My children's book on Chiari Malformation

Welcome!

Welcome to my blog! I have come to love writing and teaching was a passion until a condition called Chiari Malformation
caused me to have to quit my job. With a Masters of education degree, A Teaching certificate, and four years of teaching Deaf children k-12 grades, I have decided to write a children's story about my condition. There are no children friendly books out there about the topic and more children are diagnosed everyday with this disorder. I felt that it is important that there be something to explain to them why they are sick and also to help nurses, doctors and other hospital or doctor office staffs to understand what the child or adult is going through, how much pain they are in and just help them truly understand and be able to empathize with their patients. I have not found that in my experience. It is hard to understand unless someone explains. even then my family doesn't understand how I feel and that there are many things that i just can't do. I was diagnosed as an adult at the age of 25. i got to the point where fatique and pain have literally taken over my body and functioning everyday is difficult. For many though, they get relief from the surgery needed to relieve the pressure off the brain where it has grown through the skull and is infringing upon the spinal cord, squishing them both. there is hope for most people with this condition. one in every 1000 people have this condition. Many never show symptoms and don't even know they have it. Some have symptoms and need surgery to relieve the pressure.

Tuesday, January 13, 2015

I'm back after a long break for life

Life got a hold of me for a while and I am sorry to all my readers. I am back and hope to be able to post more often. I am still trying to find someone publish my book without charging me an arm and a leg. I am now interested in writing a memoir as well about my life with chiari and the lessons I have had to learn through pain, hard work and plain old determination. It hasn't been a glamorous life but it's my life. A story worth telling.

Monday, June 25, 2012

I was just looking at my post and know that I have not posted for a while. I want to break down the meaning of the many things that can go wrong with or e caused by chiari malformation so it is easier to see and access:
1. Chiari malformation: when the back part of the brain grows down through the holes in the skull and into the spinal column. (it looks like a cone growing down from the brain instead of the brain being rounded off. see pictures below.
2. Syringomyelia: a cyst-like fluid filled bubble called a syrinx growing in the spinal cord.
3. Klippel-Feil: a natural fusion (from birth) in the neck or c-spine.
4. Cerebral Spinal fluid: The fluid around the brain and central nervous system including down the spinal cord that helps the nerves and the system to function properly. Chiari ( or the cerebral tonsils) while growing down the spinal column can block of the fluid causing headaches and other problems.
5. Tethered Cord: A condition which is thought to possibly aggrevate or even cause Chiari, where a cord that runs through your spinal cord, that is supposed to be loose and waving, is shorter than normal and gets tight pulling on the brain. It is not a nerve and can be clipped during a surgery without causing any problems with the nerves. It looks and feels different and a chiari specialist can clip it allowig everything to eventually go back to normal. that is the hope.
6. Decompression: surgery done to allow more room for the misplaced brain. some are successful with this, some (me included) who didn't know enough at the time to go to a chiari specialist, still have lots of residual affects and pain. It is a surgery where they cut a 4-6 inch incision in the back of the head, remove part of the skull (how much is a controversy, among doctors) and sometimes remove parts of the vertebrae (back) and then cut the dura (membrane around the brain) and add an artificial or animal membrane to replace it ( this is also in debate at which is best.) I feel that was one thing that did work on me (artificial). this membrane is bigger again making room for the misplaced brain. the dura is sown up, and the skull is left out and the head is stapled. recovery depends on the person and the age.

Remember not every person with this has every one of these symptoms or needs all of the surgeries. I would recommend that you really look into your doctors. how many of these surgeries have they done? Do they know what Chiari is? If they tell you that is not what is causing the headaches and that they are just migraines ( if diagnosis is confirmed, they know nothing about it.) If you want more information contact me here on this blog or at hyoungdell@msn.com

Wednesday, January 25, 2012

It has been a while since I last posted, but I have a new goal this year to post at least one day a week. It would help me a ton to get feedback from you. Tell me your story. I need to know that there are other people out there. besides me with Chiari. I know you are out there or that parents who have children with the condition are out there, but it helps us all to be reaffirmed that we are not alone in the battle with this disease. I will not think you are wierd for reaching out to me and contacting me. i know what it feels like. We need that support from each other. People who understand. I really appreciate and remember every one of you who have contacted me. Facebook is a good medium, for safe contact. I am still searching for a publisher for my book. I hope to find one soon. well until next week. hang in there.

