Good Enough

I'm home. I'll tell you everything that happened in hospital, later, when I am ready. Thank you for all your love, support, and kindness, my dear friends all over the world. You can't imagine how much your encouragement mean to me. You reminded me about the beauty of life, of friendship, of hope, when I needed it.

I didn't get any help from Finnish public health care. What I did get was an experience that could cause nightmares for a long time if I'd choose that way. Which I won't. Life is too precious, too beautiful, and too fragile to spend in bitterness, negativity, and hatred. So, I surround myself with all things beautiful in life, with as much love as humanly and heavenly possible, with smile, with gratitude. And, I'll find a way. If one door closes, there are plenty of others, and after that, windows...

I have lived my whole life being honest and real, just me, not pretending to be anything more, anything less. This incident thought me one thing. Being honest isn't always the best way to deal with bureaucracy. Being just myself isn't always good enough for someone wanting to think ill of me. Being honest and real gives others so much weapons that being real might turn against us. But you know what? I have thought this a lot, and cannot regret, as I can look at the mirror and smile to myself, I can stand behind my words and behaviour. I don't need to regret anything. Being just the real me has always been the right thing in the end.

One song fits so well to my thoughts I'd love to share it with you.  (You see, I'm really back, with all the quotes and songs.) I've told you many times how much the lyrics of Finnish artist and song writer Juha Tapio mean to me. They give me strength, hope, and courage. This song, Kelpaat kelle vaan, is one of them. "You made it, and you're good enough for anyone." I think we all need to hear it sometimes, we made it, we are enough. Just as we are, real me and you, it's enough.

Kelpaat kelle vaan/ You're Good Enough for Anyone

Juha Tapio

For a moment still, this side of the world

for a moment still, sleeps a white night

You wonder how something can hurt so much

Your best years, they were all stamped on the ground

I can't know even half of your pain

all the words stay useless in the air

but in one morning, I know it,

you wake up to see

you made it, and you're good enough for anyone

And you're beautiful, even though you don't feel like it anymore,

even though they took your faith in humans

For a moment still, half of the world sleep

just a moment still, the bright morning will arise

I can't know even half of your pain

all the words stay useless in the air

but in one morning, I know it,

you wake up to see

you made it, and you're good enough for anyone

An update

Earlier I wrote a blog post CALL FOR HELP, this: http://harvinaisenkauniselama.blogspot.fi/2017/09/finnish-cfsme-patients-calling-for-help.html

Now the situation is… We CFS/ME patients in Finland are treated like lunatics. I have heard of urgent invitations for psychiatric examinations, of diagnosis codes changed from neurological to psychiatric, prescriptions gone missing in the national medical database. Officials state now that the proper treatment for CFS/ME in Finland will be GET and CBT, even if these treatments are considered word wide as highly questionable. This all happening in Finland, celebrating the 100^th anniversary of independence. 

As for myself, I’m in hospital right now, as my public healthcare clinic promised to look into my condition. I have been here now two days, and only things happening are that although nurses are very friendly, I really need to look after myself. I don’t get my myasthenia gravis medication unless I specifically ask for it, and it’s a vital medical treatment, after all, for MG. My hydration levels are too low, and my kidneys are not functioning well, but nobody is interested. Usually I’m extremely well looked after in hospital, not now. It seems nobody wants to do a thing in fear of consequences. Not even basic medical care.

I was told today that the official stand of public healthcare is now that they will not support my medical treatment that I have had for 2 years and 2 months without any side effects or harm. They do admit that it’s good for me, that I need it. But they won’t prescribe the medicine for me now that my own doctor can’t. (He can’t because officials have restricted his rights, even if this is not actually legally justifiable decision.) In fear of consequences by bureaucrats. And that's a direct quote.

They admit I have so many rare illnesses that nobody knows how I react to medicines. So they are now trying to figure out or experiment how they could replace a medical treatment that is scientifically justified and used for two years with excellent results. Because of bureaucracy, the medical treatment supporting my autonomic nervous system will be closed down, and nobody knows how I’ll react. This is more like torture than proper medical care. Patients can and must be treated individually and off label treatments can be used if they are medically justified and safe, says Valvira, the bureau responsible for this. And not single one doctor in Finland dares to do so now. 

I won’t give up. I need plans B-Å now, but I’ll go through every one of them. I’ll stay in hospital for couple of days now, but I’m determined to go home and find a way to continue the one treatment helping me to cope and balance with all my conditions, among them myasthenia gravis, alpha-1-antitrypsine deficiency, Ehlers-Danlos syndrome, CFS/ME, brain injury and much more. There must be a way to find justice for me, for other Finnish CFS/ME patients, and the doctor in trouble now after trying to treat patients as humans.

