The Decision Within - Guest Post Written by Somer Love

Whether we realize it or not, the human spirit yearns to be connected with those around us. To endure the triumphs and tragedies of life connected at the very core of who we are. We want to know and give empathy; walking beside each other through this beautiful journey of life. I am so very grateful for the fellow CFers, their families, and friends that have touched my life. It is with great honor I share this incredible Cyster (fellow girl with CF) with you all. She's changed and inspired many lives, including my own. A very special thank you to the beautiful Somer Love for sharing herself and her life living with CF. 

Somer is a double DF508, eligible for the newest approved drug, Orkambi, that combats the underlying cause of CF. This may sound like a dream come true for her, and it is, but it comes with some difficult decisions to make as well. Here's her story....

Love to Breathe - "Decisions and New Normals"

"I believe it is important to educate and raise awareness about CF and spread Love whenever and wherever I can. I want to change the world! I try to live each day to the fullest by keeping my hopes high, and dreams big!! I am 36 years old living with Cystic Fibrosis, and I am an active advocate in the CF community. Being diagnosed at 11 months old I was unable to make my own decisions. However, I am fortunate enough to have fabulous parents who chose to help fight my disease. When I was old enough I adopted my parents philosophy and joined the fight. This is my fight... 

When you're constantly faced with hard decisions in your life a crystal ball would really come in handy. I couldn't be more excited for the approval of Orkambi. I have been waiting quite some time for a stride of this magnitude, basically ever since I was in sixth grade and they had announced they found the gene that caused Cystic Fibrosis.

So you might wonder why I am not already taking this wonder drug?! Well, it's not that easy.... My lung function as of a week ago was currently at 28%, what does this mean? well it means that I have about 28% of my lungs left. So what comes easy for you may be extremely hard for me, or it may not even be a possibility. Don't feel sorry for me though, it's all I know and with each decline in my lung function, I find my new normals.

So back to why I'm not quite taking this drug yet, well remember when I said I'm always faced with hard decisions, well this would be one of them. Orkambi was studied in individuals with a 40% lung function or higher. When you initially start this drug your body is having a major overhaul this drug is unlike anything we have ever seen before, it basically corrects the underlying cause of CF. So basically it stops the symptoms before they develop... What?! This is HUGE now you know why I am so excited!!

So as you take that first dose of Orkambi your body is starting to correct itself and you basically become sicker before you get better. People have experienced tightness in their lungs, shortness of breath, they have even coughed up more mucus than they ever have before. What?! More mucus than ever before.... that symptom right there blows my mind. I mean I have some major mucus, I could fill a Dixie cup in 5 min if I wanted to. Could you imagine if I was coughing up more than that.... I'm imagining buckets. Probably TMI, I know but I can't even fathom it.

So when your lungs are basically cement and there isn't much movement going on down there to begin with, trying to move out gobs and gobs of mucus could be tricky. So right now I'm basically trying to do as much research as I can on Orkambi. I've been waiting to see how it effects others with lower lung functions and then I will decide when I will take this leap of faith, and be ok with not knowing what may come next. See I told you it was a hard decision.

I'm very grateful for these lungs of mine because currently they are stable and holding strong for me. I work really, really hard at it keeping them healthy and I have been out of the hospital for 17 months now, which is another feet in itself. I'm hoping that when I start Orkambi it can continue to keep me out of the hospital, stabilize my numbers for good and just maybe it will make things a lil more easy for me to maintain. I know Orkambi isn't a one way ticket on the easy train, because let's be honest there is nothing easy about CF. You still have to do all your treatments and be as compliant as possible. Currently I give 110% to maintain my health. In taking Orkambi I am hoping my CF maintenance becomes more manageable. So for now I am basically going to be a sponge and soak up as much knowledge as possible, or just keep searching for that crystal ball."

Breathe out Love❤

Somer Love

Please follow and support Somer's journey on Facebook at Love to Breathe and check out her website: www.lovetobreathe.com. 

Seasons of CF

I know not a thing of absolute other than the certainty of the changing seasons. 

It's the season of summer. Everywhere I look the earth around me is filled with so much life. I walk outside and the afternoon summer sun kisses my cheeks, radiating warmth through my entire body. I pause for a moment, take a breath in, and tears begin to overwhelm my eyes. I think to myself, "Yes, I truly am alive." With each uncertain breath that fills my lungs I am consumed with the deepest gratitude for life, for this beautiful season. 

I close my eyes and the world seems to stop. I can breathe, able to soak in every beautiful moment. But, suddenly a sense of panic surges through my body. My heart feels as if it skips a beat and I feel as if I cannot take in enough air to satisfy my deprived lungs. My mind begins to race. 

The song of the cicadas tears through my peaceful perfect moment. Their song echoing through every part of my soul. My heart sinks. Those tears of gratitude are overtaken with those of fear. How can the loud hum of a bug set my soul into panic? The sound of the cicada has always been a reminder of the next season, Fall and therefore Winter. When I was very young I was told the cicada's song meant six weeks until the first frosts of Fall. I am frozen, myself, with panic. I am desperate to hold onto this season filled with so much life. 

