Mystery Diagnosis Chiari episode

The Discovery Channel Mystery Diagnosis episode featuring Chiari. Dr B was my surgeon for my tethered cord release.

http://www.chiaritvspecial.com/chiarivideo.html

I had never seen it. It was pretty good and shows how hard the patients have to push to get diagnosed. In this case, it was the mother. She watched her daughter wilting away before finding The Chiari Institute.

The day in the life of a Chiarian

First off, I do not want anyone to feel sorry for me. That is the last thing I want. However, I want awareness...True awareness of what we go through on a day to day basis. Usually when people ask me how I am doing, I give that faint smile and say "fine" since they really don't want to know how I really feel. So here is some of what may go on in the my day as a Chiarian:

I wake up with my family almost every morning at 6:30am. Some mornings I can not physically get out of bed but most, I force myself. I do this to have some sort of normalcy. My body is already a 7/10 on a pain scale. As I move, it gets a little better. The pain is in my neck, major joints, headache, nausea, feet, and hands. I find great pride in making coffee for my husband and lunch for my 8 year old. Hey, it may be the only thing I get done all day. I get to see my husband off to work, make sure Weston brushes his teeth makes his bed and the usual morning routine. This school year, I actually get to drive him to school in the mornings. Another thing I do every morning is make my bed. For some reason, it feels normal.

Wow, that is a lot of energy used or spoons as the chronically ill call it (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/). I usually lay back down in bed or on the couch for an hour or so. Showering daily is a thing from the past. It is not physically possible. Then I prepare for whatever event I have scheduled for the day. By event I mean, what kind of doctors appointment do I have for today? Could it be my rheumatologist, endocrinologist, neurologist, primary care provider, internist, general surgeon, neuro surgeon, occupational therapist, physical therapist, cognitive therapist, visual therapist, or just the plain ol therapist to deal with all of this?

At first they had me going to so many damn doctors it was like a full time job. I had to say, "STOP! I am tired. And, this is getting expensive." Even at $20-30 co-pays, it was adding up to hundreds of dollars a week. Now, after seven months of therapies, I am down to Occupational therapy for fine motor skills of the hands. When I go out of the house, it is a major event. By the time I get home, I must lay down again. I do take medications, on a daily basis, to help prevent migraines. However, the pain from everything else is still there. I do not take anything else if I have to drive. So, I push through, just like most others with Chiari. It does not mean my pain level is any lower.

On days that I can not get out of bed, I sometimes am unable to lift my head. Other times, I am physically unable to walk. My brain tells my feet to move, and they do not move. It is a VERY scary thing. And other times, I just don't have the energy to move. As a nurse, I heard people complain of "chronic fatigue" and I often wondered if it was a real thing. Guess what? IT IS A REAL THING! And, I had asked my doctors for years about it but never pushed it. I thought they would just think I was "crazy". When I did talk to them they would say things like, "You are a busy working mother" or "You are going to school". But I could never get enough sleep!

When dinner time comes around, I quickly try to throw something together. By this time I am on sensory overload, my head is pounding and my pain is starting to increase. My tremors begin to also escalate. It is difficult for me to stay in the same room as my family due to lights, sounds, and other visual stimuli. So, I usually end up in my room for most of the evening. I hate taking any pain medications due to the way it makes me feel and don't usually do so until bed time. by then I am usually 9-10/10 on a pain scale and extremely nauseated. Many nights I cry myself to sleep. No one wants to live like this. It is so isolating, even from your own family.

Another thing that I have had to endure is cognitive function deficits. I used to calculate medications in the middle of the night. Now I struggle with helping my 3rd grader with his math homework.

These things are REAL and happening to hundreds of thousands of people right hear in the US (And, possibly millions around the world). It is sad that many doctors know nothing about it and some are not willing to learn. It is my goal to educate as many as possible. Many of my friends are in the healthcare field and have listened. For that I am VERY grateful. I get messages and calls from time to time stating this. I also get phone calls and emails from newly diagnosed patients that do not know where to turn or where to go. This give me hope and some purpose. I know that due to my sister and my work that at least 5 people have been diagnosed. That is something to be proud of!

Please join the fight by walking on September 17th. Find a walk near you at ConquerChiari.org or sponser me at
https://www.conquerchiari.org/ccwaa11/kellicarter

Woo Hoo--Helmet of Hope/ Conquer Chiari

Below I have copied and pasted some really good news for Chiarians. We will be getting some national coverage on September 10th. Jimmy Johnson will be wearing the Conquer Chiari logo on his helmet and has awarded a $10k grant. Yeah, that much closer to finding a cure!!!!


http://www.jimmiejohnsonfoundation.org/News/News-Archives/Two-New-Charities-Added-to-Helmet-of-Hope.aspx

Two New Charities Added to Jimmie's Helmet of Hope
7/01/2011
CONCORD, N.C. (July 1, 2011) – The Family Crisis Resource Center of Cumberland, Md. and Conquer Chiari are the most recent charities added to the 2011 Helmet of Hope, which Johnson will wear in the NASCAR Sprint Cup Series event at Richmond International Raceway in September.

