The difference a year makes

[troysmom]

Last year at this time my son's flare up was slowly building, at this point he had JDMS for 5years.  He was active daily in summer camp, we spent many days at the beach, he hung out with friends after school, to everyone else he looked like any other 11-12yo.  I of course knew all that he had endured to get to this point were he could 'fit in'.  I mentioned to the doctors at every visit the slight changes, his energy was waivering.  He need more rest periods and a day off here and there.  But his test results kept coming back normal, the doctors re-assured us everything was fine.  Little things here and there, bottle caps were becoming harder to open, bending over to tie his shoes.  All our fears were becoming a reality.  By October there was no denying a flare up, relapse….How defeating to think of that treatment and the pay off was less then one year of feeling 'normal'.

By December we were completely discouraged by our rheumy's.  They just wanted to repeat the same old regimen, increase the dosage.  But my son and I were tired, we both had sacrificed so much, we both had enough.  SInce December my son has got significantly worse.  He misses more days of school then he attends.  He can no longer dress himself, he was fitted for a wheel chair two days ago, not for every day use but trips outside the house were he just doesn't have the strength or energy to do on his own.  He is in pain so much every day, his skin is raw and swollen.  He has edema in his face.  The list goes on and on….

He started Minocycline April 30th, I know we are on the right road, although I feel like an outcast, I feel like I am always on the defense, protecting myself and my son from other people, their opinions.  I as a parent struggle so much, I am a single mom, I just had to give up my job to be available to my son full time, I have so much guilt, constantly questioning myself, doubting myself.  I realized today I have guilt about having any kind of joy or happiness.  When your child suffers, you feel like you should also suffer.  I feel helpless and powerless.  He is not my only child, I feel over whelmed, I am out of resources.  It has been a long, long road.

He hurts on the inside and now also on the outside.

The minocycline is simply not working fast enough, realistically it takes time and yet we have already given so much.

I am venting, I find myself doing that a lot lately.  I just keep reading and re-reading everything I can about minocycline.  Trying to stay positive.  I am finding resources in my community, I know a year from now we will be looking back on all this, what a difference a year can make.  We have reached bottom, god willing it is only up from here.

Tired of the rain in Maine, 4 days in a row, takes it's toll on an already tired soul.

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