A.S. Face 0700 : Candyce
Where to begin; I was “officially” diagnosed with AS & RA in 2006 when I tested HLA-B27 positive – a demanding test from my general Optometrist in a very rural town in which I lived most all my life. He saw me over a period of 10+ years, and in that time I encountered 3 painful bouts with Uveitis. The worst episode landed me a trip to Mayo Clinic, as I rapidly lost vision in my right eye. If you’ve never personally experienced Uveitis: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002000/ I have undergone major and minor back surgeries, knee surgeries, as well as other minor surgeries and skin disorders throughout the years. It was frustrating and even more fearful not knowing what was going on with me.
I was blessed with 2 daughters and a son, and my oldest daughter (21) was born with complex congenital heart disease. I’ve gone through many job and life changes. I’ve been forced to take extended time off work and even had to quit a job and even lost a job, in order to care for my daughter when she became ill, and underwent cardiac surgeries. The stress of an unexpected divorce, having a chronically ill child, being a single mother out in the work force, and having health complications due to my undiagnosed auto-immune arthritis disease were ongoing challenges, and just a way of life for me.
Don’t get me wrong, there were good times, and when I wasn’t at work I would be busy with my kids and all of their sports and activities from hockey, softball, swim team, tae-kwon-do, choir, band, 4H to name a few. We were always a very active family and very close.
In 2006 I was finally diagnosed with AS and RA, and while doctoring with Rheumatologist and Internal Medicine doctors 350mi. away, two of my children (my cardiac daughter was one) came down with both Mono and Strep. At the time, I had started taking classes on-line and still working. The stress triggered a flare in which I could hardly walk. Things went from bad to worse, when my father unexpectedly passed away during this time. I guess this is the part where I tell you that I am a warrior and survivor, because I wouldn’t still be here now if I weren’t!
Having been my own advocate, I continue to try and educate my family about Ankylosing Spondylitis, and that it indeed is hereditary, and how much this monster disease has robbed me of my life. My mom has come a long way with learning about and understanding AS. Unfortunately, I do have damaged relationships with family members that have turned away from me.
During one of the worst flares ever, in 2006, while undergoing treatment with Rheumatologist, I was accused of being mentally ill while being treated with Prednisone for my flare. The more I tried to explain my diagnosis of Ankylosing Spondylitis and discuss my condition, the crazier some thought I was. I was commuting to UofM to my Rheumatologist numerous times in the first couple few months, as I underwent aggressive treatment of my AS and RA. The added stress of a legal matter by taking my children away, and not being allowed to see them made my condition even worse, and compounded even more unnecessary stress. After a year, I lost custody of my son who now lives with his father. I lost so much time with my children that I will never get back, all because I was blessed with AS.
Even though having been diagnosed with AS and RA just 7 years ago, I continue to deal with some people who think I’m crazy/mentally ill, elaborating my illness and all the complications & side effects. I’ve been called a hypochondriac and a crazy person numerous times. It is unfortunate many people are in denial, ignorant and uneducated to this disease and its side effects. Yet still there are those who are convinced I can put this disease into remission with their personal ideas. AS has destroyed me financially more than once. It is most humiliating having to suffer mentally, physically, and financially because this disease is not an “accredited” disability disease.
In 2009 and 2010, my two oldest graduated from high school, and in Fall 2010 all 3 of us moved to different locations and went to college. Today, I am living with friends and do what I’m able to make it work. The past 2yrs back in school has been most rewarding, and definitely a challenge, yet a good one at that!
I have never felt more empowered going back to school, and being educated about AS and RA. I am even more excited about bringing awareness, and completing my advocate training. This ugly monster disease has destroyed relationships with some family members and friends, drained a lot of life out of this warrior. I am truly thankful for all of the wonderful people I have met along my journey, who have impacted my life in many good ways. I’m getting stronger and wiser each and every day!
Minnesota, United States of America