Tag Archives: support

Affirmation

Leave a reply

Once upon a time I was a yoga drop-in junkie. I went everywhere and anywhere to any studio that offered the first class for free. Yoga memberships are not cheap, and I never would have the money to have one due to the fact that I live on permanent disability.

Then, back in late 2017, I was offered a scholarship at a local studio. While thrilled beyond belief, it was also a bit intimidating. When you drop into a class, you have the comfort of knowing that regardless of how the class goes, you will likely never see any of the people in class with you ever again.

So when I walked into “my” studio to take my first class, I was scared. I didn’t know what to expect. My stomach was in knots as I approached the studio and set myself up in the very back corner of the room. All around me women were gathered, mostly moms (which I’m not), mostly high class (also which I’m not), mostly in adorable yoga sets (not leggings and a t-shirt like me), and no one was overly welcoming. It seemed very clique-ish. And as I sat there thinking well that’s fine, as long as I get a nice class in, one bright, shining soul approached me with a big smile to say hi, tell me her name, how long she had been practicing, etc. I am so grateful for Suzette because her warmth made me feel not so awkward, and when other people saw us chatting, they seemed to follow her lead, at least on the surface.

This is the first selfie ever of me and Suzette, taken after one of the classes I taught in studio.

When I first started teaching chair yoga at the studio, Suzette NEVER missed my class, in studio OR when we began teaching remotely. She has always been so supportive and I’m so grateful for the studio that brought us together.

Now that I am no longer with the studio, we practice together several times a week, and have even managed some outdoor lunches when the weather has cooperated. As I continue my yoga studies, she is always willing to be my “crash test dummy” (as I call it) and she gives me great feedback whenever I need it. Suzette is my constant yoga partner and we also happen to be kindred spirits. It’s amazing how the universe brought us together that way.

Back in October, Suzette and I were getting ready to practice, and I decided to start our practice with an affirmation. We repeated it 108 times together, using Malas to count them. Then I integrated the affirmation into the class so it was all we could hear besides our own breath. We did this with our practice for a few days, and when we got to one that was very strong and resonated loudly with both of us, Suzette suggested that we repeat the same mantra together every day for 30 days. I thought it was a brilliant idea, and so on October 15, we began our journey. (Just as a side note, 108 is a sacred number which Vedic culture viewed as “a number of the wholeness of existence”.)

This is one of the Malas we used during the past 30 days, and also happens to be the one that my yoga teacher gave me when I graduated with my 300 hours of Yoga Teacher Training.

Every day, whether we practiced together or not, we at least FaceTimed and did our affirmations together. We had also decided to journal each day about how we were feeling, or any of our thoughts relating to the affirmation. Before each session, we took turns reading our journal entries from the day before to each other. Each day it became more and more obvious that the repetition of this affirmation was affecting our thought processes and re-wiring our brains to believe in what we were saying.

Virtual practice and affirmations together!

When I began writing this entry, I went back and forth about disclosing what the affirmation was, but in the end, I found it too personal and also a sacred oath between the two of us. We are all spiritual beings living the human experience, and as such Suzette and I are constantly striving to be better, to work through the crap life hands at us, and to accept ourselves in this temporary vessel we inhabit during this lifetime.

This was one of the beautiful days when we did our affirmations together in person after a 6 hour lunch! (Seriously we talked for 6 hours as if it was nothing!) You can see a different Mala on my neck in this picture.

Back when I was a teacher, I always told my kids that repetition was the key to learning anything, and now I believe that more than ever after 30 days of repeating this affirmation 108 times.

Some may read this and think it’s a little “hokey” or “out there”, but the mind is incredibly powerful. According to the English American Dictionary, when applied to the spiritual life, an affirmation is a statement of truth which one aspires to absorb into his life. Affirmations are dynamic and practical — not wishful thinking.

If you question it at all, I encourage you to try it. The power of your own mind might just surprise you.

CTCS

Leave a reply

CTCS is a term I coined myself, comparable to PTSD. In my world, this stands for Concurrent Traumatic Covid Syndrome. It can’t be post traumatic because the trauma is ongoing. It definitely has happened because of COVID. And the effects are very real, and I think it’s safe to say that I will never be the same person that I was before.

