2005 in Book Form

When I planned on retiring this blog, I thought it would be nice to capture all of the entries (the good, bad and ugly) by putting them into a book form as keepsakes for me and the kids.

Using Cafe Press, which I used to create the Goin' Out to Cally books, I created the first volume of the hard copy of Surviving in Safety Harbor which covers the entries in 2005. Since each book is limited to under 500 pages, I've had to break them into numerous volumes. Volume 1 will include 2005. Volume 2 will be half of 2006. Volume 3 will be the second half of 2006. Volume 4 should be able to fit 2007. And Volume 5 should be able to fit all of 2008.

Below I'm holding a test copy of Volume 1.

(Click for Bigger Pic)

Since, in 20 years, my kids and grand kids won't have any idea what a blog is, I designed the front cover as a blog entry.

The back cover is a mock-up of a web page that is used to enter blog entries.

Not the greatest designs from a mass selling perspective, but since they're for personal use only, I liked this design better.

If you're a masochist, like my brother Paul, you can order a copy online at the Sonlight Pictures store. I can only sell one book at a time, so as soon as my Volume 1 copies arrive I'll be removing it from the storefront and uploading Volume 2... and so on.

My Life With Crohns So Far... Part 16

When I was a kid, one of the priests at our parish was Father John LaTondress. He was a great priest and a good friend of the family. More importantly to me as a little kid, he had a motorcycle! What’s more cool than a priest with a motorcycle? He took me on a ride once and it was amazing. I can still, to this day, feel the wind on my face and hear his voice over the motorcycle engine.

Many years later, my brother-in-law's father, Ralph, passed away. His funeral was the first time that I understood the sense of loss when someone dies. I had known him for years and realized that his personality would no longer grace the planet. That loss was palatable. It was at that time that I began to pray for those souls that I knew that had died.

Over the course of my life, I had accumulated six people for whom I would pray for… My brother Leo, who was born stillborn years before my birth. My oldest brother Joseph, who died unexpectedly of an aneurysm in 1994. Father LaTondress. Father Jerry, my mother’s cousin. Laura, a friend of a friend who was raped and killed on a hiking trip. And “Aunt” Patsy, a friend’s Aunt who was a great hostess on a memorable trip to California. All of them had died and all of them I pray for weekly at mass.

My health at this time had continued to worsen over two years. I had grown fearful, tired and weak. I had planned my funeral, come to terms with my children forgetting me and certain that this disease would finally get me on its fourth try.

Then, one Sunday, we all went to Mass at a friend’s church to celebrate their daughter’s first communion. When I walked in I was surprised that there was a picture of Father LaTondress at the entrance. What are the odds of that? Was he watching over me? It was reassuring to see his face.

During mass, as I sat silently in the pew and prayed, I had finally reached my end. I prayed silently and fervently when, suddenly, the memory of Shaun King came into my mind. Shaun King??? King was the former quarterback of the Bucs when they went to the NFC Championship game in 1997. I remembered that, when he was a rookie, one reporter asked him if he was afraid about being the QB during the championship game. He quoted Timothy from the Bible and said that fear and faith can’t coexist, so, no, he was not afraid.

As I sat in the pew, I realized just how afraid I had become, just how much fear had grown within my heart. And I was tired, so tired of living this sick life. And so tired of being afraid of what my life had turned into.

So, I prayed to God and said “Lord, I can’t do this anymore. I can’t handle it. I was wrong. In high school, I thought I could handle this disease… I’ve offered every painful moment of it up to you… but I can’t do it anymore. I give up. You win. I don’t have the strength. If that means I have to die, then I’ll die, peacefully. If that means never seeing my children again or holding my wife in my arms, okay. I’ll give that up. But I just can’t be afraid anymore. Afraid of passing out. Afraid of the next surgery. Afraid of missing out on my life. Afraid of losing everything… I can’t be afraid anymore. So, I give this all to you. Take it. Do with it what you want. If that means giving my life to you, then you can have it… I just can’t do this anymore.”

At that moment, the most magical thing happened to me. I literally felt six hands lay on me from behind, on my shoulders, back and head. I glanced and there was no one there, but six hands were touching me. It was at that moment that I realized that those six people whom had been in my prayers all those years, including Father LaTondress, were actually praying over me. I could feel the pressure of their hands on my body… it was amazing. My heart was moved and I was immediately filled with an indescribable peace. Tears streamed down my face. My wife looked to me and mouthed with great concern “Are you all right?” I smiled with contentment and mouthed “I’m fine.”

And I was. The insurmountable burden of fear was released. I didn’t know what that meant as far as my health was concerned, but, whatever path lay ahead of me, I wasn’t afraid anymore. Faith and fear can’t coexist. It reminded me of something my father said to me as a child… sometimes God wears us down because, only at the end, do we give everything up to Him. We are either exercising free will or following God’s will… there is no halfway point.

So, at that moment, I gave everything up to Him. And, with the help of the prayers of my six guardian angels, the chains of fear had broken loose, and I let God take over.

The next time we saw Dr. Levy, as a last ditch effort before surgery, we tried a new medication called Remicade. To everyone’s surprise, it worked… it was as close to a miracle as one can get. My Crohns went into temporary remission. Now, I get a Remicade dosage every three months. Sure, I have bouts of Crohns every now and then, but I got my life back. I was able to shoot a feature film with my daughter. I was able to coach my son’s baseball teams. I’ve been able to celebrate many more wedding anniversaries with my wife.

A few years later I saw Shaun King at a restaurant. Having worked in the entertainment industry, I am not comfortable approaching “celebrities.” But, I was moved by the Holy Spirit… he should know just how much he touched me. So, I relayed the story and told him that, because of one sentence he said years before, one sentence that exemplified his faith, it had guided me through a very dark time. And that, because of that guidance and God’s grace, everything had gotten much better. He shook my hand and asked me my name. “Peter” I said. “I’ll keep you in my prayers, Peter.” And, with that, I left him to finish his meal in peace.

