The Courage To Be Who You Really Are & What Is This Blog All About l SMart Choice Lifestyle

The shorter version is that SMart Choice Lifestyle was created with the thought of supporting a brain healthy lifestyle with MS, whilst sharing my experiences of living with the condition and all that I do in between. It then transformed into a general MS platform for the Romanian MSers, but that didn’t continue much, as I didn’t think of myself as experimented as to deal with people’s lives and health.

I’m the type of person that if I am not well prepared to do something, I prefer to not do it until I can really do something worth while. So a few months passed, SMart once more became a personal platform, with an intent to inform and give advice on all types of MS-related issues, such as symptoms, diet and lifestyle. It went on as a tri-weekly blog that had predetermined / themed days that I never stopped brainstorming subjects for (exhausting and frustrating to say the least!).

Here I was, with a lot of personal experience to write about, heartfelt and caring topics to approach, and I focused only on giving the “correct information”, the “researched information”. Don’t get me wrong though. I am always documenting and doing my research from multiple sources before I even dare to trust or believe a piece of information, but this process I was going through was so sterile that I could not put up with it no longer.

So I went on vacation for the winter holidays. Three weeks of vacation that is! Time in which I promised myself I wouldn’t stress so much about the blog as I previously did. Was it successful? Of course not! I had on and off ideas, checked my analytics and drafted new articles from fresh topics.

I began 2016 with the same structure in mind, but finally realised that it didn’t do me (or you) any justice. The MS community and myself needed an authentic voice, not a shared-info-in-my-own-view kind of blog. It sounded more fair to me that way. So I went back to the drawing board and came up with the shapes that best represent who I am and what I stand for.

SMart Choice Lifestyle is my online home. A place where I can invite you all to start a conversation about many topics, whilst raising awareness about MS in the process.

Multiple sclerosis currently affects more than 2.5 milion people worldwide. Although it is a recognized serious illness, many people don’t know much about it and how it affects people’s lives and society’s wellbeing as a whole. I must admit that before receiving my diagnosis I was one of those people. I thought the term “sclerosis” meant you were old and unfortunately senile. Boy, was I in for a surprise!

For the past year and a half browsing through the online MS community, I’ve met so many inspiring and strong people who live with MS on a daily basis. These people always have a kind word to say, in spite of their situation. In 2016, I’m looking forward to meet and learn even more from others living with MS and to dedicate most of my time to share from my experience, to try and help each one of them as best as I can.

Since I’ve discovered the online MS community I have felt less alone. I have felt so inspired by the advice and support that I have received in the past. I only hope that I can offer back the same kind of help to fellow MSers who need it a much as I did when starting this chronic journey.

I find it very easy to talk about my illness, so feel free to open a conversation if you want to know more about it. Ask questions and I’ll be happy to answer them for you. MS is nothing to be ashamed or feel vulnerable about. It’s just a disease that happened to me, the person you have already known for years, or that you are just getting to know via this blog.

To be totally honest, it does change the rules of the game a bit. It has made me less tolerant to wasting time on useless, stressful things and conversations, fights or things that are going nowhere. It has made me understand that I’m not that special (as many of us tend to think about ourselves at some point). MS hits randomly and without a known cause. Once it hits, there is no known cure, you have to live with it for the rest of your life.

Who am I to complain about my fate when there are people who deal with even worse situations in their fight with MS? From another point of view, it has helped me become humble, see the greater picture and how we all have a predetermined place in the world.

Everything that happens, every person that we meet and everything we go through is meant to teach us a lesson. Open your eyes. See the lesson behind every aspect of life. You’ll be as surprised as I was to see all that you need to learn!

MS has made me stronger. It has made me realise that we all have a defined purpose in life and that we must do the smart choice (pun intended) and go for the gold! Go do that very thing that scares us the most, but in which we find the most satisfaction and happiness.

