So tomorrow it will be one month since I started the miracle drug. I have learned a lot of things about myself in those 4 weeks. I have also made some revelations. The drug is a miracle but my CF is not gone, not gone at all.
OK so what have I learned:
I learned that all the work I have been putting in with my treatment compliance, exercise program, proper sleep routines, and hope in my heart pre-trikafta, had prepared me for this change. I am proud of myself. I also learned that I hold a lot of hate for all the above mentioned. I have hated it all because I have never had a choice in the matter. I had to do it because the consequences of not doing it would be catastrophic. So having no choice made me angry. Now I am still doing the exact life plan as mentioned above but guess what? I’m not angry, I’m grateful, I’m excited, I’m okay with doing it all still. I did not expect this drug to cure me, far from it. I have too much fixed disease in my body and NOT doing treatments will not serve me well. So I have put the thought of getting rid of some of my treatments off of my wish list. I am ok with that. Now when I do my treatments I see results in how I feel and that makes all the difference. So that being said I have also learned that my CF will still affect me and I will probably need a lung transplant at some point. So because of this realization I am not taking every good day for granted. Life is hard but it’s beautiful too. I feel like I am in a type of remission.
Onto the revelations I have made. I am no longer comparing my results to those of others. I shouldn’t be jealous of another CFer having a huge bump in their lung function or that they can now skip treatments. As my doc said, “ we all won the lottery, some won $5 million and others $10 million but we are all still millionaires”. that put this in perspective for me. I have also realized that there is a trade off with taking this drug. My diabetes is out of control right now, my vision took a hit and my eyes and mouth are excessively dry. My new contacts have somewhat fixed my vision issues but the dry eye makes it difficult to wear the contacts. I have also realized that I am old and some of the things that come with old age are compounding some of the side effects. I have also realized that these side effects can go on for months or years. IT’S NOT A CURE. For those who are mildly affected by CF it is a cure but for those of us, who have struggled for every day during decades of not so great treatments and some new ones that worked for awhile and then didn’t, it’s been a huge challenge. I’ve been climbing Mt. Everest for decades and haven’t even made it to base camp. That dream dies for me. It’s ok I will adapt. I always do.
So one month ago tonight I wrote out my wishes for this drug, check it out here.
50 Years of Being Sick, Does it End Today?
So let’s review my wish list of things that have made my life better:
No mucous no coughing, well almost. As I mentioned above my CF is not gone and some days I have no mucous to deal with and others I do. The difference is that I can get that mucous out with an extra treatment, a workout or a row. So my workload remains the same but the results are better.
Yes, I have energy and it’s awesome. I have not gained weight and nor has my diabetes improved, just the opposite. I still need my oxygen for high intensity tasks and working out/rowing and I’m not quite ready to stop doing it at night. I know I could but why not treat my body some good ‘ol O2 while I sleep. I do not need it for the majority of my day. I am outside/inside doing all sorts of chores and its great. I still need to rest when I get going faster than the crap lungs can handle, but a quick break and I am recovered. My walks are joyful, my workouts are fun and my rowing is improving by the day. So Trikafta gets a big pat on the back for that. Like I said before, doing all these things not tethered to my leash feels like I won a gold medal. This drug has given me more freedom. Freedom that was slipping away only one month ago.
My pancreas, unfortunately, has not changed. I still need as many enzymes as before and my diabetes is out of whack. I also still need to feed. I will say that I have an appetite, which is very new to me. I have always hated the pressure to have to eat and now I am actually eating and not worrying about my caloric intake. I have NOT gained any weight and in fact I have lost a couple pounds. That’s not a deal breaker anymore, having to keep my weight up. My body isn’t eating itself anymore. Finally have I started living? yes and no. I have lived a certain way for my entire life so making this pivot will not come easy. I am comfortable in my bubble. I still don’t trust my body and COVID and the Flu can still kill me. So I’m not going to public indoor spaces. I have had some nice long face time visits with friends reaching out to see,for themselves, my transformation. They are shocked at the change in my voice, my face, and not needing oxygen just to hold a conversation. It’s like seeing the Mona Lisa for the first time, although when I saw it, I was super bummed it was so small. Actually I think for my family and friends its like seeing the most beautiful sun rise. A new beginning, a new light shining inside me. It’s pretty cool.
So my immediate future has me decorating inside and outside for Christmas, nesting, studying Spanish and making a shit ton of personalized Christmas gifts with my Cricut, while singing out loud to my extensive 80’s playlist. Not groundbreaking but lovely to me. I wish the world wasn’t in such a terrible state and I wish that the pandemic didn’t bring out the worst in so many. I hope that we get back to WE not ME again. Life is hard, it’s unfair and it can be really challenging, all the more reason to grab tight to the beautiful moments and drink it all in. It’s time to eat, drink and be merry today and always.
Thank you for reading this blog and taking this journey with me. I promise to give you the good, the bad and the ugly. I am an open book. As we head into the holiday season I really hope that you can see that the littles things really are the big things. What are you going to do with your one precious life?
N
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