Saturday, October 09, 2010

If if looks like a duck, then it must be a duck...

I have been thinking lately.  Of course I would it is election time, and for what it is worth, I will be casting my vote for my elected officials, most of whom, because of where I live, and who I vote for will not win on November 2nd.

I watched a debate Wednesday night, with the 3 gentleman running for the open Senate seat here in Florida.  They are Charlie Crist, our current Governor. Marco Rubio, I believe he is currently the speaker of the house in the State Legislature in Florida.  Not sure what part of the state he is from.  Lastly, and the person I will vote for is Kendrick Meek, currently a Congressman, a Federal Congressman in Florida.  Now Crist is a newly turned Independent, used to be a conservative Republican, or so he said he was..., Rubio, is a Conservative Republican/Teabagger, and Mr. Meek is a Democrat.  Has always been a Democrat.

There was a lot of talk about Seniors, and taking away Social Security, and privatization, and so on...  And phrases like pulling the rug out from under, going back on a promise, so on and so forth.

Well as you are probably aware, I have a brain injury, or a condition called an Angioma, or Cerebral Cavernous Malformation, and I am lovingly considered a "Stemmie" ( I love that!) because these little clusters of blood vessels can be anywhere on your brain.  I am the proud owner of three. One on my brain stem (hence the name Stemmie) and two small ones on my cerebellum, which are supposed to be inactive... That means they are small, not doing anything right now.  The one on my brain stem however has grown from 6mm to 15 mm since 2006.

Now I have known of the one on my brain stem since 1995.  Found it by accident, and conveniently stuck my head in the sand, mainly because there wasn't anything else I could do, since the medical professionals around pretty much did the same.  Not sure if that is because they didn't know what else to do, or... I didn't seem to offer any more information.  Personally I don't think it was the latter.  I have since found out that I should not be taking any aspirin products, since that could make these things ooze or bleed.

Well anyway... water under the bridge so to speak.  In 2005 it gave me trouble, and then in about 3 months it was better, and I went back to work.  Then in late in 2007 it started acting up, and my Doctor at the time suggested anti-depressants.  I declined and told him that wasn't my problem, and made arrangements at work, and continued to work until June of this year.  June 2010, I decided that it was getting too hard to drive, concentrate, unsuccessfully trying to maintain a 100% productivity level at work, while being told that I was paid 25% too much, and I don't even want to discuss the egos that I had to deal with...  And on top of that I live in a house that is over 2000 square feet, I have my 86 year old Mother, and my Husband, that is 3 years post a debilitating stroke, all, everyone depends on me... 

So my GP ordered another MRI, and that is when I found out that this "thing" in my head more than doubled in size.

Now this is my dilemma...It is my understanding that I can't collect my pension from work on a disability, because I am not technically disabled.  I am not sure who it is exactly made that determination.  But that is the case.  This was further proven when I tried calling some Attorneys to see if they could direct me, and I was told that I was lucky to still have a job.  Now mind you that was not the information I asked for, nor was it given graciously, and that was the Florida Bar Association.

See based on the chatter from the debate, and people I talk to, family and friends, it seems that I guess I am not doing my part in the economy if I am not working.  I am not paying taxes, I am not paying FICA, etc.  It would seem to me that I am just wanting to (not yet, but wanting to) sponge off the system, the system being society.  Can't means Won't and all that kind of rubbish.  The bottom line is my vision goes double, especially when I have to look from one area to another, scan, move.  My typing is labored, since I often hit the wrong keys, mainly because I don't look at the keyboard, and find that me fingers are often not on the 'home" keys or that I tend to over reach for letters.  I do manage to care for my house, perhaps one room at a time, since too much activity tires me out tremendously.  For instance, having a doctors appointment early in the day, say 9:00, tires me out to where I need a couple of hours of a nap.  I am here to tell you, I never, ever took naps.

However, if you look at me, other than I tend to squint, or close one eye, you wouldn't thingk anything was wrong with me.  Oh and to add to that I asked my Neurosurgeon (because he told me I couldn't be  considered disabled) if there were any tests to determine my visual disability, he said no.

So I guess if I am not laid up in a bed, have the use of my limbs, albeit, limited.  I look normal than I must be normal.  Well I am here to tell you that I am not normal... I can't see, I can't safely drive, I constantly have to work at focusing my eyes, and that tires me out, which causes me to work much slower.  I am 52 years old.  My patience level is no where close to where it was.  I feel incapable of doing what I once did.

Now add to this that this Angioma is a ticking time bomb.  At anytime, for any reason, it could turn me into a drooling, imbecile.  Anytime, with out warning, really.  It could happen in my sleep, like the Olympic Sprinter Florence Griffith Joyner.  Or, I might be struck down by something else.

But there is one thing for sure... I can go out to work, and do my part for society..., no matter what it means...  Just like I have been doing for the past 45 years.  Everyday, with no more than 8 weeks break... in 45 years.  45 years I have been paying into the system, to help support those that have done their part, or couldn't do their part anymore.

If if looks like a duck...then it must be a duck... 

2 comments:

van der Wilt said...

Hi Heidi,

I can totally relate with your article. I had a brain stem bleed in January, and have suffered from the same neurological deficits you describe. Many people have a hard time understanding that something is wrong with me, because I look normal, just as I did before the bleed. I tell people that for some reason 7 of my 8 batteries don't get charged up, so I can start something, but then after an hour I am exhausted and can't function without getting headaches and mental fatigue.

I am on disability right now, and my neurologist and doctor have been very supportive thus far.

I have learned a lot over the past 8 months from the Angioma Alliance web site. They have a forum and a blog and an amazing website. For any readers interesting in learning more about this amazing disorder visit their site here:

http://www.angiomacommunity.org/

Just to let you know....It took me 27 minutes to write this reflection. If it was not for my spell checker showing me all my errors, you would think I had just immigrated from some country where English is not a well known language, but I happen to live in Canada.

But remember the ugly duckling turned out to be a beautiful swan...

Heidi said...

Hi van der Wilt,

Thank you for taking the time to send me a comment, and the kind words. I know how hard it is, and I appreciate the work.

I am a member on the Angioma Alliance, and my name is HeidiRC if you ever see something from me.

Hopefully everything will work out with my job...although I am not holding my breath.

There is another blog "Girl with a Pearl Size Angioma" that is also very good. I have tagged her as a favorite.

Good luck to you...I hope things get better for you, and stay that way... and Thanks Again for taking the time to write a comment...