I just had to add this...

Pictured:  Linda, Michael and Chris in NY at a July 4th Barbeque

The guy on the right is Chris aka "C".  He is one dynamite baseball player.  Yesterday Lynda, our cousin in NY let us know that Big Chris and Little Chris (aka "C") heard from Flagler College.

We just heard from his Dad, and he is here in Florida, at Flagler College, trying out for their baseball team, for a scholarship.  Flagler College is in St. Augustine.  It is a great college.

Anyway, it was great to hear from him, and so nice that Chris called us.  He also heard from St. Josephs college in NY (Patchogue), they are interested in him also.  Apparently he is a hot commodity...but his family knew that all along...in more ways than just baseball.

My cousin's son also was offered an academic scholarship to St. Josephs College in Patchogue.  What a hoot!!!  I guess we come from good genes...!

Merry Christmas and Happy New Year

Hi Everyone... it was a very nice Christmas this year.  We didn't go haywire with the gifts, but each of us got something we needed/wanted.  I for one got a pair of slippers, that I love and I have lived in them since Christmas morning.

Today I go for an MRI.  I think it is to see if anything has changed since my MRI in June.  Now there are  two trains of thought on this.

1. We want to see if this thing (angioma) got any bigger.
2. We want to see if the original MRI in June was misread.

I am sure that a decision about surgery fits in here somewhere, but I am not going to have surgery.  Not yet anyway.  I have too much to worry about, and too much to take care of.  Since this is considered "elective" surgery, that means "I" am the one electing to do it.  For anyone who is interested "I" elect not to do it yet.

I was reading another blog Thankful for Every Day  and Elizabeth had surgery.  During her surgery she had a stroke, which they found out the next day.  She has had intense rehab following her surgery in Az. and a few days before Christmas, she was released to drive home to Ca.

I am very happy for her.  She has a new baby, Jack, and her husband.  Her Mom was able to cook for her, and they were able to hire someone to take care of Jack and stuff around the house.  She is happy that her Angioma is gone, and her problems as far as the angioma are gone as well.  Her Angioma was deep in her brain.  Dr. Spetzler was her her surgeon, and she is making a miraculous recovery, all considered what she has gone through.  Amazingly enough, that wasn't enough for some Dr.'s.  I guess that will never change, and is something we will be saddled with the rest of our live.

I unfortunately am older than Elizabeth, my mother is not able to help me out.  As far as our angioma's, well, an angioma is an angioma. Also, my husband is 3.5 years post a major stroke, and it wouldn't be fair to lay a lot of responsibility on him.  I think it took a year a half for her to decide on her surgery.  I only heard from Dr. Spetzler four month ago.  I think I have time...

I took some pictures for Christmas...

ET Phone Home...!

I have added some pictures of some of my kids to my blog, and my tree.

This one is of Mathie.  The wagon is because she hasn't been walking too well lately.  The blanket is on my Mom made out of all scraps.  My Dad had it in the nursing home.  It is a very heavy, warm blanket and work perfectly on those cold nights we had recently, and Mathie doesn't mind at all....

"You are not getting me off this bed...no way, no how, so don't even try!"

 Of course there  is Wesley.  George calls him an Electrolux with legs.  Mainly because of the way hi is shaped.  But he also love to pick up trash when we are walking.  He is a Jack Russell mix.  He was found when he was puppy, under a portable, and you can't tell, but some not so smart of kind person tried to cut his ears (and he has sooooommmme ears let me tell you), because he has little slits on the top of them.  His tail was docked also.  He is very affectionate, once he decides you are ok.

"Don't I look innocent... don't believe anything you hear..."

This is Mr. Lars... we love him, we love all our kids, so I guess that is misleading... but he is just special.  He especially loves his Mom, (that's me!) and he is a little Dickens.  However, that doesn't make him any less endearing to us.  This year he has decided to spend time under the tree skirt. This is one of the feral cats my sister has outside her house.  Since most of them are either lost or hit by cars, I told her one year that I would take one of the males and keep him as an indoor cat.  That  is what we did, brought him all the way back from North Carolina.  Boy, did we get a good one...
                                                                             

"O Tannenbaum, O Tannenbaum..."

This is our Christmas Tree.  It only looks like it has a lot of lights, because all of the ornaments or... the majority are glass ornaments from Germany.  Oh, and of course it has tinsel and a little bit of garland on there.  It is a real tree that we get from Costco.  This is the second year now.

Christmas tree shopping was always my job with my Dad when I was younger.  We would always go out on Christmas Eve pick out our tree, and believe you me, it was never an easy task.  My Dad loved trees, and some years we would get live trees, which he planted in the front yard.  That was in NY, and they usually did well, as did most of the trees my planted.

It was cold usually, and I was very particular.  That is if it was a cut tree.  If it was balled, my Dad had the final word.

When I learned or got up the nerve to chew the tree lot guy down in price... well, that was a red letter day for me.   The fact that the next day the trees would be worth nothing to the guy never dawned on me.  Naive...ya think?

We would come home, bring the tree in, and, get it in water and up on the stand, have dinner, and let the decorating begin.  Dad would first string the lights on the tree, then the garland and then he would retire to the couch, and tell me what spots needed ornaments.  To set the mood we would switch between German Christmas Carol (LP's) and the TV had on the Yule Log at Gracie Mansion and Christmas Carols in the back ground...  By midnight the tinsel would go on the tree.  First that was my Mom's job, then I was able to help her, and then my sister would join in...however, that is when the fighting started... I was the (or may I still am...) the perfectionist, and wanted the tinsel put on one or two strands at a time, my sister on the other had didn't have the patients for that...she wanted it on in globs...  So needless to say my parents turning into referees before the night was out.

Well, Dad is gone now, so I do all the decorating, and George will tell me where there is an empty spot, and of course supply the encouragement and compliments when it is done. 

A slight diversion from the usual...

... I have been talking about this "thing" in my head for weeks now.. as would be expected... but today I am going to talk about my new friends that I have...

For one example, Jim and his wife Kathy.  He lives here in Central Florida and he also has multiple Cavernoma's.  He had surgery this past year to remove one.  It was giving him seizures.  He was a letter carrier (what a coincidence...huh?)  He had the surgery, and his job forced him into retirement.  In a way he was lucky, because he got out of the Postal Service, and he was able to retire because he had a civil service job.  George who had a stroke, received a threatening letter from his supervisor when his FMLA expired.  They didn't offer him the option at the time.  P.S.   He did take early retirement, but that was about a year later.  And he did it because it was offered to everyone. 

But I digress.... Kathy and Jim opened a Pizzeria in Kissimmee... and let me tell you...that was the best pizza I have had since I was a little kid in NY.   I mean really good... and we had Zeppoli's, and Chicken Wings that were out of this world, and Garlic Knots.  Everything was delicious, and what was even better were the hosts.  They were warm, friendly, kind, they treated my Mom like she was a long lost relative.  They were really great.

Jim and I and Kathy and George commiserated over the endless search for Doctors.  The questions, the answers, or so called answers.   I found that I was not alone.  Not that I didn't already know that.  If there is one thing you learn it is that your experiences, frustrations, and delights are the same.  We get the same answers, and or the same lack of answers no matter where we go.

I wish that their shop was closer to my house...(currently it is a 31 mile drive to Kissimmee from Oveido/Winter Springs.)  But I will make it again, if not only for the Pizza, but also to see how they are doing.  They gave me the name of their doctor, who I plan on calling in the next month or so.

