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, "Well...it'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.
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.
Monday, December 20, 2010
Start a team of your own or join one already formed, OR, register as an individual. It's FREE to register and if you do so by 12/31/2010 you are entered into a drawing for an iPAD. You really can't beat free WITH a chance to win. All for such a great cause too. Whether you have arthritis, someone you know does, or NOT this is such a fun event. So, click the link below, find your state and GET MOVING! If you are in or near Charlotte NC please join us on Beanz Buddiez. Thanks so much!
Thursday, December 16, 2010
You'll have to "stay tuned" a little bit longer. We were supposed to have Beanz 504 plan meeting this morning at 8:00 AM, BUT, Mother Nature walloped the South with a nasty wintry mix storm. We were warned of it by lunchtime yesterday, road crews were out pre-treating roads, news stations were all buzzing about it. I told Larry that I know if our meeting is messed up on account of the weather it's okay, I know He has his reasons. For whatever reason, we just can't seem to get this meeting to happen. It's not for me to understand, only for me to have faith in Him and in His plan and His timeline. Our Pastor said something awesome this past weekend. He talked about how throughout our lives there are so many things that we can't make sense of. But in the end it will all be revealed, it will all make sense. He called it "The Great Reveal", I took great comfort in that thought.
But if we hope for what we do not yet have, we wait for it patiently.
Monday, December 13, 2010
So some of you may have been left wondering, what ever happened to Bean getting a 504 plan put into place? Yeah, we've been wondering that too. We last met with her teacher and school guidance counselor on Monday November 8th. If you'd like, you can go back and read all about that meeting here. I gathered all of my info from our pharmacy, her doctors and the Arthritis Foundation. It's a LOT of info making up a big, fat, blue envelope :) Of course there was the Thanksgiving break to get in our way and slow us down, and I know it's only been just over a month, but MAN it feels as though this has taken forever. I got an email from her teacher (LOVE her btw) this morning saying that we are on for this Thursday December 16th at 8 AM. Finally we are getting somewhere. Now I'm nervous though. After how badly our last "meeting" went, I am just terrified that I will either 1) Break down in tears of frustration, or, 2) Have a major angry fit. Either one will be ugly. So, please pray for ALL of us that will be in this meeting. Thanks y'all, and, like the title says, stay tuned...
Thursday, December 2, 2010
I am after all only human. Therefore, I make mistakes. Sometimes, they are really big ones. I have some doozies in my dossier. One of them, I am now ready to admit, *sigh* was switching Bean from Duke Children's to Brenner Children's. Going back to this post, which I just did, this is when I had decided that Bean and Mommy had had enough of the two hour drive to Durham. I just couldn't do it anymore. I felt that there had to be other options that were just as good. For the record, I gave hubs the opportunity to say, "I told you so" the other day. He didn't which only made me feel worse. So December '09 was her last trip to the Duke rheums and February '10 her last trip to Duke Eye. All this time I have felt okay with her care at Brenner and at Cabbarus Eye. BUT, over the last couple of months she has been having some issues (pain, fatigue, etc) that I don't feel are getting addressed, there is a HUGE breakdown in communication that is becoming ever more apparent. Also when I did this post I realized that she isn't seeing a board certified rheum and from looking at his credentials I'm not even sure if he is trained? The more and more I think and process it all through, I'm not happy with her care. CRAP. That means 1) I need to admit I was wrong and I hate doing that. 2) We need to start making that drive again. CRAP. When I mentioned it to Bean she wasn't impressed :( Just to be sure of everything and get a professional opinion I made an appointment with her regular pediatrician. Now this woman I love and trust 100%. Yesterday we went in to see her. We talked about Beans pain, fatigue and our concerns over what to do now about her specialists. She agrees that the pain and fatigue are not normal and not okay. Also not uncommon for a specialist of any kind to miss it. If it isn't on their own radar under the umbrella of what they treat and look for then they likely won't catch it. For instance, her routine labs, they're routine labs for a rheumatology patient. They won't necessarily help diagnose another possible issue. So she is running what she calls her "fatigue labs". Did you know that it isn't just the AMOUNT of red cells that count but apparently their size too? I found that very interesting. Don't ask me for anymore details. I can't retain more than one line on any given topic, sorry. So she is going to check all kinds of "other stuff" if you will. I am really hoping she finds SOMETHING. If there is nothing....then what?? Bean scared the crap out of me after her labs by the way. When we got back to the waiting room she started freaking out and crying saying she couldn't see because everything was blurry. I told her she likely got up too fast after the blood draw, not uncommon, you'll be okay. She didn't look so good so Daddy (thank goodness he came) carried her out to the truck and got her into her seat. She was ZONED OUT the whole way back to Mooresville (about 20 min). That isn't normal is it?? So anyway, we also talked to her about our concerns with Brenner Children's (not so much Cabarrus Eye) and what does she think about all of it?She said as both a Mother and a physician, NONE of it sits right with her. That being said she also HATES driving and saw where I was coming from. But, the lack of communication (I can't even get his danged nurse on the phone!), the fact that he isn't board certified and last she knew was only a general practitioner, the docs at Duke are known for their training, are board certified AND associated with CARRA, and that general Mom gut feeling has us all thinking that it's time to go back to Duke. She said it shouldn't be an issue to get her back in because she never really left. She also said if there IS any issue, be it insurance or otherwise, to tell them to just call her and she'll take care of it. The kids drove me crazy yesterday so I didn't get to call. I called first thing this morning. It took some juggling and calling back and forth from eye to rheum but we now have appointments on March 9th 2011 at Duke Children's Rheumatology and at Duke Eye. I actually never managed to get her appointments coordinated like this before (maybe once) and that was part of the problem. But, now I know it just takes calling back and forth and if it's a pain for them to change appointments around, oh well tough noogies, figure out a better system folks. So that's where we stand, we are waiting on lab results from yesterday, she goes back to Duke in 3 months, she has appointments at Cabarrus Eye and Brenner before then, not sure if I'll take her or not. I guess we'll play it by ear.
WOW, sorry this got so long winded! I hope you are all having a blessed holiday season.
Isaiah 41:10 (New International Version, ©2010)
10 So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.