All Day, Every Day


OK, so I mentioned earlier that Marty thinks I’m obsessed with juvenile arthritis.  Maybe he’s right.  I have this blog, my twitter account (JA_mom), my facebook JA friends group (under my real name), and lots of facebook friends who are either JA parents or teens with JA.  Most (if not all) of my twitter followers are either patients, parents, or medical professionals dealing with arthritis or an immune system disorder of some sort, and the people I follow pretty much fall in those same groups.

I was talking with Bella this morning, and realized that I’m not allowed to forget.  Every day, the first thing I do is make sure Marty takes his pain medicine.  Every time I enter a parking lot I have to think about whether he needs to use the handicap parking.  Every time I watch him run I look to see if I can detect a limp.  Every time I see him put weight on his hands I notice he uses a closed fist, rather than put his weight on his palm like most people.  Every time I look at my calendar I see doctor appointments or a reminder to renew a prescription.   Every time I think about my budget I have to allow money for co-pays, lost income from missing work, and gas to drive to the doctor.  Every time I plan an activity I have to consider what the physical toll will be on Marty.  Every time I review my timesheet at work there are days that I missed part or all of the day because of doctor appointments.

Truth be told, I’d bet he thinks about it more than he would like to admit.  He wakes up stiff in the morning.  He has to take medicine twice a day and get an injection three times a week.  His feet hurt when he gets tired.  His medicine makes his eyes sensitive to sunlight.  He has to use more sunscreen than his sister because his medicine makes him burn more easily. He knows that if he plays too hard or walks too much he will hurt the next day.  He gets fatigued easily. He has bruises from side effects of his medication.  He gets nauseous from his weekly chemotherapy injection.  He is shorter than all his friends because he hasn’t grown since this evil disease invaded his body.  He has to be vigilant about germs and infection because his medicine suppresses his immune system.

Then there’s Bella.  She has to help him out when I’m at work and he hurts too much to get his own snack or medicine.  She mixes his Enbrel and gives him most of his injections.  She tags along to doctor appointments if she isn’t in school.  She lets him sleep with her if he’s afraid he will wake up unable to move.  She picks up the slack when he can’t do his chores.  She misses out on lots of fun because he gets too tired and we have to go home.  She gets questions from kids at school because her older brother is short and sometimes walks funny.  She walks beside him when he uses the riding shopping cart at the grocery store and sometimes explains that yes, he really does need the cart and yes, kids get arthritis.  She feels left out when people talk about JA kids and their parents.

Is it any wonder I seem obsessed?  This disgusting illness won’t leave me alone.

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About juvenilearthritis

A single mom raising a son with juvenile arthritis and a daughter with a big heart.
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One Response to All Day, Every Day

  1. Just wanna admit that this is extremely helpful, Thanks for taking your time to write this.

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