Cafe Leone

I gave you fair warning, so each word you read now brings you closer to my rant.

I need to receive Remicade infusions every month or so as part of the treatment I receive for my condition. Remicade acts as an immuno-suppressant.  Essentially, the theory is that my body has an over-reactive immune system that kicks in at the slightest provocation causing this nastiness to happen to me. Remicade will work to flatten my immune system and basically reboot it.

During this time, I am extremely prone to infection (because I don’t have much of an immune system), but have managed to side-step most of the illnesses running rampant at the Leone Estates.

So, here is the rant part: The logical conclusion of everything I said above it that I need to avoid people who are sick. IT IS NOT THE OTHER WAY AROUND! I am not contagious, you idiots.  So, if you are pretending to be interested in my health and I go off and explain my treatments, the first words out of your mouth should not be: “OH! Stay away from me, then! I don’t want to get sick again!” Then proceed to tell me about the poor cold you just recovered from!

I don’t have leprosy. It is my immune system that is broken…not yours.

I just had this conversation on the elevator with someone and I am angry that this person got off the elevator and I am stigmatized, at least in his mind, as having a contagious disease.

It is important for me that people use their brains.  I am not a smart person, but I do the best I can to stop and think before I speak.

Thank you for allowing me a chance to vent.  Now it is your turn:

Go ahead and rant about something, anything that pisses you off. You are safe here. No one reads this stuff anyway.

health | 11 Comments »

Over the last month, and on a couple of other occasions over the last year and a half, I have been struggling with an extremely painful condition, called pyoderma gangrenosum. As I have already said previously, DO NOT look this up without being forewarned that images are quite graphic (actually there is a picture of me in Google Images also..and that is of my face and that is the most hideous of all!).

During this time, I was essentially immobilized. Confined to bed, where pain was constant, not touched by Ibuprofen, Oxycodone, Percocets or Vicodin. The pain in my leg ranged from local wound pain, to general malaise to outright VIOLENT spasms where my entire leg felt as if it was set aflame. I had to sleep on my back, with my leg practically in a vertical position. This would help a little, except at some point, I needed to put my leg below my heart and the searing pain would begin again as any sign of healing was quickly negated by the curse of gravity.

I could handle the pain, somewhat, but managing the wound itself was an endlessly nasty endeavor that required a TON of dressings that need to be painfully changed a few times per day. Each dressing change lasting more than 20 minutes. On more than one occasion, my doctor wanted to admit me because the problem was only getting worse.

The other problem is having to subject my family to all this. The Baby Goats have seen me at my worst. I know that has caused a lot of stress for them and I have missed out on some big events over the last month.

In case you are missing it, I am using the past tense in my words above. I am on some insane drugs that are essentially trying to reboot my immune system and the wound is virtually healed. I AM OFFICIALLY FEELING MUCH BETTER! Who knows, I am even considering going for a (quick) jog tomorrow morning.

I am writing this post, not to make you sick to your stomach. I do that with my other posts.

During this extremely difficult time, the one constant ray of sunshine that beamed into my days and nights was your well wishes. On more than one occasion, I would receive a perfectly timed comment or email asking if I was OK. I simply want you all to know that those comments and check-ins meant the world to me. I wasn’t dying from this horrible condition, but I certainly wished for it and your words helped me more than you will ever know.

This condition is subsiding now. My leg has yet another scar on it that looks like I sat on a scalding hot radiator. I am being treated rather vigorously with heavy meds but this damned condition can flare up at any point again, in weeks, months or years. But as I sit here, reflecting on the last month, I quite simply need to thank all of you for your kind words and friendship. I am forever stunned at the relationships that can develop while blogging.

I admit to being very selfish. The posts I write are nothing more than a ploy; a ploy to get you to come back.  I write in order to be with you and I write in order to read your words.

Thank you, my friends.

blogging, health, uncategorized | 9 Comments »

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.

health, uncategorized | 18 Comments »