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...

Thursday, January 31, 2008

Is today MONDAY...

It feels like every day is Monday..it's like that movie "Groundhog Day"..it's the same s%#*! everyday....GHhrrrrr.....

Tuesday, January 29, 2008

Unmet needs
Goals unattained
Issues unseen
Faced daily
Unmerciful obstacles
I need to rally
My strength
and Faith
Brought together
In the world we face

Sunday, January 27, 2008


This is my new episode..I started having chest pain on thursday..wasn't able to get into dr until saturday morning..it was hurting off and on.. with and without movement.. Dr diagnosed me with..Inflammation of the cartilage in the breastbone..or costochondritis..put me on prednisone..no lifting(like when am I lifting)..no reaching above my head..use muscle relaxer and pain meds as needed..apply heat as needed..Im wondering if this is the same thing I had last year in my ribcage..It happened 2x in a month..left side 6/7 rib was killing me..my dr said I had torn carilage..no lifting..hello..I worked at the post office dc...thats all I did..so the second time around I put myself on light duty..and it finally went away..some other people on ASAP (American Syringomyelia Alliance Project) said they have Rheumatoid Arthritis in there ribcage.. and another edser said they had something called pectus excavatum..so with this knowledge Im going to ask Dr Francomano about all this when I see her in April..One more ache to pain..

Thursday, January 24, 2008


Daily reminder
Of the life
I meet
My family
The ones observed
Half smiled face
Saving grace
In hopes of pretending
Im okay
Im perservering
A front
Walled Emotions
Unseen fear
Lost hope
Of hearing
You'll be okay
Tomorrows another day

Wednesday, January 23, 2008

Todays News

I finally was able to go get my blood work done for the Ehlers-Danlos testing...I spoke to Evelyn at Dr Francomano's late last week..and she was able to get oxford on the phone..and we're making progress..Dr Francomano called on Monday and said to make an appointment for all my kids..April 11th is first day she has available to bring them all in..better than nothing..were going to wait for the mra appeal until my test results come back...I've really been feeling crappy lately..my neck has been in spasms since last thursday..I went for my 2nd accupucture appointment on monday..so hopefully that will help..I had to take Tori to the neurologist today.. she is still having severe headaches..and the fluericet doesnt work..nor does anything else thats over the counter..They perscribed her periactin for her headaches...the dr reviewed her mri/mra and said she doesnt have chiari..although.. it still looks a little off to me..but Im no dr..Im willing to try the new medication and see what happens..if it doesnt work..I think Im going to make an appointment at tci..just to be on the safe side...

Saturday, January 19, 2008

Tori's report

Well..I picked up my daughters mri/mra report..and it says normal..I guess I should have a sigh of relief..but I just dont trust these local radiologists..her nl wants to see the films at our next appt..but that wont be for a couple of weeks..he wants to wait until all her results come in..she's also having an EEG ...so its the waiting game..I did speak to Evelyn at Dr Francomano's office..she checked into my blood work preauthorization...she said she is sending out my kit next week..and the dr is calling the medical director for appeals to do the mra's..so hopefully we're making some progress..I'll know on monday when I call oxford..Evelyn also apologized for taking so long..I'll keep my fingers crossed and hope to get things done next week..

Friday, January 18, 2008

Tori's MRI

This is my daughters mri from yesterday....not good... looks just like mine...terrible quality though...Im calling her neurologist this morning..and asking if they can please call as soon as they get the report..but as we all know..the radiologist may say its normal.. Im going to wait until her NL see's the films himself ( if the report comes back with no CM) to schedule an appt with The Chiari Institute..luckily we only live 2 hours away from Long Island... she is having at least 1 bad headache a week... not good..it is affecting her school work..and Im going to have to wait for some documentation before I can go to the school for help..it's bad enough to worry about yourself..surgery..pain..life long changes.. and the money to pay for the surgery..now its times two...Thank you all for your support.. one good thing came out of this..the radiologist accidently did her mra!! and she said they will still read it..so that made my day..still no word on my appeals for my mra and no preauthorization in the system for bloodwork..I havent had a return phone call from Dr Francomano either..so Im calling today..and if I dont hear anything..Im calling the hospital itself...I have a feeling that the office manager screens all th drs messages..what a week..my head and neck are singing la la...I had to take a muscle relaxer mid day yesterday..I was falling asleep...and I have pt today..thats just great...sorry Im rambling... your prayers are welcome.. and your support is greeted with open arms..no one else knows how this feels except the ones that have been through it...