This blog is also a platform where I can share my passion for the visual arts, for understanding the intricate web of the human mind and spirituality, whilst writing short stories and essays on various other topics. It is a place where I can let you know how am I doing at yoga practice and what have I learned about neuropsychology and health.

Expect to read posts on all things healthy living, having a balanced lifestyle, yoga struggles and tips and tricks, the belief in the higher power of God, meditation, mindfulness and prayer, soothing the mind, books, stories and writers, photography, movies and music, with an occasional travel diary from wherever my life will bring me to.

Also, be prepared for articles about human psychology, the anatomy of the nervous system, neurology, people’s social behaviour and emotions and how does that all link to living with a chronic illness like MS.

If you got here and didn’t get tired reading all this, if you’re looking forward to being witness and a part of my journey, you might as well sign up to my email list, to be sure you’ll get the three main articles I publish every week, plus an occasional fourth or fifth post when I have something new to share!

Thank you for taking the time to be here!

Until next time, make the SMart Choices for your lifestyle ;)

Love,

Alexandra

P.S. To all my fellow MSers out there: SMILE! It hugs your soul! :)

The Fear of Being Judged and How Can That Mess With Your Online Content

So I’ve been blogging for quite some time now and my inner perfectionist hasn’t been pleased with the results. Each week, I almost forced myself to find new and relevant subjects to write about, making myself forget why I even started SMart Choice in the first place. That alone can get one feel frustration, anxiety and lack of accomplishments.

And then it dawned on me! I was doing it all wrong! A personal blog shouldn’t be built upon what others expect you to write or on what topics you think people might be interested in! Of course you want to put out your best content and make people either feel better about themselves or help their day in one way or another. Of course you want to put out informative and entertaining content that they ask for and/or need at some point.

The part that almost got out of hand is that where I ended up with general subject posts, when all that I wanted to do in the first place is to write from my own point of view, and thus be able to share my story with like-minded people who might be facing the same situations.

But the mind is equally powerful in two ways: it can make or it can brake your ideas. I’ve written before about why I started a platform talking about my MS story and related topics, but the core-reason slipped away.

I remember how alone I used to feel after receiving my diagnosis and all the frustration towards not knowing no one my age that dealed with the same issues. I searched high and low on the internet, stayed away from all the “classic” horror stories one might find and decided to have a place where I can shine a light over this disease and offer a kind word to anyone who might be in the same situation I was.

I had so many things to say, so many stories to share and so much love and encouragement to give, that I focused to much on doing things by the book and ended up leaving myself somewhere along the road, silenced by my own blog. Imagine that! The irony!

I created a fixed structure that aimed to inform, give health tips and lifestyle articles on a weekly basis, touching some of the “hot topics” in the life of an MSer. Things like fatigue, work and changes have been recurrent topics on SMart Choice, and each generated a fair amount of engagement on Twitter and Instagram.

But where did I fit in? I gasped for air as I searched for the authenticity in the story I wanted to tell. I have been totally honest in all of my articles, but something was missing. That something that sparked in an article here and there and then went off in silence.

We all have the fear of being judged and being labeled, even much so when you have a chronic illness that not many people know about. But now I know better! I thought about all the lovely and brave people I’ve got to know over the last year, and that gave me back the courage to speak my own voice. So many MSers out there came into their own and I feel like it’s time for me to do that too.

After all, I am not defined by my illness, but by my power to live life to the fullest, by the things that I am good at and by the kindness I am so wanting to put out in the world. Long story short, I want to rebuild SMart Choice Lifestyle and shape it around the life and the stories I can give to the world. Make it about the point of view that I can add to so many others that are online.

Expect books, short story writing, visual storytelling, yoga, psychology, brain health and more. All that lived on top of what we MSers call “the snowflake disease”, and that others might know as multiple sclerosis.

It feels so good to take that out of my chest! Especially after the massive anxiety attack I had last night. It came out of nowhere and lifted all my senses into flaming fear. But that’s a whole other article. Soon to come!

