Lisa vs the Garmon

I would like to know why I got a Garmon.  We've been together for less than a month and we already have a love/hate relationship going on.  Garmon loves to screw with me, and I hate Garmon.

For instance, the other day Cassie and I took a special girl to an SPCA volunteer orientation.  On the way back to her apartment, Garmon said "Take this exit.... this exit!!  TAKE IT!!!!" So, I took the exit, got to the end of the ramp, and Garmon said "Make a UTurn".  Well, Cassie and Samantha almost pee-ed themselves.  However, I'm the adult, and I need to make a good example, so I comply with Garmon and do a Uturn.  Do you know that when Garmon tells you to take a U-turn, causing some awesome young ladies to wet themselves in your car, when you say "Ok" and then pull the U-ey, said girls will then start laughing HARDER?

Excuse me, ladies, what is so funny?  I still don't know.  They couldn't breathe let alone talk.  The good news is that we got Sam back to her apartment, and Cassie and I got ourselves home.

Which brings us back to the SPCA Orientation.  So, we stayed.  Oh, and when I say "we", I mean I said "Hey, Cassie!!!  Lets STAY" and she said no.  So we stayed and did the orientation, also.  I found out a few interesting things!!!  You know those really sad commercials that has made it so you can not listen to certain songs anymore because all you see is sad, caged, sickly animals?  Did you know that when you donate money TO that organization that your local SPCA sees NONE of it?  That is correct!!!!  PUBLIC SERVICE ANNOUNCEMENT!!!!  Mostly ALL charities are money makers for a select few, and they are usually NOT the people they are claiming to help.  Do yourself and your community a favor.  If you want to donate to help animals, do it locally.  If you want to donate to the poor, do it locally.  If you want to donate to Autism, do it locally.  If you want to donate to Chiari, click the link on the top of my blog or come to the benefit my mom is throwing for me.  <hehehehe  Shameless Plug>.

I also found out that I'm doing something right!!  Cassie kept saying "I'm not volunteering" and I kept saying "OK".  By the end of the orientation, Cassie had picked up 2 applications and she and Sam decided that we will start by volunteering on Tuesday mornings, and if that goes well, we may add in more days.  <grin>  So, we have now added more to our schooling, resume building, and starting to building empathy for others!!!  I'm following NYS Ed rules, common sense, AND Paul's request to get Cassie to see the world outside herself!!!!!  Yeah, I think I'm getting pretty good at this mom thing.  Not bad since I've been at it almost 26 years, huh?

Dreamland & Nightmares

I love to sleep.  No, really, I love it!!  I like to take naps, I never want to wait until bedtime.  I have this king size bed and get this little 1' sliver all to myself, unless the puppies are over snugly, then I get pushed out of the bed, but even so,  I just love to sleep!!  And dreaming is fun, too.  Except the nightmares.

Not my Uncle Lee's painting,
But just as creepy.

When I was young, my standard nightmare was a GIANT Uncle Sam pulling a Godzilla in CNY and separating me from my family.  We blame the Uncle Sam on a huge and demented painting my Uncle did that was left facing the room and bed I used when visiting my Grandmother Wratten.  But, without fail, that would be the go to nightmare guy.

The scariest dinosaur in the world!!

Then an ex-boyfriend of mine took me to see Jurassic Park.  This wasn't one of the reasons he is now an EX, but it should be.  Come ON, Germy!!!!  What would possess you to take someone of such a sweet disposition and quick terror to see a movie where animals eat people?  From that moment on, Uncle Sam was replaced by a Velociraptor.  Man, those things would pop up everywhere, and unexpectedly!!!!  End up at school, naked, late for a test for a class you didn't even know you were taking, get in to the testing area, VELOCIRAPTOR!!"  Car goes over a bridge, into the water, you start to try to escape, and next to you is a velociraptor!!!  If I had a dream that would get a little steamy, next thing you know, POUNCED ON BY A VELOCIRAPTOR!!!!  Really makes you wonder why I like sleeping so much, huh?

Queen Elizabeth comes
to me in my dreams often.
We are Friends.

