Skip to main content

2013: The CF Walk & update!

CF Walk 2013 HollowayVille:

The CF walk went amazing! I had a team of 32 people and we raised around $3,000 for the Cf Foundation! The walk was at a location pretty close to my hometown, which worked well for my family and friends! I had so much fun and feel so lucky to have so many people who care about me and what happens with research for Cystic Fibrosis.








Surgery:

I'm all scheduled to have my surgery tomorrow. It has been cancelled twice since March due to my getting sick or having medical problems come up. And once again, I now have some sores in my mouth and on my lips(just like I did when I got that virus/thrush in March). So I'm pretty sure they won't be operating on me tomorrow. I called Dr. Boas and now I'm just waiting for a response. I'm not sure what they will want me to do. As long as it doesn't get worse I shouldn't have to be hospitalized. He will probably order some meds for me and we will see what happens!

I'm so bummed, I really just want this surgery to be done with, what horrible luck. If the surgery was done I could recover and be back to my old dancing/jogging self. Its hard not to lift heavy objects, run around, or dance. I want to work on my lung function and overall health, its hard to do I'm limited with activity, etc.

So I will just wait and see what happens. I can't take off more time from work this summer. I will probably end up pushing it off until this Fall. Frustrating.

I have been doing all my meds though, and will continue to keep up with them. I made the promise:

As of right now, I owe all meds through Sept 28th. If my Team's final amount does reach $3,000 then I will owe all meds through November 7th!
So thanks to everyone donating I will hopefully be one very healthy girl soon! :-) Love <3

I will blog some updates on surgery and final amount raised tomorrow.

Comments

Popular posts from this blog

Close to a Cure?!?!?! and Thank You!!!!!!!!

Help Us Find A Cure & Thank you! Lots of new meds and treatments are being researched thanks to the CF Foundation and the people who support it! Thank you soooo much everyone for supporting me and the CF GreatStrides Walks! I hope you enjoy hearing about the cool new ways steps are being taken towards finding a cure for CF and how everyone has helped me and us (the cf community)! New Treatments And Break Throughs: As you may know, from reading my last couple blogs. Some exciting news was released!  VX-809 + Kayldeco Phase 3 (6 month clinical trials) has started! Which means if all goes well, this could be on the market in the next year or two. This drug helps target the actual faulty gene. It will help improve our lung function (hopefully gain some back, the part that isn't damaged) and will help us to slow the decline of our lungs health tremendously! This is the treatment for my mutations!To read more about this new treatment click Here! Also, there are other medic...

First blog: Hello

My first Blog: A little About Me I'm not sure why I have decided to start a blog, however, here I am.  I have honestly thought about writing about my life for years, but have always chickened out. I have finally decided to share the experiences life has thrown at me. The biggest reason I have been asked to blog by people is because of everything I have dealt with medically. I have Cystic Fibrosis and a few other medical problems...This is probably the best reason why I should blog. I can relate to others who are dealing with medical problems, however,my CF is also why I did not want to write this blog. CF can be embarssing and annoying sometimes... but it  has helped define who I have become to be as a person. Therefore, (yes, even though I want it cured) I don't hate having CF. Let me start off with some basic info and statements. I'm 26 yrs old and have dealt with CF all my life. In this blog you will hear recent stories (good, bad, embarassing); a...

Craft Show and Work.

Craft Show This Saturday is the Craft Show! Mom and I will be selling our stuff there! It's at Liberty Village in Princeton from 11am-2pm! Please come and see all the booths! There will be 20 booths, kid's bouncy houses, games, prizes, raffles, etc. Proceeds from raffles, etc help give the residents of Liberty Village Christmas gifts and a Chirstmas Celebration! I'm excited to do this craft show, I remember going to them when I was younger! I loved it! Mom would take me along and I really enjoyed spending the day with her and looking at all the crafts! Mom is selling lots of hats, some purses, pouches, a couple blankets, teddy bears, etc. I will be doing my usual picture frames, notecards, etc. I will also be selling Michelle's My Bubble Products! To see some products: A Few of Mom's products -> Click Here!     Michelle's My Bubble products -> Click Here!      My mom said she is going to set aside a portion of her profits to ...