Saturday, September 8, 2012

#7 - How are you doing?

"How are you doing?" "How are you?" "How're you doing" Or in the famous words of Joey Tribbiani, "How YOU doin?"  No matter how one says it, it is a question that often gets overlooked. It's more of a greeting than a thought provoking question. So Carnival #7 is tackling this question.  We are delving deep to discover what secrets hide behind the standard answer, "I'm fine."

Alicia from Chiari-Life is Finally Answering Truthfully and she, also, shares the writing of Carolyn Gibbons on her blog post.

April from Zipperheads shares the hard truths about family life with Chiari in her post How Am I Doing.

Adrianne from Living with ACM1 shares her challenges when working and blogging at How Are You.

Carolyn Gibbons from Chiari Type 1 Malformation is welcomed back to the Carnival and shares her personal strength with us in her post One Day, I Will Be Fine.

Shalunya from Shalunya and Boyet asks us to not judge her based on her unspoken thoughts in her post How Are You.

Living with Chiari is challenging for those of us living with this disease.  There is no question about that but the question is how much do we share when being asked, "How are you?"  We walk a fine line between reassuring our loved ones and being honest about what we experience.  We don't want to be perceived as whiners, but sometimes getting through a day can be very difficult.  When we are completely honest about what we experience it can be overwhelming for our loved ones to hear.  We realize that those closest to us already sacrifice for us and we don't want to add any burdens to them.  But sometimes, finally answering truthfully is needed to reassure ourselves that we aren't crazy, to remind ourselves that negative thoughts are typical, to allow ourselves the freedom of speaking our minds, or to cleans ourselves of just a few of the challenges this condition can bring.

Since September is Chiari Awareness Month, we encourage all of our readers to spread awareness for our condition.  Tell at least one person per day, per week or even just one person this month about Arnold Chiari Malformation.  Use the hash tag of #ChiariAwareness as much as you possibly can this month on any form of social media.

And give yourself the freedom to answer this question honestly, "How are you doing?"  Please post your answers as comments below, on our Facebook page Chiari Carnival, or tweet your answer to @ChiariCarnival on Twitter.

Sunday, September 2, 2012

September is Chiari Awareness Month

A few states have proclaimed September to be Chiari Awareness Month.  In hopes of spreading awareness the Chiari Carnival would like to everyone with Chiari to answer 20 questions about their Chiari.   Post it on your Facebook, Blog, Tumblr or any where else you would like!  Feel free to link your posted answers in the comments below.

20 Things about my Chiari 

1. Diagnosed when?

2. Decompressed, if so when?

3. Other additional conditions, if so which ones?

4. Have you personally met someone else with Chiari?

5. Most challenging symptom(s)?

6. Most embarrassing Chiari moment?

7. Biggest Chiari frustratsions(s)?

8. Number of medications in your personal medicine cabinet?

9. Number of Doctors/Therapists stored in your phone?

10. Do you attend Dr appointments solo or with support?

11. Biggest regret that Chiari has created?

12. Biggest lesson that Chiari has taught?

13. Favorite non-medicinal therapy?

14. Worst medicinal side effect?

15. Biggest change in your life since diagnosis?

16. Worst medical test?

17. Hardest thing to give up because of Chiari?

18. Have you become more or less religious since diagnosis?

19. Where do you find enjoyment now, that you didn't before?

20. Favorite Chiari websites?

Tuesday, August 21, 2012

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.

Wednesday, August 1, 2012

#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.

Tuesday, July 3, 2012

#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 and we will feature them in an upcoming blog post.

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

Wednesday, June 6, 2012

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

Thursday, May 24, 2012

#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


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. 

Saturday, May 5, 2012

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 and click like.

If you are a blog author and are interested in submitting a post for the monthly Chiari blog carnival please email  

Thursday, April 26, 2012

#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

Sunday, March 25, 2012

#2 - Ides of Madness. Alternatives to breaking down, falling apart or cracking up.

The Ides of Madness keep marching,
And charging to bring our defeat.
Our sanity has now begun quaking,
Rationality has begun its retreat.

The Ides of Madness keep calling,
And eating our thoughts as fare.
Our clarity enticed by its lulling,
Good judgment soon will err. 

The Ides of Madness keep firing,
And lobbing rounds of our blight.
Our lucidity, once strong, is waning,
Sound reasoning is losing its fight.

The Ides of Madness keep charging,
And advancing in our own head. 
Our prudence is running for cover,
Clear perception trembling with dread.

The Ides of Madness keep attacking,
And assuring their will must prevail.
Our thoughts will need encouragement, 
Lest our humble insights will fail.

The Ides of Madness keep assaulting,
And assailing their delusion of mind.
Our vision now looking for weapons,
An arsenal of tactics we find. 

Most of us are familiar with that moment when we are at our wit's end, when we no longer know how or what to do, when we just wish life would go away.  It's a feeling we are all familiar with and we understand that overcoming that feeling can be challenging.  We here at the Chiari Carnival are tackling this tough subject and offering our thoughts on how to cope with these seemingly uncontrollable thoughts. 

Kyle and his Mom, Christy, share their thoughts on The Ides of Madness and offer support for coping with this difficult topic.

BearlyBurnt shares some promising thoughts for coping with The Ides of Mayhem.

At Life on Skype takes a look at Living with and Overcoming Maddening Thoughts.

Go Crazy? Don't Mind if I Do! says Misty over at Day with Chiari

Wednesday, February 29, 2012

#1 - Rare Disease Day

Hi All, 

Welcome to the first Chiari (kee-AR-ee) Blog Carnival celebrating Rare Disease Day! Since Arnold Chiari Malformation is listed as a rare disease, we felt it appropriate to celebrate by hosting our first blog carnival.  

