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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.

Heat Intolerance

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Now that summer is upon us, I am already mindful of the blistering heat and humidity that are par for the course living in NJ. I definitely love the summer vibe that is palpable everywhere you go, as winter coats are traded in for tank tops and Uggs go back in the closet in favor of flip flops. While I can appreciate the sentiment, summers are not easy for me due to heat intolerance caused by Multiple Sclerosis.

The sun, while beautiful, could quite literally be the death of me.

This year I am particularly anxious about it. Since my vaccination status is null due to the Disease Modifying Theraoy I am on for MS, I am supposed to be acting as if I am not vaccinated, which means no indoor dining. While summer is the time that I normally catch up with teacher friends and former students, we are relegated to outdoor visits only, which can’t happen during the sweltering weather here in NJ. So this year, I am taking the whole heat intolerance thing a lot harder than I normally do, because I am feeling isolated yet again. And to make matters worse, I haven’t exactly been able to figure out why the heat and humidity can wreak such havoc on my body, even when I am confined to the meat locker conditions that keep our air conditioning pumping all summer to maintain a blustery 64 degrees inside our home. But it does.


I spend the vast majority of my time during the summer inside anywhere that it is climate-controlled, preferably where I have control of the thermostat. While I am grateful to live in a country where air conditioning is available and with a husband who appreciates the cold air, too. This really is a necessity for me, and many other MS patients, who are deeply affected by extreme temperatures at either end of the thermometer. I wish it was simply a matter of heat making me feel uncomfortable. Or me disliking being hot. However, when I overheat, it is much more serious than that. My body begins to buzz and vibrate everywhere, from the inside. All of my symptoms are magnified, which means my tremors are exaggerated (even in my voice and my eyes), I tingle from the bottom of my feet to the top of my head, and most importantly, I suffer from  what is called Uhthoff’s Phenomenon, which occurs due to optic nerve damage. This is by far the scariest of my heat-induced symptoms because it causes my vision to get blurry, distorted, lose borders, or go away entirely. (Just a side-note that this can also happen when exercising, which is always a balancing act walking that very fine line between working hard, and over-working.). So naturally, I do everything within my power to avoid all of it by staying cool. In summer months, a look inside my bag will reveal snap and break ice packs, a mister, a hat to keep the sun off my face, and a good old fashioned folding fan.

Summer beach house with the family… private beach entrance means I can come in and out of the heat as needed.

When I was still working, I jumped through unbelievable hoops to have air conditioning installed in my classroom, which was a process that did not happen quickly or easily. The principal of my building at the time was not happy about my request, and she even told me that people who had made such requests in the past were told to get a job elsewhere. I didn’t. Because the Americans with Disabilities Act requires employers to make reasonable accommodations such as this one. It was a simple solution to maintain my ability to continue to do my job, and everyone acted like it was a gift. I often had co-workers tell me “it must be nice to have AC in your classroom”, to which I always responded I’d trade the air conditioning in a second for a healthy immune system. I would have preferred to be healthy and hot than to require this accommodation in order to perform my job.

While air conditioning is my savior during the oppressive heat and humidity, I do experience “cabin fever” as the lazy days of summer lead to autumn. I am especially worried about it this year because I have been isolating so much, and missing seeing some of my favorite people. I am just hoping that somehow we get a more temperate summer so that I can enjoy some time outdoors (with or without loved ones),  soaking up some Vitamin D, without fear of losing my vision due to overheating. Thinking back to past summers and how antsy I get by being constantly held hostage by my need to stay cool, makes thinking about this one incredibly intimidating.

I dream about the days before MS limited my time at a place I love so much.

In the long run, I always do what I have to do because I have been doing it so long that it’s all I know. The point of this whole entry is that heat intolerance is real, and many MS patients suffer from it because we can not thermoregulate like others do. In other words, our inner thermostats are broken. Just a few years back, we lost one of our own because before she realized how overheated she was, she had become paralyzed and could not even speak. She was rushed to the hospital but because she could not thermoregulate, her core temperature had risen to 107 degrees, and despite being packed in ice, she did not make it.

