About Me

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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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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...

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.


lace1070 said...

Amen, sister! Knowing that u need to let go is the first step. Now totally letting go is another story ~ right? I am so encouraged and amazed how well you are recovering even if it's not fast enough for you :) I am so thankful to have met you and know that u will encourage me when i get impatient! I listened to this song the other day ~ reminded me of when i was in college and struggling so much to let go ~ http://www.youtube.com/watch?v=z0Dg-InE8VQ
Hugs ~ Lace

K's Country Corner said...

Hope that your healing process continues to get better and better! I keep you in my thoughts and prayers! Remember, God has a plan and His plan is so much greater than ours! :-)
Hugs & Blessings, Kris

LINDA said...

Well everytime I email you and I get no response I know to come to your blogg. Dee you must slow down and let the healing process work. Things take time. I know your not one to just relax and let things happen but your gonna have to be one of those Dee. Start by letting your family help with the things you can't do right now. Relax, use your heating pad, take a nap, let the body heal itself. Dont expect to do soo much sooo soon. You can't you will only make things worse. Trust me!! In time you'll be just fine. You have to be I need you to help me through this crap, I'm the basket case here remember???? I just wanted to let you know that I was thinking of you, and that I send much love, peace, health and the Lord your way. Call me when your feeling better.

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