Lions and Tigers and Bears...Oh my

Remember I wrote a poem called "A Thousand Goodbyes" a while back. Well, I submitted it to a poetry contest and I would be grateful, if you could vote on it.
Rate my poem
Thank you! :-)

I have not been posting much again, mainly due to the fact, that I am really not well. Painkillers stopped working (again) so (quite obviously) the pain was/is getting worse. My doc prescribed straight up Morphine now...
As you might know, I am actually quite against strong painkillers like that so I only take it when all else fails and I can't cope without anymore.
Why? Well, just look at the list of side effects:

• shallow breathing, slow heartbeat;

• seizure (convulsions);

• cold, clammy skin;

• confusion;

• severe weakness or dizziness; or

• feeling light-headed, fainting.

• constipation;

• warmth, tingling, or redness under your skin;

• nausea, vomiting, stomach pain, diarrhea, loss of appetite;

• dizziness, headache, anxiety;

• memory problems; or

• sleep problems (insomnia).

I have most of those anyways, so taking medication that will cause or possibly increase them, does not bear great prospects for me!
Oh well, let's see how this all progresses.
I need to go back into hospital fairly soon because they might have to replace the shunt, as it is not working anymore. I wish there was an easier way to do all this. I really don't fancy having my head shaved, again! I know it sounds so trivial in comparison, since it is just hair, but I would really like to keep it!
Running around with a shaved head makes it so obvious to everyone. People look at you and think "poor woman". They treat you differently and even though, ten years ago, I would have given anything to have a visible sign of my illness, I really don't want and need that anymore.
Why did I want to have physical, visible evidence of my illness, you wonder?
I wasn't diagnosed with pseudotumor until 2001. Until then, I knew something was wrong but no one else believed me. I was considered a hypochondriac, a malingerer and since only very specific tests reveal the pseudotumor (tests, that unless he know what you are looking for no doctor would perform) I had no proof. As a result, I began to question my own sanity.
So when the ER (A&E) doc, who treated me after a black out said that he might have an idea what it was and that he needed to run some tests, I was so relieved.
Strange isn't it? When someone tells you that you are very ill , and it is an alleviation rather than "bad news".
So as I said, back then it would have been, lets say "useful" to have something that showed my illness but now I find it more of a burden.
Oh and I hate wigs, so that is sort of out of the question. Guess I have to revert to a bandanna or something like that. Just have to find one that I like - I am rather picky with those.
And then I have to keep my kids from borrowing them all the time... :-)

So I guess it is off to see the wizard, soon.
Wonder whether he could give me a new body...?

How am I? Really?

Someone sent me an email today asking me
"How are you? I mean, how are you really?"
It made me think...

How am I, really?

I am struggling with my illness, it is playing havoc with my body.
There is something new wrong about every five minutes. At least it feels like that.
The only drugs that help me with the pain are so strong that I feel all "mushy" and "out of it" when I take them. So I don't take them unless I really can't stand it anymore.
The pain on the other hand makes me aggressive, short tempered and I am always tired.
I don't sleep well and of course, it feels like on big "merry go round" without the merry!

My kids are doing their job and driving me crazy.
They argue... Boy, do they argue!
Watching them sometimes makes you forget they are little girls. When you sort of glance at them out of the corner of your eye while they are going at it you get the impression there are two little Banshees screaming their heads of and tearing each others hair out...
And by the sound of their waling at times, it really does sound like one or the other is about to die...

I do love them dearly!

My work or rather non work situation really frustrates me. Every time I seem to get on my feet with it, my health or something else thwarts my plans.

I need money!
I need work!
I need a break!
I need Simon!
I need a secretary to sort all my paperwork.
I need a nice person that comes along and says "Oh, you want to properly furnish your school? Here is the money and the workers and do you need anything else?"!
I need this stupid illness to magically disappear!
I want my friends right here with me and not halfway across the world!
I need one day, just one day without pain!

So how am I? Well, you figure it out...

13 Part Deux

Thirteen Things about Jeannine Thirteen things I hate about my Pseudotumor Cerebri! 1…. I hate that I have it! 2…. That for the 10 years prior to my being diagnosed in 2001, no one believed me when I said that something was wrong 3…. The constant headaches for the last 16 years 4…. The memory loss it causes 5…. The memory loss it causes... just kidding - The not knowing if today/tomorrow/the day after that is a good day or a bad day 6…. The fact that I might have unknowingly passed it on to my daughters 7…. That I might loose my eyesight and when I say might it is because I am clinging on to the hope that I wont 8…. That I haven't slept well, without waking up several times a night because of the pain, for I don't know how long 9…. That I have to take medication which is ruining my body (liver and kidney damage a. s. o.) 10…. The lethargy it sometimes causes 11…. That it, to some extend, dictates how I live my life 12…. That it doesn't only affect me but also my loved ones 13…. That there is no cure Links to other Thursday Thirteens! 1. Claire 2. Coleen 3. Allie 4. Christie 5. GreenEyedGirl 6. Maryanne

View More Thursday Thirteen Participants

In Limbo

Some detail work I did a couple of months back.

