LIVING WITH SCLERO

Change

2011-08-31T17:08:00.002+03:00

"Onle change is certain."
- Heraclitus

So said a famous philosopher years and years before us. We love constancy. We need something to stay the same. But as I look back now, ten years, five, even one or just 2 months, things have definitely changed since then.

The world aroun me is different. The landscape, buildings, weather, city. My appearance has changed, my thoughts have changed, my values, memories, skills and fiilings.

The human mind has to change because the world changes constantly. That is the reason we have survived this far in the universe: The ability to change. As our race has "aged" through out the history, ageing in us individuals changes our mind as well. I've always felt that I'd want to see myself with couple of kids, a husband and a dog in a countryside, or that I'd want to live to be old and grey, because I've never been able to be happy that way. But as I've gained age and seen the change in me I now understand that I might not find those things so pressing in the future.

So in a way we need change. For the past two months I've been going through the death of my best friend and everything our special relationship ever consisted. I can clearly see the change in it: From acquaintances to what we eventually were, how it happened, and when.

Some would say that now that he's dead our relationship will never be the same, or that there isn't one at all. But in my mind, this is the only thing in my life that will no change, ever. Yet I would want it to. I'd need it to. But we'll stay forever this way. He'll be safe in my heart and my heart will go on.

Change is inevitable, to the better or worse. Also in health. As the world moves and life changes, all the external factors affect our body. Mental wellbeing and its changes affect the balance in our system. These changes cause stress and negative feelings, which do not make us healthier.

Right now I'm battling with symptoms which appeared pretty soon after my friend died. These changes have really shown me how fast all the stress and fear, sorrow, in our mind affect our body. And not to the better.

I've had to accept that my health will never get better, it can only stay the same or get worse. This is somehow missleading, because as we've noticed only change is certain. And yet, every time I'm in a sick-phase, I have to go through it all again. But that I've already accepted for good.

So if all things move and nothing remains still, in my darkest moments I can trust the fact that my feelings and emotions in the mind and the body will change one day. Hopefully that will be to the better.

Pain

2011-07-19T17:30:00.003+03:00

I've been in pain lately. Scleroderma causes the kinda pain that is bearable, but hard to describe. I've been a bit worried about my health lately and I'm definitaly going to see a doctor as soon as I can get my new life arranged. With my service ending, moving to a new town, a new school and job my head is full of other things. But there's something else that has filled my whole being lately.

I lost my best friend a week ago.

We had been living together for 2 years, and were like brother and sister. He was my closest friend and had been for a long, long time now. I once wrote to him that when everything else has fallen, he has been there keeping me on my feet. And that was true, everyday.

He took his own life in our apartment after being in so much pain for years. He told me that it was not physical pain, but the kind of pain you wouldn't wish to anyone. With him gone my heart and soul aches, every day, every hour, every minute. It's like I've lost a piece of myself.

His last words he said to me was that he loves me, and wouldn't have made it this far without me.

It hurts. Not the good moments, now memories, we got to share during these years we had together, but the moments and things that were yet to come. That will never happen now. I miss him. I just miss him.

But in the bottom of my mind I can see why he chose this path. I'm an expert on physical pain, but the pain of mind is the worst kind. It slowly kills you inside. And the pain that his death cause me has taught it to me very well.

When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

362

2011-07-07T11:23:00.003+03:00

TJ 1 Tänään jäljellä = today left: 1 aamu/morning

Prosentteina/percentage: 0.3 %
Kuukausina/months: 0
Viikkoina/weeks: 0.1
Aamuina/mornings: 1
Tunteina/hours: 19
Minuutteina/minutes: 1128
Sekunteina/seconds: 67697
Kotiutumispäivä/the day of freedom: 08.07.2011
(www.aamukampa.net)

Who would have thought, that this day would actually arrive? Tomorrow after breakfast I'll change my army uniform to civil clothes for one last time.

I left home on July 12th 2010 and traveled to Riihimäki, Signal Regiment knowing that this wouldn't be easy. I never doubted how I would handle it mentally, but I was afraid of my physical condition and especially health. My aim was to serve 9 months as a military police.

Now, after numeral series of events, coincidences, training, memories and moments I'll get to reserve after 12 months of service, from Lahti, Häme Regiment as a med sergeant, after training NCO's in Non-commisioned Officer School. This will happen tomorrow on the 8th of July 2011.

It feels unbelievable. Even thou some doubted that I'd pull this through, it has come to this. Happy, proud, melancholic. Those are the feelings this day is made of.

If I was to say something about this year, I could say many things. But on top of it all is proudness. Of course I'm proud of the promotion I got over a month ago and the fact that my team has always been the best. But there's something even greater than all of the other achievements together.

It is incredibly great to think backwards and think that I've had a priviledge to train at first a platoon of jaegers with too collegues. Then it was a platoon of medics with just one colleague. And for the last couple of months, I trained alone a whole platoon of NCOs. According to the great results and feedback I might say that I succeeded. I believe we trained great new NCOs with amazing staff members this time. I just hope that the good training they got from me and from us will pay itself back right from Monday morning when the next group of conscripts will step on service. This continuum, the fact that I might have affected positively to someone's serivce, feels just amazing.

A big thank you to all of those I've worked with and spent some time with during my service. I hope we'll meet in reserve in the future.

Sergeant Myöhänen 362, II/10 SotLK LääkK apuk rogers.
Aamuja.

The Urge

2011-05-24T12:52:00.010+03:00

I've started to understand how big of a deal this whole being sick - thing really is only lately. I mean, I've always known it touches your whole life, but when you really get deep down into it, like I've tried to do, you can't really ever reach the bottom.

It's not just about getting from a daily task to another and accepting it once. I, being a curious mind, have a tendency to want to fully understand all the obstacles on my way. For me that's the way to tackle them. Keep your friends close and your enemies closer. By getting to know my enemies, scleroderma, Raynaud's and their associates, keeping them closer, I have eventually become friends with them, and let them loose.

Last time I wrote about needing. Losing and being in a constant need of help are deep stuff. Deeper than many healthy realize. But this time I want to go even deeper, wonder something that will take us to the next level.

I'm not an existentialist. What drives me from day to day is a feeling that the things I do or say lead to other things and always affect someone else, in good or in bad. I've seen how it works in my own life and in the lives of my loved ones. There's always some meaning in all we do and why we are here.

Meaning. A reason. I've watched so many movies, read so many books, novels and stories about people whose lives have lost their meaning after becoming sick, illness taking it from them. Left with no reason we come undone. We stop being. The person you were is no longer. Turn my back: The urge has gone.

The same urge that guided you through your hardest times is not something you can turn to anymore in a search for motivation. Your goals no longer exist. You were on your way to the stars but now you're just so far from the shore that you're afraid of sinking. You're choking for air, trying to hold on what you've just lost, searching for a hidden meaning to it all.

But when everything is said and done to looking for answers and you still catch yourself begging for that only one.. What's left for you then? You find yourself empty handed, wounded, with a constant war inside your head reminding you that there's no point for you to be here anymore.

It's like forgiving something hard to forgive: You have to do it again every single day - Find a meaning for your existence. It may not be the same it has been before, but I've learned that every morning is a new possibility, a new chance. Each day is different, and if you're willing to receive, each day has something new to offer.

On some days finding those reasons to live seems much harder than on the next one, but always remember that you deserve to feel
Important, and that your life has a meaning.

What's worth the prize is always worth the fight. I, myself, have found a meaning in scleroderma itself; It's a way for me to get to know me and life better. It has dramatically changed the course of a dear friend's life and made other people understand what we are going through. Isn't it ironic, don't you think? But where does an unfortunate event happen, also happens plenty of plesant ones.

When life hands you lemons, make lemonade is such a cliche but that's just how it goes. I suggest that you find someone whose life has given him Vodka, and you make a hellofa party together.

Love & Other Drugs

2011-05-23T18:46:00.003+03:00

This ain't a normal post about scleroderma or something that usually comes out of my pen. My whole life and my whole "career" as a blogger I've been the one trying to show how strong us people really are, how strong I am. But this time it's different. This is to show how vulnerable I actually am.

I've wanted to make it on my own for so long and so far. I've never been dependent on someone else, other than myself and probably God. I've asked for help and I've asked for other people's opinions but eventually made the decisions, hard ones and not-so-hard ones on my own. At a young age, through some not-so-pleasant events I somehow managed to build this shield, a wall, an image of myself being independent, free and constantly going somewhere, always searching for something or someone better. And yet, at the same time I've been able to fool the whole world sence the wall has few cracks in it: I've always been able to love and to give love.

But nothing, and I mean nothing has ever been more difficult to me than receiving. I've thought that I am somehow emotionally handicapped, cold, impassive or insensitive for not being able to totally share my life with someone. I've called myself a freebird, a spirit that wouldn't be happy captured in a cage called "a normal life". But this week I realized that I already am in a cage. A cage built by me.

Little by little my wall has broken. It has been torn down but not by demolishing it completely. I guess that by being so honest, sincere and true this special someone has not only melted it down but also built something new instead: A channel in.

I was watching the movie Love & Other drugs with that very same person yesterday. At first I thought it'd be just an average american comedy I see every day, but soon I realized I was more than wrong. What touched me deep was the leading lady, Anne Hathaway, playing a girl with Parkinson's disease. I found myself in so many of the scenes in that movie that it scared me to hell. Still, the hardest part was to watch her struggle between needing and not-wanting-to-need someone by her side, trying to be independent.

I've been writing about losing a lot, which probably is one of the hardest things that you come across when facing an illness. Needing is another thing, and I've never said a word about that before. That's because I've been avoiding the whole subject through out my whole life.

Our loved ones don't sign up for our diseases when they promise to be with us forever. We feel terrible because at some point there comes a day when we need their help more than the healthy does. That's because the society tells us that anyone should be able to make it on their own. It' just ain't right.

Us human, we were created to take care of each other. We're not alone in this world for one reason: We need love and we need caring. Some only emotionally, some in everyday tasks, but all in all, we need each other. And when you love someon, you do sign up for taking care of you two, in sickness and in health.

That's probably been the hardest thing for me ever to admit. That's also what I learned earlier this week but what truly hit me when I was crying while watching that movie, someone holding me still, taking care of me. It's been much harder than I'd have ever imagined. I has taken me 21 years to realize that I can't shut myself down like I've done before. Even thou being open to someone makes me easier to break, it's something we all need. Not just to love, but being loved in return. It ain't coincidence that it has happened to me now, I believe it has meant to be. Thank God I've had a great teacher whose kindness and patience has unlocked my doors while learning about life himself too.

I've written you in my heart.
A novel approach to love
perhaps...
Secret surrender
Telephatic tenderness.
Everybody wants to matter to someone
And love brings forth love
I've written you into my life
And it can not be erased.
- Stellan

Talking about superficiality

2011-04-06T18:29:00.003+03:00

"Are you tired or something? You look terrible."

I've heard that particular sentence too many times last days. A quick answer to this question is yes. I've been tired for far to many weeks now, but this tiredness is not a result of staying awake for too long or partying too much.

The past weeks have been health-wise the hardest ones for a year. I'm constantly in pain, all the muscles are sore, joints ache and skin feels tight. For that reason I stress out and sleep badly. For these reasons I am tired. Still, the right answer to this question is really not tiredness, but sickness.

Mostly I look like any young woman, healthy, sporty and happy. But in real life in addition to scleroderma I've got five other more or less unusual diagnosis. Seeming healthy to me is like a blessing in disguise: When I look healthy, I don't need to explain a thing. I don't have to explain where I go and when I come, what I can do and what I can not do. No-one questions my good mood or future plans. When I have enough spoons life just goes on and everything's great.

This, like so many other things in sick person's life, is a two-bladed sword: Those weeks when everything don't go so well and there aren't enough spoons to go through a normal day, you have to give explanations and reasons about your condition. "But you don't even look sick" is a common phrase to anyone who's ever experienced something like this.

But oh so clever Finns have found a suitable word for this: Tiredness. Being ill is usually interpreted into tiredness, because it's easier to comprehend and then forget without having to show any feelings. The truth is easy to pass with this concept of tiredness. Due to this the whole word has experienced a minor inflation: Anyone can use it, and they do.

The meaning of tiredness has suffered since everyone of our nation every once in a while feels tired. When a patient sees a doctor he gets an answer "Well, we all feel tired sometimes." We all should start thinking about alternative expressions for an old feeling. I'd go for fatigue or exhaustion.

In 2009 I wrote an entry called Beauty that was partly about this same subject. I wrote about how I'd rather have sclero in my internals than for example on my face where everybody could see it. At the same time I was thinking how superficial I am when it comes to this. But in real life I've noticed how much easier life is when you look healthy despite the way you feel. And for those reasons I still feel the same way about slceroderma.

Butterly commented on that specific entry this way: "I come across to that quite a lot, is it superficial or stupid to take care of one's appearance when you're fighting a long and difficult disease, but why would it be plain vanity if it helps you go on and brings joy into your day. I guess many of us would choose like you!" Liking ourselves and the way we look is a huge part of our mental wellbeing. When you're confident in your own skin life is a lot easier. I've learned how to deal with the great "cosmetic flaws" scleroderma has given me and I don't find it necessary to hide it from others. Still thou, when I'm really feeling sick, "tired", I don't feel like I'm looking good that day and it makes me feel more insecure.

In the end this all is probably just some kind of a psychological survival thing: When I can trick others about my health by the way I look I feel like I'm in control. How ever it is, healthy or sick, I'm going to take care of myself and the way I look till the end, to make my own life a little bit brighter.

How to Grieve

2011-04-06T17:45:00.000+03:00

“Things will never be like they once were. You’ll never be like you once were. But this is how things work, this is what life is all about. You were never the same after the first time someone broke your heart and you’ll never be the same after you experience a tragedy. These losses will change you in important ways. Now it’s your job to not let them swallow you up completely.”

- Thought Catalog: How to Grieve

A thought

2011-03-05T16:55:00.009+02:00

It's lightly below zero and the sun is shining heavenly. Snow scrunches under my shoes when I walk ahead. I'm the first one on the line, and infront of me opens a wide and empty road towards the future.

Exhaling steams and evaporates. I turn around and see slightly panting, red-cheeked faces. I slow down a bit, smiling wider than the sun. Next to me stand huge drifts of glittering snow. Tall, snowy pines let beams of light pass. On the head phones I hear a happy voice and compelling rhythm. Step by step, thought by thought my smile gets wider and wider.

Even thou the moment itself is on the verge of perfection, my mind still wanders to you. To your incredible smile and how your light blue eyes sparkle by your thoughts. To your gentle face and inscrutable expressions; And that moment I realize, how happy you make me.

