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.......