Monday, November 6, 2017

HUGE NEWS!! 47 and Counting!!

When I was diagnosed with CF at 11 months old my parents were told to take me home and love me because I probably wouldn't live to see my 10th birthday. Right then and there my parents chose to fight and fight like hell. When I was old enough I adopted my parents philosophy and I joined the fight. 

This past weekend at NACFC the median age of survival for CF was raised to 47. This is huge news!! I have seen some mixed reviews about this in the community. I have seen both positive and negative thoughts on this and a lot of misguided information. I think more information and data from the CFF would be welcomed by both sides. 

What does raising the median age of survival mean exactly.... well it doesn't mean we all automatically live to 47 and that's it. Yes I have seen this out there. 

I for one see it as a positive and amazing stride in getting us closer to a cure. Raising the median age of survival means to me that... 

1. My lil CF kiddos have a real opportunity to live longer lives!! 

2. Newly diagnosed children of today and the future are going to have even longer lives than us diagnosed in the 70s and 80s. 

3. These parents of newly diagnosed children are going to have such a better story to tell than my parents. Their experience will still be devastating to hear but not so negative and grim.  

4. This means that these drugs and medical advancements that we all work so hard for are working and it means there are options out there. When I was diagnosed there were no drugs available. We have come so far!!! 

5. It means all our hard work and time as an older generation of CF patients and loved ones spreading awareness, participating in drug trials, and fundraising is not being wasted. 

This huge news is more of a positive win for the younger generation and I for one am completely ok with that. It's why I do what I do! 

Some of my fears that I have with this huge news is... The CFF needs to stress it's the MEDIAN age of survival. I would hate for the increase in age to deter donations. We are still losing children and young adults to CF and the momentum of fundraising, research, and clinical trials CANNOT slow down! 

There will still be so many children and young adults that do not make it to 47 having a number like that can set up people's mind for failure and that scares me. 

My whole life or when I could truly grasp the fact about CF and what that meant I knew the median age of survival was 37. When I turned 37 a year and a half ago it was such a surreal feeling. I almost felt like a huge weight in some way was lifted off my shoulders. I remember thinking to myself ok. I did it!! 

I can't help but think now that I am in for another giant fight to get to 47.. I like to have goals and I like to surpass those goals but I also need to be realistic. Having unrealistic goals is stressful for anyone. Trust me I would love to live to 90 but again I don't want to set myself up for failure. Don't get me wrong I'm ready to fight and fight so hard. 

I have tried to never let statistics keep me from living my life or dreaming the impossible. I always say keep your hopes high and dreams BIG! Numbers or statistics should never define us, I feel we are constantly proving that ever day. All we truly know is that this very moment is all we have, and that's what we need to focus on! I know that nothing is worth more than this day, right here.... right now. Fighting CF takes a village, I couldn't be more grateful for my village that has helped me get to this very moment in life, and that is also worth celebrating in my book! Breathe out Love! Xo❤️

Wednesday, May 31, 2017

We Did it! Thank You!

Thank you so much!!!! We did it!!! 

Because ALL of you are so awesome, and amazing we surpassed my goal of $3838 at 11:30 pm on my birthday. We are now at $4,596 and counting. Woop woop #38Donate The money raised goes directly to the CF Foundation and 90 cents of EVERY dollar raised goes to funding research... which is so amazing and will get us that much closer to a cure. 

Thank you for ALL your love, your support and for just being right behind me every step of the way today and everyday!! My birthday link will be live until the end of May which is CF awareness month.

Thank you so very much for all your continued support. I appreciate every single one of you, you truly keep me going. I am so very blessed to be a part of ALL of your lives! 
Breathe out Love! Xo❤️

38 Donate!

38 Donate!! May is Cystic Fibrosis Month and it just so happens to be my bday month.... I don't think this is a coincidence. 

It's an exciting time in the CF community more than half the CF population is over 18 now which is unbelievably amazing, but sadly only 15% of the CF population is over the age of 40. Turning 38 that statistic hits a lil to close to home and is very sobering to me, in fact this number is not ok. 

A cure is close, but we aren't there yet! Please join me as my theme for my bday this year is 38 Donate!! I have set up a special link to take donations that will go directly to the CF Foundation and help fund research to find that sought after cure. Because let's be honest that is the best birthday gift I could ever hope for.

As I celebrate my 38th birthday I know that the odds haven't necessarily been in my favor and getting here hasn't been easy, but it has definitely been worth it!! I am filled with more hope than ever, and truly believe with my whole heart that a cure is close. 

