My name is Wendy Krulee and I have Ankylosing Spondilitis (AS). I was diagnosed in 2010 at the age of 40 but have experienced symptoms since the age of 12 or 13. I was extremely fatigued all the time, but I think this was chalked up to being a teenager. I also experienced what we thought at the time were growing pains. What I didn’t realize was that growing pains typically occur in the shin area. My pain was deep in my thighs, mostly at night and extremely severe. I now understand this is pain that radiates down my pelvis from my SI joints in to my legs. I also had a lot of lung problems as a child. I experienced chest pain in High School (costochondritis) as well and it ALWAYS hurt to stand up straight. My shoulders wanted to curl forward and it took so much effort to pull them back. I didn’t seek out medical attention until after the birth of my first child. I had terrible sciatica and after the delivery my uterus tilted putting pressure on my pelvis accompanied by horrible fatigue. I just chalked this up to being a new mom. When I finally sought help, I was told that I tested positive for Epstein Barr Virus (EBV) and there was nothing to be done for it. I was prescribed antidepressants for the sleep problems, fatigue, and “cramps”. They didn’t help. I was continually diagnosed with “depression” despite my telling the doctors I wasn’t sad, I was just exhausted and sore. After the birth of my second child at the ripe age of 36, I started experiencing severe hip pain, I was told I had bursitis and was given a cortisone injection in the hip joint which helped with pain for about 6 months. However, I had a huge divot in my hip where the injection was placed. No more shots for me.
It wasn’t until I went through a period of extreme stress (and I guess the stars were aligned) at the age of 40 that I had my first major flare. I couldn’t walk from the pain in my pelvis, back, and legs. I couldn’t feel my feet, they were completely numb. The muscle spasms were uncontrollable and excruciating. It took four long months to figure out what was going on. I happened to stumble in to a new doctor in my small town and she had just had a patient who was diagnosed with AS so my Dr. happened to know what to look for. Finally!
After X-Rays and blood work I was told I had AS, but that it could be “managed”. I sought out a Rheumatologist who also diagnosed me with Fibromalgia and put me on Humira due to my stomach sensitivity to NSAIDS. I was doing well on the Humira until I’d been on it for about nine months. For some reason, nine months in to the shots I had a horrible allergic reaction. I developed chronic Uticaria from head to toe. I swelled up and I had hives inside my eyelids, inside my ears, on the palms of my hands, bottoms of my feet and everywhere in between. I also had an interesting purple zebra stripe pattern on my torso. In short, I was absolutely miserable and there was no way to make it stop other than Prednisone. I had to stay on high doses of prednisone to suppress the allergic reaction for approximately 6 months while waiting for whatever it was to work its’ way out of my system. It finally did. Unfortunately by that time, I had put on about 25 to 30 lbs and could barely move. Prednisone also does crazy things to the mind when one is on it for extended periods of time. I hate that stuff!
Here I am, almost four years after diagnosis. I guess you could say I’m managing my disease. I do my best daily to live with this monster in my body. We’re frenemies, my disease and I. I’m stuck in a prison of unending excruciating pain, insomnia and fear. I not only fear for my health but I fear how much more my amazing husband can tolerate because the role of caregiver can be a heavy, heavy, burden. I fear how many friends I’ll lose because I’m just not always reliable. I fear the day will come when I just can’t bear anymore. But the biggest fear I have is if I’ve passed this monster on to my babies. It’s for this reason I also try to embrace the blessings this disease has brought us. You sometimes have to look for them, but they’re there every day. I am learning to appreciate the small things in life and try not to take things for granted.
At this stage in my disease I’m afraid to go back to the doctor and try a new medication for fear that I’m the laundry list at the end of their Pharmaceutical commercial. Right now I try to manage my disease with diet, exercise, natural pain remedies, and stress management (good luck with that one). But who’s to say what the future holds. This disease is never boring. “It’s like a box of chocolates, you never know from one day to the next what you’re gonna get”. I’ll cross that bridge when I come to it.
So for now, I blaze the trail for others by learning as much as I can about my disease and by spreading awareness. I will “kick that door in” as Cookie would say and I will kick all the shit off my bucket list when/while I can. I will NOT let this disease rule me. It is not who I am, it is just a portion of me that makes up the whole, good and bad.
Thank you Cookie Hopper for all your time and dedication to spreading awareness about our disease. Thank you for your unending patience with all your “faces” while you manage your own ills and challenges, thank you for the words of encouragement. But mostly, thank you for putting a HUGE group of AMAZING people together that are more than just faces or a disease. We are a family. Bless you.