Happy Birthday Copaxone! Who Wants To Fundraise With Me for Young MSers Access to Treatment in Bucharest?

Anniversaries are supposed to be fun. You engage with things you like and that make you feel good and get somewhat emotional. Today, I’m engaging with something I got used to like, that makes me somewhat healthier than I already am and somewhat emotional.

If someone would have told me back in 2014 that I will have to do a daily injection just to increase by 30% the chances of a slower progression of relapsing-remissive multiple sclerosis (RRMS), I would have thought him to be insane.

But so is life, that it has the habit of giving you challenges. It kicks you with exactly the things that you fear the most. In my case, as in others who have been diagnosed with an incurable diease, is the fear of actually being sick and in time not being able to live as you like and enjoy all that life has to offer.

I’m not talking about the fear of needles here. Some while ago I thought that I was afraid of needles and hematomas, but I was in fact being anxious about the negative emotions and thoughts I had about needles and injections in general. Not complaining at all. The serum is uncomfortable sometimes, but it’s a very small price to pay facing MS.

I am incredibly grateful to have received this treatment. As all MSers, I too want to be able to control my health. I even began fearing that the treatment might be taken away because of lack of government funding or due to some new price regulation of the pharmaceutical companies.

Copaxone, or the idea that I need to have it, otherwise things will get really bad in time got me addicted. Today it’s been a year since the first injection. I am so used to it, that the thought of not being able to have it gives me serious anxiety.

Thinking about this scenario, I am humbled by the people who are not receiving any treatment and that are getting through daily life with MS much harder than I ever will.

My wish is to be able to help other RRMSers to get treatment too. To be able to make them feel less anxious, less angry and sometimes scared of losing access to their own lives. I want to work on providing them the best outcome possible for living with MS in Romania.

It’s an enourmous goal, but I truly believe in it and I know that if we do one step at a time, we will surely get there and even further.

Change operates slow. It’s a process. A marathon rather than a sprint. It needs training and as with all things in human life, it’s all better done when you are part of a team.

So this is a call for all people who who wish to be part of a change for the young MSers in Bucharest who need help, support and treatment.

Join SMart Choice Lifestyle in raising a team of volunteers that will work for a better life with MS in Romania.

First step, what ideas do you have to help fundraise for the Romanian MS Society? 

Send them via email: smartchoice.livingwithms@gmail.com untill May 2016, the MS Awareness Month and World MS Day. All the ideas will be summed up  and posted in an online meetup group, where we will do most of our planning. All the details of the group are comming this week!

Who’s with me?

(***LATER EDIT: Here's the meetup group - SMart MS Group Bucharest. All you need is a Facebook account, click "Join" and you're in!)

Sincerely,
Alexandra

Anatomy Of An Emotion. Multiple Sclerosis Style!

Do you have mood swings, incredible lows and incredible highs? Is MS… messing with how and what you feel? First, let me tell you how emotions are born.

Inside the human brain there are a few parts that are responsible for the emotional response.

The limbic system, also called the “emotional brain”, is one of the first areas that develop. It is the main part of the brain responsible for processing emotions. It’s function is yet very primitive. It can differentiate between levels of danger - less / more / very dangerous - and it reacts to fear stimuli. The amygdala is one of its components, and is the part that assesses the emotional value of the stimuli.

The area between the front and middle of the brain has a huge concentration of dopamine receptors that make you feel pleasure and be happy about your life.

The hypothalamus regulates your emotional response and the hypocampus turns your short-term memories into long-term ones, helping you retrieve stored information. Your memories let you know how you react to the world around you, including what type of emotional response you are having.

The two brain hemispheres also keep your emotions in check.

Right versus Left

The right side is responsible for abstract ways of thinking, symbolism, gestures and for the identification of especially negative emotions such as fear, anger and danger. It is more impressionable. It is the creative and sensitive part of the brain.

The left side deals with concrete ways of doing things, literal meaning of words and mathematical calculus. It is the scientifical and objective part of the brain. It also interprets emotions and the logical way to react to them.

Without the left hemisphere, the right one would be overcomed with negative emotions and would not know how to cope or respond to them. The other way round, without the right, your left hemisphere would not be able to identify negative emotions.

Memories drive and inform emotions

The reason why you remember things is to know how to react in a similar situation. Your brain has already analized what happens in a certain context and gives you the information needed to face the present one. Memories of previous experiences dictate the intensity of the current emotion.

For example, if your past experience with needles was a scary one, and you interpreted it as something that is harming you, the next time you have to have an injection, you’ll possibly experiment the same emotional reaction. 

