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.

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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.

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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.)

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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.)

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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.

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I do this every day.

Daddy Diary: April 29, 2009

–Slept a little late – working from home today. Called to check in on the girls…

9AM UPDATES:
–Norah = Chris at the front desk complimented her name; doing fine, had a good night; weight at 4 lbs., 7 ounces; trying to wean off Fentanyl, but it’s slow going
–Alexandra = drank 20 out of 38 (ounces, ccs, milliliters?) of her 8AM bottle; had a really good night, gained a little weight up to 4 lbs., 5.1 oz.; no new orders

Did work all morning, then left for Remicade treatment just before 1PM. Got lost – 121 changed off-ramps due to construction. It’s always tough to type/work with one hand (the other with an IV), but I manage.

2PM UPDATES:
Norah = good day, but spitting up after each feeding.
Alexandra = a couple “spitties” also, but doing really well

Drove home, fought insanely bad traffic on Main Street/423. [DRIVING TIP: When going through The Colony or Little Elm, AVOID MAIN STREET/423 coming north from 121 AT ALL COSTS.]

Shannon made dinner (thanks babe, it was great!) and we headed to see the girls.

6PM NORAH VISIT: Spit up a little bit when she sneezed in mid-feeding (via nose tube); otherwise gorgeous. Shannon got to change her diaper.
8PM ALEXANDRA VISIT: I got to change her diaper – and it was poopy! Shannon then bottle-fed her, and she did OK, but then switched to tube feeding. I got to hold her for a while too. She smelled like popcorn – Shannon reminded me that that was the formula.

Drove home, and here we are. A couple more crazy busy days ahead – going into the office, NICU visits, still trying to unpack a box or two after the move.

[COMPLIMENT SIDEBAR: Big ups to every single healthcare professional working at both of our NICUs: Baylor Frisco and Texas Health Plano. The doctors, nurses and everybody else have been amazing, caring, patient and just plain wonderful. They are miracle workers.]

Seacrest out.

It’s been too long.

Sorry about that. Did some vacationing in South Padre Island (go – but not during Spring Break), some interviewing for jobs, some navel-gazing.

Remicade treatment today. Two hours of a continuous IV drip. Yay? (At least the chairs are comfy, and the WiFi is OK.)

Check this out:

LABOR DEPT: FEWER WORKERS KILLED ON JOB IN 2007

Aug 20th, 2008 | WASHINGTON — The number of U.S. workers killed on the job has dropped to a historic low.

A government report released Wednesday shows there were 5,488 fatal work injuries last year. That’s the lowest number since the Bureau of Labor Statistics began keeping track in 1992.

There were 3.7 fatal work injuries for every 100,000 workers, the lowest annual rate ever reported by the fatality census.

The 2007 numbers represent a 6 percent drop from 5,840 deaths reported to the Labor Department in 2006.

There were increases in some types of work fatalities. The number of fatal falls on the job rose to a high of 835 in 2007, while workplace homicides increased by 13 percent.

The numbers are preliminary, with a final report on 2007 due next year.

Salon provides breaking news articles from the Associated Press as a service to its readers, but does not edit the AP articles it publishes.

Copyright 2008 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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Question: Do they take into account the fact that less people are working anyway? It’s hard to die on the job when you don’t have one.

Back bloggin’ because of the public outcry (MySpace blog from 2.26.08)

Tuesday, February 26, 2008

Back bloggin’ because of the public outcry
Current mood: sweaty

Once more into the fray, or at least into the dank basement that is my mind.

Ralph Nader is back. Oh, Ralph. I feel bad for him. All of the groundswell of support that Obama is getting–that’s what Ralph needed four and eight years ago. I think it comes down to charisma. Ol’ Ralphie Boy has some great ideas that people should be passionate about, but his personality doesn’t inspire. Bummer.

Random endorsement: Twix Java. This is one of the greatest things that ever went into my mouth. You can’t go wrong with a chocolate cookie covered with coffee caramel and milk chocolate. You just can’t.

I hate 95% of all Lexus drivers. I think that when you purchase a Lexus (which, from what I hear, is just a souped-up top-of-the-line Toyota sedan), that “I paid an exorbitant amount for a car, so now I own the road and can drive like sh*t” feeling is a freebie they throw in at the dealership. To paraphrase David Cross: You don’t have to be a Lexus driver to be an a$$hole, but you do have to be an asshole to be a Lexus driver.

Random endorsement: “We Need Girlfriends” on YouTube. A DIY sitcom that NBC allegedly bought and will produce.

I’ve been jotting down notes for another spam-focused blog. Just waiting for the furor over my last one dies down before writing it.