I wouldn’t say I am an overly social person in “normal” times, but I do enjoy regularly spending time with my small circle of loved ones. This has been vital to my spirit since I stopped working. I went from interacting with over 160 students plus colleagues every single day, to interacting with no one. When I left my job I was lucky enough to maintain relationships with so many students, and I also was blessed to find a very special MS family as well as a strong yoga community. And while I do enjoy my alone time, being around my loved ones definitely sustains my spirit and fills my heart.

Recently I was super excited for a very special event that had been postponed due to the pandemic, and was a celebration for someone incredibly important to me. We had been eagerly discussing it for so long, and I couldn’t believe the time had come. Along with it, however, came a fair share of anxiety, given my vaccination status.

Pre-event selfie to show how perfectly my mask matched my dress!

I listened to the guidance available at the time (and my MS Specialist), and got my vaccinations in January and February. When I reached full efficacy in March, it was so liberating. Not that I acted recklessly or changed my behavior much, except dining indoors twice. Then I came to find out that because my immune system is suppressed (as is typically the mechanism of action for many MS treatments) my body did not make ANY antibodies against the virus at all. None. Tested three times to be sure, and yet still… nothing. This changed everything for me because as everyone else started being able to socialize and get back to some semblance of normal life, I had to retreat back to quasi-isolation.

But this event was too important for me to miss and so with Bruce by my side and my big girl panties on, we drove over two hours to celebrate.

As we sat waiting for the event to begin, I started to feel my anxiety rising. I got the cold sweats. I started shaking. I was hyperventilating and nearly paralyzed with fear. It was an all out panic attack.

Bruce dragged me to a spot where he felt the air conditioning pumping and told me to look around. At that moment there was no one around us. He knows that crowds are often a trigger for me even in non-COVID times… and mask-less  people inside when I have no defense mechanism in my body have made this a million times worse.

With tears pouring down my cheeks and barely able to move, Bruce managed to get me to the car even though I was holding his hand in a death grip, slicing his fingers open with my rings. If he wasn’t there, I’m pretty sure I would have been curled up on the floor in the fetal position. As it was I was so thankful that no one saw me in this state, because the last thing I wanted to do was take away from the joy of this celebration.

I am so grateful for my other half, who always takes the best care of me.

The point is, many who are prone to anxiety are having more issues than people know about with the uncertainty of the future and COVID cases on the rise again. Mental health is extremely important, and that’s why I’m talking about this even though it’s also very private and personal.

I’m here to tell you that mental health issues are as real as those related to physical health and we all need to recognize that everyone is affected differently, especially given the current public health situation.

We all have our own comfort level and we all need to be respectful of each other’s boundaries. I tried my hardest to make myself comfortable in the situation I was in, but I just couldn’t do it.

I was so upset that I missed this event that I had been anxiously awaiting. And I was mad at myself that I couldn’t do it. And then, with some distance, I realized I couldn’t be mad at myself for something out of my control. I can’t get mad at myself when I have an MS relapse, and similarly, I can’t get mad at myself for having a panic attack.

Luckily the family was very understanding of what happened and hopefully I will get to celebrate this event with them on a smaller scale at some point when things are safer for me. I still felt awful about it (and continue to do so) but in the moment there was nothing else I could do.

The moral of this story is that we need to talk about mental health and we need to take it seriously. These are trying times. Be kind to others. Protect each other. Check on your friends and loved ones to make sure they are ok. And most importantly, take care of yourself because you can’t pour lemonade into anyone else’s glass if your pitcher is empty.

Heat Intolerance

Leave a reply

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

Leave a reply

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**

Depression

Leave a reply

Sometimes in life, we find ourselves in a place we are not accustomed to. I’m not talking about a physical space, but rather the space which occupies our minds. For this glass-half-full girl, it is very difficult when my mind wanders off the sunny path I usually follow.

This is the usual sunny path I follow.

People with chronic illnesses are definitely more subject to suffering from depression than your average, healthy person, and many of us do take antidepressants to help us manage the weight of it all. But even with medications, there are times when depression can overtake us, and that’s ok. One of my MS sisters told me she “doesn’t live there but she visits on occasion.”  I love this analogy because it makes me feel like it’s ok, especially because I so strongly believe that as human beings, we need to experience the whole range of emotions in order to appreciate everything in our world.

My beautiful, kind, understanding, and loving MS sister, Mary and I always have conversations like the one that inspired this entry.

