End Lupus Now | Southern Illinois Photographer Living with Lupus
May is Lupus awareness month. Many of you know that I have lupus and struggle with it on a daily basis. Its only recently that I began speaking out about this terrible disease and letting others know what those like us go thru. My beautiful and dear friend Stephanie Susie with Stephanie Susie Photography wrote a blog on this as well which I would love to share. Please read here....http://stephiephoto.com/blog/?p=5495 She took my story and gave it life. She gave photos that show the good & the painful parts. I can never thank her enough. She along with many of my family members & friends have given me the courage to tell my story. My husband however has been the biggest encouragement. I never could have imagined I would be so blessed to have him not only by my side but cheering me on every day. Even the little things such as lifting me out of bed each morning, & making sure I don't over do it each day....He is my steady. (There will probably be another blog on this topic later ;) He is such a blessing.)
Misunderstood. Isolation. Unpredictable. Imprisionment. Exhaustion. Debilitating. This is how my life felt from 2000-2006. I was sick. I was in pain. I wanted answers but no one had them. I was continually told the pain in my arms & joints were from too much tumbling & cheerleading. I never agreed. Thru high school & college I had been misdiagnosed & it wasn’t until 2006 when I found out I had mono. While doing blood work with mono they found some levels to be very off. I still remember the doctor telling me to go home & pray that it was MS & not lupus. I was shocked that he would say something like that but also shocked that he would instill that fear in me. Once asked if I had any history of lupus in our family…it all started to make sense. Yes. We have a history of lupus throughout my fathers side of the family. Finally some answers that I wanted. After all tests came back positive, they confirmed I had active Systemic Lupus Erythematosus. This affects many internal organs in the body. SLE most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system. You would think I would have been devastated at the news but like many others I was just thankful to finally have answers. Before this I always felt like people thought I was crazy & a hypochondriac. When in fact, I was too busy hiding & playing down my symptoms because I kept thinking it couldn't really be happening to me. I looked fine on the outside but it felt like my body was killing me from the inside out.
After trying many medications of methotrexate, imuran, plaquenil, benlysta, steroids, multiple pain meds, & every holistic method, vegan, vegetarian, paleo method you can try… I am still trying to understand the mysteries of lupus. We are still working to find a combination of the drugs that will hopefully slow down the disease & manage the chronic daily pain. Currently I go every 4 weeks to get an infusion which I get through a power port placed in my chest & do chemo weekly. It has saved so much time since my veins finally quit participating. Each day I take a mixture of pills & vitamins along with a gluten free diet. It is time consuming & very humbling, but I am still alive & I still have a chance to show my family & friends that I won't give up this fight.
Because of lupus & its many complications...I have experienced a corneal transplant, a hysterectomy, kidney infections, pleurisy, major brain fog, breathing problems, heart issues, extremely dry eyes-skin-mouth, loss of hair because of the disease & meds, rashes on my face & arms, & sensitivity to sunlight along with many other fun adventures. As well as the complications other Auto Immune Disorders like to attach themselves to you when you have lupus. I have been diagnosed with several such as Sjogrens, Celiac, Rheumatoid Arthritis (symptoms/not deterioration), Raynauds, Anemia, Vitamin B & D deficient, Alopecia, along with Chronic Fatigue. With having so many things go wrong at any given time I have learned what it means to be patient, how to simplify my life, how to build my faith, & how to appreciate the time that is given to me. I know I can only handle a certain amount of tasks each day & I am finally learning the limits of what that means. I am so thankful to have family & friends that understand this now & encourage me throughout this challenge.
I am currently trying to raise more awareness to lupus in hopes that there will one day be a cure. I am hoping to share with others the beauty & the positive things this disease has taught me & many others. Lupus is devastating but it has also taught me not to take things for granted. To enjoy the little things each day & to be thankful for the parts of my body that are working that particular day. I love that my son has learned about compassion and what it means to pray for those when they are sick. I love that I am able to share my peace with others & where my inner strength comes from. I am trying to look at lupus as it is an opportunity. It is an opportunity for me to share my story in a positive light rather than negative. I am a mother, a wife, & an artist. The Lord has blessed me with the ability to share my art by shooting Weddings & Senior Portraits. (Esther Bloom Photography) I am so thankful that I am able to have a job with hours I create & able to provide for my family.
Never did I think I would be living a life just trying to get through my days with “manageable” pain. Some days are harder than others & I feel defeated & that I am just waking up every day but not truly living. However, I want to leave a legacy that says the opposite. I do not want to be remembered as a parent who always said, "I am too tired." I want to be creative in finding ways to share special time with my family. Now at the age of 33 I am finally speaking out about this horrible disease. It's taken me 10 years but I am finally to a stage where I want to share my story in hopes that others can relate & see that they are not alone. You can have a family, you can have a career, & you can have a life which is pleasing to the Lord. It may not be anything like you once planned but it is still beautiful.
I have made you. I will carry you. I will sustain you & I will rescue you. Isaiah 46:4
He gives strength to the weary & increases the power of the weak. Isaiah 40:29
You came uninvited like the selfish thief you are. You silently invaded my body and my life with no mercy. You have stolen my life's work, my health, and my hair…you’ve also shaken my joy and self-esteem.
However, these things do not define me. I am more than my work, and by His wounds I have been healed. I will continue to rise again because I will keep my hope in the One Most High. He will renew my strength and my joy. Lupus, you have caused me unbearable pain at times, but you will never get my soul...and for that I want to thank you. I thank you because you have shown me I can rise above it all. You’ve shown me I am stronger than I ever knew. You’ve helped prove to myself that I am a fighter and a survivor.
So I may not like you, but I want to say thank you. Thank you for this life I've been given, even if it's harder than I would like it to be sometimes. Because when it is hard, I'm reminded that I’ve been blessed with the most supportive friends and family imaginable. Although I wish I could give my husband so much more, he never makes me feel like I'm not enough. He is the first to tell me I'm beautiful, even when I have no hair or when I don't get the medical results I would prefer. My family has been by my side from the beginning. They never doubt my strength, even when I question myself on the days during treatments, infusions, chemo, and appointments. To say that I have the very best by my side is an understatement. My friends constantly encourage me and make me laugh so that I can focus on anything and everything besides you, lupus.
But here’s the real kicker. The biggest reason why I’ve always hated you is because I don’t want you to affect my relationship with my son. I don't want him to view me as weak. But you will be disheartened to know that the only thing you have done is make us closer. My son is a prayer warrior and believes in Devine healing, despite what you try to take from us. He recently told me, "One day when we get to heaven, all this pain will be gone because there is no lupus in heaven. Aren't you excited mom? We can run and play together!"
So you see, lupus, you cannot break his spirit. And you most certainly will not break mine. Even a child knows that lupus will not win in the end.
To Join our team or to donate please click here: