My View of Life - Never Better!

On top of my game for real

How Do I Deal with Chronic Illness?

I explored just about every specialty my nursing career had to offer. For 13 years I tried my hand at medical, surgery, intensive care, long term, home health, hospice, emergency, management, and much more. When it was all said and done, it was the ER that provided the best opportunity for me to make a difference in people's lives and their families.

These were great years. I was healthy and strong. My friends would marvel that a little 140 pound 5 foot 8 and a half inch fellow could carry a 67 pound back pack up high mountain trails and hardly get tired. I enjoyed all kinds of sports. I truly felt my body was invinsible. I was going to be healthy longer than anyone, live longer, and enjoy sports and activities well past a 100 or so. As far as I could tell, I only had one void that caused considerable concern.

My wife and I felt our relationship, our marriage could be better. We'd sunk every ounce of energy and money we had into our kids. Our oldest daughter was now preparing for her own marriage. We felt we had no energy left for each other. We both just figured to grind it out for another 10 years until they were all raised.

Almost to the month our daughter married, my feet began to ache. The pain became intense. I was diagnosed with plantar fasciitis. I slept flat on my back for months with my feet in special boots. By then, the only change was my left shoulder began to hurt. This pain too was so agonizing I wouldn't move it. I received a cortisone shot that relieved the pain from that shoulder, but the pain simply moved to my right shoulder. At that point we knew...my illness was auto-immune.  It took 4 more months to see the rheumatologist. By that time the pain was excruciating to my shoulders, back, wrists, hands, knees, ankles, and feet. It's not a good feeling to have to have others zip your pants or tie a shoe. I gave up all sports. If I tried, the cost of pain was too great. Just continuing my employment was my goal that I'd re-affirm to myself every day.

I did my job as an ER nurse the best I could. Knowing that some shifts we'd walk nearly 10 miles, I never knew when I started if I'd be able to finish. My main fear was that my co-workers would have to pick up the workload for me. The only feedback I received was that they noticed I was down. They said I wasn't my normal energetic positive self. But I couldn't be. I couldn't be chipper with so much pain. Here's just one example. One day I decided that I wanted to make a fist. Normally I could only bend my fingers one inch. The pain was horrifying, but I worked at it all day. At 8 pm that evening the fist was made. I rejoiced, but the next morning I awoke only able to move my fingers one inch, and the pain to those fingers was even more intense than before. But the thought haunted me. Could I not be happy and cheerful through pain? I'd just have to try it, and see what happens.

I saw the rheumatologist and was diagnosed with rheumatoid arthritis. I started on prednisone, naprosyn, and methotrexate. It was a miracle. Within days the pain was reduced significantly. I was back to my jovial self. I had life anew. I guess I wouldn't have to try being cheerful inspite of pain.

Three years went by and I started picking up some of the sports I'd discontinued--skiing, hiking, backpacking, basketball, baseball, golf, and others. I made myself a motto. It was because I was grateful for all the activities that I figured I'd never enjoy again. I'd be "NEVER BETTER." When co-workers and friends asked me how I was, I'd answer..."never better."

Again, I felt on top of my game. I was weaning off the prednisone which, though it was my miracle drug, had long term side-effects that I didn't relish. But, at the height of my jubilation, I noticed a lump that grew incredibly fast. I was quickly diagnosed with cancer. My wife and children gathered around the table in tears, but I was numb. I had no idea what was ahead of me. I just figured this was probably it. Well, I was 46. I wasn't the youngest person to ever pass on from illness by a long shot. It was that day my oncologist told me that if I was going to make it through surgery and radiation, and then recover, I'd need to have a positive attitude. I pondered this for a few days, and on our next appointment, assured him that I'd already made my decision. I'd be--never better.

Surgery was awful. I don't recommend it. But if the alternative is dying I withdraw that statement and whole-heartedly proclaim--"go and get it!" The problem is I won't take narcotic pain medications. I don't like how they make me feel. I took one tylenol. The surgery pain didn't compare to my arthritic pain, but the numbness from the 4 inch incision was bothersome for 6 months. I showed up for a work meeting the next day. My co-workers thought I was crazy. When I got home, I felt like they could well be right.

Radiation was a nightmare. When that huge linear accelerator locks in place above you, you know you're in for it. I was told that the staff found a patient up on top of it once. Just before it finishes calibrating everyone clears the room. Then there's the clap of the circuit breaker, and then the buzz. It's not like the buzz of an x-ray that lasts maybe a second. This one goes on and on, and when it finally quits, it swings down underneath and zaps you again--on and on.

