Enough Already

This is the boys the past couple of weeks. Their TRAPS has been flaring despite treatment. High fevers, swollen eyes, rashes, joint pain, stomach problems, ENT issues. The specialists that we have been seeing say this Enbrel the only medication, however, I do know a small percentage of people that have been to the NIH who have been told differently. What to do? I also started charting their symptoms in a calender so see if I can find a pattern so we can tell the difference between a true TRAPS event and other illnesses. Right now the boys are soooooo grumpy, I know that they don't feel well, but I have been feeling like we still need to have some normality in our lives. It has been years since we have seen a light at the end of the tunnel. It is funny because Tyler was recently on a basketball team with some of his friends. It was a great team that didn't win very often. After his last game he seemed down. I asked him what was wrong and he expressed frustration that he didn't win more. In one of those "mommy moments" I explained how grateful I was that he was not on a "winning team". He looked at me with shock that I wanted him to loose. I told him that if he was on a team that won all the time he wouldn't have worked so hard and learned so much, even though he felt like he was running all the time and not getting anywhere. Of course the scoreboard would agree with him, but I could see things the scoreboard couldn't keep track of. I guess in a way, I understand how he felt. I am tired of running all the time and seeming like the scoreboard isn't keeping up. It isn't that I don't have faith that something will give, I'm just exhausted in the meantime. I have grown dramatically in the past several years, as I'm sure my children have a well. It is just hard for me when I know there are answers out there, but I don't know how to get them