Monthly Archives: January 2016

Medical Marijuana

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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 3 years ago (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 every three months 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!*

IMG_2475

This is one of Bruce’s favorite pictures of us, so I decided to include it with his shout out.

 

Unexpected Gifts

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“I have MS but MS does not have me.” I have always despised this phrase. People use it and think they are being so original, and beyond that, they somehow think it is an empowering statement. I read someone rant about this statement in a Facebook support group, and surprisingly, most of us dislike the use of this ridiculous phrase. People said things like, “How could MS not have us when our whole world changes when we can’t do the same things we could do before?”. I agree. MS does, indeed, have those of us who battle it, but I don’t see it as a negative. It’s the biggest part of me, and (being a true optimist), I focus on the many gifts that I would never have been given otherwise if MS was not a part of my life.

People often give me funny looks when they hear me talk about the gifts I have been given as a result of Multiple Sclerosis. How could there be anything good coming from such a bad place? The answer is all about your perspective, and sometimes a tiny little shift in how you see things can make an incredibly significant impact.

Thinking back to before I was even diagnosed and the onset of the noticeable symptoms that led me through my journey to my diagnosis, gifts were presented to me before anything was even committed to paper. The first gift I was given was the ability to truly listen to my body and to find the appropriate language to describe what was going on, since my symptoms were all “invisible”. I learned how to tune in to what was going on inside my body, and then I learned how to explain to others, very specifically, exactly how I was feeling. For example, when talking about the excruciating tingling, I knew no one would understand just how uncomfortable it was if I simply said it feels like the worst case of pins and needles (like when your leg falls asleep) that you could ever imagine. It was (and is) far worse than that. What it really felt like was burning hot needles poking me from the inside out. Instead of saying that my left side was numb, I said that my sensations were altered on the surface of my skin, but not deep down, and I started using the expression “surface numb”.  Learning this lesson when I did has helped me not only when describing my health, but also when meditating or doing yoga. Being in touch with the energy in our bodies can help in so many ways, chronic illness or not. There is a very powerful mind/body connection that some people live an entire lifetime without experiencing.

As a teacher, I was used to talking to groups of people, whether it was my students or my peers. But what I was given with my diagnosis was a strong voice to help educate others and raise awareness of MS, because I was (and still am) not afraid of telling my story. I started a team for Walk MS, which became a “club” at school, and for eight years we were the largest team in the entire chapter. We raised a ton of money (over $150,000!), when school teams historically raise very little. Walk MS for us during those years was a year-round commitment, and I have heard others say that it was more than a club, it was a lifestyle. Because of my involvement in the MS community and the community at large, we garnered plenty of interest from the various news outlets, thus expanding my reach. I was asked to speak at programs left and right, whether for the MS Society, various school board programs in towns near and far, or other random programs. Connecting with other MS patients and their families, and being the teacher OUTSIDE of the classroom (for my students and peers alike!) remain some of the most treasured gifts I have ever been given.

This is just part of me team. We had over 300 registered walkers.

This is just part of me team. We had over 300 registered walkers.

This bulletin board has some of the newspaper articles that were written about our team through the years.

This bulletin board has some of the newspaper articles that were written about our team through the years.

I could be angry and bitter, stewing over the fact that MS forced me to give up my livelihood and my passion. But that’s not how I see it. MS has given me the ability to focus on me and my wellness, because when I was working, I was 200% work-centric. I didn’t enjoy family and friends the way I should have because I was always thinking about my students, lesson plans, grades, and the million other tasks that teachers are charged with. These days, I am fully present and appreciative of the time I spend with my loved ones. Everyone, no matter what the circumstances are, needs to learn this lesson because the truth is, life is so very short. I smile wider, laugh more, and love endlessly now. I wouldn’t trade my past because it brought me to where I am now, but I wish I had learned this lesson far sooner than I did. Unfortunately I had to come upon it according to my own timeline, but I know it now and I hold my loved ones that much closer to my heart, and that is the gift.

