About Me

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

Me Brain

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, September 29, 2008

Many Thanks

Many Thanks to all the wonderful emails...with prayers and support! I got home late tonight from Long Island. Iam wiped out. Its been a very long day. Dr Verma is very nice. He explained everything in great detail. Which is exactly what I needed.

I was able to meet with someone at TCI today..Leigh...that I met online. We talked most of the day. Its always nice to meet new people to share your story with..and offer a listening ear. Its always a tough day to get through on your first visit.

I went to CT yesterday..to meet with the Chiari of CT Support and Awareness group. A couple of other NY chiari friends went with me. My wonderful husband was our chauffeur. It was nice to see everyone before my surgery.

My oldest son..Chris..will be posting here for me. To keep everyone updated.

Thank you again..for all the prayers, good vibes and kind words of support....it makes me feel all warm and fuzzy inside...knowing I have so many cheerleaders rooting for me!

Sunday, September 28, 2008

Tuesday is closing in....

Well...its getting closer. I went to CT today to meet with the Chiari of CT group. Two of my friends in NY car pooled with me to the meeting. Lacie from Albany and Nancy from Port Jervis. It turned out to be a nice day..considering the rain. I enjoyed meeting some new people at the meeting..and also seeing my friend Lisa from CT. She has evolved into my Chiari Sister..we talk almost daily.
I cant believe tomorrow is the 29th! I have to be in LI at 8am for 2 CT's, then preop registration and testing at 10am. I have an appointment with Dr Verma at TCI in the afternoon. My son, Chris and his girlfriend, Sam.. are going with me. We are meeting a couple of people for lunch. They are visiting from Indiana. Both are here for their first consult at The Chiari Institute. So the questions about TCI's proceedures are endless. I dont mind..thats what Iam here for. If I can ease someones mind by answering a few questions, then so be it. That is when I feel like there is a reason for having all these of the wall disorders.
Well Im going to try and get some sleep... I have an early morning. I want to say Thank you to everyone for all your prayers, support, concern and comforting words of kindness. It means a great deal to me.

Tuesday, September 23, 2008

Conquer Chiari Walk Across America Albany Ny

My husband, children, Sam (my son's girlfriend), Nancy (a woman I met locally that has CM) and myself attended the walk in Albany NY. It was awesome to see so many people together that know what Chiari is! We had over 200 people walk and $6000 raised. (not including online donations and sponsors!!!! Im amazed at how much money was raised. I would love to find out how much was raised from all the walks.

I was also able to meet someone I had been talking to online for quit some time. She is a sweetheart! She is going to ride with us to the chiari meeting in CT this Sunday.
Cant wait for next year!

Sunday, September 14, 2008

I have been debating wether or not Im going to attend the Chiari Walk this Saturday in Albany NY. I only have a couple of weeks before surgery..with lots of items on my to do list. This is also very important to me. This walk represents everything that I support. So I have decided that Iam going to make arrangements to attend the walk. Im hoping that my husband and children can also go with me. Wish me luck...

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........
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.....

Chiari Interview