It’s been a long journey of discovery in how to live with both lupus and Crohn’s Disease. Both of these are autoimmune disorders that wreak havoc with the body’s connective tissues, and in some cases cause death. Because these are incurable and little understood disorders, it has taken major proactiveness on my part in learning how best to cope with the almost constant pain and fatigue they carry with them.
I was first diagnosed with Crohn’s Disease in the early ’70’s. I had been losing weight steadily, and was wracked with severe abdominal pains. My doctor had told me most likely I was suffering from “housewives” syndrome, which he blithely claimed was common among high strung women such as myself. That changed dramatically, when one night bent double with pain, I found I was hemorrhaging badly from my rectum. Admitted to the hospital from the emergency room, I was told I had cancer of the colon, and scheduled for surgery. When I awoke, I was told I had Crohn’s Disease, and that it would require lifelong treatment. They had to remove a large piece of colon that was completely blocked by the thickening so common in Crohn’s.
The next few years were a nightmare of tests, surgeries and medications more toxic in some cases, than the disease itself. I had started researching everything I could find about this disease, and was horrified to learn that there wasn’t much that could be done. There was this enormous well of rage and a good dose of self pity in me during those early years. Rage that the supposedly best medical system in the world couldn’t do better, or even answer how or why a person got an autoimmune disorder.
Crohn’s Disease involves the digestive tract, from the esophagus to the small bowel. It causes pain, fever, and diarrhea. It can also affect the joints and the eyes, leading to blindness. When it attacks the colon and bowel, it thickens the walls with inflamed tissue, which if left unchecked, can lead to intestinal blockages, which are life threatening. The mechanism for it is the same for all of the autoimmune disorders-the body turns on itself.
In a normal system, if a person experiences a wound or an illness, the T cells and white cells react as antigens which attack the diseased or damaged area, then shut themselves off. In autoimmune disorders, there is a failure to turn off this immune response, resulting in damage that continues, unless through medications it is modified. Most of the drugs used are geared toward damping the response down to healthier levels. Imuran, cyclosporin, Plaquenil, azothioprine and prednisone are often used. All of them have unpleasant side effects, much like those experienced in chemotherapy.
After multiple surgeries, and a rash of severe reactions, I made a decision not to use toxins to treat this disease. Most importantly, I refused to let myself be defined by it. I am much more than the sum of this disease, and refused to give in to it.
About the time I had finally adjusted to living with Crohn’s, I began feeling very ill in an odd way. My throat hurt so bad I couldn’t eat nor could I swallow anything but ice water. I developed a pain in my right ribs so severe I couldn’t walk for a week. The fatigue hit me so badly, I called it “crash and burn”. Once it started, I had to lie down, where I’d fall into such a deep sleep, I heard nothing. After 3 weeks of this, I went to my internist, who ran tests, including an ANA (anti-nuclear antigen). When he called me in the following week, he was in tears, and told me I had SLE (systemic lupus erythematosis). I sat there numb, hardly believing I had not one, but two of these strange disorders.
Still struggling, along with my husband to come to terms with this latest happy bit of news, I immediately began researching everything known about SLE. I discovered it’s not uncommon for patients with certain autoimmune disorders to have more than one. And in that case it is considered a mixed blessing. The thinking being having mixed connective tissue disorder is often less lethal than having just one. HA! The only blessing I saw was for the pharmaceutical companies that love to do clinical trials on us.
After long talks with my family and others who cope with these disorders, I made a momentous decision. No more cytotoxins or other drugs, save for those that eased the symptoms of daily living. No more fighting with the disease, but a day to day journey of learning to live with it, without impacting everyone around me. This was no easy decision, for SLE attacks the heart, the kidneys, the skin and sometimes the brain. But for me and my family it has turned out to be the right decision.
I started using alternative medicine, including herbal supplements that cause much less side effects, and in most cases have brought me greater relief. I use Co Q- 10 for cardiac support, along with carnitine. Hawthorn for the intermittent claudication of fingers and toes, and an excellent multivitamin daily.
Along with a diet rich in anti-oxidents and exercising to keep joints supple, I bring an attitude of refusing to behave as if I am severely ill with anything.
When I have bad days, instead of fighting it, I relax and try and find things to make life easier. Writing is one of them. Some of my best work has come out of my worst days of pain. Good days are a celebration. They are a little gift of freedom from my old friend-pain. I’ve learned to live for today, knowing tomorrow isn’t promised. To bring the gift of laughter and love to those around me every day-good or bad. Each day I awaken thanking God for the blessing of another day, and every night I thank Him for the gift of these diseases. For through them, my children and others have come to realize that we are only limited by ourselves. Most of all that we have choices when it comes to dealing with the difficult things in life. We can give in to them and die, or we can soldier on and live a life filled with small miracles.