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.)

Words

Chiari in words:

CHIARI

Life

Friend

Help

PAIN

Understanding

Alone

Helpless

Stress

Confusion

Headache

Disorder

SUPPORT

Numb

Damage

Surgery

Decompression

Research

Invisible

Reality

Recovery

Symptoms

Awareness

Fear

Anxiety

Purple

Survive

Dizzy

Burning

Pressure

Balance

Restriction

Tension

Sensitivity

STRENGTH

Straining

Loss

Swollen

Vomiting

Insomnia

Endurance

Community

Syringomyelia

Struggle

Different

Spoonie

Frustration

Conquer

Diagnosis

Scared

Hopeless

Brain

Heal

Tolerance

Learning

Adjustments

Change

Coping

It is not just a headache.

Yesterday I had one of my bad Chiari days. I woke up with this pressure pain all over my head. It felt like someone was blowing up a balloon inside my head. The balloon was continually being blown up with nowhere to go and not popping. (Really hard to explain the pain.)
It felt like my blood vessels were going to explode. It was a throbbing pressure that went from the back of my head/neck all the way up through to my eyes. As if someone was taking an icepick to my skull.
I don't get these often anymore. (Thank God!) It lasted all day. A few ice packs and aspirin later...pain level lowered. So I didn't call off work; I knew it was a slow day. I got off work and the pain level went right back up. It was a miserable trying to fall asleep. More aspirin and ice packs. Finally fell asleep. Woke up at 4 AM and it was finally gone (as good as gone anyways).

This came out of nowhere. If only there was a way to predict when these days were going to come up...I'd be able to prepare myself. (Not that it would necessarily help)
I hate that when you say headache it comes with the assumption that it can all be taken care of with some tylenol. A headache? Oh ok that's nothing. It's not just a headache. I want to punch the person who gives me that reply. You don't understand what I'm feeling. You do not understand my pain. You do not take the time to listen to me tell you. Why do you ask me how I am in the first place if you really don't want to know the answer? Frustration.
Anyways...I have always had a hard time describing my head pain. Its a weird pain. What do you do when you are explaining it to someone else?
All chiarians out there... I'd like you to post here with your description of your worst Chiari "Headache"
Don't hold back on your description. What does it feel like when you are having a bad Chiari day?


Oh and Happy Friday the 13th!
In honor of Friday 13th ScaresThatCare is having their $5.00 Donation Day. Click their name to help out sick kids and a chance to win some cool prizes! Learn More Here

My sisters blog on Photography & Modeling :Model Eliza Jayne

Dixie Doodle

I want to wish everyone a very Merry Christmas! I hope you all have a wonderful holiday spent with family and friends!

I'd like to send out a HUGE thank you to my friend Dixie, Lord Dixies Blog. For Christmas, he made a donation in my name to American Chiari and Syringomyelia Alliance Project for Chiari research.



Buddy and Coco ready for Santa!

I don't have too much to say on Chiari today. Luckily *knocksonwood* I haven't had too many Chiari headaches lately. They have been minimal.

So as I don't have much to say on the matter, I'd like to tell you about our new "son". Joe got a Blue-tongued Skink. His name is Toothless (after the movie How to Train Your Dragon and because he doesn't have any teeth.)


Joe and Toothless

 

Me and Toothless
Of all places...he loves my neck, shoulders, and head.

 I'm not super religious though I am a Christian. As it is Christmas time I saw this and thought this fit well. (Fits for anytime really.)

A Chiari and Syringo Prayer

"I ask the Lord to help me, to guide me thru the day,
I ask the Lord to give me strength, to help me on my way.
I ask the Lord to help me thru, the pain I do endure,
To help me bear my burdens, and keep my weak heart pure.
I do not ask "Why me Lord"? for surely there's a plan,
For me and other's like me, even if we don't understand.
I said "Chiari and Syringo, Lord, have given so much pain,
Have taken so much from me Lord , that I can not regain".
And then a voice within my heart, said, "Look at what you have,
An old life gone forevermore, with so much more to gain".
"For a new life opened to you, Love, Comfort and true Friends".
"All understanding of your pain, and with you to the end".
I really thought about this then, and felt my weak heart grow,
For the Lord has Blessed me greatly, with something so many will never know.
A new life opened up to me, new Family, Friends, and Love,
To share my life completely, sending Prayer's, Comfort, Understanding,
And true Love.
And then I said "Thank You Lord, for all you've given me,
For every pain I suffer Lord, you've sent a friend to me.
For every cross I have to bear, I never bear alone,
Because, friend's help me carry it, however far, or long.
Be with us all, and guide us Lord, as we journey thru this day,
Give us strength to be there for each other, in each and every way".
"Thank You Lord" By: Debi Risher



Fracture

Shorty post!

