the classroom, but I no longer get sad that I’m not there. I embrace it as a beautiful part of me and my past, and I am proud that I did it as long as MS allowed me the gift of being able to do the job the way the kids deserve for it to be done. This piece of my past is the biggest part of who I am,  and I have zero regrets when I look back.

I loved this pace with every fiber of my being.

Being able to focus on me and my loved ones instead of my students and my school has made my life so much richer, and now I get to enjoy the best of both worlds… I can listen to my body and what it needs, but I also am surrounded by the love of my chosen family: those very special students (now all young adults) who have made it clear to me that they are with me no matter how many years pass, and I feel the same way for each of them. So instead of feeling sad, I feel blessed. It took a minute, but I couldn’t ask for anything more.

This. My MS family.

PS. Shout out to my chocolate sister and best friend for riding this wave with me, even though we no longer work together. She is the one I turn to still… and the gift of her friendship has sustained me for so many years now. ❤️

The one who has been at my side from when we first started working together and who never leaves my side even though I am no longer her “neighbor”. She is my rock, my anchor, and my best friend.

As Is

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My small but mighty Rankin family…. constantly lifting me up.

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

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

These girls always have my back… my yoga sisters. We connected from the first day we met and I have been so grateful for them every single day since.

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

This woman right here is the woman i met the first day I started with my current neurologist 17 years ago. In that time she has gone from someone i called to book appointments to a dear friend and huge part of my life. If anyone who doesn’t have MS understands it, it’s my sweet Riri.

Often times when we have plans, I say that I am a “game day decision” because I never know how I’m going to feel. And if I should happen to miss an event, I am accused of being purposely “absent” because I do attend other events. Unfortunately, MS does not care what things happen on which days, and frankly, MS simply does not play nice! I don’t use it to “get out” of things, but I do realize how it limits me. I know which scenarios are doable for me, and which are not, and nothing hurts more than being interrogated about not attending an event or having loved ones question my intentions. Of course I want to do everything all the time but sadly, my body won’t let me, and when my loved ones don’t understand that, it sends me into a tailspin.

My big sister and constant cheerleader, always looking out for me.

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

These are just some of former students who remain in my life and have always tried their best to understand and to learn about what MS does to a person. I love them all beyond words.

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

This guy has been by my side through it all and has never wavered. I owe everything I am to his love and support. PS.This picture was taken on the night I finally got brave enough to dine outdoors.

Now I only surround myself with people like Bruce who never make me feel anything but whole… a human being not defined by my diagnoses but rather by my strength of character, accepting me as is, no questions asked. Never do I have to explain “why” because the people that matter already know the answer, and they love me anyway. I am beyond justifying it or defending myself, and with my peeps I never have to. Even though my inner circle may have gotten smaller through the trials and tribulations of life, it offers me more strength, support, and love than I ever thought possible.

My chocolate sister, and the my best girl.. we are so deeply connected that we often complete each other’s sentences.

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

Here are just a few of my special MS sisters. We are united by the MonSter but our relationships are so much deeper than just that.

Dear MS

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I’ve spewed evil thoughts about you through the years, I’ve cursed your existence, not just in my life, but in the lives of all those affected, and I’ve fantasized about a world (and my life) without you in it. And here I am, looking back at my life knowing what I know about you now, understanding that I have been spending time with you since 1992 even though my official diagnosis came in 2003. There are things I want you to know, so here is my letter to you. It’s not exactly a love letter, but at this point it isn’t full of hate either.

You came along at a point early in my marriage, when things weren’t so hot. Neither of us was certain that we would last and we had our fair share of marital problems. But through the onset of my symptoms (which were more pronounced than anything I had experienced before), and the endless testing and doctors’ appointments that led to my diagnosis, you made us stronger. You drew us closer to each other than ever before. You made us see what matters most in a relationship, and you helped us re-prioritize our values. For this, I am endlessly grateful because without Bruce, I am nothing, and without him, I would not have the strength to deal with your constant need for attention.

This is my husband, my partner in crime, my best friend, my soul mate, my care partner. Basically my everything.

With the exception of the one relationship that matters most, you changed all of the other ones that existed in my world at that time, and not in a good way. You made people look at me differently, question my reality, and walk out of my life because they didn’t know how to act around me. Sadly this behavior has not changed, and after every relapse my support circle gets smaller. But without you, I never would have found my MS family, or realized the strength of support my little circle offers me. Without you, I wouldn’t express my gratitude to them as often as I do because it’s so important that they know that I appreciate every aspect of who they are and what they offer me, especially when I need them most.

This is my amazing MS family, and I am forever grateful for all that they give me.

You took away my ability to do simple things because of neuropathy, heat intolerance, vertigo, “fumble fingers”, tremors, spasms, bladder issues,  daily pain as well as “painsomnia”, and the list goes on. You forced me out of a career I loved far before I was ready to give it up. But in exchange, you gave me the ability to listen to my body, learn my limitations, and focus solely on me and my health. It’s a gift I never take for granted, and one that has improved my life in huge, wonderful ways.

The dangers of cooking with MS neuropathy… not realizing you burned yourself until much later!

