Winter Time

I recently had a doctors appointment which went well, however my breathing test results (pft) was down another 2%, which I'm not okay with! I've been doing my breathing treatments pretty much everyday, but apparently more exercise is necessary. Winter time is hard for me to exercise. I need to avoid gyms because they carry too many germs for me to be around.

Sunday will be my 29th birthday and Im very grateful to still be breathing on my own and be as healthy as I have been overall. Remember if you are facing a "timeline" given to you by science, its not in charge of your life!

If any one is interested, we still have our house and Camaro for sale. They would make an impressive Christmas gift for that special someone! Haha. Stay safe this Christmas season and enjoy time with family and friends. MERRY CHRISTMAS! Please don't forget the real meaning of Christmas.

Please Act Soon!

In January 2013, Congress is planning on cutting budgets that will affect many people including me that are dependent on medical research and advancements.

It's not just research that is threatened. These cuts will also affect the Food and Drug Administration, the agency that is responsible for the review and approval of new medicines. That could slow the review process for promising new CF drugs.

The good news is that Congress can still prevent these cuts, but they need hear from you.

The clock is ticking: there are only a few more opportunities for Congress to act before the cuts take effect. Tell Washington to protect these important programs and focus on reducing our nation's deficit without jeopardizing our efforts to add tomorrows.

Click here to learn more about how these cuts will affect people with CF

Thank you for speaking out. Your messages, along with those sent by thousands of other CF advocates across the country, make a difference in the mission to find a cure for cystic fibrosis, support access to quality, affordable care and raise awareness of CF.

There’s still more you can do if your fired up!

1. Sign up to receive Advocacy Updates.  

2. Visit the Take Action page to send messages on additional federal and state alerts.

3. Donate Today to support the efforts of the Cystic Fibrosis Foundation.

Very Busy Time

I can’t believe how fast time has been going by!  Thanks to everyone reminding me to post!

A couple weeks ago I went to the doctor and had a breathing test (PFT) and it came out at FEV1 90% again.  I think I can get it better than that, but I’ve been sick (sinuses, coughing, etc.) for a few weeks now.  A lot of it has to do with allergies too I’m guessing. I need to get up earlier and do my breathing treatments and walk!  I also had my vitamin levels checked and, like many women, I struggle with my D3 level.  Fortunately, by taking almost 10,000 units of D3 a day, I have brought my levels up from 2011’s summer score of 18 to now 24. I need even higher than 32 so I’ll keep trying!

A lot has been going on in the last few months.  We have moved and listed our house for sale with a realtor today.  Praying it sells soon close to the listing price since the realtor fee is so high. Also for sale is our 91’ Camaro RS. We don’t have room for it in the driveway at the new house.  : ( 

It’s interesting how my mind works and as if I don’t have enough already going on, I end up voluntarily adding more to the pile. I’ve been researching life insurance for the both of us (and I keep getting denied!), contemplating going back to school through a program online (this is a 6 year process so far), decided to sell the Camaro, held a yard sale at the old house, got the dog’s teeth cleaned, and other things that could have in reality waited.  I’m either full speed or sleeping…

So thankful the hubby has work again.  And this time local! It’s been 3 YEARS since he has had a steady carpentry job and could actually come home each night.  Praying and trusting it will last a long while.

Thank you for continued prayers and your friendship.  Get in touch with me if I haven’t seen you in a while.  I’d love to add you to the pile!  Sunday, the 16th, I’m singing at Cross Church if you are in the area (9AM & 10:45 Services – Blue Jeans welcomed and coffee and food are available while you’re there).  They have on the line up “Healer” by Kari Jobe.  She’s way better than me, but I’ll do what I can.  : )

Take care!

August....no way!

I cannot believe tomorrow is August! Things have been going well with some heavy coughing here and there.

I just recently returned from a girls trip in Texas. What a fun time! I learned a valuable lesson that you really can eat too much at one time. Too much Italian food and a car ride does not mix well with me. Tee hee.... On top of that fun, Luke and I closed on a house and are moving as well as putting up a new fence and moving a ton of dirt in the back yard to help with run off from the corn fields. Thanks to everyone who has helped us in some way. We appreciate you and your time very much. Thank you to those who drove a long way to help as well!