Now, I thank God everyday for this gift of life… and health, even mine. I don’t know if Remicade will work forever. But, by God’s grace, I have been able to live my life again. And that is a gift for which I can only repay through living my life to the best of my ability, through my faith, everyday.

My Life With Crohns So Far... Part 15

Thankfully, I was eventually able to leave the hospital. On the drive home, even the fresh air smelled like wet, smoky laundry. It ended up taking two days for the smell to completely disappear.

When I told my Miami doctor about this upon a follow up visit, he stated he had never heard of such a reaction to anesthesia and the follow up meds before. He was really excited about it all! I wanted to shove his face into a sheet soaked in year long ash tray waste... then see just how exciting he'd think it was. Thinking about the odor, even now, turns my 2-liter stomach.

The expectation after a surgery is that you have about two years where your symptoms should be relatively small… enough time before the scar tissue begins to build. This gives you time to heal and to make some headway in your life before the disease begins to slow everything down again. More importantly, it was time for me to emotionally and spiritually heal from the recent events.

Unfortunately, the Lord had other things in mind and things went from bad to worse.

Soon after my surgery, when they removed my effected areas of my intestinal tract, my Crohns decided to invade my colon. The troops were rounded up and the attack was imminent. Unfortunately for me, I was not informed of this impending colonic battle.

My recovery from this second surgery was very difficult. I just didn’t seem to be getting any better. But, I continued to offer up my illness, my sacrifice, to God. Though my suffering was beginning to take a very large toll, I was determined to praise Him by dealing with it the best I could.

Over the next two years my health continued to worsen. From a year before the last surgery, through surgery, through recovery and now this constant deterioration… would this never end? I was starting down the slipperly slope of declining health and I just didn't have much strength left to fight journey. I had always thought this would end someday... as if the Lord would reward me for my sacrifice by curing me or something. But, then, it wouldn't have been a sacrifice would it? No. I knew that wasn't the deal with offering up my pain... I just hoped beyond everything that the Lord would grant me a miracle.

At this point it seemed as if there was no end in sight. I started to accept the eventual outcome of this latest path and my wife and I started making plans for what would happen if and when I moved on to the next life. We made a will, talked about my final arraignments and what I could do to help her now, in case I didn’t make it.

That’s not a discussion many people ever plan on having with their spouse. How do you correctly end a sentence that starts with the words “When I die…”

It was emotional, it was painful, it was sad, somber and depressing. It hurt me at the deepest levels of my soul. I looked at my kids and wondered if they would remember me. Was I in their lives long enough for them to look back and remember their father? Or would I fade away, like my body was doing? Is this the point of my life, to be half forgotten, fractured memories in my children’s minds? That’s why I was put on this planet? That was God’s plan for me? That’s what my offering up my suffering had gotten me?

Eventually, as my health continued to worsen, Dr. Levy did a colonoscopy. The end result was that over 75% of my colon was covered in ulcers, along with new areas of my intestinal tract and near my stomach. He would try some new medicine, but things were not looking good. Enduring future surgeries was a given. Retaining the rest of my intestines was not a guarantee. The end result of all of our attempts, cloudy at best.

Day after day I was growing weak. And year after year, my faith was evaporating. I was growing more and more afraid. At work, I would get light headed simply walking to the restroom. Almost daily, I felt as if I would pass out. What would happen? Who would find me? What if I passed out in a meeting? Or in the hall? Or in the parking lot? Fear was overwhelming me… "What ifs" filled my mind. I didn’t want to do anything, go anywhere, be anyone… I just wanted to lay in bed.

Finally, I had come to the end of my rope. Something had to change or else I would lose everything.

To be continued…

My Life With Crohns So Far... Part 14

There comes a point when you're in a hospital where you may not be 100% physically, but your are mentally ready to get the hell out of dodge. Those days are the most excruciating.... the waiting. That is where your prayer life becomes critical. Granted, most of your prayers include a lot of phrases such as "Lord, get me out of here now!" and similiar type statements, but at least you're able to vent.

I guess its the feeling of helplessness and unceasing pain that combine to inflict the most damage to your spiritual life. Offering up occasional suffering was one thing. But, honestly offering up constant suffering was something completely different. Selfishness seeps in and you just want the pain to stop... more than you want to offer that suffering up to God. Fighting that battle between human selfishness and divine selflessness... it's a constant struggle.

Now, before you can leave the hospital after an intestinal surgery, the first thing you have to do is pass gas. Now, I’ll be honest, I’m really good at this. One might even consider it a talent. But, after my second surgery, it was taking much longer than I wanted. See, the anesthesia actually puts your intestines to sleep and only when they wake up do you start digesting and pass gas. If you eat too much before your intestines are completely awake, your stomach will throw it into reverse and, well, you know the rest.

With the whole smoky, mildewing persistent smell surrounding me, laying in this Miami hospital was pushing my patience to the limit. In this short-sighted mindset, I rushed along my recovery and began eating before I really should. It wasn't long before I became very nauseous. I was certain I was going to be sick and there were two major problems. One, the bathroom was across the room, which, in my current state, mine as well have been uphill, over jagged rocks during a blizzard. Two, when you get sick, you use your stomach muscles and my stomach muscles were freshly stapled closed... just moving the sheets across them was painful.

This wasn’t going to be my finest hour.

As quickly as I could, which to most humans would look like extreme slow motion, I made my way out of bed. With my I.V. in tow, I scurried my way to the bathroom. Now what?

