My children's book on Chiari Malformation: 2010

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, December 21, 2010

frustration with my doctor

I went to my regular internal medicine doctor today and she insists that I just have tension headaches and that my chiari malformation is causing me no problems. the problems is that I know my body and this pressure pain and bulging feeling i feel i the back of my head is not muscle tension. Other Chiari patients have the same problems and many of my other symptoms, such as; achy arms, chronic sinus problems, irritable bowel syndrome, acid reflux, chronic fatique, dizzy spells, and sometimes especially recently i have noticed vision problems on occasion. I also sometimes have problems swallowing. I know I am not crazy but my doctor seems treats me like a hypochondriac and shoots down every time I try to tell her my symptoms it comes up being my fault or that i need to get out more, or i am not up enough to make me sleep at night, even though i feel so exhausted i can hardly function. or it comes to the fact that she only gets 3 hours of sleep a night from her new baby and she is not emotional, or that i need to just get off of my pain meds because they are my problem. i would not have gone on them if I hadn't been in pain in the first place and so obviously they are not the problem but are helping me to somewhat function. I am not sure what to do since my neurosurgeons wrote me off. i am down to trying to get in to see my mom's neurologist, whom i am afraid knows just enough to cause problems for me but not enough to know that she is doing it.

Wednesday, December 1, 2010

Hello Again

it has been awhile since I last posted to thank everyone for voting me one of the top 20 blogs. I really do appreciate it. It definately was not something I expect. I have added some little games courtesy of Softschools. com that have to do with the brain and skeletal system if you need to show or help someone understand Chiari malformation. they are excellent pictures of normal brains that you could use to show what happens to our brains.

Also if you look just below the interactive games, there is a picture off the Chiari Institute website (Manhassett, Long Island, New York) www.thechiariinstitute.com

I need some feedback on what people feel should be brought up in a Children's book on Chiari Malformation. Maybe you have some ideas on how to keep the story light but still have information that will help children to understand what Chiari malformation is, and enough information for someone like a medical professional who needs to know about it, can pick up the book and be able to know how to diagnose it, if someone who had it came to their office, or at least know enough to send them for an MrI and be able to recognize it. If anyone has any ideas for me please leave a comment on my blog or log in at Dailystrength .com in the chiari malformation support group to comment. or go to Chiariinternational.com and log in and leave me a message there under the parent group. Thank You. I appreciate you being willing to provide imput.

Friday, November 5, 2010

Top blog award

I would like to thank all my readers for nominating and voting me into the top 20 blog awards.

~Heather Youngdell~

On October 27, 2010 i received the following email:

Dear heather,

Congratulations! Sarah her, and you blog, My Children's Book on Chiari malformation, was determined to be one of the best blogs to exude overall brilliance, and so it has received our 2010 Top 20 head and Brain malformation Blogs Award presented by Medical Billing and coding!

You can see my name amongst the winners at:

www.medicalbillingandcoding.org/top/head-brain-malformation/#My_Childrens_B

http://www.medicalbillingand coding.org/top/head-brain-malformation/#My_Childrens_B00k_on_Chiari_Malformation

Winners were chosen through a scoring system that included internet nominations, which came from your reader base!

The objective of the award is to not just recognize the great blogs that are out there, but also to create a community in which a blog can be used as a resource for others. We want anyone that desires the yearning to educate themselves in a specific area, to be able to know they can come to place to connect. The resources we've acknowledged and recognized, are blogs we think can educate and help someone learn more about that topic. Aside from the educational aspect, we want those who blog about topics to connect, whether they already know each other or not. they're may be just that one that we find to be a great blog, who doesn't know anyone else that blogs about their topic this is where they come in and hope that I could display the badge in order to show yourself as a proud part of our community. They want to connect the blogging community, to not only share ideas, but also fined motivation, strength and encouragement in each other.

~Sarah Johns~

Saturday, October 16, 2010

My book

I have figured out that I need to use better verbs and nouns in my story and fewer adjectives and adverbs. as well as check other things that may make it more interesting especially in the middle. I know that pictures will add to it and make it mean more and make more sense as well but It needs a little pepping up so I guess that is the next step, improving word usage and correcting. I hope that helps make it more exciting in the middle.

Saturday, October 9, 2010

contests

for the second time now i will post this. and save before leaving the site. I try every month to enter at least one writing contest on top of writing my book. the first one due oct. 31, 2010 on Halloween before midnight.
The challenge is that you must start your story with the following words from Lord halifax's Ghost Book: "After dinner, our host, who was then renting the place, told us that the house was said to be..." You finish the story.
It must be 600 words or less not counting the words provided in the prompt.
Must be submitted by midnight Halloween Oct. 31, 2010.
Other contests
due in Early November
Rivers Press MVP competition due November 1st and it is for book length manuscripts
the holder fellowship (November 1, 2010)
The Roanoke Review fiction contest (due November 8, 2010.)
see fictionwriting.about.com for further information on these contests.

Chiari vs. Non-chiari pictures.

here are some pictures of Chiari vs. non chiari. They are from the Chiari Institute of NY website. Just a little bit of information from my book.

Sunday, September 19, 2010

Scrapbooks gone Digital! Blog: Scrapbooks gone Digital! Digital Scrapbooking Daily Download: SGD Daily Download file: DD_SGD_SEP_19_of_30.zip

Sunday, September 12, 2010

Scrapbooking and writing

I have spent the last two days writing and scrapbooking. Taking risks and daring to be bold in both genres. I tried uploading my education scrapbook page but with no luck so I will need to work on that. I have been scribbling down my writing goals and just doing random writing.

I love that fall is in the air. the holiday season is coming and I am enjoying it. the cool air keeps my room bearable day and night. Sleeping is still and always will be a struggle; however I think I get my best writing and scrapbooking done late and night into early morning. I love writing and am learning more everyday as my own manuscript improves and becomes tighter and new ideas flow in for contests. Deadlines are breaking through the gates faster than I can keep up. I just try to do the ones I can, while continuing my own children's picture book on a topic that is close to my heart.

Monday, September 6, 2010

My book

I worked on my book more this weekend. My manuscript is coming along nicely. i can't wait until it is where it needs to be. i haven't felt well this week so i spent more time reading my manuscript and editing and cutting things out. It has so much information I may need to do a series and have each problem related to Chiari be a different book. right now i am just focusing on this one. i still have a long way to go.

Friday, August 27, 2010

new blog

I think that my new blog is finally up and running and I hope that I can keep it up -to- date. I worked on my story again last night after some friends did some revising and editing. I love the way it is coming along and I know where my focus is now. I still have a lot of work ahead of me. I do enjoy it and hope to perfect it in the next several years. who knows how long it will take? that's all for now. i hope to post more tomorrow.
Heather

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