20 Things

Today is the last day of September...which means it is the last day of Chiari Awareness Month. This does not mean that we stop with awareness. This just gives us more reason to keep it going!:)

 

My Chiari Awareness Necklace

 

20 Things about my Chiari

1. Diagnosed when? March/April 2003, I was 15 years old

2. Decompressed, if so when? Yes, July 15th, 2003.

3. Other additional conditions, if so which ones? Syringomyelia, Depression.

4. Have you personally met someone else with Chiari? Yes, Some awesome Chiarians and their families from the ChiariPeople of Pa support group

5. Most challenging symptom(s)? Head and neck pain...that would be the worst...but you said Challenging...so I would say the depth perception/balance issues along with the speech/slurred words/tripping over words. They are the most challenging as it interferes with walking and talking. Walking...I trip...fall...miss steps...walk into walls...pillars..etc you get the point. Talking....I may repeat the same word over and over again and not be able to stop myself to get the next word out. Or it will come out in a jumbled mess. That makes work challenging. I usually laugh it off...its the easiest thing to do although it is frustrating.

6. Most embarrassing Chiari moment? Oh wow...so many. The time I went to take my pants off..changing into pjs or something and I literally fell out of my pants. Note to self: Sit down when taking pants off. Walking straight into the pillar at work. Walking into the wall at work. Lets just say there are a lot.

7. Biggest Chiari frustratsions(s)? The pain. Having to explain yourself to others because they do not understand. The assumption because I look ok that I'm feeling ok/not in pain...so carry on as usual. Chiari itself. Not being able to do "normal" things.

8. Number of medications in your personal medicine cabinet? Are we talking perscriptions or overall? I've got Topamax, maxalt and the rest are OTC which don't help much.

9. Number of Doctors/Therapists stored in your phone? Chiari related....3 if you count my regular doc

10. Do you attend Dr appointments solo or with support? Used to be with someone in the beginning. Now its usually solo.

11. Biggest regret that Chiari has created? I feel like I lost my teenage/20's years of hanging out with friends and partying. That sort of thing. I don't know when I'm going to feel like absolute shit...so I don't plan much ahead. I try not to drink alcohol so I don't get head pain from that.

12. Biggest lesson that Chiari has taught? It has taught me to be strong. It has taught me that there are more important things in life. It has taught me to grow up and not take everything for granted. Although, there are days I lose sight of that, the pain just knocks a reminder back in.

13. Favorite non-medicinal therapy? Ice packs. Seriously I'd walk around with them as a Icepack helmet if it would stay cold 24/7....

14. Worst medicinal side effect? When I first started taking topamax (which is to help me with my  headaches and migraines (not the chiari headpain)) the initial sideeffects heightened my already numbness and tingling. It was terrible. I thought something was seriously wrong. I saw my NS and he had me see the Neurologist and we did tests etc and then cut the Topamax dosage in half...half in the am/half pm...after about a week it went back to my normal numb/tingling....

15. Biggest change in your life since diagnosis? I'm overly aware of everything I do and how it affects my head. Whether it be an activity, excercise, or even going to a concert (I've posted that before about my friends covering my head when assholes throw beer bottles at concerts)

16. Worst medical test? Only had MRI's, CTscan, and the Neurological exam...they weren't that bad...the MRI's could be less noisy though...

17. Hardest thing to give up because of Chiari? Rollercoasters! I had finally just started to get on them...I was addicted. Nevermore.

18. Have you become more or less religious since diagnosis? I don't think it has changed much.

19. Where do you find enjoyment now, that you didn't before? I have met a lot of new people from all over the world with this disorder through facebook, twitter, and other networks. I am also artsy so I spend time working on different things.

20. Favorite Chiari websites?

They are all actually listed on the right hand side of this page:)

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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Follow on Twitter @BearlyBurnt

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

25 Years Young

Hey all! Sorry it has been awhile! I have been so busy and overwhelmed with real life. Since I left you last I went to the Outer Banks for a week with my boyfriend and his family. I had a great week! It went way too fast of course. Luckily, I only had 1 real bad Chiari day. The day Joe and I went to the beach was very hot and humid. I think the heat and laying out on the beach just killed me. My head messed that day up a bit. So we cut our beach time short. I ended up laying down for a few hours when we got back to the house. Overall though, I had a great time! I wish I could be back there.



