How it all began: Part 5

Meeker, our Welsh Springer Spaniel, was tethered to a short leash and mom was in control of the dog's path as we meandered over the open, rolling hills of brush in San Diego. Mom and I were talking when the subject of my disease was broached. She provided a bombshell in her normal, quiet way.

"Your doctor actually told me it is my fault you are sick," she said.

This conversation took place at least a decade ago, at a time when I was still trying to figure out what having arthritis meant in my life. There were, and remain, many things I don't know. Some for fear of knowing the truth. Some because, well, it's just hard to think about and ask your family about.

This revelation, however, never would have crossed my mind had mom not said anything. I mean, how was it even plausible that she would be to blame for me getting a crippling auto-immune disease? These things happen as happenstance. Doctors know how we get them, but not necessarily why. It's like winning the reverse lottery. A Bizzaro World-version of getting your just due.

Wait a second. Apparently my doctor, just a local rheumatologist, had other ideas.

How was this possible?

Mom went on to explain the doctor's backwards explanation, which provided a massive helping of guilt onto her in the process. It's not really important why he thought it was her fault because as any rational person, and especially doctor, would understand is the fat that the origination of arthritis is still unknown. We can't blame anyone for our disease but fate.

It has stuck with me, however. I still, years later, feel for mom and the guilt trip that doctor put on her. She has quietly carried it with her, despite the fact that she knows the truth, and that hurts me deeply.

None of us are to blame for other people's illnesses. The enemy has its ugly way of giving us these things but it is God who uses the tribulations to teach His message, through love, and most importantly to let us see how our faith in Jesus can bring us out healed and better for the experience.

Next up: G.I. Joe

Two and half decades of heavy reliance on legal drugs of all sorts takes a toll. They are a necessary, but no less shitty, evil. My disease’s greed for medicine has been just that. Besides the permanent joint damage left by years of steroids (cortisone), non-steroidal anti-inflammatory meds like Ibuprofen have killed my gut. It’s a problem that has gotten progressively worse, and is now being treated as inflammatory bowel syndrome. It’s a life-altering complication, one that has grown worse exponentially the last five years.

I worked full-time before getting laid-off in December of last year despite living with this problem. It silently sucks your life. It’s hard enough managing the arthritis without having to visit the rest room up to 20 times a day. Yes, 20 times a day. Not many folks in my world even know of the problem. Let’s face it, it’s an embarrassing one. But it’s one that will be dealt with tomorrow.

It’s brought on even further complications, like kidney failure and chronic kidney stones the size of marbles. That comes from severe dehydration. Emergency room kind of dehydration.

I go in for a long-awaited check of the interior ongoings of the gut. It’s called an enteroscopy, as well as an endoscopy. With hope, and God’s will, the problem will be officially diagnosed and treated. If it is, and I am hopeful that it will be, it will bring a dramatic change for the better in my life.

Yes it will.

There is a better way

It’s a question many disabled Americans face everyday: at what point does their own health situation become too heavy a burden for the people around them or, worse, themselves?

I’ve witnessed this at a fast growing clip. Perhaps this is an inevitable conclusion after a long-standing chronic disease. In my case, it’s a quarter century. Tempers and patience wear out, just like joints do. Maybe faster. And there are no drugs to prolong patience. Not yet, anyway.

So when is enough, enough? Even our deepest commitment to love someone will be tested during times (or years) of illness. Years go by and the healthy put up with all the baggage the patient carries, from the physical pain suffered to the altered mindsets from medication to the hours spent agonizing over the disease with doctors.

Best intentions just don’t seem to last in many cases. The patient often doesn’t realize there is a problem until it’s too late. By then, rifts and resentments develop. From that point, it’s hard to reverse time and correct those problems, especially when the disease fails to improve noticeably -- or the more likely scenario, when it gets worse.

Determination to self-sufficiency isn’t the only solution for the patient. See, people have this tendency to do a funny thing. They care about others. So whether the patient can, or can’t, care for himself doesn’t matter. Their loved ones are going to care. Maybe it just is a matter of will. How much can you bear to see someone change from their disability before you just can’t find the same zeal to care about them like you did before?

