Life outside of Chiari

I thought I'd start a discussion on what we all like to do/what we do outside of our Chiari lives.

What are our interests etc.

Me..I love to read. Harry Potter is my absolute favorite! Twilight fan. <3 I am obsessed with Disney! I'm artistic and crafty.

I like making things. I can go in a craft store and be there for hours (like AC Moore) just looking at stuff I'd like to buy. I woodburn. I paper craft. (Make cards/scrapbook/photo stuff/anything) Chiari inspired things as well.

If I can get myself (and my room) organized soon.. I will have a shop on Etsy selling my things. It'll be called BearlyBurnt :D

I have a chiari blog. Which most of you already know. If anyone would like me to tell your Chiari story on my blog..let me know! I haven't done any story other than my own and would love to feature others!

I have a twitter. @BearlyBurnt you can follow me:) I'll follow back!

My boyfriend Joe and I have been together for over 3 1/2 years<3 He is my support and I'm so glad I have him!

So what about you guys?

1 Like

Wow sometimes I forget that I have a life outside of Chiari. Well as for work I am a full time Nanny I have been a nanny for 11 years now. i love my job of helping to raise and nurture children although it has become very hard to work since I have gotten sick. As for my spare and pain free time I like to bake cakes and cookies but I give most of it away since becoming Diabetic. I also have a dog her name is Robin she’s big 90lbs border collie - dalmatian mix. I like to take her out to the park and on good days for long walks it’s good for me and the dog. Most weekends I spend at my boyfriends house. Saturday is our date night. we will go out to dinner, movies or meet up with other friends and other nights we stay in depending on how I’m feeling. These days I spend alot of time online researching stuff on Chiari. I try not to let it control my life but sometimes I find it’s all I can think about.

OMG I need to see a picture of your dog!! lol I have a sheltie, Coco. I call him poopers though. I had a border collie mix named Cassie for 16 years. I miss her so much! I grew up with her.

For once I completely forgot about work! I work as the Assistant Guest Service Manager at a hotel in Gettysburg, Pa (Visit me if you come for vacation! lol)

I have a bag full of folders and a notebook. The folders are all filled with chiari related things I've stumbled on and printed out. The notebook is filled with random ideas I have and don't want to forget - related to chiari. One day I hope to actually go through all the folders and papers I've printed and read them all. lol I would bet my left foot there are repeats printed.

Alicia this is a good idea. I have been married for 22 years and have 4 girls. Their ages are 20, 15, 13 and 1. My 15 yr old niece lives with uso. When I'm not working or going to one of their events, I am quilting. I love to quilt. My baby girl doesn't have her own room because I won't give up my sewing room. I am currently working on a charity quilt for the ACS Relay for Life. I love to make charity quilts and t-shirt memory quilts. We have a 90 lb Golden retriever named Cosmo that loves to play, a Pekinese named Diamond and one cat (Kallie). There is never a dull moment at our house.

My diagnosis has been hard but I am trying to stay optimistic. My family has been great. An advantage I have is my good friend and sitter has Chiari. I am able to get support from her and support her.



Fantastic discussion!! I have 2 girls Victoria 14..Julia (AKA ..JULES) husband Michael and 4 dogs..3 Shizzu(SP) and 1 sheltie..

I like to be as active as I can with the girls and their activites. I also like to read when my vision is cooperating. I have a small online book selling business...I love books!!!!

I look forward to the is beautiful here in the summer with all the lakes and such.

Sorry to say..I need to broaden my horizons and get more involved in other things...I use to go the the ladies Bible Study..but since I help care for my mom it is hard to attend.

I love junk shops, yard sales ect...NO, I WILL NOT BE ON THE SHOW.."BURIED ALVIE...HOARDERS!!" Though the girls tease me about the books..being a book hoarder!!!LOL

Have a great day gang,



Hopefully, I will be celebrating my 50th and my 2 other friends b-days on the Greek Island this Oct, I have always wanted to go too.

Lol Lori I want to see pictures of the doggies!!! Especially the sheltie!! I love shelties & collies!! <3

I'm a book hoarder too. I've outgrown my bookshelf. :\ lol I won't let myself buy books until I've read the ones I have. (Because I have a tendancy to re-read over and over instead of finishing my reading list lol) I own a lot of Disney books too. All informative about disney world, Walt Disney, everything. I don't just love the animation. I love the idea behind it. (When I talk about disney I get really excited).