The right brain identifies the stimuli and identifies the type of reaction: fear. You get tense, begin to sweat and / or talk to much. The left brain comes in and it logically asseses the situation, it sees that there is no iminent danger, you calm down and the injection goes smoothly.

Ways that MS influences emotion.

In MS, injury to the brain happens randomly. Because there are so many brain parts that process different emotions in different ways, the place where you have a new or old lesion, can potentially change your mood and emotional response to reality.

MSers are known to have mood swings, incontrollable laughing or crying outbursts, to get angry faster and to get deeply frustrated on things that normally wouldn’t cause such a reaction.

In newly diagnosed people, fear, anger and emotion may happen frequently, as the frustration of living with a chronic disease takes its toll on their capacity to cope.

Emotional symptoms and manifestations in MS are a large topic. We’ve only scratched the surface of this issue with today’s article. Most likely there will be a series on the topic.

Untill then, smile and keep making the SMart Choice for your MS Lifestyle!

Last, but not least, I would like to thank Positive Living With MS for inspiring me to write this article. You are such a wonderful and positive person. Thank you!

Sincerely,

Alexandra

P.S. Question: How are you managing emotional symptoms on a daily basis and how are they affecting you on a personal level? Leave a comment down below. Thank you for reading!

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(Photo credit)

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

Diagnosed with MS: Did you ever feel alone?

For a few hours now the sun is blazing and knocking on my windows. It might be a beautiful weather outside, but my MS is not so excited about 33 C. It’s 16 pm here in Bucharest and accordind to my schedule, I had to finish today’s post hours ago. But I don’t mind! Here’s why.

I began this blog with the sole purpose of raising awareness for MS in my country. I find my best expression in the written word. At the time of diagosis, the only good information I could get my hands on was from websites outside Romania. Of course there are knowledgeable institutions and organizations that take care of these issues, but the information I craved was nowhere in site. All doom and gloom. Not a positive outlook for a 28 year old with lots of dreams in her pocket and an independent mind.

SMart Choice is a platform born out of the need to help. To help other young people who got diagnosed and thought that their world would mean a wheelchair sentence in a few years. SMart Choice is about a smart (pun intended) outlook on living with MS. A place where I can share my day-to-day basis MS life hacks. A place where you could come for support, counselling and a good virtual hug in time of need.

I think big because my life did not teach me anything else. I dare to dream because I know I can fight this condition. I want to help because once upon a time, almost a year ago, I was alone. I needed information, understanding and like-minded people with the same outlook on life: healthy, witty and sarcastic.

I am open in talking about MS and the “Pinky Moments” it gives my brain (inspired from Pinky and The Brain cartoons). I finally chose to write in English because I can make myself heard better this way. I can create bridges and not stumble upon language barriers. I can raise awareness not only about MS, but MS in Romania. There are some older posts written in Romanian, but with time they will be translated. They are mostly about the nervous system, about questions to ask your doctor, and more technical issues like that.

There’s no tragedy about not posting an article at a certain hour. What matters the most is showing up. Simply being there in case anyone needs you.

Most of all I want to help people not to feel alone. I now know that I surely am not.

Thank you for reading!

Alexandra Celic

***

P.S. Question: Did you ever feel alone when you were first diagnosed with MS? Join the conversation and share your answer on Facebook, Twitter or on a comment down below.

Dr. Jekyll and Mr. Hyde. Multiple Sclerosis Version

When did I become so angry? Where is this rage comming from? Who did I become? These are few of the questions I ask myself when anger gets the best of me. It hurts. It hurts the people around me, the people I care and most of all it hurts me. I get to be the victim. My own victim. Or MS’s? Read on…

Being diagnosed with MS and having to live with fear of, well… just about everything that could cause a relapse or a worsening of symptoms, isn’t an easy flower do deal with. It has ups and downs, moments of sheer fright and despair, and then it all gets back to normal. Or your new normal, given the case. Top that with the general indifference people have, and you are left with a ticking bomb ready to burst at the smallest innapropriate gesture or word.

Nowadays, we all get frustrated with everyday life. MS makes things more… interesting, to say the least. One minute you’re OK, the next you shout at your colleague and the next you cry uncontrollably.One day I’m my own self, laughing, being upbeat and feeling good, and the next I can shift my mood and act grumpy, irritated. Everything seems to annoy me. I transform from the respectable Dr. Jekyll into the ferocious and sneaky Mr. Hyde.

I noticed that I am more prone to anger when I am tired. When fatigue kicks in, my patience and kindness dissaper alltogether and I honestly feel like biting people’s heads off. I become unreasonable and a true cinic. After I calm down I honestly don’t like myself very much. I feel sorry and sometimes ashamed of my reaction. All the anger I supress at a given time, gets out in spectacular agressive and hysterical outbursts. And then I calm down. Or cry and then calm down. Let’s not be picky here!