 

The Seasons of CF

It's been brought to my attention repeatedly upon looking back at my journey with CF how much it emulates that of the seasons. Summer is filled with so much life, stable health, and the renewed feeling as if I am invincible. But the sound of cicadas reminds me of my past seasons of Fall, time when my health begins to take an uncontrollable turn. Fall turns into the desolate and harsh season of Winter where CF seems to have a strong relentless grip, trying its best to break me. 

The thought of the coming seasons terrifies me. I think back to last year's Winter and a sense of panic churns in each breath I feel pass through my lips. I stop for a moment and take a deep breath, reassuring myself I am indeed still alive. I pay careful attention to how the air passes through my lips into my lungs, making sure that I have not missed any signs of an impeding infection that may be ready to bring me to my knees. I silently plead with my body, with CF. If I could just stop time... If this season could just last forever...

Making the Most of Certainty

But I know CF doesn't work that way. It doesn't care the plans I've made, the new goals I've set, and the passion for life that is ignited within my soul. It doesn't care about my immense love for this vibrant season. With the sound of the cicadas I feel that always present sense of urgency only intensify. Have I wasted any time? 

But, I must remind myself to breathe. I've been given today, and I feel I must thoughtfully live in every single beautiful moment. I've been graciously gifted this beautiful season, I must make the most of it, never knowing what the next season will bring. 

There's no certainty in tomorrow, for me or for any one of us. There's only this beautiful moment we've been given. Breathe in the beauty of the season and the life that is abundant all around. Take a moment and step outside to listen to the cicadas. Let their song remind us to live fully for today, always aware of the certainty in changing seasons. Whatever those changing seasons may hold, each will contain its own beauty, life, and potential to be unforgettably amazing. For each and every season I will be truly grateful, always finding the beauty in every breath no matter the season of CF. Each of you is what helps make this season even more beautiful. Thank you from the depths of my heart. Love to you all. 

Step outside and breathe in the beauty of this season you've been given. 

Fine - Guest post written by Kendra Vander Linden

If I just cling to these times a little tighter, if I just love her a little more, if I just push her to do a few extra treatments, remind her to slow down, she’ll be fine. She’ll be fine. I have no idea how many times I have said these or similar thoughts to myself. How many times I have tried to convince myself that I can control CF and its hold on Ashley’s life and our relationship, even if no one else can.

Ashley and I fell into each other’s lives in a hodge-podge of Augie experiences. I also married her cousin so now I get to call her family as well. She has always been more than a friend to me; she’s more like my sister. We can talk about anything, hot glue and craft together, and share a love for sushi and Disney movies like no one else I know.

In the past few years, our relationship has changed. It’s harder.  And it’s because of CF. We are now moving through life stages that don’t match. It was so easy when CF was a distant onlooker, present but never too personal. We got married and graduated college around the same time, started jobs, went out at night, laughed, and vacationed together. Even when Andy and I moved to Minnesota we kept our spontaneous and easy friendship full of trips and experiences.

Then CF reared it’s ugly head for the first real time in my relationship with Ashley. Life got messier. She was so open and honest with me about what CF was like, sharing her medications, treatments, the pain of getting out of bed in the morning. Even though life was messier, she let me into her world. I clung to our relationship even more. She’ll be fine.

Soon after, Andy and I found out we were expecting our first baby. I was so nervous to tell Ashley. I knew she would be so excited, but this was a life stage we couldn’t enter together, as most friends long to. As I told her, I knew she could see the guilt and pain in my eyes, just as I could see the pain and “what if” in hers. Life got messier, and I tried to let her into my world they way she had shown me. She celebrated the joys and took part in my struggles the same way she let me with hers. Ashley and Mark are Ruby’s Godparents, and watching them love her and seeing Ruby run to our window yelling, “Ashy, Mark, wha-AH-YOU?” fills my heart with so much joy and pride. I love the relationship they share. Even then, I can feel CF looming. I sternly convince myself, she’ll be fine.

In the past year and a half, I have become so incredibly selfish with Ashley. As CF continues to make itself more intimately known, I long for the days when it was a distant onlooker. Doesn’t CF know I NEED ASHLEY? Every time I would try to think about the harsh realities of the future, I’d cling tighter. I want more time. I want more Ashley. I struggled with the thought of the future. I pleaded with God for a cure. For Ashley to be the exception to CF’s selfish truth. When Ashley was admitted to the U of M, I knew she wouldn’t want visitors. I can respect that. Who wants to see healthy people and make small talk when you feel awful? So when she asked me to come, I went as soon as I could. She’ll be fine.

Talking with her that day, crying with her, meeting her doctors, and seeing her treatments was so terrifyingly beautiful. Watching my friend handle this life with such grace, strength, and dignity was amazing. I on the other hand, bawled like a baby my whole way home. But something changed for me that day.

“Some of us think holding on makes us strong; but sometimes it is letting go.”              -Hermann Hesse

It’s in the moments where I step back and think about Ashley and our relationship when I can let go and let myself admit, she won’t be fine. At least not in the everyday sense of the word fine.  Who wants to be fine anyway? Ashley takes more out of everyday and touches more people’s lives than I ever could. She reminds me to get the most out of everything and to be thankful for every experience, good or bad, because it shapes who you are. Letting go of my expectations for our relationship and the future means I can enjoy and love Ashley even more.

I was wrong. Our relationship isn’t harder. It’s more raw, honest, and full of love than anything. It’s real, and I cannot wait to see how it grows. Take that CF.