My Story

New Year 2011!

2010-12-27T10:57:00.003-05:00

As the New Year approaches.. I always seem to look to the past for change in the future. 2010 was another physically exhausting year. The past 3 years have the been the most challenging years of my life. For someone who was independent and headstrong in has been a humbling experience. Today I posted a quote on Facebook.. I thought it was words to live by when I found it .. and just had to share it. "Tragedy can make you bitter or better". SO TURE! In reading this.. I realized something.. it is our choice! Not our circumstances, our physical health, our finances, friends or family.. just a choice. I started reading a book that is so awesome! "Being Sick Well" by Jeffery H. Boyd. He shares the story of his wife who had 2 heart attacks, 2 strokes, diabetes, her kidneys failed, went on dialysis, had bypass surgery on her legs, eventually lost both her legs, in last years of her life she went blind and her hands became numb. She passed away at age 50. The point of her story was that she continued to be upbeat and optimistic through it all. She enjoyed life to the fullest. This book not only shares her story, but many others who share the same out look on life with chronic illness'. It is a must read for anyone who lives with a chronic illness or cares for someone who has a chronic illness. I consider myself to be someone who is optimistic. I dont dwell on "why me". Iam not a daily pity party. I ask what is it that Iam supposed to do with it? I think that falls in the "better" part. I feel I have changed and grown as a mother, wife and friend. It clarifies everything in your life. Whats important and whats worth your time. It maginifies what used to be the "small" things in life. You appreciate the days that you feel good and the days you dont. I also have a strong faith. I believe God loves me, renews my strength and is merciful. We all need to believe in something. Its finding that something that is a constant quest we are all on.. including the healthy people. So in this "New" Year.. I pray that you will ponder that question.. and seek it out. Happy New Year!! May you be blessed with loving friends and family!

2010-10-15T21:27:00.001-04:00

Snowflakes are one of nature's most fragile things, but just look what they can do when they stick together. ~Vista M. Kelly

October 14, 2010

2010-10-14T07:29:00.003-04:00

I have had dreams and I have had nightmares, but I have conquered my nightmares because of my dreams. ~ Dr. Jonas Salk

2010-10-13T18:08:00.003-04:00

So where do I sign up?? I would be on the next plane... Who's game? I know there are so many of us that deal with so much "crap" when it comes to Chiari (and related conditions). It's like it never ends.. doctors, medications, alternative treatments, insurance companies, social security disability, workers comp, office personal, friends, family.... its always a battle. Fighting for the proper care, to be heard, understood and not pitied. No matter which way you turn... its not easy. It almost seems we are a special breed who have to be strong.. or do we? Is it strength, bravery, courage, guts, faith, hope, patience or grace.. that keeps us going? Is it our family and friends?...the people who care for us..support us.. love us, fellow chiarians or God? What makes a person with chiari tick? Is our trials, tribulations, testimonies, or longing to make a difference in the world of Chiari? I dont know if any of us know for sure.. need to know or want to know.
I do know Iam a survivor. I survive everyday. I survive every surgery. I survive my symptoms. I survive arrogant doctors. I survive ignorant nurses and office personal. I even survive hurtful comments and advice. I survive. Survive~to continue to live or exist after the death, cessation, or occurance of, to endure or live through (an affliction, adversity, misery, ect), to get along or remain healthy, happy, and unaffected in spite of some occurrence. Synonyms~ Persist, Succeed, Outlive: refer to remaining alive longer than someone else or after some event. Survive usually means to succeed in keeping alive against odds, to live after some event that has threatened one. Outlive: stresses capacity for endurance, the time element, and sometimes a sense of competition. It is also used, however, of a person or object that has lived or lasted beyond a certain point. Im not sure about you, but reread that again, how many times does it say "live"? That is what we do... L~I~V~E!!!! We are supposed to live... even though we have chiari. Survive.. even though we have chiari. Make a difference.. even though we have chiari. Share you story, listen to fellow chiarians challenges; offer love, compassion and comfort to people who are hurting. You know what they are going through. we are all in the same boat. step out of the boat. Reach out and live.

Conquer Chiari Walk Across America

2010-09-16T19:05:00.005-04:00

This month is Chiari Malformation awareness month. It is also the Conquer Chiari Walk Across America. People from all over the country in 30 different locations will be walking to raise money for research this Saturday September 18th . This is a monumental event. Last year $250,000 was raised and 90% went towards exciting new research! That is awesome! Research is funded only by private donations. I have walked the last 2 years in Albany NY. I will be walking in CT this year. I have raised $1000 towards this years walk. It is a great opportunity to meet other people with Chiari. Chiari is a debilitating, life changing condition. People who survive Chiari everyday are reminded of what a "true survivor" really means. A true survivor is someone who doesnt let Chiari become who they are. We hope that through research people will be helped in the future. That .. Chiari will be recognized as a "chronic" condition ...that can be disabling. I believe that Chiari has seasons of wellness and illness. When we are pushing through a season of illness.. we find support through our friends that share the same daily challenges of Chiari. Please help support us and find alternative treatments for Chiari. Our lives depend on it. You can click on the title above for the link to make a donation. Thank you.

March 2010

2010-03-17T22:29:00.004-04:00

As we head into Spring.. Iam so looking forward to nice weather. Warm sunny days and sunshine. It has been a long cold winter. I have been on an emotional roller coaster over the last couple of months. I recieved fantastic news Friday.. I won my workers compensation case! All I could do is Praise God & cry. It has been a long hard road. It is a humbling feeling to realize you are disabled. ..and even more humbling when other people agree. I cried when I filled out the application for Social Security Disability. I also won my SSD in 4 months..in 2008. I dont think anyone says when they are little.. "when I grow up I want to be disabled". You almost feel like you are broken...

A couple of months ago I followed up with a Orthopedic Hip specialist for my hip pain. He confirmed the diagnoses for Hip Impingement and a labral tear. It is a big surgery to have it corrected..worse than hip replacement. So at his recommendation.. I followed up with a orthopedist who specializes in knee caps for patella instability. I have been having issues with both my l/hip and r/knee for sometime. But other health issue's took precedence. My knee has had water on it since last year. My hip specialist is recommending having the knee surgery first..in hope to relieve some of the hip pain. Iam crossing my fingers..

Iam going in for knee surgery this Friday. It is a big procedure. I have patella instibility...and some damage from the instibility. So I will be in a immobilizer and wont be able to put any weight on it for 6 weeks. It is both arthroscopic and an open procedure. Its a 2 part surgery. The tendon at the bottom of the knee cap will be realigned and reattached to the tibia with 2 screws. A tendon will be made with cadavar tissue and attached to the side of the knee cap to stabilize the side to side motion. Just another battle scar.

Iam hoping to be able to attend the Ehlers-Danlos National Foundation conference in July. It really depends on how my knee is and how Iam feeling otherwise. I would like the whole family to go. I think my chilidren would benefit from meeting other children with EDS. They feel different from other kids. It makes my heart ache to think they feel damaged. I know that feeling.

Im sorry it has been so long since I last updated my blog. I have been kindof side tracked. Issue's with friends.. doctor appointments.. economy effects on my husbands business.. aches & pains with the cold weather. I dont mean to complain..just explaining where my mind has been.

We have been going to Church regularly for the last few months. I have also been going to a Women's Bible study on Tuesday's. I have been learning how to "really" lean on God. Praying about every obstacle in my life. Asking Jesus to heal my old hurts. Seeking divine guidance. Feeling like there has to be something else..asking what do I do now?

I will update my blog after my next appointment with the OR. Iam having the surgery in NYC at the Hospital For Special Surgery. This is where I had my shoulder surgery. Hopefully I will come home the next day. Please pray for the surgery to be successful .. a speedy recovery...and my family..who take such great care of me during these endevers. Iam so Blessed to have such a loving family..

2010

2009-12-31T00:19:00.004-05:00

I cant believe 2010 is here! In the last few days I have been thinking about where "I thought" I would be in 2010. Definitely not where Iam. If someone 10 years ago..or even 3 years ago..would have told me that I would be on Social Security Disability.. have 4 surgeries in the last 2 years...be diagnosed with 4 rare disorders and have my world turned upside down... I would never have believed them! But as I have learned in the last 2 and a half years ... you adapt. And if you dont.. you live in denial. Honestly..that is easier said than done.

I have a little block of wood in my living room that simply says "Be Thankful" on it. I bought it to be a daily reminder of what really matters. Knowing that everyday..every moment..every experience we have here on earth is a gift from God. It is a blessing we are given. We may not always think it is a blessing..but sometimes what we dont like... is Gods way of shaping us into better people. It builds character. These experiences help to give us tools to live life fuller and more fulfilling.

