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, April 1, 2009

April 1st...

April... I enjoyed a beautiful day today. Warm & sunny. I went to Starbucks this afternoon and was really upset that the table and chairs aren't out yet. That is when I know it is spring. I asked one of the girls there..where are the tables? She explained that no one that works there has a truck to go get them out of storage..so of course I offered to go get them...well..not me personally..but my husband..or son..lol. SO hopefully my oldest son..Chris can go get them tomorrow. I need a place to sit and enjoy my frappuchino in the sunshine!!

I received a copy of my mra of my shoulder...lots of damage. I have a cyst..laberal tear...torn superspinatus...bursitus.. & a bone island. So Iam trying to get my surgeon in the city to schedule my surgery before I see him on the 20th. I dont want to be into the summer with my arm in a sling. It is bad enough to have stitches for 2 weeks & have to wait 8 weeks to get into the pool! So pray that they will schedule it before I meet with him on the 20th.

I did see my local orthopedist for my hip/leg pain today. Bursitus....cortisone shot..ouch... we shall see if it works. He did comment on my xray of my neck..he said they (TCI) did a fantastic job on my fusions! Thats a plus.

My pcp called me last night with my sleep study results...sleep apnea it is. So I get to go back & do a repeat with a cpap machine. I slept for 4.32 hours & had 97 arousals!!! and average of 18.1 and hour..approximately one every 3.3 minutes!!! My pcp said that is why Im always tired...ya think!!! Dr Kula at tci says this is probably part of the reason for my hypertension. So hopefully getting the sleep my body needs will help with my symptoms.

I did see my urologist today..he ordered the urodynamic test.Im scheduled for next Tuesday. He also wants a copy of my reports for the recent mri's & ct of my lower back...just to make sure there is nothing else going on. He said that the ehlers-danlos could be playing a part in this whole bladder issue.

My cardiologist ordered the tilt table test. I have an appointment next Thursday at 8am. I send the halter monitor back this weekend. Im anxious to get all the results for the cardiologist..he will have to clear me for sugery.

Im meeting with some chiari friends this Friday for brunch. It will be nice to see Jodie again. She runs the Northeast Chiari support group. She is organizing the Albany Chiari walk for September. I'am planning on helping any way that I can. So I really need to get all my health issues under control so I can be an asset to my fellow chiarians!! This is motivational for me.

Lately Ive been thinking.."What am I going to do?" I even ask my husband that. Its depressing to realize that Iam in no way shape or form..in control of my life. I mean..technically.. God is in control..but goals and aspirations as I once knew them are not what they used to be. So what now? I was hoping to try & go back to school this fall..even if I just took 1 or 2 classes...just for the sake of going. But Iam concerned about handling it...mentally, physically. I had taken a medical leave last year in January because my symptoms had gotten sooooo bad. Taking care of myself has turned into such a full time job.

Iam going to do some research about employment for disabled people. Maybe even some entrepreneur idea's...Im creative..maybe I can find something that will occupy a little of my time & make me a little income..(to help pay for all these medical bills!) Any idea's would be appreciated.


Janean said...


My name is Janean, I am a 32 year old mother of two. I have recently been diagnosed with POTS and have had to quit nursing school and resign from my job due to worsening symptoms. It is so nice to find someone out there who is willing to talk. This past week has been a really hard one to deal with.
I have also been told that I have something similar to Ehlers Danlos. I was born with two dislocated hips which still give me troubble, have had three surgerys on my ankle to keep them from twisting and had to have my right shuld fused to my back to make it stay in position. I also have major bladder issues and have required surgery in the past.
I wish you all the luck with your upcoming tests. I have recently had the tilt table test and hated it. My heart rate immediatley jumped from 52 supine to 143 standing and my blood pressure dropped to 52/23. I have been going to the Mayo Hospital for the past 2 weeks and they have finally told me it's not all in my head.
Thank You for listening.


Dee Hall said...

Hi Janean..
Sorry to hear you haven't been feeling well. I know the doctor's appointment's & tests dont help. It can sometimes be frustrating. But hang in there. It takes some time to find the treatment that works for you.

Be Well

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