Nothing dramatic happened when I started the dreaded prednisone. Not at first, anyway. A pill; a swallow; I moved on with my day. I tried not to think about it, and to just keep eating the Specific Carbohydrate Diet and living my life. I would have to wait and see what happened. This disease was a constant exercise in patience.
Meanwhile, one evening I walked to the park to watch Ron play Frisbee. I had added a daily walk into my life, now that my strength had returned, and this evening I had an actual destination. As I approached, I felt a thrill of excitement. Young people ran and dove in the dusty field, and along the sidelines their teammates stood sweating and cheering, chugging water and swatting mosquitoes away from tanned legs.
These were my friends. This was my old team, with which I’d played for years, before my chronic knee pain had forced me to quit three summers ago. I hadn’t seen them much since. Not only had I quit, but life circumstances had gotten in the way, creating a series of sad reasons why I had already been isolated for years before even getting colitis. First, in the summer of 2012, I was too busy caring for Dad and his cancer to be social. He died in the fall, and in summer 2013 I was still grieving him and not ready to see many friends. Then, this past winter, I’d been relieved to find myself ready to be social again and eagerly looked forward to spring and summer…only to fall sick myself. Now it was the third summer in a row that I was largely spending alone.
So I greeted the team happily, relieved that at last I had the chance to come out. I cheered for the team and got caught up in the energy. Tonight I felt strong and healthy, kicking off my sandals and standing barefoot in the grass. Soon after I arrived, Ron began to score; he scored the last three points and brought the team up from two points behind to win 11-10. I felt like a good luck charm.
Someone suggested heading to the Great Dane Brew Pub. This was typical–the Dane sponsored the Frisbee league and gave each team a free pitcher of beer after each game. (People don’t bat an eye at this tradition in beer-guzzling Wisconsin. In that state, alcohol is present everywhere from the student union building to church potlucks. I once tried to host a “dry” Christmas caroling party, but was thwarted when one friend brought a pony keg and another made the hot chocolate “Russian.”)
I wouldn’t be able to drink with the team tonight, since alcohol is forbidden on the SCD. But I whispered to Ron that I’d brought almond butter in case I got hungry. I could go to the Dane. “Katie’s coming!” he announced, and the others cheered.
Ron and I got into the car. When he turned it on, the stereo blasted a refrain from Tribe Called Quest, Ron’s pre-game pump-up music, and despite the happiness I’d just been feeling, a wave of sadness washed over me. The music flooded me with memories of many evenings like this, before my knee pain and Dad’s cancer and my colitis. Ron and I used to drive to the games and run onto the field together, often arriving late after our field crew job. With our fresh legs and speed, I would feel like the cavalry, coming to rescue the team. When my achy knees began to slow me down, playing wasn’t fun anymore–I was getting scored on. I finally quit altogether, but I had been absent so much since then that I’d forgotten what I was missing.
At the Dane, the waitress put a paper menu in front of me and I watched while everyone else talked for ten minutes about the food they were going to get. I was used to this by now. Until you’re on a restricted diet, you have no idea just how much time people spend talking about food. It made me sadder tonight than it had in a while. It was all so familiar, this ritual, which I had done countless times with this team in the past: playing a game then hitting the Dane, enjoying the food and beer here. I was sitting at the head of the table, so I had an excellent view of them as they chattered happily about reubens and West African peanut stew, and about the game. I felt utterly outside of it all.
By now, Ron had learned how hard such moments could be for me. He asked quietly if I was okay. I shrugged. I guessed I was not yet over the whole not-eating-with-other-people thing. I put on my best happy face as I watched, overlooked by the others.
Here I was, excluded not in one way, but in two. I couldn’t eat with the team because of my colitis, and I couldn’t play with the team because of my knee pain. What terrible luck, that both of these ailments had struck me separately, a double whammy of isolation.
The thought made me pause. After all, were these two ailments really separate?
In The Autoimmune Epidemic, Donna Jackson Nakazawa says that autoimmune conditions often come in clusters–people who suffer from one autoimmune disease are three times more likely to develop other autoimmune diseases. As an ulcerative colitis patient, I am more likely to develop rheumatoid arthritis, multiple sclerosis, or other related conditions. Nakazawa lists more than 100 diseases and disorders that have autoimmune components. The symptoms have similarities. They generally involve inflammation, and many include swollen joints, pain, redness and rashes, or itchiness.
Reading the book, I’d been unnerved to learn that I might develop more conditions, and surprised to discover that I had one of them already.
I have Raynaud’s disease. This disease causes the fingers and toes to turn ghost white in cold temperatures, as the body withdraws circulation. The whiteness is accompanied by stinging pain, and is followed by swelling, redness, and more agonizing pain when the fingers and toes are warmed again. I never knew this was a real, named disease until moving to Wisconsin and hearing a friend talk about it. It explained why, when I cross-country skiied with friends, they all seemed so much tougher than me. I had long assumed everyone else, like me, was powering through terrible pain in the fingers and toes for the first half hour of every foray. It turned out they weren’t.
Growing up in the mild climate of Portland, Oregon, I had only rarely been in temperatures cold enough to freeze my extremities. But when I came to Wisconsin and realized I had Raynaud’s, I remembered a trip to Portland’s Mt. Hood as a young child, where I had whimpered to my mother about the terrible pain in my hands as we got back in the car. She must not have known about Raynaud’s either. “All of our hands are cold, Katie,” she admonished.
Raynaud’s, as I learned from An Epidemic of Absence, is an autoimmune disease. If I’d been educated about autoimmunity as a child–and how could I have been?–I would have seen my Raynaud’s as a clue that I was susceptible to other such diseases as well. Raynaud’s was the first missed clue.
