Wednesday, January 5, 2011

It Never Ends

Since Bruce had his Enbrel adjusted this past Nov., he has been doing very well.  The physical therapy was helping him to become stronger and his pain has been a no show.  What a turn around from 2009 upt til this past Nov..  It took one whole year to diagnose and then to get him on the right medicine.  Its amazing what a little adjustment can do and then hey, we find the correct dose and BAM! Bruce felt better.  Just a couple of days and he was a different kid. I never rest easy.  Bruce's illness is here to stay right now and the scary part is that you never know what is going to pop up.  I bug the crap out of Bruce Jr.   How are you feeling, are you hurting, why are you walking funny, oh I could go on and on.  See, Bruce isn't a complainer.  He wont tell me that something is bothering him until I flat out ask him.  Even then he normally tells me hes fine.  I've explained to him that in order for me to be on top of things that hes got to tell me, so if it can be can.  I've explained that he has to use his words to tell me how he feels. I wouldn't ask so many questions if he would open up.  So when he gets up in the morning and I ask him "how are you feeling?" His response is "No pain!, No Stiffness!, and No hurting!. This works out well and it keeps me off his back. I think that as a mom your kind of waiting for the other shoe to drop.  Its an unease when everything is going well.  Almost like its been too long, nothing is happening.  It might be that for such a long time every day was something new. A flare. A new joint. Severe pain that we don't know where it comes from(scratching our heads). A limp. Fatigue.  Weakness. Bowel problems.  Medication reaction. You name it , anything goes. Or... I know my child so well that something seems off.  Heck Bruce Jr. may not even know it yet.  So it also may mean that your gut is telling you something.  In which case it is.

Yesterday Bruce had his eye appointment.  I was a little worried.  We had not gone since last January.  At that time he went in to check for uveitis which was clear and then had to come back after the steroid infusion.  All was clear and since he wasn't going to continue on the prednisone and we were between doctors it was put on the back burner and we didn't get it done until a year later.  Bruce's nurse said at least every 6 months.  So I was a bit concerned but all was fine.  The doctor didn't see any cells or inflammation but hes on the cusp for glasses.  The eye Dr. doesn't want to take any chances so we will be seeing him every 3 months.  Bruce still has inflammation in his body and that means he can get inflammation in the eyes as well.  Even though its 3 months away its still another thing that I have to keep track of and yes worry about too.

We all went as a family to the playground and Bruce picked up a stick and was acting like it was a cane.  He was running around chasing after his sister Katie and both me and my husband noticed Bruce running odd.  It just didn't look right.  I'm glad Bruce Sr. was there because sometimes I see more than he does, so this was a very quiet sit back and watch for him.  I had told my husband that morning that over the last couple of days Bruce's back just didn't look right.  His right hip is swollen and I noticed that his knuckles were too. We had talked about going to see an Orthopaedic Sports Medicine Doctor here in Melbourne or off to an All Children's Doctor.  During this time he still was using the stick as a cane and it made us wonder if he needed it. 

Today Bruce was playing outside, still running funny and he told me his Achilles was bothering him.  Later, in the house he was walking on tip toes.  He said it stopped hurting.  I told him to walk heel to toe and he said it hurt.  It stopped hurting because he was walking on his toes!  I swear its like pulling teeth to get anything out of him.  Bruce brought home the stick and used it off and on through out the day.

So, in a short amount of time that unease creeps back in and you see things that are "off" and you follow through because you have to.  We don't know if its something or nothing but it will be checked out.  Tonight I will go to bed and wonder if Bruce will wake up in a flare or if his Achilles has calmed down.  I will call Dr. N and then make an appt. with an Orthopaedic because we have to make sure his medication is correct and that he doesn't have more issues going on with his back. 

It never ends now but maybe with our watchful eyes, gut feelings, and never ending questions we can somehow make this illness stop. 


  1. I am just as bad as you, on her case all of the time asking a million questions about how she feels. Emily is exactly the same way about not wanting to talk about it, or just saying she's fine. GRRR! It drives me batty! I hope that this new thing is nothing! Bruce needs and deserves a break! Ya'll are on my long prayer list!

  2. It sucks. This may be the worst part of the whole disease. Watching them like hawks, waiting for SOMETHING to happen. Waiting for SOMETHING to go wrong. We can never be at ease.

  3. Bruce may be protecting you and hiding as much as he can! Remember - Bruce has to learn to live with JRA and be independent. I know as a child- I never complained and got annoyed at my mom for always asking. For the most part it always hurts- and there is no quick fix, so why talk about it daily. When I had bad, bad days- everyone knew and it was obvious! try to encourage Bruce to be open with you and that you need to know to help him! Its hard..very hard! Everyday it changes...Yes- you never kow what tomorrow is going to be! Hang in there.... Hope Bruce responds well to Enbrel! You're in my thoughts & prayers!