Sorry if for some of you it might sound a little overdramatic, that’s how my writing tends to be. It’s missing all the voice, gestures and tonallity that you would have when hearing me talk about the same stuff in real life. Curious about any aspect I talk about? Just ask and I’ll be happy to give you an answer as soon as I can.

Lots of love,

Alexandra

Contemporary Portraits. What The World Needs to Know About Multiple Sclerosis

This morning when I woke up, I thought about what my approach will be in today’s article. About what I would like to portray and talk about. And then it hit me! Por-tray… hmmm! A portrait is an image of an individual which other persons look at. How is MS seen by the world? And then the words began to flow upon my keyboard.

Let me talk to you about a few concepts first. There are two opposite terms in sociology, one referring to the people inside a certain group (ingroup), and the other reffering to the people outside that group (outgroup). Society itself is made out of different communities and subcultures. 

Human beings come together based on common interests, social status or gender. You get the point. The multiple sclerosis world community is the ingroup in this picture. The outgroup is society at large. Let's see how people get to know things.

Now, we all have the tendency to judge or label what we don’t know. It’s how our brain works. It quickly makes up its mind about a certain situation, object or person, so that it can better identify it and place it in the right category. We all have all kinds of categories. For the sake of this article, I’ll simplify them and talk about only two:

• the things we accept
• the things we reject

We tend to accept more the things we have information about, the things that are recommended by somebody else, the things that we like, the beautiful and healthy ones.

On the opposite part, we tend to reject the things we don’t know much about, the things nobody heard of, the things we don’t like, the ugly and sick ones.

The Portrait of MS Seen By Others

That leads me to the second point of my blog today. How are people with MS seen by others? By the outgroup? 

It’s kind of tricky, because multiple sclerosis is often an invisible disease. How do you explain it to people? For instance, you tell them it is a potentially debilitating condition that affects the brain and many of its capabilities and they imagine a person in a wheelchair, drooling and being cut out of this world. And it is truly not their fault.

We, the ones who have multiple sclerosis, keep maintaining the same perception on the condition in people’s mind. We hide it like it’s something contagious, disgusting or tabu, and then we get mad of the world for not being aware of our sufferings. Ahm… that’s a pretty strange behavior if you ask me. In general, you can’t help a person who doesn’t want to be helped.

Why we fear sharing MS?

We are afraid of being judged. We are afraid of being rejected. We are afraid of people feeling sorry for us. Because so is the public perception, that when you tell someone you are ill, they immediatelly think you are helpless and need to be cared after. In some cases of MS this might even be true, but for most people who have just been diagnosed, the situation is the opposite.

Many of us are young people, between the ages 20 and 40, in the prime of our lives, who have careers, plans, relationships and dreams. We are what society calls “normal”. And then add MS to the equasion. It makes you feel different. Not for yourself, but for the way you think people might look at you.

Having multiple sclerosis is scary, because we are confonted with the biggest fear of human beings: the fear of the unknown. We always tend to control the environment around us.

Since we begin to walk, the tendency to explore and conquer the reality around us is everpresent. Seeing, hearing, tasting, smelling, touching, walking, jumping, throwing, running, climbing trees, riding a bike, a car, skiing are just ways in which we get to control what is surrounding us. But when your senses fail, you get scared. And you hide even more.

You lie to yourself and feel the curiosity of people around you. And you hide some more. You begin to look awkward and people stare. You walk funny and people point fingers. You trip and fall and people laugh. The world is spinning around you and what do you do? You hide still. You keep MS a secret. You make people ask themselves questions that you will never give answers to. People want to know. People NEED to know.

So far, the way most of the world perceives multiple sclerosis is as a frightening disease that threatens your capabilities to interact with the world. And it’s true. You already let it do that.

Multiple sclerosis might be a serious condition, a debilitating one and a humbling experience,  but every day I see battles. People that fight against it day by day, year by year. People who have courage, people who challenge themselves, people who keep going, people who have families, people who have dreams, people who have careers, people who are amazing human beings… people like everybody else. 