Thursday, January 17, 2008

And the saga continues...

I took my daughter (Tori) in for her bloodwork this morning (7am)..and we have to go back at 3:30 for her mri..I called oxford this morning to see if the dr had called for the appeal for my mra's yet.. still nothing..and the lady in the office hasn't called in for preauthorization for my bloodwork yet either..my hands are tied..I have to wait for this lady..I posted a loooong story on ASAP about the episode I had with the woman in the office here it is :

Hello.. I saw Dr Francomano on 11/30 for ehlers-danlos..I was dx at tci in october..the dr ordered genetic testing and an mra of my head,chest and neck...she wanted the mra done for the possibility of the vascular type.. because of the results of an echocardiogram showing valvular regurgitation from the mitral and tricuspid valves.. I called my insurance on 12/10, they had not record of a request for any tests, so I called the drs office.. the woman that handles this tells me..that "she thought I was getting the approvals"..I explained..the insurance compny ( oxford) said that the dr needs to put in for approvals.. she said she would get right on it 12/17..I call oxford..still nothing..I call her back..she tells me it is sitting on the drs desk waiting to be signed 12/26..I call oxford..still nothing..I call the drs office..I informed her that I received a copy of the paperwork for oxford..I asked her if I needed to forward it..she said no..I just need to wait.. 1/..I call oxford..still nothing..oxford explained..it takes 48 hours to get into the system..SO I called the drs office..she tells me that she doesnt know why they havent received it..that she mailed it out on the 10th of December!!! I about went into orbit..I asked her how that is possible..since I spoke to her on that day and (refer to 12/10).. she tells me..well thats what I have noted in the file!!! So proceeds to tell me where she mailed it..guess what..WRONG ADDRESS!!! she says..that the one on the back of your insurance card.. so I look at it..wrong.. so after I give her the correct address..and phone #..she says she will get right on it..great..its about time 1/11 the drs office calls..she has case #'s for the mra's (no approvals).. but get this..she cant get a real person on the phone for the bloodwork because their not a participating provider..so she wants me to call oxford.. so I call oxford..they inform me that she just needs to enter the drs tax ID #..to get a person on the phone and then tells me that she shoiuld know this!! so I call the drs office back..give her the information..she said she would try again.. 1/15..I called oxford to see about approvals..for me..and then for my daughter..( she is 9..and has been having severe headaches..the nl wanted an mri and mra of her head and a heap of bloodwork..) Guess what..my mra's were denied...my daughters mra..denied..and still nothing on record for my bloodwork!!!Oxford tells me that there is not enough medical evidence to warrant an mra..YOU HAVEN'T HAD ANY BLOODWORK!!..and my daughters was denied because of lack of family history...they gave me a # for the dr to call for an appeal I thought forsure I was going to blow a gasket...so This morning I call the drs office..I ranted for a few minutes..not yelling and only said s@#% once..but letting her know that I was sick of doing her job and that I was the sick person, that I didnt have time to do her job ..that is why she works 9-5 and if she cant do her job.. that she needed to work in a different field.. because peoples health and lives lay in her hands..and it wasnt just about me..now it is about my daughter.. she tells me she is sorry I feel that way..and that she will try to call oxford again.. Iam at witts end..I was so upset..when I first called the drs office this morning..I got the receptionist on the phone..I was so upset (crying) I asked what I needed to do..she tells me that this lady is the office manger!!no one else to talk to.. I called back this afternoon to give the direct phone # for the appeal..I spoke to the recetionist..I also left a message for the dr to call me about the possibility of just using my insurances lab... no phone call back yet.. Does anyone have any suggestions..Is there anyone I can call..I gave oxford all the info they needed..they still need to talk to the dr.. I truely dont know what to do??? I need these tests done... Please..anyone know of someone I can call for help?? Thank you Dee_________________