I feel like flying, flying high through the clear sky and the vast universe. You make living feel light despite its lows and downhills. For a while I can't see the surrounding landscape, I can't feel the cool winter air around me. I'm all focused on my thoughts.

A cool gym-floor and the light blue sky. The music, the atmosphere. Warm cheek and laughing eyes. I feel light.

They say past is like an anchor; You can't fly hight unless you let go of all the things that are holding you down. Sometimes it's just hard to notice, if it's not really dragging you under, just holding you still. It can satisfy you to some extent, but this happiness I'm experiencing is something only flying can provide.

Suddenly I'm aware of the dimension I'm in again, and I lead the group up the hill. Left curve, to the right behind the corner. I encounter faces, familiar and strange, who look me with serious expressions. I'm surprised to notice, that they can not pass me without giving a small grin back.

Happiness, it's contagious. The world is full of it: It just often hides in a way that we don't know how to harness it. Usually it's made of the little things that are right in front of our eyes. Like you.

Soft couch and sleepy feeling. Hand in hand, side by side, the other in ones mind. Memories from yesterday.

For a while I have the kind of feeling I used to have so often when I was a kid: I'm about to burst for all the happiness in me, like it's so huge it wouldn't fit in and needs to get out. It makes me want to laugh and cry at the same time, but instead I just let out a baffled giggle.

I feel like the part of a soul that handles happiness is like a backpack: It can hold just the amount of happiness its content is. When you stuff more and more things into it, its seams start to crack and eventually break. This will shake you, pull you out of balance, and you will run out of it. Before you know it, your backpack is empty. You have to sit down to darn the seams back together, and then continue going.

Sometimes your past might feel just fine, but in an order to fly higher, you got to let go of it. To take the anchor out of the bag and replace it with something lighter, something unlimited and undefined. It is up to you, what you want to hold in that backpack, what you want to keep with you. What kind of moments you embrace, which one of them you will collect and reminisce.

The dim hallway and a quiet building. Everyone else is asleep. A hand behind the neck, fingers among the hair, the other on the left hip. Never wanting to leave.

Down the hill, and up again. A small pond is covered with thick ice unlike last summer. I remember how my life was back then, when I walked these same forests. A lot has changed since then... Life seems as different as the scene around me. What amazes me is that yet everything differs from last time I'm still as happy as I was then. Even a bit happier.

When we reach the base I realize that it's all in me. I'm the one that makes it happen. By seizing the moment, breathing the world in, enjoying whatever there is to enjoy and embracing the fractions of the seconds that feel good. I'm the one who feels them, the one who collects them and holds them. You just bring it out in me. And for that, I thank you.

“Life is short. Break the rules, forgive quickly, kiss slowly, love truly, laugh uncontrollably, and never regret anything that made you smile. Twenty years from now you will be more disappointed by the things you didn’t do than by the ones you did. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.”
- Mark Twain

I'm having such a good time,

2011-01-14T18:15:00.002+02:00

even thou I've got fever and I'm damn busy and yet I really enjoy being in the army right now!

I'll make a man out of you

2011-01-09T14:23:00.003+02:00

To be honest, it's pretty hard for me to admit but the last couple of days have been an emotional rollercoaster for me. Finally I've had a chance to take time just for me and it has led me thinking life in general. Thinking has led to many questions unanswered, but it has also led to conclusions and understanding. And it's been great - both in good, and bad.

The other night I cought it: The delicate balance. I understood that I had done absolutely everything I've ever wanted in life, and that I have the opportunity to keep doing so. I understood the limiting factors in my life, realities and the tornado of constant change this universe is in, and yet I managed to feel optimistic.

I guess my hormone levels are dancing mazurka or something.

Anyhow, this all shaked terribly my inner child this morning. I admit, me, just like most of the girls out there, am a fan of Disney animations. Some say the songs in them are too restless or annoying to listen to, but I've discovered few that I really like. I'll make a man out of you (link to a YouTube video) from Mulan is one of them.

It's naive, childish and at times it doesn't make any sense, at least not to anyone with a mind of an adult. Merely a piece of kids' nonsense. And to me, so much more.

This is not about that "girl in the army"-crap. Mulan is definitely not the reason why I joined. It's more about the classic story about a person you least expected to come over all the obstacles. A story of achieving, growing up, gaining strength. That's what appeals to me in this.

I know I've refered to this countless times, but being sick is a constant war, healthwise and emotionally. You might encounter new battles daily and you basically can not afford to lose 'cause we're talking about your life here. You can not give up.

She didn't give up. She fought and she fought hard. And even thou she's just a fictional animation character, she has taught me to fight too. Physically, like in the army, and mentally, like with sclero.

The part in the finale when she starts to climb up towards the arrow and finally throws it down broke me into tears today. Twice. You can call it silly or girly or stupid or whatever but I can tell you exactly how it feels when she reached the top. It feels peaceful. And that's exactly how I feel right now: Restless and happy, but at the same time, peaceful.

Talk about puzzled hormones, uh?

Tranquil as a forest
but on fire within.

We must be swift as the coursing river
With all the force of a great typhoon
With all the strength of a raging fire
Mysterious as the dark side of the moon.

Fear pt. 2

2010-12-24T12:27:00.005+02:00

Yesterday was the day I was promoted. After 2 months of basic training and 4 months of non-comissioned officer school I finally became a med corpral. That basically means I have more duties than rights in this firm we call The Finnish Defence Forces. That promotion itself to me was a nice thing but even bigger promotion and reason to celebrate is definitely the opportunity I got: I'll be staying in the unit that trains non-commisioned officers to train them for the last 4 months of my service. It's a highly valued position I'm lucky to have. It'll be challenging, but also a great fun.

It's been crazy for the last couple of weeks. I've been a bit stressed so I've barely slept during the nights. I guess change stresses me out if it's happening when I can not control the course of events. I know I should just let go and go with the flow but it seems that I'm totally unable to do that.

Couple of months ago I noticed something funny on my right ankle. It was something that looked like a bruise but then again, not. I stopped for a while, stared at it, and then turned away. I promised myself I'd check on that again after few weeks if it's still there, and tried to forget about the whole deal.

And so it turned out, it wasn't a bruise. At least it's not gone even after couple of months. The skin on the patch looks shiny and just a little brownish, like the milder scleroderma patches I've had for years.

The one definition of linearic scleroderma is that it's supposed to be on the other side of the body as in on the left, or the right side. My whole left side from the toes all the way to the side and the shoulder blade is covered in scleroderma. The part that worries me the most is definitely the left ankle, since it reduces my ability to move. Ballet is impossible nowadays, as well as some other forms of dancing and exercising. I haven't been abel to stretch my left thigh or abs for years. The cold weather is killing me because of Raynaud's but also because of my joints.

Finding weird new patches on the right side of my body far away from the older sclero-areas is definitely scary. To be honest, I have a special relationship to ankles and I'm really fond of them. I need them to be able to move, walk, run, fight, evacuate, dance.. Now correct me if I'm wrong, but if this patch on my right, healthy ankle really turns out to be scleroderma, ain't the whole system fucked up then?

You know, fear is a funny thing. That I have learned during these last weeks. I'm scared as hell what will happen if this really is scleroderma. I've built my life on the thought that it's me on charge, not sclero. But still, in the middle of uncertainty and stress I couldn't channel the fear I felt on me. Instead, during the whole time, I've been afraid what might happen to my loved ones that are not near me, even thou there's been nothing to worry about. I've been so scared and stressed about what's happening to Tomi, Ville, my sisters, parents, friends.. I've been more afraid that ever, for no reason at all. I don't know why that is but I guess it helps not to worry about myself.

I'll be on a leave for over a week now, so Imma try to sleep and relax with the family. I'll try to get rid of the stress so I'll be ready for nex challenges the decade will bring.

I think I have a lot more to say about fear, but this was an update about my health and my journey in the army. I just want to wish a Merry Christmas to everyone and Healthy and Happy New Year 2011. May it be the best year ever for all of us.

Fear

2010-11-26T11:18:00.004+02:00

The other night back in the unit we were having a very rare evening with no program at all. We were even allowed to left the surroundings of the quarter for a few hours so me and a dear friend of mine decided to go out fo a change to explore this new city we'd been sent to. When we were trying to find our way back we suddenly found ourselves standing on the other side of a park with no lights on. The park was like a huge field of grass with one single road going through it. This time of a year it gets black right after five o'clock here in Finland and it was really getting late. There were no windows, no streetlamps, nothing. We were both kind of surprised by this sudden lack of light. I remember us commenting "Damn it's dark, I can't even see the road!" and "Are we really gonna go this way?"

Now, we're soldiers. We're used to operate in the forests with no light at all. I remember us discussing this and me saying "Yeah, but normally I carry my gun with me." and him answering something about having his partner next to him for cover. That's when I said "Good thing there's two of us, then."

That night I started thinking about fear. Fear is natural to us, it's designed to keep us alive. But fear causes stress and stress isn't really a good combination with any illnesses. What we usually fear is the famous unknown: We don't know what it might do or say, what might happen or not to happen. We fear what we don't know, what we can't be sure of, or of which risks we can not evaluate beforehand.

Getting sick is something we fear cause we don't know just how big an impact it may have on our lives. It's probably even scarier when facing a condition of which 98% of the whole population of the world hasn't even heard of. There's suddenly something new and unpredicatble controlling every day of your life which you can't seem to tackle sence you can't even spell its name right.

So what do you do? You build up a shield. When I put my personal shield on, take my 7.62 RK 62 in my hand, I'm not really afraid. I don't know what it is about but even without any bullets in it I feel pretty safe. In every day life the shield of course is more of a psychological, mental thing: You might get tough, isolate yourself from the world or just seem overly brave outside. But inside you just feel lost and helpless.

That's when you gotta start finding out what's there agains you, who's your true enemy, the cause of fear. But what would happen if I had have a lamp with me in that park? It would have lighten up the spot right around me leaving more questions than answers: What's behind that tree over there? Is that a rock or a person? Did something just move in those bushes? Did you hear something or was it just me? All the moving shadows the small light created, all the imaginations in my head woken up by the darkness..

This tactic of lighting up a candle in a middle of the vast universe just for a sneaky peak isn't gonna serve you right when talking about illnesses. It's the starting phase we all gotta go through at first in an order to get to know "each other", but leaving it there will just leave the curtain down. You won't see, you won't understand.

Step by step you gotta shed some light on the subject. Shadow by shadow the dark will fade away once you get more familiar with your own body and soul. Minute by minute you'll get closer to the sunrise and before you know it, the morning has come. Soon you'll realize the night of fear was nothing more than a moment that has now passed.

A better solution for that shield truly is another person, a fighting partner. Once you've got someone to share the battles with the morning will be here faster. With a friend there'll be half the pain and double the pleasure along the way. It's much easier to tackle the obstacles when you've got someone covering for you in the dark. And when there's light, you can see the world together the way it's really meant to be.

Like said, fear causes stress and stress is pure toxic for our health. It shakes the delicate biochemical balance of our body and changes it by creating toxic ingredients making us more sick and more afraid. Break the circle and shed some light on it. Just for yourself.

I will never be afraid again,
hold your breath and count to ten.
Stay for silence,
stay for when I'll never be afraid again.
- Christian Walz: Never Be Afraid Again

Millionaire

2010-10-05T19:25:00.001+03:00

After all these years
after all these experiences and thoughts
after moments and memories
there's still one thing
I have not yet learned

If I'd learn to breathe
I could be, be still
if I'd learn to enjoy
I could hear and see
how the sky builds up upon all
the world around all
life within all

The most important things I'd keep near:
silence, nature, loved-ones
"in that order, so giving up would be easier"

And for those moments
I'd be a millionaire

Shooting Stars

2010-08-17T21:35:00.000+03:00

Can we pretend that airplanes are like shooting stars in the night sky? I could really use a wish right now.

Army-Analyzer

2010-08-16T21:56:00.000+03:00

It's been 36 days since I came here. I remember how it all seemed so difficult and strange at the beginning, all the rules and customs, like I'd never get them all. Now I feel like I'm already living here. I have my army-family, my girls and guys, routines and habits. So far it's been a pretty bumpy road but all in all, I've really loved this.

While I was writing my first real army-entry about my first weeks in here I realized something funny about this life in here. It really resembles a life with an illness. The beginning is hard to understand, first phases are quite tough sence you encounter a new lifestyle, a one that you're not used to. The first days feel so damn long. But day by day, an hour by hour you grow bigger than the obstacles. You get familiar with all the factors that control you. In here those factors are the rules, dicipline. In my civilian life it's scleroderma.

Somedays are harder that the others; I feel more sick or we don't get enough sleep or the weather is + 30 C. But most of the days I get to overcome myself; I get to do things I never thought I'd be able to do, and it makes me feel so good. Everyday I go to sleep knowing I've done something.

It's the same with sclero too; If we just could see all the obstacles we overcome daily as a strength to carry on. That way we could trust ourselves more to encounter even greater hardships. That is the deal in healing; Taking steps forward.

Smiley Soldier

2010-07-24T12:54:00.006+03:00

Day 1

There are moments you understand that this can be so hard and it feels quite hopeless. But in the other hand I've felt relaxed; I smelled a birch.

Day 2

Air is so thick and hot. My plans for this year are starting to get a shape. I am proud of Tomi. I miss everyone. Lately I've had this song ringing in my head: "..even thou I walk trough the valley of the shadow of the death, I will fear no evil, for you are with me..". Thanks for that.

Day 3

Today it feels like I'm just hanging out. The beret is awesome, the staff is awesome, our corporal is awesome, my unit is a little bit unfair, even the girls I live with are awesome. But still I would have wanted that phone call.

Day 4

So now we know each other's favorite Pokemons. The pain in my heels is almost infernal. But I do like shooting with 7.62 RK and can't wait for us to get into the forest! Let's see what I've been made of. The word of the day: Balance: What's too much, where the fence is the lowest?

Welcome to my life

You see it's not easy

But I am doing alright.

Day 5

My wants and plans are really getting that shape now, I feel like the stress that I've been building for 2 years is gone. I'm really getting used to this so fast. Even thou walking hurts and everyone just runs around I like this. In here you learn to appreciate little things even more. You just need to remember to breathe. Loads of sweat, a little bit of blood, not too many tears. I still miss Tomi.

All that is gold does not glitter,

Not all those who wander are lost;

The old that is strong does not wither,

Deep roots are not reached by the frost.

From the ashes a fire shall be woken,

A light from the shadows shall spring;

Renewed shall be blade that was broken,

The crownless again shall be king

Day 6

I know how to aim. Things are rolling on and we're getting more rights. Thanks to the corporals for nice words.

Day 7

Gosh I missed Jukkis, my friend! Today we had visitors here, a friend and my family. Before that there was a church service which was pretty emotional for me. "Some angel was singin there." The heat is on. Must enjoy this free time I'm having!