Tuesday, August 23, 2011

two more organiztions for travel I found

Miles for Kids
Run by American Airlines
Website: http://www.aa.com

volunteer Pilots Organization
Website: http://www.volunteerpilots.org
I
I hope that with all these suggestions that chiari patients and thier parents will get free or reduced travel to the destination of thier choice.

emergency travel resources for patients who need medical attention

i have noticed on some some of the support groups i have been following that there is a need for this information on reduced or free travel for patients seeking medical attention.
I had a consultation at The Chiari Institute in NY in 2008 and a friend and neighbor gathered this information for me. My friend and I flew free round trip to NYC using donated skymiles a guy collected from others and put towards our flight. I also have a lot of information for parents and children on private jets (when there are empty seats etc... see below for more details on these sites.

1. Miracle flights for kids can fly FREE to thier treatment centers around the country!
2756 Green Valley parkway Suite #115
Green Valley, NV 89104-2120
phone: 800-359-1711 or 702-261-0494
www.miracleflights.org
email: amcg@miracleflights.org

2. Corporate Angel Network, Inc. is a national public charity, that works directly with patients and families to coordinate travel needs with the flight plans of some of the nations largest corporations. More than 20,000 flights with cancer patients aboard. CANCER patients ONLY
Corporate Angel Network
Westchester County Airport
One Loop Road
White Plains, NY 10604
phone: 914-328-1313 or patient toll-free 866-328-1313
email: Info@CorpangelNetwork.org
website: www.CorpAngelnetwork.org

3. Ronald Mcdonald House: to check for a house in your destination go to http://www.rmhc.org
They have specific rules and sometimes specific patients that can stay depending on the location. Check with your location to find out all the rules.

or there are also National association of Hopital Hospitality Houses. I checked these out and they are only for the patient and one other person for about a week and you must apply early to get spot.
PO Box 18087
Asheville, NC 39914-0087
phone: 800-542-9730 or 828-253-1188
Email: helpinghomes@nahhh.org
website: www.nahhh.org
they provide lodging and other supportive services to patients and families when confronted with medical emergencies.

4. airLifeLine provides FREE air transportation nationwide for people with medical and financial need and for other humanitarian reasons (such as wish granting trips).
email: staff@AirLifeLine.org
website: www.AirLifeLine.org

5. Air Charity Network (ACN) provides free air transportation to special health care facilities or distant destinations.
410 1st Ave. N.W.
Rochester MN 55901
phone: 877-621-7144
Website: www.AirChairityNetwork.org

6. National Patient Travel Center
4620 haygood Road Suite #1
Virginia Beach VA 23455
phone 800-296-1217
Email: info@nationalpatienttravelcenter.org
website: www.pateienttravel.org

7. Wings of Mercy
10720 adams Street
Holland MI 49423
phone: 888-78-MERCY (63729)
or 616-396-1077
Email wings@wingsofmercy.org
website: www.wingsofmercy.org

8. Air Care Alliance
P.O. Box 1940
Manassas, VA 22110
Phone: 800-296-1217
Private pilots volunteer their time, using 4-6 passenger planes, transporting seriously ill patients between their state of residence and state of treament. patients must be ambulatory and condition must be stable. physician clearance and consent form is necessary. No medical equipment is allowed on board. arrangements should be made one week in advance. services are at no chare with a 500 mile flight range. regerrals for linkage available for additional flight distance.

9. Angel flight
Website: http://www.angleflight.org
Flies withing 13 western states....call to coordinate flights. They have a west and East Angel flight program. I looked in to this and they can only fly so many miles on thier half of the US. I think it is 500 miles. so if you are flying mid US EAST or West or vice versa then this might work for you. check out the website for more information.

10. continental Care Force
phone: 281-261-6626
this program is through continental and it provides free air transportation to medical patients with financial need.
This is the program I used. a friend and I travelled round trip on continental airlines to TCI and only had to pay $15 total for taxes. the guy gathers donated flyer miles until he had enough for two. that is no easy feat. that was 25000 flyer miles. so if you have a financial need two can fly for free.

