Charlie Chatter

One Year

2012-01-27T07:15:00.000-08:00

Can you believe that it has been a whole year since the stroke? I can't decided if it has been a long year or a short one?

"Nice try stroke, but I'm still here."

"I had a stroke what's your excuse?"

Thanks for the funny hoodies mom.

Just so you know stroke humor is crazy hard to come by.

I've found that doctors love to explain things by comparing them to fruit. They told me that a human brain is about the size of a large grapefruit. It's embarrassing to say, but I've held more human brains (thank you anatomy and physiology) than grapefruit so I'll just have to take their word for it. The part of my brain that was damaged was about the size of a plum. That's a big percentage of brain! If someone stole a chunk of my grapefruit the size of a plum I think I would notice.

I love watching those videos to see how far my speech has come.

I've had lots to relearn. It's still a struggle to swallow, and talking sometimes takes concentration. I can't hold onto information like I could before, most of my left side feels like it just got back from the dentist, my hand fights me every ASL class, and I keep getting disoriented around campus. There is more I could list that remind me every single day that I've had a stroke, but the list of blessing is much longer.

People keep telling me I'm "such a fighter," which makes me laugh. It's important to me that you know I'm not particularly strong or persistent. I was given strength that was not my own and gifts of healing I don't deserve. Everything I've gotten back has been a blessing and I couldn't have done it on my own.

I've been surrounded by good people who've encouraged me and loved me through all of this. So many of you have become angels in my eyes.

I've been going over some of the blessings that came with the stroke and I'm in awe.

It's easier to be happy and I laugh more often.
I've found I'm more capable then I ever supposed.
I've felt a closeness to our savior and I rely on my faith more.
I got to spend extra time with my family
I'm able to do most everything I did before the stroke.
I've gotten an inside look at what it would be like to be an SLP.
I got to ride in a helicopter :)
I got the coolest nick-name ever "stroke jade" I'm not kidding that is what my medical bracelet said. I think it's going to replace Cocoa motion.... you didn't know that was my nickname?

I would list more but it could go on for pages.

One thing I really do miss though is being able to fake a smile. My fake smile just looks like a lopsided grimace. Who would have thought I'd miss being able to lie with my face.

I still use the X-Jet(power chair) around school. Without it I would be blacking out lots more. The X-Jet is such a lifesaver.

The hole in my heart is still leaking but not nearly as much as before.

The pacemaker is wonderful. If I were allowed I would go and get myself another one in a heartbeat. (Ha-ha.)

The Eye doc says that the glaucoma has advanced but not enough that we need to start treatment. Whew!

I am in he midst of a rather difficult semester. I am exhausted, stressed, and for some inexplicable reason I still love all my classes.

So I guess what I'm trying to say is that I'm doing good.

PS I thought I would share this link with you about stroke awareness. Why? Because it made me laugh. I haven't seen a stroke awareness add that doesn't totally crack me up there is even one that teaches you to do a dance called "the stroke" I don't want to ruin it for you should you look it up but it involves you pulling half your face down and swinging one of your arms around all limp. Sound awesome right? Oh boy I will just give you the link it's too funny leave off.

What?

2012-01-16T12:28:00.000-08:00

I have recently learned a few things that have been very disconcerting

First, the great wall of China is actually the great walls of China. There are multiple unconnected sections built during different dynasties, and whats WORSE is you cannot see the great walls of china from space! What?

Next, Haagen-Dazs a logo for a delicious ice cream brand doesn't actually mean anything. The founders made the word up deliberately trying to trick us into thinking it was a Scandinavian product. Good lie though, Scandinavian ice cream does sound like it would be especially tasty.

I know it's upsetting but celery, that green, fibrous, tasteless stick everyone eats when they diet is not actually negative in calories. Yup I'm pretty mad about that.

Finally, remember that cute, shy, nun from sister act, whose voice is so great? Brace yourself, it is a lie she was lip syncing. I spent my childhood loving that nun and her voice . Sister Mary Robert I feel so betrayed.

That family that breaks a hotel bed together stays together?

2011-12-31T10:48:00.000-08:00

If you know my mom then you'll know these were all her idea. Pretty great right?

Most Mom's say don't jump on the bed you'll fall and break your head. My mom says, "Me first!"

The best Christmas tradition ever.

2011-12-16T09:07:00.000-08:00

My favorite Christmas tradition is called the Christmas ball. This tradition comes from Marian D Hanks. My great grandfather served a mission with President Hanks and incorporated this Hanks tradition into our own Christmas celebrations.

We do the Christmas ball on Christmas eve. Everyone sits in a big circle on the floor and we start to roll the ball.

The ball used to be rolls of paper towels with a prize taped to each square but now we use beautiful material balls my Aunt made. Each pocket has a prize something like; gum, pencils, whistles, dish clothes, (I hated getting dish clothes as a kid) gift cards, and the occasional number.

The numbers are the best prizes, they mean you'll get a BIG prize after the ball is over. There are also papers in some of the pockets and they usually tell you to do something like sing "Jingle Bells," or hand your prize to the person next to you. These papers usually crack me up so long as I'm not the one who finds them in my pocket.

The big prizes that come with the numbers are usually the most exciting part. Your number might get you something fantastic like a bottle of sparkling cider, makeup, a candle, and once I even got an Mp3 player. There are also prizes that kind of stink like; a Chicago Bears wall clock, a solar powered pocket calculator, or jumper cables (which I later found out didn't work very well at all), etc.

The Christmas ball is the best! Even if you're the one to end up writing your name with your hips in front of everybody and win a glasses case as your prize. It's odds on, that you'll have fun being with your family, laugh lots and at least get a dish clothe or two out of it, which I no longer dread and totally hope I get.

The Empty Shoe

2011-12-05T15:33:00.000-08:00

At Christmas time My Aunt will write a Christmas story and send it out to us. I always look forward to them. There was one special story that touched my heart so much that I've thought about it every Christmas since, and this year I thought I'd share it with you.

The Empty Shoe

It wasn't easy for any of us but it was definitely hardestfor Anna when Joshua and Amber moved in. Josh and Amber were foster children who were living with us. Anna was the baby of our family, though no one had dared call her a baby for a long time. She was five, so was Joshua. Amber was six.

Josh and Amber had come from a bad situation. We had to teach them all sorts of things that most kids their age already know. They didn't know what dresser drawers were for or how to hang clothes in a closet. They didn't know how to make a bed, they didn't even know how to get into a bed – under the covers, between the sheets. They thought toothpaste was to eat like candy. They accused Mom of stealing their clothes when she gathered them up to put them in the laundry.

There were other things we tried to teach them. They thought that whoever yelled the loudest was right. Josh especially, seemed to think that hitting was the most effective form of communication. It was not easy to live with Josh and Amber. You never knew what Amber was going to say or do, but with Joshua at least he was consistent. You know he'd hit you.