I couldn’t bend down. I couldn’t get on my knees. I was about to be sick and I was in a no win situation. I put on my MacGuyver hat and made my way to the sink. By now, the time had come. With each wave of nausea, my stomach muscles clenched tight and the pain raced through my body like an electrical current. It was excruciating. After some intense, self inflicted pain, the nausea left me. I cleaned myself up and made my way back into bed.

I had learned my lesson. I needed to slow down my physical recovery, no matter how much damage was inflicted on me mentally or spiritually. Sometimes life just sucks. You just have to deal with it.

To be continued.

My Life With Crohns So Far... Part 13

The one thing for which I have been keenly aware during my illness has been the effect of Crohns on my wife and children. Caregivers are the unsung heroes. For a long time, whenever people would see my wife, they would ask about me... as if her needs, her feelings were inconsequential. When, in reality, it was she that was bearing the brunt of the illness. After all, I was home sick, in bed, alone. She had to manage the kids, run the house, everything.

Her life grows exceedingly more complex where mine becomes painful, but simple.

So, as my time wore on in the Miami hospital, my wife's patience was beginning to grow thin. She would stop by to visit me in the room, but the entire experience was wearing on her. Her time actually sitting with me grew less and less each day. After all, what can she do, but watch me lay there. How exciting is that? I was completely bored sitting there. How much more boring is it for her to sit there watching me be bored? I think there's a cirlce of hell reserved for such an undertaking.

One morning she arrived and sat across from me and asked "How are you doing?" As I wrapped all of my thoughts into the word "fine" she said, "Okay, I'm going to go to the cafeteria. I'll be back later." Before I could respond, she was gone. She left the room so fast I half expected a BEEP-BEEP and a Looney Toon-esque cloud outline of her to be at the foot of my bed, slowly disappating into nothing.

I can't imagine how helpless and frustrating and draining and tiring and complicated being the caregiver can be. Thankfully, my brother John and his wife Irene came down and spent some time with my wife. That was a Godsend for her... she desperately needed the distraction.

While laying alone in the room and my stomach swollen and stapled, something odd started to happen. Everything started smelling like old, smoky, dirty, mildewy laundry. Everything. My sheets, the oxygen flowing into my nose, everything.

At one point the nurse brought me some food... it was SUPPOSE to be turkey and applesauce. To me, it was some evil concoction of smell and waste. I tasted it... smoky, wet laundry... with gravy. I was certain this was the dirtiest hospital in the history of documented medicine.

When my wife arrived, I immediately and urgently whispered to her "Can you taste this???? It's awful!"

She dipped the spoon into the food... "hmmm, applesauce."

"Applesauce???? What about that!" I pointed to another selection on the tray.

She took a big bite... "Turkey" she replied.

"Turkey? What the hell is going on?" I asked.

I couldn't get out of there quick enough.

To be continued...

My Life With Crohns So Far... Part 12

We arrived at the hospital in Miami and I was checked in, ready to get my laparoscopic intestinal surgery. It would normally take me about 12 months to recover from the normal intestinal surgery. A laparoscopic surgery only takes a few weeks and you're back to 100%.

We were very excited.

I awoke from the surgery to feel my stomach as if it were on fire. The nurse gave me a manual morphine clicker, which allows the patient to self-dispense morphine to themselves, per the patients needs... up to a point. Every day they lessen the total amount of morphine you can receive and never allow you to put yourself into danger.

When she handed me the clicker she said "Mr. Bauer, I'm handing you your self-release morphine button." My stomach felt as if it was being sawed in half… it was the most intense pain I had ever felt… so I began clicking away... a million clicks a second. Looks like all of those years of video game playing had finally come in handy!

Over the non-stop flurry of "clicks" the nurse said "Mr. Bauer, its not hooked up yet." No matter. The anesthesia was still flowing through my system, so I slipped back into unconsciousness.

I awoke in my hospital room, my wife with me. The doctors explained that they started the surgery laparoscopically, but due to the amount of damage, they had to perform the surgery the old fashioned way. Bonus! Not only did I get a new big scar on my stomach, but additional laparoscopic scars as well! Yeah! Oh Happy Day!

I told my wife that I know that I had a six-pack stomach when we got married, but after two surgeries, the best I can offer her was a 2-liter.

I was pretty groggy for the first couple of days, fading in and out, riding the morphine wave. Apparently, my brother John visited me once. He asked how I was doing. I awoke to tell him I thought I was going to throw up. He then asked where my wife was? I told him she was staying at the Green Mile Hotel.

He still gets a kick out of that story.

Soon after my recovery in the hospital started, my patience for staying there was growing thin. I just wanted to go home and I would do just about anything to get out of there.

To be continued…

My Life With Crohns So Far... Part 11

The textbook effect of Crohns disease is that a surgery is required every five years. With active Crohns, ulcers create scar tissue. The scar tissue builds over time, usually over a five year period, until it causes a blockage. At that point, you need surgery.

I got Crohns in 1989. My first surgery was January 1995. As we neared 2000, I was due for another trip to the hospital. Like clock work, the textbook was right.

After a bout with what felt to be a standard Crohns attack... intestinal swelling, bloating and nausea... you know, good times... things got worse. I couldn't keep any water down. Even after the swelling had mostly diminished. By 2000, Dr. Boyd had left private practice and went on to teach at the University of Florida. I called my new gastroenterologist, Dr. Levy, and told him of my problem. He said simply, with his blunt New York accent "Looks like you have a blockage. Go to the hospital. You'll have to have surgery."

I wasn't prepared for this on any level... physically, emotionally, mentally or spiritually. I felt like I had just got kicked in the groin. "Okay" was all I could muster in response and hung up the phone. My wife was equally as unprepared, but she drove me to the hospital and I was admitted. As a last ditch effort they pumped me with prednisone to see if it would help. To everyone's surprise, it did. My intestinal swelling decreased enough so that the scar tissue was no longer causing a blockage. But, we all knew this was only a temporary solution. The clock was ticking. It was only a matter of time before surgery was inevitable.

