well ..

... still indecisive what to do with this blog.

Just wanting to let my five followers know, I am still alive :-)
And swamped in Real life affairs.

internetstalking

abuse has so many facets.
One of them is, to troll other people, to feed off of their energy and strive in their efforts.

It is our choice, if we let it happen or not.

I did - unknowingly, gullable Aspie that I am - let someone do just that.

I do not care, if that troll reads this, or not, I want it public, that I have unmasked him and will not feed him any more.

He was so sneaky as to forewarn me, that he did find enough info to do what he started in the night from the 27. to the 28. of July 2010.

He was fed only once on the internet so far, and it will remain with that one incidence.

The message was blunt and short, and unmistakable, not ambiguous at all.

He has closed the door on himself and his plan hopefully does not work out.

Now to hope, he feeds no more, wrinkles up and fades away.

sleep lab, here I come ....

I was asking for a sleep lab investigation ever since my sleep patterns have started to be non present.
I am not willing to zonk myself out with any drowsy making meds and still wake up exhausted from a zombie like state of being switched off.

So I was referred from my new neuro to the Ear-Nose-Throat clinic in my favourite hospital.
I had to fill out a 7 page questionnaire and the doc was really relaxed with me.
He said, he has no idea why we should do the obstruction/snoring check, if I am not having any of those episodes.

So on the weekend of June 26. to 28.
I will be cyborgizized and can try to sleep in the lab.

It usually is around 3 am till I fall asleep and am awake around 8 again.
5 hours where I know from before the hemorrhage, that I needed 9 hours of sleep.
Being exhausted and feeling run over by a truck on a regular basis is just not the lifestyle I want to pursue.

So please wish me luck that they will find out what is doing this to me.
I have the initial talk with the sleep specialist tomorrow, and maybe, since we have three locations in the Mannheim hospital area, I can get into lab even earlier than that.

We will see.

grief and it's many facets

I read a blog post about grief and how you can comfort someone in the process of it and also how you can comment or behave to tick them off.

She is grieving about having lost her baby during pregnancy, not long ago.
If I have understood a little of her approach right, she will not bind herself to the loss, but go on with living the life she is living.

Grieving is a long process and goes in many stages.
It can take several weeks or several decades and everything inbetween and is as individual as your fingerprint is.

There is no way of being able to compare who is grieving more, harder or most efficiently, since you can only know how grieving feels for you, yourself, not how it feels for others, or how it is 'done properly'.

Her post inspired me to write my own essay of grief, her original can be read here:
http://eema-le.blogspot.com/2010/02/reproductive-
mishap-etiquette.html#links
It is her story, here you can read mine.

I wont go into the things which are so beautifully covered there already since she has found the right words for it, but add my own two cents to the theme.

Of course, the things you read here are my own fingerprint of grieving.

If people hear "grief", they firstmost think of the loss of ones closest family members, if they are pet-loving people, the loss of a furry family member.

Maybe some people, who are older already, might grieve about losing their eyesight or health in common, or they might grieve the good old times.
There are so many more things, you can grieve about though.

This is something very personal.

I am grieving about having lost the 'old' me that I was before the hemorrhage which changed around everything in my life in May 2008.

Back then, it was a near death experience, and I was as calm about it as anyone being the one experiencing it themselves can be.
That was back then, now is today.

Maybe I was calm because my left brain hemisphere was badly damaged, but maybe because I felt it was something inevitable, and I had to deal with it, would I have wanted to or not.

I was in a very calm place, not any more though.

Now, almost two years later, I can tell you that I loved that blissful state of not knowing wether I would survive the surgery or not. Wether I would wake up a total vegetable or with such big brain damage that I needed to be tended to for the rest of my life and sorely being aware of it.

Today, since the left hemisphere is 'back online' and the damage is not really visible any more, I should be back to normal, shouldnt I?

I am not!

There are some of those islands of calmness, and inbetween them the storm of life goes raging.
I have those strange headaches still which make some of my days misery in it's purest form.
Physical suffering is as bad as mental suffering, and dealing with pain is another part of this deck of cards called life.

I have those days when I feel all stamina has left me.

There are days where I can hardly keep my balance in a swaying bus, cant avoid asking a youth to get up and let me sit down, and them commenting that I am young myself and were to P**s off and not make them give up their comfortable seat.
I usually remain standing/more or less then.
There are days when my partial peroneus paresis is so bad, that I keep staggering and people mistake me for another one of those sorry little alcohol abusers and comment on it rudely loud or even trip me on purpose.
I usually let it happen, and try to forgive them for their ignorance.
There are weeks or even months when I run from doctors appointment to doctors appointment, to rehab sports to get body strength back to whatever needs to be done ...
not having enough time to keep to myself and let the brain rest and exaggerating all my neurological problems doing so.

Have I mentioned in this paragraph before anything of those every day chores like body hygiene, doing laundry, feeding and being with my beloved cats, spending quality time with my husband, seeing my nephews and niece grow up, doing some knitting or other hobbies, calling and chatting with friends and other pastimes?
I guess not, they must have fallen out of the bandwagon somewhere on the way.