By far the most precious of all the gifts MS has given me has been the addition of a whole other family that plays such an integral role in my life. Because I was able to focus on me when I first stopped working, I was able to enroll in a wellness program for MS patients, which led me to my MS family. We are quite a diverse group by all accounts, but the one thing we share is the one thing that only we understand. Despite our differences, we are tightly bonded to each other in ways that we aren’t with even our closest of friends and family. We lean on each other for the kind of support that can’t be given by others no matter how hard they try, simply because they are not in our shoes. I often wonder how I survived the first dozen years of my journey with MS without having my fellow warriors by my side.

The best support group ever! My MS family is always there for me.

The best support group ever! My MS family is always there for me.

I could go on, but you get the idea. For every thing MS has taken away from me, the universe has given me something way more valuable. It’s all a matter of perspective, and how you see your glass of lemonade. Mine is half full. How about you?

You decide what your perspective is, but life is so much more beautiful when your glass is half full.

You decide what your perspective is, but life is so much more beautiful when your glass is half full.

Happiness

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“Stop chasing happiness and just recognize it.”

I heard this quote recently and I have been thinking about it ever since. It’s simplistic, but speaks volumes.

In this society, people are always looking for the next great thing instead of opening their eyes and seeing what’s right in front of them. I, too, have been guilty of the same in many ways, but in other ways I never got caught up in the hype of what was going on around me.

When I think back to my early and mid twenties, I think about how everyone around me was getting engaged. Comparing engagement rings was a regular occurrence. Most of my friends had outrageously beautiful proposal stories, and I listened dutifully as each was told to me. Bruce and I did not follow the masses, and instead opted for a trip to Las Vegas, where we privately vowed to spend the rest of our lives together. I could have compared my life to everyone else’s, but I’d never choose an extravagant proposal or a huge wedding over what we have together. A friend once told me that some people have great proposals, and other people have great marriages. It’s sad to look back now and see how despite all the pomp and circumstances, several of those people are now divorced, while we have never been happier.

Little Chapel of the Flowers in Las Vegas.

Little Chapel of the Flowers in Las Vegas.

When everyone around us started having children, once again, we were mocked and even ostracized for not following the societal norms that dictated what a family was “supposed” to be. We made our decisions based on what makes us happy, and what we knew to be right for us, especially considering that we were forced to make room in our lives for our silent yet constantly present partner: Multiple Sclerosis. I love children, and dedicated my life to everyone else’s simply by way of my career as a teacher. My uterus twitches the same as every other woman’s when I hold a sweet little one like my gorgeous nephew, but I know my limitations, and I’m damn grateful that my happiness is not dependent on how others view my (childless) family.

My nephew, in all his cuteness!

My nephew, in all his cuteness!

As a dedicated high school teacher, I sacrificed my personal life in order to be the best teacher I could be. I worked 12 hour days, 10 months a year, often missing social events simply because MS did not allow me to be the kind of teacher I wanted to be and still have a life outside of school. My friends and even some family members did not understand why I “had” to do things that way, but then I couldn’t relate to how they felt job satisfaction other than monetarily. When the honor of being selected Teacher of the Year was bestowed upon me, most people wanted to know what perks came along with it, such as a bonus. Nope. I have no regrets about how I lived to work or about the time I invested because I’m still overwhelmed with emotion and pride seeing what amazing people my students have become…and so many of them remain firmly entrenched in my life years and years later. Instead of focusing on the fact that I can no longer do my job, I concentrate on how happy it makes me to still play a role in their lives. Teaching is not something that takes place solely in the classroom, after all.

This was the honor of a lifetime.

This was the honor of a lifetime.

In my estimation, if you want to be truly happy (and I think most of us want that), the first step is to live your life the way you want to live it, without comparing yourself to anyone else. Others might not agree with you, but who cares? Live authentically, according to your own standards, not some standard that society deems appropriate. Someone else might not be happy living the life that I have chosen, and that’s ok. As long as I have a roof over my head, food in the fridge, and love in my heart, I don’t need anything else.

I recognize my happiness every single day. Do you?

Unexpected

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I am the kind of person who believes in the power of the universe. I have always felt that at the lowest points in my life, somehow I was taken care of. At the very darkest moments in my past, I had an intense feeling that there were powerful forces on my side. I’m not exactly sure why. Perhaps it’s karma or a “higher power”. Or it could all be a bunch of hooey that has been manufactured in my mind through the years.

