I am confused, concerned. I hope everything is OK!

I haven't been around in a while.  Well around here.  By that I mean my blog.  A lot has happened.  My friend Tarja from Sweden is MIA.  I hope everything is OK with her.  I hope she is healthy, and nothing bad has happened to her.  If anyone knows, please let me know.  If it is something personal, I don't want to pry, just want to know that she is OK.

I just read my last post...

...needless to say.. I feel compelled to continue the saga, and let you know that everything worked out fine.  I guess Wayne was having a bad day, and admittedly... so was I, when I read it now.

Anyway, we went away on vacation, and everything was fine.  Schatzie did fine, Wayne did fine, and we made it home fine.

What happened was.. I spoke to George and explained to him that I could not leave with the feeling that I had at that moment... about leaving Schatzie.  He understood, and he spoke to Wayne, and explained that, well, there were no variables here, and she needed to get the shots at the 12 hour increments, no deviation from that.

When George spoke to him, there were no excuses, comments, etc.  Maybe there weren't when I spoke to him, but it seemed to me that there were.

Well anyway.. there you have it.  No problems any longer.

Now we are planning a camping trip next month, and there is a question whether we should take Schatzie with us.  Part of me says no, and part of me says yes.  The jury is still out on that...will let you know.

As far as what's new.  Well it has been very cool lately.  Today however it is almost 80 degrees.  Anything over 80 and I start to get hot... I mean real hot.  I guess it doesn't help that I am sitting here with sweat pants and a long sleeve T-Shirt.  The last power bill that came in was very nice and LOW... almost half of what it was the month before.

Also, need to get some work done around the house, and don't have the inclination to do anything.

Well that is about it for now.  Will keep you posted on what happens with the camping trip. 

It is Sunday...

It is Sunday.  About 11:00 AM.  About 1 month before we leave for the North East.  Not sure if I had posted this previously, but Mom's dog, Schatzie, was diagnosed with diabetes last October. 

Well, we have a pet sitter, and I have sang his praises in the past.  I still think he is good... but I now need him to take care of Schatzie while we are gone.  This is going to take extra effort on his part, since it is imperative that she gets her shots at the same time every day (twice a day, 12 hours apart). 

Well he came over last week to see me go through the routine, feed her, give her the shot, and then give her a glucosamine pill.  He only came over for the evening routine, which differs slightly from the morning routine.  He also had pizza.  Which George went out to pick up. (since I don't drive anymore, and it would cost about $7.00 more to deliver it)

While George was out, I proceeded to show him the shot, and basically the routine.  Which by the way, I have discussed with him many times, and he has assured me that I had nothing to worry about.

Until now.  Let me now tell you everything he had to say ... all of which was negative.  Totally negative...

His responses to my actions or what I said will be indented and in blue.

• I cook for Schatize.  She is diabetic, and when you buy the prepared dry food (all canine diabetic food is dry) she will not eat it.  She does not like it.  If she does not eat, she can not get a shot.  If she doesn't get a shot she gets sick... I can't make it any plainer than that.

•  Wayne said:  "Well this won't last, I can't tell you how many clients I have that have tried this...."  (pointing at the container of food I prepared) "and they get tired and go back to feeding canned food."

          I explained that this was not a choice I had... If I didn't cook, she didn't eat.  I also explained (patiently at this point) that Schatzie could not eat canned food.

• At this point, I am buying the ingredients, and preparing Schatzie's meal, and storing the ingredients and the finished product in the freezer.  This is taking up a lot of space.  However, at the appointment that we have for Schatzie this week with Dr. Martin, I will ask him if she seems to be doing well, and if her Fructosimide blood test comes back good, I will be buying a freezer, so that I have the room to store everything.     

• Wayne said:  "Oh that is very smart, you will be gone during hurricane season, what if the power goes out?  Then what do you think will happen? Last time a hurricane went through, the power was out here for over a week."

Needless to say I was starting to get frustrated, so I said, "...call us, and we will take care of it, until we get home, you will be able to handle this."  That was just responded to by a shrug.  So the next thing I said was "...well then my only solution is why don't you just cook for her every day... how is that?

• Needless to say I went to get the needle, and the insulin, and fill the needle.  Schatzie is on a fairly high dose of insulin twice a day, 35cc's.  I told him that it is best if he fills the needle each time he gives her a shot, since the solution will settle if you pre-load the needle and take them out as you need it.  I show him how not to shake the bottle, and make sure it stays cold, so don't leave it out on the counter, and that he needs to be careful, because the bottle/vial made of glass will break if it falls on the tile.

• Wayne says:  "Oh boy she takes a very large amount of insulin, cats only take 1 cc.  You better have enough insulin here for me, so I don't run out."