By December things were calming down – a little bit. Amber only shrieked about once a day. Joshua wasn't swearing or spitting much and instead of screaming, “You need to shut up your fat face you fatty!” he bellowed “Pleeeeeeease be quiet!”

But he still hit. He'd walk by and bop you just because he didn't like the way you looked. Anna had it the worst. Joshua was really mad that she was older than he was – a whole two months. And since she was the only one in the house smaller than he was – he smacked her every time he got close to her.

We were getting ready for Christmas. Joshua and Amber liked the decorations, they loved the music. They were nuts over the presents and the tree. They were a little confused about the Christmas stockings, they'd never had any before. But they felt better about them when they learned that they didn't have to wear them. I must admit my brothers and sisters (and I) found a great deal of delight in telling them about Santa and his elves who were watching and that naughty children wouldn't get anything for Christmas. Most of the time Joshua would just glare and say, “ I don't care.” But I did overhear him asking Mom if she thought Santa would bring him something.

One of our traditions is St Nicholas Eve. On December the 5^th, before we go to bed, we each set out one of our shoes. Inside of it we leave our letter for Santa Claus and a carrot for his reindeer. The next morning the letters and carrots are gone and our shoes are filled with candy. It looks pretty impressive, that long line of shoes full of goodies. And this year there were ten shoes in a row!

The little kids were so excited that they started lining their shoes up on December 1^st. No one was more excited than Joshua. We had to explain to him over and over all about the letters and candy. The more excited he got the wilder he got. He was spending most of his time in time-out. Then he refused to stay in time-out and Mom or Dad had to hold him – tightly- while he kicked and screamed and thrashed around until he decided he was ready to settle down. He didn't seem to believe us when we told him that Santa wouldn't bring him anything. By St. Nicholas Eve Josh was totally out of control. He slugged poor Anna every time she was in the same room. He tore up a book. He pounded on the piano. He knocked over chairs. He yelled. He threw his toys. He slammed doors. He sassed, he spit, he swore.

Finally Mom, who was holding him in her arms while he hollered told him, “Joshua, I am very sorry. Until you stop hurting others, you will lose all special privileges.” I don't think he understood what she said, but he did get very quiet when she set him down and took his shoe from the line in front of the Christmas tree. Later, after he'd been sent to bed, I saw him sneak out of his room and carefully put his shoe back.

We woke up early the next morning and St Nicholas had come. We all hurried to claim our shoes. We were noisily exclaiming over our bounty when we noticed Joshua. It got very quiet. Joshua looked at the shoe in his hands. It was empty. He held it up to his face and peered inside. He turned it upside down and shook it. He reached his hand in – all the way. Then he looked at us. His face crumpled and he sobbed and sobbed. I was about to tell him “I told you so,” when I saw Anna. She held out her hands to Joshua. Her arms bore the scratches and bruises that were Josh's signature. In one hand she held her candy cane and the other hand was full of bright foil wrapped chocolates.

“Don't cry, Joshua, you can have mine.”

Before the tears had dried on his face, Joshua's shoe was overflowing as we each shared, even Amber. He grinned happily as he counted his candy, but sometimes he would stop and look at Anna with a puzzled expression.

I wish I could say that Joshua's heart “grew three sizes that day.” He didn't change much, not right away. But I think we changed. You can't love someone, really love someone, whether they're nice or not, without that love blessing you.

And when it is hardest to love a person and you love them anyway, really love them, that love changes you. Joshua not only had never had a real Christmas before, he'd never really been loved before. But that's what Christmas is all about, isn't it!

Merry Christmas.

Brittney called to serve???

2011-11-16T16:11:00.003-08:00

Brittney has been called to serve in the Argentina Buenos Aires west mission! She leaves April 4 and will be speaking Spanish!

Wow Brittney you are in for an amazing 18 months. I'm going to miss you sooo much! At least you will get to speak in you native tongue.

Can you believe that I will have 2 siblings out on a mission at the same time! I keep bouncing between totally psyched and super nervous. I don't think 2 years has ever seemed so long before.

Called to Serve???

2011-11-02T15:20:00.001-07:00

Dominic has been called to serve in the Texas Lubbock mission! He leaves for the MTC February 29th.

Congratulations Dom! I can't believe you are already old enough to go on a mission. I'm going to miss you lots and lots.

My Future?

2011-09-29T15:52:00.000-07:00

If I’m lucky (knock on wood) I may finish school and become a speech therapist. If that happens then this could someday be my job.

Back to School

2011-09-04T13:16:00.000-07:00

The clip shows exactly what I’ve felt like coming back to school after the stroke. Everybody is so smart eager and energetic, and then there's me. I do my best work and I end up turning in a crumpled sheet of notebook paper with gum stuck to it.

This is going to be a challenging semester. Every once in a while I catch myself wondering, “was I foolish to come back so soon?”

Don’t get me wrong my progress has been miraculous. I couldn’t be happier with all the things I’m able to do. It’s just that coming back to school has made me realize that there are lots of improvements yet to be made. Everything is a little bit trickier and I have to work harder than I have before. What’s nice though is that the extra work I put into my assignments and studying is that much more rewarding. I don’t think I've ever been more proud of my gummy wrinkled notebook paper. :)

I guess whether I’ve been foolish or not I’m here now so I plan on putting forth my best effort and with the Lords help I’ll have no reason to be anything but proud of what I accomplish…. So long as it’s an A ;)… Just kidding

Summer Crafts

2011-08-26T13:50:00.000-07:00

It's the end of summer and I'm more than ready to show off the summer crafts my Mom and I completed.

These are pillow cases that I cross stitched I know they aren't really fancy, but I'm proud of them anyway. I did them right after the stroke and since my coordination and concentration were lacking they took more effort than usual.Threading the needle was especially difficult and probably took more time than the actual sewing.

We put together this bookcase for my room I love the look of the craft paper we stuck on the back.

I bought this frame at Savers and had no idea what I was going to do with it. My mom and I played with a few ideas that evolved into something that I now love. There are pictures of my; great grandmothers, grandmothers, mom and sisters(thanks everyone who got pictures to me). We were also able to use jewelry,white gloves, a brooch, pearls, and dried flowers, many of those things had been passed down to us. It became a collage of the some of the women who have helped shape my life. They are all women of faith who loved their families and did the best they could with what they had. I hope someday to be someone who makes them proud.

Las Vegas Weekend

2011-08-07T20:50:00.000-07:00

I just got home from my wonderful Weekend in Las Vegas.

We stayed at the Mandalay Bay Hotel and our room was beautiful. One whole wall was windows and the view at night was stupendous. We saw the fountain show at the Bellagio, and rode a 4D ride at the Excalibur. Their was a beautiful pool and we got to eat at a fancy restaurant called Aureole.

The highlight had to be seeing "Lion King." The opening number was incredible and totally overwhelming. I feel so lucky to have gone on this trip with my sisters and Mom. I never imagined we would get to do something so special. What a fantastic way to end the summer.