If you are heat intolerant, please be prepared, and educate those around you so that they can help you if need be. No one wants to see another warrior succumb so tragically and unnecessarily. Even though I have been aware of my heat intolerance for many years now, it took me  a long time to realize just how serious it can be. Now, there’s no way I could ever forget.

(RIP, Sarah.)

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**

Inclusivity

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So there is an activewear subscription box that people are loving, the price is great, and I’d love to be able to get it. There are not many subscription boxes for bigger people, and even Yoga Club Box, which I had an affiliate partnership with, stopped stocking my size… unless I wanted long sleeves (which I can’t work out in since I am heat intolerant), or tank tops, which I am very self-conscious in. I’m not going to name this box, but the outfits are adorable and I’d love to wear them. However, they are not size inclusive.

When I see their ads come up on Instagram or Facebook, I always comment about them not offering extended sizing. Usually I get a lot of likes from other people who feel the same way as I do: excluded because they do not fit into the societal standard of what the female body “should” be. I feel it’s my duty to let these companies know that we come in all shapes and sizes, and being non-inclusive alienates a large percentage of the population. I firmly believe that there is money to be made on us bigger-bodied, active women who want cute outfits just like our thinner counterparts. Once I make my comment about size-inclusivity, that’s where it usually ends.

Except this past weekend. I made my usual comment on their ad (on Instagram) and got my usual likes from others who support my reasoning. However, in addition to the usual likes, someone tagged me in a post by someone else that stated something to the effect that there is no need to extend sizing, it can just be motivation for bigger people to lose weight so they, too,  can get a subscription.  This did not sit well with me.

The post that started it.

As I rolled this info around my head for a bit, I had a few thoughts that I could not shake. One was that the other girl tagged me. I think she sees that I always comment on this company’s ads and she wanted me to see how ridiculous a comment that was. And while I normally don’t engage with people like this clearly perfect female specimen, I (after being super cranky because I had a bad MS day and I was frustrated), felt the need to stand up to this kind of mindset that is far too common among women particularly.

So this woman decided to share her wisdom, although when I asked her where she earned her degrees from she didn’t answer, especially when she said that getting smaller is “more healthier”, something this language lover ran with. She insisted that there’s no such thing as bigger frames, thicker bones, or medical reasons why someone might not be able to attain the perfect body that she clearly has. She then made it obvious to me when she said something like, “Wait are you big boned, muscular, or do you suffer chronic illnesses? I’m so confused!” I know you are honey. Because your tiny little brain can’t understand that none of those things are mutually exclusive of the other, and that none of these are reasons for a company to not be size-inclusive, which is how I ended it…

But not before she stalked my feed (which I don’t mind at all), and proceeded to talk about my “flabby body” and the “sag in my arm and belly.” Then she said “ok you do you, boo!” (which I did not appreciate but ignored because you just can’t fix stupid). Clearly not an ounce of compassion to be had, and kindness must not exist in her world.

This is the photo that sparked the comments about my flab and sags.

So I left it where I said, and told her to take good care of herself. Like I said, I normally do not engage with trolls like this, but her ignorance was palpable and I felt the need, not just for me but on behalf of the girl who tagged me and all the bigger bodies out there, to school her. I must have done well because she did not respond further. I already gave her more energy than she deserved, but I felt she needed to hear what I had to say.

Sadly, this is not an isolated incident. How is anyone supposed to make progress on a weight loss journey if they aren’t given some grace? We are ostracized for being bigger, and not supported on a journey to get smaller because people like Ms. Perfect can’t see the big picture. Just like this activewear subscription box. As a big girl, I love it when I have cute outfits to wear for working out, and it’s motivating to feel like you look cute while doing it. But it just doesn’t happen often enough because not everyone is size-inclusive.

No weight loss journey happens healthily overnight. These pictures were taken 6 years apart to the day. I will forever be a work in progress and I am ok with that.

