Arthritis is a huge part of my life. I live with it personally and I know others that are plagued by it. Below is my story and continuing journey.
I was 19 years old and at my first (of many) school events at the University of New Orleans. Something didn’t feel right to me. I became extremely hot and began to sweat. I had just gone to a tanning bed that day and thought it was an after effect of my session. It wasn’t until the first blood splatter landed on my hand that I knew something else was wrong. I rushed to the bathroom and tried to fix my first of five nose bleeds in a week. This was completely abnormal for me and paired with the hair loss, increased pain in both of my knees and a blemish breakout all over my cheeks and nose – I felt like a disaster.
My extremely helpful and amazing orthopedic physician was convinced something else was going on and he could no longer be of any help. He took a few blood tests and came back with the results and the name of some of the best rheumatologists in the city. This was the first time I had ever heard of rheumatoid arthritis (RA), and I had no idea it would consume my entire life.
Rheumatoid arthritis is an autoimmune disease where the body’s immune system attacks joint tissue causing inflammation – and a whole lot of pain. The way I describe an autoimmune disease is like this: the body’s immune system is meant to attack viruses or other illnesses, but when you have an autoimmune disease your body’s immune system gets confused and instead of attacking the infected cells it turns around and affects the good cells in your body. Your body is in constant battle with itself and it becomes exhausting.
I went to three different doctors. Each told me some form of “you’re just too fat” or “you just read too much on the internet” and I left crying from each appointment. I knew it wasn’t in my head. I knew something wrong was happening to my body and something needed to be done. I then met Dr. Madelaine Feldman of the Rheumatology Group. She was the only one who believed my test results and knew she could help.
That was six years ago. Since that time, I have been on countless medications, tried different forms of therapy and exercise, changed my diet and become a fond admirer of deep tissue massages.
I have met one person my age who has rheumatoid arthritis. Though she has been a huge blessing to my life, it’s true when Three Dog Night sang, “one is the loneliest number.” RA is an “invisible disease.” Meaning it’s not always something that is seen on the surface – if I had a nickel for every time I heard, “you don’t even look sick.” – but it is very real.
Since meeting Dr. Feldman, I have been inspired to raise awareness and support for those living with arthritis and other autoimmune diseases. She recently asked me to join the Arthritis Foundation’s New Orleans Chapter as a board member. I, along with Dr. Feldman and about 10 other people are bringing awareness to the greater New Orleans area about arthritis and it’s affect on millions of Americans.
Through the chapter and the foundation, I am about to start training to become a group leader. The group will be dedicated to bringing those with this debilitating disease together to share stories, give support and have a network of those who just get what you’re going through.
This December, the chapter will be hosting our first major event in the city. Dec. 17 at Audubon Park, we will be holding a Jingle Bell Run. The Jingle Bell Run is the Arthritis Foundation’s largest fundraising event for the year. All proceeds are put towards research and finding a cure for arthritis. For more information on the Jingle Bell Run visit http://www.jbr.org/neworleans.
I will be using this space as an outlet for my journey, advocating for others and general information on the foundation and it’s efforts. Please share any stories or experiences you may have or email me at firstname.lastname@example.org.