Friday Fill-Ins

Finally....time to actually blog!!! May not last long, so figured I better take advantage of this time while I have it!! I haven't done Friday Fill-Ins in a long time!

If you are interested in participating in this fun, Friday, meme, click here!

1. I'm going to Nashville to visit a best friend in a couple of weeks. Finally a break that I've been needing and wanting to do. In addition, I've never been to Nashville, even though it's only about a 3 hour drive from where I live.

2. I'm not the type of person who usually enjoys adventure and daring.

3. Perhaps today you can make it a point to play with your pet! If you have a cat....have you tried the laser pointer? My cat loves it!.

4. I don't have much of a true adventurer’s spirit.

5. Compassion is an amazing gift. Always have compassion for others!

6. I keep on going no matter how difficult the task or challenge might be.

7. And as for the weekend, tonight I'm looking forward to doing nothing...watching TV...oh wait, I have to listen to at least 1 online school lecture; tomorrow my plans include studying for finals next week and listening to more online school lectures; and Sunday, I want to make it to church and accomplish even more studying....just a few more days!!

Creon Survey.....Paying $50!!!

Patients taking the pancreatic enzyme medicine CREON ® (pancrelipase) are needed to participate in assessing the CREON drug safety program. Eligible patients or their caregivers will complete a 15-minute internet or telephone survey and will be paid $50 for completing the survey. Patients and caregivers may only take the survey once. For more information and to see if you are eligible to participate, please contact BioTrak at 866-866-5856 or support@biotrak.com

I don't take Creon, but on CysticFibrosis.com, several people have commented they have taken the survey and gotten paid! So check it out if you do take Creon enzymes!!

This was in the latest issue of CysticFibrosis.com email newsletter.

CF Great Strides Walk Survery

Have you completed the Cystic Fibrosis Foundation's Great Strides Walk Survey?

You walked the walk, now talk the talk!

As a part of Team CF, your input is very important to the National Cystic Fibrosis Foundation. Tell them about your GREAT STRIDES experience by taking a brief survey.

It takes less than five minutes to complete the GREAT STRIDES survey. Your feedback helps us improve future events to better serve the CF community. I really want to encourage everyone who participated in a Great Strides Walk this year to complete this. So...take a few minutes right now to take this survey..... it is VERY SIMPLE, and literally, takes less than 5 minutes! Your feedback is important!!!

Also....as a huge advocate and volunteer with my local CF Foundation....I would love to hear your feedback as well on your local Great Strides Walk that you participated in. I would love to hear what activities you had, if any; what food was provided, if any. Did you have a team? What did you do to fundraise? to recruit team members? What works best for you? I find it beneficial knowing how other Great Strides Walks work in different parts of the country. It gives each of us ideas, that we may have never thought of. Or we might can help you come up with ideas for next year's Great Strides Walk. I love giving feedback, and helping wherever I can. Not only do I have my own team, but I've also worked on staff at our local CF Foundation and have experience "behind the scenes." I usually try to attend all of our chapter's walks if possible!! So feel free to share your experiences and feedback as comments to this post, or you can email me!!!

THANK YOU!!!

Do you Have Substance?

Sarah, over at Stand Tall Through Everything has given me a very honorable and sweet blog award. She has awarded me the “Blog With Substance” award. Thank you Sarah. You are an awesome person and have such a strong and positive attitude, despite life's challenges. I really admire your strength!






As part of my acceptance post, I’m supposed to sum up my blogging philosophy, experience, and motivation in 5 words. So here they are:

Awareness
Inspirational
Passion
Resourceful
Fun

Now I am going to give the “Blog With Substance” award to other blogs that I really like and enjoy reading. I find these blogs very informative and filled with "substance" (no matter what it is). The "authors" of these blogs are amazing. So it's definitely worth a visit!

Katelyn Elaine : I am so glad we "met" and quickly became blogger friends. She is always very encouraging and inspirational. Her blog is filled with all kinds of substance!!! Her life always sounds interesting and I really enjoy reading her blog!

