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

Flabbergasted.... AND the spelling has been verified by spell check!

I am flabbergasted, not only because of what I have to do, but for the pride I'm willing to swallow to get there.

This madness needs to stop!!!

I do not believe in coincidences.  I never have.  When I decided to see Dr. Henderson, the Chiari specialist, I called for an appointment at the beginning of May.  He was booking into the beginning of August, BUT there was a cancellation and we got put in the middle of June!!!  Then, I call to book my surgery and I'm told the doctor has an opening on September 19th, OR, since there had just been a cancellation, I could also be given July 23rd.  At this point, I have decided that the Lord really feels I need this surgery.  But then the next surprise hits us.  We need almost $10,000 deposit to have the surgery.

Suddenly Pitman feels that I REALLY don't need the specialist anyways, and we should take our chances with a local neurosurgeon.  But that silliness only lasts for a few moments.  Then he realizes that the chances of me needing multiple surgeries instead of the ONE increase dramatically when we take Dr. Henderson out of the equation.  I suggest we simply set up a kissing booth in the middle of Syracuse... but he's afraid of having to kiss toothless hobos.  So much for THAT idea.

My son, Steve, said I needed to start an online fundraiser page and he'd send it to all his friends and co-workers and so would everyone else.  Oh, yeah!!  That'll work!!!  After all I am the one who bought everything for my kids fundraisers because I was too embarrassed to ask people to buy the stuff!!  I'll just ASK people for money!!!  But, when Rob said "I dont know if the bank will just GIVE me a $10,000 loan" and I starting wondering if they'd take Cassie as collateral, I figured I'd swallow my pride and try.  So, I made the page.  And its stupid.  I would have rather had fun with it, but I felt I needed to be serious, and try not to be embarrassed.  I swear I could do so much better AFTER my surgery, and I have my mind back!!!  But then, if I HAD my mind, I wouldn't NEED the surgery, right?

So, here it is: https://www.youcaring.com/medical-fundraiser/put-lisa-s-brain-back-in-her-skull/68674

NOW, here is where it gets fun.  See, I have a bit of a problem.  I know for a fact that I'm going to hear "I'd love to help, but I just lost my job, and Zeb lost his car...  really...  we aren't sure where he put it.. and Martha?  Martha needs a hair transplant because of her alopecia and Zeb Jr. just broke his leg for the 3rd time climbing that tree."  And I'll end up giving them the $20 bill I have in my wallet that I got from Aldi's as my prize for staying under the grocery budget.

Things are hard all over.  If people are in a bind, I want prayers.  The hope is that eventually my little cause will hit a few people who AREN'T having big problems, like Oprah, Angelina & Brad, or Bill Gates, and they'll be able to give big, or at least a lot of people who can give a little!!  I'm certain the Lord WILL provide, and I doubt He would make anyone suffer on my account, because that would make me sad.

WARNING: Cervical Collar Hauntings are on the RISE!!!

I understand that doctors, are a bit busy and highly educated.  The rest of us probably aren't as bright.  Few of us couldn't light up a cardboard box at noontime.  I may fall in the latter category, because I was almost killed by a cervical collar. So, would it really hurt them to give us some kind of in-service on how to use the previously mentioned cervical collar?

First of all, I'm told to wear it to see if it helps my symptoms, because my skull is sliding around on my spinal column.  Hm..  that actually explains a lot, don't you think?  So, if the collar helps, then Dr. Henderson knows my C1 and C2 vertebrae need to be fused.  I think this will keep my head from falling off.... which would be a cooler party trick than popping out my belly button that time I was pregnant with Steve.    But I digress.  They gave us this bag with the collar and said "use it".  Rob and I decided that spending our one night alone in a hotel room, after the day we had, putting together this odd looking torture contraption that has been made illegal in Guantanamo Bay (which we found out was in Cuba while playing Crossword on the Nook) sounded like a good time.  When we got back to the hotel room after dinner, we basically passed out.  So, first thing in the morning he told me to lay down on the bed, and I told him we had to get on the road.  He laughed and grabbed the collar.  He said "the directions say to place the velcro straps between the ear and the trapezius.  What is the trapezius?"  I told him its what the Flying Wollenda's use at the circus.  He said that was a trapeze.  I told him I didn't have a trapeze, and even if I did, we still didn't have time for intimacy, as we needed to get on the road.  Of course, he wasn't amused... so I told him it was the shoulder muscle, and we got the thing on.  Man, its a pain in my butt.  But I didn't think it was dangerous.  Where is where you must get the small children and those easily scared to stop reading.  You see....  my Visa Collar, the #1 selling cervical collar....  is possessed.

