Each individual affected by spondylitis has their own unique story. We at SAA believe that each and every story can be a source of inspiration and empowerment. We’d love your story as well! Send it to us at Programs@spondylitis.org
By Kristin Cornelius
Tuesday, July 31, 2018
Classifying myself as a type A, control freak personality may actually be understating it a bit. So in mid-December of 2015 when we were two days away from closing on our new house and my doctor said, “You’re going off NSAIDS while we try to figure out what is wrong with your stomach,” I thought nothing of it. Boxes need packed, papers needed signed, and furniture had to be moved.
Honestly, it was pretty much my ideal situation. My teaching semester at our local community college had wrapped, Christmas gift wrapping and celebration had to be pulled off, and my husband was content to oblige my highly-scheduled moving plan. Stress was abounding, and I was in my happy place. I thrive in this type of situation.
The stomach bug was diagnosed (seriously, people, it’s not that hard to wash your nasty hands when in public – insert eye roll) but NSAIDS were now a no-no. Too many years of taking fistfuls of them to combat the back pain that, even despite degenerative disc disease, most of the doctors I saw didn’t believe I had because I was “not old enough” to feel that way. Christmas was a successfully behind us, and the unpacking and furniture moving was in full swing.
On December 26th, I was setting up our washer and dryer (see previous admission of being a control freak) when I noticed my thumb joint hurt insanely bad. Shrugging it off, I figured I had stubbed it on a box or something, I went back to hooking up the appliances. My mother was arriving the next day to help with the move, and I had to at least look like the dirty clothes were under control. Her and I are a lot alike – read both huge control freaks – and the next several days were a blur of unpacking and “put that there, no there” commands to my husband and daughter. Thankfully they love me!
But something was wrong. My thumb joint only got worse, and each and every day of the next three days a new joint was in pain. Finger joints, toe and ankle joints, my Achilles’ tendon. By the end of the fourth day, I almost passed out from the pain of trying to stand on my foot while we were doing laundry.
When our daughter started back to school later that week, I came home to an intervention after dropping her off. My mom was extending her stay while my husband had to travel for work. I stubbornly refused. That was the first in a long line of battles I was about to lose, and I am a poor, poor loser. I’ve never grown accustom to losing, and losing gracefully was more than out of the question.
Nonetheless, my mom took me to the doctor where, as a 37-year old, she demanded the doctor do something to figure out what was going on with me. I’m not going to lie, it felt great. Great to have someone who believed me. Great to have someone who could speak the language (my mom had been a nurse for 35 years). Great to have someone who refused to be told no. The doctor sent me to someone else to have my stomach checked to make sure my joint pain and swelling wasn’t connected to Crohn’s disease.
At this appointment, I was lucky to have my husband with me. When the doctor looked at me like I was crazy and started pushing back on the idea of running the tests, I was about to break down in tears. Eight years of fighting doctors by myself had left me horribly defeated. My husband held his hand up to the doctor, stopping him mid-sentence, and said, “You will run the tests. My wife is stronger than you or me when it comes to handling pain, and this is worse than anything you or I could handle. You will run the tests.” And, he did. It wasn’t Crohn’s disease.
I’ve discovered in this battle having a fierce advocate, like my husband has been for me, is the biggest blessing there is.
The rheumatologist was up next.
I made it from the end of December 2015 till March 17, 2016 with flares and inflammation in at least one joint – but often multiple joints – every single day. My rheumatologist appointment was on March 26, 2016. All I could think was are you kidding me? I finally get to the guy I need to see and my body picks then to go back to looking like I’m Healthy Harriet? Walking in to that appointment, I was armed with my journal of every flare (joint, intensity, duration) I had the past three months. After sharing it with him and answering some standard questions, he paused for a minute. Then he asked the one question no one had ever asked me before.
“Does your back pain feel worse in the morning when you first wake up than after you’ve been up and moving for a while?”
“Yes!” The answer came out too enthusiastically, but there it was. Yes. I was always, always worse after laying down. My sleep was horrible, and most nights I just prayed for dawn to get here so I could leave my bed. Truthfully, there was dread in the pit of my stomach every night before I would go to sleep because I knew I was only gearing up to do battle with my pain.
“To me, it sounds like you have Ankylosing Spondylitis. I am certain you do.” He sent me off for x-rays and blood tests, and several weeks later I was back in his office. He was right. When he showed me the films and text results, I cried. Never mind all the terribly scary things I had been reading about it in the weeks since my last visit. I wasn’t crazy. And that felt good. What I was dealing with had a name, and with a name I could regain some control over my life. My Humira injections started by May.
The last two and half years have been unsteady in terms of my remission. I thought I was doing pretty well when last August rolled around and my body decided I had gotten a little bit too cocky. Bam! Four days in the hospital after four days of the most hellacious pain I’ve ever felt, and I’m including childbirth. But, my advocates where at my side the entire time and helped get me back on my feet. Mom came back up to Michigan to make sure she could control what I was wishing I could control at home, and my husband, well, there aren’t words to express all the wonderful things he did for me. Four nights in a hospital chair can be less than ideal accommodations, and I don’t know I would classify myself as a model patient. Soon though, I was back in remission.
It was the doctor using that word which finally made me realize AS was a part of who I was now. I didn’t need to let it define me, but I could no longer pretend like it wasn’t there. I joined support groups on Facebook, learned as much as I could about the disease, and set to work on controlling what I could. My journey has been one of learning how to listen to my body, admitting when I'm just too tired or in too much pain to do something, and starting to say “no” to some of the things that I would love to say “yes” to but will bring with it the type of stress likely to take me out of remission.
Oh, and exercise. Yes, moving more does actually seem to work – for me – so I try to make sure I’m active. After some research, my husband also suggested cleaning up my diet might be beneficial too, but when he mentioned cutting back on the pizza I stopped the conversation there.
I may have AS, but let’s not get crazy now.
Part of sharing my story is also admitting I don’t have it all figured out. Yeah, I love to be in control, but as anyone who fights this condition knows you don’t always have the last word. So I will fight, today, tomorrow, and every day.
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