At the pool soaking up the sun.

On sunday, I celebrated my 25h Birthday. We had crabs, cake, and presents of course! I had a wonderful birthday! I have pictures but they are not uploaded yet.

I've been crafting a bunch lately. I may have some of those items to share with you in the next post.

 

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The 14th Annual Horrorfind Weekend Convention is coming up this weekend. I will be working admissions again. August 31t - September 2nd at the Wyndham Gettysburg Hotel in Gettysburg, Pa.
If you're heading out for Horrorfind Weekend be sure to say hi!!

HFW Staff photo a few years ago

 

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September is coming up very soon. If you didn't know...September is Chiari Awareness Month. So what are you doing to spread awareness? Share your ideas in the comments and be sure to head over to Chiari-Life on facebook and LIKE us.
Some states have September recognized as Chiari Month. Does yours? You can check by looking through your governors page for information. Also you can check here for different bills and resolutions through the Federal and State Legislation
I found one for Pennsylvania for 2011.
I hope we can all come together and raise more awareness.
Let's get #Chiari trending on twitter for september! Be sure to add #Chiari to all of your twitter posts. Follow me @BearlyBurnt and RT #Chiari:)

Creative Chiari

Chiari Carnival #5: Creative Chiari
Topic: Created by Chiarians

I've always been creative. I've been artsy and crafty. I could honestly spend hours in A.C. Moore, Michaels, and Hobby Lobby (Which by the way is one of my new favorite stores.) I can't go into Hobby Lobby without it turning into Walmart. I head in for glue sticks or cardstock and head out with a cartfull! I love that they always have 40% - 50% off coupons too! That helps. Oh and if I go in when a good sale is running. It takes everything for me to not get anything. I seriously have a box, some drawers, and other storage that are full of randoms that could be used for any sort of crafting. Clearance finds are always great.

BearlyBurnt - Woodburned

Anywhoo. I draw, paint, cardmake, scrapbook, papermake, woodburn, sew(not to the extent of a sewing machine...I'll leave that to my sister Karen), I sculpt, I [will] cricut for many things (this will be recent as I just got one last year for christmas! Thank you Millers <3 ), shirtmaking (something I just did recently for my best friends Bachelorette party.), photography, cooking/baking (I call it creative) and I can't think of anything else.

Handdrawn - CreepyCards Christmas Exchange

Woodburned - Classic Horror Coasters

 I do have a shop on Etsy called BearlyBurnt. Though I haven't set it up to sell anything yet. I'm still working on it.

BBPhotography - Wedding Cake Yum

BBPhotography - Cupcakes (Made by Me) Bridal Shower

If you're interested in viewing all of the items I've made and have uploaded click here

BearlyBurnt Album

Crafting is relaxing, frustrating, and fun. I enjoy it. I hope to get my ideas in order and start making progress on my BearlyBurnt business.

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

If My Life Were a Movie...

Chiari Carnival #4: Summer 'Blog'buster
Topic: If My Life Were a Movie

For a month I've been thinking about who would play me in my movie. My first thought was Julia Roberts. I mean she's an amazing actress and the red hair. LOVE it. Then I was thinking about how my movie would play out. If I had Julia...she would play my older self. I don't know that part of my life yet. So I started focusing on who would play my younger self. I tried to think of someone who would fit me, could look like me, whose personality could fit mine. The best I came up with was Emma Watson or Alexis Bledel. They both have book nerd characters. But something about them still didn't fit. So I went to the internet and tried to find my celebrity look-a-like. Yeah I really did that. What were my results?
64% match with Charles Manson. Nice. So I picked a better picture and tried it again. I did get Alexis Bledel as a result along with Kristen Bell. I still don't feel it. Then I thought, well hell this is my movie, about me...who could play myself better than myself...? I was in a commercial as a zombie before. (It's the truth) I was also in a carpet commercial when I was little. I have experience. (HA.)