Now that I was educating myself, I wondered if my knee pain might also have an autoimmune component. It fit the bill: chronic, unexplained joint pain. It began around age twenty, and back then I assumed it was from my Kung Fu classes, which involved lots of crouching and squatting and kicking. Several years later, when the pain worsened, I thought it might be from walking around in flip-flops with no arch support for two years in Peace Corps Tanzania. Then my sister developed similar chronic knee pain at around the same age, which she first ascribed to her uphill bike rides to work. Both of us saw various physicians, naturopaths, and physical therapists for our knees over the years. Rest and ice and PT helped. But neither of us ever received an explanation or diagnosis, and both of us had to eventually stop playing sports altogether because of the pain.
By the time I quit Frisbee at age thirty-two, I was sometimes in too much pain to go up and down stairs. I clutched at the railing, wincing and hobbling like an old person. It took a year of physical therapy to build up the strength to walk a mile or two on flat ground without pain again. In the last couple years, slow-jogging two miles on flat ground was the most I could do without triggering more pain.
Food arrived at the Dane and everyone dug into their meals while I twiddled my thumbs and pondered all this. No one seemed to notice that I wasn’t eating, or even to notice me at all. Perhaps they were trying not to make me self-conscious. Depressed and bored, I carefully concocted a cheerful exit, forced a grin and a wave to everyone, and set off for home alone. Downtown Madison was only a mile from our apartment, so I could finish my daily walk now.
As I walked in the fading evening light, I continued mulling over this new thought about my knees and my colitis and autoimmunity. Then I realized that along with colitis, Raynaud’s, and knee pain, I even had a fourth likely autoimmune condition.
This one was on my skin. Around three years ago, the skin on my face had begun to flake. Just delicate little white flakes, like the remnants of a mild sunburn. I assumed my skin was just dry; it was the dead of Wisconsin’s bone-dry winter. I experimented with moisturizers. The flakes returned. Over the following years, I noticed them not just in winter but in summer too, which is hot and muggy in Wisconsin.
As with my other strange ailments, I got used to the flakes. They were embarrassing–I took to looking closely at my face in bathrooms, worried about finding a flake dangling off my chin or out of a nostril. I used drops of water from bathroom sinks to smooth them away. I called them “my flakies” when talking to Ron. Before going out, I’d say, “Do I have any flakies?”
It was only now, with my new awareness of my autoimmune propensity, that I realized the skin flakes, too, could be some autoimmune condition. Psoriasis was a likely culprit. My dad had it, and my friend Alison, who also has proctitis, had it, too.
“If you think about it,” Alison said, “your skin and your colon are connected. Especially your rectum, where proctitis is.” The rectum is at one end of the digestive tract, connected to the outer skin of the body. The mouth is at the other end, connected to the skin of the face. Put that way, both my face and my colon are body surfaces–and perhaps both were inflamed.
I decided to make an appointment with a dermatologist.
I thought of something I’d read recently in Andrew Weil’s Spontaneous Healing, where he describes the way multiple diseases might relate to each other.
I read the writings of a great medical heretic, Samuel Hahnemann (1755-1843), the German prodigy and renegade physician who developed homeopathy… Homeopathy relies on very small doses of highly diluted remedies to catalyze healing responses. I disagree strongly with the many homeopaths who oppose immunization… Nonetheless, I…admire the system for its use of treatments that cannot harm.
One of [Hahnemann’s] most important teachings concerns the danger of suppressing visible symptoms of illness. Hahnemann used the example of an itching, red rash on the skin. Better to have disease on the surface of the body, he taught, because from the surface it can exit outward. Suppressive measures may drive a disease process inward toward more vital organs…
Hahnemann had this insight long before the discovery of corticosteroids, the very powerful anti-inflammatory hormones that conventional doctors now dispense without much thought for the harm they can do. Topical steroids are very effective suppressants of skin rashes and are now even sold over the counter in the United States. Again and again I see patients who become dependent on them… The disease process is not resolved but merely held at bay, gathering power…
What happens to the energies of such suppressed diseases? Where do they go?
Just as Drs. Weil and Hahnemann describe, my own doctor had pushed a corticosteroid on me: prednisone, which I was now taking. I had instinctively resisted it for months. If prednisone worked the way the doctor hoped, it would treat the symptoms but not the cause, and would prevent me from understanding my disease.
But Dr. Weil’s passage even goes a step further. By treating the symptoms but not the cause of a disease, we “suppress” that disease. The implication is that it could then emerge somewhere else in the body.
Was it possible that, all my life, I’d had some deep-down problem, something haywire in me that expressed itself first on that windy winter afternoon on Mt. Hood? Perhaps it emerged again later in my throbbing knees, then as a rash on my face, before striking my colon. If that was the case–if all these minor ailments were related to my colitis–then my current problem went far beyond an imbalance in gut bacteria. I was indeed prone to autoimmunity, and I needed to start thinking about that more and find a way to combat that, too.
Even though I was sad tonight, there was something comforting in all these thoughts. For the first time in my life, I was beginning to piece it all together and look at my ailments holistically. It was not random that I “happened” to have both joint pain and colitis, that I had felt excluded in not one but two ways tonight. It was not random, it turned out, that I happened to be the one with the flaky skin or the intensely painful hands in cold weather. I did not have some curse on me. There was no demon toying with me and giving me awkward physical conditions just to isolate me from my friends. These might all, in a way, be one single condition.
And perhaps Drs. Weil and Hahnemann were right. By suppressing an ailment in one part of the body, rather than treating it, the problem remains and just emerges elsewhere. I had never thought this way before about all my ailments, never tried to find the true root of the problem. It seemed like finally seeing it this way was a step in the right direction.