For some, a bigger problem arises first. A patient’s self-loathing that can surface from having a disability can become a burden too great for some. Even for patients with Christian beliefs. Hey, even the Apostle Paul spoke of his “infirmity” in less than glowing terms. Paul never said what his “infirmity” was. In our individual case, we know exactly what our “infirmity” is. And so does everyone around us. It can – can being the operative word – chip away at our self worth, if we let it. The disease can run our life, if we let it. Physical pain, even when we don’t want to let it exist, does, and for some the pain is enough to submit.

However, the Bible teaches a better way.

How it all began: Part 4

Part 4 in an ongoing series

Chuck was black. He wore reading glasses. He smiled a lot. Every day, I saw him roll by in his custom wheelchair which looked fun to ride. He always fit snugly into the chair, his plastic brace that encircled his chest made sure of that. But Chuck was in a perpetual good mood. In our wing of Children's Hospital in Los Angeles, it seemed, he was among the few.

Chuck and I were about the same age. When I was admitted there in the mid-1980s, Chuck was already a patient. He'd been there some time already and would remain there even longer than I. He needed his positive outlook more than I. Chuck, found out on my last day, had unfairly caught a bullet in his spine during a drive-by shooting outside his home in L.A. In all likelihood, he's still in that custom wheelchair.

Our paths to get here were different but our destinies were identical. Why was I here? Mom and dad had been faced with the gut-wrenching decision of admitting me for a two-week stay to battle affects from the arthritis. By now, the disease had migrated from just my left hip and knee to other major joints. Now it was firmly planted in both knees, hips, ankles, shoulders and elbows. The arthritis was full blown and full boar.

I'd been in the hospital before, but this just felt different, even though I knew little about what was happening. You have no reference point at 13 or 14 years old. It was totally necessary, though. By far the worst problem was my knees. They had begun to contract, meaning they wouldn't straighten completely. If this problem is not addressed, a patient becomes automatically disabled for the rest of their life. To prevent that nasty possibility, I underwent a successful, albeit primitive, procedure, called serial casting.

The day before it started, I was told I'd be staying in the hospital and not returning home. We had no idea when my folks took me to the doctor this would happen, but when my rheumatologist saw me that day in clinic, he immediately reserved a room. Terror set in for at the prospect of staying this time. All I wanted was to go home. Mom and dad, however, knew I couldn't.

My staying was not negotiated. I knew my parents felt terrible. Their dilemma to either comfort or protect was obvious to even me at the time. Even so, I tried my hardest to make them feel even more guilty as they finally said goodbye and resisted the urge too turn around on their way out.

Before I went to bed, Chuck passed by. He flashed me a smile when he saw me crying. He probably knew what I was feeling.

There's only one way to describe serial casting. It's a form of torture. I first laid down on a gurney, my knees so bent you could form a first underneath them. First, each knee is drained and injected with cortisone. Then, despite my atrophied hamstrings, a nurse and doctor simultaneously pulled on the leg in order to get it a few degrees straighter. As that's happening, another nurse steps in and wraps plaster the length of the leg until it hardens the knee into its new position. Picture hyper-extending your own knee and holding it there with a cast. That's what serial casting can feel like. It did for me.

After two days, these straight-leg casts on each leg are sawed off. But only briefly. The ordeal is repeated and will be about four times until each knee can straighten perfectly on its own.

On the days in between, Chuck and I got to become better friends. Here we were, one black teen in a wheelchair and me, a white suburban kid, hobbling around in two leg casts. Just being around him was good for me. When you commiserate with someone in sickness, even times like this can go by quickly.

It went quickly for me, anyway. In two weeks, I left Children's Hospital without the problems in my knees that brought me. Twenty-five years since, I can look back and be thankful for what happened. And thankful for Chuck. Though, I'm not sure if he would say the same thing now of his time own time as a patient.

Just bumps, baby

Recovering from any surgery is never easy. Bumps in the road are common. This time it's been the result of a hematoma that developed right under the sutures on my recently reconstructed foot. Two weeks post-op, with everything healing just fine, two holes burst open in the skin after the stitches were pulled.