Wednesday, May 4, 2011

Another draft

I have written and revised and read and revised so many times that I think maybe I let myself take out of my book what is true to me and my experience. I was an adult but I don't feel that my experience is a whole lot different that a little kids other that for them I am sure it is more traumatic and they have less knowledge of what is going to happen to them. In some ways that is good, but in reality I also think they know and understand more than we think and I need to be true to them as people and still simplify the complicated terms so that they have some understanding of what is happening to thier body, what is going to happen and why it is supposed to help. I also need to leave it with a positive note but not be unrealistic to the fact that it's possible that surgery may not help them or may only help temporarily and they are smart enough to hear options. the parent can choose but do you think the child should at least understand? Well these are my thoughts. I would love comments to know what people think of these ideas. I am asking for feedback and will take it all as necessary.

Sunday, April 10, 2011

the chiari and syringomyelia foundation CFS conference in Cleveland

http://www.csfinfo.org/node/214
this website at the cleveland chapter of CSF has some good information on the diseases or conditions and symptoms that we as chiari and/or syringomyelia patients face. One of the videos I posted on my blog talks about fibromyalgia vs chiari and ther the realness of pain and how we can learn to manage our pain and therefore manage out lives. the pain will be there but the doctors say there are ways to get our lives back.
(These lectures are focused on older children and adults. children situations are often very different. every patient is also different.)

My Writing Goals

As a writer, setting goals is very important. I am a children lover and true believer of books and teaching children to read. My motto is: If you can read, you can do anything!

You know, there is a book out there on most any topic. Reading them can help you do things yourself in your house, learn to write, paint, and even on just being yourself, but encouraging you to be your best self. Well these are my goals and reasons I write. I hope that these goals and purposes will make me a better person and a better writer for sticking to them.

I want to write this children's book because :

1. I love children. I want children with Chiari Malformation syndrome to understand their illness and help others to be empathetic about their situation.

2. Being a Chiari patient myself, I know what it's like how it makes you feel, and how it limits you from doing many things. I want to educate parents of Chiari patients, as well as doctors, nurses, and other medical staff. waht better way than with a picture book that breaks it down. You'd be surprised how many medical professionals don't know what Chiari malformation is.

3. I want to encourage children to read all kinds of genre, whether it be fiction, nonfiction, or any other readable thing, newspapers, magazines, comics, etc...

I will accomplish these writing goals by:

Things i hope to keep with in my writing to improve

1. I will work hard at my writing by revising, revising and revising again.
2. I will improve my grammar and mechanical skills as well as my writing technique and tightening the story to make it the best it can be.
3. I will take advantage of every, class, seminar, conference, how to book etc... that will focus on writing technique.
4.I will respect my audience by observing a child in group settings, practicing up on child development so that i can hone my writing to the children's different levels of learning.
5. I will become part of the rich tradition fo children's literature by reading as many children's books as I can get my hands on. award books and non-award books alike.
6. I will learn the conventions of the genre and the audience of children's literature. choosing a category and studying up on the "rules" of each one, following up on how a good book follows or breaks them, and i will speak to many experts including librarians, teachers, writers, and editors about the categories and genre of books i am exploring.
7. I need to determine the tools needed to help me as a writer and get them together. I plan to apply for contests allowing myself to explore other genre's, develop professional contacts with those in the industry who can give help and advice, and I need to develop my own techniques and use others to engage the young readers and to get a reaction from them.
8. i will learn the rules of submitting manuscripts by looking up publishers in my genre and researching the guidelines of each. I will read picture books published by these publishers old and new.
9. i will take chances by learning to write in different genre's , entering contests of all genre's for learnings sake and I will submit my manuscript to an editor or publisher to have it published. this may not be in six months but i plan to make it happen.
10. I will treat my writing seriously, taking the time out of the day to write, look at and consider professionl organizations such as SCBWI and others. joining is a big step. I will also check out my google reads webfeeds and blogs on writing, medical information that may enlighten me while writing this book and educational games, teacing reading and writing to deaf and hearing children, what is the difference? books that i loves etc...
I hope these goals will help me when I am discouraged, to keep me on the my writers map and remind me the real reason I am writing this manuscript and focusing so much on reading. If I am confused, or lack confidence, i hope looking back will give me the enlightenment to continue. this map will lead me where I know i want to go, through all the hard work, and overwhelming moments. these goals will guide my writing and put me back on track.

My children's book on Chiari Malformation