Thursday, February 3, 2011

Infusion, Dr. visit & first Myositis flare

As it nears Remicade infusion day, the tension tends to build.  By the day before, Em & I are both a little crazy.  Monday night I was laying down watching TV when I heard crying.  I went to go investigate, & found Em sitting on her floor sobbing hard.  I sat & held her, talking to her, getting her tissues, cuddling.  Why so sad?  She was terrified to go.  It is absolutely heartbreaking to watch her get so upset about something that she needs- especially when it's something that kids shouldn't have to go through.

The drive up is always kind of somber.  She looks like she's going for her execution or something.  On our way up, I heard Mandisa's latest release, "Stronger".  I cannot explain to you on how many levels this touched me.  For me, for her.  It seemed to hit on exactly what we were going through.  It's amazing how God can work in our lives, putting in front of us just what we need, when we need it.  That is how this song felt.    

After we parked, I asked her if she thought she could walk across the street and hospital or if she'd need her chair.  She said that her legs felt tired.  Um-hmm.  Putting the puzzle pieces together, thinking about how her knees looked bright red but didn't hurt.  I thought it was my imagination that her elbows were looking more red.  Once we got into the check-in area, she was called back quickly.  I asked right away if Jason, the one guy that can get her on the first stick, was available.  Our lucky day- he had just come off of lunch!  I was a little worried at first.  He couldn't find a good vein.  The one that he could feel was deep and they didn't think they could reach it.  Somehow, he managed to get it on the first try, plus they were able to draw blood from it without it collapsing!  What a relief when that was over!  Of course, her blood pressure ran high the whole time.  I was a little worried about that since she's on medicine for it.  (And by the way, her Raynaud's has been flare free!!!!!  Wahoo!)

Here's where she got mad at me:  I pointed out to the nurse practitioner that her knees were bright pink and puffy, but she claimed they didn't hurt.  Her face rash looked ok, but that isn't the only marker.  Sure enough, the nurse practitioner said that it looked like a flare, probably brought about because Emily had bronchitis & a cold.  I guess she was afraid to see the doctor, knowing that she was flaring.  When she came in and tried to look at her knees, Emily screamed at her in a way that I've never seen her do before.  She claimed it was because her hands were cold.  I was embarrassed!  It was vicious sounding!  I found out the real why later.  I took Emily to the bathroom a little later & she asked me if she was staying over.  She seemed unconvinced when I told her no.  So I asked her, "you knew that your JM was flaring, didn't you?  Is that why you didn't want to come today?"  Yup, that was it.  She was afraid that she would be kept as inpatient because she was flaring.  Poor little kid!  I think that subconsciously I knew that she was flaring.  I have tried hard to prepare myself for the fact that this will most likely be something to come & go for many, many years to come, but I think a part of me has still been in complete denial that she's flaring.

In the end it turned out to be a good appointment.  We are still able to decrease her Prednisone to 15mgs daily, while increasing her Methotrexate to .6 on the needle.  I was very surprised about that!  I was completely expecting to have to increase Prednisone, so that was a pleasant surprise.  We even got out a little early!  We were back home by 6:40 PM.  Usually it's after 8 PM when we get back.  At least the drive is scenic.  I have wondered what it will look like through the spring and summer  :)  I don't look forward to the long drive, but I do enjoy the views!

Last thing- She was talking to her Daddy this morning in the kitchen, telling him what her legs felt like.  She says they feel like there's metal in them, they're heavy.  Right now it's just in her legs.  We had another nice chat about being honest with us about how she feels.  I tried to explain to her that I read so much in books, on the internet, and in my Facebook support groups that I pretty much know what's going on.  Yes, I will have questions that I cannot answer myself or via FB, but I have a pretty good idea of what's going to happen.  If she had been honest with me, I could have told her what I thought the doctor would do.  I could have helped with a lot of the fear... if she had let me.  We all have a cold right now, except for Gir.  I'm barely functional right now, but we keep it together.


  1. Oh Danielle :'( Bless that poor girls heart. That, and I would like to smack her! LMBO! WHY are these kids SO danged stubborn?! Jenna is back to not only not sharing what is going on but blatantly denying it. HELLO?? I seeeeee you limping child! I seeeeeee you laying on the table during dinner! I seeeeee you hesitate at the bottom of the stairs! URGH :(
    Oh, and I also love how a song came on the radio at JUST the right time to lift you up and carry you there <3

  2. We LOVE Jason. Usually he is the only one that do a blood draw for Jackson.

    PS. I miss you something fierce.

    PPS. Give that kid of yours hugs from us! Heck, hug em all for us!!

  3. Amy- I know. :( If she had only said something, I could have eased her fears. I told her that as much as I read & talk to people, I knew she wouldn't be staying over, & I knew she was flaring. I didn't want to *admit* it, but I knew. We so need to meet. I'm trying to figure out, though... why prefer Twitter over FB? Just curious...

    Courtney- I miss you, too! We need to organize some sort of family day again. Hopefully, I'll actually be able to go! And yeah, Jason rocks! We are blessed that he has always been there so far when we need him. I think if he's not there we'll ask for Stuart from #42 unit. He was really good, too.

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  5. Hey there Dee,

    I read over my recent comment and it just sounded, flat and unconnected. So I thought I would try this again.

    You visited my blog at I haven't posted any information on the diseases your daughter has and to be quite frank, I'm not sure why I haven't done so. I am going to rectify that though and will be posting articles and links to more information about the diseases and the medications she is on. I want to help Emily and children like her, I want to let the world know that there needs to be more funding for research in these fields of medicine.

    I am a Health Information professional, I do searches on health conditions, medications, clinical trials and alternative solutions to traditional medicine. I'm not trying to sell you my services, I guess I just want you to know that I'm real and that I want to help you find information on Emily's disease.

    I have found something that helps with my pain, depression and anxiety and I know it will help you and your daughter. It's called Brain Wave Entertainment and you can download them at for free. Brain Wave Entertainment is tones and frequencies that mimics what your brain produces naturally, for the right side to talk to the left. I use them to relieve my fibromyalgia pain, it feels like someone has taken a ball bat to my entire body whenever I have a flare. The thing is, that when I use them for the fibro flares, they also got rid of the pain from my RA and osteoarthritis. And I lost that fibro-fog, depression and any anxiety I had been feeling. I used the BWE in May of 2010 for the first time for three days. After that time I was pain free for 8 months and just recently had to do them again. There is no limit to how long you can do them. You listen to them with headphones. I can't promise they will help your daughter but I feel they would be worth a try. Even a little relief from the pain is better than nothing. I forgot to mention that they also helped me to sleep. I would stay awake for days because of the pain but know I sleep like a baby.

    I can't pretend to know how you feel but I can imagine and I will pray for you and Emily. I want you to remember the story of Job in the Bible and keep your faith just like he did. God will answer your prayers because you will have many praying for you.