First of all, it made me snore so bad last night, my throat hurts.  It felt like something kept dropping down INSIDE my throat, and closing off my air way.  I fought the feeling being smothered from the inside to the point of biting the crap out of my tongue.  I will get the new "nasal pillows" I need to use my sleep apnea machine (that has been in the closet for over a year) and see if that helps.  If not, then I wont sleep in my Vista Collar because I'm certain the evil spirit living in it is really trying to kill me.

The other issue is just as dangerous...  see, I really can't look down well, and I live with a Dachshund.  I'm thinking about getting him a suit of armor so it doesn't hurt Marley as much when I step on him.  Now if I can just figure out how to save ME when I trip OVER him I'd feel a little better about things.   Maybe the collar WANTS me to trip and fall... maybe its not just at night time that has tried to kill me!!  I have so much to think about.......

Update: Or Our 1st Trip to Maryland to Find Out Whats Going On!!

Hello Friends and Family!!

As promised, here is the update.  The good news is that I am NOT crazy!!!   I have an 8mm part of my cerebellum that is falling into my brain stem.  This is causing a build up of cerebral spinal fluid and increased pressure in my brain, which is what most of my headaches, balance, vision/hearing problems, "brain fog", and stuff is from.  

I also have Ehlers-Danlos Syndrome which is a " connective tissue disorder, caused by a defect in the synthesis of collagen (Type I, III, or V). The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. Depending on the individual, the severity of the mutation can vary from mild to life-threatening. There is no cure, and treatment is supportive, including close monitoring of the digestive, excretory and particularly the cardiovascular systems. Occupational and physical therapy, bracing, and corrective surgery may help with the frequent injuries and pain that tend to develop in certain types of EDS, although extra caution and special practices are advised to prevent permanent damage.^[2]"

I also have Cranio-cervical Syndrome, Compressed Post Fossa, all in addition to my 8mm Chiari (the radiologist measured it at 5mm.)  Dr. Henderson also believes my "new" lower back problems are from the Chiari and EDS.  I'm now in a Vista Neck Brace to see if he needs to fuse my C1 & C2 when he does my decompression.  I will know the plan next week when I call him back to give the results of this Collar Test Drive.    (how the hell do you eat in these things?!?!?!)

I almost cancelled this appointment a few times because I was certain I would walk out of there being told I was a fool and there was nothing wrong with me.   When we first started, Dr. H said "Wow!  It looks like we have a simple chiari!!  what a welcome change!!"  by the end of the visit it was "Wow, you have a lot more going on here that you were hiding!"  Now, if a specialist, an international renowned neurosurgeon, almost missed a few things....  I'm so glad I went to him!!!  I'm certain no local person would have gotten 1/2 of it!!!!

As always, I thank you all for your support and prayers!!!  We are still at the beginning of this journey with a long way to go!!!

Yeah, its been a while.....

I'm sorry I haven't posted.  Its kind of hard lately.  Typing is hard, actually!!  I'm always tempted to type out a paragraph for Facebook and NOT edit it so people can see what I've turned into.  No, I don't sit here drooling on myself....  I'm still able to wipe the spittle and do have SOME pride!!!  But there is a lot of things I can't do.  I HAVE to take Cassie grocery shopping with me.  I can't do it alone anymore.  Unloading the cart at the checkout has turned into a disaster waiting to happen!  She's cool about it, in a "But I'm a teen and don't WANT to hang out with my Mom in a grocery store" kind of way.  Its amazing what the promise of a donut from the bakery can do to improve someone's attitude, though.

