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1992-2006

In the fall of 1992, I headed to the University of Illinois for my freshman year of college. I roomed with one of my closest friends, Stacy, and had the time of my life. We did typical college things like go to bars and parties, but my favorite memories are from the time we spent in our little room on the 10^th floor of our dorm. Stacy and I devoted many hours to making up hilarious answering machine messages, watching reruns of Little House on The Prairie, and choreographing our own dance routines.

While home on spring vacation my freshman year of college, I had the same battery of tests run that had always been done every six months since my scleroderma diagnosis nine years earlier. These tests had become such a routine for me that it never occurred to me to question why they were being done. I realize it was dense of me to reach the age of 19 never having wondered what exactly they were testing for when they performed blood tests, urinalysis, pulmonary function tests, chest X-rays, echocardiograms, and barium swallows. I had transformed from a child to a young adult, yet I was still going to all these appointments with my mother, and she would still answer all of the doctor’s questions for me. I was diagnosed in 1985, long before you could Google anything you wanted to know. All I knew about scleroderma was what my mom had told me. Aside from telling me to put Neosporin on my oozing calcification deposits, my mom had told me very little. (My mom thinks Neosporin fixes everything—like the dad in My Big Fat Greek Wedding, who thinks Windex cures all ailments.)

During this particular battery of tests, it was determined that my lung capacity was significantly reduced and some sclerosis (hardening) was found on my lungs. The doctor suggested that I drop out of college immediately so that I could undergo intensive treatment (similar to chemotherapy), to stop further progression of the disease. She explained that if I did not undergo this therapy, the scleroderma would surely progress, and I would become “very sick.” I recall the doctor’s last words being spoken to my mother, “If this were my daughter, I would want her to have this therapy immediately.”

I had just been steamrolled. What was this doctor talking about? I wasn’t sick! My skin condition was no big deal! I just had tighter skin than everybody else, right? We left the doctor’s office and rode up the elevator to see my regular physician. For once, I was alone in a doctor’s office without my mother. She was probably off somewhere making panicked phone calls.

My doctor gently explained to me, “There is a possibility that your scleroderma is getting worse and beginning to affect your internal organs. This could lead to sclerosis of the esophagus, lungs, heart, and liver. Lisa, this would significantly impact your ability to eat and breathe, and may also impact your kidney function.”

“Well, what does that really mean? I mean, could I die from scleroderma? Do people die from scleroderma?”

“While new medications are being explored all the time, most people with systemic scleroderma do not survive more than seven years due to the toll the disease takes on all of their major organs.”

Tears slowly trickled down my face, as so many realizations hit me all at once. My doctor looked at me in awe and asked, “Is this the first time anyone has ever told you this?” I nodded my head yes, unable to speak with the millions of horrible thoughts whirling around in my head.

I told my mother I would meet her at home later, left the doctor’s office, and headed straight for the public library. I had grown up going to this beloved place every week. I had sat on the red pillows in the children’s section and listened to story hour. I had checked out books and records and magazines. I loved the library and always got a warm feeling when I entered the big, old building. That day, I was fighting back tears and desperately trying to swallow the melon-sized lump that had formed in my throat. Shaking, I typed the word “scleroderma” into the computer and waited for the results. I found seven articles on the subject and quickly retrieved each one from the microfiche archives.

I read each article over and over. Every one depicted scleroderma as a horrifying disease where people looked completely mangled, lost their hair, needed oxygen tanks to breathe, experienced kidney failure, and couldn’t fit a toothbrush in their mouths. Of course, some of the articles did mention that there were varying degrees of scleroderma and some experimental treatments, but this did not apply to me. I was going to get progressively worse, look like a walking skeleton, and eventually die. I would never get married, have children, be a teacher, travel, or enjoy life in a normal capacity. I could feel it becoming difficult to breathe. See? My express train to doom had already left the station.

That night, on the phone with a close friend, I wept while I repeatedly declared, “I’m going to be so sick.” I cried in my room for hours. It was the kind of crying I did silently so no one would hear me, and my entire body shook with sheer fear like I had never known before. I envisioned myself dropping out of school, checking into the hospital, and never checking out. What an idiot I had been! How could I never have questioned why I was having all those tests done? Did I not have a brain in my head? How could it never have occurred to me to ask more questions about scleroderma?

Halfway through the night, I crawled into bed with my sister, Heidi. She held me as I wept and told me it would all be okay. I knew she was wrong. It would never be okay again; doctors know what they are talking about. They don’t tell you you’re going to be sick if you are just fine! The next morning, I woke up with a sore throat, tear-stained face, and the overwhelming feeling that I had just been run over by a train. My mother informed me that we were going downtown to see a new doctor, Dr. Brown.

 Downtown, Dr. Brown—that rhymes! I thought. What was I doing thinking about rhymes when I was dying? I scolded myself the whole way downtown, reminding myself constantly of the misfortune that undoubtedly awaited me. As I sat in the plush, black chair of the waiting room, I began to wonder what my life could have been like if I weren’t going to die.

Dr. Brown calmly told my mother and me that, although my test results did show that the disease had affected me internally, he did not think I needed to drop out of school and head for the nearest hospital. Rather, he would put me on a new medication to see if that would prevent progression of my disease. I was instructed to begin with one pill per day and then slowly work my way up to four. We would run all the tests again in six months and see whether my organs had continued to sclerose, or whether they had remained stable.

My mother, always looking on the bright side, was positive that the new medication would work and I would be fine. That other doctor was just a lunatic alarmist and didn’t know what she was talking about! I headed back to college and returned to the mindless bar-hopping weekends that all freshmen should enjoy. I didn’t share what the doctors told me with anyone at school, except for Stacy and my other close friend, Shana. This was my own way of practicing what I had seen my whole life: denial. In the back of my head, I wondered what would happen when six months were up. Would my test results reveal that I had worsened? Thoughts of the worst outcomes lingered in my mind, but on the outside I pretended everything was fabulous—an art form I had mastered by then.

After six months, my tests revealed that I had remained completely stable. My condition had not improved, but it hadn’t worsened either. The doctors assured me that this was an excellent sign. I would continue to be tested semi-annually, and as long as I remained stable, there was no reason to be alarmed.

Six more months passed, I was still stable. A year, two years, three years… 14 years, and I remained stable. I met the love of my life in college, graduated and became a fourth grade teacher. Dave and I got married and three years later, I gave birth to my son via a scheduled C-section. Although I was considered high-risk, my pregnancy went well and my delivery was uneventful. My baby boy and I went home four days after his birth.

Aside from some gastro issues, I recovered well from my C-section and began my journey on the mystic parenting path, just like everyone else. In 2005, I consulted with both my rheumatologist and high-risk OBGYN, asking them to advise me on having a second child. Both assured me that it was safe to try for another baby. We got pregnant easily and were anxiously anticipating the birth of our baby girl, who was due in May of 2006.

Cue Narrator (remember, this is like an HBO mini-series): Stay tuned for the next episode of Scleroderma: The Mini-Series to find out what happens after the birth of Lisa’s daughter. Of course, if you’ve read Lisa’s other blog entries, this may not be much of a cliffhanger!