"You Need to Consider Counseling"

There are a few things I have heard all my life.  One is "Not everyone is going to like you", my Mother would tell me regularly.  Seriously, I believe it, but I just don't understand it!!  I'm a freakin' SWEETHEART who is just desperate enough to do anything to get people to like me!!!  But, even still, there are some fools out there who simply do not like me.  Another is "You need to learn to relax."  I can't say I believe this or not, because I just can't comprehend what the word "relax" means.  Sit and do nothing?  Complete waste of time.  OH, that reminds me of the time I was kicked out of a stress management workshop.  They were talking about taking long walks in the woods and collecting leaves.  I simply asked what they did with the leaves when they were done, and the instructor said to throw them away.  When I pointed out the fact that I found that task would be a complete waste of time, I was asked to leave.  (I know, I'm simply misunderstood.)

Another very common occurrence is to be told I should seek counseling.  I never thought my drug dealer would tell me that, though.  But, alas, it happened at my last appointment.  Lets get something straight...  I don't actually HAVE a drug dealer in the form of some dude on a street corner in a seedy neighborhood where I pull over to the side of the curb like on TV and he appears at my window.  My drug dealer is my "Pain Management and Rehabilitation Doctor".  People with chronic pain disease processes need to add this doctor into their team.  Why?  Because, darn it, Ehler's Danlos Syndrome (EDS) hurts!!!  Its NOT Multiple Sclerosis, Fibromialgia, Rheumatoid Arthritis, or the like, but it is just as painful as those conditions.  So we get management or therapeutic drugs to help us cope.  In some states, I'd be allowed medical marijuana, too!!  But, I'm in NYS so I don't.  But I really dont want it.  I'm still trying to lose weight.  I have 15 more pounds to go, and with all my "medications", its not easy.  Why would I want to add a constant case of the munchies to it?  Oh, and I'm afraid of drug addiction, so I don't have any of the good stuff around that would make people want to rip me off and sell my stuff on the street.  Nah, the most "whipee" of my drugs is a muscle relaxer that is not addictive, but if you read the side effects wrong, you think your tongue can get dizzy.

Once again, I went off on a tangent.  My drug dealer has suggested that I seek counseling from a doctor who specializes in chronic disease processes.  Why?  As he put it, I am a fairly young lady who was living a full and active life, and that was quickly taken from me and it appears to be depressing me.  Do NOT get me wrong.  I love this man.  He is a sweetheart and really seems to get EDS and how this "rare condition" is affecting me.  And he's right.  See, if you are born with certain diseases, or if you have pain from various conditions all your life, then you are relatively used to it.  Its always been that way.  But to have a sudden onset of this crap is completely different, and there is a grieving process I need to go through and I need to relearn to love life differently.  WOAH!  That is some deep stuff.  Deep, philosophical stuff.  Then I remembered a time in my life when I was very interested in deep philosophical stuff.  That was when I was in college!!!!  Oh, and when I was in college, I smoked marijuana, and had even MORE deep, philosophical conversations about really, REALLY important things...  like if the Band got paid to do a gig, did they split the profits, or did it go into a single account to get them to the other gigs.....  No body would answer me, and you know who you are, and this and other questions have been kept alive in my every inquisitive mind all these years. 

And off on another tangent.  It truly isn't easy to loose your mind like this, but its quite enjoyable to try to keep up with me!  So, late in life loss of vibrancy.  To counsel or not to counsel.  To grieve, perchance to see?  Whether tis nobler to suffer the slings and arrows of outrageous what-evers?  Is it truly to love and to have lost, then to have never had loved at all?  And in what states is Medical Marijuana legal?  And since I love to add photos to my blogs, please enjoy this picture of a bacon turtle burger. 

I Am THE Liaison.

