My Story Part 3. Quiet Miracles.

This is Part 3 of a story I'd love you to read. But please, please darling, start from the Part 1., here.  

 

Part 3.

Tiny Miracles.

 

When nobody in the public health care system didn’t took me seriously, I found a private specialist who was able to help me. Who understood the mechanisms inside me going all bandit. He prescribed me some meticulously chosen (but just ordinary, may I add) medicines. Like something to help me with my restless legs, so I could sleep at night. Something for my migraine, so I could experience a day without constant, chronic headache. Something for a lot of symptoms I had, one by one, making me feel just a bit better.

 

He actually got most of my illnesses and symptoms and conditions right ridiculously accurately by just listening to me, without the extensive examinations that took later place in the public healthcare system, and which all concluded on the same results this specialist had predicted. All of results which, naturally, then were decided to be irrelevant and were left untreated, of course, because it doesn’t matter if one has something wrong in her body whichever way it was examined for, because the wrongness’s were all in different parts of her.

 

Somehow, during the journey from one clinic to another, I was sliced into tiny bits and those bits were scattered into the hallways of the hospital, unforgotten, irrelevant to each other. Nobody ever took time to take any notice of the big picture in the public health care system. Nobody ever cared to look all the test results together. Findings in lungs of a person is a completely different thing from findings in heart of the same one person, and the same goes with the rest of the findings of the rest of this persons pieces; they need not to be considered as a whole, in the context of one body. Only this one private specialist did that. He took notice of me, as a whole human being.

 

This specialist explained to me (in so painstaking detail that a person with brain injury and memory problems couldn’t ever digest it all) that some of the chronic illnesses I had, combined with my brain injury, had made my autonomic nervous system to collapse. (Or something. I’m still a theologian by education.) That I had, along with all the other chronic illnesses, what one could also call as (let’s whisper this) chronic fatigue syndrome, caused by all of these other autoimmune diseases. I’ll let you know, in Finland, the three words chronic, fatigue, and syndrome combined, makes a curse word that you should avoid, at any cost. Which, in turn, I learnt only the hard way. But this is actually irrelevant, as I don’t need anyone to tell me if this c and f and s is existing or not, or take sides, that is not my main diagnosis, or even in the top 20.

 

I started to feel better because of those simple and well targeted, commonly used medicines. It didn’t happen in an instant. It was like the first rays of sunshine that in the hard, cold, long winter suddenly, one day, start to feel they contain a whisper of a promise of spring to come. Slowly, oh so slowly, I was waking up. Which meant that when this private specialist offered a place in his medical research, I gratefully accepted it. (This ground breaking research is still something I cannot speak about specifically as it is an ongoing one; and I am sorry it makes the following story more difficult to go through with you, as I cannot explain you all of it. I need to leave out some simple things that would make it all make more sense.)

 

After 1,5 years of this medical treatment I got via medical research, I was so much better I could walk short distances. I could draw. I was even able to fiddle a little with my violin, for the first time in about 6 years. I had started to write poems. I had started to journal. I had made friend all over the world via Instagram, I had penpals here and there. I was social, even if from my own home. I could read books; I could actually hold a book and read more than two sentences. You cannot imagine what it meant to a researcher… I could stand without falling right away. I didn’t lose my consciousness every single day. 

 

 

The public health care doctors treating me, mainly because of my myasthenia gravis, knew about the medical treatment I got, and the effect it had on me. Everything was fine, it was even said aloud several times, how they thought it had positive effect on my myasthenia, too.

 

There were continuous improvements, tiny glimpses of a future so much brighter I had had not courage to hope for, for a long time. I was optimistic that someday I would be much, much better and my life a bit easier.

 

Expect, suddenly, everything collapsed.

 

The whole story of what happened next to the specialist is not my story to tell, but to sum up, it seems there were the usual orchestra playing; envy, fear, revenge. Wheels of bureaucracy, at their very best. It was not accepted that someone actually was able to help these (curse word) *chronic*fatigue*syndrome* people here in Finland, with good effects. Authorities restricted his license and rights to take private patients, and although later it was decided in court that this was illegal action, nothing has been done to it. (Talk about justice of a constitutional state, proud of its excellent reputation of being Always Good.)

 

My rights for a better future were restricted along with his license.

 

And now we start to get into the point of the story. But you see, you need to see me through the context of the past, so could understand the following events. You need to understand I had several years of chronic illness behind and had just had a possibility to start believing there’d be a brighter future ahead. I had got some of my performance and health back, I had got my creativity back, I felt I was getting my life back.

 

I was in terms with my disabilities and with my life, I was happy and content, and I was not voluntarily giving it all up, because some bureaucrats had something against one doctor. As one MD later put it so well; just because they restricted his license does not mean it also made your diagnosis and illnesses and need of medical treatment disappear. They tried to make that happen, though.

 

Here we go.

 

I run out of my medication I got through the medical research pretty much the same time his license was restricted in September 2017. The medication I got through his research balanced my myasthenia medication and cleared all the side effects.

 

You see, the medication did not only improve my health, it also made my myasthenia medication balanced. Treating myasthenia is tricky at its best, as weakness, caused by exertion, makes it so unpredictable. You need to balance between too much and too little of medication. Take too much, and you have cholinergic crisis (in short, you can’t breathe or move), too little, and you have myasthenic crisis (in short, you can’t breathe or move). This ground breaking medical treatment I got through the private clinic’s medical research, balanced it all for me. Without it, it was either myasthenic or cholinergic crisis to choose from.

 

I could not bear to think about the unbalanced myasthenic medication, nor about falling back into the me I was before the medication, bedbound, now that I knew there was so much more. I could not bear to think how our children would cope if I would get worse again. I simply could not be without the medical treatment, but the medicines were about to finish, and the specialist wasn’t allowed to write a re-prescription for me. I had to find another way.

 

So, I did the one thing I now know was absolutely the worst thing to do. I asked help from the neurological clinic of the public health care district’s hospital I was having a care relationship anyway, for the past 2 years, and was treated and monitored because of my myasthenia. I asked help.

 

One day I hope, I will understand why it all happened. What actually happened.

 

 

End of Part Three of Ten.