Other friends I have found are not as close as 31 miles.  They are farther, but never further than my computer upstairs.  And they have blogs... "Girl with a Pearl Size Cavernous Angioma" is a 20 something that also has an Angioma on her brain stem.  She nick named us "stemmies"  (great name).  She is amazing... she always reads my blog, always replies with something encouraging to say, or just to let you know that she is listening...  And besides that she is the neatest person.  She is an artist, and she loves vintage things, and she isn't hung up with the material things in life.  For instance, she bought a p-coat at a garage sale, only to discover that it is a p-coat from the German Navy.  Military issue p-coat.  But there is a button missing.  Well not for long.  My friend from Germany was able to get that button for her.  The exact same button, and he will be bring it with him this weekend when he comes to visit.  So by the new year, she will have the button she need for her coat.  I don't know about you, but I think it is sooooo cool that she has the coat, and posted about it in her blog and that because of our Angioma, we connected, and she will have her coat with all the buttons...!  Isn't that cool...?

My next freinds are even farther.  "Life after BC", and this is Tarja, and she is all the way from Sweden.  Also someone with an Angioma...and also a super nice lady.  She always has the kindest things to say, her responses to my blogs and my posts on Facebook are always the best.  I just can't say enough nice things about her.  And again there is the common thread... we all have the same frustrations and fears.

I have more friends from Sweden.  However not with Blogs, but they are my friends on Facebook.  Michelle, she raises Basenjis...

So there it is.   Everyday I am compelled to race up stairs and see what is new with my new friends.  Maybe one day we will all meet.  Maybe not... but I will still race upstairs to my computer, where we can all get together.

Oh... and I forgot to say where I ultimately met everyone... it was on "Angioma Alliance"  No matter what you say, or what you question is, there is always someone out there who will have an answer for you, or an option. 

Chances are, if you have an Angioma and you are reading this... you already know about the website.  If by chance you don't... well it is a great resource.  And if you are reading this and you don't have an Angioma... read it anyway, because then you might understand what we are talking about or going through...

Either way...thanks for reading...

  

Well it is Tuesday... and the appointment came and went...

... and the doctor said he thinks I need to do something about the cavernoma.  He suggested Gamma Knife Surgery... that is his thing, and I am totally against that.  Only because, ultimately you end up doing regular surgery anyway... and usually because things got worse than they were before the surgery.

What he said was, since I am stable, and not in a good way, but worse than I was a year ago, and the fact that I am only 52, this thing could stay the way it is for 10 years, or I could take a bad turn in a year. 

Now mind you, this I knew already, I have wrestled with this already, in depth.  That isn't fixing the problem at hand.  However, the doctor did say, he couldn't speak for me, since he isn't experiencing the neurological deficits that I am.

He explained the Gamma Knife Surgery would only take me out of commission for one day, and I would be back at work the next day.  Where as the surgery (Craniotomy), would be 2-3 months recuperation, and then I could be better than before.  Now that is not what Dr. Spetzler's office said.  He said I might have increased double vision afterward.  Let me also say that if I had the surgery, I would want Dr. Spetzler to do it.

What I also explained to the Dr., was, that I have my 86 year old mother living with me, and my husband.  My husband had a stroke 3 years ago, and where he might be totally capable of taking care of himself, he could not take care of my Mom, and quite honestly, and I told him this also, he would not be able to care for himself, my Mom, the house, all the animals, and me for 3 months.  And this is if everything went fine and as planned.

God I hate this...I know I am a control freak, but, let me add, a lot of the time it is because I have had to be, and that is something to take into consideration before people cast stones.

So he took me off for another 3 months to make a decision.  No pressure... Yea Right!

What kills me is this... And let me add, I am not a lazy person by any stretch of the imagination.  I am pretty ambitious.  I have been off work since July.  Since then I have had to worry about the proper documentation getting to the right person, and that they will respond in the right amount of time, and actively work to get this information to the proper individuals approximately 8 times.  That means that out of the 6 months I have been out of work, I haven't had one full month when I haven't had to worry that something wasn't going to be addressed in a timely fashion.  And why would I worry you ask... because if it wasn't done, ultimately the blame would come back to me, saying that it was my responsibility to make sure it got done.  Just one example of why I am considered a control freak.  The way I look at it, I really don't have a choice.

But, I also look at it as...it is pretty obvious what the situation is... and there aren't any screw ups, or wishful thinking, or Freudian mistakes that will make it otherwise.

So now, I have to have one set of papers sent to one place, another set of papers sent to another place, and all the sets of papers will say the same thing that they said six months ago, and the other four times they were sent out.  And each set of papers that are sent or received or read are time sensitive, both for when they are sent and when they are responded to. Not to sound like a broken record, but...they all say the same thing!!!

Anyway... that is the story in a nutshell.  Same old same old, if you read back on my past posts.  Quite honestly, it is boring even to me...  Yup I need a vacation, a long pampering, relaxing, care free vacation.  What are the chances of that happening...?

Well Tuesday is my Neurosurgeon's appointment...

...and I have been wrestling with the idea of what I was going to do. 

As always happens, when I am home I feel Ok, not great, not totally confident in myself, but Ok.  I went to the mall today with my Mom and a friend to do some Christmas shopping.  I was a mess in Penney's.  I was uneasy, I was very timid, because I couldn't stand the people rushing around.  Anxiety was an understatement.  I did ok, but I was anxious to get home.

This is similar to how I felt last week, when some friends asked that we join them in a tree lighting ceremony in the next town.  It was crowded, and I needed to hold on to someone.  I was embarrassed, because people who were very able (which I used to be) had to hold my hand so that I didn't feel uneasy.

I don't think this is how someone should feel at my age, in public.  I forget that I do feel that way, because I don't put myself in those situations often.  I go to the supermarket, but George goes with me, and if I need him to hold on to, he is always there. 

I am not sure it will matter much how I feel, because it hasn't in the past, but I am going to stand by my conviction... 

I will let you know how it goes.

Want to see some pictures...

This is the beginning of our Thanksgiving dinner.

This is my sister waiting for dinner to be served!

This is the Christmas card picture this year!

Had to get this off my chest...

I am also on the wait and see approach, and that is fine with me.

My problem isn't with myself. I am fine with what ever happens to me, as long as I know I did what ever I could, when I could.

I have said what my wishes are... but that doesn't mean that I am willing to let things happens as they may. I guess I am too much of a fighter to allow just what ever to go down. I want to make the best of my life right now. At my age, and my situation, it isn't like I am going to start planning for my retirement 30 or 40 years down the road.

My Father had 3 strokes, my Husband had a stroke. So in essence they are and were brain injured. However that is not recognized. They not only act or acted different, they think different, they comprehend different. They are not the same as they were. But they are and were treated the same, and the expectations of them are and were the same.

I was asked to join a support group for caretakers of stroke victims while my Dad was in the hospital the last time... because he would only do things for me. Unbeknown to me, that was marked in his chart in the hospital. I think that is because I fought for him every single step of the way. I didn't treat him like an invalid, but I took his disabilities into consideration when I saw how people treated him. Those people had a large affect on the way he responded to their care. But you know what, it really didn't make a difference in the long run, because I had to go back to Florida to work, 500 miles away in a week. So after I left, what I did for him in the hospital was not done anymore, and he fell by the wayside.

For my husband I was with him every day, and night when I could. I fought for him, despite what others around me wanted me to do. I made it clear I wasn't going anywhere.

We need to be more sensitive to people in general. Think more of what they are dealing with in life, and maybe think about what their life is like, instead of expecting it to be what it isn't.

That is my problem with Angioma's and people with Angiomas. Heck I have a problem that the term isn't even recognized. These are real problems, and with that comes real problems that need to be addressed.

I am grateful for my friends that I have on the internet. I just wish that everyone with brain injury had the compassion and understanding of the community. Unfortunately, unless we where a sign that says something to that effect, most people just don't want to take the time to have patience, or have any sense of understanding what other around them are going through.  However even then I don't think it would make a difference, because the truth is people just don't have the compassion for their fellow human being that they should.

I wish I could change the world, just a little...

