About Me

My photo
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...

Sunday, November 30, 2008


In todays world with so much destruction, confusion, & tragedy...lost souls..not knowing what to do or how to cope with the chaos around us...who do we turn to..how to we go on with our "Normal " lives.. we don't. We need to "Want More"...we need to find peace...have hope... and comfort in our days to come. To expect better days...more Joy..a feeling of Belonging..not Longing. The Media is destructive to the "Hope" we all long for. Hope for Change.. coexistence.. Love...Belonging.

"FAITH" what its your interpretations of Faith? The definition of this word is to "Trust" or "Believe", Allegiance to a person: Loyalty...., Sincerity of intentions, "Firm" belief in which there is no proof, Something that is believed with strong conviction "Especially": A system of "Religious" beliefs, "Complete Trust"... "Without question". Think about that for a moment...read it..over and over...until you truely understand what Faith is all about. Now answer this question...in all honesty...what do you have Complete Faith in? without question????

This is not a simple question. In our human world I cant think of anything that fits this question.. Anything can change. Our jobs, family, friends, financial security, safety, health.....

I have been through a long list of trails in my life... my parents divorced when I was 4 months old, I was cared for by my Grandparents, found out when I was 12 that my Dad was not my biological father (a man which I had no relationship with, whom I thought was my cousin was my father), sexually abused by a neighborhood boy when I was 5, my Grandfather died when I was 11 (whom I was very close with), tried to commit suicide at 12, drinking and doing drugs during my teens, had my first child when I was 15, my Grandmother died when I was 19, Married at 20, had my second child at 20, my husband broke his neck ..was almost paralyzed..we had no health insurance.. no other income, third child at 23, fourth at 25, diagnosed at 34 with Arnold Chiari Malformation, Syringomyelia, Ehlers-Danlos Syndrome, Tethered Cord Syndrome & a long list of other dominoing health issues, All life changing..to say the least. Not to mention our mounting health costs.

Needless to say.... There wasnt anything that I trusted in this world. I had asked for many years... "WHY" ...... how much can one person take ....what is it that I did to deserve all of this ... will it ever change ..... I wanted to see things differently... I wanted and needed to Trust... and so does everyone else. It is a need that is designed to keep us searching for something to Trust. The problem is we trust in things that disappoint us over and over again. And soon our search..longing..need to Trust is just a small spark left in our hearts. That we forget about.... give up on.

I know this scenario all too well. Thankfully I met a women that rekindled that spark in my heart & I bought my first Bible at 30. I started watching a women minister on tv.. Joyce Meyer. It felt like she was talking to me every episode that I watched ( not to mention she is a "Huge Starbucks nut). We started going to church.. the first service we went to..the pastor mentioned Starbucks.. I knew I was in the right place. When I became sick on July 3rd of 2007, we stopped going to church, but I have never prayed so much in my life as I have in the last year. I realized a couple of months ago that I need to be in church, surrounded by other people that Believe. No matter how crappy I feel, I go to Church.

At a time in my life..when I thought I had been through everything.. I really felt as if I had no one. I do have a caring, loving, supportive husband who I have been with since I was 13, but having these health conditions that are all rare ; the search to find the right doctors to care for me, help me, "Believe Me" was and is a very difficult road to travel.

My last surgery was the most difficult and painful experience I have been through. At one point in ICU I had a reaction to a chemical used during the surgery.. I was on a morphine drip given every 6 minutes.. I was still in excruciating pain.. sleeping with ice packs on my head. I knew if I cried..it would hurt worse. I began to pray the Lords Prayer...

"Our Father in heaven
hallowed be your name,
your kingdom come,
your will be done,
on earth as it is in heaven.
Give us today our daily bread.
And forgive us our debts,
as we also have forgiven our debtors.
And lead us not into temptation,
but deliver us from the evil one."
In Jesus name, Amen

I repeated this prayer outloud...over and over again. It was night time..and my room mate was sleeping. But I felt someone stroking my head. I finally fell asleep.

Do you want to Trust? Have complete Trust without question? Faith that there is somewhere... where your belong? Someone who offers unconditional love? To rely on?

Whether you are already a believer or not... what are you doubting? Do you have anything to lose? Are you worried that you will be disappointed? Again? Possibly made fun of for believing in something that has no proof?

Do you get paid on Monday? Before you work? No. Do you get before you ask? No.

You have to believe to recieve.

Believing will change your life.

