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...

Saturday, March 29, 2008

Spring is almost here...

It's so nice outside..refreshing..I love spring.. winter weather is so dreary..Im feeling better..at least mentally..Ive started a couple more medications..one being cymbalta..I had a bad couple of weeks..emotionaly..all of this just became very overwhelming...a combination of new symptoms with doctors that just don't know what to do with me and not sure how to help me..made me feel lost..Im usually a cheery, happy, optimistic person..but I didnt even recognize myself...I was miserable..its bad enough when its physical..but I had to do something to get ME back..I had to be able to think straight..Ive had crazy symptoms lately..and numerous tests..I just had a balance test this week..that was fun..gave me an instant headache, made me dizzy, and nauseuos..all in one.. I have a sleep study next wednesday.. my doctors added a couple more perscriptions to the loop, so now Im taking, oxycodone, zanaflex, mobic, ambien, cymbalta,and valium. I hate taking medication. Is so toxic to your body. On top of all this, Im loosing my hair. Big clumps when I take a shower. My doctor thinks its stress, but he ran bloodwork to check everything anyway. My cardiologist has really dropped the ball. I talked to him 2 mondays ago, about the results of my abdominal mra. He tells me that he is going to have to call the radiologist because he only gave measurements of my aorta...and we need them for the inferior vera cava.. he was supposed to get back to me last wednesday.. I called left a message earlier in the week.. nothing..I call again yesterday..his nurse calls me at 4:30 and tells me that the doctor wasn't able to get the radiologist on the phone for a week..(he's right downstairs!) and that the doctor isn't confident with the radiologists report and that he's not sure what he's going to do..they will get back to me wednesday of next week..ITS been 2 weeks!!! I have an appointment at TCI this thursday...they are not going to clear me for surgery with all this going on..just ducky..I want to take the next step as soon as possible...so hopefully I have some answers this week..

Tuesday, March 18, 2008

Today's View

Ive been overwhelmed with appointments lately. Im very anxious to get to tci next month. I spoke to Ellen at tci on Friday. She wanted to go over my new symptoms. She also wants me wearing my cervical collar when I have these episodes ( shortness of breath, dizziness, and heart palpitations). My cardiologist faxed his report to tci on Friday. I had a hearing test a couple of weeks ago. The test showed that my acoustic reflex's are absent and I failed tone 3 in each ear. I have an appointment this Friday for a balance test. My neuro ordered a sleep study (April 1st). I started ambien about a month ago, which was giving me, exactly 6 hours of sleep. The neurologist wants me taking my muscle relaxer at night when I go to bed. He was hoping that it would help me sleep. NOT!!! Im so tired...both physically and mentally. I recieved a questionare from SSDI. It's 20 pages long. I have an appointment to go over it with my lawyer on thursday. I also received the contract from the workman comp lawyer that I hired. I at least feel like Im getting things rolling. Im having spring fever. I need nice weather. SUNSHINE!!! Im looking forward to summer...

Saturday, March 8, 2008

Sunflower6 Something bright and cheery...