8,4 kilometers, running, on a falling rain.

Day 8

........ Whatever. I feel tired.

Day 9

Did well on the shooting range! One day at a time. Can't wait for tomorrow.

Day 10

March 1, went well for me. Today I felt the wind for the frist time for ages.

Day 11

I'm really getting along in here. I had a nice day today. We were in the shooting range again and I'm doing better all the time. Gosh how much I enjoyed eating pancakes in the forest, sun warming up the earth and the air but the trees creating a nice shade.

We must be swift as a coursing river

With all the force of a great typhoon

With all the strenght of a raging fire

Mysterious as the darkside of the moon.

Dear fellow bloggers,

2010-07-11T12:57:00.002+03:00

it's been a while since last "real" blog entry. A lot has happened since and few days ago reality hit me: My service in the army that felt so distant is starting tomorrow!

I've spent this last week traveling with Tomi. On Sunday we drove from Lohja (southern Finland) to Kiistala (northern Finland) all together over 1150 kilometers. I was actually ashamed a bit since I'm already 20 years old, a Finn, and I still couldn't say I've been to Lapland. Now this has been fixed.

Monday morning we continued our trip through Levi towards north. For the first time I had a chance to visit a peak of a fell. As I was looking at the landscape that opened in front of me I realized what Lapland's untouched nature really meant. Even thou I had never experienced that sight before, I felt like I belonged there, in this country with that nature and landscape. In my heart I really felt I belong to Finland.

The same feeling of peace and rest surrounded me also across the border in Norway while driving on the shores of the Arctic Ocean. All those tones of blue and grey and mountains with snow behind a calm fjord really match with finnish souls. Small and simple towns with rivers bathing in summer sun.. There was no rush. Time and space seemed to last forever.

Next to those mountains and the ocean I felt so small and meaningless. Nature makes a human encounter his own limits, and so you have to put your hope to something else. When you can't make a difference you have to let go and trust that someone will catch.

Sometimes it feels the same with scleroderma. Something is affecting you in your body, some force that you can not control. You can't do anything else except wish that someone or something would be strong enough to change it. I wish we could turn worrying into trusting: Worrying only makes us see things we don't want to experience. When we trust we start to affect the thing in a positive way, with a force inside of us that we still haven't discover.

We made it home safe and sound with sunshine making each day so bright. I've had a chance to experience great "last moments" before my civilian life ends and I feel ready to move to the next level. I still had to get antibiotics yesterday for sinusitis so I hope I'll get better before all the exercising begins.

You would not believe your eyes

if then million fireflies

lit up the world as I fell asleep.

Cause they fill the open air

and leave teardrops everywhere.

You'd think me rude

but I would just stand and stare.

With love,

Emmi

EULAR - Rome

2010-05-25T16:22:00.002+03:00

Hi all, it's been a while again. Life's been full of events and incidents, like me getting two colds within one month and so. Tomorrow I'll hopefully complete the lasts exams for this year, and for the next. Then it'll be over for a while.

What I've been wanting to say for weeks now is that I've been better. Physically I'm in a pretty good condition now, despite all the little flus along the way. Even thou my muscles are killing me at the moment because of exercising quite hard on Sunday. But you know what, that's just healthy. I'm feeling good and alive. How wonderful is that.

The other reason for me being happy is that I'm doing it again this year! Like some of you guys might remember, I visited EULAR The Annual Congress of Rheumatology last year in Copenhagen. I went there for my essay about scleroderma. This year I was invited again as a volunteer. But this year the whole even takes place in Rome. I've never been to Italy so it is a wonderful opportunity for me to see a new piece of Europe and get out of Finland for few days before my military service starts. During that year I won't be able to leave the country at all.

But the best part of this congress is to meet all the nice people from last year again. I've missed the feeling where you're surrounded by people who totally get you and your condition. Even thou I'm much better now, these moments in a life of a sick person are so valuable, priceless. I wouldn't trade it for anything.

So that's what's up for now; Loads of exercising and a little bit of scleroderma-related traveling, the greatest activities life can offer. Lets enjoy these moments and this summer to the fullest.

Love

2010-05-11T16:24:00.002+03:00

This entry is related to a bit older one called The Sclero-Effect: Love. I've been writing about the subject in my previous blogs before, and still I'm thinking the same thoughts.

Mitä rakkaus on?
Sitä kerran hain.
Hetkenkö huumaa,
vai valhettako vain?

En tosiaan tiedä.

What is love?
I wanted to find that once.
A moment in time,
or just a lie?

I honestly don't know.

I can not define love or even tell how it feels, one has to experience it himself. But every once in a while I still come to think of it.

To me God is love. Love derives from God. God is good, and everything he does is good, so love has to be good too. Love doesn't hurt you like some cynical people may tell you; People hurt. Love is meant to heal, no to break. Demolishing is not love, when that happens, it's caused by some other force of nature.

If we try to guide the energy we call love to the direction we wish it to head, we'll end up with anxioty and desperation. That energy is meant to be wild and free, it's meant to guide us, not the other way. If this energy, love, is good, won't it lead us to the right direction?

The same desperation and anxioty will be your part also if you try to deny or suffocate the enrgy, or if you're afraid of it. Living might mean taking chances but they're worth taking. Loving might be a mistake, but it's worth making.

The sad fact is that hardly any of us who read this text will make oneself's name in histroy as a great artist or musician, warhero or leader of a country. It's likely that none of us will be the next Mozart or Michelangelo or what ever. But if you by loving someone touch a person's life, change it to a better direction, even for a moment.. That's valuable. Maybe even so valuable, that you can say you've succeeded in life. You've given someone love, brought his/her life something bigger than thought.

I couldn't have written these words without those great artists or pieces of art from where I've stolen these thoughts. Hardly any of those people will stay in history, but if they've made me understand something like this, maybe they can say they've succeeded in life as well? If I could make someone understand that he/she is valuable, I could say I've nailed it. The Bible, Paulo Coelho, Lee Ann Womack.

I've learned to love by myself, it's been easy for me because I've always been loved by my family. But I couldn't have been able to learn to understand it without those people listed above. Thank You.

RIIHIMÄKI II/2010

2010-04-28T20:49:00.003+03:00

I MADE IT!
I f****n made it! I'm so happy, this is a very weird dream come true!

I'll join the Finnish Defence Forces on July the 12th 2010.

After all the stressing, worrying and planning, I was accepted into a voluntary military service which will start for me already the next July. I am so amazed by this that I don't really know what to say here, but I know that since July the 12th this blog will turn from Living with Sclero into a Sclero in the Army now. I hope you guys will still be here with me supporting, reading and commenting my life and thoughts and all the obsticles beaten that will cross my way.

The Sclero-Effect: Love

2010-03-29T12:26:00.003+03:00

This is a hard post for me to write, since I have no idea how I should handle this. I'm not going to publish all that I want since I know I can not, but I want you to know there's much deeper feelings beneath this entry than what might get through.

Not so long ago, on a calm night spend with a friend I received probably the most important text message of my life, followed by one of the most meaningful entries I've ever read in my life. I think it was dedicated to me, and it was about love. It was about a friend, a very important person in my life, and it was about many things. To me it was also about scleroderma.

In October I wrote an entry about The Sclero-Effect; How people see me and how my scleroderma affects them. I reffered to a friend who had said that my sclero had changed his life. The entry I received that night was about this.

"About 5 months ago I tried to kill myself." The most scaring 9 words of my whole life.

But as it turned out, we got to know each other well soon afterwards. I needed you to listen to me and you needed someone to keep you sane. You got to know scleroderma and I welcomed you into my world by showing you that I've fought. You started to fight as well.

I think you know I've needed you at least as much as you've needed me, and most of the times I feel like I've needed you even more. We've kicked the World's Ass together and I wish more than anything that you'll be beside me in this universe for as long as we exist.

In The Sclero-Effect part 1 I wrote:

"The sclero-effect. What is it then?

It means change.

It has changed minds, ways to think.

It has changed the way people see the disease,

see the world,

see me.

It has changed me.

It has changed the future of mine, it has changed the course of a life of a dear friend. It has changed someone's attitude, another one's opinion.

The change hasn't always bee positive, but I've lived with it a long time, and most of all I've seen it building, not destroying."

It has changed a course of our lives by building love. It is not likely to happen, but if this disease is someday going to kill me, at least I can die knowing it had a bigger purpose and it filled it. For more than once when I've felt sick I've gained the strenght to carry on by thinking about how great things this sickness has created.

You'll always have a bed to sleep at my place.
Always.

Love,
Emmi

Hello World

2010-03-22T11:08:00.001+02:00

Hi there. I've been working on an entry that's very special and very dear to me that I want to make meaningful. I've also been more active on my finnish sclero-blog since I'm translating my old entries from here to that blog so I can update these two blogs hand in hand.

My life's been quite hectic otherwise too. I get up at 8 am, work out a lil bit, go to work, from work to school, and from school to gym so I'm at home after 10 pm again. I work on 4 days a week and got school on 4 days too so I'm either on work or school basically every day, some days both.

This week I'm only working 3 days so I have a little "holiday" from thursday to sunday. At some point of this period I promise you: You'll get this entry of mine I've been working on.

And oh: On April 28th I'll hear when and where I'll be serving for The Finnish Defence Forces. Wish me luck!

Palveluskelpoisuusluokka A

2010-01-31T01:24:00.004+02:00

January 29th 2010 was the day of doom for me.

Since I was a little girl I always wanted to be a police officer, like my dad. He's actually a Detective Chief Inspector, to be correct. In junior high that dream turned a lil and to be a pilot was what I wanted to do for living. Like I've implied before, I arranged all my plans, my school studies, everything according to that goal.

I had lived with scleroderma for more than 10 years at that time. It was considered as an inactive a disease and that was perfectly fine with me. Then, all of a sudden, it rose its head a lil bit; Some new symptoms arrived. The cycle started: I started to medicate my sclero which actually didn't need to be medicated at all. That medication made me sick, so in the end, I was basically medicating my medication. How f***ed up was that?

At that point I gave up all of my dreams. I was so sick, tired, weak and pathetic human being that there was no way I could've become a pilot or a police officer in that condition. There I was then, in the middle of cruel high school world, with no plans, no hopes, no dreams for the future.

I quit the meds and everything was fine, before birth control pills. They activated my diseases and it all started again. This got so far that last spring, even few months after quitting birth control pills and most of the symptoms gone they were still checking out my internals for possible damage. Thank God they found nothing. No GI- or lung changes, no failure of a heart, no damage, nothing. Except on the skin of course.

I ended up applying to Helsinki University of Technology for mechanical engineering, which is actually quite interesting I think. But for the whole last autumn and winter I've been listening to me saying: "Oh I wanted to be this and that but I didn't even applied cause I know I wouldn't make it. I'm not healthy enough." And at the same time, I've been starting to feel better and better, more alive and healthier as the weeks go.

So one day, I decided that it had to come to an end: I'm not a quitter. I can not give up all of my dreams for reasons I can not affect. All these years I've been thinking "I can not do this, I have scleroderma." But now I've grown to see that it just ain't so: I want to at least try. I have chances just like everyone else, I have motivation and a lot of mental strength. Why wouldn't I make it?

The first step, is doing optional military service. In Finland it's compulsory for boys, but women can do it too. It is almost a necessity if I really wish to have a career as a police officer or a pilot or in the defence forces. And that's what I'm going to do.

Yesterday, on January 29th 2010 I had the doctors appointment I had been waiting for weeks: The Call Up Checkup, or "enrollment for military service" - checkup. It basically defines my chances to do the military service: Class A women are always accepted, with B in the papers your chances of getting into service are really low, and with C (or any other) the chances are basically zero.

I was so nervous before the checkup. Having no idea what the doctor might say, I had a statement from my dermatologist saying that she doesn't believe that my scleroderma could be a blockade for doing this. If the result would've been B or C, my chances of becoming a police officer or anything I've always wanted would've been very, very low. I had just gotten my hopes up again, I had dared to dream those dreams I had already buried deep down.

All those tears I had cried for losing my chances, all those sleepless nights and stressful days with plan Bs and Cs for my future.. All of a sudden they were all in vain. I told the doctor that I feel healthy. Occasionally I feel sick like everyone else, but I cannot compare my situation to anyone else's since I'm not them. I don't know what healthy really is. But I do know, that I work out six times a week just that I'd be able to complete my service with great statements, beat the guys or at least be as good as them. As able as everyone else. And after a small chat, she did it. She checked the "A-box."

The first thing I'll do on Monday morning is to go to the post office for sending my volunteer application for the Finnish Defence Forces. With that beautiful A in those papers it's is almost 100% sure that I'll get accepted, and sooner or later I'll take the first step of making my dreams come true. I hope you'll be here following how scleroderma will make it trough the army.

CHAPTER 2

2010-01-15T09:31:00.002+02:00

This feeling has been building itself inside of me for a couple of months now. For a whole sick autumn it has been growing, weakly, being shy and waiting for its time.

There's always been a spark of hope inside of me, despite how much bullshit I've had to go trough. A spark that has made me go further when I've wanted to quit. I've been amazed by that spark myself, since I never thought I could be that strong of a person. I've always admired others keeping it going but lately I've noticed doing that myself too.

But all of a sudden that spark has turned into a bonfire.

It is a total of many factors. It needs something to burn, the material: That is my dreams, my goals. It needs oxygen to keep it burning: In my case that would be doctor's statement. But first of all it needs a primer: An example, an image to follow, strong motivator.

I'm feeling better, I'm getting better. I've decided that the year 2010 will be different: It will be better.

There are things you just can not affect in your life. Things that will change you and your plans despite your will. But we gotta try to make the most of them, beat the obstacles and make our own dreams come true: No-one else will do that for us. If you wanna win the lottery, you still need to fill in many many lottery coupons in an order to achieve your goal.

So this is Living with Sclero going Chapter 2: Stronger and better attitude equals not giving up. Balancing between what's right and what's better than that.

I have two entries coming up but I didn't want to start them before announcing this state of mind with which I've been waking up for a while now. I'll explain this all a bit later.

Happy New Year

2009-12-30T22:10:00.003+02:00

This is a picture I took with a friend just couple of weeks ago near where I live. By bringing you this image of my life I just want to wish you all HEALTHY AND HAPPY YEAR OF 2010. Keep on blogging and commenting, and our relationships will deepen and we'll keep on learning from each other.

Also, THANK YOU VERY MUCH for being here for me, as a source of an inspiration as well as a great support. Thank you for existing and sharing your existence.

I did write that one entry I promised to create before the year changes, so this is already a second one. I just thought I'd give you guys a quick update about those lung problems I've kept on referring to.

