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...

Monday, December 27, 2010

New Year 2011!

As the New Year approaches.. I always seem to look to the past for change in the future. 2010 was another physically exhausting year. The past 3 years have the been the most challenging years of my life. For someone who was independent and headstrong in has been a humbling experience. Today I posted a quote on Facebook.. I thought it was words to live by when I found it .. and just had to share it. "Tragedy can make you bitter or better". SO TURE! In reading this.. I realized something.. it is our choice! Not our circumstances, our physical health, our finances, friends or family.. just a choice. I started reading a book that is so awesome! "Being Sick Well" by Jeffery H. Boyd. He shares the story of his wife who had 2 heart attacks, 2 strokes, diabetes, her kidneys failed, went on dialysis, had bypass surgery on her legs, eventually lost both her legs, in last years of her life she went blind and her hands became numb. She passed away at age 50. The point of her story was that she continued to be upbeat and optimistic through it all. She enjoyed life to the fullest. This book not only shares her story, but many others who share the same out look on life with chronic illness'. It is a must read for anyone who lives with a chronic illness or cares for someone who has a chronic illness. I consider myself to be someone who is optimistic. I dont dwell on "why me". Iam not a daily pity party. I ask what is it that Iam supposed to do with it? I think that falls in the "better" part. I feel I have changed and grown as a mother, wife and friend. It clarifies everything in your life. Whats important and whats worth your time. It maginifies what used to be the "small" things in life. You appreciate the days that you feel good and the days you dont. I also have a strong faith. I believe God loves me, renews my strength and is merciful. We all need to believe in something. Its finding that something that is a constant quest we are all on.. including the healthy people. So in this "New" Year.. I pray that you will ponder that question.. and seek it out. Happy New Year!! May you be blessed with loving friends and family!

Friday, October 15, 2010

Snowflakes are one of nature's most fragile things, but just look what they can do when they stick together. ~Vista M. Kelly

Thursday, October 14, 2010

October 14, 2010

I have had dreams and I have had nightmares, but I have conquered my nightmares because of my dreams. ~ Dr. Jonas Salk

Wednesday, October 13, 2010

So where do I sign up?? I would be on the next plane... Who's game? I know there are so many of us that deal with so much "crap" when it comes to Chiari (and related conditions). It's like it never ends.. doctors, medications, alternative treatments, insurance companies, social security disability, workers comp, office personal, friends, family.... its always a battle. Fighting for the proper care, to be heard, understood and not pitied. No matter which way you turn... its not easy. It almost seems we are a special breed who have to be strong.. or do we? Is it strength, bravery, courage, guts, faith, hope, patience or grace.. that keeps us going? Is it our family and friends?...the people who care for us..support us.. love us, fellow chiarians or God? What makes a person with chiari tick? Is our trials, tribulations, testimonies, or longing to make a difference in the world of Chiari? I dont know if any of us know for sure.. need to know or want to know.
I do know Iam a survivor. I survive everyday. I survive every surgery. I survive my symptoms. I survive arrogant doctors. I survive ignorant nurses and office personal. I even survive hurtful comments and advice. I survive. Survive~to continue to live or exist after the death, cessation, or occurance of, to endure or live through (an affliction, adversity, misery, ect), to get along or remain healthy, happy, and unaffected in spite of some occurrence. Synonyms~ Persist, Succeed, Outlive: refer to remaining alive longer than someone else or after some event. Survive usually means to succeed in keeping alive against odds, to live after some event that has threatened one. Outlive: stresses capacity for endurance, the time element, and sometimes a sense of competition. It is also used, however, of a person or object that has lived or lasted beyond a certain point. Im not sure about you, but reread that again, how many times does it say "live"? That is what we do... L~I~V~E!!!! We are supposed to live... even though we have chiari. Survive.. even though we have chiari. Make a difference.. even though we have chiari. Share you story, listen to fellow chiarians challenges; offer love, compassion and comfort to people who are hurting. You know what they are going through. we are all in the same boat. step out of the boat. Reach out and live.

Thursday, September 16, 2010

Conquer Chiari Walk Across America

This month is Chiari Malformation awareness month. It is also the Conquer Chiari Walk Across America. People from all over the country in 30 different locations will be walking to raise money for research this Saturday September 18th . This is a monumental event. Last year $250,000 was raised and 90% went towards exciting new research! That is awesome! Research is funded only by private donations. I have walked the last 2 years in Albany NY. I will be walking in CT this year. I have raised $1000 towards this years walk. It is a great opportunity to meet other people with Chiari. Chiari is a debilitating, life changing condition. People who survive Chiari everyday are reminded of what a "true survivor" really means. A true survivor is someone who doesnt let Chiari become who they are. We hope that through research people will be helped in the future. That .. Chiari will be recognized as a "chronic" condition ...that can be disabling. I believe that Chiari has seasons of wellness and illness. When we are pushing through a season of illness.. we find support through our friends that share the same daily challenges of Chiari. Please help support us and find alternative treatments for Chiari. Our lives depend on it. You can click on the title above for the link to make a donation. Thank you.

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