Since the tumors were in my abdomen, the worst side-effect was vomiting. I threw up almost constantly. There was some good news though. The radiation treatments were only on week-days so by Saturday night I could eat. I ate like a pig until Monday afternoon then it was a few mashed potatos, jello, and water until the next Saturday night. Thank goodness the treatments only lasted four weeks. I lost 15 pounds that month, and that was after receiving 4 liters of normal saline--8.8 lbs.

Each time I'd arrive to the cancer center I had an opportunity to talk to other cancer patients. I was amazed at every one of them. Each person was completely full of gratitude; even if it was because they could move their arm or breath that day, or perhaps their radiation rash wasn't intollerable. Some were grateful they'd lived to see another day. Others were brought in by ambulance and received their treatment via stretcher.

I decided I had it easy compared to a lot of them. But I too was grateful for...well anything I could still do. I could drive myself to the cancer center. Oh, it was a chore. I was weak! It was difficult just making it from my bed to my couch, or be able to write a little on the computer. My resting heart rate that once averaged 67, was now in the one teens, and my respiratory rate that averaged 14 at rest was at 24. But my most profound gratitude was for my wife. She never complained--not once. She picked up every ounce of slack, loving me and supporting me. Helping me where I needed it. Cooking, cleaning, working, caring for the kids--anything that needed to be done I never heard about it.

The cancer center staff, who were fantastic from the get-go, gave me a diploma. It pretty much was congratulating me for living through the ordeal. My friends came over from the ER and brought me balloons and get well cards. Then they took me to the ER, placed another IV in me and gave me more saline.

I thought I was better. I was back to work but 6 weeks later my thighs began to burn. It felt like a million fiery needles were stabbing through my skin. It was excruciating even to have my pants touch my thighs. I just wore scrubs which still hurt, but not as bad. About one month later, as suddenly as it began, the pain receded.

Again I thought I was better. It was 7 months later. I would take my boys backpacking. I made my pack light--only 48 pounds. I didn't make it a mile. I lay down beside the trail wondering what I was going to do when my 14 year old son who was a half mile ahead of me showed up. He surveyed the situation, and picked up my pack with one hand. "Come on dad, let's go." I made it to camp with my sons carrying their packs as well as mine. They would have carried me if they had to. The next morning they took my pack down, and came back to get me.

A year later my cancer was declared in remission. I had opportunity to ponder and reflect on my journey. My mind drifted to my children. They worried for me, they prayed for me, and they helped me where they could as my boys did on the mountain. And then I sat one evening looking at my wife. She had quite a few grey hairs, a few more wrinkles, and was even losing a good amount of hair. But wow, to me, she was more beautiful than the day I met her. But what were her thoughts through all this? What were her feelings? I knew. I'd asked her. The thoughts of losing me never left her. She lost sleep. She worried. She prayed. She continued as the heart of our home, never missing any of the kids needs nor mine, and maintained her employment as a nurse as well. She's been through a similar ordeal to mine, I marveled. She was with me every second of every day--hoping, wishing, believing, yearning...

I looked at her in bewilderment, recognizing the love I felt for her--deep, profound, undying. Where did it come from? Was it always there? The realization hit me hard--like a lead balloon. It was the cancer! It was the arthritis! The challenges we faced; the ones we faced together. Without those trials I wouldn't have noticed who this woman was that had been at my side for 24 years. There was a time I felt I had it all, that I was on top of my game. I was so wrong. But not anymore. I could tell that the love, admiration, adoration, yes, even worshiping the ground she walked on would never leave my heart again--it would only grow stronger, if that were possible.

People stare at me, often baffled when I share with them my gratitude, for cancer and arthritis. Oh, I want to get rid of them for sure, but they've given me a gift. I appreciate being able to walk, and move my arms. I'm grateful to eat without throwing up. I'm grateful for the insight I now have to care for my patients. I've been there. I have no problem talking about pain and suffering.

I'm forever grateful for my family. Especially my wife. There's never been a day that I haven't thanked God for her. Could it be that all I have suffered, she would have suffered for me if she could? It's a no-brainer. Of course she would. She did.
Now, I figured. Time to get on top of my game for real. But...again I was wrong--way wrong. What if the pain wasn't mine but from one I love?