A.S. Face 0279: Shawna Connelly
To my fellow AS’ers, here is my story. My name is Shawna Connelly, I am 34 and I live in Fremont, Indiana. I was diagnosed with AS 2 years ago and its been a daily struggle ever since.
To begin my story, I should start from the beginning….. Growing up I had an active childhood full of sports, and I heard of the disease because my step father has it and I would always get so frustrated that he would not want to go anywhere, he was always in pain and I would tell my mom, there has to be something they can do. She would try to explain it to me but I could not wrap my brain around it. I remember I couldnt even pronounce it and I would research it but still couldnt imagine what it all felt like. As time went on, I became pregnant with my second child, my daughter Makayla, and the pregnancy was a nightmare. I began to have shooting pain down my hip area on my right side and it would switch to my left side. I was always limping because if I put too much pressure on that side, it hurt, it would send a sharp pain up my lower back and hip. My doctor said the baby was sitting funny and it was sciatica. I pushed through and always had Aleve on me to take away the inflammation. After she was born, the pain subsided for around 6 months then returned off and on. I began to see chiropractors who said I had an extra bone growth on my SI joint and he would use his tool to pop everything back in place, I did this 2-3 times a week for awhile. I ended up going to a different chiropractor because I wanted to be sure that he was right, and I once again got the same thing. I would get adjusted, the pain would let up a bit and by the next day or two, I was back to limping. My doctor kept me on Lodine to keep the inflammation down but no tests were ran at the time. When my daughter was 3, I found out I was pregnant with my third child, my son Gavin. The pregnancy was the same thing all over again but this time, during labor I could not lay on my back, it hurt so terribly bad and they assumed it was all back labor. I had never had an epidural before nor did I ever want one but this time I was yelling for something, anything to stop the pain. After his birth, once again I was fine for the following 6 months or so, then it returned. The limping and the shooting pain, once again, I returned to the chiropractor and got adjusted. Finally my girlfriend had told me about her issues and about her pain specialist that she sees, so I talked with my doctor and he referred me to see him so I could try and get some relief. He first diagnosed me with fibromyalgia and put me on Cymbalta and vicodin. The vicodin seemed to help take the edge off and I didnt limp as much but something still wasnt right. I went back again and this time I was in tears because it hurt to sit, stand, twist, bend ….it hurt to move and it was all in my tailbone and hips. He decided to do a nerve test and as he was doing it he said on my right leg something wasnt right, he said either it was the muscle in my rear irritating the nerves or it was Ankylosing Spondylitis. As soon as he said that word….I broke down. I broke down because all of a sudden, I was understanding my stepdad and I was scared, nervous and anxious because how could this be, we are not blood related. During this time, I found out my cousin, who is the same age as me, has it as well. Now the pieces were coming together, the doctor sent me home that day with orders for blood work to see if I had the gene. I was devastated, called my mom terrified and could hardly speak as I drove. I was all alone and in that moment, I felt like God must hate me. The following day, I pulled myself together and got the blood work done, they said it would take a week or so to get the results and they would call me. I remember that day like you never forget your childs birth…we sat down at the table for dinner with my 3 kids and husband, the phone rang, I answered, the nurse said, Shawna, Im so sorry but your test is positive. I was silent but tears were rolling down my face and the look on my husbands face was shock. She told me she was referring me to see a rheumatologist and before we hung up she said im so sorry again. I laid the phone down and my husband just held me while as I cried. My poor kids, sitting there not knowing what just happened are asking questions and are teary eyed, but at that moment, everything around me was silent. I could hear nothing but the trembling I felt and my mind racing. The next few weeks were hard, it wasnt easy for me to grasp what was about to change and the things I would feel but I knew I had to force myself to be strong. I had my appt with my rheumatologist and after reviewing my MRI’s and XRAYS, he confirmed AS. He put me on the injectable Simponi and I did it once a month. At first, it seemed to help but after a few weeks, I began flinching when sitting and the pain came back, I became exhausted and depressed. I went back and he changed my injection to Humira every other week. I was still very fatigued and sad but doctors kept telling me I would be tired and gave me Prozac to help from being down. I couldnt sleep so they put me on Ambien and my muscles twitched so bad, they put me on Zanaflex. I was a zombie and was getting frustrated with so many meds now. So here we are 2 years later and I finally got off the Cymbalta because that was causing the twitching, I got off the Ambien because I had crazy dreams and slept for 15 hrs and I am now on Zanax, Vicodin, Zanaflex, Prozac, and still on Humira. I know it will take a while to get the medications right and its so frustrating but im trying. I am currently finding that I can only walk and stand for about 30min before my hips begin to feel like they are on fire and my legs go numb so I am going back to get on Enbrel soon. During all this time, I have a job, a good paying job that can be physical but not all the time, I have been on medical leave three times in the 4 1/2 yrs that I have been there and im finding that maybe its not for the best if I return and put myself in pain. At home, I can somewhat control it, rest when I need to and take my meds as my body finds necessary but I know I need the insurance to. Im very indecisive right now and unsure of what my next move will be, but I do know that I have embraced AS and that God does not hate me, he knows I am strong enough to handle it. I am so happy that I have found a community that I can talk to and know that all of you understand the daily struggle with this disease and I dont have to explain why I feel a certain way. So many people point their finger and say I am faking this disease, but as all of you know, who would want to fake something like this, its terrible. It has made me stronger and opened my eyes to knowing what I want and currently I am attending college for my bachelors in healthcare management. I refuse to give up, I refuse to lay down all day and let it have the best of me, I hope everyday for a cure and read about updates all the time. Although nothing has come yet, I feel someday there will be one and people can avoid suffering like all of us. I am so blessed with a supportive family, understanding friends and thick skin, if it werent for these, I would be a wreck. Thank you for taking the time to read my story and im very happy to be part of the AS family.
Fremont Indiana United States of America