My words to describe myself now include “I used to be” and “I remember” and “before PG I was.”  I USED to be skinny or at least my weight USED to be completely in my control. I USED to run or at least my random runs USED to be solely guided by my will power and determination. I USED to have a positive outlook in life or at least I USED to be able to kick myself if I fell into negative thinking.  In my best Gene Simmons voice: “Before PG, I used to be….me”

I am NOT the disease. But it has become a part of me.  I cannot ignore it. There is no respite. There are no moments that I forget it is there. I am sorry that I can’t simply forget the pain when I am spending time with my kids. In fact, it is when I am with them that I most reminded of this condition.

I fear the night. When everyone else is sound asleep and my brain wants to join them, my body won’t let it. I am viscerally afraid to shut my eyes because that is when I might accidentally stretch or bump my leg and I wake up in pain again.  I am afraid to lie down because when I wake up for a midnight pee (by way of a midnight raid of the fridge), my leg drops below my heart and is set on fire. NO PAIN KILLER has ever made that pain easier. I fear the morning. In the morning, it is time to pretend again. Time to play house. Time to play daddy. Time to play coworker. Time to play nice when all I want to do is to show people what I am dealing with and say f*ck you!

Open house at Boston Tango Academy (I admit that is weird) with free lessons coming up…I can’t go. Social event with work a couple of night ago…I didn’t go.  My son earning his stripe in karate…I didn’t see it. Soccer practice…I didn’t go.  A year’s membership to the Brattle Theater and I have not gone once to see a movie. School-Parent events at the kids’ school and I do not attend. Family apple picking canceled. Weekends on Cape Cod…I have not been once this summer. Sneaking my family into the neighbor’s pool…not once. Replace the broken disposal…called my brother in law.  A year’s membership to the gym…I went 3 times.  Smelly yoga…5 times.  Mowed the lawn…not once this year. Planted a garden…nope.  Made wine…no.

Pyoderma Gangrenosum may not define me, but it certainly has changed who I am.

Go ahead and ask me that question. When I get to work tomorrow, I am sure I will be asked that at least 10 times. In nearly all of the cases I will do whatever I can to sidestep it and answer with a noncommittal “great…how about yours?” With the attention safely off me, we are then left to discuss the entire weekend from their perspective. Let’s see…it probably goes something like this. “Well, on Saturday I took the kids to soccer, baseball, swimming, tennis, etc. On Sunday, we all worked out in the yard. Boy, my grass goes fast. My back is stiff. I guess I am not as young as I used to be” I smile while silently begging for a still back.

But living with Pyoderma Gangrenosum (warning: GRAPHIC IMAGES) changes everything. Here is a rundown of my weekend. It is actually a rundown of my entire week…and to complete the melodrama, it actually has been the status quo for months.

Friday night, I slept on the couch. I slept in a seated position with my leg resting on the coffee table. The word sleep is really ironic in this context as what I did had very little to do with sleep. I sat in that position, with my body spasming in pain. Wrapped around my lower left leg are three 8X10 surgical dressings and approximately 10 feet of cloth tape all wrapped in a blue underpad. I keep a towel on the floor as none of these items can stop my wounds from soaking through the dressings.

During the night, when I drop my leg to the ground for the first time in hours, it feels like someone has taken a gallon of gasoline, poured it on my leg and set a match to it. The blood that flows back into the leg feels as if it were made of acid or microscopic shards of molten glass. During this blast of pain, I cannot even move from my position and can’t even consider walking for the next 10 minutes or so as the pain burns off (and if I were blind, I would say “literally burn off” because that is precisely the experience). My family has witnessed me stuck in this position so many times. Imagine having to explain to a 7 year old why daddy is crying and won’t get off the floor.

If the nights are tortuous, you would think that morning would bring relief. Wrong. Morning just brings more complications and pain. I have to undress my leg and no matter which of the fancy dressings I use, I spend at least 30 minutes writhing in pain because something will inevitably stick to my leg. I then hop in the shower where there is still no relief. Shower time is as unrewarding and downright frightful as bedtime. The moments we all take for granted; moments where for a brief few minutes or hours we can escape from the world, are moments I fear. These are moments where I am in my head and in my pain. I am cursing the fickle gods, the stars, the fates, my genetics, my diet for conspiring against me.

Redressing the leg is a whole new set of complications and logistical hurdles. I almost always require more hands than I have. It will require prepping the dressing with whatever concoctions the doctors and my own research are willing to try. If I am going to work that morning and know that I will not have access to my wound care equipment, then I have to be VERY careful to put myself together because it has to last the entire day. By dressing my wound so tightly I know in my heart that I am actually making everything worse. I know the dressings will compress, shift, torque on my wound and will cause excruciating pain. I know that by the end of the day, it will physically have changed the landscape of my leg. But I have no choice.

But whether I sleep or not is irrelevant. My Baby Goats need to go to soccer, need to go to the beach, need to play. While they do this, their dad is left home…still on the couch. “Daddy is sorry kids, mommy will take pictures and send them to me of your game. I think I am slowly healing and will be able to take you to karate next month.” This has been going on for 10 months now with no break. I have had this disease for SIX YEARS!