I started my blog, Lupie Life
, in 2010 after I realized that it was time for me to come out of “the closet” so to speak. My life had been flipped upside down in early 2009 when I became gravely ill with an illness that not even some of the best doctors in the region could figure out. After many months of “I don’t know,” “Sounds like this,” “That’s not my expertise,” and “It’s all in your head”; I was finally diagnosed with Systemic Lupus Erythematosus
and I can happily say I am doing much better than when I was first diagnosed. However I can’t say anything glamorous about Lupus, it actually really sucks. Lupus likes my liver, my kidneys, my heart and the whole nine yards. For those of you who do not know what Lupus is, it is a chronic auto-immune disorder where the immune system is over-active and attacks the body thinking it is a foreign invader. The immune response is caused and inflammation is the result. On any given day I can suffer from swollen joints, joint pain, fever, fatigue, muscle pain/weakness, mouth sores, brain fog, rashes, excessive hair loss, sun sensitivity (when the sun is actually out) and an over all feeling of malaise. I am only eighteen years old.
My blog has been my place over the past two years to dump, to inform and to grow. On it I talk about issues surrounding Lupus few people are willing to even utter a word in regard to. I also give insight on what it is like to be a chronically ill teenager and a perspective few ever run across. Thanks in part to my blog, I have gone from not even being able to say the word “Lupus” to talking freely about it and not being afraid to say what I want to. There is always the delete button on a blog, where as in conversation… not so much.
I live very much day by day. Some days are good; others are downright dreadful. On my good days I go and enjoy life as much as I possibly can. Sometimes even doing things most people would dread doing but it is funny how illness can change a person. All of the sudden weeding in the rose garden is a privilege and no longer a dreaded task. Bad days I look for simple little things to help get me through. Being bed bound is not my idea of good fun; however there can still be positive notes that come from it. One such thing I have found is the space, my body may be trapped but my mind is free. External motivators such as pets or having a set task for the day can really help me to get out of bed. Hope is infused into me knowing the people who surround me love me and support me no matter how I am feeling.
I don’t root my hope in things like a cure or a new break through treatment; instead I have found hope in the world that surrounds me. I have made the choice to allow hope into my life. Darker days can be a struggle for me to find and allow hope within me. My emotions run rampant as my body throbs and feels beaten from the disorder. It is the small things in life that build my bigger picture of hope, even if all it is is witnessing someone smile or a bird sing.
I have a very positive outlook and perspective life now. There are many parts of my life I have no control over and I realize this. So instead of stressing over what I have no say in, I work on controlling what I can. Thanks to Lupus I have a deep feeling of empowerment and understanding from what the disorder has put me through. In many ways it has been a blessing in disguise. Lupus has opened me up to hope, a new level of comprehension and has helped me to figure out what I really want to do. Unlike other people who are my age, I lack the energy most days to bounce in six different directions at once. Instead I can only do one thing and I choose do it well.
I don’t know what the future will bring me, the past is gone and embracing the present along with whatever it holds is the only thing I can do. Surrounding myself with hope, strength and the desire to keep on going even when things seem hopeless. A first stop for information on Lupus Lupus Foundation of America
is an excellent first stop to learn more. There is lots of good info about Lupus on it and it is a reputable source :) What is with the spoon picture at the top of this post?
Spoons are for me the easiest way to give a physical representation to an abstract concept. Healthy people don't think about how much energy it will take to say get dressed or get the mail. I on the other hand have limited energy and when it is gone, it is really gone. I wake up every morning with only so much energy and have to choose how to use it. I use my "spoons" through out the day and budget them wisely. For every task I do, a spoon is lost. Sometimes they all run away from me (possibly with the fork and knife..) and I am in bed all day lacking energy to move. Using the spoon theory
I have found really helps to take a "you don't understand" situation to "here let me show you" scenario. I hope you all have many spoons today :) --Katyann Wilson