FLIGHT OF THE BUTTERFLIES MAY 5, 2013

FLIGHT OF THE BUTTERFLIES MAY 5, 2013

Jessica Lucinda Morse Coley

Hmm...Talking about myself is always difficult for me...why? People would think that I'm always writing and talking about stuff so it should come easy, but in reality, it’s easier to have general conversation with people instead of delving into my personal life. But, for those who have no clue about who I am, then here it goes...

My name is Jessica Lucinda Morse Coley. I’m 31 years old and I’ve been living with Lupus for almost 12 years. I have a son who will be 13 in August who is my constant source of inspiration. He encourages me and keeps me focused. As for my personality, I love to laugh and smile. I’m a thinker…sometimes, an over-thinker =) I’m a loyal, dependable friend who will help in any way that I possibly can help. I like finding solutions and being involved in my community. I love being connected to a purpose. Sometimes, I feel that I was diagnosed with Lupus to be of service to those who also suffer with the illness. God knew what He wanted me to do. I believe we've all been put on the Earth for a purpose greater than us. It’s up to us to discover what it is and what we're supposed to do with our gift. Even though it took me awhile to accept it, I’m happy to say I’m walking in the purpose designed for my life.

My background: I became pregnant after being married to my husband for only three months. I was 18. The pregnancy had been uneventful until the last month. I began to notice abnormal swelling in my hands and feet. Doctors kept saying it was because of the pregnancy so they didn't bother to run tests on anything else. I had my son on August 10, 2000. Everything was beautiful. No complications. It was about 6 weeks after his birth that the problems arose. I would catch myself becoming short of breath just going to the mailbox which was only about 4 feet away from the porch. Then, I noticed that the swelling wasn't going down like the doctors said that it would. It scared me when I was holding my son (who was 9 weeks old at the time) and I lost my sight...complete blindness. I was blessed to have my mother home with me at the time. She immediately called my husband and then 911. They ran many tests...never in my life had I seen so many tubes of blood being drawn. I was admitted that same day. There was no immediate diagnosis…just plenty of hospital stays after this initial one. It was on the 5th or 6th stint in the hospital within a year’s time that I had this extreme pain in my legs. It felt as if I couldn't move them…as if someone had attached weights and tied my legs to the bed. I began to notice that my legs felt as if they were burning...as if someone poured gasoline on them and set them afire. So, I lifted my gown up to see that my legs were covered in a raised rash, bright red in color and sensitive to touch. It extended the length of both legs to the top of my feet. It was so painful that ice packs were tied to my legs to ease the burning. The medicines they administered didn't seem to be working. After the on-call doctor saw that, she called for a rheumatologist who didn't even wait for the blood work to come back to know I had SLE (Systemic Lupus Erythematous). The blood work only confirmed both of their suspicions. I was happy to know what it was that was causing me so much pain, but confused...I'd never heard of Lupus...what the hell was it? My family didn't understand it and neither did my husband, but little did we know what role this unknown disease would play in our lives...

The beginning stages of being diagnosed were extremely hard. I felt alone. I knew no one who had been diagnosed with the Systemic Lupus that I could relate to...and there I was, a 20-something newly married mother dealing with this complex issue. I became depressed and angry. I constantly remember asking myself why me? I'm too young for this. I haven't even begun to live my life yet. My husband tried his best to keep up with the mood swings and me being in constant pain, but I could tell it was taking its toll on him. My family stood by me and continued to encourage me even though I seemed to be pushing them away. The first year was a difficult year of adjustment. Then, when I discovered that Lupus had begun to affect my kidneys, I just refused to listen to any more bad news.  My doctors diagnosed me as having Lupus Nephritis. The medicines that I was placed on for that made me feel better. The pain and the rashes went away. The fatigue and the swelling started to decrease. Then, I was thrown a loop. My nephrologist (kidney doctor) told me that I would need dialysis because my kidneys were starting to fail. From there, I tried to remain optimistic still. My husband was the key to keeping me inspired. Through him, I learned it wasn't the end of the world...that I could still live a productive and happy life being a Lupus and dialysis patient. In March 2003, I started my first dialysis treatment.

As a Lupus patient, the two golden rules are to take your medications and stay stress-free. That was a difficult task being a wife, mother, dialysis patient AND then, adding fuel to the fire by enrolling in college. The goal was to lead a normal life and to not let people treat me differently because of my health condition. I was trying hard to “not look sick” when in reality, all I was doing was putting myself in worse health. So, for two years, I carried on this façade as if I was just as healthy as a normal human being. And then, it happened. After piling so much on my plate, it finally cracked. My husband left because he couldn't cope. My constant pains prevented me from finishing my degree and the rash had returned. The stress of it all sent me into a flare. I ended up in the hospital for almost three weeks. Those three weeks changed my life. It was then that I realized that I had to do better…not just for me, but for my son. I had to take better care of myself because another human being was depending on me to be alive.

The question is: How is my life now?

My life is beautiful!! I've started to focus on me and living my dreams. I've stopped worrying about the “what if’s” in life. I've started focusing more on what makes me happy and what will give me the best opportunity to provide the best life for my son as well as for myself. I've learned my boundaries and how to live well with Lupus. I've met some beautiful people diagnosed with Lupus who constantly keep me encouraged. The most important lesson I've learned is just because you have Lupus (or any other chronic illness), it’s not the end of life as you know it. Yeah, you have to make some adjustments like buying a sun hat or covering your arms and you may have to take some medicines that make you nauseated or your skin may burn some from being in the sun…but, at the end of the day, you’re living and your eyes saw the sunlight. You inhaled and exhaled fresh air. You kissed your son or daughter on the cheek. You watched the sunset. Whatever it is, you did something to create memories of the day that you were blessed to wake up and enjoy.

My story may be different from some and similar to others, but in some ways, I hope I can encourage others to embrace themselves a little more than they did before. We all are special in our own ways. We all deserve to be loved for our differences whether they are looks, personalities and health issues as well. So from my heart to yours, I love you and you are special to me!! Stay encouraged and prayed up!!! Be blessed!!!!