I wanted to share with you different stories of those who live with Lupus during this month of Lupus Awareness. Hopefully, to help you understand what it is like to live with this debilitating disease or to help those diagnosed with Lupus understand that they are not alone.
I want to introduce you to my new friend Amy, we met through our Lupus Support Group here in Indianapolis, The Westside Warriors. I am so blessed to have found this group and this is probably not the last time you will here about them, I know you will love them as much as I already do. Enjoy…
My name is Amy. I have been married for 16 years to an amazing man. When we were married, I told my husband I wouldn’t say, “obey” in our vows, because I hated the way it sounded. Looking back, I’m glad he didn’t insist on leaving out, “in sickness and in health”, because unfortunately for him it has been a lot more sickness than health.
My story.. my Lupus story.. started ten years ago with the birth of my second child, my son. It was my second c-section, only this time I required about two hundred stitches internally due to my blood failing to clot properly. Four months later, I was vacationing at the beach enjoying the sunshine as I’d always done before. However, when I returned home this time, I developed a horrible skin rash. It wasn’t a normal sunburn or sun rash, but much worse. After going to countless doctors, many biopsies, medications, and months of the rash getting worse, I was finally led in the right direction. I remember sitting on the exam table while a doctor was taking photos to send to another doctor, because everyone was simply at a loss. There were two doctors and two medical students staring at me and I remember thinking, “I’m not an animal!” Then one of the medical students said the words that would change my life, “Have you tested her ANA levels for lupus?” At the time, that entire sentence was Greek to me, but once the test came back positive I began my journey into information overload. A journey in which I would find many more questions than answers.
The doctor started me on the medication Plaquenil. Within two weeks, I was extremely impressed to find the skin rash almost completely gone. I also found out that the blood clotting problem was also part of my Lupus. As quickly as I make platelets, my overactive immune system decides to kill them. Over the next few years I had several brushes with death including meningitis and histoplasmosis. That’s the thing about having an overactive immune-system, all those diseases that you have barely even heard of will find a way to attack you. I can’t tell you how many times I had to google the word “histoplasmosis” after I was given that diagnosis and went to the infectious disease doctor.
Many people with lupus, depending on what degree of complications they have, continue to work and may work without any problems until retirement. My case was different. My career as an air traffic controller meant I couldn’t take the medications I needed to take, because those medications were medically disqualifying. Right now I take seventeen pills a day. Now half of our family income is gone. Here is a perfect opportunity to mention that lupus flares are often caused by stress and one of the biggest things you hear time and again is to AVOID STRESS. Seriously? So… anyway, I thought I would avoid stress by losing my job, losing my income, and increasing my medical bills. There was certainly a lot of prayer.
Over the years I’ve had many ups and many downs. I have fibromyalgia, peripheral neuropathy, lupus nephritis, spina bifida, c5-c6 fusion, Sjogren syndrome, autoimmune hearing loss in both ears, and shingles just to name a few. Most recently, due to years of Sjogren’s and the lack of saliva and inability to fight bacteria, I’ve lost all my bottom teeth and one-quarter of my upper teeth. I’m currently fighting a fever and infection from the sinus build-up after that surgery, because NOTHING is simple with lupus.
I am very blessed. I have the most amazing family I could ask for. My mother and niece that moved five hundred miles to be near me once I was diagnosed visit me almost daily. My fourteen-year-old daughter is my caretaker and my best friend. She walks for lupus, she fundraises, she sings at events, and she has a heart of gold. The ten-year-old that sparked the lupus story was completely worth the two hundred stitches. When he was six at his very first lupus walk, he said in a very serious voice, “If we get to the end of the race, will there be a cure for lupus?” He’s such a mommy’s boy and always brings me purple flowers, because he knows purple is the signature color for lupus.
Last but certainly not least, my husband…my rock. Ronnie takes care of me like you can’t imagine. He cooks for me and our children, takes care of us, lets me rest. He is truly amazing. For Christmas he created a website for me, www.iwantacure.org dedicated to me, but it is for everyone to go draw a red “I” on your hand and post photos or videos about who they want a cure for. It’s for all autoimmune diseases, just to raise awareness for themselves and those they love. I think it is fabulous, because this is my story… but we all have a story, and we all want a cure.