And the world ignores most of these stories. Because we’re afraid to tell them. Because we’re afraid to be judged. But we’re mostly afraid of being missunderstood. Of being alone. Of being not true to us.

Call to action

We must open the conversation. Tell people our stories. Tell them the good, the bad and the ugly truth about living with multiple sclerosis. We need to make people understand what MS is, what it does and what needs to BE done in order for it to stop randomly ravaging people all over the world.

So, I challenge you to a dialogue. To start a conversation about your life with MS, about the stories you feel like sharing to the world, the ones that you need to let go of your chest.

We are all human beings and need support. We need to face our fears. We are stronger together in the face of adversity.

Come, let us talk! The world is listening.

Sincerely,

Alexandra Celic

P.S. The Contemporary Portraits of MS Interview Project is starting soon, begining this August. Interested in knowing more? Send me an email at smartchoice.livingwithms@gmail.com and I’ll sign you in. An article detailing the whole experience will be posted next week. Thanks for the visit!

The Maya Of Being Beautiful, Smart & Healthy

Do you believe in magic? Mass consumption says you do. Mass media says you do. Our society lives in a bubble, denying and masking chronic illnesses. Denying and masking people who live with chronic conditions and glorifying beauty, intelligence and health. Imperfections and disease scare us. All human beings are afraid of rejection and death. Let us reveal the illusion in today’s article. Read along…

The term “maya” comes from sanskrit and literally means “illusion” and “magic”. Today’s society is an exclusive magic show, which only features beautiful, smart and healthy individuals. You see it all the time and all around. TV shows, movies, billboards, commercials, glossy magazines. You hear about it all day long. At your favorite cafe, at work, at home, at meetings with friends. The maya is all around you.

But you have multiple sclerosis and the maya does not know how to portray something that is not glitz and glamour so you feel rejected.

Wake up and breathe!

Let’s repeat the last part: an illusion rejected you. Something superficial, man-made and elitist. What does that say about your personal value? Absolutely nothing. You are a member of society, your own person, with quiks, loves, likes, hates, dislikes, dreams, succeses, failures, families, jobs, oh! And MS! That’s considered your flaw. A condition you got randomly, to which there is no identified cause and no known cure.

Maravellous! Let’s outcast every person who does not fit the maya! Imagine what our world would have been if there would be no flaws, no mistakes, no trouble, no pain, only perfection! Welcome to the Planet of The Apes! That’s where we would be still. We would not have evolved, because we wouldn’t have known adversity.

OK, OK, the natural selection issue! Let’s talk about that too. Nature and society have a common system: what cannot adapt, will perrish. And it’s fair for about five minutes in today’s society. People with MS are already members of communities, have contributed to the greater good in one way or another, they pay taxes and all. It’s just misconception. Lack of awareness.

Old age, disease and death are a natural outcome for all of us. We tend to reject what we fear most. But the three are going to happen to all of us sooner or later. It’s just what you do with and in that time in between that matters. Human beings need to have a purpose. We need to feel and be useful. We need to feel apreciated and loved. We need to feel normal.

By rejecting chronic conditions, people only reinforce the maya. They passively support the frivolity and lack of meaning in today’s media and consumption. They deny what is inherently human: to be a social creature, to be useful and supported. Pretending not to see old age, dissability and death is not going to make them dissapear.

The maya eventually falls. And then you must face the truth. Have it easy and start educating yourself on these matters now.

Multiple sclerosis makes no discrimination. It occurs randomly. A cure must be found soon.

The maya is not imune to the russian roulette of life.

Sincerely,

Alexandra

Question: Did you ever had to confront the maya? Come join the conversation on Facebook and Twitter! Thank you for your engagement!