Oct 29th, 2011...we had some weird snowfall. I walked out the front door and down I went. I fractured my ankle. I was off work for 3 weeks. During that time my computer decided it didn't want to work.

There you have it. My giant foot/ankle. Luckily it has gone down in size. I have a follow up thursday to make sure all is healing well etc.
I'm back to work (there now) so I thought I'd add an update.

Hope you all had a wonderful Thanksgiving!!

Back to work I go.

Walk Totals 2011

Congratulations to all those who participated in the Chiari Walks all over! I'd also like to say thank you to any who donated their time, money, effort, and support!

Walk totals:

Conquer Chiari Walk Across America Sites raised over $380,000!! There were 5,500 + walkers who joined in at walk sites all over. (info taken fromt their site)
That is AMAZING!

American Syringomyelia & Chiari Alliance Project have walks continuing throughout the year.

ChiariPeople of Pa had their Walk on September 17th for Wishes and Rainbows. They raised $3,100!!
http://readingeagle.com/article.aspx?id=333170
Article above from the local newspaper ^

Indiana Northwest raised $27,000 with 300 walkers!!
Courtesy of my friend Carla Stone.

Notebook/Journal

Have you ever heard of a headache or migraine journal/notebook? Basically its to keep track of when you get them, what you did before and after, what you ate etc. It is to help figure out if there is a common trigger or something in your daily habits that may cause them.

It's been suggested that I keep one. Chiarians especially, I think should keep one. Not only on just the head pain, I think the other symptoms (along with those really odd ones) should be noted.

Here is a Chiari Journal Entry from

September 28th, 2011

"I'm at work. I started getting dizzy, lightheaded, seeing spots when I move my head, and cold sweats. I feel like I could faint. I started feeling like this around 4pm. (I wasn't feeling too great when I got up either but nothing similar to the above) It was about 78 degrees outside and humid. Inside work was hot too. I turned the a/c and fan on. I also grabbed a cold rag and wrapped it around my neck. It's 6:45pm now. I still feel all of the above, only less cold sweats.
The only thing I've eaten today so far was crackers - I don't know that they helped any. I feel like either my blood sugar is super low (I am not diabetic) or my blood pressure is very low (what would make it drop like that, esp when I have good bp). I've had caffeine and sugar.

September 29, 2011

This lasted until around 1-1:30 am about 9.5 hours. Today I had the dizziness and headpain with a fever off and on.

Basically that is the sort of thing to record. What things you're feeling, what you were doing, what you ate etc. I don't know if what went on was Chiari related. It's hard to tell. I'm practically dizzy or lightheaded daily.
But you get the gist. I haven't done this long enough to see if it helps any. It may help with regular headaches.
So as it is the month for Halloween... I think the blog is in need of decoration.

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"

Post-Op Anniversary

No funny stories in this post.
Today is my 8 year post-op anniversary.
8 years ago today I had decompression surgery.
8 years ago today I had brain surgery.
I can't believe it's been that long already.

Surgery was scheduled for July 25^th, 2003 at York Hospital. Dr. Schlegel and Dr. Winer performed the surgery. I was told afterwards that it was good they got in there when they did because the base of my skull was eggshell thin. I was in ICU (Intensive Care Unit) for a little while recovering. The pain after surgery felt much worse than before. It felt like my brain was trying to push out from every opening it could find. There were constant ‘explosions’ of pain going off inside my head. I was constantly puking from the pain. I couldn’t keep any food down. I was ‘eating’ ice-chips. The pain medicine they gave me didn’t seem to help. I hardly slept. My mom stayed with me every night because I didn’t want to be alone. I was finally moved to a regular room but unfortunately, I was put on the pediatric ward. There was always some kid crying or screaming, that didn’t help. All I wanted was to go home. They wouldn’t let me leave until I was able to get food down and keep it down. I also need to get up and walk around daily. My walks around the nurses’ station were blurry. I couldn’t see (because I wear contacts/glasses and didn’t have them because I was in too much pain to bother) and was very dizzy. I was in the hospital for a week. I was finally able to go home when I kept some food down. Dr. Schlegel sent me home with Percocet for pain; which did not help at all. We hardly made it half way home before I started vomiting again. Every bump and turn was murder. The following week I had a follow-up MRI and visit with Dr. Schlegel. I was still having trouble keeping food down. Mom bought something like Pedialyte and I was at least able to drink that for some kind of nutrition. I still couldn’t sleep and the pain was not getting any better. Dr. Schlegel prescribed a different medicine for pain and to help me sleep. After taking that (I do not remember what it was) the pain started to subside and I was finally able to get sleep. I was beginning to keep food down. It took about 4 weeks to recover to my somewhat normal self. Quoted from A Real Horror/My Story

