A.S. Face 0272: Samantha Van Jeune
The rheumatologist told me he suspected AS at my first visit (almost a year ago) but sent me out for tons of tests to rule out everything else. I had so much blood taken that my vein collapsed and had x-rays taken. I was even sent to a GI and had a colonoscopy done. The x-rays did show a thickening of my achilles tendons and previous x-rays showed degenerative disc disease in my lumbar spine. The colonoscopy was normal. All my tests came back negative and was told seronegative arthritis and was prescribed methotrexate. I went home and googled methotrexate. Bad idea. I was too afraid to take it. After 6 months I went back to see the rheumatologist. At which time I told him about the pain in my shoulders, hips, and neck (in addition to the back, knee, foot, ankle, hand, etc). This is when he said “I really think you have AS. You need to go have more x-rays done and I want to start you on enbrel or humira. I don’t want to wait 6 more months. Talk to your husband and decide what you want to do and come back in April (3 months). The reason he told me to talk to my husband is because we had been considering having another baby and I told him I wasn’t sure I wanted any medication that would be an issue with pregnancy. The doctor was very clear that I need to make this decision as soon as possible. I didn’t know much about AS so again I went home and googled it. After learning about how disabling this disease is I have decided that (for now) I will start enbrel in April. The side effects scare me to death but so does AS. We are not planning on another baby because I am not sure how I would handle another pregnancy. I have two healthy children and I’m happy with that. My last pregnancy was very difficult due to back pain and fatigue and my husband and my 7 year old daughter helped me with almost every aspect of my life. I don’t want to put them through that again and can’t imagine it with a toddler to care for as well. I guess I should have started at the beginning. I have had symptoms since childhood. I remeber the knee pain starting in elementary school. Over the years I told my mom of aches and pains and fatigue. She took me to a few doctors when it wasn’t just assumed to be some mild childhood illness. I was always told it was just growing pains. In middle school I started to have back/hip pain. Mostly I would notice it when I was about to get sick. Knowing what I know now, I think this was actually a flare. No one around me would get sick but I would have intense pain in my back and hips. It was unbearable. I was so tired I would sleep almost all day and night. My mom and I always chalked it up to the flu. Things continued this way for years. It all started to get worse after I had my daughter. The fatigue and back pain were terrible. I didn’t give it too much thought however, because I had a new baby. I also had gallbladder surgery 3 weeks after having my daughter and started a full-time 3rd shift job when she was 7 weeks old. It was a physically demanding job. I went home every morning to take care of my baby and slept little if at all. This must be the cause of my back pain and fatigue. There were occasions when my knee or shoulder would hurt so bad I would go see a dr. Most of the time they treated me like I was just there for pain meds. I never had even asked for any. I was told almost every time that I must have a muscle sprain or strain. I was sent to physical therapy at one point. Over time, I pretty much lost faith in doctors and just learned how to live with the pain and adapt. I was taking lots of motrin and tylenol. My heating pad was my best friend. Even with the pain, a fulltime job, and a toddler, I excercised daily. I ran 2 miles after work every day. It helped immensely with my ADHD. When my daughter was 3 I moved to a new town and transferred my job. It was still as physically demanding but was slower paced and a bit easier. I was still excercising daily but wasn’t able to run as often. I woke up one day and my knee was very sore. It was a little swollen but over the years this happened frequently so I didn’t worry about it. It was at this time my husband hurt his back pretty badly at work. He was a self-employed carpenter. This meant there was no workers comp or unemployment. He tried to go back to work after a couple weeks. He couldn’t. He could barely move. He was sent to many doctors, specialists, and pain management. Over the next two years it was determined his injuries were so severe that he is now considered legally disabled. That’s a whole other story though! Anyways, over the next two days it got worse. My husband made me see a doctor. They weren’t sure what was wrong but put my in a knee immobilizer and sent me to an orthopedic dr. He told me I had a subluxation of the knee cap (dislocation) and a mild tracking disorder. Finally an answer! I got a special knee brace and went on with life. A few years later I woke up with horrible back pain. I took some over-the-counter pain pills and tried to ignore it. I had to go to a friends child’s birthday party and wasn’t going to miss it cause of back pain. I only lasted about a half hour. I threw up because the pain was so intense. I went home and took a left over pain pill from my knee injury. The pain persisted for the rest of the weekend and I decided Monday morning I would go see a doctor. Since my move I hadn’t found a local doctor yet. My insurance company had sent my a new insurance card with a local doctor listed as my primary care physician on it. I looked up the doctor on the card and called for an appointment. He saw me right away and said he was quite sure I had strianed my back. He wanted to send me for x-rays anyways. I was given muscle relaxers and non-narcotic pain pills. At my follow-up, my pain had not gotten any better. The doctor had informed he got my x-ray results back and was surprised to see mild DDD. He had me start PT and come back for a few more follow-up appts and started me on steroids. There was still no improvement. He gave me a cortisone injection in my back. This caused my pain to increase and