For me, my frustration has been building since I self-quarantined ahead of our state’s mandate to do so. From March until June, we were also social distancing at home since Bruce was going out to get what we needed, and since I am highly vulnerable, we thought that we couldn’t be too careful. We kept ourselves distanced until halfway through June when I actually left the house to take my twice a year infusion for MS. Although I am generally all for staying home and relaxing, it’s quite different when your vulnerability inhibits your actions and behavior. When it’s not really your choice anymore, things become harder to handle and frustration sets in. With no end in sight and being away from all the people I love, added to the divisiveness of our country and the social injustices brought to the forefront pushed me into the land of depression. I tried to keep it at a minimum by throwing myself into yoga At least twice a day (so thankful for Zoom!) and meditating at least five times a day. It was all I could do to keep my mind off the reality of the unprecedented times that have been enveloping us.

My at-home yoga practice has helped me survive these dark times.

Plus a solid mediation practice too.

Not being able to see my squad during those times was so hard that I feared I’d be visiting the land of depression for way longer than I cared to, and longer than I ever had stayed before. But these times are different than any other ones that any of us have ever lived through in the past, and so I realized  I had to grant myself some grace and allow my heart to feel what it needed to feel. I cried when I wanted to, and laughed occasionally, I also spent time away from social media and the news, finding disconnected activities to do daily. No one can argue that these are some weighty times. Everything seems heavy and we sensitive souls feel like we are carrying the weight of the world on our shoulders.

This is my MS family, the leaders of my squad, the ones who REALLY get it.

Trying not to focus on the above, I have always struggled with the relationships In my life that have changed, for reasons I don’t understand but I am working hard to accept. I generally find comfort in my MS sisters, but because we were unable to see each other like we used to it was only recently that we were finally able to spend any quality time together. We saw each other last week (but no hugs) at an outdoor lunch. All of these things together have been adding to the weight I’m carrying that is diametrically opposed to who I am. I mean I cried for six hours the other day, which is so NOT me, especially considering that I often can’t cry even when I want to, thanks to the antidepressants that usually help maintain my emotional stability!

I recognize this place, as I (like my MS sister) do visit occasionally. While I am here, I take note of all of my feelings: the good, the bad, and the ugly, so that I can further appreciate all of the amazing things that I am blessed with when I leave. And I always leave, knowing full well that it’s ok to come back to visit, but it just isn’t where I live.

I love my Mary so much, and luckily we both have the same attitude. Visiting the land of depression is natural, but living there would be our downfall.

Vacation

Leave a reply

Hello beautiful readers! I am on vacation with my family, but I will be back with fresh content on September 8! In the meantime, enjoy some beautiful pictures of the beach! Please, everyone… stay safe and wear a mask! “See” you in two weeks!

I got up for sunrise yoga but I was a hair too late!

Cotton Candy skies at sunset…

Family dinner!

Newly Diagnosed

Leave a reply

This week someone I used to know a long time ago, who remains a Facebook friend was admitted to the hospital with symptoms that brought me back to the onset of MS symptoms that led to my diagnosis. I was not surprised when her diagnosis came, and I remember the feeling of reassurance having an actual diagnosis, combined with total and complete fear of the unknown. I’m happy that we have remained in touch enough that I felt comfortable enough to reach out to her, and she told me that she was going to reach out to me.

This image shows a healthy nerve on the left, and a nerve with the myelin sheath surrounding the nerve having been attacked by MS on the right.

I’m coming back to her later but first, let me tell you about another MS patient I know. This  other girl is someone I don’t know too well, and she’s probably 15 years younger than I am. I was asked by a mutual friend to reach out to her upon her diagnosis, which I did. But she never responded. Her social media is filled with images that include pictures of her smoking cigarettes, eating fatty, fried foods, drinking multiple coffees (that appear to be cream with a splash of coffee) a day, MS memes, etc. Never is there a post that indicates that she is doing anything within her power to make her situation better. I’ve often thought about “unfollowing” her, but I just don’t care enough to do so. This is someone who lives with Multiple Sclerosis, but has quite clearly resigned herself to the fact that she can’t improve things (even slightly) with little tiny changes!

Just some of the more common symptoms an MS patient might have to deal with.

