Monday, September 21, 2009

They said this would get easier....

We were told when we started the Kineret injections that it would get easier. Somehow he was supposed to get used to it and it would just become routine. Maybe it will at some point, but I can tell you three and a half weeks is not that point. It was getting easier for me to give the injections and then his fighting and struggling got worse. There was an incident where he got his arm free from CK and grabbed at the syringe. I pulled it away and he wasn't hurt, but he only got about 3/4 of his dose. I was not about to stick him again. There was also another evening where he was moving around so much that I had to stop, re swab an area, and pick a new site for injecting as CK couldn't get an adequate hold on him and still leave enough of the original target open for me to make an injection. It's not CK's fault at all...the kid is strong. I only tried holding him once and it was a major effort that was marginally successful at best. The stress of this really got to me last week and I broke down post-injection and cried off in my room where Robby couldn't see me. I was considering whether or not we should switch to methotrexate so we would only have to do this once per week. Then I felt like a crushing failure because I even considered that option when I've read the black box warnings and all we were talking about here was my own inability to suck it up. I cried and I finally got my wits about me enough to pray about it, "God, please give me what I need to take care of my son. Whether it's within me or somewhere else, please help me find what I need to do this."

The answer didn't come to me until the next morning. I decided to check into my health insurance coverage for home health nursing care. It turns out I have pretty good coverage for this. I am in the process now of getting authorization and seeing if I can get setup with a nurse to come out in the evenings and give the injections. I realize we will still need to be involved in the process and help with holding, etc.--but the idea of not going it alone feels comforting. It will be a relief to have some help until he gets old enough to understand and cooperate a little more.

I also learned last week that we were approved for coverage through the Ohio Health Department's Bureau for Children with Medical Handicaps. We were on the diagnostic program, but that is only six months and was set to run out on the 19th. We are now on the treatment program and will have to reapply for renewal every twelve months. This coverage picks up what the health insurance doesn't and means no more co pays for doctor's visits or prescriptions and no more bills for the 20% of labs and other procedures my insurance doesn't cover. I have incredibly generous health insurance benefits, but those little bits add up when dealing with a condition like JRA. I will take whatever help I can get. I also feel a little more relieved because it means we are in a better position to continue Robby's treatments if I should lose my job or something similar. Relief, relief, relief.

If you are a JRA parent, please make sure you check into these types of resources. If you aren't sure what is available where you live, reach out to your local chapter of the Arthritis Foundation and they will help you. Our local chapter is a great resource. I actually decided to start doing volunteer work with them to help me overcome some of the helplessness I was feeling in dealing with this disease. My first event was called Wine and Dine which took place on September 3rd. It was a great wine tasting event with food from local restaurants and a silent auction. I worked an auction table and I was really happy with the bids I was able to secure for the items. Here in a couple of weeks, I will attend a kick off meeting for December's Jingle Bell Run. I plan to be a team captain for the event. My goal is to recruit 20 team members and raise $2000 as a team. We'll see how we do. The volunteer work helps me to feel like I am actually doing something to help my son and other kids with JRA. I am also hoping to eventually meet some JRA parents as I think that would be great for me as well. Every time I hear about or see a teen with JRA who is living a fairly normal life, it makes it that much easier for me to hold onto some hope for my little guy. At the end of the day, hope is the best medicine.

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