All the Girls at MandalayBay

Right after "Lion King"

Aureole Restaurant

Our scandalous Vegas photo :)

Summer reads

2011-07-06T11:59:00.000-07:00

Since the stroke I've been determined to improve my concentration. I couldn't think of a better or more enjoyable way to do that than to read some good books. I thought I would share some of them with you and at the same time support some local authors because it just so happens that each of these books were written by people from Utah.

“The Earthsoul Prophesies” by Greg Park: This is a fantasy series that I really enjoyed. It was full of suspense and really fun to read. I’m often hesitant to read fantasy novels but I’m glad I pushed through the first few chapters because after that I was addicted. So far there are 3 books in the series and they just get better as you go. I’m very excited for the next one to come out!

“To Destroy You Is No Loss” By JoAn D. Criddle. I was required to read this book for one of my classes and was amazed by the story. It's written as a first person narrative, but is actually a biography. It’s about a family’s experiences during the Cambodian genocide. This is one of those books that stay with you long after you finish reading it. I was inspired by the strength and love this family demonstrated despite all of the horrible things that happened to them. Just to give you fair warning this story was definitely inspirational but it was also one of the saddest stories I have ever read I wouldn't recommend it for everyone.

“Matched” By Ally Condie This was an entertaining and undemanding read. It was a great book to kill an hour with or take on vacation. It is about a dystopian society which is of course a familiar subject but it had its own quirks that kept me interested. The next one comes out this fall and I’m sure I'll read it.

So there you go some cools books by some talented Utah authors. (all images found on google.com)

Da-bomb (Ambulatory EEG)

2011-06-20T22:05:00.001-07:00

I am doing a 72 hour EEG which means I get to wear this cap and these wires for a little while. I'm looking good huh? They LITERALLY glued the leads on with something similar to super glue, and plan on getting the glue off with acetone. My poor hair. Other than being a little itchy and the opposite of fashionable this test isn't too bad. They are doing it to check to see if the "convulsive syncope" I experience is is actually a seizure. I am pretty sure it is all blood pressure related and figure the test results will be unremarkable but I'm glad the neurologist is being thorough.

Since I have all these wires coming off of me and a couple inside of me I have decided that my new nickname is going to be "Da-bom" lol!

P.S. Isn't my mom cute the tech smuggled her a cap of her own so we could be twinners :)

2011-05-08T08:36:00.000-07:00

Happy Mothers day Mom! I love you so much. You are my guardian angel and bad influence all rolled into one:) We were meant to be friends.

3 Months later

2011-04-26T18:39:00.000-07:00

Yup it has been 3 months to the day since I had the stroke. How does one celebrate such a momentous occasion? I really wanted to put something funny up about strokes but there is an embarrassing lack of stroke humor out there.

Things are going well. I’m starting to get some energy back. I still blackout lots multiple times a day if I'm not careful, but I’m certainly able to do more then I was 4 weeks ago. If it is a short trip I’m able to go solo if it is a longer excursion then I use the walker or wheelchair. I even got to go to the mall the other day.

Easter was great. We had dinner with my Dads side of the family and instead of the traditional Easter egg hunt we had a piñata. I didn’t even dent the thing but my brother Dom destroyed it.

Thanks again to everyone who has done so much to keep me entertained and have blessed me with your prayers.

The family on the way to our delicious Easter Dinner

Dominic and our Easter piñata

All patched up!

2011-03-30T09:36:00.000-07:00

The hole in my heart (PFO) is now patched!

Surgery was not too bad. It all happened in one day. I showed up at 8 and got to leave a little after 5. They used a femoral line to get to my heart. This is the 2nd femoral line I've had in 2 months. I'm so glad they didn't have to crack open my chest, but I've got to say I don't find femoral lines very comfortable.

My mom LOVES pictures so she gave one of the nurses a camera.

Just before they started

This is the device they used to close the hole. It is bigger than I expected

You can just make it out on the x-ray.

They had a hard time getting around the pacemaker wires but eventually they got it where it needed to be. Before I even came to my heart started to beat irregularly. That was the complication we were most worried about. For now we are going to give it time to gets used to the device and see if it goes back to normal, or whatever my hearts approximation of normal is.

The hardest thing at the moment is my blood pressure is super low. I can't stay up for long before I black out. I'm trying to be especially careful not to fall. The doctor said not to jar the device or it could break loose, also I don't want to hit my head while on blood thinners.

Everyone has been so nice. I've got candy, movies, and books to keep myself occupied, plus before the closure a friend did glitter toes for me! (thanks Mette)

I'm very grateful for all the prayers said for me. Thank you for all the support and love you've shown me.

Bubbles

2011-03-15T09:04:00.000-07:00

I recently had a test to figure out how big the hole in my heart is. The test is called "Transcranial doppler with bubbles". They put a something like a hat on my head that ultrasounds the main arteries in my brain. Then through an IV they push some air bubbles. They use the ultrasound to see and hear if bubbles are getting through the hole into the wrong side of my heart and then into my brain. PFOs (the type of hole I have) are given a rating between 1-5 . 1 meaning not much gets through. 5 a lot gets through. I got a rating of 5+ it sounded like pretty much everything was getting through.

My cardiologists were arguing about whether or not to go through with the closure since there is a risk of arrhythmias, however now that we know so much is getting through they feel that the only option is too close it soon. The closure is set for March 28th.

The video below is what we expected to hear during the test. He said to expect 2-10 bubbles.

This next video is what we heard when we did my TCD bubble. (Warning it is kinda loud)

Cool right? I had to chuckle to myself because while they were doing the test all I could think was THIS.

Press forward

2011-02-24T16:07:00.000-08:00

I keep on keeping on. I talked to a cardiolgist about closing the hole in my heart and we will probably do the surgery at the end of March.

My speech therapy is going well I get frustrated at times but so does my mom and even the therapist... those tests are tough.

I feel pretty sick lately flu like and exhausted. Luckily I am home during this crash and not at school it's easier with my family there to make me laugh and fetch me stuff such as ice cream.

Speaking of ice cream I love candy/junk food. I LOVE IT. I feel sick much of the time but I still don't have the strength to say no to sugar in all of its delicious forms. especially ...

Cadburry mini eggs

I spent $10.00 on these fantastic morsels today and kind of wish I had bought more. The next time I will be able to buy these is at Christmas time. Do you think this candy trial is supposed to teach me patience?

Last but not least I have figured out why pirates always look like this:

"arrrrr" They had a stroke

That is me trying my darndest to smile.

My Mom and I went to Pirate Island just to get that picture :)

Foward not backwards

2011-02-16T09:04:00.000-08:00

Hello folks
Things are going pretty well. It is nice to be here with my family they are good at helping me plus the endless stroke jokes keep me laughing.