Anyone who knows someone looking for a nice 3 bd home with a privacy fence and over sized 2 car garage in town, send them my way! We are already motivated sellers! : )

June Update

Picture aquired from www.cff.org

Hello...it's been a while. Life has been busy. I'm sure you can all relate! Good things have been happening these past few months. I've felt pretty good despite the heat and allergies. Recently I received some good medical news...
 
"Vertex Pharmaceuticals announced positive final results from a Phase 2 combination study of Kalydeco and a potential cystic fibrosis drug called VX-809.

Cystic fibrosis patients with two copies of the most common mutation, Delta F508 (that's what Jen has), showed significant improvements in lung function while taking the combination therapy.

Based on this data, Vertex plans to begin a pivotal study of the combination treatment in those with two copies of Delta F508 in early 2013."
 
That's very exciting for me and hundreds of others. Thank you for all your continued thoughts and prayers. I promise you it is making a difference. 

On a side note: If you are looking for a pick me up, look for God in the details of your life and then you will be satisfied. I've had some amazing circumstances happen over the last 3 months that only God could have conducted. I hope you can look back and say the same. One of the things my church family believes is to simply "pray and obey".  If you have a personal relationship with Jesus you will see results! Don't diss it until you've given it a try. : )

Testimony Video

What an amazing week it has been. I had a fun filled weekend with my hubby and several of our family and friends. Sunday at church, my video testimony of surrendering my Cystic Fibrosis to God was shared. The responses of how the story has inspired others and brought them hope about things they are struggling with have been awesome. Thank you Eric and Adam for staying up all through the night to piece the video together. It turned out great and I believe it helped give glory to God. Thank you too Tim for encouraging me to share my story and thank you everyone for your support and prayers. They mean a lot! I really hope others decide that their story is significant and will share theirs as well.
If you haven’t seen the video and are interested, there is a link on this page under the “Links That Jen Likes” section or just click here: Jen's Video Testimony. Also, if you want to follow my blog but not want to have to remember to check it all the time, you may enter your email address on the side bar and “subscribe”. Don’t worry, I don’t know if you do it or not so no pressure. : ) Have a great day!

Doctor Visit

Great report yesterday from the doctors! Praise the Lord! My FEV1 levels were 90% (which is REMARKABLE for my age and gene mutations), Oxygen level was 99%, blood pressure was really good and weight was steady too.  I’m determined to get my FEV1 levels higher over the next few months.  To get started on improving the FEV1 levels, I went on a walk/jog (wog) with Luke and I could feel oxygen reaching the empty parts of my lungs.  Because of all that air movement, I woke up coughing at 2AM for about an hour and had to move to the couch, but if it’s clearing stuff out, that’s fine with me!

After the wog, we enjoyed a beautiful motorcycle ride around town and grabbed dinner at Subway. Nothing like fine dining. Almost as good as taking yourself down to a Waffle House! (Right Cricket County peeps?) 

I had a thought yesterday that I wanted to share. I encourage you to take a moment and think of all the tiny details in life that had to happen in order to make things turn out the way they did.  I was reminded yesterday of the many details that (for me) God is in the middle of. Also, for those of you who pray for something specific to happen, sometimes it will happen at the least expected moment. If you know you are making the right choices, don’t give up hope.  Just look back and review the details and you should see progress.

Good News for CF!

Recently I was sent information from the Cystic Fibrosis Foundation (www.cff.org) about a clinical trial they are conducting that is related to the two CF  genes I have (Delta F508). Currently, scientists are in Phase 2 of their study on the drugs Kalydeco and Vx-809.  So far it is showing promising Interim results!  The drug combo is demonstrating a significant improvement in lung function in people with the two copies of the gene.  Praise God!  This is such a huge thing.  It literally makes me all teary eyed when I think about it! 

I just wanted to share that with you all because it’s a really big deal for people with CF, especially the people with the F508 genes!  Monday is my doctor appointment so I will find out how my lungs are functioning and probably my vitamin levels too.  I hope the results are good.  : )

Getting Back on Track

I just finished my 10 day round of Cipro antibiotics and now my body is working on functioning like normal again. You know how antibiotics can mess other things up...gotta love side effects.  I still am coughing and my voice isn't all back, but it's getting there.  I'm planning on singing Sunday at church (thanks Joyce for trading me weeks!).  My lungs still ache when I take a deep breath.  I suppose it's from coughing so much.  I go to my doctor in St. Louis on May 14 for a check-up.  Hopefully I'll be all better by then and will receive good results.