Iam sarting to put together a list of New Year's resolutions. Thinking of what some of them have been in the past and what I hope the future will bring. How I may or may not have control of this year's events. How I may handle "change" in the New Year. What priorities have changed... reprioritizing. Soul searching for what I want out of life in 2010.

New Years resolutions are defined as... a commitment that an individual makes to a project or the reforming of a habit, often a lifestyle change that is generally interpreted as advantageous.
That being said..what projects do I want to tackle, what bad habits do I need to break, and what unconventional lifestyle changes do I dare make?

I would like to wish everyone a Happy..Healthy..Safe..Prosperous..Successful.. Adventurous..
New Year!

I will keep you posted on my New Years resolutions.....

Fall is Here

2009-11-15T15:31:00.007-05:00

Where did this year go? How does everyday feel like S-L-O-W motion and weeks..months..go by so fast. What have I done this year? Well. Im not really sure. I did go to the Chiari Walk Across America in Albany NY in September. Which was great. Its so nice to see so many people make it a priority to bring awareness to Chiari.

My health this year..has been up & down. I was officially diagnosed with POTS or Postural Orthostatic Tachycaria Syndrome in August. By a fantastic doctor in Manhattan. Dr Weimer at Columbia Neurological Institute. He specializes in Dysautonomia. I was prescibed mestinon..on a "as needed" basis. It makes everything crisp & clear when I have what I call "episodes".

I was also very fortunate to be referred to a cardiologist that specializes in people with connective tissue disorders. He is at NY Presbyterian Hospital. I was diagnosed with an Enlarged Ascending Aorta. I go back in December for a follow up. To find out if we have to add medication as a preventative. It is 3.6 cm. I would need surgery if it reaches 4.5cm. That is a smaller size for an elective surgery because of the EDS. I will deal with that if the time comes.

Iam just about finished with physical therapy for my shoulder. I had a set back with the recovery of the stabilization surgery. My shoulder started to pop with movement. That means Iam experiencing some instability. Its not painful.. but Iam back to isometrics for pt. Iam following up with Dr Rodeo in December.

I made a recent visit to see dr Verma at The Chiari Institute. I have developed a lump/knot on the back of my head. It sits at the base of my skull.. just off center to the right. I had 3 mri's..2 ct's and 8 xrays. All to tell me..that my hardware looks good. That he thinks it is just the way it is fusing. Although..he was concerned about my c6-c7 disc. Its not looking so great. I knew this in March when I saw Dr Kula. But Dr Verma is concerned about the numbness I get in my right arm and the grasping issue's I have with both hands. So It looks like I will need an emg to see what is going on. He did say that he would be willing to try disc replacement instead of fusing another level. Hopefully preserving what mobility I have.

Overall..Iam doing good. Feeling a little down about the Holiday's. I ususally love Thanksgiving & Christmas. Not really feeling it this year. Although I have alot to be thankful for.

Last month I had to make an emergency trip to Florida. My Dad had emergency open heart sugery. He had his aortic valve replaced. He is doing great. While in Florida my husband was told he would need a Cardiac Catherization to possibly confirm and treat a suspected blockage in the right lower coronary artery. That artery is on the heart. My husband didnt realize that...but I did. To make a long story short..all is well. They found that he has sort of..a defect in the dynamics of the coronary arteries..that cover his heart. So no stints..no blockages.

Iam looking forward to the "New" year. Hoping it brings new positive experiences and friends along the way.

Summer is here

2009-06-23T11:47:00.003-04:00

Its almost my 2 year anniversary for when this all began... July 3,2007. As I look back at the last 2 years..Iam amazed at all I (and my family)have been through. This has been an era that has changed my life forever. I often find myself thinking of how my life will be in the future...how it was in the past..and how I live in "Today".

I wouldn't trade the experience's I have been through for anything in the world. They have shaped me into a better person. I have made many friends along the way..some of which I know are life long.

Since my last post I had shoulder surgery...June 5th. It was not what I expected. I had rotator cuff damage, torn superspinatus (2 cm), laberal tear & a cyst in my bicep tendon. He also performed stabilization surgery on the capsule for instability. I have to wear the sling for 6 weeks & I start physical therapy after the 3 weeks. I have 4 pages of instructions for pt...it is very detailed instructions on phases of range of motion with degree's of movement...minimum of 20 weeks. Iam slowly progressing.

I finally recieved 1 of the narrative medical reports for my workers compensation case. Its very humbling to read a breakdown about your health. Iam looking forward to just getting the process started. After everything is filed..it is in my lawyers hands. My medical bills are mounting..so Iam hoping to get it settled before I have to pay it in its entirety.

Iam coming to the realization that I may not be able to go back to school. Even if Iam able to take one class at a time..what exactly will I be able to do that fits within my limits. This is hard for me to accept. I really want to become a licensed mental health counsler. Iam worried that even if Iam able to complete the required classes..how would I be able to be reliable for the people I would treat. Iam just going to pray about it..and wait to see what the future will bring.

Iam attending a chiari meeting this Sunday..looking forward to meeting new fellow cmers. Iam going to look into setting up a monthly chiari meeting in my area.I have found 10 of us locally!! I think its important to have a support system that can relate to what you are going through. This will also give me something to keep me busy in my free time...you know..between..doctor's & pt...

I hope everyone is having a pain free day!!!

2009-05-16T22:07:00.002-04:00

Have you ever felt like you were on a never ending climb up...going in circles?

That is the feeling I get sometimes. It just never ends. Ive come to realize that we all say "Life has been crazy"... "I cant wait until things get back to normal". I want to know what "normal" IS?

Iam begining to think..this IS the "normal".

I went to my local orthopedist this past Wednesday..for a follow up for my hip. My hip is still bothering me..and so is my knee. So. He wanted to do an xray of my pelvis. The xray showed a lesion in my pelvis & in my femur(near my hip joint). SO. He decided not to give me another cortisone shot..(thankfully)..because he wants an mri of my pelvis. He believes they are begnin..but given my history.. better safe than sorry.

So of course I came home and checked all this out. I found alot of information. One of the recommendations for diagnoses is..to follow up with an orthopedic oncologist. So. I found the top in the northeast.. Dr James Wittig at Mt Siani in Manhattan. He specializes in bone tumors,cysts & soft tissue tumors...both begnin & malignant.

I emailed him..gave him a run down of my history..explained that Iam going in for shoulder sugery..what was just found on my xray and what my symptoms are. He responded an hour after I sent it..at 10:30pm. He felt I should have these addressed before going into another surgery. Gave me his office number & recommended some tests before I come in. So. I have an mri on Wednesday and an appointment at Mt Siani on Thursday.

On the other hand.. I have to have an mri of knee for a suspected patella tendon tear. I follow up with my local ortho in a couple of weeks on that.

As you can see..things have been a little on the hectic side. Far from normal.

Its funny.. we were at bible group last night...lots of talk about suffering and patience. I feel like patience is the sand in an hour glass..and mine is slipping through my fingers. I was wondering how it is that Iam supposed to replenish this sand...and I realized something.. I cant supply this. It doesnt come from me. I can only pray that by the grace of God..it will just be there when I need it. and man do I NEED it.

Iam a tad stressed out over all this. Just to have to deal with a whole new issue..is enough to put me over the edge. Finding the right doctor..getting the right tests..just to make sure I get an accurate diagnose's. Educating myself about all this. Is there any correlation between this and anything I already have? Not to mention the emotional roller coaster it has put me on. Cancer.. I dont know if I could handle that..if that is what the diagnose's is. I know there are many people out there fighting it right now..and I commend them for it. But when is enough..enough.

Iam beginning to think that my enough..never ends. There is no "enough". What does enough truely stand for? Definition: adequate for the want or need; sufficient for the purpose or to satisfy desire. I definately have had an adequate supply of health issue's. The statement "sufficient for the purpose"..what is the purpose? Will I ever understand what the purpose is? I dont think so. As the days pass..and things change...I dont think I will ever know or understand what will be the end result from all this. I do believe that something good comes from something bad. But I guess only time will tell.

The funny thing was...that one part of the definition kind of hit home..enough:used as an interjection-used to express impatience or exasperation. Maybe Iam expressing impatience through a different avenue. One that I dont really see as impatience. Iam exhausted from all this. I think the fact that Iam not at peace..is what is robbing me of my being patient. I pray for peace. I hate having this knot in my stomach. I dont want to be in control. I dont mind being a passenger on this journey. I want to enjoy the scenery on the way.

A goal of mine is to focus on being patient & at peace. It is going to be difficult..but Iam going to pray about it & really try to relax and let God take the wheel.

Warm Weather is Here!