I started my outpatient therapy yesterday. My physical therapist doesn't even know what to do with me. I can do most everything that he asks me to. He couldn't believe that I had a stroke 3 weeks ago. Awesome!
My speech therapist is great she is going to help me strengthen my vocal cords, work on articulation, and my ability to pay attention. Not being able to pay attention is quite an experience for me. I have been known to study for hours at a time without a problem(just ask my roommates) now half an hour of reading a novel is a struggle. I have been working on it though and I think I am making progress.

The hardest thing at the moment is that this stroke thing has thrown me into a Dysautonomia crash. It hasn't been this hard to funtion since highschool. Luckily I have been through crashes before so I know what I need to do.

All things considered I am doing wonderfully. I'm sure I will continue going..." forward, not backward. Upward, not forward. And always twirling, twirling, twirling towards freedom."(the simpsons teehouse of horror season 8)

They call this the stroke smile

Cards from the people in my major

Stroke

2011-02-02T13:52:00.000-08:00

Hello everyone, As most of you know I have been hanging out at the U of U! Thursday I guess I didn't want to go to school so I had a massive stroke and took a helicopter ride here. About 2 days ago I was deemed stable and now I have been sent to rehab. I want to thank my roommates, my family and friends for everything you have done and are doing for me. THANK YOU! In rehab I have been doing speech, occupational, and physical therapy all day, and it is hard. I also got to mak a new friend. His name is frank and he works here at the hospital. Tonight he snuck me me a chocolate shake.
Sometimes it's hard to think about how long this recovery is going to take but most of the time I am just in awe at how lucky I am.

Comdey+Trauma = Tramedy

2010-12-21T09:19:00.000-08:00

So we got a little snow today. By a little I of course mean a ton. Anyway I decided before I do anything else this morning I ought to help my mom and brothers shovel. So I layer up (a jacket, 2 coats, 2 pairs of gloves, tights, socks and a hat...what, I get cold easy?!) and head outside. After shoveling for a while mom asks for someone to put the garbage on the street. "No problem" I think and head over to the side of the house.

I brush off the snow and start trudging towards the street. I'd trudged maybe 3 steps before slip, crunch, ouch! I had slid and fallen on the snow and had taken the garbage with me. The bin had landed on top of me and having already used up all my strength shoveling I found I couldn't lift it. I was trapped, and it was SMELLY. Um...help I said without much hope since my family had gone to the neighbors. Lucky for me it didn't take very long before Dom rounded the corner and rushed to my aid. That my friends is what Simpson's and I call a comedy+trauma = tramedy.

For the Simpson fans this experience reminded me of the time Homer Simpson gets stuck under the tractor. By the time Dom had found me I was yelling, "Move the hand break!" :)

I Heard the Bells on Christmas Day

2010-12-11T18:17:00.000-08:00

I have had this song playing in my head all day and for the first time I recognized in the text a feeling of both peace and power. For a moment I wondered how something could be both those things at the same time in my mind power and peace were opposites. Then I remembered the Savior and realized that there is nothing more powerful and nothing more peaceful. He is the The Mighty God, The everlasting Father, and the Prince of Peace.
Have a wonderful Christmas.

Tag!

2010-11-28T18:46:00.001-08:00

My Aunt Tagged me and I am finally getting around to the tag post.

4 shows I watch:

I don't have TV but I do watch MASH on DVD and If I could I would watch Criminal Minds.

4 things I am passionate about:

The Gospel

Family

Education

Ice cream

4 Phrases I say a lot:

"What are the odds?"

"Oh honey"

"love you"

"Crimeny!"

4 things I have learned from my past:

You wont usually regret being kind to someone

If you are really craving something just eat it so you don't eat everything else in you cupboards

Everything changes

You are never alone

4 Placed I would like to go:

Italy

New York

Harry Potter world

Home

4 things I did yesterday:

Saw Harry Potter 7 (LOVED IT)

Ate my favorite kind of Pizza

Did a crossword puzzle with my mom

Studied anatomy

4 thing I am looking forward to:

Christmas vacation

Graduation...someday

Buying a new box of cereal

The future in general (is that a comp out :) )

4 things I like about winter:

Early morning walks in fresh snow it is so peaceful.

Hot cocoa

Christmas

That my family gets to be together

4 things on my wish list:

New church clothes

To know what my parents want for Christmas

Cute, warm, long socks

To redo my 72 hour kit.

4 people I tag:

Jenn B.

Kelli J.

Deb S.

Chessie O.

Pacemaker printout

2010-11-11T16:33:00.000-08:00

Back on Nov 1st I sent my cardiologist all the recordings my pacemaker had made in the last 3 months. I just hooked up a monitor to a phone and put an antenna over the pacer and it sent everything to Orem where they were able to print it all out.

Yesterday my parents happened to be down at the cardiologists and were able to get a copy of the printout. And this is a little bit of what it said.

My heart rate dropped down to 0-39 beat per min (bpm) about 20 times a day
It dropped down to between 40-49 bpm about 70 times a day.
It also recorded lots of tachycardia even up to about 169 bpm. That is without exercise... um that's crazy.

So I realize this might not be fascinating to anyone else but it blew my mind. I can't believe that My heart has been doing that for pretty much the last 6 years. Why did it take so long to get a pacemaker?

Oh well I have it now and I am very glad for it. I'm for sure seeing a difference in energy levels. I feel so lucky to be have the stamina to go grocery shopping, go to 2-3 hours of school, and watch a movie with my friends all in the same day! I am still passing out and am tired since my blood pressure isn't stable. I am also having a hard time with temperature regulation and nausea but without having a ridiculous heart rate all that seems more manageable. I'm just so pleased that it's helping I can't even put it into words.

'Nuff said

2010-10-05T15:39:00.001-07:00

USU 31

BYU 16

'Nuff said!

Freedom

2010-09-19T21:43:00.001-07:00

This semester I am in an institute class that covers the history of the church. So far we haven't even gotten to the restoration we have been covering the many things that had to happen first. I have been amazed by all the different events that led up to the restoration. Last week we were talking about America and how religious freedom was key. Our teacher showed a us a quote from a speech given by Ronald Reagan and I loved it so much I wanted to share some of it with you.

