After a crap load of test after test... After test here is my answers from my trip to NYC to The Chiari Institute.

I won't bore you so let's make this longggg story short. (one reason I decided to email you all is bc I don't know if I am going to be up for telling each individual what's going on over and over. I got to do that with my family the day we got answers and wanted to scream by the second person).

It was confirmed that I do officially have eds. That stands for ehlers danlos syndrome. It's a connective tussue disorder. It effects every single peice and part of my body from head to toe.  Tissue is everywhere connecting everything. Tissue sits inbetween all your joints and all of your vertebre in your spine and the list goes on.  It has a lot to do with tone and holding things together like glue (they call it the fatty like substance that holds us together like glue). So to get to the main problem for me is holding up my head aka cervical cranial instability. These two things are what are bothering me the most my Spine and head stability. So let me explain more on eds. The tissue is a fatty like substance that plays as cushion and connection.  I am not producing that fatty like substance. So basically I am just muscle and bone to narrow it all down. Not 100percent but a lot.  The doctor explained that me being tall, thin, strechy skin, young skin and extreamly flexible is all external signs (they did some crazy test and there were also other signs) as the dr said all of these things are nice to have. Dot yay just yet.  Ha. He said I haves supermodel body. Pshhh ha whatever. But my insides are in trouble. My joints are 10-15 years older than other 25 year olds. So basically I am 18 on the outside and 40 on the inside. (hey that's actually what the wii told me awhile back. haha). So to the point... Having eds is causing my head to be unstable bc there is not tissue (etc etc) to help it be bouncy and movable. This makes me think of brakes and how when you don't have the shoes or is that boots haha you grind. That basically is the best way I can explain abd describe it.  It's causing my head to not be able to hold it's self up for long periods of time and it's putting tonnnns and tonnnnnns of pressure and pain on my spine. Like a pushing down affect. Think grinding brakes again how one things effects and leads to another. That pressure has already caused disk in my lower spine to start slipping /: this also putting a lot of pressure on my brain stem. Your brain stem is in change of breathing swollowing standing and a few more things. This leads to eventually make all of those things harder and harder for me to do. And scary thing is maybe to never be able to do one my own. But... You can stop the process and actually make these/those things better!!! Yay! Which is why they would want to eventually fuse me. The fusion would be later on it could be three months it could be a few years. It all depends on how fast all of these things start affecting me and how I start to feel after loosing the function of doing these things. :((( A fusion means no more moving my head. They literally fuse it in your skull and down to c4 with medal rods.  There are two rods with 6 screws in my skull and 4screws in my vertebras. This would be forever. And my skull would eventually grow onto them. (as for you all saying I have a few screws loose in my head will be the joke of my life) fusion helps the head to sit  up high and takes all of the pressure away and the pushing down away that's  on my brain stem and spine. This pushing that is accuring now is also causing my fluid. Csf. Aka water in the brain to be getting stuck. Stuck in my lower spine and stuck in my brain.  I am cutting it off when I am bending down even slightly bending down. See all of this csf/water is suppose to travel from brain allllll the way down to you tail bone in your spinal cord and alllll the way back up. It getting stuck is causing swelling. Swelling of the cerebellum (this is what I had surgery on this past July- yes the surgery releaved a lot but is still tooo dang big) The swelling is causing horrible horrible head pain black curtin flashes eye problems and the list goes on. It doesn't just end with  only swelling but it can eventually or could have caused cist to form in my spinal cord. Since the fluid  would just be sitting and sitting and building up.  Butttttt for now I am on a new medication that acts as a shunt. This means lotssss of pee for Felicia. It's going to take my csf- water away from my brain and spine and plug it to my kidneys. Which means pee time. These pills have a lot of side affects. So please pray I bypass all of them. I am also going to be wearing a corset. This is to keep my spine straight. Eds is causing me to hunch. Hunching equals cutting off the csf. I am also going to start to wear a neck brace in the car and around the house. Only as a passanger. See every bump I go over is crutial. And ouchie bc it's the brake affect again. So yeah I get to make a super cute fashion statment ha. Oh my. So with the new drugs for the flow to leave my body I am on a few things to hopfully prevent these side affects. And am on a big muscle relaxant for the night to stop me from tensing which is yet another thing eds people do tense bc they don't have the glue to help when you may bounce in a car or running or ridding a bike. This also leads for me to be weak and for my bones to brake or sprain easily. :( so no fun activities. I am not suppose to do yoga pilates or stretch. It could also cause breaks. :( guhhh what can I do. Well I can get massages. Actually they say I need to and to do phsical therapy three times a week.  I quess that's all I get to do. /: physical therepy is suppose to build up my neck which is what I need before they would even fuse me. Cutting threw that muscle again could be baddddd news if I had no muscle built up. Also I need bone density test and my lord this is story is getting long but the list goessss on and onnnnn on with all the information I hold and was told. But hopefully this can help you understand what's going on. :)))
To make this story all better I must say I got my answers and I am ready to try these things to prolng the surgery and to releave some pain while I build up my tone and while I work on my bones getting tons of calcium and more vit d. All these are mandatory before they can fuse me. Why bc my bone could turn into mush like cheese if it's unhealthy the doctor said.

::Giving way to that familiar ill::