But then I became a full fledged adult, with grown children, and adult worries.  That was when my nightmares took on new theme.  Gone went the days of Godzilla as Uncle Sam.  Bye Bye Velociraptor!  Now we have a new theme...  Its Christmas Eve, the stores are closed, and I just realized I have no presents for anyone to put under the tree.  Yep, have no clue where the stockings and the tree are, and there are no sugar plums to be seen.  We do have the occasional twist to the theme...  I just had a baby, we are very excited, I realized I hadn't feed the baby since I brought it home from the hospital, actually, I haven't seen it in a while, where did it go?!!?!  BUT WAIT!!!  Its Christmas Eve and the stores are closed and I have no presents!!!!!    Or, I'm outside the Big Ben in England having a smoke with Queen Elizabeth, laughing about how we have the same name but I don't have a crown and she does.  She laughs and say's she'll give me one tomorrow, on Christmas morning and all the stores are closed and I have no presents for anyone for under the tree!!!!!

What Velociraptors look like
while Guarding Flocks of
Sheep in London

Heard of Sheep on a London Bridge

Please understand I very rarely ever take heavy drugs.  I don't like the way they make me feel.  Even worse, if these are my normal dreams, I'm afraid of what will happen with the help of pharmaceuticals.  I can see it now.  Uncle Sam & Queen Elizabeth will be standing in front of Big Ben, teasing me with cigarettes.  Then I realize its not ME they are teasing... they are giving treats to the velociraptors who are guarding all my 100,000 children that I forgot I had.  I start to panic, wondering how I'll get Christmas presents for all of them, let alone remember their names.  Remember their names?  Hell, I don't remember even meeting them!! As a few of them (and they look a lot like sheep) get away from the heard, they start to jump in the river.  I go in after them, because they are my children and I need the wool to spin for a competition I'm in the next day, which is Christmas.  As I go over, I wonder what the hell you give 100,000 sheep for Christmas anyways.  Not that it matters, the stores are closed.  Now I'm wondering what is more disturbing.  My actual dreams or the ones I make up as an example of why I don't like to take hard drugs?

Words of Wisdom

I needed a picture for my blog,
so I added this one.
I want this as my next tat!!!

I'm sorry if your are tired of hearing about my illnesses, but I find I must blog about it once again.  But, trust me, its more than me whining.  Chiari is a rare and mis-understood illness.  So, I've joined a group of people, we call ourselves Chiarians (Key are ee ans).  I hope we dont have a secret handshake, because nobody has taught it to me.  Recently, we have lost another of our brethren.  We call them Chiari Angels.  Many Chiarians have gone to the Lord before this one, but this is a special story, and its making its rounds.  You can read about it here:  Mother receives kidney after son's death.  In the comments you can see from the mother's comments that her son died during surgery.  The one who went before that, beautiful lady, I forget her age, I couldn't find out exactly what she died of. Most usually its from sleep apnea, coronary problems, or strokes.  I've known from the get-go of this diagnosis that death can be involved.  I've just decided that wasn't an option.  So why do I bring it up?

Another beautiful Chiarian in my favorite Facebook
group posted this: "With all the "chiari angel" posts it makes me nervous. I'm 22 and just had my decompression. Am I going to die?"

This broke my heart.  I'm 46.  I can NOT imagine going through this at 22.  I had to reply.  I told her,  "Oh, Honey, we will all die sometime. We might get hit by a beer truck, we might be in another 9/11, or we might die of real rough sex when we are 90, but we will all die. Yes, it might be from complications from the Chiari. We can not walk around worrying about it, but instead must life life the the fullest. I'd rather die doing something fun than sitting home, longing for life."

I'm so glad she doesn't know me.  She'd be sitting there hollering "HYPOCRITE!!!!"  But I am getting so much more life-grabbing than I have been in the past few months!!  Yesterday, I even went to a Craft Store all by myself!!  Hey, it may not be YOUR idea of living life to its fullest, but my life has always been a bit odd!  Its all good.  I like it like that!

Canning Corn with my Mom

So, the other day I took the trek to visit my mom and help her with some canning.  If you aren't familiar with the term "Canning", it means taking produce in the summer and putting it in jars to eat in the winter.  And this is where the first issue comes into play.  Why do they calling "Canning" when you are putting the stuff in glass jars and not in cans?  Well, Cassie and I are starting a grass roots movement to change the term to "Jarring".  We'll keep you posted on how that goes.

