03 March 2009

Wasting Time

With everything going on, I have quite a few decisions to make regarding my own personal health care, work, prioritization of things. And in my head, it seems like it should all fall within a nice comfortable time line. Imagine GIANT GANT chart in my head with things like doctors appointments, work appointments, chores, SLEEP, NAPS, FOOD, etc.

Time lines and plans make me happy. I really like these things. I am not always great at following them, but they give me comfort. This week has been a little uncomfortable as I am realizing I can not plan for the unknown. I have no idea really as to the actual START date of my treatment, for instance when do I need to take days off work, how many days, etc. What will the drug do to me? Then there is dealing with my crazy hands which keep acting up. I was hoping that they would stop swelling, but every day it ends the same, with giant pincer claws as hands.

But today, I had a doctor's appointment. It was in the "schedule". But Quest did not get the lab work transferred to the doctor in time and fax machines were not working, and I ended up getting a bit of knitting done at the doctor's office while I waited. But now I need to schedule another appointment to make up for this one. Oh well!

Later today I find out that the steroids are keeping some things at bay, but not everything. I really need the Rituxan treatments to start to see if they will work and keep the pincers at bay.
Great news = all is approved by the health insurance, the powers that be!
But the Rituxan should work for the RA, not necessarily all of the other pieces. I am a little concerned. But there is a worry about over exposing my body to too many drugs at once.

So as you can see, the time lines in my head are constantly changing. I am not sure how all these pieces will fit in. I do know that I will just have to make time. It will all work out in the end :D

1 comment:

  1. I know what you mean about the appeal of charts and plans and the frustration of the unknown.