While I was explaining how to mix up the insulin, not to shake it because it will cause bubbles, and destroy the integrity of the insulin... he was more focused on amount of insulin I was filling the needle with.

• I started to give Schatzie the shot, and she whimpered a little, which is not all that unusual.  I tried to explain to him that you have to inject the needle slowly, because the insulin is cold, and it is less painful.  The best thing to do is to count and you should be finished between 10 and 15 seconds.

• Wayne says:  "She cried because you were awful close to her spinal cord.  You have to be careful of that."  I started to tell him " I wasn't close to her spinal cord, because you give the injection under the skin.  You pick up a handful of skin, and insert the needle (which happens to be very short, btw) below your thumb, so you are no where near her spinal cord."  Wayne seemed annoyed by this and responds immediately with "I watched you, you started with the needle horizontally, and when you were finished the needle was vertical.  That means it was injecting her spinal cord.  That is a very sensitive area on animals, and you want to stay away from there."

 At this point I have had enough...  George is out getting the pizza, and my patience is gone, finished, non existent.  Basically I have moved on to think, what can we do...should we kennel her?  Should I find another pet sitter?  Should I take her with me?  Should I cancel my trip?

• Wayne then asks me:  "What time is her last walk?"  So I said "9:30 / 10:00 at night.  You have lee way on that."  Wayne then buries his face in his hands, and says, "Well that just isn't going to work!  I have another client on the other side of Oviedo, who has their last walk at 10:00.  If I have to be here at 7:30 to give a shot and a walk, then at the other place at 9:30/10:00 to walk that dog, then back here to walk Schatzie, I might as well camp out here.  I just don't know how this is going to work.  And I have to be here at 7:30 in the morning to give her a shot...?  I just don't know how this is going to work.  September is filling up quickly, which is not a bad thing... I just don't know how this is going to work."

To say I remained silent only responding to him a few times when I had to, is a pretty honest statement.  To me, he was looking for any reason not to take this job.  Unfortunately for him, that means he is losing a customer, and a helper for when he is over loaded with work.  George has covered for him over the last few months, and Wayne owes him over $500.  A credit we have been carrying to go against what he would charge us when we went away this year. 

We have been using him for over 10 years.  We have recommended him to others, we have helped him on various occasions and not just in reference to pet sitting.  Not to mention the fact that we told him about Schatzie as soon as she was diagnosed, we told him about this trip to NY in September in December of last year.    


George said I am obsessed, and I am getting upset over nothing.  Maybe I am, but none the less, I have to live with this.  I am not going to be a very pleasant wife or vacationing partner for him, if this is not addressed with in the next two weeks.


All I can say is if I am being an ass hole...so be it, then I will shut down, and you know what happens when the ass hole shuts down.  I am planning the whole trip.  I have contacted everyone.  Set up the itinerary.  Scheduled all the appointments.  At any point in time, I can just as easily stop...  he can go if he wants to.  I will stay home.  I can be a real ass hole... watch me...








 

A new beginning...

Here I am 53 years old, retired because of a medical disability.  I am not complaining.  Not at all.  I am not rich in the monetary sense, but I think I am rich in other ways.  I have a good husband, who loves me and I love him, and we have the same values.  We have a nice home, we have good friends, and we have good family.  Those are things you can't buy with money, except for maybe the house.  However, you can't buy a home. 

We are planning our next yearly trip to the Northeast.  Why the Northeast you might ask, to visit family.  Mom would come with us in the past, in fact she made 3 trips up north with us, out of 4.  We will miss her this year.

We were going to stop in Baltimore to see the Red Sox play the Orioles, but we planned this trip late, and there weren't that many good seats left.  So we decided not to go.  We were also thinking of going to Colonial Williamsburg.  Will not work this year.  We can always plan that maybe next year by itself. 

This year we are going to the Steuben Day Parade in NYC.  When I was younger we would do this every year with my Dad.  It was one of our trips to "Meca" so to speak.  I think Mom was looking forward to going also. 

Our friend Hans Jurgen gave us a bunch of stuff for my car.  Flags and what not, that will adorn the Volkswagen on our trip into NYC on the 17th.  I will be sure to post lots of pictures.  I am really looking forward to going.  I am hoping that a lot of relatives will be going with us.  We could possibly go to the Plattdeutche Park Restaurant on Sunday, but it is usually soooooo packed with people, it may not be worth it.  I know last year it was.

So those are the big plans I have coming up.

Kind of sad all the changes that have happened recently.  Mom passed, Mathie passed, Wesley passed.  Lot's of big changes.  But I guess that is part of life.  It just kind of happened all at once for us. 