2009-05-01T20:58:00.003-04:00

Im loving the warm weather! Its a little dreary..but its still warm. Better than snow! Im really looking forward to this summer. Im focusing on getting things done around the house..and just tying up loose ends.
It seems this year..we have had alot of legal stuff to deal with. Paperwork to find..file..fax. This drives me nuts! But at least I feel like Im getting things out of the way.
Ive had a few doctors appointments...getting some tests out of the way that I have to have done for preop approvals. I started physical therapy for my knee. Dr Rodeo from Hospital for Special Surgery looked at my knee..he says I have instability and recommends physical therapy.
Im scheduled for shoulder June 5th. Exactly 1 year from my Anterior Cervical Discectomy w/Fusion. Happy Anniversary! The surgical coordinator told me that they would keep me for at least 48 hours because of the fiber optic intubation and the recent daignoses of sleep apnea. She also said Iam a complex case. Just my luck. I was hoping to ride home with my nerve block still in full force. So Im going to shoot for a Sunday departure. This way the traffic wont be as bad. The FDR is horrendous...bumpy & always backed up.
I feel like I have been on a marathon lately. Just really busy. I did get to meet with my friend Lisa last Saturday. We met in Danbury CT..at the mall. I had a great time. We talk almost everyday. I dont get to see her often. We met at TCI..we were both there for our first consult. So we have traveled this journey together.
The CT chiari group is planning a get together the end of May. We should have a good turn out. It would be nice to put some faces to the emails. The group has really grown. Its amazing to see how many people have joined. The more people we have..the bigger voice we have.

April 1st...

2009-04-01T02:46:00.002-04:00

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.

Aches & Pains index

2009-03-29T16:51:00.002-04:00

I wanted to post this tool that was brought to my attention by a fellow blogger..Thank you Lacie :)
I think this is awsome.. it is a weather link that you enter your zip code and choose aches & pains from the tool bar. It tells you how the local weather will affect you physically!!! I think this great!! I will also post this on my links.. http://www.weather.com/

Spring Has Sprung..so where's the sunshine?

2009-03-29T15:05:00.003-04:00

Well here we are going into April already! Its been almost a year since my tethered cord surgery!! Last year seems to have went by in a flash. Not that Im complaining..2009 has to be better.
I went to The Chiari Institute on Wednesday the 25. I met Dr Kula..who will now be my neurologist at TCI.. it was my follow up for the Craniocervical Fusion and to meet with Dr Kula for the narrative medical report I need for my federal comp case.
Dr Kula was very thorough..we went into the office at 4:45 and didnt get out until 9pm! Long day to say the least. I had 4 mri's & a ct that day at Mahasset Diagnostic Imaging. We went over my entire file ( or should I say 2!)..went over all my current symptoms..and how we were going to treat them. My syrinx did collapse..woe hoo!!.. but as he said...it does damage that doesnt always reverse after flow is restored. Thats why I have loss of sensation on my left side. We also spoke of the dizziness..balance..blood pressure issues..and how my cardiologist is treating them. My low back/leg pain & numbness...and hip/left leg pain. Oh..and the headaches.
He ordered a slough of tests...tilt table..ct of lower back..xray of neck and lower back..blood work.. repeat urodynamic & follow up with urologist... follow up with orthopedist..and the best is a prescription for support knee highs & some funky girdle to constrict my veins!! for the dizziness! Thats real sexy in the summer! He also wants a copy of the recent sleep study I had done. So left with alot of homework.
I had an appointment the next day for an mri arthogram of my right shoulder..so I made it an all day project..and got the xrays & bloodwork done while I was there. I have an appointment tomorrow for the CT of my lower back. Follow up with the orthopedist on Tuesday and Urologist next Tuesday.
Iam very anxious to get the results of my arthogram & sleep study tomorrow. My pcp was on vacation..hopefully he will call tomorrow. My shoulder has really been bothering me..so Im almost positve what the next step is.
My cardiologist is ordering the tilt table test. Iam still wearing the halter monitor for my heart..so Im not sure if his is going to wait until it is done to do the tilt table. I guess I will find out tomorrow. The nurse said that "Nothing Alarming" has been recorded. Next they will tell me..it is all in my head!!! We shall see.
As you can see..Ive been a little busy. I feel like having all these obsticles in my life..is like having a full time job! I started acupunture again a couple of weeks ago because my chiropractor was out of commission with back surgery!!But he is back now. Dr Kula said I should still be doing my exercises for my neck..everyday..plus massage every week. My neck has been in knots..which doesn't help my headaches & shoulder. So I have been trying everything I can to help ease the muscle tension.
Im sorry if I missed anyone's emails...I have been trying to catch up on them and clean out my mailbox. So if I didnt respond..please resend it..it may have gotten lost in limbo.
I hope everyone is enjoying our spring weather..(even if it is rainy)..its a sign that nicer weather is on its way..hang in there.

The High Road

2009-02-26T23:58:00.003-05:00

As you can see..this is not a beaten path. The high road is less traveled for a reason. That being said..its sometimes a lonely one.

Iam feeling a little better this week. My head is not screaming at me..which is a plus. But my neck & back are now beating me over the head. So I have decided to go back to acupuncture. My chiropractor is still out of commision recovering from his own back surgery. Of course I think he should have scheduled his when I had mine so he would be ready for me when I needed him...lol. He really does help me. I know that being adjusted is not good for us Edsers..but it sure does make life more managable.

Iam still awaiting for approvals for my sleep study & an MRI of my shoulder. I know once I get the shoulder mri..it is inevitable that my shoulder will be next. It is bothering me more & more everyday. As my chiropractor said ..a tear is not going to just get better on its own..especially when you are constantly pulling on it everyday. So Iam prepared to face round 4. I would rather get it over with before summer.

Iam also informing all my friends that Iam no longer affiliated with The Chairi's Angels Foundation. If you have any questions for the foundation..you need to contact the founder..Jeff Domenic..at ChiarisAngels@aol.com.

I also want to let everyone know that Iam planning another Chiari Get Together & would like to see who would be interested. Iam looking at April 5th. Please email me with any questions DeeHall1@aol.com .

Be Well

As The World Turns

2009-02-22T00:35:00.005-05:00

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?

New Beginnings

2009-02-09T22:09:00.004-05:00

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

Dee

Happy New Year!!

2009-01-17T02:07:00.008-05:00

I thought this was hysterical! Some times I wonder if Im on that bus! Anyway.. Im sorry I havent updated in a while. Its been a hectic holiday. Iam so glad to see the New Year.

Iam still recovering from surgery. My hair is growing. The scar is healing. I do feel better in many ways. In other ways, things have just shifted. I dont have constant headaches or pressure. They come and go. I have had one for 4 days now. But for the most part they are not as frequent.

I have been having issues with my blood pressure. I was taken off the beta blockers back in October. My cardiologist felt I may have been over medicated after surgery. Im having dizziness when standing. It feels like Im going to black out...and then the lights come back on. My cardiologist put me on a medication for POTS (Postural Orthostatic Tachycardia Syndrome) to see if my symptoms improved. They did..but my blood pressure went up. He adjusted my dosage 4 times. It was still high. I had stopped the medication on Monday after seeing my pcp.

I went to a new cardiologist on Wednesday. My bp was 144/97. He ordered bloodwork, put me on 2 new medications and ordered an echocardiogram. He wants to see my again in 2 weeks.

The medication does help with the symptoms. So it seems to be POTS. He may order a tilt table test after my bp is under control.

I had both of my youngest children at the nl last month. My youngest son Mitchel is showing symptoms..headache, dizziness, visual diturbances, legg weakness, balance problems. My daughter is still having headaches. The doctor ordered mri's and mra's. Im no doctor..but they didnt look right to me. The nl said no, but I recently found out that someone I know went to this same dr (after a confirmed dx of chiari) and he told her she didnt have chiari!!! So of course I want a second opinion.

Iam working on putting together a Chiari fundraiser in June. I live in the Hudson Valley, NY. It will be a barbacue with chiari awareness items, raffles, gifts..ect. I will post more info as I make more concrete plans. Iam very excited about it. I love meeting new people who are affected by chiari. Its almost like an unwritten bond between people who share common challenges in life.

You are always hearing about new idea's for common obsticles we face daily in our lives. People are always drawn to people's stories of success. "How did they do that?" "What can I do differently to accomplish the same outcome." " Why are they so satisfied and happy?" For the average person...it is hard to do this. We as chiarians are somewhat of a rare breed. This makes it even more of a challenge.