Let me Explain...

I don't want surgery at this point.  I spoke to Dr. Spetzler's office and they said that it will not make things better, could make them a little bit worse.  That against, it may never get any worse... or it could get a little bit worse... A lot "it could..."'s involved here.

I know I am not old, but then that is all relative.  Tell a person that has issues to deal with on a daily basis, that effect their daily life, that they aren't old... these issues are similar to issues a person much older has to deal with.  Then tell a person at 85 who is vibrant, active, driving, doing things they like to do that they are old, and need to stay home and take it easy.

The point is that everyone is different, and need to be addressed individually.

Society wants to lump us all together, and say that this is how you should feel.  Regardless what your differences are. Regardless what you have had to endure throughout your life.  And at the same time they don't want to give us a hand to help us to be more alike.  That takes too much work and effort on the part of the "whole"

I am not really cranky, but at time like this when you feel like you have your back against the wall, and you can't hold up the wall anymore, something has to give... not sure what that is yet... 

hello again...

Hope everyone had a good Thanksgiving...

Mine was nice.  My sister was here, her daughter, and then my Mom and George.  It was really nice having everyone here.  I cooked, and served and cleaned up, and when I needed help, I called in my sisters assistance...

So the holiday is over, I got the extension of my disability to January 3rd.  I have an appointment with the Neurosurgeon on the 14th.  Now, let me say this, and someone has tried to explain this to me.. but I still don't get it.  Nobody locally wants to do surgery... right?  That includes me by the way.  I have this thing in my head on my brainstem, they call it a tumor, although technically it isn't a tumor, it is a "raspberry" type of growth, that the Neurosurgeon doesn't want to remove ... and it is causing me some "problems", which are neurological in nature... So then explain to me if this thing that isn't being operated on, is causing neurological problems, and it has been said... "I am surprised you aren't having more problems than you are?" This would indicate to me that I "should" be having some pretty bad issues with my balance and vision. 

They are telling me that the best they can do is hope that I have a long life with struggles.  Ok, $135.00 dolla, see ya around....  Oh... forms, you want me to say you can't drive, or can't manage all of your responsibilities, and issues in life... sorry, I can't say that...!

Also, I was through this in 2005.  Same thing.. but it got better.  At that time this "raspberry" was 6 mm... it is 15 mm now.  In 2005, when I got better... I went back to work.  I asked to go back to work...  I knew that I could drive without any problems, and I could do my job, and I was anxious to get back to work. 

I don't get it... I really don't get it...  Maybe I should be seeing a shrink, instead of a Neurosurgeon... Because this one really has me stumped.

I am not lazy, I have been working since I was 18.  That is 44 years, for those who don't want to do the math.  Full time working...No children, so none of that maternity leave, and time off to be a Mom.  I have only had maybe 4 or 5 employers.  In that amount of time, even I am impressed.  I take care of my 86 year old Mother.  I take care of my husband... I tried to take care of my Mom and Dad's affairs, when my Dad became very ill, just short of 10 years.  Long distance.  Which means I had to pay someone to do what needed to be done that I couldn't do myself.  I now have this house over 2000 square feet, 3.5 bathrooms to keep clean... one of those bathrooms is my mothers.  3 dogs, one being diabetic, this one belongs to my Mother, needs insulin shots twice a day.  Good Meals, well rounded meals.  Breakfast, Lunch, Dinner.

What I haven't mentioned was that my boss told me this past March that I get paid about 25% too much money, and at any time my employer could say... you have a choice, take a pay cut and keep your job, or don't take the pay cut, get about 6 months of severance, and then you are on your own. Or... You are not productive enough in you position, What was that.. you have a neurological condition, well, that is just an excuse....You are the weakest link... GOODBYE!

And now all of a sudden, at this point in my life, when I need some help I am being told, sorry, you really don't have anything wrong with you...  Not sure what I could do to help.  Well, yea... I guess there is "SOMETHING" wrong with you... but it isn't bad enough.  Wait till it gets worse.. then we will deal with it.  No sense in being proactive.  Now... on to extending tax cuts for the wealthiest people in the country... You know we are in bad financial times... and this is the wrong time to make those people feel uneasy, or in jeopardy!!!! 

What a week it has been!!!

Driving evaluation was Tuesday, what a week... Well, first let me say that the driving evaluation is the same one that SENIOR CITIZENS go through.  I am 52. 

That being said, the road test was about 30 minutes long.  It was in a Hyundai Accent.  It was automatic transmission, good, since that is what my car is, automatic that is.  I drive a 2008 Volkswagen Rabbit.  Although, I could have driven a stick.  (Nothing like tooting your own horn!) 

As far as how I did... well, they said I was aggressive, and I am not making excuses... but I was aggressive on my bicycle too.  Personally I think I was preoccupied.  Does that make sense?  I was trying to do my best.. really was.  Anyway, on two occasions, I traveled too close to the left side of the road.  Which is funny because when I drove with George, he said I hugged the right side of the road.  I don't think it was over compensation, I think it was just that my sense of center was off, because the evaluator also stated that I rode on the line also, or straddled the center line.  The inside part of the test, at the computer, well there were 6 parts.  4 of them I came in as average for my age group, and 2 of them I came in as below average.  Most of these were testing judgment and reaction times. 

Now, all that equals to they passed me.  Now this information is not shared with the state licensing department, it is up to my doctor to take these test results and interpret them, with my situation, and contact the state capitol or not.

My husband made a very interesting observation.  This eval, both road test and simulator, were the only things I did that day... I slept in, no stress or rushing (other than my aggressiveness...lol), and I was trying to do my best... now couple all that with working, keeping my house, caring for my family, traffic, etc... well needless to say I don't think I would do that well.  I also want to add, I was exhausted after wards.

Now, it is Veteran's day, and I think my doctor's office is closed... and actually I think that is ok...  I think that business should close for more holidays.  Hopefully I will hear something by next week.  Especially since my last authorized day off is the 19th.  That is another story altogether...

So really, I really am not at a different point than I was before the evaluation.   I am convinced this is going to be a big deal, and will take a long time to work out.

I can't see, my eyes do what they want.  I have to work very hard for them to focus on one thing, and it really does exhaust me. 

Oh, and Schatzie, (Mom's dog) well, she has diabetes.  It is apparently pretty bad.  She has ketones in her urine, and her blood glucose is staying consistently at 400 or higher.  So they have her on fluids, and are monitoring her blood sugar, and her urine, and she is on regular insulin, and if all goes well, no seizures and no problems, she will be home tomorrow, and I will be giving her long acting insulin twice a day. 

However my research on ketones in her urine, which almost always amounts to ketoacidosis.  Now this isn't good, but, we will hope that it gets better. 

So as you can see, between Mathie (my dog) and the fact that she is getting old, and doesn't want to be away from my side.  Mom, George, this deal with my health, my employment and now Schatzie... I have my hands full.  Hopefully this stuff with Schatzie will go well.

Today is my Driving Evaluation

Today is my driving evaluation.  2 hours of testing, including a road test.  Not sure how this will go but I am grateful that someone had the wear with all to suggest it.  I didn't know it existed actually.

I went to Dr. Pal yesterday, Mom and I.  Our eye health is stable at the moment, so we don't go back for a few months.  She did hear from the Neuro-Ophthalmologist, and she (the Neuro) said she didn't want to make any decision until she reviews additional records.  Now I don't understand that... but, who cares... it really doesn't matter what she thinks or says anyway.  Hate to sound so rude, but that is how I feel, and I don't have the time to think any other way.

My sister is coming down for Thanksgiving...which is nice.

And... it is now 7 working days away from when my job authorized my time off to end.  What does that mean... to be honest I don't really know... I guess I will find out shortly huh?

Ok, it is two days after election day...

