On October 1st it will be 10 years since I took a giant leap into a year long project to raise awareness of a disease I have called Ankylosing Spondylitis or Axial/Undifferentiated Spondyloarthritis ~ A.S. for short because those full names are ridiculous!
My story is like so many who have A.S. It’s about the challenges we face when our health becomes compromised and severe pain & fatigue invades our bodies. I’m not over stating this – it is extremely scary to see your young body shut down. A. S. strikes people in the prime of their lives so a huge part of the issue is we are not believed. In fact, we’re told many demoralizing things like,
“Yeah, my back hurts too.” or “Try Turmeric, it will stop your joint pain!”
I even had a Doctor from Stanford ask me how my marriage was. Seriously.
Many of the suggestions for overall immune and joint health are well meaning and valid – I now incorporate many into my health regiment.
BUT… during what I call the crisis years… when your body is in such revolt and you have no answers – these suggestions are actually very hurtful. What we need is educated doctors and empathetic family and friends. We need to be heard so that we can get back to our lives.
For many with AS it takes almost 10 years to receive a diagnosis. Our search for answers is exhausting, frustrating, and long but I was finally referred to a Rheumatologist who kept working on sorting out the symptoms and believed me and didn’t give up. After finally receiving a diagnosis the long road to being “better” ~ but unfortunately not cured ~ can finally begin.
With a treatment plan I started to feel improvement ~ the worst of the crisis was past ~ I could move again and think again.
But I was angry!
I wanted to scream at the unfairness that most of my 30’s were basically a bust. At this point I was trying to figure out how to move past the hurt and do something constructive with the new understanding of what I had just endured.
I wondered how I could share my story to help others. Ten years is too long to be in such pain and basically disabled – I was almost bed ridden for the couple of years before finding help. (Those who knew me before AS and those who know me now find this very difficult to imagine and it is a difficult truth to share). If you are struggling with any health crisis I hope my story gives you strength and hope. A.S. treatments aren’t magic, the disease is difficult; it fluctuates from day to day and year to year and for many the treatments aren’t effective or accessible but there is hope to find your way to a better place.
I wanted to share hope most of all so I came up with the idea to use art as a way to focus myself and gain interest in learning about A.S.
“Art Apple A Day” was created! I chose apples because they are a symbol of health.
Each day for a full year, via my blog and social media, I shared a piece of apple art along with stories of challenges, thoughts, and successes and sometimes all I could manage was creating the artwork. My apples became a vehicle to discuss difficult topics in a mostly positive manner and to my surprise I also found friendships online with so many amazing people who understood what I had gone through because they too had A.S. Over the course of the year and since that first apple, the community of strong, courageous, and loving people have become like family.
{{{ I LOVE you guys!!! }}}
The year was a huge challenge in so many ways but I wouldn’t change it for anything and I am stronger for it! Now after all this time, I will share the journey once again, along with new insights, stories about what happened in the background, and 12 new apples – one for each month this time! I hope you’ll say hello and join me once again or for the first time because An Art Apple A Day might not keep the doctor away but I promise you it will be something interesting and positive in your timeline!
You can find me here as I take a retrospective look back each day or on Facebook and Instagram. Please don’t be a stranger – stop by and say hello!
See you October 1st!