I have been to Disneyworld twice. Once when I was about 5 or 6 years old. And the 2nd time was in 2008 with Joe.
I hope to be able to visit every disney theme park in the world before I die. I have a Stitch tattoo in the middle of my upper back. He is "crawling" out of my skin. I picked that image for several reasons: My love for disney. I had stitches in my head when Lilo & Stitch came out and I got my first car which was decorated in hawaiian...which I named stitch. So it all worked out. Plus it looks like stitch is fighting. So that to me represents being a fighter:) My room looks like an adult version of a 5 year olds. Kids come in my room and love it and head for the disney stuff...I freak out because they're not "toys" theyre "collectibles" lol

Julie which Disney park have you been too??


WHen I am book scouting I will be sure to keep an eye for you for any Disney Books.....I will give them to you...I am not selling books to anyone here at our community..If anyone is looking for a specific book ...message me with the title and author and I I have it , I would gladly send it your way..if I don't have it..i will keeep my eye out.

Also ..yes..I have to get my dogs up here on the site!!!



Aww Lori thats really sweet of you!! I don't mind paying for them if you found some!!

You would love this store we have here near me. Its called Black Rose Antiques...but its basically like a giant random yard sale. I find all kinds of old disney stuff there. (Stuff I can't afford lol) Or old antique crafts and and just old "junk" that is worth a lot sometimes. Old Records and things. Its a big store. My mom and I could spend hours in there.

I always check out yard sales for Disney albums. Thats usually when people sell them cheap. Or good will. I use them for decorations or just to collect them.




Love This!!!

Let' see... I am a wife of soon to be 10 years this September, to my High Scool Sweetheart. I have 3 Boys ages 7, 4 and almost 2 years old. I LOVE Scrapping, Baking, Gardening and have lots of Travel Plans in my future. I want to go to Disney World again, absolutely LOVE it there!!! Now that I have time I plan on dedicating tme to my Community and to help Educate and raise Awareness for Chiari in my area. I love people and plan on doing more volunteering and "pay it forward" to who ever, when ever I can. I consider myself quite fortunate and would like to help others to gain the same appreciation for life. Before Chiari I was a business woman. Worked too many hours and dedicated myself to work. I believe I was blessed with Chiari (even thought some days really stink), so that i would stop and take a look at what I was missing out on and purely taking for granted. My Husband, my Boys, Friends and the ability to enjoy life. Chiari has given more than it has really taken. When I am further along in my postop recovery and feeling good, I plan on enjoying what I am lucky enogh to have. Glad to see you all are too :o)

Much Love and Blessings,


Hmmm so many disney fans. Sounds like there should be a Chiari Disney Meet haha!! At least we'd all be togther sad watching the rides as we can't get on them :/ lol


I love this!!

I am 40 years old. I've been married for 19 years to a really wonderful guy. We have 7 children...2 girls(19 and 2) and 5 boys(17,14,13, 10, and 4). I have three English Bulldog, a Cairn terrier, and a Pekingese puppy. We lost our 19 year old cat this past October. She was a legend among my kids friends because she looked a thousand years old. I hate the winter and would not care if I ever saw snow again. I LOVE all kinds of music. I enjoy going to church and hanging out with my kids and husband. I love to be in the water which is I guess why I hate the winter. One of my favorite things to do is to sneak outside on a summer morning and sit on the deck with my husband and a cup of tea before all the kids wake up! I love to read and I am obsessed with my kindle! It just might be the best birthday present my husband ever gave to me. I really like old movies and try to get my 19 year old daughter to watch with me but she will have none of that. She wants color so I tried Gone With the Wind(my favorite) but the color didn't fool her! My children are my greatest gifts and would have loved to have more but Chiari has put an end to that so I am looking very forward to grandchildren(not too soon though!)



Oh and I love Disney too...well the princesses anyway! Belle and Rapunzel being my favorite. I've never been to Disney World but I have been to Disney Land.


Jen, that is funny how you say your 19 'will have none of that' old movies...My 14 year old is the same way with certain things!!!

I have never taken my kids to Disney...So...If any of us hit the lottery big-time....lets' all meet up there at Cinderellas'

Castle ,DEAL????



i like craftying, use to enjoy wood burning but have found that to become challanging since chiari. tried learning to sew, but well other then using a needle and thread the machine just doesnt work for me. LOL. listening to music, computer geek (as some would like to call me). like walking love waterfalls, iam totally into tigger and tweety ;)

i have 3 tattoos and one on the way.

i have four sons two step daughters ages boys 23,21,17,11 girls 29,23

husband joe is a wonderful support system for me married 5 yrs together 12

stay at home mom, no pets, originally from Pa moved to Mn in june of 05

Lisa...I had always wanted to do wood burning....I can see where it could be difficult with Chiari.

