"It is a truth universally acknowledged that when one part of your life starts going okay, another falls spectacularly to pieces"~Bridget Jones
I was just re-reading my most recent posts, which, sadly, can now be classified as "old" posts. I particularly enjoyed the one from early in May when I outlined just how psychotic my month of April had been, and how my health was slowly taking a turn for the worst.
I did go to that clinic appointment. I was told that there were "no breath sounds" in my lower right lobe. Fantastic. Took a little Cipro, tried to get as much rest as possible, which, much to the dismay of those around me, meant use of the word "no." I went back again in July. But we'll get to that in a moment.
In June, Rylie and I took our long-planned plane trip to NY to visit with my family. It was financially strained, physically draining, and much too short. But we had a fantastic time and wish we could have stayed longer. We got home from NY on 6/22 to a barrage of messages from family that said our father had been taken to the hospital for what they feared may have been a stroke. That was a Tuesday night. All day Wednesday, I did laundry, paid bills, ran errands, and so forth. Rylie and I literally emptied our luggage, washed the items, and then re-packed them. We left for my parents' house at the beach on Thursday.
We spent a little over a week there, including the date of my follow-up clinic visit. At this visit, my pft had improved ever so slightly, and there were very faint crackles present in my lower right lobe. This seemed promising to me, as some sounds--even bad sounds--are better than no sounds at all. I'd rather think that my lung is mucked up and waiting for proper clearance than think that it's been reduced to a paperweight.
We got home with mere days to spare before Garrett and I were expected to run our church's vacation bible school program for 4 nights. By the time it was over, I was pooped! Rylie and I spend the next week and half playing catch-up on all the things we hadn't done around the house (would've done more swimming, but Rylie ended up sick for a week with a terrible ear infection.) And then the last week of July, we headed back to the beach once again to stay with parents and to babysit my nephew's daughter while my sister was out of town.
During this time frame I started taking the newly FDA approved drug, Cayston. I was about two weeks or so into the treatments when I woke up with severe upper right side chest pains while at my mom's. I ended up spending an entire day in Waccamaw emergency department (an experience I wouldn't recommend, but it's slim pickens at the beach). In the end, after an ekg, and x-ray, a chest ct, being parked in the hallway in a gown on a gourney in front of a room where a man was coughing up chunks of blood, I was told that they "think the scans look how they would if I had pneumonia." They "THINK"??? This is also a doctor who never even listened to my chest. This is a hospital where the triage nurse, even after being told that I had CF and chest pains and trouble breathing, made me wait an hour before being triaged. This is the hospital that never asked what meds I'm on other than those I'm allergic to. They never took a complete history. This is the place where the charge nurse says to me, "So, you have cystic fibrosis? How did you catch that?" So, why should I have been surprised that the doctor who "thinks" its pneumonia decided not to prescribe me any antibiotics?
It's not worth fretting over. Sure, it's a day out of my life I'll never get back. Sure, I'm probably carrying some strain of TB or God knows what else from my hours in the hallway. And yeah, it will probably take 10 years to pay for the visit since I have no insurance other than Medicare. But, the timing was bad. I was up to my eyeballs in parental drama and didn't have time to properly be sick or get diagnosed.
We were at the beach for a day or so more than a week. I cried a bit on the drive home. I've cried a number of times since being home. In the last few weeks, I think I've come closer than I have in years to having a breakdown. And the sad part is, most of what saddens me are things so far outside of my control that what's the point?
So, for now, I've been hibernating at home in our bubble. Partly from necessity since it's been 100 degrees in the south for some time now and going outside nearly kills me. But, I've been catching up on my rest, catching up on some reading. I auditioned for another play, The Busy World is Hushed, and got the part. So, now things will get busy again since I'll have rehearsals practically every night between now and September 12. Rylie starts back to school in less than 2 weeks, so that will also change things around here. I've fallen off the wagon where my medicines are concerned, but am working on getting back into routine again now that I'm home.
I go back to the clinic again at the end of August. Hopefully, it will be a good visit and I haven't screwed myself up too much this summer. I feel like the last two months have just been a giant blur. Physical exhaustion...emotional exhaustion...I'm due for a rebound!
It's time to try defying gravity!
