I haven't posted in a long while, mostly because I've been kind of on the grumpy side. But I'm over it. I'm ok. When I last posted, I was in the blueberry season, finishing up a month of IV's and getting ready for vacation in FLA. We left on Aug. 6 and were to fly back the 22nd. I felt great...a little on the invincible side actually...the IV's were out, PFTs were up and I was going to have a great time! Well, the first week did go great. My kids were there (not in the same place tho), but we were all together a lot and had a nice time. The second week was going to be just us two and yeah, I got sick. I couldn't believe it, my chest felt terrible, I was achy and tired. I finally did call the cf center and they called in a prednisone burst (yuck) and made an appointment for the day after we got back. So we flew home the 22nd (got home late) and we went to clinic the next morning. And they said I need to do home IV's again. My pfts had dropped quite a bit in just a short time and lungs sounded not so good, so they decided to be aggressive. I was not happy...It had only been barely two weeks from the time I got off them till I got sick again. And pseudomonas were back playing havoc with my lungs. So we waited and they were able to put in my picc line at the hospital that day and I'm just starting my 4th week again on levaquin and ceftazadime. I'm on oral doxy and bactrim for steno maltiphilia for two more months, azithromycin daily all the time. I have weekly appointments when I'm on IV's...yesterday was one of them. My pfts have gone up from 3 weeks ago, but yesterday were down a couple of points and I was really wheezy. It was decided to do the IV's for another week along with another prednisone burst for 5 days and a predisone nebulized med. After I'm off IV's, they are planning to put me on Cayston, a pretty new nebulized med. I guess I've learned that with this disease, you can work hard to be compliant with all the treatments and you do everything you're supposed to, you really have no control. You can be feeling really great one day and crappy the next. As soon as you think you are steady and things are under control, it can change. You might even have someone say you "look good" or you "sound good" when you're actually feeling yucky. It's just weird how it works. I've just had an extra rough time since January and I just can hope and pray it doesn't stay like this...I'm working to get my lung function back to my baseline...which sometimes happens after I'm done with IVs. One bit of really good news is that my creatinine level has been back in the normal range, which was awesome to hear! I've learned to make the most of each day and it truly is a gift. I'm prioritizing what I can get done...which is sometimes not very much! I'm enjoying my family, I'm resting, I'm slowing down. I have lots of hope but I also continue processing reality. Most of all, I'm trusting God, who is really the one in control when I feel out of control! And that's the bottom line for me.
Kung Pao Grilled Cauliflower Taco
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