Are you preparing corn
or are you happy to see me?  heheh

ANYWAYS, my trek served a few purposes, which is good because to feel normal, I must multi-task.  I got to visit with my Mom alone.  We both like that, and it happens so rarely.  She got some help with some of her work, and she got to see that I'm still fine and kicking.  She said it was so I would feel useful.  Heck, even on my most useless days, Pitman will tell you I'm STILL more productive than most people he knows!!!  Every once in a while we need to spend some time with our Mom's so they know we still love them.  BUT, it was worth it.  We had a LOT of fun!!!

Bowl of corn.

I was afraid I'd be walking into a 27 bushel job... but she actually behaved herself, and it wasn't that many!  So, we sat outside and shucked the corn.  Then we went inside and cut the kernels off the cob.  I was really not looking forward to this part, but she got me a stool so I could sit high enough as not to make it hurt, AND she gave me a really sharp knife that cut the kernels off like slicing soft butter!!  Oh, and if you haven't done this before, the tip is to keep the stem on the bottom of the cob and stick it in a bundt pan.  Check out the pictures.  Then we had to put the corn in the jars (notice we put them in JARS, not CANS), covered in hot water, and put them in the pressure cooker.  Now, we didn't have enough jars, so she did end up putting some in the freezer.

CHILI!!!!!

I learned a lot that day.  First of all, its a lot easier just to freeze the corn.  But I can see where Mom is coming from.  She wants to keep room in the freezer for other stuff.  Second, the best part of helping Mom with stuff is that she feeds you!!!  I got chili for lunch!!!  AND some to take home!!  Chili isn't something I get very often, and when I do, its usually from my Mom!!  The third thing I learned is that "jarring" and putting up summer produce IS a lot more fun when you do it with someone else.

JARRED Corn!

I also learned that its hard work keeping "Favorite Child Status".  After spending the day with my mother, I have to admit I'm afraid of losing that designation.  I watched her and listened closely to her, and I'm afraid I might be being replaced.  See, she has this new dog who is outspoken, demanding, full of personality and cute as hell.  Yes, Lucy is a LOT like me, and I think I may have to step up my game a bit.  After all, Mom hasn't rubbed my tummy like she was rubbing Lucy's in quite some time.....

This is Lucy, and the reason
I feel my status in my
family is threatened. 

How Was My Day? SERIOUS?!?!

Whew!  I'm so glad today is over.  I knew I had a lot of running around to do, even to some new places I'd never been.  I wasn't worried.  I have....  wait for it....  MY NEW GARMIN!!!!  I'll never get lost again!!!  I've had it for 6 days, and I'm already confident it will get me ANYWHERE!!!!

Yep.  I can go anywhere and not get lost.  Ever again.

Liar.

See, I needed to go to 1001 W Fayette Street, suite 5B for some stupid mandatory meeting because Cassie has been labeled as a person with a disability.  They needed to pile 1,000 people into a tiny little room with no air conditioning to tell us that because we/our children/our next door neighbor has been deemed a person with a disability, we have a right to services.  Those services are based on individual need and they couldn't go into specifics today, but we had to go to be told this.

Anyways, I put the address in my Garmin and take off.  There was NO building at 1001 E Fayette Street.  I called Robert in a panic, and I made him look it up on his smart phone.  It was 1001 WEST Fayette Street.  I went to put it in my Garmin, and guess what?  IT BROUGHT UP EAST AGAIN!!!  I'm getting close to being late, but my Garmin said I can still make it.  I finally got it to go to WEST Fayette St, and headed completely across the City of Syracuse.  And found 1005 W. Fayette Street.  I gave up and parked there.  Wandered around and found it....  about a block away from where I parked.  (Please look up past blogs to see how well I walk long distances....)  Even though I was barely on time, I was so happy that I found the place!!!  I walked straight to the elevator.  There were two other women with me.  I needed the 5th floor.  I pressed the button.  The woman who came in before me pressed the 4th button.  The lady who came in after me needed the 5th floor, too.  And there we stood.  And waited.  And pressed more buttons and after I got violent with the "Close Door" button, they realized it was broken.  <sigh>  Only thing left to do.

I have 14 stairs that lead from my living room to my bedroom.  I can't make it up there without resting.  I'm not listing the symptoms, but its not happy.  Five flights.  FIVE QUACK-EN FLIGHTS OF STAIRS!!!  No, I didn't count them, so I dont know how many steps in a flight.  I only know that it took me 15 minutes.  FIFTEEN QUACK-EN MINUTES!!!!!

