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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...

Friday, September 12, 2008

Count Down....9/30

Tick Tock..Tick Tock... it seems as if time is flying. I have so much to process. My brain is going a mile a minute. Iam scheduled for CCF! Iam scheduled for CCF! I have a boat load of tests and appointments the day before surgery. I have talked to staff at TCI..including the NS. Iam getting cold feet. My husband doesnt think I should have the surgery yet. He wants me to wait until it gets worse. I dont know what to do........ The nl at TCI told me that normally this is an elective surgery, but in my case it is affecting automatic functions, so I need to have it.
Iam so confused..................Iam stressed out to the max........Iam feeling guilty for being sick...for putting my family in debt.......for being a burden.......for not being able to do all the fun things we used to do..........for not being able to clean the house and cook 6 days a week......for not being able to work.........for having to cancel social gatherings at the last minute because I dont feel good........
GUILT
Its like..its out of my control. I just feel guilty. I know I shouldnt..but I do. My husband said it is completely up to me..but how can I feel at ease with myself knowing that Iam putting my family through all of this and they dont want me to have it done! Can anyone say "Resentment".... its a nasty word..that doesnt have to show its face to reek havoc in a family. He's worried I will be worse after surgery..I may be worse before surgery and they might not be able to correct it! I understand his point..but he doesnt walk in my shoes. Forget the physical aspect of all this for a minute...emotionally...Iam done...burnt...fried...caput. I think emotions went awol a long time ago...

Iam going to pray for peace...guidance..courage..renewed grace and mercy.
I need God to show me the way...Iam blind to the path I should be on...


May the Lord light my way..with words of wisdom and a new day.....

2 comments:

lauren said...

Hi Dee. Man it sound like you are going through hell. My name is Lauren and I too am on Long Island and in need of spinal surgery. I was rear ended when i was 7 mos pregnant and its been down hill since. Severe pain in neck shoulder arm hand. Numbness tingling, you name it. Going in soon and I am scared to death. The spine is no joke ya know? Any way I want to wish u well. I will say a prayer for u and your family. Take care. Youll be fine. Lauren4@optonline.net

Courtney said...

im sorry your family is not supportive of you, they are being selfish. this is a time when you need all the support you can get. my husband was really supportive. but we are so young right now and dont have too many financial obligations or responsibilities. just rent and food and medical bills. and we can afford it on his income.

dont have cold feet. if you are confident in your doctor, jump in with two feet. thats what i did. i already have improved alot. I dont know how much i will improve but its significant enough where i feel my life is worth living now. :-)

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