Here We Go Again...by Parker

So these last couples of weeks haven’t exactly been the greatest. My arthritis has been at war with my body. I have started getting flares again and that’s pretty weird considering how I was feeling before this flare. Things were really good, I was making it to school almost every day and I wasn’t even using my wheelchair.

But then, all of the sudden, it was like a bomb got set off in my body and that bomb hurt. First it was my lower back, shoulders, and neck that started hurting; so I switched to a rolling backpack. The next thing I knew was my ankles and feet were being attacked. If you look at the picture to the left and look at the red circle, you would probably guess that bump is my ankle. Guess what, it’s not.  That is actually the bone in the arch of my foot trying to push out. This became a problem because I’ve been wearing braces since the surgery.  When I walk, that bone hits the hard plastic and very badly hurts.

In addition to all this, I started having daily fevers again. Now I know that fevers are a symptom of systemic JA but I take a drug called Rilonacept and that drug is supposed to do 2 major things for me. Those 2 things are to keep my pain and swelling at bay and to suppress fevers. So when all this stuff started happening, we were pretty concerned.   

Then, another pretty weird thing happened. There are 2 joints on my body that don’t swell too bad, and those are my elbows and knees. And guess what, my knee got huge this week. Just look at the picture to the right. I mean really, if I didn’t know any better I’d think that was a thigh. The next day I woke up and my knee was still pretty huge.  We called my doctor and she said to go to my orthopedic surgeon to see if he would drain it. So we went to go see my surgeon and he wanted to take some x-rays of the knee before the appointment.  Since  we were there, he wanted to also get some x-rays of my feet and ankles. Well by the time we got up to his office and ready to see him, my knee had gone back down quite a bit. But he still wanted to look at my surgical site x-rays, especially my feet x-rays. And this is where everything went down hill.

If you look at the x-ray to the left, in the red circle you can see what my foot looks like with the cadaver bone fusing with my bone. And it looks pretty good. But if you look at the x-ray to the right, in the red circle you can see where the cadaver bone was located. And well, it’s not there, it’s gone. It was basically rejected by my body and was completely absorbed.

Now my bone has a gap where the surgeon had severed it during the surgery.  And all this time it has felt like the bone is trying to escape my body by pushing out the side of my foot because it is actually pushing out and my arch is completely collapsed again.  As you can imagine, we decided that it’s time to switch to a new drug called Ilaris, as soon as insurance approves it.

So you may be asking, what does this mean? Well, it basically means that the surgery didn’t work in my left foot. And on November 18^th 2015, I go back into surgery but this time to permanently fuse my foot. This was a lot for me to take in and I’m doing the best I can to stay positive. So, I want all of you to remember that you’re never fully dressed without a smile.