2013 Off and Running

Two thousand thirteen is off and running.  We have been going to the hospital once a week for overnight infusions.  Not easy but we get through it.  I think both of us are looking forward to a break.  We have had a few medication switches to try and solve some relentless issues like coughing.  Nothing major, clear lungs, ect,.  But when something like that keeps happening we need to try and stop it.  They switched his blood pressure medication.  Didn't seem to help.  Maybe a little bit.  The cough comes at night mostly.  Then we switched a medication that protects his stomach from the steroids.  The doctor wanted to try one last time to try and go after his hoarse voice.  It didn't last long.  The medication gave him diarrhea.  Food wasn't even digesting.  Gross I know.  But stopped that.  It slowly resolved.  Still having some issue though.

You can tell right now he is bogged down with medications.  Rituxan and Orcencia, these back to back infusions make it difficult to determine if his JDM activity is doing well or not.  Labs came back to normal and have stayed that way.  Energy is ok.  Rash is ok.  Another factor is this time of year.  January through April is always a very active time for his disease for some reason.  They were concerned a few calcium deposits have gotten larger.  This time we measured. She took her pen, drew a line around it.  Gary thought that was great.  A doctor, drawing on him with an ink pen.  So we continue to wait and watch close.  It is a  finger tap sort of thing.  I am doing my best to keep him healthy, active, and normal.  Whatever that is.  Can't wait for a break from the hospital.