Letter to Normals

Normally I would just post a link to an interesting article I found, or quote it. But I found this to be right on target. I am going to post the entire article and a link below. This site has a lot of great information and coping advice. It is the Fibromyalgia Network. I belive this relates to those with any invisible illness/disorder/disease.
Letter to Normals: Getting Others to See Your Symptoms

"These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day flat on my back in bed and I might not seam like great company, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please don't say, "Oh you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welome.

Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can't move. With this one it gets more confusing.

Please repeat the above paragraph subsituting, "sitting up", "walking", "thinking", "being sociable", and so on... it applies to everything. That's what a fatigue based illness does to you.

Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that  one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make me feel better, and an often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end?!) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct. - if I could do it, I would.

Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chonic illness.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at on point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with fibro then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the internet) between people with Fibro, if something worked we would know.

I depend on you - peple who are not sick - for many things.

But most importantly, I need you to understand me."

(I cut out a few paragraphs as they are more specific to Fibro)

Letter to Normals

As I said last post...It's hard to understand the unknown. It's hard to understand what you've never personally experienced.

I will be walking for the Chiari & Syringomyelia Foundation's Unite@Nite Walk June 16th in my neighborhood. If you are walking Solo (as I am) or interested in joining a team, I have set up Team Chiari-Life feel free to join and help us reach our goal!!
To Donate, Register, or Sponsor please click here:
Team Chiari-Life

Check out DesignsByDayzi for Chiari Awareness items, proceeds go towards the walk!

-Alicia

When it rains, it pours

Chiari Blog Carnival #3: When it rains, it pours.
Topic: Dealing with difficult people in addition to dealing with a difficult illness.

"But you don't look sick?"
(Photo provided by Eliza Jayne Photography)

The first thing that comes to my mind is "But you don't look sick!?" Yeah, we get that alot. Chiari Malformation is considered an invisible illness because you don't usually see the symptoms on the outside.
Of course I look normal.
You can't see the pressure in my head.
You can't see that it feels like my head could explode at any minute.
You can't see that my hands and feet are numb and tingling.
I may stumble or walk into something, but I just look clumsy to you...You don't see my balance and depth perception problems.
You don't hear the ringing in my ears.
You hear my speech slurr or I trip over my words. You laugh, I laugh. But do you know why it happens? Does that come to mind when you hear it?
You don't see me almost black out from getting dizzy and lightheaded if I drive too fast over a hill.
(I know why I can't ride rollercoasters.)
I could continue to go on and on with the list.
I have tried looking at things from the opposite point of view. The other person can never fully understand what you are going through. They may try to relate by sympathizing with you over something they have gone through. "I've had surgery once. I went in to get my tonsils taken out"
Oh ok...not quite on the same plane as brain surgery. "So you're cured now that you've had surgery right?" No surgery is not a cure, just a form of treatment. "Oh."
People do not understand why surgery if its not a cure. What is the point of surgery?

When I first had major problems I went back to my family doctor a few times for "migraines". Each time I was given a different medicine or something to try. Finally he ordered an MRI after I went in and couldn't turn my head at all. I was lucky enough to be referred to a NS who knew of Chiari and wasn't afraid to work with it. He has followed up ever since. I was diagnosed in 2003.
A lot of people go through several doctors, neurosurgeons, neurologists, and other specialists before they are diagnosed.
After dignosis its a mixed feeling. You're relieved because you finally have an answer for what you're going through. But on the other hand....what do you do with it?
You barely understand it, how will anyone else? So you begin to tell your family and then your closest friends. Again...they don't really experience what you're going through. They know what you're saying. They don't feel the pain. It's hard to sympathize with the unknown.