Iam starting to see that we are all warriors. It is a constant fight. In every arena we enter. Whether it is finding the right doctors to treat us, to social security disability, family & friends understanding our condition and how it places unseen challenges, insurance companies paying for the right treatments, and learning to become more dependent when we need to be. Patience and perseverance have to go hand in hand. If you aren't patient you will be miserable while you are persevering. You will lose focus on what is really important.

I pray that everyone is having a painfree day. Please share any idea's you have for fundraising. If you would like to come join us, please contact me for travel info and directions. It looks as if we are going to have it the2nd or 3rd Sunday in June.

Be Well
Dee

My 2 Minutes of Fame

2008-12-02T20:21:00.007-05:00

Here is the video of myself and a few of the other members of the CT Chiari group. We were interveiwed by Channel 8..

Faith

2008-11-30T08:54:00.009-05:00

In todays world with so much destruction, confusion, & tragedy...lost souls..not knowing what to do or how to cope with the chaos around us...who do we turn to..how to we go on with our "Normal " lives.. we don't. We need to "Want More"...we need to find peace...have hope... and comfort in our days to come. To expect better days...more Joy..a feeling of Belonging..not Longing. The Media is destructive to the "Hope" we all long for. Hope for Change.. coexistence.. Love...Belonging.

"FAITH" what its your interpretations of Faith? The definition of this word is to "Trust" or "Believe", Allegiance to a person: Loyalty...., Sincerity of intentions, "Firm" belief in which there is no proof, Something that is believed with strong conviction "Especially": A system of "Religious" beliefs, "Complete Trust"... "Without question". Think about that for a moment...read it..over and over...until you truely understand what Faith is all about. Now answer this question...in all honesty...what do you have Complete Faith in? without question????

This is not a simple question. In our human world I cant think of anything that fits this question.. Anything can change. Our jobs, family, friends, financial security, safety, health.....

I have been through a long list of trails in my life... my parents divorced when I was 4 months old, I was cared for by my Grandparents, found out when I was 12 that my Dad was not my biological father (a man which I had no relationship with, whom I thought was my cousin was my father), sexually abused by a neighborhood boy when I was 5, my Grandfather died when I was 11 (whom I was very close with), tried to commit suicide at 12, drinking and doing drugs during my teens, had my first child when I was 15, my Grandmother died when I was 19, Married at 20, had my second child at 20, my husband broke his neck ..was almost paralyzed..we had no health insurance.. no other income, third child at 23, fourth at 25, diagnosed at 34 with Arnold Chiari Malformation, Syringomyelia, Ehlers-Danlos Syndrome, Tethered Cord Syndrome & a long list of other dominoing health issues, All life changing..to say the least. Not to mention our mounting health costs.

Needless to say.... There wasnt anything that I trusted in this world. I had asked for many years... "WHY" ...... how much can one person take ....what is it that I did to deserve all of this ... will it ever change ..... I wanted to see things differently... I wanted and needed to Trust... and so does everyone else. It is a need that is designed to keep us searching for something to Trust. The problem is we trust in things that disappoint us over and over again. And soon our search..longing..need to Trust is just a small spark left in our hearts. That we forget about.... give up on.

I know this scenario all too well. Thankfully I met a women that rekindled that spark in my heart & I bought my first Bible at 30. I started watching a women minister on tv.. Joyce Meyer. It felt like she was talking to me every episode that I watched ( not to mention she is a "Huge Starbucks nut). We started going to church.. the first service we went to..the pastor mentioned Starbucks.. I knew I was in the right place. When I became sick on July 3rd of 2007, we stopped going to church, but I have never prayed so much in my life as I have in the last year. I realized a couple of months ago that I need to be in church, surrounded by other people that Believe. No matter how crappy I feel, I go to Church.

At a time in my life..when I thought I had been through everything.. I really felt as if I had no one. I do have a caring, loving, supportive husband who I have been with since I was 13, but having these health conditions that are all rare ; the search to find the right doctors to care for me, help me, "Believe Me" was and is a very difficult road to travel.

My last surgery was the most difficult and painful experience I have been through. At one point in ICU I had a reaction to a chemical used during the surgery.. I was on a morphine drip given every 6 minutes.. I was still in excruciating pain.. sleeping with ice packs on my head. I knew if I cried..it would hurt worse. I began to pray the Lords Prayer...

"Our Father in heaven
hallowed be your name,
your kingdom come,
your will be done,
on earth as it is in heaven.
Give us today our daily bread.
And forgive us our debts,
as we also have forgiven our debtors.
And lead us not into temptation,
but deliver us from the evil one."
In Jesus name, Amen

I repeated this prayer outloud...over and over again. It was night time..and my room mate was sleeping. But I felt someone stroking my head. I finally fell asleep.

Do you want to Trust? Have complete Trust without question? Faith that there is somewhere... where your belong? Someone who offers unconditional love? To rely on?

Whether you are already a believer or not... what are you doubting? Do you have anything to lose? Are you worried that you will be disappointed? Again? Possibly made fun of for believing in something that has no proof?

Do you get paid on Monday? Before you work? No. Do you get before you ask? No.

You have to believe to recieve.

Believing will change your life.

Put your hurts, disappointments, worries, obsticles, doubt, in Gods hands. You lose your peace when you are always trying to figure things out, fix it yourself, heal yourself, build your own bridges.

Let Jesus come into your heart to rekindle the tiny spark in your soul. So you can see the light to the Lord.

I promise you wont be disappointed. Im not.

Pray with me....

Lord come into my heart and heal my past wounds
Teach me the way to a Faith filled life. Forgive me for
Any past actions that were disrespectful to you.
Fill me with your Love. Renew my strength
Show me Peace. Guide me. Teach me how to grow in
Your word and become a better Christ like person.
In Jesus Name, Amen.

Welcome to a better Life from this day forward.

God Bless you
Dee

New Day

2008-11-19T22:16:00.005-05:00

Today I went to The Chiari Institute. I developed a lump on my head.. towards the top..where the rod ended. It is sore and mushy. I didnt have a fever and it wasnt red. I also have had a rough couple of weeks. I have experienced some major headaches. Also some very bad dizziness..but only with movement. I had dizziness before surgery, but I could be sitting still and have it. When I get dizzy..I also blackout. I have to hold on to something until it passes. I have had issues with

sleeping... worse than before. So of course..this increases the chronic fatigue.

It didnt help matters when I was unable to get one of my doctors at TCI to call me back. I was very frustrated..to say the least. I have never had this problem with tci before. I saw Dr Verma today. As you can see.. Im sporting my new hardware in my xrays from today.

Well Dr Verma informed me that everything is healing well. That the lump is just a reaction from the foreign object (rod). That it will get better.. hopefully. If it continues to be bothersome..we could try injections. He doesnt feel it will get to that. The dizzines, sleeping issues, headaches,ect... are all still from the chiari/kinked brainstem. Even though the surgery released the pressure off my brain.. he explained that it has been like that for a long time. It could take up to a year to see the final results. I knew all this going into it. The problem Im having with that..is I felt better for the first four weeks after surgery...then I do now. I have been on the couch for 2 weeks..with the heating pad...taking pain meds/muscle relaxers on a regimen again... my neck is stiffer than a board. I had more range of movement at 4 weeks postop..than I do now. Its like Im in reverse. Today is 7 weeks postop. I know Im being impatient. Its very hard to keep patient when going through something so life altering.

Iam going to physical therapy 2x a week and Im getting a massage from my chiropractor once a week. Which does seem to help. So Im back to the waiting game "AGAIN". Except this is it...I have done everything they have ask me to try. I have exhausted all options.

I'am going to have to make a concious decision and let go. I cant control this. There is nothing else for me to do. I have decided to put this in Gods hands. He is the only one that can change the outcome.

We started going to church again a few weeks ago. I love going to church. It makes me feel more connected to the Lord. I realize now that he wants me to let go. He cant do any works in my life if Im always holding on..trying to do it myself. So I have decided to do what I can around the house.. enjoy what ever Iam able to do..day by day... and use the time Iam couch bound wisely. I feel now that I have wasted too much of my life by always rushing around. I cant wait until the weekend...I cant wait until next summer... I cant wait for my kids to get out of school... I cant wait..I cant wait.... I now have to wait...slow down... When you slow down..you notice more details about your life. Im begining to think that the details are what is important in Life. We all have goals ..achievements .. mile stones... I think its the journey we have traveled to get there that is what matters. The "how"..not the "what".

So in the coming days, weeks, months.... Iam looking forward to see how God is going to guide me, encourage me, restore me, heal me, bless me and show me how wonderful it is to not be the driver... but a passenger along for the ride.

The Story continues.....