Well, I am planning on ending this year with a bang.  A good bang.  It started pretty sad, and just kept going from there.  Now we have a chance to turn it around.  The economy is pretty bad, and the people in Washington are pretty worthless, more than usual.  But the things that they can't effect, like losing family, and long time companions (Mathie and Wesley) showed me that they really don't really count unless you let them.  I don't plan on letting them hurt us this year.  We have had our share.  We really have.  I plan on proving how insignificant they are... to the best of my ability.

Pretty soon it will be time to smile...

Yesterday ended a part of my life that was very special.  It started over 16 years ago.  I always knew that one day things would change, and we each would have to move on.  Well yesterday was the day.

We said goodbye to Mathie.  She was truly a special little creature.  She was more special to me than a lot of people I know.  She had principles, more than most people.  She had standards, boy did she have standards.  In fact a lot of times I didn't meet up to her standards, and she had no problem letting me know.  However, she loved me more than life herself.  I have to say I don't think anyone ever loved me or ever will love me as much as she did.

What I find most difficult at a time like this is... I want to call my Mom and tell her that we said goodbye to Mathie, and I can't.  Maybe she knows, maybe they are together right now.  God it hurts right now.  Honestly if they were both looking down on me right now and watching me it would still hurt, but I could look at them and know that I didn't have to worry.

When Mathie was a puppy, I found her.  She was less than 4 pounds.  We were in Kissimmee, I was at a boyfriends property...I had my big girl Gretchen, and we were walking Daisy and Chrissy (his dogs) one morning.  Mathie came out, literally screaming, but she came to me... and we fell in love on the spot.  That started a 16+ year love fest.  We went everywhere together.  We did everything.  She trusted me 150% percent, no exaggeration.  When I had big decisions to make, she was right there supporting me.  When I tell you that she supported me... I meant it.

Well she is gone now.  I said goodbye to her yesterday morning.  I held her and kissed her and told her that I loved her, and how sorry I was that she had to go.

The last 7 months she couldn't walk very well.  But she rode in a little red wagon that we bought for her.
We put her in her wagon, walked her in her wagon to the spot that she could go potty, and then put her back in the wagon.  When it was cold.. and there were some cold days, she was wrapped up in Opa's blanket.

She has left a huge whole in my heart. HUGE!!!  That I can't help.  Mathie planned it that way.

What a Day...Morning...Oy!

So... here are the curtains I made...Notice little Annie, looking in the window next to the bird cage.... 

Made me smile, because God knows, I need to smile today.

It started out like this... My sister called to say that the Johnston County Clerk of the Court would not release to her a copy of my Mom's will.  Now mind you... the will is public record, once it is with the Clerk of the Court, and it is supposed to be there so that it will be accessible.  What they don't tell you is that is only accessible to someone if the people at the clerks office know what they are doing.  In the case of Johnston County... they don't know what they are doing.

However then Will Crocker, the right and honorable Will Crocker, the actual Clerk of the Court, then called me back, and said that he had his very good staff (OH MY GOD!!!) in his office and that he was going to do what ever he could to get a copy... mind you that is all I wanted was a copy of the will, to me. 

Well, I called my Sister, and told her to call them, and there is something you have to know about my Sister.  She may have been born in NY, but she can turn on the "sweet southen' suga'"  when she has too.  Unlike her "Yankee Heathen Sista" (me!)   Apparently she was told that she "might could" send the death certificate by e-mail to their office.  That is because they tried to fax it, and it didn't work.  Twice... she tried to fax it and it didn't come across.  (DEEP SIGH!!!)

Now I wouldn't be so worked up about this, except, I called their office 3 times.  I e-mail once, and I was told that I could have my sister pick up a COPY if she brought a copy of the death certificate.  As far as I am concerned.... I am a novice at this... they on the other hand are the professionals.  They are supposed to know what they can and can't do...I have only done this once...thank god I don't have to do it again...

My appointment with the Attorney here is next Wednesday at 2:00.  Hopefully I will have what I need.

The next thing was this.. my husband, George, is helping out our pet sitter Wayne Tracy, because his Mom passed away.  He is watching a cat who is approximately 25 years old.  Wayne called this morning because the cat, from all appearances, had not urinated in about 24 hours.  A sign that the kidneys are shutting down.  The owners are on a cruise, and I think are due back tomorrow.  Why some one would leave to go anywhere when they have a 25 year old cat is beyond me.  But... that is just me.  I saw this cat...very scary... god bless him... really.  Any way... the decision was made to bring the cat to the vet.  Maitland Veterinary Clinic.  So since Wayne was on a plane to Rhode Island... George picked up the cat (Boomer) and took him to the clinic.  The receptionist told my husband that they would not see the cat, unless he was going to guarantee payment for the visit.  So George called me to see if I had a problem with that.  Of course I didn't, but then I thought, surely if I don't have a problem, and we are broke, the vet wouldn't have a problem billing the owners of the cat.  I asked many ways, I explained to the receptionist that we are on a limited income, and my main concern was the cat... so he said, as is ours... but they were not set up to collect from anyone but the person who brought in the cat.  I didn't say it, but it sounded to me like their first concern was the money owed for the visit, and not the cat at all... since they would be very satisfied to let the cat die, and not be seen if we didn't have a credit card or cash...