Now back to my friend… she was still in the hospital when we began communicating over our new-found “friend” in common. She was already researching different diets and asking me questions because she is determined to live a full, happy, and healthy life despite MS. She had questions about symptoms and how to know when to push through, and when to not. We talked about treatments and relapses, and she’s trying to get a solid education because she is scheduled to see an MS specialist, which is ALWAYS an advantage if it is a realistic possibility.  She has already ordered a diet and symptom journal, which was one of my first recommendations to her. I also told her to not overdo the researching thing because the amount of information out there is vast. There are differing schools of thought, and things can be very overwhelming when you are still dealing with the actual diagnosis itself.

Questions, questions, questions. Its all a journey and some questions will never be answered.

Comparing these two women absolutely blows my mind. On the one hand, I have a woman who wants to know everything she can and do anything within her power to make the most out of the hand she’s been given. She wants to be well and intends for MS to interfere as little as humanly possible where it comes to living a fulfilling life, MS or not. On the other hand, there is the other girl, who clearly knows very little about her own condition, and would rather snap pictures of people parking illegally in handicap spots than taking care of her own health… and who had a resource (me) willing to help her navigate these unfamiliar waters and chose to ignore it.

I told my newly diagnosed friend that it sounds terrible to say, but if you’re going to get MS, we are living in a great time for it because there are so many treatment options, unlike when I was diagnosed and I had four choices, all self-injections.

So any treatment options… but no cure.

The lesson of the blog this week can be applied to anyone: MS, chronic illness, or perfectly healthy. Taking care of your body is so important because it is an amazing machine that does so much for us. I give full props to my friend for being able to put aside her emotions and gather information she needs in order to adjust her life accordingly. We all need to do that not only with chronic illness, but as we age as well.

Growing older with MS is doable, because I have my guy, my MS family, and all the resources I need.

Life with MS is not perfect. But with the right attitude and support systems in place, it is still a beautiful journey that should never be taken for granted.

Marty’s Place

Leave a reply
Almost two and a half years ago, I began a new adventure in my passion for volunteering. It’s a very special place, and I began researching it long before I actually started, when I saw the writing on the wall where I was volunteering at that time. I had been volunteering at the MS Center where I am a patient, at the request of the medical director, who just happens to be my neurologist. For two years, I happily drove the 23 miles each way every week, to make things even a tiny bit easier for those who have cared for me for so long. As much as I would have liked to increase my hours, I knew that I was not physically able to do so. When they finally hired a full time certified medical assistant, I saw that I no longer was needed, although I would have been happy to continue on as needed to cover vacations and sick days. Unfortunately no one ever bothered to have a conversation with me about my position, and instead I continued to show up. One day, upon arriving, I was told I was not needed and I should go home. I was irritated on so many levels that I began my search for a new volunteer gig. You see, since I am no longer working, I feel that it is my responsibility to do good for others. It keeps me productive and useful, and it feeds my soul.
So on the day I was sent home, I decided I would seek “work” elsewhere. I mean when someone (Like me, for example) is willing to work (and work hard!) for free, and instead of appreciation she is given the brush-off, it kind of sours the experience. Then I found Marty’s Place, which is a sanctuary for elderly dogs, who in their golden years find themselves without their human, perhaps because they died or entered a long term care facility where their four-legged family could not be with them. I downloaded the application, super stoked at the possibilities…. but then breast cancer happened so everything in my life took a place on the back burner.

Morgan is always a big hit with visitors to the sanctuary. She is pretty blind and also kind of deaf but she is such a sweet soul.

Fast forward about six months to when I finally started my new “job”, after completing the orientation a few weeks prior. Let me just tell you that there could be no better fit for me to volunteer my services. Think of an assisted living facility, but for dogs. It’s bright and clean, and each dog is loved and cared for according to his or her own needs. They even do aqua-therapy with some of the dogs in order to ease medical conditions that benefit from this kind of activity. This is not a shelter, it is a home. My job is to hang out with the “residents”, playing, belly-rubbing, loving, hugging, walking, and feeding them. At one point on my very first day there, as I was on the floor snuggling with three different dogs, I remember looking around and feeling overwhelmed by the goodness in it all. I told the other volunteer (as this place relies heavily on volunteers and there are two volunteers for every shift) that I couldn’t think of a better way to spend a day. I was surrounded by love and gratitude. When I leave after my shifts, I always find myself smiling uncontrollably, even if the walks are rainy, snow-filled, or brutally hot and sweaty, and I smile like that the entire car ride home.

