TUESDAY...TUESDAY...TUESDAY...

Hi Friends,

I have successfully survived my first full day without Bill. He left for his business trip to Washington yesterday afternoon. Last night I fell asleep in Isaac's bed with him, and I woke up squeezed into Isaac's twin size bed with him -- almost falling out, and not very comfortable! It was after midnight, so I moved downstairs to my own bed. And I slept until 6:45 when I awoke with a horrible headache, and sadly realized that without Bill here -- it was up to me to deliver Cam to school. We set off for his school at 7:15 -- both of us complaining! I delivered him safely -- but my head was killing me and I was so sleepy. So, I came home and went back to bed, since all of the homeschoolers were still asleep.

At 10 a.m. we got up and started to be functioning human-beings. We ate, did our personal hygeine and chores, and homeschooled ... we were done by 2:30 p.m. just in time for me to get ready for my doctor's appointment with Dr. Lin in Thousand Oaks. I left for that by 3:15 as my appointment was at 3:45. Annie nicely volunteered to come and pick up Cam from school today, and then hang out with the kids while I went to the appointment. What would I do without Alice who came, as always, with Big Gulps in hand?

My appointment with Dr. Lin went well. More prescriptions for Fentanyl and Dilaudid. I also will be trying out a new drug called Nucynta -- which could hopefully replace the Dilaudid at some point. It's less strong, less addictive, and easier to wean off of. So, hopefully -- I'll have some luck with it kicking my headache. If not, Dr. Lin wants to do some injections into my head for pain control next month. Sounds fun, doesn't it? Apparently the pain is centered on my occipital nerve, which is not handling the CNS Lupus well. So, some injections there may make a world of difference. And while injections to your head don't sound all that fun -- if it gets rid of the pain, I'm in. Meanwhile, I'm still waiting for word from Dr. Cohen on my bloodwork and whether or not I can go up on the CellCept. Going down on the Prednisone is still not going well -- I'm stuck at 20 mg. If I go lower, the pleurisy and major headaches come back! And my PICC line is growing infected -- which is not a good thing. So, prayers for that would be appreciated. Anyway, I guess I'm still a big mess -- but really things are going as well as could be expected in my "loopy world." That's where I practice my "new normal!"

So, after the doctor's appointment, I stopped at the pharmacy to pick up all my meds from Dr. Lin. Then I drove home and met up with Annie and the kids. Molly was at Amber's house, Cam was watching TV, and the two boys were running amuck -- much energy and nowhere to put it:-o So, even though it was very cold and windy -- I took them over to the fountain park and walked while they played themselves silly:-) That helped a lot.

This evening Annie treated us to dinner at McDonald's. Thank you, Annie, it was a nice time, and that way we didn't have to cook either! And yes, we made it through a whole dinner without Isaac throwing up!! Hurray!!!

After returning home from dinner, there was a little bit of free time for the kids before baths/showers/ and bedtime. Right now, they're all off in bed, and it's very quiet -- heavenly quiet. In fact, the only things I hear are me and Annie typing on our computers, and the sound of my pounding head (--that part's not so nice!). I guess, that injection to my head is starting to sound better by the second:-)

God Bless Annie (or Alice) who has agreed to stay for a few days to help us out. Tomorrow is late day for Cameron, and she is going to drive him to school. That will be safer for all of us as well as all the Oxnard drivers on the road:-) And I'm glad to just have additional adult support, as well as someone here who can take care of me if the need arises!

Alright -- enough for now. I'll blog again tomorrow...
Much Love,
Michele