Treatment or No Treatment, Multiple Sclerosis Is Unpredictable

Life is by default full of uncertainties. You can’t predict what is going to happen next. You can forsee for a little bit, but prolongue those thoughts and you wind up in full-blown anxiety mood. So most people take life as it comes and make what they can of what it’s been thrown at them. It’s all just a gamble.

When multiple sclerosis gets into the picture, things spice up a bit.

It ads a bit of adrenaline rush to everyday living. Its unpredictability and insidious relapses can get even the most positive person fearful, angry and feeling stuck. Some people loose control, feel depressed and fully dominated by their condition.

MS is the kind of illness that manifests differently to each and every person. It’s uncurable but manageable. Nowadays, there are 10 treatments available on the market. Thinking now that MSers have it all solved for themselves? Think again!

Although there are many disease modifying drugs or DMDs, their accesibility is limited by all sorts of factors, ranging from high costs to being aproved or not in a certain country and reaching to the waiting lists of Romania.

A Quick View Over the Romanian Case

There are 2 milion people who have MS in the whole world, and aproximately 10.000 of them are found in Romania. Of the almost 8000 that need treatment to stop the disease progression, there are about 2700 individuals actually receiving treatment on the National Programme. The others are told to wait for funds to be available in order to pay for their costs.

People are then faced with the biggest fear of them all: “Will I survive? Will I get through this? Will I finally get treatment?”. Add this to the first two unpredictabilities that I metioned before and you have the conditions for a full-blown crisis. 

People get angry, depressed, more angry and go pick a fight with anyone who rises above them. They become judgemental and backlash at any other MSer who had the opportunity to get treatment. But they are only suffering and scared. You would be too.

My Treatment Story

I am one of the individuals that got into treatment fairly quick.

Diagnosed in July 2014, I took all the tests required for a proper diagnosis. It was confirmed that I had MS, and an EDSS score of 1.0, indicating that I have minimal damage done to my nervous systems, but the disease is there, active.

Then I was offered the opportunity of entering a clinical study for Rebif, one of the interferons used to treat MS. I never had a discussion about treatment options, which one is more appropriate to my condition, which side effects can I tolerate better and so on.

At my own risk, I was assertive and I turned down the treatment. I explained the decision to my doctor and asked if and when a new treatment oportunity will be available. I was told that for 2014 there are no more funds, but the Comission meets again in March 2015, and I can submitt my file on February to see if I get approved. And then I waited.

Christmas came and went. 2014 made way to 2015 and that February I went to submitt my file and sign the agreement for the if-to-be-approved treatment. My option was Copaxone. I discussed the whys and whens with my neurologist and we agreed that this was the best option for my situation. And then I waited some more.

At the beginning of March I received a call from the hospital asking me to come and prepare for treatment. My file was approved. The Comission analyzed my file and they found me suitable for treatment. The exact reasons for such a quick approval were not made clear. Only that I was eligible for treatment, given all the conditions of my illness.

And I went to the hospital to get my first dose of Copaxone. Happy (my mother will not have anguish and nightmares anymore) but anxious, I entered the room and was quickly introduced to the AutoJect, the treatment itself. I was told when and how I must administer it, how I needed to rotate the injection sites in order to take care of my skin, and lots more. The whole thing lasted about 20-25 minutes and ended with my first shot, then and there.

As I saw the nurse coming near me with the first dose, my anxiety went through the roof. I got a strange kind of fear. A menacing fear, one that threatened my whole existence. The thought of “why do I have to do this? I don’t wanna do it! why me?” came to mind. And then the needle came out. And the first sting began. “Lovely” moment. If you’ve ever been hit by a bee hive, you’ll understant this first sensation.

The alien substance met my immune system then and there. We’ve been “friends” now for… 127 injections. 127 times the needle went through and knocked my T-cells out. But in doing this it wacked me out to. Sometimes I get sleepyer than usual (add THAT to fatigue!), I get angry and agressive for no particular reason and I get welts and hard knots under my skin. I itch and feel drowsy. Sometimes I get energized after the shot. But all the time I am reminded of MS.