Today was an inbetween day. Not good but not bad either. We got up earlier than I would have liked and tidied up, did the washing, put all the recycling rubbish into the car to be gotten rid of on our way to my friends house. I actually felt quite well during all that time. We had lunch (rice with fresh tomatoe and pizza flavoured Tofu) and then left. My friend had made me a cup of cappucion (as per my instruction) which I had in record time. I then left the kids at her house and dashed of to work (still doing make-up for the theater production of "The Hobbit"). Things started to go down hill from there. Now because I have an assistent doing the make-up with me we Today was an "in between" day. Not good but not bad either. We got up earlier than I would have liked and tidied up, did the washing, put all the recycling rubbish into the car to be gotten rid of on our way to my friends house. I actually felt quite well during all that time. We had lunch (rice with fresh tomatoes and pizza flavored Tofu) and then left. My friend had made me a cup of cappuccino (as per my instruction) which I had in record time. I then left the kids at her house and dashed of to work (still doing make-up for the theater production of "The Hobbit"). Things started to go down hill from there. Now because I have an assistant doing the make-up with me we had said that two hours should be more than enough for the dwarfest, Beorn and Bilbo. But... she called in sick. So I had 12 people to do in two hours and two of them take about 25 minutes on their own, each!
But, I can handle stress! At least as long as it is required of me. I am very good at keeping myself together when is needed but as soon as the pressure has gone I start to shut down. I then usually need a cool down period. On the way back to my friends house I almost ran over a roller balder. It was twilight and the stupid person was in the middle of the road, wearing gray and no light or reflectors!!!
Got to my friends who had made dinner (rice with sweet and sour chicken).
After dinner I sorted out her computer, got rid of all the junk and unused pro grammes and files and set up an email account for her (she is a bit of a technophobe). So by the time we got home it was 9.30 pm. Kids went straight to bed and I talked to Simon on the phone, talked to my mum, checked my emails and now I am in so much pain I don't think I can go to sleep. I am also having real problems with my left hand so I am typing this thing one handed (not fun!). I think I am gonna have to take a painkiller as I have to work again tomorrow and I really need some rest. Bummer...
Oh but something good has happened yesterday.
My older one has qualified for the German Nationals in Irish Dancing.
Now all I have to do is find the money to send her there...!
Also I am now in negotiations with an Artist Agency. They want to sign me!!!! :-)

My Simon - My Henry

Yesterday and today weren't the greatest of days health wise.
So I stayed in most of the time, slept, watched some movies and read a little.
Today I watched "50 First Dates" with Adam Sandler and Drew Barrymore.
For those of you who don't know what it is about:
Lucy had an accident and lost her ability to retain short term memories.
To keep her from the ugly truth, her father and brother and some family friends go through great lengths to make it apear it is the day after the accident, she can't remember, over and over and over again.
Henry who is usually a real Player falls for her and makes her fall in love him anew, every day!
I won't say anymore, because if you haven't seen it, watch it! It is really worth it!
Seeing this movie made me think about Simon. And then it struck me!

He is my Henry!

My memory loss problems aren't that severe as they are with Lucy.
They usually entail forgetting to pick up the thing I didn't think necessary to put on the list, forgetting some conversations I had (or parts of them) or not remembering things I need to do.
To most people I just seem clumsy or careless.
It always depends on my day. You see the pressure in my brain affects different parts at different times.
That is why sometimes my speech is impaired or my motoric functions, my vision or my balance and quite often my memory.
Simon copes with it.
Yes, he has the odd moments where he would rather strangle me but mainly he stays calm and sorts out the mess.
Another problem we have to deal with are my mood swings. I get very aggressive when stressed, I become overly depressive for apparently no reason, which is all (or in part at least) caused by the Pseudotumor Cerebri (in the future this will be shortened to PTC because I am too lazy to keep writing it out...).
Again, Simon copes with it! He sticks around where others have upped and ran.
He even goes so far as to pick the fight he knows is coming to get it out of the way. After, he comes up and asks "Do you feel better for that?"
When I am having a bad day, I am a real bitch (please excuse my French, but there is no other word for it). He puts up with it. Well not all of it... he does argue back a lot :-)
For Christmas he had a little photo book printed for me (although I did get it early because he thought I needed a cheerer upper). In it where his memories of his life with me! The trips we
we took, things about the kids, our house, the area we lived in and about my work.
On every page there is a little note. Some make me laugh, some make me well up.
He did this for me...!
On his birthday, after not having seen each other for 5 months, he suddenly stood there at my school, in the middle of me giving my class!
He flies over almost every month for a long weekend even though I left England.
We could have stayed there, together but I, knowing myself as I do, know that I would have pushed him away. It might not have been easy, because he would have fought me, but I have had a lifetime of pushing people away. I know how to do it! And I know, I would have succeeded.
Most people don't understand how leaving him saved our relationship, but I know it did.
And you know what:
Simon never says "I wish you hadn't left", he says "I wish we had never moved to England".
He is trying to make me feel better about the fact we are not together, even though he suffers terribly from not being able to see us everyday.
On the other hand, he would have never been able to work the amount of hours he is doing and gotten to a position in the company which in the hopefully not too distant future will allow him to work from home, if we had stayed there. "And if home is Germany," his boss said, "then that is OK with me!"
Simon is the kind of guy that makes me coffee, even though he hates the smell.
When he proposed to me he had shaved for the first time in thirteen years because I don't like beards!
He learned how to do Make-up (from me) so he would know what to do if I needed help on a project.
He loves my children as if they were his own!
He knows, that I am not likely to get much better any time soon. He know there is a very good chance things will get worse. I gave him every opportunity to bail out but he stayed right by my side (though temporarily not in person).
Heck, he has asked to marry me, that should speak for itself!
Simon does or says something every day, that makes me fall in love with him that little bit more.

