HOLY TOLEDO KANSAS, FOLKS.
Today it’s been three whole years since being diagnosed with Cystic Fibrosis. In many ways it feels surreal, as much of the time it feels like I was just going through the diagnosis process last week. But indeed many things have improved, so I’m excited to share my thoughts on the ups and downs of learning how to manage and deal with CF.
I want to start by explaining my reasons for sharing these personal thoughts with my friends, family, and the internet. My goal of blogging and sharing hardships and joys is not to draw attention to myself or share “woe is me” moments of self pity. Not how I roll. My goal of sharing my struggles is in the hope that someone is able to relate to these situations and find hope and strength in the fact that someone else is going through similar struggles and is therefore able to stand in solidarity with myself and anyone else who is feeling the same way, whether they have CF or not. This is how we build community. This is how we stand together, grow together, and share joys together. Flowers grow through dirt and mud.
One thing that has been very fun and soul-changing this year is being able to create Hope in Focus, the photography project for children with chronic conditions as a way to help them deal with their diagnosis. Creating and planning this project has given me an outlet to share lessons I’ve learned these three years and use things I’m passionate about in a creative way. I am so grateful to the Phillips Scholars Program for this scholarship that has changed my life so much.
As I reflected on last year’s post, I noticed many thoughts I had still hold true today. I’m still learning and growing: getting used to CF or any chronic illness is a process and a journey. It’s not something that’s fixed overnight or even in a few weeks. And I’ve been learning that it’s okay to still be getting used to it, while also recognizing and acknowledging the progress I’ve made.
Although I stayed overnight in the hospital this year after not doing so since I was very little, I also spent less time in the hospital this whole year than anytime within the previous two years for testing, check-ups, and procedures. That was a big change, and I noticed it really helped me regain a sense of normalcy and balance. I am very grateful I felt fairly healthy this year; it has been a huge blessing. I finally feel like I am at “baseline.” When you are constantly in the hospital and are being tested and having procedures, you certainly feel like something is wrong with you, as it’s kind of thrown in your face every day. It becomes something that sits at the front of your mind and can start to affect you if you’re not paying attention, which started happening to me last year. I dealt with depression after not being affected by it for a few years and can happily say that with counseling, yoga, the encouragement and love of friends and family, and lots of prayer, I have been off of medications since Thanksgiving and am feeling absolutely wonderful. God is so so good and has been so FAITHFUL throughout everything.
There are new challenges that come with CF as I get older, and I will not lie and say that some of them don’t keep me up at night. It’s also been stressful lately with insurance issues and creating future care plans. But I am eternally grateful for a caring community of people who have shown an incredible amount of support the last three years over this process. I am thankful for roommates and friends that stay up with me until the wee hours of morning talking about life, parents who support me, and friends who take time out of their day to ask how I am and reach out in beautiful ways. I am constantly reminded of the BEAUTY people possess and give to others, shown by friends who give money, flowers, care packages, donations to Hope in Focus, time, and words of life. I want to share that last Wednesday, the day before my 21st birthday, my roommates threw me a beautiful surprise party where I was also surprised with a $2,000 check that friends raised to help pay for medications and hospital bills. YEAH. THESE PEOPLE ARE FREAKING AMAZING. I’m still trying to process their kindness, love, and radiating joy. To friends, family, random strangers, coworkers: YOU have made an impact on my life by doing these things that may seem simple: to me, they are the every day deeds that actually and truly make an impact on our world. So thank you!
And thank you to my family who have each sacrificed many things these last few years. I know this doesn’t only affect me, in more ways than one, so thank you thank you for putting up with everything that comes your way because of this. Your actions do not go unnoticed.
I still have difficult days. Sad days and days where I struggle. I still have stomach aches and still have pancreatic attacks that feel like I’m going to keel over at any moment. Mucus is a thing. BUT… there is so much to be thankful for. My lungs are still doing well, my weight is stable, and people are incredibly kind.
There is always hope in the darkness. I know I’ve said this many times, but remember that you are never alone in the struggles you face. We do not have to go through the same struggles to show compassion toward one another or support one another.
Thank you to everyone that has shown me grace and love throughout this process. Each one of you means so much to me, and I could never repay you for your kind words, funds, letters, texts, coffee, and prayers.
Have a blessed week, dear friends!
I leave you with lyrics by the lovely Mumford & Sons, who I was able to see in concert on my 21st birthday one week ago today, where I danced and danced and touched Marcus Mumford’s hair (yes that was a thing, no I will never be the same):
It freezes your already cold mind
Already cold, cold mind
And death is at your doorstep
And it will steal your innocence
But it will not steal your substance
And you are not alone in this
As brothers we will stand and we’ll hold your hand
Hold your hand
P.S. Thanks for being a part of this journey.
You can read (or re-read!) last year’s post here: https://flannelpluscoffee.wordpress.com/2015/04/28/2-difficult-long-and-absolutely-beautiful-years/
What is Cystic Fibrosis?
[Information taken from the Cystic Fibrosis Foundation website: http://www.cff.org/AboutCF/%5D]
Cystic Fibrosis (CF) is a life-threatening genetic disease that primarily affects the lungs and digestive system. An estimated 30,000 children and adults in the United States (70,000 worldwide) have CF.
In people with CF, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
- Clogs the lungs and leads to life-threatening lung infections.
- Obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.
If you would like to learn more about Cystic Fibrosis and ways you can help those affected by the disease, I encourage you to take a peek at the CFF website: