Grace in a Time of Change

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Aimee Lecointre

Treatments for cystic fibrosis have come a long long way in my 35 years. It’s kind of mindblowing to think about all the advancements I’ve seen. When I was diagnosed with CF at two weeks old, the doctor told my parents that the life expectancy wasn’t great, but to stay hopeful because a lot of research and progress was being made. I don’t think that doctor knew just how right she was!

In the past year, I’ve experienced many benefits from newer medications for CF, as well as some treatments for a rare type of arthritis I developed around five years ago. In some ways my quality of life has improved dramatically, for the better. But I’ve found myself really struggling to acknowledge and celebrate these improvements.

In the past couple of months, with help from my therapist, I’ve realized that a lot of my struggles with this comes from waiting for ‘the other shoe to drop’. I’ve been waiting for some other complication or side effect to come along, because that’s how my life with CF, and other health complications, has been. It’s always seemed that when one area of my health improves or stabilizes, another starts to struggle.

Bodies are complex and complicated. We joke around in my family that if someone is going to get some sort of rare health issue, it’s gonna be me. And I often say that CF is the disease that keeps on giving, even when we don’t want what it’s giving out. We make light out of what truly feels like my reality. Humor, even when it’s dark, is a coping skill I often find myself turning to. Like a matter of, if we aren’t laughing, we’re crying!

I also struggle to acknowledge improvements in my health because of guilt I carry knowing that not everyone has access to some of the medications and treatments that I do. And a small part of me wonders if I share ‘too much good’ that others will forget CF is still very real, and that they’ll no longer understand or be as understanding, when CF rears its ugly head and it’s time for another hospitalization or something. In fact, I’ve already experienced this with a hospitalization back in January. I was asked a few times why I was there if I was taking this new medication that’s supposed to be so amazing. It’s not that I want people to think of me only as a person with CF, but I don’t want them to think we no longer need to advocate for CF, that I don’t need to still maintain all my treatments to stay healthy. Honestly, I’m not even sure how to fully explain it. I’m still working through it all, and it often feels complicated and beyond words.

But I’ve started to realize that we can feel more than one way about something. We can celebrate the benefits of new medications, but also be frustrated with side effects. We can acknowledge how certain treatments have helped us, but also have anxiety that it won’t last long. We can be thankful to have access to helpful treatments, but also be angry that we struggle with other health issues. It’s not black and white. Humans have a whole wide spectrum of feelings and emotions, and there’s no clear cut way how to feel about something. It’s going to be different for each of us. And whatever we are feeling, it’s important to remember, that it’s okay to feel how we feel, and all of our feelings are valid. Even living with the same disease, we all have very unique experiences.

Realizing this, and reminding myself of this often, has helped me to better acknowledge, and even celebrate, the ways in which my health has improved. It’s allowed me to better share the joy I experience, no matter how small the improvement, while also still acknowledging how frustrating some of the side effects are.

Another thing I’ve learned is that when you begin to experience things for the first time in your life, like improvements in your health from new medications, it can be hard to wrap your mind around all the changes, even if they are good. I’m learning to have more grace and patience with myself, and I hope this reminds you to do the same.

 

Help Others Live STRONGER and LONGER- 

      

 

 

Aimee Lecointre is 35 years old with CF and is currently living in Salt Lake City, UT. She is a certified Nutritional Therapy Practitioner and registered yoga teacher. She is passionate about helping the CF community through movement and nutrition. In her free time you can find her hiking the beautiful mountains in UT, creating in the kitchen, doing yoga, skateboarding, writing, or reading! She’s a  yoga teacher with CF Yogi, a virtual yoga studio for people with CF. You can visit her website at www.thenourishedbreath.com, follow her on Facebook at The Nourished Breath or find her on Instagram @thenourishedbreath

 

 

 

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

***Please speak with your physician before making any changes to your CF management***

 

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