Saturday, September 24, 2011

Taylor Swift

Just 4 days until Taylor Swifts concert!! I am so excited! She is one of my absolute favorites! I went to her concert two years ago, she is the best performer I have ever seen!

I've been hearing that at all of her concerts this tour she has brought other singers up on stage with her, like in Nashville it was Tim McGraw, Andy Grammar and a few others. It'll be itneresting to see who she has with her for Salt Lake, speculation is David Archuletta. Guess we will see!

Friday, September 16, 2011

Walk to Cure NF

On Saturday Oct 1st there will be a NF Cure Walk for the Childrens Tumor Foundation In Salt Lake City.

First off I have to say I am horrible with words. so Hopefully I can put this all into words for you to understand.

I have suffered from Neurofibromatosis for most my life. I was diagnosed with the NF type ! when I was just a couple months old.  When I was about 6 I started to get migraines all the time would I would pass out from. It became routine for my friend in the neighborhood to have to run across the street to my house to get my parents because I had collapsed again! Doctors ran all sorts of brain scans and tests and nada. They couldn't find anything.

At this time I was also suffering from lots of ear aches and infections, so it was decided that I needed tubes put in my ear. It was during this surgery that it was discovered that I had a tumor growing on my cranial nerves. From here we went from doctor to doctor and test to test to see what could be done. all this while the tumor is growing like crazy. NF is a fairly common disorder. But the places where my tumors were located were uncommon. Doctors couldn't find anyone with the same growths as me, except for an older man in France.

By the are of 7 I wasnt given much hope of surviving. In fact i was given less than 6 months.

At one point I was hooked up to a morphine pain pump at all times. I had a feeding tube and a lot of the time I had to use a wheel chair or was basically bed ridden. I had a Broviac Catheter that a nurse would come every few days to switch out the needle. One time she sneezed on the area and didn't clean well enough and I got a major staff infection that almost killed me and I had to be rushed into surgery to remove it and they replaced it with a central line.

One day, my pain pump malfunctioned giving me way more morphine than my body could handle. We were getting ready for a doctors appointment when I collapsed. My mom called 911 and when they got there they asked my mom if she even wanted them to work on me because I was basically already gone. While they were reading the machine to see the doses I had been getting, it turned out my doctor  had been overdosing me on the morphine for a while. I had been taking daily doses that were more than to call a large horse. Even tho I did need it for the pain, I  had been taking  such large doses of it that I had become severely addicted to the drug and had to be taken off of it cold turkey (if any of you have ever tried to overcome an addiction, you know its hard, try doing it when you are only EIGHT).

After that my mom fired all doctors and  had  the feeding tube and central line removed. I'm now 24 and I've since then have seen specialist sparatically through out the years. But they all say the same thing. Nothing can be done. One doctor even took it to a convention where every other surgeon there agreed it would be to risky to operate. Id most likely die on the operation table, my air way is to obstructed so there is no way to intibate. Id have a seizure or bleed out. And even if they could operate the tumor is growing off important nerves, in order to get all of the tumor they would have to cut into the nerve, Id be paralyzed. Or if they missed any little piece of tumor it'd grow back large than it was before.

So I basically just have to live with this hope that they can someday find a cure. I probably won't be around long enough to see that happen, I know this. My last MRI results weren't good. I try to live as normal of a life as possible, I just have to take extra cautions with everyting I do. I can't get bumped in the head or neck because the anyursms in neck could burst easily, quickly killing me. Little things like catching the flu become instantly life threatening. Last time I had the flu, I got so sick so fast and they couldn't find a pulse. They had told my parents I was dead.

Im not the only one that this has been hard on. My family has sacrificed so much for me because of this. We have moved numerous times, selling homes and vehicles to pay medical bills. My family has done with out vacations and extras because I was to sick or we could never afford it. My brothers weren't able to play on little league teams and had to give up lots of the extras that their friends had. This has affected them too.