Those are the times when I am in deep emotional pain, and comments like "It could have been worse, you could have ended up being much more disabled", "look at the bright side, you are still alive", "I dont know why you are so unhappy, you dont have to keep down a job, have all day to do whatever you please", "Why dont you go out and have fun?", "You are so young, wait till you get to my age, and you know what pain really is"

There are many more of those hurtful things that have been said to me and keep coming at me from total strangers and, which is even worse from former heath care providers.
I burn through them like a chain smoker through a packet of cigarettes.

Not because I love meeting new doctors and because I am an attention seeker, wanting to tell this story for the millionth time, no.

I just cant handle more emotional abuse from people who are supposed to help me deal with the aftermaths of this hemorrhage.
I need encouragement, acceptance of the problems I personally am dealing with, and a listening ear. What I need not is being belittled and ostracised.

Total strangers only see a young looking person sitting there and waiting for the bus, looking kind of sunken into a slump, sipping from her bottle of water or unsweetened tea, munching on some of those cardboard tasting rice wafers, having either a pale face or bright red head (due to the skin condition I have), wearing her big closed head phones, a pair of shades and a baseball cap with a wide bill, waiting for the bus around 3 pm.

What they all don't see is, that I am wearing the headphones with no music on, to shield my ears from having to hear too much of what was too much shortly after waking up that morning.
They dont know that the shades and cap are no style statement but to protect my skin and eyes from the too bright light of a perfectly normal day. They don't see that the band on the cap is turned extra tight to counteract the headaches, and that always bringing my own food and drink is not because of wanting to be the attention seeking person (I am not) but because of food allergies that have cropped up lately.
That my hair is not that short because I like the pixie style but because in November of 2009 I had a titanium plate implanted in my skull, where the infected piece of my own bone had to be removed in July 2008, and we had the hair shaved off to minimize the risk of another infection.
This young looking lady (I still look at least ten years younger than I am) is waiting to go home after a day full of overloading appointments that just 'had' to be met.

And believe me, those of you who read this are probably not the right adressees anyways, I am sorry for that.
I know, you care about me and forgive me for not updating my blog as often as I would like to.
I am happy for such tolerant friends, and I dont just say that, I mean it.

I am grieving the old me that died that day on the surgery table.
I am grieving her wit, her positive outlook on this mad world.
That she always had the energy to be a positive influence for people meeting her wherever she went.

Most of all I am grieving the loss, that the 'new' her is confronted with every day for the rest of her life.

She will always feel like this because memory will never go away.

Since this 'old' her died (which she will keep the memory of), she has the chance to get friends with the 'new' her and see, what qualities she can find in her new self.

But maybe this all is an illusion and all this 'new' and 'old her' stuff is just running after this illusion?

Would you like to join the journey and find out?

bloggen im Schwall

das zweite mal heute.

Ich habe vergessen zu schreiben, dass ich heute auf dem Weg zur KG eine halb gefressene Maus gesehen habe.

Die felligen, angenehm schnurrenden Schoenheiten auf der Couch sind auch gewiefte Jaeger und gefaehrliche Raubtiere.

Bitte versucht aber nicht, ihnen das abzugewoehnen, denn es ist ihre Natur.

Menschen mischen sich schon viel zu arg in die Ablaeufe der Natur ein.

Sieht man an unseren Wetterproblemen, dem Ozonloch, den Seuchen die ausbrechen, dem sauren Regen und vielem mehr.

blogging in spurts

second one for today :-)

I forgot to write, that I saw a half eaten mouse today on the way to PT.

The beouties with fluffy fur and pleasant purr are viscious predators, too.

Please don't forget that, and dont make them undo this behaviour, it is their nature after all. Humans mess into nature's ways too much already.

You can see this on our weather problems, the ozone hole, sour rain, epidemics, and many more things.

Strassenbahn gegen Auto

Wir waren auf dem Weg zu Dianas Neurologen heute, und hatten beschlossen, eine Strassenbahn eher zu nehmen und vielleicht noch vorher im Wolle Roedel vorbei zu gehen.

Es waere besser gewesen, beim urspruenglichen Plan geblieben zu sein.

Unsere Strassenbahn und ein Auto sind zusammen gestossen und ich habe den Nachmittag in der Notaufnahme verbracht mit Schmerzen in der Brustwirbelsaeule.

Es hat sich rausgestellt, dass es eine Prellung ist, und nichts gebrochen, aber es tut trotzdem ziemlich weh.

Besonders deswegen, weil ich ja auf die meisten gebraeuchlichen Schmerzmittel allergisch reagiere.

Doktors Anweisung ist also, es langsam angehen zu lassen, und Muskelrelaxanzien zu nehmen.

Der Autofahrer scheint nur ein wehes Ohr vom Airbag zu haben, und ein paar Kratzer vom geborstenen Seitenfenster aus Sicherheitsglas.

