Extra! Extra!

Great news!

Sometime last week I was on Twitter and on the spur of the moment, I thought what the hell, I'll tweet The Evening Sun, my local newspaper. Here's how it went down...

 

I tweeted TES and said "September is Chiari Malformation Awareness Month! Interested in doing a story?" They replied that they forwarded the message to their reporter, Tim Stonesifer, and that we should connect on a possible story. I said thanks I will contact him. He actually conacted me first, through Twitter. He replied to the tweet "Can we talk sometime this week? What's your interest in this condition?" and gave me his contact information. I then sent him an email with some information. We set up a time to have an interview and on Tuesday, Sept 11th. He and a photographer showed up at my house for the interview. The interview went on for about 45 mins to an hour. I was so worried that I would forget to mention everything that needed to get said. This was my chance to get the word out in this area.

When Tuesday came...I prepared myself by having my laptop out with some websites up on Chiari, along with some folders full of info. (I have several purple folders with Chiari info I've collected over the years, as well as my own info and MRI results) I did my best and told all that I could. I forgot so much and yet said so much. I realize if I were to say everything that could be said, it could probably fill the entire newspaper. He said he'd let me know when the article would be out and thanked me for contacting them.

 

The article appeared online Sept 13th. I was so excited. I was at work when I found out. The next day I hit up my local Rutters, and low and behold...my face was on the front page!!

 

Coco and I - Front Page - The Evening Sun

After all of the rambling above...here is the article! Please read and then share! :)
Living with the Pain

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Finally Answering Truthfully

Chiari Carnival #7 Topic: How are you doing?
Theme: Finally answering truthfully. 

The truth.Well...the truth is at this very moment I am fine. Not just the "fine" standard answer given to anyone in passing. Though it is true that "fine" is given a lot when I am truely not fine at all. It is just easier to say then to explain.

• On any given day I am in pain. I would say 98% of the time my head and neck are in pain. It may not be excrutiating, but it is very annoying. It has become second nature to me. It is a background pain. There is this constant achy feeling at the base of my skull (actually there isn't much skull there at all anymore since decompression surgery) It feels like a constant hangover. Imagine walking around with a hangover 24/7. That may be a good way to describe the "regular" day to day head pain. Loud sounds make me cringe. Some sounds more than others. Lights hurt bad. 
• To continue on my day to day pain and issues....I have muscle weakness/get burning sensations. When I am in the shower my arms begin to hurt from washing my hair.
• Several times a day my arms, legs, hands, feet, and random body parts will get tingly and numb. I have had my lip, eyebrow, thigh, butt, and girly parts go numb at random.
• Balance...it's bad. I can laugh at this though until it hurts. I fall upstairs, downstairs, into stuff, onto stuff, sideways, leftways, etc. I can't walk straight.
• Depth Perception...Walking into walls, doorways, missing stairs, into people, things, etc. I can literally see that I'm walking into a door way and somehow end up walking into the door frame. Completely missing the giant hole to walk through. That is my most common problem. I have to watch the floor when I walk because I miss steps, therefore I fall.
• Dizzy/Lightheaded-vertigo....I can't move too quickly any which way or I'll get either. You know the staircases that go in circles? Yeah not good. And how about hotel (or any other establishment that have elevators also) staircases...that go up and around, up and around, up and around....makes me want to vomit.
• Difficulty swallowing. Yes this does happen. I really need to chew my food better.
• Ringing in the ears/Tinnitus...ANNOYING. every once in awhile my ear will start ringing so bad I can't hear out of it. Or it will just shut out sound. Not pop like when you're sick...just stop hearing.
• Fatigue
• Slurred/Tangled speech. I get this way too often. Especially at work. I trip over my words all the time. Sometimes I just start repeating the same word over and over again and can't stop myself. "...would would would..." before I can actually get myself to stop and get out the next word.

Now that I've run through a list of symptoms...haha
There are plenty more but those are what I experience the most on a daily basis. Sounds rough right? You don't physically see this stuff. You might see me walk into a wall. Ha Ha...ok its funny. But 30 times a day. (I may be exaggerating) and it's not just being clumsy. It sucks. The head pain sucks.
I honestly hate not being able to do normal things. This is my normal. I have adapted to my own normal. I don't drink alcohol much if any due to the head pain already. I don't need more pain on top of it. I'd love to relax and have a good time. When I start to...my head kicks in and says "alright thats enough...you're doing way too much" God forbid I laugh too much, I cough or sneeze too hard, or any form of strain.
Some days the headpain is real bad. So bad to the point of vomitting. My ice pack is my best friend. If I freeze it til I can't feel it...it helps a litte. Those days, its really hard to function, but I still do to the best of my ability. If I have to work I will go to work. I will put on a fake smile and act like I'm ok. I will be cheery as hell while inside my head is screaming and pounding. Those are the days that seem to take forever too of course.

