breathing is highly overrated

Having Asthma is a bummer, and you need to take medication every day to keep your lungs functioning as good as possible. Exercise is important, best be done in fresh air.
It is recommended to go jogging twice a week for half an hour.
Aerobic training is the key.

So ... what are you supposed to do in the season of flying around germs?
As a person with asthma
you better dont get a common cold.
It makes normal people feel miserable for a week.
They complain about how they "cant breathe" with that stuffed up nose, and how their chest hurts from all the coughing.

Now imagine how it feels for someone with asthma, where the bronchii will spasm with every cough, no air at all being able to go through when they do that,
and all chemicals (perfume, smoke from the apartment besides the one you are in, deodorant aerosols and so on), cold, damp air, exertion, cause coughing fits in addition to the ones, you have because of that cold.

The antiinflammation medication you need to inhale can not get to where the inflammation is because of the mucus, crap that is built up on the mucous membranes. You need to loosen it up and cough it out, and there the circle closes, that is hard to almost impossible when there are those spasms.

So a cold takes much longer to clear up for someone with several illnesses (comorbidities).

And why am I telling you all this?

well, around the first christmas holiday, I got this cold, and I really thought, I had stopped my sports training long enough to recover, so I went to yoga class again last Wednesday, and guess, what happened?

Here I sit, all drained, coughing my soul out, having a really nasty respiratory infection and hooray, doc said to me: "with all you have gone through due to the brain surgeries and with and all those allergies to the antibiotics I would give someone in your place, there is not really anything to do for you except telling you, you need to really rest up and do nothing else than giving your body the chance to heal that infection itself with help of homeopathics"

so lets hope, it works.
I remember in the past, when we went that route, a week after following all instructions I ended up with an antibiotic anyway.

So lay low I do, and live off of what is at home, untill my friend comes back to do the grocery shopping and all the other stuff that needs to be done.

a

A tentative start again?


we will see.

Not knowing who will read on after such aprupt and long lasting silence-

I miss so many things, and most so the naive eyes, I was seeing the world through.

Will there be trust again?
only time can tell, once more, only time.

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.