My Mother's Day Present
Since I don't FEEL like
Wonder Woman anymore,
Pitman decided I needed the
reminder of who I USED to be!

So, one week from today, Rob and I will be on our way to see Dr. Henderson, world renowned expert on Chiari Malformations and associated disorders.  I'm scared, angry, frustrated, and in pain.  Actually, its more of a discomfort, what I read from others on my Chiari Facebook Pages is PAIN.  So then I swing over to the "maybe I'm just being silly" side.  You know, the part that says "I'm just having some headaches, fatigue, muscle exhaustion, inability to make a coherent sentence...."  then I realize I do have a LOT going on.

But is it REALLY so much that I need to see a specialist in Maryland?  I mean that is a LOT of money...and what if the guy IS a nut who'll tell EVERYONE that their head is about to fall off and that their spinal columns are being tied together so he can cut into them and make them do some kind of creepy puppet dance while they are out cold?  (mental note:  see if puppet dances are on UTube).

Then there is the whole "looking into my future" thing.  No more roller coasters or amusement park rides?  No more singing to the radio or the songs I make up to irritate Pitman?   Right now I can't walk more than 75 steps to my mailbox and 75 steps home.  Will that get better?  Will I ever be able to sweep the whole down stairs without taking a break in each room?   Will I be able to take a week long kayak trip in Puerto Rico?  No, I haven't done that yet, but I've always wanted to....  I kept saying "someday".  Have I missed all my somedays?  Is Chiari a death sentence?  Not in "I'm about to DIE!!"  But more like "I might as well BE dead?"

I really hope these questions can be answered next Monday.  I'm thinking they wont be, and that makes me sad.  But I wont cry.  Why?  No, silly, not because I'm strong like Wonder Woman... but because crying (just like singing) makes my headache worse, and its not time for the Migraine pills yet.......

What Happened To Lisa?

Hello, my friends.  I'm certain many people are wondering what happened to me.  Lets take a step back in time, to the middle of February.

I had come out of a bit of a depression.  One of the lows I find myself in as being BiPolar.  For those who don't know this about me, I'm sorry.  Its something that has been with me so long that I figured everyone knew by now.  It not something I'm ashamed of or something I hide. I'm actually kind of proud about it.  Why?  Because, in all honesty, I'm good at it!!!  I am able to do a lot of things other BiPolar people cannot do!!!  I didn't rebound to a mania...  but I do like me a good mania <grin>...  I did, however start planning things in my life, eating better, moving more, getting Cassie involved in it all!!  Cassie?  She was doing awesome in our schooling, really retaining stuff!!  It was a new age and we were liking it!!!!  I was going to get my BiPass surgery to get rid of my diabetes!!  I bought a BIKE!!!!!  I quit smoking!!  I was on a roll!!!!

Then the breaks screeched and every thing came to a complete halt.

Shortly after I quit smoking, the headaches started.  And got worse.  I noticed my exhaustion returning.  But I couldn't go back to napping because when tried, I'd get restless leg syndrome all over my body and I'd have to get up and move.  But then I'd get exhausted and need to sit.  My sleep schedule gradually changed from going to bed at 10 and up at 6 to going to bed at 9:15 and getting up between 8 & 9.  Exhaustion, complete muscle fatigue.  Showering and walking to the mail box was an aerobic work out which left me wanting a nap.  Then the hearing started to go.  When people talked, including me, the distortion was such as it sounded like a serial killer on the phone demanding ransom.  That is when I went to the doctor.

"You are suffering from Migraines.  Lets just get an MRI to rule out a brain tumor and keep me from losing my license.  Don't take any pain meds with blood thinners, just in case, until we get the results."   Three days of pain later, I get the MRI, which induces a migraine, so I know the difference between the two types of pain..  I was told to go ahead and take an Excederine Migraine for the migraine.  The pain thats left over?