The simple truth is that we are given this vessel that we occupy and it’s temporary. Think of a pitcher of water, a glass of water, and a thimble of water. All are different shapes and sizes. But what’s inside? Water. All the same! When will society understand this point? What we are inside is the important part. And as Bryan Kest, a famous yogi who speaks so openly on this matter says, “Isn’t it our differences that make us beautiful?”

This shirt is my affirmation that no matter what anyone says, and no matter my shape or size, I am enough.

I think so. I just wish the rest of the world could understand it too. It doesn’t take a lot to be compassionate and kind, and understand that no two human beings will have the same exact body size and shape, but neither is inferior to the other.

Sorry, “Boo”. You do you and keep your ignorant opinions to yourself. The rest of us will keep on working on ourselves while Karma takes care of you!

This is my rant to the troll.

Lifeline

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We all depend on others at one point or another. Whether it’s a significant other, a best friend, or a medical professional… without the support and care of others, it’s impossible to live a full and happy life. At times maybe we don’t feel like we can depend on certain people, or we don’t want to face the fact that we are dependent on others. But I’m here to tell you that dependence does NOT mean that you lose your independence. and when those people you count on let you down, it’s so frustrating. Especially when it comes to the medical professionals in our lives.

So as a person who has multiple chronic illnesses, I place my well being in the hands of those I trust, and since MS is what I consider my primary illness, my neurologist serves as the captain of my ship, so to speak. I must trust him/her implicitly to be on top of all the latest treatments, what’s coming down the pike, and to understand my history in order to make my future the best that it can possibly be.

On my way out the door for a big day….

After I was diagnosed with Multiple Sclerosis by a general neurologist, I made the decision to switch to an MS Specialist at a comprehensive care center. That was 17 years ago.

Initially I was overwhelmed by the thorough and personal care I received and I knew I had made the right decision. My first appointment was two hours long, and I had never experienced anything like that. The running joke has always been that he put me in a gown to examine me, which I was not expecting. My mother had gone to this appointment and was in utter disgust at my choice of underwear, as I was wearing a thong. As a teacher, you never want panty lines or anything else visible, especially when you stand in front of teenagers all day long!

Anyway, I have always been very involved in anything my MS Center wanted or needed. I would speak at events for them, including at their very exclusive wine tasting event where I spoke to the “high rollers” and we managed to get eight pledges to purchase new chairs for the infusion suite and we only needed seven. I spoke at the re-dedication of the center when we relocated to a bigger space in the hospital. Oh and also… I didn’t know I was on the agenda to speak that day but did so nonetheless because I believed very strongly that it was the best place for me (and any other MS patient) to be treated.

I’m very comfortable at the podium, speaking to the “high rollers”.

When I stopped working, I was asked (begged really) to volunteer there, as one of their volunteers had recently moved out of the area. I said yes without hesitation. And for two years, I showed up weekly for a four hour shift, where I worked my butt off. I did it to help because I knew they were growing and short-handed. I am a quick learner and soon I was answering phones, scheduling appointments, confirming appointments, and scanning papers into the system. I do believe that this was when I grew more and more disillusioned with the Center while I thought I was giving back to a place that had taken such good care of me through the years. Not only did I feel that I wasn’t getting the same level of care that I had for years earlier, I got complacent. Everything was easy and convenient. In one place I could see my specialist, get my lab work done, get my MRIs, and even get my infusions. And I kept thinking well I’ve had this disease for so long already, my history is there, and what else can they do for me at this point?

After two years of working for free (and only because I was asked), I was fired without any conversation about it. They simply kept telling me “there was no work”, which I knew was a lie, and if they didn’t want me seeing how things ran then they never should have begged me to work there in the first place. And the fact that I didn’t even get the courtesy of an explanation really hit me hard.

Additionally, my appointments no longer felt comprehensive, and I spent on average less than half of the 20 minute time slot I was allotted with the neurologist. On the patient portal I found errors in the dictation, and details I deemed necessary missing from this very important documentation, especially since I am on SSDI and they regularly ask for doctor’s notes in order to maintain my status (and income).  I found certain treatments being pushed on me that I did not want, and had to threaten to leave to get the one that I wanted. This was not the kind of care I had grown accustomed to, and I knew I deserved more.

