What's your mantra?

We all need a mantra, a fight song, a quote to keep us motivated and strong while living with a chronic illness.  These quotes can also be motivating in achieving any goals whether it’s a fitness goal, a weight loss goal, career goal, etc.  I teach a student success class at a community college.  One of the assignments I have my students complete is finding a quote that will serve as inspiration for them as they complete their degree. A quote or phrase that will help them stay on course when they really want to give up. I love the above quote from Dr. Martin Luther King, Jr.  I use this quote as a discussion point with my students about not giving up on their dream of a college education.  However, this quote also serves as inspiration to never give up my fight with ankylosing spondylitis. 

It’s easy to want to give up when you are experiencing a flare, or your biologic medication has stopped working.  I have felt that way on more than one occasion.  But underneath those feelings, I generally have a feeling of hope.  A feeling to look to the future.  I think this comes from my general nature of having a positive attitude and an optimistic viewpoint. I inherited this attitude from my mother who always had a joyful spirit.  Throughout her life, she faced many trials but managed to have hope and positivity through her faith.  I believe her example has helped me cope with AS for the past 7 years.

So, you may be wondering how I stay positive while living with ankylosing spondylitis.  In my past posts, I’ve discussed what AS feels like.  It may be hard to imagine how to stay positive when you encounter a life changing illness like AS.  But having an attitude of gratitude is a game-changer for coping with a chronic illness.  Here are some things I’m grateful for:

My family:  My family is my support system I couldn’t live without.  Each member has a role…they probably don’t even know it.  My husband’s role is caretaker.  He is here with me for the day-to-day ups and downs of living with AS.  He always offers to help me with anything I may need.  When I have a flare, he will offer to cook dinner or pick up food from a restaurant.  He listens as I express my frustrations of living with this disease.  My daughter Katie’s role is communicator.  She always wants to know the details of spondylitis.  She asks lots of questions and wants to know the nitty gritty of AS.  Katie checks in on me every few days asking how I’m feeling. She encouraged me to start this blog and serves as my “editor.”  She also made up a song for me to sing when I’m experiencing a flare, “Today spondylitis wins…Tomorrow Mom will prevail.”  My daughter Amanda’s role is my personal medical advisor.  She works as a physician assistant specializing in gastroenterology.  She understands the ins and outs of biologic medications because these are the same medications she prescribes to her patients to manage their Crohn’s disease and colitis.  As I share with her my experiences with different meds, she completely gets it.  She often explains my meds with details that I don’t even know about.  And I thought I knew a lot about my medications!  She will also entertain my thoughts on alternative treatments including the impact of gut health on autoinflammatory diseases.  I’m so blessed to have a supportive family.

My Faith:  I learned the love of my faith from my parents.  When I was a little girl, my father was diagnosed with cancer.  My mother and I would go to daily mass to pray for my father.  With my mother as my role model, I’ve always relied on my faith to comfort me when I have faced difficult times.  I rely on attending church weekly as my sanctuary to become quiet and calm when I feel overwhelmed by AS.  I enjoy reading inspirational books to keep my attitude hopeful.  I also love listening to gospel/Christian music.  I give thanks to God for all the good things in my life.

My home: When I lay in bed because my symptoms are especially bad, I look outside my window and appreciate the blue skies, trees, and the cool breeze coming into my bedroom.  I’m thankful for the beautiful home that I live in.  If I must be sick, my home is a great place to be! 

Technology:  TV, iPad, Netflix keep me entertained on the days I don’t feel well.  I also love that I can download books, movies, music, magazines from my local library.  When I can’t get out, the library is there for me 24/7 to help me feel better.  I’ve also discovered audio books which I thought I wouldn’t like.  It can be hard to concentrate while reading when I feel bad.  I enjoy audio books during these times because I have the joy of listening to a good book.

Just like empowering quotes, songs can serve as inspiration and hope.  Today, I heard a song on the radio by Tauren Wells called, God’s Not Done with You.  It was the inspiration for this week’s post.  At times, it can be isolating, lonely, depressing, and feel uncertain of the future.  You can feel like “how can I contribute to society when I feel this bad?”  This song spoke to me because God’s not done with me.    There are so many things to accomplish and do.  It’s just finding a way to do it with my abilities.    I advocate for arthritis through ACR’S Simple Tasks.  They notify me when important legislation is coming up and directly link me to my representatives. I can do this from the comfort of my home on my laptop.  I also join Twitter conversations which advocate for arthritis and spondylitis. Here’s the chorus of God’s Not Done with You:

God's not done with you

Even with your broken heart and your wounds and your scars

God's not done with you

Even when you're lost and it's hard and you're falling apart

God's not done with you

It's not over, it's only begun

So don't hide, don't run

'Cause God's not done with you

Living with spondylitis, “It’s not over, it’s only begun,” Whatever your interests may be, find your passion and pursue it!  What sparks an interest in you?  For me, it’s starting this blog.  It has been challenging yet a lot of fun to do!  Who knows what I’ll do next!

I'd love to hear your comments.  Please post a comment below.  Or please post a comment on Facebook or Twitter.  Thank you!