Infection is a huge concern. And infection, if it were to get into the hardware (screws) in the foot, would basically put me up the creek without a paddle. And in my immune-suppressed body, let's just say, it would be ugly. So to fight off that real possibility, I've been seen weekly at a wound care specialist where I undergo cleanings and debridements. These are fun. Not really. But it's all part of the process. Bumps, if you will.

How it all began: Part 3

Part 3 in an ongoing series

My family was pretty cool, I thought. Still do in fact. Back in 1978, my dad made a ballsy move on our behalf. That summer, after careful planning, he packed of his New Jersey family of five into a used camper and trekked 3,000 miles across the U.S.A to the opportunity-laden area of San Diego. His dream, eventually fulfilled, was to start a computer programming company there, a venture he nobly ran for many years just as the personal computing industry was in its infancy. To give our mom and his three sons a taste of snow in December -- a weather element we all missed despite falling in love with the beaches of Southern California -- dad made plans every Christmas to take us snow skiing. That is one of the neatest benefits of living in San Diego. You have the beach and the mountains within a few hours of one another.

Having JRA, as we began to call the disease I had been diagnosed with, never stopped our family tradition. I, in fact, took to skiing best of my three brothers before my sickness set in. Probably a result of being introduced to the sport at such a young age. Our yearly jaunts took us from places like Big Bear or Mammoth Mountain to exotic destinations like Lake Tahoe or, in what would turn out out be my last attempt at skiing, Utah.

Before Utah, skiing and me got along very well. I loved it. The trips to the ski shop where the strong smell of ski wax filled the air still holds fond memories. The snow always felt so fresh and even at a young age you can't help but be in awe of the majesty of the mountains. God was definitely in our presence.

Lake Tahoe was the best. Even though I rarely made it beyond the beginner's runs, taking the lift and jetting downhill was thrilling for a young man. Getting to do it with my brothers and dad just made it all the better. We were pretty good at it. I know why snowboarders are so in love with their sport.

Though the disease was getting more active, taking on more joints every year, I continued to ski at Christmas into the 80s. How could I miss it? When I was just about to turn 14, we decided a trip to Utah was in store. We'd never been that far away to go skiing, so this was an adventure. The family actually piled into a camper again and drove over 800 miles to find the pristine slopes.

Now, from my earliest stages of having the disease, I always tried to ignore the fact that I was sick by continuing most, if not all of my regular activities. It was my way of flipping the middle finger at illness and set in stone my personal theory for dealing with the disease as an adult. I should have learned a better lesson though. While it may seem rebellious, maybe even admirable, to ignore your symptoms, that way of life has probably cost me years in life. In the very least, it has caused me to have more irreversible joint damage as an adult than most patients with rheumatoid arthritis. It has cost me money and copious doses of pain and resulting medication.

That first, and last, day on Utah's slopes for me saw a 14-year-old on skis doing his best to ignore how incapable of skiing he really was. My hip had very little range of motion and my left knee couldn't bend. I still got fevers just about every morning, but that didn't matter. No one could stop me from being a regular kid and my folks tried hard to get me to do regular kid activities.

I made it up the ski lift alone. As my brother took on an intermediate slope, I meandered down a beginner run as usual. As I got fatigued faster than usual, I decided to head back to the lodge on my own. I headed for a pulley-type lift that took skiers back up an incline. Just as I was in the middle of the hill, one ski caught a piece of ice and before I knew it, I had fallen off. I tried to hang on and it pulled me a few yards before I let go. There I was, on my back and by myself.

Fright set it. Who would help me? No one was around and no one could hear me through the forest around me. It was up to me to find a way. I finally got my bearings and did the only thing I could. I pulled off my skis and hiked up the hillside in my ski boots through deep snow pack with carrying my skis and poles. It took me over an hour to climb a hill about 30 yards long.

It was my last time skiing. Now, you might say I should have gone back out there. Maybe. The reality was, I was living well beyond my capability. I was lucky that day didn't end with me hurt. I'm fortunate I only was tired and cold when I got back safely to the lodge.

