Wednesday, February 15, 2012

Drowning My Worries in Chocolate

Have you ever been in a situation where something is obviously wrong with yourself or someone you love, but you can't figure out what it is? There's a visible problem, but no one can tell you why it's happening, what started it, or when it will go away. A certain amount of terror starts to creep up your spine as you realize that no one has a clue as to how to help.

I'm afraid that's something that I'm going to be dealing with over and over again as a mother. Especially, as a mother of a chronically ill child.

Emma has a rash. It's been there for about a month. We tried antibiotic ointment. Nothing. Topical steroid ointment. Nothing. The really fantastic thing is that it has spread to a larger area of her body and has changed it's appearance. Em's amazing doctor doesn't know what it is. Her amazing rheumatologist doesn't think it is a reaction to her medication. A dermatologist took a peek at it today and doesn't know what it is. I'm taking her to a pediatric dermatologist later this week and am praying she knows what is going on. If no one can explain it, no one can help me fix it. I can't stop thinking that it is some complication of her JIA.

Add to that the recently released research results (That was one amazing alliteration.) that children with JIA have a higher risk of developing cancers than their healthy peers. Great. Then remember the challenges that go along with the fact that I am injecting one harsh chemo drug and one biologic immune-suppressing drug (that may increase her risk of cancer) into my 26-pound toddler each week, all in the name of controlling a disease that could otherwise destroy her body.

There's nothing that makes me feel more pathetic than being completely incapable of helping my child.

Please also remember that I am full of pregnancy hormones. That explains why I kept crying today after getting "I don't know" and a bag full of toxic medications from the doctor's office.

And that, my friends, is why the gigantic container of chocolate in my kitchen has several less pieces in it now than it did this morning.

5 comments:

  1. Thinking about you friend and sending you love!

    ReplyDelete
  2. Sending you huge hugs...and remember, the calories fall out when you split the chocolate with a friend, so if there's anyone you can call to come over and sit with you...Love, Gail

    ReplyDelete
  3. So here's the truth. Doctors are great. But mommies are better. If I were in your shoes I would go to all my JIA forums and post pictures of the rash and ask other parents if they've dealt with it before. I would also post pics on medical blogs and forums and see what the internet docs have to say. I would also google images of rashes until I found matches and see what those people were diagnosed with. I've seen the rarest of disenses diagnosed online because people outside the problem can sometimes see the problem differently. If you want to send me pics, I will join the hunt with you. Then you can take your hypothesis to the dermatologist and get him/her thinking outside the box. You are your own best advocate!

    ReplyDelete
  4. I'm so sorry you have to go through all this. I agree with Melinda, moms do know best. I have gotton so many looks from docs and nurses thinking I'm wacko, when I have been right. Go with your gut and it will get taken care of, Emma can't be the first person on the planet to have this rash, just stay on the docs to figure out what it is. Wish I was there and I would bring over some chocolate.

    ReplyDelete