Brandi at Every Breath I Take: Brandi and I are friends in real life as well as "blogger world." I love hanging out with her and she really puts an effort into making a difference in the CF Community. Her blog provides resourceful information, but I also really enjoy just reading about her "life." She always has a story to tell and loves to travel!

Michelle at A Cure 4 Lil' Chris: Michelle is an awesome Mom and documents pretty much everything on her blog (like a diary, but with pictures). Her kids are precious. Ever since her son was diagnosed with CF, she has become a huge advocate and is really involved in the CF Community. She loves interacting in the CF Community and Blogger World. Michelle will post informational and resourceful things on her blog, as well as fun things her two little kids are doing! Definitely stop by her blog!

Ronnie at Run, Sickboy, Run: Talk about substance, Ronnie has it all! From information and resourceful posts regarding CF, to stories about his daily life and newlywed life, his life experiences, and much more. Ronnie really tries to be a role model and motivator for those with CF or those families with CF. He has really taken a huge step and is now making a huge impact in the CF Community. But he also shares fun stories from his life that are non-CF related. Definitely give Ronnie a visit! His blog is FULL FULL of substance!

Thanks again Sarah for this blog award!

Register for CF Webcast!!!

Produced by the Cystic Fibrosis Foundation, this innovative series of Web casts brings the cystic fibrosis community together in a “Virtual CF Education Day” forum to learn from the experts about living with CF and the latest in CF research."Take the guesswork out of working with your CF care center!"

When: Thurs., Aug. 19 (8:00 p.m. ET) for a live Web cast, "Partnering for Care: Help Your CF Care Center Help You Thrive"

Watch this free Web cast for tips on working with your CF care providers to maximize your or your child's CF care.

The Web cast will feature CF experts:
Peter Mogayzel, Jr., M.D., Ph.D., Director of the Johns Hopkins Hospital CF Center and Pediatric Lung Transplantation

Michael Boyle, M.D., F.C.C.P., Director of the Johns Hopkins Hospital Adult CF Program

Drs. Mogayzel and Boyle will address questions about the following topics:

• How to partner with your child to reach your goals in managing CF
• How to partner with your care center in the transition from pediatric to adult care and the varying aspects and concerns with the change
• How to partner with your adult care center to successfully manage CF in your daily life
• How to partner with your care center when considering lung transplantation.

You can submit questions when you register and also during the live broadcast.

Click here to register for the webcast!

Honoring Americans with CF

This was information sent out by the CF Foundation in a recent email!

As we celebrate our nation's birthday, the Cystic Fibrosis Foundation is proud to honor all of the Americans with cystic fibrosis who celebrated birthdays of their own this year.

Like so many people across the country, the 30,000 children and adults with CF dream of a better, richer and fuller life.

We asked a few of these special people with cystic fibrosis, as well as others in the CF community, to share their own unique dreams for the future. Their dreams humble and inspire us.

Will you give a gift today in honor of your fellow Americans with CF? Your gift helps fund lifesaving research, care and education programs for people with this disease. With your continued support, people with CF will celebrate more Independence Days, birthdays and holidays of all kinds.

Click on the links/thumbnails below to donate either to the CF Foundation National Chapter or my Great Strides Miracles Team!

Thanks to generous support from people like you, the length and quality of life for people with CF have improved dramatically. Nearly half of all people with CF are age 18 or older.

Transplant Clinic Report

I had a transplant clinic appointment this past Wednesday. Overall it went pretty good. My lungs sounded good, lab values good, and PFT's about the same.

The Lisinopril seems to be working pretty well for my blood pressure. I am still monitoring it and may be stopping a medicine soon to see if it might be causing the high blood pressure. The Lisinopril is also known to cause high potassium levels (hyperkalemia); My level was normal at clinic Wednesday, but higher than it usually is. So I will get my levels re-checked sometime next week.

I have been feeling run down and have had a cough and tightness in my chest, lack of energy and shortness of breath. I am finishing up my last week of TOBI and really didn't feel like the TOBI was helping get rid of this infection/cold at all. So my doctor put me on 2 weeks of Cipro.