Most of my day to day life entails be being the "Go Between" or the Translator between Cassie and Rob, between Cassie and the world, between Rob and the world, between Marley and Spetch, between Marley and Roscoe, etc.  I have decided I liked the ring of Liaison instead.  It has a very professional sounding ring to it, don't you think?  I like it better than referee, even though I do break up a LOT of fights.  This is the one area of my job that is my least favorite.  I love hanging with Cassie, and I love hanging with Rob, but if I have to hang with both at the same time, I'd rather hang myself.  Until yesterday.

Cassie, Rob & the "Gator Boys"!

As Rob was getting ready to come home from Manhattan, I saw a TV advertisement for the Big East Camper and Outdoor Sportsman Show.  WOW!!!  I LOVE camping and the outdoors!  So does Rob!!  AND there would be hunting and fishing and other stuff Robert loves!!!  And then there is Cassie.  Well, you've all heard me talk about Cassie's "Special Interest" revolving around Disney Teen and other Teen dramas, but she is also very into "The Gator Boys".  The Gator Boys are a group of people in the Everglades of Florida who do alligator rescue, education and wrestling.  You can watch them on Animal Planet, and its a very family friendly show.  Cassie really loves it when Ashley (Rob's favorite) and Sarah (the girlfriend of Jimmy Riffle, one of the leads) get to work with the "gators".  Where is this going?  They were AT the Big East Camper and Outdoor Sportsman Show at the Turning Stone Casino!!!!  We got to meet Jimmy, his brother Andy, the young kid Scott, Rich, and Curtis, who is from the Mississippi Gulf Coast Gators!  After hearing they were going to be there, Cassie was very on board with us having a FAMILY OUTING!!!  Oh, and if the guys weren't a big enough draw for her, Sarah was selling t-shirts at their merchandising table!! 

Cassie & Sarah

I probably, if I really racked my brains, MIGHT be able to come up with a handful of times that Robert and Cassie were both happy doing the same exact thing.  Amusement Parks, Disney Vacations, the idea of going to California to meet Rob's sister Sandy & her family, go playing mini-golf, etc.  It is a very rare occurrence, though, that I can spend the day and not have to bargain with at least one of them at all times.  It was a vacation for me!!  I'm not sure they understand that the one way to make me happy is for THEM to be happy at the same time!  Why?  Just because for a few hours, at least, my life is made easy.  It was a magical day. 

 

Oh, and I even saw a "Porkapine" for the first time ever!!!  I didn't realize how BIG they were!!!!  Yes, it was an amazing day of firsts!!!!

An Unexpected Road Sign on My Stroll Down Memory Lane....

I am diligently working on getting millions of pictures, most I do not even remember taking, scanned into my computer.  This has been a very interesting stroll down the proverbial memory lane, because there is no rhyme or reason to the sequence I'm coming across them.  Except this box I'm doing now.  See, I did try to become organized at one point and time and actually put pictures in almost time sequence, in photo shoe-type boxes, with labels!!!  This has freed my mind up to continue with this very mind numbing process.

Which gives my mind lots of time to think, when I'm not trying to figure out which baby this is in the picture by looking at the surroundings.

Mystery Baby #1

First, when I was growing up, I would ask my mom who were in old pictures.  It really amazed me that she could tell all these babies apart, just by looking at them!!!  Hell, all the bald Mr. Magoos look alike to me, INCLUDING my own children!!  (Once again, I have NEVER claimed to be a good mother.)  Somewhere, before I finished my first box of photos, I realized that I had the same gift my mother did!!!!  I know how to FAKE IT now!!!! Take Mystery Baby #1 pictured to the right.  I can look at the head garter the baby is wearing,  the chair the baby is sacked out in, with the white column in the background, and BAM!!!  This is LeeAnne!!!! 

Mystery Baby #2

Now, Mystery Baby #2, is on a blanket with red piping.  The beautiful wall paper in this kitchen, that has scarred me for life, shows that this is the Clayville house, where Mystery Baby #1 was also photographed.  Also, my mother is in the picture, and she doesn't appear to be heckling me, so she must be helping me.  So, I can deduce that this baby is my Steve.