I'm not sure how long surgery lasted. I believe it was about 5+ hours.

I'm going to jump around. I should really talk about diagnosis and how its found (other than generalizing and saying MRI) but as its my Surgerversary (like that term? just made it up.) I figure I should talk a bit about the procedure.

I'm going to try and address the following questions: (Answers are based on my personal experience as well as from other sites.)

How do you know if you should have surgery?

What happens exactly during decompression surgery?
Will this cure/fix my Chiari?
How long does it take to recover?

• How do you know if you should have surgery?Your NS will tell you his/her opinions and resoning for surgery. The more complicated your symptoms are, the more likely they are to recommend surgery. There isn't one specific reason to give the automatic yes on surgery. Depending on the severity of the symptoms and the doctor. If you feel your pain is too much and your not getting the right help/treatment...the best bet is to get a second opinion.
• What happens exactly during decompression surgery?The goal of the surgery is to create more space around the cerebellar tonsils and restore the normal flow of CSF.  The procedure involves removing a piece of the skull in the back of the head near the bottom (craniectomy).  Often part of the top one or two vertebra are also removed (laminectomy).  At this point, depending on the individual case and doctor, some doctors will also open the covering of the brain, the dura, and sew a patch in to make it larger (duraplasty).  There are many variations in how the surgery is performed, including (but not limited to) how much bone to remove, whether to open the dura, what type of material to use for a dural patch, whether to shrink or remove the cerebellar tonsils, and whether to replace the missing piece of skull with anything.  Unfortunately, there is no consensus, and no strong evidence, on which technique(s) is the best.  Because of this, it is important for patients to understand specifically what their surgeon will be doing and why.  The procedure itself lasts several hours and most people will spend a night in the ICU and an additional couple of days in the hospital. (Taken from ConquerChiari)
• Will this cure/fix my Chiari?
  This is not a cure. You should no that surgery is a form of treatment for Chiari and not a cure. It is a way to alleviate pressure from the cerebellar tonsils on the skull. It can help relieve you of pain and symptoms. It is not a guarentee that you will be symptom free. (didn't try to rhyme.)
• How long does it take to recover?As with most anything else...everyone is different. Everyone will have different recovery time. Hosptial time may be a few days to a week. After that it could take a few weeks to a few months to fully recover.

A really good site with some info on all of this is Precision Neurosurgery  along with the Conquer Chiari link above!
Well it is time for me to get off for now!
Comment, Share the blog, Help Spread Awareness!
Thanks for reading:)
-Alicia

Oh before I forget...another link: Conquer Chiari PP Presentation: Treatment as the link says...its a powerpoint presentation on treatment. It is in PDF format. Great read and easy to understand!

A Dose of Reality

Chiari moment of the week:
Last weekend we had a divorce party/pub crawl for my sister. So we were in the car on our way to Fells Point. We had to stop for gas. After I was done pumping/paying etc..I went to pull away and I stuck my hand through the steering wheel to reset the trip counter...the other hand was turning the wheel. Bad idea. I got the one arm stuck in the wheel and had to stop in the middle of Rutter's parking lot. I'm screaming "I'M STUCK I'M STUCK!!" I couldn't get my arm out. It didn't click that I needed to turn the wheel back the other way to get my arm out. Haha apparently my left and right sides were not communicating. Otherwise I wouldn't have turned the wheel while the other was still in it...

Chiari & alcohol...they don't mix well. It's like an instant hangover. It sometimes sucks being 23 years old and can't drink a few drinks without getting headpain right away. If I do drink, I drink slow. I get told to drink up, chug it...etc Yeah..uh NOT happening. I finally know that I'm not the only chiarian who experiences this. I'd like to try and research this more. So there may be more on this subject.