About Me

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Im 41..married to Bob..we have 4 kids..Chris 25, Nick 20, Mitch 18 & Tori 15

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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...

Wednesday, March 17, 2010

March 2010


As we head into Spring.. Iam so looking forward to nice weather. Warm sunny days and sunshine. It has been a long cold winter. I have been on an emotional roller coaster over the last couple of months. I recieved fantastic news Friday.. I won my workers compensation case! All I could do is Praise God & cry. It has been a long hard road. It is a humbling feeling to realize you are disabled. ..and even more humbling when other people agree. I cried when I filled out the application for Social Security Disability. I also won my SSD in 4 months..in 2008. I dont think anyone says when they are little.. "when I grow up I want to be disabled". You almost feel like you are broken...
A couple of months ago I followed up with a Orthopedic Hip specialist for my hip pain. He confirmed the diagnoses for Hip Impingement and a labral tear. It is a big surgery to have it corrected..worse than hip replacement. So at his recommendation.. I followed up with a orthopedist who specializes in knee caps for patella instability. I have been having issues with both my l/hip and r/knee for sometime. But other health issue's took precedence. My knee has had water on it since last year. My hip specialist is recommending having the knee surgery first..in hope to relieve some of the hip pain. Iam crossing my fingers..
Iam going in for knee surgery this Friday. It is a big procedure. I have patella instibility...and some damage from the instibility. So I will be in a immobilizer and wont be able to put any weight on it for 6 weeks. It is both arthroscopic and an open procedure. Its a 2 part surgery. The tendon at the bottom of the knee cap will be realigned and reattached to the tibia with 2 screws. A tendon will be made with cadavar tissue and attached to the side of the knee cap to stabilize the side to side motion. Just another battle scar.
Iam hoping to be able to attend the Ehlers-Danlos National Foundation conference in July. It really depends on how my knee is and how Iam feeling otherwise. I would like the whole family to go. I think my chilidren would benefit from meeting other children with EDS. They feel different from other kids. It makes my heart ache to think they feel damaged. I know that feeling.
Im sorry it has been so long since I last updated my blog. I have been kindof side tracked. Issue's with friends.. doctor appointments.. economy effects on my husbands business.. aches & pains with the cold weather. I dont mean to complain..just explaining where my mind has been.
We have been going to Church regularly for the last few months. I have also been going to a Women's Bible study on Tuesday's. I have been learning how to "really" lean on God. Praying about every obstacle in my life. Asking Jesus to heal my old hurts. Seeking divine guidance. Feeling like there has to be something else..asking what do I do now?
I will update my blog after my next appointment with the OR. Iam having the surgery in NYC at the Hospital For Special Surgery. This is where I had my shoulder surgery. Hopefully I will come home the next day. Please pray for the surgery to be successful .. a speedy recovery...and my family..who take such great care of me during these endevers. Iam so Blessed to have such a loving family..

Chiari Interview