"Smiling doesn't always mean you're happy...sometimes it simply means that you are a strong person."

Above is the truth.
It is 1:45 AM. I am working night audit. I will be at work until 7am. Currently my head is ok. Just ok. My feet are tingly. My neck is stiff.

And as this is apart of how I truthfully feel and every other Chiarian out there...here is the best thing I've ever read:

Written by Carolyn Gibbons

"My name is Chiari and I am an invisible chronic illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause your hea...

d to explode and your vision to dim.

Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Try to have fun now! I also took Sleep from you and in its place gave you Brain Fog - Confusion and Disorientation.

I can make you dizzy and sick; fill your ears with constant noise and a whole host of other things that no one else believes. Oh yeah, I can make you feel anxious or depressed too.

If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons and I'm here to stay!

I hear you're going to see a doctor who can't get rid of me; I'm rolling on the floor laughing - tell him to keep trying! You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, told you are suffering from anxiety or depression, given pills that make you tingle, stuck with needles, scanned, and when they get really desperate they'll drill holes in your head.

You'll be told to think positive while being poked, prodded, and investigated by medical students, and MOST OF ALL not taken as seriously as you feel when you cry to the doctor how depressing life is everyday.

Your family, friends and co-workers will listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you are just having a bad day" or "Well, remember you can't do the things you used to 20 years ago".

Some will talk behind your back while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a person, and can't remember what you were going to say next!

In closing (I hope to keep this part secret) I guess you already found out…the only place you can get any support and understanding in dealing with me is with other people with Chiari."

 

September is Chiari Awareness Month. I am doing my part by posting everything I can on twitter, facebook, tumblr, pinterest, stumbleupon. Please help and do your part! It only takes a few seconds to share. Don't forget to LIKE Chiari-Life on facebook! Follow on Twitter @BearlyBurnt

Copy and Paste....Share on Twitter:
Trend #Chiari Malformation Awareness on twitter! #Chiari#Chiari#Chiari#Chiari#Chiari#Chiari#Chiari#Chiari#Chiari#Chiari#Chiari#Chiari RT

Head over to the next blog in the Carnival

Brave

I'm a Disney fan. Ok so I'm not just a fan. I love Disney. I'm obsessed...
I follow every Disney thing on twitter...I like all of the Disney facebook pages. My room is decorated in Disney...My dream job would be to work for Disney... you get the picture. (Wow did I say Disney enough?)

Anyways...I get the Disney Insider newsletter in my email. If you don't know there is a new movie coming out called Brave. It is featured and they have an option to "Share your Brave Story". What better way to spread awareness than telling your story to Disney.

I shared my Brave story.
Here it is: Alicia - Brain Surgery 
Please click the link and read. After you've read it...click "LIKE" and help this story get Featured!

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On another note...The Unite @ Nite walk is coming up. I will be walking June 16th with some family and friends for the Chiari & Syringomyelia Foundation! There is still time to register to walk, donate, and sponsor Team Chiari-Life Click HERE to do so:)

Also, my sister, Karen has made several awareness items which are being sold in her etsy shop. Stop over and check them out! Profits go towards the walk! Designs By Dayzi


Until next time...<3

Ides of Mayhem

Chiari Blog Carnival #2 - Ides of Mayhem
Topic: Alternatives to breaking down, falling apart or cracking up. 

Hmmm Alternatives to breaking down, falling apart, or cracking up....
I'm having a blank and don't know where to start.
Sometimes you just have to break down, as with any other situation, you can't hold in all your frustration and confusion. You can't hold in your tears. The longer you hold something in, the harder it will be when it all comes out. We are strong. We hold a lot in. Finding other Chiarians to confide in is a great way to release a lot of the frustration you may not be able to get out around others who don't quite understand.

When I have a bad Chiari day...thats when I want to break down, I want to cry and fall apart. I want to scream and yell "WHY ME?!" I want to break stuff, punch things, and go into hysterics for someone to understand what I'm going through. Why can't I have a normal life? Why can't I go out anytime I want? Why do I have to lay around and be miserable?

There are days I have to keep it together when I want to break down. I have to keep it together to go to work. I work in customer service so I have no choice but to put on a happy face. I have to keep moving forward.