The first surgery was such a bad experience, my wife and I used our time once I was released from the hospital to pursue other surgical options. We found that they are now performing laparoscopic Crohns surgery in Miami. The recovery is greatly reduced and the scarring minimal. Sounded like a winner to me!

We drove down to the hospital in Miami, met with the doctors, had exams, scheduled the surgery, etc. This time it was going to be different. This time we were prepared. This time the recovery would be minimal. This time, this disease would not completely take over my life.

Or so I thought.

To be continued...

My Life With Crohns So Far... Part 10

Having survived my first surgery, my next step was to retrain myself in a career with a future. It started with an incredibly awful job for a small tech company. Things got better with a job as a phone jockey working at a national long distance company. I worked third shift, so the hours were not great... neither was the pay. But the fact that I was working at all, providing for my family in some way, was a great relief... at least I was doing SOMETHING.

It was during this time that my health took another interesting turn. It started with an ice skating party my daughter attended. I went out on the ice with my daughter and assisted her with keeping her keester off the rink. The next day my ankles were swollen and sore. Since this was the first exercise I had participated in since my surgery, I thought I was just out of shape.

The ankles continued to be sore... slowly other joints in my body started to ache. A few weeks passed and I started to feel nauseous, worn down. I thought I had the flu. The flu was going around work, so that must be it. Then canker sores started appearing in my mouth... ah, it's not the flu, but a virus! Okay, I just have to ride it out.

My appetite dropped considerably as this "virus" was taking weeks to pass. Then a canker sore appeared on one of my eyes and I could no longer wear contacts. This was some virus! I started to lose weight, which I didn't mind because I had gained some unwanted pounds from the side effects of the medicine I took after my surgery. Cool, that's not so bad.

My joints hurt, I had 14 canker sores in my mouth, another one on my eye, my appetite was gone, I was nauseous most of the time, I was losing weight... writing all of these things down at once, it's pretty obvious this was not a virus. But, when it takes months for all of this occur, you don't equate one with the other. My wife started pleading with me to see the doctor. I refused. "It's not Crohns!" I said, "I've had it for 10 years, I know what it's like." And, on some level, I just couldn't mentally bear being sick again. So I entered another state of denial.

My weight continued to drop. I was getting weaker every day. At one point, I could not complete an eight hour day sitting at a desk answering a phone. I would go out to my car during lunch and take a nap, to get through the next four hours. After I'd get off work, I'd go right home and go to sleep.

Things deteriorated quickly after that until one Friday morning... I looked in the mirror and didn't recognize my reflection. I can't explain what that moment was like... you see yourself everyday, yet the person looking back at me wasn't me. It was eerie. My weight had dropped so much that I could see all of my bones. My face was gaunt... I looked like my brother Paul in high school. I knew I was in trouble.

I called Dr. Boyd's office and told them I needed to see him as soon as possible. The earliest opening was Monday morning... I had to wait almost 72 hours. Those 72 hours were terrifying. I spent the weekend in bed. I could feel my organs starting to shut down. I had no energy. I was scared. I was dying.

My wife drove me to the doctors office and, upon looking at my, Dr. Boyd said it was Crohns. I repeated my denial "I've had this for 10 years! I know what Crohns is and this isn't it." He handed me a book. "You can keep it," he said. He flipped open the book and said "Read this." The book was the Crohns and Ulcerative Colitis Handbook. The chapter was called Secondary Symptoms of Crohns. As I read the list, one by one, I checked them off. I got this, I got that, I have this too. I simply looked up, defeated. I should have listened to my wife months ago.

Dr. Boyd took some of my blood and put me on prednisone again, to get my appetite back. Every time you take prednisone, it’s kinda like being pregnant. You have urges for different foods each time you take it. One time it was Oreos. Another it was scrambled eggs. This time it was Cocoa Puffs.

Upon my return to the doctors office for my follow up, Dr. Boyd held my chart in his hands and looked at my wife and me, perplexed. He started, with his smooth Southern drawl, "You know, Pete, your blood work showed that your liver function response was extremely abnormal. It was so odd I had to look it up. The only literature I could find was an African study. You were so emaciated that your liver response was equal to starving children in Ethiopia."

My wife slugged my arm. "I told you to see the doctor! Listen to me next time!" she reiterated. She then turned to Dr. Boyd, "All he wants to eat is Cocoa Puffs. Shouldn't he be eating fruits and vegetables?" The doctor responded "He just needs calories. I don't care how. At this point, he just needs calories."

Ethiopian children... geez. I had almost starved myself to death. What else was this disease going to do to me? What other challenges was it going to throw my way? My faith remained strong, however. I continued to offer up my illness to God so that my suffering could be used for his greater good. But, just how much suffering did God expect me to take?

My weight eventually came back... most of it. My wife had always been pleased with the way God had created my derriere. During this last event, however, I not only lost fat, but muscle mass. Much to my wife's chagrin, my buttocks have never looked the same. This baby has no longer got back.

I slowly moved up the food chain at work and things were looking good... except the five year clock was ticking and another surgery was inevitable.

To be continued...

My Life With Crohns So Far... Part 9

At this point in my life, Crohns had almost killed me two times. I was working a low paying job and living with my in-laws. I was on the mend from my surgery and moving up the food chain at work.

During all of this time, I tried to be a good soldier for the Lord. Over the past few years of my marriage I've had to give up my career dreams, my chronic illness had debilitated me, I had to move into my in-laws and I could no longer provide for my family.

I had had enough.

