Tuesday 14 November 2017

A True Story




I have tried to write about my stay in hospital for a long time now. I just keep staring at the empty screen page and wonder, what I could say. Actually, what I keep wondering is, what exactly happened. The most important question I'd like to get an answer some day is, why.

I have had nightmares every night since I got home, which is very unlike me.  I think it tells a lot about everything. It would be easier to handle, if I had the why part figured out. Any reason would do. But there's none. And that, my friends, is terrifying. Which is why I'm trying now to tell it all, as I feel it's a story needing to be told. Despite the fact that I am absolutely horrified to do so, as I suspect it will do me no good. But, as this seems to be the way how Finnish CFS/ME patients are treated in general now, it must be told. It can't continue like this, honestly. We need help.

As you know, I have had a medication for my rare illnesses that is not very traditional (it’s a research I’m voluntarily taken part of), and it has helped me a lot in these part two years. I have been able to live without constant fear, pain, and struggle that were part of my life before this particular medication. It has helped me to live a life that feels beautiful, meaningful, and worth living for. For bureaucratic reasons, this medication is now downright impossible. 

I tried to find a way to continue the medication through public healthcare. I thought that in modern society of Finland celebrating it’s 100th anniversary of independence this December, famous for its education, high-tech, and human rights, there would be a way to support the life, well-being, and health care of a citizen. I was confident I’d get help. I didn’t. I went to a Finnish hospital to get help. I came out in much worse condition I went in. 

I try to sum things up, but it’s not easy as there happened so much and there’s absolutely no sense in most of it. So please, bear with me. 


In the end, after many efforts, I got an invitation to go to the hospital for couple of days, to see how the medication works and to decide what to do with it. That’s what I was told. This is the first strange part. I was never told, that I was there in order for them to take the medication off and see how it goes. I only read it afterwards from the medical report that “the patient comes to hospital for the cancellation of the medication”. That teeny tiny little detail would have been nice to know. 

My medication was switched off on the day 3. (With no explanation, what on earth I did there the first two days - despite tiring myself, as I couldn’t rest or sleep.) About half an hour later I wasn’t able to move my legs or hands. My breathing got heavier, and I drifted from consciousness to near or full unconsciousness during the next days and nights. My sugar and temperature levels varied a lot, blood pressure dropped quite considerably during the next days. I was able to whisper at times, often I couldn’t do even that. I needed catheterization as I couldn’t feel my body. I had a UTI. I couldn’t speak or swallow or move if my eyes were open, and vice versa. It was too much for my system to do both. I was dehydrated. I needed to be fed. I needed to be turned in bed as I couldn’t move. There is no mention about most of this all in the medical report. (Oh, they did write I had no difficulties to close my eyes. Yay! I didn’t. That part is true. They only forgot to mention I couldn’t keep them open.)

The medical report states that cancellation of the medication completed successfully. I wouldn’t exactly choose a word “successfully”, unless they mean they didn’t kill the patient. I think we might have a bit different point of view here, as I think if a patient was able to walk, speak, eat, sit, write, see, wash her hair, even pee before the cancellation of the medicine, and after that wasn’t able to do one single thing of that list, and left the hospital struggling to be conscious just to get out of there as quickly as humanly possible… Well. I wouldn’t describe it as a success. I’d go for catastrophic.

Pain is something I am quite familiar with and used to, and I can handle it rather well. I’m so used to it, I don’t even notice it normally, but with the extreme noises in the stroke surveillance, resting was literally impossible. I couldn’t think my migraine and neuralgic pain away - even if I tried my best. (Practicing mindfulness in a room with 3 televisions on, surveillance equipment peeping, people talking and moving all day long, is not the easiest, I can tell you.) It turned out that as simple thing as painkillers was hard to get. But, on the other hand, medicine in general was a bit of an issue, as getting my myasthenia pills on time was not easy either. 

Most of the time I wasn’t able to eat myself as my muscles just denied all collaboration. I needed to be feed. Swallowing was so hard work I couldn’t drink enough, even if I knew how extremely important that was. Later it turned out my dehydration was in the verge of catastrophic already when I arrived in the hospital, but it was ridiculously hard to get simple iv saline – as, you know, that was one of the medication I was denied after the bureaucratic show. For 2,5 years I got regular saline infusions to support my hydration, nutrition, and malabsorption every 2-3 weeks. Suddenly it was considered possibly harmful. So, giving me some in hospital seemed to be a bit of an issue. (I mean, the basic natriumchlorid infusion, seriously? Dangerous? In dehydration?) 

I have a very impressive medical, scientific justification for this simple iv saline treatment, and one of the reasons is that it supports my kidneys that are not functioning as they should. This important treatment was cancelled on beginning of September, and 3 weeks, 3 days later my body started to react. I have had now 3 antibiotics for UTI and there’s no sign of it getting better. The inflammation got very evident in hospital, but it was only because I repeatedly asked for the results, that anyone reacted. Oh, there is no mention of the UTI in the medical report.

A note about the catheterization. There is no mention about that in the medical report either. Nor about the fact that there was ca. 800ml urine in my bladder before the nurses put an indwelling catheter. Nor about the fact that after the chief doctor heard that nurses had put an indwelling catheter two days ago, and ordered them to take it off (as I just needed to get a grip and walk to the toilet), catheterization was needed several times as it’s just not possible to go to the toilet if you don’t feel your bladder, your legs, or the need to pee.


