Tuesday, October 15, 2013

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.

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!

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:)

Don't forget to LIKE Chiari-Life on Facebook!

Tuesday, March 19, 2013

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!)
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) 


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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Wednesday, January 16, 2013

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?)

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)

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*

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)

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!