One late night in February, sitting in my father-in-laws recliner, I had a come to Jesus meeting... literally. God has given us the emotion of anger, so I have never been shy with the Lord when things have displeased me. It takes a lot to get me angry, but when I'm angry, I express it. In my prayer I started yelling at God. "I've had it! I can't do this anymore! How much more do you want from me? You've taken almost everything from me! I don't have my dreams! I don't have my career! I don't have my health! I can't provide for my family! I'm all alone! I'm ashamed to look in my children's eyes! I'm an embarrassment for my wife! I have nothing! Nothing! And I'm tired of it!" The rant continued for an hour. I then went to bed.

The next morning, I told my wife that I yelled at God for an hour. She didn't think that was a good idea. I said "I told God that if things weren't better by the end of next month, we'd have problems." "What does that mean?" she asked. "I don't know. I've done everything He's asked me, but I can't take it anymore. If He loves me, respects me, He'll answer this prayer. If He doesn't... then..." I couldn't finish the sentence. I didn't want to verbalize what such a denial would mean to my lifelong faith.

Things improved quickly. Within the next few weeks we found a condo that was affordable to rent and, for all intents and purposes, was perfect. As we were signing the lease, I looked down and began to laugh to myself. "What is it?" my wife asked. "God just called me a fool" I replied. Next to my signature was the date... April 1st. April Fools Day. In a very subtle way, God both answered my prayers with a Yes and let me know I was foolish for giving Him an ultimatum.

I would never do it again... well, only one more time.

To be continued...

My Life With Crohns So Far... Part 8

When you face your own potential death, something changes in you. Beyond the greater appreciation of those areas of your life like family, friends and, of all things, health, something else also changes in you. I don't know how to phrase it, but life slows down a bit. Priorities change. You seem stronger and more vulenerable at the same time. You're just never the same again.

The first time Crohns tried to kill me, I wasn't prepared and in denial of the critical nature of my situation. But the second time, that was much harder. It took longer to develop and longer to overcome. I don't know how to say it other than to say that, in the end, you're just different.

By the time I had gotten out of the hospital I had lost my job at Channel 13. So, I was left, living with my in-laws, unemployed, recovering from surgery, without any real prospects working in the industry for which I was trained. Things were not looking good.

And there is something about being a man, about being a father, more than any societal or internal pressure... there is something instinctual about a man's role in the family. We are compelled to provide for the family, to hunt the bison, to feed the children. Spending that time with my in-laws was brutal on my psychology. Tatooing the word LOSER to my forehead would have only scratched the surface as to how I felt about myself.

During my years recovering and retraining myself in the computer industry, I was excessively lonely. Other than my parents, for some reason my family did not call me... not once. They never asked me out to dinner or a movie or just to hang out. They got all of their news on me from my parents and left me alone. For years. I have since talked to some of them about this and they said they didn't want to impose on my in-laws. But, it deeply effected my feelings about my family. If they aren't here for me now, then was my childhood all some sort of sick facade? It was devastating.

At one point, one of my older brothers called and I was very excited. Unfortunately, I later found out that reason for the call was because my wife had asked him to... she was worried I was going to commit suicide. That thought never crossed my mind, but apparently my behavior had her that worried. But the fact that, yet again, no one in my family took the time to talk to me... well, the scar cut pretty deep.

I don't remember much of my time with my in-laws. It was so personally painful that I have blocked most of it out as a defense mechanism. About the only thing I remember is the birth of my son. And a surprise 30th birthday party my wife threw me. Other than that, it's pretty sketchy.

As part of my retraining process, I got a job as a phone jockey at a major long distance phone carrier.

By this time, I had felt the symptoms of Crohns for almost 10 years. I knew just about anything there was that could happen when it comes to the disease... or so I thought.

It was at this point that Crohns tried to kill me for the third time.

To be continued...

My Life With Crohns So Far... Part 7

As I lay in the hospital bed, recovering from my first intestinal surgery, I finally began to understand the long physical struggle ahead of me. And keeping the mental health in check during that time was also a struggle. Even my first trip to the hospital in Indiana had not prepared me for the journey I was about to take.

Each day during the first week of recovery, things began to improve relatively quickly. I was up and walking in no time. I was doing my breathing exercises and my stomach was starting to wake up from the anesthesia. Things were looking good.

Then, one morning, I woke up and was excessively tired. I was wheeled down to x-ray for a standard intestinal x-ray. The technician said "Mr. Bauer, I need you to stand over here." I tried to stand up, but couldn't. I didn't have any energy. I couldn't move. "I'm sorry," I said, "I can't. I can't stand up." The technician then had me wheeled back to my room.

As I lay there, I found myself so weak that I couldn't move or feel anything. I couldn't move any muscle. They did a blood gas test, which is a very painful test, and I felt nothing. I couldn't open my eyes. I couldn't move my hands. I couldn't speak. But, I was awake. And I could hear everything around me. I was completely aware.

I remember thinking, "if this is a coma, then this is hell, literally." My parents came in and the doctors gave them some vague idea of my condition. I remember my mom saying, holding back the tears, that we had recently lost her oldest son Joe that past August to an aneurism... her voice trailed off. The doctor reassured her the best he could. I wanted so much to let my Mom and Dad know that I could hear them. That, on some level, I was okay. But I couldn't do anything, couldn't say anything.

I knew my wife was due for a visit and knew her reaction would not be calm. When she entered the room, I heard my Mom immediately say "It's okay. Everything is going to be all right!" My wife immediately responded, "Of course everything is all right! Why wouldn't it be all right?"

I felt so helpless. Everyone was concerned. I was concerned. And I prayed. What else could I do? God was the only one who could hear me.

Dr. Boyd came in later and personally wheeled me in my bed from one test to another. They thought it could be a blood clot in my lung. They thought it could be an infection at the surgery site. They weren't sure and my fever was growing. They decided to pump me full of antibiotics and see if my body would respond.

