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Not a lot to report but good news
Below is my recorded blog on how my day has gone since taking my first dose of the new Cystic Fibrosis drug, Trikafta
First morning dose of Trikafta down. I will take notes all day of everything that happens and record a blog this evening.
And so this journey begins.
My update from this morning about Day 4 of homecare IV meds, Life and more
Happy Friday, I normally would be dropping a new blog right now. But today I have been coughing so much I pulled a muscle. So I’m laid up in bed thriving in pain. Send help and cough syrup!!! Possibly snacks too if I could sit up long enough to enjoy them! Ugh! But, this is our reality as chronically ill people. We never know what the day will bring. I had all kinds of plans when I got home at 5pm today. Finish recording my blog and finish up med organization during it. Then can some more things out of my garden. That idea went over as well as baptizing a cat! So here I am telling you that I will be late again. Consistency is one thing all Cystic Fibrosis patients strive for and sometimes we nail it. Other times we slam a wall at 100mph (figuratively speaking). Happy Friday and I hope you have a great weekend. New blog coming soon I promise.
Guess who was supposed to get this excerpt dropped last night? Raises hand Unfortunately I do not have a legitimate reason this time, only that time simply slipped away from me. It happens I’m only human, and consistency is a huge goal. The only thing I’m consistent at right now is being a mom and wife. I can’t say it’s because of laziness. I can say it’s because I am a busy working mom/wife with a chronic illness and life happens. And sometimes it’s because of spontaneous decisions to enjoy some fun with friends. I’d rather have that excuse any day of the week over laziness or a hospital stay.
Anyway, this week we are gonna talk about medication organization. I wanted to drop a small taste about why it’s important, how to become more consistent with it and I’ll be doing this blog with a video. It’s very easy for an adult CF patients meds to get in total disarray for many reasons. Especially if we are busy or not feeling good. At some point all of us have gone through a non compliance phase and when you are busy like myself it’s easy to forget something once or twice a week. Nobody and I mean nobody is 100% compliant 365 days a year. I will address this in another blog. Because of this, over time we develop a stockpile which adds to the mountain of supplies we already have. It’s important for our own sanity, the sanity of the people we live with and to keep track of our supplies to keep things as organized as possible. Right now once a month I seriously revamp my medication, go through everything and rotate based on expiration. I will show you all of this in my vlog. I will also have tips to keep it as organized as humanly possible in between. I’m finding right before refills are due is working for me.
Catch me Friday, the 23rd when we dig deeper into this topic.