Saturday, January 25, 20202:00-4:00 pm
Please RSVP to PittsburghSAAGroup@gmail.com!
Monroeville Library4000 Gateway Campus Blvd.Monroeville, PA 15146
I was diagnosed with AS in May 2013 after seventeen years of unexplained pain and unanswered questions, and lots of doctors implying I must be mentally ill because there was no other answer. The toll of unexplained chronic pain is gut wrenching and exhausting. My pain worsened with each pregnancy and is a big part of why I stopped at two kiddos. When I finally made it to a rheumatologist, the correct tests had been performed prior. My rheumatologist told me on my first visit I had a disease called Ankylosing Spondylitis and that while I would always have challenges, we would face them together and come up with a treatment plan. That day changed my life forever. I now have a name for this awful disease, but I also have a community that understands as well.
I am a single mom to two beautiful kids who keep me busy. I enjoy writing, reading, exploring new places in Pittsburgh, and working on my graduate degree. When I am not busy with the kids or doing homework, you will find me out window shopping or at the gym. AS is this not-so-fun disease that we all deal with, but it does not define who we are. I want this group to be an open, safe place where all are welcome without judgement. I look forward to meeting you, discussing the latest AS research, and sharing our stories.
You can read more about me in an article about my journey I wrote for Spondylitis Plus.
I can’t remember a time when my body didn’t have pain. At age 2 I had a bout of uveitis. At age 7 pain started in my hands. Then my knees. Then irritable bowel. Then my jaw. My doctors kept diagnosing my individual symptoms but didn’t see a connection. When I left my hometown for Ohio State (go Bucks!) I had to find new doctors. My new rheumatologist thought to put the pieces together, and asked to do a lower spine/SI x-ray. There were enough degenerative changes that I immediately had a diagnosis of Ankylosing Spondylitis at age 19. Finally, a name for what I was going through! I was both devastated and relieved at once. We tried many treatment options, but most either caused kidney or liver issues or didn’t work well enough, or I turned out to be allergic to them. So I controlled my inflammation with diet, stretching, and the occasional Aleve, for over 10 years. A broken foot a few years ago put me into such an intense flare-up that I had no choice but to start on a biologic. After a couple of failures, and the added diagnosis of Psoriatic Arthritis, we found one that is working very well for me.
My husband, Jason, and I live in a small town in the foothills of the Appalachians in rural northeast Ohio. We have a lovely daughter who has given us two beautiful grandchildren. We love to travel together as a family. I spend my time singing, playing clarinet/bass clarinet, crocheting, crafting, and working on our house.
I became interested in leading a support group because of the amazing connection I found with another spondy. She and I met on a Facebook AS support page, and eventually met in real life. We’ve been close friends now for years. She is the only person in my life who really understands what I go through because of this disease, and having that support in my life has been hugely beneficial. I want to share that support with others. I can’t wait to make some new spondy friends!
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