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...

Sunday, February 22, 2009

As The World Turns

These are my girls. When I dont feel good..they are on my lap. Dont they look so cute with their sweaters on.

Well Iam almost 5 months post op from round 3. Iam doing well. I went a month with out a headache,,and then I have had 3 in the last week. Iam on day 3 of #3. Iam not complaining. A whole month of feeling almost "normal" is great.

I spoke to Dr Francomano last week..my geneticist. I wanted her opinion about my shoulder, blood pressure & orthostatic intolerance. She suggested I have another mri done on my shoulder to see if he damage has gotten worse. If so..surgery it is. She said that it could take up to 14 months for my brainstem to get back in the groove of things..so I should wait for a tilt table test. She wants to control my blood pressure with medication. My BP needs to be below 130/90. So this is the new goal.

Iam still waiting for the approval for my sleep study and now the mri for my shoulder. So Iam praying for patients.

I did speak to Dr Kula at TCI. I will be seeing him for my follow up next week , so that he can write my narative medical report for my federal workers compensation case. Of course its costing me a pretty penny for the report..but I really dont have an option in the matter. Im hoping to have new films taken..I anxious to see how everything looks.

The Chiari Mixer was a success. We had a total of 27 people...14 with Chiari. It was nice to meet people face to face. Iam hoping for double the people next time. The nutritionist Ive been seeing has offered to come and speak at the next get together..he said we could even make arrangements to have him meet with a couple people. Im really excited about this. I know he can help people. He has helped me.

I read a quote the other day that just stuck with me.. "Sometimes the road less traveled is less traveled for a reason" by Jerry Seinfeld. This could be taken in many ways. Some people are scared to take a road that is not shared..Or think what is the reason other people dont want to take this journey "it must not be worth it". I feel that it may be a harder path to follow..but nothing worh working for is ever easy. I think some people want everything to be easy..handed to them..or just luck. Drastic change... takes drastic measures. We choose the roads we travel..sometimes we are faced with road blocks or detours but we are the ones that choose new directions. What road are you on? are you happy with the scenery? and most important..is it taking you where you want to go?


lace1070 said...

Yeah for the road less traveled ~ how else would I have met such wonderful brain tails???
Good luck with your appt with Dr. Kula ~ I hope you can bring your 'A' game and get the documents that you need :) hugs ~ Lace

"Do not go where the path may lead, go instead where there is no path and leave a trail." ~ Ralph Waldo Emerson

Janice said...

Hi Dee,

I'm sorry to hear that you're still struggling. I hope this is just a small set back and that you continue experiencing improvement from the surgery real soon.

I wanted to comment on your girls. They are absolutely adorable. For Christmas, I got a little girl. I didn't realize how much comfort they could provide when you're not feeling well. I'm happy to hear that your girls help you manage the rough days, a little better.

My baby girl, Pinky, looks like your girl in the dark pink sweater. Pinky is a chihauhau/yorkie mix but I can see her beautiful little face in your little girl. Thank you for sharing the photo of your gorgeous girls.

Take care, you're in my thoughts and prayers. (((((hugs)))))

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