WHEN LIFE HANDS YOU LEMONS...

...errr, or more lemons than you expected.

Ok, but for real. I'm being ultra dramatic. I am fine, everything is fine. I am very blessed to be where I'm at in life....but I digress...

I told you guys I would be brutally honest with you so here it goes...last Tuesday was my first CF appointment since starting Trikafta in November. I gotta tell ya, I was ALLLLL up in my feels. I didn't want to get my hopes up too high because I am on such a small dose right now, but I also didn't want to discount how I was feeling and how amazing this med really is. I was trying to keep my head about things but also getting REAL excited to see the results and share in the excitement that all my other fellow CFers were experiencing (on full dose). So, I walked into clinic feeling all kinds of excitement, worry, and trying to keep my head on straight haha.

Jason and I kind of wanted to record my PFTs JUST IN CASE they were freaking AMAZEBALLS and because if they were, I didn't want to miss out in that first reaction if they were really great. THAT probably didn't help my overall anxiousness about them either....

So I go to do my PFTs....feeling like I'm going to throw up from all the anxiety/excitement...blew my first number (which is always the worst)....and it was 48% -_-  *cue the "umm, yeah maybe we shouldn't record them" and me already feeling defeated...

I blow my 2nd number (which is ALWAYS my best number) and it was 51%. Ok, not bad I guess. Blew my 3rd and I think it was 50%. OK......I blew a 4th to see if I could get it to 52% but that didn't happen - 51% again. My previous PFTs in October before Trikafta were 49%.

Y'all....to say I had the wind knocked out of my sails is a complete understatement! I had all these high hopes while also not trying to have these high hopes and I let it get the best of me. I was devastated honestly. Hey, I said I was dramatic, right? You were warned haha.

I also got the news that I would most likely have to continue my IVs til the end of March. Previously there was some hope that I would be able to finish them near the end of this month (January) because they had not detected the bacteria in my lungs for a while, BUT, turns out my last sputum culture just took EXTRA long to grow the nasty bacteria (called NTM) so that kind of threw all that out the window. It is getting to be SUCH a chore to mix my IV balls, remembering to do them 4 times a day, grabbing them on my way out of the house, etc. I was just DONE with these stupid balls and stupid IVs!!

So, mediocre PFTs on top of having to continue IVs for another TWO months really hit me hard. I tried to be happy with my numbers, as they were better than October's numbers. but dang was that hard. I was super deflated and sad the entire week. I was disappointed in myself, sad with my numbers, and just having a huge pity party. My CF friends and family kept reminding me that the numbers don't always add up with how you feel and that I just need to be patient til I can start full dose. Those sentiments went in one ear and out the other. I know they meant well but I was just not having it.

But guys....I woke up Monday morning, feeling so much lighter and ready to face these last 2 months of IVs and hit it hard. I've got this!! It's only TWO MORE MONTHS....I can hang on for that much longer and then my reward?

NO MORE FREAKING BALLS and FULL DOSE TRIKAFTA!!!

I'M SO FREAKING EXCITED!!!!

Until next time, KEEP ON KEEPING ON!