I do this every day.

I do this every day.

Examine The Area for bumps, openness, bleeding, dryness, red/purple/black discoloration.
I’m 16. I cannot sit with my legs over the side of the bed, as the rush of blood causes tremendous pain. I miss the last three months of my junior year. It’s all because of a few small purple wounds on my lower legs. My first run of Prednisone, which is a miracle drug that masks the pain and symptoms but is not a cure. I do experience many of the side effects of large doses of Prednisone, but I suppose they’re more tolerable than the pain.

I miss the baseball season, Junior Prom, and my grades sink even though I tried to keep up.

* * * * * * * * * * * * * * * * * * * * * * * * * * *
I do this every day.

Determine if topical treatment is necessary.
I’m 19. Riding the bench for a Division III baseball team. But I’m in Cocoa, Florida, enjoying our annual spring break trip that includes ten games in seven days. The pain starts in my legs again. Heavy. Dull. Aching. Walking is hard, much less playing ball. A couple small purple wounds. My doctor sends me Prednisone via overnight shipping. A few months on it, and eventually it doesn’t hurt with every single step I take, walking from the furthest house on campus to my classes. Things get back to normal. In the deepest parts of my brain, I know my baseball days are done.

* * * * * * * * * * * * * * * * * * * * * * * * * * *
I do this every day.

If necessary, apply topical treatment.
I’m 25. On a trip to my brother’s grad school graduation, my parents notice me caring for a giant purple scab on my left leg. (Looking back, I have no idea how I let it get that bad.) When we return home, I see my doctor — who refers me to the wound care department of a rehab/therapy facility. On my first visit, the specialist takes a look at my left leg (the outside part, mid-shin-high), puts on his latex gloves and grabs some kind of tweezers. I ask, “Uh, what are you doing?” He calmly replies that the scab has to come off.

He clips and tugs gently, and shockingly, the removal does not hurt. (I have a Polaroid of this actual moment, but I will spare you the visual. Unless you want to see it. Post in the Comments below if you’d like me to send you the photo.) Underneath the crusty purple scab is a half-inch-deep layer of what looks like wet pink goosebumps. He places a non-adhesive bandage on The Area (as I will refer to it now and forever) and wraps it with cling-roll bandages, followed by tape to hold the bandages on.

I am to return three times a week for hot whirlpool treatment, which sounds cool but is limited to my left leg below the knee. This is to debride (remove any bacteria, dirt, etc.) The Area and hopefully enable healing.

For several years, this kind of treatment — and many others — had varying degrees of success and failure in trying to heal The Area. Real skin graft. Artifical skin graft. My own plasma, spun in a centrifuge and frozen.

Some of The Area heals, breaking it into separate segments. But then it gets angry again, the segments join together and become one big nasty deep ulcer, which is finally diagnosed, properly, as pyoderma gangrenosum. (Google it only if you dare, yucky photos abound.)

* * * * * * * * * * * * * * * * * * * * * * * * * * *
I do this every day.

Place bandage or gauze pad on The Area.
I’m somewhere between 25 and 30. (If you had all this in your head, you’d be fuzzy on dates too.)

A hacking winter cough leads to amoxicillin, which leads to a bad reaction, a fever, weakness and fatigue, and finally a hospital stay. The diagnosis is C. Difficile Colitis, seemingly brought on by the medication. While in the hospital, they test me and confirm that I also have Crohn’s colitis. And after trying a whirlpool treatment that had me literally screaming (you try putting your exposed nerve endings in swirling hot water), a surgical debridement is done. Because the pain of the surgery would be so great, they have to knock me out (and keep me going on morphine).

A few days later, I am quite possibly bending the metal bar on the side of my hospital bed as they attempt to remove the silver nitrate bandage that has protected The Area since the surgery. This is horror-movie-level pain. When I am finally released from the hospital, I am on 80mg of Prednisone a day (which will take about a year to slowly wean off of), as well as Oxycontin and a couple immunosuppressive drugs.

* * * * * * * * * * * * * * * * * * * * * * * * * * *
I do this every day.

Apply three long strips of tape that extend beyond bandage to adhere to leg.
I’m 31. I’ve met a woman who could be The One. She’s gorgeous, she’s fun, she’s smart, and she challenges me. And somehow, I have to share all this with her without scaring her off.

“Hey, so we’re really getting along well here, and I need to let you know that I have two rare and chronic diseases, and there’s a giant ugly hole in my leg. Do you want to get an appetizer?”

(The above is NOT how it went. I honestly don’t remember. I do know I had enough sense not to have that discussion on the first date or before a meal.)