Put your hurts, disappointments, worries, obsticles, doubt, in Gods hands. You lose your peace when you are always trying to figure things out, fix it yourself, heal yourself, build your own bridges.

Let Jesus come into your heart to rekindle the tiny spark in your soul. So you can see the light to the Lord.

I promise you wont be disappointed. Im not.

Pray with me....

Lord come into my heart and heal my past wounds
Teach me the way to a Faith filled life. Forgive me for
Any past actions that were disrespectful to you.
Fill me with your Love. Renew my strength
Show me Peace. Guide me. Teach me how to grow in
Your word and become a better Christ like person.
In Jesus Name, Amen.

Welcome to a better Life from this day forward.

God Bless you

Wednesday, November 19, 2008

New Day

Today I went to The Chiari Institute. I developed a lump on my head.. towards the top..where the rod ended. It is sore and mushy. I didnt have a fever and it wasnt red. I also have had a rough couple of weeks. I have experienced some major headaches. Also some very bad dizziness..but only with movement. I had dizziness before surgery, but I could be sitting still and have it. When I get dizzy..I also blackout. I have to hold on to something until it passes. I have had issues with
sleeping... worse than before. So of course..this increases the chronic fatigue.
It didnt help matters when I was unable to get one of my doctors at TCI to call me back. I was very frustrated..to say the least. I have never had this problem with tci before. I saw Dr Verma today. As you can see.. Im sporting my new hardware in my xrays from today.
Well Dr Verma informed me that everything is healing well. That the lump is just a reaction from the foreign object (rod). That it will get better.. hopefully. If it continues to be bothersome..we could try injections. He doesnt feel it will get to that. The dizzines, sleeping issues, headaches,ect... are all still from the chiari/kinked brainstem. Even though the surgery released the pressure off my brain.. he explained that it has been like that for a long time. It could take up to a year to see the final results. I knew all this going into it. The problem Im having with that..is I felt better for the first four weeks after surgery...then I do now. I have been on the couch for 2 weeks..with the heating pad...taking pain meds/muscle relaxers on a regimen again... my neck is stiffer than a board. I had more range of movement at 4 weeks postop..than I do now. Its like Im in reverse. Today is 7 weeks postop. I know Im being impatient. Its very hard to keep patient when going through something so life altering.
Iam going to physical therapy 2x a week and Im getting a massage from my chiropractor once a week. Which does seem to help. So Im back to the waiting game "AGAIN". Except this is it...I have done everything they have ask me to try. I have exhausted all options.
I'am going to have to make a concious decision and let go. I cant control this. There is nothing else for me to do. I have decided to put this in Gods hands. He is the only one that can change the outcome.
We started going to church again a few weeks ago. I love going to church. It makes me feel more connected to the Lord. I realize now that he wants me to let go. He cant do any works in my life if Im always holding on..trying to do it myself. So I have decided to do what I can around the house.. enjoy what ever Iam able to do..day by day... and use the time Iam couch bound wisely. I feel now that I have wasted too much of my life by always rushing around. I cant wait until the weekend...I cant wait until next summer... I cant wait for my kids to get out of school... I cant wait..I cant wait.... I now have to wait...slow down... When you slow down..you notice more details about your life. Im begining to think that the details are what is important in Life. We all have goals ..achievements .. mile stones... I think its the journey we have traveled to get there that is what matters. The "how"..not the "what".
So in the coming days, weeks, months.... Iam looking forward to see how God is going to guide me, encourage me, restore me, heal me, bless me and show me how wonderful it is to not be the driver... but a passenger along for the ride.

Thursday, November 13, 2008

The Story continues.....

As the world turns... It's been a wild ride. This is enough of a roller coaster for me. I was feeling great up until a couple of weeks ago. I started having headaches again..about 2 weeks ago. I also stared with dizziness again, but it is different now. I have it with just movement. Its gotten worse in the last few days. I have almost blacked out on more than a couple of occasions. I emailed Dr Bolognese a few days ago, but my computer was down for a couple of days, so I wasnt able to check my mail. I noticed a new symptom yesterday morning.. so I decided to call TCI..I left a message. I recieved a phone call back at 5pm from the nurse. I explained that I now have a lump on my head..where I used to be able to feel a screw. It is mushy and it hurts. She said she would consult with the doctor and get back to me. SO this morning before physical therapy..I took a picture and emailed it to TCI. Its been a long day.... hopefully my lump is gone in the morning...

Chiari Interview