BUT THE GOOD NEWS!!!!  I got to spend 15 LESS minutes in the sauna being told that they are changing the way they are getting services to disabled people, but they aren't sure HOW different it will be and that we probably wont even notice there is a difference since we are all fairly new to the process, which is why we were there today.  <sigh>   When I was done, an hour and 10 minutes earlier than expected, the elevator was fixed, so I got to ride down, walk the block and a half to my car.

With an hour and 1/2 to kill until my next appointment, and no place to take a nap, I did what anyone would expect me to do.  I went and got an ice cream.  AND I didn't get one for my Garmin.  Maybe next time Garmin will behave herself.  Oh, and Garmin, its pronounced JAMESville, not Jam -ES-ville!  Keep this crap up and you are going back!!!

How to handle a rough week.

To recuperate,
eat a picnic lunch!!!

Cassie was blessed with the opportunity to go to camp this week.  She had to be at the bus at 8am, and got back usually about 4:30pm.  With this was some pros and some cons.  Because this camp is mostly "normal" kids, Cassie had her own helper.  Her name is Angela.  Her cousin, Rochelle, is also a "helper" who rode the bus.  They both like Pretty Little Liars.  Cassie was in heaven!!!!

Cassie did drama, dance, arts & crafts, swimming, and canoeing.  Hopefully I'll be able to share a video of their production of "West Side Story", where Cassie had 2 speaking lines  ("Maria" and "We all work around here") and the most difficult role o her life so far.  Whats that?  She had to carry off a "dead body" without giggling.  Did she succeed?  I don't know!!!  They haven't posted the video yet!!!!!

Sit quietly and draw!!

All this fun, however, has taken a HUGE toll on our Little Miss.  Even happy times like this are stressful to my Auties.  Yes, its fun, but its also different, a lot of work to practice our social skills, and its a change to the routine.  I am so proud of Cassie for making it through the week, even if it got a little rough around Wednesday morning until the end of the week.  So, how is she doing?

Or just dance and sing!!

She spent a few hours with her friend, the TV, spent another few hours upstairs in her room and in the shower, followed by some basement and a LOT of outside time.  Then she broke for lunch with her TV friend, and now she's back in the basement.  All in all, she is doing what she has to do to bring herself back to her normal.  We can learn a lot from Cassie.

If you have a very bad, or even a very good week, don't bother with anything but recuperation!!  Do the stuff that makes you happy!!  Put on your radio and dance and sing!!!  Go sit on your swing set and do some day dreaming!!!  And when you think of all the stuff that needs to be done, about that load of laundry in the washer, take a page from Cassie's book.  "I'll do it later, Mom.....  its NOT going ANYWHERE!!"  You gotta love that kid!

Turning Things Around

Finished eating and waiting for the rain to stop!

I've spent my whole life waiting.  It really hasn't done me any good.  Remember, in the blink of an eye, things can change.  So, I got to thinking.  What if, instead of just knocking me on my butt, my Chiari/CCI/EDS trio killed me?  Hey, its possible.  It has happened to some before me, but I dont like to mention that too much.  It scares too many family members.  HOWEVER, I got to thinking about what would be thought of and remembered.  "She was really good at stupid computer games."  "She had a way of making us laugh."  "She loved us, but she really didn't like to do anything".  Well, now, THAT wont work for me!  Yes, they are nice things, but is it really what I want to be remembered for?  Well, I decided to change things.

You can't see it, but its pouring.
But I wanted you to see what we watched for over an hour....

Robert was offered free tickets to a local "minors" baseball game.  I usually tell them to go without me.  This time I went and showed Rob and Cassie what baseball games should be like!!!!  So, first we got food and headed to the stands.  Please keep in mind, there are stairs.  I thought I was going to die, but I didn't!!  We sat in the rain eating our food staring at a covered field for about an hour.  Then they uncovered the field, the rain stopped, and I explained to Cassie what the programs were for.

First of all, I told her, "See this place with all the boxed?  It has Name and then boxes numbered 1-10?  You write the player's name there.... and then you rate them on how cute they are by putting an "X" in the proper number."  From there it only got better.  Oh, and I think the other team's hometown heard Pitman when he laughed at that one.

There was a few really scary parts, like when the one batter from the other team tried to kill me with a foul ball.  Rob was no use.  I ducked, he yelled "GO GET IT!!!"  and I just looked at him.

It stopped raining and we got to see 3 innings!!