You made me learn everything I could about a disease I knew nothing about until I had to. You made a girl who struggled with science learn more than she cared to about the brain and central nervous system. But because I learned so much, I have been able to educate others, including my students when I was working, my colleagues, and ultimately hundreds of others as a patient advocate speaker. You, MS, gave me my voice and you made it more powerful than it ever was without you.

Here’s me, spreading awareness and speaking to the high rollers at a very exclusive wine-tasting fundraiser.

You put me through the endless cycle of weight loss and weight gain thanks to your relapses that require high dose IV steroids, causing me to balloon up, and then leaving me with the daunting task of getting back to my “normal”, when you take more and more of my function every time. And because of that, I learned how to meditate, do yoga, and workout with a trainer who is passionate about helping MS patients. I am not going to lie and say I have great body image, but I’m learning how to accept my reality and be proud of the small accomplishments regardless of how small they may seem to others. I have learned to change my mindset and I exercise to maintain my strength, not to be skinny. I understand that I am a work in progress, and I will be for the rest of my life.

You have not managed to break my spirit, take away my ability to love and be loved, or change who I am fundamentally: the glass half-full girl. You have not made me ask “why me?”, because I think “why not me?”. Your presence in my life has helped me see more clearly, laugh more freely, and love more deeply than I ever thought possible. While other patients might write you a letter full of anger, resentment, and spite, that’s not how I roll. This letter is one full of gratitude for all that I am and all that I have despite it all. I am now and will forever be thankful for these lessons I have learned, no matter how difficult the road to learning them has been. Some people live an entire lifetime without knowing what I know now, so how could I possibly be angry? Life is what we make of it, and no matter how hard the journey, if you stop to appreciate all that you have rather than dwell on what you don’t, then you can join me in a life that may not be what you had planned, but is still overwhelmingly beautiful.

Admiring the beauty all around me is something that has only happened in recent years, and by far it’s one of the greatest gifts MS has given me.

 

Diagnosiversary

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In preparation for my blog this week, I decided to read what I had written about my diagnosiversary in past years, 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 17th anniversary of my diagnosis of Multiple Sclerosis, I would have written the same exact thing I shared last year (which I shared from the year before, and the year before that) 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 17 years ago. It doesn’t matter how much time passes, telling the story immediately brings me back to that moment in time, so here’s what I have shared in years past. Nothing has changed about that day, except year 17 has brought many challenges, namely a diabetes diagnosis and the COVID_19 pandemic, but it has also brought many more rewards for which I am grateful every single day. So here’s what you go through when you are diagnosed with a chronic, progressive, and debilitating disease.

I am so grateful for all that my body can do despite living with MS likely since the early 90’s, having a fused spine, being a breast cancer survivor, and also living with diabetes.

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 [seventeen] 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 neurology 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 nor what I 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 [17] years later, my coping mechanism for that kind of loss has been fine-tuned, and I have built a support system that holds up.

These women right here, my MS sisters, have never left my side, and although our initial connection was that we all have MS, we could not be more in-tuned with each other if were sisters by blood.

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.

I. Am. Strong.

For [17] 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.

I would be lost without this guy, my rock, who has been at my side every step of the way, regardless how rough the terrain has been. **photo credit: Idalia Photography**

 

 

Wedding Interrupted

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April 17, 2020. It was the 20th anniversary of when Bruce and I first said our “I dos”, just the two of us, at an adorable little chapel in Las Vegas. It was also supposed to be the day when we finally had the wedding of our dreams surrounded by our loved ones. Postponing this day (after over three years of planning) certainly is not the hardest thing we have endured… I mean he’s been there through it all with me: MS, the broken back, breast cancer, diabetes. We were so looking forward to the celebration of love and life spent with the ones we hold most dear.

So in love with this guy….

We spent some time in the afternoon taking pictures for our re-save the date cards, which was pretty monumental because for the first time in 32 days I actually put on clothes other than yoga clothes, wore makeup, and looked somewhat human.

Probably two weeks prior, an incredibly special friend (shout out, Coll!) suggested we have a zoom toast to mark the day, we took it to heart. We set up the call, and the response blew me away.

Me and my girl Coll in what has always been the typical photo pose for us!

So many of our friends and family dialed in to the call to share a toast with us at 7 pm, which would have been the time that I walked down the aisle to re-commit myself to the love of my life.

If you’ve ever been on a zoom call you know it can be a little crazy, and we couldn’t even see everyone who was there because we were scrolling between multiple screens. I was overwhelmed by the love and support from everyone there and it definitely gave me a renewed sense of spirit that I desperately needed to make it through this period of isolation.

So many loved ones….

And even more….

This entry is simply one of gratitude and appreciation for all who joined us. We couldn’t acknowledge every single person there, but know that we saw you and we felt your presence, even though it was virtual.

The hard core participants who wanted to be the last ones on the call!

I have always believed in universal signs, and this was a big one. We are ready to celebrate in person when we get to the other side of this pandemic and return to some sense of normalcy.