Thank you for making my bday so special by making a bday donation in my honor and helping all of us with CF keep celebrating these milestones. I dream of the day I can celebrate my 40th bday and I will have ALL of you to thank for that. 
Breathe out Love! Xo❤️

Wednesday, February 22, 2017

Love To Breathe Award 2017

I had the honor of presenting the Love To Breathe Award at the annual Adding Tomorrows meeting. The Love To Breathe Award was established in 2007 making this year the 10th anniversary which was pretty incredible. 

The award is given to:
•someone who is passionate about Cystic Fibrosis
•someone who is out in the community raising awareness and making a difference
•someone who is known in the CF community
•someone who has the ultimate goal to make CF stand for CURE FOUND

This years Love To Breathe Award recipient was Kathleen Richards!! She lives and breathes all these qualifications. To know her is to love her. I had the pleasure of presenting with her at NACFC this last November about mentoring, little did she know she's always been a mentor to me. 

I first met Kathleen when I was 12, she has put up with me for so many years not to mention my teenage years that alone deserves an award. She has taught me all my airway clearance techniques and was the reason I came up with my own technique which I call "Somer Genics" She loves mucus and to this day she still gets so excited when I call the mucus hotline. I'm so honored and lucky to have her as a friend. 

Kathleen thank you for all you did for me and for all you do for my lil CF kiddos. You have taught us all how to breathe deep, BLAST it out, and to always keep on going! Taking this pic with these cardboard heroes seemed fitting since you're a real life hero to so many!! This award was long overdue and so well deserved. Breathe out Love! Xo❤

Friday, February 17, 2017

Surviving Is My Reality

"And so she breathed through her life as if it were a battlefield and wished that one day she would actually live, and not just survive."

This quote is so fitting. CF is my battlefield I will tell you that surviving this battlefield is no easy feat! Today my CF apt was loooonnnggg and a lil bit draining to say the least. My mind is always on overload after appointments like today. I truly am in awe and so very grateful for this body of mine, it seriously amazes me everyday at how hard it works just to survive. 

My lungs are on a slow but steady decline. Seeing loss in lung function and facing the reality of what percentage of lung power I have left can be somewhat discouraging. However, I try not to focus on the numbers too much... it's easier said than done, but the mind can be a powerful healing tool. I have one month to turn these numbers around or I'll be joint bound. Until then I will continue to breathe through my battlefield and do everything in my power to survive because surviving is my reality and I have to be ok with that. 
Breathe out Love! Xo❤

Monday, January 16, 2017

CF Bacteria Is Stressful

Very interesting read from Cystic Fibrosis News Today...

I believe the more awareness and education on CF bacterias would be beneficial and help alleviate some of the stresses for parents or patients when they hear that pseudo or other bacterias are present. 

I think there is a lot of pressure on parents when they find out their child is growing out a bacteria. They usually blame themselves or immediately wonder what they could have done differently. The reality is that these bacterias are everywhere and there is steps you can do to help prevent being exposed but if our lungs want to grow out a bacteria they will find the power to do so. I'm pretty sure that even if we lived in a germ free bubble the bacteria would still somehow manage to get in at some point. 

Everyone I know in the CF community does the best that they can do. There's the extreme germ a phobe to the relaxed take life by the horns approach there is no right or wrong approach you just have to find what works best for you and your lifestyle. Hopefully with better understanding of these bacterias minds will be put to ease that even after all the work the patient or parent has done CF will still strike. So just keep doing your best, stay strong and positive and together we will fight when CF does strike. Breathe out Love! Xo❤

Wednesday, January 4, 2017

New Year... Keep Being You

I have spent the last couple of days reflecting on this last year.... Whether it was through laughter or tears I am so grateful to have had each and every moment that I did and so lucky to have spent them with some of the most fabulous people. There were some amazing moments in 2016 that took my breath away... in fact there are way too many to count or sum up in just nine photos. Each day is such a blessing, even the bad days can help you learn and grow. 

"If you're lucky enough to be different, never change."-Taylor Swift

Just Be You... Don't make goals to change yourself make goals to better yourself. You should never have to change who you are to fit in... be different! Be proud of who you are and own it. BE YOU! Happy 2017 everyone!! Thank you for your love and continued support. I hope this year brings you good health, happiness, lots of love and many moments that take your breath away. Keep being you. Breathe out Love! Xo❤️