It was the late 1990’s, and the Internet bubble was not yet in danger of bursting. I was in my early thirties, and being an entrepreneur, I had at least four or five start-ups on the go. It was an exciting time, to say the least. Vast fortunes were being made overnight, and it seemed as simple to accumulate one as coining a clever word and throwing a “dot com” after it. My expertise was in financial markets, not technology, but I was on fire. I was on the verge of closing out the largest value transaction in my life to date. The deal was worth more than $200 million and it involved a global insurance company, two billionaires, and a hundred employees all being recruited for a new investment bank. The deal had taken me well over twelve months to pull together and had required constant travel to Asia, Europe, the United States, and then back to Australia.

Putting together a deal like this is a juggling act. All the pieces have to land in the right place at the right time if it’s going to work out. It was my job to be the juggler, and while I had played that role many times before on other deals, those deals were small potatoes in comparison. I stood to earn quite a bit of money if the venture was successful. In July of 1999, the juggling was over, the deal consummated. I was in Los Angeles at the time, and it was time to celebrate. I treated myself to an expensive set of golf clubs, rented a convertible Mustang, and headed down the 405 with the top down to a Four Seasons resort near San Diego. Life was good.

I’d arranged some time with a golf pro on my first day there, and after finishing eighteen holes, I ordered a simple and delicious meal consisting mainly of vegetables to make up for my over-indulgence in the food and drink category over the last few weeks. I went to bed feeling more relaxed than I had in a very long time. However, several hours after falling asleep, I woke up with a strange, tingling sensation all over my body. I switched on the light and saw that my chest and legs were speckled with red, angry-looking welts. I thought perhaps I had poison ivy or some other rash that would soon go away, so I did my best to ignore the whole thing and go back to sleep. By the next morning, the redness had sub-sided and I went out for another round of golf. That evening, though, the welts returned with more ferocity than before. This time my entire body was covered, including my scalp. My hands and feet became blistery and swollen, getting more and more bloated by the minute. When I looked at myself in the mirror, I remember thinking, “I look like the Elephant Man!” Whatever was going on, I knew it wasn’t good. I decided to cut my celebrations short and immediately checked out of the hotel, driving straight to LAX Airport to get the first flight I could back home to Sydney. By this time the welts were so painful that I couldn’t even manage to lift my bag into the overhead compartment on the plane. It was the longest, most uncomfortable flight of my life.

I landed in Sydney, and went right to St. Vincent’s Hospital and checked in. The medical staff was just as clueless as I was about what was causing my symptoms, but they gave me 60 mg of the steroid Prednisone and the outbreak subsided. Within two or three hours the rash almost completely disappeared. Moreover, the Prednisone gave me a bit of a buzz, as if I had consumed two or three energy drinks in a row. Eight hours later, though, the symptoms returned, so I stayed in the hospital, where I remained under observation for the next two weeks. The doctors continued experimenting with my Prednisone dosage, finding that as soon as they reduced it even slightly, the welts and swelling came back. I underwent a battery of tests over the next fourteen days, during which I nearly went stark raving mad out of restlessness and boredom. But even after all that time and attention, no one could tell me anything other than that I had hives that could only be controlled with Prednisone. They told me the condition was “idiopathic:” in other words, they had no idea what was causing it. I left the hospital with my prescription bottles in hand and very little understanding of how much the drug and the disease itself would impact me over the long term, though I was apprised of the side effects. Prednisone works by essentially knocking out pretty much everything in its path, including my urticaria, but not without causing a lot of collateral damage along the way. It’s like the napalm of steroids and used to treat many different problems, such as asthma, various skin diseases, and numerous autoimmune-related problems. As I left the hospital that day in 1999, though, all I cared about was getting back to work and moving on with my life. If I needed Prednisone to make that happen, so be it.



WHY DID I WANT TO GET OFF PREDNISONE SO BADLY?

Prednisone is a corticosteroid. Corticosteroids mimic the effects of the hormones our bodies produce naturally, and in my case, they worked to reduce the symptoms of my urticaria. How? By suppressing my immune system to help control the way the urticaria was causing my immune system to mistakenly attack itself. So what are the possible down sides to short and long-term Prednisone use? That’s where things get sticky:

Fluid retention, including swelling in legs and feet

Weight gain, with possible buildup of fat deposits

Elevated blood pressure Mood swings and depression

Insomnia

Increased risk of infection

Elevated blood sugar, possibly leading to diabetes

Loss of calcium, which can lead to osteoporosis and fractures

Serious eye problems

Cushing’s syndrome (or moon face)

So you can see why I wanted to get myself off Prednisone!