.. and I have to admit... I am pretty bummed out...We here in Florida in IMHO got a bum deal... 

I really want to get out of this state, because this has been the tide for a long time.  I used to be involved in politics, and I just invested too much of myself into it. 

I guess I could get involved with Angioma Alliance, and work towards that, but currently, my head is all caught up in my job.

I went to the movies today with Mom.  Just Mom and I which is hard enough, because she walks very slow, and I am very anxious when ever I go out by myself, because I really can't see, and Mom can't really see.. so we make a great pair.

Besides... I find myself feeling guilty because there supposedly is a job for me to go back to... and I look normal... or I think I do.  I can't work as fast as I would like to...and that is no where fast enough for the company I work for.  So... I have 3 choices. 1)  I can continue to feel guilty about taking my Mom out to the movies, and looking normal, but not being normal, while I am on disability. 2)  I can stay home and not go out because I am on disability, and I will feel guilty.   3)  I can attempt to return to work, not work at the productivity level they require me to, get fired, and still not be able to work.  Possibly collect un-employment for a short period of time, all in all that would destroy our family... Truly destroy it.

As I said two days ago, I am going for a driving evaluation on Tuesday... $250.00, paying that myself, since Insurance won't cover it and I am not sure what will happen next.  My authorized time off from work is up to 11-19-10, and I am not allowed to return without a clearance from my neurosurgeon, which I can't get till I see him and my appointment is 1 month later.  So that means, I can not return to work, my date of return from my neurosurgeon is 1-3-11.  So... they could in all rights, since this is a right to work state, or a free will to work state, what ever it is called, it is a screw the employee state, and it is getting worse, and 11-2-10 proved that...

So aside from my guilt, and my worries this is not a good time for me.  Not at all...

Oh well... 

Today I had another Dr.'s appointment....

... and for the first time I felt like someone listened to me, and asked me questions, instead of giving me a blank stare, and talking at me...

This is the first time, ever... I mean ever, that someone suggested I have my driving evaluated.  I have been struggling with dizziness, and double vision, and have had specialists tell me that I have a real issue, and they are surprised that I don't have worse problems than I already have, but yet when I try to tell them about my vision, and falling, and what not, I get blank stares...and they suddenly become speechless.

I told George the other day that I thought I was nuts.   Sorry, I hope that didn't offend anyone... It wasn't meant to.  I honestly feel that way.  I go through feeling guilty for not feeling right...(not right and left or red and blue right...LOL..just kidding, btw... I am left!)  I have been dealing with this now since the end of June.  Finally I had some validation to my complaints, in the form of an MRI  (which by the way was not a plus for me to find out... just validation), the dizziness and double vision I was having was justified...  But to what end?

And by the way... this is not saying that all my prayers have been answered... this is only saying that someone is taking me seriously.  I am grateful that someone is taking me seriously, and not blowing me off because this is difficult, and they really don't want to deal with it...

More to come

Ok.. today I did not go to the Doctor...

Well I didn't go to Dr. Pal this morning.  At 4:30 I woke up and heard Mathie crying, and her feet hitting the dresser, which was weird, because she fell asleep on the other side of the bed...

Well she got over there on her own.  She is unable to stand up by herself.  She kind of flings herself around trying but can't get up.  If in fact she did writhe around till she got over that way, she was probably exhausted, and on the verge of dehydrated. 

I laid with her for two hours, offering her water every few minutes, and helping her to rest and relax enough to fall asleep.

Every couple of days I go through this with her.  Of course...every few days I think this is it, and she rally's and seems better than the day before.  Today after last night or early this morning... she is better than she was the last few days.

I know this is normal, but still, I will never get used to it.  I spend 2 hours sobbing like a baby, thinking I am going to be saying good bye, and she pull a fast one...

Not that I am upset... don't get me wrong... I hope she sticks around forever, however she has become totally dependent on me.  If I leave the room, the little thing hobbles after me, if she can't find me she cries and cries till she finds me or she collapses.  This just started on Wednesday.  Not the crying part, but the collapsing part.  The exhausted on the verge of giving up, part. 

Now we have to pick up two pieces of furniture down in  Boynton Beach before the 15th of November.  We were also going to visit a friend who lives in Tamarac.  So... something has to be postponed

Gotta go...Mathie is staring at me... I think she wants to go down stair....

The Day after...

It is the day after.  Thursday.  I am still amazed at the appointment I had yesterday, and appreciative of the words of encouragement from the anonymous reader.  I am not sure I will be able to find someone, but I will not give up.

I fell again today, in the court yard.  I was close to the ground already, almost down on my knees.  I fell once again flat on my face...scratched  my glasses. Not the lenses, than got, but the bridge, and really scratched up the bridge of my nose.  Nice red, about the size of a big pea, abrasion on the bridge. 

I was leaning forward to coax my Mathie toward the dog bed I brought out for her. 

After I fell, I tried to quickly determine why I feel... this is going back to the question that was asked by the Dr.  Now this is a tough question... I lost my balance.. but why... Well, it felt like someone shifted the ground beneath my feet.  I know they didn't, but that is how it felt.  I guess you could say I got dizzy.  I might add the last time I fell like this, was when I first had the outward problems, in 2005.  I fell in the courtyard, also.

Now, I have a funny headache, and I am very tired.  Like I could go to sleep tired.  I shouldn't be tired.  I got up at 8:00 this morning, and was in bed by 10:30 last night.  I really should have gone to the supermarket today, but I really am too tired... 

But it must all be in my head, the dizziness, the fatigue, sensitivity to light.  And of course that is no reason why I can't work, although this isn't going to get any better...I can tell you that falling isn't going to make it any easier, or make me get better. 

Tomorrow is Dr. Pal's appointment for Mom and I.  She will ask me what I thought of the Dr. yesterday.  I will have to tell her...Tuesday is the Internist appointment.

Keep your fingers crossed.

I want to say up front... I am not finding fault with the Medical Community...

... However...This is what happened today. 

First let me say that at least two times in the past, I was asked if I wanted to see a Neuro-Ophthalmologist.  The first time I said, not right now... since I wasn't having any problems. The second time I was told that is who I should see base upon my problems.  So I was referred to one, I call, explained my problem, Angioma, fell a few times, intermittent double vision, blurred vision, intermittent dizziness.  I had my ophthalmic records faxed to this doctor.  I then received the call that the doctor looked at my records and said, "Have her come in"  So that is what I did.  I brought all my MRI's, medical records, except from the Neurosurgeon, since they wanted $1 a page for the first 25 pages.  I could reiterate what the doctor said...even though that wasn't good enough.

The first thing this Doctor said, when I sat down was what is your problem. So I said, I have an Angioma, on my brain stem.  So she said, that isn't the problem, that is what is wrong with you, or what you have... what is your problem... ?  Well, needless to say, that took me back.  So I said, well I have double vision, Nystagmus (she corrected my pronunciation), so she asked when I first noticed that, and I told her while I was driving, and I was scanning the horizon, and I couldn't scan smoothly, it was jumpy.  So then we debated whether my eye were jumpy or the objects were.  (?????  I guess since I wasn't looking in a mirror, so I couldn't see what my eyes were doing...the objects were, however, they were not movable objects, so I guess it was my eyes...  because I know the light pole can't jump...  Wait... I don't understand the question...?)  Then she said, you know there is nothing I can do for you... right...?  If you want me to do something for you, I can't.  I thank you for wanting to see me, that is very nice, and I appreciate that...  (oh, well then let me leave...  That way I can go eat lunch, and so can you... and by the way, wasn't it your receptionist who called me because you said I could be seen?  I asked first, really I did... I told her why I wanted to be seen, and if I should come in to see you, and she said have your records faxed over, and I will ask the doctor... I did, she did, and I am here...What am I missing...?)