Some years ago a writer, who happened to be an avid student of history, told me a story about that day in the little hall in Philadelphia where honorable men, hard-pressed by a King who was flouting the very law they were willing to obey, debated whether they should take the fateful step of declaring their independence from that king. I was told by this man that the story could be found in the writings of Jefferson. I confess, I never researched or made an effort to verify it. Perhaps it is only legend. But story, or legend, he described the atmosphere, the strain, the debate, and that as men for the first time faced the consequences of such an irretrievable act, the walls resounded with the dread word of treason and its price—the gallows and the headman's axe. As the day wore on the issue hung in the balance, and then, according to the story, a man rose in the small gallery. He was not a young man and was obviously calling on all the energy he could muster. Citing the grievances that had brought them to this moment he said, “Sign that parchment. They may turn every tree into a gallows, every home into a grave and yet the words of that parchment can never die. For the mechanic in his workshop, they will be words of hope, to the slave in the mines—freedom.” And he added, “If my hands were freezing in death, I would sign that parchment with my last ounce of strength. Sign, sign if the next moment the noose is around your neck, sign even if the hall is ringing with the sound of headman’s axe, for that parchment will be the textbook of freedom, the bible of the rights of man forever.” And then it is said he fell back exhausted. But 56 delegates, swept by his eloquence, signed the Declaration of Independence, a document destined to be as immortal as any work of man can be. And according to the story, when they turned to thank him for his timely oratory, he could not be found nor were there any who knew who he was or how he had come in or gone out through the locked and guarded doors.
Well, as I say, whether story or legend, the signing of the document that day in Independence Hall was miracle enough. Fifty-six men, a little band so unique—we have never seen their like since—pledged their lives, their fortunes and their sacred honor. Sixteen gave their lives, most gave their fortunes and all of them preserved their sacred honor. What manner of men were they? Certainly they were not an unwashed, revolutionary rebel, nor were then adventurers in a heroic mood. Twenty-four were lawyers and jurists, 11 were merchants and tradesmen, nine were farmers. They were men who would achieve security but valued freedom more.
Jan 25,1974 "City Upon a Hill" speech given at the first annual CPAC conference source: Reagan 2020 - Selected Speeches of Ronald Reagan

When I hear someone say that this country was founded with divine help it feels very much like they are speaking truth. I'm grateful to have been born in this time, in this place, and into this gospel. I wonder how it is that I ended up so surrounded by blessings?

Crafts

2010-07-30T09:23:00.000-07:00

During the summer time my mom and I often try to do a craft or two. I am putting up some pictures up of the things we have completed.

We made some PJ pants which was supposed to teach me how to read a pattern. I did OK but I'm still not very confident with patterns. (The picture doesn't do the them justice the colors are more vibrant.)

Next Mom and I put together a quilt to keep in the living room. Mom chose the fabric and it ended up matching the living room colors perfectly! I love making rag quilts.

My favorite craft was putting together this bulletin board for my room I plan on putting it above my desk. I found the old window frame at a second hand store and had to buy it! It has both magnent board and cork board and that flower is actually a push pin that my mom made cute right? Sanding that window was an experience. I was using this tiny power sander and it was taking forever. Josh said if I wanted to go faster I could use the belt sander. When I pulled the trigger on the belt sander it nearly pulled me off my feet it was WAY powerful. Josh had to take over before I hurt myself.

Pacemaker check up

2010-07-29T16:39:00.000-07:00

Hello folks. I went to the cardiologist yesterday. They were just making sure the pacemaker was doing what it was supposed to. All I had to do was sit there. The nurse put a scanner on top of the implantation site and then they could tell me tons of stuff about my heart. It was like being on a star trek episode you know how they use those funny scanners and then suddenly know what is wrong with the patient. It was pretty cool.

I really have not felt any improvements since the implantation, so I didn't think the pacemaker was doing much, however the doctor said that it has actually been doing quite a bit especially for how long I have had it.

It is set up so that when my heart rate drops down below 50 beats per minute it will speed it back up. My pacer reported plenty of times when my heart rate dropped down into the 30s. This was kind of a surprise I never knew that my heart rate was dropping so low so quickly.

So all in all I still feel sick lots of the time, but the pacer is keeping my heart rate at a good level which means they are successfully treating part of my syndrome. My fingers are crossed that we will find other things to help other aspects. For now I am happy with the baby steps we are making.

Riley

2010-07-10T09:24:00.000-07:00

That's right my sister bought a puggle puppy. A puggle is a pug and beagle mix. We named her Riley. She is about 7 weeks old and around 3 pounds. I have been getting to take care of her and love it.

She is definitely a puppy she chews on EVERYTHING including peoples hair I wouldn't put your head within her reach if I were you. When she first wakes up she sucks on fingers (and earlobes if she can get them try waking up to that eww weird.) She is so tiny that her bark sounds more like a squeaky toy than anything else, and her absolute favorite thing is to annoy our older dog Sammy. Oh man even with all her naughtiness I still think she is cute.

Cafe Zupas

2010-06-25T09:48:00.000-07:00

Dear WWW,

Brittney took me to Zupas a couple of weeks ago and I am still thinking about how delectable it was. If you like soups, salads, panini sandwiches, and chocolate covered strawberries you should check it out. I recommend the tomato soup with the ultimate grilled cheese it is comfort food on steroids. Oh no just talking about it is making me hungry.

love ya,

Charlie

Feeling good

2010-06-18T08:43:00.001-07:00

Dear World Wide Web,

It has been just over a week since I got the pacer and I am definitely starting to feel better. Also I only have 3 weeks left before I'm aloud to use my left arm normally I am trying to think of a good way to celebrate the that momentous occasion.

Today I got the OK from my doc to bathe again Hallelujah! I have been taking baths anyway but I haven't been able to wash my hair for many a day. I was desperate right after I came home and my Mom took me to her friends salon and we got it washed there.Unfortunately I haven't gotten to wash it since. Yuck.

Thanks for all your prayers and support. I'm lucky I know so many remarkable people.

This is an x-ray they took.... cool right?

Charlie

New treatment

2010-06-11T14:06:00.000-07:00

Dear World Wide Web,

I have returned to my blog to share with you some news about my dysautonomia treatment. In the last 5 years we have tried every med available, compression stockings, raising the head of my bed, exercise routines, a visit to the mayo clinic, and I gave up candy for a week on the off chance that it might help. We have tried everything except a pacemaker.

My cardiologist has talked about pacemakers before but only as a last resort. We were just talking at my last appointment when out of no where in his thick Korean accent he said "It is time for you to start thinking about a pacemaker and I will schedule it for sometime in the next 2 weeks." I think my jaw dropped.

I have spent the last 2 weeks trying to decide if getting the pacer is the right idea. It only has a 50% chance of helping me. I don't really want a permanent battery stitched into my chest with its wires dangling inside my heart especially if it won't do anything for me. They can't take it out because the heart starts to grow around it. Also any type of surgery can set dysautonomia patients back in their recovery so just deciding to do it is a risk. On the other hand if this can help me improve even a little isn't it worth it?

In the end I decided to do it. It will be implanted June 16th as long as the insurance approves it. I am nervous and I'm still not sure I have decided to do the right thing but I do believe that I will be watched over and everything will turn out as it should.

Charlie

Aggie Basketball

2010-03-07T12:48:00.001-08:00

I invited Brittney to come up this weekend to go and see the last Aggie home game. I had not been to a whole game yet and thought Brittney would feel at home in the enthusiastic crowd. We were both pretty excited to go.

See how very excited we look.

When we got there we realized we were sitting in a figurative ocean of aggie blue and both of us had on maroon. We joked about how funny it would be if the team came out and their color was red. We thought we were SO funny until New Mexico made their appearance.