2008-11-13T17:22:00.004-05:00

As the world turns... It's been a wild ride. This is enough of a roller coaster for me. I was feeling great up until a couple of weeks ago. I started having headaches again..about 2 weeks ago. I also stared with dizziness again, but it is different now. I have it with just movement. Its gotten worse in the last few days. I have almost blacked out on more than a couple of occasions. I emailed Dr Bolognese a few days ago, but my computer was down for a couple of days, so I wasnt able to check my mail. I noticed a new symptom yesterday morning.. so I decided to call TCI..I left a message. I recieved a phone call back at 5pm from the nurse. I explained that I now have a lump on my head..where I used to be able to feel a screw. It is mushy and it hurts. She said she would consult with the doctor and get back to me. SO this morning before physical therapy..I took a picture and emailed it to TCI. Its been a long day.... hopefully my lump is gone in the morning...

Spoons

2008-10-21T08:45:00.003-04:00

As you can see..I added a link for the Spoon Theory.. I think it is a great tool to use when trying to explain to family and friends what it is like living with a chronic illness everyday. My daughter was sitting here this morning while I was checking my email..and noticed this new link. She wanted to know what it was..so I read her the story. After reading it to her she came up with a short poem about spoons...and I thought I would share it.

As long as you wear the spoon of the day
You will be okay for the rest of the day

By Tori Hall

Getting Better

2008-10-14T12:41:00.004-04:00

Im so excited.. I went to the store yesterday and bought all these new gadgets for my car so I can see all the blind spots without having to turn around. I drove today!!! Not far..but its a start.

We did go to Octoberfest on Sunday at Hunter Mountain.This is my husband,Bob, my youngest son, Mitchel, and me on the ski lift. This is my favorite festival of the year. I was determined to go.

Im feeling better everyday. But Im listening to my body, when it says it is tired, I rest. Iam sleeping through the night. Which makes a big difference. Im finally off the steroids. But Iam still on alot of meds. The muscle relaxers are what makes the biggest difference. I can go almost 6-7 hours without having to take the pain meds.

I want to say a BIG THANK YOU to all the prayers and kind words of support through all of this. It makes a world of difference for me. Im not close with my parents, and they both live on opposite ends of the country (Florida & California). I was raised by my grandparents and they both passed away when I was a teenager. So it has been my husband and I for the last 22 years of my life. Iam very blessed to have such a wonderful man as my husband.

Be Well

Dee

2008-10-10T20:39:00.003-04:00

Today I was able to get my stitches out.. I will actually be able to take a regular shower on Sunday!!!!!! This is my scar 10 days post op. My neck still feels very stiff and sore. I know patients is a virtue. Im so anxious to see what the end results will be.

My friend Lisa wants to see what the front of my head looks like.. so here it is.My oldest son Chris..says I look like one of the spice girls. Not really what I would like to resemble at 35. But it is out of my eyes and off my incision.

This has by far been the hardest surgery of them all. But with Gods timing..Im sure it will be the most worth it. You always have to pay the most for something that is worth the most.

I start pt in a couple weeks..and then after the holidays I will follow up at TCI and schedule a consult with yet another orthopedist for my shoulder. So Im hoping January will be the month to get that fixed.

I have been praying and thinking of a few friends that are going through their own set of battles. Please pray for their pain to be relieved ,their faith to stay strong, and to find renewed strength and courage for tomorrow.... Keesha, Lisa, Rose, Lacie, Laura, Laurie, Caroline, Nancy, Erika, Alison, Amy joe, April, including all those who suffer from chronic pain.

Be Well

Dee

IM HOME....

2008-10-07T23:34:00.004-04:00

Well I made it... it has been a rough week. But all in all..Iam on my road to recovery. This is my new do..thanks to Dr Remy at North Shore. I did ask for a little of the back and to please leave a flap of hair for a comb over. Not quit what I asked for, but Im not about to complain. I want to say THANK YOU to everyones kind words of support and prayers. They are always welcome. I had a Craniocervical Fusion from c5 to occiput. with a minnie posterior fossa decompresion. That is what I was told, so of course Iam anxious to read the surgical report. I met some new friends while I was in there, April from TX, she had TC surgery. Rose from our CT group was also in the day after me for PFD. My room mate, who is not a chiarian, Sally, was such a wonderful women. I already miss our talks we had before bed. April, Sally and I had a great time the last few days of my stay. I believe I have made more life long friends.Its always nice to have a big refreshing glass of leamonade after being handed a pile of sour lemons....

I'm praying today is the day.

2008-10-07T08:29:00.002-04:00

Well my mom was sposed to come home Monday but had a rough night Sunday.I hope she gets to come home because it's been a week today since her surgery.I guess its better for her to be there just incase something is wrong.But we'll know today and hopefully shes replying to everyone by tonight or tomarrow morning.

First off...

2008-10-03T11:36:00.003-04:00

Thanks for the few that left comments,I can read them but I dont know much about this whole blogger thing so sorry for not replying.I talked to my mom a minute ago shes in pain but feeling good if that makes sense...They're moving her into a regular room and they took one IV out and removed her drain.I havent got to see her yet but my dads been back and forth as much as he can.He said that she looks good,but she always does cause shes beautiful and shes my mom:].Thanks to everyone praying for her and saying hi it really does mean alot to me,and im not one to share my feelings.I'll try to get on tomarrow to let everyone know more information.

Well...

2008-10-02T09:15:00.002-04:00

This is Chris,her son.I've never been on here but ill try my best with what and how her surgery went.She went in on Tuesday the surgery was about 5 or 6 hours long.At first she didnt need the decompression** but they realized when they were in they needed to do it.She also had the rods put in which went from the back of her skull down her spine which I believe was screwed into C4,C5,and C6.My dad is going down today(Thursday) to see how she is doing cause she hasnt really been able to talk on the phone but like 10 minutes with us.So i'll try my best to keep everyone posted on here and she should be back home this weekend if all goes well.

Many Thanks

2008-09-29T22:02:00.003-04:00

Many Thanks to all the wonderful emails...with prayers and support! I got home late tonight from Long Island. Iam wiped out. Its been a very long day. Dr Verma is very nice. He explained everything in great detail. Which is exactly what I needed.

I was able to meet with someone at TCI today..Leigh...that I met online. We talked most of the day. Its always nice to meet new people to share your story with..and offer a listening ear. Its always a tough day to get through on your first visit.

I went to CT yesterday..to meet with the Chiari of CT Support and Awareness group. A couple of other NY chiari friends went with me. My wonderful husband was our chauffeur. It was nice to see everyone before my surgery.

My oldest son..Chris..will be posting here for me. To keep everyone updated.

Thank you again..for all the prayers, good vibes and kind words of support....it makes me feel all warm and fuzzy inside...knowing I have so many cheerleaders rooting for me!

Tuesday is closing in....

2008-09-28T23:57:00.002-04:00

Well...its getting closer. I went to CT today to meet with the Chiari of CT group. Two of my friends in NY car pooled with me to the meeting. Lacie from Albany and Nancy from Port Jervis. It turned out to be a nice day..considering the rain. I enjoyed meeting some new people at the meeting..and also seeing my friend Lisa from CT. She has evolved into my Chiari Sister..we talk almost daily.
I cant believe tomorrow is the 29th! I have to be in LI at 8am for 2 CT's, then preop registration and testing at 10am. I have an appointment with Dr Verma at TCI in the afternoon. My son, Chris and his girlfriend, Sam.. are going with me. We are meeting a couple of people for lunch. They are visiting from Indiana. Both are here for their first consult at The Chiari Institute. So the questions about TCI's proceedures are endless. I dont mind..thats what Iam here for. If I can ease someones mind by answering a few questions, then so be it. That is when I feel like there is a reason for having all these of the wall disorders.
Well Im going to try and get some sleep... I have an early morning. I want to say Thank you to everyone for all your prayers, support, concern and comforting words of kindness. It means a great deal to me.

Conquer Chiari Walk Across America Albany Ny

2008-09-23T17:17:00.004-04:00

My husband, children, Sam (my son's girlfriend), Nancy (a woman I met locally that has CM) and myself attended the walk in Albany NY. It was awesome to see so many people together that know what Chiari is! We had over 200 people walk and $6000 raised. (not including online donations and sponsors!!!! Im amazed at how much money was raised. I would love to find out how much was raised from all the walks.

I was also able to meet someone I had been talking to online for quit some time. She is a sweetheart! She is going to ride with us to the chiari meeting in CT this Sunday.

Cant wait for next year!

2008-09-14T23:09:00.004-04:00

I have been debating wether or not Im going to attend the Chiari Walk this Saturday in Albany NY. I only have a couple of weeks before surgery..with lots of items on my to do list. This is also very important to me. This walk represents everything that I support. So I have decided that Iam going to make arrangements to attend the walk. Im hoping that my husband and children can also go with me. Wish me luck...