I tried, in the ensuing weeks, to tell myself that the urticaria was actually a short-term anomaly and not a chronic condition, but after a few months of symptoms, I resigned myself to the fact that it was the new reality. I was depressed about it, but also determined not to let it really get me down.

What was my new normal? First of all, it was always being on enough Prednisone to be able to live a “normal” life. I found out that outbreaks could be triggered by even the slightest human contact, such as a handshake or a hug. Just the pressure of gripping a golf club could bring on an attack, as could wearing a backpack, walking on a sandy beach without shoes, or, for that matter, wearing shoes. I couldn’t use an exercise bike at the gym because of the pressure from the seat. Sitting for hours on an airplane was now always excruciating, since the weight of my body on the seat put pressure on my skin, which in turn triggered an outbreak. Attacks could be set off by a lack of sleep, or by sunlight. The physical act of sex became more of a negotiation than a pleasure because the pressure involved could produce a painful outbreak. Girlfriends had to embrace my “low impact” playbook. I remember being glad that my business didn’t involve any heavy lifting or manual labor, as that would have completely ruined me.

One particularly frightening outbreak occurred when I was still very much in denial about the seriousness of my condition.

Before I got sick I used to love getting massages—I still do. After I got sick and massages became more problematic because of the pressure involved, I would always warn the masseuse not to do deep tissue work on me, but every now and then I would still push it and tempt fate because the deep tissue massages felt so good. On one particular occasion, I was having a massage and the masseuse was doing some work on my abdomen, which was particularly tense. At the time, it felt great, and I left the table feeling very relaxed. From there, I rushed off to a tennis match with a girl I was dating at the time, who was named Jemma.

By the way, talking about my condition was not something I often did at that time, particularly when it came to conversations with girls on dates. But on this occasion, I was sitting at the Sydney Olympic Tennis Stadium next to Jemma and was starting to feel some worrisome after-effects from the deep tissue massage. I could detect histamines being released into my stomach, and my body starting to go into shock. Looking back on this now, I realize that for the eight years during which my urticaria was in full bloom, the outbreak that day at the tennis stadium was the worst by far. I was experiencing excruciating stomach cramps, to the point where I wasn’t sure I could stand the pain. I told Jemma what was going on and naturally, she wanted to call an ambulance, but I asked her if she could just get me home to my precious Prednisone. I was worried about the seriousness of the attack and whether I could make it all the way home, but at the same time, I knew the drill: an ambulance would show up, the EMS workers would administer a shot of cortisone which was standard operating procedure in such cases, and I would still be in horrific pain. Going to a nearby drugstore for some Prednisone wasn’t an option, either. You can’t just ask a pharmacist to hand over a dosage of Prednisone; it’s too powerful a drug. I had to get home to my stash. We got to the car and Jemma drove. I was starting to feel like I was drifting in and out of consciousness, but we finally got to my apartment just in the nick of time. I took a dosage of Prednisone, and then passed out for the next twelve hours. Jemma sat next to my bed and watched me, fearing that I would deteriorate further. By the next morning, I was feeling better, but it wasn’t exactly my idea of a perfect date.

I don’t know if words alone can sufficiently explain how completely debilitating this disease has been for me. Its physical and mental toll has been so complex and wide-ranging that most of the time it was easier to suffer through it in silence than to admit how truly sick I was. I was a professional and financial success, but I was also tipping the scales at 300-plus pounds and taking an increasing number of prescription drugs, led by the Prednisone. My mind and soul were as much of a mess as my body, and I was more and more cognizant of the fact that there was no balance in my life. This is what the whole “hitting bottom” thing is about. My extreme nature had finally caught up with me. I had achieved financial success. I had pulled off big deals in the boardroom. I’d started companies from scratch and yet in health terms, I felt as powerless and defenseless as a boy in a bubble. When I looked in the mirror, I didn’t even recognize who was staring back at me anymore. I looked fifteen years older than I was. I had the kind of gut I’d seen on my roommates at Camp Eden, and boy, wasn’t I sick of people looking down at my stomach, winking, and asking me when the twins were due.

As many times as my extreme personality has gotten me into trouble, I have to admit that it is also a saving grace. It’s what enables me to become very single-minded, particularly when it comes to my own survival. I just refused to stop believing that there was an answer out there somewhere, even if no one had yet found it. I had one clue that I hung on to, one observation that offered a possible insight into the puzzle that was my condition. After nights of over-indulging in food and alcohol, it was clear that my outbreaks became worse. The two things had to be related. I began to suspect that what I put into my body had caused the disease and the solution might be equally straightforward. “You are what you eat,” right? Well, if that were true, I’d better commit to healing my body in the best way I knew—logically, and in my gut (as huge as it was)—I could.