I'm trying to get on a better schedule for exercising and taking my vitamins.  I recently made a check list to help keep track of it all!  I'm taking 2 different multi vitamins, Vit C, Vit D3, Mega Red (Krill Oil), Garlic, and a couple other things that I can't spell...haha.  Plus my regular Enzymes with food and lately Robitussin or Mucinex to help keep thin the mucus (what a gross sounding word).  I've also been doing my Pulmozyme nebulizer treatments, Vest machine (a vest I Velcro on like a shirt and it then "beats" me using air compression to loosen up the stuff in my lungs), and walking on the treadmill all at the same time. That my friends, is sometimes quite a work out! Now if only I could get out of bed without pressing the snooze 3-4 times.  Then I could get it done before the day gets going!

Thanks again to everyone that has been checking on me and even just thinking of me.  It all is appreciated.

The Word is on the Street

At this point, I’m slowly referring people to my blog and I’m so thankful for all the support that has been sent my way.  I’ve been sick for 9 days now so I’m hoping the end of this sickness round is over soon!  It started with a headache, moved to my sinuses (then they exploded), and now it’s settling in my lungs and covering my voice!  I need my voice back so I can sing Sunday.  It’s my week! 

I’ve been doing my breathing treatments and am on an antibiotic in case it isn’t a viral infection.  Just so thankful to be sleeping through the night again.  I went 7 days with not much sleep.  Amazingly, I wasn’t too grumpy.  HAHA.  Last weekend I came home at 1:15 from work Friday and stayed home on the couch ALL weekend.  It was really boring since we don’t have TV channels, but I managed to find things around the house to entertain me.  My mom came up Sunday and brought me food to get me through a few more days of avoiding the grocery store (Thanks Mom).  I’m so glad to have my energy back, but the side effects of the antibiotic are starting to kick in which they usually do on day 4 or 5 so that’s fun. : ) 

Thank you again to everyone who has taken the time to call, stop by, email, and post on this blog.  I am very grateful for the prayers as well.  My awesome pastor Tim at Cross Church has asked me to share my story of surrender and release on a future Sunday.  I plan on doing this and I'm honored he asked, but I must get my voice back first!  I hope that my real life story will touch others and encourage them to know that God is always in the details of life and that He really is alive in our church family.  Have a great day everyone and enjoy the sunshine!

My Big Secret

Thank you for taking the time to visit my blog. Even if you never come to this blog again, it still means a lot that you visited at least once. My big secret is that I have Cystic Fibrosis (CF). I've actually been in denial my whole life until recently.  

I was diagnosed as a young infant. For those of you who may not know much about CF, the average person lives to be 36. I'm 28, but each person's body will deal with the genetic disease differently and a statistical number will be no boundary for me! When I was born in 1983, the doctors basically told my parents do their best and I might make it through high school. Modern medicine, however, has improved the life of people with the disease. Overall, CF can effect many things. The main issues are related to the respiratory and digestive systems. Because my pancreas doesn't produce insulin like a "normal" functioning one would, I am required to take enzymes with each meal to help me absorb the nutrients. Many of you might now understand why I'm so short and skinny (but a healthy weight). Friends and family that spend a lot of time with me know I'm always coughing and often sick. It's because my lungs are bogged down with thick mucus and it's really hard for me to get it out. Believe me, I get annoyed by my own coughing too! In order to combat this challenge, I do breathing treatments daily. My medicine is expensive so insurance is super important. For example, some of my quarterly meds are up to $7,000 (without insurance).

Recently I feel like God has asked me to open up about this so He can receive glory in some way. I am also tired of "hiding" it and making excuses. It may be hard to believe, but I have learned more about CF in the last couple weeks than I have my whole life. I have discovered there is a great deal of support available, milestones, pain and unfortunately short lives, but I must make the best of it and with your help it will make it even easier. In closing, my journey will be what it will be, but I am hopeful. Thank you to those who are going to stick with me during my "CF Journey". Remember to live life and laugh often! Be thankful every day for each part of your body that is healthy because you never know when it might not be that way again. I'm grateful everyday when I get to sing because that's me telling CF that it has no hold over me.

If you are interested in following my blog, there should be a section on the right side of the page for you to enter your email address. If you decided to leave a comment below, make sure if you are using a mobile phone that the comment section tells you it will be submitted for review when you are finished or it will not post. 

I appreciate all the support and prayers.  No matter what happens, God is always GOOD.