Count Down....9/30

2008-09-12T19:28:00.002-04:00

Tick Tock..Tick Tock... it seems as if time is flying. I have so much to process. My brain is going a mile a minute. Iam scheduled for CCF! Iam scheduled for CCF! I have a boat load of tests and appointments the day before surgery. I have talked to staff at TCI..including the NS. Iam getting cold feet. My husband doesnt think I should have the surgery yet. He wants me to wait until it gets worse. I dont know what to do........ The nl at TCI told me that normally this is an elective surgery, but in my case it is affecting automatic functions, so I need to have it.
Iam so confused..................Iam stressed out to the max........Iam feeling guilty for being sick...for putting my family in debt.......for being a burden.......for not being able to do all the fun things we used to do..........for not being able to clean the house and cook 6 days a week......for not being able to work.........for having to cancel social gatherings at the last minute because I dont feel good........
GUILT
Its like..its out of my control. I just feel guilty. I know I shouldnt..but I do. My husband said it is completely up to me..but how can I feel at ease with myself knowing that Iam putting my family through all of this and they dont want me to have it done! Can anyone say "Resentment".... its a nasty word..that doesnt have to show its face to reek havoc in a family. He's worried I will be worse after surgery..I may be worse before surgery and they might not be able to correct it! I understand his point..but he doesnt walk in my shoes. Forget the physical aspect of all this for a minute...emotionally...Iam done...burnt...fried...caput. I think emotions went awol a long time ago...

Iam going to pray for peace...guidance..courage..renewed grace and mercy.
I need God to show me the way...Iam blind to the path I should be on...

May the Lord light my way..with words of wisdom and a new day.....

Scheduled the CCF..

2008-08-26T16:14:00.002-04:00

Well..I just recieved a phone call from TCI..Iam scheduled for Cranial Cervical Fusion w/Duraplasty September 30th. I have one month to get all my ducks in a row....

DISGUSTED!!!!!

2008-08-19T19:05:00.002-04:00

Can anyone relate to this massive..gigantic...immeasurable... feeling of frustration and disgust............................

I called TCI today to find out when they are scheduling surgery and if they had put in for my mri approvals. Only to find out that she is not sure when they are scheduling surgery...my appointment was made for 3 mri's and an xray 8/28 at 8am...and get this!!! Im supposed to see the neurologist next Thursday at TCI..not the neurosurgeon!!! I dont need a diagnoses!!!! I already know what is broken. I was supposed to be scheduled with a neurosurgeon. Like I want to travel over 2 hours away to meet with someone new..to tell me what I already know??? My medical secretary said she would have to call me back..because Dr Bolognese is booked until DECEMBER!!!!

I think optimism has packed his bags and left the country!!! Pessimistic is movin in!!! Its a good thing Im going to my Psychiatrist tomorrow. I think we need to up my dosage!

Maybe Im over reacting a tad..but this is starting to turn into a series instead of a bad dream. Its bad enough I was told I would have to wait 12 weeks..now I may have to wait 4 months!!! I dont know how Im going to do it.....

Click My Heels Together...

2008-08-15T14:26:00.003-04:00

Well this summer hasn't been much better for me. Im still experiencing symptoms. The numbness/tingling has gotten better...but that is about it. We have had crazy weather this month...its taking its toll on me.

I was able to go to CT and meet with some great women who are Chiarians. That was great.I have found some people that live close to me. I met with one woman a couple of weeks ago..Erika..she is a sweetheart. It makes things so much easier..to know your not alone. And to be able to talk to someone..that knows exactly how you feel. Im hoping to get together with the local women next week.

Well..I go back to TCI in 2 weeks. Im so anxious..I cant stand it. I need to know what is going to take place and when. They have scheduled me for 3 mri's (brain,cervical,lumbar) and a cervical xray.

I did go back to the orthopedist for my shoulder. But I went to his partner..Dr Rashenbach. He was very informative. I really liked him. But he ordered more PT. What exactly thats supposed to do..Im not really sure. I cant do any upper body exercise now! But my physical therapist added isometrics for my shoulder. I go back next month. But he did tell me that if I have to have surgery..Iam not a candidate for asthroscopic surgery. I would have to have reconstuctive. Just ducky!

So now I need to know which one will be first.

About three weeks ago..I found a lump by my right ear. It is small but painful. I saw my pcp ....he ordered bloodwork and put me on antibiotics. I followed up with my ent the next week. He said if was still there in 2 weeks..come back and see him.Its been 2 weeks. I now have a lump under my left shoulder...and it hurts. Im going to my pcp this afternoon.

Iam so disgusted.... it seems like it never ends.

On top of it..my oldest son,Chris, has another hernia. He is going to need surgery. This is the second one in 3 years.

On a brighter note.. I did talk to the case worker who is handling my SSD case. She informed me that they sent their decision into the federal office...and it was approved!!!! Although she informed me that the Federal office has to agree. So Iam praying that it sticks. She said I should get something in the mail in the next week or so.

This would be so helpful. I can then move on to round 2...Federal Workmans Comp. A much bigger battle. I have bills pilling up..and more to come.

I have been following blogs and forums..but really havent been active. Its just so depressing. I know that its helpful for other people..but I dont want to bring them down. Im usually a very optimistic person. Lately all I can do is pray for renewed mercy and grace..strength..courage.. and patience....

2 Surgeries later and more Physical Therapy...

2008-07-08T09:46:00.003-04:00

It seems like it's been forever since Ive posted... Not alot happening... Im still experiencing symptoms... I don't have as much numbness in my arms.. I still have all the classic symptoms for Chiari... pressure, headaches, dizziness, blurry vision, ect. Iam also still having severe neck/ shoulder pain. All the usual aches and pains.

I started physical therapy a couple of weeks ago. The therapist that I found is great. We are still trying to find some exercises that don't aggravate my neck. The smallest movements can set everything off. I enjoy the massage more than anything.

I did recently find out that one of my doctors at TCI ( The Chiari Institute) is leaving.. Dr Roonprapunt. He said he lives in Manhatten and the commute is affecting his family life. Needless to say.. Iam sad to see him go. He wont be their when I go for my followup in August.

I have an appointment August 28th at TCI for my postop check. I will have some xrays done to check the fusion in my neck and see if my symptoms have changed. If my symptoms are the same and the fusion has healed..then I will have the CCF (Craniocervical Fusion) with duraplasty done.. If my symptoms have improved... then all is well.

I still feel that Iam going to need the CCF to help releive the symptoms. But at the same time.. Iam a little nervous about going through all this and not seeing improvement. The surgeries that Ive already had done..went well. I feel like Iam pushing my luck with having more done.

My right shoulder is still bohering me.. Ive now had 2 cortisone shots and they aren't helping. My pain management doctor and my physical therapist have both informed me that Im going to have to go through with surgery to correct the laberal tear in my shoulder. GGGHHHhhhhhrr!

Iam still having difficulty sleeping..so once again..my sleeping perscription was changed. My pain management doctor also changed my pain medication to Dilaudid. So hopefully the new meds will help get through the next few weeks until I go back to TCI for my follow up.

Iam enjoying the nice weather..when it's not raining... I was finally allowed to get into the pool and hot tub. I haven't been very active on ASAP (American Syringomyelia Alliance Project)... I read alot of posts but haven't really been involved. Im kind of bummed about all this.. I wanted to get everything over with and work on getting better. I didn't want to be having surgery in the fall on top of the holidays. At this point I don't think I have control over that...

2 Week follow up at TCI

2008-06-20T14:55:00.005-04:00

I went yesterday for a wound check at The Chiari Institute... I was supposed to see the nurse practitioner.... But I was there so long that Dr Roonprapunt showed up at the office. He said he would see me. I was relieved to be able to meet with him. I had some questions and concerns. The incisions look great... healing very nicely. Im having alot of neck/shoulder/upper back pain. It covers my entire upper body. It started 3 days after surgery and has progressively gotten worse. I also still have numbness in both arms. Dr Roonprapunt told me that Iam still only 2 weeks postop.. to give it more time. I start physical therapy next week..for my neck and lower back. He explained that when they ( the neurosurgeons at TCI) evaluated my case with the new tests I had done... they were hoping that having the ACDF (Anterior Cervical Discectomy Fusion) would be enough to alleviate my symptoms...even though the ICT (Invasive Cervical Traction) I had done showed positive results. Either way... I had to have this done...even if I have to have the CCF (Cranial Cervical Fusion) done in the future. I go back to TCI the end of August... and I will have some new pictures taken...xrays ect... If Iam still having symptoms and the bone has fused... we will move forward with the CCF. Iam still having dizziness and blurry vision... along with pressure in my head and a couple major headaches since my Tethered Cord surgery. I told Dr Roonprapunt that I feel that Iam going to have to have the CCF.

