My name is Julia and I live in the Pacific Northwest of the US. I am almost 62 years old, but I was diagnosed with AS when I was about 32 after many years of painfully debilitating sciatica issues. Like many who have AS, I also have other disorders such as Crohn’s, scoliosis, and a set of symptoms that mimic fibromyalgia, but which are not “Fibro.” There are others as well, but a link to AS has not been positively established, so I will leave them off the list 🙂
I have had iritis (inflammation of the iris of the eye) three times, such that my right eye remains in a state of constant low-grade photo-phobia, even absent of active inflammation. I am HLA B27 positive, which was discovered during testing that took place when I had my first bout of iritis in 1994.
My AS remained relatively stable and inactive from the time I was about 34 until I was about 45 years old. Part of that time I was on NSAIDS, which I think were useful, until they became prohibitively expensive and then I just used Alieve from time to time. The sciatica settled down and I could count on it being in particular evidence about twice a year for a couple of weeks.
I took advantage of those years to be as physically active as I could be, believing (at the time) that when the disease flared up again it would be quickly debilitating. I loved camping, kayaking, fly fishing, taking photographs of beautiful places. I travelled the back roads of some of the more remote areas of the Pacific Northwest, British Columbia, The Yukon, and Alaska. I worked and travelled between Alaska and the Pacific Northwest for several years. When home bound I learned about construction and used my skills to add on to my home, my cabin, build decks and out buildings and other similar projects.
During the approximate 15 year period, when the AS was pretty dormant, I did many things. I worked in the architectural field as a project manager and a grant writer, owned two small businesses, worked for “Corporate-America”, and raised pet Shelties. In short, I packed a great deal of adventure into my life so that I would not regret it if the AS prevented me, in later years, from pursuing the activities I enjoyed so much. It was exactly the right thing to do, as now I am physically incapable of participating in such things in a safe way. My range of motion is compromised enough that even driving has to be assessed on a day-to-day basis.
When I was 52, I decided to go back to university. I obtained my degree in 2010. Graduating at age 57, with highest honors, was entirely the best thing I ever did!! I loved the whole experience, especially the way it expanded my ways of knowing. For five years, I worked hard to stay fully present and fully invested in my studies while I held down a part time job and was fully responsible for the maintaining of our home. The stress took its toll on my health, and slowed me down a bit.
Even so, once having completed my degree, I took several certificate courses in Professional Life Coaching so that I could pursue my dream of helping people reach self-desired achievements. I also published some poems and spent much time in writing apprenticeship to further another aspect of my personal dream to be a writer. FaceBook has been a wonderful platform for me as it provides authentic interaction with people while honing my writing skills.
My first active fusion (at about 45 years of age) was not recognizable to me as a flare. It lasted about eight weeks and involved my neck (I had never been told to expect issues with my neck; the early issues had all been lower back and sciatica related.) It was so painful that I went to see an older woman who was a licensed Psycho-physical Muscle Release Therapist and a Practitioner of Homeopathic Remedies. Although it could have been a complete coincidence, after only two sessions (two weeks) the pain was gone. Naturally, I declared her to be a “miracle-worker!” The next time it happened (about three years later) we had both moved out of that state, and I was unable to locate her. Since I was also not able to find a duplicate type of person, just I just bore the pain by wearing a soft neck brace for 6- 8 weeks. It’s not something one easily forgets.
By the third or fourth time I had one of these fusions, and my body was starting to tilt forward with that tell-tale Question Mark appearance, it was dawning on me that it was AS related. When I began to have to be so careful going down a flight of stairs that I was placing my cross-body bag over my butt to give me backwards ballast, I figured it needed to be addressed medically once again.
Even with a pretty clear history, Drs. have typically been of little help, and I was usually left frustrated, and angry. Part of the issue has always been the periods of plummeting-energy that occur and the chronic pain in other places. In fact, I did not learn until recently of the Fibromyalgia-like condition that often accompanies AS and, of course, as I do not have actual Fibro, I was getting the metaphorical rolled eyes from the medical community. So, it’s always been a bit of a roller coaster trying to get consistent and conscientious medical support. I was, however, placed back on NSAIDS; relatively serious ones, too, which have been as useful as they can be until very recently when I had to cut back due to GI bleeding etc.
In 2011 when I had my third round of Iritis, I was finally referred to a rheumatologist who seemed unbelievably arrogant and seemingly ignorant in his understanding of the affects of AS on women. I suspect I shamed him a little because he had been SO sure that I DID NOT have AS, and then had to eat his words when the X-rays proved him wrong. Nevertheless, he and I discussed my switching to a Tumor Necrosis Factor medication such as Embrel. However, I found the cost and the potential side effects too much to deal with at the time, so I elected to wait. Since then, I have had about three more more fusions. The latest one was intense but surprisingly short in duration and I almost mistook it for some other issue.
There isn’t anything about AS that I would “recommend” 🙂 but living with a disability that is virtually invisible, has really changed my perception of the world. No, not all of that perception is positive, but my compassion for self and others has really been positively affected by having a disorder (well several, actually) that has its own mind and trajectory in my life.
Washington, United States of America