Trying to Plan Ahead is Exhausting

I am frustrated!! Those of you who read my blog and keep up with the personal ups and downs I experience may recall that I'm to try Rituxan to treat my RA. The neurologist gave the thumbs-up some weeks ago so my rheumatologist said it was "a go!" The only consideration I needed to make in regards to my MS was to be off of Copaxone for 2 weeks before hand.

When I received that news I stopped injecting daily so I've been MS-drug free for almost 3 weeks now as of Friday. Then there were several questions which needed to be answered before the infusions could be scheduled.

Does my insurance company require pre-authorization for Rituxan infusions? No
Does my insurance prefer one hospital over another? No.
Inform rheumatologist of insurance requirements. Done.
Inform rheumatologist which hospital I have chosen to have infusions. Done.
Have rheumatologist fax orders to hospital. Done. (more on this below)

Is there financial assistance available? Yes.
How do I apply for said assistance? I called and received packet in mail.
Is my rheumatologist already in said program? No.
Is my hospital signed-up in said program yet? No.

How much will $4000 copay assistance cover? Must know price of drug first.
Call insurance company to determine negotiated rate of drug. They need code #.
Call financial assistance program to get code #.
Call insurance company again with code # to get price.
Fingers crossed that the correct info was given and $4000 will cover my 10% responsibility for the drug portion alone for one year.
I will still have to pay infusion-related costs without assistance.

Allow time for my rheumatologist to complete paperwork (still within 2 week Copax-free zone so all is okay).
Call hospital to schedule Rituxan infusions. They haven't received orders?
What?! Told to call my doctor and then call infusion center again.

Complete medical information release form which was in packet I received for copay assistance program.
Take form to rheumatologist office to have them fax it to program.
Have them call to enroll their office, too.
Call to activate copay 'credit' card. Notice that immediately available credit is $2000. If more help is needed, it may require submission of financial need forms.
Worry about this later.

Inform rheumatologist that hospital says they don't have orders.
My doctor faxes orders again and calls me personally later in day.
(Note she has called me personally at least 3 times during this entire process.)
Call hospital to schedule infusions, hoping to get this started tomorrow or Friday.
No can do. All booked. Must wait until next week.

But infusion next Thursday means follow-up infusion on Thanksgiving when the infusion center is closed. Oh, and Rob and I were thinking of escaping out of town that week. And next Saturday is our fall "piano kids-only class day" here in my studio, an event which is always exhausting because it involves groups of kids and parents who are hosted in the upstairs area of the house which requires cleaning the house first.

This isn't a good schedule. I had planned to get it done this week and the week BEFORE Thanksgiving to enjoy having it out of the way. So I talk to Rob who validates my anger and frustration and helps me to come to terms with putting this off yet another week.

So now I'm scheduled to have Rituxan infusions on Nov 19 and Dec 3. We will be free to go away the week of Thanksgiving as Rob's taken the week off. I don't need to worry about being worn down while trying to clean the house (note to self: please consider hiring someone to help this time around).

But I'm still frustrated that they didn't have my orders (easily on hand) last week when I called and that now I will be 5-weeks off MS meds, with the worry that I'm living unprotected. Yes, I know. The fear is self-imposed and who knows if those nasty immune cells are having fun eating away at my myelin instead of the Copaxone particles.

Note to self: It'll all be okay. Breathe!!