See Spot…and Run!

***WARNING: Graphic Medical Content

As many of you already know, I have battled a rare, painful condition called Pyoderma Gangrenosum for a few years now.  Please do not Google Image that without fair warning; It is ugly and gross. This disease is hard to explain to people as they inevitably think it is “just a skin problem.” In fact, explaining how debilitating this condition is to the insurance company has been a challenge. They simply do not get how immobilizing this disease can be.

At its simplest level, PG is an ulcerative condition of the skin of unknown origin. It is sometimes associated with other systemic diseases. Whatever the case, it sucks and it hurts and it is very difficult to care for, let alone treat.

I have been managing the disease quite successfully over the last 2 years with a drug called Remicade. This is a very intense treatment that essentially suppresses my immune system (an over-eager immune system is thought to be the cause of PG). I have been going for treatments every six weeks to Tufts New England Medical Center. Basically, I am getting the drug delivered into my system via an IV infusion. It takes a few hours to get it into me. Other than a bottomed-out immune system and some lethargy, the immediate side effects are minimal.

My life has been moving along fine with only occasional flareups that seem to suppress relatively quickly.

Well, that changed 48 hours ago. I am now in the throes of an intense flareup that is causing a lot of agony as well as anguish. It is in a very awkward spot which makes it almost impossible for me to bend my body. I hate this. I definitely did not need to deal with this now…especially the day after Christmas. I still have a bike to assemble and we are all still tripping on remnants of yesterday. No matter how great the pain is, I still need to be a member of the family. My 8 year old has already asked me to play Blokus OR Stare OR Sequence OR Pictureka OR Zingo OR Racko OR…well, you get the message.

There are reasons to think that this may not evolve into the HUGE ulcerations I had on each leg, I cannot help but worry. I don’t even know what the point of this post is, so I am just going to end it. Thanks for listening.