My name is Brooke Cross. I am 32 years old and I live in Gresham Oregon, a suburb of Portland. I have been married for 9 years and have a daughter Lily who will be 8 in October and a daughter Vivian who will be 6 in December. I have been diagnosed with Ankylosing Spondylitis for almost 6 years. My AS symptoms started becoming a serious and frequent problem in 2003, a few months before I got married.I went to several doctors but was told nothing was wrong, so I just lived with it. I remember some nights having to sleep part of the night in my living room floor with my legs up on the couch because it I couldn’t get comfortable enough to stay asleep in the bed. In August of 2003 I got married and also started a new job in the loan center at a bank. My husband and I decided to have a baby right away and by January 2004 I was pregnant. My symptoms improved during my pregnancy and I I forgot about the symptoms because I assumed they were gone for good. On October 21 2004 my daughter Lily was born. The pain in my hips and back slowly returned and became worse than ever. I also started to experience bouts of extreme fatigue. I continued to see my primary care doctor on a regular basis, and I went to 2 other doctors during that time to see if they could find the problem. By August 2005 my pc doctor decided that I was a hypochondriac and he told me that since nothing was wrong he would prescribe 30 Vicodin and 30 Flexerall a month and he only wanted to see me yearly because coming in once or twice a month was wasting my time and his. I stopped seeing my pc doctor in January 2006 because he had decided he would not running tests, or sending me to specialists to identify my problem because he said it was not possible that he missed anything. In April 2006 I found out I was pregnant again. Once again my symptoms disappeared, so quickly and completely I again thought the problem had resolved on it’s own. My daughter Vivian was born December 1 2006. Within 2 weeks I was in worse pain than ever before. I finally became desperate enough to try one more doctor. I went to the local urgent care because the doctor there had an excellent reputation. I gave him a list of my symptoms, and a short history of occurrence and what other doctors had told me. Then I mentioned almost as an afterthought that my symptoms disappearing during both my pregnancies and came back worse than before right after the girls were born. As soon as I told him about the pregnancies he stopped me and said “I believe you have an autoimmune disease causing your immune system to attack your joints, women very often have no symptoms during pregnancy and that combined with other symptoms points to RA or AS.” He explained that during pregnancy a woman’s immune system has to become suppressed so that her body won’t reject a pregnancy and that when that happened it also stopped attacking my joints. He referred me to Dr Lee who I started seeing in March 2007, he already had copies of my x-rays and blood work from the urgent care doctor. He told me that Ankylosing Spondylitis usually takes several years of watching degeneration on x-rays and tracking symptoms to diagnose, but that even though he rarely did so, he was giving me a diagnosis of AS on my first visit. I was started on Remicade, but after 5 months of no result he stopped it. By October of 2007 I had been declared permanently disabled by the social security department, and had been forced to quit my job and was receiving social security disability benefits.
Since then I have been on several biological meds. A few have worked , but sometimes I have had to turn to narcotic and non-narcotic pain killers.
AS is painful. Sometimes almost unbearable. There have been periods when I struggled to walk to the bathroom, didn’t sleep for days because of pain and when I have felt hopeless in misery. But the pain ended up not being the worst thing AS did to me.
I was relieved to finally have a diagnosis. Until this point every medical issue I’d ever had had been resolved quickly and completely with medication or surgery. I had learned to deal with pain by remembering it was only temporary, and keeping an eye on the light at the end of the tunnel. I naively assumed that AS would be a short term problem once I was diagnosed and on Remicade. I basically put my life on hold to be resumed when I “felt better”. I told myself and my family that I expected to be better soon, I pretended to feel ok when I didn’t. But I didn’t get better. It took a long time to face that, and even longer to see that I was wasting my life waiting.
I constantly told myself: I will organize my house when I “feel better”. I will decorate my house like I want for holidays when I “feel better”. I will be a better friend and go out more when I”feel better”. I will cook more for my family when I”feel better”. I will start taking better care of myself when I”feel better”. I will deal with stressful situations when I”feel better”. I will do more things with my kids and husband when I”feel better”. I will have more patience when I “feel better”.
I slowly noticed that the result of being on “hold” waiting to “feel better” was no longer being present with my family or friends. I was exhausted just trying to “getting through” the day so I could get to the next day I had to “get through”. I couldn’t enjoy holidays, birthdays or even snuggling with my babies. I numbed myself in my mind to avoid pain and sadness, but I sacrificed happiness in order to do it. It was like taking a nap on a plane so you don’t get bored and the flight seems shorter. I was passing time, not enjoying it. I want to give my kids many happy moments that become memories they carry forever. I believe that if I am not actively participating with them in those moments then their memories will not be everything they can be. If I am not there in my mind, it’s like I wasn’t with them at all. It’s ok if sometimes I can’t. I have to remind myself not every moment needs to be memorable neither is every memory made from the big, bright moments. I trust myself to feel when a moment is special and I know I will come through when I need to.
I have to remind myself often to embrace life even through pain.
Oregon United States of America