I am 29 years old and am the proud mom of 3 beautiful children, wife to a wonderful husband, and I have been newly diagnosed with AS.
I have had issues with pain and fatigue dating back to teenage-hood. I was always sick as a child and was “blessed” with a pretty terrible immune system. However, life as I knew it went downhill after having Mono at 14 years old. After that it seemed my body was out to get me. I remember having a lot of back pain as a teenager, but my parents chalked it up to lugging around a heavy bookbag. I broke my ankle around that same time, and had a difficult recover from that. I can remember an overwhelming feeling of fatigue and my friends calling to ask if I could go places with them, but all I wanted to do was stay home and sleep if I wasn’t in school.
I had my first child at the ripe “old” age of 19, and a short time after that is when I first began to notice the joint pain and swelling. Over the next several years I battled mysterious ailments, which no doctor could ever give me an answer for. At one point they diagnosed me with Fibromyalgia, but that diagnosis was later revoked because my symptoms didn’t seem to fit. My symptoms ranged from back pain to debilitating joint pain/swelling to fatigue to low-grade fevers to high inflammatory levels in my blood to low vitamin D levels to heart palpitations, etc, etc etc. I went on to have 2 more precious children, only 16 months apart. Approximately 1 year ago it all came to a head when I seemingly injured my back lifting one of my daughters. I went for an MRI which showed my spine was riddled with arthritis and disc herniations. I went through physical therapy, epidural injections, oral steroids, muscle relaxants, yoga, etc, before deciding to have surgery. I underwent a 2-level thoracic discectomy on July 6, 2011. I woke up expecting life to change for the better. Little did I know, it was about to take a turn for the worse. After surgery, my back pain worsened and the joint pain/swelling flared up with a vengence, along with sciatica and numerous other issues. My neurosurgeon was recommending another surgery, so I decided to get a second AND third opinion. The second opinion recommended the same surgery, but I still felt the need to get one more opinion. The third opinion was a neurosurgeon who looked at me and said, “Do NOT have another surgery.” He said he felt I had AS and that my MRI showed evidence of ligament damage and arthritis consistent with AS. In addition, I tested positive for the HLA B27 gene. He recommended intensive physical therapy and facet joint injections. Upon researching this disease, all of a sudden the lightbulb went off. I started reading other people’s stories, and it was as if I was reading my own biography. It all made sense, and I felt a sense of relief to finally have an answer. I have an upcoming appointment to meet with a rheumatologist to discuss treatment options. I have started taking NSAIDs on a daily basis, which helps to relieve some of the pain. I have also begun physical therapy and am looking into water therapy as well. The physical therapist warned me that this is a systemic disease and it will likely require lifelong physical therapy in order to maintain flexibility, mobility, and core strength.
Unfortunately AS isn’t the only health issue I battle. I often say I am 29 years old in the body of an 80-year old, and isn’t that the truth! I also have a heart condition known as Wolff Parkinson White, but thankfully I currently remain asymptomatic. In addition, I suffer from high blood pressure, gastritis, GERD, multiple thoracic disc herniations, spontaneous retinal tears affecting both eyes, dyshidrotic eczema of my right hand, and thyroid disorder.
Some days it is difficult to remain positive in light of all of my health issues, but I have to tell myself that it could always be worse. I am fortunate not to be stricken with a terminal illness, and I am blessed to have wonderful family and friends who help me through the tough times. I am still able to work as a nurse, although I recently took a position as a Telephone Triage Nurse, because I am no longer able to be on my feet for extended periods of time. I refuse to let this disease take me lying down. I have decided that my life needs a complete overhaul, and I am going to remain proactive in my own health.
Pennsylvania United States Of America