Finnish CFS/ME patients Calling For Help

I'm calling for international help for Finnish CFS/ME patients. 

Finnish authorities have started a chase of CFS/ME patients and doctors, and left thousands of patients without help. Before CFS/ME, this hunt was for hypotyreosis; several doctors have been silenced, and patients left without help.

Finland has no official consensus of the treatment of CFS/ME - as this illness is not accepted as an illness in Finland at all. 

Now we need your help. We need official and unofficial statements of international/national CFS/ME or other patient/medical organisations etc. Especially needing a connection to EMEA and CDC.

Why am I asking this for you, personally? Because I have been shouted at, threatened and neglected by Finnish public healthcare for years because, and this is a direct quote "it's your own fault, you have too rare illnesses". I turned to the one doctor in Finland understanding my rare illnesses, and I got help. I mean HELP. Actual, real, efficient, medical help. For 4 years. Until last week, when officials decided that's it. No more treatments, as, a direct quote "these treatments could possibly be harmful", without never seeing one patient or consulting this doctor. 

Because of my complicated rare illnesses, my body does not tolerate the vital medical care it needs for myasthenia gravis (for which, thank God, I get help from public health care), without this medical treatment I had. Without it, my body functions stop working. I have about 2 weeks worth of medicine left, and not one single doctor in Finland dares to write a prescription now, as they are afraid of this hunt. Officials agree, I need my treatment, but nobody takes responsibility. They are afraid of something.

We need international help now, trying to convince Finnish authorities that CFS/ME is a real illness, needing medical care (other than CBT or GET) and justice. And above all, this one doctor needs his rights back, he's internationally distinguished M.D., professor, and researcher, and has dedicated his life for helping CFS/ME patients. 

If you have any ideas how to get a connection to your country's patient associations or EMEA or CDC, please send me a DM in Instagram (harvinaisenkauniselama), or comment below. Thank you!

Nothing Is Over

For all my friends, here and there, across the world. Thank you. Thank you for your offers for help, for your encouraging words, your friendship, and concern. 

I know it's sounds a bit funny, but you know what is the strongest feeling right now? Disappointment. I have told thousands of you, my friends, how much I love my country, how grateful and proud I am to be a Finn. How privileged we are, to be born in Finland. And especially, how well we are treated in our public healthcare. And suddenly... I would still want to be proud to be a Finn. I love my country, I love the nature, I love the honesty, the incorruptible integrity. But it hurts to notice how this bureaucratic system can swallow thousands of patients, and nobody cares. No, that's not true (maybe it is), but what I mean is, nobody takes responsibility of the decisions Finnish bureaucratic system is so capable of spit out every few seconds.

 

I'll tell you shortly what's happening here in Finland now. The M.D. taking care of me and hundreds of other patients has been told by officials now that he cannot have a private clinic anymore. Because it might be harmful. I mean. Seriously? Not one single facts are given to proof that argument. Not one. Not a single one. It just might possibly be harmful. End of story. So, let's restrict the rights and punish also couple of thousand patients on the way. No biggie.

You might or might not have heard about chronic fatigue syndrome (CFS/ME) at some point in your life. It's a highly-disputed illness, some think it's completely fake, some that it's a real thing. You know, most illnesses were considered as rubbish at some point, and only after there has been a way to measure or proof it exists, it exists in the minds of doctors - even if the patients are aware of the fact way, way earlier.

This is now the case with CFS. I have several other rare illnesses too, that doctors accept, and they believe that I am truly and honestly disabled and chronically ill, and I have medical care for these illnesses. However, with the CFS... Well. Here in Finland we are fallen badly behind in the medical development and knowledge, and doctors tend to think CFS means that you are nuts, faking, and lazy. There are no official treatments, no coherent agreement, nothing. We have one doctor trying to fight for us, who has over the years seen many patients and trying to help, participating to the international research about the treatment of CFS. He has used medication and medical treatments that are widely used internationally, harmless, with no proved or shown side effects for patients. The problem now here in Finland seem to be, that international research is not considered to be trustworthy here. So we have quite a problem, a vicious circle, as there are patients having real symptoms, and doctors not believing them because the symptoms cannot be proved with the current measurements - as the specific tests are only now being found in international research - and there is no official coherent consensus how to treat patients either.