Ok, so we go through the whole thing, and she is looking to see if I would benefit from prisms, and then she dilates my eyes... and we wait... she calls me back, looks inside my eye, and then says well, there really isn't anything I can do for you... As far as work, the only people who are not able to work because they can't see out of one eye are NeuroSurgeons, and Fighter Pilots... I guess that leaves me out... 

Well anyway... another dead end.  Oh wait... she did say, I am surprised you aren't having more problems then this... (Based on what... what is wrong with me?  But wait... you don't want to know what I have or what is wrong with me.  Right?)  She said from looking at me... (here we go... the neighbor can look at me and make a determination about me... I am not asking him, I am asking a specialist.  The person who is supposed to know what that thing in my head will do to me, and how that should affect my life...but you can only make a judgment according to what you see.  And you don't want to know what is wrong with me...you want to know what my problem is...OH GOD I AM SOOOOO CONFUSED!!!)

Well anyway, she asked me why I was falling, so I said, I am losing my balance... so she said... well that could be from anything, maybe you are attributing it to the Angioma, but it isn't that at all...  Maybe it is Cardio...

Honestly... I don't know, and personally I think I am crazy, because, I should be having more trouble than I seem to have (based upon my films but that isn't what we are concerned with, we are concerned with how I look)... because from looking at me, I don't have any problems.  Too bad I am not just looking at me, instead looking from me... because if I were just looking at me, I would be fine.  And since everyone else is looking at me... well, hmmpf... that is all that matters right? 

I am glad we cleared that up...!

Today is Saturday...

...and we went to a German Festival last night at Trinity Lutheran Evangelical Church downtown Orlando.  It was interesting.. veeeerrrrryyyy small compared to the German Festivals I have been to.    I had 2 Warsteiners, and they had Bratwurst dinner, but the bratwurst was smoked.  Just for the record, I don't like smoked Bratwurst.  The potato pancakes, well, they weren't like they make in Franklin Square.  All in all.. they have something to learn from us "up north".... They hate it when you say that down here....

We ran into an x-coworker of George.  He was playing in one of the bands last night... "The Brew"

The other band was the "Swinging Bavarians" they were a German Band as would be expected from the name.

I am planning on going to the movies today to see "The Town"  It is a Ben Afleck movie, and takes place in Boston.  Jon Hamm is in it.. plays a police chief apparently.

Dinner tonight is a twist on Chicken Caccitora...

X-Factor England is on tonight... and then bed.

Pretty exciting, huh.

4 days until my office visit with my Neuro-Ophthalmologist. 10 days till my visit with my new Internist, and 26 days until I find out my fate with work, or the next step with work.

Oh, I fell again one night last week.  This time a chair came down on top of me....  I was ok... small bruise on my arm, but.. I fell again.

Well better get in the shower, and eat some lunch....

I started a Blog/Hub with Recipes...

where I publicize what I made for dinner last night.  In fact that is what it is called. "What is for Dinner Tonight XX-XX-XX (that is where I put the date...) 

http://hubpages.com/profile/Heidi+R-C

It is my attempt at trying to publish recipes, and ideas.  It isn't much really, but I put it out there in the hopes that it would be of interest to someone... anyone.

It has been interesting, and I guess it is a start... well, I guess I am just down in general.  It is hard for me to get excited about anything right now.  I will keep it up, for what it is worth.  I guess if I am getting bored with it now... why wouldn't anyone else... right?

I have an appointment next week with a Neuro-Ophthalmologist.  She wanted a copy of my Neurosurgeons office notes, and I was happy to oblige, except, when I called his office I was told that there would be a charge of $1 a page for the first 25 pages, and then .25 a page there after.  Personally, I can tell her what he said, and it would be much cheaper.  So I will bring some of my MRI's (3 of them 2006, 2009, and 2010), plus the records from the Dr. in Tampa, which state that I have carcinoma, which is not what I have...because if I did... I would be dead right now... but don't question the expert...even if he is wrong. The note from Dr. Spetzler... which simply says that he is willing to operate, which is fine, but leaves out the part about, how I may not get better, and the recuperation will be long. Other than that... that is all I have...which really when you look at it...it isn't much.  I saw a Neurologist, and she referred me to the Neuro-Surgeon.

My Ophthalmologist told me that I was going to have to navigate the medical system like this... and that is what I am doing... but while doing that, I am running out of time.  Don't take that the wrong way... when I say time, I mean.. I am running out of time where I will not be destitute financially.

So that is where the recipe hub comes in.

Well, anyway.. if you read this, and have any interest in the other, or find any redeeming value to the other... give it a try, and look at the ads associated with it.  It isn't going to make me rich... (not by any stretch of the imagination...), but it will give me a little bit of satisfaction to know that I am doing something that isn't totally useless...

I will get through this... not sure how I will come out on the other end though...

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!

Yesterday we went to a wedding...

It was very nice, and we saw a lot of family from out of town.  My Mom was there, and of course George.  This was of course George's cousin who was married.

This is the first time I have gone to a function while not seeing correctly.  Actually, now that I think back it isn't the first time, but it is the first time since I have not had the ability to see clearly, and after I have made mistakes, like tripping and falling on my face and giving myself bruises.   (Which I did this past week... complete with bloody nose, and bruising including black eyes, and I think my nose was a little bit swollen.)

Now I took this spill in my own house, and was not about to do it on the steps to the church, or in the reception hall.  So I was always asking George to take my hand, or wait for me... and I felt like a real invalid.  On top of that I had my Mom to worry about.  I must have been a real sight...

I didn't get up to dance, I just sat in my seat, at the table.  In fact all 3 of us did.  I occasionally got up to get soda for Mom and I, or a cup of coffee for Mom and I.  I didn't have any wine with dinner. 

It was a nice party though, and it was good seeing everyone dancing and having a good time.

However it brought everything home, that this is not exactly a fun thing.  I am not sitting back looking forward to a lifetime of leisure.  Well it may be leisurely spent, but not in the same respect as everyone would think. 

Not going to whine today I promise.  I am going to try and do something constructive, like vacuum the family room, maybe dust.  That will be about it.  I do better at home as far as the dizziness.  I think some of it might be stress, (and don't roll your eyes! I am not over using the word... I am simply trying to describe what one feels when they aren't in familiar surroundings, or have too much stimulation around them.  Add to that feeling like there are demands on me, no matter how small...at the same time.)

So that all being said, have a nice Sunday.  The weather here now is beautiful!  Maybe it will stay like that a few more days.

Ok...

...so I found out that there is nothing I can do about my job.  If they want to fire me they can... there is nothing legally saying that they have to save my job for me.  Not that they won't, but, not that they will...  It is totally up to them and their "business plan".

Now there are some that would say..."well of course!!!  Business is in the business to make money, not lose money, and you supposedly made money for them, and now you aren't...now you are costing them money."  Ok.. I can understand that... I can understand that for 16 years I was apparently represented positive cash flow for them, or who ever they were at the time... since they changed names a few times down the road.  I was a good employee, in the sense that I didn't cost them any money.  I didn't create a problem, I did my work and then some, and I was no trouble.  And I would still be today, and I still am today... but I can't complete my job, meet the objectives that make me an asset to the company.  And... I don't know that I will be able to again.

Now that is also not mentioning that the past 3 years or so it has become increasing evident to me that I was becoming less and less of an asset to the company.  I have been told that my work is just satisfactory, as opposed to stellar.  I was just barely meeting my objectives in productivity, and with in the last year, I was told that I was paid too much money, 25% too much as a matter of fact.  At another time I was told that my salary may be adjusted according to the overage, and I would have two choices, take it and deal with it, or take a package, and say good bye.  That is in this wonderful job market of 9 1/2% unemployment.  Add to that fact I am 52 years old, and have a "thing" in my head... or I am a stemmie   (I love that, sounds better than thing in my head)

So add to that the fact that I can't do my job, and that I have a doctor who said that we will have to talk about disability before he said that he can't disable me... 