This is Wendy… a small girl with a big mouth. she is irresistible!

If you are a regular reader of the blog, you know that I am a firm believer in the universe and that things happen just as they are supposed to. I believe that I was meant not to volunteer my time at a medical office, scanning papers, answering phones, and talking to other MS patients, but that my compassion could be put to better use taking care of truly helpless beings who only want to love and be loved. The kicker is the name: Marty’s Place. Having had my own little Marty made me even more aware of the universal connection.

Cocoa is a beauty and one of the ambassadors who you will always see at public events because she loves everyone.

As much as I’d love to be able to put in more time than a few hours every week, I do know my physical limitations, so I know that I am doing as much as I can manage. Plus I’m pretty sure I have enough love to give these dogs to sustain them until the next week when I return. These animals are never nasty or demanding, they don’t get frustrated when things don’t go their way, and they greet everybody with a tail wag. I’d choose to spend most days with dogs over people anyway, and I won’t make any excuses about it. I have a sign in my house that says “Dogs Welcome, People Tolerated”, and a T-shirt (in three different colors) that says “Dogs (because people suck)”. Need I go on?

Big Buddy boy… over 100 pounds of pure love.

 

Tattoos

Leave a reply

RrI never thought I’d be the kind of girl who gets tattoos. Where I grew up it was not something you saw much of, or perhaps the time period had something to do with it. After all, I am a 70’s baby, and I’d even go out on a limb to say that it was more common to see someone smoking weed than walking around all tatted up. I got my first tattoo pretty spur of the moment on an anniversary trip with my husband. We both got one… and then spent the rest of the day cracking up, wondering who the heck we were! It’s very small, but full of meaning, and I’m so glad I didn’t just get random tattoos when I was younger that I might come to regret.

Husband and wife tattoos, which we got on our 16th wedding anniversary.

My next foray into being tattooed was not my choice. When I was diagnosed with breast cancer, before beginning radiation therapy, I had what is known as a “mapping session”. At this appointment, they lay you out on the radiation table, adjusting every aspect of the tilt and even down to how you position your head and how you hold your hands. They line everything up so the laser beams aim only at the area to receive radiation, avoiding the heart, lungs, any vital organs really, and even the other breast. Once the radiation oncologist approves (with the use of scans and computer technology) of your position, they give you tiny little tattoos to be used for lining you up exactly the right way for your treatment. I think I have seven on my back and three on my breast. They are so small and hard to spot if you don’t know what you’re looking for, and they simply look like blue freckles. I am grateful for them because they allowed the radiation therapy to hit the exact spot(s) where my cancer was, without endangering any other parts of my body.

This is the machine that I spent every single day on for six weeks of my life.

So one day last week I was on a breast cancer support group online, and one of the ladies was inquiring about having these itty bitty tattoos removed. I was very taken aback by this because although I know we all have our insecurities, but for someone who has fought and beaten breast cancer, it seemed such a vain and unimportant detail. I did a little bit of stalking and I learned that this woman is five years older than I am, and seemingly has a lovely family, which made it all seem so much odder to me. Other women in the group were asking why she would want them removed and she said that they reminded her of a horrible time in her life and that she hated them.

This is where my glass-half-full personality jumped in. Although some of the ladies talked about how they insisted on invisible UV markings (who knew this was a possibility??) or they used sharpie markers  and stickers (which didn’t sound all that safe to me when you are doing six weeks of daily radiation), most women did not understand why it was such a big deal. Would I have gotten these little dots if I didn’t need to? Of course not! But as part of treatment for breast cancer, I am kind of proud of them. They remind me of a hard fought battle that I won, and no one sees them but me and my husband. The only other person who ever noticed them was my dermatologist during my yearly full body check. Even in a bathing suit, no one notices, and if they did, I would proudly share my story.

These are my battle scars, and just like the various scars that I have gotten from falling, scratching myself raw, or burning myself thanks to MS and the role it plays in my life, they might not be beautiful to others, but to me they are. They are my souvenirs for living tough and playing the hand I was dealt like it was the one I wanted.