So, while this doctor was abroad last week, in the EU conference (as the official, selected representative of Finland) trying to find consensus with the doctors all over Europe, about the coherent medical care for CFS patients in the European Union, our lovely officials decide that wow, by the way, we don't like this. And announce that they take his rights to have a private reception away. They don't care that patients are left without help, just like that. Most of them won't get any help from public healthcare, as they are, after all, only pretending to be sick, or, as the officials say: "in need on psychiatric treatments". Oh, how wonderful, thank you.

The problem is, some of us patients have a medication that literally keeps us living. Including me. I have, with the help of this one M.D., a medication that ensures my body to accept the vital myasthenia gravis medicine without which I'd have a myasthenical crisis in half an hour. Without this extra medicine, I'll have a colinergic crisis in half an hour too. With both medicines balancing my body, I'm just fine. So, I have a real crisis now. I have contacted all the bureaucrats imaginable, and then some more, just to be sure, and all of them agree on one thing. I cannot be punished like this, I'm just a patient, and public healthcare system should take now full responsibility of my care. And guess what happened? Public healthcare proudly presents: they cannot help me, as the treatment is experimental and not medically justified - without actually not even trying to find out, what might be the justification or medical reasoning behind it.

So, I am, now in square A again. Let's do this all over again, from the beginning. As I am not giving up. I won't lose hope. I want still to be proud if this country, not having to look for help from abroad. I want to still believe in justice, in kindness, in life. What I want is my life, that is now in danger because of some petty, small minded officials, because of money and because of jealousy. I want to live. I'm not that old you know, thirtysomething. I just won't accept I'd either die or continue my life in hospital tubes. 

When I was crying for the first time because of this (after some more really, really bad news, as I just have not the energy to tell you the whole dirty story), this one started to play on my Spotify... So, even if I've quoted it before, I'll do it again. The Sunrise Avenue, and Nothing Is Over. I want to believe that there's still time, that I'm not broken, that I'm brave. That nothing is over.

"Nothing Is Over"

Don’t turn away
There’s still time
A tiny moment
Don’t let go today
We can still shine
We are not broken
Scares to see that we are
A step a way
The one to take us
one way wrong way

Say nothing is over
Though everything’s crazy
Be brave and trust me
It’s not a game over
We gotta try harder
You gotta stay with me
There’s nothing we can’t reach
Cause nothing is over

I won’t turn away
Cause I can’t hide
The pain would find me
Don’t send me away
I’m on your side
That’s where I want to be
It seems to me that we are
Just like the rest
We could use a word of guidance
I hate to see that we are
One step away
The one to take us
One way wrong way

Say nothing is over
Though everything’s crazy
Be brave and trust me
It’s not a game over
We gotta try harder
You gotta stay with me
There’s nothing we can’t reach
Cause nothing is over

Say nothing is over
Though everything’s crazy
Be brave and trust me
It’s not a game over
We gotta try harder
You gotta stay with me
There’s nothing we can’t reach
Cause nothing is over

Nothing is over

My Finland part 1

(Sorry for the techical problems, I couldn't solve them at the moment...)

I have to confess that I have grown up in a completely musical snob family.  And I say that with all my love, and I'm one too, obviously. Growing up listening to Wagner, Tchaikovsky, Sibelius, Brahms, Beethoven, and you know the rest, and knowing arias of The Magic Flute by heart at the age of five, playing the violin for over two decades, and having a home filled with musical instruments, it was quite a rare thing to hear pop music, or what's it even called? (Leonard Cohen being the only musical exception in our family.) We never ever listened to radio, so I have no idea who's who and what's what in the world of non-classical music. (But I can say if the cellist plays the Davidoff or if the violin is a Stradivarius or Guarnerius.) 

I have only very, very recently got used to listen to music without getting literally sick if the singer doesn't sing absolutely in tune. Or without the feeling my throat hurts when I hear a singer not knowing his/her technique. I have seriously tried to educate myself to listen to Finnish music, but it's a slow process. It's almost every day that I hear something new. I know now that there is a band called The Sunrise Avenue, and I really love their lyrics, and thanks to the vocalist, it does not even hurt my ears to listen to them, they stay quite nicely in tune. (Not probably the nicest compliment you would think, but for a person having an absolute pitch, this makes sense.) I need lyrics to mean something. I don't like the usual moaning about crumbled love life, the lyrics has to have depths like life itself. And you know what. I have found more Finnish songs like that than English ones. It's a pity not so many people on Earth understand them. My researcher side still thrives inside me, and I like to think it's something to do being a Finn that makes our songs so meaningful. 