On my good Chiari days...well I want to do everything. I want to get out all that couldn't be done on the bad days. But on the other hand I can't over strain myself. That will cause a bad day. I can't over exert myself...again will cause a bad day. Hell...I could sneeze or cough too hard..there goes my day. There is also the lack of energy I have that keeps me from doing a lot. The fatigue I get.
The good days give me inspiration to keep going. It helps me to help others in the same situation. Despite the bad days there will be a good day here and there. The only thing we can do is make the most of it.

For example: Last weekend... St. Patricks Day. All the women in my family on my moms side go down to OCMD for our Girls Weekend same time every year. Friday totally kicked me in the ass. Not only did I not drink any alcohol...(Carded for a DIET COKE....side note there.) and started off fine...had to leave the bar early because Chiari kicked in and said FU you're not having a good time tonight. It was nice out most of the day and a bit rainy at night.
Saturday all day was great..my head was good to me. We all went out to the parade, to the boardwalk, to dinner and then to the Sandbar as usual. By this time my head was still being good to me. Again decided no alcohol...my head was being good I didn't want to chance it. Diet coke and water all night. Successful head day. It was misty and chilly all day. You can't predict it.

Cracking up.. I'm not sure how to take this one...it could mean a lot of different things.
Going crazy? Insane? Oh yeah that happens... The pain, frustration, confusion...all of it will drive you mad. What you need is support. You need other people going through the same thing to vent it all out. I have that. www.chiarisupport.org is a place I found and it is growing!
I also have Joe. He makes me laugh. This is the cracking up in a different sense. He helps me laugh at the weird things I do. Chiari comes with a lot of off the wall symptoms. Walking into walls...yeah my depth perception isn't great at all. Speech is messed up. I slur or repeat words over and over. I don't feel insulted when Joe laughs at it.
There are others that don't understand or won't take the time to understand.

I read. Harry Potter is my addiction. Disney is an obsession. I will get lost in books or animation and forget about the world. Thats my alternative.

But how do you handle living with Chiari, wanting to break down, fall apart and crack up when you can't escape? You do all three. Just make sure you have someone there to pick you back up. Don't fall over the edge. You need to know you are strong! If we couldn't handle it...we wouldn't have been given this life to fight for. There are others out there going through much worse.

You can find more Chiari blogs on this topic at the Chiari Carnival
Don't forget to LIKE Chiari-Life on Facebook! Click the link on the Right or click HERE
Lets get Chiari trending on Twitter! Tweet #Chiari on all your posts!

Java Monster

So Chiari-Life has a facebook page. Help spread awareness by sharing the link and sharing your story on the page! You can "Like" the Chiari-Life facebook page by clicking "Like" on the right side column or by going to http://www.facebook.com/MyChiariLife
I will try to keep that page updated with Daily Chiari Facts, Stories, Resources, etc.
As I said above, feel free to share your story on the wall, your advice, your questions, thoughts, or anything you'd like (Chiari related obviously)

Now to Reference my Dixie Doodle post...the asap.org newsletter came in and here it is:
ASAP Winter 2011/2012 Issue Check out page 6. (Read the rest of the issue too, some good stuff!)

I have been finding a lot of chiarians on Twitter lately. If you're on twitter, follow me @BearlyBurnt and mention my blog so I know how you found me. Lets get #Chiari trending!
Post this on Twitter:
"Trend #Chiari Malformation Awareness! #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari RT"

I'm out of things to post so good day to you:)

Rockin' the Purple in my car!

(Couldn't think of a title so I went with the drink I'm currently drinking. Loca Moca Java Monster.)

Chiari Awareness Month

September is Chiari Malformation Awareness Month.

What can you do to help support and spread awareness for those with Chiari Malformation?
It's very simple:
Ask us about it.
Take the time to learn.
Share a link on your facebook/twitter etc.
Tell someone else about it.
Go to a Chiari Walk.
Wear Purple this month especially.
(Join the facebook event and share it! That helps too!)

Chiari Malformation is almost as common as Multiple Sclerosis (MS). You've at least heard of MS before haven't you? You may not know what it is...but you've heard of it. Chiari is so misdiagnosed that its name is not out there as is MS. About 1 in 1,000 people have Chiari. It affects more than 300,000 people in the U.S.

September 17th there will be Chiari Walks held all over. Below in a previous post are some links with various site locations posted.
This is for Wyomissing, Pa:
Chiari Walk for Wishes & Rainbows

These sites have walk sites listed.
ASAP
Conquer Chiari

This is me, wearing purple. And yes. I'm with some True Blood cast :)

I want to see your Purple Chiari Support! Post it here, twitter, facebook.

If you're on Twitter...lets get #Chiari trending for September!!

Copy/Paste this then post on twitter!

Or Follor me and RT @BearlyBurnt

"Trend #Chiari Malformation Awareness! #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari RT"