I would Google that ONLY if you are brave. That condition, my friends, is what I have been battling for over a year and a half. I am currently in the midst of an excruciatingly painful time in my life. Due to this condition, I am almost unable to stand up and need a cane to walk If you would allow me a chance to explain it, perhaps it will explain the on again, off again, affair I am having with my blog.
About 18 months ago, I had a spot on my leg that would not heal. It was about the size of a nickel. I went to a dermatologist and was immediately diagnosed with a Brown Recluse Spider bite. I was treated with very painful injections once or twice per week. The wound gradually became bigger and grew to the size of a small saucer on my lower left shin. I had it biopsied and had to spray painful concoctions on it, but with little benefit. All the while, this thing grew bigger and the pain almost floored me. It was greater than the pain that comes from a wound. The pain was throughout my leg.
Eventually, it decreased in size and healed, leaving an ugly scar on my shin. I was able to get back on with my life and thought nothing much about it.
But then it happened again….in a different location on the same leg. This all but ruled out the possibility of a spider bite. It was now diagnosed as pyoderma gangrenosum. PG is a rare, painful condition where an ulcer develops usually on the legs. There is no known etiology and no known cure.
This new ulcer was located on the back of my thigh. This made walking almost impossible. I took a 6 week leave of absence from work this past October and laid flat on my back during most of that time. Taking time off from work is one thing, but there is no taking time off from being a dad. My family was somehow patient with me as I buried myself in the attic. But I still needed to function and be a part of their lives….even if with some difficulty.
This would eventually healed using some really heavy immuno-suppressant drugs. Now add a new scar to the back of my thigh.
Additionally, I have made severe dietary restrictions based on what one of my doctors suggested. That is fine, since I have lost 60 pounds…45 pounds now.
So, I went on with my life, feeling like a nightmare was over. Then last week came. I noticed a small bump in my leg and my heart raced as I thought about what was about to happen to me again. This time it was on the right leg, behind my thigh. One week later and I can barely get off my ass as the pain is already too great to handle. The drugs I need to take now include chemotherapy drugs in low doses. I doubt my hair will fall out, but I can tell you that my stomach is doing somersaults. I need to micro-manage the wound care too which includes a TON of tape and gauze and wincing in pain. I need to carefully take showers as the water is painful too.
As I type this, my leg is in incredible pain. I cannot stand and I can barely drive. It begins, again and there is nothing I can do about it.
Amidst all this pain, the world does not stop spinning for me. Work is presenting itself with many projects and deadlines that normally would excite me but are now just frustrating me. At home, I lay here knowing that I need to continue to be there for my father and mother as he deals with MUCH worse than mere pain in the leg. I need to be there for my family as we struggle with myriad crises; some of them serious. We are in the process of moving from the first floor to the second and bringing my parents from the second to the floor. This is a logistical nightmare which is quickly becoming impossible to manage.
I have not told many of you my battles with this blasted disease, because it is both hard to talk about and because it is humiliating and gross. But, I want to share with you what is happening in my life because you are as much my friends as are the people in my real world, In many cases, more so.
It is 2AM, my hands shake as I type in pain. I feel sick to my stomach and want to go into the basement and hack off my leg and I would if I knew it would solve this problem. But then I remember, that my 10 year old has been lying to us about his homework and now we need to spend all of Sunday trying to make up for the last two months of not doing it. I need to call a tree cutter to deal with the two trees that are precariously close to our bedroom window and I need to go to work to try to meet a deadline this week. All this while trying to forget my leg even exists right now.
Sorry to be so maudlin, but I am mad right now at the cards I have been dealt.
That sounds pretty unpleasant Dan, and the frequency it’s happening must be very worrying. Hope you recover from this bout swiftly.
I didn’t do any homework for around three years and it never did me any harm. Well, apart from gaining lackluster grades and ending up going to a bottom of the pile university to do a degree that I had no real interest in.
I wish i could go back in time and give the 13 year old a swift kick up the behind
Left by t'other Dan on February 3rd, 2008