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...

Monday, February 9, 2009

New Beginnings

I feel like a busy bee. This year has started off like a marathon. I cant believe we are already in the middle of February. Its seems as though the last year and a half didnt go fast enough..and now I would like to slow it down. I want to enjoy every day of every minute. Iam looking forward to spring and warm weather. o be able to sit ouside in the sunshine a read...of couse while Im getting a tan..lol.

My husband, Bob, and I have been attending a bible study group since early December. It has been a great experience. We are reading a book called " The Reason for God" by Tim Keller. It is a fanominal book. It is about skepticism in todays society. It is a book that makes you question your questions and your answers. It has put us in contact with some great people. I also found it funny that 3 of us all have chronic rare illnesses..coincidence? I think not.

I was talking with a friend on the phone the other day about chiari..she asked about what it is..how it affects me & if Iam okay now. Its funny how simple questions at different stages in this journey will provoke a totally different response to the same question..2 days, weeks or months earlier. I told her that Iam as good as I want to be...and very Thankful. I wouldnt trade the life lessons I have gained in the last year and a half for anything. I can say this.. anyone who has experienced a life changing health issue.. has gained a whole new perspective on what Life is all about. That is not something I think is embraced the day you are diagnosed. It takes alot of reflecting..to "decide" to embrace the changes in your life. You cant live for today..if your stuck in the past. I chose to leave my past in the past..and move forward to move exciting furture moments and memories.

I'am working on being more of an advocate for Chiari and also helping other fellow chiarians fellowship with each other. Its nice to have people you email & chat on the phone with about the daily grind, but I think its a monumental difference to put a face & a hug with someone you lean on sometimes daily.

I have put together a Chiari get together this Sunday the 15th in Newburgh. I have approximately 25 people coming. Iam so excited I cant stand it. We are going to have food, some educational info & Chiari's Angels Foundation shirts. Iam planning on holding one of these every couple of months. Im hoping it will grow in size.

I have recently joined someone I met online in his start of a new Chiari foundation. The Chiari's Angels Foundation ..http://chiarisangels.org/index.php Jeff Domenic..the founder has been diligently working on the site. It looks great..kudos to Jeff. We also have someone else that has joined us..Brian Murphy. Brian has a support group on the east side of NJ.
This foundation is going to be very different than any other. Our number 1 priority is supporting the people affecting by Chiari & related conditions. We are looking for any idea's for fundraisers. We are planning a comedy club event in June. It will be in Levitstown NY. Iam looking forward to seeing how many people will be able to attend.
Iam feeling better. Still having issues with my blood pressure. Iam on a different medication. I go back t the cardiologist next week. Iam patiently waiting for an approval for another sleep study. Iam still having issues with sleeping, although not as bad. The cardiologist wants me to have it done..because the sleep apnea would affect my heart. I have the occasional aches & pains. My shoulder & hip have been bothering me. So I have decided to see a few more orthopedists for consults for my shoulder. I dont want to wait until Im in complete agony..to make a decision about a doctor. It will be more like.."when can you do it"..not "how many patients have you treated with Ehlers-Danlos syndrome?". I want to find the best option for a physician that is confident he can help me. Not.."Ive done lots of these surgeries".
I did start seeing a nutritionist..it is working wonders for me. I was tested for food allergies.. so I had to cut out dairy, coffee & bakers yeast. He then put me on some supplements. Some of which are just for support, while others are herbal medication. It has definately helped. I still have my medication in case I need it. I have to take my BP medicine. But for now Iam trying the herbal approach..so time will tell. I know my liver is happy..lol.
I hope everyone is having a great day..and I pray for everyone to find relief from any symptoms you many be experiencing. :)
Be Well


lace1070 said...

You are an incredible chiari advocate ~ I am so happy that we are friends and look forward to joining you in the quest to conquer chiari ~ looking forward to Sunday ~ a meeting of the brain tails ~ Hugs

Cindy said...

I just wanted to let you know that I look at your site occasionally and I was really encouraged by the link that you have listed for encouragement about Jeremiah.

Thank you for including that link--I needed that today!


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