NF is just as common as cancer. But at least with cancer there's a chance to be cured with chemo and radiation! With NF there is NO cure, even if a tumor can be removed, NF is still there, it never goes away. And for most NF patients having a tumor removed isn't an option.

If  all I can do is help raise money so that someone else doesn't have to go through what my family and I have been through than at least I'm doing something to help. So please, come join in this walk. And if you can't please consider making a donation. Invite everyone you know to join the facebook event I created and encourage them to make a donation. Even if you only make a one dollar donation its something! And it'd mean the world to me!

Click HERE to join my team or HERE to make a donation to help find a cure for this horrible disease!  Even just donating a dollar is doing something!

Wednesday, September 14, 2011


“This life is what you make it. Not matter what, you're going to mess up sometimes, it's a universal truth. But the good part is you get to decide how you're going to mess it up. Girls will be your friends - they'll act like it anyway. But just remember, some come, some go. The ones that stay with you through everything - they're your true best friends. Don't let go of them. Also remember, sisters make the best friends in the world. As for lovers, well, they'll come and go too. And babe, I hate to say it, most of them - actually pretty much all of them are going to break your heart, but you can't give up because if you give up, you'll never find your soul mate. You'll never find that half who makes you whole and that goes for everything. Just because you fail once, doesn't mean you're gonna fail at everything. Keep trying, hold on, and always, always, always believe in yourself, because if you don't, then who will, sweetie? So keep your head high, keep your chin up, and most importantly, keep smiling, because life's a beautiful thing and there's so much to smile about.”
Marilyn Monroe

Monday, September 12, 2011

Backstage at Flatts Fest!

Yup I totally won backstage passes to meet RASCAL FLATTS! How cool is that? Seriously?! It was a text in contest from Z104 (formerly the Cowboy). I sat there texting them over and over trying to win the pass! They announced that they had text the winner so I checked my phone and nothing. We waited a few a minutes to see if I'd get one but didn't so decided to just go into the concert. As we were walking they announced again for people to check there phone to see if they'd won. I said to my friend "I just want them to text me and tell me I've won." As soon as I finished saying that my phone went off and I received the following text "You are the winner come by the z104 tent and show this text" I FREAKED! (for those of you who know me, know that Im a fairly calm person, so the scream and the squealing was not something normal. Im sure I freaked out everyone around me) So Jackie and I booked it back to the radio stations tent and showed them the text (where the DJ said to me "I should have known that was your number!" Ha ok so I win alot of concert tickets, but never beackstage passes) I was lucky enough to win TWO passes so my friend could come with me!

Weren't allowed to take our own pictures or get autographs but they had someone there taking pictures for us and they were uploaded that night so we could get it. It turned out pretty great! The guys were way sweet! It was so exciting to get to meet them! And the concert was a blast! I'll write about that later!

Thursday, September 8, 2011

Never Again.....

Will i eat at Iggys in Centerville! Last time I went there was a disaster! Our waiter was friendly (which is rare) but a complete scatter brain! The food was decent. But Monday morning (We went on a Saturday) when I was checking my bank account, I noticed my bank account was over drawn by .04 cents (which Im always way careful about. it always gets WAY close but i never over draft). The stupid server had charged my card for $8.90 MORE than I had signed for. Seriously!? I was so ticked!!! So I called and spoke to a manager and she was super nice and kept apologizing (she called me a couple times to keep me updated on fixing the problem) and told me she couldn't authorize a refund but the general manager would be in the next day and he would call me first thing and take care of it. So the next day I don't get a call so at 5 that evening I call and the general manager isn't in. So i talked to some other manager named "Rich" who was basically a jerk! He didn't apologize once, rushed to get me off the phone, and was just like your money is here whenever you want to come get it.

So I went in the next day and talked to another manager (Seriously, how many "managers" do they have) who gave me my money back and told me the general manager would be calling the next day to apologize. Yup no phone call. No apology. The whole situation should have been handled a lot differently I think. So I won't be going back to this location. I love Iggy's food. But the service and management is junk!

So if you ever go here. Take cash.