We Finns do not speak much. We are rather good listeners, though. It's considered as lack of manners or very rude to interrupt another person speaking. And because we don't do small talk (you just have to see the Finnish F1 drivers once and you know what I mean), it's a good idea to listen, because if we speak, it's all hard-core stuff. After spending three decades listening to Italian arias about absurd love, I'm stuck with the feeling of relief, finally finding Music That Matters. Even though it's not Very Sophisticated. (I have gone through that same phase with literature too, after Dickens, Tolstoy, Dostoyevsky, and so on, I have intentionally learnt to read whatever I feel like, not what Is Supposed To Read.) I think I might shower you with Finnish lyrics, I have hundreds in my mind already, that have a wonderful message.

Yesterday I heard one song for the first time in my life. (That still happens every day, new songs, being a newbie in this world of non-classical music.) Immediately I wanted to share it with you. It's about Finland, about being a Finn. It wraps it up in an impressive way. Of course, Jean Sibelius does it the best, and if you really would like to know what a Finnish heart sounds like, you might want to listen Finlandia, Op. 25 . (And being a snob, I really recommend not listening to whatever record of this, but the one I link, since it really matters if the orchestra and conductor are Finnish, others just cannot get it right. Just listen to this, you don't have to watch the video itself, but let the music flows into your heart and stay there forever. 8:42 minutes isn't that long time in your life. You can do it. After listening to this particular version, you're free to find whatever version you like in Spotify, but this one is an ultimate version, I listened hundreds of them for you.) This one is English version of the hymn part only, and it's just perfect, perfect, perfect: Finlandia Hymn and it speaks for itself. (And if you feel like wow, that's cool, just wait for this: Violin Concerto in D minor, Op. 47 violinist, naturally, Pekka Kuusisto!) Now, to that song I heard yesterday. After these Sibelius, you will find actually, that it's quite the same, essentially Finnish, dark, bittersweet, wistful, serious, and oh, so well describes how much we love our country.

A very Finnish Lauri Tähkä

here: Minun Suomeni (My Finland)

My Finland

My Finland is

A sentence not stated

It's the trees in the forests

It's the moon in the sky

Over the snow

My Finland is

A boy not baptized

You can't get the paganism out of the boy

Just by giving a name

When I think about it

I understand it

I'm too Finnish

My Finland

Is under the starry sky

My Finland is entirely open

And I found it out when I was roaming

All over the world

My Finland is

The most beautiful in the world

I bet it might fade away

Somewhere else

Under some other sky

Why does the longing hit

To the chest when the summer night

Opens in front of me

It goes off somehow

Just by sitting there

When I think about it

I understand it

I'm too Finnish

My Finland

Is under the starry sky

My Finland is entirely open

And I found it out when I was roaming

All over the world

My Finland is

The most beautiful in the world

And when I'm wading through my small life here

It's wild, surging in my veins

My Finland is my heart

My Finland is my head

My Finland is the sky, it's the land

My Finland

Is under the starry sky

My Finland is entirely open

And I found it out when I was roaming

All over the world

My Finland is

The most beautiful in the world

The most beautiful in the world

and in Finnish:

Minun Suomeni

Minun Suomeni on

Lause lausumaton

Se on metsässä puut

Taivaalla kuu

Yllä hankien

 Minun Suomeni on

Poika kastamaton

Ei poijjaasta saa pois pakanaa

Vain antamalla nimen

Sitä kun aattelen

Minä ymmärrän sen

Olen liiankin suomalainen

Minun Suomeni

On tähtitaivaan alla

Minun Suomeni

On auki kokonaan

Ja sen löysin kun mä kuljeskelin

Tuolla maailmalla

Minun Suomeni on

Kaunein päällä maan

Kai se haihtua pois

Jossain muualla vois

Jonkun toiseen taivaan alla

Miksi kaipaus lyö

Rintaan kun kesäyö

Eteeni aukeaa

Jotekin laukeaa

Vain siinä istumalla

Sitä kun aattelee

Minä ymmärrän sen

Olen liiankin suomalainen

Minun Suomeni

On tähtitaivaan alla

Minun Suomeni

On auki kokonaan

Ja sen löysin kun mä kuljeskelin

Tuolla maailmalla

Minun Suomeni on

Kaunein päällä maan

Ja kun täällä kahlaan pientä elämääni

Se on suonissani villi kuohuva

Minun Suomeni on sydämeni

Minun Suomeni on pääni

Minun Suomeni on taivas, se on maa

Minun Suomeni

On tähtitaivaan alla

Minun Suomeni

On auki kokonaan

Ja sen löysin kun mä kuljeskelin

Tuolla maailmalla

Minun Suomeni on

Kaunein päällä maan

Kaunein päällä maan

To be continued..