Well as it ended up, the cat is fine, well, as far as his kidneys are concerned.  He is still approximately 25 years old.  That can't be fixed. Oh, and the visit, was only $35.00.  Of which, I am guessing will come from the owners who happen to be on a Princess Cruise.  Just sayin...

However, we still don't have Mom's will.  And the hospital bill is still looming out there.  Mom's mortgage is still due every month, and as low as it is... I don't have the money to pay it.

That is still pending... I am sure I will be filling you all in on the saga of the Will and Johnston County.

Today...

... I am making curtains for the back door...  I should have made them a long time ago, but I am going to make myself do them today.  I will take a picture of them when I am done.

These will not be difficult curtains to make, but I have to force myself to do them.

Everyday I will try to accomplish something.  Today will be curtains.  I read my book outside this morning... "A Year in Provence" by Peter Mayle.  I am up to July.  Nice book...

I am starting to think about where things will go once we move down to the other bedroom.  It will be a few months, and I have a few things I need to do before that happens... and I will need to have the outlets for phone and cable switched, since I am thinking of changing up the furniture a bit.  But I think it will be very nice, none the less.

I have before and will have after pictures as that happens.  I also want to plan a trip out west to the National Parks.  That will be next summer.

As long as everyone stays healthy, we need to start doing things for us.  Since I don't think the house in Connecticut will ever work out for me...(deep sigh, oh well...never say never, so how about...probably will be a very difficult option.. how was that?), I want to spend my summer months going places that are NOT Florida.

This year we want to do a cruise, a trip to NY for the Steuben Day Parade on 5th Ave, a trip to the Finger Lakes Region, and maybe a trip to Williamsburg, Va. 

Oh... and if there is a Red Sox game on the way... that works for me!!

A stroke support group...

Yesterday George and I went to a stroke support group at Florida Hospital in Orlando.  It happened to be in the Florida Room, that George and I sat with many guests and used to spend a lot of time in.  It brought back some very bad memories.  Both because this was the hospital that Mom was in, and I was just there, only a week ago, and not for very good reason, and of course that is where I spent 10 days only 4 years at not such a good time with George.

It was rough, just all around rough.  This group was for people under 50 that have had strokes.  It was so hard, and so gut wrenching.  I wanted to run out, but I couldn't, even if I were able to.  All these people who never experienced stroke, or their experience was fairly recent, and the only time they experienced it.  I wanted to do more for them, but there is nothing I could have done. 

I wanted to talk to them, I wanted to tell my story about my Angioma, but I know that no one would have understood... not even the physical therapists there.  They were talking about the "angioplasty" and the surgery they had done.  They were hungry for information, yet they did not have the patience (maybe because of the stroke, or maybe they never had it) to listen.  They were all impulsive.  Almost rude, but not at all intentionally.  It was like being with my Dad, and George, right after both of their strokes, only multiply it by about 10. 

George had said he wished it could have been controlled more, or led.  From our standpoint, I have to agree.  However to suit the purpose of the meeting.. probably not.  See, most, no, maybe half, of these people had their strokes with in a year or 6 months.  They were still, a lot of them going through PT.  They needed to not work so hard for an hour or so, around  others struggling like themselves.  Believe it or not, many had insurance but it didn't cover occupational therapy, or speech therapy.  Those are the two that make you feel as though you are getting back to yourself.  Those are the two that give you the social skills that are missing.  Gosh I have a big problem with that.  What a person needs most, is not to feel like an outcast.  The obvious disability will be the physical one, and yes that needs to be addressed, by all means.  What was good is that the physical therapists were there to give everyone hand outs to help them address those needs if they wanted them.  What I am afraid is that many of the people who needed this information, wouldn't follow up with it at home.  Maybe they didn't have the support at home, or maybe the support they had didn't understand the importance of being there, or being positive.

All in all, it was a hard 2 hours for me.  At the end while we were walking out, I was feeling very dizzy.  Part of it was because I was hungry, but a lot of it was my angioma kicking my ass a little bit.  You know what, all I wanted was to get out of there as soon as possible.  As far away from there as I could, and it was becoming a race against my tears.  The last thing I wanted to do was be around the Stroke Club, or in the hospital when the water works started flowing.

