Friday, May 12, 2017
CF Awareness Month Day 12 - Cracking Point
*Warning: I fully acknowledge the following post is depressing. This one is not at all inspiring, but I guess it is a good glimpse into the lower points of dealing with progressive CF. Plus it makes me feel better to word vomit sometimes. 😏
I'm not completely sure what this post is supposed to be about, but I'm guessing it has something to do with reaching a point with managing this disease that basically "breaks" you.
Dealing with chronic illness is never easy, whether you are the patient or the care-giver. It's even harder when it's a progressive illness and you're repeatedly reaching new markers that signify things are getting worse.
I thought I'd reached "cracking point" in the past, and I guess for those particular points in time I really had. Tearful breakdowns, fears, and frustrations that I felt bad and life was hard. Never-ending treatments, for as long as I could see into my future, with no guarantee they would actually keep me healthy. I feel like those were nothing compared to the progressive "cracking points" I've had in the last 6 months or so, though. Honestly, this past year has been exceedingly difficult; I feel like I reach one justifiable cracking point, pull myself up again, then a few weeks/months later reach a new, lower cracking point, and the cycle continues over and over again, always leaving me a little lower and little weaker than I was before.
First it was sorta kinda trying to get pregnant and failing repeatedly while all around me friends were popping out babies and positive pregnancy tests like it was the easiest, most natural thing in the world. Pregnancy was not happening for us, though, mostly due to some hormone issues I recognized, but also because I kept getting overworked and sick and put on IV antibiotics. That was the start of the downfall to the most recent "cracking points." Then came the surprise pneumothorax, which was extremely stressful and painful, and for a while we weren't sure if it was going to fix itself. Again, I'll provide more information about this event in another post, but through my haze of morphine memories, I remember one afternoon everything coming to a head and bawling my eyes out to my nurse and nurse practitioner because I just "couldn't see a silver lining here" and that it felt like it was never going to get better, to which my sweet nurse at the time randomly burst out into a worship song to help soothe my fears. That was a cracking point, but eventually the lung did heal up and I did go home. Then I went back to work and caught a cold a month later, which sent me back onto IVs and the true realization I really just couldn't keep working anymore and I would have to quit my job because of what CF had done and was doing to my body. I wept, I got angry, I turned bitter in some moments. Turning in my resignation to a job I wanted to stay at but knew I couldn't because of how low I'd been knocked with my health was a cracking point. But I pulled myself up by the bootstraps again, and tried to find the bright side. Yes, I was leaving a career I loved, but now I would have time to enjoy being at home, get as healthy as can be, and hopefully figure out and truly pursue this "starting a family" thing.
And then two months later came another cold. And another hospital admission. And talk of getting a port because they couldn't get a PICC in this time. And PFT numbers that seem to have plateaued at the lowest and scariest place they've ever been, and a flare-up that doesn't seem to be responding to end-of-the-line antibiotics or high doses of steroids, and the feeling that if this is as good as it gets, I really have nothing more to look forward to or work toward in the coming years except waiting to get sick enough to need a lung transplant. And feeling negative and bitter anytime someone tries to say something like "you make me proud" or "you're inspiring", or they try to cheer me up by sending me a picture of their cute baby. And the realization that I am terrible at this progressive-illness thing and wishing I had way more grace about accepting things as they are, but I don't.
And that's where I find myself since yesterday afternoon when those PFTs hadn't budged a bit and I was still coughing up all kinds of junk after over 10 days in the hospital and on lots of medicines, and what feels like all my remaining hopes and dreams being kicked to the side, and worst fears beginning to come true - the lowest cracking point ever. I continue to try to grasp onto joy and hope, but those seem to be in short supply today.
So, there you have it. My most recent "cracking point." They happen to us all. The important thing is finding a way to build back up again, even with new cracks.