Spoons

And suddenly, it smells like summer, like sunshine, like happiness.

Two weeks ago, we had snow. Yes. Snow. And no. We don't have normally snow in May. We live in Finland, but actually, this is not the North Pole. (I heard once some people think there are polar bears in Helsinki, and it's quite dangerous to walk there... Well, I lived there for over a decade and did not see any, but - you never know.) 

While we were happily beachcombing in Devon, spring did it's magic here, and now it's all green. I love the bright, happy spring greens of birches, with their silvery white trunks, the bird concerts we hear all day long, the smell of fresh grass. I enjoy looking how our chickens happily peck on. Autumn is my favourite time of year, but spring has a lovely promise in it.

Now, those following me on Instagram, do know we were in the southwest of UK couple of weeks. I feel better there than anywhere else in this world. The seaside really suits me. This time I was really sick, though, having extremely high fever, and it will take some time to get over with it all. But I don't mind. I saw lighthouses, I sat hours in Slapton Sands beach, looking at the waves and cried about the cruelty of human kind. (And kindness, too.) If Slapton Sands and Operation Tiger does not ring any bells, you might like to google it a bit - or maybe not, just WWII things. I have always been a bit of a history geek, and political history was once a thing I knew a lot about, but my brain injury and memory loss took that away too. We collected memories, we collected sea glass, driftwood, fossils...

Normally, after a holiday, people unpack, yawn a bit, maybe take a nap and drink a bit more coffee than usual, load their holiday pictures for the world to see, and that's it. For a chronically ill person, it's a bit different. It takes months to recover, literally. We have been a week home now, and I have been in bed the whole time, and cannot see it changing for a while. It might actually not occur to normal persons, how easy their lives are, because they never have to stop to think about it. They just do, live, and be, end of story. So, I decided to once again tell you about the Spoon Theory, original one here. 

People like me, with rare, chronic illnesses have a very limited amount of energy to use every day. We cannot just overdo, decide that now I will do this and then rest. No, that's for normal people. For us "spoonies" every day means making hard decisions. Everything we do affects to our energy amount. And with everything, I mean, everything. You know the moment in the morning, when you open wake up and open your eyes? You stand up, go to bathroom, maybe take a shower... Oh, wait, hold on! Opening your eyes, it's a huge effort number one. And now we take out the spoons.

Spoonies (chronically ill persons) count their energy in spoons. You have a very limited number of spoons to use every day. All the things you do in a day, means that you use one spoon. And, let's say there are about 15 spoons to use (I feel very generous now, for your sake, because you might not be able to get over the fact that I, for example, have like 5 spoons a day). So, back to the waking up.

Opening your eyes, one spoon. Standing up, one spoon (two in my case). Going to the bathroom, third one. And you didn't even get dressed yet, or brush your teeth, did your make up, or hair... By the way, shower takes at least 3 spoons. So, beginning to get the idea? You have dressed up and used at least 7 of your 15 daily spoons. Oops. Breakfast, then to work, and it's pretty much it. How will you be able to get back to work, without no spoons? Cleaning up the house, cooking, washing? How about hobbies, seeing friends? No chance, whatsoever.

Now, you may start to see my point. Going to a holiday means I must think a whole year ahead how to use my energy/spoons every single day to be able to survive. (With surviving, I mean in my case that I'll be able to breathe the whole time, not getting unconscious in an airport and scaring the hell out of the personnel and not getting to the flight, and luckily be able to speak and walk too.) And afterwards, months of silent days in bed. But it is so worth it. I don't mind seeing friends, shopping, anything, if I am in a good condition enough for a bit of reading, listening to my children, looking out of the window, maybe writing a letter sentence by sentence... 

My point of telling this is not to make you feel sorry or pity for me, I just wanted to tell you some facts about what it is like to live like a spoonie. I consider myself like a winner and champion, I made it! I was on holiday with my family!