Arthritis is a disease that takes away constantly. It has taken away four of my joints forever. It stole opportunity then and continues to do so today. But it has also given me much more. It's allowed me to better understand others' sickness and disability and have an open heart to their struggles. In them, I see myself. I know their tribulations. I've lived them myself. That day on the slopes hurt me emotionally because it marked a day where I had to say say goodbye to something I enjoyed. However, it also was the beginning of something much bigger. And maybe even better.

How it all began: Part 2

Part 2 in an ongoing series

Once you get diagnosed with Juvenile Rheumatoid Arthritis, you're left with a lot of questions. But at age 12, the questions are better left made by people like your parents. Mine had many, and they still do to this day. Still, twenty-five years after that blood test came back with a positive rheumatoid factor, they have just as many unanswered questions as they did the first week.

What did it all mean? Is it treatable? The biggest one, the most confusing one, was how did this all happen?

There were, and remain, a lot of theories.

One doctor asked if I had been to Mexico lately and drank the water there. No, my folks answered.

Our own theory was that an injury I had suffered a month earlier in our home's backyard was the culprit. I'd had arthroscopic knee surgery to fix torn cartilage as a result, and maybe - just maybe - I was victim to a compromised operating room. It's something no one could prove.

Or was it the result of a childhood food allergy to processed food? Special diets through the years have seemed to rule that out.

Or did I just simply become a statistic, another one of the thousands of young people who got JRA for the same unknown reasons why any of us catch diseases, big and small? Over time, we all tend to settle into the easiest answer because, honestly, we are too busy managing the diseases daily changes to have any time to find out alternative answers. It's the quandary anyone with a serious health condition faces.

The disease in Year One, wasn't totally active, looking back. I was immediately put an a non-steroidal anti-inflammatory drug. It wasn't until Year Two when I was introduced to steroids like cortisone and prednisone. A few years later, I started seeing my first pain medicine.

After the first 12 months, I still only had arthritis in my hip and knee. I was still a fairly normal kid, and played sports at school. I even played competitive lacrosse. It wasn't all that bad. Doctors even held out hope I would go into remission by age 16, a hope we held tightly, even when I turned 18.

How it all began: Part 1

Part 1 in an ongoing series

Leave it to Beaver was on the television, me in my bed watching intently as any typical 12-year-old might. Mom was sitting next to me in a chair, a constant companion in my private hospital room. They give private rooms to people who either pay the extra money to get one, which we did not, or for folks, like me, who are really sick.

How sick, that was up to the 72-hour blood test being performed to single out the infection that had made its way into my blood stream and surfaced as an inflamed left hip filled with puss. As I lay in the hospital, a long clear tube was jetting out of the hip and fed into a small round plastic container. It was slowly siphoning any infection left over from the surgery performed to clean it out a few days earlier.

This, as it turns out, is normal procedure for these types of things. My close-knit family sure wasn't accustomed to this. This was probably the first time in my family's history that one of its own was in such a precarious medical state. I mean, the worst thing that had happened to us was when my older brother Darrell busted up his forehead while riding a bike too fast as a kid in suburban New Jersey.

The five Popes were now living happily in Solana Beach, Calif., a picturesque coastal town that was quintessential 1980s San Diego. Wicker furniture and macrame were common in every home. It's the birthplace of things like street luging, fish tacos and drinks made with wheat grass. It was, and still is, a great place to live.

I was a pretty typical pre-teen back in 1984. I played Pop Warner football, rode a BMX style bike to school and always wore long shorts and Vans tennis shoes. My major concerns back then were getting to school on time and getting the high-score on Asteroids at the local 7-11.

But one April morning changed all that. Instead of heading off to Skyline Elementary school, I headed to the hospital with a raging fever and a left hip that hurt so bad, mom had to avoid bumps in the road while in the car because it would somehow make me feel worse.

As soon as I got to Scripps Hospital, I went into the operating room. I don't remember much more from that day but my memories are filled with what happened in the ensuing days as a two-week guest there.

In three days, I'd be given the diagnosis of Juvenile Rheumatoid Arthritis. Yes, at 12, you can get arthritis. Not the kind most folks know as they get older and their joints wear out. This one was different. It meant my immune system didn't know how to fight off the disease that had set in. In so many words, my body was turning on itself.