I so wish I could sew..but have no desire to learn...why I say I wish I could sew is....I have buttons all over the place that needed to be sewn on!!!LOL

I love your newest tatoo.


Life outside of Chiari?? I am thinking of taking a huge risk ..for me, anyway..I am always afraid to commit to something in case I just can't do it..between my own health issues and caring for my mom....but I really think it is time to take a chance..what do you guys think???

My Victoria who is going into 10th grade and is into cheerleading and Lacrosse...she wants me to be the Booster Club president for the cheerleading.....I know zero about such things....I am good at donating baked goods ect..for fund raisers but not be 'the head' of the entire thing, ya know..I am better at being on the side lines..I think that is mainly my insecurity..those here that know me ..know that I am sensitive and insecure ...though , through this site...I can see that I am ok, I am productive, even though I do not 'work' outside the home....

So....should I tell the Coach I will do it???? Funny, pushing 50 ..and I am afraid to do such a thing.....weird , I guess...

Love ya guys,


Thanks Abby!!!


Ok ladies, my turn!

Hi, my name is Patty and I am a Disney-holic.....

I love Winnie the Pooh, Mary Poppins, everything Disney! We even saw Mary Poppins on the stage over Christmas! My husband and I even went on our honeymoon to Disney World (it will be 12 years in September).

I will be 39 on Tuesday-and as long as Ms Clairol is still around it's all good :)

I have a wonderful husband who through matching sarcasm and love keeps me going with our 9 year old daughter and 5 year old son.

Last year I decided to participate in the Susan G. Komen 3Day walk for the Cure and this year my kids and I are walking in the Relay for Life and we started a team in honor of my husbands battle with a-fib so we are doing the heart walk in October and I just saw that there is a Chiari walk in's a good thing I feel best when I'm walking...right now anyways.

I love reading, I read pretty much anything, my husband bought me a kindle for Christmas-which honestly I didn't think I would like because I'm kinda old fashioned and thought I would need to feel the book but I love the kindle!

There are so many things I want to try: jewelry making, getting back into scrapbooking, take more pictures, drive a race car, teach a bible study class, yes I said drive a race car-I have a need a need for speed!

JEN- I love old movies too! Gone with the Wind, Breakfast at Tiffany's, My Fair Lady, anything with Katherine Hepburn, old musicals, Auntie Mame! My daughter will watch them for a little while but the attention span of the young...

Love to everyone!

I am 49, soon to be the big 5-0! I don't feel like 50 though. I still feel like maybe 30. I don't have a lot of hobbies anymore, but I do like to walk. I love to walk on the treadmill at the gym, I just don't get there as often as I would like to. I also love to read and belong to a book club. It's great because you have a deadline for reading the book in order to participate in the discussion when we meet. I have a Nook so it is great to just download the books on that and not have to go to the library or bookstore and purchase the book. I have so many books that I am going to donate to our flea market at church. The books are much cheaper to purchase on the Nook than buying the actual book. I like reading biographies the most, but I will attempt anything!

I have two dogs. Wiley, a golden retriever mix, 2 yrs old, 100 pounds. He is a very loveable, goofy, clumsy guy, that we came to adopt into our family when he wasn't being cared for properly by my daughter's roommate. She brought him home with her about 18 months ago for what was suppose to be about a 2 month stay. He's never left and we wouldn't let him leave now! We also have Lucy Skye, a chihuahua, 1 1/2 yrs old, 12 pounds. She is the love of my life and my best friend. She follows me around all day and loves being spoiled! She is what they call a blue chihuahua, she is actually a beautiful gray color all over and has the most incredible blue eyes. Very unique and very beautiful:)

That's about it for me!

Yeah my ahnd shakes now when I wood burn after awhile. But I love doing it so I just do it as long as I can then take a break.

I love watching old movies too! I love Audrey Hepburn. Fred Astaire, Bing Crosby, Frank Sinatra all of them!

Lisa W said:

i like craftying, use to enjoy wood burning but have found that to become challanging since chiari. tried learning to sew, but well other then using a needle and thread the machine just doesnt work for me. LOL. listening to music, computer geek (as some would like to call me). like walking love waterfalls, iam totally into tigger and tweety ;)

i have 3 tattoos and one on the way.

i have four sons two step daughters ages boys 23,21,17,11 girls 29,23

husband joe is a wonderful support system for me married 5 yrs together 12

stay at home mom, no pets, originally from Pa moved to Mn in june of 05