I also saw my orthopedist for my right shoulder this week. I had a cordisone shot the week before my tethered cord surgery. It didn't do anything. So this week my dr informed me that Iam not a straight forward case and that the pain could be coming from somewhere else. I was a bit annoyed by this response. Like I had no idea!! So he decides that the pain could be coming from the little joint that connects the collar bone to the shoulder...so this is where I got my next cordisone shot. I asked him what about the MRI results?? He told my that it wasn't bad enough to cause this kind of pain. Like I haven't heard that before!!

Anyway... it's the waiting game..once again...

ACDF.... the aftermath...

2008-06-07T20:55:00.003-04:00

Well...Im 2 days postop and Im home... I feel pretty good overall....my neck,back and shoulder are sore...and my throat hurts...but the incision feels good...I can move my head from side to side and up and down... better than I thought I was going to be able to move it...

Dr Roonprapunt..my NS... wants me to do PT for 3 months..( for the TC surgery and ACDF)...and then come back for an evaluation... he doesn't even want me to do anything with my shoulder until after the 3 months is up.... Im hoping that the new ani inflammatory that my primary is giving me...will work...

Im not sure if Cranial Cervical Fusion is going to be in the future for me...I will just have to wait and see...

As far as the anterior cervical discectomy fusion goes...my arm still hurts and Ive still had numbness.... only time will tell...

Round 2...Anterior Cervical Discectomy Fusion

2008-06-04T22:13:00.002-04:00

Ding Ding...Im off to the hospital tomorrow at 3:30am...I have about a 2 hour ride to North Shore Hospital in Long Island..
I went today for preop registration, 3 new mri's (cervical, Lumbar and brain), and to have my postop/preop checkup with Dr Roonprapunt at TCI..needless to say it has been a very long day.... I will be having ACDF from C4-C6..they will be removing the 2 discs between these vertebrae and then replacing them with a Plug that is made from cadaver bone..the 3 vertebrae (C4,C5,C6) are then fused together with a metal plate and screws..to hold everything in place while the Plugs fuse with my bone...
The incision is made on the right side of the esophagus vertically. ..the surgery will take about 4 1/2 hours... I wont have to be flat on my back for 24 hours either..because they dont enter the dura( the casing in which your spinal cord and cerebral spinal fluid are contained)...so I was happy to hear that..he said I will be allowed to get up as soon as I feel like it..
I found out that I will only be in the hospital for 2-3days(maybe 4)... I will be really happy if I get to come home on Sunday...
I will more than likely have a soft collar to wear only as needed...not the aspen (which I already have, but hurts my shoulder muscle, very restrictive)...

I have to go back in 2 weeks to have the incision checked and be examined... Dr Roonprapunt wants to wait 3 months for everything to heal...before we make any decisions for any further surgeries...

So we shall see...

2008-05-29T09:23:00.002-04:00

This is the incision 2 weeks postop....from Tethered Cord Surgery.... it is on my lower back...it was the day after I had the stitches removed. Iam now 3 weeks postop.. my back feels pretty good. It is still in a constant spasm.. but I can move around alot better.

I recieved a phone call yesterday from the medical secretary at The Chiari Institute. She called to inform me that the neurosurgeons (Dr Bolognese, Dr Roonprapunt, and Dr Milhorat) reviewed the EMG (Electromyography) that I had done a week after my surgery... and the cervical mri that I had done at my preop appointment. I hadn't had a cervical mri since July 2007. The doctors decided that I need to have a Anterior Cervical Diskectomy Fusion for 2 herniated discs in my neck.. C5-C7... this is where the neurosurgeon makes an incision in the front of my neck.. either removes the herniated disk or parts of it.. and then fuses the vertibrae together with hardware.

I will then have to go back for the Cranial Cervical Fusion with decompression at a later date. I ask the nurse when I will be brought back..she informed me that it will be up to the doctors... I will have to discuss the details with Dr Roonprapunt at my preop appointment next Wednesday.

So Iam pretty bummed out over all this...ANOTHER surgery!!! GGGGGHHHHhhhhhrrrr...

To top all this off..my shoulder has been killing me....Ive been doing more...moving around better.. so my shoulder is acting up again... my primary doctor told me last week that we would try a new anti inflammatory after the next surgery. Who knows when thats going to be!! I haven't taken it since April..I had to stop taking it because of the surgery. Im going to have to go ahead with surgery on my shoulder later this year..

Well Im hoping to have some good news to write about in the near future...

I Made It..round 1

2008-05-14T12:50:00.003-04:00

Well I survived tethered cord surgery...Im now 6 days postop..feeling pretty good.. I had Invasive Cervical Traction (ICT) done on May 7 and Sectioning of the Terminale Filum (STF) the next morning.

I was very nervous about the ICT. You are brought into the operating room and all of your personal information is verified. The procedure is discussed in detail. You are sedated just long enough to be put into traction. When you wake up, they have you sitting up with a halo device attached to your head by 2 pins that are secured above your ears. I just felt presssure, no pain from the pins. At that point the doctors start to add weight to see how you respond. It took almost 60 lbs for me to feel almost symptom free. Xrays are taken with every weight increase. Then everything is removed and you are sent to recovery. Its amazing how your neck looks on the xray after the weight is added. So I test confirmed Dr Roonprapunts diagnose of cranial instability. I also had 1 staple from where one of the pins were used, it wouldn't stop bleeding.

I was sore from the ICT and had an instant headache, but overall I felt pretty good.

I went in the next morning for STF surgery at 7:30am. I woke up in recovery, feeling really groggy. My husband was allowed to come in a little while later. I was moved into my room about 3:30. I had some double vision at first and my mouth was numb. But I actually felt pretty good. I rested off and on for the next 24 hours...I was able to drink when laying on my side.. by noon the next day I was starting to sit up. I was up and walking by 3 in the afternoon. Moving around actually felt good. I had a headache on Saturday and into Sunday, but not too bad. Sunday I started experiencing dizziness, so I was put back on antivert. I had taken this in the past for dizziness. I was discharged from the hospital on monday.
While I was waiting for my husband to get to the hospital, a friend I had met at The Chiari Institute in October, came in to visit me. She had tethered cord surgery on Tuesday May 13th. She was there for preop. I was so happy to see her. Her surgery went well and she is now recovering.
I feel better everyday.. I have an appointment tomorrow for the dexa scan and Saturday for the emg..Dr Roonprapunt said he will call as soon as he gets the results..So for now..it's one day at a time...

Surgery Date is Closing in

2008-04-26T10:54:00.003-04:00

The count down is closing in...I spoke to Dr Roonprapunt this week...Im having tethered Cord surgery on May 8th...and then Cranial Cervical Fusion on June 2nd...he told me that I need the CCF to relieve my symptoms....but my neurodynamics test came back positive for a neurogenic bladder...due to the tethered cord syndrome...so it is up to me to decide which surgery I wanted done first...I was glad to hear that Dr Bolognese is the other neurosurgeon that will be in the operating room with me...
My primary Dr called with the results of my mri on my shoulder...I have torn cartilage, a torn tendon and torn muscle...and it shows inflamation... so Im probably going to need surgery on my shoulder...I have an appointment Monday morning with the orthopedist....ghhhhhrrrrrrrrr
I went and got my hair chopped off the other day...it looks cute...I figure it will be easier to take care of...Ive been pretty lazy with it anyway..I always had it in a ponytail...my shoulder hurt too bad to dry it...not to mention it is still falling out...
I went to the Social Security Disability dr last week...it was not a fun experience...thier not there to treat you..so its a completely different environment...so now it's the waiting game...
So much has changed in the last year...its hard to digest...the realization of how much my life has become consumed by all of this... becomes clearer everyday...my attitude..goals...ideals... outlook on everything....my family has been affected... as anyone with life long health issues would relate to...
Im so worried that my children wont want to have kids of their own because of the possibilities..
I had to make a conscious effort not to think that far ahead...
God only gives us enough strength to deal with one day at a time...and thats what Im going to do...

