Wednesday, May 23, 2012

Our daily dose of pain

Sometimes the daily injection goes well and sometimes it does not.  Last night it did not.  Emily tried to grab the needle twice.  I have to assume it is the anxiety about the pain that makes her do this because no rational child would try to grab something they know is very sharp and would hurt their hand as much as any other part of their body.

In this video the patient talks about having adult on-set Stills, same thing as SOJIA except in an adult, and he cringes before each Kineret injection.  He says it hurts if he touches the injection site and even three hours after it will still hurt him without toughing it. 

Emily screamed in anger after the shot last night.  It was painfully loud (I'm holding her during this).  Then I think about the fact I have to travel for work for two months very soon and my husband will be the one.  His wonderful sister is giving a week of her vacation time to come out and help when I first go, and it's only for two months, but I already know what she will be screaming; "I want my mommy!" and that will be so loud it already hurts my heart.

We've talked to the doctor about this and we could eventually try a weekly infusion instead, but that would be time in the hospital once a week.  It sure wouldn't hurt as bad so we may go that road, but we have to wait until I get back from my travel and Emily has come down more on the steroid dose.  Then there is still a chance she may relapse because the IV medicine could take up to a week to start working.  Then there is also the fact that Kineret is supposedly the best there is out there for SOJIA especially.  Would we be risking her health only to improve her quality of life slightly?

I'll leave you with something I read last night because it seems to fit (although I am sure Emily would not think this trial very "light" and to me is feels heavy too).

2 Corinthians 4: 17 
For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory;

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