Trikafta: day 5- Ups and downs

So my last night was exhausting, Cali had some stomach issues and she wouldn’t settle down. She would hop off the bed, pace around the house and then come and put her face in mine. This usually means her anal glands are full. So from 3 am – 7 am we tried expressing the glands twice, sleeping on the floor with her and then settling on the couch. This would normally just gas me and it would take a couple days to bounce back. When I don’ get enough sleep my immune system crashes and is the time I am ripe fo catching something. Thankfully my immune system stayed intact and bounced back. After a 2 hour nap. Nicki 2.0 emerged once again. My friend Sonal came over this afternoon and gave Cali a Cranial Sacral treatment. I get them often but we have found that Cali loves them and responds well. Right now she is resting very peacefully.

I have had to deal with a wicked sinus headache right in the spot where the benign tumour is sitting on my optic nerve. I can still feel it pounding. It’s been nauseating at times. I’m not complaining. All these side effects will resolve themselves, I am just not used to feeling other kinds of symptoms beside my CF ones. Although I am very used to pain so nothing new there. I am however not used to having a bad night and than a redeeming day.

I took it easy but still got all my camping stuff packed, six days of Cali’s food made, cookies made, laundry done, bathrooms cleaned, garbages out along with cleaning out my garage fridge and freezer. As I was doing these things I was very aware of how easy the were to do. Like its the way its always supposed to be. I think I coughed 3 times today. Not a joke! The mucous is liquid. New things I noticed: My face is much less oily, my hair is softer and my mouth is going through some type of metamorphosis. I am normally dehydrated. I think that the water/salt channels are working and my normal PH balance and rehydration is in full force.

I did one more thing I haven’t done in a thousand years. I laid on my back. Nicki 1.0 was not able to ever do that as the mucous would move into my airways and I’d cough uncontrollably. I absolutely missed being able to do that. I think the last time I did that was in university.

Laying on my back

Tomorrow I will see how my camping adventure improves. Looking forward to my first ‘easy’ camping trip in 6 years. Lots of firsts to be had tomorrow. It’s been 5 days but yet I feel like my old life was a 100 years ago. It’s so unreal but magical and magnificent.

My sole focus has been to inhale and then to exhale. I haven’t been able to do that in 40 years. I have held my breath my entire life and now I’m no longer waiting to exhale. I’m letting go. The unencumbered breath is the most beautiful thing in the world. Without we die. Take care out there and find the little things that matter and hold on tight.

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