Not a Good Night

(Marian sleeping this morning. You can see the bags under her eyes. I know I'm going to find out this was not a restful night.)

Yesterday Mary wasn't feeling very active. She spent most of the day in the recliner on my phone. She was so excited to get KIK so she can talk to her friends. But around 11pm, she sent this to my messenger:

"I'm hurting so bad right now and me and daddy don't know were the meds are plz answer back as soon as u read this. I'm done w/ the phone and I can't walk. This is an emergency! I need you and I need you now!!!!"

I took her the Ibuprofen and put her to bed. I told her that she needed to give the phone a break sometimes, and sitting all day in the same position isn't good for her joints either.

But honestly, I was screaming inside. This isn't fair!! She's 10. 10!! She shouldn't be hurting like she's my age. I should never have to get a text like that from my child.

Now I know that I am supposed to be strong, I have to hold it together for her and for everyone else, but sometimes this is too much even for me.

She asked to spend the night with a friend of hers who she had never stayed the night with, her and her family are more like family to us, so I took her over to stay with them. Before I even left, she went over to the couch and said she needed to sit down for a minute, she was feeling a bit dizzy. I didn't think it was alarm for anything, dizziness is a norm for us some days. It comes and goes. So I just let her sit down and I sat with her for a few minutes. Then when she seemed ok, I left. Around 11pm, I got a phone call that she was very dizzy and had vomited. So I went and picked her up. Got her home, tucked her in and she went right to sleep.

I asked the support group that I'm in on Facebook (for families dealing with JA), if the dizziness was a part of the JA, and they say it can be. It can also be hormones because of her age, it can be the medicines that JA kids are on (but Mary hasn't been put on anything yet other than Ibuprofen), it can be something called POTS Disease, (We can not deal with another disease). We are still figuring our way around this one!

Right now her right shoulder is hurting her, her hip is giving her lots of trouble and her wrist is hurting her and swelling further up her arm now.  This is craziness!!

I don't know what to do for her. And as a mother, that's not ok. It's not acceptable. I am her protector. I am supposed to have the answers. I am supposed to be able to stop the pain...and I can't. No matter how much I try, I can't do anything about it. I can't even get the Rheumatologist to get her in sooner. What do you do when you can't help your child? You panic. That's what you do. You stress and you freak out inside. You worry. You lose sleep. You think about ways to help her, nonstop. And then...

You just break. I worry constantly for Mary. I just want her back to herself.