D'OH!
Simultaneously we started to roll up our sleeves (isn't it funny how sisters think so similarly sometimes.) in an attempt to look like were were not wearing red. We got pretty nervous Aggie fans are not known for how kind they are to opposing teams.

See how very nervous we look

Don't worry they didn't hurt us. But wow they are hard core meanies.

We were both very tired and decided that we would just go at half time. I thought there were 4 quarters in a game and that we could go after the second one. Brittney and I watched the scoreboard and decided we would be ready to go as soon the "second period" was finished. The periods seemed to last forever. Finally it was winding down to the last seconds so we started to gather our things to leave. When to our surprise the crowd flooded the basketball court. "The game is over?" I exclaimed. We had thought periods, and quarters were the same thing and had ACCIDENTALLY stayed the whole game. How do you accidentally stay a whole game?

I guess basketball is not really our thing!

A Tribute to Josh

2010-02-13T09:35:00.000-08:00

Who put the skull on my wheelchair? Josh!

Who put a GIANT valentines day heart on the wall just for me? Josh!

Who sends me funny quotes once a day? Josh!

Who bought me a delicious apple snapple....Dom. But I am sure Josh was thinking he should buy me one.

Who always carries all my stuff into the house when I come home? Josh!

Who laughs at most of my jokes? Josh!

All the good, the bad, the twitchy.

Hey Josh thanks for all you do for me. Love you!

Shark attack

2010-01-28T06:25:00.000-08:00

Last night I had a dream, and in it I was sitting on a beach making a list of things that might be blog worthy. All of a sudden a SHARK jumped out of the water and bit my leg. I screamed until it let go then I examined the wound and said, "Yeah that is blog worthy."

Sorry for my neglect. Hope you are all well.

I learned in college...

2009-09-22T18:35:00.000-07:00

I learned in college that….

The moment you decide you need to buy a plunger it is probably too late.
If you want clean clothes then you have to hoard quarters
You will go to class and find out you know nothing, then you pass the class and feel smarter until you start a new class and find out you still know nothing.
An emergency chocolate supply is not a “if I can fit into the grocery budget” kinda thing
Your whites and colors can to mix in the washing machine… most of the time (I learned this from the school news paper)
I can live without youtube and TV (cringe) I really can
Strangely themed parties and dances are a requirement example: starch dance
You get a free drink at Costa Vida with a student ID (SWEET)
You can sneak almost any food stuff into a movie theater. Including ice cream…just don’t forget spoons
You can buy sleeping and pep pills in the vending machines
That there are not instruction on the back of the refried beans can to tell you how to cook it them
That bad potatoes smell worse than cadaver lab
Turn the quiz paper over to look for questions on the back before you turn it in.
You may have to call you teacher Dr. so and so, but they still won’t know what to do when you pass out
That memorizing a Simpson’s episode takes me a half hour but memorizing historical facts takes me a week.
You can add fillers/nonsense words into your reference/bibliography list at the end of papers because no one really reads them.
If you wait to print something at the last minute then that is when the printer will stop working
It doesn’t matter what time of year it is something in your apartment is going to be decorated with Christmas lights
That your room will get so cold that icicles form on the blinds
That church business in a young adult ward is usually handled through text messaging
Not locking your door is the same as inviting the neighbors over.
That every-year I will have to replace half my kitchen things because somehow when your roommate moved out early half of it disappeared
By the time I get a bachalors degree I could have taken a two week tour of Europe with the money I spent on text books that most people don’t read
That most people don’t read the text book and that is why I am so dang slow at homework
Walkers are considered a fire hazard and will be moved so that the rest of the auditorium can get out saftely.

It is very exciting when you get a nice click-y pen or a cute colored notebook
If you use toothpaste to fill nail holes make sure that it doesn’t smell like mint or the seasoned landlord will know.
An anatomy/physiology class is more like a foreign language class
Sometimes you just have to go to the bathroom at school because you know there won’t be toilet paper at home
That as soon as you get brave enough to flirt with a guy you will probably find out he is married
When your cell phone rings in class it will take you 3 minutes to find it and one minute to get it to stop
If you want to kiss a stranger the school holds a party to accommodate you.
That you won’t die if you pass out and fall down old main hill….the trees will break your fall.
That packages from home will make your day even if your only two hours away
You shouldn't worry at the end of the year you will find all the food that you lost in the fridge…yuck

Back at School

2009-08-23T16:52:00.001-07:00

I have moved back to my apartment. It was exciting to come back but hard to leave home. I always have a difficult time leaving my family and being so far away. You would think I would get used to it but I never seem to get over missing them.

My apartment is great there are only 4 girls all of us with our own room and only 2 to a bathroom. This summer mom and I made a hobby of preparing things for my room, and I love how it turned out. I took some pictures but they hardly seem to our hard work justice. If you really want to see how lovely it is you will have to come up and see it in person.

I got these shelves at Savers and painted them black to match the rest of my room. I think they look nice and gave me a great place to put my family pictures

It got my bed spread and curtains from Ikea. (I LOVE IKEA) I made the red throw pillow.

Recognize that desk it is my favorite part of the room. The mirror above it is also from Ikea.

Mom bought this vinyl wall quote and put it up for me as a gift. I love how it looks and like having a reminder to be more faithful.

Thanks family for helping me move up come and visit me soon. ;)

Painting Pains leads to Desk Delight

2009-07-31T11:06:00.000-07:00

I have taken on a number of projects to help keep myself busy this summer. The one that I am most proud of at the moment is a desk that I made for my room.
My Mom had discovered an old fashioned sewing machine in our shed. It was old but not worth much as an antique especially since it was so beat up. It seemed like it would make a great desk for my room up at school. So I had Dad remove the sewing machine, patch up a large hole, and put a shelf in. He left the making it pretty part to Mom and me.

As you can see to make that pretty was ambitions, possible leaning toward insane. Truthfully the sanding, priming, and first few coats of paint went without so much as a hiccup and quicker then I could have imagined.

When we finished Mom and I had found this can of spray paint in the garage that said it was clear and would seal and protect our paint. Great we thought. Alas when we sprayed it on it most definitely was not clear. It was a cloudy white color, and made the carefully sanded, smooth as glass surface feel like those scratchy kind of welcome mats people have by their front doors. D'oh! We ended up sanding and painting all over again. After two more painting mishaps (both too depressing and complicated to explain) and a knob installment problem I have a final product that I am almost sinfully proud of.

I am glad it is done. After I forget how difficult it was I think I would enjoy doing something like it again. I figure I already made almost every mistake possible. My skills can only improve from here on out.

Fainting Humor

2009-07-21T10:59:00.000-07:00

This made me laugh hope you enjoy it to.

How to treat a fainted person.

Summer update number 2

2009-07-14T11:25:00.000-07:00

Hi everyone. Lots has happened since my last post so I am just going to try and hit the highlights.

Number One: Summerfest...

We got to see fireworks,

Camile and Josh went on carnival rides,

Brittney and Dominic performed with Acting Up.