I didn't care for the pitcher for the other team, but I got used to his style.  "Ok, Cassie....  now he lays the egg, brings it up to his face, hiding it from the batter, and sniffs it........  then he THROWS IT AT THE BATTER!!!"     I have to admit, it was a very joyous 3 hours, even if we only got to see 3 innings.  And it was very educational!!  For instance, did you know that Dippin Dots closes at the NBT Alliance Stadium after the 1st inning?  Neither did I.  I still owe Cassie some Dippin Dots.  And when she gets them, I'll bring up the baseball game, and we'll be able to remember the whole night all over again!!!

I'm thinking I like this new leaf I've turned over.  Even if I can barely move today.  Yeah, it was worth it.  I wonder what our next adventure will be!

I like swing sets
my butt will fit on.

Oh, PS...  I know it doesn't fit in, but my Mom wanted me to post this picture here of when I was healthy.  This is also how I want to be remembered.  Even as I sit here now, with my body less than happy, this is the person I feel like I still am.  The fun loving dork who'll do anything on the spur of the moment and embrace any adventure that comes her way!!

Happy Anniversary Baby, got you on my mind....

Our Wedding Day
and First Family Photo

Today we are celebrating our 14th wedding anniversary.  I have a lot to say on the matter, mostly "Holy CRAP!!  That's a long time!!"  May of you may not think its that long.  Considering Cassie is 13, and it seems like just yesterday that she was born, maybe its not that long.  However, if you've ever lived with Pitman, or if you are Pitman living with me...  trust me, its a LONG time!!!  I'm watching all sorts of relationships fall apart around us, and its hurts.  These people seemed a LOT happier than Pitman and I, and yet we are still going strong.  Why?  Pitman is too stubborn to leave.

Serious.  I've told him to leave a few times... he said no.  Many times through out our relationship and marriage, I've told him I'm done.  He said he wasn't.  Do you know how hard it is to be married to a selfish, pigheaded, stubborn narcissist?  What makes it easier is to find out there is a reason WHY he is that way.  Things really have changed since he was diagnosed with Autism.  No, its not an excuse, just an explanation.  Trust me, he gets away with nothing.  But something else the diagnosis has done is allowed me to be even more blunt with him.  (Yeah, I didn't think that was possible, either!)  I can not play games.  If I don't like something, I have do deal or tell him I don't like it.  We are still working on him not being afraid to tell me when he doesn't like something I say or do.  He's coming around and doing great, though!!  I may be a bit of a bitch and on occasion can possible be a little wrong....  and he's learning its ok to tell me that.

Robert & I when I finally graduated College

CONFESSION!!!  I'm not the easiest person to live with.  I have suffered from depression and control issues my whole life.  Pitman was warned, and accepted me for who I was.  In the past few years, we've added anxiety, a touch of OCD, and the beginnings of agoraphobia.  I pick fights to keep from having to go places.  He ignores them and makes me go.  Pitman has dealt with this for years and accepted me for who I became.  He doesn't like it and fights me tooth and nail, but that's what I need, and he still didn't leave.  He may have made some mistakes in this time, and I told him to leave, repeatedly, and he didn't.

Now we are going through another huge issue.  My new diagnoses of Chiari Malformation, Cervical Cranial Instability, and Ehlers-Danlos Syndrome.  As I've posted in the past, I'm looking at brain surgery.  (shameless plug..  if you'd like to contribute or share the fundraising link, please click here:  Brain Surgery Fundraiser )  The symptoms that go with these things are debilitating.  I wont go into details, because I only whine to Pitman.  Why?  I feel safe with him.  I can tell him anything, and he'll either hold me while I cry or he'll say something that'll make me laugh.  He'll get me through this.  He's gotten me through a lot.  He's a big dorky guy, an "Arrogant Mama's Boy Jock", he lifts things up and puts them down, and he's honest to a fault.  But he's mine.

The day I introduced Rob to Kayaking...
Something we need to do more of!!!

We don't have romance.  We don't have many adventurous outings.  We don't really seem to have the warm fuzzies most couples do.  What we have is what I wish other couples could have.  The ability to be honest, even if it hurts the other.  The ability to say "that hurts me", AND have the other person realize how important it is not to do it again.   When we are together, there are no egos.  I'm a bitch, he's an asshole, and we are ok with that.  We aren't perfect, but apparently we are perfect for each other.

Happy Anniversary, Rob.  I do love you.  Please continue to ignore me when I tell you to leave.