Purgatory

Posted by danleone on September 2nd, 2012 filed in Chronic Illness, pyoderma gangrenosum/health

It has been over fourteen months since my current PG flare flared. Fourteen months resulting in me facing some harsh realities. I received my handicap parking sticker. I was prescribed a wheelchair. I had to take another leave of absence from work and yet another hospital stay. The profound pain last October through December meant I slept at the kitchen table. It meant that I slept face down in my arms at the effing kitchen table! FOR MONTHS! I could not lie down. Even while at the hospital, I had my leg up in slings suspended from the ceiling with the only point of contact with my legs were the thin straps around my heels. You get it now? I was in the proverbial “bad place.”

Over the last couple of months, the wounds have subsided. My wound care doc does not even know what to do with me. At this point, I am good to go. The smart people give me all the advice. Just don’t overdo it. Don’t start running marathons, swimming laps or playing soccer. Walk…but not too much. Shower, but be careful what the water touches. Forget soap! Sit down but keep your legs up. Move them often but don’t smash them against one my Baby Goats. Work out in the yard, but make sure insects don’t bite you. Sure, go ahead and keep your legs out in shorts but don’t get sun on them and don’t scare kids at the mall with full length scars on my lower legs and thighs. All sorts of advice. All of it bullshit. All of it made up crap because no one knows anything about this disease.
But it doesn’t matter today. My wounds are somewhat closed. There is the smallest dot of a wound that you wouldn’t even notice. The pain is random. Some days it gets intense and I find myself reaching for the morphine and neurontin and oxycodone and anything else I can chew on. For the most part, though, all PG sufferers should be as lucky as I am today. I get messages from people all the time. “Dan, I am glad you are feeling better.” “Dan, let’s hope you are out of the woods now.” All of which I am happy to receive. The reality though is I can’t say that I am feeling better.
Herein lies the problem…it is precisely this limbo stage that rattles my nerves. I feel as if I am peering over the edge of a cliff; the slightest breeze can send me flying over the edge. This is the stage that wreaks havoc with my emotions, makes me shaky and chips away at any coping mechanisms I may have developed.
When in a full-on flare, I am in survival mode. My body and my mind are ramped up in a virtual circling of the wagons. My attention is 100% devoted to dealing with the flare. Of course it is stressful and of course that stress alone will take a toll on my health, but at least it is a stress that I compare to the feeling of jumping out of a plane with a parachute. It is akin to an adrenaline rush as my body focuses on putting out the fire.
Now, the flame has been reduced to an ember. The binary fight or flight response has been replaced by a constant hum of pain, fear and threats. Obviously, I am grateful. But I do not kid myself that I am truly “feeling better.”
Thank you for listening.

 

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6 Responses to “Purgatory”

  1. jodi Says:

    i know nothing i can say can really do anything to make you better,, or even ease your pain.. so let me just say i love you..

  2. Dorothy Carey Says:

    Hey Danny, can’t even imagine, what your going through, and I am truley sorry. Hard to believe, that something like this, has no cure. I wish I could say or do something to make it all go away. Just know that I am thinking of you, and wish you endless strenght, your friend, Dorothy.

  3. Kathy Says:

    Dan, I had no idea it was this bad. I haven’t been here in a while, and for that I apologize. I can’t even fathom what you are going through. If I could send you strength, and some sort of strega magic, I would…unfortunately all I can send is a virtual hug. Keep fighting.

  4. Oliver Fennell Says:

    If anyone who has had PG can call themselves “fortunate”, it’s me. My experience paled in comparison to yours and then even I had my down days/weeks. When I read about the likes of you and Lauren, I feel somewhat ashamed for ever having felt sorry for myself.

  5. David Sellers Says:

    I remember those emotions, or lack thereof (especially when being in survival mode) all to well. I hope your doctors continue to get things under control, and don’t forget you have a community surrounding you to support you!

  6. Marie Says:

    I’ve just recently been initiated into the world of PG, having it misdiagnosed (along with the UC that was misdiagnosed for over 20 years) and ended up with it debrided twice. I’m thankful they discovered what it was before they continued to debride it. I’ve heard such horror stories that I now consider myself lucky. My PG is only in the early stages, I’ve got a a long way to go. Greatly appreciate your story on here. More will learn of your journey and how to help others.

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