Each organization will also receive a grant of $10,000.

Steve Richards of Performance Racing Network nominated The Family Crisis Resource Center of Cumberland, Md., the only program in Allegany County, Md. that provides comprehensive services to victims of domestic violence and sex crimes.

“The Family Crisis Resource Center in my hometown of Cumberland, Md. provides a safe haven for women and children of domestic violence. They can stay there, receive counseling, support to get through the legal system, and then are set up in an apartment/house when they're ready to leave the Center. My Mom has volunteered in various capacities with the group which has helped countless families in the Western Maryland area since 1978,” explained Richards on his nomination form.

Julie Carter of Billings, Mont. nominated Conquer Chiari, which is dedicated to improving the experiences and outcomes of Chiari and Syringomyelia patients through accurate information, raising awareness & sponsoring research.

“There are thousands and thousands of Chiari patients all over America,” explained Carter. “Most people have still not even heard of Chiari and have no idea what it is. It is a terrible, excruciatingly painful brain defect that is taking our lives and destroying them. I myself have Chiari along with all three of my daughters. We have had multiple surgeries and unfortunately have more to look forward to.”

“Conquer Chiari has been doing a fantastic job of representing us, educating us and gathering research and researchers together to try to help us,” added Carter.

In its fourth year, the Helmet of Hope program gives fans and media members across the country the opportunity to nominate their charity of choice to be featured on Johnson’s helmet for a select race. Each charity also receives a grant of $10,000. To date, the program has contributed close to $200,000 to 37 different charities.

Johnson will draw one winner from a list of media submissions and one from a list of fan submissions each race weekend through the New Hampshire event in July. The Family Crisis Resource Center of Cumberland, Md. and Conquer Chiari joins 24 Hours of Booty, the Flagler County Education Foundation, Lollipop Theater Network, the Tennessee Chapter of the ALS Association, the Ronald McDonald House of Charlotte and Els for Autism as charities that will be featured on the Helmet of Hope. The American Red Cross, which was placed on the helmet to kick off the event in response to recent tragedies across the nation, and Lowe’s Toolbox for Education, which the Jimmie Johnson Foundation partners with to fund Champions Grants, which are awarded to K-12 public schools in the hometowns where the Johnsons grew up and currently live, will also be featured.

Fans and media members may nominate their charity by visiting www.helmetofhope.org.

For more information about the most recently selected charities, visit www.familycrc.org and www.conquerchiari.org.

AN ENTIRE YEAR HAS PASSED

A whole year has come and passed since I was hospitalized with a "mystery" illness. The day of the royal wedding was the exact day. It also happened to be my oldest son's 13th birthday (April 29th). I totally forgot that it was the day that marked a year since I had become so ill. I started this blog since I had such a hard time talking (stutter), also so that I could let family know what was going on with my health, and also to help raise awareness in this strange illness. And, there have been over 9,000 hits! That is just AMAZING.

I have had many ups and downs. The tethered cord surgery has brought me some relief from leg weakness, and decreased the frequency of migraines, decreased my stutter, and so on. Best of all, I am released to drive short distances. However, there is no cure for Chiari or Ehlers-Danlos Syndrome. Chiari is a neurological condition so I have relapses and remissions. Everyday is still a struggle in someway or another but I am glad to have some relief. I continue to go to physical therapy, cognitive therapy, and vision therapy every week. It almost feels like a full-time job.

Dondi and I are headed to The Chiari Institute in a couple weeks. We both have imaging and appointments with Dr B, the neurosurgeon. This will be my third trip in a year. It is in Long Island and I have yet to make it into the city for site seeing. Maybe someday.

I would like to take a moment to thank everyone that has helped us in the last year. It is greatly appreciated and did not go unnoticed. I did write a lot of Thank You notes but was not always able to write them for everything that was done for us. Please know that we could not have made the trip to New York without your help! I am so happy we had the opportunity and that the neuro tissue is beginning to heal.

Tonight's episode of Grey's Anatomy had a child being tested for Chiari and when I was in the hospital last year, House had a man with Chiari. Maybe, we are starting to get the word out.

Please help me continue to spread the word by finding a Conquer Chiari Across America 2011 walk near you! Visit ConquerChiari.org to register now. Chiari is painful and debilitating. Help us find a cure and raise awareness!!!!

