CFF National Volunteer Week

This week is National Volunteer Week for the Cystic Fibrosis Foundation, and we’d like to thank the many volunteers across the country who support our lifesaving mission.

Each year, extraordinary people like you give their time, talents and money to the search for a cure.

On behalf of the Cystic Fibrosis Foundation and all those affected by this disease, thank you for your generosity.

Our progress in the search for a cure would not be possible without you!

I would highly encourage those who don't normally volunteer to contact your local CF Chapter for volunteer opportunities!

Sincerely,
Cystic Fibrosis Foundation

Submitted/Update

I submitted my nursing school application today....YAY! Glad to have that out of the way and praying, praying, praying that I get accepted. I should know in about a month whether or not I've been accepted. I'm pretty confident, as I have a good GPA (way above the minimum requirements), previous degree in Health care, wrote a pretty good essay in my opinion (although limiting it to one page, double spaced is difficult), have a pretty good resume....with some healthcare experience. I really don't see any reason not to accept me? I did decide to write my essay based upon my CF....truthfully, having CF is what drove my passion to become a nurse. And I felt like if I didn't mention that, i wouldn't be conveying the true reason of my passion of nursing. I also included a little bit of "patient experience" on my resume. I hope they don't deny me because of my CF and transplant? I know several other CF and transplant patients that have been accepted into the UAB School of Nursing, and I think that would be discrimination if they did that? So we'll see. Please pray that I get accepted.

Back to studying....two exams tomorrow (Physiology Lecture Exam on final material and Physiology Lab Exam...comprehensive)....not near prepared as I had planned. Stayed up the majority of the night last night and probably will tonight too. I have an lab assignment that needs to be completed tonight, and then a project for my nutrition class due Friday. I plan on completing that on Friday, as I need every minute left to study for the Physiology Exams.

Also, Friday morning I have my appointment with the neurologist to evaluated the excessive shaking that has been driving me crazy! I hope they have a suggestion...but not looking forward to answering a million questions and convincing them it's not certain things (as I've done some experiments). I know all post-transplant patients have issues with shaking or "jittery" due to immunosuppresents (particularly prograf) and steroids. However, my issues with shaking were extremely minimal for about 4 years (about 1 year post transplant up until last year)...and now it is out of control....seriously. So we'll see if anything good comes out of this appointment.

Later! I hope everyone is having a great week!

This Week

This week is very busy, full of studying, studying, and more studying. Thrown in there is a full day of babysitting on Wednesday from 6:45 am until about 5:30 pm...WOW! Hence the busy week, there is no time for blogging...SORRY!

I have completed my nursing resume, and it was approved by our university career center. What's Left to do? Write my essay and fill out the application, which must all be completed by Sunday of this week. We have 3 available days to turn in our application materials next week: Monday the 19th, Tuesday the 20th, or Wednesday the 21st. My plan is to turn it in on Tuesday, shortly after classes.

I have my Physiology Lab Final (which is comprehensive) next Thursday. The following week (April 29th) I have my Nutrition Class Final (which is also comprehensive). The same day, I have my physiology lecture exam for unit 4 (thank goodness it is NOT comprehensive). During my actual Physiology Lecture Final Exam Day/time, we are given the option to re-take one of the exams we didn't do so well on. So I am re-taking Exam 1, as I definitely did poorly :(

And somewhere in between studying for these exams, I have a project due in Nutrition, 2 Physiology Lecture Quizzes, yet to be given, and some Physiology Lab assignments to finish up.

See why I don't have time for blogging this week or next?? Our Great Strides Walks also begin on April 24th, and continue almost each weekend, except for Memorial Day and Mother's Day!! And I have 1 wedding this month, and another next month. The one this month is for a cousin, and I am also in charge of keeping a few of the kids under control :)

Please pray that all the components submitted with my nursing school application will get completed without any problems. And most of all, please pray that I am accepted into the UAB School of Nursing :)

Oh...and my back is giving me some major trouble again....so I would love some prayers on that as well. THANKS!

I hope everyone has a great week! I am starting my inhaled TOBI antibiotic tonight...so hopefully it will keep me feeling well these next few weeks, or rather month!

Easter Update

I'm finally posting a much overdue update!! This has been a crazy and stressful week! I had 2 major exams (1 in Physiology Lecture and the other in my Nutrition Class). After studying almost non-stop the majority of last week and weekend and every day and night this week until Thursday morning....I'm finally taking a day off! I never knew how much studying could exhaust you! Many late nights...too much information to learn. I didn't do as well on my Nutrition Exam as I wanted. The physiology lecture exam wasn't as bad as I expected. I won't know my grade until Tuesday! I'm really praying for a "B", but not completely sure! It is nearing the end of the semester....and it has definitely gone by extremely fast!