I think it was way back in October when it started: Terrible couching, which I thought was a normal flu. Apparently the cause of it was no virus nor bacteria, but because of fever and couching I took some time off from work. I felt better after resting but the couching remained. This pattern repeated itself; The first week couching was something you could live with, the next there was temperature and I felt really sick. It's been like this for almost 3 months now, and the couching doesn't seem to ease.

X-Rays, nothing.

CAT-scan, nothing.

Asthma, no.

Virus, still no.

Bacteria, the same.

The best answer I got was "Well, if it still continues, maybe you could try some antibiotics."

I'll tell you guys, if this still continues next year, it's antibiotics the day I return to Finland.

BUT the main piece of news I wanted to point out here is that there's nothing drastically wrong with my lungs: Even thou I'm having symptoms of flu all the time, they're telling me I'm perfectly healthy. I've been thanking God for days now for hearing that it's not serious. Now I'm able to plan my life the way I want to do it.

The third and probably most meaningful entry that I've been talking about will take place after I come back from London. Yes my loves, TOMORROW I'LL BE OFF TO LONDON, UNITED KINGDOM, for New Year's Eve Show with Darren Hayes at Club Colosseum! C ya there.

Blame

2009-12-29T00:28:00.002+02:00

This entry is totally dedicated to my one and only sweetmango. She is the sweetes.. A mature and balanced mind that has thought me a lot during the time we've followed each other's blogs.

I have not gotten so deep into many entires for a while now since my life's been upside down in every possible ways. But couple of weeks ago there was this one entry in particular that caught my attention. The day I discovered this one I didn't really have too much time to go deeply trough it, but I knew it would be something that I'd need to read. So I saved the link and got into it couple of days ago.

The entry starts with a quotation of Wayne Dyer: "All blame is a waste of time.. Regardless of how much you will blame him, it will not change you." Which is according to sweetmango, and I deeply agree, a very profound truth.

See, I've been thinking about blame quite a lot lately. I've had some hard time with all of this sickness for the past couple of months but I've never given in to blame. Not for once during these years of battling these diseases I've blamed anything or anyone for my part in this world.

Except for now. This one day I spoke with my pulmonologist on the phone. For weeks I've been sick, something going on in my lungs but no X-Rays nor CAT-scan showed anything exceptional. I don't have asthma, and it's not supposed to be any virus or bacteria. So this sweet lil doc of mine informs me "Well, I can not see there's anything else I can do about it." What-the-f....?! I'm 19, and I've been sick for two months now, and you don't have anything, anything at all that you could try for me to get healthier?

For a five minutes, I blamed the system. I blamed the doctors, I blamed the whole f'n finnish health care system, I even blamed my friend's brother for God's sake. Then I started to blame myself.

Loosing health makes you automatically blame. It makes you blame anything that's possible to blame.. Genetics, God, society, health care. It's a normal reaction and it's kind of understandable. But like sweetmango wrote: "Blame is a distraction, that is all. We are trying unsuccessfully to distract ourselves from our own truths that we find most uncomfortable by assigning the cause of our suffering to another. We can blame all we want, we can blame him, her, them, God, whomever we wish, but it does not change our situation. It doesn't even make us feel better, it only serves to delay the inevitable, that we must face our own truths."

As long as I've had some sense with these conditions, which would probably mean the last two years, I've mostly blamed myself. Not for the whole deal, but for those days that I feel most exhausted, it's usually a result of my own choices. In this case, I think blame is actually welcome: It makes you see what you do wrong, what you should do differently.

With sense, everything you encounter in life, can grow you. But if you turn this blaming-yourself-thing into something that controls your life too much, it will just make you drown. It captures you, holds you as a prisoner, pulls your strings and suffocate you. We all should remember that: "We make decisions along the way that affect everything in our life, that affect us now, or in 10 years or 50 years from now. We make some choices now that will continue to affect people well after we have left these physical bodies. Other people make decisions that affect us, in both subtle and profound ways, their choices can influence our own choices for the good or the bad. But we need to be aware that assigning blame will do nothing to resolve a situation or fix a situation. True strength of character lies in the understanding that assigning blame will never allow us to grow, it will not allow us to move forward and it will not release us from the pain. It is a complete waste of time, it is feeding energy into an already energy draining situation."

Sweetmango also wrote about blaming when you're facing an illness: "You can blame yourself for past choices that may or may not have lead you to where you are or you can raise your fist to the sky and blame your God but both are a waste of time. At this point in time, it is no longer important why, or how you came to be on this path, the focus should shift to the path not the villages you passed trough to reach this point. Blame will not help maintain a level of wellness, in fact it is extremely toxic to the physical body since blame falls under the category of anger which disturbs the delicate chemistry of the brain, disrupting normal bio chemical reactions that take place in the body's regulatory systems, it is most unwelcoming when you are fighting any sort of illness. Instead we must focus on what we can literally and physically do to maintain a system of balance within the body to help counteract the illness." And you know what? She got it very right.

Stop regretting, stop blaming. Learn from your mistakes, and breath.

You remember me being all about "the positive attitude"? Well, we're coming back to it, once again. Don't waste your time and energy, don't waste yourself by being angry to something or blaming something you can not even fully understand. Study it, learn about it, and leave it. Give yourself a greatest gift you ever can: Focus your thoughts of getting better or maintaining your remaining health. Why would you want to be bitter if you can have a choice of living?

Hanging onto the feelings you had when you first discovered that you're sick ain't healthy for you. You can spend hours and hours of blaming all the world by yourself or even with someone, but it won't get you anywhere. Instead, focusing on something constructive will improve the state of your mind and life within days.

For those five minutes I did blame the doctors. I did blame myself and I still sometimes do. At those moments I slow down for a minute, and calculate wether I deserve the blame or not. If I'm extremely tired and hurt on the morning, is it because of clubbing late at night or not? If it is actually is my fault, that I am not feeling the way I want to feel, I learn from it, and take it easier next time. But I will not stop to mourn on it, no way. It's a new day with new chances.

Christmas

2009-12-24T13:03:00.003+02:00

MERRY CHRISTMAS TO ALL OF YOU HERE IN BLOGSPOT.COM!

I know I haven't been too active lately but there's been a lot on my plate lately. I have three important entries on my agenda at the moment and I will work on those right after spending some time with my family.

I also want to wish you guys an awesome New Year 2010! I will be celebrating the change in London for couple of days but before leaving for UK I will definitely update at least once!

Love,

Emmi

Hiljaisuudes - In the silence

2009-11-26T13:16:00.011+02:00

/*/ Note: I've been working with these lyrics for a while now, so that's why this entry is so late./*/

I've been sick for the past few weeks, and just when I thought it was gonna get better, everything turned upside down. Now I've been relaxing at my parents house for a few days, studying physics and maths and listening to myself.

I'm going to get a new job: My health can not take the one I'm doing at the moment. It makes me motivated, excited and happy but at the same time it provides me a very unsure financial situation for the next couple of months. That means a lot more stress but after beating these lung problems and flu or what ever this sickness is, I know I'll be ready to beat that too.

It's a constant battle my life, but whose wouldn't be? I'm lucky, since I've found means to fight back. Scleroderma might win the battle but I'll win the war.

Three of the best ways to fight back are music, lyrics and friends. The next is a combination of all of those three things: A song my friend wrote when he was dealing with hard health issues. Every word he wrote is something I feel coming out of my heart 100%.

The original text was written in finnish. The translation is mine.

hiljaisuudes ittensä vahvaks tuntee,

niin vahvat tunteet vallitsee ku rauhan löytää

viel on aikaa löytää sitä mitä etsit kaikkein eniten

päiväs uudes, kuka täyttää toivees suures,

vai mitä ees haluut tapahtuvan tulevaisuudes

jos et tiedä, ois ehkä jo aika ottaa selvää

olin jo ehtiny suunnitella kaiken valmiiks,

lopult ne jätti käteen pelkän suuren kasan arpii,

arpii, jotka ei koskaan pois kuole,

ne katoamattoman jäljen teki mun ulkokuoreen,

silloin toivoin et viel vanhan maailman näkisin,

mut karu todellisuus repi haaveeni irti väkisin,

oisin paennu, jos se ois tilannetta auttanut,

nyrkit verille hakannu jos se ois tuskaani vapauttanut

lopult havahduin ku syvän unen jälkeen,

tajusin ettei muistelemises oo mitään järkee,

aloin keskittyyn siihen mihin pystyin vaikuttaa,

ja nykyää tulevaisuus paljon paremmalta vaikuttaa

hiljaisuudes ittensä vahvaks tuntee,

niin vahvat tunteet vallitsee ku rauhan löytää,

viel on aikaa löytää sitä mitä etsit kaikkein eniten

Now after I made this translation I noticed something.. The original genre of this song is rap I think, but the translation doesn't sound anything like it. That's the difference between the original song and the translation: The original story is his, the translation is mine.

in the silence you'll find yourself strong

strong emotions prevailing once you've found peace

you know, you still have the time to find what you're looking for

in a new day, who will fullfill your greatest dreams

what do you really want future to bring

if you're uncertain, maybe you should try to find out

i had already planned it all

but in the end all that was left was a handful of scars

scars that will never heal away

they left an incurable mark on my crust

back then i hoped that i could still see the world like it used to be

but the cruel reality was ripping of the bandages

i would've escaped if it had helped

i would've hit hard if it had released my suffering

finally i awaked after a deep sleeping

i realized there's no point in recalling

i started to focus on the things i could affect

and the future seemed much brighter right away

in the silence you'll find yourself strong
strong emotions prevailing once you've found peace
you still have the time to find what you're looking for

Methotrexate

2009-10-29T11:57:00.003+02:00

So, my dermo got what she wanted: I'm on methotrexate now. I have to tell you how much I hate that nauseous feeling I get on the day when I take my pills. This is again one of those course of drugs when I have to medicate my medication.

Lately I've noticed that I've grown a lil more again. You know when you're young and naive you want everything now, as quickly as possible. You can make long-term plans but you don't really understand what it means or what you have to do time-wise to achieve your goal. Well I still want everything now and as quickly as possible, but I know I won't get it without a lot of work. And in somethings even that won't affect how fast things will happen: You just have to give them time to be able to see any results.

I took another job. It's selling mostly, with performance-related salary. The thing is, I probably won't get any money out of it within the first few months, but if I'll be persistent and motivated and will understand the whole business, well then after a while I'll probably be making a lot of money. This might take two or three years and this is very uncertain time in my life; Who knows where I'll be within few years. But I will definitely commit to this job, give it a try and wait to see how long it'll take for me for it to pay off.

It is the same with medication and scleroderma; No-one can promise you any results at all, and it'll take months to see if anything has happened at all. When I was younger, let say two years ago when I was on Oxiklorine, I didn't really understand this at all, so I quit it. I'm happy I did it, since it made me feel so bad physically and mentally. But the younger me wanted results right away. The older me has grown a lil since then.

With methotrexate I feel more sick than I normally am, but I really hope that this phase will pass and eventually my skin will feel lees tight. I know this will take some time and the results won't probably be overwhelmingly positive and seeable, but even a small help is always help. I will commit to this, and I will wait. I'm 19, I don't want to feel sick, and I'm not suppose to. But I have to face the fact that yeah, I am sick. And if I have to feel even sicker in an order to someday feel healthier, I'm ready to do it.

The Blog

2009-10-14T20:16:00.002+03:00

My life has pretty much changed since winning the Edgar Stene competition. Afterwards I got this blog running, people have been more interested in what I have got to say and understood me better. The latest outcome of the Stene Prize is the Finnish Rheumatism Association blog.

The Finnish Rheumatism Association contacted me other day and told me about renovating their website. They had been thinking about adding blogs, and since they've been following this one they asked me wether I'd be ready to do the same in Finnish too. How could I say no to that?

I started this blog in English for one reason only: I knew in Finland there wouldn't be much people with scleroderma or similar diseases, so I'd probably get more followers (someday) if I did it in English. Now that I'm writing for the FRA it means there will be regular visitors in my Finnish blog as well. That is great news, since every chance to raise the awareness of this disease and to share thoughts about life with anyone is a chance - a precious chance, a chance worth of using.

But this has also brought me some pressure. Nowadays I'm not only writing for myself, I'm writing also for my followers. I think too much what you guys might want to read, and I shouldn't be doing that. The best texts always came straight from my heart, my experiences, and thinking about others really reduces the quality of my entries. No matter how hard or sad it sounds, it is true.

I've also noticed that the carrying power of my whole blogging "career" is optimism, positive vibes. That is admired often in the comments I get, and I am happy to hear that it has had an impact on you. It is not fake, the attitude I have. But we all have our ups and downs, and I feel like I can not afford to collapse. If I lose my hope, what happens to those who have believed in me?

I'm not collapsing or losing anything. I know I'll always get back up on my feet, and I know if I should need your support you'd be there to pull me up. I am so sorry that I've been neglecting this blog lately, I promise to write more often and better in the future. Please do not forget me and do not forget that you mean the world to me. You're the best upside of this whole scleroderma-thing that is a huge part of my life.

Thank you.

The Sclero-Effect

2009-10-13T13:47:00.003+03:00

In all of my entries I've mostly focused on how scleroderma is affecting me and my life. That is natural since it is me living with it, but for once I'd like to focus on something else this time. I want to dedicate this entry for the sclero-effect: How does scleroderma affect everyone around me?

I can categorize or separate few different groups of people around me by the way they react to sclero or see it. The way they see me.

First of all there are those acquaintances who has no idea about the whole collection of diseases I have. They don't see that side of me, they don't see all the pain and thoughts. They only see a normal teenage girl, a young woman who lives her life to the fullest. The smiley face and mind beating all the obstacles in life. They don't know where all of that strength comes from, and they don't even wonder it. They just know it is there and think it is a self-evidence.

Every time some of those acquaintances hears about scleroderma, for the first time, they go quiet. They have absolutely no idea what to say, how to react. They will remember it, but they won't think about it too much. Some of them, will understand better. Most of them will never treat me any differently.

Then there are those randoms, usually kids and sometimes adults also who can not stop staring at me in the swimming hall shower or wherever they see the marks scleroderma has eroded in me. It is so funny when you can see a face of a grown up, and that person trying to hide the fact that she just can not stop looking at me. I don't really care, it usually just makes me smile back at them. I want to burst out of laughter seeing how hard time they're having with the simple fact that I am somehow different.

The third group are the friends that know and care. My family and those who I spend most of my time with. They ask me about it, how am I doing and what's going on. They sit with me and listen if I have something I want to talk about. But I've noticed, they don't treat me any differently in anyway. They treat me the way I need: We act all normal when I'm feeling well, but I get the understanding I need when I'm tired and sick.

The only hard case is my mother. She's so concerned about me, about everything, that she gets stressed and nervous, upset even, when I tell her I am not OK. She pours it out by anger and frustration since she can not really do anything to help me. It took me so many years to understand this, and I still think it ain't right the way she acts. But now I understand.

These kind of reacts are all normal and easy to understand. Those are the ways you expect people to treat you. But the last two groups are the most confusing ones, the ones I don't really know how to deal with.

At first, there are the ones who get something out of this. Whose lives have somehow changed due to my scleroderma or to whose lives it has had an impact of some of a kind. A good example of these people are the ones I met in Copenhagen. All of those who came to me because of my text and told me they now believe in themselves because of me. The ones that said that my writing had made them understand or think. I never know what to tell them, what to say or what to do. So I just smile.

The most radical example is probably one of my good friends who tells me that my scleroderma saved his life once. I don't know why but I have the feeling that it is true. It kind of makes me sad.

But the most confusing group of people are the ones that doesn't really want to hear that there's anything, anything at all wrong with me. I don't know what it means really.. But based on the relationships I have with these people have some kind of will to protect me somehow, in a way they themselves can not define well enough. I can not be sure how they see me, but I guess they don't want to see me fall, they don't want to see me being fragile and hurt. Every time I've encountered a person like this it's been a guy with some kind of positive feelings towards me. I'm not sure how I should be when I come across to this. I'm OK with it, and I wish everyone else would be too. But I do not want to upset anyone, don't want to see them having that uneasy feeling about not knowing what to say.

The sclero-effect. What is it then?

It means change.

It has changed minds, ways to think.

It has changed the way people see the disease,

see the world,

see me.

It has changed me.

It has changed the future of mine, it has changed the course of a life of a dear friend. It has changed someone's attitude, another one's opinion.

The change hasn't always bee positive, but I've lived with it a long time, and most of all I've seen it building, not destroying.

Circus

2009-10-12T21:03:00.002+03:00

Hi y'all, and sorry for not updating for a whole month. As you might have guessed, I've bee sick lately. I've had a flu for the last 3 weeks along with job, school, socializing... On top of this all, there are men in my apartment renovating my bathroom so I won't have access to running water, toilet or shower for the next month. No cooking, no drinking, no washing my teeth, nothing. How cool is that.

I saw my dermatologist couple of weeks ago. We agreed that my skin looks better now, much better than a year ago. Instead of being kinda reddish, the sclero areas are now beautifully brown. (Can sclero be beautiful? Well anyway, I'm meaning sclerobeautiful here.) The hard thing is, that all of it is getting tighter. It looks better, but feels more stiff than ever.

And that is why she wants to try methotrexate with me. There's been a lot of discussion lately about methotrexate on localized scleroderma. But the point is, it's been working greatly when the disease is most active, and that phase has passed me years ago. It's active now too, but it kind of comes and goes on undefined periods. She said that there's been an article about a case like me where the patient had really good respond to methotrexate. Yeiy, one case! That's more than none... (Sarcasm? Hell yeah.)

I just have so bad experiences on drugs. I know this will control my whole life when I'll start this, so I'm not expecting anything good out of it. But afterwards I can say that at least I tried. And maybe it could even help me with the stiffness.

That visit to doctor didn't make me feel too good, and the day just got worse when I went back home. As usual, I opened up my MacBook, and started browsing through the usual sites. On International Scleroderma Network forums I heard that a sclero-friend I knew had just died.

I've been there, I've lost couple of sclero-friends before. Every time it feels the same, like you've lost a family member. If I'm being totally honest, hearing about his death felt even worse than hearing about my grandmother's death, which was only few days ago.

I've also been experiencing some financial and social issues meaning I need a bigger salary and less guys around me. I'm too tired to date anyone and there's no-one potential on the horizon either.

But I hope that even thou there are loads of clouds gathering on the finnish autumn sky, it won't stop the sun lightning my winter. I'm starting to beat the flu and get a real grip on all of the school things. I've noticed that having loads of time for myself has been real good for me, and hanging out with friends has been really inspiring.

Talking about that.. On the next entry you'll hear what I've been thinking lately about people near me and near scleroderma. I promise, I'll update sooner than last time!

But you don't look sick - The Spoon Theory

2009-09-07T10:30:00.006+03:00

It's quite depressing waking up in the morning and noticing that you're gonna have to give up the day since you're feeling more sick than normally. Mornings are suppose to be a new start, a new chance, and it totally turns you down when you feel like the whole day's off before it has even started.

I've been having a rougher period lately. I know it's my own fault basically, since I haven't been sleeping too much and such. I have couple of very stressing weeks going on, I don't really want to go to work at all, I have my math studies and university started as well. Two schools, two jobs, friends, family, dancing and myself. I know I should take it easier and I'm the only one to blame. But I know it'll be better after this week, when I'll get rid of my other job. Then it'll be less hours and less sifts but a better salary.

I took today off from work because I don't think I'll do any good there if my stomach hurts this much. I sent a text message to my boss, she didn't answer me anything. It's always so hard to try to tell something that you're sick, when you don't look sick enough. That is why I wanted to share you this story of Christine Miserando: The Spoon Theory. This is something I sometimes use to explain how I'm feeling and what am I going through.

The Spoon Theory tells about lupus, which is a disease that has similar characters as scleroderma. This ain't what I feel daily, but this is something I can use to make people understand. This is the easiest way to get my point.

The Spoon Theory

by Christine Miserandino

www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my

answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of

the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly

confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my

hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially

young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as

standing on a train, or even typing at her computer too long. She was forced to make choices and think about things

differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do some When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate

feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that

frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one

hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans

before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally

understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she

might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends

refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

I have to tell you that I absolutely love this story. Even thou it's someone else's story, it tells about me too. It tells about all of us who find out that some days or all days are a challenge, something you have to balance on every hour. I stepped out of this razor blade last week, but I'll take it back and I'll be better.

After the depressing moments of this morning I realized that this day could after all be a chance to give myself some time I've needed. A chance to relax.

Health and Happiness - part 8

2009-09-02T22:02:00.001+03:00

Health and Happiness - part 7

2009-08-27T20:23:00.004+03:00

So I promised to write yesterday but after another long day I was too tired, again. But now I have all the energy and almost all the time in the world.

I've been thinking about thinking deep thoughts. In the blogging world we almost always think about the big thoughts, big questions, big problems, huge ideas. Deep thoughts and deep feelings.

But there are also the small things, that sometimes are deep, sometimes shallow, that make us happy. Since I've been blogging about happiness I've decided to dedicate this specific entry for all the small things that make me happy. And for once, I'm trying to be very shallow, very girly, very simple and plain.

- I love my new iPhone 3GS, it is nothing less but w o n d e r f u l. I love taking pics about my life, Finland, my friends, everything. I love the fact that there's an iPod in a same machine, playing my good music. The design of this item makes me smile: It's simply beautiful.

- A while ago a friend told me that when there's music and a dance floor, I become a different person. Maybe that's true; The second best thing in the whole world is just to dance dance dance through the night. It totally makes me forget my disabilities, my sorrows, my stress, my worries.

- Music. I love it. I love music that has a message, of course, with deep thoughts. BUT this was suppose to be shallow entry, so I just need to list some of the shallow songs I absolutely L O V E to hear: Boom Boom Pow by Black Eyed Peas, I've got a feeling by the same band, Fire Burning by Sean Kingston, Sexy Bitch by David Guetta feat. Akon, Just Dance and Love Game by Lady Gaga... The list goes on and on! They have the beat, they have the feeling. Oh and two of my favorites are def sure Liekeissä by Cheek and Heruuks? by Fintelligens!

- I love my dancing shoes! Every time I put them on I'm happy. So happy.

- I really really like my new apartment, it's so nicely decorated by me! Happyhappy.

- Cats make me happy by being so funny and furry.

- Sun, clouds and the sky are my favorites as well. Lately I've been taking a lot of iPhone pictures of them, and blogging them on my tumblr-blog. I don't know but they kind of turn me on somehow.

- Even thou I'm a girl, I love beer. A good beer relaxes and tastes good, it definitely makes me smile and enjoy living. My two favorites are definitely finnish Sandels and english Fuller's I.P.A. I highly recommend both of them.

- Blankets makes me happy. A soft couch, a warm nice blanket and a good movie with some hot chocolate and perhaps someone to share the moment with. What a perfect set?

- I love sports and exercising! I always feel so good and smily after practice.

- My life's been pretty hectic lately and I've been very busy, telling my friends always that I don't really have time to do this and that with them. But sometimes, when I have a free moment, I call them to ask weather they'd want to hang out with me. It makes me so happy to notice that they're available, ready to go for a cup of tea or beer with me. The moment they answer "yes" on the phone makes me the happiest person on earth.

- My bright orange scarf makes me smile every time I wear it.

- You guys make my day every single time you blog. I love reading your thoughts, no matter how deep or shallow they are.

- A facebook inbox messages are cool to get, if they're coming from an interesting person or someone you haven't been in touch with for a while. Actually, I think any message for these kind of people are always nice to get.

- Enjoying a glass of good wine.

- My star tattoo! It's simple and small but it is me and it is nice. It has shown me that I can take a tattoo despite scleroderma. So maybe next fall I'll get another one, telling a story about my life. It's something that makes me feel happy too.

- The hour before you go out, when you put a lil bit of make up on, change your clothes like 7 billion times, put high heels on, ear rings.. The moment to be girly! The feeling you know it's going to be a good night out with friends and a dance floor.

- My housewarming party on saturday! Loads of friends coming, how nice!

- My balcony. Even thou I don't smoke so I don't really need it, I love it in various ways.

- I'm saving coins of 2 euros for something. At this point that something will probably be that second tattoo. But every time a get change and it has 2 euro coin in it, I smile. Talk about the lil happy things in life.

- Spotify. Just try it, and you'll understand!

- Reblogging nice pictures and thoughts on tumblr.com.

- My guy - friends who're good looking: It's always nice to hang out with them and look at them, even thou they're just your friends.

- The fact that I'm going to London for New Year's Eve! And probably to Amsterdam sometime soon too yey! I love traveling.

- The bad days, I just love them. I just need to realize when I don't have enough energy to do what's needed or asked, then take a day off of work and life. After a relaxed day you've charged your batteries. It's healthy, and even thou I feel sick then, I know I'll be better tomorrow. That makes me happy.

- The fact that Shemar Moore is like ten billion times hotter than Will Smith.

- Metros, trains, cars and busses. You just sit there, listen to your iPod and watch all the people around you. Sit and relax. Those lil moments I need in an order to keep my head straight.

- Candy!

- When I know a lyrics to any song. I love singing along!

- When mummy has made good food, like chicken or mushrooms, yummy!

You see now: With scleroderma, with Raynaud's, with Scoliosis, with Vitiligo, with Migraine, with Reflux, I can still enjoy lil normal things. There are things in every day life that make me smile. I know there are things that make you smile too.

I could keep on updating this list for a whole night, but I thought it's YOUR TURN to tell me what makes you happy, the lil shallow things in life. Just make an entry about this, and post a comment with a link to it, so I can share it with my readers too. Share your happy moments to make others happy too. :) Share the happiness!

Exhaustion part 2

2009-08-25T23:30:00.002+03:00

Hi y'all,

I was definitely suppose to update today. I've been thinking about a smily topic for a while now and I think I finally got the core idea, but I am too tired to share pieces of my life tonight with you guys. I'm exhausted: We had a very busy and very long day at work today, and I haven't been sleeping too well last night. I feel emotionally bad since I've been eating too much lately and not exercising enough. Tomorrow I'll work out again! And I believe that from that I'll get enough energy to make a better entry.

I just wanted to say how much I've been enjoying your posts lately. Thank you for always making my day.

Emmi

Stronger

2009-08-21T10:58:00.005+03:00

"Wisdom is nothing more than healed pain."

- Robert Gary Lee

When talking about loss, the feelings after it are usually the same, no matter what the subject has been. So in every song telling about lost love I find something about lost health as well.

My perfect scleroderma-song is absolutely Christina Aguilera's Fighter. I feel powerful and alive when I'm listening to it, it is my way to express the anger that might be hidden sometimes somewhere deep down in me. If I was a great dancer I'd definitely make a huge choreography to this one, and perform it with someone. Maybe someday I will.

When I, thought I knew you
Thinking, that you were true
I guess I, I couldn't trust
'Cause your bluff time is up
'Cause I've had enough

I've had enough of venting, I've had enough of sclero controlling me.

You were, there by my side
Always, down for the ride
But your, joy ride just came down in flames
'Cause your greed sold me out of shame

Always waiting for my best moment to start progressing again, always sneaking there, quietly waiting, not affecting but causing constant fear that something will some day happen.

After all of the stealing and cheating
You probably think that I hold resentment for you
But, uh uh, oh no, you're wrong
'Cause if it wasn't for all that you tried to do
I wouldn't know just how capable I am to pull through
So I wanna say thank you

I wouldn't be this person without scleroderma, I wouldn't be this strong. I woulnd't think this way, this blog wouldn't exist. This has thought me that I am capable to pull through. There's nowhere to go but through.

'Cause it makes me that much stronger

Makes me work a little bit harder
It makes me that much wiser
So thanks for making me a fighter

Due to scleroderma I am a fighter, a stronger fighter. I try harder in every area of life.

Made me learn a little bit faster
Made my skin a little bit thicker
Makes me that much smarter
So thanks for making me a fighter

Sclero has made me learn things many of my age doesn't even have to think about. But the funniest part in these lyrics is "made my skin a little bit thicker" since that's what scleroderma does, literaly. But the idiomatic work of the expression works in my case as well.

I think it's bullshit that time heals the wounds, since it leaves scars. The thing is, we all have scars; Some of us carry them inside, some of us carry them outside. But most of us carry them both ways.

If you think about a cracking bone, it gets only stronger when it gets better. So do we. Due to those scars we grow stronger, wiser. Wisdom is nothing more than healed pain.

Health and Happiness - part 6

2009-08-16T17:01:00.004+03:00

I know this is my third time to post today, but when you feel like you have something to say you have to say it. Today I came across to a picture in blogging world, and it brought back memories.

It wasn't too long ago when I was talking to a friend. I told him something I've never actually spoked about with anyone else before.

When I was a kid, around 10 years old, I remember lying o

n a bed with my mom, watching TV. We were talking about all kinds of normal stuff kids talk about with their parents, but suddenly I asked my her: "Mom, do you think anyone will ever love me even thou I have scleroderma?"

I have absolutely no idea what she answered to me, I bet it was something positive.

This memory crossed my mind when I found this particular picture just a moment earlier today:

Those sentences are so beautiful, so light, so comforting. They don't have any requirements like those quotations about happiness I've been blogging about earlier: They just say the truth, simply the truth. Why wouldn't I be someone's reason to smile just because of scleroderma?