So I ask you where does that leave me...  See just like the company that I worked for is not in business for me to cost them money... I was not working all these 45 years to end up a pauper, homeless, losing everything I ever had or worked for, with nothing to show for it.  Feasibly, that  is what could happen to me.  And you know what... sorry all you self righteous, pious yahoos... I really don't care about my companies business plan.  I care about feeding my family. 

You know those Atty,'s that everyone complains about.... well the very people that everyone finds fault with, are the very people necessary to make sure people don't lose their houses and go on food stamps.

So what is a person to do...someone explain that to me...I really want to know... I wake up everyday, and wonder if this is the day I will be better...and then I wonder to what end...!

My days of being an asset are over... I have officially, I guess, become a liability....

We know what happens to liabilities...

I have been obsessed...

.. since last night, when they brought that first miner up in Chile...

My husband doesn't understand how I can watch this so closely, I don't know how he can't... but either way.. the bigger question I have is why can't the mine disasters in our country have the same outcome.  No one had addressed that... Why don't the few rescued miners that we do have come out in good shape as these guys do...  Am I falling prey to propaganda?  I don't  think so.  I think my questions are not being answered on purpose...and I want to know with all the coverage on CNN, why  hasn't that been addressed, asked or answered?

Is it because the mine in Chile, is government owned, and the mines here are privately owned?  Could it be that the miners in Chile (one was Bolivian) were in better condition health wise...than the miners in this country? If so why... and shouldn't we be using this as a learning experience.  All the way around...?

These are questions I have, I don't know the answers.  I don't know the answers to any of the questions...  I don't care about anything the experts are saying...the psychologists, Dr. Gupta ...  I just care about that they are coming out, and are safe... The rest will be what it will be...   

Either way... Viva Chile...  Congratulations, I can only hope that this wonderful story will be the first of all the rest... and we never have another mine DISASTER anywhere, ever again.

Mr. Toads Wild Ride

Today I went bicycle riding... first time in about a year, first time since my latest bout with dizziness... (Dizziness... did I ever elaborate on that... It isn't dizzy like everything is going around in circles, like you see on television...it is like everything is jumping...unless I keep my head perfectly still.)  Now let me add that I have done some serious bicycle riding in my late 20's and mid 30's and early 40's.  I don't mean like a few blocks, I mean like 60 mile a day...camping at night, then riding again the same the next day.  It was fun, and I was good...  Of course as I got older it was less intense, but... bottom line, I am no stranger to bicycle riding...)  Well it was pretty wild. 

I remember when I was in Germany with my cousin, and we would find a few bicycles (Once we mistakenly took one of my Uncles workers bikes by accident) and so my Grandmother (Oma) decided to ride with us... now mind you she was in her late 70's, early 80's. and we were amazed because she was winding and all over the road.  The reason I tell that story is because that is how I was today.  Curbs, telephone poles, the point where the sidewalk hits the grass... all of those things became obstacles for me... and do you think I hit the brakes... Nope, I did stop pedaling... but I think I was my Oma for a few minutes there.  The only difference is I wasn't telling my husband to watch where he was going...

I mentioned that my husband had a stroke, well up until not to long ago, (within a year) he would talk about things not feeling real around him...  I couldn't understand that.  But now I do... Thinking back on our little jaunt on the bicycle... it doesn't seem like it really happened...  I know it happened, and I know where it happened, and I know that I went along with it, wanted to do it... put air in the tires, made sure the helmet was on correctly, and tight, but I think my vision, the way things look to me have an affect on my perception of things. 

For the past 4 months I have been trying to do things around the house... Mostly the only thing I am successful at is making the bed and cleaning out the litter box.  Well, unloading the dishwasher and putting things away, I miss the counter, hit the trim on the cabinets, bang my head a lot, can't seem to get a feel for where things are around me.... Possibly because I walk around squinting or with one eye closed in order to see things clearly.  But nothing has been like this bicycle ride.  This was Mr. Toads Wild Ride for sure.

But I am sure that it will have no bearing on anything.  After all, I don't ride my bicycle to work, or for work, I sit at a desk and type orders, and answer the phone.  No reason why I shouldn't be able to do that... 

What, what is that you say... the other stuff that a person does in life... Hmmpf... don't look for society to worry about that... that is your problem.  But when things get out of control, and you can't do the maintenance on your home, and care for your Mother, or care for your family...well then we will put you on Dr. Phil or reality TV, and see if they can help you... and someone will rake in the bucks from the sponsors, and you will be the talk around the water cooler and at the lunch table...  What more do you want out of life...?

Mr. Toads Wild Ride...yup.... Mr. Toads Wild Ride....

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... 

Website for the US Senate Committee on Health Education Labor and Pensions.

This is the link for the Senate Committee: http://help.senate.gov/

And here is a link to a letter. Now this is an old letter from the old bill that was postponed this year 2010, but it is good information.

http://www.angiomaalliance.org/pages.aspx?content=353

I really want to do this, and if I had some help... well, that would be wonderful...

I may not be Michael J. Fox... but I think we should all work together for each other...

I just found a blog this morning...

... and it was great. Click on the title of this post to go to her blog.

It is written by a 20 something who has been diagnosed with an Angioma, like me, and it is her take on her life, and how it has changed.

Hers is on her brain stem, just like me, and we have a name now (and I think it is so neat), "Stemmies".

Well anyway... as you can probably tell from my picture, I used to be heavily involved in politics. Not sure I mentioned it before, but it started in 2000, and it ended in about 2004/2005. Not very long you might say... but I was totally immersed in it. That is how I met my husband, and most of my friends. But it was done in my spare time...I have a full time job. That is another story.

So I was thinking... maybe I should use my knowledge, and limited connections, and bring these Angioma's to the fore front. You see there is a bill, #3684 or was a bill that was being introduced to the Senate Committee on Health, Education, Labor and Pensions, to fund a research center in New Mexico for a care center for Cavernous Angiomas.

Now for those that aren't familiar with Angiomas, do a Google search for "Ryan Westmoreland", or look at the blog I linked above. Or http://www.angiomaalliance.org/

In the mean time, I guess I will use this blog instead of just an on and off diary, that no one really reads or cares about... to a chronicle of my efforts to make my brain injury/neurological problem, better known, and not ignored out of convenience.

Angioma is not understood, it is often swept under the rug, and when you talk about it you get blank stares. That has been my experience. As much as I like my Neurosurgeon, and I think he is very good... to a certain extent, that is somewhat what my experience has been with him. The explanation from him and other Doctors has been, we just don't know what to do for you... (since mine is on my brain stem and inoperable).

Now I have sent my films and report to Dr. Spetzler in Az. at Barrow (that is where Ryan Westmoreland was, and Brett Michaels, albeit for a different problem), and Dr. Spetzlers office has called me to say that they can operate on me... I have given it some thought, and spoke to my Neurosurgeon about it.

The conclusion I came to was, at my age, with my charges (family, responsibilities, etc), that at this point my efforts and time would be best spent trying to make things better for those that come along behind me... Anybody who would like more of an explanation is free to ask for one.

So for now... I would like to do that. It is coming up on a new year, and that bill I spoke about earlier will be re-introduced. Well, introduced, since I think it was postponed before. It will probably have a different number. I live in Florida, and we have a freshman Senator coming up. I am going to keep my eyes open, maybe he will get on that committee, and maybe I will have someone to talk to about this. Or maybe I will have to do what I can in the mean time.

Stay Tuned to find out...

The Latest...

Been a while, right... well yes it has, and I am here to tell you the latest, greatest, or may not so great news.