Regardless, she had to know what she was getting into. And I later found out that at first, it was difficult for her to handle — because my health issues could become very important in our shared future. Happily, she realized that my awesomeness (and humility) was worth any health issue we had to deal with. (Note: We’ve been married for 8 years now.)

* * * * * * * * * * * * * * * * * * * * * * * * * * *
I do this every day.

Carefully pull compression sock over foot and then up leg to knee.
I’m 36. I’m tightly holding my wife’s hand in the operating room as our beautiful girls enter the world. It is the most surreal, wonderful, exhilarating experience of my life. And in the middle of it all, I wonder if these innocent little angels will have to deal with health issues like mine. I hope they don’t get any of my bad genes, only the good ones. Sadly, parents are pretty helpless in that department.

The girls were preemies, and both had 3-week NICU stays. You can read that story here, but suffice it to say that after a terrifying ordeal, the girls are healthy and amazing. I just want them to stay that way forever and ever. Is that too much to ask?

* * * * * * * * * * * * * * * * * * * * * * * * * * *
I do this every day.

Go about day as if everything is normal.
I’m 41 as I write this. That number blows me away. I vividly remember thinking “wow, I’ll be 27 in the year 2000.” Well, here we are, 14 years after THAT. I’ve got a nice bald spot going on top of my head, plus some serious gray/silver happening in the remnants of my once-semi-glorious head of hair. And that’s no big deal.

My health is under control, thanks mostly to my Remicade infusions every six weeks or so. It’s no big deal, I get an IV infusion and work on my laptop during the four-hour treatment. If that’s what’s keeping away new wounds or Crohn’s flares, then it’s a tiny price to pay.

But every day, I go through the steps written here in bold type. And let’s be clear about something — there are many people who have it worse than me. I know this, and have reminded myself of this fact for years. There are pyoderma patients with wounds that never heal, or break out in much worse places than the lower leg. And there are Crohn’s and IBD patients who require surgeries and removal of intestines and all kinds of other life-changing procedures.

I didn’t write this for pity. I wrote it I was pushed by a buddy (thanks, Matthew) who believes you’re either a creator or a consumer — and I wanted to focus on being that first one for a bit.

Above all, I wanted to share a part of my daily routine that very few people know about, and even fewer can relate to. Maybe I wanted to persuade the 17 of you who read this to be grateful if you have your health. It is truly a gift to be cherished.  And to remember that there is always someone who has it worse than you.

* * * * * * * * * * * * * * * * * * * * * * * * * * *
I do this every day.

12 thoughts on “I do this every day.

  1. Thanks for reading, Cam! Honestly, I know we all have stuff to deal with. My stuff is worse than some, but not as bad as others. It helps me keep things in perspective and remember what’s important. Family, friends, health (when it works). :)

  2. I love you everyday. For the caring and supportive big brother you have been to Jonathan and I, for the courage and resilience with which you have faced your terrible pain and suffering, and for the inspiring and endlessly-devoted husband and father you are.

  3. I’m so glad to have inspired this, if even only tangentially. I live with lingering nerve damage in my dominant (drawing and painting) hand and while there are others who have it much worse off, we all have our own little personal hells we must learn to live with. Kudos to you for striving to be a creator and not a consumer.

    • That really did resonate with me, Matt, as somebody who does love to “consume” but should focus much more on creating. Hopefully, this year will be one in which I make it a priority to do more writing for loftier purposes than work. ;)

  4. Thank you for sharing your story and being such an inspiration. In a year when I have lost several friends from cancer, I am acutely aware of how lucky I am I have my health and how quickly that could change. I only hope that, should I be diagnosed with a chronic condition, I would handle it as gracdefully as you have portrayed here. Thanks again.

    • And thank *you* for your comment, Cara. I really believe in the importance of remembering that “it could be worse” — and that helps me remain grateful for what I have. Every day is a gift. :)

  5. Harley, you’re an amazing person. You’ve been through more than 10 people put together, but you manage to keep a wonderful sense of humor. And sorry, but I was completely oblivious to your issues while we were in FL with the baseball team. Clearly you’ve been dealing with some potentially serious issues, but luckily your docs seem to have everything under control. I think you are truly a role model.

    • Wow, thanks for the kind words, Chris! I’ve always said that one of the best decisions I ever made was going to Ursinus — where I “found myself,” learned a ton of valuable life lessons, and made lifelong friends (here’s lookin’ at you, kid!). And don’t sweat it about Florida. It was a pretty weird thing to go through, and I remember you and the guys being pretty supportive.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s