I had been unhappy for a while, highlighted by the fact that  I kept a short list of all the best and well-known MS specialists in the area, along with their locations and phone numbers in the back of one of my notebooks “just in case”.

So this past December, when I went for my semi-annual treatment I was humiliated by one of the medical professionals who talked to me in a way that no person in that position should talk to a patient… and certainly not to a peer who is a highly educated woman. It was on that very day that I knew my time was coming. This was not the same place I had grown to know and love. I no longer felt safe or well-cared for. I no longer had confidence in the people we as patients depend upon most.

This is on the day of my December infusion, sitting on the floor stretching, and grateful for the mask that hid how I was really feeling.

And scary as it is to make a change after calling this place “home” for all these years, I know it’s time. We all outgrow things, sometimes we outgrow people, and sometimes we need to make changes to ensure the most positive result living our own reality. Staying on top of your team means that you are advocating for yourself (because who else will?) to make sure that you get the treatment and care that you require and deserve.

Just a little bloodwork to cover all the bases! (Sorry to the squeamish readers out there!)

I don’t regret not making a move sooner, because the universe has always guided me when and where to go. If I didn’t get “fired” from volunteering there, I wouldn’t have ended up at Marty’s Place Senior Dog Sanctuary, where I have been happily volunteering for over 4 years, and I’m showered with gratitude every single shift. And I needed to see clearly how drastically things have changed which only only comes with hindsight. Knowing your worth is beyond priceless and I always want the captain of my ship to see my value as well.

Three hours together, just to collect data, and an appointment in six weeks to discuss it all. Now THAT’S what I call comprehensive!

It all boils down to the fact that every single patient deserves to be treated as though they are not just a number passing through the doctor’s office. We are wives and husbands, sisters and brothers, aunts and uncles, and moms and dads. Most importantly though, we are human beings. We have feelings. And when we deal with chronic illnesses we count on our medical professionals to help us navigate the uncertain waters in which we swim. If you aren’t given a lifeline by the captain of your ship, then perhaps it’s time to find a new crew.

Yoga Warrior

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In early March, I entered into a competition known as Yoga Warrior 2021, sponsored by Yoga Journal Magazine. I didn’t think I would make it that far in the competition for many reasons, not least of which is the size and shape of my body. But the winner would earn the title, a double page feature in Yoga Journal Magazine as well as $10k. From day one, I knew that if I would be lucky enough to win that the money would be directly donated to Marty’s Place Senior Dog Sanctuary, where I have been volunteering for the last 4 years.

This was part of my profile for the competition.

I also wanted to win because yoga can be very intimidating for bigger bodied people, because that is generally not how yogis are represented. For the longest time, I didn’t practice in a traditional studio because I was too scared to walk through the doors. I knew I wouldn’t see anyone who looked like me, and I was worried I wouldn’t be able to keep up, so I practiced in the comfort of my trainer’s house, where I knew I was supported and never judged. (Below is a glance of Yoga Journal Magazine covers, none of which feature a yogi who looks like me!)

 

Additionally, I wanted to raise awareness of chronic illnesses and bring the conversations about them to the forefront. Ultimately I had the support of friends, former students, family, and perfect strangers who agreed with what I stand for. (Here is where I say thank you to all who supported me and who connected [or re-connected] with loved ones near and far, and I apologize for the daily text blast reminders to vote!).

I never expected that I would place 2nd in the quarter final round, after making it through five rounds of competition. I can’t be ashamed of placing there, as the quarter finals represented the top 1% of competitors worldwide. But in the back of my mind, unlike when I started the competition, I actually believed I had a chance at winning the whole thing, thanks to the encouragement of some of my favorite, most inspirational yogis (you know who you are!).

My final placement in the competition… if I could have made it just two more rounds…

I did a live video where I cried, not tears that I had been eliminated, but tears that there was a lot of un-yogi-like behavior among the people in my bracket, and also because I felt like I had lost this huge platform to show that anyone can do yoga, that chronic illnesses need to be discussed (and how yoga can help manage them), and the cash prize that would have been donated to Marty’s Place Senior Dog Sanctuary was seemingly stolen right out of my hands.