Mystery Baby #3

So, Mystery Baby #3, it could be tricky to some, but I've gotten good at this.  The material of the seat is cloth, and I'm wearing a TShirt commemorating Tony Stewart racing in the Coca-Cola 600 and the Indy 500 in the same day.  BINGO!!!!  Must be Cassie, who was born later that year!!!  See?  I'm a natural!!!
both

The second thing I realized is that I feel sorry for my ex-husband.  I have never considered that before.  I have loved the man, disliked him, feared him, hated him, laughed at him, but I never felt sorry for him.  But its true.  I'm watching my children growing up AGAIN through these pictures.  Now, even if I sent them all to him, he could see them growing up, but he wouldn't be able to know the FEELINGS behind Steve in front of the Christmas tree in his suit going to the Christmas Ball, or LeeAnne sitting on a rock & playing pool on a Youth Group trip.  Or either of them at their graduation.  I really couldn't imagine missing out on ever the smallest memories.  Decorating Christmas cookies, fooling around with cousins, playing with your baby sister, racing Slinky's down the staircase, carving pumpkins, birthday parties.  I truly hope he was able to enjoy those moments with his step daughters, as Rob enjoyed all three of our kids.  

Halloween 2000

The third thing I'd like to reveal is that I think I may have a problem.  I never really thought of myself as a shutter bug, but there are definitely FAR too many pictures of my kids!!!!  I swear that the first kid that whines that I didn't take as many pictures of them as I did their siblings will have an entire Facebook Photo Album dedicated to their worst photogenic moments!  Tomorrow I will open up the 2nd labeled shoe box, scan another 300 photos, and relive another 2 years of memories.  As  do it, I'll continue thanking the Lord for all he has given me through the years.  I truly have been blessed.

Domestic Terrorist in CNY

I'm certain there are domestic terrorists alive and well in CNY.  Their name?  POTHOLES.

They strike when you least expect it.  They try to eat your car.  They jar your whole body, causing whiplash and excruciating head pain.  They also cause you to say bad words.  Really bad words.  Words that start with F and make your mammas cry.  They lay there, being all "hey!  I'm a road, drive on me!" then

WHAM!

ouch!!!

My poor little car.  OOla never has done ANYTHING to these, these, these MEANIES!!!! 

I'm too angry to continue to blog tonight.  Tomorrow, when I'm more rested and the pulse banging out the beat of a new dance mix drops to a more tolerable level, I will call the first public meeting of CAVEP  (Citizens Against Vehicle Eating Potholes).  Some one bring the refreshments.  I think Cuppy Cakes would be a good choice.

Oh Man!! Me and My Projects!!

I have a problem.  And addiction of sorts.  I like projects.  I like projects, challenges, and trying to master the impossible.  My Mother once told my ex that the fastest way to get me to do something is to tell me I can't do it.  Well, THAT backfired, because I may be a bit of a hard head, but I'm not stupid!

Steve has always been quite the artist!

Why is this a problem?  Well, when I get into a project, I forget to do other things.  That includes eat, sleep, and go to the bathroom.  When I was not yet a Mom, it was cool!!!  Yes, it was embarrassing to call the ER at 3:30 in the morning to ask the procedure for freeing my fingers that I had accidentally super glued together, but it was still cool.  Now that I'm a Mom, though, I have to watch it.  My habit of immersing myself in a project needs to be monitored.

See, somehow, in my 46 years of life, I have amassed 8 boxes of photographs.  Some I haven't seen in about 20 years.  I am taking these pictures and scanning them into electronic media.  There is one box that the outside is severely damaged due to the fact I've lived in some places that didn't have the best places to store things.  I'm hoping I haven't lost all the memories in that box.  Heck, its so old I'm hoping I actually remember the memories hiding in that box! 

And LeeAnne has her way with words!