I am officially "disabled"

According to the social security office, I am officially "disabled". This is very much a blessing and I am relieved. However, this is a bitter-sweat pill to swallow. I worked EXTREMELY hard to get through nursing school. Now, I know that it was not normal to have headaches everyday of your life and to have chronic fatigue (or whatever you may call it). So, it was very amazing that I made it through nursing school, working, and raising children and as the nursing student body president.

In October of 2009, I was in a car accident. I did not realize it at the time but that accident changed my life forever! Whiplash and spinal cord damage, would show up later. It was also the trauma that initiated the problems with my Chiari. I immitiatly had problems swallowing, bowel problems, bladder problems (initiating flow and going up to 14 times a day), low back pain, etc. I went to doctors for all of the symptoms and was sent to seperate specialists for each seperate issue. The headaches worsened and increased in frequency.

Then on April 29th 2010, I was hospitalized for fever, headache, sudden onset of stutter, balance problems, and right-sided weakness. I thought I was having a stroke. They did a spinal tap in the ER on an already dehydrated patient. After 2 days and positive Babinski (not a good sign), I asked for a neuro consult. We also asked the nurse to print out the signs and symptoms of Chiari. She did so and I had all of the 47 symptoms except 3. On the third, fourth and fifth day, I ask to be transfered to Barrows. I was told that I was not "acute" enough. After 5 days, I was sent home with paperwork on headaches and no hope. After being sent home, I worsened and got the remainder of the symptoms, including not being able to walk unassisted. A month later, I picked up my medical records. Imagine my surprise when I discovered that one of my MRI's showed "low-lying cerebellar tonsils". I was forced to fight an uphill battle with no assistance from the medical community in Arizona. I was told "your mind is a powerful thing" and "you have none of the symptoms". So no one would treat my pain. It was a VERY dark and painful time.

I took my medical records and mailed them to The Chiari Institute. Thank goodness I had my sister, who also has Chiari, to help me with the paperwork and to direct me. I was accepted and was able to get diagnosed and have surgery. It seemed like an eternity but was a much shorter time then most people wait. Even when I returened to my primary care physician with diagnosis of tethered cord, ehlers-danlos syndrome, and Chiari, he still treated me awful. I think he may have just been overwhelmed by me. I finally was able to get a new primary care provider. She is wonderful and works with me. What a world of difference a provider can make!

In November of 2010 I had my tethered cord released and am doing much better. However, there is no cure for Chiari. There are only surgeries for symptom control at this time. So far, there are four members of my family affected by the surrounding illnesses of Chiari. It is debilitating and painful. I am glad that I was approved the first time for disability and I did not have to get an attorney. My family feels very blessed. Thanks to everyone that has been so supportive!

Registration is OPEN!

Registration has opened up! Please visit ConquerChiari.org to find a walk close to you. So far, there are 46 sites in 30 states.

If you are not able to walk, you are still able to donate on that same site. It is a charitable donation and usually can be written off on your taxes! (Check with your tax preparer.)

This is very personal to me. My sister and I are confirmed Chiarians and there are many others that are showing signs in our family. This is not a rare disease. It is just rare that the healthcare communities knows much about it! Please help me change that! I did not even get a diagnosis in Arizona.

As Always, thank you for your support!

Please contact me if you are interested! Corporate sponsors over $100 will be recognized on the T-shirts given out at the event itself!

Conquer Chiari Walk Across America 2011
Corporate Sponsorship Opportunities
The Walk Across America


The Conquer Chiari Walk Across America is an annual fundraising and awareness event comprised of a series of local walks held on the same day. In 2010, the event was held at 28 different locations, involved more than 4,000 participants, and raised over $330,000. We are proud to say that 87% of the money raised will be used directly to fund research projects and that only 13% was required for overhead and expenses. This year the walk will be held on September 17th, and it is our goal to raise at least $375,000 for research.

About Chiari Malformation:

Chiari Malformation is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms. It can strike children and adults and cause crippling headaches, neck pain, balance problems, trouble breathing, numbness and weakness in the limbs, and a host of other problems. To date there has been very little research on Chiari and fundamental questions regarding its underlying cause, diagnosis, and treatment re
estimated that Chiari affects 300,000 people in the US.

About Conquer Chiari:

Conquer Chiari, known formally as the C&S Patient Education Foundation, is a 501(c)3 public charity dedicated to improving the experiences and outcomes of Chiari patients through education, awareness, and research. The Conquer Chiari website (www.conquerchiari.org) is the single most comprehensive source of information available on Chiari and related topics.
We are looking for corporate partners to help us achieve our mission. Please take a moment to review the sponsorship opportunities described on the next page. If you would like to sponsor the Conquer Chiari Walk Across America, simply fill out and return the attached form or sign up on-line at www.conquerchiari.org.
For questions or more information, please contact:
Rick Labuda, Executive Director, director@conquerchiari.org, 724-940-0116.

