2 Months of Isolation

We have been social distancing for a full 2 months now. It is amazing to think how much our lives and the world has changed in 2 months time. 

Back in March I went out for a ladies night a few nights before everyone started thinking about avoiding crowds. It was so nice to be out with friend's from Kaylee's school. But I couldn't brush off this nagging feeling that maybe I shouldn't be out in public. The virus seemed to be looming. I had no idea that 2 days later Kaylee's school would have a confirmed case of coronavirus and our whole world was about to shrink very quickly. Kaylee's last day of school was March 13th. My husband's last day of work was around the same time as well so our little family of three (plus 2 cats) have been spending a lot of quality of time together.

At first, everyday felt a bit shocking. I would rush in the morning to check the news. This new normal felt so very foreign and almost unreal. But years of being sick and hospitals stays gave me the wisdom to know that people adapt. We can and will adapt. I have learned to adapt to lower lung function, to being able to do so much less physically, to functioning while ill and feverish, to the flow of hospital life, to existing while dying. I knew soon enough our family would adapt to self isolation. And we have. 

There are moments when the reality of everything hits me and I think, "Holy crap! There is a killer virus traveling around the world killing thousands of people and we have to wear masks, and avoid our friends and stay home as much as possible." But most days we wake up and put one foot in front of another. We do online learning, we mask up before going out, we do grocery pick up. We spend a lot of time in the kitchen cooking, baking and creating. We spend time being thankful we are together and healthy. 

It's not to say that everything is perfect. Online school is definitely not Kaylee's prefered way of schooling. And all that baking/cooking leaves a lot of dishes to be done. We miss our friends and family. We miss hugging those we care about and adventure. I oddly miss the grocery store. 

But humans are strong and we adapt. This surreal existence is starting to feel normal and we are finding our groove in this somewhat lonely, somewhat humdrum life. But we are alive and healthy(ish) and we have one another.

And I know from experience that I can adapt, but I am not naive to the fact that for some may struggle with this new normal and adapting might not come easily. We all have different life stories and we all have different struggles. Just know it is okay to not be okay. And it is always okay to ask for help.

New Normal Post Trikafta

I have been wanting to write about my post Trikafta life, but I am finding the words so hard to find. It is so hard to describe how much my life has changed in so many subtle and hugely obvious ways over the past 5 months. I am going to highlight the biggest changes I have felt.

• PRE: Treatments used to be such an exhausting all consuming part of my day. I needed to be ALONE because I would cough so hard and so violently that it took all of my focus and energy. I would get red in the face, break a sweat, gasp for air, and cough up so much mucus I needed a cup to catch it all. If it was so too soon after eating it would cause me to throw up from coughing too hard!  
• Post: I can easily play a board game, work on the computer, or hang out with my family while I do treatments because I never ever cough! I don't use up all my energy reserves to do treatments. Instead it feels like maintenance like brushing my teeth or combing my hair. Not particularly fun, but not exhausting, stressful, and painfully time consuming. 

• PRE: CF dictated everything about my life. I could not get out of bed before taking my inhaler. When I did get up I would cough and cough until I finished my treatments. In the evening if I tried to push off my treatments by a few hours (usually when we were having a fun evening) my body would revolt and I would cough and cough until I relented and did my treatments.
• POST: I can wake up, eat breakfast, stroll through my garden, and then settle into my treatments late morning if I want. I do not feel like my life revolves around treatments anymore and my body can function without using my inhaler. I went from needing my inhaler within arms reach at all times to feeling secure in knowing I can survive without it. 

• PRE: If I woke in the night and had to get out of bed (to check on Kaylee, to pee, etc) my lungs would "wake up". My heart would start racing a million miles per hour, I felt breathless and my coughing would begin. It was horrendous. I would often feel afraid that my body would quit after those middle of the night wake ups. 
• POST: I can wake up, go to the bathroom, come back to bed and fall asleep like everyone else. No racing heart, no panting for air, no coughing!!

• PRE: Every day was different. Some days I would wake up and my lungs would be okay, sometimes my lungs would be tight and congested. Almost every single day at some point I would feel BAD. Almost every day I felt like I was on the verge of an exacerbation. I felt bad significantly more often than I felt okay.
• POST: I don't notice my lungs anymore, they feel good every single day! I have days I am more tired than others or some days I feel off, but it is never because of my lungs. 

• PRE: Getting sick meant a few months of trying to get "well" again. Even a simple cold or allergy season made every single day a struggle. Even a small cold used to make my lungs react with inflammation so badly that I struggled to breath sitting still and felt like I may suffocate when walking even a few steps.
• POST: I got 2 bad illnesses since Trikafta. A bad fever followed by a respiratory infection in December and then Influenza A in February. With both sicknesses I felt awful, feverish, miserable. In December I felt so bad I was crying to my husband because I just knew when it hit my lungs I would be in really bad shape. In fact, I genuinely thought I may die. I waited every day for it to hit my lungs and for the inflammation to take over. The inflammation never came. I ended up on oral antibiotics because I was coughing up mucus, but the death grip my inflammation usually puts on my lungs was nowhere to be found. A few months later I had a similar experience with the flu. I truly believe that Trikafta saved my life.

• Pre: I never expected to live a full life. I mourned so many times the loss of growing old. I used to think about how hard CF was on my 20-30 year old body and wonder how a 60-70 year old body could survive the abuse (if I even made it that long) and it felt completely impossible. 
• POST: I fully plan to see retirement, my grandchildren (if Kaylee decided to be a mom), and to grow old just like everyone else. 

This is already long, but I feel like it is just the tip of the iceberg in how much my life has changed. I feel grateful every. single. day!! I was given my entire life back and there are no words in the english language to even describe the joy Trikafta has given me!