I finished the first box yesterday and found some interesting things that weren't photos.  Old report cards of my older kids, LeeAnne's writing journals from elementary school and a $50 savings bond, a whole newspaper that I actually read through to see if I could figure out why I saved it (I couldn't figure that out), a few things from Steve's schooling past that says he loves me because I feed him, as well as a little booklet about his pet penguin. 

But I also found a few things I don't know what to do with.  I have 2 butt ugly pictures of my ex-husband, both from when we weren't even together!  I have no clue how these even came into my possession!!  I also found some pictures of a very happy time in my past, but the other couple has recently separated, and its not a happy break up.  Then there are all the blurry trees, sunsets on the lake, and campfires of unidentifiable timelines that look just like every other blurry tree, sunset on the lake, and campfire.  Oh, and a piece of Korean currency, a $2 bill, and 3 baseball cards.

Misc. Surprises

Yes, that was all in the first box.  Today I will START box #2, but I'll do things differently.  I will drink water.  I will potty regularly.  I will continue NOT eating, unless it is meal time, 'cause not snacking is a good thing.  I will do school with Cassie, because I can't do 2 weeks worth of "Utilizing computer hard and soft ware for a photography project" and expect the state not to question me.  Ok, so lets get going!!!!

Oh, and by the way, the ER laughed at me when I asked them, and they nicely told me that fingernail polish remover would do the trick, and if I didn't have any that I could come in and they'd help me out.  I think they just wanted to laugh at me in person.

And she is STILL Autistic....

I got a HUGE reminder of the fact that Cassie is on the Autism Spectrum.  No matter how much I acknowledge this, I still get these reminders.  Sometimes they make me sad.  Sometimes they make me feel like I'm simply a bad parent.  Sometimes they make me feel like my child has some sort of death sentence.  And then we have mornings like today.  When they just make me laugh and enjoy my child.  Every "Autie" has a special interest (SI).  Rob's is sports.  I know of a 6 y/o who's SI is zombies, a 16 y/o has Scoobie Doo, a 10 y/o has numbers and colors, and our 47 y/o Autism Consultant's special interest is actually Autism.  Cassie?  Its complicated.  It started with teen Disney Channel shows and it has increased from there.  One of her shows is Pretty Little Liars.  She can tell you anything about the show, the characters, the actors, the creator, and the producer.  And their families and animals, especially dogs.  The more into the show, the more background on everything, including the location where it is shot and the props that are used.  Before you read the rest of this, please remember that this is a 13 1/2 year old.  She is NOT 8 years old, at least not chronologically. 

So this morning, the cast of Pretty Little Liars (PLL) were "Taking Over Good Morning America".  Well, they had a 3 minute interview spot that started at 8:38.  Cassie woke up, and woke me up, before 7am so we would be sure NOT to miss the show.  Do you realize exactly how long one hour and 38 minutes are?  Well, I dont think you do.  One hour and 38 minutes is actually two and a half days long.  Two and a half days worth of  GMA announching that they are "Coming up" and seven commercials for every little segment they do.

The Girls from Pretty Little Liars

Unable to fast forward through the commercials, Cassie was flopping herself around the living room hollering, "BUT THEY JUST HAD A COMMERCIAL!!!!! MOM!!!! ENTERTAIN ME!!! AHHHHHHH!!!!"  Then she paused the TV and waiting for a while, then fast forwarded it to the next segment.  More flopping, sighing, giggling "MAAAMMMAAAAAA!!!!  PPPLLLLEEEEAASEEEE  make them STOP!!!!" and she pauses it again.  Fast forward again.  "MMOOOMMYYYY  Lets talk!!!"  Ok, Cassie, what do you want to talk about.  "About how this is STUUPPPIIIDDD!!!!"  Do you realize how hard it was not to laugh at her when she came out with "THEY KEEP MESSING WITH MY MIND!!!! Mother!!! Call them and tell them to STOP messing with my MIND!!!!"

My Beautiful Little NON-Liar!!