Apparently word got out because most of my family came to the hospital that night. My wife sat next to me, running her hands through my sweat-saturated hair as the fever was in full force. And, what was weird, was that everyone was talking to me as if I were a baby. It irritated me. I'm not an infant! I just can't move! I know they didn't mean it, but it bothered me. And, in our typical family sense of humor, where the quality of the insult the most valued commodity, my brother Charles told me that, if I didn't get better, that maybe the hospital could fit me with a chair like Captain Pike on the original Star Trek series. One light for Yes, two lights for No. The quality of the joke was high, but in my state, was not appreciated by me.

I started to slip between consciousness and unconsciousness. I was so hot and thirsty that I kept having dreams of diving and swimming in a large, spring fed lake. I can still see the image so clearly in my head. And then I started having the cast of Friends in my dreams, like I was one of the people in the show. Weird.

The next night I listened to the San Francisco 49ers beat up on the San Diego Chargers in the Super Bowl... didn't get to see it, but I did hear it. Eventually, the fever broke and, after another week in the hospital, I was finally discharged. The smell of the fresh air in the hospital parking lot never smelled so sweet.

And that’s the second time Crohns almost killed me. Anyone up for round three?

To be continued...

My Life With Crohns So Far... Part 6

The second time Crohns almost killed me...

When we got married I was working as an actor… which means we were broke. After we were married, I began working in television, which means we were nearly broke. Both meant we didn’t have health insurance. Dr. Boyd was my gastroenterologist at the time. For the first five or so years of him treating me, during my broke and uninsured phase of my life, he never once charged me for his services.

Not once.

I remember saying “look, I’ll pay you something, just let me know.” He looked at me and with his southern-gentleman drawl said “Pete, don’t worry about it. I don’t make money off of patients like you. I’ll let you know when you can start paying.” It was only years later, when I finally got a job with insurance, that I was able to convince him to accept payment. He was an amazing man and an even greater doctor.

He’s the only doctor I've ever met that was never late for an appointment. Actually, that’s not true. Once I had an appointment with him at 2:00 p.m. He entered the examining room at 2:03 p.m. and apologized profusely. I said “I don’t know if you know this, but you’re a doctor! Do you know what that means?” But, he felt my time was as valuable as his. More doctors should hold that opinion.

In any event, as my intestinal scarring continued to grow and as I neared the five year anniversary of my first major attack, just like clockwork, it appeared as though I would need intestinal surgery. At the time I was working for a national cable network in Orlando. I had been married for almost two years and my wife and I were blessed with a 1 & 1/2 yr old daughter. My work hours had become unbearable, working 12-18 hours a day, six days a week for three months. On one of my rare days off I was sitting in the living room with my wife and daughter. At one point, my wife tells my daughter to "go see Daddy" and my daughter walked passed me and over to the phone. She didn't even recognize me as her father. It was at that point that I knew something had to change. Either I could continue to pursue my life-long dream of working in the entertainment industry, or I could be a responsible father and husband. I chose the latter.

We decided to move from Orlando back to the Tampa Bay area. Knowing I didn’t have insurance, my doctor informed me to go to the emergency room where he’d admit me. I should have known that things weren't going to go well, as there were numerous signs, all of which I blissfully ignored. See, my wife and I moved out of Orlando... on Friday, the 13th of January. We were moving to Tampa Bay where I was to take a position at local television station... Channel 13. While I recovered from the surgery, we were going to live with her parents for a short time, so we stored our belongings in a storage facility... we were assigned Unit #13.

So, I go to the emergency room, get admitted into the hospital and after some arguing between my gastroenterologist and the surgeon, they agree to give me the surgery.

Do you know how they find Crohns scarring in your intestines during a resection? Well, they take those internal organs that are in the way and throw ‘em on your chest. They then take your intestines, pinch it through their fingers, and squeeze it through the length of your intestinal tract. They can feel the scar tissue inside, so they pick the beginning, the end, snip, sew, done. Like a cowboy at a colonic rodeo.

After the surgery the wheeled me up to my room and gave my a self-limiting self-medicating morphine button, a device to blow into to keep my lungs from developing pneumonia and a bunch of ice to chew. It was during the recovery where things started to go terribly wrong...

To be continued...

My Life With Crohns So Far... Part 5

One of the benefits of having a chronic illness is that it never goes away… i.e., the term “chronic.” What often happens with Crohns patients is that, at the ileum, over a five year period, ulcers will continue to occur until there is enough scar tissue to cause a complete blockage of the intestinal tract. Other primary symptoms during this process is intestinal swelling, which causes a bloating of the stomach.

So, during the first five years of having Crohns I would have to deal with these intense bouts of intestinal swelling and stomach pain. My intestines would swell shut, but, apparently, the stomach and intestines are not on speaking terms, as the stomach would continue to attempt to move food into the intestinal tract even though it had completed swelled shut. The end result is that pressure would continue to grow in the stomach and I would get more and more bloated. For me, this entire process took about 14 hours of excruciating pain. At the peak, my stomach was so bloated I looked nine months pregnant.

Now, Paul, who had to deal with all of this years before I did, taught me an important lesson. Taking a lead from our mother, who spent our childhood instructing us to offer up our problems to God, Paul said that, when going through these cramping phases, to offer that intense suffering up to God. If you’re going to go through the pain anyway, why not offer it up to God and let him do with it what he wills. Maybe it will decrease the suffering of someone else, maybe you will be rewarded by your faith with greater mercy or grace… I don’t know, but the important thing is not to waste the suffering.

No one knows why God allows suffering. Maybe it’s as simple as that, through suffering, many people are brought to prayer. Maybe suffering is the end result of a series of free will decisions that ended badly. Who knows? Paul’s point was to offer the suffering Crohns was giving us to God as a sacrifice. So, when these waves of intestinal bloating and cramping would hit, I would offer it up to God. In the most basic sense, doing so at least gave the event some purpose, some greater meaning than me just lying on the bathroom floor counting the seconds until the pain subsided.

