My name is Nicole Kalnicki and I am 27 years old. Five years ago, I was physically “normal” as far as I was aware of. I had one doctor, almost no medication to speak of, and nothing remarkable in my medical records besides long-term insomnia.
That was five years ago.
Today, I not only see a primary care physician but also a rheumatologist, dermatologist, and a gastroenterologist. I am on 14 medications (that number tends to fluctuate throughout the year), and I have been diagnosed not only with Ankylosing Spondylitis but also Psoriatic Arthritis, Fibromyalgia, Myalgic Encephelomyelitis and the host of additional problems associated with these diseases.
On top of this, I was just told a few days ago by my rheumatologist that she suspects I may have Crohn’s disease.
Five years. In five years, my body has betrayed me. It has made me feel as though my future has been destroyed. As though any chance of a future is a dream I will never realize.
Five years ago, I was in a community college, working hard to ensure I could transfer to a good university and secure enough financial aid to pay for my tuition. I didn’t have the money to pay for any of it myself, so I knew what it would take to get that money: outstanding grades, extracurricular activities, academic honors and achievements. And I accomplished it all. By the end of my two-year stint I had amassed an impressive curriculum vitae for a community college education. Not only was I accepted at the university I wanted, I was given every bit of financial aid possible: loans scholarships, grants, and work study.
It wasn’t enough. I fell well short of what I needed to pay, about $20,000 short. I wanted to try again the following semester. I had meant to. But my body was beginning to show signs of betrayal.
I was first diagnosed with Fibromyalgia in early 2009. Already for well over a year I had been experiencing pain and fatigue, increased migraines and painful abdominal symptoms. My doctor put me on Lyrica, but just to make sure she was covering her bases, referred me to a rheumatologist to rule out other diseases such as arthritis, Lupus, and Lyme disease. I thought it was no big deal, this rheumatologist was going to clear me, I was going to just be treated for Fibro.
It was going to be no big deal.
I was so, so wrong.
He did a number of physical examinations with me, as well as two MRIs and a blood test to see if I had the HLA-B27 gene (which I tested negative for). Though the gene test was negative (apparently not everyone with AS has it, just most), my rheumatologist diagnosed me with Ankylosing Spondylitis.
He had to be wrong. He just had to be.
I denied it to myself at first. The obvious indicator being that I was not positive for HLA-B27. But over time, the pain started settling in, the damage started being done. Pain in a very new place that I had never known of before cropped up in a very real, very obvious way. Pain in the SI joints. I had never experienced pain like that before. Coupled with the pain in my lumbar spine, many days are next to impossible to get through. The pain has progressed to my hip bones, creating a very deep, very excruciating band of pain around the entire area. It stretches across, encircling me, like a torture device.
And I cannot get away from it. Ever.
Over the next year, as I was trying my luck with Enbrel, a new and frightening symptom reared its ugly head: psoriasis. At first, they believed it to be a side effect of the Enbrel. I had to go see a dermatologist and I began a long and painful battle to get the psoriasis on my palms and feet under control. It wasn’t until early 2011 that I was told I had Psoriatic Arthritis, because of the progressive arthritis in joints in my hands, feet, knees, ankles, and neck. Not that this replaced my AS diagnosis. No, this was just on top of that. Which was all on top of the Fibromyalgia and M.E.
No diagnosis has ever replaced another. The worst part? They are all so real.
They had taken me off the Enbrel by that time and put me on Humira. And not long after, I finally spoke up about my stomach pains. I was getting worried by this point. They had gotten progressively worse over the last 3 years and other more frightening symptoms were developing. Was this because of the M.E. (IBS is a major symptom)? Or a sign of a new, more serious problem? My PCP referred me to a gastroenterologist who ran some blood tests and found out I had C-Diff, an intestinal infection. He treated me for that, but the pains never went away. As of this date, I have no definitive answer as to what’s wrong, but my rheumatologist has warned me to get a colonoscopy. She believes I have Crohn’s disease, not only because of my symptoms, but because there is a high correlation between AS and Crohn’s.
I cannot deal with this.
Not another disease.
No more pain.
When I was in school, I saw a future for myself, a future that was something to look forward to. Now I see a future filled with pain. Nothing but pain. I can’t go back to school now, even if I did get enough financial aid. I can barely handle the 12 hour work weeks I put in, how can I handle that and school? How will I become anything more than I am, when Fibromyalgia and M.E. have wreaked havoc on my brain’s cognitive functioning and my body is nothing more than arthritis and a bundle of nerves, painful nerves?
Will I ever have a pain-free day again? Am I stuck this way? Is this the perfect metaphor for what my spine will do to me later on in my life? Can it be
different? Is it too late?
It’s never too late. Even I know that.
New York United States of America