HP Elite tablet raffle!

Becca's Buddies is hosting a raffle in order to boost funds donated to the Dallas Great Strides!

It's simple!

All you have to do is donate $15 at the link below. Once your donation has been processed, you will receive an email with a raffle ticket number. Saturday May 31st is the day of the Great Strides walk. The drawing will be LIVE and the winner will receive an unopened, brand new HP Elite tablet!

NINETY cents of every dollar goes straight to the development of life saving treatments, research, and clinical trials. Help me make CF stand for CURE FOUND!

Out of state?

In luck! You can still join! You will have to pay a small shipping fee, but this tablet is valued at over $500 so you're still getting a great deal!

Enter to win HERE!

Good luck! 

Rebecca

5-27

We all have them...we're no different than any "normal" person, but today seems more glum than usual.

I get online and see things about men and women in their 20's dying from CF. I ignore it to the best of my abilities, but it's constantly there... lingering, haunting.

 Every cough, chest ache, or body ache I wonder if this is the infection that will consume my body. I wonder if this is MAC flaring up after a few years of being dormant.

I look at my calendar and wonder if I'll be using my vacation time for a real vacation or a hospitalization, like previous years. I swallow my fear and continue through the day.

I'm not sure if it's the weather today or lack of sleep, but I'm feeling defeated.

What NOT to say to someone with a chronic illness...

What NOT to say:

1. "We're all going to die anyway." well, DUH. The only difference is I have this burden to carry, a number, the average lifespan, lingering over my head every waking moment. Yes, everyone is going to die, but not slowly, painfully, and without a fight.

2. "You don't look sick." Really? Because you don't look dumb but you just proved me wrong. We've all heard it before. Define: looking sick. Outward appearance doesn't always matter. Just because I look fine to YOU doesn't mean I feel okay.

3. "But you're too young to be this sick." Genetic mutations are present from the beginning so technically I've been sick since I was in my mother's womb. Talk about young! Plus, illness doesn't have an age preference.

4. "You're always so depressing!" Why thank you! I'm so glad you noticed.

5. "Are you faking it? Why are you exaggerating? You just want attention!" Yes...I fake being sick for pity. I enjoy laying around all day out of breath. I'm obviously exaggerating because I have nothing better to do. If I just wanted attention I'd shave my head, not have some life threatening disease, but thanks.

6. "smoke pot" "have you tried (insert natural remedy here).

7. "My mom has asthma (insert similar illness of lesser magnitude here), so I know EXACTLY how you're feeling!"

Alternative options:

1. What can I do for you?
2. How are you feeling? What can I do to help you feel better?
3. I hate seeing you like this, please let me know how I can help.
4. I know this is hard on you. Let's go (out to dinner, for a walk, to a movie) to take your mind off of things.
5. I would love to learn more about (insert illness here).
6. If you just need to vent, I'm always here.

NOTE:

People might not accept your invitation to help. Sometimes just offering can make a world of difference. It's important to have people in our lives that will lift us up and sustain us when we're feeling ill and down in the dumps. Everyone is different. Our needs and preferences vary, this is based off of my experience as a patient with Cystic Fibrosis.

What do you suggest saying/not saying?


B.

Featuring...

To boost awareness of CF, I'm going to be featuring one CF patient a week. See details below.

Email the following information to: rebeccacedillo@outlook.com with the subject line: CF Patient Feature

1. Name, age of diagnosis, current age- feel free to provide your diagnosis story!
2. Mutation- if known
3. Interests/employment/education/hobbies
4. What motivates you?
5. Hardest thing about having CF?
6. Favorite quote
7. Best memory
8. Listed/Post transplant?
9. Advice to a fellow CF patient


In addition to that, I will also be featuring a CF parent. See details below.

Email the following information to: rebeccacedillo@outlook.com with the subject line: CF Parent Feature

1. Age of child w/CF, age of diagnosis, current age, diagnosis story
2. Favorite memory of your child
3. Least favorite experience
4. Advice for parents of a newly diagnosed CF'er
5. Any thing you would like to share!