gave me no relief. I informed him of a family history of arthritis and thyroid problems. I was sent for bloodwork and it was all normal. Finally he sent me to a neurologist. She continued my PT for the next year. Also had me start on a stronger muscle relaxer and another pain medication. During this time I became pregnant with my son. The pain in my back was horrible. As the pregnancy progressed so did the pain. I had trouble sitting, standing, sleeping. I took tylenol for the pain. The tylenol did little to help but being pregnant, my options were very limited. My neurologist prescribed lidoderm patches and tylenol 3 when I was about 5-6 months pregnant. I was still going to PT twice a week. During my pregnancy I could not even do simple things like dishes or laundry. When we went out shopping, after about 10 minutes I needed to use the motorized scooter in the store. It was quite embarrassing at only 26. We went on a vacation when I was 6 months pregnant to Disney world in Florida. I had to rent a motor scooter to use the entire trip. After my son was born, the pain gradually improved to the level it was pre-pregnancy. I had a couple of flares (which i thought at the time were sprains/strians) over the first 6 months. My shoulder pain, hip, pain, knee, and foot pain hadn’t really been brought up to the neurologist. I really never gave it a thought because I didn’t know they were even related and I was seeing her for the back pain. Then I met my best friend. She had lyme disease. That is what got us talking about our problems. She had had nearly identical problems to mine since childhood, long before the lyme disease was even a factor. We were talking about our various aches and pains and how strange it was at our age. We talked about years of pain and fatigue and I realized that for the first time ever, someone else actually understood. Someone knew I wasn’t a hypochondriac or a cry baby. She kept her pain to herself as well and just learned how to live with it the way I had. I remember thinking to myself that if someone else my age has all these issues too, maybe there is more to it than just overuse etc. I started googling. Lots of conditions came up but I was sure I didn’t have any of them. I decided to mention ALL my problems over the years to my neurologist. These doctors in my new town were the first one’s to take me seriously and to not shrug me off as a drug seeker so I felt comfortable telling her my story. She decided that it would be a good idea to see a rheumatologist. I won’t get into all that again but was relieved to have a doctor that really believed me. She listened to me the way my new primary care doctor had. Never once did either one treat me like I was crazy, faking it, looking for drugs. I was excited and nervous about seeing the rheumatologist. For the first time I felt like I might finally get some answers. Because of my experience with doctors in the past I was nervous. I expected to hear “you’re too young to have a problem” or “there’s nothing wrong with you”. Of course, no one wants to have a health problem but when you do, you want answers. I was so relieved after meeting my rheumatologist. He listened intently to my entire medical history. He asked lots of questions about things I didn’t even think could be relevant. He then sent me for blood tests and x-rays. He gave me a referral to a GI. He also validated my concerns and said “I think you have AS but I want to rule out anything else.” I am very lucky to have 3 doctors who listen, who genuinely care, and who will do whatever needs to be done to get me the help I need. I am lucky to have a husband who has been by my side through this whole thing and has been very understanding. The struggles we went through with his disability have made him more understanding of what I am going through. It has also made me more understanding of him on those days when he just can’t get off the couch. Our problems aren’t quite the same but we still get it. I am lucky to have a best friend who genuinely understands my daily struggles and what I live with because she has the same struggles. She is still waiting for answers. She has been with me at every appointment and mentioned me and my experience to her doctor. Because we have so many similarities her doctor has decided to look into her complaints more. She has been sent for blood tests and x-rays. The next step is a rheumatologist and GI. I am relieved that my diagnosis is helping her towards getting a diagnosis as well. When I got a diagnosis I wasn’t sad or upset or scared. I probaby could have jumped up and down with joy to finally have an answer. It is a surreal feeling to know after all these years that it’s not in your head, your not a cry-baby, and in fact you are stronger than even you knew you could ever be. I have to admit the medication I will have to take for this disease scares me to death. The fact that I will struggle with this every day for the rest of my life is difficult to accept. Fearing my children could inherit this disease is probably the worst part. I have good days and bad days. The good days I try to do as much as I can. I take the kids on day trips when I can, run errands, laundry, etc. On the bad days when my 17 month old wants me to get up and play with him or my 8 year old needs me to pick her up at dance, I have to get myself together and get moving. They keep me going. I am thankful for that because some days I need that extra push. I don’t feel sorry for myself that I have AS. I don’t worry about what the future will hold for me. I just keep living my life like I always have. If my pain or fatigue get in the way of me doing something I want to do, I figure out how to work around it. AS doesn’t define me or decide what I can and can’t do in life. I am still the same person I always was. Now I just understand myself a little better. All in all though, I would say I am lucky. I have a wonderful life. I have an awesome support system and great doctors. I have two beautiful children and an amazing husband. It doesn’t get any better than that!
Hartford Conneticut United States of America