I left the hospital after 8 days, after two doctors (and half of the staff witnessing it all, no way to have some intimacy) came to tell me they have “interpreted your 2 years old ENMG results again and decided you never had myasthenia”, instead they gave me a psychiatric diagnosis. Yes, I’m serious. Don’t laugh. This is not a joke, unfortunately. They told me I can choose to stay in hospital for several weeks or go home. After few hours of hard thinking, I choose to go home, as I knew nothing would change either way. Only, in my papers there’s no mention they gave me option to go home. I’ve received about 4 reports now stating the patient left the hospital without permission. 

Past few years I have heard a doctor after doctor saying that with all the different autoimmune diseases, all the autonomic nervous system dysfunctions, all the rare conditions, it’s impossible to say what’s what and it’s hard to find effective ways to help. But now, suddenly, it’s all psychological, my mind causing it all. That would be a teeny tiny bit easier to accept without few facts.

First. “Patient has no psychiatric problems nor need for psychiatric care” reads in my papers, written by the chief psychiatric of the same hospital some months ago, just to be sure my problems are somatic, not psychological. 

Second. I have measurable test results showing my medical treatment actually works, but they didn’t want to see it. In fact, they didn’t read the medical justification for my treatment either, as “there’s no point, you imagine it all”. As a researcher myself, I do actually highly object it. How is it possible that pure facts are ignored, and instead things are arranged to look like they wanted? In science, it’s called forgery. I doubt it’s different in medical science either.

Third. For all the years anyone who has even tried to solve the mystery of my several rare illnesses and their combination, how they affect each other, and how to help me, not once, not one single time they have hinted that this might all might be psychological. (With the exception of one doctor shouting that accusation at me when insanely furious, but that wasn’t a diagnosis way of expression, that’s was only an insult.) I had an accident and got a brain injury. I imagine it? It’s psychological? I have alfa1-antitrypsine deficiency. I imagine the deficiency of ATT in my blood and also, I imagine the genotype MZ? I imagine Ehlers-Danlos syndrome? (Not to mention psoriasis, migraine, asthma, all the discus generations, POTS…?) Several doctors have diagnosed that I have a severe dysfunction of autonomic nervous system, and it’s even measurable, but it’s only in my imagination? I’m also totally imagining also the dysfunction of dopamine system? Oh, and myasthenia gravis? Imagination too…

And maybe fourth, I should mention here the obvious. There’s no point in hiding or trying to avoid it. After all that happened, there’s no point denying that the switch of diagnosis was purely personal revenge with no medical justification. All that was left out of the medical report, all the bend or even false things there, all the contradiction between what I was told in person and what is said in the reports, all the promises of help, even the promise of not changing diagnosis, not to mention the “care”… 

I have no faith in Finnish public health care anymore. Anyone knowing a good lawyer?

Tuesday 31 October 2017

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

Thursday 12 October 2017

An update



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 100th 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.

Wednesday 11 October 2017

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.

Thursday 5 October 2017

Paper Waxing Tutorial



Paper waxing is fun, easy, and a really quick way to do something different with your papers. I tried it a while ago and took photos of the process, so now I'm able to make my first tutorial ever. 

I tried to wax vintage tickets, Classiky papers, tissue papers, silk papers, book sheets, Lamp x Paperi stickers, coffee dyed papers, even a collage I made using washis, stickers, and glued papers. I also tried how stamp ink and laser printed paper react with wax. Quite fine, I think. Even the glue, washi, and stickers hold. Different papers have different textures and I found some absorb more wax, others less, and they react with heat differently.

This is how I did it, and please feel free to have different methods, and, please note that this is a very unofficial way of doing it. I just figured out it could work like this.

YOU'LL NEED:

- papers you want to wax

- old candles, crumbled to small morsel

- baking sheets (at least 3 sheets)

- kitchen paper roll

- iron and iron board


HOW IT WORKS:

1. Pick the papers you want to wax. Spread a baking sheet to the iron board, and put your papers on the sheet. Spread candle crumbs on the papers, and add another sheet on top. Spread another sheet on the table near you for the waxed papers.


2. Heat the iron, and iron over the sheets. You'll see how the wax melts and spreads on the papers. You might need to adjust them a bit and add some candle crumbs if the result is uneven. (Or, do it like me, and let it be just as it turns out. Different textures, different out comes are all welcome.)


3. Pick the waxed papers and put them to cool on to a baking sheet or paper or whatever you want to use, but please note they are a bit creasy, so you might want to cover your table. 


4. After cooling, check if there is too much wax and put the papers between two kitchen papers and iron once more, this will absorb the extra wax.




 WAXING STAMPED AND LASER PRINTED PAPERS:

I noticed the result is betters if you put the stamped or printed side of the paper towards the iron board. This might prevent the inks to spread with the wax. I tested this several times and noticed that with our printer inks, the black ink has a bit larger tendency to crackle than other colours. So, test your inks with a bit less valuable pictures. I found it rather charming how an uneven and crackling outcome of the waxing process makes the pictures look like vintage photos.


I hope you like the waxing as much as I do! Experiment with different textures, colours, prints... I'd love to see how your waxing turn out! Tag me in Instagram @harvinaisenkauniselama or leave a comment, thank you dear!

Wednesday 4 October 2017

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

Sunday 1 October 2017

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.

Saturday 30 September 2017

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