I have been thinking about changing the name of this blog. But I don't think I will... because I am sure no one will be looking at it any way... after all they haven't looked at it yet...

Ok, here is the news. I have been off work since June 26th. Two weeks of that time was spent on vacation, and and the rest of the time has been on medical leave. That Angioma, that I spoke about previously has decided to give me trouble, and to be perfectly honest, I am tired of talking about it and thinking about it. But I will again one more time. Or, a few more times if I need to.

The long and short of the whole thing is that, it grew 2.5 times it size since 2006. Now, what it was in 2006, and what it was last year is not quite clear. I believe last year it was 9 mm., and when I had my last MRI in June it was 15 mm. Not quite double in size in the last year.

I knew it was not right before I went on vacation, hence the request for an MRI. I was having problems before, however, every single time I have looked for assistance or advise when it has come to my Angioma and the medical field, I have been pushed from pillar to post. The fact that the doctor I had finally gotten back in with was no longer available to me didn't help.

But I got the MRI, and found out the results 1 day before leaving for vacation. As I had said before, I was having problems, but couldn't seem to get anyone to listen, so now with a report that shows growth to that degree, I was especially scared. But thanks to cell phones, and a lot of time on my hands, due to the 3 day drive ahead... it showed a little more promise.

I finally was able to get in with my Neurosurgeon, well the PA anyway, so I planned the appointment for last day of my vacation. The PA was able to take me off work for a month. I then went back to the doctor on month later. I told him I was not feeling well enough to drive, and he took me off for another month. However he didn't schedule another appointment so, when I called them to advise that I needed help in the way of a form filled out... and signed by the doctor, they scheduled another appointment, and gave me another 2 weeks off.

The day came for me to see the doctor, and for me to explain to him my situation... by the way which is not really a concern to anyone but myself and my family. I explained that I am required to work at 100% productivity at work. That is a requirement. Not 80% or 85%, but 100%. I am not able to do that right now. And, I am not able to drive either. I can drive, but it is very tiring.

See, what is not obvious is that I have to work very hard, all the time, to see clearly. Most of the time I see double, and not to see double is very tiring. I am fighting my eyes almost non stop. That basically exhausts you by the end of the day, and because you are tired, you aren't at your peak performance. Not to mention, then keeping a house clean, caring for my Mom, who lives with us. Laundry, cooking, all has to be done at the end of the day, and on the weekends.

I guess if I were to compare it to something... I would say, cross your eyes, and keep them crossed all the time, and only let them relax when you are watching TV, or doing something where you keep your eyes focused on one spot for prolonged periods of time. Tell me when you get tired and can't do it anymore. Don't worry, it won't take long.

Well anyway, the doctor then suggested I stay off for 3 months. So that is where we left it. Now my problem is that the form was faxed from the Dr. about a week ago. My employer was supposed to address my advised time off from work last week. I called about it Friday. I e-mailed about it Friday. I e-mailed again about it yesterday, (Monday), both the "time off group/individual" and my immediate supervisor.

I was told not to worry about it, and that it will be approved or addressed Monday or Tuesday. It is Tuesday, at 4:42 eastern time, and so far I haven't heard anything. I am getting nervous. Anything could happen right now. 1) they could approve it. 2) they could deny it. 3) they could tell me I have to see one of their (experts) (tic). I am not sure where they would get him or her from, since I have known about this thing for 10 years, and I still don't have an expert on Angiomas. My doctor is familiar. He seemingly cares. But since these things are so rare, 5% of the population knows they have one or multiples, and only 2% of that 5% have brain stem Angiomas. That is what I have.

Well I better go for now... will be back tomorrow... maybe I will have news, or maybe I won't. I guess we will find out tomorrow. Have to start dinner now. See ya!~

We lost a cousin last night...

George's cousin Joey passed last night, after fighting liver cancer for the past year. I think back over the past year, and think about the Sunday afternoon we recieved a phone call from up north, which of course immediately put me in alert mode. After all it isn't often that we recieve phone calls from up north, with e-mail, and Facebook, giving us instant contact with our loved ones far away.

As soon as I heard who it was on the other side, I became concerned.

Joey and his family did thier due diligence, doing research, seeking opinions, and finally settling on Cancer Centers of America, out of Philadelphia. They did tell him that it would be a tough road to go, but they were willing to try to lengthen his life and work toward getting him well. I think the outcome was about the same...but he did have a good quality of life up until about a week ago. Personally I find that to be comforting.

I am glad we able to see Joey this past July. He went to a Yankee game at the new Yankee Stadium... with one of his daughters, and he really enjoyed that... I mean he really enjoyed it. We saw him that evening, and he told us how great it was. Even though I am a Red Sox Fan, was happy for him... very happy. We have lots of pictures of him too... He looked good!

Joey suffered at the end, between the infection, and his weakened state, the last chemo treatment tore him up. He had all the classic problems that Chemo patients get, but no ability to fight back. For the most part, his last year was not terrible, but the last week or two made up for it...

Now I worry about those he left behind. His daughters, his wife, he brothers and sister, his nieces, and nephews, and his cousins. I think in time they will be fine thinking about the good times and the smiles. I know that helped me when I lost my Dad. I hope they can carry him with them through their life. And live up to his expectations, even though he isn't there to remind us of them. By doing this, they are keeping him alive in their hearts. When he is there, he will always be with them, where ever they go, what ever they do.

I only have 10 minutes...

Well, I did speak to George on Friday, and I told him that I am just tired, and worried about his health, and don't appreciate his "friends" making comments, because when push comes to shove, I will be the one caring for him, taking time off from work to make sure he is OK in the hospital, just like I was before...

And... that I want him to start taking care of himself. Well he has been trying to help me around the house and he made dinner last night, and it was very good... And he is making dinner again tomorrow night... and he even sat and watched The Bachelor with Mom and I... So he is trying...

Mathie had trouble walking and standing last night, and I am guessing and hoping it is arthritis... She is 15 years old this year, in fact next month. So hoping for anything other than something terminal is a plus for me...

George's cousin is very sick, and I am very worried about him. He has liver cancer, and we are hoping that he can pull out of this. The intubated him last night, because he stopped breathing. His blood pressure is extremely low... It is very hard at times like this, because you don't know what would be best... I know that sounds terrible, but his whole family... wife, kids, brothers and sisters and even cousins are suffering so right now... When you hope that the next day will bring good news, but it only brings more discouraging news...

Todays... frustrations...

Ok... well, today... As I am sure everyone is aware, there is a social networking site called Facebook. George is on it regularly, I mean R-E-G-U-L-A-R-L-Y. He has 156 friends... probably almost half he doesn't really know. Just "friended" them, and they friended them back. A few I believe are aquaintances from his Stroke Survivor website.

Anyway... needless to say, I don't know what George is doing about finding a job. For what it is worth, I told him that I would rather he have a job when her retired at the ripe old age of 49. He assured me at the time, that he would... that is almost a year ago. From what I can tell he is sitting home, watching old base ball games, and posting to Facebook. His 'aquaintances', are apparently all fine with that... but why shouldn't they be... they aren't watching him grow bigger, and bigger, while I grow more tired every day. Today's aggravation came in the form of him making a few smart ass remarks, in reference to me or my dog, and his little friends joking and being sure to add they smiley punctuation [ :-) ] and their lol's, telling him to watch out because someone seems to be getting angry, and that I should be more gentle. Well #1, I don't appreciate be addressed by these individuals. And #2, maybe if I were home, hanging out.. I would find it amusing also. However, I am not. I am sitting in 45 minutes of traffic everyday, driving into the office, and home. Not to mention the crap I put up with for 8 or 9 hours once I get here. My weekends are filled with frustration, because I can't seem to get the chores done around the house to have one day to myself. I have to tell you, I cherish the hour or two that I spend on Saturday or Sunday ironing... all alone. Last week I wanted to go to the movies, but we didn't go... this week, I think I will, no matter what time of day it is... He can sit home and trade "quips" with his aquaintances on Facebook.