I had a couple of responses...but no one else has let me in on any problem they have had.. at this point.. I dont even know who to call..I left a message for the dr yesterday..wanting to know if I can just get a perscription to have the test done through labcor..I havent heard a word.. I have a feeling the office manager gets the message first..great right!!! so anyway..today Ive got a splitting headache and my neck is in a knot..so Im plopped on the couch with the heating pad and took a muscle relaxer..maybe I should wait for the muscle relaxer to kick in and then call her???

Tuesday, January 15, 2008

Can Anyone Say FRUSTRATED..

I called my insurance company this afternoon to find out if my mra and blood work had been approved (for ehlers-danlos syndrome), along with my daughter's (Tori) mra and mri...My mra was denied and they still dont have any record of the bloodwork request..Tori's mri was approved, but her mra was denied due to "not enough medical evidence or family history"..I explained..If they would approve my tests, they would have family history!! The secretary at Dr Francomano's office has really dropped the ball here..the insurance company said that the doctor didn't give enough medical evidence for my mra..I gave them all the answers and even explained, that my cardiologist wants this test done..but they want to talk to the doctor..so NOW I have to wait for them to talk to the doctor to start the appeal..Ive been waiting for this test since November 30th!!!
And they still dont have the information on file for the bloodwork!!! It all rolls down hill. Talk about being frustrated!!!

Monday, January 14, 2008


Faith..not what we see...or hear..to be..believe in his word...his promises.. to never foresake us... love us from the start ..with all his heart...but will only come into our lives...if we have faith..and believe...you need to ask..to recieve..his blessings..to see...him work in your favor...he is our savior...he offers unconditional love...renewed grace and mercy...take a moment..to open the door...pray for forgiveness...encouragement and strength...it will change your life ..for enternity..forever and more..

Saturday, January 12, 2008

New Challenge

I finally decided to apply for social security disability. It was something I hadnt been able to face. I wasnt sure what classified me as disabled . Not to mention the fact, that it started at work, and I didnt fill out an accident report, for fear of loosing my job. I left work early and went straight to the er. Of course the er told me I pulled a muslce , go home and folow up with your primary. If I had listened to him, I would be in worse shape.So at any rate, Im also going for workmans comp. When I finally received the right dx, the drs informed me that it was my job that brought this out. I worked for the post office at a distrabution center. So it was all heavy lifting. Im faced with the aggravation of dealing with the federal government on both ends of the spectrum. Wish me luck!

Tuesday, January 8, 2008


Doctors, nurses,assistants, staff... do they care?? Or just pull a paycheck.. and leave it all there.. my pain is real.. felt every day...both emotionally and physically... who cares?? Im so frustrated, hurt, lonely and scared...scarred for life..beyond repair..no doctor.. medication.. anywhere.. cant fix me..inside or out.. .beyond repair..

Sunday, January 6, 2008


My Story..where do I start..from the begining..in the middle.. which part..the present is optimistic ..yesterday was blue..the past is muddy..unclear..uncertain..cant't change it..just start new..we have to choose a view..what eye's do you look through..are they rose colored..shaded..black or blue.. its not the picture we see..it is the view.. I choose now to see the flowers..the sky..the beach.. the snow..mountains up high..reach for the stars..thats why..lead..dont follow..you'll never get ahead..choose your own road.. you'll see..your own view..no one else's ..it's new..

Chiari Interview