My name is Jodi. I am 47 years old and I am a wife, a mom, a grandma, a daughter, a sister, a cousin, a niece and an aunt. I have been diagnosed with AS. My rheumatologist actually gave me a “preliminary” diagnosis in 2007 after I tested positive for the HLA-B27 gene. My Grandma had RA and my 1st cousin has Lupus. I left the office and immediately began researching. Once I read the horrible, worst case scenarios, I went into complete denial and decided then and there that there was no way I could have this disease. After two failed marriages, I had just met “the one” and we had just been married. We bought a house and things were good. I didn’t have time for this disease. I was too busy being happy with my new life. I continued to see my rheumatologist through the next year, but the co-pay on my insurance was pricey for a Specialist visit so eventually I stopped going. Besides, I was feeling pretty good, no major pains, just what I considered to be the everyday aches and pains that come with aging and arthritis. We had never really found a permanent medicine that worked so I wasn’t on any specific medication. I was very active as a teenager and young adult with dance, tumbling and cheerleading and had suffered a few injuries so my pain was nothing more than I expected for my age. I played the yo-yo game of losing and gaining weight through most of my adult life and I’m sad to say that the gaining part has won. I am at least 80 pounds overweight and I know that doesn’t help my situation; however I can’t blame my pain on just my weight. I began experiencing pain in my abdomen in 2011. They attributed this pain to my gall bladder and I had it removed in June of that year. I felt better for a short while but in March of 2013 I ventured into a new sort of pain. My beloved Kansas Jayhawks were progressing in the NCAA tourney and we did not miss a game. We were in the crowded, downtown Power & Light District in Kansas City when the first attack hit me. Three more times over the next 3 months it would hit before I was taken to the ER by ambulance. The pain was so severe I could only explain it like a labor contraction at its peak that lasted for 10-20 minutes before it would subside. They ran tests but nothing conclusive and they suggested I follow up with my regular doctor. After seeing my regular doctor,they put me on Pantapropozole and I had an endoscopy. This showed a small hole in my stomach and thinning of my stomach lining. They came to the conclusion that it was from all the ibuprofen I had been taking to control my arthritis pain. They cut me completely off! Since June 2013 I have had nothing more than Tylenol, which of course does nothing for inflammation. Over the last few months I have been experiencing more severe pain in my lower back, hips, shoulder blades, hands and feet. When the pain in my hips began waking me up at night, I decided it was time to go back and face the music. My former Rheumatologist had since expanded his office and because he was not available until sometime in November, I chose to see one his partners. She was AMAZING!! In one 30 minute visit, while scolding me for taking so long to come back, she made me feel so comfortable. She actually diagnosed me with AS and began to lay out all my options for medication as well as their side effects.
My research began anew and I have been able to connect the dots. I’m positive my stomach issues stem from AS. I can see a lot of things from the last 5 years that can be attributed to AS and I was just not educated enough to put it together. One of the things Dr. Baratham said that really made sense to me was this: “The problem with most doctors is they are only concerned with the issue that affects them. They fail to look at their patients as a whole person. For example, when they took you off all ibuprofen, or NSAIDS, they failed to take into account what you were taking it for and gave you no options for helping the inflammation. They were only concerned with your stomach as an individual part and not the whole picture”. So I am now continuing the journey with a fresh set of eyes, which fortunately have no signs of iritis. I have been researching and have come to terms with my diagnosis. I need to lose weight and my doctor has highly recommended yoga for flexibility. I have read so many stories of people who are really suffering from this disease and I thank God that I feel as good as I do. I know that may not always be the case. I will continue to fight! I will get through this with the support of family, friends and faith!
Kansas, United States of America