DeniseTripolone is the President and CEO of One Love Lupus Foundation. She is also a Lupus patient and the visionary behind our organization. She has spent her life since her diagnosis to raise awareness and help others with their own Lupus condition through both Eastern and Western methods. Her Lupus journey began in the Spring of 2013 – one week before her wedding day.
Below is Denise’s description of that day and the following weeks that changed her life forever:
“I WAS PATIENT ZERO”
It was 1:00am on a Saturday morning. I remember going to bed feeling fine. Everything was normal. In-fact, I was excited, because in just 5 days we were leaving to meet our friends and family to setup our wedding venue in California.
The next thing that I remember was being awoken with the most severe stomach pains and nausea that I have ever experienced in my life. I initially thought it was either a bad flu or just horrible menstrual cramps, but something didn’t feel right. My insides began to burn and within an hour my stomach became enlarged 3 times the normal size. Then the vomiting started, and I couldn’t stop. It happened every 5 minutes on the minute. I was so ill that my husband couldn’t physically move me into the car to bring me to the hospital.
About 10 minutes later, the paramedics arrived and immediately gave me every anti-nausea medication they had on-hand. Nothing worked. On the way to the hospital, I could hear them radioing the ER Doctors on staff to elevate my condition for when we arrived. When we finally got into the hospital, there was a medical frenzy. I was half conscious, in extreme pain, and doctors and nurses were doing everything that they could to at least minimize my pain and to stop the nausea. Again, nothing worked. The ER doctors stepped outside with my husband and informed him that they’d be transferring me to another hospital that was better equipped to handle my condition. Little did I know, that was code for “We need to send her samples to the Center of Disease Control.” At that point is when I became mortally afraid for my life. The pain and vomiting became so frequent and violet, that the doctors on staff had thought I had contracted a life-threating virus or bacteria and they wanted to quarantine me.
Once I was transferred to the new hospital is when their testing began. Every fluid and tissue in my body was extracted and tested. I had 2 emergency biopsies in two days. They had a team of specialists travel from out of State to treat me. After days of constant 24hr observation, still, no one could tell me what was wrong with me.
And just like that, as quick as the episode began, it was over. Within 3 days, I was completely fine and the doctors were baffled. With all of the tests that they had performed, nothing showed up in my blood or the biopsies – at least that’s what they told me. My husband and I, after being awake and admitted to the hospital for 4 days, left with no answers, piling debt, and a constant fear that this could happen again at any moment.
This was supposed to be the happiest time of my life. Instead, we and our families traveled to California to our wedding with a constant fear that “whatever this is” may occur again without any advanced notice. And this time, we would be 1000 miles away from home.
It wasn’t until a year later, after I had been properly diagnosed by a Rheumatologist, that I realized that what I had experienced before our wedding was my first Lupus “flare.” They arrive fast and violent and leave just as quickly. In all of the testing that I underwent, since there was no history in my family of autoimmune diseases, the possibility of me having Lupus was never considered. And it’s because of this, that I began the One Love Lupus Foundation. It is my life mission to raise awareness of the Lupus disease and to encourage more specific testing within the medical community.
Lupus took things from me that I can never get back. Things that are extremely important to me as a Woman. The ability to have children. My Wedding day. Financial hardships caused by countless Specialist visits. And even though I cannot get any of those things back, I can help others through my research and to let them know that there are other survivors of this disease that have gone through what they have, and that they are not alone.
Our goal is to find them and help them in any way possible. One Love Lupus is our legacy.
One Love Lupus Foundation