Is This Really Happening?

Can you believe it? I'm in hospital now, and it's officially the first time in my very fragile life I'm honestly fearing for my life. In hospital. In Finland celebrating the 100th anniversary of independence. Highly educated, highly polished, highly praised country of Scandinavian high technology, sophistication, science, and civil rights. 

I have with me a huge folder of scientific medical research texts, official statements, all stating that I need and are entitled for my empirical research medication, to the point of molecule level justification why I need this medication keeping me literally breathing and alive. (The one bureaucrats decided to take away from me when they decided to restrict the rights of my M.D. without legally pounding justification. The one bureaucrats admit I need but nobody wants the responsibility to write prescriptions.)

And what I hear? After a whole exhausting day of taking care I get my "appropriate and real" myasthenia gravis medication on time (the one this specific clinic has prescript in the first place), as I need it every 2 hours and not once got it without especially asking for it, I heard matter-of-factly "your treatment will be closed down tomorrow". Yes, you heard me. Closed down, not like "we'll discuss about your medical issues tomorrow" or "we'll think about this medical treatment tomorrow" or even “we have read all the papers and decided…”. I'd be very interested indeed to hear the scientific justification for the decision if I wouldn't be this terrified. 

How this can be happening in a highly-sophisticated country like Finland? They don't listen to an individual experience of a citizen nor scientific facts. Just because, you know, power feels so damn good.

Lost into the Machine

Rainy candlelit autumn evening, just perfect setting for some writing. Nothing has changed in the absurd health situation, yet. Probably won't either, but at least I've tried my best. A wonderful journalist came today for an interview, I'll tell you when it's in the paper. I got a phone call from the chief physician of my hospital clinic, and I'm now going there for a week, next Wednesday. Then we'll know more. The problem is, though, they'll have absolutely no way of knowing how to take care of me, so I need to write a manual... I've too many experiences of how I've been given wrong medicine in hospital or nobody knowing what to do when I fell unconscious. But I hope this is sorted out somehow now. I want to believe in miracles. I believe in miracles. It's just that I don't believe in health care system, Finnish authorities, or their humanity anymore.

One unpleasant surprise today was to find out my kidneys don't like that they are left without one essential treatment because of all "this". I've got infusions for 2,5 years, every 3 weeks. Then, in the beginning of September, someone suddenly decided it might be harmful, as there is the name of the banned doctor in my medical papers. So now, 3 days after I should (in normal situation) have had the infusion, my body does not understand that it has been denied the essential care, and starts to be cranky. Now I need antibiotics. How nice. Plain old natriumchlorid was thought to be harmful for me (after 2,5 years of no side effects whatsoever) and immediately after it was denied, I need antibiotics as my kidneys can't handle the situation. Antibiotics are just fine? I feel like lost in a crazy wonderland of bureaucratic nightmare. Naturally I have a song for that too. Koneeseen kadonnut. (Lost into the Machine.)

 Lost into the Machine

Juha Tapio/Toni Wirtanen

What's lost into the machine

you can't get back

worn out, used

to feed the circle

Maybe (we) trusted too much,

that the time fixes

that, which for (we) made

so much effort

to bring down

that, what was meant to be beautiful

Pain dies by shouting

naked on the floor

how long it lasts

no, that can't be known

Who is hurting and how much

that's probably the only question any longer

when we've reached the point

when nothing is certain

The longest hours in the, world

you get stuck in their grip

you carry them the until the end

though you don't always realise it

What kind of is that heaven

That we never found

I have heard so much about it

some of it even from my own mouth

You can keep going as far

as you can convince yourself

Pain dies by shouting

naked on the floor

how long it lasts

no, that can't be known

Who is hurting and how much

that's probably the only question left

when we've reached the point

when nothing is certain

Some of us are unhappy

burned but numb

penitent but unfaithful

more than restless

The principle is absolute

argument is solid

equation maybe impossible

What do you mean, as if merciless?

Pain dies by shouting

naked on the floor

how long it lasts

no, that can't be known

Who is hurting and how much

that's probably the only question left

when we've reached the point

when nothing is certain

very insufficient translation by harvinaisenkauniselama

I'd Tell You

I have often been told to write a book about my story. About my unique, beautiful life. I'd love to. I'd tell you everything. 

How it feels to look through the eyes of death into the eternal light. 

How it feels to touch the hand of God, how it feels to let it go and come back. 

How it feels to get another chance to live, how it feels to understand that the pain is not over, it will continue, until you touch the hand of God once again, and still being grateful for the chance. 

