Tuesday, March 26, 2013

Sad Ending to a New Beginning

It is with regret that I have come to the decision to completely discontinue the Chiari Carnival.  I will leave the existing posts up in hopes that they may help others who suffer with this very complex condition. 

The Chiari Carnival Facebook page is changing to the Chronic Chiari Facebook page and will link to blogs posting about Chiari or other articles about Chiari. Please 'like' the Chronic Chiari Facebook page to receive updates from several Chiari bloggers. If you are a blogger and are interesting in having your blog featured on Chronic Chiari please message the Chronic Chiari Facebook page.

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 shalunya@live.com 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 shalunya@live.com.