I felt kind of selfish, but it was a bit more than I could bear at the time. 

I guess she isn't coming home...

... and honestly, it is a feeling I can't explain.  You know I remember people saying, "I wish I had my Mom to talk to..."  and not that I took her for granted, but I remember thinking... yea... but...  I am here to tell you the "yea but..." is very appropriate.  I miss her... a lot.  Mom has lived with us for two years.  Almost to the day as a matter of fact.  It was a lot of work too.  You wouldn't think so, and she didn't think so...this I know for a fact, because she said it on many occasion... (that she didn't realize she was so much work...),  but the responsibility that is not tangible, but none the less there, was very big.

And I think that is part of what is causing that giant hole right now.  That along with the fact that it is not going to be filled for a very long time.  It will have to grow in, like someone cut a hole in my skin, and it would have to heal inward.  I guess there is no sense waiting for this to happen either...  It would be like watching the moon move across the sky through out the month in extra slow motion.  Actually worse.

I can't get angry, in fact if I try, I find myself getting angry at myself first... and that doesn't work...actually makes things worse.  Honestly I don't think my Mom is or was mad at me.  Well maybe she was, actually, she was annoyed more than anything, because she said I never shut up...  Actually I think she was probably right.

I am sad, but it is so hard to explain.  It isn't sad like when one of my pets passed away.  It is different.  I think that is because I can't let this grief run it's course, and then I get another dog or cat.  I feel like this grief will never run it's course.

I don't cry.  I did... the last few days she was in the hospital I cried a lot.  In the car on the way home from the hospital.  I tried not to, but it just happened.

I stopped crying when we took her home on Monday afternoon.  Well not exactly.  I spoke to my cousin on the phone and I cried a lot.  However, when I hung up, and went in to fix dinner, and met the admissions nurse, and received a ton of phone calls.. I stopped crying.  I was very busy, had many decisions to make, things to do... When things slowed down,  and it was time to go to sleep, I went in to say goodnight to Mom, and she looked pretty, and peaceful.  The most peaceful I had seen her since 3 weeks earlier.

At 3:30 AM, my sister came in to my room upstairs, to wake me up.  The Hospice nurse told her that she should go get me, because she believed that Mom had passed.  (My sister was here, and slept on the couch that night)

In fact, I didn't cry when the funeral director came and took her away after she died.  I remember thinking, that isn't my Mom on the stretcher.  That is an elderly lady whose life just ended.  But my Mom...nah.  The funeral director said this was because my Mom was in my heart.

She is in my heart.  Maybe that is why I can't cry.  I do remember I looked at a picture that morning.  I have looked at that picture many times.  It was taken about 23 years ago.  It is a picture of all the Aunts and Uncles, from both sides of the family and my Mom and Dad, at my sisters wedding.  There were a few Aunts and Uncles missing, but most of them were there.  After my Dad passed 5 years ago, I remember being sad when I looked at it... and from that point on, I wouldn't look at my Mom and Dad, just the Aunts and Uncles.  Well, Tuesday morning, when I looked at that picture, I looked at my Mom and Dad, and for the first time I wasn't sad.  I specifically remember not feeling sad.  I was kind of embarrassed by that too... so much so that I didn't say anything.  I called one of my Aunts a few hours later, on the phone, and she said "Well Mom isn't alone anymore, now her and Dad are together."  I have to tell you, I was really taken back when she said that.  Mainly because she validated the feeling I had earlier, but was embarrassed to say out loud.  I am still amazed when I write it now.

See my Mom and Dad didn't have an extended honeymoon, let's say.  In fact, I felt that they were companions in the true sense, most of their marriage.  They were Mom and Dad.  They argued and fought, and got on each others nerves, and probably did not like each other a lot of the time.  But they were together and tolerated each other.  As they got older, it was difficult, with feebleness, and dementia setting in... but despite that, they were a team.  They were my team.  Now the captains of my team are gone, and I am one of the captains of my own team.  Up until a week ago, I was one of the captains of Mom and Dad's team too, by default.  It was a hard job. I guess it is a hard job letting go of the "by default" position that I had.

Maybe that is what I am feeling right now.


http://www.baldwincremation.com/obituaries.php/Mildred-Ripke/677/index#obituary-details

The latest and not so greatest news

So today I decided to take time out to sit down and post on my blog.  I am still going to write about what I have been writing about... just a different venue.

