That’s really all I have to say. I’m alternating between establishing lofty goals (“I’m going to start lifting again.” “I’m going to go get my wisdom teeth taken care of”) and crashing back to reality (“we no longer have a date for transplant, but that doesn’t magically give me more time and energy!” “Holy crap, what’s wrong with this kid’s liver?”).
CVS Pharmacy (our specialty pharmacy, where we get our injectibles) has been giving me hassle – they STILL don’t have his Medicare information in his file. I gave it to them a sixth time. Following up with a letter with a photocopy of the card. This has been going on since January. I mean, I guess if they don’t ever want to get paid, then fine.
And in the spirit of kicking me when I’m down, some psychotic people from my past have reared their ugly heads. Typically, their antics probably wouldn’t bother me, as I generally see them as sad indicators of undiagnosed mental illness and I feel sorry for them – and do genuinely hope they will some day get the help they need, but their sense of timing was superb, and I let them get under my skin, so I’m dealing with the fallout from that, too – mostly just making me feel crappier about myself than I already do.
Teddy’s appointments in Iowa City got scheduled for FRIDAY of next week, so we have a long week of waiting ahead of us. I’ve decided to keep my business closed and focus on finishing 3rd grade math with my 3rd grader in the mornings and doing fun things with all three kids in the afternoons – since I don’t have to worry about anyone getting sick any more, it’s somewhat freeing.
Meanwhile, I wait and worry that some other unnamed threat lurks in my kid’s body, waiting to compete with the kidney disease to see which one will kill him first. And the world somehow keeps turning.