So we want back to see the specialist yesterday. The results of the bone scans show the RA has moved to my elbow, wrists, fingers, heel and shoulders. Deep down I knew this, because they bloody hurt, but when she said it, I felt two things.
Firstly I felt relief that I was not making it up, and then I felt scared of what it meant.
I don't know why I feel like a fraud. Maybe it's because when I mention the word arthritis people often say "Oh, I have that in my finger.." and I hear the unspoken implication at the end of their sentence
"But I just bloody get on with it."
Maybe it's because the markers in my bloods have never been very high. Even though my feet are two sizes bigger due to swelling, and my elbow looks like a tangerine.
Even though it's on the scans as plain as day. My skeleton lit up like a Christmas tree.
I feel that without high ESR and CRP levels, that I am making a fuss over nothing.
I don't think I am a wimp. I gave birth to 9lb without so much as a sip of water. I know what pain is, and my feet flipping hurt.
But they don't hurt as much as they used to.
So when the specialist was talking about moving me onto Anti TNF drugs and doing so ASAP I felt I needed to confess to her.
"But the pain is not as bad."
She explained that after a while people become used to chronic pain and the compromises that come with it.
My husband agreed with her. "You have become accustomed to not being able to do things, to being sore. To shuffling in slippers or walking with a stick. You are used to sleeping in the day, to living a half life in comparison to before."
He is right. Before RA I would have done the school run, cleaned the house, run 10K and made dinner all before 11am.
But I don't know that person anymore. She is a world away.
"But maybe I am going to keep getting better on my own off drugs. Maybe it's reactive arthritis."
My Specialist looked at me patiently and kindly and said "You do not have reactive arthritis. You will not get better on your own. The RA in your body is recruiting joints and it will continue to do so. You have failed the first two types of treatment. They never made an impact. It's time to move on to the next level."
I have been put forward for a study into Biological drugs. If I qualify I will be able to start treatment sooner. My doctor is keen for this to happen.
I am worried I won't qualify for the study, and I am even more worried I will.
If I don't qualify does that mean that I am not that bad and therefore making a fuss over nothing?
If I do, does that mean I really am sick?
I don't want to be a sick person. I want to be pounding in my barefoot trainers to 'My Sharona' by The Knack, my feet hardly touching down before they rise again, in time to the beat, in time to my happy heart.
I want to run till my lungs scream and my legs tremble and the blood is roaring so loud in my ears that I can't hear The Beastie Boys telling me to put my Root Down.
I want to run until I feel like me again.
I do not want to be tested. I do not want to go to hospital every week. I do not want my husband to have to do the school run, his sausage fingers working at tiny pearl buttons and lopsided bunches.
I do not want to sleep after I have finished this.
I want to be a fraud.