Masquerade of Words Topic: Symptoms

Symptoms of Ankylosing Spondylitis and its Many Sister Diseases

I find this topic particularly difficult to write about today as I’ve lost most of my hair and nails in the past few weeks. I typically keep a hopeful, positive attitude and only allow myself the rare pity party. Fifteen minutes to cry and then I pull myself up by the bootstraps, name my blessings, and say a prayer of thanks to my creator.

There are so many symptoms! Where to begin? Some are mild one day and severe the next, but they’re always present at some level. My first symptoms started at age 2 with chronic inflammation of the lungs in addition to allergic asthma. Each time we moved to a new state I was subjected to the scratch and needle allergy tests (which was often), and I experienced severe reactions to every allergen introduced in testing. Next I experienced skin problems such as psoriasis and eczema. Joint pain began around the age of 16. It began with my hands and knees first and escalated to my lower back. Jaw pain was quick to follow. Severe jaw inflammation that left my face swollen and jaw locked … at the most inconvenient times … such as kissing a boy. I jest not, but I can’t help but laugh.

When I was attending college full time and working full time, really pushing myself, the joint pain went up many levels. Countless hours on the computer and using my hands for graphic design and sign language made the pain often feel unbearable. I believed I was entirely too young to have arthritis so I ignored the fact that it ran rampant on my mom’s side of the family while multiple sclerosis was on my dad’s side of the family.

When nerve problems and muscle weakness arose it was the first time I truly became worried. Not long afterwards neck and shoulder pain developed to the point that I could barely hold up my head. I couldn’t even hold the phone up to my ear. On the days that I could function to some degree the tremors were still severe and I joked with my co-workers that it was alcohol withdrawal, and I WAS drinking too much. It was an easy choice of pain killer in the evening before bed. My eyes grew redder by the day and once again I made a joke out of it and stated that I should cut back on the weed, even though I didn’t smoke weed (back then). Bruises appeared all over my body (vasculitis) and I joked that I was simply a klutz and would be just fine if I’d stop running into things. Muscle spasms became so severe that I’d suddenly jerk a cup of coffee all over myself, and I began to have trouble with my words. I once again joked that I must have turrets syndrome. Soon my eyes hemorrhaged causing many “specs” to appear in my eyesight overnight. I found that I couldn’t focus my eyes. My aqua eyes turned to black saucers for nearly 2 weeks, dilated on their own because of muscle weakness. Cognitive function became a definite problem. It was at this point that my doc sent me to a neurologist who ordered three different  MRI’s, 4 nerve conduction velocity tests (NCV), and 2 needle electromyography tests. I call them shock and needle tests, and they freakin’ hurt. This was the beginning of many diagnoses including heart disease and hearing loss from mixed connective tissue disease. I was left in a state of disbelief. All of this occurred concurrently with my dad’s diagnosis of cancer and my mom’s relapse into severe mental illness … easily the most difficult year of my life. Stress was a huge trigger factor along with 2 spider bites and 4 wasp stings within the time period of a couple of months.

Five years later I’m still alive and kicking. I could go on and on about the seemingly countless symptoms, but I won’t. It brings me down to think about them, and I believe in the power of the mind and spirit, so I’ll end with the one symptom that I believe is the most important sign. Extreme fatigue. There are many causes of excessive fatigue and none of them should be ignored. It’s your body giving you a loud and clear signal that something is very wrong. One of the many things I’ve learned over the past few years …

LISTEN TO YOUR BODY.