I wish you will always remember, that you're somebody's happiness too. You're my reason to smile.

Pain and Discomfort

2009-08-16T14:54:00.002+03:00

The most uncomfortable situation I've ever been in was when I had my esophagus checked on endoscopy couple of weeks ago. I have a phobia of throwing up and I tend to be very grumpy when I'm hungry. Before this operation I had heard loads of terrible stories about endoscopy so I was totally terrified the night before it.

I wanted to clam myself down and I decided to do what I do the best: I searched on internet about pain and discomfort. I found out so many wise quotations which I blogged on my tumblr.com - blog. This had a huger impact on me than I'd ever thought.

The power of mind is huge. I was sitting there, waiting for my turn in the hospital with my dad. I remember I was reading a magazine but I can not remember what was it about, cars probably. The nurses who walked by looked nice but I could still smell the too clean smell of hospital and see the bright white walls and floors... I've never hated hospitals as much as I hated that morning. They didn't let me eat anything that morning, so I was hungry and tired and scared.

Finally they took me in and I actually had to convince them to do the endoscopy to me since I had just had a terrible flu and I couldn't breath through my nose properly. Then they started it; One nurse was holding me still, the doctor was pushing 70 cm of a tube into my throat while the second nurse was pulling pieces of my esophagus out. They put some kind of billet in my mouth for it to stay open. I was throwing up 15 minutes in a row, even thou nothing ever came out except a lot of bile and other slime. I couldn't swallow them because of the billet, so everything was covered in that slime and my tears just rushing their way out from my eyes. I couldn't control my body at that moment at all, I was panicking, I was in a shock.

At some point I understood someone was talking to me, saying breath deeply and calmly. At first it was hard to follow that piece of advice but I forced myself to relax a bit. All of those quotations I had blogged last night came to my head, and I started to repeat them by myself, on and on.

"Pain is inevitable, suffering is optional."

"The pain of the mind is worse than the pain of the body." - Pubillius Syrus

"Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever." - Lance Armstrong

Those were helpful at that time, and they still are when I'm feeling down. But the most important one, the one that really got me thinking "I'm strong, I'll get through this. It'll be just fine" wasn't actually something someone famous had said. It was the one that has been important for me for a long time now, the one I'll someday tattoo on me.

"Be strong and courageous.

Do not be terrified;

do not be discourage,

for the Lord, your God,

will be with you wherever you go."

- Joshua 1:9

My endoscopy was probably nothing compared to what someone else has been through in their lives. But my point in here was that no matter how scared you are, no matter how uncomfortable the situation may be, no matter how painful your life is, it can be won, it can be overcome.

After all, pain is your ally. When you feel pain you know you're still alive.

Health and Happiness - part 5

2009-08-16T14:09:00.006+03:00

There's a huge confusion in my head at the moment. There are few subjects I've been wanting to write about lately and now I've decided to combine them all under one topic, just to clear my brain a lil bit.

A while ago I watched a movie called The Curious Case of Benjamin Button. My dear fellow blogger Deboshree just wrote about the subject. In this movie the main character Benjamin is born as an old man, and grows younger. His life goes backwards and he experiences life in a different way than any other person ever.

Since I've been writing about happiness a lot I've also been thinking when did I become unhappy at all. You all probably remember that when you're a kid young enough you don't really worry about anything, you don't know how. You don't have responsibilities, you don't understand what happens around you.. You just enjoy the fact that you're there, you're alive.

I think we become unhappy when we start to understand things better. We have this feeling that something should be differently, we just don't know what it is and how to fix it. We find out that there's so much to understand about life that we can never fully get it all, and that frustrates us. We start to fear everything that is unknown. And the more we understand, the more we are scared, since we come across to more questions than ever.

What we should do, and how we should actually live is like Benjamin, kind of. In our minds we first grow up, understand more, think and process more. But at some point, we should start growing younger. If we rejected all the thoughts of finding out the meaning of life, all the ethical questions and dilemmas, the obsession to know everything and started enjoying the fact that we're here and free to live, we would be happier. Happy as kids are.

In Finland we have saying that "Information increases suffering, but unaware lives like deaf and blind." That is true, and it's complicated. But when you have complicated diseases like me you got to know what you're up against. Or what is standing on your side.

A friend wrote in her EULAR 2009 Edgar Stene competition essay about her rare disease, Lupus Erythematosus. She wrote about confronting an intruder, a stranger who's suddenly a big part of your life. This is how she wrote about the intruder, lupus: "So if you don't want to be haunted by unexplained fears and pitiful glances, you try to get to know him better and think why not make him your friend. It is true that when something is not widely known about or even worse, completely unknown to you, you are afraid. However, if you decide to light up darkness, it is no longer dark anymore and things become less scary." I have no other option than to agree with her. She's so right here.

We have to get to know these kind of big things that have a huge impact on our lives before we can accept them and let them go. Then we can start living free, and be happy.

Wisdom ain't nothing more than healed pain.

Update

2009-08-14T12:02:00.001+03:00

I know i've been lazy with blogging lately bur i don't want to write anthing without meaning. Right now i'm sitting in a Café in helsinki, just came from my rheumy-specialist app. I'm a lil frustrated with this system but it was good to know that there are no signs of systemic sclerosis in me. My lungs are ok, heart's fine, x-rays were good. The only big problem right now is reflux, since my esophagus is a bit messed up due to it. But it'll be fine in the future.

More update when i get back home. Now excuse me ladies and gentlemen, i have a date

Health and Happiness - part 4

2009-07-30T16:34:00.004+03:00

Omg this is something I came across while doing my every day tour on internet: One of my favorite websites ever is I Can Has Cheezburger? and I tend to blog their pictures on my tumblr-blog almost every day. I always choose the best ones according to my thoughts and desires.

This one was so perfect I decided to blog it here as well. This is all about my last entry Health and Happiness - part 3. This specific picture describes that specific entry better than anything else. It's not total bullshit that "A picture tells more than thousand words."

So here you go guys: This totally made my day. Hopefully it'll make yours too!

Even the Happy Cat knows you can sometimes run out of happy. But sooner or later, after you've charged your batteries, you just get right back on your feet!

Health and Happiness - part 3

2009-07-27T11:16:00.003+03:00

People with too strong opinions usually irritate me a lot. It makes me ask how can anyone feel only that way? Is that possible to be so close minded? I personally feel that you have to consider every side and option of the deal before you sign it and make it your official argument.

I've been thinking wether my "Be Happy" - attitude irritates many. For example, if I had just been diagnosed with some disease and someone would come to me and say "Don't feel like that, smile and you'll be perfect!" I would probably slap that person.

Like I've said, this has come to me pretty easy since I've grown up with this disease. But even thou I've got a very positive attitude towards it, even I've had rough moments, believe it or not.

The first time I remember was when I was around 10 years old. We were lying on the bed, watching TV with mom. I remember me asking her "Mom, do you think anyone will ever love me because of sclero?" I think she answered yes.

The last very confusing period was in Upper Secondary School when scleroderma started to progress aggressively. Reorganizing all of my future plans wasn't easy for a lil girl with a strong view of what I wanted to do in my life. But I made through it, and now everything seems more clear than for a long time.

I've had my downs. I've cried alone for hours. I've felt lonely and useless. I've felt ugly and sad. I've felt sick. The one thing in common of all of those moments is that I've felt bad. And when you start to think about it, who really wants to feel bad? Not me, I guarantee.

I feel that those moments are really important for human mind. They make you stronger. They make you value the good times. They make you want something better and fight for it. They build you, they shape you. That's why we all should have those moments every once in a while.

You can understand that statement only if you have a solid, positive base on your mind. That base is the thing that makes you get back up after you've had that bad moment. With that base you can trust that you'll be alright again, and you can have your bad day or bad week or even a bad month knowing, that you'll get through it as a stronger person. Everything will be fine.

"Fall down seven times, get up eight."

That's why it's worth of being happy.

"A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort." - Herm Albright

I would love to add a great song in here, which on my opinion has great message, great lyrics. If you just have some time, please listen to it: Stereophonics - Maybe Tomorrow.

Health and Happiness - part 2

2009-07-21T21:25:00.003+03:00

At my last entry Health and Happiness - part 1 I was referring on Roy M. Goodman's quotation "Remember that happiness is a way of travel - not a destination." This particular quotation caught my eye and made me think for a little while, which became a longer while. This was a very strange thought and I didn't understand it at first. Why would anyone think this way? I asked myself. Doesn't everyone want to be happy more than anything else? I questioned it first but then I understood.

When you start to think about it, the word destination, what does it bring to your mind? OK well, I'm a serious traveller, so at first I started to think about all the places I've been, the destinations of my adventures. But that sounded too superficial: in real world I can not travel to Barcelona by happiness, I need an airplane in an order to get there. To what destination could happiness lead me then?

Even thou I've been avoiding this question for years, I come to it every now and then. It's the Big Question everyone tries to find the answer to, the big question never been solved. What is the destination of life?

I'm a little religious person, lutheran who believes in God. But I don't think I'm close-minded, I think I understand the points of other religions really well and I can co-operate and get along with people from very different cultures nicely. So to me, the final destination of my life would be Heaven of course. But this answer didn't satisfy me. What about other religions then? What is the destination in them?

Nirvana, enlightenment, Heaven.. I made a little research among the big world religions even thou I know them pretty well already. I found out that the very inner idea of the destinations of all of the religions was the same, only the way to reach it varies.

Are you starting to understand what I'm chasing here? What do you think is what every leader of a nation in the world wants? What do you think is the thing people chase in their busy and hectic lives but still it hides itself so well? What do you think is the destination you want to reach in your life? Where do you think happiness could get you?

Peace.

Peace is the answer, the very final destination that everyone of us searches. This also comes to you when you're sick. The final destination with your illness is that you could be in a peace with it; You understand it, you can live with it. You don't have to love it or like it, but you have to accept it as a part of you. Not as a fault, rather as a special character that shapes you.

If you only vent and plead about you losing your health, worry about everything, I can see no way you could ever reach this destination, which would make your life a lot easier. But trying to keep positive, still seeing all the goodness and beauty in this world and especially in you, you will finally open your mind and understand.

The funniest thing is that I had already realized this before my speech in Copenhagen, but I wasn't aware of it until now. See, in my speech I wrote "I've lived with scleroderma for 13 years now, I've had time to think about this and I could say that I'm pretty much at peace with the subject by now." So happiness, the positive attitude I've had, has got me here. I feel like I've finally tamed this huge thing called scleroderma affecting my life, and now we're living together in peace, side by side, hand in hand. I just wish that someday I could be in peace with myself too.

Next on Living with Sclero: Health and Happiness - part 3: Search of happiness continues

Health and Happiness - part 1

2009-07-10T20:37:00.004+03:00

So, as I've told you guys earlier, I've been making a research about happiness.

I love life, happiness and smiles as much as I love quotations. Mary Pettibone Poole, an author of A Glass Eye at a Keyhole (1938) once wrote that "To repeat what others have said, requires education; to challenge it, requires brains." While I was diving deep down into the source of happiness by reading quotations about it I find out that I'm lucky enough to be educated. But I became even happier to notice that I might actually have some brains too.

My main goal was to figure out weather you can be happy even thou there's something major missing in your life: health. I got this idea while I was speaking in Copenhagen: I was talking about happiness and how it's much better to be positive than negative about life. After my speech I got kind of confused: I wanted to find out more about the subject I was talking about, so I could really say that I know something about it.

At the beginning of my search I pretty soon noticed that in many quotations health is related to happiness. Albert Schweitzer, a French philosopher and physician (1875 - 1965) said that "Happiness is nothing more than a good health and a bad memory." I, myself, have it the other way: I have bad health and good memory but I still feel myself happy most of the times. How can this be?

When I found Jean Jacques Rousseau's thought about happiness I realized that frenchmen know nothing about the whole subject. He suggested that "Happiness is a good bank account, a good luck and good digestion." Digestion is another thing that is usually pretty much fucked up with scleroderma patients. I'm not very lucky person and I definitely don't have too much money since I'm a student. This would mean that there's no way I could ever be happy in my life, but I refuse to believe that this is true.

So as I do for French cars I do for French thoughts: I leave them for others and focus on the real deal. What other aspects there are in life that could make you happy, other than health?

They say that "Money doesn't make you happy, but not having any money makes you unhappy." I believe that it is very true, and I'm pretty confident that you all have noticed this as well. Kin Hubbard, an American cartoonist, journalist and humorist knew this already before the 20th century: "It is pretty hard to tell what does bring happiness; poverty and wealthy have both failed." When I found this out I came to a conclusion that money is not the way I should be looking at if I want to find the answer.

A recall the Opening Ceremony of EULAR Congress 2009. There was this hostess speaking about Danish people and British people. She said that according to some research danes are the happiest nation in Europe while britons are the unhappiest. She thought that the reason for this might be because brits have high expectations about life and when everything doesn't go like in the movies, they get depressed. Danes in the other hand always expect everything to go wrong and when they don't they are happy since things could be much worse. I wonder wether Laura Moncur was a dane since it was her who said: "I've decided that key to happiness is low expectations." But I think that this is kinda cheating: Why would you settle for this?

After going back and forth with these thoughts I figured that I need to go to very beginning of the history of philosophy in an order to find an original thought about how to reach happiness. After all I believe that all the "big thoughts" have already been thought, now a days we can only repeat them or try to change them and find out that we can not come up with nothing new.

So I went all the way back to 384 - 322 BC to Aristotle. He told me that "Happiness depends on ourselves." This was the key that I had been looking for, the point I had been talking about to people, the core idea that had given me hope. A major break through.

I wanted to find out weather any other people would back up this thought and I oh boy did I find many. For example Abraham Lincoln follows Aristotle by saying: "Most folks are about as happy as they make up their minds to be." Martha Washington, a wife of George Washington thought: "I am still determined to be cheerful and happy, in whatever situation I might be; for I have also learned from experience that the greater part of our happiness or misery depends upon our dispositions, and not upon our circumstances." Things started to sound more promising to me.

Aristotle's thought is exactly what I believe in and what I've noticed to work in my own life. I've surprised many of my friends by asking them "What's been the happiest memory/time in your life and why?" They've all been confused after this but none of them said anything about health in their answers. When I start to think about me, I can honestly say, that I've had tons of happy moments in my life after being diagnosed with scleroderma, even more than I can remember.

US pragmatist philosopher and psychologist William James once said: "Human beings, by changing their inner attitudes of their minds can change the outer aspects of their lives." When you decide that you deserve to be happy, you become happy and you sparkle happiness around you. Happiness is a powerful thing: it can change things for good. Positive way of thinking totally changed my view of life.