I submit my nursing school application in 2 weeks. And I have a lot to do on that! I need to edit my resume. Our university has an online option where you can submit your resume to the career services center and they will critique it for you. That have specific people that know how a nursing resume needs to look and say. So I plan on submitting it to them by Wednesday of this coming week. I also have to write a 1 page essay on why I think I would be a good nurse and why the School of Nursing should accept me. I would really appreciate the prayers these next few weeks as I prepare my application, and then more importantly, that I will be accepted.

On to news other than school.....I've been doing a lot of stuff with our local CF Foundation. I have a more detailed post with this, as I don't want to make this post too long that you won't want to read it! Basically, I've been doing a LOT of speeches and have been really involved in our CF Great Strides Walks that start this month!

Tomorrow I plan on attending church for Easter Sunday. I'm really excited, especially since I have not yet been able to get back to church and Sunday school due to school/studying and/or needing to sleep. We will be having Easter lunch at my Aunt's house tomorrow afternoon. I'm definitely looking forward to that and spending time with family! Last year, I had an extremely bad case of Vertigo, and had to miss out on Easter lunch and the entire weekend in general!

Unfortunately, after Easter activities tomorrow, I will be back into studying and doing school work. I have a online quiz due Monday. I have to listen to an online lecture in order to well on the quiz. I also have a Physiology Lab Quiz on Thursday, which I will need to begin studying for!

That is really all I have to update on! I'm extremely blessed to be celebrating Easter and are truly thankful to Jesus for dying on the cross and rising again! I received my transplant 6 years ago on Ash Wednesday (which that year was February 24th). I never knew that until my wonderful CF doctor pointed that out. Easter is a wonderful season for miracles. And I'm praying that some of you awaiting that miracle of new lungs, gets a wonderful gift SOON!

Brief Health Update: overall I'm still feeling ok. The stress from school the last week or two hasn't been the best, as I've been extra tired. I am coughing a little and are having some chest pain. I can start the TOBI inhaled antibiotic this coming Monday. So I plan on starting it at least sometime next week, and hopefully that will keep any infections at brew away! I will probably go to transplant clinic the 2nd to last week or the last week in April, depending on how I am feeling. My back is hanging in there too. I have my bad days and my good! My shaking is out of control, and I have asked to reschedule the neurology appointment.

I hope everyone has a blessed Easter and a great weekend.

Take Your CF Deductions!!!!!

Join KnowCF members members LouLou, VMHoward and Julie in their first video conversation about Taxes and CF! I have not listened to this video yet, but based on the topics covered, I am very interested. I highly recommend checking this out, as a lot of CFers and CF family members are not familiar of what they can and can't deduct on their taxes related to CF!

**Moms/Dads**....definitely check this out if you are unfamiliar of what you can deduct! Look at the Nutrition and the Back at Home topics below!

This topical video series (three segments) focuses on United States tax law and deductions that may be allowed for health reasons. This engaging team has worked hard for your benefit, doing extensive research, sharing their stories, and designing a meticulous yet simple-to-grasp spreadsheet for you to model as you organize your own savings possibilities.

Three of the KnowCF e-Patient members, Lauren, Victoria and Julie have organized information on CF healthcare costs and tax deductions. These Health Opinion Leaders (HOLs) explain which expenses qualify for deduction and how to track expenses. They have created roughly fifteen minutes of engaging and polished footage on this very valuable topic.

These are the topics they will cover: (I have not listed every single topic and question. You can visit the website for more information and details)

1. What sort of medical expenses are deductible?

2. What is AGI or adjustable gross income, and how do I know if I should itemize or just take the standard deduction? How much do I need to have in deductions in order to be able to use them?

3. Can a caregiver use these deductions too?

4. What about special equipment and materials for cleaning my nebulizers?

5. What about things we wouldn’t be doing if it weren’t for CF, such as special disinfecting cleaning products and HEPA filters for indoor air purification?

NUTRITION:
6. Obviously healthy people eat food, how do I know what I can attribute to CF?

9. Are my vitamins deductible?

8. My child drinks nutritional drinks recommended by the doctor. Are those 100% deductible, or must a percentage be deducted that would not be attributable to CF

EXERCISE:
11. Is there a way to deduct my gym membership?

CF CLINIC:
12. the travel to my CF center deductible? Can I deduct miles to and from the doctor?

13. Can I deduct anything related to my transplant?

14. What about when my child is inpatient, can I deduct visitation mileage, parking, hotel and food?

BACK AT HOME:
15. Are home improvements deductible? / Can I claim home improvements that I made as a deduction?

16. Can I deduct the cost of trash?

17. How do I deduct electricity?

Click here to visit the KnowCF website! I personally have never come across this resource website. It branched from the CysticFibrosis.com Website. It looks like it can be very beneficial.

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