Something completely different. It is lovely how, at times we need it, we stumble upon things we need the most. For me, it has been many things. One is Jenny Colgan's books. They have brought me so much joy over the years, her light, happy, reassuring way of telling how one thing ending might not nessessarily mean the whole life is ending. Her books have carried me over some quite dark times, like Leonard Cohen's poems. I have found new music at times, describing just perfectly my feelings. Now, I must admit, I "found" a Finnish band I had never heard before, even though I learnt it is quite popular in Europe. But hey, I am more like a Cecilia Bartoli - Maxim Vengerov - Jacqueline du Pré -kind of girl. Being in bed all day is sometimes a bit, well, boring, so listening to music (when there is spoons for that!!) is a bless. I love to listen to the lyrics, and I only listen to music that have something to say. (Recommendations are always warmly welcomed.) 

This band is called Sunrise Avenue, and although it's a bit far away from my usual opera-arie antique stuff, I love the lyrics. (They sing in English.)  How could I not, when they sing, "hey little fighter, soon it will be brighter". 

Now, I'll show you two example, why I love them. If you have followed me a while, you know immediately, and if not, I'll tell you very shortly: I have been through some quite hard times accepting some parts of my life, like being not able to do my beloved PhD, instead learning how to use electric wheelchair, and it's been a bit rough sometimes. These two lyrics are pure gold to me.

"Nothing Is Over"
 (listen here):

 

Don’t turn away
There’s still time
A tiny moment
Don’t let go today
We can still shine
We are not broken
Scares to see that we are
A step a way
The one to take us
one way wrong way
Say nothing is over
Though everything’s crazy
Be brave and trust me
It’s not a game over
We gotta try harder
You gotta stay with me
There’s nothing we can’t reach
Cause nothing is over
I won’t turn away
Cause I can’t hide
The pain would find me
Don’t send me away
I’m on your side
That’s where I want to be
It seems to me that we are
Just like the rest
We could use a word of guidance
I hate to see that we are
One step away
The one to take us
One way wrong way
Say nothing is over
Though everything’s crazy
Be brave and trust me
It’s not a game over
We gotta try harder
You gotta stay with me
There’s nothing we can’t reach
Cause nothing is over
Say nothing is over
Though everything’s crazy
Be brave and trust me
It’s not a game over
We gotta try harder
You gotta stay with me
There’s nothing we can’t reach
Cause nothing is over
Nothing is over

"You Can Never Be Ready"
(listen here:)

Sometimes
Our hearts get broken
But keep them open
Cause when it comes
You can never be ready

Let it all out
And dive
Deep in
Don’t worry
Go all the way
No fear
Don’t hide
It’s over

You must feel lost
And kind of scared
To let go
Bring all your scars
And jump right in
Here we go

Sometimes
Our hearts get broken
But keep them open
Cause when it comes
You can never be ready
Hold on
You can’t let go now
This is your time
Hold the line
You can never be ready

I’ve been there too
You know
It made
Me hurt
I thought I would die
But hey
Still here
Still breathing

I fell so hard
It messed me up
To the bone
But I’m not scared
No I want more
Here we go

Sometimes
Our hearts get broken
But keep them open
Cause when it comes
You can never be ready
Hold on
You can’t let go now
This is your time
Hold the line
You can never be ready
You can never be ready
You can never be ready
You can never be ready

Sometimes
Our hearts get broken
But keep them open
Here we go

Sometimes
Our hearts get broken
But keep them open
Cause when it comes
You can never be ready
Hold on
You can’t let go now
This is your time
Hold the line
You can never be ready

P.S. Their most listened song is Hollywood Hills, here.

What Matters Most

Thank you for asking how I do, you dear soul. Yes, you. 

I was thinking not one soul reads my blog, and did not bother to write, but there you go. You should never assume anything. Now, where to begin. Winter has definitely became spring. Today sun is shining and my daughter brought me the first flowers of this spring. Tiny, crushed, precious coltsfoot. Always the promise that soon, soon the nature will wake up and there will be so much to admire. But meanwhile the modest yet so gorgeous little sunshine of a flower can have all of our attention and admiration.

