Worn out

I haven’t posted for a while because I wasn’t exactly sure what to say. After the last round of IVs I was pretty good for about a month. In early September, however, I started having trouble breathing again. We thought it might be due to seasonal allergies and played around with my prednisone dosage, which helped a little, but I was still fatigued and short of breath. It wasn’t TOO bad though, and my pulmonary function numbers didn’t drop much, so we kept bringing me in for appointments every 2-3 weeks and trying different things. New inhaler – no change. A week of IV hydration – no change. I was getting by, but the whole thing was pretty exhausting and demoralizing.

Last week my doctor noted continued congestion in my lower lobes, which is unusual for me. Since nothing else had worked and I still seemed to be in a low-level CF exacerbation, she suggested starting home IV antibiotics, which actually surprised me. It’s gotten difficult for me to figure out when I just have to put up with feeling kinda gross on a day-to-day basis, and when we should try more intensive treatment. I know when I’m REALLY sick, but deciphering  the low-level dysfunction week after week is trickier. Part of me was very frustrated to go on IVs again, particularly after not getting much relief from the last round, while another part was relieved that maybe I don’t have to live like this and can hopefully feel better.

Turns out I went to the doctor at exactly the right time, because that very night things took a turn for the worse. I started running a low-grade fever and developed a horrible hacking cough that kept me up all night. Cough drops, cough syrup, tea with honey, soup – nothing helped. After 4 days of this, the hacking cough transitioned into miserable chest congestion. At this point, I haven’t gotten a decent night’s sleep in a week, my throat is ragged, and I’ve had an off-and-on low-grade fever every day. It’s been pretty pathetic around here to be honest. I’m shambling around like a zombie, moaning and groaning, mainly communicating by grunting with different inflections. I’ve been too much of a mess to even write a health update about it until now. Send thoughts and prayers to poor Katherine, who has a front row seat to all the drama and misery. I keep telling her to just take me out back and shoot me, but for some reason she refuses. Something about, “You’re not Old Yeller,” bla bla bla. Whatever.

Thankfully, things are slowly improving, and I have hope that I might even manage to be a semi-functional human being again someday. Hopefully sooner than later.