I was hurt on September 24, 1996. I was a teacher, walking my students through the hall, when I slipped on construction debris and injured my knee. I got up, but fell right back down.
Unfortunately, because I had injured myself at work, I had to file a claim with New York State Worker’s Compensation. I had to wait over 4 months for an MRI and almost a year for my first surgery. I have had a total of 4 surgeries on my right knee.
I had only been married a year when I had my accident. Before I was injured my husband Steve and I went skiing, biking and dancing together. I kept thinking Steve had not signed up for this and he would want to leave. Not the case at all; he accompanied me to my appointments, asked the doctors many questions, drove or arranged rides for me to physical therapy, and cooked. Steve became my all around caregiver.
As to exactly when the onset of Reflex Sympathetic Dystrophy (RSD) began, I am not quite sure. In the late 90’s, my symptoms were not consistent with my injury. My knee was extremely swollen, hot to the touch, and had an off-coloring to it. The pain I experienced was so intense, I felt as if my knee was constantly on fire.
I was fortunate that I had doctors who diagnosed RSD very quickly. No one dismissed me or told me it was psychological. I began treatment with a pain management specialist and was under that doctor’s care for over 10 years. My treatment plan was medication: 22 pills every day, including OxyContin and Vicodin. I was also in physical therapy three times a week for ten years.
But my knee pain got worse and the pain meds just kept increasing.
Living on Long Island was getting hard. The cold was hard on my knee. When there was snow or ice, I stayed inside because I was scared to fall.
We moved to Charlotte, North Carolina in 2005. The warmer climate did help some.
A year or two later, I sought treatment with another doctor as the RSD seemed to be spreading to my right foot. I started getting trigger point injections, nerve blocks, epidurals, etc. and they helped. I slowly weaned myself off narcotics and pain medications (not an easy process). My pain had not been eliminated but it had become a lot more manageable.
Just when I had thought I had things under control, this nasty disease decided to take a turn. The RSD spread to the right side of my neck, face, right shoulder, right arm, my jaw, and now my right eye – which is causing vision problems. I no longer can sleep for more than an hour and a half at any given time.
RSD, which is sometimes called the “suicide disease,” has caused me to lapse into clinical depression. I fight that every day with therapy and medication.
My worst pain days are usually associated with guilt and depression. I feel guilty that I cannot be the mom or wife I want to be, and that my children have had to overcome so much without me. My husband and kids understand that there are certain days when even getting out of bed is a struggle for me.
My children have had to grow up very quickly. They had to learn to do many things for themselves and, sadly, many times they have had to deal with disappointments. We may plan an outing, but if I am having a flare up, plans need to be canceled or changed.
When my children were babies I could not give them a bath, as I could not bend down to the tub. I could not teach my daughter how to play hopscotch and when my family goes on a bike ride, I stay home. When we go to an amusement park, I watch my family go on rides as I wave to them from my scooter.
I always wanted to chaperone school trips, but never could — it would not be safe to do so. I cannot walk as fast or as far as the kids. Furthermore, I never know when a very bad day will pop up, so committing to something in advance is hard.
I went to college and have a Master’s degree, yet I can no longer work. Teaching was something I wanted to do since I was very young. I very much miss being in the classroom.
I try to make it my mission every day to get dressed, put on makeup and have a smile. Yet that often only gets me the response of, “You look okay, so you must not really be sick.”
My doctors now say that I have Barre-Lieou syndrome, fibromyalgia, Dystonia, and clinical depression — all stemming from RSD. There are days when the pain is so bad that I am confined to my home and cannot care for myself or my family.
I am grateful for what I have — a wonderful husband, amazing children, supportive sister, reassuring friends and family. They all encourage me to fight and stay well even when I do not want to.
I know many people who have told me that they have been abandoned by friends and loved ones due to RSD. Yes, some people did not want to continue our relationship; but the majority stood by my side. My friends have taken me to appointments, driven my children to their activities, cooked for my family, called me, listened to me cry, sent cards of encouragement, and too much more to list.
RSD is a horrible disease. Very few understand it. Many have not even heard of it. But I do believe my family is helping to make the world more aware of RSD.
My sister Jennifer has organized a team on my behalf, called “Beth’s Bunch.” This is the fifth year she will be walking in my honor at the RSDSA’s Achilles Walk. She has raised over $10,000 for RSDSA.
My children and my nieces are also helping. Instead of birthday presents, they ask for donations to the RSDSA and have yearly lemonade stands.
My son Landon has begun to work on his Bar Mitzvah project. He is organizing a 5K race with a few friends to raise funds and awareness about RSD/CRPS. The Fight the Flame 5K (www.fighttheflame5k.org) will be held on November 3, 2013 in Charlotte, NC. They are still in need of corporate sponsors.
My family has so much hope. I am living today because of their faith in me.
Beth Stillitano lives in Charlotte, North Carolina with her husband and family.
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The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.