Tuesday, December 30, 2008

R.I.P

rest in peace Myka
  Breathe easy

Not much to say, mourning the loss of another true fighter. 
Granted i never knew Myka, but there is a feeling of loss.

This is a sad day.



Sunday, December 14, 2008

It's been a while

It's been a while since i wrote, sorry everyone.
 I started IVs...I'm not feeling well. Had a couple bad nights coughed up some blood, started IVs and now it's just getting use to the time schedule now. Thank fully so far it's only 3x a day, but that could change. I'm hoping this will all work out good and maybe i can go a lil while without the juice.

Things are shitty other wise;family drama. It never seems to fail that at some point drama can ruin the whole Christmas spirit. Sadly Christmas this year will be different for me in many ways some good some bad. Some I'm looking forward to and well some I'm....dreading. I get to spend Christmas eve with my new family the Fisher's and my other family is well....let's say turmoil is putting it lightly. This year i gained new family but at the same time...I lost family.

Family quarrels are bitter things. They don't go by any rules. They're not like aches or wounds; they're more like splits in the skin that won't heal because there's not enough material
 -f. Scott Fitzerald 

thats all for now x0x0x

Monday, December 1, 2008

As i get older

As I get older I realize that taking care of yourself is ALOT of work. How just the help of a mom or dad is a huge factor. I'm starting to  be 100% independent and people, it isn't easy. I applaud all of you who do it so well. How do you handle the transition? I'm struggling, and I'm not sure why i have such a struggle with this issue. Don't get me wrong i do my treatment's make my pills make doctor appointments everything but when I am in the position to slack I do. I try not to be a burden to anyone around me and i feel that is my downfall. 

On an update notice i had an appointment in Santa Clarita with my Infectious Disease doctor and a lot is depending on some tests I had done. mostly the A1c and hopefully that will come back and show that my 90 day isn't to bad. I feel in my heart of heart's that I'm destined to have CFRD its just a matter of time.  
 
 Today was a good day and I'm thankful regardless of what the tests show. 
  but  just in case keep your fingers crossed for low numbers ;)
  

Thursday, November 20, 2008

well I'm glad to report that after my feeding i tested my sugar level and it was only......103!!! 
 This is exciting news because with all the numbers i have gathered i think maybe i do not have CFRD. lets hope.
Tomorrow is going to be fun, I'm going to the class room i volunteer in (yay room 11) and start redecorating for winter and Christmas, So that's what I'm doing tomorrow. Also start packing for my thanksgiving trip. we fly out on Tuesday but were sending all our stuff up with Matthew's parents and also all my treatments and stuff up on Tuesday with his grandma, that will make flying easy.
I will post again before i leave so don't worry.
Also please keep these friends in your thoughts
 Nate and Tricia ( Http://www.cfhusband.blogspot.com )
 Megan Payne    ( Http://www.caringbridge.org/visit/meganpayne
 Phoenixs Fight ( http://phoenixsfight.blogspot.com/ )
 Christina           ( http://www.geocities.com/debgabehart/index.html

Everyone i have listed above are people i read about and i think you should read about them too they all are such amazing people and there story no matter what it is will give you hope. Tricia and Nate are so positive. Megan Payne, man o man is this girl a fighter. Phoenix is the cutest thing EVER!!! and Christina she is someone who is truly living life to the fullest.  enjoy read there blogs and leave them lots of love
 x0x0x0

Wednesday, November 19, 2008

I don't have a lot to say tonight but i'll just write this,
  
 Use your health, even to the point of wearing it out. That is what it is for. Spend all you have before you die; do not outlive yourself - Bernard Shaw

    x0x0

Wednesday, November 12, 2008

             This is my older brother Aaron









                                                                                       This is my Fiance Matthew supporting me!
     


     
           













   
This is Amy Justine and Stacy and Me at the bfb    








This is my Friend Amanda and she has CF too
Here are just a few pictures from the bowl for breath, it was a great year and it was so fun to see everyone.





Today i went to panorama city Kaiser for some tests that my doctors ordered. A bone density and also a Cat scan of the lungs. I also will do a random glucose test on Friday. I feel like they are about ready to diagnosed with CFRD. Let's hope its just to much soda. Please keep Christina in your prayers I'm very sad to say she is in rejection and will have some hard days to come so she needs some extra support. Also Megan is another who needs some good thoughts coming her way. 

Monday, November 3, 2008



Happy late Halloween!
This was right before we went to our Halloween party in Yucaipa
from left to right is
 ( Aaron Trevor Stacy Me and Matthew)
                

               
                         The party was fun, but planning to dress up was more fun. Stacy was the cutest Snow white you would ever see. She is the best everyone should have a friend like Stacy.