I’ll be ready to collect all the hugs at our re-scheduled wedding, if not before. Never have I appreciated a group of people more than now, and I just wanted to say it publicly. If we learn nothing else from being isolated from each other, let it be to never take life and love for granted. I sure won’t.

Because air hugs just don’t cut it in my world.

PS. Get ready for an epic celebration next year at this time! Guaranteed.

Quarantined Birthday

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April is generally one of my favorite months of the year. It is full of happy celebrations, including my birthday, Bruce’s birthday, and our wedding anniversary. Plus winter makes her exit, and spring does it’s thing, beautifully decorating our world with the blossoming trees and flowers that lie dormant during the winter months.

This year everything is different as we find ourselves in the midst of a global pandemic and under a shelter-in-place mandate. My husband and I take this very seriously, as I am among the vulnerable, being immuno-suppressed due the treatment I take for Multiple Sclerosis as well as having the underlying condition of diabetes.

A FaceTime birthday celebration with my MS sisters.

We take it so seriously, in fact, that we are trying our best to social distance at home because when we need any supplies at home, he goes to the store while I remain at home. We don’t know who he could be exposed to while out so we sit at opposite ends of the couch and we are sharing our space very carefully. If he is exposed he would likely rebound rather easily while I could end up in the hospital fighting for my life.

Yoga and meditation have been my saving grace.

So I celebrated my 48th birthday feeling further isolated even in isolation. Bruce worked all day while I did yoga and meditated. I loved the birthday messages from near and far, and even had a few FaceTime birthday calls that definitely lifted my spirits. But still, although I am so very grateful for the technology that allows for virtual interaction, it could never be a replacement for the in-person, in real life, face-to-face hugs and celebrations that we all deserve to have on special occasions like our birthdays.

If you are a regular reader of the blog, you know that we had already postponed our wedding, which was to be on April 17th, and Bruce’s birthday will be celebrated in the same way as mine was.

My beloved Rankin Family singing happy birthday to me.

What’s most important is that we are safe and healthy regardless of the chaos happening in the world right now. I can only hope that this situation will make all of us just a bit more grateful for things like hugs, holding hands, and quality time spent with loved ones when things start to normalize. Those are the things I have missed the most.

So here’s the plan: let’s never take those things for granted ever! And everyone who has a birthday or any milestone event during this era of COVID-19 gets a do-over… a time to be together and appreciate those we hold dear, because there is nothing more important than that. Nothing.

I wore my birthday girl tiara all day (because I could) and I am so grateful to Bruce and the many others who tried to make my birthday as happy as possible during these chaotic times.

Be healthy. Be safe. Stay at home. Wash your hands. And know that we will get through this together, we just have to remain patient and vigilant.

PS. Check on your loved ones. Make sure they are ok. And stop hoarding toilet paper!

COVID-19

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We are living through a most historical time together. History is not always good, but it teaches us how to move forward appropriately once we have the benefit of hindsight.

Just one week ago, we could never have imagined how this global pandemic would blow up so quickly, the likes of which very few people alive have experienced before.

As someone who is immuno-compromised, not because of my Multiple Sclerosis, but because of the treatment I take which suppresses my overactive immune system, I have been riddled with anxiety since this whole thing started. I also have another underlying condition since I am diabetic. I have always been very careful about germs, hand-washing, and social distancing, but the elevation of the coronavirus has made my OCD spike to levels that I have never experienced.

How I cope with stress…

Last week, my husband’s company ordered a company wide work from home situation, and I commend them for being proactive in these uncharted waters. And being who he is, Bruce put me on home confinement with very few exceptions.

I will not be going to the yoga studio, to any stores, or anyplace that I might have a hard time distancing from others this making me more open to exposure, and he is taking great precautions when he goes out so that as soon as he gets home, he washes his clothes and disinfects himself to limit any possibility of him possibly infecting me.

While all this is stressful enough, I also have to consider my upcoming wedding on April 17, and whether it is prudent to go forward with the celebration at this time. We have been monitoring the situation very carefully and at this point we have notified all of our guests that we will be making a decision by the end of this week to see where we stand.

Necessities.

As much as I’ve looked forward to this wedding that we have been planning for over 3 years, I can’t make a rash decision that will put me and many of my guests at risk. We have some “elderly” guests, plus a slew of MS family who I need to protect at all costs.

While postponing this wedding is not the ideal in my world, especially since I have been waiting well over 20 years to be a bride, the well-being of my loved ones is so much more important.

I am working on my Plan B while I’m safe within the confines of my home, live-streaming yoga classes, washing my hands incessantly, and meditating like crazy to stay calm.

My saving grace: meditation and yoga!

I’m begging my readers near and far to do the same. It’s better to be vigilant now than have to pay the price later. And it’s such a small thing to ask! Just stay inside so this thing can be contained, hopefully infecting the fewest amount of people possible.

Life is too precious to gamble with, and that’s why I’m being extra-cautious… for me as well as for my loved ones.

And I know that whenever my wedding happens, it will feel so sweet to have all my favorite people, happy and healthy, at my side celebrating not only our marriage, but also that we all made it to the other side of COVID-19 without incident.

Ps. Wash your hands!