THANK YOU!

CCWAA 2011 Corporate Sponsorship Opportunities

Sponsorship Levels
National ($10,000+) – Company Name/Logo prominently displayed on T-shirts and signage at every walk site; recognition on Conquer Chiari website home page; verbal acknowledgment at every walk event; listed in press guide at every site
Signature ($1,000+) – Company Name/Logo largely displayed on T-shirts at local walk site; verbal acknowledgment at local walk event
Local Plus ($250+) – Company Name/Logo displayed on T-shirts at local walk site
Local ($100+) – Company Name displayed on T-shirts at local walk site

The C&S Patient Education Foundation is a Pennsylvania nonprofit organization (501c3), which is dedicated to improving the experiences and outcomes of Chiari & syringomyelia patients through education, awareness, and research.
C&S Patient Education Foundation is located at 320 Osprey Court, Wexford, PA 15090, and may be reached at 724-940-0116.
You may obtain a copy of the charity’s financial report by writing to the charity’s name and address. The charity may be exempt from registration as a charitable organization in a number of states and jurisdictions. However, if this charity is required to register and comply with laws related to charitable contributions, residents of the following states may obtain information as follows:
Arizona: Financial information filed with the Secretary of State, State Capitol, 1700 West Washington, 7th Floor, Phoenix AZ 85007-2808, is available for public inspection or by calling toll-free, 1-800-458-5842.
California: The official registration and financial information regarding the charity can be obtained from the Attorney General’s Web site at http://caag.state.ca.us/charities/.
Colorado: Charity’s registration number: 20033005084; Colorado residents may obtain copies of registration and financial documents from the Secretary of State by calling (303) 894-2680 or at www.sos.state.co.us.
FLORIDA: FL Registration # . A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE WITHIN THE STATE, 1-800-435-7352 or 1-800-FLA-Yuda POR ASISTENCIA EN ESPANOL.
Georgia: A full and fair description of the programs of C&S Patient Education Foundation and our financial statement summary is available upon request at the office and phone number indicated above.
Illinois: Contracts and reports regarding the charity are on file with the Illinois Attorney General.
Kansas: C&S Patient Education Foundation’s Kansas registration number is The annual financial report for the preceding fiscal year is on file with the Secretary of State, 1st Floor, Memorial Hall, 120 SW 10th Ave., Topeka KS 66612.
Maryland: Copies of documents and information submitted by C&S Patient Education Foundation under the Maryland Charitable Solicitations Act are available for the cost of copies and postage from the Secretary of State, State House, Annapolis MD 21401, 1-410-974-5534,(1-800-825-4510 within Maryland).
Mississippi: The official Registration and financial information of (charity’s name) may be obtained from the Mississippi Secretary of State’s office by calling 1-888-236-6167.
New Jersey: INFORMATION FILED WITH THE ATTORNEY GENERAL CONCERNING THIS CHARITABLE SOLICITATION AND THE PERCENTAGE OF CONTRIBUTIONS RECEIVED BY THE CHARITY DURING THE LAST REPORTING PERIOD THAT WERE DEDICATED TO THE CHARITABLE PURPOSE MAY BE OBTAINED FROM THE ATTORNEY GENERAL OF THE STATE OF NEW JERSEY BY CALLING (201) 504-6215 AND ARE AVAILABLE AT www.state.nj.us/lps/ca/.
New York: New York residents may obtain a copy of (charity’s name) annual report by writing to the Office of the Attorney General, Department of Law, Charities Bureau, 120 Broadway, New York NY 10271.
Pennsylvania: The official registration and financial information of (charity’s name) may be obtained from the Pennsylvania Department of State by calling toll-free, within Pennsylvania, 1-800-732-0999.
Virginia: A financial statement for the most recent fiscal year is available upon request from the Division of Consumer Affairs, Department of Agriculture and Consumer Services, P.O. Box 526, Richmond VA 23218; 1-804-786-1343.
Washington: A Notice of solicitation required by law is on file with the Washington Secretary of State. You may obtain additional financial disclosure information by contacting the Secretary of State at 1-800-332-GIVE.
Vermont: How Contributions Are Allocated Between Charity and Fundraiser. For information on how much of your contribution goes to the charity and how much to the paid fundraiser, contact the Vermont Consumer Assistance Program, Morrill Hall, UVM, Burlington VT 05405, tel. 1-800-649-2424, or the Vermont Attorney General’s Internet website, http://www.atg.state.vt.us/
REGISTRATION WITH A STATE AGENCY DOES NOT CONSTITUTE OR IMPLY ENDORSEMENT, APPROVAL OR RECOMMENDATION BY THAT STATE.