My name is Ina Schweitzer. I am 49 years old and I have Ankylosing Spondylitis.
I was diagnosed by, of all people, two ophthalmologists in September, 2011. I was on my way home a week before Labor Day, and suddenly had a sharp pain in my right eye. I had a hard time seeing anything. My eye watered profusely, and by the time I got home, it was red and makeup-less and I was in tears. My husband insisted I go to a doctor because I had a stabbing headache in my right temple. Thinking I might have Pink Eye, I went to the optometrist on the corner who took a long look, handed me some drops and told me to call on Friday. On Friday I called him early, as the pain in my temple and the eye-redness still hadn’t subsided. The optometrist had me see an ophthalmologist in the building who asked me the most bizarre question: “Have you ever been diagnosed with AS?” Then, I was shuffled off to an eye specialist at Loma Linda Medical Center. The angel of a doctor waited for me on Labor Day Weekend, took one look at me and said, “Have you been diagnosed with Ankylosing Spondylitis?” I said, “No, but you’re the second eye doctor today who asked that question!” I had scleritis, an inflammation of the sclera (the white of the eye)–a hallmark of AS, as I found out.
Thus began an odyssey of sorts, for me. Everything changed after that day: countless hours of research and walks down memory lane. I was finally able to make sense of why I felt so badly so much of my life. I joined kickAS.org, a really great resource of knowledgeable people, most of them also suffering from this invisible affliction. The day I joined, I summed up all of the symptoms I had felt for much of my life and put them in my first post, and received many helpful responses from the many, lovely people in that forum.
Here is what I wrote then, with a few updates:
*Since age 4, blackouts or “lost time” ranging from seconds to minutes. This was addressed, by a doctor at UC Riverside, before I graduated in 1987. He told me I had “inflammation of my blood,” gave me some pills and told me to finish them and I should be better. The blackouts never happened again.
*Throughout my short careers as ballerina, gymnast, high school tennis team member, etc., I had back problems. I’d “throw my back out” constantly, and was in pain very often, to the point where I couldn’t participate in activities.
*Starting at age 33, I had back pain so bad,that I’d have to crawl out of bed on my hands and knees and pull myself up on the door frame in the morning. When I was pregnant, this got so bad, I was afraid to move sometimes for fear of falling. I dealt with this for about 10 years after my son was born,until I finally dared to go to a chiropractor who told me I had arthritis and there was nothing he could do to “fix” the pain; he could only help me “manage” it. Thus began my trek to various massage therapists and acupuncturists. Some helped, some didn’t, but I don’t think it was necessarilyl their fault.
*Thumb/hand tremors, mainly on my right hand.
*Foggy brain & loss of memory.
*Digestive issues which have progressively worsened; one day constipation, the next day, well, you know…
*I had problems with my legs, to where I couldn’t keep them still. I had to keep moving and stretching them; the felt strangely tingley and ticklish and they hurt all at the same time. This was really uncomfortable while on business trips (flying). I found that if I took a couple of Ibuprofin, this wouldn’t be so bad. I later was given a name for this: Restless Leg Syndrome.
*General pain/stiffness in my neck at the center/top of my back area which is worse in the mornings and when I’ve been sitting for some time. I have a “dowager’s hump” there and am really working to improve my posture.
*Deep and cramping Hip and Shoulder Pain, a bad left knee, plantar fasciitis, chronic headaches, hand and finger swelling and stiffness.
*Fusion of L5 to the Sacrum and fusion of L4 / L5 has begun.
*Damage of my Cerebral Spine, with total loss of curvature, resulting in “Military Neck,” which greatly contributes to severe headaches. These are often accompanied by a severe twitch of my left, lower eye lid, and Occipital Neuralgia: a sharp earache accompanied by a painful, tender-to-the-touch scalp.
I have recently switched to a Paleo diet lifestyle, in the hopes that it will help with pain management. So far, inflammation seems to be somewhat under control, but only time will tell, I suppose. Every day brings some new challenge, and you just work through it. After all, I have a career, a home and family to take care of…
“AIN’T NOBODY GOT TIME FOR THAT!”
California, United States of America