Wow! It has been a shit-uation so far. The world feels absolutely, profoundly, sadly, off its axis. There is so much chaos, uncertainty and fear once again. This pandemic has crippled the lives of many while taking the lives of even more. We have governments failing, businesses struggling and individuals falling between the cracks. It’s difficult to see any good. I am naturally an optimistic person but this doom and gloom is a lot to digest mentally. My bright light is that my family is safe…so far. I have just been living in my little 2600 sq.ft bubble to ensure I don’t catch the ‘rona. I am grateful that even though so many people are getting covid that they are mildly affected due to their vaccination status. So in a nutshell the vaccines work beautifully. Now all that being said I, personally, am doing extremely well.
I have so much to be grateful for and the most grateful for access to the miracle drug Trikafta. I started on in almost 4 months to the day. October 18, 2021 my new birthday. In these last 4 months lots has happened to my body. Some good, some not so good but on the whole a huge win for me.
My biggest struggle at the moment is gaining weight. Trikafta seems to have altered my ability to effectively digest food . I am taking more pills but still suffering daily in the loo. It’s concerning but not a deal breaker. I’ve added a new stronger probiotic to my arsenal and hope it helps turn things around. I needed to go back to doing night feeds to counteract the loss of nutrition during the day.
I have also had a bit of a setback in the lung department. I’ve needed oxygen for more tasks than before. I am still running at 100% but having to add the O2 back into the mix. Honestly, I think I was a bit premature to give up the pipe so soon. I felt so good at the beginning that I naively thought that I was cured. Remember that optimist in me? yeah she was a bit delusional. That’s ok. I am now firmly grounded in reality. I am back on my full treatment routine I had pre-trikafta. My body has dictated this need. So yes I am still doing the 2 hours of meds twice a day and the physio and the night feeds etc. Am I disappointed? Little bit but not enough to cloud how happy I am with not coughing and not drowning in mucous everyday.
My biggest lesson l learned is that I have much disease in this body and thinking that a simple drug could change that is a bit myopic. Also going to law school will remain a dream. Even with this increase in energy I am not even close to having the energy required to achieve that goal. I won’t be going back to work or starting a new career. That ship has sailed.
So now what the hell do I do with myself? Yes, I feel pretty good but not well enough to change my path. That’s been difficult to come to terms with. I do have some immediate challenges ahead of me. I finally have that sinus surgery booked for 4 weeks from now. That is freaking me out to no end. The healthcare system is falling apart here in my city. I have to go under general anesthesia which means I will be intubated. The concern by my doc is that if the docs are unable to pull me out of the general anesthesia safely, I will need to be moved to ICU. An ICU that, by February 17, will be absolutely flatlined, pun intended. Talking to my anesthesiologist yesterday, he assured me that he would take good care but he’s not God. I am contemplating postponing for better times even though I desperately need this surgery. It’s tiring being so stressed out all the time. Let go and let God I guess.
On top of all this uncertainty we just endured over 4 weeks of bitterly cold temperatures. It is so hard on your psyche when you can’t even go outside for a simple walk. It’s also very difficult for me to breathe when the air being exhaled and inhaled freezes immediately. My body has to work so hard to do the simplest of tasks. I am not sure that I would be tying this blog from home and not the hospital if it wasn’t for Trikafta. That was extremely hard to endure. I am guessing that I may have been put on IV antibiotics. Although I am also not God, so who knows. I have amazing neighbours around me who shovel my driveway and sidewalks and bring in my garbage, recycle and compost bins for me. I am so grateful for them. Without them I’d be that asshole neighbour that never takes care of their property. One night it took all my might to get dressed up, boots on, toque on and 2 jackets on to get my recycles out. I couldn’t skip that week because my recycles were overflowing from post Christmas. These are my Everest’s.
On the bright side the weather finally broke 3 days ago and Cali and I have been enjoying our walks tremendously. Even -14C is now a great temperature to go for a walk compared to the -35C plus windchill. Everything is relative.
Right now I have been having these small panic attacks that happen as fast as they go away. They make me feel lost. They pop up out of the blue with no particular thing precipitating them. Maybe my subconscious is trying to deal with the uncertainty of life right now. When these happen I focus on the constants in my life that I have control over. My safety, taking care of Cali, exercising, rowing, and being grateful for not feeling sick at the moment. I have added in several self care coping techniques to my daily life like stretching, pranayama, infrared sauna, turning off my phone, playing with Cali more and doing some crafting. Even though I feel great, my life seems quite difficult to navigate at the moment. I know that I will get through this and it helps to talk about it. I did get my first week of camping booked for April 11th, 2022 so there’s something to look forward to.
I know that many people in the world have just moved on and are living life as if it was 2019 and good on them. I am not one of them. I have more on the line.
The big revelation for me is that in 186 days I will turn 50. More to come.