Number 2: Trip to Idaho...

We got to see lots of family some came all the way from Virgina (Shout out to Nathan, Aunt Samee, and Anna!)

We went fishing on two really beautiful lakes.

We did lots of boating, river rafting, and swimming even Sammy got in on the action.

Thank you Grandma and Grandpa Gardner for a wonderful trip, and congrats on 50 years of marriage.

Number 3: 4th of July...

We went to a BBQ at my Aunt and Unlce's house and watched some great performances at cul-de-sac of fire.

Last and least interesting I went to the cardiologist and nothing new happened. He said if I moved to Hawaii for the lower altitude and more consistent temperature, took a 6 month break from school, and tried some compression stockings then maybe I would feel a bit better. We are going to get the compression stockings this week. If any of you are moving to Hawaii and want some company let me know ;)

Summer happenings

2009-06-03T19:14:00.000-07:00

Hey everyone. So finals went well and I have been home enjoying some R&R. I have not done anything too exciting.

I have been taking a lot of naps lately which means Sammy our poodle/yorkie mix has been following me around everywhere she had been my little shadow. I love it and wish I could take her back to school with me.

I have gone to soccer games that Camile played keeper in. She is a great goalie and sometimes makes some pretty miraculous saves.

I went to see lots of show done by all the Scera youth so Brittney, Dominic, Joshua, Camile, and even Caleb my cousin were in them. They all did really well. I love watching there shows even if sometimes they are a little long.

My Aunt and Uncle went on a trip for a while which meant I got to spend some time with my cousin David at the end of our time together we got to go to Special Olympics where David and his softball team won a bronze medal. Woo go David!

Finally I have seen 3 movies "Up", "Wolverine", and "Star trek". I loved all of them. There are not very many movies that I don't love though so don't trust my opinion. Thank you Dad and Joe for taking me.

Final weeks and finals week.

2009-04-19T17:48:00.000-07:00

That picture is pretty much what I am going to look like the next little while. I have lots of studying to do. I have two week before the semester is over (WOO-HOO). I am very ready for summer to be here. I just have to finish finals and move all my stuff back down to Orem. Sorry about the lack of posts lately. Honestly I probably wont post again until finals are over. See you in two weeks.

Spring break highlights

2009-03-15T15:21:00.000-07:00

It is the very last day of my spring break today so I thought I would give you the highlights

I cut and colored my hair. I would post a picture but didn't like any of the ones I tried to take so you will just have to come see me in person. It is not a big change it is a bit shorter with layers and colored a darker brown I like it very much.
My stinking computer died and I spent a small fortune to buy a new one. I really feel like being a grown-up and having to pay for all your own stuff is not as cool as I thought it would be. On the bright side a lot of people helped me out with my new laptop. Especially Uncle Duff. Thank you Uncle Duff!
I did almost no studying over the break which I am kicking myself for now.

I did lots of eating. Mom takes such good care of me. I much fatter now.

Finally I promised Dad and Dominic that I would blog about this so here it is. Dominic and Dad came to drop me off so Dad could help me do the final computer set up stuff. As Dominic went to go get something out of the car he yanked the door knob out of the door! The metal was so old it just sheared off.

Leaving us with nothing but a gaping hole into which any stranger could peep.

We filled the hole temporarily with our finest TP

and put a note on the door saying "Please knock the door is locked"

Luckily Dad was here to fix the door if he hadn't been we would have been stuck with TP door for the rest of the weekend.

Sunday Sweets

2009-02-16T08:39:00.000-08:00

As many of you know doing things in front of a lot of people makes me a bit uneasy. I worry and complain the whole time. When I found out Saturday afternoon that on Sunday My roommate Kelli and I would be in charge of feeding the whole ward "Sunday Sweets" at our apartment I couldn't help getting nervous. Right after church the baking madness began. I had decided on Chocolate chip cookies (classic) and Poppy seed bread (one of the only things I can cook well.)
Problem number one: My cookies started to turn out nasty looking. My roommates tried to be nice and kept saying, “at least they taste good", sure they tasted fine ,but they looked awful I am not even sure how to describe it. It is like they had to much oil or butter and had turned a little translucent ick. I didn't know what to do because batch after batch they were coming out all wrong and getting stuck to the pan and just being little chocolaty pains. My bread turned out fine though and I just didn't have the ingredients, time, or energy to make something new.
Problem two: Clean up. By the time we had finished baking the kitchen looked like two monkeys had been given an open bag of flour and a carton of eggs. We cleaned as fast as we could but just couldn't finish in time so some of the dishes ended up in my bathtub.
After throwing the dishes into the tube, shutting the door to my room, and putting a life-size cut out of Jack Sparrow in front of my door to guard it. We were done and ready for everyone to come over.
Problem 3: 3 day weekends. We hadn't really thought about how it was a three day weekend and had made 2 times the amount of food we had needed. We forced everyone to leave with handfuls and napkin piled high. We still ended up with LOTS more food then we had thought we would.

(After Sunday sweets)

Just trying to be helpful I thought I would eat some of the rice crispy treats in milk as cereal...
It was not bad at all. At least now treat night is over and we don't have to deal with it again till next year. Oh yeah I forgot My questionable cookies were a hit. All the guys who came over didn't even look twice. I didn't see many girls take cookies though. Guess they knew better.

Dysautonomiac of the month

2009-01-31T13:16:00.000-08:00

As many of you know I am a member of a group called DYNA kids it stands for Dysautonomia youth network of America. They have members from all over the world and most of them have the same type of heart condition as me. This month I was chosen as Dysautonomiac of the month. Meaning they send "my story" out to hundreds in their news letter and sometime soon will post it on the website under the link stories. I have posted part of the news letter they sent out below so that you guys could see it. I also thought I would take this opportunity to say thank you to all of you who help me get around and put me in your prayers. I am very grateful to all of you. (I am warning though it is a long story.)

