The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
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The physical symptoms of cystic fibrosis can be debilitating. But the emotional trauma brought on by hurtful comments, financial burdens, and anguish my loved ones have faced because of my disease has been just as painful.
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Since the loss of my sister to cystic fibrosis, grief has hit me in waves. Sometimes it feels as though I can't breathe. Despite this, I have been able to function and keep going. That is what Claire would have wanted me to do.
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The hope that came with the authorization of two COVID-19 vaccines has been coupled with anxiety and frustration as I wait.
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As the mother of a toddler with cystic fibrosis, I found it hard to deal with the daily grind of treatments, appointments, and insurance claims on top of all other daily responsibilities. After months of suicidal thoughts, I finally reached out for help.
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When I feel anxious, I go for a run or do a crafting activity to relieve the stress. I used to think I didn't have time for this, but now I know that I need to make time to take care of my mental health.
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After careful thought, I decided to add medically prescribed cannabis to my care regimen. After using it for six months, I've noticed an improvement in both my mental and physical health.
