Nitwit. Blubber. Oddment. Tweak.

"..I would like to say a few words. And here they are: Nitwit! Blubber! Oddment! Tweak! Thank you." -Dumbledore - Harry Potter

Well Happy New Year 2015! It's been a whole year since I've posted. (I'm really good at this.) If you're following on Facebook, you'll see I post there a bit more at least.

Let me catch you up on the last year. 2014 was a big year for me. In April, Joe and I went to Disney World (yay!) On April 6, Joe proposed in front of Cinderella's Castle. Of course I was a bit out of it that day due to some med changes so I picked the farthest spot from the castle to get pictures because of lines and I was antsy. Usually I'm all about pictures and he's just the opposite. I should've known something was up when he kept trying to get pictures. We finally get to a photographer, at the farthest spot from the castle down Main Street. I went to put my arm around him and he said hold on. I thought he was going to tie his shoe when he got down on his knee. When I realized what was happening all I kept saying was "Are you serious?!" (which I repeated so many times!) I said yes :D

We didn't hear anyone who had stopped to watch and clap and cheer until we hit the real world. It was like we were in our own little place. This lady walked past us and said "I saw that!" Hahah. About a 1/2 hour later I got a phone call from a Disney Photopass Manager letting us know that something happened with the camera settings and the photographs didn't turned out. (I'm dying inside) They wanted to meet us wherever we were and take us to the Rose Garden in front of the castle to re-take the pictures for us. We were really crushed that the pictures were ruined. But on the other hand Disney took care of the situation before it became a situation. They didn't wait for us to come to the photopass center at the end of the day to find out. There would've been a higher chance of problems this way. We got our pictures done and done. I do wish I knew what the originals looked like.. But I have my imagination. (I don't know which is worse?)

We were house shopping and as of the end of June we settled, then moved in beginning of August. We are unpacked and settling in. I have yet to get a picture of us in the house. (Shame on me.) I have Plenty of me, Beanie (the dog), and Toothless (the blue-tongue skink). Joe---nope. The 4 of us...nope. I swore we were getting a family picture with the Christmas tree before that sucker came down. Never happened.  I think I covered the gist of  2014?
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Chiari...Same old shit. I really need to record my pain, all of it. All the symptoms I have and everything that goes along with it. I talk about a Chiari Journal. I have probably 3-5 journals at home, nice Harry Potter or Disney print and they're sitting empty. No excuse.

Something I'd like to ask or actually start a discussion about on the Chiari-Life Facebook page, is about Depression. Were you diagnosed with Depression after you were diagnosed with Chiari? Or even before your Chiari diagnosis? Also, what type of depression were you diagnosed with? What  medicines you were put on? Are you still taking them? How did they effect you?

I was diagnosed with Depression after Chiari. But honestly I can't remember when. It was years ago. I've been on so many different depression meds to finally get to one that helped. What I didn't do is write down how I felt on each med or what effect it had. But I had constant weight gain from the depression meds. Even on low dose. No change in diet at all. When I got off of them I dropped weight. After I was regulated on one for about 2 years (maybe 3?) my doctor wanted to ween me off of it to see how I was. That was the med I stopped during the above Disney trip. Since then we've had so much going on that I haven't had much time to settle myself to really know how I'm doing. And as I said, I should be recording these things. Not just my Chiari pain. It would help me discover if there was a pattern (yes mom, a pattern). So here's to figuring things out.

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Essentials

Time is moving way too fast. I feel like I'm sleepwalking or something. I don't know how months are going by and then BAM its 2014. January is here. Oh and it's already the 12th. WTF. What am I doing? Where the hell did Halloween, Thanksgiving, Christmas go?



