Sarah Nigbor

For someone who hates going to the doctor, I’ve been to enough of them the past three years. Hopefully the merry-go-round of medical fun is coming to a close. I’d really prefer to have something more fun to write about than my medical saga. But that’s been my life.

I never thought I’d be so excited to have a disease – cross that off the bucket list! All kidding aside, it’s just a relief to find out what has been wrong with me, not only the past few years, but most of my life. It was quite a shock when I received the official diagnosis from my rheumatologist at Mayo.

She confirmed that I have ankylosing spondylitis, which is a chronic inflammatory autoimmune disease that primarily affects the spine, plus other large joints. It causes inflammation and stiffness in the joints and ligaments of the spine and hips, as well as other joints such as your ankles/heels and knees. It can also affect other parts of the body, such as your sinuses, eyes, skin and stomach.

When I found out, I cried. I have a long road ahead in figuring out a treatment plan, but I am so incredibly thankful to my team at Mayo for finally figuring this out. At my eye appointment, I hugged my ophthalmologist, because she is the one who listened to me fully, dug into everything and ordered the blood tests that discovered the HLA-B27 gene, which is related to auto-immune diseases. She has helped me battle bouts of iritis/uveitis, which I currently have a flare up right now. I have to put steroid drops in my eye every hour, plus dilate my eye each night to help reduce the swelling of my iris.

Eighteen years ago, I had my first bout with shingles and have gotten them consistently since. Most people get it once, maybe twice: I’ve had it at least 20 times and if you’ve had it, you know how terrible it is. Plus, I started getting it at age 27! It usually affects senior citizens. I've had three sinus surgeries due to recurring polyps. Bouts of iritis/uveitis which affects my ability to see. I thought having stiffness and pain in my lower back and hips was normal, I've had it so long. Since I was 14, I’ve had problems with my inflammation in my ribs, causing the cartilage to feel like it’s on fire. There have been days where I feel so fatigued and like I've been hit by a truck, yet I look like nothing is wrong with me. It’s all been because of this one, invisible disease, that causes my immune system to attack my body.

I always prided myself on being tough and able to work long days doing hard physical work. My grandpa always said I could outwork most men. When all of this started affecting my ability to do things, it was defeating. I've had to rally myself every morning for so long... forcing myself out of bed, telling myself that it will get better as the day goes on, holding out hope that maybe someday I'll feel better. While there is no cure for this, I will be able to manage it.

I thought I was going crazy sometimes. I looked fine, but why did I feel so awful? Now, I know. It's not just getting older or needing to exercise more (though that will help). Now I can attack this thing that has been attacking me. I can’t wait to tackle this new challenge, now that I know what it is I’m facing.

I want to thank all the readers who have reached out to me while I’ve gone through this and moving my mom into an assisted living facility. As Greg Peters wrote a few weeks ago in his column, everyone needs a Clarence (from “It’s a Wonderful Life.”) The people who share their stories with us, the readers, my coworkers – all of you have been an inspiration to me during some dark days. Thank you from the bottom of my heart.