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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

So, those of you that are my Facebook friends know that Thursday night wasn't a good one for us. I knew that Bean was struggling with pain all day but darn her she refused to admit it. She wasn't walking right throughout the day but instead doing that hopping thing she does. She always says, "I do it because I like to." BALONEY! She also couldn't sit right. She would try to tuck her legs under her, then she'd lean over sideways, then scoot to the edge of the chair, then stand, then start it all over again. My rear end you aren't in pain! That night I told her she was going to soak in a nice hot bath after dinner. She loves her bubble baths so she went along with this without a fight. After I shampoo her she likes to have the curtain closed for playtime. After a few minutes I peeked around the curtain and found her pressing her bath pouf into her knees. I asked her, "What are you doing?" That startled her and she just looked up at me with her HUGE brown eyes. That was it, I knew. She said in the smallest voice, "My knees hurt, I'm trying to make them feel better." I asked her, "Why wouldn't you say so every time I asked you today??" She just shrugged and continued to kill me with her big puppy dog eyes. I told her just a few more minutes then I want her out so I can get her lotioned and dressed before she got cold. I went back into her room and paced the floor trying to sort it all out. WHY DO THEY HIDE IT? WHY?! I don't understand this part of it all. I calmed down and went back in to get her out of the tub. As I was rinsing her she said, "I have two purple toes." HUH?! WHAT?! That was inside my head. I said, "You have what? Purple toes?" This was a new one. She said, "Yep, see? And they hurt too." Sure as you know what, she had a purple toe on each foot. I was beside myself. I took a moment, then looked at her and said, "THIS is why you NEED to be honest with us. I could tell ALL day that you were hurting. If you had been honest I could have given you something for the pain before it got to this point." Now, some of you may be wondering why I don't give her something anyway. Because, so much crap goes into her body already on a regular basis I hate to add more. I also want her to learn to take the initiative and or responsibility if you will for knowing that her body needs the help of an additional medication. So at this point I told her, "Okay so now we need to do Motrin every 4 hours until we get this under control OR Celebrex every night." She gave me "the stink face". Those that know Bean KNOW that face. We stared each other down until she broke and said, "Fine....Celebrex." So each night since Thursday night she has taken a Celebrex. Gotta say, today she seems GREAT. We'll see how things go. Okay so the song you have been listening too? Well after this all went down Thursday night I was in a state. Anger, frustration, sadness....I was beside myself. Thank God for putting such awesome friends in my life. I was messaging back and forth with two of THE BEST and they got me through it. During this time I was listening to K-Love, as I normally do while in the kitchen, and this song, Beautiful by Mercy Me came on. I've heard it a few dozen times before at LEAST. This time, it took on new meaning. Thank goodness the dog had to go outside and I was able to go out and have a cry in private. I posted it on Facebook and it touched some hearts and lives their as well. God can do amazing things when we open our hearts, eyes and ears to Him. For the time being I have disabled my playlist so that this song can play. Hope it can help you too.

John 8:12


12 When Jesus spoke again to the people, he said, “I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.”


6 comments:

Deetipton said...

I missed Thursday night. I was 98% out of it. Sorry :( I finally got Em to tell me a bit more often than she used to but we still struggle with the same things. The purple toes make me think of Raynaud's. Watch the hands and feet. True Raynaud's goes white as the blood stops, then purple as it starts to move, then red as it goes rushing back. It hurts, too. I hope that it isn't, only because it's annoying. Nothing HUGE, but very annoying.
Also, I had felt the connection with "BeautifuL" as well. Especially because of the Prednisone weight. Em is so bothered by it but when we first heard the song it was like "See? This is what I've been trying to say". I <3 MercyMe!!!

Amy Cunningham said...

Girl I cannot IMAGINE how hard the impact of the steroids have been on y'all!! I bet that this song struck a cord with you and Emily. For me it was a few lines in particular. "You are made for so much more than all of this." "You are His." "Praying that you have the heart to fight, 'cause you are worth more than what is hurting you tonight." :)

Alexandra {{Awareness Warrior}} said...

WHY DO THEY HIDE IT? WHY?!

My name is Alex; I'm @AlexaMikaela on Twitter. I was dx'ed with juvenile dermatomyositis in July '05, less than a month after my 10th birthday. And, it doesn't matter that I'm not 6 like Jenna, or 8, or 10 like I was when we finally got my diagnosis, because I'm 15, and I often still hide my pain until it's unbearable. Sometimes I still try then. It doesn't work, though. I limp, or fall, or just don't move until my mom catches on and then she still has to force me to take pain medicine. We shout at each other over it, because I am not taking one more pill if it kills me!. I think for me that's what it amounts to with my pain medicine -- not wanting to take one more pill. It's like, if I start it, will I ever stop it, or will it be like all these other meds? If I admit I'm in pain, I admit something's wrong. If I don't admit something's wrong, than there's nothing wrong and everything's okay, and I don't need to worry because there is no way that I could relapse if I'm not hurting...right??? I know my logic doesn't make much sense, but I don't always realize I'm doing it. Jenna probably doesn't, but she might, at least subconsciously.

If I'm not in pain then nothing is wrong. (I am in pain)
If I ignore that I'm swelling it will just go away. (Not always)
If I wait it out, the purple will go away. (It doesn't change that it's there)

There's a lot of reasons that we hide it. I'm better about it now, but I'm also very good at hiding it, too, when I do.

---

As I tweeted to you:
"I'm glad I'm the sick child & not the parent."

Amy Cunningham said...

Alex, your logic makes COMPLETE sense. Thank you SO much for explaining all of this to me. I really cannot thank you enough. I pray that one day no child should suffer. Until then, thank God we have angels like you.

Alexandra {{Awareness Warrior}} said...

You're very welcome. You don't need to thank me! I'm just glad that it helped some.
And while I really appreciate the amazing compliment, I am no angel.
God bless,
Alex

PS: Please pardon the choppy comment. There are two little boys (okay, 12 & 13, actually...not so little anymore) having a sleepover in the background, who definitely have no mobility issues, judging by the flying Nerf darts and buzzing lightsabers and. . .

Deetipton said...

She has JDM!!! Ok, I'm only getting excited because NO ONE has JDM! Well, my daughter does. Amy, ask Alex for clues. I love that there are people going through it that want to talk and explain. That makes me so happy, being on the side of sometimes needing explanations!
Yes, that does make sense. I do that with things, too. Not often, but I have done it. I get it. Thank you!!!
(I sooooooo have to friend her...)