Welcome to Chiari Malformation!!!!!!!

What is Chiari (pronounced Key-arrrr- eeee) Malformation?  Its the bottom part of my brain (the cerebral tonsils) being pushed out of my brain, into my brain stem, and obstructing the flow of cerebral spinal fluid.  Can this kill me?  There are tons of other things that are going all, because the brain is the power house.  My thumb hurts today.  Its it the Chiari?  Could be!!!  A little extra pressure could pushing on that portion of my brain!!!!  Brain fog, loss of memory, balance, etc, every day is something new.  In less than 3 months I've gone from someone embracing life to thinking "If this is what my life will now be like, then I hope the prognosis IS death."  Alas, its not.  It CAN be...  it can effect heart, organs, etc.  The only treatment is surgery... and that is always a risk.

Surgery.  I'm looking at brain surgery and I'm hoping it will help.  BUT this is such a strange syndrome, there are few experts in the field.  So many people have been butchered by local surgeons, that they have no hope of leading a real life.  We've decided I'm worth much more than that and are saving all our money to travel to Maryland to see an internationally renowned specialist named Frasier Henderson.  We have our first appointment with him in June.

Until then, I will have good days where all I have is a headache, and I will have bad days where I'll end up in the emergency room because I can't stand or walk, and I collapse in the Federal Building.  All I ask is for your prayers for peace and healing.  They Lord may not have healing in my future, but really need peace to keep my sense of humor and to keep from getting really grumpy.

What if....

One of my homeschooling mentors, who goes by the pen-name "Ellie Mae", shared a statement from Operation Christmas Child on Facebook this morning.  It really got me thinking.  Before I expand on my thoughts, I want to say that I LOVE the name "Ellie Mae"!!  It brings on thoughts and images of a sweet lady in skirts, working her land, teaching her kids, and loving her Lord.  I really don't know my "Ellie Mae" in person, but I'm certain that is exactly who she is.  Yes.  I know her real name, but I can't bring myself to use it.  I know a person with that same name who I feel is a poser.  Someone who WANTS to be an Ellie Mae, but can't seem to get her crap together long enough to actually BE an Ellie Mae!  In case you read this, Ellie Mae, you and Donna are much more than my mentors....  you are also my heroes!!!!

ANYWAYS, I love Operation Christmas Child.  Its from an awesome group called Samaritan's Purse.  When I was in the Hudson Valley, our church youth group did a lot of fundraising for them.  I hope they still do.  (You can check them out on the web at http://www.samaritanspurse.org/occ).  The question posed was this:  "What if you woke up today with only the things you thanked God for yesterday?"  My original knee jerk reaction was "OH CRAP!!!"  But then I thought more.

Yesterday I thought about a friend who is going through some very hard times.  I took a moment to thank the Lord for being with me through my hard times, and not giving up on me when I gave up on Him.

Yesterday, I think an internet friend of mine was mourning the anniversary of the loss of their child.  I thanked the Lord for the lives of my 3 kids, even if I cant see two of them as often as I'd like.

At one point, yesterday, I angrily decided to make cheeseburger macaroni for dinner.  Then realized that Pitman wouldn't care.  He likes it, so does Cassie.  I took a moment to thank the Lord for my husband.  I could have ended up with one who is an uptight perfectionist who expects the same from me.

Also, I took a handful of chocolate chips....  stress eating, bad juju... but I said "mmmm  Thank you, GOD, for chocolate!!"

During grace, I say the same thing over and over again.  "Thank you, Lord, for this meal and all of the other blessings you have provided for us.  We ask that you continue to watch over all of us, (I sometimes add "especially" when someone is in need), including those who aren't here at your table, bless us, lead us, and guide us, and let Your will be done."  Then I pass it on to Robert.  Cassie starts.  This is my attempt at family prayer time.  Its not Ellie Mae, but its all I've got.

