My Story: Katherine Butler

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What were the steps leading up to your diagnosis?

There were symptoms for years. My symptoms were treated as isolated cases; they were just pieces of a puzzle that was finally put together in February 2007 when I was taken to the Emergency Room by my parents. There had been migraines, extreme sun sensitivity, hypoglycemia, pseudo-seizures, painful joints, high fevers with no known cause, extreme tiredness and a rash. In 2007, at the age of 28, my parents noticed swelling in my legs that did not go down at night when elevated. Once at the Emergency Room, I was quickly admitted with congestive heart failure and renal failure. The journey was just beginning and the puzzle coming together.

What lifestyle changes have you needed to make?

The first major change that I had to make was giving up work. My diet had to be immediately changed as well. I had lupus nephritis that lead to limiting my sodium, potassium, and even daily fluid intake (which was the hardest because I was constantly thirsty). I have had to adjust my schedule and learn to say no to things that I would truly like to do. I had to learn to be dependent because that was going to be my only chance for survival. Within weeks of being diagnosed, I had ten lesions on the cerebellum and one on the frontal lobe, Lupus Cerebritis. I could not sit up or even roll over on my own. I had to learn to trust my doctors. I had to learn to be understanding of people and their reactions to me - everything from "the Prednisone make young girl ugly" to "But you don't look sick". I had to learn to find humor in situations that were less than dignifying and coming to terms that there was a reason for all I was going through.

Who has been there for you? How?

My parents have been truly amazing. I would not be alive without them. They brought me home from the hospital when some of my doctors told them there was no more that they could do and gave me around-the-clock IV's. They lost work and lost connection with the outside world. Our life consisted of doctors and treatment. Literally, that was all. They gave up everything to help me fight. They gave me back my life.

What accomplishment are you proud of?

I think that my greatest accomplishment has been survival. Three times within the first year of diagnosis my parents were told to prepare for the worst. Seven and a half years later, I have completely outlived all expectations by far.

The accomplishment that I am most proud of, though, would be maintaining a positive attitude. I will be honest and say that it wasn't there all the time, but I found strength in music. I found inspiration in humor, most of which was created in my own mind from the combination of medications that I was on. It took a while for my parents and doctors to catch on to my humor, but once they did, it was contagious and then I had company in my world.

I had to learn to find humor in situations that were less than dignifying.

Seven and a half years later, I have completely outlived all expectations by far.

Seven and a half years later, I have completely outlived all expectations by far.

What's your advice to someone else living with Lupus?

Keep moving forward. The first year will be by far the hardest, but keep going. Don't dwell on something you can no longer do, look to see the new things that you never realized you could do or that you enjoyed. Things will get better. Lupus is treatable. If you can't get a doctor to listen to you, find a new one, seriously. Talk to someone, you need a sounding board. For me, it wasn't with a Lupus Support Group. I couldn't get out enough to attend consistently and honestly, I didn't want to hear what others were going through at the time because I was trying to find my own way. Find a friend, the one you can call at two in the morning when prednisone has kicked in and you can't sleep. Find someone who will be there consistently. Have an advocate! This is by far one of the most important things. Have a medical advocate, someone who will fight for you, who can attend your appointments with you, write down information and remind you when brain fog sets in. Always have someone on your side.

Every day is a new beginning to do something you love and love what you do.

Is there anything else we should know?

Since my diagnosis, I have been told there was nothing more that could be done for me; I could go home to die. I have been wheelchair-bound three times. I have had ten surgeries. Find what makes you stronger, and find what gives you a will to live, even on your darkest days. Maybe that is looking into the eyes of a child, spending time surrounded by the beauty of nature, or even the lyrics of a song. Find it and hold onto it. Better days are ahead. You are not alone.

About Katherine Butler

My Story: Katherine Butler

I was born and raised in a small town in central Maine. Family was always important to me and I frequently spent time with my parents, brother, both sets of grandparents, aunts, uncles and cousins. Through traveling frequently as a family, I discovered my love for adventure, learning about and seeing new things.

I began writing poetry my junior year in high school as an outlet of personal expression.

I graduated from the University of New England (1999) and the University of Southern Maine (2003) with an Associate Degree in Nursing and a Bachelor of Science Degree in Biology, respectively. After doing some of my own traveling throughout the country, I moved to central Florida in the fall of 2006. By the end of that year, I had made my way over to the Gulf Coast of Florida.

After being diagnosed with Systemic Lupus in 2007, I turned back to writing. I am currently working on my first fictional novella.

Lupus does not define who I am; it is only a part of who I am. Every day is a new beginning to do something you love and love what you do. Keep moving forward and together we can conquer the wolf.

Visit Katherine's website


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