This topic fits well with what happened two weekends ago. We had the bachelorette party for my best friend, Abby, on April 20th. We all took her out to dinner. Then we were off to the bar across the street from her house. We had a limo scheduled to pick us up about an hour into that as surprise. The limo would drive us around town to various bars for the night. Now let me first say I was the only female in the bridal party aside from the bride. Abby and I have a lot more male friends. She had me (her maid of honor) and 3 boys her bridesmen/maids. The bachelorette party was mostly men. haha.
Anways. We went throughout the night all was well. I was mostly pain-free all day. As it got closer to the end of the night...my head started. (I do not drink and did not.) It was about 12:30AM and we had about 2 hours to go. I couldn't crap out and leave. We went for 4th meal at taco bell. I didn't get anyting as I felt nauseous. I thought I was going to puke from the smell when the food got into the limo. But I was ok. Everyone was offering medicine or alcohol (lol thanks but that won't help?) and what they could do? My head continued to get worse and the pressure in the back of my head grew. We parked across from Abby's house and thanked the driver. We walked over and I knew I was about to vomit. I whipped my hair up in my hand out of my face. I projectile vomitied on the sidewalk. It was like some kind of Exorcist move. It was a good thing no one was in front of me. Abby said something like "you puked like a rock star" Everyone was like "WHOA" because it came out of nowhere. They were all trying to help hold my hair and rub my back and ask if I was ok. At that point I to be left alone for a second in case there was more.

Bridesmaids L to R:
Mike, John, Abby (Bride), Me, Brad

The good thing about it...I made it to the end of the night, Abby had a great time. And my friends actually got to see something that Chiari does to me. They were able to see a bit of the pain I was in. If they couldn't see the pain on my face...they saw it when the vomit shot out of nowhere.

Don't forget to check out the rest of the Carnival!

Unite @ Nite

Busy busy busy. I have so many things in mind to do. So many projects I want to start. You should see my notebooks and laptop bag. Filled with notes and ideas and topics etc. I'm sure half of them are repeated ideas. Every time I organize them, I start it all over again. I will get to them. (one day.)

So on top of all of the things already listed...I have registed for the Chiari & Syringomyelia Foundation's Unite @ Nite walk in June. They have a few site locations listed. If there isn't a site located near you, there is an option for a Solo Walk around your neighborhood (or whereever).
There isn't a walk near me so I signed up for the Solo Walk.

I have created a team for anyone interested in joining. You can solo walk anywhere and still join. If you'd like to register, join or sponsor my team click: Team Chiari-Life
If you'd like to help click to donate Alicia's Page

My personal goal is to raise $100.00
My team goal is to raise $500.00

Walk Details:

"unite@night will be a one mile casual evening walk, in various locations around the country, during the month of June in 2012. This walk will bring together people who are suffering with the devastating effects of Chiari malformation, syringomyelia, Ehlers-Danlos, hydrocephalus, intracranial hypertension, dysautonomia, autism, and related disorders.unite@night will support CSF Chapters to provide education and increase awareness while funding research projects that can potentially find answers to help those who are fighting these disorders.
**Raise $25 and receive an illuminated balloon**
**Raise $50 or more and receive a unite@night t-shirt and an illuminated balloon**

 To register visit http://csfinfo.org


The latest Conquer Chiari Newsletter is out.
You can find the whole newsletter here: Issue March 2012

Ray's Corner was interesting.
Dr. Ray D'Alonzo wrote on Staying out of the Waste Basket. Apparently there are conditions/disorders and such that physicians call waste basket syndromes. Basically what that means is a patient comes in with a vague list of symptoms that could be caused by a number of things. In that case it is difficult for the physician to determine the correct treatment so the patient ends up on antidepressants or pain killers and “tossed into the waste basket”.

That explains why so many Chiarians are "tossed" to another doctor to deal with symptoms and pain or even diagnosis. You go into your family doctors for headache/head pain problems.. Really it could be caused by anything. First thing that is usually done is medicine for migraines/headaches. Not an automatic MRI or testing.

In the write up, he also talks about how many Chiarians are diagnosed with multiple conditions. Whether it be depression, Chronic Fatigue Syndrome, or something else. The chances are pretty slim to have One and the other as statistics go. I believe he means that you could be diagnosed with Condition A and Condition B where both can cause the same symptoms. You may have been told by the same or different doctors you have both A & B. Where maybe you only have A but you can't really see if you have B as their symptoms are the same. (Did that make any sense?) It may be best to go to a Chiari specialist (which is a good idea one way or another IMO) who has dealt with Chiari patients constantly over a period of time. This person may be able to differentiate between Condition A & B.

