Lots of good news to report! Check it out.
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
Supplies came FINALLY!! I will do a full update and info blog tomorrow about how everything is done. I wanted to do my dressing change video but it’s too late and I was over my initial 24hrs!!! It will need done in 7 days. So not this last time I was on homecare but the time before when we still lived in the city and I had my final fuck this moment, I taught David (my husband) how to do it when it needed fixed! I allow him to do it for numerous reasons:
- As stated above, my experience with home nurses and their inability to properly change and place a new dressing is beyond my patience level at this point in my life. Too many horror stories or needing to redo it immediately after because they don’t listen than I care to count.
- He has been tattooing for over 25yrs. He’s blood born pathogen certified and because of that he understands the IMPORTANCE of needing things to be and remain sterile.
- I haven’t found anything this man cannot do! Having had so my picc lines, I could do it myself if it truly came down to it. So I knew explaining things step by step through the entire process he could handle it and I trust him with my life.
I now have a fresh clean dressing and I can start my meds at 11pm. Yes I am still in pain but I am managing it, sorta. See everyone tomorrow morning for a full update. 💜
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.