Emily had a really hard day on July 5th. It seemed like she hurt in more places than not, but instead of turning into a major flare it was gone the next day. I'll never understand how that works. She's been getting more "beeping" (throbbing) pains lately. I'm not sure why, but I think it's starting to scare her. She doesn't usually talk about pain that much with us, but she's been bringing those to my attention quite frequently.
I can see the difference since stopping her Methotrexate. I can still see her knuckles, but the skin on her arms is tightening up again. We had a whole two weeks that her arms were soft and her injections were smooth. I am still mourning the loss of the MTX. I hope that we can resume or find a suitable replacement soon. The Raynaud's, at least, has been behaving. It still makes me sad when it's 80F in here and she has on flannel pajama bottoms and a long sleeved shirt.
I don't really stop to think too much about how this affects her sister & brother too much anymore. I know that in the past it had a HUGE impact on our family dynamic, but since she's felt better I've stopped thinking about it as much. On Monday when she was in pain my son asked me "Mom, do you have arthritis, too?" (I have a touch in my knees... not enough to slow me down yet. I suspect I have it in my shoulder, but my pain is so miniscule compared to hers that I consider myself pretty much arthritis-free.) I asked him why he wanted to know, & his response was "Because I know that Emily is in a lot of pain all of the times & I don't want you to be, too." I love this boy!!! What a sweetheart worrying about us. I thought that was so precious. He's having a tough week, too. His asthma has been acting up. He's on Advair twice a day, and taking albuterol via his nebulizer twice a day. His cough is finally getting better. We've been working on how to breathe properly. You'd think that would be second nature but apparently not so much! No, my little people don't have it easy. But they do have plenty of love & support. I guess that in the grand scheme of things how could you ask for more?
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
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