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Lupus Chick’s Story – How a Chronic Illness Changed My Life

October 3, 2016

Marisa Zeppieri

Image Of LupusChick Founder Marisa
Image of LupusChick's founder Marisa.

Marisa’s favorite verse: Philippians 4:6-7: Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.

Lupus is never part of anyone’s plan. When I was younger, my “plan” in life was to become a nurse and join The Mercy Ships upon graduation. It was the perfect way to pair my free-spirited personality with my love to help those who desperately needed it.

As you can see, it didn’t pan out.

On April 22, 2001, my life as I knew it would change forever. I would be hit as a pedestrian by a drunk driver as I walked to my car one evening. I fought to survive, battling internal bleeding, multiple fractures and a head injury. Eventually, I was sent to rehab to begin the process of walking again. During this time I would be hit by a proverbial truck.  At the age of 23, a diagnosis of Lupus was given after I suffered a small stroke.

Image of Lupus Treatment Marisa Zeppieri

Treatment isn’t terrible when my funny husband tags along!

I’m not going to lie to you. I didn’t handle all of this well. And while today I like to think I somewhat have my stuff together, I was a hot mess back then. I sulked. Threw a pity party or two (or twenty).

Then I got ahold of my emotions (hey, what can I say, I’m a passionate Italian), and I prayed…a lot! I gave myself a reality check and said, “Marisa, you literally survived getting run over by a truck. You can get through this too!” I felt in my heart if I was given a second chance at life, my job here wasn’t finished. No matter what was going to come at me with this disease, I was determined to not let Lupus ruin my life.

Lupus – Moving Past the Denial Period

When you are in your twenties, receiving a diagnosis of a disease that has no cure and can be life threatening is frightening and leaves you with a sense of uncertainty. I had never met anyone else with Lupus and most people were unfamiliar with it. In fact, most have never heard of it! Even though more people have Lupus than MS, Cystic Fibrosis, Sickle Cell and Cerebral Palsy combined. Over the years, the disease has taught me so much about how strong I truly am. It has also shaped my character and personality. Today I am even more motivated to accomplish my dreams because I know how quickly life can be taken away. I am dedicated, even more compassionate towards other, and have a deeper focus on the important things in life.

My nursing career didn’t last long. Lupus can range from mild to life threatening and my case has been difficult. Through numerous strokes, heart issues, chemo, a brain aneurysm, and becoming wheelchair and bed bound for a season, I had to find another way to not only support myself but fulfill the desire within me to reach out and help others.

And so, a writing career was born.

It was a way for me to combine my love for the written word with what I had learned in school. Writing would also be the perfect vehicle to reach others through online and print media. I’ve realized there are millions of people out there who need to be able to relate to someone who has gone through a similar circumstance. And that connection can be built through words and not necessarily in-person contact.

Image of Front Cover Gannett

One my favorite reporting opportunities – interviewing Harriet Tubman’s family about the new $10 bill.

About eight years ago, I took my writing one step further and began LupusChick.com. Today we are a top resource to those living with chronic illness around the globe. I had my first book published in May of 2013, titled, Lupus: Real Life, Real Patients, Real Talk. Filled with dozens of true, inspirational stories, the book is a survival guide for those newly diagnosed. It helps those who have hundreds of questions and need guidance.

Through my writing career and platform as Mrs. New York USA Universal 2015, I try to send one very clear message to both men and women, especially those with chronic and incurable diseases. This message is: A diagnosis, disability or disadvantage does not have to define us. Though there may be detours and speed bumps along the way, we can still reach our dreams in life. I am living proof.

Chronic Illness & Looking Forward

My husband always says, Blessed are the flexible, for they shall not be broken.” With Lupus, I’ve learned to be flexible and take bad days in stride (easier said than done). Who knows what God has in store next. My life has been a wild ride, but I know with Him in the driver’s seat, it is going to be an incredible journey. No one expected me to survive back in 2001, but God tells us that He came so we may have life, and have it more abundantly. Not only did He give me life, and has saved my life on multiple occasions, but He has put me on a path that is beyond anything I ever imagined.

