I did it.
I got my act together enough to make this blog happen. If you believe it or not, this blog has been a distant thought for almost 4 years. I continually put it off for when I was sicker, when I had more time, or when I was ready. A close friend was quick to remind me that the blog might never happen if I don’t begin now, in my present where I felt my voice was unnecessary at this stage. She was right. I am just now beginning to be vocal about the reality of my CF on social media after almost 20 years of “being a CFer”. Why? I really don’t know. I think it’s a number of things that have changed my perspective and given me the bravery to be honest and transparent.
First, Salty Girls has played a big part in this change. In April, I posed for a photo book about women fighting CF and the many challenges we face physically, mentally, and emotionally. It was my first time directly meeting other women with CF and knowing that we had similar scars, schedules, thoughts, fears, and never ending coughs. After the shoot, I got in the car with my husband; my heart felt full and I smiled, “They all coughed like me.” It sounds silly now, but that brief sense of community has changed me forever. I feel a duty to my fellow Salty Girls and to myself to educate people about our lifestyles and the bravery the world doesn’t see.
In addition, I am sicker despite my compliant efforts. In college, I did all my treatments, IVs, pills, etc., everything that someone with CF has to manage, but I was healthy enough to compartmentalize my disease and my other life. I lived in two separate worlds and I had enough energy to be present in both, while keeping them as distant as possible. That has changed. I have aged and my disease has gotten worse. Subsequently, my CF is everywhere now. It has grown into almost every aspect of my life and I would be stupid to continue to try to prune it, instead of embracing the change. I can’t eat, breathe, sleep, or move without CF being present. Basically, I can’t exist without recognizing my CF as an important aspect of my life. Every decision, every part of my day, and a very large part of my identity includes cystic fibrosis now.
And so, I am scared. I am scared to write about my life and my experiences with the belief that people might care. I want my friends, family, and strangers to see the reality of living with a brutal chronic disease, but more importantly I want you to see the joy that can persist in spite of pain. I want to put a face to that universal struggle of being happy in your present when things haven’t gone the way you planned. I believe with awareness comes understanding, followed by empathy and lastly, change. So, welcome.
Flowerlungs 
Thank you for sharing. Your writing and story are so beautiful, your daily strength leaves me speechless. I’m looking forward to reading more.
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Thanks for reading Carrie! ❤
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Thank you for writing your blog! Good to see your pictures and hear about how you are doing and where you are with your disease. I prayed for you right now and I am encouraged greatly by your optimism! You have a lot of daily challenges and are taking it in stride! not many would in your situation! Keep going!!
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So nice to hear from you! I hope you are well. Thank you for praying for me and for the support!
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Try to stay as healthy as possible. Miss seeing you in clinic.
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I congratulate you on your bravery to post this and to allow those of us that love you to know more about you. I know you are happy–I see your joy in your FB posts and in those of your family. And I see, every day, the difference you have made in Natalie’s life. Please always remember to include this accomplishment when listing your personal assets! You are a very special and amazing young woman.
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Your blog is touching and I hope it continues with optimism for the future. The daily challenges are tough and knowing you are inspiring others with your words should give you comfort.
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I don’t know if it’s just because I had a stressful day or what but reading this made me cry like a baby. I am so lucky to have you as my role model. The positivity that you exude while dealing with these harsh realities on a daily basis is awe inspiring.
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Thank you my Kitty Kat! Love you so much!
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I’ve known your Mom for a long time. You need to know how many people you will touch, help and inspire by writing your blog. After one heck of a day at work (14 hours) , I suddenly feel better!!. Thank you. Keep up the good work.
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That is so very sweet, Elaine. Thanks for taking the time to let me know that. I appreciate all your kindness.
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You are an amazing young woman. I wish you success in everything you do. I am honored to know you and love you very much.
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You are such an incredible young lady! Your passion and goodness shines through your heartache. You are so strong and so beautiful! I love you 🌻🌼🌻🌼🌻🌼
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Thanks Jack! Thanks for always supporting your choochie! 💗
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Inspiring. This is a beautiful way for you to show what most of us have difficulty understanding. I commend you for your bravery and sharing your struggles with the world. Please know I am praying for you always and stay strong girl.
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This was such a wonderfully written and honest blog post. I really admire your bravery for putting your life out there. I think you have a lot to offer this world Janeil. Keep fighting and stay well.
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Janeil you are so good. A good, genuine soul. I can not completely understand the physical manifestation of your struggle, however your optimistic views, despite a constant black, spikey cloud, I will be grateful for, daily. Please keep writing! Your conscious effort to stay close to the light is contagious. I wish you the utmost support and love on your journey! Do not give up.
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Thank you, Liz! You are so, so incredibly encouraging. The next post will be up in the next couple days. I hope you are doing well and staying close to the light as well 🙂 Thanks for making my day.
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Hi Janeil! I found your blog through your post on the CFF. You are such a gifted writer and describe your life with this disease in a really beautiful and positive way. SO much of what you’ve said, in this post in particular, resonates with me and my current CF struggles. I just wanted to say hi and thank you for sharing your story with such honesty. I can’t wait to follow along!
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Katharine, Thanks so much for the encouragement! I am glad you could relate to the post and understand those struggles. I follow you on Instagram so I’m so happy you were able to find this blog. Thank for commenting and reading! Best to you cyster! 😊
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