It is something to think about. Definitely read his whole article through. The link can be found in the newsletter above!
Before I go....I hope everyone has a safe and Happy Easter!!

Don't forget to LIKE Chiari-Life on Facebook and share the page!!
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-Alicia

PS. April's Chiari Carnival will be out at the end of the month!

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!

Social Life

Having a social life with Chiari is difficult. It's really hard to make definite plans. You never really know how you're going to feel.

Someone may ask me to hang out Saturday night. Of course I want to...but if I say yes now...my luck, I'll have to cancel. If I say no now, again, my luck...I could have a great Chiari day. I don't know how I'll feel. I get a look or a response that isn't too understanding. I don't know how I'm going to feel 3 weeks, 3 days, let alone 3 hours from now.

So how do I handle a situation like this? How do I handle being invited places without being able to give a real answer?

"You never go out!" "You never feel good" "Your head always hurts" "You don't have to drink! You can just go and still have fun!"

Ok... These responses come different ways. I then feel like I get these behind my back (I'm not saying this does happen...It's just the feeling I get)
"She never comes out" "Don't bother, she's not going to come out" "She'll have an excuse" "She has better things to do"

Examples...I have situations where I used to be asked to hang out all the time and slowly the invites happen very rarely or stop all together.

Drinking...it doesn't mix well with me. 9.5/10 times drinking kills my head. No a drink will not "help your head" as I've been told many times by random people.

-Sidenote- I wanted to punch some asshole in the face last year on St. Patricks Day weekend in OCMD...my head was killing me while we were in the Sandbar. I had a cup of ice up against my head, this ass walks up grabs the cup out of my hand and mocks me and dumped it back in my hand. -End side note.-

If I'm having a good Chiari day...well theres a good chance I can go and enjoy myself. But as I said, I don't know how I'll feel hours from then. I could get there, enjoy myself, decide to have a drink and well Chiari says F.U. no...then the noise, the lights, the pounding, and the pressure. It all begins.
It could go the same without having a drink on a good Chiari day. I could do the same, go out and have fun. Chiari says you know what? You're letting loose too much. Time to slow down. The noise, lights, pounding pressure begins. Is it some kind of sign that I'm overdoing it? Am I straining myself having a good time? Am I not allowed to have a good time?

Ok I know I hardly ever go out. I know myself. I know how I could feel. Why put myself in the situation? I do want to enjoy life. I do want to see my friends and family. I don't want to sit on my ass all day in front of the tv. Some times that is the easiest.

Others may think this disorder is used as an excuse. But really, it holds us back from a lot of things. If only I knew when and how I would feel. Hell, no one knows when they're going to feel like crap! But most people can get out of bed in the morning and just get moving. For others, it takes us time, it takes a lot of effort to get going.

On bad Chiari days...well I automatically know my answer for hanging out.
Inviting in advance is where the problem lies. It is hard to plan for the future. (Vacations and parties and things like that are a give & take...I'll get to that then) If I'm asked the day of or the night of to go somewhere...I'm more than likely able to give a definite answer.
Chiari comes along with me wherever I go. I can't just leave it at home for a few hours. (I wish)

Making long term plans...well you sort of have to go with the flow. Making plans for vacation...again you don't know how you'll feel. But do you really want to skip out on a week vacation? At least you can lay on the beach and feel like shit? Other sorts of plans...Weddings, Birthdays, etc...you have to do the best you can to make it through to support your friends and family.

Basically what I'm getting at...when you invite someone out with an invisible illness...take into consideration what they are going through. You may not fully understand what they are dealing with and thats ok. If they can't make it out....don't stop asking. If you feel they aren't coming out because of other reasons, talk to them about it. If its the case stated above...try asking closer to time/date. You both may have better luck. They won't feel left out and you'll get to spend more time with your friend again:) You're support is what they need. It helps a lot.

This brings me to the Spoon Theory if you haven't heard of it or read it yet. Please take a minute to read it. This is a great way to explain how someone with an invisible disorder/illness/disease goes through their daily life. Some people have more "spoons" than others daily. Be greatful if you have an endless amount!