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I have discovered some uses of essential oils. (If I've posted about this...well here I go again because as I say above I don't know where time has gone and my memory is gone with it I guess.) Eucalyptus and Peppermint oils are amazing. Last year (2012..) for Christmas, Joe got me a set of 6 oils. I wanted to try them since I've heard some people use them for head pain and such. Well, as a Chiarian you and I know that head pain is and can be the worst ever and sometimes ice packs are our only friends. One day I tried the eucalyptus oil. I put a few drops on a cotton ball and rubbed it on my temples, forehead, and neck. Within seconds those areas began to get cold. A very cool sensation. It was cooling and relaxing the area. After a few minutes it was easing the head and neck pain. It didn't completely get rid of it, but it was bearable. It was like a friggin miracle. It felt amazing. I felt like I was cheating on my ice pack though. After the oil sort of wore off, the pain was almost gone. Partly because the head pain itself had been gone and because I was relaxed I guess from the oil. Next time I had bad head pain, I tried it again. Needless to say, I went through the small bottle of eucalyptus oil very fast. Joe joked that we can never go to Australia now because I'll be attacked by the Koalas.

I tried the Peppermint oil after the other ran out. It works just as great. You will smell like a candy cane for a bit. There were days when I had to use both oil and ice pack. And reapply the oil a few times throughout the day. But, like I said, it helps ease the pain enough that you're not laying in bed all day (Most of the time). I'd definitely recommend trying it. You can dilute it with water if you want to try it that way. Google directions on that. I tried it without diluting it. Purchased mine here: Amazon

EDIT/to above. Information on diluting oils: National Association for Holistic Therapy 

So this year (2013..) for Christmas, Joe got me 2 bottles of eucalyptus and a peppermint. My sister, Karen, made me a microwave/ice rice bag with eucalyptus and a locket with eucalyptus in it.
Mom got me some Bath & Body Works Stress Relief Eucalyptus Spearmint/Mint Shampoo, Conditioner, and Body Wash. $10 per bottle regular price.
John Frieda also has one called Root Awakening. You can find it at Wal-Mart, Target, Rite Aid etc..

Now this brand has a different effect. I love this and the B&BW. Both are great for stress relief and help with head pain in the shower. However, this one is cheaper, about $3-5 per bottle. And it also gives the cooling/ice affect when you leave it on for a minute or so. Definitely better when your head hurts.

Have you tried using oils? What do you think? Do you have any other items you use? Let me know what you think!

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Something Wicked this Way Comes

Where do I start after 6 months of absence?

I'll start at the present time. It's hard to recap the past.

We had quite a bit of rain this past week. Our house is weird. We have 2 levels of basement. My room is on the upper basement level. NEVER has my room flooded. We've had "hurricanes" hit PA and no flooding in the upper level. But oh yeah I wake up, put my feet on the floor to get out of bed and the floor is sopping wet. WTF. The entire floor was soaked. Puddles. Little puddles all over the place. Of course my laptop bag was on the floor, big expensive Disney books, board games (ok so I have a 75th anniversary edition Disney Monopoly never opened) Camera bag, you name it. Why is it that all of my nice stuff was on the floor?! THANK GOD my laptop was double bagged...it only went through the first bag, and not the sleeve. The camera safe. The books....:'( Ok well I don't know if you know how I am with books....I don't like my books ruined, I don't like my book pages bent, folded, wrinkled etc. Do you know what water does to books? UGH. So now I have curly paged books. They're expensive. I can't buy new ones. That's stupid. The monopoly collectors edition had to be opened...it was soaked through. I spent the next day with Joe (to the rescue) moving furniture, packing my life away, soaking up the carpets, [Floods + Chiari + Allergies = Do not mix well] We were up until about 4 AM the next day just sucking up water. Joe was the best. He did the most of it. He didn't have to. He kept making me go upstairs and sit/lay down. <3 I owe Joe big time for his help though. I think I'm going to owe him Chipotle for life.
So now I'm in the drying process. Rotating furniture, drying, rotating, drying. It's tedious. And it smells.

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A Chiarian named Teresa Taft messaged me on my Chiari-Life  page to let me know about this Facebook group called: Chiarians Swap Socks.