Simon, you are my world.
I love you!


Oh and I did make that phone call to VW only to be told that I needed to put it in writing....
Go figures.

A Pain in the Head...

I am having a very bad day health wise. I woke up with a headache but in the course of the day it became almost unbearable. I get those a lot (due to my illness) but as bad as today they haven't been in a long time. They reset my shunt about a month ago but things have been getting progressively worse, not better.

Here an explanation of what it actually is I have:

What is Pseudotumor Cerebri?
Pseudotumor cerebri literally means "false brain tumor." It is likely due to high pressure caused by the buildup or poor absorption of cerebrospinal fluid in the subarachnoid space surrounding the brain. The disorder is most common in women between the ages of 20 and 50. Symptoms of pseudotumor cerebri, which include headache, nausea, vomiting, and pulsating intracranial noises, closely mimic symptoms of brain tumors.

As said I also have a complex problem with my coagulation (blood clotting) which can cause small blockages in my brain, which in return add to the problem of the increased pressure.
(Gene 20210A, low protein S and Factor VIIc if anyone wants to look it up).

I have taken some pain killers about an hour ago and finally the headache is starting to ease up.
Problem with me and painkillers is, that most of them have stopped working. I have built up sort of an immunity against most. The only thing that helps is the really strong stuff so understandably I am rather hesitant to take them. It is a sort of last resort.
Normally I try to manage the headaches alternatively e.g. homeopathically and through sleep and concentration. But sometimes that just doesn't work.
So I am keeping this post short and hopefully will be back with news of the first day back to school.

So I have decided to blog...

As you are quite able to see: I am new to this!
I am not sure whether my ranting and raving is going to be of any interest to you, nor do I know if I am actually going to be able to rant and rave on a regular enough basis to keep your interest.
What to write? I suppose something about me would be in order? I am 29 years old and a mother of two. My daughters are 9 and 10 (so I was just 18 when I had my first child). Their father has been absent since shortly after my second daughter was born, but that is a story for another day.
I have a fiancee who lives and works in England. We see each other about once a month for a long Weekend but that is yet another long story for another day.
I am a self employed Hair and Make-up Artist and I have a school for Make-up Artists in a nearby town. Am I good? Yes I am! It is just a matter of convincing the rest of the world but mainly the Film and Fashion Industry that I am!
This is some of what I do:
My working life has not been the easiest of late.
It seems that every time things are looking up and actually going somewhere my health is playing havoc and decides that I am "destined to fail".
I suppose this is over-exaggerated a tad, but it feels that way.
In 2001 I was (finally) diagnosed with an illness called Pseudotumor Cerebri which is an overproduction of spinal fluid in my head. It causes much the same symptoms as a brain tumor would only it is not an actual mass in my brain but rather accumulated fluid. It has been making my life... rather difficult to say the least. I suffer from a number of symptoms like constant headaches, loss of motor control over my hands or legs, blurred or tunnel vision, balance problems and much more. On top of all that I have a number of other medical problems. In all, from a physical side of things I am sure that if there was such a thing as a body MOT I am sure they would cart me of to the next junk yard!
I had brain surgery twice in the last couple of years, they have but a shunt into my head (sort of a pressure valve) and things have been getting better and then worse and better again and then they went worse again. I am in and out of hospital on a regular basis and the Doctors are, it feels at least, at the end of their wits.
But, and this is the very big and very important BUT in my life, I am NOT going to let IT get me down!!!
I raise my children the best I can (although they are driving me crazy, slowly), I do my job if and when I can, I have great friends (some of which you will be introduced to along the line) I write and I paint in the little time that isn't spent on the necessities of life, in short:
I live!
It is late, I am going to try and get some sleep.
I bid you all a very fond farewell.