Sneak Peek #7

How you doing?



It's a question that is asked thousands, if not millions, of times each day. 

It's a question that is used as more of greeting than an inquisition. 

It's a question that has very little meaning.

It's a question that even your doctor asks.

It's a question that no one don't really expects an answer to.




What if, just once, you gave a truthful answer.


Check back on September 10, 2012 to discover the truth.

#6 - Chiari Comforts

Comfort is a word that most people take for granted.  We, Chiarians, know exactly how lucky the 'healthy' population is to be able to find comfort when its time to relax.  Unfortunately, our plethora of symptoms sometimes makes comfort elusive for us.  The thought of laying down in a calm, quiet space with no pain, no twitches, no visual oddities, no pounding, no pulsing, no jerks, etc. sounds like a dream to most Chiarians.  And, oh, the fun of hearing things that go on within your own body.  With so many symptoms plaguing us, finding recuperative rest is difficult. NFRA (National Fibromyalgia Research Association) has an excellent chart comparing fibromyalgia and chronic fatigue syndrome with Arnold Chiari Malformation.  Most Chiarian experience some symptoms on a continual basis; leaving no time for complete relaxation.  Finding complete comfort can almost become a chore for us.  So we would like to offer some solutions that we have found helpful in finding comfort.  We welcome your suggestions, as well.

Heather gives us a great list of her favorite helpers on her post Getting Through Symptoms.

Adrianne  shares her comforts in her blog post Chiari Comforts.

Kyle reminds us that sometimes its better to focus on the the fun things in his post Chiari Comforts.

April  shares her treatments with us on her post.

Shalunya gives us her thoughts for comfort at Chiari Comforts.

#5 - Creative Chiari

Please allow me this opportunity to sincerely apologize for the delay in posting June's Chiari Carnival.  There was a death in my family and I was assisting in settling the affairs, cleaning out the apartment, etc.  As soon as I had a break from that task my sister fell ill and was in the hospital for several days needing a blood transfusion.  So, life has really thrown a couple of curve balls my way.

This month's theme is Creative Chiari.  We simply wanted to share with our reader's the creative ways we deal with stress, pain, frustrations, life, etc.  This is what we do that puts smiles on our faces and reminds us that beauty can be found anywhere and everywhere.

I am going to start this month off with Kyle's blog Kyle's Chiari Malformation Battle.  He does an excellent job of reminding us to stay young and playful with his Creative Chiari post.  It has inspired me to put a few things on my shopping list. ;)

Life with DisAbilities gives us a great list of things Created by this Chiarian. I love this list! I never thought about it but baking and reading are great creative outlets!

April is still fighting through her symptoms over at Zipperheads.  Please stop by June Chiari Carnival and My Follow Up and send her your words of encouragement.

Chiari-Life shows us some amazing examples of woodburning, drawing and baking on her blog post Creative Chiari.

Shalunya has plenty of photos showing some of the things caused by Creative Chiari!

And we should not forget that blogging is an amazing creative outlet! So dear readers please tell us what creative things you do.  You can also email photos to shalunya@live.com and we will feature them in an upcoming blog post.

Enjoy your summer and find some creative ways to stay cool!

Sneak Peak #5

This month's theme is Creative Chiari. We want to know how Chiarians get creative.  We want to know to see what you create and the unique ways in which you get creative.  Show us the mess, show us what it takes to be a creative genius.

We want you the non-blogging Chiarian to join us this month.  We know that there are plenty of creative Chiarians that do not blog out there. We would love to feature you and your creations this month along with our regulars bloggers.  If you would like to join us either comment below or send and email to shalunya@live.com.

#4 - Summer Blogbusters

Summer always means great movies.  It's a great way to beat the heat and stay cool while still having some fun.  Movie makers love to produce blockbuster hits just for our summer entertainment. It's big business and big money.  Mostly, they are action packed flicks that keep you on the edge of your seat.  But we know that there is a market for more dramatic rolls too.