How I met Mr. Hyde

The first time it happened was after the two months following my optic neuritis and corticosteroid treatment. Corticosteroids are known to affect underlying anxiety that you may have. And they did: count in the full blow of being given a MS diagnosis, count in not knowing much of this disease and you have my first anxiety outbreak with lots of rage sprinkled on top. And with lots of cheers from my public, of course.

The second one came after many people kept telling me that I am way to agressive since my diagnosis, and that I need to calm down. I got mad at them for saying those things, and I thought I would get better. I was wrong. Enter the second anxiety attack: I was feeling guilty of how I was making others feel. I thought I was not being worthy of their understanding That left me feeling even more angry about my diagnosis, and why was this necessary, why did it have to happen to me? The public was in awe.

The third was before my lumbar puncture, when I nearly had a panic attack. Although I read all the information I could get my hands on, although I received many encouragements from my family and the guys from my online community… I pannicked. But that got out of the way fast. My lumbar puncture went out without any nightmares and it was all OK in the end. The public is exthatic.

The fourth time was after a full morning of pins and needles in the eye I had the optic neuritis. I took all the antinflamatory stuff that usually make me better: vitamin D3 supplements, turmeric tea with honey. I ate some fish and it gradually dissapeared. But my anxiety didn’t, and guess what? I had a full outburst, tears, anger and all the scary stuff. The public is fascinated!

After all that, having a conversation with my boyfriend made me remember how strong I really am. MS is just the cheating, backstabbing entity that it is, and you have to ignore it most of the time. Many months ago, when I got my diagnosis, I promised myself that it will not get the best of me.

How to help Dr. Jekyll

When you’re fighting a lifelong battle with MS, there might be some casualties along the way. The trick is to minimise their number and preferably to avoid hurting your family and friends. You need to learn how to cope with these emotions. You need to train and discipline your Hyde-reactions. Channel all that energy into constructive activities, that will benefit you on the long term.

For example, your release valve could be one of the following:

• yoga and meditation;
• horseriding;
• dancing;
• gardening
• writing (my personal favourite!)

Each person is different. MS is different to each of us. We each have our own Mr. Hyde. Study it, learn its triggers and quirks and adopt the strategy you find to be more effective.

Then get in front of the mirror and say the following:

“Here I am, Mr. Hyde! Game on! Yours trully, Dr. Jekyll.”

(Don’t worry, he will not answer back. He is a coward. Be stong!)

Sincerely,

Alexandra Celic

P.S. Question: How do you cope with anger and mood swings in your daily life? Share your answer on Facebook, Twitter or in a comment down below.

Thanks cdiz for the image used in this article!

MetamorphosiS - ep. 2 - Breathe, just breathe!

The Visual Field Exam - 12:00 a.m.

It feels good to finally be able to sit in a ventilated room! Ahh, the joys of air conditioning! Hehe! Outside’s a burning hell. Joys of living in the city, it’s all boiling! Wait! They called my name!

- Miss Alexis Celic?

- Yes!

- Come with me, please. We will see you now. Have you ever had a visual field exam done before?

- No, this is my first time.

- OK, no problem then! You’ll have to wear this eye-patch. Which eye has issues… the right one. OK. Let’s cover it. Thaat’s right! Now put your chin over here, please… Like so, yes! And now try to stay still while flashing dots appear in front of your eye. Also try to push this button immediately as you see each dot. OK? Questions?

- It’s all very interesting. And I have only one single question: do I need to get ALL the dots right?

- The purpose of this test is to measure how accurate your vision is. Try to push the button as you see a dot, do not force it, but try to pay attention to their succession.

- OK, thank you. I’m so curious about how it will turn out. Let’s begin.

This looks kindda simple to do. No fuss about it. They’ll tell me that my eyes are tired. All that computer work took its toll. Hmmm… there are not so many dots appearing here. I’m kindda getting bored…. Oh, look! Down there! Lots of them… but close to none up here.

- OK, Alexis! We’re done with this eye, let’s do the other one to compare. Are you ready?

- Yes, let’s get it over with.

Hmm, this one is brighter. Ohh, loook! So many dots! Much more than on the other eye. I feels like I’m playing an arcade game.. or Counter Strike! Wait ‘till I tell Dimi that I trained for beating his ass! … I’m good at this. I could go on and ooon.. What? Finished? Already? Hehe!

- Alexis, we’re done. You can wait outside, and we will call you when your results are ready.

- So fast?

- Yes, we only need to print those out.

- OK, I’ll wait here then.