There has been highs and lows, its called life. I had some serious thinking too, about social media and being part of it. It seems that what ever one does, someone will always try to crush, hurt, and destroy. I have had my share, in plenty. However, I decided that - as one kind official pointed out while we were sorting some mess other people had kindly arranged for me - those persons must have "life as ugly as hell", and as a theologian I had a very good laugh and had to agree. I decided to concentrate on kindness, beauty, and dignity and let those people have their ugly life all theirs. Life is too precious to spent in bitterness, and I have absolutely no intention to waste my tiny energy amount for anything negative. (Nice example. I had to think for good five minutes what is the word for bitterness. Both in English and in Finnish, I could not get crasp of the feeling and the word.) There are so many things that matter more for me, for which I want to spare my energy.

I have not still managed to find my Finnish. It seems to have gone forever. Doctors and speech therapists have had some interesting moments trying to figure it out. I miss it. Being able to express myself fluently on my own language. I was so very talented and good at it, and it was the one thing that I could still do - write - even though I could not work anymore, or do much else. Now my communication in Finnish is limited to short text messages that takes ages to write and looks like the writer must be five years old, max. But there seems always be something there, waiting for the perfect timing to arrive in to ones life. This time it was journaling and snailmailing.

Did I tell you that in autumn my neurologist told me to start keeping diary and to carry a calendar with me always? That I would need them to practise my memory, or the lack of it. Being a researcher seems to be essential nature of mine even though my brain is supposed to be retired, so I dived deep in the world of journals, diaries, planners, notebooks, and calendars. And was extremely delighted to notice that OMP (my four years old misheard the OMG once, and the saying stuck) I can combine them: a calendar and a diary in one, and also, I could do it myself.

I ordered Midori Traveler's Notebook, passport size wonder of a notebook. It was love at first sight like none before it (except, of course, nothing can ever compete with me seeing the very first time my own custom made violin by the best violinmaker ever, but that was couple of lifetimes ago) and I begun my journey in the new world of journaling. Oh, how I have had beautiful moments with beautiful souls in Instagram, sharing our passion. 

Soon I noticed that there seems to be some kind of connection between the people keeping journals and the exquisite photos of beautifully decorated envelopes, and... Well... Here I was again, like a three years old in a candy store. I just could not help it. Being creative, seeking for the little things in life and enjoying them, and sharing them with others. How come I had not found the world of snailmailing before? I am absolutely certain there is one good reason for it. Loosing my mother tongue and being able to communicate only in English, there is enough reason for many good things to enter my life, don't you think? (For some reason I can't change the color of the text here, sorry it's blue!)

They are very convenient hobbies for me, journaling and snailmailing. Journaling ensures me to memorize things, if only the little ones (that matter the most, in the end) so it is practically a medical treatment for a person like me, isn't it? Snailmailing, on the other hand, for me is a perfect way of being social. I can limit it in doses, have a rest, and then continue chatting with friends, and there is quite a limited amount of noise too, or movement, that fatiques me so quickly if seeing people. 

I happened to stumble upon beautiful lyrics I want to share with you. It's about love, but for me, it's also about life. About the things that matters most.

 What Matters Most

It's not how long we held each others hand
What matters is how well we loved each other
It's not how far we traveled on our way
Of what we found to say
It's not the spring you see, but all the shades of green

It's not how long I held you in my arms
What matters is how sweet the years together
It's not how many summer times we had to give to fall
The early morning smiles we tearfully recall
What matters most is that we loved at all.

It's not how many summer times we had to give to fall
The early morning smiles we tearfully recall
What matters most is that we loved at all.

What matters most is that we loved at all.

-Kenny Rankin- 

About new years and new beginnings - about life

 

I have learnt not to make promises just because year changes from one to another. I have learnt not to make plans just because of a new year. Above all, I have learnt both would be pointless. One cannot plan life. When the year 2016 changed to 2017, we raised a glass, me and my dear husband, and were grateful for all the things 2016 brought to us. Not all things were pleasant, easy, or something we would have chosen to live, experience. But I am certain those things were the ones that made the rest even more dear, precious, and beautiful.

 

A year has 365 days, mostly. It's a lot, when you think about it. At least when you cannot plan your next day. When you don't know if there would be a next day. To celebrate life is to give it a change. Normally we are too busy trying to define, mould or change our life to stop and take a deep breath or three, and listen. Just let it be and become what it should - or should have been long ago, given the chance.

No, I am not talking about making your life one big mindfulness exercise. I am just thinking aloud. My birthday is in January. I have used to changing my age around the same time the Earth gets older. It might lessen the glamour of new beginnings, being a January girl. At the same time, it makes them essential and natural part of my life. And thinking back, about last year... Oh, my.