I think everyone has imagined their own personal life as a movie.  Usually, we are disappointed that our personal lives don't live up to that kind of hype. Typically, our lives are not nearly as exciting, gut wrenching, romantic or magical as we dreamed they would be. However, Chiarians often feel like some of the things we deal with are so unusual that they would lend great dramatic twists and turns worthy of being on the big screen.  So in the spirit of summer and in the spirit of great movies, we have decided to play writer, director, producer, casting agent, etc and create some original movies for your summer entertainment. 

Visit our Snack Bar for your favorite beverage



Please silence your mobile phones




SMOKING PROHIBITED

Our newest blog author, Adrianne, joins us from Living with Arnold Chiari Malformation Type 1 and shares her motivating story And That's The Truth. 

Olivia Wilde portrays Heather beautifully in her inspired film One Day at a Time on her newly acquired .COM at Life with DisAbilities.




Alicia gives a moving performance as herself in her stirring film Under Pressure based off of her Chiari-Life.

Julia Roberts captures the essence of Shalunya in Laugh about Nothing.  Shalunya created an mock IMDb page to portray her poignant film on Shalunya Boyet.

Please enjoy your feature films and kindly leave a critique in their comment boxes!  

Notably absent this month are Misty from Day with Chiari, Maria from Arachnoid Cyst Support. Illnesses and hospitalizations have plagued Carolyn from Chiari Type One Malformation!, April from Zipperheads, Living with Arnold Chiari Malformation.  Kyle from Kyle's Chiari Malformation Battle suffered a devastating setup during what should have been a simple procedure. Please stop by their blogs to wish them well and let them know they are missed. 

Sneak Peek - Carnival #4

Summer 'Blog'buster Theme

Our topic will be "If my life were a movie."  Because Chiari is a rare disease, Chiari sufferers are always looking for an opportunity to share our challenges and experiences.  In May, we will examine the possibility of having our story play in movie theaters. Join us as we cast the actors, write the scripts and prepare our 'blog'busters for the big screen.  See you right back here on Opening Night,  Friday May 25th. 

Chiari Carnival now has a Facebook page please visit us at http://www.facebook.com/chiaricarnival and click like.

If you are a blog author and are interested in submitting a post for the monthly Chiari blog carnival please email shalunya@live.com.  

#3 - When It Rains, It Pours.

The rain began when life gave us these symptoms, this condition that we deal with.  Chiari rarely comes alone, so the additional raindrops come from a whole host of additional conditions.  So we Chiarians learn to become prepared.  We take great efforts in learning about the protective gear that modern medicine can offer us.  Medical procedures, medication and various therapies can become our raincoat, umbrella and galoshes helping us weather the storm that we have come to live in. 

Sometimes, though, in the midst of the storm life deals us more challenges.  Inevitably, we will come across people that will continue to add to our difficulties.  They will open the floodgates and begin pouring their complications upon us.  These people will be doctors, nurses, friends, family, teachers, bosses, coworkers and even strangers.  Often, they will be well meaning.  Such as a friend that asks, "You had surgery, so you're cured right?" But there can be times when it's downright frustrating when it's a member of the medical community.  We spend enough of our time explaining our rare condition but when we are given complete  and utter nonsense in return it can leave us feeling frustrated and alone.  This month we will tackle these difficult people (figuratively, not literally) and offer solutions on how to handle these charmers.

Carolyn reminds us when all else fails, teach people about Chiari and its symptoms over at Chiari Type One Malformation!

Kyle melts my heart when it rains, it pours being so brave about who differently he appears with his halo at Kyle's Chiari Malformation Battle

April celebrates being finally home after a lengthy battle in the hospital. Stop by Zipperheads: Living with Arnold Chiari Malformation and wish her well.

Maria tells us her experience with filtering friends in order to stay positive when dealing with chronic medical condition and difficult people on her blog at Arachnoid Cyst Support.

Misty gets one upped by those toppers and talks about anything you can do I can do better at her blog Day with Chiari.

Shalunya compares her condition to a Disney character in when it rains, it pours on her blog Life on Skype.

Bearly Burnt asks toughs questions in when it rains in pours over at chiari-life.blogspot.com