About the time when these cramping events became more frequent and intense, my wife and I were now married and she was pregnant with my daughter. I had been going with her to these natural childbirth classes, going over breathing techniques and regulating pain, etc. So, as I’m on the floor one night in the bathroom, I thought to myself, “you know, I’m going to time how long each of these waves of cramping last. I’ll uses these breathing techniques from the childbirth class and see if I can regulate my pain. Plus, I’ll be able to get an idea of what my wife will go through when our daughter enters the world.”

So, I’m lying on the floor and the next wave hits. Click! I hit the timer on my watch and breathe. Breathe. Pain. Breathe. Pain. Breathe. Pain. The pain is so intense I lose all sense of time. Suddenly the pain begins to subside. When it completely dissipates, CLICK! I look at my watch, proudly. Thirty seconds. Thirty seconds! That was it! Thirty measly seconds? I was like “Holy crap!” But I didn’t say crap. “Wow! Giving birth is going to suck!”

Which moves us to the second time Crohns almost killed me.

To be continued...

My Life With Crohns So Far... Part 4

So, my brother has Crohns. I pray to lay the burden of the disease upon me to help him. God says Yes. I end up bleeding profusely at one of my brother's wedding rehearsals. I ended up in a hospital in Indiana, in the emergency room, as the doctors work feverishly to stop the bleeding.

They eventually get me stable. At the end of it all I had I lost something like a pint and a half of blood. I was just about to get a transfusion when the bleeding stopped. So, they admitted me to the Methodist Hospital in Indianapolis and, as it turned out, the only room available was in the Neuro Ward. The Neuro Ward is for people with head or spinal injuries… those poor people!

Now, it's important to understand that I had never been in a hospital before, so I was really nervous. I've never been in a hospital... I'm in a city I’ve never been in.. I'm away from home... Alone... In the Neuro Ward.

By the time I got to my room, it was night and I was weak and exhausted. And as I started to drift off to sleep I suddenly hear a patient down the hall scream in a delusional state “THEY’RE KILLING ME! THEY’RE KILLING ME! OH GOD, HELP ME, THEY'RE KILLING ME!”

That made me feel much better.

All night it was “HELP, THEY’RE KILLING ME!” over and over again. When that finally subsided, every time I would start to nod off to sleep, the nurse would come in, wake me up, take my vitals and draw more blood After a while I’m like, “C’mon! I bled all over the emergency room! Can’t you just get some there?” The nurse smiled and informed me that they needed to make sure the bleeding had stopped and that my blood count was rising.

After a couple of days the sent me home. I missed the wedding and I had forgotten to put film in the camera. So, my parents spent the entire wedding clicking an empty camera only to find out weeks later that no pictures were taken. Fortunately, I had a good excuse.

The docs put me on a whole bunch of meds until I could get home and see a gastroenterologist. The medicine of choice was prednisone. Prednisone is a frickin’ miracle drug! I believe everyone on the planet should be on prednisone for two weeks. In those first two weeks, you become the best person you’ll ever be. Your be extremely creative, extremely efficient… your house will be spotless, a stream of consciousness of great ideas will just flow through you. You are at the pinnacle of your existence.

Then, after two weeks, the side effects start to appear. See, there’s this little button in your brain that, when pushed, tells you you’re hungry. Well, when you’re on prednisone it’s suddenly as if a computer gamer is hitting that button with blazing speed, as if his chance to become ruler of the gaming universe depended on it. You are always hungry. And you rarely sleep. I remember waking up from an excessive four hours of sleep with the idea that I was in desperate need of a six egg cheese omelet. Which, by the way, I followed up with an entire pack of Oreo cookies and milk. And my brain was telling me I was still hungry!

Another side effect of prolonged prednisone usage is intense indigestion. So, you’re always hungry and you’ve got volcanic indigestion! A great combination! And you retain water. And you gain weight. And your face blows up like a balloon. And you’ll have unpredictable and offensive mood swings. And your sweat gets really thick. And your hair is always greasy. And you lose hair on your head and gain it elsewhere on your body where God did not intend it! And you’re covered with pimples.

In other words, you become extremely sexy!

To be continued...

My Life With Crohns So Far... Part 3

Now, my brother Paul has had Crohns for years. My brother Charles and I pray to God to give the disease to each of us if it would make Paul better... yes, ignorance is bliss.

And, the Lord said Yes to that request... to me.

The year is 1989 and I'm now 23 and a recent graduate of the University of Florida with a Bachelors of Fine Arts. I'm a semi-employed actor and I join my mother, father and niece Katie on a trek to Indiana to attend and take pictures at my oldest brother Joseph's second marriage.

While we were at the wedding rehearsal, I started to feel nauseaus, so I went to the restroom at the back of the church and it turned out I was having massive internal bleeding from my intestines. Never having seen anything like this before, I get my Dad and ask him if it was normal. I’ll never forget... he looked into the bathroom, then to the priest and said calmly “Where’s the nearest hospital?”

I lay down in the back of my Dad’s car and off to the hospital we go. Being children of the depression and young adults during World War II, my parents are notoriously frugal. So, I’m lying in the back seat, feeling the pressure of the blood building up within me and my Dad says “Pete, I’m just going to drop you off at the emergency entrance. If I sign you in, then they’ll bill my insurance.” Considering I was in no position to argue, I agreed.

So, we arrive at the hospital and I walk into the emergency room. I was feeling very light headed as I staggered up to the receptionist. I said “hi, my name is Pete Bauer and I’m bleeding internally.” The receptionist responded “is that B-O-W-E-R?”

