Wednesday, February 9, 2011


We had our clinic appointment.  I love my blog!  I don't care if no one ever looked at it.  I mean, it is nice to keep everyone updated but really this is an outlet for me (in addition to running, wine, and talking to my sisters).  I saw someone had posted that people keep blogs to make themselves think someone else cares.  Well, so be it :)  LOL.  I instantly laughed at that remark.  Life is a matter of perspective.   If you can't see perspectives, life tends to be a bit more difficult.  That comment was made by a person who most likely has never been in a situation that solicits hurt or difficulty with there children.  There is a desperation that comes with the process of dealing with this.  The desperation to get rid of the feelings that twist our hearts as mothers.  Ok blah blah blah
s o r r y  Speaking of heart twisting.

Gary has been good.  ( I think I say that every time in effort to paint the full picture )  Gary had another good response with Rituxan up until about Monday.  I was ready to go in to the doctor to say, "I think we should lower down on the steroid again, he has been doing great."  Sunday, however, I noticed he was wearing purple eye shadow.  For a split second I began to search for a particular color in my make up to see if it was there.  Then I stopped and looked closer.  That's not purple eye shadow.  I asked him if he "bonked" his eye.  He said no.  HELIOTROPE  A rash children with JDM get.  A rash he has had before and it's back.  His cuticles this past month had been great.  Before you could see with the naked eye capillaries that were bursting and bending. They were looking beautiful.  I couldn't see a thing.  Until Monday morning.  With just a flash light I could see activity again.  The roof of his mouth has a few purple dots as well.  Monday I was upset and anxious after discovering this.  I couldn't wait for Tuesday to get to his appointment to speak with the doctors and share my frustration.  It lifts you high when you look into your three year olds face and see that normal boy.  No signs of a disease.  Then in one day to turn around to see that face going away and being replaced with purple and inflammation.  The very thing  we keep fighting and fighting.  *If our doctor ever finds the way to my blog, I don't mean to offend anyone* BIG BUTT, I didn't like what she had to say.  I don't agree.  She said she thought his cuticles looked better.  She even handed me the light to look for myself.  I HAVE SEEN THEM!  I took it and looked and thought they look like CRAP.  So the whole twist to the appointment was that Gary has sprained his wrist the night before playing with his brother and sister.  He get complaining and complaining about it.  We were sent to X-Ray because he was getting more and more uncomfortable.  So we wrapped up the appointment and got down to X-Ray.  Just a sprain : ) I am left with rationalizing everything.  I don't know what is causing me to so very frustrated.  We are still a few months off from hitting 2 years worth of treatment.  2 years is not guaranteed.  There are patients who are on medications for years and years.  It's funny you go along fine.  "How's he doing?"......"Really good, thanks"......Then like my sister said to me yesterday, some days, its like I am finding out for the first time.  Like yesterday was the first day I found out my kid has a disease.  I know it is from going along saying "shruggs" we are getting use to this now.  We except it is apart of our life, and we just need to deal with it.  NOT TRUE.  It will sneak in and shove you down.  I trust God with all my Heart.  I trust He gives me these feelings so I am the best that I can be.  If I didn't feel and deal, Gary would be at risk for not getting the care he needs.  I would to sit there and argue with the doctors.  But there is no use in this strategy.  The doctors are human.  Gary's disease and his body are going to do what they are going to do.  *Razzing* the doctor and arguing doesn't get anywhere.  I do advocate but that is a art form in itself.  There is a time and place for everything.
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Still has it.  The large one on his arm has gone down finally.  It is a small lump now instead of a large one.  I think that if they could see all the calcinosis through out his body, they would be surprised.  No one takes the time to really explore it because there is nothing they can do about it. 


  1. Sweet, Sweet, Ericka,
    I love your blog, I love that we have met on here, I hate JDM/DM, I wish it would go away and leave us alone! I read your post and wept, your feelings was if you were picking my brain and I could have written it word for word! I go through exactly the same thing with DM although I am not a child and I can't even imagine how hard that must be for you! I am an adult and I know how bad this stinks! The helitrope rash rears its ugly head on me when I flare and I get the purple in my mouth as well, along with the broken capilaries in my nail beds, it seems as soon as we seem to be making lead way boom two steps back again! I had a really good JHU appt. this last time they said Rixutan is starting to work and then boom I was hit with very scary high liver enzymes they had to cut my methetrexate in half, had a major flare up, upped steroids again, tried to up methatrexate, liver elvated again, had to dropp it now flaring a bit, geezy peezy this diseae uggg oh and girl I hear the oh your rash looks better than it did two years ago and I'm like I know that but a couple mths ago it was gone and now it's back so now what....I am with you you can only say so much to the Dr.s tht are helping and you have to trust in them and God but sometimes it really does leave you scratching your head and wondering is this every gonna go away when will are normal come back? I feel good and then I go to an appointment and it seems as I have just heard I was sick, and you know lots of people find it hard to understand unless they have been there, walked in our shoes, and blogging is an outlet for us, without it we wouldn't have met and been able to communicate and compare notes, it helps me and I sure hope it helps you!

    I am sorry little Gary has to go through all of this and he has the best advocate in you and I pray that he gets in remission soon as well as me! It has been two years since I started this fight and the Dr.s told me I may never come off meds but I have hope I will and I just know that Gary will, he will hang in there,

    I care, I listen, and I love you, Gary and your blog...


  2. Ericka - JDM does SUCK...we are right there with you...the ups and downs are to much some days...Praying for our kiddos and for us mommies...
    Love & Hugs, Sissy

  3. Ericka - JDM does SUCK!! The ups ad downs are to much some days...praying for our kiddos and us mommies.
    Love & Hugs, Sissy