Still Lost but I have a Compass

It has been another eventful week. We have had excellent weather and Cali and I have spent much of the time outside. I finally got all the ice off my deck with the help of Daddio and now it’s just one huge suntanning platform from 2:47pm-3:58pm give or take a minute. I am finally noticing the longer days. With that comes spring, my absolute favourite season by far. Winter and Summer are relentless for me health wise and Fall is just basically a prelude to crappy dark and bleak winter. Spring always wins. I managed to get 14 days of camping booked for April and 5 days in May so far. That being said we are only 2.5 months away from the start of camping season. I am looking forward to it immensely. We are on month 26 of this pandemic and it is getting to be just too much. For those of us with health issues or co-morbidities as referenced in the media, I have high risk of things going wrong if I contract the ‘Rona. I am boosted and feel somewhat confident but I choose to not expose myself to unnecessary situations. Yes its been 2 years and 5 months since my last hot vacation and I am yearning to head to a beach in the sun but I’m not an entitled jack ass, the world owes me nothing and I am a responsible human being. I am also grateful to be alive. My highlight of the week was getting a visit with my friend Brenda, who spoiled me rotten with the very best puzzle of all time, steak fajitas, chicken pot pie, carrot cake, chicken noodle soup and a beautiful bouquet of tulips. I don’t think she realizes how much that lifted my spirits, Thank you Brenda if you are reading this. You made me feel like a princess.

This year I turn 50. I was supposed to expire 43 years ago. I was never meant to play sports, go to university, get married, start a foundation, be a spokesperson or leave a legacy. I have lived 5 lifetimes because I did not want to waste one minute of my life. Some days I am sloth and contribute nothing to this world but most days I go out of my way to make my life or someone else’s life better. Simply by sending a card or take time for a chat or just leave a note on your car door. There are so many ways to make an impact in someone’s life by simply being kind. We have lost sight of this while we all fend for ourselves these past 26 months. Kindness has been replaced by desperation to just get through a day. Grief is compounded, anxiety is compounded and hatred is compounded. It’s a very hard life to navigate right now for everyone. My point is that we all need to take one step back, take a deep breath, and reset. Find one or two things in your day that make you smile and then do that same thing for someone else. Deal? Whose with me?

In regards to my health it is fine. I thought that my diabetes had stabilized and then I am finding that I am having lows everyday, which are dangerous. So there’s that. I can’t say great because it isn’t. I had hoped that trikafta would give me a feeling of wellness. it has not. It has given me the ability to do all my treatments and physio to maintain a new sense of stability. I am very grateful no doubt and don’t misinterpret this as doom or gloom. It is not. Before I started this drug I said if the only thing I get out of it is less mucous and no coughing then I have won the lottery. I have won that lottery and that part of life is absolutely incredible. It came with a price unfortunately with new side effects and symptoms to contend with. That perfect day for me will never come. I know that now so I have to learn to live with all the changes and appreciate what is working. I was reading a blog by someone else who has been on trikafta and she talked about her identity crisis. She’s right. I am having an identity crisis for sure. She also talked about her long term side effects that are really making her life miserable, even though she can breathe once again. This drug is just that, a drug. Not a cure. It fixes the broken DNA chloride channel but with it, it alters how the body responds. Many patients are dealing with crippling anxiety or unbearable insomnia, she is dealing with trikafta fog and it’s making her life worse in some ways. Now how can such a beautiful, mind blowing drug make you worse. Well it just can. ITS. NOT. A. CURE. I can’t lose sight of that. It is however the best drug treatment for cystic fibrosis in over 40 years. Probably since they invented digestive enzymes. Prior to enzymes patients were dying from malnutrition within months of birth. Kids born today with cystic fibrosis can look forward to a long healthy life with little to no disability. I am so jealous of them but very happy they don’t have to trek my path because it’s hard.

My current outlook is bright followed by a healthy dose of skepticism. But it’s better than my life pre-trikafta. That life was starting to end. I don’t know what’s in store for me but I feel fortunate to look further than a month or two ahead. Planning a future has never been a possibility even though I have lived a future I once thought I couldn’t. This time I am very confident (about 89% ) that I will still be here for Christmas 2022 and that’s new for me, thanks to trikafta. It is a privilege to live this life.

Until next Sunday try to do something nice for someone. Be the reason someone smiles. Love and paper hugs to you all.

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