January 25, 2022
Hello Again!
It's been over a year since I've last blogged. I have had a lot of passion projects since then. I started up my own stores (XO Thrifts, Little Leaf Thrifts) selling home decor and clothing items. My stores have since been on hiatus for quite a while as I started feeling overwhelmed trying to manage my relationship, parenthood, my health, our household, etc and those things will always come first. I LOVED working on something that made me feel like I had a purpose but it wasn't enough to sustain me financially to be worth it in the long run on top of managing everything else. I started realizing I was becoming addicted to sourcing items and ended up accumulating too much which contributed to the feelings of overwhelm instead of helping me escape. I also started a Podcast at the time which was quite fun and something I hope to return to shortly. I have found myself in over my head in ideas and projects, now that I am not rapidly declining and actively planning for my transplant or death - there is life to live and it is fascinating!
As for my health, I'm alive! Trikafta has truly saved my life and I'll preach it 1,000,000 times, because I can easily say it is the reason I still have my original lungs and I'm here today. I am enormously grateful and blessed to still be alive and even more pleased to finally be capable of living like a semi-normal human. My biggest struggle from day-to-day is chronic pain, which is limiting and debilitating to an extent, but I can sleep in my bed again instead of on a reclining couch connected to a bi-pap machine. I can laugh! I can occasionally jog short distances. I can walk to the bathroom without throwing up from coughing or getting a fever and having tachycardia. Life is radically different on Trikafta. I do still have Cystic Fibrosis, and my lung function is still only 44%, which is actually quite good considering the permanent damage to my lungs and issues I experience pre and post Trikafta. My weight fluctuates. The downside of Trikafta is the neurological and mental side effects, of which there are many and I am seemingly affected by most of them. I have gotten incredibly lucky with the timing of Trikafta coming out on the market, had it been introduced any later and I think my circumstances would be quite different.
How tremendously difficult it has been to go from expecting to die most of my life to planning on what I'm going to do with my time. It has been an adjustment to say the least, and something I never want to take for granted. I do tend to overload myself with to do lists that add to my stress because I never want to go back to what life was before and that is something that deeply haunts me. I do my best to try to occupy my mind and body, but also to balance that with rest and burn out, which is difficult. I never realized the sheer amounts of anxiety and panic that would come at remembering the medical tests and challenges I've overcome to get this far. There has been a lot, and I marvel at those who have undertaken so much more and are still doing their best to thrive today and be genuinely happy people. I think of the impact this journey has had on my family as well, and particularly to my son, Aiden. He doesn't remember having a "sick" mom. He still knows I am "different", and once helped me as a toddler to stay "well", even though "well" really wasn't well at all. He sees me take pills, do my inhaler, breathing techniques, hooking up my feeding tube, etc.. but he doesn't see or hear the constant coughing, throwing up, crying from pain, fevers, sweating, rocking back and forth uncomfortably, etc.. that is all gone. It's almost like it was a figment of my imagination, which is wild. It still hits me sometimes and feels incredibly real. It's hard to believe sometimes it was real and at other times it creeps back in bit by bit and I am terrified.
My biggest fear I think is losing the physical inability to function and be a mom again, while my mental was still very capable and aware that my body has failed me. There are many scary thoughts to go back to, and I think it's important sometimes to visit those and remember them to keep me grateful, and acknowledge the truth, but to keep it at an arm's length so I don't get swallowed up whole and consumed by it. I think the brain does an incredible job of shielding us from trauma in its entirety, thank goodness, but that doesn't mean it doesn't still exist and need to be dealt with.
In becoming "healthy," my life faces many new challenges on how to function as a person in society and in my household. It's been over a year or two since I started Trikafta and was taken off of the transplant list for being "too healthy". It's taken almost exactly that long to finally believe that this is my reality and that it might stay and last longer than any of us could've possibly expected. I've gotten plagued with viruses after Aiden started preschool. I tested positive for Rhinovirus multiple times, ended up in the ER once for strange and incredibly painful symptoms, and yet another positive result for Coronavirus OC43 (Not Covid-19, more like a cold). We are on our own journey with him as he likely has asthma, Cystic Fibrosis genetic screening results pending. He has also been plagued with viruses and one of them we both had took two months and several medications for us to recover from, finally. We both started wondering if we were ever actually going to get completely better again. I didn't know what to say, but to try to remain hopeful and positive.
I have spoken about the last year or so a bit on my public and private social media pages, but for anyone here who hasn't followed those channels - this is your update. I hope you are doing well. I have been wanting to blog or journal again, so I finally decided now is the time. I hope you make now your time, for whatever you want to do in your life. Don't wait.
-Sara ♥
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