" I have started a group called Chiarians Swap Socks; a way to show an act of kindness and spread awareness at the same time. I just started in about a month ago and I can not believe the response. It's amazing the kindness and the effort we are making to spread it through out the world! What we do is post on the group wall that we are looking to swap socks or a sock buddy then people will comment if they want and exchange info through personal message. This month socks are to try and have purple in them, because that's our ribbon color, and also those that want can help bring awareness to childhood awareness this month also which is yellow.  Next month will be pink for breast cancer awareness. The most important part of this group is decorating our envelopes with Chiari Awareness; sharing what we know and hoping for better education for doctors. We are in the US, Australia, UK, Canada, and more. You  don't have to have Chiari to join. All I ask is that you put the name of the group on the envelope, so everyone will know where it came from with Chiari Awareness under it please. Thank you so much for letting me tell you my story. Some of my words may be messed up or my sentences don't make sense I'm sorry it's part of it two there are over two hundred symptoms for Chiari
This is my way of trying to help mainly living on the couch or bed because of pain and the medication We need help , we need a cure cause there is none. "

The basic idea...You post in the group that you're looking for Swap buddies...wait for others to reply. Or reply to others who posted looking for Swap buddies. Then you PM (private message) each other addresses. The fun part...Sock shopping. Head out to Wal-Mart, Target, $5 Below, $1 Store etc. and get some fun socks! Each month Teresa will post a few different Awareness ideas for that month. Its up to you if you'd like to send socks of that awareness color/idea or if you want to stick with Purples or Holiday Socks etc. You can throw in trinkets, teas, charms, etc. Anything else is entirely up to you. The packages....Design the outside of your packages until you fill them up with Chiari Awareness facts, statistics, symptoms, pictures, and anything you can think of. (Be sure to leave room for the addresses lol)






It is a closed group so member information stays private. The idea is to spread as much awareness as possible by the changing of hands through the postal system, while having fun doing it. If you're interested in taking part click below:
Chiarians Swap Socks
You do have to have a Facebook account in order to join.

Teresa Taft has spent a lot of time, energy, and money on this project. She has put her heart and soul into this. If you could take a minute of your time and stop by Anne Marie Tiernon WTHR and post something on their page about Chiari Malformation. Let them know what this disorder is, how it affects you and your life. Let them know about the group and the awesome job that Teresa is doing!

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I've also found this awesome site for vinyl window decals: Dip Graphix & Dip Graphix & Decals

They have a huge sale going on with their Chiari Awareness decals until the beginning of November! You can get a pack of 30 for $25 or 50 for $50. Otherwise they're $2.00 each. So be sure to stop by and check them out!! Tell them Alicia at Chiari-life sent you:)



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Disney Bound

Having Chiari comes with a lot of complications. One of them being restrictions. Such as weight lifting restrictions, no contact sports, no roller coasters, etc. Lets talk about the No roller coasters. I hated them growing up, I was terribly scared of them. 8th grade, 1 of my best friends talked me into going on one during a Youth Group trip to Dorney Park. Since then...I've been IN LOVE. Then Chiari made it's appearance and 2003...Dr. Schleagel said no coasters.
Now I plan ahead if I go somewhere. Hershey Park, Disneyworld etc. (You don't, I do...it helps)

Most theme parks have their restrictions/health requirements listed online. (I.e. Mouse Counselors WDW Ride Restrictions) Look them up ahead of time. My NS told me no more roller coasters after I had decompression surgery. Basically anything with whips and turns, ups and downs, flips and flops etc are a NO. I can fully understand why. Roller coasters are extremely fast. And going around twists and turns and ups and downs at high speeds are rough. I get dizzy just driving too fast down my street, which has 3 steep-ish hills. The way I explain it...you know the feeling you get when you "lose your stomach" from going too fast over a hill? I get that feeling in my head. Like my brain jumps. I "lose my brain" it makes me naseous, dizzy, and lightheaded. Shit...I get dizzy/lightheaded on the Carousel....riding a stationary horse. My advice...you know yourself. You know what you can handle. If your NS said no coasters. Listen. Also...look up your ride info. If it says "For safety, you should be in good health and free from high blood pressure, heart, back, or neck problems, motion sickness, or other conditions that could be aggravated by this adventure. Expectant mothers should not ride."

