To Read Update:
There are 100's of autoimmune diseases like this & Lupus, Systemic, etc that are under this "Umbrella" covering, --- they can Overlap each other & do make it hard to get a Definate Diagnosis & treatment plan - as each child responds differently to each medicine,..... some much better than others. The Problem is - that many of the kids like Bailey, "LOOK/SEEM" as if there is NO PROBLEMS at all! You cant see much from the outside, especially if you dont know what to look for,.... and WE cant see what is going on - on the inside of her Body, organs, inflamation, etc,..... So this disease is almost invisible & therefore sometimes makes it harder to deal with,... than the obvious diseases or disabilities that some have. Some children are even bullied or told that they are faking being exausted, or that they are lying about their body hurting and can't run, walk, stretch, etc..... anymore that day. Some even hurt and are upset (especially girls as they get older, because they cant Brush their hair as well, because of their hands, arms, shoulders, back, neck, etc.... getting stiff & sore) - As we have recently discovered with Bailey! (Thats another story! - But after fighting with her to brush her tangles out of her long hair - especially in the back,... it hit me,... that maybe she CAN'T!) Thats why she did get her recent Haircut & Donated it to "Locks of Love" for another child to have! She seems to have a better attitude allready this week (most of the time,....) so maybe this was one less thing for her to have to struggle with! Will try to update better and sooner as before, .... this has just been a busy & trying time this year!