My name is Lisa Struck. I am 38 years old and work full time as an elementary school teacher (second grade) and a full time mother of two of my own children age 6 and 9, and step mother of my husband’s three children ages 15, 17, and 20. Life is busy and I work really hard not to let my AS stop me from leading a normal life.
I have been suffering from back pain since my early teen years. Since nothing was really visible, I don’t think anyone really believed me. I had seen a rheumatologist in my late 20s for back pain and elevated ANA. He told me I was fine and it was probably just a fluke in the testing. It wasn’t until I was 32 years old and had a 3 year old daughter and a 5 month old son that someone began to take my symptoms seriously and my chief complaint wasn’t even my back. My right knee blew up to the size of a grapefruit and all the draining in the world didn’t help. I saw an orthopedic surgeon. I also told him about the pain in my back and my left shoulder. He had me scheduled for MRIs in all three regions and a ton of bloodwork, including HLA-B27. My surgeon performed surgery on my knee to remove the synovium and synovial fluid in my knee. He had this material biopsied and was concerned with all of the results that he found. I was referred back to the same rheumatologist that sent me away and promised that “He will not send you away this time.” My knee was extremely slow to heal and I underwent surgery again for a torn meniscus. Meanwhile the rheumatologist decided that looking at my symptoms and my positive HLA-B27, I most likely was suffering from spondylitis.
I have been in pain more days of my life than not. My (now ex) husband was upset with the diagnosis and actually said “I didn’t sign up for this!” He wasn’t worried about my prognosis for me, but for himself. He didn’t want a disabled wife. (One of many reasons he is my ex.) I lived on Motrin for a long time before trying naproxen, indomethacin, sulfasalazine… so many medications that I can’t even recall. Finally the Dr. put me on Enbrel. WOW! That was a life changer! The knee that I hadn’t been able to bend in over 6 months- finally moved! I could climb stairs!! My back felt much better. My (now ex) husband actually said, “Wow! You weren’t faking! That medicine is amazing!” What a blow! He basically told me that he had believed that I was lying or exaggerating my symptoms until that point. I stayed on the Enbrel for about a year and a half before I started having swollen lymph nodes and became afraid of the medication.
I had a lot less pain, but still had to continue taking muscle relaxers and Vicodin. My rheumatologist sent me to a spine surgeon. He didn’t think that all of my symptoms are AS related. After seeing the spine surgeon, he told me that my back was like that of a person who has done construction for 40 years. My discs were disintegrated and I would eventually need surgery. He gave me epidural injections to postpone surgery. Meanwhile, in 2011 I ruptured one disc and herniated another in my neck. I had Level 10 nerve pain down my right arm. NOTHING controlled it. I had to have surgery on my neck right away. C4-C5-C6 were now permanently fused…surgically. The pain was much better. And I continued treating my back.
Shortly after that, I divorced my insensitive ex-husband for a variety of reasons. I was now a single mom of a 3 and 6 year old. Interestingly, my AS seemed to go into remission during this time. When I wasn’t looking, a wonderful man came into my life. I told him all about my AS and other health problems (chronic migraines). He accepted me for who I am and supports me even on my most painful days. We married in 2013 and he convinced me to finally take care of myself and have the fusion surgery in my lower back…because it was the right thing to do. I had the surgery during my summer vacation and my family nursed me back to health. Another great decision!
I am currently living on Motrin again as I am starting to have more neck issues. A recent MRI showed that I have numerous bone spurs growing on the vertebrae of my neck. (These were also found during my two spine surgeries.) I was sent to a pain management Dr. for more injections, this time in my neck. He spent almost an hour showing me my MRI and talking about the bone spurs growing throughout my neck, some pushing on my spinal cord. He confirmed that these were most likely my AS in action. Unfortunately I have to go back to the rheumatologist yet again. I may also be looking at a second neck surgery.
AS has taken a toll on my personal and professional life. The good news is that I now have a completely supportive family. The bad news is that my job is terrible on my spine. Unfortunately disability may come before retirement…but I will fight that as long as I can. I swore that AS wouldn’t change my life. It has. The only thing I can do is keep on living and take it day by day.
Michigan, United States of America