When one is given a diagnosis of cancer, diabetes, asthma, arthritis, heart disease, HIV or a host of other conditions they can readily find others willing to lend encouragement or support.  They can find medical professionals locally who are well versed in their ailment.  Those of us with rare conditions often find ourselves teaching the medical professional about our condition.  We can't always rely on the medical community to know, instantaneously, what treatment options are available to us.  We know that our condition isn't necessarily any worse than these other conditions.  We just want others to understand our condition, to realize that it is frustrating to have explain our condition and that we can often feel alone or neglected.  We don't get to wear a ribbon and have people understand what we suffer from.  Even after we explain it we are often met with empty or confused looks.  Sometimes, we can even feel like lab rats when doctors or specialists hover over us.   

A diagnosis of Chiari is lifelong. It becomes a battle of symptom management. A trial and error of medication and treatments.  Typically, we battle a host of other diagnoses and, frequently, depression is a challenge that we will face. We will never be big enough to start a revolution; but, we are starting to find our voice.  It's a voice of strength, of heartache, of determination and of pain. Luckily, we are starting to find our place.  

We want to tell you our stories.  We want you to listen to us.  Not pity us.  Please feel free to ask us questions.  We want you to understand and we know just how confusing it is.  When we talk about the struggles and the pain, we don't expect you to feel bad for us.  We just want to know you care.  Sometimes, just maybe, we don't even know what to do with ourselves; but, having someone we know we can rely on keeps us going.  It keeps us trying for a better tomorrow.

We would like to kindly ask you to take some time and read the following blogs.  Get to know who we are and what living with this condition is really like.  Join us on our journey every month here at the Chiari Blog Carnival.

April, mother of 2, talks candidly about her diagnosis in her post 1st Annual Chiari Carnival on her blog Zipperheads: Living with Arnold Chiari Malformation.

At Life on Skype, Renee (a.k.a. Shalunya) shares her colorful pre-surgical decision with us at My Rare Disease.

Carolyn, one of the chosen few with Chiari, asks of if we are Jealous of her Rare Disease over at Chiari type 1 Malformation!

Twelve year old Kyle provides a great perspective on Living with a Rare Disease on his blog Kyle's Chiari Malformation Battle.

In Rare Form new blogger, Heather, talks about her Life with DisAbilities for our first Chiari Blog Carnival.

Misty gives a great Refresher Course on the challenges of living with this condition on her blog Day with Chiari.

At Chiari Life, Alicia (a.k.a. BearlyBurnt) helps us celebrate Rare Disease Day by reminding us to keep moving forward.

Thank you so much for sharing your time, broadening your understanding and opening your heart to us.  Each patient and family that suffers with this rare condition appreciates it deeply.

Wednesday, February 22, 2012

So what is a blog carnival?

If you have arrived at this blog you are probably a fellow Chiarian interested in joining us for a blog carnival.  So, you are asking yourself, “What is a blog carnival? How do I participate?'”  A blog carnival is a circle of bloggers that write on a specific topic once a month.  Blog authors participate by writing a blog post about the specific topic and publish their post on the same day.  Then an article is written about all the blog posts and that article is published anywhere online that will allow us an opportunity to post.  My goal as blog carnival ringmaster will be to select the topic (I am ALWAYS open to suggestions), coordinate the publish date, write the main article to include links to all the participating blog posts, and keep the momentum going each month. Our first ever carnival will be held on Rare Disease Day, February 29, 2012.  My first goal is to see if it is possible to have our article posted on websites that could provide us with some level of visibility to other fellow Chiarians.  

Each one of us knows how frustrating it can be to live with Chiari.  We also know that it can feel very lonely when you have a rare, chronic condition.  We all have those moments when we feel like no one understands and that we are all alone when fighting this condition. This is our opportunity to unite and to stand together with a clear voice saying “We are here and we have Chiari.”

If you would like an opportunity to see just how a blog carnival works check out these great examples. Jenni over at produces a great monthly carnival.  This months topic You are loved! ChronicBabes! is devoted to the special people that support women with that suffer from chronic illness.  The Writing Reader hosts their Carnival of Creativity promoting creative writing and writer.  The Math Hombre produces Math Teachers at Play blog carnival which is a great resource for teachers of math, of course. :)

I would love to have great participation for the first Chiari Blog Carnival. It doesn’t matter if you are a seasoned blogger or brand new, you have a valuable voice and we would love to include your post.  If you are interested please email me at or comment below. An email will be sent to you regarding the specifications for participating in the carnival.  Carnival posts must be published to your own blog by noon EST on February 28, 2012. 

Sunday, February 19, 2012

Rare Disease Day

Please join us for the kick off of the Chiari Carnival on February 29, 2012, Rare Disease Day. Since Arnold Chiari Malformation is a rare disease, we could think of no better day to kick off our carnival. For more information please visit Rare Disease Day.  

You might be wondering what a blog carnival is and what is all the fuss about. Well, join us February 29, 2012 to find out.  If you or someone you love has been affected by Chiari or any other rare disease this carnival is for you.  Each month we will discuss new suggestions for living well with a challenging disease. Come back and join us for the first Chiari Carnival! 


Welcome To Chiari Carnival, a community of bloggers who discuss the challenges of living with Arnold Chiari Malformation.  Here at Chiari Carnival, we want to broaden the understanding of Chiari and to support those affected by this rare condition. Our goal is to unite our community of bloggers for a specified topic of discussion once a month. If you are a blogger living with Chiari or supporting someone with Chiari please feel free to join us in our focused discussion of "My Rare Disease."  Please leave your email in a comment below or send an email to If you aren't a blogger then please join our Chiari Carnival by reading and commenting on the blogs participating in the monthly focused discussion.