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Jeannette’s Story (Ankylosing Spondylitis)

Jeannette's Story (Ankylosing Spondylitis) The Kaleidoscope of Life

As many others with ankylosing spondylitis, I’ve become passionate about helping raise awareness. It’s my hope (our hope) that future generations will receive early diagnosis and treatment before permanent damage is done to the body, less pain, and better yet … a cure.

Four years ago my stress levels greatly increased. It was like an avalanche hit me and my family. In the span of a year I was diagnosed with ankylosing spondylitis, psoriatic arthritis, mixed connective tissue disease, neuropathy, ”awake” seizures, osteoporosis (lost 1 1/2” of height), carpal and cubital tunnel, fibromyalgia and vasculitis. Inflammation affected my entire body, including my vascular system. My blood vessels were bursting which greatly frightened me. My immune system attacked everything including my heart, lungs and kidneys. I lost hearing in one of my ears for about a year, but am very happy to say that I’ve regained most of my hearing.

My story begins at a very early age. I was diagnosed with chronic inflammation of the lungs and allergic asthma when I was only 2 years old. I grew up sick, hospitalized a couple times a year, so I knew nothing different. The joint pain started when I was around 16, but I remained silent about it as I had learned to hide my illness as much as possible for the sake of being able to participate in the activities I loved. Over the years the pain steadily increased. I made excuses and put it out of my mind as much as possible. I worked and went to college full time, got my degree in graphic design, and continued to push myself for the future I had planned for my life. I’ve now come to realize that for the most part I lived in the future. Most tasks revolved around a long term goal. That wasn’t much fun and I was riddled with anxiety about whether or not I was on ”schedule” with that plan. People aren’t trains. We each have a different path to take on this journey. Finding that ever-so-difficult balance between past, present and future is a great feat and a task that never ends.

Life forced me to confront many issues, head-on and quickly. What does one do when they’ve spent their life working hard, focused on the future, and then that near future becomes questionable? Live in the present, and draw strength from the past, with a beautiful glimmer of the future. Once I stopped trying to figure out who I was, or was meant to be, I became who I am. By truly releasing the past and the future, a total surrender, I was able to free myself to live in the moment and love fully.

Why can’t life remain like a calm stream instead of a rapidly flowing river? Consider the way a river beautifully sculpts the earth. Smooth is easy but also monotonous and uniform. Curves and grooves are provocative and thrilling, but can also be dangerous. Challenge brings about strength through humility and truth, and by recognizing faults and refining good qualities. Obstacles and pressures break down false pride and reveal who we truly are.

My favorite color is a unique cobalt blue – a beautiful, distinctive, deep, metallic blue that comes from Raku fired pottery. Raku pottery is fired twice and reaches temperatures around 1800°F. It’s able to endure this type of heat because it’s made from a special type of clay found in Japan that’s capable of withstanding ”thermal shock.” I mention Raku firing because I can’t help but compare that special clay to people put through the fire of life. It’s such an incredibly difficult process, but the result can be something truly extraordinary and beautiful.

At times I have a passionate dislike for character building events in life, but I know in the end they turn out to be worthwhile. How tormenting and paradoxical life can be while one matures. I sometimes find myself possessing a negative outlook on life just to prepare myself for the worst outcome possible … but never without a mustard seed of faith that a mountain might actually move beneath my feet. Pessimism is a way to spare one’s self, but not entirely. Faith is the key to survival. It’s the acceptance of what is, but also the knowledge, hope, and appreciation of something better, no matter how small the improvement. Life’s calamity builds strength for future trials, and with each new tragedy comes a renewed peace and spirit equipped for the next turn of the kaleidoscope of life.

Submitted 4-12-11

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. Jennifer LeBlanc

    This is so beautifully written. I’m so sorry for all you are dealing with and have dealt with, but I am so thankful that through our shared diagnosis of Ankylosing Spondylitis, we have become friends. You are a truly beautiful, artistic, positive, courageous person!

    • Jeannette

      I’m so glad we “met” through ASAP. You’re such a lovely person.

  2. Nikki Bass

    Thank you so much for sharing your story. It is so seldom I can find personal stories from people with whom I share the diagnosis of Ankylosing Spondylitis. I am recently diagnosed and so far haven’t gotten much relief, although…we are very early in treatments. Please continue to share your story, you have a wonderful way of writing that makes it seem like we are all sitting around the kitchen table.

    Thanks again and good luck,

    • Jeannette

      Thank you Nikki! Being involved with other AS’ers has helped me so much. Knowing you’re not alone in your struggles can be so comforting and empowering.

  3. Tina Coates

    OMG! I ca’n’t believe there is someone who knows what I am going through! You brightened my day! Thank you so much! You are now on my bookmarks bar!

    • Jeannette

      Thank you Tina! Your comment brightened my day!

  4. Zina Darling

    Beautiful perspective on life, Jeannette!
    You are an inspiration.
    Be well, dear lady!

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