I recently received some well-intentioned feedback on one of my posts that I did not take well. My delay in writing is because I’ve had a hard time getting jumpstarted again.
Dealing with CF is hard. Dealing with the reality of transplant and the possibility of Joey’s life ending is harder. He is a wonderful, positive, outgoing, amazing person. He is the toughest guy I know and is my rock. I can’t imagine my life without him.
Although I am an outgoing person, I am also extremely private with the personal details of my life. This makes the whole blogging thing difficult for me. I do it because I know that people care and want to know what is going on with us.
I am honest in my posts with what I am thinking and feeling. People tell me that they can tell how good or bad things are going based on the tone of my posts, so I do my best to speak how I would as if a close friend were in the room with me. That said, I also like to pretend that no one is reading them because that makes airing the extremely personal details of our lives a lot easier for me. On the flip side, we really enjoy the cynical comments that make us giggle and the love we receive through the mail and internet. It helps to ease the sting of what is happening to us. And there is a lot of sting. Again, and again, and again.
Both Joey and I rely to a large degree on our sense of humor to carry us through the tough times. Our intent with the posts is never to offend or upset anybody. That said, I believe that censoring myself too much makes my posts disingenuous and less candid, which for me kind of defeats the purpose of doing this. Hopefully that makes sense and nobody takes offense. It pretty much comes back to the rules and regulations we laid out on this site when we announced our wedding. (Yes, in true golfer fashion, we had rules and regulations that were laid out prior to our wedding; same goes with the blog).
Moving on. Joey was doing much better yesterday (i.e. breathing more and was more alert. I.e. Not falling asleep 2 sentences into a conversation). His pain drugs have been switched again, so that is likely the culprit for the change. Dosages are being tinkered with slowly so that there isn’t another breathing emergency. Unfortunately, he couldn’t wake up for another period of time this morning and they had to give him narcan again. This was especially scary since he had been totally coherent and speaking to me 10 minutes earlier. The only reason we tried to wake him up was because one of the doctors came in to talk to him. What would have happened if it went undetected? Now Joey is awake and coherent again, but is in a lot of pain. We are all rooting for both his safety and some real pain relief soon.
In donor news, Jackson begins phase 4 of his testing today. Hopefully we’ll be able to visit a bit while he is in town. Can’t wait to sit down with him for a nice glass of chianti.
K & J