Patricia Neal, an american actress got it pretty right: "A strong positive mental attitude will create more miracles than any wonder drug." This is more than true. no drug so far has helped me as much as smiling at life. "When life gives you lemons, make lemonade."

Being positive may sound stupid or faking, something that wouldn't probably suit you. Trust me, I used to feel like this too. But I started this change by relating to what Herm Albright said about happiness: "A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort." I've noticed that this works really well too. ;)

After all, always remember what Roy M. Goodman said: "Remember that happiness is a way of travel - not a destination."

In the end of my research I came to a conclusion that my happiness is as happy happiness as a happiness of a healthy person: I can be happy even thou I am sick. I know that I am happy and I will remain so.

In Health and Happiness - part 2 I will tell you more about Roy M. Goodman's thought: What is the destination then, if not happiness? I do not know when this will happen, but in the near future hopefully!

Stress

2009-07-09T23:31:00.002+03:00

Life's been so hectic lately and it doesn't seem to end too soon. A lot has happened lately and I just wanted to give a quick update on why I haven't been able to update more.

Well first of all, school ended with all of the graduation things going on, entrance exams ahead and preparations for Copenhagen all together with a new summer job. I went through all of it, graduated with good grades, came back from Copenhagen (this all you already know) and got in to three different colleges / universities. That is sick.

After Copenhagen I've been taking care of our association's businesses and I've made a lot of stuff to happen. I'm arranging a sport day for our members here in Lohja, 20-24 sclero patients coming, hopefully. We also had a very sunny and nice week when I just worked and spent time on the beach. This month it's just been raining and I've been working and spending some time with my friends since we're all gonna go to different directions this summer; army, universities, colleges, jobs... Everything's changing and that's causing a lot of stress to me.

I've decided to go to Helsinki University of Technology, but I'll start my studies there in the fall of 2010. Right now I'm trying to find a job and a apartment in my town, since a gotta study few courses of maths before starting my official studies in Helsinki University of Technology. But it's totally awesome that I got accepted there and I'm so happy; I don't have to apply there again next year, so no more stress about that, wow!

My relationship with my boyfriend ended couple of weeks ago. I'm kinda happy that this happened, life's much better now than before, but I'm also so happy for us being friends. So everything's fine in that area, althou this has been stressing me out for few weeks too.

This all isn't too good for my health thou: because of the stress I can not really sleep and I feel hungry all the time. Not good. I haven't been too sick thou but I'm waiting for it to strike me after all the tension is gone. So now I'm just trying to calm down, relax and focus on myself and what I need.

And about that research about happiness I told you about: I'm still on it. You'll get it next time when I'm on a happier mood. :)

I have a dream

2009-07-01T23:46:00.002+03:00

I have a dream. I want to make a photograph book.

My idea is to collect a book of beautiful photos of beautiful people with cosmetic flaws and some quotations of beauty and life. The point is to take photos of people's flaws and to show that even with some flaws, scars or w/e they are beautiful.

The vision is to show the world and everyone suffering with different kind of cosmetic flaws they can not do anything about that they are beautiful. It's not their fault, and it makes life much easier if you're open about it. Like me: about 25% of my skin is affected by scleroderma, and I know it could look ugly to someone. But I don't care. I'm not ugly, scleroderma is.

I know this would take a lot of work. I'd need to take courses of photography and photoshopping, buy a decent camera, find beautiful people with these "flaws" to participate and then get it done. It sounds exhausting and challenging, but I want to do it, no matter what.

This will take some time, I know it. But it doesn't matter how many years it will take, I know that I will get it done some day.

There would be 18-22 different photographs with different quotations, people with different conditions and different stories. The name could be something like:

"Scleroderma

and 19 other strangers/friends/conditions"

If you know anyone who'd be willing to participate somehow, it would be really nice to know! Anyone with any kind of cosmetic difference, on the skin or hands or legs, face, chest.. Anyone with photographing skills, anyone who'd be interested in buying this small book.. Please let me know. I'd love to co-operate.

Oh by the way.. I've been making research about happiness lately and I've found some interesting thoughts along the way. I'd love to share these thoughts with you when I'm not as stressed as I am right now. But I will definitely do it later this week or after weekend!

Love you,

Emmi

EULAR The Annual Congress of Rheumatology 2009 in Copenhagen

2009-06-20T11:25:00.005+03:00

It's been a week since I got back from the congress and this is really my first moment when I have time to write. It's been a stressful and hectic week but now I finally have couple of days off from everything.

What can I say.. The congress was an experience. Even though I'm supposed to be verbally "talented" I can not find the right words to express my feelings. But I know that I absolutely loved it.

I never thought I'd get this great chance to talk about scleroderma, something so close to my heart, in front of so many people. I want to raise the awareness of this disease among normal people, patients, doctors, scientist.. And this is exactly the chance I got.

I've always felt that there is a purpose for everyone. I've stopped seeking for it since I feel that it'll come to me. I think that if you for example love someone and this way have a good influence on someone's life you've already done enough. You can say you've succeeded in life. After Copenhagen I realized that maybe this is how I've loved world: I've shared my experience with scleroderma so that people could relate to it, learn from it, get a new point of view from it... Based on the feedback I got I feel that what was originally meant to be something small just for myself grew up to be a way for people to cope with their diseases or an inspiration for some to get familiar with rare diseases.

I think my text got so "good" or "influential" is because I never tried to write something "bigger than life" for others. I just wrote what I felt. I gave away a piece of me and got back more than I could have ever asked for: I made something happen. I touched something. I haven't yet processed what that something was, but I know it was good.

I am a small person, and I definitely felt like one in Copenhagen. All those big and important doctors and scientists in their suits, talking about important business.. And then me. At times I felt a little lost and confused in the middle of all that but at the same time I had this feeling that I was meant to be there. I understood why exactly after my speech. After talking to those people who were listening to me there, I realized I probably had a bigger effect on other patient's lives than any of those 13 000 big and important rheumatologists with their fancy suitcases.

The other thing what made my congress so perfect (other than the reason why I was there) was people. Sandra, Maarten, Birte, David, Ann, Annelise and everyone... They kind of took me under their wing, guided me through the congress and never realized how huge influence they had on my life in there. I am forever grateful to these people for being there ad for everything they did to me. I sincerely hope that I'll meet all of them in the future again and I wish them all the best health and experiences for their life.

Opening Ceremony went well, my session went perfectly and the city of Copenhagen was really nice, even thou it rained all the time. I took some time off from the Congress with Henri and we explored almost half of the city by buss and feet. Our hotel was perfect, Radisson SAS Royal Hotel Copenhagen *****, no complaints. The arrangements for the congress were made well and I basically had no problems with anything.

The trip was also very hard in a way, physically and mentally. When I got back home last Saturday I couldn't even get myself to shower, I was just too exhausted. I'm not suppose to have too much stress in my life right now, but I have not really slept last week almost at all. I'm tired, I got to bed, roll there for couple of hours without getting any sleep, and then when I finally fall asleep I only have like 4 - 7 hours to sleep before I have to wake up for work. My work usually starts at 10 AM so it's not supposed to be that bad, but I need my 8 - 10 hours sleep in an order to stay healthy. I guess I'm just stressed for some reason. My hair falling off also supports this guess.

But still, it was worth of it. Wonderful congress. Hopefully I'll be back next year.

EULAR 2009: PARE session speech

2009-06-14T21:54:00.004+03:00

What can I say, the trip to Copenhagen was a success. I enjoyed every minute of it. But despite all the great experiences, I am so tired now, that today I won't tell you more about the Congress, but I'll now publish my speech in here for you who are interested to read it.

You can find my speech in here in a PDF form. Hope you enjoy it.

More about the EULAR Annual Congress of Rheumatology 2009 later!

Something huge out of something so small

2009-06-07T14:06:00.003+03:00

After the year 2007 I've seen more docs than ever before. I always thought that docs are the people you can turn to with your problems and someone who seeks an advice to you if they don't know the answer already. But my childish thoughts have changed and I've seen the reality. I've stepped into a system that absolutely sucks.

Scleroderma is a connective tissue disease as well as a rheumatic disease, which means that in my case I have to see at least two kinds of specialists: a rheumatologist and a dermatologist. After the five first visits to doctor here in Lohja I had met four different doctors: a substitute rheumy, old dermo, new dermo and my real rheumy. Every one of them had different visions what to do with me or what not to do.

This lead to a point where I was on three different medications, all of them causing hard side effects which I just couldn't take. The thing is that with scleroderma you never know what might help you and what not. You can try hundreds of different meds, all of them might have helped someone other in the past, but there are no guarantees that even one of them would help you.

When I think about that fall and winter, I can say that those meds changed my life. They had no effect on sclero what so ever, but they totally changed the way I felt. My mind said everything was fine: I had good time with my boyfriend, everything was great with friends and family, I did well in school.. But my feelings said that everything was terribly wrong. I couldn't sleep, I was tired all the time, I felt sad. They caused me anxioty, nausea and stress.

This was about to kill me: I felt like I was being ripped in two. I knew everything was absolutely fantastic but I kept on feeling like it wasn't.

I stopped eating those pills, and never started another course of drugs. That was before my gynecologist wrote a prescription for e-pills.

I felt wonderful with those for a while. There was a balance between my body and my emotions and life was good. But after few months I realized that there had happen more progress with scleroderma (to a wrong direction) than there had been within the last 10 years. I had no idea what it was and I was terrified.

Then our association's chairwoman asked me weather I'm on e-pills or not. She explained that synthetic estrogen is a huge trigger for scleroderma. Suddenly everything was so clear and I stopped those pills as well.

This all had made me think how something that is so small can cause such a huge changes? A small pill consists enormous powers. A small pill can totally change your life, turn it upside down, make you feel good or bad and make huge changes happen inside your body.

I started to wonder who is really in charge of these changes in us. Is it me who goes to the doctor knowing that I might get another prescription? Or is it the doctor who decides what kind of medication you'll get? Or could it be the drug that makes you feel the way you feel? Or after all, is it me who makes the decision to take the drug or not? My answer is that I am.

I'm so lucky for knowing my body so well. I'm so lucky because I realized to stop taking those pills early. There was couple of meds that were hard to quit cause stopping taking them made me feel physically unwell, but I managed to beat that feeling. I've learned that all of the drugs are not good for me. I know what kind of pain killers I can use and what I can't. I'm willing to try different kind of ways to slower sclero's progression, but I'm most willing to quit taking chemical substances if I don't really feel them helpful.

Enough with the pills. There's also something else that was just a small piece of paper but it turned out to be something a lot more. My text, My rare condition. To me it was a way to put all of my thoughts on one paper, but now it's just two more days and then I'll be on my way to Copenhagen. I still can't believe how this small thought of mine got me so far.

I've prepared my lecture already and I must say it's kinda good. My friends and teacher told me it's wonderful, probably just what they were looking for when they invited me to speak in that event. I hope people will like it and I know I'll enjoy my trip to Copenhagen no matter what.

I'm going to publish my speech here on my blog after the congress, I don't want to ruin it with publishing it before hand. I'll definitely update from Copenhagen and I'll upload some pictures too. Till then, bye!

Graduating

2009-06-01T08:07:00.003+03:00

This is me, graduating from Finnish Upper Secondary School, Lohjan Yhteislyseon lukio. Upper secondary is almost like high school, but a little more advanced. The Finnish education system is wonderful and I can't wait to get to university or college. But first I have to beat the entrance exams, so the battle is not over quite yet. I'll totally let you know how everything went.

Lately I've let scleroderma to guide me, what to do in the future and what not. I have to listen to it too since it'll limit my life and chances now and later in life. But no matter what, I'll try my best, maybe even a bit better, and I promise you that I won't let scleroderma stop me. It just might slow me down a lil.

The boy in green is one of my best friends. He's been awesome to me. He's supportive, fun, artistic, inspiring, lovable and kind. Can't tell you how much I love and appreciate him.

The Renee Award

2009-05-31T17:23:00.005+03:00

This got me pretty speechless earlier today and I still don't really know what to say. I'm just going to quote on sweetmango's latest entry:

"This fabulous a

ward highlights wonderful blog writing. The Renee Award is one of the most meaningful awards in blog world because it honors someo

ne who is incredibly inspirational in her intelligent and witty writing. And by doing so, this award celebrates women’s smart, strong and inspirational spirit!"

She passed this wonderful award to me. All I can say is that this made me feel like this blog actually matters to someone. It made me feel like I didn't write this for nothing. There's a meaning for this since there's someone in this world who appreciates this and finds inspiration from it.

There's one person to whom I'd like to pass this as well. A person who's much like me (based on her entries), a person who's writing is full of passion, wondering and joy.

Congratulations Deboshree from Anyone with me? You've been an inspiration to me as the woman who passed this award to me has too. You both are wonderful women, strong and beautiful. Thank you.

Beauty

2009-05-25T15:40:00.008+03:00

It's been a while since my last entry. My aim was to update this at least weekly but for some reason I've felt like I've had nothing special to say. I don't want to make "meaningless" entries with no point so I haven't been that active updating.

Overall everything is pretty fine with me.

I'm graduating with good grades, waiting for our graduation party which takes place this Saturday. I'm starting to panic with my speech for Copenhagen: I only have 5 minutes ready so far, that's at least 10 more to go.. Yikes! But I trust myself and I trust God, so I'm positive that I'll have it ready by the time I've got to show it to my English teacher.

I've had some problems with my esoph

agus and I'm pretty positive I have reflux. The doc said we're gonna check that out, do an endoscopy to rule out all possible sclero-changes on it. If it's sclero I'm screwed since when it hits your internals it doesn't mean anything good. Right now sclero only affects my skin, making it tighter and causing pigmentation changes. I'd like to keep it that way.

Yesterday night I started thinking about "the

cosmetic flaws" scleroderma causes. It definitely changes my appearance on the areas it hits. Luckily in my case I have it on the areas I can cover up with a shirt and long pants if I want to. Normally I don't. I've always been pretty comfortable with the way I am, with or without scleroderma. I can gladly wear bikinis or short skirts.

Couple of years ago someone asked me if I rather had sclero on my face than in my internals. After a lot of thinking I really have to be a little superficial: I'd rather have the systemic form than had my face ruined by sclero. I was so surprised of this answer of mine.. How can I say something like that? What am I thinking? Am I really this superficial or just damn stupid?

After calming myself down I started to think my motives. If I'm naked or wearing jut my underwear, from any angle you can see marks of scleroderma. My face is basically the only thing I have left from "normal" look. I'm not ashamed of sclero, I don't let it bother me but after every option I've considered, this is still my final answer.

Even thou internal involvement can be fatal in sclero, and despite the fact that these pigmentation changes don't bother me emotionally at all, I want to keep my face the way it is. That is because looking healthy makes your life much easier.