2 weeks ago today my Mom had her surgery.  The surgery that was needed because of multiple trips to the ER that I have blogged about before.  However what was supposed to be a simple surgery, has turned into 14 days in the hospital, and 13 days in ICU. 

What wasn't known to me, and probably for good reason, was that it was real touch and go for a few days there.  However I think they (the nurses) told me and the doctors alluded to it.  Maybe I just didn't hear it.  Anyway, here we are 2 weeks since her surgery, and I am exhausted.  Mom is still pretty sick, but everyday seems to be a little bit better.  It is going very slow, and she has been in ICU all this time, and I have gotten to know the nurses very well.

I have been keeping touch with people by way of Facebook, and e-mail and phone.  Mom doesn't realize of course that 2 weeks have gone by, and a stuff has happened outside of her hospital room.  For instance, her good friend passed away yesterday.  I haven't told her, and I don't think I will till she gets home and settled. 

Another thing is this is not the fault of the mechanics of the surgery.  That went very well.  It seems she contacted a bacteria, and her kidney shut down.  They seem to be working fine now, according to the blood tests, but with her Parkinsons, there are other complications that don't make themselves obvious right away.

So.. I and usually George have been going up to the hospital everyday for the past two weeks.  Twice a day, and between I am fixing dinner, and feeding the dogs, and giving Schatzie her insulin shot twice a day, calling family, trying to get stuff done in the house.  George runs the errands for me while I am at the hospital, and occasionally,  I run them with them because I need some diversion from the hospital.

Right now she still has the intubation tube, and she is not sedated, and it is very uncomfortable for her.  She wants to go home, and I think she thinks I put her in a nursing home.  She can't talk, but that doesn't stop her from talking at length, even though no sounds come out of her mouth, and I can't understand anything she says.  They have her breathing spontaneously even though the tube is there for support, and if she needs help inhaling or exhaling, it is there.  Every day they take her off the ventilator as support, and she is breathing entirely on her own for 1-2 hours.  This is all in an effort to wean her off the ventilator.  She can't have it any longer than Thursday, and even though the nurses are all saying it will be tomorrow, until tomorrow is Thursday, it will not be happening... I know that, even though no one has told me.

So today is the day that I need a break from all this hospital stuff.  So George and I will be going to the Dry Cleaners, pet food store, bank, and maybe.... just maybe... Kohls.

The work will not be over for a long time... because once Mom comes home... the real work will start...

It had been almost a month...

A lot has been happening in the past month. 

I have made two trips to the ER for my Mom.  She is probably going to have surgery very soon.  The good news is that the surgery is not because of disease, but for repair.  Other than that, I won't go into the details.  The bad news is that it is surgery, and at her age, surgery is always a greater risk.  We do trust this Doctor, and this is something that "must" be done, as the ER doctor yesterday confirmed.

Mom is getting more confused, and very sleepy.  She has always been, in her older years anyway, very lethargic.  However, it is noticeably worse lately.  For me it is difficult in two ways.  First to see and admit that my Mom, is now, more a child than ever before.  Even if she doesn't want to admit it.  She still sees her role as a parent, and does not listen to me, since I am the child.  However, she is not able to make decisions for her well being any more.  The problem is she isn't taking it all that graciously from me.  All this is something that I have to learn to adapt to, and... remember that my husband is here as well. 

It really is a balancing act that is new to me.  For those of you who are new to my blog... I moved to Florida from NY, away from my home and my parents in 1987.  That was 24 years ago.  In that time, my younger sister got married, had 3 kids, had marital strife.  My parents retired, saw their youngest daughter get married, became the grand parents to my 3 nieces and nephews.  My Dad had a stroke in 1998, again in 1997, started to suffer from dementia, which was not treated, and his final stroke in 2005.  They moved (everyone, my sister and her family) to North Carolina in 2001, and my Dad passed away in 2006.  George and I were married in 2007, after he had a pretty severe stroke in 2007.  My Mom came to live with us in 2009.  I am not used to being married, and especially not used to balancing all the emotions.

Luckily, or not so lucky, I am disabled from work, and have taken myself off driving, because of an Angioma on my brain stem, that has grown 2 1/2 times it's size in 6 years.  Lucky in the sense that I am able to care for my Mom, myself, my husband and our home, without the stress that comes with a job, especially in this job market.  Unlucky in the sense that my balance, and abilities are compromised.  I am not able to drive confidently, I can't do as much as I could before, because my balance and my vision are severely impaired so I tire easily.

So... that brings me to today... now.  I find myself getting angry at both my Mother and Husband.  I find it to be very justified, 1.  because  of how I feel, 2.  because my Mother is requiring more attention than she did before, and is not very patient with my instructions, or my short temper.  And, 3.   my short temper, which I never had before, is not being taken very well by my Husband, who is reciprocating with the same short temper. 

