Looking back, it’s hard to remember a time when I wasn’t in some sort of pain. My family always thought that I was just a complainer- something was always sore. I was told that I had “bad knees” at the age of 13. I had already begun to lose cartilage.
When I began to play lacrosse in high school, I had to have the trainer tape my knees before every practice and game and I seemed ok. I went off to college with minimal issues, they didn’t have a lacrosse team, so I didn’t have to tape my knees for anything. When I worked out at the gym, I was on the elliptical, so I had minimal impact on my knees.
I got through college and battled with depression and my weight, but I made it out pretty much unscathed. I got sick if someone sneezed within twenty-five feet of me, but I chalked it up to living in such close quarters with other kids.
After graduation, I moved back home and I began getting a pain that felt like I was being stabbed in the middle of my left butt cheek. The pain radiated down the back of my thigh and it would leave me limping on good days. On bad days, I couldn’t walk and my mother had to help me up the stairs, help me get dressed, help me bathe, etc… The bad days were pretty few and far between, so much so that I always seemed to forget to tell my general physician.
One time while I was at my doctor’s office, I happened to be limping. It had gotten to the point that I hardly even noticed anymore. My doctor became extremely concerned, being that I was only 22 and was struggling with sciatica pain. He grabbed the sports medicine doctor from the next room and they both examined me. I could see it in their faces that things weren’t adding up. Something was wrong but they didn’t seem to have the answer.My physician decided that I needed to get blood work done, he checked for a lot of things, and my inflammation levels concerned him. He referred me to a rheumatologist.
A few months later, I was able to finally see the rheumatologist, unsure of what she would say. She ordered more blood work after a quick physical examination and told me to follow up when I got my results back. She gave me minimal information; barely spoke to me at all. She terrified me to be honest.
A couple weeks later, I was back in her office, waiting for her to come in and tell me the “news”. She skipped the pleasantries and went straight to, “You have an autoimmune disease called Ankylosing Spondylitis. I want you to start Enbrel. Here is your prescription, you have to inject it. Get checked for TB before you begin.” That was pretty much it. No explanation of what it all meant. No comforting words. No understanding. I walked out of there on the verge on a panic attack. How could I inject myself? Wasn’t there another way to feel better? I had gotten a few cortisone injections into my SI joint by this point but they were lasting shorter and shorter periods of time. What was I going to do? What could I do?
That day I walked out of her office and never returned. I never got a phone call from her office either. Let’s say, it was no love lost.
My general physician was still worried. He knew that she clearly was not a good fit for me as a patient but he wanted me to find another rheumatologist and fast. My symptoms were progressing. My pain was increasing and becoming more constant. I tried my best to hide it from people around me.
I stalled as long as I could. I was so afraid that I would have a similar experience as before and I didn’t want to go through that again. A few years passed, I got some more injections in my spine and SI joints, but they were getting less and less effective. I was taking serious pain pills when I would flare and I knew that I was going to have to find a good doctor.
It was Memorial Day of 2012 that I realized how bad I had gotten. I had just bought my house a few months before and I had my family over for a house warming and Memorial Day party. I was flaring so badly I could barely walk. I had about 20 family members at my house and I was taking pain pills every hour or so just to keep myself from breaking down and crying. I almost fell in front of everyone when my leg gave out. I was in so much pain and I was humiliated that other people had to see me like this.
The next day I looked up a rheumatologist at the Hospital for Special Surgery. I had to wait about two months before my first appointment. When I finally met him, he confirmed that I did indeed have AS. He couldn’t believe how the other rheumy had treated me and said that he wanted to start me on a high dose of daily NSAIDS in hopes that it would decrease my inflammation levels and get things in check. He said that I was going to live a normal life and be ok. My mom had come with me to that appointment and those are the words she still clings onto. I don’t think she heard anything else that entire appointment but those words.
After six months on the NSAIDS, my inflammation levels were a little lower but I was having horrible stomach pains. I knew I had developed an ulcer. Of course, the docs took a bit longer to figure this out. By this time, he had added Humira to my treatment and I wasn’t feeling much different.
I would go on and off prednisone if I was flaring, but my general physician was left trying to interpret what my rheumy wanted me to do. Because I live in Central New Jersey, I wasn’t able to see my rheumy often, so we communicate mainly via email. He relies heavily on my GP prescribing me what I need (other than the biologics).
My stomach pain got to the point where my GP and rheumy decided I needed to see a gastro. The gastro ordered an endoscopy the next day and discovered an esophageal ulcer (which I knew was there). I’ve been on Prilosec and off all NSAIDS since then.
Over the last two years, since I’ve been seeing my HSS rheumy, I’ve changed from NSAIDS to Humira, toCimzia, and now I’m on my third month of Simponi. I’m going to physical therapy as often as my insurance will allow me. I’ve gotten a personal trainer and I’m trying my best to keep moving and healthy. I’ve gone gluten-free in hopes it would reduce my inflammation, not sure if there’s much of a difference. I’m on and off prednisone for flares, I take Percocet when I’m in too much pain, but I try to stay away from it as much as I can.
This past winter I went to the ER twice because I was in so much pain. I feel like I’m sort of in limbo. I’m 28, I’m an elementary school teacher, I live alone, and some days it takes everything in me just to get out of bed. My family tries to be supportive, but it’s hard. I’m thankful that I found the Faces of AS group on Facebook because I don’t feel alone anymore. There are so many people out there going through the same things as me. I want to thank all of you for showing me that it’s ok to hurt and not want to do anything. It’s ok to want to throw in the towel some days and just lie on my heating pad and do nothing.
Thank you, Cookie, for creating this outlet. Even though I’m in pain, it’s not nearly as lonely as it used to be. You’ve made that possible. I am a face of Ankylosing Spondylitis.
New Jersey, United States of America