I look totally healthy to outsiders and I tend to act that way ninety percentage of my time. If you don't know that there's anything wrong with my health you wouldn't guess. It makes my life so much easier: I don't have to talk about it unless I want to. People treat me the same way they'd treat anyone else. People don't judge me by my appearance.

Anyway, yesterday night I was reading these lyrics for a song (in Finnish) and there was a this one sentence that went something like this: Isn't it enough that many times your emotions will still burst in front of broken beauty? And that made me think. Is being whole more beautiful than being broken?

In this world we live in there's no such thing as whole or perfect. None of us can be neither one of those. Some of us just have scars that are visible, others carry those marks inside of them.

To me, the most beautiful things in life are usually something that has been broken before and has now been fixed. Something that has marks of life, joy, happiness and overcome obstacles, but at the same time still seems whole.

Scleroderma is my scar. It has definitely had a huge impact on my life. It changes me inside and outside, but inside I'm in a piece with it. I've had some rough moments but after being broken for a while I think I'm more able and more whole than ever before.

A wise woman once said that "We're not ugly, scleroderma is." Maybe that ugly scleroderma has made me a more beautiful person than I would be without it.

Exhaustion

2009-05-03T16:09:00.002+03:00

When April turns to May we finns celebrate Vappu. It was Thursday this year, and after thursday comes Friday and Saturday... That means a lot of staying out late, partying, celebrating... That means that Sunday is an Exhaustion Day for Emmi.

When you get sick you loose part of the energy you used to have. I'm glad I'm still able to do most of things people at my age do, I get to live and experience just like any young adult. I've learned to listen to my body, it usually tells me when I've had enough. But balancing between when I should stop and relax and when to keep on going is sometimes really hard.

This Vappu made me think about living fast. Fast life; I live. Is it really so? If I live fast, does it get me any further? If you run there and back, do this and that, what do you get out of it?

It is true that you might experience more. But living with scleroderma has made me realize how important it is to lay back and think what kind of experiences you want to experience.

When you don't anymore have the energy to do everything you want you have to choose. Make decisions between wether you want to go to this party or that gathering. If you go to work you won't have the energy to go jogging afterwards. That's the life of a sick person: making decision the healthy doesn't need to think about.

The healthy takes time for themselves when they feel like it. I have to do it more often, even thou I wouldn't want to. But my body tells me to stop. Don't do this to yourself, it says. Lay down, stay still, breath deep. You don't want to get more sick, do you?

Then you just have to give up. You got to think again what's more important in life: living too fast and experiencing a lot or the health that still remains.

I should have stopped already after Thursday and stay home at Friday night instead of going out. The whole beginning of the week is going to be hard for me now. It feels like I used all my energy for today and tomorrow on friday, and now I'm sick and tired.

That is the thing that I still need to work on: calming down. For an active teenager the hardest thing to deal with with scleroderma has been relaxing. I don't want to stop, I want to go and live. But I have to love myself more and drop it at times. That is my big challenge, but I'm positive about learning it. At least I'm going to try my best.

PARE Session Speaker

2009-04-25T12:12:00.007+03:00

When I wrote my entry for the competition I never knew it was going to get this big. I never thought I had any chances of winning the finnish competition. Talking about the whole european contest was a joke to me. Now that I actually won and I'm going to Copenhagen I have realized how big the whole congress-thing is. It's scary and I already stress about clothing and what I will do there and how many people there will be and hoping that I won't have to do anything special, just show up and leave. But no, this is getting even bigger.

I received an email from EULAR executive secretariat. I need to quote on it so you'll get the point: "We would like to officially invite you as PARE Session Speaker to the congress. On the basis of your expertise and international recognition we should be grateful if you would give a lecture on the following subject: Winner of the Stene Prize: My rare condition."

What expertise? I am no expert in any area of life and I know no more about scleroderma than any other sclero patient. Sometimes I feel like I'm not an expert even in my own life.

I'm supposed to give lecture of 20 minutes about my winning essay. 20 minutes in English in front of adults? There can not be any more challenging situation for me than this one would be.

"The Scientific Programme Committee of EULAR is dedicated to presenting an outstanding programme to delegates in Copenhagen – we believe that your involvement will contribute significantly to this goal."

After thinking about this and panicking for a while I realized that isn't this just what I want: a great opportunity to talk about scleroderma, tell people about it and about my case, raise awareness of this rare disease.

I know my awesome friends will be there for me, helping with what I'll say and giving advice, supporting me. After their encouragement and reaction to this I just can not say no. This is a huge honor and I'm grateful for it. If it really is me who they want, then why not. I'll do it.

Finnish Scleroderma Association Cruise 2009

2009-04-19T13:57:00.003+03:00

Since last fall I've been the secretary of Finnish Scleroderma Association. At times it feels like it's a lot of work with school, hobbies and a job but there are moments when I remember why I do this. Yesterday there was one again.

We arranged a cruise for our members which took place last friday. There were around 20 sclero patients with their husbands and kids. Me and my boyfriend attended too. In the evening we dined and wined, listened to some finnish rock band and just had a nice time. It's just a lil hard for me to feel like I "belong" to that group of people, since sclero normally hits women around 40 years old. Adults usually get the systemic form which is worse than localized form, so I also feel like I'm not sick enough for being in that kind of company. On the whole cruise, I was the only sclero patient less than 30 years old.

I was surprised how well they all took me in and how interested they were in hearing about my case. I've never been taken as seriously by adults as I was on Saturday when we had our spring meeting. As I secretary I spoke about the situation of our association, threw some ideas of mine and wow... they all listened. They even nodded like they got what I just said and even approved! It felt like I've accomplished something, like I've given to other sclero patients something that helps them to live with their diseases. That was the moment that reminded me of why I use so much of my time of doing stuff for that association.

Maybe this is a sclero thing.. I've actually heard it before but I've never really understood it: I've gained a lot of maturity because of all this. When I speak about sclero I feel a lil like a different person. I use that maturity also in other walks of life too but with sclero it's more visible I think.

That's why I'm glad I got this condition when I was only six years old. I've grown with this so I've had time to think about it and find my way to cope with it. I've adjusted to life with scleroderma since I was a kid. I guess that's much easier than if it had hit me out of the blue after living normal and healthy life for many many years. I'm sure that without scleroderma I would be totally different person and my life would be so different in every way.

My Rare Condition

2009-04-15T20:26:00.000+03:00

The pianist takes the first bars on the record. The soft voice of the teacher in the background. I turn to the railing. I let my hands breathe in the opening, then land them delicatelyon the railing.

The first position, demi plié...

... and relevé, demi-pointe...

I loosen up, the body knows what it's doing.

Thoughts are wandering someplace else.

Bend your right arm over the head...

... same with the left..

Suddenly skin refuses to give in and movement stops for a fraction of a second, as if this local tension came as a surprise. I feel how the bulges of ribs become visible when the skin tightens around them. My left side can barely do half of what the right one just did.

The third position, demi plié...

The skin on my ankle does not give in either. It has tightened even more since last week. In the mirror, I can see everyone else doing the movement with the greatest of ease while I sink into desperation for a moment. It's not the potential I lack. As I lose more and more of my ability to move, I wonder what I am even doing here. I'll never become a ballerina.

I'm supposed to have an appointment with the specialist, big decisions ahead. To try out new medication or not? To let the tensioning of the skin limit my everyday life or to face the heavy side-effects of another course of drugs? Can the psyche of a small person handle the psychological consequences of the disease progressing without even trying to stop it?

I can't help but feel a little jealous. How many teenagers need to concentrate on something like this during a ballet class? At times it feels like the sickness doesn't leave room for any other thoughts, as if there weren't a single moment for me to breathe freely, as if I always had to strategize my life like a war. The doors are open for the healthy, scleroderma closes mine.

And the leg slides to the floor...

Left shinbone nastily knocks onto the hard floor, the already bruised knee will be bruised again tomorrow. Moments like these you understand the importance of fatty tissue. Such self-evidence, many of us have too much of it. I, for one, have none.

They say that a sick person usually feels loss when the illness takes away something important, like health, from them. It also makes them lose many other things from their everyday life. Some are little, some are big and important. Not only do I lose my fatty tissue, but with it go my looks, my energy, those innumerable opportunities I used to have…

... port de bras away from the supporting leg...

A large movement with the arms,

back leaning slightly to the back...

The vertebras of the spine crack as the back bends and the shoulder blades shiver in pain. The thought of loss still bothers my mind. Haven't I also received something good out of this? I wonder how much specific knowledge and maturity this condition has brought to my life. Understanding, prioritizing and proportioning. The darkest clouds make us find the brightest silver linings, and those linings are what make a person smile. How many smiles would I have missed without all of this?

Neither the amount of patience nor the support and caring my close ones have shown me can be measured by any known indicator.

Rise up again,

hands back on the railing.

The open window brings a fresh autumn-breeze into the room. Breathing it feels wonderful, but at the same time I feel my fingers slowly turning pale while the coldness sneaks into them. Veins contract, blood doesn't flow. Bit by bit a pinching ache has reached every finger.

Maybe that’s what positive thinking is all about, trying not to think only about the loss? In the end, what we have here is only for rent. None of us leaves this world in our body, no matter how health or sick you've been. If nothing is truly ours, do we deserve anything more than we get?

Tendu to the right...

...passé par terre...

I sigh silently when I feel the sharp pain in my soles. Only yesterday I thought I could ask the teacher to help me to buy ballet shoes. Maybe I could feel like a ballerina for a moment, before scleroderma ruins my chances to do it. But what would I say to the teacher, how would I back this thought up? How to explain to an outsider in a short time everything that scleroderma involves so comprehensively that she would understand, when I haven't been able to explain it all even to myself?

Back to the first position,

lower your hands,

and the music ends.

I look in the mirror. My natural will to live beats the desperation, concentration returns to the room. I see a good posture, a smiling face. I see a person who despite the hardships enjoys her life to the fullest.

That moment I make the decision never to let scleroderma keep me from dancing. I decide to focus on the doors that are still open to me, not to the ones that have been shut already. There's potential in me to do almost anything and I won't give up any chance to use that potential.

Edgar Stene Competition 2009

2009-04-15T20:02:00.004+03:00

I was supposed to write about how did this all sclero-thing happen to me and how did I do with this when I was a lil' kid. I'm going to make an exception this time since I think what's about to come is going to be more interesting.

At the end of the last year I wrote an entry for a Edgar Stene competition, which is arranged every year by European League Against Rheumatism. The topic was My Rare Condition and I thought that since sclero is really rare I might write something about it. My intention was to write only for myself but after my friends read the entry they almost forced me to enter the competition. After couple of months when I had totally forgotten all about this a woman from Finnish Rheumatism Association called me and told me that I had won the finnish competition.

I still didn't really take the competition seriously as I thought that my text was probably the only one or the quality of the entries was really bad. I translated my text into English and it was sent to EULAR for the final competition, where the winners from 16 European countries competed against each other.

Today I heard that I've won the whole thing: they chose my entry over any other in the whole Europe. Whatttt?!

I'll receive an award of 2 000 euros in Copenhagen in June. They'll pay my hotel accommodation for four nights, the plane tickets included. Even though I didn't take this too seriously in the beginning I have to say that this is bigger than I thought.

In the email I received from EULAR the wrote how the quality of the entries was really high and how choosing a winner was though job. But in the end they had chosen my entry unanimously. It actually makes me feel pretty good and I'm totally looking forward to the Copenhagen trip!

So, to celebrate all this, I thought I'd publish my entry in my blog. I'll make a new entry for it, but here's a link in case you missed it: My Rare Condition. I hope you'll find it interesting.

Who am I?

2009-04-10T23:25:00.004+03:00

I'm a young girl from Finland, just finished my upper secondary school studies and I'm now applying for universities. I've had juvenile linearic scleroderma since 1996. Scleroderma is a huge part of my life, but it's not something I usually vent about. It's rather something that has made me grow as a person, something that makes different kind of thoughts arise from my mind and sometimes I have a terrible urge to write them down. Since I like blogging my friend told me to start a blog about living with sclero, and since it's a subject I could write a whole novel about, I thought I'd give it a try. I'd also like to change thoughts, so any kind of comments are appreciated.

I'm sorry about the fact that my english ain't perfect, but I hope I'll get my point through.

Next time I'll tell you how all this sclerostuff started and what is the disease doing to me. But at first, I thought I could introduce myself a lil bit. What really makes me me?

Dance

Dancing is my passion.

After some coincidences I ended up teaching aerobics for teenagers in Lohjan Naisvoimistelijat ry. I've continued taking dance classes and courses and currently I'm teaching one dance group in LNV, a group that has the most wonderful team spirit ever. Nowadays I'm also taking ballet lessons, but I did street dance for couple of years too. On top of the dance lessons, I love to go to clubs just to dance and dance till the club closes. Dancing is my way to forget every kind of troubles, problems and sorrows, it's my way to forget I'm not as healthy as everyone else is. So every time I feel strong enough, I just dance.

Friends and family

No-one gets to choose their relatives, but you can choose your friends. I like my family, I appreciate everything they've thought and given me. We don't really get along too well with my mom: at the same time we're too similar but too different. I have also a dad and two younger sisters, with whom I get along better.

I have about three of four greatest friends ever. Friends are there when you need them, and friends are there when you don't. I have a lot of acquaintances, school mates and people who I hang out with after school.

I'm together with this wonderful boy from my town. Everything has gone beautifully so far, there's absolutely nothing to complain about. Hopefully this will last for a long time.

Future and hopes

I describe myself as an optimistic realist. I've grown to understand realistic possibilities and choices but I tend to think almost everything in a positive way. I feel that hope and life are symbiotic: without one, the other can not exist.

At the moment I'm applying to universities, and hopefully I'll find myself in there next fall. I'm into physics and biology, even though I feel physics really challenging.

I'm going to keep on dancing as long as I can, exercising and taking the most out of life. I want to experience and have fun. I want to see the world, travel, meet new cultures and persons.

I want to have a stable relationship, someone to share my dreams, hopes, expectations and fears with. Someone who shares his visions with me too.

I want to put my faith in God and trust Him having a great plan for me.

I'd like to stay at least as healthy as I am now. But that's not really under my control.

What is scleroderma?

2009-04-10T22:40:00.002+03:00

Scleroderma is a rare, chronic autoimmune disease. It's both rheumatic and connective tissue disease.

The skin thickens and tightens, becoming deformed and unyielding. Then, the skin around the body's joints allows less and less bending. Hands, elbows and knees all become stiff.

There are two main types of scleroderma: localized and systemic. The systemic forms can affect any part of the body (skin, blood vessels, internal organs). The localized forms affect only skin and sometimes the underlying tissues, but do not affect the internal organs, or reduce one's life expectancy in any way.