I was truly ready to help her pick up the pieces of disappointment and anger over the fact that she got to see the cast for a total of 3 minutes.  But it never came.  She was insanely happy when it was over.  To her, it was almost like the anticipation of leaving for Disney, and after 3 minutes of an interview, she returned from Disney happy and refreshed, and ready for the next vacation!!!   

This is also why I'm a little jealous of my Auties.   Can you imagine how wondrous
life would be if we could all experience a magical Disney type vacation in just one hour and 41 minutes?

Happy St. Patricks Day!!!!

Me & My Crazy Hat

Yes, I love St. Patricks Day!!!  I have never celebrated it as a falling down drunk fest.  I celebrate it as being proud of my heritage.  I am mainly a mix of Irish, and Scottish Welsh.  I've also found out that Chiari is more prominent with the celtic race.  Yes, its not just a nationality, it is a race.  I am so tempted to start writing in Irish when forms ask me what my race is.  My nationality is American, but they never ask me that.  Here's a question for you....  if they want us to all be color blind and not notice any ones race, sex, or gender, why do they keep asking those questions on every freakin' form I see?  But, again, I got distracted.  I must push forward, because there is a point here.



Please remember I homeschool and we had a blast with today's celebration!!  We made these little "LUCK" booklets.  You open the "L", and you can see stuff about the why and how we celebrate (never once mentioning over-usage of ale), you lift the U page and see stuff on the "C" page.  Well, on the "K" page, it asks a question.  "What makes you feel lucky".  WOW!!!!  I'm used to writing why I'm thankful at Thanksgiving, what I want for Christmas, and even love poems for Valentines Day.  Never thought of being LUCKY on St. Patricks Day!!  After I thought about it, I had to put down that I feel lucky every time I look at my handsome husband and 3 wonderful children!!

My "LUCK" book!!!!

So, I pose that question to you.  What makes you feel lucky?

The Rising of the Phoenix

I LOVE these!!

Yes, it's been a while.  There are many reasons why.  Excuses are like assholes...  everyone's got them, and nobody wants to see them.  The same can be said for regrets, mistakes, opinions, and bowel movements.  Wait!  I have to amend that.  We do like to see peoples mistakes.  Especially ones made of food and posted to social media with the sarcastic words:  "NAILED IT!!!" 

If you are new to me, read the back posts.  I will let you know that my brain surgery scheduled for January was put on hold.  I will eventually need it, but I didn't in January.  Why?  The gastric by-pass surgery did help with some of my issues, and Dr. Henderson wants to see if Physical Therapy, with an EXTREMELY talented expert in connective tissue disorders can push out the point of needing surgery.  What I have learned in the past few months has really thrown me for a loop.  I will never get better.  I will never be healed.  I will never, ever, be allowed to climb a ladder, or carry things up and down stairs.  After my fusion and decompression surgery, I will have some relief, but it will be temporary.  I will, in all likeliness, need future surgeries.  Its not so much that the chiari will keep regrowing, but the Ehlers Danlos Syndrome (EDS) will continue to reek havoc on my body and my bones. 

When I was very young, I had issues with depression.  When I got older, I attempted suicide and was diagnosed as Bi-Polar.  I regret so many of my actions and attitudes as I was growing up.  I really think that if I could have started life in my late 20's, I truly would have been a different person, and I'm not just talking about the big hair and blue eye shadow, oh, and the loss of my really pendulous breasts!!!  But, I dont believe in coincidences, and I've just had one smack me upside the head.

Me & My Girls for Crazy Hat Day!

My mother was saying that she had many hurts when she was younger, a victim of some very evil people.  I said that if they hadn't done what they did, she probably wouldn't have had the strength to endure the many trials she had with my father, and the difficult time she had after his death.  She agreed.  Then I had a discussion with another woman about domestic violence/abuse.  She made me remember the nightmare my first marriage was.  How my life after I left, as a single mother of two small children, was equally as nightmarish, but infinitely safer & happier!!

