Updates

1) My port is working beautifully and no more hand IV. I was right - it wasn't accessed correctly. After the TPA failed I started pitching a fit (politely, of course) b/c they were talking removal. The thing is, it was flushing but not giving a draw, so I knew it wasn't "clogged." I ended up suggesting they try again with a 19 gauge needle instead of 21 b/c I had a theory that the needle was too big for the access area on an arm port, which is smaller. Turns out I'm a little bit of a medical/engineering genius if I do say so myself. Who'd have thought?

2) Last night I asked for cough medicine and was presented with...codeine. Honestly. Codeine for a cough? But I was desperate so I took it. An hour later I was lying semi-comatose in bed watching Larry King interview a Scientologist about John Travolta's son. This led me to telephone my poor friend at 1 am to tell her the "hilarious" story about how Larry King had mistook the scientologist's use of the word "thetan" (meaning soul, more or less) for the word "satan" and had asked some question about why it was comforting to believe satan lives on after the body is dead. Obviously the fact that I found this so funny and woke my friend up to tell her about it, even while drugged, cancels out any claim I may have to call myself a genius from the port situation. Sheesh.

3) Today it finally happened: my doctor came in this morning and suggested I need to look into disability. Yikes. But actually I'm really proud of myself. I told her I was already considering a reduced schedule/flex time option and that I was working to come up with a plan I felt comfortable with before presenting the idea to my firm. I asked for her help in crafting said plan. And then I told her in no uncertain terms that I am 27, I love my job, and I am not going to stop working. Not yet, maybe not ever. I know my job doesn't define me, and I DON'T want to look back with regrets that I didn't do enough for my health. But at the same time I don't want to look back with regrets over my LIFE either. So I want a balance, a compromise, and if that means that neither my work nor my doctor is going to be 100% satisfied with my plan, then so be it. I trust and love my doctor, so I was able to ell her that calmly and with some degree of self-control (i.e., without bursting into tears). It actually went over well and she said she would support me in making a plan that I feel comfortable with even though her "official" recommendation is disability. I laughed and told her there was no way I could be a lawyer for less than the time it took me to get through law SCHOOL.

I knew we had made a total breakthrough when she looked at me and said "I do understand how much it means to you, and if you're saying that you understand that it might speed your road to transplant or infection but still feel it's worth it for your quality of life, then I am totally behind your decision." So great to hear those words, even though I do wish I could have avoided the conversation altogether. I guess no one wants to be told they need to slow down, but having a doctor willing to understand that health is not the only factor in life (and CF not the only factor in health, for that matter) makes such a difference. My family gets it too. I'm grateful and a little relieved, now that the dust has settled and I've had a good cry.

4) Hospital food is terrible. Enough said.

Hope everyone else is having a happy and healthy week. I had to cancel a drink date with friends tonight, so everyone have their favorite cocktail in my honor.