“After great pain, a formal feeling comes. The Nerves sit ceremonious, like tombs.”

Posted by danleone on October 24th, 2011 filed in pyoderma gangrenosum/health

(Yet another, somewhat graphic post about PG)
Three AM is always dark. Regardless of the season and as long as you live near my latitude, It escapes any of the Earth’s rotations and precessions that tend to shift sunrise.Three AM is always dark.
Three AM is also the time my first alarm sounds. I don’t need to be fully alert for this one though. I simply roll over and grab my glass of water and two of seven pill bottles. Every six hours, four times in every day, this same alarm sounds and I reach for the same two pill bottles. I then allow myself another hour of sleep before the second alarm sounds. This is the you-really-need-to-get-out-of-bed-stat alarm.
By four, the pain meds have kicked in and I can now allow my legs to drop below my heart. Of everything that I have to do in the course of the day, this, the simple act of going vertical, is the one I hate the most. It is during this transition that I am reminded that not only do I have PG, but that it is trying to do the best it can to knock me on my ass; often with literal success. My legs will touch the floor and I may even begin standing up before the blood rushes to my wounds firing off one of the most painful events I have ever felt. Gravity-induced, searing pain that radiates beyond the borders of the wounds.
It is at this time that I have literally dropped to my knees and crawled to the bathroom. Luckily, I took those pills; a surprising number of them, just to deal with this phase of my day.
Transitioning to the next phase is the only thing that can dull the previous quality of pain and replace it with its own pain of even greater severity. Wound care. Gross, but there is no way to discuss living with PG without discussing wound care. Every day of a PG flare will include some form of wound care. There are other, more socially awkward reasons to start the day with a fresh dressing change. Despite wearing this condition on my sleeve, I will spare you those more awkward details.
I use trauma shears, an artifact of my EMT days and of my former self, to tear through the dressings. Now, let the fun begin! This is the part I hate the most…as much as I hate the previous parts the most. The one I fear, anticipate and have never been able to effectively brace myself for. A daily ritual that brings a pain to me like nothing ever experienced before. Despite what some of the nurses at the hospital believe, there is no way to clench your jaw and one-and-two-and three and peel! Or is it one-and-two-and-peel? This isn’t a band-aid, folks. I didn’t just skin my knee.
It can take a full half hour for me to take the dressings off. Everyday I consider a different approach, hoping that one will allow me an opportunity to start the day without tears. So far, I have found nothing. The flip-side of wound management is the realization that we walk a very fine line between keeping the wound clean with frequent changes and aggravating the condition with any activity at all. As all PG sufferers know all too well, PG wants to be worse and is looking for any excuse. Debriding, biopsying, aggressive topical applications, etc can all make a PG lesion worse. Even the “trauma” of changing the dressing can exacerbate it.
Now, with the dressings off, you would figure that it is a simple matter of getting into the shower and getting ready for the day. Once again, there are no straight lines with this disease. The water pressure alone from a shower head can feel like shards of glass fired from a high pressure rifle against a PG wound. Even the water itself touching it can feel like it is made of flames. But I do what I can. I haven’t figured this part out. I have to get in the water to get the rest of me clean but I have to do what I can to keep the water and soap away from the wound. Once again, another pain of a differing quality than the other pains already experienced and can make me drop to my knees.  Just ask my eight year old daughter, who does not remember her dad being healthy what does daddy sound like when he is in the shower. She will put on an hysterical show combining “ow! ow! ow! owwwww!”  with some choice f-bombs. She does not know daddy taking a simple pain-free shower!
I have tried all sorts of variants of getting myself clean and wound care. So far, I feel the best approach is to keep those activities as separate as possible, but this is not always possible.
Let’s not forget that all this INCLUDES the fact that I have taken a frightening number of pain pills!
Getting everything wrapped back up is not without its challenges not the least of which are the usual acrobatics that need to be performed in order to get my body into the right position to apply dressings. But once all put together, I have added yet another dimension to the pain. Raw, tender, wounds now have layers of dressings and compression wraps designed to take me, with some dignity, through the remainder of my day. The squeezing and torsioning and the subsequent pain is the end result. At this point, there is little I can do to change how I will feel for the rest of the day. This process that has begun at three is over, for now; before many people even wake up.
I am sharing this experience less as a pity party for me but more as a way to acknowledge the challenges that all of us with PG face whenever we are in the throes of a flare-up. I write this not for those who won’t or cannot understand this condition. I write this for all of those suffering from it. I too know what the definition of pain is. I too know that a “flare-up” is not some overnight process. I too know how hard it is to describe this condition to the people that sincerely want to know as well as those just asking out of kindness. Nothing is easy with auto-immune diseases. There are no straight lines and there are no easy answers. We live in a world filled with trial-and-errors. We live in a world filled with solutions that can take months or even years to manifest positvely or negatively. We live in a world where we are the authority, we are own advocates and we know what is right. All the experts can do is suggest. This assumes that these experts even exist. Meanwhile, the pain remains the same.
Go ahead. Ask me how my morning went.
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8 Responses to ““After great pain, a formal feeling comes. The Nerves sit ceremonious, like tombs.””