While the competition left a sour taste in my mouth, and I certainly won’t enter it ever again, I feel like I won. Those re-connections I talked about are real, and I treasure them. And I felt so loved and supported by my people. And I’m actually thankful for it because it had led me to bigger and better projects in the works!

This is just one example of the love I was shown… This was from a former student who is now a full-grown, married man in his 30’s, ut clearly still so dear to my heart.

I’m not sure if the competition had anything to do with it, but I was contacted by the Director of Communities of the amazing Lyfebulb. Me, being skeptical because I had a mailbox full of requests in my DMs everyday asking me to buy their “service” to get votes, I asked her what the catch was. Her response was simply “literally nothing”.

Fast forward to interviewing with her, and then interviewing with the FEMALE CEO and founder (hallelujah for girl power!), I am officially the newest ambassador, which means I can affect true change in the world of chronic illnesses and making that world more patient-centered. Holy cow! How perfectly aligned with my own personal mission!

And the title? Well screw the title. I have been living with the title of Warrior since long before I was practicing yoga. And a competition where votes can be purchased doesn’t necessarily make the winner a Warrior. Not winning the competition does not strip me of the title Warrior, which I wear proudly every damn day of my life, not just during a silly competition. The true rewards were really the connections re-established and the support of so many.

And as far as my dogs at Marty’s Place go, any opportunities with Lyfebulb that are paid ones, I have already established that those funds will be sent directly to the sanctuary. I know it’s not $10k but it’s what I can do with this present opportunity.

Marty’s Place will always have my heart and I will always do what I can for these special senior dogs.

And more is happening that I am not at liberty  to discuss just yet, but it is equally as exciting, and I’m pretty sure that putting myself out there for this competition made things happen.

It just goes to show that even when you don’t win, you really do. It’s just a shift in perspective and recalling your purpose to help you understand it. And it’s always in hindsight, because hindsight is always 20/20.

This is the true meaning of my blog… making lemons out of lemonade. I could have been sucking on those lemons when I was edged out of the competition. But instead, I am grateful for it because now my glass is overflowing with the sweetest lemonade I have ever tasted.

Cheers!

 

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!

MMJ

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Giving thought to past entries, I thought it only appropriate to bring back an entry from the past where I discuss an approved part of my treatment plan for managing MS symptoms. It may seem unorthodox to those who only opt for traditional, pharmaceutical medications, but for me, having access to MMJ has been such a blessing for offering relief where traditional medications have not. The reason I am sharing it on election day is because this year on your ballot here in NJ the public question #1 is whether or not  to approve the legalization of recreational use of Marijuana for adults. Perhaps if you have maintained a “con” attitude about it, my experience could help you see it from a different perspective.

As I thought about the pros and cons to writing this entry, the one thought I couldn’t get out of my head was what will my former students and co-workers think about it? But that’s exactly why this piece deserves to be written. Often the pain and discomfort associated with Multiple Sclerosis is resistant to medications because these symptoms are neurological and traditional pain medications do not offer relief. There is an option out there but it exists with a stigma that is, in my opinion, unfounded. 

I like to think that my former students and colleagues alike would describe me as the utmost in professionalism. I worked full time (very seldom or never calling out sick), and I earned my Masters Degree just before MS decided it was time to leave the classroom (graduating Summa Cum Laude), while I was still working. I also traveled as a patient advocate and motivational speaker, giving as freely of my time to strangers as I did to my students. I am a professional woman, who has worked her whole life, who owns a home, who has a car, who gives back to society, and who just happens to have a prescription for Medical Marijuana. 

(I’m pausing for effect here so everyone reading can just take that in.)

Yup. You read that right. Medical Marijuana is an approved part of my treatment plan, and has been for several years because luckily I live in NJ, where there is a Medical Marijuana program (MMP) in place. Does that mean that I used to go to work high? Does that mean now that I’m not working I just sit home and smoke weed all day long? Does that make me a “junkie” or a “stoner”? Does that make me a drug addict? The answer to all of those questions is “no”, and I can only hope that I haven’t shattered anyone’s image of me by disclosing this information. 