If I need to take a day off, just because I am exhausted, or need to take my mother to appointments, that eats into my vacation days. If I run out of vactation days, which by the way are my sick days, I have to take non paid days. That means there is nothing replacing my salary. His pension brings in about the same amount of money as my first job in Florida, and that was 25 years ago. And even then I worked a full time job during the day, and then 4-5 hours at night, and every other Saturday.

Maybe he doesn't have to tell me what he is doing. Maybe I have it all wrong. Perhaps someone, if anyone reads this, would like to weigh in on that.

Personally, I would think he has an obligation to tell me what the deal is... or at least how he is looking for work, if in fact he is, and he isn't finding any.... I haven't seen him look in the classifieds, or go to one of those employment websites.

Then I hear that he thinks it is all my Mother who is putting the extra burden on me. That, because of my Mom, I have two full time jobs. I guess he isn't in the room when I come home at night and go right to work, fixing dinner, cleaning up, making sure the dogs don't fight over thier food, then make sure my Mom gets the drops in her eyes, before she goes to sleep. Most of the time he is sitting on the couch, with his legs up... and usually the computer on his lap, open to Facebook...

I just get this feeling that I am being taken advantage of big time. I mean big time. Wife or girlfriend, it doesn't really matter. The fact is, I am working a full time job, taking care of a house, my Mom, and my Husband/Partner is sitting on the couch, on the computer, or watching TV, and really contributing very little to the daily responsibilities, and I am about over it. To be perfectly honest.

OK... so I am still tired, still frustrated...

... but I am getting to the point I just don't care anymore. Is that bad... I don't think so... I think it is inevitable. It is kind of a protection mechanism. I believe eventually all people go through it, some just earlier than others.

For me I believe it is a defense mechanism, because I don't think it is humanly possible to go on, and on, and on in life, and constantly fighting, to get where you want to be... or need to be.

My childhood was good.. I mean, other than not being well off... but we had a good family.. strong Father, good Mom, and I believe a healthy relationship with my sister.

Then comes my early adult life. Which could actually be combined with my later teen years. Aside from a few incidents, such as boyfriend issues, I mean pretty substantial boy friend issues...I went right to work, for the most part paying my own way. Bought my first car from my parents for $800, then about a year later purchasing a brand new car.. a 1980 Mustang, ordered it from the factory... paid for it monthly for 2 years. All that doesn't sound like much, but based on what my friends were given. New cars every year (in some cases), or at least their first car, plus college educations, wardrobe, etc. I paid for my own braces, for two years... So I guess you see where I am coming from. But that made me stronger, prouder, etc.

Then I moved to Florida, alone, without a job, no family... A good friend, but that passed to. Moved into my apartment, worked 2 jobs for over two years, so that I could fly home fairly frequently. Then came my own house. More boyfriend issues, and financial problems... My Dad had a stroke, in an attempt to save his property in NC from being taken away from him, I took on a very large... I mean verrrrry large portion of his debt. That turned out OK, because I managed to figure out a way, with Consumer Credit Counseling to get out from under that burden. And it wasn't easy like claiming bankruptcy... Let me tell you... that would have been easy.

I thought about adopting a Ukranian baby, and raising him on my own. It was a pretty expensive propisition, but that isn't what detered me. I learned that it wasn't legal for single parent adoptions in the great (and I use that term very weakly) of Florida. I got involved in politics, on the losing side, over and over. But I still fought, I still believe in the Democratic ideals, but I no longer believe in the people behind the Democratic Party today.

Then I met my husband...and we lived together for 7 years. There were about 5 years that were absolutely wonderful. But then things started to turn sour. My Dad had his 3rd stroke, and then suffered with dementia. And that is when this Blog started.

At one point, I believe in 2006, I suffered from a Cavernous Malformation and Hemangioma on my brain stem. This is something I had from birth, and in some cases it is genetic. I guess in most cases it is... I guess it depends if you carry a gene. Not really sure of that... None the less, I had a very bad episode in August of 2006 that lasted about 3 months. The final prognosis was, well... you will have these episodes more than like for the rest of your life... It will probably happen in clusters, and oh... yes, by the way... it is on your brainstem... that is pretty expensive real estate, so at some point it may become fatal... but, hmmm well if we operated, that could be fatal also... Maybe we should just watch it. So that is where I am at. Also, I have the threat of glaucoma.

So all that being said... I am tired, and from my post yesterday, I do fear that my husband will out live me... heck sometimes I think my 85 year old mother will out live me. And ironically, I would like to live forever. I think that is because at some time between now and forever, I can grab sometime for me.

I would like to be able to take some time every once in a while, when I feel this thing in my head is leaking (that is what it does it leaks, and then it gets bigger, and infringes on the "expensive real estate") and if I had some time off... to get out of the rat race, remove the stress, I can either stop it, or at least control it alittle bit more. But that seems unreasonable by todays standards. You know... the way the mentality goes in todays society... you have to be a productive member of society, if you aren't you are a parasite on society...see... a leach... Better I should be a vegatable huh... or better yet dead.

I really feel this way... I have disability here at work... but try to get a doctor to say that you need a time to recoop... unless of course you are mentally disabled... then oh... by all means... you need take a step back... probably because they think you will get a gun, which in this hell hole of a state, are legal.. so I could go down to Walmart and pick one up... But since my condition doesn't preclude me to moments of insanity... just the possibility of brain damage, to the point that I wouldn't be a threat to anyone else... screw her... Let's just see what happens...

I am so frustrated....

Ok, tell me if I am wrong... Maybe I am, but I am not really a selfish person... but I need to understand something...

This is my situation... I am 51, got married almost 3 year ago for the first time. After... my husband, then boyfriend had a stroke. I had to take off from work 4 weeks before I got married, 10 days of those 4 weeks, we spent in a hospital, with no rights what so ever, except for the good will of a few nurses and doctors, who allowed me to be involved to the extent that I was. The next 3 months of my life were spent, being a Physical Therapist, advocate, chauffeur, cook, maid, and partner to my husband.

Then I went back to work for the only, and I mean only income we were taking into our home for the next 10 months. Needless to say, we went through close to $40,000.00 in savings. My husband then went back to work for about a year, really less because the first month was only part time. After that, he took early retirement, with a pension, but far less income than he brought home before he went to work.

One month before he retired, however 4 months before, we decided to bring my Mother (84 at the time, lived alone) down to live with us. So since April, we have had my Mother living with us. Since June, I have been the the main bread winner, working every day, full time, driving 45 minutes to work and back, then coming home, cooking dinner, cleaning up, and then giving myself about 1 hour of relaxation for the day. My husband who was going to find another income, hasn't. On the weekends, I need to clean the house, which included 3.5 bathrooms, 3 bedrooms, laundry, etc. I really for the most part don't get alot of help. On Saturday mornings I take my Mother to get her hair done. I get up at 8:00, and from 9:00 to 10:55 I am coaxing her and helping her to get ready. I kid you not... that is almost 3 hours of nagging, for the most part, helping in and out of the shower, laying out clothes. Mainly because if I didn't, it would take more than 1 hour to get her ready to leave the house.

Needless to say... I am tired. Very tired. So tired as a matter of fact, I am finding myself close to tears when I think about what I have to do...

I often think that I will not live very long living like this. And needless to say... I don't want to work like a dog, only to find myself in a position of finding myself at the end of my life. If you know what I mean...

Because between you and me...it will all be for naught. My husband is not the type to be on his own. He will find someone else, and then all I worked for will be enjoyed by someone, and all though that might sound selfish.. it is what I feel, and I think part of it is out of resentment.