Trikafta: Day 4- Who am I?

So it was another stellar day since my re-birthday on Monday. 96 hours almost to the hour I am fitter, faster, fatter, and I have colour in my face. My pace feels like warp speed compared to the turtle pace of my normal. Today, I would do a task and instead of taking 15 breaks, 20 coughing fits and lots of frustration, I would just move on to the next one. Wtf? Talked with my doc again and he said it’s pretty rare that you have such an instant response and 4 days in be cough free. I’ve never been so grateful for being so broken. I spent my entire day in a state of gratitude. Just grateful for each deep, long, un-encumbered breath.

Physiologically speaking, I feel taller. True story. I feel like my Quasimodo hunch is easing, my shoulders are relaxing, my spine is stretching. The abdominal pain is gone for now. I have a very sore rib cage and it is from breathing deeper and longer, stretching the thoracic cage thus sore from actual use. My lungs basically stopped at a wall of inflammation and infection. My sinuses feel spacious, if that makes sense. I haven’t used my oxygen at all and after my shower tonight my pruning was less pronounced. I am a walking, talking, miracle.

2 nights ago

Mentally, I am struggling. It still feels too good to be true. When do I wake up from this dream. 96 hours ago, I was broken, lungs full of mucous, absolutely exhausted, struggling to wake up, force feeding myself, adjusting my insulin, on oxygen most of the day and night, dreading all the tasks on my list. 96 hours ago I was sick. I DO NOT FEEL SICK RIGHT NOW. Don’t get me wrong, I am still living with damaged lungs, damaged pancreas, poor digestion, diabetes and myriad of other issues. I will still need the sinus surgery, I will still need insulin and I will still need enzymes to digest my food. I will still need oxygen but I will only need it for intense tasks or just to protect my heart. So, as for my mental health, I am trying to come to terms with this pivot. It’s huge. CF has defined me for so long, I’m not sure who I am outside of this disease. I know I am more than this disease but any of my admirable qualities are due to my constant battle against CF.

Summer clean up
Summer set up

Tomorrow, I am heading out for a new first with the new body, camping. I am looking forward to walking farther and longer, helping Dad with set-up and not using my oxygen. In a trailer the leash is a bit extra. Everyone trips up in it and its a constant reminder of my failing lungs.

Today I was busy doing chores from 11 am until 7 pm. I was finishing my garage and backyard, I was taking stuff downstairs, I was walking Cali, picked up Cali’s meds, I was doing laundry, washing carpets, vacuuming and now I am packing. 96 hours ago I would only have energy to pack for camping. I was dead but now I’m alive.

The leash I’ve left behind

All these little victories are just beautiful reminders to me and you that the only things that matter in life are health, love, friendship, and family. A new car cannot replace a deep long breath for me. Until tomorrow, remember it is still the little things. Feel free to tell me your little things maybe we share the same ones…

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