My prescription is written by a physician who has registered with the state MMP, which contains a list of approved diagnoses for which the product may be used. Even though he specializes in MS, he still doesn’t prescribe it to just anyone. There is a definite protocol that he uses to determine if MMJ is an appropriate treatment. As a patient, I am grateful that he understands that relief doesn’t always come from some combination of pharmaceuticals used for symptom management. So why, then, do some of his peers criticize him for prescribing something that is readily available and could possibly keep his patients from needlessly suffering? The irresponsible ones are the hacks (and they do, indeed, exist) who charge $500 a visit (and don’t take insurance) just to write a prescription, and they do the same thing as often as they want to when your prescription expires. 

I consider myself lucky to have a prescribed medication that eases some of my most bothersome symptoms, but it’s also frustrating at times. Because I have fully integrated the MMJ into my treatment plan, it is just like my other medications. I take my meds just like anyone else: different medications at different times of the day. This one happens to be a nighttime medication for me, because it helps to relieve the leg spasms and neuropathic pain that prevent me from getting comfortable. I don’t sleep well because of that, but it is far worse when I am not able to “medicate”. It works when I’m in NJ… But because MMJ is not a federal program, and because it is not legal everywhere, I can not travel with it. I can’t even travel with it if I am traveling to another state with a MMP or to a state where recreational marijuana is legal. Essentially, I have to choose between being able to visit my family and friends outside of NJ and the multitude of symptoms that respond to MMJ. 

Beyond that, this particular medication is not covered under my health insurance. Not only that, but the dispensary is a cash-only operation. It’s unfortunate that more people who really could benefit from MMJ can’t simply because of the price. I understand this predicament, especially since I stopped working. But if it works then you just have to make sacrifices in other areas of your “budget” (like I did) so that you can continue on the treatment plan that best works for you. 

So why am I writing this? Because MMJ carries a stigma that is completely unfair. Some of the same people that rail against MMJ have no problem with opiates (such as OxyContin) that are so readily  prescribed. These drugs have been known on many occasions to result in severe addiction and ruin lives, yet most people don’t think twice about them because they are considered “prescription medications”. Why must we suffer? Because such a large percentage of the population associates marijuana with lazy stoners and “Cheech and Chong” movies? Not only is it unfair to those who could benefit from MMJ, but I feel it is unethical. 

Put yourself in the shoes of someone suffering from a chronic, painful, and debilitating condition. Would you not try to do everything in your power to feel better? Or even just a little more human? 

*Thanks to my partner in crime for helping me get this entry right!*

Photo credit: Idalia Photography

Optimism

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It’s so hard to know what to write about during these extremely trying times, so this week’s entry is going to be short and to the point. Sometimes I feel like we are all living a collective nightmare: a country divided, a pandemic getting worse instead of better, and social issues that have been ignored for so many years. I keep hoping that we are going to wake up, breathe a sigh of relief and talk about what a horrible dream we shared. But I am, and always will be the consummate optimist and so I offer a few things that always make me feel better.

In my little quaran-team bubble are very few people. Basically we are a crew of seven who have remained vigilant since we are the only people that truly interact with each other. I am not talking about doctor appointments or quick “drive-by” visits, but the ones with whom we can spend time with indoors, free from masks, and hugs are not only allowed, but encouraged because they are the only ones we share these simple pleasures with.

My team. I would be lost without them.

Being in our little bubble brings a false sense of security when we are together. We can forget the whole world around us and focus on each other. Quite honestly, we focus on each other now more than ever and as long as everyone in our bubble is ok then we are happy. Sure, we don’t get to see each other as often as we’d like, but we treasure our time together that much more. If we lived even half an hour closer things would be better, but for now we are grateful for the love and support, not to mention the strength that we gather from each other.