Be sure to include an image and a link to your FB, Twitter, or IG! 

Can't wait to meet ya'll!

Rebecca


**Please do not disclose any information that can potentially jeopardize your privacy and safety**

6 Rules of Living with Cystic Fibrosis

Now that I've befriended more people within the CF community, I've been able to compare and contrast experiences, stories, worries, and treatments. With that, I've also developed a profound appreciation for my unique scenario. Living with a chronic illness is not a destiny, it is merely a path traveled.

Based off of my experiences, I've composed a list of 6 rules of living with CF. Please note that these are my personal opinions from 25 beautiful, complicated years of life.

1. You will fail. Know that you will fail, expect to fail, learn to embrace your failures. No one is perfect. While other's lives may seem so, keep in mind that you're seeing the performance and not what goes on behind the scenes. You will not always be 100% compliant, your PFTs will rise only to fall, you will gain weight to satisfy your doctors, and a week later you will have lost double what you just gained. Failure is a part of success. The beauty of life is that it goes on, so get off the ground, wipe yourself off, and hold your head high. You're doing great.

2. Trust your doctors and other medical professionals. If you have questions, ask them. Never hesitate to ask, even if you think it's stupid. They are our resources and we need to utilize them! I decided to switch doctors shortly after transitioning to the adult clinic. I wasn't sure what I was getting myself into but I wanted a second opinion. My second opinion resulted in me being hospitalized, not improving, being discharged, only to return again two weeks later. During my second visit, I had a PICC line that took 3 hours to place, three IVs misplaced, and a severe anaphylactic reaction to an antibiotic that was on my allergy list. I set my pride aside, returned to my former doctor, and all is well. Make a list of questions that pop up between visits, get to know your doctor, and learn to trust him.

3. Be careful who you share details with. I am generally very open about my condition but there have been times with my willingness to share information bites me in the butt. I have had friends use discussions about my health as a way to retaliate, blackmail, and eventually sever the ties of friendship. Isolation can lead to depression, so don't cut everyone out. Learn to trust your friends and remember, if they confide in you, keep it confidential. Sharing their personal information with others can lead to them doing the same.

4. If someone offers help, accept it. I'm fortunate to have a few close friends who constantly offer to help me.Whether its picking up a prescription, bringing me dinner, or sanitizing my apartment, it makes a big difference. I am so  thankful for those who consistently go out of their way to ensure my health and comfort when I'm sick or in the hospital. It is  less of a burden and a reminder that I am loved. If someone offers, say yes! And when they're in need, return the favor! It's a humbling experience to be on both ends.

5. Sometimes, you'll have to put yourself first and that's okay! It's happened to all of us. A friend's birthday party, wedding, a concert you've already paid for...you're anxiously awaiting for the day to come. You've been looking forward to it for so long and you're ready to have some fun. But...CF happens and you're exhausted, running a fever, and have rings under your eyes. Well...maybe you'll just go and rest tomorrow. But then again...you really don't feel well. Weigh your options. Go and get sick, push yourself to the limits and land in the hole. Cancel your plans and rest, do a few extra treatments, and feel better. Sometimes you have to put yourself AND your health first. Yes, we all want to have fun, but make sure you're not pushing yourself to the limits. It's easy to get sick but hard to get better. 

6. BE HAPPY. Depression and anxiety suppress the immune system. Chronic stress is proven to decrease the immune system's response and will essentially send you into a downward spiral. If you're struggling with depression, talk to someone on your CF team about it or seek help from a medical professional. One thing you can do to tackle your depression is make a list of good things that happened each day. This will allow you to focus more on your accomplishments and the positive things in life. Overtime, you will create a pattern of positivity and it will become a self fulfilling prophecy! 

What rules would you recommend?

With love,

Rebecca