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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Sunday, December 26, 2010


We had a MAJOR break through tonight! It comes with good news and bad news. I am totally focusing on the good news!! So, as Larry and I were cleaning up from dinner we reminded Bean that as soon as the kitchen was clean, we needed to get ready for her shots (tonight was double night). She started to whine about it as she always does. We reminded her that she NEEDS these shots. This is our weekly go around on the shots. So she says, "But the Humira makes me hurt worse." I said, "Well, I know it hurts to get the shot but it helps right?" She tells us that the next day she always hurts worse. WOW! WOW! This was so huge for her! I had to take a moment to compose myself so that I wouldn't scare her off. So I ask her, "So the next day your pain is worse. What about the day after that?" She says, "'s a little better on that day." I ask, "So each day the pain gets less and less?" She says that's right. I pointed out that she started hurting on Thursday of this week. That's going into the weekend she gets Humira. So apparently the pattern is get the shot, hurt a day, feel better until a few days before the next shot. Going to keep a close eye on that pattern. Seems like that's wearing off too early? After that conversation I had her show me her toes and knees again. She was showing me which toes hurt and they are still slightly purple. Then I checked her knees. The left one doesn't look too bad but the right is still really squishy. There is too much fluid in it. As I was showing Larry how squishy it is I hurt her. She whimpered and jumped back. I felt awful and told her that I was so sorry. She wouldn't look at me. I held my breathe, then she ran off to do Playdoh with her brother.
I'm not really sure HOW shots went. She broke my heart over it all but she did really well. Instead of fighting she just cried. That killed me....really, really killed me. I hate doing this to her. But, after it was over and I was stroking her hair and wiping her tears away I explained that without these shots her eyes would get sick again, she'd go blind and it would hurt really bad. Her joints would all get swollen, sore and eventually twisted and unusable. So, as awful as these shots are, they really DO make her better. I think she sort of gets it. It's so hard. She is only SIX years old. These are NOT things that a 6 year old should have to deal with. But, it's okay, this will all make her so strong. It's all a part of making her who she is...ya know? So the pic up there is after her shots. All cozied up with a pillow under her sore legs, her new Pillow Pet behind her, her beloved blankey beside her and her new lap desk with new crayons from Nanny & Umpy. And Bub has been waiting on her hand and foot. He hates to see her like this and does all he can to help her. I love these kids. I really am blessed.


Deetipton said...

***HUGS**** I totally understand. I know what it's like to have the shots through the tears, and the pain conversations when previously there was no discussion. She's growing up, Mom. It's heartbreaking and awesome all at once, isn't it? I love that her brother helps her. :) My other 2 try to help as well. Yup- very blessed! :)

Erika said...

Really amazing communication!!! I immediately thought, "keep a journal with PICTURES!" if you could print them off on your computer... write down how the knee feels to you, chart what she said, maybe ask the same questions each day & keep a journal....

Ya, these shots, so not fun, your are worse than our MTX, I totally realize... but we go through that same talk through...I will have to do a write up, our last remicade we had visitors & at age 5, Charlotte was mortified at them seeing her have her remicade (iv hanging from the stand...). AGE 5... i was hoping we were talking about it so much that we would never go through the embarrasment. but.... interesting. I hope that she will talk as much as Jenna... you are on a good journey with her honesty!! :) XO XO XO

Amy Cunningham said...

Danielle, it's funny, when she was 4 and newly diagnosed, she would tell me when she was hurting. It was natural for a four year old to tell Mommy about the boo boos. As she has gotten older, for whatever reason, she started hiding the pain, from us as well as her doctors. So I thought this would be what we had to deal with. Maybe it's just a progression? That we all had to go through? I sure hope this is her new thing. I pray that the new line of communication STAYS open. I love that the siblings want to help! As Erika (hey girl!) eluded to in a recent post of hers, having a sibling with a chronic disease can end up being a blessing for our other children. They are learning compassion and understanding that they wouldn't otherwise know.
Erika, I really should be doing that, keeping a photo journal. I sort of do, loosely, on Facebook, but I don't do it every time I notice something new or different. I really should be better about it. To Charlotte, MTX DOES hurt bad I'm sure!! To Bean it's not bad because the Humira is so awful but to the kids who don't have the Enbrel or Humira burning as it goes in then yeah the MTX is still awful I'm sure :( I'm used to the anger and the fighting at shot time. The crying took me by surprise and it literally tore my heart to shreds. All part of the journey I guess. Jenna Beans Journey :)

Linda said...

What a strong sweet girl! Dont worry about her not sharing everything. I was dx in my teens with JRA and now have full blown RA as an adult, I still hide my pain and cry when no one is looking. Looking forward to meeting you and Jenna at the walk a thon. My team name is Linda's RA stompers.

Amy Cunningham said...

Linda I can't wait to meet you at the walk!!!! I am so sorry to hear that you hide your pain and cry alone. That is heartbreaking </3