I never expected to be a supermodel, and even if I did, airbrushing can take care of anything superficial. But it can not build strength or resilience the way these various imperfections on my body have. I’d rather be perfectly imperfect and strong AF (ask a millennial if you don’t know what that means) than dishonest about who I am and how I got here.

In fact, shortly after I finished my treatment for breast cancer, I got another tattoo. It’s where I can see it and admire it every day (which I do) because it’s a reminder to me of how strong I am even when I don’t feel like I am. If I could see those little freckly tattoos maybe I wouldn’t have gotten one that is right in front of my face all the time… or maybe I would have.

My double-awareness tattoo… I love everything about it and it is my daily reminder of all that I have been through.

Going through breast cancer was not a fun experience, and I didn’t mean to insinuate that it was when I told the woman about why these tattoos don’t bother me. I think anyone who has had breast cancer would agree that it’s not a fun time. But the journey there brought me to where I am right now: deeply happy, amazingly healthy (despite multiple sclerosis), and full of gratitude for every single day I am given to enjoy on this planet. All it would take is a slight shift in perspective, and maybe this woman could be enjoying some kick ass lemonade with me, instead of just sucking on the darn lemons. Just sayin’.

MS Awareness Month

Leave a reply

Being that March is MS Awareness Month, I would be remiss if I didn’t blog on the topic at least once this month. The Cambridge Dictionary defines “awareness” as “knowledge that something exists, or understanding of a situation or subject at the present time based on information or experience”. While I feel that most people have the knowledge that MS exists, very few of those people (if any) are truly understanding about how different one’s life can be when MS tags along for the duration. 

The array of symptoms that each patient is afflicted with varies so vastly not only in the exact symptoms experienced, but also in the intensity that those symptoms carry. I do think that MS Awareness is more about understanding than anything else, because without a cure, that’s what we really need. 

For example, one person made a comment to me about the following scenario: We had a family event planned which required traveling over an hour just to get to the venue. Prior to that, of course, I had to shower, attend to this thick head of curls that always needs attention, dress in normal clothes (not PJs or workout gear), put on makeup, and then travel the hour. All of this in itself is exhausting without even counting in the event itself. The comment made to me was one of complete and utter disbelief, “So your energy is sapped because you showered and got ready and sat in the car for an hour?” Yup. That’s how it works. When I am dressed to go somewhere, of course I try and look my best, and I usually hear, “How are you feeling? Because you look fantastic.” Looks can be deceiving, and no one can see what’s wreaking havoc inside my body because of lesions (scleroses or scar tissue) on my brain and spinal cord. 

I’m going to be brutally honest here and I’m going to share some of the invisible symptoms that I endure every single day but you don’t see. Maybe if I talk about them, even if they are embarrassing, we can get to a place where awareness equals more compassion. 

First and foremost, let me just say that I am “blessed” (sarcasm… in case you couldn’t tell) with some symptoms that are considered “rare” for MS patients. I’d like to tell each and every one of you that if anyone (even a neurologist) tells you that pain is not a symptom of MS, run (unless you have MS, then just walk, hobble, or roll yourself away as quickly and safely as possible)! The reason why I mention pain first is simply because it interferes with my sleep. The pain is bone deep, and it’s a constant ache (with an excruciating spasm here and there), primarily in my lower extremities. It’s very difficult for me to find a comfortable position, and when I do, it’s only temporary. Late at night I often wander around the house from bed to couch to chair seeking comfort so I can sleep. I have tried all of the prescription (and over-the-counter) sleep aides, and pain killers of all varieties, but to no avail. In addition to the pain, I deal with what I refer to as a “cranky” bladder. This means that when I have to urinate I can’t, and I try and try until tears are streaming down my cheeks. There is a solution (self-cathetorization) which I am NOT open to at this point in my life. I can’t even believe I’m writing this, but people should know. This doesn’t just happen at night, but it’s worse at night, and adds to my inability to sleep.  Sleep deprivation on its own is enough to really mess with your thought processes, not even taking into account cognitive deficiencies due to MS. Imagine how you’d function sleeping only 1-2 hours at a time. Every. Single. Night. 