The Unpredictability Continues for All

Unpredictability is still there though. DMDs don’t cure MS. They only slow the progression and reduce the relapse rate. But without them the risk is way to big to take. The cost is the main problem. By doing a simple Google search, you find Copaxone as being the cheapest DMD in Romania, costing around 800 euros (3399 lei) versus Rebif, which is more expensive 1037 euros (4599 lei). And that’s just for one month. More people need to be able to have access to treatment.

There is an urgent need for funding and of proper management of DMD costs for patients with MS in Romania. It is unacceptable that people have to go through lists and waiting while their disease progresses. It’s scary. It’s like falling of a cliff with no one there to catch you. Bungee without the cord. Find your own metaphor. But the truth is this: the more time goes by for people who are not receiving treatment, the more indirect costs there will be with the care and rehabiitation that they will eventually need.

Call-to-action. Let’s help!

Given this situation, I challenge you to stand up for these people. I challenge you to volunteer in raising awareness and let the public opinion know what multiple sclerosis is and what needs to be done in order to keep the health of the people who want to live a normal life, to work, to love and to be happy. You all want the same things. Let’s help.

Feel free o ask us questions about multiple sclerosis, about ways you can help us raise awareness and funds and much more. First, aknowledge there is a problem. Then share. Then join us in the fight against the social unjustice being done to these people.

Thank you for reading this article! Use the buttons at the beginning of this article to share it so that we can spread the word. MS can be treated.

Sincerely,

Alexandra & the SMart Choice Team

The Right to Hope. A take on Romanian Multiple Sclerosis

So I received this comment (scroll down to read it) that I resonated with at a deeper level. Most people would have deemed it as offensive. I’m not being a hypocrite. At first, it did make me feel a bit offended. But then I stopped to think for a moment. And I began to understand this person’s point of view. In fact, I recognised some of the ideas as one of my own.

Every person with MS has a story. Every person with MS has a voice. And that voice needs to be listened to. That person must be understood, helped and appreciated for the unique human being he or she is.

I refuse to accept that people can be left with no hope. I will not stand and watch as just one single individual gets treated unfairly. I see the fear, I see the anger, I see the frustration. I can even see the despair some might come to have. And I understand ALL of that! God, how I understand it!

It’s a real life fight for survival, not the kind you get to see on TV, in movies or in overdramatic news reports. In Romania, some MS’ers  are stuggling to get through another day, another hour. And there’s ignorance! So much ignorance! The public opinion is unaware of this much suffering. People blame. People point fingers. People just don’t care.

And the fear, the anger, the frustration and despair come again. Why these feelings you ask?

Because their HOPE is threatened. Their FUTURE is NOT CERTAIN, even more so with a diagnosis as multiple sclerosis: an invisible, incurable and unpredictable illness. These people are told to wait on a list. To wait for the treatment that might help them. To wait on a bloody list as they hold on for their life and gasp for air at the slightest symptom. To wait on a list as their families see them struggle. As their friends fail to understand them. As employers treat them as replaceable parts in their business motors. As the Government treats them as “mere statistics”, as “too few cases, money not justified”. There aren't enough funds for all patients and many have to be left untreated, they have to wait. As the society judges people who seem different than the norm. As the media is filled with surgical enhanced models, sex scandals and shallow content, just because it “brings more audience”.

MS is cruel. But you know what is even crueler? IGNORANCE! Ignorance and criticizing what you don’t know or don’t understand.

And then they ask “who are these MS’ers and why are they bitter, angry and have a victim mentality?”. The truth is MS'ers are hurting inside, they are just like you all: wanting to be understood, apreciated and heard. To have families. To have jobs. To be productive. To be loved. They just want to live normal lives. And for that they need access to treatment.

Help us raise awareness for multiple sclerosis. Help us stand tall and dignified. Share this article and ask us questions.

ALL people have… the right to HOPE!

Sincerely,

Alexandra Celic