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...

Tuesday, October 21, 2008


As you can see..I added a link for the Spoon Theory.. I think it is a great tool to use when trying to explain to family and friends what it is like living with a chronic illness everyday. My daughter was sitting here this morning while I was checking my email..and noticed this new link. She wanted to know what it was..so I read her the story. After reading it to her she came up with a short poem about spoons...and I thought I would share it.

As long as you wear the spoon of the day
You will be okay for the rest of the day

By Tori Hall

Tuesday, October 14, 2008

Getting Better

Im so excited.. I went to the store yesterday and bought all these new gadgets for my car so I can see all the blind spots without having to turn around. I drove today!!! Not far..but its a start.

We did go to Octoberfest on Sunday at Hunter Mountain.This is my husband,Bob, my youngest son, Mitchel, and me on the ski lift. This is my favorite festival of the year. I was determined to go.
Im feeling better everyday. But Im listening to my body, when it says it is tired, I rest. Iam sleeping through the night. Which makes a big difference. Im finally off the steroids. But Iam still on alot of meds. The muscle relaxers are what makes the biggest difference. I can go almost 6-7 hours without having to take the pain meds.
I want to say a BIG THANK YOU to all the prayers and kind words of support through all of this. It makes a world of difference for me. Im not close with my parents, and they both live on opposite ends of the country (Florida & California). I was raised by my grandparents and they both passed away when I was a teenager. So it has been my husband and I for the last 22 years of my life. Iam very blessed to have such a wonderful man as my husband.
Be Well

Friday, October 10, 2008

Today I was able to get my stitches out.. I will actually be able to take a regular shower on Sunday!!!!!! This is my scar 10 days post op. My neck still feels very stiff and sore. I know patients is a virtue. Im so anxious to see what the end results will be.

My friend Lisa wants to see what the front of my head looks like.. so here it is.My oldest son Chris..says I look like one of the spice girls. Not really what I would like to resemble at 35. But it is out of my eyes and off my incision.

This has by far been the hardest surgery of them all. But with Gods timing..Im sure it will be the most worth it. You always have to pay the most for something that is worth the most.
I start pt in a couple weeks..and then after the holidays I will follow up at TCI and schedule a consult with yet another orthopedist for my shoulder. So Im hoping January will be the month to get that fixed.
I have been praying and thinking of a few friends that are going through their own set of battles. Please pray for their pain to be relieved ,their faith to stay strong, and to find renewed strength and courage for tomorrow.... Keesha, Lisa, Rose, Lacie, Laura, Laurie, Caroline, Nancy, Erika, Alison, Amy joe, April, including all those who suffer from chronic pain.
Be Well

Tuesday, October 7, 2008


Well I made it... it has been a rough week. But all in all..Iam on my road to recovery. This is my new do..thanks to Dr Remy at North Shore. I did ask for a little of the back and to please leave a flap of hair for a comb over. Not quit what I asked for, but Im not about to complain. I want to say THANK YOU to everyones kind words of support and prayers. They are always welcome. I had a Craniocervical Fusion from c5 to occiput. with a minnie posterior fossa decompresion. That is what I was told, so of course Iam anxious to read the surgical report. I met some new friends while I was in there, April from TX, she had TC surgery. Rose from our CT group was also in the day after me for PFD. My room mate, who is not a chiarian, Sally, was such a wonderful women. I already miss our talks we had before bed. April, Sally and I had a great time the last few days of my stay. I believe I have made more life long friends.Its always nice to have a big refreshing glass of leamonade after being handed a pile of sour lemons....

I'm praying today is the day.

Well my mom was sposed to come home Monday but had a rough night Sunday.I hope she gets to come home because it's been a week today since her surgery.I guess its better for her to be there just incase something is wrong.But we'll know today and hopefully shes replying to everyone by tonight or tomarrow morning.

Friday, October 3, 2008

First off...

Thanks for the few that left comments,I can read them but I dont know much about this whole blogger thing so sorry for not replying.I talked to my mom a minute ago shes in pain but feeling good if that makes sense...They're moving her into a regular room and they took one IV out and removed her drain.I havent got to see her yet but my dads been back and forth as much as he can.He said that she looks good,but she always does cause shes beautiful and shes my mom:].Thanks to everyone praying for her and saying hi it really does mean alot to me,and im not one to share my feelings.I'll try to get on tomarrow to let everyone know more information.

Thursday, October 2, 2008


This is Chris,her son.I've never been on here but ill try my best with what and how her surgery went.She went in on Tuesday the surgery was about 5 or 6 hours long.At first she didnt need the decompression** but they realized when they were in they needed to do it.She also had the rods put in which went from the back of her skull down her spine which I believe was screwed into C4,C5,and C6.My dad is going down today(Thursday) to see how she is doing cause she hasnt really been able to talk on the phone but like 10 minutes with us.So i'll try my best to keep everyone posted on here and she should be back home this weekend if all goes well.

Chiari Interview