Now, when I was a kid, at the beginning of every school year the homeroom teachers would go through the class roll. “Anderson” – “here”, “Banks” – “here” and then they’d come to me… “Bow… boy… boyuer, baver…” And I’d always have to say “Bauer!” So, when the receptionist asked me to spell my name, in that millisecond I remember asking God... “God, of all times, couldn’t she have guessed my name right!?”

I responded “no, B-A-U-E-R and I think I’m going to pass out.” And, apparently, I did! I felt this great release, like I was floating, angelic almost. It was awesome. Then, the next thing I know some nurse is beating the crap out of my face, slapping me repeatedly. I’m on a gurney being wheeled quickly into the emergency room.

Hint: If you want to get into the emergency room quickly, pass out! Trust me on this one.

The lights on the ceiling were flashing by, like in the movies, while this nurse smacks me repeatedly in the face saying “Mr. Bauer, are you with us! Are you with us!” I said Yes as we arrived in the emergency room.

Within minutes, doctors were swarming around me, prodding, poking, asking a million questions at once. It was something right out of “ER.” I told them I had a brother who had Crohns and they kept prodding and poking and asking. And, you know, I remember thinking, “wow, this is one of those serious situations you read about.” And I always wondered how I would handle a crisis. And you know what? I’m funny! I was joking left and right. I was on fire! When in a crisis, I make jokes! Good to know.

At one point, I’m getting a little perturbed because all of these nurses and doctors aren’t appreciating just how “on” I am! So, I finally say “you know, this is some of my best stuff!” The doctor simply looked at me and said “Mr. Bauer, we’re trying to save your life.” “Oh, well then, proceed.” I mean, if it’s that important to you!

To be continued...

My Life With Crohns So Far... Part 2

So, my brother Paul has had Crohns for years (misdiagnosed) and his health has deteriorated. My brother Charles and I stay late after church youth group one night and ask God to give us the disease if it would make Paul better. At that moment, God ended up saying Yes to one of us.

Like any other parent, God answers our prayers with Yes, No and Maybe Laters. The fact that He answers us at all is amazing to me. When I was growing up I had a really cool poster on my wall. See, my parents used to get the National Geographic and every once and a while they'd have these really cool pull-out posters inside. The one I had on my wall was a picture of the known universe at that time.

It started, in one corner of the poster, with a box with a picture of our planet with the sun. And that box zoomed out and was part of another box that showed our planet in the solar system. And that box zoomed out to show our solar system in our section of the Milky Way galaxy. And that box zoomed out to show the entire Milky Way galaxy. And that box zoomed out to show our galaxy in cluster of galaxies. And that box zoomed out to show our cluster of galaxies in a super cluster of galaxies. And that box zoomed out and showed those super clusters in a group of other super clusters. And that box zoomed out to the known universe. And I remember trying really hard to understand just how massive the universe was… it was so hard to grasp the enormity of it all.

Years later, after the Hubble telescope went up into space, in the paper there was a picture taken of these two spiral galaxies colliding. And the article said it would take billions of years for the collision to complete. And I remember thinking back to that poster on the wall and I thought, “not only does God understand all the complexities of these two galaxies colliding, but it will happen all within his timeframe. He can comprehend billions of years the way we comprehend seconds in a day.” And it occurred to me how amazing it is that, considering all the God understands and how infinite his time, that in this section of our universe, in our section of the galaxy, in our section of the solar system, in this little square on a little planet, that God loves me enough to listen to my every prayer every minute, every day.

It is so hard to grasp the enormity of his love for us.

So, I found it funny that, out of all of the moments in the universe, God chose that one moment, where I asked for my brother’s illness, for Him to not only listen, but to say Yes! We often treat God like Santa Clause… “I want a new bike,” “I want a new job,” “I want a new relationship…” And out of all of the things that I had asked God for up to that point in my life, it was that request to which the Lord actually said Yes!

I sometimes think that, maybe, when we think God isn’t listening, he’s just over looking at those colliding galaxies. By the time he looks back and says “I’m sorry, you said something?” six years had passed…

...to 1989... and I'm now 23.

To be continued...

My Life With Crohns So Far... Part 1

My experiences with Crohns disease has often been a humorous journey, so I thought I'd capture some of the highlights in a multi-part series. I hope you enjoy the ride.

Crohns… What is it? Crohns is an intestinal disorder that can cause bleeding ulcers, intestinal swelling, scar tissue, blockage and a multitude of other issues. It usually attacks at the Ileum, where the small and large intestine meet, but it can occur anywhere from your intake to your output.

It's funny... they say that Crohns doesn’t kill you. Instead, they say that the symptoms of Crohns can kill you. In any event, either Crohns or its symptoms have almost killed me four times.

I'm the last child in a family of eight. The last three of us, Paul, Charles and I, are all close knit and close in age. My brother Paul got Crohns in the late 70's while he was in high school. It was misdiagnosed for quite some time and his health continued to deteriorate. He got so sick that, in his prom pictures, he looked as if he was a concentration camp survivor. When he was able to keep his meals down, after dinner he would lay over an ottoman and ask one of us to rub his lower back... it made him feel better. When you touched his back it was just skin and bone. He was so, so sick.

Paul rarely complained. He kept his sickness primarily to himself. Sure, it impacted the family, but he never tried to leverage it for attention or other personal gain. He suffered in silence.

All three of us were very involved with our church youth group. As Paul got more and more sick, Charles and I were getting really concerned about his health. So, one night, after youth group Charles and I sat and prayed about it... just the two of us. We prayed that the Lord would heal Paul. We even prayed for God to give us the disease. Paul was always a notorious bookworm and Charles and I were much more athletic... we could handle the disease. No problem!

About nine years later I got Crohns. And Charles... well either he didn't mean it when we prayed or he made a pact with Satan because he's one of the healthiest people I know. Of course, he now has eleven children, so maybe we’re even.

To be continued...