The other thing that really helps me see more clearly is spending time in nature, especially at the most beautiful time of the year in the Northeast. It’s so easy for me to get lost in the sights, the sounds, and the smells of the season. It’s also a reminder that the world is so much bigger than us. It’s easy to be reminded of all the good that clearly remains when you filter out the external forces of human beings that make us feel stressed out. It is especially powerful to meditate in nature, which is one of my favorite things to do, and at this point I will do just about anything to quiet the “chatter between the ears” to give myself the time I need to re-connect with all that is good, because it makes me better able to deal with the things I can not control.

These are all images that brought me solace last week.

So during these difficult times, i encourage you all to find your true pleasures… the small things that help you find comfort, even if only temporarily. And right now, isn’t a temporary step back better than nothing?

Autumn

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Traditionally this has always been my favorite time of the year. If it seems like this entry is late to be talking about the fall, that’s because it feels like it came so late this year, and it seems to arrive later and later every year. In fact, it seems to have arrived just in the last week here in NJ, and I have been eagerly awaiting it. There is nothing I love more than the cool summer nights because it’s a sign from Mother Nature that autumn is approaching. I am constantly awestruck by the beauty of the fall. I love the colors of the leaves turning. I love the crisp fall wind. I love the faint smell of fireplaces warming up chilly homes. I love the sound of the rustling leaves. I love wearing hoodies and Uggs. In my past life, I loved the excitement of a new school year, because one of the greatest things about being a teacher is getting a fresh start every single year.

This is just one part of fall that make me so happy!

When I was little, I always excitedly prepared for the beginning of the school year. I carefully assembled my binder, making sure that each subject had the exact same number of loose-leaf pages. I had my pencil case stuffed to the max with every single color pen, pencils, highlighters, and whiteout. I could spend hours roaming around the school supplies aisles anywhere I went, just to make sure I had everything I could possibly need. I even did the same thing a few years back when I committed to Yoga Teacher Training. This excitement continued for me through my college years, and eventually through all my teaching years. I spent dollars upon dollars making sure I would have a well-stocked, beautifully decorated classroom. I spent many days prior to the contractual school year preparing my classroom so that my new batch of students would feel welcomed on day one.

All of these supplies and decorations were purchased out of my own pocket, just to make sure all students felt comfortable in my classroom.

These days,  I am more at peace during this time of year than ever before. Obviously I still love everything about this time of the year, but every year I feel less and less nostalgic about the one piece that is missing for me. My teacher friends are back in school mode, dealing with more stress than ever, and although I don’t wish it for them, I am grateful that it isn’t me. On the one hand, I ache for the days when I was anticipating the new school year. It’s a strange combination of excitement and apprehension, but I always found it exhilarating. But, on the other hand, I have this new life that I have settled into, that is so very fulfilling without a fraction of the stress that is so unfairly placed upon educators.

I still get to enjoy the colors of the season. I still get to enjoy the fall wind. I still get to enjoy the faint smell of fireplaces. I still get to enjoy the sound of rustling leaves. I still get to enjoy wearing hoodies and Uggs, and even more so now that I don’t have to comply with a dress code that does not include those items! But instead of looking forward to a new school year, I look forward to new traditions. I can tell you with 100% certainty that I love and appreciate my favorite parts of the fall even more now that I get to take the time to be fully present in the here and now. Everything seems more beautiful to me now because I take the time to truly embrace the simple pleasures in life. I even get to spend quality time with my loved ones whenever I want to (COVID aside), even though school has started because I no longer wear those blinders that kept me focused on one thing, and one thing only: my job. Bruce and I have started a new tradition the last few years by vacationing towards the end of September because it’s such a great time to head north to our favorite spot in Vermont. Of course this year we are not doing that because there is a pandemic happening, but it is a tradition that we will, without a doubt, come back to once it is safe again.

Bring me back to my happy place!

Taking a vacation whenever we want, and in September no less? It was not even a possibility that I would entertain in my old life. And even six years later, I still feel like such a rebel for all that I can do without thinking about 160 other people before thinking about my own well-being. Selfish? Perhaps. Regrets? None!

Photo credit: Jin at Fotos for the Future