In addition to just feeling sleepy because of my nighttime habits, I also get to “enjoy” (again, sarcasm) the body crippling fatigue that is so common with MS. Imagine that one minute you feel fine, and then the next minute, you can’t even  summon the energy to pick your leg up to take a step. Everything feels like it’s wrapped in lead, and you feel as though you’re just sinking in quicksand. There were many days while I was still working when all I could do was put my head on my desk and cry because I didn’t know how I’d make it to my car, or home. When you tell someone with MS how tired you are, understand that your tired (because you didn’t get a good night’s sleep) can in no way compare with MS fatigue. It is, for sure, in a category all its own.

Another “fun” (have you caught on to the sarcasm yet?) symptom is my total lack of balance. There is a neurological test known as Romberg’s Test. I am Romberg’s positive, which sounds good but it isn’t. When a patient stands with feet together, arms by sides, and eyes closed, a Romberg’s positive patient will sway, or even stumble or fall. It’s a test that is used to detect poor balance. While I don’t walk around with my eyes closed and my feet together, I am always off-balance. I have a wide based gait as a coping mechanism, but being off-balance can be extremely debilitating. I can’t be in crowded places because I can’t maneuver a crowd with my wide gait and perpetually numb feet), and when there are a lot of people around, I lose my footing. This happened one time at a funeral repast, and I stumbled very obviously. Another guest at the table (who knows of my condition) said, “Did you have a nice trip? Did you just get those feet?”, and because not enough people were listening to him, he repeated it until he was reasonably satisfied that a sufficient number of other guests heard his little “joke”. I cried all the way home. And people wonder why I like to do things low-key and at home whenever possible…

Another symptom that is considered rare is the MS itch. It’s insatiable. And because it is neurological, topical creams and antihistamines are useless.  I have scratched and scarred my skin in so many places, it’s ridiculous. Once the itch starts, it doesn’t stop, and the next thing I know, I’m raw and swollen. The worst part is how badly it burns when I get in the shower afterwards. I have one friend who also gets this itch (shoutout to Cathy!), and it seems that it usually affects the same area so that’s good, I guess. She gets it on her torso, and I always get it on my legs, feet, hands, and shoulders. With all these scars, I’ll never be a model, but they are a part of me and I consider them a badge of honor. Proof of my battle. 

Other symptoms include what I call “surface” numbness from the underside of my breasts all the way down my body, left sided weakness and loss of coordination and function, and what is jokingly referred to as “fumble fingers”. My fine motor skills are definitely lacking! I can’t color between the lines, I can’t clasp my necklaces (love my magnetic clasps!), and I can’t even tie my shoelaces (but I use Hickies laces or similar products). The “MS hug” is not the kind of hug you want to have, as it squeezes from the ribs, all the way around to the upper back, and often causes shortness of breath. 

Perhaps the worst of all the nuisance symptoms I deal with are the cognitive ones because they are by far the scariest. Most times, it’s just simple things like trying to remember the word I want to use, or even forgetting my thought in the middle of speaking. Focus and retention are big weaknesses for me, so I’ve learned to watch certain TV shows and movies with the closed-captioning on. This allows me to read and listen, a true teacher strategy. But by far, the most frightening of incidents has happened to me more and more, but it is a fairly recent development. I can be driving along my very familiar route when all of a sudden I can’t figure out where I am. I start to panic, pulling over at my first opportunity. I cautiously look around, hoping for something to look familiar. Nothing. Finally, I realize I have the perfect tool for this, my GPS. I turn it on and after several deep breaths, I continue on my way. Often I use it even when I know where I am going, simply for the reassurance that it offers me. 

The point is, that many MS patients look just like me. We don’t necessarily use assistive devices to help us ambulate, nor do we have neon signs over our heads pointing us out. But we are not like our “healthy” counterparts because despite what you see, every second of every minute of every day is a battle. We do look good, but we are also good actors because we have to be. It’s the life we have been given, and we accept it because we are warriors and we must. It would be a whole lot easier if awareness really did bring about understanding and compassion from those around us. But for now, I’ll just take comfort in the fact that most folks even know what MS is! 

So the next time you see me (or someone who looks “healthy” like I do) getting out of my car in a handicap parking stall, don’t judge me for not being handicapped enough, and know that even though you can’t see it, my battle is, indeed, very real. 

Not getting the sideways glares and dirty looks from others (on the rare occasion I actually go to a store and use the handicap parking stall) might make me feel that, perhaps, awareness truly can lead to compassion.