Es war ueberall im ersten Teil der Strassenbahn Glas, wo wir gesessen haben.

tram vs car

We were going to an appointment with Diana's neurologist today, and decided to take the tram earlier and maybe go to a yarn shop before.

We better should have sticked to the original plan.
Our tram and a car crashed into each other and I spent the afternoon at the ER with pain in my thoracal part of the spine.
It turned out to be a sprained area, and nothing broken, but still very painful.

Especially since I am apparently reacting to the most common pain medications.
So muscle relaxer and "taking it slow" is doctors order.

The car driver seemed to have just a sore ear from the airbag going off and a few scrapes from the security glass of his side window having been shattered.

There was glass everywhere in the front part of the tram, where we sat.

seizure activity on and off yesterday

I was grocery shopping around 11 and when I came back from it, I had a sharp pain in the whole left hemisphere.

From 2 pm on there were jacksonian feelings in my leg on and off. I will count them as seizure activity as long as my neurologist wont tell me otherwise.

Anfaelle

Gestern war ein Tag, der mir mehrere Jackson Maersche beschert hat.
Angefangen hat es um 14 Uhr, als ich schon eine Weile vom Einkauf zurueck war.GG 12, direkt zurueck vom draussen sein, hatte ich einen sehr starken auf die linke Hirnhaelfte beschraenkten Schmerz.

Seitdem war das elektrisierte Gefuehl nie ganz weg, aber auch nie so deutlich, dass ich jetzt wusste, ob ich das als Anfall werten soll oder nicht.

Solange mich mein Neurologe eines Besseren belehrt, werte ich es jetzt als Anfaelle.

Weil hier englisch und deutschsprachige Leser lesen, und ich niemanden aussen vor lassen moechte, der sich mit den komischen Uebersetzungen von Babelfisch zufrieden geben muss, werde ich zweisprachig posten.
Wie in der Vergangenheit auch, nur mit dem Unterschied, dass ich es auf zwei separate Mitteilungen aufteilen werde.
Auf diese Art hoffe ich, dass die einzelnen Mitteilungen nicht mehr so romanhaft lang sein werden.

Also, falls es da eine Mitteilung gibt, die Ihr nicht lesen koennt, ist es aller Wahrscheinlichkeit nach in der anderen Sprache.

:-)

Appearance change on the blogposts/ Aenderung in der Art der Nachrichten

Since I have german and english readers here, and want to not leave any one of you with the wonky translations of Babelfish, I am going to post bilingual, as in the past, but make two separate postings out of it.
I hope, this way, it is easier and makes for not quite so epic posts.
So in case there is something, you cant read, it is most likely in the other language :-)

ribbon colours and their meanings

Today, I was looking at a list that decoded the awareness ribbon colours.
Since there are several meanings to one colour, it is interesting, what is associated all with the purple one.

Cystic Fibrosis which two of my cousins have (had) Marion passed away when she was a little girl, and medicine was not as far advanced back then to prolong her Life. To the same family was born a boy with it, too and he was a Methusalem, outliving the prognosis the doctors gave over decades. This was possible because of the inhalative
treatment and supplements replacing, what his body could not produce itself.

The purple ribbon also wants to raise awareness to religious tolerance, an issue, I really want to emphasize a lot. No matter what religious sect we belong to, we will never know, if ours is the only "right one", so we should accept the diversity.

It also is promoting remembrance and awareness of violence against women, which I was subject to for over eight years of my young life, and it left me with lots of emotional scars.

Alzheimers disease is another meaning to it. We lived with it, my Grandma was having it, and taking care of her at home was a real challenge for us all involved.

Last, but not least it also wants to raise awareness of Epilepsy, which I have to deal with since my brain surgeries in May,June and July of 2008.

Isnt it strange, how so many of the things going on with me or in my family are associated with this one awareness colour?

So spielt das Leben

Ein Telefonat, und ich weiss, wie ich eine Person gluecklich machen kann und ihr das Leben ein bisschen erleichtern.

Auf die Art kann ich sie aus der Ferne Umarmen, und mein Wollschrank wird leerer.

Beide haben was davon.

the circle of life

It was a phone call and an exchange of what is going on in our lives that sparked an idea now, how to make the life of this person happier and give her a hug from far.

I love, when such things occurr, and I can do a stealth project for such beloved people.

I wonder, how she will perceive it.
She will help me reduce my yarn stash, too :-) One hand washes the other.

It will be made of chunky wool and be warm and leaves my stash cupboard a little more decluttered.

still recovering/erhole mich immer noch

Since the surgery is over and everything technically went fine, I still need time to adjust. Sleep is a catastrophe at the moment. Meaning not getting enough of it at appropriate times.
I sure hope, that this will not escalate to a maddening situation.


Nachdem die OP jetzt rum ist und technisch alles glatt ging, brauche ich immer noch Zeit, mich einzugewoehnen. Schlafen ist im Moment eine Katastrophe. Das bedeutet, ich kriege nicht genug und auch nicht zu angemessenen Zeiten.
Ich hoffe nur, dass das nicht zu einer wahnsinnig machenden Situation eskaliert.