About Me

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Im 38..married to Bob..we have 4 kids..Chris 22..Nick,17..Mitch,14..Tori,12..

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Me Brain

Story continued..


..July 3rd,07 was the day it all began.. unbearable neck pain..so after many dr appointments..I finally was able to see the drs with the answers at The Chiari Institute in Long Island NY..I was dx with Arnold Chiari Malformation,Syringomyelia, Ehlers-Danlos Syndrome, and Tethered Cord Syndrome..I also found I have herniated discs,buldging discs, Degenerative joint disease in my entire neck,cervical lordosis, spinal stenosis, valvular regurgitation in the tricuspid and mitral valves..this all hit me like an impossible nightmare..but it was a life that I had to make a decision to embrace..I want other chiarians to know that although there are not many of us out there..we all need each other to cheer us on.. some of us have great family and friends to support us..but there are still many of us who dont.. I have a supportive husband.. who see's how the headaches stop me in my tracks..or the neck pain that puts me on the couch with the heating pad..numbness..earaches and many other obsticles I have to overcome each day..many of my family and friends dont understand how it is in my shoes..Im here to share MY Story , highs and lows, information I dig up and offer support to people who need it...

Tuesday, August 19, 2008

DISGUSTED!!!!!

Can anyone relate to this massive..gigantic...immeasurable... feeling of frustration and disgust............................

I called TCI today to find out when they are scheduling surgery and if they had put in for my mri approvals. Only to find out that she is not sure when they are scheduling surgery...my appointment was made for 3 mri's and an xray 8/28 at 8am...and get this!!! Im supposed to see the neurologist next Thursday at TCI..not the neurosurgeon!!! I dont need a diagnoses!!!! I already know what is broken. I was supposed to be scheduled with a neurosurgeon. Like I want to travel over 2 hours away to meet with someone new..to tell me what I already know??? My medical secretary said she would have to call me back..because Dr Bolognese is booked until DECEMBER!!!!

I think optimism has packed his bags and left the country!!! Pessimistic is movin in!!! Its a good thing Im going to my Psychiatrist tomorrow. I think we need to up my dosage!

Maybe Im over reacting a tad..but this is starting to turn into a series instead of a bad dream. Its bad enough I was told I would have to wait 12 weeks..now I may have to wait 4 months!!! I dont know how Im going to do it.....

1 comment:

lace1070 said...

I am so sorry that you have to wait that long. I felt the same way when I went for my f/u in May ~ that's kinda why i went ahead and scheduled surgery so there wouldn't be a 'waisted' visit in-between! Hang in there ~ Hugs ` Lace

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