Friday, October 29, 2010


I have spent the past two days on 1-405.  Every time you make a turn there was an accident.  It was maddening. I had the urge to go on a family road trip.  A get a way with the family of sorts.  We have all been in a bad mood for some reason.  Yeah, well, my urge was cured over these past two days of sitting in the car with Gary.  Screaming and kicking the back of my seat.  I am not a nice person when returning home.  Everyone runs and hides.  When the door swings open to my house and step through the door, light flashes, and thunder rumbles.

The appointment went fine.  The doctor like the drug combination we are on and has a good feeling about it.  I was honest and said I didn't agree just yet.  Gary had fallen asleep on the way there.  He woke up with hot, itchy, red skin.  His cheeks looked like we had just come in from the sun all day.  His finger were red and inflamed.  I was not happy that he was doing that, but glad the doctor could see it first hand.  In the back of my mind I was expecting to fight off more tapering.  Meaning I was waiting for her to say, lets go down on the steroid again.  But she didn't.  I was able to tell her though that is why I called from the infusion center yesterday to have the Rituxan levels checked.  She said it was much too soon. I figured but needed to cover all the bases. Really, Gary isn't doing bad.  BUT its the same old same old.  I can tell his disease is really angry about all this immune suppression and drugs it is trying to be stopped with.  As always, metaphorically speaking, we are throwing dirt on a big bon fire that refuses to go out.  It's smoking and hot in the middle.   When she asked me what I thought, I grabbed my head and said, "you know, I want to give the Tacrolimus more time.  I don't like the fact he is doing what we did in the beginning.  The sudden onset of red, crazy, itchy skin and swelling."   I continued to explain that I know we have come a long way, but I am not sure.  The only time I was so excited was a couple months ago just after he had his first dose of Rituxan.  That was short lived.  But its hard work.  Only time will tell.  It's a fun thing to sit on.

We chatted about Gary's rage.  She said and I quote, "He has been through a whole LOT. A LOT"  She was sympathetic and suggest we get a punching bag to channel his aggression.  Hmmmm.  I like that.  It's worth a try. Gary, your sisters nose, NO, punching bag, yes.  Don't get me wrong.  I don't mean to paint him out to be a monster.  He is very very sweet.  But he is three and has unpredictable actions occasionally.  But Hey, don't we all.  We also talked about the Child Life Specialist.  We are going to try giving him some Adavant for next months infusion.  It helps him chill and will take the edge off.  I don't want to give him another drug of any kind, but I don't want him to be an axe murdererererer either.   So.
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We then talked more about the calcinosis.  The only thing I can do about that is make sure she feels it and is monitoring it.  I told her it is unnerving for me to feel the calcinosis, especially on the inside of his thigh were it is much bigger and feels bigger and meaner than around his chest and throat.  I maintain as long as it stays where it is.

We had a med change.  One for the itchy skin.  Trying a different one to see if it helps.  My favorite was, "itchy can be caused by anything."  TRUE.  But not AS MUCH when you have JDM.

Hook, Jab, Bob.  Keep fighting!


  1. You keep fighting MaMa! You are doing EVERYTHING right! You know, when you think about it, he has every reason to be alittle PISSED off. He didnt ask for this and neither did you and Robert. I think the punching bag is a great Idea. We could all use a life-punching bag once in a while. Hang in their Lady, and let me know if I can do anything. Please! xo ((hugs)) Kelle'

  2. Just wanted you to know I stopped by to see how things were going. I cannot believe how big he is. I know it's a day, by day, by day thing. Keep up the amazing work Momma! You are doing great!

    Hugs and Love

  3. good morning Erika,
    It has been too long since I have checked out the blog, and it was good catching up. Hope all is going well today with Gary. Hope the holidays are good to you and your family. Will keep in touch better now. Take care and God Bless......
    Proverbs 17:22 - "a cheerful heart is like good medicine "