 

In the New Year 2016 I didn't guess that in two weeks’ time I would lie in a hospital bed wondering if this would be it. I didn't see that I would be told I could never again continue my precious PhD about the Urban Culture in the Early Iron Age Northern Israel and surroundings, because my twisted genes and rare diseases have destroyed my sight, my brain, my body. I totally could have not predicted my ability to speak and write in Finnish would vanish in an overnight, one bright, sunny September day. Nor did I foresee cerebral stroke, well... A lot of things. But. I had no idea I would also enjoy memorable shooting session with Miss Windy Shop, I would design my first Varalusikka jewellery (or that soon later my husband needed to take the responsibility and make Varalusikka to work because I had not strength for it), I would discover that even if I have not strength for painting, I could use my iPhone and "paint" photos and discover a whole new world of Instagram.

You see? It's rather pointless to plan to ahead when your body does not speak the same language as your mind. (In my mind I would be writing my dissertation right now, instead of lying in bed, cannula in my arm and tubes saying drop, drop, and writing to you there -hi- about new years.) But even if your body is not as broken as mine, it might be the same. Carpe diem, they say. I don't. I say, let the moment go, let it be, let it come, and enjoy it as it is. Above all, remember, not all moments in life cannot be lovely pink rose petal dance, but it's worth living anyway. Because it might well be the moment of utter misery that is leading to the lovely pink rose petal dance moment. I want to believe it, anyway.

Country Cookies Recipe - Maalaispipariresepti

A delicious and super easy recipe for gluten free (and dairy free) cookies. Homemade cookies, coffee, and cozy autumn evenings... What a delightful combination.

COUNTRY COOKIES

200g butter or dairy free margarine

1 tbsp syrup

200g sugar

1tl baking soda

350g gluten free flour (Semper FinMix)

1. Whisk together butter, syrup, and sugar.

2. Add flour and soda, stirr.

3. Make two rolls of the dough, I use cling film to roll it without a mess. 

4. But it in the fridge to harden.

5. Preheat the oven to 200 degrees Celsius.

6. Open the cling film, cut the dough to ca. 2cm circles, put them in the baking tray covered with baking sheet.

7. Bake around 15 minutes.

8. Let the cookies cool in the baking tray.

Tip! You can make a douple sized dough and put annother half to the freezer. Just roll two rolls in a cling film and put them in the freezer. When you desperately need fresh, home baked cookies with your coffee, take a roll out of your freezer, cut to slices, and bake as mentioned above. Delicious, easy, and fast!

MAALAISPIPARIT

200g voita tai maidotonta margariinia

1rkl siirappia

200g sokeria

1tl soodaa

350g gluteenitonta jauhoseosta (Semper FinMix)

1.     Vaahdota huoneenlämpöinen voi, siirappi ja sokeri.

2.     Lisää joukkoon jauhot ja sooda, sekoita.

3.     Levitä 2 pitkää suikaletta talouskelmua pöydälle, kumoa puolet taikinasta toiselle, puolet toiselle kelmulle pötköksi.

4.     Kääri kelmu rullaksi, taikina sen sisällä. Painele taikina tasaisehkoiksi pötköiksi ja laita taikinapötköt jääkaappiin kovettumaan.

5.     Lämmitä uuni 200 asteeseen.

6.     Avaa kelmu, leikkaa kovettuneet taikinapötköt noin 2cm paksuisiksi kiekoiksi, nosta leivinpaperilla vuoratulle pellille. Taikina leviää jonkin verran uunissa, joten jätä taikinakiekkojen väliin tilaa.

7.     Paista uunissa noin 15 minuuttia.

8.     Jäähdytä

Vinkki! Tee kaksinkertainen määrä taikinaa ja laita kaksi kelmurullallista taikinaa pakastimeen. Kun piparihammasta kolottaa, nosta pötkö pakkasesta, lämmitä uuni 200 asteeseen, leikkaa pötköstä 2cm palaset pellille (ei haittaa, vaikka olisivat vähän jäisiäkin vielä), paista ohjeen mukaan ja nauti.

More pictures in my Instagram: harvinaisenkauniselama, feel free to visit.

 

HUOMAUTUS LUKIJALLE: Tämä on julkaistu vanhassa blogissani 29.102016
NOTE TO READER: This one was published on my old blog on 29.10.2016