Doesn't sound like a great place to be right now, does it...  It ain't!

I would love to have a vacation.  A real vacation.  The last 4 years my vacations have been to NY to visit family.  My mother has come with us 3 of those 4 years.  My Aunt and Uncle, ( my Dad's Brother and his wife) would take my Mom for a week, while George and I stay at George's Cousin's house.  It has been a nice escape from the normal routine at home.  This year, I am not sure it is going to happen.  Because of money, and also, because my Mom is not up to where she was in the past, and it wouldn't be fair for my Uncle or Aunt to be responsible for her.

What I would love to do is go on a cruise.  A short 4 or 5 day cruise.  They are relatively cheap from Florida, since we can easily drive to Cape Canaveral and catch a cruise ship.  The problem is my Mom will not get on a cruise ship.  Mainly because of fear.  Fear of it sinking, and her inability to swim, and fear of falling over board.  She seems to be of the notion that people disappear on cruise ships, and that only means on thing.

So in order to go, Mom could stay with my Sister, in North Carolina, in my Mom's home there. My sister won't or can't take a week off, and spend it with my Mom.  (My sister is living in my Mom's home since she split with her husband.)  So, that means that my Mom would be stuck in her house, alone, with out TV, (it is in a very rural area, and in this GREAT country of ours, cable TV is not available in those areas, and my sister does not want to get satellite TV) for approximately 13 or 14 hours a day.  The reason we brought her down to Florida, is because she was doing that 2 years ago.  However, she did have satellite TV then.

So that is my story.  The reason I have not added to my blog recently.  Hopefully that will change soon.  Not sure how that will happen though. 

My mind is working over time to figure this one out...

One step closer...

Well, as I said last week.. I am one step closer to getting on with my life.  I have some goals... like losing some weight, and getting in a regular routine. 

Mathie is still with me, but I can see the decline.  It is amazing... she is like a baby.  She gets tired and cranky, so I bring her upstairs, and lay her down on the guest bed with her for a few minutes and she falls off to sleep for about 3 or 4 hours.  Pretty amazing really.

Here is the whole door!

There it is... who would have thought?

Friday we were going to take Mathie and Schatzie for a walk, and found that the garage door wouldn't open.  Called a repairman, come to fine out the spring (man this was some spring... ) was broken, in fact both springs, so they were replaced.  To the tune of almost $500.00.  UNBELIEVABLE!!!  The good thing is that it has a 5 year guarantee, which is as long as we are in this house.  They were here at 7:40 Saturday AM, and the door was going up by 8:00 AM.

Then a friend took Mom and I to the beauty parlor, for Mom.  Once we got home, George took us to Petsmart to get Schatzies diabetic food, and then home.  After that I was baking and fixing dinner.  I made Cheddar Bay Biscuits... (yes the kind you get at Red Lobster) and Black and White Brownies. Then I made dinner.  Tilapia, yellow rice, and green beans. 

Gave Schatzie her insulin shot, and we were on our way to friends house for game night...Cranium.  All in all in was fun, but we were out till after midnight...and I just can't pull those all nighters anymore.

It also put the quash on any thoughts of a super bowl party at our house.

So... on with the next phase in my life.  I will keep everyone posted.

The Letter Came Yesterday...

Well I got my letter in the mail, and I have been approved for Disability.  I thought that was going to be the big battle, how ever it was the "other" stuff that was a real struggle for me.  Now let me tell you, it wouldn't have in the past, and after 5 hours of struggling with phone calls and computer, and people, I finally decided to sit down and heat up some left overs for dinner, and relax.  But at this point, I was absolutely exhausted.  I hadn't eaten lunch, I was dizzy, I mean real dizzy.  So, it was once again confirmed to me that I  am not capable of going back to work.  I could barely handle this whole mess without having a melt down, and if it wasn't for George coming up stairs and concentrating on the computer, I would probably have thrown the monitor or the key board, and folder that was about 1 inch think with papers across the room. 

In fact just heating up a can of Progresso Chickarina soup was a chore for me.

But, I can say today, that I am a little bit closer to finishing up this mess today... or finishing up as much as I can.

New Doctor...

I went to a new Neurosurgeon on Monday... Dr. Max Medary.  Best thing I ever did.  I am not sure if you remember but the last doctor (Neurosurgeon) made a complete 180 degree turn around when I went to see him.  There are a few reasons why he would have done that: 

1. He is a Neurosurgeon, and unless he is going to operate, they really don't want to see you.  However he was roped, simply by his misfortune, into saying that I was not able to work.
2. He suggested GKS (Gamma Knife Surgery), which is his deal.  However it is not a suggested fix for Cavernous Angioma's.  
3. GKS is an easy $30,000 for a Neurosurgeon.  Let me tell you that even if my application for SS Disability is approved, I wouldn't get half that much money in one year! 