Image of Marisa Zepperi Mrs. New York USA Universal 2015 LupusChick

Excited to represent my home state in the USA Universal pageant in 2015, with a platform of Lupus, of course! (J Gattelaro Photography).

Thankfully, He has a path for all of us. I believe He wants to use each one of us, each event we experience (no matter how painful and tragic) to reach out to another person and tell them there is someone who can bring peace back into our hearts. His name is Jesus.

While I would never push my faith on you, you will read about it every now and then on LupusChick. Personally, I believe faith is important. Life is hard. But having my hopes and faith in something bigger than my failing body has made life easier.

I hope you stick around and see all that we have to offer, and I look forward to hearing your story soon!

Image of Marisa Zeppieri signature

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Here at Lupus Chick, our mission is to help you live a thriving Autoimmune Life

Learn more about us >

Categories

Autoimmune

Beauty & Style

Body & Mind

Career & College

Devotionals

Food & Entertainment

Interviews

Products & Tools

Relationships

Join the list

Get on the email list to receive weekly updates and more.

  1. Julia says:

    You are a inspiration & may the Lord continue to Bless you in many ways!

  2. Pat says:

    Thank You for sharing your story! Your strength and Faith in God is so very inspiring. God Bless You.

  3. Sandra L says:

    I’ve never believed I was or am important enough for someone to care about what I go though and experience in life. Don’t get me wrong I have high self-esteem even when I go out and my skin is all messed up from the Lupus. I just found your site and realized that my journey is important too! Thank you for sharing and giving others the opportunity to do the same.

    • Marisa Zeppieri says:

      Thank you for your sweet message. I believe all of our stories are important and could potentially help someone else who is suffering and in need of hop I am so glad you found my site! XXOO Marisa

  4. Diane A. says:

    Thank you for sharing your story. I have had this dreadful disease for 35 years. As of 2016, I had to leave my professional career & now on disability. I have numerous complications & more bad days than good ones. You have found a new purpose , whereas I can’t seem to keep my head above water. I’m absolutely miserable & suffer in silence. I have an awesome husband & family support system, but I don’t want to burden them. I feel so alone & this disease has turned my life upside down.

    • Marisa Zeppieri says:

      Hi Diane – Thank you so much for your message. While yes, I have found purpose in LupusChick and helping people, please don’t think I don’t have horrible and very difficult days. In fact, I have them multiple times per week. This disease affects my income, relationships, body, etc. on a daily basis and it is still so hard at times. My faith and family have been such blessings to me. I started LC so that people out there with Lupus don’t feel alone. I am happy to hear you also have an awesome hubby and family – but also know that we are always here for you too! We get the day to day stuff! You can also follow us on FB where hundreds of women literally talk to each other daily and become friends! Thanks for checking out LC and I hope to chat with you again _ Marisa XO

  5. Jessica Camper says:

    Hello
    I a VA resident, I have 2 daughters.
    I am a RN as well. All of my life I was tired but very driven. One Sat. I woke up to an aortic dissection. My heart was catheterized and confirmed I had a huge heart attack(Sudden coronary aortic dissection)
    I have never been so close to death, I talked with God and begged him to please leave me. I said my girls really need me 6 and 9 at the time.
    A week passed in the Cardiac ICU.
    They finally let me go home on plavix, baby Asprin, and, blood pressure meds.
    My blood pressure was too low for meds.
    Before this I had years of swelling and joint aches.
    I now take prednisone
    2.5 daily
    I have circulated back to methotrexate injections
    Pain medication
    And lots of heat and baths before showers.
    I feel so confined, I get disability and since I have my bachelors degree in science in nursing I can substitute school nurse and teach in our local school systems.
    I am needing advice. I have not read your books but I will look at them for sure.
    I just feel lonely like no one understands and was looking for support through this oh I also forgot to mention I am 41. Thank you! I have so many odd things going on, Dr.sAppts. All the time, it’s like autoimmune diseases tear down the body 24/7, like home invaders but body invaders just destroying even while I sleep.
    I need God back more than ever , I need to figure out how to get better support in my life also. I have a hard time asking for help and I think that’s a big part of my problem, I really don’t have a large support system because I hide the real me. Thank you for listening
    So very much.
    Beyond tired these days♥️☺️

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