Because of these two coinciding conversations, I think I am finally ready to enter the retirement stage of my life.  It may not look like much of a life, but it will be mine, and it WILL be fun.  There WILL be more laughter than tears (because it will always hurt more to cry).  Oh, and there WILL be naps!!  Like I ever needed an excuse to nap!!!!  But now I wont care that some people look down on me for it!  I'm sorry, but there will be "NO"s.  Oh, I'll do it lovingly, but I will say no.   I will NOT let myself feel as though I am less than anyone else.  That's been a big problem of mine lately, and I have to stop. 

My Man and I, at the SU Game for Valentines Day

When you see me out in public, I will have a handsome Sasquatch on my arm, or a metallic pink cane somewhere near by!!  Depending on how I'm feeling, I may or may not be wearing a collar.  But, I will always have a smile.

One more thing... there WILL be more blogging....  I've really missed it!!

Post Op #1

Quick re-cap.  I quit smoking in February so I could have the Gastric Bypass Surgery.  I'm tired of hearing "But you aren't fat enough for the surgery!!"  First of all, that is personal, and my weight isn't the reason I wanted the surgery.

I am a diabetic.  And I'm not a GOOD diabetic.  As a matter of fact, I suck at it.  However, when they gave me that information 10 years ago, I laughed at them.  That's for old people, and I'm not old.  And I'm fine.  And I didn't take it seriously.  THAT is the number one reason I wanted this surgery when I looked into it 3 years ago.  I was denied because my BMI was only 37 and not 40, so my insurance denied it.  This year they changed the rules, and my BMI of 37, with my 745 medical problems caused by obesity, the surgery is covered!!  But then Chiari & Crap happened.  And I put it on hold, kind of.  I was still going to appointments, but I didn't think I'd be doing it.  My brain is more important than my belly.

But then I found out that one of the three Chiari specialists is telling new patients, who are obese,  that he wont do the brain surgery unless they lose weight, and he's recommending the surgery.  It makes it safer to do the brain surgery.  Dr. Henderson didn't tell me to lose weight, but when I heard this, I decided to reinvigorate my efforts.  My bariatric doctor was very supportive, and she fit me in to get the surgery done so I'd be all healed for my brain surgery!!!

I went in for surgery on Tuesday, Sept. 24th, and my blood sugar was over 300....  after being on a clear liquid diet for 3 days.  I was released from the hospital on Thursday, Sept. 26th. with no diabetes medications and a blood sugar of 146.  I still have to check my blood sugar 3 times a day, and the last time I checked it, it was 123!!!!!  THAT my friend, is the blood sugar of a NON-DIABETIC!!!!!

Does this mean I am no longer a diabetic?  No.  I do not believe I will ever be cured of diabetes.  I really hope, however, that we just put that SOB into severe remission!!!!  I wont claim success in this area until I'm back to eating real food..  but for now, I do love my new numbers!!!

I do feel the need to clarify some stuff.  We are in the process of raising money for my brain surgery... but then I go and have gastric bypass surgery!!  I need to clarify that Dr. Henderson is a specialist in Chiari Malformation, and is NOT an in-network doctor.  For my bariatric surgery, I had a co-payment of $150.  That is the inpatient co-pay and the only surgical expense we had to fund for this surgery.   I just want everyone to know that our fundraising efforts are above board and my integrity is very important to me.

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.

Where is the Good News?

It has been an interesting week here in Central New York.  Mainly because of weather.  More specifically, Rain.  Places that have never flooded before are flooding now, and I'm having problems and issues.

