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. 

There you'll be.

I've done it again. Another month has gone by. I don't know how I manage it. There must be some kind of sensor in my head that tells me its been a month that I need to post. I'm not sure why that sensor doesn't tell me to post more often.

Happy Mother's Day to all the Mom's out there!! Especially my mom! I love you!!

Happy Birthday to my muscle man, John! Rest in Peace! I Love you and I miss you so much!!! 05/03/49-05/08/09

Shorty

Hey all!
This will be a short post as I am really exhausted from work.

I was featured in the BensFriends April Newsletter

April Newsletter - Click Me

Yay me! :)
BensFriends provides support sites for rare diseases/disorders. Includuing Chiari Malformation.
I am a member of chiarisupport.org There is a link on the right as well :)

Chiari Walks - September 17th, 2011

ConquerChiari
ASAP

Both sites above have walk sites listed in registered states.
The ChiariPeople of Pa will be doing their walk again, this year their funds will go to Wishes and Rainbows
They are a non-profit organization for those with Chiari Malformation and Syringomyelia.


I hope to get on VERY soon and post. I have much to say.
With that I say goodnight.
-Alicia

Ooo purple-y

It is officially the first day of Spring tomorrow!!

These sprung up the other day in the front yard. Because they are purple...the Chiari awareness color...I shall dub these Chiari flowers. For now; until I find other purple ones...lol

I've been trying to think on topics for the blog. I've realized that the more time I spend on thinking about topics..I'm not actually doing any blogging. I've got ideas on things I'd like to write about written on scrap paper everywhere throughout my room, in my purse, on my desk etc.

The one thing with Chiarians is our great memories. I could have a great idea...if I don't write it down..its more than likely I will forget it almost instantly. That usually happens when I'm doing something else. So I write everything down. 9/10 times I have the same great ideas lol. On my day off work, I may go through all the scrap notes and I realize I have about 5 of the same notes/ideas written down. So then I organize my chaotic scraps....into one big list for that week (or whatever the time frame of my cleaning is) and start all over again. I have a few notebooks with ideas written in them. I went as far as organizing separate notebooks for different topics...I have one for crafting/creativeness, a Chiari related notebook, and a general because most of my ideas fit into the first two. I like to call it Chaotic Organization. What do you think?

Maybe not chiari related but oh well...I have decided to quit smoking. I started last monday. I've had about 2 a day since. Thats not bad at all. My mood has been different. I've felt hyper and in higher spirits. I'm hoping this all helps me. The nicer weather...maybe I can get myself outside more. I'd love to spend as much time in sun as I can. I want to start taking Coco for walks. I want to get myself back into shape.

Exercise can be hard on someone with Chiari. You have to weigh your options with what you can and cannot do. First you need to know your own limitations. Do not over strain yourself. One of the #1 causes for Chiari pain is straining yourself (couging, sneezing, stretching, etc) even if mild. Walking is one of the best ways. If you know you can do more, than do it! Just don't over do it.

I want to spring clean my room. Maybe re-paint the walls. I wanted to paint last year but didn't have the money. I really don't this year either...so it'll depend. Here is another don't over do it...another thing that sucks...you really have to take your time doing things. Sometimes I get into OCD cleaning mode (a lot when it comes to my stuff) and I can't help myself...I start going at it like crazy. I have to make myself stop and take a break because I can and will over exert myself. If I do I will pay for it badly.

A repeat of another post....for anyone looking for a support site...Chiari Support go there...it is a great place to meet other Chiarians...get support, get answers and help. Its a big Chiari Family!

Also...here is something I got from the support site. If an ice pack or heat wrap helps with your pain..try this if you do not have one.

Rice Bag
You will need:

• cloth, soft, like flannel, cut 5" wide by 12" long

• 1 Large bag of rice (buy from the dollar store) its cheeper

• thread to match material

Directions:

Sew 3 sides, turn the bag inside out, then fill with rice, but leave about some room to sew the top by your sewing machine (or by hand), then turn the edges inside the bag for a nice hem, sew together, and that is how you make it.  It freezes as well as put into the microwave for heat.

Other ways of making a Rice Bag:
Another option
And more

I'm going to make one and I'll post pictures :)

-Alicia

Ice is slippery...

A very quick post.

I want to share a link with everyone. I stumbled on this chiari support forum while I was googling topics for the blog. Click it and check it out! I also have a link on the right side that will take you to my page on the forum. 
Chiari Support

Hope everyone is staying safe with the crazy weather out there! Watch out for that ice! I nearly got knocked out the other day in my boyfriends driveway. I could've either went backwards and cracked my head and back on the hood of my car or face-planted the concrete in front. Somehow I slid myself to the side of the garage and kept myself up. That was hard to do, considering my balance isn't too great off the ice.

Bye for now!




Snow/Ice Covered trees at work. 1/26/11

Front of work covered in snow and ice. 1/26/11

 

The New Year...

Happy New Year!!

I'd like to compile a list of support groups. If you know of any please post them in a comment or contact me with the information please.

I'm from Pennsylvania. The local support group here is called ChiariPeople of PA

I don't have much today as you can see ^.^
Any suggestions for topics, if you'd like me to feature your story, have an article to post, or anything else, please comment it!

Share this on your site!
Thanks,
Alicia