A.S. Face 0853: Patty Rodgers
On April 1, 1980 I was almost 20. I woke up and couldn’t move, my hip/leg were in pain and I couldn’t get out of bed. It was the day for registering for my last semester at college. My mom helped me and after a little while I was able to barely walk, and she drove me to school and we got it done. I had that same limp for several years. I had it through my 2 children (there were times I crawled to get to the crib), through my jobs, and every day busy life. It would go from my right hip (where it started) to my left. The pain was excruciating. After that first day, my mom and I went to several doctor/specialist/physical therapist appointments together. There was never a diagnoses. They were as baffled as I was, and usually anything they did only made it worse. So I just lived with it.
When I was 29 I found a chiropractor (out of desperation) who diagnosed me with sciatica – he said I’d get worse before better, which was true. About a year into treatments, I felt some relief. The truth was, I was on my way into reprieve and then remission.
I still limped a little, then once in awhile through the years, and then not at all for many years.
In 2006 when I was getting ready to leave for vacation, I had an irritated eye. I went into the doctor’s office the day before I was to leave across country so I could be ok on my trip. He said it was likely allergies and nothing to worry about. By the time I reached my destination, my eye was in pretty bad pain and I couldn’t go without sunglasses. The next day it looked like my eye was bleeding. I tried drops and tylenol to get through and even called the doctor who said he’d call something in for me. It was amoxicillin which obviously didn’t help at all. When I got home I went to my ophthalmologist – who knew before the exam that I had iritis. We got very friendly since I had to see him daily, then gradually less until the next flare up. He would ask me how I was feeling otherwise over the course of the next couple flare-ups and I finally asked him why he kept on about that. I mean, I was fatigued and feeling generally “blah,” but why all these questions? The internet provided me the diagnosis fairly quickly and very unfortunately. Why, yes, I was having joint issues, specifically a couple of fingers to begin with. My back? Oh that had been hurting for years!! Then there’s that little thing called fatigue (no one really understands how debilitating it is until they experience it).
The family doctor refused to do the proper testing. Oh, yes, the same family doctor group that misdiagnosed iritis which caused permanent damage to my eye. I never went back.
I went to a Rheumatologist. We did the proper testing and I was not quite diagnosed for sure with AS, but it did seem I had some type of spondolarthropy (the protocol for diagnosing AS is tricky I guess). I was HLA-B27 positive. Later I began to see another Rheumatologist – they sent specialists up to my area from the University of WA once a month for people who needed it and I jumped on that. He was “Dr. Tall Dark & Handsome,” as I named him, and he was very smart and personable. He diagnosed me fairly quickly. I saw him monthly and it was at that point we were discussing treatment options. I had some shortness of breath one day, and he ordered blood tests (likely anemia). When he saw the blood test results that month, he turned white as a ghost and left the room to “make sure these are your results.”
For the next two weeks I would be getting blood transfusions and very invasive tests. As it turned out, I had AML Leukemia. I later read somewhere that I was more likely to get leukemia because of the genetics and AS. But at the time I was just in shock.
Today I am nearly four years free of cancer. The chemo actually put my AS in remission temporarily, too, but it has since come back with a vengeance. By the way, Dr. Tall Dark & Handsome visited me a few times while I was in the hospital (University of WA) and even brought me movies to watch that he and his wife picked out for me. Not only smart and personable, but he was so very nice, too.
I rarely get the same kind of hip pain the way I did when I was younger, but it’s just different now. It’s more widespread and I have many symptoms, and the fatigue is unpredictable and merciless. My back hurts the most, I get frequent migraines, and my hands and feet are painful. Sometimes I wonder if my ribcage is tightening up, as I have some breathing difficulty and that mid-back center hurts after I eat. Sometimes I have good days and I feel like a million bucks. There aren’t many of those, so I am grateful when I do. My biggest sadness and deficit is that I am unable to function the way I want to or used to. I am now a person with a disability (versus a disabled person).
I only found out today that there are many others like me who support each other. I found several groups online, and this blog. It is a very lonely dis-ease and I am so happy to find others so that we can support each other and not feel so alone.
Washington, United States of America