Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest? Luke 12:25-26

Monday, April 22, 2013

I spoke too soon.. Vertex update


This is a great article.  It explains things relatively simply (maybe only mildly because I understand the lingo) and touches on everything from the stock jump to the study results.

I'm pleased. Yes, just pleased.  I'm petrified.  But ecstatic.

Did you watch Zero Dark Thirty?  At the end of the movie, when the red haired lady was in the plane and had accomplished her goal that it took most of her career to do, what did she do?  She cried.  The thought running through her head is "Now what?"  That's the best way to describe finding a cure.  Now what?  Everyone is always saying "be excited! Live your life! You have a cure, or something so close to it!" And that's more amazing than I could ever describe in words, but I've literally wanted a cure since I was old enough to understand what was going on... so then what?  It's ok if you don't get it.  You don't have to.  But I do.

However don't mistake this feeling for disappointment or unhappiness because it is the total opposite.  I couldn't be happier.  But I'm terrified.  Just know that.


Thursday, March 7, 2013

Long time, I see.

In reference to the post below, I still haven't seen the results.  It's been almost a year.  I still remember that day-- I curled up on the floor of my apartment and cried.  I should have remembered that science takes forever.  Not their fault, I understand that.  I just should have known to not count those chickens just yet.

Hello world! I don't post much for a few reasons but primarily because I grew tired of it.  Occasionally, like today, I'll decide the posting isn't sure a tough thing to do.  It's nice to be heard every so often.  I do have a second "blog" for my personal thoughts and feelings. Things that don't need to be shared with the world around me.

I also don't post as often because a lot has changed in 10 months (shocking, right??).  I moved home in June of 2012 and finished out college commuting back to my college town.  I also took a few classes from home and held an internship at a local gym for the final two quarters of college.  Then, on Nov. 17, 2012, I graduated college early by two quarters.  *high fives all around*  Backing that time-table up about a month, I also started a "big girl job" in mid-October.  After I graduated, I went on a graduation cruise with my mom, and began working full time (8-5, M-F) the Monday I came back from my cruise.  Very exciting, very busy.

I also shifted away from the blogging world with my new job because, like a fellow blogger (Unknown Cystic), I don't want to put my career in jeopardy just because of my health.  The internet is an incredible thing, but has the potential to ruin lives.

I also recently turned down the chance to be a local "face of CF" as a part of a really great fundraiser locally.  I've supported and attended the gala they host when I'm able to, but this would have made me the key speaker and face in the media.  I was all for it until I was employed.  I'm sorry, but I just can't.  I was a recent speaker with my mom on the Mother/Daughter Perspective of CF for local CF families hosted by my clinic.  It was a great event and we had fun doing it.  It's on YouTube.

Speaking of YouTube, my work did a Harlem Shake video.  We're the first in our industry to do one and the other companies got called out by observers.  It was tons of fun.

Ironically, after noting that I would like to keep my job despite my genes, I'm home sick today.  It's the first full day I've taken off for feeling UGH.  Remember all that belly pain I've had since late elementary school? It still haunts me.  I actually had a recent colonoscopy to see what was wrong.  Verdict? "You have a normal colon. Nothing is wrong with you."  WRONG.  Just because we can't see or determine the problem does not mean nothing is wrong.  The highly respected doctor who performed the colonoscopy suggested it might be my diet.  I mentioned this to my CF doctor who scoffed.  "Doubtful."  Still back on square one, in pain and still "nothing wrong."

For the record, I cried before my colonoscopy many times.  Was I afraid? Was I in a lot of pain? No and no. I was HUNGRY.  I was waiting for them to put me to sleep and tears are running down my cheeks.  The nurses were great and worked to console me letting me know that there is nothing to fear and it will all be over soon.  I just looked at them through my teary eyes and said "I'm not afraid, I'm hungry.  I just really want to eat."  I'm not sure they quite knew what to do with me.

Think about it! I couldn't eat for 24 hours.  ME.  Or drink Dr. Pepper.  ME!! I had a lot of juices to choke down the solution to "clear me out."  I got so physically sick of sweet drinks that I started sucking on the cajun sweet pickles that my mom makes at Christmas time for some spice.  Sad, I know.

Recent doctor visit revealed that I would benefit from some IV antibiotics, but it wasn't an emergency.  I made a deal that she let me wait 6 weeks and be reevaluated because I was beginning playing soccer again and running once more.  I was making a serious effort to improve my cardiorespiratory health and I wanted to see if that would help before we made any decision to send me to the hospital.  I've been running every day since.

My running partner, aka the boyfriend, has been great.  When our work schedules allow us to run together, he meets me at the gym closest to me and we run.  He gives me the push to keep going without pushing me to a breaking point.  I've also lost several pounds over the last few months and he's declared that I'm going to eat as much as he does, if not more.  We'll see how that works out!

Speaking of the boyfriend, all is well in that department.  ("well" is the understatement of the century, actually.)  We're extremely happy and things just make sense.  It's nice when your best friend is also your boyfriend. :)

Speaking of friends, one of them (aka Emmons) is turning 21 in August and someone in her family got the great idea to have a serious celebration... IN VEGAS.  Come late August I will be flying out with her family for a 21st birthday party in Sin City.  I'm sure there's nothing that can go wrong.. haha!

Two of my other close friends are getting married in November.. on the same day... in different cities! Bummer! I'm very excited for them both and can't wait to celebrate with them!

On that note, I think that's all the updates I've got so far.  Well, I'm sure there are plenty more, but that's all I've got for today. One more reason I don't blog, before I forget: I spend all day at work at a computer.  I really don't want to get on my home computer once I leave.  It's just not appealing to me.