So this is the deal...

... I was taken off work by my doctor until January 3rd.  The paper work ("official" paperwork) was sent to the mother ship in September.  I received word back from the mother ship, that they weren't recognizing the January 3rd date, and they wanted to re-assess the disability on 11-19-10 or there about...

Now, I am not sure what that means.   Apparently she (mother ship technician) didn't either, or maybe she didn't know how to express herself, or maybe she wasn't instructed how to express the views of the company, which may not or may not be the same as hers, but her own opinions and feeling are slowly, very slowly, being sucked out of her for a false feeling of security and safe keeping.

So now, I am 30 days away from knowing... or... not knowing what my fate will be.  I am also approximately 30 days from (in the other direction) knowing that my fate is in question.  So that means... for 60 days, I will be in limbo, not knowing, what will happen to me.

Let's not even talk about what is wrong with me... Yea...let's talk about what is wrong with me... That I know.  I know all the stuff that is not good... It is the good stuff I don't know... How depressing is that?

I know that I have a cluster of blood vessels on my brain stem...I know that I have two more clusters located in other parts of my brain, but no one ever went into detail with those.  I think that has to do with the wait and see approach.  See... no knows what causes these clusters to grow, or ooze (what you and I may call bleed. Since it is blood, and the blood dissipates, but leave hemisderin or iron, which along with blood is an irritant to brain tissue), and since they don't create a problem until they do...well, what we don't know won't hurt us... ahaaaa, or will it....?

But let's go with it won't or it isn't hurting us.  I still have this one cluster or (not so commonly known) ANGIOMA.  (By the way, spell check doesn't recognize it, but that is ok... Most doctors run away from it too.  Hence the wait and see approach.)  Now, let me say in all honesty... I don't mind the wait and see approach.  I am 52 (don't say that isn't old, that depends on your perspective...), I don't have any children, and quite honestly, this world really does stink... as it is today anyway, but the Yankees are behind in the ALCS... that is a positive!  In all seriousness, I have to fight for everything, I mean fight and worry.  I hit closed doors more than open ones.  Now that could change any day... but for arguments sake speaking for today, it stinks.

Back to the Angioma... this lesion as it is referred to, has grown in the last 15 years more than 2.5 times it's size.  I don't know if it plans on stopping or not.  It has bled (or oozed) a few times, which can cause anywhere from a headache to numbness to dizziness,  possibly paralysis, or coma.  These are the facts that I know.  What I don't know is when this could happen, or what causes it to happen.

Now... let's play the devils advocate... do any of us really know?  Do any of us really know what will be our demise.  No, and given the chance to find out... very, very few of us would want to know.  Most of us want to go on through life, doing our thing, and be hit between the eyes with it at some point.  However, most of us want the opportunity to avoid that fate...with diet, exercise,  avoiding bad habits like smoking, sky diving... (just kidding I just threw that in to see if you were paying attention....I am not putting a bad light on sky diving...)  However... my fellow stemmies and I don't have a clue.  We are flying by the seat of our pants so to speak.  In fact I have been since 1995.  Today, I am saying, ENOUGH.  Today I am saying, I may know that I theoretically have a ticking time bomb in my head, and not knowing when it will or how it will go off, or what I will be doing... or what  I will do to make it happen, has gone on long enough.  I can't do it all anymore.   Quite honestly, I don't want to.  Don't take this the wrong way... I am not looking to end it all.. I just want some help.

The dizziness I experience on a daily basis, the intermittent nausea, the insecure feeling I get in public add to that the chore of getting up every morning, fighting the traffic, dealing with piss pour personalities (that is if there is a personality at all), the aggravation of being told I just am not good enough, and then, when we are we are "rewarded" with a Hamburger, or a T-Shirt, then the daily chores associated with a family (that is right... I have no children, but I do have a family that I care for, and nurture, and worry about...!), are really a lot to handle.

What I really dread are the looks from people, the disappointed, disapproving looks.  'Poor dear, she is giving up...'  Or... 'She wants to be supported by the system... what does she think... this is Sweden?'  (If only this were Sweden...)

I know I look like everything is fine... but take my word for it... it isn't.  Most of my day it is overwhelming.  It is all consuming.  I have fought the good fight, and I am not raising a white flag... I am asking for reinforcement!