Once again, I have contracted Fantasy Baseball Fever. The only cure? Geeking out and making up extensive lists of players to prepare for the annual drafts of my two leagues. Luckily, Shannon is very cool about this hobby/obsession.

Random endorsement: Board-certified doctors. They’re the only ones I will go to or recommend. And yes, I do become a bit of an academic snob when researching a new physician. I’m not 100% keen on seeing someone from the Universidad de Tijuana or Southeastern Montana College of Medicine.

Over the past several years, I’ve become a boxing fan. And although last Saturday’s Klitschko/Ibragimov heavyweight bout was an incredible snore, I really like how Klitschko (who won) is trying to unify the FOUR different heavyweight belts. For non-boxing fans, there are at least four major sanctioning organizations within the sport, all of whom have title belts. Not to mention the “unofficial” Ring Magazine championships. Klitschko’s win gave him two belts. I really hope his matches for the other two actually happen, and are infinitely more interesting than this first match.

Yesterday it was 80 degrees and sunny here. We even did some brainstorming outside in the courtyard at work this afternoon. Today, it’s like 54 and sunny. Some might cringe at the thought of a 26-degree drop. But I’ll take it any day over snow, slush, ice and temps in the 20s or 30s.

I had my every-eight-week Remicade treatment yesterday. Basically, I sit there for three hours or so while this monoclonal antibody is infused via IV. I’ve been going for these infusions for several years, and it’s usually fine. Sometimes I’ll sleep, or watch TV if they have it, or read, or pretend to do work that I’ve brought. Sometimes, I’ll share illness stories with the other patients (if there are any). Yesterday’s companions were both Rheumatoid Arthritis patients–one very nice 70-year-old lady with more metal joint replacements than she could count, the other a 50ish woman who used to live in Hawaii but was driven away by the humid climate (and its effects on her physically).

Speaking of medicine, I’m switching gastroenterologists. I do like the guy I’ve been seeing since I moved to Texas, but two straight horrible “customer service” issues have sent me packing. When you call in a prescription refill, you don’t get a nurse or the doctor. You get a receptionist or one of the various customer service reps at this large practice. And twice in the past several months, I’ve had to make multiple calls to both the pharmacy and the office (who was to blame) and basically missed doses of my medication because the promise that “we called it in” was either a lie or accidentally untrue. I need my meds, and I need a direct line to somebody who says they’ll do something and gets it done. So goodbye, G.I.

Enough serious crap. How about “The Moment of Truth” on Fox? Last night, I didn’t see the whole thing, but apparently a contestant admitted (right in front of her husband) that she would leave him if her ex-boyfriend would take her back. Which brings up the ultimate question: what’s worth more, your marriage or the $25,000 she stood to lose by just quitting? Apparently for her, it was the cash.
[Editor’s Note: Hi, Editor here. I just Wikipedia’d up the show, and it seems that she did admit that she’d leave her hubby for the ex. In a fun twist, she ended up losing $100,000 because she lied when she said that yes, she thought she was a good person. Awesome.]

Tonight is American Idol, which is nowhere near as fun without all the crazy people.

End transmission. Thanks for reading, hope you enjoyed it. If not, you can get your money back by calling 1-900-GET-A-LIF.

Happy World Crohn’s & Colitis Day! (MySpace blog from 5.23.07)

Wednesday, May 23, 2007

Happy World Crohn’s and Colitis Day!
Current mood: awake

Seriously, that’s today. Don’t go out and try to get either disease, I think they just want us to educate people about it.

See more at http://www.trueguts.com or the True Guts page on MySpace.

If you don’t know me personally, you don’t know that I have Crohn’s colitis. And not just the “normal” version–my tummy problems didn’t really manifest themselves with big bad horrible stomach symptoms.

No, I developed pyoderma gangrenosum (say that 10x fast), which is basically large deep ulcers–mine appeared on my left leg between the ankle and knee. After a zillion different medications, a couple failed skin grafts (one real, one synthetic) and about 8 years of daily bandaging, I’ve been fully healed for about a year.

You may not know that I go for Remicade infusions every eight weeks, or that I take Imuran (an immunosuppressant) every day, or that I actually shrank a half-inch or so due to bone loss, thanks to long-term Prednisone use. (I know, you’ll all still think of me as a glorious 5’7″.) So I also take a bunch of calcium every day.

I’m not writing this to elicit sympathy or charitable contributions (which can be made to me directly, send e-mail for details). I’m trying to help the guy at TrueGuts.com get this thing going, because every other disease has a day…why not mine?