I'm flaring. Badly. I'm in between treatments. The Simponi wore off sometime this week. We gave up on mtx after five years of litle help, and 85% hair loss. So now I had a birthday. I'm 35, and I want to grow my hair back.(Sometimes I wear extensions, and though I get compliments, I always feel strange with them in, like I have some big secret that is about to get exposed.)
Ok, so my next step was supposed to be AP. My hubby agreed, even my Rheum. agreed, BUT (and there is always a but), two of my other docs expressed disgust that I would try it. Hence, when I came to see the rheumy I asked her what was up.
This was HER experience with AP. It can be good. It can be good, and I may feel great on it. (So this is where my hubby and I are getting excited.) But then she said, "I did AP with 1 girl with Sclerdoma. She was actually flying to Calirfornia to get it done, and I was just monotoring. She felt fantastic...for one year. And then it stopped. No one could get it tweaked enough for it to work again."
She went onto tell me that, "The AP girl was ready to sell her story to the world, but then it stopped. She said we can try AP with me, but she doesn't think we are there yet. She wants to keep trying until we've hit all the biologic drugs so that I'm not crippled by the time I'm 40 - 45."
Why feeling good and becoming cripple should go hand and hand, we can't figure out.
In any case, she STRONGLY suggested that we move to Arava and Rituxan.
Fine. Let's go.
Except...my insurance company decided I need prior auth. for Arava. Why do they do that? They approve drugs that cost thousands in a blink, but every once in a while they will say nada to something dumb like a birth control pill.
And...the infusion nurse happens to be on vacay for this week. Which means, I don't even get to schedule the infusion until next week.
Meanwhile its been about 6 -7 weeks with no Simponi, and my body is SCREAMING at me. So yeah, you guessed it, I'm riding the steroid/pain med. train...which means I feel like 4% better.
Anyway, that's not very entertaining, but I wanted to catch everyone up on my new treatment option b/c we discussed it at lenghth on facebook.
However today, as I am flaring, I have been in bed quite a lot watching the House Marathon. They just showed my favorite one.
Its the one where House undergoes some memory brain surgery to figure out why Wilson's girlfriend is dying.
He ends up in a small coma at the same time Amber dies. So then they are both riding in this all white bus wearing all white gowns. Obviously, they have one way tickets to Heaven. Personally, I'd prefer to fly or maybe take a hot air balloon, but whatever...
So House asks Amber, "Are you dead?"
And she says, "Yes...but you're not yet. You need to get off the bus."
And he replies, "I can't"
She: Why not?
House: Because it doesn't hurt on the bus.
Right there. That's what does it to me.
That line says it all. Every time I hear it it rings with truth throughout my entire being. Because we all, whether we admit it or not, have that nagging thought in the back of our heads that there is only one way...ONE WAY...to make the pain stop.
But then...everything stops. Our joys, our goals, our connections to our families.
But the fact that we even have that nagging feeling is enough for people to recognize JUST HOW horrific it is to live with chronic pain.
SO FIX IT PEOPLE. We're not just complaining. We are losing most of our lives. We may be here breathing, but that's just not enough.