Trikafta Day 50: Just Living The Dream

So I have been building my very own Santa’s workshop on the main level of my house. I have 26 bags of Jelly belly’s, throw blankets, exercise bands, colouring books, markers, eye masks, ear plugs, pillow cases, pencil cases, gift cards, first aid kits, light sets, tumblers, flashlights,pill cases, lip balms, gummy bears and notepads. I am building the hospital Smile bags that I intend to get delivered to clinic next Wednesday. Its been a huge job but very rewarding. This has NEVER been done for any CF patient in Canada. It’s been a long wait. I can’t wait for the first patient to send out a tweet or message showing how awesome it feels not to be forgotten behind those hospital room doors for 2 weeks.

I am finding that I am using less and less oxygen throughout the day but at the same time needing it for the running of 10 sets of stairs. I feel super grateful for this gift of living again. I notice little things, like not needing a full 2 hours of physio or going straight to bed and not needing to hook myself up to my night feeds. It is very very liberating. No one can understand this type of freedom.

I still have some side effects but generally speaking its no bother. Just adjust my sails and carry on. This time of year is normally quite hard on me because going for walks or outside is harder because I have more weight to carry with my boots and jacket etc. And it was work just getting those boots and jacket on. To add to that, putting Cali’s boots and jacket on made going for a walk an arduous task! Now it’s doable and much less challenging.

I am slowly gaining the weight and feeling pretty fugly but will get that sorted out. My diet has been atrocious. I have to start eating healthier. For 49 years I was allowed to eat whatever the hell I wanted. I always needed the calories and now I don’t want to do that. I want to fuel my body for success, not just for the caloric Armageddon.

I got my newest feeding tube changed out last Wednesday. It is not the garden hose and the procedure was much less traumatizing. I need to stabilize with my weight post trikafta before I move to the next tube which sits flat against my belly. The current one is bit of a knob that sits about an inch off. I am ok with dealing with it for the next few months. Like I said earlier, I am not willing to give up my feeding tube. It saved my life once and it may well save it again. My future is always going to be uncertain with the amount of damage in my lungs. At the same time I feel more comfortable living right now. Not fearing a setback every day or waiting for the other shoe to drop. That is how I have felt for the last 10 years…just waiting for the worst to start.

On that note I am just enjoying all these slight but beautiful things that have changed my life since October 18. The deep breath, the lack of mucous, the lack of waste baskets full of Kleenex smothered goobers, the energy in the morning, the ability to get Cali’s meals etc prepared before I start my meds, the ease of walking around the house, the fun in staying up late to watch the Calgary Flames, the joy of playing with Cali, the ease of a quick row, the long chat with a friend, the setting up of an assembly line to build the hospital bags, the ability to vacuum and clean my bathrooms in the same day! All of these little things add up to my feeling of true freedom. Freedom from being a prisoner for so long in my own body. I wish everyone could feel this because it is incredible. I will NEVER take it for granted. Until next Sunday, stay awesome y’all!

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