May is Cystic Fibrosis Awareness Month :)

May is Cystic Fibrosis Awareness month :)

I'm honestly not sure how to start this post

For those of you who don't know much about Cystic Fibrosis, go here: https://www.cff.org/

Did you know that they (to the best of my knowledge) finished phase 2/3 for Kalydeco?

That's huge.

I don't know the exact changes that the new Kalydeco pill will play in the majority of CFers lives, but it's supposed to reduce mucus production, making it easier to breathe.

It's supposed to increase lung function and digestive ability, including absorbing nutrients better.

We may have less salty skin.

Possibly less medications to take.

Spouses with CF who may be struggling regarding fertility may actually be able to have children.

PFT scores will go up.

Less hospital tune-ups will be needed.

And much much more. 

Because it sounds like it will feel like a cure, even if it is not.

I have a lot of hope towards progress, especially since it is picking up pace. 

For instance, the new Tobi Podhaler will save at least 13 hours per treatment cycle.

Moving on, my mission preparation has brought up some new worries and changes that the church has never faced before. I won't go into detail because I've decided to leave it in the Lord's hands and it's his mission, not mine. However, during the stress, phone calls, miscommunication, etc, it all sums up to me thinking "I NEED A MIRACLE!"

But while sunburning enjoying the sunshine today, I thought, "No, this is a miracle. Each day is a miracle. The miracle is now." 

I still hear stories of my fellow CFers fighting each day. I've seen graphic images of pre and post lung transplant life. I am constantly touched seeing and hearing others lending support and care.

Through compliance, we still take our pills at morning and night and throughout each day. We have strap on our vest and tolerate some tar-tasting meds that we breathe. Exercising doesn't always come easily as there may be the sensation of a corset being wrapped around our chest. There are hours given up to take care of ourselves, even if it means we are tired. Sometimes we quietly leave events early or cancel out because we are not feeling well, need to do an extra treatment, or just plain need to give our body a break (and, as a side note, I've accepted is is rarely happening during my mish)

With all this being said, CF is not always easy. There are ups and downs but we as not only CFers, but friends and family can lift each other up. If you may feel stressed, down, or wanting to throw your hands up in the air yelling "I NEED A MIRACLE!" when all seems to not be going as planned, you may step back for a moment and realize "the miracle is now." We still have loved ones around and if we don't see the light at the end of the tunnel, just be glad you're breathing.

In conclusion, one of my fellow Cysters shared this lovely image on Instagram. You can search more about the boy who came up with the phrase "Sixty-Five Roses."Making it easier to say doesn't make it easier to live with. However, there is so much hope in store. I don't know when Kalydeco or a cure will come in place, but it's only through the help given. If you know someone with CF or have it yourself, extend support and spread awareness and the hope that lies ahead. Let them know you love them. If you are a CFer, keep fighting. One of my favorite quotes is by A.A. Milne: "You are braver than you believe. Stronger than you seem, and smarter than you think."

If you feel you need extra hope or know someone that may, here is a video from a leader of my church, Jeffrey R. Holland. Even if you are not  LDS, I invite you to listen to him as this talk is a sample of the hope and truth that comes from the gospel I am grateful for. It is applicable for anyone.