The New Math

What to do, what to do? I added it all up and it seems that my life requires 120% of what I can humanly do. Yet, I added up how much I have to give and it only adds up to 95%, you see my problem? Let me explain in greater detail. I get to give myself an injection once every two weeks. My last dose was mid March. Knowing that I had one dose left, I called and scheduled to have the refill sent mid march, when I would use up my last dose. Somewhere in that time they called to confirm delivery and left a generic message on the machine, I meant to listen to it again, I just didn’t. Suddenly it was March 30, two days away from the next dose and I realize that the shipment never came, not good. Of course in that time the pre-authorization for the med ran out even with the refills available, they couldn’t ship without first getting the paper signed by the doctor. As it turns out, that person was out until Friday and there was no other person that could possibly fill out the paper. It was so frustrating to have forgotten this, how could this happen? I need this to literally keep from bleeding internally. As mad as I was at Cigna for not shipping it or calling more to verify the shipment, I was so mad at myself, for not thinking about this Monday, or a week earlier. But I had, I had thought of it, just never at a time that I could pick up the phone, sit on hold forever and have a conversation without Chloe shouting ELMO over and over throughout the whole thing. By Friday afternoon I was exhausted from fighting with these people and had given up. I had also had the pleasure of calling on the table mount for Claire’s talker that we can only use at home. The vendor said they faxed it, Cigna said they didn’t get it, I call and all of the sudden things move. Then there is the wheelchair we are working on, same story. Needless to say, I had done a lot. I hadn’t just curled up in the corner and cried through the whole week (which would have been completely understandable), I had kept Chloe from needing a trip to the ER(nothing wrong with her, daily she does things and I am surprised she is not more hurt than she is), Claire only had regularly scheduled doctor stuff, I had enjoyed the park with Chloe and tried to take a little down time for myself. Saturday came and it was the day of the sleep study that I wasn’t super excited about, it would be our 7th trip to a hospital in a 6 week period. We got all ready, loaded Tangled on the iPad and headed to LPCH, where they didn’t have our chart. I had said to Jared as we were getting ready that it was weird there was no call to verify the appointment, because it didn’t exist. So I go to check in they don’t have a binder with Claire’s name. We wait in the art room while they look into it and try to fit us in. It was then that I lost it. I knew the lady said she would email me and I never got the email, but it was just directions, which I didn’t need. Was I supposed to confirm? Did I miss a form to sign? On the heels of the previous weeks frustrations with order drugs and equipment the weight of rett syndrome came crashing down on me.  It is too much. I suppose I could not sleep, I could not slow down enough to feel and have emotion, if I didn’t take the time to feel I could get so much more done! But I have decided that I don’t want to go through this numb, I don’t want to miss the little bits of joy that are mingled amongst all the chaos. Today I called to reschedule and find out where it had gone wrong. Turns out the only problem is in my head. Everything is all set for Sat. April 9th, apparently I am using the same math to count days as I do things on my to do list and it just doesn’t add up.

One thought on “The New Math

  1. Yep, my list is so long that I need to make a list to look at my list. Ugh. I hope you got the medicine thing worked out and hang in there!

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