Ninth Circle, Antenora

I'm a little bit in love with Dr. Foster right now. I just had an excellent visit with him in Boston yesterday and I am so excited to be making progress! I hadn't seen Dr. Foster since starting my infusions and steroids so I really was anxious to hear what he thought about how I was doing.

Last time I was in for a visit, Dr. Foster was the picture of frustration. I was not responding to treatment and in fact, my eyes had gotten drastically worse. We tried giving me an emergency IV of steroids (to quickly calm down the inflammation) but it ended up not doing anything. It's pretty scary seeing your doctor bury his face in his hands after looking at you. You can't help but think that you must be the worst case he's ever seen or something. It didn't help that giant pictures of my tomato-red and generally horrible looking eyeballs were floating around on the huge computer monitor over Dr. Foster's shoulder as he did this. A reminder of how completely abnormal and well, diseased, my eyes looked. I promptly burst into tears.

The funny thing is, I knew exactly what Dr. Foster was going to say. I knew I was worse. I knew I would have to start taking prednisone daily, along with probably either methotrexate or cyclophosphamide (different immunosuppressants, since my current one wasn't working). I knew my eyes were very very inflamed. I guess it was just kind of unsettling to see my doctor look so upset about my particular case. I already had a rare disease, I didn't want to be further sorted into the “tough case” subset and unfortunately, that's exactly where I was.

But yesterday, Dr. Foster could not have looked more different. He was positively gleeful after looking me over. He declared that I was doing much better and responding so well after only a few months of treatment that even he was excited. I wanted to hug him, jump around the room, and possibly climb up on the exam chair and do a little dance in celebration. Luckily, I remembered social norms and settled for just smiling 'till my face hurt. Tough case to success story? I liked the sound of that. I flew out of Boston in a state of joy-induced delirium.

Science aside: Ever since this appointment, I have been having little fantasy-visions of my B cells getting chased down and destroyed while I stand by watching happily. One of the immunosuppressant medications I take is called rituximab. Rituximab goes after a protein called CD-20 and it is basically supposed to attack my B cells. B cells are cells of the immune system that are involved in making antibodies, among other things. These cells are supposed to be destroyed, fixed, or otherwise incapacitated if they act abnormal towards your own body. Since I am starting to get better with the addition of rituximab, this seems to suggest that something went wrong with this process and I have abnormal B cells running around, wreaking havoc. Of course, the immune system is really complicated and I am not a doctor and there is more to the story of my disease than just renegade B cells (you can read more about the “double hit hypothesis” here: http://www.oculist.net/downaton502/prof/ebook/duanes/pages/v5/v5c027.html). But for now, I'm going to imagine that hunting the little traitors down is the key to making me better and continue rooting for their destruction. Had they had souls, I'm sure Dante would have placed them in the second ring of the ninth circle of the Inferno - reserved for traitors to country. (My body = homeland for these guys therefore, to Antenora they go.)

But back to reality. Other good news from my Boston visit includes being given the green light to continue with my steroid taper. I've been dropping 5 mg each week and so I will officially be prednisone-free by the first week of December! 

Oh pemphigoid, I told you I'd kick your butt. Just you wait.

This post is dedicated to Dante Aligheri. Without whom I would not have known where exactly in the Inferno to place my misbehaving B cells so that divine justice could be properly enacted. I like to call this method of cheering myself up "Dante-vengeance."