More Tests

2008-04-12T16:24:00.002-04:00

Long day....we went to Baltimore on Friday to see my genetist..Dr Francomano.. for Ehlers-Danlos syndrome.. all four of my children have it... so each of them have to have an echocardiogram..my oldest son..Chris..has to have a bone density scan..(he has had many broken bones)..and two of my children (Nick and Tori) have flat feet... so they have to see a podiatrist... Dr Francomano is concerned about Tori..she wants her evaluated by The Chiari Institute..she feels its possible she has Chiari and cranial settling... she is going to forward a letter to TCI..so Im going to try and schedule her appointment with my follow up after surgery..
I finally was able to get in for the mri on my right shoulder...it's still bothering me...so hopefully I get the results on monday..my bloodwork for the liver testing came back normal..
I met my new urologist on thursday..my old one retired..Im having a urodynamics test done on tuesday...
I also have an appointment with the Social Security Disability doctor on wednesday this week..
Its going to be a busy week...I have bad headache today..it's the countdown to surgery.. I have so many things to get done..Im waiting until tuesday to find out which surgery Im having..and then Im contacting my insurance company about skilled nursing...I dont have any family around here...my sister and aunt are both dealing with thier own health issues... and my husband is self employed..so we cant afford to have him home everyday with me after surgery..
Its been hard for me to even believe how much this has consumed my life...Im determined to get some normalcy back in my life....what ever it may entail...
My husband has been so supportive...I dont know what I would do without him...Im very blessed to have him in my life...my children have been very helpful...Im very lucky to have a family that loves me so much...

Surgery Scheduled..5/7

2008-04-04T21:59:00.002-04:00

Well I went to TCI on thursday...Im so happy...we are moving forward with surgery..May 7 Im having Invasive Cervical Traction and the next day Im having surgery..either Cranial Cervical Fusion (with decompression) or SFT ( detethering)..Im having a urodynamic testing next week..to see if I have neurological defects in my bladder function from the tethered cord.. Ive lost the sensation of having to pee..so if I fail the urodynamic test..I will have the detethering first and then the CCF a month later...Dr Roonprapunt is my neurosurgeon at TCI..he is such a nice doctor...very thorough...I spoke to Dr Francomano thursday morning..she wants to follow up on my enlarged inferior vena cava artery..so I went in today to have bloodwork drawn for liver function testing..(to test for Budd-Chiari)...she said she also wants to do further testing to check for other possible enlargements in my venous system..My sleep study is rescheduled for monday April 7...and Im still waiting to get my mri on my shoulder..Ive been feeling dizzy everyday..Dr Roonprapunt wrote me another perscription for the dizziness..so I'll see how it works tomorrow..

April 3rd...TCI appointment

2008-04-03T07:47:00.002-04:00

Well it's finally here..my appointment with the neurosurgeon...Dr Roonprapunt...I will find out today..when we can take the next step...Invasive Cervical Traction...I will also find out if we are only doing the fusion surgery at this point... Im a little worried about being cleared for surgery...my cardiologist called yesterday...finally...and the MRA showed that my entire inferior vena cava is enlarged...twice the size that it should be...but he is telling me that it may just be my anatomy... but in his report he states that it may be caused by Budd-Chiari... a rare disorder of the venous liver system...which by the way can be caused by a connective tissue disease....that I just so happen to have...Well Hello...dont cha think we should do some testing to check??? he says that because my leggs aren't swollen..that he doesn't think I have it....THINK????....Ive about had it with doctors....I have to go for an mri of my shoulder now...Im having alot of pain in my right shoulder...my pcp thinks I may have bursitis...that will go well with the costochondritus...and the dr told me that my right knee is swollen..but my orthopedic said that my knee cap is just flexable and irritating the knee...its just the Ehlers-Danlos syndrome...JUST....and to top off my week..I went for my sleep study..April 1st... all packed, husband drove me, daughter crying as I left...I get there and they tell my that they dont take Oxford insurance..that my appointment was canceled last week...well then why did you CALL oxford and get the approval??? what a week...so I had to call my insurance to find someplace to have it done...TCI wants a copy of the report...on the bright side of all this...Its Sunny outside....

Spring is almost here...

2008-03-29T09:08:00.003-04:00

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..

Today's View

2008-03-18T21:26:00.002-04:00

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...

2008-03-08T10:14:00.006-05:00

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

New Diagnoses

2008-03-07T18:10:00.006-05:00

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...

Todays view

2008-03-04T20:22:00.003-05:00

Transparent
Branches seen
Leaves falling
Like tea leaves green

Pictures of past
Present
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
Courage
Patience
And Peace

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

2008-02-19T20:15:00.004-05:00

I haven't been on in a while..haven't been feeling that great. I know that a few of you have emailed me..Im sorry I havent responded and want to say Thank You for your support. Ive been kind of distant lately. Not really myself. I had another echocardiogram done today..Im waiting for the doctor to call with the results. Ive come to the determination that surgery may be inevitable. I believe that these episodes ( heart palpitations) have to do with CM and the cranial instability. I found a case study that says TCI found that only 22% of their patients had this as a symptom and out of the 22% majority of them had cranial instability. I recieved a phone call from TCI today. They informed me that my daughter doesnt have Chiari or TCS. Great news!!! I scheduled a follow up for myself..April 3rd..Im going to see if they feel all these new symptoms have to do with the cranial instability. If thats what it is..Im going to start the process for surgery. I know that I would have to have invasive cervical traction. Thats where they put you in traction and add weights until you feel relief from your symptoms. Then they take measurements to use for surgery. Ive also found a lawyer in PA for federal workman compensation. I figure I will hear something in the next month or so about SSDI. Feeling very depressed lately...it just feels like I cant win..I had a headache last week that was so bad...I couldnt even cry..you know if you cry..its just going to be worse...Ive been reading everyone's updates on thier blogs and checking ASAP...I just dont have the energy or mental focus to do much posting...I do want to let everyone know that you are in my thougts and prayers... hope everyone has a is well...

Wednesday 2/6...

2008-02-10T20:56:00.000-05:00

Well my motto on wednesday didn't go so good...I went to my neurologist for my regular check up..explaining to him that I had went to my primary physician for chest pains a couple of weeks ago and he diagnosed me costodronitis..but I told him I was still having pains (in addition to shortness of breath and dizziness)and I had just finished my perscription of prednisone..well..my NL went into orbit because my pcp didn't do any tests..and he wanted me to go to the er..I didn't want to go..so he called my cardiologist while I was in the office..and sent me straight there..the cardiologist did an ekg and checked me out..everything was normal..and he wanted to know why the mra's that my genetic dr had ordered..hadn't been done yet.. I explained what had happened ( look at the blog below..about Dr Francomano's staff).. he wanted me to go to the er..I didnt want to go.. so he wanted an angio catscan done asap..and bloodwork to check my kidney function before the catscan..so I was at the hospital early the next morning for bloodwork..and had the catscan done at 10:30..all came back fine..so he ordered an echocardiogram and a stress echo to be done..( in the next couple of weeks).. and follow up with my regular cardiologist..Im still having these episodes..a couple a day..but I just try to breath through them and relax..Im doing some research on a link between Chiari, Syringomyelia or Ehlers-Danlos and heart palpitations..I have a feeling that this is whats happening...just one more reason in favor of surgery....

Today

2008-02-06T09:16:00.000-05:00

Today the weather outside is dreary and nasty..but today my motto is "There is more to life than just here and now"..I read this in a book this week..it puts things in a different perspective..right now I dont feel that great...but there is more to life than just how I feel right now.. as some people say "Iam sick and tired of being sick and tired"..So Im choosing (for right now anyway) to not be sick and tired..

Ehlers-Danlos results

2008-02-01T07:59:00.000-05:00

Well its only 8am..I just recieved a phone call from Dr Francomano's office.. I do not have the vascular type of eds....WHEW....she said we will go over everything when I come in with my kids.. (April 11th)...she had said at my last appt..that if it came back negative we would probably go with classic/hypermobility..mostly classic due due the valvular regurgitation...Im wondering if she's going to want to do the skin graft..not to keen on having that done...ehw..anyway..at least it was good news before the weekend...

Is today MONDAY...

2008-01-31T14:12:00.001-05:00

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

2008-01-29T20:10:00.000-05:00

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

Costochondritis??

2008-01-27T11:16:00.000-05:00

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..

Tomorrow

2008-01-24T22:34:00.000-05:00

Pain..
Inside
Surfaced
Retreat
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

Todays News

2008-01-23T17:24:00.000-05:00

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...

Tori's report

2008-01-19T17:02:00.000-05:00

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..

Tori's MRI

2008-01-18T07:34:00.000-05:00

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...

And the saga continues...

2008-01-17T11:32:00.000-05:00

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???

Can Anyone Say FRUSTRATED..

2008-01-15T18:41:00.000-05:00

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!!!

Faith

2008-01-14T18:22:00.000-05:00

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..

New Challenge

2008-01-12T11:00:00.000-05:00

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!

Repair

2008-01-08T11:51:00.000-05:00

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..

View

2008-01-06T20:24:00.000-05:00

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..