See, a friend of mine with MS left for work, and wasn't allowed to return home.  And she couldn't get her medications.  And these are Meds that just don't hang out at the local Rite Aid, they are specially ordered and sent from a specialized MS Medication place.  I love it when I learn something new, but I really wish I THIS fact wasn't a fact I picked up.  Well, she finally DID get into her house and was able to grab her meds, but she was also able to find out that her house isn't completely ruined...  the water hasn't hit the 1st floor!  She has a friend, however, who wasn't so lucky.  Kevin, his unnamed fiance, and their newborn daughter have lost everything.  Can you imagine that?  I can't and it breaks my heart.  Help the Unknown Fiancee

There are so many people who are going to be hurting from this.  See, when you life in a flood plain, you have to have flood insurance to get a mortgage.  When you don't KNOW you live in a flood plain, you just don't have flood coverage.  So, when this happens, you are screwed.  It kind of makes me want to get a flood rider on my policy, even though I live on a BIG will with a sloped yard that, if ever flooded, would cause a beautiful waterfall onto I81!  So, people will come together to help their neighbors.

The Madison County Habitat for Humanity released the following:

 Many residents from the city of Oneida have been devastated by flooding this week. Madison County Habitat for Humanity will be organizing volunteers to help with clean up. Anyone looking to help please call us at 510-5665.  More details will be coming soon.

So, here I am, I have LOTS of time on my hands, this is an awesome civics lesson for Cassie, and I can't help.  MEANWHILE, my sister just posted another fundraiser to help me get the money I need for my surgery.  And there is almost $2000 in the original one.  But do you know how hard it is to ask for help when there is so much more going on in this world?   And I'm only talking about the flood.  I have friends who have loved ones fighting for their lives in hospitals, as well as friends who are fighting to keep homes and families together through financial and other hardships.  Part of me wants to pull all the fundraising, 'cause it is almost embarrassing.  The other part of me just wants Jay Z, Madonna, and a few football players who haven't committed murder to see it and put an end to it.  <sigh> I guess I've just had a very humbling week, and I needed to get some of this off my chest.  I promise to lighten up tomorrow.  Maybe I'll even get a video of Marley and I singing and dancing together.  Any requests?

Its Taco Night!!

Since my family is doing this internet fundraiser for me, I figured I should do my part and at least entertain people with my blog.

The idea is that if we start an internet fundraiser, and enough people share it, it will eventually make it to Angelina and Brad or Oprah.  Now I'm thinking maybe Ellen will see it, realize I'm a hoot, and offer me a job.  I could see myself having my own segment somewhere that I can just spout off what is on my mind.  Kind of like Coach Sylvester's "Sue's Corner".  But then I see pictures of myself and think... ummm..  probably not.

If you remember, I did a post a while back about how UN-photogenic I am.  Here is more proof:

Please notice a few things.  I'm shredding lettuce and putting it in our Taco Sombrero.  Why?  Because that is how we do Taco Night around here.  No, my eyes are not close, and I am not dreaming of guacamole.. I'm concentrating on shredding my lettuce!!    Now, I used to do this standing at my counter.  I used to be able to get an entire taco dinner ready and on the table in 15 mins or less.  Tonight's dinner took me 45 minutes.  I'm sitting here, blogging, and my eyes keep closing.  I'm hoping I make it to 8:00 Ice Cream time!  

Another thing I'd like you to notice is the floor behind me.  That is a dog toy.  This is one reason why Marley will never become favorite child around here.  I've had one constant rule in my house...  no toys in the kitchen.  Marley will NOT listen or abide by this rule.  

Now, in the beautiful China cabinet to my right, if you look closely, there is a beautiful blue bottle that looks a lot like the I Dream of Jeanie bottle.  It is mine.  I will let my brother play with it for 5 minutes once a year, if he continues to be nice to me.  But, just like the Winnie the Pooh plate, it is MINE!!!!  

So, maybe this wasn't the most entertaining blog...  but I tried!  Rob say's  that my ability to keep plugging along is what is keeping me going.  He said its amazing that I continue to keep fighting to keep things as normal as possible.  Even if that "normal" happens to be eating out of an over priced sombrero!!!

If you'd like to donate, thank you. But I really just want you to share my link....  I'm certain Bill Gates will want to help, he just doesn't know it yet!!!!  www.youcaring.com Put Lisa's Brain Back in her Skull