So.... if any of those reasons were the reason for him to make a 180 degree turn around in his opinion, he isn't much of a doctor in my opinion...  But what do I know right?

This doctor said that with the best intentions, anyone who did surgery on me right now would hurt me.  They would cause me to end up with more problems than before the surgery.

So, that is the story.  I so liked this guy, so much so that I am now going to stop any consideration of going to Phoenix to see Dr. Spetzler.

It isn't often that I feel so totally and completely satisfied by a doctor.  As a matter of fact, there are probably only 4 doctors in my lifetime that I could say that about.  The unfortunate part is that one moved to NC, and one retired.  That is not including my dentist by the way.  So I guess you could say 5 doctors.  But that is my entire lifetime.  Believe me I had to kiss a lot of frogs to find those 5. 

However only one of those frogs wanted to point radiation at a spot in my brain, in a very "eloquent" location, just because he didn't want to say I was disabled, or, just because he needed a quick 30 grand, or, especially because he didn't want me coming back.

Someone who reads my blog told me that they had fired a lot of Doctors, who were supposed to be experts or specialists.  I can truly understand that.  I had my doubts that I would ever find someone who looked out for me, and not what the ledger book said at the end of the day. 

Well, on to the next adventure.  Who knows what that will be, or where it will lead me.  Right now I am just glad to have found someone who will care for me if and when the time ever comes that I need a knowledgeable Doctor on my side.  Maybe that day will never come.  That would be the best case scenario.  However, I will not keep my head in the sand about this.

Wesley and Linda Chappetto

This video was taken a few years back.  We had a bunch of friends over, and Wesley managed to get up on the couch, and on Carmela's lap, and behind Linda's head so that he could be scratched, and well basically to be as close to Linda as he could.  He was loving every minute of the attention he was getting too....

Happy New Year...!!

Well I know it has been a while since I posted anything...  A lot has been going on.  Let me start by saying my friend "Girl with a Pearl Size Angioma" sent me a necklace that she made.. which makes it extra special, in return for the buttons for her P-Coat.  I have been wanting George to take a picture of me with it on, and that will still come, as soon as I can.  This holiday has been special, and it has also been sad.  I have made some new friends that I look forward to hearing from, and who I can count on being there when I need an ear, we had a visit from family in NY, and with that came the promising news that "C" might be getting a scholarship to Flagler College for Baseball.  I received a call yesterday that my LTD from my job was approved, so the first part of the puzzle is somewhat solved.  The sad news came on Sunday.  Our dog Wesley (pictured in this post) passed.  It was sudden, and in fact in this picture he already had the the mass that caused him not to be able to breath.  We had taken him to the vet because he wasn't eating, and something wasn't right.  The vet heard a slight heart murmur, and decided to do x-rays... which at first glance didn't show any problem.  Now keep in mind this was the holiday weekend, and for the most part Wesley was doing fine.  Short of not wanting to eat much, he was doing fine.  Until Saturday, and Sunday.  That is when the breathing difficulty started.  So we took him to the emergency vet, and called our vet on his cell phone.  While at the clinic, which at first thought, was under the impression he was having congestive heart failure, which relieved us since that can be addressed with medication for a while before any decisions have to be made, our vet called us back, and immediately called the Doctor on call at the Emerg. Clinic.  Unbeknown to us, he had the x-rays taken two day before looked at by a specialist, and found that there was a huge mass in one of Wesley's lungs, which now had fluid collecting.  Since Wesley was not in any distress at that point, the vet didn't feel if was necessary to ruin our holiday weekend, and he could talk to us on Monday, so we could make a decision. 

At this point, we knew we had to make a decision.  George couldn't stay with Wesley when he was put to sleep.  He went to say goodbye to him in the treatment area, and he just broke down.  It was so sad, and since his stroke, he has very little control over his emotions... and this was one of those times.  So he waited in the car, while I sat with Wesley in the exam room... and talked to him, and hugged him, and cried.  It was very hard, and the thought that we wouldn't be bringing him home that day was hard to handle, even as I write this today. 

The doctor came in and the both of us kept telling Wesley what a good boy he was, until he no longer had any trouble breathing.  Somehow that didn't make it any easier for me to say goodbye.

We had him cremated privately, and he will be in an urn by all the other special members of our family.  That probably sounds weird, and maybe it is... but somehow, it makes me feel better to know that he is still close by.  He will always be in our hearts and minds, and even on this blog.

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