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.
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.
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.