So, it looks like I would have just as much today as I had yesterday.  But I plan to keep this in mind.  I'm also going to make sure I remember to thank the Lord for peanut butter.  I must have all my bases covered.....

Confession... I'm not perfect...

I have a major flaw in my brain.  Those closest to me know what it is.  My mother really needs some sort of award for dealing with this flaw through my teen years.  It could NOT have been easy.  Imagine that you have a 16 year old daughter, who has amazing ideas, who always takes the sentence "You can't do that" as a challenge.  My mom learned quickly, though, how my mind worked.  I think she tried to use it against me, but it probably didn't always work.  "You can't take auto shop", my Dad told me.  Boy, was he ticked when he got my report card and it said I had an B in Auto Shop.  hehehehe  Yeah, it really isn't easy having to deal with me at times.  My mother even told my ex-husband "The fastest way to get Lisa to do something is to tell her she can't do it".  He didn't learn.  After three years of him telling me what I couldn't do, I left.

So, recently I was having a problem with the dogs taking my covers while I was sleeping.  We have a king sized bed, and the bedding barely hung over the sides, and they'd steal my covers.  So, after months of brain storming, I told my mother my idea.  "I'm going to take 2 twins of everything, and sew them together and make new bedding."  Mom made a fatal error.  "You can't do that, it won't work".  Oh, really?

So, I dropped it.  I learned a LONG time ago, there is no arguing with my mother.  So, I did what I always have done in the past, and just did it anyways.  Rob was watching me every step of the way, trying to figure out what was going on in my mind.  Oh, I was a good girl.  I picked up a bright salmon (a pinky-orange for you guys who don't know your colors) sheet on clearance and said "I LOVE THIS!!!  We are going to use this in our new bedding, ok?"  I don't know what he said... but I did ask him.  Every time I put something together, he'd have this look that said "EWW!!  This is gonna suck, but if I say I don't like it, it will just get worse."

So, I took this:

And made THIS:

The comforter hangs off the edge a good foot or more, and last night I had blankets ALL NIGHT LONG!!!

Me: 1, Puppies ZERO!!!!

Oh, and sorry, Mom.  But I love you very, VERY much!!!!  If it weren't for the strong woman you are, I would never have the guts to be the strong woman I am.

Special Education: Its like comparing Apples to... umm.. Androids.

As all my friends know, I'm immersed in a strange world called Autism.  I thought I knew a lot about it, but I have learned so much more.  I was considered a "Great TA" in my time in public schools... but I wish I knew then what I know now.  The most important lesson is that people on the ASD spectrum can NOT think and feel at the same time.  So, when I'm having an intense discussion with Pitman, and I ask him how he feels about something, he truly does NOT know!  Why?  He's too busy thinking to access his feelings.

Recently, I was given the computer analogy that people with Autism have a different operating system than people who aren't.  The more I've thought of it, I realized its even more than that.  Its a-whole-other proprietary hardware system, also!  What does that mean?  Let me explain it to you.

The Autie's brain is physically different from NT's.  (Autie= my term for people with Autism, NT=Neuro-Typical or simply everyone else)  The nerve thingies that send messages through out the brain (mainly front to back) do not have as many connections as a "normal" brain.  Yes, the messages may eventually get to where they are going, but it will take longer and the message might get a little messed up.  So, its not about running a Windows 8 program on a Windows XP, its actually more like trying to run Microsoft Word for XP on a Macintosh.

Wait, Lisa, you are talking nonsense!!  You can't do that!!

 Exactly.

And Special Education needs to realize that.  Everything from teaching to discipline MUST be different for Auties than it is for the mainstream.  These kids need to learn not only academics, but how to interface in an Android world.  It sounds like an impossible task, but its one that every Autie Mommy (and wife) has taken on to ensure the success of our loved ones.

Wow.  We are taking on a task that Bill Gates and Steve Jobs couldn't even do.  Yes, we ARE amazing.  And the chances of any of us becoming millionaires is slim.