Tuesday, March 1, 2011


I would like to know how it is possible to feel so good, yet have labs come back so bad? It doesn't seem possible but it is.

Since Mid to late December I have felt really good. I'm tired, still have some pain and stiffness in the morning but for the most part I feel good. I had my lab work done 2 weeks ago for my appointment. I figured things would be the best they've been in years. WRONG!

I don't even know what is wrong. I still have swelling in my hands/wrists but it's not as bad as it's been so I assumed it was normal. It's not. So we're upping my MTX again. I'm still not sleeping great so I'm going to try something else for sleep. And we've officially changed my diagnosis to seronegative RA from "a connective tissue disease". All that means is my rheumatoid factor is negative. Treatment is still the same. I'm still borderline for lupus- so we're treating it since I did test positive 18 months ago, positive for APS and we're adding fibro! Lucky me! I've now lost count of all the labels I have :)

Jordan had another infusion a few weeks ago. She's responding really well to the Remicade. Eyes and joints look amazing. I hope she keeps responding. I hate these meds but she's doing things a normal kid does. She says she has no pain which is amazing. And she's going to be 9! Can you believe that? 9. It seems so weird. She's such an amazing little person and we are so blessed to have her.

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