Wednesday, September 17, 2008

Less frustration and restrained elation

Okay, school was slightly less frustrating today because someone discovered that maybe "some" of what we were doing didn't make sense in ELA. Which means that tomorrow morning during our planning period we get to have another meeting to talk about why it doesn't work. Then we can all go back to our classrooms afterward, frustrated yet again because we don't have the answer but thanks for using up 42 minutes of my work time, which I desperately need to use to correct papers and do my actual job.

By the way, no other grade levels in the whole building have to have this meeting. Just my grade. Everyone else can actually use their planning time to work.

Oh, and it's Open House night which means not only do I get to work, have less time to do my actual job while feeling bitter and frustrated more than normal, but I also get to come in and work from 6-8 p.m. I arrive at work about 6:45 a.m. so this presents itself as a rather long day, regardless of MS.

I know Open House is important but couldn't it be shorter?

Or couldn't it be later in the year instead of rightnow (yes, I meant to type those words together!) when we still can't get our act together in the fifth-grade department? I swear there have not been more than three days consecutively where we actually followed a real schedule, uninterrupted with new changes.

Everyone at the grade level is frustrated and I know that tomorrow's meeting will continue that frustration. Don't people know that they need to trouble shoot this kind of stuff before school is actually in session?

Big sigh...

On to the good stuff now.

I met the new P.A. who reminds me of my brother because they have both have had cleft lip repair done. (There is a slight scar if you know what you're looking at.) That has now made my mind think of this man as M. instead of J., which he rightly is according to his name tag. He's got an unusual sense of humor but he listened and showed me my MRI spots and we talked about how my O-bands were ridiculously high (like 1,000) and how he's surprised there aren't more lesions. (Yes, that was a run-on sentence, so sue me. I'm not worth much.)

We talked about the failure of Copaxone and how I honestly gave it a "good" try of almost 2 years. Then we talked about how Rebif hasn't worked for me and how I would like to head to Tysabri Land.

He hemmed, he hawed (hee haw, I'm flipping hysterical, huh?) and we looked some more at the MRIs and talked some more.

And then the moment arrived when he acquiesced and said, "Yes, you may have the liquid gold."

I'm getting Tysabri, yippee! I had my blood work done today to check for the JC virus and to see my current liver numbers. I've been off Rebif for more than a month so all I need now is the infusion center guy and the insurance people to get everything all ironed out.

I just need to sit back and wait for the call about an appointment and costs. This is a relief for me as this neuro's office has an excellent reputation, they are open five days a week, and there is a whole process for how the doctor gets the messages from patients electronically on his computer and he calls them himself after office hours. The doctor actually said that he will not allow any lax office people and that customer service is important to him.

This might be some sort of neurology-Utopia here.

That's great but I still wish we didn't have the damn meeting tomorrow.


SwampAngel65 said...

YAY!!! I'm so happy for you!!!!! Let us know when you're scheduled so I can keep my fingers crossed and say a prayer for ya!

Denver Refashionista said...

School BS. When does it end?

Glad your getting the Tysabri and found a good neuro.

Lanette said...

That does sound like a Neurology Utopia! Good Luck!

Can I ask why Rebif did not work for you? I am starting it soon, with in the next week for increasing spinal MS.