Yesterday I had all four wisdom teeth taken out. 2 were impacted and the other 2 just pulled. My mouth is quite sore. I feel like I have lock-jaw. Joe took good care of me yesterday too. He took me in and brought me home all doped up. Then he ran a bunch of errands for me and brought me dinner. Dinner was a large thing of KFC mashed potatoes. YUM! <3 Joe! Today it's pudding and jello. J-E-L-L-O!

Joe & I at the Washington Capitals game.

My sister, Karen, over at DesignsByDayzi has made these awesome zipper ribbon pins. They are now available in her Etsy Shop. She is donating the proceeds to ConqerChiari. She also has some brain lockets for sale! Check them out! If you purchase, be sure to mention where you heard about her!

Comments welcome!

Don't forget to "LIKE" on facebook. You can click the link on the Right or here: MyChiariLife
Keep watch for our next Chiari Carnival coming at the end of the month!

Rare Disease Day!

Welcome to the first Chiari Carnival celebrating Rare Disease Day.
Introduction:

Hey, I’m Alicia. I blog to share my experiences in order to help others and spread awareness on Chiari Malformation and Syringomyelia. I also have a facebook page based on my blog sharing information as well. MyChiariLife. I am involved with an online support group for Chiarians: Chiarisupport
I have my Associates Degree in Business Management and I am currently the Asst. Guest Service Manager at a hotel in PA.

Chiari is typically a birth defect that goes unnoticed for years or decades. When did you receive your diagnosis and how old were you?

I was 15 years old when I was diagnosed with Chiari Malformation and Syringomyelia. I was diagnosed in 2003.

Many Chiari patients have been diagnosed with other conditions. Do you suffer from any other conditions besides Arnold Chiari Malformation?

Syringomyelia and depression.

Patients who have had decompression surgery are referred to as zipperheads. Are you a zipperhead and have you had any other Chiari related surgery?

Yes, I had decompression surgery in 2003, about 3 months after diagnosis. I haven’t had any other surgeries.

Western medicine focuses on medicine and medical procedures. However, many people benefit from ‘alternative’ therapies. What is your favorite non-medical/non-medicinal treatment for symptom relief?

Ice packs. Freezing the pain. Ice packs are my best friends. One on the base of my head/neck and the other on the forehead.

Since Chiari affects the brain and nervous system some patients report symptoms which are difficult to describe. What is your most bizarre symptom?

Depth perception is way off. I could be walking through a doorway and somehow end up walking into the door frame instead. Although I know I’m seeing myself walking though the doorway…BANG I’m walking into the frame. ALL the time.

Twisted/slurred speech happens a lot. When I get excited or I’m talking fast it happens most. I trip over my words or repeat them over and over until I can make myself stop and start over again.

Dealing with pain and symptoms day after day can be very challenging and many state that their loved ones just don’t understand. What would you like others to know about living with Chiari?


The only thing you can do is “Keep Moving Forward” to quote Walt Disney. You have basically 2 choices…let the disorders overtake you or you can overtake the disorders. If you want to live your life…unfortunately you have to get up and get going on your bad days as well as your good days. It’s a pain…literally but the alternative isn’t much of a life to me.


Attitude is plays a huge role in feeling healthy. What activities do you engage in to keep a positive attitude?

Reading. I’m a book nerd. Harry Potter is my love. Disney. Music. Movies. I’m crafty. Paper-crafting, woodburning, and other artsy fartsy stuff. Act goofy. Hang out with my boyfriend. Joe is my support, he takes me seriously when I'm hurting and helps me make the best of it. Time with my family and my friends.

A great quote can remind us to keep the faith during those dark moments in life. Can you share a quote or saying that provides you with inspiration?

I love Disney so here are some:The very things that hold you down are going to lift you up. –Timothy

Mouse (Dumbo)
Be yourself here, and if people aren't taking you seriously, then they need to change, not you. –McQueen
You're braver than you believe, stronger than you seem, and smarter than you think. –Christopher Robin

On behalf of ChiariCarnival thank you so much for sharing some of your Chiari journey with us.

Sure thing:)

If you're interested in joining our carnival let us know! Click the link above.

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