I'm having to be extra cautious and really proactive with my health right now, since I'm starting nursing school. I really want to be able to go through the entire program without getting pneumonia or having to be hospitalized for any reason. Since my transplant 6 years ago, I've never gone an entire year without pneumonia or bad lung infections that have required IV antibiotics. While I can do home IV's, I usually have to be admitted for at least 1 week to get a boost on feeling better. So this will be a big adjustment for my body, but praying that it will cooperate! I really have had a good run since January's pneumonia hospitalization this year.

I am going to make sure I get the pneumonia vaccine at my next clinic appointment.(I've never had one, but the transplant team puts it on our list of things to get, but it's never been mentioned to me). I still have a few more vaccines to get that are required for nursing school.

Please continue to keep me/my health in your prayers! Also, my hands seem to be shaking worse, despite being on the medicine that is supposed to help/take it away. It may be due to stress, back pain, etc. But I really need steady hands for nursing school, and don't want this to be a hindrance during labs and clinicals.

Friday News

I am headed to the lake tonight for hopefully a nice and relaxing weekend. I was wrong about not getting a day off from classes for the 4th holiday. I thought our professor had July 5th on our syllabus, but he didn't, and he verified in class on Wednesday, that Monday is indeed a university wide holiday...YAY. So that means an extra day at the lake. Of course I have to take studying stuff with me. I've been spending the majority of my time studying Microbiology, that I haven't had time to do much for my online Developmental Psychology course. And I didn't do too hot on the last exam. So I will be catching up in this course at the lake. We have an exam due by Wednesday, a project due next Sunday, and a few other assignments. The professor uploads her lectures to the course website (since it is an online course). That is the only thing I don't like. Most of the lectures are 1 1/2 hrs to 2 hrs long and it is very hard for me to sit in front of my computer and listen to them. And then she adds all these extra videos for each unit, that in total, are at least an hour long. It is a lot of stuff, but I have to do better on this next exam, because I really want an "A" in this course.

For those of you who don't follow me on facebook, this past Monday, I got some wonderful news. I was selected to receive a full nursing school scholarship. I was 1 of 2 people and it is the best and highest scholarship the School of Nursing gives out. I was so happy, excited, shocked, etc. Totally unexpected. I was pretty sure that I would get some sort of scholarship, because the School of Nursing gives out a lot of money. I knew I had the GPA, resume, good essay, good recommendation letters, etc. But I also knew it was very competitive and we were told that probably 75% of this class met the requirements to apply for a scholarship. We had our 1st Nursing orientation session last Friday. We were told that they had extended the scholarship deadline and we would not find out if we were selected to get a scholarship until the 2nd week of August. Classes start the 3rd week, so as you can imagine, not too many people were happy about that. The particular scholarship that I'm being awarded requires the school to notify the recipients by June 30th. So that is why I found out sooner.

It is such a blessing and such an honor. I'm so thankful and really give God all the glory for this. Our family has been in some really tough financial situations lately. If there was not going to be scholarship money awarded, we were definitely going to have to take out loans. The scholarship may not cover all other expenses, and it does not cover the summer semester next year. But other than that, it funds the entire program and there are no requirements to keep the scholarship (such as GPA, etc.). This is such a blessing and took a huge burden off of my family and myself's shoulders. I had been applying for other scholarships (such as Solvay CF one, Boomer Esiason Transplant Grant, etc.) but had not heard back anything.

This summer is going by so fast, and before I know or realize it, I will be starting nursing school. YAY! Classes will be over the last week of July, with my last exam the 1st week of August. I'm hoping to fit some sort of mini vacation during my 2 week break before fall classes start.

I am babysitting tomorrow and next Friday. Then the next Friday, the 16th, I am taking the required CPR course for nursing school. So since I have classes 4 days a week, these next few weeks are going to be busy busy!

We had a really good CFF Young Professionals Board Meeting this past Tuesday. We are really excited to get this group up and going for our chapter. We have tried in the past, but the right people were not in the right place at that time. We are confident that the members on this board are very passionate about CF and really want to help find a cure. I was elected Secretary of the group, since I love taking notes, organizing, etc.

I hope everyone has a safe and fun holiday weekend!!!