See? That was not that bad. First visual field exam ever! Hopefully the last too. … I so need a vacation! August seems so far away… tomorrow I’m back to work… and on and on… But then I’ll have two weeks off. Finally!.. And will…

- Alexis?...

- Yes, doctor!

- Here are your results, dear. But I must tell you, even if they turned out this way, you need not worry for all things can be treated. You should get these interpreted by your eye doctor.

- What do you mean “even if they turned out this way”? Is there something wrong?

- I cannot tell you that. The upper eye quadrant seems a little damaged, but it will all have a reason for why it is like this. Don’t be scared, dear!

- OK… Thank you!

- With pleasure!

- Have a good day!

- You too!

What was that all about? Half my eye is damaged? In what way? And why … Ohh, wait!  Let’s look at the results. The upper side of my right eye turned out black… aaand… the left is… is normal. What the hell?! This is not OK. Why I have the feeling this is gonna last a long time to be over with? Calm down, Alexis! Calm down! It’s all OK! You’ve had eye issues before and it all came out ok in the end…. It will all go away!

Enter the Neurologist  - 14:00 p.m.

I’m scared. Why am I so scared? It’s just a doctor’s appointment. He’ll probably tell me I’m alright and that I need to take better care of myself. It’s just nothing! But why do I feel that today something is going to be different? Look, my right eye seems to be better. Oh, wait! It’s not. Back to blurry again. What is taking so long? I’m getting anxious waiting here. I just want to get back home and relax. I’ve been up since 7 a.m.! Already done with my first appointment.. I just want it to be over! I’m hungr…

- Miss Celic?

- Yes! I’m over here.

- You can come in now.

So this is the neurologist that’s gonna see me. I’m curious. I’ve never been to a neurologist before. He’ll test my motor reflexes and stuff. That’s new. Let’s close this door.

- Have a seat, Miss Celic.

- Thank you!

- What seems to be the problem?

- My right eye is blurry. I just came from having my visual field exam.. Here are the results they gave me! (God, he’s so serious and mostly quiet… and me standing here with all this anxiety… calm down Alexis, calm down… )

- I see… Have you had this kind of problems before?

- Yes, but mostly they were all minor issues, tht went out relatively quick.

- Let’s have a look at you. Come over here and lay down!

He’s gonna test my reflexes, I know it. But then again, he’s not that talkative.. I would have wanted to ask him a few things. I have quite a few questions…

- What can I say.. You are all right.

- I’m glad to hear that!

- The only issue we have is the right eye. Tell me, how well can you see this color?

- Rrrred! it’s a dark red… The sensation I get is like I have a grey foil on my eye, and that distorts colors. It desaturates them a little.

- Do you see it grey or red?

- 50% - 50%... it depends. This morning my sight was a bit better, but now I think I am tired.  I never payed attention at how I saw colors.

- You see, this is exactly the problem. You say you had this issue for… how many days now?

- Ahmm.. about 3-4 days.

- And it’s never happened before?

- Not like this, no.

- Let me ask you something. Do you know what Multiple Sclerosis is?

- I’ve read something, but I honestly don’t know much about it.

- It’s a neurological chronic disease. It’s uncurable, but nowadays we can treat it. There are ways that you can live with it and have little to no issues. I’m not saying you have it, but optic neuritis is one of the first symptoms in about 25% of the cases. You should be aware of this possibility. What I recommend, as you only have one pair of eyes, is that you should be hospitalised for 3 to 5 days, and be treated intravenuously with 1000 ml of corticosteroids a day. The hospital is five minutes away from here. You go there, check in and have your treatment.

Hospital? Needles? Intravenous??? Hell NO! How did it come to this?! Why now?

- But… But my family doesn’t know that I’m going there. I have no clothes, no nothing. I need to get home first and prepare. I will consider going tomorrow.

- It’s your call. But if I was in your place I would go today to start my treatment. The longer you postpone treatment, the dangerous it will be for your eyes’s health. I’ll say it again, you only have two eyes. Getting quick treatment or waiting for the problem to worsen is all your decision.

- Of course I want to get better and take care of my eyes. I not only need them for seeing, but for my photography as well.

- It’s up to you. Go home, prepare, but go have your treatment. It’s the best thing you could do in your case. Do you have any more questions?

- No, thank you doctor!

- Glad I could help you.

- Thank you again! Goodbye!

- Goodbye and lots of health!

Deeeeeep breath, Alex, deeeep breeaaath! It’s all OK. It has to be. What will I tell mum and dad? And Dimi? … Breathe….just breathe! Let’s call dad.

- Dad? Are you home? … I need to tell you something!

(continue to Ep. 3 - And so it begins...)

(go back to Ep. 1 - Just a normal weekend)

(to read Episode 1 - click here)