  1. Harley Says:
    October 24th, 2011 at 12:33 pm

    Very accurate and well-written. I think even those lucky enough to never deal with PG would “feel” this painful experience.

    I’m sure you’ve tried it, but I did have limited success during dressing removal by adding wound wash/saline as I took them off.

    Certainly hope you and the docs can get this flare under control and resume some kind of “normalcy.” (Even though we know that normalcy is pretty much a goner.)

    Hang in there and please keep writing.

  2. bronsont Says:
    October 24th, 2011 at 1:23 pm

    Friend, you are in my thoughts and prayers.

  3. Clio Says:
    October 24th, 2011 at 3:46 pm

    Oh Dan.
    This sounds like a nightmare.
    I wish there was something useful to say, but there isn’t.
    Just that I feel for you and your family and I hope one day there is some sort of cure or at least better treatments for PG.

  4. Vicki Says:
    October 24th, 2011 at 9:36 pm

    Dan you are awesome!PG sure does suck,the suffering and pain 24hrs.a day.

  5. Harriet Barnes Says:
    October 25th, 2011 at 10:51 am

    Hello Dan,

    What a courageous post.I found you (figuratively) many moons ago on Facebook on the PG support page, and have bookmarked your blog. I am also a Paramedic (being paid, but not actively working) that has suffered from PG for 10+ years now. I applaud your ability to describe, document and defy this horrible disease. It is hard to tell people how many aspects of one’s life are destroyed with this affliction, you sir..well…you make us all proud. Stay strong, stay verbal and we’re all thinking of you.

    Cheers.

  6. danleone Says:
    October 25th, 2011 at 12:49 pm

    Harriet…thank you so much for your sweet words. You are right, it does indeed take courage to post an article on how pervasive this disease is (whether I do that it effectively or not, remains to be seen). Just think of how some of the people you know begin to roll their eyes and search for an exit the second you say words like “dressings” or “wound care” or whatever. I understand that, but in the same breath it is so frustrating to be held to an unrealistic expectation that our lives are not filled with body fluids, pain, wound care, etc. Yes, it is “gross” but is just part of the human condition. People have their own issues, from menses, to diarrhea, to flatulence…but we don’t judge that. I literally have had people say “Ok, Ok, stop! I don’t need to know more.” I have had others say “Oh boy, you take percocets every day? I can’t even take an aspirin when I have a headache!” Oh, OK. I enjoy nothing more than popping pills unnecessarily. Thanks for the reminder. lol. I know you understand. More importantly, I am so grateful that you took the time to comment. I am happy that we are able to share in the craziness that is our lives now. Thank you and please take care!

  7. danleone Says:
    October 25th, 2011 at 12:51 pm

    …and Vicki…you too are awesome! Thank you!

  8. danleone Says:
    October 25th, 2011 at 6:46 pm

    Korie…it is so good to hear from you! Thank you. I hope you and your new family are doing well!

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