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!!!!