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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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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...

Saturday, May 16, 2009




Have you ever felt like you were on a never ending climb up...going in circles?
That is the feeling I get sometimes. It just never ends. Ive come to realize that we all say "Life has been crazy"... "I cant wait until things get back to normal". I want to know what "normal" IS?
Iam begining to think..this IS the "normal".
I went to my local orthopedist this past Wednesday..for a follow up for my hip. My hip is still bothering me..and so is my knee. So. He wanted to do an xray of my pelvis. The xray showed a lesion in my pelvis & in my femur(near my hip joint). SO. He decided not to give me another cortisone shot..(thankfully)..because he wants an mri of my pelvis. He believes they are begnin..but given my history.. better safe than sorry.
So of course I came home and checked all this out. I found alot of information. One of the recommendations for diagnoses is..to follow up with an orthopedic oncologist. So. I found the top in the northeast.. Dr James Wittig at Mt Siani in Manhattan. He specializes in bone tumors,cysts & soft tissue tumors...both begnin & malignant.
I emailed him..gave him a run down of my history..explained that Iam going in for shoulder sugery..what was just found on my xray and what my symptoms are. He responded an hour after I sent it..at 10:30pm. He felt I should have these addressed before going into another surgery. Gave me his office number & recommended some tests before I come in. So. I have an mri on Wednesday and an appointment at Mt Siani on Thursday.
On the other hand.. I have to have an mri of knee for a suspected patella tendon tear. I follow up with my local ortho in a couple of weeks on that.
As you can see..things have been a little on the hectic side. Far from normal.
Its funny.. we were at bible group last night...lots of talk about suffering and patience. I feel like patience is the sand in an hour glass..and mine is slipping through my fingers. I was wondering how it is that Iam supposed to replenish this sand...and I realized something.. I cant supply this. It doesnt come from me. I can only pray that by the grace of God..it will just be there when I need it. and man do I NEED it.
Iam a tad stressed out over all this. Just to have to deal with a whole new issue..is enough to put me over the edge. Finding the right doctor..getting the right tests..just to make sure I get an accurate diagnose's. Educating myself about all this. Is there any correlation between this and anything I already have? Not to mention the emotional roller coaster it has put me on. Cancer.. I dont know if I could handle that..if that is what the diagnose's is. I know there are many people out there fighting it right now..and I commend them for it. But when is enough..enough.
Iam beginning to think that my enough..never ends. There is no "enough". What does enough truely stand for? Definition: adequate for the want or need; sufficient for the purpose or to satisfy desire. I definately have had an adequate supply of health issue's. The statement "sufficient for the purpose"..what is the purpose? Will I ever understand what the purpose is? I dont think so. As the days pass..and things change...I dont think I will ever know or understand what will be the end result from all this. I do believe that something good comes from something bad. But I guess only time will tell.
The funny thing was...that one part of the definition kind of hit home..enough:used as an interjection-used to express impatience or exasperation. Maybe Iam expressing impatience through a different avenue. One that I dont really see as impatience. Iam exhausted from all this. I think the fact that Iam not at peace..is what is robbing me of my being patient. I pray for peace. I hate having this knot in my stomach. I dont want to be in control. I dont mind being a passenger on this journey. I want to enjoy the scenery on the way.
A goal of mine is to focus on being patient & at peace. It is going to be difficult..but Iam going to pray about it & really try to relax and let God take the wheel.

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