Five Days Later

It's been kind of a difficult week, on and off IVs. That's right, I did say off IVs. I stopped them on Friday, after I started running fevers over 103 degrees from the Zosyn. So far I haven't been able to start them up again, which is frustrating. That means that since I lost Wednesday from waiting at the hospital, I've actually only had one full day of IV treatment, despite having missed 3 days of work and a whole weekend's worth of social life. I hate to sound grumpy, and honestly I don't feel horrible, but my O2 sats are still around 88-91 while awake without oxygen, which isn't too great. And I'm still coughy and exhausted. I don't really know what to do because I was really planning on and hoping to go back to work tomorrow, and now I have to reevaluate whether that's honestly possible. I thought I would have been on a full 5 days of IVs by now, and that would mean that I would feel rested and pretty healthy. Instead I feel kind of run down and frustrated.

Most cystics could probably write a novel about healthcare frustrations. Hospital stays (or lack thereof in some cases), drug reactions, homecare companies, insurance issues . . . you name it, and I'll bet there's a cystic out there with a story you wouldn't believe. In the grand scheme of things, a couple of days of missed IVs and a botched hospital admission probably don't rank too high on most people's list. Hell, they don't even rank that high on MY list, to be honest. It's really more of an inconvenience than anything.

But on the other hand, after how much many of us fight to stay healthy, "giving in" and admitting we need extra help (from hospitals, IVs, employers, and caretakers) is never easy. To
screw up your courage, bite the bullet, ask for the time off, face the questions and the worry, accept the offer of extra help from a friend or family member, pack your bag for the hospital, and then have it all go to pot right when you feel too weak and miserable to really take control of the situation . . . well, it sucks. Maybe some of the fault lies in the healthcare system or with the hospital administration, but in my case this time a lot of it was just bad luck and the joys of getting older with a progressive disease. I know I'm not the first CFer to develop an allergy to a drug that used to work great for her, I guess I can't be too angry about it, but right now it's still frustrating.

So there's my rant for this evening. On a more positive note, I finally received my new drugs today (still on tobra, replacing the zosyn with merrem). Hopefully within the next couple of days things will pick up dramatically, and here's to no more setbacks.