The Long Road Home

Story by Jason Baetz

My name is Jason Baetz and I am currently 20 years old and from Kitchener. I was diagnosed with lupus seven years ago at age 13. I have learned to cope with the everyday challenges of living with lupus.

As a child, I remember suffering from awful headaches, nausea, achy joints, burning skin, skin rashes and fevers that were difficult to break. Anytime my family addressed their concerns about my health issues, the physicians always told us that I had a virus or was experiencing growing pains.

Lupus or systemic lupus erythematosus (SLE) is a chronic autoimmune illness that can cause inflammation to any part of your body. In lupus, the immune system loses its ability to tell the difference between other substances and its own tissues. As a result, the immune system produces antibodies which attack your tissues.

In 2000, I was diagnosed with lupus affecting my kidneys by a physician at the Mc Master Children’s Hospital in Hamilton. At the time of diagnosis, I had stiff joints, 105-107 degree fevers, skin rashes, burning skin, headaches, high blood pressure and swelling in my lower extremities. My lupus was put into remission for about two years with successful treatment of an immunosuppressant drug called cellcept and prednisone.

In October 2003, I had a major setback with a serious flare of my lupus affecting my central nervous system. The MRI revealed severe inflammation of my hindbrain, brainstem, spine, eyes, ears and my bones. After spending a week in a Kitchener hospital I was taken to the Children’s Hospital of Western Ontario by ambulance in critical care with severely diminished vital signs. My chance of surviving or even walking again was very low. I was kept in the pediatric critical care unit for a number of days and started on high doses of IV prednisone. Fortunately, after being hospitalized for several weeks the swelling came down and once again I had the chance to go home and pursue my dreams.

Today I have a number of physical challenges stemming from my CNS involvement. I have low vision, chronic back pain, poor sensation, reduced hearing, weakness and greatly reduced mobility. In addition, I have also developed Raynauds Phenomenon which affects the extremities.

Over the past two and a half years the problems did not end. I had severe abdominal pain when eating or drinking, nausea and substantial weight loss, as well as the usual lupus symptoms. In 2005, I finally found an immunologist and an internal physician who took me seriously at Mc Master Hospital after outgrowing pediatric care. My abdominal pain was diagnosed as chronic pancreatitis and gallbladder disease. For treatment I take pancreatic enzymes with every meal, greatly limit fat intake and had my gallbladder removed this past July. Currently for treatment of my lupus I am on a steroid sparing drug called Imuran and a moderate dose of prednisone and doing much better.

For me, a diet low in fat and high in fibre and carbohydrates works the best for me. Remember to be persistent with your physicians when you know something is wrong and that lupus treatment needs to be individualized. Always advocate for yourself and have your physical needs accommodated at school. These accommodations could include help from a note taker, enlarged text, writing tests in a separate room, or extensions for illness.

This past June I graduated from high school with an 89.6% average and I was awarded several scholarships. I recently started my honours Bachelor of Arts at the University of Waterloo, and will be majoring in English along with a specialization in developmental psychology. With my education I plan to help others deal with their individual challenges and advocate for their needs.

Despite having lupus, I have been able to achieve anything I have set out to. Ultimately, your ability to accept your illness and its challenges influences how well you will do in life. My advice to anyone living with lupus is to find ways to deal with the daily challenges of having a chronic illness and remain as strong as possible through tough times. I know that you can achieve anything that you put your mind to, as I am living proof of these endless accomplishments.

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