Saturday, August 13, 2022

A Scar is Born: Carmen Maggio’s Story of Living with … ‘IT’ (Lupus)

carmen maggio - cage (photo: Brittany Strickland)

*My name is Carmen Maggio and at 12 years old I was diagnosed with Systemic Lupus Erthyematosus (SLE).

I’m 32 years old now and it’s been a challenging journey but God has brought me through it all. Life, as many know, is not easy. To be honest it’s plain out hard!

Yet I’ve learned with God nothing is impossible. If there is anything gained from my testimony I pray it will be to stay encouraged in trying times, have faith when fear seems paralyzing, and never under estimate yourself and the love God has for you. We are all vessels uniquely formed by the Potter’s hands, beautifully and wonderfully made.

Lupus is a very complicated and frustrating disease. Lupus symptoms include chronic fatigue, muscle pain, joint pain/ stiffness, hair loss, skin sores, and butterfly-like rashes. Too much sunlight is another trigger to Lupus flares.

Lupus is a chronic autoimmune disease in which you do not know when these symptoms will flare or how long it will last. Lupus can also affect any organ in the body, unfortunately it affected my kidney’s. As I continue writing I will not use the scientific/medical terminology of Lupus.

I will refer to the disease as “IT.” My reasoning for this is for many years my doctor would state “Carmen Lupus is going to be your disease,” This statement made me feel that “IT” had ownership over me but “IT” DOES NOT!

carmen maggio - cage2 (photo: Brittany Strickland)

At the age of 12 I had no idea what was ahead of me. I was sheltered by two loving parents who protected me as long as they could from “ITs” true ugliness. As years passed I felt as a caged bird protected but restricted. All my childhood activities taken from me in a blink of an eye. No more outdoor fun in the sun or anything that would cause stress on my body. “IT” flared all over causing butterfly-like rashes on my face and body. Leaving my skin burning and itching intensely. I lost my hair, gained over 20 lbs brought on by the steroids and chemotherapy called cytoxan. You could definitely say my self-esteem was at an all time low. Also, as you know, people can be so cruel. I started rebelling trying to fit in and be “normal” with my friends and not listening as I should have to the doctors. At the time I was in college and wanted to do college things, little did I know ignoring symptoms would not make “IT” go away by any means. Looking back, I always had an inward voice telling me there was more to me than this disease, to keep pushing and that this shall pass. At the time, I did not know that the voice was the Holy Spirit.

“IT” flared one day to an extreme that I could not ignore or cover up any more placing me on life support and complete renal failure. During this crucial episode I was air lifted by helicopter where I experienced a presence unlike any other feeling I had felt in my life. A warming, comforting peace fell over my entire body. The fear I had felt ever since being diagnosed, left. All the years of feeling alone, gone. That night at my lowest,accepting that this was it, I knew I wasn’t alone or had ever been alone. God was with me just as His word says “ It is the Lord who goes before you. He will be with you; He will not leave you or forsake you. Do not fear or be dismayed.” (Deuteronomy 31:8) Needless to say life-support was no match for God. I was actually told I pulled my own life-support tube out of my mouth, which startled the doctors but also exemplified the power of God in front of their eyes. I had prayers continuously going as I continued to recover. God delivered me and I give Him all the praise and say THANK YOU.

carmen maggio - cage3 (photo: Brittany Strickland)

Now, I can say my life is still not perfect and I am currently on dialysis three days a week. I also have a huge scar on my left upper arm where they had to place what is called a fistula so I can receive dialysis. I often view my scar — as one of my favorite songs says, “Because my brokenness brought me to you…and these wounds are a story you’ll use …So I’m thankful for the scars… because without them I wouldn’t know your heart and I know they’ll always tell of who you were so forever I am thankful for the scars.” Scars by I AM THEY. I do not look at my current situation as I would have years ago. I do not have fear or anger. I view it as life. Life to see another day. Life to spread God’s unconditional love. Life to share my testimony and encourage others. Often times the enemy will present temporary situations in our lives as permanent but the only permanent situation is God’s presence with His love for you. As I wait for a transplant, I have good days and bad but God has taught me many things in the last 20 years. The main thing is that He is with me, He loves me, and with faith nothing is impossible, just believe. I encourage all who might read this to not just know who you are but whose you are. You are truly loved unconditionally and should embrace that love as your anchor in life. And when you feel yourself sinking and your world crumbling beneath you. You will not be moved but you will stand in faith knowing that God is with you and HIS LOVE IS YOUR ANCHOR! YOU ARE NOT ALONE!

Click here to donate whatever you can so we can help Carmen reach her goal and get her off of dialysis.

Photos/concept by Brittany Strickland:




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