Then you should definitely take it easy. Watch what the ride does first. Does it have the safety warning because it's fast? Are there a lot of sharp turns? Do I want to chance it? Do the back of the seats go up to my head/or is it low (less head/neck whipping if your head/back are against something)? Is there a lap bar? Does the ride have an over-the-head/shoulder restraint? What type of restraint does it use?
I started a discussion on Chiari-Life Facebook about theme parks. I was curious to see how many others had been told no to coasters and other rides. Also curious about if they listened, what their explainations were, and how they decide whether or not they ride. (Join in the discussion!)

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Joe is taking me to Disney World and the Wizarding World of Harry Potter. I am so excited. I've been counting down. 17 days to go! I have outfits put together so I can go as "characters". Have you ever seen the Disneybound outfits floating around the web? (If not check them out!)
I decided to put together my own Disney character inspired outfits.
 

So you get the idea. I have an Ariel & a Jasmine outfit I'm working on also.

As for Harry Potter...we're going to be there 1 day. Do I go as Gryffindor or Slytherin? Or both? AHH. Or a specific character? (/nerd) 

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Chiari Awareness Necklaces are finally available. I have had them in store since the begining of February. You can check them out here: BearlyBurnt - Etsy and here: BearlyBurnt - Facebook (be sure to LIKE the page for updates!)

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Follow me on Twitter, Pinterest, Facebook

 

Killer Cough

Wow.....so I have been gone since last september! My apologies. Since I've been away for so long, I guess there are a few things I should say:
Happy Halloween, Happy Thanksgiving, Merry Christmas! and Happy New Years!
(Did I forget anything?)
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Real life kicked in and I got caught up in it. On a positive note, I finally started my craft shop on Etsy: BearlyBurnt - Etsy and I have a facebook page (BearlyBurnt - FB) set up with all my projects and previous works. Check them out O.o

I decided to change up the colors a bit. Not bad. There are only so many shades of purple that can be changed around to keep it Chiari related. I also added some pages under the Blog title at the top. I adding more/editing them a little better soon. (I hope)
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Update on me as of right now: I'm sick. Stupid ass flu. I've been sick since last thursday. Which brings me to the name of this post. Killer cough. Those of you with Chiari will understand. Any cough, sneeze, stretch, poop (or Bender as dad calls it), or any other straining of the muscles in the back - connected to the brain area.... KILLER. If you've ever had the flu..you know how much it sucks in the first place. I had the ridiculous pain all over, pain-sensitive to the touch, extreme chills, burning fevers, chest congestion. This was the begining of it. Oh I forgot headache/headpain. How could I forget? It then progressed to sweats, runny/stuffy nose, coughing, sneezing, sore throat, and the rest listed before. Oh and the head pain that wouldn't go away....which was more of a background aching that just hung around mocking "Well everything else hurts so I thought I'd join in and hang out". Literally every cough pounded my head. With every cough it felt like my brain was going to pop out of my skull. (Oh wait..it already is) So much pressure. It wasn't even that I was coughing a lot (Thank God!) it was the severity of the coughing and the straining. If you only knew what that felt like.
Now a week later, I am starting to feel better. *knocksonwood*
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I posted a few days ago asking my facebookers on Chiari-Life for topics. So far everyone as come up with some great ideas. I will do some research on them to have a better idea on what I can tell you.

What to look for in upcoming posts:

-Weather and its affect on Chiari Malformation

-What causes the never ending headpain (I'd like to know this myself)
-Does diet effect your symptoms
-Pediatric Chiari
-Syrinx and Nerve Damage
-Arachnoid Cysts
-Lupus & Chiari (I think I will add other related disorders as well)
-Life after surgery and diagnosis (This is tough as everyone is different. On the other hand...this topic is the general idea of my blog)
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I have created a board on Pinterest (I'm so addicted to this site) for Chiari-Life. Follow Chiari-Life on Pinterest

Until next time!
-Alicia

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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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.