These past couple of years I have been enrolling in a lot of clinical trials. Hoping that maybe a new med can help me stay out of the hospital more. My Cystic Fibrosis has always been a rollercoaster with new infections and more hospital visits. But summer 2018 was when everything changed for the better, that is something I’ve never been able to say. I’ve never had the upper hand. I’ve watched my peers get these new meds and thrive, and it is finally my turn. Four years of placebo controlled trials and I am finally receiving the actual medication. I have never felt so healthy before. Discussing lung transplants and breathing with less than half of my lungs, To then being a month on a new medication and breathing with 60% of my lungs. I haven’t been this healthy since I was 9 years old. It has taken so long, and I have been let down so many times.
It’s been difficult, a big change from not breathing well to all of a sudden be able to fill my lungs. I am still in shock and don’t understand. I am so happy and blessed but It just seems wrong, or not real. I am afraid to talk about it, thinking I might jinx it. When you are the healthy one you notice the sick more. When your feeling terrible you see others around you and often feel equal. Now all I feel is guilt, I feel wrong taking these meds even when I deserve them. I see others who are not able to take them due to their health being extremely poor. I once looked at others in jealousy because they were the first to take the med I’ve been waiting ages for. Now I’m in their position and I understand. It’s hard especially when your still involved in the CF community and see others who aren’t doing well. It almost makes me want to be sick again, which is something you would never think someone could say or want. I don’t understand my thoughts and there’s no way to explain them.
Even though I’m healthy I still need to do my treatments and living at school I haven’t been doing them. I feel so much guilt for that, going home and my family seeing Im not doing what I need to do. I guess I just want to be normal so bad. I don’t want to do CF things anymore I just want to move on. But I am in the wrong, I need to stop wanting to be normal and start wanting to be healthy. I can not wrap my head around this new reality that I’m living and breathing. Why am I feeling so much guilt.