Just about five years ago, Bruce and I were presented with an opportunity to build a new house just two tenths of a mile from the neighborhood where we lived, being built by the same builder. We got all caught up in choosing the lot on which our new house would be built, and then beyond that came the selection of the options we wanted. We put our house on the market in August, thinking we would have plenty of time before it sold. They hadn’t yet broken ground on our new house but the real estate market was not all that strong for sellers at that time. To be clear, I LOVED our first home but we had simply run out of space and we never dreamed that we would live there for as long as we did (12 years)! What we learned was that our home was very desirable, and in just ten days we had an offer that we couldn’t refuse.

Leaving this home was one of the hardest things I have ever done.

Leaving this home was one of the hardest things I have ever done.

We accepted the offer in August, and the buyers wanted a quick closing. Our new house was scheduled to be completed in December (but new construction is ALWAYS delayed), but we were closing in October. And so began the race: getting packed, finding movers and storage for everything we own, and most importantly, finding a place to live for what we thought would be about eight weeks.

Moving out during a crazy October snowstorm. Good times!

Moving out during a crazy October snowstorm. Good times!

Bruce, Mookie (RIP, number one), and I ended up moving into a Residence Inn because it was the most viable option considering where we were both working at the time. To say we lived in close quarters is a gross understatement. We lived bare bones: very limited clothing, no personal “stuff” of any kind, and it seemed like we were on top of each other all the time because the room was so small. It took an hour for us to boil a pot of water on the electric stovetop, we were evacuated in the middle of the night because people set of the smoke alarms, residents above us often seemed to be stomping on our ceiling, laundry cost a fortune and finding ways to hang what didn’t go in the dryer was always a challenge, and the list goes on and on. But we knew it was only a matter of time before we’d be moving out. We lived at what Bruce named “the hometel” for 21 weeks…and one day.

This was home for way too long!

This was home for way too long!

Laundry was $2 per wash and $2 per dry.

Laundry was $2 per wash and $2 per dry.

We used the shower rod to help us dry clothing that doesn't necessarily go in the dryer.

We used the shower rod to help us dry clothing that doesn’t necessarily go in the dryer.

Watched or not, a pot of water took forever to boil!

Watched or not, a pot of water took forever to boil!

The hard hat walk-through made it seem like we were a lot closer to being done than it really was!

The hard hat walk-through made it seem like we were a lot closer to being done than it really was!

Moving into the beautiful home that we chose felt like a dream. I didn’t think about cleaning the three bedrooms and the three and a half bathrooms in this 2000 square foot house. I didn’t think about how I’d clean the ginormous windows. I didn’t think about the amount of stairs. I didn’t think about the accessibility of my home or my neighborhood. I didn’t think about these things because I was still working full time and completing my Masters degree. I was exercising regularly, and even training to run a 5k.

Home (really) sweet home!

Home (really) sweet home!

Completing my 5k.

Completing my 5k.

I’m not saying that we should have equipped the house with an elevator or a chair lift, or that we should have completely outfitted the house to be 100% handicap accessible. I’m not an alarmist, and I don’t think anyone should preemptively modify a home because of what might happen at some point. Maybe.

Almost four years later, I’m in a completely different place. I am not working anymore, and I am not able to do many of the things around the house that used to be easy for me. I can’t keep it clean because it’s just too much. I limit my trips up and down the stairs because I’m afraid of falling. Sadly, even though I love this home that Bruce and I have made together, I know we won’t stay here forever. In fact (even though Bru doesn’t like to hear it), we are just biding our time here and waiting for the right time to go. When that time comes, I’ll be prepared, with realistic expectations about the kind of home that will be best suited for us, and where we can hopefully settle in for the long haul.

Going through all that we did to be in this home together is all part of our journey, and it definitely brought us closer as a family. I’m glad I’m here but I understand now that I have certain limitations that will affect how I see our future home. Like I said, the universe has always taken care of me, and when we are ready, I don’t doubt that we will wind up exactly where we belong.