DYNA FEATURED YOUTH MEMBER:
Charlie P.UtahJoined DYNA at age 19
Charlie’s Story
My name is Charlie. At the age of ten I passed out while climbing a tree. I fell twelve feet and broke my arm. While I was in the hospital getting my arm set the doctor noticed some abnormalities and sent me to the cardiologist. I was diagnosed with Atypical Neurocardiogenic Syncope. My symptoms at first were mild, and I continued living as actively as I could. I assumed that things would stay that way. I was active in theater productions, was on Student Council, and was a competitive fencer. I was on the first all women's fencing team in Utah and medaled.
The summer before my junior year of high school I got appendicitis and never fully recovered. All of a sudden I was unable to stand without fainting. I had extreme tremors, brain fog, headaches and fatigue. The school decided I was too much of a liability and put me on home/hospital tutoring. I didn't have the energy to do physical activities like fencing anymore. Since I was not in school, I rarely saw my friends anymore. I was able to concentrate my efforts on my schoolwork though. By the end of high school I not only obtained my diploma but also a certificate in Phlebotomy and Medical Assisting.
My parents have been wonderful. They've helped me study through brain fog, and they have taken me to countless doctors' appointments and have always been supportive. They have had to fight school systems to obtain fair accommodation for me. They joke with me when things are hardest, and they are constantly looking for ways to make my life as normal and easy as possible. Thanks to the support of my parents, siblings, and extended family members I am doing so many things that I didn't think were possible.
With some accommodations, I am living on my own and am attending Utah State University. I am currently able to take 9 credit hours. I fall (literally) all the time but I always get back up and keep going. I have a great roommate who on bad days has lain on the floor with me eating salty chips. She is willing to drive me places, and scoops me off the floor at stores and restaurants. It isn't easy to find friends that aren't embarrassed or scared by this and I feel lucky to have her.
During my first year of college on a particularly difficult day I stumbled across http://www.dynakids.org/. I had never really met someone else who had been affected by dysautonomia as severely as I had, and I instantly felt comforted by the mere fact that I was not alone. Being a member of DYNA has changed how I look at dysautonomia, has helped me become more educated about my condition, and has given me hope and reassurance in times of need.
Having NCS has turned out to be more complicated, expensive, and life altering then any of us thought it would be. Even though I have been sick for about 4 years now I still miss doing the things I used to do. However, with the bad - has come good. I’ve had the chance to experience the best in people as they offer to help me. I have learned how sweet it is to go on a walk, and I could never doubt that my family would do anything for me. I am blessed.
Learn More:http://www.dyakids.org/

Donations to DYNA can be made at: http://www.dynakids.org/ via the Justgive.org link. No amount is too small to make a difference

New Car!

2009-01-25T14:29:00.000-08:00

Hey guess what I got a minivan. I would tell you the make, model, year, and all that but I can't remember any of it. I do know that it is red, has numerous cup holders and a CD player. Also I can use the wheelchair ramp with out having to use the wench which is the main reason I got it. I am going to miss saying "just a sec let me pull the wench out of the trunk" though. ;) Dominic and Dad came up today and had to switch everything over there were some crunched fingers and near cursing, but they made it work I got to practice going up and down the ramp I tried to ride the chair all the way into the car but nearly decapitated myself and have decided walking it up is going to be the best way to do it.

All I have to do now is name her/him. I can't think of any names that I like. I was hoping to get the help of all you creative people out there. Please feel free to post some suggestions.

Birthday "Potty"

2009-01-14T20:54:00.001-08:00

I am posting an English paper I had to write not because it is particularly good but because It is a favorite memory of mine plus dad was able to find the perfect picture to go with it. I am sure most of you have heard the story before though.

“No one’s getting cake until they do it.” Mom taunted. The Guests grinned. This is exactly what they would expect from my mother. I found a pair of underwear I approved of and tried to protect the rest of my unmentionables from the frantically searching guests. I had settled on 100% cotton, with magenta and green stripes. Tasteful, not too granny panty, but not anything a guy might whistle at. I fit them onto my head like a bandanna. I then helped the youngest pull her ponytail through the leg holes in her underwear. My brother Dominic had forced his unfortunately sized chin through the leg of some plaid boxers. The other leg hung off the side of his head like a flag. My cousin Jobba had found a disgusting pair of whitey-tighties, and wore them like a French beret. Mom of course, pulled her pig-tales through the legs of a thong.
Shockingly fast our “potty hat” clad guests were ready and waiting by the front door.
“One time around the block yelling it is a birthday potty!” Mom declared. She opened the door and literally leapt down the sun-soaked driveway.
“It’s a Birthday Potty” echoed off the peaceful streets. Our bare feet smacked the sidewalk in unison as we jogged. Our laughter was probably as loud as our yelling. I couldn’t help but giggle, even though the laughing was starting to make my sides ache. As our troop passed a group of my schoolmates I tried to avoid their bulging eyes, and pumped my legs a bit faster. “Hey mom,” I said, “next year how about a nice piñata.”

I have a bone to pick with Anatomy class

2009-01-09T16:37:00.000-08:00

I went to my first Anatomy Lab today. Talk about an experience. First off it is held in a room full of dead people which wouldn't bother me except that they use them as desks. Everyone’s books and the bones they were studying were all laid out on the nearest cadaver. My desk is a 51 year old named Bethany... Creepy right?
Next the amount of info they threw at us today was overwhelming. They point to small holes in the skull and say. What is this holes name? I don't know it looks exactly like all the other holes! We passed around skulls and ribs and vertebrae which were way cool but they have a million different parts with the weirdest names that we are required to know how to spell.
Oh and the cherry on top of this sundae is that to get up to the cadaver lab in the wheelchair or with the walker I have to ride in the cadaver elevator. It is the only elevator they have. It is the most foreboding elevator ever with a HUGE sign in it that says “No passengers Freight Only” The door doesn't even open automatically and is so heavy I had to get help to open it.
If anything this is going to be an interesting semester.

Double Dog Dare!!!

2008-12-19T18:29:00.000-08:00

Last night Dominic (my 15 year old brother) dared me to let him bury me in the snow in a short sleeve shirt. I just couldn't find it in me to say no, and believe you me it was COLD!!! After I dug myself out I was stinging for a good 5 minutes.
I dared Dom to sit in the snow with bare feet for a minimum of two minutes. To my surprise and great amusement he did it, and only cried a little. (Ha-ha just kidding Dom!)

PS The first picture is of me putting my head in the snow that is how this all started.

A heart to heart with my cardiologist.

2008-12-16T16:11:00.000-08:00

Hey everyone I am home for Christmas Break finals are over and I love being home with my family. The Holidays are the perfect time for me to catch up with all my Doctors. I met with my cardiologist today and I thought I would fill everyone in what is going on with me and my dysautonomia treatment.

With the help of my doctor and my parents I decided not to get a pacemaker at this time. It is going to be something we do as a last resort. They are easy to get in, but have a low success rate for dysautonomiacs. Besides they are pretty hard to take out because your heart starts to grow around it. We are trying one new medication (hope it helps), but nothing else is going to change. He told us as he has the last few visits that I just need to learn to live with it, and adjust as best as I can. So that is what I am going to do.

I do Finally have a wheelchair ramp on my car. My dad did some seriously tricky work on it to get it to be what I needed. I love it and am pretty sure it is the most tricked out ramp around.

If anyone really wants to learn more about dysautonomia you can click on the links I have to the right or you can ask me.

Roommate Christmas

2008-12-12T19:24:00.000-08:00

Hey everyone look at me I am blogging. This is very exciting. For my first topic I thought I would share with you some of my roommate christmas party photos and if it works movies.

In order of apperanceKelli, Jenn(she just moved), Jessy, Jen, (they are sisters), and Courtney.

Here we are all enjoying Courtney's gift. We had a gift exchange, homemade pizza ,and sticky buns...mmmm so darn good. We had lots of fun. Hey guys lets do this again some time.