Ina Schweitzer

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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

 


2 Responses to “Ina Schweitzer”

  1. Dear Ina,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Nice to know this headache (as you discribed, freakishly, to the tee even to the point that husband was ready to rush me to the ER as well) is caused by an already existing medical condition.

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