"There is no cure," I remember the doctor saying.

Of course, no one in my family would knew the journey that lay ahead. And as the doctor left the room, Leave it to Beaver was suddenly over.

Work towards patience and find your reward

Anyone who has been sick for an extended period knows that, during these times, we develop curious amounts of one important trait: patience.

Some say the real blessing from above actually lay in the waiting, you know, the time we spend pining and anticipating God's response to our tribulations. That time, as many know by experience, can take a long time. So what do we do during that time that can make us better people? Well, God talks about that very thing in his word.

It confirms that we all don't inherently have patience. We must work at it. Man, can't we all begin with patience? Nope. I've learned this time and again, whenever I'm in the hospital, or recovering from surgery, or waiting for career opportunities to happen.

James 1 even says we must work towards earning a beginner's level of patience. It reads, "Count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have it perfect work, that you may be perfect and complete, lacking nothing" (NKJV).

Ecclesiastes 3 in the Old Testament talks about waiting for God's timing. Now that's something I've been praying a lot about lately. In verse 3, it reads, "There is a time for healing, a time to break down and a time to build up." Everyone can relate to that statement. Sure, we want things now. But read that again. To me, the passage kind of lets us off the hook. It says that it's OK to sit tight for a period of time, whether it's taking time to heal or mend. God is cool in that way. Rather than put pressure on us, He says, "Just chill out, friend."

Can't we all be helped by taking that literally? I know I can.

God doesn't stop there, however. In 2 Thessalonians, the Apostle Paul says something very interesting which we can all rally around. It says in Chapter 1:3-4, "...the love of every one of you all abounds toward each other, so that we ourselves boast of you among the churches of God for your patience and faith in all your persecutions and tribulations that you endure, which is manifest evidence of the righteous judgment of God..."

Wow. He's saying, without mincing words, that our patience in the time of tribulation is what earns us points with the Big Man himself! So, it's actually to our benefit to be patient, however hard, because God sees our effort in this area. It's hard to do, don't get me wrong. But I know from my own experiences that if He's watching me, and approves, good things happen.

So remember, when times are hard because of your illness or condition, He's watching you. We can either choose to rush our condition (a trap we all fall into) or we can wait it out. And as long as our heart is in the right place, this period of waiting will pay off in the end. I hope it does for you, too.

One year down and the shoulder is healed

Back in April 2008, I had a shoulder replacement of my right side. This was the second such time for this type of procedure, the first taking place on my left in the summer of 1997. I was very nervous before this surgery because I worried that, perhaps like the one before, I would be left with difficulty reaching behind my head. You wouldn't believe how precious that motion is until you don't have it. For almost a year, I could not reach behind my head with either arm. My left side never healed correctly an the right side was so far damaged the doctor said it was not only bone-on-bone but the joint nearly wore through the socket completely. No wonder it hurt. So you can understand my thoughts of it healing wrong. Once the surgeon got in there, he said it was so worn, he could only perform a hemi-replacement, which is like having it half replaced. You see, for me, the plastic cup the new metal joint would normally seat could not be affixed properly.

Once I awoke from surgery, with my brother Jeff at mt side, I asked one question.

"Did they do the whole thing?"

"The doctor did a hemi," the nearby nurse said after looking it up in her chart.

I began to sob wildly. Devastation set in. I thought having a hemi would mean I'd never be able to reach behind my head again. But hat night, while reading, the Lord led me to John 11, the story of the death of Lazarus. Though Jesus arrived to give Lazarus his healing, the bible tells us He "groaned" inside Himself. Why? The crowd, including Mary and Martha, failed to show their faith in Him. In effect, He was saying we must believe on Him no matter if He is there in person or just there in our thoughts.

That is what we must always remember: Jesus is there for us through every bad thing and all we must do is call on Him. When we do, He shows up. I didn't do that for my shoulder, but Jesus showed up anyway and a year later, my fake shoulder works just as good as the original. By the way, my surgeon's name? Dr. Lazarus. No lie.