$ The cost of a chronic disease $

I can be honest and say we have good insurance that covers most of our medical costs.  The difficulty comes from the fact that unconventional things are what help JIA kids most.  We have Emily taking physical Therapy twice a week which she hates and insurance covers and swim therapy once a week which she loves and insurance doesn't cover.  We wanted to get a YMCA membership because they have an indoor pool, but since we choose to keep our children at home and out of day care we can't afford it and can't apply for the YMCA scholarship because both parents don't work. 

There is another JIA girl who I heard takes dance class six days a week to help keep the stiffness at bay.  Movement does help, but of course insurance only care if it's a medical condition.  So they will pay for a wheelchair if we want to just give up and let JIA win.  Since we don't just want to let JIA win we have sacrificed other things.  We were considering buying a second car when Emily started kindergarten, now we won't.  We'll be inconvenienced a bit and save the money we would pay on insurance, maintenance and a car payment so we can continue water therapy and buy food for Emily's new friend Pearl.

On top of the unconventional, but successful treatments, we have to pay to park each time we go to physical therapy or the doctor and then most of the appointments are at least two hours if not more which usually cuts into a meal so we either rush home and pop something in the microwave while hungry, irritable children growl or stop to get something to eat and reduce the stress load a bit.  That all costs extra money.  It's not something you think about. 

When Emily was in the hospital they fed her, but not us.  Sometimes I would just eat her leftovers because she wasn't eating much.  Most days, except on Saturday and Sunday, the Rhonald McDonald house would feed us, but when Emily was in the ICU I would have to leave her to get food.  I ran back and forth and lost weight not eating as much.  One or two days in the hospital is no big deal, but 57 and the meal bills add up.

We also have the co-pays for her medicines and then we have to pay for the alcohol wipes, syringes, gauze and band aides.  Emily doesn't like the feeling of the alcohol wipes so since it's already very traumatic we bought some gauze to dry her off before we give her the injection, but that's expensive and we may stop doing that and have to have her suck it up and deal with the wetness for a few seconds.  We hate doing that, but what can you do?  We don't go on family vacations, we hardly travel, my husband and I never go on dates any more and unless we're at the doctor appointment during a meal we never eat out.  We don't buy new movies or go to the movies, the last time my husband or myself bought new clothes was over a year ago. 

JIA has not only taken some of my daughter's mobility it has also taken our money.