Nicholas J.

 

Face 1007My name is Nicholas J. and I am a face of Ankylosing Spondylitis, the invisible and incurable auto-immune disease that plagues me on a daily basis.

I have been actively suffering from its painfully debilitating symptoms for more than a decade. During my early college years from 1999-2003, I had convinced myself that taking naps on a shoddy couch in between classes was the cause of pain and aching in my back and hips. While this thinking was slightly karmic in nature, flare-ups were minor and sporadic so the need to investigate what was going on internally never crossed my mind much.
After finishing my undergraduate degree, I spent time traveling extensively to do some soul-searching around the globe.  Overnight train and bus rides often left me unable to do simple things like enjoy sports and an active lifestyle that was a part of me. Upon returning to the USA, I noticed that the pain was slowly beginning to creep into other areas of my upper back and neck. Over the next 4 years, I visited a variety of chiropractors and other doctors who were shockingly amazed at how stiff my back was yet they offered no viable treatment.
In 2006 the effects began to intensify greatly as if someone had been injecting me with a turkey baster sized syringe filled with concrete into my spine every night.  Doing simple things caused such immense pain that I began to forget what living a pain-free life felt like. I dreaded just getting out of bed every morning and starting a new day. Anytime I had to sneeze, I was forced to grab a hold of a doorknob or other sturdy object to keep myself from being knocked over by the throbbing pain and spasms. Driving a car became troublesome and dangerous as I couldn’t glance over my shoulder to see cars in neighboring lanes or oncoming traffic. The stiffness and pain reduced sideways mobility in my head and neck to only a few inches.
A year later my body felt like it was shutting down completely. A summer of frisbee golf left my right arm swollen and throbbing as if it had been slammed in a car door. As a high school state tennis champion, I couldn’t even play one game of ping pong to save my life. My left foot was next to fall victim and off to another physician I went to receive a cortizone shot that would result in little affect on anything. After another string of doctor’s visits, I finally landed a reputable rheumatologist who properly diagnosed me with AS after extensive MRI’s and x-rays. A genetic DNA analysis confirmed that HLA-B27 was present in my genes.
Upon hearing the news I felt shattered as if this was some sort of terminal death sentence and that was the end. While learning more about my disease I stumbled upon a symptom which predicted what an untreated skeletal system will become over time called “bamboo spine”. Imagine a spine appearing as a bamboo stick with zero flexibility or movement and all of the joints fused together in between the vertebrae. In my mind that image resonated with intense fear and the thought continues to haunt me still to this day. The only light at the end of the tunnel was the possibility of treatment through intravenous medication that would help my body fight the vicious attack that was underway inside of me.
The next few months were horrendous as the pain continued to increase while I waited to begin my IV infusion treatments. Severe depression, anxiety and overall worthlessness set in from the minute I woke up in the morning. A light in my dark tunnel finally appeared in December of 2007. I anxiously received my first infusion of Remicade, an extremely powerful medicine that works by tricking by body into not attacking me and ruining my joints, bones and limbs. Within a few weeks the pains in my extremities began to heal and my bones literally started to feel as if they were unlocking.
I was finally healthy enough physically and mentally to begin enjoying life and I slowly returned to a more normal routine. Under the advice of a well-educated sister who had experience with Remicade and rheumatoid arthritis, I began a practice of advanced yoga and healthier living. I currently exercise or engage in some sort of physical activity almost every day, with skiing be my absolute favorite thing. I work with a personal trainer who specializes in treatment through MAT (Muscle Activation Techniques), a dynamic muscular assessment system that analyzes and corrects muscular imbalances caused by the my disease’s desire to fuse my bones and joints.
This past week I received my 50th infusion of Remicade of what will likely be dozens more for the rest of my existence. Every 6 weeks I spend a handful of hours sitting patiently with a needle planted into my arm as a bio-technological marvel and life-altering medicine slips into my bloodstream drop by drop. The experience is bittersweet but provides me with strength and hope to avoid using painkillers or any other treatment that would render my life zombie-like and non-productive.
Currently my body still hurts daily in my back and neck but I am accustomed to the persistent abuse by now. There are moments where I wish I could just shake my body like a wet dog on a hot summer day and magically my whole body would magically unlock. It seems to be getting a little worse each day, but I try not to let that get me down. The reality of living a pain-free life evaporated in the last decade, but that detriment isn’t going to prevent me from accomplishing my goals and living to the fullest. Don’t ever give up and set your dreams high in life, because it feels that much better when you crush them with joy in the end.
Colorado, United States of America
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2 Responses to “Nicholas J.”

  1. Dear Nicholas,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Thank you for sharing, Nicholas. 🙂

    I also suffer from AS and am still in the process of mourning the loss of my ability to indulge in the physical activities which ruled my life while striving to ignite a passion for new physical activities instead.

    You mentioned that, after the onset of AS, you could no longer play tennis of ping pong. I myself became pretty bad at racquetball and badminton overnight and I’m thinking of taking up ping pong as an alternative. Now that you are receiving regular infusions of Remicade, are you able to play ping pong pretty well?

    I used to be remarkably limber from doing gymnastics and breakdancing and now I cannot even do the splits. Have you been able to gain and maintain a high level of dynamic and/or static flexibility from doing MAT and yoga–despite the stiffness imposed upon you by AS?

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