Im feeling like I need a solo vacation to someplace
warm and sunny...for some R & R..a little rest and reflection..
I look back on how my life has changed in the last year...
Im a confident woman that always thought I could do anything..
All of this has brought me to the reality of how our lives can
change overnight..Ive always thought that..its unhealthy to depend
on other people...that no matter what..I can only truely depend on
myself...I can only take responsibility for me...I always tell my children..
that you can do whatever you want to do in your life...it just depends on
what sacrifices you want to make...and of course the bigger the sacrifice,
the bigger the achievement..if it was easy, everyone would do it..lately Ive
lost that feeling of being able to do anything... physically I was always fit..
even after 4 kids..people tell me all the time, "you look great for having 4 kids"..
I never felt like I was an average woman.. Ive replaced electrical outlets, sump pump,
spackled, painted, used power tools... I also attended Auto class in school.. I was
the only girl in the class, but that was what I loved to do.. I worked on my on cars
for years..replacing engines, transmissions, you name it..not the norm for a female..
whatever I wanted in my life..Ive always went for it..now I fell like Im a little more
hesitant..I applied for college last spring..before this nightmare began...so in the fall I had decided to go to school anyway...It was an adult geared setting..so I didnt have class everyday..I only had class every couple of weeks..I had always wanted to go and now more than ever.. felt like I needed to..I completed my first semester with an average gpa of 3.6 for three classes.. I went over the deadline for my intro psychology class.. I just finished my term paper this month...Im majoring in Psychology..I started to have more frequent headaches starting in December..and added symptoms..I decided to drop out of class for a couple of semesters when my daughter started with symptoms...she has had severe migraines and she started with a neurologist in Januaary..Ive had TCI evaluate her brain MRI..she doesn't have Chiari..but they do feel she has Ehlers-Danlos Syndrome...she is 9..Im hoping to get some answers at my genetist next month...I just find it hard to concentrait..I have all this issues on my mind..guilt..for the thought that my children may have to face the life changing issues that I now face..Im usually a very upbeat person..Im not a complainer.. but I have found myself since all of this..complaining...now that Im more concious of it..I try not to do it.. its hard when people are always asking.."How are you feeling?"..to which I reply.."Okay"..my husband gets upset when I dont tell him about new symptoms..but this consumes so much of my life now..why bother him with a new worry..I vent on here..and on ASAP..people on ASAP understand and relate to my frustrations..they are very supportive... someone who is not a survivor of this horrid infliction..can sympathize..but truely can't relate..I find great comfort from my fellow Chiarians..it makes me feel not so alone..I have never in my life... Felt so alone.. which is kind of ironic..Ive never been alone.. I met my husband when I was 13 and I had my oldest son (Chris) when I was 15..My husband and I have been together for 22 years this June..married 15 years April 10th...how I feel alone..is more than strange..I guess it is more of alone in my emotions..feeling lost in society.. people look at you and cant believe that you have all of these things affecting you..they dont see you at your worst..I use to be very social..going to lunch with friends, almost daily..going to parties.. diner with friends a couple of times a week..now..things are different..I miss normalcy in my life..although I dont think Im all that normal to begin with..Im hoping that with surgery..things will be better.. recoup some of what Ive lost.. Im too young for this..I still have goals that I need to attain.. I have been a survivor all my life..raised by my Grandparents..because my parents were unfit.. ..a teenage mother..I lost both my Grandparents as a teenager..not having a relationship with my parents..this made me grow up and be responsible at a young age.. I was a home owner at 19..married at 20 and had 4 children by age 25..Im 35..but feel like Im 50..I feel like God has a bigger plan for me..that somehow this whole experience has a purpose.. like Im meant to do something with all of this..not sure what exactly it is..but Im hoping along the way..it will light up like the northstar..for something to guide me on my journey

Friday, March 7, 2008

New Diagnoses

Well..its seems as though every time I go to the doctor..I find something new..I had my stress test this week..and went in on Wednesday to get the results of my echocardiogram and the stress test...the dr said that my heart was contracting properly..but that my inferior vecta cava ( see picture) is 3 cm wide..or 30 mm..normal size is 12-16 mm..so that mine is twice the size of a normal person...so..he took me into the echo room to check it himself...(after a few minutes of him figuring out how to use the machine)..he said that where it leads away from the heart, it looks normal...he said that most of the time..this is caused by something...it may just be the way that Im made...I also asked about the possibilty of POTS...(Postural Orthostatic Tachycardia)...he asked "what is that?"..so I had a brain fog moment..and forgot what it stood for..I said some kind of tachycardia syndrome...anyway..he wants an mra of my abdomen done..so I have an appointment friday 3/14...I also saw an ENT dr yesterday..she did an exam and said that its probably related to the chiari or syringomyelia or the cardiac issues..so she ordered a hearing test and then a balance test..to rule out any other possibilities...on the up side...we had a couple beautiful days this week..50 and sunny...Im itching for nice weather...

Tuesday, March 4, 2008

Todays view

Branches seen
Leaves falling
Like tea leaves green

Pictures of past
To be
Leaves lay in disarray

Chaos around our feet
Covered pathway
Which way is the street
Im not moving
I'll take a seat

Move in faith
No way to be seen
Step in fear
Of the unknown

We cant grow
If we dont sow
New seeds of harvest
To be reaped

Grow your branches out far
Sprout new leaves in hope
Soak up the sunshine
Push your roots down deep

Pray for strength
And Peace

Know that your not alone
In this field
Of the Unknown
Step in Faith

Chiari Interview