No Growth for the Weak

So its been a long time since a hospitalization has even been considered for me.



My last one was such an oddly good time, I thought I would be changed forever. Never again would I cry or fuss about having to go in for two weeks or more even. I'm an adult after all.



WRONG. I finally got close enough to taste it and I panicked. Practically begged the doc for orals, cried and got angry, etc etc. Sure, a lot has gone on in our hospital this year. I lost 2 friends mysteriously to cepacia about a year ago after both being admitted at the same time. 3 more also contracted it at the same time (not friends, but 5 at once, really?) and to my best knowledge, died as well. I've got the added burden of leaving my new husband for the first time and being alone there. And then there's the fear.



I spend so much of my days reading the blogs of fellow Cf'ers, following them on facebook, chatting with them through every means. Craving learning. Craving a comfort-level with the "inevitable". I wanna be ready for transplant when it comes, because I know it comes fast. I hear you can't be ready. I hear when you're sick enough to need it, it transforms from scary to exciting. Problem is, I'm still stuck back at the other babysteps. I've never had a picc line, haven't experienced NG tubes, ABG's, Ports, etc. I feel too new at this, but I know CF doesn't care how ready I am.



So it comes down to this, I've gotta get admitted when I can't dig myself out of whatever is causing my lower-than-baseline lung function, and I've gotta be strong. I just wish I was fighting for something better than scraping along the cusp of transplant. It's so unrewarding. Up and down ever so slightly, but with the difference meaning the world to my functionality. It feels desperate and messy, and I don't have the extra lung space to make mistakes with my treatment.

I also feel more than ever like theres no clear "right" thing to do. My white cell count is fine, my oxygen status great (for me), and yet my symptoms and pfts say otherwise right now. The docs seem to take my lead 99% of the way. I fully knew at clinic that depending on how I said my piece, I would either be put in, or given orals, without having to use either of those words. I hate that. I hate being in control when it comes to my survival. I want them to know exactly what I need and to give it to me and guarantee success. Being childish gets me nowhere, but here I am.

Finally, when I am scared, and not willing to "try" an admission right now for fear of the million things above, not to mention the possibility that it DOESNT work... I strain my family. My husband and Mom sat at clinic emotionally torn watching me act childish about something so many Cf'ers can just suck it up and do. A fellow blogger's post reminded me this week how our support systems (especially spouses) CHOSE to deal with CF and what it does to their loved ones. Not only could they lose us, but they watch us suffer physically and emotionally and yet are still there/here. That must take so much more courage than just doing what is needed to survive.

I have alot of growing up to do.