 
These three boys are very important i love them
 plus, they are hilarious.  Once you get older  Halloween has a whole different meaning.
 Next year I'm hoping maybe I'll throw a kick ass  party. 

I'm Feeling well, very tired. Trying to avoid all the sick people in the world, who always seem to find me. GrRrR. My friend Melissa isn't feeling well and is in the hospital for a routine tune up.
S0, i plan on trying to go visit her, i know how hard it is to be in the hospital. Well that's all for now
 x0x0 Jess 









Monday, October 27, 2008

In memory


                                                                   Maggie Mackey 
                                                                      rest in peace
                                                                       1988-2005



Come with Me

The Lord saw you were getting tired
And a cure not to be,
So he put his arms around you
And whispered, "come with me"

With tearful eyes, we watched you suffer
And saw you fade away
Although we loved you dearly,
We could not make you stay.

A golden heart stopped beating,
A beautiful smile at rest,
God broke our hearts to prove
He only takes the best.

It's lonesome here without you
We miss you so each day,
Our lives aren't the same
Since you went away

When days are sad and lonely,
And everything goes wrong,
We seem to hear your whisper,
"Cheer up and carry on."

Each time we see your picture,
You seem to smile and say,
"Don't cry, I'm in God's keeping,
We'll meet again someday"
-author Unknown-

When you lose someone who is important in your life you feel like part of you went with them. You feel empty and lost. After time the pain is still there and nothing seems to make that ache in the heart feel less painful. I think the one thing you can do to honor the ones who have passed is to remember them and keep their memory alive.
 Maggie, you are gone but never forgotten, In my heart forever.
 x0x0x


Saturday, October 25, 2008

Thursday's

I think thursdays are my favorite day now, I volunteer at a school and I love it. It's 2nd grade and so much fun. The kids are great and its something i have always wanted to do.
Im feeling well, nothing to complain about. I'm looking forward to the bowl for breath Nov. 8th if you are interested in a fun day of bowling let me know and i'll tell you all about a great event. 
 time for treatments x0x0x

Monday, October 20, 2008

Hi

I took the time to find all kind of other CF blogger's.
 so welcome welcome welcome! please say hi and introduce yourselves 
 I hope I get to know all of you. 
 x0x0 Jess

New info on Drug

Foundation Announces Positive Results for VX-770 – An Investigational Drug that Could Treat Basic Defect

October 20, 2008

The CF Foundation announced today that VX-770, an investigational oral drug aimed at treating the basic defect in cystic fibrosis, showed positive results in a 28-day, Phase 2 clinical trial. These data bolster the successful interim results reported from the first part of the trial in March of this year. Both studies were done with patients who carry the G551D mutation of CF.

“Data from the Phase 2 trial of VX-770 provide evidence that a small molecule can address the basic defect in cystic fibrosis, and suggest that modulation of CFTR may play an important role in CF therapy,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation.

VX-770 is being developed and tested by Vertex Pharmaceuticals Incorporated, with support from the CF Foundation. The potential drug aims to open the chloride channels that do not function correctly in people with CF.

Going Forward

Based on the positive results from this trial, Vertex plans to work with global regulatory authorities, including the U.S. Food and Drug Administration, to move VX-770 forward in the approval process. The company is targeting the first half of 2009 to initiate a pivotal trial that could eventually lead to drug approval.

The Foundation will work with Vertex to identify which CF patients this drug may work for going forward. Read more about about participating in CF clinical trials.

Detailed data from the VX-770 clinical trial will be presented this week at the 2008 North American Cystic Fibrosis Conference. Read the full Vertex press release here.
This was about a year or so ago. Always sick during the holidays...it doesnt seem to be thanksgiving or christmas with out a lil' extra juice! haha
Thats all for now.

Sunday, October 19, 2008

p.s.

P.S. I don't know if you can tell by the picture, but I'm ENGAGED!
  

Wow

This Blogging thing is alot of fun...im sorry it has been a while since i have posted. I read SOOO many people's blogs and they are so great. 
 I'm feeling alright i have an awful cough that is hurting so bad...my back my chest hurts so much. Im just trying to stay on top of my treatments and do everything i can do. Some times it gets so hard to do the same thing over and over when you feel very little results. but what can you do?
 shout out to Trisha from Confessions of a CF Husband. Keep Trisha and her family in your thoughts she is going through some rough stuff. Everyone out there needs extra support!
 x0x0x Jess

Thursday, August 14, 2008

This is New

Today I started my blogging experience. I enjoy reading about other CF'ers and their struggle and thought I should jump in the game and share my story. It isn't to eventful at the moment but goodness it does get crazy. Monday is a round of IV's and I am getting one last beach trip in tomorrow. I am feeling alright but am excited to start IV's and feel better; so I can kick ass and take names ;)
 

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