How it feels to understand you have this only one chance, that even with the creased, grumbled body nobody knows how to handle, it's your only one, and it's only you who can make it either beautiful and precious, or indifferent path of bitterness and dark pain.

How it feels when you don't know if this is the last breathe or if your body still gets the strength to take another one, there, just there, in front of your children, about the evenings lying unconscious on the floor and your children covering you with a blanket of love.

How it feels to hear your heart might now have finally given up, to see the worried, kind eyes of a doctor and accepting it all.

How it feels to realise you have to give up your life, your dreams, your entire being, your self, and start all over again.

 

How it took so many years, so many tears, through the pain, through the sorrow, through the illnesses, through a brain injury, through oh so much, to get here where and who I am today, me just as I am, with nothing else, nothing more, or nothing less.

How it feels to understand you need to be strong enough to live but vulnerable enough to love.

Only, I might never get the chance. If I do, I will. I promise. As this is the beautiful, unique life of mine. And remember, yours is too.

Lights on the Verges of Darknesses

Sometimes you are given just the words you needs. Words you have inside of you but cannot connect to each others to have the meaning your whole being wants. Yesterday was a hard day for me. One more in a row of dark, seemingly hopeless stream of hours we define as days. I struggled to see the light, to hope. I put my feelings into words in my IG feed like this: 

I'm exhausted, but not going to give up. Every day is a miracle in itself, every day is full of those little things that makes the life worth living.
Everything in this absurd situation is floating like a strange universe, having a time zone entirely of it's own. Nothing happens and at the same time, too much happens. Too much is needed to be done, too much for such a tiny piece in an universe like me. But, I am lucky enough not to be alone, as there are so many of us in this situation. And, I have one huge advantage no other has. My dearest husband, carrying me when I cannot move, making sure I breathe when I can't, showing light when there is none.
The situation at the moment is, that every single bureaucrat seems to admit I need help, that my life is in danger, nobody can deny it. But nobody wants the responsibility either. So, still floating, not drowning though. There are too many other near drowning because their mind is not as strong as mine, who can't find the famous Finnish SISU because they are in too deep waters, maybe without a husband to say "hey, it'll be all right", without a job, medical care, social benefits, without hope. I have to be grateful for having such a strong caring surroundings. Also, I am as thick headed as only a person born in the Finnish province Satakunta can be. We tend to go through the grey bedrock, as they say. My brain injured head may not be able to take that many hits, but going through anyway.

Then, in the evening, I heard a song that was entirely unfamiliar to me. (As you may remember, I am a bit of a musical snob and still learning to listen to music less than couple of hundreds year old, so a song unfamiliar to me is not an exception, it's more like a rule.) This one: Valot pimeyksien reunoilla (Lights on the verges of darknesses). It couldn't describe with any greater accuracy the thoughts and feeling inside me I tried to put into words earlier yesterday. I'm not sure if you are able to watch this Finnish video, but if you can, please do, as you will then understand the radiant warmness, the glorious, light hope in my heart now. Just in case it's not available for watchers abroad, here is a link to the song on Spotify. The translation is a bit prim, as Finnish is much more flexible than English.

Lights on the verges of darknesses

 (Toni Wirtanen/Kaija Kokkola)

Don't believe in songs, they'll make you a dreamer

they could make you dig things

your mind tries to protect you from.

They tend to mess up all the thoughts

and leave you in chaos.

Every one of us is a path to somewhere

but the wisdom is to understand

whom to follow for a long time, when to turn away,

and that through a human, you can never travel into yourself.

All the endless beauty, all the insanity

all the whipping hopes, all the indecisiveness,

in the end, are pieces of the meaning, part of the mystery,

lights on the verges of darknesses.

Remember that all the greatest fears of yours

are reflections of your hopes, turn them around

and you'll find, in your hand, the keys to them

and that it's easier to forgive others, than stick to a grudge.

All the endless beauty, all the insanity

all the whiping hopes, all the indecisiveness

in the end, are pieces of the meaning, part of the mystery

and part of the truth.

Lights on the verges of darknesses

are sometimes dim and sparse,

you have a force sized of an ocean inside of you

which you can harness as your guide.

This is just an empty shell, which you must fill,

this is the brightest of lights, this is an endless night,

this is a heartbeat, this is an eternity.

Lights on the verges of darknesses

lights on the verges of darknesses,

lights on the verges of darknesses,

are sparse but exist.

All the endless beauty, all the insanity

all the whipping hopes, all the indecisiveness

in the end, are pieces of the meaning, part of the mystery

lights on the verges of darknesses.

Translation based on lyricstranslate.com, modified by harvinaisenkauniselama